You’d think after three months, I’d be used to this cancer BS by now. It’s still a difficult thing to accept.
This is my life.
I know I’ve said this time and time again, but I never thought “cancer” would ever be a word used to describe some portion of my life.
I never dreamed I’d be bald and hooked up to a machine 24/7 that I have tote everywhere like an unwanted ball and chain–though I suppose no one wants a ball and chain.
I just don’t get how I can be so unlucky. It’s like I won the unhealthy lottery. To have been 29 weeks pregnant and find out I have acute myeloid leukemia and I have to have my baby 10 weeks early was a lot to take on. I just couldn’t understand why I had to go through so much at once.
I mean it’s one thing to have a premature baby in the NICU.
Then to add having cancer on top of that.
And, having a three year old at home who is going to be tossed around from house to house til we get home to some normalcy again, just seems so unfair.
All of it is unfair.
It’s not, it’s not, it’s not! (I say that like a little six-year-old girl throwing her fists toward the ground and stomping her foot.)
There are days through this that I feel strong, and I don’t care about my bald head, then I look a photos of me, pre-cancer and with hair, and I wish I could feel like that girl again–healthy, pretty, happy-ish (I was happy, but I’m a moody bitch sometimes).
I know I’ll never feel the same.
Cancer has changed me. It’s changed who I am.
Everything that goes on in my life revolves around cancer, and that in itself is exhausting.
No one wants to talk “cancer talk” all the time; it’s incredibly depressing.
But I suppose what I’m about to tell you, people would want to know… and it may be why you chose to read this post.
Shit’s about to get real.
Wow–those words just came out of my mouth–or more liked typed on my computer.
I’m honestly not sure if I’m even supposed to know that yet, but they narrowed it down to a donor.
The donor is on hold waiting for us to schedule a transplant date.
Of course, it’s always a possibility for the donor to back out or change their mind.
Let’s pray they don’t.
But if this person does, they have two more people they were interested in.
This person is a 100% full match, apparently if I’m using an unrelated donor I have to have a full match, which I didn’t know.
It’s kind of crazy knowing there is someone out there that somehow genetically matches me inside and I don’t even know this person.
It’s definitely exciting though. I wonder who this person is? Where do they live? What do they do for fun? Wonder what they look like? I just want to know all I can about them.
I’m not real surprised they found a match, because they told me I would most definitely find one due to my ethnicity–which is a nice way of saying it’s because I’m white.
Since announcing I will have a stem cell transplant, I’ve received a lot of messages and comments asking how people can get tested or how they can help.
Now I may have found my match, so you may not be able to help me, but I encourage everyone to visit
bethematch.org to learn more about how you can join the international registry.
From what I understand, you sign up and they send you a kit to do a quick, painless mouth swab. You mail it back to the organization and you’re in the system. It’s as easy as that.
And why not join the registry? You could have the chance to save someone’s life.
From children to adults in their fifties and more, you might have the goods to help someone live longer. That’s the most amazing thing in the world–trying to save someone’s life.
I guess if I ever got a phone call saying I could save someone’s life and donate my stem cells, I’d have to do it. There is a complete stranger out there and they need my help. I’m the person who can help them the way no way anyone else can. And I’d hope if one of my family members were going through this, that a donor would want to step up and do the same for me and mine.
This is pretty epic news because the odds were against me staying in remission without a transplant. Yes, I said remission; I’m considered in remission currently.
That doesn’t mean I’m cured, so don’t get too excited just yet.
The chances of me going into long-term remission post-stem-cell-transplant are 7 out of 10 and even in more recent studies show 9 out of 10, which is great, but a long road still lies ahead.
If I was unable to have a transplant, especially with my pesky FLT3 mutation, the odds of me being in long-term remission with chemo only would be 2 out of 10.
So, it’s imperative that I have this transplant.
I know this is going to suck.
I know it’s not going to be fun, but I’m going to do this and get better.
This isn’t going to be IT for me.
AML will not rip me away from my family.
So screw you AML, I’m not going anywhere.
Here’s The Plan
I should start the transplant in a month or so (probably late March or early April).
The transplant includes another round of chemo–a longer and the most intense/harshest chemo I’ll receive–to wipe out my bone marrow and immune system. They will infuse the donor’s stem cells into my body and I’ll essentially develop their healthy immune system that spits out no leukemia cells.
I’m still learning the details but they did all kinds of tests while I was in the hospital to have me ready for the transplant when it’s time.
Apparently I will have some other device embedded into the skin in my chest (kind of like a port but different I guess) to infuse the stem cells through. I thought they’d be doing that in my port, but clearly I’m not educated enough on this transplant stuff just yet.
I’m supposed to take a class to learn more about what will happen when it’s time. I need a class. All of this stuff is very confusing.
It’s crazy though. I’ve thought about the transplant, but I didn’t want to think too much about it because I’d get so upset thinking about being away from my kids for a long time.
Three weeks is just way too long. And there is no telling if I will be there longer…
I hate that.
I could barely sleep the first night I was in the hospital because I missed them so bad.
I’ve heard people say that they will make exceptions for me. I just hope they keep their word.
My boys are growing and changing so fast, and like Steven Tyler, “I don’t want to miss a thing.” I know what you’re thinking… “corny line, Cass.” I know I literally just re-read that and cringed.
But “I don’t want to miss a thing.”
Ugh. Stop it, Cass.
I honestly dread how much pressure will be put on my family and friends to help us out while I’m in the hospital.
I’m afraid of how sick I’ll get.
I’m afraid of the GVHD crap that could make me really ill.
I’m scared of a lot of things.
But today, I’m going to focus on the positive.
The transplant is in our future.
A donor has been selected.
Things are looking up.
I will get better; I just have to.
In the mean time, I guess we will just wait for a transplant date.
I’ll be twiddling my thumbs til then waiting on those stem cells to arrive… HA! Who am I kidding? I got a toddler and a newborn, my hands are full.
Side note: wouldn’t it be awesome if I could get infused like Superman’s stem cells? Or maybe Buffy’s? Hmm… how amazing would it be if this person were a celebrity? That’d be cool. Like if I got Matthew Mcconaughey’s, I’d be saying, “Alright, alright, alright. I’m just gonna keep livin’ man. J-K-L.”
LOL. I’m such a nerd. I totally said that out loud in my “Mcconaughey voice” as I typed.
Ehh… honestly I’m cool with getting stem cells from anyone who is HEALTHY.
But Matthew, if it’s you, “it’d be a lot cooler [if it was].”
Dazed and Kinda Confused (by the ending of my post),