And away we go...

I have to apologize for spelling and grammar. I'm typing this during chemo and I feel weird and sleepy.

A little backtracking first.

My surgery went well.  Checked into the hospital at 0530am and met the team, had an IV started, and was wheeled into the surgical suite at 0730. I woke at 4pm or so.  Surgery took 7 hours. Dr Pollock used the Davinci Robot on me which means smaller incisions and faster healing.

The doctor is the one with his head in the big console. He controls the five arms that get jabbed into me.  His view is in 3d and the robot arms have tactile feed back allowing him to "feel" while doing surgery. 

When I woke up in my room, I was doing ok.  Here is a photo of my belly.  I'll spare you a picture of the tube in my penis.

The bag looking object on my right side is my new colostomy bag. The rest are bandages.  My pain wasn't too bad after the surgery but sometimes the cramping was goddamn awful.  Pain pills and the like help but the pain still brought me to my knees a couple times. 

The staff on 10east at Swedish were great and got me up walking around the floor by 8pm or so.  Sooner you start walking, the sooner your bowels start working again.

My diet got advanced fairly quickly as the output on the colostomy bag increased.  The first thing I had was a peanut butter shake.  When calling the dietary department and placing your order, you have to be firm with them.  They will insist that peanut butter shakes do not exist.  My doctor told me to not take no for an answer.  Finally they relented and sent up two shakes. It was delicious. One for me and another one for Pete J.  He stayed with me during my stay. 

My two kids visiting me in the hospital.  This is the day room.  

Thanks to everyone that visited me in the hospital. It really helped with my spirits. 

Pete and I must have logged over 10 miles walking around in the hospital. I credit that for getting me out sooner. Surgery was Friday and I was released Tuesday morning. Should have been Monday but the output on the colostomy was too thin. 

Got back to Ilse and Pete's house Tuesday afternoon and took a 3 hour nap. Sleep was and is hard to come by. I have lower back pain since the surgery and the CT scan that I had last week shows a collection of fluid in my lower back. Pretty normal for my type of surgery.  Supposedly the body will absorb the fluid but it will be awhile.  

Wednesday I think Pete and I went to Shilshole to get some medicine and other objects from Appa. A beautiful day of sunshine. I even had a beer.  Below is my selfie of that day.

During my recovery, I was able to see the kids and hang out with some friends. I made the mistake of having green bell peppers for Cinco de Mayo. That night I thought I was going to die.  So much pain from trying to pass those bastards. Never again.  Not till I get "reconnected" anyway. 

I took the kids out for pizza and they are very curious about my colostomy. I showed them twice how it works. They were a little grossed out but fascinated.  Then we started talking about my eventual chemotherapy. Many questions asked but mostly it was concern that I am going to lose my hair.  Both kids then told me that they want some hair to keep. Sammy then said something that I still just shake my head and laugh about. She said, "I want the more hair then Benny so I want the hair off of daddy's back and butt.  He has the most hair there..."  WTF!!!

Out eating with my kids. 

When they removed my cancerous, traitorous, bastard, A-hole of a rectum, they also removed all the surrounding lymph nodes.  I had to wait 6 days for get the biopsy report on them. We thought that the cancer was only in the rectal area but now I know different. One lymph node was found to be cancerous. This means that I am officially a Stage III cancer patient. It also means that the cancer got out of the initial site and is potentially anywhere in my body.  I had a CT scan to confirm that no cancer has setup house in any organs but there still could be some cancer cells running around looking to settle down in my liver or some place.  That is where the chemo comes in. Scorched earth policy.  Kill everything but the body.

Last Friday before Memorial Day I had a port placed in my right breast so my veins can be saved.  They can do blood draws and infuse poison into me all from the port.  The surgery was quick and easy. I was sore in the right shoulder area but nothing too bad.  

The colostomy bag has been treating me ok.  I am slowly getting use to it.  I am not a fan but could deal with it even if I had it for the rest of my life.  Changing the bag is pretty easy.  You just have to understand that the ostomy (hole in my abdomen that poop comes out of) is always active. I know this and yet got a little careless.  I was at my mom's house and ready to change the bag out. I put a plastic sheet down and got everything prepared.  The bag is held on by adhesive and can be quite stubborn to remove. Once off, you have to clean the skin and put a new bag on. I got the old bag off and turned to get the wash cloth, just then my ostomy decided to pull a Mt Saint Helens.  With precision, the poop flew out of me, cleared the plastic sheet and landed on my shoes and clean clothes. My first thought was "Bravo".  Such is the trials of having an ostomy. Needless to say that I don't keep clean anything near me while changing my bag.

When I got the call about my cancerous lymph node, this little guy was crawling on me.  I needed someone to cry with and he fit the bill.  Pete J was there along with Porterhouse but I only cry in front of bugs.  

Today is Wednesday May 27th and I am almost done with my first chemo treatment.  I get Oxaliplatin on odd weeks and the first week is an odd number. I also get my 5FU.  3 hours in the infusion suite.  Side effects so far?  Tired.  Fingers numb.  That's is about it for now.  Oh.  Sensitivity to hot and cold. Cold water is a bad bad thing. Like swallowing lightning. I come back next week for more.  6 weeks on and then 2 weeks off.  16 total treatments and with the 2 week breaks, it'll take 20 weeks. 

The infusion suite reminds me of work.  IV pumps alarming all the damn time. 

Well, I'm done with day one. Once I got home, I reached into the fridge for some sandwich meat and when I touched the cold meat it felt like it had needles on it. So strange.  I ate some goldfish crackers and that kicked my saliva glands into high gear and they ached. I'll be eating luke warm foods only for awhile I guess. Also drinking room temperature fluids. Hmmm.  What in the hell is ok to drink at room temperature?   What in the hell can I have?   Oh I know...

Thanks to Pete J who stayed with me during my hospital stay and has been my advocate.  My parents came by and gave much love and support.  A ton of friends also dropped by.  Love you guys. Thanks to my wife for bringing the kids down for me to see. I love those little guys so much!!!!!

Thanks to Mary M who drove me for my port placement and to David W who drove me to CT scan and then today, drove me to chemo.  I mean do I have great friends or what.  

Thanks everyone for the phone calls and love.  Prayers also.  They helped and are helping.  

More blogging later and possibly more gruesome after the side effects really kick in!

Time. Where does it go?

 I don't know what to say here. How can you prepare yourself for this?  It almost seems elective in nature. I've know this day was coming since last year. Plenty of time to prepare but I feel like I have a huge life altering exam tomorrow and I didn't study. I was asked if I was ready for this. How in the hell can you get ready? On the surface you can appear ready and I know I have to do this but am I ready? I have no idea. Do I have a choice?
To help prepare for this shit storm of pain and misery that is barreling toward me, I took my son Ben to Legoland. Just him and I. Had enough miles to bump us to first class and got a hotel on the beach in Carlsbad California.

We had a great time. Landed at 9 am in San Diego, got a car, and drove to Legoland. Spent the day getting the lay of the land and around 3pm we headed back to the hotel to check in and get some sleep.
After a bit of a nap, Ben and I walked down to the pool and did some swimming and also got in the hot tub. Once refreshed, we made a plan for some food.
According to Ben, he has never had room service. Not sure if that is accurate or not. I had to explain to him what exactly room service was. His eyes got wide. "You mean we don't have to leave the room? We can watch animal planet and eat? "  He was in heaven.
Wednesday we hit Legoland after a late start, we did the aquarium and the water park. More room service once back at the hotel and spent the night watching Animal Planet and Discovery channel. That was all he wanted. Chicken wings and hanging with me while watching TV. Mission accomplished.

Thursday we packed up and headed to San Diego for our 5pm flight but first we did lunch with my brother Pete. He's the yacht broker. I thought we would just drive to a place but we took out a new 38' Searay with twin gas motors. I want to say combined, they gave the boat around 800 horsepower. Pete again let Ben drive and I assisted. Beautiful weather and we headed for Harbor island area and for Mexican food. Great time.

Flight home was great and Ben slept for most of it. By all accounts, it was a successful bonding experience with my son.
Also my brother flew out with his oldest Kody.  We went for a great sail and just hung out.

My good good friend from Chicago flew in also.  Steve and his kid Justin.  More sailing and just hanging out.

I am off work now till the beginning of June. I hope that my recovery goes smooth and I can actually enjoy a portion of this time off.
Sam had her 5th birthday this past Wednesday.  Jen put on a great party for her.  I was part of the assembly team.  Sam got the Playmobil Grand Mansion.  Three stories of doll house.  She loves it!

Gymnastics the Thursday before my surgery

I start chemo again in 2 weeks. No idea what I'll be on. Have to get through tomorrow and then the nerve wracking wait for the biopsy on my lymph nodes. I am hoping for the oral chemotherapy. Doubtful says Dr Gold. Grrrr.

Almost pulled it off

I had this plan to take Sam to see Cinderella.  We were going to dress up!

Masterplan was this:

1. Buy awesome Prince Charming costume
2. Buy awesome Cinderella costume for Sam (thanks Jen and Grandma!)
3. Have neighbor's daughter, who is friends with Sam, get awesome costume
4. Take photos in the sunshine at dock
5. Go see Cinderella and possibly get in for free because of, well, awesomeness!
6. Grab some Chinese food after free movie.
7. Get check from Chinese place but we owe nothing because of...wait for it...awesomeness once again.
8. Take kids home
9. Get some sleep for work the next day

This is how it went down:

1. 1 through 3 done.
2. Taking Sam off of the boat, slipper gets caught on rail and falls into water.
3. Put Sam down and almost lose keys and cell phone in water trying to grab shoe that while made of rubber, sinks like a damn stone.
4. Ask Sam if tennis shoes are OK.  They are, of course, not OK!!
5. Beg for couple of photos and get a half-hearted OK.
6. Go back to boat and change back into street clothes.
7. Wear crowns to the movie and while awesome, not enough for free movie.
8. Surprised self by how much I enjoyed Cinderella.  I even cried but that could be the cancer.  Yeah, the cancer made me cry.
9. Sam loved the movie and so did Kaley.
10. Went to get Chinese food and had to pay full price.
11. Dropped off kids.
12. Hit the sack.

I guess the real Cinderella lost her slipper but that was AFTER the ball.  All is well though.  Neighbors retrieved the slipper while we were at the movie.  I had to reassure Sam over and over that we could get her slipper back.
Sam wants to see the movie again and I do also actually.  Going to take my mother and we are going to try the dress up thing again.  NEVER QUIT!!!

This does NOT float!!

If she wore mascara, you would be able to see the streaks from the tears...

Ctrl Alt Delete...reset

Drag your thoughts away from your troubles... by the ears, by the heels, or any other way you can manage it. ~Mark Twain

Spent last weekend in San Diego seeing family and friends.  Stayed in Mission Bay area almost on the beach.  Went running most every morning on the beach with my mom and then tooled around the SD area taking it all in.
My step-brother along with his wife and daughter took us out on an Azimuth 54.

$2,500,000!!

I was driving the boat home from Coronado and was told to let the dogs off the chain.  I pushed the throttles to the stops and the twin Volvo turbo-diesels, churning out 750 HP each, hustled us quickly to almost 50mph.  See those cushions on the bow?  They flew up and over the flybridge.  Had to circle around and get those things.

I did High Mass with my good friend Michael who had his son with him.  My mother also attended.  It was all in Latin and a very beautiful ceremony.  Lots and lots of sitting , standing, and kneeling.  I am glad I went.  We left church and hit the road to take out that 54 footer.

The weather our entire stay was hot and sunny.  The boat ride was fantastic and I can't thank my brother enough for the good time. He let me drive the boat all day.  We cruised around the old carrier Midway and took the boat into nooks and crannies in the SD Bay area and then over to Coronado Island and had dinner.

Once at Coronado, we met up with Eric and Charlotte and their two kids Lyra and Cora.  Cora is the one that brightened my mood during my last blog writing attempt with that great picture.

Lyra and Cora

Trying to do a selfie+1

Eric and Charlotte

Here is Pete J. along with Pete, son of  Pete, Charlotte , Cora and myself and I think I see Pete's daughter off to the right, Calena (sorry if I spelled that wrong) 

On our day of departure, we met up with Lee and her husband John.  Lee and John helped us last year with Appa while we were in Newport Beach getting ready to do the trip down to Mexico.  They are the BEST!!

Ilse and Lee

Thanks to Pete J. for driving down and hanging with us and also Lee and John for doing the same.  Props to my brother Pete who let me drive that boat.  Good times!!

Sunset photo from the Mission Bay Beach.  Saturday night I think.

I didn't take many pics.  My mom has some more and I'll try to get them.

Here are some recent ones from Seattle.  Just random stuff...

Sam in gymnastics class

Completed her first round of gym class

Ben and Easton completed their class also.  Medals for EVERYONE!!!

My little girl!

This Tuesday I am taking Sam to see Cinderella.  We are going to dress up.  I'm going as Prince Charming and she is going as...Cinderella as pictured above.  Actually that is a Jasmine outfit but Sam doesn't like blue dresses.  Then we are going for Chinese.  At her request!  Damn she is growing up fast.

Ben and I are going to San Diego on April 7th through the 9th to visit Legoland.  Just him and I.  Cashed in some miles and we are going First Class. We rented a car and then we'll hit the park.  Got a place on the beach also.

Trying to get some time in with these kids.  I work every other weekend and it seems like I never see them.  I will be working right up to my surgical date I think.  Or at least try to.  I'm still struggling with the time off, no vacation time or enough sick time, and the fact that I don't qualify for the Family Medical Leave Act.  Pretty sure it will work out but I don't know.

Surgery on April 24th and then 6 weeks of recovery.  Then chemo.  That's how it stands.  I am doing fairly well.  Not thrilled with the upcoming bullshit but I have to do it so stay the course.

 

I have a date...

I make no apologies for this post.  <edit> It is hard for me to write these posts.  When I first started this post, I was full of anger.  Then, a couple hours later while I was still writing this post, I got an email.  That email diffused me.  Every day is like this.  Anger and then something wonderful will happen.  Sustaining rage is, I find, a very hard thing to do. So I'll let this post stand.  Swear words and all. 

April 24th I go in for surgery.  0530 in the morning.  I am the first and only case the Dr Pollock will do that day.  Five to six hours of surgery.  I will wake up (hopefully) with an ileostomy and a foley catheter along with a nice big surgical incision.  Don't know what those are?  Click on the words at your own risk.

This is the part that makes me so god damn angry about this.  I feel fine right now.  Aches and pains along with some bowel issues but I am getting better every day.  I feel almost normal at times.  By April 24th, if I keep getting healthier, I will feel absolutely normal.  Then I go and get all screwed up by the surgery.  Six weeks of recovery.  SIX WEEKS!!  Then I get six months of having the ileostomy and undergoing chemo at the same time.  Oh I know, I will feel better eventually.  The doctors are saying 18 months after my surgery I will be at my new normal.  My new normal.  I fucking hate this cancer.  FUCKING HATE IT!!!!

I would be lying if I was to say that I have not entertained the thought of not doing the surgery.  Some people do that.  Get the chemo and radiation and then skip surgery.  Some people also have the cancer come back.  And when it does come back, it is like the Six Million Dollar Man.  Better, stronger, faster...

I am exhausted by this.  Drained from worrying, drained from trying to put on a brave face, drained from keeping the fear at bay.  As the date gets closer, I wonder how I can keep this up.

I really thought that after I got the surgery date I would feel better.  Being on the path the wellness and all that happy crappy.  Nope.  I am full of anger and fear.  More anger than anything else.  This is the kicker though.  When I saw Dr Pollock for the initial consult, I got some good news.  I had to do yet another rectal exam  first with the finger (my surgeon is a large man with big fingers...) and then a sigmoidscope.  They injected air into my bowel so he could see.  It hurts.  They have a metal bar you hang onto while they do this.  They offer you a stick to bit on.  I am not kidding.  Anyway, he couldn't see the tumor.  It is gone.  There is an area that looks like an ulcer and it is healing.  So I had good response to the radiation and the chemo.  This was just a quick exam.  I have the really test to see how well I responded to the treatment in 4 weeks or so. Good news right?  I should be jumping for joy right?  Not really.  I am haunted by this specter of surgery.  I cannot shake it.  And it is only getting closer.

In the end though, this is how am I getting by in my day to day.   Love from friends and family.

As I was writing this blog full of anger and hate, I got this email from my good friend Eric.  His wonderful daughter drew this.  And I feel better.

This is me.  I look good.  Healthy and the sun is out.  Grass looks cut and the flowers are HUGE!  Just the way I like them.  Thanks to Cora for drawing this for me.  I LOVE it!

I hang out with these two creatures and I feel better.

Had dinner with Jugurtha, Samira and the little critter standing on the table.  And that made me feel better.

I got a hug from a friend I haven't seen in awhile and I feel better.

I couldn't do this without my family and friends.  And I suppose that is how I will get through this.  Drag all of you through this with me.  For that, I love ya!