Just rolling along

Week six. I have fourteen more treatments left. Today, June 30th, is my last treatment for two weeks. I get the two weeks off to let my body heal from the poison. On the odd weeks I get oxaclepatin and that is some evil stuff. I have some residual numbness in my fingers from the course I did last week. This week is the 5FU only. Easy peasy. 

This is what Johnny Cash and I think of cancer!

Yesterday I went to see the surgeon and have scar tissue removed from the area they removed the tumor. Yes.  Down there. Knees tucked to chest and deep breathe is the only advice I can give. They do not knock you out for this. It was...the hardest thing I have done I think. They use a dilator so they can fit tools in the rectal area to remove the tissue. If this is hard to read about, it is worse in person.  Took 10 minutes or so. They have a bar to hold onto and a pillow to bite. The pain was unbelievable. Oh, they also inject air to see better. Alright enough of that.  

The surgeon says I look great down there and in September they will test the connection he made with contrast dye and see if it leaks. No leak and then I am set for reconnection end of October that is if I can stay on schedule with the chemotherapy. 

The oxaclepatin has culminative side effects. Every time I get it, the side effects are more intense. Hot and cold give me pain and shock type feeling to hands and feet. I'm tired quite a bit. Cold drinks give me spasms of the esophagus. I think I covered this so, let us move along. 

I am not working yet and won't till end of July at least. We are taking the boat up to the San Juan islands on the 5th of July for two weeks since I don't have chemo.  So during my downtime I have been trying to get Appa ready to go.  She needed a new depth sounder as the old one died.  This meant hauling the boat out and having her in the slings while we changed the transducer out. Then the next morning, we splashed her. No leaks and I can now tell how deep it is.   Good thing to know when your boat takes 8 feet of water to float in and rocks abound in the San Juans. 

Getting hauled out. They have a scale in the haul out rig. Appa weighs 28,000 pounds. Weighing myself for chemo today, 177 pounds. I started this ordeal out at 200.  Which was way to much. 

My buddy Chris helping with the thru-hull. David is in the boat helping. 

Where the transducer goes. The hull is about an inch thick here. 

So as crappy as I feels sometimes, I just push through and work on the boat or hang with the kids. Sam is in soccer on Saturdays and this week is doing horseback riding camp.  Ben has JavaScript programming class this month also at the University of Washington. Neither kid is interested in sailing camp this year.  

Sam hanging in the bosun's chair. She swings around up there happy as all hell. Ben also. He taught her. 

Oma and Opa with the kids on Appa. 

Saw Willie Nelson Saturday!  Thanks Chris and David. Allison Krause opened for him.  Great concert. 

I had a hot dog and a couple beers at the concert. I have strange cravings. Hot dogs one day, hamburgers the next. Tuna salad. Or chicken salad. 

In my oncologist appointment today we started talking cars.  In my downtime, I've started watching Top Gear which is a BBC program about cars.  It is one of the most popular programs in the world.  Anyway, Dr. Gold drives an Audi s8. He wants an R8.  That is the type of car that Iron Man has in the movies. He showed me a video of him test driving one. Cool car.  Anyway, I'm not an Audi fan.  I told him about my brother working for Ford and the discount etc.  He ordered me to go buy a new Ford Mustang GT.  Ordered me.  I was going to get one as a consolation prize for getting and dealing with this cancer once all my procedures are done.  He told me not to wait that long.  He is expecting me to have a Mustang with proof of pictures when I come back for my next treatment.  What to do?  I mean it is doctors orders...

Not quite this wild I should think. 

All in all, I'm ok. Got crap days and good ones.  Good seem to be outnumbering the bad and I'll take that any day of the week.  How many people on chemo can go out with friends to an outdoor concert and have a couple beers?  Maybe all of them, but I don't think so. 

I had an epiphany a couple weeks ago. Standing the shower I was reflecting on my increasing short temper and impatience with everyone from my kids to my life.  Back before surgery, I was trying to stave off the impending hard times that were coming.  I lived every day slowly.  I took my time with everything. I had patience (Ok.  More patience than normal).  After the surgery I did the same thing, take things slow.  I have cancer, I get a break now. Slow the hell down.  Make the days last.  Now though.  Now I'm in the chemo part of my therapy.  And I want it DONE!!  NOW!  If I could throw a switch, I would leap forward to October and be done with this damn awful chemotherapy.  My skin doesn't feel right, I ache where I never have before, I shake quite a bit from the Oxaclepatin.  Texting is an adventure at times.  This underlying thought of speeding past months of MY life just so I can feel better is paramount in my life right now. It is also not a good thing. 

I am trying to slow down and enjoy this ride.  As awful as it is, I should still embrace the good with the bad.  I fail miserably at times but I also have moments of tranquility.  Having NEVER been patient, I find this is a hard thing to do but I imagine on my death bed, I would give anything to have back all the moments that I wasted with my worrying and foul mood. 

I think a new Mustang would help. 

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...