Essay of the Whatever

Originally, we called this “Essay of the Week.” Honest, our intentions were pure. But then life kept intervening–kids, jobs, blahblahblah. And sometimes, the Muse just didn’t strike. (And by “Muse” we mean that we got sidelined by the finale of “So You Think You Can Dance,” or a deeply satisfying sexual fantasy of being frosted–if you catch our drift–by Duff Goldman’s Ace of Cakes, or a sudden need to spend long hours inspecting the worrying growth of hair in non-scalp areas, and other familiar roadblocks on Highway 101 of the Creative Life.)

So we’ve decided to offer these essays on an irregular but passionate basis–when we’re inspired, mad, morose, psyched, pissed–whatever runs the emotional gamut from “I” to “P”. Feel free to use a more expansive alphabet of emotion when you tell us what you think.

Want to submit your own essay? Send it to us here.

The Dark Place I’ve Been

by Janet on May 5, 2012 · 7 comments

Last summer

“Mo-o-o-o-O-O-O-O-o-o-o-o-mmm!!!” My newly-minted thirteen-year-old dragged out my moniker with all the  exasperation his age can bring to verbal expression. I don’t remember my crime that elicited such irritation. Kirby hopped on his bike and took off, leaving me standing in front of the Country Store with a bag of snacks. Charming, I thought. What a lovely way to begin our first vacation in two years. I climbed aboard my bike and began the pedal back to the rental house.

We were in Sun River, Oregon: a lovely vacation community threaded with over 18 miles of paved bike paths. Lots of visitors park their car on arrival and don’t use it again until they depart. Families achieve this because by and large, Sun River is flat as a pancake. My personal plan for this vacation was to spend as much time biking and walking as conceivably possible.

The catch, I learned that first night, was the mammoth gap between what I believed possible and what I could actually do. As I biked back to the house, I discovered something rather dramatic: Sun River isn’t all flat. In fact, there is a very slight upward incline between the Country Store and our rented house. A person driving a car wouldn’t notice. A pedestrian wouldn’t notice. A bicyclist wouldn’t notice. Except: I noticed.

I noticed because I was unable to make my foot push the pedal down to make the wheels go around uphill. I sweated, grunted, panted, and finally cried because no matter how hard I tried, I could not make the bike go uphill. Even though it was a tiny little hill. If Guinness kept a record of the littlest hill, this hill would be a top contender. And I could not ride up it.

I pushed the bike home, getting lost several times on the way, frantic with worry that Kirby had also gotten lost. I burst into the house to find him and Roger calmly eating popcorn and watching television.

“Are you okay?!” I demanded.

Roger and Kirby looked at each other, slightly puzzled. “We’re fine.”

“Well. Well fucking done!” I screamed. I ran into the bedroom, threw myself on the bed, and sobbed.

Yes, it was incoherent to them as well.

The next day, I got an email from my endocrinologist telling me that I have severe adult onset human growth hormone deficiency. Before he tested me for this deficiency, he told me he would not treat me if I turned out to have it. Why? Because I am a breast cancer patient. Both the FDA and my doctor, who happens to be one of the leading experts on adult onset human growth hormone deficiency (I’d like to buy an acronym, Bob, but AOHGHD isn’t working for me…), do not like the idea of giving growth hormone replacement therapy to someone whose cells have a proven proclivity to go a little wild with the growth thing.

In other words: I was fucked.

I immediately called my doctor’s office and requested an appointment to go over the test results with my doc. I learned he was out of the country until September, and upon his return, he was booked up through the end of October. I asked if there was someone else who was covering his practice that I could see. I explained that my test results had upset me deeply and I wanted to discuss treatment options. I was told that nobody but my doc would discuss my case with me. Sobbing, I booked an appointment at the end of October and asked to be put on the waiting list for an earlier appointment.

A brief recap of the preceding five years.

Personal health issues:

  • June 2007: Thyroidectomy for goiters
  • November 2007: Hysterectomy for fibroids growing out of control
  • June 2008: Oophorectomy for cystadenoma of the ovaries
  • July 2009-November 2009: Lumpectomy for breast cancer, adjuvant radiation treatment. Ongoing oral chemotherapy to keep the sucker from coming back.
  • (At this point, my cells have clearly shown they can go a little bonkers with the grow-like-crazy stuff.)
  • June 2010: Concussion due to a trip-and-fall face plant on the front walk. The silver lining to this was it led to my quitting the soul-sucking job from hell.

Other life issues:

  • November 2006: Roger was fired from his job. He became part of a startup software company that has yet to produce a living wage for any of its four partners. I assumed the position of Primary Wage Earner, he assumed the Primary Care Giver role.
  • Fall 2009: Kirby begins exhibiting symptoms of illness.
  • February 2011: Kirby is finally hospitalized for three weeks. After his discharge, he continues to receive treatment. He is making the kind of progress that makes me weep with pride almost daily. That’s all I’ll say about his issues because that’s his story to tell. Parenting a child with a disabling illness is truly the hardest thing I have ever done.

I spent most of that vacation online, researching growth hormone deficiency. My first question was: WTF? I’m all done growing. Why do I care about growth hormone? Turns out that in adults, growth hormone helps the body produce muscle and break down fats. Oh. Now, I care a lot. Without this hormone, I’ll have more fat and less muscle. Bah. Plus, because the heart is a muscle, there is increased morbidity due to cardiac issues.

Adult Growth Hormone Deficiency (GHD–a little acronym, thanks) has a symptom set similar to those common to women in mid-life. Notably, its symptom set is remarkably similar to thyroid-free women leading the estrogen-free breast cancer patient lifestyle.

Here’s a symptom list* with an example of my experience of the symptom.

A higher level of body fat, especially around the waist
Um, sure. I gained 30 pounds, largely in my abdomen. My neck, head, arms, and legs still look normal, and I have always worn loose clothing, so nobody noticed the 30 pound gain.

Anxiety and depression
To say that I’ve had issues with anxiety and depression is like saying Noah had issues with water. I have struggled with depression all my life. Each iteration has been a little different. This iteration brought constant thoughts of death along with a physical pain, as if a corkscrew were twisting through my gut, doubling me over as it pulled tighter at the cork.

Changes in the make up of the blood cholesterol.
Yes. Overall up from 160 to 203.

Decreased sexual function and interest
Like I’d notice after all my estrogen went away?

Fatigue
Gosh. The non-optional 8:30 bedtime was a symptom? Who woulda thunk it?

Feelings of being isolated from other people
Funny how when you’re feeling fat, depressed, and exhausted, you don’t generally want to go to book group or call a friend.

Greater sensitivity to heat and cold
Um, sure. And I would differentiate this from my thyroid issues exactly how?

Less muscle (lean body mass)
Does less muscle go along with weight gain? How would I tell?
Less strength, stamina and ability to exercise without taking a rest
This symptom gave me more clues. Running errands at lunch was not possible. Working a 4-day week was great, I could spend the next three days sleeping and recovering so I could do it all over again. I could no longer carry a full basket of clean, folded laundry upstairs without pausing to catch my breath halfway.

Reduced bone density and a tendency to have more bone fractures
Due in part to the aforementioned estrogen-free lifestyle, I have lost 20% of my bone density in the last two years. Luckily, at age 50, I had the bone density of a 19-year-old. So, while bone loss has been significant, I’m still within normal ranges for my age.

We returned from vacation and I went about my life, waiting for that end of October appointment. About a week after we got back, I felt particularly awful at work. My hands were tingling and numb. I was dizzy. I fell over and a wall caught me. My neck and shoulders hurt more than usual. I called my doctor’s office and begged to see any endocrinologist, immediately. The receptionist told me to go to the emergency room.

At the ER, an EKG showed an anomaly in my heart. My T-waves were inverted. This is really bad, but I forget why now. I was held overnight. I was still alive in the morning, and now the EKG was showing normal results. I was instructed to follow up with my regular doctor.

I filled my regular doctor in on the situation and burst into tears. She is nothing less than a lioness of medical care. She sent me for a stress echo cardiogram because she thought there was nothing wrong with my heart. She also contacted my oncologist, looping in my missing endocrinologist, to request that he comment on treating the GHD given that I don’t have any active malignancies and have a deficiency level that is defined as “severe”. She assured me that if my current doctors would not treat the GHD, she would assist me in finding care elsewhere, either in California or Canada. I was looking at the possibility of becoming a medical tourist, wondering how I was going to do that and continue supporting my family.

I flunked the stress echo. I added two cardiologists to my medical team. They ran a regular echocardiogram because stress echocardiograms can be unreliable and a regular echocardiogram is less stressful than an angiogram. The goal of the regular cardiogram was to confirm or deny the results of the stress echo. I passed the regular cardiogram with flying colors. They put me on statins to lower my cholesterol, beta-blockers to reduce my blood pressure and let my heart rest between beats. I argued hard against the beta-blockers: my BP is generally about 105 / 60. High BP was not the issue, and the side effects of beta-blockers include depression and fatigue. Finally I agreed to try the beta-blockers. A month later, all seemed well, so the cardiologists tossed me back to the care of my regular doctor.

In the meantime, I continued to make a total pain in the ass of myself at the endocrinology office. My appointment was moved forward to early October, but after the cardiac incident, I harangued the poor receptionists until they put me on a “Doctor will call” list. I managed to get in to see my doctor the third week of September, immediately following his return to the country.

Roger went with me. I wept and begged for GH replacement treatment. I told him I was afraid that the GH deficiency had caused my cardiac event. He replied, “I don’t want to be the guy who prescribes the drug that brings your cancer back.”

I replied, “That’s not actually your decision to make. I have no active malignancies, and that’s the only FDA contra-indication. You won’t be prescribing off-label. If the cancer comes back: so be it. We’ll fight it then. But I cannot continue to live my life the way it is now. There is no joy, no energy, and frankly, I wish I were dead most of the time. Maybe if the cancer comes back due to GH treatment, I’ll have a shorter life. But I’ll take it shorter and better rather than longer and awful. I’ll take quality over quantity any day of the week on this one.”

My oncologist had weighed in and said he had no issues with using GH replacement therapy to restore me to normal GH levels.

The endocrinologist agreed to try treatment for 9 months to see if I showed any improvement without the cancer returning. I agreed to faithfully honor my adjuvant cancer treatment program.

Thus began the insurance company struggle. Treatment can cost up to $33,000 per year. Their initial response, which took over a month to give, was to refuse to pay.

This, at least, made me eligible for free treatment from the drug company, who has a program for people who are below a particular income level and don’t have insurance coverage. I started treatment on November 1st. I was told it could take 6 to 9 months before I noticed any improvement.

I did not notice much improvement at all in the first three months. Then, someone sent me a link to the NY Times article on the damaging effects of statins on muscles. SHIT. I called my regular doctor and asked her if I could drop the statins. My last metabolic panel had showed an overall cholesterol of 120. She agreed that we could drop the statins and beta blockers.

Now that I’m off them, I am starting to see real change. I can stay awake until 11pm. I can run errands at lunch. I can visit with a friend after work. I don’t cry as often. The gut-twisting pain from depression is gone. I believe I’m strong enough now to take on the Primal Challenge to see if I can start to regain my strength. I’m not sure, but I’m going to try.

I have been in a very dark place these last 9 months. The worst part of the dark place has been the hopeless inability to push the bicycle pedal to make the wheels go around uphill.

I have a much-loved friend who says, “It’ll be okay in the end. If it isn’t okay, it isn’t the end.”

And so, this is not the end.

 

*Source: http://www.cedars-sinai.edu/Patients/Health-Conditions/Adult-Growth-Hormone-Deficiency.aspx

 

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Wheat Belly by William Davis, M.D.

by betsy on February 29, 2012 · 0 comments

Wheat Belly: Lose the Wheat, Lose the Weight, and Find Your Path Back to Health by William Davis, M.D.

On March 1, 2012, we begin a Two-Week No-Wheat Challenge adapted from Dr. Davis’s book. I’ll summarize Dr. Davis’s arguments below, but I recommend you get yourself a copy (you can hit the link above) because he delves into the science behind wheat metabolism and its effects.  It’s fascinating stuff and explains a LOT about why a bagel puts me into a virtual coma.

Why are we getting so much bigger when we’ve been trying so diligently to eat only whole foods and complex carbs?  “It’s more accurate to say that the advice we’ve been given to eat more ‘healthy whole grains’ has deprived us of control over appetites and impulses, making us fat and unhealthy despite our best efforts and good intentions,” writes Davis.  The big culprit is in the inflammation and insulin spiking caused by foods that break down quickly into high blood sugar.

If high blood sugar is the problem, why not just, say, give up sugar?  Because modern wheat is unique in its ability to convert quickly into blood sugar, and not making your insulin levels spike is the name of the game here. Okay, we know all the sugary stuff is bad because it, duh, converts into blood sugar.  But gram for gram, wheat—in its modern form—increases blood sugar almost as much–and more than the complex carbs in bananas, beans, and potatoes.  “Aside from some extra fiber, eating two slices of whole wheat bread is really little different, and often worse, than drinking a can of sugar-sweetened soda or eating a sugary candy bar.”

So the deal is, you want to eat foods with a low Glycemic Index (GI), because they don’t raise your blood sugar as much.  In theory, high blood sugar is what promotes diabetes and inflammatory illnesses like ulcerative colitis and arthritis.  More than that, foods that have high GI counts give  you those highs and lows—the intense food cravings, deep hunger, and “sugar coma” you feel in the late afternoon after that unfortunate Snickers attack.  All your favorite White Devils—wheat, rice, sugar, potatoes—have high GI counts.

“Wheat belly. Pretzel brain. Bagel bowel.  Biscuit face.” Yeah, they’re all real things.  Davis says that “wheat belly”—the excess of “visceral fat” that rises, Phoenix-like, above your waistband—can disappear in weeks if you go wheat-free  In fact, Davis claims you can lose ten pounds in two weeks by going really, completely wheat-free. Davis also offers evidence that wheat ages you, clogs your heart, fogs your brain, makes your skin break out (or worse), and makes you lose your hair! Hmm, you’ve got my attention.

“Be gluten-free but don’t eat ‘gluten-free,’” Davis advises.  Gluten is a culprit, but not the only culprit, in wheat.  So if you shop only in the “gluten-free” aisle of the store, you’re apt to scarf up products filled with powdered rice starch, cornstarch, potato starch, and tapioca starch—all rapidly absorbed carbs that convert into blood sugar and dump more fat onto your muffin-top.

So, let’s begin, shall we?  What do expect?  “Approximately 30 percent of people who remove wheat products abruptly from their diet will experience a withdrawal effect….fatigue, mental fogginess, and irritability…and a feeling of low mood and sadness.”  Um…bummer.  Apparently, this can last two to five days;, during which time your body is getting used to “mobilizing and burning fatty acids instead of more readily accessed sugars,” so I’ll allow it.

Here’s a summary of the actual eat this/not that recommendations:

Go Bat Shit Crazy With These!

  • Vegetables (except starchy ones like potatoes and corn).  Mushrooms included
  • Raw nuts and seeds
  • “Good” oils like extra virgin olive oil, avocado, walnut, coconut, flaxseed, sesame
  • Meats and eggs—preferably free-range and organic.  Shellfish included
  • Cheese
  • Non-sugary condiments
  • Also:  Avocados, olives, coconut, spices, unsweetened cocoa or cacao, flaxseed

Have a Little, Not a Lot

  • Non-cheese dairy—milk, yogurt, butter, cottage cheese
  • Fruit—too much makes your blood sugar soar. Berries are best. Have a few slices of apple, not the whole shebang
  • Whole corn—not corn products!
  • Fruit juices—2 to 4 ounces of 100% fruit juice is okay
  • Non-wheat grains—My beloved Costco quinoa, as well as sorghum, buckwheat, millet and oats are better than wheat, but stick to less than ½ a cup
  • Rice—Best of all to cut out white, brown and wild rice.  If you must, limit to ½ a cup per meal or you’ll send your blood sugar into the stratosphere
  • Soy products—tofu, tempeh, miso, natto, edamame, soybeans

Get These Gone, Satan!

Davis also recommends you cut out:

  • Cornstarch and cornmeal—farewell tacos, tortilla chips and breakfast cereals
  • Rye, bulgur, triticale, kamut, barley
  • “Bad” oils like hydrogenated or polyunsaturated.
  • Snack foods—goodbye potato chips, rice cakes and popcorn
  • Desserts—duh
  • Potatoes—no to white, red, or even orange
  • Legumes—If you must, no more than ½ a cup
  • Gluten-free foods—read the labels and don’t eat stuff with starch made from rice, potato, corn, or tapioca
  • Soda
  • Dried fruit—sorry to tell you that those cranberries, raisins, figs, dates, and apricots are too sugary
  • Anything fried

But What About Booze, Doctor?

Obviously, beer is out because it’s pretty much always made with wheat.  Red wine—a little bit—might be okay; jury’s still out.  I was shocked!  Shocked!  that tequila and vodka aren’t even in the index!

My Game Plan

Davis’s book has meal plans and recipes, another reason why I think it’s worth a buy.  I went to Costco and stocked up on organic spinach and salad, tomatoes, salsa, salmon, tuna, steak, organic chicken, basil pesto, cheeses, cucumbers, celery, hummus, carrots, olive tapenade, bruschetta, organic eggs, and almonds.  Rumor has it that Trader Joe’s has flaxseed tortillas; I’ll have to read the labels and see if they’re kosher.

My plan is to be super-adherent the first four days—basically a ton of veggies along with fish, chicken, shrimp, or beef, with lashings of nuts and cheese.  I don’t want to screw around with a half-cup of the “kinda sorta okay” foods until after that.  Davis lets you have 1 or 2 squares of dark chocolate (he likes Lindt 90 percent), but since I’ve been feeling so much better off sugar, I’ll skip that. Maybe after Day 4 I’ll have me a glass of red wine.

My plan is to have  one of my favorite breakfasts often:  two eggs made with Pam on a bed of thawed frozen spinach.  Lunch and dinner will be salads, veggies, and fish/chicken/beef/shrimp.  Snack will be celery or carrots with hummus or some almonds. I’m going to stick with natural, unprocessed stuff as much as possible instead of trying to track down all those nonwheat crackers, etc.  I think I’ll feel better.  I remember when I was on Atkins that I spent hours upon hours reading labels and totting up “net carbs” and I just don’t want to go back to that dark place.

Good luck!  Shoot me your questions and I’ll research them!  And let me know how you’re feeling!

xxoo,

Betsy

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The 4-Hour Body 31-Day Challenge!

by betsy on February 23, 2011 · 6 comments

We’re devoting March 2011 to Tim Ferriss’s 4-Hour Body (4HB) Challenge.  Climb aboard!


PREPWORK

Step 1)  Order Tim Ferriss’s The 4-Hour Body: An Uncommon Guide to Rapid Fat-Loss, Incredible Sex, and Becoming Superhuman and check with your doctor

Step 2)  Measure yourself. Tim Ferriss strongly recommends blood work and more sophisticated fat measurements (DEXA et al).  I know myself, I’m a lazy sort, and I’m going with ye olde tape measure.  BUT YOU MUST MEASURE BEFORE YOU START.  Tim says this is one of those diets where you could shed inches before the pounds register on the scale.  Don’t cheat yourself out of the triumph or motivation to continue—measure first!  For more motivation, take “Before” photos.  Post ‘em if you’re REALLY brave!

Step 3)  Consider the supplements. I’ve decided I’m going to try the PAGG route.  I’m reprinting below the correction on Tim’s blog (http://www.fourhourworkweek.com/blog/category/the-4-hour-body/

Policosanol: 20–25 mg
Alpha- lipoic acid: 100–300 mg (I take 300 mg with each meal, but some
people experience acid reflux symptoms with even 100 mg)
Green tea flavanols (decaffeinated with at least 325 mg EGCG):
325 mg
Garlic extract: at least 200 mg (I routinely use 650+ mg)

Prior to breakfast: AGG
Prior to lunch: AGG
Prior to dinner: AGG
Prior to bed: PAG (omit the green tea extract)

Tim lists resources on his website (he gets no kickbacks).  Janet pulled together an Amazon Listmania listicle with the book and supplements so you can do one-stop shopping:

4HB Challenge List: The book, the supplements

Here’s what I bought:

Jarrow Formulas Ultra Policosanols, 10 mg $23.95 for 100 softgels; I’ll take two per dose

Bluebonnet EGCG Green Tea Leaf Extract, 200 mg $12.95 for 60 capsules; I’ll take two per dose

365 Alpha Lipoic Acid, 100 mg $5.99 for 90 tablets; I’ll try three at a time to start but watch for acid reflux)

Nature Made Odor Control Garlic 1250 mg garlic equivalent, Costco, $12 for 300 tablets

You do this six days a week, with one day off, then take one week off every two months. Tim says that week off is critical.

Step 4)  Read the “Rapid Fat-Loss” pages in 4HB (98 pages) The basics of the Slow-Carb Diet begin on p. 70.

BASICS OF THE SLOW-CARB DIET

Rule #1:  No White Devils. Yeah, you guessed it—no white bread, rice (including brown), cereal, potatoes, pasta, tortillas, etc.

Rule #2:  Eat the Same Meals Over and Over

Each meal needs a lean protein (organic eggs or egg whites, chicken, grass-fed beef, fish, pork), a legume (lentils, black beans, pinto beans, red beans, soybeans) and a veggie (spinach, broccoli, cauliflower, sauearkraut, kimchee, asparagus, peas, green beans). Aim for 20 grams of protein per meal; try for 30 grams for breakfast.

Eat meals four hours apart.  For me, that would be:

7:00 am – breakfast (eat this within an hour of waking, preferably within 30 minutes)

11:00 am – lunch

3:00 pm – second lunch

7:00 pm:  dinner

Rule #3:  Don’t Drink Calories

Have as much water, unsweetened tea and coffee and other no-cal drinks.  NO milk (not even soy milk), no sugary soda, no fruit juice.  Tim avoids aspartame; he says it can “stimulate weight gain”.  Tim also has one or two glasses of red wine a day; he says it doesn’t seem to interfere with fat loss.  I say spot yourself on this; if drinking wine makes you eat crap, avoid.

Rule #4:  No Fruit

Tomatoes and avocadoes are okay.  Tim says the fructose in fruit leads to fat storage.

Rule #5:  Take one Dieters Gone Wild Binge Day a week.

Anything goes here.  No calorie counting.

SOME REFINEMENTS:

Potassium/Calcium/Magnesium: Apparently you lose more water/electrolytes on this diet, so Tim suggests supplementing.  Check with your doctor.  I’m going to be vigilant about taking my multivitamin.

Expect “Massive Weight Fluctuations” after Cheat Day. Up to 8 pounds for women!

No Whole Grains or Oats

DAMAGE CONTROL FOR BINGE DAYS:

  • Make sure the first meal isn’t a binge meal
  • Drink a small glass of grapefruit juice before your second meal—the first crap meal
  • Use the supplements
  • Consume citric juices
  • Drink caffeine and yerba mate tea so you poop more
  • Do 30 or so air squats, wall presses, and chest pulls BEFORE you binge

Honestly, the book has a ton of info and great links for even more details, so definitely check it out, but these basics will get you started.

I definitely recommend checking out Tim’s blog–(http://www.fourhourworkweek.com/blog/category/the-4-hour-body/

He gives in-depth answers to a ton of questions and there’s great reader feedback.

Beloved BYT Poster Beez dug up this handy-dandy cheat sheet:



{ 6 comments }

Bitch Yourself Joyful

by betsy on November 28, 2010 · 4 comments

Man, winter sucks. With darkness closing in around 4:30, I’ve found my brain sun-downing simultaneously, my energy fleeing, my body ready for bed at around, oh, 7:30 pm.  Janet’s scale has gone on strike, refusing to budge for the last few months beyond a parsimonious two-pound swing.  Two ailments, but only one diagnosis:  Not enough joy.

So we’re going to try something different for December.  Instead of trying a new exercise video or logging what goes into our pieholes or testing out some goofy new Shiny Object of a diet, for 31 days, we’re going to inflect ourselves toward joy.

Janet’s going hard-core, because that’s how she rolls.  Instead of posting her weight, every day she’ll be sharing a Joy Report describing a joyful activity from the previous day.  She’s committed—we’re talking 20 minutes of joy minimum, no excuses. Whenever she feels like stepping on the scale, she’ll do that, but we’re out to test the theory that when you’re really serious about moving toward your right weight, your right life, your right whatever, you really have to get serious about having a shit-ton of fun.  When you’re stuck, you need to remind yourself daily that you’re a playful person with choices. Get that going on, and the pounds will take care of themselves.

When you get your joy on, you won’t try so hard to find it in the Double-Stuf Oreos or nacho platter that makes you feel lousy ten minutes after it’s gone down the hatch.  You won’t “need” that Devil’s Lemonade to “recover” from a crap day. You’ll savor what you do choose to eat and drink.

Years ago, I edited a wonderful book by Martha Beck, The Joy Diet: 10 Daily Practices for a Happier Life, in which Martha describes the 10 daily practices she enjoys to remind herself that every day is another chance to reward and romance your soul.  Two years ago, I started a month-long course called JoyQuesters, which I now run with fellow life coach Michael Trotta, designed to get folks to remember the joyful, creative, playful creatures we all were, are, and are destined to be.  For December, we’ll play with the ideas from both these playgrounds and see what happens.

I’m going to be issuing a daily Joy Jump-Starter—a suggestion for you to play with.  Do it if it feels fun, but for god’s sake, run for the hills if it doesn’t ring your bell.

Wanna join us for the December Joy Report?  Who’s in?

xxoo,

Betsy

{ 4 comments }

What I Learned from Breast Cancer

by Janet on October 11, 2010 · 2 comments

Tuesday, July 28th, 2009
2:45 pm

“Y’know,” my young, gorgeous surgeon said, as she cupped my breast in her hand, “I don’t think your breasts are all that small.”

What?! This was the most amazing thing I’d ever heard in my life.

My breast inferiority complex started at home. My mom and sister had much bigger boobs. My dad, inappropriately, liked to point that out, and tell me I looked like a boy. Cue: body issues, enter stage right.

I never found bras that fit. I’d go into the store, try to find the smallest versions of an A cup, and sneak furtively into the dressing room with a dozen or so to try on. I can tell you which brands are generous in their interpretation of A cup (Bali), and which might actually fit me (Maidenform occasionally.) Once a dressing room attendant tried to help me. She looked at me in the bra I’d decided would do, and said, “Oh, honey, no, when it puckers and folds over on top, that’s not a good fit.” A good fit was not found that day.

I was in bed with a guy. He said he loved large breasted women. I was puzzled. I asked, “Do you think my breasts are large?” What did I know? Maybe everyone else he’d dated was a Lilliputian. He replied, “You have great legs.” Oh. Nope, he’d dated other women with real breasts. That was the last time I saw him.

On July 20th, 2009, I got a phone call at 11:13 am telling me that I had an invasive ductal carcinoma. Three hours later, my husband and I sat in the office of Martha, the Wonder Nurse, my Breast Advocate, who carefully explained the pathology and my treatment options. She asked, gently, “What’s your cup size?”

“Er, it’s easiest to describe as Minus A,” I replied.

“Yes, I thought you might be rather small breasted. Sometimes, a lumpectomy isn’t an option for small breasted women because there’s isn’t much left over,” Martha explained. “It can be better to go to a mastectomy in that case, because then you don’t have to do radiation therapy.”

That was the question my surgeon answered: Was my breast so small as to not be worth the bother of trying to save, given that saving it would mean a more arduous treatment? I was prepared to sign up for the bilateral mastectomy–heck, lop them both off. Nobody would notice.

The first thing I learned from breast cancer: My breasts aren’t all that small.

I opted for the lumpectomy with radiation option. The jury was out on whether or not I’d need chemo. Every doctor who looked at the initial pathology report said I probably wouldn’t need it. After surgery, I met with my medical oncologist. She said that my pathology was unclear: nobody could give me a clear indication of whether or not chemo would help more than it would hurt. There are some very nasty side effects involved in chemo, it’s better to not do it if you don’t have to.

My med onc encouraged me to sign up for the TailorX study, a huge study being run by the National Cancer Institute, to determine the benefits of chemo in cases like mine. In order to participate, I agreed to one more test, an oncotype test. This test looks at the expression of certain genes in the DNA and gives a score as its result. If the score is less than 11, no chemo is needed. If the score is greater than 25, chemo provides an obvious benefit. A score between 11 and 25 is the study’s sweet spot. For women who score in that range, the benefit of chemo is unknown. Women in the study who fall in that range are randomized to either receive, or not receive, chemo, through the luck of the draw. My med onc encouraged me to participate so that the cost of the test (three grand) would be covered. And, she pointed out, why not leave the decision to chance, given that nobody knows the answer.

I said, okay, and signed a bazillion disclaimers that let them keep tissue samples of me forever and share medical info and all that. I don’t really care. I just knew I was having a heck of a time figuring out if I should or should not have chemo, so: why not.

The oncotype score came back. I scored: 24, and I’d randomized to not have chemo. HOLY SHIT!!! Suddenly, I wanted chemo. I wanted it more than anything. My husband said, “Sometimes, when you get the answer you don’t expect, you figure out the answer you really wanted.”

I called every doctor I ever knew and asked their opinion. I hit up residents on the elevator: “Hey, if you had an oncotype score of 24, would you go for chemo? Or would you skip it?”

The second thing I learned from breast cancer: I wanted to kick it in the ass. Really, really hard. That reality contained a corollary lesson. I did, in fact, want to live. (The jury had been out on that one.)

Most of the doctors said they’d skip the chemo. The side effects can be devastating. One doctor abstained from giving me an opinion, saying she was not well informed enough to give one. The best opinion I got came from Martha, the Wonder Nurse. She explained it thus:

Suppose you don’t get chemo. Then, 10 years from now, if you have a relapse, you’ll bash yourself, telling yourself that you should have had chemo back then. But really, no doctor in the world will be able to say definitively that you’ve relapsed because you didn’t have chemo, and that you would not have relapsed if you’d had it. They just won’t know.

The third thing I learned from breast cancer: When doctor’s say, “I don’t know” that the breadth and depth of what they don’t know is mind boggling. They mean it when they say “I don’t know.” I let the study roll the dice for me, and went the no chemo route.

In addition to the support I’ve received from this blog, I also got support from an online group on Ravelry, Knitters with Breast Cancer. Through that group, I met (online) an amazing woman named Treena. She’d been diagnosed with Inflammatory Breast Cancer while pregnant. She went through treatment, had a mastectomy, and was still able to nurse her daughter with her remaining breast. A few months after I met her, her cancer relapsed. She died. Her daughter was two at the time of her mother’s death.

The fourth thing I learned from breast cancer: I am not immortal. One might think I’d have learned this earlier in the process, but no. In fact, I’m still not sure I fully believe it. I’ve landed in a weird place, where I’ve survived the first round of treatment and am “cancer-free”. I think I won’t die of cancer. Treena reminds me that this is a fatal disease.

I am now on a drug therapy that will go on for quite some time. The drug, an aromitase inhibitor, prevents output from my adrenal system from turning into estrogen. The tumor was estrogen positive, which means that estrogen binds to the cancer cells and helps them grow. I am now leading the estrogen-free lifestyle.

There are some down sides to the estrogen-free lifestyle. Any one of us gals who has been through menopause will report on the increased difficulty of losing weight. When living totally estrogen-free, one gets additional bonuses such as bone density loss, joint pain, and waking up to hands and feet cramped into arthritic, crab-claw stiffness that can take anywhere from a few minutes to a few hours to wear off. I have gained about 7 pounds while on this medication. The docs won’t list weight gain as a Real Side Effect, they’ll only say it seems to happen to some women on the medication. My personal theory is that they won’t list it as an actual side effect because there are so many women who would rather be dead than fat.

In September, I started training to run a 5K race with two friends. I am being exceptionally careful, fearful of damaging my more-delicate joints. I have good shoes, I only run on a track. I fully anticipated that running would get me over the estrogen-free weight-loss stall. It has not. In the past week, I have pinged both my med onc and my GP doctor with the question: Why is it that if I’m eating pretty healthfully and increasing my exercise that I’m not losing weight? The med onc rolled his eyes and said, “yeah.” My GP doc ran some thyroid tests with the result that the numbers are all within normal range.

The other day, I stood in front of the bathroom mirror–post-shower, before getting dressed. I took a good look at myself. And thought: okay. I can live with this. I may never lose another pound, but I’ve never stopped being who I am because of what I weigh.

The last thing I’ve learned from breast cancer: I am better fat than dead.

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