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

The picture is becoming clearer

This morning I thought about what I learned from Walter Brueggemann decades ago about "Orientation, Disorientation, Reorientation."  That is his classification of the Psalms.  That is the rhythm of life - similar to life, death, and resurrection.

Brueggemann further suggests that human beings regularly find themselves in one of three places:

1. a place of orientation, in which everything makes sense in our lives;
2. a place of disorientation, in which we feel we have sunk into the pit; and
3. a place of new orientation, in which we realize that God has lifted us out of the pit and we are in a new place full of gratitude and awareness about our lives and our God.

That has surely been my journey for the past three months.  July 4th was the day that I first heard the word carcinoma applied to me and it immediately led me into a time of fear, confusion, despair and grief i.e. the "pit"   This blog has been a testament to that.  

Yesterday I had my fourth chemo and the first following the surgery two weeks ago.  I had a long conversation with Tammy, the nurse practitioner, and feel like I am getting some clarity about what is coming.  And knowledge is power and peace giving.  For me, anyway.

I know now that I do not have cancer of the lining of the stomach.  I had feared that because it was listed on the mychart and I talked it through with the nurse practitioner who assured me that I have ovarian cancer which is - while aggressive - not the death sentence that I thought the other was.

She says that likely after I finish everything - chemo - surgery and then maybe more chemo - I will go on a maintenance chemo for a couple of years.  That will only take a half hour infusion - unlike the 8 hours we spent yesterday.

And yesterday was really not bad.  I was able to read a quarter of a book and John sat with me and worked on his stock portfolio and went to Panera to bring back lunch.  It was really a good day.  

The past three month have truly been a time of disorientation.  And I have learned and experienced a lot. I have experienced chemo, the loss of my hair, and had an aborted surgery which resulted in a long scar in my abdomen.  I guess you can say I have been changed outside and in.    I have learned about nausea meds and stool softeners and monitored my blood pressure  and lived through the no energy days.  

I have certainly learned about being on the receiving end of love and care from others.  I has been humbling and gratifying and beyond words.  Right now, people are bringing us meals and it has been a gift that I didn't realize I needed. My living room is graced with gorgeous blankets made by Eileen and Melanie which keep me warm body and soul.   

And so, slowly I am turning the corner into reorientation.  Living this new life that will include regular chemo treatments and lots of pills and an "iffy" hair situation.  And trivia nights with family and pickleball and game nights and church and and spiritual direction  and lunch with friends, and eventually trips with John.  It is a new life - with the emphasis on LIFE.

I thought I would end with a prayer by Walter Brueggemann

 

                                                          We say, "Yes, yes"

 

Holy God, to whom we turn in our trouble,
And from whom we receive life and well-being….
We gladly and without reservation assert:
You are the one who gives life;
You are the one who hears our prayers;
You are the one who turns our jungles of threat
into peaceable zones of life.
You are the one who has kept us since birth,
who stands by us in our failure and shame;
who stands against our anxiety to make us free.
You are the one who does not hide your face when we call.
So we praise you. We worship you. We adore you.
We yield our life over to you in glad thanksgiving….
As an act of praise, we submit more and more
Of our own life to you;
As an act of praise we notice your poor,
And pledge our energy on their behalf;
As an act of praise we say “yes” to you and to your rule over us.
We say “yes, yes,”
Amen and Amen.

Waiting

I don't think that this is the first post I have titled "Waiting."  That is my continual status.

Right now I am waiting for more healing for this long incision in my abdomen.  On the one hand, I wait with curiosity.  It is fascinating to see how the skin actually comes together after being severed.  The body really does want to heal and there are places that seem seamless.  On the other hand, I wait with dread.  There are many staples and some of them look suspiciously pink.  I watch for infection.  All I want is healing and live with the unrealistic dream of going back to "normal."

Monday I will have another chemo treatment - this time adding a third chemo to the blend.  I have gotten used to the process in the past and hope that this will be manageable.  I also will have my staples removed which causes me some anxiety, but what are you going to do?  It is a step forward.  That is what it is all about.

Meanwhile I fluctuate between hope and doubt with a deep sense of sadness underneath everything.  At the same time (the eternal "both and") I am aware of the many blessings of my unique life.  Not everyone gets to find love AGAIN in their seventies and not everyone has children who live close by, And my friends are far and wide and a source of constant support.  As I titled one blog entry: Life is Hard; Life is Beautiful."

And so I wait, wait, wait not knowing how this story is going to unfold.  Living through doubt, fear, hope, gratitude and faith.  Trusting always that " All will be well"

I found this quote by Pema Chodren which speaks to me this morning:

“We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. 

They come together and they fall apart.

 Then they come together again and fall apart again. It’s just like that. 

The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”
Pema Chödrön

A disappointment and a silver lining

I am writing this from home, Thank God.  I got home yesterday from the hospital and am sitting at the computer and feeling somewhat like myself.  Dressed and fed and with my wig on.  Looking good.

I also have an long abdominal incision from the surgery.  The disappointment is that it was not the surgery I expected.  The doctor came in after an hour and said that the cancer was extensive and would require removal of the colon and so she shut it down.  

The past week has been pretty hard in the hospital.  Even though I was trying to eat lightly and sensibly after surgery - it was too much and I got sick.  That meant two days of no food and drink and trying to have my system both settle down and "wake up."  Eventually I started eating again and was deemed ready to go home yesterday.

At the same time John has had his own challenges this week with both sciatica and breathing problems and respiratory issues that landed him briefly in the emergency room.  So, right now, we are both feeling pretty good by comparison to that!

The silver lining is that the chemo has been working and we are going to continue with that for the next few months.  My prayer is that the chemo will be the miracle that I need.  My numbers on the CA 125 test have been going down every month and that is a very good thing.

The surgery that was planned was daunting and while I was ready for it, I was not looking forward to it.  The aftermath of this surgery is truly hard enough as I wait for this incision to heal and staples to be removed in a couple of weeks and finding my way back to real health.  I am grateful that she did not go forward in light of what she learned on Tuesday. 

And so I live in a new hope.  I have learned much through this time.  First of all, and most importantly, I have learned that I am surrounded by love - of friends and family and husband.  I have received numerous texts, cards and calls which remind me that I am not alone.  I have learned that healing requires real slowing down of everything and a willingness to ask for help at times.  That is hard for a woman who likes to move fast and be independent, but that is clearly the way forward.   I have learned that God keeps showing up in the nurses and other caregivers at the hospital.  It is like a little ray of light in the midst of the darkness. Often recognized in retrospect but very, very real.

The doctor has suggested that we go back to chemo and then the surgery again in a few months.  I don't know whether that will happen - whether I am up for it.  I don;t need to know right now - I need to - wait for it - LIVE IN THE MOMENT.  Never easy - but that of course is the answer. 

And the moments at home - the beauty of an autumn day, the blessing of children and grandchildren visiting and doing my laundry, the constant reassurance from friends are just aspects of God's light at work in the midst of it all.  The clouds are real in my life - but so is the silver lining. 

I cling to the hope that I find there. 

Do you remember this song?

As I wash my dishes, I'll be following a plan
Til I see the brightness in every pot and pan
I am sure this point of view will ease the daily grind
So I'll keep repeating in my mind:

Look for the silver lining
Whenever a cloud appears in the blue
Remember, somewhere the sun is shining
And so the right thing to do is make it shine for you

A heart, full of joy and gladness
Will always banish sadness and strife
So always look for the silver lining
And try to find the sunny side of life

So always look for the silver lining
And try to find the sunny side of life