It’s kinda a big deal

Five years ago today I quit smoking.

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I quit cold turkey and it was one of the most difficult things I’ve ever done.

I smoked for approximately 18 years and it is the only true regret I have in my life.

Since I quit smoking I’ve saved approximately $6939.10.  If I had continued at the rate that I was smoking, I would’ve smoked 36,521 cigarettes.  I can’t really wrap my brain around that.  When I first saw that number I thought, “what a waste of time”.  Yeah, time.
The extra money is great and it’s nice to be able to breathe easier.  I certainly don’t get as sick as often.  At least not from that.  And quite honestly if I hadn’t quit that day 5 years ago, I’m not sure I would’ve survived my initial surgery when I was diagnosed.
But it the misspent minutes of each and every day for 18 years that kinda get to me.

I don’t think it’s something that most people think about.  Even non-smokers.
Based on how many I was able to have in a break time session, it took me 5 to 7 minutes to finish a cigarette. I know some people can really suck ’em down and others can let ’em burn, but  for the sake of numbers, lets say it takes 6 minutes. Providing my math is accurate, that means in the last 5 years I would’ve spent roughly 152 days smoking.

Why is this a big deal?  Well, as you probably know, you can’t light up just anywhere anymore.  If you want to smoke you probably have to “go somewhere”.  Out on the street, into an ally, in a parking structure.  Not very simulating spots.  Do you see where I’m going with this?  All the time spent just starring at a shrub.

OK, 152 days probably is all wasted time.  Many smokers smoke at home and carry on doing the things they would’ve been doing anyway.  Work break smokers can be quite social and some people use that time to reflect and are happy to be in a corner alone.

I just think back to my smoking days and I can remember so many times being in the break room all alone.  Just sitting there getting my fix before the next 4 hour grind.  I usually flipped through papers, but truthfully it was boring.  Many times there were co-workers there to strike up conversation with, but many times not.  This was pretty much true for all of my jobs.

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What would I have done with my time had I not smoked?  Who knows.  Perhaps I would’ve wasted it some other way.  I just know that when I quit I felt like I used my time a little more productively.  Even if it was catching up on an episode of a TV show it felt like better time than just standing around killing my lungs.

Lets be very liberal and say that out of the 152 days, two thirds of the time is spent either socially or productively alone or whatever it is that makes the time not wasted.  That still leaves about 50 days of staring at a bush while sucking poison into your body. That you pay to do, by the way.

If you smoke you get hit with “that causes cancer”, “those are so bad for you”, “you just stink”, “why don’t you just quit already”?  If you are still smoking, maybe this is a new way to look at it.  I get it.  I’ve been there.  It’s hard.  But when I thought about this way, what I wouldn’t do to have those 50 days back.

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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.

Ishi Pishi

Alright, time to get a little real tonight.

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As I said in the last post, I’ve certainly had some shitty days and moments in the last few weeks.  I don’t really see how you can’t when someone tells you that you likely have months to live.  And, you know, someone with a degree and certifications and stuff.  Not just your neighbor.
Anyway.
What do you do when you’re told you have months to live?
I cried.  Hard.
I woke up the next day and was pissed it wasn’t a dream.
I looked at my “to-do” list filled with lengthy projects.  I erased a few things that I am never going to get to.

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Then I sat down and thought about my world without me in it.
Really thought about it.
I started thinking about little things, like a check list that one would go through prior to leaving on a trip.  And random thoughts came into my head.
Will the kids talk about my funeral? Will Mary Jo be pissed about having to go through all the stuff on the computer to find pictures she’s been looking for? Will my cat Leo cry for me at night and keep everyone up for a few weeks?  etc..
Of course I thought about heavier stuff too but it was the little stuff that really hit me.

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And then I remembered my kayak trip.

I haven’t shared all the details of that trip.  I intend to.  But for now I will share one part (of many) of what’s getting me through the toughest times right now.

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Our kayaking experience was whitewater class I and II.  Real stuff.
For a newbie like me it was a bit intimidating at times.  Scary even.
The crew that took us out were amazing and were looking out for us the whole way.  They started us slow and worked us up to the bigger rapids.

The last day of the week long trip included an optional solid class III rapid called “Ishi Pishi”.  It was after this big bend in the river.
That morning everyone started talking about it.  I think it was supposed to be a surprise, but people from prior trips had leaked it so some people already knew and started telling the rest of us. Once the conversation went that way my stomach started to turn.  This wouldn’t be happening for at least 7 hours and I could already feel my breakfast deciding if it wanted to stay.

It was a beautiful day full of fun kayaking.  But always in the back of my mind was Ishi Pishi.  “When was it going to be?” “How fast was it?” “Are they going to tell us before we get there?”  On and on and on in my head.  Nagging.
We eventually got to the bend in the river.  Our guide told us where we were, what to expect, how to do it and asked who was going.

I went.
It was awesome.
And that was that.

ALL of that worrying.  For nothing, really.

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That’s me, rockin’ Ishi Pishi.

Later that night we talked about our experiences of the day and I shared that I got so wrapped up in Ishi Pishi that I forgot to enjoy the river.
It was flowing and I was going down it no matter what.  I could fight against it, but it’s much easier to just go with it.  It also gives you the opportunity to look around. To not only appreciate the view but the company you have with you.

And this is what I would’ve missed if I hadn’t remembered to enjoy the river:

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One of the guides shared that Ishi Pishi is named by the Karok Indians and means “end of the trail”.   I found that very fitting.

It’s a very weird space to be in right now.  I’m trying my best to just live in the present and enjoy every day, but I can’t just ignore that the end of my river may have come up way shorter than I expected.  The best I can do is try to process all of this with the least amount of doom and gloom as I can.  I need to remember to just enjoy the river.

I decided last week that I needed a day to take off and deal.  So I am.
I’m taking the day on Wednesday and going to Disneyland.  If I have to sort out all of this heavy shit, why not do it at the happiest place on Earth?

Still waiting

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The next steps are to get new scans and get them over to UCSD to be presented to their tumor board.  Hopefully they will have some options for us and then we decide what will be best for me.  If they can do surgery but it’s super risky, we’ll have to make those decisions.  I’m still praying that there will be something for me that won’t be too invasive.

I got my CT scheduled for this morning but I couldn’t get a date for my MRI until the 27th.  Ugh.  And that’s just to get the scans.  Since it’s Thanksgiving week I likely wouldn’t get the scans over to UCSD in time for the following Tuesday tumor board so I probably wouldn’t be presented until December 10th.  Almost a month from now!  That’s a long time any way but when you’re dealing with someone who might only have months to live?  Yikes!  Super scary.
So when I showed up for my CT this morning I started going for it.  “Do you have any cancelations?” “How can I get an earlier date?” “Is there someone that has the ability to do something for me?”
A bald head and some tears did work a little magic and they actually got me in a couple of hours after my CT.  They even apologized to me that I had to wait around for it.  Hahaha  Are you kidding?  I’m just so stoked they pushed stuff around to get me in.
Tomorrow I will go pick the scans up and take them over to UCSD.  That should be plenty of time to get in for the Nov. 19th tumor board.

It’s been awhile now since the “new prognosis” was given and I can honestly say I’m doing better than I thought I would be.  I think I’m even doing better than when I was first diagnosed with the cancer.  It’s a very strange place to be in and maybe I haven’t fully processed everything?  Or maybe it’s because we still don’t really have all of the answers yet.  But I’m OK.

I’ve certainly had a few depressing days and I still have my moments.  I’ll talk more about that in the next post.  For the most part I’m trying to just get back to living.  Trying to make the most out of every day.
MJ surprised me with Jetpack flight in Mission Bay.

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It was incredible!  I felt like a superhero 🙂

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She’s the best.  She knows how to keep me going.  I’m not going to speak for her, but I can tell you that she’s doing OK too.  She’s an amazing support to me and I honestly don’t know what I would do without her.  I don’t think I would handle this journey very well I can tell you that.

Besides flying around the Bay, I’ve been going to my groups and classes and going to other appointments. I’ve actually been quite busy. A nice busy though.  A good distraction but not avoiding. I cleaned out my closet and working on clearing my office.  I’m almost done so I can spend my days doing artwork or whatever else seems like a good way to spend the day.

I’ve been spending a lot more time on my relationships.  Having conversations with family and friends. It’s extremely important to me and I’m really loving spending the time with everyone.
PLUS, we have video calling!  I mean, how cool is that?  It’s like the Jetsons!
If you’ve never used it, Google+ Hangouts are quite fun and a great way to involve a whole group of people.  If you are interested in hanging out but aren’t sure how it works, let me know and I’ll get you up and running.  I’m setting up weekly chat times and will post them. Join us when you can.

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Calling, texting and video chatting are those things that I always said I should do and then put it off.  I’m sad I have and I’m making the time now. And I can tell you already that I will never say that “I wish I hadn’t wasted so much time talking to my family and friends”
Try it.  I bet you won’t regret it either.

Live Long and Prosper

Happy Halloween!
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We did Star Trek (obviously). I’ve always loved Halloween.  I think it’s my favorite holiday.  But I’ll get into that.  I’ll start with the important news you’re probably here to see.

I got my second opinion today.
I was referred to a doctor at The UCSD Moores Cancer Center.  It’s a great facility.  One of the top places around here I could be going.  We haven’t been there yet because of our insurance and because it didn’t seem necessary until this point.  So why wasn’t I jumping for joy?  Well, the doctor I was referred to is a friend of my oncologist.  They are the same age and have about the same number of years experience.  This did not thrill me since they are both younger than me.  In some ways having the younger docs can be good since they might be willing to be open to new treatments, but they also don’t have the years of experience which is a little scary for me.  Especially now that I have an uncommon case.

My referral was chosen for me before all of the platelet dropping complications happened. Once it came up though I looked at all the profiles and credentials of the GI docs they have at UCSD and there were two that stuck out that seemed to maybe be a better fit for what we need.  One guy in particular specializes in portal hypertension!  I debated over and over for days about whether we should keep the appointment or just ask to get a referral to the PHT guy. I ultimately decided to keep my appointment.

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We met her this morning and things went well.  She wants to present me to their tumor board to see if they think I’m a candidate for resection or any other surgery.  She said she will make sure that the guy that I wanted will be on the board.  The other things she talked about were doing targeted therapy as well as seeing about getting me into clinical trials whether they are here or somewhere else that has a study that fits for me.  Basically she gave me OPTIONS. I’m cautiously optimistic, but it’s better than sending me off to hospice.  One phrase she used a few times was “we will be aggressive”,  She said I’m young and relatively healthy otherwise so she thinks there’s no reason we can’t go at some of these treatment options.

Now while this sounds like super amazing news, the reason I’m not singing about my miracle is that they need to take a current scan of me and make decisions based off that.  She gave no indication either way that they were going to be able to do anything.  Basically, I don’t want to get my hopes up.
This roller coaster of emotions is beyond difficult.  I can’t tell you how painful and draining it is to be on the edge of losing your life and what goes through your head to deal with that. I don’t want to think that they’re going to be able to get me 2 more years and then find out that’s not the case.  It’s too soul crushing.  I need to live day by day.  Enjoy each and every day for what it is and I can’t expect much more than that.

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Tonight we did our traditional Halloween.
Eight years ago I was working for a very dear friend of mind.  I was in such a lonely sad place at that time and she was an angel sent to watch over and guide me through it.  That first year I was with her I helped with Halloween decorations and then winded up coming over for Halloween.  We chatted while she handed out hundreds of pieces of candy.  It’s quite the trick-or-treating neighborhood.
Anyway, it became a tradition for me to go there every year.  And the first year I was with Mary Jo she respected my tradition and came with me.  The kids started trick-or-treating around the neighborhood while I visited with my friend.

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I picked the cheesy picture above because she loves horses but also because it’s true.  She really pulled me through some tough times and continues to do so.  While I sat there tonight and chatted with her I thought about how much has changed over the last 8 years.  How wonderful my life has become and continues to be.  I’m proud and lucky and most of all grateful.  This last year was rough for both of us and as we shared with each other I thought to myself that 8 years is along time but not that long in the scheme of life.  It is in my life though.  What I went though in the last 8 years was amazing and I would give ANYTHING to have 8 more.  To sit and chat with my friend on Halloween 8 years from now about how Kian picked his college and Nalani getting ready to graduate High School.

You (yeah, YOU reading this) will probably be here for Halloween 2021.  What was your journey from 2005 to now?  Can you imagine what you can do in the next 8 years?  Whatever it is, do it.  You have the gift of time, take advantage of it.  It sounds so cliche, but it’s so true.  I will likely not be celebrating with you in 2021.  I hope to be and I don’t rule it out, but I don’t have the same odds as you.  So how will you spend your day tomorrow?  Or next week?  I know that I am spending mine different that I was 8 years ago.  It’s so easy to take advantage of the day, just do me a favor, and try not to.  I will too.  We can remind each other.