15% Complete Responders

Hi there. Hello. Remember us? Yeah, it’s been two weeks. We tried that once before and didn’t make it, but this time a full two weeks have passed since we had a blood test. Lisa has been getting back to her normal self. Dinner party attended. Yoga attempted. Star Wars in a theater attained.

My position as her bouncer is tenuous.

But the last 48 hours she’s been feeling a little off. Headache and dizzy. Thing is, we’ve had enough time to see patterns, and truth is, she gets scared before blood draws. And this week was no different.

In we go. She’s worried something has dropped. I’m pretty sure it hasn’t, but it ain’t my body’s tea leaves we’re reading.

It’s the holidays. We bring cookies and wine because there’s no place better to grease the wheels than a place where they stick you with needles. And we wait for the laughter. Because Paquette is always heard first with a big burst of a guffaw someplace on the floor.

He walked in a little… low on energy. For him mind you. But boy, when you have a diagnosis like this, you become a friggin expert in body language. Lisa and I gave each other an ‘oh shit’ look. Something seems wrong. But we don’t know what. He does an exam. Then pulls back, picks up her results, and hands them to her saying, “Here’s my gift to you.”

Do you want me to stop now and remind you where we were? Or would that just be cruel?

No, you need context. Two weeks ago we were at 8.3 hemoglobin and 50k platelets.

Anythings else I can do to vamp? No?

Well, Happy Holidays everyone. We didn’t get to a holiday card, and there’s no gift in the mail. So instead, as Paquette would say, accept this as your gift:

70k platelets

9.6 hemoglobin

ANC still pretty low.

It’s perfect right? And yes, it makes your ass look great!

Paquette lets go one of his laughs and tells us, “You’re going to be one of the 15% complete responders.” Yes please!  15% of people act like they’ve had a BMT when they’ve just had ATG. Lisa is on track for that.

We haven’t even hit three months since the treatment was completed. He reiterated this is as quickly as a turnaround like this could possibly happen. And I know from the other AA patients I’m interacting with that so many people are at 9 to 10 months waiting for something, anything to happen. And the other patient we know spent 18 moths getting to 50k. This is a miraculous turnaround.

Then he tells us his bad news. But on a scale of the shit we’ve been through, we’ll figure it out. He’s leaving UCLA. We’ll see him in a month (a month?!) one last time at UCLA and then he’s taken a job at Cedars. We’ll no doubt follow him there. By then we should be down to visits every three months. So, it’s a little further drive.

Caveats – this is one of those diseases, you just don’t know what’s going to happen. She’s still on a full loaf of cyclosporin and her blood pressure is high, and we’re watching the kidneys closely. And she’s at about 1/2 the blood stuff that you have.

But really, I think we’re past the worst of all of this, at least for now. Lisa can pick up the slack as far as I’m concerned.

My parents are here through Christmas. We are so happy to have them around to celebrate with us.

We have two weeks of holiday to relax, and take in all that’s happened. What a year it has been.

We’re going down to Palm Spring for three days of cocktails (me) and hot tubs (her). Life is good. And we are grateful.

Expect love and sappiness in a special New Year’s update, but for now we have a life to get back to thank you very much.

This is how we’re feeling today:

Image 18
Check the color on her face. Yes, it’s golden hour, but still:
Image 4
That’s what we got. And it’s a lot. She’s gonna beat this thing like a champ.
Much love,
Chris

 

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