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.

Monday, November 28, 2011

Shhhhhhh...it's a secret!!!!

That's how I feel about cancer sometimes, like I don't want to tell anyone.  Let's be honest.  When someone first hears, no matter what, they get THAT FACE.  Readers with cancer, you totally know what I'm talking about.  It's not a bad thing, it's almost always a face of sadness, compassion, etc.  No one means any harm by it.  But man, it's not a face I like seeing all the time. 

So our family has been going to a church here in Dallas, and we really like it.  Reese goes to Sunday School and for the first handful of times, she wanted me to sit in the class with her.  Okay, no big deal.  Her teacher is soooooo nice, and it was fun to get some ideas from her.  You know how I love teacher stuff.  Around the same time, I decided not to go to a Tuesday night Bible study I'd been attending, so I wanted to find something for me.  Reese wanted me to stay close, and I happened to wander into one of the study groups that meets right down the hall from Reese. 

The first Sunday I attended the study, I talked to a lot of people and they were so friendly and kind.  One of the women, Janice, shared with the group that one of the members had surgery and didn't tell anyone.  Janice looked sad and frustrated and said, "We can't minister to people if they don't share their struggles."

What she said stuck with me all week.  It's true.  I'm a smart cookie, I know I need prayer.  So yesterday I pulled Janice aside and shared with her what's going on with me.  It turns out, she's a one year survivor of breast cancer.  I can't imagine a more perfect person to tell.  She helped me share with the study group and ask for prayers. 

Then right after that in church, the pastor talked about different jobs in the church.  Some people are teachers, some people are learners, and some people need to be ministered to (among other jobs).  My willingness to share my struggles gives others a chance to minister to me.  Isn't it kind of cool how things work out?

Thursday, November 24, 2011

Thankful

Yeah, that's right, I'm freaking thankful.  One thing about cancer, it really smacks you in the face and makes you see what you DO have.  At least in my life it has.  So on this Thanksgiving Day, while I wait for the pecan pie to be done so I can go for a run, a list.

Eric
my children
family and friends
awesome apartment in awesome Dallas
doctors and nurses who care
delicious vegan foods
the ability to run
empathy
love
happiness
challenges
laughter
faith
my favorite coffee mug
memories

There's a ton of other stuff.  I can't believe sometimes how fortunate our family really is.  I try to remember things like this every day, especially when days are hard. 

Family and friends, near and far, my family and I are so thankful for your love and support and prayers.

Happy Thanksgiving, y'all!

Saturday, November 19, 2011

Hanging in There

Today wasn't nearly as bad as last Chemo Saturday.  I was able to do some stuff with the fam this morning before I got disconnected.  My blood pressure was good.  I came home and ate some stuffing.  I'm still puke free (although it was close while driving around downtown Dallas right after disconnect).  So.  The patch and steriods seem to be helping.  If the doc can figure out a way to keep me from puking during that first day of chemo, I'm golden.

I'm so so thankful for feeling good.

Some sad news though today.  Someone I knew on colonclub, jmarie, passed away.  She was young.  She has a 3 year old daughter, a husband, friends, family.  Please send a prayer their way.  I didn't know her well, but I so admire her strength. 

Sigh.  Stupid cancer.

Friday, November 18, 2011

A no Puke Day!

I didn't puke at all today.  Just wanted to update on that. 

Otherwise the day was full of tv watching (some educational, some not), relaxing, Wii playing, napping.  I'm exhausted.  Tomorrow I get this pump off.

Chemo weekend...blech.

My Chemo Day

I will tell you about it, but it involves puking.  A lot of puking.  You've been warned.

Let's see.  Eric dropped me off at the cancer center at about 9:15ish, just in time to get some coffee.  There was no line at the checkin desk, score!  A few minutes after I sat down, I was called back to get my labs done.  The nurse was quick and efficient, but I think I prefer the jokey kinds who ask about my tattoos.  After that, I went down to the chemo lounge waiting room to, of course, WAIT to see my doctor.  I didn't mind a whole lot because I found a book on my Kindle that I haven't read and it turned out to be a good one.  Yay!

On the way back to the doc's office, another nurse weighed me.  This chemo diet is NOT working, y'all.  Ugh.

My doc's nurse came in and we chatted about how awful my post chemo days were last time.  I'm already using the top of the line nausea drugs, so the only thing we can do is switch some of them up, and I can take steroids for a couple days.  Just like long long ago when I first had chemo in WI, it's a guessing game.  Bummer for me, huh?

The doc breezed in and we chatted about nausea some.  He agreed with what the nurse suggested.  He asked me if I had any other questions, and I said I did.  I asked about tattoos, ready for him to be all negative and discouraging.  He was all, "Oh, sure, that's fine!"  And I replied, "Really?  Last time my tattoo got a huge rash all over it."  He asked to see it, complimented it highly, and gave me the Clean Needle Speech.  I mentioned that my last doc wanted me to take antibiotics before and after, and current doc scoffed at that.  Whoo hooo!  Cleared for tattoos!!!!

After getting some prescriptions, I went back to the waiting room.  You have to be really good at waiting in this cancer business.  While in the waiting room, I saw a family with three adorable little girls and was so thankful that kids are welcome at the center.

I had the same chemo nurse (are you keeping count of all the nurses I've been through today?  I should have a contest or something, haha) as last time.  He's not jokey or funny, but he does answer questions and he's nice.  I had to ask for Ativan again.  He goes, kind of doubtfully, "Do you need it?"  Don't ask me if I need to relax, jerk.  You're going to pump me full of chemicals that will make me sick for my whole weekend, I've been pretty much a mess for the last two days, didn't sleep much last night, and you're going to ask me that??  I just smiled sweetly and said, "Yes, I do."  He had to clear it with the chemo doc's nurse.  Okay, whatever you have to do.  I huddled under my warm blanket and turned on the massage option (which isn't as great as I previously thought...it gives me a headache if on too long, but it's nice to goof around with when I'm bored).

I got my Ativan.  And chemo doc's nurse added it to my regimen.  Another Whooo hooo for the day!  It's the simple things.

Warning!  Puke talk ahead!!!!!

I was able to relax and listen to a little music.  I watched a little Daria.  The day plodded on, switching a bag here, having a snack there.  Nothing too exciting until about the last half hour.  I started feeling sicky.  I glanced around for a garbage can.  The dvd player went back in my bag.  I sat on the edge of my chair, garbage can pulled close.  Dammit, I hate puking.  I sat still, took deep breaths, and no matter what I did, I tossed my cookies into the garbage can.  Everything I'd eaten came up.  Soooooo gross.  The nurse came over and asked, "Are you okay?"  In between heaves I said, "Not really."  He rushed away and brought back some ATIVAN.  Ahahahahahahahhaha.  This amuses me greatly.  I puked until I thought I was done, then accepted a box of kleenexes. 

Just then, Eric and the kids arrived.  I joked that I'd need Reese's puke bucket.  The nurse offered me one of theirs.  I'm glad I had it, because I heaved into it a couple times on the way home.

Once at home, I went right to bed and slept for a couple hours, I think.  I woke up still feeling nauseous, so I sat in my chair with a bucket.  After a little while I decided to try eating some toast, thinking that maybe I just needed food in mah belly.  The toast came up.  I was able to drink water though.  A while after that, Eric kindly made me some cream of wheat.  I took one bite.  ONE.  And that came up.  I decided to give up eating for the evening and went to bed.

Today my dilemma is what to try eating.  I don't really want to puke up my favorite foods or my stand by chemo foods.  Sigh.  If I can't keep any food down in the next couple hours, I'll be calling the chemo doc's nurse.

Right now I feel okay, maybe a little shaky and a little tired.  Water is still agreeable. 

Anyway, today I'll try to relax, do some school with the kids, and if I'm feeling okay this afternoon, we're headed to the library.  That's a good place to take the kids because it keeps them busy and changes the scenery.

Please pray for me.  :)

Monday, November 7, 2011

I made it!

Guys, my weekend was mostly HORRIBLE.  I was nauseous and tired and my head hurt.  I don't even really remember what we did on Saturday afternoon.  For me, I think it involved sleeping.  I thought I was going to puke several times.  I can't remember the last time I felt so awful.

And today?  It's like someone flipped a switch.  Aside from feeling a bit tired and craving mushroom gravy, I think I'm fine.  And I made it.  I made it through the weekend.  It amazes me to be on the other side, but here I am!  I don't take the credit.  There was a lot of prayer involved, both my own and yours. 

The best part of my weekend was little things.  A letter from a friend reminding me I'm not alone.  Going to church with the family.  Watching Daria in bed.  Buttered toast.  Ice water.  Hugs from my kids.  Gentle kisses from my husband.

It's really all about the little things, isn't it?  Finding joy in the little things.

Other than calling the scheduler to find out when I'm supposed to show up next time, I plan to banish cancer to the back burner for the next week or so.  Today I'll be catching up, so if I owe you an email or a phone call or a picture, I'll get on it.  I hope to do some sewing.  The kids and I will be working hard on our school week.  Lots to do.  :)

Friday, November 4, 2011

They put me in the room with the hood again.

"Is this room okay?  Some people get a little anxious in here, but it's mostly just used for storage," says the helpful nurse.

Yeah, yeah, whatever.  I'm sure all the biohazard signs and the medical hood put everyone at ease.  Seriously, I don't care.  It was a fun picture op once I got bored of WAITING.  I did chat with my doc, who seems concerned about my rectal wound.  Apparently the Avastin could cause the wound to open more, and then he would want to stop chemo until it heals.  I explained that it has never been healed.  He said we'll wait and see what happens.  I asked again for a referral to a wound care nurse (and an ostomy nurse) because I think whatever the wound care nurse has to say might put the doc's mind at ease.  At this point, I really doubt that this bugger is healing.

Then I waited and waited for the doc's nurse.  At one point I opened the exam room door because I was kind of lonely.  The doc breezed by, then poked his head in and asked if his nurse had been by.  No, no, she hadn't, which is why I'm still here.

I talked to the nurse who said she would get the social worker to help me with the whole wound care thing.  Waiting, waiting...and please note that I really had to pee because usually the lab wants a urine sample so I chugged a cup of coffee, and well, you know.  I snuck out to the bathroom, and while I was in there, I heard voices looking for me.  A woman was hovering around Exam Room 2 and I said cheerfully, "That's me!"

We talked about what my needs are (wound care nurse/ostomy nurse).  She also had information about a support group for the kids.  I'll check it out, but I'm kind of sad that the name had "cancer" in it.  It's called Cancer Support Community.  What, that's the best name they could come up with?  Anyhoo, I'll look it up and see if it's something we can use. 

Then I headed to the chemo lounge.  That whole experience was pretty uneventful.  I asked for the ativan to help me calm down.  No problem there, and I was able to relax and take a nap. 

At pump connect time, the nurse handed me the bottom part of a pump and a bag with chemo liquid in it.  "What's the deal with this?" I asked.  "Oh, your dose is too big for the canister, so we use this bag."

Oh really?  I then asked how I get a real pump, and the nurse admitted that about 1 in 5 patients get this set up.  I eyed the bag and asked how strong it was.  He goes, "Oh it's pretty strong."  I was exhausted and not thinking, but later I thought that this set up is probably not the best for a mama with two active kids.  No, we haven't had issues with the pump or the tubing, I'm careful.  But I'd feel a lot better with a pump where the chemo liquid is safely in a canister and not in a bag.  I'll be hassling someone about this.

Cold sensitivity started right away.  Blah.  I know it could be worse.

I'm tired, but these kids need to get out of the house.  We're headed to the library so I can sit down and they can do kid things.  I'm hoping that new books will keep them busy this afternoon.

Prayers and positive thoughts gladly accepted!

Thursday, November 3, 2011

Well hello, 4am!

That's right.  My eyes popped open a little after 4am despite the fact that I took a sleeping pill around 11pm.  Ugh.  Good thing chemo usually involves a nap.

The kids and I had a busy day yesterday, cleaning and cooking.  No one will starve this weekend while I'm sick, haha.  Not that they would anyway.  Eric is awesome about taking care of all of us when I'm not feeling my best.  I try to make it easier if I can.

I'm going to try to lay down and get another hour or so of sleep now.  Prayers are definitely appreciated today, both that my white counts have recovered enough for chemo and that I can bounce back quickly from this treatment.

Monday, October 31, 2011

Today is Bean Day

AKA the day I totally freak out and frantically make food.  I cooked some chickpeas in the pressure cooker and made a bunch of lentils.  Lentil burgers tonight, lentil filling for some tamales, chickpea cutlets, and hummus.  I'm also pondering a soup for Friday.

I washed clothes, changed the sheets, cleaned in the kitchen...anxiety about chemo makes me very productive!

I am trying not to worry, I really really am.  I'm trying to prioritize, find balance.  Today hasn't been that much of a balanced day.  We'll see how the afternoon goes.  I either feel like doing all the things or none of the things.  Neither one is an ideal situation.

Thursday, October 27, 2011

What was I expecting?

I don't know, a good scan?  Not for me, not today anyway.

We are not talking HUGE growth, but there is growth.  The metastasis that were there are slightly bigger (for example, the biggest one was 1.5 cm x 1.4 cm and is now 2.2cm x 1.9cm).  My liver (and other organs) are clear. 

I cried. 

The doc wants me to start on FOLFOX and Avastin, but not today.  My white count was too low.  So I start the somewhat new stuff next week.  I've had FOLFOX before, but it's been a long time.  The doctor seems confident, or at least was good at faking it, and said if this cocktail doesn't work, there are other drugs.

I didn't want to do FOLFOX again.  The only glimmer of good is that it's been a long time and the last time was right after surgery.  I'm a lot stronger physically now.  Maybe it will be easier.

Stupid cancer.

In other news, I'm going to be referred to a wound/ostomy nurse because I have a fistula.  I can't remember if I mentioned that here, but it's an rectal/vaginal fistula, the kind that would be dripping poop out of my vag if I didn't have an ostomy.  Yet another reason to thank my ostomy?  Definitely.  The fistula isn't bothering me, it's just there.  We'll see what the wound/ostomy nurse has to say.

So next week we'll try for chemo again.  More good news?  If I stay on schedule with chemo until December, I'll be off both for Thanksgiving and for my parents' visit in December.

After the appointment, Eric took me to buy new running shoes.  It made me feel a little better.

When I get these crappy scan results, all I can think of is Eric and the kids.  And what our future might look like.  That's what really makes me cry. 

I came home and played some Mario with Eli, and then herded the kids into the homeschool room to do a little non-media activities.  Reese and Eli force me to concentrate on them, and then I don't think so much about the state of my lungs.  I'm thinking about a run in my new running shoes in a little bit, and since I have another week off chemo, I have a special sewing project to bust out. 

I'm okay in my head, for the most part.  I'm not done yet.  ;)

Now I'm off to think good thoughts and pray.  I'd love it if you did the same.

Wednesday, October 26, 2011

CT Scan day! And some spiritual ramblings

It went fine.  I only had to drink one bottle of barium, about which my guts are very happy.  Instead of nothing by mouth after midnight, I was given until 5am to drink water.  I chugged a couple glasses at about 3am, by the way.  In the waiting room, I sat all of three minutes before being called back. 

The nurse had a little trouble getting the IV in...but sometimes my veins are finicky.  No big deal. 

A good friend hung out by the cafe with the kids, and we didn't get lost in the parking ramp.  Overall, it was a nice experience. 

I wish this all was a nice experience mentally.  It's not.  Inside myself, I've been a wreck since probably last Friday.  Finally on Sunday Eric asked me if I was worried about the scan.  Can you believe I didn't connect my anxiety to the scan until that moment?  There's probably some anxiety about chemo tomorrow too.  I've been running again regularly, that helps.  I've been praying too, asking for help to be strong and positive. 

I cried all through church last week.  It's very hard for me to believe that God loves me as much as he does when I'm going through something so shitty.  Sometimes (okay, often) I think I must not have enough faith.  My rabbi friend Brian from Columbus told me that all I need is faith the size of a mustard seed.  That's all?  I can do that.  I believe there's a plan, I just don't get to know how it ends.  I struggle with this.  I'm the person who will read the last chapter of the book to find out how it ends (Harry Potter and the Deathly Hallows, I'm talking about you).  I do know that when I go to church, when I go to a Bible study, when I read and pray on my own, I feel more peaceful.  Since I need to feel peaceful so I don't totally freak out, I'll keep doing what I'm doing.

I didn't intend to get all religious on your asses, just wanted to share what's in my head lately.  It's a progress, faith and religion. 

So the plan today is to get ready for chemo tomorrow.  I'm going to throw some veg chili together for the crockpot, take a trip to the post office, try to get out for another run today or tomorrow morning.  School my children (we've been at it for ten weeks so far...awesome!!).  Maybe finish a couple little sewing projects.

Your prayers and positive thoughts are, as always, much appreciated.  After I see the doc tomorrow, I'll report back!

Tuesday, October 18, 2011

My Weekend and Finding Joy

I have a couple pregnant friends, and this weekend I think I could really relate to their experiences with morning sickness.  Blech.  Eric asked me if my nausea was worse than normal, but I think the issue was my month off.  I'm sure the roast I threw in the crockpot in an attempt to care for and feed my family didn't help.  The whole apartment smelled like meat for two days.  Double Blech.  Oh well, you live, you learn, right?

One of the things I struggle with on chemo weekends is sliding down into the dark.  Feeling sorry for myself.  Getting grumpy.  Woe is me.  Two things helped me this past weekend.  Thing #1:  Eric, the kids, and I took a walk on Saturday afternoon.  Fresh air was a plus, but getting outside reminded me that the world is bigger than me.  As we walked by the lake, I was able to get past myself and think about the beauty of the evening, the birds, the water.  It was nice.

Thing #2:  Reese and I walked down the street to a new church on Sunday.  The sermon was about joy.  Finding joy in life even when going through difficult circumstances.  If Paul, locked up in jail, could find joy, I think I can too.  It's not easy, and I hope, reader, that you don't think I'm preaching to you.  Everyone is in a different place.  I did sad, I did angry, and sometimes I still feel those things.  For me, it's time to move on.  I have so many things that I'm thankful for, so many things that bring me joy.  Part of fighting, for me, is finding joy.  I'm tough, I don't have to wallow in the dark when I have a choice to find light. 

I was still dragging on Monday, but this morning I feel much better.  I'm going to try to get out and run today. 

Thank you for all the prayers and thoughts over the past couple weeks.  Change is hard for me, but it was all a lot easier knowing that people were thinking about me.

Have a great week!!!

Saturday, October 15, 2011

Chemo update

Yesterday started out pretty normal for our family.  The kids and I worked on some schooly things (note to self...figure out a way to deter Reese from complaining and Eli from rushing through his work).  Eric popped home around 11ish.  At noon, we headed to the cancer center.

Eric dropped me off.  I think that's one of the saddest parts of my day.  I don't mind chillin' in the infusion room alone, I'm probably very boring with my kindle reading, Daria watching, ice water drinking ways. 

Anyway, I went into the lobby and must have looked like I knew what I was doing because the greeters kept their distance.  Up in the elevator to level 4 to get some labs.  A very energetic, funny guy was my blood drawer.  He first handed me a pee cup, and when I looked at him with what must have been surprise, he started explaining how to use a pee cup.  Had I not been through all I've been through in my life, I might have been mortfied.  I said, "Well, I don't really have to go right now."  "I'll get you some water then!" he replied cheerfully, and brought two cups of water over.  "Cheers!" he was energetic, I mentioned that?  I noticed he didn't have a port kit, and when I asked him, he said I could go downstairs and they would pull my labs, but it would take longer and besides, he's way better at it.

Turns out he was right.  I barely felt anything.  He explained everything he was doing, even telling me tidbits of information like how long it would take to run each test, and he showed me how he makes a blood slide and it's a much easier way to count red cells or white cells or whatever (chemo brain!!).  He assured me everyone was great, but I could request him if I wanted.

After that, I went to drink more water, then hung around a bathroom I thought was occupied.  Finally I knocked and tried the handle.  Empty.  Ugh.  So embarassing.  Would it be hard to leave the door opena  crack, people who are leaving the bathroom??

I turned in my pee cup and went down to the third floor.  I waited.  A long time.  It's a waiting room though, and amusing things are bound to happen, especially as crowded as it was.  People kept walking by with iced tea that obviously came from a cafe (it's on the 2nd floor, and I definitely plan to check that out next time).  One woman was fiddling with her dvd player, and it was on top volume.  She ended up at the desk asking them to help her (an easy fix).  I ate a lot of mints.  I read a lot of kindle.  A man was irate because he claimed he didn't get his entire file back after it was copied.  Two different people talked with him, not counting the receptionist.  More than one family had children, that made me smile.

Finally I got called back.  I asked the nurse about the CT scan, and she said it would be right before my appt in two weeks.  I asked where I'd have to go to get the CT scan, mentally freaking out because it's one more thing.  "The first floor has a CT scan," she said cheerfully.  REALLY??  If it wasn't a cancer center, I'd call it paradise.  Someone will call me about scheduling that scan.

Another very nice nurse got me set up in a chair, gave me a warm blanket, offered me ativan (!!), and got me all set up and infusing nicely.  The chair did indeed massage and warm my butt (and back and legs).  They're a bit lacking in the snacks and drinks department:  there are a few kinds of juice, ice water, goldfish crackers, and cheese sandwich crackers.  Not a problem.  I'll bring my own stuff next time.

Most of the time was uneventful.  I took that ativan (which was just a smaller dose of the sleeping med I already take, no big whoop) and had a nap.  While I was watching Daria and starting to get that antsy feeling chemo gives me, guess who showed up?  Eric and the kids!!  The place was mostly empty, which was probably a good thing.  We don't want to bother anyone, after all.  Reese asked a lot of questions, including how I get to the bathroom.  After a little bit, we crammed together in my chair and Eric took a picture.  Awwwwwww.

Would I want the kids there the whole time, all the time?  Probably not.  It's boring for me, I can only imagine how dull it would be for a couple of kids.  Having them visit though, that was so great.  Listening to Reese ask really great questions, listening to Eli excitedly telling anyone who would listen about the game he was playing, seeing Eric's smile.  It makes a crappy day a whole lot better.

After my chemo adventure, we stopped at Whole Foods with the intention of getting vegan stick butter.  Of course we walked out with a bunch of other stuff, including coconut water which is awesome to drink when you're feeling gross.  I'm drinking some right now.  I was able to put the kids to bed before I crashed into my recliner and watched that movie about facebook.  The Social Network?  I thought it was about a facebook murder mystery, but it was still an okay movie.

I'm so thankful that things went well yesterday.  I'll probably spend the day catching up on Glenn Beck and resting.  Thank you for your prayers and great thoughts.  Much appreciated!

Wednesday, October 12, 2011

Friday, Friday, Gotta Get Down on Friday.  Or get chemo on Friday?  I think I'd rather get down.  Friday is the day. 

Calm thoughts.  Peaceful prayers.  Feel free to send 'em my way.

Tuesday, October 11, 2011

News of Tuesday

Eh, not much to report.  I called the doc's nurse around 1:30pm to ask her about the progress of my chemo appt.  She was able to look into her handy computer and see that things have been approved, and we were just waiting on the head nurse or someone.  I asked if she knew what day, and she asked my preference.  Friday is my preferance.  She said the pump disconnectors don't work on Sunday, so I asked if we could disconnect at home.  Right away she said that is fine with the doc, we just have to return the pump on Monday.  Relief!!!!

I also had a very awesome friend offer child care.

I never did find out when my appt is this week.  I'll call tomorrow morning.

Can you believe this?  It's totally different from the last cancer center, I'm amazed. 

Thanks for all the prayers and thoughts, all.  I can tell it helps me.  I feel much more calm today.  As I shared with some people, I need to get my head wrapped around more chemo and then I will feel better.  It also helped that I was able to bake bread and figure out a grocery list so we'll have meals/food when I'm sick.  I did some cleaning too.

So, one day at a time. 

Monday, October 10, 2011

More Chemo

I knew I'd have to do it eventually...I didn't think it would be this week.  But what can you do? 

I met with the new doc today.  So did Eric.  And the kids.  Isn't that nice?  I thought so.  We got to walk through the chemo lounge, which has heated massage chairs.  What WHAT?  I feel a little cheated because I've never had that before.  It's pretty fancy.

But yes, chemo.  The doc thinks it would be best to do one more chemo cycle (Avastin and FOLFIRI), then check things out with a CT Scan.  It sounds reasonable.  I wouldn't want to just disregard the two cycles I've already had in case they're working, but I also wouldn't want to keep doing what I'm doing for two more months and then see what's what.  The doc wants me in for chemo this week.  That I wasn't expecting.

Even though I knew I'd be doing more chemo, it's still depressing.  I hate the way it makes me feel.  I'm annoyed that my stupid chemo is disrupting Eric's job.  It's all so frustrating.  It's hard to plan for something when we don't know when exactly (I'll find out tomorrow). 

So that's the deal, for now.  When I find out more, you will too.

Friday, October 7, 2011

I'm going to dump

If that's okay with you.  Overall I feel that I'm doing pretty well keeping it together, praying about things that worry me, remembering that I need to ASK for help (that people genuinely want to help and I'm not bothering anyone).

This morning is going smoothly.  Kids are dressed, I'm dressed, the garbage is out, laundry is started (even the sheets, man, even the sheets), I have a plan for the day...I should be thrilled about this.  On the way out to drop off the garbage, a thought popped into my head.  I'm not going to be able to do all this once I start chemo again.  Because it's true.  I already know I can't.  So I'm kind of dreading seeing my new oncologist on Monday because of course, he's going to tell me that I have to start chemo.  What a jerk, huh?  Ugh.

I want so badly to look after my family MYSELF.  It sucks that cancer keeps me from that.

Right now I feel overwhelmed and chemo hasn't even started.  Part of it is the mess that this apartment still is.  Eric will be home for good today, and I know he'll help me get the last things in order.  And help me figure out how/where to store my canned goods.  And we'll get more into a routine and the kids will take over the chores we've slacked on over the summer.  I know it will be fine.  It will be good.

I just feel so GOOD right now.  No appts, no chemo...it's so awesome.  Thinking about going back to that makes me depressed.

All right, enough of this.  I have children to educate and some things to do before our exciting trip to the airport.

Pray for me.  Please. 

Monday, September 26, 2011

Still Here

I've been MIA for a couple of reasons.

Reason #1:  We moved!  To Dallas!  It's so exciting!  And busy, of course.  When Eric told me we would have people to pack our stuff, I thought it would be easy.  In a way, I guess it was, but there was much cleaning and sorting and discarding.

Reason #2:  I was on colon club a couple days before we moved and read that two people died, both young, both from stupid colorectal cancer.  Even if I don't know the people well, news of death shakes me up.  It's just a hard thing to read about.  It makes me want to hide, because scary things like cancer can't affect you when you're hiding, right?  Yeah, right.

Reason #3:  I had chemo about a week before we moved, and now I don't see my new doc until October 10th (I think?  It's a Monday).  Why so long?  Mostly scheduling conflicts.  Eric is going to be in and out for a couple weeks, and my new doc is taking a vacation.  It's okay.  I'm muchly enjoying this chemo break since I'm not exactly sure when I'll get another one.  There's just not much to talk about when I'm not on chemo.  Mostly I pretend I don't have cancer at all.  ;)

I'm also working out some things in my head, mainly concerning my faith.  I'll share when I feel it's shareable, but for now, I'd appreciate prayers and positive thoughts. 

So yeah.  I'm going to get my house set up, enjoy time with my kids and husband, and I'll catch back up with you when there's something to report.  Take care, all!

Friday, September 16, 2011

Yeah

Pump disconnected today, and I was sooooooo glad.  I always am.  I don't know how I wore that thing so much during radiation.  I guess you do what you have to do, right?

I'm exhausted despite the two hour nap I had after I got home from the cancer center.

The plan now?  Survive packing and moving.  Whoohoo!

Have a great weekend, all.  :)

Thursday, September 15, 2011

I'm awake

It's a little after 4am, and I've been awake for maybe half an hour?  Sitting on the computer often makes me tired after chemo, so I thought I would try it.  Now that I'm yawning, I probably should go back to bed.

But I thought I'd fill you in on Chemo Wednesday first.  The nurse was very helpful, double checked all my meds, caught another one I didn't get last time (emend...probably more of a big deal if I had the Folfiri).  She explained that often on the 11th or 12th cycle, the doc will drop the oxaliplatin or camptosar if the patient is having a really hard time with symptoms.  That is not me.  I mean, I feel like absolute crap, but I'd rather feel crappy and kick some cancer ass than skip out on any of my meds at this point.  Still no benedryl, which is werid to me.  I'm curious about how my new cancer center will handle it. 

I can absolutely tell that I got everything.  Blech.  The good news is that I'll probably get a 3 week break or so while records are transferred and my new doc looks things over.  Then I'll have to get an appointment with him.  I don't want too long of a break, but it will be nice.

Otherwise, chemo was very uneventful.  I passed the hour avastin test, so next time that will only be a 45 minute infusion.  Hey, anything that can cut down on time spent in the chemo chair. 

I hope the next few days will be calm too.  Now it's time to go try my bed again.  Happy Thursday, all!

Friday, September 9, 2011

It's my Cancerversary!

Uh...yay?

Two years ago today I got the news that I had rectal cancer.

I had no idea how much three little words, "You have cancer" would drastically change my life forever.  Some days are very bad and some days are very good.  I'm thankful for every day I wake up to my husband and children.

Thank you eternally, friends and family, and strangers too, who have prayed for us and helped us along the way. 

I'm not done yet.  I am hardcore.  Fuck you, cancer.

Wednesday, September 7, 2011

Please be your own advocate and some other stuff, a list of ten things

1.  Please know what meds you are on, what you're supposed to get for chemo, and check your freaking chart.  Ask questions, get the answers you need.  People make mistakes, even doctors.  Long story short, I should have pressed and asked more last week because it turns out that one of my chemo drugs was not given and should have been.  Lame.

2.  My leg rash is getting better, but the doc is going to hold chemo unless it's healed next Wednesday.  At first I was upset about that, but at this moment?  Oh freaking well.  I don't want chemo anyway (which we're all heard me complain about before).  The doc will look at it next week and let me know.

3.  Sometimes the waiting room is entertaining.  A woman sitting next to me was chatty, so I chatted with her a bit.  She was totally ripping recipes out of the magazine she was reading.  It amused me.  One of them was for frosting, and she commented that she needed a new recipe.

4.  A volunteer came through asking if any of us "young ladies and gentlemen" wanted liquor drinks.  It was really just colas and ginger ale, but it was funny.

5.  Waiting TWO HOURS to see the doctor is ridiculous.  It just should not happen.

6.  I'm so lucky to have friends who will welcome me in and fix me iced coffee and let me eat their vegan chocolate chip muffins (and who even make vegan food).  I needed that today very much.  It turned a craptastic day into something better.

7.  The doctor did not scold me about my tattoo, he said it was a very pretty picture.  I suspect his PA caught him beforehand and asked him not to make a big deal (so I wouldn't cry). 

8.  I'm so tired of doctors and cancer centers and medicines.  Sometimes I feel like it would be nice to run away to some beach somewhere.  And yes, I know I was just at the beach last month.

9.  I cried on the way from the cancer center to pick up the kids.  No bad news today, just feeling frustrated and overwhelmed. 

10.  Despite all the crap, I feel that I'm very lucky.  I have a husband who loves me and is awesome, kids who make me laugh, great friends.  I got to wake up and see today.  I really do have a lot going for me.

Saturday, September 3, 2011

Can I get off this ride now?

I went to get my pump disconnected yesterday, and I cried all the way to the cancer center.  The chemo I did Wednesday was #12, the chemo I was going to skip when my scan came back looking good, and I was looking forward to maintenance chemo.  We all know it didn't happen that way.  So I cried.  Sometimes you have to mourn when your plans don't come through the way you want.

After blowing my nose and wiping my eyes, I went into the cancer center.  The nurse called me back, flushed my port, gave me a shot, then asked if I had any questions or concerns.

"Well, I do have this rash..." as I showed him my tattoo area.

Guys, it looks like my tattoo lady has lepresy or something.  It looks TERRIBLE.  I'm not even going to take a picture, but trust me on this one, it's gross.  The nurse's eyes got wide and he said, "I'm going to have to call upstairs on this one."

So my doc's PA came down to look at it and said it was probably irritation from the tattoo.

All right, so getting a tat during treatment wasn't my best idea ever.

I cried some more, explaining that I'd had a bad scan chat with the doc Wednesday and freaked out.  Then I got the tattoo on Friday.  They didn't yell at me or anything, I was feeling overwhelmed anyway.  The PA called in a prescription for cipro, and I'm putting neosporin on the area.  It will most likely be fine.

That's just like cancer though, fucking everything up.

The PA talked to me for a little bit, saying positive things about Avastin and empathizing with me as best she could.  I appreciated that.

On the way home, I felt better.

Sometimes I feel so angry that this is happening.  It's not fair to my family, to me.  We've been dealing with this for almost two years now.  I'm tired.  I will admit that I spent about a week and a half (well, since we got the scan results) moping, feeling sorry for myself, and eating more oreos.  I think I drank about a gallon of sweet tea, possibly two.  No, I'm not joking. 

However, I've decided this silly stuff has to stop.  Feeling sorry for myself isn't helping me.  Worrying isn't helping me.  Anger isn't helping me.  It's sure not helping my family either.  So I'm going to clean it up and pull myself out of this funk.  I have one more chemo here in Columbus.  I'm going to be meeting a new doctor, a doctor who specializes in colorectal cancer.  I can do the things I need to do.

Do I still want off this ride?  Uh, YES.  But while I'm still on it, I can learn to roll with things. You can't always choose your circumstances, but you can choose how to handle it. 

Wednesday, August 31, 2011

Chemo was lame today, but I think it's because I'm in Bad Attitude Land right now.  I'm trying to work my way out.

No benedryl today.  What what??  I've had a lot of chemo, and this is the first time I didn't get benedryl.  I guess I was kind of used to that mandatory nap.  Chemo is sooooooo boring and long without it.  And I like that falling asleep feeling.  Do you think if I ask the doc for it, I'll get it back?  Is it weird that I want it? 

The snacks at the chemo center are now hoarded behind the nurses' desk.  Yeah, that's right.  Grown adult cancer patients have to ask someone for a snack.  It's sad.  I mostly bring my own food, but it's nice to have those Lorna Doone cookie things.  Especially when chemo drags on and on into infinity.  I drank their bottled water and their soda though.

Right now I feel mostly okay, just tired.  And cranky.  Sigh.

Tuesday, August 30, 2011

If I don't go to bed tonight...

will I still have to go to chemo tomorrow?

Sigh.  I'm being a baby, I know. 

Prayers and positive thoughts very much appreciated, now and always.

Saturday, August 27, 2011

My Newest Ink



Shhhhhh...don't tell my doctor!!

Friday, August 26, 2011

The LULZ never stop

I called a cancer center in Dallas today to see what needed to be done to transfer there.  The woman I talked to said that I would need to complete my treatment before I could start seeing a doctor there.  I explained that I was just starting a new treatment, but that we were moving and I would need a new cancer center.  She transferred me to a nurse. 

At first, the nurse didn't realize that I'm moving TO Dallas, not just changing cancer centers within Dallas.  Then I was trying to explain to her that I'm starting a new chemo drug regimen, this is the third drug change, blah blah blah.  She asked me what drugs, and I told her.  She said she would talk to the doctor and get back to me.  At that point, I asked if I would be seeing a doctor that specialized in colorectal cancer.

The nurse's reply?

"Oh!!!  I thought you had breast cancer!  Now it all makes sense."

Sigh.  And LOL.  Just because I'm young and female does NOT mean I have breast cancer.  However, that's the assumption I get from lots of people.  I'm positive I told the first woman I talked to that I had colorectal cancer.

At any rate, I think things are straightened out.  Just another adventure on this cancer journey!

Thursday, August 25, 2011

A new day

Aren't you glad we get to start a new day every day?  And that we get a chance to work on things and try to be better people?

Yesterday after my onc appt was rough, I won't lie.  My little guy was testing, testing, testing and by the time Eric walked in the door, I was done.  I cried and cooked dinner.  I drank two very strong amaretto sours (tall glass, whooooo!).  I calmed down and chilled out.  After dinner I ignored the world and did some sewing (and continued drinking).  I browsed through my new VegNews magazine.  I laid down and read with Reese.  Eli and I talked about how tomorrow is a new day and we both can start over.

This morning I woke up and a thought popped into my head.  Life is going to throw stuff at us, big stuff, small stuff.  I can't control that.  What I can control is my attitude and my choices.  One of the people on colonclub who I greatly admire for her strength has a signature that goes something like this:  You can't stop the waves, but you can learn to surf.  Isn't that a great way to put things?  It's so true.  This is an imperfect world full of imperfect circumstances.  I can pitch a fit and booze it up like I did last night, or I can choose to do something different with my time and energy.

I'm not saying that I don't have emotions about what is happening.  There are a shit ton of emotions, I guarantee you.  And that's okay.  I'm allowed to grieve the circumstances I find myself in.  It's perfectly all right for me to be pissed off about this situation.  But what is my choice about my attitude going to be?

I am not going to let this get me down.  I will use my energy to fight to be here for my husband and my children.  I'm going to rock on with life.

I very much appreciate all the kind words and virtual hugs yesterday.  They were needed muchly.

Today is another day!

Wednesday, August 24, 2011

Persistent pulmonary metastases.

From the CT report:  "More visible lesions in right middle lobe extending to pleural surface with a region of linear density extending to pleural surfaces and pericardium in the right middle lobe.  Small lesion in the lingula is slightly larger.  Spiculated mass in the right lower lobe has grown from 14mm to 22mm."

Sad face.

I tried not to cry, I tried to be business like, to get to the bottom of things.  I held it together for maybe five minutes.  The doctor's face did it, pretty much.  He was so obviously disappointed. 

I wanted a break from Big Chemo so badly.

The doc first suggested changing things up completely and having me start FOLFOX and avastin.  I don't want to do FOLFOX unless I absolutely have to.  I hate it.  He thought that maybe we could continue FOLFURI and try Avastin instead of Erbitux.  So the plan at this moment is for the doc to consult with the oncologist from Atlanta and also with an oncologist he knows in Dallas.  My doc will call me sometime on Friday and we'll figure things out.  I have a tentative appointment to start chemo back up next Wednesday.

But hey, guys, my liver is totally fine!

I just don't even know what to think.  I'm sad, of course.  And frustrated.  I knew this whole cancer thing wouldn't be easy.  Right now I'm eating oreos and feeling sorry for myself.

Sometimes I wish I could peek at the end of the story to know why.  What is the point of the struggles I have right now?  Would it be easier if I knew? 

Well, I'm going to find out how long I have to stay out of the pool if I get a tattoo really quick this weekend.  And I'm also contemplating a high raw diet.  And somebody needs to educate the children, I suppose.  :)

I would appreciate positive thoughts and prayers.

Sunday, August 21, 2011

I'm nomming on a salad (curry tempeh, lettuce, some tomato, mango/ginger dressing) and trying to think what to write. 

The place is a flutter with moving activities.  We're trying to make decisions about what to bring, what to throw away, what to donate.

I'm a little nervous.  I mean, firstly I'm excited, but a little nervous.  I'm nervous about finding another doctor.  About making new friends.  About learning how to use the buses and trains.  About finding a store where I can buy my hippie foods.  About finding a new homeschool group.  I keep reminding myself that we've moved before and things tend to turn out the way they are supposed to. 

I wish I could say that cancer was the least of my worries.  It's annoying how cancer gets all wrapped up in everything else.  Maybe I'll feel better after we see the scans on Wednesday.

It will be interesting to see where life takes us next, that's for sure.

Thursday, August 18, 2011

So the whole fam got up at the buttcrack of dawn yesterday to drag me over to the medical center.  My appointment was scheduled for 6:30am, which sounded like the best idea ever when I scheduled it, but it's crummy to have to wake up the kids.  I usually try to think about pitfalls like that, but when the scheduler is on the phone with the coordinator and she says, "How about 6:30am?"  I'm so on the spot.

We arrived to the medical center just a handful of minutes before my appt time, and I ended up waiting around.  The nurse who finally got me was nice, but she didn't know how to access a chemo port.  I had the option of letting her stick me in the arm or waiting around for someone who could deal with the port.  Seconds before she asked me this, she and another nurse had mumbled about the emergency room being crazy and everyone was there.  So I let the nurse stick me in the arm.  She assured me she was good at it, but it still took her two tires to get an IV line in.  Booooooo.  I've had worse pain, of course.

Honestly, I think I like the arm stick for the CT scan better.  It felt so weird last time, the dye going in the port.  It's warm when it spreads throughout your body, and you can feel lit.  Maybe I just wasn't used to that warming sensation going through my port.

The guy in the CT scan room recognized me and said, "You don't have your kids with you today?  This isn't a very good Mother's Morning out, is it?'  Hahahahahahaha.

Then I met up with Eric and the kids.  They had a way better time than I did, eating breakfast at the hospital cafe.  I got dropped off at the cancer center.

Waiting.  I did arrive a bit early though, and it wasn't too long.  I got a nice chair by the blanket warmer and the bathroom (do I sound like a little old woman when I gab about my chair??).  The volunteer swooped down on me, got me a blanket and even remembered that I like two blankets before I fall alseep.  And things were uneventful.

That was my Wednesday!  I'll see my oncologist next week and we'll see what's what.

Thank you so so much for all the positive thoughts and prayers.  This is hard for me, maybe not the hardest thing I've ever done in my life, but I feel like I need everything there is to get through these few chemo days.  Thank you.

Wednesday, August 17, 2011

Awake

I woke up to strange voices, kind of sounding like some sort of space mission.  Eric mumbled something about the TV, rolled over, and went back to sleep.  I laughed.  It was, after all, kind of funny.

Then I realized that my ostomy has been FREAKING OUT since I went to bed.  Although it is nice to be sleeping and pooping at the same time, there was also a major filter fail on my pouch.  It happens.  I opted to get up and change it out.  My guts are expressing their anger at the barium (banana flavor!) that I had to drink last night.  Sorry guts, I have another bottle in about an hour and a half, then more at the clinic.  Perhaps I should have agreed to the chest only CT scan that my onc suggested and avoided the barium altogether?  I have a need to see my clean liver, so he's humoring me, I think.  Maybe next time I'll consider it.

The middle of the night ostomy adventures woke my brain up, and I started thinking so many things that now here I am.  I would have to get up in about an hour anyway (my CT is at 6:30am!!) and I get a benedryl nap today, so I think it will be okay.  We shall see.

Play a 4am version of guess that song?

She says baby
It's 3 am I must be lonely
When she says baby
Well I can't help but be scared of it all sometimes
Says the rain's gonna wash away I believe it

Sunday, August 14, 2011

For someone who claims to be adverse, almost moritified, by change, it seems like I move a lot, huh?

That's right, we're off again!  Dallas, TX, here we come! 

It all happened very fast, but also in a very "this makes sense" sort of way.  It's hard to explain.  No one has been sitting around our place plotting ways to get out of Columbus.  I like it here, we have awesome friends here, it's a nice city.  I'm not sure why things happen the way they do.  We weren't "supposed" to move to Columbus either.  At any rate, we are moving and accepting all the challenges that go with it.

Like finding a new cancer center.  It's probably no surprise that I'm not thrilled with my current situation.  I like my doctor.  The majority of the staff kicks ass.  There are things I would like to change.  Things that I think can be better.  I'm hoping I can find what I'm looking for in Dallas.  It's a big place.

I'm excited.  And freaked out.  And curious.  And hopeful. 

Friday, August 12, 2011

Thinking about all the things

But if I'm going to be honest, I'm mostly thinking about my CT scan next week.  It's not keeping me awake at night (thank you very much, sleeping pill!), but the last couple mornings have been early.  There's other stuff going on (good stuff), but yeah.  Stupid scan.

I'm trying not to worry.  The messages I've been surrounding myself with for the past few months are that worrying does not help.  I get it, I really do...putting it into practice is HARD. 

It bugs me that I have so much scanxiety.  The process itself is easy, it doesn't hurt.  What we're likely to see on the scan isn't a big mystery, I just had a scan two months ago.  But you know...what if.  What if something else has popped up?  What if this crappy chemo isn't working?

Luckily, we're going to be so busy for the next few days that I won't have a lot of time to think. 

Monday, August 8, 2011

I totally freaked out this morning after looking at my stoma.  Let me back up a bit though.

Chemo makes my guts slow to a crawl.  I will go from normal to nugget output like whoa.  It usually lasts a couple days after chemo and then things go back to normal output.  This time, it did not go back to normal.  I made it a point to eat foods that are good for "normal."  I drank lots of water.  Usually this does the trick.

Not so this time!  I looked at my stoma this morning and it was all swollen and sad and awful.  I decided I needed a professional to take a look.  After searching all over the place for my ostomy nurse's number, I thought I would just stop by and see if she could help me out.

Things must happen for a reason, because my nurse happened to be in (even though she had planned to take the day off).  She was glad to help me out, and suggested a remedy.  I was so glad she was in the office.

My own remedy, coffee, actually got things moving so I'm no longer freaked out.  And I have a plan for the next time this happens.

Fellow ostomates, I wanted to share this story to let you know that we all have bad days with our ostomies.  Most of the time I actually like mine very much, and I know that's not the case with everyone.  This weekend was pretty terrible though, not something I want to repeat.

Friday, August 5, 2011

I feel like I sort of fall off the face of the Earth on a big chemo week.  Sitting at the computer tires me out, so I don't keep up with facebook or my message boards as much.  It makes me feel a little left out, but I suppose it is what it is.

Disconnect went pretty okay.  Eli pitched a fit as I was leaving, and I was already in a bad mood and tired.  Then a couple cool things happened.

First of all, the nurse who disconnected my pump and I got to talking about school.  She shared with me about her family and how she is one of the first to graduate college.  We talked about our hometowns and small towns vs. bigger cities.  It was just a fun conversation, and I appreciated that she took a few minutes to talk to me.

The other cool thing was a package sent by someone I don't know very well from a message board I hang out on.  She sent me a care package of teas and vegan goodies, and a sweet note.  Don't get me wrong, the stuff was awesome, but the note and knowing that she is thinking about me meant a lot. 

I'm exhausted, so I'm going to retire to my recliner now.  Hope y'all have a great weekend!!!

Thursday, August 4, 2011

The WAITING

That's what I did for a big chunk of yesterday, wait.  Waiting room for at least 30 minutes.  Waiting for the needle lady to get me hooked up.  Waiting to see the doctor.  Waiting at the appointment desk.  Don't get me wrong, it's not that big a deal.  I was clockwatching the whole time though, as my appt time for chemo came and went.  It was insinuated that I might not be able to do my chemo if it got too late when I scheduled it.  I don't like chemo, but I kind of need to do it.

It helped a little when the doc's nurse assured me that the chemo nurse could call her about the delay, that it wasn't my fault.  And she also was looking in to why I waited so long.  I appreciate that.  I can't remember the last time that I waited less than 1.5 hours for the whole seeing the doc thing.

Finally around noon, I got called back to the chemo lounge.  Premeds arrived quickly, and things went smoothly.  And I was outta there at about 4:30.  Not bad at all!  Well, kind of bad, since I spent the entire day at the cancer center.  I can think of about a million things I'd rather be doing.

There was an older couple sitting to the left of my chemo chair.  I think it was the wife's first chemo, because there were several people explaining things to them.  At one point I heard them wondering how to get to the bathroom while attached to the pole.  I had to go anyway, so I unplugged and wheeled past them.  They watched me every time I got up.  They were watching me quite a bit while they were there, too.  It's times like these that I wish I was more talkative and willing to strike up a conversation.  The chemo lab is just not the place where I feel like doing that.  Plus, I was watching Freedom Writers (which is a pretty good movie, if you were wondering).

I forgot my lunch in the car, so that left me reading labels on all the snacks.  Lorna Doone cookies?  Vegan.  As were the peanut butter crackers.  Eric would have popped over, but it's all the way across town and I didn't want to bother him if I could help it.  I think I would have felt better eating my own food though, it was just healthier (lentil stew and something else, I forget now).  I wish they had fruit or veggies at the cancer center.  Maybe most people aren't up to eating that stuff, but there must be something healthier than Lorna Doone cookies.  And no, I don't think Fig Newtons are healthier.  Or the jello and pudding.  I guess I shouldn't rag on the cancer center too much, since my main staples on chemo weekends are ramen noodles and popsicles. 

The only other thing that happened is that my next CT scan is scheduled for August 17th.  I was a little surprised because I thought we were going to wait until Sept, but the doc is antsy to see if the chemo is working well.  At first he was only going to do a chest CT, which would be nice since I wouldn't have to drink the barium.  I was reluctant.  I reminded him that my pelvis did light up, most likely due to radiation, but what I'm secretly worried about is my liver.  So far so good, it's been clean.  However, never did I even think cancer would pop up in my lungs.  The barium isn't that bad, and feel free to remind me of this when I'm bitching and moaning about how gross it is.  Haha.

So I'm keepin' on keepin' on.  We start school around here next week (as long as I have my act together) and homeschool group too.  I also have a few sewing projects in the works.  It will be good to keep busy.

Wednesday, August 3, 2011

Big Whiny Baby

That's what I feel like.  I don't want to do chemo.  Not today, not ever.  It sucks, I don't like being sick, and the cancer center is not fun enough.  I suggested to Eric the other day that perhaps the cancer center should make chemo more like a party because then it would be fun to go.  I don't know what kind of party one would have with all the Benedryl napping people...a quiet one?

Yes, I'm thinking of all the reasons I just need to do it.  Yes, I'm trying to be positive. 

Blah.

A lot of people tell me that I'm so strong, but I sure don't feel like it. 

Monday, August 1, 2011

Ten Years


Ten years ago on July 28th, Eric and I got married on the shore of Lake Superior in Grand Marais, MN.  I can't imagine spending the last ten years (and some...we didn't have a shotgun wedding, y'all!) with anyone else.  Shortly after I met Eric, I knew I wanted to grow old with him, sitting on a front porch somewhere laughing and making snarky remarks about the world around us.  Drinking whatever tasty adult beverages we fancy at the time, and eating two different dinners (vegan for me, dead animals for him, haha).  Traveling to new places, having adventures.  It's my ultimate dream, both day and night.  Worth fighting for, don't you think?

Tuesday, July 26, 2011

Things I Enjoy

Building lego sets with the kids (Hogworts Castle this time)
Helping Reese learn to ride her bike, and watching her comic tips/falls (she gets up laughing, no worries)
the hustle and bustle of packing for a beach vacation
the Big Huge Hugs I get in the morning after the kids wake up
laying in my husband's arms at night
ICE COLD WATER
making lists and plans
My waving Lucky Cat
learning new things and good discussions
a clean kitchen
a busy sewing area, complete with a project list
family dinners
running in the morning coolness (yes, 77 degress is cool to me)
mango muffins
that most of the time our biggest problems are first world problems
waves on the beach (can't wait to see them!)
watching cooking shows and competitions
afternoon reading with Reese and Eli
Panang Curry
the quiet in the morning before everyone wakes up

There are always good things, even if sometimes we can't see them.  I'm choosing to seek the good things today.

Friday, July 22, 2011

I ate too many noodles

They tasted good, all salty and Daiya cheeze-y.  Blech.

Pump disconnect went pretty okay.  The nurse was appropriately sympathetic, and asked about my treatment, how many Big Chemos I have left.  I think it's four.  That's not very many, right?  And maybe I can go on maintanence chemo?  Holy hell, I hope so. 

No more chemo until the first Wednesday of August, which, if you were wondering, is August 3rd.  (eyeroll)

In the meantime, I'll be at the beach.  Don't tell my doc.  Hahahhahahaaha.

Thursday, July 21, 2011

Infusion went well yesterday, very calm and no drama.  I showed up at 8:30am, didn't wait more than a few minutes, and was booted out around 2pm with my best friend, the pump.  (hahahaha, NOT)

One of the worst things about infusion is falling asleep from the benedryl and then waking up having to pee when the benedryl isn't quite worn off yet.  I have to walk really careful because I know if I fall someone will freak out.  I haven't fallen yet!  I watched Daria again, did a lot of dozing off.

So.  Do you think I'd hate the pump less if I made some sort of fun and funky cover for it?  Because it's either that or some permenant graffiti, and I don't know if the company I'm borrowing it from would like that.  If I come up with something, I'll post it.  There's really no need to walk around sporting a boring black pump when I have a sewing machine and piles of fabric!

I woke up a lot last night, having weird dreams.  Finally at about 5am I just got out of bed.  Maybe too much Sonic Blue Coconut slushie yesterday afternoon?  That's the best thing after chemo.

Tuesday, July 19, 2011

So are you waiting on the edge of your seat to see if I ever got out of my funk?

I think I did.  There are good days and bad days, but that's normal for anyone.  At any rate, I'm hanging in there.

Actually the most annoying thing in my life right this moment is dealing with scheduling and the clinic.  You'd think after all these months it wouldn't be a big deal.  I feel like I'm speaking another language sometimes when I talk to these people.  All I want to do is cancel my appt for next Wed, and reschedule for the Wed after that, have my onc appt in the morning and do my Little Chemo after that.  Is that really so hard?  Really?  Is it?  And if so, can I schedule out a few weeks, maybe a month at a time?  I'm so sorry that I have CHILDREN and need to arrange care for them.  I always thought I was ahead of the game because I don't have an outside job to work around.  Honestly, it would be nice if the person scheduling would, instead of being a snotty beeyach would acknowledge that it all sucks.  Just tell me you are sorry for what I'm dealing with and in a nice way ask how you can help.  I feel that I'm a reasonable person, I get that schedules fill up, and I get that I'm not the only person at the clinic.

Frustrating.  And when I encounter a snotty attitude like I did last week, I just want to lash out.  My kids and husband didn't ask for this shit.  We're all depending on having appointments on WEDNESDAYS, can we just make that work somehow?

I don't know...part of it too for me is that I'm tired of dealing with it ALL.  It makes me weary.  It makes me worry.  It makes me wish I could run away (preferably to the beach).

Well, I have things to do today, which include building Hogworts castle and teaching my kid some math.  If you have big hugs and positive thoughts for tomorrow (which is a Big Chemo day), I'll take 'em.

Friday, July 15, 2011

Funk you, Funk.

I get into funks, you know, where I just want to hide all day long.  I look around and see things that need to be done and I can't seem to bring myself to do them.  Simple things, like deleting emails, seem like climbing a mountain.  I'm starting to remind myself of those hokey depression commercials where the cloud follows the lady (it's always a lady too, isn't it??) or she falls into a hole or whatever.  I also have a headache which is most likely due to staying up too late last night reading a Dean Koontz book.  Today is just one of those days when I'm feeling sorry for myself and pouting.

Things are going well, honestly.  There is a medical plan, at least until September and another scan.  Eric is taking us to the beach at the end of the month.  I'm busily planning our homeschool year, buying books and thinking about schedules and routines.  Yesterday I put a couple Lego sets together with Eli, and this weekend I'm going to see Harry Potter and the Deathly Hallows, Pt 2.  I have awesome friends and a cool family.  I found a really neat recipe for Salsa Verde Burgers with Avocado Mayo, and I got FOUR new cookbooks for my birthday. 

I think the thing that sucks the most about cancer is the shadow of it covers your whole life.  Sometimes the shadow is heavier than other times, but even if it's light, it's still always there.  Maybe the best I can do is keep taking care of myself.  I should start yoga again, I've been a yoga slacker. 

I don't know.

But for today, there is cleaning to be done (I'm lookin' at you, homeschool shelves).  Homeschool books to buy.  Sewing is waiting for me too.  I'm not sure what will help me out of this funk, but I'll keep on keepin' on.

Thursday, July 14, 2011

I think everyone has challenges in life, and things that they can work on.  Over these past couple years, I have come to find that one thing I have a really hard time with is asking for and accepting help from others.  I'm not sure why this is.  What is it about asking for help that is so hard?  Am I worried that I will be turned away without reason?  Am I afraid that I will look weak or appear too needy?  Am I worried about taking more than I am able to give?  Inconveniencing others? 

I can think of many times when I should have asked for help and didn't.  When Reese and I were having so much trouble breastfeeding at the beginning.  When I struggled with difficult situations in high school and college.  When I have just needed to talk to someone over the past couple years.

In most cases, people WANT to help.  People want to feel needed.  I know this.  I feel the same way, I'm happy to help others.  My first reaction when someone asks if I need anything is to say, "Oh no, I'm fine."  I know that friends have said the same thing when I offered to help them, and I wonder if they just feel the same way I do about accepting help.  It's hard, even though I know in my mind that we're all better together, helping each other.

This is something I will ponder and work on.

It's amazing the lessons you learn (and learn, and learn, haha) on the journey, isn't it?