There’s no place like home

If only I could click my ruby red slippers and be transported to Kansas.

Tomorrow is chemo day number 5. I’m not looking forward to it. You might say I’m totally freaking out.

I start a new chemo drug, which means a whole new regimen of complementary medicine and, in short order, a new set of side effects.

In fact, the side effects could start any moment. I’m supposed to be taking dexamethasone right now. I take 20 milligrams now and 20 milligrams in the morning. This is a steroid given to help prevent allergic reactions to the chemo drug I’ll be given tomorrow. I’ll be taking it every two weeks through August.

During chemo tomorrow, I’ll get a megadose of Benadryl in an IV drip. This is a drug I don’t take in the tiny little over the counter doses because I don’t like the side effects I get.

More than you ever wanted to know
And then, there is the main event: Taxol. This chemo drug has the potential to cause me PAIN. I have to have prescription painkillers on hand in case it causes myalgia that is too severe for Advil. This is just one of the side effects. Here is a summary of the “adverse events” experienced with Taxol, with the percentage of patients experiencing them: neutropenia and leukopenia - 90% (I already get a shot the day following chemo to prevent this); anemia – 78%; hypersensitivy reaction – 41% (I think this is why I get the steroids and Benadryl); neuropathy – 60%; myalgia/arthralgia - 60%; nausea & vomiting – 52%; diarrhea – 38%; hair loss – 87% (too late!); infections – 30%; bleeding -14%; red cell transfusions – 25%; platelet transfusions – 2%; bradycardia - 2%; hypotension -12%; abnormal EKG – 23%; mucositis - 31%; bilirubin elevations – 7%; alkaline phosphatase elevations – 22%; AST (SGOT) elevations – 19%; Injection Site Reaction – 13%.

Phew.

Now, lest you think I’m getting myself all worked up over these scary things, I’m not. I’m fixated on the myalgia and arthralgia (muscle and joint pain). That scares the crap out of me. I will forget about all of the rest of these symptoms (especially the big words I don’t understand) until one day I realize my eyeballs have been purple for three weeks and blurring my vision, then I’ll call my nurse and say “is this a side effect of chemo?” And she’ll say, “oh my goodness, you should have called right away! Now you have permanent brain damage!”

The other symptom I’m worrying about is the weight gain and swelling that comes with the steroid. It can be quite severe. I’m not worried about this in a vain “oh my god, I can’t get fat” kind of way. It’s a little late for that! I’m worried about my health. Not just my breast cancer health, but my heart, my activity level, depression – all of those fun things that come with weight gain. And then there is the breast cancer to worry about. I just read tonight in “Lifeline,” the newsletter of Y-Me National Breast Cancer organization, that “the risk of death from breast cancer [in women who already had breast cancer] was reduced 19 percent in those who walked or did similar exercise one to three hours per week, by 54 percent for walking three to five hours per week, 42 percent for those walking five to seven hours per week and 29 percent for those putting in over seven hours of exercise per week.” It’s going to be a little hard to do this when I’m incapacitated by steroid fatness. Not to mention fat cells produce estrogen which is feeding my cancer. I’m seriously obsessed over the fat cells in my body after learning this little factoid. Too bad obsession does not translate to weight loss for me.

(By the way, I noticed immediately that the reduction in death rates in this report declined over five hours of exercise per week. The article ignored this fact. Also, I want to research this information further. If I’m reading this correctly, walking three to five hours a week ought to be required by law for breast cancer patients. Chemotherapy only reduces my risk of death by about 7 percent! Walking five hours a week for a 54 percent risk reduction would be significantly easier. The study was done by Brigham and Women’s Hospital and Harvard University, drawing on the 20-year “Nurse’s Health Study.” Please comment on this post if you have any information to enlighten me.)

Update on Russ’ condition
The build up to this evening’s anxiety attack has been happening all week. I’ve just avoided saying anything because I feel really bad complaining about myself when my father-in-law is in such dire straits. He is still at the hospital at this hour. About 15 minutes ago, I received a phone call from my mother-in-law saying that he really wants to go home. He’s pretty fed up that he can’t leave. They told him last night they wanted to move him to a regular floor, but didn’t have room. Of course, you can’t be released from ICU, so that meant he’d have to stay again tonight. Well, tonight is here and they are saying again, “we want to move you, but we don’t have room.” This means he couldn’t possibly be released until Saturday IF they find a room for him tomorrow.

Well, he’s finally honked off enough that my mother-in-law, brother-in-law and husband are all there right now trying to get him released. That staff had better be happy I’m not there. Troy’s family members are relatively quiet or laid-back. I’m a screamer and fist pounder. I’d be throwing a fit reminiscent of the “give my daughter the shot” scene in Terms of Endearment.

The reason I’m not there is because Russ keeps getting infectious diseases. No one feels I should be around him, including him. Last week, he had an E. coli infection. A few weeks before that, sepsis. I would like to go see him and I’m really afraid I’m not going to get to see him again at this rate.

He is still in a feisty mood and is partially ambulatory. When my mother-in-law told him yesterday about this noise my car makes when the air conditioner is on, he insisted that she tell me to take it to a shop to get it inspected. First, I was confused about what she told me because the air conditioner noise has existed since the day I bought the car 5 1/2 years ago. It hasn’t gotten better or worse in that time. So, I had forgotten about it and don’t care. Second, I could not believe my father-in-law was sending out commands from his death bed for me to have car maintenance! I mean, really! He needs to get a hobby!

The stress of the situation is pretty much what you can imagine, though. My mother-in-law has stayed here the last two nights and might show up tonight. Maybe longer? Who knows. We are shuttling her to and from the hospital, which is about 45 minutes from here in regular traffic. None of us have gotten to bed at a reasonable hour all week. Colleen did not get to bed until 11:15 last night! Imagine what this morning was like!

And back to me
Of course, in all of this, I’m still dealing with my own crap. Yesterday, I realized my eyebrows are falling out. This is much more frightening to me than my hair falling out. I think it’s because you can’t hide it – at least not if you have big, hairy, brown eyebrows like mine! And drawn-on eyebrows look, well, drawn-on. Women who have minimal eyebrows at least have some hair there that they can darken. When my eyebrows are gone, I will have to drawn on skin and then, of course, risk having an makeup meltdown. I will look in the mirror one steamy July afternoon to see my left eyebrow running down my cheekbone.

Also, the eyebrow loss is happening fast. It occurred to me yesterday and today I can tell quite a bit more is gone. They seem to be getting shorter. I would guess the length is reduced by at least 25%, not to mention the overall density is down probably by half.

And early this morning, I woke up with my first night sweat. If you have not experienced menopause and do not know what this is, let me describe how I woke up at 5 a.m. My first thought: “Ew. What is on my face?” I raised my head from my pillow. Flopped back down because I was tired. “WHY IN TARNATION IS MY PILLOW SOPPING WET?” screamed the voice in my head. Then, it slowly occurred to me that it was entirely possible my head had sprouted spigots in the middle of the night and dumped gallons of sticky sweat on my pillow and mattress. My pillow was actually soggy – not the pillow case – the PILLOW. I’m so completely grossed out. I may never sleep again.

An easy request from me
My nephew, Aaron, is stationed in Kuwait for what we really hope is a six-month stint. He’ll be returning in December. Tomorrow, June 23, is his 25th birthday. If you know Aaron, or even if you don’t, send him a little birthday message on his blog.

Author: rosie

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1 Comment

  1. Oh my goodness! I’ll have you know that all my pituitary and thyroid issues cause hot flashes and yes…NIGHT SWEATS!!!!!! I can feel your pain, sweetpea. Nobody can fully understand the misery and the inability to cool down. My poor husband freezes while I sleep naked with the fan on. Our household is usually under threat of physical harm to anyone who turns the thermostat above 68!

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