Putting on the Pink

Ironically, Danny first refused to nurse on my right breast in October 2005– my first sign of cancer.  It’s appropriate that I ended my breast cancer treatments nearly three years ago during Breast Cancer Awareness Month.

It took me only five weeks to realize that something was wrong with my body. The last normal weeks of my life.  It took another four weeks for a breast exam, mammogram, ultrasound, surgical appointments, fine needle aspiration and finally, a core needle biopsy, before my diagnosis on December 22.  Merry Christmas.  Nine weeks.  And life is never the same again.  Nine. Short. Weeks. And every month since has been Breast Cancer Awareness Month.

So I’m putting on the pink for the month of October.  I hope it helps even one woman do a self-exam!

In the meantime, however, I have a website to share with you.  It’s called The Urban Dictionary.  It is a dictionary of slang.  Like Wikipedia, Urban Dictionary is publicly defined site.  As a parent I find this site extremely useful.  As an ex-kid I find it irresistibly entertaining!  In that light I offer you a few of my recently found favorite slang words.  See if you can figure out which one I submitted…

 Cybercondriac:  An individual that reads symptoms of illnesses on the net and begins to believe they’re sick.

Half your age plus seven:  A dividing-line / rule, whereby one may not make a Romantic/erotic/sexual move toward someone who is not at least half one’s age, plus seven more years.  Ha!  My co-worker is forever quoting this rule.  He swears that since he is 30 it is ok for him to date women that are 22.  Makes perfect sense until you reverse it.  By this calculation at 43 I should be able to date a man twice my age less 7 years.  That’s 72 years old!!!!! Gah!

Restless Lip Syndrom:  When a person keeps interrupting a conversation and can’t keep their mouth shut.  Hee…  I know a few who suffer from this.


Sticker Paralysis:  The effect caused by having a really awesome sticker and no appropriate place to use it. General symptoms include keeping the sticker in a drawer and never actually using it. Sometimes resulting in affixation remorse.

Nipple Envy:  What a woman feels when she sees another woman’s nipple erection and hasn’t completed her post-mastectomy reconstruction.  I so suffer from this!!!!!

Pisshap:  A mishap involving urine, usually after a mass amount of alcohol has been consumed.  This one has worked its way into my every day conversation!!!!!  And that’s kind of sad…

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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…

Well, that was disconcerting…

I just finished watching an episode of Mystery Diagnosis. Not my usual TV fare but this one was about Inflammatory Breast Cancer, or as they called it: “The Breasts That Changed Color.”

The show told the story of Amanda Nixon who at 27 years young found her breast hardening and changing colors shortly after breast reduction surgery. This is a new twist on the typical IBC tale. The vast majority of IBC patients are either pregnant or nursing when misdiagnosed with mastitis.
Four years later Amanda is cancer-free and very active in the fight against IBC. She has beaten the odds… so far.

I’ve never really heard hard statistics on the IBC mortality rate. I just knew it was very high. Well, tonight I heard the official stats. A mere 40% of IBC victims are alive 5 years after diagnosis. Only 30% by 10 years. !!!!!!!!!!!!!!!!!!!

Here are some more numbers for you. One in eight women will be diagnosed with breast cancer in their lifetime. Of those women, one in ten will be under age 40. Cancer in younger women is typically more aggressive than other cancers.

Although those numbers are frightening, as an IBC survivor I have them embedded in my psyche. What I found disconcerting is that there is not standardized triage for breast cancer patients.

My oncologist was all over the IBC diagnosis. Even when I was in denial. I foolishly decided I didn’t have IBC because there was no clinical proof. Like I can just decide that something is or isn’t so and have the world fall into line. It’s laughable, really. Or maybe just naive.

Amanda Nixon’s doctor had no idea that the eggplant colored breast he was looking at was IBC. Don’t they have a checklist or something???? I mean, really. Anyone with internet access can Google “breast discoloration” and find literally hundreds of thousands of sights referencing Inflammatory Breast Cancer!

My own mother was sent to a surgeon for a lumpectomy but NEVER REFERRED TO AN ONCOLOGIST. At least not until I badgered her and she badgered the surgeon and she finally fired him for dragging his feet on the referral. Gee, it turns out she is BRCA 2 positive just. like. me. Seeing an oncologist changed her entire course of treatment.

WHY isn’t every woman diagnosed with Breast Cancer referred to an oncologist – even if it’s just for an evaluation?

WHY isn’t there an intake “symptom checklist” for Breast Cancer patients that can be fed into a database or something?

WHY, in the age of the internet, is there such a wide range of knowledge, awareness and approach to Inflammatory Breast Cancer? For cripes sake, some doctors are still doing surgery first before chemo!!!!

And why are some of us blessed enough to be here three, four, even ten years later when others don’t last out the year?

Cross posted to Mothers With Cancer

999

That’s how many days I’ve been cancer free. Nine hundred ninety nine days. I’ve had 23,976 minutes – healthy minutes – with my family and friends that I wasn’t sure I’d ever have.

Tomorrow I mark 1,000 days of bonus life. Can I say how much I love that without jinxing it?

I saw Dr. Villa, my oncologist, today for my 999 day checkup. It was my eleventh 3-month appointment over the last two years, 8 months and 25 days. Actually, I forgot I even had an appointment today until I looked at the calendar this morning. I’ve been very busy. But I choose to look at my forgetfulness as a very, very good sign.

It means I’ve been feeling so healthy that there has been no reason for the insidious paranoia that haunts and torments all cancer survivors. It means cancer is not the focus of my life anymore. Is there any better news than that? I wasn’t sure I’d ever see this day.

Is this what it means to be a survivor? Not a date on a calendar. Not five years. Not a countdown from date of diagnosis or surgery or end of treatment? Perhaps, it’s just a feeling, instead. Survivorship. Surviving in body, mind and spirit. A true return to normal.

I hope so, anyway.

Cross-posted to Mothers with Cancer

Ob la di, ob la da

I have not blogging much at all of late. There’s a lot of good in that and a fair amount of bad as well. I’ve been busy as a one-armed paper hanger. Work is backed up. I’m rarely away from my desk. I’m not taking my breaks or walking like I should so my weight is creeping upwards ever so slowly. Of course, all that busy at work makes my days fly by, too. When I get home there is a whole other life that gets crammed into the few hours between 4:00 pm and 8:00 when the kids go to bed. There’s Little League practice twice a week and now games twice a week as well. Therapy for Danny once a week. The ever present laundry and my FaceBook addiction. And filling every spare minute in between is my photography passion.

That’s the good stuff. I’ve been too busy living life to spend much time blogging about it. On the negative side, I’m coming up on my 25,000 mile (2.5 year) check up. As always, I start worrying out of the blue. This time my location of concern is my right hip. It has been hurting for a couple of months now. But the last few weeks it’s become so sore that it wakes me at night and I can barely walk up stairs. So this check up, I get a bonus bone scan!

Tomorrow is my chest/abdomen/pelvic CT. Thursday is my bone scan. Then I have to wait until the 14th (!) before I see my oncologist for the results. I’ll never make it. I haven’t even had the scans yet and I want to call for the results already. Yet, I hope I don’t here from her office before my appointment, know what I mean????

Of course, when everything turns out to be just fine I will have made it two and a half years beyond treatment for Inflammatory Breast Cancer. THAT will be a post in and of itself.

In sadder news, Mothers With Cancer lost another of it’s own this week. Alabama Pink (Manda) of Whoa, Camel! fame has lost her battle with leukemia. She leaves behind a beautiful 3 year old son, Alastair and the love of her life, Adrian. You can read about her passing on Adrian’s blog Rainbows! Puppies! Leukemia. Say a little prayer today for Manda’s family.

Put on a happy face

I have to wonder about myself sometimes. Do I even know myself at all?

I had my three month visit with my oncologist today. This time I actually went in with a well-thought (yet hastily-scrawled) out list of concerns to discuss. But first, the important news… all my blood work was perfect! No indications that there is any cancer on the horizon. Amen!

Rarely do I have lists for my doctors. I usually breeze in all sunshine and smiles making the best of even the worst of situations with a few notable exceptions. I was decidedly unsunny when I arrived at the Emergency Room with a ruptured fallopian tube. Once Daddy-O and Ben got there the whole episode became fairly foggy, but I do have a vague recollection of thrashing around on the table in pain, sure I was about to die and praying out loud for God to save me or at least not take me in front of my son. Or when I bawled my eyes out pregnant with Danny at my regular doctor’s office because I’d had undiagnosed bronchial asthma for months and was so physically stressed from just. not. breathing. that I couldn’t maintain anymore! Otherwise, I might have one off-the-cuff question or two but that’s it.

Today’s list read something like this:

  • Forgetfulness!!! Chemo-brain or old age?
  • Still painful sternum
  • Big bruise on arm since August!
  • Wake up still tired. Low energy? Depression?
  • Daddy-O says I’m a bitch… asks if meds can be increased… please?????

After regailing her with my many and varied tales of forgetful woe, Dr. Villa came to the shocking conclusion that I am doing too much multi-tasking. Put another way, if I put too many balls in the air one is bound to fall every now and then. Plus, I am getting older.

No worries about he painful sternum. I don’t know why I shouldn’t worry. She didn’t say. I didn’t ask. I’m ok with that.

Same thing with the ginormous bruise (which is really a mere shadow of it’s former self) that has been on my arm since August. No worries. Eh.

I worried that I might be having a bit of depression (even though I don’t feel like I’m depressed) as indicated by my waking tired after a full nights sleep, constant low energy, etc. etc. Those are the same symptoms I had the last time I didn’t feel depressed after I had my miscarriage. Turns out I actually was. Huh. Who knew? So I thought I’d ask. But my Dr. V gets the big bucks for a reason. Her first question was if I’d been excercising, which I haven’t. See asthma reference above which is triggered by cold. The virus I got in early December flared up the asthma and it’s been too cold and/or windy for me to get outside and walk until this week. So no excercise for me. Click! 100 watts glaring at me. That accounts for both symptoms. See. I knew I wasn’t depressed.

But apparently, I am a bitch.

I’m finding this harder and harder to deny. Though, in my defense, I do live with three testosterone-ridden humans and suffer with immeasurable provocation. Still, I do sometimes step out of myself in mid-rant and raise an eyebrow at my own hostility. At any rate, she is going to increase the dosage of my Effexor and see if that helps with my break-through hot flashes and these apparent nasty mood swings.

Daddy-O is lucky to have her as an ally.

As well as all that went, I left my appointment feeling less than satisfied.

We normally hug and gush and smile after leisurely minutes of familiar catching up. Today was more formal and doctor / patient like. She looked fairly sober as I left. No hug. No emotional fireworks display for the wonderful bloodwork and continued victory over cancer. I walked out feeling like a burden. *sigh*

Now I can’t help but wonder if I am always so positive and upbeat because that is the way I’ve always been or because I crave approval.

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.