 |
On 20th June 2011, I went to the GP about a fast growing lump that had noticed around two weeks earlier. It had probably been growing for about 2 months and was first the size of an almond, then 2 almonds, then three. I was sent for a mammogram, 8 months after my last one, but this time I was diagnosed with breast cancer. A week later came biopsies, then a week later my results and a week later a proposed lumpectomy changed 5 minutes before surgery to mastectomy number 1 in which I'd go from a woman with nice convenient, symmetrical 14C breasts to being a one breasted woman. I explored mastectomy tattoos and wondered how I'd live with this new body.
At home, all my old clothes suddenly belonged to another world, a breasted world, because I knew that my type of cancer had such a high return rate I'd be getting the other breast off too, and that I was going to choose the Kiera Knightley flat chested look and going to go without reconstruction or implants. I was given a mastectomy bra and breast forms, but emotionally and mentally this just didn't work for me. My mastectomy bra seemed 'medical' and I wanted to feel natural. I tried a sports bra which flattened out Ruby (I named my remaining breast Ruby as in 'one booby Ruby') rather than looking to support or present my remaining breast. But much of the time I found the sports bra too tight around the arms or underneath the breast area. I tried stretch lace 'boob tubes' which were great until they lost their elasticity. The more I wrangled with clothing, the more I wanted physical freedom, comfort, naturalness and clothes that would feel 'honest'. I wanted clothes that enhanced my fitted my identity, my personality, my personhood and still suited my body. One week after my first mastectomy, I had more news. My 2.3cm tumor turned out to be 3cm and I was now going into chemotherapy.
The oncologist told me I had a 1 in 4 chance of being dead from secondaries (metastisized cancer) in the next 10 years if I didn't do chemo, then 5 years of the estrogen blocker, Tomoxifen. He told me that if I did chemo then 5 years of Tomoxifen I could half this to only a 1 in 8 chance (though not factoring in my immune deficiencies which remain a rather unbeneficial 'wild card'). This was based on correlating research findings with the 4 features of my tumor. I wanted a second opinion. I did an art sale to raise the money for it and got an Oncotype DX test. This test would look at 20 features of my tumor. My tumor was sent 10,000 miles across the ocean to be spliced up and examined in detail. The results completely backed my oncologist.
I grounded myself with Pubmed and read Quackwatch when inundated by every armchair guru determined to convince me that I could cure myself with fairy dust or their book (20% of cancers go into spontaneous remission regardless of what fairy dust is used, but EIGHTY PERCENT don't and a quick look at Google images will show anyone what happened to those who waited to find out they weren't the 20%).
Chris and I got gene testing with 23andme to check if I had the BRCA genes and to be aware of any other reason for the very high cancer rates in my mother's side of the family. I did yoga daily, walked, laughed, loved, ate well and took supplements that the oncologist had approved.
I pruned the garden of friendship and put the weeds aside and discovered flowers I hadn't noticed amidst the previous clutter. I counseled my friends in how to most healthily be of help (thank you you angels, you know who you are). My wonderful husband Chris and I celebrated each day and the sacrifices I was making to get a longer 'expiry date'. I embraced healthy love and care and counseling and lived, loved, laughed, philosophised, painted and wrote my way through cancer. And I educated people about how no cancer, not even breast cancers are 'exactly the same' as their Aunt Mary had, that every breast cancer has its own type of cells, stage, grade, hormone receptivity, prognosis, tailored treatment and wider social and personal context. I stood up for the sanctity of my relationship as the occasional narcissist saw my cancer as their opportunity for a self inflating 'Oprah moment' and reached out to 'support my husband' in his hour of need (er, thanks Dear, we're fine ;-)
Though I beat cancer to it by giving myself a chemo cut,
 |
within a month of chemo even stubble was falling out and after three months of chemotherapy and I was bald from head to toe. I had lost most of my eyebrows, all of my body hair, my nails were ravaged, brown, ridged and broken, and there was not a hair left on my head.
I wrestled with the pervasive indoctrination that women's beauty boils down to her breasts, hair and nails. I looked at pictures of beautiful bald women and convinced myself that bald could be beautiful through the Australian summer and whilst I developed a great collection of gypsy headscarves and funky hats, I also learned what worked with going boldly forth as a bald woman (you'd be surprised how some dress styles actually work with baldness!). Through my journey I made blogs and videos and had been a peer support to other women with breast cancer who contacted me.
Six weeks after the end of chemo, I got my 2nd mastectomy and left the world of asymmetrical one breastedness behind. I became breast free. I chose no reconstruction, no implants and to go without breast forms. With each body transition, I battled to find clothing in a symmetrically breasted world that obviously couldn't imagine a mastectomied chest. I also needed clothing I could relax in, go back to bed in (post chemo I needed rest) but still go out in and clothes that I could still feel attractive in. Medical bills and inability to work dented our finances so buying recycled clothes was a hobby that became really useful now (and new mastectomy/chemo clothing seemed too 'one size fits all' in style and very expensive). I embraced the adventure of developing a wardrobe full of recycled yet funky and still mastectomy-friendly styles that worked for one breastedness. Then I developed one for my new life as someone going breast free.
I'm doing well, feel healthier than I've ever been, and as far as I am concerned, I am cancer free until further notice.
Did my hair grow back? Did I get my energy back? Here I am dagging about 5 months after chemo :-)
So am I cured? Nobody can actually say that. Cancer is a process. That process can go into remission. Mine is in remission. The oncologist says that if I live to be seventy and die from being hit by a bus then we'll figure I was 'cured'. Will cancer come back to my breasts? Nope, they are gone, so that is highly unlikely. Will any stray cancer cells from my tumor still be out there, having survived chemo and starvation by Tomoxifen and rear up and develop into secondaries in the next 10 years? Well, not factoring in my immune deficiencies (there's not enough literature to say how that figures, even though its a no brainer) there's around a 1 in 8 chance of that. But (not factoring in my immune deficiencies) there's a 1 in 7 chance that I'll be fine. And if we factor those in? Well, I don't think that's worth me stressing about. Fact is around 30% of women with breast cancer may have it recur. Living with immune deficiencies might tip the scales in a way that I'm not in the lucky 70% who stay in remission. But stats are only stats. People defy stats all the time. I may have more chance of dying from cancer in the next 10 years than throwing a yahtzee (1 in 22) but isn't that a good thing? To live as though you may not make it to 60 or 55? To insist on laughing, loving, living life as a gift with all its good, bad and ugly ... for the bad and ugly are there to make the good seem such a buzz :-)
People say any of us could be ran over by a bus tomorrow. I wanted to know the stats on that. Apparently it's around 1 in 2 million chance per year so multiplied by 10 years we each have around a 1 in 200,000 chance of being ran over by a bus. But we do all have a 100% chance of being dead by the age of 120 year old and most of us will be gone by 85. In ten years from now (2012) I will be 58 years old. So if I'm gone in the next 10 years, at the age of 58 by then, I'm making sure I've fitted 85 years into that.... or I could consider it to be a dyslexic's version of 85 :-)
FINALE
In September 2016, aged 52, I learned I was not in the 70% whose primary breast cancer is treated and never comes back. 4 years and 10 months since the end of my treatment for primary breast cancer I was diagnosed with metastatic breast cancer. A few stray cancer cells from my original tumor in 2011 had survived and mutated to no longer be estrogen receptive and held back by estrogen blockers. I was now triple negative and cancer had spread through my blood and lymph to take up home in my liver and spine. A week later I began chemotherapy for innumerable tumors to my liver.
In spite of the quackery all over social media, metastatic cancer is not a curable situation. Of 10,000 metastatic cancer patients only 1 in 10,000 will ever go NED (No Evidence of Disease) and indefinitely stay there. Whilst those with metastatic spread to bone and only minor spread beyond are known to sometimes last years, even up to a decade with their cancer, those with extensive metastases to their liver tend to survive 3-16 months from diagnosis. Weekly chemo for what will be the rest of my life merely extends the time one has. This became my life.
It has not been a miserable life since September 2016. It has been a magical, poignant, epic, fun, spiritual one of transition and connection and being completely at peace with my lot. In October 2016 I turned 53 and threw a birthday party and living wake which was awesome. In December 2016 my husband Chris and I celebrated our anniversary of 17 years and 16 years of marriage as life partners, family and best friends. We transitioned the cats, our friends and I helped Chris transition and through this transitioned myself from my 'resident status' to 'tourist'. I have no regrets whatsoever. It has been a wonderful life fully lived.
Sincerely, Polly Samuel (aka 'Donna Williams')