Living in I DON'T KNOW LAND

Living in I DON’T KNOW

Since I was diagnosed with cancer I have been living in what I call I DON’T KNOW LAND.   It is not easy.  I have a few mottos I live by and one of them has been:  “Anxiety is caused by not enough information.”  When you live in I DON’T KNOW LAND you actually get used to this reality.  You don’t know and you don’t get to know.  At the same time it is helpful for me to express the myriad things I don’t know right now.

One of the things I don’t know is where this cancer came from.  How long I had it.  Did I miss some red flags and would it have made a difference.  When I was gaining weight in my abdomen and thought I was just getting fat instead of filled with Ascites, would it improved my chances if I had visited the doctor?  I don’t know.

Another thing I don’t know is about the efficacy of the chemo that is being used on me.  I get a glimpse because every three weeks I get blood work that includes a CA 125 test which shows the amount of activity of the cancer.  When the numbers were going down I didn’t know how far they would fall and now that they are going up – I don’t know how far they will will go up.

I don’t know at what point Dr. Backes is going to say – this chemo is not working and we are going to try something new.  I have  imaging next week to find if they can “see” the cancer.  That would be a good thing, because that makes me eligible for a clinical trial.  Clinical trials require visible cancers so that they can see if they work. My cancer is small and has been described as “couscous” as opposed to a large tumor.  I don’t know what will happen if I am unable to have these trials.

I don’t know about the side effects that I am currently experiencing and that are to come with a new chemo.  Currently I have neuropathy on my feet and my fingers and constipation and high blood pressure.  This weekend I have been extremely tired, coughing  and I vomited Sunday morning at breakfast at Glen Laural. (It was a little embarrassing).  Are these side effects of the Avastin that has been added to the Elahare in the last two months? Are these  caused by the cancer itself?  I don’t know.

And of course, I celebrate my  77^th birthday next week and I wonder if this will be my last one or if I will have two or three or five or ten to come?   I don’t know.

As I write this I realize that sometimes I hold these questions lightly – knowing they are there and essentially unknowable; and sometimes they weigh heavily on me.  They do not cause a sense of anxiety but it’s more like dread and foreboding.  They are always in the background.

What I can control is what is in the foreground.  I live in a house in the woods on the reservoir and daily I get to reflect on the beauty and singularity of each day.  I have been blessed with a long and meaningful  life and the blessings of a good marriage, a loving family and supportive friends. 

And there is my faith that grounds me.  I do  know myself to be a beloved child of a loving God and I have assurance that while I do not know what happens at the end – it will be a wonderful surprise. 

I have today and I get to embrace it.  That much I know.

Holy Week

 When I preached during Lent I would refer to the final 4 as - Palm Sunday, Maundy Thursday, Good Friday and Easter.

 

The last 4 days of Holy Week were important to me and I want to get it down what it meant to me.  I did not go to a Maundy Thursday service because I had a support group meeting with what I call "the gyno gals" - the women who are on this journey with gynecological cancers.   It is a zoom meeting and we did not have a speaker.  Instead what we do is tell where we are at this point in our treatment.  After one speaks, she names another until we have all had a chance to share.  These are my favorite meetings.  It seems appropriate to choose this over the church service about the last supper.  Some of us are facing the prospect of death coming and others are hoping for a cure or a few years more to live.  

So I heard about the side affects that continue for some after the cancer is presumably gone, about those who are on the same chemo regimen as me, those who battle fatigue just like I do.  There were two who were new to the meeting who had just been diagnosed within the last month.  I recognized the way we all have to get used to this stunning news of cancer.  There was so much caring, and understanding and honesty to all of this.  Last year we had three die over the course of the year but no one now seems to be that bad.  I end up feeling connected and aware of what may be coming and also some terrible things that I have missed - like radiation.  We all have suffered and will suffer and somehow it reminds me of the suffering of Jesus.  We are not alone with any of this although we can certainly feel it.

Friday night I went to the Good Friday service at Northwest Christian Church with John and Audrey.  I made a joke when we got into our pew about the kleenex on the seat asking John if he thinks he might cry tonight.  All it took for me was the opening hymn and I was grateful to have kleenex.  It is a somber service and the air felt heavy like it does when people are praying.  I just allowed myself to be present for all of it - the tenebrae service where I heard the familiar story and lights were slowly extinguished The choir sang "When I Survey the Wondrous Cross"  powerfully and at the end - in the dark - an older man sang the first verse of "O Sacred Head Now Wounded".  

 O sacred head now wounded
With grief and shame waighed down
Now scornfully surrounded
With thorns thine only crown
How pale Thou art with anguish
With sore abuse and scorn
How does that visage languish
Which once was bright as morn

And this service  touched my soul in ways that I cannot give words to.  It was about death and suffering and love and life. It's the suffering of Jesus and the suffering of the Ukrainians and Iranians and these 10 women whose faces I saw the night before talking about their cancer.  And feeling it and naming it and trusting God somehow with it all.  

And then the next day was our family's Easter party.  I did my 4th annual Easter Egg Hunt and Scavenger Hunt Saturday morning.  the weather was perfect - from 11 to 2 it was sunny and warm and perfect for wandering around our wooded site looking for eggs and clues.  It did clues for two teams and I think they were hard enough but not too hard.  Alyse is a puzzling genius so nothing seems hard for her but it was fun to watch the kids and to interact with everyone.  I love just watching people mix and mingle and really engage with each other.  I looked back that evening and thought about the sweet vignettes of people connecting - cousins, sisters, friends, grandparents.  It was a very satisfying day for me.

And then finally there was Easter Sunday.  Audrey and John and I went to church at Northwest again and experienced a another wonderful service.  There was a brass band accompanying the choir and at the end they sang the Hallelujah Chorus.  I love the text of Mary in the garden after Jesus tomb was opening and found to be empty.  There was a gardener who she did not recognize as Jesus until he spoke her name.  I think of the old hymn "Open my eyes that I may see."  The word that I most associate with Easter is "SURPRISE".  And for Mary and for the Disciples it was - SURPRISE! I am here and you didn't expect me.  My sense of Easter this year - was to remember that this world is Enchanted with all kinds of SURPRISES - like the people that support you when you have cancer, like grandchildren in the 20's who are willing to accommodate their grandma by collecting eggs and running in the woods after clues,  like crocuses and daffodils in the spring, like these soulful experiences in worship  that leave me speechless and in tears and still comforted.

It has been a Holy Time and now back to real life. My numbers have gone up a bit and now I am back to living in "I don't know" land.  I don't know what the doctor is going to do, I don't know whether there will be a different chemo, I don't know how long my life is going to be.

Yet - I do know that no matter what is happening in the near future - there will be more surprises as God is not done with me yet.