donna-pastureI am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom to impart

What I do have to pass along is hope. Such a little word but one that has the ability to change your life. Hope crowds out anxiety and pushes away fear. It fills you with peace and can motivate you.

“Where in the world is she coming from?” you may be asking. “How can anyone write about hope when the world is crashing down around us, when we’ve learned that we’re fighting a deadly cancer, when life looks bleak?”

Well, I admit that I am a glass half-full kind of girl. My tendency has always been, and continues to be, to look at what’s positive and to minimize the negative. I refuse to let fear…or cancer…control my life. The way I look at it, if I spend time worrying about the “what ifs” of tomorrow, I am allowing cancer or fear to control my today. And I am not willing to give this &#$%!@ disease one moment more of my time than I absolutely must.

donna-dogsAfter my first oncologist told me that I had stage IV lung cancer and that he expected me to live for about four months, he asked if I had any questions. He stood open-mouthed and nearly speechless when I replied, “Yes. Can I keep playing agility with my dogs?”

Agility and my dogs are my passions. I enjoy nothing as much as I enjoy being out on the agility field, directing my two dogs around a course full of obstacles they have to negotiate. The sport requires mental acuity (you have to remember the course!), stamina and strength. There’s no time for thoughts of cancer, sickness or death when I am on the agility field. (If you don’t know what dog agility is, you can watch one of my runs with my Sheltie, Barney.)

Stress and lack of exercise have both been blamed for causing health problems. Getting out and being active, doing something I love, has great health benefits. Those four months I was given back in 2012 have been extended a bit!! And I have enjoyed every day of the extra months and years I have been granted.

Of course, we can’t credit just exercise and lack of stress for my unexpected longevity. Despite the fact that lung cancer research is horribly underfunded, dedicated scientists and doctors are making progress in finding treatments that are offering more and more of us a longer life. Targeted therapies are designed to attack just the malignant tumors. In many cases, that means that patients are not as sick as when the only treatment option was chemotherapy, which killed good and bad cells without discrimination.

butterflyBecause of the progress being made in targeted therapies, it is highly recommended that all lung cancer survivors have their tumors tested. Genome sequencing provides oncologists with information about the makeup of the tumor. Based on this information, treatments that have been proven effective against that specific type of tumor can be used. The likelihood of successful treatment is much, much greater than when a general chemo is used.

In addition to targeted therapies, work continues on developing immunotherapy. Immunotherapy works with a person’s own immune system, teaching it to recognize stealthy tumors that have escaped its notice previously. I am the beneficiary of immunotherapy treatment. From the moment I began receiving nivolumab (Opdivo) back in 2013, my tumors stabilized. To this day, they remain in my lungs, but they are just sitting there, doing nothing.

While every person is different, I have had minimal side effects from immunotherapy. My thyroid quit working properly, but that is easily remedied with a little pill every day. I suffer a slight bit of fatigue but nothing compared to what I felt when I was getting chemotherapy.

Nobody wants to be diagnosed with cancer. Nobody. But if I have to battle lung cancer, this is a good time to do it. Breakthroughs are coming faster now than ever before. More and more of us are defying the odds and living five, 10 or more years past our diagnosis.

My message to you is to not give up. Take control of your life. Ensure that your oncologist is offering cutting-edge treatments: genomic sequencing of your tumors, targeted therapies, immunotherapies or combinations of chemotherapy, targeted therapy, and/or immunotherapy. And to the best of your ability, live your life. My favorite saying is, “I have cancer, cancer doesn’t have me.” Another is, “Live your life, not your cancer.” Don’t give cancer any more of your time than is absolutely necessary!!!

Happy 2017! I’m looking forward to what this new year will bring. I expect that we will be learning of even more treatments that will see more and more of us beating the odds against this beast!

Hating cancer…loving life,

Donna Fernandez

Owner of blogspot, MyBattleWithLungCancer

journeyEvery week for the last few years, I’ve been commuting from my home in the country with my husband to my job in the city.  I wake up at 4:30 AM on Monday and try to get out of the house by 5 AM, so I can try to beat traffic.  It SHOULD only take me 1-1/2 hours, but it has taken me up to 3 hours to go the 70 miles.  Frustrating! Instead of focusing on the time or the traffic, I try to see it as an opportunity to listen and learn something new by downloading books on Audible.  The books range in topic from humor, self-help, inspirational, business-oriented, to fiction.  This last book was super inspiring and sort of reminded me of my own journey of tackling an obstacle in the road. The book: “On My Own Two Feet” by Amy Purdy.

If you haven’t heard of Amy Purdy, the gist is she lost her legs (below the knee) from bacterial meningitis when she was 19.   She was an avid snowboarder and massage therapist, and most of all she was loving life when she encountered this detour.  While she was healing and navigating her “new normal,” she stayed determined not to let this get in the way of what she truly loved.  Sure, she hit some bumps in the road, but she overcame them by seeing them as opportunities. Today, she’s a successful inspirational speaker, Olympic medalist in snowboarding, and so much more.  This book was awesome, but surprisingly it spurred some emotions of my own parallels with her losing her legs to me losing my breasts.

We can’t change it; we have to decide how we’ll respond to it.  – Randy Pausch

Even after six years, I’m still amazed at how little things (like a book) can transport me back to that moment in time of getting diagnosed and going through treatment for breast cancer.  I want to forget it, but it’s hard.  Sometimes, I think maybe we’re not meant to forget these times where we’ve transformed into something else…a new normal.  As cancer patients, this is a new way of living, a new way of thinking, and accepting it all to keep on moving and doing what we love.

As Amy talks in her book about the scars she has, she’s learned to love them as a reminder of what she went through. There is a part in the book where she describes lying in bed, looking at every inch in her body in the mirror and realizing that she was still whole.  From that moment, instead of trying to cover her scars, she tries to show them off.  In some ways, I can relate to this scenario.  After my mastectomy, I didn’t look in the mirror for 3 months.  3 months!  I couldn’t face it. I couldn’t imagine myself without breasts.  But when I finally did look in the mirror, I realized it wasn’t as bad as I made it out to be in my head.  Today, with the help of reconstruction and some fancy 3D tattoos, I’m more comfortable with my scars.  I don’t go around showing everyone my scars like Amy, but I’ve learned to accept them in the moments when they are exposed (like at the gym).

What you love is a sign from your higher self on what you are to do – Sanaya Roman

I think that when we’re going through something tough, if we can keep doing the thing we love, even for just a bit, it helps us get to the finish line.  Running did that for me.  I ran through my treatment which allowed me to not only focus on something positive in my life, it ended up helping with a lot of side effects from chemo.  Running has been one of my passions for the last several years and is my go-to when I find myself stuck in the downward spiral of what happened in the past.  It allows me to have time to reflect and figure out my next steps (no pun intended).  Even today, when I’m feeling overly anxious because of something that triggered an emotion of cancer, I go for a run.  It helps me balance and organize my thoughts and get back to my new normal.

At the end of the book, Amy mentions that losing her legs didn’t limit her from what she was meant to do; it was an obstacle that she could push off from.  Interesting and good reminder that losing my hair, my breasts, and my ovaries from cancer didn’t limit me from being any less of a woman. My hair grew back, I had reconstruction to replace my breasts, and I’ve learned to deal with being post-menopausal before any of my friends and how it affects my relationship. Going through cancer wasn’t a gift, but it was an opportunity for me to push off from that obstacle to find my true passion and to help others.

At the starting line, running through life one race at a time,

 

Rebecca Seago-Coyle

On March 25, 2016, a catastrophic moment in my life changed everything for me and my entire family—my 33-year-old son, Jordan, was diagnosed with cancer along with severe brain disease of unknown origin. Upon being told the diagnoses, my breathing stopped and my heart skipped a beat as I experienced every mother’s nightmare—finding out that your child has a life-threatening illness. As the doctor spoke, his mouth moved but I was frozen in terror, unable to hear anything he was saying, unable to move or articulate any appropriate verbal expression. As he outlined what would surely become a whirlwind year of surgery, chemo and radiation therapy, my mind swirled with the horrors of such horrific diagnoses. I’m a nurse! I’m a professional patient advocate! I’m a mommy! How could this be? How could I protect my son from the dismal and unpredictable reality he was now facing? How could I protect him from the pain…and the suffering?

As we listened to the doctor give us the bad news that would change our lives forever, I gently wiped away my son’s tears with my bare hands, blinded by my own tears that streamed uncontrollably down my cheeks like an open faucet. The pain and the terror were too much to bear. My son and I embraced as we shamelessly wept together. I remember whispering in his ear that everything would be all right, but how could I knowingly tell him that? There were no guarantees offered of a perfect outcome. Despite assurances of a high cure rate for the cancer that he had, what if he fell into the lower incidence of a dismal outcome? In the face of a potentially life-threatening illness, how could I not be totally honest with him? That one moment solidified my commitment to him and to myself, that everyone involved in his care would be expected to be totally transparent and honest with him. He should…and could…expect no less than that. That openness and truthfulness would serve to empower him as he could now develop relationships with his medical team based on respect and trust. He could ask the questions that needed to be asked, feeling comfortable knowing that he would have access to all the information he needed for thoughtful analysis and decision making about his situation and ultimate care. In all of his misery, he remained calm, accepting, thoughtful, analytical, mellow and mindful. He quickly became a great advocate for himself. He never once said, “Woe is me” or “Why me?” ” Despite all that he was facing, he became a role model for each one of us to emulate.

Once our tears ebbed, I told my son that our family hysteria was now over and that we would pick ourselves up and move forward to do whatever we needed to do to get him well. His new life reality and full-time job for the next several months would be going through all of the nuances, appointments, surgeries (more than seven), treatments, diagnostic tests and other assorted processes necessary to save his life and get him well. While I put on a good show for my son and had everyone fooled about how strong I was, I will admit I was terrified. During those rare moments when I was away from his bedside, I would break down, sobbing hysterically over and over again ” Please God, I don’t want to lose my son”. “Please God, I don’t want to lose my son”. Even as I write this account, tears stream down my face as I recall those anguished private moments between me and my Creator.

We moved our young family from New York City to Charlotte, NC in 1988, when Jordan was five years old. In 2013, he moved back to New York City to attend graduate school at NYU. Fortunately, he finished his program just prior to the onset of his major presenting symptom, horrifically painful and debilitating headaches. During one of our frequent telephone conversations about 6 weeks after the headaches began in early February, he quietly wept, telling me he was unable to bear the headache pain anymore. I was on the next flight to New York City. The following morning, we were in the Emergency Room at wonderful Lenox Hill Hospital getting an MRI of the brain. That was March 18, 2016…and so began our journey into darkness. A journey that would propel us through a surgical lymph node biopsy, two brain surgeries, brain drainage tube, Ommaya Reservoir in the brain, bone marrow biopsy, CT Scans, X-rays and MRIs too numerous to identify, PET Scans, seizure activity, EEGs, chemotherapy, radiation therapy, second opinion at a large cancer specialty hospital, skin biopsies, multiple daily blood tests, multiple visits to the Emergency Room, three kidney stone operations and much dread, pain and fear.

Jordan spent a total of forty-seven days as an inpatient in the hospital, 24 them in the intensive care unit. For 47 nights, I slept on a recliner at his bedside. Spending that amount of 24/7 time in a small hospital room with a beloved son facing death not only impacts your life, it changes your life forever. How could you experience such a “moment” in your life and not have it change you?! My momentous change came initially when my son was first diagnosed and snowballed into a major life shift for me over the many terror-filled months. This upper middle class baby boomer BECAME A MINIMALIST!

Prior to my son’s illness, it was not unusual for this germaphobic nurse to shower twice a day. I would never wear clothes more than once without laundering them. Makeup and lipstick were essentials before leaving the house. I never took my diamond engagement and wedding rings off. I washed my hair every day. The socks had to match the shoes, and every outfit I wore had to be color-coordinated. However, once I “moved” into the hospital along with my son during his first hospitalization, my status quo changed instantly and dramatically. I now found myself wearing the same clothes for days at a time. I didn’t shower or shampoo my hair for days at a time. I took off my diamond rings, necklace and earrings. I stopped wearing makeup. I cut my hair ultra-short, so I didn’t need to bother with it. I walked around the hospital in hospital slippers. I ate hospital food, lots and lots of bagels with cream cheese, and enormous amounts of cookies and pastries that visitors seemed to think were the perfect gift for such a scenario. I slept on an uncomfortable recliner instead of on my Tempur-Pedic mattress. And I didn’t care! My entire being was focused on my son—as mommy, as personal head nurse, as caregiver, as patient advocate. I realized very quickly that woe is the patient who doesn’t have an advocate with him or her at the bedside. I became impassioned and obsessed with advocating for my son. Nothing else mattered. Nothing else was important. No one touched or treated my son without a thorough verbal investigation by Mama as to their intent and as to the last time they washed their hands.

My son’s illness has brought me to my knees…on more than one occasion. When the doctor tells you ” you have a very sick son”, the terror spreads through your entire being, paralyzing you in an instant. The days and weeks and months pass by ever so slowly as you anguish over end of life conversations and other related issues that tear at your gut and rip your heart apart. Each morning you wait for the doctors to make rounds to find out what trauma or bad news the medical team has in store for you that day. The days all seem the same, long segments broken up by the delivery of meal trays and multiple diagnostic procedures. It’s impossible to keep track of the day of the week and the actual date. The only way you can tell one day from another is by tracking the days of hospitalization on the whiteboard installed on the bleak wall of your hospital

With lots of time to ponder about my son’s precarious predicament and on life in general, I often reflected on the perfect and “great” life I had been privileged to enjoy up until my son’s illness. I chuckled at the obsession we Americans have with the life-long pursuit of material things. I thought about how the acquisition of those material things often becomes the motivation for selling one’s soul to the devil. My momentous enlightenment came as a result of my son’s grave illness when I realized that material things are totally insignificant and meaningless when someone you love is suffering and facing the reality of death. The biggest diamond ring in the world won’t bring you back your dead child. A costly work of art can’t guarantee you won’t get sick. A fancy car doesn’t take you to exciting places if you have a debilitating and chronic disease. Expensive vacations don’t bring you health and happiness.

So what is it in a minimalist life that brings joy? What is it about living simply that allows one’s soul to transcend, finding a relaxing comfort zone within the demonizing rat race of materialism, in a place where serenity and calm prevail and where the soul can flourish and find peace?

Living a minimalist life allows you to feel joy in the simplest of things. Laughing at dad’s squeaking shoes as he tries to tip toe around quietly while navigating Jordan’s hospital room. The comic relief of a joke shared between mother and son that could only be appreciated through the intimacy of sharing a tiny room 24/7 for 47 days. Deriving extreme pleasure from visits by pet therapy dogs, whose only goal in life is to lick you, bringing comfort and love. Being spiritually uplifted by tunes from the hospital’s music therapist, who sings, strums and drums away many of the dark moments along the journey. Achieving total relaxation from the massage therapist as he massages out your tension, stress and fear. A beautifully decorated cupcake from the dietary department which ushers in your birthday on day 30 of your hospital stay, along with a cheerful off-tune rendition of the Happy Birthday song. A hand-made birthday card that the night nurses create so you would have birthday greetings waiting for you at your bedside the minute the clock strikes your birthday hour. The excitement of the snack lady’s visits as she makes her rounds in the late afternoon, offering delicious snacks and beverages in exchange for boredom and fear. Having the nurses who cared for you on another floor find your new room location and visit you during their meal break. The hundreds of get well cards, texts and emails from family, friends and even strangers, which communicate to you that you are not isolated from the outside world, that others care, and are reaching out to embrace you in the shelter of their prayers, good wishes and love. The doctor who stops by for a visit on his way home after a grueling day, just to see how you are doing. The doctor who sends your mother a text on Mother’s Day …”to the best mom in the world”. The nurse who feels your pain and holds your hand during a painful and scary procedure. The elderly volunteer who brings you fresh ice water just as your throat becomes dry and parched. The GoFundMe page your beloved older brother starts for you that raises over $39,000 in a few short months. The Chaplain who says a prayer for you, even though you are of different faiths. The doctors who thank you for your patience and courage during emotional days of painful diagnostic testing, while they attempt to solve the mysteries of your diagnoses and figure out how to save your life. Those same doctors who support you on your daily emotional roller coaster and who tell you they love you. It doesn’t get much better than that!

What are the simple joys of living a minimalist life you might ask yourself? They don’t get any better than the relationships one gathers along life’s journey. Relationships in which simple random acts of kindness can and do change the world, one kindness at a time. Who needs diamonds when the brilliance of relationships elevates the soul, inspiring one to greatness and a sense of purpose and direction… and of feeling loved? After almost seven long and arduous months, Jordan is finally back at his apartment and continues to get treatment as an outpatient. I can see him physically improving each day. I can see his spirit getting stronger each day. I remain with him, caregiving, cleaning, shopping, cooking and advocating for him. Even as things start to improve, I can’t help but agonize over the fears of a possible re-occurrence which lurk just within my conscious mind, ever present to undermine my best efforts to suppress them. I guess I will just have to learn how to live with those fears. Jordan deserves a shot at the most normal life he can live. After everything he has endured, he deserves all of God’s blessings and good grace.

As my son gets better and each day brings him closer to normalcy, I contemplate a return to my own normal life, 750 miles south of NYC. I refer to ” normal” rather sarcastically as I know that my life will never be normal again. I am forever changed by my son’s illness and will never be the same “normal”. I know that I will go to sleep every night thinking of him and will awaken every morning with him in those first thoughts of the day. I will wonder how he is managing. Is he physically able to keep his apartment clean? Shop for himself? Cook for himself? Is he sad? Scared? Does his head ache again?

I also ponder whether or not I will fall right back into my former materialistic life in my 4,000 square-foot home with a flat screen TV in every bedroom. Will I be able to resist the temptations associated with the materialistic lifestyle of the baby boomer? I actually fear moving back home. How do I re-invent myself? How do I go back to the job that I walked away from so many months ago? How do I re-adjust to a kitchen stocked with every appliance and assorted kitchen item that you could think of? How do I choose an outfit from a closet bursting at the seam with more clothing and shoes than any one woman really needs? How do I pick up the pieces of a life after an absence from that life for so many months? How do I intimately re-connect with my wonderful husband when my life has been myopically consumed for and by our son’s well-being for more than nine months…and in perpetuity moving forward? Only time will tell. So yes, I’m wearing the same underwear for the past five days and haven’t showered in almost one week. I couldn’t care less. I’m a minimalist now.

Lorrie Klemons, RN, MSN
Care Partner Advocate & Blogger, Patient Power
Co-founder, Patient Action
Advocate/Educator/Consultant/Speaker/Author/Poet

worldwideIf you are reading this, you are probably what we would call a “powerful patient.” You are engaged, you ask questions, you get second opinions, you stay informed. But, sadly, there are many more people who are not like you and me. They are terrified and depressed about their diagnosis of a cancer or other serious condition, and they want to believe the first doctor they see knows all there is to know and has everything at their fingertips to help them get well, or at least to do the best possible.

You and I know it’s not at all that simple. As someone living with two blood cancers, CLL and myelofibrosis, AND living well because of good medicine and expert care, I am propelled ever faster to bring our services and message to more people who, otherwise, may be suffering much more than needed. You can help, of course, as you (1) make sure you are a patientpower.info “member” (that means having a login and password); and, (2) sharing your voice with information about yourself and how you are doing and your interests; and, (3) telling others about us. That’s what gives power to our community and adds momentum to us helping others with more programs, more updates, more informative surveys that we share with scientists and government.

So in 2017 we will peddle faster. Here’s what you can expect very soon:

  • More condition-specific blogs throughout our website
  • Original programs in multiple languages including German, Spanish, French, Italian and Portuguese
  • More outreach in social media including a new Facebook platform called “The Cancer Connection”
  • Frequent Facebook live broadcasts from me and Esther and other Patient Power team members and contributors
  • More collaborations with other “best in class” organizations such as with the “Precision Medicine for Me” initiative we are launching this month in lung cancer with PatientsLikeMe, Antidote (a trial finder tool leader), and several lung cancer advocacy groups and activists. We hope to extend this to other conditions soon.
  • In-person and broadcast town meetings at major university cancer centers and leading community oncology groups—the next CLL one is at MD Anderson on February 18.
  • Monthly interactive live “living with” video discussions with experts
  • A special series to help you understand what lab tests you need and what the results mean
  • Sequential surveys of our communities partnered with major academic cancer centers
  • New health centers, including one for acute leukemias

Whew! It makes my head spin and maybe yours too. But we have a very energized team and great, helpful community members like you. And, as we do innovative, independent projects I am seeing government, industry and medical societies lining up to collaborate—as they should!

So while you and I have no idea what twists and turns our health may take in 2017, there is much to do to help ourselves and many, many others. Let’s get going and thank you for joining Patient Power on this journey!

Wishing you and your family the best of health!

Andrew

“This was me 10 years ago prior to second-line FCR therapy. Dr Sharman’s comments were interesting, but here I am unmutated; 11Q; and it gave me so far a 10-year remission. Ours is such an individual challenge to treat, and I wonder just what would have happened to me if I had not had FCR?? […]

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Dear Patient Power friends and members, Esther and I are really excited about 2017 as we are making great efforts to improve what we do, with several partners, to help people with illness live better and live longer. And, as you know, we often report upbeat news that gives us hope. But sadly, too often […]

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Regardless of political perspective, geographic place, cultural or religious persuasion—this year has been, in a word, tumultuous.  Overlaid on the ups and downs of any place on the cancer experience continuum…well, it definitely makes me excited to usher in a new year! Personally—for Andrew and I—we have been fortunate to have a medical year of […]

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  There you are—stuck in the house caring for your loved one. You may have not yet figured out how to set boundaries and how to make time for yourself, but that will come. Read my October blog “Boundaries” to learn how to establish and maintain boundaries. Be patient with yourself. You will figure it […]

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My life before Friday, May 13, 2011: I had recently remarried and was settling down to a nice life with everything to look forward to. I was working in sales & marketing management and really enjoying my life.  Married with two step-children and two from my previous marriage –  children are everything as they keep […]

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Lung Cancer Awareness Month is over. Or is it…? It’s been some time now since I had that ah-ha moment where I realized I was indeed an advocate. And to be honest, it’s been a hard road.  When I first started writing, it was all about me, my family and how at times, things were […]

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