Dating Leukemia

So I like to think I bring a lot to the table in a relationship- fun, honesty, loyalty, randomness,  compassion,  a tight knit family, an awesome 7 year old, and a whole lot of love....

... and leukemia.

When I was diagnosed in 2012 with Chronic Myelogenous Leukemia, I didn't really think about how this could or would impact a future relationship, but it does.

When I'm having one of my bad days, or develop a new side effect, or a new symptom, or am just feeling concerned about my health, the only person I really talk to about that is my mom. Why? Because she's my mom. She's more concerned about my health than I am. And as a mother, I totally get that. I can complain to her about how I'm feeling, or vent about how frustrating it is when my medicine that I have to take every day for the rest of my life makes me so miserable, and never would she think that I'm being a baby, or whining, or being needy. But to the rest of the world, I put a big smile on my face, even when I don't want to. Why? Well mainly because I don't want to come off as a complainer nor do I want anyone to feel sorry for me. And I don't want me having leukemia seem like a weakness. But mostly, that's just who I am. I try to stay positive, and optimistic, because the world has enough negative Nancys  and pessimist Petes. So the last thing I want to be is a Nancy or a Pete, no offense to any Nancys or Petes out there. But you know what I mean.

So I smile.

And I tried pulling that stunt with TJ. He was aware of my diagnosis, but initially we never really talked about it in detail. That's because I didn't want to. Dating and having a child is one thing. Dating and having leukemia is a whole 'nother. Dating someone who will spend her lifetime taking a medication that makes her sick, who will have hundreds of thousands in medical bills each year (thank goodness for insurance), who may not be able to have any more kids,  and who could potentially not live to her full life expectancy, is enough to scare anyone away and make them want to run.  And the last thing I wanted to do was scare TJ away. So I hid it as best as I could. But it didn't work. 

There was a time I went to the doctor because I was concerned about a new symptom. I didn't tell TJ. But when he text me while I was there and asked what I was doing, I couldn't lie. And his response, "why didn't you tell me? " My response, "I don't want you to worry."  And I don't. I don't want anyone to worry.  Then that's when he had "the talk" with me-- he told me he always wanted me to be honest with him about my health, and talk to him anytime I was concerned. He wanted to be there for me. And he has been. Anytime I'm nauseous, or have a horrible headache, or just not feeling well in general because of my medication, he offers to do whatever I need, whether it be get me a drink, food, or just let me be. And he willingly does it, because he wants to. Because he loves me, for me, leukemia and all. I can't explain how great it feels to have that extra support. I've always received it from my family, but never imagined I would receive it from somewhere, or someone else. 

And just this past week, he proved to me again that me having leukemia, no matter how it may impact his life, is not enough to make him run.

If you read my post back in December, then you know when I went in for my quarterly testing and checkup, I asked my doctor to reduce my dosage of Gleevec. Since being diagnosed, I have been taking 400mg of Gleevec daily. While this quickly got my leukemia under control, it didn't come without a lot of side effects. Side effects that can make it hard to function day to day. My doctor agreed to drop it down to 300 mg to see how I did on that, but I decided I was going to go even lower to 200mg. I have read where several people only take 200mg and it still controls their leukemia. I thought it was worth the try. 

The next four months were great. I was feeling better, I had more energy, I was getting sick less often-- life was good. I was excited. I could handle feeling like that for the rest of my life. 

But the happiness was short lived. I went back for my quarterly testing and check up a couple of weeks ago and got the results last week-- my leukemia was progressing. My doctor assumes it's because the dosage wasn't strong enough and bumped me back up to 300mg. But in the event that my body is just no longer responding to Gleevec, then I'll have to try another treatment. We'll find out in 2 months. 

This was heartbreaking news for me, for a couple of different reasons. One, I didn't want to increase my dosage because I knew it would just make me sick. A week later with the increased dosage, I'm having horrible headaches, I've been completely dehydrated, my face is swollen in the mornings, and  I just don't feel well. I'm back to square one. And it's frustrating. 

But then the thought that I may not be able to have any more kids really sank in. I knew that was a potential, but for some reason I thought it wouldn't be an issue with me. You see, not a lot of women in the 'childbearing years' have CML. So there isn't a whole lot of research/studies on women with CML having children. What is known is that Gleevec causes birth defects, so women who want to have a child must stop taking it. Generally they are off it for a year or more. People sometimes stop taking Gleevec for whatever reason. Sometimes it's months or even a couple of years before their leukemia starts progressing.  But here's the thing-- I didn't even stop taking my medication, just reduced my dosage and within a couple of months, my leukemia progressed. So that means if I didn't take it at all right now, it would really progress and who knows how serious or life threatening it would be within a year or more. It was a heartbreaking realization. 

And when I had to tell TJ, I was worried how he would react. We have talked about maybe having more kids at some point. And with this new news, that may never be a possibility. And before even letting me explain what all this means, these were the texts he sent me::

"With your health, I'll never ask you to stop taking your medicine to have a child. We can always adopt if you want to."

"Take your medicine like you're supposed to. Don't cheat me out of time with you. I'm committing to you and to live with you, not without you."

Still not running. How did I get so lucky? 

I know my leukemia will always impact our relationship, but TJ constantly reassures me by his words and actions that no matter what happens, he will always be by my side. 

And that's one of the many reasons why I love him.