I never really thought it would happen to me – breast cancer that is. I guess no one really does though. Even after I had genetic testing, the counselor told me that despite my negative results for any known breast cancer related mutations and lack of family history that it might be hard to accept that I’ll likely never know how or why I got breast cancer. Weirder still – that’s actually the case for 80% of those diagnosed with breast cancer. I was the norm and not the exception – who knew?
Wow – what a surreal experience this past (almost) year has been for me. It was March 4th when I innocently trekked up to my mammogram appointment, just knowing that fluid filled cyst they had identified 6 months earlier was what felt funky. When the radiologist said “I see something” I just sat straight up and screamed for what feels like an eternity, but really I have no idea because I was in shock. Only now can I feel bad for what the sweet older ladies in the waiting room must have felt!
The next Monday, I had a biopsy, and Tuesday, March 8th is when I received the phone call confirming I had breast cancer. They had biopsied 2 small spots, so when I met my breast surgeon, she recommended mastectomy because they were far enough apart that lumpectomy was not an option. However, based on imaging and biopsy, she estimated stage 1, and the strong possibility I would not need chemotherapy. It was still crazy and scary, but doable.
Surgery was April 6th, 2 days after my 49th birthday. I had 2 surgeons – first my breast surgeon did the double mastectomy (my choice – I value symmetry), then my plastic surgeon placed expanders (kind of like deflated balloons) in my remaining tissue. Physically, it was not nearly as painful as I had imagined. Even the next morning when my plastic surgeon came to examine me, ripped off the bandages and admired his work (he’s incredibly talented, compassionate, and has a sense of humor), it didn’t destroy me to look in the mirror.
But then the bad news started lumping up, and just wouldn’t stop. Tom had to tell me they had tested a lymph node that was positive for cancer, so they had to remove all lymph nodes on the right side to send for testing. My surgeon came by the next day and said 1 additional lymph node had tested positive plus what we thought had been 2 small tumors in my right breast was actually 1 large tumor that measured 10 cm, and I was now dealing with stage 3A. She also said I would need a PET scan to rule out spread to other areas of my body before meeting with an oncologist, but assured me I would be facing chemotherapy and radiation.
Wham! I was weak physically from surgery, but that was too much to take. Fear can fuel action but can also just take over, and I genuinely can’t even remember much about that time between learning I had a tumor the size of a baseball in my right breast that somehow evaded my very punctual mammograms every year, and getting the results of my PET scan which revealed no spread.
Then, I got to meet my oncologist. Lots of medical folk enjoy using sports analogies, and while new cancer patients have what feels like an unending amount of appointments and specialists, your oncologist is like your quarterback. You’ll be with him or her for the long haul, and he or she is who guides your treatment path.
It may not be shocking for you to hear that I struggled with this appointment. He’s the guy who has to talk percentages, lay out treatment options and give you his opinion about how to proceed. My numbers were kind of ugly, and my chance of recurrence higher because of the size of my tumor and the lymph node spread. However, he also told me I was wise to have gone the route of double mastectomy because the type of cancer I had (mostly lobular) is very sneaky, hides easily, and can often appear in the opposite breast.
So, I learned that I’d need 5 months of chemotherapy, starting with the “red devil” (he didn’t say that, but I knew it from the internet boards), then 6 weeks of radiation, followed by 10 years of hormone medication because my tumors were 99% estrogen fueled.
Fast forward to December – I had completed chemo, and was just finishing my daily radiation sessions with “Trilogy 1/ Trilogy 2” and deciding to add 1 more surgeon to my medical posse. Having learned that my particular type of cancer responds better to a class of drugs call Aromatase Inhibitors, but in order to take AI’s, one must be post-menopausal I made the choice to surgically remove my ovaries and fast track my trek to menopause from several years to about 2 hours. O.M.G.
Note: while meeting with oncologist, plastic surgeon, new Ob/Gyn oncologist, Radiation Oncologist, etc during this time, I am grateful anyone took me seriously at all with my shiny bald head now littered with little patches of peach fuzz here and there, except for right above the ears, where hair was almost an inch with the most ridiculous curl pattern imaginable. Humbling doesn’t even scratch the surface here, folks!
So, January my ovaries exited stage left, and February 1st, I began taking an Aromatase Inhibitor called Letrozole, which sort of rids the body of any remaining estrogen but not without it’s own interesting side effects. So, it’s been a fascinating month at our house with 2 teenage boys in the throes of puberty and mom in instant menopause. There is some emotional instability (shocking, I know!), a lot of crying (not all Tom), and difficulty managing everyday life situations without the aid of estrogen. But, while I thought estrogen had been my friend all these years, it was actually trying to kill me. That’s not the kind of friend anyone wants around – so I kicked it to the curb. Even though it was the right thing to do, the side effects are unpleasant. AI’s are helpful preventing reoccurrence, but I feel like overnight I have arthritis in every bone of my body, and movement is difficult. This is actually likely helpful as my emotions are whacked out, and I am unable to truly chase anyone yelling inappropriate words or phrases even if those thoughts are rampant in my thinking bubble. Not to mention I will need to have my rock-hard breast expanders which I call “foobs” in until June (because of radiation), before I can swap to something slightly more comfortable, like silicone. It’s awkward as heck to try to maneuver through a crowd realizing you are likely bruising people as you squish by!
So now what?
I remember in the early days, right after diagnosis, that I thought I’d be able to view this experience from the other side with some sort of wisdom and clarity. The short answer to that would be nope – not even close. The longer answer which I’ll have to dive into another day because it’s just too difficult to process most of the time is that there is no “after” cancer, and there is no going back to the life I had before. The betrayal of your own body is a tough one to process – and at least for me, the emotional journey of cancer and learning to manage the fear of recurrence is overwhelming at times. I try to find joy (without estrogen) in the day to day, with limited energy, chemo brain (yes, it’s a real thing) and ridiculous hair, but I don’t feel like who I always thought I was, and that’s really hard for me right now.
It’s safe to say that I’m struggling to find even little bits of the old me that are recognizable and comfortable. I’m kind of in this weird limbo – post cancer treatment, and figuring out what I value and how I can make some sort of difference in my own little corner of the world, but not quite knowing how. Preferably it will involve colors beyond just pink.
Mixing cancer and autism has made for some unique experiences. At face value, they seem kind of remarkably different, and in so many ways they are. But having gone through the experience of your children being diagnosed with something that is life altering, with outcomes that are vague yet filled with possibility and for which you must learn to build a comprehensive “village” has at moments felt vaguely familiar. And just like autism is not something that impacts an individual, but a whole family – the same goes for cancer. I’m the one with rock hard “foobs” but my people are impacted by my inability to be as active in their lives as I once was. Tom & I struggle to embrace our new normal, and stumble about trying to take on roles that are necessary to fill, but don’t always play to our unique strengths. Harmony is lacking, and we’re just not finding our groove yet. No matter what, we’re in this craziness together.
Here’s the really hard part – autism/ADHD doesn’t give a rip about cancer. Even with the most awesome village around, the inevitable ups and downs will happen. The difference is that when the boys have difficulty at school, and we are trying to collaborate, I don’t feel the luxury of time to get things right for them like I once may have. I’m not as patient, because I can’t be – I can’t risk it. I can’t count on my tomorrows, and while I do realize that is ultimately true for all of us, it’s just true in a more “in your face” way to me. That is what keeps me up at night as I contemplate whether we’re doing our best for them.
So, I’m bolder, I’m not as cool about a “let’s see how this goes” approach. Middle/high school is just weird – and my compassion for those who work amongst the sea of hormones in those buildings is infinite. But while there is much about my weird life after cancer I’m confused about – advocating for my kids is not one of them. And because the kids are dealing with my having cancer in their own unique ways, it’s been a pretty tough year for them in school. Lacking estrogen has not made school advocacy go as smoothly as we’d wish, but I believe we will muddle through this and learn from our experiences. After all, the girl (who happens to be having a fabulous school year) is not far behind. We need to be ready!
There you have it. I can hardly believe a year has nearly passed by, and life marches on in so many ways. I’m hitting a new decade, and just days after will undergo another PET scan to see if all my treatment was effective. I won’t lie – it already frightens me, even with my anxiety meds and a lot more exercise. But I am taking to heart what I’m learning from those who have gone before me, and those that are making the most of all their days as they face stage 4 breast cancer – I’m living. I’m occasionally seeing friends, I’m fighting with my kids about homework, I’m brainstorming crazy new ideas with other special needs parents to make our communities even cooler, and I’m planning an adventure with my people.
Last summer, we had to cancel our long planned journey to visit an array of national parks because of my cancer treatment. One of my life long wishes is to see the giant redwoods in CA and to visit Yosemite National Park to admire “El Capitan up close and personal – including randomly shouting the word “nature” just because. After the year we’ve had, Tom and I in a sleep deprived state one night just said (bad word) it, and booked airfare west during spring break. We’re winging it, kind of. Not exactly sure how that week is going to go (we would typically put months of planning into something like this), but without a doubt, it will be an adventure, and I’ll get to experience some life goals with the people I dig most before hitting the big 5-0.
Last year, during one of my darkest moments when I was waiting for the results of my PET scan and numbly pacing around our house, I found my sweet Ada sitting at the table creating art. I sat and chatted with her for a while, and her simple joy made me smile and feel a sense of peace. My little girl reminded me that love trumps fear, and I’m ever grateful to her. After I received the phone call letting me know my PET scan results were clear, I found her completed work of art on the table, and started to cry. The colorful picture now had words across the top – “the world is full of cool stuff” – so I gently tucked it away, knowing it would be something to remember and cherish always.
Ada G, I can’t wait to explore some of that cool stuff with you, your brothers and Hop-a-long next month. No doubt, we’ll do it with our own unique spin – but it is certain to be an adventure!
Peace and love all around . . .