No Sugar Coating Here

I’ve had so much on my mind here lately about life. And I’ve had so many people ask me about it, particularly my health, especially some other ladies with CML who are wanting to have more children and have been following my journey. Well, here it is, my life as of late.

Taylor Grace is almost 6 months old and it’s been an amazing, emotional, exhausting, but so totally worth it 6 months. She was well worth the hyperemesis and risk involved by having her. She’s been a blessing to all of our lives and I’m so thankful for her. I mean seriously, how could you ever be in a bad mood when you wake up to this (and her big brother) every morning? Our days are filled with even more joy than before. I love my babes.

But if I’m being completely honest, and that’s what my blog is all about, then you should know that life has never been tougher.

I started my treatment again a few weeks after having Taylor and in the beginning, the side effects weren’t so bad. I was hopeful that was a sign that it wouldn’t be so bad this time but unfortunately that hasn’t been the case. The effects have gotten worse with time, arguably worse than they were before I stopped treatment to have Taylor.

Most days are a struggle to get through. The extreme fatigue has never been worse. And I’m not talking “new mom” tiredness, though I know that definitely plays a role, and also having low blood counts plays a role, but until you have a chronic condition that comes with extreme fatigue, it’s hard to explain what it feels like. It’s like a fog that comes over you. When it hits you, you have no option but to lay down and rest until it passes. There is no fighting through it, you can’t focus or concentrate when it hits. You are at the mercy of it. It literally feels like the life gets sucked out of you. And it is so, so frustrating. It’s hard to get through some work days. And when I get home, it’s hard to do my domestic work, such as cooking, cleaning, taking Talon to/from practice and taking care of Taylor. There are days I come home from work and go straight to bed. There are days I want to skip dinner but not only do I have a kiddo to feed, but I also have to make myself eat dinner so I have a full enough stomach to take my medicine on, otherwise I’ll get sick. I can’t say I didn’t know this was a likely possibility. This was how my life was before having Taylor, except now it’s just worse, and unrealistically I had hoped it would get easier. Luckily I have an amazing husband who steps in and does so much for all of us, but it’s still so frustrating. As a mother, it’s hard to accept that you can never be ‘super mom’. As much as I want to say “I’ve got this”, I know I don’t on my own. I NEED TJ, I need his support, physically and emotionally.

Because I’m limited on how much energy I know I’ll have for the day, I focus it on the things I know HAVE to be done then I’m spent, I’m done, stick a fork in me. I miss out on moments with my kiddos and my husband because there are times I just don’t have the energy to get off the couch once I get home from work. They are the ones who get the short end of the stick. I’m not saying every day is like this, but a lot of them are.

A lot of days my goal is to just get through the day, and that’s such a frustrating way to live.

But then I come home to these sweet, smiling faces and it forces me to let go of the frustration because if feeling this way is what it takes to spend my days with these guys, I’ll take it.

 But it has made me realize that even though I’d love to continue to grow our family, that’s likely not in the cards for us. First there is the fact that there is risk involved when having children since I have to stop treatment while pregnant. There was a moment when I was pregnant with Taylor and my leukemia began progressing that really worried me. Not for the sake of me but for the sake of Talon.” Was wanting another child worth Talon having to grow up without having a mother? Shouldn’t he be enough?” He was more than enough and in that moment I felt so selfish. But I’m so happy we did it because we now have a Taylor and she is pretty amazing. But to risk both of them having to grow up without a mother, I can’t do it. And even if we decided to, and we were able to have another little cutie, then there is the fact that I would likely be even more tired, and exhausted because having two little ones is obviously more work than one, and I would continue to feel guilty and saddened about the fact that I would be missing out on moments of not one, not two, but three kiddos. They deserve a mother who can give their all to them and I can’t keep pushing myself or they will be the ones who lose. And while my husband has been super dad and super husband, I can’t keep pushing him either. I will say having Taylor has made our relationship so much stronger. He’s a great father to both of our kiddos, he’s really stepped up to the plate, and it has changed him in such a way that has made me fall even deeper in love with him. I’ve loved being on this journey with him, and the last thing I want to do it push him to take on more than he (or anyone) could handle. But all of this, I’m okay with. We have two healthy and beautiful kiddos, he picks up where I slack, he still loves me unconditionally, and I get to spend all of my days with all of them. Though it’s not always how I want to spend them, I really couldn’t ask for anything more. Actually if I could ask for something more, it would be to stop getting frustrated and accept this is my life, this is my health, and though it’s not what it was, I’m still here and still get to enjoy a pretty amazing life with people who fill my heart more than I could have ever hoped for. 

I will gladly accept prayers for that ask. :)

For a REAL health update---

For my CML people—My PCR climbed in the 20%s while pregnant but held steady and no sign of blast cells. 2 months after having Taylor and starting treatment, it went down to 4%. 2 months after that, it went to .34%. I go in for my next round of testing next week and we will see where it is then.

For all my other friends, PCR is essentially the measure of how many of your blood cells are leukemic. If treatment is working like it should, it should be zero. While being at zero is more unlikely than likely, it is possible. Regardless, being under .1% is where you want to be, though I’m not there yet, I hope these next rounds of tests will say otherwise. :) It won’t have any effect on how I feel but does give a peace of mind of the likelihood of the disease progressing.