Living in Reality.

We had at least twelve inches of snow Saturday and so John and I have been spending these days at home waiting for the roads to clear.  It is 12 degrees out as I write this and so nothing is going to melt soon.  The plows are doing their job and we wait.

On Sunday night I suggested to him that we might try to shovel our walkway on Monday.  Monday morning he said NO.  He reminded me that I am wearing a heart monitor and I have cancer and he has some issues with his heart too and he has cancer.  He didn't mention that we were old.  But I had sort of forgotten that.  There is a part of me that thinks I am still 35  - just moving a little slower.  So we did not.

Today we had a dinner at Easton on our calendar with Kacey and Brett and Brett's partner in the Pellatonia to celebrate their rides and fundraising and to plan for the next one.  John drove to Costco yesterday - the parking lot was bone dry, he said.  And he assumed we would go. Kacey texted me and said it was up to us.  And then I thought about it - driving at night and ice.  Ice while driving and ice while walking and I said NO.  We have to live in reality as hard as it is at the time.  

I have learned that aging is a series of losses - losing people, losing energy,  and after retirement losing your identity.  Having cancer  is more losses. I am aware that my kids have changed roles with me in being caretakers at times.  Truly, like many people, I would rather be the caretaker than the one cared for.  I have also learned that acknowledging - not resisting - the changes makes life easier for everyone.   

So, living in reality is hard - it involves being brutally honest with yourself, taking the time to grieve (because it is all a loss!) and moving into the new reality.  The reality where God is still guiding and using  you to shine your light in a different way perhaps - but sometimes in a more powerful way. 

Life is hard.  God is good.  All the time. 

 

 

 

 

 

Why I Go to Church

(This is what I wrote for my Readers and Writers Group that meets monthly.  It is similar to my last post.)  

 

It is a new year and I always enter into the idea of newness and starting over and beginning again. I have my resolutions for this year:

1.      Read Daily

2.      Write Daily

3.      Play a game with John (or someone) every day

At the same time I have an awareness of the both the mystery of the unknown and the predictable routines of ordinary life.  It’s a new year and yet I am getting older and more forgetful and living with fatigue.  It’s a new year and yet I will still have chemo every three weeks, it’s a new year and I will still have my blood tested regularly and wait in suspense as the effectiveness of the chemo versus cancer will be revealed. These  mundane realities can certainly overshadow any thought about mystery and miracles and even joy.

But then what breaks the cycle of what I will call faux optimism is what happens to me at church.  I heard words in the opening prayer that stirred something in my soul:

Open us to a new awakening, a new beginning,

Where we look through the lens of the goodness of your creation,

Experiencing all possibilities in You

Turn us away from the negative lens and lead us to the light…”

And then I heard the sermon that broke me open.  Rev. Becky  spoke about how God is always communicating with us – not only in church but also in nature.  Not a new idea and certainly I could have preached it myself.  But this morning I heard her talk about the stars that the Wise men/astrologers were seeking and she spoke of that GPS we have within us seeking something.  And that there is God doing something new with us – bringing light into the darkest places. Bringing change, healing, and love.    And we need to   come and see.

So I came away from the service with a sense of expectancy. God is potentially doing something new – with me, with you, and with everyone.

And so I added a fourth resolution.  Come and see that I am here with you making all things new.   Every Day

HAPPY NEW YEAR

A New Beginning

The prayer of invocation at church today:

 

Almighty God

Your Spirit swept over the waters of creation;

Call us away from the distractions of the world.

to experience what You are doing now, in us, and through us, and in our world.

Open us to a new awakening, a new beginning.

where we look through the lens of the goodness of Your creation

experience all possibilities in YOU

Turn us away from the negative lens and lead us to the light

In the name of Jesus, who leads us into life, we pray.

Amen

There is something about the new year that gives me hope.  I recognize how my faith is so tied to my resilience.  Because I do believe that God comes and comes and comes and comes into our lives and brings something new.  And when God comes God brings light that helps us see - how loved we are,the needs around us, and the evil that is always present as well.  God comes and can bring change to us and through us.

We have been caught in a mire of hospital appointments for the last three months.  John has completed his last radiation after 20 days and now starts with weekly infusions.  The first one was Wednesday,  It took over six hours and he had a reaction at home afterward.  Our New Years Eve was very quiet - except for the groans about the Buckeyes losing to Miami.   

And so I trust in the new beginning that turning the page on 2025 can bring.  I have three "resolutions" this year.  1. I want to read every day

                 2. I want to write every day

                 3. I want to play a game with John  - and others, I hope - every day.

I started the year finished The Correspondent which was wonderful.  It was well written and touched on themes of guilt, grace, love, marriage, aging and friendship.  I could feel myself going deeper into my own feelings as the book revealed the life of Sybil, who communicated with hand written letters.  It made me want to write more by hand, but I am so much faster on the computer.  AND my neuropathy causes issues and pain if I write for longer than ten minutes.  Now I am reading The Widow by John Grisham - not nearly as deep  but a fun page turner.  I have kept it up for 4 days so far and it has already made a subtle difference in me - a sense of peace and almost wonder.  

I used to write daily to my friend Susan in Arizona and I have really fallen away from the practice.  I was writing once a week if that. (Susan was my college roommate over 50 years ago) Over 10 years ago we went to a workshop with Julia Cameron who wrote The Artist's Way. She encouraged us to write morning pages as " three pages of longhand, stream of consciousness writing,done first thing in the morning" For us these are our daily musings on the events of our lives, communities and the world. Often it is a time to "vomit" out what is happening in the messiness and the marvel of life.  Anyway, I am back to the daily practice and discovering how important it is to remember, review, reflect and write - on a daily basis.

Finally I am just a great believer in playing games together.  I play my solo games - wordle, spelling bee, word blossom and betweenie and they wake my brain up.  But playing a game with another really does connect you and enables  communication.  I have had my best conversations with daughters and grandkids around a game table.  Also, I can't remember a time when I played a game and didn't laugh. So this resolution for 2026 - to play games daily with John and more with others is good for my soul. 

So this year begins with questions about the future which will be answered eventually.  In the meantime, I plan to read more, write daily, and play games more AND be on the lookout for the ways God is revealing Godself to me.

 

End with a Poem by Mary Oliver

 

"Every morning
the world
is created.
Under the orange
sticks of the sun
the heaped
ashes of the night
turn into leaves again"

 

 

A Milestone

Today John rang the bell at the radiation department at the James Hospital.  He completed twenty days of radiation  - which has meant trekking to the James five days a week for four weeks.  It has been a challenge!  I took a picture of him in front of the bell that said:

"Ring this bell

three times well

to celebrate this day

 

My course is run

My work is done

And I'm on my way"

We are on our way but the work is not done yet.  He still will have four weeks of infusions in the hope that the B Cell Lymphoma is being eliminated.  Let us hope. 

I continue with my regimen of chemo every three weeks and now - for the last six months - my numbers have been slowly coming down.  It started at 400 and at the last blood test it was 60!   So at the end of this up and down year, I feel pretty positive that I am going to be around for a while.  The chemo, by the way, does not affect my hair - which is looking pretty good these days -  or my pickleball. I truly have much to be grateful for. 

As I look back on the hard parts of this year - John's fall and 28 day stay in the hospital, my surgery, my chemo and his diagnosis of his B Cell lymphoma - I realize it has been a lot!  At the same time, we have  done it, but not alone.  Our friends rallied to us especially during the time of my surgery and John's fall and my daughters were there for me every day I was in the hospital. We have had innumerable people provide us with food and other help and prayers galore.  We have been blessed through it all.

I know the work of the trips to the James for radiation is done, but the work of living with cancer and all of the ramifications of it will continue.  I end this year in awe and gratitude for the healing that we have experienced and the love that we have received.  

My cousin Pam ended her Christmas Card with this; "Lots of Tricks in 2026!" YES!!!! 

An Ode to my Mother

 

I flew to Baltimore that last Sunday  that I spent with you

And I remember your eyes looking up in a corner of the room

Were you seeing  the angels?

Were they helping you to  Prepare  to leave

My brothers left me alone with you

And I read from the gospel of John

Telling you that I had read this to Dad at the end

And you said I KNOW

IN MY FATHERS HOUSE THERE ARE MANY ROOMS

I GO TO PREPARE A PLACE FOR YOU

We both found comfort in those familiar words

I  was at peace the next morning when I witnessed your last breath

I held my brothers hands as I prayed over your body

 NOw 25 years later I ponder that time and those words

Was there a place prepared for you? For Dad?

What is that place and where are you now?

Are you with Dad? Are you with Ellen? Are you with Jesus?

Are you the one that is strengthening me as I face the the challenge of the cancer that ended your life

Are you reminding me that I don’t go through this alone?

You went ahead and prepared the way

You showed that we just do what we have to do

Live with chemo, live with uncertainty, 

losing hair, wearing wigs, living with fatigue, constipation, neuropathy

The ca 125 numbers that go up and down and up again

Living with hope and despair and trusting in the next chemo or clinical trial

I wish I had understood how heroic you were going through it all miles from family especially after dad died

I wish I had known what questions to ask

I wish I had listened more

I hope that you know how often I think of you with pride and gratitude

I am your daughter and so much of my grit and sense of responsibility comes from you.

Do you hear me? Do you Feel my love? I hope so

And there's always something else. Play it again Sam

It seems like John and I are taking turns.  I am doing well as my "numbers" keep dropping.  My CA 125 is down to 71 from 92 last time.  The chemo every three weeks is just a part of my life at this point.  I am pretty tired for a couple days afterward, but otherwise I am living my best life. 

John fell at Costco on Tuesday afternoon while trying to lift bottles of water.  He landed face first on concrete and miraculously did not have a brain bleed or broken teeth or nose or anything like that.  We went to the emergency room and he did and does have a lot of bruising.  He really looks like a raccoon with purple circling his eyes.  We went to his doctor later in the week who told him he looks bad and it will last for about 4 weeks!  Happy Thanksgiving!

 Meanwhile this weekend he is preparing for a colonoscopy Monday to determine if the BCell Lymphoma is in his system and not just on his forehead.  Tuesday he is scheduled to begin four weeks of daily radiation on his forehead.  It is not fun to be him right now.

This means daily trips - Monday through Friday - to the James hospital for both of us.  Last January I was doing that visiting him during the four weeks he was in the hospital following the brain bleed.  

 Meanwhile we are slogging through this.  Right now he is out to lunch with a friend whom he didn't warn about his colorful face.  Should be interesting.  

I am just grateful for the ongoing blessings of my life - I get to play pickleball, we enjoy watching OSU Football together every Saturday, I continue to do a little spiritual direction and we both look forward to Thanksgiving at Hocking Hills with the whole family.  

There's always something else - something challenging and something comforting, something to get through and something to look forward to.  There's always something else.

 Life really is an adventure. 

What a difference a year makes!

This time a year ago I was recovering from surgery.  The surgery happened in mid October.  It was supposed to be seven hours long - including a total hyterectomy and an application of warm chemo after the surgery.  It lasted less than an hour as the cancer was too extensive and the doctor said I needed more chemo.

In the aftermath I felt pretty hopeless.  I was also potentially looking at having an ileostomy which every time I talked about it at first I would cry.  I eventually saw a doctor who explained to me and I prepared myself emotionally for it.  Thank God it didn't have to happen.  Thank God.

Now, a year later I have had the second surgery which was successful and I think 18 chemo infusions.  I now have a port which makes that easier.  I also - for the last five months have watched my "numbers" drop from 400 to 92 which is good.  I am now on elahare which as a potential side effect of blurry vision - which I don't have.  The only problem is the neuropathy which so far is manageable.  That is, I can still play pickleball.

 I had given up teaching a Bible study at church last winter because of the surgery and that has been resumed.  I was able to go on vacation to North Carolina twice to see my brothers and to Michigan with the girls and grandkids.  

And so, I live in gratitude aware of how far I have come and the blessings that have been mine throughout a difficult year.  At this point everything seems so much better.  My beloved Dr. Backes said that she was in a conference in Germany in which they are clearly devoloping more  and better chemos.  So, when and if this Elahare does not work there will be other options.  A year ago my future seemed much less bright than it does now.  

What I have learned from this year is really three things:

1. I do not know.  I do not know what the future is going to bring.  Both Good and Bad

2.  I need to enjoy and savor the blessings of this day.  Because I do not know what the future brings

3.  All  will ultimately be well.

These are hardly new ideas - but I share them anyway.

God is good - all the time!