Health Status: Thursday, June 4

Hello, World! I want to give you all an update on my health. Leading up to a fall last month when I broke my leg, I was already seeing a specialist for an issue of leg pain. We finally have a diagnosis and a treatment plan for the underlying issue. It turns out, after multiple tests, that both legs and knees have significant bone and cartilage lesions that must be removed. I will be going in for my first arthroplasty surgery on June 11th at MGH. I don’t know when the second surgery will be, but probably as soon as the first surgery has healed sufficiently. Needless to say, all this is going to take a while, but hopefully I’ll be back on my feet sometime in September. In the meantime, I am currently at home being well looked after by my wife, Maureen, supported by our good friends and neighbors in Stow. I’ve also been talking every other day with our daughter Miranda in Sacramento. The next few months are going to be rough for all of us. I have plenty of books to read, games to play, movies to watch, and music to listen to. Many of you will know that I was diagnosed with lymphoma back in 2005 and was laid up for months. I came out of that OK. My spirits are good, and I am confident that with the great doctors in Boston we’ll get through this as well. Drop me a line if you want to chat.

Maureen’s contact info is: [email protected] | 978-793-0970

Day 23: Wednesday, June 3rd

Had a Zoom call with SLC up in the bedroom. Maureen and Trixie were here. Bottom line: it’s an aggressive tumor, probably malignant, but not metastatic, in both legs. Rather than do a biopsy before proceeding he recommends surgery as soon as possible. He will do one leg at a time. The term is arthroplasty and it’s a major surgery involving replacement of the infected parts of the knee, femur, and tibia with metal parts. It sounds like four to five days per surgery, although whether immediately sequential I don’t know.

Assuming success, I can be up and about in the fall. Success rate? Risks? Potential complications? Hard to say, it seems like it’s worth a go. If I expire during surgery then that’s OK for me too, I guess. Not so much for Maureen and Miranda. It’s going to be interesting to find out how much all of this is going to cost!

The first surgery is scheduled for June 11th, so they cancelled the appointment for MGH on the 9th. I do have to have another MRI though, this one is scheduled for the 7th. I also have to have a bunch of tests.

In preparation for surgery I bought a Kindle. Curtis and Lori also lent me a pair of Bose headphones, so I’m way better prepared for hospital than I was back in 2005 when I was being treated for Burkitt’s Lymphoma at Brigham and Women’s. I also feel better than I did back then. Wonder how long that’ll last!

Day 22: Tuesday, June 2nd

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.

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

Day 21: Monday, June 1st

Maureen brought the wheelchair up to the bedroom and I sat up for a good part of the day. It was nice to be able to get out of bed for a change. Idid some more WordPress, figuring out how to embed from another web site and how to do an RSS feed.

Care package arrived from Miranda and Devin containing amongst other things:

  • A Nintendo Switch and garden game
  • A T-shirt saying “I was fighting a bear” (implying that was how I broke my leg).
  • Some pretty lanterns from Devin’s trip to Vietnam to visit his parents.
  • Some Vietnamese goodies (coffee, tea flavored egg rolls, candy)
  • An egg cup (of course!)
  • A bell! (Maureen immediately hid it.)
  • Some THC gummies for Maureen

I got the game charged up and called Miranda to find out how to play it! We talked for a while.

Day 18: Friday, May 29

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.