Ok...This will be a long blog.
This morning Jackie had a "blood work" session. This is standard procedure and is no big deal. We spent most of the afternoon with doctors and nurses in preparation for the transplant. Tomorrow she will have another chemo treatment and she will have her central line "Hickman Device" surgically implanted. She will have the heavy-duty chemo on Friday, Saturday, Sunday, and Monday with radiation on Tuesday and transplant on Wednesday. She will begin her "anti" drug regimen beginning tonight. She starts with a drug called "Actigall" which protects her liver. What is Actigall? Bear gall bladder (bear bile). Guess it must be difficult to collect bear bile. I haven't seen the bill, but with all the PETA people out there it is probably expensive:)
The real drug regimen begins on Friday morning. There are so many "anti" (antirejection, antibiotic, antifungal, etc.) drugs that we will be given a spreadsheet that lists times and quantities of each to be taken. The spreadsheet chart will be changed daily. She will remain on penicillin for at least a year.
Another transplant nurse told us how great the donor match was. It is a perfect "10". We learned today the blood type is even the same. From what I can gather this adds some sort of minor benefit. Of course we spent some time with the doctor today warning us that things could still go very wrong. We also spent time discussing living wills, advanced directives, etc. Talking about the morbid aspects brings the reality and gravity of the situation back to mind.
We learned today that even once the 100 day period ends Jackie will still need to make return visits every 2-4 weeks for a year or so. It is possible some of the lab work can be done in Tulsa, but they told us to plan on frequent visits back to Rochester.
We asked the doctor if they had ever had an event where someone was prepared for a transplant and the stem cells weren’t ready. He said "yes" – on September 11th. He had a patient ready for transplant and the stem cells were coming from Europe. They had to drive to Canada and re-route the flight. He said things turned out fine.
I also learned today that Jackie’s DNA and the XY chromosomes would change. I’ll admit I don’t fully understand this, but it seems that Jackie’s blood type will show one XY chromosome sequence while a swab of her gums or a hair sample would reveal a different result. What does this mean? It means that she may be able to commit the perfect crime that DNA can’t solve! I’m told there was a whole CSI Crime Scene TV episode about this unique situation. I guess I’ll have to watch it to see how this all works. In the mean time if I end up murdered and Jackie is a suspect make certain they collect blood AND hair samples:)
They still plan on trying to do this entire process on an out-patient basis. They’ve told us to expect some – and maybe a lot – of hospital stay. The nurse said that it wasn’t that long ago that many of the people undergoing transplant were in the hospital almost the full 100 days. They’ve found that people subjected to fewer germs if they stay out of the hospital. They also tend to stay more active. Being out-patient forces you to get out of bed and make the 2 block (for us) trek to the hospital every day. Of course insurance companies have had a great deal to do with the in-patient versus out-patient change. They aren’t paying for our apartment, but they do pay for the hospital room.
Lastly, I wanted to send a thank you to Brent and Janees Taylor and Ruth and Stanley Lapidus for the gifts. Brent and Janees sent a box of chocolate covered cherries and a cheesecake assortment from www.berries.com. They are REALLY good!
We also received from Ruth and Stanley a nice card and a beautiful silver picture frame with a picture of Chloe (our dog) from Tiff’s wedding. Jackie was really PLEASED and has it on the nightstand. Thanks to everyone for the gifts.
I also wanted to remind everyone to please not send any plants as gifts. We are not allowed to have any type of plants in either the hospital or our room.
Well, that’s enough for one day.
Bruce & Jackie
From Rochester, MN