My journey - battling lymphoma

Recently I celebrated my 46th birthday. I love celebrating birthdays! Then I participated as a co-captain for our local "Quabog" Relay For Life and the Pack 57 Rocks! Cub Scout Team. This was the time frame that I had discovered an uneasiness in my stomach and growth in my spleen and stomach. After weeks of monitoring, my husband Steve took me to the doctor who felt the lumps and ordered a CT scan. The CT scan showed a massive area, my spleen enlarged to twice its size and an additional growth lower in my stomach. Next was the localized CT guided biopsy and subsequent PET scan. The biopsy showed positive for lymphoma and most likely Diffuse Large B-cell Lymphoma.

This is my online journal sharing my experience through battling this cancer that has abruptly entered my life for no apparent reason. The story is documented here if you want to start from the beginning, you can check the archives on the side bar.

As a top competitive master athlete this year winning my age group at the Marine Corps Marathon and placing 3rd in the New England Trail Running Championship I have been truly excited with my results of late and am a truly driven athlete. Driven by goals.... my goal right now.... to beat this "thing"!

Sunday, July 18, 2010


The one thing we have realized in going through this experience is that to be comfortable and matching with your physician can be so important for your psyche and ultimate health.  We were recommended to and got a immediate response for a doctor's visit with Dr. Sean Mullally.  

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?"  

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


Jessica said...

Praying for your strength as the next part of this journey begins! You can do it!

shelley said...

When Jonathan read your post about losing your hair, he said, "...or another way to look at it is being more aerodynamic for running!"

A little like when swimmers shave off everything before an event!!


Nancy E said...

Cute Jonathan... And I also think the weight loss will be great not to have carry so much up the hill... As long as I can balance it with muscle gain. Love you guys and thanks for leaving comments!

Laura said...

Love you Nancy!! I know you will beat this thing... and the positive attitude you have truly inspires me.

let me know if you like this beret - I am more than willing and able to make them - these are so easy and I'd love trying to do the flower decoration too. I just made 2 berets for our show - South Pacific - for the 2 little boys who are sons of the "frenchman". They took less than 10 minutes to make. If you see any sewing patterns for any other "chemo caps" that you like, I'd make them too.

Love you tons!!!