To Boob or Not To Boob?
By Kathy Reschini Sweeney, who has been puzzling on the question
I have breast cancer. I can say that now without cringing. The cringy part - what to do about it - has kept me in a state of consternation since the diagnosis in May.
I have invasive lobular carcinoma. It does not form tumors with clean edges. It hides. It spreads like a river delta running over big rocks - no discernible pattern. It does not "image well" which means, no shit - they can't see it on most tests, including the new 3D Mammograms. What showed up as an 8mm tumor ended up exceeding 5.6 CM and they still didn't get it all. It is, as my wonderful surgeon said "Our Nemesis." I know from Nemeses. They can't be trusted - they require the big guns. So I got them all out.
I read studies; I researched; I spoke with Survivor Warriors and Fighting Warriors and medical experts of all kinds. I got some information about survival and infection rates and other important information in ways both direct and sneaky. My cancer is sneaky so I figured it was fair.
I had surgery in June - a partial mastectomy with sentinel node biopsies. Lymph nodes were clean. The margins were not. What that means is that there is more cancer in there - at least at the edges of where the existing cancer was removed. How do they get close but not get it all? I am quoting the Docs: "Pure Luck". That's right. They can't SEE the cancer in there. They can't TRACK the cancer in there. They just hack out part of your boob and hope for the best. I know that sounds terrible but it's the truth and I am telling it. THEY DO NOT KNOW. This is perhaps the toughest thing about The CANcer (you need to whisper it that way when you say it ;)). You have to accept that you will never know what caused it. You will never know why it picked you. You will never know where else it is lurking. For someone like me, who counts on finding answers and ways to FIX things via research, clinical thinking and brainpower, this is the ultimate nightmare scenario.
But at least I knew more about my enemy, so I set about learning as much as I could, given the meta limitations.
I had genetic testing done - my grove of family trees is full of cancer branches. But - HURRAY - I don't have either of the BRCA genes. Neither does one of my sisters - which is kickass news for the rest of the family including our daughters.
I had tests - lots of tests. I volunteered for every research project and clinical trial in the tri-state area - and I signed a consent for all of them back in May. One called. I ended up in a clinical trial for breast imaging - they are trying to find a better (and less expensive and less terrifying) option than MRIs, which tend to produce false positives. MRIs, in case you've never had the pleasure, are huge machines with a hole down the center - like a round coffin, closed and without the cushy lining. Okay - maybe that's a bit much - how about a water slide tube, except you can't move and there is nothing fun about it. Once they shove you in there, they proceed to bombard you with every irritating sound you can imagine. The sounds change, you can't anticipate what will come next, and if they had asked me to give up state secrets to make it stop, I would have.
The new technology is better - there is a new application of the 3-D mammogram imaging called contrast enhanced breast tomosynthesis. They inject a dye so they can better discern how different cells react. I also did a study using a machine designed for nuclear brain scans and bone scans. Fascinating - I was injected with radioactive isotopes designed specifically to react with breast tissue and then did extended mammogram images (10 minutes per image) from different angles.
The results came back: more cancer in my right breast. Nothing on the left. Okay. Knowledge is power.
In case you don't know me and haven't been following this, let me insert at this point that I went into this wanted a bi-lateral mastectomy. Because when there is something inside you trying to kill you, you want it OUT. GONE. OBLITERATED. Moderation? Screw that. Get that shit OUT.
My surgeon, Dr. Bonaventura, was patient with me. She told me from the beginning she would respect my decision. Then she showed me the studies, and the test results and the long-term survival rates. Over the course of the next couple of months, I came to agree with her motto: there is no reason to remove healthy tissue. One of the ways I finally got there was the grim realization that boobs are not just for feeding babies and sexing. They're not accessories that you can just pop off when you don't want them any more. They are part of your body and they contain lots of things that support the systematic operation of the whole shebang. In other words - they are not legos that can be removed and replaced with no problem.
Not everyone is lucky enough to have the options I have. Some of my dear ones really had no choice - if the cancer is a certain type, or has spread, or if your genetic tests come back positive, it's a no brainer - everything has got to go in order to prolong your life.
Does it infuriate me that - in all the years we've spent allegedly focused on breast cancer research that butchering ourselves is still the only option in some cases? You bet your ass it does. And the other treatment option - after ALL THIS TIME? Still poison (aka chemotherapy) - for some people that's worse than the butchering. But that is a blog for another day.
I could have more tissue taken from my right boob in an effort to get 'clean margins' - which means no traces of cancer outside the area they cut out. I ONLY have this option because I have big boobs. But then I would be looking at living through this every year because I KNOW -from the scans and the biology of this type of cancer - that there is more in there. We just don't know where it is yet.
So I am having a mastectomy on Tuesday morning. I am having it at the same surgical center as all of my other procedures - on an out-patient basis. My surgeon and anesthesiologist (who have been with me since this all started back in 2012) agreed that I am healthy and strong enough to try it this way. If there are complications, they will transport me to Magee. But I don't want to spend any more time in the hospital than I have to. Which is also another blog - or if you happen to know a nurse, just ask them. I will have a tube draining stuff post-op, which for some reason scares me more than anything. Another blog.
I keep looking at my boobs. They are in good shape, considering. Even the reconstructive surgeon was impressed. Told them I used to be a stripper. Which is NOT true. I cannot deny, however, any number of wet t-shirt victories I may have experienced.
They are real, and I have to admit, back in the day, they were, in fact, spectacular.
And now one of them has to go. This makes me very sad. Which is odd - because it's just a boob. It's not an eye or a brain or any of the things that operate the five senses or my ability to walk or talk or write or hit people in the face if necessary. Plus, I still have one that works. The right one doesn't work any more. And I am told by other Warriors that it probably never will. The previous surgery wrecked up the muscles and the nerves in there. So really - if it doesn't work, and it already resembles a road map of scars, what's the big whoop?
I don't know. But it's a whoop. It's an enraging, crying, cursing whoop that makes me unfit for human company right now. In a couple of days, the girls are going to be split up for good. But me? I will still be me. I am a better me than at any other point in my life. I endured a lot to stay me. I enjoyed a lot and laughed a lot and fought a lot and fixed a lot and gave a lot and took a lot from my family and friends to stay me.
When I was in my 20s, I was physically beautiful. If you didn't know me then, ask for a photo. I didn't really understand the potential of being physically beautiful - which is just as well - because that is some shallow stuff, using looks to get what you want. But in my 20s, I was a mess inside. Lots of reasons - nature, nurture, criminals, weaknesses - a zillion reasons.
Now, I am not beautiful on the outside. I am fat and scarred up and my hair is no longer long and glamorous - I have to wear glasses which I hate, I wear crocs and big shirts instead of FMPs and corsets and I haven't worn make up in a decade. But ME - inside me - where the important things are - compassion and love and fortitude and gratitude and sympathy and empathy and the ability to give? By the Grace of God, I am stunning. I am a beacon and a source of great love.
And no damn cancer is going to take ANY of that from ME.
I need to thank everyone for all of their prayers and support and implore you to keep it coming. Because without all of you, I would be in the fetal position under my desk. ;) Especially to other Warriors out there - whether you are in the Fight, or years out - remember - we fight together; we win together.
Someone did ask for photos and I tried to put them in a comment but it didn't work. So here is me circa 1980-1988 - I don't have very many on my computer but this should give you the general idea! :)