My cross to bear…

Dr. Wendy Harpham of On Healthy Survivorship poses a great question to cancer survivors last week.  She wants to know which stage of cancer was the most challenging?  Diagnosis?  Beginning treatment?  Ending treatment?  Some time in the middle? 

For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning.  I know what she means.  For me, it seemed an exceptionally long time.  I was diagnosed on December 22, 2005 – the Thursday just before Christmas.  Most every healthcare professional was heading out of town.  Certainly no one wanted to take on a new patient over the holidays.  Consequently, I didn’t meet with my new Oncologist until January 3, 2006 and began chemo the next day. 

Those 13 days were beyond horrible.  There was a cancer inside me thriving at my expense.  It seemed to grow bigger every day!  I could feel it.  I swear, I could hear it whisper dark promises of an early death and motherless children.

What bittersweet Holidays that year.  Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year’s.  Why ruin everyone’s Christmas?  The end result, however, was a great burden on our hearts that we couldn’t share with our friends and family.  Each seasonal tradition was painful beyond belief.  Who would search with loving dedication for just the right gift from Santa?  Who would listen to their babbling, aimless words and sift from them their heart’s desire?  Would I ever read The Night Before Christmas to my little boys again?  Would I ever see their eyes alight with the wonder that is Christmas morning ever again? 

The day I began chemotherapy was the. best. day. of the next 10 months.  No more being hostage to fate!  No more victim!  At last I was fighting back! 

Still, I don’t think that was the most trying time for me…  My toughest day was the day I truly started losing my hair and made the decision to shave the rest off.  Until that day I had not really felt ill despite my first round of chemo.  Until that day cancer had seemed vague and ephemeral; death had been theoretical. 

Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp.  Initially, it was funny.  It’s really the strangest thing.  It doesn’t fall out all over the place.  I didn’t wake up with a scalp on my pillow.  All the hairs still look firmly attached but they’re not.  It’s like they’re all held on with Post-It glue.  One little tug and it comes away in your fingers without so much as a “pip” to indicate the separation.  It’s kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way.  A couple of mornings later and it’s not so funny anymore.  I won’t bore you with the details again. 

Losing my hair took me out of the closet.  I became a walking Poster Girl for chemotherapy.  Every time I looked in the mirror I was confronted with my mortality.  The baldness literally stripped me bare.  I couldn’t walk through the store without drawing stares.  My son would beg me to take off my hat to show his friends my bald head. 

With my hair went my vanity, my anonimity and my delusion that I would live forever.  Looking back I feel very, very blessed.

Cross-posted to Mothers with Cancer.

My journey through baldness

I was looking through some old pictures the other night and ran across some from my Year of Cancer. I thought it might be interesting to post the photographic tale of that time…

January 21, 2006
My newly shaved head.
Over my shoulder you can see the wig I bought ahead of time and never wore.

February 5, 2006
The first picture of my bald head.

February 12, 2006
I was still working in this picture and
was picking the boys up from WonderSitter’s house.
February 20, 2006
This was taken when I went home for my step-dad’s funeral.
I had recently gone on disability and you can see
the affect the steroids are having on my weight…
In a few short months my Mom would also be diagnosed with Breast Cancer.

May 6, 2006
Me and my big steroid Moon-Face went to Vegas
to meet my bff from Maryland.

End of May 2006
My first dinner sitting up at the dinner table after
my single mastectomy.
I had been off chemo for about 6 weeks.
My head was developing a nice 5 o’clock shadow.

August 1, 2006
We took Ben to Disneyland for his 6th birthday.
I was half way through radiation and had been taking Xeloda for 2 months.
The wonderful tan is courtesy of one of Xeloda’s side effects: sun sensitivity.
I used a wheelchair in the park as much as possible.
By the end of this weekend my feet had peeled in huge chunks many layers deep
and my underarm was sloughing off it’s radiation-damaged skin leaving a
disgusting, green, oozy patch of tissue in it’s place.
Daddy-O thinks this was my lowest point physically.

September 13, 2006
I was firmly in what I jokingly called “The Dyke Days”.
Everywhere I went the looks of sympathy for a cancer patient
became questionable looks that may or may not have disapproved
of my presumed lifestyle choice. Ha!
My Mom was just entering her Chemo Poster Child phase.

October 3, 2006
Mike and I in Mexico. I felt like I had soooo much hair!
Only 17 more days until I am done with all my chemo!!!

November 23, 2006
Thanksgiving Day
One Month Survivor with many, many reasons to give thanks!

It’s hard to believe that was nearly 3 years ago…

The Journey’s the thing

Three years ago yesterday my whole world stopped. For a split second anyway. Before it was thrust into a strange slow-motion, fast-forward kaleidoscope of cancer treatment and regrets for a future with my children that might never be.

Is there and other phrase that has the same effect as “it’s cancer”? What powerful, life-changing words those are. Normally I would think news of a close friend or relative’s diagnosis would be worse than your own. But after careful consideration, I think it’s far, far worse if it is oneself. Particularly, if you happen to be the mother of young children.

When I heard the words for the first time my heart stopped. Confirmation. My worst fear. I cried.

Was I crying for myself? The prospect of death. The stress of all the medical tests. The relief of finally knowing. The fear of an unknown future.

Was I crying for my kids? Losing their mother at such young ages (that was the only end I could see for them). The confusion and pain they would feel because of me. The scars they would always carry. How those scars would change their lives.

Was I crying for my mother? Hearing that one of your children may die (not a certainty in her context for some reason). Bearing powerless witness as the child you created fights for survival. The pain that would cause – the unnecessary burden.

All those thoughts rushed through my head at once, scorching a path as they passed. Quickly in and out. Shock left in their wake. Mental paralysis. Yet my fingers started typing. As the doctor’s voice relayed test numbers and statistics through the phone to some walled-off portion of my brain, I tapped off an email to co-workers. “It’s cancer.” Even in shock I knew it would be less painful to type than to speak those dreaded words.

I don’t know how long that call lasted, but there was a tight wall of support behind me as I put the phone in its cradle. I couldn’t turn around. I felt marked. Marked for death. An object of pity. Not strong. Weak – in constitution and capability. A failure. I ran away from their concern like a coward .

~~~~~

All through my treatment, I never successfully shook those initial feelings of failure and weakness. I’d failed to remain healthy. I’d failed as a wife; cashing in the vows from our marriage. In sickness and health. Till death do us part. I’d failed as a mother. Would I see my boys grown? Would I leave Danny with a father stretched too thin from providing and filling both parental roles to adequately see to his therapies and education?

Yet I survived.

Chemotherapy made me realize what strength is… and that I have it. It gave me time to work through that onus of weakness and failure. Time to realize that God’s plan was perfect – even for my children. Even if it means that they may have to live without me someday. It gave me time to appreciate my husband for the man that he is and not the one I sometimes wish he was. And to be grateful for those in my life that have always been there for me, and even more that stepped out of shadows and into my life. Mostly, it gave me time to acknowledge my life, my loves and my future… in all its incarnations.

I am so pleased to be here three years and one day later. I am proud of the journey I’ve made. I am grateful that I have been able to walk my boys through a difficult time and prepare them for others in the future. More grateful still that those future tragedies just might not include their mother.

When I look back at that afternoon in December 2005 I see myself consumed with fear. Today I have replaced that fear with power and action. Daddy-O still refuses to mention the “C” word by name, choosing instead to simply reference his worry from time to time, knowing I’ll know exactly what he means. As for me, I talk about it often – stripping cancer’s power and making it my own.

I am more than a Breast Cancer Survivor – I am a Thriver.

New and Improved! Now even better than before!

That’s me. New and Improved.

The obvious, of course, is that experts have worked hard to remove all cancer from my body. As a result, I am now Cancer Free. And we all know that the less ingredients something contains the more it is worth. Today, however, I received an unexpected upgrade.

This afternoon I had my optometrist appointment. The first one in a little over two years. I hadn’t really remembered much from my last appointment. My main goal is always to get my contact prescription refilled and get on with my life. But that particular year, 2006, I was in the midst of breast cancer treatment. I had just finished 8 rounds of dose dense chemotherapy, had just had my first single mastectomy and was regaining my strength in anticipation of 6 months of oral chemo in concert with 6 weeks of radiation therapy. In short, I had other things on my mind than my eyes. So I was a bit nonplussed when Dr. E asked if my cataract had been bothering me.

I didn’t even remember I had a cataract. Once he said it, though, it all did sound vaguely familiar. Something about a very small developing cataract that we were going to keep an eye on…

At any rate, Dr. E settled in to begin my exam. “Let’s get a look at that fading near vision.” He says as he hands me a card with impossibly small letters on it. As he logged my results in my chart it was his turn to look a bit confused. It seems my near vision is better now than it was two years ago. I reminded him that I had been in the midst of chemo last time and under a significant amount of stress to boot. Perhaps that had effected my eyesight. He was skeptical. “Maybe… but that has never been my experience.”

Whatever, I know what stress can do. A bit of blurred vision is the least of the possibilities.

Then he moved on to “get a look at that cataract”. Only he couldn’t find it. You read it correctly. He looked and he looked. He used about three different lights and all but crawled inside my eyeball his own self. Seems I no longer have a small developing cataract.

Dr. E is such a jovial man. It was wonderful to see him all but scratch his head and smile while he said that it just must have been the chemotherapy because there certainly wasn’t any cataract now. He declared me “Too perfect. More perfect than last time.” and sent me on my way.

A little over two years ago I had Inflammatory Breast Cancer, a small cataract, fading near vision, and cough-variant asthma. Today I am cancer free, cataract free, have perfect near vision and no asthma issues to speak of. I’m a advertiser’s dream!

More importantly, I am blessed beyond measure.

Cross posted to Mothers With Cancer

"I Feel Good" (cue James Brown)

I wasn’t a blogger when I had cancer. Mostly I think that’s a bad thing. It would have been interesting to read back over my posts from those first days after diagnosis – to hear the shell-shock in my words. Or those days of chemo and radiation and pure exhaustion. But other days, I feel that it’s all for the best to have those memories locked up inside me in a place that only I will ever see. Overall I am an extremely positive person, but there were some fairly desolate hours during treatment.

All of that only makes me more aware of how far I’ve come. How good things are these days.

I have always had a strong constitution yet the year or so before my cancer diagnosis (when I was pregnant with Danny) I was plagued by irritating physical issues. I wasn’t sick, per se. I was, however, very “run down”. I developed a cough that wouldn’t go away and eventually made it so difficult to catch my breath that I found myself spending New Years Day 2005 in the Emergency Room. This was not my first trip there either. I’d been twice before for the same thing. I would just cough to the point of (wetting myself) and not being able to get any oxygen. The very act of talking was almost more than I could handle at times. Those of you who know me understand how torturous that was. The long and short of it was Cough Variant (Bronchial) Asthma irritated by my pregnancy. Those were bleak days. Hey… maybe that’s why chemo wasn’t so difficult for me. At least I could breath.

So… the point I’m trying to make is this…

Here it is, our End of Fiscal Year at work, and I’ve been working my tail off. I worked 58 hours last week and 56 the week before (including weekends). I go home and have visitation with my boys (that’s what it feels like these days), order in some dinner and collapse on the couch until everyone under 4′ tall is asleep and I can finally go to bed myself. Then it all starts over again the next day. And yet, I feel wonderful. Exhilarated. Tired, to be sure, but good.

I can breathe. That’s always a great thing. I’m not so short tempered as to be a shrieking harridan with my husband and kids. Shamefully, this has not always been the case in the past. And I have enough energy to go to and enjoy Ben’s soccer games, surf the internet and manage my fantasy football team.

It’s funny how we tend to lose sight of our blessings – like good health and abundant energy – in the midst of our work-a-day world. Those all important things that we take for granted until they are pulled from us. Today I am counting my blessings.

Side note: I just got a sad call from Daddy-O. All male members of my household are home sick today. Laid low by head colds.

Cross posted to Mothers With Cancer

How to be happy in spite of it all, part 1

Just after I returned to work after breast cancer treatment, a co-worker paid me an incredible compliment. She told me that I had handled my diagnosis and treatment with (I am paraphrasing here with all the accuracy Chemo-Brain permits) incredible grace and, well, I can’t remember what else, but it was good. The general idea was that I had a wonderfully positive attitude that continued to astound those around me.

I pshawed her, of course. Because, there was nothing graceful about my actions nor reactions. Nothing heroic. Nothing brave. At least I didn’t think so. I was just doing what I had always done during trying times. What I had watched my mother do before me. And my grandmother before her. I put on a happy face.

Sounds simple doesn’t it? Or maybe you’re thinking simplistic is more like it. Well, you’re probably right. When others began asking me exactly how I stayed so positive in the face of a daunting cancer diagnosis and 90% recurrence risk, right on the heals of my finding out my infant was born blind, well, I couldn’t explain it. At least not in terms of usable information. It’s just something I’d been raised doing. I didn’t know quite how to explain the process.

Then I found The Bounce Back Book, by Karen Salmansohn a few weeks ago. It’s a short little self-help book, more along the lines of a pocket manual than a book, but it certainly clarified things for me. Salmansohn has a knack for doing exactly what I could not; break down the process of having and maintaining a positive attitude.

In her book, Salmansohn offers 75 tips for “thriving in the face of adversity, setbacks, and losses.” Many of these tips are a bit redundant, merely rewording the same advice to fit a slightly different situation. Sometimes that’s what it takes, however, for understanding to register. Hearing something many, many different ways. I don’t mean for this to be a book review, yet if I had a friend going through a rough patch and looking for a way to fight negativity, I’d consider sending The Bounce Back Book. We could all learn a bit from it’s pages.

For my purposes here, I will tell you what I took away from this book. That is, I will share with you those behaviors (as identified by Salmansohn) that I have practiced over the years and feel contributed to my success in overcoming the more negative crap life has thrown my way.

The Formula
Each of us has a genetic tendency toward optimism or pessimism, according to The Happiness Project in the U.K. This, however, only accounts for about 50% of our personal happiness equation. The rest is all about what you do and the choices you make. Dr. Jonathan Haidt even came up with a fancy, schmancy formula to become happier. And he’s a Positive Psychologist, or a positive psychologist (I’m not sure which-but I think it might make a difference) so he ought to know.

H = S + C + V

H = happiness level C = current conditions

S = set point for happiness V = voluntary activities

I happen to think Dr. Haidt is on to something.

Family
About that genetic predisposition towards happiness, or not. I guess I must have it. We’re real Nietzsche people in my family, “What does not kill us, makes us stronger.” And boy, oh, boy, have we been getting stronger in my lifetime. I’ve always remembered my Mom laughing off the bad times. She always found the humor in life when I was growing up and still does to this day.

Humor saved the day when I was fourteen years old, sitting in the front row in front of my Father’s casket with the rest of my family at his funeral. As you can imagine, it had been a stressful few days after he’d died, no matter how expected his death was. We, as a family, have always turned to humor in times of stress. True to form, when we noticed that the florist’s shop had placed an arrangement directly in front of my Mom’s chair that was completely bug-eaten, we just couldn’t stop the giggles. I’m sure the entire congregation behind us thought we were sobbing uncontrollably, in reality, we were shaking from trying not to laugh out loud.

We’re sort of wacked, I know. But that outlook has served us well, over the years. In general, we try to always see the humor in a situation. One of my very first comments after my cancer diagnosis, which came close to Christmas 2005, was that I wouldn’t have to worry about what I ate over the holidays because I was starting the Chemo Diet come January!! Woohoo! Holidays, here I come!

My family could have focused on the loss of my dad, instead we chose to break an overwhelming situation down into more manageable pieces. We focused on the insect-riddled flowers to get through the funeral.

Similarly, I chose to see the diet-free holiday season as a silver lining instead of the dark cloud that was a cancer diagnosis. The cloud hadn’t blown away and my dad was still gone but my outlook on the world was much more positive for my efforts.
Cross posted at Mothers with Cancer

Filling a need

You all know my friend Susan from Toddler Planet. Of course you do. Most of you found your way here from there. Well, a lot of moms funnel through her blog. Moms with cancer. There are so many moms out there with cancer… moms that are looking for guidance in their journey through chemo and beyond. And there’s really no place for them on the internet. Most support groups are full of women in their upper 50’s +. They are grandmothers. They aren’t trying to juggle play dates, housework and radiation. Susan had a wonderful idea and she was kind enough to bring me in at the lowest level. She wants to make a place for Mothers With Cancer to gather and share information and support; a place to gain courage and companionship; a place I wish I’d had when I was going through treatment. I’m all in.

We’re going to start a blog called, appropriately, Mothers With Cancer. We have many, many women bloggers who have agreed to be authors. You probably know many if not all of them. There’s Andrea from Punk Rock Mommy, Judy of JustEnjoyHim, Sarah from Sprucehill, the wonderful artist Mary Beth Volpini, RivkA from Coffee and Chemo, and Amanda from AlabamaPink. There are some others that I haven’t heard from yet.

I’m very excited about this project. Keep watching. We hope to launch in a week or so.