CANCER CHANGES EVERYTHING – AND NOTHING

I was watching a television show I have mentioned in some other articles.  The show “New Amsterdam” features a medical director of a hospital who has cancer. He talks honestly about his cancer journey.  One of the statements he made to a colleague was, “Cancer changes everything – and nothing.”

     I stared at the screen and knew exactly what he meant.  The day we are diagnosed the world stops.  Everything is in slow motion.  We watch our world change more than we ever thought possible.  We go to work, we brush our teeth, and we take a shower like before.  We wait what seems like forever for tests to get completed and treatment plans drawn up while we go on like robots.

     Inside, we are screaming, I am sick, I have cancer, and I may die. What will happen with chemo and surgery and radiation? Will I lose my hair, will I throw up, and will I be bedridden? These thoughts pelt us like hail hitting on a car windshield.  Everything has changed for us.

     When we go to the waiting room for our treatments or appointments with our doctors, we look around and watch others going through the same emotions.  Some have coverings on their bald heads.  Others are softly crying.  Others are talking to their family with sad expressions on their faces. Still others have shunts in their arms or chests.  We wonder if we look like everyone else in the room.  Some people look normal, but maybe they are relatives or not yet diagnosed.

     Stepping outside of the hospital world is different.  People are driving/ working/walking/laughing/talking/watching their kids and doing what they do every single day.  Nothing has changed.   Initially, it seems a bit unfair.  If our world has turned upside down and inside out and topsy turvy - why is life still going on for others?  Yet, it is a relief as we realize we may join that world again after the treatments.

     I will go one step further and say the death of a loved one, a horrible divorce, a bankruptcy, a storm that destroys our house also can leave us shaken and not knowing how anyone can go on.

     This doctor, although fictitious, has hit the nail on the head.  Cancer changes everything.  Our whole worldview is different and our bodies will never be the same again.  We know how vulnerable we are and are more grateful for the little things.

     Yet it changes nothing.  The sun comes up in the morning and sets in the evening.  The seasons change and we wear different clothing to accommodate the weather.  The earth is still rotating on its axis.  Life does go on and we can find comfort in that.

THE GIFT OF WINTER FOR CANCER SURVIVORS

I have a wonderful friend who does Reiki on me.  She is very special, and a spiritual person.  We were talking about winter coming up and I mentioned I was behind in my writing.  “Winter is such a gift” She said. “People don’t realize they can stay inside and get things done they don’t in the summer.”

     I looked at her in amazement as I realized how right she was.  I have written another article on winter for Cure titled “On Canadians, the cold and cancer “about how the people there have parties and get together to get through the long hard months of ice and snow.

    I typically don’t like winter.  I have a small three season room that I live in 9 months of the year.  I soak in the sunshine and enjoy my dancing solar figures.  I love to gaze up at the stars at night, since I have three sides of complete windows to look out. I am always sad when my television comes inside and the air conditioner is turned off. I love being outside with my fourteen year old service dog talking to my neighbors while she rolls in the grass like a young puppy!  She and I know every single outdoor patio to eat in the entire county.

     Winter brings all of this to an abrupt end.  It is dark at 5 PM.  I hate worrying about sliding around on icy roads and cancelling appointments. I cannot go out in the cold three season room and I seldom see my neighbors. The patios are all shut up with no one eating outside.

     But my friend is right.  There is a lot to be said for some advantages of winter. Unfortunately, I don’t have a fireplace, but I enjoy curling up on my loveseat and turning off the overhead lights when watching televisions.  I have a beautiful handmade wooden tree and I change the decorations for each season.  It is lighted up and features the blue snowflakes and ornaments, making my little apartment cozy and fun.  I have flickering candles all over and it feels comfortable.

     I do get more writing and tasks done in the cold months. It is much easier to sit in front of my computer to write when it is dark. Sometimes I go to the nearest coffee shop and write by the hour.  Did you know that J.K. Rowling of the famous Harry Potter series wrote her books at a local café? If she can do it I can!  I love going to bed with my electric blanket with my cat curled up on my feet.  It isn’t always a bad thing to cancel appointments or dinner with friends and just stay inside.  On cold mornings I like to make hot chocolate and look outside to see the snow falling.  I realize of course I can do that being retired.   I do remember when I was working how terrible it was to get up and go to work battling snow and drifts. But it also it was a thrill to get home safe and sound and not go out again.

     Someone once told me there are more authors who live in cold climates than warm ones, and I feel there is a reason door this.  Winter is also a good time to clean out basements, attics and closets.

     I am sick of the darkness and by March am reaching out for the light again.  Knowing spring is coming keeps me going, and realizing the grass comes up again gives me hope for eternal life for all of us.

     Every cancer survivor has gone through dark and terrible winters with chemo treatments, side effects and pain. But when we see these flickering lights which are friends and family, it means the world to us.  We also cherish the light of spring even more – perhaps the end of a treatment or a cure.

     Sometimes with the disease, we enjoy staying home and do not feel like facing anyone. However, often the day comes when we are ready to go out again.  We look back on the winter, marvel at getting through it and absorb spring into every bone in our body with gratitude.

     Winter is a gift that gives us more time to ourselves and that prepares us for the light again.  My wise friend is absolutely right!

 

CANCER SURVIVORS WAIT FOR THE OTHER SHOE TO DROP

“I am waiting for the other shoe to drop,” is a popular expression I have heard many times.  I thought I understood this saying, but I truly didn’t until I was diagnosed with cancer.

     Cancer typically isn’t treated the way I originally thought, which was a straight line from diagnosis to treatment to cure. I’m not sure why I expected this, because life isn’t a straight line.  Events may occur smoothly, and suddenly out of nowhere we are hit with an illness, a death of someone we love, a job loss, the loss of our home from fire or storms, or another catastrophe. 

     It took me many years to discover that eventually everyone has their straight line stopped.  I have friends and family who seemed to lead “charmed” lives until something unexpected happens to turn their world inside out and upside down.

     I know all of this intellectually, but in reality, with an incurable blood cancer, I find myself thinking of this quote.  I try so hard to be positive, but in the back of my mind I am constantly waiting for the other shoe to drop.  For my blood counts to worsen.  For the results of the next bone marrow biopsy to be haywire.  For the chemo with its side effects to be administered, intensified or changed. And for the eventual outcome (unless there is some miracle clinical trial) where I will not ultimately survive.

     I have promised my readers that I will always try to be honest.  In spite of my positive attitude, I find myself waiting way back in the back of my brain for that other shoe to drop.  I am facing another bone marrow biopsy soon and am admittedly nervous.

     However, I have learned something else from my cancer.  I know the other shoe will drop.  It is not a matter of if but when.  A wise friend once told me I couldn’t change my circumstances, but I could change my attitude towards my circumstances.

     This, my friends, is the only thing in life any of us have control over. I can ruin my upcoming holiday season worrying about what the New Year will bring and allow those lingering doubts, which I seldom voice but do think about, to ruin the here and now. If I do this, I can’t enjoy the present with the celebrations, gift giving and precious time with friends and family.

     Or I can tell myself sternly that worrying will not change the outcome, but make everything worse.  I can put off my worries until there is something to actually worry about.  It may very well be the next bone marrow biopsy will show little change and I am free for the next six months to stop being concerned.

     Yes, there are those of us who are cancer survivors and constantly waiting for the other shoe to fall.  But we don’t have to flap around like Chicken Little being scared. We don’t have to look up in the sky watching for the shoe.  We can center ourselves, dig in and enjoy what is happening on the ground.  That is more fun anyway!

A CANCER LESSON FROM A TV SHOW

It is interesting to observe the lessons one can learn from a supposedly recreational television program.  I was watching a new series this year called “New Amsterdam.”  Surprisingly, the show features a medical director of the hospital who has cancer.  He was talking to a Rabbi with cancer faced with what seemed like an impossible decision.  The Rabbi could either go home and live a year with his family doing chemo and radiation; or have a surgery which he had only a 10% chance of surviving due to a bad heart, but he would be cured. He chose the surgery.

     When the doctor asked him why he made the decision he did, the Rabbi’s answer hit me like a ton of bricks.  He replied, “I can either wake up dead or cured, but will no longer be a patient.”

     Later in the show, the doctor decided to have a clinical trial targeting his cancer rather than chemo and radiation in spite of the lesser chance of surviving with the trial.  His oncologist was dismayed, but he told her emphatically, “I don’t want to be a patient – I want to be myself.”

     Cure’s motto now is one I can relate to.  “I am more than a patient.”  It occurred to me after this program that what is bothering me about my incurable blood cancer is that I will be a patient until I draw my last breath.  Other cancer survivors (but not all) come and go from the Cancer Center, but I am there forever.  Honestly, the only thing that keeps me going is the staff and oncologist is so wonderful to me and has become my friends.  In other words – they “get it!”

     Of course, I am a patient at my family doctor’s office, but if I’m not sick I go in twice a year for regular wellness checkups.  This is totally different.  All of us with chronic diseases face the fact we do not have a choice and will be a patient forever.  Cure really hit the nail on the head with that motto.  I am constantly on chemo, have bone marrow biopsies twice a year, and visit the Cancer Center monthly, 

     However, I am more than a patient.  I am very vocal about what I think at the Patient Advisory Council meetings.  I love to talk to my doctor about my writing, my travels and my family. I am sure she realizes the psychological benefit of talking to her patients about their lives and that is why she is so good at what she does. I write articles explaining I do many other things with my life, instead of just being a patient.

     No matter what treatments I am receiving, no matter whether I am cured for good, I am not “just” another patient. I may have to fight a little harder for the status of being my own person.  However, it behooves all of us to remember that “I am more than a patient – I am ME!!! “   

    

WHY AM I ALWAYS SO TIRED – A LOOK INTO CANCER FATIGUE

Fatigue is an often-mentioned side effect from cancer and its various treatments. It is not the type of fatigue where a good night’s sleep will “cure” us. It just seems to go on and on.

A standard dictionary definition of fatigue, according to Medicine, is, “extreme tiredness resulting from mental or physical exertion or illness.” Fatigue can also be acute and come on suddenly or be chronic and persistent. This describes what many of us experience.

There are several names for fatigue in cancer patients, which include cancer fatigue, cancer-related fatigue and cancer treatment-related fatigue. Whatever it is called, I think most cancer survivors will agree that it sucks!

Cancer fatigue has made a huge change in my life. I researched various articles from the National Cancer Institute, Mayo Clinic and Cancer Network: Oncology Nursing to find out more information. As I suspected, this insidious and lingering side effect is under-reported, under-diagnosed and under-treated. The percentage of persons suffering from fatigue in breast cancer survivors may be as high as 30 percent and last as long as five years after treatment, according to the journal Oncology.

The question I have is why, and now the research is explaining some reasons. The changes to your body by the cancer can lead to fatigue. Certain cancers can weaken muscles, damage organs and alter hormones. Some cancers release proteins called cytokines which causes fatigue. All cancer treatments, including chemo, radiation, surgery, bone marrow transplants and biological destroy healthy and damaged tissue, according to the Mayo Clinic.

Obviously, there are other side effects from treatments such as nausea, vomiting and diarrhea that can also cause tiredness. Think what an episode of the flu or an intestinal bug does to our body, then imagine what survivors go through periodically. Some cancers can even cause anemia, which is bound to make the body weak.

In addition to all of the above causes, pain, lack of sleep, infections, hormonal changes and other factors increase the fatigue even more. Immunotherapy can leave flu-type symptoms, while surgery is always an assault to the body. It also makes sense that the buildup of toxic substances left in the body after treatment contributes to feeling weak. Being less active is a huge factor.

One of the most important elements of fatigue in cancer is nutrition. In cancer survivors, the body may not be able to absorb the nutrients from the food as a result of cancer, treatment or both. The patient may not feel like eating because of nausea and diarrhea. The body needs more energy because of infections and fever, which many survivors suffer.

One way to battle fatigue is to have your doctor refer you to a nutritionist. I am fortunate enough to be at a YMCA which has a LIVESTRONG program, and have received tremendous advice from two nutritionists. One of the first foods recommended to me was Kefir for my intense diarrhea. The nutritionist relates a story about a colon cancer survivor who had gone through more than a dozen medications from his doctors to control the diarrhea and nothing worked. He decided to eat the Kefir, which immediately helped him. It is available in the yogurt department of most grocery stores. I have learned to make smoothies, to try different brands of foods and to read labels from these classes.

The other major solution to fatigue is hyper kinetics or exercise! Regular and moderate exercise improves one’s capacity to move, increases muscle strength and decreases fatigue. LIVESTRONGhelps with special exercises for persons recovering from cancer treatments. What survivors need to realize is we do not need to run a marathon. Even an exercise like simple chair yoga helps with fatigue.

Finally, the cancer survivor needs to learn how to pace oneself and not over exert. A number of articles have addressed this, but what I find most interesting is one from the National Cancer Institute. Research has discovered that during and after cancer treatment, patients cannot stay focused over long periods of time and have a hard time remembering. There is even a name for it – attention fatigue!

The answer to helping with this type of fatigue is to take part in restful activities, and spend time outdoors. Now I know that all that time I spend watching television and reading are good for me!

In summary, fatigue is a problem that doesn’t go away. However, we can try to make it better. Talk to your oncology nurse, navigator, doctor and people on your medical team and do not just believe that fatigue is inevitable. All of us need to have some control, and the more control we have over our bodies, the better we feel!

A CANCER LESSON FROM A TV SHOW

It is interesting to observe the lessons one can learn from a supposedly recreational television program.  I was watching a new series this year called “New Amsterdam.”  Surprisingly, the show features a medical director of the hospital who has cancer.  He was talking to a Rabbi with cancer faced with what seemed like an impossible decision.  The Rabbi could either go home and live a year with his family doing chemo and radiation; or have a surgery which he had only a 10% chance of surviving due to a bad heart, but he would be cured. He chose the surgery.

     When the doctor asked him why he made the decision he did, the Rabbi’s answer hit me like a ton of bricks.  He replied, “I can either wake up dead or cured, but will no longer be a patient.”

     Later in the show, the doctor decided to have a clinical trial targeting his cancer rather than chemo and radiation in spite of the lesser chance of surviving with the trial.  His oncologist was dismayed, but he told her emphatically, “I don’t want to be a patient – I want to be myself.”

     Cure’s motto now is one I can relate to.  “I am more than a patient.”  It occurred to me after this program that what is bothering me about my incurable blood cancer is that I will be a patient until I draw my last breath.  Other cancer survivors (but not all) come and go from the Cancer Center, but I am there forever.  Honestly, the only thing that keeps me going is the staff and oncologist is so wonderful to me and has become my friends.  In other words – they “get it!”

     Of course, I am a patient at my family doctor’s office, but if I’m not sick I go in twice a year for regular wellness checkups.  This is totally different.  All of us with chronic diseases face the fact we do not have a choice and will be a patient forever.  Cure really hit the nail on the head with that motto.  I am constantly on chemo, have bone marrow biopsies twice a year, and visit the Cancer Center monthly, 

     However, I am more than a patient.  I am very vocal about what I think at the Patient Advisory Council meetings.  I love to talk to my doctor about my writing, my travels and my family. I am sure she realizes the psychological benefit of talking to her patients about their lives and that is why she is so good at what she does. I write articles explaining I do many other things with my life, instead of just being a patient.

     No matter what treatments I am receiving, no matter whether I am cured for good, I am not “just” another patient. I may have to fight a little harder for the status of being my own person.  However, it behooves all of us to remember that “I am more than a patient – I am ME!!! “   

    

STILL LIFE AND CANCER- TEACHINGS FROM A MYSTERY NOVEL

A favorite mystery author for many readers is Louise Penny and her featured detective, Armand Gamache.  I have several friends and relatives who kept recommending these books.  I decided to read the first one in the series when I visited Montreal, where the fictional characters live. It is titled Still Life, and I am hooked!

     As a writer, one of the aspects that fascinate me is how the title of any book is chosen.  In a special scene, Detective Gamache is talking to a psychologist recently retired after 25 years as a therapist.  She explains that she often felt many people actually enjoy their problems and use them as an excuse for not growing up and moving on.  She coined the phrase “still life” to describe how they are always waiting for someone to save them.

     She continues on to say that these people don’t look to themselves for solutions, but to others so they prohibit any change.  Gamache theorizes that change is inevitable for all of us and we should not be afraid.

     What a profound philosophy of life coming from a mystery title! The more I pondered over this book, the more I realized how “still life” can apply to cancer survivors like me.

     Cancer patients are hit seemingly out of nowhere with a diagnosis that is scary.  The mere word “cancer” is terrifying, though many kinds of cancer are treatable.  Shaken out of our comfort zone, we no longer have a still life.  Sure, we can blame others for many life crises such as the way our parents raised us, the terrible boss who causes so many problems, or the abusive partner who makes our live miserable.

     But cancer is a different animal.  We may try to blame genetics; the environment; undue stress or an unknown spirit in the universe, and initially, many of us may do that.  We can also turn to blaming our doctors for not finding the cancer sooner or doing the wrong treatments.  The chemo makes us so sick we blame the pharmaceutical companies for the side effects.  On and on it goes.

     But - ultimately the solution is in us.  Sometimes we look at our own lifestyle and chide ourselves for drinking too much, smoking too much, eating the wrong foods or lack of exercise.

     I will be forever grateful to my oncologist for telling me there was nothing I did to cause this cancer.  We all know that some people can abuse their body and be perfectly healthy, while others do everything right and still get sick.   It often boils down to one single cell that mutated.  However, I certainly improved my lifestyle realizing it could help me to live longer and better!

     We cancer survivors are a hearty bunch.  Once we get past the initial shock, we look inside ourselves for the solution to cope with the changes in our lives. We reach out to others, join support groups, encourage people personally and on Facebook.  I adore the many wonderful people I have met on my journey. I belong to a Patient Advisory Council at my hospital, and have met the bravest people I know.  I also love the people in the Livestrong program at the YMCA and feel privileged to have them in my life.   One thing we all have in common is we can’t live still lives.  We are forced to change, examine ourselves and our lifestyles, and develop our own solutions.  Cancer is a terrible illness to have, but it can teach us to move on and that is an invaluable lesson.

LIGHT SHINES THROUGH THE CRACKS OF CANCER

“Ring the bells that still may ring,

Forget your perfect offering,

There’s a crack in everything,

That’s how the light gets in”

     I would not expect a crime mystery to have a verse like this which was written by Leonard Cohen.  However, it is highlighted in the famous book, A Fatal Grace, by Louise Penny.

     In her books, Penny admits that while her novels appear to be traditional crime stories, she wants them to be more than that.  She expects them to teach about life, death, peace, choices and fight for freedom among a few lessons.

     In this particular novel, the famous detective, Armand Gamache, is admiring the paintings of a good friend.  The artist points out that in every piece she paints, there is a tiny crack showcasing imperfection and impermanence. She makes sure that this crack is present in every single painting.

     Gamache, being a detective, noticed this feature immediately and observed that the crack lets the light in and radiates in all of her work.

     Every one of us has a persona we present to the public. We want others to think of us as being kind and good, strong and not vulnerable, organized and energetic.  Just witness the posts on any social media and you will see this. However, each of us knows where our faults are.  It took years for me to admit my depression and very few people know I was once involved in intense counseling, fighting for my black mood to lift.

     We all have our cracks and cancer provides a huge one.  Perhaps for the first time ever, we present (and look) weak, vulnerable, sick and needing to ask others for help.  One of the first articles I ever wrote for Cure was titled “It’s OK to be vulnerable.”  When I admitted this vulnerability on Facebook, I was overwhelmed not only with the support I received, but people thanking me for “being real.”  I have tried to be real ever since.

     This important and innocent appearing novel teaches us everyone has a crack in our lives, but something even more important happens.  We begin to see the light beyond the crack. I compare it to many days of rain which happens periodically in Northeast Ohio, where I live.  I tend to miss the sun, yet I know it is back of the rain.  When the sun finally appears, I embrace it.  I do not enjoy flying like I used to, because it has become such a hassle.  However, I am still thrilled as a plane climbs above the stormy clouds to the sun and I watch the rain below.  This is a feature of nature that will always keep me in awe.

     When my most serious “crack” of cancer appeared, I certainly did not see the light. Eventually, as the crack began to widen, shining rays began to appear.  I made new friends, I found goodness in a lot of people, and I received support as I tried to help others.  My writing exploded due to my wonderful oncologist’s encouragement. Most of all, I learned to let the little things we call “small stuff” go and appreciate life.  The wisdom of getting older teaches many of us to let minor hindrances not bother us as much. However, cancer forced me to learn more quickly.

     The artist deliberately placed cracks in her artwork. Gamache observed how this lets in the light.  Sometimes the crack even radiates. None of us would ever want to put a chronic disease into our lives, and did not choose it.  However, a terrible disease like cancer can open up a whole new world of light and radiance as we learn to embrace both it and each other!

DON’T COMPLAIN ABOUT OLD AGE TO A CANCER SURVIVOR

My father used to have much wonderful expression, and used them liberally at just the right time.  The minister even mentioned them at his Memorial Service.  Some of them I wouldn’t dare publish, but others are funny and I find myself repeating them.

     One of his favorites if someone was complaining about life in general or not feeling well was, “Well it is better than the alternative!” That comment usually shut people up from feeling sorry for them, including me.  The longer we can fend off death, the better we are.

     I know many people who are insulted and afraid to “get old.”  I was frankly upset myself when one of my college students called me an elderly woman. She could not possibly be talking about me could she?  I was sputtering and stammering about this, when my siblings and cousins quickly informed me that indeed I am elderly. I became even more defensive until I remembered that they are all older than me!

     However, I never had a “thing” about age.  I agree wholeheartedly with my cousin, who states she is proud of every year.  I have never lied about it or spent money on expensive creams to make me look younger.  I was actually pretty graceful about it compared to some people I know.

     But cancer changed me. I now resent people complaining about getting old.  I have just reached the benchmark of how long I was predicted to live when I was first diagnosed.  I love my life and wish to live as long as I can be reasonably healthy.

     Please don’t say to anyone with cancer how you hate it when you are reminded about getting old.  Now, when people complain I tell them I only hope to get older. When I visit doctors for checkups or am around young people I admit I am old.  But it isn’t an insult or anything to conceal.  Rather it is a great privilege.

     Those of us who are cancer survivors know this.  Every day, every hour, every minute, every second counts.  We are filled with gratitude for one more year.  It is a privilege many people do not have, and we try to make the most of it!

HEALTH MONITORING AFTER CANCER-SHOULD WE LET STUFF GO?

I was receiving a stern and deserved lecture from my eye doctor.  “It’s been too long since you have been here.”

  “Oh two years,” I replied.  Since I waited five years before that appointment, I was actually proud of myself.

     “No- it has been three and a half years,” he corrected me.  Time does fly when you are having fun and I must have been having a lot of it! I deserved this lecture and knew it.  I have a family history of glaucoma and the beginning of cataracts.  I have some vision insurance and live down the street from the office, so that is not an excuse either.  The main reason I went in today was because I had read that chemo causes cataracts.  Since I had been on various chemos for eight years, I wanted to check it out.

     I don’t know about other cancer survivors, but I do find it hard to balance all my medical appointments.  I never miss chemo and faithfully go for my bone marrow biopsy every six months.  I immediately let my doctor know if I have an infection, so I can be put on an antibiotic.  I faithfully see my family practitioner and dentist twice a year. I have my hearing checked often because the chemo has affected that too.  I also have to go in regularly to have my hearing aids taken care of. The main reason for this is because without them I just cannot hear!

     But when it comes to routine eye checkups and other appointments not directly related to my cancer, I become lax. I think because so many of my appointments focus on my blood cancer, I just find it difficult to find time for the other things.  I try not to worry constantly about my health, and every time I am in any doctor’s office that ugly beast reminding me that I have a chronic disease rears its head. It is not logical for me to wait so long between appointments, since I am deafened already and need my vision more than ever.  It is an emotional reaction from me.

     I do think about cancer and all its side effects.  I try not to over focus, and  think that every single twinge or part of my body is caused by the cancer. I hate picking up the phone and making more appointments.  I find sitting in waiting rooms is annoying, so I don’t always do what I should.

     I did meekly tell the eye doctor I had been going in for chemo 5 days a month for awhile, but even that was lame since I stopped over a year ago.  I should have been to him sooner – period.

     When I was working, I was usually given positive evaluations for being organized.  So I do not even have this excuse.  Although some people would think my apartment is not organized, I do know where everything is most of the time!

     I am not making excuses.  I am just tired of medical appointments and let it go.  I deserved the lecture I know.  I need to be more balanced in my health choices.  But – I still will not make an excuse about trying not to be over focused or hyper vigilant about my medical needs.  I need to take a break sometimes, and go watch some television or go out with my friends and family.  That is a balance too!