Update

With apologies for being so long since posting; I know you have been wondering how Mom and Dad are doing these days.

They did go to Florida for a few weeks in November. She got the go ahead from her Boston surgeon that all looked good and she was okay to travel. Unfortunately for at least half their FL trip, Mom did not feel very well.  She had aches and pains, and generally did not feel good. The doctors were not sure if there was an infection from the surgery, so they put her on antibiotics.  When she still not feel better, they did scans looking for abscess or additional cysts, but they did not find anything.  When she felt better and was ready to get her first chemo treatment in over six weeks (she had to stop before and after the cyst surgery), the doctor said while her surgery incision overall looked great there was a very small section not completely healed. As a result Mom had to wait again and get clearance from another doctor before she finally received chemo on the Friday before Thanksgiving.

Since then Mom has felt really well, and is appreciative how good life is when one is feeling well. She and Dad flew up from Florida a few days before Thanksgiving. They spent Thanksgiving at the farm, and everyone thought Mom looked really great. We had much to be thankful for!

This week Mom has been going with Dad to several doctor appointments. He never complains, but he has been dealing with a cough, a shuffling walk at times, more hearing issues than usual and a flare up of psoriasis. The doctor ordered a chest x-ray yesterday and EKG today to rule out any time of infection or congestive heart issues. We expect he is okay but it is good they are making sure.

Mom has her next chemo next Monday.  She and Dad will be in the northeast through New Year's, and then plan to return to Florida for the rest of the winter.

Love from the tree farm! Christiana

Photo of Mom and Dad before heading off to Florida in November

For photos and to post comments, go to www.followingdenise.blogspot.com

You Will Heal Very Well

We wanted to let you know Mom's surgery went very well yesterday. (Sorry not to let you know earlier - the hotel we stayed at last night in Boston did not have a wi-fi connection.) The surgery lasted less than two hours, which was much shorter than expected. The surgeon said everything went well, there were no surprises and the two large cysts were removed. Mom was in a fair amount of pain when she first reached the recovery room, but she got better as the day went on.  

Today the doctors have said she is doing so well that she can probably go home tomorrow, on Sunday, just two days after the surgery. Mom has been up, walking around, eating well, and chatting with the nurses. She still does experience pain when she gets up from laying down or sitting, or when changing her position in bed, but after major abdominal surgery that is to be expected.  We will know tomorrow for sure if she will be discharged but she certainly is on the road to recovery.

Mom attributes much of her healing due to the great power of people's prayers and to positive thinking.  So many of her friends and our family friends have sent prayers and good wishes - we are all grateful.

At the suggestion of the hospital she read before the surgery, "Prepare for Surgery, Heal Faster", a book by Peggy Huddleston of mind-body techniques. Mom really responded to the positive messages in the book, using guided imagery to focus on healing and not on the pain. She had the surgeon read several healing statements during the surgery.  At the end of the surgery while she was still under anesthesia, he said, "Following surgery, you will heal very well so you can pick shells up at the beach."

So hopefully she will be able to pick up shells on the beach soon!  She and dad have plane tickets to go to Florida in a few weeks.  We will keep you posted.

Wisdom for Life

A much delayed entry . . .  partly due to the fact that for much of time Mom has been doing pretty well, and partly due to my life at the farm getting busy during pumpkin season.

Mom did have a very good September (more about that later), but she is currently dealing with two large ovarian cysts that need to be removed surgically. The doctors have been monitoring the cysts since May, but in the last weeks the cysts have grown to the size of grapefruits. Mom was feeling intense bouts of abdominal pain and found out after a trip to the ER one night that the cysts were pressing on her colon. The cysts are not cancer tumors but their growth is related to the cancer. As one doctor described it, they are by-products of the cancer.

Mom needs to be off chemo for about two weeks before having the surgery. Surgery is scheduled to take place on October 25 at Brigham and Women's Hospital in Boston. Being that it is abdominal surgery she will be in the hospital about three to five days.

Understandably Mom is frustrated how this issue with the cysts interfered with a planned trip to Rochester for her 50th high school reunion and visits with family. Also, she and Dad originally planned to drive to Florida this week to spend a month there before returning to RI for Thanksgiving through Christmas. If the surgery and recovery go well, she hopes they can still fly down to Florida for a few weeks before Thanksgiving.

The scans of the ovaries and surrounding area showed that the tumor in the pancreas is stable and has not grown, so that's good news. Hopefully it will continue to be stable as she will need to be off chemo for a few weeks due to the surgery.

Mom did have some very good times in September.  Over 30 of her college friends joined her and Dad for a lunch at the farm.  Mom went to the College of New Rochelle, an all women's Catholic college in New Rochelle, NY - that's where she met Dad.  The college's motto is Wisdom for Life.  Her college friends are a such a wonderful, warm, friendly, down to earth, interesting group of people.  As Mom told them that day, her college friends and college experience were not the wind beneath her wings, but the very wings themselves, bringing her to new heights as a young woman and supporting her now.

Another great time was when Mom and I returned to the eastern end of Long Island for a weekend trip. We visited the Montauk area where our family had our annual camping trip for over twenty-five years. It was a wonderful trip down memory lane - a perfect time capsule of our much loved family vacations.  Our trip was complete with a visit to see Jane, one of Mom's dearest friends and mother of my good childhood friend from when we lived in Baldwin. It was great to see Mom and Jane talking and laughing just like old times. Though things had changed so much for both - Mom dealing with cancer and Jane the loss of her beloved husband - they still had much to laugh about. When I wrote Jane after our visit to say how inspiring she was to me, she said she could not do without the three F's - Faith, Friends and Family. 

Mom will be looking to faith, friends and family in the next few weeks when she is in the hospital. Thanks for your love, good thoughts and prayers.

Let Us Rejoice and Be Glad in It

Mom has had a really great month, topped off with good results from a scan this week. The scan showed that the tumor is still less than an inch and has not grown. The scan also showed that there were not any new tumors. Mom and the rest of us were very happy with the news. The previous week she had a blood test that showed that the tumor marker has continued to decrease, and to now under 300.

Before these recent tests, Mom and the rest of us had taken a vacation from cancer when we all went to Cape Cod for the week. We had a wonderful trip. Almost every day we go to a great bay beach close to the house - the kids love how the changing of the tides create a whole new beach experience every time we go. It's a good place for Dad, with a pretty manageable walk from the car to the beach. It was so much fun to be all together - lots of great memories in the making.

Mom continues to do things that make her happy and keep her going. She preached at her church Labor Day weekend . . .  and she bought two dozen pink flamingos for her yard.  As she says, "they make me smile."  We will have to get a photo of Mom with her flamingos, but here's a picture of the whole family at the Cape. For the past few years, we have made some tie-dye shirts during the vacation. This year, because Mom loves stars, we each created and painted a star shirt.  Mom's shirt featured the star on a sand dollar.  This weekend Mom and Dad are looking forward to a mini-reunion we are hosting for their dear friends from the College of New Rochelle - where Mom and Dad met almost 50 years ago.

For photos and to post comments, go to www.followingdenise.blogspot.com

A Great Big Heart

We are off to Cape Cod tomorrow to spend next week with Mom, Dad, Katharine, Michael and me and our families.  It will be a great time. This is our 9th annual family trip to the Cape. For Mom and Dad it combines their favorite things - beach and grandkids.

Mom was able to successfully receive her chemo recently.  After her scheduled week off from chemo, her white blood cell counts were, in the words of her doctor, "excellent".  (Mom said it was so nice to hear him use the word excellent for something.)  After the first treatment in this round, to boost her white blood cells, she received shots at the hospital on WTF (that's Wednesday, Thursday, Friday - that's a little joke from the family reunion). Those shots helped so she was able to receive her next chemo on schedule. Also her tumor blood marker had gone down from the 800s to under 400. So that's all very good.  She really was really wiped out yesterday probably as a residual side effect of the chemo earlier in the week, but feels much better today.

Mom and Dad have been having a great time with Katharine and her daughter. Mom woke up with them several times this past week in the middle of the night to watch the Perseids meteor shower.

Also this past week Mom went Katharine and her daughter to the DeCordova Sculpture Park and Museum in Lincoln, MA. She enthusiastically exclaimed to all of us that this was her favorite museum of all time!

Photo of the Big Hearts Sculpture, a favorite of Mom's

Photo of Mom with the Great Big Heart

Photo of Mom with Newspaper Sculpture, 

joking she discovered the crossword puzzle.  

Hope this sculpture does not give her or other

ephemera collectors we know any big ideas.

For photos and to post comments, go to www.followingdenise.blogspot.com

A Starry Night

This past weekend Mom and Dad had a wonderful time at a family reunion and party at the farm. Folks came from as far away as Texas, North Carolina, Maine, Georgia, Pennsylvania and upstate New York. Mom loved having her sisters, her brother and their families all together - plus some of her cousins too. She also had friends there from elementary school through graduate school. Mom and Dad were able to meet a few young great-nieces and nephews for the first time, as well as connect with dear friends some of whom they had not seen a while. It was a weekend full of stories, laughs and great food that culminated with "A Starry Night" party in the barn. 

We hope to share some photos in the next few weeks, but I wanted to say a quick note of thanks to the many awesome people who helped Katharine, Michael and me plan and host the reunion. Also heartfelt thanks to all who were able to come - you being there is what made it so special.

As Mom said to everyone in the barn that night she has really felt lifted by everyone's prayers. Thank you.

Photo of Mom relaxing on the swings after the weekend.

For photos and comments, go to followingdenise.blogspot.com

Life Current

I recently finished reading Against Wind and Tide, by Anne Morrow Lindbergh, the book that Mom loved reading a few months ago. I really enjoyed Lindbergh's touching letters on motherhood, career, grief and nature.  Many passages reminded me of Mom, and especially this one:

"Prayer opens the heart and connects ...to a life current.There are other ways of being connected with the life current: being with people you love, seeing the beauty of a flying bird, or hearing music... One says thanks, and one's heart is suddenly infused again with the life current."

Mom continues to find great joy in nature - from the watching the families of turkeys that visit their yard to watching the sunsets on the pond. With Dad, she has been thrilled to attend operatic performances and a chamber music festival in Newport. Certainly she has been happy being with loved ones, mostly recently enjoying having Katharine and her daughter on the East Coast this summer.

Mom started her third type of chemo this month. Again, she has done amazingly well tolerating the side effects of the chemo. After the months of chemo now, her hair has become so fine that she has started wearing a wig at times.  

However, the chemo is very rough on her white blood cells. Her first treatment of Gemzar/Abraxane reduced her white blood cells counts to the lowest they have been; therefore, her next chemo treatment was cancelled. There was a fair amount of confusion and concern for her and us about all the ramifications of the low white blood cell counts - could she go out in public? was being with the grandchildren too risky? would the white blood cells be able to rebound? would she be able to do this chemo?

The following week her white blood cell counts did improve. She was able to receive a chemo treatment, and her doctor outlined a plan for her to receive shots of neulasta and neupogen on her chemo weeks to stimulate her levels of white blood cells. This week she has a scheduled week off from the chemo.  We will all keep praying and hoping - thanks for your prayers and wishes for her and us.

Mom, Dad and all of us are looking forward to having a family party this upcoming weekend for Mom and Dad.  It will be great to have the siblings, the grandchildren, the cousins, the second cousins and a few family friends together.  There should be lots of opportunities to connect to the "life current".

Photo of Mom and Dad before going to the Music Festival

 

Photo of recent Pink Sunset on Golden Pond

For photos and comments, go to followingdenise.blogspot.com

Riding the Roller Coaster

"I will write the next blog post after Mom's next test." That is what I have been telling myself over the past few weeks. But after that test, there is another test or another appointment that I think will shed more light on Mom's situation.  Some results have been good, others not as good, so we have been riding the cancer roller coaster the last few weeks with Mom.

To start on a good note - Mom still feels very well, with no symptoms from the cancer or major, lasting side effects from chemo. She certainly looks great. She does miss her daily walks on the beaches of Florida and freedom from many of life's responsibilities that their "Endless Summer" home provides them. Dad's doing pretty good.  He has recovered enough from an ear inflammation so he can use his hearing aids again which is a good thing.

On the medical side of things, Mom usually cannot receive full chemo treatments due to the way it negatively affects her white blood cells. The Folfox regimen of 3 chemo drugs was reduced to 2 and then reduced to 1 to soften the blow to her immune system.

The second issue of concern has been her rising blood tumor marker. CA19-9 is a protein that all of us have in our blood, but for many with pancreatic cancer it is elevated. The tumor marker is one piece of information that the doctors use to sense what the cancer is doing. Every patient is different, every tumor is different, so in some ways the numbers are relative.  From our understanding, it is an indicator and when it goes up, it could perhaps indicate cancer spread (and therefore, resistance to the chemo).

So her marker started at 151 in January and then went down to 111 after her first treatment. Over the winter months, it edged up a little bit each time. When it reached 179, her Florida doctor switched chemo. It went up a little more to 198 then 205. But then two weeks ago it doubled it more than doubled to 442. Her doctor suggested a CT scan to check the tumors progression. We were fearful of the results, but the scan was pretty good as far as pancreatic cancer scans go. The main tumor in the pancreas had slightly shrunk and the several other lymph nodes spots had not significantly changed. We were relieved!  And therefore we were shocked just days later to learn that her tumor marker had climbed to 3552!  

Yesterday we met with a gastrointestinal oncologist in Boston at the Dana Farber Cancer Institute. In this a huge, beautiful building, it was sobering to think how everyone we saw was in some way dealing with cancer. We liked the doctor a great deal. He carefully reviewed her history, saying he too was surprised about the elevated tumor marker since her scans looked good. He had her blood retested. The marker went down to 1100. So that was better than 3552 but the doctor thought it was a significant increase over the last few months. He recommended that she change her chemo to Gemcitabine with Abraxane. She can receive it her local cancer center (which is part of the Dana Farber network) starting next week.

Ups and downs. We wish the marker was not so high. We wish Mom did not have change treatments yet. The upcoming chemo treatment is the last of the approved chemo plans for pancreatic cancer. After this runs its course, only clinical trials are left if she wishes to pursue that.

On the top of our gratitude list we are grateful mom is feeling well. She is the first one to say that. We are also glad that Mom has continues to find joy in the day to day. She seems to particularly enjoy doing things with the grandchildren or talking about them. She went to her church last Sunday to thank God and to thank everyone for their prayers. She was glad to have her sister and brother-in-law visit last week, and grateful for all the yard work they did trying to tame the yard after a month of rain. Mom has been to the local opera company a few times and really enjoyed it. Mom and Dad went to the cancer center's annual Survivor Gala Dinner; it had a Roaring 20's theme and Mom dressed the part. She answered the final trivia question of the night about 1920's, and for that won a very beautiful book of artwork and essays by cancer patients and caregivers. There are many inspiring essays and quotes in the book; I will try to include one in a future post.

For photos and comments, go to followingdenise.blogspot.com

Return to Golden Pond

Below is a posting I started a few weeks ago. Here at the farm, strawberry season has begun so I have not been around computers as much. Today I am in bed with in ear infection so trying to catch up on a few things.

Although they miss the beach and palms trees, Mom and Dad were happy to return to their house on Golden Pond.  

Mom tolerates her Folfox chemo treatments pretty well, experiencing intermittent fatigue and at times extreme sensitivity towards cold drinks, objects, etc. Her white blood cell counts have been good.  Her blood tumor marker has gone up a little, but her doctor is pleased, believing the new chemo is keeping the cancer in check at the moment. As the doctor in Florida told her, "it's a shitty diagnosis." And it is. While thoughts of "why" and "what's next" are there, lurking in the background, Mom does seek out joy each day and lives in the moment. Many people are touched by Mom's positive attitude and are amazyed how she looks so good.

In the few days I spent with Mom and Dad in Florida helping them pack up, there were many, many good times. We visited very dear friends whom we knew from our years living on Long Island. We went to a bible study class at a church; during it everyone there laid hands upon her asking God for healing and miracles. We hit the local thrift stores one more time. We walked the beach at sunrise and walked out to the river one night to see sunset.

On our last morning in Florida, I got up at 5:30 in the morning to see if I could spot a sea turtle nesting on the beach. The previous morning the researchers had marked many nesting sites, but the turtles had already made their way back to the sea before daybreak.  In the almost darkness, I found a set of turtle tracks that led up to the dunes. When I saw the turtle there, I called Mom to come over to the beach. By then the researcher was there, and she invited us to come closer right next to the 150 pound turtle. It was amazing to be so close watching all of the turtle's intricate moves.

Now back home Mom and Dad are watching sunsets on their pond and enjoying the nice breezes they get their at their house.  Last weekend, Mom got to be with her church family, leading the communion service. Mom is happy to be back in her yoga class as the cancer center; she just loves it.  Mom and Dad have gone to visit Michael and family for a few days; I took the kids there last weekend; Katharine and her daughter are coming to the East Coast for July and August. We're looking forward to doing things together this summer.

Photo of sunrise last morning in Florida.

Photo of Mom and Dad in Florida.

For photos and comments, go to followingdenise.blogspot.com

Against Wind and Tide

While Mom has read many of Anne Morrow Lindbergh's books numerous times, for the first time she read Against Wind and Tide, a collection of letter and diary entries. Mom just loved it, highly recommends it for everyone to read. I have yet to read it, but from just the title alone I can see how the book would speak to Mom.

Mom still feels well, but her blood tumor marker continued to rise over the past several weeks. Her doctor ordered a CT scan which showed the tumor in her pancreas is about the same size as it was in January, but worrisome spots on her ovaries. A PET scan was ordered. We just found out yesterday that the PET scan revealed that the spots on the ovaries were not cancerous.

Since her blood tumor marker is higher than it was when she first started her chemo regimen, the doctor in Florida (in consultation with her doctor in Rhode Island) believed it was time to switch to new chemo drugs. Yesterday Mom received her first FOLFOX treatment. It's a longer treatment lasting over three hours. Then for 48 hours she wears a small pump in a fanny pack which slowly administers one of the medications.  There is a whole range of potential side effects; the doctor said each patient is different. The most likely ones would be great fatigue and extreme sensitivity in her hands and feet. Mom continues to remain positive, always looking for any silver lining there might be in a report. She and all of us hope and pray for the best.

Dad and Mom have another week down in Florida. They have had recent terrific visits with dear friends who live there. Mom's sister Patty was with them this past weekend; it was great that she could be there for yesterday's doctor appointments and chemo treatment.  I will fly down this weekend to be with them and then fly back with them back to Rhode Island.

In her walks on the beach in recent weeks, Mom has enjoyed finding sand dollars. With friends and even people she meets on the beach, she asks if they know the legend of the sand dollar.  Apparently many do not, so Mom explains how it looks like there is a Christmas poinsettia on one side and an Easter lily on the other. The people are always amazed when she breaks open a sand dollar open to release the five white "doves" so they can see them.  I smile thinking about Mom, the "Sand Dollar Lady", walking down the beach with her silver sand dollars earrings swinging in the breeze, sharing her joy and the doves of peace with everyone.

Photo of Mom's doves

For photos and comments, go to followingdenise.blogspot.com

Pennies, Sand Dollars and a Rose

It has been awhile since my last posting and I hope that you have guessed correctly that the length of time between the posts has been due to the fact that Mom doing really very well.  She looks terrific and is very happy that she is feeling as well as she is. That makes all of us happy too - and so very grateful.  (She and the rest of the family are also SO grateful that our dear cousin was not injured in the Boston marathon. He crossed the finish line an hour before the explosions. Ours hearts are with him and everyone in Boston.)

Though Mom feels well, the world of cancer has not completely disappeared. Mom has continued to get her chemo on a weekly basis and has gone 1 to 2 additional times a week to get neupogen booster shots.  The shots do seem to be bolstering her white blood counts so she was able to receive three 75% chemo doses in a row.  She is tired on treatments days but overall she is tolerating the chemo treatment pretty well.  Next week they will test the tumor marker in her blood.  It has edged up a very small amount since its initial decrease when the chemo began.  If it it still trending upwards after the next blood test, they will do a CT scan to check how things are going.  Mom and Dad plan to stay in Florida through mid-May.

Michael, Katharine and their families recently visited with Mom and Dad, and had awesome times.  Mom wrote in a recent email to the three of us, "Each visit with you and your children has been so fun and so full of unexpected discoveries and joys. Feeling well. Hope Monday blood work is good. We are truly blessed...our cup indeed overflows! XOXOXOX MOM"  

We have been sharing with you some of Mom's treasures she enjoys discovering during her frequent walks on the beach.  During Michael's visit, they found on two occasions pennies washed up on the beach.  Mom's mom, our Nana, enjoyed finding pennies as signs of upcoming good luck.  For Mom and the rest of our family, finding a penny is also a sign of Nana being with us.  Mom has found pennies in some interesting and unusual places especially in the last few months (and me too).

During Katharine's visit, they started finding many sand dollars on the beach!  Do you know the Legend of the Sand Dollar?  Mom says the "doves" inside are the largest ones she has seen, so she is collecting sand dollars and doves.

Another recent "gift from the sea" was most unusual - one morning when the surf came up to Mom it left at her feet a real long-stem red rose!  Roses are another favorite of Mom's. When a woman passing by inquired about it, Mom told her how she found it.  The woman laughed that maybe it was from a proposal, and maybe even the person said no.  Mom said she replied, "Well, I say YES."  So glad that Mom enjoying life's gifts and saying yes to them.

Thanks for your continued good wishes, thoughts and prayers.

Photo of Mom looking out at the Beach

Photo of Penny on the Beach

Photo of Sand Dollars

Photo of the Rose

For photos, comments and their FL address go to followingdenise.blogspot.com

Gift from the Sea

“Patience, patience, patience, is what the sea teaches. Patience and faith.
 One should lie empty, open, choiceless as a beach—waiting for a gift from the sea.” 

― Anne Morrow Lindbergh, Gift from the Sea

Mom has always loved Anne Morrow Lindbergh and her book Gift from the Sea. Mom's walks along the beach are certainly acts of great patience and faith, joyfully searching for the gifts of the day, be it a special shell, a beautiful sunrise, the patterns in the sand.

Her medical appointments are also exercises of patience and faith - waiting for tests, results, analysis and hoping and praying for the best. Yesterday at mom's chemo appointment, she was able to receive a 50% dose. It seems the neupogen shots were able to bolster her white blood cell counts enough for her to receive the treatment, so she will return for shots again twice this week. Next week will be her week off from chemo.

A few folks have asked about Mom's special shells mentioned in the last posting.  "Smoothies" are pieces of shells that have been polished by the sand and surf to a super smooth finish.  For Mom, the keepers are the ones that fit perfectly between her thumb and other fingers. "Angel wings" are bits of scallop shells that are reminiscent of wings, and  Mom looks for the curve of the shell and the patterns of colors to be just right before declaring it a true "angel wing" for her collection.

During my trip to Flordia, I realized a gift from the sea can come when and how you least expect it.  One morning, I went to meet Mom at the beach at sunrise, but I could not find her anywhere.  I was getting pretty anxious about where could she be.  The surf was dangerously rough - but it seemed crazy to think that she would have gotten literally carried away.  I finally reached her by phone - somehow we had just missed each other back at the condo complex and she was on her way over.  I sat down on the sand with great relief, starting to appreciate the sunrise with a new frame of mind now that I had "found" Mom.  While I was sitting, a woman walked by with her black lab and holding a large beautiful shell.  When she said she had just found it close to where we were, I thought to myself it was too bad I had not found that shell for Mom.  The woman walked down the beach but then returned a few minutes later and offered me the shell. I said that was too kind but no thank you.  She insisted.  I thanked her very much and told her that I would give it to my mother.  I am glad I got to introduce the woman, whose name is Debra, to Mom the next day.  Mom asked if she had ever read Gift from the Sea.

Photo of Mom holding a heart rock

Photo of Mom with the "Gift from the Sea/ Gift from Debra" Shell

Nice photo of Mom and Dad heading out to the St. Patrick's Day party at the condo

For photos, comments and their FL address go to followingdenise.blogspot.com

Endless Summer

Mom and Dad are truly soaking up all the good things that their Florida home offers them – the bright sunshine, the sounds of the surf, and good friends.  I am so lucky and happy to be seeing it all first hand as my family and I have spent the last week in Florida with them.

Mom’s first FL chemo appointment last week on March 1st went well.  Dad went with her; Mom said he was perhaps a bit overwhelmed by the large medical complex.  Her blood work looked good so her doctor prescribed a 80% dose of chemo. 

Yesterday Mom had her second chemo appointment.  When the nurse came back with the blood work results, she braced us that she did not think there would be chemo since the white blood cells counts were low.  But doctor decided to proceed with a 50% dose, though he wanted her to return two more times this week to receive neupogen shots to help boost her white blood cells.  Hopefully this will work so she will be able to receive chemo next week.

Over the last few years, Florida has been a welcome retreat for Mom and Dad during the winter months.  When they bought their condo last March, Mom named their new home Endless Summer.  This year Endless Summer is providing the perfect place to find many moments peace and joy.

Mom gets up early every morning while Dad is still sleeping and walks the beach, reveling in the early sunlight streaming through the clouds.  She combs the beach looking for treasures – shells that she has given her own special nomenclature: angel wings, smoothies, hearts, sunrise shells to name a few. For each one she takes home, she must pick up a hundred or more. For Mom, each morning is a gift, each with a unique combination of surf, sun, sand and shells.

Photo of Sunrise

Photo of some of Mom's Heart Shells and Rocks

My kids have just loved spending the week with DeeDee and Vovo.  They have seen sunrises and sunsets with Mom, and enjoyed everything in between.  It has been a great time that none of us want to end – we are all loving our time together during our little "endless summer".

Photo of DeeDee, the kids and me at the seawall by the farmers' market

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

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