Celebration of Life. Gone but Forever Loved and Missed.

Barend Hendrik Steenhuis

Thank you for reaching out with kind words, letters, flowers, and attention with the passing of my dear husband, our father, and grandfather.  Your presence and support at the celebration of life and during the past 15 months of his illness are appreciated. 

Heel veel dank voor alle belangstelling, bloemen, brieven en steun bij het afscheid van mijn man, onze vader, en Opa. Uw aanwezigheid, aandacht, en visites tijdens de 15 maanden van zijn ziekte en bij de afscheid bijeenkomst is veel gewaardeerd.

Bonnie L. Steenhuis-Sweeny                 

20316 Driftwood Drive           

Oregon City, OR 97045

Jacqueline Steenhuis  and Sara Steenhuis-Bickel

Naomi, Julia, Alexandra, Emmett, and Kellan

Adam and Josh

Celebration of a Life Well Lived

On the shores of Beaver Lake

Dear Family, Friends, Facebook Friends and Blog followers,

As you know, Barend Steenhuis recently passed away after a 15 month battle with lung cancer.  During that time his family was at his side and many of you visited our home on Beaver Lake.  We loved all those visits and had hoped to have many more this summer and fall.  You came from far away and farther away because we had travelled the world together making friends.

It started when Barend attended Nijenrode and came to the University of Oregon for an exchange program.  After the school year was completed, he stayed on to earn his MBA and then married Bonnie Sweeny.  Jacqueline was born before they returned to The Netherlands where the family was excited to welcome a new daughter and sister Sara-Lynn a few years later.

During his life Barend lived and worked in Holland, Belgium, Sweden and the east coast of the US before finding his retirement paradise in Oregon.  He also travelled the world for his job and, in fact, the only continent he had not visited was Antarctica.  Along the way, his ready smile, the glint in his eye and the always positive and playful attitude made him many friends.

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Barend Hendrik Steenhuis

Born January 31^st 1947, Groningen, The Netherlands

Died July 17^th 2014, Oregon City Oregon

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The cremation took place on Monday July 21^st without ceremony.  Barend believed that the gatherings on these occasions are for the living and should be a support for those who, of necessity, remain behind.  He wanted a party to celebrate his life as he celebrated every day he lived.

We would like to invite all of his friends, family and colleagues, who might be able to take part, to a celebration of Barend’s life.  His favorite place became his home on Beaver Lake which makes it the perfect location.

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Beaver Lake Estates

Oregon City, Oregon

September 13th 2014

1:00 pm – 4:00pm

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Between 2:00pm and 3:00pm there will be an opportunity to speak for anyone who would like to share a memory of Barend with the gathering.

We realize that the time and expense to travel to this gathering would be prohibitive for many of you.   If you would like to send a text document, email or card with your remembrance, they all will be placed in an album for viewing during the gathering.

Please RSVP by August 30, 2014

 

Bonnie L. Steenhuis-Sweeny, Jacqueline Steenhuis, Sara-Lynn Steenhuis Bickel.

Adam Whiting           Joshua Bickel

Grandchildren:    Naomi, Julia, Alexandra, Emmett and Kellan

 Email:  celebrate.barend@gmail.com

20316 Driftwood Drive

Oregon City, OR  97045-7339

 

 

 

Goodbyes are not forever, it simply means I'll miss you until I see you again

On Wednesday Opa passed away.  In some ways this was very unexpected as we had always been told it would be a gradual decline, not falling off a cliff and yet this was a steep cliff.  On Sunday Opa had a some trouble breathing after walking up the stairs and he headed to the emergency room.  He was given some oxygen and quickly felt better.  The x-rays indicated pneumonia so he was admitted into the hospital.  We thought he would be out by Tuesday. 
On Monday we visited and joked around and Papa was in great spirits. Overnight things changed pretty quickly and he had to be sedated to keep additional breathing equipment on.  From there the decline was quick.  We're sorry for not updating people more through out this process but none of us expected this initially.  Once we realized we were somewhat in shock and focused on getting through the final hours.  His last day was peaceful and surrounded by his family.  We had beers and nuts at 4pm like any other day we visited.  Lots of memories were shared and we played some of his favorite music.  I'm sure some people wondered why Julio Iglesias was playing in the critical care unit. 

Although of course I wished this day was years in the future, there were so many blessings.  It was clear he never wanted to be dependent on others.  All his grand children were sleeping over the night before and in the morning they were all eating pancakes with muisjes (special dutch toppings).  He even taught Kellan how to roll his up to minimize the loss of muisjes.   He felt great and was happy.

Over the last couple of days we've gotten so many great messages about our Dad and what he meant to people.  Of course we always thought he was a great man but I'm proud that he made a difference in so many other people's lives. 

We miss you terribly Opa but I have no doubt you're entertaining crowds in the next world.

We will update the blog with information on the service as well as updates on the family so please stay tuned. 

Lyrical Chemistry

I woke up today at first light to one of these incredible West Coast Summer days. The cold of night still in the air, dew on the grass, steam lazily coming off the perfectly mirrored lake surface. A doe and her two little fawns happily hopping around their mom, the birds singing, woodpeckers doing the rhythm sections, and you have the first scene out of Walt Disney's Bambi movie. You could nearly hear the romantic mandolin music in the background.  Now picture yourself in that scene with freshly brewed coffee, and you have to agree that it can hardly be more perfect than this. After taking this in for at least half an hour I turn on the television news and watch with amazement the politicians making each other's life miserable. Boy, did they get it wrong! The reason for this lyrical and cliched outburst, and I promise I will never do this again, is simply to show how incredibly good life can be even for people who have a little better insight in their time line, or rather the end thereof. Of course all of this would be meaningless if we did not get to share this corner of paradise with friends and family of whom so many have visited us. We indeed consider ourselves fortunate. What may be most important is the humor friends and family bring. We laugh a lot and the morbid humor is getting to an exceptionally good level. Keep it coming!

It was hardly a surprise when the decision to change from immunotherapy drugs to a  more traditional chemotherapy in pill form was confirmed two weeks ago. To process the fact that this also confirmed there will not be a cure or significant extension of life did not take more than two gulps of air, and 3 minutes later we were onto more important subjects, like where to have cocktails. The tumors in the right pelvis have slowed me down and I walk with a limp, but that may end soon. In the last blog I speculated about getting radiation and guess what: we had the MRI, seen the radiologist, got measured for the cast, had 5  treatments, got my diploma and big hugs from all 5 cute technologists. I hope the testosterone on my chest did not rub off on them, else the technologists may now sport mustaches and speak in deep baritone voices.

Bonnie and I enjoyed the continuation of the World Cup with Holland still in the race. What excitement! We watched the unfortunate disintegration of the Brazil team against the Germans, Holland going from trailing Mexico by 1 goal to scoring twice in the last 6 minutes. The games were surprising and we were watching history being made. We were thrilled by how cool and composed the Dutch Team took their PK's against Costa Rica and how that sly fox Van Gaal changed his goalie in the last minute before the end of the game, and had to watch in total agony how Vlaar took a 30 yard run like a Sunday Morning Amateur to shoot right in the hands of the Argentinian goal keeper. This last loss was NOT my fault. I had to do a CT scan right in the middle of this game and as you can see I kept my orange hat on! No Compromises! The hat tested tumor free and is ready for the next world cup in Russia. Sara and her kids watched the game at our house, which was a nice bonus for the grandparents, but our grandkids may not yet have the same appreciation for the game. We are working on that.

A Holland Fan through thick and thin.

We had a busy schedule of visits to oncologists, radiologists, blood draws for lab testing, CT scan and there was barely a day without some kind of medical event. Of the few times I visited medical providers in the Philadelphia area, I cannot remember one visit where the consult actually started on the appointed time. Not so in the Providence Medical Network, because that organization runs like clockwork, and a medical appointment leaves time to do other things on our busy schedule.

Terry and Fernanda at Stonecliff Inn

In between all the medical professionals we had a visit from Terry, our finance manager from Merrill Lynch, who traveled from his home in Florida, diagonally across the United States to Oregon. You can hardly fly further without leaving the contiguous 49 states. We consider Terry a good friend and we have known him for a very long time, and were pleased that he brought his girlfriend along for a 4th of July weekend in Oregon.
Since he is helping us make lots of money, he is also of  course in the column of professional contacts but it is so much nicer to work together in a friendly atmosphere with complete trust. Bonnie, Terry and I had a real old-fashioned (for me at least) meeting with a real agenda, and then all of us managed to do a delicious lunch at the Stone Cliff Inn without talking shop during the meal. Now that is real friendship.

Harry is ready for a nap!

You of course always hope to get some hot tips from your finance advisor, and Terry indeed came through in a big way when he gave us the name of a fish restaurant on the banks of the Columbia river close to the airport. It so happened that yesterday Pat and Harry had a 7 hour lay-over in Portland on their grueling journey from Philadelphia to Alaska.  We picked them up at Portland airport. What a delight and what opportunity to catch up with friends. By the time they came to Portland they were already 12 hours into the journey but the conversations were lively and we dined on freshly caught salmon that must have been alive that morning. Add some Oregon wines and there was ample material to keep Pat and Harry awake.

Back to the plane.

The Clinical Trial is perhaps not the cure for me.

Last week we went to the clinic for our biweekly infusion and to consult with our oncologist. The clinical trial drugs are clearly not working for us, and we will need to change to a different kind of drug. That would most likely be a pill based chemotherapy called Tarceva, which will be used to help control the growth of cancer but which cannot shrink the tumors, at least not the kind of tumors I have. It is of course a bummer that this effectively rules out a cure or, at minimum, a substantial extension of life. The new drug will also have more side effects than those of the clinical trial, but it may, hopefully, allow radiation on my right hip. The bone cancer in the left hip was treated with radiation and I hope to receive similar results on the right hip.  So there are definitely upsides as well. Maybe, and I really hope so, I can perhaps stop taking morphine and get my driving privileges back. Due to the opioids, Bonnie has to drive me around town because  a couple minutes disappear from my life here or there and if that happens in busy traffic that could of course lead to a big mess. We are only two weeks away from the regular 8 week CT scan and perhaps the Oncologist wants to await that test before changing drugs. Meanwhile she ordered additional blood tests to measure testosterone and other hormones. The oncologist also ordered two MRI's which we did on Sunday. One of the brain and one of the hip, and doing those in one session turned out to be a bad idea. I don't mind being in an incredible noisy tunnel for over two hours but being stretched out on a very uncomfortable platform and not being able to move a painful hip for the entire time was not an experience to be repeated. And we may have to do exactly that. The discomfort led to involuntary muscle movements and the pictures may be fuzzy.

While I was updating this blog, the Oncologist called to share the results of the tests. The MRI’s, it turned out, were readable and can be used. There are no lesions in the brain, which is excellent news, but the bone cancer in the hip is growing and an intervention will be necessary. An appointment with the radiologist has already been made for Friday, which shows again that if you do get sick, do it in the USA with good insurance.  All hormone levels were extremely low, and totally out of range, which probably means that the clinical trial drugs have shut down the pituitary gland, or hypothalamus (hypofyse in Dutch),  which is the gland that orchestrates  the Thymus and other glands to produce the right hormones. Without testosterone, it is no wonder that I am losing my butt and other muscle mass faster than snow in the desert.  Watch out Ladies. A generous supply of Testosterone replacement is on its way, as well as steroids and other drugs to reverse that situation, and I hope to be gaining back some of the weight I lost.

One of Jan's little projects in Mortsel Belgium

That was perhaps a little too much whining.  There is enough to enjoy in life: Jan, our good and lifelong friend from Belgium and former colleague decided to come and see us in Oregon. Jan is probably the most creative entrepreneur in all of Belgium and certainly the most creative entrepreneur I know. I am always surprised how he comes up with new money making schemes ranging from fast moving consumer goods, TV entertainment, rebuilding a castle into retirement units, or renting apartments and student rooms, just to mention a few. It was an absolute pleasure to hear all the new ventures.

Jan in the snow at Mt Hood

Jan's brother died of cancer and it was also helpful to talk about some of the experiences he has had. We were able to see Portland and the nature surrounding the city. Just a few days before our Grandkids were floating in the lake, Jan and I were having lunch in the snow on top of Mt Hood, which is
just one hour away from our house. We were able to verify that it is entirely possible to ski in the morning and swim in the afternoon, should any of you need an incentive to visit us in Oregon. Jan, with his 7 ft length, was able to fold himself into the driver seat of the Sisi truck, and that is how we meandered through Oregon in about as much comfort a shrunken Sherman tank.

The travel agency made a mistake in Jan’s booking and his flight actually left a day earlier than we thought. A good thing his daughter discovered that and it was a blessing in disguise because Jan missed a very depressive play in downtown Portland

The grandkids decided that it was time for a camping trip and Camp Oma and Opa was selected for this purpose. This made for a fun weekend for everyone. Nearly everyone. I found Sara early in the morning curled up in a blanket in the library after she was pushed off the air mattress during the night. Fortunately the sun rises early at this time of year and by the time the grandkids woke up, it was a pleasant summer day.

Break between games

The World Cup is a blessing for the oldies with limited mobility. Oregon is the ideal place to live: at 9 AM we have the first match, the second match starts at 12:00 and a third match is at 3 PM Then there is ample time for celebrations from 5 PM onwards. Holland performed unexpectedly well, and in the festive environment you can find Bonnie and I early in the morning dressed in orange, shouting loudly to cheer on the Dutch team. We have appropriate colors for USA and Belgium as well. We root for Colombia but do not have the right shirts. I have a Mexican shirt but cannot possibly wear that because they play Holland next.

The second Dutch game was exactly at the time of the oncologist appointment and I had to call on the support team since there is no television in the fusion room. So the grandkids followed the game at their parents’ house and sent instant messages every time the score changed.

Sara received paddleboards as an early birthday present and she agreed to leave them at the lake house. We have new toys for the lake! Come on over and enjoy the fun and games.

Beaver Defense Wins over Immune Defense in This Round

It is time for another update on the status of the Opa in the title role.  We had another scan on the 16th of May and eagerly awaited results at the oncologist visit on Wednesday last.  The bottom line is that the bad news isn't necessarily bad and could, in the end, be good news.  There are a few spots of cancer that have flared up and become visible on the scans.  This seems to be as frequent an occurrence with this treatment as the extreme reduction in tumor is for another group of patients.  We have opted to do the second cycle before abandoning the hope we have invested in this treatment.

We have in the meantime passed the one year mark since the diagnosis in April 2013.  Given the initial prognosis this was cause for celebration though on a small scale.  No drinks and no gourmet meals since appetite reduction is one of the side effects of the immunotherapy protocol.

Early this month we had another visit from Tammo and Aafke.  Tammo assisted with eating the home baked cookies to energize the beaver defense system expansion.  We were alerted to increased beaver activity in the recent past and it was time to protect all of the remaining trees and shrubs from the lake inhabitants.

Team Alpha at DEFCON 1

While Tammo and Aafke were visiting they celebrated their 44th wedding anniversary.  They treated us to a wonderful dinner which allowed us to check off one more restaurant, Veritable Quandary, from our bucket list.

This time it was a very short visit but we hope they will return soon to complete further projects in our little paradise.

A week later, the day I had oral surgery, Jacqueline arrived with Julia for a long weekend.  This was a stroke of luck because the oral surgery caused more swelling than expected and along with that more pain than I could deal with easily.  I took to my bed with pain medications and Jacqueline took over the cooking and driving until I dropped them at the airport on Sunday.  This allowed me to recover in great comfort though I missed a good visit with Julia.  She had a sleepover at Sara's home so the cousins and sisters could catch up once again.

                               

We are beginning to have summer days interspersed with cooler rainy ones to keep the environs lush and green.  The lake is already beginning to warm up and some of the residents have been swimming and boating though we have not yet tested the waters.   

Soon our European visitors will begin arriving and the grandchildren will be finishing the school year once again.  We are looking forward to a warm and sociable summer as we continue to enjoy our little patch of paradise.

Pietje

After a short batlle with cancer, our good buddy and BFF Pieter van Wissen passed away on Monday, only days after his 67^th birthday. Pietje is one of the original good guys and I wish we could have enjoyed his company a little longer. 

Op een mooie herfstdag in 1968 in Eugene Oregon stapte Pietje uit de bus. Zomaar. Alle andere Nederlanders in Eugene waren via Nyenrode gekomen, maar Pieter had toegang tot de universiteit heel eigenzinnig zelf geregeld en dat in een tijd dat er slechts een handvol Nederlanders in Amerika ging studeren. Pietje vond redelijk snel zijn stekje in Holland House on 944 East 19th Street, een van de Nederlandse bastions rond de campus die volgens velen de inspiratie is geweest voor Animal House, de film die later in Eugene is opgenomen. Studeren, mits er niet te veel boeken aan te pas komen, kan op zich zeer aangenaam zijn, maar in ons geval was het uitzonderlijk veel lol. Het was iedere dag lachen, gieren, brullen, grote feesten op zaterdag, kippen en een serie oude auto's bij het huis, voetballen met het Amstel team, borrels bij Ab en Trudy. Het leek een lange onbezorgde vakantie. De serieuze tijden kan ik mij niet zo goed herinneren maar die moeten er af en toe geweest zijn want we verlieten de stad met wat diploma’s op zak. Toen Bonnie en ik onze prachtige dochter kregen, heb ik mij wat uit het wilde leven teruggetrokken want er moesten wat centjes verdiend worden en Pietje hielp ons af en toe als Oppas Oom. 

Party in Eugene, with Ab, Eva, Larry, Lydia, Pietje, Tuutje, Barend, Bonnie, Phocas.

Toen begin zeventiger jaren iedereen terug in Nederland was, had je natuurlijk niet meer dat dagelijkse contact dat je in Eugene had. Soms hoorde of zag je elkaar een paar maanden niet maar als we Pietje tegen kwamen was het meteen weer als vanouds. “Hest al Paap had?” Tot de dag van vandaag is de groep Oregon studenten maatjes gebleven en Pieter was een belangrijk element daarin. We zagen elkaar op feesten, in Bedum, Ameland, op Den Allerdinck, Amsterdam. En het was altijd meteen weer lachen.

Ik ben dankbaar voor de warme vriendschap die er al die tijd geweest is. Toen Pieter en Agnes in Kuala Lumpur woonden en wij in de Verenigde Staten was zelfs het 12 uur tijdsverschil niet eens een belemmering. Wij beiden kregen de wekelijkse NRC Scripto gefaxed door Bert en we belden elkaar als we een woord nodig hadden of als we gewoon behoefte hadden aan praatje pot.

Pietje was een zeer creatief mens en zijn opinies en oplossingen zijn gegarandeerd nooit beïnvloed door de conventies in de samenleving. Pietje deed wat hij vond dat er moest worden gedaan. Als het werk hem niet meer beviel, hield hij er gewoon mee op. Zo wat? Voor zijn latere opdrachtgevers pakte dat goed uit, want waar de meeste westerse bedrijven blijven steken in dat deel van de markt die zij in Europa kennen, wist Pieter verkooporganisaties te ontwerpen aangepast aan de lokale omstandigheden die oneindig meer succesvol waren. En waren het niet Pieter en Willem van der Ster die als eerste in Nederland account management uitvonden?

Pietje was een intens goed mens. Hij heeft nooit iemand kwaad gedaan en iedereen die ik de afgelopen dagen gesproken heb, spreekt met grote genegenheid en warmte over onze Pietje. Het was tekenend dat de “big businessman” Pieter van Wissen de poes mee naar huis nam die bij hem in Saudia Arabia was komen aanlopen, ondanks de gigantische administratieve rompslomp. 

Dinner in Amsterdam with Barend, Bonnie, Pieter, Agnes, Christa en Bert

Ik stel me voor dat Pietje het zweverige gedoe in de groene weiden met veldbloemen in de hemel al voor gezien heeft gehouden en een kroeg heeft gevonden waar hij hardop lachend een biertje drinkt met nieuwe maten. Houd een paar plaatsen vrij voor je maten! We missen je hier.

We wensen Agnes, Madelief, Jip, Goos en alle verdere familie heel veel sterkte. Het zal heel erg wennen worden.

Friends, Family and Easter Bunnies

It has been four weeks since the start of the new immunotherapy drugs, and this week I had the third infusion. We still have to wait another four weeks for the CT scan, and meanwhile we are of course looking for any sign that hints as to whether these experimental drugs are effective. The short answer is that it is still too early to invest in Bristol Meyer Squibb shares, because we are getting some mixed messages. The bone cancer had spread to the right hip even before the new drugs and is now starting to give some serious discomfort. I asked the Oncologist to refer me to the radiologist to nuke my butt. Radiation looks like an easy fix because it took all the pain and discomfort away when the cancer affected the left hip. Unfortunately, the test protocol, to which I must adhere, does not allow radiation and the pain is now managed with opiates. I don’t want to be too graphic about the side effects of drugs containing opium, and let’s just say that it appears to shut down all internal traffic.  Bonnie went to Costco to buy the remedies in bulk and the check-out person must have wondered about her well-being since there were few food items included in the purchases. As usual another Costco employee inspected Bonnie’s shopping basket at the exit, all the while making sure not to be downwind from her.

I lost another 5 pounds in the past two weeks, and that was before Bonnie came home with the recommended remedies in bulk.  We hope the weight loss is a side effect of the immunotherapy because it is generally not a good thing. On the positive side, I have not had any chest pain, feel good and enjoy life. The results of the CT scans are always anxiously awaited but this next one will have a particularly big effect on how we will manage our future.

What made our lives particularly enjoyable was a visit from our very good friend Alison, whose bubbly personality livened up the house for the past 12 days. We know Alison from our time in Belgium and we have countless memories of great parties and outings. Now, 25 years later, the parties sizzle out a little earlier in the evening and the intake of food and alcoholic beverages are perhaps a little more modest, but it was just as enjoyable. Nevertheless, I noted with some satisfaction that the glass recycling bin was full, and the reduced content of the wine cellar will allow us to organize some wine tasting expeditions again.  The advantage of having visitors is that we get to experience some items on our nice-to-do list, and the Portland City Grill, Pok Pok and the Crystal Springs Rhododendron Gardens are now officially crossed off that list (not that they cannot be revisited with future visitors). We dined the Portland City Grill, which is on the 30^th floor of the US Bank Building, on a gorgeous day and were able to see three volcano's from our window seats. The food was fabulous and the restaurant is definitely recommended, especially on clear days. Afterwards we went to see “Menopause, the Musical” on (Portland’s) Broadway. It was hilarious and my fear that I would be the only man among 300 women proved unfounded. I counted 3 other men in the audience. I had chosen seats on the last row of the theater, because I was not looking forward to the audience participation in this kind of environment. One of the other 3 men in the audience splurged on front row seats and he must have regretted that because he definitely looked uncomfortable after his unwilling participation.

We had lunch at Pok Pok, a restaurant that serves surprisingly tasty Thai inspired dishes in a piece of real estate where a reasonable person wouldn't even park his bicycle. It consistently shows up on lists of best value or things to do in Portland, and Dutch readers would be interested to know that you can get a full meal for the price of an appetizer at Portland City Grill.

The Easter Bunnies

Sara, Josh and the grand-kids visited us on Easter Sunday. The weather was cooperating and the Easter Bunnies hid lots of eggs in our front garden. Kellan now understands the concept of Easter Egg hunts and filled his Easter basket in record time, not realizing there was actually chocolate inside the plastic eggs. We all sat down for a late Easter Lunch, with a nice leg of lamb from the barbie and all the trimmings and wine to go with that. We are grateful that we get to celebrate the holidays with friends and family. It makes it so much more meaningful.

A hug after a successful egg hunt

After Alison left I decided to make myself useful and start cleaning the concrete slab in front of the garage with the pressure washer we borrowed from our nice neighbor Tom. Unfortunately, and I hate it when that happens when you use someone else’s equipment, the machine had a defect and no longer pressurizes the water. Tom and I bought some parts and tried to fix it, but to no avail. He called the manufacturer and they seemed to think we have a malfunctioning unloader valve. Hello! That sounds a little too familiar. Maybe Miralax will help here as well.

Of Guinea Pigs, Romance and Financial Advice

The Providence Cancer Tower in Portland

We had a busy two weeks. During the chemo-vacation, we were on two-weekly oncology visits because cancer can grow fast and unexpectedly. And so it did.  Our oncologist worried about the chest pain that seemed to be getting worse and the pain in my back and butt that did not go away. She went into full panic mode and when she does, things happen. A CT scan and MRI was scheduled for the next day and we came back two days later to discuss the result. The news was not exactly what we wanted to hear: the bone cancer had spread to the right hip and the damage in the lung had enlarged and is now diagnosed as cancer as well.  That was a bit of a bummer, but amazingly there are still a few choices left: we could switch to a pill based cancer drug called Tarceva which can delay cancer growth and add some time to the good life we are having without too many side effects. Alternatively we could participate in a clinical trial of an immunotherapy drug that is in development.

Our Oncologist

I had read about immunotherapy drugs and knew that every major pharmaceutical company is racing to get these kinds of drugs approved. We are fortunate to have an oncologist who is a leading scientist in the field of Lung Cancer Research and supervises one of the three test legs for Bristol Myers Squibb. She thought I could qualify for the clinical trial and we started the paperwork immediately. The test protocol requires a number of tests that had to be completed before acceptance and that included another MRI in the afternoon; a biopsy of lung tissue on Monday; a CT scan and a bone scan (that requires an infusion of radioactive material – our toilet now glows in the dark) as well as an X ray on Tuesday and too many blood samples to remember. On Wednesday we went to the hospital to check if any of the tests had disqualified my participation, and when that was not the case, the first infusion started right then and there. 7 hours later we walked out of the hospital as an official Guinea Pig with the new drugs infused and hopefully they are now killing some cancer cells.

Portland and Mt Hood

Hilton Portland

In the middle of all that medical ado, romance was flourishing. On a beautiful Saturday, March 22, Bonnie and I celebrated 45 years of marital bliss with a romantic date in Portland. The afternoon started with an exquisite lunch in restaurant Andina, according to Urban Spoon one of the top 5 restaurants in the city. For the Philadelphians: this is the Peruvian equivalent of restaurant Amada: it cannot get any better than that. This was followed by a white wine tasting in the Hilton, and a classical concert in the Arlene Schnitzer Center. Bonnie was a little disappointed she was not called on stage this time but other than that the concert was perfect. Afterwards there was, of course, a tasting of the regional red wines and snacks before stumbling into our room at the Hilton.

Ferry Street, Eugene Oregon.
Bert Versteege, Eva Ouwehand, Phocas Savenije,
Larry Lissman, Lydia Simoneau and the
gorgeous bride

45 years of marital bliss: March 22, 1969 and March 22, 2014

About the new cancer drugs:
Immunotherapy is probably the future of cancer treatment. Whereas traditional cancer drugs target and kill all kinds of fast growing cancer cells (and hair is one of these fast growing cells, that is why you lose it), immunotherapy enables the patient’s own immune system to selectively kill cancer cells.  The system would always do that, were it not for the fact that cancer cells bind certain proteins, which make them appear as normal cells. Pharmaceutical research is now focused on removing the proteins from cancer cells so that the immune system’s T cells can - chomp, chomp - eat the cancer cells. It was first discovered in Melanoma (the deadly form of skin cancer) treatment and Bristol Myers Squibb has an immunotherapy drug on the market that shows a spectacular improvement in 3 year Melanoma survival rate. At $120,000 for 4 injections there better be some improvement. Lung Cancer is the most common form of cancer (over 200,000 cases in the US every year) and that is where the real money is. It is no surprise that the immunotherapy concept is now being applied to lung cancer and Bristol Meyer Squibb (BMY), Merck (MRK) and Roche are apparently the front runners. The Phase 1 test in which I participate is a combination of two drugs that are given intravenously every two weeks (Nivolumab) and four weeks (Lirilumab) to remove 2 different proteins from cancer cells (PDL1 and KIR). The Wall Street Journal estimates the price of this drug, when approved, to be $ 220,000 per year and that times 200,000 new cases per year translates to $ 40 billion in sales. Ka-Ching..! With the many uninsured people in the US, it will not go that fast, but according to the WSJ, Bristol Meyer Squibb could add another 6 billion sales in three years, which is a significant increase compared to the 30 Billion Sales they have now.  In my hospital, 8 patients were already in the clinical trial when I started. The wife of one of the patients wrote in a web forum that her husband had a 41% reduction in tumor size after 8 weeks. Wow.  I don’t know about the other 7 and the medical staff will not discuss patients. However, as long as you see new installments of this blog, BMY shares look like a winner. If the blog suddenly stops, it may be time to sell.

Since this is a public blog, the above is not investment advice, we do not currently own BMY and you better do your own DD.

Spring is arriving

Medical Update

The medical situation is good but a little confusing. The last chemo infusion took place on January 21 2014. Four weeks later I had my usual CT scan and visited the oncologist one day thereafter to hear the results. The good news was that the tumors had not grown and some previously found cancerous lymph node in the abdomen was apparently cancer free. The CT scan also showed that a large part of the right lung was dysfunctional, which is noticeable because climbing a flight of stairs leads to heavy breathing, and not for the reasons one likes to. The oncologist could not tell whether the damage was due to delayed scarring from radiation, or a reaction to the docetaxel, the chemical compound that was infused. She decided to withhold any treatment for the time being and I have been on a chemo-vacation for the past 3 weeks. That certainly improved life: Hardly any coughing, a little more air, and no annoying side effects such skin rash or itching. My hair is starting to grow again and I had to be retrained in the art of shaving. I have been to the oncologist’s office for a checkup meanwhile and I will stay off medication, probably for another 4 weeks.  This is good. Spring has arrived, the temperature of the rain is increasing and I will not be house bound as I was during the winter.

Snow travel

Since the last blog, we had our week vacation in Maui. Leaving for Maui turned out to be a challenge. The first three days of snow and sleet this year happened exactly at the time we had to leave. We took one snow shovel when we moved from Pennsylvania and that is the only snow equipment in the entire neighborhood. Bonnie’s water aerobics training was put to good use when she managed to clean the driveway to the top of the road, only to find out that the homeowners association decided to save some money by not clearing the roads in the development itself. The next day we had another dump of snow and even our all-wheel drive car would not have made it up the steep driveway. Josh saved the day. He bought two extra snow chains for Sara’s all-wheel drive swagger wagon, which now had snow chains on all four wheels, and was able to rescue us. We left the night before the flight and we all stayed at a Portland airport hotel because there was an ice storm forecast for the day of departure. The fact that the plane was completely full is a miracle: there was indeed a thick layer of ice on the ground and travelling was not easy.

Maui

The week in Maui was, of course, fantastic. Sara and Josh had arranged a nice apartment with a studio attached. Nice sunny weather, palm trees, beaches, swimming pools and beers in lounge chairs: what else does one need in life? This was perfect. The grand kids had a ball and kept parents and grandparents to a lesser extent, busy in swimming pools and on beaches.

Grand-kids waiting to feed Koi fish

The kids participated in feeding fish in the koi pond at the end of the day. Other activities included snuba diving in the ocean, surfing, football in the pool, spa visits by the adult women and very little shopping: I call that a successful vacation.

dinner and umbrella drinks

Surfer Babe

Valentines Day was celebrated in style. Bonnie and I drove to the other side of the island and had lunch at "Mama's Fish House", probably the most famous fish restaurant on the entire island and romantically situated on a palm beach.

grinning on a selfie

The food was exquisite. Fish caught around the island was freshly served the same day but to my dismay that included Opa or Opah as it spelled in Hawaii. The kids were quite amused that Opa was served pan-fried or grilled.




Spring and visitors are coming

The fear for a drought in Oregon was premature. The precipitation we lacked early in the rain season came down in buckets in February and March. The reservoirs are full to capacity and the snow level is back to normal. The temperature is increasing and most days we get to 50F or higher, but often with rain or showers. Plants like that, people not so much. The signs of spring approaching are everywhere and we enjoy seeing the first flowers but we especially enjoyed the first visitors this year. Jacqueline visited us the first weekend in March. It was an enjoyable and relaxing couple of days with few excursions. Tammo and Aafke arrived the next weekend for what I thought was going to be a weekend of strenuous projects around the yard. The rain however provided an excuse for a lazier visit but in between showers a big pile of firewood got transported to the garage.

A star is born

Tammo, Aafke, Bonnie and I went to the Keller Auditorium, the biggest stage in Portland, to see the Blue Man Group, who were touring the pacific Northwest. The show was humorous and spectacular and we enjoyed the performance. As professional and talented as they are, their performance paled in comparison to Bonnie's on stage performance. Out of a total audience just shy of 3000, the group needed one member of the audience to help their skit. They of course looked for the best dressed and most elegant spectator and zeroed in on Bonnie. She was helped on stage, asked to wear a blue bib, and take a seat at the on-stage dining table with the three blue men. In the skit they were supposed to eat Twinkies, a gooey sweet concoction, guaranteed not to contain any natural ingredients. This is of course not on Bonnie's diet plan, and that added to the length and fun of the skit. She later ate some of the banana that was on stage and her bib magically started spouting some kind of goo. After about 15 minutes, Bonnie was still having way too much fun and the blue men had to gently push her off stage and back in her seat. Everybody liked it and she got a big applause and credits at the end of the performance.

Finally:

Yesterday I had a health visit with the Pulmonologist, the poor guy who drew the short match and had to give me the "you have cancer speech" when it was first discovered. He remarked that it has been close to a year and he considered that "quite a feat". Good. I like to know which superlatives he will use when we meet one year from today.

Chilling in January

After all the excitement and visits in December, January is definitely a slow month for the retirees. I imagine that all the eager beavers who are still dependent on work to make an income do not share this sentiment, and are probably looking for ways to make some extra money after an expensive December month. We geezers can just sit back and watch our bank accounts fill up effortlessly. J. Well, not entirely, we went to the social security office to apply for Bonnie’s social security benefits and that was a couple hours of strenuous work.

The weather in Oregon added to the slowness. We have not seen much rain and the entire state is experiencing a severe drought. The first forest fires have started and the ski resorts were unable to open some lifts due to lack of snow. Even so, for most of the month we have not seen temperatures much above 40 degrees F (5 C) and often have foggy mornings. Lung disease does not agree with that kind of weather and we stayed indoors a lot of the time. The advantage is that we did not catch colds or flu bugs.

The chemotherapy which I had last week is starting to become routine: first the basic health checks (they are still excellent) blood tests (also good considering the medicines that destroy the immune system) and then a couple hours for the infusion.  The next day I went back to the hospital for a shot to boost production of white blood cells. The chemo has side effects; in particular that it makes you itch like crazy, but it also has advantages: I only need to shave every four days and I save on haircuts. I am not completely bald, like some people, but hair is thinning out and the mustache now resembles the first facial hair experiment by an adolescent male.

The Swagger Wagon Wine tour was definitely the high point of the month.

The Swagger Wagon 

As a Christmas present, Sara and Josh organized a wine tour and the four of us took the Swagger Wagon (Toyota Mini Van), for some wine tasting in the Chehalem Mountains. We started out with lunch in Newberg and then headed to the Vidon winery for a private tasting.

25 tastings later..

The Vidon winery is owned by Vicki and Don (hence the name) who are good friends of Sara and Josh and whom we have met some 10 years earlier at Sara and Josh's wedding at the Mt Hood lodge. There are over 600 wineries in the Willamette Valley, but we only managed to do two more that afternoon.

The wineries serve small quantities for tasting, but it adds up after three wineries with nine different wines each and we ended the tour in even higher spirits than when we started. Sara was nice enough to refrain from drinking and dropped us off at home after the event, together with some wines we bought to refill the cellar after the family finally did some serious damage to the contents of that cellar over the holiday period.

We are starting to long for warmer weather and decided to join Sara, Josh and grandkids in Maui for a week. This will be the second week in February. There were still seats open on some flights and we will be traveling way, way back in some middle seats on Hawaiian airlines, which had the shortest flights. It will require some painful adjusting to travel without perks and having to pay for a suitcase (OUCH!).This will be three weeks after the chemo and hopefully the immune system has recovered sufficiently not to catch the bugs of the three hundred people on that flight but I am nevertheless considering the Japanese face mask way of traveling.

The next CT scan will be immediately following our return from Maui and will give us an update whether the cancer is still in check. Meanwhile it has been nine months since the start of the treatment and there is some satisfaction in knowing that the exit takes longer than the gestation period needed to put me on this earth. Probably a lot longer!