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, October 26, 2010

RCHOP #5 - Angels in White

I realize that I needed to do a post about my #5 treatment,  but it all has been such a challenge lately that I haven't even finished sharing all that i wanted to share about the marathon.  We worked the schedule with Doc Mullally that I could delay #5 treatment because we were flying home on Monday.  On Tuesday I needed to get to Northampton for my blood tests and doctor visit before treatment begins on Wednesday.  I was truly on a high from the marathon and smiling ear to ear as I walked into the blood draw office, where our friend (who I still don't know her name) greeted us in her New England way ( a non-greeting, non smiling, let's get to it greeting).  I can't 'remember now what I said, but I was doing my best to make her smile that afternoon and was successful!  Or at least I got half a grin - which is HUGE here in New England, if you know the type, you know what i am talking about.  I was looking for her name on her lab coat and the only thing embroidered there was the hospital name "Cooley Dickinson Hospital" - so now we call her "Cooley".  She is the best draw in the East!  She never makes a mistake, always "gets" the vein - does a quick draw and we are done!  Gotta love it.  :)

Then off to see Doc Mullally..... he was all smiles as usual and the girls soon showed us to the exam room.  It is such a warm and inviting office with all the photos and the artwork on the walls.  As much as I hate to go to treatment because of the after affect - I really love it there (as far as oncologists offices go - LOL).  I had made him an 8x10 enlargement of me in the Chicago marathon alongside BatGirl (which is now my header of this blog).   I "autographed" it and put the times and date on there too- perfect for framing!  He commented "If that doesn't inspire you - I don't know what will!" as he walked to his office looking for a prominent place to put it.  He had asked us to call from Chicago when I finished so that he would know I was ok.  We text him my results when we were there and he was happy -- (not sure how I could tell that in his text - but I could.  :)) So now in the office we told him the story of the race and how it went - it was so fun to share and he was truly impressed with my performance - AMAZED actually.  He is an athlete (past ski racer, etc.) in his own right  -- dedicated to his fitness and family's fitness and it shows.  His support of me has been there and true.  We have appreciated that more than he knows..... in the office it was like going home to the team and sharing the results to all of them as they huddled around to see the photo and feel my energy.  I still was feeling the endorphins and the excitement of finishing the marathon and sharing the story made it all come back.  : )

The next day was treatment and we are finally in a routine, although when we are running late we miss those RoadHouse Breakfast sandwiches!  ;(  There always seems to be traffic across the bridge as we peek toward the river and wave to our boat at the Sportsman's Marina.  Barely making it there "on time" to sit and wait in the waiting room, Trista greets us with a smile and off we go with all our gear for the day (snacks, books, computers, nano, Ipad, MacBook and my IBM for work too) - finding our favorite chairs right by the nurses station.   
Angels in white above  -- these nurses have been a part of my treatment since the beginning.  They both make me smile.  They are my angels in white - the unsung heroes of the journey of so many cancer patients.  Funny I am wearing white today too and this photo is just real warming to me, knowing how I am on the last "leg" of this marathon! :)

My inspirational tech shirt of the day was my new 2010 Chicago marathon shirt which I LOVE (not only because of the accomplishment it stands for, but because it is Schuyler's birthday too! 10-10) I wore my new track jacket from the marathon too - which I love and thanks to Judy's recommendation I was able to get one of the last ones they had on the rack!  Once all comfy - the nurse came over set me up finding the perfect vein (which they still admire! :)) and the drip of drugs began.  This time was a little different in that the Benedryl HIT ME HARD -- stopped me in mid sentence where I couldn't keep typing.  I then passed out and slept until 1 pm.  Seriously it was crazy -- I vaguely remember the doc floating by and the nurses milling around, and Steve checking on me, but I was OUT.  So much for getting any work done.  I had my nano playing a playlist and it must have just kept me in that trance.  That and maybe I needed the rest?  So needless to say the treatment FLEW by and before I knew it, it was time to go ---

Earlier that week Alison from the National DetermiNation Team had asked me if I would speak on the nationwide Webex for staff at the American Cancer Society as the inspirational speaker.  I let her know I was in treatment and would do my best.  Well -- here it was time for that webex.....  and the room was empty of patients.  I asked Steve if he thought i could do it -- feeling like I had just slept for days..... and still a little fuzzy.... he said sure, if I wanted to I should.  So I called in.  I shared my story.  I shared my Chicago marathon experience and I shared a bit of my DetermiNation experience.  Half asleep, I hoped I was inspiring -- it was crazy though because the IV was still in my arm as I pulled the setup around the room to a small spot and the doc and nurses walked by...  The one thing I remember from that call was Ann McNamara from Illinois chiming in - saying hi -- she has been a friend for such a long time in my career at the Society.  Her strength and care and passion for the mission of the Society shines through every time she speaks.  She said through DetermiNation we (the ACS ) are "changing the way we look at cancer patients" - She is right.  survivors are strong - strong and determined.   Determined to survive, determined to finish and determined to made a difference in the fight against cancer.   I can relate.  Once you are put in the position that your life may be taken away from you by this disease and you get beyond that - you want to fight - you want to show "cancer" and others that it can't take you, can't take your spirit, and can't take your strength.   As hard as "IT"has tried --  --- I am "one touch chick" and "Super Vixen" and "Wonder Woman" and all those other great things that the cards portray sent from people from all over the country. -- My support group is immense.  My "team" of supporters are as strong and dedicated as I could only wish for -- they all want to see this disease eradicated.  The strength of all their prayers is heartfelt and true.

Above my latest self portrait taken right before leaving for Chicago when I was looking strong and still had some color in my face.  I guess it depends on the day.  Lately I have been avoiding the mirror unless I have that silly blonde wig on. :)

Thanks for stopping by -- it has taken me a while to write this as the treatments have been harder and harder to recover from.  It took a 2 full weeks this time! The symptoms get worse, my nausea is looming.  I feel & look sick.  My emotions have been going crazy and I have been pretty down and out and moody.  I am done with being bald - and can't wait for my hair to grow back.  My energy level is low, I am exhausted and need extra sleep, the heartburn is nasty and I don't have much of an appetite because my mouth feels burnt and my throat is a bit sore.  Don't worry - I manage to eat and have not lost any weight. :)  I think finally after 2 weeks I feel almost back to normal (or at least "during treatment" normal).  I can run this week again and that feels great despite the tingling in my hands and feet getting a little worse.  I still need to write about the DetermiNation experience at Chicago -- so stay tuned.  :)  And RCHOP #6 is NEXT WEEK!  My last treatment!  I can't believe it is finally here -- I think I am buying balloons!  :)  Yay!

Please leave a comment - I love to read the comments as they really give me strength & hope.  You are all my support group and cheering squad.  I love and appreciate you all!  :)

Thursday, October 21, 2010

The Marathon Experience - Marathon DAY! (Stage 2)

Here goes - time to finally chronicle the "DAY"....  I had a tough time with recovery from treatment this round and have been so tired and overwhelmed, my updates to you all haven't been there.  There is so much to share and I really wanted to do it right, so I needed to wait until I was feeling better.  Treatment started late because of our travel and therefore recovery was late too.  SO here I am FINALLy ready to report! :)

My Chicago Marathon - 10/10/10

I was happy that we got to bed at a decent time  -- dinner was fabulous and I was like a kid at Christmas, thinking the earlier to bed, the earlier to rise and then I can enjoy my presents!   OK - maybe not the best analogy but definitely anxious for the day to begin.  This marathon created less performance pressure because of my cancer and more focused on the fun and the completion-- so I was smiling and happy - knowing just crossing the finish line for me in Chicago would be an amazing success story in itself.

Palmer House, Chicago, IL (love this artsy shot with the side lighting of the sign) :)

I sent a text to Cara (aka: BatGirl) first thing in the morning to make sure she wasn't going to be late as Charlie had me all worried that she may be, but he kept her right in line with the time frame and they walked from their hotel to ours in the morning.  I couldn't find my glide, but finally did and covered my upper body where I normally get chaffed  - crazy as it sounds, my skin is so sensitive, I really need glide every race. Steve and I hit the lobby Starbucks for some great french roast coffee and I finished a croissant for a little carbo boost for breakfast.  No craziness for food in the morning for me, need to keep it simple so my body doesn't go crazy later!  Plenty of water and then we met Cara & Charlie and family outside the Palmer House.   We were quite the crew.  As I waited for Cara people walked by on the way to the start and commented "nice outfit" -- it was funny because we really look better together as they "Dynamic Duo".  Love the capes!  We decided we could handle the string and wear them the whole way because the look SO good!  My outfit was a little tight, but I really love the look -- so much fun once you get the suit on, I felt like a Super Hero!  Aren't we cute?! The "pirate hat worked (I honestly think having that hat has been a great disguise, so much that people don't even realize I am in chemotherapy.  Or least I don't think they can tell.... :)
We walked to the Elite corrals - Charlie was in Elite A and Cara & I (with David - who we met later) were in Elite B.  We wanted to be sure we were entering right as the time for the start was approaching quickly.   A few more photos as a group and we were on our way.  Steve is just so amazing, he was the tour guide, coordinator for the group to get around on the L and view the course, hoping to catch us with my camera along the course.  His energy and love I count on every minute, every mile.... I love this photo of us together, he is  my incredibly fit, gorgeous husband, and a balanced calming nature -- I love & appreciate him so much.

So we made it to this space and had to wait.  You see the three of us below - well we waited for at least 15 minutes.  I was getting a little nervous, but they finally let us and and it was smooth sailing from there.  People did try to climb the fence and they were immediately booted.  There were 45,000 people on that starting line in the different corrals.... it was pretty crazy!  We headed to the B corral, and said good luck and good bye to Charlie (he was hoping for a sub  3 hour marathon!).  It was truly fun how everyone commented and loved our costumes....  we smiled and waved and posed for photos- even in the start corral, racers pulled out their cameras and asked us if we would flank them for a photo.  SO much fun right from the start.  :)

And here we are after we met up with David PIttman  in Elite Coral B(LINK to his story on Chicago HERE)-- we all ran together in the beginning -- Cara and I chatting along and David just smiling!  
The ACS DetermiNation Dream Team was rocking Chicago!

Miles 1-6:  Feeling fast, energized, excited and pumped by the crowd cheers!  We were "flying" with our capes on and honestly had a hard time running slow.  Truly feeling like a SUPER Hero in cape and costume! (This is usually a problem for me - so honestly I was taking advantage of it - knowing I would pay for it later).  We stopped at every water stop because of the hot weather and looming dehydration and warnings out there because of the heat.  But the water in our system also made it so we had to stop early for that bathroom! :)  
Lucky for us - no line!  In and out quick, but it did slow our pace to stop.

Miles 7-14:  Chatting away, flying high, waving at the crowd and raising our arms to make them cheer louder was so much fun.  My face hurt from smiling so much!  The kids were the best, to see the look in their eyes when they saw the Super Heros running by.  It was so heartwarming to see all the families out there cheering on their runners.  We looked for the ACS DetermiNation folks along the way - found a couple of girls and got my photo taken, but thought I lost Cara!  :)  She of course was waiting patiently for me in a slow jog.  She PROMISED never to leave me -- so cute.  :)  I am glad she didn't.

Photos by Steve Cook --  we didn't see him here - but you can see we were working the crowd. :) 
 This is the award winning photo that I autographed for Doc Mullally
 (Thanks sweetie!)

Miles 16-20:  This was the tough section where it began - we stopped again at the Port a Pottie and my legs were starting to cramp up - either from Prednisone or dehydration or acccumulation of drugs, not sure.... :)  But it wasn't much fun.  It was much easier to keep running.  My fingers and toes were tingly, but didn't feel blistery yet.  It was awesome while in the race when other racers would comment that they loved running near us because we were getting so many cheers and encouragement.  They called me Wonder Woman - and Cara quickly told them my story, how I was a true Wonder Woman STILL in treatment.  Impressed the heck out of them all!  :)  I was starting to lose it with my stamina, so all this talk of strength and admiration of what I was doing kept me going!  

We truly were having so much fun with the spectators and all the suburbs of Chicago -- there was this one section where the band was giving FREE HUGS and we ran right for them!  :)  Then right after that the whole area including a block of water and Gatorade volunteers had a Wonder Woman theme - they were ALL dressed as WW!  This was my section and it was just so cool to be there smiling and psyched to have them there as my WW team!  :)  There was this one transvestite that was dressed in a Wonder Woman outfit down to the boots --- I stopped and said "I love your outfit!" and he said --"I love yours too!"  SO fun!  :)  This one runner actually kept running as he tried numerous times to take our photo - we were the stars of the day!  And anyone who would listen got a quick recap of my story and you could see the amazement  almost look of disbelief on their faces.  Once or twice I took my "pirate cap" off just to prove I was bald.  :)

Cara's BatGirl outfit was a hit!  She was in black so sometimes people didn't notice her beside my red and blue bright outfit.... they called her "Batman, Bat Woman, BatGirl an my all time favorite Bat Chica!" She looked so awesome in the black cape and always had such a huge smile on - people gravitated toward her positiveness.   She checked in with me constantly (or as much as I would let her) to see if I was ok and if I needed anything.   We said a few "Our Fathers" and felt truly blessed and watched over the WHOLE way.  Yes- I thank God for Cara.  We got to know eachother that day - talking the whole way (or at least until I needed more oxygen) - telling eachother our life stories and became the BEST of friends.  :)  The Dream Team for me turned into this dream come true of truly dedicated cancer fighters that have supported me through my diagnosis, treatment and supporting me in my love for running and marathons.  I truly have become to cherish my long distance friendship with each one of them - all of us in our own corner of the country! :)

Here we are at mile 21 (I was "DONE" but couldn't wait to finish)
Cara is in midst of telling a story!  :)  Looking pumped up and ready to finish!  Love her expression in this photo --- she talked the whole way!  Sang a little too!
 At mile 21 we stopped to say hi to Charlie's mom  & sis, get a "WOOT WOOT!" from Mama T - and a HUGE hug from my sweet husband Steve to feel the energy and love our our families !   Steve was so great to snap all these super photos of our adventure!

Off we go!  The Dynamic Duo - making the city safe one mile at a time.  It was pretty funny as this is what we commented to any of the police officers on the side of the course.  It brought a smile to their face as they applauded our efforts.  Cara continued to let them know that I was the real super hero - still in treatment and running strong.....  Her admiration, and confidence in me gave me strength!

Miles 20-26.2: 
Off we go to finish the race.  It has been said that the race begins at mile 20-22.  So as you can imagine with all the adrenaline gone and the body using up its energy that this is a point where you just need to dig deep.  We walked for quite a while it seemed right around mile 22 and drank a TON of water.  Each water stop I poured water over my head and in my face to cool off and add hydration to my body.  Walking was ok, but my legs were cramping up.
Crazy - but we stopped at medical to use a Biofreeze (Bengay type product) to soothe the muscles.  The next stop I went to use another and Cara grabbed an extra.  The medical folks warned us that there was only enough for one per runner.... Cara wasn't too happy with that and let them know I was in chemotherapy and that they really should make an exception.   :)  She ended up using one for herself and gave it to me.  :)  I showed them my bald head - first time exposing it!  They were impressed.   :)

When I stopped for the Port-a-pottie again, my calves cramped big time, so much I needed to stop and stretch.  I grabbed bananas and had paced out my 3 GU along the course for energy and ate oranges that were offered as well, hoping to help the cramping.  Once we got to 24 - I said to Cara... "let's just finish this thing!"  She replied "I can do that- let's go!"  I asked her if we could make the 4 hour goal and she said we could.... so then I just began to dig deep -- it was easier to run than walk, the cramping started to subside at least for the time being.  This is when all the interesting food comes out and there were people with signs that read "Dig Deep - You're Almost There",  "Smile if your Horny" and "They ran out of Beer at the finish" - we smiled as people cheered us on and we saw the same groups more than once (I remember specifically the Frog Umbrella people" and the girls with all their costumes and make up!  ;)  We had fans following us EVERYWHERE on the course.  :)

We ran those last 2 miles without walking - a 10 1/2 and a 9 min/mile --- it felt a lot faster than that.  Best part we crossed the line with a minute or 2 to spare in making that 4 hour goal.  I was elated.  It was overwhelming and tears came to my eyes.  I did it.  I just ran 26.2 miles - in under 4 hours, which is a BQ (Boston qualifier) and I am in the middle of chemotherapy!  Any doubters out there are now hushed.  It was an amazing accomplishment for me - one I will never ever forget.  Spiritually I felt connected and empowered by strength from above.   The skies were shining on me!

We got our medal, got a mylar blanket, and headed to the food / water/ gatorade and finisher photos.  Charlie found us and walked with us through the volunteers and got our free beer (which I of course couldn't drink because it just doesn't taste that great with the drugs in my body).  It was a little tough stepping up on the curbs and walking, but we headed   to see our families at the meeting area.  Once I saw Steve I was relieved and overjoyed.   He hugged me and held me and was so proud.  SO was I.  I was pretty tired, not real talkative, a bit worn out - my feet hurt (maybe a bit blistered) and I was definitely a little fuzzy!  But I was still smiling, so much that my mouth hurt!

The toughest marathon ever?
Yes indeed it was in so many ways both physical and mental.  - and now I can write about it and share my strength and joy with all of you!

Next:  Post Race - "The DetermiNation Experience"

Here is the mileage data is from my Garmin Forerunner 405 
Avg Pace

This truly was an amazing experience - it is hard to really share in words, but I really appreciate all the comments here, the notes, the cards, the letters, and the comments on Facebook.
Thanks for stopping by - please leave a comment!