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Posts Tagged ‘Cancer’

This weekend I watched the television adaptation of Larry Kramer’s The Normal Heart. The movie, based on Kramer’s play by the same name, chronicles the beginning of the HIV/AIDS crisis. This may seem like an entry on Facebook for Throw Back Thursday, but its message is current, and beautifully acted.

One may wonder why are we engaged and lauding the courage it takes to make a film about HIV/AIDS in the 80’s when we’re in 2014. I worked as a HIV/AIDS service provider in the 90’s. Things have changed enormously since then, that I’m grateful for, but there’s still more work to do, just as there is with cancer, multiple sclerosis, Parkinson’s disease, and mental illness. Using that as a jumping off point, why is The Normal Heart so important?

I was listening to an interview on Good Morning America with Julia Roberts. Roberts plays a physician who, at the beginning of the epidemic, is really the only doctor seeing these men with this mysterious illness and trying to get funding to unravel its mysteries.

One of the most poignant moments in the interview Roberts shared how the movie is relevant in today’s age. Roberts clearly talked about the need for us all to be willing to fight for a cause. We need to be able to go to the mat for something important, vital to our existence when it comes to our physical, emotional, or spiritual lives. The Normal Heart shows us the lengths necessary to bring about change. It provides us with the catalyst to ask ourselves what do we think needs to happen to make lives better for those facing challenges. What’s our part in the making those changes, and what are our next steps?

What draws at your heartstrings? One of the easiest ways is by looking at your Facebook account and seeing what you’ve “liked”. What organizations, stories, and posts bring about a visceral reaction? I have a friend who’s an HIV/AIDS nurse practitioner. She has devoted her entire life to finding a cure, lessening the impact of HIV on people’s lives across the planet. I follow the Old Friends Senior Dog Sanctuary.  They care for older dogs who have been abandoned or whose owners can’t care for them (mainly older adults). They post pictures of the dogs throughout their day capturing the hearts of folks like me (I have a 13-1/2 year old lab mix with many medical problems). There’s something we’re all drawn to and gets us going when we talk about it, most likely those causes we give money to or volunteer for, and for some the professions they’ve chosen.

The Normal Heart may reflect on days gone by, but its message it relevant today. If nothing else just the length of time it took to have the film made talks about how perseverance and passion fuels change. What do you use when facing a challenge to channel your energy for change?

Diagnosed with a chronic or life-threatening illness? Looking for education, support, and inspiration? Visit www.survivingstrong.com

Interested in the impact of Art on Healing? Visit www.timetolivecreatively.com

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I’ve been involved in the lives of those with chronic and other life-altering illness for over twenty years.  During that time I’ve become a pretty good observer of people as they go through the illness process. 

Yesterday I was watching one of my co-workers who within the last year was diagnosed with cancer.  The cancer is in his spine and the doctor’s have told him they can treat it like a chronic illness, but they won’t be able to put the cancer into remission.  When I was watching him at work I asked him if he was okay because his stride was different, and he had a slight edge in his face.   I asked him if he was in pain and the answer was a definite, YES!!

We began discussing pain medications and patches and they don’t seem to be taking enough of the pain away.  He’s in a job where he’s on his feet 10+ hours a day and is walking back and forth across a 60,000 sq ft. store.  Finally he turns to me and says, “Maybe I should just go out on permanent disability”. 

I stopped and asked what was holding him back and there wasn’t an answer.  I knew the answer and I bet you know the answer as well (as did he).  If he goes out on disability the rules of the game change.  The relationship he has with his body and the cancer change because the committee in his head is saying that the cancer is winning.

I’ve discussed many times that not everyone will live till their 120, nor will everyone get well, although they may get better.  Illness progression does mean that adaptability has to be your middle name.  However, if the rules of the game change learn the rules and play the game to the best of your ability.

My immediate thought was for him to go out on disability, ease the tension in his body, mind, and spirit and hopefully that would allow the pain medication to work better.  If that weren’t the case he could ask the doctors to increase the pain medication levels; the side effects may increase, but the pain would be eased.  The hope is that somehow he can increase his quality of life.  I know he loves his work, but it may be time to love himself more.  It may be time to focus on relationships and hobbies, and enjoy whatever days he has without pain.

The game will change, we just have to learn to live in the gray zone and figure out a way to learn the new game quickly and become a master at the new game.

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We’re a verbal culture and we like to talk.  People make their entire living simply by talking and yet when it comes to some crucial conversations we stay so far away that we think we’ll live forever. 

Patterson, et.al. wrote a book called “Crucial Conversations” for the business world.  It spoke to the corporate world about how to have important and often awkward or uncomfortable conversations with employees about performance and other issues.  It’s amazing that the medical community hasn’t come up with its own version of this book because most doctors, even oncologists (who deal with more death than most other specialties other than possibly emergency/trauma medicine) won’t or don’t talk to patients about end-of-life care.

There was an article on Comcast this week citing new recommendations for the cancer community from the American Society of Clinical Oncology (ASCO).  The ASCO recommendations are for doctors to have those crucial conversations before the person is rolled into an emergency room or they are on life support.  Too often we’re finding that patients aren’t even aware that comfort care/hospice is available and suffer needlessly as does their caregivers. 

I think the article puts it beautifully about the capacity of you, the patient, they say, “Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it.”  I understand that there are too apologies that doctors have to make that is not comfortable.  The first is at the time of diagnosis when they say, “I’m sorry to tell you, but…” and the other is “I’m sorry to say that the treatments aren’t working and there are no clinical trials available, so it’s time to talk about end-of-life care.” 

The statistics given by ASCO says that “40 percent of advanced cancer patients have what it calls a ‘realistic conversation’ with their doctors about what to expect and their choices of care”.  The frightening part of that statistic is what follows next, “The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life.” 

The ramifications of that last sentence are that at the end-of-life instead of being comfortable, they are dealing with side effects from chemotherapy and not able to live life unencumbered from machines and hospitals.  No one wants to die but it is inevitable.  Why wouldn’t you want to be comfortable, in the surroundings you desire, and with people who love you the most. 

This is the hardest part, you, the patient, may have to be the one to bring up end-of-life issues with your doctor (no matter your diagnosis).  You may have to be the one who has the strength and the courage to approach your doctor and have this “crucial conversation”.  You may have to be the one who assures the doctor that it’s appropriate and okay to discuss end-of-life care.  You get to be the physician’s coach on end-of-life issues pertaining to you…after all who better to do this job.

I know it’s scary, but if you need some support or have questions about end-of-life care or how to speak with you medical provider you can e-mail me at greg@survivingstrong.com.  Don’t leave your end-of-life care in the hands of another person.  Empower yourself to make these decisions!

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Whatever your religious or spiritual beliefs and inclinations I wish you a Happy Holiday Season.

It’s the day after Christmas and all through the house….remember that famous line?  I bet you have a 1001 ways to finish that poem.  The response would depend on whether or not you celebrate the holiday or simply think of it as another day.  I know that this morning there are many of you who may are venturing out to the stores to get those after holiday bargains.

The morning after is an interesting concept because it entails dealing with some degree of a let down.  You plan for months (at least some of you) and then in 10 minutes everyone opens their gifts and it’s done.   On the day of the holiday or spiritual celebration of your choice you may cook for hours and then you sit down at the table and in 20 minutes you’re finished. 

We have a tendency to build up events in our lives and take enormous amounts of energy to plan these events and celebrations and they’re over in a flash.  The question is, “did you enjoy the event/celebration/holiday?”  What will you cherish most about the day?  Following the diagnosis of a chronic or other life-altering illness making memories are important because they are like making deposits to your emotional and spiritual bank account.

There may come times during the course of your illness that you may need to rely on the memories you created with family and friends to get you through the next leg of your journey to wellness. I’ll give you a good example that I saw on the news the other day.

Austin Williams, a typical 14-year-old had dreams of joining the army someday.  In April he was diagnosed with a myosarcoma, a very aggressive and smart tumor.  He was admitted to the hospital for a 54 week course of treatment (that’s a long time to spend in the hospital).  It was approaching week 30 and his family began to see signs that he was in the throes of giving up.  (As you I know, when facing a health challenge you have to keep forging ahead to maintain health and healing.)  His step-father was creative and called the local recruiting station and asked if a member of the army would be willing to come visit Austin in the hospital.  The army took it one step further and sent 6 soldiers.  The gave Austin a set of dog tags with his name on them and a plaque making him an honorary solider.

Watching Austin as he discussed the experience you could see something in his heart and soul re-ignited.  He was so surprised, as was his family, at the number of soldiers and grateful for the time they spent with him that it created a spark in him.  I have no doubt that the memory of that day will get him through the next 24 weeks of treatment.

When you hit that wall as many of just did the morning after the holiday; what memories will you refer back to as you venture forward on your journey to wellness.  I’d love to hear some of your stories.

For more information on health and healing check out the website at www.survivingstrong.com.

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It came as quite a surprise when I heard about the death of Elizabeth Edwards.  I had followed her story from her primary diagnosis and was always amazed at how she dealt with her illness.  I must admit I thought she said a horrible example at the start when she knew she had a lump, but waited till after the election to go to the doctor.  We all know that time is of the essence when cancer is the diagnosis.

When we learned that her cancer had returned and was metastatic; her ability to be positive, hopeful, and purposeful was truly inspiring.  Her concern for her children was admirable.  Even the news reports about how she was a “mother to the end” when she left the children a letter was very touching.

What can we learn from Elizabeth Edwards?  First and foremost was that when horribly stressful events/toxic events enter your life extricate them from your life.  This was the case when the news broke of John Edwards affair and child.  Elizabeth Edwards knew that this type of negative energy would not benefit her body’s ability to heal.  She removed that stress to the greatest extent possible.

I’m still a bit confused about the final news stories about her decline.  Day one we hear she stopped all treatment at the recommendation of her doctors and the next day she was dead.  I wrote a post about hospice in November and here’s a case where hospice would have been helpful and that would have been a wonderful example to set for others facing end-of-life decisions.

I want to thank Elizabeth Edwards for sharing her story.  I want to thank Elizabeth Edwards for her courage.  I want to thank Elizabeth Edwards for living a full life with metastatic disease.  I hope if you’re diagnosed with a life-altering illness that you follow the lead set by Elizabeth Edwards and live life fully while you can.

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Welcome to Art and Healing Wednesday!!

I’m always amazed at how impactful art can be in every aspect of our lives.  Last week I was watching my summer indulgence, “So You Think You Can Dance”, when they introduced a contemporary piece to be performed by two contestants.  The choreographer, Travis Wall, had been a contestant in the competition in season 2 so he knows the ropes.  Last year he began choreographing for the show bringing a fresh new perspective to contemporary dance.

The piece he choreographed was about his mother who had undergone some major surgery.  It depicted her struggle and the support she received from others throughout the process.  One of the two dancers performing the piece was able to identify strongly with the piece since his mother had breast cancer and had not only undergone surgery, but chemotherapy and radiation.  Before the dancers danced, the choreographer shared his perspective on the piece and that’s where the piece took on a life of its own.  Travis Wall stated, “Every step is a storytelling experience.”

When I heard him utter those words I was awakened to the possibilities that dance provides for self-expression.  I was also impressed at how he was able to share his story and how it resonated with so many in the studio audience and the viewers at home.  He was able to model how powerful our stories are and emphasized that there are a multitude of ways to share that story; his is through dance.

We’re all creative beings; it’s just that some of us have easier access to that creativity because we nurture it and use it.  The goal following the diagnosis of a chronic or life-threatening illness is to access the resources that already exist within you.  We’re all not going to be professional dancers, but most of us can move; even if it’s only tapping our foot.  If we have mobility in our hands we can write words that express our deepest thoughts and share both our struggles and our triumphs.  If we have speech then we can hum or sing a tune that resonates with our soul.  I always recommend that clients find a theme song that punctuates their story.  In fact, have a few so that as things change you always have a song to sing.

Travis Wall gave us the gift of his talent and his heart.  He was able to capture a part of his story and interpret it in a way that could be shared with all of us.  Even if you feel you can’t create, you can certainly enjoy, connect, and experience others’ stories by  being an observer/participant.  I hope you find the single step that will tell your story.

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Welcome to Caregiver Friday!!

We all remember those four famous words that start every fairytale from our childhood.  We remember the magic and wonder those stories provided and if you were like me you read the stories over and over again.  As we got older we were introduced to books and autobiographies in particular.  These stories told of famous people who made huge strides to overcome adversity in their own lives and the story showed us how we might accomplish the same thing.

As researchers study storytelling (yes, people study storytelling) they found that there is a subset of autobiography called a pathography.  A pathography is a story someone tells about their own illness.   Famous people are writing them all the time about the diseases they’re battling.  These stories bring attention to the illness in hopes of reaching out to those who feel isolated, but also to try and raise money for research and services.  Some of the famous pathographies are written by Michael J. Fox, Montel Williams, Suzanne Somers, Paul Monette, and Lance Armstrong just to name a few.

So what’s missing in the pathography category?  You guessed it; the story of the caregiver.  In over twenty years of serving those facing a chronic or life-threatening illness and their caregivers I’ve only seen a handful of stories written by the caregiver.  Unfortunately, many of them are written after the person they were caring for has died.  Where are all the stories about what it’s like caring for someone on a 24/7 basis.  Isn’t it time that we hear the flip side of the patient’s story so that we get a more complete picture of what’s happening in the arena of health and healing?

You may not believe that your story is worth a book; but I assure you your story is worth telling.  It’s why I believe support groups are so important because the story gets told.  Your voice about your experience becomes part of the collective consciousness and that huge.  So how will your story be told?  Maybe it’s not through a book; video is making big advancements and you can get a personal video recorder for just over $100.  It would be like making your own documentary…that’s powerful.

Start telling your story so that the world knows the illness experience from the caregiver perspective.  You’ll be doing yourself a favor not to mention how it will help those who follow you on this journey.

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