February 23, 2000 -- Another Trip to Boston
Hi everyone!
We went to Boston yesterday for our final visit before admission. We were smart enough to go down Tuesday night so we'd be rested and not be getting up at 4:00am to drive down!
We had 5 appointments scheduled. It seemed like a pretty doable schedule, but boy, did we have a busy day! We started out having breakfast with Jaimison (that wasn't one of the appointments -- that was our fun part of the day!). We arrived at the hospital for a 10:00 appointment with the radiologist. This appointment was at Brigham and Women's Hospital, where Dave will be admitted for this event. We met with 3 doctors, and they explained what the purpose of the radiation is, what the possible side effects are, and what precautions are taken to make sure Dave won't be hurt in the process. We then met with the woman who actually administers the radiation. She was a very nice woman, and told us not to worry, she'd take good care of Dave.
For these procedures (he'll have 7 radiation treatments over 4 days), he'll lay on a table that has one radiation thing (that's a technical term) above it and one below it, which will do their thing while he just hangs out. They told us most people fall asleep during the treatments. The radiation will kill off all the white blood cells in Dave's body so he can build new ones after the transplant.
From there we made our way back to Dana Farber for an 11:30 appointment with Dr. Soiffer. He walked us through the two types of transplants again, answered our questions, asked some of his own, then had us sign a consent form. We hung out for a while waiting for him to come back (which he didn't), then left to go to our next appointment. In the mean time, Dave went and gave yet more blood for testing!
Our 1:00 appointment was at Beth Israel Hospital, where Dave had X-rays done so they can make these things called Lung Blocks. They're actually little lead plates, about 6 inches long and 2 to 3 inches wide, and sort of lung shaped, which will be placed over Dave's lungs while he receives the radiation treatments. They looked really small when the radiation woman showed them to us, but she explained that when the radiation is beamed into Dave's body, it acts much like a flashlight beam, in that it expands, or gets wider, the farther it is from the machine. The shadow created by the lead shields also expands, so the little piece of lead is enough to block his whole lungs. Lung tissue is more susceptible to damage from radiation than most other tissues, so that's why they take these special precautions.
While Dave was at that appointment, I met with a Resource Coordinator who is helping me find a place to stay while we're down there. He was a great guy. We walked over to a house that's across the street from B&W, call the Patrick Thompson House (named after a former patient). We couldn't do a tour of the inside, but he did tell me all about the place. It's got 3 bedrooms, a shared bath, kitchen, living room, dining room and sitting room. I'm on the waiting list, and keeping my fingers crossed that I can get in there. It would be really nice to be right across the street. The two other places I'm on the waiting lists for are 6 or 7 blocks away. I'm not too excited about the prospect of walking back there at night. So for all of you out there praying and having good thoughts for us, direct those energies toward getting me into the Patrick Thompson House!
Dave was smart enough to grab a piece of pizza before our next appointment, which was with the social worker. Another really nice lady. She talked to us about support options available to us. There are lots of programs for patients, but not as many for family and care givers. There is a family support group that meets on Wednesday nights, so I'll be going to those. She also told us she would be available to us at any stage of the process, from now, before Dave's admitted, to after his release and we're back home here. She wanted to make sure we knew that the care and support they offer doesn't end when we check out. That's a nice feeling.
When we were finished with that appointment, she paged our nurse Mildred to let her know we were ready to meet with her. I took the opportunity to race down to the cafeteria (which was in the process of closing) and grab something to eat -- it was either Legal Sea Food Clam Chowder or a cold, refrigerated sandwich. Hmm, let me think about this! Anyway, I raced back upstairs with a bowl of chowder and scarfed it down while we were meeting with Mildred. After that she took us on a tour of the transplant unit.
The unit is broken up into what are called pods. There are 4 pods on the 6th floor, and 2 on the 7th. She took us first into 6A. This is a pod set up to function as an ICU unit. Patients who may need critical care services after a transplant are put in this pod. They have all the life support equipment to handle any emergencies that might arise. That way, they don't need to take a patient who needs to be in a sterile environment out of that environment to provide care. I wasn't too excited about this pod. The patient rooms are small, and have no door. Instead, there is a plastic curtain that can be pulled over to separate the patient from the common area. There is also a fabric curtain that can be pulled over to provide some privacy.
The other pod we visited was 6C, which was better. The rooms were larger and had real doors with a shade that could be pulled down. The common area was similar to 6A, but there weren't quite as many machines since 6C isn't a critical care unit. While we didn't see 6B or 6D, they're supposed to look like 6C. All pods feature HEPA filtered air that is pressurized so that when the doors into the unit are opened, the air blows out, minimizing the amount of air being let into the unit. Dave will be able to leave his room and walk around the common area of his pod, but won't be able to go outside it. He'll need to wear a mask and gloves when he ventures out, and anyone going into his room will need to put a mask and gloves on.
After that, we made our way back to Dana Farber and met up with Jon, who was also in town for tests and to find out what he's really getting himself into. We all talked with Mildred for a little while longer, then decided we'd better get going to the airport to bring Jon back. It was 5:00, and rush hour traffic would be building, and we didn't want Jon to miss is flight at 7:15. If you've ever driven in Boston's rush hour traffic, you know it could take 2 hours to get to where you're trying to go. Fortunately, we beat most of the traffic and got to the airport with enough time to have dinner with Jon before we started our respective journeys home.
So that was our day in Boston. This trip was much less scary and nerve wracking than the last one. The environment was familiar, the people were familiar. We feel good about the care Dave will receive, and the support that will be available for me. And I made Jaimison promise to take me on the "T" so when I have to take it alone, I won't look like a tourist!
So that's about it. I'll save the story about bailing out our flooded driveway at 11:00pm for another time.
Hope you're all well.
I'll talk to you soon.
Allison