Saturday, March 21, 2015

No Sleep Tonight

***Please note this post was written two weeks ago, and I was just having a bad day. This was pre-wreck and pre-lumbar puncture.***

Acute Myeloid Leukemia | Life On Cass Lane


My chest is tight, almost like a heavy rock is sitting on it.
I have restricted breathing.

Something isn't wrong medically, at least I don't think so. It's my brain that has my body all twisted up in knots.

It's 11:41 pm and I'm wide awake... wide awake thinking.

Normally I don't go to bed before 11, but Klay has to get up crazy early in the morning, so I was trying to get as much sleep as possible before Beckham woke up for a late night feeding.

But somehow, even after taking an Ambien, I'm still awake.

My mind is racing and tonight is just one of those nights I feel legitimately scared.

I read an email earlier about my stem cell transplant. It seems that the transplant won't happen until mid-April because my donor is unavailable 'til then.

So then I start thinking... what if the cancer comes back before then?

I can only do the transplant while in remission. I'm scared it will resurface and then everything will be put on hold.

And my mind keeps going...

You're going to have to be away from your kids for a while.
Your kids are going to be bouncing around from house to house while I'm stuck in the hospital.
The road to recovery after the transplant is a long one--one year or more, they say. But for most up to six months, I have to be super careful.

I just attended a transplant class to learn more about the transplant and procedure along with a whole list of things they will tell me I can't do.

We learned a lot, but the main thing I realized is we are going to need a lot of help from my caregivers. Klay is going to school, working full-time and goes to the USAF Reserves one weekend a month. He does all of these things for us. The school helps better his future, but we also get some money for rent while he attends, and the Reserves is strictly for us to have good insurance, which we clearly need right now.

I feel so bad because I can't contribute. It would be absolutely incredible if somehow I could grow this blog and make even just a little money off of it. Though, if I don't make money, it's not going to change how or the reasons for me blogging. I will continue to do this as long as people are reading. I love doing it--money or not.

But you know who all of this is unfair to when it comes to the transplant?

My kids.

"Mommy will not be normal for a long time," I have to tell them.
"Mommy will be in the hospital for a while, so things are going to be different for a long time."
"Mommy won't probably be able to take care of you when you're sick, if you get sick before mommy gets better."

For three weeks, I won't be able to kiss them goodnight.
For three weeks, I won't be able to sing my "good morning" song to them.
For three weeks, I won't say "OK, Bro. What's for breakfast?"
For three weeks, I won't be able to bathe them, change diapers, or snuggle with them when they cry.

And that's just a guess for how long I will be in the hospital. It could be longer if there are complications and maybe a few days shorter if I just kick some straight up transplant ass.

I just hate it. I feel like a caged animal. And I haven't even started the transplant process yet.

And then I start thinking about the lumbar puncture I'm supposed to have (where they will run chemo up my spinal canal and brain to make sure no leukemia cells are hiding out). I was told yesterday that I would have to have that procedure w/ chemo done four times. FOUR.

My chest is getting tighter right now.

What if something happens to me?
What if my kids are left without a mommy?
What if I'm so sick I don't get to do normal things with my children?
What if the cancer comes back? I know I said that already but what if it does?
The "what if's" can drive anyone crazy.

I know I can't dwell on that, and I know I must stay positive, but some days I just want to cry.
This can't be my life. It can't. It just can't.

Why would God do this to me?
If it was to save my children from any type of illness like this, I'm all for it.
But I just can't understand the WHY, the reasoning, and I know no one does but Him. But why?

I know I will get a lot of comments telling me "only God knows," but it still doesn't make this fair. It still doesn't explain "why me?" It still doesn't explain why my family has to go through this.

Did I do something wrong in this life to deserve this?

These are some of the questions and thoughts that keep me awake at night.

My life has been turned upside down in three months.
My family's lives have been turned upside down too.
I'm so tired all time.
I'm so physically tired that today I could barely keep my eyes open and was just praying Bex would sleep for a while so I could nap. But then I have Brody to take care of, and it's not fair that I'm napping while he's watching cartoons. I should be playing cars with him on the floor or being active with him in some way. I should be taking him outside to see the sun because it's been way too long with all this crappy, cold, icy weather we've been having in Texas.

I'm tired of the appointments; there are so many appointments.
I hated going to the doctor before, but now I really hate it.
I'm there two-three times a week, at least. And next week, if platelets are high enough, they will schedule the first lumbar puncture (this post was written two weeks ago, so I just completed my first lumbar puncture yesterday, March 19. I'll talk more about this in a later post).

I'm tired of driving all the way out to Dallas. I'm tired of having to leave my kids at home because they aren't allowed in the office because other patients are neutropenic. I'm tired of only getting out when I have a doctor appointment. Otherwise, I stay home with the kids because I'm too tired to take them both somewhere. And any exposure to strangers or groups of people puts me at risks for infections.

I'm tired of taking this Nexavar pills. It make my neck and face all bumpy/rash-like and I have to take it so many hours before I eat or so many after. Coordinating my food around that medicine is the most infuriating thing because I like to snack. (But since I wrote this post, my doctor took me off! Virtual high-five!)

I just cannot believe all of this.
It's so difficult to process.

The only way I can stay sane sometimes is to joke about it.
Just to really just laugh about what is going on.
Just laugh about being bald.
Laugh about having no eyelashes.
Laugh about looking like a bruised banana.
Laugh about trying to get a "cancer discount" every where I go.

I just try to get through this in any way I can.
Tonight is just one of those nights I'm letting myself really feel the weight of it all.

I honestly don't care any more that I'm bald; that doesn't hold me back anymore. Whatever. It's who I am now; it shows the struggle I'm going through.

I just want a normal life again.
I want to be with my kids.
I want to be with my husband.
I want to be with my family.

That's all I want.
And I want this fear to go away, so I can breathe again.

I'm eagerly waiting to start the transplant, but I'm equally dreading it at the same time. I dread being away from my boys, from my dogs, from my home but I know I have to do this to get better and have the best chance at this.

Right now, they have me scheduled to go into the hospital March 30 to get a tri-fusion thingy put in my chest to infuse the stem cells through. I'll talk more about this and the timeline of the transplant in a future post. I've learned a lot about the process since the class this Thursday.

I was very nervous about the lumbar puncture and chemo, but now the anticipation for the transplant is keeping me awake at night.

I hate how much I won't be able to contribute to help out because I'm the one going through this mess. I hate that I won't be a "normal" Cass for my kids and family. I just want to be normal again.

On the plus side, I'll be getting some good drugs soon when I get admitted in the hospital... that should help me get some legitimate rest. Amen for some good drugs!

Drug me up and knock me out,


PS. The next week I got into a wreck. I guess things can get worse, but I feel a lot better mentally right now. I'm ready to kick some cancer butt and move on from this part of my life.