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.

Tshirt Sayings of Empowerment & Strength

Thanks for stopping by and checking in.... I am doing much better this morning, last night was rough.  Schuyler had a tough reaction to my wig and lack of hair.  He really wanted me to hang on to that short tuff of hair (that was FALLING out and was too much for me to manage).  We calmed him down, let him cried, cried with him a little and talked to him about when the hair will come back and that we can get a wig that will help mommy look like mommy again. He wasn't so keen on the blonde wig.  But I explained to him it could be so much worse, I could feel really sick.  I could be incapacitated and not be able to do the things I love to do.  But it is tough not having hair, I don't want to look "sick" - I want to be normal.  Having no hair is not normal.  But --- the new "hair" is fun in its own way --- I just need to get used to it.  I am ordering some beanies from Road Runner sports that will help being able to wear hats  - - and hopefully bring a little more normalcy to the house.  Be strong - it won't be long....  I will have hair again.  I just need a little strength sometimes, and prayers, and need to cry, just to get it out......  and keep healing.

Back to something fun....

Here is another post from the Pink Petal and there will be a few more to come.... but this is dedicated to all the tshirts that Donna has on sale at the Pink Petal.  I smiled, felt empowered, felt warmth and felt strong as I looked at all she had to offer.  I love to take photos of fun and empowering shirts on my other blog,(LINK HERE TO Tshirt sayings on Mountain of Dreams) and thought how cool it would be to share with you all these shirts and what they have to say about fighting cancer and have some fun with it!  A little humor goes a LONG way.  These shirts have been worn at senior centers, shopping malls, Relay For Life events and just give the battle a whole new look!

Mostly these are for females & breast cancer survivors, but they have such a strong message!  Please leave a comment and tell me which one is YOUR favorite?  :)

Enjoy!  :)  And smile!  :)

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?"  

We shared my background, primarily what I like to talk about is my athletics, achievements, my PR's, my ironmans, my marathons, my mountain running championships, my psycho runner attitude.....  

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

Talking to Schuyler...

You ask - have we told Schuyler?  Yes - we told him yesterday.  We made the decision to cancel our planned ski camp trip to Mt. Hood (Dave Gregory's Peak Performance Ski Camp).  As we were working on arrangements for Schuyler to spend time with friends we connected with the Feliciano's, from Stamford CT and Aidan is one of Schuyler's best friends (he ski's with Aidan as a J5) we really needed to break the news and help him start the coping process along with us.

After soccer camp we picked him up at UMASS and on the way home Steve encourages me....  you need to tell Schuyler.  SO it went sort of like this (Not sure I can get this word for word, but it is worth repeating so I will try)

ME: "Schuyler - Mommy's stomach hasn't been feeling very well lately" 

SCHUYLER:  "Are you ok Mommy?"

ME:  Yes - I am ok, but do you know what cancer is Schuyler?"

SCHUYLER: "YES! (he exclaims) - you work HARD to fight it!"  with a smile jabbing his fist in the air...  "I know that and told the people at the Relay and got extra cupcakes because you fight so hard!"  :) 

ME:  (smiling) - "Yes Schuyler - that's right I fight cancer every day at my work.....  well now the doctors say I have cancer in my stomach.  It's called Lymphoma.  

SCHUYLER:  "Oh mommy - are you ok?   Am I sick too?" 

ME:  "No - you are fine Schuyler - the body is made up of good cells and you have all good cells.  Cancer is when your body for some reason makes bad cells - that is what is happening to me.  But I will be ok - the doctors say that this cancer is curable.  We are very lucky."  

SCHUYLER:  (Sigh of relief) Oh good.  I just want us all to be healthy and happy. 

Then as per usual he was back at his DS and asking for ice cream (jokingly).  :)

I remember when I first heard I had cancer, not knowing the success rate of treatment or any details and the sadness I felt inside thinking there was this possibility I wouldn't be able to watch my son grow up.  I celebrate him every day - love every moment with him - and the joy of life - celebration of the day - I truly thank the Lord for my blessings and the chance to fight this "thing".  I know we will have many more conversations while I am going through chemo, losing my hair, and the craziness of the treatments, but we have such great faith and love in our family.....   we can and will get through this together.

Schuyler and I at the year end Pack 57 picnic early June 2010