As many of you know, I was diagnosed with a neuroendocrine pancreatic tumor in 2009. My tumor was small and slow growing, and I did NOT have regular pancreatic cancer. You may also know that this was my third cancer diagnosis, therefore, the title of my blog. I am grateful that you are reading this. I'm quite certain that your support and prayers helped me survive.
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:
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.
Life is not fair.
Give back to your community, to your friends and to your family.
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.
It never hurts to ask. (My mother taught me that one!)
Take time to smell the roses. (My father always told me that
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
Vagina (reconstructed using my colon)
Upper superior lobe of left lung
Several pieces of my large bowel
½ of my pancreas
…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
If you were at all inspired by any of this…a donation to
Swim Across America in honor of my 40th Anniversary of surviving
cancer would be so greatly appreciated.Help us Make Waves to Fight Cancer.
HAPPY 90th BIRTHDAY TO MY MOM
(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
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.
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.