Saturday, October 30, 2010

Ahhh, the 6 1/2 Hour Spirit Renewal

Thursday October 28th
Yesterday was one of those days.  Although I feel I have way too many of "those days" there are some that just take the cake and nearly push me to the edge of insanity....or at least push me a touch closer to the eventual 'big breakdown' I foresee in my future at the rate we've been going the past year.  Having William home on Vancomycin infusions every 8 hours around the clock, 2-3 pumps constantly attached to his active, little body all day, trying to interpret William's every change in behavior to monitor for a possible recurrence of the infection, dealing with the repeat error offenders of our 3 homecare companies, attempting to be prepared for Halloween and Nicholas' birthday coming up next week and just trying to manage a busy household is really taking its toll, to say the least.  I'm still struggling to find time to transition the boys' seasonal clothes - yeah, we still have closets full of summer clothes and neither boy has a winter coat!

Yesterday afternoon, after hours of numerous frustrating phone calls between doctors, vendors, multiple nurses, many poop explosions resulting in 3 complete clothing changes for William by 9am...the day was not looking promising.  To top it off, I received a Caring Bridge update for a little 8 1/2 year old boy I've been following since meeting him and his mother at Memorial Sloan-Kettering.  He's been battling Neuroblastoma since he was three.  The past many months have been very difficult for him, including a recurrence and complications through treatment.  Well, he passed away on Tuesday.  It was all very sudden - he went from what appeared to be a hiccup in the road to entering a coma to receiving his angel wings just two months after starting the third grade.  Despite missing a few posts over the past week about this little trooper, to see the words, "Vancomycin" as one of the medications he was being treated with somehow made the death of this little warrior even more traumatic for me.  I don't know why he was on this strong antibiotic, perhaps as a precaution or even perhaps for the same line infection William is dealing with now....but god, no matter what the reason, it makes the gravity of William's situation all the more real for me.

Basically, this was the end for me.  Once again, its the realization that things can change in the blink of an eye.  And here I am, struggling to make it through my morning routine with just two kids to take care could be way worse....but still, it feels so difficult right now.

So, at nearly my wits end, I told Fred I needed a break.  It's hard to admit and I feel a bit weak admitting it, but yes, I needed a break!  Let's face it, I've spent 29 nights in a hospital over a 5 week calendar period.  I've been saying for months I wanted a good massage to help alleviate my aching back, my nearly-frozen left shoulder and just for an uplift for my spirit. 

Well, Thursday was my day....a quiet drive in the car all the way to Skaneateles, almost 6 1/2 hours at Mirbeau Spa, a delectable lunch at a table set for one and a deep-healing hot stone massage.

Just after checking in, I changed into my luxurious white plush robe when I met a very chatty, upbeat, tiny blond woman with a strong southern accent.  I was standing near the sauna and she asked if I was going in.  I said, "Gee, I've never been in one."  She went into a small dissertation on the benefits of they make you sweat out toxins from the inside out, how great it is for the skin and even superb for cellulite.  Well, how could I pass down all those healing claims!  I joined her and our conversation continued inside the heat box. She asked me if I was there with anyone and I said, "Nope, just me....a day alone!  The kids are home with their daddy."  She began talking, only like a southern woman can.... telling me of her past three years as a single mom, the trials and tribulations with her teenage son and pre-teen daughter...and on and on. 

She referred to her 14-year-old son as once having a terrible "conduct disorder."  She attributed this to his many disappointments surrounding his biological father and his step-father's abandonment. She told me that things finally improved between her and her son when she bucked up and took on the tough love approach.  She explained how she sat him down and said, "Listen, I know your life has already had a lot of disappointment...we can't change that....we can't control that.... but you have to understand, some kids have it way worse....some have parents who abuse them, who don't have food to eat or a nice house to live in...and some kids are really sick, some even have cancer and are facing death."

The words just flowed off her lips. 

My heart just sank.

On one hand, I seemed to immediately think that our meeting was meant to happen.  This woman who shared she was in her mid-thirties, seemed wise beyond her years...and it was like she had a message to bring directly to me in this steaming hot sauna....but on the other hand, there I was, frozen stiff with not knowing how to respond.  I was almost pissed too, since she seemed to be ruining the beginning of my day at the spa!  How dare she!!!  I started to think, should I even share that my son has cancer?  How terrible was she going to feel?  Would I ruin her day at the spa...was that even worth it?

So, after her verbal autobiography, she asked me, "So how old are your kids?"  I replied, "My oldest will be four a week from today and my youngest just turned 17 months."  I paused, and then said, "Our world has been turned upside down for the past youngest was diagnosed with cancer last December when he was six months old."

I wasn't watching her as the words flowed off my lips, but I could tell her heart sank.  I said, "Yes, just like you told your son, the child with cancer is some people's reality....its my reality."

We proceeded to have a very fulfilling conversation on life-changing events, the ups and downs of marriage and how to maintain resiliency despite everything life throws at us....all while sweating off our behinds (and hopefully a little bit of cellulite).  I do think we were meant to meet each other.  She had many messages to bring to me and if anything, I now gave her the first-hand reality of yes, there are children dealing with cancer everyday.

After my day away from all the stresses of home, I've tried to remind myself of who I am.  I do not pretend to be someone I am not....I am me....and I am doing the best I can given the situation and the skills I possess. I might not be proud of some of the things in my past, my moments of weakness and those times when my spirit seems to be quavering.... but I’m proud of who I am overall.  I'm trying to forgive myself for my mistakes and take the gift of each new day as that....a gift for another day, another chance to be better....and to keep on moving forward through all this.

~ my spa memories ~

The Mexican lunch platter   
Hummingbird Cake with freshly whipped cream
ahhhh, thank you hot stones & Jennifer

Saturday, October 9, 2010

The Climber

~ he knows he shouldn't be climbing ~

but its so much fun!

One Hot Tamale

After going into great detail explaining to the nurse practitioner William's extensive history of not orally feeding and being dependent on all IV nutrition, hydration and medications for the past 7 months, William decided to take things into his reigns once again.  Trying to pass time as we waited for our appointment with Dr. Kushner, Grammy pulled out a snack of Hot Tamales.

Oh yes, William shares Mommy's love for hot cinnamon! He insisted on holding one piece of candy. He carefully brought it to his lips, eventually stuck out his tongue to touch it....and before we knew it, William was double-fisted with Hot Tamales, popping them in and out of his mouth!

He was in his glory....that is until he decided he had enough. A little fussing turned into William's frustrated squeals.  As I was wiping off the sticky red mess, I began to realize not all of the 'red' was rubbing off!

As it turned out, William had a reaction to the Hot Tamales....literally it made a red, hot, raised splotch encircling the greater portion of his face!  Grammy kept touching his face, very officially monitoring the elevating heat.  Finally, she said, "He needs a dose of Benadryl....this is bad!"

Let's just say the NP was rather shocked when she came running out to the day clinic to hear the story of the boy who doesn't eat food, only Hot Tamales!
Truly, the pictures don't pay the situation justice, but are good memories!

Friday, October 8, 2010

Scan Day 1: MRI

September 13, 2010
After a late night of settling in at RMDH, we were up bright and early Monday morning to be at Memorial Sloan-Kettering for 7:30am. William had labs drawn, an exam and update with Echee, the nurse practitioner and then we were off for William's abdominal MRI.  Since our last visit, MSKCC opened a beautiful new interventional radiology suite.  We had a great room overlooking the playground across the street from the hospital.
As always, I went back to the scan room while they put William under general anesthesia.  I had to get into a fashionable bunny suit.  William thought the whole thing was silly...
With each additional doctor visit, procedure and hospitalization, William seems to be at a different developmental milestone.  This brings about new hurdles and considerations as to his reaction to the necessary procedures.  At this point, William is clearly aware that something is about to happen to him.  He is definitely a lot more scared and defensive of hospitals and staff these days.  It has been tough to wittiness and see how much more aware of everything he has become.

~ some much-needed cuddles before his scan ~
As I left William in the MRI scanner, the technician assured me I would be called from the main waiting room in about 45 minutes to meet William in recovery.  After an hour, I was becoming antsy.  Suddenly, Grammy and I started to hear the all too familiar sound of a crying baby off in the distance.  The sound became louder and louder...and I said to Grammy, "gosh, that sounds like William."  Just as the words came out of my mouth, the door suddenly swung open.  It was like the entire packed waiting room all watched the nurse, holding my diaper-clad screaming William (who was doing his best to squirm out of the blanket he was wrapped in) merely plop William in my arms.  She quickly assured me he did great through the test and just like that, she was off like a flash.  We call that Sloan's infamous "drop off your sack of potatoes and run" technique.   They do it all the time....apparently even in their new plush waiting room.
Out of pure embarrassment, I couldn't make even more of a scene.  We just let William sleep for a good 45-minutes on me before we attempted dressing him (in the middle of the packed waiting room!).

Tuesday, October 5, 2010

Off in a Jet

September 12, 2010

Its hard to believe 3 months have passed already since William's last routine scans.  The approach of these scans seemed even more stressful than previous because of their timing.  After some problems (shall we say) with our scans in June at Upstate Hospital, we were firm on returning to Memorial Sloan-Kettering for future scans.  Technically, William was due for scans in mid-September.  I had originally requested the scans be done the last week in September, since my father would be retired by then (and available to travel with William and I) and it would have provided adequate time for William to recover from his gastric surgery scheduled for mid-September.  Well, that idea was squashed by Dr. Modak (oncologist from Memorial) because it would have been too long delayed....yeah, kind of like a slap in the face to remind you of the reality of just how dangerous this disease really is.

Despite my many phone call efforts between Memorial and the two doctors involved in William's gastric surgery in Syracuse, our final plans ended with scans in NYC for September 13th, 14th, 15th and surgery at Upstate Hospital in Syracuse on September 16th....far from optimal, but it was just how it was going to be.  Just another example of how we are not in control of anything when dealing with this disease.

Understandably, I had a lot of anxiety in the mere traveling logistics to pull this off.  Let's face it, William is not what I'd describe as a flexible traveler....examine the facts:
he rarely sleeps in the car,
he has very strong lungs that love to be heard when he is not happy
heck, he has yet to even sleep through a night with all the familiarity of his home comforts
....and he requires A LOT of supplies for his daily care needs. 
Yes, the anxiety of this traveling experience was high, to say the least.

Our Neuroblastoma friends, the Williams Family, had tipped us off to the Corporate Angel Network. The Network arranges free air transportation for cancer patients traveling to treatment using the empty seats on corporate jets.  I had a fabulous experience working with Corporate Angels.  They were very accommodating to help us make round-trip arrangements to fly to NYC - a flight of 47 minutes in the air, as opposed to an average of 8 long hours in the car. 

AND, William got to experience his first flight in the process!

As we waited for our corporate flying companions, William enjoyed gnawing on a peanut butter chew.

~ one for each hand ~
The boys checked out our wings...its a guy thing!

It's always hard to say goodbye to Daddy and Nicholas.  They were staying home to maintain Nicholas' pre-school routine.

William did well through the taxing and take-off of our flight.  I think the noise bothered him the most.  He was definitely curious as to what was happening out the window.  I just love this expression!
We flew just over the clouds, so picturesque.
Our gracious corporate angel sponsor for the flight to Farmingdale was the Michael Goldberg family, owners of Raymour and Flanagan's.  We flew with Mike and his daughter, Shera.  Shera had a bag she kept with her at her seat and Mike's "luggage" is on the seat.  The rest is ours...(gulp)

William did well for most of the trip.  About half way into the fight, Grammy and I had to turn into creative entertainers with our limited resources.  To top it off, William clearly had a poop about 20 minutes into the flight, as smelled by all.  When Mom and I realized this, we both shared the look of smell embarrassment.
Our entertaining worked well for about 35 minutes, then I ended up getting William out of his carseat.  He snuggled right in, as if he just needed a little TLC on his first flight.
We were greeted in Farmingdale with a beautiful executive terminal and a luxurious bathroom, stocked with every commodity you could want (and jugs of Listerine!).  Thankfully, there was a changing table....we really needed it!

A nauseating 90-minute van ride later, we made it to the Ronald McDonald House on East 73rd Street....with our stuff....


No, this is not a word that belongs only to the urban dictionary.  Anyone who has been personally affected by cancer knows exactly what this word means....

“Scanxiety”:  the emotional distress and feelings of anxiety and fear that consume you whenever it is time to have routine scans to check for cancer growth progression.

Once you've heard the words that your loved one has cancer, it is always on your mind....'gosh, when is it going to come back? Are there symptoms of a recurrence I'm missing?"  I catch myself over-analyzing William's behaviors "Gee, William has been falling a lot - what if the neuroblastoma has spread to his brain?  It seems like his hip pops a lot...what could that mean?  He's had a difficult time settling to sleep for the past 2 weeks....oh no....its back!" and on and on.

Scanxiety is always on your mind to some degree, sneaking into your dreams and everyday thoughts like an unwanted infestation.  But it becomes a whole new reality when you get the call with your scan schedule from the hospital.  Then, when you turn your calendar to that scan month, it becomes even more of a reality. 

It's certainly difficult to address these fears. Part of you wants to remain optimistic and carry the torch of "We've beaten cancer!" whereas another part of you is immobilized in fear and another part wants to remain in blissful denial.  Other times, I almost feel a sense of survivor's guilt, especially after you meet more and more families who have lost or are loosing their child to the same disease my baby is beating.

To stop my mind from doing this repeating circular thinking, I try to rationalize and ask myself the bottom line: “Do I really believe I can do anything about whatever the scans will show?”   As difficult as it is to admit, I know I have no control over the test results....or even what our future foresees through William's long-term health.   It's the utmost feeling of matter how well I try to take care of him, how much I would sacrifice to make him better or the ends of the earth I'd travel to seek the best doctors and treatment possible....we have no control in the matter.

Admitting helplessness is certainly not easy to do, especially for people like me who seek to be in control and to plan my future... unfortunately, it is a reality of the whole cancer experience.

The rational side of me knows that spending endless hours in high anxiety is merely robing me of enjoying the most precious commodity we possibly have - time.   I do the best I can to remind myself to stay living in the present moment...not allowing myself to feel hurt from the past or fear what the future will bring. 

So, I tell my scanxiety - those scans will be what they are going to be...
 no matter what...