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.

Challenges and Hope

There is good news to share.  My numbers have gone down which means the clinical trial is doing something positive  My CA 125 went from 144 to 104 which is quite a drop.  Praise the Lord and the research team that has developed this chemo.  We never how long this will last but it certainly gives me hope.  

The challenge is the fatigue that is part of the side effects.  As I write this I feel a cloak of tiredness that I live with.  It is hard to get my energy going to even think about doing anyrhing.  We were blessed to go to Bald Head Island for a beach vacation with my brothers and their wives and Audrey and Nathalie.  Just going to the beach was effortful for me and I was not able to go into the ocean.  That was a disappointment but we still enjoyed time together talking, singing and playing games.  I notice the changes in me and have grown into a kind of acceptance of it.  

So this weekend we are renting a big cabin in Hocking Hills for a long weekend with my daughters and most of my grandchildren.  Last year Ohio Health had a slogan for their cancer program:  Keep Making Plans.  We make plans and usually are able to do things like take trips and of course, pickleball.

The other plan is to preach with Audrey August 9th at Northwest Christian Church.  It will do me good to dig into scripture and get to share a pulpit with her.  The blessings keep coming.

So, my life involves a lot more resting and still a sense of equanimity.  All will be well and it is good to be alive. 

Clinical Trial

I am beginning my first clinical trial since I have been on this cancer journey.  A year ago we talked about one and then I started on Elahare which worked well for about 9 months.  The numbers have been going up for the last three months and it is time for something new.

I had a CT scan a couple of weeks ago and it revealed cancer in my lungs which has made me eligible for a clinical trial - because the doctor's need to SEE the cancer somewhere in my body in order to measure the efficacy of the treatments.  So, after some testing - testing tissue, an ecocardiogram an eye test - I have been accepted.

Tomorrow morning I receive my first infusion.  Afterwards I have to wait around for three hours to then take another blood test.  I will do this every three or four weeks depending upon my schedule.  It all makes me nervous.  I look at the side effects and I wonder what mine will be.  I have been very lucky so far, and this is a new procedure.  I say that I live in the land of "I don't know" and the last few weeks have been very challenging with the waiting and not knowing.

At the same time spring - and the hopes and visions of new life - are all around me.  This year John did not put his white electric Christmas tree down off the porch.  I mother cardinal decided it was the perfect place to build a nest and we wake up frequently to the vision of her sitting on the nest.  Several times I have seen the baby bird with his mouth open waiting for Mom to feed him.  And sometimes the Dad cardinal makes an appearance.  It is an unlikely place to have a nest and it is a perfect symbol for me of 

" God will make a way where there seems to be no way. He works in ways we cannot see, He will make a way for me.""

or this quote from Isaiah:   Isaiah 43:19 (NIV): "See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.

So God is always doing a new thing - a new drug, a new trial, a new hope.  

Let it be so. 

Breathing Space

In contemporary society our Adversary majors in three things: noise, hurry, and crowds. If he can keep us engaged in 'muchness' and 'manyness,' he will rest satisfied."

This is a quote from Richard Foster that I have remembered for over thirty years.  I have not lived it for much of my life - I have surrounded my self with noise, people, multitasking, and a lot of rushing around. I bought into the "cult of speed" and constant productivity.

I think of my life since I had children and was working at the church and I was literally always on the go. I had few margins in my life and went from one thing - a meeting, a funeral, a lunch, home to see kids and throw a meal together and often another meeting.  There was little time to breathe - let alone anticipate or reflect.  That is the life of most of us in those years - busy, busy, busy.

I also have a clear memory of being at a clergy meeting 35 years ago with our regional minister, Howard Ratcliff and one young pastor like me was complaining about how much he had to do  - what with church, community, and family responsibilities. Howard very wisely said: "Who makes your schedule?"  Those words also stayed with me - every time I have been in a time crunch trying to do too much at once I have heard "Who makes your schedule?"

Now that I am retired  that is no longer the case.  Sometimes in retirement there is too little to do and you just want to fill your time.  I have learned that we do get addicted to the stress of the hurry - and we often try to replicate it in retirement.  It has taken me a long time to truly get it.

Yesterday I hosted the my monthly writer's group in our home.  And I had time to just enjoy one of my favorite things - preparing for a party. Cleaning,  picking the dishes for the table, making brownies, and just setting things up.  I put music on and took my time with everything.  That hardly seems noteworthy, except I have a tendency to rush and hurry through task - literally for no good reason.  I purposely had to keep telling myself to slow down and savor.  Take your time.

Not a new thought- but I am still learning.  And for those of you in the working world rushing around I remind you to ask yourself - "Who makes your schedule?" 

 

 

 Fire

 

What makes a fire burn

is space between the logs,

a breathing space.

Too much of a good thing,

too many logs

packed in too tight

can douse the flames

almost as surely

as a pail of water would.

So building fires

requires attention

to the spaces in between,

as much as to the wood.

When we are able to build

open spaces

in the same way

we have learned

to pile on the logs,

then we can come to see how

it is fuel, and absence of the fuel

together, that make fire possible

We only need to lay a log

lightly from time to time.

A fire

grows

simply because the space is there,

with openings

in which the flame

that knows just how it wants to burn

can find its way.

    Judy Brown

I have Energy

Living in I DON'T KNOW LAND

Living in I DON’T KNOW

Since I was diagnosed with cancer I have been living in what I call I DON’T KNOW LAND.   It is not easy.  I have a few mottos I live by and one of them has been:  “Anxiety is caused by not enough information.”  When you live in I DON’T KNOW LAND you actually get used to this reality.  You don’t know and you don’t get to know.  At the same time it is helpful for me to express the myriad things I don’t know right now.

One of the things I don’t know is where this cancer came from.  How long I had it.  Did I miss some red flags and would it have made a difference.  When I was gaining weight in my abdomen and thought I was just getting fat instead of filled with Ascites, would it improved my chances if I had visited the doctor?  I don’t know.

Another thing I don’t know is about the efficacy of the chemo that is being used on me.  I get a glimpse because every three weeks I get blood work that includes a CA 125 test which shows the amount of activity of the cancer.  When the numbers were going down I didn’t know how far they would fall and now that they are going up – I don’t know how far they will will go up.

I don’t know at what point Dr. Backes is going to say – this chemo is not working and we are going to try something new.  I have  imaging next week to find if they can “see” the cancer.  That would be a good thing, because that makes me eligible for a clinical trial.  Clinical trials require visible cancers so that they can see if they work. My cancer is small and has been described as “couscous” as opposed to a large tumor.  I don’t know what will happen if I am unable to have these trials.

I don’t know about the side effects that I am currently experiencing and that are to come with a new chemo.  Currently I have neuropathy on my feet and my fingers and constipation and high blood pressure.  This weekend I have been extremely tired, coughing  and I vomited Sunday morning at breakfast at Glen Laural. (It was a little embarrassing).  Are these side effects of the Avastin that has been added to the Elahare in the last two months? Are these  caused by the cancer itself?  I don’t know.

And of course, I celebrate my  77^th birthday next week and I wonder if this will be my last one or if I will have two or three or five or ten to come?   I don’t know.

As I write this I realize that sometimes I hold these questions lightly – knowing they are there and essentially unknowable; and sometimes they weigh heavily on me.  They do not cause a sense of anxiety but it’s more like dread and foreboding.  They are always in the background.

What I can control is what is in the foreground.  I live in a house in the woods on the reservoir and daily I get to reflect on the beauty and singularity of each day.  I have been blessed with a long and meaningful  life and the blessings of a good marriage, a loving family and supportive friends. 

And there is my faith that grounds me.  I do  know myself to be a beloved child of a loving God and I have assurance that while I do not know what happens at the end – it will be a wonderful surprise. 

I have today and I get to embrace it.  That much I know.