For a while, I even started thinking about a bone marrow donor and transplantation. I talked it through with my doctor, but he said: Lindsey, I think you underestimate the impact of such a transplantation. I felt myself transforming in a frozen Penguin at that point. I what? Underestimate it? I couldn’t say a word at all. But that quote, was further away from the truth, then the distance between the Earth and the sun.
Let me be honest, I really don’t think that I underestimate it. On the contrary. Choosing for a bone marrow transplantation would be out of despair. It wouldn’t be an easy choice. I wouldn’t chose it for the easy way out. I know the stories about transplantations. I know people can die from it. Or afterwards. Or having such a bad repulsion, whereby the life quality gets very low, and all other kind of reactions on it.
But I also know the stories about those who survive. Those who do get cured. Those who are finally hear the words: The cancer is gone! Those who finally feel: I’m feeling good again. Not that it is a black or white situation. And I know, everyone, even with the same type of cancer, or the same treatment, is reacting his own way. You can’t compare any situation! But still, hearing: You’re cured. No more treatment. That would mean everything to me!
At this point, I don’t remember how it is, feeling healthy. Not having pain. Not being tired. And I refuse that this is it, till the end of times. I know there is a solution somewhere out their. For me. For everyone. And I will keep searching for it. I will keep looking for it! And I will keep doing the best I can in the meanwhile, hoping that day will come soon!
So no, choosing a transplantation would be a rational, but radical and difficult choose. Knowing that there would come an end on how I’m feeling now. Like 50 percent of my capacity before I got sick in my good days, like 25 percent in my bad days. Knowing that a transplantation could mean less then 25 percent, or even zero. Being dead. And I don’t want that, non of us do! Everyone wants to live! But I would do it, hoping and going for the full 100 percent. To be alive again! Living! Not surviving! When I thought about my beloved ones, I definitely wouldn’t choose for a transplantation. Rather being with them at 25 or 50 percent, as long as it takes, then not begin with them. But thinking about myself, and myself only. It would have been difficult.
It’s not that I’d make my choice. But I decided to test my sister if she was compatible with me. Unfortunately, she wasn’t. And with that, the thought of a transplantation, faded away. Not gone, but more on the background. I know there is a database with possible donors. But that’s for when it’s really necessary. I wouldn’t bear the thought I have a double match with someone who’s needing it more then I do, but was too late, because I was ‘first’. And I’m also scared that the chances on a rejection of the donor, is much bigger when it isn’t family.
So we went to the only real option after feeling that my body was so full of the medication, and that was switching to an other type. My first two types, worked a bit the same way. Only the second was much stronger then the first. The one I was starting to take now, gets used with bowel cancer and other types too, sometimes. The chances the medication would burden my heart or/and lungs were bigger, so running would be on a low level until further notice.
How I felt, weighed so heavily, that feeling better, was the only important thing for me. Even more important then running on the international level again. Although the tears competed in the socket of my eyes to flood my face, I didn’t shed a tear. My survival mode was again at the highest level, looking foreword and hoping for the best. I always feel like it’s my only option, trying to be strong and moving forward, although also bad days are part of the game.
I started the new medication. I have to say, it wasn’t a big success either. I didn’t even reached the standard dose, and I already felt like I was sitting on a carousel the whole time. Driving wasn’t possible and I was doing a hibernation, except it was in the middle of the summer.
The doctor decided to reduce the dose, and we ended up at the lowest amount possible. I wish I could say that made me feel better, but that wasn’t.
The 3 days between the second en third type of medication, ‘’the non-treatment period’’ – were a relieve. I felt better! And that after more then 3 years! It gave me a lot of hope: It’s possible, feeling better again! And recognizing it! I still had headache, but it wasn’t longer a bag of 25 kilos potatoes on my head, hanging around my body, no. It rather was a bag of 10 kilos. And believe me, those 15 kilos made a difference! 3 days are a short period, but I’m thankful I had them. At the same time, it’s sometimes even harder knowing for sure, without medication, I would feel better. It’s like I’m making myself sick, by every pill I take. But knowing it’s necessary for my cancer – Which was reducing again by the third medication- So it gave me the hope to reach the complete remission this time!
The dizziness, tiredness, nerve- and muscle pain stayed. And I also got a mouth like a big mushroom with white and red polka dots. You would expected every moment a gnome, looking for a way out of my mouth. Nice for in the cartoons, less nice when having it in your mouth. The mucosa in my mouth, which before I didn’t even knew I had, ware lighting up like a disco ball. In periods, they still do.
With every medication, other side effects comes, but almost never goes. It’s incredible how many types of headache you can have! Even more incredible how non of the painkillers do something about it. I admit, I hate trying them out. I only tried a few. Sometimes, because I don’t want to load my body with more medication. Sometimes because I’m afraid they won’t help, while now I’m often thinking: it’s okay Lindsey, when it is too much, you can take painkillers. And sometimes because I think they will help. And I won’t be able the function without it anymore, I would become addicted. Maybe the last reason, is the most dominant one, not trying the painkillers a lot. Or maybe because I have the feeling I can do something about my cancer by gnawing through the pain, gnawing through the side effects. The only time when I have the feeling I’m ‘fighting’ it. Because taking pills and feeling sick, is even more passive for me, then a sleeping sloth.
With every option I’ve tried, with every disappointment realizing it didn’t worked out, I also realize the solution is getting closer. So I keep collecting my courage, and when I’m out of energy, my beloved ones are doing it for me. They really are my heroes and I’m so grateful I have them in my life!
So I’m pushing through, and with the energy I have, I’m still running. I keep my condition on a reasonable level, so hopefully one day, I can do intensives trainings again, I can compete again at the highest level, I can decide when my professional level of sports is over, not my cancer. Although it’s a tough opponent, I refuse that cancer controls my life. It’s a part of it, sometimes a big part, but there is more than that! I’m more than that! So I will keep going, trying to reach my goals, trying to realize my dreams!
I know one day, I will find my solution. I will feel better again. I will be able to say: It was all worth it! And in the meanwhile, me and my beloved ones, will do the best we can, to make the best of it!
I will keep working for a world without cancer, with better help for the patients and their beloved ones, with more prevention. A world, with more happiness and joy! A world with warm and loving people, who know what and who really matters! A world were everyone knows: hope and love are always stronger, and no matter what you’re facing, you’re never alone!
Take care and lots of love!
There were 2 types of second generation drugs. One, which I would have to take twice a day, on a empty belly (read: 2 hours before the medication and 1 hour after the medication no food or other fluids beside water ( Hello, goldfish here I come!)) and 12 hours between the 2 doses, or the other kind with a more easier way of taking it, but with more chance of side effects on the heart or lungs. Because of my running, I didn’t hesitate a lot, and choose for the first type.
Because I had a continue lack of energy, and eating gave me the feeling (although for a very short period) my batteries were a bit more charged, I took the pills at 3 P.M and 3 A.M. So, during the day, I had less hours were I couldn’t eat.
To give you an idea, my mobile phone had 5 alarm clocks.
1) Stop eating (1 P.M.)
2) Take your medication (3 P.M.)
3) You can eat again (4 P.M.)
4) Take your medication (3 A.M.)
5) Get up! (7.30 A.M.)
Those hours seemed the best way, not interrupting my daily schedule of eating, running, resting,… But in the end, my heart pumped like hell, every time I heard the same tune as my alarm clock. Wandering and thinking: oh no! What time is it? Did I forget my medication? Do I have to eat something because my 3 hours of not-eating are coming their way?…
Sometimes I gobbled my food, whereby I felt like I’ve eaten a whole chicken in one, because my alarm went and I felt I couldn’t spend the next 3 hours without food. Nothing about food, was spontaneous anymore. Until I spoke with a doctor who said, it’s really important that you stick to your hours without food, but there is a bit of flexibility between your 2 doses a day. It doesn’t have to be exactly 12 hours and zero seconds. If one day, it’s better after 10 hours, because you have to go to a restaurant, then do it!
It was a relieve and I started to reduce my punctuality a bit, which felt calming! But after a few months, sleeping wasn’t sleeping anymore. I had to go to the bathroom a lot, because of the medication. But I also had my alarm clock in the middle of the night. 4 times interrupting your sleep, isn’t beneficial at all, believe me. For my boyfriend or family either;-).
The reason why I was so punctual about my doses, hours without food,… was because the doctor said, that the side effects were more severe, when you didn’t obedient to it. And the side effects were the first days so extreme, that it scared the hell out of me to feel that again!
After 2 days of the normal dose people have to take after using the first generation, I felt pain in my shoulder. I was scared that it had something to do with my heart, because an ECG (electrocardiogram) has been done before starting with the new medication and the doctor told that some people get heart problems with it. So I really hoped, the other shoulder would get hurt as well, because I did a hill training and I probably pulled too much on my arms to get the training done;)
After some time, the other shoulder started to hurt as well. But I wasn’t relieved at all! Not much later, everything in my body started to ‘fire’. I got a sort of electrical shocks from inside out, and everything started to glow in my body. First, I thought I would get the flu, but after a sleepless night and pain everywhere, I started to notice that wasn’t the flu at all!
I wouldn’t disturb my doctor, so I persisted like I had 300 teeth in my mouth, but at the end of the day, I called him. Because I had the tendency to minimize my problems to the doctor, he didn’t realize the seriousness of it, neither did I. He said I could take painkillers. But as you can imagine, that helped the same as using after sun, with the purpose not to get burned! Nothing, indeed.
Another sleepless night later, I really was desperate! What I felt, was such a pain, such a despair, that I would have given money to someone who was willing to knock me out for a while!
I really didn’t know, that such a pain was feasible without passing out. I couldn’t sleep, I couldn’t eat, I couldn’t bear clothes, I couldn’t open the door, use my arms or legs. Sitting was too painful, but so was walking, standing and lying too. So there wasn’t a thing, I could do, without screaming of pain. My mother called the doctor again and he was very startled and clear, I had to stop immediately with the medication. I had a grade 4-5 reaction on the drug, (5 is most of the time fatal) with a complete neurotoxic reaction! My heart showed dangerous deviations, my liver and other blood results were distraught like a hurricane passed and it was too dangerous to continue. I was so stupid to say: Doctor, if you think it will get better soon, I will continue! Because I was afraid that the last 2 days were fore ‘nothing’, and that I had to do it all over again in the future. But continuing wasn’t an option at all.
I had to stop for 17 days. Normally the plan was: stop until all the side effects are over. But they didn’t went over… It took really long before I could cut my own meat again, or opening the doors, or bear contact on my skin,… Even now, I still have nerve pain, not so much as then, luckily! But in bad days, people have to help cutting my meat, drinking is with a straw because I can’t lift up my glass without to much pain,… The electrical shocks are still part of the game, same as the nerve tension and muscle tension.
But after 17 days without any kind of drug, the doctor said it was too dangerous taking nothing.
Again, I had 2 options. Starting the other second generation, or, re-starting my medication, but with a lower dose. I hate it when I have the feeling not knowing something, and the doctor also preferred to try it out. So we started again with the same sort. I really was so scared!
Although we used mice steps, my body reacted like it were steps of dinosaurs! The side effects were celebrating a lot, but luckily, it stabilized every time, just below the tolerable border. Well, luckily? I don’t know… Every time I pushed my boundaries. Every time, the side effects went a level higher, simultaneous with a higher dose.
Sometimes, I stayed a few months on the same dose, because the cancer reacted well, and the side effects were getting to high. But every time after a few months, the cancer started to stabilize instead of reducing, and so each time, I decided to push through and tried a higher dosage.
Until it was too much. Running wasn’t fun and practicable anymore, because I had muscle pain and nerve pain all the time. I had the feeling that my body didn’t get enough blood and the impulses to my legs got stuck, all around, but for sure not in my legs.
I was tired all the time, couldn’t endure contact on my body, or social contact at all. But the overcharge of my nerve system and body went much further. Conversations between more then 2 people, were a nightmare. My concentration was disappeared. My body started to vibrate when I talked more then 30 minutes, or when I got tired. I got headache all the time and was continuously and at all times so tired. I really didn’t recognized myself anymore. I wanted to seclude, lost all my spontaneity and was mental and physical exhausted.
That was the point were I said to my doctor, during a check-up, that it wasn’t living anymore. It was surviving. Not only my running at international level, was no option at that time, but all the other things like working, thinking about a family, building a house, travelling,… or just doing nice things and enjoying it, neither. I really would enjoy life, but it’s really shit when you’re feeling too bad for it! And I got unhappy, trying to feel happy, but realizing that the medication devastated that too.
So at that point, we first had to be sure, that the cancer was stable. And that the cancer wasn’t the reason that I felt worse and worse every day. But luckily, that was okay, although it didn’t reduce anymore, but it was stabilized. So then, we decided to stop the medication for 2 days ( we learned luckily a lot from the first switch;)) and started the other second generation.
At that point, I was for sure scared , scared, for what could happen. But at the same time, I was even more, relieved. Relieved that something would change. That another medication could mean, complete remission or better side effects. And that gave me hope, hope to start a new chapter of my treatment for my cancer, after 3 years (14 months with that kind of drug) (June 2014).
Take care of yourself and each other!
I will tell a bit more about my historic in treatment, more specific, the first generation of drug for CML patients, which I would take about 16 months before switching to the second generation because of the side effects and too slowly decline of the cancer. I said it earlier: When I got diagnosed 4 years ago, my world collapsed. But the doctors said, ‘if you respond well on the drug and the side effects are good, you may expect a good life quality and quantity. Optimistic as I am, (luckily I grew up that way thanks to my parents), I was very certain that everything would be just fine. What else would you expect, if even the doctor said so!
I remember how I was looking at my first pill, the first day of my treatment. Although I was training for the World championships, I immediately said, okay, let’s start with the treatment now, because that way, I’m winning 6 weeks in the preparation for the Olympic Games next year. Those 6 weeks were the different between finishing my track season at that point, or doing a few more races in the summer. That wouldn’t be a big problem said the doctor who diagnosed me, because I got diagnosed in a very early stage, by ‘coincidence’.
Nevertheless, I felt the past months that I was so tired, got more sick, and my physical activity went more difficult. But the doctor who is my consultant now and specialized in CML (he was on holiday when I got diagnosed) said that 6 weeks waiting would have been a problem. Luckily I had already decided not to wait. So luckily, I wasn’t in China or Daegu for the Championships at that point. Looking backwards, those 6 weeks ‘winning with my treatment’ wouldn’t made a different at all, even years would be to short to get me ready for running at professional level again. Maybe even all the years that will ever exist. At least, as long as the treatment persists. And it hurts. Maybe even more because in the beginning, it looked all just possible. There weren’t problems at all. The doctors said it could, so why shouldn’t it? Don’t get me wrong, I know running isn’t everything. There is so much more in life. So many beautiful things. If you would tell me know, Lindsey, You will be cured, or even, you won’t be cured, but you will feel just fine but you have to stop running. I would say, Okay, If that’s necessary, where can I sign, although it is my passion, although it’s the most pleasant thing I do. Not just running, but pushing myself hard and enjoying it. But nevertheless, It would hurt.
The first pill
I swallowed my first pill and ate a bit. But almost immediately, I got a huge pressure on my chest. I tried to move on, eating my sandwich and reading the news paper, but I really got sick. I thought, Lindsey come on, don’t be silly, the pill is just in your body, you really can’t feel that! To be honest, I didn’t read the leaflet. Because you often feel the symptoms just by reading them. And I wouldn’t know it. The doctor said the side effects are most of the time minimal, so why would I be worried? (In the beginning, I got told that in the best case, I could reach complete remission after 1 year treatment, and after another 2 years (with the same drug and dose), there was a possibility to stop with the medication and become cancer-free and treatment free. So that was almost the only thing I recorded. Taking 3 years those pills and all would be over. The more frustrating it is now, after 4 years treatment, that even the complete remission isn’t a fact, not mentioning, stopping treatment.)
But after a minute, my mom looked at me and asked me if I was okay. I tried the minimize it, but at that point, it rather felt like an elephant was pitching on my chest. So I decided to rest in the seat. After 3 minutes in my seat, I was almost literally floating in my sweat and was short of breath. Is that how someone in the menopause feels herself? I was thinking. How should I know that? I was 22! I shouldn’t feel (or know) that at all. Although I had a lot to do that day, (I had decided to do as normal as possible), I canceled everything and my seat became my best friend. Luckily I didn’t know at that point, that would only get worse the coming months (and years).
Besides the sickness every morning, the first month went by, reasonably okay. I had headache more then before, but I kept running every day a few miles and I rested a lot. After a month, I thought the worst was over. But it wasn’t. The weeks went by and I became more tired each time I blinked. The sickness got worse and the running got shorter and shorter, until the point I had so much muscle pain in my calves that even the thought of putting a knife in it, felt like a relieve to release that pressure.
In the beginning, I wouldn’t bother my doctor with it. I wouldn’t be seen as a complainer. I was strong and they said the side effects are okay. So if I complain, then that’s because I’m to weak. And I’m not weak. So I kept my mouth shut. Until a few months later. The response on my cancer was good. But I felt worse every day. I collected all my courage and wrote a paper full of side effects I felt every day.
My doctor took his time, listened, but didn’t wrote anything down. At the end, he just said, “that can be as a result of the drug. But we can’t do anything about it. Maybe, normally, after a few weeks or months, they get better.” My courage sank as a brick to the deepest part of the ocean and I got home. With the feeling of empty hands. Oh no, full hands, with the same drug which I started to create a love-hate relation with. I knew it gave me years to live. But it started to feel more like surviving then living. And I felt far more worse with the drug, then with my disease itself.
It was (and still is) a struggle with myself, not finding myself weak. If I hear patients with minimal side effects, I’m really thankful for them. But at the same time, I’m thinking, what am I doing wrong? Why am I feeling all those things. Or, am I not hard enough for myself or even worse, exaggerating it? And no, I didn’t felt them before I got sick. A question my doctor once asked. I must have looked like I just swallowed a canary when he asked that. Was he serious? If I talk about tiredness, then it isn’t tiredness because of staying up late, or getting out, or doing things. No, it’s so different. If other people tell me, Oh lindsey, I’m tired too, then my eyeballs are rolling to the other side of the world. Because that isn’t the same at all. I wish it was. Really. But you can’t understand it, if you haven’t experienced it. And luckily, they haven’t. At the same time, I felt myself so alone. I looked not sick, I had all my hair, wasn’t lying in the hospital, so everything was okay for the outer world. I’ve heard it a lot: ‘oh, you just have to take a pill!’. But it wasn’t okay at all. At all…Maybe that hurt even more then the side effects.
But after more then a year, I didn’t reached even a major molecular remission, and the side effects kept increasing, so we started talking about changing treatment to a second generation. More stronger, and with other side effects but with the possibility of a decline in cancer, because it is more selective medication.
The doctor gave me the choice. Changing or waiting. I really got cantankerous about thinking about the choice. How do I choose that? Not, is the answer. So I got a second opinion in an other hospital. I showed my results, told him my side effects and asked him what he would do. For him, it wasn’t a discussion at all. Changing was the only right thing to do. I was relieved, because an expert, who knew everything about it, told me the best thing to do. Because then, even how the outcome would be with the new drug, it wouldn’t be my ‘own fault’ if it was worse.
I went back to my own doctor and told him about my second opinion. I believe that every doctor who is respecting him/herself and believing in what he/she is doing, doesn’t have a problem with second opinions. It’s even important that patient and doctor are believing in the treatment and each other, to improve the outcome of the treatment. As I expected, he didn’t had a problem with it at all and we both decided to change to the second generation after 16 months of treatment with the first. It was a big step for me. I was afraid and relieved at the same time, because I knew, things would change. In which direction, that was the question.
At the age of 22, I’ve heard the 4 most destroying words in my life, You have chronic myeloid leukemia. I didn’t know what it was, what I could expect, but nevertheless, my world fell apart! A few months earlier, I became sixth at the European Indoor Championships at the 1500m (Athletics) in Paris and ran a Belgian Record at the same distance. I was ready to move further and was really training hard for the Olympic Games in London 1 year later (2012). One day after my diagnosis, the newspaper screamed the words: 1 Year until LONDON. And I was crying like hell.
Symptoms before diagnosis
The diagnosis came as a shock. I was tired indeed, but I was training 12 times a week and was also studying to become master in physiotherapy. Anyone would be tired then. But the weeks and months went by, and I felt that my training went well, but not like before. I had a lot of headache and inflammations of the throat. I was very good in ignoring those signals. In my eyes, it weren’t signals at all!
But 1 week before my diagnosis, I had the European Championships for the Under 23 age- group. 2 years earlier I became 4th and now, I was a lot stronger, faster and better. So I really went for a better place. But that didn’t happen at all! I was 9th with a very strange and bad feeling during the race. My sports doctor checked my blood again, because they expected a low level of iron. But they saw that my withe blood cells were again increased. That was also the case during the previous months, but we always had an explanation. Training, tired, maybe a little infection,… But now, the amount was too much, to be ‘nothing’. So he decided to go to the department of hematology at the University Hospital in Leuven (Belgium). ” Just to be sure” and with the faith that afterwards, the focus could be renewed on “training and performing at the highest level possible.”
I soothed everyone, even myself. “You can’t train like that, you can’t do those things, when something bad is going on! So everything will be okay.” But it wasn’t. At all.
I couldn’t believe it. I thought it was some kind of sick joke. I thought the hospital was wrong, that the test-results were false positive. After the shock, no, during the shock, my thoughts went to my running, what about my running? Running was the biggest part of my life. While my mother asked how the life expectation and life quality was. I rubbed my eyes in disbelief by hearing her ‘stupid’ questions. But the doctor shook me back to the reality by saying that these were very good questions.
The answer we would here a lot, until I couldn’t hear it anymore, was: If you react well on the medications and the side effects are okay, your life expectancy and quality of life will be okay. Even your sport at highest level can be a possibility. That would turn out to be even more removed from the truth than saying that elephants are green and the sky is pink, but at that moment, it was like the only branch of wood in the whole ocean. It was either believing in it, or sinking. And so I believed in it with all I had!
Treatment & my life today
At this point, we are more almost 4 years further and a lot has happened in-between. I haven’t reached complete molecular remission (yet) and I’m busy with a third type of medication. The side effects are really disturbing my life and although I’m trying as hard as I can to keep reaching my dreams and goals, the treatment makes it very hard. If I would believe in the word, which I don’t, I would even say, some became impossible.
Every check-up in Leuven, doctors are looking at my cancer, while I’m looking more and more for solutions, feeling better again. Another amount of medication, or again another sort, or whatever else that has the possibility to improve how I feel. I need the hope that this won’t be ‘forever’, that my life won’t always revolve around doctors, medication, side effects, tiredness, headaches, and a big lack of energy! I’m too young to sit in a chair, ‘happy to be alive’ but no much more than that. I get older people, who are saying that. I really do. But I’m not old. I am at the age were I should by at my strongest, where I should do all those crazy things, or just knowing that I could do them, if I would want it. Not waking up and deleting 9 out of the 10 ‘normal’ things I wanted to do today but can’t do because of how I feel.
Don’t get me wrong; I have a lot to be thankful for. But when I get the opportunity to live, when cancer gets to a chronic stage or chronic disease, I really want to live, not only survive. And because I believe there is a solution for everything, I will keep looking for it until I have found it. I keep believing in a world without cancer!
Lots of love!