Saturday, December 29, 2007
Thursday, December 27, 2007
Friday, December 21, 2007
The Winter Solstice is often associated with death and rebirth. How very appropriate that Debra exited this world to be reborn into another this very morning.
She was being held energetically by so many of you and I'm certain that made the transition to a pain free and loving place so much easier for her.
Be assured that her death was painless and a beautiful relief. Her mother and other friends were with her at the time of her death. Sofie and I sat with her after her death, told her we loved her and we will miss her very much. Sofie said that she's becoming an angel right now. We cried and kissed her goodbye.
A local memorial will be in January and the San Francisco memorial will be in the Spring. Details to follow for both.
Sofie and I are a bit overwhelmed right now so we're taking time to ourselves by staying at my condo tonight. We both appreciate all the love and kind thoughts that are pouring our way. We love each and everyone of you and are glad you've been part of this part of our journey.
Tennyson said it best,
I hold it true, whate'er befall;I think we were all very lucky to have loved and been loved by Debra.
I feel it when I sorrow most;
'Tis better to have loved and lost
Than never to have loved at all.
Crossposted from The Complex One's Musings
Saturday, December 15, 2007
So, I have a hospital bed, a tank of O2 and we are attempting to find positions that feel somewhat comfortable. The tumors are not helping. They are sore and painful and get in the way of sleep. Plus I am trying hard to drink a lot of fluids to avoid re hospitalization and trying to stay hydrated.
Todays plan includes a visit from a work friend to go through my closet and "shop". I would love her to have some of my winter jackets and things. So I hope things fit.
S-L-O-W. I have had to crank it down a lot. I don't have energy to spare, even when I sleep for hours. And sleep I do, although frequently interrupted. But I am trying to do all the things I am supposed to do.
Oh, and the cat is now out of the bag.....a group of you (unknown to me, but headed up by Rick Crane) sent the cutest Dell laptop, which should make blogging easier, as soon as I get more adept on the laptop....I have always resisted....I am an old fart, I guess.
Must go. MUCH LOVE TO ALL OF YOU.
Sunday, December 09, 2007
Debra, Sofie, Gracie 2 and Pounce
December 09, 20007
The Waiting Game
So as you can see from the picture, I’m in the hospital. I have been here since Thursday, and I apologize for the really bad hair. It’s kind of funny when you go into the ER. Kind of like when you go to the car repair shop. I thought I was coming in for dehydration and exhaustion. (I’ve been sleeping about 75% of each day and really unable to get much in, even liquids.) Come to discover, I also have fluid on my lungs, and a raging bladder infection due to the dehydration.
Those of you who will recall my last ER experience, which was something like 9 hours in hell, will be pleased to know that following extensive renovations, Duke now has an efficient and comfortable waiting room set up. I spent 8 hours in the ER, was seen by great people, and didn’t mind the wait at all. I was absolutely grateful when the resident suggested that I check in for a couple of days. Truth be told, it’s been terrifying at home. I keep wondering if I’d be lying in bed some morning, unconscious, and Sofie would find me that way. And I really can’t take care of myself anyway. So, I was absolutely delighted to be checked in as a guest of Duke.
Of course, there are tradeoffs. When you first come in, vital signs are done every four hours, which is probably good, but they’re usually introduced with a tap on the door and the clanking of a cart which, if you were sleeping, rattles you to your bones and wakes you up. On this particular first night, at one point shortly before 11 o’clock, the door flew open, the lights were flipped on full power, and there stood Agnes, in bright red scrubs. She just wanted to introduce herself as my nurse. There wasn’t anything in particular for her to do, as it wasn’t time for my vitals yet, she just wanted to say hi. (!) She actually turned out to be terrific, very accommodating, and quite unlike the nurse I had the next day, who, whenever I asked a question, seemed to get more and more guarded with me, as if I were questioning her very ability to be a nurse, which I wasn’t; I just like to know stuff.
So the days have gone by, with various fluids dripping into my port, to hydrate me, and with me making feeble attempts to eat small amounts of food and drink small amounts of liquids so I can stop the IV fluids. So far we’ve stopped and restarted the IV fluids three times. Food is absolutely unappealing. This AM I made myself eat scrambled eggs for the protein, but only after staring them down for two hours, so they were congealed AND cold by the time I put them in my mouth. It’s not that I’m nauseous; it’s just that food just doesn’t appeal at all, and I feel full all the time.
People have been great, calling to say hi and send their love. It’s hard to talk most of the time because I’m short of breath, which is another thing that scares me, because of the past history of emboli. But I feel good, and I’m being watched over so carefully, and in fact, I have permission to just not take care of myself, much less anybody else.
Joanna Lee and her daughter Naomi, one of Sofie’s earliest friends from California, had made plans to visit this weekend, about two months ago. Little did we know that I would barely see Joanna and that the visit, of course, would turn into a child-centric weekend. (High School Musical on Ice and a birthday party at a climbing gym.) Joanna is in fact being the scribe because I know, faithful readers, that if three or four days go by without my blogging, people think the worst.
So now that I’ve said the words, let’s talk briefly about the worst. There are still a lot of unanswered questions. The bone-crushing fatigue that I’ve been experiencing is quite likely to be associated with the amount of radiation I had. The loss of appetite, less so. The cancer is spreading, without a doubt. I don’t even need a CT to tell me; I can feel it. So now we are in a waiting game. Jamie is focusing her energy on Sofie, which is as it should be. Sofie’s definitely feeling the stress more, and I know that my being away and so sick is really hard on her. I’ve contacted hospice, because I know it’s time to start looking down that path, and I’ll select a treatment team within the next couple of days. Various friends are making plans to be part of the care team over the next couple of months. I know many people have wondered if they can come, but I’m trying to pace this whole thing, and there are still so many unknowns. For now, Brenda Laribee is the official keeper of the schedule, and point of entry for all guest inquiries. I truly hope that I’ll get some of my energy back and that I’ll have a few more months than I feel like I have right now. Today was just one of those days. Try as I might, I couldn’t get myself to feel better for more than half an hour at a time. So it’s a waiting game, and I’ll try to keep you all posted. --posted by Jamie on 12/09/07
Wednesday, December 05, 2007
Saturday, December 01, 2007
If this is going to resolve in three to four weeks, (post radiation, which was over the 20th), then I guess I can manage it. Somehow. But I am so fearful that this is *it* and it won't improve. I cannot live like this. I have nothing, no energy, no appetite, no interest in things. This cannot be it. And it is only December. I had plans for the upcoming year, nothing fancy, mind you, but plans. And I want more time, not just time in bed, but time to visit with friends, write letters to Sofie for when she is 16 or 21 or graduating from college. Time.
My dear friend Susan has been visiting from CA the past few days, waiting on me hand and foot. And doing something that I had not realized how profoundly I was missing it: Offering touch. An arm to hold on to, a shoulder to cry on, a pat on the back (or two) and that sort of thing.
Touch is an amazing thing. It can convey love, lust, comfort, tenderness, anger, all sorts of things. But touch is critical to being human, isn't it? I miss it. Without a partner, I am of course, not expecting "that" sort of touch. And frankly, not sure I would welcome that in any case. But tenderness, comfort, that sort of non sexual touching, is so important, and has truly been missing in my life.
Massage helps in a way. It offers skin to skin contact, in a soothing way that relaxes and comforts. But it isn't the same thing as what Susan has been offering for the past couple of days. I will sure miss her when she is gone!
Jamie is outside, putting up some lights on our house. As some of you might remember, I relented last year when Sofie really wanted Christmas lights. And I lived through that, so this year, it was simply a given that the lights would go back up. And I have found a place of comfort with this. I know deep in my soul that I am a Jew, but Sofie is not and it is OK for her to delight in Christmas. And Jamie will be her parent for a good part of her childhood and growing up, so it should be something they can share and delight in together. It is all about creating celebration, anyway.
So back to the fear factor. I find myself wondering as I am in bed, is this "it"??? Is it going to be like this until I die? Weak, unable to do for myself, all that? The blood transfusions I had yesterday didn't perk me up as they have in the past. Is that because I am too far gone?? Or is this simply the post radiation fatigue combined with the tail end of a four week cold? The snot tells me the cold is still with me. So what is it? I might have to wait it out a bit to find out. Stay tuned.
A big shout-out to my sister in law and brother and their three great kids for making this a wonderful Thanksgiving, despite the fatigue. Sofie had a total blast and I had a couple of good days. Cannot complain!!
Fatigue like this just sucks. I was told to expect about four weeks of it, post radiation, but it totally sucks. I cannot parent, I lose all appetite, I don't even drink enough. Bed is the only thing that matters. I hate it and I hate that I need so much help, but I do.
More later, I can see where this is going and it ain't pretty!