Got home from the clinic late last night after multiple pokes and scans and waiting and waiting and waiting to finally be told “Sometimes cancer just makes your body weird.” That is not a complaint. It’s true. It really does.

I am glad the Oncology folks were concerned enough to refer me to get checked out and I feel so lucky it’s just that I will occasionally have a fat neck sometimes, and maybe I should take it easy riding my bike and try not to sleep on my side so the shoulder on my port side (actually starboard) doesn’t get messed up. I am immensely grateful to the staff at Froedtert’s 24 hour cancer clinic. One of them remembered me from past visits way back in October as the guy that won’t put his shirt back on and won’t wear a gown. This, of course, led to nothing but triggering me to be at my most corny and hammy self throughout the visit. I did keep all my clothes on this time.

Highlights from 5.5 hours at the clinic:

-During an attempt to put an IV in at my wrist because the veins at my elbows are more or less destroyed from months of pokes: “No one else can use this spot. You can only let us use this spot.” (IV failed) “OK other places can use that spot.”

-Me rolling my arms around to show off veins in my upper arms that the nurses in the clinic are apparently not allowed to touch. “I am only allowed to poke you from here *points at elbow* to here *points at hand*” I was doing the show-offs to them as they stood in the hallway talking about me. I don’t think they realized I could see/hear them out there conferring about how to handle my need for multiple simultaneous IV lines to get the scans that were ordered. I got a good laugh making muscles and pointing at my forbidden bicep.

-My veins are *so* fucked they called in the IV Team! The Elite Pokers! Someone rolled in with a mobile ultrasound machine and greased up my arm and found a vein deep down in my forearm with it, and then the most amazing part: I GOT TO WATCH LIVE ON ULTRASOUND WHILE THEY INSERTED A NEEDLE! It was maybe the most sci-fi thing I have personally witnessed happening to me. I am sure other cool stuff has happened but I was mostly unconscious or not allowed to see the images at those moments.

-The transporter that showed up to take me for CT scans of my heart/lungs/fat neck took a look at me and said “want to walk?” and without even thinking about it I agreed. It was a long walk, partly because he took me to the wrong imaging area first. Every single person we saw looked at us like we were space aliens because I was not in a wheelchair or a bed. I got asked multiple times if I was OK to walk (not by the transporter, but by other folks as we passed by or stopped places). He also got yelled at because he took me in to the CT scan area through a shortcut via the employee-only part of the lab. I don’t think that guy is going to get a good employee review, but I was appreciative for the opportunity to not sit still for a little bit.

-The nurse that remembered me heard the story of my deep love of graham crackers after my colonoscopy last year, and brought us graham crackers!

-The NP that pushed the Big Red Button that turns the lights down, while Ellie and I exclaimed that we did not want to push the Big Red Button to turn the lights down even though I suspected the Big Red Button was actually a light switch, and as she did so said “I didn’t push any Big Red Buttons! No one saw a thing!”

-Ellie creating a playlist for the ride home that, as far as I can tell, was just a search for the word Thunder in any song title.

Speaking of Ellie. She came home early in a thunderstorm to escort me to the clinic and make sure I was full of oats and jokes and stayed hydrated throughout this latest wacky adventure. I know I caused her some anxiety with all this, and I am very fortunate to have someone in my life that willingly puts up with all the unexpected madness that occurs as my body adjusts to a new operational status. It can’t be easy, but I haven’t been put in an old grocery bag and posted on a Buy Nothing page for porch pickup yet, and for that I am eternally grateful.

It is Wednesday my dudes. Go outside and dig in some dirt.

Words of the day are: “supraclavicular lymphadenopathy”

I look like someone shoved a couple water balloons under the skin on each side of my neck. There’s dozens of possible causes for this if you search the internet. My favorite is: “cancer.”

This happened before back in early October, maybe it was late September, the memory is hazy. I got scanned and poked and people puzzled over me and then I was told to come back again if anything addtional started to swell up or I got a fever or other new symptoms.

Anyway the nice folks in oncology are getting an appointment set up for me to go in to the 24 hour cancer clinic for the third time in a year. I am already excited to be asked to put my clothes back on.

The fun never ends.

I have NO IDEA what is going on inside me until July, which is super wild to me but I am getting used to it.

I am writing here to share that I am excited to be taking part in a Patient Experience Interview to help shiny brand new med students learn how to talk to cancer patients and to share what it’s like to go through treatment. A very smart doctor is trying to get the incoming future doctors to have their heads screwed on straight when they are walking into conversations with people that are mostly scared out of their minds and probably confused and angry. I get to have a recorded session tomorrow morning and then next month I am understudy in case the primary person they are throwing on stage can’t make it for any reason.

I really enjoy talking about what it’s like to be attacked by your own body and how treatment affected me and why I think I am still here and what I want to do with whatever time I have left. I like to blather on and on about my attempts to be the Most Patient Patient.

I like to try and explain how this disease has more or less burned out my ability to worry. I like to share how the best medical professionals did their best, and what the ones that were not so good could have done differently. I like to tell stories.

This is going to be fun.

Today I had second consult about The Thing on my kidney as well as a follow-up with the best colo-rectal surgeon on the planet and both went exceedingly well, as far as these things go.

Urologists that deal with cancer are way more chill than the other cancer docs, and the general sentiment remains that The Thing is stable, and my kidneys are working fine, so come back after the next scan in July and we’ll see if anything changes. If there are any changes of concern and The Thing gets froggy, they may go in with a looooooong long needle and ablate The Thing and I can avoid more cutting and scars and stuff. I would like that. I would especially like it if that is not necessary and I can have a summer riding bikes and drinking coffee and visiting my friends. Basically like I was when I was a kid, just swap out the root beer for bean juice.

The World’s Greatest Colo-Rectal Surgeon rolled in with all good news and reminded me of how scared I was the first time we met when I was convinced my days were numbered and I would be lucky to see 2024. I was told everything looks great, my scar is cool, my digestive system is totally normal for someone at this point in time after surgery, and I should ride my bike, schedule a colonocopy for October, and hopefully never see her again.

TLDR; a second prescription to “live my life and have fun,” with supplement of “ride bikes.”

I don’t know how I got so lucky. I am not going to let it go to waste.

See you outside sometime soon!

As much as I enjoy writing about my poop tubes and blood filtering organs it seems tentatively likely that these updates will become substantially less frequent. That is good.

This morning I had my first surveillance labwork and clinic visit. The lab was packed wall to wall with patients. I have never seen it so busy. I hope it’s only due to understaffing and not some new explosion of cancer cases. The lab techs were all in really good moods and I did not help the back-up by being a willing participant in shenanigans, including several folks coming into the cubby I was in to listen to me explain all my silly tattoos. Got my port poked, sucked, and flushed while cracking jokes and explaining why I have so many tattoos that say some variation of “RW24” (No, it is not a gang. Look at me. It’s definintely not a gang. etc) and talking about manatees and socks and having a low bar for permanent changes to my body.

Clinic visit was fun as always. Scan: clean. My liver still looks beat up but no new lesions. My lung still has “freckles” but none of them have changed and they are almost certainly non-cancerous. My guts are normal, just short and full of staples. Blood work came back messy but not unusual. I got to show off the trophy my brother made, to great acclaim, and explain that the cardiac stuff a few weeks ago was very different than the cardiac stuff 10 years ago. Some chuckles at my chart from that time stating my main symptoms as “dizziness and giddiness” when I said “I don’t know why they put giddiness, that’s just my normal state of being” and also told the story of the ER doctor from back then that accidentally lifted my gown a little too far to show my Special Purpose and then turned to my partner at the time and said “Sorry.”

My prescription is to “life your life and have fun and come back in 3 months unless you turn yellow or have symptoms” and that’s what I am going to do. If you’re going to see The Mountain Goats tonight at Turner Hall, I may see you there.

On Monday I meet a new doc about the lesion on my kidney, which is a different beast but not as scary as the past 8.5 months have been. What’re they gonna do? Cut me open? Pffft. Come at me doc.

I may be getting a little too used to the “Finding Out” phase of FAFO.

Anyway, Happy Wednesday my dudes!

It’s been a week since my last chemo appointment and I feel OK overall, though still a bit foggy now and then and sometimes for fun my heart rate shoots up to like 130 and stays there even though all I am doing is demonic spreadsheet incantations for work. It always goes back to normal with some water and a walk, so I am not worried about it.

I am not worried about anything. At least once per day, usually as I wake up, I think about the fact that without all the work and support a lot of people put into me I would probably not be here by now. It’s hard to worry when your whole life is bonus time.

I had some good text conversations with cool friends living stupendous lives today. I read some Don Quixote. I told some stories that made people laugh. I completely misused and abused an official HR document. I shaved my head. I tickled Ellie. I am in the midst of folding dough for bread I am going to bake in the morning. It’s been a pretty good day. I am hopeful the streak will continue.

I have finally started writing the letters I promised way back in September. I have no excuse for why it took me so long to move on these. If you sent me your address way back last summer, you’ll see something soon. It can be a penpal thing, or it can just be some rambling note you get from me that you never have to respond to. There is no expectation. Fair warning, my handwriting has gotten even worse with the nerves in my fingers being up against the ropes. Not much I can do about that but be patient.

That’s me. A patient patient.

How are you?

Tomorrow morning I get hooked up for the last chemo cycle of this round, and after the pump comes off on Saturday morning we officially enter Surveillance! My CEA markers are still very slightly elevated, but the ctDNA test came back 0, all the rest of my numbers are good, and my last scan was clean, so I am starting the next phase of this adventure in about as good a shape as I can imagine.

The clinic this morning was more emotional than I expected, even though it’s not even close to the last time I will be seeing them. Just hearing good news from an Oncologist is such a treat, and followed with “Are you excited for your last chemo?” got me a little choked up. I think Ellie felt it too, but I would not deign to speak for her. It was a really good Wednesday morning. I don’t know that I would still be here if it wasn’t for the astounding talent and care of the folks I have been working with at Froedtert. I say that very seriously. I credit them all as lifesavers in a way I don’t think I have ever thought about another human being before.

My next scan is on April 3, and after that I’ll be getting peeked at every 3 months, with a visit to flush my port in-between each visit. If I am extremely lucky and beat all the odds, that means I will be visiting the hospital every 6 weeks or so instead of multiple times per month. I have to be very very lucky.

I am facing the future clear-eyed about what it means to be a metastatic cancer patient. This is only the end of the beginning, but I am still here and stronger than I expected to be at this point and only getting stronger. Except the smells. I am ready to be less smelly. If more spots pop up, we’ll deal with them the same way we deal with every problem. Fart jokes, willpower, and pure stubbornness. Also poisonous chemicals and radioactive substances.

I can’t ever thank everyone enough for all the laughter and care and kind thoughts and meals (oh my god the food! You all need to share recipes with me, I am dying to recreate the food bestowed upon us) and gifts and tools and stickers and comfort and support you provided non-stop for the past 7 and a half months. I am absurdly fortunate in so many ways. All I can do is surf along on waves of love and kindness.

I will see as many of you as I can face-to-face as soon as my face is safe to stick into public spaces. If there is ANYthing I can do with whatever my skillset is (owning a truck, math homework, talking about poop, making vinyl decals and amateur embroidery, coffee delivery, etc) all you need to do is shine the Matt Signal and I will be there.

RW24 cultists like to say “Everyday is a bonus checkpoint” as a shorthand for so much goodness and as a reminder to pay attention to the moment. I intend to win at life purely on bonus points from here on out.

This morning I woke up to a test result notification in MyChart and figured out how to trick the system into sending me more info than “see scanned result.”

Now I know that the blood test they ran to check for loose cancer DNA in my bloodstream returned no indication that my tumors left any little buddies behind when they were cut out. I am not officially NED but it’s still really good news and makes some of my other marker numbers much less scary. My blood is weird, but I am alive and apparently going to stay that way for a bit longer.

A long ways to go yet, and nothing is guaranteed. It’s just nice to see what could have been terrifying information turn into a zero that makes people smile.

I haven’t posted anything here in a bit because as I near the end of chemo things have gotten more routine and telling the same stories about side-effects and poop is sort of boring.

I just finished my penultimate treatment, and only have one more cycle to go in a couple weeks before I switch to surveillance and hope I don’t have to go back under the knife/laser/gamma rays.

The routineness of chemo as you get further along is sort of weird in itself. I am always on a knife-edge of wondering if I am going to pop another surprise neutropenic fever that puts me in the hospital again or if something else is going to go wrong, but at the same time I am more and more numb to being numb and the weeks of feeling like absolute hell. This has been the hardest time of my life so far, but human beings can get used to almost anything and I am so incredibly lucky to have shelter and safe food and water and healthcare and the only thing that is actively trying to kill me is my own body.

The neuropathy has gotten bad enough that we quit the Oxaliplatin for these last two cycles. My feet are on fire a lot of the time when they’re not just two lumps of dead meat on the end of my legs. My hands are getting worse and worse, and considering that once you get past 75% of the treatments there’s not a statistically significant change in survival rates, and if I am lucky enough to live another 20 years to fight in the water wars I need to be able to use all my digits, it was a safe bet to knock it off and get some recovery of feeling before things are permanently offline. It takes me about 4x longer to type up a post like this than it did in the beginning.

Because of the changes in chemo we made over the course of treatment, dosages, drugs, etc, I think from a physical standpoint I have had an opposite experience than a lot of folks with CRC. Physically, chemo has gotten easier for me as I near the end. Instead of the 8-hour long endurance infusion days where I lost the ability to speak or control my limbs and felt like I was about to die, and week-long struggles just to get up and move from room to room without being out of breath, I have slowly moved to a mode where Infusions are a boring morning and I feel like I have the worst hangover ever for 5-6 days. Still not great and very draining, but given the cumulative effects of chemo on most folks, I am kinda experiencing it backwards.

Mentally it’s still soul-crushing to wake up on chemo days and know I am going to go in to get poisoned and feel like hammered dogshit for a week. I fully understand why some people quit treatment early, especially if they are going from “This fucking sucks” to “This feels like it’s killing me more than the cancer.” I think the super-aggressive start with slowly tapering after surgery made it a lot easier on me, even though I have still felt like knocking it off the past couple months.

My last cycle is 3/14 and if I win the cancer lottery I should be able to say goodbye to the pump for good on 3/16. I am not naive though and actually spend a lot of time preparing myself to move back to a variant of the scary level of uncertainty that a cancer diagnosis starts with as my focus starts to revolve around scans and blood tests that are less frequent than what happens during treatment.

I am working on myself physically to help myself mentally. I am hopeful that the kidney tumor doesn’t turn into another emergency that ruins my summer and I can ride my bike to Madison or just anywhere and keep my shit together for whatever comes next. Fear is the mindkiller and all that. Pedalling is a nice distraction, even if I am slow and steady more than in the past. One nice bit of trivia: my muscle memory is still good enough to slap my feet into pedal retention even if I can’t feel them.

Anyway, there’s the rumors. You’ll start seeing me outside more in April and beyond as I get my body back online. Don’t ask me to lift anything heavy though, my flabdominals are fucked.

I hope everyone reading this is well, and I hope you all know I love you.

I mostly only talk here about side-effects and physical maladies, and there is a new one today: my hands are now curling into uncontrollable claws randomly throughout the day, which makes it difficult to put on pants, or do dishes, or type, like I need to do for my job so I can keep having insurance and heat and shelter and all that. It doesn’t last very long at least. I don’t really have much else to say about that problem though except it’s annoying and I hope it clears up before I have to cap’n my ship into uncharted waters. Just another thing.

I don’t share enough about how much time I spend thinking about how I am trapped on a metaphorical planet made of turds and how all my friends are like individual sunrises over the horizon every time I see them or talk to them or just think about them. I am so grateful to share time and space with you all.

That “Liking Gap” meme that’s been flying around lately is super real and if you have ever felt it existed between me and whoever you are, I assure you it is measured in light years. I like you a lot more than you will ever know. I am not very good at showing it, at least up to now, but I am looking forward to practicing.

I also spend a lot of time listening to birds way too early in the morning (and way too early in the year) and looking at trees and generally basking in the corniness of the interconnectedness of all things. It’s partly due to, you know, life-threatening cancer, and partly due to being physically or mentally blocked from doing stuff that I used to use to distract me from life going on and being something to face and process.

I still watch too much TV, and there’s this fortress full of dwarfs to wrangle inside the computer box, but hopefully my brain will warm up along with the weather and I can *DO* stuff and *GO* places soon and on into the future. It’s weird to want to plan, but not quite be at the point where it feels safe to plan. Everything is weird. Cancer is fucking weird.

You’re all rad. I love you all very much. That’s all.

Woke up in the middle of the night because I forgot to set a drugs alarm and slumbered myself right into some minor side-effects. No big deal. Pills down the hatch and I got to see the fattest fluffiest snowflakes slowly drifting down to cover up all the dog poop and half-rotten leaves. It was beautiful and took my mind off things I have been stressing about for a little bit until I fell back to sleep.

I have been reading about how chemo ages your DNA, and coincidentally how COVID does the same thing. Clipping your telomeres and changing you from an old to an OLD.

Between the two I am gonna hit the summer at a chronological age of 49 and a genetic age of something more like 76 according to the tables. I was really hoping for 69, but I am not going to pay for one of those tests just to find out for sure.

34 more hours of the FU pump and then I will start to feel better again. Then hopefully only two more of these cycles and a few months to build myself back up, maybe a quick nephrectomy on the backup cancer, and if my luck holds I can get to remission and stop typing anything about this except for a few times a year when I get scanned and/or scoped.

Then I get to spend the rest of my life working on all the love grudges I have accrued from all my friends doing so much for me the past 7 months. I can hardly wait. Bonus checkpoints all the way down.

Happy Thursday!

I have to give a shoutout to the folks that came up with Protonix. One of the worst things about the first few months of chemo was a constant and horrendous heartburn that antacids and various stomach acid reducers did nothing to solve. Eating Tums was like tossing an ice cube into a furnace. Just nothing, except maybe explosions. 5-FU does not fuck around when it comes to F’ung the U that makes up my insides.

They gave me a prescription for this stuff and it almost immediately turned me into a simple burping machine instead. It’s bizarre because the nausea wears off with the chemo over a week or so, but my body still wants to throw up, so I go through spasms where my digestive system feels like it’s definitely tossing everything into reverse, but without the mental trauma of actually feeling pukey, and I never (so far) throw up. I just make a lot of really gross noises, and occasionally a yelp when things happen fast enough my poor liver gets pinched or poked.

Chemo still makes me absolutely miserable, but as it wears off, this stuff removes the one of longest lasting and more debilitating side effects and lets me focus more on things like “Can I balance well enough to walk?” and “Can I see?” and “Will I poop my pants today or not poop for a week?” It’s nice. Life is so rad.

Another good thing is the generic name is pantoprazole so I wake up every morning and pretend I am a waiter at Olive Garden that was just dared to serve everyone in an exaggerated Italian accent with the obvious mispronunciation.

Every day is a bonus checkpoint. Happy Tuesday!

I have the best Oncology team in the universe. Spent some time joking around with the PA about zoomer doctors and invented the Just Good Vibes Clinic.

The scan results are good. I am getting referred to some renal specialists since the kidney tumor has grown a bit, but kidney function is fine and there is no urgency. Everything else looks basically as expected for someone under aggressive treatment. No new tumors, though my markers remain high. Looking at some new tests to check for tumor DNA in my bloodstream. This will likely not be covered by insurance, but we figure more information is better and it will help justify more and better scans.

Still getting Oxaliplatin for now, but the neuropathy is progressing as I start cycle 9, and it seems likely it will get dropped or drastically reduced in dosage before I get to 12. Chemo was fine today. I think going through the roughest, most aggressive dosing early on makes this gnarliness seem much more bearable. It’s still like a week long bottom tier hangover, the kind that makes people swear they’ll never drink again, but I don’t feel like parts of me I want to keep are dying. Nothing is scary about it, like the Irinotecan made me feel.

I am feeling pretty crummy all the same and I expect after a scoop of medicinal mac and cheese from incredible friends and an episode of The Great Pottery Throwdown I will go lay down and see if sleep is possible.

I am a little bummed that a Shiverwest24 is happening this weekend after years of hiatus and I am going to miss it, but I am overjoyed that people will be out there having fun. The weather looks like it will be rad for biking if maybe not for all the bonus stops. Oh well, look for the brightside of every circumstance and head toward it full speed. If I have learned nothing else I at least know that is the best way to live.

Happy Wednesday my dudes!

Hello. Today marks 6 months since Doctor Chad found a tumor up my butthole.

As a present from the universe, I got my CT results from Wednesday. No doctors or medical professionals have looked at them yet, but modern medicine means I get access to the report. Sometimes this is a cruel joke, sometimes it’s super interesting.

From my amateur reading of everything, I continue to be Going Through Some Things™ but the news isn’t anything scary when I compare it to the past CT results.

1) No new lesions noted anywhere.

2) The write up of my liver reads like a doctor’s polite way of saying “holy shit what truck hit this organ?” but again, nothing along the lines of “24 new lesions noted in segment 6” or anything like that.

3) My spleen is enlarged. I always wanted a big organ. Call me a Size Spleen.

4) This radiologist says my Kidney tumor has grown at 1.4cm, but since August it has been listed as anywhere from 9mm to 1.5cm so I am taking that with a grain of salt.

5) But only one grain because this radiologist is also making note of a 4cm aneurysm in my ascending aorta and so let’s not boost my blood pressure.

I am not saying this is nothing, but I also don’t think it’s a new thing as a CT scan back in October notes my aorta as “3.8cm in diameter” which is enlarged for sure and needs monitoring/fixing. I think different docs use different words for the same thing and I got a dramatic MD this week.

That’s that. I have clinic on Wednesday to review with the pros and unless I get a call from someone saying “head to the ER” I am just going to keep on keeping on and be thankful there’s no immediate recurrence of new cancer.

Only 4 more chemo infusions to go!

It’s the tail end of a chemo week and I feel like poop and most of my time revolves around trying to poop and trying not to throw up and that’s just part of the cycle and nothing worth describing for the 1000th time. My lab numbers are all good except platelets, so no knife fights this week.

Oncology is pretty concerned about how bad my neuropathy is getting so we’re onto a treatment-by-treatment schedule. The goal is keeping me alive wihle also able to walk and safely use my hands. The fun part of this process is neuropathy is a delayed side-effect, and it *should* go away over the coming months, but we have to kind guess where the line we don’t want to cross is where it becomes permanent. Anyway, if you shake my hand in the coming years and it feels like a you’re grabbing a ziploc bag of skinned buffalo wings, that’s why.

My first non-baseline post-surgery scan is on Wednesday. We’ll see if I got any new lumps. Cross your whatnots!

I had a follow-up meeting with the GI surgeon this morning and everyone is very happy with my pooping and lack of hernias and my very pretty scar. I have been cleared to exercise and get my shit together, carefully. Still not ready to shovel a foot of snow if it happens tomorrow, but by the time I am cleared to ride bikes again, I hope to be able to do so immediately.

Another surgical follow-up appointment in April when chemo is (hopefully) over unless the scan on the 24th shows something scary earlier than that. Other than that I won’t see them again until my next colonoscopy IN NOVEMBER!

It’s possible I am done talking to surgeons for awhile! Woohoo!

I will be best friends with Oncology for the foreseeable, but there is this weird calendar on the horizon where it’s possible I won’t be visiting a hospital every week for something or other. That’s gonna be weird.

Then, putting aside the stupid chances for a dumb relapse, we get to start talking to the Kidney folks about Backup Cancer. That’s not until June though, and the way my brain works right now, June is on the same timeline as the heatdeath of the universe.

Happy Monday!

First tumor rumor of 2024!

First of all I want to say that as impressive as all the medical doctors I have dealt with have been, I hold the PAs and NPs and RNs first and foremost in esteem. They are all just so damned good at seeing me as a person and not a puzzle to solve, and generally a lot more willing to laugh at my terrible jokes as well. I am eternally grateful to all the medical professionals that have saved my life so far, but the MDs are not as fun. I think that’s the point maybe.

ANYway Oncology this morning looked at my last two weeks and said “You are allergic to one of these chemo drugs, and this other one is giving you too much mustard as well, so we’re changing it up” and starting tomorrow I’ll be on a less debilitating regimen. I have been assured this is not unusual, and should not greatly affect the outcome we’re aiming for (NED) and so I am comfortable being more comfortable. I still have a pump latched to me for a couple days and I’m still gonna be feeling not very good, but at least I shouldn’t have my neck swell up or lose control of my nervous system anymore. More limb control is a good resolution for 2024.

Two more chemos until the next scan and we see if I am lump-free. Cross your fingers!

That’s pretty much it. Having cancer meant I got a prompt Paxlovid prescription when I popped positive for COVID last week, and after 5 days of having my mouth taste like a tire fire being put out with the dripping of a tipped over port-a-potty, I tested negative, so silver-lining there I think.

It has not been a great holiday season, and combined with the past 6 months I have really let my depression get way too far back in the driver’s seat lately, so that is something to work on in my free time. I have also started and aborted a crochet project 4 times, so that’s on deck for the dark cold winter. I’ll get the hang of it eventually. Life, I mean.

It is Wednesday my dudes!

I am going to vent here a little bit because I am in some pain.

It hasn’t been a week yet since the last infusion but I have to say this has been one of the more demoralizing cycles so far. By the end of October I felt like I had a good handle on side-effects and expectations for each cycle, and while I hated it, I was dealing with the worst of how it made me feel and avoiding major effects except for some issues I won’t go into great detail about regarding bleeding. Oh and the mystery fever. Forgot about that. I guess I forgot about a lot of it in a very short period of time.

The recovery from surgery seems almost illusionary right now in a lot of ways. Everything feels worse than before. More drawn out and grinding. I know that is almost certainly in my head. Obviously I am starting from a weaker baseline than I was at the start, but the insidious thing is last Tuesday I felt strong and normal and like I was starting over. I felt like I had all the strength I had at the beginning, and even more because I’m not as naive about chemo as I was.

Woof. That was not the case. It has been an exceedingly cruddy 6 days. I am also aware that I am in a whiny mood because I so badly wanted this to start back up more smoothly. It’s not as bad as it could be. It’s worse than it has been, is all.

It’s six more cycles. That’s all. Some nausea, some acid reflux, some nerve damage, some insomnia and pain. Those kids crashed in an airplane in the amazon and made it out alive after over a month with no one to help them. Three months of chemo is not as bad as that.

I also know that my medical team will listen to me and tune dosing or other things to help me get through. There are tools and tricks to make it better over time. I’m just really in it again and fuuuuuuuuuuuuck. Wasn’t ready.

I’ll be ready for tomorrow.

Thank you for reading. Happy Tuesday!

Pre-infusion lab results came back pretty decent this morning. I even have some red blood cells again!

I am still slightly anemic, and my liver enzyme numbers are a little unusual if you didn’t know my liver was recently torn apart and put back together, but nothing that concerns any of the experts. Kidneys are still doing their thing, so Backup Cancer is not doing anything scary at the moment. CEA numbers didn’t go down, but they also didn’t go up, and I haven’t had chemo for 2 months now so that counts as a mildly positive news item. All that stuff gets tracked for a few more cycles to see if there’s a trend before any fresh new hells are unleashed.

Tomorrow morning I go back into the loving embrace of the poison robots, and it will be a long dark winter and we’ll just keep going and going. I am not happy, but I am in a better place mentally than I was when this all started, and at least the poison is getting injected into a body that does not contain any large tumors (not counting Backup Cancer, which gives no shits about this chemo).

I am weaker than I was at the start, but wiser in the sense that I carefully documented the first 5 cycles and am armed with better plans and more tools to maintain an acceptable level of functionality and ability through the bad days. I will admit I let the past few weeks snap me out of the day-by-day attitude I had been maintaining before surgery and I forgot that I am not even halfway through the beginning of whatever we want to define as “the journey” through treatment of metastatic cancer.

It was kind of nice to have a break and be reminded what it’s like to not have chemo fuck up your whole being. I don’t suggest major surgery to most people as a vacation, but it worked for me. I will do my best to remember how I feel today as I grind through the next 3 months, and that will also be something that I didn’t have before, because I started chemo last summer already dealing with symptoms from the cancer.

Once again I want to scream from tall places how amazing my friends and family have been, and how there is no way I can imagine I would have been able to stumble through all the challenges without the support and love I have gotten from everyone. I have some fancy paper and some addresses and I am going to scrawl some barely legible sap at you, for real this time. I am especially lucky to have Ellie still standing by me and keeping me from getting derailed. I don’t know how to say everything I want to say about her. Me not words good. My only option is to stay alive and get my shit together so I can show her how important she is to me.

Happy Wednesday, my dudes!

News! Breaking! Broken News!

More labs and an Oncology meeting this morning and now we have next steps. I am very very very lucky, as is obvious to anyone paying even the the most cursory attention to this whole mess, but I am not so lucky that I get to just walk away after surgery. They still want to mop up any microscopic little fuckers in there that are lodging themselves in all my soft comfy organs, and that means back on the chemo train. No surprise at all, it was just a matter of asking when and how much.

Initial schedule is 7 more cycles of FOLFIRINOX to make a total of 12 along with the pre-surgery run. I will start next week. At some point around cycles 3 or 4 they will scan me again, and mmmmaaaaaaaybe if my body continues to be super-rad at chemo and my cancer continues to be super-bad at surviving I can end early, but most likely I will be getting beat up by the drugs until mid-March.

The part that sucks, is chemo. I know what it feels like, and I am not looking forward to going through it anymore, especially in winter when the cold sensitivity and neuropathy are going to be that much worse. I am not super happy about 7 cycles, after learning what 5 did to me previously. I am also 100% committed to doing whatever it takes to give myself the best chance to still be alive in 5 years, and this bullshit is what it takes.

The part that rocks, is I know a lot more of what to expect from chemo and how to manage the side-effects. I am not pretending I am so good at the process that chemo is no big deal. The shadow of the deal blocks out the sun of my psyche and makes me extremely apprehensive. I am going into it with a lot more information than I had the first time around though, and I also have the experience of what it feels like to recover from chemo for a couple months, which is such a relief. I have this idea of what I think I *should* feel like in May, only next time I am past chemo I probably won’t have major surgery a few weeks in and spend half of it feeling some of the worst pain of my life. I will just be happy to ride a bike and eat ice cream. Maybe take my shirt off at the RW24 sign up and gross everyone out.

Anyway, them’s the rumors for today. Tomorrow is tomorrow, like always.

Happy Monday!

When the surgeons closed me up after they got done with work they went a little overboard with the glue at the detour around my navel. They not only closed the wound, but created a bit of a splash zone in that area. I guess they were trying to be thorough at the curve, which is fine because it did pop open in the hospital and ooze for a few days.

For the past 3 weeks my soul hole has been plugged up with a big wad of superglue and dried blood. I just managed to get a grip on it and yanked it out. It came out in one solid piece and it felt amazing and now my bellybutton can breathe again.

I did not take a photo. Imagine a small bit of beef jerky shaped like the negative space of my navel. It didn’t smell like anything. It made a satisfying thud when I threw it in the trash. I did not taste it. You people are disgusting for even thinking it.

Two weeks ago at this time I was splayed out, cut open, and they were taking filets from my liver.

This morning I woke up and put on hard pants and walked 1.5 miles for coffee without a single groan or moan. I slept on my side last night. I was given the all-clear to start slowly adding fiber back into my diet yesterday. My poops are the poops of a normal man. It still hurts to cough or sneeze or burp or laugh, but not so much it short-circuits my brain.

Modern medicine is pretty wild, and following directions actually results in healing. Who knew?! It helps that I am buoyed by an ocean of fun and interesting people and my mindset is stuck on “life is so rad” most of the time.

More surgical follow-ups this week, where it will likely be the same news of “you’re doing good, keep it up” and then back to Oncology in a couple weeks to restart chemo for the rest of the winter to try and make sure any little microscopic lumps get obliterated and I won’t be doing this all again in 6 months.

You won’t likely see me until late spring, but when you do I will show you a cool scar.

The pathology reports for everything they cut out of me last week just came in.

Highlights:

-The words “No viable cancer cells found in margins” at least 15 times

-My diaphragm biopsy was just a cyst

-They took 50 lymph nodes! 50!

-Colon Robinson was taking up almost half the diameter of my colon, and had 4 polyp sidekicks.

Overall pretty good news and aligns with the scan results that show they likely got everything gettable. I am still deep in the woods, but starting to feel like I am on a path towards another biome.

I feel very lucky to have found the surgeons and oncologists I have, and am profoundly grateful to them for their expertise and strategic approach.

I am not even going to talk about how I feel about all my friends and family because my thumbs will wear through the glass on my phone before I scratch the surface of describing how thankful I am. I am still keeping a list. You’ll see.

Anyway, that’s it.

Happy Tuesday!

Hello. At home and still alive.

I say it that way because there was a small fuck-up yesterday evening that absolutely traumatized me and probably Ellie as well.

The thing about being in the hospital is there’s a whole system in place to keep you on schedule and platoons of people making sure you take your drugs and do your things and monitor your results and the entire environment is built to make it easy to get in and out of bed and take a shit and just generally be a wounded human being trying to get well.

A whole morning of great news and getting booted out to the street with a bag of drugs and a smile led to me taking my eye off the ball for a bit and then getting distracted by just how low and deep the couch is and next thing I know I haven’t eaten properly and all the painkillers have worn off and my BP is like 160/110 and I am shaking with pain and I am rushing to catch up and get back to a place where I am not actively wishing I was in a coma.

I will spare all the details but the part that got me into a life-changing place is too stupid not to describe.

I decided angel hair pasta was too hard to chew and my stomach was pissed off at me so I chose to have a banana to act as a buffer for the massive hit of tylenol that was gonna land directly.

I was so distracted by pain that I didn’t concentrate and eat it slowly, but more or less inhaled it in a way that would be banned in american theaters if filmed.

You’re probably thinking something like “what an idiot, he probably got nauseated or threw up or bad stomach cramps” but no, as horrific as that would have been, this was worse.

After eating and going upstairs to the bedroom to try and lay down (just getting into bed was a whole ordeal) I realized that I had a little banana-ish tickle in the back of my throat. It kept making me want to cough or clear my throat, and every time I did, my shredded abdominal muscles screamed with pain, and so did I, which made it worse. The cycle ramped up and up and up until I was coughing and crying and whimpering and basically nearly out of my mind with pain.

I have no idea how long it lasted, it could have been 15 minutes but it felt like hours. It was the worst pain I have ever experienced and I hope my brain forgets all about it. I hope I didn’t panic Ellie too badly. I know she was really concerned trying to help while there was really nothing she could do.

Eventually the drugs kicked in and I passed out for a bit and when I woke up we worked out a system to stay on schedule.

So anyway it was a rough evening and a decent night’s sleep where I only woke up once to sprinkle a little opiod (ugh) on my nervous system and this morning I am back on my bullshit.

Woke up at 5:30 like the new usual, wandered around the dark apartment, sipped an Ensure, made some jokes. At one point between my slow shuffles and standing and sitting “exercises” I laid in bed and found a position where I was pain free for the first time in a week. That was cool. Problem is if I stay like that I will not heal well and probably learn the hard way about thrombosis, and so I am up again, occasionally yelping when I move wrong or burp, and wandering the apartment showing my belly scar it’s new home.

Happy Monday!

When I woke up today I was hooked to 3 infusion pumps and not allowed anything but clear liquids. I needed dilaudid just to get 3 broken hours of sleep.

By 9am I was unhooked from all tubes.

By 10am I was told I can eat anything on the “low-fiber” menu as long as I ate slowly and chewed everything 1000 times before swallowing.

By 11am I drank about 4 sips of The Daily Bird delivered by the inimitable Ellie Piper. I couldn’t do the whole thermos because *gestures broadly* but Ellie took one for the team and had her 3rd coffee of the day so it didn’t go to waste.

By 1pm I had learned how to give myself injections of blood thinners I will need to do for the next 30 days, had dammed the leak in my belly button, and was moved completely over to oral medication for painkillers and muscle relaxants that are the only thing keeping me from screaming 24/7

My sister stopped by and that was nice. She was extra kind and didn’t make me laugh at all so I wouldn’t turn inside out. In return I only talked mild shit about her husband ABANDONING HER IN HER TIME OF NEED TO GO SEE DAVE MATTHEWS OF ALL THINGS.

By 4pm I was scheduled for a last CT scan to set a new baseline for any remaining lesions in my liver and all but told I am getting discharged tomorrow.

I had a really rough afternoon with pain but my nurse is incredible and I took the opoids and other advice and in 30 minutes I will get in the radioactive tube and in an hour I will get some more pills that will hopefully let me sleep and then tomorrow I can go make a mess in our own home again.

Oh. I pooped three times today. Each time the equivalent of someone stomping on a bottle of hershey syrup. So weird. I am a machine that turns alfredo into pain and brown slime.

I had surgery on Wednesday and between the prep leading up to it and the wild day itself and the pain and recovery process I haven’t followed up here yet. Here I am doing that while my remaining guts gurgle and scream at me

Tuesday was all prep. Similar to colonoscopy prep but because they’re not trying to make me spotless to look at, just empty me out and get rid of all the flora and fauna in the area I was allowed a light breakfast and then spent the rest of the dauy drinkiny gatorade mixed with miralax and a series of laxative pills and antibiotics. Nothing I haven’t been through before and kinda nice not to have to chug 4 liters of slimy laxative without flavor.

Surgery scheduled for 6:15am the next day so shower and anti-septic full body rubdown and early bedtime. Woke up hangry for another wipedown and off to the hospital. Everything went so well and so fast in pre-op I didn’t have time to be nervous. Ellie got the “what do they do with your arms?” question out when I forgot. Answer: sometimes to the sides, sometimes splayed out on boards like a crucifixtion. In my case I got a half-Jesus with bonus stirrups. The anesthesiologist swore he wouldn’t use my arms like motorcycle handlebars but I don’t know if I believe him.

The plan was for a bunch of liver ablations and resections and the colon resection. Once they got in there with ultrasound it seems like they had trouble pinpointing the smaller lesions because the chemo was so effective, so it became a bunch of resections and an ablation. They really chopped my liver up.

I woke up to an incision from the bottom of mt sternum to my pelvis, held together with glue. It’s been a few days of shimmering brilliant pain whenever I have an unexpected cough or burp. Otherwise it’s just an ongoing general pain when I am awake, which is always.

The drugs help but they also stop me up which is causing new layers of discomfort behind the hotness of my abdominal muscles being pissed off.

One of the surgeons also took a biopsy of my diaphragm, so breathing hurts.

I got the catheter yanked out of my special purpose yesterday. Got 2 IVs removed today. Managed to fart convincingly enough that I am now allowed to eat jello and broth.

Life becomes small steps. I can get into a bath tub. I can put on socks. I can walk 150 feet.

Eventually I will do enough of these thing that they will send me home where my job is to heal up enough for more chemo.

I am very very tired so if this doesn’t make sense, take that into consideration.

Cancer sucks. Fuck Cancer.

My hair seems to be growing back curly, which led to a realization this morning during Shower Thoughts.

If it really does stay curly enough as it grows out I will finally have gone through all the stages of Stooge:

Shemp/Moe in high school

Curly a bunch of times over the years

Now I will finally achieve Larry.

It’s been a minute since I posted anything, and I just threw a backdated update from a week and a half ago when I was minding my own business and ended up in the hospital for 5 days with a fever and the worst blood numbers I have had, probably ever. They still don’t know what caused that, and I have been ordered not to do it again, so I am working on that. Here’s the current state of my guts.

Surgery is still scheduled for November 15th to open me all the way up, take out my sigmoid colon and a bunch of lymph nodes, my gall bladder, and basically shred my liver to get all the little spots out. That has not changed. I learned my colon will be held together with titanium staples, so I’ll have titanium on both ends of my digestive system. Kinda neat.

We had the pre-op physical a few days ago and prep for bowel surgery is similar to prep for colonoscopy, except instead of all the nooks and crannies being clean, the goal is to wipe out as much bacteria in my gut as possible to help avoid infection. This means I can have red jello, but I am also going to dose myself with a literal shitload of antibiotics in the middle of chugging gatorade mixed with miralax. Then I will be unconscious for basically the entire next day, then I will be on liquids for a day or two after. The first solid food is going to be my new favorite forever.

Today I had a number of appointments. That number was 3. The first one, and most important, was a referral to a new and fun cancer clinic to take a look at what I am referring to as my backup cancer. I haven’t talked about it much because I have been focused on surviving the colon cancer that is actively fucking me up, but there is a 1cm lesion on my left kidney, perched up there like the pom-pom on a winter hat, and my GI surgeon suggested that “while we’re in there, maybe someone from Urology wants to hop over and lop this off at the same time” and setup a referral. Today was that meeting. The first thing they said to me when I met the NP was “Who the hell is your surgeon? They’re a real bulldog. Called us up and tried to bully us into joining in on the surgery next week.” I love my surgeon.

Apparently there are not a lot of emergency surgeries at short notice in the Urology section of cancer care. It was a good meeting though, and the cancer there is not a metastasized lump of the CRC, but a coincidental second redundant cancer that is slow-growing and unlikely to spread. The specialists want to watch it over time since all signs show my kidney function is normal and it hasn’t changed much if at all over the many scans I have gotten the past 3.5 months. I will see them again in 6 months and we can decide if intervention is required, or more watching, or if it is one of those things that will bother me in 20 years if I live that long and in that case, not really something to worry about.

Bloodwork came back mostly normal for the first time since diagnosis. That makes sense because I have been off chemo for 3 weeks and I have been exercising and resting and hydrating and all the good things I need to do to put myself in a place to make it through this. I am ready for the knife. Cut me doc!

Oncology has been “chart-stalking” me for the past 3 weeks and apparently cheering me on behind my back. It was a really good meeting with them this afternoon. They’re 100% behind the decision to stop chemo early and go for surgery. I will go back on chemo 4-6 weeks after The Cutting for another few months to try and make sure they got everything that doesn’t show up on scans.

It’s not clear yet how long the next round of chemo will be. It will still be FOLFIRINOX. It will be between 2 and 6 months. I am going to hope it’s 2 and try not to think too much more about it.

It is likely that at some point during adjuvant chemo they will pull the Oxaliplatin out of the regimen and switch to FOLFIRI to avoid permanent neuropathy in my extremities, which is a small good thing, I guess. I have learned how to tolerate chemo as well as I think anyone can, and I hate it as much as anyone can hate a thing that is necessary to stay alive.

So that’s that. If you’re reading this, you’re all caught up. I have to stay healthy until, through, and after surgery. I am physically in decent shape. I am mentally a little bit freaked out because I have never had surgery before so leave it to me to have the first one open me up from stem to stern and scoop out a substantial part of multiple organs. I will be in a lot of pain and probably confused and stupid. I’ll post a lot.

Happy Wednesday my dudes!

Everything is about balance. All the good news this week needed an opposite weight on the scale.

I was lucky today to finally be able to hug Melody after so many months and hang out and joke and eat good food. It was a great end to a great week, and then I got chills out of nowhere.

Teeth chattering uncontrollable shivering and no ability to feel warm even with an electric blanket and I don’t know how many others piled on top. Those chills preceded a fever that climbed to 101F and some discussions about calling professionals. I stupidly forgot I am a cancer patient operating a body beaten up by months of chemo. Tried to play it off.

That was my body’s cue to spike a fever in just a short time to almost 103. No fun. Apparently when cancer patients get fevers they really go Buster Poindexter (Hot! Hot! Hot!)

I cannot say enough about how great Froedtert’s 24 hour cancer clinic is. Instead of spending 8 hours in an ER we can have a triage nurse slide us into a slot in a specialized clinic and the nurses and doctors are part of the same team that are already treating me. It was a chaotic nightmare getting parked and into the building because of the timing, but the staff are all amazing and immediately started working to figure out the cause and how to help me.

There’s nothing obvious as a cause, and it took 4 hours for me to get under 100F, so they’re blasting me with IV antibiotics and have admitted me while we wait to see what grows in the blood cultures. The entire focus is to make sure I am in good shape for surgery, which would not have happened in the ER. I am very lucky.

As I type this a nurse is asking me all sorts of questions and preparing me to not get a lot of sleep tonight because the usual vitals and labs and IV changes and such, but I feel much better and I am treating it as a practice run for not getting any sleep after surgery.

Anyway, good night, and be cool, because I cannot.

If you see Ellie be extra-nice to her. She has been a fucking rock during an incredibly stressful day.

Last night I spent more time in an MRI machine than I think I have in any of the other three times I have been in the tube. They were very thorough, and not very good at placing an IV for contrast, but it’s OK because all that time listening to the SiriusXM Classic Vinyl station overlaid with robot techno resulted in a lot of very good images of my liver. I wear these low-platelet bruises happily.

This morning first thing we went to Froedtert and met with the team that’s focused on my liver. They are happy enough with what they see that they have scheduled surgery for November 15, and want me to cancel future chemo appointments. If there was any real negatives in the conversation it was a sense that chemo has been almost too effective and some of the smaller lesions may fall below the threshold of what they can feel or sense with ultrasound during surgery, but what a problem to have.

The original plan of a major liver resection has been modified to a series of small wedge resections and ablation. My gall bladder is also due for the biohazard bin. That changes the procedure from robotic to a traditional open surgery, but again, just tell me when and where to be. I am going for Best Cancer Patient 2023.

My sigmoid colon will be removed at the same time along with a whole bunch of lymph nodes. I meet with my GI surgeon in a couple weeks and will also get a full body scan before surgery just to be thorough.

The tag team nature of the surgery and the “dirty” colon and “clean” liver mean it will be a lonnnnnnngggggg surgery. The most surprising thing I learned today was how long each ablation takes. They pinpoint a lesion, send a probe to it, cook it for 10 minutes like some sort of high-tech curling iron, let it cool for 10 minutes, then cook it again for 10. 30 minutes per lesion. I have 13 lesions. Not all of them get ablated, some come out in slices but yeesh. I won’t care because I will be travelling the land of wind and ghosts, but anyone looking for updates on the day of will need to be patien0t. It happens on a Wednesday, my dudes. Auspicious.

Assuming everything goes as expected I should be out of the hospital well before Thanksgiving, but I won’t be helping anyone move any furniture for a good while.

My job until surgery is to get as healthy as I can and exercise and not catch covid or flu or whatever.

This is not the end of anything. There’s a significant chance they won’t be able to get everything. I’ll be back on chemo after I recover enough that that won’t kill me. Statistically there’s a high chance of relapse, and I will be getting scanned and bloodsucked at varying intensity of interval for the rest of my life, but this is the first actual curative step and I am looking forward to the terror and pain.

I don’t think for a second that I would be in this position without this horde of people supporting me in uncountable ways. It’s really easy to be the guy making everyone in a cancer clinic laugh when you have hundreds of friends doing everything to make you feel like a superhero. I owe you all so much and I love you all so much I will never ever be able to convey it.

Everyday is a bonus checkpoint.

If you had the opportunity to get outside in 80F weather in WI in late October today and didn’t take it, I am sad.

I am not judging you, I have skipped nice days before, and all reasons are valid. I am just sad thinking about it, because I haven’t ridden my bike since the RW24, and I haven’t gotten to go hiking or camping or even my usual The-grocery-store-is-5-miles-away-but-I-really-want-a-specific-brand-of-frozen-pizza-and-I-have-good-shoes tromping around the neighborhood. I miss moving around so much.

I am feeling sorry for myself. Which I know myself well enough to know is a symptom of anxiety. I am nervous because the idea of surgery freaks me out only a tiny bit less than the idea of not being able to have surgery and that decision point is coming up quick. I will face whatever comes like I always try to do, a little bit of whining, a little bit of joking around, and head first.

I just geared up with my walking stick and managed to make it all the way around the block before I was too exhausted to continue. It was worth it, even if maybe not the very best idea. Most of my brain still thinks it’s summer, because of the trauma stamp of when I was diagnosed, so being outside in the dark in the warm breeze was something I needed, even if the leaves on the ground are confusing.

A whole gang of people did a lot of really nice things for me today, and I have tallied them all up on my Love Grudge list for future positive revenge. I am extremely lucky and very grateful. I can’t wait to figure out what my physical limits are going to be so I can push them giving back for all that I have been given over the past 3 months. And the 49 years before that.

Happy Tuesday!

I have not updated here the way I meant to. A lot has happened, and nothing has happened at the same time. The cycle of chemo treatments is just the same shit over and over with a new cavalcade of side-effects to deal with, mostly related to things going wrong with one end or the other of my digestive system.

The big news is I have an MRI scheduled for tomorrow, and meet with my liver surgeon on Thursday to review. If things have gone the way we hope, I have surgery scheduled in Mid-November and they will take out my sigmoid colon, a whole bunch of lymph nodes, a good chunk of my liver, and probably my gall bladder. If not, then whatever is next will be next. If you’re reading this earlier than October 25, send good thoughts!

I will dump here some stuff I typed into facebook or other places the past few weeks in case you want to get an idea where my head has been and date them all appropriately so they align.

Thank you all for being so rad, not just now, but for as long as I have known you. I don’t think a whole lot of non-bot strangers are hitting this thing, so I am confident in saying that the human beings reading this are the finest human beings wandering this rock.

I have spent a lot of time saying things like “I am thankful for my health.” but I really had no idea what that meant. I still don’t but now I am at least aware of the fact that I am only just beginning to experience the unavoidable transformation that will be the rest of my life. There are a lot of little things I took for granted, more and more things I am noticing I still take for granted, and weird shit that is happening to me that gets stuck in my head.

I don’t have anything remarkable or especially thoughtful to say here this morning. I have insomnia and physical problems and I am mostly thumbing this into my phone to avoid looking at the horrors of the news and to do something quiet to pass time without making noise that could awaken Ellie. DO NOT DISTURB THE SLUMBER OF THE SAINTS.

Anyway, I was thinking that up until this past July I would make maaaaaaybe one medical appointment per year? Maybe a couple per year if I did something stupid to myself. I did a count just now and I have 11 appointments in the next month. So far. It will probably be more.

I go to the hospital more often than the grocery store. I can tell I am still a newbie too because I am only just starting to have the “Oh here comes trouble!” exclamation from staff and I don’t know everyone’s name yet. It’ll get there. I am always That Guy for places of repeat business. I am not the greatest at making friends and there’s something atavistic about being an old midwestern nerd that sets me off when there is an unfortunately captive audience in front of me. I do not want to annoy or torture the folks that work at the places I go repeatedly. On the contrary I think I try to be the best possible customer/patient/client they see in a day because I still remember standing behind a register or desk for way too many hours and dealing with too much bullshit. I am probably still getting on folks nerves though because I am either trying too hard, or taking too long, or it’s Thursday and you know how Thursdays can be.

Is there a such thing as Regular Syndrome? There’s gotta be. I am probably a textbook case.

Change of subject: I got a new ridiculous bed for the first time in over 10 years and I am pretty guilty at how fancy it is but you can’t take anything with you after all and I just hit a button on the fucking remote it uses and as I am typing this it is raising me into an upright position and I just whispered “fuck yeah” to myself in the dark. Space bed. The future is now.

What else can I share? Oh! Smells!

I don’t know what happens to other folks with cancer, or my type of cancer, or my specific chemo, or if I am just a beautiful and unique creature but over the past few months I have started emitting some ~*☆S T A N K☆*~ in just about all the ways a person can stink.

My personal flora and fauna are definitely mutating into something that produces the opposite of aromatherapy. Stenchtrauma? Funkderangement? It is abhorrent and constant and I am lucky Ellie hasn’t locked me in a hermetically sealed room to suffocate. Yesterday I caught a whiff of my left armpit and my eyes are still watering. When I fart it’s like the Daffy Duck cartoon where he can only do the exploding stunt once, but I do it over and over again. I am a walking superfund site. Chemo farts are no fucking joke. I need new booty shorts with “This place is not a place of honor… no highly esteemed deed is commemorated here… nothing valued is here.” screenprinted on the back. Except they have to be made of asbestos or they’ll just vanish like flashpaper the first little toot that squeaks out.

Both hospitals gave me binders full of cancer info and what-to-expects and FAQs and neither of them had any warnings about the farts. It’s a major oversight and something I think needs to be more widely known before someone gets hurt. If I farted in a crowd right now it would make the news with the word “casualties” in the headline for sure.

I am out of dumb shit to say for a minute. Anyone got any cool stories? Got any fun questions? Lame jokes?

I know I talk about Chemo Day a lot, but FOLFIRINOX is actually Chemo Days as the 5FU gets injected into me over 48 hours via this little meowing pump that lives in a fanny pack that I do not wear as a fanny pack but whatever.

This means it empties out later today and one of the cool and good people I know will schlep me over to the hospital and the nurses will unplug me and give me a shot to make whatever is left of my blood marrow go into overdrive to keep my WBC/RBC numbers just above “this is not a man, this is a zombie” levels. The appointment is labelled in the system as Fast Track Infusion.

IMPORTANT EDIT: Ellie deemed these days FastTrackFannyPackFridays because it gets a sensible chuckle out of the staff as I am called into the unit. I accidentally took credit for the name on posting because I have chemobrain and can’t remember things. Credit where credit is due! Ellie is hilarious!

It helps that I tend to try to belt it out like a sports announcer but the chemo makes me lose my voice so it’s more of a gurgle and pretty ridiculous.

In other news, I only woke up once to pee and once when Louise threw up a bunch around the perimeter of the room, probably as some sort of warning. The new drug they have me on let me get right back to sleep and I got a total of about 7 hours which is unheard of during my active chemo days so far.

I can’t ever thank Ellie enough for all the help and support she is giving me, but cleaning up cat puke at 3am while I hide my face and try to breathe shallowly to not puke myself is so far above and beyond that if I didn’t have my next chemo appointment ON HER HALF BIRTHDAY I would be jeopardizing her employment by making her play hookie and taking her somewhere super fancy in another city somewhere.

In other other news I am living up to my reputation for best timing ever and ordered a new bed not thinking it would arrive so quickly and in so many parts. A split king will arrive in like, 5 shipments. FedEx is dropping off part of the frame today. It’s 135lb box. There are two people in this house today. Me, who can barely walk up and down a flight of stairs, has a pump and a bunch of tubes attached to me, and can’t afford to get a bruise, and Claudia, who is rad as hell but I bet weighs 2/3 of what the box weighs. I will also bet I am out getting disconnected right around the time the FedEx truck pulls up. This will all be fine. Just another silly thing. I have friends to help.

In other breaking news: You are all fucking astoundingly extraordinary friends and I love you all so much and I can’t wait to see you all for crab rangoon at riverwest arby’s when I am out the other side of this. For the non-locals, do not think for a moment that I am not mapping out an itinerary that will have me loop around a good percentage of the globe to come see you and eat crab rangoons or local equivalent as soon as I am able. I love you all so much.

Happy FastTrackFannyPackFriday!

A couple weeks ago I did a little rundown of what a chemo day is like. Tonight I am going to spit out a description of what Chemo Day Eve is like for me, because it’s that now and tomorrow I am going to feel like shit and will forget.

Due to changing hospitals, and chemo regimens, and holidays messing with schedules, this is the first Chemo Day Eve where I actually got two weeks between cycles, and the main thing I can say about Chemo Day Eve is it’s physically as close to normal as I have felt in as long as I can remember at this point. Not that I feel good, but I feel as close to good as I have not only since chemo started, or since diagnosis, but maybe since last Spring.

I woke up this morning with just a light dusting of neuropathy in my feet, and my usual daily struggle with intense heartburn. Other than that I spent the day not feeling much worse than I should expect as a nearly 49-year-old.

Basically that’s the start of Chemo Day Eve. I wake up after a week or so of just hellish side effects then a slow recession of the worst problems to just burning of various types in various areas, and then I feel like I don’t have much to complain about as the sun comes up on the 13th day.

The thing about not feeling that bad, is that it rams right up against the certainty that I am going to get walloped with the shit again tomorrow. That knowledge comes along just as the brain fog burns off a bit, making it crystal clear exactly how awful it’s going to be, and it’s really hard not to think about.

I put in over 10000 steps today trying not to think about it. I walked all over the place. I walked for coffee. I walked to the top of the reservoir with a Teams meeting running on my phone. I walked at lunchtime and after work and just basically filled my eyeballs with outside and my earballs with audiobooks and tried everything I could within my diminished envelope of action to try and get my mind off the fact that I am going to spend the entire day tomorrow getting poisoned. That is a hard thing to ignore.

It’s impossible not to have some level of anxiety. It really really sucks on a level that I have never experienced, mentally. I have anticipated terrible things in my life. Days I knew were, at the time, going to be the worst day of my life looming up towards me on a calendar. This is different than that, because it’s repetitive. It’s the worst day, again. Fucking wears on you that you know what it’s going to be like, and there’s only the tiniest little bit you can do to try and make it more tolerable.

So I worked and walked and cracked some jokes and just let that mental rain cloud park itself over me because there’s nothing I can do to stop it. I am not generally a proud person, but I do take a certain amount of pride in my ability to not sweat what I cannot control, and this is something I cannot control. That’s not strictly true, I could quit chemo and that is control. My ability to control it would mean giving up, and I do not give up. So that is not an option. My only option is just to keep going. It’s good not to have options.

The warmest, sunniest, summerfall October day I could wish for, and I made the most of it, and I let myself cry a little bit in frustration and I let myself fail a little bit at the things I couldn’t get done, but I know in two weeks I will feel normal for about 24 hours again, and those things will still be there to do and so will I.

Chemo Day Eve is rushing around trying not to think about Chemo Day.

That’s all it is. It’s all you can do and it’s never enough.

Happy Tuesday!

It’s October which means we made it through September which doesn’t really mean anything because the dates don’t matter, the days do.

Yesterday was a really good day. I slept through most of the reaction to my covid vaccine the day before and woke up feeling like I had a bad hangover, which is about as good as I ever feel these days. I took a short walk with a friend and spent the rest of the day checking off things on the Good Day list with Ellie. This mostly entailed errands like running to Target for cleaning supplies or stocking up enough cat food to last until Groundhog’s Day for Screwy, but also some good food times sitting on the tailgate of my truck. I got all my steps in and not only left the neighborhood for a non-hospital destination for the first time in months, but actually left the city for about an hour for a poorly advised trip to Costco. It was so great. It also all took a lot out of me and I basically passed out like an over-stimulated little kid at around 8pm. I probably even had ice cream on my face after going berserk on a chocolate shake (no cold sensitivity!).

This is all to record for posterity that among all the side-effects and travails and slow decay of my physical state one of the primary new talents I am learning and practicing alongside patience is an appreciation for the joy in mundane things. Nothing I can imagine snaps a person out of taking things for granted like a life-threatening diagnosis. I legitimately exist in a state where I say things like “They finally put a stop sign in this intersection! Nice!” and get unreasonably happy if there’s a cool breeze.

I also feel a great deal of joy at the accomplishments of my friends and a very happy weird positive sort of jealousy towards all the cool things you are all doing and I am going to start letting you all know more. Positive jealousy makes no sense. What is that feeling? Pride? Maybe. I am proud of all of you for getting it all done.

It’s another day. Many people are saying it will be a good day.

Happy Sunday!

Today marks two months since someone first set eyes on the mass in my colon. It feels in many ways like it’s been two years, but I am also keenly aware that I am still just starting to deal with all the ways I am changing and will be changed by what is happening. Time and trauma interact in strange ways.

Part of me wants to have some profound statement to make because of the arbitrary date, or that there is some sort of milestone to mark, but there isn’t. Cancer sucks and the only thing to count on is that it will always suck and I will just keep going. Uncomfortable and unrelenting.

Tomorrow is tomorrow.

Happy Tuesday!

It’s day 5 after the latest chemo infusion and I am doing the usual day 5 things. If you are curious, that is:

1. laying around extremely weak after any physical activity
2. GERD, hardcore GERD. The burning is the pits.
3. Pooping and pissing out dead cancer cells en masse

This has been the experience at about this point every round, so it’s good to at least have something expected, even though it sucks so hard to go through.

I do have two new things happening today to add to the circus inside me.

I got my first random nose bleed for no reason this afternoon. Blew my nose just a little too vigorously in the shower. No platelets means it doesn’t take a lot to turn me into a Valu-Rite Romanov. My tapas are jacked. It did stop after awhile, but I have keep a close eye on all bumps, bruises, scrapes, and mistakes.

Secondly, my hair has started falling out in clumps. My hairline has been getting shy for a long time now, which is obvious to anyone that knows me, but now they’re all jumping ship at once. I guess I will go as Gollum for Halloween.

Other than that, I am just bopping around trying to remember whatever it was I was thinking of 15 seconds ago, feeling a lot of love for all my friends and family, and doing everything I can to make my spots disappear as quickly as possible so I can face the fear of surgery earlier than later.

How are you?

It’s different for each patient. Here’s what it’s like for me.

First you go to the Lab. This is a huge waiting area full of people early to their appointment who are sitting well past the time of their appointment. You are also early to your appointment. You will also be sitting here awhile.

Eventually you get called in and a lab tech will walk you into a maze of small cubbies and sit you down in one, jab a needle into you, and suck out an astonishing amount of blood before you even know what happened.

After that you shuffle over to the clinic, check in, and wait roughly 2.5 minutes before one of the kindest nurses on Earth calls you in, weighs you (101.3 kg and holding steady), measures BP and pulseox and other vitals, and sticks you in a room to wait for a doctor. The room usually has one Target-grade print of a focus-grouped non-offensive painting, and one or more illustrations of the digestive system on the walls.

The doctor and/or PA comes in and asks you about your experiences with side effects, suggests things to help, talks about possible modifications to chemo (double the infusion time at half the loading speed), listens gamely to your lame jokes, and makes small talk until the lab results come in and you’re borderline good to go for infusion. If I was not on chemo my blood work would indicate I was dealing with sepsis or maybe serious burns over much of my body. Nope. Just poisoned. Time to go upstairs for more poison.

First you have some food. It’s lunchtime so you eat the PBJ your breathtakingly astounding partner brought for you, and you eat a banana purchased from the little cantina thing next to the wig shop. It’s a good banana even though it’s not in a pie.

After eating you go upstairs and check in at the Day Hospital, which is a funny name for a torture dungeon. They cut off your wristband and give you a new one for some reason. You wait some more. A volunteer comes by at least 3 times and asks if you want a ginger ale or anything. You stare at your phone.

Eventually your name is called and your brought back to a room with a bed and an industrial-grade recliner and a few office chairs. There’s also a poison robot here. It does not care about you.

A very nice nurse starts pre-medicating you by injecting various steroids and anti-nausea meds into the port on your chest. In a fun new twist they also slam in some pepcid and some benadryl to see if that helps you not lose the ability to speak during the infusion. Spoiler: didn’t work, still had trouble slurring later.

Now you are tired and confused and you really have to pee just in time for the pharmacy to send down the first sack of drugs. This is Oxaliplatin. It takes 2 hours to pump in. It makes you feel like absolute shit.

Neuropathy, nausea, fatigue. No fun. You sit there and play mini-metro on your phone and drink warm water and occasionally munch a cracker. You stare at your ever-patient and caring partner sitting across the room in an uncomfortable chair taking care of business. You wait.

A dietician breezes into the room and calls you a rockstar for eating and drinking so well. Tells you milkshakes are good if you can handle the cold. Calories and protein most important. Nice. This helps you make a stupid decision in a little bit.

After about 1.5 hours, a new bag gets attached to the robot. This contains a massive dose of a vitamin that helps the other drugs work more effectively. It does not seem to add any noticeable side effects. It takes 2 hours to pump. Now you are getting up to disconnect thee robot from then wall and roll it into the restroom to pee every 20 minutes.

You do a dumb thing and ask your wonderful partner to bring you a grilled cheese sandwich from the cafeteria. You idiot! Who eats cheese during a chemo infusion?!?! You do.

30 more minutes pass and the oxaliplatin is done. A normal person might think this is a happy milestone in the process. It’s not. Only because they replace it with irinotecan. Often referred to as I-Ran-To-The-Can. It causes nausea and diarrhea so quickly that the nurse gives you a shot of atropine before they hook it up, and schedules a second shot 30 minutes in. Irinotecan takes 90 minutes to pump. This should align everything so that the robot is done as the sun sets.

You start to feel worse. Cramping, indigestion, why did you eat that sandwich? A second shot of atropine should help. It doesn’t. 10 minutes after the shot you hit the call button because you are definitely redlining on the nausea meter. They stop the robot and give you zofran into your port. You are entering another dimension in your mind. It feels like your body is trying to turn inside-out slowly.

The nausea passes eventually. The feeling that your consciousness is about 1″ to the right of your physical body does not. You make some weird noises. They restart the robot. It’s only 40 more minutes to go. It’s a long 40 minutes.

The bags all empty and the robot starts crying it’s robot whines for an adult. The nurses come in and disconnect the robot from the tube going into your chest. They take a new tiny robot and hook it up to the tube. “See you in 47 hours!” the nurse says cheerfully. Nice.

You shuffle step to the parking garage and get in the car and get chauffeured home where you look at this mess you typed and paste it into various websites while working out what your medication schedule is going to look like for the next 6 days. It’s time for bed. I love you all so much.

I am laying in bed, concentrating on what I fully intend to be a virtuoso performance of a full night’s sleep, and thumbing a short dispatch into this poison piece of glass to let you all know I am thinking about you and wondering how you are doing. How are you? Are you cool and good?

I am in that part of the chemo cycle where the worst of the side effects have faded into a background annoyance. They’re still there, but I can go about my day without making any of them the focal point of my plans. Mostly I just feel really run down and old, but myself. Just in time to get plugged back in and dive back down into the shit in a couple days.

It’s weird to be simultaneously apprehensive and bored about that. I know it’s going to suck. I can’t avoid the suck. I only hope it doesn’t get worse than it has been. It will be interesting to go to yet another infusion center, and to get the stuff pumped in later in the day instead of first thing. I wonder how that will change the experience.

I was really grumpy today for various reasons, most of which don’t matter. Not least of the causes being that I get mad at myself for being in a bad mood when I am having a day where I can physically accomplish things. I hate feeling like I am wasting a good day. That is a nonsense statement, as time is spent no matter what, and frustration is as valid as joy as long as you’re aware of the feeling and why and how it’s happening. Doesn’t mean we don’t all fall into the fake idea anyway. I was fully wallowing.

So, it was a pretty cruddy day from sunrise until the early afternoon when someone dropped off what I can only describe as the Platonic Ideal of what a banana cream pie is in this universe. A pie I didn’t know I needed until it was here. A pie that, together with Ellie’s arrival on the scene after work, combined to give me a second Monday on top of the orginal Monday. Beams of sunlight shot from the sky to frame this pie in a heavenly glow. This was a good fuckin’ pie.

That pie reminded me too of all these immensely affecting interactions I get to keep having with people that I used to take for granted. When I do get out of the house I will run into acquaintances I barely really know, who will hand me things they have made for me, and tell me the nicest things, and make me want nothing more than to make them my new best friends. Then I will see one of my best friends and they’ll shuffle around with me and listen to me babble and not mind that I lose track of myself and don’t ask enough about what they are up to and all I really want is to know everything my friends are thinking and doing and dreaming about and you should know that and tell me those things if you are comfortable. Then I will see a stranger and have a silly joyful conversation about why looking up The Aquabats! based on the description on my t-shirt will probably not go exactly the way they might expect. All these people in my goddamned neighborhood are the people that I meet when I am walking down the street, they’re the people that I can’t be me without. It’s corny as hell but I believe it deep down.

Whether I have been annoying you for 40-something years as family or chosen family, or we just met and you still don’t get why I am obsessed with street lighting and ponchos, I am incredibly lucky to get to talk and share and joke with you at whatever interval we allow ourselves. I win the lottery every morning. I am so thankful to be reminded of that, with pie.

Anyway, all of that to say I am in a pretty good mood now at the end of the day, thanks to my friends and modern medical science. I have one more day of normal human me and then it’s back in the loop. If you’re on them streets tomorrow you’ll probably see me because I intend to make the most of it. Gimme a high five or some other suitably dorky salutation and I will tell you all about my last out-of-body experience.

I SLEPT FOR FIVE UNINTERRUPTED HOURS.

This is the first rest I feel like I have had since I thought I got chemo brain damage last Thursday. I am awake super early, but instead of feeling like I am being dragged by my own consciousness from one low-grade torture to another like a TROMA cut-rate Cenobite, I might be halfway human this morning!

Things could have been worse. So much worse, but days and days of nausea and anti-nausea drugs without sleep wear on a person in ways I had never thought about. I journal and scribble constantly but there’s still a lot of blur in the past week. Little snippets of weird memories in a pain/mad haze. At one point I apparently fell asleep in a mild backbend over a pile of pillows and blankets, mouth open and lolling like a corpse. I remember being super concerned about specific types of crackers in the middle of the night, but I don’t know specifically what was wrong with some types versus others. I also got into some sort of conversation about party tattoos with a nurse? Mostly I was just miserable and exhausted. Never slept more than about 3 hours max, and not solid.

I didn’t get the smorgasbord of side-effects like last time. It has primarily been nausea and fatigue, and the nausea has been the worst by a long shot. I will say that the vaunted diarrhea didn’t/hasn’t occurred yet but I did poop what I am sure is a full-size industrial dock piling one day, and the other was something from a 1990s Tool video. Kinda opposite of warnings.

The last two days have been weirder than the 5 before because the nausea mostly passed but it takes a few days for the drugs to clear out.

Fun thing about drugs that affect my brain chemistry? Migraines as they wear off! The other main trigger for me? Sleep deprivation!

Wednesday morning I was blind for most of the morning due to ocular migraines, and that was combined with a confusion and forgetfulness that would have worried me if I had been able to remember to worry about it. It was a long slow day focused on specific problems one at a time, and I felt really good about what I accomplished (dishes, dual-band radio spectrum AI bullshit at work, petting Louise without getting bit). A bunch of amazing human beings came out of the woodwork, uncoordinated with each other, and just kept hitting me with love and jokes and kindness. You all keep doing that and it keeps overwhelming me with love. I am working to deserve that.

Yesterday was really rough. My head hurt bad enough to necessitate a call to the Triage line early in the morning. I didn’t lose the ability to speak or anything, but the pain was out of this world. If I didn’t already have some experience with migraine I might have panicked. Ellie is a badass as always, and got me sorted with the professionals on the phone before she went off to the Book Mines. That and some spinach and a Daily Bird delivery from CSPAN (momming to the max) turned me from a whithered husk trapped by wind against a barbed wire fence of pain, into a basic sort of primate.

Hyrdate, eat, rest, move. Over and over. By 4pm I came out of my personal directors cut of Ttampocalypse Now enough that I managed a 3 mile walk to the mailbox. In retrospect I may have pushed that too far, but it turned out OK in the end.

This is all really rambling. My days are wildly boring. The main thing is I GOT FIVE HOURS OF SLEEP!!! The other main thing is I LOVE YOU ALL!!!

One hour before an appointment and I am reaching a level of high-velocity low-viscosity rear-end mass-ejection that NASA would be proud of in one of their rockets.

I gotta stop getting cocky. It’s cancer. It’s always gonna find a way to fuck me over. Supposed to be quiet and hidden, like a little mouse. Gotta remember.

Anyway, I guess it’s a Loperamide and Audiobooks Friday!

I don’t want to jinx anything but it appears that with judicious use of sparse frequent meals and timing of drugs I am transitioning from pendulum swinging back and forth between 3-9 on a 10 point nausea scale to a state of wonderment at what the hell has been done to my stomach lining? It’s been a long 5 days.

Right now I am emotionally in a good place. I have been writing letters, slowly, and doing small chores when I have energy, and taking short walks and staring at sunrises and sunsets and listening to birds and all the things you do when you have Big Things change. Or at least all the things I do. I shouldn’t speak for others.

I don’t feel fear or anger. I mostly feel very thankful for what I have, and curious about the future, and in general in a way that has been missing from my life for a long time. Sometimes it’s I wonder what it will be like to go in for my 6th cycle? Sometimes it’s magnets, how do they work?

When I am in a negative space emotionally it’s almost always frustration because I want to do something that is beyond my limits, or because mentally I am hitting some patches of brain fog that make me need to carry multiple notebooks around just to remember what I was doing. I repeat myself constantly. I lose track of things, including what I am saying while it’s coming out of my mouth. I can’t think of simple words and concepts sometimes. It would not be a good time for me to try out for Jeopardy. I guess it’s a good thing I got to experience that one bar trivia win a couple weeks ago. That dumb stoned-but-not-in-a-fun-way feeling is why the letters are so slow to go out. I have to focus and hold onto a pen and make things mildly legible, which is a struggle for me at top health, whatever that is. Might be time to bust out the typewriter again. But then it’s a noisy non-late-night thing. Balance. If you signed up for a penpal, I’ll get there, I promise.

Physically I am weakening, but as slowly as I can have any control over. I eat, I move, I sleep, I hydrate, I repeat on roughly 2 hour loops. That helps keep my numbers up where they can keep shooting drugs into me, and helps keep me able to take care of myself when I am struggling with side effects.

As I said, the nausea has lessened considerably since last night, but I have heartburn almost all the time now, because as the drugs kill fast-dividing cells, they have a tendency to hit the good along with the bad, so stomach cells get side-swiped. I used to joke I had the core strength of a newborn premie, but I am pretty sure that’s not a joke anymore. The cold sensitivity, neuropathy, mouth sores, other stuff have mostly been a dim cloud on the horizon rather than front and center this cycle, which is interesting. It’s almost like my body heard me repeating over and over that nausea is my least favorite thing in life, and served up the All I Don’t Want Buffet.

This is what my autumn will be like, if I do everything correctly. Just a long string of days-at-a-time until I get where I need to be to do the scary part with the cutting. I hope you are feeling wonderful and happy if you’re reading this. If you have any questions about stuff I haven’t covered, I think I am getting pretty decent at explaining my personal interaction with this dumb disease and am more than happy to answer.

Happy Tuesday!

It’s only been 47 days since the doc kicked my back door in and surprised Colon Robinson in his slumber. 46 since the party in my liver was rowdy enough to discover. Feels like a year.

It’s 2am and I am awake because I am always awake in the middle of the night because the days after the various chemo infusions are just a constant struggle with nausea. It hit while I was 2.5 hours into a 6 hour infusion and still in the chair 4 days ago and has always lingered since. If I am weirder than usual, that’s why. I probably mis-timed a dose of something to keep it at bay and it’s crawling up inside me.

The primary other side-effect so far is massive fatigue. This isn’t helped by sleep deprivation, but it’s also not just being tired. It’s my blood being depleted of hemoglobin and such so that I get exhausted sweeping a floor or folding laundry. I normally walked at least 5 miles per day before all this. I walked to Daily Bird and back (did not go inside) yesterday and felt like I tried to do a marathon without training. That’s maybe 1.5 slow shuffling miles. It’s really frustrating.

Cancer is fucking frustrating. There’s so little to grab onto to focus on because it’s always changing, and it’s also always tedious and uncomfortable and there never seems to be any break. The breaks are sad shit like feeling good enough to put my bikes away for the winter in early September. And finding some joy in that accomplishment. Which is still on the todo list btw. Tomorrow.

That finding happiness in small things, even chores, has grown so important in my daily life. It’s why I may cry at you if you see me more than a block from my house and we get a fist bump. Life has narrowed so much but it feels so deep. Seeing a friend is like a teenage house party in my head.

It’s raining and I have Zofran hiccoughs so I am going to put this little glass box down and listen to the sounds while I munch on saltines.

I love you all so much. Thank you.

Tonight’s Ttam Chemo Night School subject: Intractable hiccoughs. Yes, that is how that is spelled you heathens. Yes, that’s my new one-man-band/ventriloquist act name (How does he do it? Don’t hurt ’em Ttammer!)

I have done some shit to my digestive and nervous systems that culminates in a circumstance where my stomach really really wants to throw everything out every direction, but various sphincters and tubes are not cooperative. One way this manifests is violent hiccoughing.

This comes without warning, with varying levels of nausea or heartburn, and is virtually impossible to cure with traditonal methods. I haven’t tried headstands because I can’t with this pump attached. I have tried various other things, strong smells, holding my breath, drinking water through a few spasms, for example. It’s a fun little bonus to wake me up/keep me awake at roughly hourly intervals.

The other fun chemo-GERD thing is occasionally having trouble swallowing. That’s thankfully been rare.

I apologize for spelling errors and poor grammar. I am exhausted and thumbing this into my phone and hiccoughing hard enough to lose grip every 10 seconds or so. This post seems longer than it actually is. The night is definitely longer than measurements would indicate. Yes I realize I lobbed a couple softballs for you with those last two sentences.

Anyway, that’s all right now. 11 hours 29 minutes left on the pump and then I can get it removed. I am deeply, maniacally thankful to all of you. That gratitude grows daily. I am not even to the really hard parts of this but I am luge-ing through on a track of soup and jokes and poems and stories and love. I am starting to scrawl out some letters and will accelerate that output this weekend.

Ope! Bar time and first weekend after start of school. Time to go hiccough at the loud drunks outside.

Sing it with me: what the world needs now, is Tums, dry Tums…

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!