Photo by Rebecca Gould Photography

Tuesday, September 23, 2014

"First" Updose

I believe in the power of positive self-talk.

I was a competitive swimmer throughout high school and college and I still remember a few swims in which I believe my pre-race positive self-talk and visualization played a significant role.  

I have tried to teach Susan about positive self-talk and visualization, believing she might find it helpful in her competitive figure skating.  I think I introduced the concept too early in Susan's life, because the first time I tried talking with her about visualization, she looked at me a bit like I was crazy.  I don't think she was closed to the idea -- I just don't think she "got" it.

I have tried again off and on over the last few years to talk with Susan about visualization, and while at times she has sounded somewhat interested, I feel like the idea has not really "clicked" for her.  

The week between Susan's rapid desensitization to peanut and her "first" updose flew.  I use quotes around the word "first" because, of course, Susan DID a "first" updose back in May -- but that was before she was moved to the open-label injection arm of the clinical trial and began receiving Xolair, so, in some ways, that updose (and those that followed) didn't really count.  (Actually, when I think about those updoses in the spring and early summer -- when Susan was likely trying to consume ever-increasing amounts of peanut without the protection of Xolair, I feel in some ways like those updoses should "count" *MORE*...)

We fell into a pattern of Susan skating early in the morning and then taking her peanut dose (in what I have come to call a Smooth Monkey -- as it is a variation on Ben & Jerry's Chunky Monkey) blended with chocolate and a banana at the rink each morning.  It feels right, somehow, that she takes some of her doses at the rink, which is her home-away-from-home.

As the days sped by, and Susan's "first" updose drew nearer, I started to realize I was hearing positive self-talk from Susan about her "first" updose.  Gone were the fears and uncertainty I remembered prior to those very difficult updoses in the spring and summer...and in place of the uncertainty was a calm belief that the updose from 250 mg of peanut (a single peanut) to 375 mg of peanut (1 and 1/2 peanuts)  -- would go well.  Susan believed it so completely that I just...listened.  And soon, I found myself believing it, too.  (Ah, the power of positive thinking...)

The logic went something like this:
During the rapid desensitization, Susan consumed a dose of 120 mg of peanut and then a dose of 250 mg of peanut only thirty minutes later -- a total of 370 mg of peanut -- just about the equivalent of her first updose.  Susan was certain the first updose would be fine...and despite what I still think is a bit of PTSD (in me) from our initial efforts at rapid desensitization, I started to believe what she was saying.

For Susan, the morning of her first updose was business as usual --she skated and then attended the 504 Plan update meeting we had scheduled weeks earlier.  In the face of her tremendous success during the two-day rapid desensitization to peanut the week earlier, there was not a lot to talk about.

We sat around a table in the office of her middle school with the Principal, Associate Principal, Nurse, Social Worker, and the Associate Principal for Student Services -- a group of very busy people -- and marveled at how well Susan had tolerated the rapid desensitization to peanut.  Because we really did not have as much to talk about as we had anticipated, we talked about what the results of this clinical trial might mean for others, Susan's bravery, and (just a tiny bit) about how Susan's incredible results might impact her going forward.

We didn't hash out what might happen if Susan suddenly became nauseous...we didn't hash out what we would do if Susan was not well enough to attend school and attendance became an issue...because, thankfully (incredibly), those were not real concerns.

We agreed to stay the course.
Susan would continue to e-mail her teachers to remind them of an upcoming absence and to request information about what she would miss...and we would continue giving Susan her peanut dose at 7:30 am with the plan that I would take her to school around 9:30 am, as long as she felt well enough to attend.  

We agreed that I would let them know how the clinical trial progressed...and as I counted out the best-case scenario (with Susan updosing every week without need for extension weeks and then explained the possibility of up to six extension weeks), I was struck by the fact that some day -- some day in the very near future -- we might be able to talk about real-life changes (read:  elimination of the requirement in Susan's 504 Plan for a peanut and tree-nut free lunch table).  I felt teary-eyed.  I'm pretty sure at least one other person in the room took a deeper breath than needed...

And then we adjourned our meeting.
While we had not actually done much, we had accomplished something incredible -- we were working as a team...and Susan clearly felt supported by this awesome group of women at her school.

Susan and I grinned at each other as we left the building -- and while it felt a little strange to leave with her without her having spent even a minute in class, I don't think either of us really cared.

As we drove into the city, I marveled at how calm I felt.
I wondered why the first updose did not scare me.
(After all, PEANUT scared me -- but, for some reason, this updose did not.)

When we arrived, the nurse and doctor checked Susan out carefully -- I have come to understand just how important it is that Susan is as healthy as possible before her immune system is challenged...and then, it was time for her updose...325 mg of peanut protein -- from a single peanut to a peanut and a half...  

Just before I poured the milk into the Bullet Blender cup, I marveled at how little peanut protein powder there was in comparison to the banana and the chocolate whey...and marveled at the science behind it all -- and at the possibilities...

Susan hung out, casually drinking her updose while the machines and nursing staff monitored her vitals.  While I felt more confident about the likelihood that she would be able to tolerate this updose, I was happy that she was being closely monitored.

And then it was time for Susan's second least favorite part of the clinical trial -- the Xolair injections.  I advocated that Susan check the syringes of Xolair out before her injection, taking the position that Susan should take a minute to appreciate the medication that was likely responsible for her incredible results the day of the rapid desensitization.

She looked at them -- but, mostly just to humor me.

The only thing Susan likes less than receiving an injection is having her blood drawn, and that came next.  Over the months, I have done many things to distract Susan while she is receiving injections and having her blood drawn -- she likes it way too much when I sing (poorly), so I often try to find an appealing funny story about my childhood or my life with my husband before she was born...this time, I told her about my family's first road trip with the fishing/ski boat my father bought shortly after marrying my step-mother.  It is a good story...and she was...amused.

After the injections and blood draw were complete, I rewarded Susan with a Bejeweled lottery ticket, which she promptly set to work on.

As we were finishing up, I caught a glimpse of Susan's study notebook.  

It is always present when we are in the CRU, but, it is usually open, and I haven't ever really looked at it.  Seeing the volume of documentation that has accumulated since February gave me pause -- and I hoped that all that has been gleaned -- the good and the exceptionally difficult -- is captured within that binder.


1 comment:

  1. Dear Tatellis,
    I am 19 years old and have suffered a life-threatening peanut allergy for my entire life. Even though reading about OIT makes me instinctively a bit sick to my stomach (how could it not?), following your story really gives me comfort that I might someday be able to overcome this disability. In the meantime, I am really rooting for Susan! Please know that there are many people following your blog who admire your tenacity and courage, whether they say so or not.
    Allie Pendery
    P.S. You are a very powerful writer. Thank you for the time you put into sharing your story with us.