Saturday, December 17, 2011

On the rebound

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

Monday, December 12, 2011

Chemo on Tuesday...

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

Sunday, December 4, 2011

No chemo on Monday!


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





Sunday, November 20, 2011

Request for prayers

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

Monday, November 14, 2011

Thank you and Palliative Care Conference

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

Sunday, November 6, 2011

Prayers for a good chemo week

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

Saturday, October 29, 2011

Blessings when you see them

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

Wednesday, October 5, 2011

Joy is back!


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 รจ 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

Sunday, September 25, 2011

Back on chemo and....an offer


Lio by Mark Tatulli





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

Friday, September 9, 2011

Surgery cancelled

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

Wednesday, September 7, 2011

The path to surgery is paved with tests and good intentions

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

Monday, August 29, 2011

It's Door #3

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:


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.


Be well, and hug someone today!

Love and prayers,
Marie

Thursday, July 28, 2011

Deciding among three treatment options

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

Wednesday, July 6, 2011

PET CT shows activity, requires further testing

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