Back in the saddle...

Truer words have never been printed...thanks for the shirt Chris!

It has been two weeks since my last chemo treatment. A bit more actually. However, today I am back at it. Also I am getting the "bad" chemo. Once again I can't have cold drinks and reaching into the fridge or freezer is an adventure.  Well, as long as this works, I can deal with it.  At least they didn't miss accessing my port today.

On the 3rd of July I took Appa over to Liberty Bay for the annual fireworks there. My good friend Chris went with and we rafted up to David and Julie. Great time. On the 4th, Chris and I headed back to Shileshole marina and David headed down to Quartermaster Harbor for their 4th of July firework celebration. Once at the dock, I started to get the boat ready for our trip to the San Juan Islands. My mom and dad showed up around 6pm and Jen dropped the kids off around that time also. On the 5th, at 7 am, we shoved off the dock and caught the ebbing tide to Roche Harbor. Had a great transit to about Port Townsend and then hoisted the sails and took off across the Strait of Juan de Fuca. One of the best and fastest trips north ever.  Arrived at the Seattle Yacht Club Henry Island outstation around 5 pm. We were travelling with two other boats, Sand Dollar and Dolphin Quest. They pulled in around 8 or 9 as they left a bit later than us. 

7 am comes early sometimes. No wind till we reached the Strait. There was a ton of haze from multiple fires on Vancouver Island. 

A bit of a nap while motoring. 

Making breakfast underway. 

Here is my Benny. Reading his book for a change. That boy loves his screentime but then again I do also. 

My bio dad has been dead now for years. This is my step-father Pete. I was taking a nap on deck while in Friday Harbor and woke to Sam and Opa playing Uno.  Ilse was also napping.  Sam then changed the game to a hybrid version of Uno.  This went on for a bit and then they started to play hide and seek. While on the boat!  So cute. Then Sam conned Pete into watching a Barbie movie with her. Once the movie was over, Pete came back on deck and said "I should get a free pass to heaven for watching that Barbie movie!". 

This is hard to put into words but I am happy that Sam has a chance to know Pete. She calls him Opa and they really connected during this trip.  I find it unfair though that my daughter and son (Ben met Arne in Florida and does kinda remember him) will never know Arne. I never knew my grandfathers. I have a vague recollection of my mother's dad but never knew my dad's dad.  By all accounts he was a great man. Died of stomach cancer before I was born.  Had I known Butch, would I have turned out differently?  I wonder what my cousins Eric and Heidi think about not having Butch around. Jen's brother's kids go with their grandparents to Wisconsin for a month and live on a farm. What an experience that has to be.  Maybe I'm wistful about the whole grandparents thing cause I feel cheated and I think my kids are being cheated also.  Hell, Eric and Heidi were cheated too.  Jen's dad has dementia and the kids won't know him.   Thankfully Jen's mom is doing well and is a part of their lives.   I did live with my grandmother on my dad's side but my mom's mom died before I could know her.  She died of, wait for it...cancer. 

Here is Sam and Oma at the Henry Island outstation. Sam and my mother really bonded during this trip.  

We spent the night at Henry Island and then in the morning headed over to Bedwell Harbor which is in Canada on South Pender Island. Bedwell has a nice hike to the top of Mt. Norman and also a nice swimming pool and hot tub. 

We took  Easton from Sand Dollar with us to Bedwell. 

My little buddy Easton!

Upon landing at Bedwell you have to check into Canada. The captain of the vessel is the only one allowed to get off the boat.  We got the boat secured and I headed up the dock to the border patrol office.  It is much easier to check into Canada then to check back into the USA.   Once in the office the border patrol officer noticed a bulge under my shirt and after introducing himself he inquired about it.  It does look like a holster I suppose. I lifted my shirt and said one word, "cancer". Things went smoothly after that. 

We spent two days at Bedwell. Love that place. 

The crew of Appa, Sand Dollar and Dolphin Quest just before our 6 mile hike to the top of Mt. Norman. 

The boys hiked on anything and everything. 

The hike could be a metaphor for my cancer. Really tough trail at times. 

At the top. 

My kids did great on the hike. Ben never complained and Sam did once in awhile. We told stories while hiking to keep her mind off the trail. My uncle Lynn used to tell me Bowser the dog stories. I changed that a bit to Bowser the Mahi Mahi. This Bowser is a fish that tries to help other fish in the ocean. It is a work in progress. 

On the way down, four of us got stung by wasps. I got it once on the calf.  Shauna got stung and so did Dylan from Dolphin Quest. Poor, poor Sam got hit 5 times. Five freaking times. Oh the screaming and crying. We had two more miles to go at that point. I cannot carry Sam. She worked her way down and once at the trail head, we jumped into the dinghy and roared to Appa. Some Tylenol and Motrin given and Sam started to feel better. What a girl!  

Papa Fox aka Pat met us in Bedwell on his boat Subira which is an Islander 36 Freeport. He has been working nonstop on his boat and got enough done on her to actually use the boat rather than work on it. He stayed with us for the entire trip.

The next day we headed to Ganges which is a nice little town with a proper grocery store. Seattle Yacht Club has an outstation there also and once docked we headed up to Moby's and had lunch. We sailed almost the whole way. Sand Dollar and Dolphin Quest went to Portland Island instead of following us.  They would then head to Buchart Gardens and other places.  We would meet up again back in the USA at Stuart Island in Reid Harbor on the 14th. 

After Ganges we motored over to North Pender Island at a really cool place called Otter Bay. They have two swimming pools and a nice little cafe and grocery store. Small grocery store. Pat followed us over and we had a delicious dinner of brats and potatoe salad. 

Appa in Otter Bay. 

I spy with my little eyes ORCAS!  They were not very close though. 

I had to have Ben back in Friday Harbor on Sunday the 12th. He had computer camp on the 13th back in Seattle. Jen drove to Anacortes and then took the ferry to Friday Harbor. She also brought along an inflatable kayak that she purchased for me.  It is an Innova Swing II.  Two person model.  Super light and cool.  

Saturday we headed back to Roche Harbor and checked back into the US.  Pretty painless as far as checking back into your own country can go.  Had really nice officers there this time.  I have had some real ball busters over the years.  We  headed back to Henry Island and spent the night at the outstation again.  Pat got a slip in the Roche marina. Once we were all set on Henry, I took my dinghy over to the marina and had a couple drinks with Pat at the bar.  

Sunday there was no wind so we motored to Friday Harbor and met Jen at a restaurant and everyone got reacquainted. I was wondering if Sam would pitch such a fit about being left with me for another week and not seeing her mama but in the end, she did great.  We sure missed Benny though.  

Friday Harbor also has a Seattle Yacht Club outstation and we stayed there while Pat got a slip in the marina. 

Motoring to Roche Harbor 

Sam was not immune to the drone of the motor on the way to Roche. 

Friday Harbor outstation 

Once awake it was chocolate time!

Sunday was a tough day for me. Had to say goodbye to my son for a week.  He was anxious to go and was looking forward to computer camp.  Ben is a bit of a home body.  He likes a set routine and the ability to see his friends at any time. Vacations for him are more of an ordeal. 

Sam settled down after Jen left and we had a good time. 

Swinging and kissing. 

Heading to Deer Harbor. Even the kitty has sunglasses!

Monday morning was light winds and we decided to take the long way around Shaw Island and head to Deer Harbor. We sailed the entire way.  Battling current and light winds was challenging but a ton of fun. Pat passed us briefly while we headed down the San Juan channel. That guy got lucky with current and wind for sure.  Once he passed us, I got serious and really started to sail Appa.  We did attempt to fish however.  Took us 6 hours to go 8 miles. It was fun as hell. I guess you had to be there.

Sam clearing the fishing line yet again while sailing to Deer Harbor. Look at the water.  No wind at times and yet we sailed. 

Almost at Deer Harbor. 

Deer Harbor was a great place. Nice dock crew and a great hike to a very cool restaurant. We even saw deer. 

Tuesday we planned on sailing to Stuart Island and hooking back up with Sand Dollar and Dolphin Quest. We tried to sail but the current was just to strong. Once in the harbor, we dropped anchor and had Pat pull in and raft off of us.  I haven't anchored for over a year and we were a bit rusty at it but got the hook down.  Sand Dollar was hanging off a mooring buoy when we arrived and after one night came over and rafted off of us. 

Sand Dollar, Appa and Subira.

My mom has friends that live at a house on Reid Harbor on Stuart Island during the summer. We  visited with them and had freshly caught shrimp. Thank you Howard and Sands for sharing your shrimp and your beautiful house. 

We hiked to Turn Point on Stuart Island.  It is a nice easy hike but long. Once again we dragged Sam along and told stories the whole way to make it easier on her and us.  No wasps this time. 7 miles round trip.  

Thursday we left for Deer Harbor again.  Sand Dollar and Dolphin Quest went to Jones Island and we felt that Deer Harbor and their swimming pool needed another visit.  Pat took Easton with him to help him sail his boat.  By all reports Easton was great crew.  Sam and Easton swam for almost 2 and a half hours in the pool. In President's Channel we saw a gray whale being chased by the stinking whale watching boats. Poor creature. 

Friday we hit Friday Harbor again. There we  had celebratory drinks on Sand Dollar toasting to our trip being almost done. 

Friday Harbor sunset 

Saturday we all left for Port Townsend.  Pat and I had reservations at the marina there but alas, no room for Sand Dollar and Dolphin Quest. They pushed on through and headed back to Seattle.  We spent a great day in Port Townsend.  It was hotter than hell there.  High 90s was reported.  

Sunday we pushed on home to Seattle.  Had to motor the whole way but that was alright. 

It was a great trip and I enjoyed the two week break from chemo.  

Playing while motoring to Seattle. 

Hanging out on a seal. 

I really need to take more photos of Benny...

She had a nightmare at Port Townsend and crawled into bed with me. So warm and cuddly. 

Wearing Opa's hat. 

SItting here in the infusion suite getting this poison pumped into me; I can already feel the weirdness creeping back into my body.  My white blood cell count is low now.  The infection fighting cells are ok for now though. I might have to get some medicine infected into me to stimulate WBC production. I was told to not worry about it till the doctor was worried about it. So I'll try to not think about it.  

After today five more weeks and then I get another two weeks off.  After those two weeks I have four more infusions left.  Then a CT scan to make sure the cancer is gone.  After that they test my colon and rectal area to make sure I don't have any leaks.  If that is good I get to have surgery to reconnect everything.  One day at a time. 

I am reading Lonesome Dove again. Been years since I read it. I enjoy this quote and think about it often.

“I see you’re in a hurry to get someplace. It’s a great mistake to hurry.” “Why?” Joe asked, puzzled by almost everything the traveler said. “Because the grave’s our destination,” Mr. Sedgwick said. “Those who hurry usually get to it quicker than those who take their time.”
― Larry McMurtry, Lonesome Dove

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!