Birthday!

My birthdays have been historically really awesome or really “that’s not a great way to spend a birthday.” In balance, like the rest of my life, the really awesome definitely outweighs the other. I’ve started my birthday in incredible places: Ho Chi Min City, New Orleans, Paris, Belize, Laos…this year started with a phone call from my toxicity team at Mayo. Bob and I had seen the numbers come back from the previous day’s lab tests – we’re tracking inflammation of my liver, and had been treating with a high dose of oral Prednisone. We’d also recently started a new oral targeted cancer therapy. My liver test numbers had been bouncing around a little over the past few weeks, but were trending in the right direction – until they went off the rails. The phone call from Mayo was basically to say that they hoped I didn’t have plans for the next few days.

I would need to go down to Mayo every day for three days to receive a steroid infusion, on top of the oral steroids I’m on. Plus an ultrasound and more blood work. So for three days, starting on my birthday, we drove down to Mayo and back. (Just shy of an hour and half each way.) I had a small bright light: Earlier in the week, I’d checked in with a massage therapist who is difficult to get in to see, and she miraculously had a cancelation on my birthday! I planned that first Mayo visit for later in the afternoon, after the massage. Just as the schedule was finalized, my massage therapist had to cancel because of a kid with strep. That was that. I can really only whine a little, though – I just had a week’s worth of massages and meals and friends in California.

And, thanks to the few remaining wonders of Facebook, so many messages! All of your messages and birthday wishes were very happily received, and even though my birthday was bullshit this year, hearing from all of you was not. Thank you!! Really, you all make everything bearable, and I’m so lucky to know all of you.

We’d initially planned to head to the cabin today (Sunday), and stay through Thanksgiving and the following week. As part of this latest liver number situation, I’m now having a liver biopsy at Mayo on Tuesday (my fourth), to see if that can shed light on what caused the big bump in my bloodwork.

I am so excited about the biopsy. A normal person might look forward to going to see a movie in a movie theater: buying the popcorn, all the movie theater smells and snacks and sitting in the dark. I look forward to minor surgeries. The machine of them – all of the different medical people checking in prior to going into the operating room. I love getting wheeled through the halls, looking up at the lights and the masked faces. Rolling into the operating room, so cold, with all the busy people setting up, going over the plan. Trying to see how long I can keep chatting before the blissful haze takes over, and then I have a nice little break. Then I wake up and have graham crackers. I really love it all.

Which is weird, but I guess better than being freaked out by the whole thing.

I’ve been told (as of today) to start pulling back on my oral steroid, so this past day was my last at “peak steroid.” Which, I can say, is not awesome. I’m very fuzzy, puffy, and heavy. Everything tastes like tin. My eyes aren’t able to focus, but I can work on the computer if I make the print big. All of my joints feel like they could give way at any moment. Going up the stairs takes thought and quite a bit of effort. Bob had to push me in the wheelchair at Mayo these last days of infusions. I am the Oz scarecrow, listing about. Steroids are magical and awful. Bloodwork after the first round of IV steroids shows progress! Time will tell the next steps.

After the election.

How to talk about the last couple weeks? We had a wonderful, long overdue trip to the Bay area, and I felt physically great throughout. Felt cosmically good on election day. As we parked for an early (5 pm Pacific time) dinner, our friend flashed the Bitcoin price at me—it was skyrocketing. He looked somber. Not knowing what it meant, my friend said, “Trump.” But it was still early. Nothing had been counted. We made our table a phone-free zone and enjoyed the last meal in a free country.

Our friends had a work obligation to taste different flavors of a fancy ice cream brand, so we’d picked up nine pints of ice cream earlier that day. As the night wore on, nine pints of ice cream seemed as good as any way to manage the situation.

I didn’t sleep much that night, jacked up on sugar and horror and disgust and consumed with trying to formulate the most scathing combination of pejoratives to describe Trump voters.

My early ideas were inelegant: “What the fuck, you stupid, dumb fucks???!!!?!?!?!”

Trying to understand data gradually, gently, only leads to more questions. Trump supporters have overwhelmingly voted against the best interests of the rest of society: women, children, immigrants, everyone but rich, white men…and for that, I’ll never not think of them as pathologically selfish, horrible people – also too ignorant to understand that they have fucked over themselves in the process.

A big part of my post-election despair was just how many of them are out there. Like 50/50 voted for Trump. But that’s not true! More people didn’t vote than voted for either Trump or Harris. 89,278,948 people who could vote, didn’t (I have special words for them, but at least they didn’t make a conscious effort to vote for a sociopath). 76,701,827 people chose the sociopath. 74,150,117 chose Harris/Walz. This is important: more than 2 out of 3 people you see on the street did NOT vote for Trump.

This makes my plan to punch every Trump supporter in the mouth much more manageable.

We’ve all identified the known Trump supporters in our lives. We’ve tracked that shit all along, becoming more and more incredulous as Trump’s promises and actions became more and more demonic.

Now we get to watch Trump fill the clown car of ineptitude that might be his cabinet. A TV star Pseudo Dr. A FOX talk show host. A guy who hasn’t washed his hands in ten years because he doesn’t believe in germs. Someone with a worm in his brain who doesn’t believe in vaccines. The richest man in the world, who also happens to be Putin’s good buddy. A nutball who shot her dog. The hits keep coming. What the fuck. It’s apocalyptically hilarious.

On those I know to be Trump supporters, I’ve moved beyond rage to contain and distance; they are the swerving car on the freeway. Give it wide berth, and move away as quickly as possible. Do not engage. It is a lost cause.

I’m a floating blue ball, with a blue safety force field all around me. I avoid the orange balls; they’re prickly and suck away energy. I know so many other blue balls! Like (most of) you! We stick together and can form a great, big blue raft. And that’s what we’ll do. We’ll get through it. And we’ll use our individual and collective power to help those who will be horribly fucked in ways we can’t even begin to predict.

Bob and I have stopped watching the news. Our nightly routine used to be eating dinner while watching Chris Hayes on MSNBC, slightly behind air time so we can fast forward over commercials. We now watch Antiques Roadshow or Shark Tank over dinner, because Bob draws the line at watching veterinarian shows (my choice) while eating. I’ve turned off political notifications on my New York Times app. I’m subscribed to Heather Cox Richardson’s Letters from an American newsletter on Substack. She’s an academic historian who reports the daily updates in a straightforward manner, and often ties them back to similar occurrences in history.

In other news, there is zero nutritional value in Kellogg’s Corn Pops cereal, until you add milk, and then it has the nutritional value of milk. And if anyone could help me remember why I ordered two pounds of black sesame seeds, that would be awesome. Yesterday was a terrible day after weeks of good days: pain, moments of considering calling an ambulance, couldn’t settle on which catastrophic malady was about to kill me, then feeling fine, did a bunch of work, had a terrible headache, periodic vomiting, more ambulance consideration, had to cancel out-of-house appointments, ended day feeling totally fine. And today was a great day. I think this is pretty much the way it’s going to be, for all of us, going forward. We’re going to have really terrible days. But that’s okay, because we also have a big blue raft.

Election Day

All of the feelings you’re feeling today (Election Day) is what it’s like to have cancer.

Wild swings between dread and doom, and confidence that everything will work out (even if the path is bumpy), and all the things in between, while succumbing to glancing at polls (don’t do it) and also semi-successfully employing your stress-reduction strategies.

Had scans at Mayo last week. There is slight progression (some lesions have grown, a few new ones cropped up), so my oncologist is pulling me off the trial and pivoting to a different treatment, in the ongoing game of whack-a-mole. I’ve been totally off any sort of treatment the past three weeks as we’ve been addressing liver inflammation caused by a reaction to the immunotherapy. I’m still on a high dose of steroids as my liver numbers jump around, but at least aren’t trending up. And I’ve started a new cancer treatment as of Friday.

We’re kind of working down the list of options: started with high expectations for magical immunotherapy and targeted therapy (a drug that is somehow different from “chemo”) infusion combo…which ultimately didn’t work. It might have slowed progression, but there’s no baseline for the rate of progression, so who knows. Then we shifted to the trial, which was the continuation of the immunotherapy infusion I’d been taking, but combined with an oral targeted therapy drug. That oral drug is one of two that are similar and have been the go-to treatment for a while. Now we’ve shifted to just the other oral drug.

So this is the third treatment, and at the moment, the last in the arsenal. I’m weirdly sanguine about it all. We’re playing the long game, and there’s no way to predict how my body will react to any of it. This third line might be what works to shrink the cancer and put me in an indefinite holding pattern. Also, my oncologist is running two different, brand new treatment trials that are in their final stages of approval and funding, which will open up early next year.

I realized that we’re now exactly one year into this metastatic diagnosis. What were tiny specks of cancer one year ago are now just a few more nominally less tiny specks. I don’t feel any closer to death now than I did a year ago.

There’s a mindless iPhone game I play where you advance until you run out of moves. The game gives you the option to reshuffle the tiles and keep going, or stop. I always choose to keep going. I think I have a way to go until Game Over.

Meanwhile, having no pain. Feeling good. Jangly from the steroids, but I’m used to there being some bullshit as just my normal life now. We’re in California seeing friends. Remember the night after I got my flu shot and all of my nerves short circuited in blinding pain and I thought I’d never leave the house again? The next day I got some morphine and said “Let’s go to California!” Bought those tickets, and haven’t had pain since (and haven’t needed to take more morphine since, either). Gabapentin has been keeping it all under control. I was worried that the toxicity team wouldn’t approve my trip (I’m still being closely monitored for the liver inflammation) but they agreed that if I’d get labs done while I’m here this week, I could go.

Hang in there today (and the future days). May good win over evil.

Pain and possibility

Went back to Mayo yesterday to meet with the toxicity team: my liver bloodwork is off, and the assumption is that the immunotherapy treatment is causing inflammation in my liver. So we’ve paused treatment, and I’m now on prednisone to reduce that inflammation. My toxicity team (like my oncology team and palliative care team) is terrific. All of my teams live on the same floor at Mayo and actually communicate with each other. Common sense yet revolutionary: coordination of care.

I’m not noticing any symptoms of the liver inflammation. I feel great, had plenty of energy for navigating the Mayo campus. The toxicity team tweaked some of my medication to better protect me from and prevent some unwanted steroid side effects (as steroids can reduce my immunity, irritate my stomach, etc.). I have narcotics for occasional nerve pain; I needed to shift to something that doesn’t have acetaminophen in it, so they prescribed morphine. (The doctor talked about my beloved Vicodin as an old and somewhat ineffective solution for my nerve pain – it actually doesn’t work well on this. Bob pointed out they’re switching me to “modern” morphine…)

In talking through the plan, it was clear that this is a bump in the road, not a derailment of my treatment – it’s not uncommon for someone to be on immunotherapy medication and then all of a sudden have an issue with it. I’ll just keep doing weekly labs, weekly video appointments with the toxicity team, and we’re already reducing the dose of the prednisone. It’s assumed that we’ll be able to keep decreasing that dose until we get to a point when we can restart treatment. Maybe in about a month?

I felt good throughout all of this – physically good, very comfortable with the plan, heartened that this is all just part of the process. Mayo was hosting a walk-in flu shot clinic, so we decided to take advantage of that while we were there. No need for a Covid shot quite yet, as we had Covid in early September. We also celebrated with chocolates from the Abdullah stand (whoops, that should be Abdallah, totally different) in the underground mall that connects the Mayo campus. Bagels from Bruegger’s for the drive back to Minneapolis. Oh, I remembered I’ve been craving a cinnamon roll, and look, there’s a Cinnabon right there.

I had a little nap when we got home. Continued to feel terrific through dinner and evening TV time. Everything blew up at bedtime. Nerve pain clamped onto my shoulder. The myriad steroid side effects, confirmed that afternoon, all came out to play: heart palpitations. The feeling that there’s a light film over my eyes. Jangly nerves. Munchies. Irritability. I couldn’t sit still to try to sleep, so I packed into the recovery lair with the TV. I hadn’t picked up the morphine, so I was working, unsuccessfully, with Ibuprofen and Vicodin.

So I didn’t sleep. The pain and palpitations were nominally better if I sat and sort of rocked back and forth on the edge of the bed while watching veterinarian shows. I tried a heating pad on my shoulder. I tried ice packs. I read that heart palpitations can be caused by low electrolytes, so I mixed electrolyte powder into water and drank all of it.

I had plenty of time to think about mistakes I made, and other factors leading to me wandering the house like a lumpy ghost trying to find some relief. I assumed I might have some elevated response to the flu shot – but couldn’t have predicted it would be like throwing gasoline on a fire. Wonder if the carb and sugar car rave home from Mayo had anything to do with anything – probably not, right? (Probably.)

I was finally able to sleep for about three hours after a night of absolute bullshit. And the deep realization that pain eliminates possibility. Just that afternoon, Bob and I were planning trips; all night long, I was resigned to never leaving the house again. I could not see a path through this. I completely lost any possibility for a recovery. Hope, gone.

All for amorphous pain that has no definite source. There’s no axe wound, no broken bone, no tumor consuming my organs. Maybe a tiny lesion that happens to ignite a nerve that then sets up a chain reaction. I can sometimes distract myself from it; when I realize the pain has momentarily disappeared, I frantically try to think of something new and not pain related, because if I recognize its absence, the pain comes roaring back. I get frustrated that I’m unable to find the mental switch to reliably turn it off. In the moment I have little will to keep trying to figure it out. Pain is all consuming.

Today, I worked (working is an engaging distraction), I fired off a couple fairly hysterical portal messages to my toxicity and palliative care teams, and Bob retrieved my morphine prescription. I had a planned energy healing session. Long story short, I’m back, baby! Was able to sleep for a couple hours, and I’m back in the land of hope and possibility. And morphine. I am nowhere near needing strong drugs on a regular basis -- only to put out periodic fires when a chain reaction of ridiculousness starts. But they're sure great when I need them. I'll also keep working with palliative care on things like my Gabapentin dose and other strategies to prevent the fires in the first place.

The only constant is change.

The only constant is change. I had appointments at Mayo on Friday. Just labs, a visit with my oncology team, and an immunotherapy infusion. I’ve been gradually perking up over the last couple weeks after a somewhat rough patch. “Rough” is pretty relative – I wasn’t laid up, I was still working and functioning, etc., but feeling pretty draggy. I think I definitely underestimated the Covid recovery time, for one. And we hadn’t dialed in my Gabapentin dose, which has subsequently pretty much stopped my hysterical nerve pain. I also skipped a few weeks of acupuncture and energy healing, due to schedules and travel (mine and theirs).

 I continue to be fascinated about the effect these alternative treatments have on me. I pretty much feel nothing during or right after an acupuncture session. I’ll come out of an energy healing feeling calm, but not really noticing any physical change. I could easily assume these treatments are doing nothing – but then, if I pay attention, later I’ll notice both subtle and profound changes in my mood and how I’m feeling. My energy improves, a nagging pain goes away. The treatment in both cases is very straightforward – what symptoms are presenting today? Then we focus on that, by clearing blockages, sending energy, or placing needles (which could also be clearing blockages and sending energy). Both of these practitioners treat my full recovery as a fait accompli, tell me not to worry. It’s very positive and comforting.

 Anyway, all this to say that for any number of reasons, I’ve been back to feeling quite good these last few days. On Friday, I brought no complaints for my oncology team. I asked how many people were on my trial at Mayo – I was surprised to learn I’m the only one left, as everyone else had to drop out because they couldn’t get their blood pressure or diarrhea under control. There are other participants around the country, but I’m currently the only one at Mayo. This news made me feel like a badass.

 Then the oncologist came in (not my lead doctor, but someone on his team) and told me that my liver bloodwork was concerning, and starting immediately, I was to stop all of my cancer treatment and start taking prednisone to try to get those numbers under control. I wouldn’t be having an infusion that day, and I was to stop with the oral drugs. I need to have bloodwork drawn every other day (can happen in Mpls) and report back at Mayo on Wednesday to meet with their toxicity team. The assumption is that some part of my treatment is causing liver inflammation, and that’s bad.

 I’m really quite surprised that this news isn’t stressing me out. I have questions, sure, like what does this mean for starting treatment up again. (I did confirm that this slight detour won’t disqualify me from continuing in my trial, if we get the numbers under control.) I’ve been thinking through anything that could have all of a sudden tipped the scales after months on these drugs. The numbers started trending up prior to my Covid diagnosis, so we can’t blame that. They said Gabapentin wouldn’t do it. It’s a mystery.

I’m rolling with it. I’m flushed and a little jittery from the steroids. My schedule has once again been completely destroyed, but luckily, we’re flexible. I’m hoping for the next couple weeks or as long as I’m off the cancer drugs that some of my drug side effects will improve, and maybe I can enjoy some good Thai food and sparkling water without intolerable mouth pain. That would be nice.

On the Road to Farm Aid...

A very irritated mother leaving the Saratoga Springs Emergent Care at midnight, with a cute, blonde girl in pink pajamas, “It wasn’t nice of you to spit the medicine on the lady!” The little girl was probably 4-ish, and she looked perky and fresh, even in the middle of the night. “We waited for SIX HOURS, and you needed that medicine to feel better!”

Unfortunately, we didn’t get to hear the child’s reasoning for spitting medicine on the nurse; she started just as the exit door slid closed behind them.

We’d arrived in Saratoga Springs, NY for the Farm Aid concert and related pre-events on Wednesday afternoon, and since I wasn’t feeling great, hadn’t left the hotel room. It was now midnight on Thursday night (technically Friday morning). Once again, I took narcotics (not even a lot; one tablet per day, max) for my roving nerve pain, and despite all the Senna and Miralax and prunes, nothing was happening. Bob would perform periodic exams, consisting of putting his ear on my belly to listen for signs of life, and when there were none, we decided it was time to get actual medical assistance.

The lack of people in the waiting area gave me hope that this could go quickly; I was wrong. When we were finally seen by a doctor, and I said the issue was constipation, he gloved up and told me to turn on my side. “What?” He explained that he was going to do a manual disimpaction. I tried to tell him that there was nothing on deck; he might need some tongs. Or maybe a drain snake. He was irritated. “Do you want me to help you, or not?” Yeah, sure. If he wanted to do a digital spelunking mission into my ass, be my guest. He quickly retreated; nothing there. Oh, no shit? (Literally.)

What followed was 1.5 liters of soapy water pumped into my bowels, and all in all, it wasn’t terrible and it did solve the problem. Six hours after we arrived, we headed back to the hotel. I was recovered and feeling good for the concert on Saturday, working in the media tent connecting media to farmers and organizing farmers to appear on the live SiriusXM radio show between sets. I got to see many, many old friends, which was lovely.

I never reported on data from my last Mayo visit; there were no scans, so the only thing I really get are labs (all of my bloodwork continues to be great), including my AFP, or liver cancer tumor marker. This is the one that can make me panic as it goes up seemingly stratospherically, but my doctors downplay the importance, saying other factors, including the actual scans and generally how I’m feeling, are what they consider. Well, my tumor marker dropped from 4,311 in August to 2,876 in September. So we’ve been taking this as a good sign – at least until a new test comes back on my next visit, which is Friday – and then we’ll either continue to celebrate or we’ll do our best to disregard. These numbers are hilarious to me – normal is less than 9. *Nine*. Before I had liver surgery it was just over 100, and I was wondering if that was some sort of a record. Little did I know…

The Princess and the Pea

The Princess and the Pea

It’s been a rough couple weeks, but everything is fine. Every time I get a new pain or stitch or ache, I assume it’s cancer. I mean, logically, what else could it be? My body is experimenting with tantrums and I wish it would find another hobby. We’ve done some normal things like normal people – went to the Fair, have done some socializing, we went to Florida to have a memorial for my brother-in-law Mike. Mixed in there has been two evenings in the ER, and moments believing we’ve turned the corner and started the beginning of the end. And then waking up the next day feeling 100% fine.

First ER trip was for insane pain in my side (what’s been there to varying degrees from the beginning), running up to my shoulder, with the added bonus of complimentary pain on the other shoulder, seemingly stemming from a pinched nerve in my neck. I got some IV tramadol and Dilaudid (nectar of the gods) and a CT scan to see if my abdominal organs had indeed fused together in a giant cancerous mass, which is what it felt like. Six hours after we arrived, we went home with some oral Dilaudid (not nearly as good as IV) and the knowledge that there was nothing unusual on my scans. Great.

Two days later was my regular scan day at Mayo. Some of my lesions in my peritoneum have grown, some shrunk, and there are no new lesions. We’re taking this as great news. Really good. My last treatment was unable to stop new lesions, so we’re on the right track. We talked about the crazy pain I’m having, and identified the lesion that is likely causing the irritation in my right side. It’s located in a spot that activates a nerve that runs up into my right shoulder. All of the misery is being caused by something that is literally the size of a pea. It’s tiny. It’s also not close to any vital organs. What the hell. The pain in my left shoulder has nothing to do with cancer, probably caused by sleeping on my arm and pinching something in my neck. I don’t understand why my body (or my mind?) is enjoying a massive overreaction to what should be minor irritants at best. But they're enough to keep me up all night, pacing, shifting to try different to different positions, taking a hot shower at 4 am. Trying to avoid narcotics.

But I hate pain, and I love narcotics.

Everything is terrific, until a few days later, and I can’t recall the last time I shit. I start to feel a bit draggy, tired. Bob, who felt like he was coming down with a cold, suggested Covid tests. Fine, whatever…and we’re positive. Pain continues, not related to Covid, barely related to cancer. Constipation continues, related to narcotics, and not related to Covid. Assume I need to get Paxlovid, because of the Covid. There’s new and extreme chest pain, related to, obviously, heart attack. So back to the ER. I assume my intake report of “cancer, Covid, heart attack” will get me seen quickly. As I’m checking in, Bob decides he wants to check in, too, separately, for his Paxlovid. Triage didn’t deem me in need of fast service. I eventually had bloodwork done, got an EKG (normal), and then a chest x-ray to see if the heart attack was really a covid pneumonia situation. I got them to add on a neck x-ray while they were at it to see if there is some obvious situation causing my arm to tingle. Did I mention more IV tramadol and Dilaudid? X-rays showed nothing of note. The ER docs convinced us that Paxlovid isn’t necessarily the way to go, so we skipped that. The ER doc prescribed Gabapentin for the crazy nerve pain (which I call “nerve hysteria”), Valium for its muscle relaxing properties, and a new laxative. Six hours after we arrived, we headed home.

I woke up Friday feeling like I’d been run over by the Covid truck. I crawled into the Recovery Lair to spend the most glorious Minnesota weekend in a dark room watching Below Deck. I called my mom, who can’t see the caller ID because of her macular degeneration, and my voice was so bad that she really couldn’t figure out who I was for the longest time. I was quite sick only on that first day, then mellowed into a light flu/bad cold. The Gabapentin is working on my nerve pain! I love Valium!

But my troubles weren’t over. I maybe over did it with the laxatives. I also possibly ate most of a bag of prunes while mindlessly watching Below Deck (it’s super trashy and I love it so much but can’t justify watching it unless I’m sick). Oh, I also roasted up a bunch of beautiful red beets from our garden and ate those. (Bob hates beets, so all for me!)

Okay, I don’t want to go into graphic detail, but the laxatives, prunes and beets combo caused an explosive reaction that looked like catastrophic internal hemorrhaging. That has nothing to do with Covid. And only really connected to cancer by the ridiculous pea-size lesion in my side.

I had a lovely distraction provided by kitty Oslo, who produced a live mouse to torment in the hall where I could watch from the lair. I hope she brought it up from the basement, because I can’t deal with mice living on the second floor. I had to turn up the volume on the TV to drown out the squeaking. Once again, Bob refused to get involved, as the situation was being handled by the cat. "We don’t have a mouse problem, we have a mouse solution." -- Bob Weidman. Everything’s fine. Just a lot of freaking the fuck out over nothing.

August 12, 2024

No news is good news! Everything is humming along smoothly. The energy healing has removed my death panic, I’m pretty used to the side effects from the drugs, and I’m basically feeling great.

My healing practitioner (they guy curing my cancer from the Bay area in our weekly phone calls) talks about the difference between being afraid to die, and wanting to live. I have no fear of death – I’ve come close, and I can assure you, it’s not complicated or traumatic (at least in my case, heavily medicated after my brain aneurysm surgery). I’ve been thinking about that lately – I never knew, when I was going through it, how terrible my situation was and how a good outcome, let alone the perfect outcome I experienced, was unlikely.

Bob told me about a podcast he listens to (Sean Carroll’s Mindscape: Science, Society, Philosophy, Culture, Arts, and Ideas), and specifically about episode 279: Ellen Langer on Mindfulness and the Body. As an energy healing skeptic, I was impressed that Bob connected the dots. Also, Bob is much more inclined to consider something if a famous physicist is giving it space on his podcast. There are many interesting concepts in this episode with Dr. Langer, including re-defining what’s “possible.” Assumptions we have may not be absolute: in her example, we all know that 1 + 1 = 2, right? But what if you have one pile of sand, plus another pile of sand; put together, you still have one pile of sand. In the case of my aneurysm, no one ever told me how dire my situation was, so I just went about healing, with the assumption that I would get better. Did that ultimately affect my outcome?

And now, if I believe that this cancer will not be my demise, could that be putting my mind and body in a position to be most receptive to healing?

I can tell you that being entirely lucid throughout the cancer diagnoses has not worked in my favor. It did not stop me from asking Dr. Google how long I’ll live. Or incessantly asking my doctors the same question. My doctors always hedge on an answer. Because ultimately, they don’t know. They have no idea. The energy healing sessions have somehow helped me cross over from a stance of being thoroughly fucked to living with the possibility that this is just another overcome-able obstacle.

It has not been an easy transition to open up to this hope, this possibility. (Words I'd also use to describe the Harris/Walz campaign.) Some people might find this assurance in religion, but since I didn’t get the Jesus gene, I needed a different approach. My Minneapolis oncologist, tired of me trying to trick her into giving me a death timeline, finally said, “How do you feel, right now?” Well, other than this cloud of impending doom, I’m 100% fine. She suggested that I should perhaps just keep doing that. I have moved from a response of “EASY FOR YOU TO SAY!” to, “Sure, why not?” I can tell you my day-to-day life is about a million times better without the shroud of death. So much so that I’ve just been living it, with nothing notable to write updates about.

My Chinese medicine doctor treats the symptoms that are in front of him, at that moment. He suggests ways I can reduce stress and increase energy: “hot water soak feet”, spend at least a little time in the sun each day, and if I can’t manage to go to bed early, that can be balanced by afternoon naps. The brilliant chef who cooks food for us was out of town for a couple weeks; that was borderline disastrous, as we’ve lost all ability to feed ourselves. I ate a lot of Cheerios. That’s ok, because I like Cheerios. When the chef returned, Bob remarked how incredibly good he felt only eating delicious, healthy food again (that includes vegetables). We had a Mayo infusion trip shortly after we were back to clean eating, and Bob inexplicably picked up five donuts and a Red Bull at the Rochester gas station as we were arriving in town. You know what doesn’t make someone feel good?

Don’t try to think too far into the future; the future is uncertain even without a cancer diagnosis. And definitely don’t let worrying about the future steal time away from a really solid, productive, interesting and feeling good present.

If you’re interested in learning more about the energy healing situation, let me know. There’s another workshop coming up with the founder – if you’re into it, I recommend checking it out.

Also, the aurora were astounding last night. We were out at the end of our dock, listing to loons call all around us, catching glimpses of the Perseids. Pretty great.

New scan results

tl;dr new treatment apparently working, lesions shrinking, Bob best husband.

Over the weekend, we were driving to get lunch in a neighborhood with heavy street construction. Orange barrels everywhere, restricted traffic lanes, etc. Bob was making a hard turn on to an angled street, navigating around construction barrels. There was a pedestrian just stepping into the crosswalk (which was somewhat protected because of the barrels); if we were in New York, it would be an entirely unremarkable situation of a car in the crosswalk at the same time as a pedestrian, but not threatening to run the person over.

But we weren’t in Manhattan, we were in Edina. The woman never had to break stride to accommodate our car. As she passed behind us, she slammed the back window with her hand. Bob immediately said, “That’s bullshit,” put the car in reverse, and started backing up. “What are you doing??” I asked. “I’m going to hit her,” Bob said. I started yelping “NO! NO! NO! NO! NO!” before I realized he was kidding about running over the woman, and was moving to allow a car to pull out of a parking space. Bob launching into an altercation would have been extremely off brand for him, but emotions are a bit frazzled around here, so who knows what’s possible.

(Yes, I know, the pedestrian was in the right. Totally. But it wasn’t a terrible error on Bob’s part, either; she was still on the sidewalk when he initiated the turn. Because of the construction, we were moving slowly and she had time to catch up to smack the car.)

Last Wednesday, I had my first scans at Mayo since starting this new treatment regime. Treatment plan #1 failed to prevent new lesions from forming. We learned that with Treatment plan #2, I have no new lesions, and known lesions are shrinking! This is amazing news. I was looking for more emotion from my oncologist, but he’s only concerned about whether we’re on the right track and should carry on with this plan. Yep, forge ahead!

He’s happy with my comprehensive treatment plan of Western medicine (Mayo), Eastern medicine (acupuncture), and what he’s categorized as mental health support (the energy healing). Plus the amazing chef-prepared organic food that arrives at our house weekly. I really can’t say enough superlatives about the impact this is having; I just don’t feel like eating a lot of the time – the cancer drugs make my mouth and throat extremely sensitive, eating hurts, and nothing really sounds good. I can’t imagine trying to think through and make decisions about what to make/order on delivery. Now, Bob can pull something out of the fridge, heat it up and put it in front of me, and I’ll eat it – and it’s all excellent, nourishing food that our chef is constantly revising, based on what I can tolerate (no spicy food anymore). She thinks about things that wouldn’t occur to me, like balancing different kinds of sodium across the dishes. This week almost all of the ingredients came from the St. Paul farmers’ market. She goes light on wheat flour, cane sugar, and dairy; when I’m not feeling great (or even when I am), these are my favorite food groups, but because I’ve got tasty food with healthy substitutions in my refrigerator, I’m not existing on a diet of pastries and ice cream. She’s a wizard at making up or adapting recipes to hit nutrition goals, without making us feel like we’re missing out on the good stuff.

As my Mayo oncologist says, he wishes all of his patients were able to have all the supplementary treatments and support I have. I know I’m very, very lucky to have the combination of financial resources (money), a network that can hook me up with people and practitioners (connections/access), and curiosity and tenacity (self-advocation). Being a bossy, white, insured, connected, upper middle class, educated woman living primarily in a progressive, urban area close to one of the premier medical institutions in the world all works in my favor. Not to mention having a devoted husband who makes all of this a billion times easier. I know my experience is, unfortunately, extremely rare. Unheard of. Luck plays a big part, too – I’ve landed with the right doctors pretty much my whole life. People seeking care in some of the same health systems have had very different experiences from mine. I don’t know how to understand my luck vs. theirs.

We met with the Palliative Care team at Mayo last week. I had always associated palliative care with end of life care, and was a little freaked out when it was suggested I meet with them. Turns out they help with anyone navigating serious illness. Very interesting to see the differences between the Mayo’s Integrated Health work and their Palliative Care department. There are some points of overlap; and overall, both departments are taking some alternative treatments/supports seriously. They push things like mindful meditation, stress and anxiety management, exercise and nutrition more than supplements or anything ingested that would have unknown/unstudied effects on the drugs they’re prescribing. Understandable. I still occasionally use things my team has not universally “approved”: mouth spray, THC seltzers. I am completely honest with my whole team about what I’m doing, regardless of whether I have their approval. Maybe what we learn from my experience can be useful for someone else. All of these “alternative” or complimentary treatments and supports were basically disregarded and dismissed from Western health care practices only a little while ago. I was amazed to learn that some of the Mayo palliative care nurses are performing Reiki (a form of energy healing; different from what I do, but in the same neighborhood) on patients who want it – we’re getting closer to more widespread acceptance and validation of alternative healing methods by Western medicine.

To be clear, though, I am in no way eschewing Western medicine for alternative medicine. I’m finding a balance that feels right for me, helps me feel pretty good physically, and quiets the screaming in my head. And it seems to be working.

Update June 5, 2024

“Hot water, soak feet?” My Chinese medicine doctor asks me this every time I see him. As in, have I done it, every evening before bed as prescribed. I admit I haven’t, and he looks a bit disgusted that I’m not able to follow through on basic instructions. “Very important!” he says.

It’s all important. The daily regime of life becomes a bit more complicated with cancer. I’m supposed to take my targeted therapy capsules at exactly the same time every night; I’ll take the win if it’s within an hour. I’m supposed to take my blood pressure a couple times a day, at the same times as the previous day. That has never actually happened; I take it whenever I think to do it, and it’s entirely randomized day by day. I diligently record results in a handy iPhone app – I’m good at that part. Friday marked 22 years since my brain aneurysm hemorrhage; managing blood pressure is particularly relevant for me. As I continued to take the new cancer drug, I spent time panicking that I would 1. stroke out and 2. be expelled from the study for uncontrolled blood pressure, which must stay less than 150/100, and even with increased blood pressure medication, I was not reaching that goal.

My Mayo oncologist ultimately reduced the dose of my Lenvima oral cancer medication. I worried that the cancer treatment would be less effective on a lower dose – no; turns out no one can manage on the high dose, but they start everyone there “because that’s the way the study is written.” [Edited when I noticed I hadn't dropped any f-bombs in this post, and this seems like a good place for one. What the fuck??]

My team was vaguely sympathetic about my side effects: body aches, sore mouth and throat (pretty much all mucus membranes: “tampon made of twigs” didn’t get the reaction it should have, and in fact resulted in my oncologist deducting that all of my side effects are hormonal, and not related to the Lenvima -- which I don’t believe). They tried to make me feel better by telling me most people have screaming diarrhea, too. Dodged that bullet (so far). I tried to confirm with my Dr. Lionel that it was okay for me to have low-dose THC seltzers. He asked why I drink them; I said to relax, as I don’t drink alcohol*. [*Edited to add "any more," though I was never a big drinker.] He asked what else I take to relax and I said Vicodin, to which he threw up his hands and said “What is this world coming to that people take Vicodin to RELAX,” which made me sad because it’s obvious that Dr. Lionel has never experienced Vicodin.

I still am not feeling any effects of the cancer – just the side effects from the drugs. The biggest issue right now is eating. My mouth and throat are sore to the point that I avoid eating, because it hurts. It’s no surprise when I totally and completely hit a wall, energy entirely depleted. That’s what we’re working on this week. We’re at the cabin, so on our own for food production. I have frozen smoothies I doctor up with protein powder. I like cereals like Malt-o-Meal, oatmeal and muesli. I’m happy to eat chia pudding. I need to focus on getting in more protein and vegetable matter. I have some mouth sprays that help the discomfort a little; the most effective is something chefs visiting the Indigenous Food Lab brought. It’s chilcuague root extract that they made. I showed it to Dr. Lionel, who was incredulous about the home-printed label stating “'Antifungal, antibacterial, antiviral, digestion, toothaches, and more.' And more?? And more?? What else could there be??” Apparently he thinks it’s functionally impossible for one essence to have all of these properties – and more! It tastes awful when you spray it into your mouth, and there are moments where it feels like something really bad is happening and it might be time to go to the hospital. But then the drooling stops and the numbness takes over and it’s really quite pleasant. How bad can it be. It’s not like I’m drinking gallons of the stuff.

Dr. Lionel is not a fan of me ingesting potions someone made in their basement out of plants. Whatever. It’s one of the risks I’m willing to take. Along with hot water, soak feet (I’m on a 3-day-in-a-row streak!). All of my health advisors have told me to not be stressed out, not think about the cancer, and since I feel fine now – I should just keep feeling fine and carry on. Weirdly, this is starting to sink in. Hot water soak feet isn’t going to cure my cancer, but it might improve my relaxation and my mood (it’s supposed to reduce anxiety). It’s clear that Dr. Lionel’s (extensive) studies haven’t taught him EVERYTHING. Like the wonders of Vicodin, or basic principles of Chinese medicine, chakras, energy healing, or the efficacy of potions made in basements.

I admit it sounds farfetched to say I’m getting beneficial results when a Chinese guy decides where to poke me with needles based on two numbers I give him at the beginning of the session, or I talk to a man in the Bay Area once a week, and he’s curing my cancer over the phone. The element of hocus pocus voodoo magic is weirdly comforting. It keeps me from sinking into despair. The news is two steps forward, one step back. After the first three weeks of this new treatment, my cancer tumor marker blood test dropped significantly. Three weeks later, that test showed higher than ever. My doctor celebrated the drop, and downplayed the increase. Which is it? Can’t say. No one has this shit dialed in. So I continue to genuflect to my new rituals while also trying not to dwell on the fact any of it is happening. Today? Today I feel basically great. The birds at the cabin are amazing; Baltimore orioles, rose-breasted grosbeaks, rafts of white pelicans and cormorants on the lake (undoubtedly scooping up all of the stocked baby walleyes), wood ducks in the wood duck houses, tree swallows in the blue bird houses. Osprey on the nest platform, but maybe not in the nest. Sandhill cranes in the field stubble – haven’t seen the colts yet. I’m actually pretty great.

Dispatch from the cabin.

We’ve been at the cabin since Friday evening. Friday was supposed to be a big day at Mayo, starting the drug study treatment. I needed to have the prescription drug part of the plan in hand, shipped to my house, so I could start the pill the same day as the infusion. Thursday afternoon we found out there was miscommunication in the ménage à trois of the specialty pharmacy, my insurance, and my Mayo doctor, regarding insufficient pre-authorization. It looked like it would take days to resolve. We had to cancel all of the next day’s Mayo appointments, and push to the next week. Basically, the moment that decision was made, whatever had been gumming the works cleared out and the drug would be arriving on time – but by then my slots had been given to other patients, so we hopped in the car and headed to the cabin.

So many changes here, just in the past two weeks! There were endless pairs of trumpeter swans communing along the lakeshore the last time we were here, spending most of their time in the water feeding, big fluffy swan butts in the air. Swanbergs in the mist. They are surprisingly loud, chortling well into the night. The swans are now gone, nesting somewhere, but the loons have arrived. The peepers are peeping in the slough, and the wood ducks are awkwardly careening around, scoping nesting sites. Evolution has not given them grace.

As we headed out of Minneapolis on Friday, the place where we picked up lunch was selling frozen pizza dough balls. We have a little propane pizza oven at the cabin, and I took it apart to make sure no one was living in it before we fired it up. On a roll, I also opened the gas grill to find a very startled mouse family staring back at me. The babies were no longer pink, but just barely. We decided to close the lid and hope that mother mouse would decide to relocate her family, so we can catch them in traps later in their lives. Really wanted to avoid creating a mouse inferno in our Weber.

Ran into Larry’s Market in Battle Lake looking for fresh mozzarella (nope!) or pre-shredded, packaged mozzarella (yes!) for our mouseless pizzas. Coming back up our ½ mile long driveway, I drove by something on the ground that made me stop, back up, and crunch the car into a tree. I was actually a bit stuck there for a moment, thoroughly hung up, but I managed to get back to the cabin. Where I was unable to open the driver’s side door. I called Bob from behind the wheel, and just explained “I broke the car.”

Bob came outside, plucked a chunk of wood out of the doorframe, and opened my door. Whew, that still works. He then surveyed the damage and tried to guess what had happened. “Did you spin out?” No. He was perplexed about the series of large dents all along the side of the car, while the headlights, tail lights, and both bumpers were totally fine. “Did a bear run out of the woods?” No. But you’re sort of getting closer…

We’ve never seen a bear here at the cabin, but there are periodic sightings. Bears around here are a bit mythical, like Big Foot. The latest grainy photo was from last week and we calculated it to be less than 2 or 3 miles from us, so practically right here. We always keep our eyes peeled for wildlife, but that turns out to be mostly deer, turkeys, a pheasant, a bald eagle, or a skunk (live skunk sightings are quite rare!). We always call them out when we see them, even the deer, and we’re lousy with deer. We’ll point out Canada geese, for god’s sake. And there are so fucking many geese here, friends made bumper stickers in high school saying “Fergus Falls: Old people, police, geese” and that truly summed it up.

A bear might actually cause me to crash the car in excitement. I guess I can sort of blame this on a bear. Actually the failed promise of a bear…what I thought I saw along the driveway was bear poop. There were a couple black lumps that don’t fit the “normal” profile of shit I’d expect to see on the road. If I could identify bear scat (which I’ve never seen before), we would know the bear is really somewhere close.

Something like that was what was running through my mind as I threw the car into reverse, thought, “Oh, my neck no longer allows me to turn to see out the back of the car,” then, “Doesn’t matter, I have a back up camera” and hit the gas.

When diagramming the series of events for Bob still didn’t make him understand how I’d managed it, we actually drove back out to the scene of the accident and he tried to set up a reenactment. There’s a massive wound on the tree I hit, and there was, indeed, only one tree, so that gave my story some credibility. But he’s still puzzled. Later tonight he admitted that the only thing he could think of was that I kept turning the wheel and gunning it, so the car slammed sideways into the tree again and again, and I think I successfully convinced him that I wasn’t a total fucking idiot who would do that. But now that you mention it, how the fuck did it happen? I mean, it is impressive. I managed to separately dent each door and the back quarter panel, yet not damage the door handles or the gas cap. Also, turns out I ran over the possible bear shit but actually dirt clumps when I got the car off the tree, so Bob was never able to see what I saw, the very reasonable thing that set off the events that will include him spending money in a body shop.

April 7, 2024

Spent the last week dipping into despair, stressed about, you know, everything, but including which part of the drug trial study I’d get into. The untested combo of immunotherapy plus the “not terribly successful but has been our go-to for years” pill, or just the pill. Just the pill is the Plan B “standard of care” next option when I didn’t have a robust response to Plan A, immunotherapy + targeted therapy. Plan A was heralded by my Mayo oncologist as the path to durable response, and continuing to live life fully, yet unencumbered by cancer. In comparison, Plan B sounded more like “hopefully we can keep you alive for 14 rather than only 12 months.”

When Plan A failed, panic set in. Plan B doesn’t sound great. Note I continue to feel 100% fine, so rationally, it’s hard to see going from this to dead in 14 months, failing an attack of Terminal Hit By Bus.

Wouldn’t it be great if rational thought prevailed?

I kept myself from wishing too much that I’d get into the study, which basically combines some of Plan A with Plan B, a combo that is untested and possibly the cure. Manifesting my destiny is such a mind fuck. On the one hand, I need to think positive thoughts to make positive things happen, but on the other, if I think too positively, I’ll jinx it and it won’t happen. I realize how little I want all of this fabricated responsibility.

My restrained wishing while preparing for disappointment turned out to be the right balance: yesterday I found out that the randomizer selected me to be in the study. I have been given hope.

An aside on the randomizer: we enjoyed watching The Floor, the new game show hosted by Rob Lowe that makes heavy use of “the randomizer” to pick contestants on the show. The basic premise is that two contestants face off in a contest to see who identifies the most pictures correctly. In the bird category, I’m still mad about what the show claimed was a robin. It wasn’t a robin, like not even close to being a robin. Yes, it had some red on the breast, but was definitively not a robin. Irrationally, I blame Rob Lowe for this. Fucking idiot.

I had a session with a healer on Friday. A friend recommended this person. I confirmed with Bob; this friend is not a known wing nut. That’s the first hurdle: how crazy is the friend making the suggestion? I had a brief introductory call with the healer (though I don’t think he calls himself that, and he made it clear he doesn’t walk on a leash). He told me a bit about the premise, and how sessions work.

I excitedly passed this information on to Bob, who is generally NOT wired to believe in weird shit. “This is quantum mechanics. You believe in quantum mechanics!” I reminded Bob. It’s basically energy work, working the theorem that energy can be manipulated remotely through certain techniques, and can stop the spread or even cure cancer. It’s had success, I told Bob. In a study, this practitioner partnered with two other practitioners in other parts of the country, and the three of them cured some cancerous mice.

Bob spit out his coffee. Apologized, and tried to cover by saying “Cancerous Mice is a good name for a band.”

“At least this seems more plausible than Jesus.” I responded.

I’ve never been religious. From a surprisingly young age, I just wasn’t buying it. From the improbably white hippie wizard leader to people using the “teachings” of Christianity to act like true assholes, nothing about it makes sense. On the other hand, I’ve thought a lot about the generic concept of prayer and the benefits of people directing good thoughts and energy toward something, and I believe that it helps in some way, if only to dedicate a few moments thinking about someone other than yourself.

After my session on Friday, I can honestly say I am feeling better about my prognosis than I ever have. I have absolutely no idea if it’s “real” or if it will “work.” But I definitely know that red-lining stress and terror is not helpful or fun, so I’m for anything that makes that go away. The session was pleasant, calming, and not that weird. Ultimately, we just don’t know. All of the treatment options available to me have elements requiring some leap of faith: Western medicine. Chinese medicine. Energy work. I’m fine not knowing which of these ultimately cures me.

New Mayo scans

This was Mayo scan week, after a great trip to Las Vegas for a conference last week. We managed to find time to sit at the Pai Gow tables in the evenings. My dad texted “R u wnnng ny mny?” “Some times,” I replied, truthfully.

I’ve now finished six rounds of immunotherapy/targeted therapy infusions. After the first three rounds, scans showed that there had been possible slight growth of the known lesions in my peritoneum and lung, but there was speculation about “pseudoprogression,” questioning whether the growth was real. Fully expecting that this week we’d start to see the lesions shrinking, instead there’s continued growth of the known lesions, and the appearance of more. Still teeny tiny, not enough to feel or affect my day-to-day life. Since this line of treatment is not as effective as hoped, time to change gears and try something else.

There’s a trial underway at Mayo that’s testing the efficacy of the immunotherapy infusion combined with an oral targeted therapy. I got signed up for that – but won’t know for a couple weeks what treatment I’ll receive. I’ll be randomized into either the infusion + pill group, or only pill. If I wasn’t participating in the trial, the next course of action would be the pill alone (as there isn’t an approved combo yet – hence the trial). This means I’m no longer having any infusions in Minneapolis – if I get into the group that gets infusion + pill, the infusions will happen at Mayo every three weeks, and I’ll take the pills daily from home. Either way, infusion or no, I’ll be going to Mayo every three weeks to check in and get blood work.

My Mayo oncologist doesn’t seem concerned, and made it sound like all of this is just part of the process. Of course, my takeaway was much different, leaning more toward the “I’m fucked” conclusion. I’m reminded to maintain a positive attitude, and avoid stress.

In the 2011 Lars Von Trier movie Melancholia, the premise is a rogue planet is on a crash course for Earth. It’s a really good, really dark movie, showing characters in varying stages of meltdown in the face of impending doom.

I can tell you that it’s extremely difficult to stay positive and avoid stress when there’s a planet (figuratively) coming at me. The idea that stress makes cancer worse does not, in any way, help alleviate the stress. Like at all.

Meanwhile, the idea that I have terminal cancer remains as implausible as the idea that I’m about to collide with a planet. It’s hard to reconcile.

Whatever happens, you won’t be able to say that I fought bravely. More accurate to say I kind of half-assed it, failed at positivity, and used the diagnosis to get out of shit I don’t feel like doing, eat what I want, and do drugs.

We talked to my Minneapolis-based oncologist. We wanted her to tell us how long I would live, which of course she can’t predict. Bob kept asking the question using different words, as if he could trick her into giving a timeline. It would be so good to know! We’re currently operating business as usual – nothing has changed, aside from the cloak of doom. If a change in my status is imminent, we might choose to live differently. Travel? Go visit friends? Experiment with street drugs? I’ve latched on to the idea that I can’t leave Bob with a house full of crap that he’d have to deal with when I’m gone, so I’m feeling stress about getting the house cleaned out, even while knowing this is a crisis of my own creation, i.e., not a crisis.

My AFP (liver cancer tumor marker blood test) was 131 in October 2022, right before liver surgery, then dropped to 3.2 in December 2022, right after my liver surgery. Since then, it’s been creeping up incrementally to 9.3 in March 2023, 12 in June 2023, 83 in October 2023, 185 in January 2024…and is now 626 this week. What the fuck. My Minneapolis oncologist doesn’t think it means much, but given my not-medically-informed observation that 626 > 3.2, it sure seems bad. She assured us that 626 is nowhere near the world AFP record. I don’t know if I believe her.

Walking the dog today, I speculated on which one of us would outlive the other, me vs. Arzu. Arzu will be four in May. The race is on. This is all really weird. In other not really news, I’m now a regular THC seltzer drinker. Not in the daytime, but not ruling it out.

Shiv in the gut

I think I'm starting to understand the patterns of post-immunotherapy side effects. I've now gone through six cyles. They're a little harder to decipher (compared to chemo side effects) as they're more subtle, and they could be easily caused by something else. The effects also can be cummulative, so symptoms can increase in intensity over time, after subsequent dosing. My Minneapolis oncologist is pretty chill about all of my "complaints": a few days after the infusion, my mouth and throat feels swollen and sensitive, like when I'd get thrush after chemo. But I'm not actually getting thrush, I'm just having "thrush-y" symptoms. This also feels similar to sucking through a bag of hard candy, which between the sugar and the microscopic cuts from the sharp candies, leaves your mouth feeling a bit beat up.

The cycle before this last one, my sensitive mouth and throat slid right into a full-blown cough/chest cold. I don't think it was caused by the infusion, but it does make it more difficult to figure out where the infusion side effects ended and the pedestrian cold started.

Also a few days after the infusion, my eyeball sockets are sensitive, and if I roll my eyeballs around dramatically making googly eyes, it's uncomfortable.

I report all of this to my Minneapolis oncologist, who has an attitude that if I'm not bleeding from my eyeballs and my limbs are all still attached, I'm fine, get on with my life. Stop making googly eyes.

We have a new side effect that appeared after Tuesday's infusion. Starting about Wednesday night, if I took a deep breath, it felt like I was getting shivved in the gut. The run up to a sneeze or a yawn makes me yelp. When it was still there Thursday, I decided I could rule out gas. We're supposed to be watching for things like abdominal bleeding, so while the pain got steadily worse, it never was unbearable, I held on to my oncologist shrugging and saying she thinks all of these pesky little activations are a sign the drugs are doing something.

Bob kept pushing me to get it checked out, but I can't. I really don't think something terrible is happening in my gut, and thing is, if it turns out that I can't tolerate the treatment, well then, I'm fucked. So it's fine. I'm fine. I'm working, doing all the normal things. None of this is affecting my ability to function fully in the world. I think the gut pain is getting better. I don't do myself favors to aid tracking progress when I do things like eat only donuts and Russian tea cakes for a full day and then try my first microdose of magic mushrooms. Any of those things on their own might make me feel a bit off. Cries for help that sound totally reasonable and enjoyable in the moment...still trying to find the magic combo of non-narcotic things that have the effect of 1/2 a Vicodin. That's all I want, 1/2 a Vicodin a day. Loosens the clenched muscles in my neck, takes the pain away, brings in light euphoria, gives me a little pep. That's what I'm looking for. Experiment #1, a lot of donuts and some shrooms, was not a success. Not without merits, but not what I'm looking for. The quest continues.

Clammy.

The other day Bob looked at me and said “You’re sick much more than I am,” to which I thought “Well, I have cancer, so…” but then I remember that cancer hasn’t made me sick. I feel fine, as far as the cancer goes, even as the roster of my affected body parts continues to grow. If we grouped all the cancer together, it still isn’t very much; I imagine like a tablespoon full? All of the spots we can see are very small. Not big enough to feel or affect my ability to function.

I was stricken in the last couple weeks. Having not had a serious cold or “normal” sickness since before Covid, I assumed what was happening to me was going to result in death. We’d planned to head to the cabin on Sunday, but my sickness was not on the upswing, and the thought of getting to rural Minnesota, developing pneumonia and seeking treatment at Lake Region Healthcare was terrifying. We agreed not to go up until after I’d turned a corner.

On Monday, I called the nurse line and ran through my list of symptoms, and it was decided I should be seen by the same day appointment clinic. Bob wants to talk through every eventuality: “What if we go to the clinic and they decide that you need to stay in town for other tests?” I refuse to spend time debating responses to situations that will likely never come up, so I said, “What if I go to the clinic and sprout horns, what will we do? We should probably have our answers figured out.” To which Bob replied, “You mean have our antlers figured out.”

After testing and chest x-rays and examinations by metro health professionals, the conclusion was (drumroll)… that I had a cold. A cold that included a cough and a sore throat. A small fever, which Dr. Nasty was unable to diagnose with his hand on my forehead (“Clammy”). No Covid, no RSV, no strep, no pneumonia. No antibiotics. My persistent hacking was keeping the whole family up at night, so I was given cough syrup with codeine and a prescription for benzonatate (which I wouldn’t classify as “good stuff,” though Dr. Google says it has a similar structure to cocaine, so maybe I should reconsider).

We get caught up in semantics; Bob took issue with me telling the urgent care PA that I have lung cancer. Fine, I don’t have lung cancer, but I have liver cancer in my lung, ergo, lung cancer. It seems weird to give the liver cancer so much credit, especially as at the moment, I don’t have cancer in my liver. “I have metastasized hepatocellular carcinoma in my lung” doesn’t roll off the tongue as nicely as “lung cancer.” I don’t know why I brought it up, as I know it’s not impeding my lung function in any way, and having a chest cold won’t affect the tiny spot of malignancy.

We finally made it up to the cabin, and Bob found me looking over my array of cough and cold treatments: Mucinex Sinus-Max, Alka-Seltzer Plus Severe Cold and Cough, Robitussin DM cough syrup, prescription cough syrup, and the prescription benzonatate. I told him I was debating the best combo and dosage where I would sleep all night without coughing, but still wake up. “Oh, I wouldn’t worry about that,” Bob said.

Now I seem to be cured and we’re heading back to Minneapolis today. Infusion Tuesday.

Updates from February 20, 2024 and 2017

Things (good and bad) keep piling on. I can’t believe it’s been seven years since the terror of my sister’s aneurysm. So much has happened since then! Funny that I think of the intervening years as some of the best of my life, in spite of all the cancer and unending bullshit in the world. Megan fully recovered from her bleed to see her three kids married, welcome two (soon to be three) grandchildren, and adjust to life with MS. I’d forgotten that Bob wrote this; maybe he did, too.

P.S. Also, why are we still plagued by Trump?

Bob Weidman

Originally posted by Bob Weidman February 20, 2017

15 years ago, before I met Kate, she had a ruptured brain aneurysm that nearly killed her. I've heard the story re-told many times, but I’ve always felt a certain emotional distance from the events because I wasn't there. That all changed on Friday when Kate's sister Megan had a ruptured brain aneurysm nearly identical to Kate's.

Kate got word on Friday evening, and less than an hour later was driving to the hospital in Fargo with her sister Molly to be with Megan and the rest of the family. I remained behind to care for the hound.

The good news is that the surgery was successful, the aneurysm is clipped, and things are going about as well as we could have hoped. It’s been a good couple of days for Megan, and we’re cautiously optimistic for a full recovery.

But back to me. Kate and I have been talking a lot lately about my tendency to avoid uncomfortable or awkward situations that might result in my experiencing "feelings" or "emotions". My instinct in most cases is to avoid the situation and pretend it's not happening, if necessary, forever. While this may not be the most productive coping mechanism, if the goal is to avoid any emotional reaction whatsoever and stuff any feelings down where they can never be heard from or acknowledged again, it can be extremely effective.

Needless to say, the present situation has presented challenges. I've been going back and forth between re-living Kate’s aneurysm, missing Kate more than I could have imagined, being overwhelmingly concerned about Megan, and feeling useless and wishing there was something I could do to help.

As events have unfolded and I've been updating Kate with occasional texts about the dog or the cats or other excitement around the house, I've found myself wanting to send words of encouragement, and for some reason, "I'm thinking about you", “you are in my thoughts", and "sending positive thoughts” don't quite get at what I want to say. On a couple of occasions, I've found myself typing the words "I'm praying for you."

The complication here is that I'm not praying. I’m absolutely not praying. I’ve never prayed, never saw the use in praying, have never seen praying as a particularly effective problem-solving strategy. Not to mention practicalities like who even to pray to (since my people killed Jesus).

But there is something strangely comforting in the thought that praying might be helpful, both because it puts a veneer of control over my utter powerlessness over the situation, and because it gives the perception of actually doing something affirmative and useful, as opposed to the reality of me sitting here hundreds of miles away “sending good thoughts".

Not sure what to make of these so-called feelings. I don't imagine I'll be doing a lot of praying anytime soon, but I feel like I have a much better understanding of people who do.

Oh, and fuck Trump.

Brought to you by...

This update brought to you by Benson & Hedges Deluxe Ultralight Menthols (with contributions from Marlboro and American Spirit): the nodule on my lung is malignant.

The report is in my Mayo portal, and just in case I can't comprehend the findings, every section has a yellow rectangular stamp that says ABNORMAL. Case number: Abnormal. Report electronically signed by: Abnormal. Gross Description: Abnormal. Source: Abnormal. Interpretation: Abnormal.

"A. Lung, Left upper, fine needle aspiration (smears/core biopsy): Positive for malignancy. Metastatic hepatocellular carcinoma."

I texted Bob when I got the news. "It is cancer in lung. Just got results. No way to soft pedal it." I emailed him the report. He told me that this result was way better than the stress dreams he's been having, where the lung nodule is malignant but it's a totally new and different cancer that requires a whole separate treatment. Imagine what kind of fuckery that would be.

I was initially feeling a bit gut punched with the news, but, thanks to Bob, I realize that it could be even worse. So this is good news, actually. Regardless, it doesn't change the treatment. I guess we'll see if it affects the outcome.

The message immediately following the Mayo email was this Wirecutter link. Is it a sign?

Let's keep getting old.

I had the lung biopsy at Mayo today. The procedure went entirely without incident. The doctor walked me through all of the things that could potentially go wrong: air leaks, bleeding, collapsed lung, coughing up blood (try not to do it when she’s threading a needle between my ribs into my lung). The fentanyl and Dilaudid made me not care, and not remember the details of the procedure.

I’ve kind of decided that the lung nodule is not cancer, but I won’t let myself get too attached to that idea. Managing expectations helps manage disappointment. For the moment, I’ve got Schrodinger’s Nodule. It’s both malignant and benign. It is more cancer, and it’s nothing. I hold both realities until the pathology report comes back.

I’ve been saying, “Let’s keep getting old” to friends having birthdays, friends checking in. I remember desperately wanting to be grown up, but spending subsequent years and then decades not wanting to get old. But it’s happening, and the numbers get harder and harder to reconcile.

And now that’s all I want. I just want to keep getting old. I know it’s no picnic, but that’s okay. Let’s keep getting old.

New information

Information kept coming in following our last Mayo visit. I’ve mentioned that I’m participating in a study that’s looking at the contrast solution used in PET scans in hopes of clearer detection of hepatocellular carcinoma (HCC), aka liver cancer. The PET scans involve being injected with a radioactive solution that the cancer sucks up, which “light up” when scanned. It’s a beefed up CT scan. I think. Since it’s a study, I don’t get any results of these scans in my patient portal, but the doctor who is overseeing the study sends me a message with some general thoughts. (Strangely, all of the images from the PET scan appear in my portal, but since it looks like a Rorschach flip book, it’s not useful to me.)

To recap, the scans at my last Mayo visit were following my first three cycles of immunotherapy infusions, and the take away was that I have no new lesions, but the known lesions in my peritoneum have increased in size, and there’s a lesion in my lung that I need biopsied, as it has also increased in size. “Oh.”

My Mayo oncologist Dr. Lionel talked about the possibility of “pseudoprogression,” which could make it look like the lesions had grown, when in fact they haven’t; Dr. Tran, who is overseeing the study, wrote to say that basically what was shown as growth on the CT scan was not lighting up on the PET scan, so she agrees with the pseudoprogression idea. I asked her if that lung nodule lit up; she said it had not. We’ll see what the biopsy shows, but this new information sounded a little more positive.

The PET scan study is testing how hepatocellular carcinoma responds to the radioactive tracer used in the detection of prostate cancer. I definitely feel like I’m participating in – and benefiting from – pretty incredible advances in cancer treatment.

I was referred to an integrative medicine doctor in the oncology department at Mayo. She advises on things like nutrition, stress mitigation, and alternative therapies. She’s a big proponent of mindful meditation. I explained that I really like Vicodin. She signed me up for an intro to mindfulness webinar, and did not give me Vicodin. She also sent me links to open and upcoming trials looking at psilocybin (magic mushrooms) and also MDMA (Ecstasy). There is increasing interest in how psychedelic drugs, combined with psychotherapy, can actually re-write neuropathways and improve PTSD, stress, despair, trauma, etc. Bob was particularly interested in an MDMA trial that administers the drug to both the cancer patient and the caregiver.

Mayo scheduled my intro to mindfulness webinar during a time that conflicted with my next immunotherapy infusion, but I kept the appointment, predicting that I’d be well settled and just sitting around absorbing drugs by that time. It would have worked perfectly, if my veins cooperated. I also thought the webinar would entail passive participation. Nope! At the time I needed to log in to the webinar, there were two nurses working on my arms, wrapping them in hot towels, trying to get a vein to pop up. Something would look good, then disappear, or would pull blood, but the saline injection test would make the tissue bubble up – fail. The webinar was full participation – it was the instructor, one other patient, and me. Breathing exercises while I was repeatedly stuck with needles. It was a circus.

I still have no side effects from the infusions – just lingering bruises on my hands and arms from the IV attempts. We headed to Washington DC the next day for a conference. Coming home today, we departed the plane and stopped in the restroom. When we were almost to the Uber pick up area, a woman walked up beside me, saying, “I don’t want to touch you, but your dress in all bunched up in the back.” Perfect. Just kind of wedged up in my leggings. Bob said, in his defense, that he had been walking in front of me the whole time, so couldn’t see the problem. It wasn’t actual bare ass, but not ideal.

Oh.

Posted January 11, 2024

Our decision to get a hotel room in Rochester the night before an early day of scans and appointments at Mayo was brilliant. I rolled out of bed at 7:15, and was at my CT scan appointment at 7:25. It was great to have the room to go back to between appointments. I made one error: turns out someone about to get a battery of blood tests, including glucose, maybe shouldn’t have pancakes with fake maple syrup for breakfast. Those results don’t fairly represent the efforts of the chef who is preparing our uber healthy food every week.

The last appointment of the day was with my Mayo oncologist, Dr. Lionel. This is the first visit since I started the immunotherapy treatments. I’ve now had three cycles of infusions. There was good news, and there was “Oh.” news.

The good news is that there are no new lesions (are they called lesions in this application? Tumors? Spots? Shouldn’t I know this?). The “Oh.” news is that the old lesions have grown. Dr. Lionel had prepared us for this at the last visit; it can take a bit of time to turn the tide, so this increased growth of the spots in my peritoneum (abdominal lining) at this stage is not at all uncommon.

My lungs have always had assorted nodules that are probably nothing that we just monitor. One in particular seems to change in size; got bigger when I had Covid, then seemed to get smaller. Now it’s bigger again, and Dr. Lionel is concerned that it might be part of the original liver cancer spread, and has scheduled a biopsy. “Oh.” (Cue the almost imperceptible but ever-constant shrieking.) It wouldn’t be great if the cancer is more widespread than originally thought.

Biopsy February 2 at Mayo. Just a needle biopsy, outpatient. I’m very familiar with those. Hell, I could probably do it myself at this point if someone loaned me an ultrasound and gave me a long needle. I am already working on my performance that will ensure a bump of fentanyl and maybe Versed. They say that “most people” do fine without sedation, but I’ve learned that if I express discomfort at the earliest (try to be reasonable) point in the procedure, they’ll turn it on. Maybe I should be concerned about my level of excitement about getting medically supervised fentanyl, but on the other hand, the anticipation quiets the shrieking for a bit.

I’ve completed the scheduling puzzle for the next three months. Now to update calendars and make complimentary hotel and pet management arrangements as needed. I don’t like scheduling, but I like having a plan. Meanwhile, I continue to feel absolutely fine. This is all so strange.