Wednesday, April 25, 2012

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. 

Saturday, February 4, 2012

WE did it!

"Dear God, Thank you for helping my mom get through Cancer, and please let her never get it again. Amen"  This was our 8 yr. old's prayer last night at bedtime.  He said it while holding my head in his little hands while our foreheads touched.  But the best part... after I said Amen, he looked me right in the eyes and said.  "I know those are happy tears mom!"  He was right.  I love that he knows this, I also love that I no longer have to hide behind my feelings because he sees right through that anyway.  Kids see much more than we ever realize.  And there love and support is stronger than we could ever imagine.  God's gift I am sure.  They seem to know the right words at the right times.  Simply put.  No extras, nothing flashy, just simple.  Good.  and right on.  That's how they roll.  So much to be learned there.  And my saving grace for the last year. 

I had my last treatment today.  Love that sentence.  I did it.  I made it.  But really it should be WE did it, WE made it.  This was not a journey I took alone.  Sure, I was the only one who got the surgery, the port, the chemo, and the radiation.  It is such an overused joke now, but still makes me laugh when Ben says after one of these procedures... "That didn't hurt me a bit!" :)  I still humor him with a smile.  But the truth is it does, and it did hurt him.  And he stayed strong.   Everyone around me stayed strong.  But even stronger than strong.  I hear everyday how amazing I am.  How brave.  How strong.  It makes me cry, I don't mean a little I mean waterfalls.  I am a weepy mess friends.  Because what you see is only a mere reflection of everyone around me.  I am only as strong as you.   I couldn't have done any of this without you.  Sounds like a cliche doesn't it.  A bit cheesy I am sure.  But the truth.   As I sat thru my last and FINAL radiation today I thought about all my support.  I thought about the simple smiles of the nurses and techs at the James.  I thought about the many laughs we had over the song choices while I was getting my daily dose of radiation.  They sometimes had to screen the country songs.. so many country singers want you to "Live like you are dying" or "Love you through it" ... of course not the easy song to hear while you are holding your breath with your hands above your head and truly only thinking about your cancer, hoping you never have to go thru the past year again, and so on....  
I thought about the day in June when I drove through Granville for my surgery.  I cried remembering the sign at the end of our street that said "It takes a Village to CURE CANCER".   It kept ringing in my brain.  If I didn't have strength that morning... I certainly found strength from those signs., and balloons.  I still do.
I thought about the meal trains, and the amazing amount of people that came together to insure my family was feed, and feed well.  The amount of LOVE that went into every single meal made for us.  I thought about the families that had prayed together for us, and that continue to pray.  How can that not make me strong, brave.  I thought about my girlfriends in the lobby of the James waiting for me to come out one last time and RING the bell that I was done with treatment.  My support team.  I thought about each one of them.  And the ones that were there in spirit.  My neighbors who mowed our lawn, watered our plants, watched our kids... while I recovered from surgery and chemo.  My friend who single handily organized playdates with our kids so every single day in the summer they were cared and loved --- Are you feeling strong yet... b/c even writing this makes me feel it... INSPIRED... BRAVE... these are all words you call me, but don't you see... you made me this way... YOU all made me this way.  I think of my family, and the enormous amount of strength they gave to me this entire journey.  My parents, my brother, my in-laws,... cousins...aunts, ...I have a cousin who sent me a card in the mail once a wk while in treatment.  AMAZING.  I think of my friends from college who visited, lifted me up, and kept reminding me who I was... who I truly was.  I think of my husband who is my true hero in all of his.  He got to see my at my worst, I mean we are talking physically and mentally.  And it wasn't pretty.  And you talk about BRAVE and INSPIRING, and STRONG.  He is this and more.  So, here I sit at 4am... unable to sleep because I am still pinching myself that OUR happy ending has arrived... I am absolutely humbled by this experience.  It has without a doubt been a journey.  One we took together.  One I took with all of you.  Each day was conquered with the help of each one of you.  I love the silver lining of it all.  I love the fact we did it.  I love that each of you were here to make me strong.  I love that God held me in the palm of his hands throughout this.  We are blessed.