It’s a beautiful day in the neighborhood, despite what the weatherman predicts. Clouds over The Mountain, which has already gotten its first layer of new snow, but here it’s sunny and the water is peaceful. The newest hummingbird came by, having made its first appearance only a week ago. His head is entirely red when it reflects the sunlight.
Back by my request: The Popsicle Report. A nurse friend told me to ask for the Popsicle even though it’s no longer part of the protocol. She said a nurse could never turn down such a request. So yesterday it was tasty strawberry on a stick. I figure if I ask for it while waiting for the blood results and before the Benadryl knockout, I can still get the treat. Timing is everything.
The third infusion of Taxol went routinely. Three down, 9 to go. Last week, we did 3 Neupogen shots to bolster the white count — which is now a whopping 21. Almost twice the high end of the normal range. So I guess maybe we can stop those shots now….
The Benadryl knocked me out again, and I kept my hands on ice packs during the infusion. I’m feeling a periodic tingling on occasion in various fingers, but that might be my imagination. Something like the placebo effect — they tell you it might happen so you think it does. It’s not happening regularly enough for me to connect it to the Taxol — yet.
I took a nap when I got home — the after-effects of the Bendadryl — but that was probably a mistake. I lay awake most of last night, and more than ever, sleep deprivation is affecting my mood. I think I’m doing pretty well at keeping my spirits up but today I’m living the words of a Dave Matthews tune, “So Much to Say”:
I say my hell is the closet I’m stuck inside
Can’t see the light
And my heaven is a nice house in the sky
Got central heating and I’m alright
Keep it locked up inside
Don’t talk about it
Talk about the weather
Can’t see the light
Open up my head and let me out…
I find sometimes it’s easy to be myself
Sometimes I find it’s better to be somebody else
Today, I’d like to be somebody else.
I wouldn’t mind being Dmitri Shostakovich. My daughter is practicing the piano section of his Concerto #2. What a gorgeous piece. Wish I could create music like that.
Been doing more research, wouldn’t you know, this being Breast Cancer Awareness month and all (no way to avoid noticing that — pink everywhere you go — but I’d rather think of it as Hispanic Culture month). I’ve finally found a few obscure references to the discrepancies I’ve discovered in my own experience vs. general public information.
One report from the American Cancer Society briefly mentions that having dense breast tissue may be a risk factor, but I have yet to see that show up on any of the standard public lists. Another report I stumbled across even mentioned that triple negative disease may have its own set of risk factors but does not explain what those are. This version of breast cancer seems to be found more often in African-American women and among lower income levels. Add that to the other factors that don’t apply — obesity, family history, etc. — and I’m wearing a shoe that just doesn’t fit. Too bad I can’t take it back to the store and return it.
I mentioned last time my irritation with the mantra “get your yearly mammogram.” I went back and checked Barbara Ehrenreich’s article about the breast cancer cult. It discusses the doubts about mammograms, and was published back in 2001. My husband passed along to me a slide show from a presentation done by a physician at the Fred Hutchinson Cancer Center up in Seattle, where we went for a second opinion. The presentation is entitled “Screening for Breast Cancer: Uncertainties and Controversies.” In his summary, Dr. Thomas makes this clear statement: “Mammography is the only method for breast cancer screening of proven efficacy, and it is not very good.” I don’t know the date of this presentation but he cites references from 2007.
Can’t make it any plainer than that.
And yet, and yet — we hear the mantra: Get your yearly…
Seems we ought to be hearing a change in that mantra by now.
This week on CNBC was an interview with the CEO of a company called Naviscan, describing their “new” technology to diagnose breast lumps. Turns out it’s not really all that new: PET scans that focus specifically on breast tumors. PET scans are already used in the staging process for cancer in general. And again, this “new technology” is put to use only after the patient or doc finds something that needs scoping out. Maybe it will help pin down the diagnosis more accurately than MRIs or ultrasound, but it’s still not early detection. Makes for a catchy headline during Breast Cancer Awareness month though.
Some organizations take the approach of preventing breast cancer, which is a worthy goal, even though we don’t know entirely what causes it. Some reports say high-fat diets. One I found even blamed a high-sugar diet. I came across one that describes the Gail model, which the MD Anderson Cancer Center in Houston uses as part of its method to calculate the risk of breast cancer for patients. I’d never heard of it before, so was happy to find the online calculator here at the National Cancer Institute:
So ladies on this list, have a go at it if you like.
Just don’t trust the results.
I calculated my risk based on my situation in May, before I discovered the lump. According to the calculator, “Based on the information provided, the woman’s estimated risk for developing invasive breast cancer over the next 5 years is 1.3% compared to a risk of 1.2% for a woman of the same age and race/ethnicity from the general U.S. population. This calculation also means that the woman’s risk of NOT getting breast cancer over the next 5 years is 98.7%.”
This shoe doesn’t fit and I want to take it back.
On the brighter side, I’ve learned a bit more about triple-negative disease. If you search through the list of clinical trials for breast cancer, you’ll see that most have to do with hormone-receptor positive or HER2-negative tumors, and are either for patients whose cancer has metastasized or who have earlier stages than I do. That would make you think that people like me aren’t getting equal attention, but as Dr. L, my oncologist explained, it’s only been in the past 4 years or so that the triple-negative variety has been clearly defined, so it’s not so much a matter of neglect as it is the others getting a head start. And there’s heartening news from over the summer about the use of drugs called PARP inhibitors against the triple-negative variety. But again, the tests have been in people with metastatic disease. According to Dr. L, the reason most of the trials are done in people with Stage IV (metastatic) disease is because you can see quick results — the cancer either responds immediately or it doesn’t. Trials done on patients with earlier stages take longer to get results.
But now it’s time to get out of my own head and outside where the brightness is. Tomorrow is my 49th birthday. To end, I’ll turn again to Dave Matthews, from a song called “Two Step”:
Celebrate we will
Because life is short but sweet for certain
We climb on two by two
To ensure these days continue
These things we cannot change