Photo by Rebecca Gould Photography

Wednesday, June 24, 2015

Blogged Too Soon

I have always struggled with the idea that "everything happens for a reason" -- because what about those truly horrible things that defy reason?  Children with cancer?  Acts of terrorism...the unthinkable acts of violence my clients endured as children?  

Then one day, a very wise man (who just happens to be married to my very dear, wise and insightful friend) said that (and I'm not quoting him, as I am sure he was more eloquent than I am about to be) it is up to us to make meaning out of the senseless things that happen in this world.

This idea resonated within me...and I have recalled his words often.

Today, when Susan and I set out for the city, I had her peanut dosing logs and her graduation card and gift with me.  We also had a token of appreciation for the clinical trial staff and those who work in the Clinical Research Unit (CRU).

We dropped my car off for service, picked up a loaner and even though I pulled away from my mechanic's shop later than I had planned, we were making good time.  Fears of being late slipped away, and I got lost in my own thoughts while Susan texted some of her early-riser friends.  I noticed the northbound traffic (headed in the opposite direction) was barely moving, and I offered up a moment of thanks that that's not the direction we were going.

And then my phone rang -- and I recognized instantly that the caller was calling from Ann & Robert H. Lurie Children's Hospital.  Hmmm.  Since I was in a loaner car, my phone was not coupled with my car's hands-free system and in the seconds while I fumbled to answer the call, I wondered...finally deciding that it was a reminder call for one of Susan's post-operative follow-up appointments...

Except, it wasn't.

The minute I heard the clinical trial coordinator's voice, I knew our day wasn't going to be as planned.  I think I heard the apology in her tone.  

She explained -- she had forgotten to have us hold Susan's Zyrtec, and since the final day of the clinical trial required skin testing (which I either did not know or had completely forgotten), we had one of two choices -- go and do the physical examination, breathing tests, blood draw and return the following week for the skin testing or simply reschedule the entire appointment.

I explained the situation to Susan, and offered Susan the two options (thinking -- "control, give her control") and couldn't help but agree with her choice -- reschedule for next week.

At the next exit, I pulled off the highway, and over -- pausing as the world of early-morning commuters swirled around me.  I checked my calendar and confirmed that we could be there the following week (for those keeping track, "Graduation Day" is now Tuesday, June 30, 2015).

I sent a brief text canceling a surprise I had planned for later in the day...
  and I fought tears of disappointment.

I feel the loss keenly, and yet I determined (even before the reality of these losses crystalized in my mind) that if it was not "Graduation Day," I was going to make it a great day.

While I sat by the side of the road, I texted my good friend, Andi, who has manicured and pedicured Susan several times during the clinical trial -- especially last summer, when Susan did not feel well.  I briefly explained...and asked if she had time for an "emergency" pedicure.  She didn't -- but her friend did...

And I moved into damage control mode.

I proposed a pedicure, with book shopping before and sandal shopping after (I know, it would have been better to go sandal shopping before the pedicure, but I had to take the appointments available on short notice).

We were waiting when Half-Price Books opened...

And Susan did some serious damage to the clearance cart, where each of the four books she found were $1 or less...

This was Susan's second pedicure EVER, and she loved it!  

 AND...all day long she kept talking about how well the blue nail polish went with...just about everything (the shoes she was wearing, the pink polish on her fingers, the color of her bedroom)...I am so glad she is so pleased with it!

Susan's blue toenail polish does look nice -- with her pink fingernail polish, her new sandals AND the silver bracelets we have given her at key points in the clinical trial.

As we were driving toward the rink, Susan examined her freshly manicured toes and fingers and checked out her new shoes.  We talked about the order in which she planned to read her new books...and Susan declared that we had filled the morning with "all of my happy and good things."  

As the day wore on, the impact of Susan not graduating crystalized.  I alternated between feeling a nearly crushing disappointment to reminding myself that one more week of living as we already do is...really, nearly nothing.  

Except...for the losses I feel (perhaps) more keenly than Susan 

I am eversothankful that Susan does not know I invited a group of her close friends to join us for ice cream at Baskin Robbins.  She does not know that I scoped out the two different nearby Baskin Robbins locations and picked the one offering more flavors.  She does not know that I made arrangements with the manager for her to try each and every flavor that does not contain nuts (she still has a tree nut allergy, and a mild soy allergy).

I am ever so thankful that Susan does not know that I planned for us to have dinner at Highwood Days, an event she loves that is like a giant community picnic, and a veritable "feast on foot."  Each year, there are numerous vendors with interesting and unique food offerings, and Susan has only ever been able to eat pizza.  I had envisioned a dinner on foot -- wandering with Susan, trying whatever looked good to her.

As the day wore on, my disappointment crystalized around the realities of what could no longer happen (at least not as planned).

I rescheduled Susan's Thursday-morning appointment to have her braces put on (we had agreed to wait until after the clinical trial to start orthodontic treatment, due to the increased risk of an open wound in the mouth, which some feel increases the risk of an adverse reaction during daily dosing).  

I exchanged e-mail with the doctors overseeing the clinical trial about a road trip we intended to take this weekend.  There is a significant stretch of our journey that is isolated, and our destination is remote.  We revisited the wisdom of this trip, and at best, it will be...different than I envisioned.  With the no-new-foods restriction, travel is exceedingly hard.  I can (and will) pack food for Susan as I have always done -- I was just looking forward to greater freedom -- for her, and for me.

I contemplated our dinner reservations for Friday night (Susan's last night as an "only" before her twin siblings return home from camp), at what sounds like an incredible restaurant.  We were planning to enjoy a "tasting menu" -- small portions of a number of unusual offerings.  With the no-new-foods restriction still in place, I cannot see how this is still an option.

As the day wore on, something else happened, too, though -- we had the very beginning of what I hope will be important communication about Susan's treatment once she has completed the clinical trial.  I have new hope that maybe, just maybe, there will be a partnership.  

Intermingled with my disappointment is now hope -- and the feeling that maybe, just maybe, we can make meaning out of this disappointment.

Susan and I took a long walk with our puppies just before she went to bed.  

We talked.

Susan shared her disappointment...
   and we agreed that after having lived with the restrictions necessary to keep her safe given the severity of her peanut allergy for years, and the restrictions that came with the clinical trial for eighteen months, we can do this for one more week...
   and we reflected on how fortunate we are that we have greater freedom to look forward to.

As the day wound down, I reflected on something my dear, wise friend wrote about Susan's clinical trial experience:   "The definition of resiliency:  embarking on a path, expecting one destination, ending up slightly off-course, and making a journey of it all."  As difficult as the clinical trial has been at times, we have learned so much, and grown immeasurably, and I am thankful for every bit of our experience.

As I tucked Susan in, I gave her one more "happy and good thing" -- a miniature orchid.  

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