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.

The Monster Mash 5K

It was great to be home during Halloween weekend -- and fun to be a part of all of that is happening in this great community that we live in.  I love to run a race on the holidays as the tshirts and festivity of it all just makes me so happy.  SO - in support of the Clapp Memorial Library we headed up to the Common and I put on my Wonder Woman costume, knowing it would fit right in with all the costumes around!   :)

We were so happy to see Trish & Jacob Sorber, friends of ours that we have known since Marin & Eliza were in Schuyler's kindergarten class.  The twins are always so amazing --- I remember the comment Jacob made to me when Schuyler went to the girls birthday party -- "We think Schuyler has replaced Diego!" -- the girls just love Schuyler.  :)  He is such a shy kid and not mixing with all the girls right now - so he kept his distance and refused a photo op.  Oh well.  I got some great photos of all the kids!  Jacob is a cancer survivor and it was great to share my experiences and some how when you talk to others that have experienced what you have gone through in cancer treatment - it truly creates a special bond, one I never would have known before.  For that I am thankful.  I love the velour hippie outfit full of color and Jacob's dyed bluish purple hair.  :)

The kids got their dash in first and the day was so clear and crisp.  Schuyler actually put some speed on his run and it was good to see!  :)  He loves soccer, skiing and all sports --- so great to have an active boy!   I think he is actually looking forward to skiing, and is going up to Vermont with his good friend Aidan next weekend to get that winter excitement brewing!  ;)

Then we lined up for the Monster Mash 5K - a 3.1 mile run around some side streets starting and ending at the Library.  I meet this girl Jill, a triathlete - who everyone was eyeing as she is the fast girl in town.  :)  She was so sweet and it was great to connect once I chatted with her about different athletic events we had done at the same time.  She was in Clearwater at the World's 1/2 Ironman Championship after qualifying at Timberman.  Both races I had done at the same time.  She said she was so happy to finally meet me -- such a great energy to connect with - hopefully we will connect to train when I am feeling better down the road.

Schuyler - not one for impromptu photos :) 

I love the start of races, so exhilarating and full of energy -- everyone sprinting their way and working to get their pace.  I am never very good about hanging in the back, so I push to the front as we round the common, soon to be passed by Jill and one other young girl.  It is such a beautiful area with all the colors still on the leaves it made for such a beautiful run around town. 

Trisha ran with me for a little while and then I had to stop and tie my shoe.  My stomach wasn't feeling so hot and probably from the crash earlier my breathing just wasn't on --- and I really didn't feel like pushing much -- so I eyed the corners of each turn and looked at my Garmin for the mileage and eventual finish.  Steve could tell I wasn't pushing and got some great photos of me floating to the finish.  :) I kept my Chicago Marathon track jacket on the whole way as the weather was definitely a bit chilly for a tank top.   The last part of the race was uphill on Route 181 and the wind was at our face as we ran up the last hill.  Not actually a PR flat course for some you could hear grumbling about the "hill" at the finish.  :)  But me, I love hills - it is definitely an advantage to love hills and love challenges.  Makes you stronger in the end.  :)

It was great to see Steve and get my big hug at the finish -- :)  23 minutes for a 5K - just about a 7 min/mile - not to bad for a jog around town.  Can't wait to feel better so I can push harder.  I have a feeling when I come back from this I will be stronger than ever.  I just feel it.

RCHOP #6 - Enduring it till the end!

I wanted to label this "My last and final treatment cycle" or "The Light at the end of the Tunnel" or "The Finish Line that I have been waiting for..." or "it's OVER now"!  But the weirdness of it all surrounds me, with the accumulation of all the chemo inside of me, each round has been more difficult to take, and it isn't all about the treatment days, but the endurance of all the symptoms that follow.  I have some cancer survivor friends that have been prepping me for all of this, but I really just keep my eye on the pie, the last treatment, the upcoming hopefully CLEAN PET scan and my hair growing back, my stamina and my drive returning and more of that old "Nancy" that I miss.

I anticipated the last treatment as one that would be tough and really didn't want a self fullfilling prophecy, but knew it wouldn't be easy.  RCHOP 5 was tough enough, but this one - I just had a feeling.  I have been pushing myself to work as much as possible, keeping up on the important stuff and proud to be doing all that I can in this state of healing.  This week I decided I really need to get myself back on track and start the healing process.


We had our routine down as I said in RCHOP 5 and as usual we were a little late getting there for our chat with the Doc and intake nurse.  I decided to get on the scale backwards and not look at the number, knowing all that Halloween candy weight wouldn't make me happy.  :)  We joked and the nurse smiles as she asks me her usual "So - how are you feeling"?   I take the chance to tell her all my aches and pains and falls and stuff that she really probably doesn't need to know, but it seems like a great time to list them off.  :)
1. My chest is still aching from a fall in the trails before the 5K I ran on Saturday.
2. My toes are still black and blue and my right toe nail may fall off - still issues from the Chi Marathon
3. I have the sniffles - something Schuyler must have brought home
4. Feeling bloated and a little exhausted
But otherwise GREAT!  :)  She laughs and takes notes, probably thinking  I am crazy.  :)

The doc comes in and asks the same question and I get to tell him the fun story of how I body slammed the ground after tripping in the trail, probably because I can't feel my toes and pick up my feet as well as I used to? (OR at least that can be my excuse for now)  -- My friend said that if it doesn't get better I probably should get it checked out - so I told her that I was seeing the Doc and maybe he give me a 2 for 1 on the next check up.  He laughs.... and smiles...  and is so excited to share that all my test results are normal and good.  No anemia, blood levels are good and everything is in order!  Yay!  We really think that the exercise and good healthy food, prayers and healing surroundings really pay off and are so happy.  So after a bunch of ski talk, gear talk and getting excited for winter, we head to the CHAIR.  :)
Photo of Steve, me & Doc Mullally  (actually taken after the "high Five finish" as we were getting ready to leave.

That familiar chair (and there is an extra one for Steve) - oh so comfy with its pillow and blanket waiting (I know that I am napping later, so this is all good).  I load up my side tables with my ITouch, IPad and Mac -- get ready to do some Farming and then settle in for my nap. Those of you that don't follow me on Facebook, Farming has been my mindless distraction to get me through some of this and I must say I have an incredible Farm and Winery too!
 :)  Love the photo below --- with my new Smartwool boot/slippers.  :)

My inspirational jacket of the day was my Chicago Marathon 2008 jacket which reminded me of the HEAT wave I endured and still ran a 3:26 marathon (even though I truly complained at the end - hoping to run a 3:10 that day!) Steve still remembers me blaming him that I didn't get enough training in that marathon -- until we found out that they cancelled the race and asked all the runners to walk back after a certain point.  Crazy marathon experience that was!  We had our down jackets that morning as it was in the 40's at home when we left the house.  It was nice to have my down jacket with me - kind of like having a sleeping bag - definitely a comforting feeling.  Love my Marmot down jacket!

 The cheery nurse comes over to "stick" an d"juice" me and I get to meet the new girl too -- a long time nurse now in Oncology (when she got to see my blog she was a little stunned with it all - made me feel like the Wonder Woman that I am) --- but I am strong, I endured this whole thing, running the whole way.  :)  Once loaded up the Benedryl drip started and I was out --- They RCHO the chemo routine inside of me and I slept through most all of it.  Woke up around 12:30 starving!  We got 2 sandwiches at the Roadhouse and I ate that second one for lunch.  Yummy.

The end of the session I got some photos to share as I love to include photos with these posts.  Got one with the Doc this time.  He has been so amazing.  We feel so blessed to have found him and this office of amazing caregivers.  A comforting, relaxing, healing place to be treated.  I introduced myself to the other patient that was there and talked to her a little before leaving and wished her luck with her treatments.  Then to the back where the nurses mix the drugs -- with the kitchen in the back too.  "The Control Center" :)  It's like the backroom  or waitress station where it all happens.  :)  They are the greatest too.  The one nurse gives me a hug as I shared the print out of the RCHOP 5 post where I featured her photo -- She says "You have endured this like no one else - we are so proud of you" --- tears welled up in my eyes.  Who knew I would be sad saying goodbye?  I can't say enough about how great they were all to me at that office and how comforting it was to know I was getting rid of this cancer in my body --- the strongest way I know how.

We said goodbye, knowing we would be back the next day and later again to get checked more, but this time - I know that I won't be getting that "poison" in my body and it is going to be all about a healthier me in the future.  Cancer Free Me

SO the big Shot that was on Tuesday - used to give me chills and pain is now under control with Aleve and rest.
The Prednisone is totally no fun - but I know it is only 5 days of craziness, mood swings, retaining water, a little nausea, heartburn, etc...  But when this week is done --- it's done.  My hair is even starting to grow back a little and that has truly put a smile on my face.

Cheers to all of you and your sweet notes on facebook and daily mile and comments here on the blog.  I really appreciate all of your loving support and prayers.  Like I said - we are truly blessed to have such an incredible support group all across the country.  Thank you!    Please leave a comment if you stop by!  I love getting notes and comments here are read and posted!