I am pretty proud of how organized I have been collecting all my records and getting copies of my scans. When we talked to Dr. Mullally on the phone we let him know that we had all the notes from Dr. Barnes & our scans. I think he was impressed. Then when I showed up with my notebook and his copies for our visit, that topped it! :) We were on the right path and were so happy right from the start in his office.
We waited in the room for the doctor --- got my weight & height checked.... same - same (except I think I am shrinking! I swear I was closer to 5'7 when I started!) :)
A little humor right from the start - Dr. Mullally says - "All new patients get the deluxe room, we are moving you...." and we laugh.... I respond - "That's me, always in for an upgrade - " To a nice bright exam room with windows and some nice landscape photography that I of course had to check out.... :)
He comes in introduces himself (the guy stands about 7 feet tall - ok maybe an exaggeration, but he definitely is an athletic tall guy.... ) and we share our info with him...
Then he says...
"Can we not talk about Lymphoma for a while?"
We shared my background, primarily what I like to talk about is my athletics, achievements, my PR's, my ironmans, my marathons, my mountain running championships, my psycho runner attitude.....
Then he asks Steve and he starts talking about coaching, racing and how we missed Mt. Hood ski camp..... turns out that Dr. Mullally is a ski racer and raced with AJ Kitt. He and Steve talked more about skiing, ski racing, skis.... it was really great to have that connection. VERY cool.
Click! Yes this was our doctor. A great match indeed. He understands the athlete psyche and can totally relate to us on many levels.
Then we talked more about me --- what I do -- it started with patrolling at Killington and then the American Red Cross, then the American Cancer Society -- and I shared with him my passion for my "job" - the work I do with the Society, the 15 years of raising funds to fight cancer.... although we weren't supposed to talk about cancer right then..... it is and has been my life. I am so passionate about what I do -- it truly came out when I was talking to him.
So then we talked about my lymphoma, how he has been working with MGH and clinical trials in the Berkshires and then on to what was next, treatment. He made sure we had all the information we needed.... and we came with questions so we got ALL our answers.
We are ready for treatment. Starting Monday. 4 months. 6 cycles of 3 weeks.
Monday - Treatment
Cycles 2,4 and 6 include a visit to Boston MGH
2 repeat PET CT scans to see that the cancer is gone.
I will lose my hair - Steve thinks that is going to be the next hard part. They say within 2 weeks it will be gone, so we need to prepare. Getting a consult from the Pink Petal Boutique and a wig? Hats? Scarves? Wow - just crazy.
I worry a little, more about Schuyler's reaction. I told him this morning the "plan" because he is gone for 2 weeks and I am a little worried that he will be scared when he sees me with no hair. So I need to do this right. He has been so strong and smart and really seems to be handling it well. Here is a fragment of our conversation....
"Mommy is going to lose her hair"
"No! You will be ugly!" he says.....
"No - mommy won't be ugly, it will be ok, I can wear a wig and maybe I can borrow one of your hats?"
"Ok - you can.... "
"Are you worried about me? Please always know you can ask me questions, I know you must be scared, but mommy will be ok, this is a cancer that will be cured, the doctors can kill this cancer and I need all your love"
There is more to come on this too --- he is so amazing and strong and has such a great support system of family and friends too.
So here we go -- tomorrow is the day.... 2 days in the doctors and then the side effects begin. Pretty scary for someone who doesn't even take aspirin and only occasional Tylenol. Just not a drug person.... hate to mask the pain... but for some reason I think this fight needs drugs.
Picture below is our beautiful family on Christmas Day 2009