15 – Reprieve

We arrived home in plenty of time to pick up Aaron at the airport.  He had been awake over twenty-four hours traveling home from Moscow.  He slept in late.  I did not.  I had a stack of mail, hundreds of emails, and a dozen phone messages.  There was plenty to do over the next few days.  Not the least of which was to start putting away the detritus of our trip that had filled up both the trunk and back seat of the car.  These included a box of boat supplies, eighty feet of one inch rope fallen off a ship and washed up on shore (probably during a storm as I found it half-buried high above the normal high tide line), a box of driftwood, sea shells, hermit crab shells, sponges and other beachcombing discoveries, a box of new used books, a box and garbage bag of items gleaned from my grandmother’s kitchen and personal items from her home in Florida, packed away for the past two years at a storage shed in South Carolina.  And this in addition to the items we left home with.
So I kept busy over the four days.  Tish had four tickets for a sneak preview on Friday night.  Both of the boys went.  Ben picked Aaron and myself up, driving us in his new car to meet Tish downtown.  We all ate in the food court of the downtown mall.  At the theater Tish thought that a woman in the row in front of us looked familiar.  It turned out to be Apra from Dr. Markham’s office.  Small world.  On Saturday we went to a friend’s birthday party.  I am usually shy at such parties.  I would have been at this one also, but spent the evening talking to someone I know, teaching about the intricacies of my leukemia and its potential treatments.  Sometimes I feel that all my conversations are about my disease.  And without it I would have very few interactions.
Tish and I went to Sunday Mass as there is a healing of the sick service on the first Sunday of the month.  Tish returned to work Thursday and Friday but was home for the weekend. Tish thought that I was getting a bit edgy, even grouchy at times.  I was aware that I was anxious to proceed once again, to get down to the business of dealing with my leukemia.
Monday morning, April 8, finally came.  I had called the doctor’s office on Friday to inquire if I was scheduled for labs.  I was told there were no labs ordered and that Dr. Markham did not typically order labs for a bone marrow biopsy.  I suggested politely that Ray was out of town when I made the appointment and that we needed to monitor my blood count at the very least.  They said that they would call him but cautioned that it would be late in the day.  Later they called to say that indeed Dr. Markham had added a number of labs: complete blood count, serum creatinine, liver function tests and LDH.
After the labs Tish and I went to sit in the waiting area, but Donna the Peach soon took us back to the “bone marrow room”.  Ray did a quick interview and exam. Then I lay prone on the exam table.  Donna, who had wanted to help me in the bathroom months earlier, was there to assist.  Ray asked Tish if she planned to stay in the room.  He agreed that she could stay but only if she did not get up from the chair during the procedure.
The lidocaine stung as it always does.  I tell every physician now about adding sodium bicarb solution to the lidocaine to reduce the stinging effect.  I was not particularly anxious about the procedure.  I myself had assisted with hundreds of them. Throughout most of the biopsy I was only aware of dull pressure sensations.  The first real pang of pain that patients feel is when the physician pulls back quickly on the large syringe in order to draw out the marrow.   Ray warned me as he was ready to aspirate but I felt almost nothing. I heard him ask Donna for another syringe which signaled some small technical problem.  He did not get much marrow he explained which is why I felt nothing.   I knew that his next attempt was more successful because the short but sharp pain arrived as promised.
Having my doctor as a captive audience, I talked and asked questions throughout – not to distract myself, but because of the real though ironic social aspects of the situation.  The last part of the procedure involves withdrawing the long aspiration needle – this is when I was aware of blood dripping down my side – and replacing it with a hollow needle about the size of a large nail.  This device has a T-shaped plastic handle that gives the clinician leverage to torque and twist the sharpened point down through the hard surface of the bone into the more porous marrow itself.  As the needle found its way home, the pain returned sharper still.  The clinician withdraws the needle, holds it over the solution-containing cylinder the nurse is holding, then with a thin rod pushes the core of marrow out the hollow end.  Ray described this specimen as “spectacular” which indeed it was, measuring nearly an inch in length.  A dressing to the puncture site and I am instructed to lie quietly on my back for fifteen minutes in order to apply pressure to stop any further bleeding.  Before she leaves the room, Donna squeezes my hand and assures me that the results of the biopsy will be good.
My counts have come back by the time I am ready to leave.  Ray returns to the room to tell me that my hemoglobin is 7.9, below the arbitrary level of 8.0 at which transfusions are typically ordered.  I agree with Ray that the Procrit is not producing stellar results.  I have been off treatment for nearly a month and have taken a Procrit injection each Monday since.  While arrangements are being made for my transfusions, I go to the treatment area to be weighed.  We see several patients that I know including my candy lady with the knit cap and talk with them.  I talk with Brenda, the other clinic nurse.  Donna tells me news of Susan’s husband who has been in ill health.

It is Marie who will draw the transfusion duty.  I call her when we return home to report on the day’s events.  She says that I sound better, that my mood seems uplifted.  I reflect that I feel that we are on track once again, that we are actively doing something.  She picks me up at 8:30 the next morning and we drive to Methodist Hospital and report to the blood bank clinic.  There are five beds, one reclining treatment chair, and a pheresis machine at the far end.  Each bed has an over-the-bed table, and each table has a chart on it.  I find my name and stand by my bed.  Nurse Phyllis comes out to greet us.  She tells us that the procedure will take three to four hours, something we are already aware of.  We nod in affirmation.  Then Nurse Phyllis tells us that there can be no visitors and that Marie will have to wait in the Radiation Department waiting room.  I ask if this is a hospital rule.  Nurse Phyllis replies that it is her rule.

I try to read some of the stem cell transplant literature I brought with me.  It is hard to concentrate.  I talk with Phyllis and the other patients.  The blood bank manager comes through.  He is well acquainted with the blood bank manager of my hospital.  He is a very friendly and knowledgeable guy.  I imagine to myself that he would allow visitors.  Marie returns sometime later, having been given permission by Phyllis to “check back” periodically.  I ask her to buy me a Pepsi.  Then I ask Phyllis where the nearest vending machine is.  When Phyllis determines that it is I and not Marie that requires a Pepsi, she gives me one from the clinic refrigerator.
Marie returns again, this time near lunch.  I have been talking to the woman in the bed next to mine. She has been waiting for several hours for her transfusion to begin.  I try to explain to her why her body has developed antibodies that require more careful screening of the blood she is to receive.  I explain to her, as have Phyllis and the manager, that this has nothing to do with her recent lung infection.  After multiple previous transfusions, these new antibodies will remain an issue whenever she needs further blood transfusions.  I learn that she has just left the same rehab hospital that my mother was in.  She finally seems satisfied with my explanation about the antibodies.  Lunch arrives and Marie remains, as does the husband of the woman on my other side, a long-time renal patient. We talk with them also.  Four of the beds are occupied.  I am on my second unit of what is called leukocyte reduced, packed red blood cells.  I have been joking with Phyllis throughout, building a rapport with her.  The room seems quiet and everything under control.   Phyllis is sitting at her desk, doing charting when she announces “Visiting hours are over!”
I want to explain to you that we do not have rules about visitors in the daybed area of our unit where we give blood transfusions and infusions of chemo and IV-IG.  On the contrary we regard it as a healthy situation when patients can have a familiar hand to hold, a familiar person to talk to, help in getting to the bathroom during the sometimes stressful, sometimes scary process of having IV’s started and getting transfusions and infusions that patients sometimes have dramatic reactions to.  So we find Phyllis’ rule in general, and her sudden pronouncement in particular, to be difficult to justify.  Sometimes nurses are made nervous by other people when they start IVs.  And with six beds it is conceivable that the noise and confusion level might be distracting to the nurse.
I still felt groggy as we walked to our car.  I had felt suddenly tired and had fallen asleep.  The weather has gotten cooler and windier. The remainder of the afternoon is dark and quiet.  When Tish arrives home from work, the curious events of the day are relayed to her.
Wednesday, April 10, was my appointment with Luke Ackard, a transplant specialist with whom I used to work and with whom Ray had informally consulted back in December.  My insurance plan, though not my specific “network”, covered Luke’s practice.  The consultation fee was close to $260.  But Luke was seeing me as a courtesy. Tish and I arrived at the hospital.  I filled out the papers while Tish parks the car. I received my tote bag of patient materials.  The nurse took my vital signs, then asked the name of my disease.  Luke did not appear immediately (does any physician?).  But when he did he offered that when the consult was arranged he thought that I just had B-cell CLL.  Now he had just learned from the nurse that I had the rarer, more sinister T-cell prolymphocytic leukemia.
We started by reviewing my unremarkable past medical history and the events and symptoms that led up to my diagnosis and finally to this consult.  He performed a brief physical exam, noting just the tip of my spleen on deep breath.  Then he reached for a small tape recorder and started his analysis of my situation.  He prefaced the discussion by observing that I sat in a very difficult chair.  There would be offered no strong or compelling data to support any recommendation that he might make. My disease was too rare, some of the techniques and procedures too new to enable him to point me securely in any treatment direction.
Luke then elaborated on generic discussions regarding autologous stem cell and bone marrow transplants, allogeneic stem cell and bone marrow transplants as well as the newer mini– or non-myeloablative or reduced-intensity allogeneic transplant procedures. The latter is what Ray had mentioned and what I had been researching.  My hope and the hope of researchers and patients everywhere depends upon the success of a phenomenon known as graft versus leukemia or graft versus tumor effect. This means that after the donor’s stem cells engraft and populate the cancer patient’s marrow, these new immune system cells will recognize the patient’s cancer cells as foreign and attack and destroy them.  This effect can only occur in allogeneic procedures, where the donor is another person.
On the other side of the balance exists graft versus host disease (GVHD).  In this situation the donor cells recognize the host cells as foreign and begin their attack on healthy cells in the cancer patient.  GVHD can occur in different degrees of severity, from mild to life threatening.  It affects major organ systems.  And there is no accurate way of predicting a given patient’s response to transplant.  Luke told us that 10% – 40% of transplant patients die in the first year.  A patient with an auto-transplant (self) will be relatively safe from the deleterious procedure effects after 100 days. A patient receiving an allogeneic transplant is not safe from acute GVHD for six months to a year.  In addition he is at risk for chronic GVHD for years to come, remaining on powerful immunosuppressants and antibiotics for extended periods.
Efforts at developing techniques to reduce GVHD, such as T-cell depletion of donor cells, also seems to result in reduction of the graft v leukemia effect and the time to relapse or disease progression.  Likewise the reduced intensity procedure decreases some of the dangers of the more aggressive ablative conditioning regimens while increasing the risk for other complications further on in treatment.  And, especially in the case of my T-PLL disease, there is not only no way of accurately predicting whether I will experience a “cure” but also no way of predicting whether or not I would survive the transplant procedure.
So, as Luke said at the beginning, I sit in a very difficult seat.  I can see if I am in a state of remission with CamPath, hoping that my cells would respond to CamPath a second time when I relapsed.  Once my strength and stamina regained I could live a fairly normal life for four to forty-eight months or so.  Then the disease would return.  I might or might not achieve a second, though invariably shorter period of remission with additional CamPath or with any of a handful of other chemo drugs that have a sporadic, uncertain history of success with this disease.  Luke and I joked uneasily about the fact that the few articles on T-PLL always begin with the words “rare”, “aggressive”, and “invariably fatal”.
So Luke was reluctant to provide any strong recommendation at the end of our talk.  He allowed that I might seek a consultation with a research physician at M.D. Anderson Cancer Center in Houston who seems to be this country’s expert on T-PLL.  The principle investigator for T-PLL at Marsden Hospital in London has responded to some questions of mine via e-mail.  Luke also said that he and his physician partners would discuss my case next week.  He would call and inform me if there were any notable ideas stemming from that meeting.  He ended the tape.  We had spent easily over two hours with Luke.
The big news of the day came at 4:45 that Wednesday.  Ray’s office called and said that he wanted to speak with me.  He came on the line and said that preliminary results from my biopsy indicated a normal marrow without disease.  Some finer studies were still pending but he was hopeful.  He was scheduling a PET scan for April 24.  My official transplant consult at Indiana University Cancer Center was April 25.  I would see Ray again on May 1.  He was quite interested in hearing about my consult with Luke.  I have a brief synopsis and told him that an official consultation note would be sent to him. Tish was excited to hear the news.  No one had really expected results before Thursday.  And I had not allowed myself to imagine a scenario in which Ray would have good news to tell me.
That evening  I went to a dinner lecture about chemo-induced neutrapenia.  I stopped to talk with the speaker, Linda Battiato, a nurse practitioner whom I have known for years, as she was setting up the projector.  I told her that I had used her company’s product, Neupogen, when I was neutrapenic during my illness (my Monday WBC was only 1.2 so I was still technically neutrapenic).  Linda had not heard about me so I explained my diagnosis of T-PLL and subsequent treatment with CamPath.
She gave me a surprised look and asked if I had seen Luke Ackard this morning.  I gave her surprised look and said yes.  She said that she had given a luncheon lecture to the transplant staff on Luke’s unit at St. Francis.  As he was eating lunch, she asked him how he was doing.  He told her that he had just finished an emotionally difficult consult with an oncology nurse that he used to work with.  He told her that it was particularly tough, trying to advise a person with a terrible disease that you already knew.  How we can affect people in ways that we don’t even imagine.
The dinner was nice.  Open bar, an appetizer table which included shrimp cocktail, salad (I requested soup, being neutrapenic), and a choice of filet mignon, salmon or chicken as entrees. Wine with dinner, crème brulee for dessert.  I also tried a special drink called “Sex in a Glass”.  I told my former manager, Jan, who was seated next to me, that I was liable to accept anything interesting that was offered to me now (skydiving?).  I was definitely in the ‘dessert stage’ of my life.  That night I saw a number of nurses who I had not seen since my diagnosis.  We had brought the camera and took plenty of photographs.  We thanked our hosts and were the last persons to leave.

The next morning I uncovered the Bayfield that had been under wraps for eighteen months.  I brought out the power washer and blasted dirt and old paint off the deck and hull.  I was soaked myself and covered with debris so I had to change clothing.  It was an extraordinary day – sunny and 78 degrees, the warmest day of the year so far.  I got out the assortment of power sanders and started sanding the teak cockpit grating.  When Aaron came home from school, we  hoisted the heavy, cumbersome twenty-eight foot mast to the ground.  I put Aaron to work.  I rested occasionally but mostly puttered about the boat, dreaming of getting it ready for the water, then spending days taking all of my friends out for autumn sails.
Aaron went across the street to a friend’s house.  Tish had to work late, catching up on work that no doubt piled up while she was with me at my doctor appointments on Monday and Wednesday.  I was alone.  Later I would feel fatigued and realize that my muscles were sore.  It was good sensation though, healthy discomfort rather than pathological pain, something that normal people feel when they have worked too hard. It had been a wonderful day – a gentle and beneficent reprieve. Today had seen the end of one set of anxieties and the beginning of others.  I still felt positive because we had begun moving again.  We had done something of significance each day of the week – the biopsy, the transfusion, the consult, the boat.  I suppose I was experiencing something of the capacity of Spring to bring forth a sense of hope and rebirth.  Next week I would go to Washington, DC for my profession’s major annual Congress.  After that I would have another few weeks to work on the boat, all, I imagined, under an eternally blue and temperate sky.
But Friday, the day on which I wrote this last chapter, saw showers and thundershowers.  I kept busy inside, knowing that the weekend forecast would allow me time to work on the boat.  But periodically throughout the day, as I glanced over my shoulder at the wet grayness outside, the weather seemed to chide me.  It brought my dreaming back to reality.  I was reminded of the difficult times and impossible decisions which still lay before me.  But tomorrow always comes soon enough.  And my task, now more than ever before, was to make each and every of my todays as full and complete as I could.  My todays, all our days, however measured, do not seem to be in abundance.

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