Sunday, August 18, 2002

The Reality of Leukemia; Fear and Sorrow

Dave’s Great Adventure
Chapter 1, Verse 10

The fact that I had leukemia forced itself into my mind, finally. I had denied the possibility for a long time.

I had been ill with some undefined malady for a few weeks, starting shortly after I got an immunization for hepatitis A and had missed a couple of weeks of work. We ran any number of tests to see what was causing the problem, but couldn’t pin it down. I was negative for everything, yet I was sick, weak, feverish. My tests for hepatitis, HIV, toxoplasmosis, mononucleosis, cytomegalovirus and many more things were all negative. My liver functions were up, an indication of some mild liver damage, but they slowly returned to normal over a few weeks. Yet my white count remained high, in the 20,000 range, with about 4,000 to 10,000 being normal.

Leukemia was mentioned early as a possibility since nothing else was showing up, but we really didn’t think it was likely; leukemia doesn’t present with fever and weakness. It MUST be something else! I slowly recovered from my symptoms and began feeling normal. I returned to work and we followed my white count weekly, but it stayed high. I kept looking for a reason other than leukemia for my white count to be so high, but nothing panned out. Finally we did a test called flow cytometry which specifically analyzes the white cells. My doc was out of town when the results came back, but another friend, an internist named Kin Chan, called to tell me that the test was consistent with CLL. At that moment, everything changed.

Yesterday I was living, today I’m dying.

Intellectually, and in the abstract, we all know that we’re “dying” and will eventually succumb to something. But suddenly I had the name of the disease that would kill me, and a vague time frame for the remainder of my life, perhaps three to five years. It wasn’t supposed to be like this. We have so little malignancy in our family, and so much cardiovascular disease that I was “certain” that I’d die a cardiovascular death in my 70s, like so many of my male relatives. Maybe I’d even get into my 80s, since I never smoked, did any illegal drugs, didn’t drink to excess or did so many of the other things that my uncles did, especially the smoking, that caused their demise by sudden heart attacks in their 70s, as had happened to every one of them

Damn it! Why the hell did this have to happen to me? It wasn’t fair. My only vice was butter and cream, not toxins like cigarette smoke and stuff. I wondered if my exposure to Agent Orange in Vietnam might have caused it, but there’s no known connection. There must be some reason I got it! It’s not supposed to run in families and Dad was the only person in the family that ever had leukemia. We were told when he died that it was probably his exposure to chemicals all his life, as a clinical laboratory officer, that caused it. I should have been safe from this disease. Damn it!

At that moment, everything changed. I realized instantly that I wouldn’t live to see my grandkids grow up. I wouldn’t live to see my family grow with more spouses added to the family tree and with more grandkids at some point, and mostly, I’d have to leave Kathy much too soon. We had planned to grow old together and live a quiet life in retirement in New Mexico. I knew at that moment that we couldn’t do it even for a short time. I couldn’t retire. I couldn’t leave Colorado. I was uninsurable. I could never get health insurance anywhere else ever again.

Yesterday I was living, today I’m dying.

Because I can’t leave town, because I can’t get health insurance elsewhere, I’d have to keep working, if only to get the health benefits. Kaiser takes very good care of its docs, but I haven’t been with the organization long enough to retire (though if I quit, I would get a stipend if I’m still living at the age of 65). I could quit and pay for the insurance myself, but my only income would be my Army retirement, which isn’t enough to pay the bills. As soon as I got the diagnosis, I knew I would have to keep working, essentially until I died or was at least old enough to get into my retirement accounts. That’s not what we had planned, at all.

Yesterday I was living, but now I’m dying.

I was stoic about the diagnosis for several days, continuing about my work in the clinic, but inside I was anguished. I kept seeing the patients, but found it hard to concentrate on what they were telling me. Their problems seemed so trivial. They had cramps, maybe some spotting, perhaps a vaginal discharge. “Lady,” I wanted to say, “You think you’ve got problems! Let me tell you about problems. I‘m dying!”

I could not sleep. I was so worried inside that I could not rest or sleep. I took sleeping meds, and they forced me into sleep but only allowed me a few hours of rest, then I’d awaken again and thrash around until time to get up. On about the third day after I got the diagnosis, I was on the way home from the hospital when I suddenly started sobbing. I was going to have to leave Kathy! I was supposed to be there for her for all her life, and I was going to leave her alone and lonely. I sobbed all the way home. And when I got home, I looked at Kathy and broke into uncontrollable sobbing once again. This went on for several days.

I was able to control my sorrow, for the most part, while I was at work and my mind was on other things, but a couple of times, while talking with friends in the clinic, I would think of Kathy and break into tears. Joan, Debbie, Tammy and my other wonderful friends at the clinic were comforting and helped as much and as often as they could. I got more hugs that week than I’ve gotten in the previous nine years.

A couple of weeks after I got the diagnosis, I was still not sleeping, despite taking sleeping meds every night, even in larger that prescribed quantities. I dragged through the days, tired, like I have all my career when I was tired. I’m a doc; I’m supposed to work even when I’m tired. Kathy had her surgery during this time. She did well, but during this time I was on Labor and Delivery one Saturday. I was going through the motions, doing okay, when I suddenly became disoriented. I didn’t recognize where I was on the L&D ward. I went to the doc’s lounge to lie on the couch. The beeper went off, I looked at the number but didn’t recognize it. I looked and looked, and after a minute or so, I realized it was my home phone; Kathy was beeping me! I was just completely exhausted from not sleeping night after night.

Two days later, Kathy awoke in the night with acute abdominal/chest pain. I went over all her symptoms, in the middle of the night, trying to see if she was having a pulmonary embolus, a bowel obstruction or any of the other myriad things that can go wrong after surgery. I did my best with just my hands and my ear on her chest and abdomen and decided that she probably did not having anything life-threatening going on. I gave her some pain pills and she did okay. Thank God I was right. Now I worried about her more, too. I got up again in the morning and went to work.

I must have looked like hell. When I got there Joan asked me how I was doing. I said "Okay," but she wasn’t at all convinced. She quizzed me about what was going on. After talking a bit, she talked me into calling our boss and going back on sick leave. I didn’t want to do it because it meant inconveniencing so many patients and causing so much work for the others, but she was right. I needed to take some time off. I was physically and emotionally exhausted. I was to the point that I really couldn’t concentrate to even drive to work, so many were my worries.

I worried that if I was to die soon, there were so many things I had to do to help Kathy, while I still had the time. I fretted about what to do. I wanted her to have a new car, a place in Texas to go to so as to be nearer our kids, I wanted to give away my stuff or at least organize it for her so she’d know what to do with it. There were so many things to worry about and do, and I couldn’t get them all done. It was impossible. I worried about what would happen to her, how she’d cope. How she could get all the things done that needed to be done. And where should I be buried? Should she have to make that decision?

I don’t, at least on a conscious level, fear death. I just get intensely sad when I think about leaving Kathy. I cry frequently when these thoughts get into my mind. I was crying a couple of weeks ago at Handcart when I was there with Kathy. It was so beautiful being there with her. I shouldn’t have to leave her. But then, I guess we’re not the first couple in love that has been separated by death. I cried like this when I had to leave for Vietnam, when I didn’t know for sure if I’d ever see her again. This time, however, there’s no doubt that I won’t coming back.

I’m sad about leaving my kids and grandkids too, but I don’t worry about them so much because they have other loved ones in their lives to help them along. Kathy will be very well taken care of financially, but that’s not what’s most important to her. She’s not much into material things. I mean, my income is in six figures, but she still shops at Target and Mervyns. I don’t think she’s ever even bought anything in Nordstroms or Lord & Taylor! The money will make sure she can pay her bills, but that won’t be what I worry about for her. She’s not a person who likes being alone. We’ve been together so long that we almost act as one organism, never doing anything without the other. Again, I worry about her being alone and lonely.

It’s been several months now since I got the news about my leukemia. I know it’s terminal, but I know I have some time left and several possibilities for treatments to stave off the disease for a while. We’ve used the time over the last few months to make some tentative plans and to do some things we needed to do anyway, like seeing a lawyer and getting wills and powers of attorney set up. Our previous wills were about twenty years old!

Curiously, this disease has allowed me to be with Kathy more than usual. Since I’ve been off work, we have had the opportunity to spend much more time together. We’ve seen movies, gone out to eat, had a picnic and have just done errands together. Sometimes I’m not a lot of company, like when I’m feeling really tired and am just lying in the hammock, but at least I’m at home with Kathy and she can be nearby and keep checking on me, bringing me my fluids, snacks or whatever. We have always been a rather cuddly couple, but now we hold hands and hug even more than we used to. Now we know our time together is measured in double digit months and not double digit years like we used to think.

Next week I’ll be seeing my doc again. I’m going to try to pin him down as to how much time he REALLY thinks I have left, so Kathy and I can make some reasonable plans for the next few years. I honestly don’t want to work until I die. That’s too much like the old saying, “Life’s a bitch, and then you die!” There must be some other reward before I check out. I want to be able to retire. I’ve been saving money all my life; I’d like to enjoy some of it before I go, but most of it is in retirement accounts that I can’t get into until I’m 59 1/2. Hell, I may not see the age of 59 1/2. We’ll see what he says, and what we can work out.

I’ve been working this week. I’ll tell you about that later. Next week we start the Rituxan. I’m anxious to get on with this. I’ll give you another update early next week when I start Chapter 2.

Until then,