I have a friend I met through this little blog. Like I, she lives in a suburb of this vast, sprawling city, although we are on completely opposite ends of the city — an hour’s drive apart. In this city of more than 2 million people, we both had the same surgeon for our reconstruction. She found this little blog while researching our shared doc. Small world, huh?
M and I have gotten to know each other in short order, as is the case when strangers are bound by the worst-case scenario. Instead of discovering that we both like to hike or collect Troll dolls or any number of commonalities that bring people together to forge a friendship, we’ve bonded over things like post-surgery infections, failed surgeries, broken promises and shattered dreams. We’ve traded war stories, vented frustrations and showed each other our scars — the ones on the outside, that is; the ones that can be seen by others.
Our most recent conversation was about how our reconstructive surgeries didn’t exactly turn out the way we expected. We’ve covered this topic before, and will likely cover it again. This most recent conversation coincided with this article in The New York Times following Angelina Jolie’s announcement that she had a prophylactic mastectomy. While Jolie has received a lot of praise, the article says that some breast surgeons worry that the general public will think that reconstruction following a mastectomy is “a quick and easy procedure” and that most people don’t fully understand what’s really involved. I certainly didn’t. I do now. Man, oh man, I do now.
The Times article elaborates: “For most patients, breast reconstruction requires an extended series of operations and follow-up visits that can yield variable results. Some women experience so many complications that they just have the implants removed.” While not all reconstruction involves implants, as in the case with M and me, that’s the most common version, and as long as one doesn’t suffer complications like M and I did, it’s a straightforward process.
It is not, however, a boob job. Roseann Valletti was interviewed for The Times article, and reports that “she is uncomfortable. All the time. ‘It feels like I’m wrapped up in duct tape,’ said Mrs. Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction. They look terrific, to the eye, but it’s never going to feel like it’s not pulling or it’s not tight. It took me a while to accept that. This is the new normal.”
Ah, yes…the “new normal.” M and I have discussed this “new normal.” A lot. And we’ve both come to the conclusion that we don’t like it. Not one bit. We’re so over the “look on the bright side” mentality that is forced upon us cancer patients, especially those of us “lucky” enough to have “the good kind” of cancer. Newsflash, people: there is no good kind. There are degrees of shittiness, but none of them is good.
M and I have learned the hard way that reconstruction after a mastectomy is not a simple thing, as some people may have inferred from Jolie’s experience. As stated in The Times: “Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result. A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.”
Running through that check list, I can say yes to bleeding, infection (not just risk of, but full-blown), scarring, persistent pain, and additional incisions. No anesthesia complications, no implants (ruptured, leaky or otherwise), or upper quarter dysfunction, although I certainly do have all of the symptoms listed, so perhaps I do have it and just don’t know it. Add to that list less-than-satisfactory aesthetic results, intermittent lymphedema, frustratingly painful scar tissue, divots in both armpits from lymph-node removal, unholy difficulty finding a bra that fits, PTSD, a near-uncontrollable aversion to antibiotics, and discomfort when reaching or stretching my arms.
Dr Deanna Attai, a mainstay in the online breast cancer community, was interviewed for The Times article and said, “We do not yet have the ability to wave a wand over you and take out breast tissue and put in an implant — we’re not at “Star Trek” medicine.”
Rats. I like the idea of just waving a magic wand and getting “Star Trek” medicine. Although, if there were such a magic wand to be waved, I’d wish not for “Star Trek” medicine, but for never having had breast cancer in the first place.
I’ve been remiss in blogging the last few days. I could be a big baby and say I haven’t been feeling so great, but I won’t. Even if it’s true. Cancer. It’s always cancer. Seems that nary a day goes by without someone I know or a friend of a friend being newly diagnosed. It would be easy to get bogged down in all things cancer, but I won’t.
Something bad happened last week. Not “recurrence” bad, but side-effect bad. Something I’ve been scared shitless of since learning that this foul thing even exists. Until last week, said foul thing had not gotten ahold of me, but then on Wednesday last, everything changed.
The dreaded swelling of a limb following surgery, particularly surgery in which lymph nodes are removed.
Since my mastectomy 18 months ago, I’ve been on guard against the dreaded lymphedema. I have a fantastic lymphedema specialist, Tammy, who has become not only a vital member of my health-care team but also a great friend. Visiting her is like a trip to the spa — serene setting, trickling water fountains, dim lights, soothing music, and lovely & caring women. It’s a safe haven among the shitstorm that is breast cancer.
I started seeing Tammy as a preventative measure all those many months ago, and while I never had lymphedema, she worked her magic on my scar tissue and rough spots after my surgeries. With her help, and that of office manager and “salt police” Janice, I’d educated myself about lymphedema and had, until now, been successful in preventing it.
All that came to a screeching halt Wednesday. The proper care, the education, the prevention, the vigilance — gone. Just gone. My left arm swelled up like a balloon and felt heavy, tingly, tender, and sore. I was scared.
The thing that scares me so much about lymphedema is that it can come out of nowhere, months or years after surgery. And it can be permanent. The last thing I want after being handed a cancer diagnosis at age 40 is to go through the rest of my life with a balloon arm. That would put a serious crimp in my tennis game.
Luckily, Tammy and her staff of lymphedema slayers were on the ball and treatment commenced right away. I got to experience the joys of “the pump,” in which the offending limb is encased in a stockingette, then stuffed into a huge, padded wrist-to-shoulder sleeve reminiscent of the padding used to train police dogs, then encased in a plastic-y sleeve attached by thick cables to a machine that squeezes the limb rhythmically. The idea is to squeeze the excess fluid out of the limb and guide it back through the battered lymph system to then be filtered out of the body and released into the atmosphere, hopefully never to be seen again.
The plan was to rest (egads), avoid lifting anything with my left arm (bye-bye strength training), and wear the compression sleeve (oh so fashionable, and yet another palpable signal to the world that there’s something wrong with me). Pump it every day, drink as much water as I can hold and then some more, and hope it goes away. After laying low, being a gimp, wearing the sleeve, pumping and adding some k-tape, and drowning my innards 5 days, there is some progress. The swelling is down, but not totally gone. I want it gone. IMHO, 5 days is more than enough time for it to be gone.
Y’all know how much I loooooove being a patient, enduring complications, and being sidelined.
This latest complication and sidelining was rather tough. Mentally more than physically, which is a change. I guess it’s good to shake things up every now and again. The getting back to “normal” was getting kinda boring, and the idea of finally putting this cancer experience behind me probably was a pretty stupid one. Why not insert a wrench into the plan?
There are lots of things that aggravate the hell out of me with lymphedema. Lots of things. First and foremost is how rudely it interrupted my foray back into my “normal” life after the latest surgical procedure. I’m a busy girl and an impatient girl, so the “stop-start-stop-start” nature of getting back to “normal” after cancer and in between the 8 procedures I’ve had is trying. Just as I was getting back to “normal” after the October revision and hitting it hard at the gym, the balloon arm strikes. In fact, one of my fellow gym rats was just telling me, the day before the lymphedema arrived, that it looked like I was back. As in, back to my usual workout routine and getting stronger. Two weeks in a row, I’d had 3 hard workouts in a row. I was actually starting to see some progress, and with no more procedures on the horizon, my future in the gym seemed quite bright.
I should have known it was just a tease and wouldn’t last. I should have realized that cancer and its many ugly aftereffects will always have a hold on me and will get the better of me. I should have recognized that no matter how hard I work and how many things I do right, my arch nemesis will forever be skulking around in the shadows, waiting for the perfect time to shit all over me once again.
In addition to battling cancer and a nosocomial infection, I’ve also been busy battling plantar fasciitis.
The PF preceded the BC, and while not as nasty–and certainly not life-threatening in any way–it’s a major drag. My feet hurt all the time. All. The. Time. Maintaining my busy-body active lifestyle is pretty tricky with feet that hurt All. The. Time. It also severely limits my footwear. Cute shoes are pretty much out, as is going barefoot. I haven’t resorted to orthopedic shoes, but I’m not out of the woods yet, either. I have custom orthotics that go in my tennis shoes (don’t be jealous), and if I’m not wearing my tennies, I’m in my very dear Cole Haan flip flops or my not-s0-cute but cushy crocs flip flops. Thank goodness I don’t work in an office that requires closed-toe, pinchy shoes. I’d have to quit or get fired. Probably option #2.
I’ve seen a foot doctor, I’ve tried herbal remedies, I’ve taken copious amounts of RX anti-inflammatories, I’ve iced and elevated and slept in a splint. I had high hopes that while recovering from The Big Dig and taking several months off from tennis and most of my daily activities beyond laying in bed bemoaning my pitiful state would provide some respite from the foot problems that plague me. Alas, it did not. In fact, having foot pain while lying in bed doing none of the active things I want to do gave me more about which to bemoan.
My tennis buddy and dog-spoiler extraordinaire Christy had the answer to my problems. Dr Scott Kelly of the Airrosti Clinic. I need another doctor in my life about as much as Lindsey Lohan needs another bad-influence friend. The thought of adding yet another doctor my circle of docs did not appeal to me one little bit, but desperate times….
The Airrosti Clinic uses an intense treatment model that involves some serious hands-on time with the doc. And when I say hands-on, I mean he’s gonna put his hands on your tenderest injured spot and mangle the hell out of it. For real.
See, fascia is connective tissue that covers most of our body. It covers the different muscles, blood vessels and nerves “much like plastic wrap holds the contents of a sandwich together,” as it was explained to me. Problem with fascia is it’s everywhere, so your chance of injuring it is great, and it has little or no blood supply, so your chance of healing said injury is not great.
That’s where the laying of hands comes in. Dr Kelly gets his long, strong, mean hands into the damaged fascia and starts kneading it like bread. Then stretching it like taffy. Then punching it like a speed bag. All the while laughing maniacally at the moans, cries, screams and curse words coming from the patient. (Ok, he doesn’t really laugh maniacally but he does seem to enjoy his work very much, and when I showed him the line of bruises on my calf after his first hands-on treatment he smiled with obvious pride and said that’s his signature, and if he could sign his name in bruises, he would. That’s one autograph I don’t really need but apparently am gonna get. Repeatedly.)
When I met him last week, he grabbed ahold of my foot and said he could diagnose me in 30 seconds. I said I didn’t realize this was like speed-dating. He rolled his eyes, then told me that he could cure my PF in 3 treatments. I asked if he could also name that tune in one note. Why oh why don’t any of these doctors get my humor??
As skeptical as I was, I have to say that after the mangling, kneading, stretching, punching, and cussing, I could tell a difference. It took a while for the shock and trauma to subside, but once it did, I could tell that we were getting somewhere. The day after my first treatment, I got out of bed and walked barefoot on the tile without pain — something I hadn’t done in at least a year.
There’s homework, of course, that involves standing on a golf ball and rolling the ball all over the bottom of my feet, paying special attention to and lingering on the really tender spots. There are also a couple of exercises involving a 36-inch by 6-inch foam roller.
And then there’s the K tape.
Kinesio tape. In every color of the rainbow, according to the image on ktape.com. The website is pretty glowing about this product:
“It’s designed for Professional athletes, Olympians, and active people world-wide who take health & fitness seriously and who refuse to stop training, playing, or living life active and free. The design is minimalist, the results are magic.”
That’s me: I refuse to stop training playing, or living life active and free. Bring on the magic!
I’d had K tape before, when I was treating my PF myself, and again when I started seeing my lovely lymphedema specialist, Tammy. She’s a certified K tape master. She’s been using K tape on my post-mastectomy chest and now on my post-reconstruction belly. I’m a believer in the magic of K tape. As part of the scar-tissue-management on my 17-inch-long incision on my belly, Tammy puts a couple of strips of K tape and we wait for the magic happen.
So when Dr Kelly wanted to tape my feet after my first treatment and asked if I’d ever heard of it, I said as a matter of fact, I have some on my belly right now. We hadn’t been through the whole song & dance about the BC business; I was hoping to keep the BC beast out of the sports medicine arena. Well, the elephant was certainly in the room when I mentioned I had K tape on my belly. In for a penny, in for a pound, and I had to explain.
Yes, those are bruises just above the shorter piece of tape. If you’re fluent in the language of torture, you can probably tell that that’s how Dr K signs his name.
Dr Kelly seems to be a bit competitive, and wanted to tape me up real nice so that Tammy, the other K tape master, would approve. She did. And then she took it a step further. I guess she’s a bit competitive, too.
Instead of just using a couple of strips on the scar tissue on my belly, Tammy used a new technique she’d just learned at a K tape workshop. Could this be Turf Wars part deux?
I can’t wait to show this to Dr Kelly. The battle of the K tape is on!
I hope neither he nor Tammy sees this K tape image and gets any big ideas:
I’m ok with the crazy blue racing stripes on my legs & feet, and with the Frankenstein pink on my belly and over my new belly button, but I’m drawing the line at a pink ribbon made from K tape. No thanks!
Yes, I’m still celebrating my birthday. When I showed up for my scar-tissue-management appointment to see Tammy, my favorite lymphedema specialist, she and Janice had decorated the office for me! I saw the Happy Birthday banner on the front door and wondered if my timing was out of whack, because Janice had her birthday in February and Tammy’s is at the end of the summer. Imagine my surprise when the decorations were for me!
Tammy insisted she get a picture of me lying on the confetti. I love that you can see her, in her white top, in the mirror behind me. She’s something else.
One of the pleasant things to come from this “cancer journey” is the relationships formed with health-care providers. Tammy & Janice fall into the category. Hell, they define this category. When I first met them post-mastectomy, minus some lymph nodes and worried about how their absence would affect my tennis game, these two ladies took me under their wing and provided the balm to my battered soul that comes from pure human kindness. We’ve gotten to know each other very well over the last year, and they’ve become not only providers but also friends. So yes, the birthday celebration continues, and I will continue to ride the b-day train as long as humanly possible. Once my liver says “uncle,” I’m out. But until then, rock on.
Even with all the birthday revelry, I didn’t want to get too far away from my latest visit to Dr S. I’ve been so busy celebrating my birthday that I almost forgot to report on my visit to my all-time favorite surgeon in the Entire World. I saw him the day before the celebrating began, so I’d better tell ya about it now before the details become entirely too fuzzy to relate.
Well, the details of the visit aren’t as important as the fact that he and I have made some major, major break-through progress. As you loyal readers know, Dr S & I have gone round & round on a few things in the past, and we’ve had some pretty good arguments. The Turf Wars continue to amuse me. But at the end of the appointment, with the exception of one hellacious visit last summer involving Sucky during which he almost saw me cry, we part on friendly terms and hold a lot of fondness for each other in our hearts.
So what was the progress, you may ask? When he told me to pull my pants down, so he could look at my belly scar, he said please.
Yes, you read that right: he said please. All of his own volition. Without being prompted. Without the Mexican stand-off that usually occurs when he wants me to comply but I refuse until he shows me some manners. A little wining & dining before we get down to it, if you will.
That is some major progress. You may remember the time in which I asked him to say please and he replied that he doesn’t have to say please because he is the doctor (cue the fanfare music here). I pretty much laughed in his face and said he may be the doctor, but I am the patient (cue the even louder fanfare music here) and I will not do what he’s asked until he asks nicely.
I reminded him of one of the tenets of my growing-up years: It’s nice to be important, but it’s important to be nice.
I’m pretty sure he really liked that one, a lot.
Next stop for the birthday train: happy hour — my favorite time of day.
A gathering of dear friends, some yummy food, and a well-stocked ice bucket makes for one happy birthday girl. Thad & Yvonne always throw a great party, and last night was no exception. We toasted with a Mumm rose, and broke out the beautiful orange box so the Widow could join the party. She’s always the star of the show.
Quite a nice grouping for the birthday happy hour. The food was delish, as it always is at Chez McLemore. Yvonne’s tableside guacamole would be at home at any of the finer Mexican restaurants in our neck of the woods. Keith & Jill’s deconstructed Greek salad crostini made my heart happy and made my tummy say “thank you!” The hand-made tortillas and grilled shrimp added the last dash of supreme bliss that enveloped our patio happy hour. The fruit crostada was bursting with blueberries and anchored with peaches, all the while surrounded by a buttery, flakey, turbinado-sugared crust.
But the very best part of an overall-exceptional evening was this: being surrounded by friends who make every meal a feast.
Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.
I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.
I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.
Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).
Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’ notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.
One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.
I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.
All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.
Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.
and Macy & I pampered ourselves with a Chinese foot massage.
I squeezed in as much time as I could with my girls
Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized
I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.
Keith’s crab towers were chock-full of healing properties.
Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.
although Pedey enjoyed every lazy minute of my recouperating.
I’m not sure I ever got that pair back from her.
I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.
The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days.
I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.
That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.
There’s the stuff I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.
While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.
My blog friend Barb writes about her life on a charming island in Maine, where she makes homemade sourdough bread and the most beautiful jewelry with handmade beads and where her husband is a lobster fisherman. Oh, how I wish they were my next-door neighbors. I love her jewelry creations, and I could eat lobster every day and not complain. Ditto for the homemade bread.
Barb recently wrote about a dumb day in which it was drizzly and grey and she wasn’t very productive in the studio. It must have been contagious, because her mother later remarked that it was a dumb day for her, too, and Barb’s hubby said the exact same thing when he returned from fishing. I liked the phrase, and have decided to borrow it.
I thought today was going to be a dumb day, for many reasons. First was waking up with a sore spot in my back. Must have slept in a weird position, because it sure didn’t hurt when I went to bed. I’m in a rotten mood because things still aren’t sitting right with me from Mother’s Day, and I can’t lift my black cloud until the matter is put right. My kids had a squabble right before it was time to leave for school carpool, and if there’s one thing that can ruin my morning real quick, it’s squabbling kids. My runnin’ buddy is playing tennis instead of joining me at the gym for cardio, and my other gym rat friend, Melissa, has to be at her kids’ school for a fun run, which frankly, doesn’t sound like one bit of fun to me. So that leaves me to face 45 minutes of cardio without my girls to talk to, which means the time will drag on and on. I’ll have to resort to relying on Nelly and Justin Timberlake for companionship. If only my ancient iPod had video capabilities, I could look at this to distract me.
After the gym, I have an appointment with Tammy, my beloved lymphedema specialist, to continue breaking up the scar tissue under my belly incision from The Big Dig. I have several spots that are about the size of a marble under my skin, and they must be obliterated. She uses a combination of massage, her Hivamat machine, and some firm pressure to make this happen. It alternates between being quite pleasant (the massage) and weird (Hivamat) and just plain awful (firm pressure). Luckily, I adore her and we have lots of good chats while she’s doing her thing. She moonlights as a therapist, at least for me, and she knows a lot of my innermost thoughts & feelings. Getting those out and leaving them in her little studio always feels good.
Add in a trip to the grocery store, one of my most dreaded chores, and having to spend some time today going through medical bills and fighting BS regulations, and it seemed destined to be a dumb day for me. Some days are like that. But lo and behold, hope arrived in the form of an email from my friend David. Y’all will remember him as the creative genius behind the illustrated story of the Drs S.
Well, he’s rescued me from my dumb day by announcing that he’s created an official logo for this little blog. It’s cute and creative and fun and full of meaning. I will unveil it in a separate post, both to keep you dear readers on the edge of your seat and also because it would be wrong, just plain wrong to put this little gem on the same page (screen?) as a long, boring, and pitiful description of my dumb day. Or what seemed destined to be a dumb day but has been rescued. Thank you, David.
An article on the front page of the Houston Chronicle today says that big changes are in store for the breast surgery required for cancer treatment. A new study from our own local attraction, M.D. Anderson, found that women with early stage breast cancer don’t need to have their lymph nodes removed, even if the nodes are cancerous.
This is big news. Breast surgeons are calling it “practice-changing” and proof of the old adage that “less is more.” Dr Kelly Hunt, surgery professor at Anderson, says, “The study shows that we don’t have to take out huge swaths of tissue, that we can avoid aggressive surgery without any effect on outcome.” Personally, I’m a fan of anything that avoids removing huge swaths of tissue. Ick. Ugh. Yuck. Been there, done that. More than once.
This new study pokes holes in the century-old belief that a surgeon’s job was to cut out every bit of the cancer, and found that removing the lymph nodes didn’t give women any benefit over radiation and drug therapy alone. The prevailing science has been that removing lymph nodes helps prevent the cancer from spreading and/or recurring.
Removing the lymph nodes from the armpit area is a hot mess waiting to happen. You’ve got the cosmetic issue of ending up with a concaved surface. You’ve got the potential for infection (ahem). You’ve got the risk of lymphedema, which is painful swelling in the arm that cannot be cured. Anyone who has ever seen a photo of a limb swollen to multiple times its normal size because of lymphedema knows to fear this condition. I’ve met several breast cancer survivors on the tennis court since I returned to the game post-mastectomy and post-infection, and more than one of them played with a compression sleeve (a form-fitting garment that goes from wrist to shoulder) to stave off lymphedema. Tammy, my dear lymphedema specialist, made me take one of those bloody things home to keep in my drawer, “just in case,” because the really stinky thing about lymphedema — aside from the fact that there’s no cure — is that it can come on at any time. Women have gotten it years after a mastectomy, with no prior symptoms.
If you want all the nitty-gritty details of the study, you can read the New York Times article, which goes into a little more detail than the Chronicle’s story. The Chronicle does get credit for providing more info about Anderson’s role in the study. We like to root for the local team. Seems 100 of the 891 patients in this study were from Anderson, and the researchers originally planned to expand the study to include 1,900 women, but shut down the study before that happened because the results were so overwhelmingly conclusive.
I like overwhelmingly conclusive results. You don’t find a lot of them in medicine. I’ve learned that the hard way in my “cancer journey.” I’m a black & white, just-the-facts-ma’am kind of girl, and I found myself smacking my head against a wall more than once in pursuit of a concrete, yes-or-no type answer. In medicine, precious few of those exist. I suspect that’s why it’s referred to as “practicing” medicine.
In fact, Dr Grimes, my infectious disease doctor, has spoken of practicing the art of medicine as much as the science of medicine. I really like the way that sounds, as if it’s so very civilized and full of aesthetic value. In reality, it’s a balancing act of drug therapy vs side effects; of benefit vs cost; of how far can we push the body yet still maintain the integral strength necessary to fight the disease.
In other words, there is no overwhelmingly conclusive answer. And sometimes the doctors don’t know themselves what the right answer is. That’s why it’s so nice when a study comes along that says, yes, for sure this is the right thing to do.
I’m super happy about this big news. I hope it lives up to its potential to make life easier for the 200,000 women a year diagnosed with this breast cancer. And I really hope that it’s just a teaser of what big breakthroughs in breast cancer research are yet to come.
Tammy, my lymphedema specialist who I love and adore and
look forward to visiting, asked me a simple question yesterday:
When’s your reconstruction? I told her that the two surgeons’
offices (Dr S and Dr Spiegel) are supposed to be coordinating their
schedules and issuing a surgery date this week. I told her this
Monday afternoon, which for all intents & purposes, is this
week. In fact, this conversation took place in the afternoon of
this week, therefore in the far reaches of said time period. I
thought it was perfectly reasonable to expect to hear back from
those docs with my surgery date. After all, they’ve had since
Thursday to work on it. That’s plenty of time. Giddyup. She laughed
at me for being impatient. Good thing I love
and adore her, or else that might have made me mad. She’s gotten to
know me well in the last several months, and we’ve become friends.
She has educated me on the human lymph system and has schooled me
on how to (hopefully) continue unleashing a wicked forehand
(repeatedly, with great force, and multiple times a week) without
ending up looking like the “after” picture in the lymphedema
textbook. She knows I’ve been to a second surgeon and have decided
to venture forth toward yet another surgery, and I thought she knew
that I’m a very impatient patient. I don’t even know why the word
patient, meaning a person who requires medical
care, has be a homophone to the word meaning “the bearing of pain
or difficulty with calmness.” And I might even quibble with that: I
can bear pain & difficulty with calm, I just want to get
through it fast. Anyone who’s been a patient knows it’s hard to be
patient. If you haven’t learned this first-hand, trust me. I know
of which I speak. Lots has been written about patience. Everyone
from Shakespeare to Guns ‘N Roses has addresses this fragile human
condition. My favorite allusion by the Bard to the patience
principle is in Othello: “How poor are they that have not patience!
What wound did ever heal but by degrees?” I feel like Shakespeare
has been peeping in my windows again. I could show him color photos
of a wound healing by degree (but won’t gross y’all out by posting
them here). I have a bar graph, too, showing the wound dimensions
and how they changed, by degree. I’m serious about the photos and
graph. Alexandre Dumas, perhaps the most famous French writer of
the 19th century, knew enough about patience to utter this: “All
human wisdom is summed up in two words — wait and hope.” I’m good
with the latter, not so much with the former. And if it takes
patience to gain wisdom, forget it; I’m out. Not that I’m
particularly impulsive, but once I make a decision and set my
course of action, I’m ready to get to it. Now, not later. Leo
Tolstoy wrote that “the two most powerful warriors are patience and
time.” Egads, I’m double-hosed. We’ve all heard time & time
again that patience is a virtue. I don’t quibble with this ancient
wisdom, I just don’t happen to possess that virtue. I’m sure Dr S
is still laughing at me begging him to let me go home from the
hospital the day after my mastectomy. I was ready to get outta
there and get on with my life. Not so fast, lady. Ben Franklin
wrote that “He that can have patience can have what he wants.” I
always though he was kind of a smart-ass. And why can’t I have what
I want without being patient? Where’s the Burger King motto in all
this? I want to have it my way, and my way is now. Right now. St.
Augustine was probably very patient. He too linked patience to
wisdom: “Patience is the companion of wisdom.” Whatever. I
understand all these ancient guys speaking about patience: the
world moved at a much slower pace back then. They’d probably flip
their wigs if they knew of the modern world and all its speediness.
Imagine those guys seeing a bullet train, or the Autobahn, or even
Loop 610 in Houston, and not even at rush hour. What about a
conveyor belt flanked by factory workers, producing goods from
digital watches to cars in a hurry? Or drive-through food or pizza
delivery? I don’t think any of the pizza chains offers “30 minutes
or it’s free” anymore, but still, when I order a pizza online, Papa
John has it ready in 2 shakes of a lamb’s tail. (such a cute little
expression, right?) The point is that these esteemed writers,
thinkers, and movers & shakers can blab all they want about
being patient, and I will listen (impatiently) and consider what
they say (as I rush off to do the next thing on my list). But I
still want it my way, which is now.
She’s younger than me and has 3 kids, ages 6, 2 and an infant. She’s tall, slender and blonde. And she’s a renowned surgeon. If I didn’t like her so much, I might hate her a little.
But she’s gonna build my new boobs, so I love her.
We had a fantastic consultation today. Every aspect of her office, from the atmosphere to the staff, is first-rate. Beautiful waiting area, pleasant receptionist, warm & friendly nurses, a big Mac (computer, not burger) in the exam rooms, a fantastic physician’s assistant, a comprehensive bound photo book of before & after pictures of her patients, and of course the lovely doctor herself.
According to her website, “Her goal is to provide not only the most advanced breast restoration procedures, but also a caring and supportive environment—allowing each woman to complete a successful rehabilitation from her breast cancer battle.”
I like that. I’m especially intrigued by the idea of rehab from my battle. Sounds good.
How about this: “Dr. Spiegel is committed to providing superior, patient-focused care and preparing the next generation of surgeons to meet the highest standards of excellence. This vision combines a dedication to advanced research, exceptional education, and the development of new, less invasive treatments and procedures.”
She trained in general surgery at Johns Hopkins Hospital and did her fellowship in reconstructive microsurgery and specialization in plastic surgery at Baylor College of Medicine where she was served as Assistant Professor of Plastic Surgery. Dr. Spiegel has trained with leading reconstructive surgeons around the world, developing and improving upon techniques to help minimize the aftereffects of breast cancer on a woman’s body.
This just keeps getting better and better!
Here’s where we get into the medical mumbo-jumbo: “Dr. Spiegel’s clinical expertise is in advanced breast reconstruction techniques and microsurgery, particularly in the area of surgical reconstruction with reinnervated autologous muscle-preserving perforator flaps, including the DIEP Flap, SIEA Flap, SGAP Flap, TUG Flap, and the TAP flap. Dr. Spiegel also specializes in Lymphedema Procedures, advanced Implant and Latissmus reconstruction, and has pioneered Sensory Innervation procedures which have the ability to reestablish sensation to the breast resulting in the most complete form of breast restoration. In addition, she is interested in all aspects of aesthetic surgery and is committed to women’s health issues in plastic surgery.”
Sweet. She is the total package.
They were made of paper. And small. Really small. I spent a few seconds staring at them before thinking, one size does not fit all.
Egads. Cue the humiliation. Again.
Luckily, I’ve been humiliated in a doctor’s office before, so I’m ready for it and ok with it. I slipped on my pretty blue paper panties and the matching blue paper gown and prepared to meet my new savior, Dr Spiegel. I’m so glad I’m past caring about meeting a beautiful and successful doctor while wearing the most unflattering paper garments ever.
She answered all my questions, most importantly the one about weight gain. I’m good, I’m fat enough and don’t need to gain any more.
Whew, that’s a relief. I was getting pretty tired of drinking beer & eating chips. Now that I’ve bulked up, I am free to return to my normal, healthy eating. She said she would prefer to have a bit more building material, but she can work with what I’ve got, so I don’t have to worry about applying for a new zip code for all the junk in my trunk.
Now that’s a relief.
She’s planning my reconstruction, and it’s going to be pretty great. I’m actually starting to envision an end to this long, bumpy road. As much as I detest the idea of another hospital stay and recovery, I’m looking forward to closing the book on this chapter of my life. It’s such a cliche, but it’s true. Reconstruction is a big, scary step. I totally understand why some women never do it. And if not for the infection and the mess it left behind, I wouldn’t be in any hurry to do it myself.
But the infection did leave a nasty mess, and it continues to wreak havoc, and the best way to end that madness is to excise the tissue (again), and replace it with new tissue and a new blood supply.
It means a long surgery, a night in the ICU, and several additional nights in a regular room. Ugh, yuck, and ick. But, it will all be worth it when it’s done and I can say I’m truly on the other side of this wretched business.
When you think of a breast cancer survivor, what comes to mind? A granny all decked out in pink? A joyful gal in a ball cap crossing the finish line at the Race for the Cure? How about a sad sack sitting in yet another hospital waiting for yet another test? You might think that surviving the diagnosis, the surgery, the treatment(s) and any subsequent complications means you’re done, right? Wrong. You’re wrong. It doesn’t end there, and there’s no prize for getting through it.
Welcome to the next phase of survivorship: the constant vigilance required to ensure the cancer isn’t making a repeat appearance. Although I’m just getting started, I’ll quit my bitching just long enough to say I am grateful that my doctors are vigilant, that I have good insurance, and that I can get the majority of my tests done 10 minutes from home. That said, it’s still a giant suck-fest.
Today’s test is a CT scan to check 2 little spots–1 on my liver & another on one of my lungs. These little gems were uncovered during a CT scan the last time I was hospitalized, in mid-August. No one seems too worried about them because they are so small, but once you’ve had cancer, you learn the hard way that there is no sure thing. There is no guarantee. A spot is a spot, no matter how small, and a spot is never a good thing once you’ve had The Big “C.”
Hence today’s CT scan. I’ve never had an abdominal scan before, so I didn’t know that in addition to the fasting and IV contrast (where they inject dye into my veins), I also get to drink the dye. So instead of my daily cup of coffee (which, by the way is the #1 reason I get out of bed each morning), I had to gulp down two big cups of Sprite mixed with contrast dye. No ice. No vodka. That’s just mean. I don’t like Sprite on a good day, and by good day I mean one in which the Sprite is mixed with vodka. Lots and lots of vodka. The only good thing about drinking these 2 vile cups is that I could have burped loud enough to seriously impress a room full of middle-school boys. Too bad the waiting room was full of old people, who either wouldn’t hear it or would think it was rude to launch into a Buddy-the-Elf style burp.
After the Sprite-fest was the IV contrast. Ugh. I really don’t like needles, but have had enough of them in the last 6 months, whether IVs or blood draws or shots or port flushes, to kinda get used to them, but I still don’t like them. My veins on the left side have been used so much that they rebel. They act nice at first, so right after the big stick, to pierce the skin and enter the vein, it seems as if it’s going to work, but just as the nurse is threading the needle higher into the vein, that vein says, nope, no farther. The nurse typically digs around a while before giving up and moving to the other arm.
Cue the complication: because my infection was on the right side, and because I’m working hard to avoid lymphedema (swelling from surgery or trauma that can be permanent and that is seriously contraindicated with tennis), I’m supposed to avoid getting my blood pressure taken or blood drawn from my right side. But that’s my good side! That vein hasn’t been used & abused so much that it pouts and throws a tantrum like a toddler who’s way past nap time.
Luckily, the nurse was very nice. She listened to my long, drawn-out story about my bad luck on the right side and bad veins on the left, and rolled up her sleeves to try and make it work. Work, it did, with just a little big of digging on her part. After the IV it was time to lay down on the CT machine. No big whoop. No trick there, just suck it up because it’s hard plastic instead of Tempurpedic. And then the fun part: injecting the contrast. If you’ve never experienced this, let me be the first to tell you that if you have to go through this, remember: as the dye enters your vein and travels throughout your body, you will feel a warm, wet sensation. Don’t panic and think you’ve wet your pants. Don’t worry too much about it because before you know it, the “did I wet my pants?” sensation is replaced by a crushing headache and the feeling of wanting to simultaneously vomit and pass out. It’s also ok to want to cry for yo mama. The good thing (!) about all this is, it doesn’t last very long. So before you know it, the “wet pants, gonna puke, but wait I might pass out” feeling is over, the scan is done, the nurse yanks the needle out from your vein, and you are free to go. Come back in three months, though, to do it all over again.
So the survivor vigilance is a lot of work. It’s hard enough to live with a monkey on one’s back, wondering if/when the cancer is going to recur. It’s hard enough to wonder, am I doing enough? Asking the right questions? Worrying about the right issues? Researching the right stuff? It’s hard enough to put complete trust, and thereby one’s life, in the doctors’ hands. They are human, ya know. As schooled and trained and rich in experience and purpose as they are, they’re still human. So as much as I do trust them, there’s always that little voice in the back of my head wondering, what if they’re wrong? What if they made a mistake?
Nobody said it would be easy, but I really didn’t think it would be this hard. That’s why I have this cute little pillow on my bed, to remind me that yes it’s hard, but dadgummit, I am indeed a survivor. Period.