Falling Down and Getting Up

This is the book that I just ordered and started reading.  Audrey had recommended Mark Nepo and I thought it was time to try to focus myself.  The title is: Falling Down and Getting Up: Discovering your Inner Resilience and Strength.  That is where I am.  I actually am rediscovering my resilience - finally.

He writes this: "A spiritual warrior is one who remains committed to the removal of confusion within us and between us.  In truth, healing often begins by removing what's in the way within us, while justice often begins by removing what's in the way between us."

One of the questions for reflection was to describe a confusion that exists within you and how you might begin to clear that confusion.

I believe that in the last week or so, I have greater clarity about my cancer journey.  At my peer group on Thursday I was able to put into words what is happening within me.  Surprisingly, the whole quest for healing has been a source of confusion.  I pray and I know that others pray for my healing.  Remove this cancer so that I might "get my life back."  At the same time, I believe that the healing is random.  I don't deserve it - nobody "deserves" healing.  We receive it as grace.  So I pray and wonder about everything.

What I now understand is that regardless of "healing" - (removal of cancer kind of healing) - God is still at work reforming me and strengthening me and deepening my faith and my love.  It has been six months and I have experienced "shifts" within me along the way.  This week, Joanna, from my church,  came to give me "pastoral  care" and I was just able to sit and tell the story of my life since July 4th.  In the telling of the story I recognized the many ways in which I have been blessed and graced by God.  It was such a blessing to just be able to see it and say it.  This is in the midst of what feels like consistent bad news - losing my hair, having surgery, extensive cancer, concerns about the aftermath of the coming surgery etc.

So, this morning I wrote in my journal about how I would now describe the confusion within me and it is this: living with the inconsistencies - my own inconsistencies.  I move between faith and fear and while this morning I am filled with gratitude and trust - who knows how it will be next week after chemo.  I fall down and then I get up again.  

This is what I wrote today -   I know that:

 -  As hard as it is, Living in the present is the key

 -  God will ultimately  give me what I need

 - I need to acknowledge my fear and doubt as it comes

 - I need to forgive myself for being weak and afraid

- Ultimately I am resilient.

 - It is a lonely journey and yet it is communal.

 - The support group reminds me that other women are experiencing the devastation, degradation and losses that ovarian cancer brings and still are able to embrace life.

 - I live in gratitude for all that I have experienced in my life:  Having children I adore, falling in love, a fulfilling career and deep friendships. 

I am getting UP this morning.  I am resilient. I am a warrior.

Becoming Something New

This morning I read Richard Rohr's devotional and was stopped in my tracks.  The meditation by Ilia Delio spoke to my soul.  The line : "For we shall become something new together."

This journey with cancer has been difficult and it has changed my prayer life.  For years I woke up and read a morning devotion and prayed and wrote in a journal.  That practice ended when I was diagnosed and I have felt like I have been floating and ungrounded but still resisted.  My theology is clear and has not changed:  I believe that God is love and God is with us always - within and without.  God is guiding, strengthening and healing.  I never ask - why me or expect that I deserve a life free of suffering.  God is here and God is mystery.  This reading is exactly on point for where my faith has evolved to over the years.

The difference is my felt experience.  I have been numb and distracted and scared.  At the same time I believe  - in my head - that God is with me and I have felt greatly supported by the love expressed by so many people over these months.  I now know that the prayers of others can make a real difference.  You pray for me when I can't or won't pray for myself. And in the mystery of God's love, it helps me.

However to become something new is to relinquish the old.  And that is what I don't want to do.  I just want to be "back to normal."  Back to having energy, and hair, and a fuller life.  There is something new that God has for me.   I write this blog and I do ruminate.  I want to have a record of this process of becoming - this infinitesimal process of letting go and what was and who I was and trusting the "something new" that I am becoming.

This truly is a cancer "Journey" and right now I am experiencing the season of Advent - waiting in the darkness for the new life that is coming.  May I trust it.

The Christic  

I am looking at a tree, but I see such astounding beauty and  
graciousness, the tree must be You, O God, 
I look at the wild weeds playing across the fields, and their 
wild joyful freedom speaks to me of You, O God. 
Yesterday, I saw a child crying alone on a busy corner, and  
the tears were real, and I thought, you must be crying, O God. 
God, you are the mystery within every leaf and grain of sand, 
in every face, young and old, you are the light and beauty  
of every person.  
You are Love itself.  
Will we ever learn our true meaning, our true identity?  
Will we ever really know that we humans are created for  
love?  
For it is love alone that moves the sun and stars 
and everything in between.  

We are trying too hard to find You, but You are already here,  
We are seeking life without You, but You are already within,  
Our heads are in the sand, our eyes are blinded by darkness,  
our minds are disoriented in our desperate search 
for meaning.  
Because You are not what we think You are:  
You are mystery.  
You are here and You are not, 
You are me and You are not,  
You are now and You are not, 
You are what we will become.  
You are the in-between mystery 
The infinite potential of infinite love,  
And it is not yet clear what You shall be,  
For we shall become something new together.  

 

More of the same

I have not written for a while and much as happened and still it is the same.

The day before Thanksgiving I had a chemo infusion and then John and I drove to Camp Christian where we rented the lodge for three days.  We had dinner with the family and played games and drove home.

The next day, Thanksgiving, we drove back.  We had a wonderful breakfast with everyone followed by more games and then the big feast.  After the feast we had our first annual - will there be a second?) family talent show.  What fun!  All three girls sang separately - Kacey a Taylor Swift song, Marnie, a duet with Erik and Audrey a folk song about the pagans and Christians.  I sang a song - to the tune of my Favorite things - and John told jokes throughout.  It was silly and fun for everyone.  We went home about 4:30 and proceeded to crash.  We slept for three hours just sitting in the couch!

It was a great Thanksgiving and really messed up my sleep.  I have again been through the roller coaster ride of insomnia, lack of energy, hopelessness that happens in the bad days.  I wish I could write that it gets better - but it doesn't.  It just is what it is.

So, now I am three days into feeling better and ready to get back on the pickleball court, although I feel like the cumulative effect of the chemo brings me to a new normal.  

Last night I attended the virtual support group for women with gynecological cancers and it was good for me.  There were women who have completed treatment and are living pretty normal lives.  There were others who were in "maintenance" and one who was in hospice.  One woman is looking at the same surgery that I am facing in January and her response is so similar to mine.  There were some very practical suggestions about managing anxiety from people who have been there.  I felt inspired and strengthened by the examples that they are of accepting this life now - finding coping strategies and managing the energy loss and LIVING.

The surgery has been scheduled and it is January 14th.  That means that John and I are going to be able to join the kids on a cruise to the Caribbean to celebrate Marnie's 50th birthday.  I move in between anxiety about how it will be - with John's sciatica and my issues - and excitement about getting out of town and being with the family. The mood swings, I guess, are just part of who I am.  A ton of fun.  

So, I am including the words to my song that I wrote for Thanksgiving - I need to focus on the blessings - and they are many.  As the surgery in January looms large.

My favorite things

Spelling bee, wordle and coffee with cream

Connections with John and  a hot morning shower

Writing to Susan and hearing a song

These are a few of my favorite things

 

Texting the connor girls every morning

Listening to podcasts and Audrey’s phone calls,

Smacking the ball on the pickleboard court

These are a few of my favorite things

 

When there’s chemo

When the bucks lose

When I’m feeling bad

I simply remember my favorite things and then I don’t feel so bad

 

Watching the laughter of Nora and Maggie

Lunching with Addie and Reagan and Hailey

Sharing the Tea with Alyse and her Mom

These are a few of my favorite things

 

Stories from Jackson, Brett coming to Trivia,

Dogs grilled  by Erik and Gossip from Marnie

Sitting with John seeing stunning sunsets

These are a few of my favorite things

 

When there’s chemo

When the bucks lose

When I’m feeling bad

I simply remember my favorite things and then I don’t feel so bad

It is a mystery

Every time I have chemo I have the same reaction.  There are three days in which I am gradually getting more tired.  There is often one or two nights of insomnia and then a lot of sleeping.  I sleep on the couch, in front of the TV, I go to bed early.  I wake up and I am tired and feel myself dragging through the day. 

There is now the added tension of tracking my blood pressure which adds to the stress and anxiety.  I wrote about this - as I have several times over the past months.  It is not just physical issues, but also emotional and spiritual as I feel a sense of despair take over especially as I look forward   to surgery in January.  How will I do this?

And today is Thursday and I am in a completely different place now.  I wake up feeling well and look forward to going to my Peer Group today and participating in life.  It is amazing how the despair melts away as the energy comes back and sleep restores me and all is well.  It is a mystery.  

 I have been thinking a lot about helplessness lately.  I, of course, experience it in my health as I don't know what is happening inside my body right now.  I don't know what is going to happen the next time I get my blood work done.  I don't know what will happen with the surgery. 

 Really, the blood pressure is an example of how this works.  There is a part of me that doesn't want to be helpless - instead I try to fix it with deep breathing or praying or drinking green tea or laying on my side.  I try everything that people suggest.  No one wants me to be helpless - there must be some way I can control this.  All of which leads to a deep frustration with myself.  I keep hearing that I have to have a good attitude - that will make all the difference people tell me.  And I do and I don't.

Yesterday before I did spiritual direction I glanced through the Pema Chodren book "When Things Fall Apart" and came across this quote

"If we are willing to give up the hope that insecurity and pain can be exterminated, then we can have the courage to rest in the groundlessness of our situation."

I have these conflicting thoughts these days.  Can I accept the helplessness and at the same time believe that there is divine guidance and healing?  Are they in opposition to each other.  To give up the hope that insecurity and pain can be eliminated is not the same as giving up hope.   And I guess the hope is in the existence and power of love.

The last few days have been full of a lot of love directed toward me and John.  I have received meals from friends and family, a pie from a friend, chocolate covered strawberries and the great affection of my pickleball gang.  Yesterday I came back to paddle taps after six weeks away and was greeted by so much love.  I played a little bit and 20 of us had lunch together.  Just writing about it brings me to tears.  Love sustains me these days and fills me with wonder and awe.

So, the helplessness is real and so is the love.  Both And? 

It is a mystery.

My Fifth Chemo

And lots of anxiety.  

Wednesday I had my fifth chemo.  It turns out that there will be two more - one the day before Thanksgiving and one mid December.  Then I will go into surgery again in January.  This is part of the anxiety.  It is called "debulking" and it will help to literally remove the cancer in bulk.  And that should help bring down my "numbers" which appear to have plateaued.  That is another source of anxiety.

And then there is my blood pressure.  The third chemo that I am on raises my already high blood pressure.  Friday I was on the phone with the nurse getting yet another medication to try to bring the high numbers down.  It is a real struggle and yet another source of anxiety.

Finally, there is the intermittent problems I have with insomnia.  Two nights ago I was up for a couple of hours and last night it seemed like I did not sleep at all.  I am sure I did - and at least I rested.  None of this is good for blood pressure and contributes to anxiety. 

So, there you have it.  I am waiting for the next three "bad days" to pass so I can get back to being "me" again - or the variation of me that is hopeful and somewhat optimistic and more peaceful.  Instead of fretful, anxious and scared.  Now I wait and pray and rest and trust that somehow in ways I cannot imagine right now - all will be well.

And I AM going to talk to the doctor this week about sleeping pills and other meds.  I need help.

I was grateful to read this practice.  It has been helpful.

James Finley guides us through a contemplative practice that anchors us in the transformative love of God:

In this contemplative practice, sit and renew your awareness that you’re sitting in the presence of God all about you and within you. As you inhale, inhale God’s silent “I love you,” in which God is being poured out and utterly given away to you as the miracle of your very life. Then when you exhale, exhale yourself in love: “I love you.” And so, we are breathing along with God, “I love you. I love you. I love you. I love you.” From the reciprocity of love, destiny is fulfilled, and the foundations of suffering are healed.

As we sit this way, suffering arises. The suffering then might be our anxiety and concerns today, for ourselves, for our loved ones, for the world. As we sit in the midst of the arising of the anxiety, when we inhale, we inhale this love of God loving us through and through, anxiety and all, finding no hindrance in our anxiety, loving us so unexplainably forever. Then when we exhale, we exhale ourselves in love, anxiety and all, to the love that loves us. This requires gentle perseverance, because anxiety arises again. It doesn’t automatically go away. We sit with it, we lean into it again, and we hold fast to this love that sustains us in the midst of things….

This practice, then, experientially grounds us in this love wisdom. This love wisdom—grounded in practice—empowers us to go out and share this with other people in the circumstances in which we find ourselves.

So......in the midst of facing a lot of unknowns and the resulting anxiety - All will be well, right?

On Facebook there was a helpful reading by James Finley

My Morning Routine

I am a morning person and I look forward to every day.  Part of it is my routine.  When I go downstairs the first thing I do is make coffee.  Then I take my morning pills and my blood pressure.  By that time, the coffee is ready and I sit down to do my puzzles, 

I subscribe to the New York Times daily puzzles and it is an investment in sanity for me.

What the puzzles do for me is to help me to use my brain in ways that give me  great satisfaction.  I start with Spelling Bee and after I have made some progress I move to Wordle.  My opening word is always ARISE and usually I am able to discern the word.  (My stats are 97% success)  Then I go back to spelling bee and usually get a few more words and then on to the mini crossword.  I do it as quickly as I can and it can be frustrating because my fingers don’t work as fast as my mind does.  Then I go  back to spelling bee where I look at the hints.  At this point I am usually “Great” or “Amazing.”  If I am not yet a genius, I will l glance at it throughout the day.   At some point in the morning, John comes by and we do "Connections" together.  It is usually very gratifying as we talk through the various meanings of  words that  can link them together.   It can also be frustrating as the answers contain information that we literally don’t know – like hip hop artists or cartoon characters. Our win statistic is 88% so we have room for growth.

Every time I solve a puzzle,  I share it with the girls on the text we all do in the morning.  So, it is definitely a way to connect even though it is pretty superficial.  On reflection, what puzzles do for me is present a problem that actually has a solution.  And usually I get it.  It helps me with my “dementia watch” - but it also almost gives me a sense of grounding.  There is a problem and there is a solution.  

The rest of my life is not so clear.  I take pills and I take my blood pressure because of the cancer.  I am now on a third kind of chemo whose side effect is to raise my blood pressure which is already high.  So morning and evening I am monitoring it - hoping that it will be under 150.  Otherwise, getting the chemo is in question.  If there is one thing I have learned through this cancer journey is that I carry more anxiety than I ever knew.   These days every time I take my blood pressure, I try to consciously relax and breathe.  My default seems to be  tension and worry,

The problem is cancer and the solution is very much in question.  There is so much that I don't know and don't get to know.  I don't know when the next chemo is; I don't know whether the chemo is working; I don't know if I will have surgery again.  I don't know if I am going to survive this.  I live in “I don't know.”

But my morning routine helps.  I get to connect with my husband and my daughters.  And I get to live in the reality  that some problems - like what is the  "Wordle" word - are actually solvable and knowable.

If only that were true of cancer.

Ups and Downs

Even though I expect the bad days, they still surprise me. The tiredness usually comes upon me  on the fourth, fifth and sixth days after chemo.  

What has been frustrating is that the weather right now is so beautiful.  I look out  the windows and see the gorgeous fall colors and wish I could just enjoy the blessing of an October day living here on Hoover Reservoir.  I was able to walk the dog a mile Friday morning and truly felt a glimpse of happiness.  By evening, however, I was in a place of sudden exhaustion.  

What is strange is how the tiredness just sort of floods over me all of a sudden.  Audrey came for dinner on Friday and  I felt fine for the first part of the visit.  But suddenly I was just spent.  After she left I sat on the couch for forty five minutes with my eyes closed recuperating.  Saturday Reagan and Addie came for pizza and I loved seeing them.  It didn't take long for me to feel "weird" and decide I needed to lie down on the couch.  They took care of everything - doing the dishes, getting me water and a blanket, and telling me they loved me.  These visits are both life giving and draining.  But worth it. 

This morning I am starting to feel better.  John and I watched on YOUTUBE the last sermon by our minister Tim Ahrens who is retiring from First Congregational Church after twenty five years.  His sermon spoke to me on so many levels about "Running the Race with Perseverance."  I think about this race that is before me with cancer and it is so daunting.  But the reminder is that Jesus really is with me and will give me what I need to keep going.  Those were his last words - Keep Moving.  Forward. 

My latest practice in the morning is this.  After I have taken my shower, made the bed, gotten dressed and put on my wig, I sit on the bed with a rock that was given to me during the prayer time before my surgery three weeks ago.  I hold it and pray for "Divine Miraculous Healing"  And usually I cry.  

Here is a reading my Anne Lamott that speaks to me today about the courage of prayer

The Courage of Prayer

“My belief is that when you’re telling the truth, you’re close to God. If you say to God, “I am exhausted and depressed beyond words, and I don’t like You at all right now, and I recoil from most people who believe in You,” that might be the most honest thing you’ve ever said. If you told me you had said to God, “It is all hopeless, and I don’t have a clue if You exist, but I could use a hand,” it would almost bring tears to my eyes, tears of pride in you, for the courage it takes to get real-really real. It would make me want to sit next to you at the dinner table.

So prayer is our sometimes real selves trying to communicate with the Real, with Truth, with the Light. It is us reaching out to be heard, hoping to be found by a light and warmth in the world, instead of darkness and cold. Even mushrooms respond to light – I suppose they blink their mushroomy eyes, like the rest of us.

Light reveals us to ourselves, which is not always so great if you find yourself in a big disgusting mess, possibly of your own creation. But like sunflowers we turn toward light. Light warms, and in most cases it draws us to itself. And in this light, we can see beyond our modest receptors, to what is way beyond us, and deep inside.”

― Anne Lamott, Help Thanks Wow: The Three Essential Prayers