Saturday, September 6, 2014

Joy in the Gurney

Duuuuude.  I'm so sorry, you guys.  It just takes a whoooole lot of energy to want to even type at a computer.  I'm not even kidding.  It's been a wild, strange, horrifying, heartbreaking week.

So really, those first 4 or 5 days, I just felt kind of crummy.  I was able to do some stuff, but mainly, I felt like I had the really bad stomach flu.  But then I had (and still have) these moments of calm - two or three hours where I feel like a normal person.  Just a very fleeting time.  So I try to really take advantage of those moments.  Monday night was just one such fleeting time.  Dad asked if I wanted to go to the fair, and I was like, "Oh my gosh, I might....I might actually be able to do that!!"  So we went.

Fair food.  The best reason to go.
 Look at my cute hat.  I felt so like Daisy-Buchanan-at-Coney-Island-ish.
 It looks like my mom is saying the F word here:
Dude, there was this exhibit of bugs, and I took a whole bunch of pictures and sent them to Lex to show to Gage:
Gage has turned me into quite the bug officianado.  I was like, "Whoa, there is a real live Goliath beetle over there!"

I always love to look at the quilts and vote for my favorite.  This was Micah's favorite:
 And mine:
 I got bigger boobs the day after this.  Seriously.  So. Much. Crap. Has. Happened.

We had watched State Fair, the (extremely crappy) musical, the night before, so I was singing, "It's a Grand Night for Singing..." as we went around and around.
 We went on a Ferris Wheel, and Dad was fa-reaking out.  He's scared of heights, like me.
 He was trying to play it cool, but he kept going, "Whoa!  Hahaha!  Whoa!  This is really high!  Haha!"
 Micah conked out on the way home.
While we were sitting there eating our Philly Cheesesteaks, I saw a woman who presumably had cancer near us.  She was wearing a face mask, had no hair, and had a scarf on with a baseball cap over it.  She was in a wheelchair and had an IV running into her body somewhere.  It made me really sad.  For a moment, I was like, "Wait, should I be wearing a mask??" And, foolishly, I thought, "No, she's like 85.  They have to be more careful than I do."

I'm such an idiot.

Two days later, I was in the hospital with a really low white blood cell count.  My dad and I later found out that, during the first week, you should avoid crowds.  Duhhhhh.

I have to take my temperature all the time, and if it hits anything above 100.4, I have to call my oncologist.  I was at 101.something and we had to go to the Reddi Care to get my blood drawn.  They did a really crappy job of accessing my port.  I'm learning that the only people who do a good job of accessing my port are the people who administer the chemo.

Anywho, my count was low, so I was ordered to go to the hospital and get on an antibiotic drip and a whole bunch of other crap.

At first I was like, "Oooh, luxury!  People waiting on me hand and foot!" But it got old really fast.  They did a crappy job of accessing my port (I was like, Ughnnshhhhhhhhuuuuuuh!!!! when they accessed it), and then they said they had to take blood from the other side of my body, too?  I told the phlebotomist that I don't have any lymph nodes in that arm, and I'm told not to have blood pressure taken there, so maybe she shouldn't get blood from that arm??  And she's like, "No, it's fine."  So she ties the tourniquet, like, really loosely, and tries and tries to find a vein.  I was like, "Um, do you need me to tighten that tourniquet thingey?"  She's like, "No, it's tight enough."  And she stuck me in three different places, trying to find a vein.  So I'm on this gurney, and I have this girl sticking my arm on the left, and the lady on my right trying to figure out how to access my port and really, really hurting me, and I just had tears streaming down my face.  What a nightmare.

And all through the night, I was like, "Um, my legs hurt really bad.  Since you're accessing my port, can we get some kind of pain meds into my IV?"  But because they didn't want to bug the on-call doctor (isn't that what on-call doctors are FOR?), they're all, "Here.  Take some Tylenol."  Uh, thanks.  And then I was all, "My stomach hurts so badly.  Can't we do something about that??"  "Here.  Here's a heated up blanket.  You can use it like a heating pad."  And then I was all, "My throat is on FIRE.  Can't we do something about that?"  "Here.  Here are some lozenges for you to suck on."

I mean, I don't know anything about hospitals or nursing or protocol or what, but by the next morning, I was FURIOUS.  Maybe not for a good reason?  I don't know.  I just felt like I was getting really crappy care.  I was ready to walk in my gown, my butt hanging out in the wind, across the street to the other hospital.  For realsies.

And I never once saw my oncologist, the whole two days I was there.  Am I wrong to have expected to see him?  I mean, the main doctor there was keeping tabs on me and apparently keeping the oncologist apprised, but I was like, "Does ANYONE give a rat's ass about me???"

I don't know.  It got better.  I got better nurses.  And I literally told them, when that one nurse was set to be my night nurse again, that I refused to be treated by her.  They assigned her a different wing or a different patient or whatever.  I was so glad.  I just felt like she didn't know what she was doing, and that my needs weren't being met.

I also learned through this whole thing that hydrocodones buzz me.

I come up with my best work when I can't sleep because of hydrocodone buzzing.  I was coming up with the best blog posts, and chuckling to myself at my utter wit.  I came up with ideas for care packages for my family that is all split apart.  I really should have written everything down, because now it's gone... long gone.  Haha!

So, no, it wasn't luxurious.  I spent two days in a gurney.  I was sick of watching TV, sick of reading, sick of talking, sick of not talking, sick of lying down, sick of sitting up...sick of not being allowed ice...  I was basically quarantined.  So anyone who visited had to wear a mask.  And they couldn't allow me ice, because the ice was from tap water.  And no fresh fruit or veggies were allowed in my room.  If anyone had gotten me flowers, I wouldn't have been allowed to keep them in my room.  Just these insane, weird rules for low white blood cell counts.

For someone who is as active as me, being stuck in one room makes me CRAY.  Being forced to lie down constantly is really awful.  I think the mental part of this chemo thing is just as difficult as the physical.

Anyways, I finally broke out of the joint yesterday.  And I felt good for a couple of hours!  So Micah and I had target practice with the nerf gun my cute aunt gave me for when I'm discouraged.  (I love her for that.  And for getting me another body pillow because mine got packed.  There will be body pillows in heaven.  They're very important.)
It was so fun to just sit and play with my son.  I haven't been able to sit and play with my kids for so long.  Maybe this whole situation is to help me understand that I need to simplify my life.  That dinner doesn't need to be amazing.  That it can be something quick so that I can get back to what's important - playing with my kiddos.  That maybe they don't need to be in activities as much as they need to do activities with their folks.  That the house doesn't have to look perfect, as long as I'm giving them the love and one-on-one attention they need.

We also watched Pillow Talk.  Micah looooves Doris Day:
"Mom, her dwesses are sooooo pretty."

I also noticed that I'm officially starting to lose my hair:
After a few hours of feeling normal, I felt like crap again and was reduced to a quivering mass on the bathroom floor for the next several hours.  We got Micah to bed, and I went back and forth from bed to bathroom.  Micah and I share a room.  Micah has been fighting a fever for the last day or so and was tossing and turning and muttering and crying out all night long.  I felt so crappy that I'd just yell from across the room, "Hey, Mike!  Wake up!  Go potty!  You're having a weird dream!"  I couldn't get up to help him.  I felt too weak and too horrible.

This morning, he was tossing and turning and whining, and I yelled, "Hey Mike!  Go tell Grandma she needs to take care of you!  I'm too sick to take care of you!"  So he went upstairs.

I'm starting to have sores in my mouth and throat, and my stomach still hurts all the time.  I think the chemo is making all of the linings of things raw.

Last night was also really emotional for me.  I think the physical toll is starting to cross over into emotional territory.  I found a Pepper dog hair on my sweatpants and held it in my hand for the longest time.  And I cried and cried.  We've lost so much in such a short amount of time.  It's been so devastating.  Sadie is having a hard time making friends.  She and Dylan are latchkey kids.  Dylan is in freakin' middle school.  He is so disorganized.  He's going to flunk out.  Everything they know and love has been ripped from them, and I'm so, so upset for them.  Ben's mom and Ben kind of helped them find kids to walk to school with (the schools are very close to our apartment) and got them a home phone, etc., but I'm just sitting here freaking out.  My babies are out there all alone.  And my Sadie is too shy to make friends, and I can't help her.  I'm trying to find her teacher to e-mail her and ask for her help in Sadie settling in, but I can't find an e-mail for her and nobody answers the phone there.

Sorry.  Emotional vomit.  All over the computer screen.

I know we'll get through this.  It's only 4 months.  That's nothin'.  I can feel crappy for four months if it means I don't ever get cancer again.  And I have seen so many blessings raining down on us through this whole process.  It's miraculous.  I heard a saying today:  "Only in the pitch black of night can you see the stars shining brightest."  Heavenly Father is carrying me through this.  I can feel Him.  I can feel His hand in everything good that has happened.  In all of the little miracles that have happened.  Through it all, I can truly, truly say that I'm very, very grateful to Him and love Him with all my heart.

But I'm going to have rough patches like this, and I think it's inauthentic to pretend they don't exist. Chemo is the devil, but it's necessary to emerge from this and never go back to it again.  So I'll do it.
But I'll probably sob as I go back on the 18th and enter that room.  "Come, let us shoot me up with poison again so I feel like I'm hovering on the brink of death for three weeks."

But I'm 1/5 done.  We can do this.


Mindy H. said...

A few things...

1) You are amazing.
2) You look beautiful sans-hair, like, amazing, doe-eyed gorgeous.
3) What kind of school doesn't answer the freakin' phone or have easy to find emails? I am going to see if there are any professional butt-kickers for hire in that part of Oregon. If so, they need to be sent over to that school to get stuff straitened out.
4)1/5th is a great start! And after next time, you will almost be half way done.
5)Thanks for your truthiness testimony. Both are helpful.
6) I love your guts.

Unknown said...

You don't know me and I don't know if we will ever meet . I was called to teach the 12-14 class in Sunday School and somewhere somehow I was blest to come across your blog page. Your gifts and talents and testimony has blessed my life this past year as well as my 12 kids in class. So thank you for sharing. I got to know and love you this past year as I just had to read your family comings and goings. I loved your honesty and sense of humor. When I read your past few blogs I cried as I shared them with my husband. Tonight as I read I cried again. I have been praying for your health and comfort. And tonight I will pray for your family's load to be lighter. May your days of discomfort fly by swiftly and your moments of joy linger endlessly. God bless you all!

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Kelsey Peterson said...

Hi, I found your blog through pinterest because you created awesome lessons for your sunday school class. I read a few other posts and learned you had cancer. I read a few and honestly I was scared off.
I was scared because my sister has cancer. A weird scary cancer that multiple doctors and cancer clinics don't exactly know what kind. It's scary and heartbreaking. And I while I love that you're honest and upfront about everything with your cancer. I got scared. I didn't want to learn things about what my sister is going through that I CANT DO ANYTHING ABOUT. It's torture which is nothing to say about what she is going through. My coping mechanism is distance. To shut it out. Because it depresses me literally. I can't be a strong supporter to help her be positive and happy because I want to curl up in a bawl and cry.
Anywho I am commenting because I wondered if you can give me advice on how to help her. She has finished her first treatment of chemo and is on a feeding tube. It's miserable and a lot of what you described about being confined and all the crap about white blood count. Is where she is at right now. She is 24, no kids. You'll probably say call her. (I live five hours away, not too bad) but I'm afraid. I'm not strong and I'm angry and depressed. Cancer is yucky and you are awesome I appreciate your blog and I truly am sorry for your continuing struggle and your simple wish to just "not be sick anymore" Love from Nyssa Kelsey

Kar said...

Hey, Nyssa, I just wrote a post addressing your comment. Just hit "home." I hope it helps!!

Merrill said...

Hi Kar: (Is that right?)

I also found your blog as I was googling for a Sunday School topic. I was so excited to find your blog. My wife and I teach the same age group as you, and I used the reader's theatre-type activity you had to teach about the story of Naaman. But I noticed that you have written about your cancer journey. I picked this entry to read because it was shown as one to check out. And I really could relate to many of the things that you wrote. I got leukemia and went through a bone marrow transplant. When you commented about the lady in the face mask, it brought back so many memories of my stay in the hospital, and the months afterward that I had to wear a mask in public. In our ward they still come to me first so that I can partake of the Sacrament before anyone else gets their hands into the dish. Anyway, it's cool that you have a blog. I also started one and it has been very therapeutic. I called mine "My New Marrow." Anyway, thanks for writing. Thanks for the Sunday School ideas. Glad that things are going well for you.


(If you are interested in ready on my blog, it's by invitation only. If you make a comment to reply to this, I will contact you with information.)

Kar said...

Hey, Merrill! I would love to read My New Marrow. Let me know how I can be invited to read! And yes, writing is extremely therapeutic. :)

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