It is tempting to quit. Many of us have been in a situation, where we can see the finish line or our goal, but we just aren’t sure if we can make it there. In our minds we know that we have covered most of the ground and most of the work is done. We contemplate quitting because we are bored, we’ve lost interest, we are frightened by where continuing might lead, or we are just frightened and sometimes we are tempted to quit because we are tired. When overcome by temptation to quit we have to step back and honestly assess our options and our motivation. What do we hope will happen and what we are afraid might happen. Sometimes stopping is not quitting. Stopping is sometimes a noble option. Quitting is seldom the best alternative.
The beginning of August marked 100 days since my stem cell transplant. At the 100 day mark, it is time to tests and assess whether there is still cancer in your body. Another bone marrow biopsy and CT scan to determine if there is cancer in the bone marrow and whether there are pathological lymph nodes. Unfortunately the cancer was still present, although here was less disease, it was not gone. The physician was hopeful that given more time, my donor stem cells would become better incorporated into my system and would eliminate my cancer. Three months later we did the tests again. We again hoped that the cancer would be gone. If it wasn’t gone, we wished that there would be continued decline in the size of the lymph nodes and a reduction of the presence of the cancer in my bone marrow. Our wishes did not come true.
My doctor at that time is not a man that should ever play poker. We knew immediately after he entered the exam room that things were not good. As he entered the room, he said, “This is not good!” Not only was the cancer not gone, it was in fact getting worse. In a particularly surreal moment, the doctor told my wife that he was very sorry. He then went on to tell us that we needed to start chemo again. Our goal would be to knock down the cancer again, and to then do a donor lymphocyte infusion (DLI) in January. For the first time however, the discussion of chemo and the DLI did not assume that I would automatically pursue this course of treatment. This time we would need to decide if we wanted to do this, again.
By this point I had had just over sixty rounds of chemo and a stem cell transplant. At some point it is reasonable to wonder if anything is going to work. Are we just going through a lot of treatment, sickness, fear and money with diminishing hope of cure or an extended period of remission?
With that in mind, my wife and I went home to talk and to make a decision. For the first time ever we talked about whether or not we, whether I should go forward with the treatment. We had been through a lot. It had been eight years since I’d been diagnosed with two different forms of lymphoma.
The first treatment with the R-CHOP (Rituximab, Cyclophosphamide, Doxorububicin, Vincristine Sulfate and Prednisone) protocol had gone pretty well. Although, after the sixth and final round I got a little careless, and was around too many kids at my son’s grammar school and picked up a hideous bug, which landed me in the hospital for a week.
The second round of treatment, two years later with treanda (Bendamustine Hydrochloride) and Rituximab had been really hard. Although the treanda was fantastic at knocking down the tumor bulk, I had strong and adverse reactions to the treanda and ended up in the hospital a couple of times.
The third round of treatment, prior to the stem cell transplant went well. I had been warned that it would be really rough. But it wasn’t terrible and I exercised and rode my bike right up to the time the “central line” was surgically placed. The central line was a catheter placed into a large vein in my chest, used to administer chemo drugs, medication, fluids, and to obtain blood for tests. I came to refer to my central line as my extension cord. The transplant had been tough, not unbearable, but tough. I had been in the hospital for almost a month, and then in near isolation for another couple of months. I’d lost a lot of weight and when people saw me, they often did not recognize me. Did we, did I want to go through this again?
My wife’s uncle was in his eighties when he was diagnosed with pancreatic cancer. The doctors told him that with treatment he could live up to a year, without treatment he could live six to eight months. If he went with treatment he would be sick and he would probably not be able to travel. He elected to not have treatment. He decided to enjoy the time he had, to be as healthy as possible, to spend time with his family and to really savor the time left to him. At that time I admired his decision and I admire that decision even more now.
At our kitchen table my wife and I had a very emotional and tearful discussion. Should I or shouldn’t I pursue another round of treatment. Julie told me that she and the kids needed me. She said it would be very hard but she would understand and support whatever decision I made. She had been with me through every step of the treatment process and she could not imagine going through it herself. The needles, the tests, the biopsies and all the rest of it. For me, the decision although emotional was not hard. My daughter was a junior in college and my son was a sophomore in high school. My wife and I had been together for 25 years. My life is good. I was not ready to quit.
Within a week I started the next round of chemo. We were not ready to stop.