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"!

Wednesday, September 29, 2010

Applefest Half Marathon - a TRUE Challenge

Hollis, NH
September 25, 2010  -- 10 am start
This was my third time competing in this half marathon in 3 years.  My friends had always told me what a great half this was to run and I love the foliage time of year to be running long training for a marathon.  Fitting this in has been perfect in my training schedule in the past.  They reward the top finishers with a free entry to the race and I have been fortunate to have my entry waived 2 years in a row.  The race director is awesome, the awards are fruit baskets (of fresh local fruit) and home made apple pies. The post race "meal of apple crisp and great food galore is a grand treat at the finish line! It is truly a fest of Apples!   I registered early and the field closes out about a month out from the race, so only serious runnners are there in force.  It has a 2 person relay component to it so there are close to 1500 runners that start.  


Saturday was a warm day --- temps were in the 80's and the sun was shining bright.  We were a bit late leaving the house and pushed our trip to be running late overall.  It was a bit stressful, because you have to ride the shuttle bus from the middle of town - it took a little extra just to get to the school.  I showed up at 9:50 to get my number and race to the front of the start and meet Steve who had my camera.  I love all his photos and shared my faves below.  

Runners - ready - set - go!  And the gun went off and we were running down the hill to town... I was smiling for Steve and pushing my pace right from the beginning.... untill I felt sick... my legs were heavy... my stomach not so great either....  I couldn't get my breathing and my pace ....  I felt horrible...  I kept going, but thoughts in my head like I really shouldn't be here, this is crazy, I can't do this, kept going round and round in my head.  I kept going thinking I would know when to quit.  I felt like quitting, but I could still do it.  I saw Steve at mile 2 and was beat.  I didn't know if I could keep going for the whole 13.1 -- I was a little freaked out.  But I kept going, giving myself a break.  SO used to seeing the pace on my Garmin read low 7's for a race that it was really hard to let myself go slow - take a break.  JUST FINISH.  You can hang out and be in the back, you don't have to be in the front  -- I kept telling myself.  And then I did just that - I relaxed and gave myself permission to run slow.  I paced about 8's on the flats, 9's otherwise and once in a while I hit a 10 minute mile on the hills.  I talked to some people along the course and cheered them on.  There were a few that helped me relax and breathe too.  People are so nice in races --- at least where I was on Saturday!  :)   Steve came out to the 6 mile mark (probably thought I needed a ride) - and asked if I was ok.  He caught me on a downhill, so I was fine!  Gave him a quick kiss and kept on going...  It was crazy hot for a long race, finishing around noon was not so much fun...  I saw Steve again with less than 3 miles to go and was thinking, "do you think anyone knows I have cancer?  How hard this is for me?  That is am in the middle of this craziness in my life?"  We all run our own race, in our own arena -- rarely do you connect with others at these races.  But boy I wish I could have yelled my story from the roof tops -- what I had accomplished as I hit the last climb to the finish line.  Yay --- I did it.   I was ready for my speech!

In perspective, my time was about 20 minutes slower than last year - I was third woman in last year's race.  This year I was 10th in my age group and in my mind a much bigger champion than ever! An 8:46 to me was LIGHTING fast - especially during "treatment week".  See the full results below. 

The doc is right.  This chemo stuff is accumulative and the longer I am in treatment the more tired I am going to be.  It seems every appointment he asks me if i am still running and I say yes (like there is no other option for me) - It keeps me sane, gives me spirit and I feel alive.  I have this goal to do the Chicago marathon and I will finish.  But honestly when that is done - I am taking a break!  :)  



169 of 889 finishers - Top 20%!
10 out of 48 in age group:   F4549 
Overall time: 1:54:44   8:46 min/mile
Nancy Cook             46 F  1256 Belchertown MA  

FEMALE AGE GROUP:  45 to 49
Place O'All Time     Name                     Age Sex Race# Hometown                
===== ===== =======  ======================== === === ===== ======================= 
    1    52 1:41:13  Karen McAdam              48 F    1105 Hudson NH               
    2    87 1:44:58  Rebecca Arsenault         47 F     893 Hudson MA               
    3   107 1:46:35  Diane Fowler              47 F      71 Andover NH              
    4   109 1:47:16  Barbara Drislane          45 F    1059 Salem NH                
    5   156 1:51:50  Lauren Barakauskas        46 F     417 Cambridge MA            
    6   158 1:52:05  Pam Triest-Hallahan       49 F     406 Nashua NH               
    7   165 1:52:37  Maggie Ramos              49 F     826 Peterborough NH         
    8   169 1:53:01  Kirsten Vernon            46 F     815 Amherst NH              
    9   182 1:53:43  Julie Kopser              45 F     535 Hollis NH               
   10   195 1:54:44  Nancy Cook                46 F    1256 Belchertown MA  

"Just Breathe"

"Not sure who is crazier --- this guy or me?!"

"Less than 3 miles to go at this point --- do you think anyone really knows how tough this is for me?   I took off my cap to share my "beautiful baldness"!  But boy does that head need a tan!"  :)

Headed up the last hill to the finish line -- I love this photo -- I am so happy - so proud that I finished!  It was incredible, a tough course, a hot day and I finished even though I am currently in treatment for lymphoma and only 1/2 way through chemotherapy.  

My sweetheart, my caregiver, my number one fan (and the best Nancy photographer out there!)  At the finish!  Everything I do - I do with his support and love.  I am truly blessed.

THE Finisher Medal - this medal means so much to me..... I have run only one other race (Mt. Toby) while in chemo.  Now only 2 weeks till Chicago -- it has been truly a HUGE challenge for me!  My running really helps me to keep my spirit, my sanity, my drive, and my mental state in tact.  I am so happy I am in as good shape as I am to be able to sustain my training and continue to pull out these races - despite it all.

Thanks for stopping by --- please leave a comment - I truly appreciate all your support!  
Cheer me on at the  Chicago Marathon!  
10/10/10
10 days and counting! 



RCHOP #4 - Making some "head" way!

Officially we are more than half way there and making "head" way!  Funny reference to the head.  I thought I would get used to the look, and well I guess I have in my own way been proud of how strong I have been, but it is wearing on me....

  I keep the end goal in mind, and think early November the treatments will be all completed! Yay!  It is hard to share what this is really like, but I am doing my best to update this blog and keep writing about my experiences.  When I don't feel well I really don't feel like talking about it.  So much more fun to share happy and strong thoughts, than when I am down, weak, tired and feeling ALL the symptoms of what chemotherapy can bring.  Denial is sometimes what keeps me strong, denial that my body will get weak and that the symptoms that are truly bugging me are going to slow me down.  OK -- I admit it, I have cancer and the chemotherapy is getting to me!  I am so SICK of being sick!  I don't like the way I look, my bald head, lack of beautiful hair, sunken eyes, pale face and lack of energy that I know I have deep inside.

This is a late post for RCHOP #4 - as it was last week.  Of course having the actual treatment of the "poison" going in your body is one thing, but the reaction to it is another.  The accumulative build up of the so far 2 1/2 months is starting to take affect!  

Symptoms that are BUGGING me are: 
1. Moodiness -- I think I am going to beat someone up.  Best I stay home and not let people bother me.  I had a few instances last week where I have no patience with people.  I have a very short fuse and expect people to be nice to me.  If they irritate me I let them know!  My friend Jessica says it is the prednisone.  Fun times!

2. Tingling of my fingers and toes when I run -- I realize now that the blisters on my feet was actually the fact that I can't feel my feet.  The tingling of my fingers when I type is very odd... it is tough to run in the trails as I feel I am going to trip and break an ankle at any step.  

3. Nausea & Heartburn - taking pills for this, but really doesn't help much.  It could be a lot worse I realize, but my appetite has lessened and I really am eating for fuel right now.  When I eat and the heartburn acts up it is nasty - just hurts, and eating is truly no fun. :(

4. Mouth sores -- OK - I thought I would escape this one after going through methatrexate and not having anything, but it is evident with the last cold sore on my lips and the inside of my mouth just burning from whatever food I put inside that they have arrived.  I take lysine like I did before and that seems to help, but the burning in my mouth is not going away so fast this time.  :(  I feel ugly enough as it is without having sores on my mouth.... hopefully it stays internal. :(

5. Exhaustion -- is that a symptom?  I nap daily.  I get so exhausted late at night I take it out on the people around me (see moodiness above).  It is truly tiring to be treated over and over.   I get blurry, fuzzy, dizzy --- lack of focus at work and really need to take a break.  Which I am planning and have been doing more and more.  I really need my rest.  So I don't become a BEAR! :)

OK - enough complaining...... thanks for listening.....

___________________________________________

But with all that said -we received week SUCH GREAT NEWS from Doc Mullally with the results from the PET scan!  The PET scan showed tremendous results and minimal cancer remains in my body.  It works - it's gone!  My body is reacting well to the treatment and we are killing the cancer.  

Highlights from the Cooley Dickinson report:  "No metabolic activity is seen within supraclavicular nodes as was noted previously.  No activity is seen within a previously markedly metabolic pericardial node with node previously measured 9x16 cmm and now measures 10x7mm.   The spleen previously measured at 16cm in AP dimension is  now 12.5!  No metabolic activity suggestive of bone involvement.  Overall TREMENDOUS response to therapy has occurred with marked reduction of tumor volume & metabolic activity.  Mild residual metabolic activity remains.  SUV in the spleen has gone from 17 to 3.6.   

____________________________________________

Back to RCHOP #4 -- after meeting with the doctor and setting up shop in our usual place with my MAC, my work computer (which I am sorry - I didn't get to work) - my iTouch and iPad with Steve's headphones to listen to Pandora -- got my snacks and set up camp.  It has to be a funny sight if there are people in the waiting room to see us pile in to office with our bags ready for the day! :)  I downloaded a bunch of new music while they took some blood tests as my Blood Oxygen levels are getting lower (we hope to monitor them for Chicago - so I don't lose too much energy and may need some additional medication to combat).  Then listening to music and some new books on the IPad kept me busy throughout to the point where I did not even get a nap.  Which is a bummer, because the "Benedryl Nap" is amazing!  :)

New nurse in the office (training) -- didn't memorize her name, but she is all smiles and a joy to have in the back.  Her fun attitude and light heartedness made my day. 

Treatment ended around 4 pm on Monday so we were due back for the shot 24 hours later.  My mood was not good and I ended up in tears on the second day - accumulative affect of all of the drugs and time of treatment on my body.  I have no patience for "mean" people and just lost it.   It was good to talk to Dr Lindsay about it and I have since recovered.  :)


Inspirational Shirt of the Day:  2008 Boston Marathon
Charlie says that they are limiting the field to 25K runners so I best figure out if I am going to be in town to run this next year with the Dream Team!  :)  2009 was a good year for me, but before DetermiNation and before cancer!  My how things have changed in such a short time frame!


Halo Protex Skull Cap --- LOVE this cap --- need to get another black one!  :)   Wish it came in pink and dark purple...  for obvious reasons! :)






Below are some great photos of Dr. Lindsay's cute dog that wanders the office.  Her little feet are so quiet and soft and she really has a look of "love".

I love the photo with the patient's bag that says "Keep Calm" -- something I need to do right now, and always.  :)





Thanks for stopping by ---- please leave a comment --- I love to hear from everyone! 
Thank you to the BU for the flowers & Itunes certificate! 

Thank you to everyone for your cards and notes!  It truly means a lot to me!


Tuesday, September 21, 2010

The Dream Team: Dreaming of a Cancer Free World & DETERMINED to make a difference




The Dream Team?  



Dreaming of a cancer free world and Determined to make a difference supporting the mission of the American Cancer Society in the fight against cancer and creating a world with MORE BIRTHDAYS!!
The Fearless Foursome?  
A group of 4 that connected and had such a great time pre-race at the Boston Marathon as part of the Boston DetermiNation efforts - For Cara, Charlie & David it was  their very first Boston marathon in addition to making a difference raising the dollars to support the mission of the American Cancer Society!  Here is the story of some amazing athletes that CARE...
This past spring I ran my 5th Boston Marathon and ran it as a ACS DetermiNation runner (our Charity Runner Program).  It was my 3rd time running for DetermiNation and I had raised a little more than $1000.  The best part of running is sharing my experiences and meeting new people.  I love to meet new friends where ever I run and this was the epitome of it all for me, combining my love for running with my passion in the fight against cancer!  We were picked up in the morning by an ACS van driven by a volunteer and all piled into the van --- DP Pittman was there (I had "bumped" into him on Twitter - and we were tweeting friends meeting for the first time).  Steve dropped me off and I introduced the crew and hopped in the van headed to Hopkinton that morning.  I got to chat with Charlie -- something about his pink hair just makes you want to chat with him and get to know him ---- obviously fighting cancer for a reason!  And Cara was there too -- but it wasn't until we unloaded from the bus had the group photo and chatted some more....  The four of us clicked and I gave the tour (being the repeat "customer" at the marathon is definitely a bonus.
 We took our photo by the "It all starts here" sign in Athlete's village and did a lot of people watching as we stretched and got ready to head to the corals.  Everyone at Boston is "seeded" according to their "qualifying" times.  So we all were in different spots for the start.  OFF goes the gun and we were headed to Boston.  It was so cool as a DetermiNation runner they had people at the finish to escort us to the Park Plaza hotel.  So after finishing this clinical study blood test I had volunteered for and then finding my NUMBER ONE fan - my sweet husband Steve.... we found a volunteer and go to the after "party" support.  :)  There we got to chat with Cara & DP some more - Charlie ran way too fast and wasn't around at the finish party.  
So - we all have connected even more through Facebook and now Daily Mile.  It truly has been a Dream Team --- we call ourselves the "Fearless Foursome" and all plan to return to Boston and run for DetermiNation once again next April.  Since my cancer diagnosis these four have truly virtually been there for me - with encouraging comments and notes and cards too!  Cara & I are planning to run in costume (Bat Girl & Wonder Woman respectively -- costumes made by my dear sister!) and we are planning a get together of the crew when we are in Chicago on 10/10/10 weekend!
Photo below:   Pancake Breakfast (note i am not in this photo - we missed it.  :( ))
Here is a little piece on each of these incredible runners!   And if I get to share my story in Atlanta, I hope that they will all be there in person!
***************************                              *************************                    **********************
Cara Turano
aka: "Batgirl"
Age: 32
Home:  Atlanta, Georgia
Chicago #3157 (Elite B)
2010 Boston Marathon time:  3:18:09 / 7:34 min/mile
Marathons run to date: TBD
Marathon PR:  3:18:09  - Boston!
Favorite Running Quote: The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.- Martin Luther King, Jr.

Hello?  Could running a marathon be more about challenge and controversy?  How about doing it while on chemo?  It is not how you stack up at the start, but your ability to harness the pain and use it to your advantage.  My actual favorite running quote is a quote of my own....You say 'you can't...' and all I hear is 'try harder.'
Goal for Chicago (4th marathon?)  Support Nancy!  Run fast! Have fun!
Special note:  Cara is "pacing" me as a support running in the Chicago marathon.  Although I will deter her if I run too slow for this speed demon!  :)  I am running dressed as Wonder Woman and she will be Batgirl.  My sister Laura is making our costumes!  Such a fun, smiley, happy girl --- you totally want to hang out with her!
Why DetermiNation? 

Simply said -Mama T
Photo:  Cara's Team in Boston!
Why DetermiNation....I sawa DP Turtle on TV and I knew Mama T would be in between chemo and radiation for her Stage 4 colon cancer. She is such a super supporter of me, I wanted to do something that would honor her. She is my hero (and so are you) and I was running Boston and it was the right thing to do. Mama T and Tom missed NYC when I qualified and that was a tough day because she was recovering from surgery. Boston was a celebration of accomplishments and life! I would not have had it any other way. :)
In Boston, I raised $7500 in just over 5 weeks.  It was inspiring for me and I was honored and so was Mama T.

Favorite Marathon Memory....My absolute favorite marathon memory is post NYC last November. I had a PR by 17 minutes and had qualified for Boston without my parents there, but an AMAZING support crew of extended family. I finally found that crew outside of Central Park and called my parents. Mama T was so proud and about 6 weeks from starting her second round of chemo. Her direct quote was "Well, we missed New York, but we will see you Boston. I don't care what my treatment schedule looks like...I WILL be there." I think she hung up after that...talk about determination! We Turano's are a clan....sorry Nancy, now you get ALL of US!

Goal for Chicago....6th marathon and to cross that finish line with Nancy who is on chemo, rock my Bat Girl outfit and maybe get a victory kiss from one Charlie Johnston...
What does Charlie say about Cara?
Charlie Johnston Since meeting in Boston, I have had the pleasure of getting to know Cara as a person and a runner. Her tenacity as a marathoner and DetermiNATION fundraiser is rivaled only by her charming personality and complete devotion to her family and friends. Along with Wonder Woman (Nancy) she is truly among the greatest heroes I've ever had the honor to know.

Charlie Johnston 
aka: The Flying Pink Bandit
Age 27
Home:  Sparks, Nevada
Chicago #1577 (Elite A)
Special note:  Charlie has been running for only 3 years!
2010 Boston Marathon time:  3:05:37
7:05 min/mile
Marathons run to date:  Chicago will be his 21st marathon! 
Favorite Running Quote: "All it takes is all you got." —Marc Davis.
Why Relay?  Why Determination? 
Cancer first came crashing into my life when my mother was diagnosed with breast cancer in 1993, I was 10. I got started volunteering for the ACS in high school through the Relay for Life and eventually captained teams and sat on Relay committees for six years. Boston 2010 was the first time I ran for DetermiNATION. With the help of family, friends, and co-workers we raised about $1,000. 
What does Cara say about Charlie?   Cara Turano "Wow! He dyes his hair pink and both Mama T and I think he is an amazing young man. Charlie is wonderful and smart and passionate about life. I am lucky to be a part of his life."
Goal for Chicago 10/10/10:  Fast!  Flat course!  PR?  Lots of marathons this year, so ANYTHING is possible!

**************************                            **********************************                   ********
"DP" Dave Pittman - 
aka:  "The Turtle"
Age: 31
Home:  Chicago, IL
2010 Boston Marathon time: 3:31:54 - 8:05 min/mile pace
Marathons run to date: TBD
Marathon PR: – 3:28.42 – Bank of America Chicago Marathon, Oct. 11, 2009
ACS DetermiNation or Charity Runner marathons participated:  Boston 2010 and many more!


Favorite Running Quote: 
Maraton PR:  3:18:09
Why DetermiNation?  “Turtles against cancer” is a nod to the parable of the tortoise and the hare, which is a fitting analogy both for David’s running pace and for the ongoing fight against cancer. But that’s not all — “turtles” also refers to a tasty treat you can receive for supporting David. He became a DetermiNation athlete in 2003 as a way to honor his sister, who has fought off cancer since 1988. (Learn more about the story behind “Turtles Against Cancer.”) In 2004, he joined the volunteer committee that recruits, encourages and supports DetermiNation runners and triathletes throughout their training and races. Since he joined DetermiNation, he has raised more than $45,000 to help fight cancer.
Goal for Chicago 10/10/10:  Playing the stellar and much needed part of ACS DetermiNation volunteer and "Pitt Crew" for the Dream Team!   And YES there will be CAKE at the finish line!  :)  
******************************                    *************

Nancy Cook 
aka:  "Wonder Woman"
Age: 46
Home:  Belchertown, MA
Chicago #4399 (Elite B)
2010 Boston Marathon time: 3:23:17 - 7:46 min/mile
Marathons run to date: 26
Marathon PR: – 3:05;59 Boston 2007 - 7th master
ACS DetermiNation marathons:  VCM 2009, Marine Corps 2009, Boston 2010 & Chicago 2010









Photo above:  Running  the last 3 miles of the Pack Monadnock Trail Race which is all UPHILL - the steepest I have ever run!

Favorite Running Quote:
 Always remember to keep your eyes forward, lift your feet up, and duck when you have to..... 
and if you fall... roll with it, stand up and do all you can to keep going, 
because no one is in a better place to help YOU than YOU. 
 - Nancy Cook - on trail running, cancer survivorship and life
Recent Highlighted results: 3rd master - USAT NE trail running championships - June 2010, 1st in age at the Marine Corps Marathon in November of 2009.
Maraton PR:  3:05:59
Why DetermiNation?  (NOTE:  I wrote this in Feb 2010)
The program is such a perfect fit for runners like myself --- sign up, make a committment to run and raise money by sharing your story of why you want to fight cancer.....  the online fundraising function is user friendly, the Boundless Fundraising tool on Facebook has been a great help and reminder for a soft outreach and the Training Peaks program has truly kept me on track with daily tips and reminders of the miles to run.  I recommend the program to anyone that wants to run a marathon, 1/2 marathon or event that DetermiNation is connected with nationwide.  Now with the Rock n Roll partnership where ACS will be highlighted - more people will become aware of the program and feel even more accomplishment when they cross that finish line --- to make a difference, create a world with more birthdays, and as I celebrate another birthday in June --- I will again be training, getting stronger and fighting cancer so that others may survive this terrible disease.  
Note on 9/2010: Who knew that I would personally get cancer and be fighting it myself -- I was the healthiest person I know.  And now glad I am a runner, knowing it helps me be strong, stay balanced, be healthy and continue to inspire others.  

This team has been amazing to get to know better in just 5 short months.... We will all be there in Boston - running for DetermiNation once again and continuing to inspire other runners, people who want to be active and just people who want to make a difference.  Cheers to some amazing, caring, accomplished runners sharing the good word nationwide. 


What does Nancy say about Cara & Charlie?  
They are a fun and crazy couple that I love to have energize my life!  They both have a sense of energy and humor that really fills the world with Hope & laughter & inspiration.  It is because of people like Cara, Charlie & David (and of course Judy too) that I have met and got to know through running that inspire me to be a better and faster me!  :)


___________________________________
Special Mention to my dear friend and marathoner who is my team mate for ACS DetermiNation Chicago and my colleague with the National Relay Business Unit - and deserves a special shout out too!
Judy Reichling
aka:  The Energizer Bunny
Age: 50
Home:  Lawrenceville, GA
Chicago #21212
Need to get Judy on Daily Mile!
2009 Marine Corps Marathon Time : 4:54:28 - Top 56% in age
Marathons run to date: 6
ACS DetermiNation events:  2 (Marine Corps 2009 and Chicago 2010)
Marathon PR: – Grandma's Marathon - 4:46:48.

Chicago 10/10/10  will be my 7th Marathon... Disney 2, 2003 and 2004 , Chicago 2, 2005 and 2006 , Grandma's Marathon 1, 2004 , Marine Corp 1, 2009.     I am really 52 :-( .. an old fart!  Funny that you called me the Energizer Bunny.. that is what Tom always calls me... I am slow but just keep going and going and going... I run and raise money for Determination for the people that I love and some that I have lost.  In particular this year is for Jan, who fought a four year battle against cancer and for my dear friend Nancy who is amazing and fighting her own fight against cancer right now!  There are so many others .. Phylecia, Dick, Joy, my niece Laura...unfortunately way to long a list of the people that I care about.  I am passionate about my work with the American Cancer Society and about finally bringing an end to cancer!!!  My words of wisdom from just last weekend are "don't drink too much the night before and then try to run 20 miles in the Georgia heat"!! It was 85 degrees when I finished.. bleech!!  Running keeps me sane.  Running is my time to think, plan, relax, and enjoy friends (when running with others).   It is an addiction and I love it! 



In Summary - 
"Why DetermiNation?  Encouraging others to get active, stay active and keep the data in order to do the best they can do is a true strength.  DetermiNation allows the combination for raising funds for the American Cancer Society mission while setting the high goal of running a marathon and sharing that experience with others.  It is like forming your own cheering section in each marathon.  And all along feeling like a champion no matter what time you cross that line." 
- Nancy Cook, soon to be 4 time ACS DetermiNATION marathon athlete, mom, wife and currently undergoing treatment for Diffuse Large B Cell Lymphoma!  

Thanks for stopping by --- please leave a comment below to show your support!

Friday, September 17, 2010

The Good, The Bad & The Ugly

In the 2009 season Steve & I took a trip with Dr Marc Read and his wife Eileen and stayed with Harry in Jackson Hole.  It was great because we got to see and spend some time with Suzy Kneeland and her brother Drew and friends.  I truly love that area, the mountains and wildlife are amazing.  I remember the morning right after breakfast watching a mother moose walk right through the front lawn.  The snow was glorious, we took a day trip to Grand Targhee with the crew and got the full affect of enjoying the view of the Grand Tetons.  There is an easy trail down from the top of the high speed quad leading you to these trails respectfully named the Good  - the Bad - and the Ugly.  The trails have meaning to me as I love to ski the steep and gnarly stuff whenever I can.  I remember when I first visited Targhee and having my photo by the Ugly sign. It was a VERY tough trail to ski for me back then... :)  But this time I skied it with strength and ease....  and with my sweetheart who has coached me to be to strive and be the best I can be.


All great memories, with my sweetie and our great friends we meet where ever we go.  So now, that I am "skiing" the steep stuff -- below is my current interpretation of what I am going through...  


Photo below:  Schuyler - J5 race at Willard Mountain 3/2010

The GOOD
So... getting on to the real meaning of my post --- today was a GOOD day!  We went to the doctor for the check up after getting the PET scan yesterday to hear the great news that there is only minimal evidence of cancer in my body.  The spleen is back to normal size, blood count is down below 11 (which isn't so good - but ok)  --- but this is such great news!  The notes from the doctor interpreting the scan was that I am showing TREMENDOUS response to chemotherapy and making great progress.  I am strong.  I am running.  My training is still strong and Chicago is 24 days away!  Laura is making our costumes ---- Wonder Woman will be wearing a red lycra running singlet with WW monogram & a 12 inch circle skirt and a little red cape!  BatGirl will be in all black singlet & skirt with monogram and ears with the cape (of course).  We have our tickets, hotel and can't wait to see Judy & the Fearless Foursome from Boston!  Chicago Here We Come!

The BAD


As of last week, my eyes are all swollen, feels like conjunctivitis with swollen eyelids and sty in each eye.  It isn't conjunctivitis (just a reaction).  They hurt and water up to the point where I can't focus (the computer HURTS! Which is a BAD thing!).  Then this week I broke out in hives all over my body.  Benedryl and more steroids is the help on the way --- but in the meantime I am not a happy camper.  And exhausted (which may be some of the cause here too).  In addition my fingers are feeling that tingling feeling mentioned as a side effect (it hasn't effected anything except perhaps my typing.  :))  The plan is to get more sleep.  

The UGLY

OK - yesterday was a bad day - so bad I started to get ugly (and no I don't have my period).  I headed to the hospital to get my PET scan and just really didn't start in a great mood.  It was 2 days in a row that we missed the bus and Schuyler honestly hasn't been easy to get to bed or get out of bed and it is all just getting to me.  My patience on everything has been wearing thin.  Lots going on at work and pressure has been building --- at the same time I have only been running 2-3 miles a day this week and  it hasn't actually been enough to keep me sane.  Longer is better, believe it!  The tech came out and walked me to the room (left Steve behind -she said there wasn't enough room, although the last time he was allowed in for the first part of the testing).  Then she gave me a hard time for using my iPad and wanted me to stay "quiet" so there wouldn't be any muscle showing on the testing.  The signs in the little closed space were glaring and shared CAUTION, BEWARE, RADIOACTIVE (all unsettling images) and then after she "yelled" at me the second time for sneaking my iPad out - she asked if I wanted music... and then turned on this top 40 crap.  Talk about NOT relaxing music!  I was pretty pissed at her so the next time she came in I told her to turn off the music.  You could say I was a little moody, because she had me in tears.  The last time I was here they left me in that room in the scanner and didn't hear me when I called (I let her know that too -- and she took offense right from the beginning).  I guess this is hard to explain to give you the full effect, but the last piece was when we asked for the CD of the imaging and she asked us to wait.  After 10 minutes I was streaming down tears and wanted to RUN away from that place.  

Needless to say we left before getting the disc.  My patience was wearing thin and at that time my eyes were swollen twice the size from crying so much.  

Then we went to Post Office to send some clothes back that I packed after buying them online and I didn't like them - they are all too big!  :(  So we got there and the guy says that it is going to cost me $10.   Twice as much as it would have cost if I went with the home pick up UPS option.  I was ready to walk and he offered me an envelope could pack and it would be $4.  So I emptied the box repacked it and went to the other lady.  She weighed it and asked for $6.  I told her that I swore he said $3.95 and she snapped "NOT IF IT IS IN A PRIORITY ENVELOPE!" --- I snapped back "YOU DON"T NEED TO BE NASTY!" (my negotiation skills were not kicking in so well today) and gave the cash and walked out crying again!  ARGH ---- Poor Steve..... he had to put up with my inpatience all morning and just gave me a hug.  

I totally needed to go home...  I vented.... I got better.... and then when I got the great news today --- it's all good and I feel great once again.  They say it can be irritation and moods caused by the steroids (Prednisone)....  so watch out! :)

So that is my update --- I have been on a high from all the amazing comments on my video posted below.  It was truly an amazing experience.  I am on a high now from the results of the PET scan. 


Next week I start treatment again on Monday - - meet the new doctor that is going to be handling the Methatrexate portion of my treatment at Baystate on 9/23.  Hoping to have a great weekend on the boat, get in a couple long runs, and maybe a little golf, get my brakes fixed, work on the rock and get ready for Schuyler's birthday.  :)


Sharing a couple of my latest favorite quotes below: 


"I love Tuesdays, almost as much as Wednesdays, better than Mondays, not as good as Thursdays, thinking you can't beat Fridays --- until you hit the WEEKEND! :) Enjoy each and every day!" 

-- Nancy Cook, on Life!








'If you have a task to perform and are vitally interested in it, excited and challenged by it, then you will exert maximum energy. But in the excitement, the pain of fatigue dissipates, and the exuberance of what you hope to achieve overcomes the weariness.'  - Unknown



Thanks for stopping by --- please leave a comment!

Sunday, September 12, 2010

Bald appearance brings on standing O at the NEDIV Relay U!

Here it is -- I am posting the video of my presentation at the NE Division Relay For Life University.

 It wasn't easy, telling my story for the first time.  I had a tough time practicing it, with the tears welling up in my eyes and having a hard time finding a flow for a 7 minute --- "let me tell you my life and stress" - presentation.  Although Steve is quick to remind me that I do like to talk about myself.  :)   I had all kinds of great ideas, all kinds of wonderful thoughts, humorous thoughts and had my written notes and bullet points there to get it down so I could get it out and hopefully be well received.  I was thinking that I wanted more audience participation (so they don't fall asleep - kidding), but you never know how that is going to go, so I built it in and even if it went off just a little I thought it would be good to have that interaction.  But then it was about the story and the humor.  So again, here it is, I didn't get in as many as the fun things as I had hoped and rushed the beginning, it was a little all over the place, but as Steve said when we watched it later, as soon as the hair came off - - I seemed to relax and it got better from there.  :)

I hope you enjoy the presentation --- Personally it is pretty funny to watch yourself speak and see the shake in my voice and hands --- but it wasn't too bad for the first time EVER  sharing my story with around 400 people, a few I know, most I don't know....  I know there are quite a few things I will change for next time, and I am sure it will be a much smoother presentation and hopefully I will get in more of the pertinent points and not wander so much and get into the details that may not be needed.

It was so great at the end with such great people giving me hugs and encouragement.  Sue Ann was fabulous in her position as VP of Relay in New England putting on such a great Relay U.  She was there for me a midst all of the craziness of coordinating the successful event  -- I thank her for that and for asking me to share and hopefully inspire others.


  It was good to see and meet some amazing volunteers there too.  Dick, Laura, Gordon, Ben, Mark, Mary Kate, Lynn, Bob A, Dan, Susan and more!  To be there and feel the passion of all these volunteers making Relay a HUGE success in New England is truly and inspiration to me!


Please don't forget to leave a comment if you stop by!




Some other photo highlights from the event below: 

Me with Don & Peg (CEO & COO of NEDIV)



Sue Ann, Judy, ME and Kelli



Steve & I on stage after the presentation 
(note Steve holding onto my hair that I inadvertently left on stage)  :) 





Friday, September 10, 2010

NEDIV Speaking Notes: "I am a Survivor"

EMCEE:


When it comes to the fight against cancer not all of us have been hit directly by cancer; however, we all have taken the stand that we will rise above cancer until it is defeated.

In the words of Vince Lombardi, “It’s not whether you get knocked down; it’s whether you get back up.”

And now someone who has done just that …Nancy Cook... a team captain from the Quabog Relay in Western MASS, National Director of the National Corporate Team Program, whose 16 year career with the Society began in New Hampshire.

ME:
Thank you everyone.

As a top competitive master athlete in the New England area being on the top of my game is something I am very proud of…. I am poised to fight back. I pride myself on listening to my body in training. When I found a lump in my stomach in mid June my body fat was right around 16% and you can feel everything! My amazing husband Steve pushed me to go to the doctor and by the time I went in for the biopsy my spleen had doubled in size and at that time we were told that I had cancer. It was crazy. I had just placed 3rd in my age at the USAT New England Trail Running Championships, and was racing every weekend. Before that in in 2007 I was 7th master at the Boston marathon finishing in 3 hours and 5 minutes. And in 2009 I won my age group at the Marine Corps Marathon. I was the healthiest person I know. You don’t want to piss me off! My family, my friends, my co-workers were all floored when I told them the news – it was stage 4 Lymphoma. And me – I was in denial ---- with my daily routine of running long miles, balancing my family life, my work and all our sporting activities, there is no time for cancer.


I am a survivor.

It hit me hard and I was full of questions – Is it curable? What did I do wrong? Will I die? What is chemotherapy anyway? Can I work? How long before the cancer is out of my body & how long before I am bald? How will my eight year old son Schuyler react and cope with a sick bald mother? I did know one thing - I don’t like being sick.

You may wonder what is like not having hair. I sure did. It was scary and I had tears in my eyes as my husband shaved my head right around the 2nd chemo treatment - after pulling out clumps of hair it was definitely time. But I am now sporting the Olympic swimmer look as I water-ski and appreciate the aerodynamics when I run. I just hope it doesn’t come back gray! And fun times ahead if it comes back blonde!  My colleagues asked that I have photos taken of me at the “wig salon” with all the different styles of hair so they all could vote! We all had many laughs looking at the Nancy show! I miss the sweat absorption properties of hair and the extra padding. One day while trail running I hit and bruised my head on a tree branch... came up with some great quotes that day, but OUCH!


I am a survivor.


Now in the middle of it all I am in the midst of fighting back. I am ½ way through my chemotherapy treatment. OK – almost ½ way there…. But I am counting the days! Fighting back through inspiration, hope and humor…. I look for hope everywhere – after facing that moment that my life could have been taken away & having to share that scary feeling with my family – it IS all about HOPE. And once you have HOPE you can share hope and if you inspire others, they can in turn inspire you. The doctors gave me HOPE that I could still “run” the Chicago marathon, which will be my 27th marathon. I had signed up and am raising money for ACS through DetermiNation. Doc Mullally did say it is a little freakish – but seeing my fitness level and drive, he says it is possible – of course that was right after he called me a “beast” (in a nice way of course).. So now it keeps me going – keeps me pushing – and in my intense way of doing things – keeps me fighting back - strong. I am running in a Wonder Woman costume, alongside a friend who will be dressed as Batgirl – if not just to make a statement, but for inspiration and crowd appeal. I will run that marathon. I will finish.


I am a survivor.

I recently attended the UTC East Hartford Relay For Life and had the opportunity to walk in my first survivor lap – and wear my first sash & purple shirt! It was more amazing than I ever imagined. Needless to say I love Relay more than ever.. My husband Steve in his caregiver sash remarked that “we” have not finished chemotherapy, so are you a survivor yet?” My response? I lived to see another day right?


Yes – I am a survivor!

So just remember:

No one can hold you back from doing all the things you want to do. Just keep your goals in sight, listen to your body and take one day at a time. Some days will be better than others, but every day is a blessing – so make each day the best it can be.

I am a survivor.
I am fighting back.

Thursday, September 9, 2010

Telling my story --- >>> Take 1




Not sure how many may see this post as it is a rehearsal for my presentation on Saturday for those that may be attending the Summit in Springfield....  but for the most part I think I am safe, not knowing the traffic to my site from local Relay leadership.   

This is a practice of my speech --- which really didn't go so well in my mind. 
 But it is a first try, so I hope to get better.  Gotta love Photo Booth!  :)  
I wish I could be just a little funnier.....   :)  I will keep practicing. :)  It was hard to do and honestly I was fighting the tears when I watched it back --- so try try again.








My notes for NEDIV Relay U Closing

Celebrate Birthdays 
Audience Participation =  Fight Back

My 46th Birthday
Lump discovery
Athletic Achievements
Cancer Diagnosis
Hope plus Humor = Healing

Quote:
 "It IS all about HOPE... and once you have HOPE 
you can share HOPE and if you inspire others, they can in turn inspire you."

Losing your Hair
Being Bald
Many Looks  - The Pirate Cap

Don't stop - keep pushing, keep running
Chicago Marathon
"Freakish"

Survivorship
UTC Relay
Caregiver

Quote:
"No one can hold you back from doing all the things you want to do.  Just keep your goals in sight, listen to your body and take one day at a time.  Some days will be better than others, but every day is a blessing. - so make each day the best it can be. "


Playing around with Photo Booth this morning --  some self portraits getting ready for my rehearsal.  :)







  

Saturday, September 4, 2010

Have hope. Find hope. Take control.

This past week someone close to our family was diagnosed with cancer.  Where do you start?  How do you advise someone --- cancer is so big --- so many diagnoses, so many treatments, so many different types of insurance and lack of insurance.  Working for the American Cancer Society I would advise that they should call the 800-ACS-1234 (800-227-2345) number and our call center is equipped to handle all calls in all situations and can direct you to an answer that meets your needs at the time.  They are amazing.  I have visited the National Call Center 3 times in my 15 years to see the training, the Quitline and how many calls they handle 365 days / 24 hours a day.  The other ultimate resource for answers is www.cancer.org which has just been changed for easier navigation and updated --- these are resources for everyone, all the time and are so phenomenal -- you need to see it for yourself.  

But - when you actually have cancer, you don't really know what you need to know, what you need to look out for or what you need to ask.  So many people face this disease alone, without a true caregiver or someone to help and guide them along the way.  I am so fortunate with my background in the Society and having such an incredible supportive husband, colleagues, friends and family -- well I am set up for success in so many aspects.  But most are not.  Family will be there and try to help - and yet, they may not know where to start.  

Ask - what type of cancer, what is the diagnosis, the prognosis and be sure that you get the best care.  Find out what your insurance allows to be aware of the financial burden and be sure that you get all that is "covered" for your plan and you follow the guidelines that they have set so that you get the maximum benefit without the stress of trying to back track with rebuttals and more paperwork.  For someone who never gets sick this was huge for me to understand the process.  Call the insurance company, get to know your case worker and nurse if they assign you one.  Make sure that they are getting the information they need to be able to move forward, especially when you are trying to make this all happen fast.  Keep track of what is approved, denied, and paid.  Then keep track of any bills that may come in after.  This has been so hard for me -- I have a notebook and was real good at first, but keeping it all organized it tough.  Be sure that when you go to a doctor "out of plan" that it is approved and if possible have the letter in hand of what from that treatment is approved.  It takes the stress out later -- believe me.  

Bottom line -- this is my advice ...
1. Take control of your care.  Be sure you are happy with your doctor and feel that you are getting the right care and direction.  Hopefully have someone at your side to help you!
2. Get a second opinion.  Get the right diagnosis.  Get all the tests done early and wait for a diagnosis and not jump into a treatment plan.  Once they start it is more difficult to make any changes if at all possible. 
3. Clinical trials?  If there is a clinical trial available you need to get some phone calls in early to see if you are a candidate.  This needs to be decided right away.  Not all cases of cancer have clinical trials associated with them.  But if you are a candidate this is another source of HOPE.
4. Find and have hope.  Seek support and guidance.  Ask for help.  You are not alone.

AND
Celebrate you -- celebrate your friends and your family.  Live each day to the fullest. Care for others that care for you.  Be a friend. Celebrate your community.  Celebrate life.

Remember that every day is a blessing.  Remember those you may have lost to cancer or who have had influence on your life and your health.    

Fight Back.  Take charge of your health.  Make the first step today.  Be healthy.  Get started on an exercise plan  Make a difference in your community.  Relay For Life is a great support system...  there are more than 5000 events nationwide.  


Celebrate.
Remember.
Fight Back.