100% Engraftment — Still a Long Ways To Go

Dear Family & Friends,

We received terrific news on Friday.  Barry is fully engrafted, meaning his (angel) donor’s stem cells have taken over and he can now  begin to recover.   This is a milestone that he never reached on his first transplant and it is the reason he was given a tougher pre-transplant regimen this time.  David Miklos, who came up to the ITA to celebrate with us within 3 minutes of getting the news said that maybe the fevers he was having were engraftment and not infection.  We’ll never know.  There is so much of this that is a mystery to us, and unfortunately, still a mystery to the doctors as well.

So while this is wonderful news, there are many obstacles ahead of us. Read the rest of this entry »

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A STIR-CRAZY NINE DAYS

I’m baaack! Just when you thought it was safe to go on my blog and get the objective facts from Bonnie, here I am to give you the unexpurgated (well not quite — I do expurgate a bit) version of The Hospitalization starring an award winning cast including a beleaguered, overworked 24/7 caregiver, a team of MDs, nurses, and a very sick and grumpy patient.

So, Saturday, June 5, I’m totally wiped. I sleep from two in the afternoon to nine the next morning and wake up wiped. Bonnie calls the ITA (the Infusion Treatment Area) and they tell us to come right in. Soon I have a fever. They try some Tylenol but the fever and chills keep bouncing back. After several hours, Dr. Weng admits me to the hospital. I’m thinking, well maybe a day or two at the most. That shows I’m not thinking. Read the rest of this entry »

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Nine Fun-Filled Days at Stanford Hospital

Dear Family and Friends,

Barry and I got home on Tuesday after spending 9 days in virtual isolation in the hospital. He had fevers, headaches, chills, sweats, intestinal problems, etc., not to mention the anxiety and depression. While we may never exactly know what the diagnosis was/is, he’s much better. The theory we like the best, Read the rest of this entry »

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ANOTHER POINT OF VIEW

May 20, 2010: It is day +2 post transplant. I have a slight nausea and a persistent headache that is more annoying than debilitating. I am consuming about 30 pills a day and god only knows what they are doing. I drink about three liters of liquids per day and most of them taste pretty crummy because of the chemical taste in my mouth. Needless to say, I’m spending a lot of time peeing and washing my hands. My skin is very sensitive.

Bonnie told her side of the transplant story yesterday. She left out a few salient facts from my point of view. First, on transplant day, I began with 18 minutes of radiation. By minute 17, I was sweating as if I was in a sauna. I had to stand throughout and nearly collapsed. They had to stop the bombardment and bring me a chair and a fan so I could recover enough to stand for the last minute. Then they rolled me out in a wheelchair. It was no walk in the park. This was total body irradiation, which means I got zapped in places where, for me, the sun don’t normally shine. Last night it felt like sunburn in those especially sensitive locations. A gift that keeps on giving.

I don’t remember much of the infusion. I was out of it. Now everyone tells me I smell like creamed corn (because of the DMSO preservative they put in with the cells). I can’t smell it though. I’d like to get just one whiff to know what they are talking about. It’s a little embarrassing running around smelling like creamed corn. They say it will go away soon. That’s fortunate. I don’t even like creamed corn.

There was a big up yesterday when I woke from one of my many naps. Mimi was on video chat. I sat down in front of the computer and she came running toward it, saying “Baabee” or something close. She recognized me, remembered my name and was happy to see me. It makes going through this worth it.

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Successful Transplant #2 — The Long Slog is On

Dear Family & Friends,

Yesterday Barry received the previously-frozen cells from his donor via infusion.  It all went very smoothly, although it was a very weird experience for both of us.  The cells had been frozen in five separate bags inside flat metal disks.  We had been under the impression that they had been in a freezer, but we were told that they had been packed in something much stronger, a liquid gas, to a temperature of -175 degrees.  The BMT Tech wheeled in a large cart with two coolers and a warm bath on top.  One bag had been defrosted and it had an expiration time of 4 hours post-defrost.  One by one, the other bags were put in the warm bath to defrost and then infused into Barry.  The four other bags had expiration times of 30 minutes.  It was like a production line, with the BMT Tech, the physician assistant and the nurse, all checking name, date of birth, medical record number, number on bag, donor number, etc., etc., many many times.  They did not make any mistakes and we felt very confident.  The whole transplant took about 35 minutes.

And the good news is that Barry tolerated it very well.  Read the rest of this entry »

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