You put yer weed in it

Some of you may not agree with this post or it may put me in a light you didn’t know about.  I know I’ve discussed this topic before but it’s been awhile and I know there are new readers out there.  I’m sorry if this shocks you so I will start out by saying, yes, marijuana is legal to use medicinally in the State of California, and yes, I do use it for medical purposes.  I have pain that I have to take prescription meds for that I would rather not and I also have issues sleeping that they have given me prescription meds for that I would also rather not take.  If a little marijuana can help I would much rather go that route.

OK, now that we have that out of the way, I can tell you why I’m even bringing it up.

Something funny happened on the way to the dispensary…

In order to get medical marijuana in the State of California, you need to have a doctor who is licensed to “prescribe” marijuana give you a stamped Recommendation letter.

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They are only good for one year and then you have to have it renewed.  A great way to keep all of these doctors in business.  It’s not cheap.  Oh, and for an extra fee you can get a card as well.  I’m still not totally sure what good it does but she totally did the hard sell on me to get it.

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My letter had expired.  My friend wanted to go to the dispensary in a couple of days and the doctor I had gone to before takes a week to get the letter to you, so my friend recommended a guy he had seen that gives you the letter in the same visit.  Sweet!  So a few days ago I went to see his guy and I just had to share the experience.

The office was in a kinda of industrial area.  The building was nice but a little bare.  The area around it seemed bare too.  No big deal.  Not judging the place based on that.  I brought all of my diagnosis papers figuring he would need to see them.  I had everything in a binder all ready.
I walk in and there was a receptionist who asked if I was there to see the doctor and when I said I was immediately threw a clipboard in my hands and told me to fill it out. Front and back.  Apparently they were getting ready to leave for lunch.

The sheet on one side had a bunch of questions asking about why I couldn’t sleep, what had I tried to fall asleep and if I had used marijuana in the past to help me sleep.  I do have trouble sleeping but I don’t remember telling her that.  Honestly I may have over the phone and that’s why she gave me that sheet, or that’s just the standard sheet they give to everyone and ALL of his patients just happen to have sleeping issues.
I finished filling it out and she told me to wait in the the waiting area until the doctor was ready to see me.

The waiting area was interesting.  There were articles all over the walls about milk.  Mostly about drinking raw milk, I think.  I think there were also a few about butter and there were 3 bumper stickers all relating to how 9/11 was “an inside job”.  I know how I felt sitting there, I will let you form your own opinions.

I was called back to see the doctor and he was pretty much what I expected to see.  And smell.  I found this picture of him online from 5 years ago.

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The ironic thing is that his practice is called “Anti-Aging Arts” but he looked at least 10 if not 15 years older when I saw him in person.  His beard halfway down his chest, his hair was long and all of it was grey.

He had all of his degrees on the wall.  He was a Graduate of Harvard & UCLA and a UCSD General Surgeon.  The guy is obviously brilliant, but I don’t know if he’s partaken of too much of what he prescribes or what.
I walked in, sat down, and he started talking to me about how I need to learn how to make this butter or a tincture.  As he was talking he put this dirty old cuff on my arm and took my blood pressure.  He continued to tell me how I need to smoke every day to make sure it builds up in my system because thats how it attacks cancer cells.  He went on and on and on about ghee and making sure I used “food grade” glycerine” and he would circle it on this paper.  For what?  What the hell are you talking about???

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He went on for about 10 minutes then asked if I had any questions.
Um, yeah…   all of it?  What are you talking about?
But of course I said no and he told me to wait back in the waiting area for my papers.

When I got back to the waiting area the TV was on and there were people talking in a town hall discussion style about milk.  I was ready to go.

She called me up, gave me my papers and I was on my way.
All of that so I could go to the dispensary today.  Totally worth the story and the trip to the dispensary!

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I just had to share because it was too funny not to.

 

Standing Os

Last Friday my wife and I went to see a play.  It was a cute play.  I wouldn’t say it was great but it wasn’t awful either. It was just, well, entertaining, I guess.  Once the play was over and the cast came out 2 by 2 for their curtain call, everyone in the theatre clapped, but there was no standing ovation.
As we walked to the car I mentioned it to MJ and wondered if the cast felt bad because they didn’t get one.  We weren’t sure, but we both agreed that we were happy no one stood up.  It seems like the last 6 or 8 productions of anything we’ve gone to there has always been a standing ovation and for performances I didn’t feel were worthy of it.  But you can’t really not stand when everyone else around you is, unless you want to look like a dick.  So I’ve been getting up when I totally didn’t think it was worth it.  But it’s not to say that I didn’t enjoy the show.

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So this whole standing ovation thing got me thinking about day to day life.  I certainly enjoy most days, but not every day is standing ovation worthy and I think I’m OK with that.  I think it’s a nice accomplishment to strive for, but let’s face it, even going to Disneyland everyday would start to get stale at some point.  You would start to recite all the lines from all the rides.  Some of them I can almost recite already not nearly going on a daily frequency. So I can only imagine.

Every day is a gift and I think we should try and appreciate it as much as we possibly can.

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But I think telling ourselves to “ENJOY EVERY DAY” just isn’t possible.  Not EVERY day.  And to be honest, life wouldn’t be as interesting as it can get if every day were perfect.  I do think it’s possible to enjoy “parts” of every day.  I think it’s possible to not let the not so good or even terrible things that happen to us not ruin our day.  But if we try to make every day a standing ovation, what do we do when there’s a REAL standing o?  I don’t think it would feel as genuine.

I think a good place to start is waking up in the morning and telling ourselves,”today is a new adventure and I am looking forward to where today takes me.”

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And as the day goes along, reminding ourselves that this day no matter where it’s heading, good or bad, is still a gift and even if it’s not turning out to be a standing o, it can still be pretty good.
I’m lucky.  I have a constant reminder of why I need to not take a day for granted.  Yes, I just said I was lucky to have cancer.  But the thing is I know how easy it is to get caught up in the bullshit of life.  Car has a flat, kids are fighting, money’s tight and bills are due, favorite show got cancelled etc.  The list can get pretty huge.
I know it’s easier said than done, but you don’t need to have cancer to make the most of every day.  In fact, you’re super lucky if you don’t!  Take each moment as it comes and now to get super cliche, but “don’t sweat the small stuff”.  It’s just a phone.  It’s just a broken glass.  Everyday we put our feet on the floor is a small miracle and maybe we should be celebrating more standing ovations.  But even when the day isn’t one, it can still be pretty great.

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.