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.


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,