Tuesday, October 30, 2012

Breast Cancer Awareness Month... by the Book

Here's a chance to learn about two wonderful women, their medical challenges, and the close ties they have to their families. While I may not go into a lot of detail here that's because I don't want to give it ALL away! What fun would THAT be?

Now you might wonder: WHY oh WHY should I read stories about women with cancer in the first place, especially if I don't have it? And if I have cancer, should I bombard myself more with terms, scenarios, images? And those are very good questions! But really these books are about so much more than illness, these books are about LIFE! In the end, it's about lessons and decisions we all, as women, can relate to.  
The two books I present to you today are about strong women. In fact, for one young woman it was all about saving her life in advance of diagnosis of even what might be the family condition, breast cancer. It is the unsuspecting events in our lives, author Kelly Corrigan points out, that end up making us the grown ups. I would say that is true for the other book and its author, too. I came across that book much earlier and wanted to read it purely because its author Jessica Queller wrote on the Gilmore Girls set. I was (OK, still am) a bit obsessed with Stars Hollow, Luke's Diner, Dragonfly Inn... OK, the post is not about eX-treme fast talkers, coffee addicts, and fall festivals -- as much as I loved 'em!
Defying Destiny, No Doubt 

Pretty is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny by Jessica Queller -- You are not even supposed to evaluate a book by its cover, according to the age ol' saying right? Well, forget that for now. The hardcover book resonates as it features a woman's body covering herself, arms wrapped around one another, elbows crossed, uneven, directly in front of one another completely covering her chest. Only hips and part of her pelvis and neck are still exposed. It's sensuous yet strong as it reflects the title: "defied my destiny." The first part of the title, "Pretty is what changes," is from Stephen Sondheim.
Besides my fascination and love for Gilmore, I was interested in the gene aspect of the book. Even though I don't have anyone in my family with breast cancer, many of you do know I have a genetic condition known as Neurofibromatosis/Schwannomatosis that runs through my Dad's family. I am interested in other people's stories as they battle their own medical challenges.

The author, at 31, faced what is known as the BRCA-1 gene mutation. She had an 87% chance of breast cancer before the age 50 and a 44% chance of ovarian cancer in her lifetime. She had a big decision to make. Leave it all up to God or go have surgery to remove her breasts in order to not face diagnosis down the road. It is an incredible journey the author takes the reader on, allowing us into the most intimate details of her life, her very own body.
The following excerpt enlightened me and allowed me to see I am not alone when it comes to my fears in the hospital and after surgery. It was as if I too could have set these very words on the page! A little too eery this close to a certain holiday:

"Nina and I talked about my choice to undergo the surgeries. [...] The fear had been the worst part. I was afraid I would feel deformed, afraid I wouldn't feel at home in my new reconstructed body, afraid my sexual partners would find me unappealing. Afraid that somehow the physical and emotional consequences of my choice would sabotage my ability to find love. None of this turned out to be the case." -- Jessica Queller, "Pretty is What Changes"

I remember reading this VERY section, highlighting it or underlining it, amazed someone out there felt the same way I did.
I would suggest this book to all new, recently diagnosed breast cancer patients. I would also recommend this book to those who have a genetic disorder. It's also just a great book to read for anyone.

4/4 Pink Ribbons

Daddy's Girl

I guess I'm sort of cheating by including this book. "The Middle Place" by Kelly Corrigan has had such hoopla surrounding it during its publication in 2008 that its hardly fair to bring it out now a few years later. Heck, though, why not? 1) It's a great book. 2) There's a slim chance we may have missed a few people along the way who didn't read it and they will get a chance to discover it. 3) For a "cancer" book, you might laugh more than cry, although the characters are easy to love in this memoir and you get to know them as your own family, so then again don't bet on it. Tissue, have it on hand.
I'd say this is basically for all my gal pals who love to read. I remember giving it to one friend from work in Idaho. I'll admit I was a bit worried to hand over a cancer memoir because most friends want to relax with a romance or a woman's lit title they saw on Amazon or at the big-box store. Deep down, I had a good feeling about it. Still, I wondered how this book fared on my co-worker's reading list. I knew she was a voracious reader and it would get its due near the aroma of a warm cup of tea or three. That was a Friday, I believe. Her bright smile greeted me Monday morning. "I hated it, " she said, jokingly, slapping it into my arms. She went on to say how much she enjoyed the book, the author, and asked if the author had any other books.
Whew! I found another fan! While this author is taking on illness (breast cancer), she is hit with an even bigger scare. She writes about both with honesty and insight. She adds that special Kelly blend of humor and reality. The thread of family is the spotlight here. Members of her family, especially her father, is a character -- one readers will love -- who helps her see things even more clearly. Its her writing style and flavor as an author that makes this a hit. Even listening to her speak (as you will soon see -- *please watch* so worth it!*)  makes you want to be her friend, her BFF! It's definitely different than other illness memoir books I've read. It's comfortable, like comfy socks or the perfect pair of jeans. That's what reading her books is like. How can you resist that? So I try to get as many friends as I can to pick up her book. 4/4 Pink Ribbons

*A few spoilers, though.

The Middle Place

Kelly {Corrigan} Live

Before I {I being Leslie to clarify} sign off, I wanted  to say it's great to celebrate October with a perfume bottle the color of spun cotton candy and shoes HOT HOT pink but please do YOURself a favor, too. If you are not seeing a doctor, please start going. I don't mean dating. Well, dating is OK but you still need to schedule a regular doctor's appointment. And start doing Breast Self-Exams. Part of it can be done while singing the Top 40 hits in the shower! That's not bad, right? Once you get the hang of it, the entire monthly exam is 10-15 minutes.

One more lil' reminder: we must get our girlfriends, aunts, moms and YES even ourselves to schedule THAT mammogram. Do a mammogram phone tree to ensure everyone in your family gets an appointment. No, it's NOT fun to get SMOOSHED but it can SAVE your life. Just ask Giuliana Rancic. BE PROACTIVE. Medical procedures are never the cocktails of our life but they are a necessity. Then, enjoy a mimosa, sparkling cider, or a champagne to celebrate! Cheers!

Honorable Mention Reads: 


* Hoda: How I Suvived War Zones, Bad Hair, Cancer, and Kathie Lee by Hoda Kotb

* What We Have Have: A Family's  Inspiring Story about Love, Loss, and Survival by Amy Boesky

#Autoimmune #Disease

* Two Kinds of Decay by Sarah Manguso

 ©The Healing Redhead

Photos are from this-is-glamorous.tumblr.com & www.amazon.com/ 

Thursday, October 4, 2012

Part II - Let's Put on Our Superhero Gear: The Cape

It's here! Without further adieu...

The latest flare rudely interrupts a day out with family and later a pain jolt nearly rockets me off the sofa  into the ceiling. I am called as if from my body's pager alerting it is time. Pain has arrived once again. It waits for no one and on it comes. Part of the body tenses and breathing turns rapid. I gulp breaths or even hold my breath, awaiting the next pain tremor.

Nerve Pain 101 A slideshow from WebMD.com explains nerve pain in detail, its triggers, conditions that cause it, treatments, etc. 

For me, worry mode begins. I wish I was more chill, say more into meditation or prayer mode. I am trying but my concentration breaks too easily. My thoughts invade like this: "If I have this surgery or that surgery will I finally be better?" or "Time is lost each day. I want to work and I can't!" or the often-times tear-inducer "What about my goals and dreams... Everything, it seems, is gone! My real life has just stopped. The first half of my thirties... Poof!" Talk about a magic trick!

Will I rest tonight? Who knows... Staring at the clock, hour after hour tends to go by, swallowing pain pills every three to four hours. People marvel how I can take pill after pill tiny tablet to capsule without water. I marvel how my liver and my body overall can last this long on such a routine of high doses of opiods accompanied by anxiety and depression medication. I've been taking a dose of hydrocodone off and on pre- and post-surgery since I was 18. I have had to up the ante now the past three to five years given my pain has surged like something from a fireworks stand on the Fourth of July. We're not talking sparklers either!

Day after day of pain, a patient - at least me - is on HIGH alert like after you go see a scary movie or a political thriller - (one of my favorite genres) you are a bit more jumpy or on edge. At least the day after thinking about it. Around every corner, every bend, even sitting in a dark corner, down a secluded hall... For me, I'm propped on the couch, my usual MO, and the burning will come followed by numbness so intense I have to drop the book, magazine or iPad immediately. Fire. Alarm. The surge of pain in my arm is hot, a fire blazing into my hand. Then as quickly turns numb, unfeeling, the fire is out.
Later, another jolt of pain arrives and the ol' body winces with each passing voltage in the knee, back, shoulder, or neck. Instead of body jolts, I want my life jolted back... brought back, a shred of recognition. Something. A flicker of hope... Yet, I know I have a long way to go from where I stand but it is a shorter distance from where I stood months, years ago.

Writing in general makes me feel alive, so starting this blog, The Healing Redhead, has been a blessing this year. I wished I did have more stamina to do more fiction, more of my book or more of my hobbies like exercise, cooking/baking, and crafting. It can get frustrating when I have so many interests and ideas and my body will not cooperate, support me. But that doesn't mean I can give up, right? Right? I can't hear you!

That is where Pinterest.com comes in handy. I may not feel like hiking in Yosemite today (first, I need to get in shape a bit) or even hiking local hot spots, a favorite pastime, but that doesn't mean that the California dream or weekend hobby is lost forever. I surely hope not! I have always wanted to see Yosemite for myself because of Ansel Adams' work. His photographs have always mesmerized me and the way John Muir wrote about the area has motivated me to put this beautiful postcard destination on my ultimate bucket list! I gotta go! Every time I see a photo it reinvigorates my spirit and determination!
Yosemite National Park 

Yo, how could you NOT want to go too?

For years, I have had New Zealand on the list as well! I mean it's hard to resist. I could talk to friends, family and even [blush] strangers about Christchurch and its surrounding beauty. I was INTO NZ! Its tourism board should SO cut me a check. I could go on and on! I even had honeymoon plans and no honey! How funny is that? I really wanted to go! Then, I saw this special on (of ALL things!) a shopping channel {blame my Mom!} about Vienna, Austria. Shock: I didn't buy anything! I did come away with an absolute LOVE of Vienna and its overall aesthetic beauty and its history, architecture, and performing arts. All from a shopping channel. I KNOW! CRAZY, RIGHT? It's not the History Channel by no means but it gave me enough nuggets of info that I started my own discovery of Austria. So move Vienna up that bucket list, y'all! New Zealand got put on the back on the plane, so to speak.

It is so important to have a few dreams you hold close. If you aren't sure what you want, Pinterest.com may be perfect for making a Dream Board or Bucket List Board or an In the Future Board. It can be small items or big items or a combo of the two. I even include a board of supplies, helpful gadgets, facts, inspirational quotes that might be helpful for people with chronic pain. You are welcome to check it out! Find it located on the "The Healing Redhead" board on my Pinterest account. Repin all you like! Remember: You can check out my Pinterest site any time. Just click the big red P to the right. ***If you have a favorite chronic pain product and/or recipe, e-mail me and I will feature it on my Web site and on Pinterest. Of course, I'll give YOU all the credit!*** Just e-mail: lesliee30@gmail.com.

The areas in my body begin burning, jolting, and misfiring. It seem like the Devil's work and I never remember signing a contract with that red monster. The pain zaps in my back and in my leg. After being so patient, I am about to lock horns with that pain scale or whoever seems to be in charge of it. Day after day after day I am met with excruciating pain. I might get a break in between but you know The Pain with a capital P will be back you just don't know when...
It does happen. I finally let loose, l let the tears fall. I may seem strong in public at the doctor's office, grocery store, running to the pharmacy, and generally with people I exchange conversations with at the check-out stand, restaurant table, or at the occasional trip to the yogurt shop. It is a quiet sob and the wetness on my cheeks is cold against the forward motion of the standing fan, oscillating, oscillating. I would never put an enemy through this kind of pain... Well, except that ONE gal from high school... Kidding, only kidding. Seriously, no one should go through this. No one. When nerve pain strikes, it is mind-blowing, the color red, the word blazing, the word unrelenting... It is real & it takes everything a patient has, physical and mental, to endure its wrath.

With Schwannomatosis, the condition (www.ctf.org/) I have, tumors press on and against nerves & that is what causes my nerve pain along different parts of my body. I am wondering, how many tumors I actually have in this 5'9 frame of mine? Yet... Do I really want to know? Doctors have always shielded me from the big number and focused on the case at hand. That's when there's a plus side to the invisible nature of my condition. I don't have to know EVERY detail. I need to be concerned about the ones hurting me and the ones that might turn malignant although I've been told the chances are low that will happen. I still think it is important to stay on top of things and keep going to my doctors and surgeons on a regular basis and do my scans. Although, it is my most dreaded chore.


I press my fingers at different points on my body, searching like a physician or perhaps the TV crime show coroner who investigates a body looking for answers posthumously. Yes, I just said THAT! Wanted to make sure you were listening... or still reading! {wink}

I press just below my hip bone, a-ha, a possible growth. That explains all the pain around my right leg -- one of the areas of pain. When I am in pain, I tend to need quiet around me and I am still, quiet myself. The television cannot be blaring with yet another episode of Law&Order, its special theme song and signature "dun-dun" it is so famous for around the world. Even as much as I love hearing the lil' nugget of pop culture go by, I have to focus on my body and the pain. Instead of hearing the two single notes and breaking into a grin, my teeth clench and my body braces for the next attack. I can't afford a smile right now. If I stay still sometimes, I feel as though... ZAP! ZAP! Two different areas. Zap! In my hand. I feel as though I will be rewarded. With no pain. Not the case this time. Holding still doesn't mean anything for me. It just psychologically helps me make it through the tough nerve zaps, the ones that shoot and arc through my body as if something is chasing it, hunting it down much like so many of the "perps" in Law & Order Criminal Intent, SVU and my new favorite, the British Edition on BBC-Television.


It can be so difficult living day-to-day with these pain conditions, caring for our own families, if we can, dealing with the guilt if we can't, and going to doctor appointment after doctor appointment, scheduling, getting the bills, refilling prescriptions, and just living day-to-day.
My nerves overwork themselves each time in the big waiting room and the little waiting room because you never really know what Dr. _ is going to say or prescribe this time around. I try my best to read or text, distract myself somehow, but I'll be honest, it rarely works whether I have the 8:15 a.m. appointment or the 3 o'clock. I tap my feet and wait for the nurses each time to read the names from the plain folders like we, the patients, are award receipts (how ironic) and later in the little patient room, I'm staring at the plain white door and waiting, waiting, waiting for it open... Then, Viola, the door finally opens! Hooray, by then you feel it is time for a party or cocktail or mocktail at least. You've waited so long.

Even though we might have unforgiving illnesses we still need to make time for laughing, relaxing, working toward goals (big and small), and loving life -- even if that means just a mocktail or a trip to the craft store, that's something! So, even if I didn't see that Law & Order because of my pain I can catch a show spin-off or DVR one, no problem. It's not very hard to find that show on TV! Ha! So, please just spend some quality time with those you love & with yourself. You have to spend that awful time in pain, too, right? You know when the pain triggers and emotions get the best of you. Don't begin to resent yourself. The worst possible thing we can do is give up on ourselves. We might not be able to pursue certain dreams right now but that doesn't mean we can't dream at all, daydream, brainstorm, pin, read, rest, watch, and best: DO at least a little... Enjoy a hobby. Travel to your favorite hideaway or a new place with a beautiful vista, your Vienna, your Yosemite! It doesn't even have to be very far away. There are quite a few places locally I want to see and experience in the coming months. If I do 'em, great! If not, they're on the list for next time! Go at your own pace & have fun! Fingers-crossed, it's a pain-free adventure!

Saving the World
with Capes n' Tiaras
(via Pinterest)
There's a quote I spot every now & again about owning a tiara and a cape and if you had those two items (and wear them!)
YOU COULD / CAN RULE THE WORLD! Some days our capes go missing or we leave the cape at the cleaner's but most of the time you know what? We just have to strap on those invisible capes and do the best we can. We're strong! We battle the beast of pain & chronic illness regularly... And NOT just one month out of the year! This is a 365 days, 7-days-week, 24-hours-a-day (better-believe-it) condition! We have battle scars to show for it! But we are not quitters! We want life, we're in it! So tiaras & capes, why the heck not! Even with invisible illnesses, We Can RULE the world!
Who's with me?

What color is YOUR cape? As Pinterest attests, Glitter is A color! I think I like midnight blue! How about you? **Men, you gotta improvise! You got the cape! Maybe stellar shoes, or a hat that is a show-stopper! Tell me in your comments below. I would LOVE to hear 'em!

Let me just say... Awareness week may be over, but that doesn't mean we stop. If we want the stigma to change we need to educate and make Invisible Illnesses visible by showing the world WE ROCK & that we ARE visible. We need to make our stories visible. So... on days we don't feel good, let people help. I've noticed with my Mom if I tell her how I feel in terms of the pain scale (1-10) she understands better than me saying, "The nerve pain is acting up again." Plus, it helps me to quantify it and compare whether my pain was worse or better than the last pain surge. This may not work for everyone but it is something that can help some patients connect and/or reconnect with friends and loved ones.

While we are communicating that message, fasten that cape & tiara!

It's going to look fabulous on you! Remember, we ROCK!

Before I go, I have song that is special to me that I find inspiring as writer, patient, and simply, as a person. I hope you enjoy it and find some truth nuggets within! It is called... The Cape & its by legendary Texas singer/songwriter Guy Clark. Thought it was a bit apropos given our whole theme here and a perfect way to close this two part series. --The Healing Redhead

Guy Clark singing "The Cape" live with Verlon Thompson in 2010

Monday, October 1, 2012

Pain Awareness Month -- Continuing the Cause Around the Calendar

I found a link today with a great message! Pain Awareness Month... Continuing Awareness & How to Do It! It's a great post I found today and decided I must share with you all. So please take a moment and read. It's really not too long! Have a great autumn day filled with healing goodness! Talk to you later this week!

Pain Awareness Month Part IV - Continuing Awareness