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! 

There's always something else

Last week the "something else" was a minor surgery to put a stent in my kidney.  It turns out there is a stenosis in my kidney which contributes to my ongoing issue with high blood pressure.  (I currently take five medications for it daily).  I was somewhat awake for the procedure but it was relatively painless and as always, I had a caring group of nurses and a wonderful doctor.  I had to spend the night because of my age which I welcomed.  I was ready to go home Saturday morning.  These is some discomfort when I try to stand but otherwise, the healing is happening.  My blood pressure has gone down which is a good thing.  The bad thing is I can't play pickleball for a week. So I am looking forward to Friday.

The good news is that my CA 125 numbers keep going down.  The last reading was 110 and I hope it will continue to drop.  Next Monday I get my blood work done which gives me that news and Wednesday I will have my 17th chemo.  I have always assumed I would be on chemo for the rest of my life - but who knows?

And so it is the side effects that are causing problems more than the cancer itself.   I now slather my feet with Voltaren which really has helped with the neuropathy/arthritis in my feet.  Sometimes I think one of the miracles in my life is that I am still ABLE to play pickleball. 

And then there are the usual issues of aging.  I am finally going to get hearing aids.  I find I am constantly asking:  what did you say? and of course the TV has to be pretty loud for me.  That is another problem that is being solved. 

My minister gave her latest sermon on gratitude and always I try to remember the myriad blessings of my life.  We had a family party  to celebrate Marnie's new job at "Smash Court" ,  is a game place and a restaurant.  I got to play shuffleboard with John and watch my kids and grandkids play and talk and be together.  This is always going to be at the top of any bucket list I might have.  

We have a beautiful fall and I am blessed to wake up every morning to a view of Hoover Reservoir and the changing trees.  

Most especially I reflect on the goodness of the caregivers - the nurses, technicians and doctors who are taking care of me.  I actually look forward to the chemo in one sense, because I get to be with these wonderful people.

So, there is always something else that can challenge me, but mostly my life is filled with joy and goodness.  

My 15th chemo

And my 5th one with Elahare which so far seems to be working.  My numbers went down again - from 216 to 146.  This is a very good thing.  

So, chemo is becoming very routine.  This time I did not the see the doctor ahead of time because she was out of town - we had a televisit yesterday.  So, the whole thing took three hours.  At this point John has his routine here - he gets his chair settled and in front of the TV and turns on CNBC.  At 9:30 we watch the market open and he is happy because the "futures" are up - whatever that means.  I now have a port which saves time - the nurse no longer has to go through the search for a usuable vein and I get to use both of my hands for my I Pad so I can easily read, do puzzles and send texts.  It is all the new norm for us every three weeks.  I am grateful but a little tired today.

I have had a lot of support from friends and family on this cancer journey and it has made a difference.  There is a group I have not written about that has also been important to - The GO group - a support group for women with ovarian cancer.  I wrote about them for the readers and writers salon and will share it with you. 

 

An Unusual Tribe

I have a new tribe in my life that I have found to be important and very supportive.  What is strange about them is that I have yet to meet any of the women in person.  It is the Gynocological Cancer Support Group.  We meet on zoom once a month and also communicate through a what’s app text chain.  It is surprising to me that these discussions have been so lifegiving and informative.

On our monthly meeting on last Thursday  I connected with eight women who are living with cancer and our facilitator Trinh.  This month we did not have a speaker and so we spent the hour filling each other in on where we each are on the journey.  I noticed that five of us had short hair and are probably coming  back from the hairloss experience.  We also have shared our common issues – fatigue, constipation and neuropathy.  Each have our own unique path in trying to live with and possibly heal from this terrible disease.

One woman talked about how her numbers we going up for the CA 125.  She has a recurrence of ascites which is excess abdominal fluid caused by cancer.  I had that at the very beginning of my diagnosis.  I had 12 pounds of fluid drained from my stomach.  She is emotional relating her fears.  We have all been there.

Another reported on the side effects from her new chemo.  She had been on Elahare which is working for me so far and it didn’t work for her.  Now she has flu like symptoms for one week following her infusion.

Another was diagnosed over 12 years ago and has been on and off with chemo ever since.  Sjue gave a testimonial to the power of prayer,  After she was anointed and prayed over, half of her cancer disappeared.  And I listen to her and wonder if I am praying enough.

Amanda, who is in her late thirties was not present.  She has been working through her bucket list.  Last year on her birthday she was in Alaska – this year she is in Hawaii. My bucket list is not about places but people.  I want to be with the people I love and have experiences with them like family vacations and hootenannies.  Amanda recently celebrated her 100^th chemo infusion.  I will have my fifteenth on Wednesday.

All these check ins remind me that I am not the only one on this often confusing and difficult journey.  All of us know the suspense every three weeks of having a blood test or a pet scan which will reveal what is happening with within our bodies.  Is the disease growing or shrinking?

We also share the specter of what happens when the time comes that the chemo stops working and no more clinical trials are available.  There are three that passed away this past year and it is a reminder for all of us.  The sense of foreboding in unavoidable.

However, the shared reality is that life can be good and we can seek joy and beauty. 

Amanda is an inspiration to all with her bucket list and indomitable spirit.  In our text chain women frequently post pictures of the beautiful places they have visited.  We also share articles about cancer and updates about our struggles.  I remember posting with Amanda when she was in the emergency room at 4 in the morning.  I also remember following my second surgery posting this myself: “I am in the hospital following surgery, in pain and wanting to give up.”  I am allowed to be vulnerable and honest during the dark times. And the responses were compassionate and inspiring and real.

So this new tribe has been a gift.  I know that I have more support systems than many of the women but this offer me an opportunity to live in reality about the ups and downs of living with this disease and the blessing of having some women in my life who are going before me and showing me what courage and good humor and connection can offer us all.

There's always something

Good and bad

First the good - my numbers are down for the second month in a row which makes me happy.  I had my 14th chemo on Wednesday and tried out the new port and it works great.  I enables me to have two hands free for the important work of reading a book and playing games on my kindle during the 2 hours I am there.  

Also I saw the eye doctor and so far I am not having the side effect of blurred vision.  So far to good.

Also I feel "prayed up" or spiritually healthy.  Tuesday Kim gave me a reiki treatment and it enabled me to feel peaceful going in to the chemo.  Last night John and I went to our first "sound bath" which was a spiritual experience being led with a guided meditation followed by about 45 minutes of various musical instruments.  We were comfortable in the darkened candlelit room and it was peaceful and I experienced God's love and presence in it.  I always need this.

Since I last wrote I did something that was on my bucket list.  I didn't go anywhere but hosted about 16 people at a "Hootenanny" led by my dear friend Mary Wood.  After an Italian dinner we sang camp songs, hymns, folk songs and even a little Frank Sinatra.  We ended with one of my favorite hymns - It is well with my soul.  That is true - it was well for my soul!

And now the bad - I have been having  an issue with sleeping due to my propensity to JERK right before I go to sleep which keeps me awake.  And actually in pain.  Wednesday night I only slept for two hours - or it felt like it.  I called the doctor I got a prescription for trazadone which she had suggested on Wednesday when I got chemo.  

The trazadone worked in that I slept.  However, I was so tired I felt like I would never wake up.  I played pickleball for the first time in two weeks and pushed myself to play through the fatigue.  Amazingly, I did pretty well - I always say that if I don't have to move my body and the ball comes to me, I am pretty good.  But underneath I struggled all morning.

I have since figured this out.  I now take a half pill and it solves the sleeping problem and the  waking up part too.  It seems like this disease leads to complications and problems that need to be solved along the way.  Next week I see a cardiologist because I have a stenosis in my kidney.  I don't know where that will lead.  But there's always something.  Bad and good.

Sermon on Martha and Mary - The better part

Three weeks ago Audrey and I did another mother daughter sermon - this one on the story of Martha and Mary which has been really seminal in my life.  I thought I would share my portion

 

And Jesus says – Mary has chosen the better part

 

What does this mean?  This is a story about hospitality.  About welcoming the friend and the stranger and the savior.  Martha does that.  She welcomes him and does what a good hostess does – prepares a meal for him and probably for his disciples. That is hospitality.  That was clearly the cultural model of the day.

What this text shows us is one more way that Jesus defies our expections of what is needed.  Surprises us! This man is always showing and teaching a new way of living – he extols the compassion of the Samaritan (of all people) , he eats with unclean people, he tells us to love our enemies

There is more to hospitality that feeding people – as stressful as that can be.  In fact, he tells poor Martha that her efforts are misguided.

Mary has chosen the better part

The text tells us: she  “ sat at Jesus’s^[b] feet and listened to what he was saying.”  She listens. Paul Tillich has written “The first duty of love is to listen”   She welcomes him and shows her love by listening.  She has recognized in Jesus a person who lives in freedom from fear and anxiety. 

Hospitality in the kingdom of God is an invitation to do more than feed the body  - it is an invitation to feed the soul .  And that happens when we are with God – when we listen.  When we have a holy encounter

Martha is an example of what happens when our souls are hungry

Anger resentment distraction  - people pleasing – caught in a vise – and something is wrong – stressed and distressed - something is missing even though we are doing what we are supposed to be doing. 

Jesus has asserted that Mary has found the better way –

And it begins with listening and receiving.  That is primary.  Serving comes out of the relationship with God.

When we live our life like Martha – consumed with tasks and accomplishment – it easy to fall into the illusion that it is all up to us.  We can become a member of the club that says – when all else fails – Pray

But until then it is all up to me.  After all doesn’t it say in the Bible “God helps those who help themselves?”  Uh NO

Mary has chosen the better part – Listening to the words – putting herself in the presence of Jesus.  Hearing the gospel message of love and grace.

I said – I have been and I am Martha.  I can become distracted and worried about many things.  While my working years are over and I no longer have the stress of deadlines and meeting other people’s need in church AND I still can get distracted with worry.  And – like you – I have many things to worry about.

I was diagnosed with ovarian cancer a year ago and I have experienced lots of reasons to worry.  I now worry about my blood pressure, my low sodium diet and whether this latest chemo is working  I can worry about what is going to happen in the futures.  And, of course I do.

I have learned that I can veer between two positions – I don’t know what is going to happen.  And I do know.  And It won’t be good. 

It was only when my spiritual director invited me into prayer – a time of silence and listening for God that I heard this – All with be well.  I am with you – even unto the ends of the earth.

That was a moment – a peaceful faithful moment when I experienced the better way.  I would like to tell you that I live in that peace and reassurance.  But you know that is not true – I am human. 

Until I remember to listen – not only in prayer alone  but  I listen as the followers of Jesus share their faith and then I remember. God is here and all will be well.     Otherwise the fear and anxiety will overtake me. 

This is a profound story with many layers to explore – but the overarching message is that Jesus shows us the better way

Making a space in our lives – spending time with God’s word – worshipping with God’s people, praying being still

Listening