April 22, 2012…….things I think about in the dark…..

April 22, 2012…….things I think about in the dark…..




Sometimes when I’m lying in bed waiting to fall off to sleep, I allow myself to review my health “situation” for the past five years. During the daytime I usually try to do enough self-talk that I can downplay the overall picture and focus just on the way I feel at that moment, sometimes good, sometimes not so good. But at night in the dark I feel more ready to take on my reality. Why that is, I don’t know. You’d think it would be easier to face tough times in the bright light of day, but that’s not how I work.

Anyhow, recently I’ve been ruminating over these past five years—March 2007 I was diagnosed with metastatic breast cancer, April 2007 I had a modified radical mastectomy and then had a port inserted in my chest to facilitate chemo treatments, and then in May 2007 I began chemotherapy treatments which have continued to this day. In fact, tomorrow I’ll make my weekly trek to the Women’s Cancer Hope Center for the umpty-umpth infusion. Last summer, the summer of 2010 I had 25 radiation treatments to my chest and neck, from both the front and the back. I get all kinds of tests and scans—the usual blood tests before every chemo, tumor marker blood tests every couple of months, echocardiograms every two to three months, several CT scans, MRIs, PET scans and bone scans annually. There’s never a dull moment. Plus I’ve had sessions with two different physical therapists, many, many treatments for lymphedema, plus daily home self-treatments. I’ve had acupuncture, now with a second acupuncturist, a couple of small massages, treatments from a naturopathic physician, and an initial visit from a palliative care group. And, gone through bankruptcy. It’s enough to send a person around the bend.

And that’s just what’s on the schedule. What is unscheduled are all the various side effects that the treatments, mostly the chemo treatments have caused. I’ve had nausea (no longer, thank the Lord), fatigue (for the whole five years, sometimes better, sometimes worse), muscle pain in what seems like every muscle in my body, sometimes all at the same time, sometimes just in my back, osteoporosis, back problems of all sorts, lymphedema in my feet and hands (tingling and numbness), dry eyes and mouth, weepy eyes, mouth sores, pain in my jaw, rashes, UTIs, lost voice, cough, shortness of breath (currently my worst problem, and it’s a BIG problem), inflamed finger and toenails, cracks in my fingernails, loss of hair (three times—it’s just now growing back for the third time and is totally different from my “old” hair. Now its frizzy curly with a mind of its own.) Oh, yeah, and constipation and diarrhea. And maybe there’s more, but I forget. Anyhow, right this minute I have frizzy hair, sparse eyelashes and eyebrows, serious shortness of breath, fatigue, constipation, muscle pain especially in my back, neuropathy in my fingers and feet/toes, cracked fingernails. And that’s on the lowest dosage possible of this current chemotherapy.

There is one good side effect. Due to the steroids that are included in the cocktail of drugs infused each week, I get a couple of days of minor back pain but lots of energy. It feels so good to feel good; I race around doing all kinds of little chores that go unattended when I’m more fatigued later in the week. But on the other hand, the steroids make me want to eat, just exacerbating my weight problem.

However, in addition to my “regular” life, of which I have little left by now, I do have two additions to my life that have made the cancer journey more do-able. One is a website for metastatic cancer patients from which I have learned an awful lot about what other women are going through, along with good information about drugs in the pipeline, alternative treatments, info on cancer treatments centers, nutrition, and just general support and inspiration. Of course, there’s the all-too-often death of one of the posters to the website, and that’s a sobering thing. But the biggest positive in my life now is a group of women, all who have or have had cancer that I meet with weekly, along with a very talented and caring facilitator. We know, as much as anyone can, what each other are dealing with in our cancer journeys and that makes it a very safe, very special group. I’m eternally grateful I found this group right after I started chemo. It would have been a lot worse, mentally (and maybe physically, who knows) without them.



So that’s me ranting and raving (or maybe moaning and groaning) for once, and out in the open in the daylight, for a change.