Words Like Locusts Flew From Her Fingers

Eaten by Langoliers

It kind of blows my mind that it’s already October 12th. Where the hell did September go? In our house whenever someone asks “Where did the time go?” We always answer, “The Langoliers ate it.” (We’re big Stephen King fans at our house.) Well, the Langoliers really chomped down on the last month and a half because I don’t remember much of it going by.

I had chemo a week ago Monday and I’ve been having a surprisingly good time of it since then. “Bad week” was barely bad. I didn’t have any break-through nausea at all and what diarrhea I had was easily controlled. I feel fatigued and my hair is falling out, but other than that I feel pretty okay. Not great — but not bad, either.

The thing with my hair…sigh. It’s definitely thinning. Every time I brush my hair, I have a much bigger clump than usual to clean out of the brush. Also, it’s just falling out all over me pretty much all the time now. I don’t have any bare patches or anything like that, but it’s thinner and looks like of scraggly. My kind of chemo isn’t supposed to make all my hair fall out — but it’s not uncommon for this level of hair loss, so… I guess, as usual, I thought I might somehow be exempt from this side effect.

This week, “good week” has been better than usual too. Though, as I said before, I am fatigued and have very little energy for doing things.

What else is happening in my life that might be noteworthy? Orchestra and flute choir rehearsals are going well. The little dog is as barky as ever. Life goes on pretty much as usual. My friend Carol has started radiation treatments for her breast cancer. Five days a week for 6 and a half weeks. Yikes. She says that, so far, it doesn’t hurt though, so… that’s good. I don’t know if I’ve mentioned that Carol and David (her husband, retired) and I get together a couple of times a week to watch episodes of The Sopranos on DVD. They’d never seen the series and I suggested that since we’re all going to be sitting around the house a lot, we might as well do something fun with part of the time. We’re at the end of Season 3 right now. Lots of good stuff coming up. (I’ve seen it all before.)

I’ve actually been spending a LOT of time watching television. Not so much regular broadcast stuff, but stuff on Hulu Plus or Netflix streaming. I re-watched all of “Enterprise” over the past few weeks. Yesterday I watched a documentary about the Amish (though I slept through part of it), another documentary about the Vatican, and part 1 of Ken Burns documentary about Prohibition. I watched all of the episodes of Breaking Bad on Netflix or on “Video on Demand” (great show) and I’m thinking about watching that Terra Nova show — though I have to admit it looks pretty stupid. If it is, I will not watch. I’ve got better options than to watch stupid TV shows. (Several more documentaries in my Netflix queue, for example.)

Anyway… I guess that’s about it from here. Still got cancer — my CEA level (a tumor marker) had doubled on my last test. Still doing chemo. I’ve got a CT scan scheduled for 10/25 and that ought to produce some interesting results.

Bad Week – Good Week

Well… it’s been an unpleasant week, but I’m feeling reasonably good this morning so I’m going to be optimistic and say I’m on the way to beginning Good Week.

For those who are following along with my lament, my tale of woe, my nearly continual whining… I had a chemo treatment this past Monday. This time they added Avastin to my FOLFOX regimen and I’ll have that now for the duration. (Uh, maybe. More on that later.) Not surprisingly, my side effects were worse. I had a headache for a day and a half (that’s from the Avastin) and diarrhea for more days that was a bit more difficult to control. (Hurray for Imodium!) The nausea was also somewhat more persistent. It’s somewhat controlled with a combination of Compazine and Lorazepam, but those are pretty sedating drugs — thus my near disappearance from online. Also, a weird side effect of Avastin, the backs of my calves were sore like I’d been on a long hard hike. That lasted a couple days. Apparently, it’s an electrolyte thing and I need to be sure to eat bananas and drink lots of orange juice. (Easier said than done when your appetite is pretty much zero.) On the up side, I drank more water during the early days of the week (before I started to feel worse) and that did really help with the pain in my salivary glands. So… drink more water. Check.

Anyway… I was mentioning about how long I’ll be having chemo of various sorts. MY understanding, from discussion with my surgeon, was that I’d have just six treatments (with Avastin being added on the 3rd cycle) and that then I’d be done with EVERYTHING for the 6-week washout period prior to my next surgery. My oncologist, on the other hand, is talking about just stopping the Avastin, but continuing with the FOLFOX right up to surgery. I have written to my surgeon requesting clarification. I really REALLY hope I get to quit after six. I will, of course, do whatever’s best for me medically, but I’m starting to feel like a real whiny crybaby about this whole chemo thing. I thought I was more stoic than this. Apparently not. I suppose it will all depend on what my next CT scan reveals (on October 25th).

So, that’s what’s happening with me. Hopefully, I’m starting Good Week now — and, if so, I’m going to try to get a lot done. (Bad Week is pretty much just a lot of laying around the house whimpering.)

Oh, hey… one good thing did come out of Bad Week, though! I discovered the TV show “Breaking Bad” and have been watching episodes on Netflix streaming. Great show!

Looking Good! Feeling Good!

Well, I guess I should leave it to all of you to determine whether the “looking good” part of that is accurate. A neighbor who I don’t see often mentioned this morning, “Wow… you’ve lost a lot of weight, haven’t you?” Indeed, I have lost 25 pounds since April — and not in the healthiest of ways, but hey — it’s not like I didn’t need to lose weight anyway. I say: go with it. On the flips side, I am definitely feeling good and that is quite a nice thing. Starting yesterday, I have entered “good week” territory. Yay! Hurray for “good week”!

This morning I weeded my neighbor’s garden, moved a couple of cinderblocks that were in their front yard into their garage, and took down a plant hanger that had been hanging empty on their front porch for a couple weeks. Earlier I took Strider in for his grooming appointment and he now looks like a right Bedlington.

Rehearsals on Wednesday and Thursday night went well. The way I see this all working out is that I practice a LOT during the good weeks to make up for the less practice and less neurological acuity on the bad weeks. Happily, I think all of my concerts (that I’m committed to at this point) fall during good weeks or at the very end of bad weeks — which are, themselves, almost good. I don’t have orchestra rehearsal next week (which will be a bad week) because it’s going to be just strings. This works out quite nicely for me. I do have flute choir rehearsal, but I’m not as concerned about potentially making a fool of myself there as at orchestra rehearsal. So…

Anyway. Good week. Yay! I’m currently out on the deck with my laptop and a large glass of bright orange soda. You know if you drink that stuff with your eyes closed, it doesn’t really even taste like oranges. It’s just sweet and extremely carbonated. I think I shall make a quiche this afternoon.

Too Much Information by a Factor of at Least 10

So, today and yesterday are days 5 and 6 of chemo cycle 2, and if you look back to what was happening on those days last time, the same sort of excitement is going on — only I think more on the diarrhea side of things. I took some Immodium this afternoon, and that seems to have done the trick. I suspect that, were I not so chronically constipated, I’d have “noticed” the diarrhea a day or two earlier. I guess, in a weird sort of way, maybe the diarrhea is working for me. Ever the optimist, that’s me.

I seem to be running through the side effects somewhat faster this time around. This is good.

I got hit harder with the neurological stuff this time, for sure. Even the relatively mild coolness of my flute keys is enough to send shooting electrical pains up my fingers. I’ve also got this weird neuro thing having to do with the salivary glands in the back corners of my mouth. The first bite or two of any food creates very unpleasant cramping shooting electrical pains in those corners. It’s only after I’ve had several bites and the saliva is flowing that the pain stops. I get a similar thing with my tear ducts. Happily, all of these electrical/neurological side effects are starting to fade (until next time.) So… yay.

I did have an interesting experience with eating an ice cream cone last night, though. The cold of the ice cream created a sensation in my mouth like it was somehow highly carbonated. Kind of that sharp “ping ping ping” sensation you get in your mouth when you drink something with too much carbonation. It was very weird. Not painful, though. (A couple days earlier, it would have been impossibly painful.) Weird shit, I’m telling you.

Cycle 2, Day 2

Yesterday’s chemo was uneventful. As before, the whole procedure took around 4 hours. Also as before, I’m now hooked up to the portable chemo pump for administration of the 5FU drug over 46 hours.

I’m feeling pretty good, actually. Not as zoomy or as overly-emotional as Day 2 of the last cycle. I don’t know why that would be, but I’m not complaining. I do have a bit more cold-sensitivity this time around than last and this doesn’t surprise me because I’ve been told that the neurological effects of the Oxaliplatin are cumulative. My fingertips are so sensitive right now that I’m going to have to wear vinyl medical gloves (maybe even double-glove) when I first start playing each of my flutes tonight at rehearsal. I know this because yesterday when I picked up my piccolo to play it, I couldn’t do so until I’d warmed up the keys by breathing on them for a few minutes. Happily, this side effect should fade within a few days.

I did start to feel slightly nauseous about half an hour ago, so I took a Compazine. I’m on fairly heavy doses of Zofran for nausea until day after tomorrow, but the Compazine is there for “break through” nausea. It wasn’t much of a feeling — just a little unpleasant turn of my stomach while I was sitting here with my computer — but better safe than sorry.

I’m documenting all of this more for my own benefit than for yours, dear reader. I think it’s useful to compare — cycle to cycle — how I’m feeling at different points. Actually, I’m supposing this information might be useful to other people starting chemo, too, so… there ‘ya go.

Otherwise, not much especially new or interesting is happening in Rebecca Land. A visit to Minnesota that I’d hoped to make later this month is cancelled because it would have taken place during a scheduled chemo treatment and, obviously, staying on track with the chemo is MUCH more important. Bummer.

It’s been raining a lot here over the past few days. I like it — but I’d like it even better if I didn’t have to take the dog for walks in it. My niece gave me a couple CDs with soundtracks for the “Silent Hill” games — great music for driving in the rain!

Okay! Okay! Okay!!

I’ve been a bad blogger. Bad Blogger!! Naughty!! No! No! No!

And, obviously, I’ve been spending way too much time alone with the dog. You would think that being 2 1/2 years old now would have given him enough maturity that he wouldn’t still be spending large chunks of his day attempting to disembowel sofa pillows or barking at pretty much anything that enters our “territory” (that being anything he can see or hear and a few things I’m not sure what the hell he’s on about.)

Several of you have asked how I’m doing with the chemo side effects, so I’ll report on that. This week I’m feeling pretty darned good! Yippee! Last week, not so much.

I don’t know if it was arrogance or naiveté that had me thinking I wouldn’t have many side effects and that if I did have side effects, I’d not be much bothered by them. I have healed relatively easily from my two most recent surgeries and I’m otherwise pretty healthy (other than having cancer, ha ha), so I kinda figured — hey, this will be not so bad. I guess it’s all relative, but last week was more unpleasant than I’d anticipated. For those of you who are into medical voyeurism or who, like, maybe just kinda care about me (and I love you for that), I’ll lay out the week for you:

Monday — 4 hours of IV chemo and hookup for 48 hours of other kind of chemo at home. This was not too bad. I started noticing the neurological effects right away when I got home, though. Shooting “electrical” feelings in my fingers when touching anything cold.

Tuesday — Actually felt REALLY good on this day. Probably the first effects of the steroids they gave me on Monday.

Wednesday — Starting feeling at least somewhat nauseous pretty much all the time despite the anti-nausea drugs. Need better drugs. Also started feeling really moody — like wanting to cry or murder someone. Steroids again. Shooting electrical sensations continue.

Thursday — Nauseous. Still a little moody. Understand, I’m a pretty even-tempered person by nature.

Friday — At least the moodiness is gone. Realizing I’ve gotten…ahem…constipated rather badly. Lots of abdominal cramping. This is a known side effect of the drugs. Took senna plus stuff and went to bed. Cramps continue throughout the night. Still feeling nauseous too, by the way.

Saturday — Laxative is working, hurray! But now I’ve got body aches and “feel like I’m getting the flu” symptoms. These, too, are known side effects. Spent most of the day laying on the sofa.

Sunday — A little better than Saturday, but still quite weak. I’m literally panting just from climbing the stairs. I have to sit down to fold the laundry because it’s too exhausting to stand that long.

Monday — Started out feeling pretty good and then…surprise!…the OTHER known digestive side effect of my chemo kicks in. Diarrhea. Happily, a dose of Immodium fixed that right good. Nausea has pretty much stopped, though, so… yay!!

Yesterday — No nausea, no digestive issues, back to feeling almost normal. Well, alrighty then.

Today is even better. I feel pretty much entirely normal. So, if this past week is any indication (and I fear it is), this chemo thing is going to be a “one week feel like crap — one week feel pretty good” sort of program.

Well, shit. An embarrassingly big part of me right now wants to whine, “Why does this have to be happening to ME?? I don’t deserve this.” Of course, the answer to “why me?” is: Why NOT me? Disease doesn’t discriminate. It’s an equal opportunity life-fucker. You don’t have to live long on this lovely old planet of ours to know that. Still, I wouldn’t trade a single moment of the time I’ve been given — no matter how long that turns out to be.

So, anyway… no more chemo again until next Wednesday (I get a couple of days reprieve because of Labor Day.) So, I figure that I’ve probably got a full week of feeling good coming up. Can’t complain about that!

Healing — and a Good Short Intro to Anti-Nausea Drugs

I found this web page by accident, but I think it’s really quite nice. It’s short and to the point and, surprisingly!, about 15 years old. It’s just a brief explanation of Zofran and Compazine — drugs used to treat chemo-related nausea. (I just popped a Compazine, about 10 minutes ago, in fact. Feeling a little queasy and it’s better to get a jump on these things.)

See the web site.

I’m kind of “hiding out” upstairs at my desk with my laptop computer right now because Rosa, our cleaning lady, is working on the main floor. So, since I obviously have nothing better to do with my time, I took another picture of my port — one week later. It’s looking pretty good, eh? It still has a bunch of glue on it, but that will flake off eventually. (I was sternly cautioned against picking at it.) It seems to be healing quite well. Sorry if this is the sort of thing that grosses you out. I suppose, though, that if you’re that sensitive, you probably shouldn’t be reading my web site to begin with.

Oh, and hey… did I ever mention that this thing apparently goes directly into my jugular? Freaky, eh?

Decadron

It turns out that the steroid they gave me day before yesterday at the start of my chemo treatment has the additional not-very-fun side effect of making a person really moody.

Yesterday I was great — hugely productive. I did all kinds of stuff. It would have been a full day even had I been in the best of health. This morning, though, I woke up feeling blue and since then my mood has been all over the place. I was telling my friend Carol a funny story about something the dog did and then I suddenly had such a strong wave of sadness that I nearly burst into tears.

If you don’t know me well, let me just tell you that I’m not a “burst into tears” kind of person.

Later in the morning, my portable chemo pump began beeping (indicating that it was time to get it disconnected) so I headed over to the clinic. They had told me (on Monday when I got hooked up) that the receptionists know to get someone to take care of us right away when we come in for a disconnect. Yeah, sure. It was 45 minutes before someone finally took me back to disconnect me. Normally this wouldn’t have been that big a deal for me. I had no other plans for the morning and I’m generally a patient and easy-going sort. This time, though, I was alternating between being really pissed off and (again) nearly in tears.

When I finally got in to see the nurse and had a chance to tell her that I was having a “bad morning”, she explained about this common side effect of Decadron. (A woman getting chemo in the next chair confirmed it, too.) So… something else unpleasant to look forward to.

Like I don’t have enough to bum me out without getting a little help in feeling depressed from the drugs that are supposed to be fixing me.

Ah well… maybe this will wear off relatively soon so my 2-weeks between treatments won’t be totally depressing.

Cycle 1, Day 2 – Adventures in ChemoLand

I’m doing pretty well this morning. I didn’t sleep quite as much as I would have liked to, but insomnia is one of the side effects of the steroid they gave me before starting chemo. I had a little nausea yesterday afternoon, but the Compazine knocked it right out.

I’m still hooked up to my portable pump for the 5FU drug and that hasn’t given me any trouble. Every minute or so it makes that pleasant little “thrum” noise when it pumps a tiny bit of the drug into the tube. I published a couple of pictures of the portable kit on Facebook, if you’re interested in seeing it.

This morning I started my 3-day regimen with the higher doses of Zofran for prevention of nausea. The Zofran I got after my surgery was 4 mg tabs — these are 8 mg tabs, twice a day, on days 2, 3, and 4. (Today is day 2.) Now I really REALLY have to take more seriously the instructions I’ve been getting for years about drinking more water. It’s needed to help flush the chemo drugs out of my body. 2 quarts a day is what they say. This is going to be a challenge.

I’ve already begun noticing one of the side effects of 5FU (I think it is), which is sensitivity to cold. Yesterday I grabbed some cheese out of the fridge to grate it on my pasta and it was too cold to hold — I got all sorts of zinging neuro-electrical zaps in my hands. I had to wrap it in a couple of layers of paper towels to get the job done. My understanding is that this is a cumulative effect. With this first chemo, it should fade a few days after I quit the drug. After the next, it will take a bit longer to fade, and so on. Sometimes it can become permanent. It is, after all, nerve damage that’s happening. Let’s hope that doesn’t happen. Could make playing flute tricky.

My Port In This Storm

I’m probably going to regret using such a great subject line so early in the game, but it’s such a good double entendre that I couldn’t resist. I had my chemo port installed this morning. It’s a Power Port — how cool is that?! I think it’s going to give me super powers.

For those of you unfamiliar with how chemo ports work, here’s the story. It’s a little dealie (mine is about the size of a quarter) that’s inserted under the skin on the upper chest. It has a silicone “target” area that medical people can “plug in” to for giving chemotherapy, drawing blood, etc. The dealie has a tube-thingie (the catheter) that gets threaded down into a major vein near the heart. It makes it a lot easier to get chemo if the oncology people don’t keep having to look for big healthy veins in your arms. My veins don’t like getting stuff jammed into them. They hide, they roll, they do whatever they can to stay away from anybody with a needle — so this is a really good thing for me.

Anyway, so… they did this at Reston Hospital in the “Interventional Radiology” department. They gave me intravenous sedation so, while I was awake during part of the procedure, I apparently was out of it for the really intense part. I say “apparently” because I don’t remember any of that and when they told me they were done and I looked up at the clock, I was missing about 45 minutes. Either I fell asleep from the sedation or I was abducted by aliens. I’m willing to accept either explanation.

So, I’ve now got an interesting lump under my skin, some stitches, and a weird little hole up a bit higher where I’m supposing they stuck something in to guide the catheter into the vein.