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Rollercoaster
Jan. 30th, 2016 06:09 pmFor the most part, my mood since my diagnosis has been upbeat, largely because of the sea of love I've been swimming in since the news spread. However, I've gotten a massage each week for the past three weeks, and every time I've been surprised at how much tension there was to release. Obviously this is a stressful situation I'm in, and my optimistic mood has been disguising some of my anxiety. This week, something happened that pushed me off an emotional cliff, and it was the biggest outburst of emotion since I initially learned I had a tumor in my brain. Even when I learned that the tumor was a highly aggressive form of cancer, I felt more numb than anything.
Anyway, what precipitated the emotional crisis was talking to the University of Washington Benefits Office. I've been trying to figure out what to do with the rest of my life, however much of it there's going to be, and how to handle my finances and medical insurance going forward. So I thought I'd find out what the Benefits Office could tell me. I got through to someone there the week before last, and she had very exciting news for me: It turned out I had been buying long term disability insurance all this time! What a bright boy! All my financial and medical insurance problems seemed to be solved. I was so ecstatic I drank two beers that night. Then days passed in which the packet of application forms she had promised to send me never arrived, so I called her back only to be told that she had misread my file and the LTD policy had been cancelled when I went on leave without pay to live on Yap in 2002 and had never been reactivated. Goodbye to the easy solution to my financial and insurance problems. It took me a few hours to melt down, but when I did I finally unleashed a burst of anger on Facebook letting loose my angst about everything that has happened to me in the past couple of months. Once I got the anger out, I started to cry. I think that it all really needed to happen, and I felt a lot calmer after the outburst and hugs from LaVelle and Denys and a long phone conversation with Sharee.
I asked the Benefits Office if they could document my failure to reactivate the LTD policy, and the woman I'd spoken to called me again this week to explain what happened. She also tried to explain some other benefits I might qualify for, but that just made me angrier, because they all pretty much ended up being nothing. One is a basic LTD policy the UW buys for all employees, but the maximum benefit is $240 a month, and it basically disappears if you have any other income such as Social Security Disability Insurance, with perhaps a minimum benefit of $50 a month (she wasn't even sure of that). Another was some kind of supplemental benefit that I could apply for if I took disability retirement, but usually it only applies to people who are 62, so my guess is I'd get nothing from that either. By the end of the conversation, I was so angry I could hardly see straight, and frankly I'm now considering some legal options that I don't think I should post about in a public forum.
On the much, much brighter side of the news, I've now finished three weeks of the initial phase of radiation+chemo treatment, and I'm feeling great. They had warned me that the worst side effect of the radiation would be fatigue and that peak fatigue would come in the third week, but while I do feel tired, the worst side effect of the radiation has actually been nausea. Even the nausea is pretty low grade, like the fatigue, so over all things are going swell on that front. Even better, in my weekly consultation with my radiation oncologist, her intern, and her nurse, I was told that my cancer has the IDH1 mutation. They couldn't really explain to me how this improves my chances of survival, and the one article I tried to read about it is also ambiguous about why there is a correlation between the mutation and longer survival rates, but the article states unambiguously, "In a prospective analysis, grade II-IV glioma patients [I'm grade IV, which is the worst] whose tumors harbored mutant IDH1 or IDH2 had significantly longer overall survival than patients without IDH mutation." So add that to the three positive factors I listed last week that all argue for better than average chances of a longer survival time for me: 1) good baseline health, 2) relatively young age, and 3) methylation of the MGMT gene. So whatever bureaucratic nightmare I'm entering, trying to make sure I have a means of support going forward, at least the medical news has been nothing but good lately. That boosts my optimism, it does. I'm actually feeling pretty good about my chances of working out a financial and insurance plan one way or another too.
Anyway, what precipitated the emotional crisis was talking to the University of Washington Benefits Office. I've been trying to figure out what to do with the rest of my life, however much of it there's going to be, and how to handle my finances and medical insurance going forward. So I thought I'd find out what the Benefits Office could tell me. I got through to someone there the week before last, and she had very exciting news for me: It turned out I had been buying long term disability insurance all this time! What a bright boy! All my financial and medical insurance problems seemed to be solved. I was so ecstatic I drank two beers that night. Then days passed in which the packet of application forms she had promised to send me never arrived, so I called her back only to be told that she had misread my file and the LTD policy had been cancelled when I went on leave without pay to live on Yap in 2002 and had never been reactivated. Goodbye to the easy solution to my financial and insurance problems. It took me a few hours to melt down, but when I did I finally unleashed a burst of anger on Facebook letting loose my angst about everything that has happened to me in the past couple of months. Once I got the anger out, I started to cry. I think that it all really needed to happen, and I felt a lot calmer after the outburst and hugs from LaVelle and Denys and a long phone conversation with Sharee.
I asked the Benefits Office if they could document my failure to reactivate the LTD policy, and the woman I'd spoken to called me again this week to explain what happened. She also tried to explain some other benefits I might qualify for, but that just made me angrier, because they all pretty much ended up being nothing. One is a basic LTD policy the UW buys for all employees, but the maximum benefit is $240 a month, and it basically disappears if you have any other income such as Social Security Disability Insurance, with perhaps a minimum benefit of $50 a month (she wasn't even sure of that). Another was some kind of supplemental benefit that I could apply for if I took disability retirement, but usually it only applies to people who are 62, so my guess is I'd get nothing from that either. By the end of the conversation, I was so angry I could hardly see straight, and frankly I'm now considering some legal options that I don't think I should post about in a public forum.
On the much, much brighter side of the news, I've now finished three weeks of the initial phase of radiation+chemo treatment, and I'm feeling great. They had warned me that the worst side effect of the radiation would be fatigue and that peak fatigue would come in the third week, but while I do feel tired, the worst side effect of the radiation has actually been nausea. Even the nausea is pretty low grade, like the fatigue, so over all things are going swell on that front. Even better, in my weekly consultation with my radiation oncologist, her intern, and her nurse, I was told that my cancer has the IDH1 mutation. They couldn't really explain to me how this improves my chances of survival, and the one article I tried to read about it is also ambiguous about why there is a correlation between the mutation and longer survival rates, but the article states unambiguously, "In a prospective analysis, grade II-IV glioma patients [I'm grade IV, which is the worst] whose tumors harbored mutant IDH1 or IDH2 had significantly longer overall survival than patients without IDH mutation." So add that to the three positive factors I listed last week that all argue for better than average chances of a longer survival time for me: 1) good baseline health, 2) relatively young age, and 3) methylation of the MGMT gene. So whatever bureaucratic nightmare I'm entering, trying to make sure I have a means of support going forward, at least the medical news has been nothing but good lately. That boosts my optimism, it does. I'm actually feeling pretty good about my chances of working out a financial and insurance plan one way or another too.
