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Posts with tag alive

Read This: What You Don't Know Can Kill You

WOW, what a book -- a perfect guide for those just embarking on a medical journey and a valuable resource for people like me -- already surviving a major illness -- who wish to better manage their health care for all of time.

Author Laura Nathanson, MD, wrote What You Don't Know Can Kill You: A Physician's Radical Guide to Conquering the Obstacles to Excellent Medical Care in honor of the husband she lost after a series of misdiagnoses and for everyone wishing to prevent such tragedy in their own lives.

Nathanson offers readers techniques for identifying signs of misdiagnosis and misleading analysis of symptoms. She shares tips for preventing medical miscommunication, keeping safe in the hospital, and choosing health care plans without falling into the uncovered services trap.

The allure of this book is the easy, non-medical approach Nathanson uses as she urges everyone facing the medical world to take charge of an often inpenetrable system. For the patient who is no stranger to this world, Nathanson's words will ring abundantly true.

"When I look back on that long period of delayed diagnosis and how we were then and later bounced around from one medical specialist to another, the image that pops into my head is that of a slightly mad, grotesque volleyball game -- with the patient as the ball," she writes.

For the patient new to medical confusion, Nathanson's words will impart volumes of truth.

"Here's what I've learned, and what you must learn if you wish yourself and your loved ones to survive a bout with serious illness," she reports. "No matter who you are, physician or not, lucky or not; no matter how rich, famous, successful, good-looking, innocent, kindly or powerful; no matter how close and trusting the relationship you have with those providing your medical care -- you cannot rely on today's medical system to keep you healthy, safe and alive."

Amen.

Preacher sued for prescribing prayer over treatment

There is something to be said for the power of prayer. On the morning the lump in my breast was removed, a friend rallied more than 80 friends from our local MOMS Club to say a prayer for me -- at the exact time I was wheeled into an operating room. I know nothing of the prayer they said for me, but I do know I emerged from surgery with my breast intact and with the knowledge that my cancer had not spread to my lymph nodes.

I don't know for sure what role prayer played in my good fortune -- but I don't discount that it is in some way responsible for the fact that I am alive today.

But there are other obvious factors responsible for my survival -- like chemotherapy, radiation, physical therapy, targeted drug therapy, and counseling. So I don't think prayer alone saved me. I think it took a balance of varied forces to save my life -- a balance one Ohio man was not able to achieve.

The children of Darrell Perry are filing suit against their aunt, Darlene Bishop -- Perry's sister and an evangelical preacher -- who claims both she and Perry were cured of cancer through prayer.

Perry was not cured and died a year and a half ago from throat cancer. And Bishop now reveals she was never diagnosed with breast cancer -- like she claimed at one time -- but was merely worried she may have had the disease. Yet the message in her book Your Life Follows Your Words speaks loud and clear in its message -- that prayer can cure cancer.

Perry's children says their aunt is lying and exploiting their father for her own financial gain. They have filed two suits -- one accusing her of mismanaging and misusing Perry's estate and the other alleging wrongful death for convincing Perry to pray rather than seek medical help.

Visit with oncologist prompts same old routine

I will visit my oncologist on Monday for my every-three-month check-up. It's the recurring appointment that will appear on my calendar until I hit the five-year-survival milestone. I am three years away.

It's the appointment that consumes at least half of my day due to endless waiting -- waiting for a parking spot, waiting in the lobby, waiting in the exam room, waiting to pay. It's the appointment that officially begins with the drawing of my blood for lab work, continues with a check of my vitals, proceeds with a history review and physical exam with a medical student. It's the appointment that brings me face to face with the man who prescribed my treatment, the man who offers me strategies for living beyond treatment, the man who helps keep me alive. My oncologist.

And so I am preparing for this visit in the same exact way as I always do. I set aside a large chunk of time for this time-consuming extravaganza. I think a lot about the lab work and wonder if something suspicious will surface. I think a lot about the physical exam and wonder if an enlarged lymph node or mass in my breast will be discovered. And I think a lot about what I want to ask -- because this is my only very own allotted time for unraveling the mysteries of cancer with the man who knows the topic like no one else I know.

On Monday, I will ask a few questions. I will ask about tumor markers, about why I am not tested for these indicators of tumor growth, a standard option for my co-writer and co-cancer survivor Kristina Collins. I will ask about Zoloft, about how long I should continue taking this anti-depressant and how to best wean myself from this drug when the time comes. I will ask about the flu shot, about whether or not I can get one during this same appointment.

And that's all. For now. Until three more months pass and my calendar tells me it's time to return for this recurring appointment that takes me closer to the five-year mark.

Appetite for physical fitness diminished by fatigue

I am in a slump. I feel tired and slow and unmotivated. And ever since October 14 -- when I ran in the 5K Making Strides Against Breast Cancer event -- I can't seem to find the inspiration to exercise. I am making myself do it -- here and there -- but my usual drive and push and spunk are missing. Typically, I crave exercise and feel lethargic if I don't accomplish some sort of daily physical challenge. But for the past week or so, I have no craving, no desire to walk or run or lift weights, no appetite for my usual fitness routine. I am just plain tired.

Fatigue is a common side effect of cancer treatment -- even years after treatment ends, according to some experts. So perhaps my drop in energy and enthusiasm is due to the cumulative effect of my own treatment for breast cancer that just ended in June. My treatment spanned almost two years. Maybe it's no surprise my body is lagging behind my expectations for physical health.

Experts also say exercise helps combat fatigue. I believe this -- it's why I usually like exercise. It boosts my adrenaline, perks me up, makes me feel alive. If only I could get back into the swing of things, these feelings might come flooding back. But right now, I am not even thinking about how to find my old groove. I am just too tired.

Sunday Seven: Seven completely candid cancer confessions

I have a new friend who is a new breast cancer survivor. She is surviving a new diagnosis, a recent lumpectomy, and the moments leading up to another surgery to further investigate the margins surrounding the tumor removed from her breast. She is surviving the first phase of her breast cancer journey. A phase full of uncertainty and fear and panic. A phase so new and so fresh and so raw, her mind is whirling. A phase that has her grasping for any bit of direction she can find as she navigates a terrifying, unfamiliar road.

My friend is a young wife and mother whose worries are consuming her. She e-mailed me today and asked if I ever have moments when I look at my young children and worry that cancer will take me from them while they are young. She asked if I have always been so sure I will be okay. And so I replied with this candid cancer confession.

Continue reading Sunday Seven: Seven completely candid cancer confessions

Survivor Spotlight: Liane survives in honor of mother

Just two months after her mother lost her battle with gall bladder cancer, Liane was diagnosed with breast cancer. It all happened earlier this year -- and while Liane is still mourning the loss of her mother, she is also still managing the madness of her own disease. Liane is surviving with courage, with determination, with the same powerful spirit that powered her mother's fight.

Liane lives in a small city -- population 43,000 -- in northern Alberta Canada. She has been happily married for 18 years and has two daughters, ages 13 and 15, and a golden retriever named Sunny. Liane loves to garden, cook, read, and spend time with family. She normally works full-time in a real estate and property management office but has been blessed with six months off for treatment. Liane is already -- without a doubt -- a survivor.

Continue reading Survivor Spotlight: Liane survives in honor of mother

The Red Devil author inspires creation of support group

The breast cancer chemotherapy drug Adriamycin is often called The Red Devil. It's red in color and devilish in it's attack on both cancer cells and healthy cells. After her own personal attack by this drug, Katherine Russell Rich wrote a book, and she called it The Red Devil: To Hell with Cancer -- and Back. It's her account of how she got sick at the age of 32 with a relentless form of breast cancer. Although she was given just a short period of time to survive, Rich conquered cancer. And years later, she is alive and well. And she has discovered -- by mere coincidence -- that her book years ago inspired a group of women in Baltimore who are helping breast cancer patients through kind deeds. They foot the bill for transportation costs, housecleaning, and massage. They pick up and deliver medications. They gather and hug and eat. They take strolls. They call themselves The Red Devils.

Rich only found out about The Red Devils support group when a friend noticed a mention of the group in a newspaper. She informed Rich who visited the group's website. What she found took her breath away.

It seems a woman named Lark Schulze had at one time been desperate to learn about young women with stage IV breast cancer -- the same stage her 30-year-old daughter faced -- and she could not find any helpful resources. Until she came across Rich's book and poured herself into one woman's story. Moved by Rich's words, she tried to locate her, with no luck. So she took what she gathered from the book and after losing her daughter 19 months after diagnosis, became a founding member of a powerful support group -- The Red Devils -- in late 2002.

Despite failed attempts at finding Rich, Schulze says Rich changed her life. And now that the women have connected, Rich says Schulze has changed her life. At first Rich was afraid to be drawn into Schulze's world. But with a hunger to understand breast cancer from a mother's perspective, Rich took the plunge. She talked to Schulze, visited her, strolled with her, and soon the hard lump she'd carried in her stomach for so long began to soften as she connected in a deep and bizarre way with a woman she had inspired -- a woman she had never before known.

Battle with breast cancer offers crash course in awareness

Today marks the beginning of National Breast Cancer Awareness Month. And today, I realize how aware I am of breast cancer -- how much more aware I am than ever before, compliments of a personal encounter with a disease that snuck up on me with no warning and thrust me into a two-year battle that physically, has just ended. Emotionally, the trek continues. But it's not horrible and it's not disabling -- anymore. On most days, it's enlightening, empowering, strengthening.

I think it's the brush with mortality that woke me up to the privileged life I live. Cancer allows me to wake in the morning feeling alive. It allows me to fall asleep at night feeling thankful. And every day, I am totally, completely, acutely aware of how absolutely lucky I am to be living.

There was a time when October was nothing more than another month to me -- a month that stood out only for the onset of autumn and falling leaves and halloween and trick-or-treat. Now I know October for Breast Cancer Awareness Month -- the month belonging to millions of women living with breast cancer and the millions who need to prepare for a possible breast cancer strike. It's a powerful month, jam-packed with events and activities and promotions and media attention. It's a sad month, marking the loss of life for so many who could not conquer an evil disease. It's a happy month, symbolic of life that goes on despite this same evil disease. It's a month that allows me a lifetime membership. A month that will always be on my radar. A month I can call my own -- a month I am proud to call my own.

Little boys in hats are reminder of breast cancer journey

I wrote this journal entry one year ago today. It's one of many entries I look back on to remember my journey with breast cancer, to capture the emotions that preceded the ones I have now, to chart just how far I have come since the day of my diagnosis. This is one of my happier journal entries -- written at a time when I was coming back to life after surgery, chemotherapy, and radiation, when I was happy to be alive and in the company of two little boys whose simplicity inspired me.

My hats were once so important to me. Now they are scattered all over the floor of my bedroom closet. Once my daily camouflage for what cancer had done to me, my hats are now toys. Joey and Danny play with them and toss them around and wear them -- sometimes one at a time and sometimes they pile as many as they can on top of their little blond heads. The hats hold no real significance to them -- they are just playthings and while Joey can recall that I wore them at one time, the emotion wrapped up in the pale blue sleep cap and the black Nike ball cap and the yellow bucket hat is lost on him. I consider this a blessing -- that one day, he and Danny will likely have very little memory of this cancer adventure and that they may only remember what fun it was to wear so many hats.

Mister Rogers reminds people of all ages it's good to be alive

Our days start early now that Joey is in kindergarten and school begins promptly at 7:45 AM. His daddy gets him out of bed at 6:30 AM so he can have some time to wake to the world before shuffling out the door, and we've happily found that Mister Rogers' Neighborhood comes on at just this time. The same Mister Rogers that first appeared on television in Canada in 1963 and then in the United States in 1967 -- with a gentle man, Mister Rogers himself, spreading his calm but uplifting messages to children and nurturing personalities of kids everywhere.

The last original episode of Mister Rogers' Neighborhood was aired in 2001. And in 2003, Fred McFeeley Rogers died at the age of 74 after a brief bout with stomach cancer. But his legacy lives on as his show -- the longest-running PBS program ever -- still graces the television screen. I remember watching this show with my grandmother when I was a little girl. And now I get to watch it with my little boy -- who can also visit Mister Rogers on the PBS website.

Today, Joey and I started our day with a cheery little song, sung by the man who hated television and joined it only to bring about change -- to use this fabulous instrument to guide children in a positive direction. And here is what he sang this morning -- the song that is still playing in my head as I take on the day ahead of me.

It's such a good feeling to know you're alive.
It's such a happy feeling: You're growing inside.
And when you wake up ready to say,
"I think I'll make a snappy new day."
It's such a good feeling, a very good feeling,
The feeling you know that we're friends.

I hope it's a good day in your neighborhood.

Kindergarten milestone sweetened by bitterness of cancer

I don't take for granted that I am alive. I am fully aware of it, consciously grateful for it, continually amazed by it. Before I was confronted with breast cancer, I still knew I could die -- in a car accident maybe -- but I thought chances were pretty good that I would make it to a ripe old age. Death was never at the forefront of my mind. I had no reason to believe that life could be snatched from me. And because of this, I am sure some pretty important moments slipped by me, virtually unnoticed. But now -- after a breast cancer diagnosis, surgery, chemotherapy, radiation therapy, and then more therapy, I realize life is not a guarantee for anyone. Me included. Even at age 36, I am not safe. I feel confident about my future -- and I believe cancer has left my body -- but my life has been threatened like never before. And that makes me wake up and take notice -- really notice -- the moments that are too important to take for granted.

My first baby boy starts kindergarten today. Before cancer, this still would have been a monumental day for us both. But now, after cancer, it's even bigger. Because I know of several moms who did not survive cancer long enough to see their children walk through their first classroom doors -- moms who thought, like me, that they would surely beat cancer and would see their kids off for every first day of school. So I am lucky to have made it to this day -- to witness the wonder of my sweet, shy, sensitive, challenging, demanding, loving boy as he leaves the comfort of home for the real world.

Two days ago, my littlest guy said, "Mommy, I love you and want to keep you forever." Joey -- the boy whose wisdom should guide him right through his first day of school -- said, "Danny, you can't have mommy forever. One day she will die, and you will never see her again." Fortunately, his harsh meaning was lost on three-year-old Danny who kept playing with whatever toy was occupying him at the time. But his meaning was not lost on me. He spoke the truth. And so I plan to soak up the kindergarten moment this morning -- and photograph it and write about it and cherish it for my days to come. And in two years, I hope to do it again with Danny as he starts off on the same path. With me by his side.

Remembering journey toward light at the end of the tunnel

The tunnel was long. And dark. And winding. And foggy. And ominous. It seemed to last forever -- at the time -- and at moments, time seemed to stand still. I was not sure if I'd ever pass through it and be okay -- if I'd ever see the light at the end. But I did. I tunneled through it all -- somehow -- and I came out feeling more alive than ever before. Now, some time after my escape from the fog, I am already taking for granted the fact that I am breathing, that I am healthy, that I am living. And when my fitness trainer noticed yesterday that I do not get dizzy and lightheaded anymore during my workouts -- when I once had to sit down, breathe, collect my whereabouts -- I realized that some of my progress since exiting my breast cancer tunnel is already lost on me. And I don't want to lose sight of where I was and how far I've come. I want to remember it and measure it and never forget how alive I am at this very moment. So I have started to really think about how things have changed since I felt stuck in time, in a dark place. I am thinking about my times in a hospital bed when I was barely able to stand up, barely able to walk a few steps without feeling like I would collapse. Now I can hop out of bed at a moment's notice, half asleep in response to a demanding child screaming from his bed. I am thinking about my once challenging pre-cancer exercise routine and how a time came when my legs felt so heavy I could not even contemplate walking down my street. Yesterday, I completed an hour of weight training. Today I ran for 20 minutes. Tomorrow, I go back for more weight training. And I remember feeling incoherent, unable to conjure of meaningful thoughts or sentences. And now, despite some potential chemo brain forgetfulness, I am back on track.

I have only just touched the surface. There is so much more to reflect on. So I plan to think more about my travels so I can better appreciate how I arrived at the exact place where I am right now -- where it's light and clear, where time passes at normal speed, where I feel lucky to be alive.

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