Chemo Countdown & Expected Side Effects

The fuse is ever shorter on my “chemo countdown.” Only two days to go! And my emotional fuse is shorter, too. I often feel just on the verge of bursting into tears. I’m a little frightened of the chemo side effects, but I know that many, many women have handled them, so I can, too. I’m more worried about the treatment really working. Everything seems so much bigger and scarier and more real now that the chemo is about to start. For the last few weeks, I’ve felt pretty “normal,” even while going to various appointments and such. But once the chemo starts, there won’t be any denying that I actually have cancer. All the news about Elizabeth Edwards this week was not exactly what I needed to hear. Even though I know it’s irrational, every little twinge or ache I feel is a possible new cancer. I hope I haven’t hounded my doctor with too many ridiculous questions and concerns, like my sudden panic on re-reading my path report this morning and seeing “intralobular tumor” for the first time. Intralobular? I thought my cancer was all intraductal. Does this mean that the cancer is actually more invasive than I’ve been thinking? People with intralobular cancer usually have mastectomies because the cancer cells can be more diffuse, not focused in a single tumor. Did we make the wrong surgery decision? And why are my legs so tired? (David says: Because you’ve been running all over the city and not sleeping enough, maybe?) We’ll see how Dr. Cohen answers those!

But anyway, I think I’m prepared for the side effects, the physical ones and the emotional ones. For emotional dealings, I have my online group (the March Chemo-Sabes) and a new, in person support group that I’m attending for the first time tomorrow night. And I’ll have my mom here, too, for the first cycle. For the physical stuff, I’ve done a lot of research (and shopping!) to be ready. The drugs work by interfering with the reproduction of fast growing cells (like my cancer cells), so most of the side effects are caused by collateral damage to other fast growing cells in the body, like those in hair follicles, skin, and the inside of my stomach. Here are the likely side effects I’ll experience:

Hair loss. This is the one everyone knows about, of course. Although I’ve heard the stories about women who didn’t lose their hair, I’m not likely to join that group because of the drugs and dosages I’m getting. (Creative use of office supplies: I’ve heard that after most of the hair goes, a lot of women take the last of the fuzz off with masking tape because a razor hurts their sensitive scalps!) But I’ve got my wig, and my creative and talented clothing-designer mom is making me some stylish hats, including beanies for when my little bald head is cold at night. Maybe this weekend, after the first infusion, I’ll suck it up and go to the salon for the haircut I’ve been avoiding.

Nausea is likely, but can be easily controlled with medication. I have three different drugs at the ready: ondansetron, dexamethasone, and metoclopramide. Since they are designed to prevent nausea, rather than stop it once it begins, I’m supposed to take them before the first infusion and then around the clock for the first few days afterwards. Diet helps, too, like avoiding spicy, fatty, or fried foods (basically, anything that might have made me feel queasy while pregnant!).

Fatigue. I was surprised to hear that fatigue is cited by most chemo patients as the most troublesome side effect. Hair loss can be masked, and nausea can be treated with medication, but there isn’t much they can do about the fatigue, which is both physical and emotional. Dr. Cohen explained the fatigue cycles after each treatment: my energy will bottom out on about the fifth day after each infusion, then slowly come back up. But even so, the effect is cumulative, so that my highest energy point will always be a bit lower than the last high. It’s a cycle, but in a downward direction. They can give red blood cell boosters, like Procrit, if the fatigue is caused by anemia, but a study was just released saying that the FDA is concerned that these drugs are overused and may cause heart and other problems in cancer patients. Other things to do to minimize fatigue are more basic: take several short rests during the day, prioritize activities for when you feel most energetic, maintain a regular exercise program if possible, distract yourself with interesting activities, and so forth.

Early menopause and infertility. This was the humdinger for me, and I’m still trying to get my brain around the fact that, quite probably, when all this is over, I won’t be able to bear any more children. On one hand, I feel very fortunate that I already have two beautiful, amazing children to love. I’m so thankful that we decided to have Finn when we did, as he has been such a delight and, especially this past month, a comfort. I have the girl/boy balance, so no need to regret that I didn’t get to experience raising one of each sex. And yet…are we quite ready to be “done”? Dr. Cohen gave us the name of a fertility specialist who works primarily with cancer patients, in case we wanted to harvest and fertilize eggs and freeze the resulting embryos for in vitro later on. But David and I decided, after some really heart-wrenching discussion and a hard look at the in vitro statistics, that we wouldn’t go the harvest/fertilize/freeze route. Dr. Fornier was more optimistic about my chances of becoming pregnant after my treatments are over, so we’ll just have to wait and see. It can take up to two years for my periods to return, if they are going to, and my doctors have advised me to wait at least two years, and preferably five years, after treatment to try to become pregnant, in case of a recurrence. So after all that, we might not want to, anyway. And there are always other options if we really want to have another baby, like in vitro with a donor egg or adoption. Then again, would it really be so terrible to go through menopause now? No more periods or birth control!

Infection. I mentioned this in an earlier post, and I’ll be getting a regular injection to pump up my infection-fighting white blood cells. But I’ll have to do what I can to stay clear of harmful bacteria and viruses, even though avoiding crowds is tough when you regularly ride the subway, and not changing diapers isn’t really an option! I’ll take my temperature at least 4 times/day and head to the ER if it hits 100.4° or higher.

Sores and a metallic taste in the mouth. Special mouthwash and toothpaste is supposed to help (though I have to be careful when brushing my teeth to avoid gum damage, and no flossing allowed for the same reason), as well as eating with plastic utensils, sucking on hard candies, and drinking lots and LOTS of water.

Numbness in the hands and feet. This will probably happen in the second half of chemo, with the Taxol. Taxol can cause nerve damage, so many people experience a tingling sensation or numbness in their limbs. But if it becomes severe, they can adjust the dosage or switch me to another drug. Taxol also causes more allergic reactions than my other chemo drugs do, so to be on the safe side, they’ll give me a steroid shot before each of those infusions.

Other potential side effects, some fun, some not so fun: pink pee (actually, that’s the only “fun” one, caused by the red color of the Adriamycin), loss or loosening of fingernails and toenails (ew!), an increased sensitivity to sun (um, I can’t even imagine how that’s possible), dry skin, mild allergic reactions (like itchiness and watery eyes), joint pain and body aches, and bladder infection. More serious, though rare, side effects include heart damage and a form of leukemia (the latter of which would be treated by, you guessed it, more chemo).

Two more days until the ride begins…