Tethering your fears

Friday, December 18th

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Yesterday morning I got devastating news from the mother of the the little boy from Mill Valley whom we met in the clinic back in September, who has leukemia, and whose aunt is a firefighter in the city.

The mom was in tears. On Tuesday her son had had a routine lumbar puncture. It came back showing full blown leukemia. A relapse. They are in the hospital, and starting all over again, and the little guy is really sick.

I was crushed for two reasons. First, I get exactly how my friend feels. I can 100% empathize with her. I fully understand that her life just shattered into a million pieces. On Wednesday she quit her job as a schoolteacher, a job she had only been able to go back to this school year, when her son went into Maintenance. And now, three weeks in the hospital, another round of Induction, which will be doubly severe. I love these guys and am so very sad for them.

And second — I’m sure you know what I’m going to say — this is terrifying because the boy had a great prognosis. He has the same form of leukemia as Tristan, had never before had leukemia cells detected in his spinal fluid, and had, like Tristan, pretty much sailed through much of the early tough stuff. So, the mom’s news over the phone was more or less like having a sharp metal garden hoe raked through a shitload of fears that I had barely put to a very shallow rest. I spent lots of yesterday crying. Tomas knew something was very wrong as soon as he got off the school bus and saw my face. He and Phoebe gave me dozens of hugs throughout the afternoon. I was just so wrecked. There it was, staring me in the face: I will NEVER not be worried about Tristan.

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But I did think on, and I did get to a…better??…place. I don’t think any mothers don’t hold in their hearts some level of fear about their kids, all the time, every day. We all do. But we keep those fears tethered to a stake deep inside the left ventricle so that we can function. We mostly have to just put them away, carefully harvesting tiny amounts of those fears when we repeatedly tell our kids to stay away from the road or to climb down from a tall stool. Sometimes, at least for me, some of those fears come untethered late at night and I have a few sleepless hours while I wrestle them back down. But I can squash them down, and I do, and so I’m not incapacitated. Point is, this is no different. I’m hammering in another stake and tethering to it the fear that Tristan’s cancer comes back.

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To be alive is to know you can die. In five minutes, or in a day, or in a year, or maybe not for a long, long time. If you can’t die at any moment, you’re not alive. To live happily, you know you can die, and you appreciate the fact of being alive, but you put fear of death away deep inside. Shit. It is what it is, right? Tether it and go on, Mommy.

Tristan and I are still in limbo here in Eureka. We did his labs yesterday at St Joe’s. They were slightly better than last Sunday, but not much better: ANC 500, still neutropenic. So, we did his labs again this morning. The suitcases and a million Christmas presents are in the car, waiting to be transported to San Francisco, where my family will converge in the next few days. If Tristan’s numbers are better than yesterday, we’ll head south today. If they are not, we’ll have to do labs again tomorrow, and his treatment will be pushed back a day. With each delay, our chances of celebrating Christmas Eve in the hospital increase — we’d have to be admitted to the hospital for however many consecutive days Tristan needs chemo while the clinic is closed or booked full. His next round is four days straight. If we can start tomorrow, we’d be in the hospital for chemo Saturday and Sunday (overnight Saturday), and then in the clinic Monday and Tuesday. If we start Monday, it’s Christmas in the Heme Onc ward. Sixth floor, get ready for a whole lotta Gorog-Paoli champagne consumption and loud Hungarian Christmas songs.

Tomas and Phoebe performed in their school play last night. Delays or not, I was so fortunate and happy to be able to see it. They were spectacular, and the whole play was a hilarious and colorful crazy story about famous characters who fall through a swirling vortex and end up in the wrong scene. My favorite part was when the Mad Hatter sat at a banquet table with Varth Dader (who told the Hatter in an asthmatic wheeze, “I am your father.”), Queen Amygdala, Hewey, Soda, and Princess Grayuh. (Get it? My fave is Queen Amygdala, instead of Queen Amadala…) It was loads of fun to see.

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Also, this past week, my best friend from high school visited from Vermont. Katherine stayed three nights, and we got lots of chances to do a whole lot of talking, which was great. She and Tristan really hit it off.

More soon, when we know what’s up.

Newsflash: we’ve just been cleared to go. Tristan’s ANC is still only 500, but our doctors and nurses were comfortable with calling it stable (as in not dropping) and expecting it to increase over the next day. We’ll start Tristan’s next round of chemo on Sunday in the hospital…so we’ll be done with the four-day round before Christmas Eve day. Phew. We’re hitting the road.

 

One thought on “Tethering your fears

  1. wow…..I keep thinking that worrying about a 20 yr old drinking too much in college and a 17 yr old behind the wheel of a car – in New Jersey – are things that require “tethers”…..hah! I am spoiled that those are my only fears about them for the moment (that’s a lie, but I won’t put the other fears in writing, too scary and too revealing). I worry about my Mom too, she’s coping with her condition, living at a home in a wheel chair is not exactly something one wishes for ones’s “golden years”, but it’s a very nice home, she is now used to it after 4years and I visit almost every day. I try not to stress about the small stuff (full disclosure, I rarely succeed in that department, Hungarian curse) ….I try to smell some roses and be thankful for every day. My mantra of “one day at a time” has been useful over the last years for me…..

    I think of you often Toni (and Gary), your Mom keeps me in the loop, but wanted you to know from me that….all my love, all my strength and patience(wow does a deep well of that help!) are all coming your way.

    Try to have a Merry Christmas with all your support systems in tow……and wishes for a very Healthy, Happier 2016…..Eszti, KC, Kalman and Zoltan

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