A Health Confession

So it's been a couple of months since I gave my last health update, which was a good one. In case you missed it, you can read about it here. Because of that, I decided to go ahead to give a current update. Well, not really an update, more of a confession really.

A couple of weeks ago, I went to the beach with some of my favorite friends. It was a very much needed break from reality that I really enjoyed. And even though I missed my sweet baby boy, I had a fabulous time. Not only did I have a fabulous time, the best part was, I felt amazing. I had so much energy, I never had a headache, never felt nauseous, didn't have to go to bed early or take naps because of extreme exhaustion, never woke up with a puffy face, and could eat and drink whatever I wanted without it making me sick. I felt like I did before beginning my treatment for my leukemia.  I forgot what that felt like. And this is what I did....

 

 

 

I took full advantage of it and had so much fun! I really felt like this puppy in this picture. So why the change in health? Well, here's the confession part (and the part that when I told my mom, I thought she was going to ground me, in my own house....), I didn't take my Gleevec (the medication that keeps my leukemia in check) while I was in Florida. I know, I know, that sounds like a dumb idea, especially since my life depends on it but let me explain. I knew that if I did take my medicine, the car ride would have been miserable because I would have been sick , and I knew that I would be spending most of my time in the condo, 'taking it easy', versus spending time outside, having fun with my girls. I just wanted to feel 'normal'. And I did. And I know that sounds a little (a lot) selfish, but it has been almost a year since me being diagnosed and my life was turned upside down and I wanted a tiny break from that.  

But before you think I'm jumping off the deep end here, there really was some thought behind this. Now I know I'm not a doctor but from the research I have done, I don't think not taking my medication for 5 days will hurt me. If I did it often, yes, but a once every blue moon, no, I don't. Here's why:: When many people begin taking this medication, it's very common for them to take 'breaks' when the blood counts are too low or the side effects are really bad. Furthermore, if I were to have more children, I wouldn't be allowed to take the medication which mean I would be off it for 9+ months. It's obviously not recommended because the medication is what keeps the leukemia under control but there are times when you do have to take a break from it. Now I know my reason for not taking it for a few days is not one of those reasons but I felt okay with making that decision. And boy was it worth it!

But there is a flipside to that:: Not only did I feel absolutely wonderful for those 5 days, it made me realize just how bad that medicine makes me feel. We got back home Sunday night but I decided to skip another night of taking my Gleevec because I knew it would be hard enough getting up Monday morning for work from being exhausted from the trip and the 10 hour drive back, I didn't want to make it any harder. I woke up Monday morning, so  tired, but still felt great and had a very productive day. Then comes Monday night, I get back into the routine, and take my Gleevec before bed (I take it at night in hopes to sleep through the worst of the side effects), and when I woke up Tuesday morning , it hit me like a ton of bricks. I woke up with the worst headache, completely dehydrated, and felt like the life had been sucked out of me.  It was back to reality. While laying in bed, trying to drag myself out of bed, I began to cry. I was crying out of frustration. What is so frustrating is, it's not even the leukemia that makes me feel this way, it's the medication I take because of it. How can I go from feeling so good to so bad so fast? I guess I have been so used to feeling this way, it wasn't until not taking my medicine for a few days that I realized just how much it really effects me. It's more than just having a busy day and being tired from that. It's more than just feeling like you over did it. It's a feeling that it's hard to explain. It's literally feeling like the energy has been sucked out of you and when it hits you, there is no fighting it, there is not energy drink out there that can make it go away, you just have to lay down, no matter what time of day it is or where you are. It's a feeling of dehydration that no amount of water can make go away. it's a feeling of nauseous that you just have to just lay still and hope that it passes. It's frustrating. Plain and simple.
And I say that but at the same time, I can't help but feel guilty for complaining because the alternative to feeling that way is death. If I choose not to take this medicine, my life expectancy would be approx. 5 years. So it's easy to see that this is a small price to pay for life. But at the same time, this experience made me realize that I don't want to feel like this for the rest of my life. I am only 27 years old. When most people are diagnosed with CML, they are usually much older. I have my whole life (God willing) ahead of me and I don't want this to dictate my life. And because of that, I have made some decisions:

1. When I reach my 12 month mark, which will be in August, if everything is still going well, I'm going to request that my oncologist to cut my dosage in half. I currently take 400 mg of Gleevec daily. Many people only take 200 mg daily and their results are still good. This should alleviate some of the side effects I face daily.

2. When I reach my 2 year mark, assuming all is still going well, I'm going to request to be taken off Gleevec. Now I know I just mentioned if I were to stop taking Gleevec, my life expectancy would be approx. 5 years so this may seem like a death sentence. BUT, let me explain. There are currently clinical trials underway in which people don't take any treatment for CML. I would participate in this clinical trial so I would be monitored very regularly. The best part about this cancer is it's slow growing. Because I would be monitored regularly, the doctors would catch it very fast if the leukemia started to progress due to the lack of treatment. If that were the case, I would begin taking the Gleevec immediately at first signs of progression. If the Gleevec no longer worked, there are currently two other medications that help control CML. If those don't work, then I always have the option of having a bone marrow transplant. Now that's def. worst case, but the point is, I have options. There are currently several people partaking in this clinical trial. Most people who were at "0", like I am now, have relapsed (most within months) and had to begin treatment again (and are still doing well). I know that doesn't sound promising BUT there is a small percent (like 3%) who after 10 years without treatment, are still at "0". What if I could be a part of that 3%? Even if it were just for 10 years, 5 years, 1 year, to feel like I did while I was on vacation, to feel like I did before beginning treatment, I feel like it's definitely worth taking that chance.

Until then, I'm just going to grin and bear it and pray that my results continue to stay good after each test so I can one day feel as good as I used to. I'm determined to feel as good as I used to.