Sunday, January 30, 2011

Side Effects

For those of you who read my previous lengthy and educational (or boring, as the case may be) post about radiation treatment (written not so much for you, but more for me to build a case to take to the cancer docs), you can dismiss it. Radiation is back on my plate. Long story short, I lost out to the breast cancer standard treatment juggernaut. The hype, “individualized, personalized treatment” apparently does not include the patient.

Now the latest decision I face (but wonder if I’ll have any say over) is what kind of drug I get to take for the next five years or, possibly, the rest of my life. One is Tamoxifen and the other Femara. Both eliminate any bit of estrogen this poor old body still can eke out. However they differ wildly in their side effects. (Here are the choices: http://www.breastcancer.org/Image/side_effects_chart_tcm8-331822.pdf.)

So, what’ll it be? Osteoporosis, increased cholesterol and weight gain (etc.) with Femara vs. blood clots, endometrial cancer and hair thinning (etc.) with Tamoxifen.

Sigh.

Back in about 6th grade, the entire class at Louisa May Alcott School took the Kuder Preference test. You used a pin to punch out your answers to a long series of survey questions indicating a career bent in one of 9 different categories: mechanical, clerical, computational, scientific, literary, social service, persuasive, artistic and musical. (*As a footnote, “outdoors” was added later as a category.) The questions were sort of like, (The following reconstruction is done from a distance of close to sixty years and is entirely fictional, but you’ll get the idea): “If you had a sick friend, would you rather (a) take care of him, (b) read to him, (c) make him chicken soup or (d) send a get well card.

I don’t even know what my best score was (I’d like to think “literary”), but, by far and away, my lowest scoring category was “social service.” Out were career options in a number of occupations, particularly those in health care. It was eerily prescient. I cannot imagine being in a job surrounded all the time by sick and diseased people! They are boring; all they are concerned about are themselves and their illness.

But, guess what? Here I am.

It bothers me how my disease has taken over my life, making me a one-dimensional person centered on one thing: the damn cancer.

So, I’m trying to get back to previous pleasures and get that chattering self-obsessed monkey to shut up for a while. To wit:

  • The movie Black Swan. I tried to find a good adjective to describe it in a message to my friend Jamie but the closest I could come was that I didn’t mind a bit paying big bucks at the box office to see it. Not for everyone though (madness, obsession, and even though there’s sexual naughtiness, definitely not a guy’s movie!)
  • The book Bonk by Mary Roach (free with Interlibrary Loan). Mary Roach is the funniest non-fiction writer on the planet. Bonk makes light of scientific inquiries into sex (from an especially female point of view). Here’s a gentle sample and, remember, she is writing about real stuff.

These days, the only animal testicles being implanted into men are silicone prosthetics called Neuticles – intended for neutered pets….You may well be wondering why a neutered dog would need prosthetic testicles. A vet quoted on the Neuticles Web site says the product, ‘helps the pet’s self-esteem.'

(Not for everyone though (madness, obsession, and even though there’s sexual nuttiness, definitely not a guy’s book!)

Love to all,
Rose

P.S. For those of you who didn’t manage to wade all the way through my last blog (don’t bother now since it is moot), visit my friend Jean’s blog with recipes for singles (or sometimes two): http://solefoodfunk.com.

P.P.S. The picture is me and Big-Un in older times. It's my screen saver.

Sunday, January 23, 2011

Tough decision

On January 12, I had an appointment with Dr. T. (the general oncologist) to discuss the results of the P.E.T. scan.

The test revealed no evidence of cancer in my body and except for some arteriosclerosis in my abdominal aorta, every thing looked fine. My blood work was okay as well, and he pronounced me “a very healthy 68."

I found this highly gratifying as I have spent the past dozen or more years working hard to overcome the sins of my youth by eating right and exercising regularly. So I asked, “If my tumor was so small (just three mm), and I had clear margins (no signs of cancer surrounding the site where the tumor was removed), a negative sentinel node biopsy and a good P.E.T. scan, why do I have to have radiation?”

He was taken aback: “Well! It’s part of the standard treatment . Statistics show radiation can help you live another 20 or more years.”

But I pressed the point until he finally dragged me next door and stood there while I made an appointment to see the radiation oncologist, Dr. H., the following week to discuss my questioning of standard treatment.

Fair enough. I needed a second opinion. But would I get an unbiased answer from someone whose job is to administer radiation therapy to cancer patients? I went home and started doing research and composing my questions to ask Dr. H.

Here are some points/questions I considered for my visit:

  • Online I found three fairly recent studies (No pooh-poohing. I was a university reference librarian after all) indicating a low rate of local recurrence of breast cancer in older women (70+) who had small, stage one tumors even when they did not have radiation treatments. All participants, with or without radiation, still had to take the hormonal adjustment therapy, Tamoxifen. (I’ve kind of mashed the study results together but essentially here are some key results.) The statistics showed that after five years with radiation and Tamoxifen there was a tiny chance (less than one percent) of local recurrence of the breast cancers. Women who only took Tamoxifen and no radiation had a local recurrence rate between 3 and 4 percent.
  • Women who underwent radiation but still had local recurrences of their cancers had to then have mastectomies. Women who didn’t have radiation and took Tamoxifen only and had a local recurrence had the option of having another partial mastectomy (followed by radiation – no escape this time).
  • And this interesting statistic: The five year survival rate of the radiation + hormonal therapy group was identical to the survival rate of the radiation only group. (Increased anxiety is a consideration for someone with a genetic propensity for worrywartism (moi). But Bob notes that I would worry in either case.)
  • Question: What kind of vitamins should I take during radiation to help counter the fatigue and other side effects of the treatments? Dr. H.: “No vitamins. There’s research to suggest that vitamins keep the cancer cells healthy.” (My note: Radiation therapy is radiation poisoning after all-- controlled, yes, but death to all cells without regard to healthy or cancerous is its mission.)
  • Weight: I’ve already lost 10 pounds since this cancer episode began. (I weigh less now than I did in 8th grade, but not a diet strategy I can recommend!) Radiation tends to make everything taste metallic; loss of appetite is pretty standard. While I love being slender, I just don’t think it’s all that healthy to not have any reserve adipose tissue!
  • Expense (minor consideration although the office manager for Dr. H. said she would bill Medicare a jaw-dropping $65,000 for the treatments. Medicare, in turn, would offer the hospital a payment between 15K and 20K that the hospital would accept. This means Medicare picks up 80 percent of the hospital payment figure; we pick up the tab for the remaining 20 percent.)
  • Inconvenience: 6-7 weeks driving daily to the hospital (60 mile round trip) for a 1-2 minute blast, rising gas prices, time missed from work for the treatments and/or the resulting fatigue.
  • Pain/discomfort: Here’s a quote from one of the studies: (http://caonline.amcancersoc.org/cgi/content/full/55/1/4): “…women who had radiation in addition to Tamoxifen reported worse breast pain, swelling and cosmetic outcomes in the first few years of follow-up compared with women who took only Tamoxifen. After about 4 years though, these effects were similar in both groups.”
  • Dr. H. said a portion of the lung cannot be screened from the radiation. (If there’s a cancer I fear, it is lung cancer. It took out both my daddy and my brother and I smoked for 35 years.) New studies are showing that long term side effects of full breast radiation indicate not only small chances of lung cancers, but also melanoma, heart and circulatory problems since blood vessels in that part of my chest are also damaged.
  • Because I am older, it is generally assumed that my cancer is less aggressive than the cancers in younger women. On the other hand, maybe the healthy status I have worked so hard all these years to achieve has made the cancer cells healthy too.

My final big question for the doctor: "What I want to know is if not undergoing radiation for my cancer is a reasonable option for me?

He said that it was. So I have decided I will proceed with my life without radiation.

Of course, there were other considerations I haven't discussed, ones more personal and emotional. And while my friend Betsy has cautioned me that someone suffering from multiple losses often doesn't think as clearly as under normal circumstances, I think this decision is a reasonable one. And, too, I want you to see how tough a simple 'go' or 'no' can be in case you might someday face a similar situation.

On a fun note, for those who cook mostly for themselves, my friend Jean (she who helped me settle my Mom’s apartment) is writing a book with wonderful recipes geared for one (or, sometimes, two). She has also begun a charming blog that includes some of her tasty recipes. She had an apple omelet sort of thing the other day that I made for lunch. It was so simple, yet so nummy I have definitely added it to my frequent cooker file. There's an RSS feed as well that if you click, you get automatic messages in your e-mail when she posts a new recipe. Here’s the link: http://solefoodfunk.com/.

The pictured flower is an amaryllis. Everett, a friend and colleague from work, and his wife Debbie gave me the bulb in memory of Mom. It’s a traditional gift their church offers to those grieving a death. While the plant has lots of Christian symbolism attached to it, I have been fascinated just watching it grow. It started out as a little white stubby thing that turned into this gorgeous two and a half-foot tall flower with four huge deep reddish-orange blossoms (the petals total 6 inches across!) I call it Amazing Grace.

Love to all,
Rose

Sunday, January 9, 2011

You are a lucky woman

Tuesday was the big day – 1:30 and 2:00 appointments with the oncologist and then the radiation oncologist. They work closely together and have adjoining suites in a building about a block from the main hospital.

The amount of information you get from just one cancer doctor can cause you to wilt with overload. After the two docs, I was dragging. Bob (who accompanies me these days for plunges into the health care jungle) practically had to carry me to the hospital for a blood draw after the appointments. (But here’s a tip I learned during the draw: If you have lymph node removal done, never after have blood pressure taken from that arm, nor have a blood draw, nor receive injections, nor....Well, there’s a whole litany of other things not to do: http://www.imaginis.com/breast-health/lymphedema. (Women with double mastectomies have blood pressure readings done on either their feet or legs.)

Anyway, I was so boggled that it wasn’t until I was in the car on the way home when I remembered the words of the oncologist. “You are a lucky woman. Your breast cancer is classified T-1A, the one that is the most survivable.” Now that perked me right up!

I still don’t know much more about the upcoming radiation treatments. Apparently I go through a planned simulation of the treatment before I actually start the genuine therapies. For now, all I know is that sessions will start within the month and be Mondays through Fridays for six weeks at the hospital in Show Low, about 30 miles from home.

Part of the wait to begin radiation also involves getting results of a P.E.T. (positron emission tomography) scan (http://www.petscaninfo.com/zportal/portals/pat/) that I had two days after consulting the docs. In the test, the patient is injected with a radioactive glucose solution and the machine probes down to the body’s very cellular level to determine the presence of cancer or other conditions or diseases. I thought it seemed redundant as everyone is already aware of my cancer, but I think the oncologists want to see if I’m otherwise okay.

The hospital doesn’t have a scanner; it is trucked in once a week by a national medical supply company. In order to schedule the test, I was interviewed on the phone by a woman on the East Coast. At one point she asked, “Are you claustrophobic?”

I dunno. I can ride an elevator without giving it much thought, so I said, “No.” But afterward I started thinking about spending 45 minutes trapped in a tube about the size of a coffin and whether or not I’d freak out. And, of course, the more I dwelt on it, the more panicky I made myself. Finally, I called the oncologist’s office and asked to have a prescription for a sedative or something for the test. He prescribed Ativan – one pill only. And I can see why it was just one…it is wonderfully potent. Taking it about a half hour beforehand turned the scan into a visit to some kind of weird spa: I was completely without cares, covered by a warm blanket, with Bobby just outside of the machine reading to me in his soothing, mellifluous voice. I was in a silver rocket to Nirvana.

Down to earth now – the picture is of the new paint job on the house. (Bob took it yesterday and you can still see snow from our storm of 10 days ago. It’s been so cold so long it hasn’t melted yet.) Anyway, the paint colors don’t show up as vividly as in real life, but are a sandy rose and a sort of brick red…While aesthetically pleasing, they were selected for a more practical reason -- they are the colors of the soil and mud in this part of Arizona. That is to say; they don’t show the dirt. I painted the porch and some of the window trim; Bob did the rest with a small hand sprayer. It took us most of October and November. We didn’t quite get it all done because after a lovely, long Indian summer, the temps plunged to single digits in mid-November!

But at least it was above zero. Ten days ago the temperature here at the house dropped to minus 17 degrees. Yes. This is Arizona and don't mention a word about global warming.

Love to all,

Rose