Previous Status Reports Here's the Latest... Sunday, September 13, 1998
Hi everyone! It's been nearly a month since my last update, so there's lots to fill you in on....As of last Thursday, I am officially half way done with chemo! Actually, I won't feel like I am really halfway done until the nastier effects of this latest chemo have worn off sufficiently, which probably won't be until sometime tomorrow afternoonish. While I'm very pleased to have reached this milestone, I must confess that contemplating another 6 treatments before me is not a pleasant thought.
The treatments are absolutely getting harder, and with my Neupogen shots keeping me on my two week schedule, the cumulative effects have been more noticeable than when I was getting a few three week reprieves here and there. The interesting thing about these effects is that they have changed somewhat over time, and some symptoms have actually improved, while others have worsened. The nausea and digestive problems that I was experiencing consistently for my first few treatments have actually become easier with
successive treatments. They have not gone away, but have certainly lessened in severity. However, the overall "feeling lousy" part has become significantly more difficult. This feeling lousy stuff is a bit hard to articulate, but consists mostly of feeling very weak,
somewhat woozy, and generally achy, headachy, and I guess flu-like for lack of a better description. I haven't even been able to keep up with my dog walks consistently on the worst days, though I do get a few in here and there. I sleep ten or more hours a night, which is a lot for me, and then sometimes nap some more during the day.Fortunately, we seem to have settled into a routine that works pretty well in and around treatments. The whole Neupogen shot thing took a little figuring out, but we've got it down now. At first, I was going into the Northampton Kaiser clinic every morning for ten
days after each treatment, to get my Neupogen shot, and was also getting my blood work done there. This approach turned out to be problematic for a number of reasons. First of all, it meant trucking up to the clinic every day (OK, so it's only a 10 minute drive, but
it still gets to be a drag every day!) Second of all, it meant sitting in a waiting room full of sick people, waiting to be taken in the back to be given my shot. Not the best idea when one is immuno-compromised. While the nurses and staff at the clinic were overall
really great, they are often overbooked, and though they tried hard to usher me in the back quickly after my arrival, I would often find myself reading most of a Reader's Digest before they got to me.Furthermore, when it came to getting my blood work done, there were some definite difficulties. Mostly they came in the form of Kaiser nurses being unfamiliar with taking blood out of a port-a-cath. Since my port has lately been a bit tempermental about
working properly, this led to all kinds of fun with the nurse sticking a needle in the port several times, flushing it out several more, still not getting any blood and so starting it all over again. The first time I went there for blood work, it took nearly an hour for them
to get any blood out, and then they only got less than a tube full before it stopped flowing. Fortunately, it was enough for the CBC test they needed to do, but only barely. Then came the difficulty of getting the results of the blood test, which aren't processed at the clinic, but at the local hospital. Well, I won't bore you any further with all the details. Let's just say it all got old really fast.When Shaz and I went to New York City a few weekends ago, Shaz was trained by the Kaiser nurses to give me my Neupogen shots so we could still go away. This went so smoothly that it didn't take us long to figure out that it was a heck of a lot easier to have Shaz give me the shots at home than have me go to Kaiser for them. So now we just go to Kaiser to get the prescription filled, and that's it. Shaz shoots me up at home, and I'm having future blood work done at Bay State. It may be a longer drive, but I get there, get taken in pretty quickly, get a nurse who could tap a port in her sleep, and get the results of the blood test right away if I'm willing to sit and wait 10 minutes for them to process it. Works for me!
Lately, the Neupogen has also been keeping my counts up in normal ranges, but not off the chart like it did during my first bout with it. Thus the bone pain problem has alleviated considerably, so one less nasty symptom to deal with. We did stop my shots at 9 rather than 10 last time around due to a bit of bone pain, and my counts were still at 5.1 just prior to chemo. A bit low for the average person, but more than good enough to get chemo. A few days before that my WBC had been at 10.3, so it did drop quite a bit, but at least it wasn't up in the stratosphere level of 41, like it was a few weeks ago! I think I'm going to start a graph of my blood counts, just for fun. I'll post in on my web site one of these days!
Well, the doc had told me that after two more treatments, I will be getting a full set of scans to check my status. This will probably mean a CT scan, a gallium scan, and another chest Xray. I will have completed 4 cycles (8 treatments) at that point, and have 2 more to go. The scans will give us a really clear picture of exactly how much the tumors have shrunk, so it should be an encouraging moment. I'm looking forward to having something concrete to show for my efforts. Beyond that, we figured out that my last chemo is scheduled for December 3rd, so this is a date that looms large in my mind these days. It seems so close, and yet so far.....!!
Carpe Diem
5:47 PM
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