Leukemia Testimony

Chapter 1: The start

This story starts on Saturday 17 June 2017. I had been working in the garden that day. It was hot, and had been so for a few weeks. I took a shower afterwards, and noticed red dots, spots and splotches around my wrists, ankles, in between my elbows, and other such places. I didn’t think much of it, but Tessera, my wife, was worried. Because they were a specific kind of red dots called petechiae. She thought it might be some kind of autoimmune sickness with lowered blood clotting symptoms. To ease her worry I promised to make an appointment with our doctor. The reason I took her concern serious is that she works in the medical field. She has seen many strange things, and has developed a gut feeling for problems such as this. At this point we were thinking a small Prednisone course, about a week, some recovery days, and I’d be back in business.

Monday 19 June, I made the appointment. The G.P. wasn’t too concerned. He thought it was sun related. But since it was my wife who was concerned he did give me a referral for a blood clotting test. The idea was if the spots got worse I would make an appointment for the blood test. I should mention that at this stage the spots were all over my back, chest, arms and legs. During the latter part of the day I started getting random ‘bruises’ all over. And quite big. One on my arm looked like I’d been hit with a baseball bat. Except that I had not. Tessera insisted I do the blood clotting test.

Tuesday 20 June I went to work. It was yet again a hot day but I wore long sleeves. I didn’t want anyone to see the spots and bruises. I called for an appointment and got one for the next Tuesday (27^th). I thought it would be ok. Tessera wanted it to be earlier. So Wednesday I worked from home, and called the doctor’s office to ask if they could get the appointment moved to an earlier day. To which they happily obliged, and called me later telling me I could go the next day. During the Wednesday I started feeling really terrible. Lowered concentration, fatigued, and I also started going pale. But I didn’t give it much thought.

 

Chapter 2: The diagnosis

Thursday 22 June. A day I’ll never forget. I started the day as I would any other, a cup of coffee, and check the news and sports. Except I felt really bad. I was pale, and the rings around my eyes were very dark. I was dizzy, and my concentration was low. I decided that I was probably better off working from home again. I couldn’t think straight and wasn’t getting anything done anyway. I left home for the hospital, by car, where the blood tests are done. I had a little interview, and gave 4 vials of blood. Which was hard and painful, since my blood was thicker than usual. I then went past Tessera’s department, and got a lot of worried looks from her colleagues. And then drove back home. That I did all of this was a miracle. I’ll explain why later.

Once at home I called work to get sick leave. I really couldn’t get my concentration going. I was home for an hour when I got a call from my G.P.. He told me I had to get back to the hospital for further tests, leukaemia related. And made it very clear I was not to drive myself. I called Tessera to tell her, and she promptly cycled home within 15 minutes, the fastest she has ever cycled. During that time I packed a bag, as I already realized I was probably not getting back home that night. And when Tessera arrived we headed to the hospital. Once there we I got the full physical. I thought I was to be checked for leukaemia, but the doctors had already decided it was leukaemia. All they needed to know was what kind, and was I healthy enough to survive treatment. Another 10 vials of blood were taken, I was x-rayed, had my sinuses, lungs, heart and anything else checked. Good news was that apart from being overweight my health and fitness was good.

While we were doing tests and waiting for a room Inge, Tessera’s mom, came. She cried and prayed with us. Tessera and I had hoped I could spend the night at home, but since I was in a critical condition I had to stay at the hospital. And we also let our family, friends and church know. Tessera went home at the end of the day, and I sat dumbfounded by all that had happened.

Now for the numbers, my HB was 7.1 which is below the minimum of 8.5. My white blood cell count was 13.2, which was above the maximum 10. These were mostly cancerous cells, at 99%. And my blood platelets were 5, which was below the minimum of 150. The miracle I mentioned earlier was that with my platelets being so low I should have statistically bled to death internally during the morning, and not been driving around for blood tests. I did receive platelets so that my platelet count could get back over 40, otherwise I would not be able to do the bone marrow biopsy.

Tessera and I got an explanation of what was going on my body. Basically the bone marrow is the factory where blood is made. To keep the analogy simple, let’s say there are 3 factories. Factory 1 produces red blood cells, factory 2 produces white blood cells, and factory 3 produces platelets (its more complicated than this). Basically factories 1 and 3 started producing white blood cells, but because they aren’t properly equipped for this process, they don’t let white blood cells mature properly, leading to leukaemia.

Friday morning, I woke up at 5 a.m., as I always would. Got ready for the day and called Tessera and my mom. Once Tessera had arrived, we started the roller-coaster again. I was rolled into a little room for the bone marrow biopsy. A discussion started between the lab assistants and the doctors about my blood tests for the day. And it was decided that I would give blood before the biopsy. Since my blood was messed up, and my arms horrible bruised from the lack of blood platelets, giving blood was difficult and very painful, but 10 more vials had to be taken for analysis. And as the lab assistants left, my arm still hurting, I was turned onto my side, Tessera next to me, and got local anaesthetic, and was injected with a rather large needle, which pierced the bone, which was not anaesthetised. That hurt but was doable. They then took fluid out of the bone, also doable. They also needed some of the bone, which they just break off with the needle in the bone. This is the single most painful experience I’ve ever felt. Even Tessera commented on the pain she could see in my eyes. She saw my pupils dilating and contracting rapidly because I was in so much pain, this was very weird and startling to see.  It took 20 minutes before I could start moving again. But I still had more scans that needed to be done.

We also had a talk with our fertility doctor. Tessera and I had been trying to have children for 10 years, without success, and for no medical or scientific reason. But since I was going to get chemotherapy any chance of children would be gone. The chemotherapy would sterilise me. So we made a plan to collect sperm. There was enough to divide it into 4 sets so that we could use that later when I was healed. At least the hope of children could be kept.

Tessera and I were both very tired at this point. So she went home. I had some time to myself to think, and after 4 Dalynn, my sister, came to visit. At this point I was feeling a little down, but she really cheered me up. She also was with me when my doctor come to tell us what the initial diagnosis from the biopsy was. Acute lymphoblastic leukaemia (ALL). Later we’d hear that it was Philadelphia chromosome-positive ALL. Basically I’d be getting heavy doses of prednisone and chemotherapy at the same time, this would last about a month, After that I’d have to do anywhere between 2 – 6 chemotherapy sessions. Then I’d get one last prednisone and chemotherapy treatment, and I’d need stem cell transplant from somewhere. Good news was that the doctor felt I could survive the treatment (which was not a guarantee). And I could spend Friday night at home, because prednisone would only start on Saturday.

 

Chapter 3: The miracle of preparation

Its at this point that I need to mention a very important miracle. The next 2 months were about to be the most difficult of times. And the prognosis of the illness and treatment were also looking very difficult. It’s easy for me to see why people start asking God about His motives. “Why is this happening? Why me? What did I do to deserve this?”

I didn’t really have these questions. Why? Before I got sick God had been preparing me for the hard road ahead. I’ve always enjoyed researching things, it’s the scientist in me. So I do spend a lot of time looking into things, Evolution, New Age, end times, anything that’s not clear. I do this out of curiosity, but also because I like to be informed and have an opinion. I never liked ‘I don’t know’ as an answer. I do however understand that there are some things God won’t reveal, as he states in Deuteronomy 29:29. The secret things belong to the Lord our God, but those things which are revealed belong to us and to our children forever, that we may do all the words of this law. But what He does reveal we should listen to.

I’ve always enjoyed good debates on any subject, and one of my favourite debaters is Dr William Lane Craig. I’ve learnt a lot from his debates, seminars and Q&A sessions. About a year before I got sick I started paying extra attention to his teachings on the reason for evil. I’m still not sure why, other than God laid it on my heart to look at. Originally my easy answer for evil was we sinned and broke the earth, so its our fault. But that never really answered the question as to why God allowed pain and suffering in certain circumstances. Dr Craig explained quite well. But as a mathematician, here is my analogy. God is busy with a very complex equation to get the most good in the world. Keep in mind that if there is no sin, then there is no forgiveness, no sickness means no healing, and so on, which means at the end there is exactly zero good in the world if there is no evil. So God gave Adam and Eve a free will, which meant they could choose to sin. Reason, it allows for the existence of good. How can you recognize good without an opposite to contrast it. But God also knows what evil to allow. He knows that allowing certain things results in a certain amount of good, the ultimate being souls saved who choose to serve Him. He also knows which evils to stop because they will cause a negative growth in good.

What does this mean practically. When I heard my diagnosis, I knew that God could have prevented it, but because He knew what the result would be, He allowed it. I didn’t know, but I trusted in His judgement. As to what good has come out of this, I’ll get to that later. And when I heard I was sick, I knew I would survive this. It was as if God told me I would have a rough time ahead, but I’d make it out alive.

I also need to deal with 3 teachings in churches today, which I consider dangerous for people going through hard times, and it doesn’t matter if it is sickness, or any other problem. And what makes these teachings dangerous is that there is bit of truth in them, but we can’t take them to their extremes, which is what some do.

The first is the teaching that everything is God’s will. I really don’t believe this, simply because God never intended us to be bound by sin and disease. In fact we can see in the Bible that God’s desire is that all be saved. If we believe all is God’s will, then it means the all loving God wanted people to sin, die, suffer, and for me to get cancer. Sounds weird doesn’t it. God allowing things to happen doesn’t mean its His will, but it does mean he has a plan. Romans 8:28 And we know that all things work together for good to those who love God, to those who are the called according to His purpose. Remember not all things are good, but they work together for good.

Second teaching is that when bad things happen, it’s obviously God punishing us for something we did. But we forget about Ecclesiastes 3, which teaches us that time and chance happen to all of us. Sometimes bad things just happen to good people. And again, Romans 8:28. Job is a good example, where God actually got angry at his friends for taking this teaching to an extreme and believing Job must have done something to upset God. While we can read that this was a challenge from Satan on his life, and not a punishment from God.

Third teaching is that bad things can never happen to the saved. If you’re a Christian, you will be persecuted, by people, but also by Satan. The Bible is full of examples. If the amount of bad things is a test of how saved your are, then I can only conclude that the disciples/apostles were bad people, still needing salvation. I would actually recommend Christians who are comfortable to look at their lives, because it may be the case that the devil has nothing to worry about such lives.

 

Chapter 4: 1^st month in hospital

The plan for the first month in hospital was as follows:
Week 1 – Prednisone
Week 2 – Prednisone, chemo on Monday, Back injection on Tuesday
Week 3 – Prednisone, chemo on Monday, Back injection on Tuesday
Week 4 – Prednisone, chemo on Monday, Back injection on Tuesday
Week 5 – Prednisone, but in decreasing quantities

During the first week I was able to collect another 3 doses of sperm, since I had not yet begun the chemotherapy. In total I have enough stored for 13 attempts at IVF/ICSI. That’s a positive as there was a high chance of infertility after the chemo. However, you will read more about that later.

Prednisone is a really strange substance. I got a lot a pretty high dosage, a total of 160ml per day. The stuff really pumps you up. I started talking very fast, and thinking even faster. And I couldn’t sleep any more. I spent the most of the month awake. It also increases your appetite. I spent my nights watching cooking shows, and looking at pictures of food and recipes on Pinterest. And started to arrange for Tessera and my parents to bring me all sorts of nice meals. And I developed a form of diabetes during this time. Side effect of Prednisone.

The back injections were terrible. Very often they had to take 3 or 4 attempts for the needle to be in the right place, it was always very painful. I actually ended up needing Oxazepam to relax so that they could get the needle through the muscles in my back into the lymphatic system. And then I’d get to sleep for a few hours. Tuesday and Wednesday were hard because of the injections.

The chemo’s were going well. I was sick only once. And found dairy products sour, which led me eat a lot of yogurt, which is already sour. I also ate a lot of eggs and bread with Marmite. Its known that chemo changes your taste. While I didn’t see too many outward side effects from the chemo’s, on the inside the effects were escalating. Since I couldn’t notice those, I felt ok most of the time. But the lab actually saw my blood fall apart before all the tests could be done. No one knew what was happening. It wasn’t until Dr Coenen started to look at my blood that he discovered that the chemo had caused the fat levels to rise to unbelievable heights, which led the blood and fats to separate in test tubes (I had a few in my room to show others they were half fat, yellow, and half red). This would have been ok, except for the complications that followed later.

 

Chapter 5: 2^nd month in hospital

My second month in hospital started out ok. We all celebrated my mom’s birthday on 25 July. It was a great evening. But I didn’t feel great the next day. I was eating supper with Tessera when all of a sudden I got a horrible stomach ache. I woke up the 27^th and threw up badly. I pulled two muscles at this point, one in the shoulder, and one in the ribs. This hampered my breathing and sleeping. And then there was the stomach ache. I got paracetamol, and 2 forms of Morphine. Oxynorm for short term relief, and Oxycodone for long term. All this really did was take the sharp edges of the pain. And every time I threw up the pain was back in full force. I’ll admit that from this point my second month became a blur. I have memories of people visiting, or doctors checking up on me. But no content. Tessera took notes so that I could catch up later.

The reason for the pain is a complication that occurred because of the fat in the blood. Pancreatitis, basically a clinical infection of the pancreas. At this point I was also taken of foods. My stomach and pancreas could no longer handle them. I was also put on an intravenous drip for liquids.

During this time my blood levels were still a problem. I received a few blood transfusions. I really want to thank all those who donate blood. These are heroes who save lives.

By midway August I started to recover. I was allowed to start eating. Mostly yogurt. I found it hard to start eating again. Because I was struggling to eat enough, I was also given Nasogastric tube. Basically I had a pipe going through my nose into my stomach so that I could get extra nutrients while I started to relearn how to eat.

And the diabetes got worse. I would wake up at 3 in the morning with bad lows (under 3) and after breakfast I would be above 20. I was on a lot of insulin. And was told that I would now be a permanent diabetes patient. Partly because a part of my pancreas had died off.

And we had a rather unpleasant bit of news. After 2 months of research it was found that I had no stem cell donor. My brother wasn’t tested because he has had Guillain Barre syndrome. This is a very rare immune sickness. He is healed, but because there is still a lot of unknowns about the disease they wouldn’t consider him as a donor. My sister was not a DNA match, and my parent are only half donors, and those aren’t used in the Netherlands. And the World Donor Bank yielded no results. This meant I was now going to enter a different treatment. I was given Dasatinib.

Friday the 25^th August was a good day though. I got to go home, after staying in the hospital for 2 months and 3 days.

Chapter 6: Aftermath

I must admit that once I was at home I still had struggles. But I was home. There is a lot that happened but I’ll try to sum up how things progressed.

I’ve had to rebuild all my muscle. I lost 13kg in the hospital, all muscle. I’m still doing physiotherapy, and to give an idea of where I am, I used leg press 120 kg. I started out at 50, and am now pressing 90. I’m still recovering, but it’s looking good. I’m still in the process of rebuilding all the lost muscle.

Dasatinib is a nasty pill. I have days where I’m nauseous, and struggle to eat, and then I have days where all I want is to eat. I have found that the best way to go is for me to eat 4 or 5 small meals, mostly meats and vegetable, little carbohydrates. The proteins are to build muscle, fats for energy, and by keeping carbs and sugars low I have been able to lose body fat. I don’t have numbers because I’m still building muscle. But I can see my belly getting smaller, and my clothes fit better.

Another problem with the Dasatinib is that I was consistently tired. But I moved the pill moment from morning to evening, and can now sleep through the drowsy period. I sleep anywhere between 8 and 13 hours. Also my immune system is weakened. I had problems with slight fevers, eye infections, ear infections, and such, but I started taking vitamins, and that has made it better.

And I’ve had the strangest skin rash, twice. The first time is unclear why, but during the second we had a skin biopsy done. And the saw it was a viral infection, related to a flu I had at that moment. When your immune system is weak things like the flu will manifest in the skin.

But on the positive note, when I left the hospital I still had 1.6% cancer cells in the bone marrow, the blood was clean. But after one month Dasatinib I was totally clean, no cancer cells anywhere. I consider myself healed, but still take the pills since I’m technically under treatment. And I no longer need a stem cell transplant.

And the diabetes is gone. And the dead part of the pancreas is fine, and functioning well. Doctors were surprised by that one. I do still have about a litre of fluid in my abdomen that gathered during the pancreatitis, and that’s taking a long time to go away.

One really nice thing is when I got home my cat was unsure about me, but after a week she started to lie on the couch with me. We would sleep there together in the afternoons. She has never been very social, but it seemed like she knew I needed the company.

And my relationship with my family has gotten better. I’ve been more open with them, and more spontaneous.

And since January I’ve been working again. I started with 2 hours a day, and have till now made it to 6 hours a day. I’m aiming for 9 hours a day, 4 days a week.

And I’ve been had my sperm count checked a few times, and it’s increasing. The prognosis is that I’ll be back to full strength in about a year.

Chapter 7: Thanks

After all I’ve gone through I can see God’s hand working in my life. He has really helped get through this. He used family and friends really well. I felt all the prayers and can really see God’s love. He prepared me before this, helped me through it (using the medical knowledge in the world), supported me afterwards. To Him goes all the glory and praise.

Also Tessera has been really great. She visited me every day, would eat with me when she could. Washed clothes and brought back for me to wear, brought me snacks, read to me when I could no longer, and most of all was patient with me while I struggled to regain my health.

And my family, my parents who while they struggled tried to visit me at least once a week, and brought me potato salad (a craving I had in the hospital), and  even watched tennis with me while not being with me. We’d discuss the matches over WhatsApp. Amazing what you can do with technology. Dalynn my sister, who was able to laugh with me even when I wanted to cry inside. And William, while we had our problems, we were able to patch things up, and enjoy things like watching a formula 1 race together, in the hospital. And my in-laws, who while dealing with Dennis’ bypass operation, my father-in-law, also still made time for Tessera and I.

And all the friends who visited and prayed.