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

It rained today - 18 June 2018

Monday morning – 18 June 2018

This morning, slightly before 6 a.m. Carol let the cat out. Quite literally, a few minutes later it started to rain and the cat wanted back in. Not satisfied with being in, he wanted back out again. After waiting at the door for the cat to decide whether he wanted to be in or out, she closed the door with the cat inside.

I came into the great room about 45 minutes later and the cat came up to me and rubbed my legs as he typically does, then plopped over on his side, exposed his stomach and when I went to pet him, he bolted a couple of feet and plopped down again... I tried to pet him again and once again, he bolted. I commented to Carol, “Obi is pretty wired.” Carol said, “he is frustrated with the rain.”

I decided to open the sliding door and let him out... and out he dashed into the rain and back he came under the eaves, jumped to the window ledge (we have a continuous window ledge that runs the length of the house) and came to the edge of the sliding door like he wanted to come in. I reached out to pet him and he snapped at me, as if to say, “MAKE THE DAMN RAIN STOP!” I left the sliding door ajar and over the next 20 minutes he was in and out a dozen times. It was getting cold next to the door so the next time he was in I closed the door.

It was somewhat pleasant on the lee side of the roof drip line as we had just had half round copper gutters installed over the deck. The discharge of the gutters is directed by a lotus flower shaped rain chain that Carol found on the internet. I found it interesting that the water draining from the bowl would swirl like the water swirls when you drain the bathtub and the discharge would hit the next cup below and cause it to move to the side and it would do the same and soon there was a circular vibration to the rain chain, of maybe 3/4” or so. It is kind of like watching fire.

By the end of the day we had 2.25 inches of rain over a 48 hour period.  The rain is welcome, it had been getting a bit dry here.

 

Cancer update - 15 February 2018

Many people have asked for an update on my condition, so here goes. Today is Thursday, February 15^th, my last chemotherapy was Tuesday, February 6^th.

I get chemotherapy every 21 days. That period can roughly be divided in half, the first 10 days is dealing with the effects of the chemotherapy drug: the nausea, the fatigue, etc. The nausea and fatigue fade away after a week to 10 days and I have another 10 days where I feel pretty good. During the first week, I am not much interested in being actively engaged, let me sit on the couch and read a book, or go to the crawlspace to sort through old junk while listening to music; its really a lot of sitting time. The second 10 days are much better, I get some energy and Carol and I can get out of the house and do something or on those days we are home I do chores or work on a project.

I have a chronic cough. I am functioning with one lung, the other has collapsed.

I am still limited in my energy level. This has been the most difficult thing for me to accept, I was an active person, an athlete, a gardener, I could pick up a shovel and dig in the dirt all day long. Now I am happy to carry a 2x4 for 50 feet, then rest. I arrange to have a chair placed close to my effort, so I can rest every 10 minutes or so. I am a project guy so it really sucks. Carol keeps reminding me that it is the new normal.

Since the middle of November I have had chronic shoulder pain, at times inducing nausea and vomiting. At first we thought it might be related to minor surgery to install a power port (a permanently installed IV), the pain started two days after the surgery. I treated it with ice at first, then heat, then massage, then exercise and nothing would relieve the pain. I tried opioids, and that wasn't satisfactory, I didn't like the way I felt. Finally, last week I went to an acupuncturist for treatment, she said the vagus nerve goes through that spot in the shoulder and was likely irritated because of a sensitive stomach, the chemotherapy agent I am receiving attacks the stomach and other parts of the alimentary canal - that all seems pretty logical.  There is no significant change in the shoulder pain since the acupuncture treatment but I am hoping that the farther I get away from the last chemotherapy treatment, perhaps the inflammation will subside a bit and the cycle will be broken. I have my fingers crossed.

Prior to Christmas I had been to the emergency room on a couple of occasions for nausea/vomiting that was uncontrollable. Our daughter Amy, a medical student, thought I was getting psychotic, did some research and discovered that I have a super power, I can reverse the effects of a popular anti-nausea drug. It happens rarely, but often enough to be documented where-in some people can reverse the effects of the drug I was prescribed, an allergic reaction. Amy went with me to see my chemotherapy physician and helped me present the case. He made changes in my anti-nausea drugs and I am feeling much better. One of the new drugs I am taking affects my balance, and Carol, right away said, “no driving for you while you are taking that drug”, which I take during the first week after chemo.

The threat of the flu and my compromised immune system have kept us at home a lot. When we go out Carol is constantly looking for sick people, she has masks in her purse and sanitizing liquid. On several occasions we have packed up and left – no taking chances.

My lungs have difficulty dealing with temperatures less than about 45 F, and this winter has been a chilly one. We had a nice day yesterday, sunshine and warmer temperatures – I taught Carol how to plow our parking space with the Kubota tractor – her first time plowing snow – she did a great job. I grabbed the snow shovel and moved a little snow (about 5 minutes worth before I ran out of energy)... it was nice getting outside for a short spell. We are looking forward to the warmer temperatures as spring descends upon us.

We get up most mornings, start a fire in the fireplace, sit down and have a cup of coffee, we visit about our kids and our relationship and the comedy side show taking place in our Capitol. There is plenty of laughter.

I almost forgot, we have a new resident at our house, an orange tabby, about two years old, from a shelter in Fargo, a Christmas present from Kristen and Gabe. He is a snuggly guy and spends hours on my lap.

We try to get out a couple of times a week, close to home the first 10 days after chemo, and farther from home during the 10 days before the next chemo. We had a warm day a couple of weeks ago and drove to Spearfish, at the north end of the Black Hills, met friends for lunch, I went downhill skiing, 5 times down the beginner's slope, it wasn't much but it felt great to get some exercise and fresh air. As the weather gets better we will venture further away. Still on our agenda are drug trials, still hoping for a cure!

Our neighbors have been wonderful. We got home from Fargo a week ago, the day before my last chemo, it snowed while we were gone, and the neighbors moved the snow. It snowed again last week, it was my down week and the neighbors were again moving snow. We have such wonderful friends and they are taking such good care of us.

Carol is a great caregiver. I asked her how she is doing and she said she is doing OK, a little bored but happy that we live in such a lovely place. She likes travel, so she is looking forward to some nicer weather when we can move around more easily.

I want to thank all of you for keeping us in your hearts. We are truly blessed to have such great friends.

Love to all,

Van

Our trip to Japan

For the last couple of years Carol and I have been talking about taking a trip to Japan, I lived there for 5 ½ years while serving in the Army.

I started studying Judo after I returned to the United States and wanted to return to Japan, to pay my respects to Jigoro Kano at the Kodokan, the birthplace of judo.

We would have returned this week.

We booked passage from Vancouver on one of those luxury cruise ships. We would have left Vancouver on the 7^th of September. There would be a stop in Dutch Harbor, Alaska. We might see whales and icebergs calving and Russia for sure. Our final destination was Otaku, in the northern island of Hokkaido.

We would spend 2 days exploring the island prefecture of Hokkaido. We found a couple of interesting accommodations in the guide book. Hokkaido is known for its natural beauty and is the site of several National Parks.

We would travel by local trains through the rural north of the big island of Honshu stopping off to enjoy the typical tourist traps.

Next was Tokyo for a week. Planned were several visits to the Kodokan. Shopping for a nice/new judo gi. Shopping for new yukata. Shopping in a brush store. Taking some lessons in shodo, Japanese calligraphy. Visiting temples and historic areas and museums. And of course many of our destinations were about the food. We had rented a VRBO in Kawasaki.

Next was Osaka, it was going to be more of a central hub for us to explore the Japanese communities accessible by train, so a lot of area, temples, castles, gardens, shopping for kitchen items and of course restaurants.

“Sukiya Living”, is a magazine about Japanese residential gardens, how to build them, and how to maintain them. They sponsor two 10 day garden tours in Kyoto. We signed up for the fall tour. It is truly an experience of excess, you get to see some of the best examples of Japanese Gardens, the food is over the top, there is tea ceremony and other cultural activities.

I was studying Japanese 2 hours a day, hoping to have some interesting conversations.

Damn, it was going to be an awesome trip!

Mixed bag!

After chemo last week, no. 5, Carol and I took off on a road trip to New Mexico. We were to meet her sisters, the McGuire sisters, in Santa Fe for 4 days over the balloon festival. We picked a beautiful time of the year to travel, the leaves were changing color and the colors were so rich.

We discovered that by driving down the eastern side of Colorado we could miss the traffic of the Fort Collins, Denver and Colorado Springs corridor. We drove down highway 71 and saw maybe one car per mile. Much nicer than all that traffic!!! Although, there was a constant fight with the GPS lady, she must be paid by the Interstate system, as she was constantly trying to redirect us to the Interstate. But we managed to fight her off.

On our arrival in Albuquerque we had drinks with Linda and Andrew Yianakkis. Carol was a good sport and listened while we talked mostly about martial arts history and culture. It must have been a good discussion as 2 ½ hours went by in the blink of an eye. Great seeing you guys again.

The next morning I woke up with a very upset stomach. I wasn't supposed to get nausea from the Pemitrexid! I spent Thursday in bed, Friday and Saturday also. The girls had a great time eating out at all of their favorite places (El Pinto, La Fonda, Tomacita's), shopping and seeing the sights. Saturday morning they got up early and went out and watched the balloon festival, I relocated to the couch and watched the balloons on TV.

Sunday I felt better, but also felt like I had caught a cold. I had been so ill, that I had a hard time sorting out the symptoms, beyond upset stomach. I was coughing a lot in the morning and having a hard time catching my breath after taking a shower. Carol was constantly checking my temperature, it was above normal, but did not meet the requirements to head to the emergency room.

We checked out of the condo on Sunday morning and headed for Colorado, our goal was to look at some mining and railroad history. We stopped in Chama for lunch, Carol had some Mexican food, said it was the best of the trip. I had a hamburger. We spent the night in Durango.

I was up most of the night coughing so was not interested in taking a train ride the next morning, “the Durango-Silverton Railroad” has an all day trip through the mountains – been on my bucket list for many years. The front at the hotel told us not to wear white as you will come back gray from smoke... good thing we didn't make it to “all aboard”, my lungs wouldn't have made it.

We hung around for a while and toured the train museum and then decided to head for Cripple Creek another mining town and the site of the Molly Kathleen Mine. On the way we got caught in a snowstorm, there was about 4 inches of snow. As we came through the pass we came across tractor trailers jack knifed in the road, cars in the ditch, a horse trailer on it's side, it was a mess. We had a lane through the mess, the road way was slippery, everyone was going 5 miles an hour when they were moving, it took us the better part of two hours to move 5 miles.

We decided to give the highway department some time to clean the roads, we stopped in Salida for the night.

The following morning we woke up to chilly, bright sunshiny day. We continued our trip to Cripple Creek. We stopped first at the Molly Kathleen Mine and rode the skip 1,000 feet down into the mine and spent an hour walking through the mine with a guide. Fascinating slice of history! We were surprised when the guide told us that the mine was the number 3 attraction in Colorado. Then we looked around the Heritage Center and got another big slice of history from the area.

From there we drove to Leadville for some more history. We stayed in an old hotel, recently refurbished, in the down town area. Lot of antiques. The museum that we wanted to see was closed. It was getting late in the season and a lot of places were closed. As I was still feeling a bit under the weather we decided to call it quits and head for home. We angled for our new favorite highway, #71, through Colorado and by late evening we were home.

Home, sweet, home.

Chemo #3

I didn't sleep well on Sunday night, Monday morning. I know it was the anticipation of another round of chemo. I slept fitfully. I didn't dwell on the chemo itself, I thought of judo all night long.

We got on the road about 9:00 am for the trip into Rapid City. I had a bottle of Mocha Smoothie Barium something or another that I was supposed to drink at 9:40 am for a CT scan at 10:40 am. I had previously tried the vanilla flavored one, which was awful, the Mocha was better but only marginally so. It took me about 10 minutes to swallow about a pint of the thick liquid. We got to the hospital, got checked in, and escorted to the Imagining Waiting Room, and shortly thereafter shunted into the CT. They got the line installed in one wrist, laid down and the scan began, it takes only about 20 minutes for the entire procedure.

Then we had some time before a blood draw was to be taken so we went out in the parking lot and checked out the solar eclipse with a pair of paper plates with a pin hole in one... it was about 10;15 and there was about 25% of the sun in eclipse. We drove to lunch at Arby's and after that did some shopping at the drugstore. As we were coming out of the store a nice SUV pulled up, window down, a young woman, mid 30s was waving a pair of solar glasses, saying, “Have you seen the eclipse? Do you have a pair of glasses? You don't, then you really need to see the eclipse through these glasses.” So we borrowed her glasses and looked at the sun, then I showed her my two plates and she was pretty impressed. It was a short, pleasant meeting in the parking lot with a complete stranger.

We returned to the hospital parking lot, it was about 11:30 am and there were a lot of people milling around in the parking lot, obviously enjoyed the spectacle of the eclipse. Our 97% eclipse was due at 11:50 am. As I was standing outside the car with my paper plates we were approached by a couple of guys and they struck up a conversation. They were taken with the paper plate method of viewing the eclipse. Then a guy came over with a welding helmet that he shared with everyone in our small group. Then a women came by with a pair of glasses that she gleefully passed around the now small group of people standing there. It was so nice to see that everyone was exited about the science of celestial movements.

The eclipse came and slowly started its decline. We were drawn back into the Cancer Center for laboratory work, a visit with the doctor and my third infusion.

The doctor's visit went well. The laboratory tests were good. The CT scan showed that my tumor had either remained the same size or was shrinking slightly, anyway both of those were good news. After today's infusion there will be one more infusion with the Carbo Platin drug and then after that I will be receiving only one chemotherapy drug, Prematrexid as a maintenance drug, again every 21 days for the next 2 to 3 years.

After the first infusion I got pretty sick on the 3^rd and 4^th days. It really feels like a bad hangover, except that I missed the fun part the night before. I got out of bed but didn't get off the couch all day. They had given me a schedule for taking an anti-nausea drug, two a day for 6 days. The pharmacist advised me when I picked up the drug to “stay ahead of it.” We drove on the 5^th day to Pierre, SD and spent the night, if I felt better on Thursday we would drive to Fargo for my 50^th year class reunion... we made it to the class reunion.

For the 2^nd infusion the doctor modified the anti-nausea drug regime to 4 pills a day and I felt much better, not 100% but maybe 90%, I was able to read a book and felt like getting up and moving around. The “hangover” is still there but it is a lighter one. The hangover, with pills or not, starts tapering off after a couple of days and lasts about a week. Then I feel pretty good for about two weeks.

Third infusion was nothing different than the previous two.

I am still dealing with the new normal... coughing, especially when talking, laughing, getting excited or changing positions, like from sitting to laying. I am short of breath, walking 5 miles seems like a distant dream, I can barely walk up the hill from the underside of the deck. I did go rock climbing but had to hang on the rope after 20 feet of climbing to catch my breath and again at the top of the rock. New normal sucks but not much I can do about it.

We bought a used riding lawnmower so Carol can mow the lawn easily. It is too dusty for me to cut the grass and I have to wear a mask if I am going to do any gardening.

But not going to complain too much, the alternative is much worse.

All you all take care of yourselves.

Love,

Van