Love Letters

When you're going through a health crisis, you cling to whatever little thing makes you feel better. See: My favorite, ancient pair of ratty pajamas from Gap Body. I don't know why. My body feels good in them, they're soft and soothing, it's sounding a lil' crazy here as I type it, but I often feel like I'm going crazy so . . . I just succumb to the ratty pajamas.

See also: Bobby Brown Creamy Concealer. My jam is "Sand." Every time I'm interviewed/write about "things I love," I laud this product. I think this might've been my very first premium cosmetic purchase, about 100 years ago when I was a junior litigator. As a woman who's part Lebanese, I have always sparred with the dark under-eye. The pruney color gets worse with crazy a schedule (junior litigator), lack of sleep (junior litigator, fresh parenthood, stale parenthood, shuttling a junior athlete around the country, insomnia since forever, cancer #1, cancer #2, chronic pain, explant exploration). This stuff makes me look like I actually might've slept. I am not a natural-born sleeper. I just dip my pointer finger in the little pot, schmear some magic under my eye (and into the inner corners, ladies! Life Lessons from Glamour mag!) and KA-BAM. If I can fool the world, I can sometimes fool myself. Been fakin' it 'til I make it for almost 25 years with this stuff. Kisses to you, Bobbi.

Neurontin/Gabapentin. Discovered by Gerhard Satzinger. OMG, ILY Gerhard! I first heard of this stuff years ago when my husband was prescribed gabapentin for chronic back pain (changed his life while he was on it). Then our DOG was prescribed gabapentin last December when she had an acute glaucoma flare and almost went blind (this has been A YEAR, letmetellyou). Then, last April, a doc suggested gabapentin to me when I could JUST NO LONGER SLEEP. We titrated me up to a 400 milligram dose every night and OMG, I loved my bed again for the first time in months. Still do.

My love for the stuff has only increased. A few weeks ago, I was desperate in Baltimore. Despite horrible pain and the inability to walk much, I'd had to travel with my daughter because my husband was having such severe back pain, he couldn't (again, "shit-show" cannot begin to describe this summer). My PCP and I had a long talk one afternoon about my back pain, my implant surgery, etc. and he suggested I try taking gabapentin during the day, just to see what it did for my pain. The mouthfuls of Aleve and Advil were doing nothing. 

Well. I'm going on 3 weeks and I want to do a dance for gabapentin. I want to shout from the rooftops because a measly 100-milligram dose, 2x during the day has given me a window into a pain-free life. I went out to lunch with my daughter last week and DIDN'T GRIT MY TEETH THE WHOLE TIME. I went to Trader Joe's the other day - I didn't browse, but I could do a little shopping. Like 10 minutes, but still. Do you know how long it's been since I've been in a grocery store? Could this allow me to cook a meal? I dunno. But not having to lie on the floor or in bed all the time is AMAZING. I can sit up. I'm living a tiny bit better through chemistry.

Last one: Tylenol 8 Hour Arthritis Pain Relief. I found this at CVS a couple weeks ago . . . had to make an Extra-Strength Tylenol run (no anti-inflammatories as I want to be ready for surgery at ANY MINUTE). Each cap is 650 milligrams of acetaminophen, but they're enteric coated so they're "extended-release." I was skeptical - was this a way to charge me more for Tylenol? I queried the ever-present, Tiniest Pharmacist In The World at my "favorite" CVS. She told me it's legit and encouraged me to give it a go. You can take up to 6/day, I take 2 in the morning, 1 after lunch and 2 at night. This with the gabapentin has been amazing for my pain. I got the CVS version, FWIW. 

Because you can't take the lawyer outa the patient, I've gotta say, "please speak with your physician before taking any medications," but as an ailing woman, I can vigorously urge you to immediately pull out your rattiest pajamas and slather on whatever concealer takes you out of the running for the cast of the "Living Dead."

Party on, patients!

Suffering In Silence Is My Superpower

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.

A year ago . . . .

A year ago this Memorial Day weekend, I began my descent into breast cancer Round II hell. On Friday, May 27th, I underwent the MRI-guided biopsies that would change my life (and my body) forever.

A year ago, on the morning of June 6th, as my daughter was yelling for me to come dry her hair after a shower, the phone rang and I heard, once again, "you have cancer." I listened to the details, thanked the caller, and got my daughter to school. I walked her there, walked home, called my husband, and fell apart. On the eve of my 10-year survivorship anniversary, I was doing this whole fucking thing again.

The summer was ruined, I'm not going to sugarcoat it. We had some good times, some wonderful times with family and friends, but there was a dark cloud over it all. My impending mastectomies loomed large and it was difficult, even for a mind-over-matter girl like me, to get over the thought of what was going to happen to me. To get over the fact that once again, I was going to be forced to make what seemed like impossible choices.

I went through the motions, made the preparations, and on September 19, 2011, my breasts were amputated. I was hollowed out, implanted, sewn up, and set free to "recover." And therein began one of the most difficult periods of my life to date.

It's so, so hard to describe the myriad feelings I've felt in the last year. Terror. Warmth. Gratitude. Dread. Wonder. Longing. Happiness. Pain. And let's not forget, itchiness. I celebrated every little milestone - and some were very little: from making my own tea in the morning, to being able to shower myself, to the ability to be alone in my home once again, to finally . . . finally! being able to sleep on my side, to clearance to open the refrigerator and lift things heavier than 5 lbs., to clearance for exercise. But things were still dark. My body was banged up. My mind was running wild.

But then sometime around the 4-month mark, the light began to shine in my life again, physically and mentally. I felt myself, MY SELF, coming back. My strength and stamina were improving. I'd run into DI's office and say "look! it's 9:30 p.m. and I'm still awake!" I could rotate my arms in their sockets and I feel my entire body getting stronger, again, from the Pilates and (then very gentle) exercise I could again enjoy. I was becoming me again. Only stronger. More determined. More gleeful. More joyful. Could it be? I was RECOVERING.

Now, a year out from diagnosis and 8 months out from surgery, I'm so so so happy to report that I'm "recovered, plus." I have energy and drive and determination again. I am happy and strong and these surrogate breasts I have feel like a part of me. Sure, I'm irate and sad that I did all that again and that I'm forever disfigured because of stupid cancer, but I'm beyond that, most days. Most days I'm giving cancer the middle finger by working out hard, facing the sun and smiling, making plans for the future, stopping to smell my roses, enjoying my dear friends and family and by, well, merely continuing to live.

If not for the miracles of modern medicine, my friends, I would not be here today. That little cancer I had in '01 would've killed me by now. I'm, as another cancer blogger calls it, a "Darwinian fail." But here's the upside of that. I got a second chance. And then ANOTHER second chance. You think I'm going to squander these amazing opportunities on stagnancy and self-pity? Hell no.

You never, ever know what's coming 'round the bend. It could be shitty, or it could be great. Why not steer yourself toward the great every single day you have? Why not? Don't you deserve happiness and fulfillment? I think we all do. I know I do. Watch me go for it. I hope you will, too.

So cheers to years, my friends. The last one's been crappy, but I have a really, really good feeling about the one upcoming . . . 'cause you know what?

I'm. Still. Here.

xo,

Sarah

Long time, no post! So much going on here, much of it wonderful, some of it "not so much." Click here for my latest CKN post, on the penance of survivorship . . . .

I promise to post an update soon - less than a month out from my 1 year Cancerversary - ?! Where has the time gone?

xo,

Sarah

New post on CKN

This time, on volunteering . . . it does a body good!

xo,

Sarah

Have you seen the latest?

My newest post for the Cancer Knowledge Network is here. All about babies . . . or lack thereof.

xo,

Sarah

Moving on . . . .

Last night and today have been interesting. Poor L. got the stomach bug that's been going around, and so last night I stayed up with her, holding hair and wiping mouth. Washing my hands more times than any manicurist would condone. And as of 4:30 today, we're both still in jammies, recovering. She's eaten, and is now asleep on the shag rug in the kitchen t.v. nook. I'm wondering if I'm coming down with what she's had or just reeling from the ikitude of vomit. I cannot STAND vomit.

But here's what I realized today. On the brink of feeling sorry for myself (. . . my productive day is shot to hell, I can't go get fitted for the new bras I desperately want and need, I feel like crap from being up most of the night . . . ), I re-framed and realized that this is EXACTLY where I want to be. Just a normal mother who's home with a barfing child. This is my WORST PROBLEM today. And that is just so frickin' great. How's that for re-framing finesse?

And to add to my good mood, an email came from the folks at the Cancer Knowledge Network. They've published an essay I wrote on how I learned to meditate during Cancer Round I. And they want more. I have a schedule of their upcoming topics and they want to do a series. Someone wants to hear what I have to say about living with cancer for the last decade?! You can see my latest here. And don't worry, I won't hesitate to shamelessly self-promote here when new stuff comes out.

So here's to sick days and cancer . . . and to good moods in spite of them.

xo,

Sarah