REINCARNATION!!

The strangest thing happened to me yesterday - Beth calls from her job to ask - have I checked Facebook today?  No, I was working - but immediately went to my page.  An old friend whom we don't see often these days had posted that I had crossed over - yup - that I had bit the dust, kicked the bucket, etc. etc.  After pinching myself several times and being sure I have a shadow (!) comfirming that yes, indeed I am still here in the flesh, I immediately responded that I am indeed ALIVE AND WELL!!  Actually, before I was able to correct this misinformation, several people wrote lovely things about me - hold those thoughts, friends!!  (Nice to know my legacy has a postive slant ...)

Of course, as always with this big C journey, events such as this give pause to contemplation.  Mortality, legacy, loose ends!   A reminder that I must indeed give away some more of my books, clean up my studio, weed my garden, and tell those I love I LOVE YOU!!!  I've also heard recently that yet another acquaintance has moved on beyond cancer and this world.  This is always a reminder of how fortunate I am that my body and my determined spirit are not ready!  I am so lucky that I have been able to respond so well to treatment, and that I have such an amazing circle of support.

So what do I want my legacy to be?  What do I want people to remember?  Certainly, that I found the love of my life with Beth, that I had the amazing experience of raising Jim and Dan, that I have a fabulous family and circle of friends.  Also, of course, I hope anyone who chooses to recall my life will think about my passions - for social and economic justice, for the right to literacy and education, and of course my gardens. 

I am starting a memoire about some of the amazing experiences I have been fortunate to participate in.  I feel I have been "an extra on the stage of life and social change."  I was an eager but minor participant in civil rights activities in North Carolina and Georgia - activities that changed my life and my spirit.  I had the wild experience of being part of the "underground newspaper" The fabled "Great Speckled Bird" in Atlanta.  I was part of the Venceremos Brigade, early (not yet legal) expedition to Cuba to learn about the best of the socialist revolution.  And I have spent my life exploring and serving the need for literacy and reading skills for all.  In addition, I have supported the exciting efforts to gain our rights as LGBTQ members of society, with the exciting results this year of a law approving gay marriage in RI!!

So, dear readers, I am thrilled to be still here with all - glad I didn't come back as a slug! 

Laughing at Cancer!!

So my doctor - the stylish Dr. D - is now a cancer comedian!  Yes!  We all need to laugh at cancer sometimes.  Dr. D. remembered the time I had called about a lump and a pain in my abdomen.  I didn't want to travel to Bean town if I didn't have to, so he asked for a picture.  I sent him a headshot - wasn't sure why he wanted a picture of me, but, hey, he is my doctor.  Actually he wanted a picture of my abdomen!  We definitely laughed together.  Dr. D wrote this about humor and cancer:

"In general, laughter and humor do not come to mind when one talks about cancer. Oncology is a serious endeavor aimed at treating a life-threatening condition. Our profession and our patients compel us to stay abreast of new findings and new treatments, to engage in a conscious and thoughtful discussion about next steps, and to always be honest. Indeed, as I look back, nowhere in my training or practice has anyone ever said, “But remember to laugh.”

In reality, patients want to be treated as people, not a condition, and part of the way we can do that is to engage them beyond the realm of cancer. We do it already when we ask about how a spouse or a child is doing, what plans are in place for a weekend, or just a simple “how are you?” But we can do more, especially for patients we have known for a long time. Sharing a joke, an anecdote, and a laugh are as human as holding one’s hand. In addition, as this small paper reminded me, at times, laughter can also be the best medicine."  (from the "ASCO Connection")    Hey - we all need a chuckle!  Who among us doesn't pull out the "cancer card" on occassion (helps to get to the front of the line...)

So I get all the laughs I can - and having a doc who shares my comedic sensibility is grand.   I do think my hearing isn't that bad yet....  

Reposting - Caregiver's Story

Hi all - am finally reposting this article so all can fully read it - thanks to Cameron St. James!  Universe blessings for caregivers!!  Check out next blog coming soon!!

I was a caregiver to my wife, who suffered from mesothelioma cancer. She has told me that she cannot comprehend how difficult it must have been for me, and I have only brought up the subject to her once. I hope to share more freely with the following story.

Our first and only child was born three months before my wife was diagnosed. We went from being joyous to being afraid and uncertain about the future. When the doctor told us it was mesothelioma, I looked at my crying wife and wondered how we would deal with the situation. I was very overwhelmed with emotion as the doctor informed us of the choices we had and the difficult decisions still ahead.

Right after the diagnosis, I experienced severe anger in which I had difficulty controlling myself, and I often used profanity. Over time, realizing that I needed to be there not only for my wife but also for my daughter, I regained emotional control. While I still had slips, I made an effort to show strength in my wife's presence and give her something to lean on.

One of the most valuable lessons I learned was how to prioritize my time. My list of tasks was endless, involving our daughter, our pets and making travel arrangements. I managed to accomplish what I needed to by focusing on the most important things and accepting help from other people when I needed it. We were fortunate that so many people cared and wanted to help. Even so, I felt weighed down by all the responsibility I was carrying.

Following Heather's surgery in Boston, there was a period of two months that was extremely difficult. She was in South Dakota with her parents and our daughter, who had been staying with them. The purpose of the trip was to allow Heather recovery time between the surgery and the next step in her mesothelioma treatment, which was radiation and chemotherapy. During this 60-day period, I saw my wife and daughter only once, after driving 11 hours through a snowstorm. I had left work on Friday and had to return by Monday, so it was a quick turnaround trip that left me little in the way of quality time.

Despite how difficult it was to be separated from my family, I do not look at that dark period as any kind of loss. Having Heather and Lily stay with Heather's parents was the most sensible thing to do, as I would not have been able to care for her on my own and still go to work each day. It was something that had to be done and only one of the many challenging decisions we were forced to make. I was grateful we still had the ability to make those choices.

During that time, I learned that it was okay to let others help me and take some of the burden from my shoulders. It helped us both feel like we were still in control during all the uncertainty. Through all of our struggles, Heather is still here and still healthy over six years later. I hope that our story can be a source of hope and help to those currently battling cancer.

Guest Author:Caregiver's Story....

Dear Loyal Readers:

1. About a month ago I received an e mail from Cameron St. John, who had discovered my blog.  

   He asked if I could put his story on my blog.  One important element of support for those of us 

   who are patients and caregivers is our connection to each other, as only we understand the

    impact of this disease on both patient and caregiver/family.  It is with please that I introduce

    this honest and hopeful story - another tale of love and survival!  Here is Cameron's story:

   
   

   .A Caregiver's Story

   
   I was a caregiver to my wife, who suffered from mesothelioma cancer. She has told me that she

    cannot comprehend how difficult it must have been for

    me, and I have only brought up the 

   subject to her once. I hope to share more freely with

    the following story.
   
   Our first and only child was born three months before

    my wife was diagnosed. We went from 

   being joyous to being afraid and uncertain about the

    future. When the doctor told us it was

    mesothelioma, I looked at my crying wife and

    wondered how we would deal with the situation.

    I was very overwhelmed with emotion as the doctor 

   informed us of the choices we had and 

   the difficult decisions still ahead.
   
   Right after the diagnosis, I experienced severe anger in which I had difficulty controlling myself,

    and I often used profanity. Over time, realizing that I needed to be there not only for my wife but 

   also for my daughter, I regained emotional control. While I still had slips, I made an effort to 

   show strength in my wife's presence and give her something to lean on.
   
   One of the most valuable lessons I learned was how to prioritize my time. My list of tasks was 

   endless, involving our daughter, our pets and making travel arrangements. I managed to

    accomplish what I needed to by focusing on the most important things and accepting help from 

   other people when I needed it. We were fortunate that so many people cared and wanted to

    help. Even so, I felt weighed down by all the responsibility I was carrying.
   
   Following Heather's surgery in Boston, there was a period of two months that was extremely

    difficult. She was in South Dakota with her parents and our daughter, who had been staying 

   with them. The purpose of the trip was to allow Heather recovery time between the surgery and

    the next step in her mesothelioma treatment, which was radiation and chemotherapy. During 

   this 60-day period, I saw my wife and daughter only once, after driving 11 hours through a 

   snowstorm. I had left work on Friday and had to return by Monday, so it was a quick turnaround 

   trip that left me little in the way of quality time.
   
   Despite how difficult it was to be separated from my family, I do not look at that dark period as 

   any kind of loss. Having Heather and Lily stay with Heather's parents was the most sensible 

   thing to do, as I would not have been able to care for her on my own and still go to work each day. It was something that had to be done and only one of the many challenging decisions we were forced to make. I was grateful we still had the ability to make those choices.
   
   During that time, I learned that it was okay to let others help me and take some of the burden

    from my shoulders. It helped us both feel like we were still in control during all the uncertainty.

    Through all of our struggles, Heather is still here and still healthy over six years later. 

   I hope that our story can be a source of hope and help to those currently battling cancer.

   
   

   Note to all: Responses welcome - let's keep the support conversation going!