The gift that keeps on giving

Posted: December 5, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 16 Comments

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.

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.

 

 

Being real

Posted: November 22, 2011 | Author: | Filed under: breast cancer, literature | Tags: , , , , , | 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.”

 

Square one

Posted: November 17, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 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.

 


Beer for dinner

Posted: November 11, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 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.

A day of deliveries

Posted: November 10, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 5 Comments

I thought about titling this Deliverance, as in the iconic 1972 movie. Like the movie, this week has been fraught with a “grueling psychological and physical journey” as I once again maneuver the rapids of this cancer “journey.” Ok, this week hasn’t been so fraught with the physical journey, as the most taxing part of it has entailed sitting in doctors’ waiting rooms for hours on ends. Not exactly a physical trial, but what it has lacked in the physical hardships, it’s made up for in the psychological difficulties.

If you haven’t seen the movie Deliverance, consider this a tip: it’s not pleasant to watch. Yes, it has Jon Voight and Burt Reynolds, but it’s also got some inbred locals and some nasty mountain men. The term “squeal like a pig” will never seem the same after one particular scene in Deliverance. The “Dueling Banjos” may well be forever lodged in your brain as well. Good luck getting that “song” unstuck from your head.

In the movie, the city slickers take a canoe trip down a river in a remote part of Georgia. They want to travel an uncharted section of the river before a dam project forever changes the river’s course. Initially, the trip is thrilling and chock-full of natural beauty, but things take a decidedly ugly turn as the foursome gets separated and the river becomes rougher. Eventually, the men are face-to-face with the reality of survival as they struggle to prevail over nature and win back the ability to exist in a civilized manner.

Going toe-to-toe with the worst that nature dishes out is an epic journey, much like the cancer “journey.” Cancer has dished out some nastiness, and my body has struggled mightily in an effort to right the listing ship and get back to “normal.” This week has been far off of normal as I’ve encountered some trouble in getting to the next surgery, the oophorectomy. The surgery has always been in the plan, it was just a matter of when to do it. The time is upon me, but the OB-GYN I met with Monday left me with more questions than answers in what should be a settled matter. In addition to being hell-bent on reiterating the risks and espousing the wide-ranging unpleasantries of surgical menopause on a “young” woman such as myself, she introduced a new fly in the ointment by decreeing that a laparoscopic oophrectomy was not an option for me because of the existing abdominal scar from The Big Dig.

Cue the confusion and emotional scrabbling that occurs when a doctor brings up an issue I’m neither prepared for nor expecting.  Just as I’m wrapping my head around the new idea of open surgery and all its risks and recovery issues, everything changes. Now I feel compelled to get another opinion on whether this surgery can indeed be done laparoscopically. And that’s what I’m going to do.

So as much as I hate the idea of getting yet another doctor involved, and as much as it pains me to realize that this “journey” is yet again complicated by things beyond my control, I pulled my battered self up by the proverbial bootstraps and made the appointment. And I will endure more hours waiting for another doc to weigh in on my disheartening situation. Getting on the phone and scheduling an appointment doesn’t seem like that big of a deal, but when you’re confused, emotionally drained, and frankly, pissed off at the world, it is a big deal. It also means rehashing–again–my long, complicated history with breast cancer and infection, which truly is something I’d like to just forget, put behind me, and move on down the road. Where is that damned magic wand, anyway??

All this bitchin’ and moanin’ leads me to the reason for this post: the day of deliveries. Just when I was at my wit’s end and was beyond ready to give up and declare myself the loser in this epic battle, I hear the rumbling of the FedEx truck coming down my street and stopping at my house. Imagine my utter delight when a box appears on my front doorstep. 

I get a monthly delivery from my oncologist’s to-your-door pharmacist, but this is way better. 

This delivery smells good, feels nice and weighty, and has a delicate crumb sneaking out of the wrapping.

It’s a homemade pie!

A homemade pie that’s magically appeared on my doorstep.

Just when I needed the boost that comes from a decadent treat, there it is.

I didn’t even think about waiting until after dinner to dig in.

I cut that pie and scarfed down a big ol’ piece without thinking twice.  I couldn’t care less about the calorie content or the ungodly amount of sugar contained in that piece. Instead, I enjoyed every minute of it. Derby pie, which is pecan pie on steroids, is something that would normally be a very occasional treat; in fact, it’s been more than a decade since I’ve had a piece. But the flaky, buttery crust and the nutty, caramely, filling with the sinful addition of chocolate chips and whiskey could not have come at a better time. How great is that to have a delicious pie that’s not only sweet and gooey and nutty and chocolatey but also boozy? Heaven on Earth. Finally, something worth smiling about! And what a wonderful coincidence that I’m eating delicious homemade pie mere days after I guest-blogged about … drumroll, please … homemade pie on my friend Marie’s blog. Marie is going through a terribly rough time right now, and her blog friends banded together to stand in the gap for her while she tends to the awfulness that is a dying parent (Huge kudos to Lauren for being the mastermind behind this lovely gesture). I was beyond honored to help, and thought pie a fitting subject to distract us from the gravity of her situation. I’m going to go out on a limb here and declare pie a temporary panacea to the emotional trials, large and small, that plague us.

As if my full belly and sugar-high weren’t enough, I soon heard the rumble of another delivery truck at my house and could hardly believe my fortune at getting another surprise delivery. Two in one day? Fantastic!

This one wasn’t food, but flowers!

Oh, how I love fresh flowers. There’s something so cheery about the pinks, yellows, and greens all working together to present a beautiful palette. I just adore the way the individual flowers nestle against one another to comprise a unit. They’re separate but when combined with others, they become cohesive. And the fact that their lifespan is fleeting makes me cherish them all the more — enjoy them while they’re here. Another decadent indulgence that makes me smile. Many thanks to my pie-shipping friend in Minnesota, and to my in-laws in Kentucky for turning around a rotten week. Three days in, I was ready to chuck this week and start over, but no more.

Finally! Something wonderful comes my way.

Jane, get me off this crazy thing!

Posted: November 8, 2011 | Author: | Filed under: breast cancer, cancer fatigue, menopause | Tags: , , , , , , , , , , | 9 Comments

Remember George Jetson? And his ill-fated stint on the treadmill? And him begging his too-cute-for-him wife to get him off the crazy thing? I know how George feels. I’ve never been a fan of the treadmill in general, much preferring to get my cardio fix outside or slog my miles on the elliptical, but this figurative treadmill I’m on now is the pits. Stop the ride, I want off.

I mentioned that I have a heavy issue on my mind and wasn’t sure what to do about it. Yesterday was intended for settling the issue and making the necessary plans to move forward. Instead, it was a craptastic example how nothing goes as planned or as expected on this damned cancer “journey.” Having just come off a week of antibiotic hell after my latest reconstruction revision, craptastic was the last thing I needed. And yet, in typical cancer “journey” fashion, it’s got to be as complicated as humanly possible.

Yesterday started with a trip to the dermatologist for ye annual mole check, and that visit ended with 2 shaved-off moles being sent off for biopsy and the unceremonial removal of 7 or 8 skin tags. Being a melanoma victim, I’m pretty serious about any weird-looking spots on my skin and don’t hesitate to point out ones that need to be lopped off. Like the Queen of Hearts from Alice in Wonderland, I say “Off with their heads.” I was a walking Band-Aid when she got done with me. Then I headed straight to my next appointment, stop #2 of 3 on the Monday doctors’ tour, which should have been a simple fact-finding trip but ended up being an exercise in frustration and confusion.

Here’s the deal: when I was first diagnosed, way back when in a time that now seems like another lifetime entirely, I knew that at some point I would need to have my ovaries removed. The oophrectomy, in addition to being an outstanding Scrabble word, was a foregone conclusion. Think about it: ovaries produce estrogen and progesterone, both of which provide the fuel for my kind of cancer. Cut off the fuel supply and starve the cancer and eliminate any hope it may have of coming back.

Simple, right?

Then the post-mastectomy infection reared its ugly, ugly head, and I wasn’t well enough to undergo another surgery for quite a long time. (Some certain people who read this blog don’t like to see mention of said infection, which I totally get, but it’s kinda vital in the chain of events, so let’s all just suck it up and read on; it was a fluke infection for which no one can be held accountable. File that one under “shit happens.”) Moving on….Then once I was well enough after the infection, I was sick to death of sickness and near-deathness, so the idea of another surgery was most unpalatable to me. I wanted and needed — and deserved, dammit — to get back to “normal” for a bit before going under the knife yet again, so the oophrectomy was postponed. But it remained a constant, a “when” not an “if.”

My stint back to “normal” was short-lived, however, because once I was recovered enough from the mess last summer, it became apparent that we needed to go ahead with reconstruction asap in order to give the now-healed chest wall a vascular system. That poor chest wall had sunk and had been sliced & diced & excised enough times that it needed fresh blood as much as Edward Cullen and his crew does. So the next step in the unscripted and not-nearly-as-exciting-but equally-dramatic-as-Eclipse saga that is my life, we commenced with The Big Dig and relocated blood vessels from my belly to my chest. After a long-ass surgery and a Hades-esque stay in ICU, the blood vessels bloomed in their new home and all was well. With my highly skilled and kick-ass surgeons, the Drs S, The Big Dig was a screaming success and I seemed to be on the right track.

Revision #1 in August and Revision #2 last week were successful as well, thanks to the original Dr S, who never ceases to amaze me with his surgical talent and artistry. That man is pure genius in the OR. Can’t recommend his work highly enough.

Having survived all these surgeries brings me to the here & now, which is the pursuit of the oophrectomy. Yesterday’s visit to the OB-GYN was a fact-finding mission for a surgery that I know in my heart of hearts I should have. Then the OB-GYN throws me a nasty curveball by questioning why I want to do this.

“Want” isn’t the word I would use for my feelings toward the oophrectomy, but I understand that it is elective compared to an appendectomy, say. But no, I don’t want to do it. I need to do it, and I’m being responsible by volunteering for it. But I certainly don’t want to do it.

Almost as much as I don’t want to have my carefully-thought-out plan upended. I listened carefully as the OB-GYN explained the permanence of removing one’s ovaries, the risks of the surgery, and the menopause it brings on. I’m there, I get it. I’m young for breast cancer and for removing my lady parts, but I’m way past childbearing and have been in menopause for the last 18 months, so I am well-versed in the hell that it is.

She spent a lot of time explaining that surgical menopause is abrupt and intense. Instead of the body gradually decreasing the amount of female hormones at its own pace, it’s like an on/off switch. One day you’re normal, the next day you’re in menopause. I’m still not sure what part of my 18 months of chemically-induced menopause she didn’t get, but suffice to say it was like banging one’s head against the proverbial wall. Bang! Bang! Bang!

Some days there’s not enough alcohol in the world to cope with these detours and speed bumps on the cancer “journey.”

(Ooooh, I think I feel a tshirt slogan coming on.)

The mess of the OB-GYN appointment continued when she was finally satisfied that she’d drilled the cons of the surgery into my head enough to examine me. She determined right away that doing the oophrectomy laproscopically (i.e., through my belly button instead of via an incision) won’t work because of the abdominal scar from The Big Dig. She thinks there’s too much scar tissue and the skin on my abdomen is too tight to allow her to maneuver laproscopically. This is one opinion, and a perfect example of why a pro-active patient solicits more than one. Nothing about my ab scar is unusual or unexpected, just makes a laparoscopic procedure trickier.

So the option to not doing the surgery laparoscopically is making another incision. She wants to make another incision, below the existing 17-inch racetrack. Another incision.  Now I’m thinking there aren’t enough cuss words to cope with these detours and speed bumps on the cancer “journey.”

(A companion t-shirt, me thinks.)

Ugh.

A most unsatisfying appointment.

There was just enough time for Amy and me to grab lunch before moving on to my next appointment. And yes, by lunch I mean drinks.

My next appointment entailed removing the two sets of stitches from Revision #2, which I expected, instead of removing them with tweezers or little scissors, there was a blade, which I did not expect. The downside to those super-tiny, uber-tidy mucho-skilled plastic surgeon stitches is that they’re a bit harder to remove than conventional, Frankenstein-style stitches. The blade was like an X-acto knife on steroids, and after the day I’d had, it scared me a little bit. But the good doctor held my hand, soothed my jangled nerves, and tut-tutted over me like the kindest of caregivers, and the stitches were no more. You can barely spot where they used to be because the incisions are so small, and the human pincushion lives to see another day.

But what about those ovaries? What to do about those?

The saga continues.

Only just a dream

Posted: November 7, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , | 10 Comments

I was all set to write about the Taylor Swift concert Saturday night, and the super-big, amazingly fun surprise of having Nelly — one of my all-time favorite people — make a surprise visit on stage. But then something happened that was wonderful and terrible, all at the same time and in equal measures, and the concert and Nelly were summarily usurped, no longer important. That something? I met my mom in a dream. It was wonderful because it was so real; it was terrible because it was only just a dream.

I’ve got a heavy issue on my mind, and I’m not sure what to do about it. I’ve done some research, but need to do some more. I’ve solicited advice and opinions, and I’ve tried to listen to my heart. I know what I need to do, but I don’t want to do it, and so I’m ignoring that little voice inside me that usually guides me — and with startlingly accurate results — because I want the answer to be something other than what it is.

Just before I went to sleep, the issue was in the forefront of my brain, and I was thinking how nice it would be to talk to my mom about this issue. How sweet it would be to lay my troubles before her, and let her do that things that great moms instinctively do when their kids aren’t sure which way to turn. She was really on my mind, and I guess that as I fell asleep, my brain took that next step and fixed up a little reunion between my sweet mama and me via a dream.

It seemed so real.

She looked like she used to pre-cancer. She sounded like her old self, not the weakened, wizened cancer voice she spoke with toward the end. She had her great big smile plastered on her face, and her infectious laugh rang out and rolled over me in the most perfect waves (those of you who knew her know that laugh, and I hope to high heaven you’re hearing it in your mind’s eye right this second). She called me NanAnn, which no one else ever called me, and it was the sweetest sound my ears have heard in a long while. She enveloped me in one of her “squeeze the stuffing outta ya” hugs, and I lapped it up like a kitten with a saucer of warm milk. Even the hug. Especially the hug.

She was back. My sweet mama was back. And it was like she’d never left.

The location of our reunion is fuzzy, but it’s not important. We didn’t have a lot of time together, which I suppose is quite symbolic when you think about it. No one else was around, but it was tremendously noisy. I have a hard time focusing when there’s a lot of noise, which of course my sweet mama knows. She told me that noise was the cumulation of all the swirling thoughts in my head, and that if I could set this big issue aside, the noise would quiet and the answer would come. I told her I didn’t want to do that; I want her to tell me what to do. She gave me that look, that familiar look, that communicated a ton without her ever having to say a word. I remember that look, and I knew then & there that she was not going to do the hard work for me. “Why can’t something for once be easy?” I moaned to her. “Do you want it to be easy, or do you want it to be right?” she replied.

How annoying.

I want both. Duh.

But it doesn’t work that way, and out of all the people with hard-luck stories out there, I for one should know this.

How ironic that when Nelly took the stage and surprised the audience toward the end of the concert, it was to sing a song called “Just a Dream.”

“I was thinking about her, thinking bout me

Thinkin bout us, what we gonna be?

Open my eyes, it was only just a dream…

So I travel back, down that road

Will she come back? No one knows.

I realize it was only just a dream.”

Digging deep

Posted: November 4, 2011 | Author: | Filed under: breast cancer, drugs | Tags: , , , , , , , , , , | 8 Comments

The last week has been rather trying.

Ok, it’s pretty much sucked out loud.

This time last week I was puking like a freshman pledge at a fraternity party, and the fun didn’t stop until I dosed myself with Phenergan and Zofran and conked out for the night. Little did I know that that was a harbinger of what was to come.

The preventative course of antibiotics has quite simply kicked my ass. I’ve never been one to run from a fight, until now. I’m done. I’m out. Let the countdown begin so someone can drag my sorry carcass out of the ring.

I’ve spent the vast majority of this week in my bed. The entire week. This is rather unusual for a busybody like me, but there was no way around it. My body said, enough. I got up for the necessities: sustenance, teeth-brushing, and potty breaks. Oh, and to drive carpool. Gotta go get the kiddies! Yesterday I picked up the kids in my pajamas — a first for me. I know some moms who do that on a regular basis, but I had never once done it, and today may well be a repeat performance. One of the teachers in the pick-up line, an adorable & energetic kindergarten teacher, stuck her head in my car to say hi and giggled at me in my jammies. She said,”Oooh, I want your life.” I looked her straight in the eye and said, “No, you don’t.”

Trust me on that.

Never have I been laid so low by the workings of modern medicine. Not when I had chicken pox in grade school and had to miss the school carnival (a belated thank you to Rick Dodd for bringing me cotton candy from the event). Not when I had mono in middle school and thought I was near death. Not when I got my tonsils out in high school and would have slipped quietly out of this world if someone had just pulled the sheet over my head.

I have never felt this sick.

I seriously considered calling my dear, delightful doctor yesterday to say that I highly suspect the antibiotics are poisoning me.

My whole body hurts. My bones ache. My lower back feels like it’s being pulled in all directions. My eye sockets feel too big. My tummy is in serious turmoil. The back of my mouth feels like something died in it. My tongue feels fuzzy. My brain is switched off yet my head is spinning, and the idea of making a simple decision is overwhelming. Nothing sounds good, nothing tastes good, yet I’m convinced that there’s something out there that will make this all better. Fresh-squeezed orange juice? No. A grilled cheese sandwich with spicy mustard? Sorry. An angel food smoothie with extra antioxidants? Good try, but no. Macaroni & cheese? Hah. Yogurt with lots of blueberries? Puh-leeze.

The only thing that’s gonna help me in this dire case is time. As the sage Boy George once said, “Time, oh give me time.”

Time to heal. Time for the drugs to run their course. Time to patch up my desiccated digestive system. Time to get past this latest round of shittiness.

(I really hope it happens fast, too, because my favorite girl & I have tickets to see Taylor Swift tomorrow.)

It’s time to dig deep, to look to wiser women than myself, and to seek comfort from whatever source in which it may reside. Today it’s Harriet Beecher Stowe who speaks to me, whose words assure me that I can get through this:

“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.”

I’m waiting.

Wisdom from the DL

Posted: October 24, 2011 | Author: | Filed under: breast cancer, Surgery, tennis | Tags: , , , , , , , , , , | 8 Comments

animalluv.com

I’ve been on the DL — disabled list — an awful lot since cancer came to town, and I don’t like it. I don’t like it, but I think I’ve gotten better at it. I’ll never be good at being a spectator in my own life, and I’ll never be one who enjoys the journey in my haste to get to the destination,but I have learned the value of time & place and that sometimes you have to be instead of do. I’ve learned to chant “It’s temporary” a thousand and one times to remind myself that while this is my life, it won’t always be like this.

Josh Beckett all wrapped up, redsox.com

Being on the DL has taught me a lot. Being forced to watch my tennis team while I waited for my body to heal enough to be able to play was one of the single best things I could have done for my game. If someone had suggested it to an able-bodied, healthy me, however, I would have laughed at the idea of sitting instead of playing. But watching helped me appreciate the game on a whole new level. I could focus on the strategies being employed, instead of being on high alert for the ball coming my way. I could study the nuances of each player’s serve, noticing how very different and personal a serve is. I noticed for the first time that everyone — even the best players on the court — makes bad shots. That was enlightening for an always-hard-on-herself player like me.

Andy Murray joins the DL. gototennis.com

With my next revision surgery scheduled for the day after tomorrow, I prepare to go on the DL yet again. I played my last match of the season last week, and we played our usual Sunday morning 4 sets yesterday. I enjoyed both immensely, knowing that I won’t get to play again for several weeks. But this time, instead of being bummed about having to sit out again, I realized something. Something important. Like my cancer “journey,” being on the DL is temporary, and instead of being anxious and impatient to get back, I find myself contemplative and introspective about my game. It’s not about playing as much as humanly possible, it’s about playing the very best tennis possible for me.

Kim Clijsters succumbs, livetennisguide.com

This time while I’m recovering, I’ll be thinking about getting back to basics: swinging through the ball; having the discipline to not hit a bad toss; moving in on a high ball; shifting to cover the middle. I won’t be thinking about whether everyone on my team is improving while I’m standing still. I won’t be thinking about all I’m missing. I’ll be thinking about all I have. I’ll channel Sheryl Crow, who may not play tennis but has the wisdom to remind us: “It’s not having what you want, it’s wanting what you’ve got.”

Kevin Everett beat the odds, buffalospree.com

I’ll never say that I want what I’ve got in terms of having been diagnosed with cancer at age 41, in the prime of my life AND my tennis game. But I can say that I’ll smoke ’em if I got ’em. I’ll make the best of my situation, regardless of how shitty it is and no matter how many times I go back on the DL. In addition to channeling Sheryl Crow, I’ll channel the wise & wonderful Dalai Lama and repeat a thousand and one times his mantra of “When we meet real tragedy in life, we can react in two ways–either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.”

I’ll be finding my inner strength.

Never, never, never

Posted: October 21, 2011 | Author: | Filed under: Uncategorized | Tags: , , , | 3 Comments

My sweet friend and lymphedema guru Tammy has a sign in her treatment room that I’ve looked at a million times and always find strength in it. Since I’ve been having a rough go lately, I thought I’d post it but then couldn’t find the photo I have of it. So I did a google search, thinking I’ll buy the sign as a little pick-me-up for myself, a “love gift” as my runnin’ buddy would say. Can’t find it. Anywhere. If I asked Tammy where she got it, she’d probably give it to me, so I’m not going to ask.

I did find a reasonable facsimile, and here it is. Meanwhile, the search will continue, and I will refuse to give up.

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