Sunday, January 22, 2017

(This photo taken ~1980, the other one 2016)



     Today is my mom’s 90th birthday.  There is so much I want to tell her and explain to her, but my mom has Alzheimer’s.  Notice I said she  “has” this horrific disease, and I did not say she “suffers” from it, because I do not believe she is suffering.  In her own quiet and very sweet way, she is dealing with it and appears to be in a happy, or may I say, content place.  I’m pretty sure her condition might be harder on me and those that love her than on her, but I also know that my mom would have never wanted the final years of her life to be like this.  Above all else, I want to thank and pay tribute to my mom. She is unable to read this blog, nor is she even able to understand what I want to tell her.  She might not even know who I am, but I want the world to know what a wonderful woman she was and still is.  
     She taught me more than she will ever know, particularly, how to be a survivor and a fighter. My mom is a DES-mother, which made me her DES-daughter.  We both had cancer at very young ages caused by the totally ineffective drug given to my mom during her pregnancy with me….my mom had breast cancer 51 years ago at the young age of 39 in 1966. Treatment for cancer at that time was nothing less than barbaric.  My mom underwent a radical mastectomy, which I am sure was quite painful…however, when she came home from the hospital, she never once complained or ever acted sick or played the “why me” or the "cancer" card.  In fact, it was quite the opposite, and she was back to being 100% mom in every sense of the word.   
     So, where did I learn about survival? Who has always been my inspiration?  I learned from her that cancer did not have to be a death sentence (although it could have been for both of us).  What an experience for us back then in 1966 and 1977, when no one even said the word cancer.  So, just about 10 years after my mom’s diagnosis, when I was diagnosed at age 21, I knew exactly what I had to do. I wanted to live, and she was my role model and inspiration every step of the way.  To those of you who knew my mom, she was the ultimate “Jewish mother”.  She was selfless to a fault.  She cooked, cleaned, car-pooled, volunteered everywhere, worked as a geriatric social worker, and she did it all quite seamlessly. She was never a complainer, and seemed to love everyone and everyone appeared to love Edna.
     And so today, on her 90th birthday, I wish more than anything I could talk to “my old mom”,  the one I laughed with, talked to every day, shopped with and with whom I shared recipes and secrets.  She had so may little life lessons for me….much of what I learned was unspoken, but I learned by watching her give to her community, her friends and most importantly, her family, especially to my dad, “her Billsy” with whom she was married to for 65 years.  I wish I could be half of the caregiver my mom was. But, life doesn’t always turn out the way you think or expect it to.  I’m sad that I live so far from her.  Luckily, she is in a good place, with wonderful people taking care of her.   
     Happy 90th Birthday, Mom. You have lived a long and meaningful life. You were and still are the funniest person I know, and you are beautiful both inside and out. You have touched everyone you have ever met in the most wonderful and positive way. I miss you and I love you more than you can imagine. Yesterday I marched for a better world for everyone....then I watched 20th Century Woman...a movie with a DES story line.....all I want to do is call you today to talk about the March and the movie.  So sad that I can't, but I will call to wish you a very HAPPY BIRTHDAY.

Friday, August 19, 2016

7 Years….Why I Swim…and work for Swim Across America

     It has been a very long time since I posted on this blog, but since tomorrow is an anniversary for me, I decided it was time.   So here goes:

     Tomorrow, I will “celebrate” seven years since my last surgery for neuroendocrine pancreatic cancer.  It is also 18 years since a tumor in my lung was removed, and 39 years since I underwent a 10 ½ hour surgery for vaginal cancer when I was just 21 years old. That is why I swim.  I swim because I can, and because so many others cannot.  I swim because I am one of the lucky ones who has benefitted from extraordinary research and great medical care which have both saved my life each time I had cancer.  I swim because I am so fortunate to have made it through 3 different cancers, 8 major surgeries and way too many hospitalizations to even count, and I have come out the other side.  I swim because just 7 years ago I spent 23 days at Stanford Hospital, unable to eat, and thought I would never swim or do anything ever again.  That’s why I swim and why I work tirelessly for an organization I love, Swim Across America.  As the SF Bay Area Co-Event Director, my goal is to help fund the scientists and physicians here in the Bay Area who are working so hard find a cure and to hopefully, one day, cure all children diagnosed with a pediatric cancer. I want to help bridge the gap between NIH funding and what is really needed. I swim for so many people who have suffered from and died of cancer.  There are far too many to name, and I swim in their honor and in their memory.  I work for Swim Across America because it is my small way of giving something back to the universe because for whatever reason, I am one of the lucky ones.  In my own small way, I hope to inspire, motivate and encourage others to keep trying and to keep going even when it seems hopeless.  In my lifetime, I have personally seen how far we have progressed in cancer treatment, and I am proud to contribute in any way possible to the goal of successfully curing all children diagnosed with this dreaded disease.  It is the least I can do. Oh, one more thing.  I swim because I love to swim!

Sunday, December 1, 2013

A Special Tribute to our "Little Daisy"

     Much has been written about what you can learn from your dog.  Today, we put our little Daisy, a.k.a. Shmooshie, down.  It was the saddest thing I have ever done.  It was time.  Daisy was diagnosed with cancer just about one year ago.  The vets, at the time, told us she had maybe 3-6 months, maybe a little longer.  We got almost a full year more with her, which, of course, wasn’t enough.   She was so sweet and loving, and she fought like hell to stay with us right up until the very end.  But today was the day; it was the right time for her, but not for us.  We loved her so, so much.  I, for one, learned so much from our “Little Daisy”.   She was almost 12, and we had her for almost 11 years.  She was a rescue Tibetan Terrier/Poodle mix, and she most definitely helped me raise David and Aly.  Daisy knew how to live and how to teach,  and definitely knew how to get her way all the time.  She would look at us with her big black eyes and we would melt.  She was totally spoiled and we loved to spoil her.   We will miss her dearly, and never forget all the joy she brought to our family. 

This “poem” has been around for a long time, but every word in it is so true.  The author is unknown, but anyone with a dog could have written it:

Everything I Need to Know I Learned from my Dog

When loved ones come home, always run to greet them.
Never pass up the opportunity to go for a joyride.
Allow the experience of fresh air and the wind in your face to be pure ecstasy.
When it’s in your interest, practice obedience.
When someone is having a bad day, be silent, sit close by and nuzzle them gently.
Let others know when they’ve invaded your territory.
Take naps and stretch before rising.
When you’re excited, speak up.
If you stare at someone long enough, eventually, you will get what you want.
Don’t go without ID.
Run, romp and play daily.
Thrive on attention and let people touch you.
Avoid biting when a simple growl will do.
On warm days stop to lie on your back on the grass.
On hot days, drink lots of water and lie under a shady tree.
When you’re happy, dance around and wag your entire body.
No matter how often you’re scolded, don’t buy into the guilt thing and pout…run right back and make friends.
Delight in the simple joy of a long walk.
Eat with gusto and enthusiasm. Stop when you’ve had enough.
Be loyal.
Never pretend to be something you’re not.
If what you want lies buried, dig until you find it.

If it’s not wet and sloppy, it’s not a real kiss.

Wednesday, August 21, 2013

What a difference 4 years can make!

        Four years ago yesterday, on Aug. 20, 2009, I had a grueling 6 ½ hour surgery called a Whipple procedure.   I had a tumor in my pancreas, but I’m happy to say that I had the “good kind of pancreatic cancer”.  Mine was neuroendocrine, the same kind that killed Steve Jobs, but it did not get me!  Here is what WebMD has to say about the Whipple procedure: For some pancreatic patients, a complex surgery known as the Whipple procedure may extend life and could be a potential cure. Those who undergo the Whipple procedure have a five-year survival rate of about 20%.  The classic Whipple procedure is named after Allen Whipple, MD, a Columbia University surgeon who was the first American to perform the operation in 1935. Also known as pancreaticoduodenectomy, the Whipple procedure involves removal of the "head" (wide part) of the pancreas next to the first part of the small intestine (duodenum). It also involves removal of the duodenum, a portion of the common bile duct, gallbladder and sometimes part of the stomach. Afterwards, surgeons reconnect the remaining intestine, bile duct, and pancreas.

         The Mayo Clinic website says: The Whipple procedure is a difficult and demanding operation for both the person undergoing surgery and the surgeon.

         If you have read my blog, you know that that was my 3rd bout with cancer.  The first when I was 21, the second at 42 and this one when I was 53.  I’m 57 now, about to turn 58, and next week I’m heading to the East Coast to attend my 40th high school reunion.  Truly, I never thought I would get this far!

         But, back to this anniversary - August 20th, 2009.  I often say that I have the worst memory of anyone I know.  I blame it on all of the anesthesia I’ve had (eight surgeries total).  But there are things I remember rather clearly – like the three times I’ve been diagnosed.  Just the words alone hit you so hard, like being punched in the gut. Just three little words, but they carry so much weight. ‘You. Have. Cancer.’  I’ve heard those words three times in my life, and I pray that I never have to hear them again – to me or to anyone I know or love.

         So, four years ago…I spent 23 days in the hospital at Stanford, or “The Spa” as we called it.  It’s difficult to describe what it is like to spend 23 days in a bed, basically, bound to the wall by a series of IV tubes, spending the better part of most days vomiting.  I had an incisional pain, abdominal pain, pain in my throat and ears from a naso-gastric tube, hip and back pain…you name the pain….I had it. But then again, I was on a morphine drip…and so my pain was muted, and there is so much I don’t remember. I had nothing to eat or drink for 23 days.  I wanted to eat so badly.  I spent many hours of each day watching the Food Network.  The doctors thought that by doing so, it would wake up my digestive system, which was totally and utterly unresponsive to anything.  

         And so, that is the condition I was in 4 years ago.  But now, 48 months later, I am a totally different person.  I swim 7 days a week, dance, do yoga, work with a personal trainer, have a busy Wellness Coaching business, and work for an organization I love called Swim Across America.  I’m alive and so, so grateful for each and every day.  My goal in life is to try hard to enjoy it…and I do!  I’m grateful to my wonderful husband, my two amazing children, my extended family, my network of friends, my meaningful work, and exercise!  What more can I ask for? 
          I’m trying to make a difference through my coaching work and through Swim Across America.  If you feel so inspired by reading this blog, please click on my link and donate.  The money raised goes directly to pediatric cancer treatment and research in the Bay Area.  My goal is to get 36 people on my team (you can join as a swimmer, kayaker or volunteer), and to raise over $36,000.  I’m so glad you are in my life and are taking the time to read my story. Thank you so much.

Sunday, August 4, 2013

36 Years!


         Today is a very special day for me….and on some level a bit weird.  One that I’ve written about before, and even though it comes around each year, I can’t quite believe that what happened to me 36 years ago really happened.  But it did.  Thirty-six years ago today I underwent a 10 ½ hour operation for clear cell adenocarcinoma of the vagina.  It was caused by a drug (DES) that was given to my mom when she was pregnant with me. I was 21 years old and I had cancer.  I had many organs removed.  Now, looking back, it seems surreal, yet I remember it as if it were yesterday.  The diagnosis, the treatment, and the recovery – which was extremely scary and very difficult.  I had to learn how to live with a whole new body and bodily systems that didn’t function as they did before the surgery.   Quite frankly, I never really believed that I would make it to 57!  But I did, and two more cancer diagnoses  (one at age 42 (lung) and one at age 53 (pancreas)), eight surgeries, and at least 20 hospitalizations later, I am grateful and feel extremely lucky to be here.  I am blessed with a wonderful and supportive husband of 27 years, two amazing children who bring me so much pleasure and joy as I watch them become interesting and enthusiastic adults, work that I love and a very loyal network of friends and family.

            How does one celebrate such an auspicious anniversary?  The best way I know how…I’m about to go for a nice long swim and enjoy a simple dinner with my family.  Actually, I try to celebrate my survival daily by living each day with intention, gratitude, exercise and meaningful work.  Right now, I’m in the thick of planning for the 2013 Swim Across America San Francisco Bay Swim.  Swim Across America raises money for cancer treatment and research through swimming events. I am the co-event director in SF, and while this is supposed to be a part-time “job”, it seems to take up most of my time as we get closer to the date which is October 5th.  I am also the captain of Team Susan Survives – and my goal this year is to get 36 people on my team – as swimmers, kayakers or volunteers and hopefully raise over $36,000.   In the past 7 years, since I became involved with this organization, Team Susan has raised over $200,000.  How does one celebrate surviving cancer 36 years since my first cancer (and 15 since my lung and almost 4 since my pancreatic)?  By giving back….and asking everyone I know to help.  No donation is too small.  I thank you in advance for helping me “make waves to fight cancer”.   I also thank you for being in my life and for playing some role, large or small in my survival journey.

To find the Swim Across America page for Team Susan Survives, go to:

And remember: