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.

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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.

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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