For nearly 8 years, I had check-ups, mostly blood work, very few scans. Since I had a bilateral mastectomy months after I had my first ever mammogram, I never needed one ever again, a mammogram that is. That’s right. Throughout everything I’ve been through with breast cancer, I’ve only ever had one mammogram. But know that that ONE, was the bitch of all mammograms. So, yeah, I relish in the fact that I never have to get one ever again. (One of the few pluses through all of this.)
And I admit, throughout those nearly eight years, I sometimes felt a bit invincible. I would make uncomfortable jokes, as I normally do, and say things like, "I already had cancer," when I was near asbestos removal. I did say uncomfortable, right?
Let’s go back to that feeling of invincible. I had gone through over a year and a half of hell, and came out thriving. I was able to get into the best shape of my life since I was in college. Life was good. I have always been a hard worker, so the pain in my back over the past couple of years was shrugged off as just picking up more than my fair share. But when it officially came back, and I started blogging again, I actually found a draft blog post from 2017 titled, THE PAIN IN MY BACK, that I never completed. Seriously.
The numbers that I feel you never quite hear enough are:
1 in 8 women get breast cancer
30% of that 1 in 8 will have a recurrence
By recurrence, it means that it will come back either in the same place or somewhere else. When it 'jumps' to another location, aka not in the breast, that's when it has metastasized, otherwise known as stage 4.
When my oncologist called that day last April, at the height of the pandemic in New York City, I was still convinced that it was nothing but shingles caught well before the blisters had formed. Because, you know, I'm invincible, right?
Metastatic cancer by definition is cancer cells that have broken from the original cancer tumor (so in my case it was breast cancer, and in that bad right breast there were 15 tumors) and the broken off part, so to speak, traveled through the blood or lymphatic system (in my case, 8 of the 24 lymph nodes tested were cancerous) and spread to other parts of the body – the liver, the brain, the lungs and, in my case, the bones, specifically the spine. That friggin' bone biopsy proved that the cancer cells in the T 8, 9, 10 and 12 sections of my spine were the same cancerous cells from my breast. Not a new cancer, but cells from the originally diagnosed cancer. Science is crazy right? I mean, somehow they knew that the cells in my spine were the same as those that were in my breast? What kind of messed up shit is that!
Breast cancer always has the possibility of coming back months or even years, in my case 8 years later. Remember, there’s a 30% chance of it coming back. So as you can imagine, the fear has always been there. With every ache and pain, I worried.
And when they say the words, “Stage 4 cancer,” what comes to mind? It’s ok, you can go ahead and say it – death, dying, end of life – right? Don’t feel bad. That’s exactly what I thought, and I wake every morning fighting to get that out of my head.
But it’s not a death sentence. It’s not. People live for years with stage 4 cancer. It’s really all about the perspective. It’s labeled STAGE 4 because it has metastasized. No matter where it has traveled to, no matter how bad – it’s stage 4. Want some more perspective?
Flashback – I was Stage 3 (actually stage 3b), because my cancer traveled to my lymph nodes. Six years later, when I went with my BFF to her post-surgery appointment with her doctor after her surgery for colon rectal cancer, the doctor was great. All positive and upbeat. “We got it all. We really did. We did this, we did that.” (ok, I’m improvising this a bit) And then he casually said, “It was nearly entering one lymph node, so you’re stage 3 and you'll need chemo.”
I felt my BFF tense up. I stopped the doctor and asked, “Sorry, but can we go back a bit? How many lymph nodes did you test?”
“Ten,” he replied.
“And of the ten, you’re saying only 1 was positive?”
“That’s correct,” he confirmed.
I turned to her, “That’s 10%. I had 24 removed and tested and 8 were positive. That’s 30% and I was told that even THAT was good.”
Back to the doc, "And you're saying chemo, because of the 1 lymph node, correct?"
"That's correct," he again confirmed.
So the need to stay positive, you see why, right? Many people live with metastatic cancer for years. I just have to find out what my ‘new normal’ is. A term that each and everyone one of you out there can NOW understand given our current health climate.
And I admit. I dove deep into Dr. Google, and it wasn’t good. I mean, it really was not good. No matter how much I advise people NOT to do the deep dark Dr. Google dive, I did it. Everything I read really gave the same uncertainty. Not enough data could be collected to truly understand the number of women living with metastatic breast cancer, and the longest lifespan was giving 6-10 years. And I lived in that dark space for several weeks. I can honestly say that it's a place I don't want to ever go back to.
At my last check-up, my oncologist and I went through all of the same things, and then I asked her to go through my medicines with me again, just so that with a clear head I could be reminded of each one and their cross effects with the other.
The Lupron injection is supposed to shut down my ovaries, thus throwing me into menopause and stopping the production of estrogen. Whereas Tamoxifen blocks estrogen in breast cancer cells, Anastrozole blocks it in the muscles and tissues. The targeted therapy isn’t a chemo pill exactly. Whereas chemo kills cancer cells and good cells, the targeted therapy goes directly to the cancer cells. There are three different types. One is a cycle drug, which you’re on for 21 days and off for 7, and also lowers your white blood cell count tremendously. Another that can have a bad affect on your heart. And the one I’m on, the Abemeciclib, or Verzenio, which can cause diarrhea, has made me make drastic changes my diet. Basically it goes after a certain protein that is found in my cancer cells. It’s found in other cells, but it’s predominantly found in my cancer cells. And the Zometa, bone drip, enhances my bones to prevent any fracture.
When I asked her about the data, she wholeheartedly agreed that in fact the science and the research have far surpassed the data collecting. That nine years ago she would have easily given me 3-5 years. Now, she’d easily give me 10+ years. And that in another 3 or so years, she could possibly give me another 10+ years.
I admit, I'm still processing what it all means. Because just when I thought I spoke breast cancer, I'm forced to learn the language even more. So I go about living each day. Feeling really great actually. Biking, sometimes over 22 miles in a day, has been the best activity for me, next to gardening. I stay away from lifting things. I actually have nightmares about standing in front of a folding table and knowing that it needs to move to the other side of the room, and I can’t move it. Sad really. But that’s my new normal. Living life to the fullest while not picking up heavy shit. Facing the fact that I’m not invincible. Creating the best quality of life for myself and my family in the time that we have together. While maintaining hope. And when you say it like that, it doesn’t sound all that bad, right?