05 – Days in Hell

The trouble with being a nurse, especially an oncology nurse, and most especially an inpatient oncology nurse with a new diagnosis of a hematological malignancy is that we know too much, and we know too little.  What we don’t know already, we know how to discover – from journals, in texts, on the Internet, from physician and nurse colleagues.  Cancer, pain, courage, despair, dignity, all manner of suffering have come to form the collage of our day-to-day reality.  Both the Blessed and the Profane come together to form our professional gestalt.  We can imagine all of the horrible possibilities, all of the potential sequelae, one complication leading to another, and all leading to that terminal event, inescapable for all of us, but much more real and palpable to the person with cancer.  Will death come early for me?  How early?

I have not written for two and a half weeks.  It was too painful, too raw.  My energy is limited.  It needed to be diverted to other things now – getting through the first weekend after the diagnosis, getting through hospitalization and first three days of treatment, focusing my energy on enjoying my family and this favorite family holiday. What will this Christmas be like?  Will this be my last Christmas?

But it is time to return to this task of recording, of making public this history of my illness.  It is good for me to write and for others to read.  So I return to my narrative.

My surgeon said on Monday that if I have not heard from him by Wednesday noon, that I should call his office.  Over the past few days I have heard from friends and family – words of encouragement, tales of acquaintances who have survived lymphoma and were three, five, ten years out.  Ten years is not so bad, not quite retirement age, but time enough to accomplish a lot of things – continue to work on international projects, complete longstanding improvements to our eighty year old house, time enough even to resurrect some of the old boats that crowd my garage, er, my boathouse.  Ten years is not so bad.  And there is plenty of time to get used to the idea of that specific mortality.

Wednesday noon comes and goes.  I am strangely not that anxious now to know the news.  I am in the living room relaxing to music though every time the phone rings, the adrenaline pulses.  Finally about 2:30 and at Tish’s urging, I telephone. The receptionist answers, says that my doctor is not in, and that she has seen no pathology results and probably will not get them until Thursday or Friday.  Pathologists!  This is a familiar story for me as a nurse.  Patients waiting for biopsy results, waiting to find out what type of cancer they have or if they are now in remission or not.  But there is a new urgency to this familiarity.

Thursday is another in a series of long days.  I call the surgeon’s office around noon to check – nothing yet.  I have some work to do at the computer but try to stay off the Internet in order to keep the shared line clear.  I keep the portable phone next to me.  Finally around 3:15 the phone rings.  It is Larry Micon.  He asks about my incision and I tell him that it is fine, that he is an artist with a knife.  He says that he has the results.  He tells me that biopsy reveals that I have T-cell leukemia.  This throws me off a bit – T-cell leukemia?  what’s that? I know about acute leukemias, ALL and AML with all their subtypes. I know about chronic leukemias – CLL, CML, hairy cell, mantle cell, but T-cell?  I am at a loss of what to ask.  I had my 2400 page textbook open to the table outlining the various types of lymphoma.  Leukemia is an entirely different thing – scarier in my mind.  I ask how reliable, how definitive are these biopsy results. He says that they are quite reliable.  He says that both my oncologist and my primary physician will be receiving the results.  He suggests that I call my oncologist today.

I quickly flip my textbook to the index.  One section talks vaguely about T-cells in relation to acute leukemia – prognosis two years is what catches my eye.  Not quite ten years, not at all.  I quickly call the oncology office.  It is only 3:30 on Thursday afternoon but I get the answering service nonetheless.  The girl tells me that this is the afternoon of the staff Christmas party and the office is closed.  My mind panics.  She then says that if this is an emergency, she can page him.  Well, yes, my surgeon did instruct me to call Dr. Markham today.  Page him please.

This is the longest hour yet. Tish is at work.  It is dark and cloudy outside.  I pour through a few more books without much success.  Then I remember that our third differential diagnosis was CLL.  That is easy to find.  And it does mention T-cell disease as representing only 5% of CLL cases.  The other 95% are the much more common B-cell variant. This does not sound too bad.  B-cell can be slow growing, indolent, almost subclinical in expression of symptoms.  Many times it does not even require immediate treatment.  Yeah, but mine is T-cell and pro-lymphocytic at that!  What does that mean? Nothing in all of my many texts reveals anything further.

It has been an hour since I talked with the answering service. I am ready to call the service again when the phone rings. Ray apologizes for the delay.  He is calling from the Christmas party.  He says that he knows the biopsy results and has a treatment plan in mind, a drug called CamPath.  He wants to meet with us tomorrow afternoon.  He also explains that my disease is properly called T-cell prolymphocytic leukemia or T-PLL.

Hanging up, I almost immediately call an oncologist friend, Hemachandra Venkatesh on his cell phone. ( I am the only person at our hospital to have visited his home town of Bangalore in India, and his mentor in lymphoma at the National Cancer Institute also volunteers for the International Union Against Cancer (UICC) as do I.  Yes, he affirms that this disease is treatable with CamPath and that I might return to a normal life. But I imagine hesitancy in his message of hopefulness.  Armed with new search word “prolymphocytic”, I cannot resist searching the web. I look through a number of results, settling on an article by someone from the Royal Marsden Hospital in London.  I will later discover that this article, by Dr. Estella Matutes, will appear as the seminal article on any computer search of t-pll.  I have visited that hospital before, have even presented a lecture there.  Marsden is the foremost cancer institute in the United Kingdom.  I quickly scroll through the article, then freeze near the end where the median prognosis is given as seven months.  (Only days later do I reread that this was based on a 1991 study and the data was therefore three or four years older than that).  But the article also described the disease as invariably fatal.

Tish comes home and I tell her about the phone calls and the appointment.  I do not tell her about the prognosis and hide the article.  Withholding information from her for a second time in as many weeks.  I cannot remember that evening – maybe we watched a movie.  I remember feeling utterly terrified – seven months!  I was on the computer early the next day.  I think that I found a chart that listed prognosis as 24 months.  The following day Tish left work and picked me up at home.  I felt in a daze and at one point did not realize that she was talking to me on the way to our appointment.

Ray asked me what I knew about the disease.  I recounted what I had read though without mention of prognosis.  He elaborated for a while on my disease – T-PLL – discussing it in reference to other leukemias.  Even though it was classified as a chronic cancer, it acted aggressively, more like an acute leukemia.  He talked about his plan to start me on CamPath, a monoclonal antibody.  It works differently than traditional chemotherapy which can be thought of as poisons but which are not very effective in combating my disease.  Because the drug was brand new (approved by the FDA just five months before as a second lien therapy for CLL) and because of the possibility of severe infusion reactions such a fever, chills, shakes, and low blood pressure, he wanted me to enter the hospital for initiation of the therapy and close observation.  And, no, he did not want to have a central venous catheter put in me due to the risk of infection. He also wanted to start me on two antibiotics, Septra and Famvir, to prevent protozoan and viral infections.  The main concerns were pneumocystis carinii and cytomegalovirus, two pathogens that plague the population of persons with AIDS.  My mutated and defective immune system puts me in the same risk category as HIV patients.  Even herpes simplex could be a problem for me with my compromised immune system.

I had more blood drawn after the appointment.  We agreed on Tuesday to enter the hospital in order to start treatment.  Three days with increasing doses of three, ten, and thirty milligrams; followed by weekly thirty-milligram doses.  This would go on for 12 – 18 weeks.  Once in remission we would consider what is known as a mini allogeneic stem cell transplant.  Allogeneic means that I would require donors.  I replied that I had two brothers and one sister.  He had in fact already spoken with a transplant physician, one that I knew.  We had audiotaped this appointment so that we would not miss anything.  But I would not replay this tape for almost a month.  He also commented that we had covered in twenty minutes what he would normally discuss over four sessions with a less informed patient.  Aren’t I lucky! I can immediately appreciate, imagine, and foresee all of the things that most patients are fortunate not to know at this point.

The drive home is fairly silent and dark.  On the way my thoughts strangely focused on how to tell the staff, my friends at work that had shown so much concern over the past week.  I had already decided that I wanted to talk with them before I started any treatment.  Now it was something that I knew I had to do.  I called my manager and suggested that I come to the hospital Monday afternoon.  It was a bit difficult for me to talk about because she probably knew enough to realize that this was not a good disease.

But now we have a diagnosis.  It is strange to be in the position of wishing that I had a non-Hodgkins lymphoma.  No, we do not get to choose our diagnosis. I temporarily try to enjoy some small perverse pleasure in having a relatively rare form of cancer.  I have always enjoyed being a little different from others.  This is the beginning of a new journey. We have a diagnosis – T-cell prolymphocyctic leukemia.  Stop the world, I want to get off!

I don’t remember Friday evening.  I do remember crying in the shower on Saturday when I began to think about my kids and of all the things that I might not be around to see, to witness.  I remember crying in the afternoon, sobbing with Tish holding me.  This was the longest weekend.   I was so scared.  I knew too much.  I knew too little.  I imagined too much.  Maybe I imagined too little.  Hope seems elusive.  And I could not at this point even begin to construct the kind of positive attitude that I know will be essential for healing. These were my days in hell.

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