Open Pipes and a Smile

I had the best time today.  Cruisin' Gulf Shores in my '51 Chevy with the side pipes wide open.  It's fast and it's loud.  How can you not love it?

And the best part.  Six people stopped me to tell me how much they liked my car and the way it sounded in the hour I was out and about.  If I had driven all day. . . well, my heart couldn't have taken that much love.

Makes the small boy in me grin from ear to ear.

Opinion Trifecta

Today he went to see his oncologist.

The CT Scan results were as good as could be expected.  Still 3 nodules and their size and shape had not changed.  Re-scan in November.

He talked to the oncologist about the six reasons he had been given for not having surgery.  The oncologist listened intently and agreed with each point.

When asked about joining a study to attack the NETs more agressively, the  oncologist replied, "Right now you feel pretty good.  I can guarantee you that if you join a study you won't be feeling good.  Let's just continue to watch them for now."

And there you have it.  Living with C.

A Second Opinion

Today he went to see the surgeon who had cared for him during his 2011 recovery.  He wanted to lay out what his daughter, the doctor, had told him about not having surgery and seek his opinion.   The surgeon confirmed what she had told him about having surgery.  He did not disagree with any of her six reasons to not have future surgery.   The surgeon suggested that he ask the oncologist if there were any new protocols at MD Anderson studying NETs and to get with them if he wanted to fight the NETs more aggressively.   The surgeon thought there might be a chance to do an ablation from the back without perforating the bowel.  But, he did not disagree with ‘don’t perforate the bowel’.   When he got back from the surgeon’s office he sat down and didn’t do anything the rest of the day.

Live With It

The decision to "live" with cancer sucked. 

There was a scene in The Vikings episode he watched today where a character did the "it's a good day to die" deal and then volunteered to be a human sacrifice. 

He struggled with how could possibly accept his fate cheerfully. He didn't know how only that he had to somehow.  Enoch and Elijah were the only two men who didn't die.  We all die.  The test is to die well.  He prayed that God will give him the strength. He didn't have it of himself. 

And if he was worried about his wife, the best gift he could give was to be the best husband any woman ever had for the "x" amount of time he had left.  

 

And who should he tell and when.  Surely not before he saw the oncologist again.  Maybe it would be best if he didn't say anything.  He didn't want people getting weird about it.  Maybe he'd wait to say something until there was a bigger problem than just waiting to see what happens with the tumors.  

Or should he tell anyone beyond his family and closest friends?  If he tells someone not in the inner circle, they'll say I'm sorry then they're stuck in an awkward situation.  So he or they say something about everyone dies and no one knows when they will.  But he's still standing there thinking about the fact he IS dying.  And, they're thinking, "yuck, what am I supposed to say to that?"

He lost 2 pounds last week and 3 the week before.  He wasn't  doing anything to account for the loss. He wondered if the C was eating him up.  Who knows it might beat dieting.

He was tired more that he wanted to admit.  

Sleepless Night

 When he went to bed, his wife asked him if he was okay.  he replied probably not. Then he began crying.  He felt like he was letting her down. 

   

He couldn't sleep with a bi-pap and cry at the same time so he went into the great room for a couple of hours and just thought about things.    

   

He didn't want to go through what would be entailed with a shorter bowel.  And he didn't want to go through months of wound therapy because his belly split like it did last time.  But, if she wanted him to he would. 

   

He decided that he would get a second opinion about what his daughter, the doctor, was said from the surgeon who nursed him back to health the last time and from the oncologist.

   He decided that he would not have any surgery or oblation.  No surgery was easy. He didn't want the side affects.  

   

He thought his small bowel was a breeder of neuro endocrine tumors (NETs).  The 3 lymph nodes that are now tumors if removed would only be replaced by more tumors.  And that eventually the NETs would go to his Liver, Lung or Brain and take him out.       

   

It had taken almost 10 years for the nodules in 2011 to cause problems if they were in fact the cause of his internal bleeding problem and not just some directiculum that decided to bleed.  He didn't think he'd get 10 years this time before they cause problems.  But he'd get some time and it will be high quality life like he was experiencing now, not short bowel diminished.

   

But, damn it, this is not the way he wanted for things to work out.  His wife needed him.  He felt horrible about deserting her.  

   

When they talked in the morning she said, "All I ever wanted was to marry a man who loved me totally for who I am.  And I got to do that."  

He cried!

Now What?

He had a daughter who was a physician.  In a conversation with her mother (his wife), she said "you must not let anyone operate on him."  

Because that could mean any number of things, he asked her during a visit to the beach what she had meant.  Did she mean she didn't like the local doctors and hospitals and wanted him to go to Houston for his next surgery?

Unfortunately, it wasn't that simple.  She meant his chances of recovering from surgery with good quality of life had a very low probability.  

Her thoughts were: 
1. He had big time problems with low blood pressure last time and probably would again. 
2. Diabetes has left his tissues very weak. She compared them to wet Kleenex and said that sewing wet Kleenex doesn't work.  And, that the reason he had a gaping wound last time was because of this problem. 
3. She thought he had so many antigens in his blood now that he couldn't count on there being enough blood if something goes wrong in surgery. 
4. Last time he was in near Kidney failure.  He should expect that again.  And he might wind up on dialysis.
5. He has short bowel symptoms now.  If more of his small bowel is removed, he will have problems with dehydration because he would not be absorbing enough liquids.  He might be forced to drink Ensure for nourishment because it passes through the gut the slowest or be hooked up every night for TPN.  And he would experience much more problem with diarrhea probably to the extent that he would be home bound. 
6. The possibility of an infection taking him out is high.     

He asked her what would happen if he had the oblation  procedure.  She said she thought poking a hole in his bowel trying to reach the nodules was a bad idea.  The weak tissue healing problems and the possibility for a puncture becoming infected leaving him in the same messed up bowel situation that he had last time.  Therefore not a good idea 

She said he could fight the cancer and probably have these results which would limit the quality of life or he could decide to make the most of the time I have left and do nothing. 

He asked, "What do we do if it metastasizes to my Liver or Lung."  She said to ask his oncologist.

He thought Holy Shit!

NSRA Louisville

Tonight I got home from the National Street Rod Association Nationals in Louisville, Kentucky.

I was sick in June and unable to make this years Hot Rod Power Tour from Detroit, MI to Arlington, TX.  So Harold and I made a trip to the Louisville Nats this year's long distance trip in Bobbie Sue, my '51 Chevrolet.

A hot rod trip wouldn't be complete without a few minor mishaps.  And this one wasn't different.  After we reached Louisville and the event registration, the electric fan for the radiator stopped working.  The temperature gauge pegged the Hot mark and steam began to escape from the radiator cap.  We wiggled the wires it started working again and didn't give us any problems afterward.

On the way home we had some oil pressure issues which were solved by adding several quarts and increasing the viscosity from 10w40 to 20w50.

The Louisville Nats showcase hot rods and muscle cars primarily from 1928 thru 1972.  There were 12,000+ participant cars and 50,000 spectators.  The show is held at the Kentucky State Fairgrounds and features 400,000 sq.ft. of vendor displays with everything from A to Z for performance automobiles.

Bad News!

He sat in the examination room and waited for the doctor.  The nurse had been in earlier with her questions.  He glanced at the magazine he had brought with him.  Glancing.  Flipping pages.

The doctor came into the room, sat on his stool and said, "I've got some bad news."

His brain froze.  Bad News!  What Bad News!  No doctor just comes out with "Bad News."

The doctor said, "Last week's CT scan shows that you have an enlarged lymph node on the mesintery where the tumors were taken from.  In January, this lymph node was 2.4mm now it's 3.0mm."  The doctor took out a ruler and showed him how big 3mm was, about the size of a quarter.

The doctor said, "Are you under the care of an oncologist."

"No," he said.  "I know who to see and was going to start going to see one for follow-ups."

"It's time to see him."

As he drove home, a wave of sadness flowed over him.  Drowning him.  "Why couldn't it have waited longer?  I knew it would be back.  Why so soon?  I don't want to go through that again."

When he got home he Googled mesenteric lymph nodes: "With the advent of multidetector computed tomography, routine evaluation of mesenteric lymph nodes is now possible. For the first time, normal mesenteric nodes may be reliably identified noninvasively. Because of the increasing volume of cross-sectional imaging examinations being performed, lymph nodes in the mesentery are being detected with increasing frequency. This is often an unsuspected finding. Although the detected lymph nodes may be normal, there is a large number of disease processes that may lead to mesenteric lymphadenopathy. The most common causes of mesenteric lymphadenopathy are neoplastic, inflammatory, and infectious processes. Many of these causes may also result in lymphadenopathy elsewhere in the body. It is important to recognize mesenteric lymphadenopathy in patients with a history of a primary carcinoma because the lymphadenopathy affects the staging of the disease, which in turn will affect further management. In addition, mesenteric lymphadenopathy may be the only indicator of an underlying inflammatory or infectious process causing abdominal pain. The distribution of the lymph nodes may indicate the exact nature of the underlying disease process, and the correct treatment may then be instituted. Besides neoplastic, inflammatory, and infectious processes, many other disease processes may occasionally result in mesenteric lymphadenopathy."

Oh yeah, that's really clear.  

So, for now, he waits until next week to see the oncologist.

Are You Afraid?

The doctor examining his eyes backed away from the scope she had been looking through and asked, "Are you afraid?"  She was referring to the surgery he was undergoing in five days.


"No, not afraid." he replied.  "But it makes you think about your mortality."


Eleven years before he faced death and the possibility of a shortened lifespan.  He had gotten a fish bowl and filled it with marbles.  He put in a marble for every week he hoped to live.  One thousand and forty marbles.  The plan was to take a marble out of the bowl every week and throw it away.  It would be a reminder that if he got to thow all of the marbles away he had lived the full life he hoped for.


Throwing away marbles each week went the way of other "good" habits like eating smaller portions and drinking eight glasses of water a day.  While he stopped throwing the marbles away, he kept the bowl full of marbles.


He looked at the bowl holding the remaining marbles.  "How many more will I be able to throw away?"

HRPT - Home Sweet Home in Alabama

Home Sweet Home!

We made it home on Monday. The first 900 miles coming home were high speed and trouble free interstate driving. But, our epic journey wouldn't have been complete without another adrenaline jolt. So just as we got to Pensacola, FL, the front brakes started making a terrible clunking noise and then the engine died when we were caught up in slow moving traffic.

We crept back into Gulf Shores the final 40 miles trying to apply the brakes as infrequently as possible. We thought the engine dying was related to over heating so we turned off the air conditioning everytime we slowed down. It was really HOT without a/c.

Yesterday, Harold and I met at the shop to check out the brakes. It turned out the problem was that a bolt holding the caliper had come loose. (The same problem we had to fix on Steve's car back in Indianapolis.) The good news was that we could fix it at the shop where we had the needed tool. A tool we did not have on the trip.

We also replaced the thermostat with a cooler rated one, replaced the temperature sender, and the fan clutch. We're hoping that this will cure the problems of running too hot. If this doesn't fix the problem, the next step will be to switch the oil we are using to Royal Purple. The circle track boys swear by it to reduce engine temperatures. I don't want to think of what we'll have to do if that doesn't fix the problem.

We had a great time and are already planning to make next year's HRPT. We think "Bobbie Sue" deserves a third chance. She is an awesome car to drive. With almost 500 horsepower waiting to leap, a comfortable ride, and excellent handling she is all fun. But before she's ready, we're going to repair the alternator, add some insulation to the inside of the car, swap out the transmission, and switch from hydrostatic power brakes to vacuum power brakes so she'll stop as well as she goes.

Next year's Hot Rod Power Tour will run from Detroit to Dallas. Look for us to come by on a road near you.

Tom

HRPT Day 8 - Milford

This morning there was a special meeting at the General Motors Milford Proving Ground for the long haulers. I counted the number of cars on a row and the number of rows. I estimate that there were about 1,100 cars at the venue. Many people didn’t stay for today’s meeting. We probably had a total of 1,500 long haulers.

Milford was the industry's first dedicated automobile testing facility when it opened in 1924. It covers 4,000 acres and has 132 mi of roads representative of conditions found on public roadways and other specialty surfaces for vehicle testing. 

Our venue today was the VDTA ("Vehicle Dynamics Test Area"), also known as "Black Lake", a 67-acre pad of blacktop for vehicle dynamics testing. Waterfowl have been known to try to land on this "lake" of asphalt. At the ends of the VDTA are two semicircle tracks used for accelerating vehicles up to high speed before entering the pad. A controlled low-friction area made of ceramic tiles is on one side of the pad. Another area is coated with the asphalt sealant Jennite and can be watered down to produce a low friction surface. They had an airplane fly over and take a group photo of all of our cars. And they handed out posters, a sign for the garage wall, several $ off coupons, etc.

The very best part was when they let us drive on parts of the test track. Our driving tour lasted for more than 20 minutes and included many different segments of the track. GM had the good sense to not let us on the big, high speed oval. We probably would have killed each other showing off. But, we did get up to speed in other areas. The super banked turns were a blast. Other segments were like a sports car race track with hills and blind curves, lots of curves.

They gave away a 2011 Camaro SS Convertible. I didn’t win it.

Tonight we are in Springboro, OH. Only 800 miles to my very own bed and pillow.

Tom

HRPT Day 7 - Muskegon to Detroit

Today we drove from Muskegon, MI to Detroit in the rain. 

The temperature was 58 degrees so Harold broke out the jacket we teased him about when it was in the upper 90s. At our morning gas stop, they had two pallets of impulse items beside the pumps. One pallet contained firewood and the other contained salt pellets to melt ice. Harold looked at me and said, "We need to go back South."

When we got to Steve's motel, his car wouldn't start. So we broke out the golf umbrellas and proceeded to un-stick a choke and jump start him.

The Detroit venue was at a pretty park on lake St. Claire. The lake is between the US and Canada. It's either the littlest Great Lake or it's a not so Great Lake.

Tom

HRPT Day 6 - Indiana and Michigan Are Pretty. The Locals Friendly.

Indiana and Michigan Are Pretty. The Locals Friendly.

This morning we left Indianapolis for Muskegon. It was 65 outside and we drove with the windows down.

They have the prettiest grass; there is no drought in Indiana or Michigan. The grass is a beautiful shade of green and as we drove past fields where hay was being cut it was a delightful smell. The funny part was it smelled like a freshly cut watermelon.

It rained on us for a couple of hours. Eventually the convertible top leaked a little where the top sealed against the windshield. We pulled out a towel and laid it in our laps and enjoyed the rain cooled day.  

At one gas stop we ran across a grandfather and his young grandson enjoying a wet drive in this "interesting" rod.  We lent them some Rain-X to help with the lack of wipers.

The venue today was in downtown Muskegon. Four thousand cars and one thousand parking places. Not pretty.

Tonight we opted for something besides burgers and pizza. We went to the local KFC for fried chicken. The chicken was ordinary. I said hi to an elderly gentleman as I passed where he was eating. On his way to his car he stopped at our table and sat with us while we ate. His name was Leon. He's 88. Buried two wives. Used to be in the grocery store business. He took us on the grand tour of Grand Haven, MI which included the beach at Lake Michigan at sunset, an overlook of the town from a large hill, a beautifully restored downtown area and finally back to our motel. He drove an immaculate '82 Mercedes coupe with 80,000 miles.

Tom

HRPT Day 5 - Rolling on the Bricks

Rolling on the Bricks

Yesterday we drove 290 miles from Nashville to Indianapolis. My car behaved and nothing broke.

We are driving with Steve Weeks of Hope Hull, AL. Steve is driving a 1972 Dodge Demon. He bought the car when he was in college in 1972 and has held on to it all these years. He restored it about 4 years ago. We met him at Bowling Green last year and he was one of the people who helped us home last year when we broke down in Birmingham. Anyway, yesterday his brakes began making a terrible clunking sound when he applied them. So last night we did surgery on his front brakes in the parking lot of the hotel. One of two bolts holding the driver's front brake caliper in position on the rotor had fallen out and the other one was loose. After 5 auto parts stores we went to Lowes and found a bolt that will work until he can get it home and get the right bolt. We then double checked the other side and found both bolts loose; we worked on his car until 11pm.

The big deal at this venue was to drive your car around the track at the Indy Speedway. We signed up for the drive. But, wound up playing parking lot mechanics instead.

Today we drive to Muskegon, MI. USA Today's weather map shows it will only be in the upper 70s. That is wonderful news.

Tom

HRPT Day 4 - A Day With All Sunshine Is Hot!

A Day With All Sunshine Is Hot!

Today's update is boring. Nothing broke. In the evenings tour participants walk around the motel parking lot looking at the the cars and telling lies about how fast their cars are. The consensus of parking lot wisdom is that I have a defective temperature sending sensor and that that is causing a false temperature gauge reading. The gauge ran pegged on Hot all day today but the car displayed none of the symptoms of a Hot motor. So, I'm more comfortable. Except for one time today when I glanced at the gauge and panicked. I had forgotten momentarily about the gauge problem.

We drove 310 miles today. We must have driven through 20 places on the highway in Alabama where tornados tore up the trees back in April. They've been cleaning up the damage, but it still looks bad.

Our venue today was the parking lot of the Tennessee Titan's football stadium. According to the TV weather tonight, Nashville set a new record high temperature of 96 this afternoon. It felt like 126 on the asphalt parking lot. The venue highlight was an Autocross course where tour participants did their best to drive very quickly around a circuit marked with orange cones. It was great fun to watch.

Tomorrow morning we're off for Indianapolis. As of tonight, we've driven 1600 miles since last Wednesday.

Tom

HRPT Day 3 - It Just Keeps Getting Better.

It Just Keeps Getting Better.

Last night we went to bed without 1st and 2nd gears. The plan was to get up this morning at daybreak and head for Gulf Shores and swap cars.

When I turned the ignition switch this morning, nothing happened. Upon closer examination we found that the back of the original 1951 switch had separated from the part the key slips into. Inside the switch are three contacts which are supported by small springs. Apparently, one of the springs had burned up from the heat of the electricity passing through the switch. 

Since I am traveling with McGiver, this was no big problem. After an hour, Harold "McGiver" had carved a metal post from an electrical butt splice part and substituted it for the missing part. Bobbie Sue cranked and we began a day of driving without 1st or second gear. Which is pretty good except when you have to start from a stop at a light or stop sign. I confess the rolling Hollywood style stop was used many times.

We made it to Gulf Shores and discovered that the belt squeal we had heard intermittently for the last couple of hours wasn't the power steering pump as we had guessed. It was our alternator on its last legs. We probably couldn't have driven another 50 miles before it locked up.

At the shop, we prepped the '84 Mustang GT350, "Sally John", for the road. She had not been driven on the road in a year so her air conditioner had to be charged and the fluids checked.

While we were in the process of charging the air conditioner, the Mustang stopped starting. After 30 minutes we found a broken wire to the coil. We re-attached it and now it starts just fine. We are now scratching our heads and wondering if this is cause of the intermittent starting problem we've seen over the past couple of years. We were really glad to find this at the shop before we hit the road. The shop is air conditioned and working on a car in the cool is much better than on the side of the road in the heat.

This trip is a shakedown trip for the Mustang. Although its restoration was completed more than four years ago. Its longest previous trip was less than 100 miles. Today we stopped along the way and added more Freon. It's finally cooling tburn up the engine? Is it just a gauge problem?he interior like it should. We're hoping that the temperature gauge is not working properly. It pegged Hot most of the trip. But, the radiator was cool enough you could put your hand on the cap and the burp jug did not indicate that any coolant was boiling over. I'm worried. Harold says don't worry. Its just a sick gauge. The suspense continues. Will we burn the motor up?

Tonight we are in Prattville, AL. We are two tired puppies. We've been on the road or swapping cars for over 13 hours today. We never made it to the venue site which was a drag racing track on the outskirts of Montgomery. We're off again tomorrow. The destination is Nashville.

Tom

HRPT Day 2 - Drive Till It Breaks Redux

Sunday, 5 June, Hot Rod Power Tour 2011 - “Drive Till It Breaks Redux” - We've been having a blast driving my ’51 Chevrolet. It has a really choppy exhaust and we've been running it unmuffled through the side pipes. I sounds awesome, like an 8 cylinder Harley. It is a favorite with the crowds; so Harold and I spend a lot of time grinning. The a/c went on the blink on the way to FL. Then we got it working again so we weren't dying in the heat. The Cocoa Beach, FL venue was great, lots of good seafood. 

Today, we stopped twice on the way to Valdosta, GA to help others who had broken down. We're carrying enough tools for a small garage. They didn't have the right tools.

Then at the last exit of the day, I reached for 1st gear on the off ramp and it wasn't there. I grabbed for 2nd and it wasn't there either. We jacked the '51 Chevy up in the parking lot, crawled under and checked for a broken shift linkage. But, the problem is inside the 4 Speed Muncie. So as we go to bed tonight we’ve driven 800 miles and have reverse, 3rd & 4^th gears. L

We can't make it to Detroit with only 3rd and 4th so we're up at daybreak tomorrow taking Bobbie Sue back to the garage and swap for my '84 Mustang - "Sally John". Then we are driving to Montgomery, AL to rejoin the Power Tour. J

I hope Detroit or Bust is just a slogan.

Tom

Three Bags Full

He sat in his recliner journaling.  His belly was cramping.  Last night his stool was black again.  And, he pooped 'three bags full'.  He waited for the fever and the dizziness to begin.  His new surgical oncologist was out of town.  If the bleeding had to be stopped surgically, he'd rather him do it.  But for now he had to wait. 

The cramping hurt his belly and his psyche.

Off To See The Doctors

Today he went to see his family doctor and then to see his new surgical oncologist.


Surgical oncologist.  Link two of the words you really don't want to hear applied to your own medical problem.


The surgeon was very helpful.  The nodules didn't look like scar tissue to the surgeon.  To him they looked like tumors.   What they are exactly won't be determined until they are out.    He said they were most likely neuro endocrine tumors, NETs.  What we used to call carcinoids.  There, a fancy, new name for my old problem.  If they were NETs, he wouldn't know if they were benign or malignant until they came out.

The surgeon said the operation would begin laproscopically and only proceed to "open everything up" with a big zipper if he couldn't get to the three nodules the CT Scan had exposed.  When asked about using a big zipper and feeling every inch of the small bowel for NETs (the way they were first found in 2000), he said, "The problem was the amount of scaring and adhesion he expected to find.  In 2000, your gut was like freshly cooked spaghetti - slippery, unstuck.  Now, he said, your gut is like spaghetti that has been in the refrigerator for a few days.  It's stuck to itself and to the anti-hernia mesh that was put in place.  I might do more damage trying to take it out and feel it than the good I might accomplish."

Then he said, "If I do it laproscopically you'll be in the hospital about seven days.  If I make a large incision, you'll be in the hospital 10 days to two weeks."

What?  Two weeks!  They send you home in two days after brain surgery these days.  I am really going to be messed up.  He thought about the lengthy time it took to recover in 2000 and his spirits sank.  The reality of his 2000 recovery came back hard and heavy.  Post-surgical depression, incontinence, pain.  He lost twenty pounds during recovery last time because he felt too bad to eat.  And for him that's saying a lot.

The surgeon explained further why you didn't want to leave the nodules to grow and prosper in your body.   Why they really needed to come out.  Now! 

Of course, in medicalese, now, means when they have an opening in their schedule.  He always thought they'd be in a hurry.  But apparently not.  In his case, 'now' means is in a month or so.

What Is Your Opinion?

He went to Shreveport to see his friends.  The Oncologist and the Colo-Rectal Surgeon who had pulled him through ten years before.  Men whose opinion, and knowledge he respected.  They knew what they were talking about.  They had proved that to him before.

"Why," he asked.  "Do I have to have these nodules cut out.  I didn't know I had them before they did the CT Scan in January.  They weren't connected to the bleeding.  And, as best I can tell they aren't bothering anything.  I don't want to be cut open just for grins.  Do I really need this surgery?"

"Yes", they replied.

"Oh Crap."