Lindsey D
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Life's roughest storms, prove the strength of our anchors

Lindsey D
Posted by
08 Jun 2015

More about the storm I went through, before switching to the third kind of oral cancer medication for my CML. (April-May-June 2015)

After the first generation and my switch to the second generation (and the decision witch one of the 2 kinds it would be), I felt again worse and worse, so we had to decide what the next step would me. The most logical one was, the other kind of the second generation of oral cancer medication. But that didn't felt like a solution for me at all. I hate all those side effects, feeling tired al the time, having pain almost always. I really needed a way out! A real shot on living, not surviving! The next part goes about my feelings that time.

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.

In my next blog, I will tell you how the switch went! 

Take care!

Lindsey

Comments

09.06.2015

Lindsey,

Thank you so,. so much for writing and sharing this blog. Reading it brought the decision making process flooding back for me personally. I have to say I don't think I thought about it anywhere near as deeply as you did and ended up going with the bone marrow transplant as it was the only known 'cure'.

I'm still here 11 years on and don't regret my decision even though there have been complications in recent years as a result of the chemo and radiotherapy that I underwent. Your doctor was right to fill you in on the risks attached with transplant and there are many.

I guess transplant remains an option for you in the future if treatment doesn't go well.