about learning the difficulties and rewardsnoreply@blogger.com (Skavookie)Mon, 2 Sep 2024 01:51:29 -0700Blogger http://www.blogger.com84125http://skavookie.blogspot.com/en-usnoabout learning the difficulties and rewardsabout learning the difficulties and rewardsnoreply@blogger.comhttp://skavookie.blogspot.com/2011/09/waiting.htmlUpdatesnoreply@blogger.com (Skavookie)Mon, 12 Sep 2011 14:39:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-8142442146636385651 As had been expected, I have increasingly difficult times communicating.  Some times I feel I'm just waiting to die, but then its like what if I'm supposed to do one last thing.  Although I cannot fathom what it might be.  Waiting and waning as my skills are fading.  It is rarely a sad wait, more of a ‘oh well.’ The funny thing about all this is I came to 8http://skavookie.blogspot.com/2011/08/what-i-believe-about-death.htmlnoreply@blogger.com (Skavookie)Wed, 31 Aug 2011 15:50:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-3743047638359146140 Some people have asked what I believe about death.  I could answer that I have no idea.  But that's a little too simplistic of an answer.  It is true: I have no idea what will happen.  And I look forward to finding out.  Now that I can't learn much more here, it is what I look forward to; although I worry about what I have forgotten to write.  I do hope that 0http://skavookie.blogspot.com/2011/08/two-projects.htmlprogramingnoreply@blogger.com (Skavookie)Mon, 29 Aug 2011 11:58:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-757157455434100184 I have to say that my personal communication skill is declining every day, but my comprehension is not declining as fast.  I would like to see (many ones holpfully) someone through programing my two important projects. I uses NetBeans for JDasher (http://code.google.com/p/jdasher/), and I'm pretty much on my own.  It is a “steering with mouse” port from the C.  1http://skavookie.blogspot.com/2011/08/morphine-such.htmlnoreply@blogger.com (Skavookie)Wed, 24 Aug 2011 17:59:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-98192499885944868 I was Tuesday prescribed a long release morphine and I would get to meet my hospice care nurse on Thursday.  Mid-morning Wednesday I suddenly got very tired and very dizzy.  So Mom called hospice and they sent the nurse early and she said it was probably my bodies way of getting used to the morphine and I would probably feel better the next day. She went though the things that we 0http://skavookie.blogspot.com/2011/08/some-final-words.htmlnoreply@blogger.com (Skavookie)Wed, 24 Aug 2011 08:40:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-8650616217605473504 If I send this out now, I might think of more final thoughts later, and what would I do then?  So this may be a series, but it may not.  And as the cancer progresses I may no longer have the facilities to check what I have already said.  This could be interesting. First, I have at times thought I wasn't really inspiring people as much as they said I was.  But I've gotten 1http://skavookie.blogspot.com/2011/08/hospice.htmlnoreply@blogger.com (Skavookie)Tue, 23 Aug 2011 12:10:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-6362308266605725400I had my hospice consultation today.  The most immediate effect is I will immediately be put on delayed release morphine every twelve hours.  I had thought that morphine would make me tired and not able to concentrate but the nurse said that the delayed effect usually makes that better.  She said that a physical therapist would be coming to our house and checking out what assistive0http://skavookie.blogspot.com/2011/08/my-message.htmlnoreply@blogger.com (Skavookie)Fri, 19 Aug 2011 16:26:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-764736871648295112 All my life I have faced difficulties including ADD, Tourette syndrome, OCD, and Asperger syndrome, but I, with the help of my parents and others, managed to deal with them.  I discovered a talent for teaching, especially students with disabilities of their own.  I believe the process of going through my disabilities strengthened me. I attended the University of Washington, 0http://skavookie.blogspot.com/2011/08/calendar.htmlnoreply@blogger.com (Skavookie)Thu, 18 Aug 2011 09:12:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-2814704929243588334This is what my calendar looks like at the moment to make it easier for people to find dates to meet with me. calendar_2011-07-31_2011-09-04.pdf Download this file calendar_2011-08-28_2011-10-02.pdf Download this file Posted via email from skavookie's posterous 0http://skavookie.blogspot.com/2011/08/we-knew-this-was-coming_12.htmlnoreply@blogger.com (Skavookie)Fri, 12 Aug 2011 07:31:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-6066380468273145647 I had an MRI flowed by an appointment with my doctor.  He said the tumor has grown back in the past six weeks and its bigger than ever.  The treatment options have a very slim chance of even slowing it down, and have side effects that I'm not thinking are worth it.  He didn't say so but I know that given the situation I'm in, I'm likely to die in less then a few months. I 0http://skavookie.blogspot.com/2011/08/we-knew-this-was-coming.htmlnoreply@blogger.com (Skavookie)Thu, 11 Aug 2011 19:38:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-3499037084901061245 I had an MRI flowed by an appointment with my doctor.  He said the tumor has grown back in the past six weeks and its bigger than ever.  The treatment options have a very slim chance of even slowing it down, and have side effects that I'm not thinking are worth it.  He didn't say so but I know that given the situation I'm in, I'm likely to die in less then a few months. I 0http://skavookie.blogspot.com/2011/07/rip-frank-whetten.htmlnoreply@blogger.com (Skavookie)Fri, 15 Jul 2011 12:59:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-3381825299012652523Yesterday I attended the wake of Frank Whetten, who died of brain cancer on July 7th.  Unfortunately, I was only able to attend part of it because I had a medical appointment.People say it's incredible how I keep fighting and not giving up, but I'm nothing compared to him.  He was incredibly smart.  He was one of the three or for of us in the brain tumor support group that when we 0http://skavookie.blogspot.com/2011/06/life-and-death-and-all-inbetween.htmlnoreply@blogger.com (Skavookie)Fri, 24 Jun 2011 13:25:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-958544024690048915I've been having an especially hard time writing and speaking, for reasons I'll describe below.  I won't spellceck this to document my condition.  But I am writing this with a program called Dasher that makes it much easier to write.  It trys to predict what I'm most likely to type and presents it to me with the most probable things bigger, and then I “steer” with my 0http://skavookie.blogspot.com/2011/06/moving-up-2011_13.htmleducationnoreply@blogger.com (Skavookie)Mon, 13 Jun 2011 15:43:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-8226076277112104328I'm giving this speech at the graduation ceremony for a school I used to work for tomorrow.  They call it "Moving Up." As some of you know, while I was in college I used to work here (Academy Schools), tutoring and helping in the classroom. I then moved to California to study for my PhD in math, planing on becoming a Professor. But at the end of the first quarter I was diagnosed with 0http://skavookie.blogspot.com/2011/06/moving-up-2011.htmleducationnoreply@blogger.com (Skavookie)Mon, 13 Jun 2011 15:40:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-592540976325612717I'm giving this speech at the graduation ceremony for a school I used to work for tomorrow.  They call it "Moving Up." As some of you know, while I was in college I used to work here (Academy Schools), tutoring and helping in the classroom. I then moved to California to study for my PhD in math, planing on becoming a Professor. But at the end of the first quarter I was diagnosed with 0http://skavookie.blogspot.com/2011/05/first-knuckle-of-thumb-and-dorsal.htmlnoreply@blogger.com (Skavookie)Wed, 11 May 2011 11:30:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-6671253898068213568Yesterday I had my routine injections of phenol in my nerves leading to my right finger flexers.  The purpose of this is my brain is constantly sending strong signals to those flexers instructing them to make a tight first out of my right hand, and thus driving my fingers painfully into my hand.  The injections help dampen the signals.The needle used to inject the phenol also sends a 0http://skavookie.blogspot.com/2011/01/last-week-at-hospital.htmlnoreply@blogger.com (Skavookie)Fri, 28 Jan 2011 17:00:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-8332402950195285682Well, I got redundant tests and they still don't know what I have/had.  I don't have a fever anymore but I'm still feeling exhausted, unstable, and shaky.  We started out at urgent care at the neuro-oncoligists orders.  They of course futzed around for a bit, then the tests began.  They weren't equipped to access my port so they had to draw blood from my arm, which in the best2http://skavookie.blogspot.com/2011/01/round-two-aborted.htmlnoreply@blogger.com (Skavookie)Thu, 20 Jan 2011 19:38:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-4861204798512251987I went to get chemo round two but the labs showed my platelets at 53.  They need to be at least 80 for me to get chemo.  So it was a long exausting fruitless evening.  Furthermore, I expect this to be a trend, in which case I will have to take longer to recover and the cancer will get more time to adapt. Posted via email from skavookie's posterous 3http://skavookie.blogspot.com/2011/01/to-those-who-want-to-be-notified.htmlnoreply@blogger.com (Skavookie)Wed, 19 Jan 2011 13:47:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-1455244149018230570If you have trouble viewing or submitting this form, you can fill it out online: https://spreadsheets.google.com/viewform?formkey=dEp5Ykt6azZDTTVLMkU4MWV2TjVNc3c6MQ List of people who want to be notified This cancer will kill me eventually, it is just a matter of when. Don't be alarmed, I'm just trying to be prepared. So I figured it was past time to be doing things like compiling a 1http://skavookie.blogspot.com/2011/01/faith.htmlnoreply@blogger.com (Skavookie)Sat, 15 Jan 2011 09:51:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-3012091668164605287I wish I could believe as strongly as some of you.  But sometimes doesn't that feel pompous?  To believe so strongly in what is really vastly out of the simple reaches of our minds.  I guess that is part of why I have trouble believing.  Often I think that we're not supposed to know. And logic loves to get in the way.  I firmly believe, as much as I can believe anything,0http://skavookie.blogspot.com/2011/01/30-years-old.htmlnoreply@blogger.com (Skavookie)Sat, 15 Jan 2011 08:06:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-1558200958364477874I turn thirty today.  I honestly didn't really realize it until a few days ago.  Of course, it is anticlimactic, especially seeing as how I've felt like a senior citizen for the past four years.  That reminds me of a time when I had gone back to school and I was walking home one day and a little girl asked her mother why that “old man” was walking funny.  The 0http://skavookie.blogspot.com/2011/01/done-with-round-one.htmlnoreply@blogger.com (Skavookie)Thu, 6 Jan 2011 17:18:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-7242956309631745941I'm finished with my first round of IV chemo.  It all went well except I forgot one important step.  Before I get my chemo, I have to give a urine sample so they can run a quick lab to make sure my kidneys are fully operational.  Unfortunately I have a habit of going to the bathroom immediately before appointments.  So they hooked me up to a bag of fluids and made me drink pop0http://skavookie.blogspot.com/2010/12/second-gamma-knife-and-chemo.htmlUpdatesnoreply@blogger.com (Skavookie)Thu, 30 Dec 2010 13:45:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-8110180595629418912As many of you know, I had a second gamma knife on December 23rd.  I just now got back from an appointment with my neural-oncologist.  Since the chemo I've been on no longer seems to work, I will start a different kind next week.  Whereas the chemo I was on was oral, this will be given though IV at two week intervals (it is slightly more complex than that but that is the 0http://skavookie.blogspot.com/2010/12/as-brain-turns-12162010.htmlUpdatesnoreply@blogger.com (Skavookie)Thu, 16 Dec 2010 19:42:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-2147462136639818460A few months ago, I had Gamma Knife for a regrowth along one of the edges of the original tumor.  In the process we learned of another small growth.  Then I took two rounds of chemo.  My latest MRI showed growth one maybe shrinking, growth two a little bigger, and it showed an entirely new growth that was quite a bit larger than the other two.  So the chemo I'm on clearly 0http://skavookie.blogspot.com/2010/11/my-body-is-officially-odd.htmlnoreply@blogger.com (Skavookie)Wed, 10 Nov 2010 19:08:00 -0800tag:blogger.com,1999:blog-4327706334574994649.post-673726532180310248I see a doc every three months to get injections in my right arm to make my hand relax (or else they dig into my palm).  She finds the muscles to inject by sticking a needle that serves as an electrode into the part of my arm the muscle is “supposed” to be and basically wiggling it around until the targeted finger twitches.  With me she commonly says “Where the hell is0http://skavookie.blogspot.com/2010/09/gamma-knife.htmlUpdatesnoreply@blogger.com (Skavookie)Thu, 16 Sep 2010 13:35:00 -0700tag:blogger.com,1999:blog-4327706334574994649.post-7857577719315576360I had my gamma knife treatment today.  The halo they bolted to my skull wasn't quite like I had imagined, in good and bad ways.  The halo is there to hold my head very still and as a refrerece point.  After placing the halo they took a high-rez MRI and then they had to let the computer run numbers for an hour.  In this hour I discovered that it is extremely difficult to eat or0