BACK IN THE SADDLE!

Greetings dear loyal readers!  Sorry I have missed several weeks - unfortunate new developments...  despite four different kinds of treatment this year, my buggies have continued to grow - so I'm back in chemo.  THINK SHRINK!!   While this new growth (a significant tumor in my abdomen) is not the news I hoped for, I am thinking POSITIVE and am determined to evict these unwanted tenants.  This recurrent disease is indeed a challenge, but I am determined to beat the odds!

The good news is that I had my first carboplatin/ taxol treatment yesterday, and it went very smoothly.  Today of course is the steroid high day - I cleaned house and we worked outside in the yard.  We got our load of wood for the wood stove and moved it to stack for the winter.  We put away our deck furniture and trimmed some stalks as the garden goes to bed.  It felt so fabulous to be outside enjoying a wonderful fall afternoon!

So now at least the government is reopened (what a circus that has been).  This means that federally funded cancer research can again go on.  Of course, while 800,000 people went without income, the congress continued to receive salaries AND had their gym open!  What a country...time for revolution!

Being part of a huge national strike against this domination by big money is on MY bucket list!!  Until next week... xxx

When Cancer is Chronic...Focus on LIFE

So chronic recurring cancer is indeed a bit surreal!  Dear readers, I am truly doing fine - still working full time, living my life (with emphasis on LIVING!!)  The knowledge that these buggies are still there is the surreal part - will they grow?  Shrink?  MELT??

So I embrace each day and thank the universe that I am still here with my love Beth, our (now calm and happy) pup Hubert, our beautiful yard in the amazing New England autumn.

Our Unitarian congregation does much support work for programs supporting the homeless population in RI.  I remember so distinctly those 7 years at Travelers Aid - the many amazing folks I met whose lives had landed them in shelters and on the streets.  As we always said - most of us could be little more than a paycheck away.  Once homeless adults have at least a semi permanent place to live, opportunities for education and employment are of course key.  Programs like Amos House's Friendship Cafe and other training programs that put folks to work are major models to address homelessness.

But of course until we reform our political economy, and address the growing distance between wealth and poverty, and the gradual erosion of the middle class, we will only see MORE people pushed into poverty.

I call this the "melting middle"  !  And until we stem this melting into poverty, until we stimulate education and job creation, this global melting will spread and continue.

So I celebrate my continued LIFE and look to continue speaking out for social justice, jobs with justice and opportunity that doesn't pit the middle class against the poor.   So I'm going to hang around as long as I can to work towards this shared future.  More to come... I fight not only cancer, but the ills of our society!!

MIND BODY POWER!!

Well loyal readers, I went to see Dr. D today and found that indeed the big C is continuing to grow slowly in my spl

spleen, but he feels a new regimen - Avastin - will block further growth.  Avastin - clinical name bevacizumab - actually stops the growth of new blood vessels.  This will hopefully stop the growth of the spleen tumors.  So a new treatment adventure!  More days in the IV recliner - a chance to write, dream, draw and concentrate on SHRINK!! 

Of course, I wish there were no new growths, but it's what it is.  The great news is that I am continuing to work with Expressive Arts to bolster my immune warriors and to self heal.  I attended the Expressive Arts reunion conference several weeks ago, and was once again inspired by the amazing work being done by graduates of this wonderful program.  Research shows that Expressive Arts (visual, verbal, movement and sound) actually have a physiological effect - reinforcing the immune system and our ability to self heal.

I am reading an interesting book by a physician who has been studying mind-body connections and our ability to self heal.  The Doc,  Lisa Rankin, has done a great deal of research about stories of self healing and spontaneous cures.  She seems a bit of a self promoter (her picture on the book cover could be used on a dating site)  but the information is powerful. I continue to talk to my cancer and invite apoptosis for the dear little vampire cells.  Otherwise, I continue to work full time, try to keep up with garden weeding, and do my expressive arts work.  Thanks for reading - will try to be more regular!! xx

DANCING IN THE RAIN!

Greetings loyal readers!  Yes, I'm off the clinical trial - new buggies in the spleen - but on new chemo - meghase and tamoxofin.  No wierd side effects yet (I'm no wierder than usual...) and so happy that summer is here!  Yes we have had mucho rain this month - but luckily no flooding for us.  Poor Hubert the Hound does NOT like going out in the rain.  Luckily he has learned to wait to do business - he's becoming a great pooch and fitting right in!

Beth and I and Hubie are indeed dancing in the downpours - we know the garden is happy!   I've got tomatoes, basil, snow peas, chick peas, egg plant, and the last of our delicious lettuce.  Don't know if the beets are going to make it - but herbs are doing well, as well as our lovely perenniel flowers.  

So keep dancing friends - it's the only way to go!!

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.