Keeping my feet down

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I was baptized today.

Now don’t go running off!  Just stop for a minute.  This isn’t as religious of a post as you might think, but it will have some Jesus in it if that sort of thing freaks you out.  No preaching here though, just my story.  Hopefully you’ll stick around long enough anyway…

Baptism

Like many of the people I know, I was baptized as a baby. Of course I don’t remember it as I was about a month old.  It was at St. Lorenz Lutheran Church in Frankenmuth, MI.  I would also end up attending the elementary school connected to that church.  I had a lot of Jesus growing up.  Almost too much.  Having the fear of God put into you at any age is frightening.  It’s a little damaging at 6.
As I entered junior high, we moved so we went to a new church and I started going to a public school.  No more memorizing bible verses and stories.  Whoo hooo!  My flight from the church way of life was beginning.  I was tired of having to do what seemed like extra work.  I didn’t like the teasing that some kids would do to us private school kids either.

While I was in junior high I went through the process that Lutherans call Confirmation.  I think we started in 7th grade and we would go to a Catechism class every week for almost 2 years.  At the end of this process we would take a test, be assigned a bible verse and we would reaffirm our faith in God and Jesus.
To be honest? I was pretty much over Catechism class.  It was on Saturdays and I loathed having to go.  The only reason I would besides my mother making me was so I could play basketball in the gym they had at the church.  I was completely burned out by the end and on the day of our big test, we were left alone for part of it and we cheated.  Yes, I am the kind of asshole that cheats on their Catechism test.

My relationship with the church and God only got worse as I got into high school and “uh-oh!” started to discover things about myself that didn’t follow what was acceptable at our church.  So not only was it horrible and painful enough trying to come to terms with my sexuality in general, now I’m going to have God super pissed at me.  So by the end of high school when I wasn’t parentally bound to go to church anymore, I didn’t.  I ran from it as far and as fast as I could.

The thing for me was that I didn’t need church.  I still had a relationship with God.  Rough and ragged as it was, I still had it and that was all I thought I needed.  I didn’t want to deal with the judgement and I didn’t want ANYONE to try and change me at that point.  Even God, I think.

I’m not going to go into the details of my spinout with life and God.  It would be very long and probably quite boring.  But let’sl just say that it did get ugly at times.  I was getting in over my head with drugs and alcohol and I didn’t want to be saved. I didn’t think I needed to be, but  Oh I wanted answers, damn it! I pulled into a cemetery one night so loaded I could hardly stumble.  I sat there in the rain screaming out loud, “what do you want from me?”  Cause, well, you know, a cemetery is a good place to go and have a fight with God, right?

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When I moved to San Diego my relationship with my girlfriend I moved out to be with  quickly dissolved and I was so alone.  Besides just not knowing anyone here I felt like I was the farthest away from God I had ever been.  Truly alone and I wasn’t sure how I was going to find him again,  or if I even could???  I started to have doubts about Jesus and questions about how did other religions fit into the world.  Maybe I should see what Buddhists do?  I had NO idea anymore.  Everything was lost.
At the first San Diego PRIDE parade I went to I noticed there were a few churches marching and had tables set up at the festival.  I had become so cynical that my first reaction to them were “why are they here?  They just want to change me!”  So I looked at their information with my “I’ve got my eye on you” attitude. I was not about to be brain washed.
I woke up one Sunday morning.  Tired.  Hungover.  Ready for that change.  Ready to accept that my relationship with God was shitty.  It’s not how I thought it would be and I needed help to repair it.  I was kinda hoping the process would be a bit more like a 50,000 mile tune up and and oil change.  But that is not how it went.
I found the closest one to my house because I’m that lazy. I walked into University Christian Church broken down and I tried to slip in with as little interaction as possible.  I don’t know exactly what it was that triggered me, but I started bawling like a baby right before they introduced the new people and asked me to stand up so everyone could see who I was. Awesome!  I felt like such a fool. But everyone there was so sweet and wanted to help.  I knew they couldn’t really help me though.  This was work I would need to do mostly on my own and it was going to be difficult.  This was between me and God. So armed with a cup of coffee and some kleenex, I started attending every week.  I realized that church was so much more than some bible verses and a sermon.  It was the lessons, the community and the support.   Everything started to change for me and I even met my wife there!

Once I was diagnosed of course, things changed again.  I had buried the hatchet with all of my relationships that I had baggage with and it was so freeing.  It was something that I should have done all along but of course didn’t until cancer pushed me into it.  The only person on my list that I didn’t get around to doing, was God.  I was still stuck feeling like I wasn’t worthy.  And now UCC unfortunately started to have troubles. The problems were severe enough that we decided we needed to leave.  It was starting to feel very scary because I really needed a strong faith community at this critical time in my life.  Where were we going to find that?
Long story short we ended up finding that community.  I felt like it was all very God lead in the process.  We basically had lunch with Colby which started the ball rolling to where we are today.

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I decided a number of years ago as I was repairing my relationship with God that I wanted to be baptized or something equivalent. I made this decision even before I was sick.  I felt like I wanted to acknowledge  everything as a consenting adult. I don’t think that cheating on my Confirmation exam proved that I was ready at 12 to make that kind of commitment.
I think that baptism is a beautiful act of acknowledgement and most people just accept that it’s just something that happens when your a baby.  I did consider for a minute or two that it might be wrong of me to be baptized twice, but I honestly really don’t think so. I’m sure there are folks out there that will disagree with me and that’s OK.  We will just disagree.

Once we had been attending Sojourn Grace Collective awhile and attending a study group midweek and once we started to really get to know the community I realized it was finally time.  I felt like it was going to be a safe and loving space for me to do this and so I approached Colby about it.  I wanted to do this in the Ocean.  That was extremely important to me.  I mean, come on, my last name means ocean!  Thankfully he was OK with that.

I was given the chance to share my story in church this morning and after we all headed to the beach. We were at a spot near where Mary Jo proposed to me.  That made it extra special.  Colby said a few words and under I went!  I must admit that on our way out into the water, Colby told me to make sure I kept my feet down so he would be able to help me back up.  So in my head I kept telling myself “keep your feet down, keep your feet down, keep your feet down!”  I was still able to listen to what Colby had to say before though.
I kept my feet down but my heart went up and out!
The whole experience was very freeing.  I feel like I’ve finally mended my relationship with God and I can now move forward.  That I can have a relationship that will be more full instead of feeling like I’m not worthy, and it feels amazing.

I just want to thank EVERYONE who’s walked this journey with me at any point in my life.  Family, friends.  The family I found at University Christian.  And even though we are no longer attending, my friends there will always have a big place in my heart.  I’d like to thank the wonderful friends we met while briefly attending Missiongathering.  We wouldn’t be where we are today without spending some time with the great group of people there.  And I especially want to thank everyone at Sojourn Grace Collective for being the incredibly loving and supportive faith community that I need at this point in my life.  Everyone needs and deserves one at whatever point in their lives and I hope everyone finds theirs.  I am so lucky and thankful that I did find mine.  Thank you for allowing me to be the first one to be baptized at Sojourn Grace and thank you so much Colby for doing the dunking 😀

The video above is from a GoPro camera that I wore on my wrist.  I thought it would be interesting to see and I wanted something recorded since we were going out into the water.  I didn’t want to totally focus on it either though so it’s choppy and all over the place at times.  I will be getting an actual video and pictures later that I will post when I get them.

The Hospital. Again.

For those of you that didn’t know, I was in the hospital again right before Thanksgiving.  I was in for 10 days and got out just in time to spend the holiday with MJs parents.

This hospital trip was long.  Very long.  Seems like I can’t just get in and out of there.  And if you’ve never been in the hospital, a. You’re lucky and b. it’s not very restful at all.

I went into the ER on Saturday, November 9th. I went in because I started bleeding from my stoma again.  (I’ll explain more about that in a health update after this post.)  I really figured I’d be in for maybe a couple of days.  Thought if they had to do the same procedure they did in May that they would probably wait until Monday when the IR guys are there.

So I was admitted and waited.  They weren’t going to do the procedure until Tuesday.  Sigh.  Oh well.  What could I do?
I was admitted to 4North this time because 1West (the oncology wing) was full.  I usually don’t like being out of 1West.  There’s a pretty big difference in how the oncology nurses treat you and handle things.  They put me on the list for a transfer but I never did get moved.  Worked out OK though.  I did have an interesting view out my window.

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Bonus was I did get to have the therapy pets come and visit.  They aren’t allowed in the oncology wing.  Had dogs come 2 different days and a cat on another day!  A cat!  It wasn’t a llama, Laura Dohrmann, but it was still pretty damn cool.

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I had friends come and visit which I always love.  Nice to chat and have company.  There’s only so much crap TV one can watch before completely going crazy.  We try to keep things as normal as possible for the kids when I’m in the hospital too which means MJ doesn’t usually spend a lot of time there with me. I do always forget to take some pictures when people come though.

Had the procedure on Tuesday.  They cauterized the vein that was causing the pressure and bleeding.  Last time they went through my groin which really didn’t hurt.  The pain I’ve been having since that time has been the skin right around the stoma.  I’ll get to that.
This time they had to go through my right side all the way over to my left and in doing so, punctured through my liver.  Anytime the capsule around the liver or the liver itself is poked, um, yeah. Uh, apparently it’s quite painful.  I ended up getting knocked out during the procedure.  I was a little rough once I came to.

But I was still able to enjoy my graham cracker and vanilla ice cream.

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OK back to that whole pain thing.
So yeah, remember when I said I had pain after the procedure in May?  It’s been chronic since then.  One dr thinks it’s nerve damage. Another thinks it’s from the vessels dying around that area causing something to something and yeah. I don’t really know and I don’t think they do either other than I have to take pain meds.  And I’ve been on quite a bit and some higher doses.  It can be quite painful.  If I don’t take meds at all or not enough it feels like if you scraped your skin open really bad and then rubbed pebbles and salt into it. Super fun.
Well now since I’ve already been on some higher doses of pain meds, the meds they’re giving me for the liver puncture pain aren’t cutting it.  I was in serious pain.  The screaming out loud kind.  They shoot me up with my all time favorite Dilaudid and it’s not even helping me sleep.  I’m miserable and my night nurse sucked.  There is just no other way to say it.  I’ve never really had an issue with a nurse there before, but she was just terrible.  She made me feel like I was being a big baby.  She would tell me that I already had a lot of pain meds and asked me why I was crying.  Then at one point she gave me a pillow to hug.  Yeah, a pillow.  By morning I could barely stand it anymore and was counting down the minutes until the shift change.  Right before the change it was time for me to have a dose of my pain meds.  Because my doses weren’t meeting my pain needs I was in agony the last half hour before the next dose.  I called her the minute I could have the dose and she ended up leaving me crying, sobbing and begging for someone to help me for 20 minutes.  I did end up filing a complaint later that day.  I was terrified I was going to end up with her again the next night.  Never saw her again the rest of my stay, thank God.

Pain management ended up being the focus of the rest of my stay and the reason I was there for so long.  They ended up putting me on a PCA that next morning to try and get me some relief that day.  A PCA is, well, pretty much the best button you will ever push.

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They put IV pain medicine in the pump and set it so you have control over administering your pain medication.  Basically, when that light turns green, you can press it at any time you need to and you will receive a shot of the pain meds.  Ahhhh.

Now that they had me to where it didn’t feel like there was a hot poker stabbing me in my side every time I tried to take a deep breath, I could get some rest and we could start getting me back on my feet.  I was even starting to look a little better.

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Since I had been on pain meds for so long and hadn’t been properly managed it was difficult for them to titrate and it ended up causing me to be there an extra 3 days.  I could’ve gone home, but the dr highly recommended me to stay there so they could monitor everything to make sure I had the right coverage.  In the end I’m glad we did get it worked out.  I feel like we’ve got a better handle on my meds now.
On Tuesday Nov. 19th, I finally got to go home!  TEN DAYS!  Whew!  Sleeping in my own bed was incredible.

Here’s a funny side story…

This is Gus.  Gus Glassmen.
Yup, he’s a gnome.
He’s part of the Glassmen Alumni Association.  He visits Glassmen Alumni and we take him around with us to show what were up to in our daily lives.  We take pictures with him and they get posted on his Facebook page.

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I was about to send Gus to the next person when I ended up in the hospital.  Since this is part of my life and what I deal with I brought Gus with me.  I had him in his container in my backpack when I checked in at the ER.  I figured I was going to be in the hospital for a few days so I packed clothes, books and stuff.
When you are admitted to the hospital from the ER they have to fill out a Patient Valuables checklist:

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I like how he included his name.  You know, in case they had an outbreak of “knomes” -as he put it.  They would know mine was “gus”.

 

Disneyland!

Hey there Heather!  You have stage IV colon cancer and you’ve just been told you only have a few months to live.  What are you going to do now?
I’m going to Disneyland!

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I took that day and I went to Disneyland.  By myself.
It was on a Wednesday with nothing else going on so the park was pretty bare.  I had to wait more than 10 minutes only twice.  Pretty awesome day.

But seriously, who goes to Disneyland by themselves?  I mean, that is kinda weird, right?
Well, I can tell you that I was not the only person there solo.  *side note – found out one of my friends was there (by herself) on the same day.  Crazy that we didn’t run into each other! Anyway…
I honestly had a really great day!  You saw the picture above.  Do I look at all sad?
But I can also honestly say that I’m not so sure I would’ve done this pre cancer.  I would’ve been too hung up about being alone and wondering what the other people in line would think about me standing there by myself.

My mom called while I was waiting for the new Cars ride.  It was too loud to talk so we texted.  At one point she asked me to send her a selfie.  Huh.  um, OK!

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I didn’t expect this request from my mom, but we were having so much fun texting and I was just having fun all around, why not? How about another?

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Which turned into this:

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And so on:

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I think there were a few others too.  It was simple fun.
Also something I don’t think I would’ve done pre cancer.  At least not so freely.  Especially now… with my cancer riddled body and all the physical effects it creates.  The worst for me are my chipped teeth that get worse and worse because I can’t get them fixed while in treatment.  They used to really make me wanna hide.  But it doesn’t bother me anymore.  And I had this great moment with my mom because I didn’t let it get to me.

The whole reason I went to Disneyland was to just get away for a day.  I needed to get out of the house and out of town even to try and process some of this heavy shit that has been building and building and building all the way up to the moment of that phone call with my oncologist.  How do you process that kind of information?  I can’t ignore it.  It was put into my brain.  So if I have to try and deal with this, why not at “the happiest place on earth”?

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What did I think about?  I’m not so sure I can really put it all in words and tell you exactly what it was like.  Of course I wasn’t all heavy contemplating life all day.  Obviously I took time to let loose, be amused and have a pretzel.
I don’t think I came to any conclusions really either.  Except maybe this…

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I need to lighten up on people who I don’t think are appreciating life.  I realize I’m a little bitter about not getting to have a long one and I can’t take it out on people.
I think we all judge people this way to an extent. For example:
“Dude spends all his time and money on cars”  Well?  What’s his story?  Did he and his old man work on cars together when he was a kid?
There’s plenty of people who are materialistic and put a lot of time and money into things that don’t matter, but I think there can be more to it sometimes that we need to think about. Don’t be so quick to judge.

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Another thing I thought about?  Time.  Of course.
The day went by soooo fast.  It scared me.  Every day whizzing by frightens me on some level.  Yeah, I know, none of us know when our time is up.  But I have shittier odds than most of you reading this.  I’m struggling more then ever on making future plans.  I feel like I can barely do what I need to do.

When I got to the park I had this big plan for the day.  I knew exactly where I was going and what rides I was going to get on.  When I got there I started out just as I planned it and about 2 rides into my plan I already deviated and went on a ride twice because there was no line and it was fun!  It only took a few more rides after that before my plan was completely gone.  Except, that I had planned on staying until 8 to see The World of Color” show.  At about 6:15 I get a text from Mary Jo asking if I was coming home soon because she wanted to watch the episode of Amazing Race we were behind on.  Arghh!
I sat for a minute to think about it.  I had 2 more hours of line-free rides to hit.  Even the Toy Story ride only had a 15 minute wait.
I texted her back   “If you ever have any doubt about how much I love you…”
And I left a crowd-free Disneyland to be home with the love of my life.
So maybe sometimes leaving the party early might not be so bad after all.

Reality Bites

Yesterday was “World Cancer Day”.
Any other year I may or may not have known and probably wouldn’t of cared much except to find it an interesting fact.  This year I spent it in a chemo chair. Painfully aware of why a World Cancer Day exists.

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I’ve been having all kinds of feeling as I’ve been trying to fundraise money for the Colon Cancer Alliance and looking at all the cancer research that happening and money being raised for it.  While I’m grateful, I’m worried.
When I ran with Team In Training to raise money for blood cancers, they always talked about “the race for the cure”.  Of course that always sounded important, but I didn’t realize what that really meant to those we were raising the money for.

I know some of you have Googled my cancer. My cancer at it’s stage is not good by the statistics.  Fortunately, most of those statistics are outdated and typically apply to old men.  There are more and more people who are living longer and longer, especially younger people it seems.
But here’s my reality…   By the statistics that exist and by doctors standards (including my own), I’m lucky if I live 5 years.  Personally, I’m looking to see 50 and anything beyond that is just super bonus living!
While that doesn’t sound great, I think it actually is.  Most likely if I had gotten this cancer 10 years ago, I wouldn’t of made it as long as I have already. Research and treatment has come along way in the last 10 years. So I pray for those guys in the white lab coats every day to find the next thing that’s going to keep me alive until another lab coat finds the next thing.  Of course I’d love a cure, but I’ll take what I can get.
It’s scary to think about my fate like that but I’ll just keep taking every day I get.
Worrying will get me nowhere.  It’s just wasted time, and feelings.
The kids were doing a writing exercise with MJ the other day and I joined in with them.  Here’s my little poem about it:

worry is gray
it tastes like bitter twigs
it smells like an electrical fire
it reminds me of dirty molasses
it sounds like crushing metal
worry makes me feel like running in circles

Who wants to feel like that all the time?  Besides, I think keeping as positive as possible and living life is what will keep me going.  Even if it’s just day by day.
This song pretty much sums up my feelings.  I couldn’t express it any better.  Thank you, Ingrid Michaelson:

So what does this mean to you?
If you yourself don’t have cancer or don’t have anyone close to you with it, it’s easy to not think about.  It’s easy to not think about even though there’s reports just about every day about things that are causing cancer.  It’s easy to not think about it even if you do know someone with cancer or are involved in cancer fundraising activities.  I did.
Until your doctor looks you in the face and tells you that YOU have cancer, you can’t really know how it feels.  Until you are sitting in that chemo chair or hunched over the toilet after a treatment or collapsed on the couch with fatigue, you can’t know.
But you might have to.  And that’s what I want people to know and why I want to get people involved.

Do you really know what your odds are of getting cancer?

Even if you think you know, PLEASE check this out:

(btw the 24,528 in the still shot is the odds of getting stuck in an elevator.  You need to see it to believe what the cancer odds are)
Doesn’t that freak you out just a little?  It’s terrible!
And that’s why everyone needs to be aware and take a stand!  Donate to cancer causes!  Do a charity race!  Volunteer time at a cancer center!
I can’t tell you how much I love going to chemo when I know the volunteer therapy dogs are going to be there.  And there’s a lady who comes and does massages and there’s art people.  There’s so much people can gain from everyones help.

But what we really need?  Is time.  As more and more people are diagnosed, more and more people are losing their battles.  We would like cures, but we need time and that costs money.  I hate that it does, but it does.  I understand there’s big business in medicine, but besides taking care of myself, I have to rely on this system and so do you.

I’m sorry that I get all preachy about this, but it’s only because I don’t want anyone to have to go through what I’m going through.  I don’t want to see anymore of my friends or family fall into the horrible odds.  I didn’t think it could happen to me, hopefully it won’t happen to you too.  Awareness is the key.

So please join me in this war against cancer.  Stand up for me. Stand up for anyone else you know going through this. Stand up for everyone who’s surviving with this terrible disease and even stand up for those who have lost their battle.

Let’s end this shit so there doesn’t have to be a World Cancer Day.  Let’s end it so we can celebrate “World Were Living Longer Than Ever Day”  or “World Cuddle Day”.  Whatever.  As long as it means no more suffering from this damn disease.

Peace and Love,
Heather

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.