Thursday, December 22, 2011

On turning 69

All Big-Un wants for Xmas is a belly rub.
(click for larger view)
Have I told you the story about Daddy and his roosters?

Lots of men are hard to buy gifts for and he was surely one of the hardest. One year, Mom used up about 85 books of Green Stamps and got him a big table lamp with a gigantic rooster as the base. Daddy laughed and said it was a great gift. Because of this pleasing reception, Mom started buying him roosters for every occasion. He got ceramic ones, glass ones, rooster salt and pepper shakers, vases, curtains and paintings. The rest of the family was thrilled as well. At long last the challenge of finding a gift for Daddy was solved. More roosters poured in. Over the years, he amassed a pretty impressive collection.

When he was in his final days of terminal lung cancer and mostly confined to his bed, Mom brought in the rooster lamp and set it up on his dresser to make the place look less like a sick room. Daddy stared at it while then said, “I always hated those damn roosters.”

I try not to collect things, with the exception of aphorisms and quotes. They don’t take up a lot of room, they make me laugh, or give me pause or reinforce a bias (good ones do all three). And like windfall fruit, they are everywhere, so it’s a cheap hobby to maintain.

Here’s a quote that set me off this morning as I considered my impending 69th birthday: “How we approach life is going to determine how we all manage aging, whether we have debilitating conditions or not.”*

Chipper, cheery people will tweet through their golden years thinking they actually are “golden years.” Complainers will complain (and get worse and more vocal as the going gets tougher). Tough minded folks will never admit, not even to themselves, the mental and physical deterioration that accompanies advancing years (80-year old marathoners). Control freaks will suffer a lot -- there being so many things about aging that cannot be controlled. I suspect there are hundreds, if not thousands, of other approaches: lusts of every sort, the careless, the caring, type A and B personalities, folks who trust in the hand of God and those who tilt against the tide.

What major personal characteristic of yours is taking you through life?

I’ve long identified with Eeyore from Winnie the Pooh fame. Here’s a passage from The House at Pooh Corner that, I think, rather captures the essence of Eeyore.

(Background: Eeyore is spotted eddying about in the river that runs on the edge of the Forest where Pooh, et al, live. Seems Eeyore was “surprised” by the ever-effervescent Tigger who managed to accidentally “bounce” him into the water…

            “That’s what I call bouncing,” said Eeyore. “Taking people by surprise. Very unpleasant habit. I don’t mind Tigger being in the Forest… because it’s a large Forest, and there’s plenty of room to bounce in it. But I don’t see why he should come into my little corner, and bounce there. It isn’t as if there was anything very wonderful about my little corner. Of course for people who like cold, wet, ugly bits it is rather special, but otherwise it’s just a corner, and if anybody feels bouncy-------“
            “I didn’t bounce, I coughed,” said Tigger crossly.
            “Bouncy or coffy, it’s all at the same at the bottom of the river.”

E-you in ‘12.
Love,
Aunt Rose

PS--Most of you know I am not a Xmas person (being born two days after and all) but to show you I do have some holiday spirit, here’s a gift – a sweet and amazing YouTube video that will change the way you think about …..Well, I’m not going to tell you what it is about or you might not look. (Special thanks to Jamie for sending it along.)


*The quote is by Katie Doucette from an article about former Today cohost Meredith Vieira and her husband, Richard Cohen, who suffers from MS. AARP Magazine, 12/11-01/12 issue.

Sunday, October 16, 2011

Happy Anniversary, Rosie

Sorry about the photo (looks like sight-impaired grandma and her seeing eye dog), but I dropped my camera and this was about the last family pic I had. 
Today, October 16, marks my one year anniversary as a breast cancer survivor. One year ago, my adult nurse practitioner reluctantly told me I had invasive ductal carcinoma (IDC) of the right breast.

Marking survivorship from the day of diagnosis is a relatively new point of view. Not that it gives you better bragging rights, but because this philosophy emphasizes the importance of every decision you make after you hear that chilling news.

Have I made good decisions? Well, therein lies the problem… I won’t know until I die (of whatever cause!). Certainly there are things I would do differently. (Want to know what they are? Just send $19.95 and I’ll mail you Rosie’s Four Simple Rules for Making the Most Important Decisions of Your Life.) Here's a sample:

Rule one -- Don’t look for simple answers, especially from non-experts. In fact, don’t look for simple answers from anyone, even “experts.” Cancer is so complicated it’s just not possible. Educate yourself by learning about your particular variety of the disease, ask questions and always get a second opinion. Oops. Never mind the $19.95. I just gave you the rules.

So, how am I doing one year later? I feel good. I don’t have the same stamina or strength of 18 months ago, but I exercise every day. I don’t take any medications (much to my oncologist’s dismay) because they make me feel lousy and I figure after messing with my hormones (birth control + HRT) for half my life, it was time to stop mucking about with my precious bodily fluids.

As for my mental outlook; a few months back, a friend asked if I were a kinder person after having gone through this episode in my life. As I recall, I brushed her question aside and denied having gone through any major personality breakthroughs. But I’ve come to reconsider that answer. It’s not so much that I’ve become kinder, it’s that I’m learning things about myself that I am finding humbling to discover. Do I have to tell you what they are? Not yet! Humility is a new trait for me; let me get used to it for a while! 

I found a helpful discussion about knowing oneself on my favorite blog site: Happiness in this World. (Philosophical stuff written by a young physician who was formerly Jewish, but is now a Nichiren Buddhist. His topics cover life, death and everything in-between in weekly Monday morning posts he promises take only five-minutes to read. His views are always worth pondering and the comments from his readers are often every bit as profound as what he writes.) http://www.happinessinthisworld.com/.

The bandana is to keep the grit out of my mouth while the wind blows about 30 mph. Spring is not one of our better seasons here in beyootiful NE Arizona
So what have I been doing for these past summer months since I’ve managed to post to my blog? My garden was the major challenge… I mean gardening in a desert. Get real. However, this year I was able to produce dozens of zucchini and a fair amount of Roma tomatoes. And as we were experiencing a miserable cold spring I thought a tomato plant from Siberia would be just the ticket so I bought an heirloom plant at the grocery store called (I think) a Black Russian. I got one lemon-sized, reddish-black lumpy thing that turned out to be the most divine tasting tomato I ever bit into. However, a late summer hailstorm and what I suspect is a #%&*@ gopher ended my gourmet gardening experiment rather prematurely.
And to think I grew about $7 worth of zucchini. Certainly makes all that effort worth while.

But summer is now long gone and I’ve moved on to other gourmet delights. Here’s one of my favorites: Wash a somewhat unripe pear. Place in a bowl in the microwave. Cook on high for 2-4 minutes (depending on how unripe, how big, etc.). Eat.  (Microwave Gourmet author Barbara Kafka says to peel and core first and then wrap in plastic and then microwave. And I say “humbug.” Take the skin off and scoop out the core while you’re eating it.) Hey, life is short.

I do spend a lot of time watching Netflix pix. Here’s my recommendation for sleeper movie of the year: City Island. Despite the non-starter of a title this is a dysfunctional-family movie (but funny) about keeping secrets from those you love.

Also I am feeling perkier enough to do housework again. (Actually, I finally admitted that pulling the cancer card every time I didn’t feel like cleaning the house was really just postponing a horrible day of reckoning.) So now I put on some of Mom’s big band CDs -- the music of her youth and the music I listened to in utero -- and happily fox trot around the living room dusting and straightening while channeling Mom's happiest time.

We all deal with loss in our own special ways.

Love you all,
Rose

“Early stage cancer is like crossing the Mafia and getting away with it. You live, but must forever glance over your shoulder.”
                         --“Athena” (user name/quote at the “No Surrender” cancer website)

Wednesday, May 18, 2011

A Lump in the Throat

I apologize for not having posted an update for over a month. My cancer doc wanted me to have a gynecological exam before starting my medication. I went to a new doctor, and his wife, a nurse practitioner, did the exam. She pronounced my uterus fit and healthy, but while examining my left breast (the good one) said. “There’s a lump here.”

Did your heart skip a beat? Did you say bad words? Mine did and me too.

I was already scheduled for a routine mammogram for my tater tot breast, so I had the doc order a test for the left breast, too. I got the results Wednesday: No lump. To make certain, I left mammography, walked down the hall and had an ultrasound. No lump.

Again…part of the “new normal” – living with fear of recurrence. It factors into your life and you begin to question just about everything you used to think and do. But as old “whozitz” said, “The unexamined life ain’t worth living.”

One thing I have been examining for six months was my surprise at getting cancer. The doctors have all (and I have four of them now) told me that the hormone replacement that I took for all those years wasn’t the cause. “HRT doesn’t cause cancer; if a hormone receptive breast tumor does develop though, it will feed it and cause it to grow.”

“But,” I say to myself, “Mom lived to be almost 93; both grandmas lived to their mid-nineties, all without any major health issues. I come from good cancer-free stock.”

Then it dawns on me. I’m also related to men! Daddy died of lung cancer at 69, my brother died of lung cancer at 64. Self-inflicted? Both were smokers since their youths. But as I’m finding out more about cancer, much as we fret and fuss about carcinogens, the majority of cancers are genetic in origin. Now I’m thinking that, in my case, the estrogen that I took for far longer than I should have fed the tumor that arose from a glitch in my DNA. But whence did it cometh?

And from way back in my memory banks, I recall Mama Sugar, my paternal grandma (who, by the way, smoked up until the week she died at 95 years of age) once telling me about her sister, Lillian, who died from a large tumor in her chest that everyone said was a result of her being kicked by a horse when she was a young woman.

Your Tax Dollar at Work

The hospital billed Medicare $40,328 for my use of their radiation equipment. Medicare paid them $38,116. Bob and I paid the balance of $2200. No wonder this country is going broke.

But one of the many blessings I count these days is having my cancer now, before 30 million new folks get dropped into the system!

And remember: Life is filled with lumps.  “….And a lump in the oatmeal, a lump in the throat, and a lump in the breast are not the same lump.  One should learn the difference.”
                        -- M. Dix, Letter to the Editor, Haxtun-Fleming Herald 10-10-01

Love to all,
Rose


Wednesday, March 30, 2011

Done! (to a turn)

Just a short post to let you know: Six weeks and two days, 1650 miles, thirty-three blasts of radiation are all behind me now.

Sunday, February 27, 2011

That special glow

I am nearing the half-way point in my radiation treatments. So far the side effects are mild: I crave sweet things (rare for me; I’m a salty type); I am tired, tired lots of the time; and there’s some mental confusion, mostly forgetting stuff like appointments and words and dates.

But dates have always been hard for me to remember. That’s the reason, when Bob asked me to marry him, I choose Leap Year Day. I thought it would be a nice easy day to deal with since it only happened every four years. As it turned out, it was better than planned since in the three off years we get to celebrate on February 28 and on March 1 as well! And one year was totally crazy: I was cooking an ordinary evening meal and wondering where Bob was when he walked into the house carrying a single rose in a vase.

“What’s the flower for?” I asked.

Sheepishly he replied, “I’m sorry; I forgot.”

“Forgot what?”

“It’s our silver anniversary, Rose”

Oh, oops.

The upshot was that we drove to Flagstaff that following weekend and bought a new car--a lovely shiny gray 2001 Subaru Forester that we christened and still own and still call, “Silver Annie.”

Anyway, February 28/March 1 mark our 35th wedding anniversary. We dare not miss celebrating this one; we can’t afford a new car!

Last Friday I went to a cancer support group meeting. Just me and three other women that day – all of us with breast cancer, but it was upbeat with lots of laughter and boob jokes. It’s not always that way suggested one of them; “Some days we cry together.” Two of the women, one just 36 years old, the other 51, had mastectomies and are now enduring breast reconstruction and exchanged information on how their new breasts are getting pumped up a bit at a time. Apparently, unlike a balloon, you can’t just go and inflate the breast all at once.

The other woman, a bit older than me, was more subdued. She has other health issues that compete for her stamina in dealing with her cancer. Still she has a steely resolve and outlook that is enviable.

Since I am a maniac for information (once a librarian, always a librarian) I continually search for studies and articles about the disease and the attempts to cure it…if there is a cure. Some think the best that can be hoped for is to prolong life. But these ladies as well as a colleague at work who has survived stage four breast cancer (including a double mastectomy), and my beautiful niece-in-law, who is beating a far more serious cancer than mine, provide something that doesn’t exist online or on the page – the reality of living with cancer, the “new normal.” To a woman, all are positive in their outlooks. Despite pain, discomfort, hair loss, disfigurement and ruined plans, they understand life is a gift.

Count your blessings now. Why wait?

Love to you all,
Rose

P.S. -- I am pictured above with my surgeon, Dr. W. He looks kind of like Bob, huh?


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