John Fiore 2.0

12:45 pm Dana here, the first round of stem cells are in. John is feeling pretty good, if a bit woozy from all the drugs they're giving him. But the first batch of Lisa's cells are in without a hitch. We are waiting for her to come up and celebrate with us! One more batch to go in but everything looks good!

John wrote the rest of this this morning before the transfusion:

Here we are at day zero, end of John Fiore 1.2, start of John Fiore 2.0. Everything is happening as planned. They are collecting additional cells from Lisa right now, 9:30 am, having collected yesterday as well. She must have gotten a call last night asking her to come in this morning. They have me all prepped with FK506, an immuno-suppressant, and they will use that drug to suppress the graft versus host disease reaction until the transplant takes. They will begin the transfusion some time around noon today, very anti-climactic. I did save a piece of carrot cake and asked the nurse if we could get a candle, but she didn’t think it was a good idea.

I woke up two days ago with mucositis, a very raw and sore inside of the mouth and tongue, a reaction to the irradiation and to the VP16. I just have to not grin and bear it. Oral hygiene is very important now, and difficult to accomplish with the sponge on a stick and saline solution I am restricted to using. I must be clenching my teeth all night too, because my teeth ache when I wake up. I cannot eat things like pancakes or muffins either, as they turn to mucilage instantly in my mouth.

They rigged me up with so many connectors for IV that I look like some kids Lego or K’Nex toy. There must be at least 8 access points on my tubing. Taking a shower and keeping it all dry is a major challenge. I try to accomplish this with Ziploc bags and lots of tape, but I am too hairy for this to work well, so I use the shower wand carefully and it all works out.

I sure do appreciate all the support and positive thoughts you all have been sending my way, and wish I could have all of you come visit us here, but the reality is the smartest thing I can do for the next few months is to become very isolated. The case nurse told me to only have direct family members visit; no windows open in the apartment; new A/C filters; mask on any time outdoors, i.e. to and from the car; windows in car closed; etc. Bubble Boy.

Manuel, Lisa, and Dana suited up.





Dana has been out looking for a closer apartment, and I think she has found one right here in Palo Alto, so we’ll have a new address soon. It's a little retro fourplex just a couple of blocks from downtown and less than ten minutes from the hospital.