Monday, April 4, 2011

Hello Again, High-Dose; Big Changes

I knew what I was getting myself into when I agreed to go back on high-dose chemo. The vomiting, the neutropenia, the fatigue, the feeling as if I'd been hit by a Mack truck, etc. The thing is, it had gotten to a point where we needed to do something drastic to get everything back under control.

We decided to do a few rounds of a high-dose regimen, since we knew it (high-dose) had worked well in the past, and to pair it with a round of radiation to my skull.

I'm now facing an upcoming third round of the chemo, which will be followed by scans and, I hope, a celebration and transition to something less severe. The fact of the matter is, though, that I feel a hell of a lot better than I did before we started this high-dose. The treatment seems to have worked well on my head, as my headaches have, for the most part, disappeared, if only for the moment. My pain is diminished, and I'd love to keep it where it is. Obviously, in an ideal world, it would get even better, but as long as it's where it is, I'll be happy with it staying put, as long as it doesn't get worse.

I hadn't forgotten what high-dose chemo feels like. I don't think it's something anyone can forget, and I'm pretty sure I've said that before. But this time, my doctor agreed to do it outpatient, with pre- and post-hydration administered by my beautiful, wonderful (at-the-time-) girlfriend Laci.

The difference between this and the last time I was going through high-dose chemo is that the last time, I thought my only option was to allow my life to consist of receiving chemo and recovering from it. If I were smart, that would still be my only option. Nevertheless, I'm determined to keep my job, keep singing in the band, and enjoy this wondrous city in which I live, all while going through high-dose chemo. I know, I know, I can't push myself too hard. I really am trying not to, but I'm also determined to continue living my life. I've already given it away for so long.

So, for this radiation treatment, since it was being aimed at my skull (my forehead and top of head are, at the moment, about 3 different colors and peeling like a snake changing outfits), I was required to take a particular steroid of which I had some not-so-fond memories during the original chemo. In fact, during that chemo, I made the executive decision (without consulting anyone, no less) to abandon it and just deal with a little more nausea once it (the steroid) had become too much for me to handle. Small price to pay, I know, but imagine violent bursts of anger, sudden emotional breakdowns and inconsolable grief, and having a heartbeat that is so forceful that it makes it impossible to ever relax. I was on edge for this entire round of radiation treatment.

The doctors told me to "taper off" the drug after the end of radiation. In other words, not to go "cold turkey" with them, because that could be dangerous. And, by the end of the treatment, after a few weeks of feeling like the Incredible Hulk meets (insert any baby who cries a lot), I couldn't wait to be off of this drug. I tapered it over the course of four or five days, as directed, but I don't think that was enough time.

I woke up two days later, two days before one of the biggest shows my band has done, with a fever of 102.

The first assumption was that I was neutropenic from the chemo, so when I got to the hospital and they took my blood counts, the doctors all guessed that my counts were dropping rather than improving, which they really were, in actuality. But a day and a half in the hospital left me aggravated (with the hospital, of course), without answers (they couldn't find anything to cause the fever), and anxious to go home, though I was taking with me a low-grade fever.

Of course, my low-grade fever stayed for the weekend, and decided to turn into another 102 last Monday morning, sending me to the hospital, yet again, on a work day.

Radiation had caused some small bumps on my head, which we thought were just a reaction to the rays, which they may have been, but I also developed these spots all over my head and neck. Conveniently, they had spread to my back and belly this very same day.

So we went to see dermatology after our trip to the clinic, where, of course, my fever had disappeared upon arrival, which resulted in being told to monitor the situation, but nothing was to be done at the moment. However, at dermatology, I had one of those spots biopsied, and it turns out I should be calling them "pox." It seems that somehow, even though I had the Chicken Pox when I was little, my low white count made me susceptible to them again, and here I am adding 3 considerably large pills to my already-comprehensive daily pill menu.

I mean, come on. Really? Steroid withdrawal, so we're talking nausea, vomiting, temperatures fluctuating from 96 to 102 degrees, and I get the Chicken Pox, which I've already had!? I swear, this must be somebody's sick joke. Whoever's holding my strings up there while I dance around down here has a very sick sense of humor.

Approaching round number two, I knew I had to do my very best to stay out of the hospital. My band's show was scheduled for the Friday night ten days after the chemo infusion. I knew going into it that the timing was about the worst it could possibly be, and we should never have booked the show for that date, but that's a whole other story that I will not be getting into. Anyway, so I'm planning for a blood infusion to boost my energy before the show, and I'm taking the pills and avoiding contact, and doing everything in my power to stay healthy, avoid neutropenia, and of course, to avoid the hospital.

Four days before the show, I woke up with a sore throat. It wasn't terrible, so I figured it was a change-of-seasons thing; something I'd seen before, but was nothing to worry about. I often wake up with a sore throat that goes away over the course of a day, and I think that's pretty common.

Three days before the show, I woke up with laryngitis-like symptoms, except mine, in addition to painful swallowing and a lack of voice, were accompanied by white spots on the back of my throat. Easy diagnosis for my doctor; it was Thrush. Thrush is a fungal infection that happens to people during chemo, but can be prevented by taking an anti-fungal medication. I had been on this medication during the first fourteen rounds of high-dose, and had wondered why I wasn't on it during this regimen, especially because it goes along with the steroid and the radiation I was also doing.

"A minor oversight," they called it.

Well, the minor oversight, along with fever, cost me my show that Friday night, and my voice is still only about halfway recovered. There are inevitably a few times a day when I sound like I'm going through puberty.

You can probably guess that I was just a little bit pissed off about missing that show. Getting up there on the mic is one of my escapes from this stuff, and a "minor oversight," one that could have been avoided if I had been taking the drugs I was supposed to be taking, kept me from it. Forgive me if I have trouble seeing it as a "minor oversight."

The gig turned out great for the band, though. They managed the show without me, though we promised to never do a show without a member again, and the show went reasonably well. It seems to have opened some doors for us, which is great. My only concern was that we keep the wheels from falling off, but it turns out we're going in the right direction.

Going in the right direction. It's all we can ask for, right? I've ceased to believe that hospitals can run smoothly; there are just too many ways to fall in between the cracks.

They put me in an isolation room today to avoid exposing the other children to my Chicken Pox, which I understand, and I'll never complain about privacy, but they forgot me in there for an hour! All I wanted was to have blood drawn and get out of there!

I don't know if I'll ever be able to accept the amount of time I spend in that place as part of my life, but there are so many other parts of my life, it's tough to complain.

You may have noticed above that I mentioned my (at-the-time-) girlfriend Laci. Well, the at-the-time part of it was not because we are no longer together. In fact, quite the opposite. I proposed a little over a week ago. And, while I was unaware that wedding planning began immediately, and I mean immediately, after an accepted proposal, I have been incredibly happy. The smile on my face right now is so big that it kind of hurts, and she's just sitting next to me, unaware of anything I'm saying.

What I'm saying is that I will, we will, have everything. She gives me that.

Around our one-year anniversary (we're not exactly sure when it is), I told her that a year ago I met an angel, and that I somehow managed to keep her around. I meant that. I think that if someone can make you feel so loved, and makes you feel those things you didn't know were possible to feel in this world, then that person might as well be an angel.

Laci is also very perceptive. I may not have done the best job of hiding it (the man who sold me the ring stopped by the apartment to let me pick out the setting when Laci was home {he was a family member, not just some guy I met in the diamond district whom I invited over for candy and cake, mind you}). Laci also knew I was trying to coordinate a night to see her parents to talk about it before I popped the question, which I did. Talk to her parents, that is. I also popped the question. She said "yes." I didn't care that she knew I was eventually going to do it, or that I had a ring hidden somewhere in the apartment. I liked making her squirm about it. All I cared was that she said "yes" whenever I did ask her.

I guess feeling like we're going in the right direction is all we can really ask for. Going in the wrong direction is obviously scary, and complacency rarely makes us happy. It can mean so many things to different people, so I guess it's important to examine even small aspects of our lives and try to make them better. One day at a time.