Showing posts with label life with leukemia. Show all posts
Showing posts with label life with leukemia. Show all posts

Monday, April 13, 2015

The Transplant

It's finally happened.
Transplant day came and went.

AML | Stem Cell Transplant

I will no longer be me on the insides (at least that's kind of how I see it). Someone else's stem cells will try to graft to my body and generate a new, functioning immune system.

I know I should be more excited but I think my nerves have gotten the best of me.

It was a pretty anticlimactic thing. They infused the stem cells through my trifusion line in my room--like they would blood or platelets; no surgery or anything.

I suppose it's a bigger deal in life rather than the actual physical process of it all.

My nurse stayed in my room the whole time and monitored me, checking my vitals every 15 minutes. It was pretty cool cause you could see them (the stem cells) going through the tube into my chest.

I got 5 MILLION stem cells.

It seems like a lot, but any where from 4-7 MILLION is the norm.

AML Stem Cell Transplant

I wish I could say that I took some cool photos for you guys, but I didn't. I've been battling a migraine and so I wasn't really up to taking them myself.

I don't think you would have been able to see the stem cells anyway.
I just wish I would have been feeling better to document it for you guys.

The nurses did come in and sing "Happy Transplant Day [to me]" and brought me a cake and everything. That was really cool and sweet. It made the day feel special.

But these past few days have been super rough. From GI issues to a migraine that won't go away (which has made me puke countless times), I've just been physically a walking nightmare--emotionally too.

After four months, I still can't believe this is happening to me. I look at photos all the time and think "wow, I complained about a lot in this life." I was down most of the time, not much seemed to keep me happy. I was happy, but I bitched a lot.

What I wouldn't do to go back living days like that? Not that I want to be ungrateful; I don't. Life was simpler then. I miss the simple life--worrying about what to eat for dinner or going to the grocery store and now it's all about getting this cancer out of my body and "saving my life" talk.

I feel like I'm lying to you guys sometimes. Some days I've accepted this life and other days I refuse to think it's mine. I wake up everyday in the hospital in a nightmare. I don't want to be here. I just want to be home; I just want to be home.

That's all I can think about. I don't know why I can't seem to snap out of it. I just can't get out of this mindset that I'll be home eventually. I'm just going to have a rough go at it until then. And it sucks.

I just wish I could get over the emotional part of this journey. I can't keep from crying. I can't stop from thinking. I just need my mind to be taken away from the heartache of it all. I need to be with my boys and then that makes it worse.

I spent the bulk of tonight watching videos of Brody from my Facebook. They made me laugh and smile. I miss him so much and remember all of that like it was yesterday.


-- A FEW DAYS LATER--

The boys came up and they are getting so big. I was feeling a lot better Friday so I asked my MIL to bring them up. Brody is a hoot, talking a lot and saying things out of the blue that just make me wonder where he gets his personality from. He's so much fun. And then little Bex isn't so little any more. And he has the biggest grin when he smiles. He's so sweet and happy. I just love those little guys so much.

On Saturday, I got a really bad migraine. It was brutal and the IV pain meds they were giving weren't helping. Then I started puking and had this nurse that was ridiculous. I almost cussed her out a few times. She was just slow and then disappeared for 4 hours. WTF. This bitch...

She was driving me freaking crazy. I was hot. I wasn't having shit that day. I was miserable.

Now it's Sunday and I'm feeling much better today. I got to see one of my favorite nurses that is a few floors below me and she always makes me feel better. She walks through the door and I get more excited than a fat kid at an ice cream shop or candy store... you get the idea.

I just love her. And I fell in love with another nurse up here too. She's so amazing, funny and is good at her job. She makes me forget about being up here and I get excited when she's around too.

And that's both of their gifts in life--helping us have fun while we are here, making me laugh and forget about the cancer crap. It seriously makes a world of a difference on who your nurse is.

As far as the way I feel, I feel OK today. My throat hurts in a way it never has. It feels like I swallowed a rock every time I drink or eat. And my esophagus hurts. It's not sore, just painful. It's a weird pain.

My counts are starting to drop significantly so we are going to restrict visitors. I don't want to get an infection which could delay me going home. And infections at this point, can be fatal to me.

Unfortunately when your on this floor you hear of people passing, and it's sad. It breaks my heart for their families and some of them are so young. So when we get home we need to be extra careful for three months. It's a scary time, but it's a crucial time for me to get through these three months and start to feel better.

I know every leukemia/cancer case is different, but it's still scary to know some of the people down the hall aren't doing so well and then you hear they passed on.

It puts things in perspective though. We need to be extra careful during this time and over the next few months while my body goes through all of these changes.

All I can think about are my kids. I have to fight and get through this so I can be home with my boys. I have to.
I will.
I won't lose this battle. I can't. I won't.
I will beat this.

There just seem to be so many signs that I'm supposed to be here.
I probably wouldn't have found the leukemia so quickly if I weren't pregnant.
I had random back spasms which sent me to the doctor to get more blood work and that's when the leukemia showed up (three days after I went to the hematologist and the blood work was normal).
Bex could have died because he had this huge knot in his cord and I'd already had a placenta hormone problem which made them worry my placenta would give out before birth.

And then Bex did so well post-birth for a preemie that it was almost like he skated through it all like "I got this, Mom." And he's done so great since.

I'm just honestly so thankful for my boys. I love them more than they will ever know. And plus they are super cute!

Now it's Monday, April 13 and the chemo has lowered my counts. I just got up to walk a few laps around the unit and got so tired, so quickly. It's amazing how quick your body will give out. I managed to do six laps around, but I'm pretty exhausted now. My throat is still hurting (it's called mucositis not sure how to spell that), but it makes it incredibly painful to swallow or eat. It feels like there is a rock in my throat that goes down into my esophagus and then tries to come back up on occasion. It's pretty painful. (I know I already said that once but, it really effin hurts).

Life on Cass Lane | AML


Beating AML I feel like I'm emotionally in a better place than I have been the past week. #finally #zoloftyourmyhero

I'm really trying to make sense of all of this and trying to remember that it's better I'm in the hospital than at home right now with the boys. I'm so immuno-compromised that any sort of sickness could give me an infection that could be fatal.

So, I'm just trying to remember that while I'm locked up "and they won't let me out." #oldschooljams

Anyway, I'm getting tired. Probably going to lay down for a bit. I'll try to VLOG later if I have the energy. But right now, I'm pretty much like the "clear eyes" guy that talks. I'm not too entertaining. Very dull and slow.

Hope all is well out there in the 'real' world.

Remember its probably better than my reality.
Which blows big toes.


Tired and Bored,


Monday, April 06, 2015

Heartache

Today I've been a walking dead zombie on the outside and the in.

I'm physically there but mentally I can't deal. I'm not functioning. I'm on a one-way track to nowhere; just going through life's motions but not experiencing any of the joy I'm supposed to experience.

I can't shake the thoughts. I can't fight the fear. It's here. I'm in the thick of it. I want to fight. I am fighting, but I'm tired of how this whole thing effects everyone else--my boys, my husband, my parents, my sister, my grandparents, my friends, my family. I hate it all.

My heart just aches so heavily and hard at the thought of being away from my kids. It's killing me from the inside out.

After a rough day away from them, I need to just remind myself what it is I'm fighting for. I know it's hard, but I'm fighting to be with them--to walk with and watch over them as they age and grow in life. And that's what I have to keep reminding myself. It's only two more weeks but it feels like an eternity away.

I'm enduring all of this heartache now and experiencing jealousy that I don't have a so-called "normal" life anymore.

I just talked to them on FaceTime and it did lift my spirits some. It's just when Brody starts saying he wants "mommy to come home" it breaks my heart into a million pieces. He knows mommy is sick. He knows mommy is at the hospital and it's killing me.

I was afraid seeing his sweet face and hearing the sound of his voice, I would lose it and go back down into my tiny, dark hole away from everyone. I've just been distant the past two days with people I know--my friends, my family, my kids. It all seems like too much to process or to try to take in and handle.

It's a lot of hard work emotionally.

I'm up and down, I'm here and there, I'm like a one-woman circus catastrophe waiting to happen. I'm all over the place right now. I'm in a funk, I feel like a zombie because I can't snap out of what is happening to me.

The emotions of this all is what could ruin me. I think I manage the pain well, but it's the emotions that hurt. I just have to know that I'm not going to be up here forever stuck in this room, wasting away one day at a time--a day that I could be spending with my kids and loved ones.

That makes it hard. I see all of the beautiful photos that my friends are posting on Facebook of their kids having fun Easter hunting, and I won't get to do that with the boys because I'll be chained to my hospital bed. And that just sucks. But I will be able to do it with them next year.

But I do love seeing all of the beautiful photos and imagining what your days must of been like. What  went through your mind when you chose your family's semi-matching outfits, how many of you stopped by the store on the way to get some last-minute Easter supplies, how much good food you consumed.

I wish I could be out there doing the same with our family right now, but it's not going to happen.

I just can tell that all of the blood-life that pumps through my veins is draining out of me. I have this poison being cycled through my body, killing off parts of me (my immune system), so they can replace the "bad" parts with "good" ones. I get it. But it is literally life-draining; I don't know if the pun was intended on that or not.

SEE? I can't even make a joke.

My hormones and emotions are very top-heavy and it doesn't matter which way I lean cause it's gonna be a doozy of a fall. I just can't shake it. I need to, but I can't.

I do feel a little better tonight than I have all day (this was actually last night that I wrote this). My mom brought me scrapbooking stuff with motivational quotes so I could work on a little project while I'm up here. And it kept me busy and helped me relax. It was actually just what I needed today.

Then, the nausea hit. And I got sick and sick.

I'm better now, but I just hope it stays that way. It was pretty awful.

I'm starting to feel worst physically, but it doesn't help that emotionally I'm not at my best. I'm dragging my feet everywhere--physically and emotionally--around and I just need help. I just need something to lift my spirits. I need something to know that this is a few weeks of nothing and we are going to move forward and this will be a distant thought from the past. That's what I want more than anything.

Distance from this. Distance from this pain in my heart.

I never thought that I would experience physical heartache, but this really does make my heart hurt. Being aways from the kids and living for two weeks in this room is going to drain me. I don't know how I can make it through this. I'm trying. I'm trying. Lord, I'm trying, but I feel defeated.

Please God, come into my heart and explain to me that this is all worth it in the end. Provide me with the spiritual distance I need from this hospital while I'm still physically in here. I need a mood changer. I need to step up my game. I know if I continue to go down this negative/depressed route, it won't be good. I need a better attitude. I need something to do.

Ok, Cass.
Life is worth it.
It will get better.
You're a fighter, Cass.

You can do this.

Cancer, you can suck it.