2010 Breast Cancer Survivor Update

I am happy to report that as of halfway through 2010, I am stronger than I ever remember, which isn’t saying too much since these days I don’t remember as much as I used to. Still, I bought a house that has steep stairs to the second floor, more stairs to the basement, and a nice little hike out to the studio. I have been doing things I can’t remember (again, who knows?) ever doing, like mowing the lawn, shoveling a substantial driveway, hefting boxes of books and 40-pound bags of fertilizer. Good grief! I never thought it possible.

Ten years ago, when I moved to Bay City, Michigan, from Beaver Island, I was in terrible shape, having suffered two rotator cuff injuries, a frozen shoulder, acute tendonitis in both wrists, a bad back, etc etc. When I moved to Bay City, I couldn’t lift a half-gallon of milk. But last year I finally joined a health club and started working on various of those complicated-looking machines and by gum, I started to get stronger. I went very slowly, but after a year of treadmill and throwing and pulling and biking, I must have done something good, because I was able to move boxes like I was twenty. Or so it felt.

Of course, five years ago I was diagnosed with invasive breast cancer and went through the usual treatment of 34 doses of radiation. (I think today there are some new techniques that are much quicker and safer.) I did not require chemo and did not take Tamoxafin after a disastrous six months of Arimidex, which I quit.

So now, five years out, I seem healthier than ever. I say “seem,” because with cancer you never know. You can feel on top of the world and be carrying around a tumor. But every minute of this respite is a gift to me and I continue to feel extraordinarily grateful.

I decided that there’s nothing magical about 12 months and decided this time to wait 18 months for my next mammogram, which I plan to have somewhere besides where I had it last year. I am not waiting weeks for results this time and I’ll drive wherever I have to to get a same-day reading. Medicare pays for everything as of January 1, 2011—checkups, lab work, mammograms, so my checkup isn’t until January 3rd.

My health club now is my house and garden and driveway, as well as a bicycle which I bought when my feet started to give out after walking a couple of miles. Biking is much more fun, I’ve discovered—I can see so much more, go farther, and I even go mushroom hunting by bike. As for my diet, I quit the vegan thing because my plumbing couldn’t handle all that fiber and I missed protein. I just eat lots of colors and try to follow Michael Pollan’s advice: Eat food, not too much, mostly plants.

That’s it for now. With any luck, I won’t have anything more to report until 2011.

A Lump, the Second Time Around…..

It’s been four years since I finished my treatment for breast cancer—long enough for me to forget to be on high awareness mode and always take a friend when dealing with the world of hospitals and labs, even if things look relatively straight forward. After all, for four years, my routine mammograms had been clear.

Then, this past January while vacationing alone in Fort Lauderdale, I found a lump (explitives deleted). Thoughts assailed, almost simultaneously:

#1: I still have two weeks in glorious 70-80-degree weather while at home in Michigan temps are diving below zero….

#2: The lump is in the same breast that has survived three surgeries—two lumpectomies and one sentinel node removal—maybe it’s just scar tissue.

#3: What if it’s…cancer!?!??

#4 Yikes! What if I need surgery? My dad (a plastic surgeon) used to hate operating on radiated tissue. What if a radiated breast can’t heal? (Much later, after everything that follows here, my surgeon assured me that she could operate on a radiated breast, but the scarring would be worse.)

#5: More surgery on that side would no doubt result in huge, possibly life-long lymphedema in my right arm—the one I need to make art and books and support myself.

#6: What if I had to have chemo…I lucked out the first time, with just radiation.

What to do?

I decided, after some long walks on the beach, to wait until I got home in February and just get my annual mammogram, scheduled for March, a month early. That way I would relieve my mind if I was fine, and get the thing early if I wasn’t. I would remain calm and not ruin my remaining days with worry. And I wouldn’t tell anybody. Yet.

I thought, if I’m ok, why ruin my beautiful Florida vacation, and if I’m not ok, why ruin my beautiful Florida vacation?

Makes sense, doesn’t it? A simple solution.

Week One and Two

I stay in Florida, enjoy my vacation, and two weeks later, drive home.

Week Three

What follows is a 12-Step program I hope never to do again:

1) When I get home in February, I call the Women’s Center lab to make an appointment for my annual mammogram at the same place I have always gone. They say (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) it hadn’t been a year yet so my insurance won’t pay for it. I say that I thought I’d felt a lump and wanted to get my mammogram a month early. They say I need my surgeon’s orders for that.

2) So I call my surgeon’s office and I’m told (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they will fax the order to the lab.

3) Two days later, I call the Women’s Center lab to make the appointment. They tell me (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they never got the fax from my surgeon’s office and that they don’t give out their fax number to patients.

4) I call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear) I am told that they don’t have the fax number of the Women’s Center. What? I say. Lots of patients in this office use the Women’s Center! Well, we don’t have it. Ok, I say. Just send the orders to me in the mail. So I am told they will send it to me in the mail, after I give them my address, which apparently isn’t in my file?

5) I call the Women’s Center for the 3rd time and (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) I tell them I will bring in the doctor’s order and they let me make an appointment for a diagnostic (remember that word) mammogram, the first appointment available being in a week.

Week Four

I am still pretty calm, but I am getting irritated. How much hassle and anxious waiting can a high-risk breast cancer survivor take? I finally decide I need a support group and I share my discovery and concern with my guy and my best friend, who remain calm.

6) A week later, I still haven’t received the orders from the surgeon’s office and my appointment is in an hour. I frantically call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear), I am told not to worry, they are faxing it over to the mammogram lab right now. Somehow my breast cancer specialist surgeon’s office has discovered the Women’s Center fax number.

7) I arrive at the Women’s Center mammogram lab. I wait not much longer than I am usually on hold here, except there is no music or annoying advertising in my ear. A tv screen is running a video ad but I don’t look at it.

8) A very young tech with a bouncy manner takes me into the dressing room, where I change into the usual open-in-front (thankfully cloth, not paper) top gown and shortly I am in the mammogram room. It’s a different machine, I note: the new digital machine. I’m asked to tape a tiny bb to the place where I feel the lump. My breasts are then mashed between two transparent plastic plates, which the tech closes tighter and tighter with a foot pump. I don’t mind. I’ve been through so much worse. Just tell me I’m ok.

The perky tech lets me look at the pictures on digital screen. I see the bb is right in the middle of what looks like a small smiling scar. There are larger scars as well and I can see the row of staples that were used to hold the internal incisions together and are still there. I can’t see anything in any of the pictures that looks lumpish. I am relieved.

I asked the tech if she could have the mammograms read while I wait. But no, she says, the radiologist is not in. But, she says, (and this is important): “If there is a problem, we will call you in a day or two. Otherwise you will get the results in the mail in about a week.”

Do these people know how we whose lives are at stake here hang on every single word? Don’t they realize that what they say or don’t say is important? This is a Woman’s Center. This is a Mammogram Center. The last time I came for a diagnostic mammogram, I was diagnosed with cancer.

“Oh dear,” she says, hearing the word “diagnostic.” “This mammogram has not been tagged as diagnostic. If it’s not, your insurance won’t cover it, since it hasn’t been a year since your last one.” She leaves the room and comes back declaring that she has done something on the computer that has changed the tag from routine to diagnostic. Whew!

This tech, though seemingly awfully young, is courteous and kind and she lets me see all the pictures, which is a first, but she misspoke.

Week Five

9) I am feeling pretty stressed as I wait for my lab results, but I have been here before. As the days pass….day one, day two, day three, day four, day five….I begin to relax. After all, if something was wrong, they’d have called by now, right? That’s what the tech said and believe me, I was listening.

10) Day six, almost a week later (still no report in my mailbox), I get a call from the Women’s Center. I am to come back in for more tests right away. How about tomorrow morning at ten?

I stop breathing.

Somehow I manage to ask the caller if the mammogram had been positive, but she would not tell me. “I can’t give out that information,” she says. “You just need to come in for an ultrasound.”

This time, after I hang up, I lose it. Finally, for the first time, I weep. I weep just writing about it. I feel the blood in my body replaced by a gush of explosive anxiety. I call my brother. I call my girlfriend. I beg comfort from the man in my life. No one knows what to do with me.

11) Day Six of Week Five: I go back to the Women’s Center for an ultrasound. Two girlfriends have volunteered to go with me but, knowing that an ultrasound is painless, I turn them down. A mistake. When I am this anxious, I really need someone to be there, not just for support but to observe, be a second pair of eyes and ears, a witness. But I worry that I’ll break down and embarrass myself. I don’t want to be observed myself.

The tech for the ultrasound is a mature person who immediately tunes in on what I’m feeling. It turns out she is a two-year breast cancer survivor herself. I am by now having a hard time keeping it together. She does the test thoroughly and afterward I ask her if I will have to wait another week for the results.

“Probably,” she says. And I choke out, “I want to see them now.”

“I understand,” she says. “I’m not going to let you leave here like this. I’ll see what I can do.”

Not more than five minutes later (less time than I am usually kept on hold and subjected to staticky music and ads), the tech returns with the radiologist, who is looking annoyed. “Your tests are all fine,” he says.

“You mean, the mammogram was negative as well? No tumor?”

“Both the mammogram and the ultrasound were clear,” he says.

“If the mammogram was okay, why was I called back in?”

“It’s protocol,” he tells me. “If there’s a question of a lump, we have to do a mammogram and an ultrasound, followed by a visit to your doctor.”

“SO WHY WASN’T I TOLD THIS?”I ask. “Why was I led to believe that my cancer had recurred?” 

“It’s protocol,” he says.

And what was the lump?

“Scar tissue from the sentinel node dissection.”

Week Six

12) Normally after receiving good mammogram news—my “get-out-of-jail-for-another-year” card—I celebrate. I go out and party with my friends. This time, though, after calling whoever knew by now and letting them know I was okay, I still can’t stop shaking inside. I read online an article published online this very day about a study of the cortisol levels of women waiting for the biopsy results. Women who were made to wait over 5 days for their test results, whether the news was good or bad, had the same high cortisol (stress hormone) levels as women diagnosed with breast cancer. There was concern expressed that these high cortisol levels threatened these women’s resistance to disease and, if they actually needed treatment, made their recovery more difficult.

(Even without the two weeks I waited to begin this process, if I’d had to wait another week for the ultrasound results, it would have been a MONTH from my call to schedule a mammogram to the day I got my results! It’s not hard to imagine what my cortisol levels would have been then!)

This week, I find myself depressed and weepy. I do irrational things and take offense at things that, I find out later, have a much different explanation than I assumed. I come close to offending friends and clients. I work out at the health club four times this week, trying to let off steam.

Week Seven

Hallelujah, I am OKAY! At last, I am back to normal and feeling so lucky to be in this world and not re-diagosed with breast cancer. I decide it’s time I volunteered at the Literacy Center. Time I gave a party. Time I thank my friends and family for still being there.

Conclusion

•Bring a friend, especially if it’s a diagnostic test.
•Ask if there is anything you should know, such as the PROTOCOL for that procedure.
•Bring a friend.
•Insist on being treated humanely.
•Find a mammogram center that offers reasonably quick results. You’d be surprised how many centers there are within a four-hour drive—easily worth it to get that-day results—and they are competitive. Not all centers keep you waiting a week and insurance is good at all of them.

Now, I find that I really don’t mind that cold late winter weather. I’m reassured that my post-radiation treatment choice of careful diet (mostly vegan), exercise, and high quality of life really has been, for me, so far, the best medicine.

A NOTE: Yesterday I got my cell phone bill: $60 for overtime minutes, in addition to my regular bill, the first time I have ever paid for overtime minutes in two years.

October 2008 completes my 4th survival year!

Yes I am, thanks to early detection (I found the lump myself), an excellent surgeon who left me intact, the usual course of radiation, and a changed lifestyle. Because the usual post-op treatment Arimidex) froze up my joints, I have ignored Big Pharma (saving over $200 a month) and opted instead for a healthy diet (mostly vegetarian) and exercise. Today, four years later, I feel better than ever and find myself living every day as fully as I can, and thankful thankful thankful. So I am celebrating life, creativity, adventure, friends, and new opportunities.

Day 3 on my 2008 Vegan adventure

Two days ago I got such a craving for a tuna fish sandwich that I just up and made one: 1 can of light tuna in water, plus some Smart Balance mayonnaise, celery and green olives, all on my favorite bread, Brownberry (now Arnolds) Natural Wheat bread. It hit the spot. I’m not aiming for 100% vegan….more like 10% of my protein can be animal protein. Especially fish.

I liked Pacific Natural Foods Roasted Red Pepper and Tomato Bisque (vegetarian) so much that I tried their Organic Creamy Butternut Squash soup (vegan). I didn’t like it. Funny mouth feel and flavor.

I also tried the miso soup recipe on the back of the Hancho Miso container and I really didn’t like it. I was tasting it for hours. Oddly strong and still oddly tasteless to me.

Then I made Creole Black Bean Soup, an irresistible triumph from an interesting new cookbook called The Ethnic Vegetarian. It was sent to me by the author, Angela Shelf Medearis, who has a cooking show on PBS called Kitchen Diva, which is how I discovered her. I’ve made three dynamite recipes from the K. Diva: The Creole Black Bean Soup (page 70…makes a half gallon of soup, which is not too much, even for just me)…a grapefruit-avocado salad (page 67) also delicious, and a corn/black bean salad (which hooked me on her TV show), which was so good I ate it all in 24 hours.

Soy Foods: The Eeewwww! Factor

It can be hard to get past the eewwwww! factor when trying a new way of eating, but I’ve had plenty of practice. I have choked down horse meat in Switzerland, goat meat and cassava in Nigeria, seaweed and raw fish from Japan, and buffalo hump in Pakistan, and you know what? Once I got past the eeewww! factor, those were all pretty tasty. Lucky thing too: In every case, an easily-offended host was watching.

So here I am, looking (in private) at cartons of soy foods (eeeewwwww!): soy milk for my cereal, soy creamer for my coffee, soy cream cheese for my toast, soy tofu instead of meat. And you know what? Once I get past the eeewwwww! factor, my throat has begun to untighten, and my  eyes have even, occasionally, turned into happily triumphant half-moons. “Who’d a thunk it?” my dad would have said.

Here’s my soy report so far:

YUM (I will happily eat this again):
Vanilla Light Silk Soymilk on my favorite flax flakes cereal.
Plain Silk Creamer in my coffee (It doesn’t taste funny! I couldn’t believe it!)

YUK (Take it away! Please!)
Vanilla Light Silk Soymilk in coffee (undrinkable)

Yesterday I met my brother and his wife for a post-Christmas Sunday brunch in a restaurant with a great salad bar. I couldn’t resist half and half or an egg, but at home my ricenbeans and veggies prevailed. Tonight I have to bring food to a big New Year’s Eve party. I’m using up the last of my cream cheese to make my always snarfed up green chili/kalamata olive/tortilla pinwheels. I could use Tofutti Better Than Cream Cheese and no one would know the difference, but why waste the good stuff on people who’d gag if they knew?

A Running Start on my New Diet

What fun! I went to four ethic groceries today—two Indian, one Asian, and a Mediterranean—and a health food store. I came home with quite a few interesting possibilities: two kinds of lentils (red and yellow), a spice mix, a small block of Thai-spiced baked tofu, L’a’rabars, a tub of Better Than Cream Cheese, tubs of green and Kalamata olives, quinoa (a grain I’ve never tried), whole wheat tortillas, and a box of protein powder.

What I ate today:  Breakfast: Fabulous (vegetarian but not vegan) Pacific Roasted red pepper and tomato soup, 1 slice Arnold Natural Wheat Bread (the only kind of nationally available bread I like) with Better Than Cream Cheese and one sliced green olive. Lunch:  Home-made “Nigerian Baked Beans” (recipe from World Vegetarian by Madhur Jaffrey, p.57, a lot of work but very yummy), one slice Natural Wheat bread; Dinner: 1 microwaved sweet potato, cooked spinach with lemon, home-canned applesauce.

Vegan Vixen!

Last month I called a dear friend I’ve known for 60 years (who has survived breast cancer for 20) to wish her happy birthday, and she told me she’d become a vegan—no meat, no dairy. Good grief, I thought. She’s gone off the deep end.

“No dairy?” I inquired. “What about J.?”  (her breast cancer surgeon husband)

“He’s doing it too. You should try it!”

“What?” I cried. “Give up my two-gallon-a-week skim milk habit? Brie at parties? My Sunday morning egg?”

“It’s not so hard, really,” she said.

But I wasn’t convinced. It had to be hard. And I’d have to have a rocket lit under me to even consider it.

I could deal with the meat part. About nine months ago, several books inspired me to go (mostly) vegetarian, most notably The Omnivore’s Dilemma by Michael Pollan. I traded in meat for beans, exploring ways to cook beans to avoid my usually uncomfortable and embarrassing explosive reaction to them. After multiple disasters, I succeeded: Basically I double-soak all dried beans or lentils, once overnight and once on the stove. Get the details on my HealthCentral.com post called Beans: My Shape of Beef to Come. I have fallen in love with beans and rice, for which there are thousands of tasty yummy satisfying to even the critic in me recipes. And I’d eat anything I wanted when a guest at parties or restaurants, which wasn’t usually more than once a week.

But now, the fire under me has been stoked:  The China Study by T. Collin Campbell (see also my review) has fueled me with enough motivation to try eating vegan (no animal protein), but with three caveats: 1) I restrict my diet to vegan (plant-based) only at home;  2) I keep my morning coffee cream, and 3) I get to reconsider in 3 months.

I’m going to blog my successes, failures, discoveries and frustrations right here on my breast cancer blog. Want to try this with me? If you’ve read The China Study and are convinced that a plant-based diet is a good idea for breast cancer survivors, please email me and let me know your issues and discoveries. Also let me know if I can share your comments or if you’d prefer they remain between us.

And a special thank you to Marisa Acocella Marchetto, author/artist of Cancer Vixen (another must read for all us breast cancer people—not just survivors, but the friends, family and health professionals who deal with us) for inspiring my “Vegan Vixen” title. I really love her work. My blog fans can read my review of Cancer Vixen here, and don’t miss Marisa’s fabulously illustrated new breast cancer blog.

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My First Breast Cancer Blog Entry in Six Months!

I just read The China Study, by T. Colin Campbell, probably the most highly credentialed researcher who has ever studied the correlation between animal protein and the diseases of affluent societies: Cancer, heart disease, diabetes, and many others. This man has worked from MIT, Virginia Tech, and at the top of our government health agencies. What he has to say about animal protein and breast cancer is going to make a vegan out of me.

A vegan? Oh no! Have I gone out of my mind? I’m the one who has downed two gallons of skim milk a week for almost my entire adult life! I have given up most meat in the last year, but I replaced it with dairy. Bad move, says Dr. Campbell. His book has convinced me that the amount of meat and dairy a country consumes correlates shockingly with the amount of breast and other cancers suffered by that population.

I am so impressed that I am going to try to go vegan (no animal protein), at least at home. Sigh. No more cheese? No more milk? I don’t know how I’ll do it, but what a no animal protein diet promises is worth a try. I am going to start January 1st, and my New Year’s Resolution for 2008 is to eat a vegan diet at home for three months. If I find I just can’t do it, I’ll quit or modify it.

I plan to continue my breast cancer blog this year, journaling my successes, failures, and frustrations with a vegan diet, and any other related struggles. Please tune in! You can respond (no public response is available on my website yet) by going to the Contact page on this website.

Dr. Campbell sells no products other than this book. He has nothing to gain, no programs to buy, no diet books to reap millions from. 

Why has no doctor given me this book? Why isn’t it making headlines around the world? Could it be $$$$$$$$$$$$$$$$$$$$$? Whoever you are, whatever your present health, please read this book and then decide for yourself. The life you save might be your own.

Tonight: Breast Cancer Fund Raiser Show in Bay City

Also perusable will be my 200+ page illustrated breast cancer blog begun after my diagnosis in October, 2004, and continuing to the present. It can be read online as well, beginning with Mary’s Breast Cancer Blog, on my website, continuing for a year elsewhere, and recently returning to my own website at beaverislandarts.com.

Tonight is a gala event—a cancer fund raiser. Cancer surviving artists will be displaying their work at all the galleries. This very special First Thursday Gallery Walk is the only one that requires a ticket: $30 gets you in all the galleries with gourmet food and drink; $5 gets you in one gallery, so if you just want one party, make it mine! (Tickets will be available at all the galleries.) After tonight, the monthly First Thursday Gallery Walks will again be free.

The Bay City Times did a nice article about me and this show in the Thursday Weekend. You can read it online if you can stand the many disruptive animated ads….. 

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