1 Month Down, The Rest Of My Life To Go

So it's been about a month since I was diagnosed with CML and began my treatment. And in this month, I've researched, I've read about other people's journeys, and I've learned how this is going to affect me, for the rest of my life.

As I have mentioned, treatment for CML is by a pill called Gleevec. Gleevec is labeled " the miracle drug", and now I understand why. Gleevec is a targeted therapy. Unlike chemo, it kills only the 'bad' cells. As a result, it is less harsh on your body. Gleevec was just approved by the FDA about 10 years ago. Even though Gleevec will not cure this type of cancer, it will control it. And with that being said, the survival rate is 95%. Prior to Gleevec, once you were diagnosed with CML, you life expectancy was for about 5 more years. It's hard for me to wrap my mind around that. If it weren't for this new type of therapy, I probably wouldn't make it to my 30th birthday. But there is this pill, and so far it's proven to be highly effective. Even still, I can't help but have some doubts all the way in the back of my mind. What if it doesn't work? Or what if it stops working? What if my body adapts to it and is no longer effective? When I have these doubts, I remind myself to take it one day at a time, and to have a little faith.

Since there is no cure for CML, I will have to take Gleevec everyday for the rest of my life. Within a year or so, I should go into Complete Molecular Response. It is similar to remission, but is not remission. As wonderful as the drugs are at controlling CML, unfortunately they do not cure the disease because they are unable to kill the CML stem cell. If I ever stop taking this medication once I'm in 'remission', it will come back. It may be months or even years before it will happen but it will,  and possibly more aggressive.

So how has this effected me so far?

Within the first weeks of taking this medication, I developed a lump on my leg and rash on my thighs. When I first found the lump on my leg, my first thought was 'tumor'. I immediately called my doctor who examined it and concluded it was on my tendon, and it most likely a side effect of the medicine and just to monitor it. Next, I went to the lake a couple of weekends ago and developed a rash on my thighs. It lasted about 4 days, then went away. We concluded it too was from the medication. The medication makes my skin very sensitive to the sun. So unless I want my body to look like this, then goodbye laying out and tanning bed and hello spray tans.

At one point my lips were a dark tint. My bones and body are constantly achy. I take the medication at night because it makes me nauseous. I wake up nauseous. Every time I eat or drink anything, my stomach cramps. That is if I can find anything to eat that sounds good. I have an appetite but nothing ever sounds appetizing. My weight is staying around 97-99 pounds. Before all of this, I was always round 103-105. If I partake in a physical activity or have a full day, it feels like the life is sucked out of me. I tread water for a few minutes at the lake and that was all she wrote. I felt horrible for the rest of the day. I worked the bar for a few hours last week and by time I got home, I could barely walk to my couch. My body hurt so bad. And for those of you who know me know that I am always on the go so this has been the most frustrating part. I now have to 'take it easy'. I can't go like I used to. I haven't socialized in months. That's because I'm usually so exhausted at the end of the day, have no energy, or don't feel well enough to do anything.

I've been told these things will get better over time. And boy am I looking forward to those days. 

How will this affect me long term?

So this ' miracle drug' that treats cancer isn't cheap, at all. The medication alone costs $76,000 a year. A year. That doesn't include doctor's appointments and testing. Needless to say, good insurance is something I'll always have to have, and medical bills will now become a monthly expense.

Also, If I ever choose to have more kids, it will be a risk to my life. How so? Well Gleevec can cause birth defects so I cannot be on Gleevec if I chose to have more kids. Most doctors do not recommend having children but obviously they can't stop you. I've read dozens of stories of women who stopped taking Gleevec, had a baby, got back on Gleevec, and everything worked out great. But I have also read about women who weren't as lucky and relapsed while pregnant. I've always said I'd be okay if Talon ended up being my only child because he is a huge blessing BUT I also never wanted that option to be hindered, or taken away from me.

And then there is the unknown. This will always be inside of me. It's possible it could relapse or lead to other complications.

But there is some good news!

I saw my oncologist yesterday for a check up to see how things were going so far. Well first, one of the ways they monitor the effectiveness of the treatment is by doing a PCR test. That test tells what percentage of my cells are effective by this mutated chromosome. This test is completed before treatment begins to create a base and continued throughout the treatment to ensure the medication is working. The percentage of my cells effective is only 10%. When most people are diagnosed with CML, their PCR is usually around 80%. This means two things: 1. We caught this very very early. 2. "Remission" should easily take less then a year to achieve. I go back in two months to do another PCR test and that percentage should drop even more. The goal is to get it to 'zero'.

 With that good news came a little bit of bad news. My platelet and white blood count dropped (that's good) but my white blood count has dropped too low. I went from 34,000 to 2,000. 4,500-10,500 is normal. When your white blood count goes this low, it can be dangerous. Your white blood cells fight off infection. Since mine are so low, it will be hard for my body to fight infection right now. Therefore, I can't be around anyone who is sick. If I have to be in tight, closed quarters, with a large crowd, I have to wear a mask. Do I want a cold to turn into pneumonia and put me in the hospital? Of course not. But here comes my vanity again: I went from a lump, to a rash, to a mask. A mask!  Oh but don't you worry. I declined the masks my doctored offered me. That's right, if I'm going to be roaming the streets with a mask on my face, it's going to be a fun mask.

The Ugly Truth

I can honestly say being a mother is the best part of my life. But I can also say there are days when I push aside the glass of wine and go straight for the whole, entire, bottle.

This guy right here, he's my world, he's my life, he holds my heart. He's an amazing little boy. He's cute, smart, funny, and almost always well behaved. Every teacher Talon has had since he started daycare through now has always said how wonderful Talon is. Polite, well behaved, sweet. It makes me so proud and I feel it's a reflection of mine and his dad's parenting.

BUT my sweet little angel is far from perfect. And it's in those moments that I realize how tough single parenting is.

Reality: Shortly after Talon's dad and I ended things, Talon and I went with my family to Michigan for my cousin's wedding. Talon was 2. I still have nightmares from that trip. Talon whined the entire time. The ENTIRE time. He wanted no part of that trip and there was nothing I could do to make him happy, and I was the only parent there to deal with it. I couldn't look over at his dad and say, " Yep, you are dealing with this one." Nope, it was just me. It was at that moment that I got my first taste of single parenting.

For the most part, his dad and I do a great job of parenting together, separately. We pretty much have the same rules for Talon, expectations from Talon, and he has the same routine on school nights at both of our houses. But even still, it's not the same as being together and parenting together, and because of that, it can make parenting challenging.

Because I am a single mom, I have to have a job, a good paying job at that, to be able to provide for Talon and myself and to be able to live this comfortable lifestyle that we do. But, that also means I have to sacrifice some time away from Talon which in return effects Talon. Monday-Friday, a different family member picks Talon up from school for us and keeps him until one of us gets off work. By time I leave work, get back to town, pick him up and get home, we eat, he takes a bath, does homework, and goes to bed. So the only time we get real, quality time together is on the weekends, that is when he's not at his dad's. With that being said, Talon is always here, there, and everywhere. So when I notice a bad habit or a streak of bad behavior, it's hard for me to effectively discipline him and for me to 'teach him his lesson' when the next day, he's going to his grandma's house or cousin's house to play and have fun. It's hard to parent.

Example : This past week has been a prime example. Talon has developed a little temper this past week. When I pick him up from whatever house he is at, he's not ready to go and he shows this to me by throwing a fit, throwing things, and yelling. If you know my kid, you know this is not like him. He really is a sweet and loving kid. Really. I know the main reason this happens is because he is tired from his long day. He is like me and needs sleep. He needs a long nap everyday, and doesn't get that anymore. My family isn't home long enough to let him take a nap after school or if he's with his cousins, that kid isn't going to miss out on time with them by taking a nap. By the end of the day, he's exhausted, and he's a grump, but that's still no excuse for him to act the way he has been. I discipline him, he apologizes, someone else picks him up from school the next day and by time I get him again, it repeats. And it's frustrating. As much as I get on to him, in the back of my mind I know it's my fault too. If I weren't a single parent, I wouldn't have this problem. First, if there were two incomes coming in, I could have a more 'family friendly' job that allowed me to pick him up from school every day. He could have his nap everyday after school. He would have a more structured routine.. Second, he wouldn't be bouncing from house to house so if I was trying to break a bad habit or discipline him, it would be a whole lot easier. There are times I literally want to take a week off from work just to spend that time with him to be able to break whatever bad habit or attitude he has developed.

Parenting can be exhausting, it can be frustrating, and at times I want to pull my hair out. Being a single parent is even harder because you are doing it alone. But being a parent IS also the most incredible, rewarding job in the world. Even on the days when Talon is being the grumpiest little person on the face of this planet, I wouldn't trade those days for any day without him.

Confession: Tough love has been the phrase of the week. I've had to show it way too many times lately. In the past 4 days, Talon has lost his TV privileges, he missed out on a day with his cousin, and I took away his new Wii game that just came in the mail yesterday that he hasn't even got to open yet. I do these things to teach him that there are consequences for his poor choices and know I have to do this but it never gets easier. It literally breaks my heart to see the sadness in his face when I tell him he can't do something. I always want him to be happy. I want the best for him. I want to give him the world. But I also want him to be an appreciative, respectful, sweet little boy that I know he is.