Living With A Chronic Disease

Two years now I've been living with this thing they call leukemia, Chronic Myelogenous Leukemia to be exact. Also known as CML.

I remember the day I was diagnosed so vividly, the whole experience leading up to my diagnosis really. Every moment, every thought, every fear, and hearing those words uttered by my oncologist-- 'you have leukemia'. I didn't know what to expect aside from what my doctor had told me and what I had learned from the little research I did. So to say these last couple of years have been a learning experience, well that's an understatement to say the least.

Year one was rough, and not because of the CML itself, but because of the Gleevec. Gleevec is a targeted type of 'chemo' that only kills the 'bad' cells. Since there is no cure for CML, it's something I'll have to take everyday for the rest of my life. There are three stages of CML. The goal of the treatment is to keep you in the first stage, which is where I was and still am and will hopefully always will be. CML doesn't make you sick until you reach the second and most definitely the third stage. So the 'roughness' I had to deal with was adjusting to my medication.  A lot of medications come with side effects, that's a given. If I take a phenergan, it makes me soooo sleepy. If I take certain types of prescription pain pills, it makes me itch. Imagine taking something that kills your blood cells. Yeeeah.  Year one was filled with nausea, extreme fatigue, rashes, anxiety, headaches, edema, bone pain, and dehydration, just to name a few. I couldn't make it through a full work day so I began  working from home. I had to cancel some trips from being too sick. My social life became pretty much non-existent because I was way too exhausted. I was leery to try most foods because I didn't know how it would react to my medication and I didn't want to chance hugging the toilet more than I had to. More days than not I didn't feel good. I can't tell you how many days and nights I just cried out of frustration. And then there was the bone marrow biopsy and aspiration. Seriously the most pain I've ever experienced, ever. If you know of anyone who has to get one of these, buy them an ice cream cone or something. Trust me, they'll deserve it.

Then there was year two. And it was soooo much better, and more consistent. Most days I'm still dealing with the extreme fatigue, dehydration, headaches, and nausea. I know that still sounds miserable (and it can be) BUT here's the kicker-- I've finally began to learn how to cope and manage it. One of the first things my doctor advised me to do was to 'listen to my body'. Yeah okay, like my body is going to talk to me. Turns out, there was a reason why he's the doctor and I'm not. He was totally right. When I'm tired, I lay down. Most nights I'm in bed by 9pm. Not because I want to be, but because I know if I don't, then I won't feel good the next day. I've learned not to overdo it because if I do, I'll pay for it the next day. I now only drink one caffeinated beverage a day. If I try to slip in another, I get the biggest headache and feel 10x more dehydrated than I had already felt. I drink more water, I've learned what to eat and what not to eat. I've learned that I can't do and be the way I was before leukemia, that I have no choice but to adjust and make a lifestyle change, whether I want to or not, because if I don't, I'm going to be a lot more sick and miserable than I have to be. I always have water and sour candy with me at all times (the candy helps with nausea, so does pickles, weird I know) I try to always drive when possible because otherwise, I'll most likely get car sick. I've learned when to take each of my 10-14 medications each day, and what it take it with. I've learned not to take a certain medication after eating greasy food.  There are only a few days where I feel 100% good but most other days, I'm about at 80%, which is a lot better than the first year. But low and behold, there are still some days that no matter what I do, nothing helps, and I have no choice but to lie at the mercy of the side effects and just try to sleep through it. And those days are still emotionally tolling. If you read my post a couple of months ago called "Cancer Pass", then you know what I'm talking about (click here to read).

It's on those days that I remind myself of a quote from a fellow CML patient:

"The truth is, there is nothing easy about chronic diseases. At the best of times, they are a nuisance that we keep in mind, but at worst, they take hold of our personal and professional lives. My own career choices have at times been altered because of it. One of my biggest regrets will always be not being able to follow through on a dream because of it. So I adjust the sails, and try to compensate, and everything works out in some way, whether for the best or not. And we hold on until it retreats into the background once more. We hold on, and we hope for the better day. Because on those days, we are infinite." 

So true, so so true.

I think what has really changed from year one to year two is acceptance. Initially, I was determined to live my life as I did before being diagnosed with leukemia.  But I finally realized that whether I liked it or not, if I didn't want to be miserable, I would have to adjust my life. And I did. And you know what, it hasn't been so bad. The best part-- I still get to pursue a career that I love, I still get to do most of the things that I love, I still get to spend time with my sweet baby boy and family, I still get to marry the man of my dreams, and a second chance at life which I've recently been reminded is a true blessing- all of which wouldn't be possible if it weren't for the medication that causes all of these pesky side effects.

I think I can handle that trade off. 

(Picture of my cutie supporting the orange for his momma)

The next obstacle for me will be having more kids. I'm hopeful it will happen but only time will tell....

To follow my entire journey from beginning to now, click.here.

Confession: 

One of the best things I could have done this past year was to join a CML support group. It's been wonderful talking to other people around my age who are also living with CML.  It makes me feel not so crazy when I hear that they are dealing with similar issues as I am. I've also connected with some newly diagnosed CML patients to let them know what to expect, how to deal, and offer encouragement, support, and hope. It's been very therapeutic.