TV Ads and Chemo Brain

First up, I need to send a great shout-out to my sister because it’s her birthday today (as well as All Soul’s Day and Dia de los Muertos), and because she and my brother-in-law brightened my week considerably by appearing on my doorstep on my birthday.  ‘Twas a total surprise to me, especially because they live far, far, FAR away, and because my own family (even my son, who’s 9) did a grand job of keeping the secret. Now I know just how big a secret they can keep.

Hm. I’ll take this to be a good thing.

And another shout-out to all of you who have done so much to make this journey more bearable by bringing food, sending cards and care packages, calling and keeping me in your thoughts.  It has made all the difference. As the priest in church said yesterday (before they began the litany of saints:  “John and Paul, Cosmos and Damian, Agatha, Agnes, and Lucy” all the way down to Crysogunus — pardon my bad spelling), when people ask him how he is, he replies, “I am blessed.”  Well, that makes two of us.

The Popsicle Report:  Today, I opted out of a Popsicle. When I surreptitiously checked the freezer at the infusion center, I saw only a half-dozen sad, over-crystallized fluorescent tubes.  Perhaps I’ve gotten spoiled (as far as Popsicles go, anyway), but those just didn’t look worth having.

Today was infusion #4 of the Taxol, #16 in the series of 24 total infusions, so I’m two-thirds of the way through.  There’s no reason to expect any delays (fingers crossed), so I should be able to finish by the end of the year.  With holiday travels, the last infusion may end up being on New Years’ Eve.  Auspicious timing, I think.

After the energy-level roller coaster of the past couple weeks — steroid high, Benadryl crash, steroid high, steroid crash — I thought to ask the oncologist if we could make some changes to lessen the upheaval.  The rate of brain activity made me think I was channeling Robin Williams (even though he’s not dead yet) at his most manic stages. If you like him you can find plenty of his clips on YouTube.

So today, we made some changes in the pre-emptive drugs I take before the Taxol.  Instead of Benadryl, it’s Claritin, which doesn’t bring on the dozing.  And we’ve reduced the dose of dexamethasone to lessen the steroid high. I’m all for being happy, but can sacrifice a bit of happiness to gain a better chance at sleep.  The melatonin suggested by the naturopath hasn’t helped, so I’ve gone back to the Ativan and will try to get back to natural sleep once the chemotherapy ends.

My white cell count was a plain old, normal 5, but Dr. L wants me to do a couple Neupogen shots this week.  Since the count last week was 21, it’s hard to know if the white cells have leveled off now or might drop further.  Working with the Neupogen this week might clarify that. Now if I could only track down that elusive swine flu vaccine to complete the picture….

There have been some positive changes now that the remnants of the Adriamycin and Cytoxan have dissipated.  No more heart palpitations, except what I’d always had, or ringing in the ears. My mouth feels better, and food tastes better, though not quite right yet, which I realized again with an attempt last night to eat some chips and salsa.  And my stomach isn’t so acidic. Gosh, I might even attempt a glass of orange juice soon.  Yippee!

But of course there are trade-offs.  A slight oozing of blood in my nose, which is caused by the Taxol, and no improvement in the anemia. White spots starting to show up on my fingernails, and my eyebrows are slowly disappearing. No sign of joint/muscle pain (fingers crossed again), but I’m going ahead with the preventive maneuver of fingers on ice to prevent neuropathy.

Instead of the ice packs of last week, this time it was tubs of ice water for the full immersion effect during infusion. Since I couldn’t write in my journals during that time (I keep one of my own plus one for each child), I plugged in my iPod and gazed out the window. (I make a point of picking the Barcalounger with the best view.)  Outside was a glorious old maple tree, thick variegated trunk sending up two dozen close-packed branches to today’s clear sky, the ubiquitous Pacific-northwest moss spreading over at least half the tree.  It would be a fantastic tree for climbing if you can get a leg up. The tree is still hanging on to about half its yellow leaves, but it lazily surrendered a few now and then to float to earth. Sure beats watching pictures on a TV screen any day. Thankfully, there are no TVs in the infusion center.

So for the hour of the infusion, I watched the tree and listened to my tunes (on shuffle mode, of course):  some reggae from Bob Marley, Queen’s “Bohemian Rhapsody” (I’m not ashamed to admit), Santana, Bonnie Raitt, Ron Carter (playing jazzed-up Bach on his stringed bass), James Taylor, and Mozart’s clarinet concerto.

Look, if ya gotta pump poison into your veins to knock out a deadly disease, the more comfortable and distracted you are, the better.

As I’m typing this, my daughter is practicing the Shostakovich piece on the piano downstairs while my son is plucking away at “When You Wish Upon a Star” on his guitar in the kitchen. Shostakovich and  Disney. Perhaps this is what they mean when they talk about cognitive dissonance?

So anyway, while I listened, watched, and soaked (but didn’t doze), I was reminded of another image of fingers in a bowl.  Of course we document our age if we recall it but — do any of you remember Madge, the manicurist, in that Palmolive TV ad of years ago?  She’d soak her clients’ hands in dish soap because it was supposedly so gentle and effective.  I half expected to glance over and see her in her smock, sitting on a stool at my table, half-moon glasses slipped down her nose, nail file poised in midair.  And I wasn’t the only one thinking this. One of the nurses described the same memory when she walked by and saw me soaking my hands.

This is the second image from a TV ad I’ve connected to my experience.  The other one is the Cream of Wheat bowl.  That bowl followed me around in my mind, as it did the children in the TV ads of my youth. I much prefer the image of a soothing, heartening protector following me around.  Sure beats the Sword of Damocles. (If you want that whole story, you can find it on Wikipedia: http://en.wikipedia.org/wiki/Damocles.)

One other side effect that has not yet appeared (though some might beg to differ) is the dreaded “chemo brain.” Here are the symptoms, according to the Mayo Clinic:

Signs and symptoms of chemo brain may include:

  • Being unusually disorganized
  • Confusion
  • Difficulty concentrating
  • Difficulty finding the right word
  • Difficulty learning new skills
  • Difficulty multitasking
  • Fatigue
  • Feeling of mental fogginess
  • Short attention span
  • Short-term memory problems
  • Taking longer than usual to complete routine tasks
  • Trouble with verbal memory, such as remembering a conversation
  • Trouble with visual memory, such as recalling an image or list of words

(www.mayoclinic.com/health/chemo-brain/DS01109/DSECTION=symptoms)

Well I don’t know, but I suspect many of us could lay claim to some of these symptoms some of the time, even without going through chemotherapy. A friend told me he knew of someone who claimed she bought a whole roomful of furniture under the influence of chemo brain. I haven’t yet had the urge to amass couches and chairs, but if I do something equally wild, you’ll know why.

There is No Such Thing as Early Detection

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:

http://www.cancer.gov/bcrisktool/Default.aspx

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%.”

Yes, well….
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