The Oncology Oracle Speaks

 I was so fortunate that my oncologist had an opening first thing Monday morning.  The waiting is the worst of any of these processes.  The data and opinions I’ve been accumulating over the past month gave me valuable perspectives I would not have otherwise considered.  It’s important to follow your gut, but equally important to know that the gut and brain are closely connected.  The more relevant information I have, the more reliable my gut will be.

Here’s some of what we covered, and other tidbits I’ve collected:

What lowers my risk factors:

• I did not test positive for BRCA genes
• Keep my vitamin D levels in a high zone (50-60)
• I finally got my lazy butt up and participate in a regular exercise program.  VERY important, by the way.
• No family history of breast cancer. Although the majority those diagnosed have no family history.
• Normal weight (took off 20 lbs post-chemo)
• Minimal alcohol intake.  Maybe 1-2 glasses of wine a week.  For the most part, it just doesn’t taste as good any more.

What increases my risk: 

• I have breasts.
• I’m female
• Increasing age – as of next week I’ll be over 60
• A personal history of breast cancer
• Radiation exposure – damned if you do, damned if you don’t
• Beginning your period before age 12 (I was 11)
• Beginning menopause after age 55 (I was 58)
• Postmenopausal hormone therapy: 3 months of bio-identical, but messing with nature nonetheless

What could reduce my risk:

• Keep exercising.
• Move to another planet
• Arimidex and similar aromatase inhibitors – these are out of the question for me; the pain was debilitating.
• Tamoxifen:  I’ll be doing a lab test to determine if tamoxifen will be effective for me.

Here’s the thing when they say these drugs “reduce your risk by [60%, 70%, etc.].  That is the percent of the percent of your risk.  So if you have a 2% risk of getting breast cancer, taking a drug that reduces that risk = 60% x 2% = your risk is now 1.2%.

On the other hand, there is a significant increase in the percentage of women taking Tamoxifen that develop uterine cancer. In this 2008 study, it increased the risk 3:1 compared to women not taking Tamoxifen.  Is that a risk I want to take?

And let us not forget – no test is perfect; there are always exceptions. Science and medicine are learning processes based on likely outcomes and we are the long term test subjects. For the first 3 years after I found the lump, no one thought it was even enough concern for a biopsy, based on the mammograms, ultrasounds and thermogram.  Much has changed since then, but my first pathology test diagnosed the wrong type of cancer.  This is not unusual.  Prone to Error: Earliest Steps to Find Cancer

(Thanks to Join Our Loop for that link – stop by & visit this dedicated group.)

The bottom line we agreed upon is that I am not the best candidate for a prophylactic mastectomy AND there are no guarantees. 

My insurance does not cover Dr. Hackert, but it does cover the hospital etc., so back to the drawing board and financial planning department.



What is your experience with Arimidex and/or Tamoxifen? Your thoughts on using these?
Have you been through mastectomy, reconstruction or reduction?  What is your opinion?

Graduation Day & Flash-Free Nights

Yesterday was my 2nd 3-month follow up with the oncologist since I completed the herceptin in September. We were holding our breath on this one, since the cancer markers had risen as of my last visit. Good oncology news with the lab tests: all the blood tests are great, the numbers for the cancer markers dropped back to normal levels, and despite the chemo, radiation and bout with Arimidex, the dexascan shows my bone density has decreased only slightly from pre-treatment levels. I’m nowhere near osteoporosis. If I can get up off my Twitter-butt long enough to exercise on a regular basis, these old bones will be fine. I’ve graduated to the six-month follow up plan!

The best news is that she agreed the Arimidex was not for me, and maybe none of those meds will be. I’ve been off it a month, and although several symptoms are gone, and the joint pain is significantly reduced, it is still there. Now I have this weird stabbing pain in my left hand that only happens after 9 p.m. and lingers until morning.

I had been trying to get through a 15 minute routine on the rebounder, and halfway through it was all I could do to follow with small movements. The pain in my right hand and elbow was severe enough to preclude my lifting a 5 pound weight. By the second week off that wretched drug, I not only got through the full routine without even getting winded, but I did it in conjunction with arm exercises using both weights. I’ve directed my excitement about the increase in my energy and stamina to override how pissed off I am about the insidious side effects. I was down so long with that stuff that I didn’t know what “normal” was supposed to be.

Monday I’ll see the radiologist for that 6-month follow up, a week before my 1 year rad-iversary on St. Patty’s Day. Even though the process was much easier on me than it has been on so many women, cancer treatment is a brutal insult that is imbedded in the memory of my body and soul. Time seems to have passed so quickly, but it feels like I’m still climbing out of an altered state, surprised every time I reach another step towards health that I didn’t anticipate.

There are yet more special events left in the wake of Arimidex: hot flashes and the dreaded night sweats, which had been long gone and didn’t even arise during chemo. During a relentless attack the other night, I remembered someone telling me of a remedy of apple cider vinegar and honey (or maple syrup). I thought the recipe was for 2 tablespoons of each in water, so that’s what I did. Not only did the hot flashes stop within moments, but I conked out for the rest of the night.

I looked up the recipe the next day in a little booklet my mom had sent me about 20 years ago (and I filed away thinking it was crazy). It actually suggested 2 TEASPOONS of vinegar. No wonder I felt slightly queasy. But it worked – really, really fast.

Usually I have several flashes throughout the day, so I dress in layers, starting with sleeveless. By 3 pm the following day I realized I had been working all day in a sweater AND jacket, and had never felt uncomfortable. I’ve continued the remedy several times a day for the past 3 days; I still have them, but they are significantly less frequent and less intense. I passed the info to a friend who is in a constant state of spontaneous combustion, and it’s working for her, too. Bear in mind that both my friend & I are following a pretty clean diet – little, if any, processed foods, lots of fruit & veggies, etc.

The purist recipe is here: http://bragg.com/healthinfo/acvdaily.html
This is an excerpt:
“When you wake up in the morning just make a delicious cocktail using 2 teaspoons of raw, organic apple cider vinegar, and if you need a sweetener, use organic honey, 100% maple syrup, or molasses to taste. If you are diabetic, use the sweet substitute stevia. I recommend you use only distilled water. This "Bragg Healthy Cocktail" is designed to flush out wastes that are clogging the organs of elimination, the bowels, lungs, skin, and the kidneys. Take it at least twice a day, and you will start to see changes like increased energy, soft skin, and decreased muscle and joint aches from exercise. Make sure you use raw, organic vinegar, never dead, distilled vinegar because the natural enzymes, minerals, and nutrients are destroyed in the distilling process. Any vinegar that is clear and has no "mother" (the strand-like substance in the bottom of the bottle) has no nutritional value. Natural raw vinegar should be pungent, with a rich, brownish color and a visible "mother." Drinking apple cider vinegar daily, and eating a largely fresh, organic, vegetarian diet, along with following a simple fitness program, will change your life so dramatically you will never go back to your old ways!”

Mr. Bragg is a character, and claims it will cure everything, and the book made lots of unsubstantiated claims. It does not mention hot flashes, so I don’t know where I heard that tidbit, but I will say it helped lower the heat!

I do like their products, which you can get at most health food stores. I have been using the Bragg’s Aminos for years and it is delicious; I use it just like any other soy sauce as a seasoning, and always spray it on my salads.

If you have hot flashes and try this remedy, please let me know – did it work for you?
In the meantime: What do YOU do for hot flashes?

Life After Cancer – Or So You Would Think

This is insane – how did I lose a year? I started writing this post in June 2009, my cancerversary – a year from the first diagnoses, first surgeries and first step into a new dimension of sound… oops, wrong dimension. Well, maybe not. Let’s see…

You unlock this door with the key of imagination. Beyond it is another dimension. A dimension of sound, a dimension of sight, a dimension of mind. You’re moving into a land of both shadow and substance, of things and ideas. You just crossed over - into the Twilight Zone.

Yup, that sounds about right. For the next nine months I was the star in my own TZ, going through life as if everything were normal - until the final shocking twist.

A year ago I was tired & hairless, in the aftermath of a New Year’s party I still can’t believe we hosted, surrounded by friends that took over my kitchen with a spontaneous cleanup patrol. This New Year was our 10th anniversary, my first year post chemo. We enjoyed a quiet early dinner, just the two of us, toasting with gratitude to our health and happiness (and my new hair). We survived the worst of the cancer treatment. We survived Dave’s layoff in November (he starts an awesome new job on 2/1). Each terrifying leap into yet another void opened yet another dimension.

I still don’t understand this cancer epidemic. I had none of the classic risk factors, genetic tests were all negative. I wonder why me, regarding both why I got it and why I survived. There are those younger and healthier that don’t survive. There are those that break all the “healthy lifestyle” rules and never get cancer. It’s like a ruthless tornado that wipes out an entire town but leaves one house untouched.

When I look at my life’s TO DO list, I feel a prevailing guilt about procrastination. Last week I was chastising myself for not having accomplished certain milestones over the past year when a friend stopped me in my tracks. “Whoa, remember that cancer-chemo-radiation thing you had to take care of for a while?” Oh. Yeah. THAT interruption.

For a brief recap, during the day all my focus and energy was directed toward taking care of patients, running the office and attending endless medical appointments in between.

Radiation was not as bad as I expected it would be, and going 5 days a week for 6 (or 7?) weeks got me out of the office for a break during the day. Between the Hyperbaric Oxygen therapy, the Chinese Burn Ointment and clay treatments from TTE Skin Care, I had minimal swelling, burning or discomfort. I tried a specialized formula from a compounding pharmacy, but it was absurdly expensive, and didn’t help as much. Some of the other women who opted not to use remedies said their skin was so damaged it hurt to wear clothes. Other women had no side effects at all. It’s all such a gamble.

After work, my reserve of mental energy was limited to putting together a fairly healthy dinner and operating the remote control, not necessarily at the same time or at a reasonable pace. Over the six months of treatment, I must have watched every episode of Law and Order made since 2001. Some I watched 2 or 3 times, because I couldn’t remember the endings. The upside to short term memory loss was being very easily entertained. You could tell me the same story at least 4 times before I would rudely interrupt with the punch line.

After completing radiation (St. Patrick’s Day), the fog that encircled my brain slowly dissipated. At first it was like being on the edge of a dream, that mysteriously familiar state just before waking where the actual sounds and voices around you are woven into the story in your unconscious, and you are unsure whether all or any of it is a dream or reality. When you begin to waken, the dream thoughts slip away in wisps as your world comes into focus. Every now and then thought pops back in that seemed so important at the time, even prophetic, but you can’t remember why. If you are fortunate enough to keep it in your mental files, its meaning can unfold during a flash in a recurring dream or a moment of déjà vu.

I had fleeting glimpses of a turban/headwrap that would be easy to wear, but I didn’t know how to construct it. These images nipped at my thoughts, interrupted my sleep. If that sounds commercial and shallow, you must understand that to say losing your hair to chemo adds insult to injury is a gross understatement. No, I am not my hair and all that, but it’s part of our identity, and in the middle of wondering if I’m going to live or die and what’s going to happen to my family, why me, will it hurt, will I lose body parts… women don’t need the stress of being afraid to look in the mirror. Just because chemo knocks the crap out of us, strips us bald and leaves us pudgy, tired and bloated, it doesn’t mean we can’t look stunning in our warrior stance against cancer. Note to self - sword sheaths to coordinate with the head wraps…

Some time in April I had a Rip Van Winkle moment – I woke up, stepped out of that zone, and was shocked by all the things that had been left undone since June 2008. So much to do!!!

Is it here – is it gone – am I free – are we safe? There was work to be done, lives to save, turbans to create. There were still the blood cells to watch, “cancer count” to monitor, the skin to heal from radiation. Not to forget the follow up MRI, quarterly heart scans and a mammogram as soon as I could stand it. And plugging into a bag of Herceptin every three weeks, a friendly reminder not to get too comfortable; cancer could still be lurking in the darkness. I met one lady that nearly died of heart failure because of her reaction to Herceptin after finishing a different chemo that caused the reaction. She is doing great now, another woman that inspires me whenever I start to grumble about the comparatively minor and annoying changes my body still goes through. I have NOTHING to complain about.

The more my mind cleared, the more I was haunted by the need to design something that would look like my head wraps, yet still be easy to do. Women with baseball caps were waiting out there for something to help them look stronger and happier. I tried every hat and turban design by all the pattern companies, but nothing came close to what I wanted. So I did what I know how to do… I started wrapping pieces of fabric on my head. Clipping, pinning, stitching, tossing it out and going back to the wrapping board, as it were. Then there were mechanical issues.

My regular sewing machine needed a special attachment for the hem, which had to be special ordered – a 2 week delay. The serger machine (the thing that trims and neatly finishes seams) did not cooperate, and it was critical to the construction of a finished piece. It would work reasonably well until a Sunday, when the repair shops were closed. After several episodes at the sewing machine hospital, it survived long enough to finish an adequate prototype.

There are an infinite number of details in creating a product; the design was the easy part, despite the months of intense work and frustration. At that point, I struggled to see over the horizon, because I had to learn how to promote and produce them – it was clear from the beginning that I am not the seamstress in this process! I became engrossed in a new universe of garment manufacturing and marketing, with its own collection of regulations, new connections, resources, trade shows, media, protection of intellectual property, incorporation, attorneys, accountants, internet visibility and promotion – AUUUGGHHH!!! I just wanted to make nice wraps for the ladies at the clinic!

Other dimensions opened since I emerged from my chemo trance. One is enhancements to my chiropractic practice, and the other is the development of this new headwear mission. So far, I feel I’ve kept a good balance between the two, and I am amazed that I have the energy to get everything done. I work seven days a week from pre-dawn to the end of day, fueled by the excitement of both creativity and contribution.

The pinkribbon goddesses must have been smiling upon this project. After the site launched June 1, it had almost 2000 hits in the first 6 weeks. We were on Good Day Sacramento on June 29, and my first fashion show, to benefit Relay for Life, was on August 30. Each step is steeped in details and deadlines. Staying organized is not my favorite pastime, but now I am forced into it or everything will fall apart. Fortunately, I have not been alone. Dave & I had met an accomplished entrepreneur through a business network several years ago, and occasionally kept in touch through our various projects. When he offered to let me pick his brain for this venture, I jumped at the chance. He has been an invaluable resource and trusted friend, our Guardian Angel who propelled us far beyond our own knowledge base.

I never know if the cancer has been banished by my swift and aggressive actions to suppress it, or if it is hiding in the shadows, smirking, licking its chops, waiting for an opportunity to strike again. I am ready to deal a preemptive strike at any time to keep that son of a bitch in its place – out of my life. If I’ve learned anything it’s that life is too short to procrastinate, and it is rich with people who will carry you through. And it’s OK to ask for assistance along the way, graciously accept the gifts that are offered, and keep on climbing – it only makes us stronger to help both ourselves and each other.

We complain about “chemo brain” and how it puts you in a fog. In retrospect (and evidenced by neglecting the blog since I emerged), it seemed more of a dream state of odd creativity. Not necessarily a nice dream, more like an acid trip without the sitar music. Although it felt endless while I was there, it was a fragment of time that made me keenly aware of my mortality and the metaphors that speak from everything around us.

I became exquisitely appreciative of human connection, even among strangers. We will pull together in crises. We all have the capacity and willingness to become heroes when the moment calls. Although I snapped into a frantic pace of playing catch-up as soon as my energy returned, those lessons are certainly not lost.

I thought the message in my getting cancer was to find a natural cure. Ha. I couldn’t even swallow most supplements during that time. I’m leaving that to the healers who are much smarter than I will ever be. My role in health care evolved with deeper empathy, more resources for those in need, and an ever gentler touch for those in pain, whatever the source.

The unforeseen lesson was to wake up my artistic side, the part I buried under years of the Intellectualizing One, and to introduce them to each other, stir up the synergy to help me get my job done. From psychics to coaches and counselors, I’ve been told over and again to get out of my head and back into my heart. I kept looking to my healthcare practice to fulfill all that. Now I see there are more ways I can help people heal. Time is running short. Even if I live to be 100, my life is more than half over and there is so much to do.