Keep Pressing On

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing?" - Matthew 6:25

Last night we slept a little better than the previous one. I guess sleep deprivation helps, although the nurse shift change brought the midnight vital sign check and attendant bladder attention call. And then, for whatever reason, they decided Elise needed Tylenol at 6 am and proceeded to wake her up to give it to her. Uh OK I appreciate the thought I guess. But that's all just wanking...

Some really good news is that Elise is off "contact isolation". Her PA pushed the issue and convinced the epidemiologists that 3 negative test in a row should be sufficient. That means that she's not locked in a room (yet) and everyone who comes in doesn't need to "gown up" every time they enter and "degown" every time they step out. Being on contact isolation is an incredible hassle and it means that people don't just drop by to see how things are going. But now she's off and that's a relief (not to mention that Elise doesn't feel quite as stigmatized).

She's feeling Okay although the central line placement and bone marrow sample procedure have left her sore. The tylenol seems to help, but I'm sure in a few days she'll be as good as new. Just in time to start chemo next week (Wednesday).

At rounds this morning her medical team brought up the idea of delaying the transplant further in order to resolve what appeared to be constipation. After an xray and a GI consult they decided this wasn't necessary, but there were several hours that I wasn't sure how how things would go. Doing the right thing is paramount, but further delays would just be demoralizing, so I was glad they've decided that a further delay isn't necessary to go forward.

Else got her Lupron shot today so she won't have a period for 3 months. That should help when her platelet counts fall and also keep her general blood counts better. While I think she was happy about this, when the nurse brought in the shot she was taken aback: the needle was about 2 inches long! Turns out it only needed to go in 1/2 inch or so but it did freak her out a little.

She also had a session with the ENT today. They used a long thin camera to look inside her sinus to make sure there wasn't an infection. The CT scan a week ago showed some fluid buildup and they wanted to make absolute sure. It was pretty cool to watch - I told it looked to me like going through Luray caverns without the stalagmites and 'tites (ie boogers). The stuff they used to numb her nose was apparently pretty atrocious tasting, but not as bad as advertised. She did really well with the procedure and checked out 4.0.

The candida test also read positive which was what they hoped for (read the earlier post on the subject). This was a sigh of relief because after an initial positive result it had cleared up and looked negative. It only started looking positive again this morning.

The really good news is they gave her a "pass" to stay at the apartment tonight and Saturday nights. We have to go in to have her catheter lines flushed and apparently they want to start her on a new antifungal tomorrow, but that should take an hour and then we can go do something more enjoyable than sit in a hospital on the weekend.

On Sunday she starts the conditioning medication buildup. The first medication is Paliferman. The conditioning routine will cause mucositis which is a painful condition where mouth sores (and possibly sores through the GI tract) occur. Some people say this is the worst part of a BMT. Palifermin reduces the incidence and duration of severe oral mucositis by protecting those cells and stimulating the growth of new epithelial cells to build up the mucosal barrier. But of course it has it's own side effects. If these don't hit Elise too bad then we may get some additional nights in the apartment.

So we have a nice weekend ahead. Tonight we went to Rockville Town Square and had a drink and listened to a blues and for a while in an outdoor courtyard area. Tomorrow we'll likely go to see the new Tom Cruise movie or Godzilla. And with the additional time, maybe Becky will be well enough to join Elise by the time the really tough meds start next week.

So all is well, and I'm trying real hard not to be anxious, but it's difficult.