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, August 24, 2010

Methatrexate: Treatment #3

My prescribed treatment is 6 Rounds of RCHOP chemotherapy and every other cycle (2,4,6) is this treatment where I get a treatment of high dose Methatrexate chemotherapy.  Total treatments = 9
To get the proper tests in a timely manner to make crucial clinical decisions the location for my treatment is at Mass Gener‎al for the Methatrexate.  They wanted me to go stay in the hospital overnight, but Steve & I really want to stay with each other all the time so we pushed for outpatient and it was available.  So yesterday and today has been our trip to Boston.  We arrived at 7 AM on Monday, actually an hour early, guess Chad knows we run late!  :)  Armed with all our electronics, computers, Ipads, Ipods, and snacks for 2 long days --- we headed to the room.  LA was our assigned primary nurse.  A very tan vibrant smiley young nurse just back from a vacation in the islands.  :)  It was great to see her bounce around the room with all this energy.  She also is an aerobic instructor!  Makes me smile just thinking about her.  She was so on top of everything and just a joy to talk to -- as you know I love to talk and she listened.... it was great! :)  And she LOVED my veins --- and got the needle with the cute pink color clip in the first time!  She listened to me talk about my running, my crash and more....  :)  She remarked how she can't believe anyone could mess up "sticking" me.  :)  Oh the stories I could tell.....


Quick insert -- the volunteers in their magenta colored coats would come around and check on you periodically.  They were all so sweet and brought food and drinks.  The first man (in his 70's) gave us the intro on the first day and let us know that in a while this 93 year old man volunteer would be by and handing out lollipops, and even if I didn't want one that I really need to listen to his story and have a lollipop.  :)  Well, it was so sweet, this incredibly energetic 93 year old man telling us the story how he had been doing this for more than 20 years, and he found out a long time ago that dry mouth that comes with chemo is best treated with a lollipop.  :)  He was even so nice to pose for a photo.  :)
It was a long day of poison, but don't worry it's safe! --- yes that is what Dr. Barnes said --- we are going to poison you -- keep you hydrated, you hydrate more so the levels are safe for you to leave after the anecdote is given on the second day and you go home!  The drug was a nasty neon yellow.  I was so hydrated from the 2 days of prep and the hospital hydration I had to pee all the time.  AND it was that same nasty neon yellow.
My urine collection was the same color as the drug, so I know it was surely passing through my body.  (Cute eh?)
My inspirational shirt of the day was my Nike Marathon shirt.  I will never forget that marathon --- starting in the dark in San Fransisco, hanging out in the elite tent, and running with more than 20,000 women!  The best part was of course when Steve met me at the finish!  I also wore my Boston marathon jacket from 2010 -- always great to make an impression with a hometown marathon jacket!  :)


 Before lunch, Dr. Barnes stopped in with an intern (a ski racer, so we had a bunch to talk about too) :)  It was great to see and talk to him too.  I love this place.  Well -- wouldn't be here if I didn't have to, but glad I am here because I know I am in the best care possible.  A truly great feeling.  I was a little fuzzy, looking REALLY pale --- but doing ok.  


 I crack myself up sometimes....  When we were leaving and paying at the patient parking window on Fruit Street I go to look for my MGH bracelet for "proof" I am a patient and she says "Don't worry" ---- and I say "OH - the bald head gave it away" --  "I think I am going to start a trend, I think it looks pretty good don't you?"  --- She smiled and looked at Steve "Your husband loves you just the way you are, no matter what!"  We laughed and went to the elevator back to car, funny how the little things make others smile and how smiles are so contagious.  Try to make someone smile today and see how you feel inside.  :)  
But when I left I felt horrible.... like I had been hit by a bus.  Exhausted.  We checked in the Doubletree Bayside in South Boston on the Bay.  Beautiful spot.  I immediately fell asleep when we got back to the hotel. 


 Samantha came to go out to dinner at the Boston Beer Garden.  She is doing so well and it was so great to see her. We went to the Sugar Bowl for dessert and met the owner.  It was so funny, because even as sick as I felt... I started taking photos around and he thought I was from the Globe and going to make him famous.  :)  I took a photo of the group behind the counter.... Steve laughs and says "You collect people"  --- :)  "People love you". 


 It was such a nice compliment to me.  I love him so much.  He amazes me to the point where I often have tears in my eyes.  His love for me is so deep, so real, so true.  I realize that more now, today more than ever.  I AM the luckiest girl in the world.  Thankful for all that my life has to give.  More today - more than ever.


I woke up this morning all swollen -- my eyes, my legs, my feet -- I was 5 pounds heavier than yesterday.  From all that water, hopefully not from the Chicken Pot Pie and Rocky Road ice cream!  :)  Dr. Barnes promised it would go away..... YIKES.  Hated even looking in the mirror, my eyes were almost half shut.  Steve still thinks I am beautiful though.... gotta love that! :)   Steve hates this photo - but it shows just how bad I looked!  We took a walk out to the bay to get some fresh air and I could take some photographs.  It was nice to get outside between the 2 long days.


Day 2 is the Leucovorin the antecdote.  New nurse today -- she is nice, but I didn't see her as much as LA.  At the end she did some "education" so I would know how to handle the side effects and called herself the "Nagging Nurse.    Thinking this is not as scary and complicated as yesterday.  Waiting now for the lab results so we can go home and beat the traffic.  And take a nap in my own bed.  


I love the buttons that Amanda L. sent and had them on my camera bag:  "Chemo Sucks", "Nurses Favorite", "One Tough Chick" and "I love Pain Meds" 

The countdown continues ----  9 treatments total --- 3 treatments down ---- 1/3 of the way there.  Although the beginning of this felt so easy, so normal, now I am beginning to feel drained.  Feeling the "chemo brain" - forgetting things, and just not able to focus like I could before.  Need more sleep and I will try to keep hydrate.
My inspirational attire -- had to wear my 2008 Boston Marathon coat.  When in Boston - wear Boston.  Ask any fan.... Red Sox, Patriots, or Celtics!  :)  Boston is a very proud city.  Full of history, full of life.

Here comes the Nagging Nurse!  "The star patient has now gotten the go ahead" and we are out of here!  
And just to show --- again --- that I always look better with my "twin" -- my perfect match.... my love, and number one fan...

On facebook I was FULL of quotes today ---- they truly helped me through the day --- enjoy! 


"ABILITY is what you are capable of doing. MOTIVATION determines what you do. ATTITUDE determines how you will do it." - Lou Holtz










"We would never learn to be patient or brave if there was only joy in the world." - Helen Keller


"Surround yourself only with those that make you smile. Life is too precious to surround yourself with any negativity of any kind"  - Nancy Cook

6 comments:

Laurie said...

You go girl. Have a great nap!

Karen said...

I love reading how "chipper" you sound, even from a treatment room! You embody that ATTITUDE quote for sure... I think about you all the time and am continuing to send you strength and love from your extended ACS family in Jersey!

Jess said...

Your positive attitude is such an inspiration! I am so glad there were others bringing you smiles so that you could laugh your way through this portion of the treatment.

Susan said...

Is that Dr Jeff Barnes? Likely the resident who was treating Bill along with Dr Ephraim Hochberg his oncologist! What a great team! His protocol was very similar. Praying for you! You have a GREAT ATTITUDE!

Sasha said...

I love the love that you two have for each other....I can see it when you two are together..in all of these pictures..and the way he protectivly wraps his arms around you ( I see that in a lot of pics of the two of you). You guys are amazing and make a great team...you and your "twin"! Hugs to you and hope to see you again soon...wouldn't mind another day trip this fall to Northampton!

Joyce Pemberton said...

Oh Nancy...I tried so hard NOT to cry but here I sit with tears running down my face...NOT because I feel bad for you but because I am so proud of you!!! Your spirit, humor, and ability to acknowledge what and who are and what you see around you amidst what you are going through. You tell Steve that i know what he is going through and he is the ROCK that you rest upon. It's a huge burden - sorry- but there is nothing else he could do or be at this point. As I was HONORED to be a caregiver, I know he feels the same. I'm reading this and laughing and crying all at the same time. You are so loved sweet girl.