I’m back!

Well, I was actually back yesterday, but I was pretty much crashed out during the day and  then we went to LA for a lecture last night.  But that’s for another post another time.

The church retreat was as wonderful as I thought it would be and much needed.  There was music, singing, dancing and much joy.  I met new people, strengthened existing relationships and connected with friends on a deeper level.  I learned a lot about others as well as myself.

Here’s a great pic of MJ signing along with the music.

One of the activities I really enjoyed was to make Wampum.
I will borrow from Wiki for a moment for those that dont know what that is:
“Wampum are traditional sacred shell beads of the Eastern Woodlands tribes of the indigenous people of North America. Woven belts of wampum have been created to commemorate treaties or historical events, and for exchange in personal social transactions, such as marriages.”
They had all kinds of beads out for us to make a bracelet that would tell our story.

When we finished we broke into small groups and shared our stories.  It was so interesting to not only see everyone’s interpretations of the beads they used, but to hear all of these amazing stories.  An excellent reminder that everyone has something they carry.  Everyone has pain.  EVERYONE has a story.
I’m not going to explain every bead on mine, but I just wanted to point out the larger round yellow bead at the bottom.  I used that bead to represent the outcome of my cancer.  A big bright future.  And one of the most amazing moments was when MJ and I shared our bracelets and she used that exact same bead for the exact same reason.

On Saturday one of the pastors came up and asked if I would be interested in having a “laying on of hands” done during the Sunday service.  Sure!  Why not?  I didn’t really think anything of it.
I did think about it later that night though.  I wasn’t really sure what this was going to be like.  I completely trusted my pastor and church and figured there would be no harm in trying this.  But all I could think of were the Pentecostal churches where they dance around with rattle snakes.  Of course I knew that wasn’t what we were doing, but that was the only church image I could associate with a laying on of hands.  I have no idea why.  Maybe I was secretly hoping for the snakes.

The laying on of hands experience was very powerful for me.  I can’t really describe what I was feeling.  I guess I could say I was feeling surrounded and covered by God’s love.  For those of you who don’t believe in God?  Well, I guess it felt like wrapping up in a large, soft, fresh from the dryer snuggly blanket with kittens and puppies.  It was amazing.

Oncology appointment tomorrow.  Will update with all of the latest test results when we get home from it.  Stay tuned.

 

 

Retreating

As I figured it would, Wednesday’s procedure pretty much put me out of commission for the last 2 days.  Something about the drugs they give me that freaks my poor body out now.
Today is the first day I’m starting to feel back up to normal again.

MJ, the kids, and I are heading out of town for the weekend to our church’s retreat.  Perfect timing for it I think.  A chance to get away and have some spiritual time.  God and I have a lot to chat about right now.
I’m taking my camera and hopefully I’ll be inspired to snap some pictures.

Back on Sunday.   Have a great weekend!

I think we have a winner

*********WARNING*********
The following post may contain graphic details.
TMI filter is currently off.
Read at your own risk.

Well, I had my first colonoscopy today.   Whoo hooo!

For those of you who have never had one, it’s an interesting experience.  Let’s start with the prep, shall we?

Yesterday was prep day.  On Fat Tuesday. Or as I like to call it now, Scat Tuesday.  -yes, I totally went there. You were warned.
I started out the day by having an all liquid diet.  Apple juice, tea, water and this amazing homemade vegetable broth MJ prepared for me.  I didn’t have much of an appetite anyway so it wasn’t so bad.

At 6pm, I had to start “the prep”.
A few days ago I picked up the medication from the pharmacy.   I expected some pills or a small bottle of something.  I jumped back a little when the pharmacist plopped this giant gallon jug on the counter.

So my instructions for last night were to drink 8oz every 10 minutes.  Uh, OK?  I think I can do that.
I had been warned about the taste, but I didn’t find it that horrible.  They gave me a lemon packet to mix in so it had a salty lemon taste.
Got my first 3 glasses down and was in the middle of my fourth when something rather strange started happening in my body.  A gurgling and rumble like no other.  And what I was warned would happen started.  Explosiveness.
…Except from the wrong end.
I threw up, vomited, puked and hurled. I don’t think I’ve had that kind of display since my early 20’s.
Oh no!  I was worried I wouldn’t be able to have the procedure.  I looked it up quickly and it did say that happens sometimes and to just take a 30 min break and get back at it.
The rest of the night was miserable.  It really wouldn’t of been that bad had the nausea ever gone away.  It just stuck with me the rest of the night until I was sitting on the couch at midnight blubbering trying to Fear Factor my way through another 8oz.  mis. er. a. ble.
Things did eventually move in the direction they were supposed to though so I was happy it wasn’t all for naught.

Side note- for a hilarious prep story, check out this blog post:  A Colonoscopy & Hershey’s Kisses
Today was procedure day.  Or Ass Wednesday as I liked to call it.  -Yup, I went there too.  Come on, it’s kinda funny.

I was by far the youngest person in the GI waiting room.  I was a little grumpy from hunger and tired from the never ending prep.  I couldn’t help but look around at everyone in the waiting room and wonder what kind of night they had.  Did they throw up too?  Did they get pills or have to drink the stuff I did?  There were a few haggard faces that I think said a lot.

Once they took me back everything seemed to happen really quickly.  The nurses ask what I was in for with a tone like “hey kido, you’re too young to be getting this”.
Before I knew it I was on the gurney getting poked and hooked up to various things.  I felt like I was on ER.
There was a Filipino nurse who put my IV in.  She told me to make a fist and then jammed  the needle in the lower part of my hand near my wrist bone.  I flinched and she started scolding me in broken English about how I shouldn’t of done that and now it’s probably not going to work. Um, YOU JUST JAMMED A BIG NEEDLE IN MY HAND. Then she turned to the other nurse and ratted me out for flinching.  The nurse checked it and it was fine.  I think the other nurse was totally over the Filipino one.  I had to keep from chuckling.  I didn’t want to get busted for that too.

The doctor came in and introduced himself.  Very nice guy.  If you’ve never had a colonoscopy before, here’s what the room looks like:

This was pretty much my room except there was a big HD flat screen and my doc was an older white dude.  Wasn’t really smiling as much either.  Or maybe he was when he stuck the camera in?  I wouldn’t know.

The tattoos  – I went with a butterfly on the top of my butt, Spongebob on one cheek and green lantern on the other .I don’t think he appreciated them.  Maybe he thought they were real?  LOL  No one said anything about them. They at least made me laugh.

The drugs kick in really quickly.  I was mostly awake but pretty much out of it.  I do remember at one point looking over at the screen and watching them pinch and draw on something.  I could hear them talking but I don’t really remember what about.
After everything was done I was wheeled into recovery.
Still groggy the doc came in to show me the pictures he took and to explain they found a 5cm mass.  YAY!  I really hope this is it.  Well, I don’t WANT it, but I want to get treatment going.  I want to stop searching. He seemed to think this was the bad guy.

They took some biopses and we should hopefully find out for sure soon!  And just in time for colorectal cancer awareness month.  Do I have great timing or what?

Celebrations and AMDs

Haven’t posted in a few days because we’ve been busy and spending some family time together.  Nalani’s birthday isn’t until the 23rd but we celebrated this weekend. She invited some of her best friends over to play on Saturday.  They’re super cute together.

On Sunday we got together with Grandpa & Grandma and Kate & Amy for the adult lunch at IHOP.  The waiter give me a “girl, whatcho doing trying to eat here” look when I told him I was vegan, but I did manage to find something to eat.
I think I have one picture on my phone from Sunday.  I’ll have to look.
One thing I’ve noticed lately is that I haven’t been taking a lot of pictures.  It’s kinda weird because I LOVE taking pictures.  I noticed this happening around Thanksgiving.  Perhaps I was already starting to feel tired then.  Subtly and didn’t realize it.  Now that I’m sick I think part of it is just feeling bleh sometimes and I think part of it  is just enjoying the moment.  I’ve never felt like I was missing anything taking pictures, but it does take focus an work sometimes.  I’m sure I’ll be picking up my camera again soon since I do love it.  Its just one of those things I’m taking a break from right now I guess.

After our Sunday lunch our friends came over to help us fill out our Advanced Medical Directives.  Do we know how to rock a Sunday afternoon or what?
MJ and I had discussed quite a few times how we needed to do this with the traveling we do.  Just one of those things we never got around to.  I also do not have a living will, any instructions for funeral or any of that fun stuff.  Those things you think “jeez, I should really get around to doing those” and put off.  I didn’t really think I was going to have any kind of need for any of it for along time.  And hopefully that is still the case.  Unfortunately though, these are papers I now have to fill out.  And honestly, it kinda sucks to do right now.  I’m kicking myself that I didn’t just spend a day and get it over with when I didn’t have to face difficult medical issues.  So, my friends, if these are things that you have also put off doing?  Do yourself a favor and crank ’em out.  You can always make changes later if you need to, but you at least have the bulk of it done.

Yesterday MJ and the kids were all home.  We played some games and finished number 1 of the 12 puzzles.

I’ve always thought puzzles were more of a solo sport while MJ thinks it’s more of a team player activity.  At one point all 3 of them were huddled over the table and around me testing my OCD space issues.  MJ complained I was cranky but all things considered I handled it well.  I didn’t tear out all the pieces and flip the table over and the puzzle was finished even.  I call that success!

Here’s your chance to get involved!

I’m taking a very serious poll…

Here are the pictures of each one:

If there’s a particular one you like in one of the packages, let me know in the comments field.  Thank you for the input!   😀

Productivity

I was quite productive today.  Felt good this morning.  Had some energy.  It was great.

I got on the phone with the current health system’s Member Services first thing.  Poor girl got to hear an earful from me.  I told her everything we’ve been going through and how unacceptable it was that they didn’t have a colonoscopy appointment until April.  She put me on hold a few times and finally came back with a magical appointment for Monday the 27th.  Amazing how that happens.

Well I’m totally the squeeky wheel now because I called the oncologist office to see if I could schedule and appointment with them as well and not only did they get me in but got me a sooner appointment for the colonoscopy.  Wed. the 22.  Magical.  Of course that’s two hours on the phone I could’ve done without, but at least we have progress.

I picked up my prep stuff for the procedure.  I’m gonna save that for another blog post, but, yikes!  I’m kinda scared.

The great news is I stopped by Sharp (medical system we are switching to) to sign the release forms for my medical records.  One of the women at the desk overheard who I was and told me that they were going to get me an appointment for a colonoscopy the first week of March since I had mentioned to the Dr. in my e-mail that Kaiser didn’t have an appointment until April.  How awesome is that?  I’m not even technically in their system yet and they’re already providing better service than where I am.  She also said they already had a referral in for oncology so I will be able to see them first week of March too.  YES!  THANK YOU!

I met up with MJ for lunch at a vegan restaurant called Loving Hut.  I’ll admit, I didn’t have very high expectations.  I saw the menu and it looked decent, but I wasn’t totally sold.  Well, it was AMAZING.  Very good food.  I had spring rolls and a “burger” and fries.

The burger tasted kinda like when Burger King used to do those “Western Whoppers”.  Yummy BBQ sauce.  Delish. I hardly finished any of it but it was the most I’ve eaten in weeks. MJ even liked her meal and she doesn’t do veggies.  I was shocked.  Place was packed too.  I highly recommend.

Productive day meant I crashed pretty hard in the afternoon after picking the kids up.  I really don’t like this part of it.  I get so tired.  I’m starting to feel like I need to take a nap daily now.  While that might sound very nice, it’s quite frustrating when you just want to get stuff done.  Cats are loving the nap buddy though, and well, it is a nice warm snuggle.

::sigh:: the system

I’m trying to remain very positive about the care I’m receiving right now.  Luckily I have health insurance and I live close to very good medical facilities.  I am very grateful for that.  I just get a little frustrated getting shifted through the system.

The doc I saw on Tuesday night ran a bunch of new labs.  Apparently my white blood count was pretty high so she called me Wednesday afternoon and told me to go into the ER.  She said she’d call ahead to refer me for a scan.
So I went.
Still not feeling well and super not happy to be waiting in the ER for hours and hours.  The ER doc wasn’t really sure why she referred me in.  He basically said, “well, you have cancer”  Um, yeah.  Know that.
I guess they wanted to make sure I didn’t have some kind of infection starting up somewhere.  Which makes sense.  But 7 hours and $100 later? Kinda bites.

We met with a medical oncologist today.  She went over mostly what we already know.

And by the way, for those of you who are not familiar with cancer, I’m sure you’ve at least heard of cancer staging?  If not, Google it.  We already knew this was likely going to be the case, but my cancer no matter where the origin at this point is stage IV. I’m pretty sure there’s very few phrases you can say to a person that is as scary or devastating than “You have stage IV cancer” Luckily I’ve had some time to let this soak in so I didn’t fall off the table or anything when she told me.

She thinks it’s likely colon cancer and asked why we hadn’t had a colonoscopy yet.  I’m pretty sure I actually rolled my eyes so hard you could hear them.  It’s the one thing we’ve asked about a few times and no one has said we needed it yet.  Hmmph!  So she put in a referral for us today and they called me this afternoon to schedule.
“The earliest available appointment we have at any of the facilities is April 22nd”.
Are.  you.  shitting.  me?????
I seriously almost lost it on the poor guy.  I wanted to just scream “I HAVE STAGE 4 CANCER MOTHER FUCKER DO I LOOK LIKE I HAVE THAT KIND OF TIME”?
But I realize it’s not his fault. So I now I’ve been playing phone tag all day trying to get something done.

We switch health systems March 1st.  Luckily the oncologist I saw today was very understanding of that and even offered to call her oncologist friends there to help get the ball rolling.  Also very lucky that I happened to be in this system before.  I called today to see if I could set up an appointment for the first of March and it’s already done.  She even set up me so I could create an online profile with their online system to access all of my information.  I’ve already sent an e-mail to my primary to let her know what’s going on to see if there’s any way we can get this moving so we don’t delay treatment any longer.  So far, I’m way more impressed with this new system.  A blessing in disguise I think.

As for me, I’m doing OK.  Much better than the last few days.  I still get pretty tired.  Dr gave me Norco for pain and well, that’s awesome 😀  I only take it at night though to help me sleep.  I want to be as functioning as possible during the day.  It’s hard to plan things because I never know how I’m going to feel, but I’m going to make it a point to start getting to yoga and swimming.  If I can get at least those things in I’ll feel accomplished.

Thank you all again for the birthday wishes and all of the support and love you’re sending this way.  I really couldn’t be doing all of this without it.  ❤

What a birthday!

My birthday started out pretty great.  I enjoyed hearing from everyone and had a nice relaxing day.  Unfortunately about 3pm I started not feeling well.  And I went down fast.
Fever, chills, pain.  Just yucky.
This was the sickest I’ve felt since all of this started and we called the nurse to see what to do.  Luckily they had a doc appointment for me.  Not the way I really wanted to spend my birthday.  There were a few past birthdays where I could’ve ended up in the hospital (ie my 21) but this is the first one in 39 years.  Well, second one.  Guess that first birthday counts 🙂

MJ blew up a birthday balloon for me 😀

Today I was feeling a little better but still kinda bleh.  I had a nice visit with my friend Tracy and was enjoying the day until the doc called about concern over the labs I did last night.  She advised that I go to the ER.

So here I am.

Thrilled to pieces.

Luckily I found wi-fi so I have stuff to do now to pass the time.

Strike a pose!

OK warriors, get ready cause I officially have cancer.   -No, strike that.

I am temporarily challenged by cancer.

I was supposed to hear from the doctors today.  Waited and waited.  By 3:00 I couldn’t take it anymore and called.  I was put through to a front desk who said they would have one of the nurses call me.
I waited more.
After an hour I decided to call back again, was transferred back to that same department and no one picked up the phone.  I was starting to fume.
I called back again and wouldn’t accept a transfer.  I had the guy get them on the line for me.  The lady who I talked to earlier said she gave them the message and to wait.  That’s when I started to unleash.  I asked if there was another doctor I could talk to.  Basically I wasn’t going to let her off the hook.  She transferred me through to the nurse who I’ve talked to a few times before.  I was sobbing at this point.  I explained that they told us we would know by today and that’s it’s been a month already and I can’t take it anymore.
She told me the docs were in surgery all day Friday and today and that’s why they didn’t call yet, but that they would call me tomorrow.
I sobbed even harder.
“They’re going to call on my birthday?”
That got her.  She paged the doc and he called me 1/2 hour later.

He explained to me that I indeed do have cancer.  The mass they tested from my liver is malignant but not ovarian.  It’s most consistant with a gastrointestinal cancer. So far all the scans I’ve had haven’t shown any masses anywhere else.  The only thing they couldn’t see is the colon.  I’ve been referred to another oncologist now and my guess is the next step will be a colonoscopy.

I knew I would have feelings upon hearing the news and I did.  It’s hard when there’s definite reality.  But I’m having even bigger feeling about the fact that it may be colon cancer.  I fit all of the risks for it.
It’s difficult to think the things we did when we were young can totally come back and bite us in the ass. Literally for some of us.  The thing is though, if you buy enough lottery tickets, eventually you’re going to win.  It may be a little or you may win big.  And I certainly bought the tickets.  Every cigarette I smoked, every fast food meal I ate, every drink I had, every day I decided to lie around and not exercise.  Those tickets all added up.
I’m not beating myself up.  It happened and there’s nothing I can do to change it.  The frustrating thing is I was on my way to changing all of it.  Just didn’t matter.  I had already bought the winning ticket. And I got the big prize.
It’s something I would like all of you to think about.  Pick up a fast food meal? Not a big deal, right?  Have a few more beers than you planned?  Meh, it happens. Drink soda every day? Who doesn’t?  But keep in mind that you are buying a lottery ticket every time you do these things.  It may not get you cancer, but you could still be in the running for something.
Do your homework and get checked up!
—This rant was brought to you out of all the love I have in the world for all of my family and friends ❤

I was looking for the video of Pat Benatar’s “The Warrior” but all I could find were cheezy ones that people had made.  But while looking I came across another awesome song from one of my all time favorite 80’s movies and it seemed even more inspiring to me tonight.
Enjoy…

Here’s to Good Friends

I had a little birthday shindig yesterday and it was such a great day!
I decided last minute to throw a game night and we had at least 20 people come and join us.  I had a blast and it seemed like everyone had a good time as well.

A little while ago I posted on Facebook that I wanted to do something fun or funny to keep  all of the medical appointments as light and entertaining as possible.  I got a bunch of really great suggestions.  Here’s a few that I will have to try and slip in:
1. From my good friend Sarah “Try to use a ridiculous vocab word in a sentence while keeping a straight face, like carperpetuation or kattywompus . . . something to make them laugh.”
2. From my sister Teri “Take a different kind of juice in with you each time and when they ask for a urine test, poor the juice in the cup and drink it or act really offended when they look at you weird.”
3. My buddies Adrienne suggested a sequined glove, Jeff said a smelly shoe and Erica a monacale. Especially if I need to look at labs.
The ones that I really liked that I thought would be the easiest to consistently pull off was from Melissa who suggested handing out stickers and Bethany who suggested well placed temporary tattoos.
I mentioned this to the party guests if they wanted to make a donation to the cause in lue of a regular gift and boy did they come through!

I’ve got all kinds of stickers and tattoos!  Plus some groovy glasses 🙂

Thanks to everyone that came and made it a really great night!
So great in fact, that I think I overdid it just a little and was in bed all afternoon.  Doh!  It was so worth it though.

Sooo, on another note – tomorrow should be the day.  Hopefully.  Finally.
I’m nervous.  Ready to get on with whatever, but I’d be lying if I said I wasn’t a bit scared. Thankfully I’m so worn out from yesterday I should still sleep like a baby tonight.
I will post as soon as I know something.  Stay tuned and get ready to pose…