Mary Lee Coombs

Monday afternoon Nancy Petersons and I were with Mary Lee for about 90 minutes. Nancy had been told by a nurse that Mary Lee's condition had significantly changed since Saturday. She is experiencing periods of agitation and distress, and reduced ability to communicate. This morning (Monday) Mary Lee had been very agitated, and that she had been given some drugs to calm her: Ativan, a fairly mild and commonly prescribed drug for anxiety and insomnia, and Haldol, a very strong drug usually reserved for extremely agitated people. My understanding is that Haldol can profoundly "flatten" emotions, which may make it even harder for us to connect with Mary Lee. It was unclear to me whether the agitation was a symptom of the illness, or her extreme frustration with her situation.

Mary Lee remained very soundly asleep during our visit. Even when the fire alarm went off, she didn't stir.

While we were there, a doctor came by and he was very open in answering our questions and discussing Mary Lee's prognosis with us. He said we can likely expect her condition to deteriorate rapidly. She may show a variety of behavioural changes including loss of memory and lucidity. He said that the agitation could be a result of her condition impacting the emotional control and response portion of her brain. He said she may be in the final weeks, or week, of her life.

[Nancy and Steve co-authored this entry]

I saw Mary Lee earlier today and thought I'd let readers know how she's doing. Essentially the description I gave in the first post still applies, only more so. Her mind is as sharp as always and she can hear perfectly well, but her motor control has worsened including her speech and her ability to eat. I'm not sure how her vision really is, but she does watch television and her DVD player. She's sleeping even more now as she tires more rapidly.

She is extremely frustrated with the difficulty of communicating. Today I was trying to understand something she was trying to tell me, and I could tell that it was something simple but I just wasn't getting it. At one point she said (and this I understood clearly) "this is stupid!" I agreed that it was, and in a little while finally managed to figure out what she wanted; she had to spell out a key word for me because she couldn't say it clearly enough for me to understand it. I apologized for being so dense and said I would get the hang of it (hoping that I would).

The trick to communicating with Mary Lee is to set the context yourself and then you have a chance at understanding what she says. Yes-and-no questions are the simplest example. At one point the nurse asked her whether she wanted the TV on and she said yes, and then asked "what channel?" and Mary Lee held up three fingers and then one finger, meaning channel 31. That was a smart thing to do because if she'd said "thirty-one" we might not have had a good chance of understanding it. She can often pronounce words more clearly if she puts more effort into it, but she's weak, and in addition thinks that the whole situation is ridiculous. So she may repeat something more carefully and have it be understandable.

I cried today while visiting her, for the first time. For some reason I said "it's not fair" and she said (and I was able to understand this without trouble) "Life is never fair."

Bloglet is the system that keeps you informed by email if you've entered your address in the box at the top of this blog. It seems to work pretty well, but I've noticed that it doesn't display titles, blank lines, and other stuff, presumably to give you as compact an email as possible. I don't think that's a good feature for this particular blog, so I've changed Bloglet's settings: from now on it will just tell you that there are new post(s) and give you a link to click on to see them.

Sylvie's suggested that we create an online photo album that could be shown at the party (someone will bring a laptop and perhaps also a projector). If you have digital photos of Mary Lee that you'd like to share, please email them to me at 1@sympatico.ca . (If you have printed photos you can convert them to digital form by scanning them. If you don't have a scanner, most cybercafe-type places will let you use a PC and scanner for a minimal charge.)

Since the party is just around the corner, it may take till after that to collect a reasonable number of photos, in which case we can wait to show her the album.

From Mary Lee's friend Laura: "We’ll group in the lounge and visit ML in small groups. She has requested a certain cake, which I’m making, and I think we could use a couple of bottles of champagne. I’ll bring glasses, plates, forks, etc."

So when you enter the Inpatient Palliative Care unit (4th floor, Queen Wing, St. Michael's Hospital), turn left and walk down the corridor most of the way until you reach the lounge, which will be on your left and has a piano just inside the door.

Again, this will be on Mary Lee's actual birthday, Tue. Feb. 28 (i.e. the Tuesday coming up), from 5 to 7.

I'll bring some bubbly, both alcoholic and not. (I don't know what the rules are about alcohol so that part may not be usable.)

Please keep in mind that we'll need to keep it quiet. Also, a general reminder: whenever you enter the hospital be sure to use the antibacterial hand-washing stuff available just inside the entrance.

From Mary Lee's friend Sylvie: next Tuesday, Feb. 28, will be Mary Lee's birthday and there will be a birthday party at the hospital from 5 to 7.

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In late December, Mary Lee Coombs noticed some numbness in her right arm. Shortly thereafter a friend remarked that something seemed wrong with her face. Within a few weeks the numbness had extended to her right leg, affecting her ability to walk, and she went to St. Michael's Hospital to get checked out. She was admitted and the investigation began. Her symptoms were consistent with a problem at a particular place in the brain, and indeed an MRI scan showed a spot there. A later MRI scan showed the spot as having become larger. Meanwhile she developed double vision and her speech became significantly affected. Her right side became almost useless.

A disease called PML, Progressive Multifocal Leukoencephalopathy, was suspected, and eventually the "JC" virus which causes PML was found in her cerebrospinal fluid, pretty much confirming PML.

Information about PML can be found here. The bottom line is that it destroys white matter in the brain, impairing the transmission of nerve impulses, causing "weakness or paralysis, vision loss, impaired speech, and cognitive deterioration". So far Mary Lee is suffering from the first three.

According to the U.S. National Institutes of Health, "There is no cure for PML, nor is there currently an effective treatment for the disorder." It usually just gets worse and worse, and quickly. "The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset, but there have been a number of reported cases with survival for months to years."

PML attacks only people with weakened immune systems. Several years ago, Mary Lee was diagnosed with chronic lymphocytic leukemia (CLL), a form of blood cancer. If you didn't know that, it's because she kept it fairly secret. The median lifespan from diagnosis was seven years, so for some time now she's been aware that her life would likely be cut short. She's had a number of rounds of chemotherapy (a mild form without significant side effects), which were successful in keeping the leukemia in check to date. But evidently her condition allowed PML to develop.

Mary Lee is still at St. Michael's Hospital, and has just been moved to the Queen Wing, 4th floor, Inpatient Palliative Care, room 4007 a.k.a. 407 (there are two rooms from one doorway; it's the one on the right). If you wish to visit her, please bear in mind that she can't speak very well, which makes normal conversation impossible, and that her vision has been affected a little (but her hearing is fine). Also, she sleeps a lot so there is no assurance that she'll be awake when you visit. Visiting hours are 11 to 7. On weekends, at least the afternoons, there tend to be quite a few visitors, which tires her out and in any case makes it difficult to have much of a personal visit, so I recommend visiting on weekdays instead if possible.

If you have a message for Mary Lee, please email it to me at 1@sympatico.ca and I'll read it to her at my next opportunity.