Tuesday, October 15, 2024

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.


Thursday, October 10, 2024

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


Sunday, October 6, 2024

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 planTil I see the brightness in every pot and panI am sure this point of view will ease the daily grindSo I'll keep repeating in my mind:
Look for the silver liningWhenever a cloud appears in the blueRemember, somewhere the sun is shiningAnd so the right thing to do is make it shine for you
A heart, full of joy and gladnessWill always banish sadness and strifeSo always look for the silver liningAnd try to find the sunny side of life
So always look for the silver liningAnd try to find the sunny side of life


Monday, September 30, 2024

I am ready

Surgery is tomorrow and my bag is packed and I am ready to go. 

I am played up and prayed up.  Today at pickleball - my last time to play in two months, probably - everyone prayed for me after we played.  Then I had a reiki treatment in the afternoon and a group of spiritual directors came over to do a prayer circle for me.  It all was very meaningful.

The last few days have been a time of  settling in and getting prepared for tomorrow.  I really feel like I have been through a mental and spiritual journey for the last three months.  I have faced my fears and felt my grief and come to a place of acceptance.  There is good news because the numbers of my "CA125" test have been steadily going down.  The tumors are truly shrinking and now it is time for the surgery.  The dread that I had felt has been replaced by a sense of determination.

So, I will arrive  with John at the James Hospital at 5:30 tomorrow morning, hopefully see my daughters, and then the surgery will be at 7:30.  My prayer is that it will go smoothly and that there will be a minimal amount of cancer.  I am part of a clinical trial and so I will receive heated chemo for 90 minutes following the removal of the ovaries, etc.    It is a daunting surgery, for sure, but I hope that I will feel held by God throughout the day.  

I am ready.


Friday, September 27, 2024

Complications

The complication is a UTI that I had last week and maybe is recurring.  At least it seemed so last night and so today I have an appointment with my doctor.  This is the third time I will see her in two weeks as she helped me through the first time I encountered this.

Last night I was up worrying and doing that thing everyone tells you not to do - googling.  I googled UTI before surgery and learned that it can really make things worse - like sepsis.  I knew I had to do something about this immediately.  The biggest fear is that something will happen to postpone the surgery on Tuesday.

I learned yesterday that in the clinical trial I will receive chemo - heated up (!) following the hysterectomy.  It is called a "chemo bath" and it will extend the surgery ninety minutes.  According to research, the people who have this treatment live thirteen months longer.  All of this is daunting and yet I am glad that I am part of the trial.

Yesterday we met with a neighbor who learned a lot about nutrition following her surgery for colon cancer.  She helped me to recognize the foods that do not inflame the colon that will aid the healing for me after my surgery.  She was literally a Godsend to me.  It makes me feel more ready to go.

How am I? 

 I am   scared that this UTI could cause the surgery to be postponed.  Could I be imaging the symptoms or is it my fault that somehow it has recurred?

How am I? 

I am trying to just live my life and ignore the fact that I am bald and may be bald forever.  I don't want to hear anyone say - "it's just hair."  I have a friend with cancer who posted her picture with her family and she is bald.   I will not do that.   No one will see me bald except my kids and John and then only quickly.  I like to keep my illusions that all is well and I am the same .  It really is an illusion.

How am I? 

I am wishing it was Tuesday already.

Tuesday, September 17, 2024

Waiting

The surgery will be in two weeks and I am now in a period of waiting.  

The interesting part is that I feel fine.  In fact, I feel so good that I am able to play pickleball.  I have a little less energy, but I am still "me" and able to really enjoy it.  

At the same time I live with this reality - there is cancer "at work" within my body doing something bad.  And I am facing a long and possibly complicated surgery with what my friend Susan called a "hard heal"afterward.  

But for this moment and for these weeks life goes on.  There are three really important activities that are helpful.

The first is, of course, pickleball.  I get to move my body and be with a whole bunch of very caring people, some of whom I have been playing with for 5 years.  It is comforting.  The most important part for me is that I remember how strong I am.  I come away from pickleball thinking "I can do this."  Meaning I can do these next steps and not only endure and survive but thrive.  I can do this.

The second is to be with my family.  Sunday I went to Marnie's house for Addie's 20th birthday party.  There is something about the love and the chaos of family life that just fills my soul.  We came into the house and ten year old Maggie was in roller skates circling around the kitchen and living room.  Addie opened her presents with her sister Reagan and Bff Hailey providing oohs and ahs and literally squealing over the mug, bracelets, stuffed animals that she received.  I find these days that just watching the interactions among everyone gives me joy.  It is my own family sitcom and they never disappoint.  And it is my legacy - a family that laughs and enjoys each other so much.

The third is to go to church. Sunday I led the first of three Bible studies this month.  (I will take a break after surgery and come back)  We are studying the book of Galatians and I love preparing and thinking about the themes of that day.  Do God still reveal Godself to people today as God did to Paul?  How do people today struggle with being a God versus a people pleaser?  How does our valueing conformity get in the way of our faith?

Then we go to church where always I sit and remember that God is with me.  And that I can count on God's strength and healing power in the midst of this waiting time.  What I have found during this time is how important the words to the hymns are to me - they truly comfort me.  This past week we sang "Nearer my God to Thee" and I could hardly get through it.

I will end with the words to the second verse.  They speak to my soul.

Though like the wanderer, the sun gone down,
darkness be over me, my rest a stone;
yet in my dreams I'd be
nearer, my God, to thee;
nearer, my God, to thee, nearer to thee!

Monday, September 9, 2024

Your body wants to heal

I am quoting my friend Susan as she recounted her experience of having a hysterectomy some twenty years ago.  Those are such comforting words that I cling to.  My body wants to heal and my God is real and loving me and wanting to bring healing.

This journey is one of remembering what I think I believe.  Because the demons of hopelessness and despair are always just around the corner.  

I went to a luncheon at the James on Friday with Marnie.  The speaker had recovered from cervical cancer and inspired us with the knowledge that it truly can be eliminated with screening and vaccines.  I also met a woman who had recovered from both lung and breast cancer.  She was vital and alive - in fact she recounted how she had ridden in the Pelatonia seven weeks after her surgery.  "Only" 25 miles.  Any time I meet someone "on the other side" of cancer, I remember that your body wants to heal and God is always present loving and healing everyone. Even and especially me.

The night before I attended a zoom support group for those who have my cancer and it was less inspiring but still very helpful.  We had a representative talk about palliative care and hospice which was sobering to say the least.  At the same time, I asked questions about my upcoming surgery and was given some very practical advice - what to eat afterwards, what to realistically expect in the recovery time.  This group reminds me that this is a tough journey for all of us and we just keep going, learn what to do, make good choices,  and trust the process.  One of the images that has always been important to me was of a plant.  I believe that too often we keep picking up the plant and checking the roots to see if it is growing - which gets in the way of the growth.  Instead, I need to just trust that in the midst of the pain and worry and anxiety about neuropathy and surgery and yes, losing my hair - something is happening underground in the dark to bring about the shrinking and removal of this cancer.

Today is a crash day - feeling achy and fluey and wondering how to spend the day.  These next two days are just times of "getting through" until miraculously I will probably wake up and feel fine again for a couple of weeks.  Up and down, hope and fear,  but ultimately deep faith that my body does want to heal and God is with me.