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

Impossible to know

The week started out pretty normal, then took a detour that we didn't imagine.

For Father's Day, my daughter, Amy, gave me a “pulse oximeter”, that device they put on your finger in the doctor's office to check the level of oxygen in your blood. Through casual use we discovered that a trip up a set of stairs will lower my blood oxygen level into the 70's percentile. And resting it hovers between 86 and 92%. The readings suggest that I should be on oxygen.

On Monday morning we went to the Custer Clinic to qualify for home oxygen. Pretty simple procedure, walk down the hallway and sit and rest, while wearing the pulse oximeter. I easily qualified.

Our Doctor, Joy Falkenburg, met with us for a few minutes. She listened to my heart and lungs, and did a pretty extensive thumping. She told us that the right side lung was without breathing sounds, and was most likely not functioning or barely functioning. She ordered a chest x-ray.

After we got home we got the results of the x-ray electronically through the clinic/hospital portal (convenient thing, that). The x-ray showed what appeared to be fluid on the lungs. She suggested that the fluid on the lungs be further investigated when my regular CT was performed, which would have been later this month.

Home Health visited us at home on Monday afternoon and got me outfitted with an oxygen concentrator: a stationary unit and a portable unit.

Tuesday, was my regular chemotherapy day. My oncologist, Dr. Schroeder, was concerned enough with the x-ray that he rescheduled the chemo infusion for Wednesday morning and scheduled me for a CT scan that afternoon.

Wednesday morning, we met with Dr. Schroeder and looked at the CT scan. The scan showed that the cancer has remained stable for the last year, which is very good news and there is no sign of the cancer spreading, the Pemetrexid has been very effective. The scan showed a lot of scar tissue in the lungs, based on that he ordered an echo-cardiogram and pulmonary function test on Thursday morning. The chemotherapy was canceled.

It is impossible to know what was causing the scaring of the lungs. It could be a side effect of the Pemetrexid, it is a documented but extremely rare side effect. It could be an unknown “infection”: virus, bacteria, mold, autoimmune disease or some other disease. My blood tests show no sign of infection. The CT scan, back in May, showed this scaring pattern, it looks like pneumonia, so I was given a regimen of antibiotics just in case it was pneumonia.

So Thursday morning we once again drove 50 miles to Rapid City. I had a pulmonary function test first thing in the morning and the echo-cardiogram at 10:00 am. We met with Dr. Schroeder at 3:30 pm. He told us that the echo-cardiogram was read by Dr. D'Urso, the cardiologist who installed my stent. The echo-cardiogram showed a strong heart with a bit of fluid, not enough to worry about... so that was good. The pulmonary function test showed that my lungs have lost over half of their capacity in the last year, from 5.54 L in November 2016 to 2.45 L yesterday, which would explain the shortness of breath.

As Dr. Schroeder's concern is that this may be a side effect of the chemo drug Pemetrexid, for the time being, and perhaps for the future, chemotherapy has been canceled, at least the Pemetrexid anyway, until we know more. As it is impossible to know for sure what is going on, a limitation of science, it presents a bit of a puzzle.

Ideally, it would be good to be seen by a pulmonologist, except that they are in short supply in the western part of South Dakota currently. If an appointment could not be made in a couple of weeks a course of steroids would be started to reduce the amount of inflammation in my lungs. We talked about going back to National Jewish Health in Denver if necessary.

Got a call when we got home this afternoon, it was the Pulmonologist Office, they had an opening on Monday morning at 8:15 am. I am thinking that my oncologist has a bit of pull, thankful for that.

Have an appointment with Dr. Schroeder on Wednesday.

We are getting better about these sudden diversions on our path, but as you can see, they really screw up the schedule.

Overall, we have been dealing with things as they come up. Because of my breathing problems and nausea we tend to stay home a lot. We get out when we have to go to see the doctor... it is not really that bad, but close. Carol is doing OK but would really like to do some traveling if I was up for it and I haven't been. 

We really appreciate all the thoughts and prayers.  We have such great friends.

Love to all,

Van

One Year

I had my first chemotherapy a year ago today, 7 July 2017.  Picture at right.  BTW, that belly is gone, I have been losing about a pound a month since January 2017.

17 infusions so far, number 18 is next

Tuesday.

There has been no significant change in my tumor over the past year, either in size or density. So that is good, the pemetrexed has been effective. My blood-work has remained stable, also.

Statistically, I am doing well, the median survival rate after diagnosis of stage 4 lung cancer is less than 6 months and I have been going for about 15 months so far... so far, so good.

I have three major complications, the first is nausea, my nearly constant companion. My motto is: “have barf bag will travel.” I have barf bags all over the place: in the bedroom, living room, shop, crawlspace, car and carry one in my pocket whenever we are out of the house. In addition I carry a couple of dissolve-under-your-tongue anti-nausea pills (Zofran) in my pocket at all times. I take 5 to 10 of the sub-lingual tablets each cycle and so far I have just been dragging around the barf bags for security.  The nausea affects my appetite and is the cause of my weight loss.

The second complication is a reduction in lung capacity. My heart rate hovers between 100 and 120 bpm and my oxygen saturation is about 88 % at rest – my heart is working harder to compensate for the reduced lung capacity (due to surgery, radiation, and collapsed lobes).  I am totally out of breath from walking up a flight of stairs and have to sit down for 5 minutes to catch my breath. So I have chairs set up in the crawlspace and shop, so anywhere I end up I have a place to rest. I got a walker with big wheels so I have something to sit on when I get short of breath when we are out walking. I have a chronic cough that I have been nursing for the past 3 to 4 years – it is worse when I switch positions, like getting up in the morning, or standing after sitting, bending over, any exertion, and laughing also gets the cough going.  We are in the process of getting an oxygen machine, I am told, one of those that I can wear like a back pack. A slow process I am told, so patiently waiting.

And third, is fatigue. I wish I had more energy. Although sitting around does allow me to read as much as I have always wanted to. Recently I have been reading “For Whom the Bell Tolls” by Earnest Hemmingway.

I created a spread sheet to monitor my symptoms: nausea, heart rate, weight, blood oxygen %, constipation, etc and monitor my medications. I began to cut back on medications until I was experiencing symptoms and added a day. I reduced my medication by about half. I have been feeling much better so I think I was severely over medicated.

Carol and I were in Bismarck in April for a judo seminar.  I was coughing and hacking but I kept to a slow pace and was able to teach for about 5 hours.  The seminar is posted on youtube:  https://www.youtube.com/watch?v=rv8AeRaA0yc  After the seminar we met at a restaurant, several former students showed up to party with us.  Great seeing everyone.

We were in Fargo for Mother's Day week.  Spent a day with our daughter and two year old granddaughter, had lunch at Space Aliens and Sloane was having a great time pointing out the monsters to me, I laughed so hard.  Then we went to the zoo, it was a very hot day and we had a great time.  Mother's Day celebration was at my sister's house near Detroit Lakes, they have a pretty place with lots of trees and ponds and she puts on a good feed.  During the week I got to hang out with some of my former co-workers from the lab.  And on the way home put on a 2 hour judo seminar for the Rough Rider Judo Club in Dickinson.  Life is good.

We have been hanging out at home since then and enjoying it.  We have had a fair bit of rain reducing the risk of forest fires and contributing to the weed problem in the garden.  We have had some nice weather too.  Mark Strege and I built a stairway from the deck to the crawlspace level of the house, Mark cut the stringers and installed them, I got to help a little.  Carol and I installed the risers and treads between rain storms.  Sam Rudd was here this past week and helped me remake the deck railing, making an opening to the stairway and then we installed a railing - he did most of the work. I am so thankful for my friends.  The stairway makes it so much easier for me to get down to the hot tub and the crawlspace.

Our daughter Brittany, her husband Brady and 2 year old Sloane were here for 5 days the end of June.  Gamma Carol and I really enjoyed having a 2 year old bundle of joy running around the house.  Sloane is just beginning to talk and points and asks, "wassat" about everything.  We would ask her, "where is the kitty" and she would respond, "kitty outside" and would then add, "kitty go potty."  She was just adorable.  We were sad to see them go.

Sam Rudd stayed the first week of July.  Sam and I met in 1978 at the Judo Club at NDSU with Leigh English teaching and have been close friends since.  For the most part we just sat around and visited, I laughed so hard that my coughing got out of control a couple of times. 

On a day to day basis we are doing OK. We start out our days with coffee in the sky-chairs in the sun room or on the deck and talk about our kids. We get a couple of hours of chores/projects in before lunch. Then a nap after lunch. Supper at 6 pm. Watch the news and go to bed about 8 pm. 

Having cancer in the house creates a lot of stress.  We do our best to reduce the stress.  Carol and I are both firm believers in "laughing every day", we work at it.  We hope you do too.

Thanks for all of your thoughts and prayers.

Love to all,

Vern