Feeling Good

Yes I am feeling good - really good.  The second week after chemo I am immuno compromised and have to wear a mask everywhere. But I am in the third week.  And I feel so good at times, I actually forget I have cancer.

Thursday was John's birthday and it was a fun day.  I gave him presents throughout the day and we went out to dinner with friends.  The best part was that I gave him - and me - a clean house.  We had the "Brazillians" come and do a deep clean of the whole house.  I had hired them when I sold my home and both of us were really impressed at the result of their labor.  We had four people come and spend three hours cleaning, polishing, sweeping everything. They did not speak any English and when I tried to communicate, I had to speak into a cell phone where my words were translated.  It was all a new experience.  The result was amazing and we still just stare at the oven, the sink, the microwave in wonder and the family room literally sparkles.  So, Happy Birthday John!

Today is an extension of his birthday as we will host friends for the first Buckeye game of the season.  This morning is a trip to our favorite place - Costco and then picking up various food - subs, soup and birthday cake for the day.  

And this week I was blessed to play pickleball three times this week.  While I don't run the way I used to, I still have some good shots and always have a good time.  All of this makes me  happy and almost forget the cancer - until Friday I said to everyone: "See you in two weeks!"  That means that the chemo is coming.

As always, the "answer" is to live in the present and enjoy the blessing of this moment and this breath.  I am trying.  And actually remembering to pray. 

PRAYING  - Mary Oliver

It doesn’t have to be the blue iris, it could be weeds in a vacant lot, 

or a few small stones; 

just pay attention, 

then patch a few words together and don’t try to make them elaborate, 

this isn’t a contest but the doorway into thanks,

 and a silence in which another voice may speak.

Ups and Downs

And desolation and consolation.  

That days after the chemo are not easy.  The first few days are supposed to be okay, but I feel a sense of tiredness that keeps increasing.  The next three days are the no energy days which invariably lead me into the spiritual state of desolation.  I looked it up on the Ignatian website and the description is me at those times:

turns in on ourselves; ever deepening spiral of negativity, makes me want to give up on things that used to be important; covers up our landmarks and signs of God's presence on the journey; drains us of energy.

So, the physical affects the mental and the spiritual state.  It is not easy to live with and afterwards, I end up disappointed in myself.  Except this really is the way it is.  I keep learning with each chemo something new.  The first time, I learned I need to take pain meds through those days.  This time, I learned I need to see people more and not just suffer alone.  There is no question that I am an extrovert and people give me energy.  Even though I am definitely not at my best during those days. 

I write this today with much, much more energy and in a state of "consolation"  Here's some of how that is described:

directs our focus outside ourselves, lifts our hearts so that we can see the joys and sorrows of others, bonds us to our human community, generates new inspiration and ideas, restores balance and refreshes our inner vision, gives us energy.

So, here I am, feeling good again and enjoying everything - my home, my family, pickleball and believing that I can do this!  I can make myself strong enough for the upcoming surgery.  And all will be well.  God is in this through the desolation into the movement of consolation.  

I talked to my spiritual director yesterday and realized that what this cancer journey has done for me - like it or not, is take much of the veneer away.  I am in a more vulnerable state than I ever have been in my life.  The normal ups and downs of life are being lived in an extreme way.   I have found fear and neediness in me that I don't like.  But here I am.  At the same time, I know in some inexplicable way that I am a beloved child of God.  That part never changes.  I just am stuck with my self - and sometimes It is hard to be Margot.

But not today.  Today I will see a friend and enjoy reading my nieces book,  go to Costco, and make dinner for my husband.  And enjoy this gift of life.  Today.

No Energy

It is hard to describe what it feels like to have no energy.  My eyes feel like they are at half mast and I just do not want to do anything.  I feel achy with a dull headache and no drive at all.  And I wait for this to pass.

I write this today when I am almost past the "crash" of the second chemo treatment.  I have a little energy today - enough to sit here and write but not enough to really do anything substantive.  Waiting for the lethargy to pass.

Several people texted me yesterday to see how I am feeling and I am honest - crashing but it will be better tomorrow.  And hoping and praying that is true.  It will be better today and it is a little bit.  Rounding the corner and waiting for it to pass.

Yesterday in the midst of my depression I listened to a podcast which encouraged me to exercise and eat healthy.  I should be eating every two hours and drinking throughout the day - Hydrate! Hydrate!Hydrate! It sounds simple it is not.  I remember watching Chuck not eating and my sister not eating and could not understand it.  Now I can.  Every bite I take is a decision and often I just don't want to!  Who would have ever believed how hard it is to force yourself to eat?  Now I know.

What I know to be true is that I want to live.  I want to get through these hard days and find my old appetite on the other side.  I am waiting for the tiredness to pass so that I can go back to being "myself" again - whoever that is.

So I sit with a cup full of nuts beside me, slowly slowly eating one at a time until finally the cup is empty. I have also finished my glass of decaf iced tea.  This is what success looks like today.

Share the Care

The last three days have been something else!  On Wednesday morning I had my second chemo.  It went much better than the first one, but it was a long day.

Thursday. John had his cataract surgery on his right eye.  Again, it went as well as it could and we actually had a pretty short day.  And Friday morning a 7:45 am appointment to get the eye checked on.  Again good news.

However, we both come away from it with more care needs in a way.  I am taking pills every day preparing for the "big crash" that is coming soon.  And John is getting eye drops 4 times a day.  It is not a big deal but it is something new to add to our life.  Plus he is not driving yet - probably after Tuesday when his eye is supposed to not be blurry. 

I find myself happy to be on the care giving end for a change, and not the care receiving.  I help him with the drops - three in his eye, three minutes apart.  We are very particular about following rules.  And I still have the energy for cooking, laundry, and other domestic tasks around the house.  Surprisingly, it all makes me feel happy.  

It is the give and take, of course, of marriage and with us, it is a pretty new marriage.  And all it does is bring us closer.  I feel immense gratitude to have a companion on this journey and so does he.

I am losing more and more hair and sometimes where a cap.  I get glimpses of myself and am startled to be reminded of my mother as she lived with ovarian cancer for eight years.  More and more I appreciate her strength and grit remembering that for four years of her journey she was a widow.  She moved herself from Southern Shores North Carolina during that time to a care center in Baltimore Maryland.  She developed new friendships, joined a church and made a life for herself still going in and out of chemo. She visited us in Ohio and her other children around the country. She even went to Hawaii and Europe. .  I wish I could talk to her now and tell her how much I admired her.  

You often hear people talk about the surprising blessings of cancer and I think this is definitely one of them   It gives me a  deeper understanding of what my mother (and brother's family and sister's family) have gone through with cancer.  At the same time a profound appreciation for the companions I have been given. .  

I look at myself and see my mother.  And trust that she is with me today.

A day at a time

There are weeks that are emotional roller coasters and this is one.

It is ironic that I look at my last post and it is about the spirit of fear and that nice Biblical quote:

God does not give us a spirit of fear - but power and love and a sound mind.

I have a sty in my eye that started Sunday, gastrointestinal issues on Monday, and then vomited Tuesday night before I was supposed to have chemo on Wednesday.  When I let the nurse know about the sty and the meds I was taking for it, she said "We'll look at it and see if you can have chemo."  Which was not good to hear.

Then after the Monday and Tuesday issues, I found that I lost my sound mind.  Instead, on Tuesday night I lay in bed praying, and worrying that THIS WAS SERIOUS and maybe I would have to have surgery soon.  And what if it reveals things are really bad?  Have I written down the songs I want at my funeral?  Yes, I even went there.  Mostly Tuesday night I lay in bed with a roiling stomach and prayed to Jesus for peace.  Peace in my body and peace in my soul.  And miraculously was able to sleep.

And, of course, nothing that I thought about came to pass on Wednesday.  I told the nurse about the gastro problems and she said - "yes, that happens."  Just treat the symptoms with nausea medication and stool softener, etc.  I saw the doctor who was very reassuring and the chemo infusion went much better than the last time.

The bonus was that my granddaughter Reagan came by in the middle of the 7 hour day and was like a ray of sunshine.  We are so proud of her and I got to hear about her plans for the rest of the year - which include graduation.  I marvel at her and Alyse who are both so drawn to the sciences when for me, it was all literature - writing and reading.  

Today John had his first cataract surgery which he kept referring to as the doctor was going to be "gouging" his eye.  He had the usual anxiety but it went as well as it could and we were back home again by 11 AM.  And today I feel great!

It really is an up and down life for me these days. I can easily given answers about not allowing the spirit of fear to take over - but of course,  I am only human.  

I thought I would include today one of the best prayers I know - The Welcome Prayer.  Like it or not, we need to welcome it all. 

The  Welcoming  Prayer  (by  Father  Thomas  Keating)  

Welcome,  welcome,  welcome.  I  welcome  everything  that  comes  to  me  today,  because  I  know  it's  for  my  healing.  I  welcome  all  thoughts,  feelings,  emotions,  persons,  situations,  and  conditions.  I  let  go  of  my  desire  for  power  and  control.  I  let  go  of  my  desire  for  affection,  esteem,  approval,  and  pleasure.  I  let  go  of  my  desire  for  survival  and  security.  I  let  go  of  my  desire  to  change  any  situation,  condition,  person  or  myself.  I  open  to  the  love  and  presence  of  God  and  God's  action  within.  Amen.

The Spirit of Fear

 I just read a little bit more of this book - Positioned.  And I got a verse for the day from 2 Timothy

God does not give us a spirit of fear - but power and love and a sound mind.

I like that - and I know about the spirit of fear.  The fear of aging, the fear of wrinkles, the fear of baldness, the fear of suffering, the fear of death.  The fear can certainly take over as I feel like I am in a constant struggle to find equilibrium. Yesterday was not a good day and the "spirit of fear" was taking over.  Not good.

 Instead of fear - I can certainly live in trust that in the middle of everything - including in the middle of my soul - there is the peace of Christ.  I really do believe it and eventually when I settle down I can experience it.

Instead of fear I can live in the reality of not knowing and stop making up stories of how it is going to be.  I don't know what is going to happen and I don't know what is happening right now within my body.  And when it does thing I don't like - I don't know whether it is a sign of something terrible or an aberration.  I don't know.

Instead of fear I can maybe remember how loved I am.  I have lots of cards and gifts that might show that to me - not to mention a family and a husband that obviously cares

this was just interrupted by a call from Ann who plays pickleball with me to tell me that she is thinking of me and in her heart knows I am going to get through this.  it is a good word and I appreciate it.

Begone - spirit of fear!

Healing

I think a lot about healing these days.  Is the chemo working?  Is it shrinking the cancer and removing it?  My mantra and "shrink and let go".  Is that how it works.

A friend gave me a book Positioned: To Receive and Maintain Your miracle by Chris Gore. When I received it, I feared it was some form of "prosperity gospel" theology but the big surprise is that as I read it, it is not.  It is, for me a reminder of God's healing presence.  The author is very specific about this:

God does not heal us because we are "good."  "You don't behave yourself into a miracle."

God does not heal us to be a witness to others

God does not heal us to give us some sort of lesson.

The healing that God offers is God's nature.  It reminds me of God grace and power and love for each - including Margot - and for all.  The nature of God is to heal and there are miracles.  

What I get in touch with as I slowly read and savor this book is my resistance to hope.  Hope is real and possible and always makes me feel vulnerable.  I went to a "support group" for people with gynecological cancer and heard a variety of stories of healing followed by cancer that returned or healing with the reality of side affects from chemo that continue.  I felt myself trying to live in "reality" - this is a long journey and who knows where it will lead?  At the same time, I read this book and remember that God is here with me and I can "rest" in God's love.

 I guess what I am writing - confessing - is that I remember that I can pray for healing.  I have - like all of us - had a life full of miracles.  Life reflection is always a gift when we can remember all the times and places and ways in which God really did show the way to life and bring healing and strength in the darkest time.  I pray for healing - that this cancer will shrink and go away and am grateful for those who are praying with me.

Here is a prayer by Ted Loder that speaks to me today

O God, complete the work you have begun in me.
Release through me
A flow of mercy and gentleness that will bring
water where there is desert,
healing where there is hurt,
peace where there is violence,
beauty where there is ugliness,
justice where there is brokenness,
beginning where there are dead-ends.
Waken in me
gratitude for my life;
love for every living think,
joy in what is human and holy,
praise for you.
Renew my faith that you are God
beyond my grasp but within my reach;
past my knowing but within my searching,
disturber of the assured, assurer of the disturbed;
destroyer of illusions, creator of dreams;
source of silence and music, sex and solitude, light and darkness, death and life.
O keeper of Promises, composer of grace,
Grant me glee in my blood, prayer in my heart, trust at my core, songs for my journey, and sense of your kingdom.

Good Days

Something has happened.  I feel good - really good and have ever since Friday.  I am right now in between the three weeks of chemo - in 8 days I go back to the James, but until then I feel pretty darn good.

So, I keep wondering what makes the difference?  It may be the result of the prayers of the many, many people who have reached out to me.  The first two weeks, I was so unsettled, I could not pray myself and have felt held and loved in so many ways.  That may be part of it.

It may be that I have been able to play pickleball twice so far.  There is something about moving my body and being back on the court that I feel like myself again - strong and ready for anything.

It may be that I have had contact with several people who have "been through it."  I got a wonderful card from Karen who is a member of the church I served in Bowling Green.  She has been through her own time with cancer and encouraged me to look for the joy in the midst of everything.  I really take that to heart.  Also I have learned that I live on a street where several people can look to their time with cancer in the past.  That truly heartens me.

It may be that I am getting good sleep.  I have started taking an anti anxiety pill (the same one my mother took!) and melatonin which really helps.  John and I are also big believers in naps and it helps.

But finally, it may be the peace comes as I learn to live in the present.  In this day there will be joy and life and I will not worry about what is coming.  I don't really know exactly what is coming, but I trust that God really does go ahead of me.

When I went to church on Sunday I was overwhelmed just singing the hymns that were a reminder to me of God's faithfulness. We sang "The Lord of the Dance" and I could not sing the last verse, I was so overcome with emotion:

"They cut me down and I lept up high

I am the life that will never, never die,

I'll live in you if you'll live in me, I am the Lord of the Dance said he.

Dance, then, wherever you may be;

I am the lord of the Dance, said he,

and I'll lead you all wherever you may be

and I'll lead you all in the dance, said he.

 

The two worlds

When I raise my head out of my own pain and worry about my personal future, I face the dissonance that we live with in what Richard Rohr calls "The two worlds."

This morning I read Richard Rohr's email from the Center for Action and Contemplation.  It was the weekly summary describing "The Reign of God."

 "There are always two worlds.  The world as it operates is power, the world as it should be is love.  The secret of the kingdom life is how we can live in both simultaneously.....God's reign is about union and communion, which means that it's also about mercy, forgiveness, nonviolence, lettering go, solidarity, service and lives of love, patience, and simplicity"  

These words speak to my soul and my aspiration of who I want to be and how I want to live.

Then I read the latest by Heather Cox Richardson about how the Trump people borrowed money from the Eqyptian President in 2016 and all the subsequent ways the Justice Department  tried to investigate and prosecute.  At some point Bill Barr just killed the investigation.  The level of corruption is horrifying.  

I choose the kingdom of love and need to find a way to believe - do I believe? - that it in any way affects this kingdom of power?  That is the wondering.

Breathe in, breathe out. Let go and trust.  And move forward into the unknown future.  Both mine and the country's.

What I am learning

1. Keep making plans.  Audrey gave me a bracelet that says those words.  Keep making plans.  It is from OHio Health - not OSU I was told.  But it is a good statement for me right now.  The big plan is that we have a family cruise in January to celebrate Marnie's 50th birthday and I want to be there.  I will be there.  Maybe in a wig, but I will be there.  Making plans

2. Look for the joy.  I got a sweet card from Karen Adams, who is part of the community at First Christian Church Bowling Green.  She has "been through it" on her cancer journey and wrote about looking for the joy of the nurses, doctors and other caregivers.  I went to have my abdoman drained yesterday and joked around with the nurses and technicians and did feel the joy and human interaction.  I appreciate all those people who made a life choice to go into medical work.  What a blessing.

3. Keep moving.  It is so easy to get into a sedentary life and I need to walk and - hopefully - play pickleball this week.  I have learned that throughout my life I have handled some of my anxiety through physical activity. There nothing like Racquet sports for that high you get when you really smack the ball and that ball these days may represent the cancer within me. 

4. The purpose of prayer.  I wrote a while ago about that phenomenon of having people pray for you - I have MANY people praying.  I realized that I really have had problems praying ever since the diagnosis and THAT's one of the purposes of those prayer chains : please pray for me because I am so full of fear at times that I can't pray for myself.  I am being held by your prayers as I try to recover my equilibrium.

5. The gift of music.  I sit outside and listen to Celine Dion sing "The Prayer" and Josh Groban sing "You raise me up" and songs by John Michael Talbot.  It is prayer that allows me to breathe in God's love and trust God's presence.  Leaning into the music and often crying about something.

And prayers and Poems.  This one was from Mary Oliver came from  Audrey - everything helps bring a little light. 

I have refused to live
locked in the orderly house of
            reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
           what’s wrong with Maybe?

You wouldn’t believe what once or
twice I have seen. I’ll just
            tell you this:
only if there are angels in your head will you
            ever, possibly, see one.