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.