Focusing on the good

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

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

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...

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!

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

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

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