(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.)
Earlier this week I shared with the community the sad news that I have been diagnosed with leukemia. This post is a follow-up on that one.
First of all, thanks to all who responded to my blog and tweets about my health issue. I have received lots of responses: here, on twitter, by mail, and through several platforms. I cannot respond to all individual comments, but I have read them all and they really helped me. It is good to know that people think of me. All your responses have strengthened my resolve and given me extra energy to fight this disease.
A special extra callout to William Durkin and Steve Jones. They did a great job of amplifying my call to action for people to get registered as a stem cell donor. Thanks to their help in spreading the message, I already know that several new registrations have been added to the register – and that knowledge makes me happier than you can imagine. Just to reiterate, registering is really easy, all it takes is a swab of your cheeks. You only are asked to do more if your name ever comes up as a match, and that means that you have the unique opportunity to help save someone’s life! More information can be found here or here.
When I wrote my previous post, I thought of it as a one off. A way to inform the community about the reason for my absence. But some of the people who responded, asked me to keep the community updated. And I thought: why not. It might help myself if I keep a kind of diary of how my treatment is going. It is also an easy way to keep those informed who want to be informed. And, who knows, it might even contribute a tiny bit in awareness, as a way to help people all across the world understand leukemia better. Although I do want to add that every person is different, every case on leukemia is different, and hence this story will most of all be my story.
Back in time
This specific blog is about a toothache. One that is badly timed, because it partly overlaps with the period from first hospitalization until diagnosis, as described previously. A toothache, no matter how painful, pales in comparison to a cancer diagnosis. So I didn’t mention this before, when I wrote about the diagnosis. But because my toothache now interferes with my treatment, I’ll need to go back in time to a period I have already covered, to fill in more details.
So let’s rewind to Friday, September 2nd, the day I returned early from Glasgow and was admitted to the local hospital. My toothache started somewhere in the night. I could not sleep, due to a terrible headache near my right temple. And I realized the ache did not start in my head, it started in my upper jaw and radiated to my head.
The night shift did all they could do. But, frankly, they couldn’t do much. They knew that my counts of red blood cells, white blood cells, and platelets were all ridiculously low, but there was no diagnosis yet. They gave me the highest allowed dosage of paracetamol (acetaminophen), but they did not dare to give me any other medication without prior consultation of a hematologist (physician specialized in blood diseases). And a toothache is insufficient reason to get the hematologist on duty out of their bed.
That night was one of the rougher nights in my life. It’s not the worst pain I have ever had, that honor is still held (with ease) by kidney stones, but it was still bad. Really bad.
On Saturday, during the morning and in between many other tests and talks that were needed for my main problem, I finally got to speak to the hematologist about my toothache. And this resulted in a prescription for oxycodone, a highly addictive opioid painkiller. That helped. It really did. But even with the combined effort of paracetamol and oxycodone, I still was in pain a lot of the time, because every time the effect started to wear off at least an hour or two before I was allowed the next dose.
Dentist on duty
I was released from the local hospital on Sunday, September 4th, early evening. Still undiagnosed, but with enough donor blood in me that it was safe to go home. And still with a toothache that was only barely suppressed by my painkillers, and that seemed to get worse by the hour. The hematologist agreed that I should go to the dentist on duty as soon as possible. But because of my low white blood cell count, she really didn’t want any risk of infection, so she gave me some antibiotics to take before even heading to the dentist, just in case they would need to do dental work that might cause wounds, to minimize the risk of infection.
So my wife called the dentist on duty, and then drove me there. The dentist examined my teeth and confirmed that there was an issue. An inflammation, but in a tooth that had already been given a root canal treatment, many years ago. They told me this was not something the weekend duty can treat. Normally in a case such as this, they would suggest me to go to my regular dentist during their normal opening hours, for either a do-over of the root canal, or for jaw surgery to access and clean the inflammation through the gums (if I understood it correctly – I will admit that due to a combination of sleep deprivation and the ‘good drugs’, I may have been somewhat groggy at the time). But because of my low blood values (that I had of course informed them of), they suggested in this case to just try antibiotics at first, to keep the inflammation at bay, until after the hospital had diagnosed and treated my blood issues. After all, low white blood cells means highly increased risk of causing infections with all dental work done, and low platelets means a very high chance of losing too much blood as a result of drilling or other dental work.
The antibiotics they prescribed turned out to be the same as the one I already had from the hospital. So in the end they just sent me home with the advice to keep taking those antibiotics, and to make an appointment with my own dentist once my blood would be back to normal. At that time, I expected that to be a matter of weeks, if not days.
Better, but not good enough
In the days that followed, I noticed how my toothache got less. My wife also noticed that the swelling of my jaw got less, and then disappeared. I stopped taking the oxycodone, though I did still need the paracetamol.
And that last bit bothered me. Normally, the aim of antibiotics is to remove an inflammation. In my case, that did not work. Yes, it was much better. But it was not gone. Especially when it was almost time for my next paracetamol, I felt that the inflammation was still there. If inflammations could talk then mine would have said: “we’ve had a setback, but we have not lost yet … we’ll be back!”.
Even after I had completely finished the antibiotics treatment, the inflammation was still there. Lingering. Biding its time. I knew that, with my severely reduced white blood cell count, I had to do everything to avoid inflammations. I did not want this one to get worse again, now that the pills had reduced it so much. So I called the doctor, for a prolongation of the antibiotics. And I got one, along with an explanation. Normally, antibiotics get the inflammation down far enough that the natural immune system can swoop in and finish the job. But my immune system was not able to do much more than take a look, nod in appreciation, and move on … no killing blows, so the inflammation never really went away.
Last Monday, September 12th, was when I had my first visit to my new hospital, met my new hematologist, and received official confirmation of the leukemia diagnosis, details about the exact type, and information about the expected treatment. And we also discussed my toothache. Chemotherapy is of course designed to kill off all cancer cells. But those chemicals are not really very picky, they kill off lots of healthy cells too, including the same white blood cells (and red blood cells and platelets) that I already have a shortage of. That means that chemotherapy makes the recipient extremely vulnerable to infections and inflammations, and the hematologist, if at all possible, wants to minimize or fix each and every condition before starting the treatment.
In short, she referred me to the hospital’s oral surgeon, with the request to do whatever is needed to get that inflammation gone as soon as possible, but without causing new issues due to my bad blood values.
Fast forward to last Thursday, September 15th, when I had my appointment with the oral surgeon. My expectation was that it would be a quick, clean kill. Look at my teeth, confirm the issue, apply local anesthetic, rip out the bad tooth, and send me home with some painkillers to deal with the pain after the anesthetic wears off.
Boy, was I wrong. In two ways.
The first way was actually a pleasant surprise. The surgeon took his time, and I really mean lots of time, to carefully explain all the available options. He talked me through the various ways my bad tooth could be fixed. Basically the same options that the weekend duty dentist had mentioned a week ago, but explained with more time and more patience.
He also wrapped those options back to my current situation. Redoing the root canal has a very good chance of success but it takes a few months to be certain. Cleaning the inflammation through my gums is faster, but less certainty of success. Both strategies are very valid for an otherwise healthy patient. But I am not healthy, far from that. I have a disease that, when not treated, will kill me. And my treatment can’t wait. So neither the slow approach nor the uncertain approach were possible for me. And that left only the third option. The one that I, frankly, had already expected. Extraction.
But that option also was complicated in my case. The tooth to be extracted was a very big one, so he expected that there would be quite some bleeding. There’s no way to avoid that if you remove a tooth. So normally, you apply bandages and pressure until the platelets clump to make the blood clot. But my platelet count was low. Too low.
In the Netherlands, platelets are measures in thousands per cubic millimeter of blood (which equates to billions per liter of blood). Healthy men have a count between 150 and 400. The oral surgeon said that he wanted at least 70, preferably more, in order to make the extraction of my bad tooth safe. But the blood sample taken that morning showed a count of only 53, and that was simply too low.
And that resulted in a rather interesting catch-22. In order to start treatment for my leukemia, my tooth had to be extracted first. That extraction was only safe with a platelet count of 70 or better. And my count was below 70 because of the very leukemia that made necessitated the extraction.
I would not have known a way out of this. But that’s probably because I know more about databases then about medicine. The oral surgeon discussed the issue with my hematologist, using all kinds of words and terminology that went straight over me head, and then they knew just what to do.
The plan was to hook me up to an intravenous drip, again. This time not for receiving regular donor blood, but for receiving pure platelets. That would, hopefully, pump up my platelet count to above 70, and at that point the extraction would be safe.
The departments aligned their schedules. My new appointment at the oral surgeon was set for Friday, September 16th. Quite early in the morning. Giving platelets would have to start really early in order to be ready in time, so the hospital decided to keep me there.
The rest was simple
The rest of the story is really rather uneventful.
I got admitted to the hospital, to the department where I’ll be spending lots more time over the coming months, but now for a short stay only. After all the formalities were done and the doctors had told us all their plans, my wife went home and I stayed behind. I wrote the first part of this blog, went for a short walk in the hospital’s environment, did some work on the next block of execution plan video training, and tried to relax playing some games before going to sleep.
On Friday morning I was hooked up to an intravenous drip to receive platelets. Once a full bag had been pumped in my body, my count was up to 64. Better, but still not enough, so they got me a second bag, and then the nurses wheeled me to the department for oral surgery.
I never would have predicted it, but this was the first time in my life that I actually had fun while undergoing dental work. The surgeon had a sense of humor that aligned very well with my own, and he understood that I am the type of patient who loves humor and hates taking everything so damn serious. At times he had to pause his work in my mouth because I was chuckling too hard. But that was all his own fault, he kept making jokes. (Okay, I did retort in kind whenever my mouth was empty enough that I was able to).
I was returned to the hematology department where the doctors and nurses kept me under observation for a few hours. Once the local anesthesia in my jaw wore off, the after pain hit me, and it hit me quite hard. After a full week of not needing oxycodone, I now needed a few pills again.
But at the time I write the finishing words of this blog, Saturday, September 17th, I can once more manage the pain with only paracetamol. And I know even that remaining pain will get less and less over the next days.
I am home now. The last weekend at home for quite some time. Next Monday, September 19th, I am expected back at the hospital, and then I will be admitted for most likely a period of four weeks.
On that day, the results of my bone marrow research will be in. Or at least sufficient results to determine the exact kind of treatment. I will hear the details on that Monday. And once those details have been discussed with me, I’ll probably be hooked up to yet another drip, but now with nasty chemicals that will make me feel very sick.
How sick? No idea. Yet. Once I do know, I will try to share my experiences going through chemo here.