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. 

 

CANCER SURVIVORS: TAKE IT DAY BY DAY, KEEP PUTTING ONE FOOT IN FRONT OF THE OTHER

Sometimes all we can do it put one foot in front of the other to keep going.

 

Recently I was lucky enough to be featured in a newspaper article highlighting my books and telling about my journey with first hearing loss, then cancer.  The reporter, unknown to me, interviewed a wonderful friend of mine, who is a fellow cancer survivor.  My friend said that I was a role model because day by day I “Put one foot in front of the other.” As I read this, I realized that all of us survivors do this.  And to do this is not only helpful with battling cancer, but with life.

     Years ago, when I was working on my doctorate, I was told that most people do not get their PhD because of the dissertation.  I completed most of my course work in a year.  But I kept putting off the important research project required, and had problems getting started. I was told by a wise professor   that “You are not writing the great American novel.  Just start writing something.”  I finally did and after many hard months of working days and writing nights and weekends, I finally accomplished my goal of being “Doctor Jane.”

     This was an important lesson twenty years later on my cancer journey.  After eight years of chemo, I am temporarily off any type of treatment except for taking Procrit shots.  I was told by the Cleveland Clinic that they could be effective for about a year.  Then there are two new possible treatments for my unique type of cancer.  One is an oral chemo, while the other would make me so sick I would need to be hospitalized while on it.

     You guessed it.  Sometime I lie awake nights worrying about what I would do, how sick would I get, who would take care of me and would it work?  On and on and on.

     None of this is helping me one bit.  My friend is right – I need to put my head down and place one foot in front of the other until the next step needs to be taken.

     This is true in all of life.  I worried constantly about taking care of my parents when they were alive.  We all worry if we have children.  We worry about money, our jobs, our retirement, and getting old and feeble.

    People with cancer have to face this more squarely because we have reality right in our faces.  I still think about what will happen if I become really sick.  Can I afford assisted living?  How would I arrange care?  Before cancer, I figured I had 15 or 20 more years to think about it.  All of life is uncertain while we can drive ourselves mad with our brains spinning like a top.  We need to grab on to our faith, try not to over think, place our head down and put one foot in front of the other every single day.  Usually it works!

 

CANCER IS TRYING TO TEACH ME PATIENCE

Impatience was my worst trait growing up.  I was constantly reminded how low my patience level was.  I remember my mother repeatedly telling me over and over again, “You need to be patient.” Now that she is gone, my older sister has reminded me a time or two about this.  I laugh ironically at the old adage, “God please give me patience – and I need it NOW!”  

     I have always been a driven person.  Anyone with a severe hearing loss who has achieved three advanced degrees has to have some drive.  For a long time I did not have patience with other people, and had a quick temper as a child.  I learned slowly to control it most of the time.  As I matured I developed more patience with others and usually try to give people a break.  I had very smart friend with two deaf children ask me one time if maybe the hearing loss caused some of this, and I think she was right. I am more tolerant of other people than myself.  My therapist pointed this out to me several times, because I am extremely hard on myself.

     When I was getting my doctorate, one of my wise faculty teachers said something I would never forget.  She said my biggest fault, which would affect me as a counselor and teacher, was that I would try to make things happen rather than let things happen. On my first counseling job I was calling myself a failure after a client left abruptly.  The more experienced counselors told me the person wasn’t ready and it was the client and not me.  They explained the person would come back when she was ready and they were right!

     So what does this long diatribe have to do with cancer?

     William S. Burroughs said, “Your mind will answer most questions if you learn to relax and wait for the answer.”

     I think every one of us has so many questions when first diagnosed.  What will the treatments be? Will they hurt? How long will I be on them? How will I pay for them?  Will the treatments be successful?  Will I be able to work?  How long will I live?  Will I ever feel normal again?  And on and on and on!

     I never anticipated the long road to many of these answers.  I didn’t know that I would be undergoing treatments for the rest of my life.  I had to make tough decisions along the way to quit first one part time job, then the other.  It is nine years later and I still do not know how long I will live.  I am no longer able to take the two chemo’s I have been on, but will probably be on a new chemo within the next year.   Life never returned to normal and never will. Many bad – and good- things happened.  I ended up writing and publishing books and articles, and love the idea I am teaching people outside of a classroom.  I have friends and family support I never dreamed of.

     Once in awhile I go back to the impatient former self.  I start driving myself crazy asking these questions I mentioned when first diagnosed.  But Burroughs is right.  If I relax, the answers will come.  I didn’t decide all the answers overnight and still will not.  I have learned to be on the Procrit shots now, and to trust my oncologist for the next step.  Giving up control and trusting the doctors is in alignment with being patient.  Let things happen – do not try to force them!

     “Relax” as Burroughs advises is a difficult concept for me.  However, it is important for all of us.  Relax and trust – we cancer survivors have no other choice unless we want to be miserable and worried all the time. Cancer is a nasty teacher, but it certainly is a powerful one!

 

 

 

WHAT IS REMISSION

My doctor explained I was in what was called “partial remission.”  What does this mean?  Web MD https://www.webmd.com/cancer/remission-what-does-it-mean

explains “The cancer is still there, but your tumor has gotten smaller – or in cancers like leukemia, you have less cancer throughout your body.”  Complete remission means all your cancer cells are gone and there is no evidence of disease (abbreviated NED.)  However, doctors are cautious about using the term “cured”  with any type of cancer for five years, because it can come back.

     With a blood cancer like mine (MDS), there is no cure and I will never be NED.  All my bone marrow biopsies show abnormal cells no matter what. The number of cells on the deletion 5q has gradually increased over the past 9 years from 30% to 60% to 90 - 100%.  This means there is a tiny little wrong hook on each red blood cell.  But the oncologists have told me not to worry unless the blast cells increase and start to go into leukemia, which it did once.  I was put on a powerful Vidaza shots for two years, which kept the blast cells down and the MDS from worsening into a full blown leukemia. I know I was one of the lucky ones.

     I had no idea how important blood work is until I was diagnosed with cancer.  Now I know that MDS causes the red blood cells not to carry blood correctly to the body.  Results can be inability to walk long distances or climb steps, extreme fatigue, and shortness of breath along with other bothersome symptoms.  Thankfully, the two chemo’s I was on, which were Revlimid and Vidaza, kept me going!  But I never truly felt that I was in remission because of the terrible side effects we all know too well.

     After eight years a strange phenomenon happened.  My hemoglobin count dropped below 10. I was miserable and could barely function.  Going up the stairs to my apartment was impossible without hanging on the rail, and pulling myself up step after step.   If the hemoglobin part of the blood count is below ten, the protocol is to start on Procrit shots. My blood levels improved and I felt better than I have since first diagnosed.  My energy was back, I could climb steps normally, and I was no longer experiencing those awful side effects.  The only problems after the shots are headaches and muscle pains.

     I have been fairly warned by the doctors this euphoria won’t last.  The average time for these shots to work is a year, and I will need to go back on chemo.  I feel like many of us survivors that I am a ticking time bomb. 

     I don’t even know if the scientific community would technically term this a remission, since the cells are all distorted.  But being chemo free and feeling good, I call it that.  I am well aware that this is temporary, but as I wrote in another article – so is life! (Being Off Chemo is Temporary, But so is Life!)

     Remission for me is not having horrible diarrhea, extreme fatigue, chemo fog and painful shots.  Remission for me is feeling good.  Remission for me is being able to travel, take walks with my dog, spend time with family and friends, and write.  Maybe the better word is reprieve.

     The definition of reprieve is “A temporary escape from an undesirable fate or unpleasant situation; or to give relief or deliverance for a time.”  I have also been told there are new chemo’s out there I can try when my reprieve ends in order to stay alive.

     So yes, I will use the word remission or reprieve and go for a walk instead of a nap.  Cancer survivors learn to appreciate every day and that is good enough for me!

          

CANCER SURVIVORSHIP AND THE ART OF LETTING GO

I have a daily calendar on my desk with very wise sayings.  One that really stood out was by J.C.Watts.  “It doesn’t take a lot of strength to hang on.  It takes a lot of strength to let go.”

     I had to think about this for a minute. We have all seen cartoons and pictures on Facebook and in newspapers of a animal – usually a cat – “hanging on” a ledge – sometimes just waiting until Friday!  This looks hard when you are barely able to use your fingernails and digging in.  So what does this have to do with being a cancer survivor?

     We immediately hang on in every way that we can after being diagnosed.  We are fighting for our health and our lives. We do not accept that we will not win this battle and hang on for dear life.  And we are applauded for it by our medical family, our family and our friends.

     We hang on through the initial diagnosis.  We hang on even harder through the horrible treatments including radiation, or chemo, or surgery, or all of the above.  We sure hang on to our loved ones harder than before, because they are so precious to us.  We hang on to our life seeking normalcy, and desperately want everything like it was before.

     So why do I talk about letting go and where is the courage in that? Because every one of the people I know, who have had any type of serious illness such as cancer, says life is never the same.  We have faced the prospect of dying and it will change us forever. I get e-mails from all over the country from people who have left their jobs, retired early, moved to a place they always wanted to live, and traveled.  But they had to let go on their previous life to embrace the new one.

     Many of us have lingering side effects and fatigue after treatment from cancer that we cannot deny, and in some cases will never diminish or go away.

      I was forced to give up two part time jobs I loved because of chemo and fatigue.  I fought, I cried and my wise doctor finally made the decision for me to leave teaching because of a compromised immune system.  However, if I hadn’t given that up I couldn’t have gotten two books and many articles published.  I would be grading tons of papers instead.  I had to let go to embrace my new profession.

     I also had to let go of being around anyone who is ill, visiting hospitals, nursing homes and sick people.  I cannot now be part of the “Pay It Forward” program that is being promoted by Cure.  This program encourages people who have survived cancer to reach out and help people who are newly diagnosed and in shock like we once were.  With a PhD in counseling, I would have been able to do this and love it!  I sadly informed the professionals who asked me to do this I couldn’t do it.  I am on the Patient Advisory Council at my hospital where I receive treatments. These wonderful people wisely put me on another project I could do.  I have been to several meetings with the architects and staff while helping with suggestions for making our new cancer center user friendly for patients.  It has been a fun new project and I am learning a lot! It took a wise and compassionate staff to figure out what I can do, and I accepted the challenge.

     Fatigue has made me give up many activities.  However, there are new adventures such as joining a book club, being on church council, and sending cards to people at my church that I can do and enjoy it immensely.

     Finally, my last decision is the Living Will.  Everyone knows I do not want resuscitation or heroic efforts to stay alive.  I want to let go and hopefully be in a better place without undue suffering.  This is unfortunately a choice we all have to make, but cancer survivors have to decide a little sooner.

    So – hanging on is good.  This enables us to get through tough times.  But we also need to figure out when to let go.  The greatest part of these decisions is that often the next step or place we find ourselves is better than anything we ever dreamed of!