Words Like Locusts Flew From Her Fingers

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.

“The Plan” With Greater Detail

I had an appointment with my doctor in Baltimore today. He removed all of my staples. Yay! I’m a bit more comfortable now. We also discussed in greater detail my treatment plan for the next several months.

As I’ve already mentioned, I’m getting a chemo port installed on Thursday and I start systemic chemo on Monday, August 22nd. I’m going to be getting the FOLFOX regimen alone for the first two or three cycles and they’re going to add Avastin after that. I’ll be getting the chemo once every two weeks.

Probably between the 5th and 6th chemo treatments, I’ll have a CT scan to see what’s going on with the cancer. I’ll also be having tumor marker tests every month, of course.

Assuming all goes well and on schedule, around the middle of November I’ll quit the systemic chemo. This is because you need to have 6 weeks after stopping Avastin before you can have surgery.

Around the end of December or the beginning January, I’ll have surgery again — this time WITH the heated intraperitoneal chemotherapy. Depending on what the doctor sees on the CT scan and when he begins the procedure, I may be able to have this second surgery done laparoscopically — which would be great. Either way, though, I’m looking forward to getting the HIPEC (the heated chemo). That stuff kicks ass. Cancer ass, I mean. It kicks cancer ass.

And that’s it!

I really like that there’s a plan in place.

Oh, also… I asked the doctor about the scary terminology differences between my pathology report in April and my pathology report in July. As you may recall, in April they were calling it “mucinous adenoma”, but in July it was “mucinous carcinoma, intermediate”. Dr. E. has assured me that my pathology has not changed in those three short months. It’s just that different labs use different terminology. Although they weren’t calling it carcinoma in April, it still WAS a cancer — which I knew. The lab who did the July pathology is just more “general” about how they name things. Anyway, not to worry. It’s the same thing now that it was in April. Not great — but not horrifying, either. So. Good.

Some Photos from the BSO Academy

There are about a gazillion pictures, but here are just three.

We still haven’t received the recording they made of the concert, but hopefully that won’t be too much longer.

Bummer

It’s certainly good to see that the CEA has gone down a bit but it is definitely disheartening to see that the CA125 has gone UP since my surgery. Still, it may be that it’s because I’m still healing. Inflammation elevates these test results.

Moving Right Along

It’s been an eventful day here in Rebecca-Land. A nurse from my oncologist’s office called and I am now scheduled for all sorts of things: Tomorrow I get bloodwork, next Wednesday I go to “chemo class”, next Thursday I get my chemo port installed, the following Monday I have my first chemo treatment. It’s a lot to process, but I’m really glad we’re moving forward at a good clip. Once I’m done with the chemo (4 months worth, I think), I can have surgery again — this time WITH the HIPEC treatment.

“Arts” With A Small “a”

Okay, so the words haven’t exactly been flying like locusts lately.

Sorry about that. I’ve been spending a lot of time in a sort of grayed-out fog waiting for the next steps in treating my cancer to begin. There, I wrote it. Cancer. I’ve been really avoiding that. Writing it makes it so much “realer”, you know? But I guess I might as well get used to it because with the kind of cancer I’ve got, there’s a pretty good chance that I’m going to be dealing with it in one form or another for the rest of my life.

Anyway, enough about that for now, though. The Huffington Post has a nice little article that I think you should read: Michael Kaiser: The Importance of Small Arts Organizations.

Until recently, I was the president of a small arts organization in which I am also a performer. That would be the Woodbridge Flute Choir. I’m very proud to say that the flute choir is performing this week at the National Flute Association’s annual convention in Charlotte, NC. It’s a huge honor and one that’s well deserved. The flutists and our conductor (Artistic Director, Debbie Gilbert) have worked very hard and the group sounds amazing and beautiful.

Relating back to Michael Kaiser’s article, though, the Woodbridge Flute Choir — like many small arts groups — is badly in need of money and more exposure. (It’s sort of a chicken and egg situation, I think. If we had a bigger following, we’d get more money. If we had more money, we could perform in more popular venues and draw bigger audiences.)

Next season (Fall 2011 – Spring 2012), the flute choir is taking a big risk and paying to perform a couple of concerts at the new Hylton Performing Arts Center in Manassas, Virginia. If you’re in the area, come and listen. If you’ve never heard a flute choir, I think you’ll be very pleasantly surprised.