Wednesday, March 3, 2004

Finally, the Cytoxan and Associated Adventures!

Dave’s Great Adventure, Book 2
Chapter 2, Verse 7
March 3, 2004
Cytoxan, ... finally.

March 1st came around, and we went back to the clinic. My chest was feeling fine. It was the day I’d been anxiously awaiting and at the same time, in some ways, dreading. I needed to get past this date to get anything done, but I expected some bad days after they give me the Cytoxan. Remember what that is? Cytoxan = “Cyto”= cell and “toxin”= poison. They’re going to give me cell killer! As our daughter asked, “Why are you so anxious to get that stuff that’s going to make you feel like crap?”

Kathy I went in, early, of course, and checked in. At least we didn’t beat the staff in this time. Our nurse was Poppy, a real nice gal in her early thirties who exuded the air of someone who knew exactly what she was doing. I appreciated that. She didn’t even wait for the doc to come around and check me out, so well was I doing as compared to the previous Friday when we had met and I was still coughing and wheezing. She told me what we were going to do, gave me a list of Cytoxan side effects to look over (sinus congestion, nausea and vomiting, delayed nausea and vomiting, esophagitis, diarrhea, alopecia [baldness], pancytopenia [loss of adequate blood cells off all types, needing transfusions, etc.], hemorrhagic cystitis [bloody urine], cardiotoxicity which may decrease the heart's ability to pump blood, reproductive dysfunction [no longer a worry around these parts], and pulmonary fibrosis, which is a disease which has killed two of my cousins on my Mom's side. Yee Hah! Let the good times roll!) and started.

Let me spend a moment telling you about how much Cytoxan they’re giving me this time. Long time readers of this series may remember that I have had this drug before, when I was getting my first rounds of chemotherapy from July to October 2002, and that I was wiped out for days with “the fuzzies,” etc., when I couldn‘t think, do much, and just lay (or lie?) around the house for days. Well, back then, they were giving me 750mg (3/4 of a gram) a day, for three days in a row, with a couple of other meds too. Now they're giving me almost 6 grams of the stuff all at once, about eight times as much as I have ever gotten in a day, and about three times as much as I’ve ever gotten in any one week before. Man, they’re really going to pound away at my marrow this time!

But before they started it, they gave me another drug that I hadn’t had before. They infused some Mesna, a “cytoprotective” drug. I don’t know how it works, but it’s supposed to protect my vital organs from the Cytoxan somehow. That could be a good thing, protecting my vital organs before we loose the Cytological Grim Reaper, swinging a very large scythe, cutting down the good and bad guys all at once.

Then it started. It’s looks so benign. Many of the poisons we give to people have nasty, ominous colors. Yellows, reds, off-colors. Cytoxan, just like the Rituxan, the saline, the steroids and the Anzemet, were all just clear fluids. You couldn’t tell one from the other in the various tubes which were draining into my chest. The infusion took two hours. I was feeling bad before it was over...”woozy,” I told Kathy. I was unsteady when I got up to go to the bathroom and I couldn’t focus well. But, I didn’t feel at all nauseated. I was happy about that because I HATE to throw up! I was getting a headache, though, supposedly from the Anzemet (the antinausea medication). After the infusion came two more hours of hydration to help keep my kidneys flushed and minimize damage to them.

Now, initially, I was told I would be admitted to the hospital overnight to continue the hydration for 24 hours. Then, that was changed to having a home health nurse come out to manage IV’s for me at home. Then, that was changed to me going home with what is actually a backpack with a pump, batteries, and bags of fluids to use at home. Hey, don’t you love HMOs? However, I have to admit that I liked the backpack idea better than going to the hospital or having a nurse come to the house. The latter would have required a major house cleaning!

So they hooked me up to this backpack, which also has a handle so you can carry it like a briefcase if you want to, which I did, and put in the biggest bag of IV fluids I think I’ve ever seen, 2 1/2 liters. It looked more like an enema bag or something. And that was just the first of two IV bags we took home with us. The pump inside pumped the fluids out of the bag and into the tubing and then up under my shirt into my chest. A bit awkward, but manageable. The backpack also had another little pump, a little round spring loaded pump about the size of a Big Mac which contained more Mesna, to keep an infusion of it going during the night too. I liked that too, but wondered, “What if the spring breaks, or gets jammed, or something?”

We got home okay, and I headed straight for the couch. Kathy fixed a small meal, but I couldn’t each much, not from nausea but just from fatigue. I finally went upstairs to try to get some sleep at about nine. I wasn’t being much fun anyway!

Sleeping presented a problem. I was attached to a backpack by about five feet of tubing which was attached to the right side of my chest. We decided my best bet was to try to sleep in the recliner for the night. That would also put me much closer to the bathroom if I were to have problems during the night. So I did. But soon, the pump started beeping at me. Some kind of code I didn’t understand. “Beep, Beep Beep.” Then, “Beep Beep, Beep.” Then, “Beep Beep Beep, Beep.” I dragged myself into the bathroom, turned on the light, opened the backpack and looked for error messages or something. I couldn’t find a problem, so I put the damned thing back together (really an awkward thing to do when you're tired and inexperienced with the mechanism). I crawled back in the recliner and tried to get my headache to go away. I didn't know what medications I could safely take with the Cytoxan on board so I was being more cautious with meds than I usually am.

Things really broke loose at about midnight! The pump began making alarming beeps continuously. I again got up, went into the bathroom and turned on the light. I sat on the floor and disassembled the backpack to get at the pump. This time it said the battery was low. Well, they had provided about a half dozen more batteries with the pack, so I proceeded to replace the bad one, not too much of a problem. But when I got it replaced, the pump then said my fluids were low. Sure enough, the huge 2 1/2 liter bag was down to about 50cc. Problem! The replacement bag was downstairs and I had the backpack and tubing all in pieces. I called to Kathy, several times, actually, as she was sound asleep. But when she woke, she saw me in the bathroom with pump and bag parts scattered all round me and thought disaster had struck and she came running. I told her nothing serious was happening, but I needed the second bag brought up. We were then sitting on the floor, trying to figure out how to get the second bag threaded through the pump when the next problem hit.

I had to throw up. Suddenly, without warning, in less time than it has taken you to read this, I had to throw up. But, I had the replacement bag of fluids in my hand, the bag was opened with the pump on the floor, still attached to my chest by my tubing, and the backpack was in front of me, all of it interconnected. And all this stuff was between me and the toilet! I madly clambered over all the bags, tubing and equipment, towards the toilet, dragging all the stuff by my chest tubing. Ouch! I almost made it. Actually I made it for most of the event, but I couldn’t crawl fast enough to reach the toilet for the first “burst,” if you will. And, there, I vomited from my toes. And this kept on, until there was nothing left. (I’ll spare you any more vomit details)

When it was over, Kathy helped me clean up, both myself and the floor, but we still hadn’t replaced the bag of fluids. With a little effort, through chemo impaired and sleep deprived minds, we finally got it figured out and got me back into the recliner. The rest of the night was, thankfully, uneventful. Not restful, but uneventful, as Kathy and I both kept listening for the quiet “grunch-grunch” sound of the pump every couple of seconds, to make sure it was working, and to make sure we didn’t sleep through any frantic beeping!

We had to be back at the clinic the next morning by nine, so we got up, very slowly, at seven. On the way back downtown the battery needed to be replaced again; no problem this time. When I got there, Poppy looked at me and said, “Bad night, huh?” She could tell. I was weighed, and had gained nine pounds overnight; the effect of steroids and continuous fluid infusions. They put me in a room, gave me some Ativan (the sleep stuff) and I took a nap for an hour or so. Meanwhile they disconnected all the tubing, flushed my lines and cleaned up the insertion site. After a while, we went home and Kathy and I both took a nap. I’m happy to tell you that there has been no more nausea, though the other end of my digestive tract has begun to act up, as I was warned it might. I’ve been hitting the Pepto and Imodium quite a bit.

And now it’s Wednesday. I’m extremely tired. And this is supposed to be a “good” day. I’m not supposed to get wiped out, according to my nurses, until the next day or two. Last night, though I wasn’t drinking anything during the night, I had to get up every couple of hours to pee, still getting rid of all the fluids I had accumulated during the previous couple of days. So this morning, I got up, ate breakfast, and went back to the couch to lay or lie down for the rest of the morning. (Our friend Kent, from Lubbock provided me with this rule about laying and lying: “For the record: I (do) lie down; I lay down; l have/had lain down. I (do) lay the frammis on the portico; I laid the frammis on the portico; I have/had laid the frammis on the portico. Your usage in your e-mail was correct. Thus spake Zarathustra, the arbiter of all English usage.” The “frammis” is an old, long running joke about an imaginary home-building part).

After the Cytoxan, a lot of things are going to happen to me, and I’m not likely to be a happy person for a while. When I had the Cytoxan in the past, many of you may remember me writing about having the “fuzzies,” times when I really couldn’t think well, read, type, etc. All I wanted to do, for days at a time, was lie around the house and sleep. Since I’m going to be getting a big walloping dose this time, it’s likely to be worse and last longer. Plus, I was lucky enough to escape nausea last time. I wasn’t so lucky this time. My doc said I may not even have any nausea, and then gave me enough nausea pills, at $10 each for three weeks! Now, what’s that telling you?

Then, the drugs are going to severely depress my white cell counts, hopefully taking all the “bad guys” with them. But, that’s going to make me very susceptible to infections, even from the germs within my body. I’ll have to be on antibiotics again for at least a couple of weeks or so. During that time, Kathy and I are going to “hibernate” within the house. I’ll not be going out where I might be exposed to anyone who might be sick, and Kathy, likewise, will be staying in so as not to bring any new germs into the house. Kathy stocked up the pantry just a few days ago so she wouldn’t have to go out much during that time.

And, as if that's not enough, I’ll have to start giving myself shots of a drug, the Neupogen some of you may remember, to stimulate the growth of my white cells again. I’ll have to do that everyday. I did that last year when we first tried to collect my stem cells, and the side effects weren’t too bad. I did have chest pain, in my sternum, and felt weakened, but not too extremely so. But, now that I presumably have some stem cells that can replicate, I will likely get the side effects, which can be bone pain, flu-like feelings, low grade fever, etc.

So, I’m likely to simultaneously have nausea, bone pain, weakness, “the fuzzies,” loss of appetite, and a significantly depressed immune system which will be susceptible to lots of other infections for a week or so. Does that sound like a good time? Of course, it’s not supposed to be a good time, and lots of you out there, and millions of other folks in the world have gone through much worse times, for longer periods of times, too.

I’ve decided that after we’ve finished the stem cell collection and it’s safe for me to get out, and I get some strength back, I’m going to take Kathy to a B&B for some R&R for a few days. We could rest in the house, to be sure, but that wouldn’t be a rest for Kathy, who would still be waiting on me and taking care of all the chores. She never lets me do much of anything while I’m recovering from chemotherapy. She spoils me! If I’m strong enough to travel, we’re planning to go back to the wonderful Alaska Wolfhouse B&B in Juneau for a few days, the place where we stayed last summer, with Phil and Clovis Dennis (who write that they have had their own interesting experiences with leaking water heaters). They are wonderful and hospitable folks and we had hoped to be able to visit with them again in the future, but they’re retiring from the business next summer. So, we need to go sooner rather than later. And this will provide a perfect reason, presuming I’m strong enough and my white cells are adequate for me to travel. Phil is a retired psychologist and is a lot of fun to talk to. He says a lot of folks tell him that a stay in the Wolfhouse provides Bed, Breakfast and Counseling! Another sub-text to this trip is that I want to see the Northern Lights at some time in my life. I wasn’t able to see any Southern Lights during our recent sojourn into the Antarctic, but March is supposed to be a good time in the northern hemisphere. Maybe we’ll be able to see some interesting things in the sky.

That's more than enough for now. I’ll close this edition, but let you know that something special is coming next time, whenever that is (depends on my mental state!).

Until then,