13 – Treatment’s End

My last week is filled with mixed emotions.  My treatments have defined and structured these last three months.  What will I do now? Donna the Peach is working at Big Eagle clinic that week.  I think back on how difficult the treatments were for me the first month, the violent rigors and the subsequent stupor. For the past eight weeks things were routine, predictable.  There was only one instance, when the CamPath was inadvertently set at too high a rate, that I felt the familiar sensation in my chest.  This time it progressed only to an increased shortness of breath changing to hyperventilation.  We turned off the infusion for thirty minutes and only ran the normal saline.  The reaction subsided without the need for medication.
My appointment to see Ray Markham was on the Wednesday before my last treatment. Tish took me on this day as she does whenever I have an appointment to speak with the doctor.  My appointment was not until the afternoon so we went out to eat Mexican and do a bit of shopping.  I had imagined that by the end of next week we would have results from both my biopsy and my PET scan.  I had imagined that Tish and I would leave on our twelve-day holiday with a sense of what I was and where I was going.
During this appointment Ray was generally optimistic, saying that my spleen was still about the same size, though certainly markedly reduced from presentation.  He said that we would not do the bone marrow biopsy for several weeks. With our planned holiday this would mean more than a month before we did the biopsy, more than a month without knowing, a long month wondering if I am in remission or not.  I was not prepared for this.  He offered that I could have the biopsy done a few days before we left town. That would mean that biopsy results would be available earlier, but still when I was out of town.  Could I resist calling for the results?  Would I even want the results in the midst of my relaxation?  He left it up to me to decide.
On this day Ray also mentioned traditional chemotherapy as an option in the event that I was not in remission.  Chemo has always been an option, I suppose.  But my doctor has never mentioned it as an alternative until now.  Then he seemed to relegate the stem cell transplant option to only one of several options open to us, pending results of the biopsy, pending the answer of remission or a continuation of my disease.  Not being in remission implies that the treatment has not worked.  Even though we know that I am in at least partial remission – my spleen has shrunken and my lymphocyte count is suppressed – not being in complete remission is a big deal, emotionally as well as medically.
I fretted over the next four days, finally resolving to ask for the biopsy to be done the day before we left for our holiday.  That way I would have the results as soon as I returned.  On Monday I was prepared to relay my decision as well as to ask a few more questions.  When I brought this up, I was told that Ray was on a skiing vacation.  And when I tried to make an appointment for the week before our own departure, I discovered that he had no openings.  The front office staff said that they might ask him when he returned if he wanted to work me in. But I pouted and acquiesced to accept the next available appointment, April 8.  Tish would meet us later for a celebration lunch.  My sister, Barbarann, accompanied Tish to the clinic in late morning.  My mother had had a hip replacement the week previously and was convalescing in a rehab hospital a few blocks from the cancer clinic.  By the time they arrived, Donna told Tish that I was not myself, having been upset that my doctor was not available to me.  I had my share of grouchy or depressed days when I could not or would not muster my usual deliberate good cheer.  The nurses read my moods.
I knew that the next month would be a long one.  I worried that I would have difficulty enjoying my holiday.  By the following Monday, however, I seemed to be adjusting to the uncertainty of my condition.  I told the people in the lab that I would not be back for a while. Everyone wished me well.  My hemoglobin was still down at 8.4 so I received a Procrit injection.  I had the nurse remind Ray that we would be away on holiday for the next two Mondays.  And even though my white cells were at their lowest point ever – 0.9 – Ray decided that I did not need Neupogen this time.  This would leave me, departing on holiday, very vulnerable for infection.  The first sign of infection, even a fever, would send me to the emergency department of the nearest hospital.  This communication took place with a nurse as intermediary.  And this communication, like all communication taking place through a third party, seemed less than satisfying.
I left the office with two syringes and two vials of Procrit.  The nurses expressed hopes that I would find my ten days at Tybee Island to be a relaxing respite from the rigors of cancer treatment. Donna hugged me as I left and gave me her home phone number in case I ever needed anything (writing her number, as nurses are want to do, on the closest thing at hand, the ever present alcohol wipe package).
What will I do now?  Treatment was deeply woven into the fabric of these last three months.  I was partially defined by my status as an active cancer patient.  Who would I be without the need for trice weekly clinic visits?  Not a nurse.  Not a patient.  A normal person?  (What is a normal person?  For me the answer is simple – a normal person is one without disease.)  So not a normal person.  I still have leukemia.  I am aware of that fact every hour of every day.  So where is a person with leukemia who is not in active treatment and who does not know the status of his disease?  I am in limbo.  And it is something that I need to deal with though it seems at this point to be harder than being a patient.  Limbo.


Comment from heidi kuss
Time February 1, 2014 at 6:03 pm

I am German and I live near Freiburg in Germany. My brother Egon was diagnosed with T-PLL last year in February. His life in the last month was characterized by constant visits to the doctors in an off the clinic receiving chemo, taking hudge amounts of pills etc. Finally last Thursday his bone marrow transplant was conducted at the University Clinic in Freiburg. I visited him last on Saturday 25th. He was in good condition even though under chemo treatment an knowing that it still had to increase 3 times more till Wednesday in order to be ready for transplant. But already on Tuesday he was rushed to the intensive care unit and put under constant observation. He was put under artifical respiration and transferred to a light anesthesia. But nevertheless the transplant occured on Thursday. Today I visited him again, his condition is very critcal. I still hope that he will make it. The female doc. I was talking too said if they take him of the maschines he will not make it by himself. I am very confused at the moment and dont know what to make of it. Thanks for listenning. Heidi
I read some of your journey, thanks for letting us know what happened to you !!

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