Yes, I was diagnosed a little over a month ago. Invasive lobular carcinoma of the left breast. Probably the same cancer that killed my mother. But if I’m honest, crack cocaine hastened her death by decades, at least as much as her untreated breast cancer that eventually metastasized. My cancer is giving me the gift of remembering so much about her and about her hard life, her shitty choices, her addictions, her incredible intellect and sense of humor, and her deep love for us kids. One of the last things she ever said to me was, “The best thing in my life, the best thing I ever did, was have you kids.” And she meant it with tears in her eyes and a body like an empty bag of skin and bones. She would be gone a few weeks later. I was 24 and could not fix the unfixable. And that time in my life was about as hard as it sounds.
Cancer makes me mad she’s dead, mad she made the choices she did not to seek any “western” medical help. Mad she was flooding her body with carrot apple juice and orange juice and rice on the Gerson Therapy when cancer cells, we now know, have the highest amount of insulin receptors of any cell. She was feeding her cancer with tons of sugar with all those juices on that idiotic vegan protocol. I know this is stupid now. So do the doctors I consulted, including the ones who have cancer-centric, integrative functional medical practices. I didn’t know anything then, but I was just a kid trying to believe she would be ok eventually. I was the queen of magical thinking. Her death made me make a hard turn into a new life four months later, a new path away from her lifestyle of destruction that had become my lifestyle of destruction. And now, more than 28 years later, cancer is teaching me I have to forgive everyone for everything. Again. And so I must revisit my mother’s untimely death at 53, and forgive her for dying, for leaving us, for every last little thing I ever held on to. Again. Doing so is helping me live at 53.
The day of my diagnosis, my doctor called me to tell me I have invasive lobular carcinoma in the left breast. I was sitting down but felt like I need to sit down anyway. She said something about genetic testing since my mom died at 53. “I’m 53 and I’m alive” I want to say. I am silent though, and instinctively started taking detailed notes. I noticed I needed to breathe when I sucked in air involuntarily. I didn’t know I was holding my breath. She asked me if she can make some appointments for me, with her breast surgeon and her oncologist. I say sure. I need help. Then I thought, “At least I know I need help.”
There are people I need to call, a list starting with my husband Fred. My sister. My dad. My brother. A friend who knows I was waiting on biopsy results. I worry that they will have a hard time with this news but I start calling. I swing from knowing in my heart it will all be alright someday to hot tears spilling out of my eyes on to the yellow legal pad, tears that create blue ink rivers in my notes.
After the many calls I go home and we talk again. Fred is strong. I don’t know what to say. I am fearful and I am also fiercely determined. I’m grieving my mother again, and her choice not to have a mastectomy. Would she be here now if she had? My Aunt Gloria, my godmother, calls me and says, at age 85, she wishes she could sweep me up in her arms. And then she tells me her cancer story. My Aunt Cathy calls and tells me she loves me; that cancer is survivable and then she tells me her cancer story. Their stories have good endings. I need them and I need their stories with good endings. I am not my mother. I am alive. It feels like I have been studying health and cancer since my mother was diagnosed in the 1970s. I have so much information. I read my faxed pathology report where my doctor states I am “highly intelligent and well-informed, a reader.” That makes me happy. But it also says I have cancer.
That night I slept fitfully and woke up at 3 a.m. to the dog barking. The moon was nearly full. I walked to the front of the house and peered out the window. In the yard and in the street are the elk, standing and shuffling in the cold air and looking at me looking at them. I can feel their strength and power. I can feel there are greater forces at work that I cannot possibly understand. The elk move away towards the open space, coats rippling in the moonlight, liquid black eyes looking at me. I feel such a cloak of comfort from them. I am able to sleep afterwards. And then they stay around me in the open space for another 4 days.
It’s just the first night. So I don’t know what will happen or what I will decide to do. I am meeting with a breast surgeon, an oncologist, a radiological oncologist and a functional medicine oncologist. I had genetic testing and will know in 3-4 weeks if I have the BRCA-1 and BRCA-2 mutations. I make lists of questions for these doctors. I try to talk about how I am feeling with people I can trust. Everything is different. I have to learn the lesson of taking care of myself. It’s a lifelong one. But for those first four days after the diagnosis, I walked with the elk herd and felt so alive and grateful.
Cancer is a puzzle of genetics, what turns genes on (epigenetics), stress, diet, thinking, environment and other factors. We all have cancer cells in our bodies. And our immune systems dispose of them. Or not. Cancer is making me look at the stress I perpetuated in my life, from deep in my childhood through adulthood. I am meditating again. I am slowing down. I am saying no. I am back to writing. I am speaking my truth without fear. I am eating a strict ketogenic diet. My doctors told me my nearly ketogenic diet for the last 17 months slowed the growth of this cancer, that they are certain of that. Now I am more strict and testing for ketosis a few times a day, eliminating foods that throw me out of ketosis. I am actively starving my cancer with ketogenic eating.
I already have a very positive attitude and I am grateful that is my nature. Magical thinking is not all bad and it’s worked for me in a lot of ways. But I do not like or appreciate the tyranny of the New Age movement that tells me I caused my cancer, that if I was just was more positive and had better thinking, I would not have it or that I can cure it solely with my positive thoughts. Or that this is karma for past behavior and thinking. If you believe that, keep it to yourself. I don’t need your punishing New Age bullshit, thank you very much.
That said, I take responsibility for my treatment and healing. I take responsibility for the road I am on, the road I am choosing. Some of my doctors disagree with it (such as my well-researched choice not to take Tamoxifen for the next 5 years). Some of my friends, vehement vegetarians or vegans, none of whom have ever had cancer, none of whom are doctors or healers, who are, God bless them, trying to control the situation, and want me to “cure” myself with you name it: Rife machines, other kinds of electronic zappers, Reikki, the Budwig protocol (an unproven diet plus flax oil is totally contraindicated for breast cancer), the Gerson Therapy, high intensity heat therapy and other “cures” from German and Mexican clinics, shamans, biomats, aqua-chi, magnets to tape on my boobs, eating only raw food, rebounding, baking soda, cold laser, black seed oil, medical grade hydrogen peroxide, high doses of curcumin, $4,000 water alkalizing machines, etc. I appreciate that they care and want to help. I do. I actually already utilize many of the things they are suggesting (I’m teachable sometimes in a laughable way) and have done so for years. I still ended up with a cancer diagnosis. Many of these therapies or methods may be helping me but they clearly don’t cure cancer. I love all of them for wanting to help by the way, and I have been that person wanting to help too. But please do not call me or email me with your latest cure, “proven” only with testimonials, that you read about on the internet. I don’t need that information. I have so much information. I am an excellent researcher. And maybe consider that I have been interested in reading about cancer cures for many years, maybe since my mom’s diagnosis when I was 15. Please consider that I am tired of saying, “Thanks but no thanks” when you tell me I “should” do this or that and worse, imply that if I don’t do what you are suggesting I do, I’m going to die. Not helpful.
Cancer is becoming a gift but it’s too new for me to understand in any complete way. I experience such a range of emotion every day it is like a roller coaster. I am no spiritual giant, and I have to let the emotional storms roll through. And like the weather, this too always passes. When I forget to pray, which is often, I am reminded to do so sometimes harshly; forced into prayer while I’m in the deep troughs of my fear.
But hey, the doctors think it is early. I do too. There is a lot of good news. This cancer was detected via biopsies after not showing up in 2 mammograms, not showing up in thermography, not showing up in 2 ultrasounds and not showing up in an Oncablot blood test. My internist told me I really needed to get a biopsy and then my doctor, Kelly MacAleese at Women’s Imaging, agreed and ordered an MRI. Based on the MRI, she did five biopsies which resulted in my diagnosis. So Dr. Lipper and Dr. MacAleese saved my life. Thank you incredible women. I am their patient but they are more than just my doctors. Invasive lobular carcinoma is rare, and usually is found after it is in several places. I am so lucky to have cancer, as odd as that sounds. But it is just the truth. I am lucky.
I am scheduled for a bilateral mastectomy on June 17th. I’ll be in the hospital overnight and then home for 2-4 weeks, (I’ve been told a range of 3-6 weeks so I am of course trying to control that by arbitrarily announcing a change in the time frame because of my unique healing capabilities which have never been tested). I’m also told I will be unable to drive for 30 days or lift anything over 10 lbs for 6 weeks (again, clearly absurd instructions for someone like me but I will try to keep an open mind). I expect I will be working an hour or two a day during my time at home (and I may have just made that up as well but it seems likely). I’m being funny because I can’t help it. But I promise I will not rush my recovery. Please remind me of this promise.
Approximately 3 months later I will have reconstructive surgery, be in the hospital 3 days, and that will have a 4-6 week recovery according to the docs. What I think I am getting, subject to me changing my mind or the doctors determining I do not have adequate body fat, is what is called a DIEP flap reconstruction. That means they will take my own fat and create boobs. If they determine I don’t have enough fat, I will feel awesome about that and want that news in writing so I can frame it next to the bathroom mirror and read it every day. If I chicken out because it is such a big surgery, I will get a smaller surgery that involves just implants. We’ll see. Regardless, my medical team has promised me I will have the boobs I always wanted in high school.
My spirits are pretty good; I’ve had second opinions in oncology and plastic surgery, and 2 integrative medicine oncological consultations as well, plus an assessment from a former cancer specialist in NYC who is a friend’s father. I now just need to see both an Amazonian witch doctor and a Masai shaman to complete my preliminary research into my condition. I guess I should not be surprised that one of my consulting physicians called me a “hyper Type A”.
So, I’m in good hands and will know more in terms of the stage of the cancer and prognosis after surgery. I feel optimistic, scared, determined, weepy and grateful. And very weepy the last few days now that I have a surgery date. All the research and second opinions filled my head with facts and figures but now I have to be in my heart, because I need to have faith that this will go ok, and I probably need reminders and help with that.
One friend, out of the blue, had a beautiful blanket knitted for me (see photo above) and also had it blessed by his pastor. Another friend gave me a gorgeous piece of Ledger Art by a Mescalero Apache artist. My Muslim friends at our favorite restaurant told me they are praying for me, and so are some Buddhists I know and a ton of Christians. My dear friends who are on the Red Road conduct a healing sweatlodge ceremony every Thursday night that I attend when I can. I feel those prayers. I want all of your prayers. I am not afraid to ask for them. So please pray for me, or if you do not pray, send good vibes. Thank you in advance. I know I am surrounded by good people and good doctors and good, healing energy.
I have a lot of people to thank already for all sorts of reasons, including Fred of course, my sister for coming to all the appointments, my dear, childhood friend Kitty for taking a week out of her life to stay with us after surgery to ease me into recovery, my associate attorney Angie and my paralegal Amanda for pitching in so much during this time to cover my ass at work, neighbors too numerous to name, friends near and far who have offered to bring dinners and drive me places. I’d also like to thank Alison Gannett for paving the way with her cancer and helping me with ketogenic eating, Dr. Carol Lipper and Dr. Kelly MacAleese for saving my life, Dr. Nasha Winters for running extensive genetics and showing me I have a genetic mutation that would make Tamoxifen ineffectual and make me prone to side effects like uterine cancer, my extended family, my dear friends in Crested Butte where I grew up, my friend Gina who took me to Sayulita for a very needed fun-filled week, my wonderful friend Robyn who explains the inexplicable, Constance who keeps me beautified and is so upbeat, my brother Mike who is always checking in on me and also his beautiful family, my new friend Shelly who I met walking down the street watching the elk, who is 6 years into her cancer journey and helping me with such selflessness, my dear friend Barb who tells me she know the angels have this situation, and have me in their arms, the animals who have come around me to help on a level I do not understand and cannot explain, and all the other forces in the universe helping me to change my life. It is overwhelming to feel these waves of love and help. And humbling. Please think of me on June 17th, and in the weeks after.