My Final Goodbye to Mom: “Heavenly Hair. A Voice. A Difference.”

 

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My Mom, Leslie Lehrman, passed away on December 5th, 2012, after a six year valiant battle with lung cancer.

As I mention in my eulogy below, Mom and I became partners in lung cancer crime three years ago – making a pact to publicly chronicle her journey with lung cancer through a social media campaign to increase awareness and create change for this disease. To put a face behind lung cancer – the REAL face behind lung cancer.

We vowed to show and tell the good, the bad, the ugly and the worse than ugly throughout her journey….and to ask the tough questions. What about lung cancer could possibly be sugar-coated? Nothing…and we made sure it wasn’t.

 

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We live-streamed Mom’s “Celebration of Life” service (video above) so that family, friends and countless members of the online lung cancer community who couldn’t make the service in person could take part in this part of Mom’s journey, too, and thank them…again. Most would assume this is the end of Mom’s story.  Quite the opposite.  Her voice will continue to be heard, just in a different way.

 

Mom's "Celebration of Life" service

Mom’s “Celebration of Life” service

 

Mom’s “Celebration of Life” service was held December 11, 2012 at Palo Cristi Presbyterian Church in Paradise Valley, AZ. What made her service that much more special is the fact that she planned it. She picked out her favorite songs. She picked out the scriptures and hymns that held special meaning to her.

Planning your own memorial service isn’t the easiest thing, obviously, but Mom and I considered it a true blessing and documented our journey in the hopes it would help others talk more openly about death and the importance of making final arrangements in order to carry out the dying’s wishes. We were able to do just that for Mom.

You can view incredible photos of Mom that accompany her favorite songs here:  Somewhere Over the Rainbow by Israel “IZ” Kamakawiwo`ole’s, Taken Care Of  by Winfield’s Locket, Empty Garden by Elton John and Amazing Grace by Nana Mouskouri.

Saying goodbye to my Mom is the hardest thing I’ve ever had to do. However, I am so comforted to know she is no longer in pain and that her legacy will live on thank to her courage, bravery and willingness to so openly share her story to create true change for lung cancer.

My Eulogy to Mom:

Heavenly Hair.

A Voice.

A Difference.

Oh, Mom. Where do I even start?

Easy. OK, PLEASE tell me your hair is finally perfect now. Please tell me the cut is just right. That the right side isn’t doing that “flippy” thingy you hate so much. Wait, you can’t “hate” in heaven, can you? That it stays in place. That it wasn’t too much work. That you really like the color. Oh, are you still thinking of going back to blond? I have got. to. know.

Seriously, my Mom was obsessed with her hair. It was really the only thing she truly complained about. Cancer schmancer. Mom’s hair ruled the day.

It was pretty much guaranteed, she’d say, “Oh, I just can’t do anything with this hair. It’s just disgusting,” at least once a day.

Well, one day, when Mom was back in Omaha, we got together with one of her old Fairbury high school classmates, Christine. She hadn’t seen Christine in years. We went to lunch. Somehow Mom’s hair issue came up. You know what? Christine told me Mom used to complain about her hair clear back in grade school. Are you kidding me??

Well, thanks to Mom, I, too, have a slight hair obsession, however I tend to focus more on the gray hair I started to get in my 20s. I guess she and grandma felt compelled to pass that awesomeness down, as well as the biggest sweet tooth on the planet.

Mom loved all things candy and dessert. If there was a plate of goodies, without fail, Mom would say, “Oh, I really shouldn’t be doing this, but I’m going to anyway.” I would roll my eyes at her and say, “Just eat them Mom.” Now I do and SAY the exact same thing. I am so my Mom…a wonderful thing.

Recently I reminded Mom of the “baking chocolate” incident. Mom used to bake a lot when we were little. I distinctly remember being in the kitchen with her, where I spotted a box of baking chocolate in the cupboard. I wanted it. Badly. I asked her if I could have some and Mom said, “No, you won’t like it. It doesn’t taste like regular chocolate. It’s bitter.” Well, I didn’t know what all that meant and I didn’t care, so I continued to beg and beg and beg. She repeatedly said, “No.”

So, when Mom finally left the kitchen, I grabbed that box, broke off a chunk and shoved it in my mouth. She was right. It was awful and I spit it out. Bitter, not sweet – for sure. Lesson re-learned here: Listen to Mom. She knows her stuff. And, please know Mom…I will still be listening.

Another guarantee in the bright red Stauss kitchen: Mom talking on the phone FOREVER –  pacing back and forth from the kitchen to the “ugly room” (as I called it), stretching the white cord to its capacity. Back and forth. Back and forth. Back and forth. She loved chatting with friends and family. I should have realized Mom had a voice and knew how to use it clear back then!

You know, while it was fun to joke about Mom’s “hair obsession,” when cancer joined the picture and it came time for chemo, I was very worried. I had no idea how she would react to losing her hair.

Given all previous hair experience, I assumed it would be a huge ordeal. Not. at. all. Once it started to fall out, Mom simply called her hairdresser and said, “Let’s shave it off.” And that was that.

There is no more perfect time to share with you my absolute favorite quote, written by my friend, and cancer survivor, Bob LeDrew.

 

“I have a new favorite cookie. It’s the Leslie. It’s the toughest one I’ve ever seen.” – Bob LeDrew

 

Seriously, isn’t that the truth? My Mom simply never. gave. up. Ever. I mean ever.

Really, when I look back at all the curve-balls life threw her way – and there were some crazy ones – strength and perseverance always prevailed. She made certain of it. My Mom was more than tough. Tough Googleplex infinity.

This was so evident to all of us over the past six years as we watched her stand up to lung cancer time and time again. She fought tooth and nail…and then some…literally every single hour of every single day of every one of those years. And, she fought not only for herself, but on behalf of so many others.

I would be remiss if I didn’t talk about my Mom using her voice to make a difference – chatting with friends and strangers alike to create change. And she did…and she will continue to.

Mom unwillingly entered a “hush-hush” world where virtually no one talks about lung cancer, especially those who have the disease, for fear they will be told they brought it upon themselves.

Here’s the deal. The real deal:

  • My Mom never smoked.
  • You don’t have to smoke to get lung cancer. ANYONE can get lung cancer. My Mom is ANYONE.
  • Most people don’t know that nearly 80% of people diagnosed with lung cancer today have either never smoked or quit decades ago.
  • OK, now add these factors. Lung cancer is the #1 cancer killer of both men and women and the LEAST funded cancer by a LONG shot.
  • Just one more stat, I promise. The 5-year survival rate for lung cancer is just 15%. Just 15%. And, this has remained virtually unchanged for more than 40 years. Literally ignored for more than 40 years.

So, here’s my beautiful Mom. She gets lung cancer. She doesn’t know why. It’s evident few in the medical and cancer communities seem to care to find out. Politics & money. ‘Nuff said. Mom has very few treatment options. The only reason her lung cancer was detected was due to a completely unrelated scan. There’s no early detection screening standard for lung cancer. She’s suffering not just physically and emotionally from this disease, but also from the societal stigma – a deeply entrenched stigma, but also deeply outdated.

So….now what?

As a former reporter and public relations professional, I felt compelled to tell the true story about this disease. Mom agreed. She was living it.

So, Mom and I became partners in lung cancer crime three years ago – making a pact to publicly chronicle her journey with lung cancer through a social media campaign to increase awareness and create change for this disease. To put a face behind lung cancer – the REAL face behind lung cancer.

We vowed to show and tell the good, the bad, the ugly and the worse than ugly throughout her journey….and to ask the tough questions. Has it been easy? No. Absolutely not.

But, what about change is easy? Nothing.

What about lung cancer could possibly be sugar-coated? Nothing…and we made sure it wasn’t.

As all of us can completely understand –  through the campaign, the online community fell in love with Mom. And Mom and I fell in love with the thousands of lung cancer survivors, caregivers, family members, friends and others who came together to help one another – who came to connect with others just like themselves – who came together with one collective voice to ask, “Where IS the Funding for Lung Cancer?”

The true beauty of all of this – a community came together for the same cause – for the same mission. A group of people who, in the beginning, some wouldn’t have dreamed of becoming lung cancer advocates. It was too risky. Why set yourself up to be blamed for your own disease?

So many people have told me and Mom that her bravery and courage in so openly sharing her story has helped change that. That her journey has helped empower them to want to share their stories, to want to chip away at that stigma, to not stand for the status quo, to demand change and take action to get it. That her journey has sparked others in general to talk to their own families about death, making final arrangements and understanding the importance of addressing these uncomfortable issues. I had the honor….the privilege of telling Mom’s story. What a blessing for her willingness to share.

We created a movement….all of us….together. We created a family. Because of that, we have put a dent in that stigma. We have increased awareness that lung cancer is an equal opp disease. We have increased funding for lung cancer research. We have also made it very clear…that lung cancer can no longer be ignored.

Today is a very sad reminder of that.

But, we soldier on. We have to. And, Mom’s voice will continue to heard, her story continue to be told…just in a different way.

Incredibly, the day before Thanksgiving, my Mom’s legacy came to life, literally as she was losing hers.

These little guys, who Mom called “her boys, became a reality. This is NoMo and this is Phoenix and they are SMAC! monkeys. SMAC! stands for “Sock Monkeys Against Cancer,” and Mom is the inspiration behind their creation.

The funding necessary to bring these little guys to life, was raised through a crowdfunding campaign. Which means that everyday people, again…a community, came together to make this happen.

This also means that those with cancer can have a little monkey buddy by their side, to provide tangible love and comfort throughout their journeys.

For a year and ½, I worked as quickly as I could to get the SMAC! monkeys made and launch the crowdfunding campaign so that Mom could be part of it. She would say repeatedly,” Oh Jen, I so hope this all works out.” I always told her, “Don’t worry Mom, it will. I will make sure it does.”

I finally made myself pick a launch date for the month-long crowdfunding campaign, November 1st. Obviously, Mom’s health was in decline throughout this process, but it took a big turn just as November 1st approached.

I grappled with whether or not to launch the campaign…but not for long. My heart said, “Yes, go forward.” And, I am so glad I did.

Several of us were fortunate to spend several weeks of November with Mom. It was the most precious time. Even though she had trouble communicating, we could usually figure out what she was trying to say. She was able to talk about how she was feeling and we were able to tell her it was OK to let go. We laughed. We cried. It was an amazingly meaningful time…a true blessing. A gift.

Through it all, every so often, Mom would say “numbers.” She wanted to know how the campaign was going – how many dollars had been pledged. I would give her news of the incredible progress.

One day, we were so very close to hitting the funding goal, I told her, “Mom it’s going to happen. You are going to help so many people with cancer. I am so proud of you.” She smiled and we gave each other a “high-five.”

When Mom was sleeping, I would go to my computer in her kitchen to work on the campaign. I would get an email notification every time someone made a pledge – and hear a “ding” from my phone. I was so overwhelmed with emotion to see the numbers climb on my computer and literally look to my right and see my Mom on the couch preparing for her transition. I can’t even explain the range of emotions. I just can’t.

On Thanksgiving Day, I was able to say goodbye to Mom one last time. She really couldn’t talk and was less coherent, but through her eyes, nods, hands and smiles, I could tell she understood. This time, it was definitely goodbye. I felt it. She felt it. There was no mistaking.

I was also sure to tell her the campaign hit its funding goal the night before. I had to repeat it a few times, but once she understood, she smiled.

I consider all that time with my Mom a true blessing. Man, what a blessing. Not everyone is afforded such an opportunity.

As for Mom’s SMAC! legacy, the only word I can come up with to explain it all is “serendipity.”

Actually, no, there is another word I can add to that – no two words –  “voice” and “community.”

Mom’s legacy came to life.

Just how awesome is that. There truly aren’t  words.

From the bottom of my heart, THANK YOU. Through SMAC!, Mom’s legacy will allow her to continue what she so loved to do – GIVE – by helping those with all types of cancer.

At the same time, SMAC! gives all of US an incredible tool to immensely elevate Mom’s voice – to continue to bring true change this disease.

Keep on talking Mom…and pacing back and forth the floors of heaven. We hear you.

And we love you more than you could possibly know.

“High five,” tough cookie.

 

 

Mom and Me

Mom and Me


  • Scottgreenwood36

    I have been following you and your mom’s story for a while. I have LC for 3 years now. Tomorrow I meet with my oncologist and radiation drs. for a consult. Cat scan a week ago. My wife has been in hospitals since thanksgiving. Doubtful she will be home for Xmas.I figure I might have a couple years if I am lucky. Looking forward to getting some smack monkeys for others and I.
    I was a smoker, I am 54 and feel like it is over. Aids gets more funding while so many more people die from LC. Cancer really does suck. Thanks for all you have shared. God Bless You and your Mom.

  • Guest

    Dear Jennifer,
    I just stumbled on to your blog. What an astonishingly beautiful documentation of your mom’s journey through lung cancer. I am certain she must be so proud of you. My father died two months ago (Oct 16, 2012) of lung cancer after valiantly giving it all he had for three years. He quit smoking entirely in his early 30s and was diagnosed with lung cancer when he was 70. Hold on to your delightful sense of humor, and thank you for your courage to write about something most people would shy away from. I wish you so much peace and comfort. 

  • Kelly H

    It has taken me almost 8 years to type in information about women, who did not smoke, diagnosed with lung cancer. My Mom died August 12th, 2005, from lung cancer at the young age of 49. She would have loved the current trend of healthy eating, as she was a health nut before it was cool. So shocked were we to find out in January of 2005 that she had lung cancer. She never smoked, she exercised, she steered away from processed food, and overall led a healthy lifestyle. She had a rapid growing cancer that took her from us in a short but grueling eight months. I appreciate seeing what you and your mother have shared, thank you and I hope you find peace. I hope one day all forms of cancer are fought for and eventually cured. I hope your mothers hair looks great, and if she needs help my mom (a hairdresser) is their in heaven to help.

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