Subject: Watched One #05 (11Aug00) Eating and Radiation
This is a happy update (even though it starts off a bit grim).
Although I have been in contact with some of you over the past week, I have not kept everyone abreast, so I wanted to share the developments of the past week.
On this past Monday, I saw my main surgeon, Andy Goldberg, who gave the go ahead for me to start eating, talking normally, etc. We were set to have the radiation simulation (where they set up exactly where the beams will be aimed, etc.) on Thursday, and to start radiation on next Monday. One issue that complicated things is that it is isn't really good to have the NG tube during radiation because it goes down my throat and could aggravate an area that is likely to get pretty upset and aggravated from the radiation as it was. The other option if I was not eating enough on my own to sustain nutrition, was a G-tube (stomach feeding tube) but this has to be put in either before or in the early stages of radiation because by the middle the throat, which the tube passes through to be placed get too inflamed to do it by the time it is hard to eat.
So, when Andy gave me the go ahead to start eating, I suddenly felt a lot of pressure to be able to eat enough and get enough nutrition orally to sustain myself, really fast. His advice was to start with pudding and Jell-O (surgeons don't know shit about rehab eating), so I tried jell my first day. It was so difficult, I ended up in tears! My mouth right now feels like some foreign land with no orientation, gravity, and only limited nervous system input). It was really depressing.
On Wednesday, I went to see Carla Gress, my speech therapist, and she choked when she heard that I had been told to start with Jell-O, as this is notoriously difficult, let alone pudding which took me 30 minutes to finish getting out of my mouth! Instead, I am learning about where things go in my mouth through liquids (like fizzy water, and apple juice). It will be a slow process, but I know in time I will learn to eat again. We made a unanimous decision that there was not time enough for me to get oral nutrition up by when we needed it and that it was too much emotional pressure on me, so next Tuesday, I will have my NG (nasogastric) tube removed (yeah, no more looking like a Star Wars character or sick person!) and have a G-tube placed. This is apparently a relatively minor procedure which will take placed under sedation on an outpatient basis. It will be invisible to outsiders which will be nice. It will mean that I can continue to get my nutrition through cans of goop and protein supplements as I have been, and that I can take my time learning to eat real food and really enjoy it as I go without pressure. Seems like an all around good solution and I am very happy with it.
On the radiation front, I have strangely gotten a one-week long reprieve. When I went in for the radiation simulation yesterday, it turned out that I have so much stiffness in my neck and jaw that they can't quite aim the beams right. I have been given exercises and homework to get me in shape for a re-simulation next Friday and will begin radiation one week later than the original plan. Fortunately, I had a whopping dose of radiation during the surgery which bought us some time, so my radiation oncologist, Jeanne Quivey is not concerned about this brief delay. (By the way, I almost brought her a sputum popsicle as a present, but restrained myself at the last minute.)
What this feels like to me is a week's vacation. I have appointments next week, but not so many, and I will really be able to enjoy my best friend Paige's visit to the maximum as we sit around relaxing and just recuperating a little bit. Ironically, Paige is almost as much if not more of an invalid as I am, having badly sprained her knee, so I may end up waiting on her! And she doesn't drive...Great to have useless friends to come take care of you...
So, I am in very good spirits. I am finally sleeping through the night with no horrible bizarre dreams or delusions and am much calmer during the day. I am learning to take naps and slow down a little bit which I think is what my poor beleaguered body and soul need right now. I have engaged about a thousand professionals to help me through this (massage, acupuncture, trauma-specialist therapist, etc.) and feel like I am doing all I can do to come through this with flying colors, at least to the extent I have control over.
I am so looking forward to long visits from Paige, Jennifer, and my brother from back east, and will slowly feel ready to receive visitors and phone calls more each day. I have to go slow because I have a tendency to overdo it, but next week, perhaps consider my doors more open. And of course I have loved getting everyone's e-mails.
The one sad note is that my parents left yesterday. It was with both sadness and sweetness that I allowed them to go. They are profoundly tired and need a break, but I will miss them until they return in September. They have been an incredible comfort and support and there is just nothing like your Mommy and Daddy when you feel terrible...
Karl has continued to be wonderfully strong, communicative, nurturing, and patient, even as I have become much more independent, feeding and medicating myself, tidying the house, doing laundry (for a change) and loading and unloading the dishwasher. It must be a relief to him to not have to look after me quite as closely and to have "the old me" returning little by little. We feel very close now.
Enough news. I thank you all for watching over me from various distances and will stay in touch as I feel able.
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