9:15 AM Sunday, March 20, 2011

It's already Sunday morning and Ed just finished the 2nd dose of the 4-part chemo that he's scheduled to receive here at UCLA this trip.  My postings will be a little less frequent while we're here - UCLA has a wi-fi set-up that requires you to use their internet connection and it renders all others unavailable.  My laptop is set up with shortcut icons (thanks to our Lloyd's Plumbing technology wizard Anthony) that have made it easy for me to log-in and post, but now I have to track down a nurse's aid and get a log-in & password, etc. to get these postings up. 

Yesterday was filled with lots of getting acclimated - new staff, new surroundings, new procedures etc.  It's a big complex and a little intimidating.  Dr. Devos came in yesterday around noon - he was amazing.  Because UCLA is a teaching hospital the doctors here are used to spending lots of time explaining and "teaching" patients, interns, residents and "fellows" - the doctors who are in their final months of school.  He spent quite a long time explaining the mantle cell lymphoma, the various options available for treatment, expected outcomes, philosophical reasons for choosing certain protocols, and research trends and the future of treatments, etc.  Because we've had some time to digest some of the early information, it all made much more sense after talking with him - he put the pieces of the puzzle together in a way that formed a mental picture for Ed that he said he hadn't had before.  Even though there's a lot going on and Ed's really starting to feel the 4 walls closing in, he feels very well cared. 

Ed tolerated the second round of Rituxan pretty well, but he slept quite a bit yesterday and so was up a lot during the night last night.  He was really tired of sleeping in the hospital bed, so he had me sleep in the patient bed and he slept on the couch by the window.  I think he just wanted to feel a little normal.  He used our portable DVD player and watched a movie around 2 AM - DUE DATE was the movie, which he said to tell you all he didn't think was very funny.  (I'm happy that I slept in the patient bed off and on and not once did I wake up to find someone starting an IV or checking my blood pressure - they kept good track of where Ed was at all times!)  We did see a good movie on TV yesterday that we'd never seen before - "SHIPPING NEWS" with Kevin Spacey, Julianne Moore and Judi Dench.  Very touching story.

My daughter Stacy and son-in-law Gary came by yesterday from Valencia with their3 little ones and we visited for a little over an hour downstairs in the commons area and had a snack.  My 4-year old grandson Luke brought Ed 3 matchbox cars from his collection so Ed would have something to play with (a GTO among them!) and my 3-year old granddaughter Hope is learning to use scissors, so they cut him a bouquet of craft foam flowers with pipe cleaner stems and put them in a baby-food jar donated by little brother Cade.  It's adorable and brightens his room since he can't have live plants or flowers.  They also brought us snacks and drinks (we have a small 'fridge in the room) and Ed enjoyed a Ritz cracker, a few sips of Gatorade and a life saver.  Thanks Haggart family - for the treats and for making the drive!  It's a godsend to have food in the room since it's hard to my crdimypredict when will be a convenient time to go out in search of food.  Ed's "clear liquid diet" tray consists of a chamomile tea bag, cup of lukewarm water, the ever-present hospital jello, and a bowl of "broth" that Ed says would make even an Ethiopian turn up his nose! 

Ed wanted me to let you all know that it's a good thing we're married because I've now violated one of my cardinal dating rules, which have always been:  "Never date a man with better hair, bigger boobs or a smaller butt".  Ed says he may just have crossed the line with the butt thing, given the fact that he now weighs the equivalent of just over 62 kilos of marijuana.  (You all thought he was going to say the hair thing, right????)  Those are Ed's contributions for today.

Hopefully today, we will get a few things turned around.  Because Ed was off of his TPN for 36 hours while we transitioned into a new facility, when they put him back on the TPN, his blood sugar spiked to 265 and they had to give him insulin during the night.  They have adjusted the TPN schedule, and the tapering on and off times, so that should correct itself by this afternoon.  His red blood count dropped from 11.5 on Friday to 5.0 this morning, so he will be getting 2 units of blood in the next couple of  hours, then the next ARA-C chemo around 3 PM this afternoon.  It's a bit of an endless game of dominoes as each treatment sets up issues, they correct those, then those corrections set up other issues.  All of it has been anticipated, so we're not dealing with surprises, just circumstances that come with the territory.  They are well prepred and respond very quickly.  The diarrhea that had taken a 4-day vacation, has returned today, but the nurses are hot on the trail already with meds.  Ed is resting comfortably.  (It's 10:45 AM now - I have to stop typing frequently to respond to Ed and the endless procession of doctors, interns, nurses, lab people, pharmacists -who actually come to your room and discuss the meds!,  housekeeping, cafeteria, and paperwork people who come in, then I get "timed out" of the log-in and have to start over.)

Once they get the blood transfusion hooked up, I will go to the guest floor where I have to shower and change.  They don't allow any showers for patients or guests in these rooms - because of the LA River source for their water here, they have found bacteria in the airborne water mist, which is not a problem for a person with a healthy immune system.  But because everyone on this unit is receiving chemo, they have set up procedures to prevent the possibility of infection from that by instituting a "no showering in these rooms" rule.  Ed can take a bath, but a nurse's aid has to draw the water in the bathroom with the door closed and wait 5 minutes for the water vapor mist (steam) to be vented out before Ed can go in the bathroom and get in the tub.  Everything in the room is sanitized twice a day - they are pretty serious about keeping infection risk to a minimum.

Well, now it's 11:15 and Dr. Devos just came in.  Ed questioned him about the origin of this cancer and his answer was very interesting.  He explained about the immune system and how it sometimes makes "mistakes" when trying to make anti-bodies to fight off foreign bodies (infections, viruses, etc.) as well as the suspected toxicology component for this type of cancer.  Research hasn't identified a very specific source yet, but they suspect that benzine components, radiation and some pesticide ingredients are likely at the center of most cancers, but more research is needed to determine exactly which ones, in what quantity and when present with what other factors do they manifest into a cancer like this one.   It's still a mystery, but they are getting closer to finding out the answers. 

Ed is back to sleep after the doctor visit, so I'll go shower now.  I'll let you know how he's doing later today.