Catching UP

The headline is:  MY FACE IS A DIFFERENT COLOR EVERY DAY!

Last Friday John and I were attending the program " Spies, Lies and Algorithms" in Washington, DC  led by the Road's Scholars.  We had already attended several lectures and spent the morning at the Spy Museum.  I was experiencing some "occular migraines" ( a new issue over the past few months) and spent the afternoon resting in bed at the hotel.  I woke up abruptly out of sleep when someone knocked on the door and probably stood up too quickly.  I don't really know what happened except that I fainted and fell hard.  I was not aware of where I was  until I was in the emergency room at Howard University Hospital.

Because of the complications of my ovarian cancer diagnosis they kept me overnight.  I received 7 stitches in my eye which during the last week has grown several shades of red, magenta, violet and deep purple.  The color changes in hue and size above and below my eye.  This has been accompanied by headaches and some dizziness and extreme fatigue.  Not fun.

The good news is that it was a really interesting conference - especially in light of recent events with Nvidia. However,  I not only found myself feeling vulnerable physically but also feeling more vulnerable about espionage in general. There is more going on than meets the eye.  

We are home now and living it day by day.  One of the mantras I live by is :  This too shall pass and I know that it is true.  I know that these physical changes in color on my face represent the healing work of God.  All will be well - EVENTUALLY.  In the meantime, I wait for my body and spirit to catch up where I am now. 

And PS - my numbers on my clinical trial are still going down.  All will be well.  

 

How I learn from the Dalai Lama in the light of following Jesus

 (I wrote this a while ago and did not realize it did not publish.  ooops)

 

I finished The Book of Joy yesterday and found it basically affirmed what I know to be true.  They may be  a practical guide of Buddhism, and  they are also affirmed by the teachings and the life of Jesus.  Jesus  taught us and gave us  the good news – the miracle and mystery of the Christian life  It is the  assurance that he is present and through the holy spirit within us always. I don’t think you get that in  Buddhism. 

The first pillar is humility that reminds me of the first principal of AA about being powerless over alcohol that our lives had become unmanageable. And that is true about living with cancer – I can’t manage it.  I can manage appointments and pills but I can’t manage the  diagnosis or the side effects, or the outcome or  other people’s reactions or my various moods.  I can only live in my reality that I DON’T KNOW!   I don’t know whether my cancer  is a test or a lesson or a random biological occurrence.  (or all three) I don’t know.

What I do know is that God is WITH ME as God was in the past and will be in the future.  I confess I look frequently  for signs of presence and they come and mostly  go.  It is often in reflection that I realize the miracles that have occurred in my journey:  I have a wonderful doctor, I have received nothing but loving care from doctors, nurses, friends and of course, family. That's just the beginning.  Right now I am in a clinical trial that is giving me more time on this earth.  And don’t know how long it will last.

His second pillar is humor and I have been blessed with a good sense of humor with my family of origin being  funny and the family I birthed  being very funny.  I also know that humor can bring people together in love or hurt them deeply.  I’ve learned that sarcasm can be the worst.  But that is not what Buddha is espousing.  “Smile and see if you can chuckle at your problem at uour shortcomings at your frailties.  “   I know I am in trouble when I take myself or John or world events too seriously.  It isn’t that life is a bowl of cherries but there is humor to be found even in everybody’s  hypocrisy and imperfections.  Especially mine.

I think acceptance is what helps me the most – but I can see why humility and humor come first.  I want to live in reality – the reality that sometimes life is hard and it is always unfair.  I like the quote from the book “In order to make the most positive contribution to this situation, I must accept the reality of its existence.”  And when things are hard to accept  - like I will be on chemo for the rest of my life – I turn to God for strength. 

The fourth pillar is forgiveness which  is very hard.  And it is a teaching  from Jesus.  I have found that it is a gift – a spiritual gift – that we can only do with God’s help. Sometimes it can take decades.  There is no formula but it begins with a desire to forgive and we are sometimes back to helplessness. But not hopelessness.  We can always  begin with a prayer:” Help me want to forgive.” We can trust  God is with us and will work on our hearts and minds.

For me gratitude begins with God and an awareness of my unique creation as God’s beloved. I can begin to see through the lens of God’s love the grace that  poured out to me in nature, through friends and family, and through nurses at my bedside.  Gratitude reminds me that my life is  enchanted if I can just see it and acknowledge it. It helps to open my heart.

The Buddha says that self compassion is prior to compassion for others.  I believe that  - like forgiveness -  compassion is a gift from God.  We know it when we have experienced it.  We are suffering and while there are those in worse shape than we are, it is important to sit with God and experience God’s unconditional  love for us.  Again it opens our hearts when see people in pain and suffering.  We recognize they are our brothers and sisters. A few days ago I was in the emergency room with John and at one point I was sitting next to a bare foot young man  with dirty unkempt hair who was accompanied by two Columbus policemen.  Of course, I didn’t know his story but I was so aware of how easy it is to judge and avoid.  I confess I did avoid by joining John as I said and say a prayer for him today.  The book said “remember it takes time to grow and learn.”  I hope I am growing in compassion with God’s help.

The final pillar is generosity.  It is the true letting go for all of us.  To live with radical generosity of our time, talent and money is a real sign of trusting God.  I used to have to talk about stewardship in the church.  My belief is that our giving is always a sign of our relationship with God – not because the bills at the church or the non-profit need to be paid.  We can be guided by God of how to  live – free and not clinging to control and safety.  We have the freedom to give, to love, to serve, to have compassion, to know we are the beloved. God is the source of our freedom.

These pillars are important and I agree with them wholeheartedly.  And it is because of my faith (relationship with God. Jesus, and the Holy Spirit) that I have the hope of living by them.

Adventures at an Infusion

 So I saw Dr. Backes and I came away with some questions about my CT Scan.  I knew that there was some questionable something  - an inflammation or new nodules in my chest xray but basically everything else was getting smaller.  I didn't realize there was something questionable in my peritoneum - thickening or something.  So I looked it up this morning and it is a big fat maybe.  More of my living in the "I don't know."  I think I will give it to God.

The other thing that happened was when I got my infusion.  I was all settled in.  I had made John and me a sandwich and gotten started on the first infusion of anti nausea medication and was all set for chemo and John went to get more snacks.  I was behind a curtain literally tied up with  tubes and I heard a crash.  And the nurses came running.  I figured he fell and he did.  I could only hear what was going on.  Finally a nurse informed me that he fell and they were getting him up.  They put him in a massage chair and he rolled past and I waved.  They wheeled him in the space adjacent but I still couldn't see him.  He had ice on his elbow and hip. The nurses were extremely solicitous and joking with him and said they were not used to taking care of a man!  They  could not help him beyond what they had done  and called the EMT who wheeled in a bed for him and asked him whether he wanted to go to the hospital.  He said NO and they left.  Crazy afternoon.

Then they started  my 30 minute final infusion.  When they checked on me a half hour later it turned out something was  wrong and it had not worked and the bag was still full.  By this time it was at the end of the day and I was left with two wonderful nurses to get it going right.  I left that day 5:30 after starting my day with PT  at 10:15.  What a day.  

All you can do is laugh.

I finished The Book of Joy by the Dalai Lama and Desmond Tutu.  The second pillar is humor and he writes:

"Smile and see if you can chuckle at your problem, at your shortcomings, at your frailties.  Try to find the humor in the situation and in your struggle.  Even if it is a very grave and serious situation, there is often some humor that can be found.  The human drama is often a comedy and laughter is the saving grace.  This ability to laugh allows us to accept life as it is, broken and imperfect, even as we aspire to a better life and a better world." 

 Sometimes all you can do is laugh.

Spending the Afternoon with my Mother

Spending the Afternoon with my Mother

After my mother died in November of 2000 I was given a box full of letters, clippings, yearbooks and various memorabilia.  Shortly thereafter I moved to Columbus from Bowling Green and I had Kacey store it for me.  This summer she returned it to me.

I spent the afternoon perusing the many letters and newspaper clippings and pictures that had been collected across the years. The box was full of her life from birth to death including some notes of  sympathy after she died. 

One woman – her college roommate has described her as a “real trooper” and a  “great example that life was meant to be lived everyday with enthusiasm.” While as a mother, I often encountered her as worrying and anxious – this as the Marge or Margy I encountered in this letters.  I always knew that she was an athlete in high school and college playing three sports every year.  What I didn’t know is that she was a thespian too performing in plays and musicals and high school and college as well as community theatre with my Dad in retirement.  She wrote song parodies throughout her life and was a strong alto in every church choir as they moved around the country for my Dad’s job.

What drew me this afternoon was to read “the letters.”  This is the first time I read them all the way through.  This was a correspondence between her and only and older brother Harry when he was serving in  the second world war. They begin in September 1943 and end in November 1944.  She was in a student at Elmira College and he was away from home.

He first served in Fort Bennington and then Colorado  in and then Europe.  He addressed his letters to her “Dearest Margy”  and  often ended them with “love to all, Harry.”

They were always upbeat and chatty letters with him sometimes teasing her about her new beau – my Dad, Wayne Gersen – and talking about the food he was eating and the movies he had seen or heard of.  Once he referenced the World Series as he tried to keep up with what has happening back home.  He wrote in appreciation for the food my grandmother sent – Melba toast and jam and candy  - and was especially thankful for the local newspaper  - The Swarthmorian – that he was sent.  Sometimes he complained about heat  or boredom or just plan homesickness.  Margy wrote about the events in her life in college – parties, visits from friends, her plays, and the movies she had been too. 

It was when he went to Europe and that the reality of the war became real.  He writes

“I wish I could tell you what I am doing or where I am , but censorship is pretty strict over here.”  And later in that same letter remarks on reading the local paper and finding out that “Johnny Ogden” was killed in action.  This was written in October 1944.  He wrote his sister three times that month and three more times in November.  He was clearly writing many people he said because he wanted to “keep the correspondence flowing.”  Letters were a lifeline back home which he truly wished to be.

Among the letters I found was a very small yellowed newspaper clipping from the Swarthmorean.  This was the headline:

Lieutenant MacMillan Killed in Germany

“Wounded previously, Lieutenant Harry S. MacMillan,23,  son of Mr. and Mrs Stanley Macmillan was killed in Germany December 15.  He was one of eight from this area listed today by their families as killed in action.”

And then Harry’s letters of course, stopped.  The next grouping of papers included many cards of condolence and a copy of the service from the church as well as the minister’s sermon which did not mention Harry by name.

The letters after that were ones about my mother’s engagement and then graduation from Elmira College.  She did mention in a letter home that she was grateful for her parent’s encouragement that she complete college – presumably after Harry’s death.

There is much more I can write about this time in her life but I can only say that – yes  - she was a trooper.  She kept going in the face of enormous grief just as she did enduring a life moving her family around the country for my Dad’s work just as she did making a life for herself after my Father’s death.  Just as she did in the face living with cancer for 8 years.  She was a trooper. 

I was blessed to be her daughter

Today

Today is Saturday game day.  The big game is on at 7:30 tonight and John is getting ready.  We went out to breakfast and picked up some beer and eggs and oranges and we will be home for the rest of the day.  We are both wearing our OSU sweatshirts and are ready for the game.

Since I have last written we took a river cruise on the Mississippi which was just perfect for us.  I loved sitting on the balcony and watching the barges and the scenery on the river and we had several tours which were enlightening.  We toured a plantation and were reminded of the reality of slavery in our country; we toured the Vickburg military sites and contemplated the horrors of the civil war and then in Memphis stood in the parking lot and observed the balcony on which Martin Luther King was assassinated.  It was sobering.  At the same time we had time to read and relax, enjoy excellent meals, illuminating lectures and wonderful live music offerings.  It was perfect and we signed up next summer to finish the river and go from St Louis to Minnesota.  

So, we are continuing to make plans to enjoy the life we have been given.  I am on a clinical trial and after four infusions everything is going well.  My numbers have gone down from 144 to 100 to 70 to 64.  If it gets under 35, I think that will constitute remission.  I don't whether that is in the cards for me, but I definitely am blessed today.  

There are always side effects that continue.  My daily companions continue to be neuropathy, constipation and fatigue.  My problem is that I often think that I have more energy than I do and have to curtail plans.  Last night we wanted to go to a concert at the church and at the last minute I realized I did not have the energy for the drive there and back and the event itself.  That is my life and I appreciate all that I am able to do - like play pickleball - after two plus years after the diagnosis.  

So, today is game day and we will watch a lot of football and enjoy the gift of today.  

Seeds of Hope

Two years ago both my son in law Brett and I had the same inspiration – that he could ride his bike in the Pelatonia raising money for medical research in my honor.

I called him and suggested that he do it for one year only and try to raise as much money as he could.  John and I would make a donation that would guarantee that he would be a “High Roller.”

He contacted his biking buddy Mike who immediately agreed to participate.  The two of them signed up and paid the $200 fee and commenced training.  Training for them meant riding their bikes three times a week through the fall and winter.  When the weather got warm they rode long distances and often two days in a row on the weekend.  They both ended up raising over $5,000 by themselves and not only rode 190 miles on the weekend but  the gravel run in the fall.  They had so much fun and felt so satisfied that they immediately began planning for Pelatonia 2026.

We are now experiencing the afterglow of that race this weekend.  Mike and Brett have  both worked hard preparing for the race and raising money for months.  Once again they each raised over $5000 and were able to be high rollers.  Last week,  tragically, Mike had a crash on his bike as they were training and broke a bone on his shoulder.  Brett had to ride without him which was a big disappointment to both of them.  This year the route changed and Brett rode 100 miles on Saturday and 65 on Sunday.

  The family supported him in force.  Marnie, Maggie, Audrey and John and I cheered for him on the route with signs and cowbells  and were able to get a quick hug and a picture.  In the afternoon we drove to Kenyon College to greet him at the end of the 100 miles.  We joined his parents, Kacey, Audrey and Mike and his wife to congratulate him.  Everyone was so proud of him for this achievement.  Sunday morning we all gathered again at New Albany High School  - his parents, siblings, son, and friends  to celebrate the end of the race.  With over seven thousand riders participating, it was a time of joy and celebration for all. 

I am two months into a new clinical trial and Saturday I received the results  of my latest CT scan that showed that there was no new cancer and that some of it was shrinking.  I loved texting   this news to Brett during this race.  This is what it is all about.

I learned from Brett that what makes this kind of race easier is to join with a group of riders.  They generally taking turns being the front rider and “drafting” for the ones behind to block the wind.  This can save 20 to 40 percent and your energy and allow you to ride faster.  Brett said to do the 100 miles solo would add a couple of hours to the ride.  There is power in community.  

I came away from this weekend appreciating all the “seeds of hope” – the  people who come together in a daunting task – to eliminate cancer as we know it.   It takes riders and donors and volunteers and the support of friends and family. Not to mention the scientists, researchers and doctors who continue to work and learn and collaborate to discover new methods of treating this disease.   I am so grateful to Brett and  Mike and the effort and sacrifice of training for this race.  The CEO of Pelatonia  said “Pelatonia was founded on the belief that together we can end cancer. “ I keep learning that the  key word is TOGETHER.