Well, here goes with what I hope will be a "Reader's Digest" kind of condensed dose of the information overload of the past 24 hours! I have an hour to condense it down while Ed is busy.....yes, watching The Factor on Fox. I've learned to tune out the sound of all that arguing over Pinheads and Patriots and especially the sound of Hannity........just too much audio chaos for me on a regular basis, especially at the end of a busy day.
The chemo is going well - they just started Ed on # 2 of 4 doses scheduled for this round at UCLA. He spent a good portion of the afternoon in radiology having an echocardiogram, an ultrasound of his right leg to check on the previously identified blood clots, and an x-ray of his heart - all part of the pre-screening tests that need to be done within 8 weeks of starting the stem-cell process. All painless but annoying procedures that we're trying to get done while he's already here and save a trip on the 405 Freeway next week. Tomorrow he may need a bone marrow biopsy, which can be pretty painful, but we heard about a nurse practioner here who is really good at it and very gentle, so we've requested her specifically. So far, Ed's counts are good and he's feeling pretty good, a much different experience than the past 3 chemos. Much more manageable and less anxiety filled.
I've been reading my big binder - which I've affectionately subtitled Stem Cell Transplants for Dummies - it's quite thorough and describes the process, the risks and benefits, the logistical details that need to be addressed and contains samples of all the consent forms, research links, support group info, etc. Kind of a "What to expect when you're expecting" type of guide to the world of stem cell transplantation. We have about 5 weeks before the intense activity begins and then it will be pretty intense through the end of summer. The stem cell retreival is done out-patient in a building next door to the hospital here and takes 3-5 days, about 4-6 hours a day on a machine that draws blood out of one arm, spins through a blood separator, spins off the stem cells, and then returns the blood through the other arm. We will have to drive here each day for that. Then he will be admitted and given super high-dose chemo for 5 days in a row, a day of rest and then the stem cell infusion, which takes one day. Then begins the waiting - about 2-3 more weeks - for the stem cells to engraft in the bone and start rebuilding his immune system. Once he passes the neutropenic stage and his counts are good for several days, we will be allowed to move out of the hospital, but will still need to stay close by UCLA for about 2 weeks - probably in a hotel or housing arranged by our case manager. They want patients to be within a 30 minute drive of the hospital in case he develops an infection and we live too far away in traffic. Then once we can go home, it will be 3-6 months for his immune system to recover enough for normal activities and about 6-12 months to get completely back to normal. A long haul for sure, but a worthwhile treatment and the only option for this type of lymphoma. We are lucky to live near a transplant facility - and for Ed to get into the program. They only accept about 200 stem cell patients a year! More details as I get more familiar, but that's the long and short of it for now.
Dr. DeVos came by today and told us that because Ed is eating more regularly, he is going to stop the TPN and see if Ed's digestive absorption is functioning at a level that will allow him to discontinue that for now. Yeah!!! They will know from his pre-albumen blood level how that's going, so Ed is very excited to have one less tether and tube.
Ed is ernestly eating his dinner so he can get to his dessert of chocolate cake and vanilla ice cream. The food service here at UCLA is an upgrade compared to most institutional food experiences. At any time of day, patients can peruse their "Signature Dining" Room Service guide where the "mission statement" is simply stated: Our goal is to provide you with healthful foods that also taste good. Our clinical staff is available to assist you in tailoring these items to your specific needs. A lovely greeting filled with such promise. The patient then presses a button on the display terminal of the room telephone labeled "Food Service" where you are connected to a "Signature Dining" wait staff member who notes your menu selections and confirms your excellent choices. (After all, this IS the Ronald Reagan UCLA Medical Center, but just between you and me, I'm pretty sure Ronnie and Nancy never ate here.) Your personal waiter delivers your food tray dressed in a modified tuxedo uniform complete with bow tie and cumberbund, sets the tray down and politely retreats from the room before you can raise the requisite plastic dome and confront a plate of neutral colored food that closely resembles the beige shade of upholstery in every government-issued fleet vehicle produced by GM in the 1960s. Adding insult to injury, the "Signature Chef" has added his secret spice mix of antiseptic dishwater and melmac to each food item just for your dining pleasure. I heard a rumor that Schilling is working on copying the formula, though I seriously doubt Emeril Lagasse is quivering in his cajun chef clogs! Needless to say, I firmly believe that were they to engage the services of an independent market research team, an unbiased committee of captive patients would demand a retraction of the menu greeting, citing false advertising. Delicious hospital food? A mission even the Navy Seals probably couldn't accomplish, and still holding a solid #1 spot on the Top 10 Most Elusive Things in the World list.
Signing off from my missive, which I hope has brought some insomnia or comedic relief to those of you "blogging" before bed.
Wow Liz you should be writing an op/ed column - I am tongue tied trying to read your blogs out loud! You have truly missed your calling. Perhaps you can cull all your blog posts and create a book entitled "How to keep a wife from going crazy during her husband's lypmhoma treatment - a guide to the serendipity" (see now you've got me started on waxing poetic!)
ReplyDeleteLove you guys, TC