So maybe I wasn’t completely of sound mind when I stopped by the tattoo shop after receiving the CML diagnosis yesterday, but I do love my tattoo, and it’s one I’ve been wanting for quite some time. Each of the electrons represents each of my girls.
Saturday, June 15, 2013
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)
Monday, June 3, 2013
We held a First Birthday Party for Anna on May 11 at our house – it was loosely an Alice in Wonderland Party. Friends from the area joined us to celebrate our little one-year-old!
Using Grandma Muriel’s punch bowl and glasses for our guests.
Alice in Wonderland hanging cards in the kitchen.
Anna’s First Birthday cake, courtesy of a wonderful French bakery a few miles form our house – vanilla and raspberry!
Petit fours from the same bakery – watch out, as we found out, the green ones have nuts in them. And the swans – they were a little bit of heaven!
Anna ready for her guests to arrive and for the party to begin!
The birthday girl!!!
Our friends, Peter & Rebecca.
Julia enjoying the party favors.
The candle is lit and we’re ready to sing Happy Birthday!
Happy Birthday, dear Anna!
Blow out your candle!
Anna touched the cake before we could take it away from her – she quickly learned that she LOVES cake as much as her mama does!
What? No more cake for me???
All in all, we had a great first birthday party for our darling! A big thanks to everyone who came and sent presents! (Don’t worry, your thank you cards will eventually be in the mail.)
Sunday, June 2, 2013
So… Adam wasn’t too excited that I let Julia use the “Good Camera” to take pictures one afternoon – but she sure enjoyed it AND she did keep the strap around her neck. These are a few pictures from her first venture into picture taking. Someone needs a camera for her birthday!
Saturday, June 1, 2013
Despite the fact that we didn’t get our good snow storms this year until April, most of our tulips managed to survive and make an appearance in May… about three weeks later than last year.
I’m excited that my rose bushes popped back as well – after getting chopped back this spring, they are going crazy branching out and getting ready to show their pretty buds. Yay!
Friday, May 31, 2013
Sure, these two fight and slap and pinch and yell (at each other), but you couldn’t find two closer sisters. Here Adam captured their fancy head gear that they picked out for themselves on the way to school one morning. It’s beautiful to watch them play together… laugh together… love together… it will be so fun to watch Anna grow into that sisterhood with Julia and Raven as well.
(ps. I canNOT get over Raven’s desire to wear hairbands on her head like a hippy. I LOVE it. LOVE. It.)
Wednesday, May 15, 2013
As I’m writing this, I’m watching the clock tick down and midnight arrive and the arrival of my youngest child’s first birthday. Happy Birthday, Anna!
This Friday is Anna’s one-year checkup, at which time I’ll delight with details of her weight and height. However, in the meantime, here’s a little bit about her:
- A mama’s girl, through and through; Anna doesn’t exhibit “Stranger Danger” – she simply doesn’t like people very much. Still. So in that way, it’s “Everyone Danger”.
- Anna is crawling, and on Mother’s Day, she crawled up the stairs for the very first time (in a fit of rage, to find her mama, who left her in the basement to go help dad!). Anna doesn’t like to put much weight on her feet yet, but she’s getting there, and I’m sure we’ll have a walker in the next few months.
- Anna has TWELVE teeth! She has all of her tops and bottoms and four molars. She didn’t really experience much difficulty with teething; I remember a few restless nights, but generally it was okay. Or else I forgot. Which I probably forgot.
- Anna is observant. Yet, she isn’t quiet by any stretch of the imagination, and makes her feelings known. Loudly. Like, screeching at the top of her lungs.
- Anna likes to dance. She can wiggle her little body like crazy. In that way, she and her sisters complement each other well.
- Anna loves bananas, like her sister Raven. She eats well and has blown past the “weight gain” issue from month six. No utensils yet. Loves to throw food on the floor when she’s done. Especially if she thinks you are playing a game with her when you pick it back up again.
- Nicknames include: Anna Banana (from birth – maybe Day 1?), Booga Booga (maybe around 6 months), and Bubba (my endearment for her in the last month). She answers to all three.
- Words: “Uh oh”, and occasionally, “Mama” means “Mama”. But also means, “WHY DID YOU SIT ME ON THE FLOOR AGAIN DON’T YOU KNOW I WANT YOU TO HOLD ME ALL THE TIME WHAT IS WRONG WITH YOU WOMAN???”
- Anna loves to be outdoors. When she is outdoors, she loves to eat flowers, grass, dirt, etc.
- Anna is terrified (what’s even more than terrified?) of dogs. And cats. And cows. And generally, animal sounds (my goodness, do not pretend to be a dog around her, unless you are the size of her sisters). Don’t show her YouTube videos of cows. They are okay for a few minutes, and then she realizes that – OH MY GOSH THAT IS A LIVE ANIMAL – and she freaks. Quite hilarious. She doesn’t seem to mind birds and fish.
- She doesn’t like being smothered by anyone. She loves to be held. However, she doesn’t like to be held down or “captured”. She especially does not like this when her sisters do it to her.
- Anna loves books but doesn’t love being read to. She would rather go through them on her own.
- Anna doesn’t need to be held to drink a bottle or rocked to sleep. But everyone once in a while, mommy gets that opportunity and she holds those last few shreds of quiet time and togetherness in her heart.
Happy birthday! We love you, Anna!