Some random bits and pieces about my progress over the past couple of weeks:
1. Chemo
I received the first infusion of my new and improved chemo regimen last Wednesday. I was pleased to see that this medicine is pink! Don’t know why that made me happy, but it did. This drug is specifically formulated for patients for whom the platinum-based chemo drugs don’t work – which is what has happened in my case. I think it’s wonderful that they have such precisely targeted drugs and am grateful to the medical researchers who developed the drug (Doxil) and those who participated in clinical trials, etc. They’ve come a long way, baby!
I will receive this chemo every four weeks, so I don’t need to plan a weekly trip to Hollywood as I’ve been doing since September. I have not minded the trips since I always coordinate with someone to drive me – and have used that precious time to deepen relationships with friends and acquaintances.
2. Genetics
A couple of Sundays ago, at the beginning of our service at my spiritual center, a friend slipped me a small newspaper clipping titled, “Support for hereditary breast, ovarian cancer.” It was an announcement about a meeting that was happening that day – starting at that very hour and scheduled to last for four hours.
The group is called FORCE (Facing Our Risk of Cancer Empowered) – and is a support group for those who carry the genetic mutation for breast or ovarian cancer. The venue was just a few blocks away, so I decided I would attend, even though I’d be late. I was welcomed into the circle of about 15 women and one man and heard their stories about making the decision to have a prophylactic mastectomy in advance of any cancer diagnosis. I was the only person who had not yet had such a surgery – and it’s a decision I will need to consider since I carry the BRCA1 gene.
According to the National Cancer Institute, having such a proactive procedure can reduce my risk of developing breast cancer by 95%. As compelling as that is, the idea of having a mastectomy is still frightening. I know that medical science has advanced tremendously since my mother’s two radical mastectomies back in the late 60s and early 70s which hollowed out her chest and disfigured her horribly – both physically and emotionally. They didn’t do any kind of reconstructive surgery back in those days – at least not in Saginaw, Michigan where she lived. And there were no support groups of any kind to help with her emotional trauma, either.
But these women – and the one man who had had a double mastectomy after his breast cancer diagnosis – were supportive, positive, courageous and generous in sharing information about their own personal experience. After the shares, several of the women retreated to a smaller private room, where they did “Show & Tell.” One at a time, they lifted their sweaters and showed off their new boobs. It was shocking and reassuring at the same time. For most of them, their nipples were intact, but a couple of women had very impressive nipple tattoos.
Most of the women had opted for larger boobs, which requires two surgeries: one to remove the breast tissue and insertion of “expanders” to stretch the tissue and skin to accommodate the silicone implant that will be larger than the original breast. There were stories about drains and pain and infections from these expanders. But one woman, who seemed to be in her 30s, had a procedure she called “one and done.” She did not go larger – and was able to have the breast tissue removed and the silicone implant inserted in a single surgical procedure. Sign me up for that one, please! I’ve had a lot of dissatisfaction with my body (legs, thighs, butt), but I’ve always been okay with my boobs. They’re small but perky. Never having nursed a baby, they don’t sag. And since the invention of adhesive silicone bras I haven’t worn an uncomfortable brassiere in a long, long time. Such freedom!
The meeting reminded me of an important conversation that I’ve been putting off: My three siblings have a 50/50 chance of having inherited the same mutation. Not an easy thing, to recommend that they get tested, but I handled those conversations this week. It feels good – and responsible.
And if you think that such tests are prohibitively expensive – they’re not. A company called Color Genomics will send a test kit with a simple cheek swab that analyzes 30 genes to help women and men understand their risk for the most common hereditary cancers, including breast, ovarian, colon and pancreatic cancer. The cost is $249. (In my case, since I’ve already tested positive, they have a family plan so that my immediate family could be tested for only $50.)
Despite my mother’s lifetime battle with cancer, I never considered getting tested prior to my diagnosis. Nobody ever asked and I never looked into it. And, frankly, I’m not so sure I would have wanted to know. But from where I sit now – knowledge is power, and if one knows he/she has a genetic predisposition – there are proactive steps and relatively non-invasive procedures (like a laparoscopic hysterectomy) that will significantly reduce one’s risk of developing cancer.
Once again, we benefit greatly from advances in medical research.
3. The hair!
It’s growing back! Fuzzy on top, and thin, but it’s possible that in another month or so I’ll have enough hair to go wigless (which is getting really tiresome). My eyebrows are growing back – unevenly. And eyelashes (thank God!) are coming back. I don’t think I’ve been too vain through my chemo treatments but losing eyelashes was just about the worst possible thing. But they were the last bits of hair that I lost, so it was very temporary. My new chemo doesn’t cause hair loss, so the regrowth will continue. My lashes are probably 1/32nd of an inch – barely enough for a bit of mascara.
I tried false eyelashes. Found a wonderful product from a company called Thrive Causemetics, which specializes (in part) for women who’ve lost their hair. I ordered a pair of natural-looking lashes since I wasn’t after a Kardashian look. Trouble is, I’ve never worn false eyelashes in my life. The YouTube videos made it look so easy. As someone who rarely takes more than about 10 minutes for a makeup regimen (toner, moisturizer, foundation, mascara, blush and lipstick and I’m done!), it was depressing and frustrating to spend 15-20 minutes applying (and re-applying and re-applying) these lashes – only to end up looking like a drag queen after a really tough night.
But through it all, I might have found a new, cheaper way to do an eyelid lift without plastic surgery. I discovered that if you get enough eyelash glue on your eyelids, all the folds and wrinkles fuse together!
Chantal Bally
January 30, 2017Hi, Marilyn,
I am Marie-France’s sister and partner (Venice à la Carte) in Venice. We follow your personal blogs and wish you all our very best. Your blogs are really great, we share your experience, difficult as it may be. In Italy, some people don’t even mention the word “cancer”, they just call it a “brutto male ” – a far cry from what you are doing. I think it helps to talk about it, both for the writer and the reader. A very big hug from both of us, and we hope to see you soon in Venice!
mmurphy@thectpgroup.com
January 31, 2017Mille grazie! Appreciate your support, and writing about my experience is very cathartic and healing. And, hopefully, helpful to others who are so fearful that they won’t even say the word.
I hope to come back to Venice one day soon. I have such fond memories of the project we collaborated on for my customers in 2014.
Ciao bella!
Marilyn
Angel O'Hanlon Tinnirello
February 1, 2017You are right. Information is power. You have made me more aware of the potentialities and I will review, with my doctors the answers I give to the surveys we all answer before the start of any routine check up.
As for the eyelashes and eyebrows… I have only worn false lashes rarely, was blessed with great lashes when younger and even now they are pretty robust, but I could never master the false lash and was glad when a professional did my make up and applied them.
Sending all good thoughts for your success with that hot pink stuff in your new medicine!
Brenda Skelly
February 10, 2017Marilyn thank you! I was heartened to know that this chemo was positively received (as well as pink). Reading your blog this morning was a breath of fresh air.
When you have time to meet up let me know. Love to see you again.
xoxo
Maurci Martin
February 16, 2017Brave girl! You can’t keep those Irish down! Your underlying sense of humor about all the frustrations,and indignities associated with available treatment for cancer has got to help others in similar sitiations keep it together! Lots of love and healing thoughts on its way to you!!
Ellen Borowka
February 23, 2017Hi Marilyn, We are thinking of you with love. You are a light in the world… thanks for being you! Love, Ellen & Dana
Elaine
March 3, 2017Hi, Marilyn!!
Want you to know I’m thinking of you!❤