Tuesday, November 18, 2008

Change of companions today. Robbie left to return to Vermont and Lori is here for a couple of days. Robbie and I had a good time together. Yesterday at the clinic I received permission to eat restaurant take out food, so we bought JackStack burnt ends and Carla came out and joined us. Carla's birthday was Sunday so we had birthday cake Saturday night for her.

So I can have guests.

Also at the clinic yesterday the liver enzymes were up again so I'm still on twice a week visits and still have the PICC line til they go back to once a week. I saw Abby, the greatest nurse practitioner, and she took away the V-fend altogether for the rest of the week. I go back on Friday. The other counts were steady. The ANC (absolute neutrophil, some ratio of the other counts) is 1.1. It has to be solidly 1.5 before I can go to restaurants.

Robbie and I walked the dogs around the block this week. That felt really great. I can walk them outside if someone else leashes them up. I'm waiting for the predicted 65 degrees tomorrow to do it again.

Everything else is a frustrating "wait and see." Wait until past 100 days, and closer to the time of the event to see if it is okay. Translation: don't make any non-refundable vacation plans til you get the all clear which could be "a while."

Mom and Dad are still at the lake. I think Mom is feeling pretty good now but they are enjoying the break while the sisters pitch in and stay with me. It doesn't look like I will get back to my house before the 100 days. Everyone at the clinic yesterday said no dogs for 100 days. Deep sigh.

But the holidays are coming up and I have shopping to do. and my room upstairs feels a bit more like "my own" than being in Mom & Dad's room did. I am ever so grateful to them for loaning it to me for so long, giving me time to recover enough to go up and down stairs several times a day.

I still have the rash which is not too annoying and is a good thing. During the preparation for the transplant, the experts told me that people who have a little graft vs. host seem to do better over the long run than people who have none. It comes and goes and covers most of my body at one time or another. I'm satisfied with it at this point.

The liver stuff I am a little worried about. It could mean some kind of internal graft vs. host or it could just be a reaction to the drugs. I hope it is the drugs. Meanwhile I have no special instructions about it. Just change and wait.

And that's the rather unentertaining update for today.
Cathi

7 comments:

Anonymous said...

Wow, I am just beside myself getting poll position again. I guess that you where my head is at. Graft Vs. host, brother vs. sister. It is all natural, you were born with it in this family. Tell Abby it is all in her head.
A big thumbs up for Jack's. I get a little funny when I do not get Jack's for a while, but I do live in NH & Bar-B-Q is something they look up in the Dictionary out here. I think children at toy stoves do a better job in their heads at it than you can get out here. It is a coastal thing, no ribs to save your life. Glad you enjoyed the ribs and the company.

Anonymous said...

Man, Walt's pumped about the pole position and I'm crazy excited about 2nd place. While most rashes aren't ideal, this one is good and we want the positive long haul.

We went out to one of our last DINK dinners tonight. Harrison seemed to know b/c he moved a lot while we were seated. He obviously gets the energy from his grandma!

So jealous you had Jackstack I can't even think about it...

Love,

Conor

gail said...

Such excitement around here today! It is so wonderful to see you with so much energy, Cathi. And Harrison is soon to come - I'm rooting for another 11/19 bday in the family. Ben's 21st b-day is Wednesday. When I called him tonight to sing HBD to him (it is already Wednesday the 19th in Israel) he was bummed out that he did not get his birthday pancakes with candles.

So glad, too, that you get to have company & take out. Things sound so wonderful!

love, gail

Robbie Stanley said...

The BBQ was indeed wonderful and, as Walt said, impossible to come by here in the NE. It was so great to see you, looking so good and strong with that very hip short hair (Carla and I both think you should keep it as is). We're all looking for some baby news now...

Anonymous said...

So excited for you. Outside must feel great. Things have been a little crazy around here. Went looking at floor stuff yesterday, have to really get my head into this, Hadn't planned on doing the entire downstairs at once. Can't imagine how those that had 4 feet of water in their houses coped.
I'll look forward to eat at Jack's when I make it to KC.
Think of you often.
Love Diane

Unknown said...
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Unknown said...

So glad you had fun with Robbie - I bet Hayward was over the moon to see you.

Guess Harrison has yet to make his appearance, so no Grandma jokes just yet.

Take care and keep working on those stats.

lots of love #2 GOT