My blood is good. Normal human blood. Nothing weird.

Tomorrow I start the new chemo regimen, which is twice the drugs of the last one and I get to wear a pump for 48 hours. Exciting! Guaranteed diarrhea! A multiple day schedule of a cocktail of anti-nausea meds and steroids!

BTW, if you want a sad fact, there are so many cancer patients in SE WI that none of the infusion centers will schedule out further than your next cycle right now. It’s kinda fucked. Cancer is bullshit.

The only other news to report is I have started experiencing neuropathy in my toes. It’s intermittent, but when it happens it feels like someone is jabbing a red-hot knife under my toenails or maybe taking an angle grinder and running it between my toes. If you’re around me and I yelp for no discernible reason, that’s why. Luckily it’s not constant right now so I mostly just go about my business with a certain level of trepidation that I am going to be walking on sunshine any second.

WhoooooOOOOAAAaaa. It don’t feel good.

Reason number 56239672 to be a pleasant and funny patient. I have my next two chemo cycles scheduled now, at the main hospital and not out in the boonies.

I have not posted anything for a few days because nothing much is going on. I am on an off week before I change over to the new chemo, and the last couple days have just been nausea and heartburn as expected.

Today I feel like a regular human except I was real dumb and ate some pizza last night and my digestive system enjoyed that quite a bit less than my brain did. Humans need to have some joy in life though, so sometimes you gotta help win trivia and eat some pizza.

Labor Day really jacks up scheduling, because people get vacations but cancer doesn’t so next week I will be dragging all over SE WI getting poked and infused and pumped and prodded and I will get to feel like shit again and I can write all about the adventure that is my declining physical state. A NOTE: THIS DECLINE IS PURPOSEFUL. I HAVE TO DIVE TO SHAKE OFF THE LUMPS. THIS IS ALL AIMED AT SURGERY AND RECOVERY ALWAYS.

I have some other stuff I want to scribble out before that, but it’s a longer thing I am actually putting some work into instead of just typing off the top of my head. So that’s later too.

Anyway, how’s your Thursday? Do you know hundreds of the coolest people on Earth? If you don’t, I can introduce you to them. Everyone reading this, meet someone that hasn’t made friends with you yet. Let’s party. Calmly.

It was hella Monday today. Garfield style.

I had a bad night. Lots of angst and discomfort and couldn’t sleep and then the nausea kicked in about 4am. I tried to fix it with ginger candy and a late night oatmeal bar but finally had to admit that it was not just a little stress, but serious nausea on the horizon and took a compazine at about 5:30. Ellie is an excellent middle-of-the-night-whats-that-noise-are-you-ok caretaker and helped me out.

The capecitabine side-effects timing seem to be a little like the opposite of the oxaliplatin. I got all the OX effects last week, then felt better for a few days, and now as I near the end of this cycle (only 4 pills left in about 4 hours!) I am getting hit with the CAP effects as it builds up. It’s mostly nausea and heartburn.

I get a week off starting tomorrow to let my blood counts build back up to a level it’s safe to give me more drugs, and I am looking forward to it.

I am also looking forward to moving to a new regimen at a new hospital. I met with my new oncologist at Froedtert and she was great. Super realistic, but also ready to be aggressive and help me have the best chance to tilt the odds in my favor. Other pros: She’s a woman, which I have to say, I am gonna try and stay away from male doctors from now on. I am saying that as a white male. I can’t imagine what healthcare is like for everyone not living in cheat mode like I am lucky enough to experience. She’s also left-handed. Don’t ask me why that is comforting, it just is.

She agreed it was good that I started chemo as early as possible, but wants to switch me to a new regimen referred to as FOLFIRINOX. It’s three drugs (and a chaser) instead of two. It’s two week cycles instead of three. I have longer infusion appointments, and get to wear a pump on a fanny pack that connects to my port for 48 hours every couple weeks, but I don’t have to take pills or keep any toxic medicine in my home anymore. Side effects are basically the same in terms of what to expect, though some may be more intense (nausea, diarrhea). I am referred to as “young and fit” for the first time in decades, so I expect it will be a bad time but I can get through it.

They’ll monitor me and give me stuff to boost white blood cells and change dosages as needed, but don’t expect to see me at any events much, especially as the temperatures drop below 75 degrees. The cold sensitivity is no joke. Neither is COVID. Don’t take it personal if I start standing way back or don’t invite folks in. It would be just my luck to respond well to chemo and die of a respiratory disease or some stupid infection, so like, nuh-uh.

The plan is to do chemo cycles until mid-November when I will have another round of imaging to see how the millions of little fuckers inside me are responding. If I am very lucky they stopped spreading, but didn’t completely disappear, so some very confident surgeons can go in with robot melon-ballers and tiny power washers full of acid and clear out my liver, while I lose most of my sigmoid colon at the same time. If not, then 3 more months and look again. Meanwhile I am going to be the best patient that ever stuck their tongue out and said “aaaaah.” and try and give myself the best chance to win this golden ticket.

In good news, I finally found something I am good at. According to the oncologist “You’re really good at tolerating chemo!” and while it’s only been a single cycle, I hope that’s true and I maintain the sorta basic functionality of life I have been so far while this shit sucks the health out of me.

This update wasn’t very fun or funny. I am a sleepy boy. I am however in a mood to share, so if anyone reading this has any questions, shoot! I mean not just about cancer. I can do trivia too.

Day 31. The most tired. All the way tired.

I got to see my parents today which was super fun and hilarious as always.

The steri strips finally came off the port sites and the one that got a little squirrelly is only gonna leave a little scar. That upper spot for guiding the catheter sits right under where the seam of the neck hole of all my cheap shitty gildan t-shirts fucked with it. Oh well.

That is all I have to share. Next big Oncology visit is Monday and maybe there will be something exciting. Or else I will start telling stories. We’ll see.

Happy Saturday! Good night!

Day 10 of chemo. I don’t have a lot to report today. I slept like shit, and when I was asleep I dreamed of pulling my own guts out. Gave up on unconsciousness at 4am. Easier to be tired.

I am very tired. That’s the main thing today. So so tired. 

The only notable thing I can think of that happened today is I drank something cold and it did not feel like thousands of microscopic ice skaters pulling cheese graters behind them racing down my throat. So, that’s good. I have a few more days before that side-effect starts up again I think.

Other than that I did my silly little job and took some silly little walks and listened to Ellie sing and ramble around the house in-between. A basic time of Friday.

Thank you to all my friends. Again. Always. People keep sending me stuff to help with various haywire parts of me, and dropping off food, and sending me jokes and stories and doing all the things that remind me that I am going to run myself ragged being the best friend I can be when I get out of this mess. It’s going to be so fun.

Happy Friday!

Last November/December I started noticing a lot of digestive problems: cramping, fresh blood streaks in my more solid turds, random diarrhea but only small amounts, gas like I just got fracked, etc. I figured at the time it was lactose intolerance coming for me, or gluten issues, or IBS maybe. I have abused my organs quite a bit over the years (“Hey Matt, I dare you to eat that half a hamburger laying in the gutter” “Hey Matt, eat this worm from under the garbage cans” “Hey Matt, bottle of Tullamore Dew?”) and I assumed I had just worn something out and had to eat differently. I cut my diet drastically and made an appointment with Dr. Walkitoff.

He listened to the symptoms, snapped on a rubber glove and made my morning interesting, and proclaimed he thought it was as combination of diet and hemorrhoids but that I should get a colonoscopy. My health insurance company promptly went out of business making that process more complicated than it needed to be. It took a few months to get the appointment made, and in the meantime my intestines got back to regular business, lessening the urgency, as it were. When I finally got the appointment made it wasn’t until late July. Oof. But I wasn’t worried.

Spring sprang and I was my regular self, leaving my offerings every morning without any issue or weirdness. Then in April I started having pretty serious cramping and gas again while in the Southwest. I am a combination hypochondriac/nothing bad can happen type person, so I tried to ignore and eat less like I was on a road trip. Apple-a-day shit and all. Meanwhile when we got back I worked on trying to move the colonoscopy date up to no avail. 

In May into June, everything got real fucky. I would wake up in the morning with what I came to describe as “the stabs” with super sharp pains in my lower abdomen and a feeling like I was going to shit the bed. I would hobble to the toilet and have to strain and strain. Have you ever simultaneously felt like you had the worst diarrhea and also were constipated? Such an odd feeling. Anyway (eventually this went from sometimes to every morning) this happened: after some struggle out comes 3-4 tiny hard rabbit turds and a copious amount of blood and mucus. This would be followed later in the day by a normal amount (by volume) of poop of a less-than-ideal consistency. Not a turd, not diarrhea. Also blood but not like that morning problem. I called my doctor’s office again. He retired without warning. 

At this point I became alarmed. The pain was bad enough I was starting to think I had a hernia. I got an appointment with the first new PCP I could find that was accepting patients. He poked me and prodded me a bit and said it was not a hernia, but that the colonoscopy coming up would figure it out. Boy howdy did it.

Meanwhile for months now I have been waking up in pain, running to toilets, firing out blood and pebbles. Sometimes multiple times per day, in between the normal drops. Colonoscopy prep was a reprieve! I loved it! Spa day! Fully predictable and painless shitting! Fuck yes!

Yadda yadda they found an ass goblin gotta get a scan blah blah blah metastasis to liver fear loathing pooping blood and getting stabbed from the inside out over and over everything sucks here comes chemo.

Chemo warnings focus a lot on diarrhea. I was expecting diarrhea. I didn’t really get diarrhea. I got what I described above, but instead of once or twice per day, it was 6-7 times per day. Every few hours, while exhausted and out-of-it, I was getting intense pain and had to run to the bathroom to do basically nothing but pop a nosebleed out of my ass and the most pathetic little dook you can think of. Like, a chihuahua turd in a parfait of blood and bile. Made me so mad. On day 3 I did start to get some diarrhea and loperamide knocked that right down. I was resigned to just never having a normal restroom experience again though. Smoothies would help, but it was still not a good experience whenever I went in the bathroom.

Jump ahead a few days to yesterday morning. I woke up feeling more or less normal and felt no pain or urgency or really anything one way or the other. I did have to piss though, because I drink 20oz of water roughly every 2 hours, I also gotta pee a lot at roughly the same frequency 24/7. I get in there, sit down, because I am working on becoming a gentleman and also my urine is toxic and I am trying to minimize and splashing, and oh, ok, it’s poop time! I swear to god it was the first non-weird bowel movement I have had since the equinox! I almost took a picture I was so proud! It was the first good thing that happened to me on a toilet in a very very long time. I was happy for a moment, and then there was mouth sores and other things to remind me to not get cocky.

Well friends, let me tell you, this morning not only did my organs somehow repeat the performance, but this digestive system of mine surpassed itself. I dropped a deuce the size of a ren-faire turkey leg. No pain. No blood. As perfect a turd as has ever been flushed. This thing deserved a birth certificate. I have no idea WTF is going on in there, and I am not deluding myself that this will be a trend during treatment, but I am just so flabbergasted I felt the need to share. You’re welcome.

I also wrote all this so that if anyone reading it experiences anything similar, or just general doodoo weirdness, they can maybe take a lesson to try and get in to ask a medical professional about it ASAP instead of lollygagging around like I did.

You might call this poop a Cautionary Tail.

Happy Thursday!

It’s been 27 days since this started, and I am 7 days into the first round of chemo. Yesterday was a pretty OK day, and I spent it acting as normal as I know how. Today has been pretty OK as well. I think I am having the common experience of early chemo not being as rough as it gets later on, and the Oxaliplatin being rougher on me than the pills. I don’t feel 100% exactly, but I am functional and can do stuff. I mostly stay isolated, but you might see me walking around within a few blocks of my house. 

Mentally and emotionally I feel good.

I’m still working, so a lot of my weekdays are spent doing work stuff, which you’d think would be the last thing I would want in this situation but it’s a good distraction and I love my colleagues more than probably makes sense if you’re not in my exact situation. It’s something I kinda look forward to. I mean, there are meetings, and then there are meetings, if you know what I am saying, but overall it’s been good for me to solve problems I can solve, while facing The Problem I can’t solve on my own.

The Problem being so huge and everchanging is one of the worst parts of it. No way to get a grip on it by myself, and so I accept that I do my part with nutrition and rest and finding the right tools, while I also recruiting the best team I can to help me. Medical professionals, but also all my friends. I am filled to the brim with courage because of you. I find joy in the mundane. I get to laugh with Ellie every single day. When I am annoyed or angry or scared it has been fairly easy to accept the experience and move through it so far. I don’t know that I would be capable of that without the massive support I keep receiving from everyone. The food and little (and big, to me) presents and messages and words of encouragement are out of this world. I would like to ask that folks email me their mailing address to ttamaton <a space here as though that will fool bots remove> @gmail.com if they’re comfortable doing so, so I can get back on my pen-pal bullshit.

I guess that’s it for now. I am going to go drink ounces 41-61 of water so far today and eat some fruit. It’s a real wild lifestyle.

Happy Tuesday!

Current emotional status, Day 26 since the words “Matt” and “cancer” were joined in a sentence over the phone to me, at work. Me leaning over a metal book-truck and writing “cancer” on a piece of scratch paper with a golf pencil.

Imagine one of your most intense fever dreams. Stretch it out for 26 days and make it so no amount of hydration or food or rest makes you feel normal. 

Now imagine going through this with the sunshine of your life, so that no matter how scary things get, you’re still laughing and making plans, angling for the days and weeks and years when the sentence reads “Matt” and “cancer free.”

Anyone who knows present-day Matt knows that he puts his everything into the people, projects, and ideas that matter most to him. What this means for our current predicament is that he is allowing himself to rest and learning to ask for and accept help; he is taking walks in defiance of the near-constant fatigue; he is drinking SO MUCH water; he is eating even when it feels like a chore (though thankfully it doesn’t always feel like a chore), getting fruits and veggies and plenty of protein; he is educating himself, like always; and he is writing every day—one notebook for journaling and another to track meals, symptoms, side effects. Pardon the gush, I’m just so proud of him. 

JFC it’s only been 4 days. Time is an illusion, but in the wrong direction.

I feel better than yesterday, but I can definitely tell that the drugs are fucking with my cells now, and I am not looking forward to how these feelings are going to progress when I get to the “real” parts of these cycles in the coming weeks. Still a lot to learn about timing various remedies to match side effects, and how to manage changes that are inevitable. Tap dancing on quicksand is not fun, but it is interesting. I know I have a long brutal experience in front of me, so all I can do is my best.

I am doing my best to remain positive and find little bits of joy everyday. I don’t think I knew what it meant to be present in the moment until now. 

To the folks that have lobbed stuff over the fence, or dropped off coffee drinks, or just said nice things to me, I truly believe you are super heroes and I can never get enough and I will never give enough back. I won’t stop saying it either. I love you.

Happy Friday!

Today started at 2:30AM with nausea, and has ended with diarrhea. In between, spreadsheets.

That sounds pretty bad, but it’s not too different from a normal Thursday for me, so I’ll take it. More of the very pinnacle of humanity have given me gifts of food and help and support and words of encouragement and I repeat myself but I never understood how important that stuff is before now. Every single time someone says they’re thinking of me, or have hope, or just talk to me about whatever, it helps me beyond what I imagined it would. So, thank you again, all of you.

I know it’s just the very start of this, and it may be hard to maintain the tempo as the new normal me turns a little more Gollum, but I am so grateful for everything and I am going to keep telling you all over and over and over.

Happy Thursday!

Good morning!

Although Matt slept only four hours last night (he had a three-hour nap yesterday evening), he assures me he wasn’t up all night feeling sick and/or worrying. Instead he says his brain was just like [cue singsong voice], “doop-de-doo!” This is mildly concerning to me, only because his brain is usually like [cue nerdsong voice], “beep-boop-beep: space-time continuum, bicycle science, quantum computers, history of the holy roman empire, embroidery-machine process improvement, abolitionism from civil war to present…”, but under the circumstances it’s probably a healthy use of his brainwaves, especially when sleep is elusive.

He woke up with the usual energy and smile and is now 1. eating breakfast ahead of taking the day’s first handful of pills, 2. making me coffee, and 3. planning his morning walk to Daily Bird.

We don’t expect every day ahead to be quite so carefree—the pre-infusion antinausea meds should start wearing off later today and into tomorrow, for one thing—but I am taking this morning as an indication of Matt’s physical and mental readiness to fight (and, in time, defeat) this disease.

We intend to approach the present challenge (ah, cancer euphemisms) with confidence and always, always humility; with humor and openness; with positivity and love. We are so very thankful for the support of our friends, families, and community…and for all the forms this support is taking.

I’m off to work; I’ll let Matt fill you in on the oddball side effects of his first chemo infusion yesterday

. 

As a wise frog once said, It is Wednesday, my dudes. As a wise Matt will likely soon say, Happy Wednesday. 

Chemo is weird and scary and it really helps to have a partner that you are open with to keep your head on straight. Ellie keeps me facing forward always.

Yesterday was easier than I feared, and it made me a little cocky at some points. Confidence is important but I also have to approach this with humility and realistic expectations. I hope to be able to maintain the thoughtful and observant approach I have been striving for as my health declines due to the way these drugs work. I have my eye on the goal of getting out the other side always, and I am doing my best to be patient (in all 5 adjective and both noun definitions of the word). I just have to temper myself a little bit when the worst-case does not immediately occur, because times are going to get bad and if I don’t stick to one day at a time, those bad times will hit me so much harder than they should otherwise.

I am super early in the very first cycle so a lot of the pre-load IV drugs are still in my system fighting off some of the side-effects of the gnarly chemo, and right now the primary side-effect I have is any temperature that’s cooler than about 80 degrees gives me an odd sensation of pins and needles scaling up to unbearable burning depending on the temperature and duration of exposure. Room temperature drinks are like swallowing an inside-out pin cushion. Accidentally washing my hands in cold water is like putting my hand in the box from Dune. A cold breeze makes my entire face feel like I was just at a major dental visit. The only other thing so far is whenever I eat anything my saliva glands cramp up, squirting roughly a gallon of their output into my mouth. Think the feeling you get sucking on a lemon, but multiplied to a point where it feels like a martial artist just put you in a pain submission hold. It doesn’t matter how bland or tasty the food is, that first bite has me grunting and holding the sides of my jaw until it passes.

There will be worse to come. I am hydrating like mad, and eating well (SO WELL THANK YOU TO PEOPLE THAT HAVE BROUGHT FOOD), and taking walks and getting exercise. I have so many calendar entries to remind me to do all these things on a regular basis. It will help me when the diarrhea/constipation/nausea/mouth sores etc etc etc come as they likely will. I am doing my best to prepare knowing I will probably never be ready enough.

That covers what I am feeling. Regular me with some oddities. Here’s how I am doing:

I only slept about 4 hours last night. No stress or anything, brain was just like “no thank you” to sleep. Side effect? Maybe. Reaction to major life event? Probably. Anyway I was calm and happy laying there all night except at one point where I rolled over funny and did something that felt like I accidentally tried to tear the stitches out of my port site. Nothing wrong with it, just got careless with my night time thrashing. Woke up for morning dose and made breakfast and got coffee ready for Ellie and tried really hard not to kiss her because I am exuding poison in all my body fluids now and need to protect her. Got my Daily Bird. Got paranoid about COVID. Took a little walk. Now I am working and waiting.

I will be waiting whenever I am not doing. I will be doing whenever I am not waiting. This is all it will be each day until the next day.

I have already received so much help and love from so many people and so many of you have asked what you can do and I will do my best to reach out whenever I can as our needs change. Right now I just feel like Matt, but tingly. In two weeks I might feel like a zombie and ask a lot more. You are all the very best and I am keeping track and you better believe when I get out the other end of this I am going to become SO OBNOXIOUS paying you all back.

Happy Wednesday!

This morning I start genetic counseling to see how scary this is to my littermates and other relations. I hope to get a call this afternoon after the Tumor Board meets with an idea which of the many complicated treatment routes my team thinks will give me the best path through these dark times. Chemo starts tomorrow morning.

The past few weeks have been the fastest slowest days I can remember. Puts the time dilation of early COVID times to shame. I am looking forward to taking actual steps to evict the rotten parts of me, even though it’s going to suck and later I will be cursing myself for wanting to get going on poison and cutting and poking and spraying of acids and chemicals.

Tomorrow is tomorrow. 

Happy Monday

EDIT: Morning conference concurs that I start chemo, they will modify the therapy when I change hospitals. More scans in 3 months to assess timing of surgery. Basically what I refer to in my head as “sick around and wait” though that’s not really a fair way to put it. Awaaaaaay we go.

A recap of the past two weeks and the current state of my guts as far as we can tell:

I went for a colonoscopy two weeks ago thinking that the doctor would see some polyps and maybe tell me I have IBS or something that would explain the digestive issues I was experiencing this spring. Instead I came out of sedation to learn there’s a 3-4cm mass in my sigmoid colon and a CT scan was already scheduled for the next day.

That CT scan was a real bummer to say the least. In addition to the little goblin camped out in my colon, my liver looks like a dalmation puppy. Spots all over.

The next 10 days have been filled with more scans and tests and consults with surgeons and oncologists and second opinions. It’s quite bracing to be unexpectedly thrown into a fight for your life, but I am surrounded by hundreds of amazing people who are loving the hell out of me and I cannot describe how energizing that is.

Today I had a little spa day where I got a liver biopsy and a port-cath installed at the same time in preparation for chemotherapy to start next week. It’s the first physical step in this process that has slowed me down a tiny bit. I am preparing myself to meet more challenges very soon, and to be thoughtful and focused on the goal of beating this disease, and I am learning to accept help.

The plan at the moment is chemo to beat up the lesions on my liver, and then see if some very smart people can cut the rotten bits out of me. It’s going to be a really rocky autumn/winter. I am so lucky to have Ellie and my family and all my friends supporting me and I fully intend to form a series of deeply positive grudges that will become evident when I get on the other side of this and start returning this love.

People who love me set this site up so folks can help. We don’t even really know what we need yet, because it’s all so new and moving fast, but things will start popping up in short order. If nothing else I will keep updates coming for those who are interested. 

Happy Wednesday.