I’m backkkkkkkkk. (And a bit all over the place might I say.)
You guys, I made it to the, well, what is it now? 483rd round of SuperMom? Honestly, I don’t even know. But now they are calling it the Quarter Finals and I think that actually means something because I dropped from my long-standing first place, to…. 6th!
<<<GASP>>>
I need YOUR help to get. Me. Back. To. FIRST.
We only have 6 days to get it done. Can you commit to voting for me DAILY until then?
As a reminder, Voting is free-a single vote for a Facebook verified human, and a double vote for a credit card verified human. (You are NOT charged on your credit card, just verified as not a Russian bot.) You can also donate to the cause, and get me one dollar per vote. Your choice!
Seriously, though.
Is this damn thing going on for longer than I ever expected? Yes.
Do I oscillate daily between giving-up and forging ahead? Yes.
Did I find myself in tears the other day because the same can be said for cancer? Also, yes.
Ok, go Vote! And then read below about why I started crying last week bc SuperMom is a big, fat cancer metaphor…..Because on Day 28, February 26, 2019, I thought we had gotten the “All-Clear,” that things were going to be straightforward….and yet….
http://thesupermom.org/2023/betsy-larrabee
AND YET, last week, some one thousand five hundred and thirty days later, we are still very much trying to understand if we should be whispering. (That’ll make sense later….)
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It was the Day 28 results and we needed them to be in our favor, we needed NED, no evidence of disease. It would set our course. Standard-risk, a straightforward path. We needed this, bad.
The doctor called, it was Eisenman back then, and shared the results. ‘It’s not zero but it’s so low that they call it ‘immeasurable’. So, this is great news, you’ll continue into Consolidation at Standard Risk.”
I got off the phone and whispered to Beau, “Bubba, the cancer is gone!”
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I thought I had written about it already. Written about how we were in the school hallway, his first grade class waiting quietly to use the bathroom when I got the call. I thought I had explained that I whispered to him and then he turned to his best friend and whispered, “The cancer is gone!” and his best friend had done a silly dance because that is what best friends [Luke] do. And then how his teacher sternly told them both to be quiet in her Christian Private School way. I thought I had written about how concrete it felt, in that moment, to see her correct them because the rules applied even still, and that consistency felt like solid ground in a stormy sea.
But I can’t find the post. Did I not actually write that all down? It puts me in a funny spot to tell it back now, because now… well, now everything has changed.
Now I see that I should never have whispered that the cancer was gone, and maybe should have only said, “They can’t seem to find it right now.”
Now I see that I should have stopped the teacher and said, “Excuse me, I do understand you are trying to maintain consistency, but my traumatized 6 year-old just got told his cancer is gone and so, for fucks sake, can he please tell his best friend that without reprimand? Can we please just celebrate and let Luke dance for a hot second because this is going to only get harder.”
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In third grade Beau was meant to learn his times tables, but we were in Philly, swimming in relapse and I more or less decided that on the list of priorities, school was ranked dead last. I would have him connect to WebEx for the class read-aloud, and if I recall correctly, we did all the worksheets that dear Ms. Murphy sent with us, but Flash cards? Rote memorization? Hell no.
I told myself, “If he survives, we will have long, slow days to memorize times tables. And if he doesn’t, if this is the last of it, and this is how it all ends, then what an absolute waste knowing 7 x 6 will be.”
It helped that during that time Beaudin was engrossed with speed cubing and was working to get a sub-30 second, 3×3 solve and had memorized probably forty different algorithms. “Clearly, his memory works,” I justified each time I saw him recall which algorithm was needed and when.
Beau is now surviving, I suppose….that’s what this is, right? And he is in 5th grade and still has to skip count by 6’s to answer a rapid-fire 6×9. He is slow at math and deciding he is bad at it. I try to explain, “But Beau, this is survival! Being terrible at your times tables is an amazing GIFT because it means you survived. This is it Beau, this is the dream!”
But he doesn’t make that connection and I suppose that’s ok. Maybe more than ok, maybe it’s for the best.
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Did you know that when I started this blog it was called, “Summer of Silence,” because I was so absolutely driven-crazy by my two young boys, born 20 months apart, that I made a rule one summer that no one could talk during lunch. Silence. I just needed 15 minutes of silence. I’d say overall it didn’t work, but it got me a nice blog title and probably a couple days of reprieve, though given it was over five years ago, I can’t recall exactly how many. Summer of Silence became a metaphor not so much about a quiet meal, but a place I needed to go and let out my thoughts.
Then cancer. And I thought, hmmm, well summer of silence kind of describes the season (as I started writing most on my blog the first summer of treatment).
And then relapse. And I thought, hmmm, well this abstracts it a bit, but still kind of describes the season because life is going on around us and we seem to be stuck. This photo I snapped while on the phone with CHOP, awaiting directive on how to move forward after the first CAR T had failed. I watched Jude move suspiciously close to the current and laughed at the sign that gave caution for the sift moving water.
My kids were happy, all the kids at this park were happy. Everything the was loud. The laughter, the water, the sunshine. And yet, I felt like it was all spining so insanely slow that there was nothing in me but utter silence.
And then finally I changed it. I changed the name of the blog to “The Heavy Wait.” And I figured I would write about it and let you all in on the master plan I had for summing up the whole thing with the fact this is all so very heavy and seems to keep us waiting.
But we are stronger for it aren’t we? Gah, it’s like we are heavy weights.
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Two weeks ago was the one year anniversary of Sweet Emily passing into life eternal.
That same day Beau woke-up weeping, for reasons unknown. I hadn’t connected the date, and was just concerned with his over-display of emotion at the crack of dawn. I decided that since we were due up to go get his IgG blood levels anyway, we’d just skip the school morning rush and go get labs and check them all. Check them all because sometimes weeping is just weeping, but sometimes weeping surely must mean that the cancer is back.
It was raining, dreary and gray, which felt right because Beau was weeping and my stomach was in knots because would this dreary, gray day not set the perfect stage for terrible news? Beau walked back to have his labs drawn and I recalled how many times I had carried his weeping body, against his will, through that hallway. He sat by his own volition in the chair and I recalled how many times I had sat with him on my lap. He explained to the tech which needle he wanted and which hand he expected her to pull from and I recalled how many times we have had to navigate the “we want the orange butterfly, not the yellow.” and the, “we know hands are harder, we will not do the elbow crease.” I stood outside the door and flashed back and forth between then and now.
After the lab draw he had surely stopped weeping, and I pondered taking him to school, but he was complaining about his stomach, and his head.
“Beau, do you think you can make it to class?” I really couldn’t get a read on if this was real or something psychosomatic.
We pulled in to the driveway and my phone pushed through a calendar alert. I looked down to check it:
Sweet Emily’s Home Going, May 2nd
“Mom, I just don’t feel right.”
“I know bubba, neither do I.”
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My email pinged with Labs results and I quickly scanned them as Beaudin got out of the car.
“Labs look good,” I whispered.
We took the day off, together. Cleared the schedule and did more or less nothing. Sometimes you push through and stay the course, whispering your survival, and sometimes you decide that if we survive this, we can figure out the school part later.
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The Heavy Wait 