Ten Things Breast Cancer Taught Me

10 ten things breast cancer taught me run lipstick chemo

Three years ago, I went from being a scientist and stay at home mom to a breast cancer patient in what seemed like a heartbeat. Chemo and a double mastectomy with reconstruction have taught me a few things that doctors never could. If I could go back three years, this is what I’d tell newly-diagnosed me…

  1. You will get over your modesty very quickly. I’ve never been part of a flash mob, but I’ve definitely flashed enough people to constitute a mob! Best estimates are that I’ve flashed well over 100 people since I was diagnosed. (Yes, I counted.) My body went through so many changes during my treatment for me to share with professionals and curious friends alike. There was the port– the weird alien-like device implanted under my skin to deliver my chemo meds, my mastectomy scars and drains, final implants and even my first tattoos— trompe l’oeil nipples!
  2. You will be in awe of how much you are loved. Your family, close friends, friends you haven’t seen in years, people you don’t even know will rally to support you in ways you could never imagine. They’ll bring you meals and watch your kids.You’ll return home to find cupcakes and magazines with thoughtful notes on your doorstep. Your days will be filled with coffee dates, and your friends will fight for the opportunity to join you at a four hour chemo appointment. Your out of state mom will send you a fabulous pair of flats to wear to chemo because she knows your love language is shoes. You will be overwhelmed with gratitude.
  3. You will see breast cancer everywhere you look. Remember when you were pregnant and it seemed like every woman you saw was pregnant, too? Especially if you share my extreme misfortune and are diagnosed in October amidst breast cancer awareness month, you will see pink ribbons everywhere. At the grocery store, they’ll ask if you want to round up to donate for breast cancer. You will fight the urge to tell them that you gave at the office. Or that you’re giving two breasts and a full head of hair. You’ll keep your forty-two cents, thank you very much. Instead, you’ll probably just smile and say, “Thanks, not today.”
  4. You will learn that immediate reconstruction is not immediate. I remember thinking how great it was that surgeons could completely reconstruct a woman’s breasts at the time of a mastectomy. I didn’t realize that “immediate reconstruction” actually means “starts at time of mastectomy and finishes with at least one more surgery sometime in the next year or so.”
  5. You will become obsessed with other women’s breasts. Once you’ve had a breast surgery or two, you kind of forget what normal breasts look like. What you see in the mirror is not necessarily bad, in fact it may be great. But it’s not normal. You will begin to examine other women to see how your breasts compare to theirs. (You will hope they don’t notice this.)
  6. You will talk about things like drains, mouth sores and nipple tattoos all the time and in the strangest places. Like new moms form an instant bond discussing the trials and triumphs of new motherhood, you have an immediate connection with anyone who’s been through a breast cancer diagnosis. You will also have these chats with everyone from your neighbor to your dental hygienist to an elderly stranger at Starbucks, because when you’re bald, these kind of things just come up.
  7. You’ll wish you had more pictures. No, really. Nothing reminds you of how far you’ve come than seeing where you started and where you’ve been. Plus, pictures smiling with your kiddos, spouse, or friends are a great reminder of how much you’re loved.
  8. You will find that you didn’t realize how important breasts really are, even if you’re done using them to feed babies. Your surgeon will tell you early on that you won’t have any sensation and you will nod, thinking of nothing but getting rid of the cancer. You won’t realize the significance of losing sensation. Not so bad not to feel the needles of the tattoo artist recreating your nipple. Sometimes devastating not to feel the gentle touch of a husband’s hand or a child’s nuzzle.
  9. You won’t need to wear a bra! You may think you will anyway, but since it’s tough to find one that fits, you will likely get used to going braless pretty quickly. Your BFF will probably insist that you try on every strapless and backless top that you see when you’re shopping “because you can.” (And you will totally rock them!)
  10. You may never again have “just a headache.” Every little ache and pain will make you think your cancer is back. Hip pain? Cancer. Menstrual cycle two days short? Cancer. Forehead pimple? Obviously cancer. BUT, you will get used to it. You will be surprised when you go an entire day without thinking about cancer, or when you forget to mention to a new doctor that your nipples aren’t real. Yes, you will be different, but you will get used to the person that you are.

The most sobering thing I learned is that roughly 30% of women diagnosed with early stage breast cancer will develop a recurrence– metastatic disease– that will ultimately claim their lives. While women with breast cancer are living longer and stronger, 108 women still die of breast cancer EVERY. SINGLE. DAY. The patient in me wants you to understand the personal side of the disease, but the scientist in me wants you to know that women with metastatic disease are depending on the breakthroughs that medical research provides to keep their lives from being cut tragically short.

Road Trippin’ | Seatbelts and Mastectomies

imageSo it turns out that seatbelts and mastectomies don’t always mix well. A couple of years ago, fresh off my mastectomy, I found this little gem at an auto parts store and found that it really did help me be more comfortable. It’s hard to believe that it’s been over two years since that discovery. Since that surgery. I’d hoped I might “grow out of it,” but I still have some nerve issues that make a seatbelt cutting between my breasts (especially on the driver side) irritating. It’s not that big of a deal driving around town, though I find that I pull the seatbelt away from my chest instinctively at this point most of the time.

As we headed out on our first long road trip this summer, I knew comfort was going to be key, so I put on a loose comfy tee and a pair of running capris, and we set out. I quickly figured out that a loose tshirt and a seatbelt, even with its cushioning, was a bad combination for me. By the time it was Clay’s turn to drive, I thought I was going to come out of my skin. It took nearly my whole shift as passenger to get comfortable again, and then I had to shift back to the driver’s seat.

Thankfully I had taken along a sports bra or two in case I wanted to get in a run (ha! It was WAY too hot!) and so I put that on for the ride home. The difference was HUGE! I don’t have to go for a lot of support, but the way that a sports bra creates sort or a flat surface keeps the seatbelt from getting between my breasts and irritating me.  While I still pulled the seatbelt away reflexively, I was actually comfortable even when didn’t.  I’m not convinced that I need a sports for actual sports (though it feels too weird not to wear one!) but apparently, they’re my new must have for road trips!

Gettin’ My Groove Back | Running After Cancer

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I managed to run all through chemo. I didn’t go as fast, or as far, or nearly as frequently as when I was in top shape, but I had cancer. So I was winning. Then surgeries started creeping in, and I LOVE my plastic surgeon, but he’s a stickler about limiting activity after surgery. The six week ban on anything that causes you to bounce or break into a sweat probably isn’t necessary, but he wants to ensure the best outcome possible. When it comes to plastic surgery, I’m all for a good outcome, so I obliged.

We all know that breaking a habit is far easier than starting a new one, so at the end of each six-week doctor imposed hiatus, it took a while to get back into the groove of a regular morning run. And then as soon as I’d gotten back in the swing of things, I’d need another surgery. Training interrupted by surgery has kind of been my go-to excuse for the last two years. But just this week I realized that my most recent surgery was in June of last year. That means I’m almost a year surgery-free! Which is awesome. But also, that fact makes my go-to, perfectly respectable excuse completely pathetic. There’s no reason I should be sleeping in far more days than I’m getting out for a run.

Enter the plan to get back my groove. It is a multi-pronged approach:

  • Run with a friend: Accountability helps. And so does companionship. Last week I made Emma Clare run with me before Turner’s baseball game. I have a neighborhood friend who I run with before the kids head to school– our plan is twice a week. (When life doesn’t get in the way.) And then Sally and I have decided to resurrect our chemo runs, meeting in Old Town once a week or after a shopping outing, and have even added a third friend to that mix.
  • Make a goal: I’m completely out if I don’t set myself a goal. But with a (reasonable) goal, I’m a fierce competitor. So I’ve got a couple of friends in on it, and we’re doing a minimum of three runs a week and reporting back. I kind of wanted a mileage goal for myself, too. I decided on a May marathon– not that I’m going to run a marathon at the end of May (ha!) but that I’ll run a total of 26.2 miles in the month of May.  I’m off to a pretty strong start, though, so I am thinking I might need to up that goal…
  • Power through: This is the hardest. The weather yesterday morning was perfect for a run, the trails were packed, and the trees were lovely. And my run was abysmal. I’m not fast, so it doesn’t bother me to get passed. But yesterday, I got passed by a guy running in a cotton tee and dockers. (Hard to tell myself that he passed me because he puts in a lot of miles when he’s running in a pair of chinos.) Also, I got passed by a woman at least twenty years my senior, who, based on the fact that both knees were taped and she had a terrible gait, was running in a significant amount of pain. Hard to keep going after grandma limps by. The one lucky break? One of the top candidates for neighborhood gazelle joined the path quite a bit ahead of me, so she can keep saying with conviction that she’s sure I’m not that much slower than her. Nevertheless, I finished the run and was determined today would be a better day.  I had actually set up two running dates. First one got cancelled last minute because my partner’s dog hid one of her shoes. She never did find it! Second one cancelled due to that partner’s stomach bug. (Apparently, it’s not a great thing to be my running partner!) Thankfully, though, I powered through and went out solo. The music was great (thanks, Spotify!) and I spent some time thinking through a phone call I have later today.

So after a few false starts, I managed to make it a respectable week. What about you– how do you get your groove back and restart a cast off habit?

No More #NoBraDay | Bras for Breast Cancer Survivors from AnaOno Intimates

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One day earlier this month, I noticed an onslaught of the #NoBraDay hashtag on twitter.  I’m sure it started out with the best intentions– maybe like denim day where I donated $5 to some charity (domestic violence maybe, or even breast cancer?) so that I could wear jeans to work.  Perhaps the original intent was that women could forgo wearing a bra for a day if they donated to some worthy charity.  But most of what I saw were the tweets of women in the breast cancer community who found such “awareness” rather offensive.  I started the day telling someone that it didn’t offend me, but I understood that many women who have gone through breast cancer found #NoBraDay pretty distasteful.  But as the day wore on, I could feel my attitude changing.  For me, everyday is #NoBraDay, and I have only breast cancer to thank for that. That tasteless hashtag began to mock me, make me feel less like a “normal” woman since I can’t wear a bra. A year ago, I was so excited to ditch my compression bra and buy a pretty new bra for my pretty new breasts.  At Nordstrom, I tried on every bra the associate brought me– it must have taken over an hour– and I still left without a bra.  It turns out that my new breasts look fine under clothes, but they aren’t the same as natural breasts, so normal bras just don’t fit right.  I continued to search– from little boutique lingerie shops to mall shops to big box stores where I could choose my own options and try on every single size.  After a few months of disappointment, I gave up.  Just last week, I tried on a shirt, but since I could see Vinnie’s masterful work peeking through the white top, I passed.  “I’d have to wear a bra,” became a whole new reason not to buy a top I loved.

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Last week, the same day I returned that white top to the rack, I came across AnaOno Intimates in an article I found on twitter.  It’s a small company started by Dana Donofree, a young breast cancer survivor who was frustrated when her plastic surgeon suggested she just wear sports bras after she’d finished her reconstructive surgeries.  Trained at Savannah College of Art and Design and having worked in the fashion industry, Dana decided to take matters into her own hands, and AnaOno Intimates was born to meet the needs of women who had gone through various surgeries for breast cancer.  I immediately headed to her website which featured bras that actually look like bras and read her promise that they would really fit me.  I was oh-so hopeful, but after trying on what had to be at least a hundred bras, I worried the small/medium/large sizing wouldn’t work for me.  I filled out the contact form expressing my concerns, and almost immediately had an email back from Dana.  She asked for my dress size and the volume of my implants and then confidently pronounced me a medium.  She could tell me the sizes of the models and even other women she’d fitted, complete with details about the volume of their implants.  I could tell she knew what she was doing, and so I was giddy as I waited for my package to arrive.  I am now the proud owner of the first two bras shown here– the Alejandra (shown in black) and the Rachel (shown in ivory). The Rachel had been my first choice, I eagerly donned it as soon as I opened the package and wore it all day– I haven’t worn a bra all day without being completely irritated since my mastectomy.  But I just love the Alejandra– it fits like a dream and reminds me of the pretty push up bras that I used to wear what seems like another lifetime ago.  (Don’t let the website fool you, I almost missed the fact that the Alejandra has convertible straps– they can be worn criss crossed as shown or like a standard bra, which I prefer.)

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The site also features several bras that I consider sportier– still very pretty but reminiscent of a racerback sports bra.  They’re not likely to be my go-to, but for women who have had a lumpectomy or a mastectomy without reconstruction, these bras are genius. The light stretchy fabric and racerback shape makes them a great fit even when there is a substantial size difference between breasts.

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I have to admit that the ability to go without a bra is a pretty big perk (couldn’t resist the pun!) most days, but I found the inability to find a decent bra surprising and such a disappointment. I guess for as much as most women complain about it, there is something so inherently feminine about wearing a pretty bra, and I didn’t like that the option had been taken away from me. I’m so glad that now when I want to wear a pretty bra– or even just a plain white tee– I can head confidently to my lingerie drawer, knowing that I have some lovely options.

I know October is almost over, but through the end of the month, you can save 10% on your purchase at AnaOno by entering the code WARRIOR10.

We Heart a Great Fit | Nordstrom and the Young Survival Coalition

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It’s no surprise to most of you that I’m quite a fan of Nordstrom.  Their customer service, for one, is top notch, and that’s a big deal to me.  I’ll never forget the time that the gentleman in the shoe section was tracking down a pair of shoes for me at another store since he didn’t have my size.  It was taking a long time, so Sally and I wandered over to the lingerie section and were shopping there when he finally got it all taken care of.  He came over and found me and placed my order right there, at the “unmentionables counter.” (bonus points if you can name the movie reference for that one.)

Needless to say, after my first trip to the unmentionables counter at Nordstrom, I was a convert, never to return to the land of Victoria and her secret.  The women at Nordstrom know what they’re doing, and they will make sure to get you into a bra that fits you.  This weekend, they are partnering with the Young Survival Coalition for a fitting event, and will donate a portion of the sale of certain brands (I can’t remember now, but there are several– it’s not like you have to buy that one outrageously pink bra if you want to be part of the event!) to the Young Survival Coalition, which addresses the unique needs of women who are diagnosed with breast cancer before the age of 35.  (I was barely 35 at diagnosis, but apparently, I make the cut!)

I’m pleased to be a part of the campaign for a bit on Friday morning, and will be at the Nordstrom in Tyson’s Corner.  I’ll talk to the staff there and probably stick around and answer any questions that they or any shoppers might have.  I can see where having a pink-hued bra fitting event for breast cancer might seem like just another Pinkwashing kind of thing.  But, I have learned that the “pink” opens some doors, and so it would be silly of me not to seize that teachable moment to encourage women to make smart health choices and have a better understanding of breast cancer.

So for the details: the event runs this Friday and Saturday, October 24-25.  I’ll be at the Tyson’s Corner Nordstrom starting at 10am.  Not sure how long I’ll be there, if you might stop by, let me know!

My Ghost Boobs | Phantom Pain after Mastectomy

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So it turns out that it’s hard to find a picture online of a ghost with boobs.  Which is probably good.   I probably don’t need to remind you that I am a scientist and a writer, not so much an artist. I just felt like this needed an illustration, and this was the best I could come up with.  Of course, I’m not really talking about a ghost with boobs, I’m talking about phantom pain and sensations after my mastectomy.  My “ghost boobs.”

Most people are familiar with the concept of phantom pain after an amputation.  The amputee will feel pain in the limb that is no longer there.  It’s a pretty cruel trick that your brain plays, all those screwed up nerves that don’t go anywhere anymore just don’t know what to do, and it’s hard for your brain to keep up.  I would never compare myself to an amputee, my life is certainly not affected in the way that it would be if I’d lost an arm or a leg.  But I did lose a body part, it’s just that my prosthesis is cleverly hidden under my own skin, and curious kids in the grocery store won’t stare or ask me questions that embarrass their mothers.

So back to the phantom pain part.  As I’ve said, not only am I missing a good amount of tissue after my surgery, all my nerve endings are screwed up.  The nerves go all the way out to the skin– that’s how you feel touch.  In a mastectomy, the surgeon works as closely to the skin as possible, removing all the breast tissue and even some of the subcutaneous (fancy science word for just under the skin) fat.  So while it’s possible the the nerve endings are still there, the nerve part that goes through the breast to connect them with the brain is gone.  (That’s why the tattooing didn’t hurt much at all.)  It’s not a frequent thing, and it’s more often an itch that I can’t scratch than actual pain, but the phantom sensations are really irritating.  I don’t know if I’m actually feeling something real but can’t feel the scratching that usually helps an itch, or if there’s really nothing there to alleviate.  And any time it could be classified as pain, I’m pretty sure it’s not real– it feels like it’s coming from some place right in the middle of all my silicone.  I know there’s not much I can do about it, so I’ve just taken to saying that my ghost boob itches and leave it at that.  It turns out, I’m not the only one who’s dealt with this, lots of other breast cancer ladies I’ve met say the same thing.  What a relief, there’s nothing wrong with me, physically or mentally.  At least as far as my ghost boobs are concerned.

Talking Nipple Tattoos after Breast Cancer on Let’s Talk Live

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This morning I had the pleasure of chatting with Melanie and Rachel on the set of Let’s Talk Live about my experience at Little Vinnie’s Tattoo shop. Definitely a delicate subject, but in the past few months, I have been surprised by how many women who have gone through the many steps of reconstruction following breast cancer are unaware of their options for nipple tattooing.

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I have to confess being a little starstruck by all the behind the scenes views…

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I also have to confess about being a little nervous– I’m happy to talk to people about just about anything, but this is TV. In the internet age. One blunder can live on forever.  I talked to a friend who is a news producer, and was so thankful for her advice and encouragement. She told me not to over-prepare, just to treat it like a conversation with a friend.  I mostly tried to think of things people might want to know and make sure that I had an idea of what I might say.

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The only place I came up blank was on the “why” question.  Why would I want to talk about nipples on TV? Why do I blog at all? I’m not really interested in my fifteen minutes of fame, though I guess all the nipple talk could get me that.  As always, needing to write something in this blog (or, in this case, say it on TV) helped me realize something for myself. Thanks to my education, I had an uncommon confidence in my diagnosis and treatment. For the most part, I knew what to expect, and that made it so much less scary. Years ago, in graduate school, when I thought I would like to help educate patients, caregivers, and advocates, I was focused more on education for the sake of knowledge.  Now with the understanding of a patient, I want to educate for the sake of the patient– I want to help other women find the confidence I had.

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If you didn’t catch the interview live, never fear, it lives online for all to see.  And if you’re looking for someone to talk about her fake nipples to your elementary school assembly or church group, get in touch and my people* will get back to you.  Because I’m sure that talking about nipples in public is a highly marketable skill.

*And when I say “my people” will get back to you, I totally mean me.  If I had people, they would clean my bathroom and I would still answer my own emails.

Stay Tuned | Run Lipstick Chemo on Let’s Talk Live

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Big news, loyal, local readers! Come Monday morning, I’m totally going to be a huge celebrity. If you want to chat or have coffee, now’s the time.  I’m sure my phone’s gonna be blowin’ up by Monday afternoon.

OK, probably not.  But Monday morning, I am going to be a guest on Let’s Talk Live on NewsChannel 8, discussing  my trip to Vinnie’s Tattoo Shop and nipple and areola tattoing after breast reconstruction. (Yes, I am going to be on TV.  Talking about nipples. What a debut!)  If you have any last minute thoughts/comments/questions on the topic, let me know, and they may make it into the segment.  And if you’re local, tune in Monday morning at 11am.  (If you’re not local, I’ll be sure to post a link so you can watch the segment online.)

So tune in Monday, and check back here next week for a link to the segment and maybe a fun recap!

Single vs. Double | Contralateral Prophylactic Mastectomy (CPM)

When my surgeon told me that I had triple negative breast cancer, she indicated that because of the aggressiveness of my disease, but mostly because of the size and location of my tumor, I would probably need a mastectomy on that side.  (A lumpectomy would have left me far too disfigured to be easily corrected by a plastic surgeon.) The words were hardly out of her mouth before I asked if a double mastectomy would be an overreaction.  She assured me that it wasn’t an overreaction, though a contralateral prophylactic mastectomy– a mastectomy of the other side to prevent breast cancer– was not shown to increase my overall survival. (If I were to have had a BRCA mutation like Angelina Jolie, however, this would not have been the case. The genetic mutation in those ladies makes their risk of a new cancer in the other breast very high.)

I heard her words– it was a major surgery not without risk, and it would not make me live any longer.  I understand survival numbers and statistical significance, I know how to make evidence based decisions.  Yet the decision that I made was not evidence based. I would think just realizing that would upset me, but I know that I didn’t make an uninformed or hasty decision.

A recent publication in the Journal of the National Cancer Institute reiterates a lack of survival benefit associated with contralateral prohpylactic mastectomy (CPM), blaming a perceived benefit as the reason CPM rates have increased substantially– that women don’t understand they won’t live longer and so choose CPM. This has sparked a lot of discussion, both in the scientific community and mainstream media.  How could an intelligent woman understand that it won’t lengthen her life and still choose to have a healthy breast removed?

I remember laying on the procedure table, waiting for the bleeding to stop after my second biopsy (it turned out to be a rather bloody affair) and talking to my surgeon about my future surgery.  She told me that a CPM wouldn’t increase my survival. She may have even asked why I wanted to have a double mastectomy.  At that point, I hadn’t done any research, looked at any pictures, even really discussed it with anyone. Almost instinctively, I told her that if I were to survive this cancer, I still had a lot of years left to live.  I didn’t want to spend those years worrying about my “healthy” breast– the mammograms, the MRIs, the anxiety.  Reconstruction after a single mastectomy usually includes some sort of lift and possible augmentation on the healthy side to match the reconstructed side, but I knew that I’d likely be happier with the cosmetic results from a double mastectomy, too. She assured me that those were valid concerns, but I had plenty of time to think and consider my options.  Choosing CPM is not without a downside.  Mainly, the loss of sensation is a big deal.  I still have some nerve issues in my healthy breast that causes me a fair bit of irritation (think of that tingly feeling when your foot is just starting to fall asleep) when I wear a seatbelt or a bra.  Good thing my reconstructed breasts don’t require one of those pesky things!

With all the talk about this study, I have caught myself wondering if I made the right choice. Would I have been happier to still have one natural breast? It turns out that sometimes even a scientist has to abandon evidence based decision making.  I used more emotion than data in choosing my surgery, but I am convinced that I made the right decision for me.   I know it won’t get me any more days at the pool with my kiddos, but I like knowing that those pool days will be free of worry about an upcoming mammogram or the self-consciousness that my breasts don’t match.  We women have enough to worry about in a bathing suit as it is!

CPM isn’t the right decision for all women, and in fact, may not be the decision I’d make if I’d been diagnosed in my seventies instead of my thirties. There may be women who don’t fully understand the survival benefit (or lack thereof) of CPM, but I don’t think that it’s fair to suggest that all women choosing that option were ill-informed or made an “almost primal” decision to offer up a healthy breast as some sort of maternal sacrifice for our family.  While I know that it did not increase the length of my life,  I feel certain that my choice of CPM drastically increased the quality of my life.

Routine Appointments, Compliments, and Icky Words

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The kids and their puppy on their last day of school.

I had my annual OB/GYN exam last month in the flurry of  “appointments before school gets out.”  I really like my doctor, he was there when I went in to labor with Emma Clare, and he delivered Turner. He has the greatest bedside manner.  He’s a runner, so we’ve talked barefoot running versus cushiony shoes.  He was the first one to hear I had breast cancer– my surgeon found out when she was at a conference and was hoping that he could give me the news in person as he was seeing me that day. (Only I had already seen him when she called.) When I called his office a week later to see if I could get out of a routine post-op appointment to check that my teeny incision since I was immersed in cancer related doctor visits, he called me back right away. Of course I could skip the appointment, and he spoke to me with such compassion about my diagnosis, making sure I’d been able to secure all the appointments I needed and that I was in the care of the best physicians.

As she and I were trying to squeeze in one last “the kids are still in school” outing, I was telling Sally I had the appointment and called him my OB.  He was there when I had my babies, so that’s how I think of him.  She pointed out that I am not pregnant, nor do I plan to be, and so I should start calling  him my gyno. ??? Besides the fact that it makes me feel old, that is such an icky word. Gyno.  Ick.  And this from a woman who cringes every time I say the word “moist.” Not that I would ever say “moist” in her presence just for fun. And I would certainly never do it over and over again.

Anyway, this year when I headed into his office, he did the same exam as always, but he stopped when he got to the breast exam. “Wow,” he said. He asked about my plastic surgeon. “He did a really great job. I mean, I don’t want to be weird, but wow.” Kind of makes a gal feel good when a doctor who sees a lot of, uh, women in my situation, can be so complimentary.  (You didn’t think I was going to say “women in my situation,” did you?) He told me how happy it made him to see me looking so great– having come out on the other side of breast cancer so well.  I told him I might just need him to follow me around to say nice things.  And babies or not, I’m not calling him my gyno.