Tag Archives: MGH

Day 38: Thursday, June 18

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It was an eventful day health-wise, both physically and mentally. PT came early and I got out of bed into the recliner. It was easier than last time. Later in the day I had two bowel movements sitting on the commode. It’s a much better angle than sitting on a bedpan.

The medical team stopped by in the morning and they tested the sensation in the toes of my right foot. I really don’t have any in the right foot, which I ascribe to peripheral neuropathy. I sometimes get total loss of sensation in my fingers that goes away after I massage them, but regardless they want to do an ultrasound to check for possible blood clots in my thigh and calf. They’ll try to fit that in for tomorrow.

Sharon, SLC’s Nurse Practitioner, stopped by to change the dressing on my left leg. It’s been a while since I had the surgery, and the incision seems to be healing nicely. Also, a tech, (Michael?) stopped by with a leg brace that he fitted to the left leg. I’ll actually be wearing it on the right leg, but because that’s still covered in bandages he can’t do it directly.

All through the day, when I close my eyes I’m quickly transported elsewhere.  Most of the time I’m surrounded by people looking down at me. It’s not consistent though. In one instance there are two techs in the room working on fixing a pump or something. Both 30s or so, a tall white guy and a short stocky black guy chatting to each other. I don’t recognize either of them. In another instance it was a woman sitting in what looked like a pink macrame sling. That third eye is really working overtime! On some occasions I open my eyes and I’m still in my room but the perspective has changed. I may be on the ceiling looking down on my room, or my field of view has changed – some things that are closer than they usually are, and other things further away. It’s not scary or anything, it’s just that everything has changed.

My one-armed room-mate was discharged today. I never saw him or talked with him through the curtain that separates our beds. They wheeled in someone who sounded lie he was heavily sedated. I found out later that he’s a young black guy who has some stomach issues. His name is Lavon and his mother has been staying with him. He’s not allowed to eat or drink anything and is on a drip. I talked to him one time when I my call light was out of reach.

Kathy and Dave stopped by in the morning. Kathy already had an appointment with a specialist who is managing her breathing problems with a procedure. It’s called balloon sinuplasty and may need to be repeated every year. Maureen and Miranda stopped by later. The room is pretty small and it was hard to find a place for everyone to sit. The Oura ring came yesterday and she’s now wearing it. It’ll take a few days of tracking before the data will have anything to say.

There’s a dumpy grumpy nursing assistant who comes in several times a day. I think she’s from Haiti or maybe Jamaica. She tidies things up, throws out the trash on the bedside table, helps a nurse change bed linen, and things like that. She’s always muttering under her breath about things that don’t meet her expectations. One time when Maureen and Miranda were here, Miranda, who had just stepped out came back into the room, she suddenly became all sweetness and light. Another time when she and the nurse were organizing the loops of the bed-swing to lift me out of the recliner back to the bed, she and the nurse were chatting with each other like mother and daughter – I asked them if they were, but no.

A couple of times today they gave me a morphine shot for the pain. It kicked in right away and I can see why you might get addicted. It has a totally different hallucinating effect than dilaudid or oxycodone. It was really nice and peaceful. It’s only a temporary measure though and they’ll stick with 20 mg of oxycodone – every 6 hours I think.

Asking the regular nursing staff to sign the card. Some of the ones who’ve signed it are:

  • Georgia (drew blood)
  • Payton (night nurse)
  • Molly (RN)
  • Meghan (nursing assistant)

I’m listening to a lot of music this time, compared with 20 years ago when I was in for cancer. Last time, in 2005/6 I discovered the Afrocelt Sound System. Right now I’ve just woken up and discovered I was listening to “Spring Frost” by Brian and Roger Eno. (Roger is Brian’s younger brother). I’d bought Ambient 1 on a whim shortly after it was released in 1979, but it really didn’t fit my mood at the time, and seeing that it was on vinyl I have nor been listening to it. They say that some music is better on vinyl, but I think this is a case when streaming is a superior option. It’s hard to ignore the music if you have to engage your brain in taking the record out of its sleeve, putting it on the platter, and setting the arm in place. Eno’s Ambient 1: Music for Airports came out either at the right time, or perhaps a little ahead of it. It originated the genre which has been taken up by many composers such as Hans Richter. I also used to listen to Stomu Yamashta who, although predating Eno, has incorporated the style as well. The music provides just enough form for the mind to follow, but by being ignorable helps the mind drift off to sleep. I’m using Apple Music (including Apple Classical) as they have a great catalog. I don’t like the design of the app as my fat fingers find it hard to bring up the search bar, and the ability to filter and sort is poor.

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Day 37: Wednesday, June 17th

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Woke up.

Happy birthday! It hurts today.

Pain right now is intense.

Starting to hallucinate.

–later–

Lots of pain in the morning, interrupted by spasms of even more pain. I used the Patient-Controlled Analgesia (PCA) device to deliver measured doses of Dilaudid[1] every six minutes, but that didn’t really work because I’d need more than the measured dose to relieve the pain.  For me, at least, the point where pain relief starts to kick in lags the time of taking the dose by more than six minutes. I’d find myself overshooting the total dosage needed and move into hallucination territory. I’d then start to actively hallucinate by seeing things: usually people that I didn’t recognize, but also the occasional angel or demon. At other times I would also phase out (like Mitch McConnell). For a few seconds I would not be present before returning to what, I’d assume was reality, but could also be to a different hallucination. Sort of like Chuang Tzu’s butterfly.

I spent the early part of the day in the PAC fighting pain. Later I was moved to a regular ward on the 6th floor of the Ellison building. The doctor and I discussed pain management and they agreed that I could take larger oral doses of oxycodone, up to about 20 milligrams, every few hours. The protocols for dosage and frequency are set by the doctor for how often a nurse can give me painkillers,  but these tend to be minimums; intervals will often be longer. Two reasons for the longer intervals: if I was asleep the nurse would not wake me to give me the pill. Second, most painkillers, including oxycodone, dilaudid, and morphine.  are Central Nervous System (CNS) depressants which result in a drop in blood pressure. If my systolic blood pressure was under 100 the nurse would not give me the painkiller. The diastolic pressure does not seem to be an issue.

MGH Operative Note.061526Download

[1] They gave me Dilaudid even though I’d listed an allergy to it on the grounds that last time when fighting cancer it gave me hallucinations. In fairness though, it seems that I’m quite susceptible hallucinations as I found later that I got them with sufficiently high doses of oxycodone.

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Day 34: Sunday, June 14

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I woke up in recovery in the Post-Acute Care (PAC) facility at MGH here. Disoriented of course. My throat was dry and my arms hurt. Not a lot of pain in the leg because of the nerve block. SLC stopped by and told me that the lesion was benign and therefore they just scraped the lesion and put a metal cap over the  area, screwed into the bone. Maureen and Miranda came in and stayed with me for about an hour. She said I looked pale. Nurses were great, stopping in every few minutes to check up on me. Relieved of course that it was benign and that they didn’t need to cut any bone out. SLC says it would be very unusual if the lesion on the right leg was any different to what was on the left leg. It’s still going to be a major surgery.

MGH Operative Note.061126Download

Moved from the PAC into a regular ward. I have a bed in a double next to the windows where I can look out on a mass of grey pipework and air conditioning units. The occasional sparrow flies up to the window. I can see a small tree fluttering in the wind, growing on what I think must be a balcony above. The nurses in the ward are, for the most part responsive, although there was an initial problem with my call button. The room is a bit stuffy.

The first day I had a roommate who was only here for a few hours. He left without completing the discharge. Followed the next day by another patient. I don’t know what he was in for as he was quiet and wanted the door closed, which made it even more stuffy in the room. The temperature in Boston has been in the 80s. After he was discharged, and later in the evening of the second day here, I got a third roommate—young guy—sounds like  they’re going for some major spinal surgery.

Watched two games of the World Cup so far. The first one, USA versus Paraguay, I watched on my phone. The US exceeded my expectations with a 4-1 win. I then started a Fubo subscription to watch Scotland versus Haiti on my laptop. Scotland were lucky to win, I think. Haiti came so close to scoring in the second half.

They’re still working on identifying this specific malignant cancer. There are two possibilities:  Chondrosarcoma, for which no chemo will be needed. The second Chondroblastic Osteosarcoma for which chemo will probably be needed.

I wrote an update “One step at a time”  about my first surgery to send out to friends and family.

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Day 22: Tuesday, June 2nd

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Got up into the chair this morning and read some more of my book “Gardens.” I played the garden simulator on the Switch. I’m making some progress in the game, I planted eggplant and mugwort.

Later in the day the results of the MRI were posted. As expected, it confirms that something is amiss in both legs.

MRI Tibia and Fibula (Right) – June 2, 2026

I messaged SLC and later got a call to set up a virtual appointment tomorrow at 9:00 AM. Here we go…

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Day 18: Friday, May 29

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Up at 4:00 AM to ride into Boston for the MRI. Stopped at Dunkin’ to pick up a preordered breakfast, and on the road by 4:45 AM. Very little traffic at this time of day, made it to MGH by 5:30. Maureen dropped me off at Yawkey,  parked, found a wheelchair,  and wheeled me over to the main wing and Ellison section. But of course it wasn’t open yet since the appointment was for 7:00 AM. Coffee, and chattered with a couple in the waiting room from Manchester New Hampshire.

I had two MRIs scheduled. There were two copays at $350.00 per MRI. The note from the radiology conference reads:

“Discussed patient in radiology conference and recommend right tibia MRI with and without contrast given the cartilaginous lesion with scalloping and signal on PET. MRI right tibia through the right distal femur lesion ordered. Left femur MRI ordered for left femur lesion on PET.”
Signed: Mattie Elizabeth Raiford MD Orthopaedic Oncology Fellow.

The techs were helpful and got me on the table. Roll cushion under knees, feet strapped together, weighted cover on abdomen and strapped in,  ear plugs, and an emergency button, just in case. I ask for something to cover my eyes. Their Spotify playlist is down so I’ll just have to deal with the clicks, whistles, whirrs, thumps, and so on. I’ve had MRIs before so I know what to expect, but this was a long one! Every now and then the table moves out and I wonder if it’s over, but no, the tech says something that I can’t hear because I’ve got ear plugs in. The table moves back in for more clicks and whirrs. I’m curious as to what is actually happening inside the machine to cause it to make the sounds. Sometimes it sounds like an overloaded washing machine.

I practice my best relaxation techniques in my mind.

’Twas brillig, and the slithy toves
      Did gyre and gimble in the wabe:
All mimsy were the borogoves,
      And the mome raths outgrabe.

“Beware the Jabberwock, my son!
      The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
      The frumious Bandersnatch!”

He took his vorpal sword in hand;
      Long time the manxome foe he sought—
So rested he by the Tumtum tree
      And stood awhile in thought.

And, as in uffish thought he stood,
      The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
      And burbled as it came!

One, two! One, two! And through and through
      The vorpal blade went snicker-snack!
He left it dead, and with its head
      He went galumphing back.

“And hast thou slain the Jabberwock?
      Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!”
      He chortled in his joy.

’Twas brillig, and the slithy toves
      Did gyre and gimble in the wabe:
All mimsy were the borogoves,
      And the mome raths outgrabe.
  • Reciting Jabberwocky inviting visualization of each word.
  • Diaphragmatic breathing. Inhale through the nose for four seconds keeping chest still and tightening the diaphragm. Press lips and exhale for a count of eight. Repeat 10 times. “one two three four, one two three four five six, seven eight. Two, two three four…”
  • Reciting the alphabet, with and without numbers.
    • One-A-A-One, Two-B-B-Two, Three-C-C-three, …
    • Visualize the letters and numbers as I do this.
    • Repeat backwards from Z to A.
  • Move attention in my head in different directions and hold for a few seconds at each position: right, middle, left, up, down, forward, back, in, out.
  • Focus on the machine noise to the exclusion of everything else and let it envelope you.
  • Empty mind and invite visualization. Could be patterns, comma, faces, scenery, but don’t try to identify what I’m seeing.

An hour later, the table comes out and they sit me up to insert an IV of gadopicienol. Wikipedia says it’s a “paramagnetic macrocyclic non-ionic complex of gadolinium” and that “Above 20 °C gadolinium is the most paramagnetic element.” Back in again. It feels more uncomfortable this time – not horrible, but noticeable, and it seems to be generating some heat.

At long last the procedure is over. I haven’t moved more than a millimeter for an hour and a quarter! It’s over, and we don’t have any more appointments for a while, so it’s back to the car to return home and have lunch.

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