What You Cannot See

 

 

What you cannot see

I frequently look at Hoover Reservoir and ponder the life in that body of water that goes on unseen.  There is so much that is literally below the surface – the fish, the insects, snakes, turtles, catfish.  We see intimations of life – a fish breaks the surface or birds dip down to feed but much remains hidden.  What I ponder is that there is more here than meets the eye.

I have experienced this same understanding in my cancer journey.  So much is hidden and unseen.  Right from the beginning there was this enormous surprise that cancer existed within my seemingly healthy  body.  A deadly disease lived within my body, thrived within my body. 

Ovarian cancer is hard and slow to detect and usually the CA-125 test is helpful.  The increased numbers reveal the presence of tumors.  It does not tell you how long they have been there and the extent of the damage.  That part is unknown.

I received chemo treatments and efficacy of that procedure was shown in the numbers going down.  So, my numbers shrunk over six months from 535 to 350 to 200 and then I had surgery.What I learned from my first surgery was that that this is one time the surgeon does not know exactly what they will find.  My doctor was surprised,  I imagine,  to find the cancer extensive and involved more than my reproductive organs .  The planned six hour surgery was shortened to an hour as the decision was made to postpone the hysterectomy and  continue with chemo  in the hopes that it would shrink the tumors

After four more chemo infusions, I approached the second surgery with trepidation.  I did not know whether I would require a ileostomy or just the hysterectomy. What I learned is that the cancer was still in the colon but it was basically inoperable.  After the hysterectomy I am now on  “maintenance chemo “ in the hope that the tumors  that remain will  be inactive or would shrink.  There is – as usual – much that is unknown.  I see an outer abdominal scar which is healing,  but  I cannot know what is going on inside.

There is another aspect of my life I cannot see. I have been the recipient of an outpouring of love from friends and family.  Because I have served several churches  I am blessed by literally hundreds of people who have crossed my path over the past seventy five years.  People write and text and assure me that they pray for my healing . One example is Sara, a young woman I mentor who  tells me that she and her daughter pray for me every night. I am sure she does. 

I ponder what happens when we pray.  Is something more happening because of the love and healing desires that are expressed?  How does it affect my healing and the tumors that plague me.  My faith has always been that God is real and God is at work bringing hope, healing, love and peace to this world.  How does that translate to the disease within me.

I would tell anyone that we have been the recipients of miracles since this journey began. From the gift of a caring doctor , to my ability to live with chemo,  to the miracle of John’s recovery from his brain bleed, we have been blessed.  These have been God sightings or signs to me.  To me, these are intimations of God’s presence, leading,  and healing activity.  I am grateful.   

I find hope in the belief in the activity of the unseen God.  Under the surface of my ordinary life, there is something more happening with a disease that I cannot control that lives within me.  There is something more happening that makes this cancer – not my adversary – but my companion. At the very least, I trust that God will strengthen me  to live well with cancer  - facing both the medical facts and limitations and the spiritual truths and mystery.

People ask me how I am.  I am fine, I am scared, I am Hopeful, I am faithful. And  I ponder what is going on under the surface.  I reflect on the mystery of suffering and healing and trust that there is more  here than meets the eye.

Somehow it seems appropriate to end with this quote from Paul

For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

¹³ And now these three remain: faith, hope and love. But the greatest of these is love.

1 Corinthians 13: 12, 13

And the road to recovery........

Whatever that looks like.  

Both John and I are recuperating - me from surgery and him from the effects of a brain bleed.  What I notice about recovery first of all, is that it is slow.  Much slower than I expect and much slower than I like. I am ready to play pickleball mentally but unable to move very fast these days.  And after a little bit of exercise or movement I am tired again.  It is just not time. 

I have learned that walking up stairs takes energy and so does doing laundry and putting together a meal.  What surprises me the most is how much energy it takes to talk and engage with people.  I am usually only good for two hours with the family eating and playing a game and then it is time for them to leave. 

And so the word is always PATIENCE.  Patience with my body and patience with myself.  There is always the problem of my inner voice that says - "you should be doing more.  You are lazy.  You are irresponsible."  That is a lifelong companion and at a time like this is not helpful.  

One of the wrinkles of this time of recuperation is that John has not be cleared for driving.  He has double vision at times and will need to take some cognitive tests to be allowed to drive.   This means that I do all the driving - which is okay for the most part.  Honestly, if you spent any time with me, you would know that I am my favorite driver - so it really is okay.  However, it means I go to all his doctor's appointments as well as my own - that keeps me busy. We have spent a couple of hours waiting for our cars to get tune ups and I have gotten a lot of reading done then.

John noticed that I currently am reading two books with surrender in the title: Surrendered - the sacred art by Rami Shapiro and the Surrender experiment by Michael Singer.  I am in the process of reading them slowly.  Patiently.  What I know is that living patiently waiting for healing is a subset of a life of living surrendered.  I have a lot of ways to resist the reality of the patience necessary for recuperation.  I push myself  with expectations that are in ways that are not healthy and I engage in a myriad numbing activities so I don't have to be present to the waiting time.  Living surrendered is being present to the moment as it is and living in trust that "all will be well."  I wish I were there.

I thought I would share how Rami Shapiro describes living surrendered:

 - Living surrendered is being genuine - feeling your feelings without hesitation, thinking your thoughts without reservation and staying present to it all.

 - Living surrender is awakening to truth, your essential nature, the good and the bad, and finding yourself at home with what is.

- Living surrendered is having your arms opened wide enough to embrace everything, even as you cling to nothing.;

 - Living surrendered is holding nothing back, abandoning your escape route, not looking for alternatives, not thinking things can be or should be other than they are in this moment.

 - Living surrendered is seeing without distortion or deception, and knowing that it is possible to have an unconditional relationship with this moment and this moment and this moment. 

 - Living surrendered is stepping out of hiding and abandoning refuge in security and confirmation, in affirmations and fantasies.

 - Living surrendered is going beyond what is comfortable, safe and secure.

 - Living surrendered is free.  But it costs you everything!

Blessings

Just a quick note to acknowledge how much things have changed in the past 8 weeks.  It has been miraculous.

On January 14th I had the flu and John suffered a mysterious fall which led to 25 days in the hospital.  He was diagnosed with a brain bleed which could have scary complications.  We were blessed that he was accepted to rehab to Dodd hall where he received excellent care.  I got to observe him get stronger and more cognitively   aware during that time.

At the same time I was approaching significant surgery which led to the question:  who was going to take care of me after surgery?  Who was going to take care of John during my hospital stay.  I can honestly say that was the most stressful time of my 75 years.  And now it is behind us.  I marvel at the blessings.

He was blessed by staying with Jim and Pat every evening.  Every morning he exercised for an hour with Jim which I am sure contributed to his rapid healing.  He had friends stay with him during the day and take him to the hospital to see me.   Meanwhile I had the constant comfort by my daughters who stayed on and off with me for seven days.  And now it is behind us.

I am tired but healing appropriately.  I did get rid of the wretched Foley catheter after one week and feel more and more like myself.  He now walks with a cane for the most part and has kept up his exercise and will get stronger every day.  The hard part is behind us.

I know people say - "This too shall pass".  I did think that at times over these weeks but I still marvel that it did pass and we are living in our beautfiul home again.  Frequently being fed by loving friends and full of gratitude. 

A couple of days ago I found a quote by John O Donohue on facebook - I saved it and share it now

 

There is a kindness that dwells deep in things;it presides everywhere, often in the places we least expect’

The world can be harsh and negative, but if we remain generous and patient. Kindness inevitably reveals itself.  Something deep in the human soul seems to depend on the presence of kindness; something instinctive in us expects it, and once we sense it we are able to trust and open ourselves.

John O Donohue

 

We are blessed.

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"