HuCART Day -4: For the sake of the roadmap to freedom.

A long time ago, back when I thought this would surely, surely!, be a simple and quick, straightforward little leukemia stint, I had an, oh so humble, little thought that I would write about our experience and it would be a roadmap in other people’s suffering.

It came to me wrapped in an overly emotional quote on motherhood that went something like, “One woman’s scars can be another woman’s roadmap to freedom,” which I first heard at a MOPs convention, but I think can be attributed to someone before that.

And it’s still true today that someone else being able to read about our story and feel even one drop more hope would keep me writing until Kingdom Come. But damn if I am not just tired of having so much to write about. I mean, it’s a funny thing really, because you want to know when I produce my best writing? Naturally, when I am stressed and worried, and neck deep in the cancer black hole. Days go by that feel normal and I can’t conjure much worth typing about them, but give me some dark cancer shit and I will wane poetic.

Hey, also, I’ve decided to stop, stop cussing. Not that I had ever fully stopped, but there was a season when I combined our CaringBridge with my blog and suddenly had a bunch of readers that were more from the “prayer chain” side of things and I thought perhaps it was best to censor, just a small bit, my words. That worked for a hot second, until I realized that many times I was writing posts and thinking, “What will xxxx think of me saying that….?” And that leads quite quickly into the people pleasing that I know so well and am always trying to unwind. So, in an effort to realize this is my blog, my work, my thoughts, and that I can say whatever I want, I have resolved to cuss as often as I see fit. Ok, there.

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The other day. The other day I got an email from a mom who had used the “contact me” form on the blog and actually, well, contacted me. A mom who’s daughter is in the thick of it, and who found my blog by chance. A mom who wrote to me and thanked me so much for wiring. A mom who asked me about what got us to here and who I connected with a couple different doctors both at CHCO and at CHOP for second opinions. A mom who I now text every couple days to check-in on. A mom who I see post to the FB cancer pages and feel sweetly connected to. A face to a name.

This is why I write.

It’s that, and that also sometimes the words eat me inside and won’t let me have one shred of peace until I let them out. That too.

Sometimes I don’t feel like writing though, even when the words are eating away at me. Because even if it’d feel better to get the story on to paper, I always wonder what is the value of other people reading this sorrow. Like last night, the conversation with Beau before bed with him asking, “What happens when you stop existing?” and “What do you think my purpose is?” and how I laid next to him and stared at the ceiling and thought to myself, “I am not sure I can go on if he dies.” Which sounds hyperbolic to anyone who hasn’t also laid in bed and stared at the ceiling and had good reason to ponder their own child’s death.

Beau then asked me when we would be adopting a baby. I told him “Oh. Never.” and when he asked why not, I said, “Because I am so tired, Beau.” which is mostly just a reflection of the fact I am not sure I will ever feel rested again.

“Well, I am going to adopt a baby when I grow-up.”

“I think that’s great Beau. You will be a great dad,” and as the words left my mouth I felt suffocated by the thoughts. The thoughts that everyone understands, but no one really wants to spend much time acknowledging go along with cancer. The thoughts that go something like, “I wonder if you will even be alive then…“

“Do you think all the moms say that? That their kid will be a great dad,” Beau asked.

“Meh. Yeah, probably. But I mean it Beau. I think you will be such a good dad.”

“Yeah, me too. Maybe I’ll adopt lots of kids.”

“Maybe that’s your purpose, Bubba. Maybe your purpose is to be here and be a dad to those kids.”

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Anyway, on that light note, though I feel like writing nothing, I offer this, to anyone looking for some details on the roadmap.

Today is Beaudin’s fourth and final day of pre-CarT chemo. The last couple days have been straightforward. He has had minimal side-effects and has been able to keep the nausea under control enough to be eating well- which is the main concern. The nausea train is hard to get a handle on once it’s left the station. Nausea causes blood sugar to drop, which increases nausea, which causes connections in your brain that low blood sugar mean nausea, which cause you to not want to eat, which cause your blood sugar to drop, which cause you to be nauseous, and so on. Actually, a big increase in cancer survival rates came on the tails of the introduction of Zofran, an anti-nausea med, because patients were able to eat and nourish themselves. Fun fact.

5 nights in to being here and it appears everyone is settling in and sleeping through the night, finally. And as such, after a couple nights of decent sleep, Joshua and I are starting to feel like functioning humans again. Turns out traveling across the country, sleeping in hotel rooms with 3 young kids, and then arriving in a dense city for your child’s cancer treatment while fiercely under slept, doesn’t allow for the expression of our best selves. Fear not though, we’ve been navigating this rollercoaster for years now and have stopped fighting altogether during these belligerent states of sleep deprivation. Martial Bliss during Cancer 101.

We’ve settled in to our townhome which is lovely, and small. And I am not sure if the “small” is a positive adjective like “lovely” or an adjective used in opposition. Lovely, but small. Lovely, and small. I guess really I feel both, its “Love and/but small.”

It is clear that Beau is feeling the chemo. Lagging behind a bit when walking with us, or not being able to twist off the toothpaste top for lack of grip strength. Last night he complained that he would have to go to the hospital again for the fourth day in a row, commenting, “Every time I go I just come out feeling a little more crappy.”

We will be glad to have a break for the weekend. Next week, bone marrow biopsy and lumbar puncture on Monday, then CarT cells on Tuesday. Then we wait. Forever.

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Philadelphia part duex, 8 days down, 39 left to go.

** oh and if you want to send us snail mail, or visit unannounced like a creep, our address is:

2200 Madison Square

Philadelphia, PA 19146