Cytoxan, Rituxan, Random Stuff and My Hair Is Falling Out!

Dave’s Great Adventure, Book Two
Chapter 2, Verse 8
March 8, 2004
Steady progress, I guess....

It snowed, gently, Thursday night.

It was still dark when we got up. Kathy and I had to be up early again, by our standards (and I know there are plenty of you who have no sympathy for us, but we have no kids in the house). We had to be back at the Rocky Mountain Cancer Center by eight or so for my last round of Rituxan. That means getting up before six to get ready to leave and for the almost hour long drive. Plus, getting ready to go anywhere in the morning takes longer than it used to. No longer is it just the shower, teeth, shave and deodorant routine. Now I get to dress the “exit wound” on my chest, cleaning it and scrubbing the area with antibacterial stuff, then covering it. I usually tape the tubing to my chest to try to minimize the chance of ripping it out accidentally. Then I clean and flush the tubing every morning with heparin syringes. Then, I get out two vials of Neupogen, pick out appropriate syringes and alcohol swabs, and pick a site in which to inject myself (at about $1000 a shot), rotating the place each morning. Then, I can get dressed.

I came down to eat a quick breakfast that Kathy always has prepared for me. By then the sun was up, and I saw the scene behind our home, the scene left by the spring snowfall. Every branch and every needle on the Austrian pine behind the house was whitened with the weight of its new color. The aspens, still skeletal this time of year, were coated as well, but perhaps not as beautiful. Just across our back fence, all of 20 feet or so from the house, the prairie had been dusted as well. Each stem of prairie grass and each branch of scrub brush and yucca in the green belt leaned under its transient pure color, hiding its autumn colors. A heavier coating than we sometimes see when hoarfrost covers the remaining natural grasses to our north in colder times, certainly, and just as wonderful to behold. We see photographs of such scenes in galleries and on restaurant walls, and always think they are so lovely, so beautiful, and think to ourselves thoughts that compliment the photographer/artist. But the person manning the camera is not the artist. That person merely freezes the visual poetry for others to enjoy. It’s God’s natural beauty that we are gifted with in so many ways, on a regular ever-changing schedule. And it’s all around us, in the trees, like the snow we were seeing, in the faces of our children and grandchildren and spouses, in the orange and blue Bronco sunsets we have over the Rocky Mountains. We just have to see what we’re looking at. Pictures are nice, but we can get the genuine item through our window panes.

We drove downtown to the RMCC. Got there a little early...as usual. We checked in and went to the back, where they were a little surprised to see us for some reason. So we went into a room, I got on the bed and Kathy took the chair, awaiting whatever nurse was to care for me that day. Generally someone is there within a couple of minutes. One young nurse came in; “Are you here for a bone marrow biopsy?“ she asked. I declined the invitation. We waited, waited, waited. I napped. The Cytoxan has again been causing me simultaneous fatigue and insomnia. I’d forgotten about that particular effect. I seem to be tired all the time, but have problems sleeping. After close to an hour Kelly, who had helped us before showed up and got right on things with the infusions, premeds (more than I needed, again) and flushing of lines, etc. She liked me better now that I didn’t require having an IV put in. We gathered from her comments that she didn’t realize that we were to be there early and wasn‘t scheduled to be there until later as she had stayed late the evening before to help with a procedure. But she was great, got things going and very soon we were underway with the last of the four doses of Rituxan that I’ll have to have during this treatment. We were done by noon, despite that late start.

Some of you guys may remember (I say this a lot) that when I had Cytoxan before, ‘way back in “aught 2,” I had unusual cravings, generally for spicy stuff. The cravings hit yesterday while I was getting the Rituxan, and so I got a fix of hot wings on the way home from the clinic. I guess I’m getting to the phase where I can't get fresh stuff for a while (loaded with germs, you know) so hot wings are a good thing.

When we got back to the house, the day had warmed and the spell in the prairie was broken, but now there were birds on the deck pecking through the snow at the birdseed we put out there for them and our friendly squirrel neighbor, Stubby, was back for a handout. Remember? She’s the one that bit me last spring. I can’t tell yet if she’s pregnant again, but she generally is this time of year.

I mentioned not too long ago about the run of things that had been going “aglay” around the house, with the roof, water heater etc. I could have, but didn’t at the time, mention that the power steering pump on the “Ow-di” is also going south. Now, our friend Kent, down in the westerly part of Texas, has an old Taurus with gazillions of miles on it. His power steering pump recently bit the west Texas dust, but he replaced it himself for about $30 or so. I used to enjoy working on my cars by myself, not just for the savings, but for the satisfaction. But now, I can’t fix much of anything on my cars. I can’t even get TO the power steering pump. Our local Audi dealer wants $800+ plus for a new pump. Ow-ch!

And then just a couple of days ago I was on-line looking at some reservations for Dallas to see the kids and grandkids, when the computer monitor blew. Just a little “peep” and it went dark! Now, as I mentioned to others, I don’t know why we can have a television that’s more than a decade old, doing just fine, but the damned computer monitors, just another kind of cathode ray tube, can’t last more than a couple years, even when you get a decent brand.

Like many Americans these days, we’re completely dependent on the bleeping thing. It’s especially bad when we’re housebound, but we use it everyday for lots and lots of things, communication primarily, but ordering stuff, record keeping, making reservations and more. So, we had to go out and get another monitor. Right now! I was a couple days post-Cytoxan and not feeling well, but it wasn't going to get any better. I didn’t want to go out really, but it was late in the evening so we didn’t expect crowds. We could have ordered from Office Max, since they deliver...but of course we couldn’t order on-line...no monitor.

Office Max is less than a mile from home. We went there and looked at their selection. Imagine...they were out of monitors except for some 17 inch CRTs, and we only have space on our desk for a fifteen inch CRT. Out of monitors? Man! So we went further. Circuit City wasn’t too awfully far away.

I have a problem shopping when I’m tired. This has manifested itself over the years when I’ve gone out to buy things after being up for a 24 hour shift at the hospital. I didn’t often make good decisions. I just react. Being on chemo is the same. I don’t process things just exactly right!

We got to Circuit City, went to the monitor section and looked around. Cool! Lots of neat stuff! I bought a 17 inch flat screen monitor! I even bought a four year warranty. I never buy those cheesy worthless warranties. But I didn’t even think about it much. Oh yeah, threw in a DVD of “Apocalypse Now,” too. So now I have to get a $6000 plasma TV so I can watch my DVDs the way they were supposed to be seen (hey, it’s just the chemo talking!). We went home, plugged the monitor in, and installed it despite being somewhat chemo-addled.

WOW!!!

I think back and wonder, how in the hell did we ever survive with that 13 inch B&W monitor back in years past? Speaking of which, how did we manage at all with those old computers? We had a Commodore 64, with all of 40 megs on its hard drive and, what, eight of RAM? Moving from the more recent 15 to the new 17 inch screen was a wondrous thing. Hey, you all should do it, it’ll change your life. Well, maybe. What a nice view we have now, even with a relatively cheap brand (ever heard of LiquidVideo?). Chemo brain worked out well this time.

The Cytoxan effects are very slowly abating, fortunately. No more nausea, the other end of the GI tract has slowed down (too much, actually), and although I’m still tired, I think I’m getting better. But now my hair is falling out, “gently.” Nothing in wads yet, but more and more seems to be dropping out daily. I’m debating getting it all cut off now, versus waiting for the big “fall.” I need a haircut. But I don’t want to get a haircut now and then go back in a week to have my head shaved. What to do? The next thing I have to do is to start getting blood tests every day, starting Monday morning, to see if/when we can start collecting the stem cells.

I’m finding that the costs of this treatment are increasingly expensive, far more than I realized. When I first applied for it about a year ago, and went through the appeals process with my insurer/employer to get the approval, I had estimated the cost to be about $12,000. That was a little low, it turned out. We blew that and more on trying to collect some stem cells in February 2003 but my marrow was too beat up from the previous chemotherapy to produce enough of the little guys. So we waited until the marrow recovered, so we could try again. But by then, the bad guys were back too. So, we had to try some new stuff, a procedure that is used for folks with lymphomas. It’s an “in vivo purge,” which means we’re trying to eliminate most of the bad guys with chemotherapy and then trying to force the stem cells out into circulation so we can catch a few.

This is a much more expensive procedure. I was estimating about $30,000 for this, but the cost keeps going up. It’s costing almost $10,000 a day for my Rituxan treatments alone. I had no idea! It looks like this process is going to end up costing upwards of $60,000!

Now, if that’s not bad enough, consider something that I really haven’t mentioned so far. There really is no guarantee that we’ll even get enough good stem cells. We hope to, and we expect to, but we could be drilling a dry hole with all this stuff. I find it kind of embarrassing that we’re pouring so much money into my veins. Just like you do too, I’m sure, we get letters daily saying something to the effect that, “Your $1.50 will feed this family of four for a week in Uganda,” or something. I’m starting to think, “My God, we could feed the whole freaking village for a year, maybe the whole county, with what I’m using up.” I’m not trying to affect any false modesty, or anything, for I have plenty to be modest about, but this cost just seems incredible. Especially if you go back to my “What’s the point...” letter of a couple of weeks ago. This won’t cure me, it’ll just keep alive longer so I can use up yet more resources.

I guess I’ve used up more than enough of your time, if you’ve followed this stuff all the way to the end. This brings me to something that I’ve been wanting to add to my letters for quite a while. I have to suspect that my “mail list” has grown out of proportion to the number of folks who really have any interest in this interminable tale of woe. I suspect that a number of folks have gotten on the list for some reason or another... they’re a friend, relative, a friend of a friend, or whatever, but have long since lost interest. And I think this is perfectly okay. But I have no desire to continually “spam” folks who don’t care to get uninvited e-mails every few days to every few weeks.

So, if you’ve gotten this far into this letter and still want me to assault you with my stories, just hit the “reply” button or send me a message to the effect that you want to be on the list. If I don’t hear from you, I won’t take any offense at all. I’ll just stop bothering you, okay? And I won’t assume anything about anybody, so this means I want to hear from you too, Mom! If you want to get the letters, of course.

Until I hear from you....

Dave

For those of you who were wondering about the “pop test....” Remember, I’m not working and, “An idle mind is the devil’s workshop.”