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!   

 

MAKE THE INTERNET YOUR FRIEND, NOT YOUR FOE!

I receive e-mails and questions from people all over the country because of my website and articles I write for CURE®.

There are so many poignant questions and concerns:

“What chemo are you on?”
“What are the side effects?"
“I am scared to death to start chemo after reading about the side effects from patients on the Internet.”
   
I just want to shout through the computer – "STOP DRIVING YOURSELF CRAZY!"

I am the first person to Google any new conditions, chemo or treatment I am on. However, the key is knowing when to stop! When I was first diagnosed with myelodysplastic syndrome (MDS), I read about it by the hour. The more I read, the more confused I became. It is a cancer, it is not a cancer, you can live an average of 18 months, and you can live up to 9 years. Some people need oral chemo, others need a bone marrow transplant – HELP!
    
When I finally found out there were four or five different kinds of this cancer and determined which one I had, I settled down to read about that one. I was fortunate to have the one that people live the longest. I found out which oral medication I would be on. I switched from a doctor who would not answer my questions to one who always asks before she leaves the room if I have any concerns. Then I signed off because I wanted to stop reading and start living!

Here are four tips to keep in mind when researching your condition.

1. You will not experience every symptom listed.   
Each time I have been on a new chemo, I look it up. But here is where you need to be careful. If one reads the literature accommodating any – and I mean any drug (even aspirin) there seems to be every side effect listed in the world. Drug companies are required to list any symptom one person or more may report. Admittedly, chemo is poison so somewhere in the world people would have suffered nausea, vomiting, allergic reactions and on and on. But most people do not have every single one of the reactions or they would be dead!
 
2. People who suffer negative effects are more likely to write about them than success stories.
When people tell me they are scared to go on chemo after reading all this “stuff” posted by patients with cancer on the Internet, I use a caution: Remember that people who suffer negative effects are more likely to write about them. If the effects are not as bad, they may be off doing other things and living their lives. The remarks on the Internet can be skewed. It is not that I don’t believe patients have bad side effects and I have certainly had them, but I would rather experience some of these then not live!
    
However, the cancer survivor does need to know what to look for on each new medication. When I started my Vidaza shots, the nurse and the lab assistant sat down with me and carefully went over a list of side effects including fever and chills. They told me to call the doctor no matter what time of the day or night if my fever was over 100.4 degrees. I did experience these effects by the third day and called the oncologist on duty. We decided since I was coming in the next day I would be checked, but the fever went away on its own.
    
If something happened that I suspect is a side effect of chemo like the esophagitis and ulceration of the stomach I experienced, I would look it up to see if this was common. It was listed as a possible side effect, but a single pill from my gastroenterologist took care of it and I moved on.

3. Every patient is unique and can respond to treatments differently. 
We also need to remember that every person is different. For example, the doctors are reluctant to put me on steroids due to a rare immune deficiency. They are not sure what would happen because the statistical chances of finding a patient or two with both my rare type of cancer (MDS) and the rare immune deficiency (IGA) is slim to none. If it becomes a matter of saving my life to be placed on steroids, I know the doctors would do it under strict medical supervision.
    
Recently, I was put on Procrit shots for several months. I quickly looked up the side effects. The usual long list was there but the one that repeatedly came up first was the danger of blood clots. I turned off the computer knowing if there is any redness or swelling, I need to go to the Emergency Department immediately. The Internet provided me with the important information I sought, so I decided to stop there.
    
You may also want to use your pharmacist to help you with any new medication, whether chemo or not. These professionals work with the drugs eight to twelve hours a day and are very informative and helpful

4. Consider the source.
The other thing we need to remember is where the information is coming from. Other patients are a huge help in support and ways to cope. For factual information, be discriminating on the Internet, and use realizable sources like Cancer Center of America. AICR, Mayo Clinic, Cleveland Clinic, MD Anderson and other research facilities.

People actually have sent me articles stating there will be a cure for all cancer coming out in a year. When I check the source; it is usually a place I never heard of.

Really? I think if there is a cure my oncologist would tell me!

In summary – use the resources at your disposal but be careful. Do not get into a panic due to every single story, symptom or side effect. You are an individual and it is your body. Trust your own instincts and ask questions of the people who know you the best, like your doctor. Let the Internet be your friend – not your foe!

 

 

 

 

 

 

 

 

 

 

 

 

CANCER 'SURVIVOR':WHAT'S IN A WORD?

Isn’t everyone a survivor from the time of diagnosis to the end? One reader thinks so.

By Jane Biehl PhD

I never believed the old adage “Sticks and stones may break my bones, but words will never break me.”  I have been terribly hurt by words and have, unfortunately, uttered phrases I wished I could take back as soon as I said them.  Words and language are very important.

     However, I am a little – no a lot – puzzled about the bantering around in the cancer community about what the word “survivor” means.

     I was thrilled when the Cancer Center where I receive treatments decided to sponsor a Gallery of Hope for cancer survivors. The director said she called several people, who said they were interested.  A professional photographer took the pictures and a quote is written from each person.  The pictures will be hung in a huge atrium overlooking where ground is to be broken in the fall for a brand new Cancer Center.

     I was distressed, however, when she stated several people had declined, because they were still undergoing treatment and felt they could not be called survivors.

     Wait - what! I always have felt from the second of diagnosis we are surviving.  We put one foot in front of the other and moved on.  I did feel I had not been through the trauma of some of my cohorts who faced surgery, radiation and mutilating treatments.  When I gathered with others who accepted being in the Gallery of Hope, several of us confessed we felt this way.  However, we all had our stories, our individual problems and agreed to participate, though we felt humbled.  I realized personally that eight years is a long time to be on chemo, thus my story was unique, and so I went ahead and said yes.

    I considered it truly sad that the term “survivor” connotates such different meanings to different people.  I was concerned that some surviving members of the cancer community didn’t participate in this wonderful program because they weren’t “cured” or achieved NED – no evidence of disease.

Wikipedia (dictionary.sensagent.com/cancer survivor/en-en/) says “A cancer survivor is an individual who is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life.”

     The National Coalition for Cancer Survivorship also defines it from the beginning of diagnosis to the balance of life, even if dying.  Furthermore, NCCS also extends this term to family, friends and voluntary caregivers. MacMillan Cancer Support, on the other hand, excludes persons in the terminal phases of illness.

     All admit that survivor is a “loaded” term.  In the breast cancer culture, it defines women who have had an emotional or physical trauma.  Alternate terms are also used such as “alivers” and “thrivers” which emphasize living as well as possible.  This terminology even extends to “previvers,” who have not been diagnosed, but survived a predisposition to cancer due to certain genetic mutations.

     Rick Boulay (https://www.curetoday.com/community/rick-boulay/2017/12/cancer-redefined-survivor) is a gynecologic oncologist. He maintains a diagnosed patient is already a survivor.  At the other end of the spectrum is Howard Wolinsky (https://www./medpage/today.com/special-reports/apatientsjourney/79229 ) who admits that survivor is a better term than the previously coined term of “victim.”  Since he has had no treatments other than biopsies for surveillance of prostate cancer, he doesn’t feel he deserves to be called a survivor. In my book, going through biopsies and waiting for results is like having a Sword of Damocles hanging over one’s head, and is another method of surviving. But if he is uncomfortable with that term I can accept this.

     I could go on and on with various articles, but I am going to state my own opinion here.  Please, people – let’s get a middle ground.

     Some of us older people remember in the world of disabilities when we called people who had a disability “handicapped.”  The community of people with various disabilities was insulted, because the term came from handing out a cap for begging.  So the term was changed (correctly I feel) to a person with a disability, emphasizing the person first and the disability second.

    Another attempt was made to change the term to physically challenged.  As a person with profound hearing loss, I truly thought this change was over the top.  Let’s stick with the term disability and be done with it.

     I don’t think cancer patients should be called “victims”.  However, to say someone diagnosed with cancer isn’t a survivor because they are undergoing treatment and not cured is not fair! 

    If people shy away from using this term, that is their choice. I do not want them to choose not to use it for the rest of us.  Currently 65% of adults diagnosed with cancer in the developed world are expected to live at least 5 years after the diagnosis according to Wikipedia.   They are all warriors.  And this includes the family, friends and caregivers who do so much for us.

          A dictionary definition of survivors (https://www.bing.com/search?q=definition+for+survivor&form) is a “Person who copes well with difficulties in their life.” Every single cancer patient I know is coping one way or another.  It is not up to me to judge how well, because we all cope differently.

     Call yourself whatever term you wish.  Join or don’t join a group who calls ourselves survivors.  But – please- stop saying those of us who have not been cured of this insidious disease and still undergoing treatment aren’t surviving.  Don’t make it sound like people feel they do not deserve to be in a Gallery of Hope, because they are not cured.  They are the epitome of hope!  Just accept that every single cancer patient/caregiver/family member/ and everyone touched by cancer is facing every morning with the challenge of trying to live the best life they can.  We all have hope, which makes us the best survivors of all!  

    

CANCER IS LIKE VEILED SUNSHINE

My favorite meteorologist has a running joke with one of the anchor men on television about the use of the words “veiled sunshine.”  He thinks it is funny and teases her about it, while she laughs and uses the term often.

     It is an unusual term.  I also chuckle when she says the day will be partly sunny or partly cloudy.  Which part?  It can’t be at the same time obviously.  So is it sunny enough for the neighbors to use the pool, or too rainy for the baseball game?

     However, if you really think about it these are very descriptive of not only the weather – but of cancer.

     Every one of us has a life with ups and downs, shadows and sunshine, darkness and light, and sometimes on the same day.  I am an emotional person and after a bad day, I try to laugh and be happy when something funny happens.  I do not live in a tropical climate like Florida but in Northeast Ohio, which is one of the cloudiest areas of the country.  I have the dubious honor of living five miles from an armory that was built before missiles could be directed.  The reason is - we are so cloudy that the airplanes couldn’t see where to drop the weapons! The counter part  of living here is on sunny days my neighbors and I are all walking, biking, greeting each other, and most appreciative of the sun’s rays.

     My cancer is ongoing and I have been fighting it for nine years.  I have had the bad days, when the chemo has overwhelmed me and I have given up hope.  Then I have the good days, when it is in temporarily remission and I feel great like sunshine!  I think almost every cancer survivor goes through this.

     However, it is the veiled sunshine that we really think about.  The clouds are covering the sky, but if we peek really hard we can see the sunshine trying desperately to come through.  If one little cloud moves, the whole array of shining rays appears making us feel good. 

     This is the reason cancer survivors have hope.  We hang on to that little crack of sunshine to keep us going behind the gray and dreary clouds. I feel certain when my journey on earth is finished, I will see the rays of light.  I have friends who have had near death experiences and they describe the light and sense of peace vividly.

     Cancer and life is much like the weather.  We need to keep peeking for the rays of sun, and be certain the clouds won’t last forever.  Rays of light are important to all of us, and  “veiled sunshine” reminds us hope is always there.