Subject: Watched One #11 (08Oct00) Quiet time
Well, I was surprised by all the responses to my drawing, and thankful for all of your thoughts about it. I guess it conveyed something that words can't, as creativity often does. I have admit that it looks much more artistic in the photo than in real life, though, really it does...
It's been a quiet time for me this last week on several fronts. On the one, I've been spending more time on my own, calling on my folks to take me to appointments but preferring to have some down time in the early parts of the day. On the other, my mouth sores are pretty much prohibiting me from speaking at this point, and I am back to one word meta-messages, and to writing on my trusty green tablet. This weekend, Karl and I have laid low. I communicate with him with facial expressions a lot, but have been told that my facial expression at rest is pretty grim, because I am holding a lot of saliva in my mouth (nice...). I am also really pretty exhausted, at least today, and feeling the cumulative effects of the radiation. Nevertheless, I am going to try to make it through dinner out at a nice nearby restaurant with my parents and Karl at 6:30 to maintain some semblance of sociality and normality.
Our wedding was supposed to be next Sunday, a week from today. This is bringing up a lot of feelings for me and I think for Karl. How fast life can change. How fast time goes. How sad I feel at now having the celebration that I had envisioned. Not wearing my dress (and it would have looked great now because I am a perfect weight after all the cancer-related weight loss!). Not seeing all those people who were to have traveled to be with us. Not ever being able to duplicate what our wedding was intended to be, regardless of what kind of celebration we may or may not have later. I have heard from a friend that Karl's updates demonstrate the kind of expression of love and caring that a good heartfelt wedding ought to, and I think that going through this together has only brought us closer, although I can think of many ways I would rather this happen. We still aren't going to be in New England looking at the leaves and being with all those we love next weekend, and that is a loss for both of us.
But we didn't want the weekend to go by uncommemorated, so (on my last weekend before radiation ends) we are going away for to a romantic inn in Sonoma to be together. Yes, I will be exhausted, yes I will likely not be able to talk much, yes, I will be in discomfort, but we'll be together with no distractions, and all that other stuff will be going on no matter where I am. I and hear they have very big plush comfortable beds. We need some time with nothing else to do, and it seems very hard to create that at home. I don't know how those of you with children ever manage it. Karl has been working very very long hours as a deadline approaches, so I have seen little of him. I miss him during these crunch times, even when things are normal, but now I am really yearning for some quality time alone.
My parents have been wonderful this past week about letting me spend time alone and being available when I need them. I have been much healthier and more energetic than they were expecting me to be, but this has been a bit of a double edged sword as they feel less desperately needed by me. I am hoping that they are taking some time to relax in San Francisco and to do some fun things with each other. They have been amazingly flexible in their adaptation on a day to day basis of what I do or don't need. They have barely seen Karl, so tonight's dinner will be a nice time for them to catch up with him. I know that my Mom has been working hard in the mornings remotely on the computer. She makes about 10 phone calls to her office to make sure her assistant doesn't make her lose her job. I think it's great that she knows she's needed there too. Dad seems pretty content chauffeuring us around to appointments, but I wish there were more for them to do.
The next phase of my recovery feels very complicated to me. I will be done with radiation in 7 more treatments (date is Wednesday, October 18). My last chemo has been delayed because it will further inflame my mouth sores. My oncologist delayed it to give my mouth a break and because it will be equally effective any time in the next month, so I am not sure when I will be done with that.
I will be immensely relieved when the "treatment" part is over, but the rest of my treatment will not be over. After resting and healing for a few weeks and getting my tongue back in working order, I will start speech therapy, and learning how to eat again - the latter of which I am really nervous about, although with the working g-tube there is no real pressure. The next phase is the beginning of trying to get back to normal, and I think it's going to take a very long time. I liken it to the time after the funeral and the public mourning when the person closest to the one who died is left alone to pick up the pieces and figure out how to go on with life.
I have a lot to figure out both long and short term, and it is looming large as the treatment phase's end is at least in sight. I hope that I will be able to continue to share my thoughts and my journey with you all as it unfolds.
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