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!

PARTIAL CANCER REMISSION: TAKING IT ONE DAY AT A TIME

When I have my “what if”moments I remember this: Try to take things one day at a time

 

I am in a curious, coveted, yet uncertain period of my cancer journey.  “Remission” or what my doctor calls “partial remission” is here!

     A blood cancer such as mine is not curable.  I have been on chemo for eight years.  When my hemoglobin dipped below 10, the doctors put me on Procrit shots twice a month.  I feel more energy and better than I have for years!  I am taking advantage of not being exhausted and sick from the chemo.  I am doing the things I love like travel and writing, going out with friends and family, and taking slow walks with my aging dog.  I name this the “golden period.”

     BUT – there is usually a but and this is a big one.  The doctors don’t expect the shots to be effective any longer than a year - give or take a few months.  Then I will have to go back on the dreaded, but necessary, chemo again.  The two chemo’s I have been on are no longer effective.  So it will be a new medication with a whole new regime, new side effects, new fatigue factors – cancer survivors all know the drill.

     I have told myself (and others) that I’m not going to worry about it and just take one day at a time.  After all, I rationalize I could be hit by a car tomorrow and die.  Worrying does nothing and I have absolutely no control.  So I am not worrying.

     Except – I do.  Deep down I am acutely aware I am on borrowed time.  I am tentatively making plans for future cruises, hoping I can take them.  I worry about money and running out.  I worry about how I will take care of myself, since I am already past the expected life span for my type of cancer.  I worry about my 14 year old dog that is my ears, my partner, my soul mate, and a part of me.  What will I do without her?  How can I possibly adjust?  Or worse- what if I can’t take care of her?

     But then I swing back.  There have been other times in my life when I have worried about the future.  I have been without a job when suddenly the phone rings.  I have been down to my last dollar when money appears.  I thought I couldn’t go one more step, when I start to feel a little more energy.  My friends and family, who are my age, tell me they also worry about the future. What if something happens to their spouse before them? Can they take care of their house?  Can they afford assisted living or medical care?

     I understand that we all worry.  The cancer just makes it more imminent.  To be honest, I do find it impossible to take it one day at a time all the time- some days are better than others.

     There is a huge positive, however, with us cancer survivors. This horrible, insidious disease is a brutal, but effective teacher.  We think back to the first day we were diagnosed, the first awful treatments, the horrible side effects we had, whether it was from chemo, surgery, or radiation. We survived. Some days we were just too tired to go on.  But we did – we persevered. We came out on the other side. 

     So when I do my “what if” I remember this.  Yes I try to take one day at a time.  I know I will not always feel this good.  I know everything will change and my doctor has warned me it could go south fast.

     But I have had lessons from the past.  My faith, my family, my friends and my medical team will be there for the future.  And this is what we all need to remember!    

HOW DO YOU REALLY FEEL? A QUESTION TO ASK CANCER SURVIVORS

I learned a long time ago whenever someone had a tragedy happen – such as a loss of a loved one – to say less rather than more. A platitude like “This is God’s will,” or “There is a reason for everything that happens,” is just not what the person needs to hear. I am even careful about saying; “It will be OK.” What if it is not?

“I am here for you and will talk whenever you are ready,” seems to help. “How can I help, or what do you need?” is another positive thing to say.

After a friend was recently diagnosed with the dreaded “C-word” and said on social media how angry she was, I told her she had every right to be angry. She has spent years taking care of a sick husband and now she is ill. She should be angry at this insidious horrible disease. And anger does keep us going and determined to fight! I told her I was here when she is ready to talk about it.

There is something else I often ask after things settle down somewhat. “How do you really feel?”This gives people permission to be honest if they choose and they do not have to cover up or put on a facade.

After nine years of battling cancer, I struggle with questions from friends and family all the time. I do not want to burden people, upset people or make them feel bad. My mother was in terrible pain the last several years of her life, and would say she would not tell others, because all it does is make them feel bad too. She was a stoic and amazing person.

Rarely do I discuss how losing so much more of my hearing has isolated me. I do not like to admit the amount of fatigue I experience where I can barely move. I do not wish to describe the depression that covers me like a blanket as I contemplate the future. Or mention the anxiety I feel as I am running out of chemotherapies that will work. I do not wish to describe the different side effects of chemo such as constant diarrhea, frequent insomnia, muscle aches and neuropathy, because so many people have it much worse. Everyone has their own problems and they do not need to hear all of mine.

If people ask how I am I will say something innocuous like, “I am tired, but good.” Or “I am OK – this is a good day.” Rarely does anyone ask me how I really feel but I would probably tell them.

I am very fortunate to have a sister and a couple of close friend who I can call and ask if we can talk. Then we sit down and I will pour out my frustrations. I know they will not judge me and not attempt to placate me.

I suspect most cancer survivors do what I do. We have the public facade and the private one. And this is for all the losses in our lives, not just cancer. That is fine but in my humble opinion, we need to be sure we express ourselves and say how we really feel once in a while. It is healthy and helps us.

If you are a friend, a relative or a caregiver you may want to try this one question – “How do you really feel?” It is up to the survivor to choose to put up a façade or to be honest. It is their choice and you may have just made their world a whole lot better.

CANCER AND METAMORPHOSIS

I like to skim through some women’s magazines occasionally.  I am more of a book reader, but am amazed at what I can learn from a few short articles.

     I was reading the print magazine Oprah, which is available online at OPRAH.MAG.COM and was intrigued by an article titled “Shifting Tides” by the well known author and life coach, Martha Beck. (May 2019 p. 82-83).

     In vernacular, this article ‘Hit me between the eyes.”  The life coach was talking to a client who was suffering from Post Traumatic Stress Disorder (PTSD) after being a victim of the horrible and devastating Hurricane Harvey. She was suffering all the classic symptoms including anxiety, insomnia, eating and drinking too much, along with terrible flashbacks. Understandably the most innocuous rainstorm terrified her.

    Beck’s approach was an excellent one.  She suggested embracing the rain rather than being afraid. She told her client to play in the rain, catch drops on her tongue and witness the beauty of sparkling raindrops.  The client did this successfully, but the following day the shaking and crying continued with the emotional waves, which are difficult to overcome.

     Beck explains to the hurricane survivor that she is actually healing. She made a comparison that I think is wonderful for cancer survivors too! She talks about the metamorphosis from a caterpillar to a butterfly.  What I did not know is that in the cocoon, the caterpillars actually dissolve and become liquid before they are changed into the beautiful butterflies. The dissolved state is difficult but they come out a different creature.

     There is more in this article about the stages of healing, but this part truly resonated with me.  When we are diagnosed with cancer and hear the dreaded big C word, most of us dissolve. We are in the numb stage, experiencing shock, dismay, and other negative emotions that hit with a vengeance. Then we have the treatments and assaults to our body to endure.  However, we do metamorphose into a beautiful new creature like the butterfly – stronger and more positive than before. We will never be the cocoon again, because we have faced the fear of death, the pain and the trauma.

     I was talking to a group of survivors recently, and several of us acknowledged that cancer had actually introduced us to a new appreciation of life, along with new friends and experiences we never had before.  We had changed forever. Every one of our experiences was different, our types of cancer were diverse, and our treatments varied widely.  But we all had one thing in common - we came out stronger. Many of us volunteer and reach out to others as a result of our experiences.  I personally can say I have met many incredible people through my journey.  I will never go back to the cocoon, although going ahead is scary, because I have an incurable type of cancer.  However, I feel like the butterfly because I survived the metamorphosis and my wings are soaring!  We all should embrace this – no matter what trauma we have gone through!

 

 

ONE SPARK FOR PATIENTS WITH CANCER AND SURVIVORS

A cancer survivor tells us how we can warm people up with a small spark even when we do not feel well.

I have written before about how sad I feel, because after my cancer diagnosis, I don’t have the energy to do what I did before.  Part of it is because I quit two careers where I felt I was making a difference as a counselor and teacher.  However, I am also unable because of my, compromised immune system to be part of the “Pay it Forward" movement sponsored by Cure, where I would visit and encourage newly diagnosed cancer patients.  This has occurred not only because of the chemo and the non curable cancer, but I have endured a rare IGA immune deficiency since birth

     I do what I can and find sending cards means a great deal to people.  Just to receive something besides those pesky advertisements and bills in the mail is awesome.  I am also busy with a Patient Advisory Council at the Cancer Center where I get my treatments.  Presently, I am a “patient consultant” for the brand new center that is being built, and this is so exciting!  I conduct programs with my hearing ear dog to enlighten people about all she does for me as a service dog whenever I can.

     I am very hard on myself and smile about my family doctor of 25 years telling me, “It took cancer to finally slow you down!”

     I was born hard of hearing and became deaf from chemo.  I have been outspoken, and had a lot of “fire in my belly” in younger years, advocating and speaking up about rights for people with disabilities. I have worked either as a volunteer or an employee for over 40 years, informing persons with various disabilities about their rights.

     However, it was innocently singing a song in church one Sunday that I realized something very important.  The song we were singing is called “Pass It On” with both music and lyrics by Kurt Kaiser.  Please read carefully the first two stanzas

“It only takes a spark to get a fire going.

And soon all those around can warm up in its glowing.”

     There is a powerful message in these two simple and straightforward lines.  Often, I have been impatient in traffic, upset by a rude server or generally in a bad mood because I don’t feel good.  The day progresses and- no surprise- it is horrible because of my own mood.   I heard a stress program from an expert one time about coping with stress before you go home and kick the cat!

     How often has a warm smile, a friendly wave or someone leaving you in a traffic line cheered you up?  Somehow the day goes better and we want to “pass it on” to the next person!
     We never know how we have influenced someone with a simple compliment. Some of us write uplifting articles, or send a card, or tell someone what a great job they are doing.  It can make all the difference in the world.

     So – my friends- maybe we don’t have the energy anymore to start a raging fire, or possess the old “fire in our belly.”  But this song applies to everyone as we get older and pass the torch to the next generation.  It especially applies to us cancer survivors.

     It only takes a spark – and for us it is enough.  Go out, light that spark and warm people up!

   

 

 

CANCER SURVIVORS AND PARTIAL REMISSION: IF ONLY WE COULD FREEZE TIME

I think every one of us has wonderful periods of our life where we want to have nothing change. Then there are the other times when things are horrible and we can’t wait for everything to get better.
    
It was my wonderful oncologist, Dr. Shruti Trehan, who gave me the phrase and idea for this article. I had been through eight years of chemo to stay alive, accompanied with all the fatigue and discouraging side effects we all know. I was no longer able to tolerate the chemo. Meanwhile by the grace of God, my blood levels stabilized except for my red blood count. Presently, I am able to take Procrit shots. Without the chemo, my white blood count has doubled, and I feel great. I have energy I haven’t experienced for, well…eight years.
    
Now the caveat. My doctors have been very honest and told me the shots may last up to a year. I am only in partial remission, and eventually will have to go back on chemo again. This time it will likely be a new one with unknown consequences.
    
Meanwhile, my constant companion and soul mate is my hearing ear service dog. She has been with me for the past 11 years every step of the way, from my mother’s death to my diagnosis and chemo treatments.
    
Two years ago, I was heartbroken when she tore several ligaments in her elbow. I went to a great orthopedic veterinarian, who said he would perform surgery on a then 11 to 12-year-old dog. (She is a rescue and we do not know her exact age.) He explained she was in such great shape otherwise, and he knew how important her job is as a service dog. He could take away the pain, but not the limp. A horrible summer and fall passed where she couldn’t even stay with me for weeks on end, because I have steps to my apartment. My wonderful veterinarian and friends cared for her. She had to be caged after the surgery because she was to be absolutely still. This was heartbreaking for a dog who has flown all over the country, gone to conferences with me and accompanied me everywhere. It was devastating for both of us.
    
She could no longer come to the cancer center with me because it was too far for her to walk. They are in the middle of building a new cancer center with easier access.

Between my chemo and Sita’s injury, it was a tough time. Gradually, I improved and by a miracle, Sita was able to walk longer distances. She gets massages, chiropractic treatments and lots of medicines. Two years after the surgery, she is able to make the long walk to the Cancer Center again. The staff, who has given her treats for nine years, was elated. The first trip after such a long time, she knew exactly where she was going. She broke into a trot, took the winding turns and entered the center. I took off her vest so she could be petted as the call went up and down the hall that “Sita is here.” My doctor came out of her office, and Sita lay down with four legs in the air begging for a belly rub!
    
Life is so good right now and Sita and I are cherishing it. The doctor said to me later how she wished we could “freeze time.” I knew exactly what she meant. If only my remission would be permanent. If only Sita wasn’t so old. If only we can stay in the moment.
    
We all have times like this. Our children are growing up too fast, our parents are slowing down, the cancer may not stay in remission and we know all will eventually change.
    
And it should. On the contrary, we do not want the bad times – like two summers before when both my dog and I were doing poorly – to last forever either. The only certainty in life is that it changes – along with death and taxes. This is not just true for cancer survivors, but of life. It is these frozen times that are embedded in our memory and keeps us going. So – enjoy these times and remember them forever, even after they are gone. This is what gives all of us hope.