Writing the Journey

Through Living Beyond Breast Cancer, I am participating in a "Writing the Journey" workshop for Metastatic Breast Cancer Fighters.  Every other week for 12 weeks, we read writings by published breast cancer survivors and then are given a prompt to do our own writing.  

This week is our first 'session', so naturally the writing prompt has to do with initially finding out about having breast cancer.  I think my finding out is much different that most cancer survivors so I thought I'd share it with you.   Without further adieu, here it is in it's first drafted form:

PROMT:

Sharon Bray writes about the life changing moment when the doctor said those terrible words, “It’s cancer.”  Write about that moment from your breast cancer journey.

            I was diagnosed with breast cancer in April of 2007.  My oldest child was 17, and about to graduate high school.  My first chemotherapy, and last period, was on May 15, 2007; two days before I turned 39.

            I wasn’t surprised to learn I had breast cancer.  My story isn’t ‘typical’ because I knew it was coming, I just didn’t know when.  I had participated in 3 Komen 3-Days at that point, raising thousands of dollars and awareness for a disease I knew one day I would have.

            Flashback to 1984:  I was 15, a sophomore in high school and diagnosed with Hodgkin’s Disease.  I was Stage 2B and had 60 radiation treatments; 30 to my neck and chest area and 30 to my abdomen with a 30 day break in between the two rounds.  I missed too many days of school, but was able to be promoted because of my passing grades and a medical waiver that allowed me to miss an unlimited number of schools days due to illness.

            Several years later a trend was developing wherein females who had been exposed to radiation on their chest areas were developing breast cancer.  I was told to start having mammograms beginning at age 30 as opposed to waiting for the recommended age 40.  At 32 I had a mammogram.  I had my next mammogram when I was 38.

            I don’t recall the exact date, but I was adjusting ‘myself’ in my bra and I felt a knot.  It was the size of a walnut.  I kept an eye on it for a couple of months and when it didn’t go away, I went to my local Planned Parenthood for a breast exam.

            I went for the exam and while the doctor couldn’t say whether it was a cancerous tumor or a cyst. He sent me to our local University hospital for a mammogram the following day.  The mammogram showed several suspicious areas in both breast and an ultrasound was performed on the knot. A biopsy was ordered for the tumor, which was now the size of an egg.

            At this point, no one knew that I was visiting doctors and having tests and such.  So, for me, what was traumatically more worse than hearing the words, “You have cancer”, was having to tell my mother that I needed a biopsy.  The only reason I told her was because I wouldn’t be able to pick up my toddler for two days after the biopsy, so I needed her to help me.  If not for that, I would have waited and told her when I received official results.

            I was driving down Rodney Parham in Little Rock when I called her, and choking up I told her that I needed to talk to her and I needed to talk to her right then and could I come over.  I can’t remember if I had my twin sister pick up my youngest child from daycare or watch him, but I do know that he wasn’t present for this heartbreaking discussion.  I am almost certain he wasn’t present.

            I walked in and sat down on the love seat.  My mom was on the couch and my step-dad was in his recliner. I didn’t know of any other way to say it than to just say it.

            “Mom, I found a knot in my breast and I have to have a biopsy.”

            That’s when my vision blurred, tears came out, and the remaining conversation became foggy.

            My mother was devastated.  She too, knew that his day would likely come, but she didn’t know it would be THAT day.

            I had the biopsy and I told my doctor, who was the same one that performed the ultrasound, that I knew it was cancer so he needn’t be afraid to call me with the results.  My mom stayed with me for two days following the out-patient procedure and her presence provided more than physical help, she provided a calming comfort.  Yes, she's a true angel.

            Finally, on April 13, 2007, the phone call came.  The doctor said, “Well, I know this isn’t going to come as a surprise to you, but you have breast cancer.”  My mind was clear and I responded, “Well, what do we do next?”

It's not just the cancer that's a bitch...

it's everything else that goes along with having a double mastectomy at 38 years old.  When I was 38,  I'd birthed two beautiful children and, if I say so myself (and I do), I had some amazing boobs.

NO, NOT THESE BOOBS

NOTE:  This blog is full of TMI...if you can't deal with that, then I suggest you stop reading now and go back to a world where breast cancer is just a cute pink ribbon.  Otherwise, keep reading for a real dose of Breast Cancer Awareness...

Background, very long background:  I had a double mastectomy in November 2007 after 6.5 months of three nasty-ass chemos.  Dr. Suzanne Kilmberg told me that because of the size and location of my initial tumor (10 cms;  going from the nipple all the back to my chest bone, but not actually invading it, thank goodness) that they'd have to remove my nipples.  I was okay with that.  Dr. Yuen, the plastic surgeon, would then put in what are called 'expanders' and I'd go back to him at regular intervals and he'd fill them with a bit of saline so as to stretch out the skin.  Finally,  we'd do an 'exchange' where the expanders would be removed and the breast implants inserted.

So imagine my surprise when, after 8 hours of surgery,  I woke up with nipples!  At this point in my career as a novice breast cancer patient, I didn't question it.  I just figured that there was no cancer actually in the nips and so Klimberg was doing me a favor by allowing me to keep them.

Here's the thing about expanders; they hurt.  Your boobs are rock solid and they hurt.  You're stretching out your skin for goodness sakes.  It's a dull, never-ending pain. And it seems that once the pain subsides, it's time to go back in and get another 100ccs or so of saline injected, starting the dull aching all over.

Let's pause here for some math...100ccs is equal to 3 1/3 ounces.  That's over three shots.  Let me help you picture this:  Imagine these glasses filled with tequila and then putting them in your body...oh, and then imagine drinking one more that's 1/3 of the way full.

Three+ shots...Heisenberg, he's the one who knocks...ouch!

My boobs were so hard during this time that it was obvious by the looks on people's faces when we hugged that they knew something was amiss.  Unconsciously, or maybe consciously, I started doing a little sideways hug.
Like this:

From the mastectomy to the exchange surgery was a 7 month process for me.  Big, round, hard grapefruits on my chest.  Not attractive.  At.  All.

Fast forward to June 2008 and the exchange surgery.  When I was able to get a good look at my boobs after the exchange, I was horrified.  I knew going in, because Dr. Yuen told me so, that I was not getting a 'boob job' but I was having 'reconstruction' and I wasn't to expect movie star quality boobs.  Fine.  I'm ok with that.  For the most part.  If that's what I'd gotten.  But I didn't.  

TMI ALERT:  Pre-reconstruction I had really, really nice boobs, especially for a 38 year old mother of 2.  Yes, it bears repeating because that's how awesome they were.  I shit you not...they were amazing.  My nipples were the perfect size, they pointed straight forward as they should, and they were not too big or too small.  However, admittedly and in all candor, regardless of much I liked my real boobs (but for the fact they tried to kill me), they were not movie star quality.   But I am not ok with is nipples that point directly to armpits.  And I at least expected them to be level...is that too much to ask???

Over time, my boobs became more uneven; they rippled underneath, one is noticeably higher than the other; one had a dent, for lack of a better word, in it; and the nips...well they are pointing further and further towards my armpits.

Also, during this time, I'd been diagnosed as Stage 4 with mets to the liver and bones.  At one point, in 2010 I believe, I was NED (No Evidence of Disease), not to be confused with being in remission or being cured; but I was able to go off chemo and after being off chemo for almost a year, I told Dr. Makhoul, my medical oncologist who I love to this day even though he's no longer my medical oncologist (again for reasons that have nothing to do with my treatment plan, but has more do with his nursing staff who, with the exception of one nurse who had taken a two year leave, are woefully inept) that I wanted to have my boobs re-done.  He told me we could schedule a consult with Dr. Yuen.

Mmmmmm......

By this time, I was getting in control of being my own patient advocate and I told Dr. Makhoul that Dr. Yuen would never touch my body again and that I was going to go see someone else as long as he thought it was okay to go ahead with the procedure.  As always, Dr. Makhoul supported me 100%.  I made an appointment with Dr. Ed Love.

I told Dr. Love that I didn't care what he did so long as he removed my nipples and made me level again.  He thought that was doable and surgery was scheduled.  However, two weeks before my scheduled surgery, the cancer was on the move again and I had to go back on chemo.  And, but for three months after that chemo regimen, I've been on chemo ever since.

As you probably know, being on chemo compromises the immune system which means 'elective' surgery is out of the question.  I was screwed.  Or was I??????  Hell no.

Well, because I am Wonder Woman.

Fast forward to 2013-14 and my boobs look more awful than I ever could have imagined.  Mind you,  reconstructed breasts don't 'give' like natural boobs, at least mine don't, rather, they are pretty stationary.  But now they have migrated so far apart that they are interfering with my golf swing.

That's right guys and gals, go duct tape a grapefruit to the part of your chest and so far over to side where it actually touches your arm and try your golf swing.  I physically have to adjust my left boob before every swing to get it out of the way.  So much for my PGA dreams...shattered...(DISCLAIMER:  I've only actually golfed 18 holes maybe three times in my life, but I do enjoy an annual trip to the driving range.)

What I imagine I could look like playing golf...

What I actually look like playing golf...with sincere apologies to the late, great, Payne Stewart...

You can now (almost) drop a half-dollar coin piece, or at least a quarter, down my cleavage, one breast is about an inch higher than the other (and remember they are stationary, so a bra is not not going to fix that for appearances), and my right nip is all but under my armpit.  Hideous.  No one wants to see that.  Especially me.  Every stinking day.  There's nothing like lopsided, rippled breasts to remind you every fucking day that breast cancer is not a pink ribbon.

If my breasts were a pink ribbon cookie, they'd look like this...in fact, even though they aren't cookies, they sort of look like this!

Just to give you a little visual

But I digress...

So, I am NED again, but am staying on chemo in the hopes of being NED for MANY, MANY more years, I again approached my new oncologist about having surgery to fix the girls.  We decided that I could take a one month chemo break and have the surgery.  So, I made the consult, scheduled the surgery and stopped the chemo.  Again, I told Dr. Love that I wanted one thing...I needed those nipples gone. I was tired of wearing padded bras that I only wore because they hid the monsters we call nips.  I also told him I needed my girls closer together because of the issue with my golf swing.  He agreed we could do all of that.  We also decided that I'd go back to my original size.  TMI ALERT: During my first reconstruction, I'd opted to downsize to C cup.

So here's what happened when I had surgery Monday:  When Dr. Love removed the nipples, there wasn't enough skin left to do the implants.  I'm back to having expanders.  I'm back to going in every few weeks and getting them filled until I can have the exchange surgery.  I'm back to having rock hard boobs.  I'm back to having the nagging pain associated with having my skin stretched.

And I'm ok with that.  Because in the end, I know my boobs will look better than before.  There is no way they can't.  I may not want to show them to anyone else, but I have to see them and that's why I'm doing this.

Carry on.

My Great Aunt Mae

I've had trouble trying to put my thoughts into words.

My Great Aunt Mae died on Saturday, May 10, 2014, and I've not mentioned it publicly until now.  Why?  Because words simply cannot express my emotions, they cannot comfort her family, and because I really don't know what to say.

She wasn't my Great Aunt Mae because she was my grandmother's sister, she was Great because she was filled with nothing but love.  People like her are so very rare.  She always had a twinkle in her eye; she laughed with gusto; and she took care of people without hesitation.

When I was 12, I, along with my brother and sister, was spending the summer in Wyoming with my father.  I forget exactly why, but my father and I had a huge falling out and I refused to speak to him.  I mean, seriously.  I would not utter a word to him. We had two weeks left in our visit and then we would be delivered to my Great Aunt Mae and Uncle Ed's home San Diego, CA, to meet up with my mom and grandparents who were coming in from Mississippi for a vacation.

After a week of my refusal to speak to him, my father relented and took me to my Great Aunt Mae's a week early.  If I recall correctly, I flew there on an air plane and my Great Aunt Mae (GAM) and Uncle Ed (GUE) picked me up from the airport.

What followed was one of the best weeks of my entire life.  EVER.  It was wonderful because I didn't have to share the attention of my GAM and GUE with my brother and sister.  I don't know if my GAM knew how special that alone time was for me,  but it was.

My GAM worked at the mall.  At Sears.  At the CANDY COUNTER!!!! 

She took me to work with her one day and I got to go all over the mall and window shop AND I got to eat candy from her candy counter!  I recall seeing a pair of canvas Nikes.  Lavender.  When my mom and mammaw came into town, I took them to the mall and showed then the shoes.  It was the only souvenir I wanted.  I got them.

Each night during this week with my GAM and GUE, my GAM made me a banana split.  Yes, every night.  Oh, it was my own little slice of heaven.  I was 12 and eating ice cream, no, not just ice cream, I was eating full fledged banana splits (without my brother and sister) every stinking night.

Honestly, that's all I recall of the actual events during my week with my GAM and my GUE.  And that's not really what made it so perfect.

What I really recall is the feeling of being welcomed.  I wasn't made to feel in the way, or as an intruder into their daily lives.  It just seemed like the most normal things for them to be taking in a 12 year old a week early and with all but no notice.

That feeling has stayed with me forever.  The details of how my GAM passed are not important here. What is important is what she left behind.  Of course, she left behind friends and family; a husband, her children, and grandchildren.   But she also left behind a 12 year old girl who was mad at the world until her GAM fixed everything in that moment in that little girl's world.

I hadn't seem my GAM in years.  But I know she loved me and she knows I loved her; and that makes everything a-ok in my world.

Ode to Billy Jack

I remember one night in the 1970's my papaw was watching me, Joey, and Karen while my mamaw and mom went shopping in Columbus, MS.  Someone let us (made the mistake of letting us) watch a Billy Jack movie.  I'm not sure sure which one it was, though I'm pretty sure it was "The Trial of Billy Jack", but I could be wrong.  Anyway, after the movie, the three of us kids were in the den (not to be confused with the living room, which is where the television was located) and we were JuMpInG oFf couches and the chair and just generally being, who else, Billy Jack.


Well, my papaw heard the ruckus and came to check on us.  I have no doubt that he thought we were actually fighting each other even though he strode into the room very calmly.  About the exact same time he walked into to the den, I was flying off the couch through the air with my arms drawn into my chest, one knee brought upwards towards my arms with the other other leg extended parallel to the floor (a-la BILLY JACK!)  most likely towards Karen or Joey, with the other cheering me on.

Like this, but much better, as only a 6 or 7  year old can do.

My papaw was a VERY calm man.   A man of few words.  That meant that when he spoke, you listened.  Well, he spoke that night.  He told us to stop jumping off the furniture and I'm sure he said something about 'acting a fool' and as he was speaking, my jump was over and I was standing back on the couch looking down, humbled, and nodding my assent.  I have no idea what Karen and Joey were doing at that moment.

But what I do know…

...is that as soon as my papaw turned around to leave I looked around, slung my head back and LAUGHED (it's Billy Jack for goodness sakes!!!  Who the hell is going to tell us to stop that???)  and then I took another flying leap off the couch.  Oops.   Papaw caught me in what must have been mid-air, whooped my butt (before Joey and Karen could even cheer!) and made me, and most likely my brother and sister, cry.   I cried!  Not because it hurt, but because MY PAPAW SPANKED ME!!!!  No, he BEAT MY ASS!

Well, that was a first.  A whooping by papaw?  Damn, dude meant business after all. Ouch! (In more ways than one.)  I had no idea that red and black couch was so precious.  My heart was broken.
So much for play-being the greatest fighter for social injustice of my time, AKA the Bad Ass Billy Jack.

Later I learned, that after my mamaw and mom got home from shopping, they asked my papaw how the night was and he replied, "I had to spank Kathy."  I'm almost certain they both shrugged and thought (or said) "Welcome to our world." and went about their business.

Thanks, Tom Laughin (Billy Jack) for bringing back this memory.  I don't look back on it as a sad or bad memory.  I look back on it with triumph and laughter.  Those were the good ole' days.  Jumping off couches wafter watching the man who stood up for this with no voice, BILLY JACK!!!!    Thanks and God Speed.  And no, I don't recall my papaw ever spanking me again, though he probably should have.

God Speed and Rest In Peace, Tom, AKA Billy.