The stuff of life: suffering, love and miracles

I am home from the hospital recuperating finally.

First of all about the hospital stay.  I was there seven days and I left Wednesday night after I got the okay on my final test.  I Came home with a foley catheter which is a pain in the neck and other places.  I have it until 'Wednesday.

It was the third one that was put in in two days.  I felt traumatized by it.  That was the worst part of the whole thing.  My bowels slept and my bladder slept and I suffered for it.  The pain was not that bad and the incision was not as long as the last time.  In fact the first three days I had an epidural and I felt no pain at all so.  Hard to describe the mixture of touching moments and suffering and loss of dignity and gratitude that took place over those days.

I had experiences with each of the girls that I will remember for the rest of my life; conversations with nurses and aids to touched my soul, and moments of helplessness and existential dread that remain touchstones. 

The love that I - we - have experienced has been overwhelming. First of all, neighbors and friends literally signed on to help John during this time.  He made arrangements for several people to bring him to the hospital to visit me.  This is no small task - between making arrangements for him to maneuver his walker and driving and parking and all the details.  Several people spent the mornings with him because the Doctor said he should not be alone.  We have been  gifted with so many meals and cookies and treats.  It is heartwarming.  

What i have learned through this is to focus on the main thing - which is rest.  I have an awareness of how hard it is for me let others take care of me.  I had arranged to have a service take are of us for the first three days mainly with meal preparation.  The big question in planning for this had been about how much help John needed.  In this case, it was hardly any help.  However he could not take care of me and I certainly could not take care of him or me.  The dependence was difficult for our poor little egos but good for our sense of humility I supposed.  

Most of all, I feel so grateful.  There have been miracles galore in the past five weeks - people have shown up for us, healing has happened in innumerable ways and love and grace always have the last word.

We still live under the shadow of news about biopsies and further chemo.  We come a long way in a short time and what I know is that I want to choose life - choose joy - choose hope! 

I hope and pray I get rid of this CATHETER !!!!!!!!!!!

Patience and Wonder

I have been writing this blog in my head ever since John came home on Friday.  It is clear to me that patience is needed in this next chapter and it is a big challenge.  This has been an extremely stressful time that has had no quick and easy answers.

I have a picture on the wall in the living room with a quote from Walt Whitman"

"Adopt the pace of nature: Her secret is Patience" 

 

John has been home for a week now and it has been a good thing.  He is walking with a walker as he has issues with his balance following the fall.  Every day is seems he is getting a little more able to manage this new normal for him and for me.  I could write a book about what I am learning about myself through this time.  File it under: patience, waiting, trust

 

I have known always that I am not a patient person by nature.  I am - when left to my own devices - fast moving, fast thinking and fast talking.  Part of my spiritual journey has been to learn to value slowing down.  I can literally remember sitting in the sanctuary at First Christian Church in Zanesville in prayer and wanting God to speak to me.  I received two words:  Slow Down.  That was almost forty years ago. Over and over again God continues to show me that the good life, the God life, is one of trusting that ultimately "all will be well."  My hurry and my worry doesn't help but gets in the way of the peace and freedom I could enjoy.  And my hurry and worry doesn't make me easy to live with. 

 

Anyway, the first problem has been who will take care of John when I am in the hospital.  It may be as many of 7 days and the doctors and physical therapist says that he cannot be alone.  We have a house with a beautiful upstairs bedroom and a spacious walk in shower.  The problem is the 14 steps that are required to get there.  He puts a belt on and I have been trained to guide him and I feel comfortable doing that but he cannot do it alone.  

 

We have had all sorts of  solutions: hire a care company to stay all night and cobble together volunteers who might fill during the day.  He wants to visit me in the hospital, so there is finding people who are welling to get him in and out of the car with his walker and drive to the James Hospital at OSU. Then there were questions about his meals?  What to do?

 

Two nights ago a miracle happened.  I had explained to his friend Jim about our tentative plan to have people bring meals to John at dinner and then wait for the care company to arrive.  He told his wife Pat and she said: "He can stay with us."  It was the answer to prayer.  They have a ranch house and a "Mother in Law" suite with a private bathroom.  They were comfortable with his staying for a week.  The stress lever within me almost dissipated.  It feels like a miracle.

 

John will return to our home from 9 to 5 during the day.  For the most part I have arranged to have two people companion him - on in the morning and one in the afternoon.  Those who come in the afternoon have offered to bring him to the hospital and then return him to Jim's house. This way John can continue to the physical therapy, occupational therapy, and speech therapy which is helping him to improve from the effects of the fall.  

Also we are making changes that will be helpful.  We are looking into a chair lift for those 14 steps, have a raised toilet seat and are getting John a life line (I've fallen and I can't get up.)  Every little thing helps. 

The second issue is of course, what happens after my surgery.  I cannot take care of him or myself perhaps and he can't take care of me.  We both need help.  This is where we are hiring a care company to take care of both of us for at least a week.  It will be fluid and we recognize what are needs will be.  

 

The stress for me has been living in the world of "I don't know" and having to make plans.  I still don't know when on Thursday my surgery will be, how extensive it will be or what kind of help I will need.  We also don't know how long it will take John to get his balance back?  Live without the walker?  Not be dependent on me or others for his safety?

 

What I have learned is that if I am patient the answers (which are always going to be partial answers) will come as we need them.  And give me a sense of some kind of inner peace that "all will be well." 

 

And really live in wonder as the angels appear over and over again in different forms.  

 

 

 

So, slowly John walks up the stairs holding onto the railing.  My hand is supports him with his belt as he walks up fourteen steps. 

 

Slowly John walks down the stairs and I walk before him holding the belt  and watch his feet land - first one, then the other on the fourteen steps.  

 

I have learned that sometimes my wanting to help is to speed up the process - but that is not what he needs as he learns how to put on his trousers and socks and shoes.  

 

But it has been more than watching John struggle and improve slowly from this terrible fall.  

 

I have been aware that 

 

 

Groundlessness

I am listening to some talks by Pema Chodren titled "Living Beautifully With Uncertainty and Change."

I am living with uncertainty and change - but I wouldn't say "beautifully."  It is quite a challenge these days.  John is starting his second week at Dodd Hall and today I will learn of the plan for his release.  There is definitely uncertainty and change here.  Will he be walking with a walker?  Will he be able to go up the stairs to our bathroom and our bedroom?  Do I need to put a hospital bed in the den?  Can he be alone?  What help to we need?  

These are the questions that may be answered.  There is the big question - how long will it take for his brain bleed to heal and what will this new life look like.  And then there is my cancer.  I will have blood work done this week and will find out how much the cancer has progressed or diminished since my last chemo.  The date of the surgery is now February 20th and it is coming whether I like it or not. 

I am living in groundlessness.  I found this quote by her:

But it’s not impermanence per se, or even knowing we’re going to die, that is the cause of our suffering, the Buddha taught. 

Rather, it’s our resistance to the fundamental uncertainty of our situation. Our discomfort arises from all of our efforts to put ground under our feet, to realize our dream of constant okayness. 

When we resist change, it’s called suffering. But when we can completely let go and not struggle against it, when we can embrace the groundlessness of our situation and relax into its dynamic quality, that’s called enlightenment, or awakening to our true nature, to our fundamental goodness. 

Another word for this is freedom-freedom from struggling against the fundamental ambiguity of being human.

 I find wisdom from Buddhism that gives me a sense of peace about my reality at this time. It speaks of a universal truth about life - my life, John's life and everyone else's. I listen to Pema Chodren and it helps but it also is about living with these uncomfortable feelings and they are hard - fear, anxiety, free floating grief. 

 I try to see the little moments of "miracles" and experience the love that surrounds me - but it is challenging.  It is adapting to the groundlessness of life.  Facing it - I can't welcome it - but I accept it.  I like to intellectualize and "figure it out"  .  but I don't like feeling the fear.  I don't.. 

But I find hope in my Christian belief that God is with me strengthening me, guiding me and healing me - even though I often feel alone and adrift.  

Isaiah 41:10

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand"

My new normal

 For the next two weeks John is at Dodd Hall receiving intensive therapy following his fall.  I am living alone in the house and it is very different for me.

He was at the brain and spine hospital for eleven days.  After I recovered from the flu I was spending 4 to 6 hours a day with him there.  It was physically and emotionally exhausting for me (and also for him!) as we lived through the questions of what next?  How much damage did the fall do? Where will he go now?We were blessed to be accepted into the program at Dodd and already he is feeling stronger and developing strategies for coming home next week.  I am very hopeful. 

He has therapy until two o clock in the afternoon and then I come to visit.  This is a manageable schedule for me and I finally am getting rested.  My surgery has been postponed until February 11th or the 13th which enables us to figure out how we are going to make this work.  One problem is that John will not be cleared for driving right away and after surgery I will not be able to drive.  I know that friends and family and Uber will help.  This is one more "lesson" in dependence which is hard for us.  What I know is that the answers will come in due time.

In the meantime my doctor told me I should get stronger for my surgery and I am determined.  Yesterday I played pickleball for the first time in over a month.  I am blessed by my group that has been so kind to me throughout this cancer journey.  I felt nervous about playing but it all does come back and while I have less energy - I know this is a healing place for me. Body, mind, and soul.  I plan to play three times a week until the surgery.

Because John is at Dodd, I have been given time to play pickleball, and to pray and to read and to clean the house.  There is a strangeness and a loneliness to living in the house without John.  And surely he is lonely in a hospital.  Yesterday I texted him a picture of the sunset over Hoover - with the words "We will get our life back."

Yet, I welcome  a definite  schedule and for these next two weeks I feel a sense of peace.  John is where he needs to be and I am where I need to be.  And God is holding us and healing us.

Big Ups and Big Downs

A week ago John and I returned from the cruise with the kids.  If you are on facebook, you might have seen the pictures that they posted.  It was a lot of fun, food, rest, and family.  The only drawback for us was that John's sciatica continued to be an issue and there was a lot of walking on the ship itself to go back and forth from the room.  He was a trooper and we really enjoyed the time away.

A highlight for me were some special meals with first Audrey and her friend Morgan and then with Marnie and Erik. The specialty restaurants were really excellent and there is nothing like being with my kids in an environment where we can really talk to fill my soul. We played trivia most every day and the last day we actually won with Audrey.  We took interesting tours of both San Juan and Dominican Republic which were great.  When we got off the bus in San Juan we ran into Marnie and her family and I was able to join the girls for lunch and shopping while John went back to the boat with Erik and Maggie.  It was real serendipity.  Lots of blessings!

On the way home John fell out of a bus in Orlando which was not good.  That was only the beginning.  When we got home, it was clear that I had a cough and a runny nose which kept getting worse.  By Monday I had a fever and it looked like I would not be able to have my surgery Tuesday.  Monday night we went to the urgent care and it was determined that I had Type A Flu.  Early that morning I fainted twice.  In the middle of that - when I was upstairs recovering I heard a thump and John had fallen and hit his head.  I called 911 and he was then taken to the emergency room.  We still don't know why he fell - did he faint? pass out? what?

Long story short - he is currently at OSU's Brain and Spine Hospital recovering from a brain bleed.  I am so happy that he really is recovering.  After many CT scans his hematoma is stable and he is able to talk and he seems like himself.  It has been a long and hard week.  For the first two days I could not see him because of the flu.  I was down and out on Tuesday and finally coming back.  I have been with him on and off for the last few days and watched his recovering.  It is heartening.

I don't yet what the future is going to bring.  The doctor says that he will need rehab.  I worry about his muscles atrophying after a week in bed and they are not walking him.  He got no physical therapy yesterday and who knows about today or tomorrow which is a holiday.  These are the kinds of concerns i have.  I have yet to have my surgery rescheduled.  They are waiting for me to be free of the flu.  And I have no idea how all will work with that.

Everybody tells me to stay in the present and that is what I try to do - because the future is so uncertain and much of it is out my hands.  There is - as usual - a lot of waiting for healing.  When I googled "brain bleeds" it said that the recovery can be days, weeks, months, if at all.  So, we are doing really well by those standards.

What I do see is a lot of mini miracles in the midst of the dark times.  We were so blessed that there was a bed for him at OSU.  When he left Tuesday he went to St Ann's hospital and their protocol was to take him to yet another hospital in their system.  That was the first miracle.

My girls came to my assistance immediately and spent the day and Kacey spent the night with me initially.  That was so helpful.  I was told that if I fainted again I should go to the emergency room.  Thank God I didn't and am getting better every day.

I have been concerned about the snow and ice at my home and was so delighted to find a neighbor her taking care of salting my walkway yesterday and Audrey provided me salt.  And Nikki showed up and shoveled around my car to get me a clear path to go back to the hospital today.  I had a friend drive me to the hospital Thursday when I couldn't and neighbors watching our dog.  So, I feel held my the love and prayers.

I wait in anticipation for what is coming next.  I trust that all will be well and as my Spiritual Director Loretta says: "God's got this!"

A Grand Distraction

 Ever since my next surgery has been scheduled, that date - January 14th - has been a focus for me.  Whether I like it or not.  The thought of another surgery is daunting.  I go into this one with my eyes wide open.  I know that Dr. Backes will not know what she will find until she "opens me up" That's a phrase I really do not like.

There are so many unknowns about this surgery.  It is going to be a hysterectomy and a "De bulking" and maybe more depending on the extensiveness of the cancer that remains.  I know that the chemo has done something - but the question is how much?  And what will be the aftermath?  What will the recovery be like?  Will I need help? These are the questions that I live with.

I wish I could compartmentalize but I really can't.  The reality is that it is coming.  However, I can distract myself and I find lots of ways - TV, movies, games, But this week - the week before the surgery I am blessed by a grand distraction.  We are going on a cruise.

It feels like a miracle.  I signed us up for the cruise nine months ago to celebrate Marnie's upcoming 50th birthday. When the cancer journey began we thought everything would be over by mid December and I could go.  It was after the first surgery that it seemed that my plans had to change.  I was resigned to cancelling it because I had learned that I was to have a second surgery in January probably at the beginning of the month.  However, I kept putting off actually cancelling it.  Thank God.  Three weeks ago I learned that the surgery was  January 14th which meant we could actually go.  And we are!

Tomorrow John and I leave for Orlando Florida and Saturday we board the Norwegian EPIC ship with family and friends for what I know will be a memorable week together.  So I am looking forward to playing bingo and trivia and a little bit of the slots and sitting on a balcony and looking at the ocean.  I am looking forward to Islands and beautiful sights and sounds that you can only experience in the Caribbean.  I am looking forward to being away. I am looking forward to laughing with my daughters and dancing with my husband. I am looking forward to being distracted and not thinking about you know what.

May it be so!

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.