Saturday, December 31, 2011

CATHARSIS

I started this blog back in April as a cathartic way for me to deal with The Big C. I wasn't writing for anyone in particular; I wasn't writing to keep friends or family updated. (Few people even knew I had started a blog.) My goal all along was to simply tell my tale in all it's gory glory, and eventually sync up my story to my life in "real time" by year's end.

Well, that hasn't happened. In part because I am distracted; in part because I am tired. But mostly because I am a very slow writer.


Me on my favorite hiking trail. (Copyright © 2011 The Big C and Me)
I debated whether to fast-forward to what is happening right now. Or write the Reader's Digest version of "The Big C and Me." But that would involve skimming over certain road blocks and challenges, which wouldn't be fair (or truthful) to you — or to me.

So my goal for 2012 is to continue to unravel the details of my cancer experience as it happened (vs. as it is happening). And on that you have my word. Albeit a very slow one.

Happy New Year!

Thursday, December 8, 2011

HAPPY CANCERVERSARY!

I have really been dreading this day. 

All last week (the past few weeks, really), I have been marking each day by saying to myself, At this time LAST year, you still were naive to what was about to change your life. On this date a year ago, you had a mammogram but you weren't worried. On this day, you had a biopsy but you were still in the fog of denial.

Then yesterday landed. The 70th anniversary of the bombing of Pearl Harbor. Historic for two reasons: It also happens to be the anniversary of my father's death....

Wednesday, November 30, 2011

LAND OF CONFUSION

Anyone who has ever traveled down cancer's long and crappy road has spent time in the Land of Confusion. Lots and lots of time.

I stumbled upon a perfect visual depiction of this crazy cancer land, and thought I'd share it.

There is a sweet website called theydrawandtravel.com, where artists the world over submit map illustrations of their travels; that's how I discovered this simply awesome drawing, simply entitled "State of Confusion" by artist Deer Prudence from Berlin, Germany.

It is the ideal metaphor for cancer.

After all, who among us hasn't stepped off The Beaten Path, fallen Out of Range, not seen The Woods for the Trees, gotten lost in the Sands of Time, wadded in Fake Lake, crossed the Plain Impossible, visited Villain Village, landed Somewhere Else, swam for our lives in Sea Me, tried in vain to Sea You, felt like an Ugly Fish, nearly drown on Cape Rain, fallen down Cave In, made (or been the butt of) Shallow Jokes or pitched a tent in Underwater City?

We all have. Cancer or no cancer, we can all relate.

Deer Prudence (and They Draw and Travel), you hit a home run with this one! Though you may have intended it to be a guide on how to get lost, you have in fact put into images what so many of us that deal with cancer feel. You are a Source of Inspiration, for sure. Your illustration is plain, pure, unbridled perfection!

TheBigCandMe.blogspot.com
(Copyright ©2011 TheyDrawAndTravel.com)


Friday, November 18, 2011

HOUSTON, WE HAVE A PROBLEM

I'm at a follow-up with my plastic surgeon, Dr. C. Unfortunately, he's not 100 percent happy (his words) with the way my right incision is healing. He used the term "delayed healing." It's worse on the right (cancer side) than the left. My skin is red on that side and looks bruised. I have surgical tape on both incisions, but beneath the tape a dark area is visible. Dr. C. cautions me to pay close attention to this area, because if it gets any darker, that means my skin is dying.

Necrosis? Oh, joy.

I'm to use Xeroform as a wound dressing. But first I apply Bactroban (an Rx antibiotic ointment), which I then top with a strip of Xeroform, which I then top with gauze which I then tape to my skin. I’m to continue to wear my compression vest 24/7. (Confession: It’s become a rather comforting contraption.) And if my incision doesn't decide to heal, Dr. C. will decide whether to surgically reduce the pressure in the tissue expander by removing some saline. Super duper!

And as if all that weren’t enough, Dr. C. is leaving the country in four days — for three weeks. Yikes.

I get home from the doctor, pull out my digital camera and start shooting close-up images of my incisions. I do this each morning. Husband finds it odd. I tell him it’s the only way we can be objective; from day to day things look fine, but if you compare Day 1 to Day 3, well, you can see a difference. (Note to all surgery patients: Photograph your healing journey.)

A few days go by. After my shower one morning, I inspect the wound. I don’t like the look of it. More redness, more darkness at the incision line (under the surgical tape). I take more pictures.

My dear friend M. comes over for lunch. But I'm in a bad mood — definitely not like me when I am spending time with friends — and I can’t seem to shake it. M. asks why I’m feeling unsettled, then encourages me to call my doctor. It’s 1 PM on a Friday afternoon. What are the chances I’m going to reach anyone? But lo and behold, Dr. C.’s nurse answers the phone, and I lay my worry out there like a blanket on a fire. But she is not alarmed. The redness I'm experiencing sounds normal, she says. She’ll mention to Dr. C. — who happens to still be in the office. Psyche.

I hang up and feel good that I’ve taken action. Yet something is still nagging at me. Finally, a light bulb goes off: Email Dr. C. a few photos so he can see exactly what I’m talking about! (This also saves me a trip to his office, not that I could get in on a Friday. Just sayin'.) I call the nurse back and tell her to check the JPegs I just emailed. If I don’t hear back from her today, she says, that means Dr. C. thinks things look fine and I should keep up with the Xeroform program until he returns from overseas.

OK! Now I can finally relax. I enjoy the rest of my lunch with M. and she leaves in the late afternoon.  No call from Dr. C.  I take a nice, long nap, then rummage through the refrigerator for something to eat.

While I am downstairs, my cell phone rings upstairs. I don't hear it. By the time I realize I have a message, it's 7:30 PM.

Guess who. Yup.

Dr. C. apologizes for messing up my weekend, but he wants me to meet him at the hospital tomorrow morning — yes, Saturday morning — at 5 AM. He has secured a surgical room for what he is calling a “minor intervention surgery.”

I don’t have time to think, to worry, to even wrap my head around the fact that I am about to have another surgery just 16 days after my bilateral mastectomy. (Cancer: The gift that keeps on giving.)

Husband and I go to bed early, get up at 3:45 AM and drive to the hospital in the dark. I’m prepped and wheeled into surgery by 7:30 AM. Luckily my anesthesiologist hand-tailors an Rx cocktail (along with a patch behind my ear) so that when I came to, I am alert and not dizzy or nauseous, and am able to go home 90 minutes later. (So not like last time.) I am also not in any pain.

Turns out too much pressure on my tissue expander was causing my skin not to heal. I have necrosis on the top of my incision, but there is also a spot that is necrotic under the skin as well — and that is the dangerous part. If we don't fix it now, I run the risk of losing the expander and starting over again. So Dr. C. removes 50 cc's from my right expander (originally filled to 400 cc's), debrides my wound and re-sutures my skin.

I feel like I dodged a big, necrotic bullet, and am proud of myself for staying on top of this, for diligently taking photos of myself, for coming up with the idea to email them to the nurse, and for trusting my gut throughout. This surgery wouldn’t have happened otherwise. (Listen to your instincts, my friends, even if it means calling your physician on a Friday afternoon and having surgery on a Saturday.)

The following day, just 30 hours post-surgery, I show up at a party to meet our neighbor’s first grandson. People are surprised, even shocked, to see me; they tell me how great I look, that they can't believe I just had another surgery. Me either. Even though I am light-headed and have very low energy, it still feels good to get out among the living. I even forget about my pressurized chest for a couple of hours.

The next few days are hazy. I feel woozy, but we manage to take in a matinee. (Again, a sense of normalcy I desperately need.) And yes I'm still watching these incisions like a hawk. Snapping pictures every day, oh yeah. And applying my ever-trusty Bactroban and Xeroform.

But my smile belies how I'm really feeling: blah, depressed, unfocused. What does going through all this cancer %$#@ and subsequent complications mean? What's the point? I feel like there is something I am yet to do, something bigger, but I don’t know what it is.

Three weeks post mastectomy, one week post second surgery, and I wish I could say I have some energy back, but nowhere close. I have discomfort and pressure on my chest 24/7, feel like there's fog in my head, have a headache that comes and goes. Internally, I think I'm still 30 years old, so am expecting my body to bounce right back. Then I remember I'm really 52. So I need to cut myself some slack. I need to become more patient — a virtue with which I will become very well acquainted in the coming months.

Monday, October 24, 2011

PATH TO THE REPORT

Let's talk food and conversation post-surgery — specifically, food delivery by friends and family while a patient (that would be me) is recovering. 

The people, they come with the meals. As in, they bring over the food, they sit down and they eat it with us. 

Perhaps this is peculiar to my circle of loved ones; my family lives thousands of miles away, and two out of my three siblings (plus my sister-in-law) have traveled to see me post-surgery. My husband has taken off work to take care of me, so I don't really need (or want) anyone staying at my house. Lucky for me, they all stay with my Mom.

But let's get back to mealtime...

Thursday, October 13, 2011

NORTHERN EXPOSURE

I haven't looked at myself yet. Haven't been able to take a shower so it hasn't been an issue.

But then Dr. C. unwraps my mummy-esque torso. I stare straight ahead. As my compression vest and bandages fall away, I feel — what's the word? — Oh yeah. Free! My skin hasn't felt air like this in many days. But the pleasant sensation of having nothing constricting me is fleeting; it's replaced by a strange, awkward feeling. If I didn't know better, I'd think I had two water balloons tacked to my chest. Oh wait. I do. They're called Tissue Expanders (TEs). They're filled with 400ccs of saline a piece (and held in place by my recently moved chest muscle); the TEs job is to hold the space where I used to have breast tissue. They also stretch my skin. Eventually they will be replaced with implants. I refuse to look.

Husband hands Dr. C. a slip of paper with the cc's my drains have been outputting since surgery. Good news: The drains can come out. (Yippee! One step closer to stepping in hot water.) Husband distracts himself by looking out the window as Dr. C. quickly pulls each foot-long piece of tubing from my body. To be honest, I can't look at that either. (They really should get some paintings on these walls...)

Finally, all four drains are gone. Next he pulls out the teeny, tiny threads that connect my pain pouch to the center of my chest. I don't feel it. Probably because my chest is still numb.Then he applies antibiotic ointment to both incisions. My left one is 3 inches long and runs across the center of my "foob" at an angle. My right incision, on the cancer side, is twice as long; the scar snakes up under my arm. (That's where they took out the lymph nodes.) Then he paper-tapes gauze over both incisions and slips me back into my surgical vest.

I fumble with the fasteners; my hands are shaking. Avoiding looking at yourself creates a lot of tension, apparently. Husband comes to my aide, carefully zipping my vest closed. Husband noticing that I can't hook the eye on my vest? Definitely a moment.

So I am in heaven without those stinkin' swingin' drains. I feel like celebrating. (Can I have a drink yet?) Dr. C. says I can take a shower. Whew who! Back home, I grab my spa robe and head for the bathroom, then realize I can't take a shower without assistance. Duh. Can't lift my arms. Can't shut the shower door. And yeah, you know what is about to happen next: Northern Exposure.

Because now I'm in a predicament. I haven't yet seen myself naked, and I have to get naked in order to shower. And that means I have to be naked in front of Husband. For the first time. Without. My. Breasts.

I have to get past this hurdle.

Husband sets a plastic bench inside our walk-in shower; my soaps and shampoos are within reach on the floor. A hand-held showerhead is hanging above me. He turns the water on so it can start to get warm, then leaves me alone to collect myself. If only it were that easy.

I can't get my dressings wet but I can shower; I can't remove my bandages, but I can remove my vest. As the sound of the water beats down on the bench and the room begins to slowly fill with steam, I carefully unhook my security blanket, and the constricting pressure I constantly feel evaporates. I take a deep breath and look past the hazy mirror at my little "mounds." Well. Not so bad! I don't look as odd as I imagined. I'm not flat chested. There is something there — it's just covered in bandages. Appearance-wise, I can deal.

The weirdest part is how I feel. Wearing my surgical bra masks the artificial feeling of these dead weights that are temporarily a part of me. They are awkward and foreign. Despite my numbness, I can feel their fakeness. That is the part causing me the most anxiety.

There's a knock on the door. I open it, and find my husband holding a large black plastic trash bag, a towel — and a roll of duct tape. This does not look good. The potential crime scene does little to quell my growing angst. I close the door and tell him I'll call him when I'm ready.

But I'm never quite ready. I let another few moments slip by and still I don't feel any better about any of it. And I'm wasting water. So I bite the bullet and call him back in. And we begin the very delicate dance of preparing me for the most vulnerable shower of my life.

Off with the vest. Husband pauses just long enough to review the situation and announce, "They look good." We don't dwell. He continues on, wrapping the folded towel around my neck. I hold it in place while he cuts a hole in the top of the garbage bag and slides it over my head and shoulders. Then he duct-tapes the bag to the towel. I can reach my arms out from underneath the garbage bag (think Velociraptor) but trust me, it ain't pretty.

Husband assists me into the shower and I take my place on the bench. He points the hand-held water spout directly at my head. He'll never make it as a Barber, but he does spend the next five minutes carefully washing my long hair. I don't know whether to laugh or to cry; my emotions are as jumbled as the drops of water streaming down my face. I try my best not to let any moisture get through the garbage bag and onto my bandages. We are only partially successful. Next time will be better.

With my hair complete, I ask Husband to leave me alone for a few. He is reluctant; scared that I will slip and fall (even though I'm seated). Since I'm able to hold the shower faucet at hip level on my own, I want to relax a while and enjoy the warmth of the water.

The freedom I feel in this moment is nearly indescribable. I've made it through surgery. My drains are out. I've had a shower and my hair is clean. I've faced my most dreaded fear — looking at my new self in the mirror — and survived.

I may be sitting on a bench inside a plastic garbage bag, but I'm home, and I'm free (though not home free). I'm latching onto this slice of freedom and not letting go.

Saturday, October 1, 2011

THE HUNT FOR PINK OCTOBER

Exactly one year ago — October 1, 2010 — I had the mammogram that would alter everything. (It's sort of ironic that I found my cancer during the very month that has been hammered into our heads as the month to get a mammogram. So I guess that's the good news.)

Much has been written about the Hunt for Pink October, and prior to being diagnosed myself, I was blissfully unaware of how breast cancer survivors might feel about all this pinkification. My involvement in the surging sea of pink prior to my diagnosis was one of abject commercialism. In the world of women's consumer magazines (where I used to toil), the pages of each October issue were flush with pink products. We had to create 'thoughtful' stories structured around a breast cancer theme, drum up reasons to buy rose-colored, rhinestone-encrusted compacts, and entice readers to want to do downward dog on a pretty-in-pink yoga mat. It was all part of the job. We were providing a service (albeit a branded one) in which women not afflicted by the disease could in some way show their support (via the "percentage of proceeds donated") for those that were. And we were doing our best to educate the masses about breast cancer with our articles. But let's be honest: Advertisers loved seeing their "pink'd" items showcased on our pages — and that kept the wheels of profitability greased and spinning. 

Did I ever stop to think how "Pinktober" felt to a woman who actually had breast cancer? 

No.

Then I got diagnosed. Now I know. It sucks. Pinktober is just one ginormous reminder that I didn't dodge the bullet. And no pretty-in-pink yoga mat is gonna change my status now. 

(Copyright The Big C and Me)
Speaking of hues, who chose pink as the color of breast cancer anyway? 'cause I think they got it all wrong. Blue — now that's a color any survivor can wrap his or her head around. What BCer doesn't feel blue? Not all the time, of course, but I bet we feel blue more often than we feel pink. Yes? No?

You want to see real breast cancer pink? Check out a sistah post-surgery. No matter the color of our skin, our scars are the same: pink.

My one-year marker is the first of many dates I'll be noting in the coming months. The best place for me to reflect on these types of things is on the trail. We had a little rain today, and storm clouds were still swirling overhead, so after dinner, my husband and I went up into the mountains and were greeted by a rosy sunset of spectacular proportion. 

The Hunt for Pink October? I think I may have found it. In shades of blue and pink.


Tuesday, September 27, 2011

WANDA, CHRISTINA AND ME

One of the many benefits (OK, I threw in the word 'many' for affect) of having breast cancer is that I am thrust into a world I would never have been interested in before... the wonderful world of breast cancer bloggers. These women (and a few men) are fighting the good fight and writing about it every step of the way. They may not all be professional writers — but they could be. They are witty and wise wordsmiths; their blogs, a pleasure to read. The discourse that arises on the screen is often cutting edge, and unlike anything you are going to read anywhere else.

To wit: This morning I read a fabulous post by blogger Katherine over at ihatebreastcancer discussing the announcement by the amazing Wanda Sykes on Monday that she was diagnosed with DCIS (ductal carcinoma in situ). Wanda is one of the funniest comics out there, and this news is devastating.

Wanda talked about her breast cancer publicly for the first time on "The Ellen DeGeneres Show" and shared how her cancer was discovered — while undergoing breast reduction surgery, of all things. Though her cancer was caught early (Stage 0), she opted for bilateral mastectomy due to her family history; as Wanda explained, "Cancer is cancer." This is true. But then she went on to say the words that have the breast cancer blogosphere buzzing: "Because now I have zero chance of having breast cancer." And Ellen agreed. But that would not be true. (The zero chance part, that is.)
(Courtesy Warner Bros.)
I'm joining blogger Katherine in being "Cliff Clavin"-esque here because Wanda and Ellen's comments eerily remind me of Andrea Mitchell's comments earlier in September when Andrea was also diagnosed. Andrea stated, "This disease [breast cancer] can be completely curable if you find it at the right time."

Here's the real deal: Whether they have a lumpectomy — a la Andrea Mitchell and Sheryl Crow — or bilateral mastectomy like Wanda Sykes, Christina Applegate and me (gotta throw myself in here, since this is the only time I'll be able to mention my name along with theirs and have it make sense!), when people in the media say they are "cured," they do us all a grave (pardon the pun) disservice because it simply isn't factual. It just isn't true. And it gives people false hope — not just the patients that breast cancer afflicts, but the friends and family of BC'ers too. Catch breast cancer in its early stages and your chances of staying cancer-free are certainly high — but they are never 100%. Ever.

What Wanda, Christina and I (and so many of my BC buddies) bravely did by getting bilateral mastectomies (though our cancers were found in just one breast) is still considered controversial. But that is not the point of this post.

Instead, I want to address the issue of why public figures feel the need to downplay a cancer diagnosis.

I'm pretty sure I know why they do it: Because they are afraid they won't be hired again unless they say they are "cured."

Would it be better if Wanda had said, "Yes, I found my breast cancer early and yes, I had both my breasts removed and yes, my cancer can still come back at any time and kill me"? Abso-f-ing-lutely.

But I also understand why she didn't say that. Part of it is the natural desire we all have to believe we are cured. I get that. But the other part is just as important: She has to worry about her (and her family's) financial future. Just as we all do. Just as we all don't walk straight into our bosses offices and announce that yes, we have breast cancer and yes, we might die. Because if we did, we probably wouldn't be getting that next promotion. That next opportunity. That next big gig. And so we downplay. To ease others' fears — and to ease our own.

It's a gnarly little line that people in the public eye must walk in order to save face. And we already know which side they are gonna take. The side they must: They have to save themselves first. After all (and this isn't the first time I have said this and it certainly won't be the last): They are only human. And trying to keep everything as normal as possible for as long as possible. (Can anyone relate?)

So I'm gonna cut Wanda a wide swath of slack. But I'm also gonna make sure I talk about all this. It is up to us (the "foot soldiers," as the Army of Women calls us) to get the word out and not be under any illusions that bilateral mastectomy is "the cure." Not trying to be a Debbie Downer here; just Renn the Realist.

Maybe at some point down the line, a high-profile personality will pick up a bullhorn when they are first diagnosed with cancer and tell it like it really is. But until that day happens, I'm not gonna hold my breath. I'm just gonna blog about it.

Wednesday, September 21, 2011

HEALING AND DEALING

There is a phenomenon that happens post-surgery, when you’re back at home and cozy in your jammies, trying to heal and deal with your new self-image (whatever that may be, depending upon how severe your surgery). In the case of mastectomy, it presents itself as a layer of hiding. Make that multi-layers of hiding. And this hiding has little to do with whether or not you have started the reconstruction process.

The first layer of hiding is from myself — and any mirrors that may reflect back to me an image I’m not yet ready to behold. I steer clear of all reflective surfaces for the time being.

Next there is hiding from my husband, lest he find me newly unattractive. I feel the need to spare him — and myself — from this moment for as long as possible. This second layer of hiding is easily handled, on the surface, at least, by donning a bathrobe selected for just such a non-veiling (vs. unveiling) occasion. In my case, that would be putting on the pale green robe my husband purchased (unbeknownst to me) while we were vacationing in the Oregon wine country last fall. A trip that will forever be sandwiched between “The Mammogram” and “The 'Come Back' Letter." Imagine my surprise when I found said robe beneath the tree on Christmas morning! That was divine. But it will always be remembered as the Christmas that came after “The Biopsy,” after “The Call,” before "The Surgery."

But wait, there's more: Post-cancer surgery offers up a third layer of hiding, wrapped in the form of friends and/or family — yup, the very people who are your lifeline, your safety net, your thread back to the jacket of normalcy you wore before cancer unraveled everything. They phone or text or email or drop by in an ebb and flow of checking in, checking up, and checking out. It’s all good — except when it’s not.
  • The “checking in” part is great! I can handle that easy enough by text or email.
  • The “checking up” chats I leave to my husband. Those require more verbal acuity than I have the energy to muster at the moment.
  • It’s the “checking outs” that are the most difficult to decipher —and to deal with. I’m not talking about the “eyeball” type of checking out you might expect when people first glance at a newly deflated chest. (That is another post for another time.) I’m talking about complete checkouts of the unexpected and puzzling variety. As in: The calls that never come. The cards that are never mailed. The flowers that don't get delivered.
Don't get me wrong; I am grateful — very grateful — for the kindness shown to (and showered upon) me during these dark and dismal days. But allow me a moment if you will. Complete Checkouts are the people who can’t deal with your cancer — or your vulnerability. They don’t know what to say. They don't know what to do. And so they do nothing — mistakenly thinking that no contact is good contact — or at least better than awkward contact. 

But they would be wrong. Because reaching out in whatever way is comfortable for you means so much to me! Aside from making me (and every person I know who has gone through the BC experience — and it happens to the majority of us) feel ignored and unloved during one of the most challenging times of my life (and let's not even draw the correlation between cancer and death, another subject that renders people silent), here's the really troubling part: Complete Checkouts turn out to be the people you least expect. And they are stealth.

And that, folks, is the dirty little secret of a cancer diagnosis.

Complete Checkouts can make a girl feel like doing a little checking out of her own. (Not in a “I want to die” kind of way, just in a “go away” kind of way.) So that's what I do. Within the plush folds of my velvety robe, I find my safe harbor and my escape. It’s my own Amazing Technicolor Dreamcoat. I slip it on and slip back into the land of yesterday, when my boobs weren’t called foobs and I didn't look like a cross between Barbie and the game Operation.

Still healing and dealing and hiding over here. This could take a while.

Wednesday, September 14, 2011

ARMY OF WOMEN

Thanks to Dr. Susan Love's Research Foundation and the amazing Army of Women, there are oodles of ongoing opportunities to participate in cutting-edge research. I'm highlighting a few noninvasive studies for you to consider participating in if you meet eligibility requirements. There is even one listed here for ladies who don't have cancer. Click the links below for more details. (These studies are time-sensitive, so if interested, get in touch right away. If they're not right for you but for someone you know: share, share, share!) 

DCIS AND BRCA STUDY If you've been diagnosed with DCIS, have a known BRCA mutation, and are over age 20, this research study may be for you. The best part: They are recruiting women from all over the world
ENERGY STUDY The "Exercise and Nutrition to Enhance Recovery and Good Health for You" (ENERGY) study will analyze the effects of diet and exercise on overweight breast cancer survivors. Women must live near the following locations: San Diego, CA; St. Louis, MO; Birmingham, AL; and Denver, CO. 
HOT FLASH STUDY The "Interventions for Relief of Menopausal Symptoms: A 3-by-2 Factorial Design Examining Yoga, Exercise, and Omega-3 Supplementation" study needs women near Seattle, WA — cancer NOT required! — who are between the ages of 40 and 62, peri- or postmenopausal, suffer from hot flashes and not on Tamoxifen or other hormone treatment.
JEWELS IN OUR GENES STUDY aims to understand if there are undiscovered genes unique to African Americans that may predict early breast cancer risk. The "Jewels in Our Genes" study is looking for black women over age 18 who have been diagnosed with breast cancer and reside anywhere in the USA
MEDITATION STUDY If you live near Los Angeles, CA, and were diagnosed with breast cancer after 2001 but before age 50, you may be eligible to participate in a "Mindfulness Meditation-Based Intervention for Younger Breast Cancer Survivors" study.
YOGA STUDY The "Yoga for Breast Cancer Survivors: Effects on Fatigue, Immune Function, and Mood" study needs ladies who live near Columbus, OH, for a research project studying the effects of yoga on (you guessed it) fatigue, immune function and mood.
YOUNG BREAST CANCER STUDY The purpose of the "Breast Cancer Risk in Young Women" study is to learn what role genetic factors may play in the development of breast cancer in younger women. Currently recruiting 5,000 females diagnosed with invasive breast cancer at age 40 or younger who live anywhere in Canada or the United States.
(© Army of Women )

Wednesday, September 7, 2011

DOUBLE DIPPING

Coming home from a bilateral mastectomy is an event — not of the red-carpet, Oscar-worthy variety, but an event none-the-less. I was happy just to smell fresh air, see the sun, sit in traffic. I was going home.

And that's when the party got into full swing. No guests yet (just our two furry barking machines). And yup, a few pretty floral arrangements. But what I was most stoked about were all the accoutrements on my bedside table (see Step No. 5 for post-surgery boudoir table tips). Snacking in bed? Never do it, but bring it on! Watching TV while the sun is still out and I’m still under the covers? (Yeah, baby!) Pain medication? (Par-tay!) Remote control all to myself? YES! Husband feeding me because I can’t use my arms or bear any weight? (OK, that one didn’t actually happen.) But it was a comical side show just getting me in the bed (forget about getting me out of it to use the bathroom). I’m tired just thinking about it.

Lucky girl that I am, Husband has taken two weeks off from work to take care of me. He’s even placed a bell on the nightstand should I need anything. I rang it once. He didn't hear it. Well. It's. The. Thought. Right?

What I remember most about those first few days home were all the odd sensations. I felt supremely uncomfortable. Frustrated. Sweaty. And smelly. And I can’t take a shower until my drains come out. Have I mentioned my lovely drains? Allow me to paint the picture again ('cause they're just so dang much fun). I’ve got four thick-like-a-straw tubes hanging off me, and they each connect to a bulb into which fluid drains. I preemptively bought a Marsupial pouch belt (see Step No. 7), which was an awesome solution: I tuck two bulbs into one soft terrycloth pocket, two bulbs into the other, and my pain pack in the pouch in the middle. (Bought four pouches but only use three on the belt). Oh what a sight. (See purty picture above.)

Husband has been tasked with emptying said drains and measuring their fluid outtake. Actually, he volunteered. (I think.) He’s normally a little squeamish but is handling the drains with surprising aplomb. I won’t go into further detail because, quite frankly, they are icky and gross and I’d rather not relive it. You can thank me now.

Am I in pain? Yes, but mainly because of the drains. They are poking out of my sides. They hurt more than the mastectomy (my pain pouch is working its magic there). I guess the worst part of it all, so far, is the pressure I feel, which can only be described as this: Imagine having two coconut shells (sans the hairy stuff) wired to your chest wall. Then imagine being engulfed in gauze and zipped into a very [un]sexy compression vest. And then wrapped up some more in a fat ace bandage. It's freakin' weird.

(Copyright ©2011 Rennasus)
Because of (or despite) all this, and because I am a good and compliant patient, I take my meds right on the button. And since I am married to a pharmacist, that means he has the pill deal covered. He delivers my capsules and tablets bedside (though I like to imagine it more as poolside), with a glass of water, exactly at the time I need to take them.

But he neglects to tell me ahead of time that this is The Plan.

Now normally upon awakening, I do what I always do: I take a Synthroid tablet. Which is exactly what I do my first morning home. (Remember, I am unaware of The Plan.) Husband hears me stirring and comes in right away to check how I'm feeling. I don't even see him counting out pills; but he folds a few into my hand and gives me a glass of water. I notice there are some different pills in the pile (pain meds and Colace and such) than I normally take. Unfortunately, I don't notice that there also is a Synthroid tablet. In my post-anesthesia brain fog, one plus one only equals one.

So. Yup. Took a double dose of Synthroid. That is not recommended. By the time I realize I've taken mine and his, it's too late. I do have a bit of an emotional meltdown thinking I've just tried to kill myself, but Husband assures me that I will not die from taking two. (I may feel a little warm and fidgety, however. And he would be correct.)

I spend the remainder of the day in a hot flash haze, wearing washcloths dipped in ice water as scarves. And yes, I felt revved. But I also slept a lot. By evening, my double-dipping had worn off.

I stopped worrying about taking my meds after that. Decided I would leave that up to the professional. I just relaxed and became [a] patient.

Sunday, August 28, 2011

HIKING MAKES ME HAPPY

(Copyright ©2011 TheBigCandMe)
"The trail has taught me much. I know now of the varied voices of the coyote — the wizard of the mesas. I know the solemn call of herons and the mocking cry of the loon. I remember a hundred lovely lakes, and recall the fragrant breath of pine and fir and cedar and poplar trees. The trail has strung upon it, as upon a thread of silk, opalescent dawns and saffron sunsets. It has given me blessed release from care and worry and the troubled thinking of our modern day. It has been a return to the primitive and the peaceful.  Whenever the pressure of our complex city life thins my blood and benumbs my brain, I seek relief in the trail; and when I hear the coyote wailing to the yellow dawn, my cares fall from me — I am happy." 
Hamlin Garland (1860-1940), from "Hitting the Trail," McClure's Magazine, February 1899

(Copyright ©2011 TheBigCandMe)
Hiking makes me happy too. The trails are where I go to find and make my peace with "The Big C." Coyotes and saffron sunsets? You bet. Deer and dogs and bunnies too. I love 'um all.





Friday, August 26, 2011

HOW TO SURVIVE AN MRI

Before deciding on my mastectomy, I needed an MRI. I'd had a couple of them in the past: one for my left knee, after I abused it running a marathon; and one for my head, following a run-in with a log cabin while mountain biking in British Columbia. But I digress.
The point is, I remember feeling really claustrophic during both prior MRIs. With the teeming anxiety I was already experiencing with my cancer diagnosis, the last thing I needed was to feel trapped like a caged you-name-the-animal in a big 'ole clicking machine. So I tricked myself into thinking I was somewhere else.
You, too, can survive an MRI — or any other uncomfortable procedure (blood draw, chemo, dentist visit, surgery prep, whatever procedure you are afraid of) — while feeling calm and cool and even fairly collected. I've got it down to five simple steps.
  1. Breath deeply while you're waiting, after changing into that cute little gown, and then while waiting some more. Don't let your mind wander into the worry zone. All will be OK.
  2. Don't be overly ambitious when you walk into the MRI room. Keep your eyes and mind focused on walking towards the machine. Try not to think of anything else in that moment. Do not look around the room. Stay focused on walking towards the machine.
  3. Lay down as instructed and close your eyes immediately. This is key. Get comfortable. Listen to the tech's instructions, but whatever you do, don't open your eyes. Wear an eye mask without metal in it (if they'll let you). Or tie a bandana around you as a blindfold (that way there's less pressure to keep your eyes shut).
  4. Think about your favorite place that is relaxing and joyful to you. For me, it's being at the top of a hill I regularly hike to. I imagine how it feels to stand, feet firmly planted on the ground, arms stretched out to touch the wind. I notice the sun and how warm it feels dancing across my face. With the cool breeze comes the fragrance of eucalyptus. I listen for the sound of birds and hawks in the wind. What's cool is that while you are imagining the details of your favorite place, the MRI will commence. Whatever you do, no matter how many times they ask you to move or flip over, no matter how many times they reposition the machine, keep your eyes shut! Focus on your breathing; it should be slow and rhythmic as you relax into whatever pleasant experience your mind is conjuring up for you. (I used a similar technique as a pre-surgery meditation here.) 
  5. Now sing a song. In your head. This helps counteract the banging and clanking of the MRI machine. Pretend you're in your favorite place and sing to the wind (or the audience, depending). Sing it over and over and over again. With your eyes closed. Before you know it, the tech will be telling you it's over — the MRI, that is. Remember: If you can't see that you are closed in, you can tell your mind you're anywhere.
(Copyright ©2011 TheBigCandMe.blogspot.com)

Monday, August 22, 2011

HEADING HOME

BREAST CANCER LESSON NO. 213: Don’t let your husband go home the first night you’re in the hospital.

Such is how my evening begins.

After enjoying the requisite post-surgical strawberry jello and juice, my husband heads home to feed the dogs and get some rest. It’s 8:00 PM when he kisses me goodbye, saying only that he’ll see me early the next morning. (We neglect to clarify what “early” means.)

My chest is bound up like a Geisha’s feet, and I have four plastic tubes the thickness of straws sticking out of me — two on either side. The tubes are a foot in length; at the end of each tube is a plastic bulb about 4 inches long x 2 inches wide into which fluid drains from my incisions. A nurse comes in periodically to empty them; they fill up fast the first day. It’s gross and smelly.

I also have a pain pack that automatically releases medication through two very thin tubes under my chest. So I have four tubes, four bulbs and one tennis ball-sized pain pouch hanging off of me. (Anyone wanna dance?)

As a fresh-from-surgery patient, I must rely on the nursing staff to help me do everything. (Thank goodness I have a catheter.) What makes this more difficult is that a nurse, in her infinite wisdom and attempt at kindness, has closed my door so I can get some sleep. There is a visitor’s lounge a few doors down from my room, and in the middle of the night, it turns into Comedy Central. Every graveyard-shift employee is stopping by — laughing, eating, chatting on cell phones… a real hootinanny. (At least  that's what my codeine-fueled brain is imagining, anyway.)

My closed door also means I am now isolated. I can’t catch anyone’s attention as they walk by. So my night goes something like this: pain, nurse button, pain meds, BP, drains drained, nap, noise, awaken, lights, thirsty, can’t reach, pillows slip, can’t correct, itchy, can’t scratch, too hot, blanket off, too cold, blanket still off; nurse button, wait, wait, wait. Repeat.

The night nurse's aide — definitely not in the running for Miss Congeniality — is very busy and not very worried about me. I must look like I'm doing well. Her English is also not great. She doesn’t understand what I mean when I say I need her to scooch me back up in the bed. (I can’t use my arms, so it is impossible to move myself; and I’ve slid so far down the bed that my feet are starting to dangle off the bottom.) She is in and out in a flurry. (Again, this is how my brain-on-pain-meds is perceiving it.) I fall asleep with the comforting thought that soon, my husband and sister will be here to help.

Morning comes, as does my breakfast — the first solid food I’ve had in more than 30 hours. I gobble it down. No idea what it was. But my sister should be here soon. I haven’t seen her since before surgery; my husband sent her (and my mom) home when I was having trouble coming out of anesthesia. She’s an early riser so I expect her to walk through the door any minute now.

Breakfast is over. My water and cell phone are nearby. It’s 7:30 AM — too early to call anyone. I watch some television and doze off. I wake up at 9:00 AM and call my husband. He just got up. He says he’ll be here in an hour. I'm bummed. I feel like I've been waiting for him for forever.

That’s when I notice the sign taped to my door: “No BP on left arm.” What? That’s wrong! It’s supposed to be no BP on RIGHT arm! (Because I had lymph nodes removed from my right arm, I can't have my blood pressure taken on the right side.) Oh... so that’s why I had to keep correcting the nurse last night every time she came in and went for my right arm....

These are the details I focus on to pass the time.

The clock says 10:00 AM. I call my sister. Turns out she was intentionally not coming to the hospital this morning to give me time with my husband. Huh? She says she thought my husband spent the night in the hospital with me. I never said that. I ask her to stop by after lunch because hubby will be here any minute. (BC Lesson No. 214: Always ask exactly when someone is coming back before they leave.)

Nearly 11:00 AM now and still no husband. You can guess what I do next. Yup. The tears flow like a swollen stream after the rain.

And of course that is precisely when he walks in. Oh, am I cranky. I can’t do anything for myself! The night nurse couldn’t understand English! There was a party next door! I was completely miserable and hardly slept all night! I couldn't reach anything myself. I couldn't scoot myself up! I couldn't move my pillows! Blah, blah, blah! I pepper him with complaints rather than compliments. But he fluffs my pillow and flips it over to the cool side for me anyway. He gets me my pain meds and some ice water. He fixes the lousy sign on my door. And I start to relax just a little.

My sister arrives. I take my first walk down the hall, notice the visitor’s lounge and put two-and-two together. (So it wasn't just my imagination on drugs!) . My surgeon also stops by to see how I’m faring and is happy with my progress.

That evening, after my husband and sister go home, an absolute angel of a nurse on the graveyard shift appears. She is sweet, she is kind, and she is compassionate. She makes sure I have everything I need and never makes me feel like I am asking too much. She stops by often. She is like a dream compared to the night nurse before her. I actually sleep.

Morning No. 2 dawns, and my BFF arrives at 6:30AM. YAY! I called her yesterday about the mix-up with my husband and sister; thankfully she is an early riser and offered to come visit. After breakfast, we take a stroll down the hall. I’m in a purple robe trailing my IV bag on a hook. We go real slow. I feel weak but I know I need to move. As we round the bend, I see Dr. C., my plastic surgeon, leaning against the counter at the nurse’s station. He’s dressed in street clothes. 

That’s your plastic surgeon?” my BFF asks. I think she is surprised I haven't mentioned the cuteness factor. (She later tells me she would be happy to accompany me to my plastic surgery appointments; she's only half joking.)

Dr. C. walks us back to my room, says I'm doing great and that I can go home. HOME! Yippee! He wants to see me in his office in three days for a follow up, when he’ll remove my drains and pain pack, but for now he is pleased with my reconstruction so far and even offers to show me how I look before I leave the hospital.

Oh no. I’m not ready for that. I want to stay wrapped up in the safety of my bandages a little while longer, thank you very much. I want the “big reveal” to happen in the comfort of home.