Another week has past and things have largely remained the same. Hospice came Monday to check all my sores (namely the hole in my forearm), and take blood. They make sure I'm set for meds for the week and off they go. Then my home health nurse comes in and does a wonderful sponge bath that I quickly get over my embarrassment from. Thursday is the big Dr. day where we get the blood numbers and are told the fate of my imminent future.
This week, the bilirubin came down again!!! It isn't low enough to do chemo but we're getting there. It went from 4.4 down to 3.5! He said if it gets below 3 we would discuss chemo. I'm soooooo close.
Except I am scared to rock the boat. I've been doing "ok" lately and don't want that to change. But we all know I'd do anything to hang on as long as possible.
Emotionally the past two weeks have been really hard on me. I've fallen, pretty badly, a few times. In fact, Friday night my head played ping pong against the bathroom wall three times. I left Matt a nice round hole to fix and got myself a 3 day headache. I don''t even know how it happened....up one minute, down on the ground unable to get up the next. It's getting harder and harder to rely on others help. I feel like such a burden and that I'm not offering what I should be. I can't do the simplest of tasks and it seems evident that once it gets to that point there's really no going back.
So this week I'm going to try and just remain positive about what I CAN still do. We are going to Monterey today for the night. Take the girls to the aquarium, eat seafood and candy (not together), buy silly sweatshirts, etc. Just have FUN!
Another unfun thing Matt and I did this week was secure and reserve our final resting places.
We chose an outside crypt at Holy Cross Cemetery. I picked out readings, readers, songs. etc. I think this was as hard on them as it was on me. But it does feel good to have some important stuff done that I can still control.
Here's to a week of good moods, low bilirubin, and as always; miracles.
This week, the bilirubin came down again!!! It isn't low enough to do chemo but we're getting there. It went from 4.4 down to 3.5! He said if it gets below 3 we would discuss chemo. I'm soooooo close.
Except I am scared to rock the boat. I've been doing "ok" lately and don't want that to change. But we all know I'd do anything to hang on as long as possible.
Emotionally the past two weeks have been really hard on me. I've fallen, pretty badly, a few times. In fact, Friday night my head played ping pong against the bathroom wall three times. I left Matt a nice round hole to fix and got myself a 3 day headache. I don''t even know how it happened....up one minute, down on the ground unable to get up the next. It's getting harder and harder to rely on others help. I feel like such a burden and that I'm not offering what I should be. I can't do the simplest of tasks and it seems evident that once it gets to that point there's really no going back.
So this week I'm going to try and just remain positive about what I CAN still do. We are going to Monterey today for the night. Take the girls to the aquarium, eat seafood and candy (not together), buy silly sweatshirts, etc. Just have FUN!
Another unfun thing Matt and I did this week was secure and reserve our final resting places.
We chose an outside crypt at Holy Cross Cemetery. I picked out readings, readers, songs. etc. I think this was as hard on them as it was on me. But it does feel good to have some important stuff done that I can still control.
Here's to a week of good moods, low bilirubin, and as always; miracles.
I like the #3 and I'll keep praying for lower numbers. You continue to inspire me Melissa and you certainly know how to remind us all to #McNicholUp. Prayers continued daily and often.
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