Lindsey D
Posted by

Never say the sky is the limit, when there are footprints on the moon!

Lindsey D
Posted by
03 Dec 2014

Hi!

I'm a Belgian, 25-year old (or young;)) women and live near the Bruges. English isn't my native language, so I'm sorry for the possible faults in my blog! 

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 Londen 1 year later. One day after my diagnosis, the news paper screamed the words: 1 Year untill 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. Im my eyes, they weren't signals at all! 

But 1 week before my diagnose, 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 heamatology of 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.

Diagnosis

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 shaked me back to the reality by saying that these were very good questions.

The answer we would here a lot, untill 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 seperated 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 than 3 years further and a lot has happened in-between. I haven't reached complete 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, that treatment makes it very hard. If I would believe in the word, which I don't, I would even say, impossible. 

In my coming blogs, I will talk a bit more about the past 3 years, but for now, I can say that December will be a 'doctor' month again. I have my monthly 'big' check-up in Leuven, where they will have a look at my cancer, but I'm also looking for a few other solutions, maybe an other amount of medication, or again an other sort of, or whatever. 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 nothing 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 want. 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 oppurtunity 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 andd will keep believing in a world without cancer!

Comments

03.12.2014

Hi Lindsey,

Thanks so much for sharing your experiences of CML with us and for doing so with such excellent English which I think might be better than mine!

I can totally understand your frustrations being so young and have felt a lot of similar feelings (especially recently) after my own treatment for CML. I'm 30, and whilst not an international athlete, absolutely adored long distance running and football. I've run marathons and used to play football regularly but due to complications with my lungs post transplant for CML I have a significantly reduced lung capacity and now running for 25 minutes is a struggle.

It's taken time for me to re-adjust but I'm getting there and I think the key thing is to remain positive, adjust your goals when it comes to exercise as frustrating as that will be but never give up hope as treatments are improving all the time. I was diagnosed with CML in 2003 and in the 11 years since then there have been enormous improvements which mean that more and more patients are not only surviving but going on to lead perfectly normal lives. However, we do not want to stop there and will not stop until we beat blood cancer for good - you can rest assured of that!

In the meantime, keep blogging as you write so well and will really help others who are in similar positions and never, ever give up hope! You're clearly someone who is very driven with a real will to succeed - you wouldn't have got to where you got in athletics without it - so draw on that now and don't be afraid to ask for help. Stay strong and thanks again for your brilliant blog.

Anonymous
03.12.2014

Hi Lindsey,
I just wanted to tell you to stay strong! I also have CML (diagnosed at age 30) but it was found three months after I completed treatment for Primary Mediatinal B Cell Lymphoma. Turns out I had lymphoma and leukemia at the same time! My world was turned upside down at 30, and while things are doing much better now, I'm not perfect. I still live with neuropathy pain almost every single day. I'm lucky that I've made it to a compete molecular response on the TKIs but it certainly wasn't easy. My doctor had to make three dose adjustments and things are finally holding at 200mg on Tasigna.

Just don't give up hope! I used to be super active before my diagnoses and it took me close to three years to get back to working out. I still deal with pain every single day but I've learned to push past it when I can and deal with it when I can't. It takes time to accept and adjust to a new you, but it will happen. I live in London (even though I'm american) so if you ever wanted to meet up let me know! I have tons of lymphoma friends but can't seem to find many young people with CML to interact with. Good luck to you!! And fantastic blog!! :-)

Anonymous
04.12.2014

Hi Rachel, If you want, you can send me an e-mail (Lindsey_degrande@hotmail.com). The majority of the people with CML are indeed (a lot) older and are mostly dealing with other problems then the younger ones.
It would be nice to chat sometimes with each other!
I know neuropathy pain is hard to deal with, and the cold whether doesn't make it easier! Take care and good luck!
x

Anonymous
04.12.2014

Hi Andy,

Thank you for your comment! Although I have my doubts about the term ' perfectly normal lives' with those medication, I know that the treatment possibilities are a lot better than a few years ago! But indeed, we have to keep fighting untill all the cancer is gone!

It's great to hear your positivism and I hope things will get better for you too!
Take care!
Lindsey

Anonymous
27.12.2014

Thank you so much for sharing, Lindsey. I was diagnosed Dec 2010. Although not very active, I was energetic. I had a good response, but the side effects were awful: tiredness like you describe so that it honestly felt like 3 am the next morning at around 11 am! As for my memory and ability to think, well! Just to say that I even left my front door open with the keys actually in the lock pretty much sums it up! Four years on, I have a little more energy but still need to sleep each afternoon or pay the price, but a reduced dose of Dasatinib has seen some of my mental ability come back. I'm adjusting, still, but have more positive days than bad ones by a long distance, now, and am facing life was it is and try to make the most of each moment. It's hard, and sometimes horrid, but it is what it is.

Thank you so much for sharing. It's so good to hear I'm not alone in having these extreme symptoms... so I hope it's good for you to know you're not alone either! Stay positive, enjoy and savour everything you can! Huge hugs from England!

Anonymous
27.12.2014

I am a 10 year BMT survivor..I had AML. I highly recommend the BMT approach. Then you can get on with your life.

Anonymous
27.12.2014

'If life gives you a hundred reasons to cry, show life you have a thousand reasons to smile' - never ever give up, fly headlong into the rest of your life Lindsey xx Chris

Anonymous
28.12.2014

Hi Lindsey, I believe that not only does cancer change your life, it changes you for life. Coming to terms with those changes for a young fit person is really hard. You might feel that you are a new, different person and you have to learn to live a different life, and with that new life will come new goals, aims and ambitions. It's really hard to accept that there are some things that you won't be able to do, but there are plenty of things that you will be able to do, they might just be different! Good luck.