A dear friend and mentor of mine Bill taught me the following;
Things go wrong for 3 reasons; expectation, communication and control.
Well folks, my most recent story includes all three.
From the beginning of my diagnosis I was expecting treatment to occur in 4 more phases; Chemotherapy, Surgery, Radiation, Reconstruction.
A solid plan. Sounds simple, and in essence it is, because I just do as I am told! The original diagnosis of a 14 cm tumour meant that I was initially not eligible for surgery, and we needed chemo to work. It's actually funny because I either wasn't told this in as many words, or we chose not to hear them, but I actually became aware of this fact once my tumour had shrunk to about 7cm after 4 AC treatments (red devil).
It is a blessing beyond imagination that chemotherapy worked for me. It never crossed my mind that it wouldn't- call me confident or ignorant. But after recently losing a dear friend, Jean, as she didn't have a positive response, I am thankful beyond words.
It's actually greater than that though. There are days I have survivor guilt that I made it and she didn't despite being diagnosed around the same time. Her cancer was different, and it is not my place to disclose information beyond what I have already said, but I am sharing because it explains why it makes me mad, sad, and humbled. She would kick my ass to Christmas for even letting an ounce of guilt creep in, but how can it not? She was here and now she is gone.
I said my treatment came in 4 phases, and in addition to chemo I am also on the right side of surgery. The details of this I share in the posts The Calm Before the Storm, Bye Bye Bad Boobs and Déjà vu and here we go again. It was a wild ride as I underwent a bi-lateral (double) mastectomy with all of my lymph nodes removed on the right... followed by an emergency surgery for skin necrosis.
Originally, I was hoping to have a DIEP process, a tissue and skin transfer from my belly to rebuild my boobs. I would have lived flat (which is actually concave) for a year and then undergone the significant surgery (an approximately 8-12 week recovery). Dr. Kathryn Sawa was one of the first to perform it in this region... and she is incredible. (Read more about it and her here)
But again my expectations weren't met when she broke the news to me I wasn't a candidate for the surgery. Why? The amount of tissue I had to remove versus the amount of tissue I had available. Simply put, there was only enough to fill the holes.
I had always said that I didn't want implants, and I didn't. That's what I shared with many of you. BUT, I reserve the right to change my mind with new information. We all do. My expectations weren't right, and Dr. Sawa's communication put me in a new place. I became her client, and when her and General Surgeon Dr. McLeod performed my mastectomy they also put skin expanders under the skin.
We have spent the last 4 weeks expediting skin expansion. We fondly refer to this as #buildingbabybarbieboobs! It comes with challenges and opportunities, but I don't regret my decision. Post radiation I will have the expanders switched out for implants...
Izzy: "Mom, how big will your boobs be?"
Me: "I have no idea."
Izzy: "Do you pick them?"
Me: "No, Dr. Sawa does."
Izzy: "I need to speak in her ear!"
This kid is something else, and I look forward to writing about reconstruction in detail (I'm just not ready to do that yet).
We have known for sometime that this was the plan. As I say, if there was one thing Covid taught me, it was to add the word "pivot" to my vocabulary. But, the greatest change came with the pathology results from the detailed examination of my removed boobs and lymph nodes.
In summary, they found 3.5 cm remaining of invasive cancer - gold stars, I would say, from the 14 cms we started with. There was, however, some surprises. 4 of the 14 lymph nodes removed were positive for cancer...expectation maybe one considering the oncologist had always struggled to feel the cancer, see the cancer on ultrasound, and the anticipation was chemo would have kicked it to the curb. The other piece that shocked me is that 12 cm of DCIS remained. DCIS is deemed early stage cancer, non-invasive but presents a higher risk of invasive cancer forming... but I'd already had, have, invasive cancer... how could this be?
Which was further compounded with the last piece of news. The invasive cancer didn't have a clear margin, meaning that there is a high likelihood that when it was removed a little something something was left behind. Breast tissue, unlike the heart or lungs, doesn't have a defined edge. It co-mingles with other tissue, such as fat, and therefore the surgeon will always expect approximately 5% of breast tissue to be left behind- even after a mastectomy.
Now I don't need or want to panic anyone. Radiation will fry it... but it's time to turn up the metaphorical heat.
So what is the new plan? 7 weeks of daily (weekday) radiation, 35 treatments with an expectation of fatigue and some skin burning. There I go again with that word, "expectation". It is a fine balance of being as optimistic as possible while also being as realistic as possible. Radiation is also cumulative, meaning it will be at its worst for me around weeks 8 and 9 (10-14 days after treatment is completed), not 7.
And this is not the only development.
I had always expected to continue with my Zoladex injection, a hormone injection that induces menopause. (Because if cancer wasn't bad enough lets throw me into menopause too!!!! The only benefit is that some of the side effects of other treatment are the same so it's hard to know what is what!) In addition, the discussions with my oncologist had me anticipating Tamoxifen, a drug that reduces the risk of early stage, hormone positive, breast cancer recurrence. BUT, unfortunately not for me... we are bringing out some bigger guns.
Honestly it is all still a little bit of a medical blur, so I'll keep it as straight forward as I can... for the next 5-10 years, I will receive Letrozole. Letrozle reduces estrogen production, where Tamoxifen blocks estrogen receptors. We are kicking estrogen out of the party versus allowing it to hang in a corner.
In addition, once radiation is complete, I will receive two additional drugs- one to prevent cancer heading to my bones and an IV infusion to protect my bones from that drug. This will be a 2-3 year plan.
So why? Why write all of this? Why share it? Partially because it's like therapy for me. It helps me realize it is ok. It helps me to process. It helps others (perhaps) understand what's going on. I expected something different. I had been told something different, and it is once again, very much out of my control. Like always though, I need to end this post with something a little bit funny.
What I didn't share is each of the new drugs has a side effect. Letrozole- bone pain and muscle stiffness. I look like a guy who's milked cows in a tie stall barn for 60 years as I roll out of bed and can barely bend over!
The others... well... after a recent call with the drug company, they asked a few questions and approved to have the drug shipped to my house. Verzinio and a side order of blah, blah, blah. Now, when I think side order, I think garlic mash or twice baked potato at the Keg, but I'm not sure this is what she had in mind.
"I am sorry I didn't catch that," I reply.
"Oh," she says, "you would know that as Imodium!!!"
Data would suggest over 90 percent of people need it... but not to fear my oncologist said most people have it figured out within 3-4 MONTHS!!! So if you call me please know I may be speaking to you from my 'new office!".
Forgive all of the links in this post but there is so much info and I wanted to share some of my go-to resources when trying to understand.
Comments