VD Update

[randy_byers]

It's been a while since I've written about what's going on with me on the medical/health front. I have now completed 23 of my thirty radiation sessions. I've got a (very welcome) three-day break this weekend, because of President's Day on Monday, which leaves me with four sessions next week and then three the week after that. The final seven radiation treatments will be different from the previous ones in that they will be more narrowly focused. Up until now they've been hitting both the area where the tumor was (the most likely place for the cancer to return) and two more-or-less concentric areas around it where other cancer cells are most likely to be concentrated. For the final sessions, they will not hit those "marginal" areas, and one possibility is that since less of my brain will be hit, I may feel less nausea as a result. That would be a huge relief in itself, because right now I'm really struggling with nausea, as well as a general feeling of being tired, over-medicated, and overwhelmed. Already after only one day off from the radiation, I'm feeling slightly less nauseated today, but I'm still basically feeling like crap. I've gotten to the stage where most food, even water, tastes like nothing or like something actively bad.

Once the radiation is done, I'll also be done with the first phase of chemo. Then I get four weeks off for my immune system to recover. Those four weeks are already planned out. The first week of March I'll be going out to La Push in the Olympic National Forest (my sacred place) with my sister and possibly a friend. Then LaVelle and I will go to Portland, where I'll be getting a tattoo ("Thy life's a miracle") and visiting other friends. That Tuesday I'll be flying down to Sky Valley near Palm Springs to spend most of the rest of the month with my mom and dad, exposing myself (but not my new tattoo) to solar radiation. I need to be back in Seattle by the 24th to get an MRI to see whether the tumor has returned or whether the first phase of treatment has beaten the cancer back for a time. After that is phase two of the treatment, which is to take oral chemo five days a month, with periodic blood tests and MRIs, for the rest of the year. If the cancer is in abeyance after that, I should be able to travel a little more freely, depending on various factors.

The main factor is whether I'll have retired or decided to go back to work. Right now I'm leaning strongly toward retirement, but it depends on figuring out my financial and health insurance situation. As I've written before, I got totally pissed off at the UW Benefits Office because they misinformed me about a long term disability policy that they first said I had been paying for all along and then told me had actually been canceled back in 2002. I demanded an explanation for how my file was misread, and I also demanded that they assign a new benefits officer to me. I'm feeling embarrassed now at how evasive they've been about what seem to me to be two very simple demands, to the extent that I even called the assistant director last Tuesday to ask why he hadn't responded to my email, only to have him blame the lack of response on his boss and claim that he couldn't answer any of my questions because it "wasn't his area of expertise." Right, Mr. Assistant Director. At this point I'm looking into hiring a lawyer to see if the evasiveness is masking some kind of liability. It's delaying my retirement, and it's not the way I want to be spending my time, but I find their behavior highly suspicious.

Also last week, I started to worry that things like my willingness to hire a lawyer in this case indicated that I was undergoing a personality change, because in the past I probably would have tried to avoid the confrontation. On Tuesday I'll be talking to the chemo side of my treatment team to see whether the Kepra I take to prevent seizures might be causing my to feel more aggressive, which is one thing they warned me could happen when they prescribed it to me originally. I've also asked to speak to a counselor about the possibility that I'm in denial about my anger about the shitty hand life has dealt me. I haven't sought out any kind of peer or psychiatric help before now, because I felt my support network was so good, but it's entirely possible that I've been using the copious love of my friends and family as a way to avoid harsher realities/feelings. ("Love is the drug," indeed.) We shall see.

Meanwhile, I'm clinging to the number seven with desperate anticipation. I know intellectually that I've had it a lot better than many, especially with the chemo side of my treatment, but I'm so ready for this part of the ordeal to be over. It's really a bummer when salad (my miracle food) tastes like shit. Still, I've managed to keep up a fairly regular schedule of long walks, and Lonnie (who gave LaVelle a break this past week) and I walked around Lake Union yesterday. It was exhausting, but probably in a healthy way. Lonnie's wife, Terry, and youngest son, Cody, are here for the long weekend, and we hope to see our Yapese friends, Theo and Antonia, later today. It's all good medicine for the heart, if not the brain.

Comments

[gerisullivan.livejournal.com]

Thanks for the recap & update. Yay for the radiation sessions being in the single digits, with hip, hip, hoorays soon to follow when they're finally done, done, done with that part of your treatment!

Your personal support network is wonderfully strong, but psychiatric help and peer groups offer different things -- different experiences, skills, and perspectives. It's not certain that you'll find those helpful, but they offer realities that we don't, that most of us can't. So, yeah, seems worth checking out.

It's probably because I've spent the last 30 years working in benefits communication, but I'm thoroughly maddened by the way the UW Benefits Office is dealing with you. When someone or someplace makes a mistake, as they claim they did in first telling you that you had the long term disability policy, what's most important is how they then *handle* that mistake. Because, yes, we live in a world where mistakes happen, where people make mistakes. But the more they shut down now, the more they delay, the more they don't respond, the worse they make everything.

I am in awe of your continued long walks and am confident they're serving you well on multiple levels.

Onward! And All That Jazz....

[randy-byers.livejournal.com]

One problem with cancer peer groups that my radiation oncology nurse mentioned is that sometimes you feel that you've taken on everybody else's problems, on top of your own. So at this point I'm seeking one-on-one help. We'll see where it goes from there.

[gerisullivan.livejournal.com]

That makes sense.

I really like your radiation oncology nurse -- this is far from the first useful, thoughtful info you've received from that source!

I joined a online CancerCare support group for caregivers the year I was helping with caregiving for both Susan Palermo and Jack. I found it mildly helpful, though far from as helpful as I wanted it to be. Oddly enough given my usual proclivities, I just didn't engage with it all that much. It did help me see the wide variety of responses people have under such situations.

[randy-byers.livejournal.com]

I've liked everybody on my treatment team so far, and everybody at the UW Medical Center I've met who aren't on my treatment team, but Gaia is truly awesome. I was very happy, when I found out that she grew up in Albuquerque, that I was able to hook her up with my boss, who has organized a group of New Mexican ex-patriates at the UW to go out to eat green chiles once in a while.

Embarrassed?

[(Anonymous)]

You say you're feeling "embarrassed now at how evasive they've been..." - did you mean to use a different word? In this situation a personality change that makes you more aggressive seems like a good thing. I hate confrontation, too - I imagine many people feel the same way (although we share a couple of friends who seem to welcome it).

Jerry K (not on LiveJournal for years now)

Re: Embarrassed?

[randy-byers.livejournal.com]

I meant embarrassed in the sense that I find their behavior pathetic and embarrassing as a fellow human being. I found it almost painful to talk to the assistant director, because I just wanted to ask him, "Why are you doing this? Have you no shame?"

[holyoutlaw.livejournal.com]

Thanks for the detailed update. It's much appreciated.

[kalimac.livejournal.com]

Yeah, evasiveness would make me suspicious too.

Sounds like you're on top of your treatment - you know what you're doing and why, and prepared for what comes next. That's good to read.

[scarlettina.livejournal.com]

I think it's completely appropriate to seek legal counsel on the disability issue with UW. They're not answering perfectly appropriate questions and dodging you at every opportunity. Counsel is one thing, action another. I like your nurse's suggestion of one-on-one counseling to deal with, well, what you're dealing with. I hope you find what and who you need.

[voidampersand.livejournal.com]

Whether you get a lawyer depends on what you want. If you just want a new benefits officer, you want someone within the University who has the status and connections to help you. If you want a settlement, that probably calls for a lawyer. Even then it would help to reestablish good communications with the Benefits Office. You want them on your side.

[randy-byers.livejournal.com]

I asked them to assign a new benefits officer to me. I'd be happy to talk to one, but I don't want to talk to the first one ever again.

[ron-drummond.livejournal.com]

It may be that whatever personality change you are undergoing has much more to do with the mortal implications of your condition per se than of any drug you are taking. With your remaining time potentially so short, it makes sense that your patience for certain kinds of nonsense is fast approaching nil, and your willingness to take appropriate action to stop or alleviate it much greater than before -- changes that are perhaps worth embracing and celebrating. The balance to seek would be between going farther than before, but not too far. Do you feel you are already erring on the side of going too far?

[randy-byers.livejournal.com]

To be honest, no, but obviously I'm entering new territory for me; it feels strange and a little unnerving. I'm just trying to get oriented, and it helps to hear from friends that my behavior doesn't look out-of-synch to them. So yes, it's entirely possible that I'm undergoing a personality change for the better. I'm just trying to make sure that I keep my feet on the ground as my life is upended. It's tricky!

[sladkaya-jizn1.livejournal.com]

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