My 15th chemo

And my 5th one with Elahare which so far seems to be working.  My numbers went down again - from 216 to 146.  This is a very good thing.  

So, chemo is becoming very routine.  This time I did not the see the doctor ahead of time because she was out of town - we had a televisit yesterday.  So, the whole thing took three hours.  At this point John has his routine here - he gets his chair settled and in front of the TV and turns on CNBC.  At 9:30 we watch the market open and he is happy because the "futures" are up - whatever that means.  I now have a port which saves time - the nurse no longer has to go through the search for a usuable vein and I get to use both of my hands for my I Pad so I can easily read, do puzzles and send texts.  It is all the new norm for us every three weeks.  I am grateful but a little tired today.

I have had a lot of support from friends and family on this cancer journey and it has made a difference.  There is a group I have not written about that has also been important to - The GO group - a support group for women with ovarian cancer.  I wrote about them for the readers and writers salon and will share it with you. 

 

An Unusual Tribe

I have a new tribe in my life that I have found to be important and very supportive.  What is strange about them is that I have yet to meet any of the women in person.  It is the Gynocological Cancer Support Group.  We meet on zoom once a month and also communicate through a what’s app text chain.  It is surprising to me that these discussions have been so lifegiving and informative.

On our monthly meeting on last Thursday  I connected with eight women who are living with cancer and our facilitator Trinh.  This month we did not have a speaker and so we spent the hour filling each other in on where we each are on the journey.  I noticed that five of us had short hair and are probably coming  back from the hairloss experience.  We also have shared our common issues – fatigue, constipation and neuropathy.  Each have our own unique path in trying to live with and possibly heal from this terrible disease.

One woman talked about how her numbers we going up for the CA 125.  She has a recurrence of ascites which is excess abdominal fluid caused by cancer.  I had that at the very beginning of my diagnosis.  I had 12 pounds of fluid drained from my stomach.  She is emotional relating her fears.  We have all been there.

Another reported on the side effects from her new chemo.  She had been on Elahare which is working for me so far and it didn’t work for her.  Now she has flu like symptoms for one week following her infusion.

Another was diagnosed over 12 years ago and has been on and off with chemo ever since.  Sjue gave a testimonial to the power of prayer,  After she was anointed and prayed over, half of her cancer disappeared.  And I listen to her and wonder if I am praying enough.

Amanda, who is in her late thirties was not present.  She has been working through her bucket list.  Last year on her birthday she was in Alaska – this year she is in Hawaii. My bucket list is not about places but people.  I want to be with the people I love and have experiences with them like family vacations and hootenannies.  Amanda recently celebrated her 100^th chemo infusion.  I will have my fifteenth on Wednesday.

All these check ins remind me that I am not the only one on this often confusing and difficult journey.  All of us know the suspense every three weeks of having a blood test or a pet scan which will reveal what is happening with within our bodies.  Is the disease growing or shrinking?

We also share the specter of what happens when the time comes that the chemo stops working and no more clinical trials are available.  There are three that passed away this past year and it is a reminder for all of us.  The sense of foreboding in unavoidable.

However, the shared reality is that life can be good and we can seek joy and beauty. 

Amanda is an inspiration to all with her bucket list and indomitable spirit.  In our text chain women frequently post pictures of the beautiful places they have visited.  We also share articles about cancer and updates about our struggles.  I remember posting with Amanda when she was in the emergency room at 4 in the morning.  I also remember following my second surgery posting this myself: “I am in the hospital following surgery, in pain and wanting to give up.”  I am allowed to be vulnerable and honest during the dark times. And the responses were compassionate and inspiring and real.

So this new tribe has been a gift.  I know that I have more support systems than many of the women but this offer me an opportunity to live in reality about the ups and downs of living with this disease and the blessing of having some women in my life who are going before me and showing me what courage and good humor and connection can offer us all.

There's always something

Good and bad

First the good - my numbers are down for the second month in a row which makes me happy.  I had my 14th chemo on Wednesday and tried out the new port and it works great.  I enables me to have two hands free for the important work of reading a book and playing games on my kindle during the 2 hours I am there.  

Also I saw the eye doctor and so far I am not having the side effect of blurred vision.  So far to good.

Also I feel "prayed up" or spiritually healthy.  Tuesday Kim gave me a reiki treatment and it enabled me to feel peaceful going in to the chemo.  Last night John and I went to our first "sound bath" which was a spiritual experience being led with a guided meditation followed by about 45 minutes of various musical instruments.  We were comfortable in the darkened candlelit room and it was peaceful and I experienced God's love and presence in it.  I always need this.

Since I last wrote I did something that was on my bucket list.  I didn't go anywhere but hosted about 16 people at a "Hootenanny" led by my dear friend Mary Wood.  After an Italian dinner we sang camp songs, hymns, folk songs and even a little Frank Sinatra.  We ended with one of my favorite hymns - It is well with my soul.  That is true - it was well for my soul!

And now the bad - I have been having  an issue with sleeping due to my propensity to JERK right before I go to sleep which keeps me awake.  And actually in pain.  Wednesday night I only slept for two hours - or it felt like it.  I called the doctor I got a prescription for trazadone which she had suggested on Wednesday when I got chemo.  

The trazadone worked in that I slept.  However, I was so tired I felt like I would never wake up.  I played pickleball for the first time in two weeks and pushed myself to play through the fatigue.  Amazingly, I did pretty well - I always say that if I don't have to move my body and the ball comes to me, I am pretty good.  But underneath I struggled all morning.

I have since figured this out.  I now take a half pill and it solves the sleeping problem and the  waking up part too.  It seems like this disease leads to complications and problems that need to be solved along the way.  Next week I see a cardiologist because I have a stenosis in my kidney.  I don't know where that will lead.  But there's always something.  Bad and good.

Sermon on Martha and Mary - The better part

Three weeks ago Audrey and I did another mother daughter sermon - this one on the story of Martha and Mary which has been really seminal in my life.  I thought I would share my portion

 

And Jesus says – Mary has chosen the better part

 

What does this mean?  This is a story about hospitality.  About welcoming the friend and the stranger and the savior.  Martha does that.  She welcomes him and does what a good hostess does – prepares a meal for him and probably for his disciples. That is hospitality.  That was clearly the cultural model of the day.

What this text shows us is one more way that Jesus defies our expections of what is needed.  Surprises us! This man is always showing and teaching a new way of living – he extols the compassion of the Samaritan (of all people) , he eats with unclean people, he tells us to love our enemies

There is more to hospitality that feeding people – as stressful as that can be.  In fact, he tells poor Martha that her efforts are misguided.

Mary has chosen the better part

The text tells us: she  “ sat at Jesus’s^[b] feet and listened to what he was saying.”  She listens. Paul Tillich has written “The first duty of love is to listen”   She welcomes him and shows her love by listening.  She has recognized in Jesus a person who lives in freedom from fear and anxiety. 

Hospitality in the kingdom of God is an invitation to do more than feed the body  - it is an invitation to feed the soul .  And that happens when we are with God – when we listen.  When we have a holy encounter

Martha is an example of what happens when our souls are hungry

Anger resentment distraction  - people pleasing – caught in a vise – and something is wrong – stressed and distressed - something is missing even though we are doing what we are supposed to be doing. 

Jesus has asserted that Mary has found the better way –

And it begins with listening and receiving.  That is primary.  Serving comes out of the relationship with God.

When we live our life like Martha – consumed with tasks and accomplishment – it easy to fall into the illusion that it is all up to us.  We can become a member of the club that says – when all else fails – Pray

But until then it is all up to me.  After all doesn’t it say in the Bible “God helps those who help themselves?”  Uh NO

Mary has chosen the better part – Listening to the words – putting herself in the presence of Jesus.  Hearing the gospel message of love and grace.

I said – I have been and I am Martha.  I can become distracted and worried about many things.  While my working years are over and I no longer have the stress of deadlines and meeting other people’s need in church AND I still can get distracted with worry.  And – like you – I have many things to worry about.

I was diagnosed with ovarian cancer a year ago and I have experienced lots of reasons to worry.  I now worry about my blood pressure, my low sodium diet and whether this latest chemo is working  I can worry about what is going to happen in the futures.  And, of course I do.

I have learned that I can veer between two positions – I don’t know what is going to happen.  And I do know.  And It won’t be good. 

It was only when my spiritual director invited me into prayer – a time of silence and listening for God that I heard this – All with be well.  I am with you – even unto the ends of the earth.

That was a moment – a peaceful faithful moment when I experienced the better way.  I would like to tell you that I live in that peace and reassurance.  But you know that is not true – I am human. 

Until I remember to listen – not only in prayer alone  but  I listen as the followers of Jesus share their faith and then I remember. God is here and all will be well.     Otherwise the fear and anxiety will overtake me. 

This is a profound story with many layers to explore – but the overarching message is that Jesus shows us the better way

Making a space in our lives – spending time with God’s word – worshipping with God’s people, praying being still

Listening

Finally

I know that I wrote about JOY in my last post because I needed to be intentional about finding the joy.  I have really had nothing but bad news since my surgery in terms of my "numbers."  The CA 125 test reflects the amount of cancer activity.  It has been going up since the surgery.

I tried one chemo and every three weeks the numbers increased.  I have recently tried another and it went up after the first infusion 150 points.  I wondered why Dr. Backes was trying it again but I always trust my doctor.  And FINALLY there is hope.  The numbers went down yesterday!  100 points!

And all I can say is - what a difference a day makes.  I will be having my third infusion tomorrow and I hope the numbers go down even more in the next few weeks.  The side effect is that it can affect my vision but so far so good on that.  There is good news and I am grateful.

Meanwhile we wait to learn about how John is doing.  Today he is getting a pet scan after a diagnoses of B Cell Lymphoma after a pimple was removed by his dermatologist.  This is a scary diagnosis but there are various forms with differing levels of seriousness.  The good news is that he will have the Pet Scan and we will see the doctor an hour later.  After these weeks of waiting - that is a gift.  This is a journey of waiting for both of us.

This weekend Brett, my son in law, will be riding in the Pelatonia to raise money that goes exclusively to medical research.  He has so far raised $13,000 and his friend Mike who he is riding with has raised over $2,000.  It is all very impressive and meaningful to me.  Both John and I have been recipients of the latest medical research and we are grateful for their effort.

I saw a Psychic. I understand the skepticism but I also believe that some people have gifts.  Whether she does I don't know. I hold it all lightly.  However,   she told me that when she read my Tarot cards she saw "Abundance" and "Limitless Possibilities 

In the last few weeks,  I have  preached again with Audrey, vacationed  with the rest of the  family in Michigan, been invited to lead a Bible study in the fall, gotten good news about my cancer and have a son in law raising money and riding a bike in my honor.  I call all this ABUNDANCE. 

More joy

After my daughters read my last blog they sent me their personal examples of joy.  

 

One of them said

1. spending time with my kids

2. spending time with my mom

3. spending time with my sisters

4. going to a comedy club

5. finishing a project at work that's exciting

6.lifting weights

7. used to be running - now it is walking

8.cuddling with Oreo my dog

9. watching a listening to true crime stuff

10. I don't know I have to think about that

 

Another one said

1. listening to my kids talk to me

2.mystery books

3. Evermore and Folklore albums

4. Realty shows

5. TTPD album

6.Being with mom and sisters

7. planning trips

 

Anybody else want to share?

My email: ogram842@yahoo,com 

I’ve got the joy, joy joy joy down in my heart

 

 

Two months after I retired – ten years ago – I purchased in a Phoenix gift shop a tag that hangs on my rear view mirror.  It says “Do more of what makes you happy.”  That has really been my mantra ever since I retired.

Now that I have cancer I am more aware that finding joy in life matters greatly. Joseph Campbell wrote: “Find a place inside where there’s joy, and the joy will burn out the pain.”

I have found that joy is personal and everyone has their own happy places.  This weekend I met Alyse’s boyfriend Kyle who talked about how much he loves bees.  And I know my son in law Brett finds his joy riding miles and miles on a bike.  And I watch my husband John and his joy is often found in Accomplishment – getting something done.  None of these would be on my top ten list.

As I reflect on myself I have learned that some things that give me joy are new and some things have been constant throughout my life. These are my top ten now.

1.   1.   ------- Finding a good book that I can get lost in.  Finding myself thinking about the characters and wondering what is happening next

2.   2.   -------- Sitting outside with John and looking a Hoover Reservoir and staying long enough to watch the water move and make designs on the surface, the birds  come and go, and the clouds change.  We use the Merlin app and record the birds that we hear but often don’t see.

3.  3.    -------- Sitting at a table playing cards with my family.  Shuffling and dealing and bantering. I especially like to play speed games like taco, cat, goat, cheese, pizza or pounce.  But I can’t play these too long  or I will need a valium

4.     4.---------- Watching Seinfeld or the Office and something silly like the Naked Gun. I get to laugh out loud, My latest guilty pleasure is watching America’s Home Videos.  There is something about watching people falling and getting hit in the head that really makes me laugh out loud.

5.     5-------. Playing pickleball – it is not just exercise.  It is  constant thinking about the next shot and not thinking about problems or illness or Donald Trump

6.   6. -------  Singing!  I like to sing at church and with other people and  alone.  I like to sing camp songs, hymns, the old Standards like Frank Sinatra, folk songs. 

7.    7.  -------Cooking!  I like making hello fresh meals because the ingredients are there and the directions are clear and I have a finished product I want to eat.  I also like trying new recipes.  I recently made Bruschetta for the first time and enjoyed toasting the bread and preparing the tomatoes ahead  and then putting it together – bread tomatoes cheese balsamic dressing. Yum,  This is a new joy after 25 years of Chuck cooking for me – who knew how much I would enjoy this?

8.     8.------- Preparing for company.   I like planning the food, making up games to play, straightening the house, setting the table and the wonderful gift of anticipation.

9.     9.------- Going to the movies. I like to get there early and see the movie trivia and especially the previews.  Then the lights dim and larger than life a movie to get enjoy

10. 10.-------Writing – I don’t like to do it but I like the process and the result.  I write to process my life and frequently I am surprised at what emerges from an hour at the computer.

This morning one of the women in my cancer support group shared this on our Whats App text chain

Joy doesn’t cancel out the heavy things – but it gives you different pockets of strength to carry on.  Let it in wherever you can.

 

We have a lot of heavy things to carry these days but there are large and small joys that lighten the load. 

What are your top ten?

Living in Limbo

 As usual I am waiting.

Right now I am waiting to find out if I need to be hospitalized.  I have had high blood pressure and it is possible it has affected my kidney.  I may need a biopsy but because of my blood pressure, it will need to be done in the hospital after they get it under control  

At the same time I am really looking forward to seeing my whole family on the 4th of July.  The girls are coming here and we will have boat rides and play games and have dinner together.  I am especially looking forward to seeing Alyse and her new man - as we all are.  So..... hope it happens.

Next week I take a blood test and find out if the current chemo is helping to bring down my cancer numbers.  I also find out if  my eyes have been affected by this chemo.  I also will receive another infusion of chemo.  I hope all of this happens. 

So now I wait. 

This journey has been one of waiting and understanding that much of what is happening to me is out of my control. I am living in limbo.

I just finished reading a novel by Ann Cleves which is a "Vera" mystery.  I find these to be very satisfying to read in the meantime.  There is a problem to be solved and it IS solved.  And there are good people who are working together the betterment of humanity.  And it can take me away from the here and now until I find out what is really going to happen and what is really going on.

In the meantime I live in gratitude for the gift of the care I am receiving and the myriad blessings of my life.  And read and watch TV and play pickleball and live.