Saturday, September 20, 2008
My heart is breaking. My dear, sweet, loving Steven of the ready smile, my firstborn, is gone. I just want to lock myself in, pull the drapes and talk to no one for a few months/years. Maybe not bathe. We fought so hard. Steven was so incredibly brave and uncomplaining. He suffered everything for the hope of being a father to his children. He asked who would walk his daughter down the aisle? Who would teach his son to change the oil in the car? To be a man? I thought if I hung on tight enough I could pull him through this. The Fates laughed.
When Steven was first diagnosed and was sent to the Bone Marrow Transplant Unit at Baylor Medical Center in Dallas, it occured to me he was born there many years ago. A chill went through me. Though we have lived all over the world, it would be in that same place that he completed the circle of his given days.
The day last November when he was diagnosed, I set myself to know everything I could about the disease. When they told me which chromosone showed damage, I knew that it was one of the worst. I knew the statistics. I kept them to myself, not daring to whisper them out loud to anyone for fear of jinxing our meager chances. For two months after the transplant, things looked like maybe, could be, possibly we had a miracle. Finally I dared to breathe a little easier, to begin to hope. Then one week later, disaster struck. My worst nightmare. I had planned to bring him home with hospice care on this same Friday, to take good care of him, to find a way to continue transfusions and buy him a few more days, weeks, dare I say months? I negotiated with Hospice. I pulled some strings. You see, I would take such very good care of him. His brother is a doctor, he would help. I would get him to eat and drink. I would at least delay the inevitable. The rapidity of this ruthless disease's return robbed us of even that.
As hard as the last ten months have been, I had so much time with Steven and there are a lot of wonderful memories. That will be a comfort to me when I run out of tears, if ever I do. I just really enjoyed being with him. He was smart and quick and funny. We managed to laugh about the most dreadful things. The many, many, many nights alone at the various hospitals, just the two of us. The few weeks out of hospital he stayed here with me. The countless trips to the clinic in Dallas. No matter what indignity he was going through, we mocked it and laughed. He never complained about any of the horrors he was undergoing. That last trip to the hospital for still another chemo and hopefully a second transplant, knowing full well what was in store, the only complaint Steven had was that he just didn't know how he could take hospital food again.
I love that three of his friends came last Monday night to watch the Cowboys game with him at the hospital. They made quite a ruckus and a neighboring family member came to fuss at them and ask "Didn't they know, people are dying on this floor?" Steven found that totally hilarious. He was so exhilarated when I arrived for the night, just happy, giving me a blow by blow on the final winning touchdown. That was a scant four days ago.
My Hungarian step-daughters Lydia and Alexa flew in over the last couple of days and they were wonderful. The step-sisters were so good for Steven. Lydia took over and ran the show. Alexa was hit very hard, but we will try to comfort her. My other son David is being a rock for me, but he told his step-sister it feels as if someone amputated his right arm. As you know, there is no comfort really. Just the slow march of time to dull the edges.
One really funny scene today, if things can be funny with your beloved son growing cold on the bed next to you. A young man arrived and Lydia sort of "challenged" him at the door of Steven's hospital room. He said he was Steven's brother. Lydia was gobsmacked. She said she was Steven's sister and she'd never heard of him. Evidently he'd never heard of her either. It was Steven's half brother through his father. Alexa laughed at one point and said she had a totally step family. When she married and acquired a step-daughter, she called to apologize to me for how she had behaved many years before.
As you can see, it is my habit to handle grief and pain and troubles with wry humor. And scrubbing, lots of scrubbing. Somehow today, in addition to the painful time at the hospital, I've cleaned windows and pitched papers, sorted through Steven's belongings from the hospital and thrown out almost anything that reminded me of those terrible times, gone through mail that has piled up for months, cleaned litter pans, washed sheets and towels, mopped the kitchen floor and various other tasks. I'll keep this up for a while (poor cats, poor house). I may be begging my friends to let me scrub their houses, too.
No knitting content today. Knitting has been replaced with the above mentioned scrubbing. But I will add a photo of Steven and his proud mother the day he graduated from university...
And with his brother the Best Man on his wedding day...
Life was so full of promise then.
Saturday, September 13, 2008
Argosy Wrap is finished but not blocked. Noro Silk Garden, approximately 7 skeins on size 8 needles. Very happy with it, now waiting for a very cold day.
Kay, my writer friend of 39 years (OMG), has been sending me books and books and books to help me through the interminable waits at the clinic and late nights at the hospital. I started knitting a pair of socks for her before Christmas. But my mind and inability to count straight right now won't let me finish the complex pattern, or strangely any socks for the moment. First it was chemo hats, then shawls and scarves. Since I don't see those socks being finished any time soon, I started an Argosy for her since I'm "in the groove". Although the Argosy pattern is different from the shawl, I actually find it easier and more repetitive. Silk Garden again. Aren't Mr. Noro's color choices fascinating? You never know how they will knit up once you start.
The color sequence totally surprised me as I knit the first few repeats. Where is the rusty red, the browny green, the purple, the warm turquoise? But now that I'm twice as far, I'm actually quite fond of it. There is a Japanese expression for this sort of "let the surprise happen" (as in Raku) that escapes me right now (it's on the tip of my tongue), but I'm embracing it. Aha, it came to me...wabi-sabi (represents a comprehensive Japanese world view or aesthetic centered on the acceptance of transience).
So what is awful and horrible about this day? Steven's doctor called and asked me to arrange a meeting with the family. As some of you know, the leukemia came back three weeks ago and Steven has been fighting it with chemo and hopes of another bone marrow transplant. He is actually coming through the first chemo round surprisingly well considering, but a bone marrow test yesterday showed that it hadn't touched the leukemia, which is now 90% of his bone marrow. So no transplant, no more chemo, no options. Lots of tears. A lot of hard decisions must be made.
Here is a photo of my firstborn three or four years ago in healthy times. Kind, smart and funny.
Only fellow knitters will understand. All through the meeting with the doctor, I knitted ferociously, if not correctly, on Argosy. When I came home, I sterilized and refilled the hummingbird feeder at midnight, did some laundry, cleaned cat boxes, replenished the bird feeder, stared blankly at repetitive news of Hurricane Ike on CNN and I actually might run the vacuum before falling into bed, hopefully so exhausted that sleep will find me. It is very strange the things we do to cope. I should have continued knitting chemo hats. As long as I knit chemo hats, I kept Steven safe. He finally told me to stop. How many chemo hats did he need? I should have kept knitting those hats.