Touch of Grey

"Every silver lining's got a.... touch of Grey..." - Grateful Dead 

I can't help but sing along.  It is 6am, and I feel on top of the world.  I am on my way to Cleveland Clinic -it's Thursday April 19, 2012.  I have a 8:30 apt. with Susan, the Head Trial RN who has in every possible way become one of my biggest cheerleaders along the way.  

We met less than a month ago when I originally went to Cleveland Clinic as sort of a 3rd opinion on if I should get a hysterectomy.  See it's like this, breast cancer is fed by something... and in some breast cancers it is fed by estrogen.  So, the obvious thing to do (to me) is to get rid of any estrogen in my body, or anything that produces it.  Hence, a hysterectomy.  But, not without the proper research, and Doctor opinions.  My OB/GYN Dr. Miller, (as you might recall me talking about her as my angel... after this post you will certainly not forget that.)  she discussed my case with my oncologist at the James as well as two other Oncologists in Columbus, and when she couldn't clearly make what she called an "informed decision" on how to proceed, she suggested we go to Cleveland Clinic to talk to Dr. Halle Moore and oncologist who might be as I would like to call "our tie breaker" opinion.  And what a change of events that decision has made. 

After meeting with Dr. Moore in mid March many questions were answered.  It was confirmed that I HAD stage 3a breast cancer.  She discussed at length my prognosis and what to do to improve it.  We discussed a plant based diet, no alcohol, and exercise.  And ... cue the music... we discussed a clinic trial they had that I might qualify for... All things to keep this cancer from NEVER returning again.  I was jazzed, excited and think I might have skipped back to the car that day.  I felt so empowered.  It was good to hear there was something else I could do to improve my odds.  It was better to know from another oncologist that I was truly on the right path.  As Ben held my hand that day, he gave me that extra squeeze as if to remind me "we got this."  It was a very good day. 

The one thing Dr. Moore couldn't completely answer that day was should I go ahead with the hysterectomy.  This because my original pathology (from my mastectomy surgery) showed my tumor was inconclusive on if it was estrogen positive.  Riverside's pathology department had classified my tumor as ER positive, PR negative and HER2 negative.  However, OSU's path dept. had me classified as triple negative, meaning I was ER negative, PR negative, and HER2 negative.   I know, I know, what does that all mean?  Trust me, it felt like another language when I was diagnosed.  In a nutshell, these are the tumor markers.  The estrogen and the progesterone are hormones (obviously) and are fed by those.  The HER2 is a marker as well and is another way to help define the tumor and help treat it.  Since these two depts had discussed their findings and basically agreed to disagree, Dr. Moore requested that Cleveland Clinic run the pathology to make a final decision.  My tie breaker... yes, I would like that!    Dr. Moore had thought that the Estrogen marker would most likely come back negative and a hysterectomy would not be a good option.  But she wanted to see the final results before making a decision.  I was fine with that, and waiting is... the name of the game folks... so we waited...

I had some other things to do- like have my reconstructive surgery done-April 3rd, and while waking up from surgery Dr. Moore was leaving me a message regarding my pathology results.  Honestly, I couldn't write this better.. it's just how it happened..sware.   The surgery went well, I came home that day- and it was later in the day when I finally got to ck my voice mail.   I saw the phone number and knew.  It is amazing how easy I memorize hospital phone numbers, for a girl that doesn't like numbers - I sure can do those.  So, I dialed Dr. Moore and got the news.  The news that changed everything.  Dr. Moore said "Brett, I didn't see this coming" no kidding Dr. Moore, I didn't either.  She shared the news that I was ER negative, and PR negative, BUT- I was HER2 positive.   My heart dropped.  I knew what that meant, HER2 positive meant I should have had Herceptin with my chemo, OMG- how could this be happening.  My heart was beating so fast I could barely talk.  I immediately ask Dr. Moore, if I was right... should I have had Herceptin?  Yes, she explained, then she calmly told me of trials and studies that show Herceptin's use w/out chemo after chemo where the benefits are still there.  Hold on, my head is spinning.  Can this really be happening?  We talked more, she recommended Herceptin, via IV, every 3 wks for one year.  I hung up the phone.  Ben was there with me.  I was physically (from the surgery) exhausted, and now mentally unsettled. 

But, it didn't take long for me to see God's hand in all of this.  It was like a deep breath of fresh air.  I can't explain it any better.  I came to terms with the Herceptin, but was still trying to come to terms with how lucky I was to find this.  So blessed.  On a mission to find an answer on something else, we found a very important piece to the puzzle of keeping me here on this earth, and I am so grateful.  I am so lucky.  I know God has his hand on me, and I know I have angels up there working magic.  If you think that is hooky, I understand, but I am telling you from the bottom of my soul I feel now more than ever I have this beat.  I am empowered by this news.  What originally made my heart race, now has it skipping a beat!  So it is my friends, my cancer roller coaster.  May you never get on- but if you do, may you put your hands up and enjoy the ride!  After all, this is life, and I wake up every single day thankful for it.  It may be next Tuesday May 1st when I get my first IV of Herceptin.  The first of a year- long treatment (every three wks for a year).  To save my life.  To help my odds.   I got this. 

I know you are thinking 'how can this happen, how did they miss this?"  It happens, and pathology is both an art and science, just like medicine.  And we still don't know a lot about tumors, and who knows why my tumor did this?  I don't.   I just know it did, and we can do something to insure it doesn't come back.  And I am thankful for that.  I certainly am not looking forward to more treatment, but knowing we found this, is like a fire burning in me giving me so much strength and hope.  My oncologist Dr. Shapiro (OSU) told me I would "breeze right thru this" knowing how well I did with chemo.  I know he is right.  Ben and I agreed this is much too much information for the kids to understand.   So we are down playing it as much as possible.  I will go to OSU every 3 wks, and that's as much as they know.  The most important thing to them is Mom is cancer-free, she is back, she is a silly dancing fool in the morning and she still can't carry a tune!  Davidson (our 8yr old) changed my Wii character to have short hair just this past wk.  It is the new normal.  I feel 100% and they know it.  

"I will get by..  I will survive... We will get by... We will survive..."  -Grateful Dead  plays on my way up to the clinic that Thur morning... I am seriously singing at the top of my lungs... on top of the world.  Driving into the most amazing sunrise in all shades of Pink.   Most fitting.  I  had lots to think about that morning up to Cleveland, and it was all good.   I can't believe the change of events, but I can embrace them.  I knew HOPE that morning driving to Cleveland like I had never known before. It was different.  And I was right.  The next morning (still up at the clinic) I was accepted into the 5 year trial.  My blood tests and chest xray were great.  PS, getting good results from a blood test is like Christmas.  I was given the drugs to take one a day, and was praying for side effects since it was a double bind placebo.  At home Saturday I started the meds.  My side effects are textbook, and I am sure I have the drug and not the placebo.  Again, improving those odds.  I got this....

I will get by.  I will get by.  I will survive.