My journey - battling lymphoma

Recently I celebrated my 46th birthday. I love celebrating birthdays! Then I participated as a co-captain for our local "Quabog" Relay For Life and the Pack 57 Rocks! Cub Scout Team. This was the time frame that I had discovered an uneasiness in my stomach and growth in my spleen and stomach. After weeks of monitoring, my husband Steve took me to the doctor who felt the lumps and ordered a CT scan. The CT scan showed a massive area, my spleen enlarged to twice its size and an additional growth lower in my stomach. Next was the localized CT guided biopsy and subsequent PET scan. The biopsy showed positive for lymphoma and most likely Diffuse Large B-cell Lymphoma.

This is my online journal sharing my experience through battling this cancer that has abruptly entered my life for no apparent reason. The story is documented here if you want to start from the beginning, you can check the archives on the side bar.

As a top competitive master athlete this year winning my age group at the Marine Corps Marathon and placing 3rd in the New England Trail Running Championship I have been truly excited with my results of late and am a truly driven athlete. Driven by goals.... my goal right now.... to beat this "thing"!

Tuesday, July 20, 2010

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"...
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...
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!  


joy.ginsburg said...

Just my two cents on hair loss. I don't know first hand but I went through it with my mom (who, by the way always had a fairly short hair cut). When her hair started coming out, it got all over her face, it came out in the shower, on her pillow, etc. Even though it didn't look noticable, I convinced her to get it shaved instead of seeing it on her pillow every morning.

I took her to the beauty shop and we decided to have them shave it down to less than an inch... that way, she still had a little hair (while it lasted) but it wasn't too annoying when it came out.

She got a beautiful wig and looked really nice in it -- but around the house and around folks she felt comfortable with, she wore her beloved Cubs hat and honestly, she looked great in it. It was one of those baseball hats that was really fitted to her head and she really looked wonderful in it.

Whatever you choose to do ... you will always be beautiful. Hope my mom's experience helps you decide what is right for you!

You're doing great! Thinking about you and sending good thoughts your way.

SayJay75 said... sister shaved her head the fist day of treatment...she knew it was going to go so she said why wait and deal with it falling out a little at a time. I would suggest cutting it now for Locks of Love..not sure what their acceptance guidelins are. I will keep my eyes out for some cool hats to send your way! I love that you are blogging this and keeping us all are amazing and an vision of hope and determination that you will kick A$$ in this fight!
Looking forward to seeing you but if things change and you aren't feeling well let me know..I will understand.
Love to you and your family! said...

Got your email on Friday at work. I know you've heard this a million times - "you're the last person I would have thought..." I was so uplifted reading your blog. We're supposed to be making you feel better, not the other way around! Will be keeping you in my thoughts and prayers. You are one strong woman and I think the big C has met its match!