Postscript Number Four: How I Spent My Summer Vacation

Dave’s Great Adventure
Postscript #4
August 19 2003
No News Is STILL Good News

Hello again, to friends, family, co-workers and those of you receiving my writings whom I may not even have met. I’ve been getting occasional inquiries from folks who wonder what’s going on here in Colorado (with me I mean ) since I haven’t written any updates in about three months now. Fair enough. Just so no one will worry that I’m not doing well, I’ll send a report on what’s been going on with me and the leukemia over the past months.

Not much.

The last major event in my treatment and plan for the future was to try to collect some stem cells from my circulation while I was in remission. You may remember that I had to go through several appeals to get my insurance company to even approve the collection of my stem cells and allow me to bank them away for future use, only to find out that my body wasn’t even making enough stem cells for us to be able to collect them! As of my last message in May, we were waiting for my marrow to recover enough from the abuse at the hands of the chemotherapy to be able to try again to collect the cells. We’re still waiting. My “transplanter” doc, Jeff Matous, wanted my white count to get up at least to 4,000 or so before trying again. So, we’ve been doing blood counts on me monthly but have been seeing my white blood cell counts just fluctuate in the mid-3,000 range since about last April or so. And so, we’ll keep doing these counts until the collection becomes possible, hopefully sometime before the leukemia returns.

What have I been doing with my time? Well, one major thing I did was go to Alaska with Kathy in June/July. I had been mentioning starting to do more traveling with her since last year, when I got the diagnosis of leukemia, since we now know that my life expectancy is likely less than we had planned (though, who really knows what their life expectancy will be, anyway?).

So, we scheduled a trip through a great travel agency called Rainbow Mountain Adventures, run by Collette Murray. Collette put together a wonderful, beautiful, relaxing and varied trip for us. We didn’t go on a cruise, didn’t go with a group, and weren’t on anyone else’s schedule. We were able to do things largely at our own pace and weren’t constrained by a tour director, a cruise liner schedule or by the speed of the slowest person on a bus trip. It was a great time. We went whale watching with two other folks in a small boat, we cruised up fjords to watch glaciers calve icebergs into the sea, we got up close to brown bears, we flew up to and landed on a glacier and walked around on it, we watched bald eagles all day, and much more. And we spent five nights in a very friendly B&B in Juneau, The Alaska Wolfhouse, run by Phil and Clovis Dennis, very nice folks whom I’m now also pestering with my “adventures,” after having discussed my condition, the meaning of life and much more while with them. If anyone out there is considering a trip to Alaska (and I think all of you should; it’s simply grand!) I have to recommend Collette Murray and her crew (www.rainbowmtnadventures.com) for your planning. They were wonderful. And if you’re going through Juneau, stop in at the Wolfhouse, but do it soon. Phil and Clovis are moving to Washington state next year to be close to their grandkids. Kathy and I have to appreciate that motivation!

I’m still working in the clinic four days a week, with a couple of day shifts on Labor and Delivery per month, on weekends. Work is going well, but as I mentioned a few months ago, I feel tired a lot. Perhaps I know now why, after having an adventure of another sort recently.

About two weeks ago, on a day off, I was doing chores around the house, but feeling extremely fatigued. I came in to sit with Kathy after a bit, and noticed that my pulse was very erratic. My heat was skipping about every other beat. I had Kathy feel my pulse, and she immediately wanted to take me in to the clinic to have a “real” doctor check me out. I told her I’d like to “wait” a while. For what, you ask? As I have told my family many times, “waiting” means I want to wait until the condition gets better or I die, whichever comes first. Well, Kathy wasn’t happy with that, so we ended up going in to see my doc. I figured that he’d listen to my heart, do an EKG and send me home.

But NO....!

As soon as he saw the EKG and listened to my heart, they got an oxygen mask on me, put an IV in my arm and sent me by ambulance to the hospital. There, they were to do a bunch of lab tests to see if I was having a heart attack. I was sure I wasn’t and was therefore confident that I’d soon be going home. Yeah, right. Well, all the lab tests came back normal, and my heart settled down into more of a normal rhythm so I prepared to leave, when the doc in the ER said I’d have to stay overnight for some prolonged monitoring and testing. Just great!

They put me in a back room in the ER and monitored my heart all might long. I didn’t get a lot of sleep. Intermittently they came in to check my blood pressure, pulse and so on, or to draw some more blood for tests. Then, in the morning, they set me up for a “stress test” where they hooked me up to an elaborate EKG machine and then put me on a treadmill for about ten minutes, with gradually increasing speeds, to see how well my heart was functioning. Well, hell, I was stressed even before we started after not having gotten enough sleep the night before, but I’m happy to say that my heart passed the test and I was finally allowed to go home after about eighteen hours in the hospital. Later this week I’m to do a 24-hour monitoring test to see how often my heart is doing these strange things. Then, we’ll see if I need medication to make it more normal.

Another medical misadventure I experienced recently involved some dental work. About ten days before we were due to leave for Alaska one of my two remaining wisdom teeth cracked and was causing me a lot of pain. I didn’t want to be traversing Alaska with a sore tooth so I went to my dentist, who confirmed that the tooth was cracked and needed to come out. He then referred me to a local oral surgeon to get it taken out. Now, I had two of these teeth taken out years ago without any problems and I expected the same with this cracked tooth.

Say it altogether now, “But NO...”

Over the last few decades this particular tooth kinda fused with the surrounding jawbone. The oral surgeon tried to extract it intact, then he cut it in half to try to take out half at a time, then he broke off the top of the tooth and drilled and pried until he finally was able to get all the parts out of my jawbone, where the roots, in addition to fusing to the bone, had curved in towards each other. Thank God for great anesthetic injections.

But that wasn’t all. We went home, with a packing of gauze in the hole in my jaw, which I was to replace about every two hours. The first time I tried to replace it, blood began flowing, literally, from my mouth. I replaced the packing, bit down hard, and was able to stop the bleeding. But every time I tried to replace the gauze the same thing happened. I started wondering if my blood wasn’t clotting properly, as my platelets were a little low, but they should have been more than adequate, I thought, to stop most bleeding.

By nine o’clock at night I was still bleeding heavily every time I tried to take out a pack. So, we called, that is to say, Kathy called the oral surgeon (since I had to keep my mouth tightly shut on the packing) and told him of our problem. He told us to meet him at the office in about thirty minutes, which we did. I got back in the operating chair, opened my mouth so he could take a look, and he said, “Wow, that’s impressive!” Blood was still flowing heavily and rapidly.

What had happened, apparently, was that with all the digging he had to do in my jaw, he cut a small artery, but the artery had been tightly constricted by the epinephrine in the anesthetic, and so had not bled until later when the anesthetic wore off. He quickly packed the bleeding hole with some stuff we use in the OR called Surgicel, which helps make blood clot. Then he packed the hole with gauze again and I bit down hard, to see if the bleeding would stop. While I was biting down, we were discussing what our next step would be. The arteries are hard to stop; they come right out of the bone and can’t be tied off with sutures, etc. We thought maybe we’d have to go to the hospital and have a radiologist put a catheter in the arteries in my neck, then work it up to the jaw to inject stuff to block the bleeder from inside. I didn’t want to think about that possibility.

Thankfully, when I finally opened my mouth, after ten minutes of pressure on the Surgicel, the bleeding had stopped. We left the clinic and headed for Wendy’s for some food, since I hadn’t had anything to eat or drink all day. Kathy treated me to a Frosty, a milkshake dessert for those of you who may not patronize Wendy’s burger places. The food stayed down and the bleeding stayed stopped! It was a long day. The hole in my jaw hurt for weeks, but didn’t delay our Alaska adventure. I just took lots of Motrin.

You may remember that we are suffering quite a drought around here. I’ve mentioned the water use restrictions that have been imposed upon us. Well, the great blizzard of last March helped the situation a bit, and we had a relatively wet spring, but the restrictions remained, and people around here were very compliant with them. So compliant, in fact, that the water company was losing money! Think about that for a moment; what company can possibly stay in business by selling less and less of its product! So, even as they were telling us that the drought was NOT over, they began removing many or even most of the water use restrictions because they needed the income. Interesting local politics!

In other “local news,” our friendly squirrel, Stubby, the one who bit me last spring, has become a neighbor. She used to live in a large cottonwood tree about 200 yards away, but this spring, shortly after she bit me, she took over a magpie's nest in our back yard in which to raise her pups, or kits, or whatever baby squirrels are called. I hope that’s as close as she gets; we don’t want her family moving into our attic.

Going back to the leukemia, for a moment, I found a follow-up report from the M. D. Anderson Cancer Institute, in Houston, describing recent findings on the people they had used the Cytoxan/Fludarabine/Rituxan chemotherapy treatments on, the treatment protocol that my doc also used on me. Three years after the start of their study, they have found that 75% of their patients who went into remission are still in remission. That is extremely good news, as it would seem to indicate that there is a real good chance I’ll still be in remission a couple of more years from now (since I‘ve already been in remission almost a year now). Hey, that means I can plan a few more trips and spend some more money!

To close, I’ll mention the Veteran’s Administration again, as I did several months ago. They have decided that my disease may be Agent Orange related, based on my Vietnam exposure, and therefore I (and Kathy, on my demise) may be able to get a pension based on medical disability. So, I was invited to go to the local VA hospital for an evaluation recently. What they did was a complete, but fairly brief, physical examination and a few lab tests. It was done very efficiently and right on schedule but the whole process was incredibly impersonal. Most of the folks I interacted with hardly acknowledged my presence as they drew my blood, etc. But now it’s over and I’m just waiting for the paperwork to see what it all will mean to Kathy and me. I’ll pass on the news as it comes in.

And I think that's plenty of “update” for now. I’ll close this note and get in off into cyberspace.

Until later,

Dave