Wednesday, January 28, 2009

Light at the end of the Tunnel

Today is my 20th day in the hospital, and hopefully, the last.  After the stem cells went back in, I was told that it would take 10 to 14 days for them to begin working and my immune system to begin improving. The counts indicating that improvement, began to go up in the last 48 hours, and so the transplant itself has begun to work! Hopefully, I will be able to continue getting better at home in the next few days, and then start slowly getting back out into the least crowded, and therefore least germy, places around town.  

My experience in the hospital has been surreal. I am deeply grateful to have been at such a high quality facility. I have found, not surprisingly, that the essence of the hospital's quality is in its staff. Hundreds of people contribute to my well being every day. From the nurses to the patient care techs, from the people who prepare and deliver my meals, to the ones who stock the supply shelves, to the pharmacist that fills my drug orders. I am very grateful that they made this experience as positive as it could be, but I am really looking forward to being home, able to sleep through a night without being woken up every couple of hours, able to feel some sense of privacy, and hopefully to soon feel my energy restored!

Sunday, January 18, 2009

Playing the "C" card

Many of you are very aware of what the "C" card refers to, because you've seen me play it a time or two. Perhaps I have even whipped it out and used it on you. I'm not sorry. We all have the hand that we were dealt, and since I got stuck with this one, I should get to play the card when necessary. That's how you win the game, after all.

Did I take the metaphor too far? Too bad. I have cancer.

The truth is, I try to be prudent in my use of the card. I was reluctant in the early days, when I was first diagnosed, to play it at all, because I was trying so hard to just have a normal life. I didn't want to feel distracted at work, distant around my friends, or short with my family. I didn't want to need the excuse or explanation as to why I was feeling those things. But not playing the card was sometimes detrimental. At the time, I commuted to work every morning on the metro. Most mornings, when I stepped onto the red line train at Judiciary Square, the train would be full. Stoically, I would stay standing, even if I was so tired I felt like my legs were wobbling more than the train. At work, I would get defensive if I felt an assignment wasn't being given to me because my colleagues and supervisors were trying to protect me from too much work or stress. In lines, at parties, on people's birthdays and special events, I powered through. Asking a healthy person to give up their seat, acknowledging my need for shorter work hours, and backing out of plans when I needed to, would have all been reasonable for someone with cancer, but to play the card in those moments, felt like an admission of vulnerability that I wasn't ready to acknowledge.

And then, I had a year of remission. And in that year, I gained some important perspective. I began to see those decisions through the eyes of someone healthy again, and realized that I had done myself a disservice by failing to acknowledge my needs. I looked back at the moments when I had played the card, casual moments when it was almost always a joke – calling shotgun in a friend's car, picking where we were going for lunch, justifying a crude joke. I couldn't – or at least didn't – acknowledge the cause and effect relationship between being sick, and the daily physical and emotional challenges I faced. And I think I was scared that if I played the card when it counted, the response I would get would be disappointing. After all, the first time I desperately needed someone to act unselfishly, I was met with a crushing disappointment, when my close friend/roommate announced that she was moving out five days after my initial diagnosis.

A few days after being re-diagnosed, I found myself on the phone with a United Airlines ticketing agent. I had to change my flight home for Rosh Hashanah, because I needed to stay in town for testing and a bone marrow biopsy. The agent informed me of the financial penalty associated with last minute booking changes, and I found myself feeling sincerely justified in playing the card this time. I told the agent the last minute change was necessary because I had just been re-diagnosed with cancer. And to my surprise, she waved the fee without another question and wished me good luck. Several weeks later, the American Airlines agent with whom I was re-booking my flight home for Thanksgiving, did the same. I felt, on some level, as though I was abusing my situation, but the truth is, those tickets were actually being re-booked because of scheduling changes that could not have been foreseen. 

Similarly, when I realized what this treatment was going to entail, I knew that powering through and missing only two days of work during every round of chemo like I had the first time around, was not going to be possible. I was, as with the airlines, but a hundred times more so, relieved and surprised with the graciousness, kindness and generosity of my employers when I realized I had to take some medical leave. And I am learning constantly, in ways big and small, that at times, it is wholly healthy and self-preserving to play the card. 

Thursday, January 15, 2009


Today is the big day. Everything up until now has been building toward the day that the stem cells go back in and do to their little stem cell magic (additional explanation here). I must admit that up until now, I had not been viewing this day as the big milestone that my physicians had been building up (the instructional binder states that many patients think of it as a second birthday) but I find myself excited this morning. Maybe not as excited as I usually get for my birthday - there's no Neil's Hat Trick from Cake Love after all - but excited for the ending it may mark, and end to these 2+ years of life being being chased by this cancerous shadow. An end to the worry, stress and pain of all of this. So bring on the end, which of course marks a new beginning.
Thanks, as always to all of you for your calls, notes, and packages - the unpleasantness of this whole experience is infinitely eased by your love.

Sunday, January 11, 2009

Coping Mechanisms

Sometimes, to overcome a temporary moment of pain – small pains, like getting a shot, a burning injection, removing medical tape, etc - I like to think of specific pleasant thoughts or images in advance to distract me. Devoting my mental energy toward conjuring this image is empowering, and allows me to feel some modicum of control over a situation in which I really have none. In the weeks between this re-diagnosis and starting treatment, the weeks leading up to the election, my positive image was clear. Right before the needle went in, the test began, the barium was drunk, I would picture: Barack Obama, standing on the balcony of the United States Capitol, with his hand on the Bible, being sworn in as President of the United States by Ruth Bader Ginsberg (I know, I know, she's just an associate justice, but this was MY positive image, and John Roberts was not welcome). During more drawn out physical challenges, like scans that require staying perfectly still for an extended period of time or biopsies and other surgeries and procedures where I am only partially sedated, I try to visualize images that keep me calm. Usually the image I conjure up is rooted in a memory from camp: sitting in Mosh field or on Bayit Hill on a warm, sunny day with a nice breeze. Other images and moments cycle through: a snowball fight during the first big snowfall during my Freshman year of college, laying on a beach in El Salvador looking up at a star-filled sky so different from the one I was used to seeing, the slow movement of the Negev desert as I walked on a silent hike, my mom waiting by the baggage claim area at O'hare airport whenever I come home. These are the images that are most potent, most powerful and most soothing. I feel so lucky to have those memories that fill me with so many positive feelings.
And in between those moments of conscious coping, I suppose I employ a hundred other coping mechanisms without realizing it. Regretfully, I use avoidance, transference, distraction and denial. Thankfully, I utilize friends, family, funny movies, good books. I hope that when I look back on this time, I will feel as though I was living with an awareness even as I let myself fall back on the coping mechanisms that are easier, but not always better.

Day Four

Things are going well. The staff and amenities are continually impressive. I just finished my third day of chemo, and so far haven't had any terrible side effects. By the numbers, I've been in the hospital for 4 days now, which, in the language of the transplant, actually means day -5 (day 0 marks the re-infusion of the stem cells). My room contains seating for 5, 2 flat screen TVs, 6 garbage cans, 2 sinks, and 2 picture windows, through which I can see a sliver of Lake Michigan and Lake Shore Drive. Thanks to those of you who've stopped by, written and called. 

Monday, January 5, 2009

The Transplant

After a considerable amount of preparation, in the form of biopsies, tests, scans, small battles with the insurance company, salvage chemotherapy, and a whole lot of emotional ups and downs, I am finally entering what I hope will be the final phase of this experience – the stem cell transplant.

The term transplant almost seems like a misnomer for what I’ll be doing and has confused a lot of you. I guess that the term seems to imply a surgical procedure to most people (including me when I first heard it) but in my case, there is no surgery involved. I will check into the hospital this coming Thursday, January 8th, if all goes as planned, and immediately begin about a week of very high dose chemotherapy that will wipeout my bone marrow and white blood cell count. Since these cells could not rebound on their own, I am then injected with 5 million of my stem cells (already collected and waiting in the trusty Northwestern Hospital freezer) which will hopefully begin producing healthy white blood cells. The remaining time in the hospital is to ensure that I stay free from infection, and that my cells graft back to my body and start working again.

I am experiencing a lot of emotions as Thursday approaches. The past couple of months have felt like the crescendo in a piece of music that has finally reached its climax with this procedure. I am afraid - more for my lack of mental preparation in dealing with three-plus weeks of complete confinement to the 15th floor of the hospital than anything else. Will the lack of fresh air make me depressed? Will it be exacerbated by constant monitoring? Will I be frustrated to be hooked up to an IV for a month or more, or will I be too tired to want to walk around anyway? I am curious about how it will feel – whether it will be painful, where it will hurt. Will my port, the line I have had placed to make infusion easier two years ago, which I’ve only ever had accessed for three days at a time, be sore during the constant access? Will I feel the stem cells working? What kind of side-effects will present most severely for me? Do I have the tools to cope? Whatever is coming, I am eager to get to it, complete it, and put this chapter of my life behind me, taking the lessons and strength I hope I’ll gain, and leaving the stress, pain and discomfort.

Though I don’t have full details, here are some relevant hospital rules as I understand them. Visiting should be permitted throughout my weeks in the hospital, and visiting hours are 24/7 on the transplant floor. It is possible that you will be asked to wear gloves and/or a mask when you come into my room because of germ transmission, but I should know that in advance based on how my immunity is. And flowers are not allowed on the floor at all. I can’t have any fresh fruits or vegetables, but otherwise, to my mom’s great relief, outside food is permitted as long as it’s not raw or improperly cooked. They should know better than to get between a Jewish mom with chicken soup, and her sick child.

**Contact information updated**

I am on the 15th floor of the Prentice Women’s Hospital. The address is: Room 1593, 250 E. Superior Street, Chicago, Illinois 60611. I have my cell phone with me, and can be reached directly in my room at 312 472 1593.

I hope you all had a wonderful New Year's Celebration - I got to celebrate with many of my closest friends, who came to Chicago to visit, which was a fabulous way to start my year!