BEING OFF CHEMO MAY BE TEMPORARY - BUT SO IS LIFE!

As many of my readers know, I have a blood type of cancer and thought I would be on chemo without a break for the rest of my life.  We all know that putting chemo into our bodies is pouring poison into our systems, and the body being very smart will try to reject it.  Side effects occur with almost every type of invasion, whether it is infusion, oral, I.V., shots, or any other attack. Radiation is also detrimental to our systems and surgery is an assault. We tolerate it because we will do anything to stay alive.

     I have been on chemo constantly, and feel fortunate not to have the surgery and radiation to contend with.  But it has been eight long years; six years of oral and two years of monthly shots in the stomach. I have had many side effects while more keep cropping up every day.  I thought I would always have to suffer with these nasty ill effects.

     My understanding oncologist has taken me off for a few weeks when I traveled and went on cruises.  Allow me to be vulgar when I say that diarrhea on a ship is not pleasant!

     Recently, she gave me a wonderful gift.  I have bone marrow biopsies every six months.  Since the number of cells compromised did not change over a year, she took me off the chemo for awhile. I tried to imagine what not having the side effects would be like. When I recently told my pharmacist, I had chronic diarrhea for eight long years, he just shook his head.  My white blood counts have been alarmingly low, which of course increases the risk of infections.  As all of us cancer survivors have learned – sometimes the cure is worse than the disease!
     I sat there stunned.  I was thrilled, but afraid to be happy.  Would the cancer get worse? What would happen to me?  How can I process this scary new freedom?

     My doctor has an uncanny ability to “read my mind.”  She hastily explained this was only temporary.  She will continue to see me every month and do monthly blood counts. She warned me that this all could go south very quickly, but she will watch.

     Honestly, this fantastic woman has become my friend.  How can you see someone at least once a month for eight years and not become close?  Of course we never violate the patient/doctor relationship, but I confide things to her I never have to my friends.  In turn, I ask about her family and her vacations.  I would miss seeing her for sure!

     I left her office reassured and knowing that I will be monitored.  Like all cancer survivors, we learn to know our bodies very well and when something is “off” we know it.   I would call her immediately if anything changed. 

     Meanwhile, I am enjoying this reprieve! I shared the good news with my family, friends, fellow survivors, church congregation and on Facebook. I was overwhelmed by the positive good wishes and prayers I received from so many people.  I am sure these positive affirmations had a lot to do with my cancer not worsening…

     The side effects are slowly dissipating, but some of them are still there.  The hearing loss is permanent, the chemo fog drives me crazy, and the muscle aches are horrible.   But I feel energized in the morning.  I have a new spring in my step and a smile on my face. When people ask me how I feel, I tell them I have never felt better.  I have been told I look wonderful and lap it up!

     However, this nagging thought keeps lurking in my brain. “it is only temporary…it is only temporary…it is only temporary…

      After awhile I thought to myself – Damn it - life is temporary!  How many people do you know whose life was snuffed out in an accident (too many) or are slowly deteriorating from a sudden illness or disease. We are supposedly fine one day, and sick or disabled the next.

     Do we sit there and think every morning that being well is temporary?  I hope not, because it takes the joy out of living that day.  I do think we need to remind ourselves that we aren’t going to be here forever and be good to one another. Every one of us has a mission to complete.

     However, we still go on living and I need to do that too. I shouldn’t wake up thinking – is today the day I go back on chemo?  I need to be thankful I am not on chemo for one more day.  I allow myself to rejoice and enjoy my new life.

     I hate the thought of going back some day to the poison, and know how awful the side effects are.  I will have to handle it like all of us do. I did it for eight years and will again.

     Meanwhile, I don’t want to waste any time.  Chemo – and life is temporary - but let’s have fun in the meantime!    

  

CANCER SURVIVORS – DON’T BLAME YOURSELF!

When I was a clinical counselor and rehabilitation counselor, I worked with clients who had low self esteem.  In many cases, terrible things had been said and done to them including physical and sexual abuse. For persons with a disability, society is often harsh when one is labeled “different.”

     One of the first things I would say to them was ‘You have just spent 20 minutes telling me terrible things about yourself like you are ugly, or lazy, or stupid or a failure.  Please tell me this – would you say these things to a good friend?”
     Typically their answer was, “Of course not, because I would lose that friend.”  My reply would gently be, “Then why do you do this to yourself? 

      A great deal of my work dealt with teaching people to treat them as well as they treated others, and try to raise their self esteem.

     One of the first of many “gifts” my terrific oncologist gave me was to tell me “There is nothing you could do to keep from getting this cancer.”  To my knowledge, she doesn’t have a PhD in Psychology, but has something even better – a tremendous sensitivity and life experience in treating thousands of cancer patients and knowing their fears.  I have an immune deficiency so rare and a cancer so rare that researchers don’t really know if the deficiency caused the cancer, but I think there is certainly a link.  I am overweight and have been self conscious for years, so I especially needed to hear this in order not to berate myself over and over.

     Cancer survivors have tremendous issues and fears to go through after an initial diagnosis.  I would like to personally tell every one of them face to face not to add to their distress or lose sleep over self blame. 

     What does cause cancer?  Not even the experts agree.  Please understand I am NOT condoning smoking like a stove pipe, never exercising, eating all the wrong foods and not taking care of you.  But there is a middle ground here.

     http://www.aicr.org/enews/2019/02-february-/enews-myths-and-facts-cancer-prevention-month-quiz.html does state that eating, maintaining a healthy diet, not smoking and being more active are the most important ways to reduce RISK of cancer. Of interest is only 5-10% of cancers are caused by genetic syndromes, so if your parents or grandparents died of cancer you may have a chance to not develop it.  They say that about 40% of cancers are preventable. 

     On the sensitive subject of being overweight the, American Cancer Society states that worldwide only 3.9 % of cancers are due to being overweight - which means 96.1 % are not.  The World Health Organization is attempting to take some measures to help, such as limiting portions and passing laws forbidding Trans fat in food.     https://www.cancer.org/latest-news/almost-4-percent-of-cancers-worldwide-due-to-excess-body-weight.html

     Susan Swain wrote a very informative article where she interviewed Dr. Pamela Crilley, the chair of the medical oncology department at the Cancer Treatment Centers of America and Dr. Narjust Dumas, the chief hematology and oncology fellow at the Mayo clinic.  https://www.msn.com/en-us/health/medical/16-things-youre-getting-wrong-about-cancer-according-to-experts/ar-BBTje3D

Dumas states that it is a myth that people who make healthy choices don’t get cancer and says: “Cancer starts with regular cells that went the wrong way.”  If a person ate 4 pounds of kale a day that person may still get cancer! In her opinion cancer is a confluence of bad luck, genetics and environmental factors.

     What about smokers who get lung cancer?  Let me say up front that I detest smoking and even being around it really bothers my asthma.  I would never advise a young person to start.  For people who have smoked for years, it is easier said than done to quit.  In my addiction classes in graduate school, I found out tobacco is more addictive than cocaine.

     Crilley does make the point that if you do not smoke, this doesn’t guarantee you will not get lung cancer.  Many years ago my grandfather died of lung cancer, most likely caused by working for the railroad over 40 years and inhaling the terrible smoke from the engine before diesel. Crilley points out lung cancer could be random or other environmental factors.  She cites a study that persons who developed lunch cancer had high incidences of mutated genes and abnormal proteins in their bodies.

     I firmly believe this is the only body we have and we should treat it like a temple.  That includes taking care of it the best we can. I find exercise is one of the best things I can do since I started in 1993, and never stopped even through my chemo and treatments.  I  also do it because it makes me feel good!

     The point I am making is the jury is still out on who gets this insidious disease called cancer and who does not.  We need to take the best care of ourselves we can.  But we also need to be gentle with ourselves.  Do not waste time berating, blaming or beating up yourself or your loved ones up.  Try to do all the right things like watching your diet, not smoking and exercising.  But don’t “guilt” yourself because all this does is mess with your mind and limit your chances for overcoming cancer. We all know how important the body and mind connection is – so cut out the self blame!