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#J04 (03Aug00) Up and Down

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Subject: Watched One #04 (03Aug00) An up-and-down week
From:     Jennifer Perlman

Hello Watchers,

It's been an up and down week. From a medical standpoint, all things are good. The sub-cutaneous emphysema (SQE air in my neck) has gone down considerably, at somewhat of a dear price for me. From when it was discovered two weeks ago (backtracking a little) the SQE was first treated inpatient with a readmission about which I was horribly depressed initially, but than adapted to within a few hours. My second hospital stay was in some ways better as I was in better spirits, hooked into fewer tethers and IVs and wearing my own pajamas. It only lasted a few days. On the more traumatic side, and I don't remember if I went into this in a previous e-mail, I had to have my trache re-put in and it took the doctors three tries with various different trache models to do it. It was a horrible experience and one which I feel somewhat scarred by. Still working through that one. Since being let out of the hospital though, things have been medically quiet. On Monday, we had a conversation with Dr. Lee the plastic/reconstructive surgeon, about the SQE. It had been treated for the past few days with a pressure bandage (recall the half mummified pictures of me), and he was unhappy with how that might affect the blood flow to the flap. Instead, he basically banned me from talking AT ALL. I have been completely silent for four days now and the SQE is almost gone. Of course, I have filled two 80 page notebooks with conversation, but what's a little carpal tunnel syndrome in this scheme of things.

Picking up on where I left off on missive #3, we did indeed go and see Charlotte Jacobs, the expert down at Stanford, on Monday. On the whole I found the experience disappointing and somewhat depressing. She was very empathic with how horrible it is for someone so young with no risk factors to get such a bad cancer, and she validated the treatment plan being proposed and carried out by UCSF. But nothing really new came out of the meeting. Mostly, I think she is an academic very familiar with all the research on all kinds of cancers and treatments, and basically what she said is that there are no studies which directly related to me. All of the studies of treatment outcome and benefits of this and that aspect of treatment are on different kinds of cancer, or different age groups, or blah blah. This was very disheartening because it left us feeling even more uncertain about whether to go ahead with chemotherapy.

The big issue for us about the potentiating chemotherapy is that is could affect my fertility, and no one seems to be able to tell us what our chances are. We've heard everything from 50/50 to and 80% positive chance that I'll be fine to have children. Let alone the issue of how long to wait. Some say you should be cancer-free for 5 years before considering getting pregnant, but tick tock, not the way for 34 year old me. We did consult with a high risk fertility OB-GYN both in the hospital and then again by phone, and actually, based on the type and amount of chemo I will be getting he is not that worried. He is in the 80% good outcome camp based not on hard data and research but on his long years of watching cancer survivors of various types get pregnant. I have decided to go with his position mentally and be optimistic. I have also decided that I have been so happy at UCSF that I am going to join the Group Practice where he is a member and have my babies at UCSF. So much for that. Funny I'm practically already knitting a baby sweater and I haven't even finished treatment.

On a more somber note, I have been emotionally so changeable, self-involved and difficult to predict that I am making myself and those around me crazy. I know that I am draining energy from my parents and Karl, all of whom have been the souls of patience, tolerance, and lovingness. But I know I am testing them. I continue to struggle with overwhelming anxiety, grief, spells of unexplained weeping, feeling traumatized. I have just been through so much that my defenses (which, by the way are notoriously strong) are overwhelmed and I have nowhere to put all that has happened. I am reaching out for help of various kinds and hope to get through all of this in time. I also think that much of this is normal for someone whose life has changed so radically in such a short period of time (6 weeks). So I try to cut myself some slack. But it's been really hard. Sleep is beginning to round the corner for the good. I slept 6 hours last night and only awoke raving 4 times about some delusional, very really feeling dream I was having. Poor Karl sleeps like a rock, yet I wake him anyway raving about something that makes no sense. But last night I was able to go back to bed and actually stay there sleeping until 6 am, so things are indeed getting better.

It think I'll head to bed now in the optimistic hope that I'll wake less frequently and get some much needed R.E.M. sleep.

Love to you all,

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Page last updated: Monday, 05 March 2001 05:38:35 Eastern Time.