There are a lot of women talking about breast cancer and the subsequent treatment and surgery. Many of these ladies have shared the horrible truth of what cancer has done to their bodies in great detail, sharing the intricacies of a life affected by a debilitating disease. I am currently on the other side of active treatment. Chemotherapy and radiation are a thing of the past and I’m mostly finished with the reconstruction phase that follows bilateral mastectomy. Lately, however, I’ve been noticing a reconstruction side effect that is not topping the lists of reported side effects.
(Don’t worry, this is not a side effect. This is a photo of my strange bust line the night before my tissue expander exchange surgery. Dr. K had to overfill the right expander to help my skin expand and to help choose the desired size. I think it looks hilarious.)
The side effect is not a scar that reaches across each breast (though I have that), it’s not mysterious itches and pains that thread their way through my chest (I have that too), it’s not reduced strength in my chest and shoulders (yep, got that) and it’s not constant pain in my back where they took my back muscle (I’m afflicted by this one too).
No, the side effect that nobody is talking about is not any of the common side effects listed above.
It’s crumbs. Crumbs in my new cleavage. It’s food that is easily caught by my new shape.
When I get undressed at night, I’ve been noticing little dots of crumbs in my mid-bra area. I feel like I use a napkin and I’m sure I brush myself off if crumbs land on my shirt, but still, I keep noticing remnants of the day’s bounty right in between my upper girl parts.
The other night we had peas with dinner. As I brought the fork to my face, I tried to hold back a sneeze. The hold I had on my fork faltered and the whole bite of green peas went into my shirt. I looked down and I could see them there, caught between my skin and my bra. I quickly looked up. I was with my family, but luckily nobody noticed. I didn’t feel like it was something I could address at that moment since I am working so hard at modeling appropriate behavior–I mean how classy would it be if I started rooting around in there while at the dinner table? So I let the peas stay. A few bites later, two more peas jumped in to join their little green friends. Now things were getting ridiculous.
Another time I was eating (inhaling) some french fries when one fry landed in THE AREA. Absolutely crazy! I never saw this coming when they said they could rebuild me. Never in my wildest dreams did I imagine that I would gain a couple cup sizes and a place to store a snack for later. One time I stashed my phone in there. That’s tacky, but it was an emergency situation.
I do need to get a little serious though and mention that this whole reconstruction thing is not a piece of cake. It’s not like regular breast augmentation where you get to keep your breast tissue and nipples and feeling. It’s really a hollowed out area that has been refilled with what kind of feels like heavy water balloons. There isn’t a lot of feeling left in the skin that I got to keep, but there are occasionally shooting pains somewhere in there and occasional itchiness that is somewhere down deep. The itchiness leaves me so frustrated. I want to scratch it, but it can’t be reached from the outside. So bizarre. The girls aren’t exactly symmetrical either–but can be called upon to “pull together” when a neckline calls for that type of thing. The other really weird thing is the left side that has the muscle and skin from my back. The way the scarring turns out it looks like I have a giant eyeball shape over there. (I had latissimus dorsi flap surgery).
Women who go through breast cancer treatment often face seeing themselves as non-feminine. Losing hair and your breasts? And then add early menopause? For me, that was pretty much all the ingredients that made me a girl. At some point, I just felt like this asexual being that had no true gender identity. People could counsel all they wanted on the fact that it was all temporary, but when I was living it, there was very little hope that my body would ever be right. The other thing that had to be realized was the fact that things would never be the same again; things would never be normal. Normal for me would be my long, straight hair and natural bust line. (This is where I should say something and refer to it as my new normal. New normal is as bad as breast cancer journey. I don’t subscribe to either of those cliches.) The body I have now has curly hair and reconstructed breasts that create a space for catching crumbs and peas. I’m happy with how things are turning out, but I’m still not considering all of this as normal.
(This is where this post shall end–there’s a piece of granola digging into my right breast.)
Ooooh girl, check me out! I have a date! (A calendar date, not a laugh-nervously-wondering-what-to-say-next date.)
In the cancer world, many people celebrate a day they call their “cancerversary”. This is the anniversary of something significant in your cancer travels. From what I can gather, many people use the date of their diagnosis as the big day. One lady told me that you should celebrate this date of your diagnosis as your cancerversary. She said that you are considered a survivor as of that date.
Now I am a person who LOVES combining words to make one super word, so I should love “cancerversary”. I have a closet yoga room which I have dubbed the “cloga” room. Then there’s the time I saw a school bus come to a screeching halt, thereby missing a near bus disaster, or “busaster”. Those little packets you buy at the store to make sauce? Clearly those are sauce envelopes, or “saucevelopes”. But the cancerversary term just hasn’t resonated with me. I have put a lot of thought into this. An anniversary is a day that happens every year, thus a day of remembrance and many times, a day of celebration. Being the deep thinker that I am (or think I am–that pesky chemo brain still haunts me), I just couldn’t bring myself to celebrate when my one year diagnosis of cancer anniversary came around. I let it roll by quietly without fanfare.
I hate the day I got the call. I have a vivid memory of that 10:00am call on a sunny day in October 2011. Sometimes I get a little choked up when the sun shines through the blinds to land on my dining room table, the place I sat and listened to the news that would change my life forever. I don’t really want to have that burned into my brain. I want that memory to quietly fade away and leave me alone.
Along with celebrating the diagnosis date comes being regarded as a survivor. I never really felt like a survivor either. I know I am still here, but the surgeries, chemo, radiation, and side effect after side effect really made me feel like I was barely hanging on. Surviving, yes, but with a poor quality of life. I kept feeling like I needed permission to be called a survivor, like doctor permission.
Well, all of that cancerversary and survivor mess cleared up when I visited Dr. D on July 3rd.
I pulled into the parking lot of Dr. D’s building and parked to the extreme right of the entrance, just like every other time I went there. I walked into the building and went straight to the elevator, where my hand hovered over the 2nd floor and 3rd floor buttons–as usual, I could not really remember if I should hit 2 or 3. I chose floor 3 and when the doors opened, I quickly peered around the corner to see if the Texas Oncology door was indeed on the third floor. Like every other time I played this game, the office was really there. I walked down to the office, but stopped to take a bathroom break. Second stall from the left, first sink to the right. This time I looked into the mirror and I marveled at how I looked. Every time I go to this office, I look a little different: from long straight hair, to hair falling out, to no hair, to stubble, to bouncy curls…what a journey. From the restroom, I step across to the office to sign in, pay my $50 copay ($50!) and sit to wait for them to call me for lab work. Once called, I head straight for the chair by the window and offer my right arm. In staying with my typical thought process, I marveled at the amount of blood they take. 6 vials? Really? That seems like too much. Next I go down to the exam room where I wait for Dr. D to come see me. Blood pressure, temperature, review of meds, same routine as always. So then we begin to talk. I really like Dr. D because he is patient and kind and funny. I can count on him to offer the same support and smart decisions every time I see him.
But this time, he said something that I didn’t even realize I was waiting for.
“Well,” he said, “I think you’re pretty much fixed.”
On the inside, I had one of those fluttery little OMG moments. On the outside, I kept my usual I’ve-got-this composure and calmly replied with a nod. He ended our appointment with, “I’ll see you in six months.” I walked out of the building in a surreal state. Fixed? That makes sense to me, because I sure was broken for a while. Fixed works for me, better than cured. I drove away thinking about celebrating, but I didn’t know what to do. Fifteen minutes into my 30-minute drive home, I burst into tears while singing along with my the most lamentful songs I could find in my collection. These were good tears though, relief the being the biggest emotion ruling my thoughts.
Of course, Facebook was where I announced Dr. D’s decree, and my dear friend from high school suggested that I celebrate with wine or even a new purse. She is a genius, right? Plus, she’s a real doctor, and doctors are smart and know how to heal people. If she is prescribing a new purse, then I should probably take care of that right away.
So now I have a date. Exactly 18 months after my diagnosis (October 3, 2011), I have a day to look forward to. July 3rd will be my date. I don’t know if I can call it a cancerversary, but at least I have a date. My I’m fixed anniversary. My fixederversary.
If truth is beauty, how come no one has their hair done in the library?
Losing my hair to cancer was so hard for me. Losing my breasts didn’t mean as much as seeing the slow loss of my carefully crafted locks fall to the ground. The day I crumpled in the parking lot of the medical center where my biopsy was performed I knew that I had cancer. I did not have test results yet, but I knew. I also knew that I would lose my hair. Nobody had said anything about chemotherapy, but I knew. The morning after the biopsy, I woke up in tears and told my husband that I had to get my hair done in the next few days. I was facing a cancer diagnosis, I had some sixth sense that I was going to lose my hair, and I needed to pay over $100 to get my highlights revved up. Makes perfect sense, right?
Even though I had surgery to remove the tumors, the surgeon was unable to get perfect margins. This paved the way for chemotherapy to enter, stage left. Dr. D said that not everybody loses their hair to chemo, but that it was rare that people didn’t. His voice got a tiny bit quieter when he said, “…and you have such beautiful, long hair”.
A few weeks before I was to begin chemo, I went in to have my hair cut, which I chronicled in Hair Today, Gone Tomorrow (pun intended). This was so smart. It was hard to see my hair start to fall out, but it would have been worse to have long, straight stands on my pillow each morning.
My hair began to fall out about 12 days after the first chemo infusion, and I was terrified and fascinated to the same time. I could pull out giant clumps of hair and still have more left on my head. I had a lot of hair! At work, I would have to ask colleagues to check my back for rogue hair loss sticking to my back. At one point I wore hats to try to contain the shedding. Finally, it was time to shave my mane (Good-Bye Hair–or–Hello For Next Time).
Stupidly, I had an irrational fear that my hair would never grow back. There are dark corners of the Internet where people say this has happened, and of course, I imagined the same might happen to me. This time last year, when I was going to radiation every day, I began to see some stubble grow in. My eyelashes and eyebrows wouldn’t (and still haven’t) made a big return, but the stubble began to lengthen ever so slowly.
Right now, I have a lot of hair. Every bit of it is curly and thick, but it’s hair. You will often hear me say, “this is not my hair,” because it really isn’t. I was not a curl laden kid before. In fact, I used to spend over 30 minutes each morning adding curl with my trusty curling iron. Although I get tons of compliments on this curly nest, I have been known to say that I am on a quest to grow my hair Rapunzel length. I miss my pony tails. I miss running soft, silky hair through my fingers. I miss gathering my hair in my hands after my shower to squeeze the last drops of water out. I miss flipping my hair off my shoulder–an act I still perform unconsciously several times per week. I have no hair to push back, but the hair flip was/is part of my natural gestures.
I do not doubt that I will one day claim this hair as my own. The curl will probably fade away as will the pain of losing a delicate piece of outward beauty. The simple truth is that for me, hair loss equaled loss of control, loss of beauty, and loss of femininity. The complex and undeniable truth is that I know that all of these things can be recaptured with time.
‘Beauty is truth, truth beauty,—that is all
Ye know on earth, and all ye need to know.’ ~Keats
I’m not sure if there is any way to really prepare for mastectomy surgery. There’s so much you don’t know, can’t know when you go in for such a procedure. One thing you can count on, however, is the fact that you will probably go home with at least one drain snaking its way out of your body.
Before my surgery, I read about drains and the fact that I would need special pockets inside my shirt to carry such things. I did a little research, but I wasn’t really prepared for the truth. Upon waking from surgery, I found that four Jackson Pratt drains were attached to my body, two on each side of my removed breasts/inserted tissue expanders. After my lat flap reconstruction surgery, I had three drains on just my left side. Both times, it was so odd to see plastic tubing trailing from under my arms and even weirder to see these bulbish things at the end slowly filling with red liquid gunk.
JP drains are used to help drain bodily fluid from surgical sites. The bulb can be folded in half and capped, which allows fluids to be sucked out of the body, through the tube, and into the bulb. The drains have to be “stripped” several times per day at first. This means that you or your caregiver–probably your caregiver since you can’t really use your arms–must slowly squeeze the tube from where it pokes out of the body down to the bulb, thereby coaxing as much ick out as possible. Then you measure the amount of fluid and enter it into a little spreadsheet. Dealing with drains never rally gets easy, but it can get funny. I’m sure you can imagine the jokes from my husband:
“Doctor’s orders–strip baby!”
“Kendra, time to strip…strip it all.”
“This isn’t what I meant when I wished for you to start stripping every day.”
Since these tubes and grenade shapes are hanging from your body, you need a way to carry them around once you’re mobile. When I went in for the mastectomy surgery, I had already purchased a clever little package of stick-on pockets from Pink Pockets. They are soft, flannel squares that you can stick inside your clothing, creating your own recovery garment. This product is created by Diane LeBleu, herself a breast cancer survivor. Brilliant!
After reconstruction surgery, I was offered a Heal in Comfort shirt by the Breast Cancer Resource Center. This shirt is perfect for recovery! Breathable fabric, velcro front for easy opening, sewn-in pockets, and a sassy little logo on the front.
This shirt is also designed by a breast cancer survivor, Cherie Mathews, who created it to “help women heal in comfort and dignity after surgery in their battle against breast cancer”.
From the Heal in Comfort About page: Standard post-operative instructions call for “loose-fitting clothing”, which had no accommodations for her drain tubes and limited arm movement. Her situation made her angry — “I didn’t have the right equipment to go home in, if a sprained elbow gets a sling to heal in why isn’t there helpful equipment to heal in after a mastectomy?”
I love this. She encountered a big problem, but rather than lament and complain about it, she did something proactive! That’s smart.
In addition to a stripping routine and special clothing, you will need a lanyard and some safety pins. You might be recently surgurized, hairless from chemo, or drugged up on pain meds, but that’s no excuse for being a dirty birdy. Showering with drains is not possible without some kind of holder–you can’t possibly juggle the drains with soapy hands. I put an old lanyard around my neck and pinned the drains to it, thereby creating a surgically chic necklace.
Drains suck. They really suck (seriously…they suck extra fluid out of your body). When you get them removed–which happens during a quick office visit–there is a feeling of great freedom. It’s weird when they come out though. I swear my last drain was somehow coiled all the way down to my legs. Dr. K kept pulling and pulling, reminiscent of that handkerchief trick.
The most grown-up way to cope with your drains is to view them as one step closer to healing, a minor inconvenience as you proceed along the highway to health. The other way to cope with drains is to loathe them with all of your being, moaning in pain every time the stupid tube is touched in the littlest way. Whatever way you choose to cope, you need a friend to help you strip, some pockets in your shirt, and a lanyard.
On November 3, 2011, I endured bilateral mastectomy surgery. Fast forward (well snail crawl, really) to March 7, 2013: I finally had my exchange surgery. Tissue expanders were exchanged for smooth round high profile gel breast implants–and I have an ID card to prove it:
This was pretty major surgery (I chose the latissimus dorsi flap procedure) that had me in the hospital for two nights, but it was NOTHING compared to the agony of bilateral mastectomy. I even got the best room in the hospital! I lucked in to the corner room with two (two!) windows.
Here are the sames and differents:
Waking up from BMX: Burning, searing pain, inability to communicate, pretty sure a truck filled with bricks was sitting on my chest. Extreme fear.
Waking up from exchange: Pain, ability to ask for food and drink, just a lot of bricks on my chest.
Later that day (BMX): Could not drink, even through a straw, without help. Jeremy had to apply my chapstick. Arms did not work at all. Catheter.
Later that day (Exchange): Laughed when Jeremy tried to apply chapstick for me, asked for special bottled water, because NO to tap water. No catheter, immediate change into my own PJs. Checking email and Facebook.
Arriving at home (BMX): Going up the stairs to my bedroom was true torture. I could not greet my kids. Getting into bed was scary. I wasn’t able to venture out of my room for days. I felt truly, hopelessly full of pain…and more fear.
Arriving at home (Exchange): I hugged my kids, sent air kisses to my doggies. Jeremy helped me up the stairs, but I could have done it myself. I felt pain, but I also felt strength. Able to go up and down the stairs fairly quickly.
Scars (BMX): You know I have scars. Permanent marks on my body and heavy, permanent marks on my soul.
Scars (exchange): I ended up with scars this time too. But a week before this surgery, I got a special tattoo on my right foot. I love symbolic stuff like this…no fear, standing strong, etc:
It is tough and wonderful to compare these two experiences. I don’t think words can describe the horror of that first surgery. I hated it and I hated that I had to recover for so long. I also felt like I had nothing to look forward to, especially when the surgeon called and said that my margins were not clear. I subjected myself to this awful procedure and they didn’t even get everything? That sucked. It sucked big time. But this time, even though I’m not quite finished, I feel like I’m finally on the downhill side of all of this cancer stuff. I feel like there is less to have to plan or think about, and that feels great. My new, albeit fake, upstairs section feels good. I learned that some ladies call these things “foobs”, and I think that’s kind of funny. My recovery time has been easier and shorter, and I like that.
The other thing going through my mind as I compare these two surgeries is the state of my mental and physical state. I think the two surgeries are pretty rough, but I wonder about the fact that I am springing back so quickly this time. I’d like to think that I’m much tougher than I was before: mastectomy, chemotherapy, hair loss, radiation–that shit will either kill you or make you stronger. I don’t recommend cancer as a way to build up your pain tolerance and inner strength, but it sure works.
I’m not finished with surgeries or with treatment, but I can see the end.
For now, I have been rebuilt.
My oncologist, Dr. D, decided that it would a good idea for me to get a chest x-ray and baseline bone density test. I decided to avoid the issue for a little over a month, but the nurses were relentless in tracking me down. So in I went for more poking and prodding by medical professionals.
I checked in and was led to a small room where I was asked to change into a lovely hospital gown and hospital pants. I threw them on and made my way to the bone scan room. I reclined on a hard slab and watched as the machine whizzed and purred over my body. It was over in just a few minutes. From there we were off to the x-ray room.
The nurse stopped suddenly and said, “Oh! Let me tie your gown. Your backside is open to everybody!” I stopped and let her tie it, but I also smirked. I immediately thought about different things are now. Modesty? Not so much. After being squeezed and squished by so many people, I have no concerns with whipping my top off and baring it all. In fact, I think the doctors waste time when they leave to allow me to change into the gown. I suppose I might feel different after being fully reconstructed, but right now, my upstairs is an open book.
We went into the x-ray room and I had my upstairs zapped. The technician stepped out so I could get dressed and I snuck over to the computer to take this picture:
The results came back from both tests a few days later. The chest x-ray showed nothing but health. I passed! The bone density didn’t come out as I had hoped though. Dr. D explained that I have osteopenia, which is a precursor to osteoporosis. Great. Bad bones don’t run in my family and I’m kind of young for this condition, so it looks like the chemotherapy and radiation left me with some lingering side effects. Sigh. I hate that cancer treatment saves your life only to mess up your life.
The treatment for osteopenia is diet and exercise, which is also the treatment for cancer, healthy weight, mental health, longevity, heart disease, sleeping well, allergies, and hangnails. So the only way to get better is to be thin and muscly. Damn.
I saw two docs this week: Dr. D, my oncologist, and Dr. K, my plastic surgeon.
Oncologist Visit: SCORE!
Plastic Surgeon: Dammit, dammit, dammit.
Dr. D checked a bunch of stuff and the results are pretty good. My white blood cells look normal and my tumor markers are staying down. My estrogen levels have risen about ten points, but he’s comfortable with the level right now (Rising estrogen could be potentially bad since the tumors I had were being fed by estrogen). So I will continue with the current course of hormone- blocking Arimidex. He’s sending me for a baseline bone density test and a chest x-ray, and if those look clear, then I don’t have to go back for 6 months.
The visit with my plastic surgeon went exactly how I didn’t want it to go. >:-/ Before I even changed into the comfy paper shirt, he looked serious. “Why don’t you change so we can talk about your options.” Awesome. Talking about my options could only mean that I was about to get news I didn’t really want. I reluctantly changed and hopped (moped) onto the exam table. He came back in and asked me to stand up. (Oh, I forget to mention, my husband was there too. There is nothing weirder than standing topless in front of another man’s face while your husband looks on!) Dr. K looked at, prodded, and poked at my current upstairs situation. Then he kind of squished my sides, touched my back, and asked to see my belly. He added a little squeeze there and then asked me to sit down. I sat down quickly and sat up very straight (because good posture will help in a situation where you get bad news). He said, “There just isn’t enough skin on your left breast for regular reconstruction. The radiation caused it to shrink too far. But there are some other things we can do.” It was a good thing I was sitting up so tall, because then I had enough room to sink down and feel defeated.
********Can I just be vain for a second? You know what? Cancer sucks and it’s horrible and I hate it. But before cancer I had always privately dreamed of breast augmentation. Then I was diagnosed with cancer and although it has been awful, my secret little victory was a bigger set up top. Finally! Cleavage without wearing a corset! Bathing suit tops that don’t have that waterfall of fluid due to push-up pads! Reconstruction after mastectomy wasn’t going to be perfect and the scars would remain until forever, but at least I would be able to work on that hourglass shape. I have the curvy hips, the small waist, and with proper reconstruction, I would have the busty curves too. Now I know that breast size doesn’t make the woman, and we’re all still the same whether we have breast or not, but I’m serious about my femininity. For me, being feminine starts with your attitude toward yourself and others–and if you look good while doing it, you’ve got the whole package. I need to be thankful for my life, because no matter what I look like, I’m still here to be a wife, mother, and educator. And I am thankful for all of that…I just want to have my cake and womanly curves too.********
Dr. K started to explain the two best option for my troubled breast area. The right side is perfectly fine. I still have a tissue expander in there and I will be able to get normal reconstruction: just an implant and I’m outta there. The left, however, is a shrunken mess and my two options are the dreaded flaps:
Option #1: DIEP—A DIEP flap is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), and the skin and fat connected to them are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy without the sacrifice of any of the abdominal muscles (I am calling this one the belly flap).
Option #2: Latissimus Dorsi Flap—An oval section of skin, fat, and latissimus dorsi muscle is detached and slid around through a tunnel under the skin to the breast area. Blood vessels remain attached whenever possible. The tissue is shaped into a natural-looking breast and sewn into place (this one shall be named the back flap).
Belly Flap pros: tummy tuck (that I don’t really need)
Belly Flap cons: slicing open my abdomen, 4 days in the hospital, giant scar on my abdomen (so no to nude photo shoots), the teeny tiny stretch marks that are left over from pregnancy will be transferred to my breast, requires two surgeons, I don’t really have enough belly fat to make anything worthwhile.
Back Flap pros: smaller scar, shorter hospital stay, your latissimus dorsi muscle isn’t all that important. I told Dr. K that I thought it was an important muscle and he said, “not unless you are an extreme athlete”. (Wow, first I get the news that I can’t have the regular surgery and now I find out I’m not an extreme athlete? Such a cruel, cruel world!)
Back Flap cons: scar across my back (meaning I’ll never go back to wearing those backless gowns I’m so fond of), weird sensations–since the blood vessels stay intact, if someone touches your back, you’ll feel it on your front, weird recovery– how do you sleep with ouchy spots on your back and on your front?
So after discussing all of this, I told Dr. K that I needed time to think about it. He agreed, filled my right tissue expander with more fluid, and I left. (Now I can be described as small, hard grapefruit boob/big, soft, oddly-placed, slightly in the armpit boob.) Luckily, I was able to meet with some fabulous cancer people the next day who had been through the whole process or were about to. Getting first-hand advice was really helpful and I feel much calmer about making a tough decision. Those Pink RibbonCowgirls (a local breast cancer support group) really know how to make everything seem not so scary.
Don’t worry though, I’ll be sure to keep you abreast of what’s flappening. 😉