Remission: Year 1

The results are in! No APML detected.

0 Cancer Test Results

I’ve reached my first year of remission. I say this humbly with gratitude and hopefully dodging a jinx. My impressions…

I get superstitious like this. Could it have been the Kobe finally passed joke (RIP King!) that I might have repeated that swung my karma? I wonder if maybe it was the year run on Cumby’s breakfast sausage sandwiches, one month of Dunkin Maple Coffee, or I gulped the water while swimming in the bay. Maybe I got zapped by the nuke plant miles from my house, my monitor, or phone.  Nah! More likely, it was living a stressful life and/or the ten years of smoking I did when it was cooler to do so.  The point is, although no cancer is currently detected (nice oncologist phrasing, eh?), the specter of it is here to stay.

I have been doing my best to live with it mentally.  Humor helps, as does learning what you can control, prayers and meditation. At the end of the day, though, the biggest ground for me is the thought that I’m here right now with you, and I’m ok. That is what matters. Not what did happen or what could happen. I sometimes fail miserably with this line of thought, but I keep trying. Try is something I can control.

I’ve found many connections in the cancer community, although it’s a double-edged sword. Everybody’s experience is different, but we’re all scared shitless. It is possibly the worst common ground you could ever find-but it helps. I’ve found great happiness there. There are so many laughs and good souls. But, I’ve also felt sadness with the pain and passing of others.  Norm MacDonalds’s recent passing took the wind right out of me, as do the people that suddenly disappear off the internet. Sometimes you see something on their passing, but more often, not.  You want them or their loved one to know you get it and cared. Survivor’s guilt is a thing, but so is compassion. It is worth the tradeoff. I’m a better dude because of it.

Physically, I’m much better, although some things may not go away. I have much more energy and some stamina. Fatigue still happens, but not as much as it used to, and you become better at managing life around it. My stomach issues evolved but are now manageable. The added bonus is what I can’t eat wasn’t good for me to begin with. I occasionally cheat, though, and pay the toll. Paying the toll makes it so much more worth it. I still have some neuropathy in my feet, but it helps mitigate the plantar fasciitis so I can exercise more (winning!). Yin and Yang. See the pattern developing in all this?

Oncology visits have evolved. I have become a member of my oncologist’s B-squad of patients. The B means boring, and that is good. My oncologists have become a bit more distant, stuff gets pushed back to my PCP, and there isn’t much urgency anymore. It is hard to let go, but these are good developments. The memories evoked, sights, smells, and sounds I see in the clinic haunt me, but it keeps me grounded in being the boring compassionate patient I want to be.

It’s been over a year. That may not be true next year, but I’m here now. That’s what matters. Hope this helps somebody that is just starting.


I have been practicing meditation for over a year, and it has changed my life for the better. I am a novice meditator at best, but it has given me a better ability to pause and bring myself back to the present moment. This has helped me deal with the day-to-day stress of modern life, be more mindful of myself and others, and deal with Cancer treatment and (hopefully) remission.

My life before meditation was stressful. I worked in two high-stress fields concurrently through most of my thirties into my early forties. This was also the anxiety era where everybody was getting sucked into social media and the politics of the hour. I didn’t do anything about it other than therapy, take an occasional vacation, and stuff my face.  Next came the trauma of leaving a business and friends I loved. Then came the full stop-cancer and a resulting near-death experience. Now I had something to really eat about!

Meditation before this was some woo-woo thing to me. It was right up there with acupuncture and yoga.  My only prior experience with it was with a Social Studies teacher who I had always thought had our class practice it to give them a moment of peace. I had tried yoga but had a bad experience sitting on a tennis ball, and the Cambridge session we attended was a fart-fest. I had some success with acupuncture, I think-or maybe I thought? You get the idea. None of this was a hard no, but reasonably questionable, so I always extended the same opinion to meditation.

So..back on track. I had cancer which resulted in a stroke. Scary stuff, and I wasn’t exactly handling anxiety well to begin with. You’re kind of trapped, though, in that you don’t have a lot of options. Cancer patients just learn to do. In my case, it was getting stuffed into an MRI, which freaked me out (not the MRI’s fault, I was fat).  So my solution was trying to match the sounds coming out of the MRI with songs I knew (I’m convinced General Electric might have lots of Zeppelin or Metallica fans-know the riffs and MRI sounds you know I’m talking about). My mind was constantly in that moment trying to come up with a song. Anyways, I only later would learn what I was actually meditating, just strangely.

My formal practice started with the suggestion of somebody at the hospital and my wife. I downloaded the Calm app on my iPhone and started listening to it while I was in treatment or at night to help get to sleep. The sleep stories were the draw at first, but then I started a series of guided meditations. I was an outpatient at the time, and there were still stressful things going on, PTSD, but this seemed to help. I was more patient and could catch myself more before going 0-60 mph in one second on the anxiety highway. I felt happier and started noticing moments and the good stuff and people more.  It made me want to learn and practice more, so I started reading about it and looking into other meditations.

Where I’m at now is still the beginning but far better than I was before. I practice guided meditations (still on Calm) once or twice a day. I just discovered walking meditation. I’ve got so much more to look into and I enjoy doing it. It feels good to go off the front line for ten minutes or so and just sit and be. You should give it a shot. It might help you too.

If you’re interested, Real Happiness, 10th Anniversary Edition: A 28-Day Program to Realize the Power of Meditation by Sharon Salzberg , is a great place to start. Buy in is cheap, and they have a great approach to helping learn the basics.

Stress and APML

I’ve been thinking about the cause of my cancer a lot lately. APML is a weird one, with no direct link to the obvious risky behaviors I undertook, starting with a decade-long smoking habit through my 20’s and during the same period working a few months in a warehouse and factory job close to all kinds of toxic chemicals.  I also live within a few miles of a nuclear power plant. I ate red M&Ms, washed down pounds of Doritos with gallons of Mountain Dew, and stood way too close to the microwave if edge-case conspiracy is your thing.  My oncologists rightly shrug when asked, as science has yet to prove a cause with only the hematologist weighing in that weight may have played a role. Other APML patients are equally lost, but there seems to be one common thread, stress.

First and foremost, there is no scientific data that links cancer to stress. There are many suggestions that it might be, going as far back to physicians in ancient Greece.  Stress does lead to behaviors that have clear linkages, such as alcohol abuse and smoking. You can find countless studies on pub med and the internet that are mostly inconclusive in their findings. So, as a smart data-driven person, you probably should hedge your bets towards, they don’t know, with a nod toward the fact that time, reputations, and money has been expended looking at it. Do not look to it as the sole cause of cancer, and do what your doctor tells you.

I believe there is a linkage between stress and my cancer. Our fight-or-flight responses are constantly at work, more so during times of stress, do all kinds of things to our bodies to help them adjust, starting with releasing hormones to get the body moving. Generally, blood pressure, heart rate, and blood sugar rise to meet the perceived threat. If it’s chronic stress, there are proven linkages to digestive, heart, urinary, reproductive issues, and most compelling to me, a weakened immune system.  I don’t think it’s a stretch to think this likely extends to our genetics and may cause a change that kicks starts creating cancer cells. This belief has grown as chronic stress seems to be the common thread in adult APML stories, including my own.  It is anecdotal for sure, but it has become more compelling after reading or hearing many APML stories.

Reducing stress is a no-brainer, but the problem is motivation. There is no much in our lives that are not conducive to reducing it. You know this.  Good thing cancer is an excellent motivator. I’d say it’s a good quality, but cancer doesn’t have any. So what I can say is, you don’t want it, and I think most APML people feel it’s ok for you to learn from our experiences and not have to learn from yours.

I have found a few things that have helped me deal with my stress.  First, take stock of it. Take a look at your life and see the incremental things you can do to help. Small things like limiting screen time and going for a walk helps. Maybe lose that FB account. Second, if you had big things in your life happen, get help. Professionals are educated and are emotionally invested in a different way than your friends and family. They can also prescribe meds. Third, meditation has changed my life. It isn’t hocus-pocus. It takes patience and practice but has helped me step back and evaluate my thinking. I have used an app with guided meditations for well over a year, and it has well-surpassed the cost.

I hope this helps.

As per my last cancer posts, this is the usual disclaimer. I’m not a doctor or licensed medical professional. Nobody should construe what I post as medical advice. I’m just an APML patient trying to help others through my experiences.

Cancer Books That Don’t Suck Part 1

Cancer reading is hard. It is not the most uplifting thing, and like other self-help books, it is hard to sort through what is authentic with what is not. Does the author want to help you, or are they starting a cult or looking to make a fortune? The amazon reviews don’t really help sort that. So in the spirit of limiting other’s exposure to douchebaggery, I thought I’d start pitching books I find authentic and helpful to me.

The first book is David Goggins’s Can’t Hurt Me: Master Your Mind and Defy The Odds.  It is not a cancer book but can definitely help patients build their mindsets during the storm. This is most definitely marketed as a tough-guy tome, but there is so much more going on under the hood.

Let’s back up a little for context.  I was terrified, felt fragile, chemo-brained, and mentally tired when I left the hospital. I had eight more months of treatment ahead of me if things went well. The hospital stay had given me a bed-sore that quickly became an infection. This would develop into something requiring a painful surgery that would take a long time to heal due to Leukemia. It would be a long haul, and I had no trust in my health or body. Things were a little grim. A relative who has cancer reached out to help and sent this book.

I started reading it and got hooked as the best thing to distract you from your issues is somebody else’s issues, and good lord did David have them. He also was a Navy Seal. He overcame many issues and a challenging career with a highly developed mind-over-matter mental toughness, but what is most valuable is his thought process in looking at each challenge. It helped me reframe my stuff in a way that was tangible and accessible to me. Things stopped being how I’d like them to be, but how they are.  It helps solve problems, push through them, or in some cases, don’t cause them. This didn’t fix anything and I was by no means entering the next Iron-Man contest or becoming CEO, but it helped me mentally navigate some real humps and bumps. It still helps me today, and I think it could help you too.

The second book is Suleika Joaouad’s Between Two Kingdoms: A Memoir Of A Life Interrupted. I picked up this during remission after hearing her speak on a podcast. She struck me as authentic, and when I dug deeper, I saw that she had been writing about her cancer experiences for some time. A few articles and blog posts in, I definitely wanted to read the book.

The book is skillfully written and covers Suleika’s journey from illness to recovery and its impact on her friends and family. It doesn’t pull any punches, and you will feel some of her pain reading it if your heart isn’t made of rock. It also travels a bit to her life before and after, giving context and a destination. It is honest, authentic, and well regarded.

The book is priceless to me because her experiences and thoughts resonate enough to feel like a sanctuary. I see hope through example because of her ability to communicate it so well.  Her exploration of her own and other’s life-changing events helped me consider my own.  This book will be important to me for many years to come. If you’re out of the storm and a little lost about what is next, read this book. It will help.

Ultimately the events of the last few years have been a terrible lesson in being present-and not just present in my own life but in the lives of the people that I love. Tomorrow may happen or tomorrow may not.

Synchronicity To Belief

I’m no missionary. I have never been a fan of it, and my vocabulary is too sprinkled with words that don’t lend themselves to it. That being said, I do have some evidence for the jury. I’m not asking you to believe in a particular god or system of belief. Just consider this data that strongly supports believing in something!

A little over a year ago, I was diagnosed with an acute leukemia (APML), resulting in a stroke, and underwent a long treatment to remission.  I got reflective, which is pretty common with all cancer people, and started taking stock of the life events leading up to cancer and during treatment. The first thing I noticed is there were a lot of unlikely things. Take a look.

Handwritten note I took when my PCP reported low blood counts. Found it a year later.
A note I wrote myself while listening to the phone message from my PCP telling me something was wrong. Found it over a year later when I returned to the office.

The events:

  • I nearly talked myself out of the blood test that saved my life. I can see the stoplight I was sitting at, considering whether to take a left to the lab or banging a right for home.  My normal pattern is to procrastinate for anything like this as I’m not a fan of long waits or getting poked.  I didn’t, though.
  • Rare cancer and rare stroke. I won’t post percentages, but my cancer and the rare occurrence of something passing through a PFO and causing a stroke is astronomically low. The odds of those two things in combination killing me is high. You can play with the math, but I wouldn’t bet the house.
  • The cycle from diagnosis to remission went well. The nurse-practitioner saw the results of my blood test and told me to get to the hospital immediately.  The community ER doctor said it could be Leukemia and the community Oncologist followed up on that thread to correctly diagnose me with APML. The Oncologist and a family member (who survived 911) got me into the BIDMC 7 Feldberg clinic in Boston, where I could get the best treatment from expert doctors and nurses in a facility that could handle APML. I had the stroke there, which was the ideal place to have one-if there is such a thing.  I was a system analyst in a hospital for years, and stuff doesn’t usually work out this well on paper, never mind reality.
  • I married the right person. Not only is she loving, smart, and beautiful, but she’s also a great nurse who understands the business of medicine. She handled the crisis well and was right there with me at every step. She was my rock. I would have broken without her love and strength. Her medical knowledge side-stepped many pitfalls. We’re also not in the poorhouse. I would have cheaped out and gotten the cheapest insurance. I’m darn lucky she said yes, never mind her possessing all these qualities.
  • I had three big unexpected angels along the way. The paramedic that sat with me in the back of the ambulance, my go-to nurse, and a distant relative. The paramedic was a survivor who was honest about what was going to happen and added the first building blocks of a mindset to get me through it. My nurse was with me through the worst. She was balancing getting her NP, planning a wedding, and caring for other patients.  She never missed a beat and advocated for me every day. The third was a distant relative who reached out with a letter and book reinforced by a few key conversations. He is the warrior. Three different people out of leftfield did so much.
  • I was admitted just before Covid and did my outpatient through Covid. Pre-Covid admission allowed my wife and family to be there during the initial storm. Covid lock-down made what would have been an awful daily winter commute from Plymouth into Boston for outpatient treatment just a 50-minute drive. Normal traffic would have been stressful and tiring to all involved; never mind Cape traffic later on!
  • I was working and still work for a great company with excellent people and benefits. Prior to this job, I could have been traveling, working, and living the less-than-ideal work-life for being sick. Things worked out well and happened for a reason. I truly believe this.
  • Our parents are awesome and retired.  They were there for us every step of the way and did the driving during treatment months. They also did this during Covid at great risk to themselves.
  • Catholic Mass on Sunday was an escape in the hospital. When you’re in the hospital, you’re not on your clock. However, the one thing they won’t mess with is church. So I started by putting it on for thirty minutes of peace but started listening as well. It was less about the rituals and more about some of the things that came up in scripture. There was mindfulness to it. I continued watching as an outpatient, and it became a peaceful, comfortable place to be. I then started thinking about it while undergoing chemo or some of the less pleasant things. It helped, and I would never have found it unless in that exact situation again.

I was a lax catholic more prone to St. Mattress on Sunday and hanging on a small thread of belief to uphold family holiday rituals and the “just in case” escape clause I formed in my mind.  There was nothing tangible in my forty-plus-year life experience to drive a higher belief. Now, through some visible synchronicity of unlikely events, there is for me. None of this stuff was likely, never mind the combination of it all. These things came together for a reason. I hope you see it too!