Tuesday, December 31, 2013

Don't Flee the Cancer Community! Embrace It!


Life isn't fair. It never really was. Some people seem to live charmed lives, enjoying idyllic days and happily ever after. Others seem destined to live in chaotic times, with moments of heart-pounding terror, when everything seems to be up in the air, the outcome can go either way, and life becomes a game of chance. It can turn on a dime, when you least expect it, ruining the best laid plans.

Cancer is a terrible disease. Well, actually cancer is a label for several hundred different diseases that we call by this one name, but it's still horrible. And the outcome, depending on the type and stage, can be positive or negative. If you think I'm talking solely in terms of life and death, black and white, you're wrong. I'm talking about how we face cancer. Our reactions, our actions, even our inactions -- they all define us. Cancer may choose among us, but how we choose to manage this disease can make all the difference in the world.

Each of us knows someone who died from cancer of one form or another. Each of us knows many survivors in varying stages. But we are human, and in that humanness, there is a tendency to want to flee the sick. Maybe it's a survival thing. Maybe we just don't want to be reminded of our own mortality. Inevitably, many cancer patients find their social circle growing smaller when their cancer grows larger, as friends and family sometimes turn away, unable to face the expected heartache of saying goodbye to someone presumed to be on the road to death.

Is it the bald head of chemotherapy and the pallor that makes one look like a prisoner from Auschwitz that we can't stand to see? Maybe that's part of it. Or is it that we can't seem to bear the struggle of day-to-day living with cancer, the inability to eat, to walk, to function? What if that impression is wrong? What if, rather than seeing the worst of life, we might see some of the most glorious moments of human spirit and endurance? What if there's another way to look at cancer patients that will help us to live better, more meaningful lives?

When we embrace the cancer community, it's not all pink ribbons and "life is good". We know that as surely as we know some people will not be cured and their lives will end too quickly, some people will manage their disease for a while and we will have those precious months and years to enjoy, and some people will survive the disease and eventually die of other causes. But when you or someone you love lives with cancer, the quality of that life becomes paramount, no matter how much time on this earth is left.

The pain of having cancer is never more apparent than at the holidays. This is the time of year we so love to celebrate, and when someone we love can't find the energy to do normal things, it's a tough reminder that magic doesn't happen for everyone. This is the season of miracles and the sharp jab to our hearts might make us hesitate or turn away. But we should never turn away from a cancer patient or from the cancer community, especially at this time of year. Why? Because we might miss some of the most important lessons of spirit and courage and love.

I say this as I follow several long-distance friends with cancer. Some have found success this year. Remission is a glorious word, one we celebrated with great expectations for continued success. It makes us want to do the happy dance.

Others haven't been as lucky. New tumors arrived with a ferocity that is both stunning and terrifying. Old treatments failed, new treatments failed, and we watched as friends fell into that black hole of uncertainty. Every time another person teeters on the edge of life, we ache, but we ache together. Every time a member of the cancer community dies, we die a little too, but we're there for each other. There is strength in numbers.

Recently, I read a heart-wrenching message from one long-distance friend. Someone she cared about lost the battle and she raged against the unfairness of it all. She was angry. She was passionate. I took heart from her diatribe against cancer. I thought about the young woman who passed away and what she would have taken from this. To know that you matter, that you were someone special in the eyes of such an eloquent and fiery champion, who wouldn't want that kind of friend? No one is ever really gone with so many wonderful people to insist on remembering.

But the most glorious lesson I've learned in recent months comes from a young mother who has faced some enormous obstacles in her cancer journey. She has young children who depend on her. She has a husband, parents, in-laws, siblings, other relatives, friends, and even strangers hanging on her every word. We follow the ups and downs of her cancer treatment with hands on our hearts and prayers on our lips. "Please let this go well for her."

Cancer really is a soap opera of the heart. We never know when an infection might set in and spoil everything or some tiny miracle might be found as a tumor is pushed back. In some ways, living with cancer is the ultimate melodrama. Sometimes that's where the human spirit makes the most progress, whether we want it or not, whether we're ready for it or not.

During Christmas week, I followed the postings of this long-distance friend as she tried to pack as much fun into the holiday as she could, not for herself, but for her kids. "They deserve this," she insisted, and she's right. She reached out to her following, explaining what she wanted to do, asking for help to make it happen. People responded. It was more than just hopes and prayers. It was a community's belief that good things can still happen, even when cancer knocks you on your fanny. That's why it's so important for cancer families to remain connected to the support circle at every stage of cancer treatment and management.

A mother really can fight tooth and nail for her kids, even as this disease continues to smack her to the ground. Why is that important? Because she still has power to change the world. Every time my long-distance friend stands up to get something for her kids, she's stronger than the disease. Her body may not be able to support her at this moment in time. She may feel unable to do the very simple things in life. But there's still a fighting spirit here who demands to be heard, who insists on succeeding. She is motivated by love to give her children what they most need, the very best of her, and in that effort, everyone wins.

Her children will carry these lessons with them through life. The tough times have shaped them in ways that other children will never know. Was it unfair? Absolutely. Was it painful? Without a doubt. But these children have the gift of love like no other children have it. Come what may, they will know that you keep fighting to do right by those you love. They will know that when the chips are down, you find ways to get around the obstacles. They will know that love matters, family matters, and you don't walk away. That's because they have an amazing mother. Cancer didn't make her that way. She was amazing before cancer. But when the disease took hold of her body, she decided how she would live her life with cancer. She recognized that she had the power and she grabbed it, refusing to let go. Cancer would not defeat her, because her spirit was greater than a disease. And she was right. She is so much more than cancer. That is what we celebrate with her. That's what we learn when we follow her journey. And that's what we can apply in our own lives.

When we come together, when we share, we're learning to help each other rise above the hardships, the brutality of cancer, to embrace what really matters and to leave behind those ordinary things that have no real value in the struggle of life over death. It's the triumph of spirit over sorrow, of determination over despair. A cancer community really isn't just about cancer or about living with cancer. It's about surviving and thriving despite the cancer and about not letting cancer have the power to decide how you find the true joy in life. Fate may have brought cancer to your doorstep without your permission, but your destiny is still your own to make. Learn from the cancer community and choose wisely. Live life, love life, and love.






Wishing you all a Happy, Healthy New Year.

Tuesday, December 10, 2013

How Could She Die of Cancer Without Anyone Knowing?

I lost someone precious. She was more than a relative. She was more than a friend. She was close to my heart. We shared laughter and tears as our lives traversed the years, she on that side of the Atlantic, and me on this side. And she died without anyone knowing she had cancer.

You would have loved her if you had the pleasure of meeting her. She had a great sense of humor and a wonderful laugh. She was a compassionate person and had a long career as a nurse. I can still remember when I showed up on her doorstep all those years ago -- a young college graduate, with tennis racquet and duffle bag in hand. She greeted me with open arms at her front door, introducing me to joys of afternoon tea. Tea bag? Never. Coffee bag? Of course.

I went off to the local tennis courts to practice my serve or wandered around her village when she went to work. She wore her uniform to the hospital, looking very smart, right down to her starched cap and nurse shoes. She loved her job.

She had the quintessential cottage garden, a charming spot on a hot summer's day. For her, gardening was a labor of love. Double petunias and begonias, she recently told me, were what should go in flower boxes. I couldn't find double petunias for my garden, but I did think of her every time I looked at my abundant Wave petunias. I managed to plant some white begonias. They, too, thrived this summer, keeping alive our connection.

She was there to help me stay the course when my mother was in the final throws of cancer. She sent me little packages she knew would appeal to the caregiver in me. Those tiny gestures of comfort were like hugs across the ocean: a daffodil pin from the Marie Curie Cancer Center, a star pin from the Light Up a Life hospice organization, cheery offerings to let me know I was not alone. My favorite gift of all was a tiny package wrapped in turquoise paper and a red ribbon. It came with this beautiful sentiment:

"This is a very special gift
That you can never see
The reason it's so special is
It's just for you from me.

Whenever you are lonely
Or even feeling blue
You only have to hold this gift
And know I think of you

You never can unwrap it
Please leave the ribbon tied
Just hold this closely to your heart
It's filled with Love inside"

Even as I recovered my bearings and moved from caregiver back to career, she was there for me every step of the way, encouraging me to keep at it. That defined her as a person. She was a lovely human being.

For the last year and a half or so, she had been sharing her health woes with me, telling me that she was fatigued, she just didn't feel right. Her pain was getting worse in the last six months. It was clear from her notes that she was dismayed. She went back and forth for doctor appointments. Was it her heart? Was it something else? No one seemed to know. Maybe it was just old age. Except her symptoms never seemed to fit that diagnosis either. The pain just got worse and worse, and as it did, so did her misery. She did not deserve it, not after all the years she spent caring for others.

Sadly, it was only after she died that her cancer was diagnosed. All those months -- nay, the last few years, were spent in needless suffering, even as the cancer invaded her body and spread, moving from organ to organ. No wonder she felt so terrible.

Whenever doctors wave away a patient's complaints, whenever we caregivers accept the status quo for our loved ones, we truly miss the boat. Palliative care is about helping loved ones live as well and as comfortably as possible, but doctors need to know what they are treating. She should have never fallen through the National Health Service cracks like that, especially not with her experience as a nurse, and especially not with all her support of cancer and hospice organizations. She deserved much, much better than that. Someone should have listened, should have tested, should have made the effort. This was not just some little old lady with a touch of arthritis. This was a woman with undiagnosed cancer. It's a travesty.

I know that there is one thing she would want me to urge you to do, something I wish I could have done for her. If your loved one has symptoms, but no diagnosis, ask this simple question: Could it be cancer?

Cancer is a sneaky disease. It can hide in organs. It can mimic other diseases. If your loved one doesn't feel right and that sense grows over time, demand to know -- Could it be cancer?

Many times, the symptoms don't show up until it's too late for cure, but that doesn't mean it's too late for comfort. Every person deserves comfort care and pain management. It never occurred to me that cancer was her problem. I thought it was her heart. I expected her to tell me she needed a stent or new medication. Anything but cancer. But I know now I should have asked. Could it be cancer?

For that reason, and because you care, make sure to ask when your loved one doesn't get better. Could it be cancer?

And if it is, don't stop there. Ask what can be done, not just to cure, but to comfort. Tuck this reminder away in your mental caregiver file. Don't stand on the sidelines and hope for the best. Don't wait for a doctor to suddenly become telepathic. If your loved one is not feeling better, act. How I wish I could have done more. Please remember her, remember her story, and do for your loved one what I could not. Press for answers. Could it be cancer?