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!

 

    

DOES CANCER BECOME WHO WE ARE?

By Jane Biehl PhD

 Several of us bloggers have written about how cancer has impacted us.  We fight to tell people “I am more than my cancer.”  The slogan for Cure Today, which I love, is “I am more than a patient.”

     I certainly agree and there are many other aspects of my life.  I am a sister, aunt, friend, church member, sports fan, writer, reader, animal lover, speaker,  and on and on.

     However, I must admit that since my diagnosis, the cancer has permeated into every area of my life, both in a positive and negative way.

     I can no longer take long walks because of aching muscles.  I can’t attend sports events which involve too many stairs.  I am unable to ride in the car for long periods of time.  Because of the chemo and cancer, I am constantly fatigued.  I am profoundly deaf from the chemo I was on.  None of this will ever change.  That is just some of the negatives.

     However, I have changed in positive ways too.  I used to be extremely driven and work oriented.  Now I drop work to spend more time with my friends and family.  I no longer worry about every little thing.  When one is given a time limit to live, this “small stuff” doesn’t seem important anymore.  I am full of gratitude and thankful for each and every day I am alive.  I cherish the time left with my 14 year old service dog.  I love it when my cat curls up in my lap and purrs, because he is getting older too.

     I recently celebrated a birthday and am proud of being elderly!  I try not to worry as much about money matters, and what will happen in the future.  I realize that every single moment I worry wastes any time I have left on this earth.

     I could say a lot more, but you get the point.  Cancer has done positive things for me too.

     Cancer is not who I am, but much more.  I am more than my cancer.  I am more than a patient.  I have been able to combine cancer with who I have become.  I know all of us cancer survivors have done this and that is a wonderful achievement!

ON CANADIANS, THE COLD AND CANCER

I recently returned from a scenic and wonderful cruise to the eastern seaboard of Canada along the St. Lawrence Seaway.  I visited several communities.  In Canada, they do not call these population centers villages, cities or towns, but communities.  Every sign on the road as you drive along says welcome to our community of …and the name of the town.

     The tour guides on our excursion trips were outstanding and relished telling us about how the hardy Canadians survive the brutal winters in their country.

     I usually think of winter as a nuisance living in Northeast Ohio.  I do feel better physically during the cold months than the hot ones, especially when I am on chemo and the heat really bothers me.  But, after several months of ice, snow, bundling up, pulling on boots and driving in inclement weather along with the gray and gloomy skies I get sick of the weather.  I also tend to become depressed after a few weeks.  I love light, long days and being outside.  Ohio generally has a hard winter just for a few months from December to March.

     In Canada, the winters typically begin early in October and last until May. The natives stated matter of factly that they average ten feet of snow – yes ten feet not ten inches!  A “hard” winter might produce up to eighteen feet of snow.  I pictured the cold, freezing, blowing, drifting, bone chilling snow biting my hands and face and just shook my head.  How do they survive?

     Some people do escape to warmer climates in Florida, Cuba, Central and South America.  But the people who stay insist the ones who leave miss all the fun!  Instead of fighting and dreading the winter, they embrace it.  Most winter climates have connoisseurs of snow sports like skiing, ice skating and tobogganing.  But in Canada, these hardy souls tunnel through the snow and go to their community halls.  Different churches and/or community centers are located in every town.  The townspeople gather to play games, sing, socialize, eat, and get to know their neighbors.

     During the summer months (I was there in September) the Canadians are extremely busy planting flowers, plowing the fields, growing crops and collecting lobsters and mussels. Their flowers are absolutely stunning, and it is obvious they spend hours in their gardens.  Very little time is available for socialization.  But during the winter months they play and have a wonderful time with their neighbors.

     There have been studies done in some of these areas on why the crime rates are so low and the fact young people do not leave after college like other cold climates.  One answer is given – these children have a sense of community.

     What does all this have to do with cancer?  I soberly went over my eight year cancer journey.  When I was first diagnosed, I was upset, furious, scared and confused.  I was positive I was going to die soon.  I resented the side effects that laid me flat for days from the chemo. I hated being part of this exclusive club of cancer survivors I never chose to be a part of.  I worried every single day when I woke up if this was going to be my last one. I was convinced no one understood what I was going through because my cancer is so rare.

     Gradually, I began to adjust. I continued to live one more day until I no longer dwell on how long I have.  I found other cancer survivors who, regardless of the kind of cancer, understood my journey.  I know each one of us is different and makes his or her journey alone.  But we all share the same fears, emotions, side effects from the chemo, and facing an unknown future.

     I began to embrace my cancer family along with the doctors and nurses and staff at the cancer center.  I started to write and share my journey with other writers and readers.  I learned to cherish every day.

     Cancer survivors learn to tunnel through the snow.  We have a community to help us become stronger mentally and support us through the tough times. 

     When the winter breaks, when we find we are in remission, when there is no evidence of cancer, we see the spring and absence of snow, the flowers  growing and  the beauty of  long summer days.  But, we have also experienced the sense of family and community of winter.  Although none of us chose this path, we are fortunate in many ways to have both seasons.  What a lesson the Canadians have taught us!

HOW LONG DO CHEMO SIDE EFFECTS LAST?

I have a blood type of cancer and will always be on chemo.  I was told this from the beginning of my diagnosis.  As one could predict, the effects have worsened over the past eight years.  I have continuously been on chemo and more side effects seem to pop up each month. 

     Recently, my understanding oncologist took me off all chemo temporarily because my bone marrow biopsies, which I have every six months, remained unchanged and the cure seemed worse than the disease.  I feel much better than I have for a long time.  However, I know eventually I will have to go back on.

     I became curious because other cancer survivors have shared with me that they had shown side effects for years after they were completely off the chemo., I did some research and tried to check out reliable articles from the following agencies including the American Cancer Society/Health Line/Asco Post Chemo Care/Cancer.Net/Mayo clinic/Cure and Very Well Health.  What I discovered was amazing.

     There are dozens of potential side effects and more are being reported every month.  Obviously, not everyone gets all of them, and some fortunate people get none.  Many of us get a few.  But most of the above agencies agreed on the most common side effects.

     One of the most startling is cardiac problems due to both chemo and radiation therapy, which can affect the heart muscle. Fatigue is mentioned by almost every person without fail.  Chemo brain or fog is being recognized and proven by MRI’s.

     For younger patients, infertility can occur.  Hearing loss is experienced by many patients and hearing screening should be done.  Peripheral neuropathy is also common and sometimes can be permanent.  Osteoporosis is common in woman, who should have bone density tests to confirm or deny.

     Unknown to me, cataracts can develop and after some Cure contributors wrote about this, I made my eye appointment!  Dental problems and dry mouth from the chemo is also common.  Digestive problems and irritation to the stomach and esophagus can happen.  Chronic diarrhea is also another irritating result of chemo.  Radiation can cause scarring in the lungs.  And of course we all know about nausea and hair loss.  Some cancer centers like the one I go to have a Lymphodema team to help survivors who develop this complication.

     Another side effect little mentioned is irritation to the kidneys and bladder, which can cause side effects including increased urinary frequency.  For those of who have made those frequent trips to the bathroom like me – now they tell us!

 Glucose levels in the body can be affected thus causing or worsening conditions like diabetes. Tired and achy muscles that cramp and limit walking is also a miserable possibility.

     I also culled out some information on the longevity of these complications.  The Mayo clinic admits cancer survivors might experience late effects even years later.  The American Cancer Society states that while many side effects go away quickly, some may take months or years to dissipate.

     Fox news.com reports that Dr. Stan Gerson, director of University Hospital Sideman Cancer Center in Cleveland, states that all major cancer centers now have informed consent to alert patients to immediate and long term effects.

     I write this not to discourage other cancer patients, but to encourage them.     Very Well Health warns that survivors need to be their own advocates.  It is absolutely impossible for your oncologist to predict the effects on you.  We are all unique, which makes it very hard to determine what is going to happen – but also makes us special!

     What we do need to do is be honest with our doctors, both family practitioners and oncologists, and let them know what is happening.  Your chemo nurses are a great reporting source also – in fact anyone on your chemo team.  I suffered for months with gastric problems before finally mentioning them to my oncologist.  She referred me to a gastroenterologist, who discovered ulcers in the stomach tract.  One little pill cured the problem and I sleep much better at night!  My audiologist conducts regular hearing tests, since I have been deafened from chemo.  My dentist prescribed a specific oral mouthwash to keep my mouth from getting too dry.

     I get it – we all are so sick of medical appointments and going to doctors, we just cannot face one more commitment.  I also hate to mention one more symptom to my oncologist, because I do not want to be perceived as a whiner.  It is easy to put off regular checkup and we are probably all guilty of doing it.  However, we need to do our research and be vigilant.

     Most of all we need to be honest and talk to our team.  After all, this can save our lives, helps us to live longer and to have a better quality of life.  This makes it all a win – win!

 

 

 

 

LEARNING MY LIMITS THE HARD WAY!

I am on a wonderful vacation cruising through Canada and ready to have the time of my life. My oncologist took me off chemo so I would not experience the nasty side effects.  I had been eagerly anticipating this vacation for months.

     Step by painful step I am walking through picturesque Quebec City. All around me are historical old buildings, dozens of art galleries, unusual old cathedrals and several museums.  It is truly one of the quaintest and most beautiful cities I have ever visited.

     The problem is I can’t enjoy it one little bit.  The rain is pouring down in the hazy mist, the walking is treacherous, and every single muscle in my legs is tightening up in spasms, screaming in protest.

     My friend who took the cruise with me kept coming back to check on me.  We were on a walking tour with an extremely enthusiastic and knowledgeable tour guide.  I kept bringing up the rear.  After awhile other concerned people in the group began to ask me if I was all right.  The voice of the tour guide faded to a dull roar in my ears.  I had just had tea and pastries in the famous Chateau Frontenac hotel and we were heading back to the ship after two hours of walking.

     All I prayed for was to get back to the comfortable ship, take a warm shower and lie down.  But – I had to get there first.  My calves were burning like hot coals.  I was unable to take the large steps I needed; just tiny itty bitty ones like a baby. There was nowhere to sit, and of course no taxis in this part of town.  The relentless rain was pouring down my neck, and my raincoat was virtually useless.

     What was going on?  The people in the group asked me if it was my knees.  One person who had been behind me told me my heel was not sturdy and I should get a prosthetic device from a physical therapist when I got home.  Gamely, I thanked these wonderful people and concentrated on taking the next step.  When the ship finally loomed in my sights I pushed harder.  I was the last one to climb the ramp wearily as the crew was waiting to pull up the gangplank.

     After eight years of being on chemo, I thought I knew my limits.  I had already given up going to Ohio State football games every year because of all the walking, climbing many steps and the long drive back and forth to Columbus.  For some people this doesn’t sound like a sacrifice, but sports enthusiasts and Buckeye fans understand what it is like never to see Script Ohio, the band or the team in person again.

     My friend said to me sympathetically after we settled in the room, “Well, you are learning your limits.

     Damn it – why did I have to learn the hard way!  I checked the rest of my excursions in Prince Edward Island, Sydney, Halifax and Bar Harbor.  I limited myself to places I could sit and rest.  There was no climbing up rocks to the most photographed lighthouse in the world at Peggy’s Cove for me!  I was careful the rest of the time, the weather was beautiful with no more rain, and I had a memorable trip!

     I returned home to tell my oncologist this story. I told her how the pain and spasms scared me.  She explained that this was due to the cancer and the resulting anemia.  For once I could not blame the blasted chemo!  She said if I continued to have this happen, I could go on Procrit shots and she would monitor me.

     One problem for all of us cancer patients is just when we think we have learned our limits, they change.  For some patients this is only temporary and many people can resume most of their activities once they are off chemo.  But with a blood cancer, the learning curve is changing, curving, winding, dangling hope and then retreating.  Only a year ago I was able to go to the football game.  Two years ago on another cruise, I walked all over Barcelona.  But my body is changing and I need to adapt to that every single day. Also factors like the weather need to be considered.

     When I talk to other cancer survivors, they tell me learning their limits is one of the hardest things to do. I have the spasms to remind me.  But, I need to look at the positive side.  I enjoyed the rest of this wonderful cruise (pictures anyone)? I can still do short walks and most of all I am alive.  And that is what counts!

         

SOME DAYS ALL WE CAN DO IS TAKE CARE OF OURSELVES

I look around my apartment heaving a huge sigh. Laundry is piled on my spare bed waiting to be folded. Clean dishes in the dishwasher need to be put away before my next meal. Trash is overflowing in my wastepaper baskets. However, I feel too tired and weak from my low blood count and chemo to do any of it.

Wistfully, I recall the days I could work all day, come home and do things around the house and then go out for dinner! Those days are long gone. I am off the chemo this week, but next week I will feel even more fatigue when I go back on.

I do fold my laundry (sort of) and put away the dishes. I will not tackle the trash until tomorrow because I live on a second floor. This involves steps and it takes me a long time to do this particular task. I have balance issues from the chemo, and have to take each step one at a time holding the trash in one hand and the rail with the other. No more bounding up and down the steps for me.

Right now I am doing a real pity party. Fortunately, I do have a wonderful friend who comes and cleans for me twice a month and is a godsend. I actually had her before I was diagnosed with cancer, because I was working two jobs and would rather pay someone to clean then do it myself. Now I truly need her.

Eventually, a light dawns on me. I remember my wise mother in her old age remarking that she wanted to just take care of herself. She did it well until she was 90, and was devastated when she became dependent on others.

I can do most things I need to now. Maybe tasks are not done perfectly, maybe I move slowly, but I can do it. There may come the day I can’t as the blood counts go lower and I get weaker. I simply need to pace myself for daily tasks. I can’t spend any precious time I have left worrying about the future.

I often compare cancer (and life) to a roller coaster. It never is a straight line. Life dips and curves and winds and goes up and down. If you are going in a straight line, it won’t be for long. Cancer (And life) also can be compared to a baseball game. We get thrown curves and sliders and fast pitches and sometimes, like the day we found out we had cancer, we get hit by the ball! But, human nature being what it is most of us somehow moves on.

I have to take what I can get. I know sometimes all I can do are the simple things. I may need to postpone some jobs. I may not do it well. Laundry may be wrinkled, trash may overflow, mail may pile up, and dust may accumulate. But is that really important in the scheme of things? Cancer has taught me it isn’t. For now taking care of me is enough. And this is true for all of us both with and without cancer!

CANCER:YOU CAN’T DO IT ALONE

Recently I published a book on my cancer journey titled “Life is short – eat the donut!” I insisted on giving a copy to one of my dearest friends, who has helped me the most. It was she who was with me on my initial visits to the doctor ,when I was trying to get oriented to chemo. She accompanied me when I traveled to two major universities to get second opinions on treatments. She still takes me to all my bone marrow biopsies every six months. And she was the one there to wipe away my tears when my first oncologist told me I only had 100 months to live and this was an incurable cancer.

Edlyn looked over the acknowledgments in my book. I had so many people to thank, and know I probably unintentionally left some people out. I know most people do not bother to read this page, but as an author I always do because this page describes the personality of the author.

Slowly Edlyn spoke and said, “There are so many people who have helped you.”

I answered, “I know and am so fortunate.”

Her sensitive eyes met mine and she said, “But what about the people who don’t have this type of support. What do they do?”

I felt a shock tingle throughout my body. She was absolutely right. No one – and I mean no one- can ever fight this insidious disease alone.

Later, I gazed over the acknowledgements again. The dedication page was to my amazing oncologist. I also thanked all the people at the Cancer Center including the receptionists, lab people, doctors and nurses who worked there. There are over 40 of them and I know that because one year I gave each one a snowflake ornament for the holidays.

I thought about my family and friends who were with me during my tough start of a new chemo. Several of these friends brought me food. The friend who cleans my apartment is invaluable. My neighbors who carry groceries up the stairs when I am too weak to carry them have my enduring gratitude

I have a wonderful pastor and congregation, who support me immensely. I treasure my nutritionist and trainer from the LIVESTRONG program, who have done so much to keep me healthy and balanced!

I belong to a Patient Advisory Committee, and the other participants are such fighters and an inspiration to me. I have also met the administrators at the hospital who work so hard behind the scenes to ensure that things run smoothly.

I am fortunate because I have several close friends who “get it.” They laugh and cry with me though the ups and downs and they are wonderful. I also have received countless cards, prayers and love that keep me going.

My service dog is always by my side, and her sweet and gentle temperament never changes. She is old for a dog (almost 14) very stiff and sore and still wants to be with me. She actually picks up my keys that I keep in a basket in the hallway and hands them to me when I head for the door, because she wants to be with me so much! I am truly blessed.

However, my advice to others is to reach out and admit when you do not feel good and have a bad day. It took me a couple of years to do this. People cannot help if they do not know what you need. Since I am very independent and have lived alone` for over 45 years, this was a tough lesson for me. I already am asking friends and family if I start a new chemo, will they help me?

I truly do not know how people without this support do it. I am thankful every day. It does take a village and it is up to us to use it!