Epistle 1

This letter Mom wrote to her church two weeks ago when she was in the midst of her medical diagnoses. She was very happy to be with "her beloved flock" when she and Dad attended service there last week. Mom is so grateful for the prayers of her church family as well as from other church families across the country.   

January 13, ’13 (now that looks/sounds lucky, doesn’t it?)

Greetings to my beloved flock,

So often when reading the Epistles I am struck by the writer’s (most often Paul’s) noting how much he longs to see and be with those he is writing to…that is how I feel now and how I’ve felt in recent weeks! I wanted to write you last week for Epiphany, as you know one of the most meaningful ‘feasts’ of Christian liturgy for me. What an epiphany journey we have embarked on…and I have received so many messages noting the coincidence of Epiphany and light and revelation, etc., with my diagnosis.

So yes, this past Monday, January 7, I had laparoscopic surgery to investigate the size of the tumor in my pancreas which was not evident until endoscopic ultrasound on December 27. The results of that test were given to me on Dec 29 as family gathered for our Christmas dinner.  I was shocked to even say the words “I have cancer cells in my pancreas and need immediate surgery.”  I kept stressing the word cells as the word tumor had not been spoken yet. Very very difficult to experience my children’s reactions.

By Wednesday morning January 2 I had an appt with top pancreas surgeon at Dana Farber and discussed the atypical location of my tumor.  My doctors here and in Boston were each quite optimistic that I would be strong candidate for a big surgery to remove it…all our children were with us in Boston. They got the news from Dr. Swanson “… cancer has spread…Stage 4 …surgery not an option…” and then had to wait 45 minutes to see me and were terrified about my dealing with this news alone. When they were allowed in I said “we’re going to make these days joy-filled” and I did not break down and cry. Perhaps we are each putting on the smile to help each other BUT it does help! But indeed we were and still are stunned by the news.  As my daughter wrote to friends, “The news just took our breath away.” As I think you already know, I am not yet experiencing any symptoms (gratefully) and yet makes it therefore so unreal. SO that was only 5 days ago and already it seems 9 lives ago.

AND now we are already up to the Baptism of Jesus and His new beginnings and journey into the wilderness.  “Are ye able to baptized…?”

There have been and continue to be a “flood” of unusual and positive and hopeful signs.   I deeply believe in the power of prayer and equally believe that these many signs are carrying me forward right now. I am attaching the prayer/poem by Jan Richardson that I had planned to read you on Epiphany and which has since been sent to me by another Presbyterian pastor (Christine Foster in Providence)…and just this moment decided to also include the poem I wrote January 1981 for Epiphany…32 years ago! Indeed, we cannot plan or create epiphanies…they are gifts…and may we see new gifts and continuing revelations of who GOD is while we follow his star.

I Love YOU!  I Miss YOU! I Pray for YOU!

And I know YOU Pray for your Pastor Denise!

God Bless Us Everyone!

Where the Map Begins
by Jan Richardson

This is not
any map you know.
Forget longitude.
Forget latitude.
Do not think
of distances
or of plotting
the most direct route.
Astrolabe, sextant, compass:
these will not help you here.

This is the map
that begins with a star.
This is the chart
that starts with fire,
with blazing,
with an ancient light
that has outlasted
generations, empires,
cultures, wars.

Look starward once,
then look away.
Close your eyes
and see how the map
begins to blossom
behind your lids,
how it constellates,
its lines stretching out
from where you stand.

You cannot see it all,
cannot divine the way
it will turn and spiral,
cannot perceive how
the road you walk
will lead you finally inside,
through the labyrinth
of your own heart
and belly
and lungs.

But step out,
and you will know
what the wise who traveled
this path before you knew:
the treasure in this map
is buried not at journey’s end
but at its beginning.

The Gift of Epiphany

by Denise Soares, 1981

More – oh so much more

Than gold, frankincense

And myrrh –

They come bearing gifts

And rejoice in their discovery:

“HE IS HERE!”

The Magi celebrate His existence.

                                               

He responds with His Gift

And reveals His essence.

The Magi are discovered, found, cherished, real.

Epiphany celebrates

Not His existence discovered,

But His essence revealed.

Yes, we rejoice

Whenever we discover Him.

But greater – oh so much greater

Is the joy of discovery

When He reveals Himself to us.

We feel found, discovered, cherished, real.

Epiphanies are gifts.

Each one is a manifestation,

A proof of His presence.

“HE IS HERE!”

Then, when celebrating this rich discovery,

Comes the Gift of Epiphany,

The gift of yourself.

I feel very real, very cherished.

We cannot choose epiphanies.

We cannot create epiphanies.

Each epiphany comes with gifts

(Oh so much more than gold, 

frankincense and myrrh)

A gift of self.

In each Epiphany, He makes himself present.

A

f

Update from Golden Pond

Mom had her first chemo yesterday, and thank God, her initial reaction seems to be okay.  She was not able to get a port (for taking blood and administering the chemo) like she had  hoped, but she will have that procedure done next week.  Mom also had a CT Scan done this past week to look at her lungs, abdomen and pelvis area; the results showed that no new spots had appeared.  We were grateful for that for so many reasons, including keeping Mom's spirits up before her first chemo.

Speaking of Mom's spirit - she has been taking a few yoga and tai chi classes at the oncology center and she loves them.  We thought it was so terrific that she went to the first one a whole week before she "had" to be at the center for her regular treatments.  She really likes the message of summoning and drawing upon the positive energy of the present moment. (She inspired me to take a yoga class this past week. It was a nice way to connect with Mom and I thought I could use some help on focusing on the moment at hand.) Dad continues to enjoy his aquatic exercise class, even going this week when it was so bitter cold outside.

When Mom and Dad moved to Tiverton fifteen years ago, Mom called their new home "Golden Pond" due to their great view of Stafford Pond. (Side note: Mom has always enjoyed naming things; for instance, she named our coal stove in Baldwin "Prometheus.")  From their living room and deck, Mom and Dad love watching how the light on the pond changes daily and seasonally.  When she sees those beautiful pink clouds in a sunrise or sunset, she says, "there is a Nana cloud!" - a reminder of her mom, our grandmother, who loved the soft colors of pink.  (Mom's friend Mary At emailed me a photo of a beautiful sunset in Maine to share with Mom.)

Here are some images of Golden Pond that Mom has sent from her new phone she is trying to master.

PS I did change the Comments settings to hopefully make it less confusing for folks to leave comments if they wish.  If you tried, last time and could not, please try again.  At the end of a post, you can click on the "No Comment"s link or on the "# of Comment"s link to leave your own comment.  Mom has enjoyed reading the comments on her phone - and she LOVES going to the mailbox everyday to see what letters people have written.  Thank you, thank you, thank you.

What's Next

When I arrived at Mom and Dad’s house this week, the first thing Mom showed me her basket of letters overflowing with notes from families and friends.  She encouraged me and Michael to look at them because they were all so wonderful, each in its own way.

In the past few days she met with the oncology team at St. Anne’s Hospital in nearby Fall River.  Everyone was kind, thoughtful and articulate as they outlined options for Mom.  She is going to go for chemotherapy and start off receiving Gemzar (gemcitabine), a standard chemotherapy drug that has long been used to fight pancreatic cancer.  The goal is to slow down the cancer to keep her as healthy as possible as long as possible and give her a little extra time.

From what her surgeon said last week and from what we had researched, this plan was what we had expected.  But when leaving the doctor’s office today, I realized that I/we had been still hoping and praying that they were going to tell us about a new miracle treatment or that perhaps her odds were going to be much different or perhaps this is all a terrible mistake.  But they did not.  Since it is an adenocarcinoma tumor in stage 4 in her pancreas, there are not many options.  Radiation is not recommended since the cancer has spread.  A more aggressive chemo regimen would make her perpetually very sick without the hopes of curing it nor really giving her that much more time.   As the doctor said today, “I would not recommend it for my mother.”  The doctors can only hope to slow it down, though it is known as an aggressive and merciless (that is my word, not the doctors) type of cancer.  The doctor said he hoped that the treatments would hold the cancer back so that she would not have many physical symptoms of its advance until the fall.

So there it is.  I am sure it is difficult to read in black and white.  It was certainly difficult to hear it today - but we had the benefit of being there with Mom in person.  Mom said, “today was a tough day,” but her strength and courage continue to inspire and amaze us. 

I want to share with you something she said, partly because it will show how amazing she is but mostly because I hope it give you some comfort.  "I am so grateful for all I have. I want what is ahead to be full of joy and family," she said, “I don’t always understand, but I am certain in my heart of hearts that God wants what’s best for me."

Dad is doing OK. Typical of Dad he is more worried about Mom than how all this will impact him. He is going to his pool excercise classes and gone out with friends for coffee. He was very glad to have all three of us "kids" here last week with him and Mom.

In the upcoming week, Mom goes for a baseline CT scan and will get a port through which they will administer the chemo.  Next week she will start the chemo, going one day a week for three weeks and then have a week off before starting it again.  We hope that she will tolerate the chemo well for many obvious reasons, but also because we hope she and Dad can go to their place in Florida for awhile.  She would be able to continue the chemo down there.  She wants to walk the beach, watch the surf, feel the sand and collect shells.

Mom finds beauty and joy in so many things, even these days.  She loves watching the beauty of the pond from their living room, watching Downton Abbey series on PBS, listening to classical music, watching birds at the bird feeder, looking at funny pictures of the grandkids, reading the poetry of Mary Oliver, doing New York Times crosswords puzzles, going to the mailbox and reading her mail.  Many things make her happy.  Mom loves it when she sees – either in person, in cards, etc. - birds, pennies, roses, angels, stars, elephants, sunrises and sunsets.

Today Mom and I are going to find a good way to display all the great letters that Mom has received so she can be surrounded by everyone’s love and good wishes. 

Shocking News

This letter was written on January 8, 2013.

Thank you so much for your prayers and good wishes. They have been so encouraging for Mom and all of us.

Yesterday Mom went to Brigham and Women's Hospital in Boston to undergo a laparoscopic surgery to assess the scope and stage of the tumor in her pancreas.  We all went with her (Dad, Katharine, Michael and I) along with Lydia, Mom's dear friend from seminary.  But we did not get the news we were hoping for.  The surgeon found several very small nodules that tested positive, showing that cancer had already outside of the pancreas.  This meant it was Stage 4, and that the main tumor was inoperable.  We were so completely stunned and devastated.  It just took our breath away.

After we heard the news, we waited what seemed to be an endless 45 minutes to see Mom in the recovery room.  When they let us in, we hugged her and told her how much we loved her, waiting for a flood of her tears, but she was so brave, strong and full of faith.  She knows how serious this all is, but said she is so glad she to be in a place in her life where is grateful for all she has and still wants to find joy in the time ahead. She said, "I know God is still here; I am still listening."

The surgeon recommended Mom try chemotherapy to try to keep the cancer in check as long as possible.  He thought this could be very helpful in slowing it down, especially since the cancer spots that have spread already were very small in size and number.  She has already appointments set up with the head oncologist at a well respected cancer center in Fall River.

When we returned from the hospital there were email messages in my inbox for her and letters in the mailbox.  It was so wonderful for her - and all of us - to read aloud so many messages of encouragement, love and support. Mom believes there is nothing greater than the power of prayer, so again thanks for your thoughts and prayers - and as she told a friend yesterday, "keep them coming."

With love and thanks,
Christiana, Katharine and Michael 

New Year's News

This letters was written on January 3, 2013.

Dear Friends and Family -

We hope the new year finds you well. Unfortunately, our family has recently learned of some difficult news and we wanted to share it with you. Our mom, Denise, has just been diagnosed with pancreatic cancer. This news has come as a complete shock to mom and our entire family. 

It seems like it's been caught early. There is hope and treatment options, but mom has a few tests and procedures to go through in the next week or two before a treatment plan is finalized. Physically mom is doing fine. The cancer was detected when she was undergoing follow up scans from what had been diagnosed as a pancreatitis attack last summer.  

Considering the circumstances, emotionally she is doing pretty well. The night she told us she also said that due to her life's journey she is a more optimistic and hopeful person - and we all know how very determined she can be. 

Both Michael and Christiana, along with her sister Patty, live close enough to be available to provide support right now with getting to appointments, etc. and to be on hand as we wait to learn more information. Katharine is making plans to fly east very soon to be with mom and us.

Our father, Ed, seems to be OK, though under his often stoic exterior he is very concerned, overwhelmed and worried about mom. Certainly we are carefully considering in our plans how to best support dad, both emotionally and logistically, in the weeks ahead.

At this point in time, mom's main priority is to rest and regroup. She wants to be "unplugged" from all emails, the internet and all phone calls.  At this point in time, she is not looking for visitors or folks to keep her company. There is a long road ahead of her and there will be many future opportunities for her friends to help and to visit. The best way to reach her is through mail. She loves letters - Lord knows she has saved everyone she has ever gotten! Her address is below. If you really prefer to email her instead, maybe you want to share it with one of us so we can print it out for her in case she is not reading emails.

Coming up on January 6th is our mom's favorite feast day - Epiphany, the feast of God being revealed to the world by those who followed the star.  For decades, she has enjoyed sharing star gifts and celebrating this day with family and friends; it has been also important to her on her spiritual journey as a pastor. This Epiphany or when you see stars, we ask if you can to think of mom - she would like that.

Thanks for keeping my mom and our family will be in your thoughts and prayers. Mom and the rest of us certainly believe in the power of prayer to help and support her. We promise to keep you posted how she is doing as soon as we learn more.

For a last note, I want to share something that mom sent us just this morning on her way to the hospital for tests. It was the bible verse for today from a daily devotional she subscribes to: 

Hebrews 10:35-36

"Do not, therefore, abandon that confidence of yours . . . for you need endurance."

She wrote this quote was "perfect and made me smile. So I hope it does the same for you." 

With thanks and love, 

Christiana, Katharine and Michael 

Denise Soares 

email christiana@jonesfamilyfarms.com if you want her address