Monday, May 25, 2015

Nothing Is Ever Smooth

I guess life wouldn't be life if it weren't full of bumpy roads, ups and downs and the unexpected. About a year ago I wrote a post called "The Unexpected" where I announced I was pregnant for the second time.

Now here we are a year later and my baby is six months old (born prematurely at 30 weeks) after discovering I had leukemia while pregnant--talk about unexpected...

I guess I can try to bob-and-weave all life's punches and jabs, but eventually, life is going to strike and it's probably going to be really amazing or really suck when it does. Unfortunately, mine was the latter.

So let's bring this post back to where it should be...nothing is ever smooth in my world. At least not for the past year.

My last post ended with me hoping that I'd leave the hospital that Saturday (after going to check my bloodwork and liver levels), but instead I was admitted; it was only for one night, but it still sucked.

The kids were with my in-laws because Klay was working his scheduled Reserve weekend, so my sister came and took me to the doctor that day. And I was looking forward to some down time to recover from my bone marrow biopsy the day before.

And remember, I can't change I diaper (or I'm not supposed to) so someone has to keep the boys or be here with me all the time.

I did get out of the hospital that Sunday, but I had to go all the way back to Dallas Monday morning to recheck my levels. I stayed at the doctor all day (getting fluids and what not), plus I had a rough Sunday night (no sleep!) getting up and down for stomach probs. #ewww #ouch

So instead of the kids coming home Sunday, they went to my parents' house cause we had such an early appointment the next day and they aren't allowed at the doctor's office.

Anyway that Monday (which was last Monday), I felt like shit.

I could barely walk, my bum was hurting so bad from having to go to the bathroom so much, so I was weak. There were no fluids were left in me; I was dehydrated. The doc wanted to make sure I didn't have GVHD of the gut (which is super serious) so I spent the entire day up there getting meds, fluids and whatever else my body was low on (which was pretty much everything).

They let me go home Monday since I'd just gotten out of the hospital the day before and had an ultrasound on all my remaining organs (ahem, no more gallbladder) so everything looked OK, as long as I stopped going to the bathroom. But I had to go back again the next day so they could recheck my levels again.

On Tuesday, he frequent bathroom trips came to an end. But we still spent a bulk of the day there at the doctor office.

When we got home, we hadn't seen the kids in five days. So, I was beyond ready to be with the kids and even though I felt much better I was still really weak.

We got the kids home and we are playing with them when Bex starts to scream and cry.

Anyone who has been around Beckham hardly hears him cry unless he's hungry, but this was like an "I'm in pain, mommy!" kind of cry. Then we noticed he was chewing on his hands and he started running a low-grade fever (100.3).

I mean I just got my kids back for the first time in five days and my six-month-old is running his first fever and began a long four-hour stretch of nonstop crying.

Of course Klay is super worried if it's something besides teething that was hurting him because I could catch it. And because my immune system sucks, I'm super prone to catching anything and the chances of it being so bad where I need to be hospitalized or it being life-threatening is high.

And I'd just gotten out of the hospital four days ago...

So let's get this straight...the kids' first night back home:

  • Bex runs his first fever
  • I just gotten over a severe bout of... let's be honest and say the word--diarrhea
  • I was just discharged from the hospital for high liver levels and DO NOT want to have to be admitted again for sickness
  • Bex is screaming his little lungs out from pain
  • I'm two weeks post-gallbladder surgery and not back to normal
  • And since we switched back to AT&T U-Verse all of my recordings I missed while at the hospital didn't record because I haven't set them up yet #thankyouJesusforondemand
Not that the last thing matters, I just wanted to throw that out there.

But seriously LIFE, give me a break would you? 

My main concern of course is Bex. Sickness complicates and makes things extremely difficult in every household, but it in ours it's exceptionally tough. My mom has to come over Monday-Thursday and sometimes Friday to help me with my kids because I can't change diapers and I might feel bad or feel weak. She also watches my niece three days a week, with my kids, so that's two toddlers who fight a lot and one baby. She comes over not just so I can rest when I feel bad or make me lunch or dinner (sometimes, I need some more home cooked meals, mom! LOL. JK, kind of) but someone has to watch them so I can go to the doctor.

But no mom ever wants to see their child in pain or sick, including my mom or me, or any parent. But if it happens, I want to be there for them. I've felt helpless because I can't do anything to make it better for Bex, especially because Klay didn't want me touching him "just in case" it was something else besides his teeth.

Anyway, we finally get our little men to sleep and the next day everything is much better...


we notice some spots coming up on Bex's tummy. At first, I thought he had just scratched his tummy but by the next day it has started to spread. It was all over--legs, feet, arms, face. 

First thing I googled was hand, foot and mouth, but it didn't really sound like it. Then I thought maybe it was a teething rash, but those normally don't spread over the whole body. Of course I was hoping it was an allergic reaction to detergent or something like that, but nothing really made sense. 

Two days after his "bad night," he acted fine. He was drinking, eating, sleeping and being the happy boy he always is; most importantly, he had no fever.

He wasn't acting like anything was wrong. 

That Friday, we went back to my doctor. 

My amazing doctor has the most awesome and best assistant ever! I love my Katie!! Anyway, she gave me some news...

My liver numbers went down and are closer to normal! 

And the bone marrow results showed that I'm 100% donor and ZERO leukemia blasts!!! 

That was the best news I've heard in a long, long, long time! 

Now that doesn't mean I'm "cured." It means right now my donor's immune system is fighting mine and so far she's kicking mine's ass, which is great. But it can flip flop and change. It does happen, so I'm trying not to get too excited, but it means that the transplant is working and doing it's job.

So that was amazing news. Klay kept saying "look how happy she is!" talking to Katie. And he grinned from ear to ear and I could see how long it had been since I'd really shown that much happiness and I saw his face and how much me being happy affects his happiness. 

All three of us were thrilled. I needed that news and I think we all knew that after the past several weeks.

Then, we showed them a photo Bex's rash just to see what they'd say about it. My doc was afraid it could be viral and if it is, it could be deadly to me if I were to catch something like that. They warned me to stay away but to take Bex to the pediatrician Saturday morning to see what she says.

My mother-in-law was watching the kids at our house while we went to the doctor and so she ended up taking the boys to her house. Her and Klay took them both to the pediatrician on Saturday.

The result? Brody had started running a fever Friday night and showed spots on his belly too. Bex had some ulcers in his mouth. Conclusion: Hand, Foot and Mouth. 


So my kids had to go somewhere again, away from mommy and they are sick. There is nothing in the world that would make me ever want to have someone else take care of my children while they are sick. That's my responsibility. They are my babies and when they are sick, they should be with me. It kills me knowing that I'm not the one holding them and comforting them when they feel bad. That's part of being a parent and I can't fulfill my duties because even though I'm 100% donor, my immune system is marathoning it's way back to normal, which to be honest is more like a marathon with turtles trying to get to the finish line.

That was Friday. 

And I felt good earlier on Friday. I had gotten great news, but had to stay to get fluids. Then I took some meds that made me jittery and it made me like a crazy person, so they gave me some anxiety meds to calm me down. I was already only going off of three hours of sleep, and had some nausea med (known to make you sleepy) and I felt like I was gonna barf (not a good combo).

On the way home I fell asleep and then when we got to the house the kids were still there with my MIL. Looking and feeling like a zombie, I slowly made my way to the couch laid down and was out in minutes. I woke up and the kids were gone and it was 1 a.m. Then I took more meds and went back to sleep. 


Slept till like 10 a.m. 

Klay took a photo of me sleeping for y'all to see how "out" I was...

Ha I'm kidding. I'd kill him. OK. Maybe not kill him cause I kinda like the guy, but I'd smack him around a bit or maybe I'd just fart on him. Luckily he kinda likes me too, so he didn't take a photo.  

Now it's Memorial Day weekend and I'm away from my boys, AGAIN. I hate it. I'm supposed to stay away from the kids for five days after Saturday's doctor appointment.

Bro has ulcers in his mouth and so do I. Bex seems to be normal.

I just hope I get to see them soon. I miss them so much. It breaks my heart to feel like I'm not a mother to them. I'm not the one who changes the diapers, cares for them while they are sick, I'm nothing. I'm just called "mom," but I don't feel much like one any more. 

I just want to be with them. That's all I want--to be with them. I want to show them how much mommy cares about them. Instead it seems like I'm selfish cause I'm gone all the time and pulling daddy with me because I'm trying to get better. I'm not really pulling Klay, but it probably feels like that to Brody. And I hate that. I wish I could really make him understand. 

It's sad when he goes to his grandparents because he says "where's mommy? She need to get better?"

He automatically thinks I'm in the hospital. He built a "building" out of legos and said he built me a hospital so I wouldn't have to go.

I mean super sad face. 

And he wants to be home with us. He can say it to us now too. He verbalizes that to us and tells us "to pick him up" and that breaks my heart that we can't. I want him to be here. I want him here at home, but it's not a good idea for either of us. 

Beyond just shitty luck with sickness, hospitalizations, etc., someone side-swiped my new ride while Klay was driving on the highway. It was a hit and run and they sped off an exit before Klay could see anything. And then Klay hit a pothole and now has a knot in his truck tire, so we need to get that fixed too. 

It's one thing after the next, but honestly I don't even care about that stuff. When I found out, I was like "ehh whatever. It sucks. Yeah it was my car but whatever, it's a car." 

And that's how Klay felt the other night about his tire. "It's just something else. I'm used to it now," he said. 

I am too, babe. I am too. 

Plus having a life-threatening illness can put things in perspective for you. LOL. At least it has for us.

I was in bed with Klay last night and our feet were tangled and rubbing each other's and you know what I realized? The only thing that's ever smooth in this world are his feet and Beckham's bo bo. 

But seriously, he has the softest feet. Mine? They are like sand paper. And I thought, "I feel bad for him, I know my rough-ass feet have to hurt his silky-smooth-beautiful man-feet." But he stayed tangled up in mine.

He didn't say anything or crack any jokes about my raggedy feet, which happens on occasion. Instead our feet stayed twisted together and I smiled as I drifted off to sleep thinking I was the luckiest girl in the world.

My life may never be "smooth," but I married the man with the softest feet and he doesn't even care that they are wrapped around my dry, cracked, ratchet heels that might cut his precious toes.

Instead he just brushed his feet against mine, told me he loved me and kissed me goodnight. 

He's the only thing that calms this storm and all that surrounds it; him and his nice ass feet.

So now you know the truth... I'm severely pedicure-deprived, so don't mess with me or my sandpaper heels might cut you.

Jealous of my man's feet,

Saturday, May 16, 2015

The Truth

I'm sorry I haven't written in a while.

Between my gallbladder surgery, the transplant and trying to survive life at home, I'm just wiped out and sort of unmotivated.

Everytime I tried to write a blog, I just felt uninspired and closed my computer because I was writing literal shit. It was terrible.

In all honesty, for the past five months we've thought nothing about this stem cell transplant. I've been holding my own I think pretty good until now.

It was kind of like I kept repeating to myself over and over, "we just have to get to the transplant, we have to get to the transplant..."

That was me trying to take things one day at a time.

I didn't want to think too much about the transplant process, because I didn't want to be away from my babies that long. The doctors and staff said they'd make arrangements and exceptions for me given my circumstances. But I never asked what they meant by it or how many times I'd actually get to see them.

And emotionally, it was very difficult seeing them. My mind wasn't right. I just couldn't shake this "hospital-funk" that had me all in a tizzy.

I've made friends with a lot of the nurses, which is easy to do because you're around them for so long.  Except for those times I was in a lot of pain and they probably thought I was the patient from hell.

And even when you're walking the halls you see patients one day, and the next you don't. You hear about one passing on who never got to the transplant stage or learn of one I was supposed to meet, because we were around the same age, went home post-trans and got an infection that cost her her life.

That's why it's so serious that I be extremely cautious right now. It's not just my immune system being low, but I'm taking medication that also suppresses the immune system. There are so many lists of things I can't do or be around...

--People mowing their lawns
--People digging in the dirt or planting plants
--I can't dig in the dirt or flower bed
--No fresh flowers
--No cats or kitty litter
--No vegetables that are hard to wash unless we wash & steam them ourselves
--No changing diapers
--No cleaning up dog fluids
--No dusting or cleaning the house
--No one who has a runny nose or shows any signs/symptoms of sickness

Among many other things...

It's exhausting thinking about it.

And frustrated when I look at my house and want to swiffer my floors, because I see all the dust and hair floating around.

I guess the truth is I'm scared.

I'm afraid of getting sick and going back into the hospital. Unfortunately, it will probably happen again at some point--I hope not--but it probably will; I'm just trying to be realistic.

It's very scary.

I'm afraid of a lot right now.

I'm showing some signs of GVHD, which is a good thing. They want that a little. But my face is darkening and becoming more red with bumps on it, so everyday I look in the mirror afraid it's going to be worse. I'm itching all over now and have darkening of the skin in a lot of other places (which they say is the chemo I had prior to the transplant). And my eyes are getting worse, just more blurry and having trouble seeing things far off. But I've got dry eyes, no eyelashes and pretty much my left eyebrow is a goner.

I look like the cancer patient from hell.

I'm hideous.

If it gets really bad (the skin) that could mean another hospitalization. But most likely I'll start oral steroids first. Which the side effects of that include, mood swings, messes with my bones, weight gain, etc.

No, I don't want weight gain, I don't want any more issues with any thing in my body and I already have enough mood swings for a lifetime in one day.

And then, on Friday, I had another bone marrow biopsy. Whoopee.

Don't get all worried; it's standard to have one so many weeks post transplant. It hurt but it wasn't too bad.

The hardest thing we've had to deal with is trying to balance our home life. I can't drive myself to the doctor, plus Klay doesn't want me to drive or go to the doc alone. It's hard because someone has to watch the kids while we go to the doctor (no kids are allowed at the doctor under age 14) and then someone has to drive me to the doctor. And someone needs to be here with me at home to help with the kids cause I'm tired and can't change diapers.

I guess that brings up a lot of issues for me emotionally. I can't do anything to help. Everyone is busy and I get that, but we got a cancer sitch over here and I hate to say it--we need help. Klay's doing everything pretty much by himself--cooks, cleans, bathes the kids, changes ever diaper, gets up with Bex in the middle of the night (sometimes I get up too so I can feed him--that is the one thing I can do).

He works, he goes to school, comes home and then he is the mommy and the daddy.

This Mother's Day was a hard one for me. I just feel there is more distance now between me and my kids. I'm not the one taking care of them everyday, playing and changing diapers and that's hard for me. I know I need to get healthy so I can go back to the way things were.

But it's not just that. My energy is low and I get tired so fast. I can't cook, clean or take care of the kids. So if I'm not a wife and a mother than who am I?

I don't have a job and with everything else I don't feel like I'm contributing anything to anyone. I'm quieter more now than I've ever been in my life. There isn't much that keeps me talking.

I feel like I'm here, but I'm not here.

This is just how I feel. I can't help how I feel.

There are a lot of people going through much worse than me. I know that.

I'm just over all of this. I am over the appointments. I'm afraid of so much--of something coming back, of experiencing pain like I did with my gallbladder, of losing my mind, of not being close with my kids.

And the whole "mind" thing is a real deal. I can't remember if I take my medicine sometimes, I can barely comprehend what people are saying sometimes (I don't know if this is because I'm too tired to talk or what?), and I've been having trouble with my balance.

I ran into Bex's pack n play, which he was in, in the middle of the night and then into the wall two seconds later... having no sense of direction. It was ridiculous.

Klay sprung out of bed and asked "Cass, Cass what's going on? Are you OK?"

And he walked me back to bed after I got a drink of water and some medicine.

Who knows? It could be chemo brain or these drugs I'm on. It's probably both.

I had something else I was gonna say but now I can't remember...




Ugh, Fuck it.


On the upside, I am at home and not in the hospital. (Actually right now I'm at the hospital on this Saturday to run labs and make sure my liver numbers look good. Crossing my fingers!)

But since I've been staying home, I am spending time with the kids, which I love. Bex is trying to talk and laugh. It's so sweet and that boy does have the biggest smile. He has started teething so he's become a bit of a ham and he gets a little whiny from time to time, but those are the stages these little ones go through...
Life on Cass Lane talks the truth about life post-transplant

Brody is bouncing off the walls so happy that mama and daddy are home. He is so smart and talks SO  SO SO much. I don't know where he gets it from... LOL. He loves being a big brother, and he's very dramatic (I don't know where he gets that from either). Them two like this is a rarity.

Life on Cass Lane talks the truth about life post-transplant

They bring joy to my life but it also makes me sad to know they don't get mama's normal interaction as they would if I didn't have this cancer stuff.

I want life to be normal again. Simple. I know it's going to be a long time before that happens, and I have to stay strong and stay motivated to get up and move around.

Today I've actually felt somewhat better than have in over a week, so I'm hoping that's a good sign.

So please my dearest liver, don't EFF with me today.
I don't want to be here at the hospital again.

I'm kinda in a good mood, my spirits are a little better today and I'll take that any day of the week.

Tired but better today,