Another Birthday...What Are the Odds?

Birthday dinner with Wynn and Nina

     Yesterday, I turned 61.  And, in one week it will be seven years since I was diagnosed with stage 4 lung cancer.  In 2012, the prognosis for someone with my diagnosis was 6-12 months, with the median longevity being 8 months.  (Median longevity, in my case, means that 8 months from the time of diagnosis, 50% of patients are alive and 50% are dead.) Back then, my five-year survival rate was 2%.  Pretty sucky, wouldn't you say?  I don't know why I've survived beyond  expectations.  I have many friends I've met through my lung cancer community that have passed away - some in their 20's and 30's...with young children.  

     When gambling in Las Vegas, one goes there knowing they will be playing the odds.  However, most of my life, I've been naive ignorant to the conscientious gathering of knowledge and strategies needed to tip the odds in my favor.  In general, I just lived my life and hoped good things would happen for me.  I now know that there's loads of information one must consider when hoping for a particular outcome. Even so, when I think about the odds that I would be here to celebrate my 61st birthday, nearly seven years after my diagnosis, I'm pretty sure the odds category would be in the "slim to none" range.  Yet, here I am.  

     Like I mentioned earlier, I don't know why.  Although, in my observations over the last seven years, it really does appear that the patients that know the most, live the longest, it's also very evident that plain old good luck has a significant role here.  Plain, old good luck is that nebulous, uncontrollable phenomenon that leads us to success.  Plain, old bad luck does the opposite.

     As with every birthday since my diagnosis, I am filled with gratitude...for my family, friends, medical care team and lung cancer community. This year, I'm focused on being grateful for an abundance of good luck...that phenomenon that I don't have any control over.  For my birthday, please join me in hoping that my good luck won't run out anytime soon. 

(Thank you!)

Scan Update and Greece, 2019

     First of all, let me say that recent follow-up CT scans of my chest, abdomen, and pelvis indicate that my oral chemotherapy, Xalkori, continues to do its job.  My brain MRI this month was about the same as the one in July, which found the tumor to be a bit bigger than earlier, post-CyberKnife, images.  There are no new tumors.  My team of doctors still feels that I have delayed radiation necrosis, and have nothing to worry about, at this time.  I'm going with that, because I'm not symptomatic and...I trust them. 

Jerry, Brigid, Wynn and me, at the Arch of Hadrian

     Since 2018 was such a crappy year, Wynn helped me do our best to make 2019 a better one.  So, along with traveling to Portugal in the Spring, we made our way to Greece in October. We traveled with our next door neighbors and dear friends, Brigid and Jerry.  Brigid and I used Rick Steves' Greece:  Athens and the Peloponnese travel guide, online information and tips from our family and friends to plan our trip.  I'm sure she'd humbly agree with me that we did a fantastic job planning every detail! 

The Parthenon, at the Acropolis

The Porch of the Caryatids, at the Acropolis

      We spent a day and a half in Athens, and really feel that was plenty.  We were told that there are 10 million people in Greece; 5 million living in Athens.  It's much like many large European metropoleis, crowded and somewhat grimy.  Graffiti is everywhere. We stayed in a really nice AirBnB in central Athens, so getting around wasn't too bad. There are many ancient sites to see around the city, [Ancient Agora, Arch of Hadrian, Temple of Olympian Zeus], but my favorite was the Acropolis, the ancient city at the top of Acropolis Hill, where you'll see loads of ruins and a very impressive sprawling view of Athens below.  It was our intention to visit the Acropolis Museum, but - a word to the wise -, it's closed on Mondays, so we missed it.  

 



 

Mycenae

 
     
     We hired a driver/guide who drove us to the Peloponnese peninsula, making stops at the canal in Corinth and Mycenae, an ancient fortress city. 

 Nafplio at sunset.  Notice la luna.

    

     We ended the day in Nafplio, a beautiful coastal city on the Argolic Gulf of the Aegean Sea.  Wynn had his first swim in the Aegean Sea here. 

The amplhitheater at Epidavros

        From Naplio, we hired another driver/guide who drove us first to Epidavros, and then onto Ermioni.  Epidavros was the healing center of ancient Greece, and home to Asklepios, the god of medicine.  Asklepios was Apollo's son, and it is in Epidavros that you will find the remains of a hospital, other medical facilities, a bath house, a stadium and amphitheater.  There's a small museum that includes ancient surgical tools.  When we visited the amphitheater, I stood on the designated spot, and Wynn and Brigid walked to the top row of seats.  Before taking their picture, I said, "Smile", (unamplified and purposely in a normal speaking volume).  They heard me...loud and clear.  This theater holds 14,000 and is still used, regularly, to this day.  Our driver took us to Ermioni, where we caught a 30-minute ferry-ride to a small island called Hydra, (pronounced "Ee-drah".)

     Hydra is unique in that there are no cars nor motor bikes on the island...only donkeys.  It's small and extremely hilly, with streets so narrow that fully-loaded donkeys can barely get through. 





 

     Every morning, boats arrive with all needed island supplies, (food, water, building materials, merchant wares - everything.) These items are loaded onto donkeys and delivered all over the main city, Hydra Town.  We went to Bisti Beach, only accessible by boat.  


 

Congratulations to Nathan and Banshamlak!

     From Hydra, Brigid and Jerry went onto the island of Santorini while Wynn and I hopped a plane to visit Nathan in Tel Aviv for the weekend.  Nathan became engaged in September to Banshamlak, (pronounced "BAHN-shahm-lock"), so we wanted to see them and meet some of her family.  Although it was a quick visit, it was wonderful to be with them both.   







     We rejoined Brigid and Jerry on the island of Naxos, the largest island in a group of islands in this region called the Cyclades.  Naxos isn't as built-up or touristy as say...Santorini or Mykonos, so it was quiet and a bit slower.  Because it rained the day we planned to tour around, we signed up for a day-long bus tour.  It was probably our best option, given the weather.  We stayed in a family owned hotel, Nastasia Village Hotel, which was lovely.

Windmills on Mykonos

      After two days on Naxos, we took a ferry boat to Mykonos for our last three days.  Mykonos is famous for it's beaches and night life. When I say, "famous for it's night life," I mean loud night clubs with pounding music spilling into the streets with lean, tall, dark and handsome men employees, who call out to young women walking by, while waving their arms, inviting them to come into their clubs.  The key word in that last sentence is 'young'.  Each time Brigid and I walked by a night club, with Jerry and Wynn behind us, these handsome men would take one look at us, drop their arms, and it was like....crickets.  At first, as I walked by these silent men looking at their feet, I said, "Oh. Come. On.", with a smile on my face.  By the end of our walk, I turned back and said, "Listen...we didn't always look like this!"  We went to a beautiful beach, by public bus, called Elia.  It has lounger chairs and beach umbrellas, with drink/food service and nice restaurants close by. We stayed at a great place called Aeolos Mykonos Hotel, run by an incredibly attentive owner, Gus. 

A small portion of the Delos civilization

     
     We took a 1/2-day trip to Delos, by ferry, from Mykonos.  In its day, Delos was an important and busy port city, in terms of religion and commerce.  The ruins on Delos give you a great sense of how active these civilizations were in ancient times.  It's fascinating.  There's no shade on this island, so wear a hat and bring water.  The museum is good, and has air conditioning. 


     
     Our trip to Greece was amazing and traveling with Brigid and Jerry was easy.  In no way was I disappointed, but I'd be remiss if I didn't mention two negative observations.  1)  I love green and lush terrain...think Lake Tahoe/Sierra Mts and the forests of the Rocky Mts.  The waters of the Aegean Sea are natural variations of blue that I have never seen before, but the Greek islands are volcanic, brown and scrubby.  It seemed like much of the region is gray, beige...and dusty.  I love history and really loved standing in the places where the mythical stories I have read took place.  However, after two weeks in Greece, I was a bit ancient-ruined out.  There's so much.  And, 2)  I was disheartened when looking at ruins, either outdoors or in museums, and reading that the item I was admiring was a replica, with the original being housed in a museum in another country.  I asked a tour guide why that is and was told that many antiquities were sold to other countries or wealthy collectors and replaced by "exact replicas", (in a tone implying that it was the same.) 




      I will end this blog on high notes:  The food...all food...in Greece is outstanding.  Whether we dined at a mom-n-pop eatery or a fancy Athenian restaurant, it was all amazing.  We didn't have a bad meal the whole time we were there.  The people of Greece were wonderful to us as tourists.  They were friendly, cheerful and helpful.   
 




     Would I go back?  Without hesitation.  Based on conversations with some Greeks we met along our trip, I'd love to visit the islands of Crete and Rhodes next time.

Kwik Health Update-Fall 2019

Wynn on a Fall ride

It's been a while since I last posted.  The summer months were good for me.  Continued rehab has helped me get stronger so my multiple hip surgeries of 2018 feel, increasingly, like a distant past.  Although the actual hip joint feels OK, the surrounding muscles, ligaments, tendons and skin have taken on a new feeling and appearance.  I have a lot of scar tissue along the surgical site, which doesn't feel normal, and may never.  Despite doing all the recommended therapies, now that I am approaching a year and a half since my third surgery, it is more and more doubtful that the scar tissue will ever breakdown.  I'm pretty asymmetric...not only is my left hip area weaker, but it is visibly smaller.  I've mostly shed my cane, except in my house going up the stairs, and when I'm out and know I will be walking a long distance.  Using the cane helps relieve the intense muscle ache...that butt burn, and gives me some assistance with my nagging right knee.  (Rehabbing my left hip has put added stress on my right knee.  I'm told this is pretty common. I need to get it checked out, but have been avoiding orthopods for as long as possible.)

In July I had routine CT scans of my chest, abdomen and pelvis, along with a brain MRI.  The good news is that my cancer is stable below my neck, and we think it's stable in my head. The brain tumor that I had CyberKnifed in 2017 is looking a little funky.  It's not clear if it's increasing in size, or more likely, radiation necrosis, with delayed inflammation. I was referred to see a neurologist, and have very minor symptoms...so minor that I haven't notice anything.  My team of doctors isn't concerned right now, so I'm trying not to be.  I'm scheduled for follow-up imaging next month, which will hopefully tell me more. 

We recently went to Greece for a couple weeks.  I'll post pictures as soon as I can.   

Reaching for the Sky

     It's no secret that 2018 was a terrible year for me.  Recovery has been my toughest physical challenge ever...harder than stage 4 cancer.  

     What I didn't appreciate until several months into my year of rehabilitation, was how my psyche had taken a hit.  In my continuous effort to balance that triad (my mind, body and spirit), I realized that, although my body was on its way to recovery, my mind and spirit were lagging behind.  It was as if I was experiencing some version of PTSD.    

      I have a good support system...family and friends.  But, despite many long conversations, questions about why my femur broke and indescribable uneasiness about my traumatic 2018 remained close to the surface of my consciousness. So, I did two things:

• #1 - I made an appointment with a counselor
• #2 - I made an appointment with the surgeon who did my first hip replacement

     I've sought counseling assistance to navigate my life, every so often, since my early twenties.  It was during graduate school (for genetic counseling) that I learned that talk therapy adds a different, and most times, healthier perspective. With my hip/femur trauma and cancer, coupled with life's other "stuff", what better time to seek another perspective of this overwhelming life of mine.  It has definitely helped me and I recommend it for anyone who finds themselves in "that" place.  You know. 

      It was also important that I met with the surgeon.  (Not only was he the guy who did the initial hip replacement, but he's also the attending physician that decided not to get an X-ray despite me telling his resident that I heard a "clunk" and had shooting pain down my leg on my maiden walk).  He was clearly nervous when he came into the meeting and started out, not unexpectedly, defensive.  I told him that I needed him to hear what happened to me...from me, (without interruptions), and that I had questions I needed answers to.  With hands up, palms facing me, he said, "OK...I'm listening."  I was sure he knew what had happened to me after that initial surgery.  My second surgeon is his partner and I was told they had communicated about me.  In any case, I wanted, needed, him to hear how each complication affected me and my family.  Wynn and I asked him a slew of very specific questions about my surgery...what he did and how he did it.  His answers were, in turn, very detailed.  When he finished, I asked, "So why did I fracture?" and he said, "I don't know."  

      We let him know that throughout the whole ordeal, the only person on his team to apologize was his physician assistant, who said that she was sorry this was happening to me.  We read no admission of guilt in her apology, only genuine sadness. He tried to remind us that he had apologized when he came to see me in the hospital, but we told him we recall his contrition and were hoping to hear the words, "I'm sorry" from him, but didn't. He said, "Well, if I didn't say it before, I'm saying it now.  I'm sorry.  I think about you all the time, wish I had ordered an X-ray, and have changed how I practice because of you."  So we said, "Like how?" 

• #1 - He has lowered his standards for ordering an X-ray.  
• #2 - Rather than having a check list for patients' benchmarks for discharge after his surgeries, [ie. Can walk 20 yards with a walker, Can walk up and down one flight of stairs, etc.], he now attaches quality measures [How well did the patient do these tasks?, and What is the patient's pain score when doing these tasks?] 

     Given that the guy doesn't know why I fractured, I have to swallow, yet another, pill of uncertainty.  Before the surgery, I recall a thorough consent discussion about risks, benefits and limitations.  And although I don't specifically recall any discussion about the possibility of a femur fracture, because I have metastatic disease in my femoral heads, I understand that this could happen.  Our discussion with the surgeon helped me put to rest the question of whether, or not, major mistakes occurred during surgery.

     Before this meeting, I thought about how the interaction might go.  And since then, I've spend more time contemplating how I feel and how I can move forward.  I have come to a place where I can live with more uncertainty, mostly since he was a nice guy about hearing me out, answering our questions, apologizing, and letting us know what he's learned from his experience with me.  I hope that, at minimum, he is a better doctor.  I feel that I'm on the path to finding my peace and hope I can successfully put 2018 behind me.

 



     It's not possible for me to come across a living thing, like this tree, without seeing some symbolic meaning.  I found this tree on the trail to ShiShi Beach on the Olympic Peninsula.  Look how it fell over, then contorted and twisted itself to continue to grow.  It looks like it had to work hard and stay the course to keep living.

     The center trunk in this picture is the top portion of the twisted tree above.  After some obvious challenges, it reached for the sky and grew tall and strong.  

     I hope I can do the same.

... Wish me luck.

What a Difference a Year Makes

Regal bald eagle, Olympic Peninsula, WA

     April, 2018...the lost month.  During the last week of March (2018), I had two major surgeries, and a third one in mid-April.  I spent all of April in the hospital and by the time I returned home, I had lost 20 pounds and was so weak that I struggled to sit up.  The only way I was able to get around my house was with a walker. A WALKER!

     
     In early May, I started going to physical therapy three days a week.  Initially, even getting to PT was a big deal...I was never sure I could get up and get my ass in the car. I had to prep myself before each appointment with a nap, and came home from each session needing another.  That went on for weeks.

     Incrementally, I got stronger and incrementally, I became hopeful.  Since then, I've been committed to exercising every day. I am stronger.  On most days, I don't need my cane, (except to go upstairs in my house).  I'm still a bit clumsy and trip fairly often, especially when fatigued.  I gained some weight back, which I needed to do in order to build stamina.  Overall, I'm doing OK.

Port Townsend

     April, 2019, has been much different. During the first week, combining work with pleasure, I spent three days with my dear friend, Stefanie, hanging around the Olympic Peninsula. We shopped, went on long walks, and hiked near ShiShi Beach. Then I  attended a genetics conference in Seattle.

 

     This is the trail to ShiShi Beach.  It's a 4-mile hike from the parking lot to the beach and back.  I didn't make it this time.  We arrived mid-afternoon and I didn't have the strength nor speed to get to the beach and back by sundown. So...I guess I need to go back when I'm stronger. I'm happy to try again.






 
     


     I came home for one week, then Wynn, Nina and I flew to Lisbon, Portugal.  Nathan and his girlfriend, Banshamlak, flew from Israel to meet us for part of the time. It was a glorious trip - not only because Portugal is beautiful and fascinating with a long, rich history and friendly people, but because we were together. From Magellan to the soccer superstar, Ronaldo, the Portuguese have lots to showcase.  It's a profoundly Roman Catholic country and we were told that 97% (that's a lot) identify as such. 

The Church of Sao Francisco

     The day after flying into Lisbon we took a train north to Porto, Portugal's second largest city.  This is a spectacular church in the heart of Porto.  Its (overly) ornate everything speaks to Portugal's history of exploration and colonization of other countries, then bringing riches home to decorate; a common practice back then.  

      On day 2 in Porto, we hired a guide to take us to the Douro Valley - the place in the world where port wines are made.  The hills along the Douro River were terraced hundreds of years ago and the terrace walls are protected by the UNESCO Heritage Foundation.  Grapes are grown in this valley, made into port wines, (wine with grappa or brandy as a preservative), then trucked an hour and a half to Porto to age in the cooler seaside air.

      We visited two vineyards; one small, family-run vineyard called Marrocos, where the operations are very different than larger ones, but both still stomp the grapes by feet. Because there are very large vineyards, some owned by foreign entities, there is a controlling body called the Port Wine Institute that regulates everything - how much wine is produced at each vineyard, the types of

grapes grown, the quality and distribution.  Each

legitimate bottle has an Institute sticker. We were told that the Institute protects the smaller vineyards from being bought out by the larger ones.
       We also visited and tasted ports at a large, British-owned vineyard called Croft.  Port wines are sweet, and I loved them.

     One of my favorite parts about traveling is noticing local residents.  This man is a friend of our guide and has lived in this region his whole life.  When I asked him if I could take his picture he said, "Why not?!"...in a charming Portuguese accent.

     No hotel rooms on this trip...we rented AirBnB apartments.  Although we ate out a lot, we enjoyed shopping at local markets for a few home cooked meals.  This is the garden of the place we stayed at in Porto.  That's Nina sitting and planning our day with the Douro River and Vila de Gaia, the city across the river from Porto, in the background.

Wynn

     We planned our trip a la Rick Steves' Portugal travel book.  We did several walking tours he suggested, which brought us to this beautiful city park.

     We walked across the bridge from Porto to Vila de Gaia.  In the olden days, these boats brought the port wine barrels from the Douro Valley to Vila de Gaia to age.  You can go to tasting rooms here, too, and the view of Porto from this side of the Douro River is beautiful.

Drinking cherry liqueur in chocolate cups is a thing in Portugal.  It's called Ginja, and is a great treat anytime of the day!

     The Portuguese love painted tiles and mosaic sidewalks.  This is just one example of the hundreds, perhaps thousands, of miles of mosaic sidewalks in this country.  Most streets are cobblestone and since they are so old, some are very uneven.  I saw several people turn an ankle while strolling along.  I may have missed a few sights because I was looking down while walking.  

     We walked through an open market one day.  The fresh finds were mouth watering.

     After a few days in Porto, we returned to Lisbon to meet Nathan and his girlfriend.

     This is the Monastery of Jeromimos in the Belem area of Lisbon.  It's massive.  If size and grandiose-ness was the measure of importance to these people, then religion was paramount. 

     This is a view of the church's dome from inside the monastery's courtyard. The Moorish architecture is throughout and like most all old churches in Portugal, the insides are covered in gold leaf.

     Close to the Monastery, on the banks of the Tagus River, is Padrão dos Descobrimentos, the Monument to the Discoveries.  It was built in 1960 and you can appreciate its size by the people in the bottom of this picture.  Henry the Navigator is at the tip with the likes of Magellan and Vasco de Gama represented.  It's also massive,  so discoverers must be important to the Portuguese as well.

 

     We spent a day with a guide, Hugo Martins, who took us to Sintra, Portugal.  It was a 20-30 minute drive from Lisbon and is home to many old palaces, castles, and beautiful parks.  On the top of the hill behind us is the Pena Palace.

     This is  the mansion and grounds of Quinta da Regaleira.  A really rich guy built this 19th century gothic home, gardens and chapel.  It's another UNESCO World Heritage site.

Nina and me

     This is the Initiation Well (Poço Iniciáticoin) at Quinta da Regaleira...

...and this is a view of the garden from the mansion.

Nathan and me

     




     Our guide, Hugo, drove us back to Lisbon along the Atlantic coast.

     I took this picture on the last day in Lisbon.  It's from the bedroom window of our AirBnB.  I love the sky, the church, and view of the Atlantic Ocean...note the ginormous cruise ship.

     This trip was really special to me.  Portugal is a hilly place with very steep streets in Lisbon and Porto.  Despite pushing myself to walk a little faster, go a little further, and stay up a little later,  I am certain I was still the limiting factor in some of the activities the rest of my family wanted to do.  But you know what...no one complained!  We all did our best to make this trip memorable...if for no other reason than there were no blowout arguments 😀.