Monthly Archives: August 2026

Day 89: Saturday, August 08

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I went to sleep early, around 9:30 pm. I was exhausted from a hard PT session yesterday with the two therapists: Zaya and Tori.

  • First, I had to walk (with my walker) for six minutes straight.
  • Then, I had to walk a fixed distance (~60 ft there and back) as fast as I could
  • Then they had me transfer from the chair to the floor, via an intermediary level
  • Slide over and bump up and down some steps
  • Transfer back to the chair

It was a lot, but I managed it, except for the transfer which they had to help me with.

Today, being Saturday, I see I have no OT or PT sessions scheduled, which should give me time to recuperate. Tomorrow, Sunday, I have a single OT session scheduled. It all starts up again on Monday.

Martha and Charles visited yesterday. They brought me a large bag of Liquorice Allsorts, and a bag of Jelly Babies. We talked about Charles and my experiences being brought up British. Charles came over in 1968 as a small child so doesn’t have many memories of England. His father was an engineer and came over as part the “Brain Drain,” as the exodus of technical talent to the US was referred to at the time. However, since others from his father’s company came over at the same time, Charles found himself as part of a British ex-patriate community. I was Charles’s reference for his gaining his British passport recently, and he’s thinking of visiting in the next few months. I asked them if they’d heard of the upcoming by-election in Clacton, where Nigel Farage (boo, hiss!) is running as the Reform party candidate. The Lib Dems, Tories, and Labor are not competing, but a whole slew of joke third party candidates have paid their £500 deposit to be entered on the ballot; amongst them Count Binface. He probably won’t win, unfortunately, but such is the backlash against Farage that he’ll probably get more than 5% of the vote1 and his deposit back.

Maureen got here at 11 am, by which time I’d already gotten up, been to the bathroom, got dressed, and in my wheelchair. We went outside and she pushed me around the outside of Mayor Menino Park, jutting out into the channel that connects the Mystic River with the inner harbor. It was already in the upper 80s and sunny, and I wished I had my hat and sunglasses! It was good to be outside, the first time since May when I attempted a bumpy ride in the backyard to the greenhouse and back. I would love an all-terrain wheelchair, but they’re vey expensive and not covered by Medicare. And anyway, since the end goal is that I be able to walk under my own steam, it’s not worth it. Back inside, we took a tour of the facility, looked at the swimming pool through locked doors, and visited the gym, stocked with all the toys that a therapist could wish for, and more..

Better not be any more bears around here!

Back in my room, I ate lunch and got back into bed. After Maureen left, I realized how tired I was and fell asleep for a bit less than an hour. Google showed me that I immediately fell into a deep sleep for 20 minutes.

  1. Binface received 26.9% of the vote while Farage won 63.3%. Binface had his highest share yet with 9,455 votes, having lost to no fewer than three prime ministers, and one who later became prime minister, in previous attempts. ↩︎

Day 86: Wednesday, August 05

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Not a great sleep. My bad back kept me awake. Only 72 on the Fitbit, but I did manage 40 minutes deep sleep, which is typical. Had OT first thing this morning; more about transferring and using the shower chair. An hour’s break and then it was PT with Chris. I really appreciate him; he listens and has good ideas – it’s not just cheerleading. He’s a recent graduate from the MGH Institute, but I’ll bet there’s a lot of competition to get a position here. We did some walking, using the newly allowed weight bearing on the right leg. It’ll take some time to get used to the new rhythm, and surprisingly, to me at least, I was panting after a mere 30 ft – the same distance I was doing yesterday with touchdown weight only. At least the right leg didn’t hurt. I think the reason I was panting was because there are muscles in the leg that haven’t been used at all since I broke it. I was quite exhausted by the time I got back to the room and dozed most of the time Maureen was here.

I now have a projected discharge date, August 15, which would make it a mere two weeks since I was admitted. In which time I have to demonstrate that I can navigate the stairs, use the bathroom unassisted, etc. At the rehab conference yesterday, OT and PT summarized where I am relative to where I was on admission. It shows some changes, but I need to show a lot more if I am to be discharged as planned.

OT Functional Report (blank is not assessed or needed)

MetricAdmissionCurrent
TransfersModerate assistance(P) Contact guard
GroomingModerate assistanceModerate assistance
ToiletingModerate assistanceModerate assistance
Toilet TransfersModerate assistanceModerate assistance
TransfersMin assist to left x 1Min assist to left x 1
Upper Body DressingWith set upWith set up
Lower Body DressingMaximum assistanceMaximum assistance
Tub/Shower TransferUnable to assessModerate assistance
Bathing/ShoweringMinimum assistanceMinimum assistance

PT Functional report (blank is not assessed or needed)

MetricAdmissionCurrent
Rolling RightIndependentIndependent
Rolling LeftIndependentIndependent
Supine to SitModerate assistMinimum assist
Sit to StandModerate assist, Minimum assist (mod A x1 plus min 2nd from w/c , min  x1 from edge of bed) x 2Minimum assist x 1
TransfersMin assist to left x 1Min assist to left x 1
AmbulationContact guard x 2 (2nd person for close w/c follow)Contact guard x 2 (2nd person for close w/c follow)
Assistive DeviceWalker – rolling, Other (Comment) (close w/c follow)Walker – rolling, Other (Comment) (w/c follow due to short distances)
StairsUnable to assess (Comment) (unsafe-pt unable to perform task) x 1 Moderate assist x 1
WheelchairIndependentIndependent

Had my long-awaited video call with Dr. Choy. He was 40 minutes late for the call, but at least we had it. He went over the tests to date. Delighted that I’d already had the heart ultrasound and the port implant. The MRI on my right upper arm was non-committal and he’ll need a biopsy as some point, but this can happen either before or after the chemo has started. He’s seeing a lot of necrotic lesions which is puzzling to him. According to Doctor Google “Necrotic lesions on bone mean that a part of the bone tissue has died due to a loss of blood supply, severe infection, injury, or underlying disease.” I had thought at one point that the tumor on the right tibia was a chondrosarcoma, but he assured me that it was osteosarcoma, which can be treated with a cocktail of Doxorubicin and Cisplatin. He’s constrained as to how much Doxorubicin he can used as there’s a lifetime limit and I had it before when I was being treated for Burkitt Lymphoma. Both sound pretty nasty. The good news is that the infusions can take place at the MGH Waltham facility, rather than here in Boston. With the chemo, he estimates a 50% chance of a cure.

PT this afternoon was curtailed because of the call with Choy. We did measurements of how much I could bend the left and angle the right foot. The session was not as exhausting as the morning session but left me in some pain, so I had the nurse give me the full 4 mg of Dilaudid.

Day 85: Tuesday, August 04

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Slept better. 82 for my Fitbit sleep score, with 1 hr. 44 minutes deep sleep. I saw that OT had a session with me at 8 am and wondered what that was all about. It turns out that it’s shower time. Wow! I haven’t had a shower for weeks. I realize that, bed baths notwithstanding, I must be smelling fairly ripe!

I had two PT sessions yesterday and three today. Spaulding has amazingly good therapists and their gym has all the toys. Today we did sessions working with stairs, walking (I can do about 30 feet at a time), isometric exercises for the legs, and weight machine for the arms. I had mentioned to the therapist, Tori (short for Victoria), that there was some confusion about whether I could progress to some weight bearing on the right leg or not. SLC had said a week ago that I would be able to be 50% weight bearing by now, but the ortho team had told Spaulding that I was touchdown only. Tori called up SLC, and they’re going to change my weight bearing status tomorrow. That’ll mean a whole new set of exercises, I expect. That’ll be exciting!

I am tired this evening, but I’m so glad I got into Spaulding. They don’t take everyone. I would never have gotten this level of therapy anywhere else. I’m already seeing improvements in how I use the walker to get up from a sitting to a standing position, and back, and in walking as well.

Day 82, Saturday, August 1

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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.