Showing posts with label aml survivor. Show all posts
Showing posts with label aml survivor. Show all posts

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...