Chemo Endstage, apparently

Where I left my work situation is that I started a four-week vacation this past Monday, which will carry me 1 1/2 weeks past my last scheduled chemo. I no longer feel the same confidence that my onco will take me off chemo at that point, which will make further work arrangements potentially more confusing yet, but we'll cross that when we get to it.

I am finding it harder to summon my mental processes to write coherently, and have been spending a lot of time in bed since Monday. The last two days it's been hard to nap with the temp so cold, and my appetite remains problematic, although my wife/caregiver has been doing yeomanlike duty to keep me fed and try to expand my stomach.

Her job has gotten harder in this time, and I am so grateful for her presence, love, strength, and skill at a job no one should ever have to do.

I finally got around to shaving off my hair last Wednesday. It feel good, and especially feels better than the piles of my hair in the bathroom, on my pillow, etc.

I hear from various sources that the last two chemo treatments are the worst, and leave the recipients even more ineffectual than usual, so while I hope to be able to make other coherent posts, this may be the last for awhile

Oops, check that - another bad week after all

The painful spot in my abdoment that's been there in greater or lesser degree from the beginning came back fairly intensely after my last treatment (the one two weeks ago), but I didn't think too much abut it until it started to get worse over last weekend. I went to work Monday, but put in a call to my oncologist; I heard back from one of the nurses.

Monday night, I had difficulty sleeping and twinges of pain on trying to move around; Tuesday morning, I could barely get out of bed, and tried to work from home until I started noticing some little errors of judgement that could presage more serious errors.

I put in another call to my onco and heard back from her about 4; after talking to me awhile, she recommended I start using the heavy pain pills they gave me some time back, as long as they were taking care of the pain. I kept myself medicated all the way through the night, and when I woke up on Wednesday, the pain was much better. However, as the day went on, I found that I was weak and needed to take naps.

I wound up staying home the rest of the week, had to take the heavy meds yesterday, and feel that I need to have a talk with my manager about going on short term disability.

Better this time

For anyone who was worried about my last entry, this current round of chemo has been a lot easier on me so far than the last was. I feel pretty much myself and back to normal emotionally; the only real problem is an extreme lack of appetite. As I type, I am at work brewing a cup of ginger tea in the hope it will make me feel like getting something substantial for lunch. Yesterday I went out and optimistically bought a turkey panini, but I only managed to choke down a couple of bites. (Of course, finding a store that sold ginger tea in the Lower Market area of San Francisco was a bit of a chore.) I'm hopeful that the ginger tea will help because I can definitely feel that my stomach is unpleasantly empty, it's just that filling it is something I have to force myself to do, and that only works so far.

Also, that same painful spot in my abdomen is back at a fairly painful level; I'm hoping it will taper off over time, but so far is showing no signs of doing so.

This appetite situation is especially annoying in light of the fact that we're having dinner with my hospital roommate and his wife tonight. He and I spent about 5 1/2 days in each other's company at a particular low spot in both our lives; we saw each other at our worst, but some of the best in each of us came through too, and I feel honored that he's chosen to stay in contact.

Tough week

Last week was hard - it took me a long time to start bouncing back from the chemo (the previous Thursday), a process which is still ongoing.

Saturday, the second day after chemo and my usual "bad" (no energy, lots of naps) day, I woke up with a pain in my side in about the same place as the one that sent me to the ER initially (see "Random Odd Pains" entry). The ones I've gotten previously were characterized by pain on inhaling fully; this one was painful both on full inhale and exhale. This limited my breathing to a narrower range than I'm accustomed to. I took some pain medication later in the day, but I had the same problem I did when they gave me pain meds in the hospital - since the pain was transient (at the upper or lower ends of my breathing range), I still felt the pain acutely, and all the meds did was to dull me, not the pain so much.

On Sunday, the pain was still there, but after I woke up from a nap, I sneezed, and that seemed to relieve the pain on exhaling - almost as if the pain had been an adhesion inside my chest. A shower later helped ease the inhale pain, but a touch of it is still with me.

Another thing that happened Saturday was a muscle spasm in my biceps/triceps area. I had this happen once before, in my calf, but I didn't connect it with chemo; I've since found that others report a higher-than-normal incidence of cramps and muscle spasms while going through chemo. My chiropractor was able to fix the calf spasm, and I saw him for the elbow on Saturday; the elbow is still slightly tense, but I'm hoping it will clear itself up.

Monday was a holiday, and by the time Tuesday came, I was OK to go back to work, but was still feeling low on vitality. On Wednesday, by the time I went home, I needed to take a nap, which is very rare since I came back to work. In general, it's felt like it's taking longer than usual to get back to feeling normal.

I'm approaching the end of my chemo regimen (three more treatmens), and wonder if this is an isolated incident or a sign that the chemo is having a cumulative effect on my body. I'm afraid common sense points to the "cumulative effect" explanation; if that's the case, I can comfort myself with knowing that I see the light at the end of the tunnel (depending, of course, on what my post-chemo evaluation shows).

Vitality

Each time I go in for chemotherapy, I have an appointment with the oncologist first, and one of the first questions she always asks me is "How's your energy level?"

It occurred to me the other day that there are a couple of different components to my energy level, at least as I perceive it. The first is simply gross energy, which has been admittedly short for me since before I went into the hospital (and as I've posted about before). The other is something I've come to call "vitality," and is characterized by mental energy, engagement with the world, eagerness to get out and face life.

I haven't had a chemo dose since I came to this realization, but I sort of suspect that it's my vitality that suffers when I have my bad day two days later, more than the gross energy level itself. I'll be paying attention next weekend (my next chemo is this Thursday).

Also, my vitality level has been pretty good overall. In December, I had lunch with a friend who had complained of how gloomy I was when we met in October, while I was still struggling with my symptoms and not knowing what was wrong with me. He told me I was doing much better than he thought I would be, and I'm pretty sure it was my vitality he was impressed by.

Miscellaneous update

Goodness, it's been awhile since my last entry.

In the meantime, I've been working towards my goal of not having my cancer be the focus of my life. It's still pretty hard to ignore the limitations on my energy level, which seems to fluctuate with the chemo cycle, the phases of the moon, and other unknown factors. My energy level is definitely not what I'm used to, but my endurance is generally pretty good, and I haven't had any problems to this point working full days.

My facial rash has improved dramatically. For awhile there, it was dark and angry enough to make my facial hair almost invisible (actually not a hard trick, I've never been very hairy), with lots of whiteheads everywhere; I got a prescription for the antibiotic (Minicin) most recommanded for acne, and since I ran through that (it ran out about a week and a half ago), the facial rash has looked more like a rash, with the occasional pimple. For awhile there, I was using moisturizing cream on a daily basis, now I don't really bother.

To balance that out, my oncologist tells me the rash has moved into my mouth. It's not severe, but it means that hot, sour and other flavors are exaggerated, and my tongue feels like it's been mildly burned all the time. It hasn't affected my sense of taste that much, other than to make my tastes annoyingly bland.

Keeping my weight up has been a problem. I've gone down by two pounds at each of my last two chemo appointments, and tend to get full on not a lot of food. I've tried to up my carb intake by having things like milkshakes and Jamba Juice during the day to compensate.

One of the main things that comes with achieving something like normalcy has been that the novelty has worn off, and while I'm far from being over the cancer, I'm definitely Over Having Cancer. Knowing what a long haul cancer usually is, I can't let myself get too burned out on it, but keeping track of what I should be taking and when certainly palls after awhile.

My night fevers and sweats have gone down dramatically, making my oncologist happy (which makes me happy), but the cough remains an issue. My primary doctor prescribed some nose drops recently (which I then conveyed to my oncologist), to be taken once a day, and when I take them at night, I can usually get by without coedine cough syrup until about noon, after which I usually have to take some. The last couple of days have been a bit better, I'm hoping that's a trend.

One of the great joys in my life is singing, and the cough has made that difficult. I've asked a couple of sources if there might be such a thing as music therapy for cancer patients - as a singer, I know that making music releases a tremendous amount of subtle energy, and it stands to reason that there ought to be some way to make therapeutic use of that. I've sadly neglected my singing in the past several years - the last time I did any singing on a regular basis was before I left BofA in 1998. I'd seriously consider finding a regular group to sing with, even now with my energy issues, if I felt confident I could avoid coughing.

That's about all for now, more as it occurs to me...

Chemo aftermath

I had my third round of chemotherapy last Wednesday, and after taking some precautions, it went pretty much as I expected:

Day 0 (day of the chemo itself):

Pretty uneventful. Some extra energy drain, a little nausea this time out (not during the administration of the drugs, but later).

Day 1:

Again, a little drained, but otherwise pretty normal, worked a full day, appetite OK. As precautionary measures, took a Compazine in the evening and an Ativan before going to bed.

Day 2:

OK when I first got up, but noticed lack of mental energy or ability to concentrate. Went back to be and slept about four hours, quiet the rest of the evening. Appetite OK.

Day 3:

Still somewhat lacking in energy, again needed a nap, but shorter. Experienced one of the more annoying side-effects I used to get when doing late-night or (especially) all-night activities for work - "anhedonia," the inability to take pleasure in anything (this was the original working title to Woody Allen's "Annie Hall").

Day 4:

More or less back to normal, although on this occasion I stayed lazy since it was raining with wind, thunder and lightning. I regretted not getting a little more exercise when I tried to go to sleep.

Since days 2, 3 and 4 pretty closely mirror what happened after my second round of chemo (although I didn't take the anti-nausea precautions the earlier time), I'm assuming this is pretty much how post-chemo will go in the future. I'm trying to adjust my schedule so I get my chemo on Thursdays, that way the bad days hit on weekends and don't interfere with work.