I am gratified by the increase in interest in the blog and the increase in comments. Luckily though I have Askimet spam software because all of a sudden I have been attacked by a surge in spam – 37 in just a few days. What is this about? Get a life people! I will continue with my journal below, then go outdoors to garden.
Journal – December 2001
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. Cancer, pain, courage, despair, dignity, all manner of suffering have come to form the collage of our day-to-day reality. 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?
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 projects on the 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 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 today.
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 is 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.
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 have visited there 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. 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. 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. Tish picked me up the next day. I felt in a daze and at one point did not realize that she was talking to me on the way to our appointment.