learning about hypoxia

We had a few days between doctor's appointments so we decided to tack on some adventures to the amazing Carol and Vern Excellent Adventure.

On Thursday we drove to Cheyenne, Wyoming to see the Union Pacific 4014 steam locomotive, called the Big Boy, the world's largest steam locomotive. The 4014 weighs in at 1.2 million pounds, 120 feet long, with 4 guide wheels in front, followed by two sets of 8 drivers, each over 6 feet tall and followed by 4 guide wheels – 4-8-8-4. The “Big Boy” was built for scaling the slope between Ogden, Utah and Cheyenne. There were about 25 of them built. Two of them are in Cheyenne. Only 8 are still intact.

Recently the 4014 has been rebuilt and the UP has been driving it around the country to show it off. What we didn't realize was that the 4014 was in the steam house (shop) which is not open to the public. We were able to see a Big Boy, 4004, at one of the local parks.

Apparently, the shop has tours  a couple of times a year, so if you are interested in seeing a working locomotive, you should check out one of the rare steam tours. The UP is planning to take the 4014 on tour at the end of September, heading for California and looping through Texas and returning through Nebraska. Check the UP website if you are interested in the itinerary.

We took the city tour in an old shuttle bus. It was a good tour, except the wood seats were killing my boney ass.

We toured the UP Museum on Friday morning before we drove west toward Laramie, through the mountains. The scenery was beyond compare. We couldn't believe how green everything was. We headed south at Laramie, across Colorado, to Granby. Turned at Granby and headed to the west entrance of the Rocky Mountain National Park. Showed our National Parks card and headed into the park. It was a beautiful day, sun shining, temperatures in the mid 70s and no wind.  The scenery was incredible.  We had hoped to see some leaves changing color, but it was early, we saw almost no color, a couple more weeks at least.

We were near the top of the mountain pass, we pulled into the Alpine Visitor Center, about 12,000 feet in elevation. I got to experience hypoxia, lack of oxygen. I needed to pee, so we drove through the parking lot and luckily got a handicap parking spot close to the toilets. I got out of the car with my portable oxygen machine, walked in front of the car, about 50 feet to the toilet, there was a line of about 20 people waiting so I headed for the back of the line. As I was walking I became aware that my breathing was becoming very labored, I was getting dizzy and things were getting darker. I looked at the curb and it was calling, saying, you need to sit down. I turned and saw a guy a few feet away, I asked him if he would help me get back to the car and he grabbed me and helped me back to the car. I was so dizzy. I don't remember that good samaritan's face, but I will forever remember his help. Thank you, sir, whoever you are.

We exited the parking lot, I was still in a daze. Noticed that my oxygen machine wasn't working properly, never thinking that it was not designed for that low of partial pressure. But it started cycling normally and I started getting oxygen. About 5 minutes from the visitor center, my thinking began to clear, I was still extremely short of breath but getting better. I put the oximeter on my finger and it read 60% oxygen, which meant that likely I was in the 50s, maybe the 40s in the past few minutes.

We drove down the mountain and spent the night in Estes Park. That is an expensive place!  The drive through Big Thompson was also very beautiful.  Lots of tourist traffic.

We drove into Fort Collins on Saturday morning and hooked up with a bunch of Bison fans at a local
bar and watched the Bison defeat the University of Delaware. Great game. Great group of people. We had a lot of fun. I hadn't slept well the night before so we found our hotel, late afternoon and I took a two-hour-long nap. Sunday we drove home through Cheyenne.

Nice little getaway. Dr.s appointment on Tuesday morning.

Summer projects

We had a great summer, got lots of small and some large projects completed.

We hired our son-in-law, Daniel, a handyman in Las Vegas, to work with us for the month of June.  It was a match made in heaven.  Daniel is a hard worker, we hired him by the month and he worked 50 to 60 hours a week.  When I say we, I mean that Daniel did the work and I sat in a chair and supervised the work... it turned out to be a great team, we had a good time.

We worked on several outdoor projects.  Daniel installed a small deck, 3 feet wide, next
to the patio doors in the master bedroom.  There is just enough space for a chair and it has a commanding view of the "zen" raked gravel garden, what the Japanese refer to as karesansui, a garden without water.  Daniel finished installing flower bed borders and installed an irrigation system under the gravel.  The deck gets the afternoon shade and is a great "zen" place to read a book or just sit for a spell.

Daniel installed about 30' of boarders for the entryway garden and filled in with pea rock.  And
Daniel built a lantern with my instruction.  He learned a lot about how to use a table saw with this project, there were lots of odd angles.  I would explain the next step in the construction at the end of the day and the next morning the work would be done, Daniel had gone out after supper and completed the next step.  This lantern took the better part of the month as we worked on it only short periods at a time.

Here are three pictures of the entry garden that I took today.  The rock retaining wall was another project that Daniel and I did several years ago.













The wood shed Daniel built last year and the lantern in the foreground is the one he built in June.  The boxwoods in the round garden bed are deer resistant, evergreen and will grow 4 feet tall.

We installed trim in the master bedroom shower using Ipe (tigerwood), the same wood you see being used for exterior decks, it is water-resistant and shower trim is a perfect application.  This was really finicky work and it took the better part of a week to complete.  It was a new skill for him so I really appreciated that he worked slow and got it right.  Before Daniel got here, one day I heard a hissing sound from the shower area and it went away before I could figure out where it was coming from.  Then the next morning, I discovered Obi, our cat in the tub trying to figure out where the hiss was coming from.  I guessed that one of the water hoses was leaking under the tub deck, so I turned off the water and as Daniel was due in a day, it was the first project that he accomplished, remove the tile panel and disconnect the plumbing for the tub faucet.  So my desire to not reinstall the plumbing under the tub deck, I fabricated a "steampunk" faucet that I think looks pretty appropriate to the house.

Lets see, what else?  I welded up some brackets and Daniel installed a railing in the tower room above the front entrance.  He used up some timber frame lumber from the house construction and built railings on the deck for the shop.  He installed trim on the fireplace surround.  He replaced the fuel line on the lawn and garden tractor.  He sorted through a ton of misc steel pipe, siding, etc.  He cleaned and organized the garage and shop.

We miss you Daniel!!!!!  You are such a good son-in-law!

Rainy days

Woke up this morning to a gentle rain.  Carol started a fire in the fireplace.  The cat has been stomping around the house, eyeing the rain soaked outdoors with an air of disgruntlement.  Twice he stood at the open door, stuck his head out an inch or so, fluffed up his tail and backed inside.  He looks up at us as if to say, "fix it, I want to go outside."  Disgusted, he curls up in the chair and is

sound asleep in a minute... wish I could fall asleep so easily.  Carol is sitting on the couch, cradling a coffee cup in both hands and reading a book on her I-pad.

I too am sitting on the couch, drinking coffee, listening to the rain, and watching the rain through the window.  I thought I would catch up on some writing, as I noticed that I hadn't written anything to my blog since April, so I thought that a rainy day would be perfect to remedy that situation.

We have had a lot of rain this summer and everything is still green, an emerald green ... it is certainly beautiful and also wonderful that we haven't had but one or two small forest fires, a couple of acres or less, this summer.  Typically, our green grass turns brown by the end of June.  The Black Hills are special this year and this week the leaves are changing color.

We had about half an inch in the rain gage by 8:00 am.  This year we are on path to be the wettest year on record, in second place now, only an inch or so behind the record and still 3 months to go this year. We may set a new record today, it is forecast to rain all day.  I think with our August deluge of 6.5 inches here at our house, that we have surpassed the record.

The deluge came over a period of two hours on a Friday afternoon (1 to 3 pm).  Carol and I watched the weather radar and the thunderstorm just kept reforming directly above us.  And it rained buckets.  There was not a breeze and the rain fell straight to the ground.  It was really quite fascinating to watch.   At 3 pm it was done and the sky cleared up and the rain quit.

Our neighbor Mark R. called to tell us that we were trapped, the roads from our house, we are on a loop, were underwater on both ends.

Carol and I got on the 4 wheeler and drove down the road to the west and the water was flowing swiftly over the road.  We were amazed with the amount of water flowing over the road.  It took a week for someone up creek to claim the two kayaks.

Then we drove up past the house and down the other side of the loop.  There is a confluence of swales here, one, the creek from the right, and unexpectantly, one on the left.  The water was a foot deep, 75 feet wide and flowing at 20 miles an hour.  The power of Mother Nature is remarkable.

My dear friend Tim Berreth and his lovely wife Jacki arrived that same day.  They had driven out to our house, a during a brief lull in the storm, at least close to it anyway and had to turn back.  They were stopped by the water over our loop.  So they turned back to Custer.  After they turned back the culvert washed out behind them. Lucky day.  This is the confluence of the Upper French Creek, and there was a lot of water flowing from that direction.

There were two aluminum canoes wrapped around trees.  We looked at them for several minutes before we figured out that they we canoes.

We were forced to use a mimimun maintenance road, think logging road, out of the development.  That road too had significant water damage but was passable.  The County got permission from the Forestry Service to blade the road, the first time in over 5 years.

Tim and I were in the same study group at University.  We spent a lot of time SCUBA diving in the Minnesota area lakes and drinking beer. I don't see him often but he is one of those friends that pick up the conversation where we left off, like it was just yesterday.

3 weeks later and the road to Custer has been repaired and the culvert replaced with a new one.  6 weeks later and the damage to the Forest Service road has also been repaired.

Still Kickin'

Had chemo yesterday. This morning, sitting in my recliner with a big mug of coffee, sun streaming through the windows.

Carol and I feel really lucky, we really expected this cancer to go a different direction, but here I am over two years past my initial diagnosis, beating the odds, still kickin'.

I had a CT scan yesterday, the first since January and the first since I started therapy with Keytruda. We got some good news and some bad news. The good news is that my cancer has not changed significantly since January. The bad news is that the scan shows the continued deterioration of my lungs.  It is difficult to know the cause of the additional lung scarring, it could be a virus, or perhaps from inactivity during the winter months or it could be due to the Keytruda.

Keytruda is not a chemotherapy per se, it is an immune system stimulant. The doctor described it as putting a supercharger in your car... lots of horsepower, but one of the side effects is that the brakes are disabled. One of the common side effects of checkpoint inhibitors, like Keytruda, is that they can also stimulate the immune system to attack the body, especially the internal organs. To enable the brakes on the immune system, it is necessary to discontinue treatment with Keytruda and administer a steroid, such as Prednisone.

So the doctor, Carol and I discussed our options. One was to stop the Keytruda and administer 30 days of Prednisone, followed by another CT scan. Then if things had improved, restart Keytruda. The second option, the one we chose, is to continue with the Keytruda, monitor my breathing VERY CLOSELY and if there is any change for the worse, however insignificant, to call the Cancer Center immediately and then start the regimen of Prednisone. If there are no changes in lung function, I will have another CT scan at my next Keytruda infusion.

If it appears the lung problems are due to the Keytruda, then it will be discontinued. There are not any options beyond treatment with Keytruda at this time. There is a chemotherapy agent, called Taxotere, which has worse side effects than the Pemetrexed that I struggled with for over a year. Carol and I both decided that going back on a drug like that would be an unacceptable loss of quality of life, just because of the chemo brain fog.

Personally, I think a big part of my lung problem was the winter weather. When the temperatures were below about 50F I couldn't take but a few steps out the door and I would be breathing hard and start coughing. And when the temperatures got down in the single digits I would have a hard time catching my breath after only a couple of steps. And unfortunately, our winter this year was a cold one. So we stayed indoors a lot. The temperature here today is about 70F. Carol and I went for a walk around the house, looking at our gardens and landscaping, then we walked out into the woods, we were out for about an hour and I didn't have to sit down or stop because of shortness of breath or coughing.

So hopefully tomorrow will be nice enough for another walk.

Thanks to all of you for your continued thoughts and prayers as we navigate this strange world we find ourselves in.

Love,

Van

hacked, burned and poisoned

Dear friends,

Good news, my two year cancer anniversary comes up in a week, March 5^th. The two-year life expectancy for  stage IV lung cancer is less than 4%, so I am doing pretty good, if I was in school I would be getting an A.

The 5-year life expectancy is less than 1%, even with all the new miracle treatments: the immunotherapy drugs, the targeted drugs. Lung cancer is the most deadly cancer, killing more than the next 4 cancers combined and one of the poorest funded research efforts, ranking about 10^th among cancers.

I am on a new chemotherapy drug, Keytruda, it is a form of immunotherapy. I have had 3 infusions and so far, no side effects. Not that I need any, I have a collapsed lung, COPD and asthma. I am on oxygen 24 hours a day. I was complaining about not feeling very good yesterday afternoon, and Carol reminded me that it was most likely the cancer, I guess I like to think that it is mostly the COPD, but she is probably right. If the Keytruda works, I have about one year, 6 months if it doesn't.

So I was curious why I am doing so well. I asked the doctor, he said, “some of it is due to genetics, some to a bit of luck, but a lot has to do with fitness level and attitude.

He said, “you came to me very fit, like an athlete. You had the strength for surgery, radiation, and chemotherapy. (I saw another descriptor that I like better, 'hacked, burned and poisoned'.)

I have always been active, attracted to sweat I guess, I particularly liked the feel of a shovel in my hand and a wheelbarrow. Swimming, rollerblading, walking, bicycling, weight lifting, speed-bag, and judo also got regular time. I always liked myself better when I was busy. And this has been the hardest part for me to accept, my ego is still tied to that lifestyle.

As for the attitude thing, most of that talk goes over my head. People tell me all the time, 'you are so brave', 'you are a warrior' and you know what, I don't realize that I am doing anything... I don't feel brave, I just don't know any other way to act.

I suppose that a lot of that comes from studying martial arts for most of my life. In judo especially, when someone throws you to the ground at 30 miles an hour... there is no fantasy there, it is pure reality, the landing shakes the living crap out of you. You may not be thrown that hard again that evening but after a couple of hundred solid throws/landings and some not so solid throws/landings (these are the worst because you don't land right and the risk of injury is higher but you learn self-preservation) your mind becomes pretty focused. So I come about the sense of reality from judo.

But there is another part about attitude that is important, my wife, Carol, stresses that we have a choice, we can choose to be happy, to be positive, when we wake up in the morning we make a decision about how we are going to meet the day, we can make a decision to be happy or not. How we feel any day is how we decide to feel.

I had a handmade poster on my bulletin board at work that said, “what you think is coming at you is really coming from you.” It is our choice how we respond to those things that are happening in our lives.

We all win some: we pass the test, we graduate from high school, we get a job, we get married, we have kids, they give us grandkids, we retire and more. We lose some: we flunk the test, we crash the car, one of our parents die, god forbid, one of our kids die, we lose our job, we get divorced and more.

Jigoro Kano, the founder of judo said, “Paradoxically, the man who has failed and one who is at the peak of success are in exactly the same position. Each must decide what he will do next, choose the course that will lead him to the future. “

The worst thing is not failing, we all fail, the worst is giving up, doing nothing. Don't give up, push hard into your last moment.

Love,

Van

Thanksgiving story

On this Thanksgiving I would like to share a story with you, a story that affected me deeply before I knew I had cancer and now, has become even more poignant.

The story was written by Bob Heintz, my mother's second husband. They married when they were in their 80s and they made a cute couple. Bob was a special person, he had a love of people that was to be admired. Bob discovered that he had lung cancer a couple of years into their marriage.

Bob wrote, “The parish nurse in our Lutheran Church decided to start a cancer support group to be held on a Tuesday evening. I wanted to contribute something, but could not attend because I had a fly tying class on the same evening. I wrote the enclosed paper and told the nurse she could use any part of the article, or all of it, or none of it.”

My feelings about my cancer.

Can you imagine an instant death due to an accident or severe heart attack where the deceased did not have time to say goodbye or tell someone that they were loved?

I'd rather have cancer.

I would not want to have Alzheimer’s disease. A disease that is easy on the patient, but dreadfully awful for the family to see a parent whom they love but absolutely no response from that parent.

I'd rather have cancer.

I would not want to lose any of my five senses.

I need my sight to see friends, flowers and sunsets.

I need to smell cookies being baked and lilacs in the spring.

I need to taste a cherry pie or a vine-ripened tomato.

I need to touch a friend's hand or give someone a hug.

I need to hear birds sing and children laugh.

Rather than lose one of my senses, I'd rather have cancer.

Imagine mental illness so severe that it's impossible to distinguish right from wrong, or be incapable of loving someone. Or having a severe stroke, incapacitated, with mouth agape and empty eyes staring into space, or having a depression so deep that one considers suicide.

I'd rather have cancer because it gives me time to tell family and friends how much I love them. I have time to develop new friendships. I have time to tie a few fishing flies for my grandchildren and friends. I still enjoy humor because I believe laughter is fuel for the soul.

I have time, and I take time to thank God for allowing me to have such a good life, and time to ask his forgiveness for my transgressions.

My one request is that as I pass on to the new home with my Lord, that I be in company of a relative or friend, and that as the light of the earth fades I would like to hear a Loon call to me from across the lake.

Bob Heintz

Thanks, Bob for sharing the way with us.

Love to all on this Thanksgiving Day,

Van

Mayo Clinic adventure

We are home from our Mayo Clinic adventure.

And disappointed, we had hopes of finding a magical cure. Well, not really, not a magical cure, but something promising.

To summarize the past few months.  My last chemotherapy was 10 July 2018.  I had seen our family physician in late July, she was concerned about my breathing and ordered an X-ray and recommended that I get a CT scan.  She also prescribed oxygen.  It got two oxygen machines that same afternoon.  I was scheduled for chemotherapy the following day and when we met the oncologist, he postponed chemotherapy for that afternoon and scheduled a CT scan.  The next day we returned to the Cancer Center, the CT scan showed significant pleural effusions (lung scarring).  He noted that the chemotherapy drug that I was taking was suspected rarely, very rarely, to cause pleural effusion, but it was unknowable if this was the cause.  As a precaution, he canceled chemotherapy until we knew more.  He scheduled a lung function test and I met with a pulmonologist the following week.  My FEV (forced exhilation volume) was 2.54 liters, down from 5.45 liters 18 months earlier.  I was put on steroids and an inhaler for 30 days.  I saw only modest improvement to 2.67 liters.  The steroids were quite stimulating, I had incredible energy for 30 days and gained 10 pounds.

As a side note, about 5 weeks after the discontinuation of the chemotherapy, quite suddenly I noticed that my thinking was becoming more clear, it is like coming out of a fog, the medical industry calls it "chemo brain."  It was wonderful having my brain back, Carol said, "I have my husband back."

In October, we met with Dr. Schroeder, the oncologist at Rapid City Regional Hospital Cancer Center and he made a referral to Mayo Clinic, he had a page on his computer and it took only a couple of minutes.

Four weeks later, we were heading for Rochester and the Mayo Clinic.

Van losing at gin rummy.

On Friday morning we met the lung cancer specialist, Dr. Marks echoed the comments of our oncologist, Dr. Schroeder, I guess that is a good thing. The CT scan that was done on Thursday showed only a small increase in the tumor size. Dr. Marks said I had had a remarkably good response to the Pemetrexed chemo therapy, in the top 5% or better.  He echoed, again, Dr. Schroeder's concern about the Pemetrexed causing the pleural effusions.  Because of the genetic characteristics of my tumor, we are limited in how we can proceed, the only avenue being a check-point-inhibitor such as Ketruda. We had discussed the same option with Dr. Schroeder back in September.

In the afternoon, we met with a pulmonologist, Dr. Agripaldo. The testing that was done on Thursday indicated advanced COPD. She added several drugs to try to reduce the amount of coughing I was doing.  It was one of the most extensive history/work-up that I have received, she really drilled down on the cause of the coughing.  I was very impressed.

The cough has been so limiting, I cough a lot at times, just walking up a set of stairs is likely to set off a spasm of coughing and at times I cough so hard I gag and then vomit. It is so hard to go anywhere because of the coughing and pockets stuffed with barf bags.  So if we can reduce the coughing we might be able to get out and see the sights, do some traveling.

One good thing about the coughing, I have maintained my stomach muscle/core strength, yep, still pretty firm in the stomach, but with lack of exercise, have been losing strength in the extremities.

It has been a week since we returned.  I started taking all the medications that were prescribed and a couple of days later I began to feel that there was some improvement in my cough.  I suppose too early to be sure but it seems promising.  I am already thinking about traveling again.

One last comment, the Mayo Clinic is very impressive. The Gonda building, where I had all of my appointments, was built in 2002, is 19 stories tall and has 1.5 million square feet of space. Lots of windows, large waiting rooms, marble walls, leather furniture, fine art work, very comfortable. The staff is truly exceptional, everyone smiles and goes out of their way to help.  If you are ever at the Mayo Clinic, take a few minutes to look around, it is truly beautiful!

Thanks so much for the thoughts and prayers, we really appreciate all the love that we feel from all you all.

Love,

Van and Carol