Thursday, August 5, 2010

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?

Sunday, July 25, 2010

Whattaya MEAN... it's not over YET??

Hahahaha... I thought I made a smooth transition into the my-life-after-cancer mode, but apparently the interim between cancer and cancer-free is filled with surprises. I graduated to a six month oncology visit schedule, and a one year MRI/mammo routine.  Lest I get too comfortable... 2 weeks before the scheduled M/M, I was drying my hair when I noticed a lump under my LEFT arm.  

What the hell is THAT?  It was Friday, and the radiology oncologist was out of town for a long weekend.  The nurse suggested I call the oncology surgeon, who gave me an appointment for early Tuesday morning, deducting a day or two of stress over what kind of growth was taking over the other side of my body.

"What the heck is THAT???" ... she mused when I lifted my arm.  I guess that's a more favorable response than, "Uh oh...."  She glommed my armpit with goo and did a thorough ultrasound exam. Although the lymph node was swollen, it definitely didn't look like cancer. But she wanted to make sure the upcoming mammogram and MRI took a closer look.

I'll spare the details of those exams, but had I not been there, I would have never believed it was possible to pull an armpit into a mammogram.  The second ultrasound confirmed the lymph node was normal, but it would be a few days before I learned the results of the mammogram and MRI. During the wait, I was pissed that we are so vulnerable to this beast, a little fearful, and a little confident that no matter what the outcome I could anticipate what treatment would be like.  Denial crept in, I'm sure.  The next day the oncologist's office called to say the report came back negative.  I received a letter from the radiologist to confirm that all was well.

A day later, I received a second letter from the radiologist saying I had evidence of a cyst that should be biopsied.  The oncologist had not yet received that news, and that's when the confusion started.  The next day I received a third letter, congratulating me because my test showed no signs of cancer!  OK.  WTF.

Apparently each separate test generated its own letter.  The mammo & ultrasound were clear, but the MRI found a smoodge in the left breast.  It was not a clear enough image for a surgical biopsy (just put me to SLEEP!!), so Dr. G ordered an MRI-guided needle biopsy.  UGH! I've heard horror stories about these, and the idea of a needle in my boob just freaks me out.  I was dreading it.

It was no big deal, really.  I didn't feel a thing; they must have used a pediatric needle for numbing.  The only weird part was that it sounded like she was using a dental drill to take the tissue samples.  The area was black & blue & lumpy for a couple of weeks, and a little tender for only a few days.  The results were in the next day - it was benign.  Ha. I should have known better than to get too comfortable.

In celebration of the clean report, I made an appointment with a plastic surgeon (Dr. S)  to talk about some cosmetic reshaping of the breasts to balance out the aftermath of all these surgeries and radiation, which has left me a bit lopsided.  I'm starting to limp from the extra weight on the left.  I didn't feel the need to go to the oncology plastic surgeon, and a local plastic surgeon with a long history of reconstructive procedures was recommended by friends.

The day after my 2-year cancer-versary, I was sitting in his office for a consult.  I didn't expect his response, which started this roller coaster ride which I hope is starting to settle. 
After telling him my history & recent events, he said he wouldn't touch my case cosmetically, and I had anyone ever talked to me about considering a double mastectomy? (He wasn't that blunt about it; that's the short version of an inspiring conversation. I have a high level of confidence in him.) He listed a few things in my history that really concerned him; they had been things that concerned me, but I was told it was OK.  I think his validation of these is what gives me a sense of relief that I'm not completely paranoid.
He referred me to another surgeon for a second opinion about a mastectomy, so I made an appt. for their soonest, 7/6.  What did I feel? hmmmm... a little fear that it will hurt, it will look gross for a while.  An odd sense of relief that someone is leaving no stone unturned.   I talked to Dave during his lunch break that day, and we are both OK with doing whatever needs to be done after the consult. But it sure looks weird to see that "double mastectomy" phrase in one of my posts.  
Back in the routine... calling all the docs to transfer records, making decisions, getting everything poked and prodded.  He also suggested I get that colonoscopy I've never had, and even an ultrasound on my ovaries just in case... it's good advice.  What concerns me is those who still think they ARE safe, invincible, and don't get anything checked till it's too late.  I guess it's time to resurrect this blog of the Reluctant Sisterhood, those of us intimately connected by this indiscriminate invader, doing our best to carry each other through to safer grounds.
A really eerie thing happened as soon as I turned on the computer that day - I received a long note (addressed to many of her friends) from a lady I met through, a network for cancer ... (what, Cancer-ese, cancer people? what???).  She had widespread breast cancer, double reconstruct, lymphedema, and now...
Her note was about how although she's finally had a clean bill of health, does the fear ever go away?  It was so timely. I wrote back and gave her the brief recap of what just happened.  A minute later she called me, and said every cell of her being was vibrating with the message that I need to do this.   Like a guardian angel swooping in unexpectedly to give me some perspective, we talked for about 1/2 hour about her experience, that of other friends that have gone through it. 
The next day another angel swooped in - she called for a nutrition consult because we are both post-BC, and we just clicked.  She invited me to a BC support group near my office, and these ladies have been an incredible resource of information on surgical options and the best folks for the job.  Almost everyone there has been to the same team as I have, with high praises.

Dave & I went to see the surgeon Dr. S recommended for a consult on 7/6, and long story short, he gave what we felt was an objective overview of the pros and cons of mastectomy and reconstruction vs reduction.  One subtle theme that I picked up is that there are PS (plastic surgeons) that prefer a cosmetic-based practice (and consequently a cash practice) and others that prefer an oncology/reconstruction based practice (despite the burden of insurance companies).  This is not good or bad; every medical practice, including chiros, face decisions about cash vs. insurance.
Which leads me to wonder... Did the PS that referred me there have hesitation about taking my case because he is moving towards a cosmetic-based practice, and does not stay connected with the oncology network he worked with in the past?  Would Dr. Hackert, who primarily does oncology-based surgery, have a different point of view?  She is the PS we went to see initially (2008) when I didn't know where any of this was going.  
Fortunately I'm not in a rush to do anything, so I have time to interview.  I met with Dr. Hackert this past week, and went over the details of her doing a reduction.  In the event that a mastectomy is the final decision, there is a process called DIEP that uses tummy fat instead of implants to create a new breast.  Most women who are familiar with this process have referred me to a doctor in SF, and that is the same doctor that Dr. Hackert recommends.

According to Dr. Hackert, the person who will have the most informed view on my risk of recurrence is the oncologist (chemo doc).  So that is my next stop.  There is so much to weigh out in making this decision. I won't beat this dead horse, but... I didn't have any risk factors to begin with.  
Whatever I need to do, I'm not freaking out about anything.  2 years ago I probably would have, but I've seen & done enough to know about successful surgeries (and you know who you are!) & am thriving wonderfully, so it's just another blip on the radar.  At the time I had a feeling I was a candidate for prophylactic mastectomy, now I see where I can glean more information.  I am so fortunate that the right people appear when I need them. Since there's no immediate emergency I will wait till at least November-ish before doing anything.  

What do YOU think about all this??? What wisdom can you share from your experience?

Tuesday, June 1, 2010

Sunset Fiesta Turban, Head Scarf or Chemo Hat

These colors are delicious - vibrant orange and soft yellow sweep together like a summer sunset in a light, sheer chiffon.  Embroidered with jewel tones of deep blue and teal, this will look stunning with summer outfits - from crisp whites to jeans or a bathing suit.  You can shop and see and other styling ideas at Titillating Turbans.

Last year at the LA Textile Show we took some time to browse through the fabric district outside.  Seems 13 floors of fabric just wasn't enough for me.  I saw this fabric from across the street and bought the whole bolt.  Sadly, it is one-of-a-kind and I can't get any more, so if you like it grab it now!

It ties beautifully into a bow, you can wrap the ends around the band to create a turban look - for Sex and the City fans - or wear the band alone as a light scarf, headband or sash belt.

In between working like a crazed elf, I'm wandering more deeply into the wonderful world of textiles.  This month I'll be taking classes to update my skills in silk painting and then learning to texturize it with other fibers.  A long, labor intensive process, but the possibilities are endless.  I am so curious to see how it eventually ends up on my head.

I hope you are enjoying this fabulous weather! Our garden has loved the alternating rain & warm weather, and we have more blooms and figs than ever.

What are you doing this season to dust off the cobwebs (whether your house or your brain)?

Wednesday, May 12, 2010

Turban in Hibiscus Print, Summer Head Scarf Sets

Whether you need a chemo hat for hair loss, an easy to tie head scarf, a turban for after exercise or yoga wear, the collection at Titillating Turbans is always expanding. 

You'll feel like you are strolling a Hawaiian beach in this festive pattern of hibiscus flowers on a background of turquoise and purple.  

Visit here to see over 50 colors and fabrics for every occasion. Whether for yourself or a gift, this accessory will be enjoyed for many years to come. 

Every 2-piece set of hat and scarf ties into more than a dozen different styles.  

Saturday, May 8, 2010

Arimidex - the Gift That Keeps on Giving

It's been 3 months since stopped taking Arimidex, and there are a few symptoms that linger. I haven't quite put together what aggravates the pain it left in various joints of my arm/hand, elbow and shoulder, but they come and go at what seems to be a random pattern.

So tell me, if you have stopped taking Arimidex -
  • Did you take it for the full 5 years, or have to stop early?
  • If you stopped before 5 years, how long did you take it?
  • Is there anyone out there that had NO side effects with Arimidex?
  • How long since you stopped taking it?
  • Are you still experiencing side effects?
  • Have the side effects become less intense since you stopped? If so, how long did that take?
  • Are you taking a different drug, and if so, what?
  • If you are not taking a different drug, are you using a natural remedy?
  • Did you report your reaction to Arimidex to the FDA?
I'd love to hear from you! Please post your comments below. I monitor them before they go "live" so if you prefer to keep them private, just let me know. Thanks!
12/20/13 Update
How to report side effects to the FDA

Tuesday, April 13, 2010

Chow Down for the Cure?

Monday, April 12:
KFC introduces the breadless sandwich, “Double Down” two slabs of fried chicken and melted cheese, two pieces of bacon. Based on the Original Recipe, diners can gobble down 540 calories, 32 grams of fat and 1,380 milligrams of sodium.

Tuesday, April 13: Alicia @stales posts a Tweet and starts a discussion on WEGOhealth about the oxymoronic KFC/Komen partnership for “Buckets for the Cure,” and it becomes apparent that we are not the only ones fired up about this.

This promotion is a poor choice of partnering for a cause, and I agree with everything in Alicia’s excellent post. Among other things, Alicia suggests KFC make donations based on healthier meal choices purchased, and distribution of educational material during the campaign.

Click on the Komen "Breast Cancer information" link on the Buckets site, and they meekly suggest, "Maintain a healthy weight." But on the Komen site, they have a lot more to say about "Body Weight and Weight Gain:"

In two large studies, women were at increased risk of postmenopausal breast cancer if they had gained 20 or more pounds after age 18.

Losing weight after menopause may help lower risk of breast cancer. One large study found that women who lost four to 11 pounds after menopause had more than a 20 percent lower risk of breast cancer compared to women whose weight did not change.

As a health educator, this kind of mixed message for the sake of profit makes me want to scream. An extra 100 calories a day over what you need adds an extra 10 pounds a year.

Those who know better about nutrition may get angry or laugh at the absurdity of this KFC/Komen partnership, but they won't buy a bucket of fried chicken so Komen gets 50 cents.

Those that have the greatest need to learn about healthier eating can interpret this as: If Komen, "the global leader of the breast cancer movement" is involved, then fried chicken must be OK. And buying a bucket supports breast cancer research. Chow down, kids!

What could have been an invaluable opportunity for community outreach and education risks the anger of Komen supporters, and all those that fight an uphill battle against the "bigger is better" food culture.

If the Pink Buckets were filled with grilled chicken, or even Original Recipe - WITHOUT skin and breading - it would give folks a first hand experience and important lesson: that you don’t have to completely give up your favorite foods to improve your health.

Here are the facts on KFC. It would have been so easy to suggest and reward the healthier options:

Orig. Recipe Ch. Breast
without skin or breading
- Cal: 150 Fat g: 2.5 Chol: 85 Sodium: 430

Grilled Ch. Breast -
Cal: 190 Fat g: 6 Chol: 90 Sodium: 550

Orig. Recipe Ch. Breast -
Cal: 320 Fat g: 15 Chol: 110 Sodium: 710

Spicy Crispy Ch. Breast
- Cal: 420 Fat g: 25 Chol: 110 Sodium: 1250

Extra Crispy Ch. Breast
- Cal: 510 Fat g: 33 Chol: 110 Sodium: 1010

What do YOU think?

Monday, March 22, 2010

Fun Day on Psyche’s Playground

It’s not that I don’t have more than enough artsy hobbies to keep my house in a constant state of disarray, but they are all so isolating. For the past 2 weeks, I’ve taken the time to join a couple of small groups on a Saturday to do SoulCollage. One of my previous students-turned-facilitator led the one on 3/13, and I led the one last Saturday. It always amazes me to see how random images can reach the deepest levels of our Psyche and initiate healing.

I encourage you to read more about it on the SoulCollage site, but the basic process is to create a collage on a 5x8 card, and identify it as part of your life in a phrase that begins with “I am the One who…” and give then give it a name. I have more cards displayed in previous posts, and I wanted to share these recent ones:

5th Chakra

I am the one who knows
that although my voice is small,
I can trust that Spirit will reflect its strength
to be carried by something larger than myself.

Self Esteem

I am the One who knows
that even when I have a bad hair day,
my higher consciousness
will always exude my inner glamour.

And what about you? Have you worked with collage and/or art therapy? What refreshes YOUR spirit?
Love, Laurie

Saturday, March 13, 2010

Why Turbans?

When I was diagnosed with early stage breast cancer in June, 2008, I focused on the high chances of recovery. I imagined myself a warrior in a dark adventure, full of unknown challenges that would force me to find solutions to help all of us that face this journey. As both a patient and a doctor, maybe I would even discover a natural cure.

As the days of chemotherapy and radiation closed in, I didn't feel so adventurous. Above all, I became obsessed with how to deal with losing my hair. The doctors encouraged me to maintain my lifestyle as much as possible during treatment, which meant being in public almost every day. I wanted to be a positive role model to my own patients, no matter what my condition.

At least initially, a cancer diagnosis rips away our sense of control over anything. Unlike gradual appearance changes, like weight or normal aging, chemo hair loss can happen over just a few days, and we can't do anything to stop it. Living in a body that has turned against you, chemo leaves you tired, cranky and hairless, and you don't even recognize the person in the mirror.

Some days it's difficult to just get up, yet there are daily tasks, medical appointments, a job and a family. With barely has the energy to put on lipstick, you would think appearance is not important, but the comfort of the familiar, and that need to look good and be accepted, never goes away. Besides feeling awkward, I didn't want how my head looked to scream "I have cancer." I admit, I'm a teeny bit of a control freak, but I wanted to inspire hope, not pity.

Going through treatment in the cooler months, few women I met went bare-headed. Other than wigs, most wore skimpy kerchiefs and caps that were more of an emergency measure than a conscious style decision. As we chatted in the waiting room, many complained that they were self-conscious about their hair loss and dorky hat, often looking worse than they felt, and frustrated by this constant reminder of their illness.

Once I lost my hair, my scalp was so sensitive from other chemo side effects that wigs were unbearable. I experimented with wrapping scarves of all sizes until I came up with a turban effect that was actually more flattering than my hair had been. And I could wear colors to match an outfit, I ­ couldn't do that with my hair! Every time I went to the treatment centers, the nurses ran over to see what new wrap I was wearing. Best of all, the patients would always brighten up and ask me where they could find one already wrapped.

Seeing the turbans made everyone well, titillated. And the idea of Titillating Turbans was born.

Because wraps can be challenging, I wanted to create something that would be easy for anyone to just plop on their head, and style according to their own personality. There were no patterns similar to my turban, so I started snipping and stitching until I developed a workable pattern and found the most comfortable fabrics. I made a prototype and by June, 2009, a year after my initial diagnosis, I had all the business aspects complete, and a new line of head wear that makes women perk up and smile from the moment they see the variety of gorgeous colors and soft fabrics.

Throughout my life, my mantra has been, "Everything happens for a reason." Then I got cancer, and entered a family of thousands of cancer patients of all ages. And I can find no reason for all this suffering.

Now I believe stuff happens for no reason. But what we do with that "stuff" defines who we are. What I do see is that we are incredibly loving beings, with instincts not only to preserve our own survival, but to ease the suffering of others. Whether you knit a cap, send a card, call, tweet or discover a cure, the roles are equally important. Our strengths arise from our ability to sense the needs of others and our resiliency in the face of adversity to find solutions that will ease their pain.

I hope Titillating Turbans is an encouraging link in the chain of recovery. They were created to help women remember they are so much more than their hair; each person has a unique style and beauty that comes from within. No matter what happens to our bodies, we are creative creatures and will find a way to decorate and celebrate who we are, connect with others and share the healing wisdom that awakens as we embrace each moment of this precious life.

This article originally posted on Join Our Loop. Please visit and support this inspirational gathering place for collaborative insights and information on breast cancer - before, during and after diagnosis and treatment.

Saturday, March 6, 2010

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:
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?

Friday, February 5, 2010

What Was I Saying?

I don't know whether to blame menopause, medication or just doing too many things at once, but this is a typical conversation with my husband. He had just finished installing a shelf in the closet when I came in and asked:
Are you hungry?
Dave: Did you see what I did in the closet?
Me: Wow! That looks great!
Dave: Thanks! Are you hungry?
Me: Why, are you?
Dave: You just asked ME!
Me: I did?

On that note, I'm glad we can all laugh, even if some of us don't remember what we are laughing at...(have a nice weekend!)

Thursday, January 14, 2010

Adventures with Arimidex

If you are new to this blog, or one of the angels that has been following on the carepages, welcome. Be assured that none of my rantings are complaints; I’m delighted to be alive, regardless of what it took to get me here. Nor is anything here to be construed as medical advice. I am a breast cancer survivor that happens to be a chiropractor and perpetual student, which gives me access to resources that may not be in the forefront of the news. My purpose in documenting this journey is to encourage your own research and remind you that you are not alone when, for example, your fingernails suddenly shred to the quick.

I love my oncologist. She timed each segment of my treatment to allow adequate recovery in between, and always gives me fair warning about the next step. Then she guides me into doing it on schedule while still letting me feel I have some control in the matter. That’s a warm fuzzy for a control freak, even if is an illusion.

My chemo cocktail was Taxotere/Carboplatin/Herceptin. I completed the first two in December ’08, but as a gift that keeps on giving, the after effects of Taxotere still continue to be achy feet and joints, especially first thing in the morning. Those were quickly relieved by just moving around, and the more I exercised, the better I felt. It was just weird to feel like my joints had suddenly aged 30 years.

Months ahead of her writing the prescription for Arimidex, she interjected the topic into each of our conversations, adding a little more detail each visit. Before my BC diagnosis, I rarely took prescription meds, and used over the counter (OTC) stuff so infrequently that it expired between uses. She knows and respects that taking any meds is a big deal for me. When I finished my year of Herceptin in September 2009, it was “time” for Arimidex. She patiently watched me dance around it for weeks with excuses to postpone the start date.

Both Tamoxifen and Arimidex are drugs taken for about 5 years after finishing chemo for breast cancer. They block estrogen receptors, a good thing if the tumor is “ER+” (estrogen receptor positive), which mine was. An oversimplified explanation of the differences between the two is that Arimidex is typically for post-menopausal women with early stage breast cancer, and Tamoxifen is for premenopausal women (thereby inducing premature menopause). For a more detailed explanation, there is a link to an expert at the end of this post.

Back to the matter at hand.

The list of “common” side effects of Armidex (they occur in 10-20% of patients) made chemo look like a picnic. Once I started taking the drug, I found that they can happen quickly. On the upside it significantly decreases the chances of breast cancer. Hopefully, that would not be due to a side effect killing me sooner. After a week of pretending I forgot to take it, by the beginning of October I ran out of excuses.

Because I was concerned about nausea or anything that would prevent me from working, I waited until a Friday night to take the first pill. I collapsed on the couch, waiting for my eyeballs to bleed and my feet explode. Nothing happened.
Within minutes there was an unfamiliar pressure in my head, similar to the onset of a headache, but I was fine by morning. That symptom still occurs frequently, but not enough to concern me.

Much to my surprise, over the next 2 days my skin looked surprisingly clear (the last herceptin infusion resulted in massive outbreaks). Or maybe the Arimidex severely affected my eyesight? My thoughts were more focused, my energy increased, no aches or pains. I even went for a walk/run and actually looked forward to it... for someone who hates to exercise, I felt this was a bonus.

About a week later, my fingernails started shredding like they did during chemo. I woke one morning with the feeling of an ice pick in my low back. I attributed it to maybe sitting too long or wearing the wrong shoes the day before. I did a few stretches, hobbled around and got on with the day. As it became worse over the following week, I made several visits to my chiropractor. I also have a multitude of effective modalities in my own office, and tried them all. I used cold laser treatments, my usual natural remedies, laser acupoint therapy. I finally succumbed to a few doses of Advil. Not only did nothing relieve it, but it continued to get worse and the pain kept me awake every night. By the end of the second week I wondered if the cancer had metastasized to my spine.

I called the oncologist’s office; they assured me that pain was a common side effect. It would diminish over time and if needed, they would prescribe… forget it. Every prescription pain killer gives me hallucinations, and not the fun kind. Even Advil or Aleve leaves me groggy. I stopped taking the Arimidex and within a few days the pain diminished.

Faced with the dilemma of jumping back into hell, I took dosing matters into my own hands and bought a pill-splitter at CVS. It took a couple of weeks and a few more chiropractic adjustments before the pain went away. At that point I went back on Arimidex at ½ dose for the first week, then full dose, and to this date, the pain has not returned.

After about a week, my thoughts became… negative. Not depressed or teary, but almost. Internal chatter about being a loser came out of nowhere and filtered my outlook. I started snapping at Dave, which is WAY out of character. We have such a blissful relationship that it tends to annoy a lot of people. Once I realized this sudden change was just a side effect, I was able to redirect my thoughts and improve my attitude. But its onset was so insidious that I can understand how it could easily lead to depression.

Oh yes, hot flashes. Long gone, they returned with a vengeance. Not the constant drenching kind, but enough to be aggravating during the day and keep me awake at night. Another side effect of Arimidex is insomnia, but the hot flashes are so prominent at night that I can’t distinguish if I would be able to sleep otherwise. I can work around pain, but I can not tolerate sleep deprivation. It leaves me foggy and disoriented, affecting my decision making and communication abilities, and overall unraveling my life.

During chemo, I never used the collection of anti-anxiety meds that were prescribed in anticipation of their need. But I remembered that one med had a dual use of anti-nausea and insomnia relief. Reluctantly, after trying herbal and supplement formulas that work in normal circumstances, I found I need the 1mg of Lorazepam to get a good night’s sleep without the hot flashes waking me. It’s not so bad; if I do have to get up during the night, I easily fall back to sleep, and never feel groggy the next day.

The challenge with natural remedies is that they can face an uphill battle against the unnatural pharmaceuticals, but that is another topic. I still don’t like having to take anything, so acupuncture is on the list as soon as my budget allows. I’ll keep you posted.

Two weeks into the second round of taking the full 1 mg dose of Arimidex, a migraine started mid-afternoon. My only history of migraines is on the rare occasions when I didn’t eat on time. Since I learned to balance my blood sugar, it happens only a few times a year, and goes away with a nap. This migraine was relentless for the next 30 hours. That night I did not take the Arimidex, and it went away within a couple of hours.

A few days later, I noticed a twinge in my right shoulder when I reached back into the console for the garage door opener. It was not relieved by chiropractic or any of the previously mention remedies, modalities, or non-prescription pain relievers. As the pain progressed, simple reaching and lifting became difficult. I stopped taking it about a week ago, and within 24 hours the pain was down nearly 50%. It’s almost gone now; I only noticed it during a yoga stretch yesterday. To get rid of the last bit of inflammation I’ll start with the natural stuff, and if needed, an OTC once or twice. As soon as I can do those movements without pain, I’ll be back on a ½ dose and work up to the full dose again.

I’m learning to pick my battles to manage symptoms. Over the past 18 months, many angels in human and other forms have inspired me to find solutions along the way. Some worked, some did not. I took a MacGyver-like approach to many of the surprises that arose, and came out the other side with a big sigh of relief. As much as I used to avoid exercise, now it is a necessity or my joints will lock up. I take a variety of supplements (including MCHC calcium and high doses of vitamin D) monitor my vitamin D levels with my other quarterly blood tests, and I’m due for another dexa scan to make sure the Arimidex is not disintegrating my bones.

Below is a list of Arimidex side effects. I do not suggest you do what I do. Every cancer is different, every person responds differently to any given treatment or illness. But knowledge is power. Being aware of the possible symptoms can give you more control by knowing what to monitor, what to ask your doctor, what choices to explore. If you do have side effects, please report them to your doctor as well as the FDA at FDA MedWatch.

If we don’t speak up, they don’t know. I am not anti-drug. I am anti-drugs-that-do-more-harm-than-good. A couple of paragraphs of resources follow; please share your story by clicking on “Comments.” Be well.

Common side effects of Arimidex include hot flashes, weakness, joint pain, pharyngitis (sore throat), hypertension, depression, nausea, vomiting, rashes, back pain, insomnia, headaches, coughing, shortness of breath and swelling of the lymph nodes or extremities…. asthenia (lack of energy & strength), arthritis, pain, fractures, back pain, pain, headache, bone pain, increased cough, dyspnea (shortness of breath), and lymphedema… onset of osteoporosis… increased cholesterol levels.
Other risks include severe allergic reactions, heart attack, stroke and liver dysfunction.
Serious adverse reactions with ARIMIDEX occurring in less than 1 in 10,000 patients, are: 1) skin reactions such as lesions, ulcers, or blisters; 2) allergic reactions with swelling of the face, lips, tongue, and/or throat. This may cause difficulty in swallowing and/or breathing; and 3) changes in blood tests of the liver function, including inflammation of the liver with symptoms that may include a general feeling of not being well, with or without jaundice, liver pain or liver swelling.

My favorite site for more-than-you’d-ever-want-to-know-about-your-meds is, where you can find side effects, drug interactions, details of the studies, comparisons with Tamoxifen and post-marketing info – the stuff they find out AFTER the drug is released upon us.

For a simplified explanation, here is a link to an excellent article: Antihormonal Therapy for Breast Cancer

What have been YOUR adventures with Arimidex?

Friday, January 8, 2010

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.