09.27.09
Posted in Uncategorized
at 8:22 am
It’s been awhile since I wrote here, for a couple of reasons. I’ve been fairly busy planning, going on, and taking a trip to Argentina. I’m still in the process of posting the details of that trip on my personal blog and the photos (or at least the good ones, on my flickr account, for those who are interested.
I should have written was a little bit about picking up Scott’s ashes, and that is not a very comfortable thing to do, or to write about. I’ll say briefly, it was a long drive, the mortuary was an entirely too-pleasant place full of entirely too-pleasant people (save one unsavory-looking person outside, not affiliated with them, I’m sure), and although it may be small, the shoebox-sized box full of ashes is surprisingly heavy. The ashes came well-sealed and accompanied by a certificate that gives me permission to transport them. After taking quite some time to be ready, they spent the last month or so on the lower shelf of the end table that became a sort of shrine for Scott, full of photos and other encouraging things.
This weekend, I brought them back to Burney, the small town where Scott grew up. His ashes will be buried here, probably without any particular hurry, so one of the errands this weekend was a walk over to the local cemeteries. There is a new one across the road now that the old one is nearly full; I think either would do quite nicely.
Yesterday, we had another gathering. This one was in the parkaround Burney Falls. Close family and local friends gathered there. It was again informal (it’s a picnic area in a dusty park and besides, Scott was never one for dressing up). People shared food and stories, and we ran the photo slide show on a couple of laptops. This was where his childhood was, so many people had stories about Scott from before I knew him. I tried, in turn, to share some stories about parts they hadn’t seen, going to school together, working together, building a life together. I hope to post some of my stories about Scott here as I have time.
If you have a story about Scott that you have not yet shared, please leave a comment here whenever you get a chance.
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07.14.09
Posted in Uncategorized
at 12:36 pm
I’d like to have a gathering in Scott’s honor at my home on Saturday, July 25 at 4pm. If you would like to attend, please email me or Scott’s parents or my parents, or leave a comment replying to this post*. We’ll fill in the details (such as where “here” is) and get an approximate number that way. We’ll provide some snacks; guests are invited but not obligated to bring some food to share.
This will be an informal gathering. It’s California, it’s July, and I don’t have air conditioning here. So please wear shorts and leave the black at home. We’ll all be happier that way, and Scott was never one to stand on ceremony.
Speaking of ceremonies, that’s not what this is. There may be something small back in Burney later, when the time comes to bury the ashes. At this gathering, I’d like to celebrate Scott’s life. Please bring stories and photos about Scott or send digital photos my way.
This is short notice, and I apologize to those far away, but that’s partly by design. I can’t possibly accommodate everybody’s summer plans, and I don’t want to wait too long. If you had other plans for that weekend or the trip is too far for you to make on short notice, please plan to visit with me or Scott’s parents some other time, instead. We’d be glad to hear from you outside this gathering.
*I’d rather not post my contact information here, but if you leave a comment on this post and include your email address, I’ll be in touch. I see the email address you leave, but the general public does not.
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07.11.09
Posted in Uncategorized
at 9:09 am
Santa Clara officially opened another stretch of the San Tomas Aquino/Saratoga Creek Trail yesterday. I biked over to the opening ceremony on my end of the trail, listened to a lot of local officials make a lot of opening remarks, then biked the trail out to the bay. I rode with one other cyclist there who I already knew and, for part of the way, with another acquaintance of hers. From my house to the bay and back, I think I rode about 10 miles.
I haven’t been on my bicycle at all lately, and I’m surprised I didn’t get sore and tired. While I was working, I was pretty good about getting outside at lunchtime to walk, but in the past three months, I have spent even more time indoors than usual, keeping Scott company in the hospital and then at home. Even before his seizures, he had lost weight and balance and endurance. Chemo takes a lot out of a person, too.
I’ve also been getting out into the garden this year. I don’t think it’s going to look like much, at least until it rains some more in California, but Scott’s dad and brother have been helping keep the weeds mowed in the back yard. At this point, we’ve built some simple garden boxes and we’re working on getting some irrigation, both on and off a timer, to the back fence.
In any case, it was a beautiful day yesterday, and it felt good to be out in it.
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07.09.09
Posted in Uncategorized
at 11:03 am
This is still Scott’s blog, and I thought I’d better give his news top billing for a day or so, but I’ve had a lot of people ask me how I’m doing, and I might as well answer that for everybody.
The short answer is, I’m not doing all that badly. I’ve cried, of course, but not at the times anyone else might expect, and quite probably not as much. I didn’t sleep too well the night before last, but I’ve lost as much sleep on homework assignments. Part of the reason is that I’ve had three years to see it coming, to prepare, to get used to the idea.
I promised myself shortly after Scott’s diagnosis that I wasn’t going to spend whatever time we had left together mourning somebody who wasn’t dead yet. It took a few days and a certain amount of conscious resolve before my noon walks were again walks and not trudges. There have been plenty of tears since then, of course, but they have not controlled me, not overwhelmed me.
Scott’s death is not overwhelming now, either. Instead, it is something of a relief after the last few months. That’s not to say I would have wanted it to happen any sooner; it came at the right time. He would not have chosen to die so young either, but he died peacefully, at home, loved. From all I could tell, he was not in pain. And though every living being must someday die, I wonder how many people have actually witnessed a real death. We shelter each other from it and speak of it in euphemisms, but death, too, is natural. It is not that scary.
I will probably do most of my mourning and soul-searching silently, by myself. That doesn’t mean I am lonely or antisocial, or that I’m going to withdraw, or even that I want time alone right now. It simply means that I am an introvert in the true sense of being driven from within, meaning that I deal with the truly personal things from within.
I will probably change. Doing things my own way is going to mean doing things differently than I would with Scott here, even though I was independent and individual already. Many of Scott’s opinions, tastes, and habits rubbed off on me, but I am still my own person.
There are selfish things that lift my spirits now, too, and I am letting them. I had a real day off yesterday, all to myself. I can get on with my own life again and not camp by his sick-bed to care for and advocate for and comfort him (however gladly I continued, so long as he needed me). I don’t have to worry about what Scott will think of what I do now. I’m trying to keep the selfish parts balanced and healthy. I’m not going to throw out everything of his, but I’m not going to keep everything just as it was, either. He is not his belongings. I will keep those things that serve me either for their use or their memories, but a can of shaving cream has no further purpose in either respect.
As I told Scott when this all began, I may not be very tall, but I am stronger than I look. For all those who would like to help, I ask that you let me use my own strength and make my own path, and not be too surprised if I change in the process. Also, trust that I will ask for what help I need. I am not alone, and so far, it is not that hard.
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07.08.09
Posted in Uncategorized
at 12:31 pm
Scott never brought me flowers, save perhaps one he picked off our rose bush somewhere along the line. It isn’t that he was a thoughtless sort; quite the opposite. Besides that he was allergic, he was under orders not to. I’ll pick flowers from my garden now and then, but it bugs me to spend money on them, and it bugs me even more to see others spend money on them.
Maybe it’s the engineers in us, but flowers and cards have always struck us both as a little wasteful, a little impractical, and a touch too expensive, considering what they are. Just not our thing.
If you wish to communicate, please send a comment here or an email. I would also like to collect digital photos of Scott and the family, but that can happen in the upcoming weeks. I will post more details on where to send or post them, as soon as I figure out those details, myself. (Suggestions, meanwhile, are welcome.)
As a practical matter, I would also suggest that whatever money you would otherwise have spent on a card or flowers should instead go to your choice of the American Lung Association or the American Cancer Society. They will think of something far better to do with it than anything I could accomplish with another card or plant. There is no special fund; I am not that organized right now. But feel free to put “in honor of…” somewhere, if you wish.
I don’t need a receipt; I’m not keeping score or raising funds. I do know that lots of little donations, even the $5 or $10 sort that might otherwise have bought a greeting card, can add up to something significant.
I realize this note is about 12 hours late, so if you’re one of the organized ones who already sent something, do not worry; I’ll understand.
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Posted in Uncategorized
at 1:43 am
Scott woke up this morning rather early and spent about an hour alert and conscious. He was, and still is, scared, and I think angry and frustrated that this is it. But he was also rather certain that today was going to be it, and to within about ten minutes, he was exactly right. Officially, he died at 12:10 am on July 8th, but the process began at midnight, almost exactly. There were heartbeats and a few leftover breaths after midnight, but nothing much that could be called life.
His parents will tell you that he was born exactly on time, and so he died, three years after his diagnosis, two days after his 33rd birthday, and almost exactly when he said he was going to. I will never know quite how he knew.
He complained a couple of times today about being short of breath, and all the usual tricks, the breathing treatment, draining the shunts, and so on, didn’t seem to help. Partly, it is panic. When he is short of breath, he grows frightened (and who can blame him), which results in shorter, shallower breaths. Getting control again and calming him down grew harder and harder. As of about 11pm, he was still breathing, but gasping, with his mouth wide open. We got him to sleep after that, after a fashion. It took more drugs to get him to this point than I have seen him have at one time before, but it was a relief to us onlookers (and I hope also to him) to have him unconscious, if only because it means he was not panicking, not in pain or distress, or at least not aware of it, if he was. Fortunately, both of the medications we used to calm him and keep him free of pain can be absorbed through his mouth; he did not need to swallow them to get their effect.
I held his hand for many hours this evening. Right toward the end, his hand and arm grew clammy with sweat, which seemed unusual to me, because I can hardly recall him sweating in the past several months, even on the hottest days. We had been removing a great deal of fluid, mostly through shunts, and could keep comparatively little fluid in him.
He spent most of today sleeping, as I said, but he woke up this morning to talk to me. We said our goodbyes, though in truth we’ve said them in so many ways before. He sent his love to his family and to a few others who sent greetings in the past hours and days. I am sure he appreciated everyone’s support and greetings over the past months and years, so please don’t feel like you have missed your chance. He and I have both known throughout this process how much love and care were coming from so many people all over the world.
The end, when it came, was relatively quick and peaceful, from all we could tell as onlookers. He simply stopped breathing. His lips turned blue and his face white in a remarkably short time. He did not appear to struggle or to be in pain. He told me earlier today that he didn’t think he knew how to die. All living organisms on the planet eventually do, though, and even those without the capacity to think manage it somehow. Scott has simply done the same. As I told him earlier today, I do not think we need to know how to die any more than we need to know how to be born. It simply happens.
I don’t know that he had many regrets left, save perhaps that everything was over too soon. I do wish either he could have lived a tiny bit longer or the book could have arrived a tiny bit earlier. Scott had been eagerly anticipating the release of David Weber’s latest novel, By Heresies Distressed, and he has been reading the pre-release chapters online as they came out. The book arrived on our doorstep midday today, only slightly too late to do him any good. I read him half a chapter from the website this morning, but by this afternoon, he could neither stay awake to focus on reading it himself nor to listen to me read. I have not read this particular novel yet (it only came out today), but I can vouch that David Weber writes excellent books, mainly in military science fiction, with a few fantasy titles. For his part, Scott was just aware enough of the situation to be frustrated by it.
This blog is not over yet. I will post announcements here about memorial arrangements when we know what they are. The plan for tonight is to turn over the body to a local mortuary. In the slightly longer term, he wishes to be cremated and have the ashes buried in Burney, the small town where he grew up. I am leaving the decision to his parents whether to hold a funeral or memorial service, as such, but I would like to plan an informal gathering in his memory here in the coming weeks. (We can call it a wake if it needs a name.) I will also try to post some of my own memories, thoughts, and news here in the weeks to come.
For now, thank you all who have supported us in ways big and small. Thank you to all who have offered help in various forms. I have not accepted more of it only because I have not needed to. That may yet change. In any case, I will keep you posted.
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07.06.09
Posted in Uncategorized
at 9:32 pm
Scott fewer and fewer moments awake. Scott wakes up sometimes enough to say whether he would like some food, to sip a little something, to take his pills. Mostly, he just sleeps. If I speak loudly, I can wake him, and I can keep him awake for long enough to ask if he’d like something, or to hug him, or to tell him that I love him. I’m trying to notice when he wakes up and hug him then, talk to him then. If I wake him up, it doesn’t always stick.
Scott has always been a very honest, very forward-looking person. It’s what I admire most about him. From the very beginning, he sought information from all sources, looking up details the doctors didn’t want to bother him with. He has always wanted to know the straight story, everything about everything that was going on inside him.
So he was awake, mostly, when the nurse was here today, through sheer force of will, I think. He was awake when she called the doctor, and the doctor said there was really no point in doing the usual blood sample today. He was awake as I explained just how much of the weekend he had spent sleeping. He was awake to ask what to do next, and to get the answer. The nurse spoke cautiously, strictly in facts and observations. He has changed a lot just since she saw him last Thursday. She used phrasing like “new phase of the illness” and “keep [Scott] comfortable and safe.”
So when Scott’s dad asked whether all this tiredness might be low blood counts that would respond to a transfusion (and he has been tired in the past when his blood counts were low), and she explained a bit cautiously that she didn’t think so, it was Scott who finally stated it for him in no uncertain terms, “I’m dying.”
This is the same Scott who was quite clearly not dying a few months ago when his oncologist first suggested comfort care, who pushed to get himself back up the stairs three more times after he could hardly walk, even though he never quite spent another night in his own bed as a result. The same Scott who has spent the last three years working and hoping diligently to fight to the end, to hold off the inevitable for an improbably long time.
But it’s not the same Scott. This Scott cannot raise his own arms. Only days later, he cannot walk to the bathroom on his own anymore. He can’t quite make a clear decision about whether, or what to eat. He can, for the moment, lift his head, but barely, and not all the way. It has dangled left too long. I think it may finally have hit home with all of us, and with him, that there is a point past which it is pointless to continue.
Of all the things he feared, I think he feared losing his intellect the most. He feared going to sleep and not waking up, but I think he also feared uselessness and incoherence. He has been bored lately, and not just in the past week. As he described it, anything complex and challenging was too hard; anything simple and easy was not challenging enough. When he is awake and alert, he is still asking the right questions, but sometimes he is asking them at the wrong times, and he is spending precious few moments awake and alert. Perhaps it’s just as well to let him sleep if nothing urgent is going on. I don’t think he could stay awake to focus on his laptop or a movie or a book. Still, he reminded me to tell the Monday night group not to come tonight. There are moments, but not many. I think he was very frustrated that he could not stay awake to visit with everybody who came to see him yesterday for his birthday. He wanted to.
One of the doctors who saw Scott in the hospital a few months ago saw his charts and his scans before she saw his face. As soon as she saw his face, she knew that he was not on the verge of death, whatever else the scans might suggest. She said she had seen cancer patients with one or two little lesions who were clearly less likely to live and others who had so much cancer as to make one wonder how they carried on.
I think if she saw him now, she would agree that he is not the same as he was then.
I know it is not his desire to die, and to that end, I will keep him as safe and comfortable as I can, but I suspect the end may come soon. Scott has a strong will and a strong spirit, so his “soon” may yet surprise us, but in the end, it is up to him.
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07.05.09
Posted in Uncategorized
at 10:19 pm
I’ve had birthdays before when, in lieu of presents or festivities, what I really wanted most was a good, long nap. Every once in awhile, when I am busy enough to be that behind on my sleep, it’s nice to indulge in a two-hour nap that, with a groggy and unreasonable decision, turns into a three-hour nap and knocks the rest of the weekend off schedule.
Though I don’t think it was his plan, Scott has now been asleep for most of 48 hours, waking intermittently to a chorus of offers to feed him. His head is flopping to the left when he sleeps, and I wonder if the loss of motion in his right arm is related in some way. (I’m sure his head was flopping right when he lost motion in his left arm.) The continual offers of food are because he has eaten so little in the past few days, and kept down even less. Still, his stomach is upset, and all the talk of food only wears on him. He snapped at us once or twice.
I’m starting to think, though, that all the sleeping he’s done lately is a good thing. He’s very weak and shaky when we have him out of bed to go to the bathroom, and in his moments awake I see confusion and, in his own quiet way, discouragement and fear. Sleeping is none of these things, nor is it throwing up or teetering on his own feet across the room, wondering why his strength suddenly vanished.
We celebrated his brother’s birthday last weekend, and he ate cake then. I’m just as glad, because there was no birthday cake of his own today. We had planned last week to have cheesecake, a favorite of his and, not coincidentally, quite high in calories. But the communication got lost somewhere between those of us whose plan it was and those who were supposed to pick it up. All he’s managed to eat today for solid food is a little macaroni and cheese, which didn’t sit too well. I’m not sure whether cottage cheese counts as solid, but he’s having a bit of that, too. It didn’t seem quite right to have his favorite birthday cake without him for his own birthday, so we went without it. Someone did manage to show up with a cluster of balloons, one Mylar one that says “happy birthday from all of us” and one each of red, white, and blue.
Those of us who do still prefer solid food had barbecued pork sandwiches and fresh fruit. He would have liked it, if he could chew it or keep it down. His family gathered here and everybody said hello and goodbye and wished him a happy birthday and offered food between naps. We managed, without coordinating it, to get him three large, square birthday cards, two of which are Star Wars related and play music (almost the same tune) when opened.
For his part, he made it through a whole bottle of Boost in two separate sessions. When he was still on chemo, everybody seemed to think that protein shakes and liquid supplements were a great idea, but his stomach rejected those faster than anything. Now, it seems to be one of the things he can tolerate, but there are still few flavors and brands that he likes. Liquids served about half a cup at a time seem to have the best chance of anything of staying down.
It was a small birthday. We kept it to immediate family. It was also a big birthday, in the sense that nobody quite dared hope that he would make it to this one. But he did make it. He’s now 33, going on 98.
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07.04.09
Posted in Uncategorized
at 9:58 pm
The rest of the family is going to go watch the town fireworks display out the upstairs windows, but I’ve had a long day, and I’ll catch them some other year.
Scott is still asleep. He has been asleep most of the day, except for the times he wakes up, generally for a few moments at a time. On previous days, he’s been able to stay awake long enough at least for a movie in the evenings. It doesn’t look like even that will happen tonight. On Wednesday, we visited a couple of small, local museums, the NASA visitor center and the Intel Museum. The intermittent periods of alertness continue through the night, so it’s not a particularly good or restful sleep here with him. I will probably stay down here again tonight and let someone else have the sofa tomorrow, depending on how badly he sleeps tonight. I sleep well enough downstairs here on the sofa, but only so long as he is sleeping, too. For a while, he was able to reach and use his laptop and his book, but that doesn’t seem to be working right now.
Besides being scarcely able to stay awake, he has been shaking very badly and he is having more trouble than ever before lifting his elbows. We think at least part of that and the sleep is that there may be from the anti-seizure medication. They upped the dose again when he was on the antibiotics after the pneumonia, and I think he was metabolizing it differently then than he is now that he’s off the antibiotics.
He also has thrush. It’s essentially a yeast infection in his mouth, meaning his tongue is white and his throat has been sore. I called a nurse today about his nausea (of course it’s a holiday weekend, so it’s not his regular nurse). The nurse seems to think the thrush is responsible for the nausea. We have medication, a rather bad-smelling yellow suspension. He has to take it four times a day by swishing it around in his mouth, gargling, then swallowing. He’s not happy about it, but we explained how important it is, and we’re going to do all we can to see that he gets all four doses. Usual causes of thrush include cancer, antibiotic use, steroid use (Scott has steroids now both for his drug condition and as inhalants for his breathing), and use of mouthwash. Scott qualifies on all four counts. I hope we can get the thrush under control well before his two weeks’ worth of medication run out. When he is awake, he’s fairly discouraged, first with his condition, second with the rest of us for trying and trying to offer food or suggest something he can eat.
They will be sending a nurse out tomorrow to take a look, and Scott has an appointment with his doctor on Wednesday, scheduled a month or so ago, just after his last one.
Scott’s 33rd birthday is tomorrow, and the third anniversary of his cancer diagnosis will be two days later. We have a barbecue planned tomorrow for the family, but several of us wonder at this point whether he’ll be very awake for very much of it. I somehow doubt he’ll be enjoying much of the food.
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06.25.09
Posted in Uncategorized
at 8:39 pm
We don’t usually eat in the office, especially not these days, but Scott made it up the stairs again tonight, so we brought his dinner to him. Tonight’s dinner was corn (run through a blender), mashed potatoes, and pork (also run through a blender). It doesn’t make the food look any better, but it does open up the variety of things he can have. We’ve stopped tallying the calories and the potassium again, having done that exercise for a few days. He’s eating what he can, and generally what he likes. As of today, he has four weeks to go before he’s supposed to start chewing again. He’s not thrilled with the prospect, but we’re trying to keep his diet as varied as we can. We had homemade strawberry smoothies for lunch (I joined him for that blender activity).
His first order of business on reaching the top of the stairs was to take a nap in his own bed. He’s still not sleeping quite flat, so we arranged a foam wedge and an assortment of pillows. For my part, I crawled in beside him and read all but the last ten pages of my book (it’s a rather dense bit of nonfiction; I’m not exactly in suspense for not having finished yet).
We have a little round “bug” massager with four spherical feet. It has been tracking Scott’s progress back up the stairs. It was a little more than halfway up last night. Today, it’s sitting on the railing at the top.
Then he settled down in front of his own computer and started playing a video game for the first time in a long time. The medications were making him drowsy and all sorts of things, and for a time he didn’t think he would be able to see well enough or stop shaking enough to coordinate playing a video game. For those who are curious, he’s playing Diablo II, having canceled his World of Warcraft subscription some time after he went into the hospital. It’s an oldie-but-goodie.
I think he’s gotten a bit bored of all this lying in bed, and I don’t blame him. When he’s in bed, he has a laptop, company almost all the time, books and movies. Lately, we’ve been taking in an episode or two of Monk on DVD each night, since Scott and I never saw that series before. We do try to get him out and about, too. Yesterday he went with his dad to look at trailers (his brother is thinking of getting one), and there have been various other shopping trips about town.
I think I will suggest we visit some of the various light-duty, local museums around. There are several he hasn’t seen, others that I haven’t seen either, and most wouldn’t be any more strenuous than a shopping trip.
Aside from the blender diet and an increase in long afternoon naps, really not much has changed about Scott’s health or condition since the last post.
He’s still upstairs with me as I write, but probably we’ll head back downstairs before bedtime.
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