Chapter4 Four; Planning the Rest of My Life

Dave’s Great Adventure
Chapter 4, Verse 1
October 17, 2002
About Halfway...

I just sent out a DGA today that I started last week, but I thought I’d start the next one before I get too fuzzy. There is a phenomenon called “chemo brain” (really!) that affects your memory, long and short term, I guess. I just thought I’d tell you about the last few days of chemo while it’s fresh in my mind.

First, the good news about my blood counts. I had more blood drawn last Monday, four days ago, as we always do before starting a round of drugs. As before, my good guys are holding their own. My red cells and platelets are still normal. My white count is up a little bit to about 3,100, but the increase is almost entirely in greater numbers of neutrophils, the bacteria fighters, and not the lymphocytes, which can be the bad cells in this case. All the bad guys, the leukemic cells, are lymphocytes, but not all lymphocytes are bad guys, of course. But for now, the count of lymphs is staying stable and therefore my percentage of neutrophils is edging up toward normal. For those of you interested in medical minutia, we normally have about 85% or so of our white cells as neutrophils and about 10% or so that are lymphs. When I started my therapy, I had about the opposite ratios; about 89% lymphs and only about 10% neutrophils (if you’re wondering, the missing percentages are made up of other white cells called eosinophils, monocytes, basophils and a few other odds and ends). My neutrophils are now up to about 60% of the total white cells (though their total numbers are still depressed to low but normal range numbers; Natalie, they need more jokes!).

So, we started Round Four. This about marks the halfway point for me, in this chemo stuff. I’ve completed and recovered from three rounds so far and have to recover from three more plus a round, I guess, of Rituxan alone, though I’m going to try to talk my doc into giving me another full round of chemo in January if my marrow is still in good shape. I want to blast the disease as hard as I can this first time, and hopefully not give it a chance to come back!

When I went in for the drugs, I was seated next to my partner, Laurel, who has the breast cancer that has spread to her lungs and liver. She seems in amazingly good spirits and was writing thank you notes to folks who had brought food over to the house when she had to go in for more therapy. She actually was in the hospital for a day when they found the disease had spread. She was having trouble breathing because of lymph node involvement. This has gotten better since her first round of the new chemotherapy she’s getting, Taxitir, I believe. It’s a synthetic form of the older drug, Taxol, which is derived from yew trees. Laurel and I talked for a while until they gave me my premedication, at which point I turned on the CD player and went to sleep.

This turned out to be the longest course of chemo yet. For whatever reason, the Rituxan (another $1500 worth) took a long time to infuse, about three hours or more. And that was after the infusion of the premedications, and before the fludarabine and cytoxan went in. It wasn’t all that bad for me, I was in a recliner (though it is an industrial strength hospital recliner, not a real soft home-style recliner). Kathy, on the other hand, spent the whole time watching me sleep through the infusions in a straight back hospital chair. She had a sore butt and a headache before it was all over. She helped pass the time by reading and doing cross-stitch on a quilt we’re doing for Brooke, our latest granddaughter.

The last couple of days of chemo have been no problem. The IVs have gone in my veins easily and the cytoxan and fludarabine go in over about an hour. No sweat! I have been feeling a little sleepy over the last day or so as the chemo effect sneaks up on me so I pretty much slept through the short infusion today, listening again to Kent’s “One Quiet Piece After Another.”

I have to say, as much as I like the staff at the Hematology-Oncology clinic, there have been a lot of potential medication errors, with me getting incorrect doses of pre-meds, until I ask why, with the nurses asking ME what I am supposed to be getting, asking ME why the dose of Rituxan is changing, etc. We’re using a very new regimen of drugs, but the protocol is in my chart. Maybe they’re asking me these questions because I’m a doc, rather than asking my doc, because they expect me to know (as I do) but if they ask these questions of an average 75 year old leukemic, the patient likely would have no idea what was going on. Yesterday I got shorted on my steroid pre-meds. That’s not the first time my pre-meds have been wrong. But I was only short 4 mg of the 16mg of dexamethasone I was supposed to get so I didn’t worry about it.

Today after my infusions, I had an appointment at the eye doc’s office. I hadn’t had an eye exam in three years! She went over my eyes real well and I’m happy to report that at least my eyes are in good working order. She changed my contacts prescription and now I’m cleared for more astronomy nights!

I recently heard from our friend Cindy (Chitwood) Hunt, in El Paso, who’s been a friend of the family since she and our daughter went to junior high school together. She was commiserating with me on having to go to the bathroom so often during my chemo treatments. You see, she understands what it’s like. Cindy suffers from a “rare medical condition” called TWB. It is a hardship for people like Cindy who have Teeny Weeny Bladder as they have to pee all the time. We know! Cindy came to Europe to visit with us a couple of times while we were in Stuttgart. We went camping across England and Scotland with Cindy and made a lot of potty breaks! Now she thinks I should have been more sympathetic.

October 18

We also heard from Jane Forte up in Iowa who thinks it’s just “too bad” that we have to go all the way to Maui for an educational meeting. Actually, that wasn’t my first choice at all. But I needed to get some Continuing Medical Education (CME) credits before the end of the year. Like all professionals, whether they be lawyers, teachers, nurses or physical therapists, I am required to get continuing education each year to maintain my license to practice. I had to cancel a meeting we had planned for last March when Kathy and I were both sick, so I was scouring the web sites listing medical meetings that would fit into my chemo regimen, allowing me to travel during my “good “ week, the week before my next round of drugs. There weren’t many. I could have gone to a course in embalming the female cadaver (but that REALLY didn’t interest me) or a few other weird courses, but then I found this course in obstetric problems, something I was really interested in. To make it even better, it was sponsored by the same folks that had put on the meeting last March that I had to cancel (for which I forfeited a large deposit). They would give me most of my $550 deposit back if I registered for another of their courses within a year, and American Airlines would give me credit for the cancelled plane fare too. So, you see, we HAD go to this meeting! We get credit for our fees we already paid, the company picks up the majority of the tab anyway, Kathy has always wanted to see Hawaii, and I really need to get a meeting done before the end of the year for licensure reasons.

I also heard from my step-brother/cousin Tom Lee in Atlanta recently. He says my reports are his main source of reading material and it had been so long since my last letter that he was afraid that he’d have to go to the library to get a book. I mentioned in the past that Tom was my step-brother/cousin. I thought surely someone would write in to ask me about that curious relationship. He always adds to his notes (when he signs off that way), “Are we from Alabama?” He also noted that you know you are a redneck when you go to family reunions to meet girls!

Actually, the explanation, which many of you already know, is very simple. Tom’s dad, Lloyd Lee, married my Mom’s sister Marian. And Lloyd and Marian were attendants at the wedding of my mom and dad. My dad died (of this same leukemia) in 1981, and Lloyd and Marian came down to San Antonio several times to visit mom after the fact, as they had doing for many years anyway. When Tom’s Mom (Lloyd‘s wife), Marian, died in 1989, Lloyd and my mom spent a lot of time together, and finally decided to get married. It has been a wonderful thing for both of them.

While I was growing up in Texas, my family often visited Lloyd and Marian during the summers up on their farm in Iowa, near the small town of Letts. Tom and his brother Dick, were older than me and I’d hang around with them as they went about the farm chores. I was a city boy and was fascinated by all the things they were doing. One time I asked, when I was about 12, if they could teach me to drive the tractor. They said sure, and showed me how to start the motor and get it in gear. Shortly thereafter we were down in the fields and they needed the tractor and wagon brought down to where they were. I quickly volunteered to bring it, using my newly acquired driving skills. I ran up the hill to where the tractor was standing, proudly started it up and got it going down toward Tom and Dick, and Lloyd too, I believe. It wasn’t until I got down to them that I realized they hadn’t told me how to stop the silly thing! I circled around and around as they tried to yell instructions to me until one of them came alongside and jumped on to get it stopped. I didn’t drive again for a long time.

Today I’m wearing my “fat pants.” Kathy found me a pair of jeans on sale at Target for $10 that are two inches larger than I usually wear so I can be comfortable during the times I get big on the steroids. I hope I don’t get TOO comfortable in these. I usually try to make my body fit my clothing, rather than getting clothes that accommodate to my enlarging body.

PLANNING...HOW...FOR WHAT...?
You know, it is so difficult to know how to plan the rest of my life right about now. Since I really don’t how long the rest of my life is going to be (of course, do any of us, really?). I still don’t know what to do about retirement, work, etc. I really would like to be able to retire before I check out, and could probably do so if I start getting into my retirement funds now, but if I do that, and then live for another fifteen years, I’ll be broke! I’d probably have to go back to work! What a cruel trick that would be! In addition, this is a particularly bad time to be accessing my retirement funds as they’re all in the tank. They are all in stocks or bonds, most of which are ‘way down right now. I’d be like the brother of another colleague at work whose brother has a brain tumor he’s been fighting for a number of years. He didn’t expect to live as long as he has, so now he has no job and no money. What to do? I really think I’ll keep working for the near future, at reduced hours, until we see how this treatment, or whatever treatment we go to next, does. If it looks like we’re reaching the end of the line, then I’ll retire to see if I can enjoy my last few years.

But if I don’t work, I will lose out on several things (not counting the pay and benefits). The main thing will be the contact with my patients and colleagues. My work, is to a large extent, who I am. If I’m not working, at least a little, then I’m just that retired guy down the street who’s got leukemia. I enjoy the contact with the folks at work, I really do. And I personally love the feedback I get from my patients. One of the best things about what I do is that I sometimes really think I make a difference. There are moms out there who are alive because of what I’ve done, and kids who would not have been born alive except for my interventions. I’m happy about that, and am proud that I could help folks so often.

I also wonder about end-of-life scenarios. Leukemics don’t usually die sudden deaths, so there will be time to decide how and where I want to spend my last days. I’d like not to be in an ICU with all kinds of monitors beeping, all by myself, coated by fluorescent light, dying alone at about 3:00 AM (as many critically ill people do, for some reason). I read an article recently about a woman here in Highlands Ranch who was dying of breast cancer. Her final wishes were to die at home, with her husband holding her face in his hands, and she wanted her life and death to be meaningful. I think that is kind of what I’d like, but on the other hand, I don’t want Kathy to remember our bedroom and our bed as the place I died. Plus, many home sales contracts ask if anyone has died in the home. I guess some folks are afraid of ghosts or something. My dying in the house might actually make it more difficult to sell! What to do?

Planning one’s death also is not that easy to do. The scenario above, about dying with your face held by your spouse, is a great sentiment but is not easy to schedule. When you’re dying of cancer, your last days are not good days for you or your family. Generally the patient is only semi-conscious for a number of days before the “terminal event.” You wouldn’t have the opportunity to say, for example, “Come here, dear. I see the light coming to get me!” And making the family stand guard over you for days, watching you die by degrees, would not be a good thing for the family, especially when you wouldn’t even be aware of their presence. My Mom can attest to that, as she visited my Dad for days just before he died, times when he didn’t know where he was or what he was saying. Then he died in the early morning hours when Mom was at home and he was alone!

Maybe a hospice?

October 23

I faded rapidly and deeply after the above and have been away from the keyboard for several days. I think this installment is long enough, so though I have more stuff to pass along, I think I’ll get this into cyberspace and into your mailboxes. We got a touch of winter today, with some snow flurries. I’ll tell you about it next time.

I should mention, though, to ease your fears of viruses, that I wrote to the Yahoo folks a couple of times (they bought Prodigy recently) complaining that I was being impersonated and that someone was sending out viruses in my name. Their response basically was that “technically” they couldn’t stop anyone from impersonating me, and left the impression that they couldn’t or wouldn’t do anything. We had been getting four to eight returned messages a day, bounced back from inactive e-mail addresses, with virus-laden attachments (which Doctor Norton was taking care of for us) but since I complained to Yahoo the second time, they have stopped completely! They never said they were going to do anything, but I’m guessing that “technically” they actually had the electronic power to reach out to someone and get the impersonation to stop, be blocked or whatever. Now those guys are probably using some other poor schmuck’s e-mail address, from their electronic mailing list, to send out their evil messages. But at least I don’t need to worry about them for now, and neither do you.

Enough for now. I’ll be back in a few days unless you’ve had enough of this stuff and hit the delete button when you see my name in your in-basket!

Dave

PS--No one ever wrote in to tell me what a “hat trick” was, or rather, where the term came from. Does anybody really know?