Adventures in Colon Cancer

Living stories

2012-01-30T20:31:00.000-08:00

Thank you for your continued prayers and positive thoughts. It really is amazing to feel their impact, and I feel so blessed to have your support. I go into chemo again tomorrow (Tuesday) morning. The ball starts rolling around 7:30 a.m. and I should be hooked up around 9:45 - I would love your prayers for a good chemo session, successfully treating the tumors and no nausea or other side effects.

There were a few great things in this two-week block.

During chemo, I get a drug called Irinotecan. Some people, including me, have a reaction to that drug. Shortly after they give it to me, I become panicky and want to pace and crawl out of my skin. Soon after that, I get intense vomiting. So, there is an drug they can inject (called Atropine) that is supposed to counteract that response. However, Atropine makes my heart race and it, too, makes me vomit. The trick, it seems, is in the timing. If we can time it so that they two hit each other at the right time, no vomiting.

This last chemo cycle, we got the timing right and they gave me an additional anti-nausea drug that knocks me out. Being out of it doesn't help me when I need to leave the building, but, hey, everything has its price. I was so glad not to get sick.

AND, I didn't throw up for the next few days. I did spend those days in bed, but not by the toilet. Woo hoo!

I rebounded well enough to be able to travel with Tiron and the kids (and a friend) to Disney World, which was a real upper.

And, best of all, I didn't get my usual debilitating stomach pains. THAT was awesome!!!

So, two whole weeks with no vomiting and no hospitalizations. I cannot tell you how thrilled I am. And because those stomach pains are so regular, and no one can figure out what causes them, I have to assume that all your positive energy and prayers are helping enormously. Thank you.

Tonight, I will participate in a panel discussion, sponsored by the WBUR CommonHealth blog, focusing on patient stories. For a long time now, I've thought about the stories that I hold of our children, like their birth stories, the kinds of babies they were, the cute things they did as they grew. I worry how they will know those stories if I am not around. There must be a way to keep those stories alive and vibrant. I considered videotaping them, but that just isn't my style, plus I can't imagine doing it without crying. I try to write them down, but the words feel two-dimensional on paper.

Noodling on all this, I started to notice the stories around me.

For example, we recently had dinner with a group of seven couples and their 20 children. At one point, I sat back and watched the dynamic among all the people there, and listened to several conversations.

In one group, a couple told a funny story about their day and connected it back to how they originally met. Clearly, their friends were already familiar with the story of how they met, and everyone laughed at the connection between the stories.

In another group, one friend asked a husband and wife about their weight-loss challenge. Apparently, everyone there already knew that the challenge started with the wife wanting to lose weight, and the husband joining to support her, then actually losing more.

In another circle, a mom settled an upset among a group of the kids by saying, "Ben is just like that. Go and play with Phoebe instead."

All these interactions showed how they were familiar with each others' stories and used that knowledge in their interactions. These folks live in the same community, their children go to the same schools, and they participate together in sports and other activities. The families carpool and the children have sleepovers and are as comfortable at their friends' homes as they are in their own. They all vacation together as well. This is a tight-knit group.

As I listened, I thought that if something (God forbid) happened to one of the parents in that group, any of the others could fill in the stories for the children in a way that would keep it alive and give it depth. Even without that, they are keeping each others' stories alive.

I don't exactly live in that kind of community. But I do encounter people every day, and am suddenly aware that, every time I interact with someone, they are telling me a piece of their story, through their words and actions. As I look at the communities I am part of, I am struck by the bonds of our shared stories: the parties we hold in our own little neighborhood; school events; the births, deaths and celebrations through our church; the annual celebrations of our families; regular dinners with friends. The list goes on.

It is an incredible privilege to hold these stories. I hope that when I re-tell their stories, it is with warmth, love and good humor.

And then, I have to trust that, when someone tells my story, or my children's stories, they will do the same.

Many blessings for your week ahead, as your personal stories unfold. Thank you for sharing them with me, and for being part of mine.

With love,
Marie

CT scan shows tumors shrinking and other answers to prayer

2012-01-17T23:10:00.000-08:00

Thank you for your prayers today, and all the power of the FB prayers as well (and thank you for keeping me anonymous!). They definitely did something because...

1. for the first time in recent memory, I did not vomit during chemo and

2. though I was wheeled out of the hospital, I am currently, actually able to be sitting up on our sofa.

And, your prayers directed toward a good CT scan made an impact - both my tumors are smaller, with no new ones showing, either! I was bracing myself for any news and very happy to hear that. Thank you for all the energy you sent that helps to shrink these. I do believe that our energies can work together to make something happen, both intended and unintended.

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Other news: On January 30 at 5:30, I will participate in a panel discussion following a short film called Outside In. The film is about a woman who was diagnosed with advanced cancer and not given long to live. It is now 10 years later - she will be there, too. Her journey is quite interesting!

http://commonhealth.wbur.org/2012/01/commonhealth-meet-up-outside-in/

The event will start at 5:30 at WBUR on Monday, January 30. It’s free, but seats are limited. Please RSVP to events@wbur.org.

It would be wonderful to see you if you can make it.

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Now, for another miracle story. I can't remember if I shared this with you went it happened. It felt so surreal that I wasn't sure how to to talk about it.

Today, between appointments at Dana Farber, I wanted to download some songs onto my iPhone. I couldn't get anything to download, so I asked my techie husband to help me either do that or help me to find the songs that were already on there.

"There are no songs on there," he said, looking through my phone. "Not even one."

I typically use my phone for calling, texting, doing email and taking fuzzy photos. But I knew I listened to music on it once before, and I decided that that music had to be on here.

So - I reminded my husband of a particularly challenging week in the summer. I was lined up to have this big surgery, kept getting hospitalized, and had unexplained bleeding. I prayed to God to thank Him for His presence but I could use a little reminder that He is there. And I went to get an ultrasound, followed immediately by a visit to a gynecologist. The sign in their office said no cell phones, so I turned my off.

Leaving the doctor's office, i took my cellphone out of my purse, turned it on and put the earpiece in my ear. I heard voices in the earpiece, and assumed it was just interference. I fished in my purse for my keys, zipped up my handbag, and then repositioned the earpiece for my walk to the car. I intended to make a couple of phone calls.

But the chatter was still there, and when I stopped to listen, more closely, I heard James Taylor's You've Got a Friend. Well, that was interesting. I looked at my phone - nothing was playing or accidentally hit. I looked at the music list - nothing there. Well, the song was making me feel good so I stood there and listened through to the end. That was nice. Then, before I could even move to make my phone call, another song came on, equally as engaging and feel-good.

After this second song, I walked to the car, listening to the third. I sat in the car, still listening, and decided to drive home. I continued to listen the entire way to what appeared to be a playlist made just for me.

No one was home when I arrived, so I relaxed on the sofa and continued listening. The "busy" piece of me wondered when this would end. But I knew that I couldn't recreate it, so I stayed. And sure enough, after exactly one hour of play, the music stopped.

I walked around feeling slightly puzzled and mostly blessed. I figured that Tiron could solve it. I didn't want him to burst my bubble, but the scientific side of me wondered how this playlist might happen. He couldn't figure it out, and I haven't downloaded tunes since.

Until today. I really wanted to listen to music. But it wouldn't download, and my husband confirmed that none were there.

I feel like I got that little miracle when I need it, and the reminder when I needed it.

This is one of the many reasons that I believe in the power of prayer, and that simple miracles appear when we need them. I am still awe-struck by this, and, it makes me happy. And I want you to know that these kinds of things are possible.

Love to you,

Marie

Focusing on the good

2012-01-16T19:42:00.000-08:00

Thank you so much for your messages and support. During chemo week, I was up for reading messages but it was typically difficult for me to write back. Reading them helped me so much, and I apologize if I haven't gotten back to you. I so appreciate the notes, sentiments, support and prayers. I ask for them again as I go into chemo tomorrow (Tuesday) and as I get the results of my latest CT scan.

On Mondays before chemo, I get a bit crazed as I try to plan ahead for the week. I can't predict when I will be up and about again, so I try to make sure that the whole week is covered, for meals, kid activities, errands, etc. I feel like so many days are not my own. My month looks like this:
- Six days when I am getting chemo (one day in the hospital, and two with the mobile pump, every other week).
- One to two extra recovery days that are sometimes needed (she says optimistically)

So, for roughly two weeks each month, I make no plans, because I have no clue how things will go. Each month, I try to squeeze four weeks of activities into my two good weeks, and I hope for more "bonus" days.

But then, I can't even always count on those.

For example, I have been operating at a lower level since December 31. When we went skiing over New Year's weekend, one of the women in our group bruised her toe. It appears that I am more competitive than I like to admit, because, soon after, I also bruised the same toe. Not on purpose, not a big deal, but still.

Later that night, I got a blocked intestine accompanied by lots of pain and vomiting, so my husband threw everything and everyone into our minivan and essentially flew home from Vermont. That ran its course, and all ended well.

Two days later, I had chemo, which was, well, chemo. As a bonus, it knocks out my white cells, so my bruised toe became an infected toe. I would normally let this run its course as well, but a friend of mine died, not from his cancer, but from an infection that set in. So I sent a mental thank you to him for again helping me out with that warning, and as soon as I could drag myself out of bed (three days after chemo), I showed that toe to a very kind and smart doctor (resident). He then showed it to the attending physician and - BONUS - a friend of ours happened to be working there that day! He is also very smart and kind (obviously, two traits I value in doctors). Greater than even his wise counsel, his very presence was uplifting and enriching for my soul.

I walked away with the infection drained, a prescription for antibiotics, an appointment to see a podiatrist, and a much brighter outlook on life.

But wait - the action doesn't stop here!

I had a few good days (woo hoo!), then the intestinal pain returned, along with 12 hours of vomiting. I work hard to make it through these episodes without medical intervention, but that night was not a pretty sight. I was in too much pain to move, and the kids were terrified. My husband was very concerned. There were moments, even hours, when I would have done almost anything to end that pain, including go to the hospital, but I couldn't move my body to the car. I could barely drag it to the bathroom.

Besides, I knew that the price of those painkillers would be a few days in the hospital. Those would be more lost days. Another incentive to stick it out at home.

Usually, to ride through the pain, I rely on brief, painless moments that arise spontaneously. Those breathers remind me that it is possible to be pain-free, and they help me to regroup so that I can indeed ride out the pain if and when it returns. I focus on those pain-free moments, and love it when those moments turn into one minute, then several minutes...it starts to feel like a trend line on my way to feeling completely better. I also find that if I focus on the pain, it feels worse and longer. If I focus on the pain-free spaces, I feel even a bit better.

Days after this attack, I was able to get up and around for longer periods of time, although the pain continued. We planned to return skiing for Martin Luther King weekend. My husband was now hesitant to go. I couldn't help to pack or prepare for the trip. Who knows how I would ski, manage at the mountain, take care of the kids, or whether I would get sicker. But I insisted that we all go.

Given all this, you might think I am a hard-core skier. I am not. I am an adequate skier. I do love it more now that it is such a challenge to even do, and, when I think of the stuffy hospital air, I deeply appreciate the fresh, cool, mountain air. I adore the social aspects of skiing, having everyone all together for a full weekend. And I want the boys to become good skiers, especially since skiing and ice skating helps to provide a happy winter existence in New England.

So, we went. My stomach issues were getting better but still present, so I was unable to ski at all. We truly enjoyed our time with our friends (we are sharing a ski house), and the kids had fun skiing and tubing with their dad and the gang, and ordering hot chocolate at a bar.

Our friends are part of a large, tight-knit community who generously welcomed us, and we went to 40-person party where everyone knew each other so well that it actually felt smaller and more intimate. I had to leave the party partway through (just to manage the pain in another room) but it was great just to be among everyone.

I think I dragged us all skiing because we could go. In the midst of all this craziness, I want the kids to know that we can still follow though on at least some plans, and that there is joy and activity in the world if you make the slightest effort to look for it. Even if I am hobbled over the entire weekend and searching for every small bit of time without pain, it makes me feel alive to be among friends, doing normal things to whatever extent that I can. Sometimes, I even find that I can do more than I expected or enjoy it more than I anticipated. And when everyone was getting ready to go skiing each morning, even if I wasn't going, I could feel that rush of anticipation just as I did when I first started going on ski trips with friends in my early twenties.

We are now at home, my stomach is still cramping but I have more and more moments of good, and I'm really hoping it recovers well enough to handle chemo tomorrow!

I hope that, when you feel moments of frustration, sadness, anger, despair, etc., you are also able to look between and beneath those feelings to unearth and feel the peace, joy, love, laughter, calm and blessings that can co-exist with them.

Much love,
Marie

Chemo tomorrow and other truths

2012-01-02T22:39:00.000-08:00

I am heading into chemo on Tuesday, so do send any prayers, good thoughts and general good vibes this way! I know how much this all carries me through chemotherapy. Thank you.

It's been great to have three weeks off and to have the energy to handle normal, everyday events. This was the year that A-man learned that his parents, not Santa, deliver the gifts under the tree. Yes, we perpetuated the Santa myth, and we let it go on until he insisted on an answer.

Like many heart-to-heart discussions, this one happened in the middle of the night. I admitted that, yes, we left the gifts, and then, when he asked why I lied to him for so long, basically stammered a version of, "Everyone else does it."

Now, if he lied to me and gave that excuse, I know that I would immediately jump all over him. He, however, generously entered into a discussion of why so many people feel like they need to make up something like Santa Claus, how so many people got on board, and how it lasted for so long.

After he fell asleep, I lay awake, talking to God, and then pondering whether my belief in God resembled his belief in Santa. I know how much I rely on God, but A-man also relied on Santa as the central concept to his idea of a fabulous Christmas.

I thought about this off and on while we enjoyed our holiday vacation. We traveled to Pittsburgh to bask in the warmth of my large Italian family and feed my soul. I enjoyed just being in the same room as my aunts, uncles and cousins, and watching my kids build a relationship with their cousins as well. I felt so fortunate to be able to travel and to have all that.

We went skiing in Vermont with friends. I'm not exactly a cold weather pet, but J-man wanted me to ski with him, and he loves it so much that I couldn't say no.

Actually, that wasn't the main reason I couldn't say no. I constantly remind myself that when I was in the hospital, I would have given anything to be able to ski, or do anything. Now that I have the chance, I should do it. Who knows whether I could do this tomorrow.

Over the holidays, we had more than enough reminders of how life can change on a dime. We received news of a friend getting divorced, another newly diagnosed with late-stage cancer, and a healthy 22-year-old who was dear to us and didn't wake up the morning after Christmas.

So, J-man and I skied with our friends. He is already a more confident skier than I am, looking for jumps and challenges along the way. As he took each jump and experienced the thrill of catching air, I watched his little body with my heart in my throat.

I love his belief in his body, how he just knows what it can do, even before he tries it. While I could tell him not to do a jump, it doesn't change his solid inner knowledge of his physical capabilities. I don't have that belief about my own body, no matter how hard I try.

It struck me that my belief in God feels like that. Even if other people tell me that God doesn't exist, that doesn't ring true within me. Just as J-man knows when he can do a particular ski jump, or when A-man understood that we leave the gifts under the tree, they each knew what felt true inside them, even if we don't all feel the same truths.

I feel joy watching J-man do just about any physical activity, and my conversations with A-man take me to the most creative and thought-provoking places I have ever been. Without trusting their different inner truths, I don't know that I could go along for the rides.

I feel so lucky and grateful to have the times with family in PIttsburgh and friends in Massachusetts and Vermont, all of whom, I'm sure, see their own truths in the world. I'm not so crazy about going into chemo tomorrow - makes back to school look like fun! But really glad that you will be with me in spirit and sending good vibes, and it helps me to know that you will be there in that way. Thank you for that, and for letting your own inner truth shine through in your life and with me.

Love,
Marie

On the rebound

2011-12-17T08:26:00.000-08:00

I had my first chemo session at Dana Farber and all appears to be....pretty good! Not that it was a walk in the park, but I haven't vomited yet so that is good, and I feel like I am on the rebound.

Thank you for all your good wishes and prayers. It definitely got me over the hump.

When I initially learned that I needed chemotherapy, four years ago, I didn't want to go to Dana Farber. Everyone there had cancer - I really wasn't ready to identify with that group, or to regularly see people in various stages of disease. In the past couple of years, I must have adjusted my self-image. So, I didn't have to gear up much to go, and I was even looking forward to a new environment.

Or so I thought. On Tuesday morning, prior to leaving, I was snapping at people more than usual, but hey, they deserved it. And maybe I was impatient with the kids, but perhaps they were taking too long to get ready for school.

BUT, when I started to tell my mother how to cook, I realized that I crossed the line into insanity. Or stupidity.

If you have met my mother or been graced with her cooking, you know that there is nothing I can do to improve it. For those of you who don't know my mother, here are two bits of information that might give you a little context:
1. She was born and raised in Italy
2. She cooks almost all day long, stopping only to clean up, and she makes everything from scratch

I eventually got off her back and into Dana Farber. Again, everyone there was extremely kind and patient with me. I didn't even mind going into the building. I had a surprise visitor who has become a friend (woo hoo - Thank you!) and met up with another friend who is also doing chemo there.

Usually I feel so nauseous just going into chemo that I can't swallow the anti-nausea meds. But this time, for the first time in a long time, I was able to hold that at bay and swallow the pills they gave me. Thank you again for your prayers for this!

The pills knocked me out and I slept through chemo, then got wheeled out in a wheelchair because I was still very out of it.

Ugh - just writing this feels gross.

My chemo regimen is the same: I went home with my own little personal chemo pump, that I wear for two days. They gave me one that is smaller than the one I had been using for the past few years, and that was nice. Maybe that is a very thin silver lining, but I'll take it.

After about 48 hours of wearing this pump, I can opt to disconnect it from my body at home. I prefer to have the nurses do it in a medical institution. I'm not good at it, and, I want all the medical stuff OUT of my home.

So, a friend drove me into Dana Farber, and they gave me a seat while we waited for the machine to finish transporting the last few drops of chemo. Then I got an injection to boost my white count, and went home to shower the whole experience away.

Now I'm on the upswing. That doesn't mean that I feel great, but I am out of bed and walking around. I got to attend the boys' Holiday Assembly at school. And my stomach and mind are finding their way back to normal. This process may take a few days, but I'm happy to be on my way.

I get three weeks off until my next chemo (January 3), so I can enjoy the holidays with my family. I am really looking forward to the downtime!

Thank you for your prayers and thoughts and smiles and warm wishes! Have a warm and wonderful holiday spent with those you love, and laugh when you can.

Love,
Marie

Chemo on Tuesday...

2011-12-12T21:09:00.000-08:00

Calling on you again - my first chemo session at Dana Farber will be tomorrow, Tuesday, December 13.

I arrive at 2:00 for a blood draw,
2:45 is my doctor appointment, then
3:30 is the scheduled time for my drip to begin.

Thank you for any and all prayers and positive vibes that the chemo is effective and that the anti-nausea drugs are, too! Even just a two-second prayer right now would be huge. Thank you!

With lots of love and gratitude,
Marie

No chemo on Monday!

2011-12-04T19:19:00.001-08:00

I would normally have chemo tomorrow (Monday, December 5) but my schedule shifted again and I will instead have chemo next Tuesday, December 13. If you were keeping track and about to send prayers and positive energy, thank you. Last time around, your prayers and thoughts made for a much smoother chemo week - thank you for that. I was able to get out of bed and although I still felt quite nauseous, I could function. And then, it just got better from there! So thank you for your very positive impact on my life.

As a group, my daily life changes because of the positive energy from you. When I started down this path, I had large reserves of my own energy and hope, larger than I knew at the time When something happened, I unconsciously dipped into my reserves to bring myself up. But since September, it seems that my reserves are slim and sometimes none.

Without these reserves, two new supports shone through. One is the power of God. I realize I am carried by this on a daily basis, but sometimes my awareness is stronger than others.

The other is the power of a group of people who are praying and sending good energy my way. The difference you make is tangible.

I know you can feel varying energies with friends and colleagues. Being around some people can pull you up, and being around others, however much you love them, can pull you down. Being in some environments is life-giving, while other environments suck the lifeblood right out of you.

I started to notice this more and more when going in for chemo. For whatever reason, I got depressed even walking into MGH lately. There was no one specific reason; it is more of an intangible feeling. My oncologist is caring, very smart, and knew my history. Though my rock-star chemo nurse switched working days, the others nurses were there for me, and the institution itself is top-notch. But when I entered the building, my entire body sank.

Still, it took about a year before I had the energy to change the situation. It is much easier for me to stay stuck in the way things always have been, especially when I can rationalize why I am staying. I know, though, when I start to do that, it is indeed time to make a change.

Fortunately, we live in an area with several great options, and, last week, I rallied and got to meet with an oncologist at Dana Farber. From the start, things felt better. When my friend and I drove into the parking garage, we planned to self-park but accidentally drove into the valet line. No problem - the valet moved the cars so we could drive through, with a pleasant tone of voice and without eye-rolling or eyebrow-raising. We entered the new building, where people cheerfully directed us to the right floor. And when I asked for a bottle of water (not noticing the sign in front of me that said "Refreshments"), a gentleman got one for me with good cheer and no sarcasm. The patient sitting next to me asked if they had Scotch, too.

The oncologist was easy to talk with, knowledgable and direct. He shared his positive energy and gave all the time I needed. I left the building feeling pretty upbeat. Of course, I didn't actually have chemo that day, but that's a detail.

I am fortunate that all my doctors, at MGH, Dana Farber and Beth Israel, know each other well and work seamlessly together. Even if I am not working routinely with the doctors at MGH, it helps my emotional transition to continue to consider them as part of my team.

To remain on schedule, I should have chemo this week. But, the boys have two weeks of vacation at Christmastime, and I'd love to spend it with them if I could. The oncologist was comfortable jiggering my chemo schedule for December to make that happen. So, rather than chemo ever other week, the next two sessions will be at every three weeks, and then, in January, I start every other week again. I know this sounds convoluted; don't feel like you need to follow it.

The plan is to keep doing chemo and see what happens before determining a next step. This is more uncertainty than I would choose to live with, but I guess I don't get to choose. So, I'm along for the ride.

If you don't mind, I'll send out a reminder for prayers, etc. before December 13.

In the meantime, please know how incredibly grateful I am to have your support. You are a huge part of my healing team, even if I don't see you very often. It feels a bit like I have fallen backwards without knowing whether I would be caught, then felt a zillion hands catching me. Thank you. And I send out all my positive energy your way.

Much love and light,

Marie

Request for prayers

2011-11-20T20:50:00.000-08:00

Hi everyone,

Chemo day tomorrow (Monday Nov 21).

Last time around, your prayers, etc. totally changed my experience of chemo week. I am going to push my luck and ask you to do the same this time around.

So, even if as you read this, if you can offer up a quick prayer, positive thoughts, or whatever good vibes you can manage for a good chemo week, I would really appreciate it! Whatever you believe and can offer, I personally believe in the power of all of us together sending all this forth. I've seen and felt its power, and I may be getting greedy, but would love it all again!

THANK YOU so much!!!! And in case I don't get to write before Thursday, have an incredible and very blessed Thanksgiving day.

Love,
Marie

Thank you and Palliative Care Conference

2011-11-14T19:59:00.001-08:00

THANK YOU for your positive thoughts and prayers. They have made a HUGE difference this week! I was able to get out of bed and even eat and get out a little every day. I am so amazed at the power of everyone together and I want you to know about the impact it has. It is amazing.

On another note, I attended a palliative care conference last week. The experience was enlightening for me. If you are interested in reading about it, the link is here:

http://commonhealth.wbur.org/2011/11/what-do-you-tell-your-children-about-cancer-palliative-care/

I am so grateful for your support through this and in awe of the difference you make.

The glory of friendship is not the outstretched hand, nor the kindly smile, nor the joy of companionship; it is the spiritual inspiration that comes to one when he discovers that someone else believes in him and is willing to trust him.
- Ralph Waldo Emerson

Thank you for your belief in healing.
Much love to you.
Marie

Prayers for a good chemo week

2011-11-06T10:04:00.000-08:00

I hope you are having a wonderful weekend. It is glorious here in New England.

I return to chemo on Monday. I've only had three sessions so far but each round has been crazy hard for me. I recently realized that one of the differences from a year ago is that I used to write to you BEFORE I had chemo and ask for your prayers for a good session. Lately, I have been writing afterwards, which doesn't really give you a chance to pray and send good vibes.

So, for this round, I am writing BEFORE I go in, to ask for your prayers that the chemo kills the cancer cells, that my healthy cell stay strong and escort the cancer cells out of my body, and that I feel fine going through this round. (Feel free to make your prayers even more specific as you see fit.)

Thank you!

Often through my treatments, I feel like I am tracking with my 93-year-old father-in-law, who is not dealing with cancer but does have age-related issues. At various points in this journey, you might find both of us reclined in my family room, each needing a drink of water, but neither able to get up and get it. We would look longingly at the kitchen, which is just a few steps away but seemed to be at the other end of a football field. The silence was only broken by his words, "Will someone be here anytime soon?" We were so comically pathetic.

Each time, eventually, we both healed and were up and walking again.

When I returned from my recent hospital stay, he had also returned from a hospital stay. Together, we spent a week on clear liquid diets. And once again, we both healed.

The other day, he came to visit, and, on his way out the door, said something like, "I don't think I can hang on much longer."

I told him that I've felt that way before, then joked that he should hang on at least another week because his son was coming to visit. He looked at me, smiled and said, "Okay, I can do that."

As he left, I realized that I need him to hang on, even if only because the parallels are starting to freak me out. Almost every single person I meet who has dealt with cancer or anything difficult inspires me to keep going. It is kind of like running a marathon -- when I see others moving forward, I take one more step forward. And if they stop, I suddenly lose my momentum, too.

Thank you for sharing your trials with me - it helps me to step outside myself. Thank you for continuing forward in spite of them, and thank you for managing them every single day - it inspires me to keep going. Thank you for cheering from the sidelines - it feels like roar of the crowds alongside the Boston Marathon. Thank you for living a joyful life - it helps me to know that this world is full of so many good things. Every little positive action seems to magnify as it travels. Then you for sending yours my way!

Love,

Marie

Blessings when you see them

2011-10-29T18:23:00.000-07:00

What a crazy few weeks! Thank you for your help getting through all this, especially to those of you who were able to help in person as well. We were carried along by your nourishing food and company and your help with the kids, as well as everyone who covered for my husband at work. Even for those of you who say that it isn't a big deal - without your help, there would have been a gap. Thank you.

So much has happened to make these past couple of weeks crazy. In summary regarding my health, after spending some time in the hospital, I am doing much better and will take an extra week off before my next chemo session.

Given this shift in my chemo schedule, we can now use meals on weeks where we didn't think we would need them. If you are so inclined, please let me know if you want to sign up.

In addition to my own health issues, we had innumerable crazy health experiences involving those we love, throwing us off our center in a big way. Though it impacts us deeply, the specifics are their news to share.

As for us, here are some key events:

After being ill at home for many days in a row, I rallied to meet with Eve Bridburg. Eve founded and is the current Executive Director of Grub Street, a literary arts center for writers of all levels. (If you are a writer, you need to check this place out.) I am energized just breathing the same air as Eve. She is creative, smart, funny and direct. She can cut through any degree of crap to get to the essence of whatever is going on or to highlight the absurdity in a situation. Leading a workshop, she provides important feedback to improve your work while keeping your ego intact. She laughs easily and at the right moment to diffuse tension, something I would love to be able to do. Obviously, I admire her and adore being around her.

A confluence of circumstances brought her to my home last week (lucky me!) and, as we conversed, we discovered that we both worked for CSC Index at the same time! I shouldn't be so surprised; Index attracted smart, creative and direct people. But during that time, I was a consultant totally focused on my work, and she was an admin working her way through grad school. I don't remember meeting her, and, knowing myself from that time, I'm sure that I didn't spend a single braincell on someone who didn't directly impact my client or my team.

My loss! How silly that I didn't stop to appreciate all that wonderfulness and fun right in front of me. I feel like I could have been friends with her much earlier and enjoyed this friendship for so many more years.

After meeting with Eve, though, things went downhill fast in alot of ways. To spare you the gory details of everything, I'll focus on my time at MGH last week.

I went in for chemo on Monday, October 17, same schedule as always. My stomach felt raw and ragged, and the nurse practitioner questioned whether I should move ahead. But I had two more rounds to go before my PET CT, and I wanted to plow through them.

MISTAKE. My stomach started out bad and got worse. After a couple of days, when I couldn't even keep down sips of water, I agreed to go to the ER. Thankfully, the oncology team paved the way and I got in without a wait.

Loads of things happened there, many of which are fuzzy due to all the pain I was in. For example, one of the nurses tried to force a huge needle into my port-a-cath, telling me that I had the wrong port. No - she was using the wrong needle. I can't blame her for insisting she was right against all evidence to the contrary - I myself have done that many times. One time, my husband and I flew on USAirways to Washington National Airport. However, I thought we were going to Dulles. When the flight attendants announced our landing at Washington National, I laughed and said to my husband, "Good joke!" without any explanation. When we got into the terminal, I commented with glee, over and over, how it looked just like Washington National. I must have sounded like a crazy person, but I knew that they had been remodeling the Dulles Airport and assumed that the final result made it look EXACTLY like Washington National. We were out of the airport before my mental image jolted in sync with my physical reality. But at least I wasn't trying to puncture someone's lifeline.

Larger than any of this, though, was the NG tube. NG is short for nasogastric tube, naso meaning something to do with nasal passages and gastric meaning the gastric system. It goes into your nose, down your throat and into your stomach. The patient needs to "cooperate" to have this all happen. That means, you need to go along with it AND actively swallow that tube. This sounds gross even if you aren't sick. It is a horrid vision if you are.

Plus I hate the word "cooperate" when it comes to medical procedures. It makes me feel as though, if it fails, it is my fault.

Now, if you have swallowed an NG tube, you are a stronger person than I am. If you know anyone who has done this, they deserve life-long respect, admiration, and awe.

Here is the picture. My nose is clogged due to the chemo I am taking. Not a great start. And I am vomiting with only brief pauses, which means that the muscles in my throat are pushing things UP, not down. I am in the ER because can't swallow sips of water, much less a thick plastic tube that has already passed through nose-grossness. There was a doctor pushing this into my nose, and an assistant standing by with a glass of water and a straw. (They wouldn't otherwise let me have water, only ice chips.)

The whole scene was insane. There must be a better invention. I asked them to knock me out, to give me anesthesia, anything to make me unaware, but no. They told me that I would feel better afterwards. I was skeptical. Finally, we agreed that I could keep vomiting, and they admitted me to the hospital.

My actual issue was a blocked intestine. If you think of your intestines as a one-lane, one-way highway with one exit, mine had a "road closed" sign, resulting in a major backup. Then, when my intestines and stomach produced their normal, regular digestive juices, those couldn't move forward, either. You can cure this by surgically freeing the blockage, or you can wait and see what happens, hoping to get lucky with it unblocking itself.

The nurses hooked me up to hydration to keep my kidneys going and we all settled in to see what course this would take.

In the meantime, here is one way I survive my hospital stays: Every time I see the team of doctors, I ask them what things need to look like in order for me to be released. And then I ask them, what progress do I need to make that day toward achieving that goal. Finally, I focus every cell of my being, all day long, on achieving that progress.

Step one was to stop vomiting. However, everything in the hospital room - the detritus on the floor, the smell of the hand sanitizer, the shared bathroom - conspired to make me vomit. Still, I remained focused and achieved that goal.

After day 1 of not vomiting, the next step was to hold down clear fluids, meaning vegetable (or chicken) broth, apple juice, cranberry juice and jello. Gratefully, my husband brought the Whole Foods versions of these to me (another way I survive the hospital stays: food from outside). I still constantly felt like vomiting, but I held it together and finished 1/3 bottle of apple juice plus a large container of broth. I was quite proud of myself, but the team declared me too bloated to go home, and I was to continue on clear liquids. Argh. (I later learned that apple juice can make you bloated.)

By Friday, I was so done with being at MGH, and the doctors still didn't want to release me. Starting with chemo on Monday, I had been there almost all week, and feeling awful that whole time. On top of that, my new roommate kept repeating, "Thank GAWD I don't have cancer." I didn't even have a bed by the window, and I was getting a bit bummed out.

I lay in my bed, praying for I don't know how long. My back was to the door, and my eyes were closed. I tried to imagine being held, or being someplace safe....anything that helped me feel like God was near. I kept praying to feel His presence.

At some point, I rolled over and opened my eyes. Standing in the doorway was a short woman with dark hair, wearing a pink labcoat. She appeared to be waiting patiently.

"Can I help you?" I asked her.

"Would you like Communion?" she asked me.

Thank goodness I opened my eyes in time.

While I obviously miss so much, please know that I really treasure your being there, and appreciate your presence in all our lives. I am now home, feeling much better, and want to thank you for hanging in there with all of us.

Love,
Marie

Joy is back!

2011-10-05T11:09:00.000-07:00

I'm so excited to say that my joy is back!!!

First, thank you for entrusting your prayers to me. I am truly honored to be able to deliver them to Lourdes and to pray them with you. Before I deposited them in their spot, I prayed them. (If you gave me something on paper, I didn't open it but prayed for your prayers in general.) Afterwards, I said rosaries for them, and lit candles. I even did the first Station of the Cross on my knees for them. At this point, I started to feel like I was becoming an old Italian woman, which, all things considered, would not be a bad thing.

Seriously, though, doing that was such a gift to me, and I have confidence that your prayers are heard and will be answered.

The town of Lourdes is located in southwest France, in the Pyrenees mountains. The geography itself is beautiful, but for a city girl, there are no restaurants to write home about, and the hotels are basic. Winding our way through the crowds, from our hotel to the Sanctuary, we passed shops bursting with candles, rosaries, statues, holy medals and other religious chachkas. Our ears were filled with religious music blaring from speakers.

Upon entering the Sanctuary, the noise of the shops faded, replaced with the melody of Ave Maria floating through the air, the cadence of prayers, the murmur of rosaries. Or sometimes, louder than a murmur. I loved listening to the Italians - it was like poetry to me:

Ave Maria, piena di grazia,

il Signore è con te.

You can envision the Sanctuary like a college campus, but replace the academic buildings with churches, cathedrals, crosses and Stations of the Cross. The grounds expand to provide a feeling of spaciousness, while at the same time, enveloping everyone in the warmth of over a century of prayers. Except for a small bookstore and donation boxes for candles or for bottles to hold water, there is no commerce. Very few people talk on cellphones or text as they walk around or sit and rest.

Last year, when I went to Lourdes, I focused on myself and my own healing. This year, I had a strong feeling that I was to go but not for myself. Unsure what that exactly meant, I decided to focus on your prayers and direct all my own prayers and actions toward everyone but me.

You know what - that was harder than I thought! It is difficult to be in a place of healing, in a place where almost 70 healing miracles have been documented by non-Catholic doctors and scientists, and to NOT ask for healing on my own behalf! But it was a good learning, a good discipline and good practice. There is something to be said for focusing outside myself. And I have a new respect for nuns, who basically do this as a career.

Plus, there is so much inspiration there, in the lives of Mary, Jesus, and St. Bernadette. That helped.

When I left Boston for Lourdes, I was pretty down and had lost my will to live. This is not simply because chemo was so rough; it was as though a switch had flipped inside me somewhere, and it was too dark to find it again and switch it back.

During my time at Lourdes, there was no earthshattering event. Returning home, though, I felt that something significantly shifted inside myself during my time there, and I am grateful for that. It literally feels like I have been touched by the grace of God.

I mostly feel like myself again. I even feel like a calmer version of myself, which is so nice.

Like anything that causes a shift inside you - traveling to a different culture, an encounter with a soulmate, meeting your new baby - words are inadequate to describe the feeling.

But I want to you know, I am in such a great place, I love that this is possible. For whatever you are handling that might bring you down in any way, even if you can't pull yourself up in the moment, even if you feel like you are supposed to be down in this moment, please know that you never know what tomorrow or even the next moment will bring. I'll admit, that could go either way, but at least hope is back.

While I was having my crappy chemo week, before I left for Lourdes, the nurse called and convinced me to meet with Palliative Care. This has been suggested, off and on, for the past year and a half. Palliative Care is when you are aiming for quality of life rather than for cure. For a long time, I thought it meant giving up. And, last week, when I agreed to meet with them, I had, indeed, given up.

After I returned from Lourdes, I decided to take my decisions one moment at a time, and trust that, rather than have a plan, I would be guided toward the right thing to do at the time. So, I went to my appointments, but wasn't sure if I would be doing chemo.

I walked in feeling stronger, in a very different way then ever before. Strong in my center, as though everything would be fine, and I wasn't in this alone.

When the Palliative Care doctors arrived, I assumed they would offer me more drugs: "Depressed? Try this anit-depressent. Stomach hurts? Try more Zofran." Like that. I hate that approach and wasn't sure how I would react. I decided not to worry about it and wait and see.

AND, they weren't like that at all. They listened carefully to my story and heard who I am. The lead doctor said that she could offer a menu of drugs, but that clearly wasn't the answer for me. She suggested two places to start:

1. Learn to accept and maybe even embrace chemo, because my attitude toward it is not helping me.

2. Try to replicate whatever it was at Lourdes that has moved me to this place.

Both of these are difficult for me. The first one has been suggested by many friends, several times over. It is like telling your kids that broccoli is good. They have to come to that on their own. Not sure if I can do this yet!

The second one - well, think about when you return from an awesome trip, one that has changed you in ways you could not predict or even describe. How do you keep from slowly returning to who you were before you left? You can't replicate pieces of what did it - it is the whole package together, some parts of which you may not even be consciously aware.

I do know that I need to nurture and grow whatever seed was planted in me while I was in Lourdes, and hopefully it will spread whatever blessings I got while I was there. That is my job now. Thank you for helping me get to this. And I hope you can personally feel God's blessings in this very moment as well.

Love,

Marie

Back on chemo and....an offer

2011-09-25T09:33:00.000-07:00

Lio by Mark Tatulli

http://www.gocomics.com/printable/lio/2011/09/13/

This comic captures a part of my life lately. Thank you for being my safety net, especially when I am hit into a hole.

The events of the past few weeks highlighted, for me, how important it is to have someone present in your life. Your notes and passing conversations mean so much. I couldn't answer from the dark place I was in, but I really appreciated them and read and re-read them.

Even if you didn't reach out, please don't worry about it. Before I entered this crazy cancer world, I had no idea of what to say, how to say it, etc. I still don't know what to say when I encounter this with someone else.

Thank you also for signing up to bring dinners to us. We initially put two months of dates on the calendar, just to see what works. Unfortunately, we will need dinners past then, so once we figure out the routine (you'd think I'd know this by now!), we'll send out more dates. Stay tuned if you are interested!

I was initially relieved to start chemo this week. When the surgery was cancelled, I found myself in the odd position of actually hoping that I could get chemo. How ironic is that?

In spite of my gratitude for it, the treatment hit me with a bang. Chemo is cumulative so I understand, for example, the 10th treatment feels harder than the first. But, I thought that after taking such a long break, this first treatment back might feel more like my 20th.

No -- it was more like my last treatment in January, picking up exactly where I left off.

I was sick, didn't feel like myself, couldn't think clearly, and didn't even get out of bed for almost three days. Once again I found myself with the familiar runny nose, the inability to clear my throat, the chemo taste in my mouth and the smell on my skin. On top of that, my tumors are painful and I have an almost constant stomachache. Those last two are new experiences for me.

The kids seemed to deal with it well; they needed to be near me and played around me and were generally well-behaved and easy-going in my presence. It didn't matter if I could actually participate or even move - they dealt a hand for me in games of Uno and laid my cards on my belly. I was a grateful recipient of their spa treatments (Aidan's newest business idea), and their captive audience as they read books. They were calm and sweet and kind.

When they weren't with me, I could hear their stress. They didn't want to leave me to go to school, they didn't want to play anywhere but near my bed. They would fight with each other and with Tiron over the smallest detail.

This whole situation stunk. After four days, I decided that I couldn't do it again. I just couldn't do any more chemo. It was taking too much of a toll on me and on everyone around me.

I started to think: Everyone dies. Maybe it is better to just get it over with. There is something to be said about living your life without the pain and sickness of chemo or other treatments.

During my three trips to the hospital this week, I saw people in various stages of physical distress. Some were in wheelchairs, some on stretchers, others sitting silently with their discomfort. I tried to see what made them continue on each day, but I couldn't uncover anything

Yesterday, Thursday, I pulled my sorry butt out of bed and dragged it to yoga class. I spent the day forcing myself to consciously pay attention to and be thankful for specific things in my life, trying to find reasons to move forward. My yoga instructor was back. My acupuncturist offered to treat me while on her maternity leave. I am immensely grateful for these things, but they weren't reasons for living.

I went completely off my diet. I ate cheese, wheat crackers, watermelon, chocolate. I had a glass of wine. Those were good, but not as satisfying as I remembered. That night, I attended Curriculum Night for parents (also known as Back to School Night) at the boys' school, primarily in search of brownies.

Our two boys attend the school, one in third grade and one in Beginners (pre-K). Tiron and I split to cover both classes. Tiron suggested that I attend the third grade class discussion because I am usually the one to help with any academics. I told him that I wanted to go to the Beginners class tonight. I thought, but didn't say, that maybe he soon would be the one primarily helping with third-grade homework.

Once in the Beginner classroom, it was good to see the children's work and connect with the other parents. The teachers did an amazing job of presenting the Beginners class information. It was calming to hear their warm description of what the kids learn as they play with blocks or devise a dress-up scenario. We learned how the children will begin to collect and graph information, how they will write a story with their own made-up character, and how they will typically navigate friendships as the year progresses.

I read Julian's description of himself: He lives with his brother, Aidan, his momma and daddy. He wants to be a race car driver when he grows up. The teacher explained, "He initially said that he just wants to be a grown-up." Me, too, honey. Me too.

To conclude the evening, the teachers ran a slide show of photos from the first couple of weeks. They played songs that, combined with the photos, make me teary (like, These are the Days to Remember by Natalie Merchant). I enjoyed the photos of Julian interacting with his new friends, swinging on the monkey bars, having a snack, reading a book, building a tower. I got to see the joyful faces of his classmates and realized that I totally love so many of them and am falling in love with the rest, as they are slowly making their own way in this new environment with joy and pride.

And that brought me back. For me, life is so much about experiencing these unchoreographed, unexpected moments, filled with love and shared with others I don't yet even know but who somehow become major part of our lives -- these surprise connections in each and every day. There is no way to know what is ahead of us, so we forge on and are often so fortunate to be bathed in joy and love.

I am happy for whatever circumstances allow us to connect. Your presence in my life brings me strength and joy. Please don't ever underestimate the power of that.

I am very self-conscious about taking more than I give lately. But I can offer this to you:

On Saturday night, Tiron and I return to Lourdes. There is a spot where I can tuck a note: a request, a blessing, a prayer -- whatever you like. If you want, I would be honored to bring that for you or for someone you care about.

I know this is last-minute, but if you can get it to me before Saturday afternoon, I will bring it with me. I promise that I won't read it!

Or, you can email it to me while we are there, though it would be more difficult for me not to read that if you want it to be private.

In the meantime, take good care, enjoy the day, and please know how powerful your presence really is.

Much love and many blessings,

Marie

Surgery cancelled

2011-09-09T20:07:00.000-07:00

Thank you for changing your plans and making room to help us. I am so touched and grateful for your generous heart. I didn't realize that help could come in so many forms, and in so many ways.

Before you go too far, I need to tell you that the surgery was cancelled as of tonight. Thursday's PET CT revealed two new tumors, one of which is outside the surgical area. It doesn't make sense for me to go through this surgery if we aren't going to get all of it.

There was alot of swirl here tonight, but I am very grateful to my MGH surgeon and my UMass surgeon, both of whom took their time on a Friday night to go over all this with me.

We will decide on Monday what to do next.

Thanks for riding this roller coaster with us. I'm feeling okay - a little stunned, but basically like this surgery wasn't really meant to be. And I'm glad that we found these tumors before I got cut open. The kids have absorbed the stress of all the sudden phone calls and medical conversations, so we are managing that.

If you are still focused on Sept 16, please send your prayers and good vibes to my soul sister, Shira, who will be embarking on her treatment that day. She is headed for China to do a really cool treatment that they do here in the US, but not on our kind of tumor. They are doing these treatments in China (as well as the UK and many other countries) with good results. I'm cheering her on and hope you can, too.

More to follow. Thank you for staying tuned!

Marie

The path to surgery is paved with tests and good intentions

2011-09-07T20:07:00.000-07:00

Thank you so much for your notes of support, your suggestions, your funny stories. Thank you for being there and for helping me to feel less alone in all this.

I did get to move the surgery date. It is now on Friday, September 16 at UMass Worcester with Dr. Laura Lambert. I expect to be in the ICU for two days following surgery, then in the hospital for about 8 days after that. The recovery itself, I'm told, is 3 - 6 months. Of course, I'm aiming for two months.

I am feeling so great right now. It is hard to imagine how I will feel in about two weeks.

For those of you who have asked what you can do, here is my little list:

1. First and most of all, I can use your prayers (or whatever your version of this may be). I welcome prayers for healing, for guidance for the doctors, and for anything else you are inspired to pray for. I cannot overstate the difference that this makes in my healing. I know this is how and why I have come so far already. I thank you from the bottom of my heart for your part in this for my past surgeries, and if you can do this again, it will be huge for me.

2. Physical presence at the hospital. Once I am out of the ICU, I am told that it would be very helpful for me to have someone in the room to get help if I need it. I know that the hospital is one hour outside of Boston, and that this is alot of hours out of your already busy schedule. AND I won't really be up for conversation or even much to look at. You'll have to bring your own entertainment. But it is helpful and maybe you can get some work done or a book read? This also entails picking up food from my mother and delivering it to me.

3. Meals at home. My parents will be running our household while I am in the hospital. I am not sure how long they will stay after I return home. At that time, we can definitely use some help with food, mostly for the kids and Tiron.

4. Nighttime help. We are looking for regular help with the kids for nights and weekends. If you know anyone looking for that kind of job, send them our way!

5. Last but not least, if you are involved with our children, we appreciate any support you can give them during this time.

I think that covers it. Let me know if I forgot anything!

These past two weeks feel like they have been all about new beginnings, in a way. Along one vein, we were finishing up summer vacation with the boys, getting ready for the beginning of a new school year. Along another vein, I was finishing up my chemo vacation and getting ready for the next step in healing with this surgery.

Last week was truly the week of medical tests. I was in the ER on Tuesday (more on this later), had an ultrasound on Wednesday to determine the source of the bleeding (which, of course, stopped two days before the ultrasound), had my pre-surgical tests in Worcester on Thursday (checking my heart, etc. to make sure that I was in shape for surgery), and a PET CT scheduled for Friday. My psyche must have said, "Enough" because I mistakenly ate a rice cake before the PET CT, which was strictly not allowed. So, needed to reschedule that.

The ER visit....Warning: This will be TMI for many of you, so you may want to happily sign off now.

On Tuesday night, my stoma started "growing." My stoma is the polite word for the piece of intestine that sticks out of my abdomen. It has grown in the past, and then gone back to its normal self. So I didn't initially worry about it. Around 10 p.m., I was suddenly aware that it had grown to the size of a grapefruit. It was freakish-looking, and it was so large and heavy that it took two hands to hold it up.

I avoid hospitals but I knew I had to get to the ER. I watched the kids sleeping, thinking that we finally got them to some semblance of security. Now, we will once again disappear during the night, and they will wake up to the unexpected. I felt so badly for them. I hoped this would be a quick visit and that we would be home when they woke in the morning. We couldn't wake them to let them know we were leaving. That would require taking the time to orient them and explain what was going on, and I didn't feel I had that time.

We called someone to watch the boys, and Tiron and I raced to the hospital in my old car, as opposed to his new car. The kids are not allowed to eat or drink in that car. There was no discussion about allowing a freaky intestine that looked like it was about to blow.

The nice folks at MGH wheeled me into the ER while Tiron parked. I went through the check-in process, all the while holding this thing that was getting bigger and drier and darker. Drier is not good. Darker is worse. Darker means that the blood supply is getting cut off. And, I learned, it wasn't simply "growing;" my intestine was literally coming out of my body.

I have a pretty high pain threshold, so on a scale of 1 - 10 (10 being the worst pain ever), I told them it was a four. Fine. I got put in the waiting room with everyone else. Then I realized....I can't politely wait my turn. And, I didn't do this on purpose, but here is what happened next: I started to act like I was giving birth.

I got out of the wheelchair and paced. I started screaming. And then screamed louder. A nurse came over to shut me up and I showed her what was going on. (No one wanted to see this before then, and I don't think she did, either.)

Her eyes got large and she ran to find a room for me. They soon wheeled me past a large number of patients in the hallway, waiting for a bed. While I was glad to get fast service, I wasn't so glad to need it.

I also didn't want to need it at the end of August. All my doctors were on vacation, and the new residents had been there only two months. Two residents were checking me out. By my estimation, one was a third-year surgical resident. I'll call him Max. The other doctor seemed like a first-year resident. I'll call her Cindy.

They stood on either side of my bed, examining this enormous, weird thing on my belly. Max would politely listen when I talked, as if somewhere in his training, someone told him that he had to listen to the patient. But I never got the feeling that my words got through.

Cindy started trying to push the growth back into my abdomen. I didn't watch what she was doing, but I was already in alot of pain and that hurt, too. I'm comfortable dealing with pain, but I scream. I don't mind screaming, but it seems to upset everyone else. Since they couldn't push it back in without my screaming, they stopped. Max decided, a bit too eagerly in my opinion, that I needed emergency surgery, and he left to assemble the surgical team.

Tom arrived to hook me up to an IV. I asked him to use the port in my chest rather than a vein in my arm, and he readily ignored my request, heading straight for my arms. Thankfully, Tiron intervened and convinced Tom that it would be much easier to use my port than to find a good vein. I hate that helpless feeling as a patient, and especially feeling like I have no voice.

All the while, my mind was racing. I need my limited veins for my big surgery, not this one. If I have this surgery today, it will put off my other surgery, which is more important to my life. Plus, I would not be home for days. Yet another instance for the kids -- they go to sleep, and who knows when they will see their mom again. Not exactly your ideal childhood. I would have to reschedule my next-day ultrasound. And my upcoming PET CT. My mind was trying to handle the logistics.

Cindy returned to my bed. "I saw this doctor once push in a hernia. She's incredible." She looked at me a little shyly. "It's a long shot. Would it be alright if I went to find her? I don't know if she is even here, or available."

"Sure," I told her. Why not? I thought. I live for long shots. Tom had given morphine to me, and Zofran (which I hate), and I was now a little easier to be around.

And then, Karen Kim appeared. It was like the sky was blue and the heavens parted and there she was, next to my bed. Outside my curtained area, the surgical team assembled. Anesthesia was hovering. The surgeon was pacing. He told Karen that she had one shot and had better hurry. They were ready to take me in. Karen calmly and firmly told them to wait, and not to pressure her.

She and Cindy stood on the same side of my bed. They adjusted the bed so that my head was lower than my feet, and I closed my eyes. I could hear Karen tell Cindy that this requires patience, and I listened as she calmly described what needed to be done. I don't know who actually did it. I remember seeing the guys outside, peeking at me through the curtain. And then, suddenly, I felt all better, and I heard Karen say, "It's done. What do you think?"

The other doctors came in to see it - there was alot of disbelief. And alot of relief, but that was mostly mine. I was promptly discharged. They needed the bed.

A few days later, I drove past a man holding up a sign. It said:
Your change
Can change
My life.

I've been too cynical to believe that small change can actually change someone's life. Then I remembered my hours in the ER, and the risk that Cindy took, trusting her idea and going for it. Because of her, we returned home before morning. I didn't have to postpone my big surgery. The act of one person during a night of many acts in a busy ER, her "small change," literally changed my life.

Your prayers do, too, as well as your presence. I don't know how I can repay you. My gratitude is huge. Thank you.

Marie

It's Door #3

2011-08-29T09:38:00.000-07:00

After much soul searching and research, the decision is....Door #3. I am going for the big gun HIPEC surgery. It basically came down to this: I am up to bat. My team is hanging in there but could use a comfortable lead. I could hit a solid single with the proton beam radiation (Door #2). Or I could go for a home run with the HIPEC surgery. I could clean up the bases and we would have a fighting chance at a solid win. I don't know if I will get another at bat. Now is the time. So, I'm going for it.

Thank you for your support on this, your thoughts and prayers and suggestions and general notes of support. I read and re-read them (even if I don't always answer) and they are so energizing to me.

If you want further information on the surgery, here is a link to a recent NYTimes article:

http://www.nytimes.com/2011/08/12/business/heated-chemotherapy-bath-may-be-only-hope-for-some-cancer-patients.html?_r=1&scp=4&sq=hipec&st=cse

Tiron is INCREDIBLY organized with my medical files, so we were able to connect with doctors relatively quickly. We talked with Dr. Paul Sugarbaker in D.C. (the granddaddy of this surgery in the US) and Dr. Laura Lambert at UMass. Talking with Dr. Lambert, I felt such relief that i could cry. Or maybe I just wanted to cry that I am in this situation having this conversation. Nevertheless, she is the walking persona of a great doctor for me: Confident without being cocky, optimistic without false promises, and caring with a solid base of experience. We considered talking with doctors in Pittsburgh, but I couldn't even imagine anyone better than Dr. Lambert for me.

In addition, we talked with people who have been through this surgery. I have to call one more person on my list, but overall, everyone who has been through this agrees that this is one big surgery though well worth it. You know how you go for your first bikini wax, and quite a few friends will say that it smarts, but there are also a few who will say, "It isn't so bad." Well, there is not one person who is saying, "It isn't so bad." THAT is scary.

It is also sobering to think that, for as energetic and strong and invincible as I feel right now, I know enough about surgery to realize that it totally knocks you on your butt.

The good news -- remember, this is all relative, but hey, I'll take it -- is that they have simplified things somewhat so my hospital stay won't be as long as they used to require in the past, and I don't need to go home with a feeding tube. Yay! I hate being in the hospital, and I love to eat. At first, I thought this meant I was getting "HIPEC light," which I didn't want. If I am going for this, I want to do the whole thing. But Tiron explained that in years past, heart surgery required a longer stay in the hospital than it does now, so I do believe that I am getting the full treatment here.

We continue to see what else is out there. There is a place in Germany where they analyze your blood and determine whether the chemo you are getting will do anything for the tumor you have. (I'm not sure I got that description completely right.) So we are looking at that. There is a place in California that does something similar if you have a tumor that has been extracted in the past, say, 24 hours. I have to say that the best thing I've found is in China. I'm not going for it, but I'm following the blog of Terri Taylor, the Pittsburgh journalist who is currently being treated there for rectal cancer. I'm very intrigued and hopeful. Ironically, she reported on this very treatment in the 90's. It is used in the US for other cancers, but not all cancers.

Yes, I have become one of those people chasing all over the world for what I can find. I used to think those folks were pathetically desperate. Of course, whenever I judge someone, I find myself in their shoes. And I don't actually feel desperate. I mostly feel like not everyone does everything well, and the world is small. So where once you might travel to, say, New York, to see a specialist, you might now travel to Germany or China. Of course, it is still more time-consuming and expensive. Details, I suppose.

Okay, we got the decision down and had a plan. We would get the kids settled in school, and then do the surgery. My rock star MGH surgeon was even available to be there, which comforts me as she knows all the parts of my abdomen as they are currently arranged. (All my insides are in new and different places than they were when I was, say, 40.) She has also become my security blanket. We aimed for the week of Sept 16.

KEY WORD: Plan. Ugh.

Psalm 33:10: He frustrates the plans of the peoples.

Or, as Woody Allen says, "If you want to make God laugh, tell him your plans."

Plans in place, we left for a two week vacation on Cape Cod. The week started off with intense abdominal pain for me. I could walk around but in definite pain and couldn't eat for three days. I suppose it helps my swimsuit body, though with a breast prothesis and colostomy bag, I don't worry so much about how I look in a swimsuit. Then, I started bleeding from parts where I should not be bleeding.

Off to Cape Cod Hospital for a CT scan to see if there was anything big and scary causing the bleeding. That in itself was borderline comical - so many old people that I hoped they were there for the AC. Add to that a CT tech who smoked a cigarette just before seeing me. I couldn't resist unloading on him. Of course, he got his revenge by scanning me THREE TIMES just to see if I had the correct port in my chest. That is before he even did the scan I came for.

Tiron got a copy of the scan so that we could check it out ourselves at (our rented vacation) home. I didn't envy him. We wanted to know, but it was still really scary. The good news is that there was nothing big and scary and new showing up, though the liver met we knew about grew a little (not unexpected) and there appears to be a new liver met who decided to join the party. The written report from the doctors later confirmed all this. Weirdly, I was relieved that that was all there was, and we went on with our vacation.

We had a GREAT vacation. Idyllic actually. But the bleeding got worse, so we headed home on a Friday morning.

That afternoon, I set up an ultrasound for the bleeding, a PET CT in preparation for the surgery, and got a surgical date of Sept 12, which I am trying to change because the kids will have JUST started school and I want them to be a little more settled. Plus the last time I was in the hospital on Sept 12, we had a baby who died so that week still carries alot of emotion for me. Life is so complex! I set up the anesthesia appointment and an appointment with the surgeon, and started the process of booking rooms nearby for any caretakers to stay. So the wheels are moving quickly. My head is spinning with everything I should be doing here to get everything set and everyone ready for the change to school and for my hospital stay and recovery. Kind of like hurricane winds on the inside to match the hurricane winds on the outside.

So I will leave you with this comic that someone found for me. Definitely expresses my state my mind at times during my chemo vacation.

http://xkcd.com/931/

Be well, and hug someone today!

Love and prayers,

Marie

Deciding among three treatment options

2011-07-28T17:24:00.000-07:00

Thank you for staying tuned and for your patience. The past two weeks have been filled with doctor appointments as we sort through this.

The MRI confirmed that the lesion on my liver is indeed there and cancerous. I considered my liver to be a "no-fly zone" when it came to cancer. Looks like we have a violator.

The next step is to decide what to do about it. It is located near / on the edge of the liver, near the diaphragm.

Luckily, I get to choose what is behind Door #1, Door #2, or Door #3. I suppose I can also pick what is in the envelope that Carol Merrill is holding, some as-yet unrevealed goodie.

Here are the options as I see them:

Door #1: Stereotactic ablation
This radiological procedure, often used for liver lesions, applies heat or cold to freeze the lesion (think - like a wart). However, because of the location of mine, it is a bit more complicated to protect the diaphragm. Still, it is do-able.

Door #2: Proton beam radiation
My mental picture of this one is that they shoot a proton "bomb" filled with radiation into the lesion. Once it reaches the inside of the lesion, the proton is programmed to release its radiation. Very high-tech, and, as side effects go, minimal. It takes about 2 weeks of prep plus two weeks of treatment, then is done. It has been effective for lung lesions, but is still in the experimental phase for liver lesions. It doesn't sound like the most comfortable procedure, but it doesn't feel scary to me, other than the fact that there will be much radiation used, as well as a few CT scans (meaning more radiation) for guidance.

Door #3: Surgery
Those of you who have been following this saga for the past few years may remember the big-gun surgery that I talked about awhile ago. Though MGH, Dana Farber and Sloan Kettering don't yet do it, I could have it done in the D.C. area, Pittsburgh, central Mass and Europe. Makes it feel a bit exotic and almost sexy. THAT is how weird my world has become.

Here is how I think of this option -- they open you up, cut out everything they can find, "thin" the peritoneal fat, then pour hot chemo into your abdomen and massage it into every place possible. Then they close you up and turn you like a pig on a spit, so that the chemo flows into the nooks and crannies of your innards. You wake up with a minimum of 17 tubes sticking out of your body. As scary as that sounds, I considered that it would be scarier to wake up with no tubes, indicating that they couldn't do the full surgery. Anyway, the hospital stay is something like 4 - 6 weeks, followed by recovery at home. It does sound brutal, but it brings a possibility of a cure, which the others do not.

Oh, and as a bonus prize, no matter what door I pick, I get to return to chemo again!

Still, I do feel fortunate to have choices. That week in particular, when I was faced with the deaths of others who have so graciously handled all the crap that cancer deals, I am especiallly aware of the fact that I am lucky to still be walking on this earth.

I had this in mind when I walked past a man in Harvard Square holding a sign that said, "Cannot work due to disease." Wondering what he was facing, I decided to talk with him.

"The doctors found a spot on my liver and they need to biopsy it," he said.

I couldn't figure out how this kept him from working, and I am sure that showed on my face.

He continued, "It might be cancerous."

He started to describe the biopsy procedure. Even knowing the fear of facing the unknown, I had experienced too much this week and needed to consciously muster some patience for this.

I decided to tell him, "I have a lesion on my liver. And they know it is cancer." I tried to say it kindly.

And then I realized, he felt overwhelmed and completely alone, unable to connect with even another who is on that path. Not only was he lacking financial resources, he also lacked the inner resources to deal with whatever life threw his way. No amount of money would fix that.

I thought of the two people I know who died this week, how they were both younger than him, how they handled their situation with grace and strength. I thought of how their families and friends supported them so closely that the path was not just patient's but woven throughout all their lives, how they remain connected in spite of the risk of intense grief. I thought of how they carry that person with them in so many ways, how they help their love to endure, and how we all support each other as we face life's joys and challenges.

Of course, he could have been feeding me a line. My kids even said, "Did you see those muscles, Mom? How could he be homeless?"

Comparing my situation to the one he described, I feel fortunate indeed. Thank you for being open to us, for allowing us to impact you, and for hanging in there with us. And if you have any idea of how I can make this decision, let me know. I've never been good at Let's Make a Deal and can't even decide on dinner at times; how can I decide this!

Much love and laughter,
Marie

PET CT shows activity, requires further testing

2011-07-06T16:51:00.001-07:00

Thank you for being here for me, in the midst of everything that is going on in your life, and in the midst of this amazing summer! And in this crazy world of so many things to pray for, thank you for continuing to keep me in your thoughts and prayers.

I wanted to share the results of last week's PET CT. I can't say this is a total surprise, but I was still stunned: The PET CT revealed "some activity" on (in?) my liver, and my CEA rose by 1.5 points to 3.7. (Normal is below 2.5)

In the category of things can always be worse, I hated that my CEA kept rising by 0.2 every month. Of course, now I would love to have a rise of only 0.2!

Of course, I would love to not be concerned about this at all. It took a few days after hearing the news to regain my footing again. It has been marvelous to be chemo-free for almost six months, and I want more of THAT.

In those six months, I feel like I've been able to look more outside myself. I could enjoy time with Tiron and the kids, be more involved with their activities, consider volunteering and doing other things that are just plain fun. I truly loved doing simple, everyday things. I even loved being able to wheel in the trash cans, especially since that is so out of character for me.

Also during those same six months, it has been sobering to see so many others dealing with various forms of cancer. The parents and siblings of my friends. Parents of my children's friends (who are now friends of mine). Friends from high school. New friends. Friends of friends. And, in the category of "most heartbreaking," children of my friends. I hope that I can be as supportive of them as you have been of me. It is an honor that they invite me to be.

Yesterday, I learned about an incredibly nice guy, who sometimes works on our house, always with a smile and good cheer, who was just diagnosed with a life-threatening cancer, and his road appears uncertain. Sole breadwinner in the family. Oldest child is around five years old.

It can feel so overwhelming.

Yet it is vitally important that we are there for each other.

On the day I had my PET CT, a friend was having a CT scan on her hopefully-gone tumor. Her test was in the morning; mine was in the afternoon.

Even if I can keep my anxiety at bay, there always seems to be some fumbling around these appointments: A bad stick to my arm. A bad attitude from someone. Something that can turn an already-stressful day into a bad experience overall.

But, on this particular day, my friend left a note for me. A short, scribbled note on a small piece of notebook paper. For me, it was a warm and wonderful gift, making me feel like I had a friend in the room.

For the staff, it was an energizing force that literally passed through them. Everyone I ran into, when they learned my name, asked if I received the note. And when I said yes, they brightened up and then talked excitedly with someone around them about the fact that someone had left this note for me, highlighting their role in getting it to me.

These little things can change the course of a day. I was beyond touched that a friend would think about me on the day of her own big test, write a note and actually deliver it to the department where I would be. It changed my entire experience of the test. Now, instead of remembering the test itself, I primarily remember the note.

Plus, we were all thrilled with the realization that that little scrap of paper made it to me despite shift changes, messy desks and staff who have many other patients to think about and treat. That little note brought more joy and good feelings than I think she could have conceived. With it, she lifted me, a whole department, and the ripple effects from there.

So, for all of us, whatever we are dealing with, I send out my best and aim to do what I can for everyone who needs it.

Next step: I had an MRI this morning to get a better look at this. Stay tuned. Thank you for being there, for your prayers, and for every little thing you do.

Love,
Marie

Shift the Energy

2011-06-13T19:22:00.000-07:00

Thank you for being there. Thank you for being there in so many ways: for support, for listening, for laughing, for sharing. Thank you for allowing me to share in your life, and I feel so fortunate that, especially in these past few months, I've been able to do that more actively.

I am thrilled to share the news that my CEA level is holding steady. The CEA is a marker in my blood that can often indicate the presence of a tumor growing.

Below 2.5 is considered to be normal. My numbers, every month since January have been
1.6
1.8
2.0
2.2

Notice a pattern? Data-oriented me was pretty worried about the one for May, but it was flat at 2.2, and for that, I am immensely grateful. My next test is a PET CT at the end of June -- all prayers and positive thoughts are welcome!

I feel so fortunate to be off chemo since mid-January. My energy and stamina are returning, along with my hair and weight, and the stress level in our household is noticeably reduced. This all makes it easier to look outside myself, and I now see so many people with cancer who can use help and prayers. Some are older, most are my age, quite a few are younger than I am. I hope I am a fraction of the help, support and presence that you have been to me. I know that this is big part of my good standing these days. Regardless of your beliefs, I feel like the divine is working through you, and that you are blessing me with your grace.

I heard an inspiring story last night. Friends of ours had a home destroyed by water. It is a relatively new home, and needs to be totally gutted and rebuilt. I can't imagine the stress that goes along with this. However, like many resilient people, they put a positive spin on it: No one was hurt. It isn't our primary residence.

That alone was impressive, but then these folks went one step further: They took the negative energy from that episode and swung it around to the positive by making a donation to flood victims. While they were experiencing the pain of extensive water damage, they realized that they were still in a position to help others, and then did so. I stand in awe.

You all have done the same: While you each have your own life stresses going one, you have been so incredibly generous with me, with your time and prayers and support. I am continually touched by this, and I hope that I can shift the energy in a positive way to others and back to you.

Much love and gratitude,
Marie

P.S. For those of you interested in "cancer experience" stories:

I entered the elevator at MGH to get to the seventh floor for my blood test. Over the past year, I developed a phobia of touching these particular hospital elevator buttons.

Like many people with phobias, I have my own coping strategy. I enter the elevator then wait to see if anyone else pushes the button to my floor so that I don't have to. Luckily, a blonde woman standing by the buttons pressed 7; I breathed a small sigh of relief.

Just before the doors closed, an older couple entered the elevator. Both were tall and thin and the woman seemed to be in slightly better cheer than the man. She looked at the display of buttons and said to her husband, "Oh, seven has already been pressed."

At that moment, my brain-mouth filter didn't work and I blurted out, "Popular floor."

The couple and the blonde woman looked at me like someone who didn't fit into the club. I felt a mix of things: grateful that I no longer looked like a patient, desire to prove that I am part of the group (what was up with THAT?), and a small bit of embarrassment at simply saying something that may have made someone else uncomfortable. I willed my mouth to stay closed.

The blonde woman by the buttons turned to the tall, thin man and said, "I recognize you. You and my husband got chemo together. You look like you put on weight."

Only in chemo-world can that be considered a compliment.

He and his wife shared a puzzled look. Clearly neither of them remembered her, so he just said, "How is your husband doing?"

"Well," she said.

Where was this husband? I wondered. And why on earth would you ever bounce around here alone?

I looked at the three of them. It seemed like the tall, thin man was still in treatment, that the husband of the blonde woman was in the clear, and I was somewhere in between. I very much didn't and don't want to be back on chemo. Despite the cheerful banter of the couple, I could feel the stress and worry. I also realized that, at any moment in time, I could be in any of their shoes, and they in mine. So much of life is out of our control. I was again grateful for where I was.

"Is this your daughter?" the blonde woman asked him. His companion in no way looked like she could be his daughter. But then again, cancer ages all of us.

"My wife," he said curtly.

The doors finally opened to the seventh floor and we all marched toward the doctors' offices and down our own, unique paths.

__._,_.___

Continued Chemo Vacation!

2011-04-04T09:52:00.000-07:00

My chemo vacation is extended! My PET CT came back clear and my CEA rose a tiny bit but remains in the normal range. This is the best news I could hope for. (Okay, I would hope for a stable CEA level but still, I'll take it.)

I am grateful and humbled and exhaling again.

This time, the test itself went fine with no trauma, thanks to the happy surprise of having Jubilent Julie, my fave nurse, access my port prior to the test.

Two days after the test, the drive to the doctor's office to hear the results felt a bit like going before a parole board: Would I be granted freedom? I felt physically well, but I know from experience that that is no indication of what is really going on inside my body.
When I got the news: happy happy joy joy -- I get another four weeks with no chemo, then a blood test. Assuming that is normal, another blood test the next month. Then, a PET CT three months from now.

Thank you for all your support in so many ways. Your friendship, your prayers, carrying the torch of hope when I couldn't, your forgiveness of my social lapses, your support of my wacky diet....it truly runs the gamut but is all so helpful to me and to my family.

It is hard to know exactly what is working. I continue my raw vegan diet. I'm doing herbs and tinctures, energy medicine, healing Masses, meditation, prayer, yoga, acupuncture, therapy....I'm sure there is more. I try to spend time with friends who are upbeat and have good energy. This is the best but also hardest to do, given all our busy lifestyles.

With the kids, we are feeling our way as we go, often reminded that our support systems are not necessarily theirs. For example, when we started down this path and A-man was four years old, he prayed regularly, sincerely and with an open heart for my recovery. When I had to go back on chemo last year, he decided that he didn't want to pray to a God who he felt wasn't listening. That led to lots of good discussions about God and Jesus, hopefully helping him to form his own beliefs. Recently, he told me that he is praying to Zeus and wants to go to a Greek church. I don't think those are connected, but, Greek friends: anyone want to take him there?

Last week, picking up A-man from school, he handed me a small piece of wood. On top of this wood balanced a large pile of sawdust. Obviously, he intended to carry this potential mess home. Even worse, he intended for me to carry this potential mess home. He was thrilled with his find so I swallowed my reservations and gingerly accepted the wood / sawdust combo. As we walked, he chattered away in his typically happy mood, then suddenly informed me that I was carrying magical dust. He encouraged me to take a pinch (of the sawdust) and blow it away while making a wish. And, oh, if I didn't mind wishing for what he wanted, please wish that I get well. So I guess that, in addition to prayers, we have pixie dust.

Besides their coping mechanisms, we are noticing that each of us takes our time time to acclimate to the news that comes with each new report. Tiron and I will hear any news and let it settle for a bit, getting used to it. Sometimes, not always, we'll share the news with the boys. This time, when I told them about the good scan, their response was, "You had a good scan before. That doesn't mean anything." It didn't dampen my enthusiasm, but did show me that they need more definitive, day-to-day proof of wellness in their world. We would all like that, I guess.

So, whether you are sharing prayers or pixie dust, or something else, thank you for continuing it with us. We all really rely on the sincere connection between us, and for that, too, I am grateful.

Love and blessings to you,
Marie

Chemo on hold!

2011-01-20T13:29:00.000-08:00

Thank you so much for your support, your positive thoughts and your prayers. I feel like you have really carried me along this path.

I'm kind of stunned to share this good news and almost don't believe it. Last week, I had a PET CT and got the results on Tuesday -- there is no evidence of disease. There is a small amount of activity on the PET but nothing on the CT.

It is kind of weird to be in this position, in a good way.

We talked with the doctor about options: Continuing chemo, modifying my chemo regimen, and taking a break (I like to think of it as quitting altogether) were among the choices, and I chose Door #3 (ha ha) -- I decided to stop chemo. They will monitor my blood levels in a month, and I get another PET CT in two months.

So that means, two months with no chemo. Since I have chemo every other week, that is four whole weeks that I regain in my life.

I'm relieved in so many ways, but mostly, I truly can't believe and process my test results. It really does feel like a miracle.

So, I'm trying to keep a steady breath, and remain really thankful and really hopeful. I'm not looking too far into the future, but for me, two months is long-term planning anyway. This whole thing really does force one to be in the moment.

In the meantime, my goal is to regain my strength and continue anything healthy. Thank you for ALL you have done to help get to this point.

If you want to read further, I'll share the story of the PET CT:

I went in for my PET CT on Tuesday of last week. In this test, they inject a radioactive substance into your veins. In the past, Nurse Barbara would insist she could stick me, and stick me she would -- a few times, always unsuccessfully, before then getting Nurse Virginia, who actually could access a vein.

This time, Angel Chemo Nurse Julie suggested that I use my power port (a device implanted in my chest). Why no one suggested that before, who knows? Anyway, Nurse Julie accessed the port just before my test and I made my way to the PET CT area of the hospital. It was funky to walk outside with tubes hanging out of my chest, but not bad.

When I walked into the nurses' office there, Nurse Barbara's face fell. I immediately told her -- I'm already accessed! I swear, she cheered. (She's truly a nice person when she isn't poking me with needles.)

I got the injection, drank the drink, and then laid on the table for the (20? 40? minute) test. After the test, I got a whole new nurse - Let's call her "Nurse Unnamed" -- whose job was to disconnect the needle from my chest.

Nurse Unnamed insisted on two separate ways of confirming that I had a power port in my chest. I tried to tell her that I had it placed at this hospital, she could look in the system. She did, but wanted more verification.

Now, for anyone who doesn't know, I can actually remove the needle from the port myself, at home. I even did it once! That basically demonstrates that it isn't complicated. But she kept refusing to disconnect me. She finally left me alone, I assume to see if she could figure out an alternative she was comfortable with.

While she was gone, I looked down at my body. I generally don't have body issues. I never thought I was too thin or too fat, never had issues with my boobs or butt, mostly felt like my body, and everyone else's, seemed to be just fine. Even with all my surgeries, I still didn't really dislike my body.

But right then, I was noticing my body in a new way. Because I can't wear my bra for the test, I didn't have my prosthesis on. I could see my ostomy bag and my port. So, some parts missing, and some parts added. I saw my scars from my surgeries: my mastectomy, my hernia surgery, my initial colon resection, the removal of a tumor from two summers ago, the original ostomy placement, the closed holes where the tubes were, the vertical scar on my belly from my most recent surgery. Typically, I think of them as a road map of my life. Right now, though, there just seemed to be an awful lot of them.

When did my body get like this? How did it get to this point? I was suddenly tired of everyone accessing my body in so many different ways, through cuts and needles and everything else I've done just to stay alive over the past five years. Sitting in that hospital room, along with so many others who were in chairs, on beds and in wheelchairs, waiting for treatment, I felt like a victim. And I hated it.

I decided that I needed to take back some power. So, I looked at my options. I could remove this myself. Or I could return to the infusion unit and ask them to remove it. Nurse Unnamed did not have to do something that she made her uncomfortable, and I would not be at her mercy.

Ironically, once I acted like I had options, she decided to go ahead and do it. Out of all the stressful elements of the test, I didn't expect the disconnect to be the most hassle. But it was manageable.

So hopefully, I can remember that, even in situations that don't feel great, there are options, and I have choices. Right now, I'm happy to have the choice to take a "chemo holiday" and hope it is a good, long one. Thank you again for all you have done to help me get to now, and for always believing that this is possible. That belief really expands my world.

Have a most excellent day.

Much love to you,
Marie

Visit to Dana Farber

2011-01-03T20:44:00.000-08:00

If you wrote to me last time around, please know that I read and appreciated every single email. It really lifts me up. The last round of chemo knocked me down hard and I couldn't answer emails or write anything. And then, when I started feeling better again, the kids started school vacation and it was like being on a moving train -- I just couldn't jump off. Plus, it was kind of fun to pretend for awhile that I wasn't a patient.

I took an extra week off chemo during the holiday. I cannot believe how good I feel from just one more week off! I feel like I have more patience (though my husband disagrees, but whatever, I feel good). I got to visit family, go skiing with the kids, take the dog out for walks. It was great!

And, I was able to consult with another oncologist, this time at Dana Farber Cancer Institute. I had spoken to my regular oncologist about options for treatments -- should I continue on this every two week cycle? Should I stretch it to every three weeks since my numbers are good? Should I take a "chemo holiday" to let my body recover from all the chemo? What are the risks and benefits from any of these paths?

I always think that another smart mind is helpful, plus I'm interested in working with someone who views cancer more as a chronic condition than a fatal illness. So, I was lucky to be able to pull some strings (thanks, Julie!) and see Julie's oncologist at Dana Farber.

Dana Farber is a sobering place from the moment you pull up. I see weathered women in wheelchairs and on oxygen and cannot help but wonder if that will be me. I see children going in for treatments, and my heart breaks into a million pieces. And, while I like to deny it, I have to face the truth that I am part of this group.

Every single worker I encountered at DFCI is unfailingly nice and helpful. The valet patiently explained how their system works. It's no different than any other system, but he still explained it nicely and didn't treat us like we were idiots. The woman who checked me in didn't even imply that I was incompetent for forgetting my Dana Farber card; she simply smiled nicely and handed a new one to me. The person taking my vital signs was upbeat without being annoying.

The waiting rooms are PACKED. I guess that says something about cancer in our society. Still, the other patients were nice, and some of them were chatty. The Pittsburgher in me enjoyed that.

The doctor (we'll call him Jay) was running late, but I was glad to see him. He reviewed all my written records on-line through the inter-hospital system, and my rock-star radiologist husband had all my radiology studies organized on disks so that Jay could view them. Given the detail Jay recited about my case, I have to assume that my own oncologist keeps fantastic and detailed notes.

I forgot to ask my oncologist for my CEA number last week (the blood number that I track to get some indication of how the treatments are working). So, I said to Jay, "I think that my numbers look pretty good. Do you want to look at the trend?"

Then, while he was accessing the trends, looking at the screen, he said, "Your CEA looks good at 1.6."

Now, I never saw his eyes move from the screen, and I tried to keep a poker face, but he was paying close enough attention to my body language to then say, "You didn't know that, did you?"

I was very impressed.

Jay asked questions about how I am handling the current chemo treatments, both physically and emotionally, and did a quick physical exam. Then we had a conversation.

Jay was direct with me, and optimistic without sugarcoating things. He can talk in decision tress, which is how I think, so communication felt easy. Here is the basic bottom line, as he described it, or at least, how I heard it:

"Blood numbers look good, so it is possible, unlikely but anything is possible, so it is possible that all the cancer cells are gone. (BTW, I LOVED that he entertained that possibility at all. Loved it.) If that is the case, you are doing chemo needlessly.

Or, there could be some cancer cells in there that we can't see, hiding out. If so, you could continue to do chemo and try to knock those out.

Or you can take a break, let your body recover from chemo, and we could monitor you every two months. There were two studies done, basically showing that longevity is not impacted by a break like this, and overall quality of life is better.

Or, you could spread out the treatments to every three weeks, but I wouldn't recommend that, because we don't know if that is as effective as every two weeks (my current regimen). So you might get all the side effects of chemo with questionable benefit."

He did mention that I should get PET CTs more often than I am, and I take total blame for that. My oncologist also recommends them more frequently, but I have no more accessible veins in my arm and only have one or two accessible veins in my hand, so I'm very protective of those. Plus I hate getting all the radiation from that test.

So, here is my plan:

I will do chemo this week.

I will schedule a PET CT asap

Then, based on the results, take it from there.

Wish me luck! And a good chemo week. And most if all, thank you for hanging in there with me.

Two other quick notes.

1. Here is an article I wrote about treating cancer as a chronic condition:

http://commonhealth.wbur.org/2011/01/chemotherapy-for-life/

Feel free to write comments there, even under a pseudonym or anonymously. It helps the owners of this blog, and it is interesting to me to read them as well. :-)

2. I'll close with this story: Last weekend, Tiron really wanted to have our caricatures done by this one artist guy. We don't know him at all (other than his work) and he knows nothing about my health.

On the drawing, above my head, he wrote, "Don't Stop Believing." I know that it is from Journey, but I took it to heart.

Thank you for continuing to believe.

Love, Marie

It was a good chemo week!

2010-12-14T09:56:00.000-08:00

Thank you for all your emails, well wishes and prayers. I completely SAILED through the last chemo, physically. I have to admit that, while I am usually fairly upbeat, the past three weeks had me totally down in the dumps. It felt like there was sad news and endings everywhere I turned, and I kept relating all of it to me.

Some of the endings are cancer-related: A friend of a friend has been amazing at supporting me by being open about her path of living on chemo. I learned that she is no longer doing chemo, and not because she is miraculously cured. Though I've never met her personally, she really has been a rock for me through all of this.

Then, of course, there is Elizabeth Edwards. I felt that, if she could live forever, then I could, too. But then, she died. Guess I set myself for disappointment there.

I've been having really disturbing dreams about dying.

Even the songs on the radio seemed to reflect cancer and loss. I swear that every time I turned on the radio, I heard this Christmas song about a little boy trying to buy shoes for his dying mother who might not make it to Christmas Day. Gut wrenching sobs. Ugh.

As if those weren't enough, the yoga studio I attend is closing. On the surface, this doesn't sound like a big deal. I attend a weekly class, and lately, I've only been attending every other week. That computes to twice a month. Not often.

It's a small studio; I never counted the students, but there were maybe 18 max in each class. I first met Joseph, the teacher, during a time in my life when I really needed to laugh. You wouldn't think that one would find laughter in a yoga class, but I laughed through my entire first class with him, and the laughter pulled me back to the class again and again.

Many of the students were regulars, and despite my nine years there, I knew few of their last names or what they do outside of yoga. But when I got the message about the studio closing, my stomach sank. I realize that we've formed a community. I would miss Joseph and the entire community. I had no idea how important and strong this thread was in my life.

I was so tired of everything feeling like it was going away. And I was tired of feeling sad. Yes, I know, endings can make way for new beginnings. Sometimes it is hard to really believe that.

Still, we all go about each day, doing our thing, and I suddenly noticed that it was more important to me, personally, to support the decision of my instructor than to be sad about it. And, surprise: It felt better, too, like I was lifting my head up again, and able to look outside myself.

I have no clue what the future holds. I hope it holds more surprises like this, elements that light the way of how to feel better.

I suppose that our yoga community will stay in touch, at least for a time. I suspect that it will morph, as we all change and grow, but we are truly part of each other in ways I never knew, and it is nice to actually be aware of that.

I'm taking small steps forward. I'm setting up a yoga room in my house, or, more accurately, asking my father to do that while he visits this week. I've stopped listening to the radio for awhile. And I'm going to Dana Farber to get a different perspective on my health situation.

The laughter - well, some things are just so life-affirming, and laughter is one of them. That will have to stay.

I hope you can find real joy today, that makes you smile so big that you have to laugh, that something tickles you in such a way that you see the humor in it, and that you can feel the light shine right through you.

Chemo again today -- I'm writing this from my chair! Your prayers and good wishes are always welcome and help to make this all okay.

Love,
Marie

Managing cancer and going for world peace, one step at a time

2010-11-30T09:27:00.000-08:00

Thank you for your thoughts and prayers, your good will and your support, for me and for my family. Besides the huge impact on me and my health, I know that it helps Tiron immensely, and the kids as well. For them, as for all of us, the stress pops up during what often seems like unlikely moments, and we appreciate how you are handling it along with us. Thank you.

It might seem like your efforts are small, they are huge for us. I was reminded of this during a recent talk with my doctor. People comment that I am managing cancer as a "chronic disease" (as opposed to a fatal diagnosis), and I like that mindset. Though I still hope to get rid of this cancer, if I can't, well, I'd like to LIVE with it.

As I thought about this mindset, I started noticing more and more subtleties. For example, my doctor would say, "When this chemo stops working...." when I would prefer to hear, "IF this chemo stops working...." That one word difference can send my emotions diving to the bottom, and after our conversation, I was left alone to stand up, brush myself off, and somehow climb out of the hole I was in.

This kind of knock-down was not exclusive to my doctor. It happens, for example, when someone honks their car horn: I happily drive along, feeling the breeze from the open car window and singing away, then that horn blast goes right through me, shattering the good will into shards flying out the window.

I do it to others as well, like when I come down too hard on the kids for a relatively minor infraction and watch the change in their eyes. Or when someone is blocking my way and I say "excuse me" with a bit of edge in my voice. Though unintentional, the other person ends up absorbing my ill will, where it either does some damage to them, or it affects their mood and they pass the ill will along to someone else.

If we can pass along negative feelings with small thoughts and actions, we can certainly pass along positive ones, and we feel that impact when you share yours. They may seem to be small, but they are powerful, and hopefully we are passing those good feelings along to others.

So, thank you, for all you do for our lives, and also for the feelings of peace and good will that you are sending out to the world as a result.

Chemo day for me -- keep those good thoughts and prayers coming! :-)

Love,

Marie

P.S. Some folks wanted to know about prior emails. If you want to check them out (no pressure), look here:

http://adventures-in-colon-cancer.blogspot.com/

Skipped last chemo; next one on WEDNESDAY

2010-11-08T20:11:00.001-08:00

Thank you so much for all you have done to show your concern, always and especially during the past four weeks. I apologize for being out of touch, but do appreciate all the check-ins.

I also want you to know how much I appreciate your flexibility with me and my family. I feel like I am always asking for exceptions, making or canceling plans at the last minute, forgetting things that I should be expected to remember. I know you have been cutting me alot of slack for a long time. I hope it hasn't been too hard on you, and I truly believe that helps in reducing the stress in our lives and makes things so much easier to handle. We all really appreciate it, especially me.

Overall, I'm doing just great. I feel really good and my energy level feels normal. In fact, when I went through this a few years ago, I did six months of chemo and I was totally wiped out. So far, it has been nine months of chemo. I don't know if the mix is different, but I am grateful to have the quality of life that I have.

My most recent chemo, however, threw me for a loop. I was sick for eight days following it and couldn't even get on e-mail. Then, once I could get on email, my computer broke. So I am quite behind on that.

By the time I felt better, my next chemo session was only days away and I didn't think my body was ready for another hit, so I skipped that session. That was a bit scary to me, and I wondered if I was giving any cancer cells time to grow. Plus, I got sick a couple of times during my off-weeks, but I have to say, the good days have all been great!

I would normally go in for chemo tomorrow, Tuesday, but Aidan has his second grade Harvest Feast at school on Tuesday night. It is a big deal for him, and I find it pretty exciting, so, for this week, I'll wait one more day and do chemo on Wednesday.

This decision has ripple effects. Two weeks from now is Thanksgiving. I wanted to have chemo on Monday that week in order to feel better by Thursday. But this week's Wednesday chemo means that Monday will be too soon afterwards (does that make sense?). So I will skip chemo again during Thanksgiving week.

Alternatively, I could be wearing my infusion pump during Thanksgiving dinner -- I could dress it up for the photos. Maybe have feathers coming out of my chest? But the taste of chemo doesn't seem to complement turkey (or raw foods). Plus, the steroids I take make me short-tempered and crazy! Maybe skipping is a better plan. Everyone has been so great at putting up with me; I don't want to push it.

Skipping ALL of these would be truly lovely, though it doesn't feel like a viable choice right now. Please do think of us this week and send your prayers and positive thoughts, especially Wed - Friday. Thank you for hanging in there with us. We are so blessed that you are in our lives!

Love,
Marie

Good CEA number again -- whew

2010-10-12T10:07:00.000-07:00

Thank you for being there -- just wanted to share that I got my CEA number tested last time and it came back at 1.8. Below 2.5 is considered in the normal range, so I am both relieved and a little scared. Scared because I worry that it can only get worse, but I try not to focus on that.

It can be hard to stay positive, because though I feel great, the doctor arrives listing all the ailments that i could possibly have, asking if I felt any of them. I hate that it plants all that in my head.

However, the other big fun news is that Julie, my rock star nurse, is back from maternity leave! So, all is right with the world.

I'm sitting here in the infusion room, with the needle in my chest and the tubes hanging out, and just feeling so lucky that you are out in the world, doing your thing, maybe singing to some great music as you sit in traffic, chatting with folks you are happy to bump into, moving some project forward. I'm psyched to be doing all those things in just a few days, and it is great to know that it is all happening already.

Sending tons of love and gratitude your way, and all the blessings I know how to muster up.
Marie

Back from Paris and Lourdes!

2010-09-27T10:47:00.000-07:00

Thank you for hanging in there with me. I get concerned that this road is long and boring for you, and a bit self-conscious about all these e-mails, but really appreciate both your support and your presence in my life. Thank you.

My last chemo session went well, but the new blip on the scene was that something was literally growing out of my stomach. It is where I was opened from the surgery, and it looked like colon and was freaking me out. Some things are just meant to stay inside your body and remain unseen! Plus, we planned to leave for France in a few days (more on that later) and I was worried this could change those plans.

While all this was going on, Tiron got diverticulitus and had already scheduled an appointment to see my colorectal surgeon for that. So I muscled in on his appointment. We both saw her at the same time and got the two for one rate (two charges for one appointment). He got antibiotics, I got that thing burned off (yikes, but glad to have it taken care of), and we were good to go.

For the better part of the past year, I’ve been drawn to go to Lourdes. I’m not a Francophile, I am not a frequent traveler, and frankly, I’ve never felt a need to go to a religious site. So this was a surprising calling.

First the dog, which I never thought I would want but love, and now this.

The question was, how to get there. Between chemo, the kids’ schedules and needs, my funky diet, and the emotional hurdle of leaving the kids for the first time and going that far away, it just didn’t seem to be do-able. Still, I was drawn.

Have you heard the story of the woman in the flood? It goes something like this:

A flood was coming and the police drove by a woman standing on her porch.
“We are evacuating the town. Get in our car and we’ll drive you out,” they said to her.
“I’ll wait here and God will come for me,” she replied.

As the flood waters rose, a rowboat went by. The rowers said to her, “Everyone is evacuating. Get in our rowboat and we’ll keep you safe.”
“I’ll wait here and God will come for me,” she replied.

The flood waters rose higher and she sat on her roof. A helicopter flew over and the pilot said, “The town has evacuated. Get in the helicopter and we’ll get you out of here.”
“I’ll wait here and God will come for me,” she replied.

After she died in the flood, she asked God, “Why didn’t you come for me?”
To which He replied, “I sent a car, a boat and a helicopter. Why didn’t you take them?”

One of my favorite things is when God works through people, and I feel like that is what happened here. Our dear friends invited us to their apartment in Paris. Coincidentally, it was during a week that worked well for us, both kid- and chemo-wise, and we decided to go! There was no way we could have done it without them (and my parents to watch the kids), and I truly feel like God was working through Julie. Thank goodness she let him!

So, after the chemo and surgery appointments, we flew to Paris. It was my first time there. Paris is wonderful, of course. We did all the things I love to do: visit with friends, wander the streets of a beautiful, vibrant city, shop for food and cook. Well, I didn’t cook, since I eat mostly raw, but we ate our meals at the apartment in order to accommodate four different diets. So I was able to mostly stick to my diet. The baguettes and cheese are impossible to resist!

Then Tiron and I headed to Lourdes.

For you non-Catholics, Lourdes is a pilgrimage site. Think, Mecca. I never in my life thought I would be doing a pilgrimage, but then, life is full of surprises, especially these days.

I met some wonderful people. Father Brian (pronounced Bree-un) and Father Patrick, both from Ireland, shared jokes and stories with soul. Anne and Claire from Scotland were like two angels who appeared out of nowhere and guided me on my journey. Plus, they told me they thought I was in my 30’s – loved that! Or maybe I just didn’t understand their Scottish accent…Little Monica (age 5 ½ -- she insists on the “1/2”) from Rochester was so joyful and fun, skipping as we retraced the difficult steps of life of St. Bernadette.

The place itself is incredibly large. There were over 25,000 people there and it didn’t feel crowded. In two days, I only saw a portion of it. There were two cathedrals and numerous chapels, the Grotto area, the baths, a bookstore, museum, information booth, and much more. Except for the bookstore items and candles, everything was free.

I have no idea how this place operates and pays to keep the lights on. It was clean without constant street sweepers, had no graffiti, and, despite being so welcoming and open 24/7, had no homeless people sleeping on the benches or police patrolling the streets.

It felt calm and peaceful, interesting and reverent. And, like many places that touch the soul, difficult to describe.

People go to Lourdes for miracles. I’m not sure whether I got a miracle, but I don’t feel like I was there looking for one (though, I would not turn away a healing miracle, in case anyone is listening!). I just felt like I had to be there. Anne and Claire from Scotland said that it appears I was “invited by Our Lady” and that felt right – that I was invited there and just had to go. The pull was so strong. The reason may not be clear to me, but that is okay. I did what I had to do, and I hope I did it well.

It is clear to me that I couldn’t have done it alone. I appreciate your prayers and good wishes, which give me energy and keep me going. I appreciate all that you did to take care of the kids (those of you who are local) – thank you for that. They had a great week and felt loved and secure.

Thank you for all that you continue to do for all of us, and thank you for sharing all this with me. One of the Stations of the Cross depicts Simon of Cyrene helping Jesus carry the cross, and making me think of the ways that others help us carry our burdens. You truly do that. This path would be entirely different and way more difficult without you. You make a difference in our lives.

Chemo on Tuesday….

Love, Marie

P.S. If you are interested in the stories from my experiences at Lourdes, I will be posting them on
http://adventures-in-colon-cancer.blogspot.com/
or let me know if you prefer an email.

To keep them readable, I wrote a different post for each event. They aren’t all there as I write this, but I expect to have them up soon.

If you want to read only one story, I would recommend the one on the baths:
http://adventures-in-colon-cancer.blogspot.com/2010/09/baths-at-lourdes.html

Lourdes: The Baths

2010-09-24T08:00:00.000-07:00

The Baths
Friday, September 24, 2010
8:00 a.m.

Our Lady of Lourdes identified an underground spring to Saint Bernadette. Today, you can bathe in the water from that spring. I decided to do this. Everyone warned that the women’s lines were hours long. They advised me to arrive well before it opened and to plan my day accordingly.

The baths were open from 9 – 11 a.m. and again from 2 – 4 p.m. Since I had only one day available to do this, I decided to aim for the 9 – 11 slot, using the 2 – 4 slot as backup. I didn’t know what they did at closing time; did they send everyone away who had been waiting all that time? I planned to get in line by 7:15 a.m. At that time, I may not be first in line, but I expected to get in.

When the alarm rang the next morning at 6:30, the baths suddenly seemed less important than resting.

Dragging myself out of bed at 7:30, I was glad to see that last night’s thunderstorms were over and, while the skies weren’t clear, it stopped raining. I put on the only outfit I had: a sleeveless summer top, a light cotton sweater, a pair of tights and flat shoes. I grabbed my raincoat just in case I needed it.

When I reached the baths at 8:00 a.m., all 17 covered rows of seating (with 12 – 14 women each) were full, so I filed in behind about 20 women standing in line outside between two white metal bars. The bars were set far enough apart for one person to stand comfortably. Two could squeeze side-by-side.

As I waited, a few drops of water fell on my head from the trees above. No big deal. I looked at the sky: clear on one side, and dark and foreboding on the other. Ha – like life. I hoped that the clear side was pushing out the dark one.

The two women ahead of me looked more like they were going out to a club than to the baths. In their mid to late twenties, tall and thin with long, straight hair, stylish clothing, nice make-up and finished nails, they held themselves confidently. One of them took a tissue to carefully wipe off the railing before she leaned on it. It reminded me of something my mother would do, and I briefly thought, they must be Italian.

Soon, I noticed the conversation of the three Italian women behind me, who were about my mother’s age. They stood on the shorter side of average and a bit stocky, well-dressed with beautiful jewelry and handbags.

My Italian is rusty and like a toddler’s at best, but it sounded like one of the women needed to go to the bathroom. So, I moved aside to let her pass, as did all the women ahead of me.

She was almost to the front of the line when, whoosh – a thin woman with short grey hair who stood all of 4’11” blocked the way. Standing squarely next to the metal barrier on her right, she slid four long, thin candles across her stomach until they reached to the metal bar on the left, effectively blocking the way. The Italian lady talked with her, but Candle Lady apparently did not understand Italian. So, Italian Lady walked back along the line to return to her spot.

In my observation, every group of Italian women has one strong personality who directs the group, and this was no different. Strong Italian Lady said, in no uncertain terms and in a slightly demeaning tone (loosely translated), “What do you mean, she said no? You just go back there, say, ‘Mi Scusi’, then you walk by.”

They argued a bit over this (as the Italians I know do) but Strong Italian Lady won and Bathroom Italian Lady tried again. And again, when she got to the Candle Lady, whoop, the candles came out and blocked the way.

This time Candle Lady wouldn’t talk or even look at Bathroom Italian Lady. She just stood there facing forward, holding her candles sideways.

I thought this was hilarious and giggled out loud. Strong Italian woman started to talk with me. In Italian.

“Non parla Italano,” I said, meaning to say, “I don’t speak Italian.” In fact, I said, “You don’t speak Italian,” essentially confirming the fact that I don’t.

“Ah, comprende Italiano, no?” she asked with a knowing look. “Un poco?”

“Pocino pocino,” I replied, making a motion of “tiny” with my thumb and forefinger.

Bathroom Italian Lady returned again, defeated and annoyed.

More words, but this time from the girls in front of us, confirming they were Italian. Gorgeous Strong Italian Girl spoke up.

“That woman is crazy. You have to go to the bathroom.” She waved her hand sharply at the gentleman monitoring the line, as if she wanted to order a drink at the bar, and he came right over.

“She needs to go to the bathroom.”

The man told Bathroom Italian Lady to come with him, and she left the line and followed. A few minutes later, as she made her way back to us through the line, she shot daggers with her eyes at Candle Lady. Such good Catholics. I guess we all have room for improvement. As for me, it was good for another laugh.

At some point, a woman started to lead the rosary in French, with intermittent hymns. I love the rhythm of the rosary in any language. It is repetitive and meditative, even if you don’t know what they are saying.

After an entire rosary in French, another woman started one in Italian. The Italians around me responded, almost as in a Pavlovian way.

At one point, the Ave Maria was sung, and everyone automatically sang the refrain.

The rosary continued in French and Italian, French and Italian, interrupted only by hymns, until the doors opened at 9:00. A man gave instructions in French, and several of the women seated in front moved into the bath area.

Though the line now moved ahead, the Italian women and I were still outside, now standing in light rain. Strong Italian Lady shared her umbrella, then offered a chocolate square to me. I said gracie for the umbrella and no thank you for the chocolate, clearly offending her.

“Oomph” she said, simultaneously brushing me off with her hand while returning the chocolate to her designer handbag. I recognized that sound / motion pair. It meant, “Fine. Your loss. See if I offer you anything else.” Fortunately, she kept her umbrella up for me. I was starting to get cold and didn’t want to be wet, too.

The irony was not lost on me that I was headed to a bath. With water.

About five or ten minutes later, the line moved forward again and we could sit on the benches under the roof. I sat between the two gorgeous girls from Naples and the three older Italian women. They occasionally conversed across me, and I loved hearing all the Italian.

By now, I was definitely cold. I pulled a hat and gloves from my handbag, which helped a little but not a lot. They were letting women move ahead at roughly the rate of 4 women every 5 minutes, so the line kept moving enough to give me hope. Each time, we would either stand and walk to our new seats, or shuffle our butts along the bench, depending on how far we got to move.

The rosary and singing continued. Women got up to go to the bathroom and returned to their seats. Though it was still pouring rain, husbands arrived and waved from the walkway to check on their wives in line.

When the Italian women’s husbands arrived, one woman said critically, “Look at him. No umbrella. Crazy.”

It made me smile that her first comment was basically a critical one, and that he obviously didn’t really mind.

When I was about halfway to the baths, a woman on the bench in front of me waved me toward her. I leaned in, wondering what on earth she could need from me but happy to help. Smiling, she grabbed my upper arms and rubbed them to help me stay warm. I didn’t realize that I actually looked as cold as I felt. I considered leaving to take a hot shower, but the line moved just enough to keep me in it. Besides, if all these women were doing it, I can do it.

Later, Strong Italian woman reached over to me and rubbed my arms and back. It reminded me a little of a story I once saw about the Holocast: As the women were headed to the showers, the older women took care of the younger ones. I tried to push that image out of my mind.

After three hours of sitting, standing, talking, rosaries and hymns, we made it to the front bench. I had no idea what these baths would be like, but I suspected they would be cold. It is spring water, after all. I wasn’t excited about more cold. I don’t even like a cold swimming pool on a hot day. I assumed they would be outside, in the rain.

But, the next step was inside to change and there, things felt like they moved a bit faster. I waited so long to get here, I wanted it to go a bit more slowly. But, not a choice.

A woman with a warm smile appeared from behind a curtain and beckoned me into one of the changing rooms. As I approached, she asked what language I speak. A woman who spoke English with a lovely French accent suddenly appeared and led me further into the room. It felt like a group changing room in a discount women’s clothing store, except that each of the five women changing had another woman behind her, holding a blue sheet for privacy.

My helper gave instructions on how to change (“take everything off, and if you are wearing a bra, hold it in your hand”) and pointed to the hooks for my clothes. She held a blue sheet around me for privacy while I undressed, then wrapped it around my shoulders and told me to sit in the plastic chair that is under the clothes hooks.

I noticed that the floor is surprisingly dry for a bathing area through which hundreds of people just passed. Also surprisingly clean.

My sheet is a bit wet, though, and it grosses me out to sit in a plastic chair that held who knows how many naked butts. I opt to stand. I now feel warmer than I did outside, but still a little chilled.

My helper repeated instructions that I saw on a wall chart: Collect your thoughts and choose an intention. Stand in front of the curtain, and I will be called when it is my turn.

I tried to focus on my intention, but I I could hear a big splash in the bath. Did someone fall in? Do we need to jump in? It made me wonder what was behind the curtain. I now assumed that I would step outside into the rain and have to jump into a big, deep puddle with lots of other women.

I was next. The curtain opened, and I was led through.

I’m not so good at going with the flow and like to know the lay of the land before I dive into anything, so I was a bit disoriented. Plus, I wanted to take everything in and it all just seemed to be moving so quickly.

Thankfully, the baths were inside! There were walls around it, and I was the only one going into it right now. The bath itself was stone, long and narrow in front of me, with two steps leading down into it. I wondered if I could just do a step or two, if that would count or if I would have to take the plunge.

The water was surprisingly clear. I don’t like hot tubs because they either feel like I’m getting into someone else’s bath water, or that I am soaking in chemicals. But frankly, I have seen more backwash in my glass of drinking water than there was in that tub, so I was amazed and felt okay about going in. Not that anyone would have asked me.

Two women, one standing on either side of the bath, each held one side of a twisted white sheet, wringing it out together as the water fell into the tub. I was relaxing a bit, then surprised as the woman who led me in now held my shoulders while she reminded me to focus on my intention. She directed me to raise my right arm, which I found a bit confusing, so she did it for me. Then suddenly, the three women removed the blue sheet and replaced it with an ICE COLD WET ONE.

I was adjusting to the shock of having a cold sheet wrapped tightly around my body when I was told to take the first step into the bath.

I did and, as cold as the water was, the sheet was colder and distracting me. I really wanted to get rid of it and just do this without it on. I also wanted to go slowly into the bath, like I do with a cold swimming pool, but the other two women (who were previously wringing the sheet) grabbed one arm each and insistently led me into the deeper part of the bath. One of them told me to sit while my brain responded “Are you crazy? This is freezing!” Then they told me to relax and basically pushed me down until I was sitting in the bath.

I was so focused on freezing that I didn’t exactly revel in the experience. I think that I briefly remembered my intention but definitely forgot to say the prayer I was supposed to say while in the water, and before I knew it, they pulled my arms up to guide me out of the bath and were saying the post-bath prayers of thanks to Our Lady of Lourdes and to Saint Bernadette. I was supposed to say those with them, but I was more than two steps behind.

They put my bra on, replaced the blue sheet, and guided me through the curtain to the dressing room.

When I started to get dressed (again, with someone holding the blue sheet for privacy), I noticed that most of my body was already dry. How on earth was that?

I walked out of the bath house alone. It was pouring outside, and I had no umbrella. Cold bath. Cold rain water. Water was everywhere.

Lourdes: In need of healing foods

2010-09-23T12:00:00.000-07:00

Lunch break

Thursday, September 23, 2010

12:00 noon

I stopped at the bookstore and bought a few small books, then met Tiron for lunch. He had done a tour of Bernadette’s life that morning and recommended it for me for the afternoon.

After all the walking for the Way of the Cross, I didn’t feel like wandering the city. So we decided to try the hotel restaurant for lunch.

The hotel restaurant had two salads. One had lettuce, eggs, tomatoes, duck and pine nuts. I could eat the lettuce and pine nuts. The other had lettuce, goat cheese and olives. I selected the first.

The pine nuts arrived charred, but the service was great. The salad was large enough to hold me over for the afternoon, and I cheated on my diet with a bit of mediocre bread.

For a town that attracts people who need healing, the food could be healthier.

Lourdes: The Way of the Cross

2010-09-23T10:30:00.000-07:00

The Way of the Cross

Thursday, September 23, 2010

10:30 a.m.

The church had a printed schedule of events for the day (yay! I love having things written down!), so I took one, and Rose, my English-speaking guide, walked back with me to the statue where we first met.

I had a lot of questions about events I heard of but were not on the schedule, and she answered many of them. I wanted to know where the Grotto was, how to get holy water, and any information about the baths.

So, she walked with me to the Grotto, which was sort of on the side of and below the cathedral. Past that were the baths, and I could see women waiting there. She described where to find the water from the spring.

Then she had to go to her next job, and I needed to find Fr. Patrick if I wanted to do the Way of the Cross.

Five of us joined Fr. Patrick for what I think of as the Stations of the Cross. He asked if we wanted to do the High Stations or the Low Stations. I didn’t know the difference.

Turns out, high and low were literal terms. The High Stations are on a mountain, so you walk up high. I didn’t get a chance to find the Low Stations, but I assume there is not as much climbing involved.

We started up the hill. Fr. Patrick is from Ireland and full of stories and jokes. We reached the first station and stopped there.

The stations are beautiful gold sculptures and a bit modern. They are positioned on the hill above the path. This first one had steps leading up to it, and I saw women on different steps, kneeling, praying, and then WALKING ON THEIR KNEES to the next step. On the next step, they stopped to pray, and again, walked on their knees to the next step.

On one hand, I kind of hoped he wouldn’t ask us to do that. There were more steps than I could count, and we’d be doing stations until dinner if every stop was like this. On the other hand, I’m still the person who believes that extra credit is part of the test, and I wanted to see if I could do it.

Well, we didn’t do the steps, we stayed at the bottom of them. Father Patrick started the pattern he would continue for all the stations: Read a brief passage from his book about that station, then tell a modern-day story of what that station means to him.

I remember one in particular right now. For the station where Jesus was nailed to the cross, he said that it makes him think about people in wheelchairs, or hooked up to machines. They can’t leave those, and are basically nailed to them.

He asked us to do the walk in silence, and gave us this prayer as a suggestion for reflection while we walked:

Alone with you, O Lord, I journey on my way.

What need I fear when thou are near

O King of night and day.

As we walked, I couldn’t seem to remember the words. I was feeling a little inept.

At some point during the stations, I always start to cry, and this was no different. Now I had no prayer, and tears. Ugh.

The last two stations are on the downhill slope. The station depicting where Jesus is buried is literally in front of a cave in rock in the hill. Not only is it quite moving, I thought it was cool that the topography worked out that way. And the final one, where Jesus is risen, also uses the natural rock in the hill.

At this point we were done, so I asked Fr. Patrick one more time for the words to that prayer (and wrote them down), we said our goodbyes and returned on our own.

Lourdes: The English Mass

2010-09-23T09:00:00.000-07:00

The English Mass

Thursday, September 23, 2010

9:00 a.m.

We climbed the steps to the second floor of what used to be a hospital building, then turned left into a room where the English Mass was held. Later in the day, I noticed that the French, Italians, Germans and other Europeans have their masses in the Cathedral, the Grotto, and other places that are larger and feel more like a church. But there are fewer English-speaking pilgrims, hence, a smaller space can be used.

I took a seat a few rows back from the front. Father Brian (pronounced Bree-un) started Mass by acknowledging Padre Pio, and the connection to that familiar (to me) Italian saint helped me to relax.

Fr. Brian’s friendly approach built community throughout the Mass, at various times telling jokes, having us introduce ourselves, and asking where everyone was from.

I was surprised to find that there were only a handful of us from the U.S. Actually, I didn’t see any other hands raised (besides mine), though there must have been at least one other. Lots of folks from Ireland, England, Scotland and Wales as well as Singapore, Malasia and India. I saw the nurses we met at the café the night before, who had recommended the Day Pilgrimage to me.

There were three other priests at that mass: one from India, one from Malaysia, and…I forget where the other was from. They briefly introduced themselves and had various roles leading the Mass. None of the hymns were familiar to me, but everyone else seemed to know them.

The best part: When I left, there was a written schedule of options for the day. I love that!

Lourdes: Meeting our Guide

2010-09-23T08:30:00.000-07:00

Meeting our Guide

Thursday, September 23, 2010

The religious area was one block from our hotel. I planned to do the religious parts of the trip on my own, but Tiron came with me to make sure I was settled.

We walked past all the trinket stores, crossed a street, then through the large gates and down a wide hill.

At the bottom of the hill, we easily found the statue of Our Lady of Lourdes and starting looking for the green sign that said Day Pilgrim in English. We noticed Day Pilgrim signs in other languages, as well as people putting flowers in the fence surrounding the statue.

This place was MUCH larger than I expected, in every way. Across from the statue of Our Lady of Lourdes, there is a cathedral with beautiful mosaics. There were also two large, temporary white signs in front of the cathedral saying Lourdes Cancer Esperade. (Lourdes Cancer Hope) in large green letters. The cathedral had a paved area in front of it, I suspect for gathering.

The information building was nearby with a sign pointing to the bookstore around the back. There were a few other relatively non-descript buildings. One had a large sign in English: CONFESSIONS.

Looking back toward the entrance, there was a steady stream of pilgrims filing in.

Among them walked a woman carrying the green Day Pilgrim sign in English. She was thin, with grey-blonde hair, maybe in her late 60’s. She had pale skin and a calm voice.

“Hi, I’m Rose. I’m from the United States, and I have the honor of being your guide.”

Rose described the schedule for the day. I could do any of it that worked for me.

9:00 Mass in English with Fr. Brian (pronounced Bree-un)

10:30 Way of the Cross with Fr. Patrick

2:30 Tour of St. Bernadette’s life in Lourdes

5:00 Eucharistic procession

9:00 Candlelight procession

Tiron returned to the hotel, and my day began.

Lourdes: Arriving by train

2010-09-22T20:00:00.000-07:00

Arriving at Lourdes

Wednesday, September 22, 2010

8 p.m.

Tiron and I took the train from Paris to Lourdes and arrived around 8 pm. It was dark, but neon signs identified bars and brasseries. In a weird way, it reminded me of New Orleans, though I doubted we’d see strip bars and drunken frat boys.

Earlier that day, we visited Notre Dame in Paris, and the place felt more like a museum than a church. Tourists ignored the signs marking prayer areas and requesting silence as they laughed, talked, and took photos. I wondered if Lourdes would feel touristy and commercial as well.

We grabbed a taxi to our hotel. The streets around our hotel were filled with more neon signs identifying restaurants and countless shops selling the statues, medals, and trinkets that we Catholics seem to collect.

Our hotel was bright and modern. We checked in, then wandered off to find the recommended restaurant for dinner.

As we walked, I kept an eye out for shops that might sell fresh vegetables, but saw none. As we passed a café, we overheard two women, dressed in white nurses uniforms, speaking in English, so I stopped to ask them about the things we should do in Lourdes.

“Well, if you have only one day,” they told us in their beautiful Irish accents, “we recommend the Day Pilgrimage. At 8:30 a.m., find the green sign at the statue of the Blessed Virgin” (as if I knew where that was) “and your guide will take you from there.”

By now, it was 9 p.m. and people carrying candles were walking from everywhere, all in the same direction. I recognize the makings of a candlelight procession when I see one, but I decided that we should get food and start fresh tomorrow.

Love is in the air!

2010-09-15T18:52:00.001-07:00

I wrote this note before I got this week's chemo but am just sending it out now....

-----------------------------

Thank you so much for your emails, phone calls, and cards, as well as your comments when I see you. I realize that I don't always respond or call. I generally intend to reach out to you in return, but I sometimes can't at that moment, and then, later, life starts whizzing by and I don't return to it all. Please know that I remember your words and your sentiments as I go through my days. I truly carry them with me, and they carry me, too. Thank you. It's hard to explain the expansive feeling this all gives me.

This round of chemo impacted me for more days than usual. Typically, I feel better by Saturday morning, but this time, I was still wiped out on Saturday night. On top of that, the awful stomach cramps returned the following Wednesday. I was happy that they passed by the next morning.

Thankfully, all of that is history and I feel great again. And when I am feeling good, it is hard to remember how bad it all felt. Then everything seems to be okay, and life is sunny again.

The big news here surrounds the start of school. Like many families, we loved our summer together and hated to see it end, while we were all ready and eager for school to start.

Aidan returned to school on the day after Labor Day, and he is in a "loop" year, where he has the same classmates, teachers and classroom as last year. It had been explained that, because this is all very familiar, it is like an extension of last year and the kids can jump right into learning. I was a bit skeptical, mostly because I still carry a bit of attitude that says, "my son doesn't necessarily conform to the norm." Still, I kept a hopeful eye out for signs a smooth re-entry to school.

On the first day, I was surprised by how familiar it all was to ME. I loved seeing the familiar, friendly faces of parents who have become our friends enter the classroom with their children, everyone full of summer sun and energy. The animated conversations made the air sing, as the kids were saying hello to each other and the parents were saying good-bye to the kids.

I took a moment to watch the dynamics of the children in the classroom. I am not a naturally child-centered person. I often have mine tag along with me rather than structure my day around them. I don't understand what goes on in their brains, and I'm not the most patient person on earth. In fact, there was a time in my life where I viewed parent-child affection as something akin to the feelings that can arise between kidnapper and captive. I'll admit, I have come to adore my own two little kidnappers!

And, sure, I liked Aidan's classmates. But I was blown away to find that I was suddenly in love with each and every one of these kids. I love how one of the boys starts his day by reading a book, how a little girl likes to draw by herself as she slowly joins her friends in conversation, and was surprised to realize that I even know these little details about them, that I noticed that without really knowing that I did. I love the way they interact together, how they invite others into their circle, how they push and shove to make space for themselves and for their friends.

As I watched Aidan happily playing with a friend he missed over the summer, I realized that I love these kids individually and as a group and am so thankful that he has friends who know him so well, too. And I get to be part of it all.

I hope that you are happily surprised by the love you feel for those in your life, and get to take a moment to feel the love and happiness they share with you.

Love and blessings to you,
Marie

Good News: CEA is 2.1

2010-08-31T10:13:00.000-07:00

I got the wonderful news that my most recent CEA is 2.1. Below 2.5 is considered normal, so big sigh of relief here.

In the past, my CEA has been a reliable indicator of tumor growth. Each time it went up, there was a tumor growing in my body. Thankfully, the number has been getting smaller each time we test. And while this is a relief, I alternately hold tightly to this good news, even though it is like holding onto sand, or I project myself into the future and worry about whether it will stay low. When I feel like my best self, I do try my best to stay in this moment and enjoy it for what it is.

The past couple of weeks have been fantastic. We enjoyed fabulous weather (even the three days of torrential downpour), a boatload of interesting activities (kids went flying, swimming, sailing and fishing, and I even made JAM for the first time ever), and warm, fun visits with friends both at home and away.

After a wonderful two weeks, it felt strange to walk into the infusion room. No matter how normal I feel, this place makes me revert to being a patient. It helps that I have a tendency to get to know the staff, but, despite the friendly conversation, there are constant reminders that I'm the patient and they are treating me. They are the ones who take my blood pressure and oxygen levels. They have the liberty of commenting on my weight. They lead me to the chair where I will sit for a few hours (sometimes in a private room, sometimes not) and hand a blanket to me. The nurse sticks a needle into the port my chest to draw blood, making sure that my white count, red count, platelets, etc are strong enough for me to have chemo this week. The doctor talks with me to find out about the things going into my body (eating okay?) and coming out (vomiting, constipation or diarrhea this week?).

Even after the nurse leaves my little infusion area, I inadvertently listen to the conversations from the other rooms: How much nausea are you having? Are you taking Emend? Decadron? What are you eating?

When I am outside of Mass General, I feel great. Inside here, I am reminded that not everyone expects me to have good blood pressure and oxygen levels, a healthy and stable weight, and good blood counts. The fact that I haven't thrown up or had digestive problems is considered to be good news. But, it is also a reminder that these things are expected. I tend to try and live up to expectations, so I need to fight that tendency here.

Though I sound like all this is happening "to" me, I admit that I participate in it. For example, I subscribe to a number of health newsletters and news updates specifically related to cancer and colorectal cancer. The emails provide random reminders that I am in that world, too.

The articles in the emails are informative and sometimes relevant. A recent update referred to a study revealing that, in people under 40 years old, rectal cancer has been on the rise since 1985.

I don't fit the description of the typical colorectal cancer patient: older male who eats red meat. As I meet more people who don't fit the mold, I keep developing theories of other risk factors. The scientific side of my brain knows that we ignore data that lies outside our theories, or we treat that data as an exception. I want to scream, "Update your list of risk factors to include these outliers!" But it takes alot of exceptions to get our attention, so few studies are done on those outliers, like me. Or maybe I am simply just looking for an affinity group.

Regardless, I read this report with fascination. I talked with my husband and my doctor about the study, excited that someone noticed a pattern outside the standard assumptions. I felt a certain connection with this group and was happy to feel noticed in this way. Then I realized, I'm not actually under 40!

So here I sit, in my over-40 body that feels great when I keep my mental gymnastics out of the mix, waiting for my chemo cocktail. Thank you for all your prayers and good wishes. I know that each of you has your own particular challenges, either personally or with someone you love, and I really appreciate that you share your positive focus on my treatments as well. It makes more of a difference than I can describe. If you think of it (or even, right now!) send some quick good wishes for a good chemo session and chemo week. And I'm sending those right back at you!

Love,
Marie

Good news from MRI: New spot in liver is not cancerous

2010-08-17T09:02:00.000-07:00

More good news....I had an MRI the other week to check out the new spot on my liver, and everything is fine.

So, we went on vacation. It was awesome. This was a secret to me: Provincetown is incredibly kid- and dog-friendly! So the kids had fun, the dog is finally relaxing a bit (Kenobi is very connected to me and to the kids, but typically shies away from anyone else), and we got to see friends in Ptown, in Truro and on Nantucket. A fantastic break from the norm, and my last chemo session feels like ages ago. I love that!

I remain so grateful for your support, as well as for the stories you share about others who have walked this road in various ways and healed.

A few weeks ago, Julian (newly 4) and I joined some friends at a swimming pool. Julian swam in the shallower end, Young Mr. R (our friends' son, who is 8) swam in the deep end, and I got to visit with my friends. After a bit, Julian got out of the pool, wrapped himself in a towel, and rested on a chair.

Soon, Young Mr. R called from the diving board, so we could see his dive. And a fine dive it was!

Julian is a good swimmer. He has been swimming since he was quite small, and is used to people making a fuss over what a good swimmer he is. So, he generally feels like a big fish and that there isn't alot of swimming left to learn.

But the diving board! It was the first time he's seen a diving board, as well as someone dive off it. A whole new world of swimming opened up to him, and he ran with excitement toward the board to try the same thing.

That is how I feel. I think that I am doing well, but then, I see or learn about someone else doing better, or someone who once was doing chemo and now lives a normal life, or someone who had a medical condition that invaded their lives and now doesn't need the hospital staff....that opens my eyes to new possibilities, higher paths, and the fact that these are even possible.

I am grateful for your stories, not just about health, but in every realm, because they help me (and I'm sure others) learn and grow and expand my world.

And again, thank you for your good wishes for chemo this week!

Love,
Marie

CEA results are in, and the news is good!

2010-08-03T09:38:00.000-07:00

I am writing this from the infusion room, hooked to chemo, so pardon any fuzziness....

I got some great news -- My CEA level is 3.2! Or, maybe it is 3.1. I don't remember exactly, but I do remember that it is below 3.5, which was my previous low number. I saw that about two years ago, and haven't seen it since. So, this is truly cause for joy!

Of course, I can't just revel in the good news; I have to find the angst somewhere. And right now, it lies in two places:

First of all, 2.5 and below are considered to be normal. While the rest of my bloods are great compared to the average person walking down the street, I know that I need to get this tumor marker as low as possible.

Second, and even bigger: As I begin to enter any scary phase of my life, I am more reliant on my faith and acknowledge my dependence on God and elements greater than myself In fact, I usually just hand the whole thing over, saying, "I know I've made a total mess of this. Can you fix it? I promise I'll do ANYTHING!"

When my life starts to feel more "under control," I tend to think it is under MY control, and then become more lax in my faith and practices. That shift bothers me. This falls into the same bucket as, when something heartbreaking happens to me, I have huge compassion for everyone, but when things are going well for me, I am a bit more judgmental of others.

Lately, I work to stay aware of this, and try various approaches to live more consistently with faith and compassion. Given that I know how hard it is to maintain these, I am especially thankful for yours on my behalf, and very impressed that you keep it going. I know that my quality of life and relatively good health stems from that.

Also, so many of you, of us, of those we love, have been through and are going through all kinds of heartbreak, pain, diagnoses, treatments. Please know that I pray for you, and if there is something specific I should focus on, let me know. Truly.

Last week, the homily at church really touched me, and I'll share one aspect with you. "Jesus came to form a community of faith, not individuals of faith."

Regardless of your religious beliefs, I sincerely appreciate your being part of my community. It is powerful. Thank you.

Love, Marie

Even in Routines, Changes Abound

2010-07-20T07:39:00.000-07:00

Thank you for hanging in there with me. This road is starting to feel long, though I'm not complaining about that! Just realizing that, if it feels long to me, I suspect that it may feel long to you as well. Please know that I deeply appreciate your being along for the ride, keeping me and my family in your prayers, and doing so much for us.

Friends have asked about the status of the HIPAC (hot chemo) surgery that I was considering. This is a huge surgery, and since things are going relatively well, it is hard for me to jump into it. But, it is still on the table. I need to get a liver MRI first (to check out the spot on my liver, though the PET CT seems to show it is okay). So the HIPAC is on hold for now, and I don't need to make an immediate decision about it.

My two-week cycles are starting to feel routine, but there are definitely changes. One big change (on the chemo front) is that my usual nurse had a baby, so I got a new nurse. Though I knew that this was coming, I still burst into tears...then moved ahead.

The big, positive change is that I had absolutely no stomach pain this past cycle. Yay! I know that more than a few of you were helping to pray for that. THANK YOU! It was like I got an extra day of life.

We had alot of changes in our household, too. Aidan turned seven, and Julian turned four (on the same day -- I like to say "Thank Heaven for 7-11"). I was initially diagnosed with this when Aidan just turned four and Julian one, and I sometimes wondered if I would see Julian turn four. That alone was worth celebrating.

The day before the boys' birthday, we made a trek to Cambridge, VT to pick up our dog! I'm not a dog person or even an animal person. And I like things to be clean. No one could be more surprised than I was about my sudden deep desire for a dog.

After my diagnosis in February, I felt the boys should have a pet. A cat was out of the question (due to allergies) and I immediately ruled out a dog because it would have to live inside. We considered rabbits, since they could live on the screened porch and outside, then decided it wasn't a good fit. We tried to get chickens, but the coyotes got to them before they reached our house. Then I met a friend's dog, and suddenly my view and emotions changed, and I got a laser focus on that.

Kenobi (named after Obi Wan from Star Wars) is a 7-month-old cockapoo. He arrived housetrained, relatively calm (though scared out of his wits), and willing to do what I ask him to do. That alone is a refreshing change for me. Plus, he seems to be smart, which I appreciate, and adores me, so who can resist that? The boys are thrilled with him. Tiron is graciously adapting.

Another big change is my mother's cooking. My parents have been generously traveling from Pittsburgh, PA to Cambridge, MA for one week every month, which basically amounts to every other chemo session. They are gifted at keeping the house running, and my very Italian mother is a fantastic Italian cook. Growing up, we always ate all Italian. I didn't see a bagel or Chinese food until college.

But she jumped into preparing raw foods, and now routinely spouts beans, makes raw hummus, and uses the dehydrator to craft incredible crackers. She starts with my recipes, then enhances them to make these amazing creations that I can't replicate. She even juices wheatgrass and greens. I admit that I am impressed. She still makes meatballs, sausage and ribs for everyone else. The meat dishes aren't tempting to me, the spaghetti is, and I like that the combination makes our house smell like my memories of growing up.

I hope that your summer is going well, with lots of beautiful moments, big and small, and that you are riding the waves of change as they happen. I also hope that you can feel the adoration that surrounds you, starting with adoration from me.

I have chemo again this Tuesday (July 20), and really do appreciate any prayers, positive actions, even smiles on our behalf.

Love,
Marie

An Encounter in the Waiting Room

2010-07-19T19:46:00.001-07:00

I continue on the raw food diet. I'm not perfect at it, but I do stick to it most of the time. I try not to be obnoxious about it, though I may have crossed a line last week.

I sat in the waiting room near a family of four. The father was in his late 50's or early 60's. He was joking about waiting so long to see the doctor that they probably had pajamas waiting for him. I looked up and laughed.

From there, the parents and I started chatting about the things most chemo patients share. He looked good to me, but shared that he lost 40 pounds so far. His wife told me that she was 59; I could feel her positive energy, as well as her disbelief that they were even here. His daughter and son, in their late teens or early 20's, sat next in the line of chairs, each occupied by a book or their iPhones while they listened to our conversation.

We chatted about the length of the appointments, the fact that chemo wasn't working for him, how we both hate the IV fluids they give for dehydration. She was more factual, though cheery. He tried to make light of it all.

At one point, the snack cart came around, filled with items that I used to think were totally yummy: roasted peanuts, Lorna Doones, potato chips, apple juice, V-8...I declined. The family members each took a few treats. They advised me, in a friendly way, that I should take what I liked and save it for later.

"Like we just said, you don't know how long you'll need to wait here."

In response, I blurted out, "I'm not doing sugar right now."

They all stopped; even the kids looked directly at me. They all had hope in their eyes that broke my heart. I recognized that feeling; I do it myself, looking for a "cure" that might be out there, something I don't yet know or haven't heard about, a lifeline.

After what felt like a long silence but was probably only a moment, the wife softly asked, "Did the doctor advise that?"

I wanted to reassure them. Even more than that, I wanted that look in their eyes to go away. Plus, what do I really know. I am trying everything I can do that feels right to me, but maybe it isn't right for everyone.

"No, this is something I'm doing on my own." It is true, but even as I said it, I wondered, should I share more information? Is this something that could help him?

Then the father joked, "Sugar will make you even sweeter."

Again, something I recognized. The patient telling a joke to make everyone else feel better.

It broke the mood and we chatted lightly again until we were all called back into our doctors' offices.

As I was leaving my appointment, I caught a glimpse of them in their doctor's room. Their mood was no longer light, there were no smiles, and I said a silent prayer for them as I walked away.

Chemo status quo; Friendships and Memories

2010-07-06T07:21:00.000-07:00

This has been a really great two weeks. My last chemo (two weeks ago) went, well, as chemo goes. Overall pretty smoothly.

My hair has thinned so my head gets cold, One of the women who works there is Muslim, and she taught me how to tie a headscarf. And when I went to MGH for my injection on Friday (I get an injection to help increase my white cell count), the nurse did an amazing Reiki healing. So the staff continues to be really supportive.

I got those awful stomach cramps again this week, but I was able to manage them with meditation. It was pretty amazing. I isolated myself from everyone else and concentrated only on my breathing. At one point, I found that I could separate myself from the pain, and, in that calm, I started to notice things. For example, I started to notice the feelings that would happen immediately after the pain would subside, which I never noticed before. And I noticed that the pain moved, slowly, along the path of my intestines. Yes, I was still out of commission for a few hours, but it was way more manageable than It had been in the past. I would love to be able to replicate this with any other pain -- it was pretty cool.

Other that that, it's been an amazing two weeks. Lots of celebrations and visits with dear friends. I feel so lucky to be able to do that, and to share these experiences together.

Because of that, I started to think about our lifetime of experiences with so many different people, and the subsequent stories we all have about each other. At the risk of letting you know how goofy I was at the age of 12, I share this email from a sixth-grade classmate. He and I haven't been in touch in YEARS, and I haven't thought about this event, oh, probably since it happened, but it was a memory that came right back to him:

-----
We're on a holiday road trip, and I heard a song on the radio that brought back a memory... Remember the song "Billy Don't be a Hero"? Well, I recall that in sixth grade we had to pick a song and make drawings that told the story of the song, then stand in front of the class and flash our drawings cue-card style while the song played. You...chose "Billy Don't be a Hero" and every time the word "Hero" came up, you had a drawing of a sub sandwich, very well drawn with a colored pencil. I don't even remember what song I chose...
-----

If someone asked about sixth grade, I don't think I would have recalled either the assignment or the song on my own. But, through this shared experience, he obviously holds a story of my life and a piece that is truly me from that time. I was really touched by this and suddenly started to notice it everywhere.

I was honored to witness this at a party this weekend, where the host couple had friends from all stages of their lives. I got to watch my three-year-old son at parties with his friends from school, where their comfortable and fluid interactions show how deeply they already know each other. And I marveled as my friend from third grade, who recently returned home after a one-month visit (along with her husband and two daughters - how amazing is that!), randomly recalled shared experiences that are like gold.

I'm grateful for all these friendships and the memories those friends hold, events that I either don't recall or that reside in the dark, dusty corners of my mind and heart. Those are places I don't typically explore without a professional. It's way more fun with a friend.

Thank you for all the memories you hold, even as you might recall one right now! And I hope that, soon or during this summer, you can spontaneously go to some dark dusty spot in your heart with a friend, find a treasure and smile, and barrel ahead to create new memories!

Thank you for all the prayers and good wishes, and keep them coming!

Love to you,
Marie

Life is Good

2010-06-21T20:11:00.000-07:00

Sometimes things can be so good that it is scary. I feel like I am at this juncture where all your prayers and support are pulling things together, and I can't even describe how appreciative and awestruck I am. I feel like the power of this group can move mountains, and I am so honored that you are moving this particular mountain. You are recalibrating my sense of what is possible. What a gift.

The big good news is that my CEA level (blood tumor marker) is down to 4.5. Normal is 2.5 and below. I am thrilled that this is moving in a healthy direction!

I'm not sure what specific thing is doing the trick. There is the chemo combined with all the prayers on my behalf, Chinese tea, raw vegan diet, juicing, wheatgrass juice, yoga, mind/body work, acupuncture....exercise should be in there, too, but I'm lacking in that area. In any case, I will keep doing all of that, and hope that you don't mind continuing to do whatever you are doing, whatever you can do. Thank you.

Your support leading up to my PET CT was immensely helpful. I think that was more stressful than I realized, and it made me feel really fragile at that time.

After my PET CT, the plan was to talk with the doctor in D.C. about being a candidate for HIPAC surgery. We still want to talk with him, but since things are going in a good direction, it is hard to sign up for such a huge surgery. I'm glad that it feels a bit less urgent.

This past chemo week was like the others, including the intense stomach pain. Thankfully, it passed, and I didn't need to go to the hospital. The pattern is familiar by now; even the conversations / arguments that Tiron and I have about my condition at different points of the week are becoming predictable. And then the good days help me to forget all that.

This weekend, we went to the amazing James Taylor Carole King concert. I arrived loving James Taylor, and I left wanting to BE Carole King. She is so strong, energetic, inspiring, talented and clearly a focused worker. She was smiling, upbeat and involved in the entire concert. If she wasn't playing piano, she was singing with the backup singers or dancing around the stage. For me, she made the show come alive, and helped me to see how being fully present and involved can strongly influence the experience of others.

And her hair -- thick and curly. I want that, too!

Just as I underestimated Carole King's sheer vibrant presence, I'm often wrong about people. I once tuned into Oprah to watch Randy Pausch (of The Last Lecture fame) but Kris Carr was the first guest. I thought, "who on earth is SHE anyway?" but I listened. She sparked my interest in juicing greens and in Hippocrates Health Institute. Since then, I've attended her workshop as well as Hippocrates and now believe that Kris totally rocks.

I'm constantly reminded that there is more to someone than meets the eye. I'm also learning that is true for other things, too...like cheating just a bit on a food regimen.

I've been eating raw foods and juicing greens and wheatgrass pretty religiously for the past couple of months. About two weeks ago, I felt confident that my body had a huge stockpile of greens and I could eat one small piece of cheese. It tasted good. It felt creamy. It really hit the spot. How about just another small piece? And so I started down the slippery slope. Over a few days, I finished all the cheese in the house. Thank goodness. And, who would notice anyway?

Then I went to my acupuncturist. At the start of the session, she pressed on different points on my legs. When she pressed on a point next to my knee, it felt sore. Our converstaion went something like this:

Me: Wow, that's sore. Feels like a black and blue mark.
Marisa: Here? (she pressed again)
Me: Right there. Yes. Weird. It didn't hurt until you pressed on it.
Marisa: That point processes dampness. Like, dairy. Dairy is a damp food. But you are on a raw food diet.

Busted.

So, I'm recommitted to my diet. No one else might notice the missing cheese, but that little thing must make a difference in my body.

Talking with some girlfriends, one of whom is a nutritionist, we noted that all the diets that are considered to be healthy also come from tightly knit communities, where the focus is not the individual, but the community. So maybe it isn't the diet. Maybe it is the power of being part of a community.

I am grateful for the power of this community for me and my family.

This week, I completed my participation in a prayer survey as part of a research project at the hospital. The questions in the final survey made me look anew at the support I get from you. Each time I answered a question like, "how often do you feel alone," or "is there anyone you can turn to when you are sad," I renewed my gratitude that you are in my life, in whatever way you can be in the moment. No matter what part of the world you are in, I feel a connection. That gives me energy, and makes me smile.

So while the lyrics from "You've Got a Friend" might be applicable here, these Carole King lyrics (from Beautiful) speak more loudly to me right now:

You've got to get up every morning with a smile on your face
And show the world all the love in your heart....
You're gonna find, yes you will
That you're beautiful as you feel

I hope you are feeling particularly beautiful today.

Much love,
Marie

P.S. Chemo tomorrow. Thank you for any prayers and good thoughts, both for a good chemo week as well as good results!

Good news from PET CT

2010-06-09T09:00:00.000-07:00

Writing this before I get hooked up for chemo....

Thank you so much for your good thoughts and prayers! I JUST got the results of my PET CT and they are good -- yay!

What exactly does that mean?
Well, we know there was tumor left behind in the surgery, but if it is still there, it isn't big enough to show on PET CT. That is a big relief.
There is a new spot on my liver, but it doesn't appear to have the same characteristics that my tumors typically have, so they recommend a follow-up MRI but aren't too worried about it. Again, whew. Okay, not total relaxation, but could be worse, so I'll take it.

My type of cancer also shows up in the CEA levels in my blood, so I get that tested every month. Last time, it was 6.4. Normal is below 2.5. So, there is still stuff in there, but at least it is smaller than it was. I asked them to test it again today. I won't get the results of that until either next week or next chemo. They don't like to give these results over the phone, but many of the folks here will tell me, kindly knowing it is more anxiety-producing for me to wait.

All good things.

Thank you for keeping me company on this journey, and for being there to share this news.

Lots of love,
Marie

PET CT this week

2010-06-07T23:00:00.000-07:00

First, I want to ask for prayers for my friend and former colleague, Don Arnoudse. He is having surgery for prostate cancer tomorrow morning, June 8.
To be specific, please pray for peace, calm and grace as he heads into the surgery, for the surgery to successfully remove ALL the cancer, for a full recovery after the surgery, and for a clear "call" from the divine for the best full use of him to be in service to others after his recovery.

I know that he would really appreciate your good thoughts and prayers on his behalf.

------------------
As for me, I'm doing really well. I really appreciate your e-mail messages and I am quite behind in answering them. But your words stay with me; I think about them and re-read the messages. I just have trouble typing right after chemo, and then it takes awhile for me to catch up.

Chemo week wasn't fun, of course, but it was okay. I had one day where I didn't get out of bed, but that was more due to laziness than pain. Lying in bed with my chemo bag dangling from my chest, I kept weighing the things that I would need to do before I could even get to anything interesting:
-- Clean up all the hair I lost the night before,
-- Drag the bag (I know, I carry it, but it feels like a ball and chain) with me to the bathroom,
-- Change my ostomy bag,
-- Tape plastic wrap on my chest to keep shower water away from the connection between the chemo tube and my body
-- Shower, then clean the hair out of the drain
-- Comb my hair, and get bummed out by all the hair on the comb.
-- Figure out what to wear that accommodates the whole shebang

Just thinking about it made me tired, so why get up.
Of course, by 4:00, I was grossing myself out, so I hauled my reluctant body out of bed and did the whole routine. When I was finally ready to go for the day, it was dinner time! Next time, I'll just get up.

I had that debilitating stomach pain again, but it was only one day. Yay!

All is well now, and it actually takes effort for me to remember all those events, because they feel like they are in my distant past. Overall, it's been a wonderful week filled with friends and fun events. I even got to go to a Harvard reunion -- I didn't go to Harvard, so who'da thunk I'd ever be there...what a thrill!

At the same time, I'm a little apprehensive about the week ahead. My chemo schedule for this week will shift by a day. On Tuesday, I have a PET CT. It is a normal check point in my chemo path, where they use machines (and radiation) to look inside my body for any "hot spots" that might be tumors. My blood numbers look good, so I am both optimistic and bracing myself. Fortunately, I'll get the results on Wednesday.

Following my meeting with the doctor on Wednesday, I'll have chemo. This is instead of my normal Tuesday chemo. Then I will wear the chemo bag from Wed - Friday, and get an injection on Saturday. I like to think that I handle change well, but the prospect of having different nurses on a different chemo day is almost more anxiety-provoking than having the PET CT. All that said, I am relatively calm.

Of course, life isn't all chemo. Last week was Julian's last week in his preschool Yellow Room, and I was lucky to get to go to the events. This week is Aidan's last week of first grade, with lots of activities planned. I will miss the parent breakfast, but I figure it will be okay.

How the kids deal with this has been top of mind lately. Often, I simply push it to the back of my mind and focus on the day-to-day; the logistics and emotions can be overwhelming, and I just want us to be a normal family. This week, though, I felt like "death of a parent" was everywhere I looked, in newspaper articles, radio shows, blogs, and even news from a friend who knew a mother who died last week, leaving her school-aged children. So I've had to face it more directly, though it is a little comforting to know that we are not alone.

I haven't yet found alot of information on how to best help children through a situation like this. Adults have a difficult time navigating a parent's illness and potential death. What about children, who do not have the life experience, longer-term relationship or perspective of adults? My current mission is to learn more about how to help our children through this period, regardless of where this path leads.

I think about this in two ways: how to help them with their feelings right now, and how to help cushion the blow for them if something should happen to me.

As for dealing with their feelings right now, Tiron and I stumble through that day by day. Sometimes things are normal, sometimes we wonder if things are normal (we all have our "weird" moments, just in regular life), and sometimes, things are pretty heavy and we muddle through.

In case something should happen to me, I wonder how to best build a net that might catch them and cushion the blow. As hard as it is for me to think about this, I realize that it would be even harder for them if I don't. Plus, I don't know what kinds of nets they might need. For example, would they be interested in the stories that a mother might tell them when they were older, like what they were like as babies and the strengths we saw in them at an early age? Would they be interested in factual information about me? Stories about our times together? If you have any insights into this, please send them along.

Right now, I look around for clues. Though Tiron would be there for them, and I think he would do a great job, I do wonder what holes would exist and how those might be filled.

For example, almost every Friday, I attend an assembly at Aidan's school with the pre-K through fourth grader students, and other parents. The fourth graders take their turn reciting a poem in front of the assembly, a milestone in their time at the school. I love this part of assembly. I listen to each of the kids, thinking about why they chose the poem they did, how they practiced for this moment, what their speaking style is. I love seeing the families as they cheer for their children. And I wonder, if I am not here, who will listen especially to my boys, to help prepare them and to cheer them on?

A couple of months ago, a friend came with me to assembly. I sit with the parents, not with Aidan, but she grabbed a chair and he sat on her lap. He was incredibly comfortable with her, and she was completely present with him. Watching them together made me relax a bit and realize that she would be there for them, and that maybe, in some way, things will be just fine.

And I started to think -- whether or not I am here, hopefully our children will learn more about me through stories from Tiron and our friends and family who know me in different ways. This gives me a new perspective on the time we spend together with friends, how we get to know each other through the smallest of interactions, and how we become part of each other as time passes. Why we choose the jobs we did, whether we choose to exercise or chow down (or both), to read a book or have a party, how we talk about the major and minor events that are important to us, the decisions we make about how to spend our time -- we learn so much about each other in so many subtle ways. We become interconnected through these conversations and interactions, and we hold the ongoing stories of each other's lives.

Deep inside, I feel like that is what will carry them both through. The social web we create will hold them, always. And maybe that is the strongest net of all, for me as well, no matter where this path leads.

Thank you for helping us all through this time, for being the net that catches us. Thank you for always stepping in, even when we don't know what to ask for. Thank you for being so steady for us in an unsteady time, for giving of yourself so unselfishly, and for keeping your humor along the way.

Prayers to you for a great week, and thank you for your prayers for me!

Love, Marie

Some ups, some downs, and the power of words

2010-05-24T21:24:00.000-07:00

Chemo tomorrow (Tuesday). The ball gets rolling at 7 am.

It's been a great two weeks in so many ways: parties to celebrate graduations, reunions, life (literally went to a Celebration of Life party), and the fact that we can dance with our 3 year old. We had a quick but fantastic trip to NYC with the boys, visits with friends....I feel so lucky to be well enough to enjoy all that.

My last chemo went smoothly. Typically, I have chemo on Tuesday, wear my continuous infusion pump on Wed and have it removed on Thursday. Also on Wed and Thursday, I take anti-nausea medications. But on Thursday, I felt so well that I forgot to take them. Woo hoo!

Never fear, though -- life is not without its checks and balances, and I got sick the next week (my non-chemo week), with the same thing that sent me to the ER two weeks prior. Late Monday night, I could feel it coming on, and the stomach pains kept me from moving around. I stayed up all night, trying to keep everything down. I hate getting sick, and I'm a wimp with pain. I also knew that, if my husband caught wind of this, he would insist that I go to the ER, and I preferred to stay home.

At 5:30 a.m., the gig was up. And, my husband heard me.

He was out of bed like a shot, showered and dressed before I was done. He appeared like Superman on the scene, standing over me with his hands on his hips. Since I was alternating between praying to the porcelain gods and being doubled over on the nice, cool, clean bathroom floor, I really wasn't in the best position to argue. Of course, that didn't stop me.

"They will just do tests and observe. It is way easier to be sick at home. I'm not going. And you can observe me here."

"I AM observing you. You need to go to the ER."

I could not imagine laying on the bathroom floor of the ER. I had to stay home. I was convinced that this would run its course. At the same time, the voices from the ER docs, two weeks ago, echoed in my head. "You could have a bowel perforation and die."

I made my choice to stay home, but these words running through my head scared the crap out of me. (Pardon the rectal cancer joke.)

Thankfully, my discomfort ran its course, I avoided the ER, and got to recuperate at home. I felt more relieved than right. And more than a little lucky.

The rest of the week provided lots of opportunities to reflect on the power of words. Mostly, I live in a small circle. When I leave my house, I primarily interact with friends, or friendly people who are affiliated with my sons' schools, or neighbors. When I venture into Harvard Square, I encounter the earthy-crunchy people of Cambridge, who typically like to live and let live. It's all peace, love and rock and roll, most of the time. I admit that I prefer to surround myself with people who I generally like, and, while I think I am open to anyone, I have few random encounters with people much different than my social circle.

Feeling strong one blue-sky day, I went grocery shopping for the first time since January. My parents had a small grocery store when I was growing up and we all worked there. I LOVE shopping for food, and I chose a grocery store outside Cambridge. Walking among all the fresh fruits and vegetables, checking out the olives and cheeses, and smelling the prepared dishes was a completely sensual experience for me.

I was already overjoyed, and it got better: Leaving the store, I ran into two separate friends in the parking lot. So fun!

Then, for about a second, I blocked a woman driving her car. She was clearly angry about it, and I really didn't mean to annoy her, so I apologized. In reply, she screamed, "Would you shut up?" Wow. Suddenly, I marveled that this wonderful shopping and social experience, even the sunny blue sky, could be totally wrecked by one person's strong words. While it still stung, it was, luckily, so out of proportion to the situation that it was hard to take it too personally.

I thought about this for a long time over the next few days and looked at it from lots of angles. Harsh words and feelings transfer strong negative energy, and good words and feelings transfer positive energy. But why do the bad ones have such staying power? Why can they crush the good feelings? I don't know. Maybe the good ones are more fragile, or maybe, when those good feelings come our way, we have a responsibility to protect them and keep them alive and going.

Once I returned my focus to the many good parts of that day, her words started to lose their sting.

On top of the words, I realized that I carry around alot of assumptions I didn't even know I had, like...
...if I am nice, people will be nice to me.
...if I take care of my body, I won't get sick.
...tomorrow will mostly be the same as today.

Well, apparently, I'm not really entering into valid agreements with the universe!

But I'm happy to enter into agreements with you. I admit, you are part of my circle of choice, so it isn't a huge risk. But here is one: I promise to take care and nurture all those good feelings and prayers you send my way, so that any little good thought, prayer or wish has the potential to grow, and I will send those feelings right back to you. They truly carry me along, and I appreciate any you send for good chemo this week!

One short, completely unrelated story:

This morning, the boys asked if they could catch a rabbit in our backyard. I figured that was harmless and said yes. To my astonishment, they returned about five minutes later with joyful expressions and a baby rabbit.

When I asked why they took the baby rabbit, my six-year-old replied, "Because I can't catch the bigger ones."

I love that he knew his limitations and was undaunted by them, figuring out a way to go after what he wanted. I love seeing the happy eyes of both boys, filled with the hope that they would get to keep the rabbit. (They did not - we returned it to its mama.) And I love that both boys worked together to do this, even though it completely freaked me out to see that baby rabbit in my house.

I hope you find a way to catch whatever makes you happy, and that you get to keep it, too.

Love, Marie

P.S. I need to mention that a friend, Andrew, passed away last week from colon cancer. Three of us were diagnosed with colorectal cancer around the same time, though we've each had our own journey. He was younger than I am, and has three small children, around the same ages as mine. It is sobering to think of the ripple effects of this disease.

Not great week morphs into something better

2010-05-10T19:59:00.000-07:00

The good news is that I made it to see Aidan's play! It was so fun to watch all the kids, and Aidan did a great job. Thank you for your support there.

All is well now, but, last week was really pretty uncomfortable. I had my normal "not so fun" post-chemo days, but I was at least up and around.

I usually count on having a "chemo week," which I accept as unpredictable, followed by a "normal" week where I can recharge. But the bad days were stretching into my "normal" week -- no fair! I had severe abdominal pain and was truly unable to move for hours and then days on end, culminating with going to the ER mid-week. I really admire people who can withstand pain. I like to think I have a high threshold for pain, but at some point, physical pain really brings me to my knees.

The ER folks were fantastic. The IV nurse actually noticed that I might need rest more than an IV at that moment and left me alone. I got an x-ray -- no problems, and how handy to have Tiron (my radiologist husband) in the room to read it immediately. I started to feel better and better -- it must have started to clear itself up at that point. I decided to refuse the blood tests and the CT scan because they didn't seem to be necessary. And though the doctors wanted to keep me overnight for observation, they did let me go home instead. Yay!

I realized that I was less than optimistic after hearing all the worst-case scenarios described to me in the ER (like, if you leave and your bowel is perforated, you could die). I loved that my PCP called me the next morning and said, "This could very likely be a one-time occurrence, and it's over." That kind of positive energy is so contagious, and very much needed. I went from dragging my feet to walking on a cloud.

Though I wasn't depressed anymore, I still felt a bit sorry for myself about my bad week. Then, I got into the car, and the soundtrack for Jesus Christ Superstar came on. As the story unfolded (of the seven days before the Crucifixion), I thought, Okay, THAT is a bad week.

So, not to be a downer, but speaking of bad weeks, I'm realizing at this point, I know so many people who are living with cancer. They go in for their treatments, they do what they need to do every day, they worry about the future, they live in the present. In the grocery store or walking down the street, a casual observer would not realize they are struggling in ways different than anyone else. I always pictured cancer patients to be skinny, bald, on oxygen, or in wheelchairs. But that isn't always true, fortunately. They pretty much look like everyone else. And it makes me wonder what everyone is struggling with -- that woman I pass on the street who seems to have it all together, the man who waits a little too long when the traffic light turns green. But it doesn't make sense to focus too much on it, because they aren't focused on it at that moment either. There is so much more to life.

Not only are they living, they are living in ways that their doctors would never have predicted and maybe have never seen before. For several of them (and I hope, all of them), their cancers are shrinking and disappearing. And that gives me hope, too.

I want to share two disconnected stories with you. One night, we had dinner with a couple of musicians, one of whom pointed out that our very loud little boys have resonance. I didn't know what that was, so he described it roughly like this: Their bone structure amplifies the sounds they make, making their voices ideal for projecting in singing and theater. What a fun way to look at something that I previously felt was just, well, loud! I also realized that it would be an uphill battle to focus on quieting them down (even though I still try!) and maybe I should spend more energy helping to channel this rather than fight it.

The other is....I have been trying to say "yes" more often to the kids. Sometimes, I say yes when I should have said no and screw up royally. But, the other night, when my three-year-old asked for a popsicle before dinner and I said, "Yes," he enthusiastically responded, "I LOVE yes!"

I hope you get lots of yeses to things that bring you joy today and always. Tomorrow (Tuesday) is chemo, so do send your healing prayers if you can for good energy and for any cancer cells to disappear, for me and for all those living with problems that may be out of their control.

Love, Marie

Blood counts dramatically improve after 1 week at Hippocrates!

2010-04-27T14:48:00.000-07:00

This week, I'm writing while I am getting chemo. I always feel a little drugged, due more to the anti-nausea meds. I guess that is not surprising, but this message may not sound completely like me.

Thank you for reading the piece on the CommonHealth blog. Your on-blog comments were really helpful for Rachel and Annie, and all your notes (both on and off the blog) were so wonderful and uplifting to me, which was such a nice bonus. Even if you didn’t comment, thank you for getting the good energy out there!

Even bigger (to me), I want and need to thank you for your prayers for a good chemo week. I must be starting to sound like a holy roller (no offense to any holy rollers) but honestly, I cannot believe the difference your prayers make in my little life. If it is possible to have a good chemo week, I had one last time around. I felt fine during chemo, and still felt okay leaving the infusion room, I had minimal nausea all week, and was even able to fly to Florida on Saturday. So if you think of it, say a little prayer right now for this to be a good chemo week, too! Aidan is in a play this week, and I would really love to go and see it and feel good enough to focus on him.

I was lucky enough to spend last week at the Hippocrates Health Institute in West Palm Beach. Tiron and the boys flew down with me, and had their own beach vacation while I was there.

Hippocrates focuses on providing information and services so that you can heal yourself. My personal focus was on learning more about the raw food diet, juicing, and food combining. I learned that this place is like a mecca for people from all over the world who want to heal. It felt almost biblical, with people from all walks of life arriving with all sorts of health challenges. A few were there to simply detox or to kick-start a healthier lifestyle. But so many were there to learn what they needed to heal themselves.

In some cases, there was an obvious sign: someone in a wheelchair or using a walker, or blind, or bald in that way that only chemo can do. But most folks were indistinguishable from the general population. It made me wonder, again, how many people I impatiently run into who look "normal" but are dealing with pain or disease, and who are doing the best they can.

The grounds are about 35 acres of greenery, with benches and hammocks, statues, etc. placed here and there, lots of waterfalls, really beautiful and relaxing. No traffic noise at all. Everyone, from the directors to the housekeepers, has such a positive attitude without feeling like cheerleaders. They all speak in terms of “health challenges” rather than your diagnosis or prognosis, and everyone, without exception, operates from the assumption that you can and will heal. That kind of energy is uplifting to your soul.

I'll admit that the menu was a bit challenging. The focus is 100% raw foods. Not only does that mean “salad bar” for lunch and dinner, it is THE SAME salad bar: leafy greens, more sprouts than I’ve even seen in my life, cucumbers, onions, sun-dried olives, crispy dulse (sea vegetable). There were one or two new side dishes (again, raw) at each meal. AND, breakfast is cucumber juice. I don’t each much but I initially assumed I would starve. And, indeed, for the first few days, I carried a bag of nuts and crackers with me, and munched on those between meals.

After about three days, I started to feel incredible. I had lots of energy, and even stopped snacking between meals. The side dishes were becoming more and more interesting (raw pasta made from zucchini, marinated mushrooms) or maybe I was just so deprived that they looked good! In any case, the diet became fun, and the chef did a cooking course, too, If you can call it cooking?

There were lectures on topics like growing your own sprouts or how to handle questions at Thanksgiving when everyone else is eating turkey.

Though the workout room held equipment for all abilities, open 24 hours every day, and I had lots of free time, I STILL couldn't find the time to work out. Hmmm. Maybe it isn't my schedule. Maybe it is just me.

They also had four small swimming pools: a regular pool (no chlorine), a warm salt-water pool, a Jacuzzi (or maybe it was a hot tub) and a really cold pool. Oh, and an infrared sauna. Plus the usual spa treatments and a few “unique” spa treatments.

I would be remiss if I didn’t mention that, at Hippocrates, they focus both on what goes into your body and what goes OUT of your body. The all-inclusive package includes a colonic, where they clean your colon. And they recommend that you do enemas to stay clean. Followed by a wheatgrass implant. (Sorry if I spoiled your taste for wheatgrass.)

I traded my “included colonic” for an extra massage in a yurt, which was amazing.

All this said, who knows what works. But, happy news -- when I got the results of my blood tests, my white count is higher than it's ever been, and spectacular by any measure! My other bloods are also great (well, liver function isn't perfect, but it is within the "expected" range). They told me to keep doing whatever I am doing. Yay!

After all I learned last week, I continue to feel like any cure for me will come from something higher than myself, and I feel like, as a group, we can tap into that power and move that energy in a positive way. Thank you, from the bottom of my heart, for all you are doing to channel that energy into my healing and my quality of life.

Much love and light to you in your life today!

Love, Marie

Article and audio on WBUR health blog

2010-04-13T12:24:00.000-07:00

I just learned this and had to share it!

My friend, Rachel Zimmerman, is a journalist and runs the WBUR Health Blog. She asked me to write something about my experience going through chemotherapy.

If you are interested, here is a link to the article and an accompanying audio, which was done by our friend, Annie Brewster. Annie is a physician at MGH and doing studies of people going through various challenging life situations.

Please leave comments about either; they are really helpful. If you are shy, I don't think you need to use your real name.

http://commonhealth.wbur.org/guest-contributors/2010/04/a-mother-savors-life-while-battling-cancer/

I haven't yet figured out how to do the automatic link on this page, so you'll need to cut and paste to see it.

I hope you are having a wonderful day!

Love, Marie

P.S. I'm writing from the chemo infusion room. A friend, who came to visit today and had chemo a few years ago, commented that this is a nice place, so I see it through some new eyes now. Still, everything is relative. I'm thankful for the awesome view of Boston I got today. (Not to complain, but Bali would be nicer.)

Cardio week, St. Teresa, and life is good

2010-04-12T22:22:00.000-07:00

I decided that sending an update before chemo, rather than afterwards, is more uplifting. Chemo is tomorrow, so here I am tonight.

Last time around (2 years ago), I was able to view chemo as an adventure. This time, it feels like old news, been there, done that, etc. As funny as chemo can be, it is way more fun to focus on other stuff.

However, hospital stuff seems to make up a portion of my life. Even on a non-chemo week, I was at the hospital on Monday, Wednesday and Friday. If I didn't spend so much time at the hospital, I might actually be able to exercise and be healthier.

I'll back up a bit. On my chemo day, my oncologist normally asks how I did with the last treatment so that she can adjust the prescription for that day. I ran through my side effects, all were as expected, and then excitedly told her: My chest pains totally disappeared after I started drinking Chinese tea.

As often as we've talked about my chest pains in the past, it never went beyond, "uh huh" until today. She stopped and said something like, "Let's skip the chemo pump this week. Sometimes that can cause a heart issue. I'll make an appointment with a cardiologist."

I was OVERJOYED to skip the pump, and amused that Western medicine will not be outdone by Traditional Chinese Medicine.

Still, nothing is free. And I feel a little like the hungry caterpillar in Eric Carle's children's book:
On Monday, I saw the breast cancer doctor (I'm almost five years out of that one -- keeping my fingers crossed!).
On Wednesday, I saw the cardiologist. Great guy. From Nashville (gotta love that) and supported the Chinese teas.
On Friday, I had an echo stress test on a bike (no IV needed. whew). The techs kept making me laugh, which really does lower your heart rate. I thought that was just one of those nice things people tell you to cheer you up. Meanwhile, the bike pedaling automatically gets harder and harder, trying to raise your heart rate to its max. It was an interesting competition, and I passed with flying colors. Yay! Love good news.

It truly felt like cardio week last week, though, as three other friends saw their cardiologist as well, all for different reasons. Thankfully, we are all up and walking around. That counts for alot.

The other "medical" event this week was wig shopping. I get varying answers from the docs on whether I will need this, but my hair is definitely thinning. Thankfully, I had alot to start with! Though it is easier to shop for wigs when you have hair rather than afterwards, I kept putting it off. A friend took the reins, researched my options for places, made the appointment, went with me, and made it all no big deal. THAT was cool, watching her take on a dragon in my life and extinguishing its fire.

Back to chemo day: It was time to add another chemo drug to the mix. I got to choose. One has "no noticeable side effects," whatever that means. The other causes "often disfiguring skin rashes." Hmmm. Which would you choose?

The other theme this week (besides cardio) was St. Teresa. St. Theresa of the Little Flower is a constant prayer for me lately; the writings of St. Teresa of Avila were a surprise focus of the Kripalu workshop I attended this weekend; our friend, Teresa, brought a chicken pot pie (okay, she isn't a saint but we felt pretty blessed by that) and another Teresa I've never even met gave me a beautiful prayer shawl. At this point, I feel like I have to add Aunt Theresa, who showed me that, no matter what the circumstances, you should always look and act your best self, and then maybe even have a little party!

Despite all the medical appointments, after the effects of chemo wore off, I was able to feel good and be active. The week was filled with wonderful moments, big and small. It's nice not to think about cancer all the time. I often think of Kris Carr (actress who lives with stage 4 cancer) who appeared on Oprah. When Oprah asked, "Do you spend every moment thinking about dying?" Kris responded with something like, "Heck no. Right now, I'm thinking, I AM ON OPRAH!!!"

Overall life is good. On top of that, I feel like people are opening their lives and their selves to me in a different way than before, so I am trying to pass that along and do that with others I meet. On my end, it feels like you are creating a state of grace that makes miracles possible. Thank you for being so generous of spirit. Not only does this have a huge impact on me and my family, I feel like this must be shifting and impacting our world in a positive way. If a butterfly flapping its wings can create weather patterns on the other side of the world, just imagine what all our bigger acts of kindness are doing!

If you are so inclined, do continue to send prayers that the chemo is killing those cancer cells, and that I find any other avenue I need to heal this.

Much love,
Marie

Feeling so much better - how to say thank you and give back?

2010-03-29T21:45:00.000-07:00

It is not lost on me that this is Holy Week, and I hope you have a very blessed Seder or Easter (or both). And for those of you who celebrate neither, then simply a very blessed week!

I decided to write BEFORE chemo this time, because it has been such an AWESOME week and it is way more fun to spread that kind of positive energy!

I believe that several things that contributed to this most incredible week:

I am finally pulling my head out of the sand and noticing more of what is going on around me.

Two things stood out:

I read a book called Making Toast. It is written by a father who moved in and helped to care for the young children of his daughter, after she died suddenly at 38. It was not as depressing as it might sound. And a line from the book stood out (at the risk misquoting this):

"You are not the first family to experience this, and you are better equipped than most to handle it."

I feel like that is so true of our family. Though this path isn't easy, it is much harder for many others, and we are very aware of that.

And, the priest on Sunday asked us to pray for an 8-year-old with a brain tumor. THAT was sobering.

So, I think I feel better because life is finally not "all about me."

My energy level is back to normal, and I've been thrilled to do very normal things. For example, we were invited to a birthday dinner party, said yes, actually were able to go, had a great time, and stayed till the end. On top of that, Tiron and I didn't think about cancer once that whole night. It was so fun; I am still carrying the glow from that!

I started my Chinese tea. It is truly (and maybe literally) wild. It looks like a bag full of things that my kids might gather from the woods: tree bark and twigs and dried mushrooms. You put it in a glass or ceramic pot, cover it with water, and cook it down slowly for about 3 hours. It leaves a woodsy smell in the house, which I don't mind, and I don't even mind the taste. The most difficult part is that I need to drink it at night, three hours after eating anything, so I am no longer snacking after dinner.

I wasn't sure whether this was doing anything, but at some point I realized that, since I started drinking the tea, my chest pains disappeared! Yay! (Both this time and two years ago, after starting chemo, I had strong chest pains every night.)

I started acupuncture. Since my surgery, I couldn't get off my duff to make any appointments with any kind of complementary medicine, including the acupuncturist I love (Kiiko Matsumoto). So Marilyn booked an acupuncture appointment for me with her acupuncturist (Marisa of Newton Center Acupuncture), then picked me up in her car and drove me there.

After the first appointment, I wasn't sure that anything shifted. But within an hour, I told someone to buzz off (in stronger language), which was really unlike me, and really freeing! Hmmmm. I ended up going back to Marisa (again, mostly out of laziness), and that time, within an hour afterwards (warning: possible oversharing!), food starting moving really quickly through my system. It was really wild. I do want to return to my own acupuncturist, but I have to say that I will first return to Marisa, mostly out of curiosity. I want to see what might happen next!

I have a couple other complementary medicine avenues I am doing as well, and lots of aromatherapy.

I ran into old friends, everywhere, and learned of some really cool connections among friends. All week, I kept running into people I've thought about but haven't seen in years. After a few days of this, it started to feel like that old show "This is Your Life." What a wild ride. I really loved seeing everyone!

I look pretty normal. Well, as normal as I look. For those of you who live outside Boston, I look pretty much the same as I always do. That helps!

The only downer -- and I'm not complaining! -- was that I have this sore throat that I can't seem to shake. I am one of those people who never gets sick (if you don't count cancer - ha ha) so I have a new appreciation for what everyone else goes through when they get a cold. For those of you who get colds, my apologizes if I haven't been as sympathetic to you as you needed! I had no idea you were that uncomfortable!

Our six-year-old son asked this week why we aren't making dinner for our friends, because they are making dinners for us. (By the way, the kids totally eat all their vegetables if someone else cooks them! Go figure.)

We all really appreciate all your help and support, and our son voiced the sentiment that I've struggled with recently: How to give back in some way? You are all carrying us, in so many ways, and it would be wonderful to share all that we receive back with you.

So I will leave you with one more high point from this week: Someone told me, "I live my life differently because of you." That touched me and I carry it with me.

I hope you are enjoying life sooo much -- there are so many cool things that are going on, and you are part of all of this uplifting energy.

Again, thank you for your prayers and good thoughts and for banding together to help us all. It truly makes a difference in so many ways for us, and I pray it is all coming back to you, and more!

Much love,
Marie

Making change (joke)

2010-03-24T13:44:00.000-07:00

The Dalai Lama is visiting New York and decides to stop at a vegetarian hot dog stand. He says to the vendor, “Make me one with everything,” and hands him a $20 bill.

The vendor ignores the spiritual part of the request but prepares his feast on a bun, hands it to him and turns to the next customer.

His Holiness leans forward and asks for his change.

“Ah,” says the vendor, “change must come from within.”

Second round of chemo is better, plus doing Chinese teas

2010-03-17T13:48:00.000-07:00

Chemo again yesterday. I need to drink more water, for sure, but otherwise, this week is better than my last treatment.

After the prayer service last week, it felt like I was magically transported from shaky ground, over a huge crevice in the earth, and then placed onto solid ground. It was a huge shift that you all made for me, so I know that helped make this better.

On Monday, I did a one-day trip to North Bennington, Vermont (3.5 hours each way in the pouring rain) to see this Vietnamese doctor. I wondered if I was crazy, desperate, doing a pilgrimage....in any case, off I went. I met with him, and by taking my pulse and looking at my tongue (I love the non-invasive approach of Chinese medicine!), he determined that my liver, spleen and heart were weak, and suggested that I cut back on the chemo if possible, to give them a chance to strengthen. I've been having lots of chest pains since I started chemo (and I had these when I did chemo two years ago), so it made sense to me. And he gave me a huge bag of Chinese teas for me to make (and drink) on my off-chemo weeks.

On Tuesday, I got to my appointment and, instead of seeing the doctor, I got her nurse. I had never worked with or even met or heard of her nurse before, not once in the three years I've been going there. And, one of the things that makes this bearable is having folks who know me and know my history. This change didn't feel good.

But, I was very wrong. She was great. I got to talk with her about all my yukky side effects from last time, she suggested a 20% lower dose of all the chemos. a new drug regimen for the days following my chemo to help with the nausea. I still hate taking pills, but she and others convinced me to give these a go.

When I got to the infusion room and saw my chemo nurse, she asked me how my appointment went. Apparently, they all discussed how I would handle seeing the nurse instead of the doctor, and weren't sure it would fly. I guess they know me well.

Chemo, other than the drugs, was like a little party -- thank you to everyone who was there!

Again, I wear the chemo pump for two days, and that in itself makes me feel yukky. Plus it has an odor about it. But I also recognize that alot of this is attitude and mine seems to be shifting a bit.

OH, then this morning, I was going to cranial sacral therapy at 10:00. At 9:30, my sorry butt was still in bed. Showering is a huge hassle with this pump hanging off my chest, but I didn't want anyone to do any kind of body work on me without showering! So, I was going to be late. I'll call her. Computer crashed, so can't look up her number. Ugh. Got to the car. Battery dead. I switched to Tiron's car, and finally got there with 10 minutes left in my appointment!

So, life is challenging, but the appointment was across the street from a chocolate store, and I got to get the kids their "Nut Free Easter bunnies" and other treats, so that is big plus. I am so conflicted about them eating sugar.....

Thank you for your support and caring. It's all coming right back to you.

Love, Marie

The prayer service was power and life-altering

2010-03-14T19:53:00.000-07:00

The prayer service last Sunday evening was beyond words. At first, I didn't want to write anything about it, because I didn't want to trap it in the realm of words (if that makes sense).

And after that, I realized that I don't really have the words to describe it. Moving, overwhelming, beautiful and full of hope are descriptions that come to mind, plus a whole host of other emotions that are so intertwined that I can't sort through them individually.

Thank you for creating that. For everyone who came from near and far, and for everyone who did their part from where they were: Thank you. I continue to be amazed at the power of this group.

One specific outcome (and there were many): During the service, I was praying for light leading to my next steps. After everyone left, and there were just a few of us hanging out, Jamie (a woman from the church who I hadn't previously met in person) asked me about my "story." So, I dove into that, trying to keep it brief and relatively interesting so that I didn't bore this new friend. She kept saying, "I want to introduce you to Liz. I don't know why -- I just feel like I need to introduce you." And Maria (who made this whole thing happen) kept saying, "Didn't you go to New York? Or isn't there something about D.C.?"

Turns out, Liz had the surgery that I want to have in D.C.! It isn't really done in Boston and the more I talk with my Boston doctors, the more I doubt my instincts to do it. It isn't like there are alot of folks who have had this particular surgery, either. But, Liz had it! It was like an answer to my prayers, and I got to meet Liz this week (who is doing wonderfully).

As I said, this is just one of so many outcomes. I want to hang onto that great feeling that I had after the service, and I somehow want to spread it around. I hope that all of you who participated in some way felt that, too, and can carry that with you.

Chemo on Tuesday.

Love, Marie

Prayer service invitation; chemo continues to be hard

2010-03-03T11:21:00.000-08:00

Maria and Todd Giatrelis have generously set up a prayer service at St. Joseph's Parish in Belmont for this Sunday evening, March 7, at 6:00. It will immediately follow the 5 pm. Mass.

This prayer service includes gospel readings, music and a special blessing -- the Sacrament of the Sick. Yes, this is the exact thing that I had been running from, but I'm learning that, no matter how fast you run, sometimes, things catch you!

If you are able to join us, St. Joseph's is at
354 Waverly Street
Belmont, MA 02478
617-484-0279

It is not far from Belmont Center, and you can park in the lot or on the street. You may dress any way that feels comfortable to you (blue jeans are fine). Kids are welcome; this is a family-friendly church. My kids won't be there, though.

If you cannot join us, please feel free to pray wherever you are.

Thank you.

This chemo has been especially hard for me. It is only week one, and I didn't even get all the drugs this time, and I am still sick from it. I don't know how I would do the full dose, because right now, it feels like I am living only to do chemo and unable to do anything else. Not only am I physically ill from this, I've caught a cold (which I never do), and a piece of my skin literally ripped open.

I am seriously considering quitting it; my oncologist suggested a one-week hiatus and then checking in again. Kudos to all of you who have gone through this!!!

Marie

P.S. RSVP not required for the prayer service but nice to know if you are coming. And while it starts at six, feel free to arrive when it fits your schedule. I expect it will last 30 - 45 minutes?

First chemo session

2010-02-24T11:17:00.000-08:00

Chemo happened yesterday. I thought I would be pleased to get this underway, but mostly, I feel bummed out.

The folks at MGH are really really nice, and I feel very cared for. It amazes me how "normal" many cancer patients look. If they weren't waiting for a doctor or hooked up to an IV, I would never know that most of them are patients. Of course, there are always patients who arrive in wheelchairs or on stretchers, and I say a little prayer for them, and give heartfelt thanks that I am not in that position.

Your prayers were again so effective: The doctors decided on a chemo and we all felt the plan was reasonable. Thank you for your prayers for that. That conversation was less stressful than I expected! Sometimes they provide info and we need to make the decision on the spot: It is really hard to make those kinds of decisions in the moment, and having them think it through in advance makes it much easier.

This chemo regimen is different than my last. Thankfully, because that last one didn't do the trick! This one is called FOLFORI (pronounced Fol-fury) and typically the first-line drug used in Europe. I kind of like that. They added one other drug to the mix, but I've pushed that name out of my brain, trying to pretend that I am a normal person and not really taking chemo.

They are still waiting for some genetic testing results on my tumor, and once those return, we will add another drug to the regimen. So I guess I started out with "chem lite."

Marilyn, Tiron and I headed to the infusion unit, where I got hooked up to an IV pole and the stuff drips into my veins over about two hours. It is freaky that so many people there remembered me. And I got my old nurse! I was thrilled with that.

This process involves alot of waiting, and the waiting is really hard for me. I feel like, if my time is limited, I don't want to spend it waiting for nothing. But, wait you do. My doctor took two hours before she got around to writing the chemo prescription. Next time, I'll ask her to do it while I am in her office. I forgot that little trick.

We got seats with a fantastic view of Boston, and were apparently the envy of some other patients. One guy complained to his nurse that he didn't have a better seat. Strange to have envy enter that kind of situation, but human nature is everywhere. Or, as my friend the hospice nurse says, "The closer people get to death, the more of their true selves come out."

The chemo was hard on my body, so they had to give me other drugs to counteract that. I watched half of Julie and Julia, which was nice and relaxing and soothing in a weird way. And then it was all done.

I got hooked up to my continuous infusion pump to wear home. This enables me to go home and keep getting chemo while I go about my day. If you see me on some Wednesdays and Thursday mornings, you will see me carrying a bag and perhaps you will hear the whirring of the pump. I try to remain grateful for this invention that lets me go home, rather than spend two days in the hospital, but I have to say, I truly resent it. It gets removed on Thursday, I get a shot on Friday to bump up my white cell count, and the cycle starts again in two weeks.

How many sessions? The bummer is that, this is for the foreseeable future. So, I can't do a count down. The doctor said that the chemo would need to get rid of ALL the cancer cells. She also said it is unlikely to do that. I think of it like killing cockroaches: It just takes one to get that whole colony up and running again. I try to view this like I have a chronic condition, but my head isn't quite there yet.

The good news is, they are willing to run these treatments around the rest of my life. So I can skip sessions to travel, for example, which I couldn't do before.

I'm excited about this, because I think that will help the quality of our family life. I'm also really excited because I want to go to the Hippocrates Health Institute in Florida, and this will enable me to take time off to do that.

The kids have been fantastic. Not that they haven't been scared or worried, but they are really rallying when we need them to. and Tiron is keeping all my medical records straight, when all I want to do is toss them in the trash.

Please keep your prayers coming! I will take any prayers, but someone advised me to be specific, so here it is:
That the chemo kills the cancer cells and is tolerable.
That the boys (including Tiron) grow in inner strength and cheer.

Much love to all of you.
Marie

Healing well and chemo soon

2010-02-22T20:07:00.000-08:00

Thank you for all your prayers and good thoughts. I am healing amazingly well from my most recent surgery, and I got the staples removed today. Yay! I even walked to Harvard Square and back, a total distance of about 2 miles.

The good news is that they got all the "big" tumor out, with clean margins. Whew. The not great news is that there are more tumor cells in there. Some are attached, some are floating around.

Which means.....next up is chemo.

It was clear that I would need to do chemo anyway, but I was kind of hoping that there would be no sign of disease remaining. Oh well.

So.....given how powerful all your prayers and good intentions were for the surgery, I wonder if I can ask you for another round?The doctors need to decide which chemo to use. There are a few options, and I would love it if they picked the right one the first time around. (Obviously, the chemo I did two years ago didn't quite do the trick!)

Thank you for your prayers and good intentions on our behalf!!!! You can be sure that I am sending good vibes back to you.

With love,
Marie

The power of a large group praying

2010-02-10T14:27:00.000-08:00

THANK YOU THANK YOU THANK YOU!

I am totally humbled by the power of all your prayers, and the prayers you have generated on my behalf. And all the good karma you are putting out there (all you incredibly good-hearted non-prayer people).

I got out of the hospital on Monday and am doing well. In addition to saying thank you for helping me through this, I wanted to share specifically with you how tangible that power is. I feel like I am witness to more than one miracle.

You helped pray for a successful surgery and a smooth recovery.

Last summer, I had a smaller (but still big) surgery. That one involved one surgeon and lasted about 2 1/2 hours, the incision went from belly button to pubic bone and they removed only one body part. After that surgery, I couldn't get out of bed by myself, I could barely walk down a hallway in my house, and I was down for about 8 weeks afterwards. And skinnier than I've been since, well, junior high. Plus, they gave me injections that left my arm completely black and blue.

This time, the surgery was much bigger in every way. This one involved two surgeons and two other doctors; it took 71/2 hours. They removed the same body parts as last summer (I had them rebuilt after that surgery - those obviously didn't last long!), as well as a full hysterectomy and a few other areas where they found tumors. I woke up with a colostomy bag on my left side, more than 25 staples from above my belly button to my pelvis, and a drain on my right side.

BUT, from the first day, I could get out of bed on my own and walk the halls. My spirits were surprisingly good. Even though the news wasn't ideal (that they found more tumor than expected), I really felt a sense of hope and possibility. I got to learn a bit more about the cards I am holding. And this time, there were absolutely no bruises from the injections.

I attribute this totally to the power of your prayers. I am in awe of the tangible, physical differences this made that no one can explain. It is not my attitude; I can't claim credit for that. I was pretty bummed out going into this surgery (little rectal cancer humor there) and not even thinking that there was hope. But I came out of it with hope and more.

I asked that you pray that God guide the hands of the surgeon, and I feel like those prayers were answered and more. One of the surgeons came to speak with me after the surgery, to tell me about why she removed all that she did. She explained that some of the tumors were obvious, and for others, she couldn't see them but just had a feeling that something might be there. In those instances, she removed those parts, and turned out to be right. I feel like something larger was guiding her, and that your prayers that God work through her hands were answered.

You prayed for our little boys, that they come through this, not only stronger, but feeling blessed. The boys did fantastically well. I appreciate everyone's tangible support on that end, from their teachers through their playmates and the parents of their friends. When I returned home to see them, they were taller, yes, but also stronger and more independent in ways that are hard to describe. Totally an answer to our prayers!

Some more signs:

The priest at my church was trying to convince me that the Sacrament of the Sick is about healing. He offered to see me before surgery, but I wanted nothing to do with it. I still think of it that sacrament the same way that I did when I learned about it as a child, as the sacrament of last rites. When I was little, I looked at sacraments like Girl Scout badges, something to work toward and collect. (A type A even then, I hated that the system was set up so that you couldn't actually get ALL of them!)
Anyway, I declined. I wasn't ready to add that one to my list.
In pre-op, they let me use my phone (tee hee) and I was checking messages. A friend wrote me to say that she was going to church to say a special prayer for me. I read that message, looked up, and there was a priest. Holy crow. Freaked me out. He asked if I wanted to receive the Sacrament of the Sick. I felt like, at that point, I wasn't really supposed to refuse. And it turned out to be okay -- I'm still here!

After my surgery, I was assigned to a room with a Sicilian roommate. This was totally comforting to me, seeing the whole extended family march in at the start of the day, and out at the end of the day. Because, of course, Italians move in a family group. And EVERYONE, from the grandparents to the youngest children, go to visit the sick. I can remember doing that as a child. Lying in bed, listening to all the Italian conversation, I felt like I was five years old again at my grandparents' house, and that was cool.

A day or two later, as I walked / shuffled :-) the halls, I heard beautiful singing coming from one room. I peeked in and I couldn't see the patient. He or she was totally surrounded by a crowd of African Americans, standing so close together that their shoulders overlapped. They were singing hymns, and while I couldn't understand the words, the spirit of the songs just lifted me up. I stood there listening and hoped that their friend and relative was being lifted as well, and I gave thanks that they were there.

Thank you for your notes, your help for our family, your thoughts and prayers, your good deeds toward others, your candles. Thank you for the food, for adding me to countless pray lists, and for totally being there.

Though I do feel really good, I am clear that we are not out of the woods yet. The folks at Memorial Sloan Kettering said it directly: There is hope, but both the surgery and the follow-up chemo / radiation treatments need to go 100% right to get rid of this.

So, next up is chemo. I'm supposed to start as soon as possible. Yuck. But gearing up for it. If you want, I'll be back in touch when I know more.

In the meantime, please know what a huge difference you made and continue to make, and that you make miracles happen. And I am totally grateful.

Love, Marie

Home again, home again, jiggity jig

2009-11-24T13:54:00.000-08:00

This is a HUGE THANK YOU to this rockin' group! I really appreciate EVERYTHING you did and I wanted to tell you that those positive vibes really carried me through, in ways both specific and non-specific.

For you scientists, here are some specifics:

- I got a GREAT team at the hospital. Every single person was fantastic. Given the number of people who worked on me on Friday and throughout the weekend, this beats random odds.
- The IV person understood that I am a hard stick and was great about only sticking me twice.
- I didn't cry before they put me under. I didn't even feel like I needed to! This is normally a hugely emotional moment for a control freak like myself, but I felt like I was being safely held. Thank you!
- The operation went smoothly and was a success.
- I was told to expect to be in the hospital between 4 and 7 days; I got out in three (and, two, if you don't count my surgery day).
- I am at home, up and walking around, and not depressed (I was pretty depressed after my last surgery).

In addition to all that, this time around was so much easier in so many ways that I can't list.

I do believe that this group can change the world. Try it in your little piece, anywhere you want to just impact and have a little fun. I know that those good vibes are pushing good things forward every day. Thank you for sharing them with me.

Much love,
Marie

Tapping into the well

2009-11-19T22:04:00.000-08:00

Hi everyone,

I have a surgery coming up on Friday, Nov 20 at 11:30 a.m. (assuming all goes according to schedule).

Last time through, I tried to do it without the power of this group, and, frankly, I didn't do it so well on my own. I'm finally getting the message that life is a team sport!

If you are getting this e-mail, you have been helpful or interested in the past, or faked it really well. So if you have a chance, please say a prayer or send some positive vibes this way on Friday, or anytime over the weekend (as I will be in the hospital for a few days).

The short story: I had a recurrence in August, and a huge surgery to remove the tumor and all the surrounding area. That area was rebuilt, and I have a temporary ostomy bag. My surgery tomorrow, to remove the ostomy bag and re-attach my intestine, is relatively minor compared to my last surgery. But, as the joke goes, minor surgery is someone else's!

So, I'm taking nothing for granted and would love your support.

Thanks so much!

Love, Marie

CEA now considered normal...barely

2009-10-02T20:05:00.000-07:00

Thank you so much for your supportive messages, your kind words, positive thoughts, prayers, phone calls, visits, wisdom, EVERYTHING. Thank you for letting me air my frustration and fears. You guys are such an awesome group!

I got my blood numbers and at 3.4, I'm told that they are below what is considered normal and that is good.

While I am relieved at the trend in the right direction, I can't just settle for that, right? I grilled the doctor on the fact that everything I've read says that 2.5 and below is normal. They assured me that it depends on the labs and other things, and that for patients at MGH, 3.5 and below is considered normal. It does make me feel a bit like a remedial student, not expected to do the things that "normal" kids can!

Anyway, no more tests and blood tests for now. whew. Thank you so much for talking me off the ledge.

My next step: To make sure that my last surgery healed so that they can reattach my colon. I was supposed to do that on Monday but my butt is still so sore that I can't put it through that procedure. (They shoot a liquid into it. Lovely!) So I'm waiting on that for a few weeks.....One step at a time.

I have to say that getting positive news does so much for my attitude toward life. I can easily see how this could get someone totally down, and can really appreciate how heroic (for lack of a better word) it is for someone to have a positive attitude when facing a stream of bad news.

For now, though, I'm so happy to be where I am.

Much love to all of you,
Marie

Coming out of my isolation and slowly resurfacing

2009-09-14T16:10:00.000-07:00

You guys are getting hard to ignore! I don't know how to say thank you for hanging in there with me, in so many ways. All the flowers have been a beautiful and touching surprise (We are here! made me cry!), and the e-mails and candle-lighting and prayers.....it's amazing and overwhelming. And, as much as I want to crawl in my hole, I'm starting to feel positively rude by not saying anything. Thank you for forcing me out a bit, and for shining a light.

This surgery has been my hardest so far, both physically and emotionally. Definitely hardest emotionally. I came out of my other surgeries feeling a bit like Superwoman ("This cancer can't get me down!") and now I feel more like, well, woman ("Yikes --I'm human").

I've spent alot of time feeling very mortal, wondering how long I will live, wondering what to do next. Seeing cancer and death everywhere. Feeling sorry for myself and the kids. Mostly feeling sorry for myself
and the kids.

The surgery was open abdominal surgery, meaning the cut runs from belly to pubic bone. I'm feeling better but still so sore
there! And I have this "bag" hanging off my belly. I guess it is convenient, but feels so weird. My intestine sticks out of my abs and pours into that. Weird. And grosses me out every time I change it (about every four days). They say that I can wear normal clothes soon, but I can't even imagine it! You know how, when you eat gassy foods, your belly expands? Well, this bag expands, but only on one side of my body, so that looks weird AND there is no way to control the gas as it comes out, so THAT is funky, too (though, it doesn't smell because the bag contains it -- you just get the sound). And the "rebuilt" part of my body inside my butt gets sore, too! So, alot of activity there.

I'm finally walking a bit more. Still slowly, and not far, but it is progress - yay!

The path report was overall good. The lymph nodes were clean, so that is great. But the tumor ran to one edge. The doctors do not recommend more radiation and chemo -- yay -- but, here is the hard part, they tell me that they will give it to me if I want it. Which means, it is up to me. More responsibility than I think I want. I soooo do not want to do more chemo. The memory of it is too awful and fresh. At the same time, my sons fall asleep next to me saying, "I love you so much" and I look at them and think, can I tell them that I did everything possible?

On the other hand, I really want to get back to normal life. There is no proof that more chemo will really do anything. I have another meeting tomorrow to discuss this with the doctors and am trying to get my questions in order, to try and figure it out.

There is more, though. I have felt so disconnected from my intuition, from God, from everything that I trust with my life. I feel like I am getting signs, finally, that I am connected to the Universe. I can tell you more about them if I haven't already. So I am trusting and hoping for a sign about the right decision to make next.

Those are all the logistics. But, in my little depression and isolation, I think I made it even worse by not connecting with anyone at all. Thank you so much for being there. I really tried to crawl into a hole, and you wouldn't let me, and I appreciate that so much. Thank you from the bottom of my heart, and I thank you with my life.

I'm going outside to breathe some fresh air, and will be back online soon.

Much love,
Marie

Found the tumor via surgery!

2009-08-31T10:10:00.000-07:00

To those who have written recently, thank you so much for your notes, prayers and concern. I can't tell you how much it helps!

Catching up over the past couple of months:

In May, my husband had surgery for thyroid cancer, and had his thyroid removed. That same week, my blood tumor marker started to rise, indicating possible cancer. The PET CT showed some "activity", but subsequent ultrasounds and an MRI could not find a tumor. I wrote it off as a medical miracle.

In July, I got re-tested, and my blood tumor marker was high enough to indicate definite cancer. A new PET CT showed "activity", so we skipped the ultrasound and MRI and went straight to surgery. There was a risk that they would find nothing, so they left it up to me, and I decided to take that risk and move forward with the surgery.

It was almost comical to try scheduling my husband's radiation therapy (where he cannot be around other humans for quite a few days) and my surgery (where I will need his help). Plus, it is August and the surgeon was planning her vacation.

The week before surgery, Tiron had radiation therapy, which required him to be in isolation (but not in the hospital, go figure). So I left town with the boys and had a good time visiting relatives. When I returned, I went into the hospital for my surgery.

The surgery, overall, went well. They found a pea-sized tumor in my rectal area, and removed it along with my entire rectum, lymph nodes and fatty tissue. I lost a ton of weight as a result, but I don't recommend this as a weight loss strategy! It was open abdominal surgery, and, wow, I'm sore! They were able to reattach things, and I have a temporary "bag" while that area heals. I'm grateful that this is temporary.

The bag itself is a weird concept. I had no idea, but they actually PULL YOUR SMALL INTESTINE THROUGH YOUR ABS. It sticks out of my stomach like a tongue. Weird. And the bag stocks to my skin and hangs from that and catches whatever comes out.

The bag itself is easy to manage, but psychologically, this is hard to get used to.

The other hard psychological thing is simply going through all this again. I'm not bouncing back the way I have in the past, with strong faith in God and in the future. I worry whether I will see the boys grow up, and realize more acutely that people do die young. It makes me really sad, and while I try to change my thoughts, these are the ones that come creeping in.

I also feel a bit removed from God and from the greater good of the Universe, though I do keep getting various signs. Like, I was in bed in the hospital, feeling sorry for myself with this bag, when my much younger roommate, almost as though she could read my thoughts, volunteered to tell her story and that hers was permanent. And she was dealing with it much better than I was.

Or, when I was in the hospital, I remember really needing to connect with this guy, Ray. Ray was one of the guys who built our house, not even the main lead guy, just here occasionally, but I always got a particular calm when he was around, and he prayed for me last time around. I remember really needing to see him, and thinking, oh, well. I can't just call him.

When I got home, Tiron told me that Bob was going to be here soon to fix the screen doors. But Bob happened to send Ray. It was like an answer to my prayers. So, there are those events, and I'm trying to grab onto those and claw my way back to some place of trust and peace. But I'm not there yet.

My parents are here to help with the kids and the running of the house, and the neighborhood has really banded to together and they are delivering meals. Logistically, we are doing okay, and I just have to pull myself out of this ditch! So do send prayers, positive thoughts, whatever you can spare!

I am waiting for the doctors to call today with the results of the pathology report, and it is making me more anxious than I can remember being.

I hope you all are doing well! It has been a glorious summer overall, and I LOVE this weather.

Much love,
Marie

Preliminary results are in, and no clear answers

2009-08-21T10:20:00.000-07:00

Well, just after I posted, the phone rang and one of my doctors was kindly calling me with preliminary results. They've been putting off calling me because they don't yet have a recommended path forward. Yikes.

Here is the bottom line: If "cancer free" is the best news, this is second best on the list. Basically, the lymph nodes are clean (yay) but one margin is not. This means, they found tumor cells near the edge of the area they cut, so they need to assume that there are some left behind (little rectal humor there).

Of all the margins, this is the "best" one to still have tumor cells because there are no adjacent organs, but no one quite knows what to do about it. They will discuss it at a conference at the hospital this week to get the recommendation of other doctors.

So, options are, watch and wait (meaning, let the tumor make the next move), radiate, or do chemo, or any combination. More surgery for this is not an option, at least right now.

No clear answers, but at least there is something....

Love, Marie

Choosing my son's poetry over starting radiation

2009-05-28T00:02:00.000-07:00

Thank you so much for your notes and support. I haven't had a chance to write -- I find that, this time around, I am trying to stay more focused on my life and make the treatments more of a side thing, at least as much as I can. They do kind of take over.

Like today -- they wanted to schedule the set-up for my radiation for tomorrow (Thursday) morning. I appreciated getting it all overwith. At the same time, we are having this breakfast at Aidan's school, and he is reading a poem, and I didn't want to miss it. I did wonder, am I trading this one poem for a chance at a longer life? But the doctor said that if that were my son, he would go to the school and do this appt next week. It pushes back my chemo by a week, which I don't like, but I do want to make things as normal as possible for the kids. And me. I would hate to miss his poetry reading!

So far this week -- I met with the surgeon, who tried to get a biopsy. But, she couldn't find the tumor to biopsy it. I'm not convinced that it just disappeared, and neither are they, so I'm up for another try for a biopsy on Monday. These are not fun!

Today, I met with my oncologist and my radiologist oncologist for over an hour to talk about my treatment plan. So that was useful.

MRI on Friday!

More tests

2009-05-26T13:26:00.000-07:00

I'm so sorry I didn't get back to you sooner -- things have been crazy and I've just been getting used to all the news. Plus, my hip is hurting like crazy from my bone marrow biopsy, but more on that to follow.

Let's see....there is good news and there is "could be worse" news.

The good news is that it isn't pancreatic or any of the other scary cancers that were possible. Yay!

I guess that is also the "could be worse" news. There is a local recurrence (meaning, same place as last time), and it is treatable. Now that the dust has settled, I'm wondering why we only found it now; why, if it wasn't there before then why it grew so much in three months; and other scary things. I'm trying not to go there -- from what I've discerned, we don't know enough about cancer to know.

BUT, we do have a path forward. My week is filled with tests. Last Friday after the diagnosis, I had a bone marrow biopsy to see why my white count remains low. Not fun, but bearable.

Today (at 9 am after the holiday weekend), I had an appointment with the surgeon. She was supposed to biopsy this thing (it looks like 3 centimeters) by going in the out door (so to speak) but couldn't find it. Not the most fun way to spend my morning! The good news, though, is that the location of the tumor looks high enough in my colon that I hopefully will not need a bag after surgery.

Tomorrow, I have an appointment with my oncologist and the radiation oncologist. And on Friday, I have an MRI.

Funny story: I was supposed to have the MRI on my birthday. When I heard that, I thought, not my first choice, but okay. Then they said, "Do you need an anal probe?" and I thought, they have got to come up with a better idea for a birthday gift. Thankfully, I don't need an anal probe after all.

Back on topic: After all these tests, assuming that all is as suspected, I will! have six weeks of combined chemo and radiation. The chemo this time will be wearing the bag for five days a week, and I won't sit in the hospital for that other part of chemo. I'll go into the hospital every day for radiation. This is all to shrink the tumor.

Then I have six weeks off, for the chemo to continue to work and for my body to get strong for surgery. Then I have surgery to remove the tumor. While I am open, they will irradiate the area to basically kill every living cell in that part of my body.

I think that is it!

I'm a bit bummed about wearing that bag during the summer, I have to say, and am trying to stay focused on the fact that I can and don't need to be in the hospital to get chemo instead.

On Friday, a truck got stuck in front of our house, blocking our driveway. We couldn't get out for my doctor appointment so we borrowed my in-laws' car. After we got to the hospital, I ran into my oncologist before my appointment, and I saw in her eyes that the news wasn't great.

I supposed that, if they didn't find anything, I would still be worried, so maybe this is good!

Argh.

Love, Marie

After the PET CT

2009-05-20T08:03:00.000-07:00

Thank you so much for the great vibes! I did the whole PET CT routine myself and I think I did okay! I kept picturing a friend in the chair next to me, and that made me smile. But I'm glad you weren't there. Though the official line on the radiation I got is that it is okay to be around the general public, the nurse, unprompted, told me that her off-the-record opinion is that I should stay away from people as much as possible for 20 hours. So I am.

Because I am a hard stick, I arrived early to get an IV nurse. She did this really cool thing to try and find a vein -- instead of the rubber tourniquet, they used a blood pressure cuff and found a vein, in my arm, that I don't think anyone's stuck before. And did it, first try. That nurse was awesome.

The radioactive stuff that they injected into my veins came in this metal case with extra padding inside to protect whomever is carrying it. Lovely thought. No wonder my veins rebel. They probably wonder what toxic chemical is coming next.

The people were really nice, and the test went smoothly.

After the whole thing, I went to Whole Foods to get big bottles of water and some organic greens to balance out the whole experience.

Results are in on Friday! We are visualizing randomly fluctuating cea levels for no apparent reason.

Love to you all,
Marie

Moderately high CEA

2009-05-05T06:50:00.000-07:00

I'm bumming out.

One of my lovely oncologists called today. Sigh. My first impulse is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.

CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google; I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for). My doctors feel anything below 3.4 is good.

My white counts have gone low again, too.

I hung up the phone and cried.

Then, life continues. The phone rang again. I thought it was the doctor with more news. But, it was a friend. We hadn't talked in awhile and she was on her way to pick up her kids, with a few minutes to spare. When she innocently asked how I was doing, I burst into tears again. But I have to admit, it felt so good to talk with her. I am grateful that she acted on her inspiration to call me at that moment. It was just what I needed.

Connecting with Susan gave me energy to take the boys and do some retail therapy at Winston's Flowers. A few containers, plants, and flowers later, I felt a bit vindicated. The boys had a great time playing in the water fountains and were soaked through. They wanted to ride home naked. Fine with me.

When I drove up to the dock to load my purchases into the car, the saleswoman marveled at my calm. If only she knew.

I'm getting re-tested next week and hoping this is all just a fire drill.

CEA levels higher

2009-05-04T11:23:00.001-07:00

Once again, a call directly from a doctor. Sigh. My first thought is to hope for good news, but, thankfully, my doctors get quickly to the point and I don't have to hope for long. My CEA is moderately high at 5.7.

CEA levels are tested through a blood test, and I didn't pay much attention to this number in the past. Thank goodness for Google, I learned that normal for a non-smoker is < 2.5 ng/ml (don't know what ng stands for).

I'm getting re-tested next week and hoping this is all just a fire drill.

CT scan is clean!

2009-01-21T06:52:00.000-08:00

Yesterday was the inauguration of Barack Obama, our new president and a symbol of hope and renewal for our country. The changeover occurs at noon, whether or not he has been sworn in.

Yesterday, I had my six-month check-up appointment with my oncologist to get the results of my CT scan. In the waiting room, I met a man, his wife and brother. The man was in the first third of his treatment for colon cancer. I could see myself in him, last year at this time, and I could feel the difference in myself from then till now.

At five minutes to 12, I sat with my husband and oncologist in her office. We commented on how we were missing the inauguration, then she told me that my CT scan showed no sign of cancer. YAY!

We talked about other things -- the results of my blood tests, my continued low white count, the little and thankfully unchanged things they see in my lungs and thyroid, and kids. Always kids -- a neutral topic that somehow connects some of us.

And then, we left, with a new lease on life and a new president!

Ms Radiation

2009-01-12T20:42:00.000-08:00

My periodontist requested a full mouth x-ray. Just a routine thing -- they like to have new ones done every three to five years.

So I called the dentist's office to schedule it. The conversation went something like this:
"You don't need to make an appointment. You can come in anytime tomorrow," they said.
"No problem. I have a CT scan in the morning, but I can come in the afternoon. Just drop by anytime?"

Why on earth I mentioned the CT scan, who knows. Why would they care? But good thing, because the response was,
"Oh, we don't like to give you too much radiation in one day."

Yikes. I hadn't thought about that. Well, I did, but chose to ignore it, filing under the necessity of modern living.

"Okay....hmmm..." I looked at my calendar. I now wanted some distance between those two appointments. "How about early February?"

"Sure. February 5th?"
"Oh....I have a mammogram that day." What am I, Ms Radiation these days? This is kind of scary.
I think a bit then say, "This isn't urgent. Let's just do it in March. I'll give you a call."

Wow. Between all these tests, I'll be radiated from my pelvis up. Would it be called a "healthy glow"?

Anticipating my six month CT check-up

2009-01-09T09:06:00.000-08:00

So, my CT scan is coming up. This is my six-month check-up after finishing chemo. I have the scan next Tuesday. Then the following Tuesday, Inauguration Day, I meet with my oncologist to get the results. In fact, my appointment is at 11:30 am, just about the time of the inauguration! I hope this is the beginning of a wonderful new phase for all of us.

This weekend, I started to obsessively plan trips. I'm not someone with wanderlust, so this isn't normal behavior for me. After recording every day off, long weekend and school vacation between now and April, I became a woman obsessed with planning places to go and things to do. I specifically wanted places that were fun, interesting, different, and potentially non-refundable. On top of that, I found a blank spot in my schedule and committed to taking a course this semester. Because, if I plan these things, there is a future, right?

I'm realizing that planning these trips is my coping mechanism for dealing with the stress of any upcoming tests. While I can often pretend that cancer is behind me, the next few weeks contain vivid reminders that I live under a bit of a cloud. There is my CT scan, and the follow-up appointment for that. Then, my mammogram (yup, still doing those!) and my follow-up for that. The good news is that these are all in a span of a few weeks, then it is (fingers crossed, lotsa prayers) back to life as usual.

But for now, I'm trying to drink lots of water so that they can more easily find a vein to get blood out, contrast in. I'm trying to relax. And I'm eating lots of chocolate!

Context for the messages

2008-10-27T11:07:00.000-07:00

I'm setting up this blog a bit "after the fact" in response to requests from folks to read all the messages. This is my first time blogging and my first message on it!

Two years after I was diagnosed and treated for DCIS (a very early form of breast cancer), I was diagnosed with colon cancer. With two young children, I was not excited about going through surgery, chemo and everything those would bring into my life. But, for some things, there is no way around them, only through them. So we moved ahead.

At first, I didn't want to tell anyone. Everyone had been so supportive through my DCIS, I didn't want to show up again all, "Hi! It's me again! Cancer vixen!" It also felt a bit like I was crying wolf.

Then a friend of mine, who also had cancer, noted that
1. This is not "crying wolf." This IS wolf.
and
2. People cannot help if they do not know what is going on

So, I slowly started to tell people.

I continue to be amazed by the support we received. It came from places I never would have guessed or have thought to ask for. I am also amazed by the reactions we received. Though there are some reactions that made me uncomfortable, those were truly few and far between. People were incredibly supportive and positive and did not make me feel pathetic.

In this blog are the messages that I sent to a growing support system as I went on this wild ride. I appreciate and relied on all the support I received, and felt so blessed as I traveled along.

I learned that there is just alot of love in the world.

Hope all is well with you, and happy reading!