It has taken me longer to write this than I expected. Why, I’m not entirely sure, but here we are. On March 18th I was very suddenly and unexpectedly (well, who expects it?) diagnosed with leukemia. Yep. Here’s the part where everyone asks if I had any idea? How did I get diagnosed?
No, I didn’t know. But I did know something wasn’t right. Over the last few months I felt tired. I mean, we all feel tired because, children. But I felt like I was failing. Like no matter what, most of the time I couldn’t muster up enough energy to get through the day and make it until bedtime. I felt like a bad mom and I took that to heart. I felt like a bad businesswoman as the energy I have relied on for years to always be creative, excited and moving forward was snuffed out.
Maybe it’s your diet, Craig suggested. I tried making myself eggs in the morning and taking more time to pay attention to what I was eating. Deep down inside I thought it had to be something more. Maybe I was depressed? Over the last couple of years I’ve watched so many blogger friends come out and talk about the fact that they suffer from depression. Struggling to get out of bed. Struggling to get through the day. Feeling like they are never enough. And physical pain too. A couple of weeks before I was diagnosed my neck started hurting. It would come and go but neck pain and headaches started to become part of my daily life. It’s depression I thought to myself. I’ve seen the commercials. Depression hurts.
But something in the back of my mind said you need to go get someone to test your blood and find out what the heck is going on. Maybe it’s something else. And thank goodness I did. On March 17th after watching Kayla’s school performance and kissing Craig goodbye as he hopped on a plane to Vegas to meet up with some friends, I dared to take an hour for myself and head to urgent care hoping they’d run some tests. I told the doctor about the headaches and lack of energy but emphasized the fact that I just hadn’t felt like myself. They took blood and told me they probably wouldn’t have results for a few days.
The next morning around 8am I got a call from urgent care telling me they had the results and asking me to come in. Not good I said to myself. No one needs to see you to tell you that you might be anemic. I knew the second that the doctor snuggled up to me and took my hand that something was horribly wrong. She showed me the lab results which had a white blood cell count of 68,000 (normal is around 4,000-10,000) and pointed out a couple of other areas of worry including that apparently my body was spitting out lots of immature white blood cells. Which she noted was usually indicative of cancer. I needed to go to the emergency room, today she said.
This is the part where I’m supposed to stop hearing what she is saying, the room is supposed to start spinning and I go into shock. But I didn’t. It wasn’t like that. I took it in and thought to myself well, at least the last few months and especially weeks now make more sense. As odd as it sounds and as much as no one wants to hear the word cancer I felt the slightest bit of relief that this wasn’t all in my head and in fact how I was feeling had a true physical catalyst. An explanation.
I got into my car and called Craig who was supposed to be on his 30 hour boys trip. It’s not good I told him. It’s really not good, and through my first tears, explained my two minute conversation with the urgent care doctor. He went straight to the airport to get on the next flight home. I somehow drove the very short drive home, extra paranoid about being aware given what was going on. When I got home I went to go inside but I couldn’t. It was my mother in law, Kayla and Blake waiting inside and honestly, I couldn’t face looking at my kids just yet. Thinking about how their lives were about to be changed, knowing all too well what this might mean.
So I went to my neighbor’s house (the ones who are like another set of parents) and had a good cry. Then I did what might have been the smartest thing I’ve done in a while. I called our pediatrician. He is unbelievably modest but has been one of the top doctors in San Diego for a long time. Two year ago we discovered that we’ve lived two streets away for over a decade and never knew it. So we’re also neighbors and have been granted the privilege of having his private number which we try not to abuse. I called him and told him what was happening and that I was told to go to the ER but there are so many here in San Diego that I wasn’t sure which one I should go to. Knowing in the back of my head that whichever hospital I walked in the doors of I was likely to be stuck there.
After having me read him several of the numbers from the lab results he said “You need to go to UCSD. They have the best technology and treatment available in San Diego. That’s where I would go.” Which is precisely what I always ask and always want to hear from a doctor. So we did. Craig came home within an hour or two and off to UCSD we went. I didn’t tell him but I had a bag with some basics like a phone charger and pajamas in it because I knew in my heart I wasn’t coming home that night.
In the ER they re-ran those same blood tests, plus a few more. I had a CT scan of my head because of the headaches and within about three hours there was a hematologist and oncologist sitting in front of me confirming that yes, I had leukemia and while it was still slightly up in the air until they had one more test result that everything was pointing to AML. Acute myeloid leukemia. The one you don’t want.
They didn’t say that. I did. Because I’m a realist and I always have been. And because it’s true. If you have to wind up with leukemia, AML is the red headed step child of the leukemia family that you don’t want. The overall survival rates are scary to say the least and I’ve tried not to dwell on them, but I’ve always been a give me all the facts and problems and let me figure out how to solve what I can kind of person.
However if you dig deeper and pick things apart by age (most AML patients are older men, smokers, etc.) and then go even deeper, like bone marrow deep you’ll find that different genetic markers and mutations come in to play that greatly affect prognosis. So far, I’ve been lucky. My first bone marrow biopsy has shown a favorable combination of factors – more on that in a another post. Now, we wait and hope.
If you’re on Instagram, come say hi! I’m @hellosplendidblog over there. It’s my favorite social platform to get to chat with all of you and where I tend to share more about what’s happening in my life in real time.