Switching back to Decaf

I’ve had an interesting experience with myself last week: I switched to decaf, after having caffeine creep into my coffee consumption more and more recently. After my treatment, I abstained from caffeine for a while, and eventually added a spoon of caffeinated coffee into my own special mixture I’d like to call “third-caf”, made up of two spoons of Folgers decaf and one spoon of Bustelo. I really liked the taste.

my coffee stash – I don’t like running low, it’s a real luxury for me

Over time, a second spoon of “real” coffee crept in, and over the last three months or so, I found myself on fully caffeinated Bustelo again. It’s the only vice I have left, and I didn’t see it doing any harm to my system, nor did I receive any adverse messages from my body. Until last week, when I had a full pot of decaf.

Julia doesn’t drink coffee, because of the caffeine, but she does enjoy the smell of a fresh cup of Joe or a newly opened pack of coffee. With decaf, she even joins me for a cup sometimes (otherwise she’s more of a decaf tea person). I liked the pure decaf taste, and also didn’t think it would do anything adverse.

Then however one of those numb non-localised headaches came to visit me. Those you can kind of live with, but life would certainly better without. Many familiar with this phenomenon will quickly recognise it as caffeine withdrawal syndrome. Apparently it’s caused by an increased amount of blood going to the brain, or rather the “normal” amount of blood going to the brain.

Caffeine has the bad side effect that it actually restricts blood flow to the brain, causing a kind of “controlled stress”, with the effect of us being more alert. That’s why we like it so much. As we indulge on caffeine, our body gets used to it, as we get used to its effects. When we stop taking it, our body needs to get used to that lack of stress induction first, which can cause a whole host of effects in some users:

  • headaches
  • anxiety
  • depression
  • difficulty to concentrate
  • flu-like symptoms
  • fatigue

There is of course a scale to this phenomenon, and mine was a very mild case, yet strong enough to make be aware. A few days of complete coffee abstinence followed, and now I’m back on the full decaf (which depending on where you get it from, and how strong you brew it, still contains a small amount of caffeine; I remember a Starbucks’ decaf [on the slim chance they actually have one brewing] is strong enough to make me feel the caffeine).

I’m telling you all this because today I tried to smuggle a spoon full of caffeinated Bustelo into my daily mix, thinking what a nice treat the flavour variation might be. And while I enjoyed that taste indeed, the caffeine effect wasn’t working for me. It’s fairly new behaviour for me to react immediately and honour that feeling in my body by pouring out that Thermos and making myself a fresh pot of 100% decaf.

Back in the day I would have just “started doing that tomorrow” and continue drinking the mix I had readily available, suppressing my feelings with thoughts like “don’t be such a wuss and get on with it, you’ll be fine”. Every addict knows that voice. The real power is in breaking it there and then, and NOT continuing with current behaviour and acting immediately. That’s what puts you in charge, and that’s what makes a change and a difference.

So yes. I’m back on the decaf, and I’m proud of being aware of what just happened there 😎

Ostomies are Lifesavers 😍

I had an email from the friendly folks at ConvaTEC (or rather Ostomysecrets), purveyors of fine ostomy supplies and apparel. I’m still on their newsletter ever since my ostomy days so I still get updates on their news. Although I no longer have a need for those supplies, I really like the occasional reminder of what I needed during my ostomy time.

Every first Saturday of October is the worldwide Ostomy Awareness Day, and 2020 marks the 10 year anniversary of this ritual. I had no idea until literally this year.

As such, the whole month of October is classed as Ostomy Awareness Month, and CovaTEC had these t-shirts in stock for $5 plus shipping. I couldn’t resist and bought several, both to support the project, and to send to friends around the globe so they can celebrate with every current, co- or ex-ostomate in style.

Check out this link to get yours too, if they’re still in stock.


What this means to me

October is a special month for me in regards to ostomies: I had my colostomy successfully reversed and turned into an ileostomy in the month of October. I had it for 9 months by that point, my hernia was giving me grief, and although we had always planned to reverse it, you’re never sure if that’s how things will turn out when you go in for the procedure. Lucky for me it went well, and I came out with an ileostomy. Dr. Szomstein (my colon surgeon) did this to make sure the that the lower part of the connection could heal properly.

After 10 more weeks with my shiny new ileostomy, he could reverse that too – and I am ostomy free since December 2017.

I wouldn’t have survived my journey without the two ostomies. My cancer had wreaked havoc to so many parts of my GI and urinary tract; we had to literally divert everything we could so I wouldn’t continually get infected. It was a tough time, and I remember seriously disliking the effects that ileostomy had on my body. It was far worse than my colostomy: I felt dehydrated all the time, I was constantly craving salt because my body didn’t get a chance to metabolise what I put in, and it felt like my stoma was in constant use.

At least with my colostomy, I had “quiet” periods that I could use to change the wafer in peace, and my skin could recover properly. This was not the case with my other stoma. The constant acidic leakage from my ileostomy meant that I had strong skin irritation with literally no chance for my skin to recover. I remember worrying that it might be difficult to close up the hole due to the raw and itchy skin, but thankfully that was not an issue.

While it was a nerve-wrecking ritual every morning, both of these contraptions meant that I was neither bed bound nor restricted in my daily movement routines: I could take walks, I could take relatively long bike rides, and once taken care of in the morning, there wasn’t much to worry about for the rest of the day or night – apart from empting the bag regularly and keep an eye on it. Much like with any task that seems impossible at first: if you have the right tools to do the job, dealing with the toughest tasks becomes possible.


So there we go! Let’s celebrate Ostomy Awareness Month together, with or without a shirt. Let’s think of those who are dealing with ostomies every day, patients and carers alike, and purveyors of ostomy supplies.

You’re all heroes in my book! 🥰

How Immunotherapy saved my life by Jay Versluis (that’s me!)

I gave this motivational talk at the Oncology Symposium 2019 in Hollywood, FL. It gave me a chance to describe what it’s like to survive cancer when the common treatment methods fail, and how immunotherapy (specifically Keytruda) saved my life. This is an abbreviated version of the story I’m telling in my book BROKEN BOWELS.

I didn’t have notes or a presentation, and did all this from the top of my head, while taking care of the event streaming and tech. Perhaps I’ll make a Power Point for next year 🙂

Molecular Intelligence with Simon Abi-Aad

I’ve filmed this presentation at the Oncology Symposium 2019. Dr. Abi-Aad is talking about how to use Molecular Targets to personalize medicine, using genetic sequencing.

Dr. Simon Abi Aad is board-certified in internal medicine, medical oncology/hematology and has special interest in public policy and cancer care delivery to patients. Dr. Abi Aad earned his medical degree from the Université Saint Esprit de Kaslik Faculté de Médecine (Jounieh, Lebanon), did a research internship at the MD Anderson Cancer Center and completed his Internal Medicine Residency at the Icahn School of Medicine at Mount Sinai – St. Luke’s Roosevelt Hospital Center (New York, NY) with extensive rotations at the Memorial Sloan Kettering Cancer Center. After his residency, Dr. Abi Aad was awarded a Fellowship in Hematology/Oncology at the University of Miami – Sylvester Comprehensive Cancer Center (Miami, FL).

Checkpoint Immunotherapy and how it works – with Kenia Caballero

In this presentation, one of my oncology nurses Kenia Caballero gives us an overview on how immunotherapy works. She was one of the many wonderful nurses who administered both chemotherapy as well as immunization drugs while I was undergoing treatment in Mount Sinai Miami Beach during 2016 and 2017.

I’ve filmed this talk at the Oncology Symposium 2019 in Hollywood, FL.