We are settled at UCLA in Room 6151 with a nice view toward the ocean (although the fog has been pervasive since we arrived). Wednesday was a relatively quiet afternoon and evening - just lots of getting settled, lab work, paperwork, questions and introductions and explanations. We had a "regular" menu dinner - Ed had pizza which he liked, so now we know he'll have at least one thing to eat, since that pizza is also on the "low bacteria" diet which he is now on. They switched him to the low bacteria diet yesterday after they started the first chemo infusion - just 3 hours long - a drug called carmustine (BCNU). Ed tolerated the infusion really well. He didn't get the often-reported headache and nausea that go with this chemical - and they are really giving him quite a number of medications to prevent these reactions and keep him comfortable. Thank goodness - the boredom and confinement alone is enough to deal with -- when this is all over we've both taken a solemn vow NEVER to watch back-to-back episodes of "Swamp People" just because it's the best thing on TV at the time! I know more about 'gator huntin' than anyone living outside the bayou needs to know. Usually I'm okay with learning quirky stuff cause it often comes in handy during the random Jeopardy category, but I'm pretty sure this subject will never come up!
Ed had a good breakfast - french toast, corn flakes, scrambled eggs and canned peaches - I'm glad he's still got a good appetite and eating. That single factor is making such a big difference the past several weeks and he's up to 150 pounds, which is a far sight from the 129 he hovered at during the worst of it. He says that food still doesn't taste the same and he feels differently when he eats than ever before, but hopefully it will all become familiar and pleasant again in a few months.
I'm in the office this morning or payroll and end-of-the-week wrap-up. They will be starting the second type of chemo today, which is the ARA-C with etoposide. These are the strong chemos that Ed had some tough reactions to before. They need to increase the dose by about 7 times and infuse it for the next 5 days, so we're gonna hunker down and take all the meds they can offer to minimize the side-effects. These 5 days are the big guns to wipe out everything left in his body to clean everything up for the collected stem cells to have a nice healthy new home in which to engraft. They are giving him gut-cleaners to strip the bacteria from his intestinal tract as well, so everything will be as clean as possible. We don't quite know what to expect, but we'll just go day by day. Starting today, we're moving into high alert for infectious/contagious germ control, wearing masks, lots of hand washing and he's got all kinds of antibiotic & anti-fungal meds, anti-fungal powder for his body, mouth rinses, etc. He has also agreed to participate in a clinicl trial for a vaccine to prevent shingles in post-transplant patients (which happens quite frequently from what we understand). 2/3 of the participants will get the actual vaccine and 1/3 will get a placebo - we won't know which group Ed is in because it's an FDA "blind" study. We're hoping for the vaccine - shingles can be an extremely painful condition and very debilitating. I would hate for him to have to go through that. Those injections begin this week as well, so there will be lots going on now. We've decided that the pop-culture i-phone catch phrase "There's an app for that...." translates into "There's a pill for that...." in the hospital setting. Seems like any minor thing we mention in terms of a symptom results in more pills being ordered. It's crazy, but apparently effective. Finally, I can put that advanced Excel spreadsheet class to good use! Maybe in my quiet time I can do bar graphs and bubble charts of medications. Nah.....I'd rather be watching Swamp People........
So that's the update for today. Late last night I got the access information to set up my laptop and break the UCLA shroud of privacy that controls the internet access around the campus, so I'll be able to log on this weekend and keep you updated of his progress. Thank you so much for the prayers and thoughts. Feel free to send messages and if you can't get on the blog to leave 'em, feel free to e-mail me at liz@lloydsplumbing.net and I will certainly pass on the messages. You can mail cards to the house and my kids and I will make sure the mail flow doesn't bottleneck. Unfortunately, flowers or plants are not allowed for a while - they try to keep a minimum amount of "outside" articles from entering the room once his counts start to drop.
I'll be back later to let you know how he's doing. Love to you all!
Liz
He says that food still doesn't taste the same and he feels differently when he eats than ever before, but hopefully it will all become familiar and pleasant again in a few months.
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