Setbacks

Dave’s Great Adventure
Book Three, PS2
February 17, 2009

You know, things had been going so well. Probably too well. I couldn’t expect things to go perfectly forever, could I? I got through six months of a new, experimental chemotherapy without any real complications. Sure, I had some side effects of the drugs, with headaches, weakness, body aches and the like, but no complications, really. I’ve seen folks around me, in the chemo rooms, have complications with their blood pressure dropping to dangerous levels, I’ve seen chemo failures, I’ve seen dangerously low blood counts as a result of chemo, but I’ve managed to either escape these problems or, in the case of very low blood counts, have escaped any problems resulting from them. And I haven’t bled into my lungs, had a bowel perforation or developed any brain damage, as can happen with the Avastin. I’ve done well.

The last time I wrote I had just completed (walked, really) a five mile leg on a marathon relay team and was feeling just great. In fact, the very next morning I went out and walked seven miles. That same day I also saw a flyer about an upcoming 15K (about nine miles) run/walk and figured I should be able to do that, and signed up for it. I was perhaps a bit too confident. A couple of things have happened recently that are results of the chemotherapy and/or my disease that have really slowed me down and set me back in my training and recovery. The first takes a bit of explanation and a little history.

After my early chemotherapy, and especially after my second round in 2004, my marrow was severely damaged, intentionally to be sure, but nevertheless, severely damaged. As it reconstituted itself, my immune system was similar to that of a baby, “seeing” things as if I was encountering them for the first time; germs, protein, allergens, etc. As a result, a strange thing happened to me. After drinking milk all my life, I became allergic to it, and fairly seriously so.

I didn’t realize it at first, because I was taking antihistamines every day just because I was congested from pollens and dust in the Denver air. I noticed occasionally that I had some tingling in my lips after eating frozen custard, which I loved because it was 10% butterfat (!) but I didn’t pay any attention to the tingling because it went away shortly after I enjoyed my dessert.

But I was very tired just about every day, and I didn’t know if it was because of the leukemia, a lingering effect of the chemotherapy, or perhaps a side effect of some of the drugs I was taking, like the Claritin and Sudafed. So, I stopped all these drugs just to see if I would feel any better. And about that time I ate some cheesecake and drank some whole milk. I started feeling strange.

I first began wheezing and breathing very hard, and then I developed welts all over my body. Kathy was worried about what was going on, because at the time I was also being treated for bronchitis, and suddenly I wasn’t breathing very well. I gave her my usual “I’m fine!” routine but at some point she said that if I didn’t get in to the clinic to be seen she was going to call 911! I guess she was serious.

So I went to the clinic that Sunday morning where they diagnosed my condition as an allergic reaction. Because I’d been taking erythromycin for the bronchitis, my docs decided I was probably reacting to it. It didn’t seem likely that it was the cheesecake or milk because, after all, I’d been eating and drinking milk products all my life. On the other hand, I’d had e-mycin multiple times over the course of my life and hadn’t had any problems. In any case they stopped the e-mycin, gave me injections of Benedryl, shots of steroids and a steroid dose-pack to take home with me, and away I went.

Meanwhile I went back on the Claritin because I felt worse off it than on. I didn’t notice any change in my fatigue while off the drug so I didn’t see any reason to suffer from the congestion too. And things went along okay for a while, but I still had the occasional tingling, and a little swelling of my lips, after frozen custard at our favorite little shop, CJs Frozen Custard in Lone Tree, Colorado. Great little place and wonderful people that run it too. If you live in Colorado, give it a try some time. Anyway, nothing else happened after the slight tingling I sometimes felt. [This story is getting too long…which is not an uncommon phenomenon when I write. I’ll try to “cut to the chase].

At some point I again stopped my Claritin, don’t remember why, and within a short time had some bad reactions after eating more frozen custard again after eating some creamed beef made with whole milk. I had swollen lips, swelling in the back of my mouth and in the soft palate and hives all over my body. This time I wasn’t on erythromycin so we couldn’t blame it on the antibiotic. I was sent to the allergist for testing and was laid on my belly while they injected my back with 99 shots of various proteins, checking to see what I would react to. One injection stung like a bee sting…it was milk! That was amazing to me (though I already suspected it) because I’ve drunk milk, eaten cheese, butter and ice cream and put cream in my coffee all my life.

My allergist said he had seen similar problems in folks with HIV who developed AIDS, which wiped out their immune systems, and who then were recovering after using the anti-retroviral medications. I have a similar situation as my immune system has been severely compromised by the drugs I’ve taken to wipe out my abnormal white cells, the leukemic cells, but which also take out just about any white cells they come across. My new lymphocytes didn’t recognize milk proteins as “okay” and developed abnormal antibodies to them, resulting in the allergic ractions.

So, knowing that I was allergic to milk (but not cheeses, sour cream, ice cream, for some reason), and knowing that the very weak antihistamine Claritin was somehow protecting me from these bad reactions, for the most part, I went back on Claritin daily, for years. I did well.

Skip to late 2008. I was having chronic sinus infections, which goes with the leukemia. I saw an ENT doc about it here in Denton and he wasn’t happy that I was taking Claritin (and some other antihistamine, too) on a daily basis. “Thickens your mucus,” he says, and he wants it thinner so it’ll drain better. “Cool,” say I, because I haven’t had any problems with milk in years now and I think that I’m “over” the allergic reactions by now and it’ll be one less pill for me to take every day.

On Christmas day we were at our daughter and son-in-law’s home for a Christmas brunch. She made a pluck-it cake, a family favorite, for the brunch. I decided to have a glass of milk with it, just a little glass of milk. Man, within minutes my lips had started swelling, followed closely by swelling in the back of my throat. Then the hives started. I started taking Benedryl, which Kathy carries with her everywhere, and did pretty well, though the swelling in my mouth, as usual, didn’t totally resolve for about 36 hours. Fortunately I continued to breathe well so we didn’t have to use the epinephrine injector pen, which Kathy also carries with her everywhere, but I now know that I’m still allergic to milk and will likely have to be on antihistamines (for life?) or avoid milk. I can’t (don’t want to) avoid milk! Or frozen custard! Hell of a deal…. I remain mystified that such a weak antihistamine as Claritin is all it apparently takes to prevent, for the most part, any serious reactions to my exposure to milk proteins. I do, uhh…, test it from time to time by going to the local Culver’s Frozen Custard shop in nearby Flower Mound, Texas. So far the Claritin is still protecting me.

And that, in just three pages, is the first problem that cropped up.

Part II: Since I’ve been sick and have had chemotherapy, and have been immuno-compromised, Kathy and I do everything we can to avoid sick folks. We avoid crowds, known sick folks, anyone who is coughing, I don’t touch doorknobs if I can avoid it, and I wash my hands obsessively. But sometimes you just can’t do these things.

Over Christmas we had a family reunion here in Denton. Most of the extended family was able to gather here and visit with Mom, who was spending her first Christmas in Texas in many, many years. Now, you can’t really avoid crowds when you’re hosting a family reunion. And on top of that crowd, we had a couple of holiday functions in the neighborhood that we wanted to attend, because it’s nice to be with the neighbors from time to time. Some folks were coughing. Normally we’d have stayed away from them, but I figured I must be doing better; I hadn’t had a cough or cold in a couple of years. Well, as it turned out, I really wasn’t doing any better (just like I wasn’t over my milk allergies), it was just that Kathy had been watching over me and keeping me out of trouble by avoiding crowds. So, after being around lots of folks, I got sick. I really got sick.

A few days after I signed up for the 15K walk, I started feeling sick and the “feeling sick” progressed to “being sick.” I was as sick as I’ve been in years, with the cough that has been going around so many parts of the US. After being short of breath for about ten days (I don’t give in easily!) I went to see a real doctor. My doc listened to my chest and gave me a diagnosis of pneumonia! He prescribed a very powerful oral antibiotic, Avalox (moxifloxacin), and sent me on my way. The next day, my mom, who had also gotten the illness, was coughing up so much stuff she was gagging on the phlegm. I took her in too. My doc gave her a simpler antibiotic (doxycycline) because she is on blood thinners which are affected greatly by most antibiotics. Mom was better in about three days.

A week later, I was worse. I went back; my doc listened to my chest again, mentioned a possible hospital admission, and gave me a shot of steroids for my wheezing, a steroid and bronchodilator inhaler and the same antibiotic he had given my Mom the week before, but at a higher dose. I was feeling, not well, but better within a few days, and so, because I had now infected Kathy with the cough too, I wrote her a prescription for the same antibiotic. She got better within days. [The fact that the disease responded to doxycycline and not the Avalox probably means it was not a “regular” pneumonia, caused by pneumococcus, but more likely a mycoplasma infection, or maybe even something like Legionnaire’s disease.] I slowly got a lot better, but after I finished the ten days of antibiotics, I started relapsing. Man, I didn’t want to go to the hospital, so I wrote myself a prescription for the same antibiotic, the doxycycline, again, but for a longer time. Over time, another week or so, I finally recovered. But the pneumonia/ bronchitis, or whatever it was, took the month of January from us. I’ve just proven to myself that I can’t break our rules about avoiding sick folks, whether they are friends or family. My body can’t tolerate it and is still just too weak to take chances. I just don’t have enough effective white cells.

And that’s how I spent my Christmas vacation. And all of January, too. In other leukemia related developments, my blood counts are either staying stable or getting slightly better. I’m still just a little anemic but not enough to bother me too much and my platelets are slowly, very, very slowly, increasing, up to 84,000 at last count earlier this month (from 40,000 just after we finished chemo in July, normal being greater than 150,000). My white count is still sub-normal at about 2,800 (normal being over 3,000). That’s both the good news and bad. It’s good as when my counts start climbing again, the disease is probably recurring once again. It’s also the bad news because I need white cells so as not to get as sick as I was in January!

I’ve started walking again and have been inspired by my early successes in the short 5K and 5 mile runs, to sign up for a TNT fund-raising half marathon in May (check out the link below; if you can spare $25 or so, I’d very much appreciate it, and so would many other folks with leukemia). We’ll see if I can actually do it. I’m walking pretty well with good tolerances to the distances (back up to five miles or so thus far) but I notice that after the walks, I frequently develop general body aches, not in muscles actually, but all over my body and sometimes I feel sick for a day or two afterwards. I’m wondering if this is some prolonged chemo effect and if it’ll wear off. I’ll be asking my oncologist when I see him again.

I have to wrap this up and get it into the electronic mail, as we’re leaving on a long-planned trip to Antarctica later today. Typically of me in my retirement years, I haven’t even finished packing so I have a lot to do today. In former times I’d have had multiple lists made and things out and organized days ahead of time, but no longer. Hopefully I’ll have everything I need ‘cause once we get down to Antarctica, there are no drug stores, no shops, and nothing where one can pick up the things you left behind.

Thanks to so many of you who wrote messages to me after my last letter; my cousin Curtis in San Francisco, Jane in Iowa, Amber in Houston, Liz and Steve in Englewood, CO, Brad and Ann in Iowa, and many more. I love hearing from you guys, and my failure to respond was a function of Christmas closely following my last chapter and then the month of illness that followed, which allowed all your messages to get buried in the e-mail queue. It wasn’t for lack of appreciation of your messages, which I really love to get, but for lack of discipline on my part.

And that’s just about all for now. There’s always more later. Perhaps a report on Antarctica in the coming months….

Dave
http://pages.teamintraining.org/ntx/ntrails09/deckberg
www.adventureswithleukemia.blogspot.com

“The whole aim of practical politics is to keep the populace alarmed and hence clamorous to be led to safety, by menacing it with an endless series of hobgoblins, all of them imaginary.” H. L. Mencken