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"!

Friday, March 11, 2011

I am here.

I got the call.
Dr. Barnes called on Tuesday & gave us the good news and there is NO cancer in my spleen.  It was the best news we had heard all year.  It took them a whole week to slice and dice the thing, but it turned up negative.  Even better news is that it will be a close follow up of CAT scans & blood work for 2 years.  I feel like I have hit another milestone in this journey.  Survivorship.

I am here.

This latest experience has me reflecting on my past - working with the American Cancer Society - and the amazing volunteers that were "cancer survivors" to now truly discovering what it means to be a "survivor".  

I remember specifically in my early years working as an Area Director for 5 counties in the state of New Hampshire.  I called it the "West".  :)  5 powerful small counties with so much potential.  I replaced this staffer (I think her name was Kate) that the volunteers held in high regard and respect.  They were tough shoes to fill.  So there I was in my early 20's... working with professional volunteers to support the mission of the American Cancer Society.  It was the Gail As & the Bob M's  & the sweet Suki's that I "cut my teeth" on to develop my skills in working with volunteers to support the mission of the ACS and it is those early experiences working in the "field" that I remember the most .

Gail A. was a strong woman in the Peterborough area.  I remember her not wanting to be called a "survivor" because it was truly something personal to her.  She didn't want to be "jinxed" by the label.  I can see how she feels now that I have had cancer.  It is a beast.  Fast forward to the Chicago Marathon - Kristin McQueen, cancer survivor & marathoner & IRONWOMAN says it best - "Suck it cancer!"  She tapes those words on the back of her race shirt where ever she goes (raising more than $10K each year for ACS DetermiNation)..... It's true - it may be chasing you your whole life.  Now that I have had cancer I realize there is nothing that ever says you are done.   So many I have known have been "hit hard" multiple times.   Mary Beth Redell from American Airlines - who we lost this past year to her final battle with colon cancer - is an amazing strong example.  Others like sweet Suki from Peterborough would be the volunteers that lead that tiny town into making tens of thousands of dollars at Making Strides Against Breast Cancer.  Her passion along with the passion of Betty Borry I got to know as the staff person at the Breast Cancer Survivor Adventure Weekend back in the mid 90's- where myself and cancer survivors (all ages and all stages) were given the opportunity to get away for the weekend and work through a ropes course, writing, kayaking and reflecting.  It was an amazing experience for me I will never forget. Hearing about what it meant for each of those women to be surviving cancer face to face in that setting was one of the most inspiring things I have done in my life.  

 I remember in July when I was first diagnosed.  I was scared, but decided to look the beast in the eye.  I laughed as I told my friend Judy I couldn't wait to wear that purple tshirt, the sash and walk that lap!  Being a survivor is a celebration.  A celebration of life.  My life, the lives of others who have faced the beast and lived another day.  More birthdays - for more survivors - a mission you can relate to especially if you are someone like me who just loves their birthday!  But this second time that I thought it could be more cancer, that scared me - I couldn't write about it. I had had enough.  I had finished my chemo treatments, I fought hard, lost my hair, eyelashes & eyebrows, felt like crap, exhausted & beat up.  My hair was just barely starting to come back so I didn't have to wear that crazy blonde wig.  I kept my positive outlook, kept running to stay strong (mentally & physically)... to now hear this news of "Sorry we 'saw something' in your PET scan".  EEK.  Spleen removal?  Major surgery?  Whatever it takes is all that I could think or say.  We had the best docs taking care of me and we put all our trust in them.  Now, with the results in hand - no cancer - it is time to go back to living a normal life - wow - but I will never be "normal" after this experience.  

I am here. 

This was on the back of the Relay For Life Tshirt in Boulder Colorado when I moved out west (the REAL west).  :)  Kristin Sheldon was an artist I met on Pearl Street.  On the weekends it was always a fair, vendors with their "carts" - and I loved her cards!  I introduced myself to her that day and by chance it was the 1 year anniversary of a dear friend of hers that she lost to breast cancer.  A true calling - me asking her to design a card & a bookmark to give to luminaria donors and the words in her font on the back of the survivor tshirt.  The words meant so much to me at that time, but mean so much more to me now.  I am here - PERIOD.  I am here to do what it takes to share, to inspire, to encourage and to care about making a difference - a REAL difference.  I don't quite yet know what that means yet.  But I know there is more to come for me.  I am alive due to the research and where we are with cancer treatments right now, because of amazing organizations like the American Cancer Society.  I am here to do what it takes.

There are so many cancer survivors - so many stories of strength.  I want to share my story to give others strength, but it isn't really about my story, I want to hear everyone else's story, it is a collection of all of the stories out there - because in every story there is inspiration, hope and a celebration of a life.

Be strong.  Stay strong.  Celebrate every day, because each day is a blessing.    

 I would like to share this card that Kristin developed for us at the American Cancer Society. 
"With a trail of light, there is no night" 

We celebrate the lives of the cancer survivors by honoring them at the Relay For Life luminaria ceremonies and paying tribute to the memories of those we have lost to cancer - "the beast"....  we light a trail of luminaries to celebrate those lives.  Remember at your Relay this year to celebrate those you love, those you care about and those in your community that bring strength to our world.  

I am truly blessed to have such an amazing support system.... my family, my friends, my colleagues at the American Cancer Society - my doctors, Dr. Sean Mullally and Dr. Jeffery Barnes.  ALL of the nurses and people that have smiled when I needed a smile, prayed when I needed strength & sent their love when I needed a boost!  

Thanks for reading, stopping by - please leave a comment - I love to hear from everyone. 

Tuesday, March 8, 2011

Bye bye Spleen! RIP!

If you don't need it - get rid of it!  If there may be cancer in there - just take it!

The weekend before the "knife" was a lot of fun at Mount Snow skiing with my "girls" for the last time this season and then out on the hill until last chair with Steve after skiing with the group.  The skiing has been so amazing this winter!  We have enjoyed every moment possible on the hill....  The Stratton race was the next day, we drove home knowing it would be more comfortable sleeping in our own bed before heading out in the morning.  Schuyler stayed with the Feliciano's, who truly have become such great friends of ours this season.  Sunday, Schuyler raced, Steve coached and I took photos of all the racers...  I love the energy of the kids on the course and so proud of Schuyler & his friends as they ski by... my photography has been such a great focus for me during my "cancer" and I feel I have taken it to a new level.  It is always great to focus on something you are passionate about when shit is hitting the fan.  :)  Just kidding.  But just like my marathons, I have been spending time training, or sorting through thousands of ski photos to take my mind off what "may be".  I have such an incredible support system on the mountain... all the parents in the ski club, all the coaches at Devo & Comp and of course my incredible family.

After the Stratton race we were headed straight home after a little Schuyler search to find him at the ceremony....  Once home we got Schuyler ready to spend the next few nights with our amazing friends/neighbors the Courchesne's.

Our trip to Boston in the morning on the Pike for almost 2 hours put us at the Wang Building of Mass General a few minutes late, we signed in and within 15 minutes "Nancy Cook" was called to the changing area.  I felt like I was in the army with these big plastic bags for my clothes and shoes.  I gave all my "valuables" to Steve - changed in the room and joined him back in the waiting room with my johnny & robe.  Pretty funny when everyone else was in street clothes.... even for that moment, just a bizarre feeling. They called my name again and I was brought to a gurney / spot in the waiting area - met the first of what seemed like 1000 nurses of the day.   This nurse took my vitals and initial bloodwork (they always seem to remark how low my vitals are - 110/50 BP & 50 pulse - all that running is good for a reaction I guess! ;)  She and many of the others seemed to be reading my file of how I ran the Chicago marathon while in treatment and just looked at me in disbelief and in awe at the same time.  I sort of felt like a "star". Steve was finally able to join me for a few minutes (it seemed like only a moment) and they whisked me away down the hall.  Pretty funny how all the orderlies know each other as you move around this HUGE hospital - they smile and are just so sweet.  

They found me a spot in the hall - and the anesthesiologist, a short woman with a huge smile and friendly manner began my "interview" - She promised they weren't going to do the surgery in the hall and showed me the room.  I then met a few more nurses and "team" that would be taking care of me.  Mass General is a teaching hospital and there are many people that again were reading my chart and making me smile with their comments about my running.  :)  (I like that).  :)   My surgery was scheduled for 7:45 am and we were on time.

Funny part is that is all I remember now that I am writing this.... I remember seeing Dr. Yoon wandering in the hall and he shook my hand, said hi and .... well it seems to be a blur.  The drugs were real good because honestly I don't remember anything until I woke up and saw Steve there with me in the recovery area.  I remember that we didn't get to a room until around 5ish that day.  Long day!  I remember my friend Robin Popp came to visit :)  It was great to see her, but I felt so out of it.  Steve was so patient, I guess he just had a long wait for me the entire day.  They said the surgery was a complete success, the initial findings did not indicate any cancer, but the spleen is so big it would take days to biopsy it.  

Finally in the room I was regaining my sense, although in quite a bit of pain from the surgery.  They had tried different pain killers, some that made me nauseous.... my throat was really sore and it was just exhausting.  Steve had his computer out and was right there by my side.  Such a lucky girl.

The lady next to me had her husband or friend there and it was around 9 pm that they wanted to kick them out because of visiting hours.  We had hoped that we could talk them in to letting Steve stay because I was so nervous and anxious, but I didn't have the energy to fight with the nurses.  :(  So he made the trip home that night.  I slept a little, only to be awaken it seemed every couple hours because my roomie and I were on separate times for vitals.  Steve came back first thing in the morning and the plan was to get me home that day...  I desperately wanted to be home in my own bed and getting some sleep so I could heel. :)

Dr. Barnes stopped for a visit during the day - remarked that I looked great, the surgery went well and again no initial signs of cancer.  They had biopsied one "slice" - but needed until Friday or Monday for the results.  To have my spleen removed was the least invasive of all the options.... I just prayed that we would not find more cancer.  Dr. Yoon stopped by too.  He was happy with the surgery results, meaning no complications.  He was a little wary about me going home so soon, but knew that was my goal and made it clear that I had to have enough strength but it was possible.

The last of the 1000 nurses and "team" working on my care was Kristin (sp) and she was awesome.  The goal was to get the catheter out and to be able to walk to the bathroom and back.   Give me a goal - I am there!  She found me sitting up on the window cil ready to go - and she checked me out.  It was 3 pm and we were bound to beat the Pike traffic that afternoon.  

The ride home was really tough.  Bumps were awful and I braced myself for the potholes on the side roads after getting off the Pike.  It was pretty painful.  Once home I could rest.   Recovery this week has been slower than I really wanted it to be, up until yesterday the bumps were just excruciating to my stomach.  Schuyler went to the mountain but we stayed home where Steve did some major driveway repair from the rain, mud and flooding.  

I am so blessed and thankful for all my family and friends.  Flowers, chocolate, cards, books and the coolest of packages to cheer me up have been flowing to the house.  Thank you all so much!