A New Point of View

It has been a few weeks since our last update, but we are happy to report that Mom and Dad are in Florida. The sway of the palm trees, the bright sunshine and the rolling waves at the beach are even sweeter after experiencing two back-to-back weekends of blizzard conditions before they left.

Physically Mom continues to feel pretty good and look great.  The week of Valentine's Day was to her "off week" from chemo. However she was very concerned by the time she got down to Florida and set up a schedule with the oncology team there, too much time would have elapsed between treatments. (Setting up appointments with the Florida doctor and hospital turned out to be a huge frustration and stress, with lots of red tape, but that's another story.) If you remember, the previous week the doctor could not administer the chemo due to her low white blood cells and platelets.  But he agreed it was good to check and test her blood again before she left. Good news - her blood count levels had rebounded to pre-chemo levels. Mom was able to receive a 50% dose of chemo.

Over the years, Mom has known many friends and church members who have cancer and been through chemo. She even did her clinical pastoral education internship at the very oncology center where she is now a patient.  But for those of you who deal with cancer know that a person does not truly know the emotional roller coaster of cancer until you have it yourself. What made me think of this was Mom getting that 50% dose that day. She was so glad to learn that her blood levels had recovered, but then quickly disappointed to find out that the doctor thought she could only handle a 50% dose. Ups and downs, downs and ups.

But on an up note - the weekend after this treatment was wonderful. Katharine, Michael and I and our families gathered at the Golden Pond house for a Valentine's Day celebration with Mom and Dad.  And then making it all the more memorable, Mom's sisters and brother and their families came too! They came long distances despite blizzard forecasts - but remember, Mom and her siblings grew up in Rochester, NY, so they're a hardy stock. It was awesome to be all together - we have a really great family. Mom and Dad just loved seeing everyone. It was a special joy to see the young cousins, the next generation, play with each other. Despite the freezing cold, the kids enjoyed sledding down my parents' deck into the great lawn. Their thrills and near spills as they went farther and farther provided much entertainment and excitement to those watching inside.  

Photo of the Whole Clan

Mom and her Sibs

Photo of Golden Pond day of Family Reunion - with lots of Valentine/Nana clouds at sunset

One more story. . .   Forty-eight hours after the last of us left their house, Michael drove Mom and Dad to the airport. Dad's cousins met them at the FL airport - they had arrived in the sunshine state, ready to relax. However, the next morning, Mom discovered that one of their carry-on bags had been mistakenly left on the wheelchair that Dad used in the FL airport! That bag had their laptop, but even worse for Mom in it were special books, letters and mementos that friends and family had given her. Anyone would be upset, but for Mom, being on life's wild roller coaster, was devastated. After what seemed to be a very long 8 hours, the FL airport called to say they found the bag, with all contents intact. It was found strapped onto the back of the wheelchair.  Hallelujah! Thank you, St Anthony! St. Anthony, the patron saint of lost things, was well known in our household growing up, as often keys and other things went missing. St. Anthony came through in a big way this time - helping to find the bag, the laptop, the books and Mom's peace of mind.

PS.  I know we keep saying thanks for all your notes and letters - they are so great. On their first day in Florida, when Mom was so upset by the missing luggage, a ray of light was going to the mailbox and finding letters in there waiting for her. She holds them near and dear to her heart.

For all letters, pictures, comments and their FL address go to followingdenise.blogspot.com 

Valentine's Day

Hope you all had a nice Valentine's Day.  Mom sent us a Valentine's Day text this morning at 7:15 am - it was a photo of Golden Pond with the trees laced with snow in the morning sunlight.

Mom had some very well deserved and unexpected good news this week.  Her doctor called to tell her that a tumor marker they are following in her blood work dropped about 33% after her first two chemo treatments.  He said this is a good sign that the selected chemo drug seems to be having an impact on her tumor.  Mom said, "I think all the prayers and support really do help."

I was so happy to hear the news - it totally made my day.  Up to that point, it had been one of those irritating days where all the small things were going wrong (at least I had the perspective that in scope of everything, they were just small things).  It started in the morning when I accidentally brushed my teeth with diaper cream mistaking it for my tube of toothpaste. (I don't recommend it - it is difficult to wash out.)  But Mom's phonecall made all of that grumbling disappear.  It was great to hear about the chemo's effects, and it was SO nice that Mom got good news for once.  It seems like at so many turns in the past six weeks the news was worse than anticipated - but not that day!  We are grateful.

Mom and Dad leave for Florida on Wednesday after our family's Valentine's Day gathering this weekend.  I imagine instead of pictures of a frozen New England pond, the future blog postings include images of beautiful surf and beaches.

Their Florida address is:

1550 NE Ocean Blvd B102

Stuart FL 34996

Much, much, much thanks for all the great mail - including those mysterious and fun crossword puzzles.  It is a high point of many of her days hearing from all of you.

For all letters, pictures and comments go to followingdenise.blogspot.com 

Blizzard

The Blizzard of 2013 hit Tiverton on Friday. Due to the impending storm, Mom's doctors moved up her chemo treatment to first thing that morning.  However, after her blood test, they told Mom that her white blood cell count and her platelets had dropped even lower so that she would not be able to get her chemo treatment that day.  She was undoubtedly disappointed, but tried to focus on what the doctors were saying - that chemo was certainly having an effect on her, and that potentially it was having the same negative effect on the cancer.  It helped that this news was delivered by Sue, an extremely kind, wonderful, compassionate nurse at the oncology center.

As the snow started to fall, Mom and her sister Patty decided to have a Downton Abbey marathon session starting at the beginning with season one.  As they became fully immersed in the stories of Mary, Matthew, Carson and everyone, the winds began to really blow.  At 9 pm, Mom and Dad's house lost power.

The next day they woke up to about two feet of snow.  Katharine, Michael and I worried about how they would fare with just the fireplace to keep them warm and Patty's car cell phone charger.  With the roads closed and impassable, we knew we could not go and help.  (In Connecticut, Michael had about two feet of snow and Christiana about two and half feet of snow.)  However, by 3 pm on Saturday, friends and neighbors Jay and Mike plowed their long driveway, replenished the wood supply in the house - and then the power came back on!  

We are having a family Valentine's party at Golden Pond this weekend (hopefully the weather will behave).  Katharine and her daughter are there now, spending the week. For many, many years our family used to create handmade Valentines for each other.  We thought this was a great year to revive the tradition and share it with our kids.  The following week Mom and Dad go to Florida to enjoy some well deserved sunshine.

Golden Pond during the Blizzard

Sunset One Day Later

For all letters, some pictures and comments go to followingdenise.blogspot.com 

Darkness and Light

This is another letter Mom wrote to her church but I think all her family and friends will like to hear her words, her voice.

Sunday February 3, 2013

Greetings and Blessings to my dear beloved friends,

My “epistle” to you begins with one of my (and Ed’s) most favorite and most repeated words from the beginning of Paul’s epistle to the Philippians:                 

I thank my God every time I remember you, constantly praying with joy in every one of my prayers for all of you, because of your sharing in the gospel from the first day until now. I am confident of this, that the one who began a good work among you will bring it to completion by the day of Jesus Christ.  It is right for me to think this way about all of you, because you hold me in your heart, for all of you share in God’s grace with me . . . For God is my witness, how I long for all of you with the compassion of Christ Jesus. And this is my prayer, that your love may overflow more and more with knowledge and full insight to help you to determine what is best, so that in the day of Christ you may be pure and blameless, having produced the harvest of righteousness that comes through Jesus Christ for the glory and praise of God.  . . . Yes, and I will continue to rejoice, for I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance. It is my eager expectation and hope that I will not be put to shame in any way, but that by my speaking with all boldness, Christ will be exalted now as always in my body, whether by life or by death.

It has only been five weeks since our lives here have been turned upside down and inside out,  but it has been a very long 5 weeks!  I have not shed any tears until this past Wednesday evening when I learned that my scheduled Thursday 8:40 am surgical appt at St Anne’s (to have a port inserted) was again cancelled at the last minute! (The port was necessary for me to get chemo the next day). This past Thursday was one of the most difficult, most stressful, most tearful, and most angry days of my entire life. To make a long-story short, after a deluge of phone calls, they finally scheduled me for 2 pm but it did not happen until 7:40 that evening and we got home at 9:30 pm.  We learned the next morning that the entire fiasco had “gone to the top” involving even hospital president.

But the “worst of times” includes the “best of times.” On Thursday we met the most supportive and compassionate and spiritually-connected nurses. (So very grateful our daughter Christiana could be at my side the entire day.)  Friday brought additional disappointments when we learned my white-cell blood had dropped so low that I could only get a 50% chemo treatment.  We thought that those blood-count problems would come in months ahead and not this soon. Even my oncologist was somewhat surprised.

But after chemo on Friday, Christiana drove us to Hull, MA in order to attend an all-day retreat on Saturday at Glastonbury Abbey in Hingham, led by one of my favorite Andover Newton Seminary professors (also a published poet). Ed and I have been to other longer retreats at Glastonbury Abbey during my seminary years also led by this same professor (Mark Burrows). The theme of this retreat was “I Believe in Nights” - based on the professor’s recently published translation of Rainer Maria Rilke’s early prayer-poems.  My friend Lydia told us about it and so nice to have Christiana participate as well.  (If you do not know Glastonbury Abbey, it’s worth checking out!)

The incredible synchronicity of Rilke’s seeking and seeing God’s light and love “in the night” and in the “darkness” was just amazingly powerful and positive for all of us. There were about 40-50 people there and it was exhilarating to be in such an attentive, responsive group of people. LOVED EVERY MINUTE OF THE DAY! 

Christiana leaves for home at noon. Michael arrived later to visit and watch Super Bowl with Ed. Katharine and her daughter Graylin arrive next week and we are planning a family Valentine feast on the 16th! And then my siblings and some of their children will have a bigger family celebration/reunion here on Sunday the 17th.  If things can stay as scheduled for next 2 weeks, Ed and I will fly to Florida on Wednesday Feb 20th and arrangements have been made for me to continue chemo down there.

So far I have had no ill-effects from the chemo and just hoping my blood count this week allows getting even minimum chemo dosage. I thought that by now I’d be in a routine and have more time to get in touch with each of you but the days have been full to overflowing with medical and family phone calls, appointments with lawyers and doctors.  I have begun both Yoga class and also Tai Chi at St. Anne’s. Except for past Thursday I have been positive and happy and enjoying the deluge of letters and cards from our many friends through the years! Thanks you for your cards, soups, prayers and love.

Inspiring words for me today from today’s lectionary readings:

Jeremiah 1: ⁴ Now the word of the Lord came to me saying, ⁵ Before I formed you in the womb I knew you, and before you were born I consecrated you (and) ¹⁹ I am with you, says the Lord, to deliver you.

Psalm 71: ¹⁴ But I will hope continually, and will praise you yet more and more.  

1 Corinthians 13: ¹² For now we see in a mirror, dimly, but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known. ¹³And now faith, hope, and love abide, these three; and the greatest of these is love.

I miss you and love you and pray for you.

Denise

Picture of Golden Pond, Sunset February 3, 2013

For all letters, some pictures and comments go to followingdenise.blogspot.com

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.