HOW SOCIAL MEDIA CAN HELP PEOPLE WITH CANCER

     Being on Medicare sometimes makes me feel like an old fogey.  I have no idea how to use most of it, because Snap Chat, Tweeting and Twitter are mysteries to me.  A good friend once remarked that a smart phone can make one feel so dumb.  He is right.

     I am concerned about the dangers, parental controls and perverts on social media who prey on children and teenagers.  I am not naïve and know some of the aspects of these features can be bad.

     What we cancer survivors need to realize, however, is how we can use it to our advantage.  I am usually a glass half full person.

     Before my diagnosis of Myelodysplastic Syndrome, I was on Facebook a little.  I mostly used the Internet for research, and as a former librarian this is easy for me.

    I made a conscious choice to primarily use Facebook.  I have limited time and energy to learn about Twitter and some of the other parts of social media.  Each person needs to decide what he or she wants to learn and do. However, I do use Facebook and messaging.  I try to remember how I coped without texting and it was not well!

     Facebook for me has become more than a fun social media to catch up with friends. Instead it is a wonderful support system.

     In an earlier article, I wrote on how it is OK to be vulnerable.  I hesitated for a long time to put anything that showed “weakness” or ‘sadness’ on Facebook.  I certainly am not like some people who try to present the perfect façade of their lives, but I do not want to be a “downer” either.  I would stick to pictures of my vacation spots and my hearing ear dog.  She is very cute (yes I am prejudiced) and often gets over 100 hits.  I told my veterinarian I am lucky to get 30 but she is cuter than I am!

     This time, however, I was despondent.  I was suffering from a stubborn upper respiratory infection I couldn’t get rid of.  I was hurting and sick from the chemo.  My medical bills were mounting rapidly.  I was depressed with the gloomy winter weather in Ohio.

     I simply got on Facebook and asked for thoughts and prayers.  I was overwhelmed with over 100 hits and dozens of supportive comments including some thank you's for “being real.”  I realized then that while people do not want gloom and doom all the time they want the chance to be “human.”

     I started putting all, my articles from Cure  on Facebook and the response has been gratifying.  I discovered that not only were people diagnosed with cancer responding, but some with other problems found the articles helpful and inspiring.  I have a faithful following of readers to constantly encourage me. 

     The responses have gone even further. Cure readers began to friend me and I am messaging and chatting with them online.  Some of them are thousands of miles away.  As a result of my postings, some of the articles have been reposted in oncology nurses websites; essential oils websites, and a hearing aid company. This is the gift that keeps on giving.

   Through Cure, I also have found out about other support groups like the Aplastic Anemia and Myelodysplastic Syndrome  International Foundation. (AAMDSIF)  I am presently sharing information and articles with them.

     Some people have sent me hand written letters and thanked me for my encouragement.  This all never would have happened without social media.

     I spend much more time on Facebook now, and no longer consider it a “waste of time.” I keep in touch with other cancer survivors, my former students I taught in college, and people I worked with.  I share in their joys and sorrows.  I got a ton of support this summer after my hearing ear dog had a nasty elbow surgery for arthritis. And yes – people support me through the tough chemo days.

     Therefore, for my comrades who are battling any disease like cancer, social media can be a lifeline.  Especially on those days when you feel too exhausted to go out, or am afraid of getting an infection because your immune system is so repressed. 

So if you feel alone, remember that social media can be a dark web- or your best friend.You can make it one of your biggest supports.I never dreamed I would be so happy that I did!

A DOG’S (AND CANCER SURVIVOR’S) PURPOSE TOO!

I am sure many of you have either read the book or seen the movie “A Dog’s Purpose.”  I find this story especially fascinating because I have a service dog whose purpose has been to be my ears for ten years.

     I truly believe that anyone – cancer survivor or not – needs a purpose in life.  People who have a reason to live survive longer, whether they have cancer or not. I have learned so many things from my wonderful service dog named Sita.

     Sita is a gorgeous yellow lab mix. The most mesmerizing part of her is her amber eyes.  My Mother always said you look in those eyes and you knew she had a soul.  They are tender, bottom less and gentle.

     When Sita and I were partnered a decade ago, we bonded immediately.  I looked into those soulful eyes and was smitten. The agency I received Sita from said they wished every dog and human bonded as quickly as we did.

     As a hearing ear dog, Sita alerts me to any noise that might be different or dangerous by nudging me which we call a “bump.”  Sirens, fire alarms, telephones and doorbells are all sounds she was trained to bump me for.  She wasn’t taught to let me know when people were approaching me, but after witnessing my startled little jump after people came up behind me, she started nudging  me every time.  Once, she even alerted me in a parking lot when the car next to me had the motor running.  It would have backed up and hit both of us without her sharp ears to tell me to get us out of the way.

     Sita and I have traveled all over the country for both business and pleasure.  She is a wonderful flyer, and the attendants tell me she is better behaved than some humans.

     This year she developed arthritis and a serious limp.  After water therapy, laser therapy, shots and other treatments, an orthopedic veterinarian figured out what was wrong.  He did surgery and discovered the cartilage had actually fragmented, causing her serious pain.  She was so stoic that she walked long distances with me because it was her job and hurting with every step.  She never let me know.

     When I questioned the veterinarian about doing a surgery on a 13 year old dog, he reminded me she was in good health otherwise.  She is still limping, but much better and doesn’t appear to be in pain.  If only our canines could talk! 

     My purpose has been to take care of her after she took care of me for 10 long years!  We had to be separated several weeks because of the steps to my apartment. After the surgery, she was caged during the day at the veterinarian, and went home with a staff member at night.  Her tail stopped wagging, her eyes became dull and she no longer did a little dance when she saw people she loved.  It just about killed both of us.

     Finally, we were together again. I could do physical therapy and take care of her so everything changed for the better.  The sparkle returned to her eyes, the joy came back in her step and the tail never stops wagging!
     We do not fly anywhere now and I limit some of the walking she does.  But she is just happy to be working again.  I think this book and movie about a dog’s purpose hit a nerve with the general population for a reason. We humans can relate to that purpose.  We hear about people with cancer who live for a longer time and about unexplained miracles.

     The famous philosopher Nietzsche said those who have a WHY to live find a HOW.  If we would question the people who have beaten the odds, I would bet they have a reason, or several of them to live.  Maybe it is family, friends, job, volunteer efforts, social causes, pets - I could go on and on.

     Both my veterinarian and I are convinced that a purpose is what kept my dog in such good shape and healthy other than the arthritis.  Through the dark days of my chemo every month, it is my friends, my family, my church, my writing, and yes, Sita, who gave me a reason to love – a purpose.

Why don’t you write down your purposes today? You just might live a little longer – and so will your dog!

THE INTERNET CAN BE YOUR BEST FRIEND IF YOU HAVE CANCER

After I was initially diagnosed with Myelodysplastic Syndrome, I did what many people do.  I perused the Internet for hours. The more I read the more confused and depressed I became.  There are between 5 – 7different types of MDS and the average life span ranges from living two months to 10 years.  I did find my particular kind (l have the 5q syndrome) is one where cancer survivors usually live the longest.  Even more confusing was that some articles called it cancer, and others called it a failure of the bone marrow to make healthy cells.   Now MDS is considered a type of blood cancer because it was started by a single cell mutation.

     The point I want to make is that I finally stopped reading everything I could get my hands on.  I needed the initial immersion, but I was getting so depressed I was making my diagnosis worse.  I decided to stop researching, which I have a tendency to do because I was a librarian for 19 years.  I also have a PhD and dissertation under my belt.  I needed now to learn to cope with my new normal.

     I rarely research now unless I am on a new medicine.  But I would like to offer some tips to help other people overwhelmed by all the information out there.

     It is vitally important to research any new chemo or treatment.  I was put on an oral medicine, Revlimid.  I checked all the side effects and every month when I received my medication, the nurse had to recite them to me before receiving it because it was a fairly new medication.   But no one mentioned hearing loss.  After my hearing went from severe to profound, I researched and discovered since Revlimid is a derivative of Thalidomide, it is considered an ototoxic drug meaning poison to the ears. 

     Another time to use the Internet wisely is if you are suffering new symptoms.  I began to have terrible stomach pains that kept me awake at night.  I was becoming nauseous when I ate and decided something was wrong.  I mentioned it to my oncologist who immediately refereed time to a gastroenterologist.  After an endoscopy I was diagnosed with esophagitis with multiple ulcerations.  Medication keeps this under control. When I looked up the Vidaza chemo I was on, this was listed as one of the side effects.

     Later on, I suffered muscle aches and again the Internet was my friend. This is another side effect from the Vidaza.  My doctor confirmed this and prescribed over the counter mediation.

     We need to be informed consumers.  It is difficult not to be scared by reading all about the side effects, estimated amounts of time to live and other people’s experiences.  However, there comes a point we get more and more frightened.  The Internet outlines averages for information like life span estimates.

     Remember that average means half of the population is above and the other half below. Every single patient is different. YOU ARE UNIQUE.  Survival rates depend on general health, age, when diagnosed and several other factors.  An example is when I went to my family doctor and voiced my fears about my longevity.  He had known me for over 20 years at that time.  He reminded me that both of my parents lived to very healthy old ages and so this average most likely didn’t apply to me.  In other words, no one really knows.

     Also make sure that you are reading reliable sources.  Mayo Clinic, Cancer Center of America, American Cancer Association, Cleveland Clinic, Anderson Medical Center and Cure are all reliable.  There are many others but this is just a few. You can check with your doctor for a list.  Anecdotal information is just that – anecdotal and someone’s story.  When I taught college, I always warned my students to not just research self reports, but professional websites. 

     I also find the websites helpful for information on bone marrow biopsies, procedures and tests.  I feel it is better to know what is happening.

     I do have mixed emotions about looking up the side effects of drugs and chemo.  The list seems a mile long and scary.  Remember that the drug companies are listing these as possible, and no one experiences all of them.  However, now that I have been deafened by chemo, I do check that possible side effect with new medications. 

     ASK YOUR DOCTOR – I cannot stress this enough.  After I found that the gastrointestinal problems may be correlated, I talked to her.  Most oncologists are constantly researching information and may even make a call for you to places like National Institute of Health.

     I have also discovered another wonderful resource is nurses.  I see them five times a month and chat with them while getting my chemo.  Remember that they work with chemo patients all day, five days a week and spend a lot of time with cancer patients.  Often patients will confide in the nurses more than the doctors, because of the time factor.  We all know how busy doctors are and do not want to bother them.  It is the nurses who inform me about side effects and what they have learned from other patients.  Some of them have even given me encouraging news about new clinical trials.  I then can ask my doctor.

The Internet can be your best friend if used judiciously.Or it can be your worst enemy and scare you if you don’t.Be careful when you surf and know that you are unique and not like anyone else.You will learn a wealth of information and it can make you healthier.

MY SERVICE DOG'S JOURNEY WITH MY CANCER

I lead my hearing ear dog, Sita, back to the room where I get the chemo. A staff person greets me as I slip off the orange vest with the forbidding words, “Do not pet.” Sita follows the person down the hall with tail wagging and heads to the drawer that has the treats.

I shut the door where I receive two shots in either the arms or stomach from the chemo nurse. There is a knock on the door and after opening it, I see my beautiful yellow lab with her gorgeous amber eyes, perky soft ears and cold pink nose eagerly greeting me. I put the vest back on and we walk out together. We will follow this routine for four more days this week.

I received Sita a year before my mother died. She was trained in the Ohio prison program to be a hearing ear dog. She alerts me by “bumping” or nudging me with her nose whenever the telephone rings, someone approaches me or any other unexpected noise. She is my ears, my companion, soul mate and friend.

We have had some struggles along the way. Sita and I visited my mother in assisted living daily right after I brought her home. A year later, Mom died a horrible and painful death with me sobbing at her side and Sita standing next to me. Eighteen months after that, I was diagnosed with cancer. My faithful buddy was with me when I received the devastating news and accompanied me to my follow up visits to the oncologist. I was on oral chemo for six years and visited the doctor monthly. This is where the whole routine started.

The staff at the cancer center is all fantastic and love animals. They brought treats for Sita and told me they looked for my name a couple of days before my visits. They explained that she always made them feel better. I know they have a rough job, so was happy to oblige them. They eagerly anticipated her being taken out of vest, sitting up and chomping happily on her bones.

We had discovered Sita had another talent besides being a service dog. The place that trained her agreed with me she would have been a wonderful therapy dog. She was chosen to be one of the elite, since only one of 100 dogs makes it to the finish line as a service dog. Her sweet and laid back disposition, plus her soft-looking face charms people who are ill. The staff soon began taking her in to see the patients receiving chemo, and the smile on their faces filled the room. She knows how to be a therapy dog for several minutes. But, as soon as the vest went back on she changes. Sita walks out and struts with me down the hallway ready to be working again.

WITH CANCER THERE IS ALWAYS HOPE!

One of my favorite books is Man’s Search for Meaning by Victor Frankl.  This heart retching story is about a psychiatrist who was imprisoned in four terrible Nazi camps during the war.  He used his time there to observe the other prisoners and what he found surprised him.

     As the world knows, over six million Jews died in the concentration camps.  Many of them did not die from being gassed and shot, but from diseases, starvation and the filthy conditions of the camps.

     What intrigued Frankl was the fact the survivors were not always the fittest or strongest.  He realized the people who survived had only one thing in common. Each survivor he talked to had some kind of purpose in life and a reason to live.  The purpose was different for each prisoner.  It may be a living relative, a home to return to, or a career that the person loved.  Frankl's own purpose was clear to him.  He decided to write a book when the war was over.  He came close to giving up when the Nazis stole his notes.  He wrestled with how he could go on until he realized the Nazi’s could not take away his mind.  He had the book in his head.  The author wrote the book in nine days after he was released from the camps!!

     A quote that Frankl uses in his book was by the famous philosopher Nietzsche.  “He who has a WHY to live for can bear with almost any HOW.”

     Think about this.  Hope and a reason for being was the sole factor in people surviving the worse torture, starvation and humiliation the Nazis could inflict.  Translate this to a cancer survivor.  Hope is the one emotion we can control when a cancer is terminal.  There is always hope for a new clinical trial, a new chemo or a new immune booster.  And if one is really ill and ready to let go, hope remains for relief in the next unknown step.

     It is hope and the “why” that keeps us going.  More than any medicine, radiation, or chemo one thing is even more important. A reason for being, for staying alive, for loving life can be miraculous.  This love can be for a family member, a close friend, a pet or a cause.

In my depressive moods which hit with a vengeance, the ray of hope to get me through is usually a small but important gesture.A phone call from a friend, a card from a family member, my dog putting her face in my lap, or my cat crawling into bed with me all make me feel good.Grab this gesture, seize the day and never give up hope.Try to do the same for others.If one has the WHY the HOW will happen.Never forget that.

DON’T LET YOUR OIL BURN OUT WHEN FIGHTING CANCER

One of the hardest things about having cancer and the resulting treatments is the constant fatigue.  Most of us lead busy lives and are totally unprepared when the tiredness hits us like a ton of brick.

     The problem is learning to sort out what needs to be done now, and what can wait.  Priorities have to be set. We all know that everything seems important when you are too weak to do anything! We ask ourselves what can possibly be postponed until tomorrow.

     I know personally when I worked and went to school and kept an insane schedule, I would go and go and go until I was running on empty.  I always felt there was a little more oil in the lamp until I got sick.  My family doctor would tell me to take it easy, which I did for a day or two. Soon I was back up and running again.

     Cancer isn’t like that.  The fatigue lasts longer.  The chemo and radiation treatments do not make one fatigued for only a day or two, but can last for months.  With my type of cancer, I will be on chemo for the rest of my life.  I can no longer sit around and look at what needs to be done, thinking I can perform some tasks when I am better.

     Time management totally changes when one has cancer.  Before cancer the extra reserve always seemed to be there.  After cancer it isn’t.

     In my humble opinion, the United States puts way too much emphasis on how much we get done in a day.  Pick up any newspaper, look at any article online, or peruse any women’s magazine and see how many times “saving time” in a busy world is mentioned. 

     Save for what?  Many other cultures (and a few in the US) feel that spending time with family and friends is more important than anything else including work.  What a novel thought!

     I no longer try to see how much I can get done in a day.  Some days all I can do is take care of myself.  In other words, do nothing but eat and sleep.  There is no reserve in the tank.  I try not to plan too much in one day for that same reason.  I may be in bed for the next several days if I overdo.

     Someone once told me that the body is like an oil lamp.  If we shine our light and try to take care of everyone else without pausing, we burn out.  We need to stop occasionally and replenish the oil.  If we do this, our light can continue to shine and inspire others. 

     I constantly have to remind myself that if I don’t feel good I am no use to anyone else.  If I am too busy, I have no time for friends and family.

     So- renew the oil.  Chill for a day or two.  Instead of fighting the fatigue, make it a “jammie” day.  Wear your pj’s all day and relax!  You are not wasting time, but making it so you can do more.  The world got along without you before you were born and it will be OK now!

Reorganize your thinking, figure out your priorities, and replenish your oil.You will be healthier and happier for it. Meanwhile, your light shines so you can help others get through the darkness!And this is really what life is all about.

MY CANCER FAMILY

One of the bonuses I never expected as a cancer survivor was to meet and find a whole new family.

     I am single and most of my family is scattered all over the country.  However, I am fortunate to be a part of several other families, who are my support group.  They are more than casual friends I go to dinner with. They are people I depend on to be there when I need them.  I laugh, cry, socialize and spend holidays with them. Because of my friends I am never alone on a holiday.

     Some of them are people I shared a career with.  Others are college friends I lived with in the dormitory.   I meet with friends in a book club every month, where I share my innate love of books and reading.  I have deaf friends who have supported me through losing my hearing.

     My church family is incredible and I never enter the building without feeling their prayers, support and warm embrace.

     I even have a support group with my dog friends.  It was my veterinarian and her staff who took care of my dog after surgery, because I had steps at home and she could not be with me.  I have other friends who bring food for me after chemo, when I am too tired to cook or go out.  It is my friends who have accompanied me to doctor appointments and helped me through good and bad times. I have neighbors who check on me and help me with groceries and packages when I am too weak to carry them. 

      I have another wonderful and precious support group I never expected.  When I was first diagnosed with cancer, my oncologist was very cold and unemotional.  Her nurse was even worse and obviously didn’t care about the patients at all.  I quickly switched to another warm and supportive oncologist. She is one of those rare people who take the journey along with every one of her patients.  I asked her one time how she kept from burning out.  Her answer was incredible as she explained she had a higher power who gave her that strength and caring.  I couldn’t be on this difficult cancer journey without her, and would have given up a long time ago.  Her staff is all special too.  The people at the front desk are always encouraging and friendly under the barrage of patients they see daily. Her nurses follow me every day of my chemo for five days straight, and help me if I do not feel well.  They are anxious after each one of my bone marrows to see if the cancer is in remission or not.

      The vena puncture people are always gentle, and know me by name.  The other patients in the waiting room have a story they want to share.  The head nurse is a warm and caring person and always takes the time to stop and say hello.  I often joke with her that I have never seen her sit down!

     I am on a Patient Advisory Council for the hospital where I am receiving treatment.  I have met with the bravest and most inspirational people in the world.  These wonderful volunteers have fought cancer for years, and still take their precious time and energy to be on the committee.  The hospital is in the middle of planning an exciting new cancer center, and truly wants the input of the patients.   Through this committee, I have met several people from the administration. I am impressed by all the time and effort they put into giving patients the very best of care.  They are there from early morning to late at night.

  I belong to a local YMCA which sponsors the Live Strong program .I have met some fabulous people there, including  my trainer who works with people recovering from chemo and has become a good friend. The two nutritionists are also special and have taught me a lot about reading food labels and diets.   As a result of this type of care, I try to reach out and encourage others who have cancer.  I enjoy meeting with other survivors in the group and hearing their stories too. We all support each other through good times and bad.

     Through my articles in Cure Today I have met even more cancer survivors and have become Facebook friends with courageous survivors all over the country.

I felt so alone when I found out I have cancer.I am convinced that the people who work with cancer survivors feel it is not a job - but a way of life.They tell me constantly that I am family to them.Otherwise how could I get through this?It is family who help each other though good and bad times and they really do!

WHAT NOBODY TOLD ME ABOUT CANCER

Cancer – “the big C.” Everyone dreads getting this disease, and all of us have lost loved ones from it. We know, instinctively, that if we are unfortunate enough to be diagnosed, life will never be the same. What I was unprepared for was how much cancer changed my life.

I was diagnosed six years ago and feel like I fell down a rabbit hole. I am still circling around and around trying to climb back up. I always thought cancer was treated by radiation, surgery or chemo. I have myelodysplastic syndrome, a cancer of the bone marrow. The only way to treat blood cancers of this type is with chemo, and the only way to know if it is working is with bone marrow biopsies. No one can ever be prepared for the shock waves when the doctor tells you it is cancer, and gives you a finite amount of time to live.

I found a wonderful and compassionate doctor, and would not get through it without her. I believed many myths about treatments. For six years, I was on an oral chemo that doctors called a “miracle drug.” I naively believed that an oral chemo wouldn’t have the nasty side effects that other types of chemo would. That was until I discovered this chemo was ototoxic, meaning it caused permanent damage to my hearing. It was a thalidomide drug and caused my severe hearing loss to become profound. I suffered from uncontrollable diarrhea and a fatigue that only someone with a chronic illness could understand. This is a malaise, where I would feel fine and then suddenly need to go home and collapse.

Meanwhile, the medical bills devastated my savings. I was forced to quit two jobs I loved, and with each bone marrow biopsy, I had fear of the results. My health worsened and I needed a more invasive chemo with 10 shots for five days every month, six in the stomach and four in the arms. I’f lay in my bed with ice packs on my tummy praying to feel better.

But there were other things no one ever told me about cancer - wonderful things. I immediately found out how much my family and friends do care. They have flocked to help me with doctor appointments, bring food, walk my dog and just be there. I found there is no shame in asking for help. I am extremely independent, and this has been a hard lesson for a person who has lived alone for over 40 years. People want to help me, and know I would do the same for them. I thank God every day for the fantastic doctors, nurses and support staff who help me through my emotional ups and downs. They are there when the physical pain is almost too much to bear. I call them my “angels without wings.” I have a hearing ear dog by my side who teaches me life lessons everyday, and I am writing a book about her! She seizes each day as an adventure, forgets the past bad times and doesn’t worry about the future! I have joined a warm and caring church congregation of people who circle me with love, prayers, cards and best wishes every day. I have begun to go to nutrition classes, continued my exercise classes and learned to take better care of myself, since this is the only body I have. I have to parcel my energy now. I no longer waste time on people and tasks that I do not like, because life is too short. I am doing the things I can and am enjoying every minute. Being unprepared has helped me be prepared.