ROUNDABOUT CANCER

CheersIt’s been almost 2 years to the day that I last wrote a substantive blog post, but it doesn’t actually feel that long. So much has happened in the intervening time that it seems two years can’t have held it all. On May 9, 2011, I wrote about my new business, Life Stories. (The symmetry of those dates are nice, but truth be told, I haven’t written a long rambling post since late 2010.)

What I have not posted here is my experience with stage 3 breast cancer –diagnosis, treatment, and recovery. I wrote about it while it was happening but only to a certain circle of friends, a number that I could imagine, people who struck me as the ones to have near through my words. There were many more who were supportive, and I’m sure there were people I thought were on the list but weren’t, but, hey, I had cancer. You can only do what you can do when that card turns up in your hand. It’s about focusing inward to the deepest part of oneself in order to tap into the body, mind, and spirit’s core healing properties.

Looking out the Cancer Treatment Center. I saw the seasons go by outside this wind.

Looking out the Cancer Treatment Center. I saw the seasons go by outside this window.

The short of it was that I noticed a discoloring of my breast, thought it was weird, and went in for my annual check-up. That led to a concerned doctor, mammogram, ultra-sound, concerned surgeon, a couple of biopsies, a concerned oncologist, and the start of chemo, all in a matter of 10 days. My diagnosis came on Tuesday, September 13, 2011, and I started chemo on Friday, September 16. What followed was a course of 4 chemo treatments total, a double mastectomy, 4 more chemo with an antibody in the mix, diagnosis of “no evidence of disease”(NED), breast reconstruction in 4 acts, and the completion of the antibody in December 2012. This post today picks up at about a year out from NED and with one year down of the four I’ll be on the aromatase inhibitor Arimidex.

I have laughed, cursed, relaxed, fought, listened, loved and been loved, nursed, guided, and carried into healing.  I am fortunate and grateful beyond measure.

Below is an excerpt of my writing on my experience. A couple of disclaimers/personal beliefs, bitching and moaning is good for the soul. So is humor and honesty. Also, a medical professional may not come to the same conclusion as I have about my meds and such. So I’ll be the first to say, “And then again, I might be wrong.” Finally, I have and continue to receive excellent medical care in all its forms and healing is always ongoing. There isn’t a stopping point, meds can be adjusted, changed, etc., and at every turn, when I have encountered a problem, I received help in addressing it.

With that said—

Recently I have had an acute awareness of one-year anniversaries in my cancer journey. I think this is a big part of integrating the what-the-hell-happened experience of cancer. It seems unreal at times, impossible to comprehend. The brain and body are still softening the blow of the trauma of it all. They gently pull back paper-thin layers of memory, nothing too thick or sudden, more like flakes off of a phyllo pastry. And every now and then a quiet internal calendar dings for my attention.

March 1, 2012 Customary bell ringing when a patient has their last chemo treatment.

March 1, 2012
Customary bell ringing when a patient has their last chemo treatment.

In late December, I had my last treatment of the stealth antibody Herceptin that I received by IV every three weeks. The nurses had me ring the bell when I was done even though I didn’t feel like I’d accomplished much. Herceptin doesn’t have the brutal side effects of chemo, ones that take out even the best specimens of health. So it didn’t feel like a big deal to be finished with it.

The one thing that the drug can affect is the heart so every 3 months or so I’d get an echocardiogram. This wasn’t too bad because I’d gotten to know the technicians pretty well over the last year. One is from a small town in central MT, and the other did several tours in the army and really doesn’t face anything on a daily basis as tough as that. The small town boy had a poster of a highway in front of the treadmill so if you’re on it, you can imagine going down a road. Even better is that the guy had taped cutouts of elk, bears, wolves, and moose to the picture. I’m thinking this could be an advanced heart test if he turned the lights off and the eyes glowed in the dark.

What I really enjoyed of the echo was getting to see the images and hear the sounds of my heart pumping happily away. I didn’t have any side effects from Herceptin, but it did cost $8,000 per treatment so I guess it was significant. It costs a lot to stay alive and that doesn’t even count groceries.

March 1st marked 1 year since my last lethal-to-fast-growing-cells chemo. Also in March, at 18 months from my diagnosis, I was able to hike to the top of a trail. Only when I was on the mountaintop did I realize what day it was. For over a year I could only imagine this trail. I didn’t know when I would be back to this vista and be able to smell the pine trees and the thawing earth. It was beautiful. One thing about the cancer experience for me was that my emotions were completely taken over. I didn’t feel overwhelmed just entirely full. I could look at the mountains and only think about how beautiful they were; I couldn’t feel it. As my health returns, there is room again for the deep feeling of gratitude for living in this gorgeous landscape. That’s how I know I am well. I’m ringing that bell.

IMG_1422My last significant date in March was my three-month check up that showed NED (no evidence of disease) was still alive and well and so was I. This didn’t feel as significant because I knew I was healthy. Back in December 2011 when the ultra sound technician could barely find the tumor in my breast after “only” 4 chemotherapies, that was amazing!

Now I’m to the point of having one year down of the five that I’ll have to take the aromatase inhibitor Arimidex. This is the little demon that’s causing me the most trouble right now. This week I ended up in bed for three days totally exhausted. I know that I was fighting a bug but the hit-the-wall fatigue got my attention. It should make sense that after all that I’ve been through with chemotherapy, infections, surgeries, and a year of a high-powered cancer-blocking drug, that I would still be tired. But I don’t want to be tired. Instead I think about how it’s been over a year since chemo ended. I should have bounced back by now.

Then I remember how I was feeling pretty good (relative to what I’d been through) two months after chemo ended and before Arimidex started taking effect; but then, this little, seemingly innocent, white pill that costs only $20 for 90-days worth, started taking me down. A year later and it still makes me hazy, tries my energy, causes joint stiffness, and aggravates newly-formed arthritis that at times leaves my left thumb and wrist swollen and in stabbing pain. (It also is doing its job on the cancer-fighting front, but right now I’m looking at the dark cloud not the damn silver lining.)

IMG_1458Sometime in March the last domino tipped over and in addition to all the other irritants, I suddenly had lymph edema in my forearm and so many doctor, physical therapy, and every other kind of appointments each week that cranky doesn’t even begin to describe my irritation with it all. What little time I was able to work is now split in half with a new regimen of treatment. It took the swollen arm to wake me up and get me pro-active again; and even with the progress being made, I’m just generally pissed. I really want to be done with disruptions, but apparently that’s not yet an option.

The overwhelming tiredness this week stopped me in my tracks, and I had another Come-to-Jesus moment. My mind is not in charge here; I can’t think my way out of this; my body is calling the shots. So I take deep breaths, listen to people who can get through to me, and stop my mind from spinning out. Then I am ready to hear the wisdom of my body telling me to draw on what I learned during chemo. With chemo one is forced to sit with life as it is. There is no way around it. You have to give in to the long view and sink into some kind of acceptance. It is a bittersweet lesson, but in the stillness it whispers survival –whether you like it or not.

There are two intersections in Helena that are referred to as “malfunction junction.” Five streets with five different names come together to create the need for a very long but orderly traffic control experience. I’ve been thinking about the names of the crossroads of the different emotional and physical feelings I’m having right now. It couldn’t just be the corner of such-and-such and such-and-such. There are more than two avenues crashing together. So I’ve decided that I’m at the junction of F-bombing Mad Ave at still having to portion out my energy because of ongoing fatigue, Can’t Think of Words in Well Known Phrases Street like “idiot proof,” Acceptance Road which unpaved and in bad shape from winter, What-ya-gonna-do Humor Lane, and Business Route Mild Ongoing Guilt because I feel like I’m always behind. The only problem is that my traffic control often breaks down and no one can remember where the right of way starts.

IMG_1405There has been talk of putting in a roundabout at the downtown malfunction junction. The roundabout metaphor gives me hope. At least I can drive around in circles until people start honking at me, my dog throws up in the back seat, or I find the road I need. Even with all this mush of physicality, I am getting to do amazing work with the Truth in Progress documentary that will move into post production within the year. My business Life Stories is picking up and bringing me extraordinary experiences. I’ve been teaching writing classes, working with families to record on film their elders’ life stories, and doing some Life Stories coaching that uses writing as a way to explore one’s life direction. I’m grateful that all the treatments and medical practitioners and so many others brought me to the other side of cancer so I can live this life.

I don’t like accepting the setbacks, but writing all of this to you reminds me that setbacks are life, not a break from it. Cancer was part of my life, not a sidetrack. It’s all woven into the same fabric. At times, it seems really ugly but the weaving isn’t done. When I interview people to video record their life stories, I have the honor of hearing someone describe their life as one piece, the whole story arc, and what at this point matters most as they look back. I still have a lot to look forward to, more story to live out, warp and weft. At least, that’s what I’m counting on. I’m willing to accept that a hazy day in a hammock might be what the body has ordered but without the guilt. Four years from now, I want to look back on this time as a gift. Not that I had to slow down but that I got to slow down. I’ll let you know how that works out.

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  • David

    Marilyn, what a well written heartfelt story chronicling the past 18 months. The raw energy exposed caused me to feel the emotional roller coaster you have been on. I love that you recognize that you are living a committed and purposeful life, and the cancer is not something that disconnected you from it. Many blessings to you as you continue your healing process and continue to live in the moment. David.

  • Marilyn

    Thanks, David! xo

  • Wendy Thomi

    Thank you for sharing that. I am inspired.

  • Beverly Fox

    Marilyn, thanks for keeping me up to date.. love your blog.. where were you by that gorgeous
    swimming pool?.. looks heavenly – so do you. Bev

  • Marilyn

    Thanks, Bev. I was in Port of Spain, Trinidad & Tobego with my brother Curtis and sis-n-law Kelly. Fabulous!

  • Marilyn

    Thanks, Wendy!