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

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