Scroll down for Susan's most recent updates.
Monday, May 25, 1998
(Reprint of Susan's recent email .)
Dear friends,
Because of system problems and Greg's fragile condition, he has not been able to post an update to his Web page for some time. I am not sure whether he will be able to do so anytime soon. This is why I thought I should try to get the word out to his loved ones that we're still here. I am very distressed that right now I can't post updates myself, but I've been too busy with taking care of Greg to get time at the PC to troubleshoot the problem. And I must say, my knowledge of vi, html, and ftp-ing is very sketchy. Being a technical editor, I know about the tools but not really how to use them easily.
Greg has been sleeping a lot and trying the best he can to take in nourishment at my urging. He continues to be very brave and independent but he is thin and weakened. We have good support from many caring friends. Thanks so much to all of you who have kept in touch with visits, calls, and messages of encouragement. You have made a difference.
One bright spot this week was that we received advance copies of Greg's book, so he has been able to hold the finished product in his hands. And it is beautiful. Many friends have asked what they can do to help. Well, I suppose you could order the book or the book and CD (there's a PC multimedia version or a plain audio CD). I think it would please Greg very much to know that his friends had the book.
We send our love to you,
-- Susan
Friday, May 29, 1998
Back in Touch
Over a week ago we started having Netscape problems and couldnt get onto the Web much to our frustration. Because of Gregs failing health he wasnt able to troubleshoot the problem himself and we called in a computer consultant. Netscape works now, but Greg no longer has the energy to write and post the updates. This felt like such a loss to me that I gladly agreed to let a friend who offered help me revive the Web updates.
There are a few design changes to the site now. In particular, check out the Friends link. I added more wonderful poems written by Gregs friends after we learned that the cancer had metastasized in February. I have been so moved by the tributes to Greg from his friends.
My friend and webmaster, Neil Murphy, is owner of Ghostdog Design in Burlingame. An artist and designer with whom I worked several years ago, Neil has offered to post whatever news I send him. A great relief not to have to worry about html and ftp right now. Greg and I have our hands full with the daily tasks of survival.
A few days ago I described our lives to a friend who has sailed around the world with his wife as his only companion as akin to being two people in a sailboat in a storm on the high seas. We have no time for lengthy discussions or arguments. Greg tells me what he needs and I jump. When hes feeling foggy or weak, I step in and make the decisions. Our time is spent cleaning his tumorous eye and trying to pour as much liquid food down him as we can. It felt like a triumph last night when we weighed him on our new digital scale and he was up to 157. A five-pound gain from the previous day. It also felt like a triumph that Greg had been lucid and sharp all dayhis typical witty self. His old friend Kate came over in the early evening and insisted on being the first person to write a check for Gregs book. We snapped a corny staged photo of Kate handing a check to Greg, who handed her the book.
More good news about Gregs book, Life Near 310 Kelvin. Our publisher and friend, Roger Williams of SLG Books, says Barnes and Noble and Crown will be carrying it. Dozens of friends have already ordered the book directly from SLG Books. Many of the orders have been from Gregs wonderful coworkers at PTC. We also heard that the midwestern sales rep of our distributor has added Gregs book to his list of personal favorites, which means he will push the book to stores in his region.
Its a quiet rainy Friday morning and the rest of the house is still asleep. I dont know how Greg will feel from day to day. Having a good day yesterday doesnt guarantee anything about today. The pain in his head has escalated alarmingly and has spread to his right ear. Yesterday evening he reluctantly took .75 cc of liquid morphine (Roxanol) twice at a 3-hour interval. We carefully note down everything in a log that we use to keep track of medications and food.
We dont go out together anymore, except for doctors visits, and we
both enjoy the frequent visits from friends very much. Did anyone lose
a pair of Rayban sunglasses a couple of weekends ago? They look like expensive
ones to me, but no ones called us about them.
Saturday Evening
May 30, 1998
Constipation Versus Open Space
I'm sipping a glass of the prune juice I bought for Greg while I write
this. I find it grimly amusing that we're both constipated these days;
he because of the morphine he must take to fight the terrible pain in
his head, me simply because I'm not eating enough roughage. This year
I've often thought that although Greg is the one with cancer it's really
Our Cancer. The price I pay for finally--after years of longing--achieving
a close, intimate relationship with a man whom I adore.
In front of me on the desk is the journal I use to keep track of our days.
11:00 a.m. Greg woke, spilled a bottle of spring water on the bedsheets
11:30 Cleaned eye
12:00 Took one Oramorph, 1 Senekot
12:30 Drank a little soup, a little apple juice (?? calories)
12:50 Napped
3:00 Cleaned eye, drank milkshake
(300 calories)
4:30 Pain in ear, took .75 cc Roxanol
5:00 Protein drink with carrot juice and banana (650 cals)
5:30 More pain in ear, another .75 cc Roxanol
6:00 Greg took out plate, rinsed mouth
6:30 Drank more protein drink (?? cals)
7:15 Exhausted from visitors, etc., went to bed Midnight--WILL NEED MORE
ORAMORPH, SENEKOT, ATIVAN
Because he is so unsteady on his feet, I must watch Greg every minute or ask a trusted friend to keep an eye on him. He is very disoriented but still remarkably acute with visitors and determined to be in charge of himself as much as possible.
We still find opportunities to kiss and I still adore him though his face and figure are so changed. But my friendly, open-faced giant looks sad and spindly now.
Falling into bed tonight at 7:15 in order to settle Greg down for a rest, I drift off to sleep thinking to myself that this experience is good for practicing patience, creating space inside of me. Maybe with more space comes more room to love. Greg always seemed to me to gracefully and effortlessly model that expansiveness for his loved ones--that great capacity for love.
Tomorrow, largely due to Fuzzy David Friedman's efforts, Bookshop Santa
Cruz will install a display for Greg's book. It will be beautiful.