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"!

Tuesday, July 13, 2010

Another Day - another needle... or maybe not....

Starting to think that it would be interesting to document how much time on the phone we have spent with different doctors, nurses, case coordinators and doctor offices in coordinating my care and management of my "case" to get the right diagnosis.   Because of variance in the results of my bone marrow biopsy showing lymphoma in my bones and spine, Dr. Barnes felt the need for possible more tests including a surgical biopsy that would take more tissue to be evaluated.  Dr. Smith agreed and we have been working with Dr. Levheim (PCP) as well to be sure that the insurance is in line to cover all these tests and visits.

We talked to Dr. Len again this morning - which again has grounded us to look at the situation, where we are and what we need to advocate for moving forward.  He again advised us with a lymphoma diagnosis there is so much variety in treatment we really need to be sure that the tests are done and the entire area looked at and reviewed in the PET CT scan and further biopsy tests if needed.

Then we talked to Dr. Barnes -- and found out he has not yet seen (and the Mass General Pathology Department) have not seen the slides yet as they went from Vermont to Cooley Dickinson before they could be sent.  He encouraged us to call Pathology at Cooley to expedite and track it to be sure they get it timely.  We called Cooley - it was sent yesterday - Mass General called us back - they got the slides.  Hopefully Dr. Barnes will be able to evaluate them and give us a definitive plan moving forward by tomorrow and we will be more in line for this diagnosis to be correct and we can start treatment!  :)  So I may or may not have another biopsy done before this is all said and done.  :)


(yes that was a smiley face because I have this lump (s) in my stomach that from the PET scan results shows the spleen at 2x the size it should be.)  :(  AND I really want it GONE.

The other round of calls has been with our health insurance and now we know our case worker and nurse point of contact by name and have direct numbers.  It has been a good morning for that as Joyce and Ann have been helpful and positive.  Policy is policy, pre-authorizations necessary and notes and reasons all needed from docs to get the paperwork done in time for 24-48 hr approval process.  Although with this rapid growing thing inside of me, it is sometimes tough to wait much longer. :(

So back to the original reason I started this post was my thinking about all the needles so far and the future of needles moving forward......


"You have GREAT veins!" --- is the comment I get from all the nurses when they look to put in the IV, the needle for blood tests and although my vein in my hand "rolled" on the first IV -- so far (knock, knock) my veins remain strong!  Good blood running through those strong veins is a GOOD thing!  Strong body - strong mind!  

The other aspect of all these tests is the NEEDLE.  The CT guided biopsy was an interesting experience laying there on the table in the CT scan as the doc had the needle poking in my belly for the sample.  It hurt so much I said "ouch!" -- which those of you who know me know I can handle pain pretty well.  The next BIG needle was the bone marrow biopsy from Dr. Barnes - and Steve, my husband, referred to it as the SPIKE.  My bones were so strong that he really had to push and grind in there with the spike (just my words.... don't worry) to get what he needed for fluid and blood.  It was done right in his office as "routine" and really, honestly  after the numbing he did prior -- I didn't feel a thing!  :)  Eeks.  Well - I was all prepared to be knocked out again today and more surgery for another biopsy - but .... no ....  not today.


And yes - - I am continuing to run - I ran yesterday and will today - more for my sanity I think, but I really want to hit this in the best shape possible.  And if I can continue to run, I don't want to stop now!  : )   Not sure if I will be able to race - at least not until this lump is gone, but as long as I can still run, I will run.  :)

Please keep us in your thoughts and prayers.....   we appreciate all your notes and kind words and encouragement and strength.  It has been tough to keep up on the voice mail, so please comment below!

We thank the Lord for all his guidance and care - as we as make the right choices and advocate for our health for the best chances of a complete cure.

6 comments:

Wix said...

Hey Nancy aka Supergirl, there may be kryptonite out there but cancer ain't it. Do what you always do and kick butt! My thoughts are with you.

Gregg

sonnysunshine said...

I LOVE YOU MY PRETTY FRIEND AND AM PRAYING FOR YOU... YOU ARE THE GIRL I WANT TO BECOME WHEN I GROW UP... STAY SO POSITIVE AND I AGREE WITH YOU.. I WANT THAT OUT OF YOUR BODY NOW... YOU WILL BEAT THIS AND KEEP RUNNING... ALL MY LOVE...

SONNY SUNSHINE... SENDING YOU A POCKET FULL OF SUNSHINE!!!

Heather Goss said...

Lots of prayers headed your way Nancy! You are the definition of strong body-strong mind!!

SayJay75 said...

Just wanted to share something with you that made me think of you...

"Strength does not come from physical capacity. It comes from an indomitable will." ~Mahatma Gandhi

Yes you have the physical capacity...we all see that...but more importantly you the will to survive this..don't ever loose sight of that!!

shelley said...

Nancy, I love that you're "playing all your ACS cards" so to speak! :) So grateful that you are keeping this blog, so we can all follow your progress and keep updated. We are Relaying for you, my friend, and there's no finish line until there's a cure.

Love you!!
The Sprouffskes
Jonathan, Shelley and Thomas "the Wee Ski"

Nancy E said...

Thanks everyone, I love all your notes... Please keep them coming! Gregg, as a true avid Smallville fan, I relate to the cryptonite and yes I will continue to fly!