Saturday, December 31, 2011

Happy New Year!!!

Well, not quite, I guess.  However, I doubt I'll be up until midnight tonight after being outside with the kids razor scootering and playing Wii after that.  I'm pretty tired.

I'm not sure what to say about 2011.  Some of it was good, some was not, exciting things happened.  I learned a lot about myself this year.  I guess that's the point of life, right?

Resolutions?  Eh.  I want to keep running.  I want to keep striving to eat in a healthy way.  I want to be a good wife and a good mom.

I'm hopeful that 2012 will be an awesome year!

Thursday, December 29, 2011

Another chemo done

Or do I not get to count it done until I'm disconnected Saturday?  I think since I have tingly fingers on my right hand and quite the angry belly, I'm going to count it.

Pretty uneventful today, overall.  After getting some coffee from S'bucks, I went to the 4th floor for labs.  Very fast, as usual.  The nurse asked if my Eric tattoo was for my son.  Was I supposed to get some symbol that means "husband?"  I don't know.  It's not a big deal.  I still love it.

I stayed on the 4th floor to see the nurse practicioner (my doc is on vacation).  She asks a lot of questions and is very nice to talk to.  She seemed pleased that I'm doing chemo so well.  What can I say?  I'm good at chemo.  Blood numbers are fine, mouth is fine, everything sounds fine.  She sent me on my way to the chemo lounge.

It was kind of crowded, so I ended up sitting near some people.  Two couples started up a conversation, and when I heard that one of the men had a long chemo today, I butted right in thinking maybe he had colorectal cancer.  It was bone cancer.  The woman in the other couple has breast cancer.  It was noted that I'm kind of young to be in the chemo waiting room.  I explained my deal and got murmurs and "the face."  Then it got more interesting because they all started talking about the olden days of the Vietnam war.  It was a nice way to pass the time. 

I got called back by a little tiny nurse.  She was very sweet, but kept struggling with the curtains and my chemo tower.  She heated up my lunch and it was actually hot.  And she told me to help myself to the water.  I appreciate that.  I'm not an invalid.  I can get my own water (and juice, lots of grape juice).  I forgot my turtlepod, so I listened to Hugh Laurie's cd on my phone for a while.  I busted out Daria and watched that until Eric and the kids bounded in to rescue me.

I mostly feel very tired.  Tingly fingers.  Room temperature water is too cold.  My belly is angry.  It's kind of a drag.

However.  The sun was shining today.  It wasn't so cold this afternoon that I had to wear gloves like a big dork.  I drank a lot of ice water until the oxy kicked in.  My smiling laughing kids perked me up.  I took a little nap when I got home.  I wrote several letters THAT I PROMISE TO MAIL SOON.  I wrote in my prayer journal for a long time and my hand didn't even get tired.  This evening I laid on my bed and read a book (thank you, Eric).  There is sweet tea on the counter just for me (thank you again, Eric!).  I'm able to easily walk to and from the bathroom at the cancer center (and elsewhere).  I met some cool people today.  Coffee was great!  I felt more peace today (thank you, God). 

Sometimes I can't believe how blessed I am, how blessed our family is.  There was a time when I thought things could be better, that we could have more, that we could be happier.  I didn't see the blessings around me at all.  I don't think God gave me cancer.  This is an imperfect world, and that's why cancer exists.  There's a reason He allowed it to happen.  I think the reasons are starting to be revealed to me.  Not to be all churchy on you, but finally seeing the blessings in everyday life is pretty awesome.

The plan for the next few days?  Relaxing.  Keeping my fingers warm.  Ringing in the New Year in a quiet, peaceful way.

I really appreciate everyone's prayers and thoughts. :)

Monday, December 26, 2011

Merry Christmas, Y'all.

Yeah, I'm a day late.  What of it?  Heh.

Our Christmas was very nice.  I cooked delicious vegan foods, we skyped with family, gifts were opened, candle light service at church attended, caramels made (thank you, Eric!).  I love how our holidays are spent in unique ways, and yes, I consider chillin' at home a unique way.

Can you believe that around this time two years ago I was freaking out about abdomino-perineal resection surgery?  When I talk about surgery or treatments, wound vacs and pumps, it just seems so long ago.  Years and year ago.  It's weird.  I often wonder what is in store for me in the next two years.  I'm sure it will be exciting.  :) 

I have chemo this Thursday.  It's a little bit easier to deal with since it seems the drugs are working.  I still get anxious though.  Got some prayers?  I'll take 'em.

Tuesday, December 20, 2011

I popped into the wound care clinic today.  Last time, if you recall, I was given some gauze with silver and other stuff in it to promote healing.  That gauze also increased the discharge from my butt which in turn irritated the skin and made me cranky.  I went back to the iodoform.  Smelly discharge and ouchy butt?  Uh, no thanks.

I explained to the nurse that I just want the wound to stay clean (ie not smelly), and I want something easy that doesn't remind me all the time that I have a wound.  One of the things I mentioned was that I'm pretty sure this wound isn't going to heal, I can't stop chemo so I can have a surgical correction, and for me this is a quality of life issue.  The nurse looked sad.  I guess she doesn't hear many 34 year old patients candidly speaking about this kind of thing. 

The doctor came in and I explained the same thing to him.  He seems to want to DO something for me, so I have another kind of gauze to try.  No big deal, I'll try it.  Then he mentioned wanting to see me in 2-3 weeks.  I nipped that nonsense in the bud, man, politely explaining that I have chemo every other week, and I don't want to spend my off weeks at appointments.  I want to spend them with my kids, teaching them, experiencing things with them.  I assured him I would call if I had any issues.  So I got away with an appointment in four weeks. 

Adventures in rectal wounds.  Who would have thought that this is where I would be in my 34th year? 

I'm glad I can pretty much put the rectal wound aside for a handful of weeks so I can focus on more important things.

Monday, December 19, 2011

Christmas is when??

You know what really bugs me about cancer?  The amount of time it sucks up.  I'm sure I've whined about this before, but with Christmas a few days away, wow, it's really right in my face.  When I sat around sick this weekend, I thought about things I'd like to sew for gifts.  I thought about the presents already purchased that never made it to the post office.  Christmas cards?  What WHAT?  Yeah, those didn't get done either.  I even scrambled to pull together a little birthday party for Reese.

I don't know, I'm just feeling like a big flake today.  It's going to be after-Christmas gifts again this year.  I wish I could get it together.

I was thinking about things we haven't done this season, like decorating cookies, or even decorating a tree. 

But you know what?  We got to visit with my parents and had a great dinner together.  We took time to visit friends who are in town that we've missed so much.  Eric, the kids, and I wandered around the mall looking at decorations. 

I suppose it continues to be about balance and priorities.  And knowing what I can and can't do.  It's hard though. 

Oh well.  The gifts will get mailed, eventually.  We can make cookies and frost them any old time.  Our family is going to be together, and we're thankful for the blessings we have.  And I'm going to try not to be too hard on myself.

Thursday, December 15, 2011

A brief update

and it's good freaking news!!!!  My tumors are stable, y'all. 

When the doctor told me, I cried.
I cried with the nurse.
Two friends of mine came to the waiting room to visit me, and I cried with them.
I cried when I texted Eric.
I cried when I emailed my mom.

What an overwhelming feeling.  A feeling that prayers have been answered.  A feeling that the work I'm to do here isn't nearly done yet.  I have been praying for an accepting heart and spirit, that whatever happens, I want to feel peace.

Aside from my good news, the day was uneventful.  I'll be continuing with the chemo I've been on for the least three treatments.  It's hard, but I have a lot of support. 

I am grateful for all the people who have prayed for me. Whether you did it one time or every day, thank you. Thank you.

CT Scan #what?

I have completely lost track of how many CT scans I have had.  I realized this when one of the techs asked me if I have had a CT before.  But let me back up.

The barium was in two shot like containers this time.  How nice!  Vanilla, but I suspect that's the only flavor they have.  I was to chug one bottle at 12:20 and one at 12:50 and then be at the radiology office by 1pm.  I want to note that I drank the second bottle at a red light and I meant to remember the street, but guess what?  I forgot.  Hah.

I arrived to radiology with a rumbly tummy because no eating or drinking after 8:20am.  I signed in two minutes late.  I blame the parking garage.  The receptionist directed me to have a seat.  After waiting for a really long time, a tech came out all ready to give me more barium.

"I already drank my barium," I said.
Confused look, "You did?  When?"
"At 12:20 AND 12:50," I answered.
"You drank it today?"
"Yes, I'm all set."

Apparently the radiology department doesn't communicate very well.

So he took me back and I had to change into a gown.  What WHAT?  I grumble but follow directions.  During the changing I totally had flashbacks to my radiation treatments.  I remembered how I felt taking off my pants and shoes, how it felt to walk down the cold hallway to the radiation room, how crummy radiation was.  It was weird to think about after all this time.

In the scan room, I, of course, knew what to do.  Sign your life away.  Lay on the table, feet up.  Arms over your head.  The tech who did my IV was WAY better than whoever did it last time.  They asked if I was okay.  YES I'm okay, I think, I'm in the zone.  I'm praying.  I'm thinking about my family and trying not to cry.  Why do they think I'm having a CT scan, for fun?  I'm sure they were just trying to make me comfortable.  "You know to breathe when the machine tells you?"  YES.  Hold your breath.  BREATHE!  I didn't open my eyes at all this time.

Anyway, it was over in less than 10 minutes.  I changed my clothes and got the heck out of there.  I had to take Reese to art class, for goodness' sakes! 

I'm supposed to get the results today.  I feel...nervous.  Scared.  Tired.  But hopeful.

Please pray.

Sunday, December 11, 2011

Good times!

Thanks to my mom and dad for visiting.  It's going to be hard to let you go next week!!!!

Tuesday, December 6, 2011

Wound Care!

"Wow, you have really been through the ringer!"

Why yes, Wound Care Doctor, I guess I have.  Thank you for pointing it out to me though...

The kids and I hustled out the door this morning at a much earlier time than we are used to so I could stop by the wound care clinic and have the doc there check out my rectal wound.  The nurse got to hear a recap of my entire journey.  She looked at my wound.  The doc came in and looked at my wound.  He wants me to use a different kind of packing gauze that has silver in it (and some other healthy junk for my wound), with the hope that the fistula/wound will heal up some.  The good news?  This gauze only has to be changed every three days.  And I was happy about that.

Isn't that weird?  I was laying on the exam table listening to the kids happily playing, thinking about how I got to where I am.  Sometimes I stop and think that this is the craziest thing ever, this whole cancer thing.

Anyhow, the doc seemed overall not worried about the wound.  It's not bothering me, it's not weeping scary fluids.  When I balked at showing up at the wound care clinic frequently, he said he could see me in two weeks.  After all, I don't want to spend a bunch of time in clinics.  Neither do my kids.  Next time we'll bring some schoolwork.  ;)

I was stressed out about going to the wound care clinic, but I'm glad I did.

My parents are coming to visit for a week, I'll try to post some pictures.  Give your friends and family big hugs, y'all.  Tell them you love them.  And you know, pray.

Sunday, December 4, 2011

Forget your steroids and you will be sorry

Really.  Because on Day 3, which was Saturday, the first day I'm supposed to take a steriod pill, I was pretty miserable.  Blech.  I slept a big chunk of the day.  It just wasn't a very good day. 

I realized my mistake though and Eric said I looked a lot better today.  I still feel tired and achy, but we were able to make it to Sunday School and church. 

Not a whole lot else to report.  I've been eating rice noodles most of the weekend as they seem to agree with me. 

I'm looking forward to feeling better in a day or two!

Friday, December 2, 2011

Huh. I mean, Yay!

I feel kind of...good.  For it being the day after chemo, I wasn't nauseous at all.  Food doesn't taste totally weird.  Not much of an appetite, but I can live with that.

I felt so different than I did the last two times that I emailed my doc's nurse to ask if she would make sure I got all the chemo I'm supposed to get.  I feel a little silly asking about it, but it happened once in Columbus.  The cold sensitivity is here and bad enough that I refused to hold the kids' drinks today.  I do feel tired.  Getting the nausea under control was obviously a big deal.

Well, we'll see how I feel after the pump is disconnected tomorrow.  I'm very thankful that I felt good enough today to get out and meet some friends and finish up some school work with the kids this afternoon.  Very thankful.

Thursday, December 1, 2011

You get a 2 for 1 today!

Because I still want to tell you about my day.  I arrived at the cancer center with enough time to get a coffee.  When I got to the lab a very cheerful lady checked me in, and complimented me on the picture on my credit card (it's the family pic with Richard Blais).  When she asked if it was my family, I guess I missed my chance to claim Blais as a Jahner, but I explained who that he's a chef out of Atlanta.  The check-in lady said, "Oh, we're going to Atlanta!"  I suggested that if she liked burgers, she should check out Flip.  She sounded excited to have a recommendation.

The blood people called me back right away.  I swear it took less than five minutes for them to collect their blood.  Shocking and cool.

My doc was out today, so I saw his nurse practicioner.  She was very nice and asked way more questions than the doctor usually does.  She asked about mouth sores (I don't have any) and asked if I was using the mouth wash with salt and baking soda (I'm not).  She gave me the recipe but it sounds kind of gross.  Since the doc's nurse wasn't there, I had to explain about my nausea patches.  She told me to find out if my insurance would cover it.  I didn't know how to do that, so she sent me to the pharmacy.

The pharmacy lady acted like she wanted to do just about anything except figure out what the deal is with my nausea patches.  Then she found a coupon for them and redeemed herself.  Maybe she was just feeling stressed.  I know I was.

Finally I was able to check in with the chemo waiting room ladies.  I sat down, pulled my kindle out of my awesome sushi bag, and started to read.  A few minutes later, the two people who helped me transfer from Columbus to Baylor popped in to talk.  It was so nice!!!  They wanted to know how we were settling in and if we'd started to get to know people.  One of them asked what I did with my days, and I reminded them that I homeschool. 

We talked about that for a little bit, me explaining how we structure our day and how awesome the kids are doing academically.  I got the question I'm not a big fan of:  "Do you plan to homeschool them through high school?"  I won't lie, I teared right up and said it was my hope to be teaching them and get them through high school (with whatever educational method or system works for us).  It is, in fact, my biggest hope, my biggest wish, to see my children through high school.  My two friends assured me that I would, but what else would one say?  "Oh yeah, you're not going to make that."  They were very positive and kind.  I don't think I've said that stuff out loud to anyone, maybe not even Eric.  It's hard.

Back in the chemo lounge, I was able to talk to the doc's nurse about my nausea patch.  She said it was up to me how to handle the situation since my insurance company will shell out the $$ for 4 patches instead of only 2 like we thought.  I can either put the patch on the day before chemo, or I can take a kytril pill and put the patch on the morning of chemo.  Today went so well on the nausea front that I'm nervous about changing it up.  My blood work has been consistently good since I started the Neulasta again, so I doubt I'd have to worry about wasting a patch if I put it on the night before. 

Anyway, no puking today.  I was soooooooo glad.  It was quite an uneventful chemo.  I took a little nap and watched Daria.  Soup for lunch, and I found the juice hoard in the refreshment room. 

Right now I feel tired, but other than that, I'm okay.  Thank God.  Really.

After my disconnect on Saturday, the next big thing is an appointment with the wound care people.  Not really looking forward to some stranger poking and prodding in my butt.  Blah. 

Please pray for me this weekend.  Thank you.

1000 Origami Turtles

An unexpected box arrived in the mail yesterday.  I told myself I should make dinner THEN open it, but my curiosity got the best of me, so I opened it.  I pulled out a wrapped up something, realized it was a beautiful lap quilt, and promptly the tears started rolling.

I put the rest of the package aside and cried while making dinner.  It's not the first time, and probably not the last.  Sniffle, sniffle, cook cook.  When dinner was under control, I grabbed up the package and quilt and retreated to my room.  It really upsets Reese if I cry.

I showed Eric the package.  He probably thought I was a little crazy for as much as I was crying.  Let me try to explain.  I love it.  I'm in awe of this quilt.  I feel that way about all the surprises I've ever gotten from friends or family.  I get overwhelmed by the love and generosity shown by others.  I think I don't deserve it, that I'm not the strong woman people think they see when they look at me and hear my story. 

My dear friend also made me two wristlets with the origami turtle fabric that SHE FREAKING DESIGNED.  And I got scraps.  How cool is that?  There are patches on the front with the colorectal blue ribbon.  The back is a super soft minkey.  It's something that should be displayed in some museum, along with so many other gifts I've received.  But don't worry, I'll use it like crazy!

I know I haven't done a blog post for every gift I've been given.  I feel bad about that because I love every thing I've ever gotten.  I've saved postcards, I have several beautiful shawls.  There's another turtle lap quilt, and who could forget my Kindle?  There are little things, tea, a tea wallet, a wooden cross from two girls I adore.  There's an eagle pin from my Grandma.  Letters and cards.  I've saved it all.  I hope someday the kids will be able to go through my stuff and see how much love has come from this shitty situation.

I want to pay this all forward, the kindness and generosity.  I hope I can.

Thank you so much, Becca and your mom.  Thank you for your prayers.