Dina's notes on visit with me during 7th cycle

I arrived a little after one, but didn't see you for another 20 minutes or so--you were MIA on the floor and the transport coordinator didn't even know where you were. The mystery was solved when we found you coming down the hall after having sneaked off to the PT room to do some biking. I met your mom who was also visiting. We talked about the unbelievable accommodations on the 9th floor and what you have to do to get there. I gave you an open bag of candy (I just had to try one!) that you shared with your mom.

We went back to your room and talked about the current drugs you were on, both the chemotherapy and the ones to manage side effects, and you talked about how you're refusing some of them, hoping to cut down on the chronic dopiness. We compared catheters, since I was contemplating switching to your kind (although I think I've since decided to keep mine for a couple more months). Your sister-in-law called and both you and your mom talked to her. Your doctor stopped by and you discussed getting your last radiation over the weekend, and she told you that you would have to sweet-talk the radiation oncologist yourself, as she has little influence over things like that. You forced down lunch and we talked about the nausea, where it sits, and what does or doesn't work to make it better. A nurse came in when your pump started beeping, and you had to make some calls and make some waves to get your labs from both Monday and Thursday, but you eventually got them. We compared lab reports and policies on getting them. You were disappointed about getting your period again, but I reminded you that a couple of months ago, you were disappointed about not getting it.

A little after 3 we went over to tea in the Atrium (I'm telling you, that is SO the way to be in the hospital if you have to do it). While we were there, the chemo nurse came by, gave you your pre-meds, then actually hooked up the chemo. We talked about the statistics of our cancers, who gets them, how they're treated, who responds to treatments and how the science progresses and the knowledge advances. While mine is very individualistic and there is not the expectation that everyone will respond similarly, yours is supposed to be more predictable, but you have so many anomalies, due to your age, the soft-tissue/bone debate, that the refractory nature of your cancer has people stumped. Your mom left during tea. We talked about you going on disability, other problems at work, and why you don't think the ADA would be of any help. We talked of alternative work ideas for you, but that the chronic dopiness shoots your ability to think--kind of important for a researcher, and the frustration of losing 7 days every three weeks. We talked about my dissertation plans, and the way you did yours. You told me the key was to find the one thing that would make me finish. For you, it was to come back home to Tom. We talked about death and dying, how to plan for it, and what to do with yourself and your things afterward. We talked about things we both wanted to do before that point. I suggested you check out Dream Foundation, the adult not-as-good-but-all-there-is counterpart to the Make-a-Wish Foundation.

After tea, we went back to your room. Juan Carlos called and said he'd stop by. Tom came over, we talked about home improvement, compared Home Depot to Ikea, and looked at lighting fixtures on line. I told you about my disappointment in this year's Miss America's contest (see--I put it into this time's notes!). I left shortly after that.

Thanks again for a lovely visit, and I'll see you next week at your party!

Copyright © 2003 The Shriver Family: Last modified: 01/06/04.