Celebration of Life for Edna Helmrich

Jan. 22, 1927- Aug. 29, 2019

(October 20, 2019 - Wiltwyk Golf Club, Kingston, NY)

Good morning and welcome to each and every one of you who made the trip and took the time to come to celebrate my mom, Edna Helmrich.  I am so glad you are here.

She was born on January 22, 1927 in Brooklyn, NY and she left us on August 29, 2019.  She lived for 92 ½ years…about 5 years longer than she probably would have liked.  

Edna, or mom, or Grandma or Nana or whatever you called her lived a wonderful life.  Most of it spent with the love of her life, Billsy (William Helmrich), to whom she was married for 65 years. They adored one another….and while I often thought they were total opposites, I never once saw them fight and they totally understood one another.  

My mom was truly my hero and my role model.  She taught be how to be a mom, a wife, a friend and even a cancer survivor.  She had breast cancer far too young, before it was OK to even say the word, and at a time when you really didn’t talk about it or tell anyone. I watched her handle her illness with such grace and strength that when I was diagnosed 10 years later, I knew exactly how I was supposed to handle it…the same way she did. With courage and dignity.

My mom was funny and smart.  Smart about life and about people.   She “got “ people. She understood everyone and for the most part, everyone loved Edna…she volunteered everywhere Weight Watchers, Boy Scouts, Brownies, PTA, synagogue, Sisterhood, Hadassah, B’nai Brith (which were all the same organization as far as I was concerned)….and she loved her work as a geriatric social worker. And she was the best bargain shopper around.

If you knew Edna, then you were familiar with her wisdom.  In case you might have missed some of her “Ednaisms”, here are a few:

On health:

“M” is for Milk you need to drink plenty, not tea or coffee before you are twenty.

You will catch a cold if you go out with a wet head.

On life:

A journey of a thousand miles starts with but a single step.

That’s why they make vanilla and chocolate… and throw in strawberry. 

Age is a number, hers was unlisted.

It never hurts to ask! The worst that can happen is they will say no.

On fashion:

Plain is shane.  When in doubt, wear black.

On Sex: from here up is all his, from here down is all yours.

On Marriage:You should definitely try on the shoes before you buy them!

On relationships:  Every pot has a cover.

Always be nice to everyone.  Every person is someone’s child.

On Ego:

If you think you’re so great, can you make a hole in this glass of water?

If you were embarrassed about something you did, Edna would tell you no one would remember it the next morning (and she was usually right!)

I miss my mom….a lot.  When she was well….we talked on the phone every day, sometimes it was for just a minute, sometimes for an hour.  When she told me a secret she would ask me to “kiss my pinky”.  When she bought me a present, she told me she got me an “S” for surprise. Even during these past 5 years as her dementia worsened, she has been there for me in my mind and in my heart.  I remember her strength, her zest for life, her sense of humor and her warmth. I recently read a Modern Love piece in the NYTimes about death and in it it said, "Death ends a life, not a relationship." She is still my mother, I am still her daughter.  That will never change.

Preparing for Surgery #9...or is it #8?  And...this is NOT cancer!
It's hard to imagine that someone might not be able to remember how many surgeries they have had....but it's true.  I'm preparing for #9, although it might be only #8.  If you know anything about me, or my health history....I have had cancer 3 times.  I was 21 when I had it the first time, 42 the second and 53 the third.  In between there were bowel obstructions and many, many complications from all three cancer surgeries.  So now, after suffering from excruciating sciatic pain for the past 10 years, I am giving in to the recommendation to have a nerve decompression surgery.  This one should be minor, compared to the many MAJOR surgeries I have endured, but I'm terrified, nonetheless.  I've put it off for so long, and if I don't have it, I might be facing some nerve damage down the road.  I have tried EVERYTHING...and I mean everything in the past 10 years to alleviate the pain.  During the past 8 months I have not had one pain-free day!  Scary, huh?  In fact, I wrote about my sciatica (in a piece called "MY SCIATICA) about 9 years ago, and quite surprisingly, everything I wrote then is basically still true today.  I've shown this to many people, and most people have told me to publish it somewhere....so I'm self-publishing it here:

My Sciatica

I have survived 3 bouts of cancer, 8 surgeries, so many hospitalizations that I have lost track, but now, I truly believe that sciatica might actually kill me. I have been dealing with minor hip pain for several years, but it got significantly worse last year when I spent 23 days on my back at Stanford Hospital recovering from a huge Whipple surgery (feel free to Google it!) to treat neuroendocrine pancreatic cancer.  The diagnosis of this tumor took about 8 months and during that time I underwent octreatide scans, CT scans, MRIs, ultrasounds, biopsies – you name it, I had it.  During that time, I also got more medical advice than I ever thought I’d receive about what to do, where to go, who to see, etc.  But, I have to say, that was absolutely NOTHING compared to what I have experienced dealing with an excruciating pain (did I say excruciating?) from my left buttocks shooting down to into my foot.  I describe it as an electric volt shooting down my leg, or at times it feels like someone is taking a knife and slicing through the nerve running down my leg.  This pain started out as a bit of an annoyance, but in the past 5 months it is gotten exponentially worse. The pain is so severe at times that I cannot walk, sit, stand or lie down, and I’m not kidding.  OK, so what advice have I received?  I need to write this in a list form so you can get the full effect.

Rest

Don’t rest – move

Get a better chair for your desk (cost ~$700)

Move your computer screen higher

Have your legs at a 120 degree angle from your hips when you sit

Stretch (Just do these simple stretching exercises daily and the pain will go away)

Don’t stretch – the nerve doesn’t want to be over-stretched

Weight train (your muscles are too weak)

Don’t weight train (your muscles are over-worked)

Your muscles are too tight 

Your muscles are too loose

One leg is shorter than the other

You have poor posture

Your abs are too weak

Swim

If you do swim don’t wear fins, kick, do flip turns, or do breaststroke

Don’t swim

Use heat

Use ice (cryotherapy)

Combination of ice and heat

Tylenol and Ibuprofen 

Cook with turmeric, take turmeric but only curcumin

Use other dietary supplements including fish oils and SAM-E

Use Arnica

Take painkillers – but don’t get addicted

Take Gabapenten/Neurontin

Take Cymbalta/Duloxetine or other antidepressants

Don't take anything - nothing gets nerve pain

Do yoga, but only do Iyungar

Do yoga, but only therapeutic 

Don’t do yoga – it can make things worse

See an Ayurvedic doctor

Find out if you are Earth, Fire, Water, Air or Ether and treat accordingly

Find out if your doshas (Vata, Pitta, Kapha) are out of balance

Do Pilates

Don’t dance

Dance

Acupuncture

Physical therapy

Massage therapy

N.M.R. – neuromuscular reprogramming

A.R.T. – active release therapy

Osteopathy

Heller Body Work – but only 11 treatments at $200 each will work

Cranio-sacral massage

Chiropractic

Cortisone injected into L4-L5

Cortisone injected into S1-S2

Cortisone injected into the hip, buttock, etc.

Cortisone injected anywhere

Lidocaine injections into the piriformis 

Intravaginal pelvic floor manipulation (Not kidding! Cost $800 per visit including injections above)

Get a morphine pump inserted or an implanted drug infusion (Not kidding!)

Get back surgery (see a neurosurgeon or an orthopedic surgeon - I saw both!)

Stop drinking coffee

Drink coffee

Stop drinking wine or any alcohol

Drink wine or any alcohol

Try medical marijuana (any form, CBD, THC, smoke it, eat it, use the cream)

Buy a new bed (We did.  Cost $5,000)

Sleep on your side

Don't sleep on your side 

Sleep on your back

Never sleep on your stomach

Buy an inversion device to hang from (Got one. Cost $350)

Have a spinal fusion/discectomy or micro discectomy/foraminectomy for my herniated discs 

Get a nerve block or a radiofrequency ablation of the nerve

Do TENS (Transcutaneous electrical nerve stimulation)

Do PENS (Peracutaneous electrical nerve stimulation)

Have a spinal cord stimulation implant

Have bioelectric therapy

Meditate

Do biofeedback

Have Reiki work

Read Dr. John Sarno’s books: The Mindbody Prescription and Healing Back-Pain; the Mind-Body Connection (The premise: talk to your brain – tell it you won’t take it anymore!)

Don’t do too many things at once

So, despite the advice about not doing too many things at once, I’ve tried just about everything on this list.  (I’m not kidding!)  And I believe I’ve spent approximately $100,000, some of it covered by insurance, most not.  I’m sorry to report that NOTHING has worked.  Yes, I’ve gotten some relief from some of the treatments, but it is generally temporary, or fleeting might be a better way to describe it. I’ve said several times to my amazingly patient, and need I say worried husband, Richard, that my diagnoses of cancer were much easier to deal with than this crazy diagnosis of sciatica.  Well….maybe it’s sciatica.  It could also be, but not necessarily …..(another list):

A very, very tight IT band

An impinged sciatic nerve

An impinged obturator nerve

An impinged sural nerve

Piriformis syndrome

A very tight QL (Quadradus Lumborum)

A bulging, compressed, or herniated disc at L4, L5, S1 or S2

Lumbar spinal stenosis

Spondylolisthesis (when a bone in the lower part of the spine slips forward and onto a bone below it)

Pudendal nerve entrapment

Arthritis/bursitis

Impingement/compression syndrome

Trauma to my spine

A build-up of too much scar tissue from all of my previous surgeries

A congenital condition (see next item)

Scoliosis (which I definitely do have)

Bone spurs in the lumbar spine

A tumor pressing on the nerve (could you imagine?)

So, where do things stand?  Early on in this process I saw an osteopath who tried very hard to tell me that I was mostly likely harboring some terrible thing in my life that I wasn’t dealing with. The energy she felt was just so blocked up – it had to be something.  “What are you afraid of? not dealing with? not being honest with yourself about?….come on, there is something blocking your inner energy fields.”  Honestly.  If my internal coping mechanism of denial was causing this excruciating (did I mention that this pain is really, really severe?) pain, then maybe all I needed to do was to go see a shrink?  The problem there is that I happen to live with one, and a really, really smart one, and I think he would be quick to acknowledge that I am not harboring any “inner demons” as the osteopath suggested, and I am certainly not crazy! Except for my cancers, I’ve had a pretty good life.  Honestly. If bad things in one’s life cause a terrible pain down one’s left leg (whatever the diagnosis might be), then I would say most everyone in the world would have this….and they don’t.  So much for me harboring something bad which might be causing this.  So much for blaming the victim.  (May I mention that before this osteopath started working on me, she sensed that there was a man in the room, a ghost or a demon, actually, and wanted to know if I had lost someone close to me who might be paying a visit?  I had not.)

So, what’s next? I will continue on my quest to get rid of this pain.  I swim every day, and that is the only time I am actually pain-free.  There is something about being horizontal and being in the water.  I refuse to let this get to me, but there is a limit to how much pain one person can take. Currently, I’m just seeing a physical therapist, and I have an amazing personal trainer –  neither one blames me for the pain.  I like that a lot.

Postscript: I recently showed this piece to a friend who also suffers with sciatica.  She had a few things to add to my list: (Some of these were also told to me, but I forgot to mention them!)

Light therapy

Sleeping with a pillow between my legs

Sleep with legs elevated

Gluten free diet

Weight loss

Orthotics

Strengthen core

Strengthen hamstrings

UPDATE:

So, after 10 very long years of dealing with this, I am going to having surgery. I do not have a  choice, and I found a truly extraordinary neurosurgeon to do it, right here in Berkeley. Now, I can't wait!

Just as there seem to be anti-vaxers out there in the world, there appear to be many anti-surgery folks around, and they are completely comfortable telling me that I should absolutely NOT have surgery, or if I do choose to have it, where I should have it and what surgeon should do it.  Honestly, I don't know why I'm so amazed at people's reactions to our personal health-care decisions.  Astonishing, really!

I'm so excited now to have this operation.  I am praying that all goes well and that there will be no complications or hiccups.  The down-time should be minimal, and I will count the days until I will be able to swim.  But, I've been here before, and I've recovered each time from surgeries way more complicated than this one. 

Now all I need is some powerful thoughts and maybe some prayers.  I'll get through this and come our the other side, hopefully pain-free. This is NOT cancer.  I can't wait to have my life back!

Photos are from a beautiful pre-surgery healing ceremony performed by my wonderful friend, Rabbi Tsipi Gabai.  I was surrounded by good friends and lots of love...and great food.

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.