Executive Summary | Keepin’ it real (positive)

Random Data | You circle the globe with a rope. Now, you want the rope to be one foot above the ground everywhere. How much extra rope is needed?  Take a guess. Answer is HERE

Chemo | 30 bi-weekly rounds completed

CEA | 8  [0-3 = normal. 10-20 = extensive disease. 20+ = cancer spreading.]

MEDICAL UPDATE

Due to two bowel obstructions in March, still on liquid/soft foods diet, and after a Mayo consult with my oncologist there, we’re going to do another consult with my Mayo surgeon (May 8) to discuss 4 options: 1) put in intestinal stent, 2) cut out intestinal pinch point(s) and patch remaining ends together, 3) pinch off my small intestine from large and have it protrude out of my body (stoma, with bag), or 4) just wait for future changes in CT or CEA or the next blockage and then change up chemo drug protocols (e.g. add oxaliplatin back in, tweak Zirabev, add add'l chemo drugs).

At last week’s CT scan, found no new mets spreading. Existing tumors not growing, but not shrinking, either. Stable. CEA at a good level.

NON-MEDICAL UPDATE

Today, I’m gonna ONLY focus on the positive aspects of having a terminal stage 4, incurable, inoperable, metastasizing cancer diagnosis of the intestines/peritoneum:

[Editor’s note: As possible, I have Rebecca proofread these for errors. She thinks I overexplain my type of cancer. I had to mansplain to her that I’m setting up a good dichotomy by explaining the cancer in the most negative light as possible (which to me means LOTS of adjectives), to then pivot to why it’s not all so bad after all, with plenty of good things coming out of this lil’ medical journey.]

So, here's the list, sorted in no particular order except how I brainstormed 'em.

1. Hugs. I’ve never had so many life-affirming hugs as this year. Love it. Love to hug other beings. Such a human connection made. Even burly, tough guys want to hug me. Who knew? Bring it on!
   
   
2. Perks. People hear I’m a terminal cancer guy, and want to help. Random stranger angels at the ISU Hilton Basketball season ticket holder section offered us free tickets (row 5 behind the bench) to the last home Cyclone game (vs BYU). Alas, I was doing chemo so had to decline. Likewise, the angels at Train Bell Resort (Pete and Jane – totally awesome people, doing exactly the right career for their personalities) gifted us a free additional week in their cabins this summer, but alas, also had to decline due to my chemo schedule. Photog that took family pictures of us in an arcade for posterity (pre-chemo) wanted to comp us the pictures (I paid her anyway, and she donated that in full to the American Cancer Society). And I could go on… and on… There are saints/angels everywhere. Good people doing good deeds for those “in need”.
   
   
3. Unhealthy living. No worries about typical health concerns. Cholesterol numbers? Who gives a f***? Eating greasy, lardy, red meat? Sure, why not (pre liquid diet, that is/was). Regular exercise? Bah, why bother. Fruits and veggies? Only if I like them pureed. Dental cleanings? Why bother! Drinking too much beer? Who cares? (as long as my liver metrics stay nominal, which they have… whew! such a relief)
   
   
4. Our kids. (Hunter and Cameron) have never been closer. Many home visits from college during weekends. Weekly “Cam-Jeff” events on calendars. Matching tatts. Having real, honest conversations with them both. WhatsApp-ing more than ever. So cool. “love ya” - “love ya” said at most departings.
   
   
5. Bonus days. Every day I wake up, I think of it as a “bonus day” (was told I’d be dead by January 2024). Such a gift of life. So happy to still be alive. So trying to make the most of every day, every interaction.
   
   
6. Weight. I’m losing weight effortlessly. Sure, I’m on a 100% liquid/soft diet and chemo, but I’ve lost 20 pounds this month “painlessly”. Woop woop.
   
   
7. Global/Earth worries. (this is a selfish one!) Worries about global warming, US political divisiveness, nuclear threats from rogue nations, overpopulation, antibiotic resistance, hyperinflation (thanks, Carter!), AI dominance/disruption, etc… are not a really direct concerns for me any longer. I should care but realize none of those will directly affect me. Selfish? Maybe. But I just naturally worry a lot less about any of that these days. Life (and news) are so much more “local” to me now.
   
   
8. SSDI. As a Stage 4 intestinal cancer guy, I’m immediately eligible for social security disability insurance (SSDI). I’ve paid into social security for 40 years, so I feel NO guilt in taking monthly SS payments now, early by about 10 years. It’s my money. And it’s going to keep coming in until I circle the drain. I have the tables from ssa.gov showing my contributions... and now, the gov’t is simply paying me (and my employers’ contributions) back that I’ve paid in since 1986. Well, until the SS bucket of money dries up (thanks, Clinton!).
   
   
9. Naps. No guilt about midday naps, or turning down invites due to fatigue. Or blowing off / rescheduling things due to chemo / cancer / woe is me.
   
   
10. Happy hours! I’ve met (and re-met) up with so many more diverse people than I normally would have, due to my free time. So many laughs shared. Beers tasted. Connections (re)made.
    
    
11. Keepin’ it real. Having “real” conversations about spirituality, the afterlife, NDEs, God (or lack thereof), astronomical science, etc. Going in deep with friends about these real, intellectually stimulating topics. What’s after this life? Are we alone? Is reincarnation a thing? Jesus: heretic or God? 4D! Discussing a favorite Neil deGrasse Tyson quote, “God is an ever receding [shrinking] pocket of scientific ignorance”
    
    
12. Drugs. THC and alcohol and narcotics: I’ve been imbibing in THC and narcotics to ameliorate the chemo nausea. I have “leftover narcotics” from my surgeries that I periodically take to help out with said nausea and stomach pain. In the ERs, I’m usually higher than a kite, because I always get so many (self-requested) pain-killing narcotics. Not anywhere close to being addicted (yet), but is being addicted to narcotics the worst thing that can happen to a terminally ill cancer guy? I dunno, but may find out… Maybe I’ll even try mushrooms at some point… cuz again… why not?
    
    
13. No tough days yet. Even days with some major suckiness in them (ER & hospital stays, enduring pain, bad news with CT, laparoscopy, biopsy), there have always been some light, fun, funny moments during those dark days, too. So, I've never had a tough day yet - I’ve had some tough moments inside of good days. But when I find myself in a string of “totally bad, tough days” with no light, then I will refer you to the next bullet point below. I’m tempted to edit out ANY of this negativity, but this bullet actually proves my point. This is a very positive list except for a few negative parts in a few bullets. Nobody would call this list a “negative list” just ‘cuz a few bummers showed up. On the other hand, I’ve also not yet had the “perfect day”. Just perfect moments and hours, sometimes a 3/4 perfect day, or a perfect half ending day spilling over into the morning of the next half-perfect day. I’m beginning to channel Steve Martin’s The Jerk quote at this point. I know we've only known each other four weeks and three days, but to me it seems like nine weeks and five days. The first day seemed like a week and the second day seemed like five days… I have it written down...
    
    
14. Mission/purpose. MAID (Medical Aid In Dying): I’ve channeled some of my energy into getting MN legislators to allow MAID. Spoke at press conferences and congressional hearings. I feel heard. I’m making a difference. I *will* choose my own ending (w/ or w/out a passed MN law).
    
    
15. Niceness. Who’s gonna pick on a terminally ill cancer patient? Who’s gonna bust my chops? Who’s giving me a ticket for not wearing a seat belt when I’m wearing my chemo chest pump? Who’s gonna tell me I’m sometimes an A-hole? Nobody! Okay, maybe you should… (in fact, please do if I’m guilty)
    
    
16. Speaking of niceness - stuff. random, unexpected gifts sometimes appear. A knitted beard when I had to get rid of my real one. A dance party in a box. Socks, candles, Nutella, interesting books sent. Some random gift cards. Letters/cards. Artwork. NOTE: THIS IS NOT A BLATENT PLEA FOR MORE STUFF. I’m very satisfied if I never get another card or gift again. I still AM a minimalist. Maybe if I threaten to donate every future gift (or estimated cost of gift) to organizations that I know you would hate will dissuade you. Honestly at this point, instead of any ‘thing’, just hanging out with me or sending me a DM on WhatsApp or Messenger or text is so cool. But thank you for your past kindnesses’ses’.
    
    
17. Compliments. After 30 rounds of bi-weekly chemo, people sometimes tell me “wow, you look good (quiet part rarely said >> for a cancer patient doing over a year of bi-weekly chemo and not eating real food).” But I’ll take it.
    
    
18. Health Care. Out of pocket medical expenses are maxed in Jan, so all quality med at ER visits, chemo, Mayo visits (for now, but cue ominous music come June for Mayo in-network-ness kicks me out… but alas… this is a “happy journal” so shhhhhh and thanks, Obama!), are covered 100% by insurance after that. Last year: $1.2 million spent. We paid $46,000. Nice.
    
    
19. Mayo. I have access to Mayo Clinic. The smartest, most efficient, most beer loving, most science-ee, caring health care providers available anywhere in the world. Just a 90 minute drive away. Also great with tuna.
    
    
20. Hair-less and less-hair. So, having hair-free legs, chest, neck, etc. has been nice. A masseuse told me, “I love your skin – so like baby’s skin – a really big baby!”. Thanks, lady… I think?
    
    
21. Beer. I love me much beer (probably too much). I continue to be able to imbibe (at least half the time in my chemo week 2s). To splurge. To binge. To drink meaty, hearty, hazy, unfiltered, high ABV, high IBU local IPA beers. So lucky.
    
    
22. Free time. No pressure to work. Gave up most “recurring” volunteer activities and only do them flexibly ad-hoc now (I can be as unreliable as my chemo / hospital visits). I now mostly spend my days finding, losing, and moving my 53 pairs of reading glasses around the house.
    
    
23. Extended family. Blessed with siblings (and their spouses) who have been so amazingly supportive. Traveling for a “last party before chemo” at a great brew pub. Rallying around me. Attending my “Jeff's first annual last birthday party” (and can’t wait for "Jeff's second annual last birthday party”... but better put me down as “tentative”). Flying to Florida to enjoy our brothers’ time together. A 7 hour bus trip that sister T took thru Mexico to join me in Belize. Sh**… I couldn’t ask for better siblings. Love you all. So, so lucky.
    
    
24. You! My friends from Koch. 3M. MN Pets. pickleball. neighbors. old college friends. Boglehead friends. met when traveling friends. online friends. all family. our new Ukrainian friends. high school friends (wow… 35 yrs we did high school but feels like 5). My misc. saints I’ve met along my pretty random life. Damn, people are so good / kind / caring / supportive.
    
    
25. MN Oncology staff. So many untold hours (okay, I guess now it’s “told” hours) of meeting so many awesome people (nurses, NPs, receptionists, schedulers, CNAs, doctors) while in my bi-weekly chemo ‘tank’ at MN Oncology. They are the best of the best. Caring, smart, hard-working, supportive. Major shout out. After 30 rounds, I feel like some grizzled WWII tank crew veteran storming through occupied Europe like “Fury” the movie, or “Band of Brothers”, sometimes ignoring the noobies and just commiserating with the veteran nurse crew (and other staff and doctors) that can be trusted. I have had so much time just shootin’ the breeze with them and enjoying their company. I could write an essay on each one of them by this point. I would but that may cross boundaries and don’t want to be known as “nurse stalker Jeff spy” in the tank.
    
    
26. More Vacations. Doing lots of “curtailed bucket list” items. Traveling the world. Travel budget is irrelevant. Spending like a drunken (traveling) sailor. Belize. Canada. Europe. West coast. South. Up North. DC/NYC/east side. As my world inevitably shrinks, but we’ll always have Paris. Here’s lookin’ at you, kid.
    
    
27. Cold water. Even before taking oxaliplatin (a chemo drug with side effects of cold sensitivity of mouth, throat, fingers/fingertips/toe tips and neuropathy/numbness there, too…. Thanks, Biden… and damnit), I would often discuss to whoever’s in the vicinity about the joys of drinking cold, cold ice water. Not just after pickleball, either, but any time of the day/night. Ice cold milk is a close second. Dropped Oxaliplatin at Round 7 and was able to re-imbibe in the cold deliciousness of water again soon thereafter. Oxaliplatin will most likely be added back in to my chemo soup, so I gotta enjoy that ice cold water every day until then.
    
    
28. Luna. She sleeps like 20 hours a day, matching some of my week 1 chemo days. So, we’re sleepmates, and I have someone to keep me company. And also for those restless, sleepless nights, too, I can always count on Luna to be there for me then, too. “Good dog… goooood girrrrl Luuuna.”
    
    
29. Minnesota seasons. Seeing the very tangible changing seasons around here, allows me to see visual proof of time marching on, and me hanging on ‘just one season at a time’. Alas, this winter skipped right from fall to spring. Oh, well… still much seasonal weather changes compared to San Diego, et. al.
    
    
30. Chore relief. The family has really stepped up their chore game during my Week 1s of chemo. Cameron even snowblowed us out of that last big snowfall. And mows the lawn. Shared help around doing dishes, laundry, dog walks and dog park visits, home cleaning, taxes, raking, etc.
    
    
31. New foods. On my new liquid/soft foods diet, I’ve tried more new foods and spices in the last few months than in the last few decades. Lobster bisque (thanks for idea, Brian N), tomato bisque, curry on everything, cream of bacon condensed soup, misc. pureed tests of “normal” food.
    
    
32. I’m (sometimes) a better human. I’ve slowed down considerably to enjoy life (sometimes, e.g. in doctors offices and ER, I’ve had no choice). I do think I’m more patient (except while driving), more friendly, more outgoing, less judgy, a better communicator, and less bored when doing or watching trivial things. We've sponsored some Ukrainian refugees to be able to come to MN and bring their families back together.  
    
    
33. Photos/videos. Except for when our kids were under 5-ish, we’ve never taken more pictures and videos around the house. And out on vacations. I love seeing our Google nest randomly scroll through all of our recent pics. In fact, I have like 30 videos in the Gmail / YouTube hopper, waiting to be sent out to various people at various milestones in their lives, and 35 more planned. Yeah, yeah, one of those completed videos is my video intro to my obituary (but don’t worry… spoiler alert… it’s not sad, but not necessarily a laugh riot, either).
    
    
34. Less chemo nausea: After 30 rounds, I think we have a pretty good anti-nausea protocol, involving many drugs taken at specific days/times (olanzapine, ondansetron, dexamethasone, prochlorperazine, lorazepam, scopolamine patch, trazodone). Downside is that I sleep very deeply (like Michael-Jackson-deep in his last nights) during Chemo Days 1 and 2… so deeply in fact, that my record of 18,243 days without a leak (in bed) has been broken. So, the “# days with no accidents ___” sign has been reset to 2 Yeah, yeah, waaaaay TMI, I know, but find it a bit amusing that my 50 year record fell this week. As proof of how good this tweaked protocol is, I’m perky enough to write this entry on Day 3 of a 14 day chemo cycle, just getting home from chemo pump removal. Heck, I may even be well enough to play pickleball tomorrow (day 4!).
    
    
35. Pickleball. Speaking of PB… still playing PB whenever and wherever we can. It is a consuming, addicting, healthy lifestyle. Love my PB peeps. Love the PB culture. The sweating. The occasional PB happy hour/party. The competition. The really long, occasionally skillful rallies. Editor’s note: YOU should be playing pickleball.
    
    
36. <More> Pickleball. No, really… you should be playing pickleball… don’t make me create a third PB bullet point.
    
    
37. <Even More> Pickleball… equipment. Ok, you forced me… get good court shoes, Franklin X-40 balls, a good paddle ($80+ by Selkirk or Paddletek), and you’re good to go.

PS… no, no, no… I don’t ever see doing a counter-point journal entry of the “negative aspects” of having cancer. What a drudgery that would be to write and read. No thanks! I’m still going to concentrate only on the joyful aspects for as long as I can.

PPS… the random answer is 6.3 ft of extra rope needed. Who knew? Top of page video explains it well… and very briefly. "think of earth as a cube..."