On being a modified radical.

Early 1900's radicals to inspire us all.
Early 1900’s radicals to inspire us all.

By many accounts I was a radical before any of this cancer-ing journey began – starting a worker cooperative is enough for that title.  Plus I believe in lots of “radical” notions, like universal health care, environmental stewardship, self education and homebirth. I believe in a loving creative god, the consciousness of the entire universe, which doesn’t smite anyone or anything for punishment. I love birds and trees and making art. I think Dr. Bronner was right, All ONE or NONE.

Last weekend I had a dream that we were setting off explosives in the street next to the toy store in town – it was for some sort of construction or something. (Sorry Katy & Bill!)  Several of us were hiding behind a building waiting for the blast, when I remembered we hadn’t put out any safety cones. So I ran back over to warn people, only to discover that there was a parade of Anarchists coming up the street. “Look out!” my dream self yelled.  “Get out of the street! There’s going to be an explosion!” Being anarchists most of them weren’t interested in being told what to do. And I watched as the pile of explosive stuff went off in slow motion.  When I talked to my friend Kestrel about it, she thought the images seemed like something at the cellular level. Of course it was – the anarchists (cancer-ing cells) were having a parade (tumor party), and I blew them up (chemo & surgery). Obviously my subconscious is coming to terms with the mastectomy.

Hair is starting to grow back.
My hair is starting to grow back.

If anything, the number of “radical” notions I possess has increased as a result of this journey.  Physically, however, I have become a modified radical, as in a woman who has had a modified radical mastectomy, or MRM.  A modified radical mastectomy means all breast tissue is removed, leaving the muscles of the chest wall intact with the skin neatly stitched back together. Interestingly, I am surprisingly okay with having become a modified radical Amazon woman.  My chest on the right side looks much like an adolescent boy’s – there is no bruising to speak of and I will have a fetching scar. My pectoral muscle, defined by lifting 50 pound sacks of sugar and flour at the bakery, is now visible without the “camouflage” of my breast. As a result, I am sporty and buff looking when seen from the right side.

"Sportier" profile from right.
“Sportier” profile from right.

In the breast department, I am grateful to be a modified radical rather than a straight up radical.  Historically a radical mastectomy, RM, removed not just the breast, but the chest wall as well – often with devastating consequences.  Thankfully MRM surgery has replaced the RM in most circumstances.   If I had had surgery prior to chemo treatments, my surgery would have been much more radical, and like the mastectomies of prior decades, would have necessitated taking muscle in order to remove all of the cancer-ing activity that was present at the time of diagnosis.  Hence the neo-adjuvant chemo treatments for me, done with a goal of shrinking the tumors away from the chest wall, and maximizing my statistical survival chances.

Photo shoot with flamingo
Photo shoot with flamingo- (beautiful scarf from Bob & Victoria)

The new drug, Perjeta, was okayed for just the situation I found myself in – Perjeta is all about shrinking HER2+ tumors prior to surgery. Neo-adjuvant targeted therapy made a huge difference in my outcome.  We all remain somewhat shocked about the pCR. (The pathologically complete response.) The doctors do not have a unified opinion on what it means. There are not a lot of statistics for them to look at. We have been told that with the new treatments available for Breast Cancer the incidence of pCR will likely increase.  I still believe that the effectiveness of their western medicines was amplified by the other things that I am doing, especially the love, light and prayers that have surrounded me during this whole process.

One thing that changes for me as a result of the pCR is that I have decided not to do radiation treatments this summer. Radiation treatments are geared towards cleaning up any stray cancer-ing cells that are invariably left after surgery. In fact, local reoccurrence is sometimes stimulated by surgery. Local reoccurrence may lead to metastasis – which is the dreaded stage 4 version in which the primary cancer-ing tumors have ventured forth and set up camp in other parts of your body.  As you really only get one chance to use radiation, I am choosing to keep that tool in reserve for the unlikely chance that I do have a local reoccurrence.

The tools I will be using are based on food, exercise, and mental/spiritual work.  It is up to me to attend to the terrain of my body – to make myself incompatible with the return of cancer.  There are things that I could not do during chemo treatments, which I will begin now.  One thing I am looking forward to when my right arm is healed enough is to really explore creating delicious foods that support health and wellbeing by feeding the immune system.

I am still mending, a process which will continue for several months. Right now it feels as though I am still being modified, as I mentally and emotionally adjust to my new body.   Having had my axillary lymph nodes removed is changing how I will relate to and use my arm for the rest of my life. For now I begin the exercises to regain full use of it.

Last Tuesday when I went in for my second Herceptin infusion post chemo, I talked to another woman who started the same day as me.  She too just had surgery, though one week after mine.  It was a reminder that every day healing is happening.  I can do more today than just a few days ago.  I am sleeping a lot, which helps.  It was also a reminder of how lucky we are that treatments have changed so much for HER2+ cancer.  The chance for survival provided by these new treatments also lets us take advantage of the many new options for breast reconstruction that are available. It is now possible for each woman to choose what is right for her as she moves forward.  My friend chose to have a double mastectomy with reconstruction, while I chose a single mastectomy with no reconstruction.  I may have surgery on my left breast later in the year to create more symmetry, perhaps even a second mastectomy.

I feel good about my choice, in part because it is a choice.  In the case of a Radical Mastectomy there would not have been any option for reconstruction.  As amazing as the new treatments are, I think that the studies that have been done on the effect of patient involvement on outcome are equally game changing.  It is no small thing to feel as though you are participating in your own treatment, rather than being a passive recipient. Not only Anarchists dislike being told what to do.

My surgeon told me that she was hoping to present my case at a conference for surgeons in a few weeks.  I hope that she talks not just about the Neo-adjuvant treatments I received, but also about the ways in which I participated in my treatment, and how I came to terms with getting chemo in the first place. I hope that the ways of looking at and healing folks who are Cancer-ing will continue to expand. Perhaps becoming a modified radical will transform not just me, but some small piece of the world.

 

 

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9 Comments Add yours

  1. Katie and Bill - Purple Cow Toys says:

    Iris! What a ride you have taken. You and all your family and friends too. You are right – you are surrounded by love and it certainly has been a crucial part of your treatment. Purple Cow Toys is truly flattered to be the location of your cancer bombing dream. We are glad that you must have received our messages of support that we have all sent through the airwaves. Power to You!
    Katie and Bill

  2. sortingthingsout says:

    Iris — and Joe and Sam and Martin,
    Iris, It is so heartening to feel that you and your strong spirit and strong mind and strong body will grace us with your presence for a long time. You inspire me (as you always have, even when you didn’t face a life-threatening situation). I want to say “more power to you,” but I don’t know if you have any more room!

    Stay well and healing and positive, though I know you will whether I suggest it or not. That wish goes to the entire family.

    Love, David

  3. Connie Jackson Eschinger says:

    You already have made a difference in people’s lives. I look forward to hearing your thoughts throughout this journey you and your family are on…I agree with you… I hope your Doctor does mention how big a role our minds play in sickness and in health. Your mind can play a part in making you sick so obviously it can play as large a role on making you better.
    Hope you are still using your laughter to get you through the day..I can still hear it…..
    Best of everything
    Connie ( Michelle Jackson’s mom in law )

  4. Eileen says:

    You look so happy in the photos. The bright colors are so you. Everyone is happy and grateful about the recent turn of events. It still put a huge smile on my face when I think of it. I am happy that you will be able to do other things this summer instead of radiation treatments! Love Ya Hugs to the family.

  5. Vicki baker says:

    Dear Iris,
    Jan and I have recently returned to Astoria and we were so happy to read that your surgery went well and that you are now back home here in Astoria and recovering well. You look wonderful in your new “buff” profile. Your writings on your blog are beautiful and inspiring to read, and good reminders to take time to enjoy the natural beauty around us and the beauty of the loving friendships that are such a wonderful part of this community.
    Wishing you well as you recover and sending my love,
    Vicki Baker

  6. Sharyn says:

    I continue to be overwhelmingly thankful to you for your gifts…including your embracing the sharing of your cancering journey. More than once you writings and thoughts have inspired me. We continue to send love to you, Joe, Sam and Martin.

  7. margaret sullivan says:

    thank you for the update Iris, it helps me understand it too.
    lots of love
    Maggie

  8. Joseph Stevenson says:

    Iris you’re about as radical as it gets. You shine brighter than ever despite all the slings and arrows that have come your way. So many will follow the light you throw on what’s important, much as we followed our flickering lights down to Alderbrook beach in years past to welcome the turning of the season. How lucky we are to have you with us and to hear your voice so strong and clear. May the season turn with you and blossom in abundance for you and yours and your lucky neighbors.

  9. sue skinner says:

    Your surgeon would do well to take you with her to the conference so you might speak to the attendees yourself. A memorable conference for me was a heart disease wingding when an actual patient came and talked about his valve surgery–a new procedure at that time.

    Thanks for all the information and intertwining and inspiration and beautiful photos and humor in your writing. And Happy Birthday!

    Much love to all of you–

    Sue S

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