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