Radiation 2 was completed on Thursday, January 24. When Peter completed Radiation 1 at UCLA he was given a certificate for showing courage, perseverance, and dignity. Duke doesn’t do that (hooray!), but the radiation techs indulge in hugs and farewells, and most folks take pictures. We did too, and one day I’ll add them, especially the horror mask. Since Peter had radiation to his neck, he had to have a custom-fitted mask on during the sessions to prevent any facial movements. This mask is thermoplastic, heated to soften it, and then put on the face to mold it to its contours. A picture of Peter with the mask on is quite scary and certainly worthy of any horror film.
Every time a major treatment is finished, there’s a sense of ‘now what’. We’ve had all too much experience of this. There have been 2 lengthy chemo series, one of 6 infusions, and one which would have been 10, but ended up with 8, and that was too many, as Peter’s body couldn’t handle any more; there was Provenge; there were various new drugs, all of which had a limited positive effect on Peter, and most recently, the two radiation series. I’m sure everyone with a chronic disease feels this way. One feels good about undergoing treatment even if it’s unpleasant – something is happening, the disease is being attacked by drugs or burned by radiation/chemo, there are nurses and techs and doctors and other medical personnel, all available during these treatments. And then they end. I’ve said this before in other ways, but I feel oddly safe during all these activities. Probably ‘activities’ is the right word. I ferry Peter around, I spend time waiting, I stay in the hospital, I make sure that everything is coordinated, I talk with anyone and everyone (previous post!), and then we’re home with no agenda other than daily medications, daily nutritional requirements, and fighting the disease.
My praise for Duke this time? The radiation oncology doc’s nurse told us about all sorts of people we could have access to: a dietician, patient resources, etc., and she set up appointments. We went to see the dietician, who had all Peter’s records (could their system be somewhat integrated?), and had discussed Peter with the hospital nutritionist we saw. The two of them had estimated Peter’s daily calorie intake for maintaining weight, as well as his protein requirements. Much to our surprise, they said that Peter needed a daily intake of around 2300 calories to maintain his weight, despite the fact that he spends a lot of time resting. It never occurred to us that fighting a disease increases the metabolism, and so does radiation and chemo. If Peter is to gain weight (our aim) then he has to increase that count of course. The dietician had lots of additional tips and gave us a heavy bag full of drinks and powders and coupons and recipes. So it’s chocolate pudding, custards, ice creams, rich milkshakes, deviled eggs, cream soups, Krispy Kreme donuts. Sounds good? Well, yes, but Peter struggles with ingesting food and has no real interest in it, which is quite common apparently. Our regime now is something calorific every 2-3 hours, even if Peter is sleeping during the day. He’s gained just over 1/2 pound, and is holding that.
I like everything about Duke. It’s very different from UCLA, but the difference is what we need. At Duke, the patient is the focus, not the research or the teaching, both of which are however superb. The entire staff, from the valet parking staff to the guys ferrying gurneys around, to the volunteers in the waiting rooms, to the vital signs nurses aides, and on up the medical hierarchy – all are pleasant, helpful, interested in you, and genuinely so. Also, everyone is knowledgeable, or if they don’t know the answer, they seek it out and let you know right away. We feel part of a connected community, and that is real Support, and real People.
When dealing with a very serious disease, it’s an incredible relief to know that everyone at the Duke Cancer Center is there for us, at any time. I like going there, whereas I used to hate going to LA (for those who don’t know, we commuted from San Francisco for 3 years, and then sort of moved to LA for a few months when it seemed this would make it easier for Peter). LA always represented illness and difficulties to me, and I used to feel a major fatigue as soon as the plane landed, or we got off the shuttle from the airport to Westwood – Peter didn’t feel this overtly, as he looked at the trips as a steps towards dealing with the cancer, but I could never quite manage that attitude). Duke and Durham feel good to me.
So on to labs and oncology appointments next week.