I have advanced invasive breast cancer with possible metastasis. The cancer is in both breasts and I won’t know if it has spread to other organs until after surgery. I always thought if this ever happened to me, I would be utterly devastated. I’m not. The diagnosis has changed my life for the better. I hope during Breast Cancer Awareness Month, I might inspire some women and men to get preventative care against cancer and also help remove the stigma that is somehow still linked to cancer.
Let me back up a bit.
Cancer is in my family, so there was always that possibility. Still, it was a shock. When you face your mortality straight up, life takes on a whole new meaning and I began to treasure every good thing. I get to tell my daughter, my mother, my siblings and all of my family and friends throughout my life know how much they they have meant to me. I get to do that every day whether I’m here a month, a year, 10 years…
I had yearly mammograms for 15 years and often had abnormal results, which always lead to diagnostic mammograms and maybe biopsies and once a surgical removal of precancerous cells. After my last two mammograms came back negative, I figured I was in the clear. A year here and there went by, I moved a lot and was dealing with life on life’s terms. There was no time for a mammogram—why that could take a life-saving 30 minutes out of my day. Too busy!
But last June I had a physical and during the yearly exam, my doctor asked if I had any breast issues and I said no. I hadn’t given myself self-breast exams and she didn’t feel anything so again I’m thinking, no worries. I said it’s been a while since my last mammogram—at least a couple of years (turns out it was closer to five years) should I get a mammogram? She said probably and she referred me. I went a week later. The radiologist wanted to do the diagnostic/ultrasound after I told her about my history, but my doctor said just do the normal one. I was a fairly new patient and she wasn’t aware of my past history. Turns out there was a thickening, a density found that was of “concern” and I needed to get the diagnostic after all. Still, I didn’t worry - been through this before. I’ll get it done and maybe I’ll have to get a biopsy. But since I was once again on the move I scheduled the diagnostic over a month later in the town I happened to be in. Just get the stupid thing done, Leslie. They probably do these unnecessary tests, biopsies and surgeries on women to make money, right? Not in my case.
I went to the medical center in mid-August and everything was par for the course. I got the diagnostic mammogram, but then they said I would need the additional ultrasound—and a doctor would be coming in to talk with me. What’s this?
While getting the painless ultrasound I could see that there was something that looked suspicious on the image screen. I watched and heard the camera searching and clicking images, and clicking and clicking. In comes the doctor, nationally renown and one of the heads of radiology and imaging in that medical breast center. He viewed the screen and had a very foreboding look on his face was worried about a greater concern—and he was afraid it wasn’t good news. I said okay, on a scale of one to ten, how bad is it? (I can’t believe I had to nerve to ask.) He said “9.” Fuuuucccck. That’s when my mind drifted into a sort of surreal/dream state. He said until they do biopsies he couldn’t tell me 100% that it was advanced breast cancer, but he said he’d seen hundreds of images like mine and he was 95% sure it was advanced cancer and, in fact, he would be “shocked” if it wasn’t.
So I’m like—okay then. This expert in the industry just told me I have advanced breast cancer. He said he doesn’t usually give so much information to a patient so soon, but he saw I wasn’t living in the area and said I needed to decide what city I wanted to have treatment, and I would definitely need treatment - quickly. Mastectomy? Yep. Chemo and radiation? Probably. I said I needed to take care of some things and he advised me to take no more than 2-3 weeks to “get my ducks in a row.” What ducks? How many ducks and how long was this row?
He said he didn’t know if it had spread to lymph nodes, one looked suspicious on the ultrasound, but the biopsies and surgeries would reveal more about the stage of breast cancer. He then said my cancer has been growing probably 3-5 years. Damn you, Roger! Surprisingly, he stayed and talked with me for over an hour even though the center had closed and he stressed this was not a death sentence, but added 20 years ago he would have told me not to read any long novels. (This guy!) He added new medical advances keep women alive for many years. Too late. My mind had already jumped to the worst—I’d be dead in three months. Like a brick to the head.
Fast forward to mid-October, two months and 18 appointments later with twice as many procedures including four biopsies, several MRIs, four CTs, 2 chest X-rays and lots of lab work... things look a lot better. The biopsies showed that although my cancer was advanced and invasive, it was slow-moving and hormone receptive and there are drugs that can subdue, even shrink the tumors before surgery, so I opted to go one called an AI, and I put my double mastectomy off until the beginning of the year which my oncologist, primary care provider and surgeon said I could do, but for not much longer. I feel unfairly blessed. So many women who have the more aggressive cancer have to go right into surgery, radiation and chemo - I have some time to research what I want to do and have an incredible cancer team to help me make those decisions. And I get to let love ones know how loved they are. Not everyone gets time to do these things.
The wild part is I feel really good physically, mentally and spiritually, aside from some normal aches and pains.
And I believe without a doubt that there is more to our existence than this life. Not so sure about where we go after, but my faith is strong knowing there is a higher power. I choose to call that higher power God, and I have experienced miracles in my life that prove it so for me. Regardless of religion, I can’t imagine going through something like this without my faith.
So I opted to to enjoy my very favorite time of year with family and friends while I’m still feeling good. Surgery could take eight to ten weeks of recovery and then decisions will be made as to whether and how soon I might need radiation and/or chemo. The type of reconstructive surgery I plan to have, which uses my own tissue, will come a couple months later, possibly a year later depending on post-op pathology reports and recommendations. By the way, new laws require insurance to pay for breast reconstruction after mastectomies.
So I’m taking this time to simplify my life and I needed to do that anyway. Thankfully, I have no regrets, no debts and plenty of acceptance. I didn’t know my own strength.
So why am I posting this here? For the three reasons:
First and foremost, I want to encourage women, no matter the age, to do breast self-exams at least once a month and report anything that feels/looks suspicious. After my ultra-sound, I felt for the lump and it was definitely there. Also, start getting mammograms after 40, unless cancer is in your family, and then start much earlier. If your insurance won’t cover your mammogram 100% (and by law the should) there are places you can get them free and/for around $50 (That’s the cost of a dinner and movie.) Fight the insurance later—get the mammogram now. Don’t let that fee keep you from doing something that can save/prolong your life. Even with advanced medicine and technology, you can be cured and live decades. And if you are diagnosed without insurance and/or have heavy financial burdens, there are SO many resources, so many kind,, compassionate, generous, informative and knowledgeable people who will be able to help and guide you. You’d be amazed.
Second, I hope to encourage more folks to fight even harder to protect the healthcare we do have. We cannot go back to no protection for preexisting illnesses and lifetime caps. Before Obamacare/ACA, this diagnosis would have bankrupted others and me. Many young people never knew what that was like and the incredible fear that comes with having no insurance. I have insurance now, but I went 10 years without insurance due to a pre-existing illness in the late 90s and early 2000s. No legitimate insurance company would take me. Not one. I paid full price for medications, doctor’s appointments, and some emergency care until my healthy savings account was depleted. I couldn’t work and I became thousands and thousands in debt. I almost died a couple times by not going to the ER (Emergency Room) when my throat began to close due to my other condition. I would use my pricey Epi-pen and pray that it would work and open my air passages, because I knew going to ER would cause me to lose what little assets I had left - a small house and a car. I was a single mom and didn’t want leave my daughter without a home. I forgot that risking my life might have caused me to leave my daughter without a mother. Life without insurance and the lack of universal healthcare, in a country this rich and powerful, is one of America’s most shameful, cruel and wicked human atrocities. People most definitely die because they don’t have the money for preventative care and/or the medical care after disease and illness have set in.
May we never give up our fight for healthcare. Most Congress members are millionaires and they and their families are medically covered either way so many just don’t “get it,” don’t care enough or don’t care at all. And too many Americans have no idea what it’s like not to have insurance/medical care and they don’t want to pay a little more in premiums so that millions of others can afford healthcare. We have a soulless and dangerous man in the Oval Office and some pretty heartless and complicit GOP leaders after a corrupted election. These despicable human beings actually passed a horrific healthcare plan in the House and continue to try again and again destroy the strides made with ACA/Obamacare. They continue to fail in the quest due to a country full of resisters taking action, activist groups who keep people in formed, the Democratic Congress and a few good Republicans. I often remind myself that it’s “we the people” who are in control and must continue to protest the wrong via marches, rallies, phone calls... and we will win this. We must never go backwards in healthcare—only forward.
Third and lastly, this cancer has taught me to see this world with different eyes. I’m calmer and refuse to give Trump my energy and joy on a daily basis as I have been. I’m learning to love harder, and then love some more, forgive deeper and forgive some more, and give without agenda—and then give some more. But mostly, I will stand up for the rights and welfare of others however and whenever I can, and through writing hopefully be a voice for those who cannot speak, and fight for those who cannot fight. I don’t expect to be remembered for anything great and really, when you think of it, will it matter to me or any of us once we’re gone? But while I'm here and I could be here for a LONG time, I want to be known for acting with strength, not weakness and coming from love not fear.
So please don’t feel sorry for me, or pity me, or hide from me. I’m good. :) I’ve heard that some consider cancer to be a taboo subject and that is why some don’t tell their friends and extended family. If true, I hope this post will help attenuate that kind of ignorance by society and allow more women and men to share their journeys. If you have questions you’d like to ask me privately, don’t be afraid to message me.
I am in a better person by this. I get to realize how great my life has been with all the good, bad, crazy, fulfilling and amazing go-rounds. I’ve done pretty much everything I’ve always wanted to do and how many people can say that? And my life is far from over so I can still do a few of those fun things like a stand-up comedy routine (pity that audience), write a short book, go see Stevie Wonder live, paint more… the things I’ve not gotten around to doing. But if I don’t get around to them, I won’t miss them. It’s more about the time I have with my daughter, siblings, loved ones and my precious mother who’s not sure who I am sometimes, but always happy to see me - as I am her. What a gift. (And of course she doesn’t need to know.)
Oh, and one other thing. You need not feel the need to say something like, “You’re going to beat this! You’re going win the battle with cancer,” unless saying it makes you feel better. I don’t think we, by ourselves, can beat a biological disease. But we can choose our treatment(s) and we can choose how we’re going to live our lives from here on out. Nobody has ever lost a battle to cancer. Those who die from cancer are not losers. They are heroes that triumphed every day. And when you think about it—right now is all any of us have. For me, I intend to make the best of it.