The Roller Coaster Ride

Ahhh, the roller coaster ride of living with CML. Just the other day, aka yesterday, I posted about how "in 2014 I learned to better manage the side effects of my leukemia and how I feel better than I have since being diagnosed with CML."

Just one day, wait not even a full day, a half a day later all of that was about to change.

Today I went in for my quarterly checkup with my oncologist. Well let me back up a little... the previous checkup in October wasn't so great. In short and simple, the goal of my treatment is to kill all leukemic cells in my blood. They measure this by a %. The goal is to be at 0% or undetectable, meaning that the meds are doing their job and killing all the 'bad cells' or leukemic cells. So every 3 months I go in for testing to see where we are and cross fingers that I'm at 0%.  I have basically been at 0% since I started treatment. When I was diagnosed, I was only at around 13% meaning 13% of my blood cells were leukemic. Because of that we realized we caught it very early as most people when diagnosed are at a much higher percent. So anyways, 0% is where I've been, which is great. The best part is almost a year ago, we lowered my dosage enough to where it was still being effective and minimizing the side effects, which was great. When I started treatment, I started off at 400mg of Gleevec, it worked great but the side effects were debilitating. The energy was literally sucked right out of me, I was nauseous about every night and hugged the porcelain thrown more than I ever wanted to, had bad mornings, had horrible headaches, felt completely dehydrated, and also had a whole other slew of side effects. Every day was a struggle. It wasn't fun. It was to the point where I had a very serious conversation with my oncologist and told him quantity of life doesn't mean anything without quality. So with trial and error, we successfully reduced my dosage to 300mg and for the past almost year, it's still been just as effective (still at 0%) AND my side effects became better to manage and as mentioned "I felt better than I have since being diagnosed with CML." Reducing it by 100mg doesn't seem like a lot but it made a huge difference. 

Last October, my results came back detectable, a small % of my blood cells were leukemic, meaning the medicine wasn't being as effective and wasn't killing all of the leukemic cells. Today is the first time I've seen my oncologist since and he decided he wanted me to increase my dosage to at least 400mg starting today and maybe more pending the results of the blood work I did today (will take a couple of weeks before I get the results). As if that wasn't bad enough to hear, he even mentioned increasing the dosage to 600mg or moving to a different medication for treatment.

Luckily today was a busy day at the office so I didn't have much time to really think about what all of this means. On my way home, it finally hit me, and I cried out of frustration. I feel like these past couple of years I've finally made such good progress is learning how to live my new 'normal' life, that my body has finally adjusted to it,  and now it's getting ready to change again. 400mgs means back to nauseous nights, horrible mornings, not having any energy, having bad headaches, and always feeling dehydrated.  I don't even want to think about the side effects with doubling my dosage to 600mgs. And if I have to switch medications all together, that means my body is going to have to readjust to the new side effects it will bring, and if it is anything like the Gleevec, it will take a couple of years for that to happen.  And on top of that, until we can get this under control constantly, more children is out of the question. That is the worst part for me because more children is definitely something I want and it seems like every time I'm hopeful it will happen, here comes another setback. So frustrating.

Tonight I'm going to bed feeling anxious, feeling emotional, and just feeling frustrated. But tomorrow when I wake, it will be okay because I know I can't control it, I just have to embrace whatever comes. 

If you are new to CML, you can follow my entire journey here.

Change

Change is something we all often struggle with. I, for one, often resist change. I still write checks, I keep the postal service in business because I still mail my bills, and still read paperback books. Why? Well just because that's how I've always done it.  However, I've always been a believer in changing yourself, not for someone else, but for yourself. To continue to improve yourself, to grow, to become better than the you you were yesterday. But what I learned this past year is change isn't always planned, sometimes it just happens, and it happened a lot in 2014.

In 2014, I learned how great wearing comfy clothes really is and how wonderful sitting on the couch and watching TV or a movie can be. It's no secret that I've been one to over commit. Before graduating college in 2013, I worked full time, went to school, raised a very busy little boy, and was involved in several organizations. Being busy was all I ever knew. And then I married TJ. A guy who wears sweatpants 80% of the time and can quote almost every movie ever. He's a homebody-- totally opposite of how I was. But over time, he started to rub off on me, and I will admit, I kinda like it, a lot. I've bought more sweatpants and yoga pants and have sat on the couch drinking a glass of wine, watching a movie more times in the past year than I probably have in the past 10 years. 

In 2014, I learned to better manage the side effects of my leukemia. I realized how bad sodas made me feel and now *gasp* only drink one caffeinated drink a day (tea) and drink only water the rest of the day, a lot of water. Me, this girl, the one who literally grew up on Coke and only drank water if it was the only option.  But all it took was one Monday (I remember it well) when I was side effect sick, I drank a soda, and realized it made me feel 10x worse. It was that day I decided I was done with soda, and it's been water ever since.  Somehow I also became lactose intolerant and can no longer drink milk nor eat ice cream. That's been a bummer because I loved me some milk but am working to find an alternative that is just as good. I started taking more vitamins and have became a huge believer in Airborne. I consistently have a low white blood cell count which means I'm at risk for getting sick very easily. However, anytime I feel I'm coming down with something, I start taking Airborne on top of the other vitamins I'm already taking and I feel it's because of that I (knock on wood) rarely get sick, other than side effect sick.  I get more rest because I realized my body needs it. I mean, I guess I understand, fighting off cancer everyday is grounds for being exhausted. Because of that, I go to bed around 9:00pm. There have been times I've gone to bed even earlier. There are even times when I have to lay down during the day, and luckily have a job that can accommodate to that from time to time, because my body needs it. I still often have a headache and battle fatigue, but the nausea isn't as bad and it's been weeks since I've gotten sick from my meds. Even though I still don't feel great every day, I feel better than I have since being diagnosed with CML.

In 2014, I learned how to disconnect.  I have a job that is very demanding of my time but I absolutely love what I do. It's a perfect fit for me as I believe in our mission and there is no such thing as a boring day. However, there are times when after a full day at the office, I'll bring my laptop home and continue working until bed time or over the weekend. I don't like coming in to the office in the morning feeling overwhelmed so I often use my free time to catch up. But what I learned is how quickly it can consume my time without me even realizing it. There have been nights where I've sat on the couch working and Talon has asked me to tuck him in and I'd tell him I'd be up shortly. An hour would pass and I'd finally make my way upstairs only to find my sweet little boy fell asleep waiting on me. Talk about feeling like a bad mom. It's in those moments I realized how important it is to disconnect. And I'll admit, it's something I'm still working on but step one is realizing it's a problem, right? Right.

In 2014 I learned to slow down and focus only what is important-- my family and just enjoying every moment with them.  I've made sure to spend as much quality time with Talon as possible, whether it's playing a game together, going bowling together, or just laying in bed and watching his favorite show together. Another thing I love about my job is it also allows me to still be the mom I need to be even with a career. There are some days I have to go in very early or work very late but for the most part, I get off by 4:30 and have plenty of time to do my mom duties and still spend time with Talon. When Talon's on break from school, it's never an issue if I have to bring Talon with me to work or to work from home to be with him when he's sick. And I'm so thankful for that. With losing both of my cousins, the quote 'tomorrow isn't promised' became a reality and I realized I don't want to wake up one morning and regret focusing on things that didn't matter instead of spending as much time as possible with those that do. 

Last year I stopped making New Year's resolutions, just to continue following the path God has created for me. This year I plan on doing the same. My only hope for 2015 is that it is a year of comfort, healing, and peace for my aunt, uncle, and the rest of my family.

From my family to yours, Happy New Year.