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

Teaching judo in Sioux Falls, SD

I made arrangements with Brad Walker, the head instructor at the Dakota Budokan to conduct a judo seminar on Tuesday evening, on the trip to Rochester.  The Dakota Budokan is in Sioux Falls, SD. 

It was not a regular practice night for judo and it was really heartening to see 14 adults on the mat. Brad sensei warmed up his students and went through an impressive sequence of falling drills... his students, from yellow-belt on up, had very respectable falling skills.  I spent 45 minutes teaching a throwing drill from the Zen Judo syllabus. I spent the second hour teaching half a dozen throwing techniques.

I set a folding chair next to the mat with my oxygen machine at the ready and after each teaching segment I would sit down and hook myself up. From the seated position I could see the entire mat and would call over students so I could make adjustments to their movement patterns.

While the short teaching sequences followed by longer times sitting worked well, I found that this evening I was extremely short of breath, more so than my previous seminar in Bismarck in September (Judo is a great gauge of my physical health because I have been doing it for so long that I know what my energy expenditure should be... and I am getting weaker and my breathing worse.)

I want to thank the people at Dakota Budokan for their incredible hospitality and their eagerness to learn. It was a great pleasure working with them.  Brad sensei, it was a pleasure meeting you and I hope that we can get together again soon.

In judo,

Vern

The traveling cat

I got a cat for Christmas, Kristen and Gabe decided that I needed a cat to snuggle with, so when they visited us at Christmas, they brought an orange cat with them as my Christmas gift.  They got him at a shelter, he was about 2 years old. 

We named him Obi, which means belt in Japanese.  So he is an orange belt.  I had a cat in Fargo who was also named Obi, he was black.

Obi is a great cat, he likes sitting on my lap, which is a great comfort when I am not feeling well, and he follows me around like a dog.

In the past, when we would go to Fargo, we would leave Obi at home - we would set out food and water for a week and leave.  When we come home he met us at the door and tells us in no uncertain terms that he is mad that we left him for the week.  And then he is mad for a couple of days.

We always worried about him being home alone, so we decided that we would take Obi with us on our trip to Rochester to see how he traveled.  We found out that he travels well.  He doesn't  like being in the kennel in the car but when we let him out he was OK, he would settle on the armrest between the front seats. 

We didn't have any problems making reservations at hotels, we found out that there are a lot of pet-friendly accommodations.  Once we would get to the room, Obi would explore for a bit, look out the window and then find a place to lay down.  He didn't fuss, we think he was just happy to be with us.

As he is such a good traveler we will be taking him with us more often in the future.

A short reprieve

We have had a reprieve from the chemotherapy blues for the past month.  My last chemo was 7 weeks ago today.  After 4 weeks without chemo, I started feeling a lot better and the incredible fatigue was replaced with a new energy, I was actually dancing around, judo walking and laughing.  Carol remarked, “I got my husband back.”  

“Chemo brain,” is a term used by cancer patients and medical staff to explain the effects of chemo on the brain.  It is also called the chemo shuffle.  After you start chemo you become aware of the fatigue that hits the body and you know it is affecting the brain but the onset is so slow it is hard to gauge the total effect.  But after you quit chemo and “normal brain” function returns, in a week or so, the contrast is readily apparent.  For me, mentally I quit planning, making notes and sketching and now those things are back.  

Creativity, most days, was just not there.

It was so hard to plan anything; we had no idea how I was going to feel from day to day.  One day I would feel good and the next I would be sicker than a dog.  We didn’t feel that we could go anywhere.

So we have been taking advantage of “my new wellness and energy”, a week ago we took a mini-vacation to Yellowstone National Park.  We had a great time, got to see Old Faithful, first time for me.  But I missed seeing the Grand Teton’s again, for the 3^rd time, there were clouds to the ground… one of these days I hope to see them.

My lung problems make for difficulty moving around and we avoid going up steps or slopes.  I have a portable oxygen machine that makes a lot of difference, I put it in a backpack and I can stroll along pretty well on flat ground.  One drawback, the battery only lasts for 4 hours… I need an extra battery.

I have been working around the house, building stuff, drawing sketches, making plans.  Fun to be out in the shop again, actually working!  I got a helmet powered full-face respirator to filter the air so I can make up a batch of man glitter (saw dust).  The helmet makes me look a little like Darth Vader, but best of all it fits over the oxygen hoses.

My oncologist has suspended any further chemotherapy until we can figure out what is going on with my lungs, there has been increased scarring of the lungs, called pleural effusion, over the past two years, resulting in a decrease in lung capacity by more than 50%.  I saw a pulmonologist; he put me on a steroid to reduce inflammation and a COPD inhaler.  Finished the steroids, have a pulmonary function test and visit the pulmonologist this Wednesday.  Appointment with the oncologist on the 28^th of this month.

Not sure what the future holds, Carol and I have been talking about getting a referral to either the Mayo Clinic or Cancer Centers of America for a consult, perhaps that would be in October.  Being larger cancer centers would allow them to prescribe chemotherapies that our local oncologist cannot prescribe.  (Medicare is more likely to pay for newer/experimental treatments prescribed by major research centers that have large cohorts.)

After I got the diagnosis of cancer, Carol told me to avoid looking up sh*t about cancer on the internet.  (Use of swear words, they say, is a mark of intelligence.)  Lung cancer prognosis is pretty bleak, usually less than 6 months and she was concerned that it would be too depressing; my cancer has been stable for 17 months.  I was a good husband and took her advice until recently.  I have started doing some research on alternative chemotherapies… seeing what is available.  There are a dozen or so targeted chemotherapy drugs that are relatively new and a few cocktails (multiple drugs) that seem to hold some promise.  There were some accounts of patients with lung cancer that have been living with their cancers for 10 years, so there is hope.

Thank you all for yor continued support, prayers and love. 

Love, Van