My Pregnancy Journey: The Uncut Version

So two weeks ago, I posted this on Facebook---

While I was very excited that I was FINALLY feeling some relief from the horrible pregnancy plague, also known as Hyperemesis, a big part of me was hesitant to be excited. That’s because I knew it was very likely that I was getting excited too soon, which turned out to be true. 

You see, the week prior, I went in for my monthly testing to check the status of my leukemia. They have to send this test off and it usually takes about 1-2 weeks before you get the results back.  I was expecting those results back any day and had a feeling that I wasn’t going to like the results. Not to get into too much detail, but in additional to the test that they have to send off, there is a simple blood test that they also do locally (where you know the results within hours) that can show red flags. I always check those results as soon as they are available and for the first time since being diagnosed, it showed those red flags. So I knew something was up, I was just left to wait for the real, definitive results.

If you follow my blog, then you know that around the time I found out I was pregnant (and after two months of stopping treatment), my leukemia showed signs of progressing. It went from half a percent to 2%. Not a HUGE jump, but still a sign of progression. We knew this was likely to happen, just so long as it happened slowly. That’s the best thing about this type of cancer—it’s slow growing. Many people have it for months or even years before its detected. That’s why some women choose to stop treatment to have children because the likelihood of it progressing to a very serious level within 9-12 months is slim.

The very next day after posting about how excited I was to FINALLY be feeling better and more like a ‘normal’ pregnant person, I got a call from my oncologist who told me what I didn’t want to hear. “Your numbers took a big jump. I’m sending you to the head of hematology at the UK Markey Cancer Center to get his opinion on where we go from here.” I went from .5%, to 2% in 2 months, to 15% in just 2 more months. That’s a very BIG jump very QUICK.

I was headed to a meeting for work when I got this call and after hanging up, I couldn’t contain my emotions and began to cry. Luckily I had another co-worker going to this meeting who was able to cover it for me so I changed my route and ended up in my driveway where I continued to cry, and cry. The cry wasn’t out of fear or worry, it was out of frustration. I knew what this meant. It meant that just as I was finally beginning to feel better it would be short lived because I would soon have to start treatment, which would make me feel sick again. I just wanted to be normal, feel normal, be able to work like normal, be able to take care of my home like normal, be able to spend time with my family like normal.

And to be completely honest, for a brief moment, my tears were for fear. Not for myself, but for my 8 year old sweet baby boy, Talon. We knew there was risk involved and challenges we'd have to go through for me to have more children, but it was a risk we felt confident and hopeful about. But what if we made the wrong choice? If something were to happen to me, I know it would be hard but I know my husband would eventually be okay, and my family would eventually be okay, but what about Talon? How selfish of me to have wanted another child so badly that it was worth risking him having to grow up without a mother. That is my biggest fear. And for a brief moment, that fear crossed my mind.

But then I pulled myself together. We knew it was likely that my numbers would progress. We hoped it would happen slowly to where I would never need treatment during pregnancy but we knew that was a possibility. And we knew if that were to happen, there is a couple of different options of treatment I could take that would be safe for the baby. We knew that if that point came, my oncologist would send me to the UK Markey Cancer Center to create a plan and go from there. So while all of this was definitely not wanted, I can’t say it was a surprise. We knew these were all possibilities and risks involved and the risks that we accepted when starting this journey. And this is where we are.

Before starting this journey, I reached out to other ladies in one of my CML support groups who have had or were also trying to have children. I remembered one in particular who actually had this very similar situation happen to her so I immediately reached out to her to ask how she was doing, how the baby was doing, and what actions she was taking to be sure she is able to safely deliver a healthy baby. Her response gave me so much hope and a sense of peace. She had started the treatment, which posed some challenges, but her and baby were doing well. She was having tests and doctors’ appointments about every week. She had found ways to cope with side effects of the treatment and had still been able to work. It was exactly what I needed to hear.

A week and a half later, my mother, husband and I traveled to Lexington to meet with this new doctor and learn what’s next. Having done so much research prior, I knew what was likely to happen next. I knew I would have to begin treatment, I knew I would have to deal with some bad side effects for the remainder of the pregnancy, but I knew it’s what had to be done and I was ready for it.

But what I didn’t anticipate was for this doctor to offer me something that I didn’t expect— time. While there is definitely reason to be concerned, we aren’t at ‘code red’, yet. While my numbers did take a big jump, I’m still in phase 1. There are 3 phases to CML. Phase one is chronic, phase two is accelerated, phase three is blast, which turns into a completely different type of cancer that becomes very aggressive and hard to treat. The goal is to keep my CML from going to phase 3. My doctor’s recommendation was so long as I’m in phase 1, do nothing except continue to test and monitor on a regular basis. Once I enter into phase 2 (which is very likely to happen at some point during this pregnancy), then I will begin treatment. He reassured me that the likelihood of this progressing to the blast phase during my pregnancy without treatment at all was slim, but I’ll start treatment before it gets to that point. This was like music to my ears. So at this point in time, we do nothing, just test and wait. So while I expected to leave that doctors appointment with a hand full of syringes for the injections I’d have to start giving myself each night, I instead left empty handed but also with a new sense of relief and hope.

So what does this all mean-- It means that it is still very likely that I’ll have to start treatment at some point during this pregnancy, but not today. And THAT makes me soooo excited because I have more time to enjoy being a somewhat normal pregnant person. Of course that could change at any moment, but I’m prepared for that. I’ll get my latest test results back later this week and that may show I need to start treatment. It’s likely that WON'T be the case and I’ll test again in 4-6 weeks and wait to see what those test results show, so on and so forth. So in my mind, I likely have a good 1-2 months (maybe even longer) before I’ll have to begin treatment. The longer I can hold off, the better. What is also likely is I’ll have this baby earlier than my due date. I’ll likely be induced as soon as it’s safe for the baby. That’s because even though the treatment I’ll be taking while pregnant is deemed safe for the baby, it’s not the most effective treatment for CML. It’s actually not a treatment, it’s an immunotherapy called Interferon. Typical treatment for CML is a targeted therapy in the form of a pill (it’s like chemo, but it only kills the ‘bad’ cells where chemo kills all cells). This can cause birth defects so it’s not recommended to take while pregnant, which is obviously why I haven’t been taking it since we decided to start this journey. But the immunotherapy is safe for the baby. It’s essentially a therapy that boosts your immune system so you can naturally fight off cancers. The goal of this treatment isn’t to actually treat the leukemia, just stop it from progressing until I can safely begin normal treatment again, which can happen after I have the baby.

While all of this might sound crazy and overwhelming and you wonder why anyone would put themselves through this, I am actually excited (again), hopeful, and at peace with where we are at this point in time. Aside from that one moment that one day a couple weeks ago, I’m not worried at all. Is it a false sense of hope? Maybe. But when I was diagnosed with leukemia three years ago, I decided I was going to live my life as ‘normal’ as possible, even though that meant facing a lot of challenges, and even though it would probably be anything but easy. And this is me doing just that. And if I know one thing, it’s that the only thing worrying will do is keep you from enjoying life, and ain’t nobody got time for that. <3

Confession:

I was really hesitant about writing this blog post. I definitely don’t want pity or for people to worry for me because this is a choice we made and risks we accepted. And to be honest, the less I have to think about these challenges, the easier. It’s just easier when people are asking how things are going, for me to answer “good” than go into all of these complicated details.  It’s just more fun to pretend I’m a ‘normal’ person going through the joys of pregnancy. It’s more fun to talk about how I now can drink unsweet tea (yay caffeine) and how we can’t wait to find out if we are having a boy or girl so we can begin shopping, or talk about how funny it is going to be to see TJ holding a baby, and just enjoy watching my belly get bigger and bigger as this little peanut continues to grow, than it is to talk about obstacles and challenges we have to face. But because there isn’t a What To Expect When You Have CML and Are Expecting manual, I made a vow to document this entire process from start to finish for other ladies who are in my shoes and who have CML and are thinking about having children one day. Good, bad, or otherwise, this is a part of my pregnancy journey. 

You can follow my entire journey here.