The Big Questions

The Big questions

I have always been a person who asked the big questions of life – what is the meaning of life?  Who am I?  What happens when we die?  And the biggest one of all : what do I do with my hair  .....now?

I know when I am in a good place emotionally and spiritually – I have comfort with my hair cut, color and style.  Over my lifetime I have had short hair, long hair, brown hair, orange hair(ask my brother), blonde hair, streaked hair, permed hair. I have sported a pixie cut, a Dorothy Hamill do, the shag look, and various bobs.   I have used hair dye I bought at the drug store and paid a lot of money for  coloring, frosting or highlighting my hair. Eventually I land on a style and a beautician  and stick with it for  years or even decades.  And I feel good – like “myself”

When I was diagnosed with ovarian cancer last summer I said , “ I just hope I don’t have to have surgery or lose my hair.”  And of course, I experienced both.  And I didn’t like it.  I greatly appreciated when  friend who had had breast cancer confided that the worst part was losing her hair.  I was not the only one.  And for me,  it has been and continues to be very challenging.

When I knew is was going to lose my hair I got ready.  I bought or people gave me at least two dozen hats or caps.  I met my daughters at “Hope’s Boutique” where we picked out a  chin length blond bob wig.  I got a hair cut in August and hoped that somehow I would keep my bangs.  Not a chance.  By September all of my hair was gone  – including my eyebrows – and it was disturbing.  Every time I looked at myself in the mirror I saw my Mother when she had cancer. It was not comforting.  So,  I either wore a cap or a wig at all times – even sleeping. 

I have found myself saying – John likes it when I wear my wig.  But the truth is, I like it when I wear my wig.  I don’t feel comfortable being bald.

Which brings me to today.  I now have hair  - it is short, curly and white.  It is almost long enough for me  to stop wearing my wigs.  I have shown it to my family and pickleball friends and they assure me it is “cute.”  I would say that I kind of look like Judy Dench – and also my mother.  But the question is – do I look like myself? 

On Friday I meet with Jane – who has done my hair for years now -  for a “consultation.”  I have questioned since retirement dying my hair but with Jane had decided that I felt younger being blond than grey.  I will always remember the wise words of Nora Ephron on this:

“There's a reason why forty, fifty, and sixty don't look the way they used to, and it's not because of feminism, or better living through exercise. It's because of hair dye. In the 1950's only 7 percent of American women dyed their hair; today there are parts of Manhattan and Los Angeles where there are no gray-haired women at all.”

 

So the question is – what do I do with my hair now?  Which leads to the other question - 

Who am I now ?   I am a 76 year old woman living with cancer. That is who I am.  That is not who I want to be.  

Where do I go from here?

Maintenance

I am now on "maintenance" whatever that means.  

I looked up the definition and it said:

Treatment that is given to help keep cancer from coming back after it has disappeared following the initial therapy.  It may include treatment with drugs, vaccines, or antibodies that kill cancer cells, and it may be given for a long time.

 As I unpack this I marvel that much of this cancer has disappeared following the chemo and surgery.  That is a miracle and a gift.  And disappeared - where did it go?  Implicit in the definition is the possibility or maybe the reality that it will reappear at a later date. 

Maintenance for me is a good thing.  It means I continue to have chemo and see my doctor every three weeks.  The chemo is not as strong and doesn't take as long - instead of 4 hours - the infusion lasts 30 minutes.  And because it is not as strong I actually have my hair - white and curly - reappearing.

Maintenance for me means that it is not as debilitating as before.  We just returned from a trip to be with my brothers and sisters in law.  I left that day after I received chemo and had NO ill effects.  That is huge.

Maintenance for me means freedom from centering my life on cancer and being able to reach out more to friends and family.  It means asking myself the question - what is God's call on my life beyond cancer?  I think of the Mary Oliver Poem "Wild Geese"  which ends like this

 Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting–
over and over announcing your place
in the family of things.

 

 Again the questions:  What is my place NOW in the family of things?  

Now that I am in maintenance.

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 !!!!!!!!!!!