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i Afterword to The Patient from Hell |
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Continued from the Home page... When Steve found the lump under his arm neither of us thought much about it. We were quite vigilant about my possibly getting cancer, due to my extensive family history of breast cancer, but Steve’s family history of cancer is nil. (His mother contracted lung cancer at age eighty, but it almost certainly arose from her years of heavy smoking.) As the months passed, though, we both became more and more concerned about the persistence of the lump. On the day of Steve’s first biopsy we knew there was trouble when the doctors discovered more lumps than the one we knew about. At that very moment I took on a new role in life— supporter and caregiver to the man who is my best friend and whom I love more than words can express. My new role began in earnest when we got the results of the biopsy. As Steve explained in his story, he got the news in the Baltimore airport. I had already boarded our plane and was getting settled for a cross-country flight. Then Steve arrived. One glimpse told me our lives had just taken a horrible turn. He was pale, every muscle was tense and when he looked into my eyes, his fear made our love for each other even more meaningful. After getting his luggage stored and buckling up in the seat next to me, Steve explained that his doctor just told him he had non-Hodgkin’s lymphoma but the particular type was not known yet. At that point the type did not matter. What mattered was being together. My role of care-giving began in the form of quiet loving support. I took Steve’s hands into mine and said very calmly, “We can fight this together. You are strong and we are a formidable pair. We can do this together.” During what seemed to be the longest flight in the history of aviation we both held onto each other for dear life. I followed Steve’s lead. If he wanted to talk, I’d listen and respond. If he sat quietly, I just held him. Somewhere along the way I did cry, both with Steve and alone. The next day I bought a large spiral notebook with five sections: one for notes taken when talking with doctors, one for recording medications, doses and dates given, one for questions Steve or I thought about between doctor visits, one for notes taken from the internet and other sources, and one for anything else that needed to be recorded. That same day, armed with my notebook and pen, I walked hand-in-hand with Steve into Oncology Day Care. Waiting in an exam room for your first oncological visit is pure torture. I came prepared with many stories, questions and information to use to help distract Steve, but it was not very effective. Finally, the oncology Fellow knocked and entered. I simultaneously whipped out my notebook and pen. I began writing notes at high speed; I didn’t want to miss a thing. I kept wishing I’d taken a tape recorder. I suspended my emotions as well as I could in order to get all the information coming from the Fellow and later from the oncologist, Sandra Horning. There were two exceptions when my emotions just came flying out unchecked and uncontrollable. The first was when we were told Steve had mantle cell lymphoma. The actual diagnoses meant nothing to me at the time, but the way the Fellow said “you have mantle cell lymphoma” sent an ice pick through my heart. Obviously, his tone said this was not one of the “easy-to-fight” lymphomas. I needed a moment to think and become composed, but the Fellow kept talking. My job as note taker didn’t allow me the luxury of focusing on my feelings. I must have done a good job of suspending my emotions because I took copious notes. Looking back on that appointment, I only remember hearing the Fellow give us of Steve’s diagnosis and Sandra Horning’s initial words about treatments. But somehow, I managed to take pages and pages of notes, full of explicit details about everything that occurred during the meeting. At that first meeting, I repeated a plea over and over again in my head: “Please don’t recommend a bone-marrow transplant as part of his treatment!” While on the faculty at the University of Michigan, I had a student in one of my classes who underwent two such transplants. We had talked about his experiences, because I sensed he wanted someone who cared to talk about those tough times in his life. He explained how physically and emotionally draining the transplants were for him, but he was thankful nonetheless, because the procedures had saved his life, making it possible for him to return to school and a normal life. My mental plea did no good whatsoever. Sandra shattered my hopes by explaining Steve would need an autologous stem cell replacement (a.k.a., bone marrow transplant). Another ice pick went into my heart. Next we learned that Steve needed to have a bone marrow biopsy, right then and there. The rudimentary aspects of what was to be done were explained to both of us, but neither of us was prepared for this truly awful and painful procedure. With Steve stretched out on the examining table, lying on his stomach, I stood by his side holding his hand. Steve was facing me, but I was facing the Fellow and watching him assemble the instruments. I remember thinking, “It looks as though the mental torture Steve just endured is going to be matched by the physical torture to be inflicted by those instruments.” I was almost right. He was given lidocaine at the location of the puncture, but that was not sufficient to stop the pain. When the instrument punched through Steve’s bone with a thud, I felt a vice-like grip on my hand. Simultaneously, I became very light headed, which had never happened to me before. Being the caregiver and not the care-receiver, I told myself I could not faint. I had to find some way to get my head closer to the floor while providing the much-needed comfort to Steve. I squatted down so that I could look directly into Steve’s eyes, all the while keeping up a conversation that I was hoping was helping to distract us both from the torture. The fright in Steve’s eyes drove away all my light-headedness in a second—and the squatting certainly helped some too. During the appointment Sandra told us not to look up mantle cell lymphoma on the Web, because under the old protocols—the ones we’d primarily find on the Web—the average life expectancy was two to three years. Under the new protocol of CHOP plus Rituxan, all of Sandra’s patients were still alive after four years. As we walked to the car after this first meeting, Steve and I agreed that he would not use the Web to learn about his lymphoma. I was the designated Web searcher and would pass on needed information to him. This rule turned out to be a good one because it has prevented Steve from under going a lot of unneeded anxiety. This rule, however, has caused me to endure some lonely suffering, which at times has been quite difficult. Thank heavens for friends and the caregivers support group! Our friends and families became my anchors. All those in our situation will find help in their own way, but let me give you three examples that were very important to me. First, our longtime friend and colleague at Stanford, Paul Ehrlich, came to the hospital every day to visit Steve in the clean room and see how both of us were doing. This required that he scrub his hands and forearms for three minutes straight, and then put on a gown and a mask. Before he left each day, Paul was always sure to give me a big hug and to remind me that I needed to take care of myself. After each of his visits, Paul e-mailed a progress report to a group of our mutual friends, who in turn forwarded the e-mail to other friends of Steve’s. In this way, a large network of people was able to keep track of Steve’s progress without my lifting a finger. Perhaps my greatest anchor was my brother, Bryan, who is as busy or busier than the rest of us, because he is the owner of a small high-tech company. When Steve was diagnosed with mantle cell lymphoma, Bryan told me that if I needed him at any time he would get on a plane and be there. I did not think I would take him up on his offer, but when Steve was at his worst—needing a lot of morphine and anti-fungal medicine to prevent infections—I called Bryan. He arrived the next day. He saw how tired I was and made me promise to call him if I was not going to be able to get home by 2:00a.m. Between midnight and 1:00 Steve started shaking uncontrollably due to the anti-fungal medication. Once they stopped the medication, Steve was able to stop shaking. After Steve was sleeping again, I called Bryan. The next thing I knew he was outside Steve’s room scrubbing and donning a gown and mask. Bryan told me to go home and sleep, and he would promise to stay with Steve until I came back the next morning. I was so very touched by my brother’s love and caring that I cried myself to sleep that night. My friends were the other source of care giving to me, which all caregivers need. Before Steve went into the hospital there were times when he was at home needing a lot of my attention. My wonderful friends Liz Hadley and Angela Riccelli, knew these were tough times for me, and I had little time to cook. Inevitably on the days that were particularly difficult one or the other of them would arrive near dinnertime with an entire home-cooked dinner ready to eat. Besides providing nutritious and wonderfully delicious meals, they were supplying me with the love and support that I needed to be strong for Steve. Then the day arrived for Steve to check into the hospital. That first day was difficult; we had to get use to Steve not only being in the hospital, but being in the clean room. I stayed at the hospital quite late—later than I wanted because I had locked my keys in the car, which shows how preoccupied I was that morning. When I finally arrived home, waiting for me on the porch was a beautiful flower arrangement from two friends, Gretchen Daily and Gideon Yoffe. I put the flowers in our bedroom where I would see them first thing in the morning and last thing at night. I am very lucky to have such caring and supportive friends and family. My job would have been almost impossible without such an outpouring of love. Like many others, I also got a lot of help from the hospital-arranged caregivers support group. The meetings, attended mostly by spouses of stem-cell-replacement patients, provided a very welcome framework that allowed me to reveal my anxiety, anger, joy, exhaustion, and ever-present fear. At the first meeting I attended, the other caregivers and I shared some laughs and many tears. I quickly developed a mutual trust with those present, some of whom became close friends. For most, if not all, of us, the probability that any of our spouses would die was much, much higher than it had ever been before. We were all doing everything we could to wrestle that probability down as low as possible, but life and death were now so closely intertwined that we had to accept a new reality. As Steve explains in the preceding pages, he is proud of the fact that he was able to undertake many of his normal day-to-day tasks throughout most of his treatment. He is proud of the fact that he was able to conduct as much business from his hospital bed as he did. As part of my “job,” however, I tried to get him to rest enough to allow his body to heal. For any caregiver, this task can be quite challenging. Additionally, I was concerned that his being “captive” in the hospital was going to drive him crazy, especially because Steve is such a “people person.” Being the caregiver, I felt it was my job to distract him so his captive feelings were minimal. With this in mind, I hatched four plans. The first was to take to the hospital all the pictures we had ever taken, sort them into trips or years, and put them into photo albums. The doctors and nurses could not believe the number of pictures I brought in, but I had to be armed with fun memories to help Steve (and me) get through what turned out to be some pretty tough times. When Steve was sleeping I would quietly put photos in the albums. When he was awake, I would pull out pictures and we would talk about all the memories that surfaced. My second plan was to reinforce Steve’s understanding of all the people who truly care about him. To do this I got a huge piece of butcher paper and wrote in big letters, “STEVE, YOU ARE IN OUR THOUGHTS!” I put it up on the wall of the clean room so Steve could see it from his bed. Then when someone would call, come by, send an email or card, or pass along their good wishes via another friend, I put their name on the sign. By the end of his stay the sign was completely covered with names. It really helped to raise both Steve’s and my spirits.
The third plan
gave us a focus several years beyond the hospital and cancer. Together, we began
organizing a large scientific symposium to be held in conjunction with Steve’s
sixtieth birthday. Steve is a world-renowned scientist who has had a lot of
influence on many scientists, policy makers, business people, and the general
public. His fifty-seventh birthday was just a couple of weeks after he got out
of the hospital. Planning a big event that would take place three years into the
future gave us something fun and important to look forward to. We enjoyed
putting together a preliminary agenda for the symposium, and coming up with a
guest list. I must admit that I was concerned about the possibility of having a
memorial symposium. Thankfully, Steve was there to attend the three-day
symposium, which was held in February 2005. It was a wonderful success and a
fabulous celebration of Steve’s life. All the speakers attested to Steve’s
important influence in their lives and on their careers—a legacy that will be
enduring through time. One of the most poignant comments was the private
confession from one of the few journalists there that he was thrilled to have
been deprived of the need of doing an obituary for Steve had he not survived the
hospital procedures. Steve joked he was flattered when he found out who was
going to do that deed, but that he intended to continue to deprive him of it
until after the reporter retires. Even when he was at his lowest point—when the radiation damage and the effects of having no stem cells were the worst—Steve remembered my birthday and even managed to arrange a surprise party. Every day, I got to the hospital no later than 9:00a.m. and never left before 11:00p.m. I was reluctant to change that schedule, even on my birthday, but Steve finally convinced me to leave the hospital early to go to dinner with Angela Riccceli and her husband, Larry Goulder. I drove straight from the hospital to their house, and we walked to a nearby restaurant. I was so preoccupied that it was not until I was literally standing behind my chair at the table that I realized there were already people sitting at the table. All of them were close friends who wanted to help me celebrate my birthday. I was overwhelmed. The love that those friends and others have for both Steve and me continue to make our coping with cancer bearable. This cancer adventure has pushed Steve and me to physical and emotional extremes, both positive and negative. My journey, like those of many spouses and caregivers, started with numbness and evolved into a protecting, supporting, and information-gathering state. From there, I found myself feeling angry because if Steve were to die, I was the one who would be left without the person who means the most to me in my life. Finally, after a while, I was able to step back and be grateful for the outpouring of support and love Steve and I received—and continue to receive—from our friends and family. Their wonderful support, caring and love made me realize how very lucky Steve and I are and important they are to us. So now I need to revise the first paragraph of this Afterword. Dealing with cancer is indeed like being blindfolded and put on different rides, but now I know that these rides have safety mechanisms. They are the many people standing close by waiting to provide the love and caring needed to help buffer the difficult times and celebrate the pleasures with us as we travel a journey we never wanted to take. |
info@patientfromhell.org
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