Rest In Peace Mom

Nina, my mom, her younger sister, and me

     On December 31, 2022 my mother, Rumi Okada, peacefully died in our home.  She was 94 years old. Until August of 2020, she lived close by in her townhouse with a full-time caregiver.  During the early part of the pandemic, when I was so concerned that I'd bring COVID19 to her, I minimized contact with her.  This was a far departure from my regular visits, meals and outings with her.  The isolation accelerated her decline, and because of the high infection and death rates in senior care facilities, I could not, in good conscience, consider that as an option for her.  Wynn and I had moved to a single story house in June of 2020, so a couple months later, we moved my mother and her caregiver in with us.  We are fortunate that our house was an ideal setting.  Along with full-time caregivers and hospice, I believe we were able to meet my mom's end-of-life needs.  She was a gracious guest in our home.  She never complained. And I was always so grateful that she didn't devolve into the angry, cranky old person that we've all heard about.  She remained remarkably pleasant until the end.  The week before she died was difficult because she was so uncomfortable.  The hospice nurses were so helpful in figuring out a medication regimen that worked to keep her comfortable the last few days.  It is with sadness and relief for her, in equal measure, that I bid her farewell. 

With my mom & Nathan

     One of her caregivers expressed some disappointment that my mother didn't make it into the New Year.  And although my initial thought was..."That's so dumb", as I thought about it more, it brought up a childhood memory that I haven't thought about in years...decades.  I'm dubious that my mom was conscious of the date, but if she was, her death on the last day of the year was consistent with her traditions.

 

 

     When I was a child, every year after Christmas, she and I would have a discussion about when to take down the Christmas tree.  In her family traditions, the week between Christmas and New Year's Day was the time to thoroughly clean house...think "spring cleaning".  The goal was to also have the Christmas tree and decorations packed away by New Year's Eve, so that we'd start the New Year with a clean, fresh house.  At that time, I was in Sunday school
learning about the details of how Christians celebrate the season.  Each year I would tell my Mom that we needed to keep the Christmas tree up until January 6th, Epiphany - aka Three Kings Day.  On this day the three wise men came to see Jesus and brought him gifts - gold, frankincense, and myrrh.  One year when having the annual discussion and disagreement, (I don't remember how old I was, but I know I was still in grade school), my mother quietly and firmly said to me, "The wise men know that baby Jesus is not at Luna's house."  I remember laughing at the time, and this memory still makes me smile.  So...it makes sense to me that she died on the last day of 2022, so that I/we could start 2023 fresh and unburdened by her care.

On a walk with my Mom and Wynn

     I have many sweet memories of my mother.  And although she was very old and not well for a long time, it's always hard to lose a parent.    

 

Mom...Rest in Peace

 

A Birthday, a Decade, and an Ask

     Last week I celebrated my 64th birthday.  It was a good day, punctuated with nice birthday messages, cards, flowers and gifts. Thank you family and friends for acknowledging my day!

     This week is an important milestone, as well.  Ten years ago I was diagnosed with stage 4 lung cancer.  At that time, the survival expectation was 6-12 months from the time of diagnosis, with a 50/50 chance I'd be gone in 8 months. With the available treatments back then, my 5-year survival rate was 2%.   Needless to say, it was nearly impossible to be optimistic.  In the early days of my cancer journey my brother-in-law, Bob, said to me, "You just need to stay alive long enough for the next medical break-through."  At that time, with those odds, Bob's pollyanna comment felt silly, if not, a set-up for failure .  Who knew that his words would be prophetic? 

     Ten years later, I'm still here, being kept alive with a medication that wasn't even FDA approved when I starting taking it.  Since then, there are two more medications I can try when this one stops working for me, and a few more are in clinical trials.  So...I am staying alive long enough for the next medical break-though. (And yes...I have acknowledged to Bob that he was correct.) 

 

     Many life events have occurred and many incredible memories have been made in the last 10 years: 

Athens with Brigid and Jerry

 

 

• Wynn, Nathan, Nina and I have all traveled to new places - Italy, Spain, Japan, Portugal, Israel, Greece, and more. 

 

 

Nina's residency graduation with Karo

• Nina completed medical school and residency, and started a new job in Chicago.

 

 

 

 

 

 

 

Nathan and Banshamlak

 

 

• Nathan has found his life-partner and a life for          himself in Israel, along with making us grandparents!  
  

 

Our grandson, Nori Leeyu

 

 

Our pond...

 

• We moved to a single-story house and moved my aging mother in with us.  

Our garden...

• I have been able to stay healthy enough to help my mother live out her life in our home, while being able to work and stay close to friends. My mom celebrated her 94th birthday last month.
  

 

 

 

 

 

 

 

 

 

 

Clair and Dicky's wedding

 

• I've celebrated milestone birthdays of family members and friends, attended weddings, bat/bar mitzvahs, shared in the joys of new babies, while watching the babies in our life grow into children, children into teenagers and teenagers into full-fledged adults. 

Fishing with great-niece, Nora, at our pond

Life...

it hasn't been perfect, but it's been my honor to have lived this long.  

 

     In celebration of my BIRTHDAY and 10th CANCERVERSARY, please consider making a donation to support ROS1-driven cancer research.  This helps me and others with the same rare type of lung cancer that I have:

https://ros1ders-inc.networkforgood.com/projects/180747-luna-okada-s-fundraiser?from_wicked_finish=true

An Occasion to Blog

     Although I’ve thought many times about posting a blog to update folks about how I’m doing, over the past couple of years I’ve been finding it difficult to carve out the proper time needed.  Today I’m making time. 

     Overall, my journey with cancer is going relatively well.  I continue taking my original oral chemotherapy, Xalkori, (crizotinib), and my follow-up scans and MRIs indicate that my disease is stable.  That’s the good news.  However, I’ve recognized noticeable decline in my overall well-being.  I feel weaker, experience more fatigue, and negotiate more days feeling generally crappy. Today, I’m blogging because I have wonderful news to share that has lifted my spirits and put my cancer on the backburner.

 

  

 

 Nori, hours old

 

 

 

     Earlier this month, our son, Nathan, and his partner, Banshamlak, had a baby boy.  They named him Nori Leeyu.  “Nori” is a nod to my father, Noriaki, and “Leeyu” means ‘unique, different, or extraordinary’ in Amharic.  Banshamlak is Israeli, but originally from Ethiopia.

 

 

      We just returned from a two week visit to Israel to meet our grandson.  I realize that it’s not possible to be objective about one’s first grandchild, but sweet Nori is beautiful. 

     

 

    Banshamlak, (right), is with her sister, Auntie Tova.  Banshi is part of a large, tightly-knit family.  It was so great to meet some of them for the first time on this trip, while getting to know others better.

 

 

 

 

                  ...with Auntie Nina

 

 

     Nearly ten years ago, when I began this cancer journey, I never – in a million years – thought I’d live long enough to be a grandmother.  And yet, here I am. 

 

     Thank you modern medicine and research! 

Ten Months Later...

     So, it's been nearly a year since my last post.  Navigating life and my health through the pandemic has thrown me off kilter.  A lot happened in 2020, so much so that it's overwhelming to actually write down.  My inability to find time to post blogs over the past year speaks to how cluttered my life is, and has been.  Here's a quick update:

     Since my last entry, I've had two sets of routine follow-up CT scans and brain MRIs.  It mostly seems my cancer is still stable.  The last chest CT scan found a very small lesion in the upper left lobe of my lungs.  It's very small and the radiologist did not characterize or describe it in a way that makes us, (me and my oncologist), feel like it's a new tumor site.  It may be "artifact".  In any case, it's too small to do anything about, even if it is a tumor, so the plan is to look at it when I get my next CT scans in a couple months.  Hopefully it will still be very small, or not there.  I'm happy to be busy so I'm not obsessing about it.  

 

     We moved.  After 26+ years in our 2-story home, I was no longer able to happily live on two levels.  We were very fortunate.  Just before the pandemic, we found a single level house in close proximity to our old house, which has made the transition a little easier.  We sold our old house at the height of the pandemic, within a week after it went on the market. Our new house sits on a nice lot and we share a pond with a few neighbors.  As much as I need to live on one level, however, moving sucks.  The place needs some work and tradespeople have been scarce during the pandemic, so it's taking some time to feel settled in.  

 

      My 92-year-old mom, and her caregiver, moved in with us.  Over the past few years, it was becoming more and more difficult for me to manage her house and my own.  Her needs have been increasing with her age, and my energy has been waning with age and illness.  Additionally, it was obvious that the isolation of the pandemic was contributing to her decline. Living on one level allows my mom to get around with her walker and wheelchair.  Although I cannot deny that it is not without its challenges, (i.e. she fell out of bed and broke her arm two weeks after arriving), life is a little better and a little easier with her living here.  Wynn and I both come from families that had grandparents living with the next generation, so we are like-minded about this.  But I would be remiss not to mention that he's been great about having my mom here.  

I'm now in the onerous process of cleaning out my mom's house and preparing it for sale.  I cannot believe all the crap she has.  Nuff said.

  

     Work continues for me.  I'm grateful and a nervous.  Grateful because I'm one that loves what I do and the co-workers I do it with.  My employer has, so far, allowed me to work from home, seeing patients virtually. However, with the vaccine now available, there's increasing pressure for me to return to the office.  I was close to agreeing to going back in, but then U.S. Congressman Ron Wright from Texas died of covid19 earlier this month.  He had stage 4 lung cancer.  He had what I have.  And we know that lung cancer patients have a higher mortality rate with covid19.  My job provides me with health insurance that keeps my medical bills manageable.  So, it's very hard to weigh employment provided healthcare insurance against the 5-6% risk of covid infection - even with both doses of the vaccine.  Five to six percent seems like a pretty small risk...except if it turns out to be me. That's the part that makes me nervous.

   I'll try to post again soon.

Living with Covid-19 and Lung Cancer

     Like many other people who have a chronic illness requiring regular monitoring, I get blood tumor markers drawn every-other month, and CT scans and a brain MRI every four months.  And also, like many other people, I had to delay my scheduled appointments due to the covid-19 crisis. Originally, my tests were planned for mid-March, but I was advised by my oncologist to reschedule them in late-May, unless I became symptomatic...experiencing any signs that my cancer was growing. 

     Early on there was so much that we, as global citizens and lung cancer patients, were learning about covid-19.  As usual, lung cancer advocates and my LC community were on top of it all.  It's no surprise that those with lung cancer have a higher mortality rate...so you can imagine how afraid someone like me can be.  With ventilators being in short supply, the need to triage sick patients was very scary to this 61-year-old with stage 4 lung cancer.  In my rational, practical moments, I get it.  Of course a 25-year-old healthy person should receive a ventilator before I do...but hey...then what happens to me? I have a family that loves me. I have an elderly mother that depends on me. I work and contribute to my community. 


     Although I believe in playing it safe when it comes to this novel corona virus, and I appreciate my oncologist encouraging patient autonomy, I find it so difficult to be the judge of whether, or not, I'm having symptoms.  It's not possible for me to feel achy or have a twinge of pain without worrying that my cancer is actively growing again.  Nope.  Not possible at all.  As much as I hate having all this testing done, I find the reassurance of negative results outweighs the burden of worry.  Covid-19 restrictions threw a wrench into my plans to get that reassurance.   

     With all those thoughts swirling around in my head, in mid-April I contacted my oncologist's office to let them know that I had abdominal pain and many of my bones seemed achier than usual.  The office staff was great and last week I went to the hospital to have testing done, covid-19 fears, and all.  


     

Masks...made by dear friend Sumi

     I've always been a mild germ-o-phobe, but now I'm a serious one. Walking into the hospital, I donned a mask and wore a windbreaker-type coat, zipped up. I was relieved to see there were very few patients in the registration area, and the ones I did see didn't look like people...but more like virus incubators.  No purse that day...I had put my keys, ID, insurance cards and orders in my pockets.  I brought my own pen and tried not to touch anything.  In the seating area of the waiting room, I stood.  In the CT/MRI patient prep room, I gingerly put my personal items in a locker, locked it up, and walked to a sink to wash my hands...for 20 seconds. 

     The CT and MRI rooms only had one tech and me in them.  As I looked around, there were multiple canisters of disinfectant wipes positioned around both rooms, helping me believe the rooms and machines were wiped clean. I was able to keep my mask on during the CT scans, but had to remove it for the MRI because it had a metal wire in it.  CT scans were first, followed by my MRI.  By the time I laid down on the MRI table, I was so exhausted from being stressed out, I closed my eyes and promptly fell asleep.  It was over in, what seemed like, seconds. Then I donned my face mask and windbreaker, (my version of PPE), and walked out of the hospital as fast as I could.

     As I drove home, I noticed that I wasn't feeling the abdominal pain that brought me to the hospital in the first place.  Could it be that my pain was in my head?  Could it be that I had pain only because I needed to have the reassuring tests?

Socially distant bike riding, w/ Nina, Wynn, Mike, Ann & Megan.  

      Well...the answers are, embarrassingly, yes and yes.  All tests...blood tumor markers, CT scans and brain MRI indicate that my cancer continues to be stable.  
 

     I grew up with parents, teachers and coaches who taught me to embrace a "mind over matter" mentality.  Unfortunately, there's no doubt that, in living with stage 4 cancer, I often live in a "matter over mind" state.

It sucks.  And this time, cancer was scarier than covid-19.   

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.