Love the climb

This morning in my PWR spin class over at Lifetime fitness, my class instructor, Melissa (aka Dr. Z, aka Melissa Zebrasky, doctor of acupuncture and Chinese medicine – more about her when I've had my first session next week!) scheduled a climb workout. How and why would you do a "climb" on an indoor bike?

If you're not into power cycling workouts, this might require a bit of explanation: Power cycling is about training for cycling technique efficiency. Short of bike aerodynamics and the weather, only two things affect how fast and how long you can ride your bike are your pedaling cadence (rotations per minute) and the amount of effort that goes into each pedal stroke. So to pedal harder and faster, you have to develop good technique so that you don't waste energy on things that detract from the effort of producing speed.  ANYHOO...today we did a climb workout – that is, a slow-cadence session where we tried to increase our power output over several intervals, while maintaining slow, sustained pedal cadences of 70, 60 and lastly 50 rpm.  Done indoors on a stationary bike, this workout simulates a long hill-climb. Most people I know hate uphill climbs on their bikes. So most of the participants groaned in dismay when they saw the workout board in class this morning. Not me.

I remember 22 years ago, when I first began cycling, my brother told me that in order to really fall in love with cycling you had to alter your mindset and fall in love with hill climbing. There are few simple pleasures in life so enjoyable as riding a bike DOWNHILL. But as with all things in life, in order to go downhill you have to first go uphill. So, unless you live in Illinois, Holland, or Kansas, you need to know that 50% of your time on a bike will be going uphill, and if you don't enjoy hill climbing, you'll never really enjoy cycling. Almost from day one on the bike, I began to train my mind to love the UPHILL; to love the climb.

There's a strong inverse correlation between how difficult a cycling hill climb is, and your enjoyment of attaining the summit and the long downhill coast on the back side of the climb. The harder the climb the better the downhill run. There is a great satisfaction to achieving something difficult. I think this one of life's great paradoxes. The harder a thing is to achieve, the greater the satisfaction and enjoyment and glow in the achievement of it. 

I haven't had the chance to try my legs on any of Europe's iconic cycling climbs. Col de Tourmalet, Passo dello Stelvio, Mt Ventoux, and Alpe d'Huez are on my bucket list among others and remain unconquered by me. When we lived in Arizona, I used to occasionally go out and test myself on 9-Mile Hill –  a long, straight, 2.5%-grade slog between Rio Verde and Reata Pass in Scottsdale, with a total elevation gain of only 1,100 ft elevation gain – that used to feel something akin to Chinese water torture. But even the monotony of that climb had a wonderful reward in the end as I'd speed past the desert beauty of the Four Seasons resort, and Pinnacle Peak Park on the descent. My most "epic" climb ever was Mt. Constitution in the San Juan Islands that I did as part of a family cycling vacation. It's a 5-mile 7.2%-grade ride with almost 2,000 ft of elevation gain that rises up at the end of a 30-mile rolling hill "warm-up". I recall my mind playing tricks with me on that ride. Some parts of the climb are less steep and almost seem to be going downhill. Those parts are called false flats. They lead you to believe that your suffering is over, only to crush your spirit as you round a bend and begin another relentless uphill stretch. But epic climbs are like that; they require strength of mind and body, as well as a can-do attitude. Mt. Constitution rewards you with solitude – I never saw another cyclist or car that entire ride – plus amazing views of the San Juan de Fuca Straits and snow-capped Mt Baker in the offing. It's the combination of the effort, the pain, the ups and downs, and the eventual summit that make the hills in cycling so wonderful.  

View from the top of Mt. Constitution

Before my diagnosis, we were actively planning a trip back to Italy to go cycling with friends around Lake Como and up and over the Madonna del Ghisallo – a 6-mile, 1,800 ft climb with 6% average grade with stretches exceeding 14%. Of course, this climb would come after having ridden 100 hilly miles around the lake. The climb would be tough and beautiful, but the real reward would be getting to see the Madonna's chapel at the top: a shrine to cycling's most celebrated men and women. Not a bad introduction to epic European climbs. 

Madonna del Ghisallo shrine

I have a big climb ahead of me this year. It won't be on my bike. In fact, once this transplant takes place, I probably won't be on my bike for at least 6 months afterwards – a thought that makes me scared and sad. I've heard and read that like an epic climb, the transplant journey will be extremely difficult. It will test my resolve both physically and spiritually. There will be ups and downs along the way. There will be false flats where I will believe that the pain and suffering are over, only to have it resume again. I will want to quit, get off my bike, and maybe even turn the bike around and just abandon the quest. 

But if I train properly beforehand, if I get my strength and nutrition right, if I prepare myself mentally, maybe I'll get to the summit, and find a reward, however unexpected it might be. Or maybe the reward will simply be that I was able to reach the summit after a long, hard climb. 

Bring it on! This is going to be epic. 

The Martian

One of my favorite movies in recent years is The Martian with Matt Damon. In the film, Damon's character is part of a team of astronauts that are exploring the planet Mars. Through a series of unfortunate events, he ends up getting stranded alone on the planet. He quickly comes to the realization that his situation is dire with ridiculously low odds of survival. But instead of losing himself to despair, he decides to work the problem and get himself out of his situation. 

Here's a quick clip:

In the end – spoiler alert! – he survives and lives to share his experiences with others. 

So I'm taking The Martian as my inspiration movie, and this is my motto for 2024: "Work the Problem. We're Gonna Science the Shit Outta This!" I've even written it down in the front piece of my personal notebook/journal this year:

My goal is to learn everything I possibly can about this disease, and do everything I can to beat the odds of it taking me down.

Karla and I have already started down the path. We're consulting with every specialist we can. We're getting second opinions on everything. We're reading everything we can get our hands on. And we're formulating our plan for the best possible outcome.

Back in the day when I fancied myself some kind of competitive athlete, I used to run 10k's, half-marathons, and marathons. I did long-distance road bike races and solo time-trials several times a year. OK...so never mind that I was never any good or truly competitive, but I approached my events and training seriously and with purpose. I was out mostly to beat myself. In any case, my approach to success was to fix a date on the calendar for a given event and develop a training plan for the weeks ahead of it so that I was in the best condition to perform on the event date.

I'm going to approach my transplant like I used to approach my athletic events. Even before we're close to having a date at Froedert, and beyond the doctors and nurses who will be part of the transplant team, we're lining up our own prep squad with a physical therapist, nutritionist, and a Doctor of Chinese medicine, who is a master of acupuncture, Qi Gong, herbalism, and meditation. This team is going to engineer my prep leading up to my hospitalization date. I plan to walk into the transplant wing as the specimen of a 62-year old male – emotionally, spiritually, and physically fit. 

Hey John – can you use my stem cells?

I'm overwhelmed with the number of people who have said to us that they'd be willing to donate their cells if I could use them. It's a very kind and selfless gesture, and makes us feel so fortunate to have such caring family and friends.

Sadly, the chance that your stem cells would be a good match for me is almost zero. The biochemistry of stem cell matching is ... um ...complicated, to say the least. What I understand is that each of us has a total of 12 HLA's (Human Leukocyte Antigens) in our genetic makeup; you get 6 from your mom and 6 from your dad. HLA's are cellular surface molecules that regulate our immune system and antibodies. The transplant team will be looking for a donor who can get as close as possible to a 12 HLA match. I'm told that 8-10 would be amazing. The minimum number for a successful transplant would be 6. So the perfect match would be if I had an identical twin brother – which I don't have. But I do have three siblings and (as far as we know) all of us have the same two parental gene contributors, so they represent the easiest source to have HLA's like mine. (Unless of course, the rumors that my youngest brother was adopted are true...) Statistically, they have a 25% chance of being the match. Clinically, about 70% of patients end up with non-related donors.

If my sibs don't match, the team will turn to the international registry of stem cell donors. There are over 15 million people who have signed up and are willing to donate their cells if needed. My transplant doc said that it's most likely that we'll find a match from the registry and that person would very likely come from western or northern Europe, because what's where my family's genetic ancestry originates; I'm a white caucasian male whose ancestors came from Ireland, England, Austria, and France. 

If they don't find a match on the registry, then the last resort will be to turn to one of my children, as they, by virtue of having 1/2 of their HLA's come from me, will have at least 6 of the 12 HLA's that I need. Not optimal, but better than nothing, I suppose. 

So you probably can't help me directly. But if you're moved to help someone who is diagnosed with leukemia or other blood disorder, you can register and perhaps save someone else's life. The National Marrow Donor Program (NMDP) is always looking for potential donors and financial help. You can go to BETHEMATCH.ORG to sign up and learn all about it. People ask me what's required to be a donor? There's more to it than this, but basically, you have to be willing, healthy, and under the age of 40. 

But if you meet the qualifications, the process is pretty simple: You sign up. You do a cheek swab with a q-tip, mail it in, and wait for a phone call. If they call you, you get a physical and a blood test, and if everything checks out and your cells are needed, then your commitment extends to about a 30 hours of your time. There's nothing scary about it. They'd simply draw some of your peripheral blood, siphon off the stem cells and then return your blood to you.  

So the search for my match has already begun. Time will tell if and when I'll match. Thanks again for wanting to help. It means the world to us. 

My year of bad diagnoses.

 

As you may have read, December and January were challenging months for us. Between my dad's death, and winding up his affairs, "losing" my job, and waiting for news on tests and biopsies, it was hard to get into the spirit of the holidays, although we did our best to enjoy the time we were able to spend with Henry, Maggie, Jane, my sister, and her family. 

We got our AZ condo put back together and reorganized after the bad flood that wiped us out last July, and then packed up our things to return to WI. This time we drove through Denver for dinner with H and Mags, and then on to Chicago, where we had scheduled a stop at the Prenuvo clinic for a full body MRI. 

You may have heard of Prenuvo in the news. It's one of a handful of companies that's taking advanced MRI into a new market: Luxury Wellness. The idea behind the Prenuvo is: why wait until something happens to your health, when you can catch problems before they become a problem. You plunk down $2,500 and they screen you from head to toe using optimized hardware, software, and AI. In just one hour they'll be able to tell you if there's anything wrong with you. The scans can supposedly identify hundreds of potential conditions including all kinds of cancers, solid tumors, potential aneurysms, skeletal degradations, and all kinds of other chronic and acute conditions. There's been some media backlash against these kinds of companies. Because insurance doesn't cover the scan in most situations, they're being decried as healthcare for the rich and famous – lots of celebrities have been comped scans in exchange for them touting the services to their legions of followers. Others have said that the scans return with both false positives and false negatives, meaning they're not foolproof and therefore not a replacement for regular doctor visits and physicals. And yet others have said that doing something like this can send you down a rabbit hole: if something shows up on your scan, it may be benign or it could be something bad, but the scan can't tell you, so you might end up undergoing additional tests or biopsies, which may or may not lead to something. Where does it end? Do we cause ourselves more worry and expense and tie up medical resources that could be used for persons truly in need? 

We decided to do a Prenuvo scan because in the past 12 months I've received 4 different cancer diagnoses. It seems like every time a doctor prodded or poked me, they would find another form of cancer. In 2023 alone I was diagnosed with two basal cell carcinomas (for the 7th and 8th times), one squamous cell carcinoma, prostate cancer, and now most recently, leukemia. This begged the question: if every time we look for cancer, we find it, where are we not looking? What if I also have other cancers in my body? It seemed like the best way to put our mind at rest was to look at everything all at once. Prenuvo was our answer. One concern we had was that there could be some causative correlation between the separate diagnoses that might foreshadow other future diagnoses. Turns out the answer is no. Phew. Bullet dodged.

The good news is that we've received the report, and there's nothing else lurking in my body that we hadn't already identified. It was also nice to receive independent confirmation that there are issues in my prostate and bone marrow. Although the report did not identify what the problems were, they did urge me to visit specialists to identify and treat, if necessary. Interestingly, they did inform me that I have some mild skeletal degradation in my back, and shoulders. I guess that means I'm getting old.

Had we not received the four cancer diagnoses over the past year, we probably would not have sprung for the additional cost of the Prenuvo scan. But we have a little bit of peace of mind knowing there's nothing else that's obviously happening in my body. At this time. 🙄

 

A little more about CMML and Stem Cell Transplants...

 

OK. Last post for a while, and then I'll give it a rest. 

So this is what I've learned about my disease and what I'm going to have to do about it:

What is leukemia?

Leukemia is another combo greek word stemming from leukos,  meaning white, and haima, meaning blood.  There was a German doctor in the 19th century that initially coined the phrase based on a set of illnesses where there was an excess count of white blood cells. 170 years of research has re-defined it in 1,000 different ways. but leukemia is basically a malignant progressive disease where the bone marrow and other blood-forming organs produce increased numbers of immature or abnormal cells, which supress the production of normal blood cells. These cellular imbalances ultimately lead to failure in other critical organs. 

These days, leukemia gets characterized into two kinds: Chronic, which is "slow" moving, and Acute, which is "fast" moving. If you have a choice, go for Chronic. There are four main kinds of leukemia:  Acute Lymphocytic Leukemia (ALL), Acute Myelogenous Leukemia (AML), Chronic Lymphocytic Leukemia (CLL), and Chronic Myelogenous Leukemia (CML). 

So which kind of leukemia do you have?

Within each of those types there are all kinds of subtypes and variations, each with its own set of complexities. My type falls under the CML branch. But it's different. I have CMML which stands for Chronic Myelomonocytic Leukemia. My kind is rare. One hematologist we talked to (who's now retired), said in his 40 years of practice as a blood cancer specialist, he only ever saw one case of CMML. Only 10 people in a million get diagnosed with this. Go figure.

What caused it?

Bad luck. CMML is not hereditary, and to anyone's knowledge is not caused by any prior activity or exposure. My kids won't get it. And nothing about my past would have indicated that I would get this. It's basically a random mutation. 

How bad is it?

Unlike other kinds of cancer, leukemia isn't characterized by tumors or stages. So I don't have stage I or stage IV leukemia. CMML has three levels of progression:, 0, 1, and 2. The levels are determined by the percentage of abnormal cell counts in a given sample. Mine is currently CMML-1. So better than 2 and worse than 0. There are different "prognostic models" used to figure this all out. On a 1-4 scale, my risk of this transforming to acute leukemia is between 2 and 3, depending on which model you use. 

To complicate matters, CMML is marked by certain genetic mutations. I happen to have 5 specific genetic mutations: two mutations of ASXL1, and one each of NRAS, SETBP1 and CBL. These mutations are relevant because they forecast a worse prognosis than for people who don't have them. The ASXL1 mutations are the most worrying part, because they have a tendency to transform the disease from Chronic to Acute. So if there's any urgency to my diagnosis, it's that: we want to head ASXL1 off at the pass and make sure that we kill it before it decides to become acute.

To simplify this, think of the bone marrow as a cell factory. It cranks out 30 billion new cells each and every day. But it's not infallible. Every day, your marrow makes some cells that are just "bad copies"...mutated in some way. Your body is able to deal with those mutations and kill them off without causing any other damage. Happens all day every day in everyone. But in my case, my marrow has developed and decided to accept a few mutated genes that are nasty bad actors that go around screwing up my blood cell balances. The only way to stop this from happening is to kill off my bone marrow and "restart" the factory. Think of it as a "hard reboot", like you might do on your home computer.

Isn't there a medicine for this?

Nope. Because this is such a rare disease, pharmaceutical companies have no incentive to develop new therapies for it. They're focused on curing diseases that are more common and hence more profitable. There are a few targeted therapies that are considered palliative. They've taken drugs that were developed for other illnesses and discovered through trial and error that they are somewhat effective at surpressing the symptoms and slowing the progression of CMML. But it's not curative, and most people that take this approach to treatment die anyway after a few years. There are several clinical trials underway, but each one is really just taking existing meds or combinations of meds to see if they're effective in stopping or slowing the disease. 

Can you be cured? 

Theoretically yes. The only known cure for CMML is to undergo a Stem Cell Transplant (SCT). It's an aggressive treatment, but when it's successful, survivors end up with new bone marrow that shows no signs of disease or malignancy.

Why doesn't everybody with CMML get a SCT? 

Not everybody is eligible for it. You may be too old. Or you may have other "co-morbidities" (diabetes, obesity, heart disease, etc) that would make surviving the process unlikely. So, if you're not a candidate for SCT, then you'd probably choose a targeted therapy approach like hydroxyurea. You'd never be cured, but you might live longer than the median expectation. 

So...what's involved in the Stem Cell Transplant?

1. They determine if I'm a good candidate. So far, the answer is yes. But I will undergo a series of tests to ensure that I'm healthy enough, and that my critical organs are strong enough to withstand the chemo and possible radiation treatments.

2. CMML requires a donor from another body (allogeneic) as opposed to using my own stem cells (autogenous). We'll search for a stem cell donor. We need to find someone whose genetic makeup is sufficiently close to mine, but not identical to mine, who's willing to give up some of their stem cells for me to use. The most likely candidate is one of my siblings – about a 30% chance one of them could be a donor. Failing that, they'll search an international registry of 15 million donors. The most likely candidate will be a young caucasian male from someplace in northern or western Europe. Failing to find a good match in the registry, they'll turn to one of my children, who are both guaranteed to be at least a 50% suitable match. 

3. After a match is found, they schedule the transplant. Two things happen: first, the donor goes to a clinic for about 1 week prior to the transplant. For five or six days they will get injections of a medicine that will boost their body's production of stem cells. At peak stem cell production, they'll siphon off some of their blood from an IV, centrifuge it to separate the stem cells and collect them all in a baggy (picture right).

If that person is indeed in Europe, then someone will hand carry that bag of cells and deliver it to the hospital where I will be waiting to receive them.

Second, while the donor is getting ready to give me their stems, simultaneously here in Milwaukee I'll be admitted into the hospital and will undergo preparations to receive the donation. First, they'll put a "port" into my chest. It's a catheter that simplifies all the subsequent infusions and withdrawals that I will need to have over the subsequent months. Once that's in place, we'll begin an aggressive chemo treatment. In order for the donated stem cells to be able to live in me, they need to kill my bone marrow. So it will be about 5-6 days of chemo sessions. Hopefully that does the job, but if my marrow's not entirely dead, then they'll follow the chemo up with TBI...total body irradiation. Once my marrow is well and dead, then they transplant the donated stem cells into my body. That's called the graft. Functionally it's just another intravenous infusion. 

Call that Week 1. From that point, I'll stay at the hospital in a special antiseptic wing where we'll watch and wait to see what happens. Because the chemo that kills the marrow also kills my immune system, I'll be subject to infection. Even the slightest little infection at this point could kill me. The chemo/radiation combo will also eliminate my platelets, so bumping up against anything will cause extensive bruising, and cuts won't stop bleeding. So my room will be baby-proofed. Rounded soft corners on everything, no sharp objects, nothing that I could possibly cut myself on. My stay at the hospital under close observation and daily testing will last for for 4-6 weeks or until my bone marrow starts producing normalized blood and my immune system begins to redevelop. I'll be able to have visitors, but they'll have to "scrub in" and wear gloves, masks and gowns to come into my room. 

4. Discharge and recovering. After the hospital stay, I get to go home to begin the recuperation process. I'll spend the next 100 days going back to the hospital 2-3x per week for progress and monitoring. I'll be as weak as a newborn baby for probably 2-3 months after the transplant, and then the real fun begins: managing the graft so that my body doesn't reject the cells or vice versa. 

As you can imagine, we're not thrilled with the prospect of having to do this. There are many risks along the way. It will be difficult for me, but perhaps just as difficult for Karla as she'll be needing to care for me as well as her aging parents. Curing the leukemia will not mean that I will absolutely return to a normal pre-leukemia life. The complications and long-term effects of the treatment will likely be with us for the rest of my life. It makes us alternately angry and sad. But short of denying treatment and letting the disease run its course, it's really the only option available to us. As my dad always reminded us, quoting from Mexican President Luis Echeverría, "Arriba y adelante! Seguiremos trabajando!" I think my best translation would be, "Heads up and eyes front! We shall continue the effort!"

Why adventure, John?

 

You may have heard about the Fun Scale. There's Type I Fun where things are fun when you're doing them and fun in retrospect. Think drinking margaritas, skiing on fresh powder, or having sex with someone you love. Type II fun is generally miserable while you're doing it, but enjoyable in retrospect. Think running a marathon, hiking through the Grand Canyon, or maybe for women, bearing and raising children! Type III fun is not fun at all. Not while you're doing it and not afterwards. Think bad relationships, or any activity where you say to yourself, "why the hell am I doing this? And shoot me if I ever do it again". The only redeeming aspect to Type III fun is the possibility that there could be a silver lining or some valuable lesson learned that's useful in the future. 

My whole life, I've been a Type II Fun junkie. I love the challenge of difficult things. As a kid I loved going camping with Marine Sgt. Stanfield, our boy scout troop leader. Stanfield was a different kind of scout leader, because his trips always involved elements of danger and uncertainty. I especially recall a weekend trip to the Grutas de Cacahuamilpa, one of the largest live cavern systems in the world, where formations are still evolving and being shaped by underground rivers. We spent three days in utter darkenss, alternately hiking and swimming our way through dozens of salons, and camping in the dark on subterranean beaches. We carried our gear in special flotation tanks, both to keep our "shore clothes" dry and to keep us afloat in the longer deep river sections. Sometimes the water was so deep and the roof of the caves so low that here was barely enough space for us to keep our heads above water as we navigated to another cave beach. To get to the entrance of the cave system, we had to rappel ourselves and our gear down a 100' cliff. Epic! I'm amazed they allowed teenage boys to do those trips! There were ample opportunities for severe injury or even death.

Spelunkers navigating a salon at Grutas de Cacahuamilpa

When I graduated from high school, I took a gap year and went to live in Nome, Alaska, way up on the northwest coast, 1,000 miles from nowhere. What a great adventure. I had never met or even spoken to any of the people I came to know there (and still communicate with!). I had no idea what I was in for before going, or what that year would entail for me. But I blindly went and had an amazing experience that is as vivid to me today as when I did it 44 years ago. Dog sledding along the shores of the Bering Sea. Fly-ins into small arctic Eskimo villages to record and archive their traditional music. Living in a one room cabin with no electricity or running water. Eating seal, walrus, and muktuk (whale blubber). Walking along the rooftops of houses buried so deeply in snow drifts that all you could see was their chimney stacks.

My Alaska cabin

I continue to crave adventure. I've done countless hiking trips into and across the Grand Canyon. Each one its own unique adventure, modified by terrain, weather, and companions. I've done long bicyling trips with my best friend Dale. Over the past two summers we rode our bikes 1,100 miles around lake Michigan. Our trip was loosely planned. We didn't know what to expect, how difficult or easy it would be, or what we would encounter from one day to the next. I've gone blue water wreck diving with my kids. Each of these things was difficult, scary in its way, and fraught with risk. They were frequently unpleasant and difficult in the moment, but always amazing in retrospect.

Wreck diving in the BVI
with Henry & Jane

Rim-Rim-Rim with Karla
 in the Grand Canyon

Tour de Comfort Inns around
Lake Michigan

So, leukemia is a new adventure for me. Maybe this is going to be Type III Fun? This is not an adventure I would have chosen. But in much the same way as all the others, it will be it's own journey. The destination uncertain. There will definitely be danger. There will be times when I think I cannot keep going, and I will want to quit. There will be lots of advances and setbacks. And hopefully, along the way and the end of the road there will be opportunities to be grateful for the experience, to find contentment, joy, and perhaps to even gain an ounce or two of wisdom.

So let the adventure begin!

The language of cancer.

So, you know how when you buy a new car, and you're all proud and excited about this unique, cool, tricked-out blue SUV you just got, and then you're driving around town, and suddenly everywhere you look there's another blue SUV exactly. like. yours. You know that strange awareness?

Getting cancer is like that. You know it's been around and tons of people have or had it, but you never really paid much attention to it. Now it's all you see. You're suddenly hyper-aware that everyone has either got it, had it, or knows someone who does. Every street corner has a shiny new cancer clinic on it. Every TV ad is for Verzenio, Opdivo, Kisqali, Ibrance, Keytruda or some other targeted cancer therapy. Cancer is EVERYWHERE.

But worse than the ubiquity of it, is the language of it. It's weird. First, almost immediately, the way everyone communicates with you changes. They sorta kinda tiptoe around it, like Voldemort in Harry Potter. Nobody wants to say the dreaded 'C' word for fear of catching it, or perhaps that even mentioning it will somehow cause us to dissolve into a puddle of tears. Then suddenly everyone starts treating you differently. The concerned looks, the gentle touches, the over-sincere hugs, or the awkward silence like the proverbial elephant in the room that nobody wants to talk about. And when they do talk about it, their language takes on a particular vernacular:

"You're gonna fight this, right?"

"You've got a long battle ahead of you."

"You guys are so brave."

"You're gonna beat this, for sure!"

When cancer gets bad, tumors and cells are called blasts. The doctors tell you they have "arsenals of therapy weapons, to combat the illness (seriously!). When people's disease goes into remission we say they conquered their lymphoma, or whatever. Or if it doesn't, then "she lost her battle with breast cancer". It's the WAR ON CANCER. And I hate that language. 

It seems that every US President must declare war on something. Hoover declared a War on Crime. LBJ had his War on Poverty. Reagan gave us the War on Drugs, and Bushs I and II  drove the War on Terrorism. I guess we have Nixon to thank for the War on Cancer. Tricky Dick signed the National Cancer Act of 1971 into law and inaugurated how we talk about it forever more.  

I'm refuse to use this language. Cancer is not an enemy to be vanquished. This isn't a zero-sum win/lose battle. I'm not a warrior, and I'm not trying to fight anything. Cancer isn't even a thing. What does it mean to "have cancer"? There are more than 200 different kinds of illnesses that fall under the cancer designation. Some are so benign you don't even know you have them and can live a long, complete life with them. Others are so malignant they will cause you to die in a matter of weeks. When you hear 'cancer', you immediately think of tumors. But I don't have tumors and probably never will. There is nothing that can be surgically removed from my body that would help me. Even saying I have Leukemia doesn't begin to describe what I have. I'll share more about my specific leukemia diagnosis in a future post.  

CMML-1, my specific blood cancer, my form of leukemia, is an illness that has come into my life. It presents me with very few treatment options. The reality is that this disease or its aftereffects will be a part of me for the rest of my life. If I do nothing, it will cause my internal organs to fail in the relatively short term and I will die. There is no surgery to be performed. There is no drug I can take that will drive it into remission. The only option for me to potentially extend my life is an allogeneic stem cell transplant. More on that in a future post. 

If the Allo-SCT procedure doesn't end my life (10% chance of that), and if, in the subsequent months post-transplant, my bone marrow is able to produce normal blood, there is still a very high possibility that I will have to live with the after- and side-effects of something called Graft Versus Host Disease, which can also be life-threatening. I'll be living with the specter of leukemia's possible return, or from the likelihood that other forms of cancer will materialize in my body, or that my body decides to reject the new cells or vice versa. I'll be on medications for the rest of my life. So there is no vanquishing. There is no defeat. There is no battle to be won or lost. I live with this in one way or another, or I don't. 

And now, cancer has come to live with us. Not just me, but unfairly, with Karla as well. It's like some unwelcome, rude, demanding squatter has walked in our front door and taken up residency in one of the bedrooms. He shits in the hallway, drinks all my good booze, blasts death metal on the sound system, and we hate him. But he won't move out, the cops can't evict him, and so now we have to figure out how to restructure our lives around him.

It's early days for us still. I don't know how our cancer language will evolve, but it won't be around the metaphor of war. My path will not destructive. It will be transformative. I like that idea much better.

Signs in the rearview mirror...

How did you know that you needed to go get checked out? It's a question that I've been asked more than a few times in recent weeks.

It's been almost 2 months since we first bumped up against the reality that something big might be up with my health. And in my first post, I mentioned how this cascade of events was triggered by my routine annual physical. Now that the diagnosis is in and confirmed, I've had some time to reflect on that question a little more. 

Did I suspect something was up? The answer is yes, looking back, I can see that I have known for at least three years that something was not quite right, but maybe the eternal optimist in me would not allow me to consider that it was anything like leukemia. 

In December 2020, COVID ran thru our house. We had the usual symptoms, but nothing too bad. All of us were back on our feet within a few days. But from right about that time, I began to notice a series of weird symptoms: pains in different parts of my body. They were never at the same time, or in the same place. For example, I was on a solo bike ride – just my usual mid-week 25-miler – when suddenly, my back just seized up. It felt like someone had jabbed a knife under my left shoulder blade. I had to stop my ride, pull over and lay down on the side of the road for a few minutes. For the next three to four weeks, I'd get these crippling back spasms. They'd come on suddenly, last for about two to three minutes, and just as quickly they'd disappear. Very odd. The muscular pains began migrating around to different parts of my body. Not always spasms, but always sort of random: the pain migrated to my left thigh, and then a few weeks later, to my right shoulder, and then to a spot right under my right breast. 

Over the course of the past three years, a few times, I'd be concerned enough with a specific pain that I'd visit my primary care doc, Doug Brown, to discuss it. I was certainly getting more bronchial infections than I should have been. Was I having heart issues? Did I have something wrong with my lungs? The few tests we ran invariably came up negative. Between the two of us, we pondered that maybe my body was just dealing with residual viral impact from COVID, as there was nothing else that was obvious.  There's been some evidence that the COVID virus attacks the central nervous system, and these viral "fragments" could be triggering pains around my body. 

But along with the random pain symptoms, I noticed other things that we also were attributing to "long covid": I'd get a string of headaches that would last for several days at a time. I was easily fatigued. I'd get out of breath walking up 2 flights of stairs. Some days I'd be so exhausted I'd roll out of my office chair and sleep curled up on the floor for an hour or two in the middle of the day. Then about a year or two ago, I started feeling a general achiness in my bones. Mostly in my thigh bones, but also in my upper arms. I'd wake up in the morning and all my joints would feel stiff and achy. I'd think to myself, "Jeez, getting older sucks. If this is what I feel like at age 60, I can't imagine what I'm gonna be like at 70 or 80!" I'd secretly knew that I shouldn't be feeling like I was 90 years old. But then I'd pop a couple of ibuprofen and go about my day. Nothing much to be concerned about.

I began thinking that these symptoms were perhaps lifestyle related. Maybe I needed to clean up my eating and drinking habits. Like so many people, we had upped our alcohol intake during the COVID lock down, and probably hadn't moderated it enough since then. I could probably cut down on a few drinks each week.  If I was out running errands I might stop at McDonald's for two cheesburgers and fries; not the best nutritional choice, but YUM! I was still doing my 4-shot daily espresso jump-start, with a mid-morning topper-upper. Maybe my body was reacting to too much caffeine? Maybe I was getting inflammation from the things I was putting in my body?

I did some modifications. I definitely cut down on alcohol. I went from a nightly cocktail or two down to just one or two drinks a week. In January 2023 I quit coffee cold turkey, and replaced it with herbal and green teas. My favorite tea store, Fava Teas in Brookfield, has a special blend they called Ache Away Green Tea. It's  a wellness blend of green tea, ginger, peppermint and citrus, that touts its anti-inflammatory properties. That tea has become my new morning ritual. I also eat more berries than a grizzly bear these days – they're anti-inflammatory, you know. Not bears. The berries. 

So low level, yes. I've been trying to pinpoint and dial in something that was not quite right in my body for some time now.

And how do I feel now? I'll say about 30% of the time I just sorta feel like I'm coming down with the flu: general achiness and fatigue. My bones ache and my muscles are twitchy. And for about three or four months now, I've been getting tingly, numby sensations in my hands and feet. All of these, of course, are symptoms of anemia and leukemia. 

Merry Christmas 2023!

I'm being encouraged to write about this new phase of my life. I'm sure you don't need any more stuff to read or keep track of. But so many of you have expressed your concern and care and interest in what's happening to us. For my own sanity, I think the easiest way to keep each of you updated might be through this medium. If you want to know what's going on, this is the primary way I'll be communicating news and updates, so you'll need to subscribe. If you don't want to, that's also cool, and I'm happy to talk about any or all of it whenever we meet up in person or on the phone. Or not at all. This is our thing, not yours. Although we certainly appreciate the love, concern, and support.

SO, WHAT THE HECK JFLO?

On December 15, I went to my usual annual physical with my primary care physician, Dr. Brown. I was expecting a good bill of health. Yeah, there were a few little things that I wanted to talk with him about, but nothing major, and life was pretty good. The physical went as planned, then at the end of our session, he excused himself for a moment, returning a few minutes later. He said, "You're gonna hate me for this, but I'm referring you to a hematologist." I was like, "Wait, but why?", to which he replied, "I've been watching these white blood cell counts on your labs for the past couple of years, and previously, there was a decent explanation as to why they might be a little elevated; you were just getting over a cold, or you had a bit of bronchitis. But the numbers are much higher this year, and there's no good explanation, so we need to look into it right away."

That was Friday at 4:00pm. The following Monday at 9:00am I walked into the Oncology suite at Prohealth Mukwonago –  The alarm bells started going off in my head. Hold on. Oncology?? I thought I was seeing a hematologist? This can't be good.

After reviewing the prior week's lab results, Dr. Kapke, my "hematonc" (Hematologist+Oncologist) referral got straight to the point. "Based on what I'm seeing in your panels and your Complete Blood Count, I think we're looking at a form of blood cancer. But we need more detail, so I'd like to send you downstairs for a few more blood draws (a few! they must have filled 30 vials!!). And then I'm having my scheduler move some things around to get you in for a bone marrow biopsy as soon as possible. 

Now the klaxon was at full blast in my head. Bone marrow biopsy? What??? I don't feel sick at all!

Wednesday morning December 20, we returned to the hospital for the procedure. I'd be lying if I said I got a good night's sleep the night before. I'm not much for biopsies in general, but everything I'd heard about the bone marrow procedure scared the poop out of me. Literally. I was up three times for nature calls. One of my good friends who's a doctor had told me that with bone marrow biopsies, "the pain is real"...but not to worry, it was short-lived pain. Coming from a doctor, that gave me pause.

As it turned out, the biopsy was worse in my head than it was in real life. Uncomfortable? Yes. Would I want a repeat? No thanks (too bad! I know now that I'll have to have several more over the next months). They told me that because of the upcoming holidays, it would probably be two weeks before we got results from all the blood, marrow, and bone tests. "But", they said, "don't worry too much, if something urgent turns up, we'll give you a call."

We left Wisconsin that same day to begin the long drive for our six-week stay down in Arizona for Christmas and the month of January. We were definitely spooked by the recent events and the whirlwind nature of it all, trying to wrap our heads around all the new information. But I guess when it comes to blood cancers, they don't mess around. It's important to get to the bottom of it before things potentially become dire. 

It took four weeks to get all the test results back. We were anxious, and nervous, and our minds were running away with all the possible implications of what we had just experienced. The uncertainty of it all was unnerving. To make matters worse, all the test results were coming to my email, with notifications landing daily sometimes hourly on my cell phone: "You have a new test result in MyChart. Click here to review." By Christmas, I'd had enough. More than 20 test results had been posted to my account, and each seemed to indicate that something was horrifically wrong with me. I was losing it. I was scared to death, and having a hard time sleeping at night. To make matters worse, Dr Kapke was on family leave, as his wife had just delivered their fourth child right after Christmas, so I wasn't getting any information or reassurance that my worst fears wouldn't become a reality. I was just seeing the raw results. 

Of course, I had zero understanding of what I was reading. Most of the results were Greek to me. Literally. "Possible Myelodysplastic neoplasms" . Those are Greek words. Myelo means "marrow", Dys means "bad" and Plasia means "formation". Neoplasms originates from the Greek words "new formations". So Myelodysplastic neoplasms literally means "new, bad marrow formations". I know that now. I had no clue in December. 

By Christmas, I had turned off all phone notifications and refused the tempation to open test result emails. There was no sense in getting worked up about something I could not understand. Of course it was hard to not talk about it or speculate. Several friends told me they knew people who had blood cancer for years, and were managing it by taking a daily pill. And though nobody was saying it out loud, we'd all heard of people who had developed blood cancer or leukemia and died. 

Then on Christmas Day, I went to my dad's apartment to pick him up for Christmas dinner at my sister's. He was not at the entrance, he didn't answer his phone, and he didn't respond to knocks on his door. I had the apartment super let me into the apartment. We found him semi-conscious and naked on the floor in his bathroom. He had fallen sometime on Christmas eve and could not get himself up. Nothing was broken but he was battling a flu. After four days, the hospital could do nothing more for him, and they needed his bed, so he was discharged to a rehabilitation facility. Even though it had 5-stars on Yahoo, the rehab facility was dirty, dank, and depressing, filled with people who looked to be at death's door. We couldn't leave dad there, so we took him to convalesce at my sister's house. Within two days, his flu became pneumonia, he was declining rapidly. We sensed the end was near, and called 911 to get him back into hospital care. But he coded on the way back to the hospital, and died at around 6pm on New Year's day.

Between all the uncertainty of December's doctor visits, and my father's unexpected fall, decline, and death, our stay in Arizona turned out to be not-so-very-pleasant for us. 

On January 18, we received the final diagnosis from all the tests: CMML-1. The news came in a email: **FINAL DIAGNOSIS** Peripheral Blood: Leukocytosis including monocytosis. Normocytic anemia. Mone marrow: Chronic Myelomonocytic Leukemia-1 with Oncogenetic mutations of U2AF1, ASXL1, CBL, KRAS, and SETBP1.  

So,  Chronic Myelomonocytic Leukemia. It's a rare blood cancer that's diagnosed maybe 10 times in a million. It's different from CML, which is Chronic Myeloid Leukemia; that's the one that is quite common and can be managed and treated via oral medications where people can live for decades with few ill effects. One letter separates the two acronyms. But the diseases are a world apart. CMML is not a good diagnosis. If untreated, a person's life expectancy is maybe 2-3 years. You don't die from the leukemia per se. The leukemia simply robs your blood of all its health-giving efficiencies, and you end up dying of other things like heart failure, or kidney failure, or other organ failure. With my specific genetic mutations, there is a medium-high risk that the "chronic" phase of my condition will transform to an "acute" or "blast" phase, which would likely shorten my life considerably.

January 28 Karla and I left Arizona to return to Wisconsin. Karla needed to get ready for the spring real estate market, I had financial seminars scheduled for the beginning of February, and we had oncology consultations to go to. It was time to figure out what this diagnosis meant, and what we were going to do about it.

And that's it. Turns out I have a rare form of leukemia. Now what?