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"!

Monday, August 23, 2010

Super Heroes

"The heroes in your life are those that get you through the tough times, your family, your friends. And as a cancer patient, you learn that your doctors & nurses are the super heroes that put it in high gear when you need them the most."   - Nancy Cook on cancer survivorship
It isn't easy being "sick" --- I hate being "less than perfect" period....  I will do whatever I can do to heal myself from within, listen to my body, figure it out and get better.  I hate even taking aspirin or advil or tylenol.   I believe the power of your mind and your faith will help you heal. Before all this I went to the doctor for my ACL knee surgery, and for all my check ups, routine mamograms, PAPs and annual visits, as well as anything that would just not "go away" -- like a bad case of poison ivy or excema.   Having cancer means getting used to going to the doctor.  It means if something is "off" and the symptoms become more than tolerable you need to call.  I am really not too good at that part, and will push the limit.  These last week I was not doing well, fevers, chills, aches, nausea, heartburn and really tired to the point where I couldn't focus.  All the worst symptoms at the same time.  We found out this week that people in chemo have died from low grade fever one week out and decided that we won't ever push that limit again...

And on top of all that - my mouth is BURNT where I can't taste anything, therefore eating is difficult and my energy is low.  I hate writing about the bad stuff, so of course all you hear on this blog is whatever I can do to pull myself up and out of it.  Steve stayed home again this past a couple days to be at my side.  I have been so tired and weak at times that I haven't had the energy to write and trying to keep in a positive mindset fighting the latest challenge with the insurance at the same time going through the aftermath of RCHOP #2.

I titled this post "Super Heros" for my docs --- feeling so incredibly blessed to have the best in charge of my care.  It was a rocky road in the beginning -- but once all was on course we had connected with these amazing doctors.  So here are some recent experiences to describe my "Super Hero" Docs -----

Dr.  Sean Mullally - my oncologist (Cooley Dickinson). 
He is my advocate that came a little late into my care, but this man has he been a shining star. I look forward to talking to him with Steve at his office, during treatment and when he returns my calls.  He always asks me about my athletics and life in a way that shows he really cares. His positive outlook and encouragement has been unwavering.  Working through the insurance issues of going to MGH for treatment was our latest hurdle and he has spent many hours on the phone to the insurance company, the insurance company physician and with Dr. Barnes to coordinate the referrals.  We were denied, but then approved at the last minute, but only for one of the 3 treatments.  He continues to work his contacts for all the options and we are still hoping for our  original plan and best case (and only case) scenario to go back to MGH.  There was one point where it was mentioned that I may need to change my care to another doctor and it really had me worried.  I don't want to change.  Make that happen.  I am so happy where I am and it hasn't been easy getting to that point.  Please whatever it takes - keep me in your care.  He was happy to hear that and said thank you to me.  "You are worth it" are words that he has said in the past and it really shows in his care.  We (Steve & I) have clicked so well with him and couldn't have asked for more.

Dr. Jeffrey Barnes - Oncology lymphoma specialist (MGH)
We had the sincere pleasure of seeing Dr. Barnes again this past Friday as a pre-visit to the high dose Methatrexate that I am getting at MGH.  As much as the trip is a trek across the state of Mass, it was actually really great to see him and get all of our questions answered.  He answers them without you even asking.  :)  That is how good he is. :)  A walking cancer encyclopedia --- just FULL of facts and figures and stories and history and MORE!  Steve & him click in that department (for some reason - not sure if it is the stress of knowing it is me dealing with cancer that gets me all fuzzy.... and I can't focus as well) -- Steve takes notes and asks questions --- it is always quite informative.  :)  So they are poisoning me and giving me the anecdote  - "Don't worry -- it's safe!"  :)  But that was all I heard.  That and I need to drink 4-6 L of water a day through the weekend, to the point where I will be cursing him because I have to pee all the time.  Such humor from such a smart man.  :)  He has this great smile and jumps on your questions to answer them plus more.   I feel confident, safe and secure in his hands and recommendations.  Although he sort of advised me not to run Mt. Toby this weekend.  He said I needed to drink so much water that it would be inhibited.  I looked for another race on Saturday to replace it and couldn't find anything.  I had it in my plan (which I have a hard time deterring from) and did it anyway.  He smiled today when he walked in the room (Steve said he probably figured I would run anyway) and saw my black and blues and scratched up arm.  He appreciates my dedication and drive - I can tell.  :)

My positive experiences from the beginning with all the doctors that have helped me along this journey have truly been amazing....
 - Trish - the front office at Dr. Levheim's office worked so hard on my case, making calls, putting through referrals and appointments and following up on everything - She is amazing!
 - Dr. Levheim -- always making herself available and following through on all that we need to get this done!
 - Dr. Marvelli - the surgeon we saw in case we needed a CAT scan fit us in at a moment's notice twice and we never did need to use his services.  He checked up on the CT guided CAT and was really so great to be an advocate right from the beginning when I was still so scared of this situation.
- Dr. Hartnell -- just makes me smile!
 - Dr. Ed Mullen -- put my mind at ease and talked to us for more than 1/2 hour when I really didn't know if I was going to live or die.
 - Dr. Len -- made himself available for conference call, education, and really helped us advocate for my care.

All these doctors have been sent to us from above and we so very blessed. 

On the boat with my #1 hero & caregiver - my husband and true love - Steve  

Thank you for stopping by - please leave a comment -- 
I love to hear from everyone and read every note.  


Love Letters To China said...

Nancy, I'm so sorry to hear your haven't been feeling well. After reading your post, I can tell you definitely have an awesome group of physician's working on your behalf. It really sucks that you have to deal with all the insurance BS that goes along with being sick. I'm always wondering why we pay so much for it, but when it's time to get the care we need, there are hurdles that need to be jumped. My hubby sounds like he has a very similar personality as yours. It's wonderful having someone like that on your side. Stay strong.... my thoughts and prayers are being sent your way.


Ashley Sisk said...

Well I don't know how all these superheros fit in a room together because you are the biggest superhero I know. You inspire me!