Come on, karma wheel!
Posted: December 8, 2011 Filed under: breast cancer | Tags: Austin American Statesman, breast cancer statistics, DCIS, invasive breast cancer 7 CommentsJust came across this story about a jackass in Austin who couldn’t be bothered to report to his probation officer as part of his plea-bargain for a burglary, so he claimed he has breast cancer and was undergoing treatment. He even provided a fake letter from an oncology office to that effect.
Seriously??
He accepted more than $1,500 from a benefit staged on his behalf.
Seriously??
This guy must have thought he was pretty special; while 1 in 8 women in the United States will be diagnosed with breast cancer, it’s more like 1 in 1,000 for men. This year alone, more than a quarter of a million women will be diagnosed with invasive breast cancer, and another 57,000 will get the news that they have DCIS breast cancer. For men, 2,140 new cases of invasive breast cancer are expected, according to breastcancer.org.
Yep, he’s special all right.
I sure hope the karma wheel catches up with him.
Inquiring minds
Posted: December 7, 2011 Filed under: breast cancer, cancer fatigue 9 CommentsSo yesterday I had my appointment with the gyn oncologist, and I haven’t taken the time to report back. Many thanks to you dedicated readers who’ve inquired about the appointment. Y’all are keeping me on my toes.
A little refresher: Dr B was recommended by Dr P, my new favorite OB-GYN, for my strange and complicated situation: to remove or not to remove my ovaries? That is the question. And then the follow-up question: how to remove them? After a recent week from hell with more conflicting opinions than skeletons in Herman Cain’s closet, the newest doctor in my supporting cast at long last added some clarity. Well, sort of.
Dr B says there certainly is reason to proceed with the surgery, based on my maternal family history. Although I tested negative for the BRAC gene, there’s enough cancer, of various sorts but mostly reproductive, to justify yanking my ovaries.
But, on the other hand, my recurrence score is quite low.
But, on the other hand, I do favor the scorched-earth policy of doing every- and anything I can to assure that this blasted cancer doesn’t have a chance to come back.
But, on the other hand, the oophrectomy would be surgery #9 for me since I was diagnosed 18 months ago. As much as I dig the morphine, I’m not exactly embracing another surgery.
But, on the other hand, perhaps it would be nice to breathe easy knowing I’ve formally cut ties between my body and the pesky hormones that caused cancer to so rudely interrupt my life.
At this point, you might be wondering just how many hands this new doctor has.
And you might now be quite enlightened as to the utter confusion of my current situation.
Dr B said that she’d like to give me an answer to my question, but there really isn’t a cut & dried, definitive answer.
I should have known.
Nothing, and I do mean nothing, has been easy or normal or gone according to plan thus far; why should this be any different?
Rather than flipping a coin, which at this point seems as reasonable as anything else, she proposed what sounds like a great idea: she will present my case and all its myriad complications, to a consortium of oncologists at their round-table discussion Thursday morning. The group of docs in this brain trust will pick apart my checkered past, render opinions, and hopefully provide an answer.
Who wants to put $20 on a hung jury?
As much as I would love to have Dr B call me at our appointed time on Friday to say, it’s unanimous (one way or the other, at this point I don’t really care as long as I don’t have to make the decision), I am completely prepared for her to say, we dunno.
And so I begin yet another round of the waiting game.
The good news is that Dr B said if I decide to proceed with the surgery, she can indeed do it laparoscopically. That makes for a much easier recovery, and at this point in my cancer “journey,” I sure would welcome something easy.
As much as I resisted getting yet another doc involved, and as much as I really didn’t want to have to trot out my medical history once again, I’m glad I was a big girl and made the decision to go the distance. I like Dr B a lot, and getting myself into the hallowed MD Anderson halls wasn’t nearly as complicated as I expected. Perhaps I’d had enough time to rest up after faxing the huge sheaf of medical records, pathology, and test results to her office. I was almost taken down by the “welcome packet” that arrived, in 2 separate envelopes, from Anderson. I managed to survive the process of filling out another sheaf of papers and documenting the gory details of my family and personal medical history, including a nosey question about how many sexual partners I’ve had. Geez, all I want is an opinion on an oophorectomy, not the Spanish Inquisition. 
The hilarity continued during the actual appointment, when the fellow who shadows Dr B was going over the sheaf of papers and her eyes bugged out when she got to the answer to the Spanish Inquisition.
Not really. That didn’t happen, but I imagined it happening. If my answer to that particular question was higher or lower than average, the fellow (whose name I cannot remember but who I wouldn’t identify anyway, because that might invade her privacy) didn’t let on. And I’m grateful for that. I’ve long since lost any shred of modesty or dignity in this cancer “journey,” but I do appreciate not having to get into that subject with her.
Along with the fellow who may or may not be judging me based on my answer to that one question, Dr B has a nurse practitioner and a visiting doctor from China. All four of them looked under the hood, so to speak, when we reached the exam part of the appointment. Nothing like bringing 4 new people into the inner recesses of the wild and wonderful world that is my body after breast cancer. I wanted to offer to let the receptionist and the janitor and the Fed Ex delivery guy come in, too, but I wasn’t sure if the group of 4 would get my humor, so I kept my big mouth shut. Maybe next time.
The gift that keeps on giving
Posted: December 5, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer battle, HOPE Lymphedema Treatment Center, K9 training, lymphedema, postaday2011, psychological effects of breast cancer 16 CommentsI’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.
Lymphedema.
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.
Not.
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.
A sliding scale
Posted: November 28, 2011 Filed under: breast cancer, cancer fatigue | Tags: Billy Joel, cancer battle, cancer diagnosis, MD Anderson, Only the Good Die Young, psychological effects of cancer 6 CommentsWords and images of battle are often ascribed to cancer. Some cancerchicks take issue with that but I’m not one of them. Having written this blog — mostly about cancer — for the last year, I’ve come to realize that it’s hard to talk about a cancer battle without well, calling it a battle. I’m not even sure what else one would call it. “While undergoing treatment for breast cancer” seems rather cumbersome; “While undergoing treatment for breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” doesn’t quite work, but “While battling breast cancer, I lost my mind, gained weight, and grappled with a whole new set of issues” is a bit more succinct. “During the time in which I was ridding my body of cancer” is pretty clumsy, but “During my fight against cancer” works quite well. I like efficiency, so the battle metaphor works for me.
One thing I don’t like about it, though, is the idea that those who “lost the battle” with cancer didn’t fight hard enough or were somehow at fault. Cancer is totally random, people. It strikes those who take excellent care of themselves as often as it strikes those who are not so careful with their health. Survival depends on a lot of things, and sadly, sheer force of will is pretty low on the list. If survival were tied to will, my sweet mama would be alive and probably ringing me up on the phone right now to ask me if I’ve mastered the art of pie crust yet and to suggest that I let her little darlins, aka my children, have enormous ice cream sundaes for breakfast. She fought like hell and did every single thing her team of doctors at MD Anderson told her to do, no matter how tired she was or how crappy she felt. She endured more awful stuff than I like to remember. She wanted to live to see her little darlins grow up (and to hassle me about not giving them enough treats/presents/leeway/benefit of the doubt). She fought like hell, and waged a mighty battle, and was a tireless, non-complaining warrior. And yet, she still “lost.”
Cancer, and the battle one’s life becomes when diagnosed, is on my mind today, as it often is, but today even more so than usual. Another friend has been diagnosed, and my heart is so heavy. My thoughts return to her often, and I’ve felt just plain sick ever since I heard the terrible news. Cancer comes after people indiscriminately, and it seems to me it gets the good ones just as often as the mean ones. My newly diagnosed friend is most definitely one of the good ones. She deserves so much better than pancreatic cancer. How someone with such a sweet and gentle nature and such a giving heart can fall victim to such a merciless fate is beyond me. And yet, she begins her epic battle today.
I’m not naive enough to wish for a world free of cancer. But I do wish there was a sliding scale. If you’re going to get it, in all its ominous forms, why can’t the scope of the disease be equal to how nice a person you are? Why is it that “only the good die young,” as Billy Joel sagely points out? It’s just not fair for cancer to wage war on someone who is patient and kind when someone who’s vain and shallow gets a free pass. Or for cancer to creep up on someone who’s worked all his life and is ready to finally enjoy retirement, while someone who’s dishonest and rude escapes unscathed. I just hate that cancer pounds on the door of someone who’s trying to do all the right things, yet skips completely the person whose main concern is keeping up with and besting her neighbors. Where’s the sense in cancer claiming a delightful human being who would give you the shirt off her back, yet ignoring the not-so-delightful human being who is petty and small?
I’d like this system a lot better if there were a sliding scale.
The Thanksgiving list
Posted: November 24, 2011 Filed under: breast cancer, food, kids, pets, tennis | Tags: baseball, champagne, dogs, family, Jacoby Ellsbury, post-mastectomy infection, postaday2011, Red Sox, Salisbury Beach, thankful 9 Comments
It’s Thanksgiving and I would be remiss if I didn’t remark upon the things for which I am thankful. This time last year I was fresh off the post-mastectomy infection train and trying to navigate life as a survivor. This year, the infection is finally in the rear-view mirror, and 8 surgeries later I’m on the road to reclaiming my normal life.
I’m contemplative on this day of everything good in my life. Not gonna think about the bad stuff today. Here’s a short list of the things I’m grateful on this day of Thanksgiving.
My family. And the beach. Two of my favorite things at the same time — good stuff!
Living in Texas, where it’s warm enough to swim on Thanksgiving. People joke about how Texas is a whole ‘nother country, and it’s true. Everything is bigger here, and better.
My kids. Every parent thinks their kids are amazing and wonderful and I am no different. 
As the grow I see more and more the people they are becoming, and that will always be a source of pride for me.
Youth sports. Being a part of a team, and experiencing the thrill of victory as well as the agony of defeat is a wonderful thing. 
Raising kids who love animals. Whether furry or slimy, cute or with a face only a mother could love, my kids adore animals and have learned compassion and sacrifice through caring for them. 
Good books. I love a good read. And I love that my kids are readers, too. My sweet mama the former English teacher would be so proud!
Natural beauty. Whether the rolling waves of Salisbury Beach, the mountains of Utah, or the public gardens in Boston, I’m grateful to have beautiful scenery to gaze at as I go about my days. 
Tennis. I’ve learned so much from the game, most notably humility, and continue to be challenged. People laugh when I say I started playing tennis because I like the clothes and had no idea how hard a game it is, but it’s true. 
Funny art and snarky humor. I hope I never outgrow my enjoyment of them. If I’m ever too old to laugh at something like what you see here, smother me with a pillow. 
Jacoby Ellsbury. Because he’s so fine. Oh, and baseball, too. I’m thankful for baseball. But mainly Jacoby. 
A legacy. The women in my family are strong and funny and kind-hearted. I hope to continue the traditions they’ve established. 
Mentors for my kids. I’m so grateful for the people in my kids’ lives who teach them, guide them, and love them.
Cocktails. Need I say more?
Great food. To soak up the alcohol.
Puppies! The more the merrier! Sometimes I think I like dogs more than people. Puppies especially.
Things that challenge me to get outside of my comfort zone. Like modeling in the Couture for the Cause a few weeks after my latest hospitalization last fall. Yikes. After wondering what in the sam hell made me agree to do it, I ended up having one of the single best experiences of my life. And plan to do it again in March. Get your tickets now, before it sells out!
Friends. Couldn’t have made it through the last 18 months without them. Whether buds from way back or newly connected, I’m imminently thankful for my friends. 
Cheers to Thanksgiving!
Being real
Posted: November 22, 2011 Filed under: breast cancer, literature | Tags: bilateral mastectomy, classic children's books, life after cancer, Margery Williams, psychological effects of breast cancer, The Velveteen Rabbit 4 Comments”It doesn’t happen all at once, you become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get all loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.” — Margery Williams, The Velveteen Rabbit
The Velveteen Rabbit is one of my all-time favorite books. I don’t recall reading it as a child, but I do love it as an adult. I was sorting through one of the never-ending piles of kid junk upstairs and found my copy of The Velveteen Rabbit. I sat down in the midst of my junk pile to re-read it. It had been too long; I certainly haven’t read it since breast cancer so rudely interrupted my otherwise-fabulous life.
The passage above jumped out at me, and stuck with me after I finished reading the story and got back to my junk pile. As I tossed worn-down erasers and fuzzless tennis balls into the trash and stacked some outgrown books for donation, I realized why that passage was stuck in my brain: it speaks to an issue near & dear to every cancer patient’s heart — the idea of being “done” and being able to get back to our “real” lives.
This is a recurring theme in the life of a cancer patient, whether stoic and methodical or impatient and impetuous. We want our real lives back. You know, the lives we lead before receiving the phone call from the doctor’s office that changed the course of our lives. In my case, it was a life of a million ordinary things — carpool, homework, packing lunches, making dinner, scrubbing infield dirt out of white baseball pants, playing tennis, and raising my kids. Those million ordinary things added up to make a full and contented life.
The life I lead now is quite different. So much so that I’m not even sure what my real life is anymore. I do know that in my pre-cancer life, anxiety didn’t plague me like it does now. I slept easily and soundly without visions of recurrence dancing through my head. I woke up each day ready to attack my to-do list and carve out a little time for me as well.
In my “real” life, my calendar wasn’t chock-full of doctor’s appointments, and now my life seems to revolve around them. Appointments for follow-ups after surgery, appointments to check blood work and feel for enlarged lymph nodes, appointments to monitor the prescription drugs that are a part of my everyday routine, appointments to stem the ever-present threat of lymphedema from the lymph nodes that were sacrificed during my mastectomy, appointments to plan the next surgery necessitated by a hungry cancer beast with far-reaching tentacles.
My “real” life wasn’t bifurcated into B.C. (before cancer) and A.C. (after cancer). Instead of marking time by the milestones of my kids’ lives, I now keep track based on which stage of the cancer “journey” I was in when said event occurred. To wit: Payton’s 11th birthday was 10 days before my bilateral mastectomy and the same day as my PET scan, to determine just how long this cancer beast’s tentacles were. The first Taylor Swift concert Macy & I attended was 2 weeks after the mastectomy. The post-mastectomy infection struck 5 days after my 41st birthday. Payton’s baseball team’s first trip to the State Championships coincided with the second hospitalization because of the infection. The weekend before Payton started middle school I was in the hospital again because of that damned infection. I had a bone scan the same day our new refrigerator was delivered. Payton’s first baseball game of the spring season was the night after my reconstruction surgery. School started 2 days before my first revision surgery. My second revision was 4 days before Halloween.
I’m trying to get back to my “real” life but am learning that some things will never be the same. Like The Velveteen Rabbit, becoming real again means my hair is different from the hormone-manipulation hell required for pre-menopausal cancerchicks. My eyes haven’t dropped out just yet, but my vision has changed (again from the hormones) enough that my Lasik surgery 7 years ago might as well never have happened. I’m for sure loose in the joints from the daily dose of Tamoxifen, and am getting used to the recurring bone pain as well. I am most definitely very shabby overall, with more grey hair and new wrinkles from the stress of life with cancer. Some days it’s hard to decide which has been battered more — my body or my soul.
And like The Velveteen Rabbit’s experience, it doesn’t happen all at once. It takes time. A long time. I’m not very patient, and much of this “journey” has been a true test of my limited stores of patience. They say it’s a virtue, but one that I don’t have. I’m still waiting to just become. Those 2 little words, “You become,” represent what I’m working toward in getting back to my “real” life. It definitely doesn’t happen to people who break easily. Cancer is a mean and vicious enemy. Many times on this “journey” I’ve heard myself saying out loud, How much more do I have to take? And the answer has always been, I don’t know how much, but more. Always more. If I were one who was easily broken, I’m not sure how this story would have played out. Most likely, I’d be in a 12-step program for Oxycontin addiction. Or I’d be a repeat visitor to the Betty Ford Clinic. What I do know is that there’s always more. And that it’s a daily battle to get back to “real.”
All knotted up
Posted: November 21, 2011 Filed under: breast cancer, kids | Tags: crocheting, glioblastoma, knitting circles, missing mom, postaday2011, Sugar Land Yarn Company, youtube crochet videos 7 CommentsMy favorite girl wants to crochet. She’s pretty crafty and likes doing stuff like that, which is great. Problem is, I’m not so good with the handicrafts. Sitting still and being precise aren’t my forte (hence the slapdash nature of this blog — I have a thought, I sit at my computer and bang it out; no laboring over every word or nuance. Plus, there’s something about the directions to crafty things that just don’t compute in my brain. Sure, I can read the directions but they make no sense to me.
But my girl wants to learn how to crochet, so I’m going to help her.
I did the rudimentary things necessary for learning a new hobby: bought a how-to book, invested in the basic supplies, and signed her up for a class–crochet 101 the Sunday after Thanksgiving. 
My girl is impatient like her mama, and doesn’t want to wait until next Sunday to learn how to crochet. She wanted to make a scarf and she wanted to make it right then & there. I can respect that.
But I can’t crochet.
Trevor found her a simple video on youtube that helped her get started. 
She was crocheting up a storm like she’d been doing it her whole life. I was quite amazed. Pretty soon, she had one long chain for her scarf. As my sweet mama used to say, she was cooking with gas. 
When it came time to create the second chain, to make the scarf wider, we were in trouble. The turning stitch is kinda tricky, and neither the book nor the youtube videos were making it click. We were stuck.
My favorite girl wasn’t ready to give up, but she was frustrated. She wanted to keep on crocheting, she just didn’t know how.
I was just sick, absolutely sick at the idea that neither my sweet mama nor my favorite aunt Sophia was still on this Earth to teach my favorite girl how to do a turning stitch. Both of them could crochet like a house on fire. Those ladies cranked out afghans like it was nobody’s business. That gene must skip a generation, though.
There was nothing I wanted more than to call my mom or Aunt Sophia and set up a crochet date for Macy. And if there were still here, I know there’s nothing they would have like more. Instead, my favorite girl and I piled into the car and drove straight to the Sugar Land Yarn Company, a sweet little store full of yarn, knitting needles, patterns, and best of all, crafty women. 
I explained our dilemma to the store owner, who said that she does not crochet. However, we were in luck because on Sundays, they have Afternoon Knitting, where women bring their projects and camp out in the store’s comfy chairs to knit and visit. If I were crafty and had a store that offered such a thing, I’d call it Stitch & Bitch, but these women clearly are much more civilized than I.
The store owner called out to the Afternoon Knitters and one of them, Miss Kathy, kindly volunteered to help my favorite girl with her turning stitch. Miss Kathy made it look easy. She demonstrated several times on two different crochet projects she is working on, and she spent a fair amount of time explaining it to Macy. I could tell by the look in M’s eyes that she wasn’t, getting it, though, and sadly, neither was I. Miss Kathy might have been speaking in tongues for all the sense it made to me.
I think Macy realized that there was a bit more to crocheting than just looping a single chain, and I guess by then she’d gotten enough of the new hobby out of her system and was content to wait until her class to learn the turning stitch. I was ready to head on out and leave the Afternoon Knitters to their projects and conversation, but my girl was lingering.
She watched each of the four knitters with her big, beautiful eyes, noticing the colors of their yarns and the patterns in their projects. She was quiet and still and respectful (good girl!). But there was something else, too — she was peaceful. I would expect most 9-year-old girls to be ready to blow that popsicle stand as soon as it became clear that we had received all the help we were gonna get. I would think most 9-year-old girls could think of a million things they’d rather do than hang out with four strangers who are at least 50 years her senior. The store was quiet and absent any music, TV, or video games, just the regular and rhythmic click of knitting needles. Yet my girl was peaceful in the company of the Afternoon Knitters. She would have stayed all afternoon if I hadn’t shooed her out of there, feeling like an interloper among the skeins of yarn. And she said that once she learns to crochet, she wants to come back and join the Afternoon Knitters.
It hit me then like a ton of bricks — my girl craves the company of a YaYa who died from uterine cancer before Macy could tie her shoes or write her name, and that of her favorite aunt who was swallowed up by glioblastoma in May. I guess neither Macy nor I realized until we barged in on the knitting circle how much she misses their company and their tutelage.
Another startling example of how much cancer steals from us.
I was nearly flattened by the unfairness of it all. It would have been very easy to fall into the abyss of grief, anger, and loss that comes when someone you love–and need–is stolen away by cancer. If not for cancer, my girl would be happily crocheting the day away with beloved family members. I have no doubt she could master the turning stitch under the watchful eye of my mom or aunt. Instead, I have to solicit help from strangers. Instead of enjoying the company and the bonds of one generation teaching the next, I’ll be sending my girl to a class in a hobby shop.
Cancer steals so much.
Square one
Posted: November 17, 2011 Filed under: breast cancer, cancer fatigue | Tags: cancer diagnosis, MD Anderson, missing mom, Nido Quebein, oophorectomy, postaday2011, psychological effects of breast cancer, square one, the Big Dig 7 Comments
“Your present circumstances don’t determine where you can go, they merely determine where you start.”
Thank you, Dr Nido Quebein, for telling me that. After the rough start I had last week, I was disheartened at the idea of starting over — from Square One — in finding a surgeon to do my oophorectomy. I needed a little attitude adjustment and Dr Q’s lovely quote provided just that.
Here’s the thing: my cancer “journey” has been long, complicated, circuitous, and seemingly endless. What is essentially a rather simple cancer that should have been easy to eliminate turned into a wild game of “how much can you take?” Just as I thought I was nearing the end of my “journey,” with what could be my last revision to reconstruction, the game became more intense and complicated and pretty much blew up in my face.
The next step of my “journey” should have been quite simple — have a routine procedure to remove my ovaries and eliminate the hormone production that fed my cancer. It’s outpatient surgery and rather easy compared to what I’ve endured thus far. But rather than being simple and working according to plan, it got hairy and I got overwhelmed. The idea of yet another doctor becoming involved filled me with dread, and it was like I was back at the beginning of this “journey,” newly diagnosed and jumping through hoops, frantically doing what’s needed to get to the next step.
Here’s where we are now: after standing on my head and reciting the alphabet backwards while juggling flaming batons, I was granted an audience with the lovely lady who schedules appointments for the next doctor in my ever-expanding roster. Oh happy day, after trying for 4 days to get through to this lovely lady, success was mine! I learned that this doctor only has office hours on Tuesdays and Thursdays because she’s in surgery every other day. Makes perfect sense, as she is a GYN oncology surgeon at the world’s #1 cancer hospital. What doesn’t make sense is why her staff doesn’t seem to be around on those other days. But apparently that’s not my concern and as long as I jump through the right hoops, maintain my headstand and keep those flaming batons twirling, I will eventually get what I need.
Hahahahahahahahaha.
Silly, silly girl.
You’d think I would have learned at some point on this wretched “journey” that even when one does all the right things, and completes all the required steps, one still does not get what one needs.
When a human voice finally appears on the other end of the line, I think I’m going to actually schedule an appointment. I’ve cleared my schedule to accommodate hers. I am ready and willing to appear in her office at MD Anderson whenever she can see me. It’s the absolute last thing I want to do, mind you — see another doctor about another surgery. To add insult to injury, factor in the psychological warfare involved in knowing that this next doc works in the same facility–and in the same department–where my mom sought treatment for her cancer, and her “journey” didn’t exactly have a happy ending. Not even close.
Nope, scheduling an appointment isn’t that easy. First, there’s the prerequisite litany of questions: name, address, phone numbers, email address, birthdate, insurance carrier, group number, ID number, policy holder’s DOB and SSN. Then comes the question of what’s your diagnosis? When I replied, breast cancer, the lovely lady not so lovingly informed me that this office doesn’t deal with breasts. Duh. I patiently replied that I understand that and know that this office deals with the more southern ladyparts, but because of my breast cancer, I need to consult with this doc on an oophorectomy. Seems clear, right? Then the lovely lady wants to know why I want to have my ovaries removed.
Why, indeed?
Because I’m bored. Because it’s been too long between surgeries for me. Because I miss the prick of the IV desperately searching for a vein in my tapped-out venous system. Because I’m lonely for the company of people in scrubs & white coats. Because I’m hankering for the smell of Betadine and the commotion of the OR. Because I long for the feel of the plastic mask on my face as I lie completely naked under a bright light in a room full of strangers. Because I’m hoping to lose a few lbs before the holiday glut and think the all-day vomiting that inevitably comes to me after anesthesia is a good diet plan. Because I haven’t spent enough time recuperating from surgery while the world around me marches ever onward.
If there’s a contest for most horribly worded question, this lovely lady would win it, hands down.
Once again, I’m called upon to gather my composure and marshal my manners to answer. I resisted the mighty temptation to give her a smart-ass answer and calmly replied, because my oncologist recommends eliminating the source of the cancer-causing hormones. I wonder if the lovely lady could tell I was answering her through tightly-gritted teeth and with fists clenched as I battled the urge to make her ears bleed from a long, colorful line of cuss words. I wonder if I should have told her that when you’re diagnosed with cancer at age 40, with elementary-school-aged kids at home, and when your own sweet mama died an anything-but-peaceful death from cancer at the still-young age of 67, you’ll take whatever steps are necessary to increase your odds against this savage killer.
Lovely lady went on to inform me that I would need to provide documentation of my breast cancer being ER+ and PR+ (estrogen and progesterone positive), along with a host of other documentation. I would need to provide pathology reports from my breast biopsy in April of last year, when the idea of becoming a cancer patient was the last thing on my mind. And go ahead and throw in the pathology reports from my bilateral mastectomy and the paperwork on my last Pap smear, too. Wait–don’t forget to have Dr P, the OB-GYN who referred me to the GYN oncology surgeon, send his notes as well. After that, and after verifying my insurance, the GYN oncology surgeon will review my case and see if there is sufficient evidence to proceed. Lovely lady promised to call me back and let me know where I stand.
For realz.
Ok, so more hoops to jump through, more due diligence on my part. Luckily I’m a rather fastidious cancer girl, and I have a very thick pink binder containing copies of everything the lovely lady requested except the Pap report and Dr P’s notes. Two phone calls and one online consent form later, that information is en route to LL.
Hurry up and wait.
After making the phone calls and gathering my records, I faxed 24 pages of the juiciest details of my breast cancer. All the nitty-gritty deets about tumor markers, mitotic index, prognostic markers, lymphovascular invasion scenario, anatomic pathology diagnosis, sentinel lymph node results, tumor size, and Elston-Ellis modified scores. It’s a fascinating read. And a wonderful trip down memory lane, just as I think I’m putting a little distance between myself and the cancer show.
I’ve done my part, now I wait.
Back to Square One.
Hold, please
Posted: November 15, 2011 Filed under: breast cancer, cancer fatigue 5 CommentsI’m not often at a loss for words, but I have been lately. November has been a rotten month for me so far, and I’m beyond ready for that to change. Just when I wonder if this “journey” get any harder or any more complicated, I smacked in the face with the answer: a resounding YES.
My oophorectomy saga continues. It’s a pretty simple surgery, really, especially compared to the other surgeries I’ve had of late. And there’s certainly no shortage of great doctors in my town. But finding one to do the oophorectomy robotically, as opposed to open or laparoscopically, has been tricky. The first referral I got was packing her bags for a 6-week overseas trip. The second one is phasing out his surgery practice, instead training other docs on how to do the procedure. The third one seemed promising, but alas her office has an aversion to answering the phone for patients who just want to make an appointment.
First her office was already closed for the day, at 4:00 on a Thursday. Then the office was closed all day Friday. Two strikes, in my opinion, but still alive. However, when the answering service is taking messages on Monday late morning, I wonder what’s up. By Monday afternoon, neither I nor my OB-GYN’s nurse could get someone, anyone, from that office to call us back to schedule an appointment. Multiple messages left, but not one was returned.
What’s happened to customer service? And is this really the first impression this doc wants to make with prospective patients? It certainly doesn’t give me much confidence in the way she runs her office. My patience with difficult doctors has worn quite thin. In fact, I would describe it as metal-on-metal, or bone-on-bone. It’s not just worn thin, it’s eroded. To borrow a line or two from spunky songbird Kelly Clarkson, “You ain’t got the right to tell me.”
“Well ya think you know it all
But ya don’t know a thing at all
Ain’t it something y’all
When somebody tells you something bout you
Think that they know you more than you do.Well ya like to bring me down don’t ya
But I ain’t laying down, baby
I ain’t going down
Can’t nobody tell me how it’s gonna be
Nobody gonna make a fool out of me
Baby you should know that I lead not follow.You ain’t got the right to tell me
When and where to go, no right to tell me
Acting like you own me lately
Yeah baby you don’t know a thing about me
You don’t know a thing about me.”
But I digress.
Luckily, I have an inside source. A wonderful friend who knows people in the know at the massive organization I’m trying to gain entry into. She’s kindly going to make a couple of phone calls to her well-placed friends at MD Anderson and ask what in the sam hell does it take to get an appointment with this doctor? Lucky for me, because I am this close to saying forget it. To keeping my damned ovaries and their deadly hormone production. Surely the gamble of keeping them is easier than navigating yet another health care system and all that entails. Frankly, the idea of starting over with another doctor, after having seen 5 docs last week, makes me want to cry — and y’all know I’m not a crier. The idea of providing the details of my insurance card and reciting all my personal info is overwhelming. And don’t even get me started on how I feel about trotting out my long, complicated cancer “journey” for a new doc. Ugh.
Beer for dinner
Posted: November 11, 2011 Filed under: breast cancer, cancer fatigue | Tags: beer for dinner, gyn oncology, Johnson Space Center, laparoscopic surgery, oophorectomy, postaday2011, psychological effects of breast cancer, Texas Medical Center, the Big Dig 14 Comments
shortsbrewing.com
Nobody said it would be easy…but I certainly didn’t expect it to be this hard. “It” is my least-favorite part of the cancer “journey,” which is the uncertainty and the waiting. The uncertainty and the waiting are far-reaching and apply to many aspects of the cancer “journey,” whether in awaiting pathology results, trying to schedule an appointment with the litany of doctors involved in one’s care, or marking time on the calendar between the latest procedure and getting back to “normal.”
The uncertainty and waiting applied this week to my attempts to move forward on the long-ago planned but not yet executed oophorectomy. When this whole mess began, and by mess I mean breast cancer so rudely interrupting my otherwise happy, healthy life, I knew that I would at some point need to have my ovaries removed. Those two oval-shaped organs have got to go because of the estrogen and progesterone they produce.
Monday I saw an OB-GYN, let’s call her Dr P, who is part of my OB-GYN practice but not my doctor. She delivered Macy because she was on call when my little girl made her appearance into the world. I chose to see her this week because her reputation as a surgeon is stellar and she is known for her patients not having complications, something that appealed mightily to me, the reigning Queen of Complications. I’m more than ready to take off that crown and pass it on to my successor.
Anyhoo, Monday’s visit with Dr P wasn’t terrible but it introduced a fly into the ointment when she enlightened me to the fact that a laparoscopic oophorectomy wasn’t an option for me because of the abdominal incision on my belly from The Big Dig. This was something I hadn’t even considered and is another example of how much of what one needs to know along this cancer “journey” must be learned the hard way. Hate that.
So I left Dr P’s office on Monday trying to wrap my head around scenario #1: the idea of open surgery, which is most unpleasant to me, and that she won’t be able to use the existing incision but will require another incision, below the 17-incher I’m already sporting. That incision is healing so nicely, and is so razor-thin and in the process of disappearing altogether. The idea of messing with it and disrupting its lovely healing is not my favorite.
In discussing the shifting scenario on Tuesday with the cabal of Amys, my two dear friends whose previous medical professions have made them trusted members of my decision-making team, it becomes clear that while Dr P is a great surgeon, she may not be the right one for me. I’m not ready to give up on the idea of doing this next surgery laparoscopically, which means I need to get a second opinion. As much as my petulant self did not want to set foot in one more doctor’s office, and as much as my weary self hated the idea of making yet another appointment, paying yet another hefty co-pay, and trotting out my sordid cancer history one more time, I knew it needed to be done. I got lucky and there was an opening to see the second Dr P on Thursday. Perfect.
I already had a doctor’s appointment for Thursday, with Dr N to investigate the idea of getting a little nip/tuck for my bladder. If we’re going with scenario #1 and doing open surgery for the oophorectomy, might as well take care of the bladder, which is showing signs of wear & tear that will only get worse with time and my balls-out style on the tennis court. I really like Dr N and went from dreading the idea of the nip/tuck to seeing how it can seriously improve one’s daily life. And I love that Dr N called me the “perfect candidate” for this simple procedure. Hooray! “Perfect” and “simple” are two terms that have not applied to any of my cancer “journey” thus far. After all this time and a case that’s been anything but textbook, I’m the perfect candidate. That was satisfying on many levels. Dr N works with both Dr P and the second Dr P, so it appeared to be a simple case of choose which OB-GYN to do the oophorectomy, and Dr N would coordinate. I’m lucky that Dr N works with both of the OB-GYNs I’m considering, because he doesn’t work with docs in the med center, so lucky me: I have my choice of OB-GYNS and the fantastic Dr N right in my backyard. I left Dr N’s office with something that’s been painfully absent in my cancer “journey” of late: hope. I was hopeful that this next round of surgery was going to come together, despite the shifting scenarios.
Stupid girl.
That hope was summarily dashed when the second Dr P has yet another differing opinion on how to do this surgery. What was I thinking, having hope and feeling good about the direction I was headed? What an utter fool I was for believing, however briefly, that the tide was turning and for once things were going to work according to plan. Granted, the plan has changed several times in the short span of a few days, and with each new doctor there comes a new scenario for which I have to wrap my head around, but I actually felt good after the visit to Dr N and went into the visit with the second Dr P thinking this would all come together.
I absolutely love, love, love the second Dr P. I loved him before officially meeting him when I overheard his phone conversation with a patient as I was escorted into an exam room. I have no idea what the reason was for the phone call, but he exuded care and concern with that patient via phone, and although I don’t know any details it was clear he was finding a solution. He is everything the first Dr P is not: warm, energetic, full of personality, an outside-of-the-box thinker who was genuinely interested in finding the best solution for me. He agreed with the first Dr P about my belly not having enough wiggle room to allow for laparoscopic surgery, and he introduced yet another troubling facet to this already-troublesome situation: if we do open surgery, whether using the existing incision or making another one, there’s precious little room to close that incision. The skin is just too tight–too tight to allow the area to be inflated for surgery, and too tight to close after surgery. He was also adamantly against open surgery because of the infection risk.
But the second Dr P isn’t giving up, and he hatches a new plan. Scenario #3: consult Dr K, a GYN oncology surgeon who does robotic oophorectomies.
I didn’t know such an option existed. Again, learning the hard way. And by the hard way, I mean the most exhausting and mentally taxing way. I told the second Dr P that as much as I appreciate his obvious care for the best possible outcome for me, I’m a bit on the Type A side. I’m a planner, I like things to go according to plan, I dislike change, and I do not shift gears well. In the span of 3 days, I’ve gone from laparoscopic; to a whole new incision; to using the same incision; to not favoring open surgery; to re-exploring laparoscopic; to nope, it won’t work logistically; to robotic surgery.
That wears me out.
I worked hard to wrap my head around the second Dr P’s plan. I really tried to embrace scenario #3, even though it meant adding another doctor to my roster. The second Dr P was sympathetic. He understands that I don’t want to get another doctor involved, and that I thought I had a plan and now everything is topsy-turvy. He reminded me that it’s worth it to see yet another doctor because he truly believes the robotic surgery will give me the best possible outcome, and with a shorter recovery time to boot. Sounds win-win, right?
Except that, just as I’m shifting gears clunkily and going along with this plan, another *&@%^ complication arises: Dr K, the doctor who would do this robotic surgery, is leaving the country — tomorrow — for 6 weeks.
Really?
Really???
Shoot me now.
That was it. I’d had it. I marshalled every ounce of self-control I had in order to avoid bursting into tears right there. And I am not a crier. Especially not in front of other people.
The second Dr P’s nurse, Maria, saw my distress and said, let me catch Dr P when he comes out of the exam room to see what else we can do. Thank you, Maria.
So she caught the second Dr P and told him that Dr K was unavailable for 6 weeks and that if this already-mentally-unstable patient has to wait that long to even see if scenario #3 will pan out, she may go bat-shit crazy and take us all out in a to-the-brink umbrage from which there will be no survivors.
The second Dr P called Amy and me over to the nurse’s station and hatched an alternate plan: use another GYN oncology surgeon who does robotic procedures. Thank goodness I live in a city that is ripe with specialty surgeons. But alas, both Dr K and Dr B, the second GYN oncology surgeon, work in the med center, which screws up my plan to incorporate Dr N into the surgery. Great googlie-mooglie, the idea of finding another urologist to do the bladder surgery –when I felt so good about Dr N doing it–was altogether too much to think about. I’m really on the brink now.
Sweet Maria offers to call the second GYN oncology surgeon’s office and make the appointment for me. At this point, she could have strapped me into a lunar module and sent me on a one-way trip to Mars. My brain was beyond fried so I blithely nodded my assent.
image courtesy of Johnson Space Center
retrosigns&more.net
Would you believe that surgeon’s office was already closed for the day? And is closed on Fridays, so I have to wait until Monday to even see whether I can get an appointment. Cue the to-the-brink umbrage. And the beer for dinner. Five doctors in this week–and more to come–and I’m no closer to having an answer.
This brings us back full circle, to my least-favorite part of the cancer “journey,” which is the uncertainty and the waiting. I’m uncertain about which scenario will play out, and I’m waiting to get an appointment with yet another doctor, who I fully expect will come up with yet another scenario. Here’s one thing I am certain of, and there will be no waiting on this fact: I’ll be having beer for dinner again tonight.
The Pink Underbelly 