CANCER AND LIFE ARE NOT LINEAR JOURNEYS

One of the hardest things to realize about cancer is that it rarely goes in a straight line.

Did you believe when you were young that life went in a straight line?  I sure did, and was very naïve.  I had my life all mapped out for me.  I would go to college, get my master’s in library science and get a job as a librarian.  I planned down the road to find my prince, get married and have 2.5 children.  (In those days of zero population growth we were told to have no more than two children). I would be a librarian for thirty years and retire with a good pension like my parents did.  I told a friend during my last year in college, I would get a job, a car, an apartment and go to Europe. She cautiously told me this might take a long time.

     Yeah – right.  Woody Allen formulated the quote “If you want to make God laugh, tell him about your plans.”

     Now at the age of 68, I look back and laugh along with God.  Life did not go in a straight line, but in many ways it went better with all my ups and downs.

     I was a librarian for 19 years before I made a career switch to being a rehabilitation counselor, because I wanted to work with people with disabilities.  I taught college for over thirty years as an adjunct, which I never knew I would enjoy so much! When I physically was no longer able to teach, I became a writer.  What is special is that each career segued into the next one.

     I didn’t get to Europe until I was forty, but have traveled to several places since.  I never met the love of my life, but have worked with children in most of my careers.  I figured since most of my relatives lived to be old I would too – until I was diagnosed with cancer.

     I also thought cancer was a straight line.  I thought people underwent chemo or radiation or other treatments and either got better or did not.  I was so wrong, and what made me think that cancer is any different than life?
     I was given a time limit to live and am past that.  I never knew one could be on chemo for as long as eight years.  Just when I thought I would always be on chemo, I have been off for almost a year. I have changed cancer treatments from oral chemo, to Vidaza shots, to Procrit shots and will probably undergo different treatments in the future.   I have visited the cancer center where I receive treatment ranging as many as five times a month to every six weeks. I have felt terrible, sick, better, good, but always fatigued.

     My emotions have run from elated, to depressed, to sad, to fear, to anxiety, to anger, to happy – sometimes the same week!

     Isn’t this like life? Our cancer journeys don’t usually go from diagnosis to treatment to cure, but back and forth just like life!

     We cancer survivors cannot expect a straight line.  Sometime all we can do is hang on for a turbulent, confusing, crazy ride!

VISION BOARDS FOR CANCER SURVIVORS

Vision boards are both therapeutic and fun for cancer survivors and everyone else!

 What is a Vision Board?  Oprah Winfrey explains it this way. “I was speaking with Michelle (Obama) and Caroline Kennedy and Maria Shriver –we were all doing a big rally out in California.  At the end of the rally Michelle Obama said something powerful.  I want you to leave here and envision Barack Obama taking the oath of office. I created a vision board.  I had never had a vision board before.  I came home, I got me a board and put Barack Obama’s picture on it, and I put a picture of the dress I want to wear to the inauguration.” https://www.makeavisionboard.com/vision board success

      I have read Becoming by Michelle Obama and did not remember it being mentioned.  I knew nothing about vision boards.  On a routine visit to my oncologist, she told me she was arranging a program and wanted me to come.  My sister was with me and knew all about them.  Together they gave me some ideas like bringing pictures of my beloved hearing ear service dog. I gathered pictures of several important events of my life, and then asked a friend to go with me.

     There were about 25 people including cancer survivors, my oncologist and her husband, hospital staff and families of the survivors including children.  Each of us was given a plain picture frame 8 ½ by 11.  Some of us had brought our own pictures, while on a long table were piles of magazines and more clip art pictures and slogans. The leader of the program explained what we should do and showed a video about this activity.

     I am not an artist, but a writer.  I honestly did not know where to start.  I was apprehensive, and just sat there stupidly for a few minutes.  I looked around and everyone else was busy.  My hearing ear dog was with me watching me expectantly.  I looked for scissors but there were pinking shears.  I asked my friend why they had those (she is a gorgeous seamstress) and she said to make the pictures prettier.  I grumbled a little bit because they were awkward to use, but they did make the pictures more decorative.

     I finally decided I could not be the only one in the room doing nothing.  What happened next is the great thing about vision boards in my opinion.  These boards evolve and create themselves with help from us!  As I looked over my items I realized what I wanted was to write more, travel more and to dream about more events.  I also wanted my dog’s picture on there.

     I took my travel pictures from Alaska and Canada as my background. I put the titles of two of my books on there.  The book Paw prints on my soul: Lessons of a service dog has a beautiful picture of my dog.  The other title Life is short – Eat the donut is my motto since being diagnosed with cancer.  I wrote out my goals of writing, traveling and dreaming.  I wandered over to the table and saw the words “Best Self” and added that.  Finally, I took a picture from Facebook of my oncologist who has kept me alive for 9 years.  I knew she also loves to travel and placed it next to the gorgeous Alaskan scenery of Glacier Bay.

     I sat there in awe.  I never planned this – it just happened.  The magic of the vision board had captured me! I looked around the room and every single person had a special board –even the children.  I only wish I had time to see all of the boards, but the meeting was finished so I left.

     I went home and Googled more information on this phenomenon.  One explanation was these are visual presentations of what you want to accomplish in your life. Some people call them “dream boards” because you are putting your wishes on paper.

     A plethora of ideas ranging from Health and Fitness to Goals to Passions to Home Organizations to Travel can be on boards.  These are just a few ideas. The boards help us to identify, visualize and reinforce our goals.

https://www.financiallyfitandfab.com/vision-board-ideas/

     I didn’t read this before I started.  I looked over my past and knew what I wanted for my future.  What better activity for cancer survivors?  We all have fears and concerns, but to put our dreams in pictures gives us the most important emotion of all – HOPE.

     My wise and wonderful oncologist knew this and gave every one of us hope that evening! 

     

IS IMAGINATION MORE IMPORTANT THAN RESEARCH?

Which is more important – research or imagination? Maybe they equally vital in survivorship!

 

I was shocked when I read recently that Albert Einstein, one of the biggest geniuses in the world, was quoted as saying, “Imagination is more important than knowledge.”  Yet he is known for his brains, his contributions and his inventions that changed our lives.

     Wait – but did he have to “imagine” these theories before he proved them? Of course he did, and that took being creative and well – imaginative.

     I remember the hardest part of writing my dissertation was coming up with a hypothesis and stating what I was trying to prove. After a researcher does that, then the next step is to prove or disprove the hypothesis.

     It is also a well known fact that many inventions are developed when the inventor is trying to create something else.  Alexander Graham Bell is known for inventing the telephone, when actually he was looking for a device to help his deaf mother and wife.

     This certainly applies to cancer. All the new drugs, clinical trials, immunotherapy and surgeries started with a dream.  The researchers had to think how these treatments would work to prolong or save our lives.  The imagination of these scientists is the reason many of us are still here today.

     And we survivors can imagine too.  I like dreams better than reality.  Reality is that there is no cure for my type of blood cancer.  Reality is I am past the expectant life span.  Reality is I will most likely not live to the ripe old age of my parents and grandparents.  Reality is I will always be on some type of treatment regime.

     Imagination is there will be a cure someday for this type of cancer.  Imagination is if I had been diagnosed 10 years earlier, it would have been a death sentence.  Imagination is more and more treatments are coming out.  Imagination is perhaps an immunotherapy will be developed for blood cancer.

     It is so easy to become discouraged, depressed and feeling ill all the time.  But when this happens cancer survivors can think about Albert Einstein.

     We can be knowledgeable, look up research studies, and looking for answers all the time.  Or we can use our imagination to say “Maybe – sometime- in my lifetime – there will be a cure.”  It is up to us to decide which we want to develop –knowledge or imagination.  Honestly – I think I do a little of both, and there is nothing wrong with that!  

ATTITUDE MAKES A DIFFERENCE!

The attitude we have makes a huge difference in our lives and with cancer it can help us to live longer!

 

I bought a doggy daily calendar online for 2019 with all different breeds of dogs.  There is a wise saying for each day pictured with an adorable dog.  I am truly a dog lover and enjoy motivational quotes, so this was a perfect gift to me.  By the way, I also gave a calendar to three of my “doggy” friends for Christmas so I do share!

     One day a yellow lab which looked exactly like my hearing ear dog, Sita, popped up with a famous quote by Winston Churchill.  “Attitude is a little thing that makes a big difference.”

     Ten little words that is ever so powerful.  I learned a long time ago that the happiest people are not necessarily the richest, for example.  I went to a very diverse high school with both rich and poor students and observed them from afar.  I remember going home and saying to my Mother that the rich kids were not the happiest.  As I grew and matured from facing my own demons of depression, I realized that it was not what happened to me that determined my happiness, but how I reacted. Several years of counseling helped me with this.

     But honestly – it wasn’t until I was diagnosed with cancer that I realized how much my attitude influenced me.  I started to blog and mingle with other cancer survivors.  What really made an impression on me was how positive people can be who had been suffering from cancer, assaulted with side effects, and undergone horrible treatments such as chemo and immunotherapy for years.  I knew one of the reasons they were living so long (besides getting wonderful medical help) was they had a positive attitude to face each new day without fear.

     I also observed my oncologist, who is one in a million.  She told me quietly one time that her patients seem to live longer than most.  I responded with, “Of course they do.  I am not surprised.  Your spirituality and healing shines through.”  Also – she spends hours every evening researching and trying to find new treatments for every single patient.

     Every type of cancer starts with malformed cells- sometimes just one.  But what happens after that is dependent on many factors.

     I do not mean to imply that attitude is the only factor, because I have lost too many relatives and friends who fought so hard and lost the battle.  Some cancers are just too far gone and the treatments are not working.

     However, if we are diagnosed with a cancer and have a chance, I believe attitude can be a huge factor.

     I have a dear friend who I have known for over 35 years.  She is such a role model for me.  She was born profoundly deaf, and had a difficult time in a hearing family who didn’t always understand her.  She went on to get her master’s degree in rehabilitation counseling, and spent a lifetime helping deaf and hard of hearing people to get jobs.  Two years before retirement, she collapsed in an unbelievable episode where her spinal discs gave way and she was permanently paralyzed from the waist on down.  Her response was “Well it isn’t my hands so I can still sign.”

     Despite many years of occupation therapy, physical therapy and other treatments, she has remained paralyzed for over a decade. Now she is often bedfast because of horrible wounds from sitting in her wheelchair too long.  I walked into her bedroom one day and she was making blankets for her church.  “This is something I can do from bed.”

     Every time I feel the least bit sorry for myself because of my chemo, I think of her being bedridden.  She was one of the most active people I ever knew. She was forced to quit her job and is unable to go to the church she loves.  Additionally, she lost one of her dearest friends from a sudden heart attack.  Yet her tremendous faith, determination and positive attitude keep her going. She always greets me with a smile and a heartfelt, How are you?”

     My service dog is almost 14 and has a limp, arthritis and problems getting up and down. But when it is time to leave the house and go in the morning, she jumps up and down in anticipation and excitement.

      Attitude doesn’t always help us to live longer, but it certainly can help us to live better.  It makes every day a gift we can enjoy for the next 24 hours.  It is amazing what I have learned from my doctor, my dog and my best friend!

    

 

 

GIVE YOURSELF PERMISSION TO RELAX!

I love to write – for me it is therapeutic and sort of like breathing.  Therefore I have written a lot of articles for Cure because for me it is well - fun!

     Cure has a wonderful Facebook page.  I follow it closely because I learn so much about different types of cancer, including mine.  I can also make encouraging comments to other writers, and there are wonderful contributors to this unique magazine!

     Another reason I check Facebook is to see how many “hits” I get on my articles.  I don’t do this for ego purposes (well maybe a little). However, I want to follow which type of articles readers like so I can oblige readers with articles that help them.  I have found some stunning results!

     I work diligently to write accurate and helpful articles on topics I know are pertinent to cancer such as anemia, peripheral neuropathy, side effects of chemo, and cancer causing insomnia.  These articles which I will call “research,” aren’t easy to write.  They are not research studies with participants, but a compilation of articles from reputable agencies which do conduct studies such as Mayo Clinic, Cleveland Clinic, Cancer Treatment Center of America, Cure, and many others.  I have to carefully check and recheck my facts, list my sources, include links and make sure I am conveying the correct information from the right source.  The editors at Cure double check and contact me if there are any questions or inconsistencies.  I appreciate this, because we all feel it is important to share accurate information.

     I find it easier to write “hopeful” articles, where I share what has helped me on my cancer journey.  I want these to help others.  These include topics such as dealing with grief, how hope is around the corner for new treatments, and questioning if I will reach my goal.

     One agency, AAMDS, has been pulling out an article once a month written by me for their newsletter.  The senior editor told me the readers they have want the research type of articles more than the psychological.  The reason for this may be after a person is diagnosed with a specific and rare type of cancer such as MDS, people are constantly searching for new treatments, cures and doctors to help.  Occasionally I receive welcome messages through my website wanting more information.

     However, I also feel we survivors need reassurance.  Honestly, I still feel guilty for not doing what I did before my diagnosis. The articles that I read and “speak” to me are ones where writers talk about finding balance and trying to parcel time to get the most important things done.  We all struggle with this, but when our health is at stake it is even harder.

     I truly realized this when I browsed through and realized the article I wrote titled “The Art of Napping” had 135 hits!  I compared this to “Anemia and Cancer,” which received 43.  When trying to analyze why it began to make sense for me.  These two conditions are intertwined.  Because my blood counts are constantly low and with the chemo in my body, I feel exhausted and need naps!  But some magazines and writers leave out the psychological component and only talk about the causes of a condition such as anemia. What we really need is reassurance that it is OK to take naps!  And I truly have learned this from my “furry friends,” my cat and dog, who drop down and nap every afternoon whether I do or not.  Sometimes animals are smarter than people.

     More and more oncologist and researchers are realizing that we all want to live longer, but we want to live better.  My oncologist I met a couple of months ago at the Cleveland Clinic impressed me when he said, “I want you to live a quality of life, not just length!”

     So we writers should continue to tell our readers it is OK to nap and not to beat yourself up.  Napping enhances the quality of life!

     I will continue to write both types of articles.  I will do some research, but also talk about balance and making life better.  The wonderful thing is Cure Today publishes both types of information and knows how important the psychological is too.  We all need to know how to take care of ourselves, succeed in balancing our lives, have quality of life and not feel guilty!  It is a huge undertaking and one we all work every single day to achieve. We also know that some days are better than others!

 

CANCER AND ANGELS IN DISGUISE

     I have been asked several times whether I believe in angels, and I do.  I remember my Mother telling me that my sister was a preschooler when she insisted she saw an angel.  My wise mother never attempted to dissuade her.  How do we really know that angels don’t appear to innocent children who do not doubt and are open?

     However, this is not about those kinds of angels.  I want to talk about the angels here on earth that every one of us cancer survivors have (and others too).  Sometimes we aren’t even aware because they are so quiet about what they do.  Or we may be so upset and self absorbed with our illness we don’t see it.  We should never take them for granted, but we do!

     When I was having trouble understanding my first oncologist because of a heavy accent, I asked a friend to accompany me.  She was there to hold my hand when I was told my life span was around 104 months.  She went with me to a second more supportive doctor; until I assured her I was comfortable being alone and could understand this doctor.  This wonderful friend went with me to three different medical centers, until I found one that gave me hope.  She has been with me to all my bone marrow biopsies.  Every step of the way she has been like a sister to me.

     I have another friend who has cleaned and helped me out for years.  She told me she would take time off work if needed to take care of me.  She is like another sister.  I have a cousin who drove me to chemo, cooked for me, and stayed with me through some rough days when I needed her while adjusting to a new treatment.  I had two men from my church that came on one of the hottest days of summer to install a ceiling fan, because I was so hot and miserable from the chemo.

     When I had a recent downturn on my cancer journey, people from my church gathered and sent wonderful cards to me – some of them daily. I have other friends who have brought me soup and food when I was too tired to cook.,  A neighbor walks my dog for me when I have my bone marrow biopsies.  Another friend from church made me a beautiful blanket, so I would know I was warm and loved.  My sister lives out of state, but e-mails me daily and visits me monthly with love and encouragement.

     My oncologist and the nurses at the medical center treat me with compassion and respect, and have helped me through so many rough patches. To me they are all angels.  My Facebook friends are always encouraging and helping me out with their positive messages. Then there is my minister, who supports me when I sob and rail at how unfair this all is. My church and many other people assure me that I remain in their prayers.

     You see, these aren’t the angels who fly through the sky with halos and wings.  Although I do think they might be like Jimmy in the movie “It’s a Wonderful Life,” and will earn their wings in another world.   But these people are all angels dressed in everyday clothes. I am convinced that every one of us has angels, but don’t think about it.

     My hope is maybe I can pay it forward. If I try to be encouraging, , send cards,  listen to people in pain, and think about others, I can be an angel in disguise to someone else. In this tough world we need all the angels we can get!!!

 

 

ANEMIA AND CANCER

You are trying to climb an easy flight of step that used to be a breeze.  Now you are hanging on to the rail, experiencing shortness of breath and feeling like a you are running a marathon.  You wake up and it seems like a heavy blanket is on top of you, and to move any part of your body is a major achievement. You go out with friends for lunch and suddenly excuse yourself.  You drive home and climb into bed or on the couch to take a nap.

     What is happening?  One diagnosis can be anemia.  American Cancer Society states the reason is your blood has too little hemoglobin (HGB) which is the part of the red blood cell (RCB) that carries oxygen to all the cells in your body. https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/low-blood-counts/anemia.html                                                                               

     Some of the symptoms can include a fast heart beat, shortness of breath, trouble breathing, and dizziness, chest pain or swelling.  Unusually pale skin is a huge red flag and my sharp oncologist can tell by looking at me if I am worse.

     The most telling issue for me is the extreme tiredness.  Anemia is so intertwined with cancer that every patient should know about it. Everyday Health cites that almost all patients receiving chemotherapy are mildly anemic and 80% develop a more serious problem. https://www.everydayhealth.com/anemia/anemia-cancer-link.aspx

     So why does this impact us “lucky” cancer survivors?  Possible blood loss from gastro intestinal, urinary tract, male genital, head and neck and vaginal cancers can be linked to anemia.  Anemia can also be the result of the treatment of the cancer itself.  Other culprits can be blood loss, low iron level, or problems with the blood cells being developed by the body. Other diseases such as sickle cell anemia can cause serious problems.  If the cancer survivor has had certain chemo drugs called platinum based chemotherapy there is a risk of damaging the kidneys.           

https://www.cancer.net/navigating-cancer-care/side-effects/anemia

     The reason for me is obvious since I have a cancer of the bone marrow. I have Myelodysplastic Syndrome, but Lymphoma, Leukemia and Myeloma also cause anemia because the marrow is not producing cells correctly.

     I never knew how important the bone marrow is and why.  Cancer.Net explains that the bone marrow is a soft tissue where the cells are made.  A hormone called erythropoietin “tells” the body when to make the red cells which are housed in the kidney!  So any damage to the bone marrow or kidneys can cause the anemia. Radiation and chemo therapy may also damage the bone marrow.  Very Well explains that chemo attacks all rapidly growing cells not just the cancer so the red blood cells, white blood cells and platelets are affected.  This is why sometimes chemo has to be delayed. www.https://www.verywellhealth.com/blood-cancer-and-anemia-2252418. 

     Diagnosis of anemia is done with blood work and bone marrow biopsies.  Once the doctor has confirmed the anemia, the treatments may vary since the cause needs to be determined first.  The focus is usually raising the hemoglobin level to 12 for woman and 15 for men.

     Diet is very important, which is ironical.  I don’t feel like cooking and I make it worse by not eating correctly sometimes.  Some of the food is easily prepared like vegetables, dark greens, sweet potatoes, dried apricots and peaches, meat and fish. Bread, cereal and pasta can also help with fatigue.

     If the HGM need to be raised quickly, a blood transfusion may be needed.  Iron supplements and infusions can also help.  Epoetin alfa (Epogen, Eprex, Procrit) or darbepoetin alfa (Aranesp) may be prescribed to stimulate the red cells much like the hormone in the body.  One caution is that these medicines can cause blood clots easily, so if any sign of redness or swelling emerges, call the doctor or go to the Emergency Department immediately!

     In summary, anemia is common with cancer.  Do not ignore the symptoms. My doctor knows if I tell her I am unusually fatigued to draw blood right away.  Treatments are out there and you can help with diet.  For me personally, light exercise also helps me to feel better and get moving.

     As for the fatigue, sometimes you just need to tell your friends and family what is happening.  I was at a church function with people I love last week.  I started fading fast and explained what was happening.  They told me to go ahead and go home.  I climbed into bed right away and a nap does wonders. My article “Cancer survivors and the art of napping” is the best solution I have.  Nap away and carry on!

HOPE IS AROUND THE CORNER FOR CANCER SURVIVORS

I was feeling upset and depressed.  I had a terribly insensitive oncologist early in my cancer journey who told me that the average length of time for this type of cancer was 104 months.  The worst of it is she stated this with same emotion as asking me if I wanted a cup of coffee.

     Physically, I was feeling rotten.  The anemia was worse and I felt like I had been hit with a ton of bricks.  My last bone marrow biopsy and blood work was haywire.  I described to my physician that I had to hang on to the rail and pull myself up on each step of the 18 steps to my second floor apartment.  My 14 year old service dog (which is almost 100 in human years) was bounding to the top and staring down at me like why is it taking you so long!  In the morning I would get up feeling like a huge blanket was weighing me down.

     I had been feeling poorly for quite some time, and the tests simply confirmed it.  Worst of all was the nagging thought at the back of my mind that I had reached the time for my life expectancy.  To summarize – I was anxious, concerned and doing all that worrying I try to tell others not to do.  Admittedly, I am the world’s worst worrywart, but truly have tried to take it day by day since my diagnosis with this insidious disease.

     Then entered my terrific oncologist. She did not give me a bunch of platitudes and tell me not to worry, which would have been futile at that point.  She took immediate action and started Procrit shots to get my red blood cells going and help the anemia.  Next, she referred me to a specialist at the Cleveland Clinic located about an hour from me.  I asked her what she expected from them.

     She was honest with me as always.  She explained the clinic has access to new clinical trials and data bases she didn’t, and she wanted a second opinion.

     Miraculously, I got an appointment two days later.  I canceled an appointment for a massage for my beloved service dog knowing she would understand!  Yes – my dog often gets better care than I do.  A friend of mine and I went and met with the director of the Leukemic Center at the clinic.

     This very well known doctor was a unique combination of both knowledgeable and compassionate. First of all, he told me I was already responding to the Procrit shots and my numbers were up.  Bear in mind it can take 4 – 6 weeks for the improvement and mine was in two days!  What an amazing phenomenon!  I think that my body was craving the jumpstart to get the red blood cells manufacturing again.

     The doctor then told me that the Procrit can last for up to a year.  Best of all, there were at least three new clinical trials that are coming out in the next year.  One of them is the first drug ever developed specifically for my rare type of Myelodysplastic Syndrome!  Prior to this, all the drugs prescribed have been for other blood disorders like Leukemia and Lymphoma.

     I sat there speechless (which for me never happens) and stunned.  In other words, I was to go home, be taken care of by my local oncologist and when the shots no longer worked – call him.

    My emotions were running a gambit from shattered, humbled, discombobulated and thrilled all at the same time. Now I saw a chance for a new lease on life.  The timing of these new drugs to appear was impeccable. I had thought my luck and wonderful medical care was no longer helping, but behind the scenes they were.

     I do believe in miracles. They happen every day from the beautiful sunset, to the birth of babies, to the near death experiences described by my friends.  I think we are usually too busy or preoccupied to see them.

     I also forgot one very important emotion in my distress.  I have said from the beginning we should never give up hope and I had for a little bit.  All of us authors have a favorite article we have written and mine is “With cancer there is always hope. “ I realized once again I need to reinforce to myself and to other cancer survivors that hope is just around the corner when we least expect it.  We have to hang on and try to never forget that. Sometimes it is all we have and sometimes it is enough.    

COPING WITH THE TIDAL WAVE OF CANCER

By Jane Biehl PhD

 

Like many people I was very naïve about how much cancer would change my life.  I thought that one got cancer, was treated and afterwards was “cured” and moved on.  Of course I knew there were others who passed away from this devastating disease, and have lost dear friends and family to this vicious disease. What I never realized was that once we are diagnosed with cancer, our lives are forever changed.

     There are more treatments for cancer now than ever before, including immunotherapy, and new chemo medications are being used all the time.  Radiation treatments have eradicated some cancers, along with more precise laser surgeries to target tumors.  Oral chemo, IV chemo and shots are all on the increase.  This is a positive step because many of us are living a lot longer and feel blessed.

     However, the adjustment to various kinds of chemo over a long period (or sometimes short period) of time is difficult.  Many people are undergoing radiation plus oral chemo and surgery.  What almost all cancer survivors are discovering is that treatments never go in a straight line. We seldom move from diagnosis to treatment to “cure.” Many of us are continuously on chemo or immunotherapy, except for brief respites.  We may go for treatments daily, weekly or monthly.  We constantly are being monitored by MRI’s, scans, blood work and bone marrow biopsies.  Chemo side effects are numerous, while some of our organs are permanently damaged.  I truly believe that cancer treatments can be compared to the stages of grief.  Many of us know these plateaus of grief outlined by Kubler Ross including Denial/Anger/Bargaining/Depression and Acceptance.  I have written about the idea these stages are not necessarily in this order and that grief often doesn’t go completely away.  We still miss our family and friends on certain anniversaries when these painful memories crop up at the most unexpected times.  I still mourn my life the way it was before my cancer diagnosis.

     Recovering from cancer and its aftermath is like grief; undulating, tantalizing, flirting, teasing, and rippling.  It is always changing. We never can predict the results of another scan or bone marrow biopsy or blood test. The symptoms often can be unpredictable, sneaky and hiding like a shadow.  The side effects can be horrible some days and not so bad other days. Our energy level ripples like a tide, sometimes going over rocks and barriers in the path and being low, sometimes moving along at a great clip and going well. 

     Our days are filled with chemo appointments, doctor appointments, scans and biopsies.  One survivor said she looks at cancer as a full time job and she is right! Nothing- absolutely nothing- does not go in a straight line nor should we expect that. 

     In some ways dealing with a chronic disease like cancer is very different than grieving a loved one.  If the person is gone, we do know deep down that they are not coming back to earth.  Cancer and chronic diseases, however, are sneaky like a tide of water, lurking, and hiding, waiting to attack and then receding.  It reminds me of low and high tides in many ways.

     The problem is our emotions waver along with every single change.  Most people are afraid of change, and I find the older I am the harder it is.  But we are now experiencing every single emotion in existence such as being happy/sad/relieved/scared/excited/tired/thrilled/confused and sometimes all of them the same day!  We also can experience these emotions over and over again.

     There are doctors, nurses, navigators, family and friends to help us with the physical changes and can bring food, drive us to doctor’s appointments and help us in other ways.  But we are the only ones who can control our emotions.  Sometimes we don’t control them and that is OK - screaming and crying is permitted!

     Yes, a cancer diagnosis changes us forever.  The cancer burrows, hides, retreats, becomes aggressive and then rears its ugly head like a snake.  Cut off the head and it comes back.  We need to give ourselves some slack if we can’t keep up with an ever changing life and ever changing emotion.  We weren’t meant to have to do this.  However, years ago we probably would not even be alive and feeling anything, so we need to take a deep breath and cope the best we can.  That is all we can promise ourselves and it is enough!