I'm a Fncking Unicorn!

 

So today I found out I'm a unicorn...

The last biopsy I did on 1/17/2023 showed that there was 30% of Leukemia in my marrow. When we came to Houston I did another biopsy for their own tests on 1/23/23 (yeah, the totally awake, just numbed one), and those results showed that there is .05% of Leukemia in my marrow.

That means I'm in remission again, with trace amounts of Leukemia.

The good news is that I'm in remission, the bad news is that there is still trace amounts. What that means is that there is currently no active Leukemia running around in my marrow nor bloodstream, but because there is still that tiny little bit hanging around, I do have another chance to relapse. It's possible that it may not happen even with the trace amount, but more likely it would happen. So the plan is ideally to kill the last bit and live happily ever after.

The part that freaks me out a little is that I'm a unicorn. A unique case for this. Here is why: 1. I relapsed in such a short amount of time; 2. I am young; 3. My body responded extremely well to the medications that I was given in response to my relapse, which brought me down to the .05%.

Now, according to the doctor a relapse so close a transplant doesn't happen often, but it sometimes does. And then the cocktail that they give me, though a potent mixture, doesn't usually work so effectively on relapse patients. And then on top of all of this is my age. Should any of these things happen, it usually happens with patients twice my age (65 years plus). So I have now puzzled the world's best cancer doctors!

I'm not sure if that's something that I am more proud of or scared of...

I have often found comfort in knowing that I'm NOT the fncking unicorn, that my situation is NOT the path less traveled. So now I have to find comfort in something else, like the fact that because of my age they still have options, or the fact that there are options at all.

The point is that even though I'm a unicorn it's not the end. I'm not that unicorn you see in Harry Potter getting it's blood drank by Voldemort. Which now I find weirdly symbolic...cancer = Voldemort,  Alex = unicorn. Maybe not in that particular situation, but you know what I'm getting at!

Anyway...my Leukemia doctor is hopeful and I have fight! I have been prescribed a cocktail of pills and chemo and will be starting that in the near future. Then we all know what the hope is then.

Here I am! a FnCKING FIGHTING UNICORN!!! (WEEEEE SAAAAAAAW, WEEEEE SAAAAAAAW => my unicorn sound or whatever) 

Everything is Bigger Y'all

We're in Texas! Let me fill you in on how we got here...

At my last appointment with my initial doctors on 1/19/2023 they told me that my Leukemia came back, and I had 30% of Leukemia in my marrow. That was on a Thursday. On Saturday we packed up, dropped our little one off to his grandparents and drove 4 states. We were in Houston on Sunday afternoon for our Monday appointment.

I'd like to take a quick second here and just give a shout out to Tesla...we got the month trial of auto driving and it was quite helpful for us (even though it was just my husband driving).

We've been here doing tests after tests after tests everyday in the hospital. One of which was a bone marrow biopsy where I was not put under anesthesia, nor sedated! My first introduction to a biopsy I was put under. The one after that they said they weren't going to put me under, but sedate me. And now this one had neither, but just to local numbing shot. It seems that my biopsies are just getting progressively worse...or badass I'd like to call it. 😎

Anyway...here we are in TX where we are still trying to think of we are going to be here longer than a week or so. Our return date keeps getting pushed back a day at a time and I'm afraid it will be us just staying here for a few months. It wouldn't be so bad if I got to clean my house some and didn't leave in a matter of a day.

The hospital is definitely different. It's huuuuge! The medical complex could be the size of downtown Orlando easily, and there are much more people here...but none of this should surprise me since it's MD Anderson, the best in the world! But it still does.

Sitting in the waiting room is interesting. I see lots of people with Leukemia like me (duh), but when you listen to them talk about their stories you'll find that some of them don't have just Leukemia. But maybe one or two other types of cancer. And it makes me feel both comforted and out of place.

I keep thinking "Well, ok. All these people have so many issues and I'm here with my one type. I gotta be one of the easier cases so I'll definitely be ok". And on the other hand I feel like I don't need to be here because it seems like I'm an easy case. That said cancer is cancer...everyone should be able to get the best care possible.

This one older guy was listing off all the things wrong with him outside of cancer...replaced hip, respiratory issues, some weird surgeries I've never heard of, and catching COVID. At the end of the list the lady across from me whispered to her husband, "geez he's on really bad shape"

I laughed and I thought to myself, "Lady look around...were in a cancer center... we're all in bad shape" but seriously that man's list was longer than Rapunzel's hair (I don't know any long thing analogies so this is the best you're gonna get...🤷‍♀️).

All of these people both listen, speaking and commenting are super nice...and happy for that matter. Not happy about the situation, of course, but happy people. I've found that once you've been diagnosed with cancer, you're officially enrolled in a mind game. A mind game of how to balance your positivity and seriousness.

So I'm still here doing tests and waiting to speak follow up with my doctors in my future appointments. First day here I got 23 vials of blood drawn. I'd say that's a personal best! 😎

I'd be Lying if I Said I Wasn't Scared...

I have cancer. AML (Leukemia) to be exact. So far it hasn't exactly gotten any easier for me to say. Especially having a recurrence after 3 short months of being in remission following a stem cell transplant. I don't know exactly what that means in my case, if it's better to have it now than later, or if it's better to have been in remission for 2 years and then be in this situation then. Of course ideally we wouldn't be here at all...not with a recurrence, not with the initial diagnosis.

My friend gave me a Hallmark card, and on the front, it says, "I see you and all that you're going through...being stronger than anyone should ever have to be. Making your way one day at a time...bearing the full weight of something so difficult." And until now I have never seen myself as strong...I never quite understood what that meant for me, even with my diagnosis. Even in the beginning of all this I never saw myself as strong because getting through and recover was never an option...it was just a must, a for sure going to happen. There was nothing strong about me because I didn't choose to go through this, but had to. So what was so strong about me? It didn't click until earlier today as I read the card that my strength is me acknowledging, but not wallowing in my sadness and fear, my strength is being scared and facing this "shituation" head on, asking the scary questions to the doctors and doing all the tests that they need. My strength is knowing and feeling the tears I have inside, but putting a smile on my face charging through. My strength is asking for help when I need it and letting go with trust that my support system will support.

Through all the above I am still scared.

A few years ago my husband and I were having trouble with getting pregnant. Then we went through IVF...after 3 failed attempts at one facility we went to another and were successful after one cycle. When they retrieved my eggs, they got 8, and after fertilization of those 8, only 1 was viable. It was as if not only did IVF work this time, but it was absolutely MEANT TO BE! That I am meant to be a mother to this little being for years and years to come.

4 months after he was born I started to feel sick. Like a cold that wouldn't go away. I took multiple COVID tests, and was taking a bunch of medications to treat the symptoms, but they never went away. Then, my knee became so swollen I had to butt scootch down the stairs...there was no bending, no standing, all pain. We went to the urgent care who ran some tests and referred me to an orthopedic doctor. But I didn't make it. I spiked a fever and off to the ER I went. No one could figure out my knee issue. But what I do remember was the doctor saying, "I'm not concerned about your knee, I'm more concerned about your white blood cell counts. I have hematology and oncology getting ready to take you."

I was totally confused, not fully graspingwhat he had meant...and then I kept thinking that it's all just a misunderstanding because I have no history of cancer in my family, and I'm healthy and that's it. Turns out cancer is more of an equal opportunity kind of disease. Sure, certain people may have a higher chance of getting it, but in general cancer doesn't care. So then the oncologists come in and tell me I have "AML" and I had no idea what that was.  Acute myeloid leukemia is what it stands for. And in my mixed state of denial and positivity, I kept thinking that at least it was "acute" because that's not as bad as the word "chronic" right? I was wrong...

So then the fear and sadness flood quickly into my body as the seriousness of the shituation sank in. I cried and my husband, who I had never seen cry until that day cried. We cried for each other, ourselves and our family. "We just had a kid" I remember him sobbing...my heart was shattered. I was scared of the diagnosis, scared what this all meant, scared of the idea of leaving my husband and son alone, leaving my son before I got to even know him.

But we were in it all together and I got through my cancer. After a shaky start, I was able to get my transplant and things were looking and going up! I was in remission per my 30 day post transplant biopsy, my bloodwork was awesome, I was having restrictions lifted, everything was working out! Then like a bird hitting a glass window, we got the news on 1/19/2023, following my 100 day post transplant biopsy, that my cancer was back. I saw the look on the PA's face and I knew it wasn't good.

The fear came flooding back. It was almost like being diagnosed the first time. I still don't know which one was worse. Now that my son is a year on Feb 6th, I'm even more scared. I see him growing and doing all these new things, I just don't want to miss any of it.

But then on the flip side, in spite of the fear, he makes me fight harder so that I can be there. I want to be around for him...for a really, really, really long time. And that is what I plan to do. So I'm fighting for him. Also, I didn't go through all the whole IVF craziness just to come here and stop.

So here's to fighting the fight in spite of being scared!