Keeping On Keeping On

There are things to work through after fighting cancer, things that blind-sided me. Finishing treatment was kind of like having a baby: I’d studied up on the pregnancy and birth process, knew what sort of pain to expect when, so it wasn’t too scary when my experience matched what I’d read. And I had all kinds of support, at the hospital and from my husband and staff at work (I was the director of a county public library system) especially. But when we came home with a baby, I was completely flummoxed: Now What? Overwhelmed by a new sense of personal vulnerability and responsibility, I experienced a flood of unexpected emotions, not all of them positive.

Coming out of a cancer fight fairly intact, I felt triumphant and grateful, but after a few months, I thought I should be getting over it a lot faster than I was getting over it. (And I also thought friends and family agreed, i.e. enough already.) but it’s a grief process, and it takes time. If you’re lucky, you have a companion who will listen to your story told repeatedly until you’ve healed. It’s not something most people are comfortable enduring.

Since I finished my treatments last April, I’ve been hit with sometimes crippling side-effects to three different medications, but I am finally able to walk my three miles again after quitting Arimidex two months ago, although I am still very stiff after any period longer than ten minutes of inactivity. I quit Prevacid, which promptly ended two weeks of depression and inexplicable weeping.

But once I got sucked into the “health care” system, I got tested for everything, so new stuff shows up: high cholesterol (doc wants me on a statin), osteoporsis (doc wants me on Fosamax)….I resist everything. From what I’ve been reading, none are good for breast cancer survivors. So this has become my anti-recurrence lifestyle: I eat a lot of oatmeal, cinnamon, flaxseed, fruits, vegies, and fish. I walk, lift free weights, get a weekly massage. I do my volunteer work, party, travel. I follow my heart. I have fun.

Which reminds me: I’ve been accepted as an artist in residence at an art community in Costa Rica. So if you can’t reach me at the usual addresses or numbers, email me at

Arimidex Side Effects

And here I thought my struggle was over–that the difficult, gambling decisions had been made. Home free, worry free, until my next mammogram six months down the road. But not. (Did I mention that I passed my first check-up and mammogram in June? Now THAT was a relief!)

After my body froze up and I felt like a corpse, every joint and even my muscles aching all day, I decided that I would take my chances, give up the Arimidex (which, I might add, costs $225 a month!), and instead, after my body gets cleared and back normal (if it ever does), start taking Fosomax. It turns out that Arimidex commonly causes joint and muscle pain and also can cause osteoporosis. My bone density test showed that I already have osteoporisis in my spine and ribs, and so I’ve decided to go for the Fosomax cure.

Of course, my doctor would also like me to go on a statin for high cholesterol and one of those anti-GERD drugs so the Fosomax won’t cause acid reflux problems, and so it goes.

I feel like what my friend Tom calls an “organ recital.” I think what I’m irritable about, though, is having to re-deal with all this stuff. It’s all a gamble: Do I want a long miserable life or a short happy life? Or I might luck out and have a long happy life, who knows? The odds are better that I won’t suffer a recurrence than that I will, but they aren’t terrific. Still, the odds of actually dying of breast cancer are pretty low no matter what I choose.

So although I am not as mobile as I was a few months ago, and feel as if my body is aging years instead of months, I can still function independently. I can still live each day and find much to enjoy. As will be evident in my next few entries.

Balance Act

Yesterday morning I was persuaded by the nurse, who measured both my arms and found them to be exactly the same, that I did not have lymphedema. This was followed by a long visit with the doctor who convinced me that my risk of getting lymphedema is something like three or four percent. So not only was I convinced on both counts–that I didn’t have it and that I likely wouldn’t get it–I was also impressed with my thoughtful, cutting-edge (so to speak), and careful treatment. So I agreed to get zapped after all. Today was Day 7 out of 33.

But it was no surprise that I freaked out at the first sign. I’ve been getting double messages on the subject of lymphedema. During my first visit I was handed an article that warned of more ways to get lymphedema than you could shake a stick at, my grandma would have said. Even a hang nail could set me up with a fat arm for life! How could I not panic? I’ve been without my right arm function for as long as a year and it is, for me, as painter, writer, and college English teacher, a special place in hell.

Despite the many ways to get lymphedema, including showering in water too hot or too cold, washing dishes, touching a hot pot, insect bite, small cut or scrape, apparently only a small percentage of breast cancer patients ever get it. If we are so vulnerable, how come more of us aren’t running around with a fat arm?

It’s all a balance act: Being unusually careful of my arm but not worrying too much; allowing myself to grieve my losses while aware that most patients at my treatment center are facing worse; being grateful for caring people while forgiving them things they say or don’t say that irritate me–I can be so self-absorbed that I don’t always find out what’s happening with them. Life is beginning to resemble those computer games my son used to love so much–there are many levels of difficulty.

Recovering from Yesterday’s News

I seem to be recognizing my life-threatening circumstances in stages. It’s hard to know which stage I’m in until I’m booted into the next. People who have been here before me recognize where I am, I think, and they are patient. They know. The professionals, I’m guessing, have seen this again and again. I don’t know if I’m normal or just superresistant. A psychiatrist once told me, about thirty years ago (!), that I was the most resistant patient she’d ever treated. I expect my radio oncologist might sympathize.

Yesterday I checked out all my hugs sources, couldn’t find any available, had a cry day, and now I’m okay. Now that I understand the situation, my resistance is gone. Just call me Ms. Cooperation. Just call me Ms. Courage. I’ll even cancel my trip to Florida.

RESPONSE: This is the first response I’ve had to my Breast Cancer Log. It’s from a woman in her sixties who had found my website so she could order one of my books. I find stories like these really helpful to me, and I’m hoping that my sharing my experiences will help others in the same way. Here is Janet Stillwell’s email to me:

I am a Breast Cancer Survivor. I was diagnosed with Stage 1 Breast Cancer in 1995, had a lumpectomy and radiation. Three years later the same diagnosis on the right breast – again a lumpectomy and radiation. I faithfully had my mammograms and with each one they would find some microcalficications and recommend a biopsy. After a couple of these, when they decided I needed to have my mammograms every six months, I said to my surgeon “there has to be a better way than this.” He said “we could do a simple bilateral mastectomy and be done with this forever.” I said “go for it” and he responded” I hate to tell a woman she needs a bilateral mastectomy” to which I replied, “I’m not earning my living as a topless dancer!” He did the surgery and I have been fine ever since.

Not Out of the Woods

I found out today from my radio oncologist, who spoke with me for almost two hours, that I do indeed have invasive cancer and I have decided that I am going to have to go through radiation after all. I resisted it because lymphedema to my right arm, upon which my whole life and livelihood rests, scares me more than losing a breast. But now I believe that it would be foolish of me not to do it. I was so happy, feeling as if I was let out of prison, and now I feel reincarcerated. Sort of apt, don’t you think? Sort of incarcinoma-ed? I am not without courage but I am a wimp. Getting sucked into the medical machinery like this scares me silly.

My brother, a doctor, helped me read the pathology report. It was dense with scary language but he was a short cut to getting some of the terms. A website that also helped me was A similar website,, suggests how Chinese medicine might enhance traditional Western treastments. I may explore this to support my own healing.

Becoming consious of losses

Isn’t life just like that? When the news was bad, I thought I was finished, that there wasn’t going to be any good news for me again. But I was wrong. And when things are going along great, I feel on a roll, that nothing bad can happen to me. But those things swing, pendulum like, through my life. However, I had never been hit with a life-threatening condition. I lived a healthy life, exercised, ate well, looked great. I felt immune.

A friend of mine would call this “magical thinking.” But really, illusions have their value. They protect me from so much reality that I can’t live fully in the present. Possibly that positive thinking acts as a kind of protection, like vitamins. But now I can’t pretend I can protect myself. I feel a little like the way I felt when I brought my son home after a perfectly normal birth: vulnerable in a new, irreparable way. I’d never be safe the same way again.

Mary logs her recent experience with breast cancer.

I decided to log my experience. I began my log soon after my first lumpectomy–waiting in pre-op had driven me nuts. I couldn’t watch tv or talk to my good friend Judy who was there to hold my hand, and, as it turned out, be my witness to events no one believed until we both swore they happened. So when it turned out I needed a second lumpectomy plus the removal of who knew how many underarm nodes, I bought something to write in. It turned out that writing kept me calm. I just went on and on describing what was happening, what I was hearing, feeling, fearing, and otherwise dealing with. It was a lifesaver for me.

So find here my story. It may take me some time to write it all down, but I was so hungry to find answers to my many questions, and the experience was for me so full of surprises and unexpected challenges, that I thought I might share it here. If you know someone who might find it interesting or beneficial, please clue them in.