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



Friday, April 26, 2013

I Popped my Boob

In addition to the successful and "normal" scan of my girly parts yesterday, I also received some other good news. I went to Dr. B, my plastic surgeon, for a follow-up on the implant exchange surgery from 5 weeks ago. He checked the scars, declared everything normal, and gave me the go-ahead to begin my usual exercise routine again.  Time to get back into training for my triathlons!

At 5:30 this morning, I returned to Method 360. Woot woot!! I loved every minute of my daily classes with Trish and Kristin in December through March and couldn't wait to start again. Everyone was excited to see me back, and as I walked in, Trish said, "Just don't pop your boob." Ten minutes later, I popped my boob.

Seriously. I was doing some army crawl on the floor and I thought that my right side was sweating a bit more than it should. I peeked into my shirt and my sports bra was wet right on the front, so I ran to the bathroom. When I lifted up my shirt, I saw my that skin had opened up like an eye. The reddish purple implant was perfectly exposed through the 5 or 6 inch gap. Since I didn't take a picture, I've taken a page out of one of the funniest Mommy blogs I know of and I've drawn you a crappy picture of what I saw.

The oddest thing to note about this picture is that I didn't draw any blood. That's because there wasn't any. I mean, a little pinkish liquid, but probably only a few tissues worth. The implant itself seemed to be a pinkish purple color. (I think it started out clear, but it's been in my body for 5 weeks.)

So I returned to the gym floor, put my sweat towel between my exposed implant and bra (luckily, I hadn't really begun to sweat yet), and quickly realized that maybe Kristin could help since she has had these surgeries, too. The conversation went as follows:

Shari - "Kristin, sorry to interrupt. My stitches are popped wide open." (Lifts shirt.)
Kristin - Looks. Runs away. (I thought she was going to throw up.)
Shari - Calling across the room, "Are you okay?"
Kristin - "I'm calling Dr. B."

So Kristin is the hero of the morning! She got the emergency line to wake Dr. B. She drove me to his office and waited with me. She even assisted him with the restitching surgery! (He didn't have a nurse and had to keep his hands sterile, so he had her handing him stitches, betadine, and such.) She said it was really interesting to watch, as she got to see him pulling my skin aside, cleaning underneath, etc. She even snapped a stealthy picture of  me staring at the ceiling. Go Kristin!

Note that the clock on the wall says it's just about 7:00am. And the odd lump on my shorts is my shirt that I'd whipped off when Dr. B showed up.

So, all was done by a few minutes after this picture. We went back to get my car and Trish lovingly scolded me for popping my boob. Then back home to take care of kids and resume normal life. I don't even need painkillers today, but I'm taking it easy just in case. The biggest concern is infection because there was a gaping hole in my body, so I'm on antibiotics.

In retrospect, I'd noticed that the seam on my right breast was getting darker, like dark brown, over the past few days. I thought it was just part of the healing process for radiated skin. Then, this morning, it opened SO easily. Again, it was 10 minutes into my first workout. There was no tearing at all. It just spread apart. I guess I could describe it like a Ziploc bag opening, not a pants seam ripping.  I truly believe that the scar was going to open no matter what. The radiated skin hadn't fused together after the surgery, and the little dark area was a hole. If I'd been loading groceries this weekend and lifted my arm to close the trunk, the split may have happened. Maybe starting at 1 inch, not 5, but it was going to happen nonetheless.

Of course this whole thing has changed my perspective on going back to exercising. I still believe that I NEED to keep my body in shape. However, radiated skin doesn't care that there's a triathlon on June 9 and another on August 4. Dr. B says "no" to both of them. A week ago, I would have argued, but the shock of seeing my popped boob has me 100% willing to follow doctor's orders. As bummed as I am, exercise will have to wait.

So, how was your morning?




Wednesday, April 24, 2013

Another Nervous Day

This is a completely unrelated photo showing how my hair looks right now. (Sorry about the totally fake looking smile.) I was getting some sideburns, so I'm using headbands every day to train the hair to stay back. I think I'll call this my Kramer-look.

(Update and correction at the bottom.)

I'm nervous today. As you might predict, every single doctor's appointment these days is met with the fear of what bad news I might receive. Along with the term "cancerversary" on the cancer blogs, you'll also find the term "scanxiety". Everything points to me being fine, but I don't think I'll ever be able to calmly walk into a medical office again.

Tomorrow's doctor's appointment? It's because I did a very normal thing for a 41-year-old woman: I got my period. However, as you may remember, the tamoxifen I take is supposed to prevent the estrogen in my body from doing what it normally does, so I shouldn't be getting a period. And I haven't since starting tamoxifen. But then I did last week. Dr. Google and the many women who post on cancer boards and blogs said that I'm not alone, but I had to be sure.

When I called the oncologist's office, they weren't overly concerned ("It happens sometimes to some women.") but they advised me to call my ob/gyn. Her office has me set up for an endometrial ultrasound tomorrow. Evidently, tamoxifen slightly raises the risk of endometrial cancer. Very slightly: I go from something like 1/1000 odds to 3/1000 odds.* My odds of cancer recurrence without taking tamoxifen is much higher, so it's totally worth the risk. But I think all of my doctors have the same scanxiety that I have. They were surprised that my breast lump was cancer, so they don't want to miss anything at all. That's good, I guess. However, I'm stuck sitting in the very same office (Crouse Imaging Center) where my initial diagnosis was made. Fun times, huh?

Rationally, I know that this is nothing. From this National Cancer Institute link, I have none of the symptoms described. I'm 100% certain what I had was a normal period. (Women friends out there, I'm sure you'll agree that you totally know what your period looks and feels like. This was totally normal. Not at all "bleeding or discharge unrelated to menstruation".) And in case you, too, are freaking out a little, check out the last sentence: "Endometrial cancer is highly curable."

So, by this time tomorrow, I'll have been diagnosed with NOT having endometrial cancer. Then why am I still so nervous?

Update - My ultrasound was totally normal, with the endometrial lining measuring 6mm. (Don't know what that means besides hearing the word "normal" attached to it.) The unfortunate part is that my cycles are probably back, but that's better than the cancer being back. What was I thinking, throwing out my Diva Cup? That'll teach me to listen to the oncologist! Actually, my assumption is that Dr. Kirshner is used to dealing with cancer patients who are older, so he assumed when I'd stopped my period, it would stay that way. My regular gynecologist sees women of all ages on many different medications, so she's less surprised with my body doing whatever it's been doing.

*The math geek in me has to correct this statement. Going from 1/1000 to 3/1000 can actually be described as TRIPLING my chances of endometrial cancer. Fortunately, the increase from 0.1% to 0.3% is the slight increase I was referring to. See how statistics could be used to scare people?

Sunday, April 14, 2013

That Supreme Court Gene Thing

I really wish I had a better understanding of what's going on in the Supreme Court tomorrow. I know it matters, and I've figured out a little about it, but if someone wants to debate me on the subject, I don't think I know enough to hold my end of the argument. But I'm guessing that if I didn't have breast cancer myself, I know and understand even less. Therefore, I'm going to blog tonight to sort out the few thoughts I have, and do it as a teacher to anyone who wants to learn with me.

When I was diagnosed with breast cancer, I decided upon a double mastectomy. However, I could have said, "Why don't you just try cutting out that lump in my right breast? See if you can get everything without taking my boobs." At that point, the doctors would have said, "Let's find out whether you have the breast cancer gene. If you do, your body will probably grow cancer again, so your best bet is to go for the double mastectomy."

So my blood would have been drawn, and the sample would be sent to a company called Myriad. Then would check for the BRCA1 and BRCA2 genes using some patented technology they have invented to find the genes (I think). Then they'd let my doctors and me know whether I had either of them and decisions about treatment could be made from there.

I opted for the mastectomy without knowing about my genes. However, I did have a blood sample sent in to Myriad this past summer (just another blood draw during my chemo infusions). I wanted to know whether I was carrying a gene that Maggie or Reese or either of my two sisters might have to worry about. Also, those BRCA1 and BRCA2 genes also indicate something about cancer in the female parts. Clearly, my tests came back negative, or I'd know more about this.

Because the insurance through Paul's work has been superb throughout this whole thing (thanks SRC and Excellus), the genetic test was covered. However, I was warned in advance that this is an expensive test to do. Myriad is the only place that does this genetic testing. That's where this whole Supreme Court thing comes in. Does Myriad have the right to patent our genes?

In my opinion, they shouldn't. If Myriad has the patent to locate the BRCA genes, they control the price. I read somewhere that the company makes a huge profit off of this. Also, if they are making money from this without competition, where's their incentive to improve their research and find new things?

That's where my understanding of this stuff ends. I have a few articles (there are many) that you can read here in preparation for what will be in the news tomorrow. (I admit, they're pretty slanted toward my opinion.) Please feel free to post if you have anything to add or if I said something incorrect, and if you want to start that debate with me where I'll be unable to defend myself, go ahead. At least I might learn something.

http://www.huffingtonpost.com/2013/04/14/human-gene-supreme-court_n_3081399.html

http://msmagazine.com/blog/2013/04/13/the-breast-cancer-gene-and-the-control-of-womens-bodies/

http://bcaction.org/take-action/outlaw-human-gene-patents/


Friday, March 22, 2013

That Was Easy

That implant exchange surgery was a breeze! Though I've been taking it easy this afternoon, I'm amazed by how unaffected I am right now. I can walk around, lift my arms, turn my body side to side, and even gently touch my chest on top of the bandages. I haven't taken a pain pill since over 4 hours ago, and even then, I took only one when the dosage said I could take two.

Here's my play-by-play of  today: I had a friend pick me up at 6am for my 6:30 arrival time. I went in by myself and took the stairs up to the fifth floor because I could. Almost immediately, I was taken to get myself changed into my gown-that-opens-in-the-back and souvenir non-slip hospital socks. Here's my waiting-for-the-anesthesiologist picture:
After meeting a number of nurses who verified over and over who I was and what I was there for (no accidental nose jobs or vasectomies), Dr. Baum came in and drew all over my chest, presumably to make sure I'll be symmetrical and pretty. I reminded him, "When in doubt, go smaller." By 7:30, I was wheeled into the operating room, transferred onto the table, and fell asleep within seconds of something being injected into my arm.

Unlike after the mastectomy, there was no puking when I woke up around 10:30. Pain was about a 5 on the happy face to agony scale, but I got my Vicodin pill right away. Paul had arrived, and for some reason, I felt compelled to tell him that Maggie's classmate Connor didn't want a party so he got to go to Wonderworks for his 5th birthday. (I think the train of thought came from Paul telling me that school drop-off had gone fine and I knew that there'd be a birthday treat today.) Then the nurse told me to go back to sleep.

I was much more lucid and only about a pain scale 3 when I awoke again a little after noon. The nurse helped me stand up slowly, and since I wasn't dizzy on the way to the bathroom, I deemed myself ready to go home. Unfortunately, Dr. Baum had forgotten that if I wear adhesive against my skin for too long, I get a rash, so the nurses had to call him to re-bandage me with an Ace wrap instead of tape. He took a while because he was in another surgery, but as soon as he was done, I was outta there.

We stopped for a Shamrock Shake at the drive-thru on the way home because I hadn't been allowed to eat anything before surgery and I needed a sugar boost. Then I went up for another nap while Paul went to get Maggie and Reese from their sitters. Woke up and took another pain pill, but I've been fine since. I was downstairs for a normal dinner (not even the soup I'd planned on having), and the evening has felt just like a day that never included a surgery.

If you're waiting for the picture of my boobs, here's all I've got:
There's a faint marker line right down the middle from Dr. Baum's artwork this morning. Also, you can still see the radiation burn on my right side, which may never go away completely. (Mirror picture, so you don't have to reverse sides).

On Tuesday, I go in for my follow-up and Dr. Baum will remove the bandages. Unfortunately, he had to do a C cup (I was hoping for B's) based on the size of the skin and tissue that was there, but that's totally not a complaint. Boobs are boobs, and as long as this doesn't get infected or something, I'm a happy camper.

Thanks for all of the support and positive thoughts today. I'll update again soon, but compared to all of the other stuff from the past year, this was a big piece of cake!

Thursday, March 14, 2013

Shari's Hair - A History

The last time you saw my hair, it was just peeking out from my bald skull in those family photos we had done in October. It was blonde and seemed straight. Five months later, my brown curls have returned. Here is a picture of me right now, and please don't ask Paul how many pictures of myself I just took with his cell phone to get an appropriate angle.


It's curly, it's easy, I think it looks good, and it's not much of a change from before chemo, right? Although I could just keep it this way, I think I'm going to try growing my hair back to the length it was in 2011. I want to have made my own choices about my hair. After it's long again, if I want to cut it back off, it'll be because I liked the short hair, not because it was poisoned and fell out.

Yet I have fears - well-grounded fears - about what will happen to my hair next. Again, I'm going to let my pictures do the majority of the talking here, but in general, my curls will continue to grow OUT, rather than down, and my Jew-fro days are just around the corner.

Here we go with a history of my hair. Feel free to laugh at me. I did while scanning these photos, and if you don't almost spit out your milk (ahem, beer) at some of these pictures, you are taking this blog much too seriously. (Short description after each picture.)

 This is my original baby-fine hair. Short, straight and blonde, just as you saw a few months ago.

By six months old, my first little mullet-curls were growing.

 By two, I had a full head of curls, but still blonde.

 At almost-four, the color was darkening.

A little sun-bleached at age six. (I actually included this picture because of my socks and sneakers.)


My Jew-fro was beginning by age seven. But nobody noticed because they were too enamored with my bike.

Mom knew how to tame the friz and the height on fourth grade school picture day. Unfortunately, as you'll soon see, she didn't teach me the trick. Maybe I just stopped letting her spit in my hair. Also, note the dark brown color.

My almost-eleven year old hair is starting to get puffy. I think I was trying to grow it longer at this point. I guess Mom was too busy with the new baby to do my hair anymore.

Ah, twelve years old, braces, and some unmanageable curls.

A fourteen-year-old shot thrown in for its humor value. I truly believe that the popped collar is causing the mullet. I don't think I actually had one.

 Age fifteen. I entered high school with a full Jew-fro.

 Another one at fifteen, just to prove that this was a daily occurrence.

I even rocked my 'fro for an appearance in the local paper. (For those of you with good eyes, I still remember how disappointed I was that they cut out half of what I'd said and made me look ignorant.)

 By sixteen, I'd learned that a barrette on top can work wonders.

 The barrette was even used on more formal occasions.

I think around age seventeen, I discovered mousse. I used it to keep the hair down and could occasionally remove the barrette.

 Off to the college freshman dorm with my mousse and spiral curls.

The ponytail and bangs look was more common for me during freshman and sophomore year.

 This one shows how long I could let it grow, now that I'd discovered the barrette and the mousse tricks.

Oh, but then there were some fun nights with a hairbrush in the college dorm. After seeing my fifteen-year-old pictures, you'll believe me when I said that this did not involve a single spritz of hairspray. It's all me, baby!

Junior year, I cut it all off and went with the mushroom-head style. I then started this whole process over, growing it out through my late 20's and taming my curls with mousse through my 30's. Somehow, the curls kind of calmed down a bit after a decade of length and mousse, but now they're back.

One more college picture for good measure, though:
It's my original bald look, no adriamycin involved!

I can't figure out a closing paragraph for this post. I'll publish this now, sleep on it, and probably edit with a closing tomorrow. Nighty-night!

Wednesday, March 13, 2013

Silicon Boobs

I've been putting off scheduling my "new boobs" surgery because, frankly, I don't want to have another surgery. I currently have expanders, these hard, lumpy, not-at-all round bags sewn into my chest. They even have the potential to set off a metal detector, as there is a magnetic area on them. My plastic surgeon thinks the left one has leaked its saline, as it's much smaller than the right. Yeah, I noticed that, but given the description I just made, unmatched boobs just don't register on my radar.

I'll take a step back for those of you who may have started reading my blog late. Or for those of you who have not been obsessing over my life and may not remember stuff you read about me a year ago. Last March 16, when I had my double mastectomy, the surgeon cut out all of my natural (ahem, cancer-invaded) breast tissue from both sides. Instead of sewing up a flat chest, the government requires insurance companies to pay for me to get fake replacement boobs. So a plastic surgeon stepped in and put in these slightly saline-filled things called expanders, then sewed me up. In theory, I was to go back to the plastic surgeon every few weeks, he'd take a needle and put some more saline into the expanders, and like a balloon, my boobs would grow to the size they used to be despite not having any original tissue/fat inside. However, I opted not to have any expansions, and was fine with the 360cc's of saline that were in the expanders the day they were put in.

Once the typical woman's chest is the size she wants, she schedules a surgery called an exchange or swap. The plastic surgeon cuts along the same line as before, takes out the expander, and puts in nice round, soft, silicon implants. However, I was busy with chemo within a few weeks after my mastectomy. After that, I wanted to kill more cancer with some radiation for the next few months. Then I just procrastinated calling the plastic surgeon, waiting for the desire to get my new boobs.

It never happened. Yeah, I dislike the expanders, but not as much as I hated recovering from surgery.

But being the good, direction-following person that I am, I gave Dr. Baum a call and met with him a couple weeks ago. The surgery is scheduled for Friday, March 22. It's an out-patient surgery, which means that I'll show up that morning, get put to sleep, cut open, sewn up, and sent home around lunchtime. They say I'll be up and about by the next day, although weak. And that I shouldn't exercise for, GASP!, six weeks afterwards. (All my hard work?!?!)

On the bright side, here's an incomplete list of what this surgery will not be as bad as:
- Mastectomy drains
- A/C Chemo
- Neulasta bone pain
- Taxol neuropathy 
- Radiation burns
Since I'm done with all of that and I now have March 22 on my calendar, I'm now counting down the days to getting it over with.

Oh, "How can I help?" you're asking? Liz and Liz have added a few dates to the Meal Train. Also, I'm not sure when I'll get the green light to drive after my surgery, so I may need some carpool help for Bright Beginnings.

After that, I'll just be looking for someone to go shopping with me to help me pick out some shirts that accentuate my new silicon friends.

Monday, February 25, 2013

Getting Old and Getting in Shape



This post has the potential to rival The Longest Post Ever, but it encompasses about six months of my life as opposed to six hours.

I'll start with something I've wanted to explain to all of my friends who are approximately my age and warily approaching or just past the big four-oh. That birthday, exactly one year ago, didn't bother me at all. It's just a number, I didn't feel any different, and I've never cared about getting "old" or having a bigger age. In fact, I had to be persuaded to have a party for my birthday (which didn't quite turn out the way I'd hoped) and basically, forty is no big deal. However, now that I've finished my fortieth year (actually, my 41st year for you math geeks), I have an announcement: If you can make it through the week of your 40th birthday without being diagnosed with CANCER, you've got nothing to complain about.

Obviously, during my recovery from the mastectomy and while undergoing chemo, I didn't quite feel my age. My body ached, I was tired all the time, and I seemed to be getting any ailment that could possibly exist. Knowing that there'd be a light at the end of the tunnel, I just plowed on through, waiting to be young(ish) again.

I know that the stereotype is that women doing chemo are bald and skinny because they're nauseous. However, I found that I was only eating comfort foods: cereal, pasta, breads, and uh, cookies. Add to that the fact that I was taking a steroid to make my body strong enough to handle the taxol, and I actually gained about 10 pounds during chemo.

I'd read many-an-article about how important keeping in shape is in keeping the cancer from coming back. Basically, studies and research have inconsistent findings about the kiwi and broccoli diet or the all organic lifestyle, but it is an absolute that being overweight or obese can increase your chances of recurrence. Though I indulged during the summer of awfulness, I knew it wasn't a permanent thing.

Early in my treatment, I was alerted to a fitness program at the YMCA through the national Livestrong foundation where they help cancer survivors get into shape. Knowing little about it but seeing that it was free, I signed up. After a few phone calls, I was enrolled in a class that would meet twice a week for twelve weeks, give me a personal trainer at each of those sessions, and tailor my exercises to the fact that I've been treated for cancer. Not only that, but the Livestrong program includes a free 3 month family membership, and since my body managed to grow the cool kind of cancer (breast cancer is very vogue these days), there's a grant to extend that family membership for a full year. October 2 was my start date for getting back into shape.

Between the end of chemo and the start of Livestrong, I began taking tamoxifen. Although I've alluded to it in other posts, here's my chance to explain how it has officially made me old. My breast cancer cells were classified as estrogen receptor positive, which is actually a good thing. (Best breast cancer ever, remember?) It means that the cells need estrogen to grow. This drug called tamoxifen can block estrogen from binding to other cells, thus giving any cancer cells that may be left in my body nothing to grow on. Dr. Kirshner, oncologist extraordinaire, actually told me that the tamoxifen does more for me than chemo and radiation combined. Unfortunately, tamoxifen, by cutting off my estrogen, put me into full menopause. But whatever. It was going to happen anyhow, and menopause is better than cancer.

Knowing that I cannot miss a pill or accidentally double-dose ("Uh, did I take my meds? I can't remember.  I'll just take one."), I bought one of those days-of-the-week pill boxes. Then I started taking the pills and the hot flashes began. It was the one-two punch of officially getting old.

Back to the weight thing. My first dose of tamoxifen was August 31. Starting then, I was gaining almost a pound a week by eating my normal, pre-cancer diet. I figured out, with the help of Google, why that may have been happening: Post-menopause, metabolism changes, so I was supposed to be eating like a 60-year-old, not a 40-year-old.

But hoping for an easy fix, I mentioned my weight gain to my doctors in November. A blood test for my thyroid was ordered because sometimes underactive thyroid causes weight gain. Results: overactive thyroid. I should have been losing weight. They repeated the blood test and got the same results. I was referred to an endocrinologist, who couldn't fit me in until February, so I was on my own with my weight gain for a while.

I thought that Livestrong, with the twice weekly meetings and my maintenance exercising a couple more times a week, would help out, but I continued to gain weight. In reality, Livestrong wasn't enough. The trainers, Elin and Al, were wonderful and knowledgeable, but the program is focused on strength and balance, and (sorry if I offend anyone) really geared toward older, less athletic people. I was a twice-a-day varsity swimmer through college. I've done a triathlon and numerous 5Ks. Yes, that was years ago, but my athletic body was looking for and needing more. I had to find something hard and go all-out!

In mid-December, up 18 pounds from when I was diagnosed with breast cancer, I asked a preschool mom/friend (Kristin) about some Facebook post she made about a Method 360 demo class. She explained that she and a trainer named Trish lead these classes that give you a full body workout (cardio, strength, core). I showed up that Sunday and gasped for breath, dripping with sweat for an hour. Absolutely perfect! The next day, I signed up for a 12-week program and committed to going to classes 6 days a week, sending Kristin and Trish daily food logs, and letting them measure my weight and body-fat every other week.

Those of you who know me well (or probably even those who only kind of know me) will have no doubt that I've gone all-in here. If I tell someone I'll be there 6 days a week, I will. If I have to send a food log, I will include the 3 M&Ms I ate this afternoon, no cheating. If a triathlon in June is mentioned, I'll register. (Actually, I'm now registered for one in June and another in August. Anyone have a bike I can borrow?)

It took me about 3 weeks of the daily workouts, but now I am not gasping for breath. I'm working hard and I'm really feeling fit. I'm down about 10 pounds on the scale (Trish says it's more like 13 pounds of fat gone and 3 pounds of muscle gained), but that's no longer the goal. I just want to stay in shape. Also, keep in mind that I'm not yet even back to my pre-cancer weight, though I'm more fit.

The sucky part is the diet. Paul and I have always agreed that a life without chicken wings is a life not worth living. We've said, "I'd rather die a few years earlier and eat what I want." Though I still agree with our sentiments, I have to refer back to the studies that show obesity can cause cancer to come back. If chicken wings cause me to be overweight, I guess I'll skip them. I'm sure I'll have wings, brownies, and McDonalds on occasion, but my daily diet has to be better than it used to be. For the first few weeks of this diet, I was hungry all day, but now I'm used to it and just accepting it, I guess.

So my endocrinologist appointment finally rolled around a few weeks ago and he did another blood test to check the thyroid. Now I'm actually showing the underactive thyroid that causes weight gain. His explanation is that sometimes our thyroid gland gets inflamed and becomes overactive (which would make sense because my radiation was pretty close to there), and then once the swelling goes down, it becomes underactive. I'm now taking a thyroid medication, another pill added to my days-of-the-week dispenser. We'll recheck the blood in a few months. Maybe thyroid meds will help me lose weight, too? I can wish.

When my parents were alive and I would get updates from my mom about her 60-something and my dad's 70-something friends, it was always about who had what ailments. In this ridiculously verbose post, I've mentioned my meds, menopause, my hot flashes, my oncologist, and my thyroid. I guess 40 is the new 60.

I'll end with a cool discovery I've made that'll help you young women in the future. Hot flashes are really quite uncomfortable. From summer when they started (menopause actually started temporarily with the chemo drugs) until December, I followed the generic hints: wear layers, have a fan nearby, use a cool towel or ice, etc. Literally, the very week I started Method 360, the hot flashes went away completely. Now, keep in mind that this is a very intense, boot-camp-like workout. Livestrong's 90 minutes of weights and stretching did nothing for the hot flashes. But serious exercise really does get rid of hot flashes. Now you know.

Now I'll Cliff's Notes this post:
- Chemo made me gain weight
- Tamoxifen cuts off my estrogen. Good at fighting breast cancer. Causes menopause
- Menopause made me gain more weight
- I started easy workouts with no effect
- Complete diet change and kick-ass workouts have had the desired effect
- I was diagnosed with hypothyroid
- I take pills from a days-of-the-week dispenser
- Triathlons in June and August

Happy 41st Birthday to me!


Saturday, February 23, 2013

Cancerversary?

Cancerversary is actually a word that people in the cancer circles use. Ever since I heard it, I've been confused about it because I certainly don't want to celebrate any date involving cancer. Also, there are so many dates: the day I felt a suspicious lump; the day of my bad mammogram after which a doctor told me with 99.9% certainty that I had cancer; the day of the actual biopsy results proving that he was right; having the mastectomy which allegedly removed the cancer; finishing chemo; finishing radiation. Do I acknowledge all of them?

However, as this time of year has approached, February 24, 2012 is the date that resonates the most in my mind. I went into that mammogram thinking it was a three hour pass away from the kids. Quick doctor's appointment, then some grocery shopping sans herding cats through the aisles. I left that appointment having to concentrate on breathing in and out and putting one foot in front of the other.

Whether I will call February 24 my cancerversary remains to be seen. I'm trying to think of a better name. Suckity-suck day? Ninety-nine point nine percent sure day? Eat a brownie sundae day? Let me know if you think of a good name and I'll use it.

If it wasn't for the events of February 24, 2012, though, I wouldn't have started this blog. As you may have noticed, the blogging has tapered off recently. Maybe it's because life is pretty much normal, but there is a bit to tell. Stay tuned over the next few days to hear about how my life has changed since finishing my active cancer treatment.


Friday, January 11, 2013

Breast Cancer and Termites

I'm such a teacher. I want to make things easy to understand, so I spend time thinking about analogies that make complicated things seem much simpler. For the past few weeks, I've been working on a breast cancer analogy that I really think will work to explain where I am right now and why I'm not comfortable with words like "gone" or "cured".

Imagine that you are sitting on your back porch one day and notice that one of the wooden beams has something that looks like a bug trail running along it. You call the exterminator, and she confirms (yes, she...the one exterminator I've ever had was a woman named Leesa) that you do, in fact, have termites. She does a bit of probing and finds that there is a nest of termites in the wood of the back porch, and there are trails of termites marching around in the beam leading toward your kitchen. You know that termites, left untreated, can destroy a house completely, so it's time for action.

Feeling aggressive, you have your back porch completely removed, as well as that offending beam leading to the rest of the house. While the demolition team is at it, you tell them to go ahead and take off the front porch as well, since termites could show up there someday and you might as well be symmetrical.

Next, you're told that you there could be some termites, either individually or in groups, that walked away from that nest on your back porch and are hiding somewhere in your house. Leesa tells you that she has this termite poison that she can infuse throughout every wall of your entire house. It'll peel the paint and make the house stinky for a while, but it's pretty darn good at killing termites. So you let her come every other week for four months and poison your walls. It's okay. You'll just repaint when it's all done.

After that, she reminds you that although the back porch is gone, there is still that wall where the porch was attached to the house. Her next line of offense is to carefully use a blow torch to do a controlled burn of the wood that's left. That'll get any termites that survived the poison and prevent new ones from growing. After 28 straight days of gradual burning, the wall may always look a little darker, but it's better than termites.

Finally, Leesa advises you that your termites liked eating bread. You must now go for five years without ever having bread in your house, because there might still be that rogue termite somewhere. She cannot actually check every wall and every beam, so you just have to trust that all of these things you've done have actually removed the termites from your house. She tells you to call her if you notice anything odd about your house so she can look more closely, but you're basically on your own now.

Throughout this whole process, you've learned a lot about termites. You found the scary fact that 30% of houses that go through this will eventually have termites again. (This is called metastatic, or stage IV termites.) Unfortunately, the famous termite research foundations are spending more than 95% of their money on looking at porches. Don't you wish they would spend some more time and effort figuring out why, even after all you've done, you might still get termites again? And figuring out how to prevent that?

I hope this analogy is as clear to you as it is when I think about it. Should I give a list of what all of the termite treatments were really called in regards to my cancer treatment, or did you figure it all out?

Quiz on Tuesday.