Friday, December 31, 2010

New Years Eve

Hello Revelers!
I've got 2 days off from clinic and am spending it with James. We shopped a little last night and snapped up some post christmas bargains. I scared the young kids in my mask!! My son Lyle and the lovely Katie came by for a snack and drinks and video chatted with my good friend Mari and the Lizama Clan in Spain and my art buds in Cville. James made some great soup for us. He's become quite the chef. I spoke with my doc on thurs and he says I can drive if I feel up to it (I DO!) and so if all goes well I'll be home by the end of March. Here's hoping to all going well. I'm still trying to stay in the moment! A huge task for me!! I 'm including a pic wearing a gift from Ian and Bridget. I think it's very fashion forward- no??
Happy New Years!

Wednesday, December 29, 2010

Post Post Post

It's been a quiet week in Lake Woebegone. I've had two days off and head back to the clinic tomorrow. I've been doing odds and ends (as long as it's sanitary!!) and resting a lot. James has been with me and has also gotten in a little rest. Today I walked on the beast for 30 minutes- uninterrupted- I'm pretty excited about that. I restarted taking an anti pneumonia drug I took about a month ago. It's very strong and I take it for two days then wait 5 days. So far no side effects which I'm really glad about. We went to the house yesterday and James pruned my roses for me. It's been on my mind and he tok care of it. Those roses worked so hard last summer and spring and way into fall. They were full of frozen buds. Imagine. Such hard workers!
On monday the physicians asst told me my chromosomes are ALL normal! 100%. So far so good. I take another bone marrow test next week so we'll see if the results hold.
Take care,

Sunday, December 26, 2010

Post Christmas! Day 59

I had a great Christmas. Ian, Bridget, Lyle an Katie came for supper which was cooked by Bridget. That girl! She made a tenderloin roast (organic butcher), roasted potatoes (2 kinds), roasted brussel sprouts, curry sauce, pecan pie and ginger bread! It was so good! It was a wonderful night- lots of good conversation and again...the food! It felt great. I'm a lucky lucky ducky. Today james and I slept until 11ish, had breakfast and yes......took a nap! What decadence. Now we're eating leftovers. So far a perfect day!
I am NOT going to do any work...I swear! Maybe a second nap tho. We bought a new juicer we'll try out later. I gotta eat more greens!!! Hemoglobin!!!!!!
I hope your Christmas was and continues to be wonderful.

Thursday, December 23, 2010

Day 56

It turns out I did not have a staff infection- the labs reported two false positives! So there. I had my big fat day of antibiotics yesterday- I was in the clinic with my cousin Alice from 10-4:45. It was too long a day for me. However, there was a time before i started the drip when I had to walk down to radiation for a chest xray. It was a short walk but during it I felt absolutely ok. My pace was good, I wasn't winded. I just felt like myself. I think that was the first time I felt regular. It was great. I want more "regular" for Christmas!
I'm in the clinic again today to mag up and then I have THREE days off. I'm so excited. The fam is coming over on Christmas- Bridget is cooking so a feast is insured. We're ready for christmas- no tree (fungus!!!!!Germs!!!!!!!bacteria!!!!!!!!) but I do have a glittery snow man snow globe that changes colors and swirls glitter automatically. The chinese holiday manufacturers are geniuses!!!!
I'm working away on my on-line classes for Spring and I'm feeling pretty good about them. I'm going to work on them again this afternoon. I want to be READY!
Take care,

Monday, December 20, 2010

The Fabulous World of Drugs!

I did NOT have a crazy long day at the clinic today. They couldn't get my drugs up from the pharmacy so I'm getting the 5 hour drip on weds. I have one more dose of the at home infusion and I'm done with that. It takes 2-3 hours to administer and I do it twice a day. That is cutting into my nap time! I walked the beast today which feels good. I'm doing better at taking the stairs up to my apt too. When I first took the stairs I had to lie down for 10 minutes- now I'm just winded. Improvement, no???

Sunday, December 19, 2010


Ian's birthday is today! Yesterday we (they) had a huge sushi feast at our apt. It was great- Lyle and Katie essentially hosted and it was a wonderful time.

Bumps for Beryl!

The doc called me on fri night and called me in for saturday. I have two different kinds of infections and he wanted to pound me with anti-biotics. I started a new one yesterday and on monday I'll have a 5 hours infusion of antibiotics. Hopefully this will blast me out of infection city and back to Sollaworld. These drugs tire me out, that's for sure. I'm trying to hydrate to avoid kidney complications etc. James is taking good care of me and being awesome. When I married him I had no idea how great he was. I just thought he was cute and fun. What a mensch! This afternoon, if it's not crowded, we're going to World Market (in a mask of course) so I can look at shiny, glittery, colorful things!

Thursday, December 16, 2010

Thursday Dec 16th

I went to clinic today in the driving snow!!! I had to get labwork done and met with the doc. He said according to my biopsy results my bone marrow is 100% donor which is amazing and fantastic. We came home and i celebrated with a long long nap. The snow is good for sleepy time (everything is good for sleepy time!) I'm about to hit the beast again. I'm becoming one with the treadmill. I'm trying to build up my blood too - more meat please! Things still taste a little off but I'm eating. eating and drinking and walking. I go in tomorrow for mag and a transfusion then I'll have sat and maybe sunday off! It's a weird life, no?

Tuesday, December 14, 2010

Dec 14th- Just a quickie

I'm feeling really good. My med levels for a particular drug have been reduced even more and I feel much better. I walked 15 minutes on "The Beast" and I'm going to go for another romp. I had a non-clinic day which I spend with my friend, Barbara. She made me and James a great potato soup- perfect for this coooooollldddddd weather. Tomorrow i go to the clinic which should be mad fun.
To The Beast!

Sunday, December 12, 2010

Dec 12th Day 45!

Hi All,
It's been another week and I'm on day 45 since my transplant. It doesn't seem that long and it seems forever. My taste buds are getting less salt-focused. Sweet things taste more sweet and less salty which is a very good thing. I can also drink tea now which is huge. I go to the clinic tomorrow and expect scads of blood work to be done. I'm not sure what else- it's always a surprise. I worked on school stuff for Spring today and it felt very good to do "normal" stuff. I've been hounding Craig's list all week for a used treadmill and I got one today. James and Joe picked it up for me and it is a mammoth mofo! Katie and Lyle helped us muscle it upstairs. My docs told me last week I was losing muscle mass and would continue until I could exercise more. Knowing my wimpy florida self was NOT going to be walking in the cold with a mask on I decided I needed me a treadmill. This fat boy is it. Losing muscle mass....I don't think so- I'm WAY too vain for that! Bald and saggy???? Not an option and the hair is taking it's sweet time!
Let There be Light went super well and James is now a rock star AND my slave monkey! Two for two...very nice.
Take care,

Thursday, December 9, 2010

Thursday Dec 9th

I'm in the clinic. I had a sonogram of my liver and gall bladder today. They need to rename the gall bladder- jeez those are ugly words. Gall Bladder. Nope- I'm not liking that name. I 'm getting a little mag and also seeing the doc. Tomorrow is Let There Be Light. We're very excited about it. Fenella is taking over a lot of the heavy lifting. Everyone is pitching in. It's going to be amazing.
I'm feeling pretty good- no drama- no surprises. I did see some tiger cubs in my stomach during the sonogram. I asked the tech and she confirmed. I think that's what the doc wants to talk about. I'm concerned-- don't tell James!!

Tuesday, December 7, 2010

Tuesday Dec 7th Pearl harbor Day Remain Calm!!!!

Remain Calm and carry On!
Hello Americans,
It's another day at the clinic. I received BLOOD, magnesium and fluids. I've been here way too long! I got here at 9:30 and it's 2:20 now. Sweet baby jesus wants me to go home. Pretty soon I think. I've been working on my hospital project today. It's a guide to going through this "event" for future patients. Something I wish I had had. I've been talking about it for months and today is the day. I'm going to go to the store with my brother, Joe, and get him some gloves and a hat and scarf. Floridians!!!! He's here for 3 weeks and I want him to stay warm and well! This friday is Let There Be Light at PVCC- 6-9pm. This will be the best year ever. Check it out- you will be super jazzed- it's outside of the Dickinson building and features 19 artists doing light based artwork. Hot Chocolate and snacks will be available in the Dickinson Commons. The faculty show and Stacey Evans' Tracking People shows are up in the galleries. Both are wonderful. Seriously, best faculty at ANY art school in Virginia. (modest, as ever- I really think we're the best in the region!!)
Stay warm!

Saturday, December 4, 2010

Saturday at the Clinic

I dropped in today for an alleged "quick visit". Ha! They tricked me! I'm still here. They think I might be getting too much of a drug and wanted to test me.
We're gearing up big time for Let There Be Light. James is all light all the time. I'm doing what I can from a distance- I'm probably just annoying people!
My brother is on his way - maybe in that old cutlas. Nah- he's cruising up in the Bnz. Miami Style!
The pic is of Ian and Bridget backstage with Emmy Lou!

Friday, December 3, 2010

I swear I posted yesterday!

I have no idea what happened to it. Maybe it' in "the clouds" as they say. Nothing exciting. I spent a quiet ay with my friend nancy. I am really getting the hang of these naps, I must say. Today I went to the docs. My platelets are falling- 108 but my white blood count is good 7.1 and my red is around 2.85. I'm not sure if I should be glad or what- they say the drugs are keeping my platelets supressed. I'm about done with these drugs. I stop one kind and get 2 others! My friend Stacey is with me today. It's been really neat having these simple days with friends. I'm going to enclose a photo I sent my bud Angi a few months ago. No, I have NOT grown hair back. My body seems happy to stay bald!!! How cant his be? I'm half Italian now!!