24 Hour/Day Chemotherapy
- 02Apr07 - Today I was admitted (yeah, here we go again...) to the hospital for chemotherapy (the
24 hour/day variety). Just one problem: a fever of 102.4°F. Before anything else can
proceed, the fever has to go away. I was supposed to get a port this morning, and start chemo
later today or early tomorrow. Oh well.... I also have no voice...feels like congestion blocking
my vocal cords (i.e., putting pressure on them and keeping them from moving).
- 03Apr07 - still waiting on the fever to drop...but here's a nice new problem: severe pain, on a
scale I'd rather not think about right now. It's either a rib (towards the upper right) that's
been injured from all of the coughing, or more likely, just pain from the cancer in that area,
which is what I'm here for in the first place. Got hit by it this afternoon and tonight...but
tonight's was the worst...the nurse and I had a hard time getting that one to go away.
- 04Apr07 - new change: no port, PICC line instead. Once again, this afternoon, the pain went
through the roof again. This time, though, it was still worse (on a scale of 1–10, where
being kicked in the nuts is only a 3, this got all the way up to 11...I puked my lunch
right into the trash can (yeah, the pain was that severe). Pain medicine schedule changed to
compensate...and I'm making sure we stay ahead of this pain (keeping it down is a LOT
easier than having to KNOCK it BACK down (cf the American Cancer Society's
document on managing cancer pain (I can't remember the exact title—unless that *IS* the
exact title—right now, and can't go to the resource room to look it up).
And...I started the 24 hour/day chemo.
- 05Apr07 - still keeping on top of the meds to keep the pain in check.... Dr. H has a new
version for me for what's going on with my voice (and why, so shortly after chemo started, it's
coming back)...there's a nerve called the recurrent laryngeal nerve (no idea whether I spelled all
of that correctly) that starts at the larynx, loops down around the lungs—in the process,
passing a lymph node in the chest, and back up to the larynx. The lymph node was swollen because
of the cancer, and put pressure on the nerve, causing me to lose my voice. He indicated that that's
why it got better so quickly after starting chemo. My voice is about 50% back now.
- 06Apr07 - nausea and sleep...those are the primary words to describe today....and once again, I
got my brief one hour of freedom from my room (I'm not allowed to leave my room with chemo hooked
up to me, and once started, the chemo can't be interrupted). I'm definitely very protective about
that hour.... Also, my voice is back up to about 95% now...still a bit rough, but not bad.
- 07Apr07 - still trying to get more info on the various meds I'm on (well, the chemo and related,
anyways...the rest fall far more into the medical/privacy act side, IMHO, so they mostly stay
out of here). Right now, I can tell you that VIP chemo is short for Vinblastine, IFEX (plus
Mesna), and Cisplatin (one if its alternate names begins with a 'P'). IFEX, from what I read,
WILL damage the bladder without the Mesna being given right along with it. The Mesna is
specifically to protect the bladder. Spent about 90% of today dozing/sleeping.
- 08Apr07 - the current bag of chemo that's hanging is the last for this cycle (YEAH!). After that,
they hang a bag of just Mesna for more protection for my bladder. My voice is back to 100%. And
the doctor just corrected himself...this is the 4th bag, not the 5th (I could have told him that),
so it looks like I'm getting out on Tuesday, not Monday...just like I've been expecting all along.
- 10Apr07 - Ok, make that Wednesday (i.e., going home), not Tuesday....
- 11Apr07–17Apr07 - summary: sick, nauseous, weak, and tired...to extremes...far too sick to
do any updates here (I barely managed to check my e-mail for the first half of this time).
- 25Apr07 - Swell...I'm back in the hospital for the second cycle of 23 hour/day VIP chemo.
The staff here does everything they can to make it it as comfortable as possible, but chemo is chemo,
and there's only so much anyone can possibly do.... Cool new development...the hospital now has a
router/hub connected to the outside (Cox) network connection for patients...so I'm able to ftp these
updates direct from my laptop...no more messing around with USB drives, limited capabilities on the
hospital computer (I use WS-FTP on my laptop, which, functionally—ignoring the fact that it's
a graphics-based program, is as close to the text-based ncftp I have under Unix, which allows things
like transferring entire directory trees in either direction, as well as much easier transfer of
multiple files from a single directory...all very useful when doing large updates!).
- 26Apr07 - Well, yesterday went fairly well...nausea started to kick in earlier than it did during
the first cycle (no surprise there), but they have medicines for that...it's just after 0530 as I
type this bit, and I'm just sitting here listening to music (Arjen Anthony Lucassen's Star One,
Space Metal...and before that, Floor Jansen's group, After Forever, Invisible Circles,
both progressive-metal bands). (Oh, cool...one of my favorite songs from Space Metal...
The Eye of Ra—a tribute to the movie, Stargate—just started...time to
crank the volume for a bit.)
- 05Jun07 - Sorry for the lack of updates...it's been a long, cyclic pattern: in the hospital for
chemotherapy, out of the hospital for misery (nausea, severe stomach cramps, muscle spasms and
cramps in both my legs and my arms, weakness), back into the hospital for fever plus neutropenia
(severely reduced immune system), back out of the hospital for a few days, and finally back into
the hospital to start it all over again with more chemo. As I type this, I'm laying in my hospital
bed, laying under two blankets because I'm anemic and, therefore, very cold (I'm supposed to be
getting a blood transfusion in a bit), not to mention the fact that I'm neutropenic and have had a
more or less steady fever since last night.
- 26Jul07 - Catching up.... Things have calmed down rather a lot since the final cycle of chemo/severe
pain/neutropenia finished up...but it's what happened during that last cycle that I want to make sure
is included here. During the first three cycles, I went through SEVERE pain for about a week
or so following each round of chemotherapy. Not knowing any better, and not having anyone else
around who knew any better, I went through the pain alone, in my living room. It was far, far more
than I could tolerate—it just didn't go away (it did, however, get worse at times). I spent
every moment of the nightmare wondering just how I was going to make it until the next moment. It
took every last bit of strength I had to get through each minute. The doctors gave me the impression
that they knew what I was going through, and that it was just something I'd have to get through.
(I now know that when I talked about being in extreme pain, nobody but me really had any
idea...instead of hearing what I said, they were all still hearing the lies my dad told over a year
ago, saying that I wasn't really sick after that chemo, that I was just exaggerating and too lazy to
get up and work on the farm right after getting home from chemo, etc....)
Things changed, however, during the fourth and final cycle of chemotherapy...the right combination of circumstances pulled together.... First, my mom was in town...and she knew better than to listen to what my dad had said (she's been on the receiving end of his hateful remarks for a lot longer than I have). Second, while I was at the doctor's office for a shot, the nurse saw me react when one of the painful spasms hit. I can't remember what she said regarding the pain, but my mom made a comment to the effect that nobody seemed to be listening to me about it, but rather, seemed only to be listening to the lies. Before the nurse said anything, the look in her eyes told me she was about to fix that (and then she said as much out loud). She immediately left the room, with a look of determination that made me glad I wasn't going to be on the receiving end of what she was about to say. The next thing I knew, one of my oncologists was telling me to go straight to the ER if the pain got too bad. That night, it did...and my mom drove me to the ER (there's no way I could have driven at the time).
At The ER (and beyond)....
When I got to the ER, the pain had calmed down a bit, but apparently only I saw that change. The doctor, even then, described my pain as "severe". They put me on and IV of Demerol (sp?) immediately, and I passed out (I was already very tired—only the pain had been keeping me awake). When my oncologist arrived later that night (or was it the next morning?), he told me he was changing me over to straight morphine for the pain, due to Demerol's risks, which included the possibility of seizures. I was shocked at the idea of being put on straight morphine, after having heard about how highly addictive it is, but the doctors and nurses managed the dosage very carefully to keep the pain down during the following week without getting me addicted.
Now, here's the real shocker...something that gives a very clear description (much better than I could put into words) of the pain I was in that whole time before (particularly the first three cycles, when I had to deal with it unaided).... One of the nurses, who saw the pain I was in, told me that it was on the same level as, and possibly even worse than, the pain experienced by a woman in labor. Imagine that pain, and having to endure it for a week straight. That's what I went through...thanks to lies told to the doctors over a year ago causing a breakdown in communications.
Lesson learned: Never accept that pain like that is just "expected" and that you have to put up with it...if you're not already well-prepared for the pain (adequate pain meds on-hand), it isn't expected...and either way, you don't have to "just accept" pain like that. The ER is there for a reason, and pain on that level is a more-than-justifiable trip to the ER.
So with that, there should only be one more entry left regarding the last batch of chemo, and that's the results, which we won't know until I'm scheduled for a CT scan, and I don't know when that will be at this point. What I DO know is that my tumor markers are all back down to normal (they were after the third of the four chemo cycles), and that's a very good sign. Hopefully, this will be the end of any new cancer growth for a long time...that will leave me clear to recover from the last few months of chemotherapy....
- 12May08 - There hasn't been much to put in here that would be worth the time...until now.
Thursday (08May08), I went through a BIG series of CT scans, including basically everything
from the brain to the pelvis, and an MRI of the brain. All of that contrast they injected me with
kept me sick through Sunday morning, but that's another story. The important bit is the results
I got today.....
Basically, all of the scans came up clean. The cancer is in remission. Now, that doesn't mean it can't still come back, but it is a VERY good sign! Even more, going by the timing of previous returns of the cancer, by this point, had the trend continued, I would be heading back for more chemo (and given the headaches I've been having—all starting from the brain surgery incision sites—and the painful swallowing—probably allergy-related, but...anyways, we were kind of dreading the results...I certainly was!)...but instead, the cycle appears to have been either broken, or, at the very least, smacked really hard. In two months, I go back to the doctor's office to get my port flushed. Two months after that, I go back to see the doctor. It'll probably be another two months before I get any additional tests done.
