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#J13 (10Nov00) Long Road

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Subject: Watched One #13 (10Nov00) Long Road
From:     Jennifer Perlman

Hello Watchers, 

Before I say anything, I must address Karl's last few missives.

1) Much as I like, and am like, my cats, I am not eating their food...Yet. 
But there is a certain security in the constancy of my diet and eating routine over the past four months, (two cans of goop mixed with water and various unnamed and mysterious Chinese herb capsules, breakfast, lunch, and dinner), that I am loathe to give up surprisingly. 

Within the next week I will probably begin taking in some nutrition by mouth (mind you I did not say eating). I'll be starting with juices and soups, but I am strangely unexcited by the prospect just because it will be one more complication in my life. One more thing to have to think about. The transition to getting all my nutrition by mouth, and hence, taking my G-Tube out will probably take a few months, so no miracles are to be expected. But still, I am not eating cat food... 

2) Even with an impaired tongue I still have it in me to be provocative. 
As Karl mentioned, at a dinner party last Sunday (which was wonderful and very lively, thought I sat through three courses with an empty plate feeling a little bit strange), I asked a dicey question. 

Several have wanted more details -- I asked the Jesuit priest guest whether as a priest in one of the most openly gay and liberal cities in America, he ever felt in conflict between his own beliefs, the teachings of the Bible, and the Pope. Showstopper. He was very graceful about it and it sparked a good go round the table. Karl said that the Catholics never really answer your questions... 

Things here are beginning to normalize a little bit. I am driving again, and the autonomy of not having to ask someone to accompany me everywhere feels great - like I am at least approaching being a grownup again. I have a lot of trouble pacing myself so overdid it several days in a row and ended up passed out completely for almost all of yesterday just sleeping it off. 

My body doesn't really know which way is up and when I have energy I feel pretty good so just keep going, then suddenly I crash. Learning curve mediocre. My days are still defined most of the time by appointments with various people helping me to get better: Feldenkreis, neck mobilization therapy, massage, psychotherapy, and follow-up appointment with doctors. 

So despite the fact that I should have tons of time on my hands, between eating napping, and appointing, the days are going by pretty quickly. I really am looking forward to finding a way to make some quiet time for myself to begin to really contemplate and take in all that has happened to me and to Karl over the past months. Now that I am not going through hell and have just a tiny bit of distance it is quite overwhelming. 

The last few weeks of radiation as well as the two weeks after were awful. I was unable to speak for three weeks due to the sores in my mouth and I was in a lot of pain. It made everyone around me who saw my suffering feel miserable and helpless, so it was a pretty mopey time. I think that the process of really feeling and grieving some of our losses will take place slowly and in bits over a long period of time, and in a strange way, I am looking forward to being able to *feel* emotionally some of what has happened, although I know it will be painful. 

I am hoping to find some creative outlets for myself, most likely sculpting to express some of the verbally inexpressible parts of my experience. Haven' t quite found the venue or the energy yet, but will soon, I hope. In the meantime, I participated in a tile making workshop in which my parents and I made tiles to be hung in the new Cancer Center opening soon. 

I did a series based on the drawing I did, "Days", as well as two text tiles about learning and gaining wisdom from the experience of having cancer, and valuing the family, friend, and community support I have been lucky enough to have. I am looking forward to seeing them in their final stages. It felt good to get my creative juices flowing. 

Things are generally much better now and I am told that my speech is improving daily. It is still very tiring to talk on the phone for a long time, but I would welcome hearing from people now. You'll have to trust that I either won't answer the phone or will tell you if I am too tired to talk, but don't stay away. I am missing my friends. Enough for now. 

Hope all of you are well and happy. 


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Page last updated: Monday, 05 March 2001 05:53:08 Eastern Time.