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"!

Sunday, August 1, 2010

I'm SHEDDING!

Each of us has the power to give life meaning, to make our time and our bodies 
and our words into instruments of love and hope.
 - Tom Head


Eek--- so did you ever want to know what it would feel like to lose your hair?  I didn't.  Never even crossed my mind.  And I am still partially in denial that I can go through this without crazy side effects...  and my long hair remains, and I brush it every day.  I love my long hair.  I love to curl it and get all pretty when we go out on "date nights" and when we have company or go out.  Hair is such a huge part of how you feel about yourself and I love going to the hairdresser.  It is actually kind of crazy, how I really searched for a hairdresser here in Western Mass after leaving New Hampshire, because I loved Amber so much.  She made me feel like a queen every time.  I didn't find that here for a while, until I went to Tranquility Day Spa in Florence, MA --- Maria is her name --- she is amazing and I really like going to her for a cut.  I feel like a million bucks!

So back to shedding --- last night it started, long strands of my hair started coming out of my head after my shower.  It is really horrible and sad.  Judy said it could be painful according to others she has talked too.  Well it is.  Psychologically painful that is.  I brush and it comes out, strands at a time...  I kept thinking I need to go to get a hair cut this week and cut 8 inches to be able to send to Pantene Great Lengths program where they make wigs for kids going through chemotherapy.  I would really like to do that --- 8 inches is a lot, but it is just awful to be pulling out long strands of hair and feeling them on my back and picking them up all over.  UGH.  Oakley is infamous for the immense amounts of "hair clouds" of yellow lab hair he leaves all over the house.  We could surely make another dog with all that hair.  Now its me.... my hair..... eeks.

So - off to the hairdresser.  Cheryl Nina said she may be able to help and give me an "emergency cut" --- which is what I need right now.  Hope that wig comes in soon -- otherwise it is going to be a hat if I see any spots.  :(

The other thing that is really bothering me right now is my taste buds.  My mouth feels burnt.  Nothing really tastes that good.  I eat for fuel.  I have lost more than 6 pounds to date since diagnosis.  I can't drink wine or any kind of alcohol (I keep trying and it tastes so horrible and gives me HUGE heartburn and a rotting feeling in my gut).  Sad.  I am such a wino (love good wine, wine tastings and visiting vineyards).   My friends are helping and are having drinks for me.  Comment on your favorite wine if you can!  :)

I can't eat anything with pepper, or anything too hot (coffee has to cool down - but I can still drink coffee).  No red onions or fresh garlic.  ALL of it too spicy.  So - I starve.  Kidding.  I have been drinking protein shakes and bread and a very plain, bland diet.  Boring.  Oh well.  Just thought I would share.  :)

The good thing is that I am still running and running pretty strong (maybe not my best, but not so bad).  I am trying to stay on the Training Peaks plan and ran 18 miles today.  I am a little tired, but boy oh boy it felt great to get it in!  I have put my site out there hoping people will sponsor me and make a donation to ACS for my Determination efforts in Chicago.  The date is 10/10/10 ---- which is Schuyler's birthday -- and really very cool date for the marathon this year.  Kristin, who I mentioned earlier has a 10,000 goal.  Not sure I can do that, but maybe $5000 and that will make my Determination donations in the past 1.5 years up to 10K?  Please sponsor me --- any donation counts and is truly appreciated!  :)

Cara Turano (mentioned earlier) from Boston Determination is going to pace me (she can be with me in the Elite corral --- yes I have an elite number because of my past times in the marathon this year -- very cool) and we are going in costume!  I have asked Laurie, my sister to make us Batgirl and Wonder Woman costumes.  It will be a hoot!  It really keeps me motivated and so happy to run.  I ran 2 towns, 10 streets, and listened to 20 songs....  The bike path was full of active people enjoying the day.  :)

Hope you all are enjoying this weekend!  It is beautiful here.  Get out there and enjoy life!  Every minute counts! Say a prayer for me and my family as well as anyone else you know going through a life changing illness --- it isn't always easy.  God is truly watching over all of us.  Photo below was taken in Northampton.

Thanks for stopping by.  Please leave a note if you can!


(Added this below on Monday morning 8/2) 
On the way home last night (Sunday) - Cheryl Nina from Cheryl Nina Salon was so great to have us stop by so she could cut my hair.  We are close to the family as they are Samantha and Stephen's aunt & uncle - and Schuyler loves to hang out with Austin (11) their son who is an amazing soccer player.  She has the cutest little spot in her home for her special clients, and I felt very special with Steve & Schuyler there as I got my hair cut.  I asked her what 8 inches off would be so I could send the hair to Pantene Great Lengths.  She showed me and then we made the plunge.  

Wow - do I look different.  It is hard to see in these photos, but I haven't had my hair short like this in a very long time.  It has been quite long for more than 3 years.  Steve loves it long.....  Anyway, she gave me a stylish cut, just the way she would like her own hair and I think it looks great - so I am sharing a couple pics here on the blog.  :)  yay!  Now when I shed, it will be short hair and hopefully it won't get snarly and come out in handfuls for a little while longer.  :)

Hope you like it too!

7 comments:

Sasha said...

I think it would be great for you to donate your hair...might have some huge positive psychological vibes for you to know you are still helping others.
Good luck Nancy...keep training and keep being positive. I will have some wine for you when I get of duty tomorrow...hard to pick one favorite because there are sooo many that I like!
Love the steeple pic and as always thank you for bringin us on this journey with you.

Karen said...

We were praying for you in church today! It was beautiful here this weekend, too... It was so nice to be outside for a while without feeling like we might wilt. I'll be happy to help with your wine consumption for now. ;-) I discovered a new, totally fun (not at all fancy wine) a couple of weeks ago. It's called Jam Jar, a sweet shiraz from Australia. It has a cute bottle and is easy to drink. It's not super sweet (like ice wine) but reminds me a little bit of sangria. Great for summer since it's good slightly chilled. I think you'll look adorable with short hair if you go for the emergency cut!

Heather Goss said...

You look gorgeous! Love the short hair, you will get that long hair back before you know it!! Thinking and praying for you!
Heather

Julie said...

Nancy, as much as you love your long hair, I think that I like this look better on you! It really looks great. -Julie

Jane said...

The cut is great and you look beautiful. You were the focus of my prayers at church on Sunday, and every day....with all these loving prayers from your friends and family, and your amazing positive attitude, this will all be a bad memory soon. As you know, I love my wine, too, and will drink an extra glass each night with you in mind.......cold chardonnay these days to beat the heat. Love you! Jane

Becky said...

Hey Nancy
You look fantastic and sound focused and energized! Thought about you as I dropped Hannah off in Lake Placid and saw the Iron Man runners! I am sure I will see you there someday soon! The Miles family says 'Hello' and wishes you the best!
Becky Miles

janvandine said...

Love the haircut. Makes you look younger. Laurie wants to come visit before Becca goes back to school. She will do my calves for me.