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"!

Thursday, July 29, 2010

Cancer Ain't no Kryptonite!

"Clear your mind of what was and will be, see only the task that is."
 Zedd - from the Legend of the Seeker

Sharing the news with everyone has been quite the experience for me ---- always the healthy one, always the one top in health and not wanting to share any kind of sickness, thinking I was giving in to it and it would take me over.  So I try to be well all the time.  :)  When I started sharing - I would get comments on how crazy this is because I am the "healthiest person they know" --- it was like I was talking about someone else.  A phase of complete denial, and it lasted for quite some time.  I laughed with Judy, saying how I would be able to wear the purple shirt!  Steve thought it wasn't so nice how I would spring it on people, friends that are close to me, but I think I did that because I really didn't believe it was truly me that had cancer.

But it is me.
I have cancer.
But I am still strong.
I can still run.
I am still me.

 After treatment and getting through that acceptance that this is going to be a "trek" to treat and get out of my system - I realize that I can still be "normal".  I really don't know how each day is going to go -- some days I feel better than others and late in the afternoon is always tough.  I get tired easy.  I don't feel motivated to do anything extra (so NOT me) -- and well my mind is just all over the place and hard to focus.

SO this post is dedicated to being me, still strong, as the title says, from my friend Gregg who emailed me earlier in the journey -- "Cancer Ain't No Kryptonite" and you are still strong.  You will beat it big time.  There are so many emails that have been inspiring to me, with words of strength about me and for me ---- I am truly blessed with this O SO incredible support system that spans the country!  :)

Sharing a couple of my flower photos -- my photography on my other blog has become quite an addition / obsession / distraction and really gives me strength and joy.  Hope you like the photos.




Here are some notes from friends that I have found incredibly motivating & inspiring.....

From Gregg:
Hang in there Nancy Supergirl. I have absolutely no question in my mind that even cancer will not even the playing field for all of the other runners who compete against you. I think this time cancer has picked on the wrong person - it doesn't have a chance against you.
I'm thinking about you!
Gregg (NHO)


From Cara Turano (Boston Determination Foursome)
Hope is the best thing to have AND I promise that if you run Chicago, I will run or run/walk every step of the way with you, holding your darn hand for every photograph possible! It would be my honor to run that marathon with you and in honor of you and in support of you.

I cannot wait to hear from you and of course you will be the cancer patient out running marathon....I think that means we can even slow down!! I am totally in for being your running partner - can we wear matching outfits??

From Ann McNamara, an ACS colleague in Illinois sent a nice note and has connected me to another amazing athlete, Kristin McQueen, who has cancer and has been running for ACS Determination since 2002, raised almost 100K and her goal this year for the 10/10/10 date is $10K. :)  Her story is great on her personal page --- please read it - you too will be inspired by her!

My friend Jana also sent a message to me this week and included a link to her friend Jax who has been going through her own struggle with breast cancer.  Jana and Jax are avid rock climbers, and both incredible athletes.  Her story is a really great story and I have just begun to read!  So great to hear of others going through cancer and staying fit and strong - as much as the body will allow.

There are so many that are "Running with Cancer" -- my dear friend Shelley S. from Tacoma sent me a book this week with that title.  Can't wait to read it.

Got some great cards that always pick me up and make me smile! -- one from Anthony, volunteer leader from Starbucks, a note from Elaine, volunteer leader from Delta.  Cards came from Kyla, Serena (my sister in law) and Steve's work all signed a great card and sent a sweet gift too!

Here is the poem from Serena's hand made card (she is a crafter and AMAZING!)

A New Day Soon Will Dawn

If life seems at its lowest ebb
because a day has gone wrong. 
Let not your heart be troubled
For a new day soon will dawn. 

And we can never be quite sure 
Just what it has in store
Since each one is so different 
Thank the one just gone before

As it penetrates the darkness
With its soft and tranquil beams
It calms even the most restless soul
ANd brings new hopes and dreams

So when a day has been troubled
And the night is dark and long, 
Life up your fallen spirits
For a new day soon will dawn.



Thank you all for your thoughts, prayers, power and strength.  It is so incredible to have so many people thinking of me and hoping me healthy!  :)

Please leave a note if you stopped by -- I love to read your comments too!

Tuesday, July 27, 2010

Don't go back to eating donuts! :)

I remember when I was sitting in the doctor's office after Relay weekend here in Belchertown.  I had my CT scan on Thursday and had spent 2 days volunteering at various times with the event and getting our team together to participate.  We had received a call from the Drs office and they said that Dr. Levheim would be back Monday and it best that I talk to her.  So - we enjoyed our weekend at the Relay, on the boat with family - our favorite summer things to do.  When Dr Levheim came in she had this look - look of concern?  worry?  Not sure how to describe it, but something wasn't right -- my enlarged spleen was about to have a meaning...  then she said it -- "Nancy - you have cancer, the CT scan clearly shows this mass that looks like lymphoma".  I was Sunk...  I looked at Steve, seeing the look of disbelief in his face..  and said, "Are you sure?" --- She replied "Well, not until a biopsy would we know for sure.  But yes - it looks like you have cancer."

This is crazy-- I thought and said out loud - "I am healthiest person I know - in the best shape of my life - what the heck!"  --- I eat well, I seriously exercise EVERY DAY. and watch everything, get my screenings and more.... the epitome of health.  Eek.  "Ok -- well what now - what do we do? " I asked....  "You need more tests" -- she said.  So we hurried out of the room to get the referrals and appointments, let's get it done, let's get it out of my body.  Let it begin -- that was it.  I am glad she made me wait until Monday - although it is all pretty crazy that this happened on my Relay weekend, as this will be my new "birthday"   - -  the day I learned I have cancer - the Relay will be my celebration of survivorship every year.  Count on it.

When my friend and colleague Jeff heard the news he said "Oh man - I am going back to eating donuts!" --- that statement put a smile on my face.  The first reaction from most people when they hear of my diagnosis is disbelief because I am in such great shape and watch my diet so well!  People often ask me what is my diet, how do I sustain this level of athletism through nutrition.  And now that I am diagnosed with cancer food takes on a whole new meaning, and different tastes, or lack of makes eating a necessary act, not so much a joy as it always has to me.

I have been on Weight Watchers in the past, my friend Judy got me into it and I recommend it highly just to get the discipline in portions - WW really teaches you the balance of eating and counting the points is so much easier than counting calories.  Good food in moderation equals a healthy weight.  It is affordable and there is such a large support network.  Very cool indeed.  I have lost up to 20 lbs on WW.  But in the past few years I have been able to maintain my weight through my food choices and exercise.

This is my typical nutritious day:
Breakfast:  Whole grain cereal with nonfat milk (my absolute favorite) with fruit of some sort (banana, blueberries or strawberries) on top.  OR McCann's Steel Cut Oatmeal (YUMM!) OR 2 eggs over easy, wheat toast and sausage patties (just for the protein). 

Lunch:  Cereal again - just for ease and I work at home so I need ease.  OR English muffin with PB & J (a true weakness).  OR a protein (Soy) frozen fruit (strawberries, blueberries or raspberries) shake in the Vita mix (add Shaklee Performance and sometimes use Physique) with OJ,

Dinner: We  love to cook together and get into habits with cooking the same thing time and time again and get pretty good at cooking that one dish.  I have various recipes that I love! 
Protein is key:  Fish, Chicken, Pork or Steak (right now we are on a fish kick --- love making scallops in the saute pan)
Salad:  Fresh tomatoes are amazing - I love making capresse with mozzarella, basil, garlic, EVOO, & aged balsamic vinegar.  We always have a salad.  fresh greens, fresh veggies
Starch:  Sweet potatoes are the best!  I also love Chiabatta with butter and garlic toasted in the oven.
Dessert:  Whip up strawberries in the Vita Mix - add Cool Whip -- the best dessert ever and so GOOD for you.  Always good to treat yourself - we have this most every night.

Snacks:  Almonds, Blueberries, fresh veggies

During this period of discovering I have cancer my apetite is supressed, my taste buds changing.  It seems I can't eat very much at all and honestly it doesn't taste that great.  Wine is something I really love, and it just tastes horrible.  :(  I am sure I will find what "comfort" food works and I will continue to get my nutrition so I have the fuel necessary to train daily as it is so important to me to stay in shape and be on top of it.  My health is what is going to keep me strong --- so that is my plan.

Please note:  I am not a donut eater, although Brother in law - John owns a Krispy Kreme in Puerto Rico and well - they just smell delicious - so I hate to be a Donut Downer!  When I was a kid I loved Chocolate Creme Filled and Boston Creme.  Sometimes on the way up to Mount Snow we stop and treat Schuyler to Chocolate Glazed DD's.  



Photo of me at my first marathon for American Cancer Society Determination  (our charity runner program)- The Vermont City Marathon in 2009 - I placed 4th master! I raised more than $1100 for that race
 and close to $5000 for the 3 marathons this past year (MCM and Boston too!)
Me at MCM in November 2009 - I won the master category!  Yay!


This the foursome that I connected with that were all running ACS Determination in Boston this past spring.  Charlie dyed his hair pink for his mom a breast cancer survivor (he runs for her all the time!), Cara is hilarious and such an amazing person (she rocked Boston!) - her mom was the survivor speaker at the breakfast for ACS and there is DP Turtle (aka David Pittman) a twitteraholic that is truly inspiring others with his adventures and dedication to ACS Determination as a long time volunteer.  GREAT GROUP of people -- I meet them everywhere, but this is truly a special bunch!
I ran a 3:23 in Boston and was pretty happy, although once you run a 3:05 PR it is hard to get thrilled about a 3:20 ish....  :)  Although when you look at it I ran a 7:46/min/mi which is still pretty darn fast!



Lastly, but most important -I am so excited that I have still have Chicago in my sites for October. 
Cara and Charlie and Judy are running and DP will be there to give us water!  :)  HA (he has another marathon in his plan -- but is going to be there!)

Please consider a donation to my efforts - I need to raise $1000!  Any amount is truly appreciated. 

Nancy Runs Chicago!

And if you are running Chicago and want to join my team - there are no numbers available as the race is closed out at 45,000 runners.   But you can join if you have a race number and want to make a difference through the ACS Determination charge!  It has been such a great experience as a seasoned athlete to have my running and racing make a difference in the fight against cancer --- it takes a lot of people to do a lot of great things to find a cure. 
Make a difference today -- join me or donate to my efforts if you can!

Nancy's Chicago Marathon Team
"Boston or Bust!"

Getting Wigged Out - Part 2

We made the appointment for the Pink Petal in South Hadley - home of Mt. Holyoke College - an amazing and beautiful town here in Western Mass, and right around the corner from our house.  Donna was recommended highly by Cheryl Nina Salon (aunt to Stephen & Samantha) and also by Dr. Mullally's office.  You drive up to this shop and it looks like a flower shop --- so beautiful and quaint.  Very "New England".  : )

I was definitely very nervous, this part of the the whole "cancer" thing doesn't make me feel very comfortable, as it is very evident that you have cancer and in chemo when you lose your hair.  Scary.  And while I still have my long hair (longer than it has been in a long time...) I am still in "denial".  Doesn't seem possible.  And when I feel good, I have a hard time remembering that yes, I have cancer, and I am in treatment.  Crazy.

My husband Steve is so incredibly supportive, he has been tight - right by my side every inch of the way.  His undying love is so strong, seems stronger now than ever, if I thought that were possible.... but it is true.  A true caregiver, he gives the strongest meaning to the word.  He holds me, monitors my symptoms, listens to my pains, prays with me, heals with me, loves me so so much.  This experience has brought us even closer than ever - he is an amazing man - dedicated to me each and every moment.  I start with that because I think he really wants me to continue to feel beautiful and like "myself" and knows that with hair that just may be possible.  :)  He looked into the wig opportunity right from the beginning by asking Cheryl and we were secure in the fact that Donna at the Pink Petal was it!  He held my hand as we walked up the steps onto the porch to the shop that was a renovated old home, and gave me a squeeze.  "I know your nervous, it's ok, it's all going to be ok..."  he said with his usual warm and loving smile.

The shop was packed!  Crazy.  There were about 5 women inside shopping --- wigs, clothes, prosthesis, "Save the Tatas tshirts, jewelry... and more.  What a cool shop.  I felt like I had been invited into a "club" - a club of cancer survivors, and most evident breast cancer survivors.  Working for the American Cancer Society, breast cancer is the most common cancer for women, women fighting breast cancer are very passionate and that passion comes out in events like Making Strides Against Breast Cancer - the ACS walk for breast cancer and others like Race for a Cure for Susan Koeman, etc.  That passion to fight breast cancer because it hits so many of our loved ones is just so powerful!  So there we were in the room - I had my 10 am appointment and I was just a little uncomfortable, but looked around at the wigs on the maniquin heads and the scarves and hats.  Donna was behind the counter, a very sweet woman with a really welcoming smile.  She said hello and the other lady got all my information and took my "hair prothesis" prescription.  You can buy one wig and your health insurance will reimburse you up to a certain amount.  Good to know - glad I have insurance, because the wigs range from about $300-900.

Donna brought us into one of her wig rooms -- about 5 shelves line the walls with approximately 30 wigs all around me.  A big mirror and chair as if you are in the beauty salon.  She talks to us about wigs, how they are made and the different brands and a little timeline of what most people experience with hair loss.  I brought up my research from Kathy  -- the tied cap, something to look natural, looking at real hair wigs, etc.

Looking around at the styles and the colors --- i just know that blonde would not look good with my skin coloring, but it was fun to try them on anyway -- all the wigs are on display and they order one after measuring your skull to fit you custom.  We looked at some of the long hair wigs and some short hair, a little red highlights and even some blondes!  :)  Steve laughed, Donna smiled, I thought this was just so crazy -- seeing my head with this odd hair on top --- just weird.  But fun in its own crazy way.  We liked a few of them actually and then Donna showed us this new technology that is more heat resistant now -- a new style just out.  The hair color I tried on was a blonde highlighted light brown.  It was beautiful.  Looked like my style hair and Steve was looking at me thinking and jokingly says "Hmmm -- Hey you wanna go out?  My wife may get mad, but you are gorgeous!" :)
Donna went out and got a brunette of the same long hair style and truly it looked like my hair.  I really liked it. And Steve thought we should get the blonde too --- just for fun --- and so he can go out on a date with that "blonde"  :)

Success!  We looked at the real hair wigs (they are much more expensive and more to upkeep as they are real) = $800 plus. but decided since this is a temporary hair loss from the cancer and hopefully by March I will have some hair back, I was going to go with the synthetic new technology hair -- it looked good and made me feel beautiful.  For running I will wear a cap, a hat hopefully something so it doesn't fly off....  but the wig will be good.  And the blonde one will be fun.

Jeff & Judy think I should go back to the shop when the wig comes in and get my photo with various wigs on my head and people can vote on what they think looks good on me.  :)  Pretty funny, crazy Relay friends I have ---- gotta love them - they are trying to make this fun for me too.

The wig should be in soon - Donna said it takes about 5 days.  Her shop is just awesome, people in there, the customers and the sales lady are so friendly and warm.  So glad we went to the Pink Petal..   More to come on this part of the story....  stay tuned.


Oh ya - side note --- Donna is the Look Good Feel Better coordinator in the area, volunteering for the American Cancer Society.

The Look Good...Feel Better program is a community-based, free, national service. It teaches female cancer patients beauty tips to look better and feel good about how they look during chemotherapy and radiation treatments.

 I asked her if she would show me how to wear scarves and all that the program has to offer for cancer patients and of course she will when I come in again.  Very cool.

I didn't bring my camera in the shop with me that day and will have to go back as I really want to share it with you all.  Such a great place - inviting, warm and welcoming place --- great healing environment and Donna's smile really tops it off.  :)


Me and My "Caregiver"

Saturday, July 24, 2010

I think I swallowed a tennis ball.... but now it's Shrinking!

In the beginning when we (Steve and I) were monitoring the "lump" in my stomach it was the size of a tennis ball, we would laugh and joke that maybe I swallowed one of Oakley's tennis balls....  then another tennis ball and the one that was the spleen had grown more like a small football.  It was hard to breathe on my runs, and felt so odd.  Just imagine swallowing a tennis ball and running for 8 miles.... :)  Oakley likes to run with balls in his mouth, but I wasn't so happy running with this tennis ball in my stomach.  :(

It was crazy when the docs would bring out the measuring tape and can see how big it was sticking out of my stomach.  The masses were growing at quite the rapid rate, and now that I knew about them they felt HUGE!

In the best shape of my life these past few years in my early 40's, with my marathon (3:05) and half marathon (1:28) PRs from 2007, I am at the top of my game right now for running.  I had planned on running the NE USAT Mountain Running series again so I could run Mt. Washington again next year, and well actually have a few races on my calendar to compete if at all possible through treatment.  In the beginning of the series this year I was top 3 in my age and top ten in each race.  I love mountain and trail running!  Just checked out the standings of the series and I see I was #21 woman even after only finishing 3 races..... could have been top 5! :)  That's ok - maybe next year!

2010 photos -

USAT bronze medal for finishing 3rd in the NE USAT Mountain Running Championships (master)


Mt. Wachusett - 3rd in age (up and down Mt. Wachusett, MA)


Pack Monadnock - 3rd in age (10 miles mostly uphill in NH)


I will just have to keep listening to my body and be sure to do all the right things if that is going to be reality.  Training is going fine so far - although definitely time to focus and dig deep!

This week was another week of letting people know what I am going through and a flood gate of support and prayers have been headed my way.  I can feel it!  :)  I sent a note to colleagues and missed the Houston Relay Summit and was missed by my NCTP team and the "Relay Summer Camp" participants.  :)  Judy and Kyla and Lori all kept me up to date on the participant experience and even though it was a sauna in Houston - everyone had a great time and was truly motivated!

The lumps have already started to shrink -- we can feel they are going down in size already!  The healing and strength of prayer and all those darn drugs are taking their effect.  As Dr. Barnes explained in the beginning this is a fast growing lymphoma and is also one that the size will decrease quickly as well.
As far as my other stage 4 symptoms, my night sweats continue, but with little nausea and as the time after treatment gets further away I feel much better.

Here is our family picture on the boat --- right before I started treatment the next day.  You can see how large my stomach is at the top toward the rib cage.  What a fun and beautiful family we have!  I am so truly blessed to have such an incredible support system and love all around!

Friday, July 23, 2010

"Bag 'O Drugs"

Having cancer means being sick, really sick, sick enough to have to take drugs.  :(
UGH
Drugs.

I am not a drug person....  actually I have a really difficult time staying on a daily vitamin regime.  I used to be a Shaklee consultant and still use their great products including Physique, Performance, Vita Lea & Bcomplex, but like I said - I don't do a very good job of keeping to a daily regime.  

There was this incident back when I lived in Woodstock, Vermont, where I fed both Chester, my yellow lab at the time and my mom's German Shepherd, Katie food at the same time.  They fought with each other and my leg was bit in the tangle.   Gouged to the point making a bloody mess all over my mom's kitchen!  I of course tried to clean the wound myself and determined to get ready for my 1/2 marathon the next day bandaged it up.  I went to the ER and was given a tetnas shot, so I felt good to go!  After running 13.1 miles with the injury - the "infection" grew and I had streaking up my leg.  Crazy I know.  SO I went to the ER again and had it treated with an IV antibiotic that made me break out in hives - little red bumps all over my body.  Crazy story of my will and determination to run through everything and also an example that my body has a way of reacting to drugs!  :(

Now in treatment they are giving me some pretty strong drugs as mentioned and detailed in an earlier post, and then I have to take daily Alpurinol and Prednisone following treatment.  The feeling in my body is really strange, I feel jittery, fuzzy, and the metalic taste and change in taste buds is just very very odd.  Hard to explain, and I know this is just the beginning, but it is not so much fun. :(

So I have this bag I got from the Boston marathon this past year - a fun bag with inspirational and other quips on it for the motivated runner.  I love all the sayings and many apply to my current "situation" and give me strength.  I keep all my drugs in it and call it my "Bag 'O Drugs".  I labeled the top of the caps with their purpose or initial so I know what it is without having to read them all each time when looking.  I think it will be easier to keep track and think maybe a checklist so I know that I have taken what I need each day may be in order.  If they stay in the bag - I know where to find them and they don't get lost!  :)

In the "Bag 'O Drugs": 
A = Alpurinol  - daily med
P = Prednisone - 2 times / 5 days after treatment
drug for acid and heartburn
nausea drug #1
nausea drug #2 (in case #1 doesn't do it!)
sleep drug - as needed (haven't taken that one yet)
Tylenol - can't take Advil
Benedryl - for sore throat or other reactions


We need to monitor all symptoms and "report" if anything crazy happens.  I am not good at that either, as I hate to go to the doctor or complain period.  I have been trying, because from what they say if you don't stay on top of the symptoms they can get really bad and really side line you.  Which is definitely not what I want.

Feeling ok this week.  I have run 3 days and it was a true challenge of my focus.  I think the running stuff deserves its own post, but I feel strong even though this is Week 1.

Thanks for stopping by and checking in.  Please leave me a note.  I got a great call from a long time national, volunteer, friend, and cancer survivor Keith Warner out of White Bear Lake, MN.  He sent me a Hope Stone and is an amazing sense of strength and support - like so many more of you out there.  Thank you for your notes, cards and calls.

This week cards came from Nichole, Pat, Keith, Uncle Bill & Aunt Jeanette, Sue Ann, Carter, Linda, Marty & family.  So sweet of you all!

 We as a family truly appreciate you all.

Tuesday, July 20, 2010

RCHOP Treatment: Day 2

Chemo - referring to chemical therapy specific to the treatment prescribed to cure the cancer that is personally set up JUST for you.

My regimen is R-CHOP.  I found this great article that explains all the drugs here on LymphomaInfo.net .   Yesterday was a mixture and today specifically the R = Rituximab.  I needed to get the first dose of this one separate to monitor the side effects as it can be tough to take on the first treatment.


Drugs in the R-CHOP Regimen

The R-CHOP acronym is composed of the following drugs:
Rituximab - the magic bullet
Cyclophosphamide - Anti Neoplastic Agent
Hydoxydaunorubicin (doxorubicin) - an anthracycline antibiotic
Oncovin (vincristine) -- vinca alkaloid works to inhibit cell division
Prednisolone - a steroid that helps with anti-inflammation


"Cocktails" are served up in the back - the nurses station - we joked about this today when I was at the doctors for Day 2 of my treatment.  I will have to start a countdown clock to post here on the blog so you all know when I am done!  So the "bar tender" nurse in the back sets up the IV drugs as the patients come in ... today there were quite a few folks in for treatment - about 6 of us total.  Steve and one other caregiver topped it off.

It is interesting seeing the different types of patients and what they have to spend the time, most have ear buds and music, but some books and writing and like to talk to the others.  Others kick back in the comfy lounge chairs and take a snooze, often to the point of snoring..  (someone PLEASE wake me if I EVER start to snore).  :)  The ones chatting about their complaints of treatment and symptoms and being not so much fun was giving me bad feelings and wary of making any type of conversation with others .... and I turned up my Nano louder to my Country playlist of the day.  Complaints or Country music - tough choice, but my running music was just driving me crazy after taking my first prednisone this morning.  :)

I wore my tech T-shirt of the day for inspiration--- my 2007 Ford Ironman Triathlon 70.3 World Championship shirt --- a fond memory of racing in Clearwater Beach Florida.  Very proud of myself for making that trip and competing that day.  Check out the story here from my Mountain of Dreams blog.  Lots of great stories from my racing and running, including running tips and lately more photography challenges, but lots of inspiration none the less.  :)  I started this blog in 2006 as a writing outlet and a place to share my racing, running and triathlon experience, my photography and my life with others.  I love looking at the archives as well as the more recent posts mostly which have been on photography.  I house my race resume here and direct people here if they are looking for tips.  The best way to surf it is to go to the labels and click on what you are interested in.  I have a separate photography page now set up with Bloggers new interface and the challenges have been so much fun.

So I worked my time away on my IBM PC to try and catch up knowing I am not flying to Houston this week for the American Cancer Society Relay For Life  National Relay Summit.  It is hard for me knowing I will miss meeting some amazing people, new companies are invited specifically to attend and it is so important that they have a great experience, feel the Relay passion, enthusiasm, power and go home jazzed and ready to hit the ground running fueled with knowledge and resources and new relationships to grow in the National Team Program that I direct nationwide.  But -- I am proud as a good staff person that i have some amazing volunteers set up to facilitate and speak with my prepared powerpoint and tools.  Rene from Curves is amazing and Melanie from the Jaycees also fits the bill as a top level national volunteer.  I also have my great colleagues Kyla Harrison, Judy Reiching, Laura Donmoyer and Melissa Ames set to present and give the tools and answers.  I feel confident that everything will be great and so happy that I planned and got it all in place with all this hanging over me the past weeks it has been completely overwhelming.

SO I will miss the purple Kool-Aid, the purple boa's, the conversations in the hallway, hearing inspiration live, loud and clear, leadership volunteers from across the country --- it is a Relay Summer Camp for national leadership and my favorite conference of the year for lots of hugs and support.

Photo of my dear friend and Hall of Fame Member - Pat Flynn and I at the end of last year's National RFL Summit:



Oh ya - back to treatment....  that was me, so focused on my email and preparing that I forgot I was there... :)  I did get some symptoms, heartburn, headache, dry mouth and sore throat - that caused a flury of activity and doctor / nurse attention!  :)  It was funny - - same as when the man yesterday exhibited symptoms, they watch you like a hawk and slow down the treatment until the symptoms go away.  Very cool indeed.  Great teamwork and I love this place.

We got to meet Dr. Mullally's partner Dr. Lindsay Rockwell - a small lady - very bright, very very nice --- with very cold hands  (which I liked actually because I am burning up most of the time these days..).  She has this miniature Australian Shepherd dog that wanders around the office meeting and checking out everyone.  Very cute.  The interior decorating is all her too - says the nurses.. (i mentioned that they should have a braided rug in the middle of the floor and if it were up to her, they would!)  It is a very comfortable atmosphere and just a super office.  SO happy we are there for this trek.  :)

To be treated in the "Happy Valley" for cancer...  just gives it a new meaning.
My power song of the day?
Just Stand Up!  Love the words.
And I found a new Caregiver song too!
Umbrella - by Rihanna  - but you need to listen to the words from the mind of a cancer survivor.  :)

Here i am with my inspirational tshirt, my IBM on my lap with my headphones... pretty funny eh?  There is the nurses station in the back where they make the "cocktails" --- I asked if they want me to donate a blender for the cause, not sure if they got my humor....  :)  But some smiled.....  :)

Humor, Optimism & Strength will get me through - thanks for all your prayers and support!  And POWER thoughts as Amanda LaKier's girls have sent!  :)  You all rock!  And have some purple kool aid for me if you make the trek to Houston! :)

Steve was so gracious to take my picture again --- check it out they even gave me Relay purple for my bandage this time!  Thanks for stopping by and please leave a comment! :)

N

Getting "Wigged" Out!

Hope you liked my humorous title for the next piece of "treatment" I need to get through.... Finding the perfect wig(s) and how to "dress" my head! I remember the days as an Area Director for the New Hampshire Division of the American Cancer Society and recruiting and working with the hospital and Look Good Feel Better volunteers. What an amazing program -- now going through all this I see that this is one of the most important pieces of support, advice that should be there for women. We are predisposed to being self conscious, and work to look good --- things like shopping, manicures, pedicures and spa day are things you can do to boost your morale and inevitable your psyche and chance for success. So off to the Pink Petal today -- just to check it out on the way home if we aren't in here too late. Then I will make that appointmnet. :)
Here are the notes from my friend Kathy who has had the most and best experience with wigs of anyone I know - so I made the call for her support and guidance.  She just always looks so fabulous!... I first called her to let her know what I was going through and then asked her about her great experience with wigs. Her words of care and sharing of tips was just so good I wanted to share it with all of you and also have it as part of this online journal.

Wig Notes from Kathy:
  • Be sure you get some "wig tape" as active as you are.
  • Though, you will look great with just a scarf, bandana or cap when you're working out. : )
  • Also, as much as you are outside, you may want to look for a full-lace cap -- which basically means the hair is sewn in completely covering the mesh that the entire wig is made from. This way when the wind blows you can't see 'wig rows.' (the rows of elastic that the hair is usually sewn onto).
  • Do not be afraid to try on every single wig in the salon.
  • First find the style that works for you -- then worry about the exact right color.
  • Check the color in natural light against your skin to be sure that it looks natural.
Kathy's story:
Finally, I decided that I needed to get a wig. I loaded up all four children (at the time) and took them with me to the wig shop so that they could be involved in the process. Now, fortunately, we have at least three wig salons here in San Antonio. But, in smaller cities, you may not have the selection you need.
Do not -- I repeat -- do not order your first wig online. Because what you think will look good and what actually works for you are completely different things. If possible, take a trip to a larger city and plan to spend a few hours trying on as many wigs as you need to.
Kathy's 10 Tips - from a blog post a few years ago (below).
1) if you are looking for long hair (which is what I currently have) -- definitely spend the money on real human hair (with the cuticle intact). I tried several long synthetic wigs (even the "new generation" and "heat resistant" synthetics) and they looked great -- for about a month. After that the ends get "knappy" (for lack of a better word) and it gets very, very tangled all the time. The human hair is just like, well, hair. Definitely get "Remy" hair -- which is the quality of hair where the cuticle is still in tact and all the hair is sewn in in the same direction so it falls most naturally.

2) look for wigs with a "monofilament" top -- or in the less expensive wigs, a flesh colored mesh piece -- where the hair parts. These look most natural and really does look like your scalp showing. If you are caucasion -- look for the lighter wig cap. If you are african-american or hispanic/latino -- look for the darker wig cap.

3) you don't have to spend a lot to look great! The wig that I had on in my picture cost $39.99 and I swear I had so many compliments on it -- even women wanting to take my picture so that they could show their sylist what they wanted (it was then that I was very tempted to just take my wig off and ask the lady if she wanted to try it on! But, I didn't want to embarrass my husband.)

4) Benefits of synthetic hair -- wash with any mild shampoo, shake out and let air dry. No styling required. Very easy maintenance.

5) Benefits of human hair -- looks and feels great! Shampoo and style just as you did your own hair.

6) drawbacks of synthetic hair -- Not as durable. Can melt or singe with a sudden blast of heat -- say, from leaning too close when opening the oven. Or if your mother should accidentally wash your hair on extra hot, sanitary setting in the washing machine.

7) drawbacks of human hair -- you have to fix it. If it rains, you have a bad hair day.

8) drawbacks of all wigs -- wind, roller coasters, and water sports create challenges. But, there is double-stick tape for that. : )

9) and finally, the benefits of any and all wigs -- you can always have perfect color and highlights!! I am currently a red-head and it looks amazing with my skin!

10) The very best benefit -- once you get past feeling self-conscious -- is that you look and feel beautiful again!
_________________________________________________________________________

Here are some photos that I love of me -- looking beautiful -- from our Wedding Day in August of 2007. 

Photo of Schuyler before walking across the bridge - I think we were in negotiations here where I promised him ANY lego to make the trip to the altar with me. 
Photo of Steve and I  - Truly - Madly  - Deeply - after the "I Do's"  So in love then and even more in love now.
Photo of me at the reception with my alcoholic celebration drink of choice  - Champagne

The Good the Bad and the Ugly ----> Look Good Feel Better!

Steve has been so diligent in reminding me I need to find out information on getting a wig.  Not just because he loves my beautiful long brown hair, but so I won't freak out when my hair starts to come out, which is inevitable.... every doctor we have visited affirms it and mentions it.  It is the most visible thing about having cancer.  And it can be so emotional having it come out in clumps.  The video from MGH had an interview with a lady that said she had it shaved so it wouldn't "beat" her and it really was the best thing that she did.  Not sure what I will do, at least get a shorter cut soon, but hmmmm shaving it?  Reminds me of a fundraiser or 2.... and actually a whole entire Relay in the Eastern Division that shaved their heads for their local Relay For Life to set a Guinness Book of World Records... (I used to hear ALL the stories being the editor of our National Relay For Life Tracking newsletter for 5 years... what fun that job was to read all the great things happening across the country).  We shall see if I can come up with something creative or have the energy...  Any ideas?  :)

In the meantime after asking each doctor.... "I am going to lose my hair right?"  thinking maybe someone will say no...  but alas, yes it is going to go and probably when I am about 3 weeks in.   So we must be prepared or yes --- Steve is right -- I will freak, as I have freaked before when I lost little patches from minor Alopecia for the first time after having Schuyler.  Yes, 2 little spots first noticed by my friend Sue Ann at a national Relay meeting and I was in tears watching my hair come out.  It has happened a few times since then but I got this great topical steroid and it comes back in.  My hair looks a little funky (magic bangs!) but I hide it well with my part.  : )  

So now the real deal, time to look for a wig and find some hats that I will wear.  I am so fortunate to have a friend that has lost her hair and is amazing how she looks in a wig.  I admire her every time I see her at National meetings, as she lives in Texas and works for the American Cancer Society.  I called her the other day to give her my news and ask for advice.  She sent me a great email the other day and I will add it to this post with her permission as it is so wonderful her thoughts, experience and humor through it all.  

We are going to the Pink Petal Boutique today, a hair salon that specializes in wigs marketing to women with breast cancer.  Cheryl Nina from Nina's salon as well as both oncologists offices  have recommended her highly.  My insurance covers one prescription for a "hair prosthesis" which I found funny, but with the cost of wigs and the cost of treatment (even with health insurance) - every little bit counts!  

I made some funny notes yesterday on the way home talking to Steve about the Pros and Cons of losing my hair so here it they are: 

Pros and Cons of Losing my Hair
We will start with the cons to get the maybe "not so positive feelings out there"...
CONS:
1. Schuyler mentioned I would be ugly -- hope that he never feels that way about his mommy... :(
2. I will not feel like "me" without my long hair
3. Took a LONG time to grow it this long!  Not knowing how long or what it will look like when it grows back! ;(
4. The bouncy pony tail in the back keeps my pace as it slaps me when I run....  :)
I am sure there are more, but I need to change my focus...
PROS:
1. Aerodynamics!  (Thanks Jonathan) - I will be faster when I run!  Less drag and less weight!
2. I will get to wear all those hats I have bought through the years that I never wear!
3. Try new scarves?  How do you wear a scarf on your head anyway?  :)
4. Learn first hand about LGFB the ACS patient service program.....  
5. I could go blonde? (Is that a good thing?  Sorry Judy... :))
6. I could go red?!  Now that sounds like fun!
7. I could raise some money for my DetermiNation and Relay For Life efforts for the American Cancer Society!  Chicago is STILL on the books and hopefully with some strength a real possibility. And YES I will be a co-team captain for our local Pack 57 ROCKS team here in Belchertown.  :)

Here is a link to my Chicago Determination Page - 
"Boston or Bust" is my team - not that anyone has joined yet, maybe Cara, Charlie and Judy will join me because I know they are signed up too.  Please leave any size donation if you are able!  More on that later.  :)


Here is a recent picture of Steve & I as a before "hair loss" photo.  It was a champagne shoot because Cathy asked for Champagne pics.... :)  Me and my incredible caregiver!  More on him later too- he has put up with so much so far and there is so much more to come!  



Monday, July 19, 2010

Chemo - Day One

You are all of course not surprised that I had Steve take my picture in the treatment room...  for "posterity" he says to the ladies across the way.  But really I had to share the smile on my face -- after the nurse had a tough time with these incredibly strong VEINS of mine.... and had to re-launch the needle --  (a few times - third time is a charm - right?!) and then ripping that bandage off my slightly hairy arms just was nasty pain.....  not that I am complainer..... :)

Yes - I have the Optimist Creed framed on a shelf (a gift from Stephanie Haberkorn back in my day as a Relay specialist covering 3 counties in Northeast Colorado - I needed it back then too!).  I subscribe to Jon Gordon's Energy Bus emails giving a positive outlook daily and I truly love the Energy Bus and all of Jon's books!  I believe in motivation, positive thinking, visualization and that winning is 70% mental and 30% physical -- in some cases 100% mental!  :)

And yes that maybe a grey hair, not that I had any before I discovered this cancer....  so I am blaming cancer...  but at 46 with no grey hair, no coloring ever in my life -- I am so blessed!  :)



SO here I am - Day 1 of my 4 month trek.....


Me with my Ipad, my blackberry, and my USAT championship shirt  :)  at Doc Mullally's office


Another war wound...  I have a nice picture of the "wound" from the CT guided biopsy too --- from July 4th weekend on the boat.  :)


I can fly!

Crazy as it sounds, I had a dream last night that I could fly! Must be all those sci fi shows we watch, i think i am a Hero! I could power a couch and Steve and Schuyler were with me until we ran out of gas and something broke. I flew away to get gas and Steve worked to fix the couch. I woke up to tell him my dream and started to laugh historically, which quickly turned to tears.

Today is my first day of treatment and I am honestly scared.
Scared of the unknown, because I have always been so tough, you know the type, put on my game face and no crying.... As Arnold says "crying is for babies..."

It's going to be ok, I keep saying and telling myself. If anyone can kick cancer's ass ... I can, right? I love all the notes of strength, confidence and prayer from all my friends and family. I have never faced a serious illness before and here I go. But if I can race Ironman triathlons, run a marathon in 3:05:59, race up mountains for fun and win.... I can beat this and hopefully still running and training the whole time. Just watch.

But it is still the unknown and after reading the descriptions of all the drugs they are pumping into my system and the potential side effects, I realize that running up Mt Washington, even that crazy Sea to Summit where I kayaked 12 and biked 90 and then ran 8 miles up in the clouds to the peak of Mount Washington, is going to be easier than this 4 month "trek". I am an athlete, I am strong, set my goals and achieve them. But I listen to my body and I am not too proud to walk the steepest parts (flashback to Pack Monadnock) because I can still win, finish and feel the sense of accomplishment.

What to wear? I asked Steve this morning what I should wear like I always do ... Working in my home office I don't get out much... Ha ha! So I decided that every treatment I am going to wear a race tech tshirt that I am proud of to show how strong I am. I will try to come back and link to the race from my other blog so you can all read about that experience too, it may even motivate you! Today's tshirt is from the 2007 USAT Age Group National Championship -USA Triathlon . Steve and traveled to Oregon and combined some wine tasting in the Willamette Valley. I remember. The shirt is also a beautiful red color so I stand out and one added benefit is it covers my sunburn from yesterday- don't want to send the wrong message :)



The nurses are great - the way they rally when one patient next to me had a reaction, teamwork at it's best. Everyone is different, how they react to the drugs and the specific "cocktail" they fix, special for you. I feel special to be blessed with the most amazing caregiver, my husband Steve (I need to introduce him that way because the med personnel are not making any assumptions). I feel special and cared for by my friend and colleagues, sending cards, flowers (thank you EI team!) and yes - the ultimate gift for a girl like me.... An Itunes gift card! (thanks Naomi -you rock!).

Sitting here armed for the day with my Ipad, Itouch, Ipod nano and my work PC (if I am feeling motivated). :). Yes we have stock in Apple... A happy Mac family!

Still feeling normal - still have my long hair - it's all about the attitude... Right?

Sunday, July 18, 2010

Click!

The one thing we have realized in going through this experience is that to be comfortable and matching with your physician can be so important for your psyche and ultimate health.  We were recommended to and got a immediate response for a doctor's visit with Dr. Sean Mullally.  

I am pretty proud of how organized I have been collecting all my records and getting copies of my scans.  When we talked to Dr. Mullally on the phone we let him know that we had all the notes from Dr. Barnes & our scans.  I think he was impressed.  Then when I showed up with my notebook and his copies for our visit, that topped it!  :)  We were on the right path and were so happy right from the start in his office.  

We waited in the room for the doctor --- got my weight & height checked.... same - same (except I think I am shrinking!  I swear I was closer to 5'7 when I started!)  :)
A little humor right from the start - Dr. Mullally says - "All new patients get the deluxe room, we are moving you...." and we laugh....  I respond - "That's me, always in for an upgrade - "  To a nice bright exam room with windows and some nice landscape photography that I of course had to check out....  :)

He comes in introduces himself (the guy stands about 7 feet tall - ok maybe an exaggeration, but he definitely is an athletic tall guy.... )  and we share our info with him...  
Then he says...
"Can we not talk about Lymphoma for a while?"  


Then he asks Steve and he starts talking about coaching, racing and how we missed Mt. Hood ski camp.....  turns out that Dr. Mullally is a ski racer and raced with AJ Kitt. He and Steve talked more about skiing, ski racing, skis....  it was really great to have that connection.  VERY cool. 
Click!  Yes this was our doctor.  A great match indeed.  He understands the athlete psyche and can totally relate to us on many levels.  

Then we talked more about me --- what I do -- it started with patrolling at Killington and then the American Red Cross, then the American Cancer Society -- and I shared with him my passion for my "job" - the work I do with the Society, the 15 years of raising funds to fight cancer....  although we weren't supposed to talk about cancer right then..... it is and has been my life.  I am so passionate about what I do -- it truly came out when I was talking to him.  

So then we talked about my lymphoma, how he has been working with MGH and clinical trials in the Berkshires and then on to what was next, treatment.  He made sure we had all the information we needed....  and we came with questions so we got ALL our answers.  

We are ready for treatment.  Starting Monday.  4 months.  6 cycles of 3 weeks.  
Monday - Treatment
Cycles 2,4 and 6 include a visit to Boston MGH 
2 repeat PET CT scans to see that the cancer is gone.

I will lose my hair - Steve thinks that is going to be the next hard part.  They say within 2 weeks it will be gone, so we need to prepare.  Getting a consult from the Pink Petal Boutique and a wig?  Hats?  Scarves?  Wow - just crazy. 
 I worry a little, more about Schuyler's reaction.  I told him this morning the "plan" because he is gone for 2 weeks and I am a little worried that he will be scared when he sees me with no hair. So I need to do this right.  He has been so strong and smart and really seems to be handling it well.  Here is a fragment of our conversation.... 

"Mommy is going to lose her hair"
"No!  You will be ugly!" he says..... 
"No - mommy won't be ugly, it will be ok, I can wear a wig and maybe I can borrow one of your hats?"
"Ok - you can....  "
"Are you worried about me?  Please always know you can ask me questions, I know you must be scared, but mommy will be ok, this is a cancer that will be cured, the doctors can kill this cancer and I need all your love"  

There is more to come on this too --- he is so amazing and strong and has such a great support system of family and friends too.  

So here we go -- tomorrow is the day....  2 days in the doctors and then the side effects begin.  Pretty  scary for someone who doesn't even take aspirin and only occasional Tylenol.  Just not a drug person....  hate to mask the pain... but for some reason I think this fight needs drugs. 





Picture below is our beautiful family on Christmas Day 2009








Saturday, July 17, 2010

Answers

Sorry it has been a while since I have updated this blog - each day seems to be waiting for the phone to ring, talking to the insurance, working with my PCP (Primary care Doctor) and office to get the right notes, referrals and paperwork to the insurance, talking to the oncologist office to fill the gaps and working with Dr. Barnes as we anxiously awaited the results of the bone marrow biopsy and then ultimately the slides of my original CT biopsy that had been shipped to Vermont and eventually made its way to Mass General pathology.   As you can imagine working with 2 different hospitals, and 3 doctors has been quite the juggle.  All so worth it in the end - the RIGHT diagnosis to start treatment.


Bone Marrow biopsy results!
The bone marrow biopsy results came in and Dr. Barnes called us first thing on Monday letting us know that there was lymphoma in the spine and bone and the diagnosis didn't match the original pathology report.  He talked about the other possibilities and we were now up to 5 different types of lymphoma - including Berketts (?) and  a type of Hodgkins Lymphoma.  Although he reassured us that the prognosis was the same, treatment would be different for each.  When he gave us those results the slides had not reached MGH and he recommended that if there is a variance we would need another biopsy to be conclusive.

Another biopsy?
If possible we could get the biopsy at MGH, but if it can be done locally and shipped out specifically the way they need it for slides to be made we could have it done here.  We made calls to pathology at Cooley Dickinson to understand their process and also to the insurance to find out what was "covered".
So we scheduled a surgical biopsy at Cooley Dickinson - with Dr. Marvelli - who has been so flexible with his schedule to get us in very quickly each time we have called.  Again, we are so blessed.  Sometimes it scares me knowing they all have seen my CT biopsy and  scans that they know how fast this "thing" is growing inside of me...

Insurance craziness...
In the meantime we have been stressed about tests done "out of plan" that may cost us "out of pocket".... Thinking that notes may have been sent to help to get those tests at MGH approved, we still had not received word.  The oncologist office gave us the name of the case worker at HNE and we made the call to talk through what is going on currently with all of my tests, visits, and eventual treatment.  Joyce was so great - we talked and she let us know what we still needed and then referred us to the case nurse.  Ann was another great person to talk to putting us at ease with the stress of not knowing the system and what to do moving forward for referrals and more.  She recommended we talk to the oncologist to get the notes for the out of plan tests and hopefully they will be approved if they were needed.

The phone call
After we called Cooley Dickinson pathology to track where the slides were en route to MGH - we found out they had been sent.  Then we got the call that they had been received and were being reviewed.
It was a full day of waiting for the call --- MGH pathology had received the slides and Dr. Barnes was working to get the results for us.  We talked to him a couple times and let him know we have the surgical biopsy on the books for Thursday.  When he said we might not have the results until Thursday --- well... we pushed again --- wanting the results.  Before long we got another call from Dr. Barnes.  I had encouraged Steve to go to the gym and was able to 3 way him into the call with Dr. Barnes (gotta love technology).

Bottom Line
The best part of talking to Dr. Barnes is that he is so professional, gets right to the point, shares the facts, asks if we have any questions, gives us some action and is extremely clear!  He shared his notes from our visit and the call so rather than taking this from my notes (that I so diligently took during the call)  - I can take it from his.

.... surprisingly her bone marrow biopsy shows nodular lymphocyte predominant Hodgkin lymphoma.  NLPHL is a rare disease (5% of all HL) that normally presents in young men as limited stage disease.  Stage IV disease an extremely rare event in this disease.  However 5-10 % of patients with NLPHL will transform into DLBCL. (Diffuse Large B Cell Lymphoma).  It appears this is the case for Nancy.

Treatment:
No surgical biopsy is needed as the treatment target is DLBCL and because of the CNS relapse risk there is additional treatment needed recommended to have at MGH.

Doctors like to speak in acronyms and treatment for cancer has a long list!
My treatment will be RCHOP (C is for Chemo)
6 cycles of RCHOP with  repeat PET scans after 3 and 6 with Methotrexate on day 15 of cycles 2,4,6
It will be 4 months of office visits, chemo and trips to Boston for treatment and follow up.

Good news -- Bad News --- Good news
So it's curable, treatable and the target DLBCL (common) a cancer that is treated often and can be easily done locally where I can sleep in my own bed and not have to make the 4 hour round trip drive to Boston.  Having the added complication of my cancer originating as NLPHL needs to be treated in Boston so they can get blood tests results timely and I am able to do this as an outpatient and not sleep in   the hospital.  (Not sure I would like the beds - I am more of a Marriott girl...  and where would Steve sleep?  I think we are staying at the Marriott)  :(  So we go to Boston and they can check up on me and I can say hi to Dr. Barnes, Sophie and Chad (his support guy - more on Chad later).

In the beginning it was all so scary I really didn't know if I was going to live or die -- talking to the best doctors in the world (I have now ranked them personally!) - Dr. Len, Dr. Barnes & Dr. Mullen--- has put my mind and psyche at ease.

Yes - I am strong - I will beat this thing, harder than anyone!  Watch, wait and see....



Mom sent me flowers right at the beginning of all this craziness.  I love my family and my friends and colleagues so much!  Everyone has been so wonderful --- I am so blessed.    I have been participating in this online workshop on my other blog - Mountain of Dreams - and this is a picture of the flowers with my expression of my biggest strengths and weakness.  It truly has come out in this experience!  

Our family sends our love and appreciation to all of you.  I have been keeping this off my "wall" on Facebook, but I have been able to get this news out and share the blog with many.  Please leave a comment if you stop by!  I have received so many notes of love, support and care and offers to help it has been incredible.  I have kept EVERY ONE of them!   And I just got another vase of flowers from the ACS Employer Initiative team yesterday...  so very sweet that I am surrounded with such love and support!  I have the best support network anyone could ever dream of.

Thank you


More later.... there is definitely more to tell ---