Rollercoaster Ride

After seeing Dr. A.J. earlier in the day, I had an afternoon appointment with my oncologist Dr. Moss. The appointment was to check my incisions to make sure they were healed and to ensure that I was ready to begin chemo as scheduled on August 29. Also, Layla, the nurse, was going to explain the chemo procedure, the rules, what to eat, drink and do on chemo, what not to do, the side effects, the drugs I must take to lessen said side effects, and get a tour of the chemo infusion room.

I had a bad feeling that chemo would have to be postponed. I was right. They rescheduled for 9/5. Don’t get me wrong, I’m not overly anxious to have poison pumped through my veins, increase the likelihood of dozens of future diseases, and lose my hair. I needed to get this ball rolling, for several reasons. First of all, I want to put this nightmare behind me as soon as possible. Secondly, I knew that my simultaneous mastectomy/reconstructive surgery couldn’t be scheduled until about four weeks after chemo was over and I REALLY, for reasons I won’t discuss now, NEED to have everything finished and healed in six months (by Feb 8). Period. Lastly, I REALLY wanted to have that mastectomy by the end of the year and save ourselves $6,000 in out-of-pocket expenses that start again on January 1! That’s a semester of Jordan’s UK tuition!

I remembered the first time I met Dr. Moss (who is affiliated with St. Joe Hospital) and she was explaining two different types of chemo regimens. One of them seemed to be the basic 12 week protocol with infusions every three weeks. Four total. The other was called the Dose Dense regimen which included eight total infusions every other week for 16 weeks total). It’s highly toxic (way more dangerous side effects than the 12 week-er). A dose dense recipient has a 1 in 100 chance of developing leukemia as a result of choosing this cocktail (I didn’t know this earlier)! Now, remember, she said this would probably be her recommendation BEFORE she saw the results from my surgery pathology report. She also had recommended radiation because, the last time I saw her, she didn't know I had decided on a bi-lateral mastectomy.

Dr. A.J., my surgeon, who is with Central Baptist, read my pathology report to me, and confirmed that, because I’m having a bi-lateral (double) mastectomy, chemotherapy and two of the four lymph nodes removed were non-cancerous, I didn’t need radiation. This is the standard of care recognized by most all doctors at CBH. This thrilled me, of course, because radiation is 5-7 weeks of daily visits to Highlands Regional or Pikeville Methodist Hospital. I quickly posted the good news on Facebook a week or two ago. Since you’ve probably seen my previous posts about these hospitals, you know that the idea of having the area only a few inches from my heart radiated by one of these people sends me into a full blown panic attack. At the same time, I realize that realistically, I can’t move to Lexington for six weeks for 15 minute a day treatments.

Walking into the waiting room at Dr. Moss’s office, my left breast was still almost double the size of the other one. She called me back and went over the pathology report I had previously faxed her. She said that because one of the two positive lymph nodes that Dr. A.J. removed had cancer cells which had extended beyond the lymph node, she recommended radiation. Again…tears. She recommended that, at the very least, I speak with a radiation oncologist. One could come by and talk to me during one of my chemo infusions. Fair enough.

She then wanted to examine me. I still had that hideous drain with the huge needle pinching my armpit. I couldn’t lift my arm at all, so the sweet woman who prescribes poison, helped me on and off with my shirt and bra. If you ever want to lose all modesty, get breast cancer. She gasped when she saw the shrinking, fading eggplant. “Oh, you should’ve seen in about 10 days ago.” I, of course, grabbed my phone and scrolled to the two pictures that, I’m convinced will someday make it into the big hardcover Guinness Book of World Records 2013. I can see the hologram “Guinness” logo on the cover page next to the $13.88 price sticker at Walmart.

“Oh, Ann, this is not normal. You know that, right? Before we start chemo, this has to go waaaaaaaay down.” I mentioned that they already drained almost a pint of fluid. She said, “I’m sure you have at least that much more in there now.” Let’s see what happens in the next few days.

I mentioned the 12 week chemo vs. the more toxic 16 week protocol. She believed that although the shorter regimen (which also doesn’t include the Adramycin) increased my chance of recurrence 3-5%, it would still be very effective AND decrease my chances of worse side effects down the road. She said, “…and without Adramycin, you don’t need a port.” I hugged her neck, got lipstick on her white lab coat, and almost kissed her right on the mouth. I marched right out of that exam room, drainage tube dangling, and headed for the conference room to meet my posse for chemo class. This time, it was Jeff, Liz, Jordan, and Oriana. Lauren would show up in time for the chemo room tour after work. The nurses always ask if they can speak freely during these conference room visits. Jordan has heard way more than a 21 year-old son should hear about his mother’s breasts. I have, however, refrained from showing him those Guinness World Record photos. He always loved those books, so I’m sure he’ll see them soon enough. It’s always a rollercoaster ride at these doctor offices: No radiation necessary (Yay!), (Worst bruising/swelling I’ve ever seen in 20 years!- huh?), (Shorter chemo regimen/no port necessary-Yay!), (Radiation needed after all-WTF?)….I’m emotionally exhausted and we’re just two months into this!

Layla brings out a book/workbook titled “Chemotherapy and You”. I felt my stomach churn and was glad to be sitting. After signing my life away, maybe literally, Layla took us on a tour of the chemo infusion room. There were about ten comfy recliners, with IV poles beside them. There was a fridge stocked with food and drinks (Jordan would love that) and some seats for friends, posse’s and entourages. It was as good as it could be under the circumstances. I got a lump in my throat imagining the patients with no friends to sit beside them. As soon as I walked in the infusion room, I recognized a familiar face. Then came the panicked feeling I get if I ever forget a face or a name. “I’m Lesa Taylor.” Then it hit me. OMG! This is the amazing woman I’ve been chatting with on Facebook for weeks! Just days after my diagnosis, this total stranger reached out to me and comforted me with her story. I recognized her pretty smile but her hair was different. It was brown but had been blonde in her FB photos. She was diagnosed a year ago with stage III breast cancer. She’s around my age with younger children. During the time of her diagnosis, her son collapsed and she had to spend weeks camped out at the hospital taking care of him. Meanwhile, she was terrified of this cancer growing inside her. They say that God doesn’t give us more than we can handle, but…well…Sheesh. The great news? Her son is fine and she’s cancer free. That day, she came by to visit the infusion nurses who took such good care of her. Actually, I think God sent her to be there with me that afternoon. We hugged, cried, she showed me the ropes, told me I needed to write a book, and I smiled for a few minutes. What a gift.

Just minutes before, I said to Jeff in the car, “I can’t believe I have cancer. I just can’t believe it.” He said, “I know. I can’t believe it either."

It’s as if I’m waiting for my loved ones to poke their heads through my open bedroom window, and wait anxiously for me to wake up from the nightmare. I have a washcloth on my forehead and recognize all the players in this eight week long dream. “It was so real. Pointing to all the people in my life these past several weeks…. ”YOU were there...and you...and even you, pointing to Professor Marvel...er…Dr. A.J., with his Tommy Bahama model hair. He says in his slight accent, “She seems all right now.” He pokes his head inside my window. “You certainly gave us a quite a scare.” I look incredulously at this man whom I remember to be a magician, of sorts. Then my surrogate mother, Liz, puts another washcloth on my forehead, “Wake up, honey. It’s me. Liz. You've just had a really bad dream.”“No. But it wasn't a dream -- it was a place. It was doctor’s offices and hospitals and nice messages on my computer, and phone calls, and I met the most amazing people. And you -- and you -- and you -- and you were there!

Jeff, the smart one with the big brain, says, “Oh, we dream lots of silly things…….” 

"No, honey, this was a real, truly live place. And I remember most of it was awful ...but some of it was beautiful. But just the same, all I kept saying to everybody was, “I want to go home. And they sent me home. (Enter Buddy,who hoists all 90 of his arthritic pounds on my bed.) Oh Liz, where are my ruby slippers? I want to go home!

Setback

Everything seemed to be going fine and then I had to go and celebrate my birthday.  I couldn’t stand looking at the empty refrigerator, the mound of laundry, and the tufts of Buddy hair all over the floor.  I was going to take advantage of a good thing.   (This is where I overlap info from my last blog).  I went to the local Food City and spent over $400 (As I said, we were out of everything.   By the way, $400 doesn’t go as far as you would think.  Groceries are very expensive here).   Of course, putting all those groceries away was quite a chore! 

On our previous trip to Lexington, Jeff had picked up a jar of grape leaves at the local middle- eastern store.  I was excited about finally testing Sylvia’s mom’s recipe.  Weeks ago, when Sylvia’s mom was making her batch of stuffed grape leaves, I quickly scribbled every detail as she threw in unmeasured dashes of this and that.   I remembered her bowl of meaty/ricey/spicy stuff looked different.   I called Sylvia.  “It just doesn’t look the same,” I said.  “Did you smell it?” she said, having no idea that I wouldn’t know what it was SUPPOSED to smell like.  “I don’t smell anything, except hamburger, lamb, and cinnamon.  I already doubled the spice amount like Sandy (her sister) told me to.”  I added another teaspoon of each spice and hoped for the best.  I rolled grape leaves for three hours, put them in a pot and, as directed, slowly spooned ladles of boiling water on top of them.  They at least LOOKED like Sylvia’s mom’s creation. We’d see….I then marinated shrimp and chicken in a “Margarita Marinade” from a recipe in my new Savannah cookbook.  I made some aioli sauce, and was feeling kind of like Wonder Woman.   I vacuumed, cleaned the bathtub, threw some laundry in the washer and realized…Oh crap.  What have I done?  Knowing that everyone would start arriving in a couple of hours, I figured I’d better get in the shower.  I realized that I couldn’t stand for more than five minutes at a time without this horrible pain shooting down my left arm.  It just kept getting worse.  By the day.  I was swelling again, not just my breast, but my armpit felt like it had an apple inside it and I couldn’t put my arm all the way down.  Jeff said, “You overdid it this weekend.”  I couldn’t argue with him.  I had to take some painkillers, and it made me mad.  I despise all of the side effects of these medications.  They defy everything I believe in.  But I had no choice.  I would lie in the bed and shiver. I took my temperature-99.7.  Eh. Nothing to worry about, I thought.  I was FREEZING and it was 72 degrees in the house.  I turned my heating pad on high and put it on my stomach.  My teeth were chattering and so was my stomach (another first).  On my nightstand beside me, I heard my phone chime (text messages) around 20 times. I remember hearing Jeff’s ringtone (You Shook Me All Might Long), Lauren’s (Margaritaville), and Jordan’s (Fur Elise) that day, but I couldn’t reach my phone.  I’m not sure if I even had the energy to swipe that stupid bar to even answer it.   Jeff came home from work that day (Tuesday) and I was out of it.  He popped the thermometer in my mouth and it beeped.  “103.1. I’m calling Dr. A.J.,” Jeff said. “He’s out of town…. remember?”  Figuring that one of his partners had to be in town, he called the hotline.  Dr. Shane returned his call.  I didn’t hear everything, but I do remember Jeff saying, “We’re supposed to be in town Thursday afternoon to see the oncologist…...”

  “He’ll see you Thursday morning.  He’ll probably drain the fluid and put you on an antibiotic.  In the meantime, you can take Tylenol to keep the fever down.”  Two days seemed like an eternity, but whatever. Anything was better than going to Prestonsburg’s Highlands Regional Hospital ER, where I have told my entire family to promise me that no matter what my fever may be or what appendage is dangling-DO NOT TAKE ME THERE!!! From past experience, they all agree with me.  I suffered through the chills and pain, but at least I was alive. If I had gone to Highlands, it would have been iffy.

I couldn’t wait to feel better, so Thursday came very slowly.  I sat in the examining room alone for about 40 minutes, shivering violently.  The fever was only half of it.  At that office, they give you a paper napkin to wear. It opens in the front.   Really?!!! I tore the first one trying to put it on, so I searched all the drawers looking for a new one. I imagined the sight if Dr. A.J.’s partner walked in and I’m shuffling around the exam room, topless, with my eggplant colored boob, looking through their drawers!  There they were. A whole drawer of blue “one size fits no one” paper napkin vests.  In reality, I needed help just getting the damn thing on!  I couldn’t lift up my arm…at all.  I finally got it on and looked in the mirror across from the examining table where I was sitting.  I had to laugh out loud.  There was this big gap where it opened in the front and I was sweating from the effort.  I pulled it as tight as I could to close the gap, grabbed my phone out of my purse and snapped a “selfie”.  I quickly messaged it to Jeff and Liz, just feet away in the waiting room. Attached was the message, “One size fits no one”.  I turned my ringer off, set my phone on the chair, and laid down on the table in the fetal position. Then the door opened. 

“Hi. I’m Dr. Shane. I talked with your husband the other day. What’s going on?”  I could tell immediately that the guy had the bedside manner of a robot.  I’ll bet the da Vinci robots were more friendly.  But I was used to Dr. A.J., all handsome with his salt and pepper curls.  He always looks me in the eyes when he talks to me, stands beside me and shows me the reports, and deciphers every word into layman’s terms.  After that, he’ll gives me a copy of my record. Right then. 

The robot had his nurse Susan with him.  “I don’t know. You tell me.  You think I have an infection?”  I wasn’t about to tell him that I cleaned the house and fed an army after my lumpectomy/lymph node dissection surgery.  I didn’t want him to tell me what I knew at the time…”You are an idiot!”  I would surely burst into tears.

Lie back and let’s see.  “Wow. That’s quite a bruise.”  Lying flat on my back is quite a sight.  My normal right breast, a hefty D cup, flattens out and spreads out, mostly toward my armpit.  The newly, (hopefully) cancer- free one is about double my normal size and pointing straight up like a pyramid of Egypt.  From the crease of my armpit and down a few inches, begins the hills of Appalachia.  Curiously, much of the pain runs the course down to my elbow, on the inside of my arm.

“We’re doing to need to drain this.”  Whew.  Music to my ears. He took my arm and lifted it over my head. I cried actual tears from the pain.  He said, “Just do the best you can.”  I was excited at the thought of getting some relief.  He numbed the area with some Lidocaine and inserted a huge needle.  I looked away.  I winced from the enormous pressure, felt a hot liquid oozing down my side.  Then I heard this loud splashing sound.  I can’t say it was instant relief because I still felt pinching from the needle.  The robot slapped a bandage on me.  I turned my head back around in hopes of seeing matching boobs.  Despite the fact that they drained almost a pint of liquid from my armpit/breast, the only difference I could see was that the hills of Appalachia looked smaller…and there was a FREAKING DRAIN tube hanging from my armpit!  There was a bulb dangling, and I knew I was in for a long few days.  “How long will I have to have this?” Dr. Shane said I needed to come back Monday (four days away!), the day I was supposed to get my chemo port installed.  He prescribed more Lortabs and some Augmentin as a prophylactic antibiotic...”just in case”.  Ugh. “By the way, I’m cancelling your port install, for now.” 

Susan the nurse stayed behind and gave me lessons on measuring and caring for this new monstrosity.  “That’s some bruise, sweetie.” I immediately liked her.  There’s nothing like a good shot of empathy and validation.   “Could you please hand me my phone? I have to show you something?”  I scrolled through my pictures, trying to find the two photos, which when flashed to select friends and family, always elicit loud gasps.  Susan did not disappoint. “Honey…I’ve been doing this a long time and I can honestly say that when it comes to bruising and swelling, you take first place.”  I smiled because, well… I’m an overachiever.

49

After another eventful day in Lexington, we drove to Liz and Barry’s to crash for the night.  I walk in the dark kitchen and see a gift bag, cards, a cupcake with a lit candle, and a musical tiara.  Just what every princess needs for her upcoming 49^th birthday!  Liz noticed my purse wouldn’t hold all my stuff, so she bought me a bigger one. She remembered when I commented on the perfect color of her Clinique Chubby Stick lipstick, so she made sure I had one too!

Jordan just got a new job waiting tables at Saul Good.  Liz asked him what he had to wear for his uniform.  The next thing I knew, she had bought him some new pants from Gap!  The woman is the most generous soul on the planet.  She says she loves me and wants me to focus on getting well, not on the small stuff.  I don’t know how I will ever repay her. 

While Jeff was at work and I wasn’t on pain medications (I was feeling pretty good, relatively speaking), I decided to go to the grocery and stock up for the weekend.  I couldn’t imagine, after all he has had to do recently, asking him to shop for a cartful of groceries on his way home from work.  Lauren, Jordan, Jesse, and Oriana were planning on coming to Prestonsburg to celebrate my birthday, and we were out of everything.  I went to the local Food City, just three miles from home, shopped for nearly two hours, loaded about 40 bags into my tiny Mini Cooper (with the incredibly heavy door I had to push open with my foot), and drove to the post office.  For those of you who live in suburbia, and have never had to drive to the local post office to retrieve or drop off your mail, you must know this:  it’s a huge inconvenience… and a blessing.  Seeing Anita and Vanessa’s smiling friendly faces each morning brightens everyone’s day.  Thanks to Facebook and small town chatter, they knew about my breast cancer diagnosis before my family doctor got the news.  No joke.  Vanessa recommended a book for me (which I purchased and have read a few chapters) and both ladies say they pray for me every day.  Sigh.  It’s funny how an illness has a way of forcing us to slow down and pay attention to the important stuff like love and prayers and people.  Walking like Tim Conway as the old man on The Carol Burnett Show, I shuffle back to my Cooper with several days worth of mail.  I sift out the eight or nine envelopes (bills) from Central Baptist, Humana, or St. Joseph Hospital, and a letter from my insurance company denying coverage for the $4040 BRCA gene test. I toss them all in the passenger seat and open a get well card from The Kentucky Lottery’s Madisonville regional office.  There were a dozen messages of love and get well wishes.  As I read each one, I imagined each of their faces and it made me cry.  I opened up the next card to find it was a birthday card signed by the same group, and then a card from my buddy Larry at the corporate office, who always makes me laugh.  My cousin Karen, an oncology nurse in Asheville, told one of her cancer patients about me. She sent me a card with kind and encouraging words written on BOTH sides of the card. Along with it, she enclosed her phone number so that I could call if I needed a friend.  OMG! I consider myself a pretty thoughtful person, but I’m beginning to realize I have a LONG way to go!   Missy, a childhood friend, sent a card with a heartfelt message.  She said she struggled with words, but they were perfect all the same. Jim, a lottery customer and friend, wished me a happy birthday.  Sylvia sent me a birthday card with an Orange Leaf gift card enclosed.  I immediately started thinking about Brownie Batter froyo covered with chopped bananas.  Mmmm.  I wondered how she knew, and then I remembered my recent blog post before my surgery.  I’m so lucky to be surrounded by people who not only love me, but remember what I like!   I opened a box from my former childhood next door neighbor, Bev.  Although I hadn’t seen her since 1979, she sent me a bonsai tree!  She knows how much I love gardening!  There was also a package from Sylvia.  In it was a card saying that I had mentioned chocolate truffles in my blog (I actually dreamed about them the night before my surgery- who else besides me dreams about food?).  Sitting in my car alone, I squealed out loud and looked for the pocketknife on my key chain so I could open that box NOW!  While chomping on a gooey chocolate ganache truffle, I opened a box from a co-worker named Sherry, who has officially appointed herself my cancer survivor cheerleader in Louisville.  She shipped me a funny book called Look Before You Leap- A Frog’s-Eye View of Life’s Greatest Lessons by Kermit the Frog.  She included a stuffed breast cancer teddy bear and a cheerleading pom-pom so I won’t forget that I have her… a LIVER cancer survivor… cheering me on throughout my treatment.  This was all from a co-worker whom I have spoken to only a few times…ever! Wow. What an amazing woman. 

I have a cheerleader!

I opened so many more birthday cards from family, co-workers, and friends-old and new.  I was feeling the love.  I knew I’d better drive home before I saw someone I knew walk past my car window.  I already had a growing pile of wadded up Kleenexes in my floorboard, and I didn’t have the energy to explain my tears.

In my family, both now and throughout my childhood, birthdays have always been a cause for celebration.   We can all count on lots of food, presents, and games to entertain us throughout the weekend.  Lauren and Jesse gave me all kinds of organic bath products and a blanket printed with some recent “special” family photos. 

Our iPad photo booth creations..on a blanket!

  Jeff gave me a keyboard for my new iPad and Oriana made me some miniature ceramic birds for my Victorian dollhouse I’ll buy some day.  Jordan created a funny card and enclosed a print of the two of us together.  I was touched that the photo meant as much to him as it did to me.

For the Breaking Bad fans out there...

Several times throughout the weekend, I found myself wondering if our birthday celebrations and family traditions, in all their ridiculous detail and splendor, would continue without me.  I had no doubt that they would.  It made me happy and sad at the same time.  I looked at Lauren, my compassionate, sensitive mini-me, who has grown into such a responsible young woman.  I marvel at her sign language skills and wonder what it would be like to spend a day with her at work.  Beside her, sat her new husband, Jesse.  I smile knowing that my son-in-law is a computer programming genius, will graduate in December, and soon be the next Steve Jobs.  Before long, they’ll begin their own family and I say a silent prayer that I’ll see their children’s children someday.

Lauren and Jesse April 2012

I felt like I was watching a TV show of my life, only in slow motion.   We’re all sitting at the dinner table and laughing hysterically at Jordan.  He’s truly one of the funniest people I’ve ever met.  Lauren and I agreed that with his flair for accents and ability to impersonate people and their facial expressions, the guy could be a regular on Saturday Night Live.  Thankfully, he doesn’t spend all his spare time in comedy clubs working amateur hour.  His goal is to read 75 books this year (increased from last year’s 50), many of them classic literature.  He’s majoring in mechanical engineering and wants to make underwater robots.  I’m sure there’s a more technical name for it, but it eludes me now.  I look at his beautiful girlfriend Oriana, with her jet black ringlets framing her flawless complexion.  Jordan’s sense of adventure and humor combined with her creative artistic skills and enthusiasm means that they’re never bored.   I say another silent prayer that Oriana will always be a 

part of our family.

Jordan and Oriana August 2013

And then there’s my Jeff.  If there’s one thing in my life I’ve done right, it’s to have married that shy boy from eastern Kentucky.  I said “boy”, but having just turned 22 when we met, compared to any other guy I knew, he was light years older in maturity and wisdom.  An “old soul”, some would say.  But he had to be.  His father died when Jeff was 12 and his mother would pass away just three months after we met.  Since then, he’s buried all three of his siblings: Gary, Phil, and Steve.   He deserves a break. Unfortunately, he’s under more stress than ever.   One of his two secretaries recently quit and he’s juggling mounds of paperwork and driving me to doctor appointments.   Thank God he finished his novel around my “D-day”.    You can see it at Amazon.
They say there are no accidents.

I can’t help but remember that broiling hot summer day in 1986, when I wore a long sleeved wedding gown embellished with pounds of pearls and beads (ok. It just felt like it).  Being the bossy one, I wanted us to say our vows and not repeat them after the minister.  I thought it would be more special.  Why I thought that I have no idea.  I still remember those vows: “I, Jeff, take you Ann,  to be my wife, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part.”  Sickness and health?  Never in our wildest dreams could we have imagined what would be happening 9935 days later.  He would be dressing me while trying not to dislodge a drainage tube.  For those of you wondering if I actually calculated the days on my calculater….Nope. There’s an app for that.

June 14, 1986

Drainage tube?  I’m sure you’re wondering that you might have missed something.  No.  Just a teaser ‘cause I want to leave you hanging.  It’s the writer in me, I suppose.  It’s just a little way to celebrate my two month “cancerversary”.  More soon.  It’s tough to compose a coherent sentence while medicated…..

The Elephant in the Room

My friend Cinder read recently that oncologists, when giving the cancer diagnosis to their patients, are rarely asked "Will I live?", but are almost always asked, "Will I lose my hair?" 

When the bomb dropped on me, I think my first thought was about my dad who died of cancer when Jordan was two years old.  He doesn’t remember him.  Will I see my grandchildren?   I’m not sure which thought came next - losing my breasts or losing my hair, but all three of those thoughts would probably terrify most women.   When I was inconsolable over the idea of chemo, the nurse practitioner at St. Joe Breast Center said, “I hate my hair but the idea of losing my hair is much more traumatic than losing my breasts!”  Wow. That was brave of her to make such an honest statement.  Over the past several weeks, one of the first questions people ask me is, “Did they catch it early?” or “Will you have to lose your hair?”   Most of the time, it’s the elephant in the room and everyone is wondering about the hair.  They’re just afraid to ask. Afraid I might collapse into a sobbing maniac at their feet. Well, I doubt that would happen in public, but I venture to say that when the day comes and it’s time to shave the head, I won’t be Demi Moore in G.I. Jane.  I won’t look like her and I certainly won’t be brave like her.  Of course, she IS an actress and she did get paid a lot of money to watch those long gorgeous locks fall to the floor.  Check out Melissa Etheridge perform the tribute to Janis Joplin at the Grammy’s in 2005 http://www.youtube.com/watch?v=hXlaeVDd_Tg  . With her head completely bald, she belted out  ” Piece of My Heart” just days after her last chemo treatment.  I’ve watched that video at least ten times before my diagnosis and ten times after.  She’s unbelievable. Amazing. Inspiring.  With a nicely shaped head.  But I’m not her.  Let me tell you who I am.

I’m the one who, for years, went to get my hair cut and said I want the ends “barely nipped, because I want to let it grow”.  I would see an inch of black hair on the floor and say, “Really? Is that just nipping the ends?”  Lauren would try to talk me into trying something different and I said truthfully, “I see many different people all week long.  My hair is the one thing I get at least one complement on each day. So, if I ruin it, it’s all I’ve got. Yes. I said it. Out loud. It was during a moment of weakness.

Last year, when we were planning Lauren and Jesse’s wedding, I was contemplating a new look.  I went to Cha Cha’s in Lexington, and the owner Jason could see my type coming a mile away.  I wasn’t going to be the fun, adventurous type customer who would say, “I trust you. Be creative. Do something crazy!”  He could tell right away that I’d be counting millimeters on the floor.  When I mentioned some subtle highlights to add some dimension and give me a softer look, he suggested that we not do anything drastic and simply add a few more highlights each visit.  So, I left that day with a few caramel highlights that could only be seen in the sunlight with my head tilted to the southwest.  It was perfect.  With each visit, I’ve gotten more highlights and love the new color and style.  I even mentioned that to Jeff not long before D-day. He’s always telling me that women are never happy with their hair. I proved him wrong that day.  He was surprised and laughed out loud.  I obviously don’t pay myself many complements.

If she loves you...heck, even likes you, my sister Gail is more loyal than a golden retriever.  She would adore that comparison because it’s a fact: No one on the planet loves animals more than my sister.    She told me just weeks after my diagnosis that she was going to shave her head when I lost my hair.  Gulp.  I didn’t know whether to laugh, cry, or punch her (We’re sisters. We do that.).   I’m incredibly touched, but I begged her not to do it.  She has pretty hair.  If I thought for one second that she would regret it, it would upset me. Her misery wouldn’t make me happy.  But I am so grateful to have someone in my life who would make that sacrifice.  

After the trip to Stuarto’s (the oil shoppe in my Serendipity blog), it was time to meet Liz and the kids at the Hair Institute.  It wasn’t just a wig store, but THE wig store.  It was the Patron of Tequila, the Armani of suits, the Ferrari of cars…only there were no wigs in this showroom.  “Eric” would have to bring them out one at a time.  Not quite what I envisioned.  Even Jordan showed up for some fun.   I just want something that looks just like my hair now, doesn’t look like a wig, and is comfortable.  Eric said that if I want hair that was my length (13 inches), I would have to choose a human hair wig.  He brought out one that appeared to be close to my hair color.  It was all one length (very long) with no bangs. Eric said that they have stylists who will cut and style it exactly the way I want it.  I dreaded putting the wig on my head. I just knew it was going to feel like all of the scratchy Halloween costume wigs I’d worn in the past.  “The wig weighs less than an ounce,” Eric said. That’s less than an envelope!  Ok. Let’s take this for a test drive.  I put my hair back but left my bangs out so that I could see how closely the color matched.  It was hard tell where the wig ended and MY hair began!  It was soft, lightweight…..and pleasantly surprising.  The nurses, doctors, and Breast Cancer Navigators from St. Joe and Central Baptist say that most insurance companies pay for wigs, or at least a portion of it. We’ll see.

That's Liz and Lauren in the mirror, along with the consultant Eric. He just happens to look like Jeff in this photo. 

My 2nd choice :)

Serendipity

Serendipity.  I love that word.  I remember asking my mom the meaning of it when I saw the neon-lit sign hanging in the window.  Serendipity was the new ice cream parlor in town.  “It means a happy accident,” Mom said.  The definition on Wiktionary:  “An unsought, unintended, and/or unexpected, but fortunate, discovery and/or learning experience that happens by accident.”   Maybe a better definition would be: divine intervention.    During these past few weeks, I’ve become acutely aware of all of the blessings (divine interventions or otherwise) that I’ve experienced each day.   It is my belief that life is meant to be a school for each of us to learn all of the important lessons in life: love, forgiveness, honesty, patience, gratitude, faith…   

While in Lexington yesterday for my doctor appointment, Liz and I went to Chevy Chase looking for a wig shop named Josephine’s. It turned out NOT to be a wig shop but a “POST MASTECTOMY” shop.   One needs anti-depressants before walking through that door!  A few doors down, we noticed a specialty store named Stuarto’s which sold flavored olive oils, vinegars, salts, and sugars.  “Ooooh.  Let’s check it out,” I said to Liz.  We immediately grabbed some of the small sampler cups and tried unsuccessfully to dispense a few drops into the cups.  The sample cups runneth over.  Liz had about a half an ounce of truffle oil in her cup.  The manager walked by and said, “You’ll never use all of that. You need to ask for assistance.”  She then pointed to the signs that were posted all over the store- “PLEASE ASK FOR ASSISTANCE”.  Liz, as if to say, “I’ll show her!”, downed that cup of truffle oil as if it were Patron tequila.  I snickered, egging her on.  The manager asked what flavors/combinations we’d like to try and stressed the importance of asking for assistance.  It was for OUR protection, she said.  Liz and I rolled our eyes.  We decided on a few different oils and flavored salts and began the checkout process. “Could I please have your e-mail address?  We have small cooking classes and would like to send you notifications.”  I commented to Liz that maybe we could do that between chemo sessions.  The manager then asked me if I had cancer.  As always, I openly answered her questions.  Like most women, she wanted to know what the tumor felt like, if I could detect it in a self breast exam, and if it hurt.   She was also knowledgeable in some alternative cancer treatments like Burzynski’s Clinic in Houston, TX and the Gerson therapy in Mexico.  We discussed this briefly and she seemed shocked that I’d chosen the orthodox method of treatment.   I told her that I’ve learned that you never know what you’ll do until it happens to you…and I pray it never does.  Her eyes welled up with tears and she gave me a big hug.  Not a typical hug that lasts a few seconds.  She hung on to me like I was suited up with armor to battle the enemy for a fight of a lifetime.  This woman, who Liz and I had mistaken as a snob, was actually a loving, kind, gentle soul who was placed serendipitously into our day.   A happy accident?  A learning experience? I’d say most definitely.   

More Good News!

What a beautiful day, in every sense of the word.  Today was my follow up appointment with my surgeon, Dr. A.J.  He was, of course, going to check the incisions and then review the pathology report.  Six days ago, he removed the cancerous lump and lymph node, as well as 3 additional lymph nodes to see if the cancer had spread.  Although I had had a PET scan a few weeks prior, and cancer was present in two locations, it’s possible that small cells in additional nodes wouldn’t have shown up in that report.  This new pathology report would determine whether I would need radiation….or not.  Needless to say, I was praying for “not”.  Of course I wanted to avoid all of the possible side effects of daily radiation, i.e. shrinkage of tissue, even more fatigue, lymphedema, heart problems (more common if left side of chest is radiated), rib fractures, radiation pneumonitis, brachial plexopathy, and worst of all…the possibility of more radiation causing a SECOND cancer!  Adding to my anxiety was the idea that I would have to wait a year after radiation to schedule reconstructive surgery.  I just want to put this nightmare behind me...as quickly as possible!

Dr.  A.J. removed the bandages and, despite the deep purple eggplant color of my entire breast and underarm, was quite pleased with his work and my progress.  I can’t imagine what a breast would have to look like to concern him.   He said the swelling and discoloration would get better each day and not to worry.  Then he pulled the pathology report from my file.  He said that he removed quite a bit of tissue during the surgery.  The margins were clear, meaning there was no cancer in the tissue surrounding the tumors.  Of the four lymph nodes removed, two of them were cancerous.  My heart sank. Oh my God. There’s another one that didn’t show on the PET scan.  Dr. A.J. said that with chemo and a bi-lateral mastectomy, radiation wouldn’t be necessary.  Thank you, God!  So now…here’s an idea of our timeline:

8/26   Chemo port surgically implanted

8/29   First chemo session (provided that incisions have healed).  Have 8 sessions every other week for 16 weeks. Last infusion should be 12/19.  Wait three or four weeks then have a bi-lateral mastectomy with reconstructive surgery (at the same time).  Dr. A.J. removes the port during that surgery.

It’s amazing the difference a day can make.  I looked back at yesterday’s post this morning and realized that me posting a blog on Lortabs is the equivalent of drunk dialing.   After seriously considering packing up the keyboard until I climb out of my vat of self-pity, I realized that it would defeat the purpose of this blog:  to express myself and possibly help others who might be experiencing a similar health crisis.  To edit myself would be a great disservice to us all.  So, sometimes, I won’t be inspiring…or funny.  I’m just going to be sad.  But, at times, aren’t we all?

Melons and Eggplant

Thank God it looks worse than it feels.  My left breast is the color of an eggplant and the size of a cantaloupe.  This is progress.  Over the weekend, it was resembling a honeydew melon.   My two incisions feel like clothes pins are pinching them.  The painkillers work, but I don't like taking them during the day.   Dr. A.J. said that I need to keep ice on it and wear a sports bra to keep it bound tight and restrict movement.   A sports bra????!!!  Ok.  I'm a big breasted woman who has never jogged in my life.  Therefore, I've never needed a sports bra.  Wait. That's a lie.  I jogged one time. 

 It was 1984 and I was 19 years old.  I had mailed applications and resumes to many different airlines in hopes of a career of flying the friendly skies.  Jeff and I had just met a few months before the letter came in the mail.  Eastern Airlines was flying me to Atlanta for an interview for a flight attendant position.  Back then, it was standard procedure to weigh all applicants during the interviewing process. Gulp.  I knew that the very top of the accepted weight range for a 5'8" female flight attendant  was 140 lbs.  I stepped on my mom and dad's bathroom scale: 150 pounds.  My interview was nine days away.  I jogged at least a mile every day and ate nothing except one tangerine a day....for nine days.  My new boyfriend (and current husband) Jeff tried to appear supportive when I told him about the interview and the reason I couldn't eat out for a week.  Without Jillian Michaels screaming in my face, I managed to lose 11 pounds that week!  Eastern Airlines flew me first class to that interview, while I declined free danishes and donuts during that morning flight.   My "interview" was actually a group "screening" process with over 150 applicants and two positions to fill, where we each stood up for a few minutes to talk about ourselves.  I was crushed.   At 19, I thought this was my only opportunity to travel the world.  

  

I guess the point I was initially trying to make was...do they even make sports bras the size of honeydew melons?  I decided to save myself the humiliation of shopping for one and had Jeff wrap my chest with an ACE bandage. Thank God for one size fits all ACE bandages. 

Lauren sent me a text last night wondering about my "birthday plans".  I turn 49 on August 19. I've never been one to lie about my age (once I hit 21, that is), or "forget" my birthdays but this one is hitting me hard. It has nothing at all to do with the looming half a century/golden/AARP big "five oh" around the corner.  It's the devastating sadness which seems to be happening to me every ten years.  When I was 29, my dad died. When I was 39, my mom died, and now.....49 is only days away.  I just feel…sad.