Went into MGH Boston for an appointment with SLC. We checked in and discovered that I was not scheduled for an X-ray, so we were prepared to hear that the brace had to stay on for another four weeks. It sounds as if I’ll be getting an AFO (Ankle Foot Orthosis) or at least something that will allow me to bend my knee. That’ll be a relief, and it’ll mean a whole new set of exercises to build up the muscles that have been atrophying all the time my leg has been in the brace.
Last day at MGH. Slept ok for a couple of hours, but nurse came in to check vitals, and my blood pressure was low: 83 over something. She paged the doctors, and later, around 2 am, came to set up an IV of saline for hydration. Vitals at 4 am showed blood pressure back in the normal range. Eagerly awaiting news of when they’re going to transport me to Spaulding.
News came that they’d transport me at 12:30, and Jonathan, the driver with an impressive mustache, showed up right in time. I’ve been at MGH this time since July 16th, over two weeks, and gotten to know many of the nurses, PCAs, doctors and NPs quite well. They’ve been marvelous. I am impressed with how well they interact with other patients as well. No Nurse Ratchets here!
Arrived at Spaulding via chair ride and wheeled up to my room. Oh Joy! It’s on the 5th floor, single room, with a stunning view of the harbor!
Talked with the doctor who checked me in and completed the MOLST form, so that’s another To-Do checked off. They seem to be leaving me alone for now. Rehab starts tomorrow at 9 am, according to the schedule on the TV. Strange User Interface. Firstly, you can’t turn it off. Pressing the OFF button on the remote merely causes the main window to cycle between screens, without turning off the display. Secondly, there are windows both at the bottom and right of the main screen, but the taller windows on the right have unused real estate, whereas the shorter windows on the bottom you have to scroll. Seems like a poor UI design. Hopefully I won’t be here for V2.0 to be released!
Talked for a while with the PCA Mary Ann who brought me a cup of tea in evening. She’s from the Philippines, so we had an instant connection when I told her about Miranda’s two years in the Peace Corps and our visit there. We talked about family mostly.
Making progress with PT. Did a session with OT getting out of bed into walker, and getting out of chair into walker. And no more commode! Got into wheelchair with PT while Maureen was here, and took a wheel around the ward. Getting better at getting into walker, but still need a helper. NP Sharon from the ortho team stopped by. We discussed the low blood cell counts – I’m chronically anemic which is not unusual, but she’s ordering tests and that’ll tell us if I need to go on an iron supplement. She also removed the Ace wrap off my left leg and got me a new boot for the right foot. I had an MRI of my right arm, Tomorrow is the day for surgery to put in the port, and I’ll be NPO until after the surgery.
I checked the portal and I see I’m scheduled for a hospital visit to 300 1st Ave., Charleston – i.e., Spaulding. Looked at the BCBS portal to confirm and I see Spaulding is approved August 1-7. Yay (I think) Hope I get a view of the harbor!
I completed updating my blog with entries from 2005/6 when I was being treated for Burkitt Lymphoma at Brigham and Women’s Hospital in Boston. I rearranged the menus a bit and shared the link with my small group of correspondents. I am pleased that some, at least, have taken me up on it.
I talked with Dr. Edwin Choy, director of the Sarcoma Oncology Center at MGH. He gave me the basic spiel about osteosarcoma and the limited progress made over the last decade. I would be getting adjuvant chemotherapy (adjuvant means a treatment that helps improve the effectiveness of a main medical action, such as surgery). I get the sense that he is not yet read in on my case. He knows I had Burkitts, but not the specific chemotherapy regimen. It turns out that, even though it was over 20 years ago, there’s a lifetime limit to the amount of certain drugs that my body can tolerate. Lozano is sure that he got all the infected bone and that it had not metastasized, so perhaps the treatment will be “watch and wait” versus immediate chemo. Choy knows my oncologist at B&W, Dr. Eric Jacobsen, as well as Dr. Eddy Chen, my oncologist at Emerson. My hope, although we didn’t discuss this, is that any infusions could be done at Emerson’s Naka Infusion Center.