Day 63 or 9 weeks Post Transplant

Today marks 9 weeks post SCT! It was also the last day I had to come in to the ATC (Ambulatory Treatment Center) to receive transfusions of Potassium and Magnesium.
It's was a bitter sweet moment because I had to say goodbye to Jill (my pharmacist) and Agnes (my advanced nurse practitioner) and Tracy (my primary nurse practitioner) who would see me each visit to ask about my symptoms, check me out, review my blood work, make changes in my medication and answer any questions I had. I told them they were like my security blanket! The picture above shows me ringing the bell that typically is rung by patients on their last chemo treatment. However, since that happened in the hospital, my nurses felt I should ring it today!! Now I only come in once a week to get a blood check and to see Dr. Champlin in the stem cell clinic.

They say the longer you stay together the more you start looking like your spouse.....but this beats all!!!

Day 58- June 15, 2014

 

Above is a photo of my good friend Dani who came to visit me last Tuesday. It was a short visit, but time seems to erase itself when we get together. Dani and I go back to being neighbors on Silverwood when she moved there when we were in the 3rd grade. We then went to the remainder of grade school and then on to high school together. We also shared our love of horses together when Dani got a horse and kept her horse at the same field where I kept my horses in Houston. Dani lives in San Antonio now, so we don't see much of each other. Seen here we are displaying the prayer blanket that my St. Agnes friends (especially Polly Mestre) made for me. The best part of this illness is the opportunity to re-unite with old friends!!

Not many medical changes occurred this week from the week before. I was taken off one pill, but another two were added back onto my daily regimen. Ugh....my stomach just keeps complaining....bouts of intermittent nausea and diarrhea started back this week. Oh well, it's all part of the recovery. Overall, the doctor's and nurses are still watching me closely for medical symptoms,
especially signs of GVHD. There are some elevated blood levels that indicate I may have something inflaming my liver. This could be GVHD or it could be one of the meds I'm on. Nothing alarming at
this time though.

My sitter for Mon-  Thurs. of this last week was Shirley again....Sweet Shirley. The photo below shows Shirley and her dream car! Aimee Ferrell then offered to fill in for Shirley on Friday when I went to the hospital for my re-check. It was so fun to be able to visit with Aimee and we even had an opportunity to go out to lunch ....what a treat!! Also this week I was able to fit in a visit with Ann Biro and Caroline Bernard (SHE group) whom we met at mass on Thursday morning. What a surprise treat that Ann invited us all over to her house for a delicious breakfast and visited with Caroline who happened to be visiting from Washington D.C.

Day 50 June 6th

My good friend who lives near Kansas City was my sitter for the majority of the week. We went to school together from first grade all the way through high school! And have stayed in touch the remainder of the time. Mary Ann's mother lives only minutes from Mark so we had some nice time to visit with her mom ("Aunt Ruth Ann" to me) also! Ruth Ann is a still quite youthful  and sharp witted in her 92nd year!!.

I learned this week that my stem cell report looks good with signs of nice engraphment. I also learned from Dr. Champlin that they had to cancel my DLI (Donor Lymphocite Injection) scheduled for next Friday. For unknown reasons the donor T-cells that were reserved at the time of the transplant were not growing correctly and I won't be able to proceed with a clinical trial with a new medication for GVHD. I was a little apprehensive about the pending procedure that's goal was to give me a small degree of the GVHD but could have given me the raging type of GVHD as well. So I am taking the outlook that it was God's plan for me to NOT have this at this time!

Another thing that REALLY upsets me is that I was told by my doctor that I need to wait another month before I can safely visit with my baby brother, Greg who lives at a nursing home. I miss him sooo much and I love giving him kisses and receiving his kisses back!

I continue to be grateful for the blessing of my healing and feeling so well this soon after my transplant. Praise God!