You build a pool, stupid. That’s what you do.

Well hi there everyone. Had to go try on my Aplastic Anemia jeans and see if they still fit. They do! I know you’re all complaining about the Monday morning of the time change – oy, is that hard! Try Time-Change Monday x Hospital-Change Monday, and the joys of exploring a brand new cancer center, and we’ll talk about how hard it is.


We got Theo up, dropping him off at John and Tina’s at the crack of early. Must say climbing those steps pre-breakfast is a little PTSD-y for me.


Off to Cedars to learn a whole new system. It definitely felt weird not to be with our peeps, and not to know the layout or procedures. But we’ll figure it out. All we need is Paquette.


Backing up – it’s been two months since we saw Paquette. It’s been radio silence for most of you, and I’ll say Lisa has been pretty much acting like there’s nothing wrong. That may or may not always be a good thing. I see she gets more tired at the end of her days, and has joint pains and hand and feet pain from the medications, but all small variances.


The big thing is that she’s been sick. A lot. As one of those people who rarely ever gets sick, and usually for a day or two is she does, this is definitely a moment of accepting a new normal. She gets sick often, and when she does she just can’t seem to shake it. We have to continue to be hyper-vigilant about her being exposed to illness.


She’s had a viral chest infection for a few weeks. Appears to be mostly past it now, but it was a big one. That illness is what we hope explains her blood results today.


Remember too that Lisa is on huge doses of very intense drugs. We’re anxious to bring her cyclosporine levels down, but that requires stable blood that has found its top level for her. Paquette wants Lisa to go as high as she can go before beginning to taper the medications and hope the numbers hold.


So… her blood was good, but not great. We saw slight downward trends, and nothing going back up.


Her platelets had been 109k 2 months ago, then 111k on 2/3 and they were 106k today. Now, context – that’s great for someone with AA. 150k is the low end of normal, but 106 is something she can live really normally with. That said, it’s a slight downward trend. At this point hard to say if it’s the illness suppressing her system, or if there’s anything more significant going on.


Also very possible we’re reaching her plateau. And if that is her new top – great. That’s a fine top. And once we know we’re topping out we can finally start to take her down off her medications.


Her hemoglobin is holding about steady at 11.1 – a little less than you have, anemic sure, but nothing huge.


The big drop-offs were white blood count.


Her White Blood Count went from 4.6 two months ago to 2.9


Her ANC went from 2.7 two months ago to 1.1


Again, this could all be explained by the illness.


Or… something could be going on. What? Not sure. Maybe PNH clones growing.


Also her reticulocyte count is down again. 50k two months ago. 30k today. That’s an indication of new baby blood cells. There are less of them.


So, definitely no medicine tapering. Which sucks, taking 12 pills a day ain’t fun, and the side effects aren’t easy.


We see Paquette again in two months.


And Lisa is going to have a blood draw in 10 days before he’ll okay us flying to Hawaii in two weeks. She may just have to fly in a mask, but okay. Then we’ll sit on a beach for a week. Because our family needs that.


By the way, try the filter for vacations that is: “How’s the health care and blood supply?” No Mexico for the time being.


I’m not terribly worried about the results. I think we may have found her top, and if it’s around here, we’re good. She’s good. If it’s the illnesses, we’re just seeing the body get hammered as it fights those viral invaders.


But it is a good reminder that the new normal isn’t actually normal. That said, we went for a hike yesterday for the first time since she got sick. We stopped 20 feet from the parking lot and stared at the spot I left her in the sun four months ago while Theo and I hiked. 4 months ago, that was as far as she could walk from the car. Yesterday we climbed up to the top of the mountain and hiked back on down again. And she felt great. That’s what matters. There’s blood results and life results, and at some point the life results matter more.


I know she’s a little bummed today that this isn’t just over. She’s gotten used to clean, clear, victories. But this isn’t a sprint, it’s a marathon. And she’s totally winning it.


A few pictures of us nesting. We fixed the bad flow of our front porch and, as many of you know, Lisa has always wanted a pool. When you survive a life threatening illness and you’ve always wanted a pool, you know what you do? You build a pool, stupid. That’s what you do.



4 thoughts on “You build a pool, stupid. That’s what you do.

  1. It may not feel like it, but from my clinical opinion, things seems pretty stable. Remember that there is a margin of error with lab tests (a couple of points either way) so the difference between 111k platelets and 106k platelets is pretty minimal. I know that you have your own fabulous expert and I am extremely grateful for that and he knows WAYY more than I do about this. Just wanted to offer my two cents.


  2. Of course you’re building a pool! Life results vs test results is a wonderful and healing way to look at things (even as your grasp of the all the medical details is, of course, always impressive). Sending big love to all.


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