Ever run into a situation where you were supposed to do something to make something else happen, but were never aware of what you were supposed to do or how to do it? Until it was too late, and your unknown oversight caused a full breakdown in, well, apparently the entire space-time continuum. And, if you have had that happen to you, has it ever made you very happy?
I'll explain.
During my 12 days of healthcare, my PA gave to me: "One reminder that after age 50 I should get a colonoscopy. Six suggested places. And two gentle reminders of the importance of doing this. What she didn't give to me was a referral authorization, an authorization ID, a date range for which the authorization is valid, and the number of visits approved.
This I learned from the gastroenterologist's office this afternoon, as my appointment is tomorrow morning. Damn it, I had to cancel the appointment.
"We can hold the appointment and you can try to get the doctor's office to get you the authorization this afternoon."
"No, I only have a rotary phone, so it could take me some time to dial. I'll just cancel."
"Do you want to find a date to re-schedule?"
"Absolutely. I will find some date in which I will attempt to re-schedule. If I'm being honest, I'm guessing it will be after my next physical. When my PA again gently reminds me I need to get this done. But certainly, I will find a date to re-schedule, and then I will try to remember all the things I need to get from my PA- referrals, letters of support, and whatnot."
Some of you may give me grief and reiterate what I know is true - this is something I need to do. And I was being very compliant and on track, until insurance red-tape derailed me. Dang. [multiple happy face emojis].
Monday, February 10, 2020
Thursday, February 6, 2020
Snow Sparkles
Once in every 8-9 years, the "slight chance of flurries" manifests in Austin. last night we got enough to add Snow Sparkles to the unicorn family.
Wednesday, February 5, 2020
Then Right on Grackle
Had my best Siri experience yesterday. I have it set to a female Aussie voice. Headed to dinner with my brother at a popular restaurant in east Austin, and Siri was giving me directions. She told me to take a right on Lancaster, then stay straight onto Chicken Street. Lived here a very long time. Almost certain there is NOT a Chicken Street. [Certainly, lots of chickens.] Then she said it again. I stayed straight, and found myself on Chicón. Might need to switch Siri to Latinx.
A follow-up. I told this observation at dinner, and Stacy said he once switched his Siri voice to C3PO. Which sounds like an amazing idea! He thought so as well, until he realized C3PO kept calling him "Master Stacy". Oh. Not an amazing idea, For lots of reasons. But I still love the concept, so I changed Siri to R2D2. I don't expect to ever be able to find anyplace ever again. Jill will inevitably not get this joke, saying "I don't watch Star Trek."
A follow-up. I told this observation at dinner, and Stacy said he once switched his Siri voice to C3PO. Which sounds like an amazing idea! He thought so as well, until he realized C3PO kept calling him "Master Stacy". Oh. Not an amazing idea, For lots of reasons. But I still love the concept, so I changed Siri to R2D2. I don't expect to ever be able to find anyplace ever again. Jill will inevitably not get this joke, saying "I don't watch Star Trek."
Thursday, January 30, 2020
So Far Not Awful
Just finished the first round of monthly chemo last night, and now have a leisurely three weeks till the next one.
People have been asking me how it's going, and I initially responded "so far so good."
That's not a precise statement. So I'm changing it to "so far not awful." Been eating, doing some exercise, food still tastes the way it should (still working on coffee and wine). Margaritas still taste delicious. I am hopeful it stays not awful through at least the first couple of months. You'll certainly read about it when that changes.
I think I promised a blog post on my "12 days of healthcare." Over the holidays, I went to a lot of doctors, partly to catch up on things I needed to do but had put off over the year. I came up with the outline of a disturbing version of the 12 Days of Christmas, but couldn't quite bring it over the finish line. So, I'll share the snippets that would have been part of what likely would have been an epic post and amazing new holiday song.
So, it would go like this:
On the 12th day of healthcare, my doctor gave to me:
12 Tappers Tapping - related to my search for a therapist to help me deal with, well, this whole sucky thing. Still looking, but have ruled out ones who focus on EMDR (thus the tapping).
Nine Tesla's Tesling - had three MRI's over the past few months, each at 3 Tesla's.
Six (point 2) A1c - had my blood sugar checked and it's actually not bad, even though my strategy for gaining back weight included a lot of sugary things.
Three distance lenses - lost my progressive glasses over the holidays. I worried I'd have to switch to "conservatives", but they allowed me to replace them with new glasses that still make me outraged by Cheeto Voldemort.
Two crowns a-chewing - got one new crown and had another one put back in after it popped off. I lost it taking a bite of untoasted sourdough bread, the most pitiful way to pop a crown ever.
And one col-on-os-co-py!!!! Actually just an appointment to talk to a dude about setting it up, but one is supposed to get one at age 50, and I have been putting this off. Mainly because I don't want to do it. But it would totally suck to beat brain cancer and then get taken out by colon cancer, or butt cancer, or whatever they are checking for.
I understand this may have veered a bit too far into TMI, but I also think that ship sailed a long time ago. And it's missing about half of the days of healthcare, but those would have been hilarious.
Someone can feel free to take this, run with it, record it, and please send me royalties.
Oh, and I just started a new phase. I'm calling this the "Indigo Girls" phase. Where I am starting to seek my source for some definitive. Been to the doctor, looked to the children, drank from the fountain, etc. Not found anything yet, but I have realized that "Closer to Fine" is not a bad song to get stuck in your head.
And one final observation. One I will chalk up to the new phase and possibly the chemo. I did have an extended sleep conversation with Beth this week, my old friend/girlfriend from almost 30 years ago who passed away several years ago. Only one data point, but if others visit, I might need to be concerned.
People have been asking me how it's going, and I initially responded "so far so good."
That's not a precise statement. So I'm changing it to "so far not awful." Been eating, doing some exercise, food still tastes the way it should (still working on coffee and wine). Margaritas still taste delicious. I am hopeful it stays not awful through at least the first couple of months. You'll certainly read about it when that changes.
I think I promised a blog post on my "12 days of healthcare." Over the holidays, I went to a lot of doctors, partly to catch up on things I needed to do but had put off over the year. I came up with the outline of a disturbing version of the 12 Days of Christmas, but couldn't quite bring it over the finish line. So, I'll share the snippets that would have been part of what likely would have been an epic post and amazing new holiday song.
So, it would go like this:
On the 12th day of healthcare, my doctor gave to me:
12 Tappers Tapping - related to my search for a therapist to help me deal with, well, this whole sucky thing. Still looking, but have ruled out ones who focus on EMDR (thus the tapping).
Nine Tesla's Tesling - had three MRI's over the past few months, each at 3 Tesla's.
Six (point 2) A1c - had my blood sugar checked and it's actually not bad, even though my strategy for gaining back weight included a lot of sugary things.
Three distance lenses - lost my progressive glasses over the holidays. I worried I'd have to switch to "conservatives", but they allowed me to replace them with new glasses that still make me outraged by Cheeto Voldemort.
Two crowns a-chewing - got one new crown and had another one put back in after it popped off. I lost it taking a bite of untoasted sourdough bread, the most pitiful way to pop a crown ever.
And one col-on-os-co-py!!!! Actually just an appointment to talk to a dude about setting it up, but one is supposed to get one at age 50, and I have been putting this off. Mainly because I don't want to do it. But it would totally suck to beat brain cancer and then get taken out by colon cancer, or butt cancer, or whatever they are checking for.
I understand this may have veered a bit too far into TMI, but I also think that ship sailed a long time ago. And it's missing about half of the days of healthcare, but those would have been hilarious.
Someone can feel free to take this, run with it, record it, and please send me royalties.
Oh, and I just started a new phase. I'm calling this the "Indigo Girls" phase. Where I am starting to seek my source for some definitive. Been to the doctor, looked to the children, drank from the fountain, etc. Not found anything yet, but I have realized that "Closer to Fine" is not a bad song to get stuck in your head.
And one final observation. One I will chalk up to the new phase and possibly the chemo. I did have an extended sleep conversation with Beth this week, my old friend/girlfriend from almost 30 years ago who passed away several years ago. Only one data point, but if others visit, I might need to be concerned.
Thursday, January 23, 2020
Squirrel!
From the combined opinions of Dr. Vaillant and a second opinion from Dr. de Groot at MD Anderson (I am de Groot. My brother suggested his name might be Ignatius Maximillian de Groot - or I.M. de Groot*), I re-start Chemo this Saturday. I will regale you all with my medical travels soon, from my holiday "12 days of healthcare" to my journey into the bowels of the Cancer Industrial Complex. But since ugly things may be re-starting soon, I feel the need to post some random pictures from the last few weeks, to distract from the pending poison resumption.
I'll start with a couple from Dallas, where I am now for a board meeting. I went out to dinner with my friend Chris last night, and the restaurant was next door to this. Not sure if tattoos will help with the cats, or how, but it's definitely worth a shot.
This is the inside of the front door to our administration office in Dallas. Now, I did some research into signage that prohibits weapons after our legislators basically gave the green light for every idiot with a gun to take said gun wherever they want, whenever they want. Businesses can opt out by placing signs with some very specific verbiage, with a very specific font size, and the regulations stipulate there must be at least two colors. This sign meets that requirement. And though it lacks the required language, is the wrong size, and in general does not meet any other of the very strict regulatory requirements intended to limit the limiting of guns everywhere, I believe that the biggest problem with this sign is its placement - on the back of the front door. Ensuring, at least, that employees who brought a weapon to work do not carry it into the hallway.
During the week leading up to the "resume Chemo" decision, things got a little dark for me. There is an SPCA very near my office, and one afternoon, on the way home, I stopped in for some puppy therapy. This is Duke, who looks strikingly like my dog Shoebox from my childhood. Shoebox was a good dog. I sent this picture to Jill, and she texted me "Where are you?" I told her.
I then sent her a picture of three Australian shepherd puppies, all already adopted, but tremendously cute little fluff balls.
Jill responded with "Get. Out. Of. There. NOW!!!"
I always listen to my wife, and she always knows what's best. So, If you want to meet Shoebox 2 and the Fluff triplets, text me.
And finally, there is Baby Sparkles. Jessica sent me a "Grow Your Own Unicorn" that I had not hatched. Knowing things are re-starting, it felt like it was time to bring Baby Sparkles into the Sparkles family. Seven days of soaking leave him a little slimy, but Dr. Rainbow Sparkles has accepted him into the Sparkles clan nonetheless.
* I tried this joke on Jill, who repeated "I don't know Star Wars." But still rolled her eyes.
Saturday, December 28, 2019
I'm Coming Elizabeth!
With apologies to Alannis Morrissette (and to Redd Foxx),
"Isn't it ironic, don't you think? It's like getting a brain tumor, going through treatment, making it to the end of the year, and then getting killed by Sanford and daughter on a short bike ride three days after Christmas."
It was a lovely day for a short bike ride, and bike rides aid in my recovery. So, I was just a couple of miles in to an ultimately 15-mile ride and I was behind a line of cars on a residential street. The front car pulled to the side, letting everyone else pass. Once the cars passed, I was right behind the pulled over vehicle, which turned out to be a pickup truck hauling a trailer filled with junk. I paused to see if they saw me and if I should also go around. When the truck didn't move, I started pulling around.
I passed the trailer and was next to the open driver's window when the truck started pulling back into the street. The street where I was. There was a woman in her 20's driving, and I looked at her and said "watch out." It was at a reasonable level of voice, and was simply a "I'm here, so be careful pulling out" admonition. She stopped pulling out, I went around, she went on her way. Everything fine, yes?
I thought so. The pickup truck pulled up next to me, and the dude in the passenger seat rolled down his window and started screaming at me. I wasn't entirely sure what he was saying or what specific infraction he was accusing me of. Having had other unpleasant interactions with cars (and angry people), I am pretty good at not escalating. So first, I ignored him and kept riding.
The truck pulls next to me again and he picks up yelling. I respond with a "it's all good. No problem." Then kept riding. Apparently not the response he wanted. Truck pulls next to me again. It's about here that I realize it's not just angry dude, since the woman is driving and is the one pulling next to me over and over again. He starts yelling again, and the words I pick up are something about his daughter pulling over to let people pass.
I tell him "I was just making sure she saw me." Also not the response he was seeking. But I keep riding. Truck pulls up next to me again. Dude keeps yelling. Honestly, I am tuning out most of it by now. But he ended with something like, "We are pulling over, and you are going to apologize to her. If you don't, I'm going to..." I really didn't hear the "or else" threat, but am clear it had some violence involved. Sure enough, they whip around, go up a bit, and pull to the side of the road.
Still in de-escalation mode, I am thinking of an acceptable apology.
"Sorry I verbalized a warning since you had made no indication of seeing me, and very likely were headed toward running me over. An encounter that would have certainly impacted both of us negatively, but I would wager would be worse for me. If I somehow startled or offended you in trying to ensure you didn't kill me, I truly regret that. Oh, and sorry your father is such an asshole. And since you are part of this whole thing, sorry your entire family is filled with assholes. And further apologies if your mom or a sibling or two are not assholes and I have just unfairly painted your whole clan with the "asshole" brush."
But realizing this wasn't likely a de-escalation, and also that I ride much faster than that and wouldn't get through the whole speech while passing them, I shortened it. I passed the truck, looked in the open window, and said "Merry Christmas." Then I kept riding.
The truck pulls back onto the street and whips around me again. It was about here that I wished I had listened closer to the threat he made. It occurred to me that my evasive maneuver depended on the threat. If he (or really his daughter) was going to try to run me off the road, I could ride up a driveway and through someone's XMas decorations. Certainly blow-up Santas are either deterrents or helpful obstacles. If they were going to pull over and he was going to get out to kick my ass, I would leave the dude in the dust. I outran two pit bulls trying to eat me once, hitting speeds close to 50 mph. Idiot angry junk man ain't never going to catch me. Give me three steps, give me three steps, mister. But if the threat was in someway involving guns, then I could, well, I could get shot. No easy evasive maneuver there, outside of movies or video games. But they kept driving. Possibly the "Merry Christmas" was enough.
"Isn't it ironic, don't you think?" It's like having multiple unpleasant encounters while cycling with young white idiots in pickup trucks, and the first one that actually seemed dangerous was with a middle-aged Hispanic junk man. And his daughter.
"Isn't it ironic, don't you think? It's like getting a brain tumor, going through treatment, making it to the end of the year, and then getting killed by Sanford and daughter on a short bike ride three days after Christmas."
It was a lovely day for a short bike ride, and bike rides aid in my recovery. So, I was just a couple of miles in to an ultimately 15-mile ride and I was behind a line of cars on a residential street. The front car pulled to the side, letting everyone else pass. Once the cars passed, I was right behind the pulled over vehicle, which turned out to be a pickup truck hauling a trailer filled with junk. I paused to see if they saw me and if I should also go around. When the truck didn't move, I started pulling around.
I passed the trailer and was next to the open driver's window when the truck started pulling back into the street. The street where I was. There was a woman in her 20's driving, and I looked at her and said "watch out." It was at a reasonable level of voice, and was simply a "I'm here, so be careful pulling out" admonition. She stopped pulling out, I went around, she went on her way. Everything fine, yes?
I thought so. The pickup truck pulled up next to me, and the dude in the passenger seat rolled down his window and started screaming at me. I wasn't entirely sure what he was saying or what specific infraction he was accusing me of. Having had other unpleasant interactions with cars (and angry people), I am pretty good at not escalating. So first, I ignored him and kept riding.
The truck pulls next to me again and he picks up yelling. I respond with a "it's all good. No problem." Then kept riding. Apparently not the response he wanted. Truck pulls next to me again. It's about here that I realize it's not just angry dude, since the woman is driving and is the one pulling next to me over and over again. He starts yelling again, and the words I pick up are something about his daughter pulling over to let people pass.
I tell him "I was just making sure she saw me." Also not the response he was seeking. But I keep riding. Truck pulls up next to me again. Dude keeps yelling. Honestly, I am tuning out most of it by now. But he ended with something like, "We are pulling over, and you are going to apologize to her. If you don't, I'm going to..." I really didn't hear the "or else" threat, but am clear it had some violence involved. Sure enough, they whip around, go up a bit, and pull to the side of the road.
Still in de-escalation mode, I am thinking of an acceptable apology.
"Sorry I verbalized a warning since you had made no indication of seeing me, and very likely were headed toward running me over. An encounter that would have certainly impacted both of us negatively, but I would wager would be worse for me. If I somehow startled or offended you in trying to ensure you didn't kill me, I truly regret that. Oh, and sorry your father is such an asshole. And since you are part of this whole thing, sorry your entire family is filled with assholes. And further apologies if your mom or a sibling or two are not assholes and I have just unfairly painted your whole clan with the "asshole" brush."
But realizing this wasn't likely a de-escalation, and also that I ride much faster than that and wouldn't get through the whole speech while passing them, I shortened it. I passed the truck, looked in the open window, and said "Merry Christmas." Then I kept riding.
The truck pulls back onto the street and whips around me again. It was about here that I wished I had listened closer to the threat he made. It occurred to me that my evasive maneuver depended on the threat. If he (or really his daughter) was going to try to run me off the road, I could ride up a driveway and through someone's XMas decorations. Certainly blow-up Santas are either deterrents or helpful obstacles. If they were going to pull over and he was going to get out to kick my ass, I would leave the dude in the dust. I outran two pit bulls trying to eat me once, hitting speeds close to 50 mph. Idiot angry junk man ain't never going to catch me. Give me three steps, give me three steps, mister. But if the threat was in someway involving guns, then I could, well, I could get shot. No easy evasive maneuver there, outside of movies or video games. But they kept driving. Possibly the "Merry Christmas" was enough.
"Isn't it ironic, don't you think?" It's like having multiple unpleasant encounters while cycling with young white idiots in pickup trucks, and the first one that actually seemed dangerous was with a middle-aged Hispanic junk man. And his daughter.
Wednesday, November 27, 2019
Gratitude
Here we are, a day before Thanksgiving, 2019. I am generally not one to be overly excited about he whole "what are you grateful for?" discussion after a large meal, but it seems appropriate this year, before the big meal.
I am grateful to be here, getting ready for Thanksgiving. I honestly can't say I had a lot of worry that I wouldn't, but looking back at the past seven months, I do get a bit of retroactive angst about how things could have ended up on that drive in May, and with all that has transpired.
I am grateful that the drive in May was not my last, and that no one, including myself, got hurt, and even the car somehow only got a tiny scratch. I have now had 30 or 40 driving experiences since then that have ended more expectedly.
I am grateful for Jill. She keeps me grounded and positive. She supports me doing things that help me heal, and helps me understand my boundaries, even as they change. She also single-handedly got the twins off to college. Jill is my love.
I am grateful all my girls are here for Thanksgiving. The twins are back, and both are enjoying college. Kai-Loo has been staying with us on and off, and doing her one-woman estate sales business as well as working on a research project with bats at Texas State.
I am grateful for family and friends, who have been supportive in a thousand ways. Too many to name, but some of the ways: calling and checking on me; bringing food; taking me to lunch; sending random funny greeting cards; sharing their own stories; sending a rainbow unicorn; supporting Jill, as she has had to deal with a lot this year; and reading my random thoughts and saying nice things.
I am grateful that I am no longer losing weight, and that food generally tastes the way it should. Two sad hold-outs: coffee and wine. But margaritas still taste fine. And I am very grateful for that.
I am grateful that I can cook again, and that I am both riding and writing. Those three things help me find my place in the world. I'm also grateful to be able to be back 100% at work, doing what I love to help vulnerable people in a difficult environment.
I am so grateful for all of these things. My Corner Pieces.
I am grateful to be here, getting ready for Thanksgiving. I honestly can't say I had a lot of worry that I wouldn't, but looking back at the past seven months, I do get a bit of retroactive angst about how things could have ended up on that drive in May, and with all that has transpired.
I am grateful that the drive in May was not my last, and that no one, including myself, got hurt, and even the car somehow only got a tiny scratch. I have now had 30 or 40 driving experiences since then that have ended more expectedly.
I am grateful for Jill. She keeps me grounded and positive. She supports me doing things that help me heal, and helps me understand my boundaries, even as they change. She also single-handedly got the twins off to college. Jill is my love.
I am grateful all my girls are here for Thanksgiving. The twins are back, and both are enjoying college. Kai-Loo has been staying with us on and off, and doing her one-woman estate sales business as well as working on a research project with bats at Texas State.
I am grateful for family and friends, who have been supportive in a thousand ways. Too many to name, but some of the ways: calling and checking on me; bringing food; taking me to lunch; sending random funny greeting cards; sharing their own stories; sending a rainbow unicorn; supporting Jill, as she has had to deal with a lot this year; and reading my random thoughts and saying nice things.
I am grateful that I am no longer losing weight, and that food generally tastes the way it should. Two sad hold-outs: coffee and wine. But margaritas still taste fine. And I am very grateful for that.
I am grateful that I can cook again, and that I am both riding and writing. Those three things help me find my place in the world. I'm also grateful to be able to be back 100% at work, doing what I love to help vulnerable people in a difficult environment.
I am so grateful for all of these things. My Corner Pieces.
Wednesday, November 20, 2019
A Sneak Peak of my Secret Turkey recipe
My Saturday ride included a handful of Mighty Fine friends (both fine people and teammates from Team Mighty Fine). Including Laura, who works at HEB corporate, and Pam, who made an impassioned defense of the little HEB on the corner that could. Or that at least can, sometimes. I believe I was clear that I love HEB, but I do admit my annoyance is at the Spectrum dudes, and I promise to not be so hard on the corner HEB.
It was with that new attitude that I stopped by the store this evening. First thing I notice - no Spectrum table next to the far door. Perhaps the guy from Target relayed my concerns and HEB made a change!
Sadly, no. I did my shopping clockwise, which is the scientifically proven most efficient way to shop. This way, I end my trip in produce, so my freshly chosen produce gets home fastest (it’s just like getting it straight from the farm! Ish).
But, dammit, Spectrum dudes weren’t gone, just moved to the middle of produce. So now, instead of blocking Metamucil and generic Tylenol, products I only occasionally need, I have to pass them to get to the bananas.
A new strategy is in order. Fortunately, I adapt quickly.
“Excuse me sir!”
“Oh, great. Can you tell me where the worshcheshire sauce is? I’m sure I’m not spelling that correctly, but it shouldn’t matter because I’m actually asking you out loud.”
“Well, um...”
“What about ghee? Or is it pronounced “jee”? It’s Indian, and it’s like butter. I’m pretty sure it’s jee. I was going to go to the Asian market across the street, but thought I’d check here first.”
“Actually, sir...”
“And do you have any idea what to do with jackfruit?” I keep buying it because it looks cool, but now I have three and have no idea if it’s even edible.”
“Actually sir, I don’t work here.”
“Don’t be so hard on yourself. Eventually you will sucker in someone with crappy internet and cable.”
So now I am coming up with my list of interesting and/or obscure products to confound Spectrum dude.
Olive loaf?
That memory pill made from jellyfish?
Those chips made from crickets?
Suggestions welcome.
It was with that new attitude that I stopped by the store this evening. First thing I notice - no Spectrum table next to the far door. Perhaps the guy from Target relayed my concerns and HEB made a change!
Sadly, no. I did my shopping clockwise, which is the scientifically proven most efficient way to shop. This way, I end my trip in produce, so my freshly chosen produce gets home fastest (it’s just like getting it straight from the farm! Ish).
But, dammit, Spectrum dudes weren’t gone, just moved to the middle of produce. So now, instead of blocking Metamucil and generic Tylenol, products I only occasionally need, I have to pass them to get to the bananas.
A new strategy is in order. Fortunately, I adapt quickly.
“Excuse me sir!”
“Oh, great. Can you tell me where the worshcheshire sauce is? I’m sure I’m not spelling that correctly, but it shouldn’t matter because I’m actually asking you out loud.”
“Well, um...”
“What about ghee? Or is it pronounced “jee”? It’s Indian, and it’s like butter. I’m pretty sure it’s jee. I was going to go to the Asian market across the street, but thought I’d check here first.”
“Actually, sir...”
“And do you have any idea what to do with jackfruit?” I keep buying it because it looks cool, but now I have three and have no idea if it’s even edible.”
“Actually sir, I don’t work here.”
“Don’t be so hard on yourself. Eventually you will sucker in someone with crappy internet and cable.”
So now I am coming up with my list of interesting and/or obscure products to confound Spectrum dude.
Olive loaf?
That memory pill made from jellyfish?
Those chips made from crickets?
Suggestions welcome.
Monday, November 18, 2019
I am a Lucky Sumbitch
Been thinking a lot about Grandpa Sid recently. More accurately, he seems to keep coming up. Like a cantankerous, foul-mouthed ghost watching CNN at full volume.
My aunt Randy texted my brother and me a couple of weeks back with the intriguing question:
"What did we write on grandpa's gravestone?"
"Um, Sid Smith, and a couple of dates a hundred plus years apart?
"Yes, but the phrase he wanted."
"Oh, that. He was a lucky sumbitch."
"OK, thanks. Do you remember the Hebrew?"
A bit of explanation is in order. Grandpa wanted that phrase, but he wanted it in Hebrew. Through six years of Hebrew school, I learned exactly five words* (English transliteration follows, as I can't find the Hebrew alphabet on my computer. Which is either a testament to my marginal tech skills or proof that my computer is anti-Semitic):
Father - Abba
Mother - Ema
Yes - Ken
No - Lo
God - Adonai
The best I could have done for grandpa's gravestone is something like:
Adonai (God)? Lo (no). Abba (father)? Ken (yes). Ema/Abba (mother-father)? Ken/lo (not exactly, but sometimes something close to that).
Aunt Randy decided to seek more professional assistance. I think one of my cousins found some relevant Hebrew. Possibly through google translate, but I have no idea. Randy did say that they found out Hebrew doesn't have a word for "sumbitch", so they had to do a more rough translation.
I kinda think Grandpa's "He was a lucky sumbitch" probably ended up being in Hebrew something like "He was blessed with many bounties by the God of Abraham, Isaac, and Jacob."
Last week I had a board meeting up in Dallas. We had a couple of new board members, so at the beginning of the meeting we all went around and introduced ourselves with some relevant information about our place in Refugee Services of Texas, our tenure, and then one "fun fact" about ourselves.
I actually have about seven fun facts. And no, I am not going to share them all now. You'll have to wait for a future blog post. But the one I did share also had to do with Grandpa Sid.
Long story a little less long - after re-districting removed him from his beloved Congressman Doggett's district, grandpa decided to run for Congress. As a family, we spent likely $200 on t-shirts, bumper stickers and yard signs (printed only on one side), with what is one of my few claims to fame - his campaign slogan: "At 95, Who Needs Term Limits?" An AP reporter did a story on him and it went global, and grandpa did morning radio shows and was featured in over 100 news articles. My slogan was included in the end-of-year Time Magazine as one of seven quotes of the year. Grandpa came in third (out of four) in the democratic primary, and I still write him in every time for US Congress district 10. The husband of one of my co-workers at the time was a documentary film-maker, and did this incredible 10 minute video on his run**, should you want to learn more (The More You Know!):
https://www.youtube.com/watch?v=O--E3WPsIsI
And then this last weekend was my birthday. I have had to revise and our postpone some of my goals for the year. Mainly the cycling goals. My "lose thirty-five pounds and get a bunch of new clothes that I couldn't have fit in since 1986" goal (one I didn't even know I had)? Check. But I pulled out of the MS150 and my 1/3 of the 1/2 Ironman in October.
I also had to give up on the "go a full year without a near death experience" goal. I need one of those signs on my bedroom wall "Days without an industrial accident ___", but "Years without a near death experience." Gotta start that one back to zero in 2020.
For several years my birthday goal was to ride the number of miles that matched my age. I kinda got this from grandpa Sid, who took up running in his seventies, and ran/walked the Capital 10,000 well into his nineties. For several years his goal was to "beat his age" - i.e. when he was 85, he wanted to finish the 10k in less than 85 minutes. I was successful in my "ride my age" goal till I had a wipe-out on a muddy trail on my 50th birthday. That year, I decided I was 36.
This year, I briefly set a goal of riding 54 miles in a day. I did quite quickly understand and agree with Jill's "Oh, hell no." So I revised the goal to 54 miles over the weekend. I rode with Jill and some friends from Team Mighty Fine on Saturday, going 31 miles. Then I went solo yesterday for 24 miles, adding up to 55 for the weekend (I had to have one to grow on!).
I was happy to ride with friends, and delighted that a bunch of friends joined me on my sorta-annual Hofbrau trip Saturday, and that two of my girls were home this weekend, and the other comes back next week. I am truly blessed with many bounties by the God of Abraham, Isaac, and Jacob.
* I did learn the alphabet, how to generally pronounce things, and then memorized the prayers that I needed to recite that helped me to become a man at the age of thirteen. Only in re-reading that am I seeing how that can be mis-understood. I only became a man in the biblical sense. Still problematic! I wore a suit, spoke Hebrew I didn't understand to a gathering of my parents' friends, and received about $10,000, several Cross pens, and a red lava lamp from Bobby.
** And then check out IMDB, where I was able to get Abby and Alex listed as cast members for the film "Sid Smith for Congress as "twins", and add this synopsis:
"After being redistricted out of his long-time congressional district (and thus losing his Rep Lloyd Doggett), Sid Smith - newspaper man, long-time Austinite, Realtor, 20-time winner of Cap10 K (from age 72 to 92), widow of Bert Kruger Smith, raconteur, sum-bitch, and outspoken liberal, decides that he will run for the seat at age 95. With little more than a couple dozen yard sides (printed on only one side), a catchy campaign slogan from his grandson Russell ("At 95, Who Needs Terms Limits?), and a handful of bumper stickers and t-shirts, Sid hits the trail in his long shot bid. Along the way, he garners international attention and builds momentum to the big election night, where he finishes...not last."
https://www.imdb.com/title/tt1387273/?ref_=fn_al_tt_1
My aunt Randy texted my brother and me a couple of weeks back with the intriguing question:
"What did we write on grandpa's gravestone?"
"Um, Sid Smith, and a couple of dates a hundred plus years apart?
"Yes, but the phrase he wanted."
"Oh, that. He was a lucky sumbitch."
"OK, thanks. Do you remember the Hebrew?"
A bit of explanation is in order. Grandpa wanted that phrase, but he wanted it in Hebrew. Through six years of Hebrew school, I learned exactly five words* (English transliteration follows, as I can't find the Hebrew alphabet on my computer. Which is either a testament to my marginal tech skills or proof that my computer is anti-Semitic):
Father - Abba
Mother - Ema
Yes - Ken
No - Lo
God - Adonai
The best I could have done for grandpa's gravestone is something like:
Adonai (God)? Lo (no). Abba (father)? Ken (yes). Ema/Abba (mother-father)? Ken/lo (not exactly, but sometimes something close to that).
Aunt Randy decided to seek more professional assistance. I think one of my cousins found some relevant Hebrew. Possibly through google translate, but I have no idea. Randy did say that they found out Hebrew doesn't have a word for "sumbitch", so they had to do a more rough translation.
I kinda think Grandpa's "He was a lucky sumbitch" probably ended up being in Hebrew something like "He was blessed with many bounties by the God of Abraham, Isaac, and Jacob."
Last week I had a board meeting up in Dallas. We had a couple of new board members, so at the beginning of the meeting we all went around and introduced ourselves with some relevant information about our place in Refugee Services of Texas, our tenure, and then one "fun fact" about ourselves.
I actually have about seven fun facts. And no, I am not going to share them all now. You'll have to wait for a future blog post. But the one I did share also had to do with Grandpa Sid.
Long story a little less long - after re-districting removed him from his beloved Congressman Doggett's district, grandpa decided to run for Congress. As a family, we spent likely $200 on t-shirts, bumper stickers and yard signs (printed only on one side), with what is one of my few claims to fame - his campaign slogan: "At 95, Who Needs Term Limits?" An AP reporter did a story on him and it went global, and grandpa did morning radio shows and was featured in over 100 news articles. My slogan was included in the end-of-year Time Magazine as one of seven quotes of the year. Grandpa came in third (out of four) in the democratic primary, and I still write him in every time for US Congress district 10. The husband of one of my co-workers at the time was a documentary film-maker, and did this incredible 10 minute video on his run**, should you want to learn more (The More You Know!):
https://www.youtube.com/watch?v=O--E3WPsIsI
And then this last weekend was my birthday. I have had to revise and our postpone some of my goals for the year. Mainly the cycling goals. My "lose thirty-five pounds and get a bunch of new clothes that I couldn't have fit in since 1986" goal (one I didn't even know I had)? Check. But I pulled out of the MS150 and my 1/3 of the 1/2 Ironman in October.
I also had to give up on the "go a full year without a near death experience" goal. I need one of those signs on my bedroom wall "Days without an industrial accident ___", but "Years without a near death experience." Gotta start that one back to zero in 2020.
For several years my birthday goal was to ride the number of miles that matched my age. I kinda got this from grandpa Sid, who took up running in his seventies, and ran/walked the Capital 10,000 well into his nineties. For several years his goal was to "beat his age" - i.e. when he was 85, he wanted to finish the 10k in less than 85 minutes. I was successful in my "ride my age" goal till I had a wipe-out on a muddy trail on my 50th birthday. That year, I decided I was 36.
This year, I briefly set a goal of riding 54 miles in a day. I did quite quickly understand and agree with Jill's "Oh, hell no." So I revised the goal to 54 miles over the weekend. I rode with Jill and some friends from Team Mighty Fine on Saturday, going 31 miles. Then I went solo yesterday for 24 miles, adding up to 55 for the weekend (I had to have one to grow on!).
I was happy to ride with friends, and delighted that a bunch of friends joined me on my sorta-annual Hofbrau trip Saturday, and that two of my girls were home this weekend, and the other comes back next week. I am truly blessed with many bounties by the God of Abraham, Isaac, and Jacob.
* I did learn the alphabet, how to generally pronounce things, and then memorized the prayers that I needed to recite that helped me to become a man at the age of thirteen. Only in re-reading that am I seeing how that can be mis-understood. I only became a man in the biblical sense. Still problematic! I wore a suit, spoke Hebrew I didn't understand to a gathering of my parents' friends, and received about $10,000, several Cross pens, and a red lava lamp from Bobby.
** And then check out IMDB, where I was able to get Abby and Alex listed as cast members for the film "Sid Smith for Congress as "twins", and add this synopsis:
"After being redistricted out of his long-time congressional district (and thus losing his Rep Lloyd Doggett), Sid Smith - newspaper man, long-time Austinite, Realtor, 20-time winner of Cap10 K (from age 72 to 92), widow of Bert Kruger Smith, raconteur, sum-bitch, and outspoken liberal, decides that he will run for the seat at age 95. With little more than a couple dozen yard sides (printed on only one side), a catchy campaign slogan from his grandson Russell ("At 95, Who Needs Terms Limits?), and a handful of bumper stickers and t-shirts, Sid hits the trail in his long shot bid. Along the way, he garners international attention and builds momentum to the big election night, where he finishes...not last."
https://www.imdb.com/title/tt1387273/?ref_=fn_al_tt_1
Thursday, November 7, 2019
My Annoyance is Half-Full
There are two ways to view the following interaction:
1) I am feeling better enough to start being annoyed again at stupidity. AND
2) Unfortunately, brain tumor plus radiation plus chemo didn't fundamentally change the way I interact with the world, making me a better person. Maybe a little, but judge for yourself:
I generally avoid the sad little local H-E-B that is really close to my house. To be clear, I love H-E-B, do most of my shopping there, and my most meaningful teenage job was at H-E-B #4 on Far West. H-E-B is a great local company, and is very philanthropic (something that matters a lot to me).
Certainly, it has joined the two annoying trends of simultaneously being both more full-service and no service. The stores built a bunch of infrastructure to cater to people who don't want to shop, but don't mind driving to the store. That seems half-lazy to me. If you are going to put on clothes, get in the car, and drive to the store, pick your own damn bananas. But live and let live, except that this specific trend required the re-purposing of most of the best parking spaces. It's annoying, or would be if I actually heeded the signs. I'll never park in handicapped spaces, and I am fine honoring "Parents with Children", "Expectant Mothers", "Having a Crappy Day" spaces, and the like. But if you are going to set aside the best parking spaces for "half lazy shoppers", I don't feel any obligation to honor that. Sorry if that means that I will occasionally get someone's groceries because I'm parked in spot A-205. Well, not actually sorry. My suggestion - go full-lazy and get the groceries delivered, or get out of your car and pick your own damn bananas.
I am a person who will always want to do my own shopping. But, that doesn't mean I'm all in for the other trend of full-on DIY grocery shopping. H-E-B has also upgraded the self-checking infrastructure. So, either they shop for you, or you have to do everything yourself. Weigh and price your own produce, re-stock the shelves, check yourself out, and at the store I frequent on Jollyville, there is now an expectation that you collect and bring in at least ten carts from the parking lot on each visit.
But I still love H-E-B! Except the pitiful one near my house. It's the size of large 7-11. It's been many different stores over the years, all of them pitiful. I think the last iteration was a Piggly Wiggly, or maybe a Skaggs. It's the kinda store that they know not to ask "did you find everything you were looking for?" Because no, people never find everything they are looking for there. If that was the priority, they would be shopping elsewhere. But sometimes you run out of olive oil, or need bananas. And it is very convenient.
It's pitifulness may have caused the store to need to seek additional revenue sources. That is the most generous explanation I have for the fact that for the past several months, every time I come into that store, I am accosted by a young man in a suit trying to sell me internet services.
"Excuse me!"
"Sorry, did I run my cart over your foot?"
"Excuse me sir, but are you in the market for internet services?
"No, I am in the market for groceries. Like literally, in this market to buy groceries."
"Can I ask you a question?"
"You mean a second question?"
"Who is your internet service provider?"
"Let me answer that with a question of my own. Do you know if they have ginger? The real store I shop at was out."
"Can I tell you about the specials we have going on at Spectrum?"
"That's three questions. And seriously? I need ginger, and you want to sell me re-branded Time Warner? Which is still just terrible Time Warner, with a new name."
And this happens every time I shop there. If you know me well enough, you know that I mean that literally this interaction, often word-for-word, happens.
I finally complained to management, and told whoever it was (some person in a red shirt I ran into - it's possible they didn't even work there), that this sales table further degrades my already bad shopping experience. And that I may have to change my last-minute, or can't-find-that-one-thing shopping, to the Randall's. Even if I have to pay six times as much. Which I will have to at Randall's.
I related this interaction to Jill, who felt I was justified in providing feedback to the guy in the red shirt (even if he worked at Target), but that I should leave the poor salesdude alone.
I see her point, and wish (on some level) that I came through this whole experience with more patience for annoying people trying to sell me things when I am just trying to live my life, and buy ginger. But also happy (on some other level, perhaps a darker level), that chemo and radiation did not change the essence of Russell. Which is the ability to be unreasonably annoyed at certain instances of mundane human interaction.
Feeling better these days!
1) I am feeling better enough to start being annoyed again at stupidity. AND
2) Unfortunately, brain tumor plus radiation plus chemo didn't fundamentally change the way I interact with the world, making me a better person. Maybe a little, but judge for yourself:
I generally avoid the sad little local H-E-B that is really close to my house. To be clear, I love H-E-B, do most of my shopping there, and my most meaningful teenage job was at H-E-B #4 on Far West. H-E-B is a great local company, and is very philanthropic (something that matters a lot to me).
Certainly, it has joined the two annoying trends of simultaneously being both more full-service and no service. The stores built a bunch of infrastructure to cater to people who don't want to shop, but don't mind driving to the store. That seems half-lazy to me. If you are going to put on clothes, get in the car, and drive to the store, pick your own damn bananas. But live and let live, except that this specific trend required the re-purposing of most of the best parking spaces. It's annoying, or would be if I actually heeded the signs. I'll never park in handicapped spaces, and I am fine honoring "Parents with Children", "Expectant Mothers", "Having a Crappy Day" spaces, and the like. But if you are going to set aside the best parking spaces for "half lazy shoppers", I don't feel any obligation to honor that. Sorry if that means that I will occasionally get someone's groceries because I'm parked in spot A-205. Well, not actually sorry. My suggestion - go full-lazy and get the groceries delivered, or get out of your car and pick your own damn bananas.
I am a person who will always want to do my own shopping. But, that doesn't mean I'm all in for the other trend of full-on DIY grocery shopping. H-E-B has also upgraded the self-checking infrastructure. So, either they shop for you, or you have to do everything yourself. Weigh and price your own produce, re-stock the shelves, check yourself out, and at the store I frequent on Jollyville, there is now an expectation that you collect and bring in at least ten carts from the parking lot on each visit.
But I still love H-E-B! Except the pitiful one near my house. It's the size of large 7-11. It's been many different stores over the years, all of them pitiful. I think the last iteration was a Piggly Wiggly, or maybe a Skaggs. It's the kinda store that they know not to ask "did you find everything you were looking for?" Because no, people never find everything they are looking for there. If that was the priority, they would be shopping elsewhere. But sometimes you run out of olive oil, or need bananas. And it is very convenient.
It's pitifulness may have caused the store to need to seek additional revenue sources. That is the most generous explanation I have for the fact that for the past several months, every time I come into that store, I am accosted by a young man in a suit trying to sell me internet services.
"Excuse me!"
"Sorry, did I run my cart over your foot?"
"Excuse me sir, but are you in the market for internet services?
"No, I am in the market for groceries. Like literally, in this market to buy groceries."
"Can I ask you a question?"
"You mean a second question?"
"Who is your internet service provider?"
"Let me answer that with a question of my own. Do you know if they have ginger? The real store I shop at was out."
"Can I tell you about the specials we have going on at Spectrum?"
"That's three questions. And seriously? I need ginger, and you want to sell me re-branded Time Warner? Which is still just terrible Time Warner, with a new name."
And this happens every time I shop there. If you know me well enough, you know that I mean that literally this interaction, often word-for-word, happens.
I finally complained to management, and told whoever it was (some person in a red shirt I ran into - it's possible they didn't even work there), that this sales table further degrades my already bad shopping experience. And that I may have to change my last-minute, or can't-find-that-one-thing shopping, to the Randall's. Even if I have to pay six times as much. Which I will have to at Randall's.
I related this interaction to Jill, who felt I was justified in providing feedback to the guy in the red shirt (even if he worked at Target), but that I should leave the poor salesdude alone.
I see her point, and wish (on some level) that I came through this whole experience with more patience for annoying people trying to sell me things when I am just trying to live my life, and buy ginger. But also happy (on some other level, perhaps a darker level), that chemo and radiation did not change the essence of Russell. Which is the ability to be unreasonably annoyed at certain instances of mundane human interaction.
Feeling better these days!
Monday, November 4, 2019
Thought I was Breaking Better
I may not be a facial hair kinda guy. Enjoyed the goatee for a bit, but I think at least 58% of that was that it covered the birthmark under my chin. I went a full month without someone asking me "what happened to your chin?" Think of that annoying question everyone asks you all the damn time, then imagine a period of time without someone asking you that question. It's nice, right?
But eventually, that ended up not being enough. Over the weekend, I decided I would divest of the facial hair in stages. First the goatee, leaving just the stache. I've never sported a mustache, and it is Movember. Which I think has something to do with mustaches. And November.
I was mainly worried that I would end up with a porn stache. Now I wish it looked like that.
But eventually, that ended up not being enough. Over the weekend, I decided I would divest of the facial hair in stages. First the goatee, leaving just the stache. I've never sported a mustache, and it is Movember. Which I think has something to do with mustaches. And November.
I was mainly worried that I would end up with a porn stache. Now I wish it looked like that.
I showed Jill, and her immediate response was, "that's a Hitler mustache." Nice.
We went to brunch with her sister, mom and stepdad. When her mom saw me, her first reaction? "You look like Mussolini."
Well, crap. It is definitely not a porn stache. It's a World War II fascist stache. A Fache? Fascache?
I asked, "Anyone know what Francisco Franco looked like? Or the leader of Yugoslavia?"
Gordon at least had a guess for who that was. "Tito?" And told me he could look at their vodka bottle when he got home to see if I looked like that.
Several relevant points here. All of us were a bit light on our World War II facts. I think there was a Tito in Yugoslavia at some point, and I do think they were in the Axis for a hot minute, but the inter-web tells me they renounced the Germans right away and then got invaded.
Second, and to me more important, I am absolutely certain that Tito, from Tito's Handmade Vodka, was NOT named for a strongman leader of Yugoslavia. If he was a strongman. I've actually met Tito (the Vodka guy), and he looks like a guy who makes vodka.
But then, in my internet research, I found Hideki Tojo, leader of Japan during WWII. And damn if my fascache didn't resemble his a bit too.
So right after brunch, the mustache went onto the scrap heap of history. Now I think I look a little like a skinhead.
Which is not great, but better than Hitler.
I'm taking bets on how long it will take for someone to ask about the red mark on my chin. I'm guessing it'll be less than 24 hours (and I realize I am just asking for it from all of you, but fine.). I'm working on better stories.
So far, all I have is:
"What happened to your chin?"
"Brain cancer."
A little harsh and random. I'll work on it.
Sunday, October 27, 2019
Able to Predict Slight Changes in Weather in a Single Bound
Several weeks further down the road, and things are looking up. I am eating, working, cycling, teaching, gaining some weight, and generally have enough energy to last through the day. By Friday afternoon, I am generally waning a bit, but can’t say that’s new. Or specific to me.
Got my next MRI two Fridays ago. I am going to try to go to this imaging place from now on. The tech asked my music preference (and put on a station to match!), and then, just before we started, she asked “would you like a warm blanket?”
“Why yes. I would in fact like a warm blanket.” And quite honestly, now I want that to be an option in other venues. I think a warm blanket is up there with sprinkles.
“Things that make everything better for $400, please, Alex.”
They do the MRI twice, once normal, and then they inject dye and do it again. I almost asked for a new warm blanket at the midpoint. Maybe next time. The only thing that could make this imaging place better is if they had a unique color of socks that I shouldn’t take with me, like green. But alas, their warm, non-slidey socks are blue, like the ones from the last place, where I specifically did not take them home.
Met with brave Dr. V yesterday to go over the results and talk about where things are. He started with “well, I’ve got good news and bad news.” I replied “Fuck!” but it may not have been out loud. It certainly was not how I wanted to start things.
Last visit, he told me that he would send out a sample taken from my original biopsy to do an additional test to see if there was either a protein, a chemical, a mutation, or maybe an alt-rock band present in the sample called MGMT. His bad news was that the lab told him there wasn’t enough material to test, but the good news was he is going to try a different lab. Why this is important is that MGMT - either the lack or the presence, whatever the hell it is, will tell us whether further chemo might be useful, though there really is no specific evidence.
“Jesus, Dr. V. That’s your bad news? What about the MRI?”
“Sorry, I looked at that earlier, and it looks the same.”
Lead with that next time, please. Or at least consider if what you are telling me is actually “bad news.” I actually think it was good news / neutral news. No specific new reason to go back onto bonus chemo for the next few months. What lab you use - not really news I care that much about.
So, backing up a minute. I had just had a follow up MRI, and was coming into see the doctor to review. When his first words are: “So, I have good news and bad news,” here are a few of the things I immediately thought:
“The bad news is that the tumor has blown up and is growing aggressively. The good news is that you likely will make it till at least Thanksgiving.”
Or...
“the good news is that the tumor is stable. The bad news is that you now have a flesh eating bacteria in your brain.”
By the way, should you not know this about me already, I’m a worst case scenario kinda guy.
Dr. V agreed that feeling better and eating totally outweighs bonus chemo, which he also seemed to admit hasn’t really been proven to do anything, but it might, and they’ve always done it.
He did ask me about other symptoms, and I told him about my micro-headaches.
I know how this is going to sound, but it may be all in my head.
I have been having small, short-lived headaches that seem like they are spread across where the ribbons of tumor might be. I don’t have any actual evidence of this, thus “all in my head.” Going back to worst case scenario me, I worried that the tumor was blowing up, or the flesh eating bacteria was, well, eating flesh.
But Dr. V surprised me. “You know, there have been several changes in the weather lately. When they did the biopsy in May, the hole they drilled likely changed the pressure inside your brain. You very well may be feeling the change in atmospheric pressure.”
“Wait! Are you telling me my brain is now a barometer?”
“Well, kinda.”
Not only is that not the bad news I worried about, that’s kinda awesome.
I told my brother about his and he agreed. “You were wondering what super power the radiation was going to give you. Maybe this is it?
We even came up with my new super hero name. I am Super Doppler. Able to detect changes in barometric pressure to help predict slight changes in weather.
Which would have come in handy last weekend. My powers were there, but I had not yet identified them or figured out how to use them for good. I flew up to Dallas Sunday, and had just checked into my hotel at 8:45 when my head tingled. Then my phone blared out a scary warning about a tornado coming right at me. Then all power in the hotel went out. Then Kaileigh, who happened to be in Dallas visiting her boyfriend Randall, and was a couple miles south of me, texted “there is a tornado on the ground north of us and headed toward you.” I asked her what one is supposed to do on the 4th floor of a Hyatt Place. And started wracking my Super Doppler brain to see if I remember a hotel being destroyed by a tornado. A hurricane, sure, but a tornado?
She told me to hunker down in the bathroom, which I did. I asked if she was safe, and she told me she, Randall and all their animals were hanging out in the bathtub. A “yes” would have been sufficient as an answer, but ok.
We all survived the North Dallas tornado. It passed about 1/4 mile from the hotel, headed straight toward my office, then went around it after taking out a lot of trees, power lines, and much of a Cheddar’s restaurant. Fortunately, no injuries, just lots of damage. I need to work on fine tuning my powers so as to be of use next time. And by the way, Super Doppler tells me it’ll warm this afternoon.
Got my next MRI two Fridays ago. I am going to try to go to this imaging place from now on. The tech asked my music preference (and put on a station to match!), and then, just before we started, she asked “would you like a warm blanket?”
“Why yes. I would in fact like a warm blanket.” And quite honestly, now I want that to be an option in other venues. I think a warm blanket is up there with sprinkles.
“Things that make everything better for $400, please, Alex.”
They do the MRI twice, once normal, and then they inject dye and do it again. I almost asked for a new warm blanket at the midpoint. Maybe next time. The only thing that could make this imaging place better is if they had a unique color of socks that I shouldn’t take with me, like green. But alas, their warm, non-slidey socks are blue, like the ones from the last place, where I specifically did not take them home.
Met with brave Dr. V yesterday to go over the results and talk about where things are. He started with “well, I’ve got good news and bad news.” I replied “Fuck!” but it may not have been out loud. It certainly was not how I wanted to start things.
Last visit, he told me that he would send out a sample taken from my original biopsy to do an additional test to see if there was either a protein, a chemical, a mutation, or maybe an alt-rock band present in the sample called MGMT. His bad news was that the lab told him there wasn’t enough material to test, but the good news was he is going to try a different lab. Why this is important is that MGMT - either the lack or the presence, whatever the hell it is, will tell us whether further chemo might be useful, though there really is no specific evidence.
“Jesus, Dr. V. That’s your bad news? What about the MRI?”
“Sorry, I looked at that earlier, and it looks the same.”
Lead with that next time, please. Or at least consider if what you are telling me is actually “bad news.” I actually think it was good news / neutral news. No specific new reason to go back onto bonus chemo for the next few months. What lab you use - not really news I care that much about.
So, backing up a minute. I had just had a follow up MRI, and was coming into see the doctor to review. When his first words are: “So, I have good news and bad news,” here are a few of the things I immediately thought:
“The bad news is that the tumor has blown up and is growing aggressively. The good news is that you likely will make it till at least Thanksgiving.”
Or...
“the good news is that the tumor is stable. The bad news is that you now have a flesh eating bacteria in your brain.”
By the way, should you not know this about me already, I’m a worst case scenario kinda guy.
Dr. V agreed that feeling better and eating totally outweighs bonus chemo, which he also seemed to admit hasn’t really been proven to do anything, but it might, and they’ve always done it.
He did ask me about other symptoms, and I told him about my micro-headaches.
I know how this is going to sound, but it may be all in my head.
I have been having small, short-lived headaches that seem like they are spread across where the ribbons of tumor might be. I don’t have any actual evidence of this, thus “all in my head.” Going back to worst case scenario me, I worried that the tumor was blowing up, or the flesh eating bacteria was, well, eating flesh.
But Dr. V surprised me. “You know, there have been several changes in the weather lately. When they did the biopsy in May, the hole they drilled likely changed the pressure inside your brain. You very well may be feeling the change in atmospheric pressure.”
“Wait! Are you telling me my brain is now a barometer?”
“Well, kinda.”
Not only is that not the bad news I worried about, that’s kinda awesome.
I told my brother about his and he agreed. “You were wondering what super power the radiation was going to give you. Maybe this is it?
We even came up with my new super hero name. I am Super Doppler. Able to detect changes in barometric pressure to help predict slight changes in weather.
Which would have come in handy last weekend. My powers were there, but I had not yet identified them or figured out how to use them for good. I flew up to Dallas Sunday, and had just checked into my hotel at 8:45 when my head tingled. Then my phone blared out a scary warning about a tornado coming right at me. Then all power in the hotel went out. Then Kaileigh, who happened to be in Dallas visiting her boyfriend Randall, and was a couple miles south of me, texted “there is a tornado on the ground north of us and headed toward you.” I asked her what one is supposed to do on the 4th floor of a Hyatt Place. And started wracking my Super Doppler brain to see if I remember a hotel being destroyed by a tornado. A hurricane, sure, but a tornado?
She told me to hunker down in the bathroom, which I did. I asked if she was safe, and she told me she, Randall and all their animals were hanging out in the bathtub. A “yes” would have been sufficient as an answer, but ok.
We all survived the North Dallas tornado. It passed about 1/4 mile from the hotel, headed straight toward my office, then went around it after taking out a lot of trees, power lines, and much of a Cheddar’s restaurant. Fortunately, no injuries, just lots of damage. I need to work on fine tuning my powers so as to be of use next time. And by the way, Super Doppler tells me it’ll warm this afternoon.
Tuesday, October 1, 2019
Apparently, He's Not Santa
Just starting to emerge from the latest, and most pernicious phase of this whole adventure. Honestly, I'm really starting to regret getting a brain tumor in the first place.
Appetite went to zero. Things tasted terrible. Stupid goal of getting below 200 pounds reached. Currently at 193 and have re-set my FitBit to congratulate me when I gain weight.
I did the first round of bonus chemo the week of Labor Day. I will never enjoy Labor Day again. Have had maybe three full meals since then. Lots of Ensure, popsicles, granola bars, and bananas. And by lots, I mean some combination that gets me to near 2,000 calories per day. Never thought I'd be counting calories, or that it would be to ensure I get enough.
Second round of bonus chemo was scheduled to start yesterday. We switched over to Dr. Vailliant's new practice and saw him last Friday. We talked about my food issues. I told him the synthetic cannabinoid, which although it has a pretty cool name, did nothing for me. I also told him of friends and family who answered my plausibly-deniable call for non-synthetic relief with, well, non-synthetic relief. Thanks to redacted, redacted, and especially redacted for the gummies, drops, and the chocolate covered espresso beans. Unfortunately, these solutions were also largely unhelpful.
Dr. V asked "have you tried anything (voice lowering), naughty?"
"Um, besides the edibles I just admitted to?" Doc, love ya, but I'm not sure you and I see our relationship in the same way.
"Like, chocolate, or some other sweets."
Oh! That's naughty for Dr. V. Yes, sugary foods are still edible, though still need to balance the whole diabetes thing. Should be in your chart somewhere.
I do admit that there have been a number of days when the vast majority of my caloric intake has been through a Starbuck's Venti Caramel Frappuccino (a naughty 510 calories).
I asked him about the costs and benefits of doing bonus round two.
He was typically circumspect about what the research shows, what we could do later, and what holding off means. To his credit, he did recommend we hold off on bonus round two, as eating, gaining energy (and weight), and getting back to some semblance of normal is the priority right now. So bonus round two is on hold, for at least four more weeks.
I am very excited about that, but have this irrational little voice in my head that is telling me, "great. You want to enjoy a freaking cheeseburger, so you just talked yourself out of life saving treatment."
You know what gets rid of that irrational little voice? A hefty dose of chemo. So keep it up, asshole, and I will poison you out of my head.
Dr. V did say that it takes about four weeks for the chemo effects to fully subside. I am at 3 1/2 weeks. And whether that is true or just helped me think things were on the verge of getting better, I am actually slowly starting to get there. Still not hungry, but the thought of food has moved from awful to neutral. I can slam an Ensure in 4 seconds. And not everything has an aftertaste of straw. Baby steps.
Oh, and I drove yesterday. Dropped off my dry cleaning, picked up a prescription, and went to the HEB to refresh my Ensure supply. About 1.2 miles round trip, but an amazing journey. Taking things slow. Won't do my cross-country tour of minor-league jai alai stadiums till November.
Small goals - eating; driving; gaining weight; exercising; then cycling. Getting back in touch with people. Repatriating the non-synthetic gifts I received with redacted, redacted, and especially redacted, should they want them back. I pulled out from this weekend's MS 150 and from the 1/3 of the Half Ironman late October. Those made me sad, but there is no way I could have been close to ready for either. Next year's goals.
And finally, trying to figure out what naughty things I should get. Been thinking about Sticky Toffee Pudding. Still in the mindset where I worry about eating something I really love, for fear of ruining it forever if it tastes terrible now. But I think I will just have to take that Sticky Toffee chance.
Appetite went to zero. Things tasted terrible. Stupid goal of getting below 200 pounds reached. Currently at 193 and have re-set my FitBit to congratulate me when I gain weight.
I did the first round of bonus chemo the week of Labor Day. I will never enjoy Labor Day again. Have had maybe three full meals since then. Lots of Ensure, popsicles, granola bars, and bananas. And by lots, I mean some combination that gets me to near 2,000 calories per day. Never thought I'd be counting calories, or that it would be to ensure I get enough.
Second round of bonus chemo was scheduled to start yesterday. We switched over to Dr. Vailliant's new practice and saw him last Friday. We talked about my food issues. I told him the synthetic cannabinoid, which although it has a pretty cool name, did nothing for me. I also told him of friends and family who answered my plausibly-deniable call for non-synthetic relief with, well, non-synthetic relief. Thanks to redacted, redacted, and especially redacted for the gummies, drops, and the chocolate covered espresso beans. Unfortunately, these solutions were also largely unhelpful.
Dr. V asked "have you tried anything (voice lowering), naughty?"
"Um, besides the edibles I just admitted to?" Doc, love ya, but I'm not sure you and I see our relationship in the same way.
"Like, chocolate, or some other sweets."
Oh! That's naughty for Dr. V. Yes, sugary foods are still edible, though still need to balance the whole diabetes thing. Should be in your chart somewhere.
I do admit that there have been a number of days when the vast majority of my caloric intake has been through a Starbuck's Venti Caramel Frappuccino (a naughty 510 calories).
I asked him about the costs and benefits of doing bonus round two.
He was typically circumspect about what the research shows, what we could do later, and what holding off means. To his credit, he did recommend we hold off on bonus round two, as eating, gaining energy (and weight), and getting back to some semblance of normal is the priority right now. So bonus round two is on hold, for at least four more weeks.
I am very excited about that, but have this irrational little voice in my head that is telling me, "great. You want to enjoy a freaking cheeseburger, so you just talked yourself out of life saving treatment."
You know what gets rid of that irrational little voice? A hefty dose of chemo. So keep it up, asshole, and I will poison you out of my head.
Dr. V did say that it takes about four weeks for the chemo effects to fully subside. I am at 3 1/2 weeks. And whether that is true or just helped me think things were on the verge of getting better, I am actually slowly starting to get there. Still not hungry, but the thought of food has moved from awful to neutral. I can slam an Ensure in 4 seconds. And not everything has an aftertaste of straw. Baby steps.
Oh, and I drove yesterday. Dropped off my dry cleaning, picked up a prescription, and went to the HEB to refresh my Ensure supply. About 1.2 miles round trip, but an amazing journey. Taking things slow. Won't do my cross-country tour of minor-league jai alai stadiums till November.
Small goals - eating; driving; gaining weight; exercising; then cycling. Getting back in touch with people. Repatriating the non-synthetic gifts I received with redacted, redacted, and especially redacted, should they want them back. I pulled out from this weekend's MS 150 and from the 1/3 of the Half Ironman late October. Those made me sad, but there is no way I could have been close to ready for either. Next year's goals.
And finally, trying to figure out what naughty things I should get. Been thinking about Sticky Toffee Pudding. Still in the mindset where I worry about eating something I really love, for fear of ruining it forever if it tastes terrible now. But I think I will just have to take that Sticky Toffee chance.
Monday, September 16, 2019
You Can’t Have Me Back
Something non-brain tumor and/or recovery related. (But quick update- still not really eating, a very amazing relative brought me something that has helped a little, bottomed out I hope at 195 and am slowly slowly slowly improving). But on to non-tumor related thing.
Got this in the mail today. Southern Living magazine wants me back. I’ve never subscribed to Southern Living magazine. It’s one of those magazines I avoid even in the Supercuts, while waiting for my turn. A six-year-old ESPN Magazine about the start of the 2013 NBA season is preferable, as is HairStyles Quarterly. And now that I no longer spend any time in the Supercuts, I don’t even get to scorn it anymore.
So why does Southern Living magazine think I am a lapsed reader? I don’t read anything in the genre - Racist Quarterly, MAGA Times, or Chicken Fried Everything. Yes, I am from the south and live there, but I fall squarely in the Neil Young side of the musical feud, not the Leonard Skinnard side. My only lapsed magazine is Wired, and they want me back as well. I do note that the return address is Alabama, so maybe they sent out these notices to everyone they could before the big sharpie hurricane hit.
Or possibly, is this a veiled racist attempt to get me back to my southern roots? As a proud, Southern, white male (maybe they didn’t quite get to the Jewish, progressive, Unitarian, social worker part).
Well, if the envelope didn’t definitively answer it’s own request - you never had me, and you will never get me back - the inside sealed the deal. First line “Russell Smith - you qualify for our special Senior Savings rate.”
Oh, hell no. To reiterate, ten cents off a bagel or a free extra southern pride magazine will never be worth the senior discount. I do not want your magazine. I do not want your senior discount. Take me off your stupid list. (And I hope you fared well from Hurricane Sharpie.)
So why does Southern Living magazine think I am a lapsed reader? I don’t read anything in the genre - Racist Quarterly, MAGA Times, or Chicken Fried Everything. Yes, I am from the south and live there, but I fall squarely in the Neil Young side of the musical feud, not the Leonard Skinnard side. My only lapsed magazine is Wired, and they want me back as well. I do note that the return address is Alabama, so maybe they sent out these notices to everyone they could before the big sharpie hurricane hit.
Or possibly, is this a veiled racist attempt to get me back to my southern roots? As a proud, Southern, white male (maybe they didn’t quite get to the Jewish, progressive, Unitarian, social worker part).
Well, if the envelope didn’t definitively answer it’s own request - you never had me, and you will never get me back - the inside sealed the deal. First line “Russell Smith - you qualify for our special Senior Savings rate.”
Oh, hell no. To reiterate, ten cents off a bagel or a free extra southern pride magazine will never be worth the senior discount. I do not want your magazine. I do not want your senior discount. Take me off your stupid list. (And I hope you fared well from Hurricane Sharpie.)
Thursday, September 12, 2019
Never Thought I'd Miss the Visual Hallucinations
So, side effects are annoying up to a point. Once they build and don't diminish, they can get really ugly.
Case in point - my hunger has not returned at all after last week's chemo. It hadn't been great before that, but the higher dose made me not want to eat anything. And made everything taste more and more like straw. One by one, the things I could eat fell away. Nothing sounded good, which matched exactly with the fact that nothing tasted good.
I joked about my stupid goal of breaking 200 pounds. Well, I'm at 196 and falling. I'm losing about a pound a day. At this rate, I'll be around zero by the end of March.
I have tried a few things. One of the doctors (I'm too weak to even remember which), got me a prescription for Marinol (synthetic THC). It has done absolutely nothing. No munchies, no profound insights, zilch. Sad!
Jill very gingerly recommended getting some Ensure. I think she was worried that I might freak out about drinking an old person's drink. I said bring it on. I need some calories. After a bit of reflection, I do worry that I will break down and join AARP after all, and that Depends aren't too far down my road.
But I need to eat, or drink, some meals. So she got me some neopolitan ice cream flavored Ensures. Some strawberry, vanilla, and chocolate. Things didn't start well. I started with a strawberry. If you have ever read "Fast Food Nation", you may remember that there is a section about the "flavoring industry" - a series of non-distinct chemical plants in New Jersey. Strawberry Ensure tasted like it came directly from a vat in the middle of that. And by the way, if you haven't read Fast Food Nation, you should.
Vanilla was a little bit better, but still kinda terrible. Chocolate was the "winner" - it was better than horrible, even approaching drinkable. I bought some actual neopolitan ice cream and plan to start making full-on Ensure milkshakes. But not strawberry. I may never be able to eat something strawberry again. Which is one of my fears. Assuming my tastebuds ever do come back, and I am ever hungry again, there are so many things I bet I won't want to eat anymore. But one step at a time.
I am forcing myself to eat. Any amount of food does make me feel better, and I know that getting into a routine of, well, eating, is good for me long-term. Profound, yes? And not from the synthetic cannabinoid!
During all of this, a surprising number of friends and family members offered me specific things one could eat that might help with hunger. With the failure of the marinol, I am retracting my polite declines of those offers. Likely best if we left it there, but if you were one who a) has an idea of what I am saying, and 2) might have something that could be useful and 3) would be willing to part with said useful thing, text or call me. Probably best to call.
Case in point - my hunger has not returned at all after last week's chemo. It hadn't been great before that, but the higher dose made me not want to eat anything. And made everything taste more and more like straw. One by one, the things I could eat fell away. Nothing sounded good, which matched exactly with the fact that nothing tasted good.
I joked about my stupid goal of breaking 200 pounds. Well, I'm at 196 and falling. I'm losing about a pound a day. At this rate, I'll be around zero by the end of March.
I have tried a few things. One of the doctors (I'm too weak to even remember which), got me a prescription for Marinol (synthetic THC). It has done absolutely nothing. No munchies, no profound insights, zilch. Sad!
Jill very gingerly recommended getting some Ensure. I think she was worried that I might freak out about drinking an old person's drink. I said bring it on. I need some calories. After a bit of reflection, I do worry that I will break down and join AARP after all, and that Depends aren't too far down my road.
But I need to eat, or drink, some meals. So she got me some neopolitan ice cream flavored Ensures. Some strawberry, vanilla, and chocolate. Things didn't start well. I started with a strawberry. If you have ever read "Fast Food Nation", you may remember that there is a section about the "flavoring industry" - a series of non-distinct chemical plants in New Jersey. Strawberry Ensure tasted like it came directly from a vat in the middle of that. And by the way, if you haven't read Fast Food Nation, you should.
Vanilla was a little bit better, but still kinda terrible. Chocolate was the "winner" - it was better than horrible, even approaching drinkable. I bought some actual neopolitan ice cream and plan to start making full-on Ensure milkshakes. But not strawberry. I may never be able to eat something strawberry again. Which is one of my fears. Assuming my tastebuds ever do come back, and I am ever hungry again, there are so many things I bet I won't want to eat anymore. But one step at a time.
I am forcing myself to eat. Any amount of food does make me feel better, and I know that getting into a routine of, well, eating, is good for me long-term. Profound, yes? And not from the synthetic cannabinoid!
During all of this, a surprising number of friends and family members offered me specific things one could eat that might help with hunger. With the failure of the marinol, I am retracting my polite declines of those offers. Likely best if we left it there, but if you were one who a) has an idea of what I am saying, and 2) might have something that could be useful and 3) would be willing to part with said useful thing, text or call me. Probably best to call.
Wednesday, September 4, 2019
The MRI Conclusively Showed...
...that:
1) there is still brain in there
2) there was no accidental chlorine spill (I only thought that for a hot second)
3) things didn't get worse
4) (and this is as concrete and optimistic as the Radiator would get) the tumor looks stable and "I think it even looks a little smaller." Calm down, doc!
Certainly, I had already downgraded my expectations for this first result. The Radiator and the Extender both thought this was all very positive. I just have some trouble getting really excited about "things aren't any worse!" Yay.
Yes, time and countless other MRI's will tell the tale. Three years from now, "things aren't any worse" is likely amazing news. But it's a slow growing tumor, and my nagging question is "would the MRI show more-or-less the same results even if I hadn't done the radiation & chemo?"
To anticipate one of my many doctors: "possibly. But radiation and chemo has proven to be effective in stabilizing tumors like yours, and we will monitor you with MRI's several times a year to ensure that we know when it no longer is stable."
Well, fuck you very much, you amalgamation of non-committal doctors I just created.
I am also excited that I may actually reach my one very random, very stupid goal. I have not been under 200 pounds since likely 1996 (March 17th, 3:29 am - don't ask). My chemo diet had me within spitting distance (admittedly, it would be a LOT of spit - 1.2 pounds to be exact), till I found the proverbial corner, turned it, and only 67% of my food tasted like straw. Got back up to 203 pounds, stupid goal slipping away... Well, I re-started chemo, and will be on it for six months (a week on, three off). And the straw percentage ramped back up to 91.5%. Bring on the stupid goal! I will get your respect, Strava!
And once I get there, I now have my next stupid goal. Likely you've already figured this one out.
Can one actually generate 1.2 pounds of spit? Seems like a question for Mr. Owl.
1) there is still brain in there
2) there was no accidental chlorine spill (I only thought that for a hot second)
3) things didn't get worse
4) (and this is as concrete and optimistic as the Radiator would get) the tumor looks stable and "I think it even looks a little smaller." Calm down, doc!
Certainly, I had already downgraded my expectations for this first result. The Radiator and the Extender both thought this was all very positive. I just have some trouble getting really excited about "things aren't any worse!" Yay.
Yes, time and countless other MRI's will tell the tale. Three years from now, "things aren't any worse" is likely amazing news. But it's a slow growing tumor, and my nagging question is "would the MRI show more-or-less the same results even if I hadn't done the radiation & chemo?"
To anticipate one of my many doctors: "possibly. But radiation and chemo has proven to be effective in stabilizing tumors like yours, and we will monitor you with MRI's several times a year to ensure that we know when it no longer is stable."
Well, fuck you very much, you amalgamation of non-committal doctors I just created.
I am also excited that I may actually reach my one very random, very stupid goal. I have not been under 200 pounds since likely 1996 (March 17th, 3:29 am - don't ask). My chemo diet had me within spitting distance (admittedly, it would be a LOT of spit - 1.2 pounds to be exact), till I found the proverbial corner, turned it, and only 67% of my food tasted like straw. Got back up to 203 pounds, stupid goal slipping away... Well, I re-started chemo, and will be on it for six months (a week on, three off). And the straw percentage ramped back up to 91.5%. Bring on the stupid goal! I will get your respect, Strava!
And once I get there, I now have my next stupid goal. Likely you've already figured this one out.
Can one actually generate 1.2 pounds of spit? Seems like a question for Mr. Owl.
Tuesday, September 3, 2019
Does Brain Tumor = Unsound Mind?
I have discovered so many things that having a brain tumor prohibits me from doing. Driving, of course. At least for now. Depending on the day, seeing objective reality. I’m hoping that’s done. Growing a mullet. Wasn’t a goal, but it’s now off the table.
One thing that a brain tumor doesn’t hinder, apparently, is jury duty. Travis County thinks I would be a useful cog in the wheels of justice. Do wheels have cogs? And having done this before, it’s more the wheels of very pitiful misdemeanors.
My last journey into the wheel cogs of civil misdemeanor justice was being on a Travis County jury six years ago. Some drunk moron (it’s in the trial transcript) mouthed off at a cop while in line for a bar. He had an open beer in his pocket and was so drunk he vehemently denied said beer, which was clearly there. Still would have been fine, except he decided to say stupid things to the police, which got him a charge of public intoxication. Maximum penalty - $200 fine. But this genius needed his day in court. So seven jurors spent a day off work to provide him that opportunity. Add in the judge, prosecutor, court personnel, and even the police officer who recounted said drunk man with open beer in his pocket, and the cost to Travis County, including lost productivity, was around $8,914.62. All for the possibility of a $200 fine.
We found the idiot guilty, and assessed a $1 fine. You might get from this that I don’t like jury duty. I do. I love being civic. A perfect day for me might be a walk on a civically funded hike and bike trail, followed by jury duty, and then a trip to the library.
But it has been a tough summer. So I admit I looked on the summons for an out. I am a citizen. I’m registered to vote. I can read and write. I (think) I am of sound mind and good moral character. Even with the tumor, I feel fairly confident in my morality. There was an out for medical reasons, but you need a doctor’s note. I have so many doctors, and they seem to be in flux, it didn’t seem worth getting my medical records, finding a notary, and submitting to the County exam. So I went on-line and signed up. I am set for late September. Might need a ride.
Then, yesterday, two weeks after the jury duty summons, I got a letter from Travis County. I thought it was a helpful paper reminder. No, it’s a jury summons. I am hereby ordered to the same damn thing three days after my scheduled jury duty.
Certainly, there has to be an out in this situation, right? But using my non-diminished reading skills, I realized that there is an exemption only if you get impaneled. So they can keep calling me. I could theoretically get a summons a day until I actually get on a jury. Which might lead to me trying to get on a jury, which certainly would be evidence of bad moral character, yes?
One thing that a brain tumor doesn’t hinder, apparently, is jury duty. Travis County thinks I would be a useful cog in the wheels of justice. Do wheels have cogs? And having done this before, it’s more the wheels of very pitiful misdemeanors.
My last journey into the wheel cogs of civil misdemeanor justice was being on a Travis County jury six years ago. Some drunk moron (it’s in the trial transcript) mouthed off at a cop while in line for a bar. He had an open beer in his pocket and was so drunk he vehemently denied said beer, which was clearly there. Still would have been fine, except he decided to say stupid things to the police, which got him a charge of public intoxication. Maximum penalty - $200 fine. But this genius needed his day in court. So seven jurors spent a day off work to provide him that opportunity. Add in the judge, prosecutor, court personnel, and even the police officer who recounted said drunk man with open beer in his pocket, and the cost to Travis County, including lost productivity, was around $8,914.62. All for the possibility of a $200 fine.
We found the idiot guilty, and assessed a $1 fine. You might get from this that I don’t like jury duty. I do. I love being civic. A perfect day for me might be a walk on a civically funded hike and bike trail, followed by jury duty, and then a trip to the library.
But it has been a tough summer. So I admit I looked on the summons for an out. I am a citizen. I’m registered to vote. I can read and write. I (think) I am of sound mind and good moral character. Even with the tumor, I feel fairly confident in my morality. There was an out for medical reasons, but you need a doctor’s note. I have so many doctors, and they seem to be in flux, it didn’t seem worth getting my medical records, finding a notary, and submitting to the County exam. So I went on-line and signed up. I am set for late September. Might need a ride.
Then, yesterday, two weeks after the jury duty summons, I got a letter from Travis County. I thought it was a helpful paper reminder. No, it’s a jury summons. I am hereby ordered to the same damn thing three days after my scheduled jury duty.
Certainly, there has to be an out in this situation, right? But using my non-diminished reading skills, I realized that there is an exemption only if you get impaneled. So they can keep calling me. I could theoretically get a summons a day until I actually get on a jury. Which might lead to me trying to get on a jury, which certainly would be evidence of bad moral character, yes?
Monday, September 2, 2019
The After Before
My after is about to end. And I was just starting to enjoy it. Kinda. About 10 days ago, the world returned more or less to its expected movement. It took several weeks and happened in fits and starts. Little by little, the bonus effects have gone away. Tapering off the steroids helped me start to sleep past 4 am.
I started walking a bit. Then riding a bit. Still early in getting back into riding shape. I pulled out from the MS 150 in early October, but still plan to do the biking part of the 1/2 Iron Man in late October.
I’ve pushed back any thoughts of driving to at least October. I think legally I probably could now (past 3 months since my last recognizable seizure), but I want to be way past my “acid trip month” before I even try.
I did return to mostly normal life, albeit without driving (but with unnecessarily complicated words like “albeit”). I traveled to Dallas last week for work, flying and Lyfting. I started teaching Thursday night.
Side note on my Lyft experience, generally the rides have been great - fast, a minimum of questions, efficient. I do have to say that the last one, with Donovan, from the Austin airport to home, was the outlier. When I was getting in the back, he said “no, you can sit up front.” Um, ok. Up front with the unpleasant music, and the blue strobing light that flashed to the unpleasant music beat. Donovan asked me about my job, talked about the weather, Austin, traffic, road construction, and football, and this was all before we got out of the freaking airport. It did not get any better the rest of the way. On the plus side, Donovan got me home in 15 minutes. I live about 22 miles from the airport. There is no way the drive should have taken only 15 minutes.
One thing that hasn’t gotten better is my appetite and how things taste. Which is bad, and like straw, respectively. My interim doctor is prescribing me something for the appetite part, with a very spot-on name. Something like “Marijuananol”. Looking forward to that.
Dr. V left Austin Cancer Center, leading to a complicated dance where I have a new doctor there for a minute while Dr. V gets settled at his new place.
So, my after is making progress finally. So, of course, it ends today. I re-start chemo tonight, going to double the dosage but only five days a month. When they told me this, for some reason, I thought it meant once a week. It’ll actually be five consecutive days, with 3 weeks off after. Lather, rinse, repeat for 6 months. Not sure why I thought it would be once a week, or why that even matters.
I had the after MRI Thursday to see how the first round worked, and will find out Wednesday, during my next During. Not sure what to expect or even hope for - I am guessing there will be no dramatic change, good or bad, at this point. So I have just a few more After hours, then I am back to the During. A few pictures from my brief After.
This is from my Thursday MRI, which likely won’t tell me much.
The blue socks in the middle are from the MRI. I promise at the end of this I will donate a crap ton of socks to the homeless. I needed these. They are warm and non-slidey and blue. And came to me in that tiny window when I felt like the After could actually eventually become the Before, but just a few days before the second During, which starts in about an hour. Sigh.
And one bonus picture. Not driving leads to walking (and sporadic bus riding). On a walk to lunch a couple of weeks back, I came across this planter in the strip mall next to Galaxy Theater (near old Highland Mall).
It’s hard to pinpoint what killed this plant. You might think it would be the alcohol, but it seems to have been drinking just a little at a time. Possibly it’s the popcorn, though my money is on the smokes.
I started walking a bit. Then riding a bit. Still early in getting back into riding shape. I pulled out from the MS 150 in early October, but still plan to do the biking part of the 1/2 Iron Man in late October.
I’ve pushed back any thoughts of driving to at least October. I think legally I probably could now (past 3 months since my last recognizable seizure), but I want to be way past my “acid trip month” before I even try.
I did return to mostly normal life, albeit without driving (but with unnecessarily complicated words like “albeit”). I traveled to Dallas last week for work, flying and Lyfting. I started teaching Thursday night.
Side note on my Lyft experience, generally the rides have been great - fast, a minimum of questions, efficient. I do have to say that the last one, with Donovan, from the Austin airport to home, was the outlier. When I was getting in the back, he said “no, you can sit up front.” Um, ok. Up front with the unpleasant music, and the blue strobing light that flashed to the unpleasant music beat. Donovan asked me about my job, talked about the weather, Austin, traffic, road construction, and football, and this was all before we got out of the freaking airport. It did not get any better the rest of the way. On the plus side, Donovan got me home in 15 minutes. I live about 22 miles from the airport. There is no way the drive should have taken only 15 minutes.
One thing that hasn’t gotten better is my appetite and how things taste. Which is bad, and like straw, respectively. My interim doctor is prescribing me something for the appetite part, with a very spot-on name. Something like “Marijuananol”. Looking forward to that.
Dr. V left Austin Cancer Center, leading to a complicated dance where I have a new doctor there for a minute while Dr. V gets settled at his new place.
So, my after is making progress finally. So, of course, it ends today. I re-start chemo tonight, going to double the dosage but only five days a month. When they told me this, for some reason, I thought it meant once a week. It’ll actually be five consecutive days, with 3 weeks off after. Lather, rinse, repeat for 6 months. Not sure why I thought it would be once a week, or why that even matters.
I had the after MRI Thursday to see how the first round worked, and will find out Wednesday, during my next During. Not sure what to expect or even hope for - I am guessing there will be no dramatic change, good or bad, at this point. So I have just a few more After hours, then I am back to the During. A few pictures from my brief After.
Wednesday, August 7, 2019
Need a New Metaphor
I keep talking about when things might turn the corner. I don’t expect things to change dramatically, just want to see some progress. Ok, maybe I was hoping for dramatic improvement quickly. That ship sailed. As did the “at least things won’t get worse” ship. (Trying out a nautical metaphor)
Radiation and chemo ended a week ago. By last Friday, felt like a corner was somewhere nearby. Then the bastard took off on me. Sprinted five miles up river (serpentine route), and hid in a poorly designed hotel. And then buried itself in an LSD trip from the 70’s. Blanket apology to anyone I have talked to from last Friday through yesterday-I have been really out of it. I meant all the nice things I might have said, but none of the rest.
So, every time I talk about that elusive corner, it changes. So perhaps my problem is just finding a better metaphor.
The thing is, corner pieces has always been my metaphor. When my oldest Kaileigh was little, we would do puzzles together. We would start with the corner pieces and try to build from there. It felt like a succinct life philosophy- find the corner pieces and then try to fill in the rest.
My very first “blog” was a series of essays written on MacWord from about 1993 to 1997, chronicling the joys and absurdities of part-time single parenting. I think I have one hard copy somewhere - possibly still with the tear-off printer thingy attached.
My second attempt was my actual blog cornerpieces.blogspot.com. That one spanned the twin period, from 2005 ish till a year or two ago.
This is my third iteration, and certainly not the last. I actually think I’ve found my corner pieces. Jill is one. The twins are one. Family and friends are another. And I can say without a doubt that Kaileigh was the very first one I found. She is an amazing, loving, funny, brilliant, kind person who is finding her place in the world and having amazing adventures. She just spent six months traveling South America solo, and is gearing up for new adventures to come. She returned to Austin this week and came over last night. Though my corner to turn had been elusive, I can see it now. My corner piece brought back my corner. Still may take some time to navigate the turn, but it finally feels like it is possible.
So screw it, I’m keeping the corner metaphor. And for the record, I do believe that there can be more than four corner pieces. My puzzle, if ever completely assembled, may very well be an octagonal cylinder, which would have, well, more than four.
Radiation and chemo ended a week ago. By last Friday, felt like a corner was somewhere nearby. Then the bastard took off on me. Sprinted five miles up river (serpentine route), and hid in a poorly designed hotel. And then buried itself in an LSD trip from the 70’s. Blanket apology to anyone I have talked to from last Friday through yesterday-I have been really out of it. I meant all the nice things I might have said, but none of the rest.
So, every time I talk about that elusive corner, it changes. So perhaps my problem is just finding a better metaphor.
The thing is, corner pieces has always been my metaphor. When my oldest Kaileigh was little, we would do puzzles together. We would start with the corner pieces and try to build from there. It felt like a succinct life philosophy- find the corner pieces and then try to fill in the rest.
My very first “blog” was a series of essays written on MacWord from about 1993 to 1997, chronicling the joys and absurdities of part-time single parenting. I think I have one hard copy somewhere - possibly still with the tear-off printer thingy attached.
My second attempt was my actual blog cornerpieces.blogspot.com. That one spanned the twin period, from 2005 ish till a year or two ago.
This is my third iteration, and certainly not the last. I actually think I’ve found my corner pieces. Jill is one. The twins are one. Family and friends are another. And I can say without a doubt that Kaileigh was the very first one I found. She is an amazing, loving, funny, brilliant, kind person who is finding her place in the world and having amazing adventures. She just spent six months traveling South America solo, and is gearing up for new adventures to come. She returned to Austin this week and came over last night. Though my corner to turn had been elusive, I can see it now. My corner piece brought back my corner. Still may take some time to navigate the turn, but it finally feels like it is possible.
So screw it, I’m keeping the corner metaphor. And for the record, I do believe that there can be more than four corner pieces. My puzzle, if ever completely assembled, may very well be an octagonal cylinder, which would have, well, more than four.
Thursday, August 1, 2019
During, By the Numbers (with pix)
Yesterday I finished (mostly) the "during". Chemo ended Tuesday night, last radiation was Wednesday morning. I have a tapering off of steroids over the next few weeks as I come down from what I can only describe as a two-week long LSD trip (which I am only surmising, with no actual experience. Really) - more on that later. I've cut my pharma buffet in half, but added one new one to address thrush (yes, what babies get. And I could have heard him wrong - might have been colic, or scurvy) caused by the steroids. The lovely feeling of swallowing hard pieces of, something, every time I eat. Adds a bonus dimension to the Kemo diet (Ⓒ pending). Without further ado, "during" by the numbers:
- 43 doses of chemotherapy - 6,880 mg of Temodar. It surprised me that this is equal to only about 1/4 ounce of actual poison. I would have put it closer to 1/2 a metric ton. But the inter-web conversion page disagrees. It's also equal to 0.001083729 stone. Not sure what the hell that means. Remind me, why didn't we convert to metric? And just to go one additional ridiculous step farther, I then tried the inter-web English to Spanish conversion page. Apparently, the Spanish translation of Temodar is Temodar. Sounds better in Spanish.
- 30 doses of radiation from late June to July 31st, for about 10 minutes a day only on days that banks and state government are open. In total, about 5 hours of radiation. Not sure the actual full dose, but think it's measured in Curies. Or Roentgens. Which actually sounds kinda cool.
- 20 pounds - the amount of weight I have lost from my Kemo (Ⓒ pending) diet and my new baby disease. Some amount of the weight loss may also be attributable to:
- 0 - the strands of hair on my head. Can't imagine it weighed that much, but there is none there now. Leading to:
- 1 - the number of years I should wait before actually seeing if the hair will grow back, according to the Radiator. Apparently, my follicles will need a bit of a break and need to take the year to see if they are in it for the long haul or have decided to quit me. To be honest, I will get used to the bald look and embrace it, but it has been a bit more jarring than I had expected. My self image as someone who has hair (albeit receding and graying), changed quickly and dramatically. The person I see in the mirror is not who I recognize. And he is actually currently a little out of sync with me, which is disconcerting. Again, more on that later. And related to this:
- 40 - my estimated dollars of savings in shampoo for the next year. Possibly offset by higher expenses on shaving equipment, head buffing, polish, or whatever else I will need. Brave new world.
- 2 - number of rainbow unicorns who have entered my life. One came with a lovely bouquet of fruit from my friend Pam Spann, and one was waiting for me in Jill's car at the end of the last treatment. Not only is brave Dr. Sparkles, the Rainbow Unicorn, now living in the Smith house, she has a baby Sparkles to take care of. And, by the way, instantly comes in above the cats in level of authority.
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| Dr. Sparkles, the Rainbow Unicorn, seen here with Baby Sparkles |
- 1 - scary-ass mask that I took home, and had no idea what I was going to do with it. Fate intervened, as I left Dr. Sparkles and the mask in Jill's car yesterday when she dropped me at work. One could theorize that the Texas heat might have melted the mask flat, but I know that Dr. Sparkles has something to do with it. Upon closer inspection, I'm less impressed with the precision. I wonder if the masking tape marked with "X" was for guiding the machine that goes "Zap!"
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| Radiation Mask, after righteous attack by Dr. Sparkles |
- One - participation award from the Austin Cancer Center. They didn't play me pomp and circumstance, but I did prevail on them for one last "I Will Survive."
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| My participation award |
- 1,392 well wishes, thoughts, prayers, "you got it", "thinking of you", "how can I help?", and the like. And counting.
- One - Amazing Jill. Enough said.
- Two - homemade Matzoh Ball Soup donations, from Melissa and my Aunt Randy. Plus a ton of food, rides, hats, cards, and other enormously helpful things from so many people. I think I finally have an idea of how to be helpful to someone else who goes through a difficult time. Food, rides, keep in touch, send love, read their blogs, and take their pickles, if offered.
- 10 - times I listened to the song "Radioactive" on my radiation playlist before I realized the only person I was trying to amuse was myself. I then went to a full-on shuffle of my "Cycling" playlist, which includes a few hundred random songs, chosen from various times of my life and generally ones with a good cadence for cycling. I was hoping to find some meaning from the last couple of random songs. You know, something profound from the playlist randomly giving me a message of hope and survival. Gonna have to look elsewhere I fear. Last two songs were "Assholes on Parade" by Timbuk3 and "White Flag" by Dido.
- 2 - weeks of straight-up tripping. The Radiator told me that the visual stuff should begin to go away, but gave a timeline of weeks or months, versus the days scale I was hoping for. For the past two weeks, I have gone through a lot of interesting things. Each of the visual distortions have their own clever name: stop action animation; body and object dysmorphia; movement contrails; mirror dis-synchronicity; "didn't think my handwriting could actually get worse", and "WTF?". Look for more description in a chapter of my coming book "The Kemo Diet and Consciousness Awareness. One Man's Journeys through his Chevy Astro Cytoma Brain Tumor" by Dr. Rainbow Sparkles.
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| New, improved, hairless Russell |
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| One day later. Hair grows so fast |
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