TURN THE PAGE

A cancer survivor talks about being forced to turn the page after her diagnosis.

“Don’t close the book when bad things happen in your life. Just turn the page and start a new chapter!” Those are the words of LaToya Jackson, which I feel exemplify my life since receiving a cancer diagnosis.

     All of us are scared after being told about a potentially chronic and/or fatal illness.  We are fearful for our future or even wondering if we will have one. Few of us truly have any idea of the impact a diagnosis of an insidious disease like cancer will have on our lives.  However, most of us figure out how to turn the page.

     I was incredibly naïve when I was told my cancer was incurable, but treatable. I thought I would continue to work the two part time jobs I loved and just go on. After all, I was used to working 10 hour days and nothing was going to stop me now- right! So I would just keep on trucking.

     But we all know that treatments become a way of life. My friend views her cancer as another job.  The treatments, doctor appointments, blood draws, fatigue, and other side effects prevent us from going back to where we were before and does become a full time job.

     And I have friends who choose not to go on as before. They quit their high powered jobs to do something else they love, or they turn to survivor programs and visit with patients .Some retire to move to a place where they have always wanted to be. Each one of them, along with their family and friends, started a new chapter.

      For a couple of years, things remained the same for me. Then I was forced to quit one part time job, but kept the teaching one. I figured after class I could go home and rest.  I had been voted Faculty of the Year by my students after my diagnosis, and most of them had no idea I was fighting cancer.

      I increasingly got one infection after another and had to start a harsh new chemo.  My oncologist gently told me I had to quit teaching. When I got home by myself, I kicked, I screamed, I cried, and I was angry.  Why would something I love be taken away from me so cruelly?  I already had medical bills out of the wazoo, had to downsize to a much smaller place because of money, and given up one job.  Why did I have to do this too?  

     But, Jackson was right.  It was time for me to turn the page.  I began writing, revised my old worn out website, published a couple of books and began to blog for Cure. I love it even more than teaching. And by doing it I am teaching to a worldwide audience as people contact me from all over the globe!  And if I just do not feel like getting out of bed early, I do not have to!

     Changes happen to us at every phase of life and not just with cancer. I can tell you not to kick and scream, but then I would be a hypocrite. What I can say with certainty is this. If you just turn the page, a new chapter that you never dreamed of will emerge!  

 

 

What Does Cancer-Related Fatigue Feel Like?

How do we describe the type of fatigue cancer survivors feel? Here is one explanation.

I have been battling a rare blood cancer for almost ten years now. Since it is incurable, I have also been battling fatigue for the same amount of time. Presently, I am on weekly shots just to keep my red and white blood cell counts up enough to avoid the risk of constant infections and to keep me going and writing!

When I was on chemo for 8 years, I was even more exhausted with what doctors would term malaise. This was both from a toxic foreign substance being put into my body, and the nasty side effects like diarrhea that depleted me of energy.

Right now I am in sort of a remission, but still chronically tired. People do not realize how bad the fatigue is, but when I push too hard, I may end up in bed for a couple of days. My friends know me and have mentioned this, but they also realize this is part of my personality. I do not want to miss important events, so I go along and pay the price later.

A dear friend who has survived breast cancer asked me recently what “my” kind of fatigue is like. I looked at her initially in astonishment. She had breast cancer! Then it slowly dawned on me what she really was asking: she is recovered after several years, and feeling as close to “normal” as anyone after surviving cancer can feel. She was asking what it was like to be me.

“I feel like a blanket is covering me, a very heavy one and I have to push myself up to get out of bed in the morning,” I said.

She nodded – that was enough of an explanation for her.

Yes – this type of fatigue is different. No matter how much sleep we get, it takes an effort to move every single limb. We may be out with friends or family and suddenly need to crash. We sit down to watch television and end up falling asleep – though I did that before cancer! We never truly feel energized like the little bunny that sells batteries on TV.

Of course, there are things we can do to combat fatigue. Proper nutrition, regular exercise, keeping as active as possible given our situation, and trying to stay positive because negative thoughts drain us of any remaining energy.

To complicate my fatigue, I am prone to some depression. Recently I went out for coffee with a wonderful friend. Tearfully, I told her my blood work was low as always, but remained constant so I must be depressed. I explained a number of things going on in my life that were bothering me. And then BAM – a few days later I visited my doctor, and sure enough the red blood cells had decreased. She increased my Procrit shots to weekly instead of every other week. Later, my friend told me she thought all along it was physical, not mental. Honestly the physical and mental feed into each other, so should it make any difference? We are still tired…

It all feels like being covered by a heavy blanket. But we survivors have learned somehow to pick up the blanket, lay it aside and get up. Because, after all, to give in would be much worse!

DERAIL THE NEGATIVE THOUGHTS!

 

Every cancer survivor has those days when the negative thoughts take over. Why not use visualization of video games to get rid of those self defeating ideas!

 

 

As a former counselor, I used a lot of cognitive therapy with my clients. We know that the brain cannot handle two thoughts at the same time, although they can occur very close together in milliseconds! But therapy works on replacing negative thoughts with positive ones immediately to help people gain self esteem and hope.

     Let’s concentrate for a little bit on the negative thoughts – or brandishing them. We need to derail and destroy the bad before we replace with the good. I am a big believer in visualization. Picture a train suddenly going off the tracks. You do not want an accident in real life, but you do want them in your negative thoughts.      

     The next time your thoughts are going down a rabbit hole, get that train off the track and picture a new train chugging ahead happily with all the good things in life.    I do not play video games or even know much about them. But I do know that kids and adults like to shoot and blow up pictures on the screen, just like we need to do when depressed.

     It does work.  Recently, I was over tired and attempting to take a nap. Without warning,  just as I was ready to doze off, I started thinking about my beloved 15 year old  service dog passing away. BAM! – I exploded that that thought with a blast.  Without warning, I got caught in my negative cycle. My doctor told me I may be going out of remission – KA POW – I visualized fireworks blowing that idea right off the brain. I wondered what would happen if I got so sick I could not take care of myself. WHAM – A huge hammer came down and pounded that idea into the ground!

     Gradually I relaxed, breathed deeply on my brand new mattress, and enjoyed the gentle breeze of my ceiling fame installed for me by two wonderful friends from church. I dozed off happily.

       We all experience these negative thoughts that come from nowhere. And cancer patients have realistic fears. We counselors talk constantly about positive thoughts replacing the negative.  However, I never was told how to destroy the negative ones before they take hold. So – my friends – work on hammering and whamming and exploding those intimidating fears until they are gone. It makes us feel better and hopefully brings us peace of mind, which is priceless!

"NEVER GIVE UP"AFTER A CANCER DIAGNOSIS

“Never give up for that is just the place and time that the tide will turn.” Author and social activist Harriet Beecher Stowe spoke these famous words that can certainly have meaning for us cancer survivors.

I’m sure I am not alone when I say I felt like throwing in the towel when I received my diagnosis and learned that my cancer was incurable. I also felt like giving up during the painful times with powerful chemotherapy and finding out, at the time, that there were no other treatment options for my rare cancer.

But just then, the tide turned, and a new development occurred. Now, there is research constantly being done and most of us are alive because of it.

Just as the ocean tide shifts and changes, flows in and out, and becomes angry and calm, so do our lives.

This quote doesn’t only apply to cancer, it can help in other areas of life, too. The job comes when the bank account is depleted; a child seemingly gone astray tells you what you mean to them; a relationship gets mended; and sometimes, a person is released to a better life like my father with his terrible dementia.

Sometimes I get in one of my depressive states and worry about my future. I am single and think about how terrible it will be when I am no longer able to take care of myself. That seems to be the exact time when my dog comes barreling up to me, happy and joyful at the old age of 15. My standoffish cat crawls into my lap and purrs. I get an encouraging text or email from a friend or a relative. With a chronic disease, we learn to treasure these small, yet mighty, events.

This is the best advice I can think of. Hang on my friends for just one more minute and it can make the difference in our lives.

LIVING ON BORROWED TIME WITH CANCER

One of the greatest things about being a writer is that I have the opportunity to correspond with people with cancer from all over the world. Unfortunately, cancer is a universal disease. I have learned so much and am grateful for that.

  I spoke with a woman named Georgia, who was initially given a year to live with her cancer and surpassed that. When speaking with her, she said, “We are living on borrowed time.  I kind of like that though. Every day is a gift. Borrowed time is a gift. Can you write about this?”

      I mulled the idea of borrowed time for a while, until I found another quote I love “The butterfly counts not months but moments, and has time enough.” I should note that I am fascinated by butterflies: Their metamorphosis from a cocoon to a butterfly was the emphasis of some of my previous contributions. Butterflies have a relatively short life span. The average butterfly lives 7-10 days.  Some live 150-180 days.  Meanwhile, a chosen few live 365 days. 

      I have lost friends and family from this horrible cancer disease.  I don’t feel any of them lived long enough. My oncologist told me one time it is never long enough for her patients.

     Then, I think how these friends impacted me even after being diagnosed with cancer. They knew it wouldn’t be a “normal” life again, but they took advantage of the time they had left.

     One particularly close friend, Sharry, was in hospice in a coma and her wonderful daughter. Tressa, texted me.  I asked if she wanted me to bring my hearing ear service dog, who my friend adored.  Tressa and Sharry were the ones who encouraged me to get my precious Sita. They would take care of her if I was on one of my cruises. Sita climbed up in Sharry’s lap and stayed until it was time to pull the ventilation tube.  Tressa told me later her mother expressed the wish to have a dog with her before the coma.  Sharry was a dog groomer, and these wonderful creatures were a huge part of her life. I texted Tressa a few minutes later and did not know this - talk about serendipity! Tressa told her mother Sita was on her way right before she lost consciousness. We think she knew somehow Sita was there. Sita didn’t want to leave her and comforted all of us.

     I wanted many more years with my friend (we all did) but I had to realize it was enough. Butterflies and dogs and other creatures of God have a lot to teach us. They have life figured out a whole lot sooner. They grasp each moment, do not worry and show unconditional love.

     We can all learn from the butterfly to count moments not months, and enjoy every single minute we have! 

    

 

COUNTING OUR BLESSINGS WITH CANCER

Cancer survivors become experts at counting their blessings!

One of the words I read constantly in the articles published by Cure is “blessings.” I also hear it frequently during church services and from friends and family.

     Samuel Johnson said, “Of the blessings set before you; make your choice and be content.” WOW!

     I find it no accident that people who are positive and talk about blessings appear to be happier.  I cannot ever judge another person’s happiness, since we are all actors and actresses on a stage of life.  Some people are just putting on a good face.  However, when I look at people whose faces shine, light up, make me feel good, I am pretty sure they are happy and counting blessings. 

     Some are rich, some are poor, some are old, some are young, some are sick, and some are well.  They don’t often complain. Everyone, of course, has bad days, but these people seem to have more good times than bad.

     It is not that they have had great lives, or everything has been wonderful.  Like Samuel Johnson said, every one of us makes a choice. If we live long enough; inevitably we suffer illness, loss of friends and family, lost dreams, financial hits and just plain everyday stresses of life. 

     Life is never easy.  But the people who seem to have a smile on their faces look at the times they feel well, the great events celebrated by friends and family, reconciled their dreams, and know money does not necessarily bring happiness. They count their blessing starting from getting up in the morning to getting into bed safely at night.  Their self talk consists of thinking positive thoughts like today I was safe, today I could get out of bed and live my life, today I could smell the flowers and appreciate the sun.  And on and on on with good thoughts..

     Cancer survivors have learned this the hard way.  Now when I wake up, I am thankful for another day I can climb out of bed and be with friends and family, do my writing and celebrate life.  I pray and thank God and the universe for this. I did not always say this before cancer, because I took every day for granted.  I do not do that now.  We survivors have a new appreciation of Samuel Johnson’s quote.  Cancer can be a tough, but effective, teacher.

     We can make our choice, count our blessings and celebrate, while knowing that is enough for today – and always!

CANCER SURVIVORS : DO IT NOW!!

We will all eventually run out of time to do things. But for cancer survivors this sense of urgency is even greater.

 

Almost every single cancer survivor I have met says that the one gift from a terrible disease like cancer is we learn to appreciate every single day. It is sad we need something like this to remind us, but that is typical of human nature. How I wish I had some of that time back that I spent worrying!

     Paulo Coelho says it all “One day you will wake up and there won’t be any more time to do the things you’ve always wanted. DO IT NOW. 

     I love to travel and after my diagnosis, have tried to take a cruise every year.  Yes, I dip into savings and my financial advisor gets upset, but my cancer is incurable and I tell him I need to do it while I am able.

     I cherish holidays with my family and precious times with my friends.  I bask in the love of my church family. I am always trying to explore new places and do new things.

     There is a downside to this. I have written three books and am working on the fourth one.  I was born hard of hearing and am now profoundly deaf.  Life for people with disabilities is so different now from the 50’s and 60’s, when I grew up without the American with Disabilities Act, the wonderful technology and the research knowledge we have today. When I taught college classes. my students told me repeatedly this story needs to be told.

     I finally sat down and wrote it out. Now I am typing and revising and revising and revising!  But it provides a huge dilemma for me.  The time I spend on the book is time away from doing “fun” things – or even cleaning out my closets! And I want this book to be my legacy since I don’t have children.  Every cancer survivor also understands the fatigue. I get so tired I want to throw the book out the window – or wait a while to finish it.

     But the sense of urgency remains. Like one good friend who is deaf said to me, “You are the only one who can write this story.”  No pressure –right???

    All of  life is a balancing act and we all experience the juggling of work, school, kids, family, spouse, friends, getting things done  like paying bills, and it goes on and on.

     I have discovered that writing a book is a constant balancing act too. I literally lay in bed at night wondering what to include and what to delete. And we all rewrite over and over again!  

     In truth. none of us are assured of the next day. One fatal illness, accident, or act of violence can change everything.  But before cancer I had a false security of feeling I had time.

     I have decided that I am driving to finish the book while in remission. I pray that I can do it. I still go out with friends and family and try to squeeze a little time each day for my manuscript. The closets can wait. And when I am finished I will have one whale of a celebration party!

     So my friends – don’t wait. Fulfill your dreams now, because we have learned the hard way time is not infinite for us. I know cancer is a tough teacher. However, thinking back over some of the teachers I had in school; the tough ones are the I remember the best and from whom I learned the most!

 

CANCER CAN FEEL LIKE A TICKING TIME BOMB

How do we cope with the feeling that our body has somehow betrayed us and we have a ticking time bomb inside of us?

 

When a person is first diagnosed with cancer, he or she is numb. We all know people who have this awful disease, but can’t believe it is actually happening to us! The mind goes into a shock that naturally protects us from totally comprehending how much our lives have changed. This same shock or numbness protects us when we lose a loved one, have an accident or injury, lose a job or a host of other unexpected tragedies.

     Gradually we begin to comprehend how our lives and those of our families and people who love us really have been altered. The chemo, radiation, tests; surgeries all change our perception of our body forever.

     Eventually we settle down and we may go into NED (no evidence of disease). We may experience remission or undergo chronic treatments until they no longer work. All of this can occur over months or even years.

     I have been battling my MDS for 9 years now, and am thrilled to be in remission. I have been worried it is only temporary because the doctors have warned me it is. My life is indeed bittersweet. I have gradually learned to stay in the present, and try not to worry about the future.

     However - and it is a big however - if you ask me to be brutally honest there are times I feel like my body is a ticking time bomb. I know there are those little but mighty cells in my bone marrow cancer that will turn on me and eventually weaken my body until I pass.  I don’t dare to say this to my friends or relatives, who haven’t been diagnosed with cancer.  On rare occasions when I mention the strong possibility of a shortened life, I get the retort “Well I had a friend who died of a brain aneurysm or a heart attack immediately – we all can go through that.”

     No my people – this is different. It is one thing to suddenly die and it is an awful experience for the people around them.  It is another thing to have a doctor sit down and tell you there is a potentially fatal disease lurking in your body and in some cases put a time limit.

     Yes – we are all dying each day from the minute we are born.  None of us get out of this life alive. But it is hard to be chronically ill and feel like the body is going to turn on you – with any disease – like a ticking time bomb.

     The positive about this is if there was a time to have cancer it is now. With the constant new medications the bombs are slowed down and sometimes even stopped. How great is that!  New treatments are being researched every day.

     The other part is with that ticking time bomb; I appreciate every single minute of life and intend to make the most of it.  And we survivors have learned to do that.  Even if our physical bodies don’t last- Hope is eternal!