Sunday, September 14, 2014

When cancer is in all of us

When I went for my annual screening mammogram last week, I had to fill out a new online form with all sorts of questions. I was asked about my family history of cancer, age of menopause, HRT use, etc. When I got to the last question, I hesitated. 

"Have you had cancer?". The options were YES and NO. I thankfully was able to choose NO but thought there should be a better option than that. How about NOT YET?

Now don't get all freaked out on me about this. I'm not a fatalist, I'm not a hypochondriac and I don't harbor a death wish.

I did read a great book recently called The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee who wrote this during his internship at Dana Farber Cancer Institute in Boston. 

This book changed my perspective on cancer. The reason I even know about this book is because my PCP and I share favorite books with each other and this was one she had recently read. I thought it might be over my head but it was written so well that it really did read like a biography.

It's a huge book with tons of science and research but also has personal stories about the author's patients. 

I found as I read it that cancer is not this new epidemic as some of us think. It's been around and recorded since the early days of medicine (early as in, Hippocrates). There have been many treatment philosophies, some with more success than others.

With all the studies being published (eating bran prevents colon cancer - oh wait, no it doesn't) there have only been two cancer causing agents that have been absolutely proven: radiation and smoking. That's it. And even then, not all people who smoke get cancer. The rest of the studies cannot be reproduced in a manner that can confirm other hypotheses. 

So, how much of this can we really control? Not much, I read. Researchers have discovered that cancer cells are normal cells gone haywire. (I am really really oversimplifying for the sake of this short column.) We all have normal cells, right? So that means we all have potential cancer cells. In our bodies. Right now.

Besides radiation and smoking, researchers truly have no idea what causes these normal cells to suddenly flip a DNA switch and cause the out-of-control growth of cells. Cancer cells do what "normal" cells can't do like travel to other organs and fend off antibodies. And researchers have no idea why it happens or how to stop it. They can play with chemo agents, radiation (to a point), and conduct radical surgery to try to control it with mixed results. But they can't ever guarantee that it is completely erradicated. 

I read this book because I've always felt that knowing the enemy helps my chances of survival. I'm also a bit of a science geek and thought I could learn something about an amazing biological phenomenon. I was right on the latter but not the former.

This is surprisingly not depressing to me. Instead of worrying about "getting cancer" I have accepted that my body will always harbor the potential. It was a "We have met the enemy and he is us" moment for me when I finished this book.

The stats say that more people are living with cancer than ever before. Does that mean that cancer is on the rise? No, I think it means that science has found remedial solutions so that we don't die from cancer as quickly as our ancestors. 

Mukherjee concludes in his book that we will likely never be able to find an absolute cure for cancer or even come to a total understanding of why cancer cells occur.

Cancer is still a scary disease to have and, to me, an even scarier one to watch a loved one bear. But there is relief in acceptance. Not of the inevitability of cancer so much as the reality of biology.

Saturday, September 6, 2014

The importance of humane

Sitting on the Board for the Lowell Humane Society is an honor I've held for 3 1/2 years. I feel that I do very little except attend meetings and help organize events. The real heroes are the staff in the shelter, the tireless volunteers, our donors, and the president of our Board.

There are a lot of folks who assume that LHS receives local and/or state funds to operate. Maybe it's because we provide a service to the community or maybe it's because having "Lowell" in our name makes us sound like a city organization.

In reality, all of our money comes from two places: individual donors and private grants. Given our 500k operating budget, it always humbles me to know that our little non-profit exists because of the kindness of others. 

The work done at LHS is not easy. Lots of happy-ending stories appear on social media with smiling pets and owners. The actual stories behind the stories are often filled with a lot of heartache for surrendering pet owners, compassion-fatigued staff, haunting visuals of abused animals, and mounting vet bills.

This is not to say that the staff and volunteers at any shelter or rescue group are crying into their pillows every night. The work is hard but its rewards are great. 

The people I've met through my association with LHS and also with a previous dog rescue group I helped lead for five years, have me shaking my head in amazement many times. These are people who give up fiscal and sometimes physical comforts so that animals can not just survive but flourish.

Staff members give up their own free time to come into work to help in a crunch. They take calls and attend meetings while on vacation and never complain. Donors go without so that animals are cared for.

Is the pay commensurate with the effort? I'd like to say it is but we know the reality of non-profits and any career that helps further the wellbeing of living beings in need. The fact that jobs that help the discarded and forgotten pays so much less than a high-tech worker is an inequity that I struggle with constantly. But that's a topic for another day.

Today I want to raise up the kindness of the human heart that recognizes animals make our lives better. Animals are worth our time, our money, and our energy.

And the people who make our lives better for it deserve as much support and applause as we can give them.

To donate to the Lowell Humane Society, visit our page at: http://www.lowellhumanesociety.org/index.php/donate/

Saturday, August 30, 2014

That beautiful naiveté

It was a fairy tale ending. The man who his employees and customers picketed for and threw their loyalties to not only survived but ruled the outcome. 

It was six weeks of constant news coverage, social media speculation, higher food bills and lack of income. Everyone was on edge and no one knew how it would end.

Having worked at Market Basket (Demoulas Supermarkets for my generation) for 5 years to put myself through college, I had some first-hand knowledge of the family. My grandfather who was a Nabisco salesman in the 30s and 40s loved Mike Demoulas because he always said hello to him when he was in the store.

My experience with Mike and his son Artie T. was not good and I found George's son Angelo (Artie S.'s brother) to be the only family member who could relate to the workers. But Angelo died young and Artie T. rose to the top. Artie T. seems to have figured it out along the way and I'm glad to hear that.

When I worked there part-time, I became friendly with the full-timers. All really good people who worked hard. The salary wasn't great back then but they got an annual bonus that kept them at their jobs.

Some of these people were college graduates who were stocking shelves. Some moved up to individual store management or "higher" positions like receiver. Looking back, it was the most fun job I ever had but even now it is not one I could do full-time. I needed a bigger challenge.

I found myself thinking about those workers who are probably still working at Market Basket. I know for sure that some are. These are workers who have never worked anywhere else in their careers. So they've never been "screwed over" by corporate America like those of us who left there to test the waters. 

Would these workers have walked if they had previously experienced first-hand how The Man giveth and taketh away in publicly-traded companies? Could they have stuck to their mission for as long as they did if they had seen before how little their voices mattered in a corporation?

The media talks about the workers' resolve. I think the bigger story is their naiveté. Now don't think I mean that as an insult. I don't. But I believe it is exactly that lack of cynicism and bitter disappointment of their staff that made the Market Basket story so intriguing. 

Because I have lived in an atmosphere of layoffs since I left Demoulas Supermarkets in 1981 I can see how my staying there would have insulated me from that feeling of disempowerment. It would have made me think that anything was possible if I spoke the truth and did what was right. And more importantly I would have felt that I was not just allowed to but had a basic right to a voice in a company.

How beautiful is this naiveté and how rare. 

Will it change anything at the corporations who routinely layoff good workers when the stock market experiences a blip? Will it make corporate leaders nervous about this happening to them?

I guess I'm back to my old cynicism when I say that I think not. Remember that the American workforce outside Market Basket has been knocked down from years of unjust firings, bloated executive salaries and 24x7 job expectations. 

They/we wouldn't be able to stop the feelings of inevitability from creeping in and sabotaging our good efforts. We've hardened and learned how to survive in a powerless worker economy. It has changed our DNA and there's no going back.

There will be a lot written for years to come about what the Market Basket workers pulled off and what effect - if any - it has had on employers. But to me it will always be a story of beautiful naiveté. 

Sunday, February 2, 2014

Finding mom

Last night, I started to turn my focus around from grief to gratitude. It's important to move through the weightiness of the grieving process (which really never completely ends) and start to lift your head up again in search of signs of light.

My sister sent me an email yesterday about how she noticed that no one had signed up to bring flowers for the altar for her church service today so she decided she'd just make it happen. Once she got to the store to buy flowers she realized it was mom's birthday in two days. 

My first thought was that this special moment was a gift from mom. "I'm still here. You'll find me in the things you do for others as I always did." 

It got me thinking about how I often focus so much on the baggage from my father that I miss the places where my mom shines in me. She has been lost these past few years. Hidden under a lot of pain and sadness. And resentment, too. Resentment for the mess she left me when she died. 

As I've been moving through the grief process, I've been letting a lot of anger go. I'm finding now that one doesn't need to place blame when things don't go right. Sometimes bad things persist no matter how hard you throw love at them. Good intentions - mom's and mine - couldn't permeate a solid wall.

As of last night I made new good intentions. Instead of pointing to pieces of me that I don't like I decided to start finding mom in what was good about me. 

Fast forward to today.

Every Sunday after our church service, someone in the congregation hosts social hour. It includes coffee, tea, juice and snacks. Today social hour was hosted by the church's high school group with help from the adult facilitators. 

If you've read previous posts you'll remember that I help to facilitate the group and have been a one-on-one mentor in our church's Coming of Age program for teens. Having been an awkward, marginalized teen myself, I find that I can relate to and help teens in a way that I can't with younger children. Volunteering with the church youth is, hands down, the greatest feeling of fulfillment I have in my life.

At social hour the mom of one of the high schoolers talked to me about the Coming of Age program for her son and then shared that he planned to request me as his mentor next year. I was so touched by this that I choked up and could not immediately respond. 

It wasn't just that I felt that this was validation for my volunteer work, it was that in that moment I found mom. 

"I'm still here. You'll find me in the things you do for others as I always did." 

Friday, January 10, 2014

Pain is pain

My husband received a letter from his sister yesterday (stuffed in his "happy" birthday card) that brought up some real anxiety for me. Having watched two parents die in 2.5 years time, I guess I'm a little sensitive. So when the letter dismissed the pain, grief, and heartache I went through simply because I didn't live under the same roof as them when I cared for them (as she does since she never lived on her own and is now unmarried and pushing 60), I was understandably upset. 

To prove that what I went through truly was horrible, I took almost an hour tonight looking at emails from my father in the time between my mother's death and his falling and breaking his hip (thereby landing him in a situation far from a personal computer).

These emails were painful for me when I received them and they are still painful now. They were often filled with anger toward me. Dad said hateful things like I was stealing his money (because I handled his finances due to his inability to remember simple things like not losing a checkbook and paying bills), turning his family against him, "walking off" with his license (which his doctor revoked, not me), filling my dead mother's head with lies about him so she would leave him, blaming him for my mother's death, etc. 

Had my dad not had a difficult personality and made hurtful comments all his life, I could have dismissed this. 

Some of it might have been due to his dementia. But I still feel that because I was the one he needed the most, he resented me for it and took every opportunity to lash out at me. No matter how much I did for him. He would say things that hit below the belt like calling me a frustrated middle-aged woman who couldn't have kids who was using this time when he needed me to control him like I would a child. 

It was ugly. The emails and phone calls came non-stop. Most nights he would call 10 times and leave vicious voicemails sprinkled with a dozen or more emails  in between saying the same thing and copying my siblings. 

I ended up with major health issues (on top of the already raging CFS). At one point my doctor told me to "move to Vermont and change my identity." It was, she felt, the only way I could escape the nightmarish relationship that I still somehow had to deal with because of my father's situation.

None of this was shared with my sister-in-law. She never asked, either. Assumptions were always made that because I would show up at family events with a smile on my face, that I must be fine. Short-sighted and naive at best.

So when that letter arrived yesterday, I was angry. How dare someone who has not walked in my shoes (or lost even one parent) make such claims? Was it because I really didn't go through that hell? Or that I was exagerating? Was I being a "martyr"?

This prompted me to reread those emails. As I read them, I felt the same heartburn and panic I did when I last read them - over a year ago. I could feel the physical pain and the incredible hurt that only a parent can inflict. How did I survive that day after day for almost 2 years? And how did I get through cleaning out and selling the family home last summer when my dad was obviously not coming home to it? All the time dealing with this nightmare with my father and not even having space to grieve my mother?

I can only describe how I feel now as "shell-shocked." As hard as it is and was to go through this, however, I have learned important lessons: Never tell someone you know how they feel. And never ever use someone else's pain as a step stool to your own martyrdom. 

I was told that at difficult times in life you find out who your real friends are. Well, I did just that. And I also found out who I can call "family."

Saturday, December 14, 2013

The Christmas List



By this time of the year, I usually have a ton of Christmas shopping done. Oh sure, I've picked up a couple of little things here and there but nothing close to the comfortable level I like to be at by now.

I have a place in my finished basement where I store all the gifts along with the materials I use to wrap them. When I was in the basement today going through paperwork for my dad's estate, I noticed just how empty the Christmas corner looked. 

My dad, who lost his reason for living when my mom died three years ago, was the main focus of most of my energy for the past three years until he died last month.

Since that day, I’ve been doing everything that I need to do for his estate, just like I did everything I needed for his care while he was alive. Handling finances, meeting with professionals, and doing the Australian crawl through the swimming pool of responsibility. 

I no longer visit the nursing home to spend time with him but everything else feels almost the same. Anxiety awakens me at night. Worried that I’ve forgotten something that needs to be done for him and then remembering he is gone. 

It’s easy to go from zero to sixty since we spend our lives reacting and pre-reacting for the next dropped shoe. But going from sixty to zero is harder. How do you turn off that switch that’s been stuck in the ON position for so long? 

I threw myself into work and volunteer responsibilities. Taking two business trips in three weeks and more or less allowing for no space in my brain for thoughts that would lead me to process the loss of my last parent. 

There is fear, yes. Fear that I will start to grieve and never stop. Fear that I’ll uncover some dark emotion or, worse, mistake. That I somehow didn’t do the care-taking “right.” I perhaps forgot to fully understand all the medical choices available. Or maybe I didn’t communicate his needs as well as I could have especially since his dementia kept him from doing that himself at the end. 

After getting the paperwork I needed for the estate attorney, I walk up the basement stairs and into my kitchen. I add the paperwork to the pile that sits at the end of my kitchen table awaiting some sort of action.

As I head back towards my home office, I notice my purse which sits on the counter. I stop, clench my fists at my sides, take a deep breath, and open the compartment in the front. I fumble around through the individually-wrapped life savers and the mai tai drink umbrellas that I save for my nephew until my fingers find the Christmas shopping list I started in September.

On it are a list of names with gift ideas next to each person. The first line reads “Dad - pajamas.”

Since his world was so small in September that he was no longer able to understand the history books he loved, and the house he adored was no longer there to putter around, I had no other ideas.

I struggle with what to do about that line on the list. I don’t know if crossing his name off is a sign of moving on or a sign of disrespect to his memory. I pick up a pen from the counter and take another deep breath. 

I smile at the word “Dad”. I remember how much my parents loved Christmas. And then I put pen to paper. 

I cross out the gift idea “pajamas” but can’t bring myself to cross out his name. I look at that line on the list again and smile.

In place of “pajamas” I write “Mom.” Then put a check mark next to his name.

And so the healing begins.

Thursday, December 12, 2013

Post-mortem beginnings

Since two days before Thanksgiving, my emotions have mostly been full of anger, frustration, anxiety and sadness. When Dad died in October after a 2 1/2 year struggle to live without the one person who could keep him in one piece, it was the end of a very stressful journey for me as well.

The holidays are something I need to "get through" this year. I'm decorating the house and putting up a tree. But not sending cards or baking. It's not in me this year and, for once in my life, I'm taking a break from expectations that I put on myself.

Dad's final journey started over three years ago when my mother was diagnosed with pancreatic cancer. It was a miracle that she lived 9 months with it before it finally took her. She gave it an amazing fight till the very end which was not easy for me to watch. I don't think she was ever ready to die and seemed to feel that by admitting "defeat" she would die quicker. 

One of the reasons she wanted to live was my father. She was supposed to take care of him when he was dying, not the other way around. And she knew how much he relied on her for his emotional wellbeing.

Dad had his demons. None of which were lost on the family. He worked hard and provided a comfortable home and life for his family. But he never could outrun his anxiety or the ways in which he tried to silence it. 

My relationship with my father was complicated as were all of his relationships. He pissed off more people than I can count. Some saw through his difficult personality and found the heart of gold that he had. To those friends and family members who hung in there with him, I have only the utmost respect and gratefulness for them.

There is much to write about my dad who was without a doubt the most influential person in my life. Even more than my mother whom I adored. 

And maybe that's why this Christmas I don't want to feel anything at all. It seems almost like the last 3 years didn't happen for me. Or that it happened to someone else. 

These feelings of unreality are my brain's way of keeping me safe. Of only allowing me to feel what I can without losing control of my emotions which has always been my biggest fear in life. I understand that and respect this natural process.

My father's PCP called me today. He wants to talk about the last few months of dad's life. Dad's care had been transitioned over to the nursing home doctor who was great. But dad was a patient of his PCP for 25 years and there were many times that I called him for help when dad was clearly unable to function any more. His grief was so great that he became lost in it. Incapable of sleeping, eating, conversing. And being so afraid of how deep the well was that he couldn't bring himself to accept help. And then the dementia took over.

I don't want to talk to dad's doctor today but know that I must. I'm surprised at how many details - details that I was so immersed in for years - I have forgotten. Another defense mechanism thanks to my brain, for sure. 

This is why I don't write in my blog much lately. It's hard for me to put my hands around what I'm feeling and I don't really want to remember the hell of the last three years. Especially since I took the majority of the anger from my dad since my mom died. I was to blame for everything that went wrong in his life - and a lot did. 

I don't normally write rambling, unstructured blog posts but this is where my head is right now. I don't have the neat little endings with lessons learned from it all like I always do. It's untidy and messy and might stay that way for a long time.

I will do my best to let the feelings and memories come and try not to fear them or hush them. Maybe then I can tidy up this cluttered brain.