Thurs, 7.31 - Little by Little

Today's entry was almost titled 'Live and Learn' as that's how today started. I'll share more about that later, but I knew the title was right when Mom said those words to me describing her current status! I started smiling and pointed at my laptop (these are often written over multiple sittings - get up to hold the tray to spit, adjust pillows, get Kleenex, or the frequent nurse and doctor visits).

So the reason for Little by Little is there was progress today, but not as quantifiable as the past couple of days. It's one of those days that remind you it's a marathon and not a sprint. Ganguly said the lungs were clearer. They're just not an additional 10% and when pressed the best estimate I could get was 2 - 5% better. He said they're definitely a lot better than Tuesday when you reference that X-Ray.

Additionally the WBCs were at 0.2 today. We continued to reiterate to Mom that the other aspects are getting better, and that's all we can hope for. Now the good thing is about her hitting 0.1 a few days ago then still maintaining a low level is it should help out with the next piece.

Ganguly almost and I mean ALMOST called for the bone marrow biopsy today. He tentatively scheduled a time even. But by the time he left this morning he was pretty convinced he wouldn't. The reason is we're in a very in-between state. Chemo took her WBCs all the way down and they wanted the biopsy last Saturday or so in order to confirm everything was dead (it likely was considering we went all the way to 0.1). But now we're in a state of regrowth - just not full maturity. He said that should come sometime in the next 5 - 7 days. The risk is he could misinterpret cells today as non-leukemic due to their immaturity. And knowing that we will probably use some GCSF treatments based on this biopsy, it's good to be conservative.

Now additional good news came in the form of some clarity regarding relocation back to 41 (Room # TBD but it won't be 02 and I'll update her 'address' when I have it). Ganguly said Monday b/c he'd prefer a full staff versus the weekend shift on transition. But I did overhear the ICU docs talking to him and he said he's leaving it up to them. Then this evening her nurse from last night told me she thinks she heard tomorrow. Either way, we're all happy and proud that it looks like she'll get to trade-in her penthouse for the middle class digs on 41. It'll be back to biking and exercising there!

The reason for 'Live and Learn' is she tried to push herself as hard as she did yesterday right out of the shoot today. It started when I was exiled during the morning shift change, and she asked for her laptop. Well she realized that once she starts reading emails she churns on them in her head long after she reads them. And that lead to some anxious breathing. So she requested I let everyone know emails are great to receive and are getting read (some much later than they were sent) but don't expect answers. The blog is the easiest place to get in touch with her as she asks us daily to read the posts to her. Even then, there is some paraphrasing. :)

Additionally, there are no outside guests for the time being. We appreciate all the support, but just cannot risk it for her right now. The health is one thing. But she really does love people, and she tries so hard to be 'on' when people are here. It really drains her so we'll let everyone know when it's good to come by again.

Once she settle down for a nap (more on this later), she had her first physical therapist visit. He said she shouldn't have any issues transitioning back out of here as he was pretty happy with her leg strength and overall range of motion already. That was good to hear. He commented several times that she's way ahead of a lot of the people he works with. It was interesting for Mark and I to watch though. He left her bed in a form that required her to pretty much sit as though she were on a dinner or office chair - the range of motion for these hospital beds is crazy for those that haven't watched closely enough!

Well she started to fall asleep. And knowing how uncomfortable it can be on your neck when you wake up from a nap in that position, we asked the nurse to come in and adjust her bed back. That started off a string of about 3 straight doctors and nurses back-to-back-to-back. Mom looks at me afterwards and says, 'See, never fails. If you want someone to come in, lie down and take a nap.' Luckily we did have them queue up like that though b/c she took a good 2-hour nap after that. She actually requested the same (where the nurse adjusted her back to - not the upright and locked) position tonight!

They've also kept the lowest oxygen mask on her at 50% overnight. When she pulls this off, that will be a great turnaround from a few days ago. She's nervous about it, but I told her it's like training wheels. She's gotta ween off it so no better way to do it then go overnight.

I think the best highlight today is other than the motivational signs, cards, blog chants, and emails - she's got a visual she's utilizing. I guess several years ago there was a skit at Bartle (the scout camp she frequents often) where the 'Pneumonia Brothers' came in. She literally laughs every time she tells the story. Imagine Mom with a glass of wine in one hand, holding her other hand out to excitedly tell the story, and that laugh she has (cracking herself up a bit) when telling the story. Those of you who have been around long enough know what I'm talking about. Couple that with a little bit of the funk she's got in her lungs and a slightly weakened laugh / animation then you've got a pretty damn good visual of how she says 'Pnuemonia Brothers' - deep, raspy, with a laugh.

So anyway, her visual is the 'Pneumonia Brothers' in her backyard and they're surrounded by all the good fireflies she's caught. She's running around catching only the good ones and throwing the Pneumonia Brothers into the area to get eaten by them. I have to say - I Love It and she does too.

That's it for now, folks. Be good!