Wednesday, December 2, 2015

Today!

Today is the day!  After seven months and eight days of having to poop into a bag, I might, with any luck, possible get to use the toilet like most other people.
I can go from this...

To this...

I will actually look like this after the surgery. I little stoma reversal and a bit of a nick and tuck in the looks department. I'll bet my five year old daughter will like the new me. My son and wife...not so much. 
I'll write more once I'm out of surgery. Been a long damn road...



Friday, October 30, 2015

It's been awhile...

Today is my forty-seventh birthday.  And I am at work.  I don't mind being here though.  You can look at things many different ways.  The difference between ordeal and adventure is attitude.  So for today, I am hanging out with friends in a building with sick people in it and we are not allowed to leave until 7 pm.  Sounds fun, eh?
They did buy me pizza for my birthday though.  Just love these guys and gals!!!

Had my last chemo dose on October 6th.  I'm just going to let that sit and soak in it's own paragraph.

Last week was a busy one for tests.  I had my cancer clearance CT on Monday the 19th.  Thankfully they found no cancer.  So theoretically, I am a cancer survivor.  Cancer survivorship they call it.   For now.  Talk to me in five years.  If still no cancer, then I'll start breathing a little easier.
Then four days later I had my sigmoidoscopy which checks the connections they made in my rectum back in April, that and they removed more scar tissue.  I requested to be knocked out for that this time.  Never again will I do that without drugs.  They doped me up good too.  Retrograde amnesia is a wonderful thing.  Hard time remembering what they said or did before and after the surgery.  Now that is the way to go.  Thankfully Jen was there to hear what they said. Evidently, the connections are good so on to the next test which was on the 26th.  Barium enema...
What can I say about this test.  No fun.  Painful.  Messy.  Oh the mess I made.  Why the pain you might ask?  Enemas aren't bad, right?  When your colon hasn't been used lately and then you fill it up with fluid, spasming can and did occur.  That hurt like hell.  Then the tube kept coming out and they had to put it in again and again and again.  Finally they taped it in place.  I got barium everywhere.  Nothing was spared.  Not even my socks.  Just plain old awful.
The enema study showed I have narrowing of my colon just before what is now my new rectum, which is really just colon that is stretched and sewn together to approximate my old cancerous one.  No leaking though.  My colo-rectal surgeon says it is concerning but recommends that I go through with getting reconnected.  Using the colon might stretch that area out and if not, I get yet another colonoscopy type of thing and they will manually stretch it out.  Jesus it sounds like I'm writing gay porn here.  Christ I hate this cancer and what it has done to my body.  I mean I was never a work of art but damn.
The past week or so has been rough.  Mentally and physically.  After the enema, I was done.  I couldn't bear one more test, not one more study, nothing.  Tired of fighting this fight.  Treating this type of cancer is so Goddamn invasive.  I'm just tired of being poked and prodded.  Everything is sore.  I had to expel well over 1 liter of barium out of my ass and it wasn't used to that.  Constantly going to the bathroom and once there, only 5 ml would come out.  Over and over again for 3 days I did this.  I am not use to have any pressure down there so the littlest amount sets off the alarm and off I run to the bathroom.  I highly recommend using those wipes with aloe.
I've been asked how does it feel to be done and cancer free.  Not sure how to answer that really.  Am I cancer free?  Currently, yes...I hope.  I do have to keep looking over my shoulder for the next 5 years (or more) and getting checked.  Par for the course.  There is a bit of me, the real pessimistic bastard part of me, that thinks the worst will happen.  But who can tell?  No one.  All of us are one colonoscopy or CT scan away from having someone tell you, "Sorry but you have cancer..."  I'm here to say that life doesn't end when you get told that.  Sure felt like that at the time though.  Dark days back in December and January.  Can't tell you how many nights the minutes turned to hours as I struggled with what might be.

Here is the office and bed where the pain is delivered.  I break out in a cold sweat every time when walking into this room.  They never tell you what is going to happen until your knees are touching your chin.  No one would show up if they knew what was coming.
See that metal bar?  My teeth marks are on that thing.
December 2nd is my surgical date for getting rid of my colostomy.  First surgery I have ever looked forward to having.  Of course I am concerned about my colon not operating correctly, me being incontinent of stool (pretty good chance of this especially as I age), and host of other things.  Once again this is pretty serious abdominal surgery and while I trust my surgeon, shit can and does happen.  All I can do is be healthy in mind and body for this next step in my personal war on cancer.  Onward, then, and fear not...

After my last chemo dose, I took my daughter to Camp Orkila on Orcas Island in the San Juans here in Washington State.  Ben and I have done this trip a couple of times before and now it is Sam's turn.  Twelve other dads and their daughters caught the Friday ferry and met up at the camp.  There we were joined by one hundred other dads and their daughters or sons from various schools across the region.  The forecast was for rain and cold.  We actually got mild weather with very little rain.  I called the YMCA (they own the camp) and requested a cabin with heat since my side effects were really kicking my butt.  They came through with a great cabin with our own bathroom and a central area with a huge fireplace.  The cabins here are normally very rustic.  By rustic, I mean no doors, no heat, no lights, and a good long walk to use the bathroom.  Score one for having cancer!
The ferry ride home.

It did manage to get rainy one night and we did Smores inside at our cabin.


The girls found the Snazzler!  This is an item (a stick man in this case) that is hidden in the camp somewhere.  I've done 5 or 6 of these campouts and our group has never found the Snazzler till this year!   Here they are basking in the applause of the whole camp!



Practicing for their skit on Saturday night!


Rock climbing!

Cook out on the beach!  We had salmon fresh off the fire.


Since June I have been going to downtown Seattle every Tuesday for chemo.  Now that chemo is done my Tuesdays have been spent sailing with my good buddy David!!!  Every Tuesday so far has been beautiful.  Good wind with no waves and most importantly...sunshine!




Ben saying goodbye to Oreo the cat from the goodship Antipodes.

Ben and I did another car hunting expedition early in September.  This time we drove a Camaro SS and then a Dodge Charger.  Loved the Charger.  Thought the Camaro was absolute crap.  Camaro had automatic trans and just an awful interior.  It was so uninspiring that we forgot to take pictures of it.  Ben did get to ride in the front seat though.  The Charger though...that car I would love to have.  Feels big and goes like hell.  Comfy also.  Ben loved this car the most maybe even more than the Mustang.  I think it was the color.  Electric blue.  The Dodge dealer didn't even haggle.  Wanted full sticker.  $49,000.  Before taxes!!!
We didn't scare the salespeople too much as the famed Seattle traffic conspired against us to set any speed records but we still had fun.  Up next is the Ford Focus RS.
The Focus RS is going to be awesome.  Huge power, 4 wheel drive, drift mode, etc.  Comes out next year.  Early next year.  We are signed up to test drive it already.
Ford Focus RS!  345 HP and 0-60 in 4.7 seconds.  Has 4 doors!  Not really my style but I'll test drive the hell out of it.
Charger with the "Shaker" hood option!

I'm told there is an engine under there.

A boy and his car!

They wouldn't let us take this out and even if they did, Ben couldn't come along as the Viper is a two seater.


Truth be told I would never buy an other new car.  At least not right now.  Too much money and I don't see the value.  But Ben and I have fun trying out different cars.

Last weekend I took Appa out with my parents and the kids to the Seattle Yacht Club outstation on Bainbridge Island for the 13th annual Halloween party there.  What a great time!  38 boats showed up with well over 150 people.  Mostly kids.  It was like an infestation!
I made a cheeseburger casserole for the potluck that was quite awesome.  Afterwards the kids dressed up and we did the haunted house.  Sam went through twice.  Ben once.  Then we strolled to the dock and trick&treated among the boats docked there.  Really fun.  Once again I have hardly any photos of Ben.  Grrrr.  His costume was a make up on the fly type of thing.  His real costume was still being made by his super cool uncle Randy.
Our Creeper pumpkin and "weird face" pumpkin.

Tinkerbell!

Appa is the middle boat with lights ALL the way around!

Action photo at the SYC playground

Sam just LOVES to color!

My little bat!


Now I have one whole month to rest and get ready for surgery.  I'm jogging again and changing my eating habits.  I was so hungry on the chemo.  I think it was the steroids they were giving me.  My weight is 181 currently and I'm looking for 175 or so.  Maybe they can do a little liposuction while they have me split open.

I can't begin to express my gratitude for the love and warmth that I've received from family and friends.  Even the RNs and MDs taking care of me at Swedish were great.  It's been a long, strange trip but I think I'm better for it.  I'm a bit more on an even heel.  I also try to listen and not just wait my turn to talk.  And finally patience.  I really try to be more patient.  It is hard for me but I think I'm getting better at it.

“Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity.” ~  Carl Jung



Tuesday, August 25, 2015

A bit of poison, a bit of sailing and...bunnies!

Been awhile since my last post. Not much energy but I want to get some of this down for me to read years from now. Hopefully. Maybe my kids will get a sense of me from this. If it goes pear shaped that is.  
Three weeks ago, more or less, I had to skip my chemo treatment.  I was having diarrhea really bad and had what we call in the medical field an "incident". I'm trying really hard to not let this cancer change my life too much. I want to play with the kids, have fun, work, and sail. I want to do these things.  My son Ben was at the boat with me and we inflated the kayak for a spin around the marina. If Ben wants to do something that involves floating on the water, I do it. Was having diarrhea all day but taking lots of fluids in and thought I was ok.  After paddling around for a bit, we came back to the dock and once Ben got out of the kayak, I followed. Barely.  Got on the dock, stood, and had my vision tighten to a tunnel about the size of a dime. I came close to falling in the 50 degree water. No life jacket of course. I could have drowned I imagine. This is what is called a near syncopal episode. I almost passed out.  Or "fell out" if you are from the south side of Chicago. Realizing I was going to have problems, I sat on the dock and just rested.  I didn't call my oncologist and boy did that pissed him off. Imagine a furious doctor shoving his pager in my face saying, 'See this magical device?  You call this number and this thing beeps.  I then call you back!". He went on to say nurses are the worse patients in the world.  I tend to agree. 
So since the chemo causes the diarrhea, Dr Gold withheld treatment.  It was all I could do to not cry. This damn chemo makes me weepy as hell.  I did stay and have a liter of fluid pumped into me to fill my tank so to speak.  Long story a bit longer, I now take immodium at the first sign of the runs and have the pager number on my phone. So far so good.  
Last week I got infused with the chemo but he withheld the "evil" chemo (oxaliplatin) till this week. Which I am getting right now. I've been weak and tired and also not sleeping well but basically doing ok.  At times I feel like I'm out of gas. I just get tired of fighting all the time. Fighting to look normal (for me).  Fighting to act normal (again, for me). Just fighting. All the time. However, I bounce back from those feelings and just soldier on.  Not much choice really. All I can say is I hope to hell this treatment works.  I have stuff I want, nay, need to do.  
To prove that it hasn't been all bad, I'll post some pictures. 

Chemo shirt last week.  Lee and John from Newport Beach got me this.  
Today's chemo shirt

Not this past weekend but last weekend on Sunday, I was sitting on the boat alone.  Kids gone to Jen's parents beach house, my parents were entertaining friends from out of town, and I decided I was getting the hell out of dodge. I said before that chemo makes me crave certain foods. Hot dogs and relish are currently my favorites. Hot dogs!  They probably gave me this damn cancer!  Anyway, I had hot dogs, buns and most importantly...
RELISH! 
Anyway back to me sailing Appa single handed, I left the marina under clear skies and a north wind blowing around 10 knots. I think it was about 2 in the pm.  Clearing the marina and hoisting the sails took a lot out of me but once the sails are up, it is easy peasy. While not Mustang fast, Appa can move a bit and she put her shoulder down and nudged the waves to the side as she made for Port Madison across the Puget Sound. We (the boat and I) hit 7 to 8 knots and I had a beer in celebration of all that can be good in life. 
There is nothing-absolutely-nothing half so much worth doing as simply messing about in boats.  I have no other words to describe the pure joy of a well sailed boat. 
The arrow points to Shileshole which is home. I sailed back and forth and then went to Liberty Bay and anchored. Was just a phenomenonal day. 
Sunset in Liberty Bay. Nuff said. 
Monday morning I raised anchor and had a hell of a time getting the anchor out of the mud. That is heavy, sticky bay mud right there.   Most of it slid off before I could get my phone and snap a picture. 
I managed to sail almost all the way home but got wiped out tacking back and forth and had to motor for a bit and rest. Oh well. Still was fun. 
Last Tuesday my mom took me to chemo. It was suppose to be the evil chemo but since I had the past history of diarrhea, they did the good chemo. That bummed me out. 
Today went ok. Got the oxcepliatin today. Aka evil chemo. Fingers tingling now and tear ducts along with saliva glands hurt now. Only while making fluid though. My brother sent me a picture of my uncle Gordon who died from lung cancer, what is it now, 3 years ago I think. That made me cry and it hurt. Heart hurt from sadness and tears ducts ached also. Weird drugs coursing through my system. 
Gordon circa 1974 or so. My brother Kristopher with the Mae West life jacket and the infamous dog Rumpelstilzchen. Rumple for short. Rumple is just in front of my brother.  Ah hell. I miss you Gordon...
 
This past weekend, I sailed with my good buddies JC, Chris, Brooke, Rich, Easton, and Kaley in the CYC sailfest Fridays. They have extra hotdog relish unlike Elliott Bay Downtown Series. No wind and they eventually called off the race but we hung out on the water and enjoyed the night anyway.
JC and Rich trying to get us moving in light to no wind. Me pointing at something. 
I really have to work on my smile. This is Chris and I. A better friend than I deserve. He is...simply one of the best people I know. He is my brother from another mother. Love ya Chris. 
Damn J105 behind us in the photo. 😀

Saturday my mom and dad came over to the boat and we took Appa out for a sail back to Liberty Bay and visited the town of Poulsbo. It was another stunning day with perfect wind. We managed to sail all the way to Poulsbo. Trust me.  It is hard to do.  Our patience was rewarded with a great sail. You sail the wind you have not the wind you wish for.   Life lesson there I think. 
Dad guiding us through the light wind till we got into the good stuff. 

One Wednesday last week, I met Jen and the kids with my parents at the Seattle Yacht Club back to school party.  They had a balloon artist, who immediately ran out of pink and purple balloons. How in the hell do you run out of pink and purple balloons?  The girls in line were crushed. The yacht club also had a climbing wall. Inflatable climbing wall. 
Mighty Sam climbing the wall of terror!
Benny climbing the wall of kinda of scary. 
I should mention that Ben meet us at the yacht club after climbing Mt Si for one of his friends birthday celebration. 
Felix (birthday boy), Benny and Josiah
At the top!  Pretty cool thing for a birthday party. 

Kids got rabbits this month also. 
Here is a photo of Ben's bunny RexE. 
Very friendly bunny. 


Sam has one also named Stella. 
Not quite as friendly as Rex but getting used to Sam 
Loving Stella to death. Maybe literally. 

I'm out of gas. Can't blog anymore. Too tired. Chemo today is kicking me. I'll be back and kick it though.