Blogging The Journey, or just Blogging About Life

Another friend has been given a breast cancer diagnosis.  She spent the better part of last week at UAMS, in conference with her new medical team.  She’ll spend the next several months battling this nasty cancer – a disease that has taken the life of her mother and her sister.  My friend is definitely taking this unfortunate battle very seriously. 

A few nights ago we were visiting about what lies ahead in terms of treatment, side effects, timelines, logistics of care, and more.  My first piece of advice to her – get your home and life as organized as possible as the next several months you will only have the energy to battle cancer.  Home maintenance, yard care and deep cleaning will definitely be put on hold for a while. 

We then moved to the topic of keeping family and friends informed.  She’s trying to make that decision now about how to do that. 

There are several options including electronic mail to a designated list.  After my diagnosis, email updates seemed like the most sensible way to go – that is until I began to think about who to include on the distribution list.  If email becomes the communications tool, there is the very real potential of leaving people off who really care, and including others who would rather not be bombarded with regular email updates.  I quickly moved from email to social media. 

There are many advantages to using a social media network:

§  It eases the burden of the patient, eliminating time-consuming phone calls and emotional conversations.  With social media, one post can communicate with an unlimited number of family and friends. 

§  Loved ones far away feel much more connected during the serious illness of someone they love. 

§  It allows those who want to keep up with your health updates to voluntarily go to your online site.  There is nothing intrusive about your blog whatsoever.  Engagement is strictly voluntary. 

§  Blogs and other social networks allow friends to leave a message.  New research shows that verbal support from loved ones, connecting with family and friends is extremely important for those dealing with a serious illness.  It lifts the spirits, relieves stress, and creates a compassionate community that brings hope and a sense of healing.  

Creating my own blog was the option I chose.  Being in the public relations field, it seemed only natural that I should use the same communications tool I recommend to many of my clients.  There are also other online alternatives to creating a blog that make it very easy – like CaringBridge and CarePages.  Both of them are free website blogs that connect friends and family during a health challenge. 

When battling cancer or any other compromising disease, the primary consideration is what is most comfortable for you.

While there are those who will choose to keep their health battle private, I for one am convinced that there is power in the connection with and love from friends.  Blogging also helped me find my voice, and allowed me to express my thoughts about the struggles cancer brings to all those affected.  It served as a soul cleansing for me. 

But remember – blogging is not just for the sick.  There are several blogs I follow from very healthy family and friends who’ve created a blog for different reasons.  Family friend Lindsey keeps a blog about her current adventure - studying abroad in London.  My daughter Allyson keeps a blog about transitioning from college into the world of work and adult life.  Heather’s blog, Sunshine Dreams to You, is about discovering a life of dreams fulfilled with our authentic selves.  And a friend from Hendrix, Mr. Bobo, varies his posts from nostalgia to humor, my favorite being his suggestion of friends gathering to help write one another’s obituaries, with martinis included.

Blogging is becoming more and more popular each day.  It’s fun, a creative outlet, an avenue to be heard, and a way to stay connected, or sometimes create new connections.  Why not give it a try.  There are many reasons good reasons to join the blogosphere. 

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Seek magazine is a publication of the UAMS Winthrop P. Rockefeller Cancer Institute.  And during this last year, I’ve found the stories and articles published to be not only informative but very inspiring too.  This month Seek has a story about patients who share their cancer journeys online – Coping One Keystroke at a Time.  WARNING:  Yes, the story mentions my blog, but there is also the story about another blogger, a husband from Atlanta, who found comfort during his wife’s struggle with multiple myeloma.  

 

Treatment Side Effects • More Treatment • More Side Effects

The cancer is cured, but the physical and mental burden of treatment side effects continues.  And that’s the reality for a cancer survivor. 

The long-term side effects of chemotherapy can be many, including, heart & kidney failure, infertility, liver problems, lung disease and cataracts.  For me, chemo’s side effects have mainly been continued fatigue, chemo brain and osteoporosis.  Dealing with fatigue is simple – more sleep.  Adjusting to chemo brain – well, it’s the hope that it will disappear in time.  But the loss of bone density has been uncomfortable, sometimes even painful.  And in my case, I’ve also broken a few bones in my feet.  It’s not been pleasant. Bone density loss is not only caused by the chemotherapy but also by the hormone inhibitor that I take daily – Arimidex.

But today I’ll begin a new treatment that should improve my bone density levels, where my legs, hips and lower back have experienced porous and brittle bones.  I call them my paper bones, very fragile and not so strong.  Hopefully this will be another new wonder drug in my life.. 

Reclast is an intravenous infusion that I’ll take annually – yes, once a year.  Wouldn’t it be great if we could take our drugs only once a year?  The Reclast will hopefully strengthen by bones and protect them from broken bones and fracture for an entire year – and then I’ll receive another infusion of Reclast next year, and the year after, and the year after.  It’s that simple. 

And there’s good news about Reclast. In fact, the news is so good that I’m almost happy that the various drugs have given me arthritis.  For women with aggressive breast cancers who’ve received aggressive chemotherapy treatment, who have then developed osteoarthritis and received Reclast as a treatment drug, researchers are recording a reduction in cancer recurrence.

Did you say a reduction in recurrence?  I’m all over that!  Another notch in my belt to hopefully never see this cancer again!

Researchers are not certain as to what it is about Reclast that is attributing to a reduction in cancer recurrence.  That’s why I’ll also join a research study at UAMS to hopefully discover the connection.

Oh yes – there are side effects of Reclast.  Short-term side effects at the time of infusion include flu-like symptoms including fever, muscle and joint pain, and headaches.  Long-term side effects can include atrial fibrillation (abnormal heart rhythm) and increased risk of stroke. 

Oh well, you’ve got to take the good with the bad.  I’m ready to get these bones back to where they were, strong again, no pain.  And when the bones are repaired, I have a beautiful new bike waiting for me in the garage, a gift from dear friends, and I’m anxious to get these legs back to work, get back on my bike and ride! 

Here’s to Reclast!  

BReast Friends Forever

I’ve long had my best friends.  But during the past eighteen months, I have built a cadre of “BReast Friends.”  It’s my new sisterhood, women like me who are battling, or have fought the battle of breast cancer.  This morning I have made added a new sister, a new BReast friend into my life.  Her name is Denise.

Denise found me on the Internet, through this blog, researching her doctors at UAMS.  We have the same medical team – Klimberg, Makhoul and Yuen – which is excellent news for her.  And because Arkansas is one small town, we figured out through social media that we have several friends in common.  That’s all we needed to know to legitimize a visit by phone this morning. 

Like me, Denise is a mother and a professional woman, as well.  And like many of us, and another 560 women each day in the US, she has been given the devastating news of breast cancer - Invasive Ductal Carcinoma.  Some will say IDC is the most common type of breast cancers.  But for those of us who are survivors, we know there is nothing “common” about any kind of cancer.  It’s all terrible, none of it good!  And that’s what Denise and I talked about this morning by phone.  This week she will put on her boxing gloves and begin her wrestle with the alligator, the first of eight chemotherapy treatments.

We talked about the miracle potion called chemo, losing your hair, wearing hats versus wigs, learning to receive rather than to give, the tough road for our children, and the all-powerful love of family, friends and colleagues.  We visited about food, not tempting the nausea Gods, eating stomach friendly protein foods like chicken and eggs.  And then we talked about UAMS and our medical team, and I assured her that she was in the best hands. 

My new BReast friend feels like all of us at the time of our diagnosis – the Jekyll &Hyde dilemma, I call it.  One minute you feel incredibly empowered, filled with all the courage needed to kill the beast.  And then, without any warning, a wave of fear consumes your soul, the vulnerability of a daunting disease that has invaded your body and turned your life upside down.  But in the end, Denise will be fine, as she has found spiritual peace in the words of Joshua 1, verse 9:

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”

Denise and I have not yet met, but we’re already fast friends, BReast friends, women connected through the unfortunate journey of cancer.  But she will join our sisterhood and will be blessed by the love of so many good feminine souls – friends like Ellen, Kathy, Frances, Paula, Kelley, Meredith, Liz, Robin, Carol Ann, Mary, Mare, Barbara, Angie, Coco, Penny and so many more.  Some of these strong women I have known for almost a lifetime; others I only met this year.  Most have had breast cancer; some have experienced other types of cancer.  But they have all blessed me with their strength and perseverance, courageous spirit and inspiration.  And yes, they have all survived this nasty cancer. 

Welcome Denise, to the BReast Friends Club.  It’s not a club any of us wanted to join, but we’re here for you.  Rest assured, your BReast friends will love you, care for you, serve as prayer warriors and be by your side when you need us.  We’ve faced this journey before and have all landed on the other side.  Yippee!  We’ll stand by your side as you walk down this tough road called cancer, and we’ll be there to celebrate when you cross the finish line too. 

Prayers for you Denise – for hope, faith, courage and healing. 

Me, and millions of others, pondering Heaven

One of the things I have always liked about travel is the ability to be without the distractions of home and read a good book.  And that’s what I’ve done on this trip to DC.  I’ve actually read two books and now reading my third. 

The first book I read my mother recommended, even though she’s not yet read it. She shared with me a book given to her on Mother’s Day by my nieces, Emily and Olivia.  As Mom began to share the story with me, I was immediately captured.  For you see, like so many who believe in God, I have been forever curious about what awaits us at death.

If you haven’t read Heaven is for Real by Todd Burpo, I highly recommend it.  It’s short, an easy read, and to the point – and the amazing story of a 4-year-old buy who entered into heaven when he went into unconsciousness during emergency surgery for a ruptured appendix.  Months later, the young boy, Colton Burpo, begins to share bits and pieces of his brief visit to heaven, thus the book seven years later written by his father, author Todd Burpo. 

I recall the time many years ago when Anna-Lee was about the same age, a little younger.  It was a Saturday afternoon and the girls and I were napping.  Long story short, Anna-Lee woke me up to tell me there was someone in our house, downstairs in the kitchen.  Once the police arrived and confirmed that we’d had an intruder, they also confirmed children at this age can’t make this stuff up. 

And while children at this age have little capacity to relay much beyond their own experience, I began my reading with a critical eye for an embellished story by a pastor-father looking for a book opportunity.  I never found it.  Instead, I found Colton Burpo's childlike descriptions to be a refreshing depiction of what awaits each of us whose destiny is Heaven.  Colton confirms that Jesus really does love children, and he encounters his great-grandfather “Pop” who he has no knowledge of since the man died in a car accident thirty years ago, when the author was only six-years-old.  He also meets a young child who he says was a sister he didn’t know about – Colton not knowing that his mother had miscarried a child before Colton was born.  There is much more. 

Colton’s story helped me revisit a nagging question I’ve had for many years: If we know we’re going to die, why are we so afraid of it? 

Let me be clear.  I’m not saying we should give in to death, throw in the towel at times of life threatening accidents or disease.  Oh no, not at all.  Life is good, and our obsessive nature to prolong life with ordinary means is what brings about recovery, a patient’s turn for the better, survival and a renewed sense of living.  But if what Colton experienced is for real, and because Christ invited us to come to Him and receive the promise of heaven, then what is there to be afraid of? 

If the promise of heaven is not something you believe in, this book is probably not for you.  However, if you mourn the loss of someone special in your life, if you wonder if you will be reunited with those who have passed on, if you are looking to find comfort in the finality of death, this Colton Burpo’s story IS for you.   Like me, I hope you find a sense of calm and reassurance from this inspiring story. 

Another thing you might want to know – this book, Colton’s story, has been on the New York Times bestseller list for the past 27 weeks.  Click here for a great NY Times review.  No doubt, I’m not the only one curious about heaven.