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"!

Monday, November 22, 2010

A child's perspective - a focus on Schuyler's experience

Ever wonder what it would be like to get cancer and have to share the news with your child?  How scared they would be?  If you were afraid of dying, then how afraid are they going to be and think you are going to die?  Will they share with you that fear, or just fear it?  The fear of dying is so vivid for a child, especially a nine year old that actually understands heaven, where people go and death.  It is truly a scary thing.  I remember the day telling Schuyler when he got back from New Hampshire and being as strong as I could be, so that we could manage his fears and he would feel comfortable talking to us about his trepidations.

It has been a crazy ride for me, this "cancer" thing... but bringing my family along with me has to be even harder to see how they personally deal with it all.  It is amazing how the strong get stronger in the case of my family.  Schuyler has had some ups and downs and really doesn't like to talk too much about my cancer, and just connects with me on so many levels that I am able to tell when it may be "bothering" him.  When I first was diagnosed I shared on the blog his reaction, and we have all stayed strong and confident through treatment and when I am not feeling well.  When I get up in the morning I choose my attitude, read the Optimist Creed, and keep positive.  As the time has gone by I realize it may be hard to tell that I have cancer except for my bald head and pale face.  We ask Schuyler to be strong and think himself well - as we know the positive vibes of your inner self help in the healing process at all levels.

We stay fun and light around the house where Schuyler has been so great to have around me to brighten my day and my overall spirit.  His distraction for me with all his needs and activities has kept me strong.

Here are some of the stories to tell about Schuyler & his experience with "Mommy's Cancer"

"Mommy Baldness"
One night we were sitting on the couch watching TV -  Schuyler puts me in a head hold and says.... "I Love your bald head mommy - it's just like a ball!"   :)  Schuyler LOVES balls - so that surely was the biggest compliment of the day.  He has been so great about me not "wearing hair" and has been known to just "rip" it off my head with no warning.  :)  Guess it doesn't bother him that I am bald!  :)

"Other kids"
He obviously doesn't talk about it much with the other kids and avoids their questions:
Lynne's son Derrick asked me why I wear a cap.... I told him its because I don't have any hair.
Schuyler said "Why did you go and tell him, now he will tell everyone!"
"When kids ask me why you wear a cap I tell them its because your crazy!  Pirate - crazy....  "  :)
I think he likes to keep it our family secret and often asks me if I still have cancer.

"Are you healed yet?"
At the end of my treatment he asks, "Mom  - do you STILL have cancer?"  and I replied "yes, but it is almost 100% gone and we will know that after I go to the hospital and they scan my body to see that the chemo has killed it all - isn't that great!"   - "Yes!" he replies "I just want your hair to grow back!"
As my hair has been growing back he gently pulls my cap off my head and feels the "fuzz"....  "YAY!  Your hair is growing back - it's so FUZZY & soft!"

My energy level has been low at times and my moods, sad and tired have been really tough for me to handle.  I am so blessed that Schuyler has been so resilient, supportive and loving.  He truly gives me strength.

1 comment:

Shelley said...

Just read this, Nancy. Schuyler is just as awesome, as you are! That puts a smile on my face. He doesn't realize it yet, but he will draw on what he's learned over the past 6 months and it will make him a better friend, husband, and dad one day. I truly believe good can come out of any situation, regardless of what it is, and maybe what he learns from this will be one of the biggest blessings of all?