Photo by Rebecca Gould Photography

Friday, June 20, 2014

The Peanut Plan

Friday morning was dreary.
Despite my wanting to feel optimistic -- for I knew we would have a real plan at some point in the day...I felt that the weather matched my mood.

I had spent the better part of the night wondering about what would happen next in the clinical trial.

I knew that -- despite how hard it had gotten -- Susan was committed to seeing the trial through.
And while I admired that in her, I felt the need to think it all through very carefully.

I knew there was the possibility that Susan would be moved to the Open Label Xolair injection arm of the clinical trial.  If that was the case, the decision was easy.  The worst was (hopefully) over.

But, what if the Site Coordinator did not approve that? 

Susan was anxious.
She wanted to know whether or not she would be taking the 60 mg peanut dose...
She asked repeatedly.
And each time, I told her that I was waiting to hear from the clinical trial coordinator.
I hated that I did not have an answer for her...
And as I had never been anxious like this before...about anything...I was not sure how to support her.

The inner turmoil that she must live with every day is greater than I can begin to imagine, I suspect.
For years, we have avoided peanuts.
We have taught her to decline to eat foods that even might be cross-contaminated with peanut.
We have filled our van with peanut-free snacks, cereals and candies in Canada and have been regular customers of Peanut Free Planet.

And now we are asking her to eat peanut.
We are pushing her body to tolerate a level of peanut that makes her feel really, really unwell.

Susan wants this, and yet, she is afraid of it at the same time.
I think that must be the definition of brave -- going on in the face of something incredibly, mind-boggling frightening.  Eating a food she knows could kill her on a quest for a treatment (maybe, even, someday -- a cure?) -- not just for herself, but, for others.
That's bravery.

And if there is some anxiety mixed in there -- well, as much as I wish it were not so, as much as I wish Susan did not have to endure that anxiety, I also think it is...perfectly normal.

As the day wore on, Susan's anxiety, I found, increased my own anxiety.
I was hanging out at the rink, trying to proof read a blog post, but I could not concentrate. 
I was thankful that Susan was occupied (distracted, I hoped) by skating with a group of good friends.

I chatted with a friend.
I filled her in on how Susan's week had been...
She has first-hand experience with cancer and chemotherapy and observed that, for Susan, the peanut is like chemotherapy.  It seems the very key to her wellness will first make her sick.

I have turned that observation over and over in my mind.
I (thankfully) do not have first-hand experience with cancer, but I suspect chemotherapy is worse.
But -- this might very well be a close second.

And then -- it happened again.
That very unusual burp followed by violent dry heaves.
While I don't do vomit, I have found myself doing A LOT of vomit over the last few weeks.
I am getting better at it.

And I have decided that there is a difference between regular vomiting and vomiting when the body is responding to an allergen.  This could be true of other vomiting, as well (I am by no means an expert) -- there is more force -- as though the body is desperately, aggressively, anxiously trying to rid itself of something.

I paged the clinical trial coordinator.
She called me back right away...and apologetically explained that they had been gathering information, waiting for answers.
I rushed to explain that even though Susan had not taken her peanut dose the previous day -- even though we were approaching FORTY-EIGHT hours since Susan's last peanut dose...she had vomited...again.
She was silent.
I was, too.
This was so very, very difficult.

She apologized.
I felt badly that she felt badly.
We signed up for this -- we wanted so very, very badly to be in this clinical trial.
Even in the bleakest of moments, Susan was able to say that she still wanted to do this.
Even in the bleakest of moments, I was able to say very clearly -- to myself, to others -- that this was a journey we were committed to.

We know this is not a cure.
This is a treatment -- a step toward greater safety, freedom.

The clinical trial coordinator apologetically explained to me that they would need Susan to at least attempt a dose today.
I understood -- going too long between doses is not good at all, and can, in fact, lead to increased severity of allergy (and we certainly do not need that).

The Clinical Trial Coordinator called back quickly.
They had a plan.
With little to no fanfare, she announced that the Site Coordinator had approved moving Susan to the Open Label Xolair arm of the trial.  Incredible.
Before I could possibly process this, she went on to say that they wanted to decrease Susan's peanut dose to 45 mg a day.

The anxiety lifted.
While Susan had had some trouble with the 45 mg peanut dose (that's what she vomited the day of the skating competition), other than that one episode, it had been fairly tolerable.

I met Susan with the incredible news when she came off the ice.

The only drawback was that we would need to drive downtown on a Friday afternoon to pick up the proper concentration of the peanut protein for Susan's new dose.  It was worth it.

The day improved even more when a good friend -- who just happened to be leaving Lurie as we were getting in the car to drive there -- offered to pick up Susan's prescription peanut protein. 

And just like that, we had our afternoon back!
We used it to create the best care packages I have ever sent to overnight camp. 

Each box has approximately 75 - 80 balloons.  Each balloon holds at least one puzzle piece.  When all the balloons are popped, there will be 100 puzzle pieces.  We sent one to Meg's cabin and one to Carl's cabin.  Too bad we "forgot" the boxes.  I guess they'll have to use good teamwork!

Oh -- and the 45 mg dose?
And exactly what we needed.

No comments:

Post a Comment