randy_byers: (Default)
The latest MRI is bad news that's paradoxically good news. Going into it I was thinking that if it showed improvement of the tumor (which I thought was likely) I was going to press the oncologist to tell me how much longer I was going to take Avastin and what she could do to help me feel less crappy. As it was, the MRI showed that "the tumor (non-enhancing portion, whatever that means) is growing into both thalami giving me a "Parkinsonian walking and getting up problem." It had also occurred to me in the past couple of days that the tumor might be growing, since my problems of failing strength and balance and fine muscle control have been getting worse. At Crooked River last week I frequently needed help getting off the couch and out of chairs.

The paradoxically good news in this is that my oncologist, Dr Taylor, feels that the treatments are making me worse rather than better, particularly when it comes to quality of life, although she was also worried that the Avastin was encouraging the tumor to spread and go deeper into the brain.So she's recommending that I take a break from chemo, Avastin, and the Optune and let my body find its current balance and then reassess how I want to proceed. I think I've exhausted all the normal treatment options at this point, so I'm not sure what would next anyway. Clinical trials? Isn't that the Hail Mary stage of thing?

In the meantime I'll continue with physical therapy to work on my balance and strength, although she thinks my problems with strength are neurological at this point rather than muscular. I'll have an occupational therapist come out to assess the safety of the house for someone in my condition. She can also arrange for some home care from hospice, even though she doesn't think I'm actually down to my final six months, just to get a sense of what services they offer when I do need them,

I'll continue to get an MRI and visit Dr Taylor every two months and we'll see how things go. I'm soooooo ready to take a break from treatment that I have to be careful not jump to the conclusion that I feel better already. I'm still basically an invalid who needs to keep his eyes on the road and his hands upon the handrails. Let it roll, baby, roll. Until about 8:30, or whenever I'm ready to go to bed. Quality of life, that's what I'm all about! May it improve a bit during my vacation from treatment.
randy_byers: (Default)
It's been a couple of weeks since I last posted about my health. So here's the latest.

I had another seizure. It didn't fully develop, because I felt it coming on and ran upstairs to take a Lorazopam, which is intended to stop seizures in their tracks. This one kept coming on, moving past the shuddering in my chin and jaw that is the first sign of a seizure for me. So I ran back upstairs (evidence that my seizures are NOT grand mals) and took another Lorazopam. I also told Denys what was going on, and he called the nurses station at the Alvord Brain Tumor Center. By the time he got someone on the line, the second Lorazopam had pushed the seizure back, and I was able to tell Mandy Myers (yes, her real name, which has given us a special bond) what was going on. She didn't seem too concerned about the seizure, and basically told me that the increase in dosage of my regular anti-seizure med (a generic version of Keppra) probably hadn't taken effect yet. I was to call if I had any more seizures.

Previous to this episode my sister and I had seen a new physician's assistant at the Center, and along with increasing the dosage of the Keppra, she told me that the plan was to switch me to a new chemo called Lomustine and discontinue the Temodar. This was fine by me, since it felt like my body was done with Temodar after thirteen monthly rounds, nor to mention the daily "micro-doses" that I took on my Micronesian trip. I felt exhausted all the time, could no longer walk more than a few hundred yards at at time, and was sleeping more than half the day. I felt very uncertain of my balance and felt miserable in general. I liked the physician's assistant, whose last name is Stockhausen (I didn't ask if she was related to the composer, but I probably will if I see her again).

Hopefully switching to a new chemo will help with some of my problems. It has taken quite a while for my insurance company to agree to subsidize it, and I'm supposed to receive my first dose today. This one is a pill that I'll take once every six weeks, rather than the five days our of every 28 of the Temodar. I'll still be getting infusions of Avastin every two weeks, and I'm beginning to wonder if that's what's making me feel so worn out and weak. Or it could be that sixteen months of treatment has taken its toll on me.

Anyway I haven't had any further seizures, although I've given up caffeine because it was causing premonitions of seizures, and I've taken a precautionary Lorazopam a couple of times when it felt as though something was getting started. The PA also wants me to work with my physical therapist to build up my core strength, but the PT has been sick for a couple of weeks, so we haven't started on that yet. I've been trying to take little mini-walks every day to see whether that helps. I hate feeling this weak!

But I'm trying to be patient. In a way, none of this is a surprise, but just because you know chemo is going to knock the stuffing out of you doesn't mean you'll be ready for how it FEELS. It feels like crap, and I begin to wonder how much more treatment I can take. I guess I'll see how the Lomustine makes me feel and what the MRI in August shows.
randy_byers: (Default)
I've been doing better at keeping up with my life here than I remembered. I was going to recap the Coachella Valley and Corflu trips, but I see I don't have to. Now I'm back from Micronesia, which I'll be writing about at greater length later. Short version is that it was an epic trip, both geographically and emotionally. However, one of the unpleasant occurrences out there, fortunately toward the end of the trip was that I had two seizures, the second of which I was able to nip in the bud with a drug called Lorazepam. I'll write more about this experience in my fuller trip report. My instant assumption was that the seizures were an indicator that the cancer had continued to spread and was interfering with normal neurological function.

Yesterday was the day of reckoning, as I got my first MRI since the one with the bad news in April or late March or whenever it was. My sister was here, having driven me up from Portland, where the Micronesian trip originated and ended. The MRI was not the only medical item on yesterday's agenda. First off were lab tests for the Avastin infusion scheduled for later in the day. Then the MRI. Then a visit with Dr Shetabi, who is a medical oncologist helping my neuro-oncologist, Dr Taylor, until she can hire more specialists. Dr Shetabi is a kindly old gent who has retired from his practice at Virginia Mason, but is temporarily helping out at the Alvord Brain Tumor Center. He wanted to know how my Micronesian trip had gone and seemed genuinely pleased that it had mostly gone very well. We talked about how I was feeling (exhausted) and about the seizures.

To my surprise, he didn't seem to care much about the seizures, other than to tell me to up the dosage of the daily anti-seizure drug I take. Then he let the cat out of the bag: the MRI showed that the cancer had been diminished since the previous MRI. That was completely the opposite of the news I was expecting, so it was kind of hard to digest. Shetabi advised us to savor the news and not get carried away by it. Time will tell whether the cancer is truly being beaten back, or whether it's just taking a breather. Still, it was hard not to feel like I'd gotten a reprieve. Shetabi thought it was the Avastin that had done the job, although I'm not sure why he thought it was that rather than the microdoses of chemo that I took daily during the trip, not to mention the emotional/spiritual boost of the trip itself. He didn't care to speculate about the cause of the seizures, but said it could have been any number of things (the long trip, the heat and humidity, etc) or combination of things.

In any event, I'm feeling a little whiplash, but I can't say it hurts. Going forward I'll continue with the biweekly Avastin infusions, and I'll get back on the Optune and on the old schedule of five days of 300 mgs of Temodar every 28 days. We'll see where I'm at at the end of the year, but Shetabi was hopeful that we'd be able to beat the cancer back enough for me to finally take a break from treatment. Other than having to get back on chemo, this was all welcome news. Dr Taylor had said we might try another form of chemo, and she'd even hinted we might try another form of radiation, like the cyberknife. Fortunately, the diminishment of the cancer in the meantime apparently pushed them in another direction, and I'm fine with that.

Despite the advice to take the news cautiously, I'll be celebrating this for a few days at least. I'm now taking a break from the Temodar until the heavier doses start next Wednesday or so.

Interim

Apr. 20th, 2017 08:02 am
randy_byers: (Default)
I'm just back from spending a week and a half with my family in Desert Hot Springs in Coachella Valley. When my bad health news hit, my mom and sister conspired to bring me down to Mom and Dad's winter home to spend some time in the sun being pampered. So LaVelle came to Seattle, and we drove south from here on I-5, picking up my brother in Corvallis along the way. The trip down was two days in which LaVelle and Lonnie did all the driving. I was theoretically capaable, but I honestly didn't feel like it, especially with a stick shift, which is something I'm no longer used to.

It was great to hang out with my parents and siblings, who once again rallied around me in a time of distress, and then my sister-in-law made a surprise visit, so the old gang (circa 1983) was back together again. The surprise was one of the many things that we had a good laugh about -- in this case that LaVelle and I were so oblivious to all the hints and near-revelations along the way. Our family is big on teasing, and this kind of thing gets spun around through teasing a dozen which ways. For example, why didn't we ask "What the hell?" when Lonnie said he was going off to meet somebody that none of us knew.

The laughter and self-mockery was good medicine, but I suppose in my current state of mind I couldn't help but be touched by two of the health crises happening while we were down there. One was my parents' friend, Russell, who suffered a terrible stroke around the time we arrived, which left him paralyzed and unable to swallow. His wife, Letha, stopped by toward the end of our stay, and she was barely holding it together. We had dinner guests that night, my parents' Canadian friends, Merv and Lorraine, and I could see that the stoic Merv, who is having health problem of his own, was barely holding back the tears.

Th other health crisis arrived with the couple from Manitoba who has just bought my aunt and uncle's house in the park, which is right next door to my parents. We had heard that the husband was having health issues, but by the time they arrived he'd had surgery that revealed a tumor on a blood vessel that the doctors thought could take him at any moment. His poor wife was completely distraught, because she was away from their medical system, away from home, and her phone didn't work in the US, so she had no phone if an emergency struck. She asked my mom if it was okay if she came and pounded on our door in the middle of the night. Of course it was. They had bought the vacation home before they knew the severity of the husband's problem, and now they were going to have to turn around and sell it immediately. The least of their worries, I'm sure.

Anyway, those two crisis certainly put my own crisis in perspective. Between that and the fun expeditions to look for the superbloom (a week past its prime, alas), ride the Palm Springs Aerial Tramway, and eat date shakes, I was feeling quite a bit better about my own predicament, at least until we started heading north. We took three days on the way back, taking Highway 395 up the East side of California for a change of view, and with our parents in tow as they migrated north to their summer home in Portland. This time I was able to help with the driving. (Another bit of teasing: because Lonnie had kept forgetting the clutch when he drove LaVelle's car and thus killed the engine quite impressively a number of times, I was always able to remember to use the clutch. Thanks, Lonnie!) The first day I drove I started to feel teary because it used to be something I did without thinking, but now I was hyperaware of what I was doing -- and thus hyperaware of the self-confidence that I had lost. I also felt completely decrepit getting into and out of car. When we got into Oregon, I started feeling teary because I wouldn't have the security blanket of my family around for much longer. Both Mom and LaVelle told me I was always welcome in Oregon if I needed a dose of family love.

LaVelle and I drove on to Seattle, and she stuck around to visit the oncologist with me yesterday. This was the first visit since the bad news that the cancer had returned, and I wanted another pair of ears with me to hear about what was next. It was a bit of an anti-climax on that front, because the main topic of conversation was about whether it was a good idea for me to go to Micronesia for three weeks in May with Lonnie and his family. We went around and around on the topic, discussing the question of how dangerous it was to leave the cancer untreated for three weeks. Dr. Taylor thought that the cancer had returned as soon as I stopped taking Temodar, and maybe that's why she came up with the idea of sending microdoses of Temodar with me on the trip (too small to debilitate me, but enough to combat the cancer). We're still working out the details of that idea, but I confess I felt relieved that she had thought of a treatment plan that would work while I was traveling. Knock wood.

When I get back from Micronesia, they'll do another MRI, and then we'll talk about the future. For now, however, the other interesting little thing that came out of the discussion was when LaVelle wondered whether my hoarse voice, which started as soon as we hit the road, was a byproduct of Avastin. Dr Taylor said yes, Avastin attacks blood vessels in the cancer, and sometime it attacks one in the vocal chords by mistake, with the result that your voice gets hoarse. Mystery solved, and it's not an answer I even considered. Once again, my family came through for me.

So, all my love to all my family. I feel completely vulnerable and uncertain about my future right now, and I can't begin to say how much their love and support helps me feel more safe and secure, whatever tomorrow may bring. I'm happy the Micronesia trip is going to happen, after it had started to look shaky. Next up on the travel front, however, is heading to Woodland Hills, CA for Corflu the weekend after next.
randy_byers: (2009-05-10)
Just a quick note to let people know that last Friday I had my first infusion of Avastin. I'll be getting these every two weeks going forward. Avastin is an artificial antibody that attacks the blood vessels that supply cancer tumors with sustenance, and thus prevents them from growing and spreading. The tech who started the infusion for me said that the drug is designed to seek out chemical markers for cancer, so it doesn't attack healthy tissue. They said the main side effect is usually elevated blood pressure, although they warn you that all kinda of bleeding problems, including strokes, happen in rare cases. So far, I'm experiencing no problems.

The goal, as briefly discussed with my neuoro-oncologist after I had the MRI done on Tuesday, is to make sure the tiny tumors don't grow while I'm traveling in the next month (first to Corflu outside LA at the end of April, and then to Micronesia for three weeks in May). When I get back from that it sounds like they'll be putting me on another form of chemo too, simultaneous with the Avastin. And of course I've still got the Optune glued to my head. It sounds like I could also try some clinical trials if I wanted to, but I can't say I'm too thrilled by the idea of being a guinea pig right now.

Ah well, friends have been stepping up to divert me from my woes, and next week I'm going out to my sacred place (the Olympic National Forest) with my cancer buddy Kristal for at least a couple of days. It's discouraging that the cancer has already returned, but life's not over yet, I'm actually still in pretty damned good shape, and I can always dream that other treatments will be more effective. Go, Avastin!
randy_byers: (cesare)
As some of you have no doubt heard through the grapevine (and others no doubt have not), I got my first post-chemo MRI yesterday, and the results were not good. They found tiny dots of cancer in the area where the tumor used to be, and, much scarier, they also found tiny dots of cancer on the other side of the well of spinal fluid in the center of the brain. That's a new location. My neuro-oncologist isn't sure whether it was still in the area hit by radiation, or on the edge of that, or outside the radiation treatment area entirely. Determining that is one of the first things she wants to do, because it will help her decide whether to advise me to get further radiation treatment or not.

Further treatment of various kinds is definitely going to happen. They are pushing to get me onto an IV drug called Avastin, which is the standard treatment for when GBM returns after the first-stage treatments. I don't fully understand how Avastin works, but I believe Dr Taylor said it attacks the blood vessels in the cancer. It's injected every two weeks, and if they can get it approved by my insurance company I'll take the first dose on Friday. Supposedly the most common side effect is elevated blood pressure, but there's a whole list of horrific side effects that are less common. The blood seeping out of my left nostril this morning is likely because my platelet count has crashed, according to the nurse I just talked to.

None of this was what I was expecting to be facing when I went in for the MRI and consultation yesterday. I thought I was going to be told that I was done with treatment (other than the Optune) for the foreseeable future. Instead I was essentially told that the past fifteen months of treatment didn't work, or was only a temporary restraint, and now we get to try some different treatments. The immediate goal is to prevent the tiny dots of cancer from growing and spreading. If that happens, there's danger that I will start to lose my cognitive abilities and physical coordination and/or start having seizures again. The hope is that we can stave the cancer off long enough for me to make my long-anticipated trip to Yap in May.

Probably needless to say I'm feeling deeply discouraged. All the talk of surviving onto the long tail now seems like a complete fantasy. Now I need to ask my friends to let me know if they observe me acting in an erratic way, and life begins to seem like a race against the cancer eating into my ability to think and communicate. If I can make the trip to Yap, I'll likely be trying another form of chemo when I get back. As for radiation, not only do I really, really NOT want to do more radiation, I question whether there's any point, considering that I've got cancer in the area they treated previously.

Ah well, no reason to worry myself to death right now. There's time to figure out what the next steps are, but I am, as the Little Feat song has it, sore displeased. Sorry to bear these bad tidings.
randy_byers: (2009-05-10)
I think it's worth noting that I have taken my last dose of chemo, hopefully for the rest of my life. My brain surgery was on December 10, 2016, so it has been over a year of treatment that knocked the crap out of me. Surgery, radiation+chemo, then twelve months of chemo. The chemo was on a 28 day cycle, so more of a lunar month, really. I should look into whether it really is some kind of witchcraft.

Anyway, I'll continue to use the Optune for the time being, but it doesn't make me feel like crap. The pattern of the chemo in the past few months was that I'd take it for five days, and then the nausea would kick in after the last dose, sometimes a couple days after. My neuro-oncologist said that this was a normal development as the body got more saturated with the chemo over time. This round I started feeling nauseated enough after my third dose that I began taking extra anti-nausea medication during the day. (Usually I just took the anti-nausea meds right before I took the chemo and went to bed.) Based on my last two rounds, I have five or so days of nausea ahead of me, and then I hope I can stop taking so many damned pills and start the recovery process. My previous neuro-oncologist said it could take a few months for me to get back to my status quo ante. I'm hoping I have a head start, but we shall see.

In the meantime, hallelujah, and get thee behind me, chemo! You will not be missed.
randy_byers: (yap)
Yesterday was a milestone of sorts. I saw an oncologist (not my new neuro-oncologist, but a sweet old medical oncologist who is filling in now and then during a transitional period), and he gave me the okay to start my twelfth and final -- FINAL! -- round of chemo. Yes, friends, fourteen months (nearly fifteen) since the tumor was discovered, the treatment phase is almost over. Amen, and hallelujah, brothers and sisters! I took the first dose of the chemo last night, and I'm not really feeling the effects yet. No doubt I'll soon enough be feeling fatigue and nausea. In the meantime, it's hard not to anticipate the celebration to come.

So I've started thinking about how I want to celebrate. One thing I've been dreaming of for a long time is getting back out to La Push for some nature therapy, and fortunately I have a friend who appears willing to take me out there. I may even be able to drive a little on this trip. (I haven't driven at all since the tumor was found, although I was legal to do so once it had been six months since the last seizure.) Other than that, should I throw a party? If nothing else it would be a good excuse to clean my room, which is another thing I haven't done since the tumor was found. It's pretty gross in here! So that's a good possibility, maybe in early April.

In late April I'll be going to Corflu in the LA area (arriving Thursday, departing Monday), which will be my first convention since Sasquan in August 2015. A week after getting back from that I'll be flying with my brother and his family out to a couple of islands in Micronesia. We're going to stop in Pohnpei to visit the mysterious stone city of Nan Madol -- the site, amongst other things -- of entry into the subterranean world in A. Merritt's The Moon Pool. Then onward to Yap for a couple of weeks. These are bucket list things to do. A last trip to Yap was the first thing I thought of when I started thinking about a bucket list.

Budget permitting, I hope to visit friends on the East Coast later in the year, and I hope to travel to Belgium and the UK in 2018. When I'm not traveling, I hope to be writing. The first writing project is to finish rewriting my TAFF report and to finally get it published. Another thing I'll probably work on at some point is to pull out all my LJ and Facebook posts about post-tumor life and see whether/how they read as a story. I had been thinking about putting together another collection of my fanwriting, but that seems less pressing at the moment.

Some of you may be wondering whether my treatment will really be over once the chemo is over. It's true that I will be given the option of continuing to wear the Optune. I've been told that it will be my choice, but I'll need more information and guidance before I make a decision about it. It's definitely a ball and chain to deal with, and so far there isn't enough data to draw any clear conclusions about how much additional time it would give me, especially as the way it's being used has been evolving. Anyway, I'll be getting an MRI in the middle of March to establish a post-chemo baseline, and I'll talk to my neuro-oncologist then about the Optune and quality of life.

There is still a fairly long list of practical/legal matters I've been putting off until after treatmen: a will; a living will; designating someone with power of attorney for me and someone to make medical decisions once I'm incapacitated. For now, however, I'm just going to think about celebrating the end of a long ordeal. Yippee-ki-yay!
randy_byers: (2009-05-10)
Diski In Gratitude.jpgThis book was recommended to me by [livejournal.com profile] ron_drummond. It's a cancer narrative of sorts, but it's also a memoir. Diski had a highly unpleasant childhood, with two dysfunctional and abusive parents, and an adolescence spent in and out of psychiatric institutions. Eventually, because she had gone to school with her son, Diski was invited to live with Doris Lessing, which she did for four years before Lessing decided she was a lost cause and kicked her out. Diski was the basis for Lessing's novel, The Sweetest Dream.

Diski eventually realized her childhood dream of becoming a writer and published a number of books, both fiction and non-fiction. In 2014 she was diagnosed with cancer and given two to three years to live. This book was the result of the diagnosis, and it was published in 2016 right before she died at age 68. I really struggled with it. I found her a very sour personality -- understandably so considering her difficult early life -- and I found her inability to reconcile herself to death strangely alien. (We'll see how that goes once my cancer really starts to eat me.) Her writing style is allusive in an almost stream of consciousness way, and I found the allusions hard to follow at times. I almost bounced off the book in the very first chapter, as she wrestles with how to write about cancer in a non-cliche way, going through all the conventional approaches that she desperately want to avoid. The self-consciousness was deeply unappealing.

Then, however, she moved on to her life with Doris Lessing, which I found more interesting, even if neither she nor Lessing comes off as a person I'd want to spend time with. But ultimately I was impressed with her honesty and willingness to delve into difficult, unresolvable feelings. As Ron said, she explores the way that gratitude and ingratitude define each other, and she's never sentimentalizes the way in which her own feelings about Lessing and life shuttle back and forth between the two poles. I'm prone to irrational optimism and sentimental romanticism myself, which is one reason I really struggled with the book, but I think her relentless investigation of fear, depression, and mental illness was a reality check I needed to receive. Not everybody has the privilege of a sheltered upbringing or of a loving family and circle of friends. In this section Diski also writes about the famous people Lessing hobnobbed with. Suffice it to say that Idries Shah comes off as a creep and an asshole in her accounting, but R.D. Laing comes off better.

By the end of the book, her free associations had a kind of magical realism to them, tying together completely disparate ideas and alternative, if not contradictory, theories into a unique vision and response to the conundrum of her life. I doubt I'm capable of resisting the cliches as powerfully as she did, but I ended up admiring her for the ability to do so and for creating a vivid depiction of the people she knew and the crazy, messy era of sex and drugs, literary heavyweights and mental hospitals she lived through.

Long tail

Jan. 26th, 2017 08:27 am
randy_byers: (2009-05-10)
I had an MRI and visit with my new neuro-oncologist yesterday. The MRI once again revealed that the tumor hasn't returned yet. My conversation with Dr. Taylor was an eye-opener to such an extent that I decided to sleep on it before sharing it with anyone other than my family and housemate.

I had some questions about survival rates, and in the course of asking I rehearsed the survival stats I was given in the beginning: an average of twelve months for people who don't take treatment, fourteen months for those who do, thirty percent survive at least three years, and only ten percent survive at least five.

"That sounds like the statistics for the whole population of people with glioblastoma," Dr Taylor said. "You need to look at the statistics for those like you who have the IDH1 mutation." She said they are now seeing that the IDH1 mutation makes a pretty significant difference in survival rates and that between having the mutation, the methylated MGMT gene (which is apparently highly correlated with having the mutation), being relatively young (under 60), having gotten most of the tumor out surgically (achieving 95% resection of the tumor is apparently more common in people with the mutation, and Dr Silbergeld seemed very confident that he had gotten as much of the tumor as humanly possible), and having survived the surgery in very good health, both physically and cognitively, she thought it was likely that my survival time would be on the long tail.

I don't know what that means exactly. I'd say it's still likely that the cancer will eventually kill me, but this still feels like a reprieve. My radiation oncologist, Dr. Halasz, was willing to say that all my favorable factors would likely put me in the 10% who live at least five years, but Dr. Taylor is saying something significantly different, to my ears. But what, exactly? That I have a strong chance of living for quite a while with this beast? I told her that my mom would be insufferable, because she's been saying this all along. I was going to be that guy who survived for twenty years and died of a heart attack, not cancer. I kept telling her she was in denial (at least in my internal dialogue with her), but maybe her optimism was correct all along. She's certainly feeling pretty smart right now.

"How was she able to understand?" Dr Taylor asked.

"She was a transcriptionist in a Pathology lab for a number of years."

"Ah, so she can actually read the lingo."

"Better than I can anyway."

The article about the mutation that I linked to echoes some of the stuff that Dr. Taylor told me while amplifying other things. They now think that the mutation occurs in some people when a lower grade glio moves up a notch. It also sounds as though one of the main helpful features, which is how I understood the positives of the methylated MGMT gene too, is that it works well with radiation and chemo to improve the body's ability to kill cancer cells. One section of the article talks about a study in which "the median survival in the IDH-mutant group was 163.4 months (13.6 years)". That was for one subgroup in the study. For another subgroup with the mutation the study showed a median survival rate of "118.7 months (9.9 years)." I can't say that I follow much of the technical discussion distinguishing the two subgroups, but either of those medians is far better than any median survival I've run into before. Of course this was one study of about three hundred people with GBM, 113 with the mutation, 222 without.

The article also says treatments are being developed to specifically target GBM patients who have the mutation. Again, the discussion is too technical for me to follow, but it all sounds pretty hopeful, which I assume is why Dr. Taylor was willing to be so optimistic right to my face. I feel torn between wild optimism on my own part and cautious skepticism. No doubt I'll need to read and discuss it further, but damn if I didn't immediately start thinking, "Maybe I *will* get to see Celine grow up!"

In other news, I started round eleven of chemo last night. Only one more after this one. I'm excited that chemo will soon be done, so I'm just feeling giddy in general today.
randy_byers: (2009-05-10)
Because not everybody reads Facebook or sees all the posts there. By the way, today is the anniversary of my brain surgery. That means I've survived a year already -- longer if you consider the fact that I clearly already had the tumor when I had my first seizure in early August 2015.

My last MRI, which was on November 30th, once again showed that the tumor has not returned, huzzah! I started my ninth round of chemo that night, and finished it the next Sunday. Three more rounds to go.

This has been my worst round of chemo of the nine. Two days after my last dose, I started struggling with nausea, but after getting a break from it on Thursday, it came back with a vengeance yesterday. Usually by this point in the cycle I'd be getting my appetite back and starting to take long walks again. It could be that the chemo in my body has built up to a saturation point. I'll talk to my new oncologist about that when I meet her later this month. The last three rounds have actually been increasingly difficult, nausea-wise, but the first time I thought it was because I didn't take an anti-nausea pill before the first dose and woke up in the middle of the night feeling horribly sick. I thought maybe that primed my body to react to the chemo with nausea. That continued to be my theory when last time the nausea hit me the day after my last dose. Now I'm beginning to think there's something else going on.

We'll see what the oncologist has to say. Friends are pointing out that I can quit the chemo if it's making me miserable. It's a good reminder, but I'd rather gut it out if I can. I got there with radiation too, but I stuck it out to the end.

Anyway, that's about it for now.

ETA: I've been reminded that today is the anniversary of surgery to remove my tumor. Not one I'm going to be celebrating, as much as I'm glad that the tumor was removed.

A friend also posted a pointer toward this article about cancer, fragility, and racism, which I have mixed feelings about, but it includes some great bits of quoted poetry.

From Whitman's "Song of Myself":

Has any one supposed it lucky to be born?
I hasten to inform him or her it is just as lucky to die, and I know it.

I pass death with the dying and birth with the new-wash’d babe, and am not contain’d between my hat and boots,
And peruse manifold objects, no two alike and every one good,
The earth good and the stars good, and their adjuncts all good.


And this from Tracy K. Smith's "Duende":

If I call it pain, and try to touch it
With my hands, my own life,
It lies still and the music thins,
A pulse felt for through garments.
If I lean into the desire it starts from—
If I lean unbuttoned into the blow
Of loss after loss, love tossed
Into the ecstatic void—
It carries me with it farther,
To chords that stretch and bend
Like light through colored glass.
But it races on, toward shadows
Where the world I know
And the world I fear
Threaten to meet.


"Love tossed into the ecstatic void." Story of my life, and it hasn't been a bad one.
randy_byers: (machine man)
The two great cliches of action shows, "This isn't over!" and "This ends now!" are flipsides of each other. (My Facebook post from December 2, 2015)

One year ago today, I walked to the University of Washington on my regular work commute. But instead of going directly to my office, I first went to the UW Medical Center Radiology Department to get an MRI of my head. We were trying to figure out why I had had a series of seizures starting the previous August. After the MRI I walked to my office, picking up a cup of coffee at Bean and Bagel along the way. As I sipped the coffee at my desk, I could feel a seizure coming on. Because my working theory for so long had been that the first seizure was caused by stress and anxiety, I wondered if this one had been triggered by the coffee. I tried to warn my officemates, Doug and Bill, about what was happening to me, but by then I had already lost the ability to speak. They soon figured out that something was wrong and called our boss, who called 911. The EMTs who checked me out suggested I go to my clinic and see a doctor about the seizure. So my boss drove me to the UW Medicine clinic at Northgate. My regular doctor wasn't available, although he spotted me in the lobby and came over to ask how I was doing. I suspect he had seen the MRI results by then, but I don't know for sure. In any event, there was another doctor who could see me. It was a longish wait before I was let into an examination room, probably because she was reviewing the MRI and discussing it with more senior physicians and preparing herself for what she had to tell me. As soon Dr Sairenji came in, I could see by her face that it was bad news.

She informed me that the MRI showed that I had a tumor in my brain, and the radiologist who read the MRI was calling the tumor glioblastoma -- which later really pissed off my neurosurgeon, because he felt only pathologists can determine the type of cancer, looking at cells from the tumor itself. In retrospect my guess is that an experienced radiologist can probably recognize glioblastoma from the MRI, even if they can't tell the exact type and grade, which is in fact incredibly important information, because Grade I and II are generally not terminal, whereas III and IV (my grade) are. Dr. Sairenji answered my questions and to reassure me as best she could. I'll never forget the sorrow on her face. She had never met me before, but she was the one who had to tell me I had potentially lethal cancer. When I started crying she gave me a light hug with one arm around my shoulders. The news actually wasn't a complete shock, because as soon as I'd had my second and third seizures, three months after the first, I began to wonder whether I might have a tumor. Still, I had tried to set that thought aside and to hope for better news. So in fact -- to heck with the nuance -- the news shocked me to the marrow.

I had called or texted Denys asking if he could come pick me up and take me home, because I knew I wouldn't be going back to work. As soon as I saw his concerned face and started telling him the news, I started sobbing, as he cursed furiously while welcoming me into a big, comforting hug. It was even worse when I got home and called my mom. I doubt it's difficult to imagine how little she wanted to hear my news. All I could think to say was, "I'm sorry. I'm sorry." Undoubtedly the hardest, most heart-wrenching conversation I've ever had in my life.

A lot has happened in the year since that day: surgery to remove the tumor, diagnosis of the tumor (confirming that it was glioblastoma, and of the worst kind), a course of simultaneous radiation and chemo, and then a longer (and ongoing) course of chemo and a new electromagnetic treatment technology called the Optune. It's been a long, hard road, but my family and friends swiftly closed ranks around me and have carried me on their backs through all the turmoil and trouble. My mom, sister, brother, sister-in-law, and Denys have all been particular champions, and I cannot possibly thank them enough for all they've done for me, from feeding me, accompanying me to doctor appointments, advising me when I was confused about the options facing me, and helping to pay off our remaining mortgage, to taking on most of the household chores and changing my Optune transducer arrays twice a week. Many, many other friends have corresponded, created single-issue, single-copy fanzines for me, come to visit, cheered me in Facebook and LiveJournal comments, walked with me to keep my strength up, shared their cancer treatment stories, sent me care packages and gifts of food, books, and music. It's been a crappy year of debilitating treatments, but I've learned a lot about love and friendship in the process, such as the fact that it can be completely invisible to you (or at least to me, Captain Oblivious) until you need it in the worst way. I haven't worked a single day since that first MRI, and I'm in the process of taking a medical retirement. I've made new friends who stepped in without hesitation to give me support. I have added many more Facebook Friends, many of whom I don't know personally, who follow me now because they know my Mom or my sister and want to follow my story, because it's part of their story. Old friends who I'd lost contact with are coming out of the woodwork as the news slowly filters into the world. People have been amazing.

It isn't all friends and family either. I've met with, talked to, and been treated by a phalanx of doctors, neurosurgeons, radiation oncologists, neuro-oncologists, nurse practitioners, registered nurses, receptionists, radiation techs, MRI techs, phlebotomists, clinical psychiatrists, nutritionists, Optune reps, pharmacists, long term disability insurance reps, Social Security Disability Insurance bureaucrats, University of Washington HR bureaucrats, and social workers. It takes a village to treat a cancer patient. Not all of them have been equally competent or caring, but in general I've found the people at the Alvord Brain Tumor Center and at the UW Medical Center as a whole to be very kind and helpful. Good people who are committed to quality of life for the terminally ill. Considering all the bureaucracy involved, it's kind of amazing how good the treatment has been.

A lot has happened in the last year and I'm hopeful that there's more amazement to come, but I thought it was worth marking that a year ago I walked through a door into an examination room and exited a stranger in a strange land that had such people in it.
randy_byers: (2009-05-10)
A few bits of good news from the past week, mostly having to do with insurance:

1) After receiving three letters from my insurance company saying that coverage of the Optune was being denied after all, I received confirmation from my oncologist that he was still confident they would relent in the end. Then came a fourth letter saying that, yes, they would be covering the Optune after all. The letter does not explain why they changed their tune.

2) After receiving two further forms to submit for SSDI and a third form received by Denys(!), I complained to Allsup, which is the third-party company hired by my long term disability insurance company (the Standard) to help me apply for SSDI (Social Security Disability Insurance -- a federal program in the US), and they said they'd intervene on my behalf. So this week I received confirmation that I had been approved for SSDI.

3) Yesterday I took the last dose of my eighth round of chemo. Only four rounds to go. I'm two-thirds of the way there and champing at the damn bit.
randy_byers: (Default)
2016-09-28 Optune Sore.jpg
A sore caused by the Optune


I know a lot of my friends are intrigued by the Optune, so, since I just talked to the oncologist about it yesterday, I figured I'd give a little report on how life with the Optune is going and what the future looks like.

Wearing the Optune certainly isn't all fun and games. The new version is much smaller and lighter, and that has made life easier, but I still have to pay attention to the fact that I'm connected to it and need to pick it up if I want to move anywhere. If it's plugged into a wall outlet, I need to make sure I unplug it before I move. If I'm not plugged into a wall outlet, I need to keep an eye on whether the battery is running out of juice. The biggest discomfort is that I have to wear it almost nonstop. The transducer arrays are literally glued to my scalp, so it can feel quite claustrophobic at times. A couple of weeks ago when I peeled the arrays off so I (or rather Denys) could put new ones on, it felt so good I started to cry. They warn you upfront that the most common side effects are headaches or irritation of the scalp. I haven't had any headaches, but the picture above is of a sore caused by the Optune a couple of months ago. It wasn't painful, and they gave me some non-stick gauze to put over it. After that it healed very quickly. Other than that there are occasional irritated spots that Denys makes sure he avoids when he puts the next set of arrays on.

As I think I mentioned earlier, over time I've learned that there are people who have been wearing the Optune for years. I wasn't sure what that meant, so yesterday I asked Dr Mrugala whether I'd be wearing the Optune after I finish chemo in March. What was interesting about his reply was that he basically said it would be up to me. What would I base my decision on?' I asked. Mostly how well I was tolerating it, he said, for example whether it was causing major scalp problems and whether I was able to wear it for an average of 75% of each day, as they prefer.

The reason I was asking him about the Optune was that I want to go to Yap next May. I asked him whether, if I chose to continue with the Optune, it would be okay to take a three week break while I traveled. No problem, he said. My impression from this part of the conversation was that they simply don't have enough data on the effect of the Optune to be able to give much advice. My pattern of usage (which they download into a database every month) and ultimate fate will be another data point in the research. Eventually I'll want to ask if there's any length of break that they *know* is too long, but my guess is they probably don't know. It's too long if the cancer comes back during the break. For all I know at this point, maybe the cancer comes back eventually whether you take a break or not.

My insurance company denied coverage of the Optune in the beginning, but Mrugala and the manufacturer appealed. While the appeal was being processed, the insurance company allowed me to start using the device. Now I've received three letters from them in the last week saying the appeal has been denied, because there's no proof that the Optune improves treatment outcomes and therefore use of it is merely "investigational," which they won't cover. Mrugala is confident that he and the manufacturer can persuade the insurance company to cover the device in the long run. Meanwhile, this bureaucratic battle makes me feel like a guinea pig on the frontlines of science.
randy_byers: (2009-05-10)
Last night I started my seventh round of chemo. I'm doing twelve rounds in this phase of treatment, so when I've done my fifth dose on Sunday, I'll be just over halfway through this phase of chemo. I think I've said that since the first couple of rounds, I've been rebounding more quickly from the five days of chemo -- my appetite comes back more quickly, and my energy for walking longer distances rebounds around the same time, which is about five days later. However, I'm also noticing something that seems like a cumulative effect of the chemo: most days I feel as though I'm swimming through molasses. I feel sluggish, lethargic, and mentally foggy. It could be worse! Last night I tried taking the chemo without the Ondansetron anti-nausea medication (which causes constipation) and woke up in the middle of the night feeling nauseated. Constipation it is, then. Or rather, it's the drugs I take to counteract the constipation.

A couple of weeks ago I had my annual "wellness check-up" with my personal doctor. Actually I switched to a new doctor, mostly because I wanted to go to a clinic that was closer to my house than the old one, but partly because my old doctor pissed me off by not ordering an MRI after the first seizure and especially by getting defensive when I went back to him after the tumor was found to try to get him to rethink his earlier decision. I had three nagging problems I wanted to deal with on top of the "wellness" stuff that the insurance company insists be checked on every year. One was the nagging pain in my left shoulder, which has felt a lot like the pain from rotator cuff tendinits in my right shoulder a couple of years ago. Another was a patch of persistently dry, chapped skin under my left big toe. Then there was my plugged right ear, which I couldn't seem to clear with my wax removal kit. The second two problems were relatively easy to deal with.

She assigned physical therapy for the shoulder problem. The physical therapist diagnosed the problem as bursitis, not tendinitis, on my first visit, but in his written notes he seems to be calling it everything: bursistis causing impingement that then causes tendinitis. I'm doing PT twice a week and home exercises every day, and it seems to be getting a little better already. He said it would take four to six weeks, which is a lot less than what it took for the tendinitis. I asked him if tai chi would help prevent these problems in the future (once I'm done with chemo), but he said basically I need to get back to the upper body strength exercises I was doing before I started treatment for the cancer.

Yesterday, after a PT session, I got an MRI and visited my oncology nurse practitioner. She was over an hour late for our appointment, during which time I had to argue myself out of believing that the delay was because the MRI had revealed a new tumor and she was preparing herself to deliver grim news. No such thing. The MRI showed no sign of a tumor. She showed me the last four, which capture the wound from the tumor removal collapsing and healing. Fascinating to see in a long range time lapse view.

However, she also told me that my oncologist, Dr. Mrugala, has taken what is essentially a promotion at the Mayo Clinic in Phoenix, effective in January. She has also decided to move on with her career, meaning I will be shifted over to a new oncology team midway through my treatment. Another nurse I worked with, Natalie, is already gone, which is why I've been hearing back from other nurses when I leave messages at her number. This causes me some anxiety, but I was placated by the fact that my old radiation oncologist, Dr Halasz, will be able to step in to provide some continuity. I actually didn't know how to feel when Carrie gave me the news, and I was a little surprised by how bereft I felt as it sank in. I've hardly ever seen Dr. Mrugala, who strikes me as more of a research scientist than a physician, and Carrie has been great, but I've never felt as much kinship with or sympathy from her as I did with Dr Halasz and her nurse, Gaia. But in my foggy mental and emotional state, any change is hard to process. It probably didn't help that Carrie was signaling some distress or uncertainty on her own part, or that I thought I caught a whiff of alcohol when she first entered the room. (That latter bit is completely scurrilous and probably just a product of my anger at how long I had to wait. I was seriously getting ready to walk out, I was so pissed.) I appreciated my Mom's suggestion that I may end up liking my new treatment team even better than the old one.
randy_byers: (2009-05-10)
Cost of Hope.jpgLabeled "A Memoir" on the jacket, this book is actually trying to do a lot of different things. The subtitle is "The Story of a Marriage, a Family, and the Quest for Life." In the blurbs, Judy Woodruff is quoted: "This extraordinary, memorable look inside the life of a loving family facing a terrible diagnosis raises urgent questions all of us need answered about the delivery and cost of medical care in our country." This book was given to me by my brother months ago, and now that I've read it I'll be curious to find out what he took from it, because I had a hard time with it.

It's a portrait of a man, Terence Foley, and of the author's relationship with and marriage to him, and it's the story of his battle with cancer. Scattered throughout is evidence that the book started out as two magazine articles about how much money that battle with cancer cost. I had problems with most of this, to be honest. Amanda Bennett was obviously deeply in love with her husband, but her portrait of him makes him seem like a Type A jerk to me. She portrays him as a larger than life genius, and he clearly was extremely bright and ambitious and driven. All of it seemed out-of-proportion to me. He comes across as over-bearing and arrogant. She portrays their relationship as tempestuous, with constant arguments and shouting at each other. Again, I think this is meant to show that they were passionately in love and deeply engaged and connected in ways that surpass reason, but I found the portrayal of their relationship just as irritating as the portrayal of Terence Foley. Maybe I just don't know enough super-ambitious, super-accomplished people, so they just seem alien to me. Their lives didn't look like much fun to me, but Bennett keeps insisting it was fun turned up to eleven.

As for the cost of battling cancer, I almost stopped reading the book because I found that part of the book so perverse. Who is it aimed at? Is she asking me to stop and think about what my treatment costs before I agree to try it? She ultimately admits that they didn't do so, because they had insurance that covered it. Me too! I don't think it's up to the patient to figure out whether the price of treatment is "worth it." If I was paying out of pocket (like one friend of mine is) it would be different, because then I'd have to think about debt, but the evidence seems to indicate that people who are about to die don't really give a shit about debt, for fairly obvious reasons. Ultimately I thought she might be aiming that part of the book at policymakers, because one point she makes is that through looking at the insurance bills after her husband died, she learned that different hospitals charge different prices for the same procedures and that different insurance companies pay different amounts/percentages for the same procedures. I would agree that this probably ends up making our health system inefficient and too expensive, but again, I think that's something that needs to be dealt with in law, not in my decisions about what treatments to take.

What kept me going through a book that irritated me over and over again was the story of Foley's struggle with cancer and Bennett's struggle to accept her beloved husband's mortality. There's another dimension to "the cost of hope" that she at least flirts with, which is whether the hope that the loved one will survive leads one to make bad decisions that cause suffering. She gets into the nitty gritty of their research into different treatments for kidney cancer that were just going into clinical trial at the time Foley was diagnosed, and that's all quite interesting. Yet while it shows you the difficulty of the some of the decisions they had to make, in the end it seems that they made good decisions that didn't prolong his suffering. So is this book going to help me make good decisions when the difficult decisions start to come? It's hard to say. The bottom line seems to be how much you are willing to suffer for a chance to live a little bit longer. When it gets to the point where they have to take drastic measures to keep you alive, that's probably not such a hard decision, but I have no idea what will happen if/when the tumor returns and they ask if I want to do another round of chemo, more surgery, or a new treatment for which they don't have much data yet. Reply hazy, ask again later.
randy_byers: (2009-05-10)
2016-08-22 Basalt layers.jpg
Basalt layers in Crooked River Canyon


From 1992 to 1996, there was a nightclub in downtown Seattle called, in full, And the Weathered Wall, the Purity Remains, but which was called The Weathered Wall by anyone who didn't want to sound like a pompous ass. The full name was painted on one of the walls of the club, and I thought it was attributed to one of the Romantic poets, but Google isn't helping me with that vague memory. In any event, I always loved the short name, and it was one of my favorite clubs in its brief existence, where I saw bands such as 7 Year Bitch, The Gits, Wayne Horvitz and Pigpen, Vexed, and Imij. They also had a DJ dance night called something like the Lemon Lounge, which was I believe my introduction to acid jazz. Lots of good memories.

None of this has anything to do with what I'm about to write about, which is my recent trip to Crooked River Ranch with my family, except for the theme of memory and the metaphor of the weathered wall. My family's house at CRR is on the rim of the Crooked River Canyon, which is cut through layers and layers basalt resulting from centuries of lava flows that happened thousands of years ago. Nothing like geology to make you feel like a blip in both spatial and temporal scheme of things. The basalt formations, including the walls of the canyon, are one of the most striking features of the area. They are weathered, just as are all the members of my family, excluding the youngest, my great niece Celine, who is still pretty fresh to the world at five willful years old.

We celebrated three milestones while I was there: my brother's impending retirement from Hewlett-Packard, where he has worked for over thirty years (his special dinner was crab louie); my impending retirement from the University of Washington, where I worked for 27 years (my special dinner was T-bone steaks --a favorite cut when I was a child); and my niece's 40th birthday (crepes for breakfast and home made chocolate chip mint ice dream after dinner). My niece was born pretty near the bicentennial birthday of the USA, so I guess we were also celebrating the country's 240th birthday. All of these milestones have a theme of aging in common, although mine has an added subtext of illness, of course. Age and illness are both part of the human weathering process. It's also interesting that both my sister and brother worked in one place for at least 30 years (for my sister it was the Salem School District in Oregon), and I would have made it if it hadn't been for those pesky cancer cells. Something in our family (or at least the three kids, because it wasn't true of our father) ran toward sticking in one job for as long as possible. Why was that?

2016-08-25 The log house.jpg
The log house


We've been taking vacations at Crooked River since my dad joined the sales team out there in the early '70s to supplement his teaching income during the summers. The Crooked River Ranch was developed by a businessman from Seattle, and one of the interesting things about it is that, unlike most resorts in the Central Oregon area near Bend, such as Sun River and Black Butte, it was aimed at working class customers. So it's a lower rent kind of place, with lots of trailers and double-wides on the lots, and businesses cluttering the benchland in the middle of the picturesque canyon, making the adjective questionable. (The canyon was halfway filled with lava at one point, then the river cut a smaller canyon into that fresh basalt, so there's two levels to the canyon.) My parents' log house is by no means low rent, and there are a lot of nice places around too, but the overriding impression when you drive around the ranch is not of wealth.

In any event, we have a lot of history out there, and a lot of good memories. It was great to spend an extended time with my family, being pampered by all of them. My family has always been close, but in the aftermath of my diagnosis, they've formed a protective circle around me that I find difficult to describe. LaVelle even drove up to Seattle and learned how to apply transducer arrays, and then drove me all the way (six hours) to CRR via Highway 97 (one of my favorite drives) so that we could bring the Optune along. Lonnie drove me home. My illness was the source of much conversation, of course. Little Celine kept telling me she was sorry I had bumped my head. I guess the transducer arrays looked like bandages to her.

But it's not always so easy to talk about my illness. When my brother got together with a couple of old college buddies to celebrate his retirement, we picked up Tom on the way to the pub, and when he got in the car, he started in on a non-stop barrage of very aggressive, foul-mouthed story telling about another friend of theirs. I know Tom is a motormouth and a great bullshitter, but he was so intense that my initial reaction was, "Will he never shut up?!!!" Lonnie and I talked about it later, and we agreed that he probably just didn't know what to say to me about what I've been going through. Later, after we met up with Steve, Tom seemed to calm down, and he and I even talked about my treatment a bit. I showed off the transducer arrays briefly.

2016-08-25 Foco and Janego.jpg
Tom, Lonnie, Steve, and Me at Three Creek Brewing in Sisters


I have to admit that the evening of the retirment party for me, I also got teary-eyed when I was thinking about it earlier in the day, because this is certainly not how I would have chosen to retire. It almost felt like a celebration of the cancer in some weird way, but that was just my perverse mood, I suspect. My sister also picked up a plastic skeleton to use for a Halloween decoration, and I became morbidly obsessed with the skeleton. I tend to be pretty sanguine about my fate from day to day, but clearly there's some anxiety percolating away in the inner depths. Maybe because the protectiveness of my family brings out a feeling of vulnerability, I came away from the vacation feeling more torn up than I generally do in my day-to-day life in Seattle, where I feel safe in my routines, as disrupted as they've been by treatment.

2016-08-25 Me and Mr Bones.jpg
Mr Bones and I share a morbid moment with my new tie-dyed t-shirt


At one point talk turned to my recent writing, and my niece, I think it was, suggested that I should write a memoir. This is appealing to me, because, narcissist that I am, my favorite thing to write about is myself, but at the same time it seems to me that my life has been so unremarkable and unextraordinary and aimless, there's not much there to interest anyone but those closest to me. Still, I want to focus on my writing as much as possible, and there's a lot of material in this LiveJournal, for example, that I could exploit for the purpose of a memoir, so I'll give the idea further thought. The only other idea I've had is to return to "Little Dog Talk," which is a story I conceived based on my experiences on Yap as a child and as an adult and also based on some of the stories I've heard about Yapese magic and mythology. I wrote a version of it under a different title many years ago and even workshopped it at a Taste of Clarion workshop at Potlatch (where Ursula Le Guin administered a chastening critique), and I've been rewriting it in my head ever since.

Although I felt like I slept a whole hell of a lot during the eight days I was down there, I did get in four hikes, including two down to the river, which involved steep inclines that were a bit of a challenge to my knackered stamina. Well worth it, however, to sit and listen to the river seeking its level and to enjoy the cool air and vibrant greenery. More worryingly, I've recently developed symptoms in my left shoulder that feel very similar indeed to what turned out to be rotator cuff tendinitis in my right shoulder a couple of years ago. I probably should have it checked out, although the idea of doing physical therapy while I'm still undergoing chemo is daunting. Something to talk to the oncologists about, I suppose. My next consultation is tomorrow.

2016-08-21 The quilting frame.jpg
Mom and LaVelle baste the quilt, while my niece and great niece play underneath (LaVelle and a lot of my female cousins could remember being the girls playing under the quilt years ago)


Of course this is all me, me, me, and I haven't gotten into any stories about Celine or about the quilt that my Mom is making for her and was working on the whole time we were out there. There's nothing about my dad's improved health or the health problems my mom's been having. Nothing about my niece's new commercial photography gig with a clothing company in Portland. Nothing about the ongoing sagas of my nephews' attempts to reach the next stage of adulthood, most of which aren't really my stories to share anyway. But should they go into a memoir? One of my challenges would be how to handle the stories that would potentially embarrass me or others. Of course, those stories are in many ways the most fascinating stories of all. Am I up to the challenge of finding a way to tell them with sensitivity and compassion?

I return to Seattle feeling more unsure of myself than when I left, which is a little irritating, because it makes me feel young and immature. I'd prefer to be more of a weathered wall myself, shaped by what I've been through but able to withstand the forces buffeting me. Maybe now's the time to embrace the sign I saw at Seattle Coffee Company today: Vulnerability Is Your Superpower.

2016-08-27 Basalt layers.jpg
The weathered wall
randy_byers: (2009-05-10)
Just a quick note that the MRI yesterday showed that the tumor still hasn't come back. Of course, there's no reason it should have come back, but I always start to worry right before the MRI. It was even worse this time because it appears that [livejournal.com profile] kateyule has had further brain surgery to remove some kind of cancerous mass. My thoughts are with her and David.

I've also received news that I've been approved for the Optune 2.0. The main advantage is that it's much, much more compact. I got to see one at the doctor's office yesterday, and not only is the field generator smaller, but the batteries are about an eighth as big as the old ones. It should be easier to carry around, so that's good. Unfortunately the transducer arrays haven't changed, so gluing those to the head twice a week remains a pain in the ass.
randy_byers: (2009-05-10)
I've had my latest monthly meeting (which actually happens every 28 days) with the nurse practitioner overseeing this phase of treatment, and that triggers thoughts of an LJ update even though I'm not sure there's much to report. The good news is that I've recovered from the chemo more quickly in the last two rounds, regaining my appetite for real food within a few days of the last dose taken. This means that I've put about half the weight I lost back on, which is good. In the past week, I've walked four miles on four different days. It exhausted me the first two times, but it was better the second two. Yesterday I had the time I spent in the medical center to rest from the first two miles of the walk, so that helped.

I'm "getting used to" the Optune. I put that in quotes because it's an ongoing process that I'm still uncertain about. After one experiment, I've stopped wearing the actual device in public, although I leave the transducer arrays on my head, hidden as much as possible under a hat. I had gotten two more wall cords to use when I'm at the computer or watching TV upstairs, but when I got my usage stats read last week, Mary warned me that I might be turning it on and off too much, which I decided I was doing when I got up to get a cup of coffee or to urinate, or the zillion other little things you want to do when you think you're sitting in one place for eternity. ("Oops, left the phone over on the nightstand!") So I'm back to using batteries during the day when I need to move around the house more, and just plugging into the wall at night.

I've also gotten permission from my treatment team to leave the Optune behind when I travel. I actually took it with me when I went to Portland for Father's Day last weekend, so I could at least plug it in at night. However, when I go to Canada for two weeks next month, I'll be taking the transducer arrays off and leaving everything behind. Part of the problem for an extended trip like that is that the transducer arrays have to be changed twice a week, and that requires a person who has been trained how to put them on. Denys does it here at home, but he's the only person in my life right now who knows how to do it. Eventually my sister is going to learn how, because Denys is going to be traveling himself later in the year and I'm hoping to spend a week with the family in Central Oregon in August.

I got permission to leave it behind when I travel, but obviously the less I use it the less good I get from it. Carrie, the nurse practitioner, said one of the reasons they're willing to let me take long breaks is that it's not the only treatment I'm undergoing right now. There's always the chemo too. I suppose my usage data and ultimate outcome will help them learn more about the device and what kinds of patterns of usage produce what results. One problem with brain cancer is they can't really monitor what's going on with the cancer cells except through looking for aggregates/tumors using the MRI.

Anyway, aside from treatment, my life has been full of visitations. [livejournal.com profile] ron_drummond spent a week here before his mother's memorial on the Oregon Coast. The Fishlifters came out for a week following Corflu in May. It's a little bit strange to see friends who are worried that they may not get a chance to see me again, but I remind myself that they're looking at the worst case scenario, where I only survive the average survival time of fourteen months. If things turn out more favorably for me, which seems likely at this point (knock wood! I actually had a dream in which I angrily warned myself not to get cocky about this), I'll see all these friends again, hopefully more than once.

In Portland last weekend I drank beer with Dan and Lynn Steffan, and I had coffee with my old college friend (and housemate), Carl Lesher, and his fiance, Cari. Their wedding is in July, and I hope to make it to that. I'm so happy for Carl, especially since I had a very favorable impression of Cari, whom I apparently last met, very briefly, at my old girlfriend Molly's wedding back in the '80s. In the meantime I'll be going to Canada to see Sharee for a couple of weeks in the first half of July. We'll be bopping around Vancouver Island in a rented RV for the first week, then we'll rent a car to drive to Edmonton to visit her brother, niece, great nephew, and maybe her aunt who lives on Mt Robson along the way. I haven't seen Sharee in seven years, so this will be something particularly special. It's always an adventure to hang out with Sharee.

So this latest phase of treatment has become more routine, and I'm still managing to live my life in the nooks and crannies of recovery. My abilities, both physical and mental are diminished, but at least I'm having some fun, by gum. Well, in between the bureaucratic paperwork anyway. (The latest is an application for SSDI.)
randy_byers: (2009-05-10)
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Dork alert!


Well, it's been a busy week or so in the cancer treatment saga. I was supposed to start my third round of chemo last Wednesday (May 25th), but my platelet count dropped too low, so the chemo was delayed. The interesting thing to me is that the platelet count had been fine (barely) the week before, but dropped after that, which indicates that the previous round of chemo I'd taken at the end of April was still at work. Or maybe it just takes your body a while to respond to the effects of the chemo, I don't know. Anyway, I had my platelets counted again yesterday, and they had jumped from under 90 to over 110. So I started round three of the chemo last night.

Meanwhile, I also finally got approval from my insurance company to use the new Optune technology for treating glioblastoma multiforme. Here's a short description of how the technology works. Basically the device creates low intensity electromagnetic fields that are applied to your brain via transducer arrays glued to the scalp (which has to be shaved), and these fields interfere with the mitosis of the cancer cells, preventing tumors from forming or spreading. Originally it was approved to treat GBM after tumors had recurred following normal surgical, radiation, and chemotherapy treatment, so it was a last ditch treatment when all other treatments had been tried. The results have apparently been so good however, that the FDA has approved it to be used before the tumor has recurred, during the second phase of chemotherapy that I'm currently undergoing.

Well, obviously a cutting edge high tech device like this is catnip to my science fiction friends, and I was pretty excited about it too when I first heard about it. But the more I learned about it, the more anxious I became. It's a complicated piece of equipment, with lots of parts, and in particular keeping it powered is a pain in the ass. There is a way to plug it directly into a wall outlet if you're going to be stationary (e.g., when you're asleep), but it you need to move around, you need to attach it to a battery. (They recommend that you apply the tumor treating fields for a minimum of 18 hours a day, seven days a week, so they prefer that you sleep with it on. This allows you to take short breaks during the day, e.g when you need to take a shower -- with a shower cap to keep the transducer arrays dry.) The batteries last three to four hours, so if you have to take that into account if you're going to be traveling, etc. There's a backpack for holding both the field generator and a battery, so you can carry it around with you, but you constantly have to be aware that you're tethered to this thing.

Perhaps even more of a pain is the application of the four transducer arrays to the scalp -- both sides and front and back. Both Denys and I concluded after watching the training video that I wouldn't be able to do it alone, so somebody who has been trained (which at this point is just Denys) would have to be there to help me. The woman who came out to show us how to use it thought I should be able to do it myself, since my head is large enough that the arrays shouldn't overlap in ways that require trimming, which is hard for patients to do themselves. However, I'm unconvinced. First of all, the arrays have to be applied in a slightly differently place every time, although in a fairly regular way (basically just a pattern of moving forward and backward so that the arrays aren't always glued to the same part of the scalp), and it would require me to be able to see the back of my head. Without an elaborate mirror set up, I just don't see how it's possible without somebody helping me.

So now I feel that I'm tethered and dependent. Obviously going out in public with the backpack, the bandages on my head (even if under a cap) and cords dangling between is going to draw attention. I'm basically feeling very uncertain and anxious right now, and it will take me a few days of living with this to know if I can stand it. Even minor things like taking off and putting on a shirt become more complicated. By the time we had finished the training session yesterday, I was mentally exhausted, but aside from getting irritated at having to carry the backpack around and wrangling the cords, living with the device overnight went okay. There's a fan on the field generator, and I think I need to set it somewhere while I'm sleeping that isn't so close to my ear as where I had it last night, but other than that I seemed to sleep okay.

Still a lot to figure out. Mary, who was the trainer and who will come by periodically to download the database that tracks usage statistics), advised that we change the transducer arrays every three or four days, and recommended that we choose a regular schedule of every Tuesday and Saturday. So Saturday is the next big milestone. When I take the old arrays off, I have to clean my head, reshave it, wash it with rubbing alcohol, then apply the new arrays. The arrays get a little warm too, and Mary said that exposing them to direct sunlight will cause them to malfunction, so I have to wear a hat or other covering when I go out. If my scalp sweats, it can loosen the arrays, so I have to be careful about that too. Hair stubble can both loosen the arrays and cause them to run hotter, because it takes more power to, um, transduce the fields when the arrays aren't in full contact with the skin. Lots of little details like that to worry about until I get a better feel for how this all works.

Maybe it won't be as bad as I fear. I'll be curious to see whether I'll be allowed to take longer breaks from using it, for example during the long trip to BC to see Sharee that I'm planning for next month.

Meanwhile I've also gotten a barrage of paperwork from my long term disability insurance company, so the bureaucratic nightmare isn't quite completely over. It's mostly stuff like direct deposit of checks and getting me signed up for SSDI so that they can pay me that much less, but it's all kind of a pain in the ass, especially when I'm feeling a little pissy and anxious to begin with. Just trying to take it one form and phone call at a time.

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More presentable?

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