Friday, December 27, 2013

Running and Reality

When you last heard from me, I promised to post explaining the joyous occasion of my first braless run. On October 30, three weeks and two days after flatty-flattening surgery, I laced up my sneakers and jogged 3.12 miles along the Erie Canal trail. However, I didn't blog about it because reality got in the way.

A week prior to that, my friend and fellow runner Mary had taken her 3-year-old to the pediatrician with a fever and tummy ache and within 24 hours was a mother of a child with cancer. As I jogged and tried to analyze whether my unsupported chest was jiggling at all*, my mind kept being drawn back to Mary. She has always followed this blog and commented with wonderfully supportive and encouraging words. I could imagine that she'd have been one of the first to "like" my braless run post and would have smiled a little and thought of me as she pulled on her sports bra the next day for her run.

Suddenly, my run was irrelevant. Mary and her family would be facing surgery, chemo, radiation, and a lifetime of worry about a beautiful little boy. I couldn't sit down and write a whimsical post.

It's now been more than two months of silence on my blog. Life has been moving on for both Mary and me. Her son has one less kidney, 8 radiation treatments under his belt, and no hair due to his ongoing weekly chemo infusions. I accepted a challenge from another friend, via Runner's World, to run at least a mile a day each day between Thanksgiving and New Year's Day. But again, I have to default to what matters and write about cancer and not me "streaking".

As much as childhood cancer (and all cancer) sucks, and I cannot pretend to know what it's like to watch a child go through what I did, the "Best Breast Cancer Ever" has put me in a unique position. I've been there. Quite recently, in fact. Although I still sometimes sit in front of my computer screen trying to figure out what in the world to say to Mary, I hope I can make her feel less alone in this cancer reality. I can give her specific hints or time my well-wishes based on my experience. Honestly, I'm paying it forward. My friend Lisa in North Carolina somehow always knew the right thing to say during my treatment, as she'd been there long before I was.

While Mary is still living this active cancer treatment lifestyle - going through the motions of everyday life while working chemo infusions into the family's schedule - I'm in a bit of a post-treatment limbo, which brings me to a second reality story.

There are many other women who had/have breast cancer and choose to blog. Seriously, there are thousands of them. When I first started googling to find women who had been through what I experienced, I found an abundance of blogs where the writer is stage 4 - incurable (metastatic) breast cancer. At first, I avoided them because they are the scary reality of what I may experience someday. But once I finished treatment, I felt I had to educate myself and learn from these women.

One of the most popular stage 4 bloggers is a woman with an elementary school aged son who had a similar diagnosis and treatment to mine. She finished her 5 years of tamoxifen and breathed a sigh of relief that she'd passed that arbitrary milestone. Soon afterwards, an old injury of hers (I think a broken rib or something) started bothering her. She didn't think much of it but mentioned it to her doctor who did some precautionary scans. She was shocked to find out that her breast cancer was back, this time in her bones and lymph nodes.

Upon reading her story, I vowed to take everything about my body seriously, and I just had my first experience to find out whether my oncologist will do the same.

My whole adult life, I've had monthly migraines (you know which time of the month, right?) that can be as bad as 7 or 8 on the pain scale. They occur on the right side of my head and can usually be controlled with Excedrin-the-wonder-drug. In early December, I started each day thinking I was getting that headache. It was always on the right, but always dull. By mid-day, I'd be surprised that the headache never progressed beyond a 2 or 3 on the pain scale. For two weeks, this happened every day, and I was feeling lucky that I hadn't had a bad migraine.

Last Friday, I suddenly thought more about these, ahem, lucky migraines. Every day for 2 weeks? My goodness! It must be a brain tumor! By the end of the day, I noticed that my right ear was clogged as well! That tumor must be huge! And Google confirmed that the 4th most likely place for breast cancer to metastasize to is the brain! I went to bed on Friday night with a full-blown migraine.

This Monday, I called Dr. Kirshner, who DID take me seriously. Actually, I never had to speak to him. I called and left a message with the nurse, and within hours I was scheduled for a brain MRI on Thursday morning. (It probably would have been sooner but there was that whole Christmas thing in between.)

I'll skip over the three days more days of analyzing how bad this tumor was and planning how long I have left to live, and report with the exact words the nurse said on the phone about an hour after I left the MRI center: "MRI looks great. Nothing going on in there." (Celebrate the news and then giggle with me that she was actually referring to my brain. Hahaha!)

Despite the fact that I'm usually the most rational of people, my new reality is that I have to be this ridiculous and call the oncologist about a minor headache. Everything is serious, or can be. This is how Mary will be thinking about her son, too. That's the reality for a cancer patient.

* Now about that run: I only noticed the braless thing for the first 10 steps or so. Nothing was jiggling since there's nothing there to jiggle. What I DID notice is that my tummy jiggles when I run. I'm sure it always has, but the large bouncing breasts always distracted me from noticing. Now, I have found that I want to suck in for my whole run to prevent tummy bounce. Probably good for my abs, huh?

Monday, October 14, 2013

Ugly and Perfect

I'm going to start this blog post with something I wrote to a friend after she emailed me to ask about how I'm recovering from last week's surgery:

"I'm loving this little/no boobies thing! It's ugly (stitches and symmetry-wise), but it's perfect for me. I've been so sick of my boobs and worrying about them that it's a relief to have them GONE. And my body is now so used to being cut and stitched, that I've barely had to slow down this week. I hope I don't sound fake-chipper, like everything's great but it's really not. I am truly just plain old thrilled to get on with my life."

I actually don't even think that paragraph fully describes how tremendously wonderful I'm feeling about my decision. Why did I ever go for reconstruction in the first place? Actually, I do know the answer to that. I wanted the doctors to make my cancer go away immediately, so when they told me what is usually done, I simply said, "Do it." Most women want reconstruction, so the doctors told me it would be easier to do it up front. Now, a year-and-a-half later, I've had time to think about who I really am. The real Shari never needed fake boobs in the first place. I'm SO happy to have them gone.

HOWEVER, something I left out in my emotional posts trying to accept my cosmetic/corrective surgery last week was a description of the reality of what I would look like after my reconstruction was reversed. Paul and I were quite aware of how flat I'd be, but since that doesn't matter to us, I didn't even think of describing it here. Now that it's done, I want to prepare you for the pictures you know I'm going to share.

I'll begin by linking you to another non-reconstructed woman. During the summer of 2012, that bummer summer when I was enduring biweekly chemo treatments, I read a few stories about Jodi Jaecks, a woman in Seattle who wanted to swim topless after undergoing a bilateral mastectomy. She did eventually win the right to do so, and not surprisingly, she was willing to be pictured in a local paper without her breasts. She's really skinny, so I knew I wouldn't look quite like her, but it gave me a starting point as to how to picture myself.

For reference, here's a shot of me that shows the boobs before the best breast cancer ever. Note, this was before I started taking naked pictures of my breasts. And the hunchy posture was because I was talking to 2-year-old Reese in the chair next to me. But it gives a good view of the 36Ds while they were still growing the breast cancer.


Now here's the after picture, a bit blurry due to 4-year-old Reese's photography skills. I've been reading from other flat post-mastectomy bloggers that the most common comment I can expect is about having lost weight. In truth, I'm almost exactly the same weight in both pictures, but in better shape now.


 Before I show the nakey picture, I want to tell my closing story, so people who don't want to look can just click away after the punchline. As you can see, I have a little tube coming out of the bottom of my shirt leading into the black fanny pack. That is a drainage tube, and in the fanny pack is a little bulb that holds the blood and fluid that drains out of my body. The other day I had this conversation with Paul:

Me - "As much as I loathe having this drain and I'm counting the minutes until it comes out, I'll actually miss having a fanny pack. It's such a perfect size to carry wallet, keys, phone and pen without having to bring a purse."

Paul - "You know, honey, you don't have to have a drain in to wear a fanny pack."

Newly boobless me - "Yeah, but that would look weird."

(That was the punchline, so people who don't want to see my boobs, please click away now.)

Here's ugly but perfect me!


Saturday, October 5, 2013

Correction - Corrective Surgery

I've sincerely appreciated all of the validation and support since I posted yesterday about Monday's cosmetic surgery. Every word and "like" has helped build my confidence in my decision. There's one Facebook reply that I have to copy here, though:

"Elizabeth R... - Shari, I hope no one in the medical field made you feel this surgery was cosmetic. It's corrective, not cosmetic. It's not just about visual symmetry or having smaller boobs (both awesome reasons to have it done, btw); it's about the fact that the original surgery had a complication and you are correcting the outcome. You have an asymmetry and scar tissue, both of which could contribute to problems in the future (referred pain, muscle tension, neck and back pain). The PT in me is relieved you made this decision and knows that Practical Shari rocks! The friend in me hopes you treat yourself as kindly as I know you would treat me if things were reversed."

So lookie there! I have a new name for the surgery! I'm having "corrective surgery" on Monday. So much less guilt involved.

In answer to Liz's question, none of my surgeons ever gave me a name for this surgery. In the beginning with the cancer diagnosis, appointments were made for me with many different kinds of doctors for tests, surgeries, and treatment plans. Now that the cancer is (supposedly and hopefully) gone, I have to take the initiative. I call the plastic surgeon. I call for a second opinion. I check with the radiation oncologist to make sure it's safe. I call the surgery scheduler. Therefore, it feels elective, and since the doctor is a plastic surgeon, it felt cosmetic.

Now that I know it's CORRECTIVE, and because of all of the offers I've received, I'm ready to accept a little help during my recovery. Liz and Liz (one from above and the same team from last year) have updated my Meal Train with a few more dates. Here's the link. I'll keep everyone posted if any other needs come up.

Thanks again for all of the support and friendship!

Friday, October 4, 2013

Fixing the Crater Boob

If you read blogs by women facing breast cancer, something I'm sure you all do for kicks and giggles during your free time, you'll find that many women post at least once about sadness regarding the loss of their breasts or the change in their natural appearance. In fact, a local friend who blogs about her experiences unabashedly admits to crying in front of the mirror about her new appearance. Although I respect this perspective, I couldn't be more different. I don't care. I can remember crying three times in the past two years: the first was when I found out about having cancer and I was worried about how it would affect Paul and the girls, and the other two were in the bathroom feeling painfully sick during a/c chemo. When I look in the mirror, I think things like, "It's crazy how quickly I've adjusted to my look without nipples!" or "Isn't the human body amazing that you can cut it open and then sew it up like a shirt and it heals itself back together!?!" or "I wonder why that skin is sticking to the bottom of the crater?" (Answer: scar tissue.)

I know I'm a bit of an oddity among women in my nonchalance about my appearance. But I actually take pride in the fact that I'm confident enough to be photographed in my bathing suit, bald and steroid swollen up 18 pounds, and have it posted on Facebook. See:


Now I have to bring up our friend the crater boob. With it, I've performed all of my duties as a mom, wife, and friend. I've completed a triathlon and a 10k. I don't think I've been judged or lost any friends due to my lopsidedness. And I can still look in the mirror and smile.

So it is with quite a bit of guilt and embarrassment that I make this vain announcement: I'm having surgery to fix the crater boob on Monday. I'm actually having the other implant taken out, excess skin removed, and both sides pretty much flattened out.

My primary reason is that the mathematical principal of symmetry appeals to me. Although most people, including me, are not precisely symmetrical, this seems vastly different than one ear being slightly higher or a mole on one side that isn't on the other. Bras don't fit and shirts are lopsided. "But you're alive and happy!" I argue with myself. I have no response, but somehow I've decided to go ahead with this surgery.

A second reason for this decision is that I have learned that I prefer my natural body to silicon. There's nothing specifically wrong with the implant, but for someone who doesn't wear make-up and has never dyed her hair, having a big silicon breast seems just as hypocritical as me having Monday's surgery.

Finally, and this is the most selfish reason: I just want small boobs. I wanted them originally, but when Dr. Baum decided to recreate what I had before I didn't complain. Healthy was most important. But here's another opportunity for the small boobs I've always wanted.

See, I'm riddled with guilt.

To explain what's going to happen, I'm going to put a nudie picture right here on the main page of the blog. Sorry Ron and any other men reading. I'll crop it and make it small so it barely even looks like a breast. Here goes:


On Monday afternoon, Dr. Baum* is going to cut open the seam down in the bottom of the crater. Then he'll scrape the scar tissue out and cut out the surrounding skin. Finally, he'll sew top and bottom skin together, flattening out the appearance. Using that right boob as a guide, he'll cut open the left side and remove the implant, and do his best to make them match. Then Flatty Shari will wake up, hopefully not be in too much pain, and go home to resume normal life.

I've checked with Dr. Alpert (radiation oncologist), and even she seems confident that the radiated skin that caused so many problems will heal appropriately.

Since I've been feeling so hypocritical about this elective surgery, I've procrastinated blogging about this surgery, now only 72 hours away. I know you're going to ask how you can help. Caring for the girls on Monday is covered (thanks, Karrie), and a ride to gymnastics on Tuesday is, too (thanks, Sarah). We haven't lined up any meals for next week, and a ride for preschool on Wednesday might be in order, but this operation doesn't award me any special treatment. It's all vanity, I tell 'ya!

*I did go for a second opinion, and this new plastic surgeon was better with the whole bedside manner thing, but he suggested doing the very same thing. Dr. Baum has been with me the whole way along and is a great surgeon.


Wednesday, October 2, 2013

Pinktober Misconceptions

Picture from breastcanceraction.org
Usually when I post, it's with information about MY breast cancer and how I'm doing personally. I even managed to do that on my Pinktober post last year. Today, I'm going to veer away from posting about myself just a little bit to make sure that you understand two important things about Pinktober. It's fine with me if you want to "celebrate" (although I do not), but the teacher in me has to make sure you comprehend what's going on.

Misconception number one is about self-exams and mammograms. They do not cure breast cancer, and they do not save lives. If you are performing a self exam or getting your annual mammogram and a malignant lump is found, you already have cancer. While it's great that breast cancer awareness led you to find the cancer, you still have cancer. Personally, I had my first mammogram at age 35 (earlier than recommended) and nothing was found. They told me I didn't have to come back until after 40, and then through a self-exam at 39, I found my cancer. It wasn't CURED by my diligence and awareness. And no matter how early I'd found it, it could still come back after all this treatment I've received (called metastatic breast cancer, which I've mentioned fearfully but realistically a number of times before). My point is that people being "aware" of breast cancer isn't doing the trick. The money and celebrations should focus on paying scientists to find that cure.

The second misconception is about the pink stuff you see in stores. Imagine you run into the grocery store for toilet paper and yogurt. On the way to the check-out, you see some cute, pink, fuzzy socks with a pink ribbon on them. The sign above the socks says that 10% of proceeds for fuzzy sock sales go to breast cancer research and awareness.You figure that with winter coming, you can never have too many warm socks, and you're helping out with this breast cancer thing, too, so the $10 for the socks is well spent.  Guess what? You just gave $1 to help with that cure mentioned above (or less, if you discount the awareness part), and you gave $9 to the grocery store and the sock manufacturer on an item you weren't planning to buy in the first place. Just an idea: Send the whole $10 to a reputable breast cancer researcher. Or buy a meal for someone undergoing treatment. Then get your socks at the sock store when you need them.

I tried to keep this short and simple so I only included two of many misconceptions. There are plenty of other breast cancer bloggers like me who have negative opinions of Pinktober and pink in general. If you're interested, here's a link from Nancy's Point (blog) and another from The Accidental Amazon (blog), and an amazing article from last April in the New York Times but in general, just Think Before You Pink.

Tuesday, June 4, 2013

Build-a-Boob

The other day, I promised pictures of this new non-boob that I have. Before I show them I have a silly analogy to explain what my right breast now looks like. I don't know if this analogy is at all accurate, as the morning Dr. Baum was removing the implant, I was in a little pain from his pulling and scraping and a little shock from this second failure of the stitches, so I didn't ask questions. But I think my boob is a little like a Build-a-Bear.

When you choose your animal at Build-a-Bear in the mall, it has a non-sewn hole in its side. The stuffing technician helps you put as much filling into your bear as you wish. Firm? Fluffy? Your choice. Then the technician stitches up the hole and off you go, assuming your bear's seam will stay closed forever.

With my right boob, the skin had been irradiated. The stitches they use in people, as opposed to stuffed animals, do not remain in forever. Our skin is supposed to heal and stick itself together. When the stitches dissolved (or whatever they do), my skin couldn't hold on and pealed apart, exposing my stuffing. Even a second try with more stitches didn't work. So now, my stuffing has been completely removed.

The part I didn't expect is that Dr. Baum seems to have stitched the skin not only to itself, but to whatever is behind it. Imagine your stuffed animal without any stuffing, then the technician does the sewing while the bear is on a table. The thread picks up not only two sides of the opening, but the material on the other side. So for my boob, there's a serious crater. I'm not talking a little indented scar. I'm talking inverted breast.

So without further adieu, here's a clothed picture of this failed Build-a-Boob.


And here's a link to the nudie picture #1 (taken in a mirror so backwards) and picture #2. (Warning - NOT PRETTY!)

What's next? I'm so done with this. I really just want the other implant out so I'm not lopsided (for physical, not aesthetic reasons). Boobs have been nothing but trouble for the last 16 months, so good riddance. I'm wondering if the skin can be flattened out, but that's just cosmetic and I'm willing to have two crater boobs and/or wait for that plastic surgery.

However, Dr. Baum's suggestion during the removal surgery was a prosthetic for the right breast and keep the left implant. I'm meeting with him Thursday for my one week follow-up (and to get the drain out!!!), so we'll see whose opinion wins. Plus, there are more options like "flap" surgeries. I think that's grafting skin from my tummy or back onto the right breast to replace the damaged skin, but those evidently have long recoveries, and I'm definitely not interested in that.

I really don't think I'll change my mind about not wanting boobs anymore, but I'll keep you updated about what decisions are made or if any other options come up.

Finally, don't worry about me. I'm not overly strong or inspirational. I'm just doing what any of you would do in my situation: Living my life and being with my family. Nothing brave about it.

Wednesday, May 29, 2013

I Lost My Boob

Remember how we all kind of blamed my gung-ho exercising for that Boob Popping event? Because of that, for the last 32 days I've been pretty good about following rules. Disregarding a slight lawn-mowing slip-up and a couple games of tag, there hasn't been any illegal exercising going on.

Imagine my surprise when I got up to pee at 4:00 this morning and found a hole in my breast. About an inch of the skin had opened and there was our friend the implant. I won't draw the picture again, but it was identical, just a smaller hole. So it turns out that stitches in radiated skin can fail when (a) doing army crawl, jumping jacks, and plank or (b) sleeping on one's back.

Again, in retrospect, the last scab from the stitches had fallen off yesterday and there was a drop of blood in the evening, but I figured I call the doctor in the morning. That turned out to be too late.

Back to 4am: I woke Paul, we called Dr. Baum's emergency line, and he was paged. This time, he said to cover it with gauze and tape and be at his office at 8:00. And he did let me know that, "That's it" for the silicon implant. He'd be removing it and sewing me up with nothing in there. After hanging up the phone, Paul and I could theoretically go back to sleep for a couple hours. (Yeah, right.)

As I've mentioned, I'm totally numb along that seam, so I didn't feel anything when Dr. Baum pulled out the implant. I asked for it as a souvenir, but he has to check with the implant company to see if it's okay or if they take them back. (Recycling implants? I don't think so.)

Then he had to scrape out the alloderm and whatever scar tissue was underneath my skin. That hurt! But he told me that my daughters should be proud of their "One tough Momma" so I gritted my teeth until it was over. Then the best part (note sarcasm): I got a drain! Ah, memories. Stitched up, boobless, and on my way before 9:30. The rest of my day included two Wegmans trips, setting up a Hello Kitty sprinkler, and the girls' dance recital.

So I'm lopsided. It ain't pretty, either. Dr. Baum didn't remove any skin from my D-cup implant and there's a deep seam across the middle. Picture to come after I remove the bandage.

I know this all begs the question: What next? To be honest, I'm sick of this shit. I just hope the seam stays closed without the tension from the implant pulling on the skin, and if it does, I may just go for stuffing my bra or being seriously uneven for the foreseeable future. There are many other options which I'll research eventually. But again, I just want to take the quickest, easiest path out of this breast reconstruction adventure.

To end this post on a smiley note, here's the dance recital video. Maggie is the dancer on the far right in the front row, and Reese is on the far right in the back row. And remember, they're 5 and 4-years-old.

video