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Jason’s Stage 4 Colorectal Cancer Story

Jason’s Stage 4 Colorectal Cancer Story

Jason’s cancer journey began in 2005, in the middle of his Navy service. He began experiencing stomach issues and was diagnosed with GERD. 

In 2018, he was seen by his doctor when he developed severe abdominal pain and infrequent bowel movements. A scan revealed 80% of his liver was covered with metastatic disease, which led to a stage 4 colorectal cancer diagnosis

After years of fighting Veterans Affairs to prove his cancer was connected to exposure to cancer-causing chemicals during his Navy service, restitution was granted through the Pact Act – an Act that grants better healthcare and funding to veterans exposed to toxic chemicals. 

Jason shares his cancer journey, his work with COLONTOWN – a colorectal cancer support network, his dreams of leading a cancer retreat center, and how he overcame liver surgery and chemo after doctors said it couldn’t be done. 

At the Patient Story, we feature the real voices of cancer patients to empower and offer hope. Explore more Colorectal Cancer Stories for further inspiration.

Jason Randall shares his stage 4 colorectal cancer story
  • Name: Jason R. 
  • Diagnosis (DX):
  • Staging: 4
  • Symptoms:
    • GERD
    • Abdominal pain
    • Infrequent bowel movements/ constipation
    • Belly button discharge
  • Age at DX: 35
  • Treatment:
    • Surgery
      • Hepatectomy, cholecystectomy, lower anterior resection, lung ablation, port placement, fistulotomy
    • Chemotherapy
      • Oxaliplatin (OX), Irinotecan (IRI), 5FU (FOLF)
    • Radiation
    • 2 Y-90 radioembolizations

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table Of Contents
  1. Symptoms & Diagnosis
  2. Treatment
  3. Getting an Ostomy
  4. Post-Treatment Tests & Scans
  5. Reflections

Symptoms & Diagnosis

Tell us about yourself

My name is Jason Randall. I live in Eudora, Kansas with my wife and 3 children. We live on a hobby farm. I was in the Navy for 5 years from 2003 to 2008. After that, I went to school. 

Jason with his wife and kids

My wife and I were best friends in high school. After the Navy and college, we reconnected. When I came back from Hawaii for a semester at the University of Kansas, we started dating. My wife has our daughter from a previous relationship, who I’ve adopted.

We’ve lived on this hobby farm for 10 years. I’m a cartographer by profession. Technically, a GIS analyst. We like to fish as a family. We go to the gym and swim quite a bit.

When did you first notice something wasn’t right?

In about 2005, right in the middle of my Navy service, I had some stomach issues that they tested. They came to the conclusion that I had GERD reflux disease, so they put me on omeprazole and Zantac-type medications. It was fine for years after that. 

Receiving a diagnosis

About 2018, I was diagnosed. It blindsided us. I say us as in my family because I always include caregivers. They are often overlooked in this process. 

They saw that about 80% of my liver was covered in what appeared to be metastatic lesions…It started me in this world of advanced-stage colorectal cancer.

Jason and his family were blindsided by his cancer diagnosis
Jason's scans revealed 80% of his liver was covered in metastatic disease

Two weeks before, I had some severe abdominal pain that I’d never had before and 2 weeks before that, I’d noticed that I wasn’t going to the bathroom at a regular frequency. Then it just stopped and I started getting abdominal pain. That’s when I thought something was wrong. I need to go get this checked out. 

My mom had diverticulitis quite a bit over the last couple of decades and they said, “It’s probably that. Let’s get a CT scan just to make sure so we can put you on antibiotics for it.” 

I had that scan on July 16th. They saw that about 80% of my liver was covered in what appeared to be metastatic lesions. That prompted a PET scan on the 17th which confirmed it. My liver, the large majority of it, was covered in metastatic disease. It started me in this world of advanced-stage colorectal cancer.

Was there any connection between your GERD and colorectal cancer?

I brought that up along the way many times after I was diagnosed. The doctors never put them together because they generally think, anything in the upper esophagus or upper GI tract is Barrett’s disease or esophageal cancer instead of colorectal cancer. 

Jason's doctors believe his advanced cancer stage means he began developing cancer 10-15 years prior to his diagnosis

My colon, where we found the tumor was at the sigmoid part of my colon, right before the rectum. So there really wasn’t a tie to it. 

Ironically, after I had surgery to remove 30 cm of my colon, my GERD completely went away. It cued me to ask, what’s going on here? 

If you look at the history all the way back to 2005, I was on ranitidine, which is Zantac. Then when I got out of the military into the Veteran Affairs (VA) system, I was on omeprazole for 10 years. My doctor mentioned that the advanced stage of my disease and the extent of it [means] it had been in me for about 10 to 15 years at a minimum. That squarely placed it right in my military service.

Did the VA take responsibility for your diagnosis after your exposure to cancer-causing chemicals?

Not definitively. Presumptively, yes. I was fighting the VA for about 3 years, trying to tell them that everything lines up with the exposures I had while I was in the Newport News Shipyard. 

After I got out of my basic and my school training, I reported to the USS Eisenhower in 2004, in what they call an RCOH overhaul, where they take an aircraft carrier in the middle of its life and completely redo everything. They take it down to bare steel. They replace the reactor rods. I was in that environment for about 2 years. 

The Pact Act led the VA to take responsibility for Jason's cancer
Jason fought Veteran's Affairs for years before the Pact Act

We had all sorts of chemical and toxic exposures. You can use PPE and try to protect yourself, but you still inhale it once you take the equipment off. I was also within the burn pit zones in the Persian Gulf from 2006 to 2007. 

Finding help through the Pact Act

They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types.

The Pact Act relieved a large financial burden from medical bills

Jon Stewart was one of the biggest promoters of this law called the Pact Act for Toxic Exposures and Burn Pits. It finally connected my service to my cancer diagnosis. 

Because of the way the laws were written before, the burden of proof was on the person having cancer. They said you need to prove to us and provide a nexus that caused this, which is impossible. Even though statistically, 25-35% of all veterans of any service have an increased risk of multiple cancer types, like prostate, breast cancer, colorectal cancer, and all sorts of different things. 

The law was really good to help veterans who have been struggling to get this care and to have the military take responsibility for that within their service.

Did you have any other symptoms before your diagnosis?

The only other symptom was, before diagnosis, I had something in my belly button that would appear every 4 to 5 months. By the time I could get in [to the doctor’s office], it would go away. They’d say, come back when you can. By the time I could get scheduled, it would go away. 

It only lasted for a couple of days and it was like a little bit of discharge from my belly button and a little bit of hair follicles. It seemed like there were hair follicles that would come out. It’s hard to explain, but something wasn’t right. 

Jason and his family

It turns out that’s right where my primary tumor was, along the sigmoid colon. It was like, this could be a correlation to that. 

What happens, happens but I wish I could have got in when they could have examined that a little bit better.

Did you have bleeding?

They say the number one symptom of colorectal cancer is no symptoms at all.

You hear a lot of people with colorectal cancer say they had blood in their stool. I think I’ve only had it at one point and it’s because I ended up having an emergency stent placed shortly after diagnosis because of the situation at hand. Even then, it was a couple of times. 

They say the number one symptom of colorectal cancer is no symptoms at all.

How did you react to receiving your cancer diagnosis? 
Like many, Jason was unprepared for a cancer diagnosis

No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it.

It’s very vivid, even though in July, it’ll be 5 years now on this journey. I was diagnosed on July 17th, 2018. It was 2 days after my son’s second birthday, and my wife was pregnant with our third child. 

I remember walking into the doctor’s office after the CT scan. They called about 15 minutes later and said, we need to see you tomorrow first thing. I go in and the doctor casually says, “I don’t know another way to put this, but you’ve got cancer and it spread to your liver.” I said, okay, took a minute, and then as soon as I walked through the doors leaving the place, it was like a rush of holy crap. I’m a dead man.

No matter how much you think you know about cancer, unless you’ve experienced it firsthand or been a primary caregiver or even a secondary caregiver to someone, there are so many misconceptions about it. I thought I was dead. 

I come from a large breast cancer family. I carry a BRCA1 germline mutation. The women in my family, if they’re a carrier, they’re almost guaranteed to get breast cancer. It’s not as prominent in men. My mom had cancer, and her mother passed from cancer. I have had exposure to this, but it was emotionally devastating. 

»MORE: Patients share how they processed a cancer diagnosis

How did your wife react to your diagnosis?
Jason's wife reacts to his cancer diagnosis

My wife was at the bowling alley with the kids and a friend. When I called her, she completely lost it. It was a bad, very dark time. We ended up coming home that night, my wife and I. We had my parents watch the kids, and we just held each other thinking, how much time do I have? 

With 80% of my liver covered, that’s not a good situation. And I had a fully blocked sigmoid colon so they couldn’t go in and remove the primary tumor. I had to have that stent open me up before I could pass stool. Everything from there was a whirlwind getting into doctors, and getting the stent placed. It was emotionally devastating.


What were the next steps in your treatment?

That’s a little more vague to me. I do remember [the doctor] saying, we’re going to have to get you in for a PET scan, which happened the next day to confirm it. After that, I was at my local hospital system near Lawrence. 

Getting a second opinion led to new treatment options

If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.

Luckily, I have a doctor cousin who took me with his training. We called him and asked, “Do you have any advice?” He said, “I want you to go see Dr. Miranda at KU Medical Center,” which is the National Cancer Institute (NCI) here in the Kansas City area. It’s the only one in the Kansas City area. 

He came with me to the appointment. That was a very pivotal moment in this. Going to one of the top centers in the area with that NCI rating, it’s important to have. 

I work in the colorectal cancer support community and advocacy, and I heard the average time for people going from symptoms to starting chemotherapy is above 200 days, which is insane. I got in within 2 weeks. I was diagnosed on July 17th and I had my first chemo on August 1st, about 2 weeks later. I’m very blessed to have that team move that quickly. 

A lot of it is very vague. It was just, go see this doctor, see this, get this scope. If you’re not used to it, it’s a lot to process, to listen to everything they’re telling you, and to absorb it.

I’m very grateful my oncologist never told me an expiration date. They did say, “You have a terminal prognosis of chemo for life and are inoperable due to your extended disease. You’ll never get off chemo and you’ll never be operated on for a curative intent. Palliative reasons, possibly, but we’ll do everything we can to extend your life.” That was a big pill to swallow

How did you come to terms with a terminal prognosis? 
It was difficult for Jason to come to terms with his prognosis

I don’t know if I ever fully digested it. I never believed I had cancer. It was all very surreal. I thought, is this happening? Did I get phase-shifted into some weird parallel universe? This has to be a bad dream. When am I going to wake up? 

It was a lot to process. Every time I heard it, I would sigh and griff and say, “No, I don’t want to hear this. This is not my fate. I don’t foresee this being me.” It was really hard to swallow, especially every time my oncologist said, “We’ll do everything we can to extend your life, but you will be on this forever.”

»MORE: A colorectal cancer oncologist shares guidance to patients

What treatments were you on?

I was put on what they call FOLFIRINOX. Sometimes they call it FOLFOXIRI. It’s basically how the drug is administered. With colorectal cancer, if you’re not a candidate for immunotherapy, irinotecan, and oxaliplatin are the 2 big drugs [that are given], and 5-FU which has been a standard since the 70s. 

I had what’s called the kitchen sink. It was a combo of those 3 drugs. I started on August 1st and I started with what would have been the first of 30 initial cycles. I did 9 of the FOLFIRINOX, then we paused to do Y-90, which is Yttrium-90. It’s a radioactive isotope of the element yttrium. 

Jason was on irinotecan and oxaliplatin

They go through your hepatic vein and your groin and they send a catheter up into your liver. It’s a liver-directed therapy where they drop millions of radioactive resin beads right into your liver where the tumors generally form based on where the blood flows. I had 2 of those in November and December 2018, then I resumed 11 more treatments of what they call FOLFOX, which is the previous one, minus the irinotecan. They wanted to drop down the irinotecan because of the 2 Y-90. It’s a lot to take on with the radiation.

It’s targeted radiation, so I ended up having 6 of the 5-FU, largely driven by blood numbers – whether my white blood cells were up or my platelets were high enough. My big issue was low platelets, something I still suffer from today, from all those treatments. 

Switching treatments due to lung spots

In September of 2019, I had some lung spots show up so we switched the drug oxaliplatin. A lot of the time, oxaliplatin causes severe neuropathy. Luckily, I never had too bad of that and I ended up taking 20 cycles with that in the mix, which is a lot. Some people dip out after 4. Usually, it’s between 8 and 12 of those. 

Then I started back on the irinotecan drug through a combo called FOLFIRI. We added a biological drug called Vectibix or panitumumab, an epidural growth factor inhibitor that prevents blood vessels from growing. I did 4 more treatments through December 2019, and then I stopped to break for Christmas. 

Getting a second opinion led to new treatment options

Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life.

My story started to change through COLONTOWN, an online colorectal cancer support community. I learned about Dr. Fong who’s a liver specialist and surgical oncologist. He doesn’t do just the liver, he does a lot of stuff in the abdomen area minus the colon itself. 

People kept saying, you need to go see him. I had scans in December at my local center. Even though I had a really good response to chemo, they told me, you’re going to be on chemo for life and inoperable. They were scared that if I did have liver surgery, the liver would grow back. It’s the only organ that does that and the disease would progress with that regrowth. 

City of Hope in California

Even though they had my best interests in mind, I still sought that second opinion out at the City of Hope in California. It’s probably the best decision of my life. It led to a surgery that was 12 hours long in February 2020. 

They removed my entire right side and a right hepatectomy and then a lower anterior resection (LAR). They removed 30 cm of colon and a quarter of my rectum with curative intent and also took my gallbladder. I had 5 ablations on my left side at the time. I had lost 110 pounds prior to that surgery.

What inspired you to get a second opinion?
COLONTOWN is a support network for colon cancer patients

It was the support group COLONTOWN. People kept mentioning it. I was holding out on hope at my current NCI center. I still actually see them to this day, but I was hoping that with that next set of scans, they’d say, we’re going to try. They never did. 

Ultimately it was my wife who said, “You need to go do this. Let’s go out to California. What is the worst they’re going to say? No, and you’re still the same?” I said okay, let’s rule it out. If one of the top people in the world says no, then it’s my fate. Thankfully it wasn’t.

Cancer reoccurrence and COVID caused changes to treatment
Cancer reoccurrence and COVID caused changes to treatment

That’s not where the treatments ended. I stopped chemo after that because I had 30 cycles and 2 liver embolizations and they said my body needed a break. About 6 months later it returned, but not in my liver or colon. It returned in my tailbone in October 2020. 

I started back on the FOLFIRI with the Vectibix for 4 more cycles. On my very last cycle, my 34th chemo, 2 days later I tested positive for COVID. That was a crazy week. COVID delayed my radiation treatment. 

In February and March of 2021, I had 28 full pelvic radiation sessions to the entire pelvic region, which destroyed my rectum. For 3 months, it was pretty rough. I was sitting on the toilet for 3-plus hours a day, not really living life, just stuck. 

Finding hope after his son’s birth

Throughout January and February 2019, I was on a lot of treatments. My son was still in my wife’s belly at the time. I caught him about 2 hours after my eighth round of heavy chemo. That gave me a lot of motivation, wanting to see my kids grow older. 

It’s a very powerful moment in my life. Seeing my son born and being able to catch him. Both my sons were born at this house. My wife did a home birth, bless her soul. I didn’t think it would work out, but it did and it really changed me. It gave me a little bit more hope in October 2018 when that happened. 

Jason's son being born gave him new hope

Then it got dark again. I had surgery in January 2019 because the chemo destroyed my anus and caused a fistula to bore through. It caused a lot of pain. 

»MORE: Parents share how they talked to their kids about cancer

Integrative medicine in cancer care

In early February, I found an integrative medicine doctor through my dentist of all people. I went to see him and he joined my team. That was one of the biggest moments of my cancer experience. Not just diet and exercise, which are important, but he also helped mitigate the side effects, which helped get through it and process it.

Jason stayed hopeful

I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life.

One of the biggest things [he taught me] was the mind-body connection and meditation called Psychosomatic Wellness, which has a lot of science behind it. I wasn’t big into that kind of stuff. I thought, “This is heebie jeebie. This isn’t going to work.” 

About a month into it, I connected to it. I went somewhere. I still don’t know what to call it. Some people may call it universal energy, God, chi, soul. Whatever you want to call it, I went somewhere and connected with something. It really helped me process things. 

I was able to accept life, death, purpose, and what all this means. I was grateful for whatever was to come. I carried that into this second opinion. I had hope, even though the hope was taken out from underneath me when they said you’re going to be on chemo for life. What do I have to lose? I went out to California and sure enough, it happened and here I am still.

Jason remained hopeful despite being told he would be on chemo for life

Getting an Ostomy

Describe getting an ostomy bag

Back during the big February 2020 surgery, I had a temporary ileostomy placed which is where the small bowel dumps into a bag with a stoma. That was reversed in May 2020. 

Fast forward to the radiation. In June 2021, I had an abdominal perineal resection (APR). It’s a surgery that’s known as Ken or Barbie butt. Imagine a Ken doll or a Barbie doll. They just have a straight stitch on the backside. They took my anus, my rectum, and in my case, my tailbone and part of my sacrum to get clear margins. It was successful, and it left me with a permanent colostomy bag but it’s been a blessing in disguise. 

Having it removed has been great for me. I don’t sit on the toilet for 3 hours a day. I spend 60-90 seconds messing with bowel function now. I still swim 3 to 4 times a day. I get to play with my kids. I lost 110 pounds and I wasn’t sure if I’d ever gain it back, and now I’m on the other end of it. It’s been so good to me that now I need to lose a few pounds.

Jason swims 3-4 times a day with his colostomy bag
Jason is able to play with his kids with his colostomy bag
Jason lost 110 pounds during his cancer diagnosis, which he gained back in time
What types of ostomy bags are there and which do you use?

There are several types of ostomy:

  • The ostomy that comes off your small bowel and avoids your large intestine.
  • A colostomy, which can be placed along your transverse colon all the way down to your sigmoid. 
  • One-piece open bags which have a little cut-off valve that you can drain as needed.
  • Two-piece drainable bags. 
  • Two-piece closed systems in one-piece closed systems.
There are several types of ostomy bags to choose from
Jason's had success with both colostomy and ileostomy bags

I had a temporary ileostomy. At first, they tend to be more of a liquid output. They’re always on because the way the bowel works is your ileo dumps into your cecum and that’s when your stool starts to form. Before that, it’s all liquid as your small intestine absorbs nutrients. [Ileostomy is] common when people have a large surgery over a colostomy. 

If you’re removing the lower part, you tend to get a stoma. That’s the medical name for the exit point. The stools tend to be more formed, it’s more predictable. I find that [colostomy] systems are a lot easier to use than the ileostomy systems. 

Considerations when choosing an ostomy bag

Any closed system is not a good idea if you have an ileostomy, because you’d be changing it all day long. Whereas with a colostomy, it’s a little more predictable. It’s easier to manage. People tend to go with closed systems for convenience. 

I used to be a 2-piece ostomy person for both my ileostomy and my colostomy. I’ve had about 2 years of colostomy and 3 months of ileostomy. With the colostomy, I’ve gone down to a 1-piece system. 

There’s usually, a flange that adheres to your stomach. Once that gets on, a lot of people use either pastes, barriers, or protective rings to help hold that on to prevent leaking. 

Leaking is the #1 thing that gets people flustered. It’s like crapping your pants and no one wants to crap their pants. It’s one of the big anxiety drivers with an ostomy. Am I going to leak? How am I going to manage this? 

Also when you have a peristomal hernia. The creation of a stoma is a hernia in itself. That can cause more herniations so you want to be very careful with your abdominal wall and building your core back. When you get a herniation, you can feel it. It can lead to blockages. 

With an ileostomy, you have to watch your diet a lot more than with a colostomy. Things tend to get blocked more with the ileostomy. From my experience and hearing from others’ experiences with a colostomy, people can still get it.

Leaking is the #1 thing that gets people flustered…It’s one of the big anxiety drivers with an ostomy.

If you have an ostomy, make sure you have a good hernia belt. I’ve got several. I have several Stealth belts. I also have one called a Stomaplex, which is like a stoma guard for impact. You don’t want things to hit it because it can bleed. Some people also use a Nu-Hope binder. It’s like a taller binder that goes around with a hole in it to support that and push your abdominal wall together so that you don’t herniate as often.

Special belts are recommended to support and prevent hernias
Jason uses Stomaplex to guard his stoma against impact
Jason has several Stealth belts for hernias
Is colostomy irrigation an option for some?

You cannot do it with an ileostomy, but with a colostomy, not many people are aware you can do irrigation. Instead of having to worry about having a bag going throughout the day and finding a frequency, people that are more active tend to go the irrigation route. 

Imagine an enema but for your stoma. It goes all the way up your bowel track and basically gets behind the stool and you force water through it and then drain it over the next 30 minutes to an hour after that. When it drains, your bowel is empty and you can put a stoma cap on it. A lot of people are able to go hiking for 24 to 48 hours at a time [after irrigation].

Has your ostomy experience always been good?
Jason recommends trying different ostomy bags to find what works for you

Go out there and explore, call, get samples if you can, and find the system that works for you.

I’ve had a very good experience with my colostomy and my ileostomy. A lot of people do have struggles though, so if someone’s out there and they’re asking, “Why does this guy have such a good experience?” You’re not alone. 

I struggled the first couple of months with mine before I found a nice rhythm and system. Don’t be afraid to call the 3 big companies – Hollister, Convatec, and Coloplast – and request samples. It can be very good to talk to one of their reps to find out what system works for you.

Having an option between a flat bag and a convex bag can be a game changer. A lot of people get stuck and say, “This is what the hospital gave me. How do I deal with this?” Go out there and explore, call, get samples if you can, and find the system that works for you. Because what works well for me may not work well for you.

Post-Treatment Tests & Scans

A circulation tumor DNA (ctDNA) test helped catch cancer reoccurrence 

In June when I had the APR, I got the colostomy, and my Ken butt, I had about a year’s worth of no evidence of disease (NED). Then I had a reoccurrence in my lung. A spot that had been on CT scans since diagnosis, which they thought was scar tissue, initially never responded to any other thing. After all the chemo I went through, it decided to grow in May 2022. 

A Signatera ctDNA test detected cancer reoccurrence in Jason's tailbone

I didn’t go on treatment because we caught it very early. I’m on a circulating tumor DNA test (ctDNA) called Signatera. Another company, Guardant, has one called the Reveal. It’s the same test, different companies. They sequence the biology of your tumor, specific to the person and no one else. The signature will never pop up in anyone else. 

It can detect circulating tumor DNA in your body. It’s not cancer itself, it’s just junk DNA our body puts off, but it has that signature of your disease and they can detect if you have a reoccurrence. My tailbone reoccurrence was caught by September or October 2020. 

After I went through the radiation, the chemo and more radiation, and the second major surgery, I was about a year clear. Then I had that Signatera test which detected an extremely low amount. 

Is a ctDNA test for everybody? 

It’s still in the testing phase. Not everyone responds the same. Their bodies aren’t as sensitive to the test.

There are also different areas of the body that put off more ctDNA like the liver, whereas the perineal may not. It’s still in flux, but it can be another tool because the normal marker for me was never above. It was always within range and it still is. It’s never varied more than a point, so it was never really a good indicator. The Signatera test has been really important for that. 

COVID delayed a necessary treatment

In May 2022 when I had a spot come back in my lung that grew, COVID struck again. When I went in to get it ablated, I’d had COVID 3 weeks prior. Even though I felt better, my lungs still had some junk in them covering up the spot and they can’t ablate what they can’t see. 

Then in August 2022, I had a biopsy that confirmed it was colorectal cancer in my lung and I had an ablation the same day. I was in at 6 a.m. and I was out by noon, working at 12:30. It was the least invasive. It allowed me to skip treatments by detecting them so early. 

As of Monday, I had a negative Signatera test come back and I had my CT scans showing that I’m 9 months no evidence of disease and I’ve been off chemo for 2.5 years.

COVID delayed Jason's lung ablation
How does it feel to be done with chemo?

Surreal. They told me I’d never get off of it, and here I am. 2.5 years off of chemo.

How often do you have scans?

Right now it’s every 3 months until I hit 2 years. Then it should jump up to every 6 months. In 3 to 5 years, they’ll jump it up to either none at all or every year. 

I plan on setting records. I’m going to be the longest person NED ever. At least that’s the way I’m setting my mind up for it. 


Describe the work you’ve done since being diagnosed
Jason and friends standing in support of Man Up To Cancer
Man Up To Cancer encourages men to not isolate after a cancer diagnosis
Jason carries the banner for Man Up To Cancer

I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.

I do a lot of work within the colorectal cancer support space. I’ve worked for COLONTOWN since July 2020, after I had my Dr. Fong surgery. Dr. Kaiser was my colorectal surgeon. 

PALTOWN, which is the nonprofit for COLONTOWN, asked me to be on their leadership cabinet. They were forming a new leadership cabinet, a new model. There are 7 of us. I’ve been there ever since. 

I do a lot of support work. I reach out to a lot of people. I do work for Man Up to Cancer. A primary goal is keeping men from isolating during a diagnosis. 

I also do early-onset colorectal cancer awareness through the Colon Club. Through that group, I was in their 2023 On the Rise magazine. It lays out where we’re at and our story to raise early-onset awareness. It came with a photo shoot. I never thought I’d become a model but here I am.

Jason modeling for On The Rise, a Colon Club magazine
Jason shares his story in On The Rise magazine
Jason poses with his ostomy bag for On The Rise magazine

I’m blessed to be where I am, and if I can help alleviate someone’s symptoms, give them peace of mind, or just provide some hope, I won’t be quiet.

The importance of expressing your emotions

Meditation, I went somewhere with it and that was my first foray into the emotional side of [my diagnosis]. I learned to accept that it’s okay to be emotional. And we should be emotional because if you push it down, it does nothing but hurt your mental health. Other people are going through this, and at this point in the game, if you have cancer, who cares? 

Jason encourages cancer patients to express themselves

It’s so much easier said than done, but you need to talk. Tell everyone how you feel. Some people are quieter than others. If you need to join a group and listen to other people do it, you don’t have to be active in those communities. Seeing what other people are going through can help your mental and emotional health more than anything. Some of us happen to be a little more vocal about it, but it helps to get people out of that bubble, that survival mode that we get stuck in. 

A trip to Hawaii led to new revelations 

In 2021, my family was gifted a vacation. During this trip, we realized that we weren’t living. We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival. 

A family trip to Hawaii changed Jason's projectory
Jason was inspired to create a cancer retreat center
Jason and his wife began planning to start a cancer retreat center

It woke something up in us. We asked, what have we been doing? I’m doing all this support work, but we’re just going through the motions. We’re not really living our own lives. 

We came up with the idea of going back to the Big Island of Hawaii. Then we said, we should move back there. 

We came back [home], I looked at my wife and said, “I have this crazy idea. Would you ever move back, get a secondary house and host people to experience what we did?” I was thinking she was going to say, “You’re nuts, Jason. No.” And she said, “Yeah. I think that would be great.” So we started developing this plan. 

I went to school for a semester on Oahu at the University of Hawaii Manoa studying anthropology and geography. It’s a beautiful place. If you’ve never been, I highly suggest going. 

Jason's family realized on a trip to Hawaii that they were in survival mode rather than living to the fullest

We were stuck in this deep survival mode, which is mental and emotional depression. You’re living between scans. You’re stuck in survival.

Connecting with a cancer retreat center

About 6 months into [developing this plan], I was looking for health care on the Big Island or through the VA because I’ll always need to go see doctors. I found this cancer retreat on the north side of Hawaii on the Kohala Crater. We said, “Holy crap. These people are doing what we thought of, except it’s a whole retreat center.” We reached out to them and they agreed to become our mentors. 

Life gets busy with 3 kids and I was still worrying about that lung reoccurrence. Two days before or after my lung ablation, I finally had my VA claim accepted which lifted a huge medical burden off of my back because they’ll cover all my medical expenses. That freed up some resources. 

My wife and I flew out in December to visit them as a patient and a caregiver to see what they had to offer. We really bonded with the couple. We shared our story with them. She was a cancer survivor. Her husband was on chemo for 12 years before she got with her current husband. He was a disabled veteran as well, and we really bonded. 

Jason connected with a cancer retreat center in Hawaii
Jason and his wife are close to accomplishing their dream of owning the cancer retreat center they visited in Hawaii
Jason and his wife have plans of living on-site in Hawaii

We told them our dream and they offered to sell us the place. I went back for 5 weeks in April and March of this year to see what they meant by that, get more details, figure it out, and work on the farm. It’s also a sustainable farm that teaches food as medicine, and it has a temple that aligns with the integrative practices that I was doing, which was so beneficial to me.

After that trip ended, we came back and we now have a purchase agreement with a timeline to make that happen. We’ve got a little more money to raise and we have a timeline to do that. 

My wife and I want to move our family out there, live on-site, and host cancer patients. Ultimately, it would be if we can find enough funding where it’s no cost to other people, but we’ll see how it goes once we get the next steps in place. That’s pretty active right now. We’ve formed an LLC and our nonprofit to make that happen. 

What’s helped you stay hopeful throughout your cancer journey? 

It’s hard to think in terms of hope when you are told, you’re not going to have any other options or it’s a grave diagnosis. Sometimes it’s hard to remove yourself from thinking way into the future. You have to just take it day by day. Take every day, even if it’s minute by minute, hour by hour. Do what you can to help yourself get through the day. Join support groups. That’s been such a big, thing. 

The first thing you need to do is never look at Dr. Google. It’ll send you down a rabbit hole of despair. I had my first mental breakdown ever because I was looking at Google and looking at different statistics, then I started thinking about my kids. Avoid that. 

Jason encourages cancer patients to take it day by day

Find your people. Find people that will lift you up and support you. A lot of people lose their support networks, especially once they’re out of treatment. Everyone thinks, I’m cured or thinks, you’re done. You’re never really done. Whether the physical stuff is over and the treatments are over, there’s going to be mental and emotional damage. Don’t dwell on that. Everyone goes through this with a cancer diagnosis. It’s okay to not be okay.

What advice do you have for someone recently diagnosed with cancer?
Jason recommends setting future goals

If I have any advice for anyone starting a diagnosis is, once you get diagnosed, it’s going to be rough at first. But once you get through that initial despair and anxiety, start setting goals. Future goals.

Something my integrative medicine doctor told me and it’s been my mantra ever since, he said, “Jason, set a goal and reach it. And once you reach that goal, set another one. Always keep your eye on the prize.”

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Acute Myeloid Leukemia (AML) Leukemia Patient Stories Uncategorized

Steve’s Acute Myeloid Leukemia (AML) Story

Steve’s Acute Myeloid Leukemia (AML) Story

A year away from retirement, Steve was looking forward to his final year as a Sociology teacher until a routine check-up revealed an alarmingly low white blood cell count

Today, Steve is a poker player, traveler, ambassador of sociology, and going on 5+ years as a volunteer in the cancer community. He also wrote a book about his experience called, “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes).”

Steve shares his story about being diagnosed with acute myeloid leukemia (AML), receiving a cord blood stem cell transplant, and how mindfulness meditation yoga helped him stay positive throughout his journey. 

Steve, acute myeloid leukemia cancer survivor
  • Name: Steve B.
  • Diagnosis (DX):
  • Staging: N/A
  • Symptoms:
    • Low white blood cell count
  • Treatment:
    • Chemotherapy
      • 7+3 Cytarabine & idarubicin
    • Pre-transplant conditioning
      • Cytoxan
      • Fludarabine,
      • Total body irradiation
    • Stem cell transplant 
      • Cord blood donor
Steve's cancer timeline

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table Of Contents
  1. Diagnosis
  2. Hospital Stay
  3. Chemotherapy
  4. Stem Cell Transplant
  5. Life After Cancer
  6. Reflections


Tell us about yourself
Steve is well-traveled
Steve is a sociologist teacher of 40 years
Steve enjoys poker and found poker wisdom helped him in his cancer journey

I need to start with my occupation and my profession, which I dearly loved because I spent about 40 years as a practicing sociologist. And although I’ve retired, I continue to be in love with my discipline because it’s a window into the world in so many different ways. 

I used to urge my students – unless you plan to live on a desert island for the rest of your life, you really need to take sociology to understand the world that’s going to shape you. So you can be an active agent in that world and know how to respond and react. 

We can look big picture of the world capitalist system, or we can micro-focus on 2 people interacting and everything in between. I find it to be a completely captivating perspective for looking at the world. I’m quite the ambassador for trying to recruit people into sociology when I’m not playing sociologist. 

I’ve been to Minnesota’s Boundary Waters Canoe Area Wilderness for more than 30 trips, usually a week-long, sometimes 10 days, in the wilderness where you pack everything that you’re going to need and try to survive for 10 days in a remote wilderness area. It’s a great retreat from everything having to do with the modern technological world that we live in. 

I like to play poker on the side and shoot pool with a buddy of mine. My wife and I have done a number of cruises, including the Mediterranean many times. I have interests outside of being a sociologist but that’s been my core identity for most of my adult life.

How would you summarize your cancer story?

It would underscore the suddenness with which this came over me. The only time I was in a hospital before my treatment for AML was on the day I was born in Madison, Wisconsin, in 1951. I had the honor of being the 200,000th officially registered patient at Madison General Hospital, so I was destined for something, but I hadn’t been in a hospital other than to visit people for 64 years. 

I landed in a hospital very quickly and I stayed for a very long time. It was all new to me. If you would ask me to define leukemia, I couldn’t have done it. I knew nothing about it, I had no exposure to it, and I had no reason to have any familiarity with it. It was a real crash course in trying to figure out what the heck was going on and where was it going to go. 

I’d give a nod to the value I found in writing my story, that was one of my basic survival mechanisms. Maybe because I’m an academic and I’m comfortable with writing, but it was more than that. Telling my story for myself and for others was a way of maintaining my sanity.

A routine check-up reveals an abnormally low white blood cell count
Steve celebrating his retirement with cake

I kept the appointment at the last minute. Arguably, it may well have saved my life because they did some routine lab work and came back with very low white blood cell counts which was a red flag for my doctor. 

It was the spring of 2016. Professionally, I was looking forward to one more year of teaching and then I was going to glide into a carefree retirement. But I had an annual physical schedule, which they always encourage us to do – go in and get your checkup. 

Things were going so well, I almost canceled it. I thought, there’s nothing to learn here. I feel fine. I’m doing well. Why do I want to spend an afternoon going and doing this? But I kept the appointment at the last minute. Arguably, it may well have saved my life because they did some routine lab work and came back with very low white blood cell counts which was a red flag for my doctor. 

He said, “I think you should go see a hematologist.” I didn’t know what a hematologist was, but they made an appointment. It was an office of Hematology/Oncology. I thought, what tree are these people barking up? I feel perfectly fine. Oncology is the furthest thing from whatever’s going on here. 

Receiving a diagnosis
Steve received an acute myeloid leukemia diagnosis after a routine check-up

…he said in about a 10-minute conversation that I had acute myeloid leukemia (AML). I didn’t know what that was. I have 50% blasts in my bloodstream. I didn’t know what that was. 

To humor my doctors, I met with this hematologist. They were also very concerned and said, “The next step should be getting a bone marrow biopsy to see if we can rule in or rule out what may be going on here.” I said, “If that’s what you think is appropriate, I’ll follow your recommendation. But I have no symptoms. I’m sure when we do this thing, it’s going to rule out whatever you think is going on that’s so bad.” 

Call it confidence, call it naive, call it stupid, but there I am going in. It was a heck of a week. The biopsy was on a Monday afternoon. On Tuesday, I swam my normal 50 laps, saw a chiropractor, did some shopping, and I ate dinner out. Nothing could be more normal. 

Wednesday morning, I played a weekly poker game with some retired guys and that afternoon I came home and my wife said, “That doctor called and wants you to call him back.” I placed the call thinking, again with this overconfidence, this is when they’re going to tell me everything is really fine. 

Instead, he said in about a 10-minute conversation that I had acute myeloid leukemia (AML). I didn’t know what that was. I have 50% blasts in my bloodstream. I didn’t know what that was. 

He said, “It’s imperative that you get to a hospital immediately. We’ve made an appointment for you at 9 a.m. tomorrow morning. Report to this hospital,” which happened to be across the metro from the west side of the Twin Cities where I live to the flagship hospital for my insurance. 

The rest of that day is a blur. I can’t clearly remember it. I wasn’t scared or frightened or panicked. I didn’t have any conception of what was happening and how I should feel. Numbness prevailed through that evening. 

I packed up some things, not knowing what to pack. They said I could expect a long hospital stay. The next morning, my wife and I drove across the metro.

»MORE: Patients share how they processed a cancer diagnosis

How did your wife react to your diagnosis?

Like me, she had no idea how to react and what this meant. 

Steve's cat Sasha
Since overcoming cancer, Steve has volunteered 5+ years in the cancer community
What was it like not knowing much about your diagnosis? 

It’s the “Fast and Furious’”of blood cancers. It’s the deadliest of the blood cancers. I’ve heard people say, without treatment upon diagnosis, life expectancy can be measured in weeks or months if you’re lucky. It’s that fast.

My first reaction was not to go on Google and look this stuff up. Intuitively, I knew that was not a wise thing to do. In fact, throughout my early treatment, I remained naive about what this disease was and what course of treatment I could expect. In an odd way, I think that served me well until I needed to hear the hard story about what this is and make some decisions. 

I was glad I didn’t know much going in because I think it would have been overwhelming. There is some research that’s been done specifically on AML patients that finds, the more they know about their prognosis, the more stress they feel and the more physical symptoms they experience. Depression sets in. 

It’s not a pretty story. It’s the “Fast and Furious” of blood cancers. It’s the deadliest of the blood cancers. I’ve heard people say, without treatment upon diagnosis, life expectancy can be measured in weeks or months if you’re lucky. It’s that fast. Not learning all of those facts about AML until I needed to know them to make decisions about treatment, served me well.

Hospital Stay

Did the doctors tell you how long you’d be at the hospital?

They said weeks, but they didn’t specify much more than that. 

Once I got my feet under me, I wanted to be a proactive patient and know everything from a scientific perspective. How does this disease work? How does my treatment work? I wasn’t curious about the prognosis. It was that division of labor – I want to know these things but not that thing. 

Transferring to a local hospital

We drove across town, we arrived at the hospital, and we spoke with a very good oncologist. What I appreciated is he got to know us as people and not just as a potential patient. 

At one point he said, “I think we could take good care of you here, but you probably want to be treated closer to home because of all the back and forth that’s going to be going on for you and all the people visiting you. I know someone across the Twin Cities, an oncologist. I can give her a call and see if she might be able to take you on as a patient.” 

It took a couple of hours, but the connection was made so we drove back to a hospital much closer to town and checked in. There were some delays here and there, but that’s pretty typical in hospital admission.

Watching the medical workers was reassuring

They said I would be going to room 4-East-3. I envisioned I was going to be in someplace called room 4, in bed 3 in a barracks-style room, like an old war movie. That’s how little I knew about hospitals. It turned out I had my own room. It was fourth floor, room 3 in a very interesting hospital space where there was a central nurse’s station and about a dozen patient rooms in an oval shape around that nurses station. 

I ended up liking that because I was a person that wanted to keep my door open. I wanted to see what was going on. I wanted to hear the chatter. I wanted to be connected to something larger than just my hospital room. 

The more I thought about it, I realized being able to watch the nurses and the doctors go about their business in a perfectly normal way, as if this was a routine day at the office for them…I don’t know what’s happening to me. I don’t know what’s going to happen to me, but as I watch these people go about what they’re doing, they seem to know what they’re doing. I can tell they’ve done this before. I feel like I’m in good hands. It was really reassuring just to have that connection from the very first day.

I wanted to see what was going on. I wanted to hear the chatter. I wanted to be connected to something larger than just my hospital room.

Describe how your wife ended up in the hospital while you were there

I ended up in this hospital on Thursday afternoon.

Another side story that I should share because it was pretty impactful – my wife wanted to stay in my room that night to keep me company. I said, “There’s no good place here to sleep. You might as well go home.” 

She got up out of one of those huge recliners that they have in hospital rooms and her right leg buckled under her and she winced in pain. We didn’t know what was going on. She limped out of the room and off she went. 

The next morning, I get a call that she can’t get out of bed, the pain is so bad. She calls her sister, her sister comes over, they call 911, and they send an ambulance. An hour later, she arrives at my hospital in an ambulance at the ER. 

It turns out she has a hairline fracture in her femur bone and she’s going to need surgery so she checks into my hospital and gets a room 2 floors above me. She stays there for a week. During that same week, I start my chemotherapy treatment. I checked into the hospital on Thursday, Sue checked in on Friday night.

Steve's wife ended up in the hospital at the same time he did


Starting chemotherapy

I started chemotherapy, it was called 7+3. It was the standard of care at the time. A week-long infusion of cytarabine and another medication called idarubicin. 

I don’t think I saw my oncologist until Saturday after I started chemo. That was when she began to lay out what was going to happen in the short term. She said, “You can expect to be here for at least a month. Because this chemotherapy is going to create a lot of side effects, you’re going to get really sick. You’re going to have infections and fevers. We know how to treat them, but they’re serious enough that we’re not going to let you leave here until you get through that process.” 

From the first day or 2 that I was there, I had a short-term sense of what was going on. They were vague discussions after that. “You’re going to need more treatment, but we’ll cross that bridge when we get to it.” They really wanted me to focus on this first round of treatment because the goal is really just to stop the leukemia. Ideally to get into remission, and that’s going to buy you enough time to then consider what are my options. What comes next?

What were the effects of 7+3 chemotherapy?

I’m glad I didn’t know this at the time, but they say the chemo I had was really harsh, really brutal, and really wicked. It was nasty. They didn’t tell me that at the time. They said this is the treatment, and I said, okay, let’s do it. 

My oncologist said about day 10, these things will begin to happen. I got to day 10, I’m doing fine and I’m cocky. The next day, everything just hit the fan. Colitis, E. coli infection, full body rash, headaches, fevers, diarrhea. You name it, I had it. She was exactly right, she was just off by 1 day. For about 2 and a half weeks it was awful. 

Collaborating with doctors to find the best treatment

I gained a real appreciation for infectious disease doctors. These people would come in every day and say, “What are your symptoms today?” I’d rattle them off and they’d say, “This antibiotic, we can get one that’s a broader spectrum. We don’t know exactly what’s going on. Let’s switch it out for this one.” Same with the antivirals, the antifungals. 

At a couple of points, it was more like a collaboration because they couldn’t figure out exactly what was causing the side effect. I remember one day saying, “I’ve been on that antifungal medication from the very first day, and somehow I think that’s complicit in some of these side effects.” And they said, “Okay, we’ll switch it out with something else.” That problem got a little better, so it was nice to see I could have a voice, I could have some input, and that on some questions, they just don’t know. 

There are so many different symptoms going on that could be many different things, and people react differently to drugs. I felt like it was an experiment in itself to find what medications and what combinations would do the best to get some of these symptoms under control.

How did you take precautions to avoid infection?

They gave me medicated body wipes I’d have to use several times a day. Any possible source of the infection, I had to control it. Wearing masks long before they became fashionable with COVID, hand washing – they urge that completely. If I ever left my room without my mask, they dressed me down and said, “You can walk the halls, but you got to have that mask on.” 

I learned a lot about controlling infectious diseases. Not that it prevented most of the things that got me. I also learned some of the things that got me had been living in my body my entire life. They said that’s probably true for the E. coli bacteria. After the transplant, I had a flare-up of the cytomegalovirus. They said that’s probably been in your body your entire life. If you have a functioning immune system, all that stuff is kept under control. But without it, they run rampant.

I had several visitors. They always had to be masked and keep some distance. It was a fairly spacious hospital room and they didn’t stay for a long time so that was quite manageable. 

How did you occupy your time during your hospital stay? 
Steve in hospital

What I appreciated the most is throughout this period I was able to leave my room and walk the halls with a mask. Later at my transplant hospital, it was more confined to quarters for 2 and a half to 3 weeks. But at my initial hospital, the first week when I was receiving chemo, I could leave my room with the chemo on an IV pole, but only walk through the cancer ward on the fourth floor and no further in case there was a spill. They knew how to deal with it, but the rest of the hospital, not so much.

To be seen, recognized, and acknowledged as a full-fledged ambulatory person and not just a sick patient in a bed really meant a lot.

Once I was done with the chemo, I explored every nook and cranny of that hospital. I was on different floors. I walked it from one end to the other. I walked out the front door to put utility bills in the mailbox up by the road. Walking was one of my basic survival strategies. It felt so good to get up and move and to see other people. 

After a couple of weeks, the nurses said, “We’ve been watching you and we think you’re walking about 5 miles a day, 3 separate times per day.” That just became my routine. The best part of it was, as I walked past different staff and nurses in different parts of the hospital, they’d recognize me and I’d recognize them. We’d wave, chat, and smile and we’d share a couple of stories. 

To be seen, recognized, and acknowledged as a full-fledged ambulatory person and not just a sick patient in a bed really meant a lot. I’ve told nurses that I hope they appreciate that something as simple as a smile or a wave or just some acknowledgment of recognition can mean a whole lot to a patient when they’re vulnerable.

Did anything help you cope with your diagnosis?
Steve began practicing mindfulness meditation and yoga before his diagnosis

Right at the top of the list would be the combination of practicing mindfulness meditation and yoga. The really serendipitous thing is about 2 months before my diagnosis, I received a flyer promoting a community education class on these topics. I thought, I’ve dabbled around with meditation and yoga and I’ve never done it seriously. I’m not very good at it, but I’m going to take this class. It was a time in my life when I really needed to incorporate that into my daily activity. 

About 8 weeks before my diagnosis, not knowing it was coming, I was meditating, I was doing yoga. One of the gurus of this approach, Jon Kabat-Zinn, has said we can change the way our brains are wired in as little as 8 weeks of systematic practice. It was about 8 weeks before my diagnosis hit. 

For most of my life, I could be mistaken for a chronically anxious, anal-retentive, obsessive-compulsive control freak. You would think cancer would throw me through the roof and it was almost the opposite.

I know a lot about staying in the moment, rhythmic breathing, staying in touch with my body, yoga, and the body scan. From the very first night in the hospital when things finally quieted down and Sue left and the lights go out, it was like, if the demons are ever going to come it’s at night. I did a body scan and I started with my toes, my ankles, and my feet. By the time I got to my torso, 15 minutes later, I fell asleep. 

I did that every night in the hospital and I never lost any sleep to anxiety. The nurses came in at all hours and people came in for medication checks and vital signs, so you can’t sleep in a hospital anyway. But it was never from fear or anxiety because I had this powerful tool to deal with it. 

Being treated like a person rather than a patient
Steve encourages cancer patients to be proactive
Steve emphasizes the importance of being treated like a person rather than a patient

I was deliberately a proactive patient. I sought out those relationships with nurses and when you’re there for 37 days, you have a chance to do that. They got to know me as a real person, and that was tremendously important for all the reasons we’ve just discussed. 

Every couple of days I’d be sent down to imaging for an x-ray or a CT scan and an orderly would show up at my door with a wheelchair ready to take me to imaging. I would say, “I’m walking 5 miles a day in the hospital. I know where imaging is just as well as you, so I’m going to walk.” Sometimes they would say, okay. Other times they would force me to get in a wheelchair. I really resented that because I was being treated as a generic patient and not the individual that I am. 

When I got to the imaging, [it was] kind of the same thing with the techs. I’m the 93rd person they’re doing today so they treat me very generically. It was very alienating till I got back to my room and my familiar nurses. It was like, okay, now this is home. You’re my people. We’re back on track.

What was it like being without your wife during your hospital stay? 

She was in the hospital with me for the first week, but then she went to a transitional care unit (TCU) for a month of rehab. We learned how to do FaceTime and various kinds of screen-sharing things, but it was very weird and very artificial. No one looks good on a little tiny phone screen. Some of the communication was kind of minimal, but we both had our own struggles to bear. 

She has a sister who lived in town, and she was a crucial go-between. She would take things back and forth, bring the mail to me, and the newspapers to her. Having someone like that is a lifeline to keep our lives connected. That helped a lot. 

What was returning home like?

It was a whole month after [Sue] left for her TCU and I went through my remaining month of hospitalization. After 5 and a half weeks, she came home 1 day before I did. Our home had been unoccupied for roughly 5 weeks. Open the refrigerator and it was like a petri dish, so we had to clean that out. 

Gradually we got back to a little bit of normality as I had to figure out what’s the next stage of treatment and where is this eventually going to go. She still had a fairly long recovery, but at least she could be home and maneuver a lot of the time. We shook our heads like no one was going to believe this happened to us. 

At the same time, there was that little storm that hit about 3 weeks into my hospital stay. That was an interesting thing to learn from my neighbors. One night they emailed me photos of 2 60-foot trees that fell down on our house while it was unoccupied. I was dealing with a tree service, contractors, and roofers remotely, trying to get the trees out of there and the house repaired. That all took care of itself. 

Trees had fallen on Steve's house while he was in hospital
60 feet tree fallen on Steve's house

In my family, there was an old saying that bad things happen in threes – my cancer, Sue’s broken leg, trees falling on the house. It should be clear sailing from here out. Not exactly, but it helped to think that way.

Stem Cell Transplant

Deciding the next course of treatment

Eventually, I decided if I went the chemo route and it didn’t work out, I would always regret not trying the transplant. And if I did the transplant and it didn’t work out, it would at least feel like I gave it my best shot, so I really committed to the transplant. 

What triggered my release from the hospital was my immune system came back up. 4 weeks in, they did a bone marrow biopsy and they said there was no cancer. Huge achievement, but this is a cancer that always comes back so we’re on to the next step. 

In a nutshell, they said, “We need to wait for the genetic and molecular analysis of your cancer, and that will put you in either a fairly favorable risk profile or an adverse risk profile. If it’s the former, you’ll probably get by with more chemo. If it’s the latter, you’ll probably need a stem cell transplant.” I thought, here’s a fork in the road. The decision will make itself. 

When the results came back, they said, “You’re actually in an intermediate category. You’re not in either one, so there’s no clear path forward. We’re going to send you to the University of Minnesota Medical Center where they do transplants.” 

I had a 3-hour tag team meeting with nurses, social workers, and a transplant oncologist. Thankfully, she just laid it on the line. She said “You need more treatment. You need consolidation after your induction treatment. Chemotherapy has a 5-year survival rate of 33%, but a lot of patients can’t tolerate how toxic it is so they have to stop before it’s over.” My thought was, I hope you have something better than that. 

They said the transplant has a 5-year survival rate of 50% but you have to first survive a 15 to 20% mortality rate from the procedure itself because it’s so brutal. That was like Russian roulette. Six chambers, one bullet. She said, “If you want the transplant, I’m happy to do it. Otherwise, I’ll refer you to someone else if you want to do the chemotherapy route.” 

I went back to my original oncologist and laid all this out. She reiterated the risks and potential benefits of both options, but she wouldn’t give a recommendation. Bless her, my wife Sue said to my oncologist, “If Steve was your husband, what would you want him to do?” And she said, “Get a transplant immediately.” That reinforced the notion of transplant. 

I got second opinions from doctors at the Mayo Clinic. Eventually, I decided if I went the chemo route and it didn’t work out, I would always regret not trying the transplant. And if I did the transplant and it didn’t work out, it would at least feel like I gave it my best shot, so I really committed to the transplant. 

Joining a clinical trial for stem cell transplants
Steve holding his donor cord blood for stem cell transplant

Then we needed a donor. They tested my one and only sibling, my brother. He was a half-match, which is workable but not ideal. The doctor said we could consider umbilical cord blood as a donor source. I was like, “Am I in a science fiction movie?” I’d never heard of that. They reassured me it was a real option. Again, I said, “Okay, you’re the expert.”

Which is better? They said, “We don’t know, but we have a clinical trial to find that out and if you want to join the trial, you can do so.” I read a 22-page consent form, asked some questions, and agreed to the study. 

I was randomly assigned to the cord blood arm of the study rather than the half-matched brother arm of the study. My brother was off the hook and at that point, I knew I would be headed for a transplant. 

I knew the facility, I knew the donor category, and it was a matter of staying in remission. I had a week of consolidation chemotherapy to keep me in remission until we could get to the transplant. 

Delaying the transplant

I went through a workup and tested all my vital organs, [which] I passed. I checked in for the transplant at a different hospital in early October. The day I checked in, I happened to mention to the nurse I had some symptoms like a cold or a mild infection. She said, “Let me get a doctor in here.” 

This doctor comes in, and he says, “I’m going to cancel your transplant. You have an infection and we want you to get over that infection before we do the transplant.” I must have looked really disappointed because he told this story that many years ago, they admitted someone with my symptoms, and administered pre-transplant chemotherapy. The patient became immunocompromised, developed pneumonia, and died before he could get to transplant. I said, “Okay, I like your logic.”

A week later, my infection cleared up. I came back and checked in. It started on, what they call, day minus 7. One week before the transplant, you have a countdown to the transplant date. 

Describe your stem cell transplant
Steve's stem cell transplant medical team

…you have this waiting game of, will one of my donors graft? How will I respond to the new immunosuppression? That begins a whole new chapter in the saga.

They administered cytotoxin, which I later looked up and realized it’s actually derived from the mustard gas used in chemical warfare in World War 1. Along with another medication called fludarabine and total body irradiation. That’s to wipe everything clean – wipe out my bone marrow, wipe out any residual leukemia, and prepare my body to accept the donor cells. 

Transplant day came. Talk about a non-event after everything that you go through. A stem cell transplant just means a nurse brings in a bag or 2 of blood, hangs it on an IV pole, attaches a tube, and flips a switch. That’s it. Once you get to that point, it’s the simplest thing in the world. 

Then you have this waiting game of, will one of my donors graft? How will I respond to the new immunosuppression? That begins a whole new chapter in the saga.

What advice would you give someone considering a stem cell transplant?

Read and try to understand as much of the write-up that they give you. Ask as many questions as you can. 

In my case, it was a relatively easy decision because I was going to have one of these two treatments anyway. I could have chosen and said I want my brother or I want the cord blood, but by going into this study, I left the decision up to their randomization process. Maybe I contributed a little bit to the progress of science but it was such an even trade-off that I couldn’t find a basis for making a decision myself. 

Both paths had different strengths and weaknesses. With cord blood, you’re a little less likely to have graft versus host disease because the cells are naive. They’ve never lived in another body but it can take longer to engraft with a half-matched donor. As someone once said, when his cells get in my body, half of them are going to recognize my body as foreign and there’s a much greater chance of graft versus host disease, but that tends to be earlier engraft. 

It was a real toss-up. If I’d had a clear indication that either was better, I would have gone for it. Since I didn’t, I said put me in the trial. It was a very passive trial. They followed my outcome along with several hundred other people and ironically they concluded that the half-matched donor was marginally better than the cord blood. But that’s a generalization. I was one person and my cord blood transplant worked tremendously. It couldn’t have been better. I got all the benefits and none of the downsides of cord blood transplants.

Life After Cancer

Did you not have any side effects from the transplant? 

Only if you overlook the first 3 months after the transplant. I was in the hospital for 27 days one week before transplant, and then 2 and a half weeks after transplant. They let me go earlier than expected, but I was doing reasonably well so I came home. 

Steve's health improved allowing him to return home
Steve was discharged from the hospital

I needed a caregiver with me for at least the first 100 days, preferably longer than that. Since Sue wasn’t entirely able to fulfill that role because of her own medical issues, I recruited a 5-week rotation. My brother came and stayed with me for a week, then an old college friend, then my brother came back, then my college friend’s wife, then my brother came back. 

For 5-weeks, someone lived in our house 24/7 in case something happened that needed a quick response. None of that really happened, but they drove me back to the clinic every day for the first month. 

It always started with a blood draw. They’d say, “Your platelets are a little low. You need some red blood. Today you’ll be here for 4 or 6 hours to top off your fluids.” Gradually those things became less frequent.

​​»MORE: Cancer patients share their treatment side effects

Post-transplant symptoms and treatment 

The first month, I had unimaginable fatigue from the transplant and the engraftment process and the residual effects of the medication, a fair amount of nausea, bone aches as the engraftment happened and just generally feeling out of sorts. 

I was on anti-rejection medication that was suppressing my immune system so the engraftment could take place. That left me open to all kinds of other infections. They talk about getting through the first 100 days, and I didn’t fully appreciate what that meant.

At that appointment 100 days out, they said, “We’re going to begin to taper the anti-rejection medication, but we’re going to do it very slowly over a 3-month period so that your body can slowly ramp up its own immune system. We don’t do it so quickly that graft versus host disease rears its ugly head.” 

I likened it to, I’m old enough to learn to drive on a stick shift, and you have to put the clutch down and the accelerator in a certain pattern. That’s exactly what they did. I still had a lot of side effects but nothing catastrophic. It worked out very nicely. 

Did your donors engraft after the transplant? 

Two days after I left the hospital, I came back for my first post-transplant bone marrow biopsy. That’s when they discovered one of my 2 cord blood donors was 99% engrafted. That was really early for a cord blood procedure. 

Steve wearing a shirt that nods to his successful stem cell engraftment

Before the transplant, I had this odd sensation that my life depended on – I thought of them as 2 kids, really mothers, who donated umbilical cords. I knew that one of them was a baby boy and one of them was a baby girl. I wanted to be on better terms with them, so I named them. I named the boy Ralph and the girl Gwen. 

They could determine 3 weeks after the transplant that Ralph had engrafted 99%. Gwen had kind of faded away, which is typically what happens. I felt bad using up 2 donors, but they don’t know ahead of time which one might engraft, and the protocol called for 2 so we did that. 

My oncologist later said Gwen, even though she disappeared, may have played a role because for a couple of weeks, they were both circulating in my blood system and they were competing for dominance. Gwen was like a sparring partner that toughened Ralph up and got him to be more effective in battling an infection. Then she went on her way and Ralph made a home for himself in my body.

The first year after the transplant

At the 6-month appointment, my transplant oncologist called me a statistical outlier because the likelihood of early remission, full engraftment, and no graft versus host disease happening together is less than a 10% probability.

At the 6-month mark, I was off the anti-rejection medication. I was starting to feel human again. At 9 months, I was invited to give a keynote address for a fundraiser for my transplant unit in front of 400 people on a sun-kissed July morning in an urban lake. It was really sweet. 

One year out, we got our childhood vaccinations redone from dead sources. Two years out, we got our childhood vaccinations from live sources, and by that point, it was obvious I was in the clear and have been ever since. 

At the 6-month appointment, my transplant oncologist called me a statistical outlier because the likelihood of early remission, full engraftment, and no graft versus host disease happening together is less than a 10% probability. The numbers are impressive, but when she said this is as good as it gets, that was the stamp of approval that I’d come through this thing. At that 6-month mark, I was able to accept the fact that I’d really made it and I was going to be around for a while

From cancer patient to cancer survivor
Steve shifted his mindset from cancer patient to cancer survivor

That was a crucial moment. That was the day I changed my understanding of my identity from a cancer patient to a cancer survivor.

It still felt like there was a shoe up there that could fall at any time. 

At that 6-month appointment, not only did everything look good, but I said to this oncologist I’d seen daily, then 3 times a week, then twice a week, then once a week, and then once every 2 weeks, “When should I see you again?” Her response was, “Maybe 6 months.” That was unnerving. It’s like attachment disorder. You’re letting me go. You’re cutting me loose. But she said, “Steve, it’s a good thing when you don’t need to see your doctor.” 

That was a crucial moment. That was the day I changed my understanding of my identity from a cancer patient to a cancer survivor. There could always be a relapse, all kinds of things could happen. This is the time that demarcates having cancer and treatment and getting beyond it. I tried to capture it in some writing I did, and the phrase I came up with was I was experiencing serene euphoria. I didn’t want to shout from the rooftops, I just wanted to quietly let this feeling wash over me, take it in, and embrace it. 

Shortly thereafter, I began thinking I need to find ways to give back. Therein I launched what is now a 5-and-a-half-year volunteer career. I’ll never repay the debt to the people who saved my life, but it’s a lot of fun trying and it’s very gratifying to do the things I’m doing in the cancer community.

How did your doctor’s positive words make you feel?

It was a great relief. I joke that I’d always been pretty good at taking tests as an academic. This was like a test, but unlike anything, I’d ever been through. Feeling incredibly fortunate, incredibly lucky. 

I’ve written a bit about, who gets cancer, why they get it, and who survives. You can point to all kinds of reasons that probabilistically make a certain outcome more likely, but I’m convinced there’s a certain element of random variation and luck in these outcomes. I’ve learned a lot about that. 

Frankly, as a poker player, I think there’s a lot of poker wisdom that applies to the decisions you make when you’re going through treatment. As in poker, so in medicine. 

You can make a good decision with the information you have at the time and you can still get a bad outcome. That doesn’t mean it was the wrong decision. It just means you had incomplete, imperfect information. Things are constantly changing, so don’t beat yourself up if the outcome isn’t what you hope for, you still may have made the right decision. That was helpful to think about it that way. 


Turning gratitude into giving back 

There’s a depth of gratitude, that I never experienced before. People always say to be grateful. That’s a great thing. That’s a mentally healthy thing to do. I understood it when I had this to be grateful for. That’s a big part of what fueled the work I’ve done since. 

It started with these peer connect programs where, as a transplant survivor, I would be linked with newly diagnosed patients to talk to them on the phone. For 2 and a half years until COVID struck, I did this back at my transplant hospital. 

I’d walk into patient rooms and say, “I’m a volunteer.” They go, “Yeah, yeah, what now?” I’d say, “But I’m a transplant survivor.” Suddenly they would perk up. They would sit up straight, they would invite me in, and we’d have these incredibly personal conversations between 2 complete strangers. But we shared the bond of transplant. That’s quite a bond to share.

There’s a depth of gratitude, that I never experienced before. People always say to be grateful…I understood it when I had this to be grateful for.

The importance of trusting your medical team

Be as well-informed as you possibly can be. Be a proactive patient. Trust your medical team if they’re trustworthy. And if they’re not, if you don’t have a comfortable relationship with your medical team, think about whether you need to make a change because that’s really critical. 

All kinds of sources of information are out there, but no one knows you the way your own medical team does in terms of the specifics of your disease and your mutations. You really have to put your fate in their hands and hopefully, you have good hands to put them in. I certainly did. 

What led you to write your memoir?
Steve with his memoir about his cancer journey

I found great benefits from writing my story. I started sending out emails to people. I wrote 65 very long emails to a group of roughly 100 people over 18 months and turned them into a memoir. That was never my plan. Six years later, I’m still writing quarterly updates. I’m working on another book, so writing is obviously therapy for me. 

It started by wanting to keep people informed, but I quickly realized needing to tell a coherent story of what I’m going through requires me to understand it better than I have up to this point. It’s kind of like the old adage – if you really want to learn something, teach it. That’s what this felt like. If I’m going to tell my email recipients what’s going on, I need to get it straight myself.

The social scientific part of me enjoyed that process of constructing a narrative that made sense. Initially, so they knew what was going on, but [then I] realized this is therapeutic for me. I’m a sense-maker. If I can make sense of something, even if it’s bad, I can deal with it. If it doesn’t make sense to me, then I’m at loose ends. 

The power of mindfulness and meditation
Steve's life was transformed by mindfulness, meditation and yoga

If you can just live in the moment, you’re going to have as rich a life as you possibly can have and the outcome will be what the outcome will be.

I would encourage people to incorporate mindfulness and all its different manifestations. One thing I learned from mindfulness had to do with what’s called scanxiety. You have an upcoming test or scan and people get understandably anxious. 

It occurred to me that if I get all bent out of shape because I have a test or a scan coming up in 2 weeks and it turns out fine, I just wasted 2 weeks of my life getting tied up in knots over something that hasn’t even happened yet, which is really odd if you think about it. If it turns out that it’s bad, that proves to be anxious doesn’t prevent a bad outcome. So there’s no reason to be anxious if you can logically train your mind to think that way. 

I got pretty good at doing that. People are bedeviled by fear and anxiety. I’m not implying in any way it’s a simple thing, but to whatever extent you can live in the moment and let each moment come and have some confidence that you and your medical team will know how to deal with that moment if and when it comes…It doesn’t guarantee that all is going to go well, but it’s a much happier way to pass the time. 

If you can just live in the moment, you’re going to have as rich a life as you possibly can have and the outcome will be what the outcome will be. It’s like a poker hand. You might win, you might lose. You do everything right and have a bad outcome. You might be lucky and have a good outcome, but that’s in the future and you can’t know the future. So don’t get into a wrestling match with things that haven’t even happened yet. Keep your feet anchored in the present moment. 

Everything that goes along with mindfulness meditation and yoga is a really good way of embodying that. As you work through the yoga poses and the breathing, it really keeps you centered. I don’t want to proselytize because that’s just not for some people, but I’ve heard a remarkable number of patients in the cancer community endorse the notion of mindfulness meditation and yoga.

Connecting with people through humor

I hung onto my sense of humor relentlessly. That was really important to me, and that’s not a joke. Every email I sent out, I ended with a joke because I wanted to lighten the burden of these sometimes very dire stories I was telling people. 

Humor kept me connected to people. There were people who I’d known on and off throughout my life. They didn’t know how to relate to me as a cancer patient, but they knew they could share a joke with me and that maintained our connection. Humor can be a very serious survival mechanism. 

Do you think positive thinking led to your outcome?
Positive thinking helped Steve mentally overcome cancer challenges

People gave me credit for my positive thinking and that’s why I had a good outcome. I never liked that. If I hadn’t made it, would they say I wasn’t positive enough? I think positive thinking is fine if the patient can find their way to a version of it that works for them. But if it’s other people telling you you have to be positive, what they’re really saying is, you can’t have any negative emotions. You can’t have down days, you can’t express this or that, and that’s not the way it goes.

Cancer patients need as much agency as they can possibly find. They don’t need to be told by other people how to react. So positive thinking is fine if you find your way to it and it works for you, but not as a gospel that gets hammered into people’s heads. 

I’ll never know if all those strategies I employed contributed to my positive medical outcome. I do know they allowed me to live as fully, through all these days and times and processes, as I possibly could. That sustained me.

Cancer patients need as much agency as they can possibly find. They don’t need to be told by other people how to react.

Discovering a common core humanity in everyone

I witnessed a degree of resilience in a broader span of people than I would have imagined. It’s striking how tough people can be in these circumstances. Many of the people that I talk with, especially in the transplant community, had a much tougher ride than I did. Yet, their ability to find their own coping mechanisms and persist is really quite remarkable. 

This may sound corny, but I’ve seen a lot of people at their worst and it’s attuned me to the fact that there is a common core humanity. It doesn’t matter if the person undergoing this process is male or female or an ethnicity or what have you. At some fundamental level, we’re all pretty similar and I didn’t quite fully appreciate that until this process.

Sociologists talk about how in social life we present a certain self to others. We’re like actors conveying through impression management a certain sense of who we are. That’s pretty hard to do in a hospital bed when you’ve got all these things going on. 

I’ve had people in conversations where the guy says, “I really like talking to you, but I got to go throw up. Can you hang on till I’m done?” He goes and throws up and comes back and we continue our conversation. Well, there’s not much presentation of self going on. You’re down to the core sort of reality of who people are. It kindled in me a tremendous amount of empathy that I hadn’t quite found, along with gratitude, and the ability to empathize with what people go through.

I have to put in a pitch for a short video called Empathy by the Cleveland Clinic. For about 4.5 minutes, a camera pans through a hospital, these people are walking by, and you can’t tell from their facial expressions what’s going on. There’s a little caption underneath that says, “Just learned his condition is terminal.” The next person comes by and it says, “Found out his mother’s going to survive.” You see these people from the outside and it’s not clear what’s going on, but it could be a million things. It’s a powerful video. 

This may sound corny, but I’ve seen a lot of people at their worst and it’s attuned me to the fact that there is a common core humanity. It doesn’t matter if the person undergoing this process is male or female or an ethnicity or what have you. At some fundamental level, we’re all pretty similar and I didn’t quite fully appreciate that until this process.

That reinforced this empathy I was finding from the range of people I was talking to, the diversity of those people. Yet, underneath that diversity, there’s a small core element of humanity that shows up in everyone. It was very moving.

The value of caregivers

Caregivers oftentimes absorb more stress than patients themselves, so kudos to all the caregivers out there. The importance of caregiving needs to be acknowledged and recognized.

What advice would you give to other cancer patients?
Steve encourages everyone those with cancer to be proactive patients

For patients, they say it doesn’t build character as much as it reveals character. It doesn’t change you into a totally different person, but it calls for the kind of person you are. Many people have learned coping strategies, survival mechanisms, and resilience strategies. Something like this really puts them all to the test. 

So if you can find those, if you can marshal those, if you can bring them to the fore, surround yourself with a supportive community, get yourself a good medical team, try and find a reasonably optimistic and hopeful stance and maintain that stance through whatever coping strategies work for you, being as physically active as possible, doing mindfulness meditation yoga, being a proactive patient, don’t be a dependent variable, be part of what’s going on, have a belief system you can fall back on…

For a lot of people, that’s religion. That’s not especially my approach. I had a scientific secular worldview that was filled with curiosity and interest and wanting to understand how things work. When my doctors would explain it to me, then it was like, now I understand where I’m at and where I’m going. 

Writing your story in whatever form works for you. I’m doing a writing workshop with the Leukemia Society right now and people are having some incredible insights writing and sharing it with one another. It’s a powerful tool. 

I could plug a book by a doctor named Annie Brewster called The Healing Power of Storytelling. It’s the best thing I’ve ever read on how telling your story can help maintain your humanity in the face of whatever life throws at you.

Acute Myeloid Leukemia Stories


Sasha T., Acute Myeloid Leukemia (AML)

1st symptoms: Easily bruised and swollen, painful hip
Treatment: 4 chemo infusions, bone marrow transplant

Luisa L., Acute Myeloid Leukemia (AML)

Cancer details: Most common type of acute leukemia in adults
1st symptoms: Painful hives on legs & migraines
Treatment: 3 cycles of chemo, total body radiation & stem cell transplant

Hayley A., Acute Myeloid Leukemia (AML), M5

Cancer details: Most common type of acute leukemia in adults
1st symptoms: Severe fatigue and excessive bleeding after oral surgery
Treatment: Chemotherapy, bone marrow transplant

Nicole T., Acute Myeloid Leukemia (AML)

1st symptoms: Severe itchiness, night sweats, fatigue
Treatment: Chemotherapy, bone marrow transplant
Mary Clare

Mary Clare B., Acute Myeloid Leukemia (AML)

Cancer details: Relapsed but in remission after 2nd transplant
1st symptoms: Extreme fatigue, upset stomach, bad & persistent headaches
Treatment: Chemotherapy, radiation, 2 bone marrow transplants

Leslie T., Acute Promyelocytic Leukemia (APL)

Cancer details:A sub-type of AML
1st symptoms:Fatigue, joint paint, migraines, bruising easily, trouble breathing
Treatment:Chemotherapy (Atra & arsenic)

McKenzie R. Acute Promyelocytic Leukemia (APL)

1st symptoms: Repeat sinus infections, abnormally heavy menstrual cycle
Treatment: Chemotherapy (ATRA oral pill & Arsenic trioxide infusions)

Michele G., Acute Myeloid Leukemia (AML)

1st symptoms: Bruising, tiredness, shortness of breath, itching

Treatment: IV chemo, 2 stem cell transplants, targeted chemo pill
Acute Myeloid Leukemia Patient Stories on AML Diagnosis, Treatment & Side Effects Acute myeloid leukemia or AML is one type of leukemia, a cancer of the blood and bone marrow that happens when the bone marrow makes an abnormal type of white blood cell called myeloblasts, red blood cells, or platelets. It’s the most common
Renee F. feature profile

Renée F.

Symptoms: Bruising
Treatment: Chemotherapy, radiation, allogeneic bone marrow transplant
Steve B. is an AML Cancer thriver who experienced a Stem Cell Transplant.
Steve B. Diagnosis: Acute Myeloid Leukemia (AML) Symptoms: Low white blood cell count Treatment: 7+3 chemotherapy, pre-transplant conditioning, stem cell transplant