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.
Take care!
love, Lindsey