Sunday, November 10, 2013

IT'S WORKING!!!


Greetings loyal readers!  YES, the carboplatin/ taxol regimen has significantly shrunk the tumors!  This is great news for us - buys me time to look for other treatments!  We were quite nervous, but feel a new path towards victory!
 

I have learned that I am among 2% of those with my condition (stage IV UPSC uterine cancer) who survive as long as I have. Wow!!  I want to know who that other gal in the 100 is who has survived!  And I extend sympathy to those who have lost this strange battle.  Will write more shortly!! xSal


Saturday, October 19, 2013

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


Saturday, September 28, 2013

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!!

Friday, August 2, 2013

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


Friday, June 14, 2013

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!!

Friday, May 31, 2013

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! 

Monday, May 20, 2013

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.





Wednesday, May 8, 2013

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!


Friday, April 12, 2013

ANOTHER YEAR OF LIFE!!

ANOTHER YEAR OF LIFE is a fabulous thing to celebrate!  I stay rooted in my life while I reach for the stars!

This journey called life has certainly been a strange one for me during the last four years.  But here I am - swimming towards eternity while keeping the shore in sight.

Certainly I have learned that healing my soul supports my earthly home - this body of mine.  Despite the wandering vampire cells (may you soon all find the joy of apoptosis) my life is rich and vibrant, enriched by so many amazing experiences and relationships.  I am surrounded by so much love that has enabled me to grow and thrive through this adventure.

So this is a note of thanks to all who have followed my path, and provided so much support.  BEth and I will be walking in a "survivor walk" tonight as part of a "relay to fight cancer" this afternoon.  I am determined to give back as much as I can as appreciation for my tremendous good fortune in surviving this journey thus far.

Much love and affection to all - an enormous hug across cyberspace!

Friday, March 29, 2013

LIFE AS A TRIAL!!

Greetings dear readers!  Happy Spring!! (Those of us in New England do believe that spring will indeed come...)  Another month gone by - many trips to Boston MassGeneral Hospital for the clinical trial.  So I'm a happy lab rat!  I've had three infusions with this new chemo - a biologic accompanying the chemo directly to the cancer cells.   Mass General is a fantastic hospital and I feel hopeful with this new treatment to extend my life.  Every day is precious!

Science Daily published this information (:http://www.sciencedaily.com/releases/2011/10/111028115340.htm)  "Large numbers of Follate receptors typically indicate the most aggressive ovarian cancers, as well as a variety of other cancers such as breast, lung and kidney, [and now uterine cancer].
The combination, called EC145, delivers a Vinca alkaloid directly inside cancer cells, improving effectiveness while reducing side effects particularly in women [like me] who "overexpress" folate receptors. A similar approach of pairing the follate ligand, which is attracted to the receptor, with a drug that makes those receptors glow, enables physicians to see how many folate receptors are present and who would be the best candidates for this treatment."

So is that enough science for one day??  at any rate, the hope is that I can continue to receive this combined treatment as long as, or whenever the cancer recurs.  Ah the blessed Vinca - yet another plant based miracle for us.  I plan to plant lots of it in honor of this new treatment!!

Meanwhile, Beth and I continue to speak up for Marriage Equality when ever possible - and applaud those who continue to work on this for us all.   Luckily for Beth and me, Massachusetts allowed us to wed, and importantly, gain health coverage for Beth.  THE TIME FOR MARRIAGE EQUALITY IS NOW!!!

Thanks for listening - your support gives me strength and hope!! xxx





Saturday, February 23, 2013

Hit the Target!!!

Well, a month - had second treatment, with steroids and nausea drugs - all going fine!!  The biologic carries the chemo directly to the cancer cells - GO APOPTOSIS!!  Seems that if my bod continues to handle this new form of treatment well, I will be getting treatment until remission reappears.  Since it goes directly to the cancer, there are few effects on bone marrow or liver, etc.

Gene research is teaching us so much about cells and solutions to the cancer dilemma.  Our bodies have the capability to support resisting cancers - by enlisting the power of our genetic make up we can do search and destroy missions!!

I see this as the new sport - hitting those cancer cells bulls eyes - sending those vampire cells to their well deserved transition.

Meanwhile I make the transition to chronic cancer treatment - and live my life day by day!

After 3.5 years of this dance, I am getting used to the fancy footwork!!  The crisis is over, and it's the ongoing living with it that takes a bit of getting used to.   Time to move from cancer victim to cancer survivor!!  So, you little biologic warriors, carry that payload and do the deed!  You are my oaken stake - send it in!!  The combination of chemo, loing support, creative spirit, and meditation... More on this new treatment to come...  Sal

Wednesday, January 23, 2013

LAB RATS UNITE!

Hi faithful readers!  New adventure - clinical trial!  I'll be testing a new drug that carries chemo directly to my specific cancer cells.  Next week I'll be in Bean Town for four days for the first cycle of the trial - hotel paid by the trial!  I'll use the time to get back to my expressive arts work and to write write write.

So I'm a guinea pig.  or a Lab Rat.  At least my cancer will contribute to the effort to seek new more effective treatments.  From what I understand, this new drug targets so called "receptors" enabling the chemo drugs to get through to the cancerous cells.  It is still an assault from outside (chemo poison) but hopefully for stage 4 folks like me, these kinds of drugs will send my cancer cells into apoptosis without too many side effects (happy crossing over, you destructive little buggers)!
Hope they don't make me wear rat ears - but whatever it takes!!  Still working on my insurance research... will keep you posted!  And RI is about to pass same sex marriage -at last!  Homophobia is a cancer that needs to be eradicated NOW!  And thank you President Obama- yes we do want to live in the land of the FREE!


Wednesday, January 9, 2013

VICTORY AND NEW BATTLES!

Victory - Louis Ulrich, SculptorDearest Loyal Readers!   The great news is that finally I have succeeded in reversing the denial of my insurance coverage for radiation.  It took me 15 months, countless phone calls, e mails, faxes, etc. to finally get Unicare to recognize that they need to pay the $107,000 for my treatment!

I am starting a campaign to enact legislation that will require hospitals to pre authorize with insurance companies for any treatment that costs more than $500.  As I have written in the past, Women & Infants always checked for me, but RI Hospital did not.  I think of patients who have limited formal education, limited literacy, limited English, or are too sick to pursue this grueling task.  Cancer patients don't need the added stress of fighting their insurance carrier!!

I said with each contact that if I didn't get satisfaction, I would go to the media.  I still plan to see if anyone if interested in the story even though I eventually succeeded.  In this time of fighting for a functional national health plan we need to put the insurance giants in their place - they are private profit making enterprises that earn their profits by collecting premiums and NOT paying for claims. 

So that's one burden out of the way.  Friday I travel to Boston for a CAT and a dr. visit to see if indeed the big C is still hanging out in my system.  Think SHRINK and REMISSION!!  Ta Ta for now...xx