Reflections on Being a 40-Year Cancer Survivor

I am so lucky.  It might be a bit surprising to hear these words from someone who has had cancer 3 times.  First at age 21, then at 42 and then again at 53.  First time it was vaginal, then lung, then pancreatic.  Now, at age (almost) 62, I’m grateful and honestly feel lucky.  Lucky to be here.  To have a loving and supportive husband and two amazing children (both currently in medical school), and a brother who has been there for me from the very beginning. I had the very best parents anyone could have asked for, and I have the most extraordinary network of friends and family.  I could not be more grateful, and when I say, “every day is a gift”, I mean it with all my heart. When people hear my story for the first time, they often say, “You need to write a book!”.  My response is that I really don’t have that much to say.  If I did write one, it would be rather short.  Here is the abbreviated version of what would be a very short book:

Cancer sucks!

Life is short…enjoy it.

Focus on the things you have, not on what you don’t.

Happiness is a choice.  Choose to be happy.

Forgive.

Life is not fair.

Be grateful.
Give back to your community, to your friends and to your family.

Exercise.

Eat healthy food.

Spend money on experiences, not things.

Get rid of things that are not useful, beautiful or joyful.

Cherish your friends and family, and tell people you love them if you do. Tell them often.

Breathe.

It never hurts to ask. (My mother taught me that one!)

Take time to smell the roses. (My father always told me that one!)

Did I mention that cancer sucks?

OK…here are a few more details.

I was born in 1955 in Brooklyn, NY.  My mother was given a completely useless and ineffective drug called diethylstilbestrol, better known as DES.   It was supposed to prevent miscarriage (a completely natural and often a protective event for both mother and baby).  Instead, this horrific drug, promoted heavily by the pharmaceutical industry, wreaked havoc on the mothers who took the drug and the children that were exposed to it in utero.  In our case, my mother had pre-menopausal breast cancer at age 39, and I developed clear cell adenocarcinoma of the vagina at age 21.  Can you imagine that? And so it goes….I had a radical vaginectomy (yes, that is not a typo) and hysterectomy at age 21, just after graduating from college.  I somehow went on to graduate school at the Harvard School of Public Health (Masters degree), met my amazing husband, moved to California, got my Ph.D. in Epidemiology at the UC Berkeley School of Public Health, published my dissertation in the New England Journal of Medicine, had two children with the help of an amazing surrogate, got diagnosed with a neuroendocrine lung tumor at the age of 42, went on to do a bunch of other things (not in my original field of study), swam a lot, got involved with a great organization called Swim Across America, became a Health and Wellness Coach, got as healthy as I could get….then got diagnosed with a neuroendocrine pancreatic tumor…yes, the very same one that killed Steve Jobs.  

That was in 2009.  I had a big surgery called a Whipple…google it, you won’t believe it! I was 53 years old.   So, the past 8 years have been relatively uneventful.  I saw both of my kids graduate college and get into medical school, saw my dad (whom I adored) die, and I'm about to lose my mom.  For the most part, except when I get cancer, I’m pretty healthy.  I have a million (well not a million!) side effects from all the surgeries (8 in all, and about 22 hospitalizations over the years).  I have to mention just a few: lymphedema, a neurogenic bladder, chronic stomach pain, frequent bowel obstructions from all the scar tissue, have to be very careful about what I eat, have to be scanned more often than I would like, live with severe sciatica (which may or may not be related to my last surgery), and, of course, I live with the constant fear that I will get cancer again.  Having said that, I’m still thankful each and every day.  Sometimes people ask me to name all of the body parts that I’ve lost…..here goes: (in no particular order!)

Vagina (reconstructed using my colon)

Uterus

Cervix

Ovaries

Fallopian tubes

Appendix

Upper superior lobe of left lung

Several pieces of my large bowel

½ of my pancreas

Gallbladder

Duodenum

Liver rewired

…I think that’s it.

So, having lost all of these organs, most of which I believe are either overrated or at the very least, not essential, I can, in all honestly, say that I am grateful.  Grateful to still be on this earth.  Grateful that I have had the very best healthcare and excellent doctors and nurses, benefitted from great research, and have had really good health insurance.  (These are all things that I currently worry about for our country!) I am grateful to my family and friends, especially to my loving husband and kids.  I’m not sure where I’d be without them. 

If you find my story at all inspiring, please watch these two short videos to get a fuller picture.  If not, you just read the shortened, abbreviated, Cliff Note version of my life.  I hope you enjoyed it, and I hope to be around so I can write about what it is like survive cancer 50 or even 60 years!

If you were at all inspired by any of this…a donation to Swim Across America in honor of my 40^th Anniversary of surviving cancer would be so greatly appreciated.  Help us Make Waves to Fight Cancer.

http://www.swimacrossamerica.org/goto/teamsusansurvives17

https://vimeo.com/226376037

https://www.growingbolder.com/beating-cancer-one-lap-at-a-time-0-737153/

Diagnosed with vaginal cancer just 2 months after my college graduation.

This was taken the day I got out of Sloan Kettering in September 1977.

Taken about one-year post op.

My last (hopefully) cancer at Stanford Hospital, 2009.

 

Just about 2 months ago!  Taken in Grand Cayman Island.  Feeling very lucky and very grateful!

HAPPY 90th BIRTHDAY TO MY MOM
(This photo taken ~1980, the other one 2016)

   


   











     Today is my mom’s 90^th 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 90^th 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 90^th 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.