Day 25 post transplant (75 to go!)

Dearest everyone,

The days are swooping by aren't they?!?  This time of year when I am getting ready to hit the classroom in August, a little panic sets in but also a lot of excitement about what the new school year will bring.  Of course this year I am not going to be in the classroom to start the year...so I am thinking of other things to challenge myself with in order to keep my mind active and body busy.

There is an unfinished painting sitting in front of me, I have at least a zillion songs that I would like to learn and/or write (some of you might get invited in on that!!), A book to write and trips around the world to plan...also corn to freeze and tomatoes to can etc etc etc. Just a few little projects :) Every time I think of home I smile.  Dan is doing a wonderful job of holding down the fort and looking after my garden.  It is growing like crazy so if you need anything-- go on out and pick some fresh herbs and veggies for yourself!!  

Since leaving the hospital on 7/13, I have been jumping through all the hoops they ask of me.  Everyone seems thrilled with my progress, saying I am really ahead of the game.  I have been walking miles every day and when too tired to do that I do yoga here at the apartment.

Sometimes I have to really talk myself into getting moving-- but when I do-- I feel better.  I wear a mask in public places and wash my hands incessantly-- staying away from crowded areas but enjoying being out and about. Friday I was transitioned to only going to the hospital for outpatient infusions on Tuesdays and Fridays instead of everyday:)

The at home infusions are done with compression balls that hook up to my CVC (central venous catheter) and I can actually stick them in my (big) pockets and go for a walk.  It is wonderful to be able to be home most of the time and not subjected to the hospital every day.  This week I will have another bone marrow biopsy (Thursday 7/28) and PET scan (7/29) to see how I am doing.  Neither of these is a big favorite of mine... both will happen once a month until I come home.

This past week my big sis Amy was here with me in Houston while Bekah enjoyed a week vacay in Costa Rica, hosted by her nanny family from Pittsburgh, the Liebermans. She had some great adventures and a really incredible time hanging out with her family.

Amy and I stayed busy with hospital visits and home infusions as well as visits to the museum check out: Franz Winterhalter and Yayoi Kusama at the Museum of Fine Arts Houston) reading good books (finished The Last American Man by Elizabeth Gilbert. Don't worry Kathleen, I am starting Frankie tomorrow!!) and watching some great older movies (Joyful Noise with Queen Latifah and Dolly Parton; Sister Act 2 with Whoopi Goldberg; Amadeus – how did I never see this movie??? story of Mozart's fame and early demise)

Ames and I had a great time together -- to be honest I think I drew the longer stick -- she waited on me hand and foot-- cooked -- grocery shopped-- did her nurse Amy thing -- carted me everywhere --even when I pooped out on walks she would come back with the car and get me. She has spent about a month's time with me down here and I am suggesting that the next time we spend a month together it should be on a cruise to Hawaii or something.  

Things were going along great and then Friday evening I hit a rather large wall.  So I haven't left my bed much except for bathroom, glass of water (must drink at least 2 liters a day), and infusions at the dining table... Are we worried about this? NO WE ARE NOT!  Because it is how most people feel all the time after a transplant... and besides I am already feeling much much better:)

I hesitated even saying that part because I don't want anybody needlessly worrying.  They told me that I am doing fantastic and that I really probably have too high of expectations. HOWEVER I say: I heard from a reliable source (Joel Osteen and also God HIMSELF) that this whole healing thing was going to be accelerated. Can I have a witness?! I rest my case.

Having said that, please keep my friends Fela, Karen and Leon, JP and Pat and also Angela and her family in your prayers.  We are all out of the hospital now.  All praying for each other and hoping that we all come through this thing well.  They are such amazing precious people.  Check out Karen's artwork at her Facebook page Karen Bibas artist.

All my love to all y'all

Linny