Monday, April 22, 2019

Recovery mode

Well, here it is.  April 20th (420 to some) and I am recovering from some major surgery.  April 3rd I went into Swedish First Hill and had them open me up to see what was what.  Prior to that though, I had many, many doctor appointments.  So many.  I have two urologists now (Dr. Chapman and Dr. Han), a transplant doctor (Dr. Precht), an oncology surgeon (Dr. Ong) and of course, Dr. Gold who is my oncologist.  I'll leave out my two oncology radiologists although they are great people.
The ureter on my left side was being constricted by a mass that looked like cancer on the PET scan and the CT scan.  It also looked like I would have to have a colostomy bag (again...) but this time permanently due to the mass looking like it was connected to my large intestine.  That was some heartbreaking shit right there.  Did all that recovery for the reversal of my last colostomy and it looked like it was going to be for naught.  I was pretty upset about that.
So the plan was to have Dr. Ong do a mid-line incision (vertical) that would almost look like a c-section.  He would then poke around and see what needed to be done about the large intestine bit of it all.  Dr. Chapman would be right next to him and would take over for the kidney part of it.  Either removal of the kidney or resection of the ureter.  Dr. Precht would step in if I had to have my kidney transplanted down near my bladder.  That is called auto-transplant.  This would occur if they had to snip out the part of the ureter that was being constricted (and damaged by that constriction) and the remaining length wasn't long enough to reattach to itself.  You want two kidneys for chemotherapy.
April 3rd finally rolled around.  I spent the two prior days absolutely miserable doing bowel prep.  Some of you have had colonoscopies.  You know the drill.  Imagine that for two days...the vomiting started on the second day.  I think my electrolytes were thrown off.  Lord, I was miserable.
Got up at 0430 and took the pre-surgical shower.  Basically bathing in anti-bacterial soap for 10 minutes.  Arrived at the hospital and started the check-in procedure.  IV started and then Dr. Ong walks in with a marker in his hand.  "We are going to draw on your belly where your new colostomy is going to go.  Where is your belt-line?  We don't want this too low..."  That is when it got real. You think about the surgery and life after.  You dread it.  You get anxious about it.  Then you just want it to happen.  I met all the doctors at my bedside.  We all talked about what we were going to do that morning.  "Exploratory laparotomy with new colostomy and possible kidney removal or auto-transplant" I repeated back to them.  How in the hell did I get here...
Pre-op.  Getting ready to go in.
They wheeled me into the surgery suite with a bunch of RNs standing around.  I was going to get a foley catheter (tube into my penis and then the bladder) and I was also getting a nasogastric (NG) tube placed into my nose down to my stomach (left nostril please) that would then decompress my stomach.  These two tubes were going to stay in for a couple of days.  I have, over the course of being an RN for a couple of decades, placed hundreds of foleys and NG tubes.  Maybe thousands.  Having them placed in you is another whole different animal.  You get used to it but I didn't like it.
Showtime!  They give me some medicine and I remember asking Dr. Ong to please make my surgical incision to look like a shark bite.  Much cooler to take the shirt off at a pool and say "Yeah.  That's right...shark attack!"  And I was out.
Ah.  The good old NG tube in the nose trick.  I'll spare you the foley catheter picture!
Woke up in recovery and other than the aforementioned tubes in me, nothing felt different.  No colostomy bag.  No lump in my groin where my kidney maybe now resided.  First thought...I was so full of cancer that they opened me up and then closed me.  You hear about those cases.  The recovery RN must have seen my face because she said "Wait!  The doctor is going to talk to you.  It is not bad news."I get wheeled into my room on the 11th floor and start to piece together what exactly happened.  My surgeon said that they opened me up and I was full of lesions that looked like cancer.  They were devastated.  They called my oncologist and told them what they found.  "Get some biopsies for genetic reasons and close him up.  Chemo will start as soon as he gets strong."  The genetic testing would be for Sam.  She can get tested to see if she carries a gene for this cancer. 
I was basically screwed.  Except the biopsy came back negative.  Another call to Dr. Gold.  "Do more biopsies..."  Twenty total biopsies.  No cancer.  From devastated to elated.  The thing that was trapping my ureter?  Not cancerous.  Not only that, they were able to get the ureter out of the mass and when it popped out of the constriction, it immediately plumped up and started to get blood flow.  No need for a resection or a transplant!!
Dr. Gold came into my room and called me his miracle patient!
All tubes pulled!!
Still swollen belly.  That incision goes down another three inches...
I spent five days in the hospital recovering and finally got to go home.  I am still recovering but doing better.  Have good days and bad ones.  Mostly good ones.  I see the surgeon Tuesday and go from there.
Renal stent gets pulled in the next 4 weeks or so.  I also go back to my normal 6 month CT scan schedule and do watchful waiting. 
Not sure if I live a charmed life but it isn't dull...

Tuesday, February 12, 2019

I thought I was done with this...

Well...I thought I was kinda done blogging and such. I might be still. I have to see how much energy I have. Lemme back up a bit.
Yesterday, the 11th of February, I had my routine CT of my abdomen and pelvis. Cancer screening. Did the scan and the blood work early and then had one hour till the doctor came and got from the waiting room, telling it is all clear. I decided to go to my office in the next building over and change out of my scrubs. Got back to the waiting room and found out they were looking for me. Forty minutes early and they were looking for me...that is not good. Got into the exam room and couldn't even take off my coat before Dr Gold came in.
When you doctor holds your hand or grabs your shoulder or ,God forbid, hugs you...that also, is not good. Dr Gold did all three. Seems I have a new growth that is choking the tube that drains my left kidney. This growth is down in my pelvic area near the bladder right about where we took out my old tumor. Seems we didn't get it all. Also seems like the scorched earth policy I allowed to ravage my body in the form of chemotherapy didn't really help either.
Had a PET scan today. They only give you these, if you have cancer, when they want to find other growths that aren't yet wrecking havoc on your body.  Results tomorrow. Regardless of the result of the PET scan, I have an appointment Thursday morning early to have a silicone tube placed in the tube (ureter) that connects to my kidney. This will help drain urine from the kidney to the bladder because right now, my kidney is swollen and can't drain well.  They go in through the penis and place it. Cytoscopic stent placement.  Metal hollow tubes placed in me to place a flexible tube that stays. I will be knocked out for this.
Dr Gold says I will probably lose the left kidney because the cancer is wrapped tightly around the ureter and it is usually impossible to separate them. I might not but he didn't sound optimistic. I will also have more radiation and chemotherapy.
So same drill.  Big surgery, big radiation, big chemo.  Except my survival rate is now in the 20% range. That's doesn't mean I won't fight though.
Let's see what tomorrow brings...

Sunday, October 1, 2017

Here is the latest Appa video. We took the boat up to Desolation Sound up in British Columbia Canada. You can see how hazy it was during the beginning of the video. This was from the forest fires that have ravaged our area this summer. Once we had a spot of rain, it cleared the skies up and you could finally see the mountains.
I shot the video with my DJI Mavic Drone, old ass HTC phone camera, GoPro 4 Silver and a Panasonic camcorder.  Edited everything in Cyberlink Director studio.
Opening photo is courtesy of Lee Youngblood. 

Monday, September 18, 2017

BiState Regatta Labor Day weekend

This is the 2017 Bi-State regatta.  Chicago to St. Joseph Michigan and back.  Fifty miles as the bird flies each way.  Held over Labor Day weekend and my brother's birthday.  Arne and Gordon have done this race many times.  Now that they are both gone, my brother and I use this race as a memorial of sorts to our dad and uncle.  God we miss you two!

While racing back from St. Joe, we had some hitchhikers.  Two little birds landed on board and proceeded to get into everything.  One landed on my beer-can, went in the cabin, ate a spider, and in general was hanging out, I named him Arne after my dad.  The other was on Kristopher, the steering wheel, the spinnaker sheets, the jib sheets, everything.  That is Gordon.  Funny little birds.

We came in last for the race to St. Joe.  I'd like to think that we did so poorly because of the rigging slowly loosening itself as we raced.  The port side turnbuckle had two more spins and it would have come out resulting in a lost of the mast possibly.  We caught this once in St. Joe.  The Bi-State is a night race there on a Friday and a day race back on Sunday.  It was so dark and windy that we didn't notice anything amiss other than it getting increasing harder to make the boat sail close to the wind.  Dummy me should have checked the shroud tension when that started to happen.  Stupid.

But basically, I think my tactics might have been suspect.  The other boats went close to the Michigan shore and then tacked north.  The wind was right out of the direction that we wanted to go, meaning we had to tack back and forth to get to St. Joe.  In retrospect, we should have gone into the shore more and then tacked.  This would have alleviated some of the waves that were causing the boat to almost come to a dead stop at times.  That tactic of banging the shore and tacking goes against J24 racing where you never hit the corners of a race course.  The difference between long distance racing and buoy racing I guess.  I am more of a driver than a tactician but we had fun.  Next time...

The race back to Chicago, I shut my mouth and just had fun.  We tacked right at the right time and the wind started to back to the SE from the E.  The wind backed a bit more and we were able to hoist the chute.  We also put the finish line coordinates in Garmin correctly.  Some boats had the old coordinates in and they paid dearly for that.  We took a bullet (meaning first place) for the race home.  Kristopher and Peter did the driving.  I was kinda sulking about my poor performance on Friday night.  I am good at sulking.

Here is a link that mentions Kristopher and us.  Also mentions my old J24 boat Tremendous Slouch. We are down near the bottom.

The songs used in the video are Eric Clapton Sweet Home Chicago (YouTube didn't allow the Blues Brothers version), Van Morrison Into the Mystic, John Hiatt Gone, and Nickel Creek Ode to a Butterfly.

Hope you enjoy the video.  I am still learning how to photograph interesting stuff and trying to find my way.  I think finding the right music is almost as hard.

On the cancer front, I had my 6 month checkup and am clear.  The spot on the right lung has shrunk considerably after radiation and that means it was cancerous.  We will check it again in 4 months to make sure.  So far so good.

Friday, May 5, 2017

Next week is my CT scan and then the following day is with Dr Pollock the colo-rectal surgeon.  Pretty nervous about this I must admit.  I haven't slept well for about a week and my jaw hurts from clenching it all the time.  Teeth ache as well.  Hopefully it will be all good and I can wait for the next 6 months and do it all over again.
Going sailing to Poulsbo tomorrow.  Parents, kids and friends.  Cooking mahi-mahi on the boat and doing a bit of tequila/margarita tasting.
Here is the link to the BVI video I made about our trip in February.

It is a bit long and I decided against doing small short vids.  But the kids enjoy watching it and that is all that matters to me.  
I'll post more later.

Wednesday, February 8, 2017

Blog or Vlog?

Snow in Seattle.  What a winter.  This is my buddy's boat after our most recent snow"storm".  Schools closed and then next day, even though all the streets were clear, we had a two hour delay for all schools.
I have all but given up on blogs.  I used to follow almost thirty blogs and now that number is down to two.  I watch vlogs almost exclusively and I imagine that the viewership of this blog has dropped off dramatically especially as I hardly post anything here anymore.  I never did this blog for the viewers though, it was and is my personal record of my life that is whizzing by.  Will my kids read it?  Maybe.  I doubt it though.  But at least I won't saddle them with a ton of photo albums and stacks of papers that they will have to dispose of when I die.  And people say I'm self-centered...
Tomorrow (Feb 9th) we go to the British Virgin Islands for a bit more than a week.  At 2200 tomorrow we will be wheels up to JFK and then to St. Thomas.  The flight to JFK is overnight and then, hopefully, with the kids in a sleep-deprived stupor, we can catch the flight to STT.  Catching this  flight depends almost exclusively on the snowstorm (not the kids) that is barreling towards NYC as I type this.
Airports.  I love them.  When I am at work and talk travel, I get the usual backlash about wait times and all that stuff.  I am old enough to remember when you could RUN through airports to catch your flight!  No security lines.  Nothing.  Get out of your car and run to the gate.  It really wasn't that long ago.  Thinking of travel as a privilege helps.  Pay your fare ( it is cheap as hell compared to what it was), be nice to the stewardess or steward and sit in a chair that eventually reaches 36.000 feet into the sky and wait till you land.  I mean it is damn near magical!  You are sitting in a chair, in the sky!!! 
Not that I ever showed up prepared.  Winged flight and I have had a rocky relationship.  It wan't that long ago that I had almost a 50/50 chance of making my destination back in my wild and woolly days.  Berlin?  Passport with no wallet.  Galapagos...well, I only talk about that when I'm face-to-face.  Generally though I was better at international flights than domestic.  Las Vegas was particularly hard for me to fly into and then out of.  No idea why.
Had my three month checkup last week.  Just me.  I think I swore that I would never do another checkup without someone there with me but things change.  It is a weird place that I am in right now.  Family here, friends here but yet...well, everything is fine so far as cancer goes.  So far.  Gold says CT scan in three months and we will see about that "spot on your liver and lung."  Both of which have grown in between scans.  Nothing to be done about that though.
So I will post a youtube link to the videos that the kids and I make during our trip here.  I think I might make three or four small videos about 4 minutes each rather than one large one.  My son Ben seems to want to do some video taping and I'll encourage that.  He asks me about me editing software and I'll include him on that as well.  Not sure if we will do voiceover, "live" voice or just music with subtitles.  We will see.  What the kids want and what they help with are two different things.
Here is our video channel