Tuesday, November 24, 2015

Another Hospitalization for 2015

I haven't written this month, like I promised I would--and I'm sorry about that.

Honestly this month, it's been one thing after another.

Remember how I told you that I would have these days where I'd stand or walk and then I'd see all black?

Well that's what started happening again Halloween weekend. I honestly wore myself out from Halloween--and the stress of getting the kids' costumes ready--so much so, that the next day I was too sore and weak to get out of bed.

All of these fatigue and vision problems fell right before this random Monday where I had to watch the kids alone. Perfect timing, right?

 I was really scared to keep the boys all alone all day with how I felt.

That day, I'd stand up to get something for the kids and I would black out and desperately reach out for the nearest sturdy object so I wouldn't pass out or fall.

Besides the vision issues, I couldn't walk a straight line to save my life. My balance was completely off that when I would try to walk one direction, my body would go in another.

Now these things have happened off and on for a while. But this particular symptom--didn't happen until Monday, Nov. 2--the day I was alone with kids. I starting hearing my heartbeat in my ears.

I spoke to the doctor's office and they said come in immediately, or if it kept happening I'd need to call 911. The problem was I had the kids.

Klay was nearly two hours away working. And all my immediate caregivers happened to be tied up (vacations, picking up kids from school, etc).

Klay made it home about 4 p.m. and we needed to get to the hospital and fast. We arrived at my doctor's office who were waiting for me, because my doctor wanted to check on me personally.

They thought I was having some vertigo issues (where you sit and your BP is fine and then you stand and it drops) making the room spin or get dizzy, which I did have some of.

I'd already had CT scan of both my brain and sinuses the week prior, but they definitely wanted me to stay to do some more testing.

Sinus Surgery Stories

So I was in the hospital the first week of November, and the MRI revealed that my sinuses were terribly blocked and full.

Apparently there was a lot of gunk stuck up there that needed to be sucked out. And if you're grossed out by that sentence, at least you didn't have to have the sinus surgery to remove it. Yes, I said sinus surgery.

I was in pretty bad pain after the surgery. I was hurting so bad and they couldn't keep me comfortable. I had a bitch  rude recovery nurse, who would just ignore me when I spoke or tried to ask questions. I was in recovery for nearly two hours, and I was not happy about it.

Then, they moved my bed out by the nurses' station and I was trying to wave or get my nurse's attention--who was apparently done with me--and then a nurse saw I was about to yak and she handed me a nice blue barf bag. I'd swallowed a lot of blood because of the type of surgery, so you can imagine what was in the bag. Scariest thing ever. Am I dying over here? Scary movie-type shit. 


Sinus Surgery Story
With me every moment...

Laughable Hospital Moments

That Familiar Place...

When I was first admitted, I was wheeled up to the floor I was going to live, I mean stay in, for however long. It was an oncology floor, of course, so I expected to know a lot of the nurses.

All of the nurses were waving to me as I get wheeled to my room seemingly happy to see me. I waved back as I'm pushed in the wheelchair to my room like a pageant girl in a parade--unknowingly of where I was going. I was focusing on the attention clearly.

Then I hear the nurses holler "aww, you get your old room back!" Yes, the one I stayed in for more than a month.

OMG, I never wanted to see that room again. I'd done my time in that prison. But that's just my luck.


Noticing Things I Should Have Noticed Before

After having stayed in the room for 30+ days in April and staring at the walls of the room for hours on-end, you'd think I would have noticed "it" before. The portrait was there, I remembered starting at it; this I know.

I bet I looked that painting more than a million times, yet I never seemed to notice the penis rock on the left-side of it.

Yeah it's that big rock that looks like a penis. I'm determined the artist did that purposefully or maybe this place really exists. If so, I'm visiting!

I self-titled this portrait, "This Penis Rocks."

My revelation was a hit with the nurses.


When I Thought I Saw...

I was wheeled down to get a MRI, when I see the MRI Tech guy. I'm asking myself 'who does this guy look like?' He was adorable. I finally realized he looked exactly like Morgan (Lenny James) from "The Walking Dead."
I arrived back at my room and squealed to Klay with excitement "guess who I just saw?"

He replied, "Who?"

"Lenny James!" I hollered.

"WHO?" Klay said to me with an I've-never-heard-that-name-in-my-life look.

"Morgan!"

He stared at me.

"Morgan from 'The Walking Dead'. You know that show we watch every Sunday and yesterday's episode was all about him?"

"Ohhhh. That's cool. He's here?"

"No it was a guy that looked exactly like him though."

END SCENE

I guess it's the littlest things that excite you in a hospital.

==

I spent a total of five days in the hospital, but my readers weren't far from my mind.

Y'all, I have eight posts written and saved in my drafts folder that aren't finished yet or need some major editing.

It doesn't help that I need glasses and I'm on drugs--pharmaceutical ones--so literally I've fallen asleep typing--totally face to key board.

I'm trying to get posts out as often as I can without looking like a complete fool, which means I won't publish it unless I think someone else may want to read it.

Since my brain is so clogged up, please feel free to message me or comment and let me know I missed a word, wrote it twice, etc. I need you little editors to help me out there! #writerswithcancerstruggles

Let's just pray that I get through these holiday months with no more hospital stays!


Wednesday, October 28, 2015

How To Pick Out A Last-Minute DIY Halloween Costume

I've never been to a halloween costume party--like never.

October is always a busy time of the year since it kicks off three of the biggest fall holidays of the year, and it's my birthday month.

With everything that's happened since my Acute Myeloid Leukemia (AML) diagnosis I figured I throw my very own halloween costume party.

If you've ever seen our parties we throw for wedding showers, baby showers, or our kids birthday parties, we have a tendency to go overboard. We don't really like to buy store bought decorations, because we want everything to look different and be unique. And that goes for our costumes as well. We usually make our own costumes.

how to find diy halloween costume ideas


Last-Minute DIY Costume


So, I started googling and thinking of DIY costume ideas for couples weeks before the party. I wanted to be something "kind of pretty" because I never feel pretty any more. Even though I wanted to be a "pretty"halloween costume, I wasn't going for a "Mean Girls" type costume where I where lingerie, put on mouse ears, so I can look like a slut muffin.


Gretchen: "What are you supposed to be?"
Karen: "I'm a mouse, duh!"


Not that there is anything wrong with a "sexy halloween costume," it's just that's not me, especially when my legs like frail, pale and I have no ass or boobs any more.

OK, so back to Halloween costume decisions. I went to Spirit Halloween Store to try to get some ideas, but didn't get much. I even checked out Party City, but now we knew what was out there in case we needed to purchase something for one of our costumes.

Couple Costume or DIY Single Costume? 


AHH, decisions, decisions. Originally I wanted to go with a couple's costume, but it needed to be something new, fresh and something I could make myself. I've seen the soap and the loofa sponge, salt and pepper, etc. I wanted a unique halloween costume that would be easy to make.

I wasn't too sure how much Klay would want to dress up. I figured he wouldn't want to make up and anything too difficult. So for him, I was thinking about easy, creative and simple halloween costumes.

By this point I'd been looking for weeks. I had one idea that really stood out for me that I wanted to do, but he didn't seem like he wanted to participate, so I said "I'll just do it myself."

But now we are down to the week of my party. It's Wednesday (the party is Saturday) and we are still clueless on which costume idea we wanted to go with and if we were doing something separate or as a couple.

My blood pressure was rising because it's my party and I haven't started making a costume for it. All I wanted Klay to do is decide if he wanted to do a couple's costume or create something funny and just go as something separate. But still no decision.

Last EFFIN' Minute DIY Costume Idea


It's now Thursday and I'd purchased some items to create a costume by myself. Klay on the other hand bought a Game of Thrones Jon Snow costume with a wig and it looked hilarious. The only thing was Jon doesn't have a girlfriend or anything we could do as a pair and people probably wouldn't know who we are. Klay looked hilarious in the Game of Thrones costume so I didn't think it would matter; people would just laugh at him anyway.

Once Klay put the costume on for my mom, she cracked up and told me I need to be something that goes along with his character. Mind you, it's Thursday night--the party is Saturday--and I still haven't started on my costume. Finally it hit me. Jon Snow has a wolf that protects him, named Ghost. He's all white, so I said I could be Ghost!

Making the Costume


The next day (Friday), mom went searching for all things white and furry.
This is what the costume consisted of:


Here are some photos of us figuring out what looks best (sorry for the blurry one. And doesn't it look like Klay was enjoying putting my costume on a little too much?:

Here's the finished look:

Klay just wore a black t-shirt he had already and black pants w/ flipflops underneath his cape.

Game of Thrones DIY Halloween Costume

ADD IN THE AWESOME WOLF MAKE UP MY MOM AND SISTER DID & WE LOOK PRETTY GOOD FOR OUR FIRST DIY HALLOWEEN COSTUME!

Game of Thrones Halloween Costumes


Jon Snow and Ghost Costumes

Game of Thrones Costume Idea for Couples | www.lifeoncasslane.com

How To Think Of Clever And Simple Ideas For Last-Minute Costumes


The way I see it; the best ideas for halloween costumes come from the things you love. 
Think about things you love to do, you love to watch, commercials that catch your attention, something big that happened in the news/pop culture this year or puns you hear people say.

The World's Easiest Costume Could Come From A Clever Saying Or A Common Pun: 


Example: We've all heard someone say "when life gives you lemons..." But how can that be a costume? Get a plain t-shirt write the word "LIFE" on it or get one of those stickers that says "Hello My Name is: LIFE"  and walk around the party giving people lemons--you're surely guaranteed to have the most unique halloween costume there and the cheapest.


TV Shows, Movies and Commercials You Love: 


Klay and I love "Sons of Anarchy," "Breaking Bad," and "Game of Thrones." Originally we thought about being Jesse and Walt from "Breaking Bad" and wear yellow hazmat suits or Klay could be "Heisenberg" and I could be crystal meth by making a shiny blue costume. It probably would of been a quick costume, but I wanted to be "pretty-ish".


Be Something You Love To Do: 


If you love to golf, your DIY halloween costume could be a golf ball. But you're not going alone? Make the costume for a couple by having the other person dress up as a hole in one. Make it homemade by creating a number one from a cardboard box or poster board and cutting a hole in it. Your costume would  definitely be creative and easy to do yourself.


Think Simple To Get The Clever Costume Ideas:

You could be a squirrel and his nuts or Taco Bell (one person be a taco and the other be Belle from "Beauty and the Beast.") Too tough? Or don't have time? Be a bread winner. Place bread around your neck like a necklace and purchase a blue ribbon that says 1st Place. Be a spice rack. Put a bra outside of your shirt and put cooking spices in it.

Use A Commercial You Love For A Unique Costume Ideas:

Two more DIY Couple Costume Ideas could come from a TV commercial that gets your attention. I've heard many men mention "the hot model" and her talking horse from Direct TV's or make your man The Most Interesting Man in the World and you could be a a DOS XX's. Of course you could be Flo from Progressive or Jake from State Farm! Make sure to wear khakis!


Creative Pop Culture Costumes Ideas:

Tom Brady and a deflated football (I'd get an old football deflated it and some how where it as a hat...) or Tom Brady and his broken cell phone. Not a football fan? Try Hillary Clinton and her classified emails, or Caitlynn Jenner and Bruce Jenner (they actually have costumes for these at Spirit Halloween, but you could definitely DIY.

So do you have any halloween costume parties to go to this year? If so, what are you going to be?


Wishing everyone less stress when choosing a DIY halloween costume!

Sunday, October 25, 2015

Why I Decided To Blog For A Living

Life Was Put On Hold

When I moved back from Alaska, my life was put on hold. I was still working for the University of Alaska Anchorage (UAA) from afar, but it was only for another six months or so. Then, I got pregnant and my search for a job in Dallas ceased because we needed to find a house (we were living with my parents). After two years of being a stay-at-home mom, I wanted to work again. I'd worked for UAA a few more times after I had Brody, but they were temporary jobs. Then, I started looking for work and sending out resumes, and I found out I was pregnant with Bex.

My life kept getting put on hold, which meant my dreams were put on hold. I always thought I would have a job of my dreams (doing what? I don't know...), but I thought I'd get to a happy career-place. I'm a mom now, who is 28, and I haven't worked full-time since 2012ish.

So I'm ready learn and put my knowledge to use on this blog to hopefully make a profit. Here are some reasons why...

Why I decided to Blog for a living | www.lifeoncasslane.blogspot.com

THE KIDS

Bex is on the move now, so he is the most difficult child to put a diaper on. He just flips over and starts crawling away and if I don't catch him fast enough he just pees on the floor. He's been crawling for nearly two months and he's pulling himself up in his crib and by the couch, so now I have him getting into EVERYTHING.

If I could only figure out why babies love to get into dog bowls all the time... or a solution besides having to put them up (cause then we forget to feed our poor dogs). SIGH...

Now I'm moving my decor around because he can reach breakable things and whatnot. I'm trying to "baby proof" my house.

But he is a little chunk. He loves to eat. He tries to steal whatever we're eating. He has four teeth now and more coming. His teeth bother him more than Brody's ever did.

And we are still potty training Brody. I know it sounds bad, but with me in the hospital so many times this year, he hasn't had consistency when it comes to his "training". I've been really working with him the past month. And for the most part he does good, but today was just a bad, terrible, awful. He peed his pants three times. And no to Adam Sandler in Billy Madison "it's not cool to pee your pants!"

If you don't live in Texas we are getting some major rain down here, which scares Billie. So I'm pretty sure he's pissed in a few places around the house, plus Brody peeing in his pants, and with Bex crawling around and peeing, my house smells like piss. At least, I feel like it does. Everyone is peeing everywhere. And I'm going crazy because of it.

Mentally, I need some time away from the kids to do something and have some sort of structure and routine to our daily lives.


SOMETHING TO THINK ABOUT BESIDES CANCER CRAP


Medically I'm doing mostly OK. I've had to get several infusions because I've been low on magnesium, potassium or just need fluids in general. That means my doctor appointments are long. And I'm going mostly just once a week, but I've had to go a couple times a week depending on how my bloodwork looks. But I'm still in remission for the AML, but I could do some blog work up there due to how much time I spend up there a week.

For those of you who want to know about me medically, I'm going back on Nexavar--the oral pills that cost like $14K. The last time I was on them I got a really bad rash that just wouldn't go away.

Don't worry; the cancer didn't come back or anything, that's not why I'm going back on them. They are using the medication as maintenance. I have a bad mutation that is aggressive as hell and notorious for coming back called FLT3, and this medication targets that mutation. They want me to stay on it for a year for precautionary purposes. Doc said maybe even stay on it for two years from my transplant date which was in April depending on how I handle it. One to two years!? WTF. I hope that changes, but I'll do what the doc wants cause he knows his shit, by shit I mean leukemia.
Now tell me if this isn't crazy... Apparently, they are going to experiment with me (I'll be the first EVERRRRRRR) to try and see if we can desensitize myself from the side effects of the drug. So, for a few days I'll have to take a quarter of a pill for one day, and then start to slowly increase in the coming days.

I'm pretty nervous for that. I was actually suppose to start this weekend, but then I didn't buy a pill cutter till yesterday, and I wasn't about to try to cut pills that cost like several hundred dollars each and them break into a thousand pieces. So, I'm holding it off till next week on that.

But thinking about all this cancer stuff every week becomes exhausting and I need an outlet where I can talk about some new, regular things in my life. That doesn't mean I will stop telling my stories about how I feel about having AML and what not, I just need to talk about more things.


TURNING 28...

I recently had a birthday and turned the big 2-8! So I had a party because I thought I deserved one after all that has happened over the past year (more to come on that later). Another year older, another year to celebrate life. This also motivated in really making my job my blog--and a dream come true.


GETTING SERIOUS ABOUT BLOGGING TO MAKE MONEY


This is a really BIG DEAL for me.
I've decided to really focus on my blog and try to take it to the next level. And of course, you, my readers are big part of helping make me more successful.

I know what you're thinking, "you always say you will post more, Cass and never do."
But I'm really going to put more effort into this blog.

I'm tired of just having my weeks consist of doctor appointments and taking care of kids. I really need to do something for myself. I'm going crazy all the time at the house. And I'm not at full strength so I still need help with cleaning, cooking and the kids. I get way too tired too easy and that stresses me out. Blogging makes me happy, less anxious and I can make money from home. Plus, it's fun!

One of my favorite bloggers, Helene In Between, wrote a post the other day that spoke to me, entitled "Do You Know How To Figure Out What You're Good AT?" Go read it. It's an amazing post.

Like me, she also has a communications degree, and when she was growing up she didn't know what she wanted to "be" either. There are so many people who knew early on they dreamed of being a nurse, doctor, lawyer, accountant or engineer. I, on the other hand, had no clue what my talents were. What was I good at? What am I good at? What do I enjoy?

I knew I liked to talk. I loved to dance. I like to read. I love watching new TV shows and I adore animals. And eventually, in college, I figured out I loved to write.

And that's how Helene felt too. She never felt like she was good at any one thing until she started to blog. And she thought she had to find a niche to talk about. I was like that when I first started blogging too.

I blogged about our 17-day road trip from Alaska through Canada and down the west coast. Then, I blogged about being a first-time mom. Now, my blog seems to be more about cancer or battling acute myeloid leukemia than anything. But I know now, I don't need a niche. I'm interested in lots of different things, so I want to talk about lots of different things with my followers and make some money while I'm at it.

After six years working for various companies, Helene decided to go and blog full-time, meaning blogging is now her job--her income.

I really want to contribute monetarily to this family, so I took an "Quit Your Job to Blog" e-course designed by Helene to learn more about gaining followers, social media, seo, how to make money, etc.

And boy, oh boy, did she put some work into that course.

It's loaded with information and well worth the money. I have pages and pages of notes from her videos, plus worksheets and invaluable resources (that I never heard of until her course) to help me grow my blog, my audience and even make some money along the way.  If you're a blogger, I encourage you to take the Helene's e-course .

Don't worry guys; it's not going to change my writing in anyway. And I'll be working my butt off. Blogging is hard work; there is so much you need to do for each post so it takes a lot of time.

But I will be the same ole crazy, quirky, OMG-did-she-really-just-say-that-Cass because that's who I am. And that's how I write. I'll still tell it like it is and that's not going to ever change.

But I don't want this blog to be all about my journey battling acute myeloid leukemia. Of course if I can help someone talk by creating a cancer support group on Facebook or something, I will totally do so.

But for me, I have to talk about other topics too. The cancer stuff can be a little heavy for me at times and sometimes I just want to feel normal and forget about that part of my life.

Now, I'm asking you guys for your help.

I'd like for you to take a survey and answer a few questions for me about my blog and what keeps you coming back.

I have two surveys I'd like for you to take. They are very brief and multiple choice so it should take you no time at all, plus it would help me out greatly.

  1. The first is about Demographics. I just want to gaining knowledge about My Readers/Followers. Please take this survey first.
  2. The second survey is all about my posts and what you like and don't like... Please take my survey about my blog posts here.


Thanks for being so amazing you guys! And I appreciate your support as I start this venture!

Wednesday, September 30, 2015

2+ Weeks Hospitalized + Wishing For Better Days

There were so many times I've wanted to write and tell everyone what's been going on. I just haven't had it in me to sit and write.

Technically that's a lie; I've had some time, especially since I was hospitalized on the 9th--and it's now the 24th of September and I'm still here. Ugh.

I guess I just didn't have the energy to "go there" with my feelings and let it all out because I knew it would break me. Plus, pneumonia and computers don't really mix well. Apparently that's what I have, some kind of pneumonia. For a while no one could quite figure out what was happening--my oxygen levels were dropping into the low 70s and 80s and nurses freak with anything below 90. I couldn't get all the sinus shit out of my head.  

So I was wearing oxygen all the time, and all of my countless nurses kept telling me they were all worried and trying to figure out different meds to see if I would get any better. I was there for more than five days and nothing had really improved. My oxygen levels were worse. I couldn't breathe long enough on my own to go the bathroom, so yes, I had to use a bed-side commode like an ole lady. But I was OK with that. Didn't want to have local headlines
reading "Walking to the hospital bathroom in patient's room kills 27 year old all because she had to take a shit."

So I opted bed-side was the best. I was hooked up to too many wires and what not anyway, it would take me 10 minutes to finally get to the bathroom and by that time my oxygen sats were going down.
And then I'd have a coughing fit. 

From what I'm told about the pneumonia I had really put me in pretty rough shape, though mentally I didn't feel that way... I just kept thinking I'd be here for a few days. "Just a few days," they'd say and I'd believe them.

But after many days, lots of antibiotics and fluids running through me, doing breathing treatments (or scary smokey eyes), I wasn't improving much.
Life on Cass Lane

Obviously I'm still here that's why it's 12:32 am and I'm telling this white screen how I feel. Over the past few days, I started to feel better and today was the day, I knew it was a stretch but it was my first real shot to go home. It's been two weeks since I've seen my babies a few times on FaceTime. It's been too long since I've witnessed Brody's little giggle when Daddy tickles him, I've missed seeing Bex's first tooth make its grand debut, I've missed waking up and cuddling Bex back to sleep, I missed my snuggles from Brody and all of the funny things that he said since I've been in the hospital.

Over the past year I've missed too much. Bex is halfway crawling across the floor (and making pretty good time, I might add), and I am missing it. I'm here away from them, sitting, doing nothing, not being anyone to my babies. I hate it so much.

I just lost my shit earlier. Like patient cw can't get it together.  

I couldn't deal. Klay left to go take care of the boys, Mom had scheduled a concert months in advance with her friends, so it's just me up at the hospital alone. I thought I could deal. I thought I could handle it. But I went looking through photos of Bex and Bro and I lost it. I want to be home with them. I can't do this crap any more. It's time for me to go home.

My nurses then came in to deliver some even more devastating news--I probably won't leave tomorrow either. 

But, screw that,  I'm going to give it my best shot. I can't do it any more with out seeing my kids. I just can't. I just want to be home.

So many times I wake and think this is a bad dream, but I open my eyes and see hospital walls, feel my head of hair that's growing back, sit up and look at all of the machines attached to me. It's all real. All of it.

I can't shake it.

Apparently people on the floor were really worried about me and I found out why. The whole first week to me was a blur. I had a procedure done, but I don't remember it. They said I slept all of the time. Meanwhile, a man in the room next to me was experiencing the same symptoms I had. He was older than me, much older, but he died this week.

How many times have I heard of people with cancer dying of some sort of infections? One too many and too many times too close to my rooms. I don't know how these nurses and doctors do it. One day a file is there with new updates from the patient, the next there is nothing to report. And that breaks my heart.

Someone I've known since, gosh, since I can remember, passed away this week after a long fight with breast cancer and many other health issues. I'm not going to pretend like I know exactly what they were, because I don't. What I do know is that Amy was a sweet, fun girl who I knew but never really hung out with, except when her brother and my sister dated in like third grade.

And when I hear of her death, I can't help feel guilty. I feel guilty she didn't get to experience some things that I did like--motherhood.

She had a long battle, but all I heard was how strong she was through it all. Everyone said she just kept moving forward like it was part of life, like it was her job to keep going to keep fighting. It was just like an obstacle to overcome. Even though she may not of made it to the end of our lives, we got to watch the end of hers--and from everyone I've spoken to she lived life having fun doing and trying new things.

I hope I can harvest some of that power and strength and use it in times of need, like now. I'm just not finding that strength, Amy, and I hope that you can help us from up there. I need some of your strength and attitude and it seems so selfish of me to ask for it. We haven't talked in years.

It all seems so unfair how someone just a few more years older than me is already gone. How is that fair? Why does one beautiful soul leave us and I'm still here? I don't understand. And for her family who have been through so so so much, I just wish I could take an ounce of pain away from you and this struggle. It seems so unfair that I'm here and she's not.

And I feel guilty because of it.

My eyes are swollen, red and causing all kinds of blurriness as my tear drops stream down onto my arms and roll to the keyboard. I lay in this hospital bed in tears thinking about Amy, the man next door, the people who passed when I was in the hospital for transplant, people who passed away before I could meet them and I feel guilty. To my great aunt Ann, who was a beautiful soul, and showed that through her love for her family, I miss her. This life is not fair. Why am I here? Does my family all get to make it to the end of this life in one piece?

Life on Cass Lane

It's terrible I ask such questions when these past two months, because I've experienced some of the purist happiness I've ever experienced. I totally rocked my bald head down an aisle at my best friend's wedding and felt beautiful all the way down the aisle. I spent the whole night dancing with Brody all night because he kept asking me to dance and telling me how pretty I was. I wrapped up the last song for me and my love to take a moment alone together. We just swayed back and forth, back and forth and he didn't let go even after the music stopped. We kissed. And just from his kisses and touch l'm overpowered by it. I can see it in his eyes and I know this man truly loves me with every fiber of his being. I smile and I'm genuinely in the moment, no worries, no fears, and he sees it too "she's happy," he thinks. And his eyes light up, his smile breaks free and he's kisses me once more.

And that was an amazing night, one for the books.

Stem Cell Transplant

And now I'm back in this negative hole and I can't come up for air. I'm reaching and grasping to hold on to that feeling to the happiness but something comes up that pulls me away from what makes me happy--my family.

This hospital is long and unexpected, I just want to be the caretaker of my family again. And what if I get sick again and wind up in the hospital for the holiday season? I missed out on all of it last year. I can't do that again. It will be Bex's first Christmas home with us. He was stuck at the hospital last year.

Tonight has been rough. My nerves are shot, I'm just a mess. I talked to the boys earlier on FaceTime and they were happy to see me. Brody heard me talking to Klay and I was crying.

Brody said, "Don't cry Mama. You have to get better so you can come home. I'm coming up there to see you. But you have to get better so you can come home and snuggle."

Well that only made my waterworks pump out faster. And then my eyes act like they have tsunamis coming out of them, just wave after wave, they come and they come and nothing stops it.

AML Sucks

The Next Day...

After finally falling asleep at 5 am, my nurses rush in to tell me at 8 am that I'm going home! So I should pack. I was so excited my my nerves were shot from being so upset the night before my eyes, were swollen, my face still red, and I needed to put myself back together.

I called Klay and gave him the news and headed up to the hospital to be there for my latest escape from Med City.

I got my med and med list and headed home. We stopped my Michael's Craft store on the way because I saw some cute little crafts for us and the kids to do. But as soon as we pulled up, I opened the door and puked. Good times.

Klay asked if I still wanted to go in and I said yes. So we got some crafts, and then headed to mom's house to get the boys.They were happy to see me. Bex weighed so much more it seemed.

We left and stared building this foam pirate ship with halloween characters on it. Brody really loves it. Daddy did most of the work of course and I did what I could. It ended turning out great.

I don't remember if it was the first night, but every day since we got home, I've puked every morning and stayed very nauseated, sometimes making more than one appearance to the commode or trash a day. And then I had a migraine Saturday and Sunday that were plain awful. I was out of my migraine med so I had to call my DR to get a prescription. I was in bed all day, getting sick, ice packs all over my face. It was terrible. Last night was the first night I slept and had a slight headache and I didn't get sick either. No toilet visits for me, at least not for on end.

Apparently I was supposed to go home on steroids and they didn't give me any or put it on my med list. And, we had been tapering me off of Program (the anti-rejection medication) for a month or so... I was on .5 mg a day. They bumped me up in the hospital to 6 mg a day. Prograf is prone to give you headaches and especially bad headaches for people who already get headaches quite a lot. So pretty much Prograf and I were going to be off to a rocky start no matter what.

So they think that's why I've been so sick. I was on such a heavy dose of steroids and then I didn't have any over the weekend and also because my high prograf level.

EFF this SHIT.

Now it's Wednesday, Sept. 30 and I'm feeling OK. Mostly tired and hungry cause I haven't eaten for the past week. I'm down to 145 lbs with clothes on. I haven't been this tiny since high school. Now I'm gonna need a new wardrobe. I've lost like 40lbs since the cancer stuff and like 55 lbs since the pregnancy. I look awful, plus I have a lesbians' hairstyle now. Not that have anything against lesbians' and super short hair, but I really never thought I would have the look myself. Maybe it's time for a trim. I don't know. Lez be honest here, I do love having short hair and not having to dry it and fix it. That takes way too much time out of my day. Maybe I just need a new wardrobe. Nothing fits any more.

AML SURVIVOR

I'll try not to be so damn depressing in the next post, and I'll try to post more often.

See what I mean about the hair? I kinda like it though. No worries, no cares, screw you if you think I'm lesbian. That just means Klay might have some competition if I decide keep this look... #lesbiansbeware #cancercassisonthemove #stupidstereotypes

Ready to feel better,

Monday, August 17, 2015

I Just May Have Finally Lost It

Suck

my

ass,

July.



Yes I just said that.
No, it's not pleasant imagery.
But you month of July, yes you, can now sucketh it. (And if you can't tell I miss Game of Thrones because I am Queen of the North moo-hoo-ah-ah-ah).

So WHY am I so harsh on July?
Because it's been nothing but a Bethe (that's pronounced "betch" like the one Ronda Rousey put out in like 36 seconds). So I'm gonna put this Bethe July down and outta my mind because it was just plain awful.

Oh by the way everyone, what up what up what uuuuuupp??

Sorry with all of the naughty language and imagery, but that's why you haven't heard of me in nearly a month--because July might have caused my first gray hair. And, yes, I do have some hair now--and a receding hairline (LIKE WTF!?!)... But we will talk about that later.

I guess you guys are lucky because I'm sitting in bed and I'm in that crazy ass mood where I write like it's nobody's biz-NUSS but mine. See that doesn't make sense but I don't care cause I'm making crazy EFFIN' faces at the computer as I type like I'm talking to the computer because this is a run-on sentence that I just don't want to end to be absolutely ridiculous and so I can continue to make faces like I'm a crazy person.

#ImightsoundlikeIamcrazybutIamjustbeingexpressive #art

I know what you're thinking. That bitch really lost it this time.

I don't know what got into me. It was like I don't feel like writing and I got up and got a drink of water and then it was like Bam! Crazy faces at the computer as I type. #inspiration #ifKlaywalksinhemightsendmetothehospital



OK before I continue, I will tell you some wise, wise words I read on a shirt I saw on Facebook earlier. No I didn't even see this shirt in person, but LORD I need it. #someonebuyitplease

Shit has really sucked lately, hence all of this nonsense cussing/derogatory terms, so if this bothers you then "Buckle up Buttercup, you just flipped my bitch switch." <--- That's what the shirt said. #whycantIeverthinkofsomethingsoclever

Anyway, I thought the shirt was funny.

Well truth is, I don't have a brain any more so that's probably why I'm a little "off". I know what you're thinking "Well, Cass you never had a brain. You were blonde, remember?" (I heard that in one in my head as I typed as one of those mocking voices people do to make fun of each other).

Well hardy, har har.

I did have a brain before (I graduated 6th in my class--and no, there weren't only 7 people in my class or 8 or 9 or 10 so HA!). I was actually book smart. But now, I can barely get out a sentence or remember what I wanted to say, it's got me talking just a lil teeny tiny microscopic bit less. But that's a lot when it comes to Chatty Cathy over here.

So I'm going through some ch ch ch changes.

And that's true in more way than one.

I'm 'kind of' going through a little bit of menopause right now already at the ripe age of 27 because of the sweet, sweet chemo I got pre-stem cell transplant. Chemo, oh how I love thee. #letmespellitoutforyathatwassarcasm

Ok, maybe I liked chemo a little bit cause it killed all of the in my body stuff that was trying to kill me, so I could have someone else's cells put in my body and hopefully be "healthy." I mean it did give me really soft and perky hair like a little baby chick. #Icouldwinthesoftesthairaward

So yeah apparently that's a thing--menopause in my life already. And we all know that can cause things like mood swings, dried up va-jay-jays, hot flashes and irritability, amongst many other things. Ahhh I'm living the life. My husband is so lucky to have me.

Something else that happened in July--Klay was gone for over two weeks.

And no, the menopause thing didn't send him packing, if that's what you were thinking...

He had to go to California for work/training stuff. He's in the USAF Reserves so he had to do some two-week training thing up there and worked the ENTIRE time, including weekends, and never left the base (poor guy).

Then he got back the day before our 8th wedding anniversary (which was on a Monday the 27th, so he had to go back to his normal job/work) only to work another 5 days and then to go back to his normal Reserve schedule his first weekend home in Ft. Worth.

So this is his first weekend off since 1998, I mean like July 11th-ish., which means I have not been to the damn grocery store in nearly four weeks because of several varying reasons and yes, I'm starving and no I haven't felt so great.

And yes, I'm about to list all of the thing that happened this past month, just so you know how much I really hate July.

So put on your big girl/boy pants and just read it. I'll even make it bullet points so you won't ask "when is this girl gonna stop typing?" to shorten it up for you...

  • Menopause at 27 #funtimes
  • Receding Hair Line -- LIKE OUTTA NO WHERE. I'm just glad I don't have dark hair, but it is super soft.
  • Klay's gone for like three weeks. Um, yeah. A lot of chaos scheduling people to take me to the doctor, scheduling new doctor appointments and trying to schedule people to help me to take care of the kids. 
    • Sub-bullet: Because he was gone I got up with Bex every night, so I was super sleepless for the most part and weak from the no eating thing.
    • I had no food and not much of an appetite so I lost weight. #score
      • SUB-sub-bullet: Because I lost weight, I'm now thinking my breasts go every which way but north. I already kind of had that problem, but it's intensified. #fail
  • We didn't get to celebrate our anniversary because this is Klay's first weekend free and everyone we know is either at the lake, vacationing, swimming, going to the Circus, Zoo etc, etc. I can't do any of those things cause those can all lead to infections for me so, yay with the summer fun! #notreallybecausesummersucks #especiallyinTexas
  • My G-Ma was in the hospital. It was nothing serious and she's fine. But I was a hot mess because of it.
  • I had a scheduled day to get my trifusion taken out (the thing in my chest with three tubes that hang out of my chest like I'm growing extra tiny limbs), only to have it canceled. But it did get pulled out last week on a whim because it wasn't working properly. #yes! But I was drugless. #whatashame
    • The reason my trifusion removal was canceled was because I broke out in a rash for two weeks (thanks to some oral chemo pills I was on--just for maintenance--we're trying to keep this sexy ass body healthy HA!) that was all over my face, head, chest, and... well... yeah let's just move on to the next bullet.
  • Not-So-Fun Fact: When you have really harsh chemo and a stem cell transplant your body grows new everything. New hair (ahem--everywhere-ahem), new skin, new taste buds and oddly enough new nails. Oh what you don't think that's weird? Well by growing these "new nails," my old nails are sitting on top of my of my new nails making it so I can't cut them, and it looks like I have two nails. It's really weird and they get caught on clothes and things because I can't cut them because it will tear into that pink part of the nail, which would hurt like a Bethe. So I haven't done much laundry cause I'm knicking all of my clothes. #ohIhaveplentyofexcusesfornotdoinglaundry
  • I can't drive. WHY? Cause I can't see. SO getting on the computer is kind of a pain cause I just get a headache... (part of the reason for my lack of online activity). When I drove a few weeks back, I really couldn't see the signs that well. It was pretty scary. I thought I might have to get someone to drive me home or pick me up or something. But I made it home myself. Now I just need to make an eye doc appointment. #blurryvision Thanks, chemo.
  • I have had another breathing treatment and boy did that BLOW. Hahahaha you get it? It really did though. It was terrible. It tasted so bad I thought I was gonna hurl and this is coming from a girl who... yeah I'm going to stop that sentence and just keep you guessing... And then it had this crazy effect on me where I was super jittery for the rest of the day and I was shaking and nauseated and it was just a crappy rest of the day. #breathingtreatmentsblowbigtoes
  • I had to make some other doctor appointments to see other experts about my body and all of the things all of this cancer treatment stuff does to you. SO now, I'm booking MORE doctor appointments with different doctors and I still have to go to the oncologist every week. 
  • It's effin' hot out here in this Texas July weather and it's only progressively gotten worst since August hit. I go outside for five seconds and I feel like I'm going to fry. Not only because I have super sensitive skin post transplant, but also because it feels like you walked in to a mythological Giant's big schweatty balls. Needless to say it's hot... And now have to start wearing hats cause my scalp burns if I'm in the sun for more than a minute. #myheadfeelslikefire

So this list could really be a list for "27 Ways to Get Your Husband to Find You Unattractive." 

I mean the menopause, the weight-loss, the receding hairline, the blurry vision, the having-to-rely-on- you-for-everything wife, who can't get a tan and might melt if you take her outside...

I mean we seriously need to do a slow clap for Klay here.

Poor guy... that "sickness and in health" thing really did him in.

HA, I'm kidding.
Sorry about that babe. Stop rolling your eyes!

But really though.

I'm already a dried up, pale, can't-see-for-shit ole lady, who can't go anywhere (literally) and whose  only action this past month was with a breathing machine.

Another joke...

But seriously July did suck.

I'm just glad my husband is back so he can make me laugh at all the shitty things we have to go through right now--and so he can cook me dinner.


Lucky to be in love with the guy above,



PS. Finally got a day away. More on that later...

Sunday, July 05, 2015

Getting Wiggy With It + Vlog/Video


Follow my blog with Bloglovin It was hard to lose my hair. Very hard.

I think most people who go through chemo (or maybe more women) wait for the hair to begin to fall out before shaving it. I know some brave folks shave before it falls out and I applaud them for that, because it was something I could not do.

I still had hope buried deep inside that I might just be that one person who actually keeps their hair. My other fear was if I shaved it before it started to fall out it was going to make all of this cancer  stuff more of a reality. The truth was going to slap me and my family in the face. This is really happening; I really have cancer.

There would be no denying it when my bald head became exposed to the world.

I remember waking up the morning it started falling out and finding long strands on my pillow and freaking out. I thought it would take longer for my hair to fall out; it seemed like I had just started my first round of chemo.

I immediately called my sister.


"Britney, my hair is falling out. It's so bad," I cried. 

"Can you brush it to see how bad it is?" she asked.

I obliged and then looked that the hair-filled brush and started crying uncontrollably. 

"It's all coming out...there's so much, there's so much," I sobbed while I texted her a photo.


"I'm on my way," she said. 

This was something I couldn't handle well with anyone else besides my sister. I was still in the hospital so she had to come to me. I think because she has hair and is a woman she totally can empathize with losing my hair. She'd know what to do.

Once she finally got there, she looked at it and said, "I think we should cut it short first to make it easier for you to lose it. And if it continues to fall out this bad tomorrow, then we will shave it, but that way we aren't jumping to extremes.

So we did. We called a nearby hairdresser friend and we cut my hair short. Cameo, the hairdresser-friend, found bald spots on my head that I didn't even know I had, but she covered them up easily with the rest of the hair I had left.

We had a little photo session that night because we knew this was going to be the last time in long time that I'd have hair.

The next day I woke up and strands of now shorter blond hair were covering my clothes. It was raining hair and it was getting annoying. I knew that even though my short 'do' was "short-lived" I had to do it. I had to do it. I had to shave it all off.

But what would Brody say? What would he think? I knew it was very important for him to be there to watch Klay shave my head. Chad, my bro-in-law, shaved Klay's first and then Klay shaved mine.

It was an emotional experience. I tried not to cry. And I didn't. I don't think. I tried to be strong, because if I burst into tears, everyone else would.

Fortunately, it was winter so I had a lot of good hat options to keep my head covered until I was ready to let the world see what I really look like and going through.

It took me a while to want to just go anywhere bald and not care. For a while, I didn't even like the nurses to see. And they're oncology nurses so they are used to having bald patients.

I'll never forget when I walked in my first store with no hat on. I was shopping with my friend Lauren, and it had gotten a little warm for March so I took the hat off. It was too hot to be wearing a winter hat and I just kept it off... And to my surprise it was freeing for me and I was proud of myself.

Of course I get strange looks and stares and hear children whisper, "what's wrong with her? why doesn't she have hair?" And I just ignore them.

I don't look much at people when I'm shopping anymore cause I don't care what they are wearing or how they are dressed so I focus on the shopping part. And I get to ignore the stares that way.

But with the warmer Texas weather, and a few important events to attend in the future, I needed to purchase a wig.

So a couple of great friends, who are more like family, went for a brunch date, popsicle stop and wig shopping with this wig virgin.

It's a weird thing seeing hair on your head again after having no hair for seven months. I'm used to this version of me now--the no hair, no makeup Cass. I don't know if I want to fake it and wear a wig so I don't stand out. But I wanted to at least try some on. Plus I know my hair is going to through some of those funky stages (grow in funny or have bald spots) where I'll have to wear a hat or something to not look completely ridiculous.

So we started trying on wigs...

I honestly didn't know how I was going to feel about the wig-thing. I didn't know if I'd love them or hate them. I thought for sure I'd have fun trying some on and I did. But I didn't think there would be emotions involved. Not just for me but for those who came with me. But there were. I'm just glad I had some wonderful ladies there to support me and make the experience fun!

I know that's a good still-frame in the video below. #dontbejelly


Watch the video and then read the rest...

Klay does look good in that wig though! He looks like Sunshine from "Remember the Titans" lol. What a stud.

And that brown wig I got for free from a cancer resource center. Pretty cool!

Anyway, you guys remind me to keep my head up and keep moving forward. All of your comments, kind words, and just you letting me know that "you're thinking of me" really means a lot!

Thanks for all the support! Love y'all!

And sorry about the ugly-cry face. At least I'm not as bad as Kim K... just saying.


Friday, June 19, 2015

On Pause

I have so many "draft" posts saved in on my blog, it's ridic (p.s. some dictionary folks added that to the dictionary this week, now that's really ridic).

But honestly because I don't feel like computing (LOL) one day so I'll just think "I'll do it later," and the posts just add up.

OR  something else happens medically or to us in our household and I feel like I can never get my head above water to finish a full post for you guys.

Right now, emotionally I feel like I need some purpose--a hobby or a job. I know I can't get a job right now, but I need something to do. Everyone tells me "you need to write a book" and I'm like "about what?"

I just feel useless.

I have no talents--besides birthing cute children--and I know people read this blog, but I need to put time in it and I don't even know where to begin? How do I talk about all that's happened? And what's my angle? I'm sure there are plenty of "cancer books" out there that are probably great reads. But what makes mine different? What makes me and my story so unique?

I'm just struggling with that right now. What to do with my "life"--or right now my "cancer life"--cause it's totally different from normal life.

Will I ever get to a normal life again?

Although this blog gets a lot of attention, I wonder "is because of my sad, cancer story or is it because  I know how to write and they would read cancer or not."

It's hard when I wonder about my future--those "how is it going to end" moments. I need to live and fight for today but it's hard. I have my anxieties and everyone else's on my shoulders about all of this.

Every week is a constant "who is going to help Cass with the kids this week?" Mostly, Actually, ALWAYS it's my mom who stays with me and helps with the kids, but she needs a break.

And then when Klay goes to the Reserves one weekend a month that makes things even harder. Mom's watched the kids at my house with me all week and now she has to help out on the weekends. My sister came and stayed with me one day, all day, but she has kids too and a family she needs to take care of (and my nieces have been sick one week after the next).

The "who's doing what?" game is exhausting. "Who's taking Cass to the hospital? Who's watching the boys? Who's gonna stop and get more formula, more groceries?"

It stresses me out.

So beyond having my head wrapped around when and where and how I'm going to get to my appointments and who's watching the kids... I'm trying to figure out something to do for me.

Because all day, every day in this "cancer-life" I'm wondering about the future. I want to live a life beyond the "C" word. I'm tired of hearing about it and dealing with it.

And it hasn't even been a year yet.

I feel like my life is stagnant--never moving forward.

Sure people tell you, "you will beat this" all the time, but I just don't believe it when they say it. Why? I don't know. I want to. I just kind of look away at the ground and feel awkward. I guess the reason is because no one knows what's going to happen to me. But I have to just believe I will get better.

If I live everyday in fear of what could happen, I'm not really living.

I know this I have two beautiful boys and one handsome husband. And I love them so much.

But all I do is stay cooped up in the house with the kids, of course, and worry. The only time I get out of the house is to go to the doctor. Not exactly living the "good" life.

Ugh.

My life is on pause.
What about having a career?
Or doing something for myself?
I know I have to get better before I can ever think about doing something for me.

Maybe I should get back on my zoloft since I missed a few this weeks cause this post is bumming me out. #oops #depressionmeds

The good thing is, nothing has changed medically. I mean there were a few weeks where I fainted, and I was dizzy a lot and running into walls... I knew the walls were there but I was kind of like "get out of my way, wall" and it didn't move. I was some medicine that was really too much for my system and that's what they think contributed to that. It was pretty scary. I was very unbalanced, couldn't walk a straight line to save my life--not that I could even do that on a good day. My legs, though, they hate me for all of the bumps and falling and whatnot. #bruiseserrywhere

But other than that, I am 100% donor and there are no leukemia blasts in my system, which would mean the transplant is working and I'm cancer free (things could always change).

I'm just hoping it stays that way. I want to get better and be able to do things with my kids (outside of the house). I'm just living a life of fear. I'm scared if I eat the wrong thing, I'll get sick. If I'm around a sick person, I'll get sick. If I go to the store or touch anything in a store, I'll get sick. I don't want to feel like that any more. I just want to live.

One positive note--Orange is the New Black is already on Netflix. I'll binge watch that in two days and then be bored again. LOL.

Today, I'm at the hospital supposed to see the doctor. I found out I have to do these hour-long breathing treatments once a month for a year. And it tastes like shit. FML.


Here's a sneak peek at my next blog--wig shopping or robbing a bank?



Cheers to wearing a small condom on your head,



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...

UNTIL

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. 

FML.

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. 

EFFIN TIRED. 

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.

--THE NEXT DAY--

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,