12 – The Plateau

It has probably been six weeks since I have last sat at this keyboard to record my journey.  I thought for a while that maybe I was just coasting, that nothing different was really happening, either internally or in my daily routine.  But as each day ebbs and flows, change is in the background, however subtle and imperceptible.  In some sense I have become accustomed to the state of my life and health.  Yet an undercurrent of vague restlessness and uncertainty afflicts my every thought and action.
It is the weekend before my last scheduled treatment with CamPath.  It is rainy and windy outside, a perfect day to write my cloudy tale.  I marvel at the fact that I have gotten through these twelve weeks without a single episode of those infections which could have threatened my life.  I have come close but not actually needed a transfusion of blood or platelets.  Nor have I had any other dramatic or frankly debilitating sequelae to my disease or its treatment.
The most persistent symptoms are fatigue, shortness of breath and a neurological condition known as parathesia. This causes my skin to feel sensitive and slightly tingly.  My skin’s heat receptors seem to be always activated.  My skin feels like it would if I had spent a long time in the frigid cold, that feeling of burning as your skin begins to thaw once indoors.  It feels like a heating pad has been left in place too long. Yet when others touch my skin, it feels like a normal temperature to them.  Even here I am fortunate that the condition did not progress to something called peripheral neuropathy, a more serious condition that can involve frank numbness and interference with function such as fine motor control, being able to write or to pick small objects up.
Otherwise I have only been plagued by a persistent, slowly worsening fatigue.  This is due to the bone marrow suppressing effects of the CamPath that has induced in me a type of anemia.  Neither my muscles nor my lungs (or my brain for that matter) receive quite enough oxygen.  There are not enough red blood cells and hemoglobin molecules available to transport needed amounts of oxygen.  Consequently I feel weak, tire quickly and easily, have difficulty concentrating enough to read, look pale at times, and become short of breath after ascending a flight of stairs (significant as we live in a two-story home).
I take a growth factor called Procrit, which stimulates my bone marrow to produce more red blood cells. Their television ad features a sixtyish man who longs for the energy to shop for a “big boy bed” for his three-year old grandson.  I inject it into my abdomen every Monday.  But since I am in active treatment, the CamPath tends to counteract the therapeutic effect of the Procrit.  The result is sort of a stalemate, my hemoglobin levels barely holding the line.  Actually it has very gradually slid to a low of 8.4.  At 8.0 grams I would almost definitely have to have a transfusion.  Yesterday the clinic nurses expressed that I might need a transfusion soon, as I was so winded just walking around the clinic before treatment started. There is nothing inherently dangerous or unsafe about a transfusion outside of a small statistical risk of infectious diseases such as hepatitis or AIDS. But since I may have long-term transfusion needs, there are advantages to not having unnecessary transfusions at this point.
My white blood cell count has dipped uncomfortably low several times.  This causes me to be more susceptible to bacterial and fungal infections.  And if the cell count drops too low, we would have to interrupt my CamPath treatments.  Neither of these scenarios is particularly acceptable to me.  So I have also had three short series of another growth factor called Neupogen (G-CSF) which stimulates my marrow to produce neutraphils.  This similarly is given as an injection with a short needle into my abdomen.  But it needs to be given daily for three to four days.  So it is easier if I give it myself instead of returning to the clinic every day.  Aaron, my youngest son, has been injecting himself with insulin for the past ten years, since he was six years old.  So I am not intimidated by the prospect of self-injection.
In any case after my last dose of CamPath, my blood counts will rise and the parathesia will gradually fade.  My strength, energy and endurance will slowly increase.  At least this is what we expect.
During my first nine treatments at the clinic, the mood of the treatment room seemed somber.  My caretaker of the day, a longtime cancer nurse from my hospital, observed that no one was having fun – staff or patients. As I began to tolerate the CamPath and become more alert during my treatments, I resolved to change the mood of the clinic.  Along with our candy and camera, we brought joking and a sense of humor.  The mood was at times livelier, more congenial.  There was an older black lady who always wore a knit cap and seldom spoke with others.  We talked with her, chided her, and gave out candy.  When she discovered during my last weeks that I liked wintergreen mints, she would always come over to lay a handful of them in my lap.  She had seen me in my shakier times and told me later “Boy, was you out of it!”  She and her husband especially seemed to cherish the photograph that we took of her in her treatment chair.
I have become attached to the rituals surrounding my treatment days.  Unless I have an appointment to see Ray, I am always accompanied to the clinic by a friend – Jan, Lisa, Deb, Leon, Susan, Sally or Marie.  Tish always accompanies me when we are consulting with Ray.  Regardless of who I am with part of the new (and improved) ritual is to go out now for lunch, most often at Mexican restaurants.  This surely beats being carted home, shivering in a drugged stupor.  My son, Aaron, drove me one day and sat with me through my treatment – perhaps a courageous endeavor for a sixteen-year old.  And one day I drove myself after my scheduled caretaker called the evening before to say that she had developed a cough.  I did not want to call anyone else at the last minute.  The day proved to be a good one for me.  There was a problem with a machine in the lab and my blood had to be sent out to another lab.  Since my infusion could not be started and an IV pole did not inhibit me, I spent more time with my co-patients.
I have come to know quite a few fellow travelers.  We talk about our diseases, our chemotherapy, our counts and surgeries. We talk about our lives outside, our lives before.  Sometimes I “consult” on other clinic patients, helping to locate a viable vein for an IV, reinforcing chemo teaching, advising on the advantages of having a central IV line.  Later my fellow patients will sometimes ask me for my opinion on something medical. Underlying all of our conversations is a profound sense of empathy.
We never seem to put aside our cancer nursing instincts.  Whether it is me, Marie, Deb or Hope, we have all jumped up to assist another patient up from a treatment chair or to fetch a glass of water or can of soda from the machine down the hall.   I have helped to hold up an elderly man who became dizzy while the clinic nurse went to fetch his wheelchair. Each day now when we arrive, I pass out candy and greetings to the other patients.  Sometimes I am chatting so much that the clinic nurse has to drag me back to my chair so that she can start my IV.  I take the same chair each time, though twice another young woman claimed it as her own.  She has been in treatment since October so I acquiesced.
Photographs get taken of our favorite patients, two copies, one for my album, one for the patients.  Everyone seems grateful for these.  No one else thinks to capture these important though forgettable times – the times when we were the most sick, the most scared, the most vulnerable.  But it is part of our history, something to look back upon.
One day the clinic was very busy, not enough chairs and rooms.  Jane, a cardiac nurse with a new diagnosis of colon cancer and a neighbor of Hope, a nurse from my unit, arrived for her usual Wednesday appointment.  On this day we shared a pole and discovered that we each like Dr. Pepper.  After I finish the Dr. Pepper I said that I had to go to the bathroom and that since she was attached to the same IV pole and was a nurse anyway, that she would have to accompany me.  But she made me wait until my CamPath was in and I was no longer connected to the pole.  On this day there were four of us nurses: Hope, Jane, Marie and myself.  The staff was very busy that day, treating patients not only in the chairs but in the exam rooms as well.  As Jane and I sat getting our drugs, Hope and Marie were passing out candy, helping the other patients, including comforting an older lady who was scared and crying.  Cancer nursing, it’s not just a job, it is who we are.
Doug is another friend we met – Doug the “TV man” since he always brought a small TV.  When I first met him he told me that he had been there several times when I had my infusion reaction.  He said that he wanted to cry for me, he felt so badly for me.  Doug loved to talk, he talked with everyone.  We discovered that we had a mutual passion for boats and that we only lived a few blocks apart.  Doug is about ten years older than I am.  He has lung cancer complicated by congestive heart failure.  I plan to call him to come over when we begin to commission the Bayfield sailboat this spring after he returns from a long-awaited trip to Florida.  Sometimes we try to reward ourselves when a treatment segment has ended.  Besides Doug is not doing very well medically and he knows it.
Weeks ago, as I became aware of the other patients and began to interact with them, I noticed an older man who always came to his therapy alone.  We were talking to another couple in the waiting room.  After I went back to the treatment room, I felt a little bad that we did not acknowledge him though I thought neither did he join our conversation.  He always slept during his treatment after his premedication.  The next time I saw him, I offered candy and spoke with him a while.  We never spoke much as he seemed a quiet and shy sort of fellow.  But I always acknowledged him when he came for his treatment.  Even though he was at least ten years older, he always referred to me as “Sir”.
One day I asked to take his photograph, reclining in his chair and getting, as it turns out, his last dose of chemotherapy.  But he said that he had an appointment to see his physician the following week.  I could give him his copy of the photograph on that day. The following week he came back to the treatment area to be weighed.  We caught his attention before he entered the exam room.  I handed him his photograph.  He thanked me and said he wished me well.  After twenty minutes Dr. Markham exited the exam room, followed in a few minutes by this man.   It appeared  that he had been crying.  His face was red.  He walked straight over to my chair and took my hand and said that he had gotten good news – that they just needed to watch things now, no more treatments.  He shook my hand earnestly and told me that he hoped that someday I also would get the same good news.  I felt it a measure of honor that the very first thing he did after his momentous appointment was to share the news with me.  This level of sharing is one of the reasons that I chose and continue to be involved in cancer nursing.
I have thought for a long time that, after working for fourteen years with cancer patients, I understood them pretty well, that I had some idea of what they and their families were going through.  But now I have come to understand that my appreciation of that experience lacked an essential existential dimension.  Now when I relate to people affected by cancer, it is not only as an oncology professional but also as a fellow sufferer, someone who has been touched most deeply and profoundly by this fearful set of diseases.  There is a connection between us that unfortunately cannot be made in any other way.
I am aware that throughout these past one hundred or so days I have never stopped being a cancer nurse.  I have never stopped wanting to learn more about cancer, treatment, and research.  I have never stopped wanting to continue in what is actually a ministry of sorts.  I speak of ministry in a broadly spiritual though not religious sense.  The ministry of helping other human beings, of contributing to their welfare, of making a difference in their lives – and in doing so, affecting a profound and meaningful difference in our own lives.

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