More Bits of Health News

TLDR: better outcomes than expect have been observed with the regimen I am now on when given after failed immunotherapy (my situation); side effects from chemo three days out from the first session have been minimal.

So ... on Wednesday, I had my first round of the new chemo regimen. It's a little intimidating, since he immunotherapy is generally much easier on the patient. It amounts to letting your immune system run a little bit wild.

The downside for me was that the immunotherapy might attack the replacement part I've got (kidney - not OEM, but probably better. Thanks! Brenna). Fortunately, things didn't seem to go too badly on that front. But the immunotherapy just wasn't doing any harm to the melanoma either. It was definitely doing things though as it triggered colitis. After stopping that and bumping the prednizone up a bit, the colitis has been getting better -- just about completely gone so far as the symptoms are concerned now.

Chemotherapy is essentially toxic -- and the hope is that it is more toxic to the melanoma than it is to the rest of me.

The first bit of good news was relayed by my Sanford oncologist, Dr. Sumey, from my oncologist at Mayo, Dr. McWilliams. The regimen I've just started has something like a 25% chance of shrinking the melanoma and a better chance of halting its progress. The news was that, anecdotally, Mayo has seen a significantly better percent of patients show definite improvement on this regimen when it is done after unsuccessful immunotherapy. Every individual is different, but I can't complain at all about hearing that the chemotherapy has been observed to work better!

Second bit of good news: so far, the chemotherapy isn't causing any horrendous problems. The first bullet dodged was an anaphylatic reaction -- a very quickly occurring potentially fatal allergic reaction -- if it had happened, I believe that would have required an immediate halt to the chemotherapy. Continuing in that vein, three days after the infusion, I haven't had any other signs of an allergic reaction or other trying side effects. Yeah!

This doesn't mean I'm out of the woods. Apparently, the effects of this regimen tend to hit the worst at about five days out ("the trough"). The most common problems are fatigue, nausea, and vomiting. No nausea or vomiting at all so far. I've been very tired, and sleepy, but that could be any number of things -- including the anti-anxiety medicine they prescribed as a sleep aid. Apparently, the chemotherapy can make it harder to sleep, just as prednizone can. But -- I'm going to have to look up and add the med name here -- the <medicine> has allowed me to nap and sleep fairly easily and well. Despite a good long night's sleep, I'm waking up a bit like an ent -- rather slowly and feeling a bit wooden. I attribute that to the med. But the sleep itself has been longer and better than any in recent memory. (Apparently a bit of snoring, too, if I fall asleep on my back.) I've been doing a fair bit of napping as well.

It was the first week of classes, and that certainly contributes to exhaustion and my markedly better skill at napping. I'm working with six different co-instructors on six different courses this semester. It's starting out really well, but it is a challenge to communicate a whole philosophy and approach to teaching game design and development to people who have only been peripherally involved in the past. My co-instructors have all been wonderful so far, but I'm trying to lay a really solid groundwork in case side effects or symptoms get worse and I'm less able to.

Nausea and vomiting were the other side effects I was given meds for. Two different ones. So far, no need to take them at all. But my impression (from the dr. the nurses, and the meds subscribed) that vomiting is likely. Hoping to continue with no need for these meds.

One other side effect is increased susceptibility to infection. This is old hat for me. Essentially back to being as careful as I was right after the kidney transplant. It was only a year or so ago that I got the OK to eat sushi again. Now it's off the menu. <sigh> Fortunately, I got a nice dinner at Oshima in Sioux Falls after my last PET scan and before this regimen began.

Another, very likely side effect is hair loss. After doing some research, preemptive measures seemed in order, so I'll be posting a new picture. Gone back to my roots and the haircut I had when I was a four-year-old! (Hair care just got immensely easy!) But I may need advice on hats. I also think the look is a bit more metal, particularly when I'm wearing my Arcana hoodie.

Some (most?) of the side effects from chemotherapy get worse over multiple infusions. So, I'm not expecting such an easy time of it for the long run. But it seems likely that the better things are going at the beginning, the less bad they will be towards the end of the course of therapy (looking at something like 6-8 infusions at three week intervals).


cheers,
skg

Porter's Poem: Through the Blizzard

Porter's Poem: Through the blizzard

Porter had missed a couple recent walks, and his buddy, Caoimhe (Kee-vah), couldn't come play because of the blizzard all day. So despite the weather, he and I went for a short walk. Only about 1/3 of a mile around a block.

This wasn't strictly through the blizzard as it has been winding down for a while. But it was still -4 degree F. with a windchill of -31. And there were a lot of drifts. Many people have managed to clear their walkways, but some were again on the way to drifting over.

Porter enjoyed almost all the walk, but then we hit a spot where a fairly big, wide drift blocked our path. There was no easy way to go around it, so through it was. The drift was about to my knees, so he was sinking to his belly. About half way through, he stopped, and gave me pitiful looks while lifting one back paw high out of the snow and then the other. We weren't that far from being through the drift so I called to him encouragingly and continued. After a moment or two, he came bounding along into the cleared area of sidewalk before us. He was quite proud of himself and went immediately back to his favorite pass-time of following interesting smells about (but not back into a big drift!)

However, while he was stuck, he made up this poem:


Through the Blizzard

Daddy you knows, my toes is cold.
Daddy you knows, I don't want to goes.
Daddy you knows, when the cold wind blows.
Daddy you knows, I don't want to goes.

Daddy you knows, I might give a whimper.
Daddy you knows, I don't want to goes.
Daddy you knows, the drift is high.
Daddy you knows, I don't want to goes.

Daddy you knows, I don't want to goes.
But I did.       
                                               -- Porter


Granted, my telepathic connection with him is far from perfect, so I might have gotten a word or punctuation mark or two wrong. But I think his intent comes through clearly.

cheers,
skg

A bit of good news on the health front

Hi!

For this post to be meaningful, it needs the context of the previous entry Health Notes. So, if you haven't read that, check it out first. Onward!

As part of the fallout from my most recent PET scan, I had a brain MRI on Monday afternoon.

The good news is that, while there were a couple more bright spots (likely metastases) near the top of my spine, there were none (None!) detected in my brain. (And, no, it wasn't because they couldn't find anything at all there. <smile>) The ones near the top of my spine look a lot like the ones we saw on the PET scan lower on my spine. So, they are just more of the same.

Very happy to just have a bit more of what we already knew about rather than some new and potentially even less pleasant spots popping up.

So, Yeah!!

cheers,
skg

Health Notes ...

Ancient background -- my kidneys failed in 2013 and I was lucky enough to get a kidney transplant from one of my amazing daughters who happened to be a match (Brenna). It's been trucking along doing a wonderful job! Fast forward to 2017 -- I found a small patch of melanoma (stage 1) on my back and got it removed, hoping for no more. That seemed promising, but was not to be. In February 2019, we found not only a recurrence of the melanoma, but also a spot of colon cancer. Excised the melanoma in February, had a colon resection in March, then a neck dissection in May. The colon cancer was stage 1 and was cleanly removed. The neck dissection found a couple malignant lymph nodes, but thirty five of thirty seven nodes were clean! So the summer was spent having no known cancer. Rather a good way to spend a summer!

----

Recent background -- for those of you who followed my surgical adventures last spring (or read the ancient background), you know I got to deal with a colon resection for Stage 1 colon cancer and a neck dissection for stage 3 melanoma. The colon cancer seems to have been dealt with. The melanoma decided it wasn't through and a couple spots showed up in early September 2019 (one a little nodule on the surface of my shoulder and another in a lymph node). After biopsies, we ended up going with a form of immunotherapy that has worked well for melanoma, and I've been doing infusions of Pembrolizumab every three weeks since October. I tolerated it fairly well (pumping up your immune system can be tough on your own systems in addition to cancer -- just a bit of colitis though, so not too bad), but the melanoma, unfortunately, has tolerated it as well or even better. Just yesterday, we got the latest scan since September and it it wasn't good.


----

So ... met with oncologist this Wednesday morning to go over the radiologist's report on the latest PET scan. We knew it was not good going in, as the goal is to have fewer, smaller bright spots or at least no more or larger spots on the scan. It was a bust in every respect. The ones that were there are larger, and there was somewhere between several and lots of new spots scattered among spine, liver, spleen, lungs, and so forth. My scan was seasonal at least -- lit up like a christmas tree!



My oncologist did say that my brain was so bright it was like looking into the sun. Unfortunately, he wasn't complimenting my intellect -- he was commenting on my brains ability to suck up glucose and the associated dye!

The immunotherapy is not working and something else will be substituted. There is a cocktail of chemotherapy* that has a 25% chance of shrinking things, and a larger chance of stabilizing them. So that appears to be the next, best option.

We had met with a radiation oncologist on Tuesday and made tentative plans for getting the surface nodule of melanoma on my shoulder zapped, but for now, we're going to leave that alone since it remains an easy way to see whether the chemotherapy is working. If it gets to be more of a nuisance, we will revisit the radiation for it.

The good news re. the end of the pembro (immunotherapy) is that the risk to my kidney goes down. The immune system was definitely boosted as it was causing  colitis, but stopping it should make that go away (along with bumping the prednizone for a couple weeks to help). Then the prednizone should go away, which will remove its complications to blood sugar control and etc.

The new chemotherapy is likely to be a bit tougher on some things -- will just have to see how that shakes out, but it seems likely I'll be wearing hats more and shaving less. (I've always hated shaving!)

If the new chemotherapy regimen works, then wonderful. If not, then the prognosis is measured in months to a year (singular) rather than years. OTOH, my father is still alive after being given two to six months to live more than six years ago. And I'm easily as stubborn as he is.

There aren't a whole lot of options left other than this chemotherapy, as clinical trials tend to prefer subjects without a lot of confounding factors (a transplant is a pretty big confounding factor). But we will be keeping eyes open for clinical trials and other options in case the current plan doesn't work out.

----

I've always been reasonably good at living in the moment and focusing on the things that seem most meaningful and valuable. The kidney failure was a good chance to get better at that. All the recreational activities surrounding the melanoma, colon cancer, tests, surgeries, and other treatments have been especially good, providing even more practice. So while there are aspects of my current circumstances that suck, I've really been enjoying my life, the things I've been doing, and my friends and family. I have been and continue to be incredibly lucky. There are so many things surrounding me that are absolutely amazing. As I get better and better at recognizing them, I find myself filled with wonder and gratitude.

So -- the biggest take away from this is simply a big thank you. To the whole world, to all my many friends (who are all wonderful and amazing -- please keep that in mind if there are ever times you doubt it!), and especially to my family.

===========================


*The new therapy will be a cocktail of Paclitaxel, Carboplatin, Bevacizumab, and Palonosetron. Surprisingly, since I'm getting this info from the insurance approval, they also approved "unclassified drugs" -- sounds rather like the oncologists can throw anything they like into the soup!

Science in Action!

My puppy, Porter, and I take frequent long walks. Recently, we inadvertently performed some empirical tests that conclusively resolved a longstanding debate.

A couple evenings ago, in the midst of our walk, Porter managed to find (to his delight) a frozen squirrel. He was quite pleased with himself and proceeded to carry it for the rest of our walk. On this occasion, we walked roughly one half mile further before arriving home. At that point, I persuaded him to surrender his prize, as neither of us would have been welcome if he had attempted to carry it into the house. But up to that point, he had carried the dead squirrel continuously, for a distance slightly in excess of 2500feet.

By itself, this is an interesting empirical observation, but little more. However, just last night, as Porter and I walked, we passed a substantial sign for Dakota State University. As usual, he paused to check it out thoroughly. After some initial sniffing, he put his paws as high on the sign as he could, stretched his neck out, and snagged something from the top of it. Once more, he was delighted. Some student had helpfully left something edible there! I could tell that it was an entire slice of pizza. We started to continue our walk, with Porter carrying his prize (and presumably waiting for a convenient spot to gobble it up). But no more than twenty-five feet further down the sidewalk, Porter paused, and dropped the pizza slice, ready to continue without a backward glance.

This nearly defies belief. But it was so. As I looked at the forlorn pizza slice lying on the ground, I realized the cause. It had pineapple on it. Now we have the essential data. Porter carried a dead squirrel over 2500feet and had to be persuaded to relinquish it. In contrast, he carried a pineapple-topped pizza slice less than 25feet, without even nibbling the crust or the cheese!

I think we can all acknowledge that our canine friends have vastly superior olfactory powers and they are essential to all but the most basic taste sensations.  The data is  conclusive. The result is inescapable. Pineapple on pizza is at least 100 times worse than a dead squirrel.

I trust this will end debate on the topic.

A story written to go with an image ...

 The facebook group,  The Art of Gaming: graphic artists, writers and developers, posted an image as a writing challenge a few (several?) weeks ago: Write a story for this image.

Per the website at the bottom of the image, this is by Andrey Vasilchenko whose portfolio can be seen at http://andreyportfolio.blogspot.com/.

So, I wrote a story:


At first, she thought the fairy was bringing her a gift, a beautiful golden ring. Only as the fairy brought it closer could she see the detail and as she did, her wonder grew.

Some said the fairies were evil, while others said they were good. Some said they brought gifts to those who found them. But all had said they brought pain. She'd laughed at the thought. What pain could such small, beautiful creatures of light bring? Certainly nothing that worried her, for she had survived years of training and hardship and battles. So on that rare free afternoon when their camp was near the wood, she'd slipped beyond the fortifications and sought them out.

The detail of the ring was hauntingly familiar at first. But then recognition grew as her eyes followed the patterns -- so very like the patterns her Gran had grown in her gardens each year. No regimented rows for her. Plants looped and swirled and intertwined in curious ways. Michelle had delighted in working with her. She remembered many warm spring days lying on the earth, her bare limbs baking in the sun. The sun had felt so good after the hard work of preparing the soil and planting. And even better after long hours of weeding. As a child, she'd struggled to follow the patterns, but Gran had never minded. Gran just adapted, incorporating Michelle's simple mistakes into yet another variation.

The weeding had been tedious. And painful -- Gran would slap her hands away when she was about to pull something that belonged. And Gran would tease and chide her whenever she missed a weed or slacked in her work. But Gran had also taught her. And the sprawling patterns of the many plants intricately arranged made her learn those lessons well: she knew the leaves and stems of every sprout Gran had grown in the garden, as well as all the shapes of every invading weed.

She closed her eyes and could see the rich brown soil, the tender green of the sprouts. She could almost hear her Gran calling her in for water at the end of the day, and feeding her the simple pie that was her favorite. Her mouth watered for the sweet berries and the still-warm crust. Despite the work, she'd grown to love those days and spent most of every afternoon lost in imagination as she'd carefully tended the plants. She'd imagined her own gardens and just how they would be arranged, the patterns and colors that would one day sing out, bursting with love and growth and promise. On those long days, the gardens in her mind would grow ever more intricate and -- .

There was a slight sound that drew her back. A tiny bark of malicious laughter? She shifted. The dent in her pauldron had grown deeper and where it chafed was threatening to blister. The damn pauldron would need work. Sweat mixing with blood from the small cut on her hand stung. She'd need to rewrap the hilt with a bit more padding for a while.

She opened her eyes, and the fairy was still there, and still holding the ring. But something had changed. The patterns no longer seemed warm and brown, but instead cold and gray. She could no longer see golden sun or ripe fruit. Almost frantic, she squinted and concentrated, but now could only find shadows and blood and ruined bodies in the ring. Nothing but a dismal killing field. The garden was gone.

The fairy proffered the ring. It was hers. Now and forever.

She accepted it.

And as she trod slowly back to her regiment, she wept.

An Old Poem from 2AM during the first Global Game Jam

As Global Game Jam 2012 is bearing down on us, Kimberly Voll wrote and posted to her blog a "light-hearted little poem" Twas the Night Before Game Jam ... visit http://zanytomato.tumblr.com.

Mike Reddy posted a link to his Global Game Jam collection http://gamesoc.newport.ac.uk/GGJ/ (lots of stuff on the page - but search for "song" and you can find his various filk efforts.) I remember his Still Awake based on the Still Alive lyrics from the first jam.

These reminded me of the following, which I wrote at about 2AM during the first Global Game Jam. I was the only organizer for our site that year -- it was all brand new and I was going crazy attempting to manage everything. (This year, I've got *lots* of help thanks to colleagues like Jeff Howard, Glenn Berman, Giles Timms and Nate Edwards -- and large numbers of great students.) Sleep deprivation can lead to curious results!


Twas the Night During Game Jam

T'was the night during game jam while all through the labs,

not a creature was typing, no controls, alt, shift, tabs.

The screen-savers were dancing across the dark screens,

Awaiting a key press, for more int’resting scenes.

The designers were laid out, all sprawled on the floor,

With visions of sprites, textures, samples, and gore.

While I with my tablet, settled onto my lap,

Had just nodded off, for an overdue nap.

When what to my wondering eyes should appear,

But the game level fairy, with an offering dear:

Two levels, five monsters and one deadly boss …

complete with new textures, all covered in moss.

I thought for a moment “I’m in over my head”,

But the health meter showed I had nothing to dread.

The fairy was rendered in high-poly glows,

And her sneezes, shot particles out from her nose!

But, after she transferred those assets so sweet,

She sprang to the exit, sure and swift on her feet.

I heard her exclaim as I lost her from sight,

“Happy Game Jam to all, and to all a good night.”

cheers,
skg