Failure is Not An Option

Wednesday, 3/12/03: Every time I go to the doctor, I think I’ve eliminated all possible excuses for them to stick me with a needle. Every time, I’ve been wrong. But maybe I should start from the beginning.

Yesterday’s visit was planned to be a long one. In addition to the usual two trips to the infusion center (one as infusor, and one as infusee) and the doctor’s appointment, I needed a pneumonia-preventing treatment (all patients get this, usually as sulfa drugs. Since I’m allergic to sulfas, they went to plan B). The first trip to the infusion center, to get my PICC dressing cleaned and blood drawn, was uneventful. The nurse, who revealed herself as Canadian when she asked how the PICC line was working oot, had yet another theory for the sore arm: mechanical phlebitis. In other words, the tube is bonking against my vein. She recommended heating pads and more fluids (more than the 2 liters per day I’m already supposed to drink??? I’ll slosh!).

The pneumonia-preventing treatment, Pentamidine though a nebulizer, was very easy. I sat in a little booth with a tube in my mouth and breathed normally. That’s it. The nurse warned me that I might get a bad taste in my mouth, so she gave me a Tootsie Roll when I was done. Alana will be proud.

Even though it was only about 11 a.m., we stopped for lunch before my doctor’s appointment (turns out that was very wise!). Cafeteria Chinese food at 11 a.m. is a new experience…. Then it was on to Dr. Horning’s office. Well. The phrase “three ring circus” comes to mind. It was really crowded, and I didn’t get in for my 11:45 appointment until nearly 12:30. Good thing nobody had any place else to be, and we all had books. Anyway, debate still rages about the sore arm issue, although it doesn’t seem to be an infection or a circulation problem. More fluids, everyone says.

On the bad news front, my white blood cell count has dropped below normal levels. This means several things: my chemo dose for this week was reduced, I need to get very serious about avoiding infections (no movie theaters, no shopping malls, no restaurants, only healthy visitors who wash their hands before seeing me), and I need to get daily injections of Neupogen, which stimulates the production of white blood cells (SEE!!! I can’t get away from these injections!). These ones have a new twist: I give them to myself. My reaction when Sheila mentioned this started with “no” and ended with “way”. My dad and Audrey offered to learn how to give me the injections (more convenient than either going to Stanford every day, or finding a nearby clinic that’s open on weekends). I’ll have the injections daily from Thursday to Monday, and they’ll check my blood count again on Tuesday. Sheila warned me that once my counts drop, it indicates that they’ll probably be low for the duration of the treatment, which means Neupogen shots every odd treatment week.

I finally made it back to the infusion center at about 2:30, for the third round of chemo. In addition to reducing the chemo dose, they also reduced the dose of the anti-nausea drug that caused the hiccups last time. Bad news for everyone hoping for a quick laugh this week. The chemo itself took about as long as the first time (one of the drugs needed to drip through an IV over the course of an hour), but that PICC line is just amazing. In the middle of the chemo, the nurse gave me the “how to inject yourself” training. I’m a big baby about things like that, and even to me, it wasn’t that bad. Seriously - it hurt less than plucking an eyebrow (although the yiccch factor is higher).

Filed under “why should this go smoothly?”, my insurance company requires pre-authorization from my doctor before they’ll pay for the prescription to the Neupogen. My question is: what’s the written prescription, if not an authorization? Anyway, Stanford is on the case.

Today is yet another chemo (weeks 3 and 7 are double-headers) - I’ll get some more of the drug that comes through the IV over an hour. Anyone wanna bet on whether they’ll come up with an excuse to stick me?

Thursday, 3/13/03: Yesterday’s chemo was injection-free. Mike came along to get trained on giving me Neupogen shots, and the chemo itself took about an hour. Amazing - in and out of the hospital in 2 hours! It’s a new record!

(Later the same day) I did it! I gave myself a shot! Now I’m off to make myself an ice cream sundae as a reward.

Monday, 3/17/03 (Happy St. Patrick’s Day): Mom arrived on Saturday for more cooking for the freezer, schlepping me to appointments, and general morale boosting. She and Mike joined me today for my first appointment with the radiologist, Dr. Richard Hoppe. As seems to be usual for Stanford, another doctor, Dr. Roberge, examined me first and explained a lot about how the radiation works. It will start one to three weeks after the last chemo treatment, depending on how I’m feeling and how quickly we can get a radiation planning session done. The treatments are daily on weekdays, and quick. All in all, they will probably take between 3 to 4 weeks to complete. The actual radiation is only a few minutes, but once you factor in waiting time, positioning time, and other random delays I’ve come to call “doctor time”, it will probably take an hour per visit. The side effects during treatment seem more annoying than painful: sore throat, dry mouth, tender skin. Although there’s a slight chance my blood counts will go down during radiation, they’ve never had to put a patient on Neupogen (the best news I heard all day - time isn’t diminishing my dislike for those shots!).

Both doctors spent time describing the potential long-term side effects of radiation. The most common is loss of thyroid function (my thyroid will be in the line of fire for the radiation). They’ll check my thyroid at every follow-up test, and if it stops working, I start taking a replacement hormone. All in all, no big deal. Radiation can also cause secondary cancers, but the doctors were about as comforting about that as they could have been: lung cancer only shows up more frequently in smokers, and increased breast cancer risk is only seen in women under 30. There may be a slight (in the single digits) increased risk for cancer of the anything-the-radiation-hit, and people who’ve had Hodgkins are at an increased risk for non-Hodgkins lymphoma (they don’t know whether that’s a result of the disease or the treatment). And there’s an increased risk of coronary disease, so I need to watch my cholesterol (won’t Dr. Francisco be happy that another doctor has joined in that chorus!).

My next appointment with Dr. Hoppe will be in about 4 weeks, to start planning out the radiation treatment in detail. Assuming the chemo stays on schedule, my last chemo is April 15. Ben’s April vacation starts on the 21st, so I’ll probably ask to start radiation the week of the 28th to have some time with Ben.

Since I still had energy after the morning at the doctor, Mom and I took a deep breath and went to a wig shop after lunch. My hair started to fall out this weekend, and although it’s not yet noticeable to anyone else, I can tell there’s a lot less. We went to The Next Step (they don’t have a web site yet) in Los Gatos. They were wonderful. I told them I wasn’t sure I was ready to try on wigs, so they started by showing me some caps and kerchiefs. Since I already have some caps courtesy of the American Cancer Society , and since I don’t really see myself as the kerchief type, we moved on to hats quickly. I found a few wide-brimmed ones that were pretty cute, and they even have sunscreen built into the fabric (something I hadn’t considered, but certainly seems useful). Once I’d tried on almost all the hats in the store, I was ready to move on to hair. First I tried a “fringe”, a wig that’s bald on top but long on the sides. The idea is that it’s less itchy to wear a fringe and a hat than a whole wig. I think I’ll go back and buy the one in my shade of brown when I get my courage up. Then it was on to the wigs. If you ever need a good laugh, go try on some wigs. I could dress up as Meg Ryan, Julia Roberts (in Steel Magnolias; they didn’t have Pretty Woman), Susan Sarandon (in The Banger Systers), or Monica Lewinsky. I saved a bundle on hairdressers because I found lots of hair styles I’ll never try, and it settled the question for once and for all about whether I should dye my hair black (maybe) or blonde (never). Finally, I found one that looked good, but I put off buying it until I decide whether I really need it. I wound up with one pale brown hat and one black one - I’ll try to talk Mike into taking some pictures of me next week.

This entry was posted on Monday, March 17th, 2003 at 1:05 pm and is filed under Chemotherapy. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.