Well lookie here. I'm back at this again. And this'll come as a surprise to a lot of you, I'm sure. No, I don't have cancer again, thank goodness, but once again, cancer has dramatically impacted my life, and no, not for the better.
A little background. You can see that grateful, joyful post below this one. The one from 2012 where I was about a year out from surgery and feeling really positive. I could work out again. I had energy. I was just back to being a mother, doing all the things. You know I love to do ALL. THE. THINGS.
But soon after, as I really got back to my workouts, I started having issues with shoulder pain. First one side. Then the other. Oftentimes, it'd go into my back and hips - again, switching sides. After trial and error with BPT (Bad Physical Therapy), I found an Awesome Shoulder PT (ASPT) who'd guide me through patching myself up. We thought it was me, being my over-zealous workout-ie self. So ASPT, who's also a strength and conditioning coach, helped me completely re-vamp my weightlifting world to use kettlebells - they're dynamic and self-limiting and would help me, we thought, not keep hurting myself.
But they didn't. So from 2012 to 2018, I was in PT every few months for shoulder and sometimes back and hip issues. Never any rhyme or reason to what was setting me off. I started to get suspicious. I'd NEVER had these particular issues prior to my surgery. What if something about the surgery and my implants were impacting my movement?
And so, in my usual way, I started to dig into medical journals and poke around online for anecdotal stuff and lo and behold . . . shoulder dysfunction due to implant placement under the pecs is A THING. Such a thing that surgeons have recently pioneered techniques to place implants above the pecs. ASPT supported me in this search, agreed that I'd never "presented as a typical shoulder patient," and validated all the anatomical stuff I was finding.
For background: Here's an over-simplified version of how my surgery went down. First, Breast Surgeon removed all the breast tissue in both breasts, leaving the outer flap of skin on both breasts so I essentially had an empty envelope in which to place two smooth saline breast implants. Then Plastic Surgeon entered, and cut each pec muscle at the bottom and slid each implant up underneath the pec so the implant sits between the pec and my chest wall. This is called "post-pec implant placement." PS then sewed me up beautifully to heal. So . . . if you can picture this, all those pec muscles that used to be flat against my ribs are now pushed out to the outside of my "foobs" (fake boobs). The foobs look pretty real. The sinister side of this is that all those pec muscles naturally reach up into and connect with your shoulder architecture. So when they get pushed out by implants, it throws the entire apparatus off. And this, my friends, is what's been happening for the last 8 years.
Back to my timeline: In October, 2018, I started a new kettlebell program and something went COMPLETELY haywire. My shoulder pain in both shoulders was OFF THE CHARTS. On the right side, the pain continued down both the back and front of my torso, involving my ribs, diaphragm, back, and hip. ASPT couldn't make any headway after weeks of trying. I was in such extreme pain that working out was out of the question. I couldn't even dress myself, couldn't sleep, couldn't walk the dog, etc. etc. etc. without extreme pain.
Off to the plastic surgeon I went - the woman who did my initial reconstruction. I wanted to see what options there might be to fix me. I wanted to be active and pain-free. Really, not a lot to ask. In the 10 minutes I sat with her, she told me that: 1) she had never heard of shoulder pain or dysfunction as a result of post-pec implant placement; 2) that she could not re-do my surgery to place my implants above the pecs because my skin is so thin and the risk of failure is too high (valid, could absolutely be true); and 3) she would not remove my implants altogether (an "explant," yep, the opposite of implant is explant) because it would be "an inferior cosmetic result." Wow. If that wasn't a dead-end, then . . . .
And so began months and months of painful breast PT (to break up scar tissue and restore shoulder function) and movement therapy to try to get me pain-free and able to work out. We'd make a little headway, then it'd be back to baseline bad news. Along the way in the last ten months, I've had scares related to bone metastases (thankfully, just a week of harrowing anxiety but no mets), numerous appointments with various MDs, lots of imaging (nothing to see here), spent gagillions of $ (very few breast PTs are covered by insurance, and when they are, they limit themselves to your upper half, even though "it's all connected" thankyouverymuch managed care), and spent a lot of nights, sleepless. Let's also add that I've been introduced to the living hell that is chronic pain.
So here I am at August, 2019. Some things are better than where I was in October - I can get dressed without extreme pain and I can sleep so long as I take a particular drug cocktail. But honestly, I'm worse. Since the beginning of June I've been unable to walk - laid up with what was first thought to be terrible plantar fasciitis, likely caused by my weird gait. Now thought to be a herniated disc. I spend hours on the floor or in my bed . . . . I am now dependent on medication to get even a glimpse of less pain. Though I haven't gone there and refuse to, I tell people, "this is how you get addicted to opioids." Only someone who's experienced chronic pain can understand the desperation it engenders.
The list of "can'ts" is so long, I don't even want to bore you: I can't go to the beach because my foot hurts too much. I can't cook. I can't shop. I can't bike or walk or do yoga. I have to wear running shoes ALL THE TIME. I can't paddleboard. I can't travel. I recently broke down and had my PCP authorize a disabled hang-tag for my car. My Peloton is a pipe dream. I am missing out on my own life and that of my friends and family. I have been taken out of the game. I'm not even benched. I've been told to not even show up.
Why didn't you know about this? It's nothing personal. Not very many people have been let in on the situation. I kept quiet because I have a "thing" about not bothering people with my junk. And I'd get a little better, and then worse again. So I'd have hope that I was pulling out and why bother with all the details? It's also so. damn. borning and awful to be in pain 24/7. I was also busy: Weeks full of doctor and physical therapy appointments. Just getting by and trying every avenue to feel better while also trying to take care of my family. Trying to get better has been my full-time job this year.
I decided in June that I was done. That I needed to explant, and ASAP. I have been consulting with surgeons, trying to find someone who can do this . . . it turns out that taking implants out is FAR more complicated than putting them in. In my situation, there are gray areas around how the procedure should best be performed. There are no doctors at the major Boston teaching hospitals who're are doing it by what's thought to be the "gold standard" method. In fact, it's hard to find a doctor at a major teaching hospital in Boston who's done more than a handful of explants, period. Even the doctors elsewhere, who're doing this the gold standard way have stated that for me, it might not be necessary. There is no research on this yet. It's in its infancy. I've consulted and am consulting with surgeons and scientists from California to Washington D.C., on down the East Coast to Florida, and in between in the Midwest. I am a research machine. Unlike with my breast cancer, in my situation, there is no clearly defined "right answer" for how to be explanted. What I will say, is that I have the unwavering support of my PCP, my oncologist, my physical and movement therapists, the few friends I've shared with so far, and my family. The medical professionals all agree that for any hope of reclaiming my life, the implants must come out. The family has watched my slow decline and are anxious for me to attempt to get back to the joyful life I'd purposely crafted for myself after two cancer diagnoses. For all this, I am so grateful.
I am hoping for surgery in the fall. I will almost definitely choose the more difficult, more risky yet most-thorough gold-standard methodology to remove the implants. It's belt-and-suspenders insurance for me in terms of making a full recovery from this. I will not be reconstructed or reimplanted. I'm done with monkey-business. I will have, much like my mastectomies and reconstruction, a long recovery period, highlighted by further incapacity to perform activities of daily living (back to being showered by others, not lifting anything over 5 lbs., no vigorous movement or driving for 8 weeks). It is, essentially, to be my second bilateral mastectomy. How many women can boast that?
So many of us wish for do-overs. I don't wish this on anyone. Stay tuned.
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