Heading North Soon

Mom is still in the hospital and it's been a tough week for her.  They did not want her to leave there until she moved her bowels, so all sorts of measures were tried from medicines to a painful gastrografin enema.  Scans did not indicate a blockage, so they performed a colonoscopy yesterday.  The gastroenterologist found a partial obstruction he believed potentially caused by a tumor on the outside of the colon, though recent scans have not shown a tumor in that region.

We are flying out of here on Friday, waiting for the big snowstorm on Thursday to pass.  We will go from the airport straight to Brigham and Women's Hospital in Boston to be admitted to the hospital.  There her surgeon from the Dana Farber Cancer Institute will evaluate her to determine if she does have tumor constricting her colon, if surgery alleviate the blockage (resulting in a likely colostomy), and evaluate how her overall health and strength. Mom wants to keep pursuing options and the doctors think potentially there are some measures she can take. Mom's oncology team in Rhode Island has been wonderful in helping us sort through all of this, and we have great confidence in them and in her Boston surgeon to guide her and us through all of the upcoming the decision making.

Currently Mom is able to walk around, she is on a clear liquids diet and her pain level fluctuates from uncomfortable to severe pain at different times of the day.

A year ago when her surgeon first told her that it was stage 4 cancer and therefore incurable, he said that perhaps chemo could turn a life expectancy of "months into having months and months."  This was my initiation into the vague timelines given with terminal illness.  The surgeon was right - Mom has had many months and months, and overall it has been a wonderful year.  To use a similar analogy, I think some of the current options being considered could turn having just weeks into having weeks and weeks.  Of course, she and all of us want for time that includes a quality of life that makes it all worth it. Decisions are ahead - some will be made by mom, some will be made for her depending on what future evaluations determine.

After we got the bad news from the GI doctor about the partial blockage, there was a knock on the door and it was someone from the pastoral care team asking if we were interested in a prayer - and we said yes!  Mom is still finding comfort and strength in prayers - and in sunsets.  She gets out of bed to take pictures of the sunset she sees from her hospital window.

Thanks for your prayers.  We will keep you posted after what we learn on Friday and the weekend.

Update on Denise

Please keep mom in your prayers.  She is having a tough time right now.  She has been having bad abdominal pain for several weeks since being in Florida.  It reached such a high level of pain last Wednesday that she went to the emergency room and has been in the hospital since then.  She went through a battery of tests looking for an obstruction, new tumor masses, or infection.  What they did find among other things was abdominal fluid retention which could be a sign the cancer is more advanced than we thought.  Her doctor in Florida has advised mom to return to Rhode Island to be with her family and her team of Dana Farber doctors.  This news was a devastating surprise for mom; she felt like she was getting better and doing well all things considered.

However, mom is not being released from the hospital in Florida yet because mom is not able to move her bowels (likely due to pain medication but they looking for other causes) and because at certain times of the day the pain meds are not able to control her pain. We are not certain when she and dad will be leaving Florida - at the moment Patty and I are down here with them - but we hope we can fly them home within the next few days or within the week.  It will be very hard to mom and dad to leave her - they love it and they have wonderfully supportive friends down here.  But mom realizes she wants to spend time and treasure life, family and friends up back at the Golden Pond home.

I know you have many more questions - all of us in our family do too.  The doctors are being helpful but they are not able to give us a road map at the moment how exactly this is going to play out.  I will keep you posted when we know more, when she is going home to Rhode Island, when she might be able to visit or talk with people.

We are all so grateful for your love and support of mom and dad.

Love, Christiana, Katharine and Michael

PS She is not able to talk on the phone much - gets tired and has a very dry mouth at times.  If you were going to send her a letter, I would send it to the Rhode Island address:

979 Old Stafford Road
Tiverton, RI
02878

Epiphany 2014

Today the Feast of the  Epiphany - the feast of the Wise Men following the star to find the baby Jesus. It has always been one of mom's special days. A year ago on Epiphany, we were in Boston preparing for her surgical procedure to learn how advanced the cancer was. It was stunning and devastating when the diagnosis had come back as stage 4 cancer. All seemed very dark and very bleak, and the idea of following light, following a star seemed so relevant, important, and hopeful.

A year later, mom has followed the light and the warmth of our closest star, the Sun, and has traveled with dad back to Florida for the winter. She and dad got out just in time on the day snow and arctic weather descended on New England.

Mom received chemo today. Since the week of Thanksgiving, after she fully recovered from her ovarian cyst surgery in October, she is back on a schedule of receiving chemo every other week. All things considered she is doing really well, though there are days, especially late in the day, where she does not feel 100% and needs to take some pain meds and rest. Her blood tumor marker is higher than it was in October but has been stable recently. There are certainly times of high stress and frustration about setting up doctor appointments or worrying what is causing her to at times not feel well. However, Mom continues to have a great overall attitude. She and her granddaughter Graylin went outside on New Year's Eve at midnight to ring bells to welcome the new year and 2014; mom was excited about the new year. 

We all gathered in Rhode Island for Christmas. It was wonderful to have all of us be together, especially the grandchildren. The kids had a great time with their DeeDee and Vovo.

On this day of Epiphany, we thank all of you for being on this journey with mom and all of us this past year. Your love, prayers, good wishes and messages have meant the world to mom and us, and have helped us all to keep focused on following the light, following the joy.  Much love from us to you!  Happy New Year.

Mom and Dad hope to be in Florida through the winter months.  Their Florida address:

1550 NE Ocean Blvd B102

Stuart FL 34996

Photo of Mom and Dad in Rhode Island on January 2 before heading to the airport.

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

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