HuCART Day+129: January in Philly

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This week at Beaudin’s lab check, his b-cells were at 6%, up from 2.7% last week. So, we return to Philly. We boost.

All January plans, flipped on their head.

Doing something comes more freely to my spirit than waiting and as such when we saw the 6% results it felt a seamless transition into “Alright, let’s get to it then.” Emails, calls, flights booked, time on hold with insurance, all the things. The blackhole of time between Christmas and New Year’s where everyone just wants to melt into their couch, suddenly filled with to-do lists and packing lists and unanswerable questions about using additional experimental medications.

The body knows. Knows how to leap back in to action. How to open the results email and within moments start doing the mental gymnastics to arrange what all of this means.

The trouble is the body also knows. It knows what it means to get results that are not ideal, results that illuminate this is all an experiment, results that turn the lights on in the dark, black cancer room and show that you are still very much on a tightrope.

I have had low back problems for a while, and seem to throw it out once every year or so, but throwing it out on December 26th was unexpected. Also, the fact I threw it out completely, to the point of 24-full hours of tear filled immobility from leaning over to put something on the stairs, very surprising.

“You’ll need to be laying down for this,” as though my body was putting me on bedrest because it knew what was coming.

So I did. I just laid down, in a hell of a lot of pain, for 72-hours and then finally managed upright to take Beau to the hospital to check his labs. And then promptly back to the horizontal position of my bed, to wait on results.

6% return. Well, that was above 3%, definitively. Which is good. Definitive results are good.

Within a day it was confirmed we would return to Philly immediately and begin pre-chemo Monday. The boost is more or less like another infusion. Pre-chemo, infusion, observation with just a shorter observation time.

We will spend the next 96 hours trying to push through urgent insurance pre-authorizations and praying that my back gets the memo that while laying supine for 3 days is fun and all, we have shit to attend to. As a small bit of proof that I have, in fact, grown through this experience, I am not worried about insurance getting their act together. Last January, I was on the kitchen floor with my stomach in knots over whether insurance would approve things. This year, nope, I am just booking flights, packing bags, and deciding whether I should bother to take down the Christmas tree.

Returning to Philly feels like no big deal and the biggest of deals at once and so I’m just sitting in the swirl. Well, actually, I am just hosting my brother and his family who arrived the yesterday.

Hopefully at some point I’ll have the feeling come over me that I really should pack.

Until then, it’s like I’m on denial island. Except instead of two weeks on a beach, this time it’s a quick denial island stay littered with taking urgent phone calls, replying to time-sensitive emails and printing off journal articles to make big decisions around all while playing board games, drinking mulled wine and soaking in the coveted time that is the holi-daze.

These two cousins, adoring their time together, making denial island so much more sweet for me ❤️

3 comments

  1. Prayers through the 60 days every, as has been my routine for three years. Allow your faith to carry you through these days.
    Side note: Those girls are adorable!!!!!!!

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  2. I am so sorry the rollercoaster goes on with the added stress of back pain. I will be praying for you, Beaudin, Josh, and entire family. I pray for healing and an end to this cycle. Keep strong and trust in the Lord even if it feels He is not there.

    Love, Kelly Garno ( f/n/a) Kelly Martin

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