Monday, January 30, 2012

Living stories

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,

Tuesday, January 17, 2012

CT scan shows tumors shrinking and other answers to prayer

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.

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!

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

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

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,

Monday, January 16, 2012

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 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,

Monday, January 2, 2012

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.