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...

..............

..............

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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,