“Your breast cancer has metastasized to your bones and to your liver.”
How did I get here?
I noticed some fibrous stuff going on in my breast for 6 months. 3 months later, I felt a pea-sized lump. 3 months after that, there was an indentation. The indentation indicated cancer from what I had read (because I was reading a lot at this point). However, I still did not get the necessary primary care physician (PCP) for a mammogram referral until I was forced to by . . .
…pain in my right kidney and an episode of severe fatigue before Thanksgiving 2019. I went to urgent care. A sample test revealed red blood cells in my urine, and I was given a referral to a PCP.
Why don’t I want to go to a PCP? I don’t have the most healthy habits, and quite frankly, I don’t want anyone to tell me to change them. But fine, I’ll go to the recommended PCP and, while I’m there, I’ll ask her about the pea-sized lump in my left breast and the indentation. Time to face that music.
I knew I most likely had breast cancer. I didn’t think it was anything more than one lump (in one breast), Stage 1 for sure, but even so, I’d probably need the full bore of treatment – surgery, chemo, radiation. My new PCP (who turned out to be AWESOME) sent me for mammograms and ultrasounds. But then the mamo and ultrasound folks were looking at my supposedly healthy right breast a second time and were spending a whole bunch of time in my lymph nodes. Yeah, I’ll definitely need the full bore of treatment. No use pretending this could be anything other than cancer.
A flurry of testing and biopsies came next. The sped-up version looked like this:
My PCP checked out the test results and thought it was possible Stage 2. I met with a surgeon who said Stage 3. Cancer in each breast and one lymph node. I had a CT and bone scan and met with an oncologist. My cancer had metastasized. Oh!
Stage 4. It’s “treatable, but not curable.”
That’s a progression of this story I did not imagine. And I imagined a lot. Like what choices would I make regarding mastectomies? How would I handle chemo? What would I do about my hair?
All of that is off the table. I will have endocrine therapy to halt or shrink my many, many tumors.
So, I will die of this, more likely than not. And I don’t think I will be 80 when it happens. But I might be 65 (I’m 60 now). I had planned on retiring at 62 with a pension, 401k, social security, IRA. Hmmm, can I retire this year? Maybe. Four hours after I had gotten the diagnosis, I’d already discussed this retiring idea with my husband and sister because they are my rocks and follow my every thought and find all the positives, but they are also realistic.
My boss is a two-time cancer survivor. He has always joked that I can never retire because of how much he relies on me. I can’t even tell you all the stress he is currently dealing with, and yet he managed to find the room to help me figure this out. We have worked together for over 20 years and have always maintained a strong professional and personal relationship that is invaluable to me.
When I presumed I was Stage 3, I re-read Erin Myers’ blog, The View from the 21st Floor, for the second time, and I re-read Rob McLean’s addendum to her blog about the last weeks of Erin’s life for the fourth time. Rob is a treasured colleague and friend. I also worked with his wife, Erin. I went back to her blog because I wanted to read about someone’s experience with chemo. In the process, I was reminded that she had colon cancer with liver mets, and she died in less than a year at 41.
After my oncologist delivered the news of my diagnosis of metastatic breast cancer, I told her that I re-read a friend’s blog, someone who had died – I didn’t tell her that friend had died within a year… I used to be an actress, and when dealing with an emotional scene, the less you cry, the more the audience will. I guess by me not crying, my audience – the oncologist who had to tell me that I was incurable – cried for me. If I told my oncologist that Erin died within a year, that might have been too hard for her to bear. She was already crying. I didn’t want to make things hard for my oncologist.
Is that weird?
Things are very weird in the cancer world. Doctors and nurses seem so worried for me. I’m all, have you met me? And then I wonder about me. Am I not really dealing with this? Am I in denial and shock that I might have a few years to live? Am I a robot for automatically starting to consider how to retire earlier and how to make sure that Steve has enough money and insurance to live on for what might be decades to come?
Am I weird for thinking a year or five years or ten will be enough?
When my primary care doctor, the one who really examined me at the beginning of this journey, expressed her very deep concern about my palpable breast lump, she said, “How are you dealing with this? I would be in a puddle.” Crickets from me. Then she said, “But you probably knew it was cancer, didn’t you?” Yes, I did. I said, “I’ve had so many friends die of cancer or AIDS or from having a heart attack while walking across the street or because they got the flu with no insurance. At a certain point, it’s not ‘why me?’ It’s, ‘why not me?’ She was silent. Eerily silent.
It doesn’t only happen to other people. It happens to you.
I am in touch with many friends who’ve known me since I was a child or a teen or a twenty-something. All of them will tell you I have already lived a very full life, even those who spent only a year or two with me “back in the day.” But, at the same time, after receiving this seriously fucking bad news, I thought about living another full life. I upped my Vitamin D tablets, stopped drinking so much coffee, started weighing myself, cut down my alcohol consumption by 90%, increased my hydration, boosted my exercise by 50%, and changed my eating habits quite drastically. It was surprisingly easy to do all of this. None of these changes may affect my chances, but they will make my life better during these early years.
I told my longtime friend, Coby Goss, about my diagnosis. I was having a hard time figuring out how to tell people. I knew he would be a good vessel to get the word out slowly and casually. He joked that I probably wouldn’t want the word “warrior” to be involved. He was right. He does know me. It’s comforting to know that people know you. I love the word “warrior” and how it can empower people who are struggling with grief or pain, but I also agree with those who want to take the war imagery out of their experience with cancer.
But, if I’m not a warrior, then what am I? The Tumor Ignorer? The woman who thought one little lump was something that could wait for months and would be taken care of by surgery, chemo, and radiation. I read articles about so many things a lump could be that was not cancer. I clung to those things, even after I knew my lump could be nothing but cancer. Yes, I am the Tumor Ignorer. It’s my superpower.
Am I ashamed that certain unhealthy habits may have contributed to this? No. I am relieved that no one thing is the cause. Not even genetics – I had a full work-up. And even though I was forced to address it, there is no way of knowing if I had taken care of it sooner, my outcome would be different. Not a single medical professional I’ve met with has questioned why I didn’t come in sooner. They were probably trained not to blame the patient. Good call, Loyola!
I don’t know how I would feel if I knew there was something I did to make this happen. Like smoking can be directly linked to lung cancer? I like to think I would accept my choices and live with them. I’d like to believe I wouldn’t regret how I’ve lived my life.
I’m on Ibrance and Letrozole, and I am not experiencing any side effects. My blood pressure is now excellent, I’ve lost 28 pounds. I will retire in September – a year earlier than planned. My investments are in the toilet, but we won’t need them until the market bounces back. All manner of adventuresome plans my sister made for me are on hold because of the pandemic. But Steve and I have made the best of our quarantine. We have been on an organization and purging spree. He shops and cooks and cooks and I eat well.
But still . . . I am very sick. I have an advanced and unpredictable disease. It’s hard for me to get that because I feel great. I’ll get it in due time, like many of my dear friends and relatives have. It happened to them. It’s happening to me. So maybe I’ll be crushing you at shuffleboard in the nursing home 20 years hence, or maybe you’ll be remembering me with Steve Rose* over pancakes in three years. Somewhere in between would be just fine. Here’s hoping.
*If you’ve worked in Chicago theatre, you know who Steve Rose is.