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.