Many of you might not appreciate reading this in a blog post for the first time; for that I apologize, as it’s hard to pick and choose who to call, text, or otherwise before I “tell the world”, so I chose very, very few. It’s hard to write this, despite the hope that surrounds it, because it’s not fun news. This week I received a diagnosis of Chronic Myeloid Leukemia. Even now, writing that, it’s still a bit of a shock to me, but it is just that – one of the four forms of leukemia.
There are a lot of good resources to provide additional information (see bottom of this post), but I’ll sum it up here as well.
Chronic Myeloid Leukemia (CML) is a disease of the blood – technically a cancer – in which the bone marrow makes too many white blood cells. These white blood cells are immature and don’t know how to do their job, but they also don’t die off. Over time they can crowd out good blood cells, and so leads to more advanced forms of CML which can lead to death.
CML is typically directly related to a gene mutation called the Philadelphia Chromosome. In that case, CML is one of the cancers that is best known and understood. It’s not something that can be passed from parent to child, and it is “random” in that there are no known events that cause the mutation to occur.
A little over a decade ago, CML had poor prognosis and typical patient life span was 5 – 6 years after diagnosis. Today there are a number of drugs available that “fight” the disease, and thanks to those, patients can live a normal life span. The drugs are taken orally, daily, until a person is determined to be in remission.
However, unlike other cancers, CML doesn’t stage and remission is determined differently. CML is phased, and remission falls under two different categories. Patients mainly are caught in the earliest phase, chronic, and have a strong survival rate in that phase.
Besides the standard treatments, which are extremely costly, there are also clinical trials occurring to learn more about the disease. Additionally, bone marrow transplant may be considered of a patient is unresponsive to treatment or has multiple relapses.
That’s the skinny – you can read more at the sites provided below.
So… how this relates to me.
Back in February I got a pretty bad cold / sickness from one of the kids while I was away for the weekend, and it was really hard to shake. About two weeks later, I got really sick – not stomach flu – but headaches, body aches, fever that wouldn’t go away, sweats, etc. – and I couldn’t shake it on my own – I was off work almost a week and a half and wasn’t getting better. I went to the doctor multiple times and finally was given a drug that completely knocked me out for five days but also generally knocked out the bug. I was told that I would start really feeling better after three weeks.
Thankfully my doctor asked me to come in for follow up blood tests. In April, my white blood cell count was still high, but the lab attributed it to the illness. However, when I went back in May, my doctor became concerned and referred me to a hematologist at the Rocky Mountain Cancer Center. When I called to make an appointment, the first thing that was told me was, “don’t be scared of the name – it doesn’t mean you have cancer, this is just where hematologists tend to work for blood diseases”. So it was all good.
About three weeks ago, I went in and met Dr. B, and he decided to draw a number of vials, but expected that he would have to throw out a number of them, because he didn’t expect to find anything in-house. He stated that depending on his findings, he would ship those additional vials off to the lab, but he didn’t think my white blood cell count was high enough to attribute to anything. However, by the end of the day, he called to tell me that he saw pre-cursors for leukemia and would be sending the additional vials for more testing. He was shocked. So was I.
Last Wednesday, when I was flying home from Boston, Dr. B called to tell me that he needed to speak to me right away. I was able to talk to him Thursday morning, and he said that the further tests showed that I had CML and that I would need a bone marrow biopsy. We scheduled it for yesterday. Now, at the time, because of the reading I had done, I figured it didn’t really mean I had CML – that the biopsy would confirm that – however, yesterday, I learned different.
When I first arrived yesterday for my bone marrow biopsy, Dr. B and I met and he explained that I do in fact, have CML, and we discussed a number of treatment options. My test results showed that 80% of my white blood cells that were tested (and they tested 200) showed that they were a.) leukemic and b.) had the chromosomal defect. That made it very certain.
I go back in two weeks to decide on a treatment option for sure. After that discussion, I had my biopsy performed, which, while it is not a walk in the park, definitely was not hard to get through (which is good, because I’ll be having a number of THOSE in the coming years). The biopsy will show us which phase I’m in, but we aren’t expecting anything more advanced than chronic. And so, despite the shock of having leukemia, the prognosis is really good, and that’s positive.
I have a lot of reading to do; Adam and I have a lot of discussing to do. The 28th will be a big day because it’s the day I’ll determine my first steps in treatment, and every treatment option has side effects associated with it. And, on top of that, we’re entering a new phase in our lives where suddenly plans have been upheaved and we need to sit and refigure things going forward.
I am still really tired, still have night sweats, etc., but generally all other symptoms had gone away. I’ll have new side effects when I start the drugs, and I will be monitoring how that goes to determine if it’s the right treatment (besides the blood tests and biopsy results). I will still work full time, still do things with my family, etc. We’ll have to see how it goes and just take it a day at a time.
There are a lot of things I don’t know. When I was at the clinic yesterday, I asked the few questions I had, but now I have lots more. So, I will say this – please feel free to ask questions, talk to me about this, etc., because it will only help me figure out what I do and don’t know and what I need to ask when I go back in two weeks.
Things I do know – 1.) I shouldn’t have more kids on these drugs. It’s not known how the drugs affect in utero babies, and yet, stopping the drugs to have a baby isn’t a good idea either. I realize we have three beautiful girls and I am very thankful for that – but I will say this – there is a difference between deciding you don’t want anymore kids on your own and being told that you shouldn’t. 2.) I will most likely be on treatments for a very long time. It could be a while before I’d be in the correct type of remission. CML isn’t something that ever really goes away. It’ll be something we’ll have to monitor over time. 3.) The prognosis is great and we’re not worried about whether I’ll live a long life or not. 4.) The drugs are really expensive. This is part of the reason why I’m considering a trial. The drugs on average are $120,000 a year without insurance, and while I’m VERY thankful we have insurance, we still have a 20% copay. We’ll be weighing the pros and cons to make sure we make the best decisions for my health.
In advance, thank you for the love, support, and care you offer. Right now we don’t really “need” anything – we mostly need to make a few decisions. After I go back in a couple of weeks from now, I’ll be starting treatment, and that’s when things might start to change a bit and we’ll need a bit more from a physical perspective. I’ll be updating the blog and FB regularly – if you don’t already keep me in a blog feed and want to make sure you get updates, you can subscribe or follow me by going to the main blog page, and you’ll receive an email when a new blog update comes out.
Long road ahead… thanks for the love!
Erin (and the family)