Monday, July 29, 2013

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

Thursday, July 4, 2013

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