(Warning: This blog post is non-technical but purely personal. I write openly about my current health issues. This blog might be triggering for people who struggle with, or lost dear ones to, cancer and other similar diseases.)
I was recently forced to cancel two speaking engagements at the last minute – almost literally the last minute. I have also cancelled all upcoming conferences, and withdrawn submissions for events that had not finalized their session selection yet. And I will not submit to any events for the foreseeable future.
This is not something I do lightly. I hate having to cancel any speaking engagement, I hate it even more when I have to do it at such a late moment that the organization will struggle to find a good replacement, and that attendees will be disappointed to see my session removed from the schedule. But health trumps volunteering for the community, and in this case my health left me no choice.
Due to my many years of speaking, blogging, and other ways of spreading the love for execution plans, I am aware that I am, as I sometimes call it, world famous in a very tiny niche. I felt I had to make a choice. Either keep the details of my health issues private and limit all public statement to “health issues”, or be honest and open about my situation. Those who follow me on Twitter will already know that I have said more than just “health issues”. But a tweet is not long enough to really explain what’s going on. Hence this post.
Which, as I am writing, is turning more and more into a diary type recollection of the process I went through. Which may or may not be interesting to others – don’t worry, if you don’t read it I will not be offended. If you want to know my condition without having to go through the entire process, then just skip to the end, to the “Diagnosis and treatment” heading. Or if you want to help, skip to the “What can you do to help?” part.
After returning from a wonderful vacation in the Czech Republic, my first symptoms were almost undetectable, as they started very small and seemingly innocent.
I often felt tired. Work at my clients was slow so I just clocked a few less hours and retreated to the couch most afternoons. I was not concerned, the reason for being tired seemed obvious to me because I didn’t sleep very well, which is not uncommon at all on my age. I was convinced it would pass soon enough.
But it didn’t. It got worse. Gradually, almost unnoticeable. More and more naps. And then I started to get physically tired too. Feeling short of breath after climbing three stairs. Or later two, and then even a single flight of stairs. Somewhere during this process of slow deterioration, I realized that this was not normal, and I called my house doctor to make an appointment. She examined me and took some blood for lab testing.
This was on Wednesday August 31st. The day before my planned travel to Glasgow, where I was scheduled to speak at DATA:Scotland, on Friday September 2nd.
The doctor told me she expected results back from the lab on Friday and offered to call me with the results. When I told her about my travel plans, we agreed that she would call if anything urgent came up, otherwise I would call her office on Monday.
Early return home
When my plane landed in Glasgow, Thursday afternoon, and I took my phone off of airplane mode, I was surprised to see two missed calls from the doctor’s office. After all, she was supposed to call Friday if really urgent, or I would call Monday. So why did she call Thursday afternoon already?
I called her back, but it was after opening hours and I got the answering machine, so I planned to call Friday first thing in the morning. But then, ten minutes later (just as I was queueing for passport control, quite awkward), the doctor called again.
She told me that my Hb (hemaglobin, the main ingredient of red blood cells, used to transport oxygen and energy through the body) was very low. I know (because it’s measured every time I donate blood) that my normal level is 9.8 mmol/L (15.8 g/dL). The value in my blood sample was just 3.6 mmol/L (5.8 g/dL). If I had been at home she would have ordered me to the hospital right away, for a blood transfusion. Under the circumstances, she suggested to take as much rest as possible, make sure the conference organizers were aware so that they could get me hospitalized in case I’d faint, and head to the hospital immediately after my return flight (which was scheduled for Saturday).
So I went to the hotel, mailed the DATA:Scotland team that I would skip speaker dinner, that I would not attend sessions the next day but only be there to deliver mine, and asked them to make sure that the team knew how to handle should something happen. And then I had a quiet dinner in the hotel, and an even quieter evening and night in the hotel.
The next day, after several phone and WhatsApp conversations between my wife, the doctor, and me, we came to the conclusion that, no matter how deeply I wanted to, it was not safe to try to deliver a session. Nor to delay my flight home any longer than needed. So I mailed the team again, now to fully cancel my engagement. And, credit where credit is due, despite all the last minute changes and cancellation, they were very accommodating, understanding and just generally great about the situation.
And then I booked tickets for the earliest flight home I could find. By now my stamina was so low that I not only accepted but even was happy when my wife arranged special assistance, so that I would be wheeled around through the airport and not have to walk myself. (By the way, if anyone ever wonders, as much as it sucks to have to rely on them, special assistance at both Glasgow Airport and Schiphol Airport are awesome people doing a fantastic job that is invaluable to those that need them – like me that day).
By the time my originally scheduled session at DATA:Scotland should have started, I was already sitting on the plane, waiting for departure.
When I arrived at Schiphol, my wife was already waiting for me – I later learned that with public transport strikes and a rare electricity outage, this was not as obvious as it would appear.
She drove me straight from the airport to the local hospital near our home, where I was examined again. By now my Hb was even further down, to 3.3 mmol/L (5.3 g/dL). After a long evening of waiting, talking with doctors, more examinations, more waiting for test results, and more doctors, I was admitted. I remained in the hospital, and my wife went home.
The next day I received my first blood transfusion. Two bags of donor blood, each a half liter, were given to me over the course of the day. I also got more information. Lots more. It was not just my Hb that was low. I also had a very low red blood cell count (which is expected with low Hb). And a very low white blood cell count. And far too little platelets. Basically, all the important ingredients of healthy blood were far too low in mine. The reason for this was, at that time, unknown.
The doctor told me that, because all these three cell types are produced in the bone marrow, she wanted to perform a bone marrow puncture to do further analysis into the root cause.
Based on how I was doing (good blood pressure and heart rate, no fever), she wanted to keep me hospitalized for one more night, then release me if my Hb rate on Sunday morning was above 4 mmol/L (6.45 g/dL) and I was still doing good on blood pressure, heart rate, and temperature. I ticked all the boxes, so eventually, Sunday evening (yes, processes in hospitals can sometimes be slow), I was dismissed from the hospital and back home.
At this point I realized that I could not realistically expect to make it to Data Saturday Oslo, so I mailed them to cancel my speaking slot. While they had slightly more time to adapt than DATA:Scotland, they too had to do some last minute changing and juggling, and I really appreciate that they, too, were completely understanding and supportive, so kudos to them as well.
Bone marrow puncture
I went back to the hospital on Thursday September 8th for the bone marrow puncture. This is for most hospitals just a routine surgery. Local anesthesia, cut a hole, extract some bone marrow (supposed to be painful because the anesthesia does not affect the bone – though I personally did experience it as pain, but rather as a very discomforting feeling), cut off a tiny fraction of the bone (again supposed to be painful, and again I experienced it different, as if someone was moving all my organs to the wrong place), sew up the patient, apply bandages, and then give the patient a half hour or so recovery before they can be dismissed.
But I have a history of fainting or nearly fainting after surgery, and this time was no exception. Every time I tried to sit up, I felt how I got cold and hot and dizzy after about a minute and had to lie down again. Eventually the doctor decided to put me in day care for that day. And, just to err on the side of caution, to give me yet another half-liter of blood.
So I once more spent almost a full day in the hospital. And at the end of the day, as I was released, I got an appointment to discuss the results with the doctor on Wednesday September 14th. Yes, tomorrow. As you can guess, things took a new turn.
On Friday September 9th, I got a phone call from the local hospital. First results of the analysis of my bone marrow were in, and the doctor wanted to discuss them with me, could I be there in half an hour?
My first thought was: That’s really bad news, if they call me in early, even before full results are in, and want me to come at such short notice.
My second thought was: But it’s also good news. If the news is that there’s nothing the doctors can do for me, then they could have told that next Wednesday. No need to change the schedule at such short notice for that. So whatever it is, there’s still treatment possible.
And my third thought was: Whatever that treatment is, they’re in a hurry to get it started.
With all those thoughts already going through my head, I was not very surprised to hear that the preliminary diagnosis, at that time, was “some form of leukemia”.
Since leukemia is a specialty that is not treated at our local hospital, the doctor then told me that my further treatment would be done at the academic hospital in Utrecht. (Not sure how this works in other countries, but here in the Netherlands, the “academic” hospitals are those that cooperate closely with a university that has a medical faculty; and academic hospitals are generally considered the best in our country).
I was sent home with a referral to that hospital, where my first appointment was scheduled for Monday September 12th.
Diagnosis and treatment
So yesterday morning is when my wife and I heard the official diagnosis of the exact type of leukemia I have. It’s called AML: acute myeloid leukemia. For people interested in the exact details of this specific type of leukemia, I suggest starting here. I’ll give a short laymen’s summary here.
The stem cells in my bone marrow, that are used to make new white blood cells, are out of control (cancer). They divide way too fast, and before they are even ready. So I produce lots of unready white blood cells, that are useless. That over-production completely smothers the production of healthy white blood cells, but also of red blood cells and platelets (since these three cell types are all produced in the same spot, my bone marrow).
The treatment differs per patient. The doctors are still awaiting more lab results to determine the exact version and variety of AML that I have, so they can fine-tune the treatment. But I do already know that I will start (probably later this week, or else early next week) with a period of heavy chemotherapy. I will be hospitalized for probably four weeks; the first week I will receive an intravenous drip with all the poisons needed to kill the cancer cells in my blood and in my bone marrow, the three weeks after are to recover from all the side damage because those poisons tend to be not very picky about what cells they kill. Once that first period is over I’ll be given a short recovery time (could be as short as a single week) and then I’ll be hospitalized again, for another round of basically the same treatment, to squash all cancer cells that survived the first time and try to make a comeback.
The next step after that, for me, are the golden words of database experts: “it depends”. In the best case scenario, those two bouts of chemo will be enough. But it’s also very much possible that I will need to receive a stem cell transplant. If that’s the case, then the doctors will use the international database of registered bone marrow donors to find someone who is a close enough match that their bone marrow can help me, and use the donated bone marrow to help my body build healthy cells. This, too, will require a longer period of hospitalization.
And after that follows recovery, which will be slow. And frequent follow up tests to see if the leukemia has the good grace to stay away, or comes back to haunt me once more.
So all in all, I’m at the start of a period of at least a few months, perhaps longer, that hopefully ends with a completely clean verdict … and then a period of two to four years of anxiously awaiting each follow up test to check whether it didn’t come back.
What can you do to help?
Now that I knew how my next months are going to look like, I realized I had to cancel several other events as well – dataMinds Connect, Techorama, SQL Ireland Meetup, and the PASS data community summit. All of them events I was looking forward to, but that I now have canceled. I have also withdrawn all my open session submissions. And once that was done, I wrote a short message on Twitter, referring to my upcoming chemotherapy.
The response was overwhelming, I have received many, many, many messages of support. And while I can’t respond to each individually, I do want everyone to know that I read them all, and that they really help. Mental state is a factor in beating cancer, and my mental state has really gone up thanks to all those messages.
Some people also ask if there is anything they can do for me. I really appreciate that. But at this time, there is nothing (beyond those nice messages) you can do for me. That’s now in the hands of the doctors. And based on the contacts so far, I am confident that I am in the right hands.
But there are things you can do for cancer patients in general, and more specific for leukemia patients specifically.
- Donate to your local cancer charity. There are cancer charities / foundations / whatevers all over the world. The money you give them is spent to fund scientific research into better treatment; to provide much needed care and attention to patients, survivors, and relatives; to provide good information; and to increase awareness.
- Register as a stem cell donor (bone marrow donor). A donor needs to be a match on many parameters. Every time someone needs stem cells, a world wide database is consulted to find a matching donor. The more people are registered, the better. I myself have been registered as a bone marrow donor for over three decades now, yet never have been called to donate. Not because very few donors are needed, but because the odds of a match are low. And that’s exactly why many registrations are needed. Most people who register won’t ever be called either – but those who do have the unique opportunity to literally save a life, at the cost of a small inconvenience.
Neither of these are likely to help me personally. But they might help you in the future. Or one of my children, or one of yours, or …
Donate to cancer charities. Register as a stem cell donor. Those are the things you can do if you want to make a difference.