Written by John Heaston while on chemo, transfusions, prescriptions and more. If you want the whole story, start at the bottom, like one of those annoying email threads…
My Mini-Roller Coaster on the Edges of Cancer Detection, This Is What Living With Cancer Looks Like (8/14, +114 days): Now we’re 2 weeks past the bone marrow biopsy. The hesitation came from conflicting signals. We were dancing on water when, after a nearly undetectable BCR/ABL blood test a month ago, the bone marrow biopsy came back with no detectable cancer, but “please verify with a blood test.” Perfect, they did a blood test at the same time as the biopsy. Well . . . that result went the other way from the previous blood test. What had been 0.0038%, just 0.0008% away from undetectable, was now 0.077%, technically doubling. This week the doctor clarified one data point does not a trend make, there’s often a roller coaster around these minuscule, almost-undetectable levels and that anything below 0.1% was technically molecular remission.
I also had a “survivorship” class, and combined with the ongoing detection (possibly lifetime), this is what living with cancer looks like.
This week will be the 1st week since February that I have not had an appointment at the Cancer Center. We’ve now evolved from twice a week visits, to every other week visits. Unless things get out of whack, I’ll be done posting here. Getting back into the real world has me hopping, but some amazing opportunities appear to be developing. Follow that kind of information elsewhere on this website as it’s ready to be announced. Appreciate everyone’s readership and support, it works wonders!
Still Catching up to My Bloodwork (7/16, +85 days): Had another chimerism and BCR/ABL test, so thought I’d share those results as were about 2 weeks out from the bone marrow biopsy. Chimerism score (a measure of donor cells in my blood) is still 100%, so still a perfect score. The BCR/ABL, which measures the prevalence of the gene in my blood that causes my cancer (was 95% when I was first diagnosed), dropped from 0.3% to 0.0038%. If I’m understanding the phrase “The Software sets the lower limit of detection at 0.0030%” correctly, that means I’m 8 ten thousandth away from being undetectable. Not bad, but the bone marrow biopsy will be a more accurate test. As they reduce the steroid prednisone, now down to 10mg/day from 30mg/day when it started, I recess and have skin and GI flare ups, but those settle down fairly quickly. Hopefully I’ll be off steroids by the time of the bone marrow biopsy and we can start to really reduce the immunosuppresants (for the graft versus host disease) and the anti-infection meds. All in all, very grateful.
Wishing I Felt as Good as My Bloodwork Looks (6/5, +44 days): Wow, I can’t believe it’s been a month, so deepest apologies to let a week stretch that far. No excuses except the fatigue and stepping back into light duty has been a little exhausting.
So first, the good news, my bloodwork looks great according to the doctors. That means a few things, but most importantly engraftment is working and my new bone marrow is producing new blood, so white blood counts, hemoglobin, red blood counts, platelets and neutrophils are heading in the right direction, generally a 2-steps forward, 1-step back kinda pattern. This also helps minimize infection risks, though I still have a baby’s immune system. Other good news, the lung consolidation is officially gone as of Thursday’s CAT scan, so my anti-fungal medication is getting reduced. My first chimerism blood test (not nearly as exact as a bone marrow biopsy) showed my blood was 100% donor cells, which is what they want to see. My BCR/ABL blood results (not nearly as exact as a bone marrow biopsy), the measure of my cancer, was 0.3%, so there’s still some cancerous cells around, but hopefully I’m not producing any new ones, though they have restarted the drug that treats the cancer, scemblix (which can run $6400/month with insurance on my previous dosage, so far I’ve been okay on patient assistance programs) as a precaution.
The other great news is that for all the complications I could be navigating from graft versus host diseases (GVHD) — from mouth sores, to full body, deep rashes to more serious GI or lung issues — have been fairly mild or treatable so far. The worst so far for me (knock on wood), about 3 weeks ago I developed a rash all across my face, head, neck and upper chest, and it was all I could do to concentrate on not touching or scratching it. To borrow a phrase from Daniel Bergner’s The Mind and the Moon describing benzodiazepine withdrawal (an interesting follow up read to Louise Erdrich’s Love Medicine, which was perfect for a muddled, recovering mind) , “there was nothing to be done but wait out the subcutaneous pain that was so consuming it seemed to illuminate the ending of every agitated nerve.”
I started steroids (prednisone) and that helped a lot, but we’ve already started tapering that off, because it works against building muscle (that’s a different steroid) and it means I now have to see a diabetes doctor because of my elevated blood sugar levels. Lori has me up to almost 1.5 miles or more walking every day and there’s some elevations, working the glute muscles in the leg, which particularly are diminished with this type of steroid. The doctor told Lori I’d be bouncing off the walls and talking so much she’d be sick of it (though she said she liked that idea), except the exact opposite happened, I hit a harder wall of fatigue then I’d experienced yet. From the moment I woke up it felt like I could just fall back asleep again, but whenever I tried, I wouldn’t fall asleep, just laying there exhausted. The doctors say this is normal, my body is dealing with so much rebuilding and change, burning tons of calories. That exhaustion spell started to clear middle of this last week, so I’ve otherwise been holding on to my energy for my return to “light duty” — which has actually meant a lot of LoCo thinking mostly as we’ve got big changes going on there (look for the new app this week!). I’d say I’m 60% on a good day, at least 30% most days, though I’m going for a 75% week this week (fingers crossed).
I’m eating steady, have an appetite and start my meals with gusto, but it becomes a grind to finish the plate most times, but I’ve gained about 7 pounds. Still sticking with the basics, chicken and fish grilling with very light seasoning and roasted or mashed potatoes. Lori made a great grass-fed roast beef with parsnips and carrots and I’ve had a burger and onion rings from Dinker’s, patty melt from Barrett’s and pizzas from Tasty Pizza and Mama’s (just pepperoni, not my usual triple sausage trio, not ready), but those are one off exceptions. Still touch and go and lots of cereal and ice cream.
If this holds to 100 days, and by all accounts its off to a great start, then they start re-introducing vaccinations, starting with the very first ones you get as a baby. That process runs another 2-3 months, at which point I might have an immune system that lets me travel and hang in crowded situations. Until then, the normal viruses, bacteria and fungal infections have just extended my pandemic existence.
I might not report back for awhile. A lot of folks to catch up with and so many thank you’s to be had, especially for all the financial support. I am so speechless and blown away and will never be able to say enough.
The bone marrow biopsy will be coming around the 100-day mark, and I’ll be sure to report back then, unless something unusual happens in the meantime. After that will be immunizations and the next major milestone is 1-year, at which point if I haven’t had too many issues with GVHD, there’s a decent chance I won’t in the future. Now, the hard numbers for my top of condition, age, diagnosis and transplant — based on 2015 to 2018 data collected by the Department of Health and Human Services — is 93% survive 100 days, 82% survive the 1st year and 63% survive to the 3rd year. Needless to say, I’m going to treat this next year year or two as my best chance to build resilience into our businesses so they could run without me and not to think important things can wait. Very excited to share we just launched an employee-ownership program as part of that and Lori and I are already making next Spring and Summer’s travel plans.
As always, thank you so much for your support and good thoughts. I am so truly blessed by you.
Here’s to Moms & Partners (5/8-9, +): First off, now belatedly, here’s to all the Moms! I was working on a public version of a toast I gave at my mom’s birthday dinner for this post, there’s alot to honor, but that got sidetracked this morning. Suffice to say she’s been unflinching and selfless in being a key pillar of this battle and recovery. Love you Mom!
And it is downs and up.
Won’t share the gory details, but Sunday’s early confidence gave into dread as I had my first nauseous episode, throwing a monkey wrench into Lori’s carefully timed preparations. She had to get to her family Mother’s Day while preparing (with a well intentioned patient who planned to assist) a Mother’s Day brunch for my Mom to caregive (ok, babysit) in her absence. I wasn’t prepared for this episode (handy green bags, not pill bowls) so it was messy, exhausting and scary.
Was able to eat not long after, and kept it fairly plain, while daughter-in-time Lori did all the work — Le Quartier croissant, fruit salad and homemade asparagus, ham and cheese quiche, the oven timing of which being key. Still gunshy and squeamish, I fell back on my staple cheerios after a tasty, ever-so-tiny slice of quiche. For now eating is a testing of the waters. Was a long day of waves, with middling sleep that night.
Today, we got our new blood draws and visited with the PA. Bloodwork was great, stable in important areas and growing platelets, a good sign of engraftment. Main focus now, not lose anymore weight. Also, I had good, focused energy for most the day and managed to get my steps in with 2 visits to the hospital, which adopted a Hawaii theme for Hospital month. Rising to the challenge I knocked down more meals successfully — egg & toast, 2 bowls of cheerios, half a pbj, and dinner of half croissant sandwich with chix, avocado and tomato, and half a protein drink. I’m perhaps most pleased I’m reopening my palate to more variety.
So take the ups as they come! I’m going to take a break here as I work some light duty into my recovery (it’s been 2 months since I was working F/T) and focus my writing on some thoughts for other bone marrow transplants (maybe other cancer patients).
Heads up, though I was initially totally opposed, my sister is launching something very soon. Maybe it’s your thing, maybe not, but I approve and edited the story. Seems I’m on a real get real trip. Appreciate this super sibling (and other cancer survivors, s/o to Josh France for his advice) in helping me open to all the ways everyone wants to help. Please know how much any kind of support means to me and gives us strength. THANK YOU!
Home and grinding (5/7, +14): It feels so good to be home, I bawled when I got in the door and to my usual recliner, partly in joy, partly missing my little buddy, and his few claw marks. His absence was palpable.
How do I feel? Really, really, really weird all the time, like there’s crazy change happening inside me. I’m taking about 40 pills/day, half designed mostly to prevent my body from attacking my new stem cells (and vice versa), the other half to attack infections should they try to find root against my dilapidated immune system. Took tonight’s batch without any apple sauce and I’ve got a few horse pills! Physically, it’s most manifested as GI discomfort, with waves emanating from the middle. Meal portions are still small, but growing, and very bland as I start slowly reintroducing anything that might mess with my GI. I’m moving at 1/4 speed/strength. Whenever the nurse/PA/doctor meets with me since transplant, they always ask if I’ve experienced nausea, dizziness, being light-headed, symptoms safely in control so far at that rate, but I need to turn my muddle up. There’s also the waves of fatigue and mental fog, that can follow any kind of concentrated effort. Oftentimes, I just need to sit and breathe to let these pass and I’m getting better at just barreling through.
Home versus hospital is focusing my attention on recovery, and without staff poking and prodding constantly, I need to lean and push harder. I thought for a second I would just wake up and things would feel normal, let modern medicine do it’s thing. “Be boring,” the doctors tell me. Now I’m trying to focus on making normal by my daily routine. Work in progress. If I just listened to my body, I’d be in bed all the time. For instance, morning writing is usually cheerier, starts to fade after lunch, picks up in the evening.
Gonna work on tomorrow’s post, hope all is well. I’m not, but so far heading that way, so for me, please give your normalcy (whatever you find) a big hug!
Rumbo a Casa & Getting into the Grind (5/5, +13): Heading home today, Cinco de Mayo, Omaha’s largest family celebration (this Saturday, of course, shout out to our El Perico crew marching in the parade) and an American invention to celebrate our Mexican heritage (and by that leadership, our Latino community). Please don’t fail to recognize our neighbors, new and old, that gives us so much hope, culture and humanity, who we too often 2nd-class as immigrants, undocumented or not (let’s see your family’s papers), even as they underpin our very economy and the privilege of wealth and comfort that comes with that.
A mi familia Latina, un saludo, con todo mi corazón.
My blood counts are improving quickly, beating the best estimates. Engraftment is off to a very strong start, a big testament to Ben’s robust stem cells (maybe a little credit to the vessel). Eating regularly (down only about 15 pounds) and moving regularly (won’t make the marathon mark in hospital floor loops, but did at least half that) helped.
Going home also means they can give me the intense medication regimen in pill form, with x2/week transfusion visits. For now, biggest symptom to navigate is an unsettled GI tract, and the ongoing fatigue, I seem to only be able to muster a few good hours of feeling normal a day still. And being mindful I barely have an immune system.
It’s not quite a day at a time, more take each moment at a time, but that’s stacking the days up.
Gracias mi amigos, for all the good vibes. It’s working : )
Feeling Your Force (5/4, +12): Started today strong, white blood counts jumped to 3.4! An early peak in what we know will be a roller coaster. It’s confirmed I’m heading home tomorrow. Started answering emails, got on the phone, made the Omaha Documenters meeting (shout out to Sherwood support! Still a ways to go) and then a fog settled in to the background of a tv Star Wars marathon until I forced myself to dinner. Thanks for making me feel connected, more tomorrow.
Bouncing Back (5/3, +11): There’s something fitting that on my Dad’s birthday, May 2, my white blood counts jumped from .1, where it had been hovering since my last post, to .4. I could physically feel the difference in my energy levels. It’s as if the rock of our family was there to catch me and help me get back on my feet, something I’m forever grateful he never (seemed to) tired of.
Today, it tripled to 1.2, still a ways from the starting normal range of 4, but heading in the right direction. Docs pretty pleased with progress. PA thinks I might even discharge a day early on Thursday. Still an intense home regimen and I’ll lose all my hair over next 1-2 weeks. I’ll just be starting my graft vs host dance, which can be very debilitating. Between days 70-100 they’ll have a better idea if engraftment has really taken over and I have a new cancer-free immune system. Feeling a little better today, regaining some energy. Hope to get back to some light duty shortly, though I can’t shake the feeling I need a break from my recovery!
The Descent (4/27, +5): I’m in a funky phase now that probably runs another week or so where the lingering effects of chemo/radiation have their worst impacts. We’re daily watching my key blood counts fall, waiting for those to bottom out, a sign my cancerous bone marrow is in its death throes, leaving me at my most vulnerable until Ben’s stem cells become my new bone marrow. My energy levels are dropping alongside, so maintaining good food and liquid intakes, not to mention some physical exercise, namely walking, becomes more and more challenging.
As an example, my platelets, key to blood clotting and stopping even the smallest amounts of bleeding are so low that I received what will be the first of likely many platelet transfusions.
As my blood counts recover, it’s a sign engraftment is happening, my brother’s stem cells becoming my new bone marrow. Now is when I probably go most silent. It’s all I can do to keep basic functions and to even be alert and awake a few hours every day.
Crying, part 2 (4/25): Mourning a difficult loss in the family today. Farewell Kato (2001-2022), Sweet Prince of Belly Naps, Sloppy Wet Nose Kisser, Traveler and Plopper of Interruptions, Morning Herald and King of the Garden. You gave so much love, always, we will always celebrate you, the Dude.
Dueling with Despair (4/23): This one is tough to write. So far, I’ve only broken down 2 times around this specifically. Last time I really broke down was when we lost Dad. I was there for his last breath, which really shook me, and then again when we were at the funeral Mass, looking at my Mom. We had actually just shared our own eye-roll moment with him looking down as military honors were offered in the name of a commander-in-chief he absolutely despised, even as a lifelong Republican. Duty and honor defined him, character mattered most to my Dad, who earned 20 years in military criminal law (unflinchingly taking on a base commandant 2-star gone rogue, a case that went through the U.S. Senate to the Supreme Court that would shorten the military career that was his dream) and had another 20 years around politicians and lobbyists, and knew a crook when he saw one. (Yeah, I went there, truth is truth, let’s get over fear in all this prosperity we enjoy and get real).
As a journalist, I had investigated my diagnosis and knew alot, but that’s a clinical understanding. Been bummed and down plenty through this, but really broken down, crying and sobbing, that’s very uncharacteristic of me. I’m about as positive a person as I know (you have to be that or crazy to start an alternative newsmedia and help launch a local delivery co-op) and normally I’m energized by adversity, but cancer can be cruel, crumbling even the best defenses. I credit my drive to my family, particularly my parents who both are first-borns with A-type personalities. That’s maybe backed by a stoicism in those German backgrounds. My dad’s side firmly rooted in Omaha’s educated elite (great grandpa was in the 1st graduating class from Creighton Law in 1904), but completely unaffected by any of its Brahman traditions (like spelling your state name backwards for a male-dominated, not-so-secret society). My mom’s side are German-Jewish refugees, some of the later (and in one case maybe amongst the last on a boat out of Portugal in 1940) to escape Hitler, forced to rebuild in a country without prospects and where they couldn’t speak the language.
The first time I broke down was after the face plant, a day or two before I was scheduled to return. I had been walking through the house checking on my personal and business preparations. Near as I could tell everything was in order, and as I ran through that in my head, something inside me opened. I wanted to slam it shut, but I had a feeling that would only make it worse, so I just gave in. The face plant episode had made it real, and I had a clearer idea (just enough of a better inkling) of what was ahead. I took a breather and relaxed after that.
The second time was today. My super sister Rita was representing the “Lower 48” at my niece Evelyn’s first communion yesterday. My other super sister Eileen lives in Anchorage, AK, married to Luke the Librarian (yeah, half our sibling partners are librarians, nothing overdue in this family). Rita had sent me a recording of Evelyn reading some of the petitions, a moment in the Catholic mass when the congregation makes their timely requests for Divine Intercession. In her white dress, standing on platform so she could reach the microphone at the speaker’s dais, she said in her child’s voice, “For all the sick, especially Uncle John, that they feel better soon.” Lord, just writing this now is making me cry again.
I try to joke about this, but please know I don’t want to make light of the challenges anyone battling cancer (or life’s other pitfalls) endures. It’s crazy scary. It’s okay to laugh, and just as important to cry. One thing that keeps me uplifted are all the well wishes. Please spread those around, you’ve made me more than blessed, and there’s no shortage of homes for those that don’t quite have the media-driven public profile I do. Appreciate you. Stay well.
LIGHT GREMLINS, MY NEW B(EARTH) DAY AND THE REAL FIGHT (4/21): Had a bout with nausea Wednesday evening, which took a hit to the appetite, but now it’s really fatigue settling in, which means a lot of laying around catching cat naps. Last 2 nights, they gave me a good mix that knocked me out, but almost at the stroke of midnight this morning the gremlins struck. I was just snoozing off when every light in my room turned on, full blast. In a hospital room, there’s nary an unlit corner. Startled back to wakefulness, I got up to hit the light switches while trying to figure out who would be pranking me. Retaliation for the roller skate initiative, spotting doorways to the medical-industrial complex? The light buttons in the room didn’t work. At all. Stepping into the hallway, I walked down and every room was completely lit up. Nurse came out and said that was true for every room on every floor in the hospital. Ugh. QLI saves the day with the sleep mask they put in my recovery gift bag. Never used one, never thought I would, but couldn’t have been happier to shut out that glare. The lights are still a work in progress as I type this 13 hours later.
From 10:30-11:30 they dropped 4 bags of my brother’s bone marrow stem cells in me through my ports. If you look closely, you can see them looking like tiny grains of sand…
So today, Day 0 of my treatment plan, starts a process whereby my body battles the lingering effects of chemo/radiation (that’s the worst and it can get hairy) while those stem cells find my bones and become my new bone marrow—a process called engraftment. I’ll probably be receiving some blood transfusions and even more platelet transfusions. Apparently red blood cells can last awhile, whereas platelets have a much shorter shelf life. All the time staying hyper-vigilant for any signs of infection. In the next week the lingering impacts of chemo/radiation mean I don’t have an immune system.
Which leads me to the current tragedy…Lori’s come down with a good head cold, so she can’t see me. Mom is picking up her half of the supply run, but just to be in Lori’s presence would be a boon. Ever the care-taker, I know the absence is hard. When her symptoms are gone, she’s cleared, so throw some prayers, well-wishes her way for the both of us, please.
Finally, I wanted to share some thoughts on what I’ve been watching and how we should all not let the real fight happening now slip from our radars. I’m talking about Ukraine.
Driven by curiosity for this brave soul, professionally an actor/producer, who could lead his country against a fading global superpower, inspire the stiffest resistance and so capture the world’s attention, I decided to start watching the comedy series he created and starred in — Servant of the People on Netflix.
From the intro music on, it’s so very well put together, great cast, and once you get the POV, hilarious. There’s so much foreshadowing it’s eerie. They even consider a pandemic to divert the public’s attention and to give just one thing away … whenever confronted by angry legislators fighting or mobs protesting, when you can’t get a word in, Zelensky will shout some variation of “Putin has been deposed” and everyone freezes in shock, a captive audience. Sure the Kremlin didn’t like that poke.
More than anything you see Zelensky in his natural element and you realize how some just rise to the occasion.
When I paired that with the documentary Winter on Fire: Ukraine’s Fight for Freedom (same channel) covering the Maidan Revolution, where students first protested, leading to a nationwide revolt and the end of the most recent Russian puppet leadership, my love and appreciation for what the Ukranian people are doing became overwhelming. Two things to share from that: 1) The protesters’ common refrain was “Glory to Ukraine, Glory to the Heroes”. The love of country stood out, but also the recognition it took brave souls, heroes all of them, to protect that. 2) SPOILER ALERT: As things head to the brink in the standoff between the regime and the people, opposition politicians worked to negotiate terms for slow change. The students especially refused and their threats turned out to be catalyst for regime change the very next day.
It’s gonna cost us all something to finally support a clear good vs evil fight, but you can’t put a price on freedom, anywhere. Please help Ukraine however you can. I trust the list organized by Vitaliy Katsenelson, former Russian, next-gen Warren Buffett, maintained here. Vitaliy will be in Omaha for Berkshire this weekend, catch him if you can.
GOOD GUMMIES (4/20): Had to, not just because of the date, but because it’s true — gummies help. Really starting to feel the side effects from chemo/radiation today, so keeping this brief. Might be MIA for a few after this. Some other wins: 1) got internet tv going (roku), but that requires an actual tv remote (not a hospital bed speaker remote) with a source button, which apparently are fairly rare, so I might become back up TV IT guy for my floor (or the building) if word gets out. Feeling some serious veg time coming on, so good timing.
BACK TO THE BEGINNING (4/19): Still feeling okay, so took today, now day -3, to get the back story initially written, first draft style. To keep with the overall timeline, you can find that at the very bottom of this page or click here.
RESURRECTION REFLECTIONS AND THE EARLY REPORT (4/17): Happy Easter, Passover and Ramadan! As I look ahead to my own rebirth (that’s what they call it) with new bone marrow from my brother, I just want to send thanks and love to everyone that has been sending their own love, prayers and well wishes. It’s an overwhelming feeling of support that helps the spirits tremendously. Hope everyone gets some good time with family and friends today.
No word of an Easter egg hunt on my hospital floor, despite my off-handed comments (walking by the nurses’ stations) that I’m sure CHI would be doing one (I mean given their Easter billboards and all). But I have to be cautious. With this group, they’re not afraid to go extraordinary, so I should be careful what I ask for. I’ve got plenty of blessings, so definitely not complaining.
Doing fairly well these first few days. Turns out side effects usually show up about a week in for most, so hopefully I have the same, smoother road to Friday’s transplant. Things could change quickly and after that it’s anyone’s guess. Taking the “feeling okay, if tired” while I can.
The roller-skates-for-patients initiative is on hold, despite the fact that the floors are perfect for it, they want you to keep moving and just about everything is on wheels here. However, I was able to explore the campus more on foot these last few days as my blood levels have stayed okay. It’s a sprawling maze to be investigated. I was able to give Lori a tour of the 4 gardens I know of on campus – Leslie, Cafe, Healing and Rooftop – though given this cold Spring, not much to see yet. My original goal, touring with my mom, was to cross 42nd Street indoors to the new buildings – Davis, Lauritzen, Lozier, Truhlsen – a veritable skywalk cluster of new architecture (the new east campus?). That, however, like I’m finding out just about everywhere I turn, requires a badge. Apparently, despite my short-term residency, I am not yet entitled to one.
Despite this barrier, I believe I’ve seen signs of the medical-industrial complex. For instance, where I’m staying in the Werner Hospital, at the end of the hallways where the elevators are on every floor are a pair of innocuous, unassuming doors that appear like they would go just about nowhere. Quite a few have generic titles, like “Research” and “Administration”. One is even titled a “suite” with another hospital. However, if you peer through the glass and look around, you realize this is its own entire building with complete floors, probably almost as big as the hospital itself. Oh, and you can’t get on the rooftop of the hospital without a badge. Alot of good that will do me if Saddle Creek floods out of control.
A badge, even a maintenance one with all access would be okay, along with a legitimate (not guest access, story for another day) internet login and internet TV are now my top priorities.
One big win and an insider’s tip . . . I’m used to sleeping on a fairly firm mattress. Hospital beds (in this case the Hill-Rom VersaCare model) have air mattresses designed to sink and adjust to your form to prevent bed sores, caused by being in bed for days. Since I’m very mobile, it’s been an unnecessary feature and one that really hampers my sleep. I just can’t get comfortable as my mattress keeps sinking around me. Nurse K figured out if we let the bed get to full inflation, then unplugged the power and the controller at exactly the same time, the bed would stay inflated and be as close to a normal mattress as it could be. That and my pillows from home, and a great blanket from QLI, have done wonders for the 4-hour sleep bursts I get between “vitals” (measuring blood pressure, pulse, oxygen and temperature) and meds.
Today is also an important anniversary. April 17th is the 18th anniversary of my first date with Lori – a moment that would change my life. We’d known each other a couple of years, but had other partners when we originally met. Have to admit when I did see her for the first time, it felt like getting hit by a thunderbolt, but being married, she was all off limits. It was later in Spring of 2004, at one of the earliest Jazzwholes happy hour shows at the Ranch Bowl, then just under new (and it’s last) management, I found out she was available, in classic her fashion too, with a dash of sailor talk. The room started to spin and I had my typical response when faced with the opportunity to further engage what I thought was a smart, passionate, beautiful woman that had really, really struck me (it’s only happened a few times in my life) – I ran away. That’s a mix of adolescent ingrained stage fright and the frustrations of dating while running a business you love and that doesn’t give you much of a personal life, especially at that time, when we had just retaken The Reader and purchased El Perico. I wasn’t looking to start any relationships, because almost all of the recent ones had run aground on my schedule and attention span, not exactly fair to a future partner.
She broke the silence after seeing The Reader’s April Fool’s Day issue (a laugh always does it) and invited me to Tim Kaldahl’s Marlon Perkins Under Glass, another original, local premier at the Shelterbelt Theater. After a delightful dinner at Espana in Benson and a drink downtown, I promptly made a fool of myself at the play by not parking properly and being that guy during intermission that has to move his car after a big announcement to the whole audience. Drinks after and we talked late. I didn’t get a first kiss, but the energy was magnetic, the chemistry was there. The rest, as they say, is history, though it’s her patience and wisdom, seeing things I couldn’t or wouldn’t, that solidified things, especially as I was navigating some of my most turbulent publishing years.
It really does seem like yesterday, and though we haven’t exchanged traditional vows, I know she is there for me in everything, especially in this sickness, and that makes me incredibly fortunate. Thank you Sweet Pea for always being the twinkle in my eye, the spring in my step and the wind in my sail, and of late, my personal Nightengale (despite your best Ratched). Love you.
GAME ON, CHECKED IN FOR TRANSPLANT (4/14): With today’s CAT scan confirming that the lung consolidation is further shrinking, I am now officially checked back in to the 7th floor of the Werner Hospital at the Buffett Cancer Center in preparation for starting the transplant process tomorrow — 3 days of chemo and 4 days of radiation (with a some rabbit blood thrown in, story for another day). That puts the start on Good Friday and Passover, and the actual transplant on April 22 — Earth Day. Feeling even better on my dates having missed St. Patrick’s and April Fool’s days for starts. For now, it’s the quiet before the storm starts tomorrow. Appreciate everyone and all the prayers, wishes and thoughts. You make a guy feel really special, thank you! More updates to come.
THE FLEETNESS OF FUNGI MEANS A 2-WEEK DELAY TO TRANSPLANT (3/31): Good news is the mass-like consolidation in the lung is shrinking, now thought likely to be aspergillus (fungal infections are really hard to diagnose, with most tests around 50% accurate. Out of 3 tests, one came back as aspergillus). Also good news (though it feels kind of bad), the Infectious Disease and Oncology teams think, with my cancer currently under control, that they want to continue to treat the lung infection for 2 more weeks (did I mention fungal infections are slow), thus pushing the start of the transplant procedure to April 14. Best news is I’ll be at home, though continuing to isolate, and plan to work some light duty. I can’t say enough about how much my partner, my brother, my friends and my colleagues have all stepped up to handle things I used to do every day. It’s very disconcerting for me not to have a long list of things I should be getting done, I love what I do so it rarely seems like work, but on the other hand it is incredibly reassuring to see what a team I have and to know things will be alright when I’m really out, i.e. when the transplant starts. It’s really helped me pace myself and get my head and affairs in order. Apologies for being the boy that cried BMT/SCT-wolf, so don’t expect any more predictions until I’m actually checked in and we’re ready to go. I expect not to post again until closer to April 14th. Hope these updates are helpful.
A RALLY BEFORE THE REAL RODEO (3/23): Going home this afternoon and resetting the start of transplant. Tentative word is to redo the chest scan on March 31 and if things looks good, check back in to the hospital that same day, which probably means an April 1 start for the 7-day chemo/radiation regime. Somehow that day feels more fitting for me. The as-yet-diganosed-lung-consolidation is not aspergillus, one of a few Mo Valley fungi, and other infections are being ruled out, so the current course of treatment means I can self-administer my anti-fungals and anti-bacterials at home. I actually have a peek of an immune system returning with some elevation in my neutrophils. Quite the test run, but eager to be home, if even for only a short while.
MY STUMBLE MIGHT BE A FACE PLANT ON THE WAY TO A TRANSPLANT (3/20): Today was supposed to be my 3rd and final day of bone marrow eradication chemo, followed by full body irradiation and then the big day – day 0 it’s called – transplantation of my brother’s stem cells. That’s the real show. An unknown and possibly lingering, very minor grade infection took advantage of my initial round of conditioning chemo to poke its head up, putting me in the hospital on Sunday and since exposing a few other exposures in my immunity armor.
IMPORTANT MESSAGE: Due to my single biggest threat (and patients like me, in my area of the hospital) being even the most simple and common infection, PLANTS AND FLOWERS ARE FORBIDDEN, and other physical objects in general, including cards, food, anything, ESPECIALLY PERSONAL VISITS, etc. bring some outside chance of infection. Bacteria and fungi are my two most common threats. Think of me as the Boy in the Bubble for awhile, especially after the transplant.
Based on the early returns, and there’s more coming this week, everything is manageable to transplant except the pneumonia-like consolidation, most likely a fungal infection prevalent in the Missouri River valley, in my very top right lung. It was caught on the tail end of a throat scan. Fungal infections are slow, so slow to treat/reduce and if its not deemed a threat to transplant (I have no symptoms, cough, feeling in the area, shortness of breath), then hopefully we proceed this week.
The more likely/safer option, while my cancer is still relatively under control, is to give the as-yet-diganosed-lung-consolidation at least 3 weeks to see how far it can be reduced. That would mean I’m coming home soon probably and the transplant would be rescheduled for later April.
At this point, to poorly borrow one of America’s greatest writers, “the threat of my transplant have been greatly exaggerated.” More to come…
FROM TOP TO BOTTOM (3/19): Procedure went smoothly, my rolling bed took its place in the well-ordered line that is pre-ops to operating room, where your doctors converge, start talking details and then you’re stone cold out, waking up in post-ops. Little worn from the wear. Finally could eat and drink, got that in and slept fairly well. Just got one more procedure scheduled looking at the other end this afternoon. Laying low, recovering. No food or drink until this afternoon.
Long short update, caught something, not exactly sure what (none of the usual suspects), but power anti-bacterial/fungi brew did the trick. Fever gone for now.
All that managed, transplant timing next.
BUT MIGHT NOT BE PREPARED TO LAND (3/17)
Happy St. Patrick’s Day. I can see Omaha’s Leavenworth Street, a popular bar crawl from my room. Still crawling here. Today was supposed to be my initial check-in date, but marks my 5th day.
The throat pain started stabilizing yesterday and they lined me up to get a throat CAT scan on the larger hospital, Clarkson, which is just a small underground jaunt. Even on these back roads it was busy and as big a cross-section of Nebraska as you could ever see. I got a few surprised looks from the techs for making the journey on foot, by my own speed, so I count those as extra laps in the recovery marathon challenge (more on that later, I can literally earn a medal).
A battle-hardened (and bed-run-scratched) massive donut spun like a massive gyro as the specimen bed, me on it, slid in and out of it, variously breathing and holding my breath. That produced a clearer picture of my throat, but also grabbed a snapshot of the top of my lungs, which had signs of something, might be, grrr, pneumonia related.
They have 4 teams working on me — Infectious Disease, EENT (with Dermatology), Pulmonary and, of course, Oncology. With my blood levels still so slow and being so immuno-compromised, the goal is to get me in the best shape possible before the transplant process starts (3 days of chemo, 4 days of radiation). While green beer was the order of the day for most, I was getting platelet and blood transfusions, along with a steady drip of anti-bacterial and anti-virals, but no food or drink. Blood and platelet transfusions seem to exhaust me a little.
Next step after the scans was a probe. They really need to know what they dealing with and that means a clear system. The 4 teams finally settled on a Friday afternoon biopsy, when pulmonary and EENT can team up so it’s only one procedure. That was a big win. Later that night a Dr. Dowdall from the EENT team visit to personally explain why my sore throat was so unusual. Suffice to say she had only heard of a couple of other examples in her career and I had been her homework the last 24 hours. My type of sore shared more similarities with dermatological outbreaks, which means a different treatment approach. Guess I don’t know if I’m inside or out, but this visit and her personal guarantee to make sure my specimen slides were delivered really did make me think of extraordinary care.
Apologies if you’ve texted, called or emailed and I haven’t responded. Has actually been pretty busy (not a good thing), I’m still trying to wrap up a few loose ends on the list for this last week, and I’m trying to conserve energy and absorb the current challenge and what that means for the original reason I’m here. Friday afternoon’s biopsy should be real instructive.
The fight for roller skates also continues, but I’m also adding fair distribution of floor microwaves and continuous-drip-strikes-for-clean-shirts to the list.
WE’RE COMING IN EARLY (3/15)
Well, she probably did it again. There’s a disturbing trend here, me thinking it’s not that bad, her finally ignoring that and because of it, I couldn’t be more blessed. Fortunately she’s got some deep behavioral knowledge, masterful instincts, a solid set of peepers and enough sense not to listen to me.
By the way, I’m real fortunate to have a little brother that gives great stem cells. They were hoping for 5-6kg and on Feb. 28 he delivered (or we harvested) over 11kg of salmony pink stem cells. The staff seemed universal about their very beauty. I kid you not. I’ve never known Ben to sit still for 10 minutes, much less 4-1/2 hours.
The original check-in date for the bone marrow/stem cell transplant was March 17, but as I’ve had this growing resistance to the pill treatments, earlier chemotherapy infusions were in order to better minimize the cancerous cells, before the transplant, when the goal is complete eradication. So five days of a chemo with milder side effects, Decitabine, were ordered up and every morning starting Valentine’s Day, for about an hour and a half, I’d hang out at what’s called the Treatment Center, hooked up to an IV machine. Even as a milder chemo, it’s toxic enough they don’t make it until you get there and the nurses put on extra protective layers. The timing interfered with some morning meetings, but for the most part I’d be sitting there typing away or talking. I didn’t feel normal, but I didn’t exactly feel weird either. I sorta lost my appetite, but had no problems putting food down if it was in front of me.
The first 5 days made a dent, but not what we were hoping, so another 5 days was ordered up. That might have worked a little too well, my platelets, white blood counts, hemoglobin and other important blood indicators were dropping too low.
The week of March 7 (apparently now universal Spring Break Week for Omaha, maybe America) was going to be a week of tying up loose ends, hospital education visits and finding a lot of quality together time with my partner. By Tuesday, March 8 I went in for a platelet transfusion. A little itch started developing my throat. That shortly developed into a sore throat that made it difficult to swallow and to get a good nights rest, so that by the weekend I was doing nothing except looking for a little shut eye, trying to conserve energy for a work sprint before my St. Patrick’s Day check-in. My temperature was maybe 99 degrees, so not bad enough.
She tended to me, gave me tons of space (which I really like), but by Sunday she put her foot down. My temperature spiked to 101-ish and we headed in. We both knew there’s likely no coming back until after the transplant, but trying to cling to the last bit of normalcy I would have in awhile was not worth the risk.
Sunday night through Tuesday morning is a blur of blood and medicine transfusions (they check vitals every hour for blood) and settling into the hospital. This morning at 2:30am-ish the fever broke and so far is staying that way. Taking and eating are still very difficult, but we’ve a regimen down to numb my throat and get some food down. The staff has been awesome. Please trust that, as I’m able, I’ll post here with updates. For now, and probably the near future, phone calls, visits, food, etc. would be wasted and I’m trying to stay fully focused on navigating this, launching a movement to get roller skates for every patient in the Special Care Unit and preparing for the battle head. Take care of each other.
The initial post (2/16)
From winning the leukemia lottery to a much longer shot: Got something to share. Long story short, I was diagnosed with chronic myeloid leukemia (CML) in November 2020. Possibly the most treatable blood cancer, it was like winning the leukemia lottery (of sorts). There were plenty of medications (TKIs) working, and as long as I took those, should lead a normal life. That changed around Nov 2021 when I was diagnosed with the “dreaded” t315i mutation, meaning I’m resistant to all TKIs, except maybe a couple of the most recent ones. Those two aren’t doing the job, so I’ll be heading to a bone marrow/stem cell transplant at Nebraska Medicine on March 17. The support has been immensely humbling (so lucky to have my partner, family and friends), the medical staff is top notch, and I hope to write about this journey for anyone wondering. I’m not in any pain yet, just navigating annoying side effects from the medication for now. Some important lessons learned so far: 1) LISTEN TO YOUR PARTNER (she already saved my life once); 2) Trust your circle, they got your back; 3) Enjoy now, don’t wait ; ) UPDATE: WOW! People been asking, so wanted to get it out, but THAT’S A WHOLE LOTTA LOVE THERE and I feel super uplifted. THANK YOU! Also, totally remiss not to thank Ben Heaston for donating his stem cells. Little brother going to save my life! More to come . . .
My CML Cancer Story (Don’t Call It A Journey Unless You Get A Good Trip Out of It)
Cancer can be fiendish. It first personally touched me in my Dad’s laugh one day at lunch July of 2019.
My parents have, and we were raised with, a bit of wanderlust. They love to travel. Fitting they had met and their 3-month romance started in Vietnam – a German/Irish Catholic Army JAG Captain from Omaha and a German Jewish American Red Cross Donut Dollie from Baltimore – in the middle of a war. After a 20-year Army career, they came to Omaha, where my dad’s family dates back to the late 1800s. After work-related stints in Denver and Sioux Falls, they’d returned to Omaha in 2017, mostly retired, closer to grandkids and old friends – that loved to travel. Oh yeah, and there were kids (okay one) without any of their own kids (aka grandkids) that was around.
So catching them both for lunch when they were in town was a bit of a highlight for Lori and I. They were constant hosts, so always good when we could take them out and treat. As we listened to their latest journeys, I noticed my dad seemed a little punchy. He wasn’t a drinker (at all), but he seemed to have a slight lean and he was exceedingly entertained by my wise aleck comments. I could almost always make him smile, usually chuckle, but getting this many laughs so easily stood out to me. Maybe I was on a joke roll, my delivery lining up perfectly? Unsure I had finally achieved some comedic competency (my partner keeps that score real), we were leaving that week for a trip to Boulder and would see them the following week for a lunch at the Press Club.
It was there that Lori noticed too. We talked to Mom, who had been worrying about it nonstop but was getting mixed signals, and she quickly moved to get him into the doctor, just to be safe. Things started moving really fast at that point. A visit to the GP led to scans that showed stage 4 brain cancer – a large mass in his frontal lobe – and surgery was quickly scheduled. There we were, my mom and Omaha siblings, Alaska sister on speaker phone, in a consulting suite at Methodist talking to a neurosurgeon afterwards. The procedure went well, wasn’t complete and therapy now moved to radiation, chemo, and all that going well enough, a special maintenance device my dad called the tin foil hat. He still kept his sense of humor.
Little did I know that at about that same time, in my bone marrow genes, my chromosome 22 was swapping a small amount of genetic material with chromosome 9, creating a mutant gene that’s called the Philadelphia chromosome. This mutation gene creates a mutant protein called Bcr/ABl, an enzyme that triggers a process where I’m endlessly creating white blood cells – specifically ones called myeloids.
Being a pretty big guy naturally, my dad was always a little touchy about his weight. When I first started joining him and my mom on doctor appointments, I would teasingly sneak up behind and check the scale when they always weighed him at check in. He’d bat me away then and later, goodnaturedly poke me in the stomach in the elevator for spilling over my belt.
The first signs something was up was this thinning around my neck and gradual muscle loss. Starting in October, I lost almost 30 pounds by December, with very little change in diet and absolutely no effort to start any exercising. I was spending as much time as I could with my dad, including fairly frequent visits to the daily mass at Boys Town, and I figured it was a mix of my reacting to his mortality triggering maybe my own mortality genes to get me to a more sustainable weight long-term. I called it my “Hecht gene,” actualizing in honor of the skinny frame my mom and her dad (Opa) carried into their later years. That said, Lori wasn’t having any self-diagnosis and I went in to the doctor early January 2020 (I partly waited because there was finally a bronze plan on the exchange that included my longtime GP in-network). My blood levels were still okay then, the first clear indicator of the disease, so without any clues, a colonoscopy was scheduled for late March 2020.
We lost dad at the end of February. At his memorial service, a dear friend and brilliant writer/humorist Kyle Tonniges (he wrote most of our April Fools Day issue, so in some way I credit him for introducing me to Lori) who had survived his own brain cancer came up to me and others, alarmed at my thin appearance. My suit was really hanging off of me. He insisted I get back to the doctor and ask that they dig deeper. Of course, the world shut down two weeks later. Most tragically, we lost Kyle that fall to the sudden onset of lung cancer, during COVID, when we couldn’t see him.
We finally got to the colonoscopy by July, nothing really showing. My weight had stabilized, so it didn’t seem to be as big a concern. Looking back, I was having some emotional swings that time, but who wasn’t? It’s a worldwide pandemic, local media (our business especially) was pivoting nonstop, I was board president for my trade association and scared we wouldn’t have any members left when it was done. I seem to do well in those types of situations, so plenty to stay focused on.
That takes me to October 2020, watching TV with Lori when her casual hand on my abdomen starts poking. “Your stomach is really hard,” she says. “Yeah, I noticed that a month or so ago, but I’m not really sure what my stomach should feel like”. She rolls her eyes, “Not that hard, you’re going back to the doctor.” So early November 2020 on a Friday I head back in, and yes, everyone agrees my abdomen is too hard. That leads to a CAT scan and signs of an enlarged liver and spleen, not good. They’re being overwhelmed trying to filter something. Concerned, they let me go home while tests were being run, with cautions about heading to the emergency room if I felt anything.
I received three calls very early the next morning, between midnight and 12:15 on Saturday. The doctor on-call at the clinic had my blood results back and wanted me to call immediately. Seeing the messages the next morning, I promptly returned his call and he asked me to come back to the clinic. When I arrived, a few more doctors showed up. “How you feeling,” they ask, looking at me intently. “Fine, I think,” I reply, not having anything specifically bothering me. “Well, you shouldn’t,” they replied, “your white blood cells are off the charts. Something is going on and we need to run more tests.” I left only after promising that I would immediately go to the emergency room if I felt bad.
That afternoon, my GP called to tell me it appeared I had some kind of leukemia, my prognosis looked excellent and I was seeing the oncologist first thing on Monday morning. That’s when I learned that I most likely had chronic myeloid leukemia (CML), but that a genetic test would confirm it later that week, which it did.
CML is most often measured by the prevalance of the Bcr/Abl mutation. When I was first diagnosed, that number was 95%. Myeloids were crowding out my bloodstream and had already eaten into my extra weight. They immediately gave me some medications to wipe out my overabundance of white blood cells, and it was like a fog lifted. I realized I was a horrible judge of my own fatigue. I had gradually been wearing down over a year and a half, but so focused on mental pursuits, I wasn’t listening to (or even looking for) my physical failings.
The mutant enzyme Bcr/Abl is a type of tyronese kinase, and there’s a whole class of drugs called tyronese kinase inhibitors (TKIs) that have been developed to treat it. The oldest, and now available as a generic, is Gleevec (Imatinib, all the TKIs end with an -ib for their formal names). Calling it into my local pharmacy, I started to learn about health insurance formularies and specialty pharmacies. This wasn’t normally kept in stock and required significant insurance pre-authorization paperwork. I didn’t want to wait, so figuring there’s a generic, offered to pay the first month out-of-pocket. That would cost $14,000. With insurance, it was $600/month, but I was able to buy it direct online for $80/month. Modern healthcare, but a price I could deal with to stay alive, certainly. It really did feel like winning the leukemia lottery.
The TKI treatment has a timeline showing green-yellow-red for efficacy, where your Bcr/Abl is measured every 3 months. I went from 95% to 18% in the first 3 months, that put me in the yellow, green was 10%. Rather than take my chance with a newer drug that didn’t have a generic and available so easily, I doubled down on my gleevec dosage, so it’s now $160/month. That got me to 3% the next quarter, but still in the yellow, I should’ve been at 1% for green. Still some progress, so we ride it out. I’m starting to have more side effects on the double dosage, but it’s still manageable, if annoying. The next quarter my Bcr/Abl jumps to 5% and now we’re looking at another drug and some more tests.
I’ll never forget the sinking feeling I had when a test result titled “Misc Labcorp Test” shows up in my OneChart app on October 5. “Two mutations were detected within the BCR-ABL 1 kinase domain . . . Interpretation: A nucleotide change . . . substitution at position 315 (T315i) was detected . . this mutation is reported to be associated with resistance to imatinib that does not respond to higher drug doses. In addition, no kinase inhibitor has been developed that is active against cells with the T315i mutation.”
No TKIs? That’s the whole defense here. This couldn’t be good and my oncologist confirmed. “You have the ‘dreaded’ mutation,” he told me. One thing I’m learning about cancer, which is really just a mutation, is that the more mutations that develop, the faster it grows and the harder it becomes to fight. I’ve now become a candidate for a bone marrow stem cell transplant, which means heading to Nebraska Medicine, except later that month, on October 29, the FDA approved a new drug, Scemblix, that was having success with T315i and where other TKIs had failed.
So we knew in December there was a real possibility I would be heading to transplant and the team at NM has been awesome, but I so wanted to believe Scemblix would save the day. There’s no coming back from a transplant, it’s not reversible. By late January, we knew that wasn’t going to happen and we began to prepare for what transplant would entail, landing on March 14 by mid-February.
I’d like to give a quick shot-out to our friends at QLI and their telerehabiltation partner Kintinu, the rehabilitation experts who put together the most awesome recovery package for me but also gave me a card that speaks to so much of this and where I borrowed today’s subtitle about “the journey.” Their organization, methodology and work gives me inspiration and it’s been an honor to work with them. Thanks for following.