Tuesday

Tuesday was the only day I went in to my main place this week. I spent a lot of time sitting with a couple of patients. These two have conditions - permanent and genetic, that require treatment similar to that undergone by cancer patients, though they are not cancer. Thus these two end up on our floor. One is young and has dealt with her problem on and off throughout her life (PT A). Currently, she's experiencing a particularly long "crisis" proving stubborn to treatment. Otherwise, she's in fairly good shape. Among her problems is pain in her joints just one of the many possible complications from her condition. She's very personable and chatty, clearly animated and intelligent, and thus lonely and bored. She's part of a large family who visit frequently, but even with that, in a hospital one always ends up spending large chunks of time lacking in company. She asked for drawing and coloring materials, which I got from one of the social workers. We didn't get around to actually producing any art, instead we talked about stuff, family, life. What she did, where she lived, her family. My family, where we've lived. She was somewhat in pain, but totally ambulatory - in so far as one can be with an IV. Despite her discomfort and uncertainty as to how long this crisis would last, she was in very good spirits.

Now I know more about her condition, and the long-term prognosis, primarily a severely shortened life-span, her cheerful disposition is a lesson indeed. As is her determination to complete her Bachelors, progress on which has been curtailed by dealing with her condition. She talked about where she'd wanted to study, the same place her mother studied. This didn't work out, but she did start at a good, local institution and made progress toward her degree. She really wants to get back to it and complete it.

Her fellow-floormate is an older lady who, while burdened with a similarly unfortunate and genetically predetermined burden it is one that did not afflict her until much later in life (PT G). She's only experienced it for a year or so, but it's made rapid progress. She's in the position of having to come to terms with possibly having to rethink her entire life-style. Until fairly recently she was able to go about her daily life - a leisurely retired existence, while making some accommodations to this newly present discomfort in her body. However, her current predicament suggests that this may no longer be the case. She has already handed her beloved cat over to her best friend; this is very sad, since he was great company for her. She was no longer able to take care of him, since she can't open cans or shop like she used to. Her arms and hands are somewhat weak - I open packages for her on her meal tray, and while she was able to feed herself and cut up her own food, her dining was slow. She was talking at length at the same time, to be fair, and if I'd not been there for her to talk to, she'd have been somewhat quicker, though I doubt much. I think her weakness is largely due to not having eaten properly for a while and not being able to sleep. Her condition means she's at severe danger from bruising and bleeding from the slightest knock, and even spontaneously in fact. With this in your life it means you've got to be really careful about everything you do. Anything could cause a horrendous health problem. The poor lady had also just had eye surgery that will take several weeks to resolve itself. Then she'll see better; in the meantime though, it means she can't see out of one eye. This was also impacting on her eating speed since the bad eye was on the same side as her tray table where her lunch was. She didn't want me to move the table since that'd be on the wrong side for her right hand.

She had been in pain in her back and down both legs. She'd been trying to deal with it at home, but her OTC options are limited due to anything aspirin-related being off the list. This had been going on for a couple of days or so, during which she'd had a minor fall on one knee. She'd gone to her local ER and was sent home with pain-killers, well, a prescription for some at any rate, but one which she couldn't fill due to her pain and condition. Meanwhile, her injured knee had produced an alarming amount of bruising down the bottom half of that leg, with a "slipper" of bruising along the bottom of her foot, just above the sole. This looked rather alarming to me when I first encountered her, but then she explained why she was there and that it really had nothing to do with this dramatic bruising.

She told me what she'd been doing in her life. She'd worked in finance, and continued to work full-time to the last possible moment she could until retirement. Thus she ensured receipt of the best pension possible. She'd been retired for around a couple of years and had been enjoying pottering around her house with her cat, watching TV, and generally taking it easy. She'd had no grand travel plans and such, as many do when thinking of retirement, which, as she said, has proved fortunate given her current health situation. She'd been part of a drug therapy study from which she was removed when the drugs no longer worked - they'd provided a brief improvement, but this was not to last. She had then been undergoing periodic transfusions, which became more frequent, and were now weekly. And now she was experiencing this current crisis, which was indicating that her condition had exacerbated.

Sickle-cell and MDS: long-term prognosis for either of these is not great.

Another patient I'd been spending some time with, who'd been there for quite a while was not on the floor (PT AH). This lady had been visibly deteriorating and had been recently almost constantly asleep. I asked where she was and was told that she'd passed away Saturday night. This was expected, unlike the fellow who'd died the previous Monday morning. He'd seemed in fairly good shape, given the circumstances.

Around five patients that I've had some contact with, some brief, some lengthy interactions, conversations, have died since I started on this floor. It's proved a wonderful opportunity, prompt perhaps, to ponder various of life's questions but also chiefly one's role in the room with the patient. Constantly one remembers that it's nothing personal for you, that who you are is irrelevant, it's about being available for them. This can mean just being there, as a comforting presence, providing a foil for light, distracting conversation, or a sounding board for life-style readjustment, amongst many other things.

This is my last day for this week at the main place. Today I started out sitting with another patient that I've encountered a few times already. This lady is not well at all and has visibly deteriorated since I started (PT AH). I am told she is dying. She has periods of lucidity that appear like clouds clearing in an overcast sky. Much of the time she is very confused. Since she's confused, and, probably, lonely, she tends to call for the nurse repeatedly having forgotten that she did receive her medications or that she did get her breakfast (which she doesn't usually eat anyway). She will frequently get an idea fixed in her head that someone significant is coming to visit, such as her doctor, which requires "order" around her bed. She is summoning help to tidy her table, her stuff on the window sill, the floor. Of course, there is no one coming. She does not understand that the nurses or myself, nor indeed, the PCAs cannot mop the floor, that that is housekeeping's job for which they have all the equipment and products, not us.

I spent a little more than an hour with her this morning. I got her talking about what she used to do, where she lived. She'd been conservatory trained as a pianist and singer. She used to sing Schubert Liede and similar material, but as a professional she'd sung soul and all kinds of genres. She had an ex-husband, a jewelry designer specializing in pearls and mother-0f-pearl. I joked that she must have lots of pearls and she assured me she did. We then spent some time trying to find a particular watch she had, a famous name. I could not find it, despite rummaging through the drawers in her bedside cabinets, in the tray table, and on the window sill. She also asked me about cars. I said I didn't have one. She asked me, "What's the most famous car you have?". I threw out a few different kinds. Finally, she told me Mercedes-Benz. That was the car she had. She hadn't had one for a long time, then, finally she got one: a Mercedes-Benz 320. A silver one. She seemed extremely proud of it. She then invited me for a drive, assuring me that she "wasn't a Lesbian" but that she'd gladly go out one afternoon. I thanked her and said that it sounded lovely.

We then had a long talk about her phone, which had stopped working (presumably because it had not been paid for). She asked if I had a phone to which I replied that I did, but that I didn't have it with me. Then she wanted to give me her phone number: after I'd found her MetroPCS phone on her tray table and she'd explained that that did not work anymore either. I said, "Well, you could give me your number but the only phone you have that works is this one [the one on her bedside table], and I'm right here! So, it'd be a little silly for me to call you." She agreed, laughing at how everyone would think this terribly funny.

So, we talked a little more, while I tidied her tray table somewhat, throwing out various things, an opened pudding, tissues, packets of pepper, salt, that will never be used. "Finally, order!" she stated. Then I sat with her again. From time to time I put my hand on her arm, gently moving it back and forth. "That feels so good." I was told. Her skin seemed so dry, inspite of the fact that, I'm sure, the PCAs or the nurse rub lotion on it. This is a problem for skin stretched out with the swelling of edema. It all becomes so fragile.

While I was there her nurse for the day came to give her some medications. One really upset her stomach, sort of acid upset not nausea. It took a while for it to start feeling better.

Previously I've been in this room, with this patient and have noticed the trappings, such as they are, of an existence. A letter from a lawyer, notes to staff she'd written herself when she was in a better state than she is now. A newspaper or two. (When I came in to start with, she started asking me about purchasing a paper with some elaborate story about some fundraising effort or something about a building collapsing - something knitted together in her subconscious confounding assorted memories compiled in such a way as to make no real sense).

It is truly interesting and, indeed a profound privilege, to have this glimpse into an existence. Clearly this lady had been stylish and of "good taste" at some point. She has Mont Blanc pens, Dior make-up, her eyebrows tatooed (or pencilled in? I cannot tell), her nails done. A lawyer who produces stays of eviction notices. A mouse for a computer that was in her bag - which I stumbled upon while trying to find that "famous" watch (R & R), another thing she'd wanted me to find.

She told me where she lived. I asked if she had children and she said that she'd been too busy, that there was already so much dealing with herself that they'd not had any. That there was too much sadness in the world. Then, seeming to apologize almost, she explained that usually she is a positive person that she didn't usually dwell on such negativity. I suggested that wasn't there also a lot of good things in the world. Despite agreeing, negativity seemed to have it.

For some reason I had to leave. I don't recall why. I looked in on her later in the day: she was either asleep or gazing at the window, or her nurse was dealing with her. I didn't have the chance to sit with her again. Probably I'll see her next week and ask her more about her career in music, at least, I hope I get to.