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.

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.

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.

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.

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.

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!

Janie

So back on that kayak trip that I keep saying I’m going to tell you about, I had 3 roommates. Acid, Peaches and GI Jane.  We sound like  bunch, don’t we?

GI Jane was a 6 or 7 year stage IV survivor (I’m actually not sure. I thought she said 6 but another post said 5 years and that was 5 years ago? So to be honest I just know it’s been along time).  She had been through a lot!  She had so much chemo apparently it effected her hearing.  The things that she thought she heard were down right hilarious.  She made me laugh.  And laugh.  And laugh some more.

One night at about 2 or 3 in the morning I heard someone rustling around.  It was very dark in our room and I didn’t want to put a light on to wake anyone.  I wasn’t quite sure if it was a person or not so I was getting a little freaked out.  All of a sudden I felt something on my foot that went up my leg.  I was about to let out a scream but I quickly realized it was a person.  It was GI Jane trying to make her way to the bathroom.  We had a good laugh about it.  I guess I made her laugh so much that she awarded me the “comedy” award the next day.

She had this amazing spirit.
We were on this road that was actually a bridge with a 20 to 25ft drop to the river below.  People in our group were jumping off of it.  It was the end of our journey for the day and a bit of a “rite of passage” for the group.  Of course it was optional but most people were doing it.  Janie wasn’t quite sure what was going on and with her hearing she was trying to make out what was happening.  “WERE JUMPING”  What?  “J-U-M-P-I-N-G”.  Oh!  OK!  and she hopped up on the ledge like it was nothing and jumped.

From the bit that I got to know about GI Jane, I know she was a fighter and as we parted ways from our week I heard about her plans for the future.  She was looking forward to doing more adventures like the one we just had and was going to take life by the horns and live it.

I’m not entirely sure what all adventures she had, but I heard a couple of days ago that she was put into hospice care.  As of today she hasn’t eaten or even had anything to drink in a few days.  Someone in her family said yesterday that probably for the first time in her life she was unresponsive.  She will transition soon.

I made this video.

Mostly for her family, but also so everyone could meet the Janie I met.  So you could see a little glimpse of her beautiful soul.
I’m going to miss Janie.

I fucking hate this disease, so much.  So very much.

Update: After fighting the incredible fight, Ann passed from life to Life on Thursday, January 30, 2014.

two years

Over 1 million minutes have passed, but I remember the call like it was yesterday….

The doctor (who was not my normal doc) called.
My favorite thing he said was, “you’ll be OK.  You’ll probably have to do some chemo and everything will be fine”.

What?!??  Well, you can go back and read it.  But you can imagine how that feels.

I’m still here!  I would love to find that doctor so he could see how well I’m doing.  I’d give him a big hug and then punch him in the throat.  “Some” chemo – my ass.

It’s hard to believe it’s been that long already.  Honestly, it scares the shit out of me.  Time is fucking racing so fast I can’t really deal lately.

The other day I remembered that it was two years ago I started this journey with you here in blog format and I wanted to do something special.  I wanted to change the cover and move everything over to my newly purchased web domain space and all kinds of other fun stuff.  I’ve never been good at deadlines and getting things done on time so it’s not super surprising that I put it off and didn’t get it done.  It’s not even a shock that I’m throwing this post together at 2am.  The next day.  It’s not even the anniversary anymore.  It was yesterday.  I suck.

I’m doing fine.  Physically I’m probably the healthiest I’ve been since I was diagnosed. And BUSY.  Just super busy and while I enjoy getting out and living my life it gets overwhelming sometimes. I don’t HAVE things to do other than 2 video projects and 2 photo projects.  I’m not buried with work but it feel like it.  I’ve been kinda freaking out.  I can’t really sleep but I’m not super productive with my night time either.  Everything is whizzing by so fast that I sit here stunned sometimes.  Trying to hang on. At the same time I’m scared to slow down.  I don’t want to miss anything and I don’t want it all to stop.

There’s so much going on I don’t even know where to begin to catch up.  I will.  Or maybe I won’t.  Who knows?  I certainly don’t.  My doctors certainly don’t.  Guess that whole “you have months left” thing is over since it was mid-October when he said that.  They don’t know what to do with me.  My numbers snapped back and I’ve been able to go back on chemo.  I’m not at full doses but so far my remaining tumors are stable and haven’t spread anywhere else.  We’ll just keep going with it till it doesn’t work anymore, I guess.
-No, I don’t entirely know what’s going on because I’m choosing to not ask again.  I think it’s better for me to not know right now.  I don’t want to go through the panic again.  I don’t want to feel like I’m waiting for the shoe to drop any more than I already am.

So I’m planning fun stuff.  Were getting tickets to Greece this week with a possible London layover for a few days.  I was chosen to go to surfing in Hawaii for a week with Athletes for Cancer and maybe a kayak trip in Montana with Mary Jo.  Trying to work out a trip home to take the kids to the cabin and get to spend some quality time with family and friends in Michigan.  Still have Disneyland passes to wear out and I’m going back to LA for another taping of the Big Bang Theory on Tuesday.  I have my wife, my projects, my art, the kids, the cats and the dog.

I will blog when I can and want to.  I do want to, but I’ve been putting it off.  I’m avoiding talking a little bit.  I admit it.  But I have to say that I so appreciate having the outlet and the amazing support you all give.  It’s made a huge difference.

So I’m sorry there wasn’t big bells and whistles and confetti coming off the page.  I’m sorry that I’m not feeling very chatty lately and I’m busy.  I can see time coming up where we don’t have much planned and I’ll probably end up pacing the floor.  Encourage me to write.  Please.

I love you all and I love you for hanging with me on this crazy journey.  The last two years were by far the best and the worst all wrapped up in one deranged little story.
Thanks again and I hope to see you at 2am, January 20, 2016, when I’m throwing together another missed anniversary post.

Helping a friend

So remember that amazing kayaking trip I went on that I haven’t told you all about yet other than it was super rad and totally changed my life?  Well, here’s a picture of our group:

Looks like a fun group, huh?
I swear I’m going to get to telling out about it.  I really am.

Anyway, this is “Lefty”:

Yeah, so she’s one of my buds from that crazy week. Lefty is trying to raise money for the organization that made that trip possible, First Descents.

It costs about $1000 per person for the week we are there and they provide that experience to those of us who are battling cancer or have been on the front lines at no cost to us. When you are dealing with cancer, there are a lot of bills to pay and they don’t want money to be an obstacle for someone to miss the chance to be reminded of what they are capable of. I left that week able to reclaim a lot of what I thought cancer took away from me. It’s an encounter that everyone who is dealing with cancer should be allowed to have.

If you want to know a little more about it, check out this video from the First Descents website:http://firstdescents.org/documentary/

Or check out a little video I made from my week to share with the young survivor group I attend:

Donations to this organization are extremely valuable. I know that everyone who works for or participates with this group will be extremely thankful for your generosity.

Lefty has been struggling with people who said they would donate but haven’t.

Sooo, I’m gonna help a friend out, make this a little fun and put a challenge out there to you all…

***I will match any donations made to Lefty today, Saturday, January 11th, 2014, up to $800.00. ***

So even if you can just spare $5, you’ll be making it $10 for FD.
And to make it even more fun, for every donation made to Erin today, I will take some kind of silly picture of a sign of what you donated and post it here.
**This offer is also only good for donations made to Lefty today, Saturday January 11th, 2014.**

So get out your credit card click the link below and let’s send some cancer peeps down the river, up the mountains or across the waves. I GUARANTEE you will be a part of changing someone’s life.

Here’s her donation page:
http://tfd.firstdescents.org/site/TR/Events/General?px=1003741&pg=personal&fr_id=1040

Let me know if you have any questions.
Thanks!

Lefty, I hope this helps!
#outlivingit
<3,  Jazz.

Update:
We did it!  YOU guys did it!  You made me pony up the whole $800 and I’m more than happy to do so.  😀   Thank you, thank you, thank you.  But don’t stop there if you still want to help out!  First Descents can ALWAYS use the contributions.

2013 Rocked! Thank you.

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 13,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 5 sold-out performances for that many people to see it.

Click here to see the complete report.

So that was my blog’s 2013.  I really didn’t write much, huh?  I had a lot to say though.  I still do.  I know I keep saying this, but expect more from me.  I have all of these things bouncing around in my head but I’m either too tired or busy to make the post.  Funny thing is though, once I do sit down and start typing, it really doesn’t take that much time.

So I did it.  I lived to see 2014 and I couldn’t be happier.
Hard to believe it’s been almost 2 years ago that I started this fucked up, twisted, crazy ride with cancer.  But there were so many amazing things in 2013…

I turned 40 with a party in Michigan and another in San Diego.  Got to spend some time with A LOT of family and friends.
I had good scans and some shitty ones.  Health was up and down but for the most part I hung in there and I was able to do some amazing things.
I got to see a taping of The Big Bang Theory with Bob Newhart as a guest star.
We got Disneyland passes that got put to some good use.

I was in and out of the hospital with a few procedures but always supported by family and friends with visits, calls and texts that always made happy no matter how sick I was.
I ran a 5k for colon cancer and was one of the top fundraisers for the event.

I had one of my photos get an honorable mention in the San Diego County Fair.
I got to go on an amazing kayaking trip with a group of people that pretty much saved my life.  And yet I still haven’t written about it!  Geesh am I behind!

And I came home from my trip to this:

MJ and I had our wedding ceremony on May 29, 2010.  While we will always honor and celebrate that as our wedding, the proposition 8 ruling was finally overturned so Mary Jo and I could be legally recognized.  On July 8th WE GOT MARRIED!

In July I FINALLY got to get a glimpse of Comic-Con and it was amazeballs.  My sibs and I are going to try to go for real this year.  Wish us luck.

In August I was truly blessed by being able to take a dream trip to South Africa. I saw the beautiful country.  I walked a cheetah and saw a Great White Shark and it’s another big thing that I haven’t written about either.  I’m such a slacker!  Seriously though, it was also a life altering event and part of the reason I haven’t gotten posts out yet is because I really want to share the details of these trips.  I don’t want to slap a post up just because it happened so long ago and I need to catch up. But they are on my big ol’ to do list.

I got some ocean time in this summer and thanks to my friend Amy, I learned the joy and fun of Sea Kayaking.  We went out a few times and I had a blast.  I didn’t always stay in the boat but that was all part of the fun.

In October we said goodbye to a very dear friend and fellow warrior. Eric Poe who lost his battle with cancer.  He was, still is and always will be an inspiration to me.

My hair came back in and it was starting to really get some length to it until another new chemo regimen made it fall out again.  Got to rock the mohawk again for a little bit.

MJ surprised me one day with a super cool jetpack flight in Mission Bay.  I felt like a super hero!  I really got some height a few times.

Although I don’t write about them very much in this blog, there are two little people in my life that I adore and love very much.  They turned 9 and 11 in 2013 and they’re really growing up!  It’s so amazing and fun to watch them discover things about the world and about themselves.  Of course they have their moments, but don’t we all?  Kian “graduated” from his elementary school and he now goes to Magnolia Science Academy.  He really likes computers and robotics and he’s in an after school chess club He still likes to ride his bike but he’s also started riding quads with one of his friends who has a couple of them. Nalani is still on her soccer team and still loves it.  She’s really bonded with the girls on her team and started Girl Scouts in the troop that some of her soccer friends are in.  She’s been surfing a couple of times and likes to bake with MJ.

We went as Star Trek characters for Halloween and won a prize for best family costume at the Family Matters Halloween event.  I was Captain Kirk and MJ was the red shirt guy.  I thought it would be more funny if I were the red shirt guy but decided it might b too morbid for some people.  Not everyone has a twisted sense of humor that I do.

Starting early December my family started coming out to visit.  My brother David and his wife Ashely were first.  Just about a week after they left my other brother Matt, my sister Teri and her husband Adam came.  Then just after Christmas my Mom and Dad came and they’re here right now.  I’ve been having a blast with all of their visits!

For Christmas, Santa brought the newest member of our family, Luna.  She’s a 3 year old Husky mix and weights about 40 pounds.  She has the cutest howl and seems to be settling in really well.  I absolutely adore her.  I’ve been wanting a dog my entire adult life and I still can’t believe we now have one.  ❤

Right after Christmas our beloved Prius konked out.  We took the plunge into a plug-in car!  Super cool.  So far were still trying to figure it all out.

And I think that about sums it all up!  I’m sure I missed some stuff but that’s at least the important stuff 🙂  What a year, huh?  It was great.  I’m a little sad to say goodbye to it, but I am looking forward to 2014.

But I’m not going to lie -cause really, why would I start at this point?
I’m scared.

None of us know what this year will bring.  I know that.  But when my oncologist told me I likely had months left and that “deadline” has come and gone it scares the shit out of me.  I feel like I’m borrowed time. Looking back on this year in review made me really see how incredibly blessed I am and how unbelievable this year really was!  I’m overflowing with gratefulness, but I can’t get that nagging feeling out of the back of my head. How quickly this year seemed to fly by and I keep thinking about how quickly this year will go by too and when you time is limited, it’s extremely stressful to think about. But I’m working on it starting right now.  This is a new year and whether it’s “borrowed time” or not, I’m going to try and make the most out of every minute of every hour of very day.

Looking forward to what the year will bring and most of all looking forward to sharing it all with all of you.  There will be much laughter and probably a few tears, but through it all I know there is a lot of love.

Thank you all for helping make 2013 one of the best years of my life.
Now lets make 2014 just as kick ass!

Peace and much love,
Heather