Rollercoasters and Arcades

Everyone has bad days.  Especially people with cancer.  I struggle sometimes with what’s a normal bad day and what’s a “cancer” bad day.  Today was definitely a cancer bad day.

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This morning my wife calls to tell me I need to find people to pick up the kids while I’m on my trips or I need to pay for care.  I call to see about care and it’s fucking expensive!!  Like ridiculous! Who pays that?
As I was frazzled and frantic about that I got another phone call that was from the clinical trial nurse at SHARP telling me there was only one spot left in the trial I wanted to get into so I would need to hurry and sign the papers.
Arghhh!!
I hopped in my rental car (mine is in the shop from an accident) and I sped, yes, I literally sped, to SHARP to sign those papers.
Once I got there, Jackie had to go through a stack of paperwork regarding the study because I wasn’t allowed to sign it without knowing what I was signing.  Which, of course, is a good thing.  Especially when she tells me that 2 out of the 97 people who have taken this drug have died and one of them died from bleeding which is something I’ve been having issues with.
I hesitantly signed it knowing I could back out if I needed or wanted to.  It was still quite scary.

I was all kinds of frazzled from the day so what does one do when they are?  Go play some arcade games, of course.  So I headed on down to Belmont Park.  It’s on the pier here and is a place that has not only an arcade but rides and shit food and everything one would want in fun.
There is this game I was introduced to when we stayed in the hotel in Frankenmuth.  It’s one of those coin pusher games and because I cant describe it, I’m just going to link a video so you can see this damn game:

So I threw 10 bucks into this machine and thought about the trial and whether or to do it and what I was going to do if I couldn’t do it and what was I going to do about the kids getting picked up and blah blah blah.
It was a nice stress relief.  A LOUD one.  And now I have enough tickets to get a “Game of Life” game.  My favorite.
And what goes best with video games?  Crap food of course.  So I bought myself a pretzel and a Coke and cried my way home to pick up Nalani.

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Long story short, I didn’t get into that trial.  And I cried about it.  Even though I do think it was for the best.  I had a bad feeling I would be one of the ones to have a reaction to the drug.  I’m still not sure what I’m going to do about the kids, but I’m sure that too will work out.  It was a rollercoaster day even though I didn’t get on the one at Belmont Park.  I should have just for the symbolism but I’m not THAT cheesy. Plus it cost like 6 bucks.

First Descents

I never really wrote about this experience.  I made a couple of trailer videos.  I had every intention of making a full video and I still haven’t gotten to it.  Hopefully I will.  It has just slipped on my priority of things to get done.  Here is the trailer for those that didn’t see…

It was a life changing trip for me.  When I was diagnosed, all of a sudden there were all of these things I “couldn’t” or “shouldn’t” do.  Can’t lift things.  Can’t eat sushi.  Careful about traveling.  Everything became big and I started to play into “being sick”.  That I would need to rest often and I wasn’t able to do things that others were able to.

Well all of that changed on that trip.

The first day when we were learning how to flip and learning how to paddle.  I still thought I was weak and had to sit out.  This is me sitting with Uncle Pete because they still made me “get into the boat”  I wasn’t going to get out of participating.

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This post will have a lot of pictures btw.

So I learned how to do everything that would make me successful on the river.
I learned how to flip.

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I learned how to deal with the equipment.

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I learned how to rely on others.

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I fell in love with some people that made me laugh hard.

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This is Sailor.  He had colon cancer too.
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These were some of our guides that were amazing in taking us down the river.IMG_0832

Some people went in the water.IMG_0614

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This lady made me LAUGH.IMG_0206

So did these two.P1410611

I learned I could do things I never thought I could.

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Most of all, I had fun doing it!

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And got to know amazing people.

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It unfortunately didn’t change the fact that we had cancer and we lost a very special person a few months ago.  She was my roommate and my friend and I hate this fucking disease for taking her.  I miss her beautiful smile and her amazing laugh.

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I love this shot of Pica helping Jane.  It’s so much IMG_0102

There was only one thing I couldn’t do due to bleeding.  I’m still a little sad I couldn’t of joined because it looked amazing.

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There were moments that we were able to be very raw.  One day we wrote all of the crappy things we hate on a rock and we threw it into the river.  It was very freeing.

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And I met friends that I will NEVER forget.  We bonded that week in a way that’s very special and doesn’t happen that often.

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The thing I’ll remember most is to enjoy the river.  The end rapids was huge and I was nervous about it and worried about it to the point that I realized I wasn’t enjoying the river as I went.  My end will come so there’s no point in worrying about it.  Just enjoy the river as it comes.

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I have another trip coming up that will be a bit different but I’m sure just as impacting.  I’ve been trying to raise money to “pay it forward” so someone else can enjoy the same trip that I am about to do.  If you can spare $5 or $10 even $25 it would be much appreciated!

Click here to donate or see the video.

Thanks for watching/reading.  I’m sure there’s more that I will think about the adventure so you may have to tune back in :D

 

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 :D

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.

Health Update

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It’s been awhile since I’ve shared so here’s what’s going on:
Not much.  
Which is probably the best news possible!

Since my last update I took a trip and was totally fine for it.
One I got home I right away had a procedure called a liver cryo ablation. It’s where they stick super cold balls over the tumors in my liver and freeze them.  It’s so cold that the tumors die pretty much right away.  I did wake up with an unexpected chest tube, but they checked me the following day and sent me home.  All seemed to go well and they blasted the remaining 3 tumors in my liver. Yay!

Once I was home a couple of weeks I still didn’t feel well and was having a very hard time breathing.  It hurt to take a full breath and that’s if I could even get one.  I ended up in the ER and they found fluid on my lung.  Not IN my lungs but in the pleura around my  lungs.  I had what’s called pleural effusion.
They ended up sticking a big needle in my back to drain it.  After the first liter they switched out bottles and set that one in front of me.  A liter?!?!!  Out of my lung?!??  And they got another almost 1/2 after that.  It was weird.  And warm.
After sending me home that night I had to be rechecked the following day.  The fluid has returned and I had to check into the hospital to have another chest tube placed.  Not my favorite thing in the world.
So apparently during the cryo procedure, they had to move my lung out of the way and it didn’t like that.  So it start building fluid.
While I was in the hospital the drained another 2 1/2 liters over 5 days.

Since I’ve been home I’ve been OK.  There’s tumor growth again so I had to start a new chemo regimen.  It’s one I’ve already been on but it doesn’t make it any easier.  I’m quite frustrated these tumors are so pesky.

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Part of what I really need to do now is get my diet on track.  It’s the only thing I can really take control of but it’s the hardest.  I have a really hard time staying away from sugar and that’s probably the worst thing I can eat right now.  I need to develop some kind of strategy but I have no idea what.  Every time I try I wind up doing a secret 7-11 chocolate bar/donut run.  It just needs to stop.

I still have a little bit of pain in my lung which makes it hard to get out to do some walking.  I’ve been moving through it, but I’m certainly not motivated to get out all the time.  Luckily my sweet doggy gives me those big eyes.  She can get me up and out for sure!

The Sting of Preparing

I think one of the first things that crossed my mind when I understood I have a very serious cancer was all of the milestones I would miss in the kids lives.  You can’t help but hurt about it a little bit.

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Since then I’ve been telling myself that I should prepare for it.  Get cards and write notes for the major life events that I will likely miss.
I’ve been putting it off for one reason or another but decided today was the day.  I think mostly because I feel great today.  I would rather do this on a day that I physically (and mentally) feel awesome than on a day where I feel like I’m squeezing it in because my health is failing.  I’m sure I will have better things to say to their future selves when I’m feeling very much like I’m still in the game.  And hopefully I will get to deliver as many of these in person as possible.

Even though I’m on top of my game today there is still a very weird feeling about buying cards for events that won’t happen for another 10 years or more.  Hopefully MJ will remember to hold on to them.  She’s not one to keep ANYTHING around so this may be quite a challenge for her.

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I walked into the Hallmark store with my list of life events.
Birthdays, Graduations, Wedding, Baby.
Everything I could think of.
There were three extremely friendly and overly helpful older women working there.  Not sure if they were bored or just really good at their jobs.
I didn’t want or need help.  I was trying to avoid it actually but they kept checking in every few minutes. “Finding everything OK?”  Ugh. Yes. Yes, I am.

I finally got all of my cards and dropped them on the counter for checkout.
The woman immediately made a comment about buying quite the stack of cards.  I didn’t say anything right away but thought to myself, “It’s been awhile since I’ve made people feel awkward!” so I told her that I have cancer and was getting cards for my kids major life events.  BAM.  Silence.
Then she put her hand on mine and told me how sweet that was and blah blah something else.  Anyway.  I guess I would’ve expected them to see more people card shopping for future events but I guess not.
(BTW…  In case you were curious- for cheaper cards for two kids major life events, it’ll run about $35.)

So now I have a bunch of cards to write and I have no idea what to say.  I’m sure it’ll come to me as I sit down and think it out.  But it’s weird.  It’s weird writing to a kid that you know as a 12 year old who will be 18 or 21 or maybe even 28 by the time he reads it.  Plus it just makes me think about what it’ll be like on their wedding day and I’m just sad. Right now part of me is so proud of myself to get this done and the other part of me is just bummed out.  So much for being prepared.

Crappy Birthday!

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Yes, it’s my birthday!  Or, well, it was when I was going to write this.  I fell asleep.  Sounds like I had a rawkin day, doesn’t it?

Well, truth?

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Yeah, not so much.
How’d ya guess?

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It’s not that anything bad happened or that I didn’t do anything special.  It was just a tough day.  Another in a string of tough days.  Birthdays don’t always override the sad.  It’s going to be there.  Celebration or not.

So what is the sad about?
Well?
I’m not entirely sure.  I have some thoughts, but I don’t know if that’s what it really is or if that’s all of it or if it’s a “duh, of course that’s it” so that’s why I woke up at 12:30 in the morning to write this. (And 12:30 am the next morning to finish)

My birthday was actually OK.  It wasn’t anything crazy but I didn’t want anything because I had the ginormous blowout last year.  I’m still recovering from that craziness!  I just wanted to hang out and have a low-key day.  And I did.  Kinda.  Nalani was home from school today, so we did some stuff together.  Watched The Dog Wisperer and painted.  We had fun.  I got to go to my art class and we all shared our sadness. It seems to be going around. But I’ll get to that.
MJ and I ate diner, picked up the dog from the groomer, watched the olympics and fell asleep on the couch.  WHoo Hoo!  Do we know how to throw down or what?

So back to the sad thing…

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We have time to share about how were feeling in my art therapy group every week.  The “therapy” portion of the group.  As we shared I realized that Ann’s death (Janie) hit me harder than I realized. I also have a friend from high school who has stage IV breast cancer who got some bad news this week.  It was so hard to hear.

After talking in group, I realized I’ve been starting to feel down the last couple of weeks.  Just a sort of blah.
I have been starting to have more pain again and had to go back up in dose of my pain meds.  I wasn’t very happy about that and figured it has a little to do with the blues.
I’ve also noticed my recovery time from chemo is getting longer and longer and it’s been hitting me harder and harder.  It’s super frustrating.  Makes it hard to plan anything because I’m not exactly sure how I’m going to feel.  I don’t mind sucking it up and doing stuff even though I feel like crap, but I can only take so much.
And I think feeling that way made me take a quick look at the fact that eventually a day will come for me when I can’t do it anymore.  When I will fail.  I’ve never really had those thoughts before and they are the saddest, scariest thoughts I think you can have.

I think there are two other big reasons for my blues too.  I have a new scan coming up and it’s on March 4th, the second anniversary of my surgery.  TWO YEARS ALREADY.  That totally freaks me out.  When you are a person with limited time, you’d like to think it would go by at a little more of a leisurely pace.  It’s terrifying to think about how quickly that went.  In cancer world everything is measured by “the five-year survival rate”  Statistics are evil little bastards and even though I don’t believe them, I know what mine are and they creep up on me sometimes just to scare the shit out of me.

I’m not super worried about the scan but I’m not thrilled to be getting it.  I’m pretty sure it’s going to tell us that I’m either stable or I’ve had slight growth.  Based on the new pain I’m having I’m doubtful that it’s going to show shrinkage.  I am hopeful that there isn’t any new spread.  I try to hang on to that thought.

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I saw this picture on a website the other day and I thought, I have been riding the cancer roller coaster and some days I just want off!  But when I looked at this picture, the girl laughing caught my eye.  Even more than the hilarious face on that boy.  When I saw the laughing girl I realized that a roller coaster doesn’t always have to be scary.  It can be fun.   I don’t talk about it much because it’s such a personal journey, but I will say that I see God as my lap bar, so I can throw my hands up in the air and laugh and laugh as the dips and turns come and go.  Much easier said than done, but it’s got to be better than screaming and crying in fear.

State of the Heather Address

Hello my fellow warriors.

In the theme of this week I felt like it would be a good day to get you all up to speed on where I’m at medically in my journey.  I know there are a lot of questions out there and hopefully this will clear some of those up.  It my create more.  I’m not sure.  We’ll just have to see.

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Well, for starters, I’m still alive and I still have cancer.  Yep. I am still kickin, but that shit is still there.
Obviously the GREAT news is that I passed that whole “few months” prognosis back in October. And the good news is that my tumors have been stable.  Yes, that’s actually good news.  The cancer can either be responding to treatment, stable disease or not responding to treatment.  As long as I keep going with the first two, things are alright.  Of course I’d rather be responding, but I’ll take any good news I can get.

The not so good news is the complications that triggered the poor prognosis in Oct.  I’m going to try to explain it best I can.  I’m not even sure I understand all of it.

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So I think I’ve got you up to date on everything except why I’m still here. Right?  I don’t remember even mentioning here that back in November, UCSD ended up agreeing with SHARP on the crappy prognosis, so my hopes went straight down the tubes for awhile.  I was DE-PRESSED.  Had to really start putting my affairs in order.  My family staggered visits out to spend some time with me.

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It was great spending time with everyone and it really took my mind off of everything, believe it or not.  I did have to have some tough discussions with everyone, but we got through them and it was all still OK some how.  We never let that bleak outlook get in our way.  We went to Disneyland, Mexico, golfed 18 holes, ran the dog at the beach.  We just did it.  I did it.

The weeks went by and somehow my numbers popped back up enough for me to continue chemo.  Not at the full dose, but any treatment is good treatment, I think.  My numbers continue to be the same and we just keep going with it.  My oncologist seems to be a little stumped, but hey!  Good!  Cause I’m here and I feel great and I’m out doing doing stuff!  The dog, my love, has been getting me up and out.  I’ve had more exercise with her in the last month than I have in the last year.  She just has to look at me and I’m leashing her up to go.

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So at this very moment, here’s what I know about my medical conditions:
I still have portal hypertension.  It doesn’t go away.  In a nutshell, the portal vein is a big blood vessel that goes through the GI tract and spleen to your liver.  This blood carries the nutrients from food to the liver to process and filter toxins.  So it’s pretty important and when it gets backed up, really bad things can happen.  You can read more about it here
—->  Portal Hypertension
When I was first diagnosed, my cancer was quite advanced and I had a lot of tumors in my liver.  A lot.  So much so that he wasn’t sure I would make it through my first month of treatment.  But obviously, I did.  And I kicked ass.  I kicked so much ass that I was left with a bunch of scar tissue in my liver.  The scar tissue started backing everything up which caused the pressure and the whacky vein issues I was having and why I was spurting blood out of my stoma. All related to the portal hypertension.
Now, my spleen is enlarged because of it.  Apparently it’s like twice the size it’s supposed to be and that’s what likely is eating up my platelets and keeping my counts down.  If it were just the cancer I was trying to fight, I’d be the A number one ass kicker!  I might’ve even had a clear scan by now. But it’s this damn complication that has made everything 10 times more difficult.
Basically, it’s all the scary shit that could happen from all of this that I’m trying to not think about.  I TRY to eat healthy (still battling that one, but doing better).  I try to get up and out and I try to stick to a routine as much as I can.  I’m trying to just enjoy life and do as much as I can while I’m still feeling healthy and I’m able.

That’s where I’m at physically.
Mentally? I’m a bit all over the place.

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It’s hard to not think about it sometimes, but I just have to.  Otherwise I would be a basket case all the time. I still want to believe everything is going to be OK.  I wanna know that I have 3, 5 or 6 more years even, but I likely don’t.  I feel like I’m going month to month right now and I might feel that way for the rest of my life.  I hate it, but I don’t know how to not think about it.  Part of that has to do with watching two dear friends in the same boat I am pass on recently.
It’s all very hard and I don’t want to talk about it much.  I’ll talk about it, but I don’t really share my deep stuff.  The REALLY deep stuff, like, how I’m feeling about what my last days will be like.  Will it be fast?  What happens next?  I imagine I’m having the same very normal thoughts a dying person has, but it doesn’t make those questions, or the answers to them, any easier to know that.
I have a hard time getting to sleep.  It’s been going on for awhile.  Trying to make myself get to bed, but it doesn’t always happen.  Like tonight.
So yeah, I need to get my ass to bed.

I think I’ve pretty much covered the basics.  If you have any questions, ANY questions at all, feel free to ask.  I don’t mind.  I will likely always answer.  If for some reason I don’t want to answer, I’ll tell you, it’ll be all good and that’s OK.

I’m looking forward to more adventures.  Please, lets plan them.

If we work together; if we summon what is best in us, with our feet planted firmly in today but our eyes cast towards tomorrow – I know it’s within our reach.

Believe it.

God bless you, and God bless all the warriors!