CANCER SURVIVORS AND THE ART OF NAPPING!!!

I am so fortunate to have had my hearing ear dog, Sita, by my side for eleven years.  Not only has this marvelous creature changed my life and made me feel safe by alerting me to noises, but her warm and sweet personality have guided me on my cancer journey. One of the lessons she has taught is how to take naps gracefully!

   I have been battling cancer for over eight years now.  Sita is around 14 years old, which is unusual for a larger dog like a yellow lab.  I also have an adorable little black rescue kitty named Cesar, who is 10.  I tell them we are all getting older together!

     As any cancer survivor, who has been on any kind of treatment knows, fatigue is an unavoidable side effect.  When one has been on chemo as many years as I have, the fatigue keeps increasing rather than decreasing.  The cancer also causes one to be tired, and for someone with an incurable cancer, the tiredness never leaves.

     When I was first given my service dog, I was working two jobs and we would both be gone for hours at a time.  My mother was still alive and we would go out to eat with her afterwards, often getting home at 11:00 at night.  After my mother passed – she died a year after I got Sita – we would go to a local playground where Sita would run and run.  She would sniff and smell and walk all over while I laughed delightedly watching her.  I even purchased a blinking collar so I could see her in the dark.

     I also enjoyed hiking over the playground and just being outside in the rain and snow and sun.  Sita met another dog, a gorgeous black lab named Max, at the playground, and they would frolic together almost every day.

     The years went on and life changed dramatically for us. I was diagnosed with cancer and on constant chemo, since it is a blood cancer.  I quit one job and then the other as I became weaker.  Sita walked less and less as she aged, until she developed arthritis and had elbow surgery. 

     Sita is now content to go out every day, have lunch at a local restaurant, especially on a patio when weather permits, and go home to her special arthritic bed.  Meanwhile I have developed neuropathy from the chemo and we both have to be careful on stairs. We are a sight going up and down together as a couple of “old girls.”

     Meanwhile, Cesar used to tear around my apartment and actually broke a couple of lamps!  Now he goes out on the patio in the sun, or stays inside when it is cold, and lays on his condo (or my bed) for hours. 

     When the fatigue hits seemingly out of nowhere, and I cannot move any longer, I go to my bedroom.  Cesar curls up between my legs.  Sita lies on her huge bed at the bottom of mine and we all nap together.

     They obviously feel no guilt or pangs of conscience that they should be doing more like I often do.  Sita has served me as a service dog for 11 years, when the average length of time for a dog to serve is 6-8 years.  She knows her job is almost finished, and it is time to rest.  Cesar also knows he is not any younger.  They both accept age with grace and dignity.  I am older and have cancer!  If only I could do the same and not feel quite so guilty.  Deep down I know I should!  Animals can be smarter than people and we can learn from them.  

     Excuse me – we are all going to take naps now!

WILL I REACH MY GOAL: PONDERING LIFE AS A CANCER SURVIVOR

I have met many fantastic cancer survivors who have truly inspired me on my journey.  When we first meet, we may briefly say how long the doctor’s prognosis is for us to live.  Then we casually move on to “But I am going to beat those odds.”

     However, if we are honest, I think most of us wonder deep down if we are going to live long enough to see the next grandchild, to attend an important wedding or anniversary or to finish a project.

     I wrote about Viktor Frankl in another article titled “With cancer there is always hope.” He was imprisoned in four terrible Nazi camps during the holocaust.  In his book Man’s Search for Meaning, he writes that the people who survived the horrible conditions were generally the ones who had a reason for living such as loved one, a career or a goal.  His goal was to write a book, which he did.  I think it is no coincidence that every cancer survivor I have met talks about a family, friends, jobs and a reason to keep going.

     I have pledged to always be honest with my readers, and have to admit that I sometimes have doubts about my projects and whether I will finish them or not. I have written three self published books that were dear to my heart.  One winter evening I was watching one of those cheesy Hallmark movies. Please give me a break – it was a foot of snow and zero degrees outside and of course I knew the predictable ending!   In “A Winter Proposal” a writer was upset with a bad review of her book, and her boyfriend made a very profound statement. “If it is in your heart – no one can touch it.”

     I thought about that comment.  This is the reason writing and my projects are important to me.   I never intended to make a fortune, but wanted the stories to get out there for other people to read.  Two of the books are on my beloved service dog and a third on my cancer journey.

     Presently, I am writing the most difficult book of all for me both personally and professionally.  It is an autobiography about growing up hard of hearing in the 1950’s and 1960’s, before services were considered for children with disabilities and discrimination was blatant.  I continue chronicling my journey of learning sign language, making deaf friends, and undergoing a career change because of the many great deaf and hard of hearing people I met! I went on to work with people with other disabilities, including seven years of working with blind people, who truly wove themselves into my heart.  I then explain what it was like losing more of my hearing from chemo and how I try to live with cancer.

     This has been a laborious and difficult book.  There are many painful memories, and I have so much to tell that I am trying to weed out what may not be important or helpful.

     Therefore, writing this story has not gone fast as I had hoped.  Deep down I ask myself daily if I will have the time and energy to finish this.  As one of my friends pointed out.” You are the only one who can write this.”  We hear about authors who pass away and their works are picked up and published later – but this feels different somehow.  A lot of it is still percolating in my head.

     I know all of us must have these doubts. The very passion that keeps us going scares us.  What if I don’t finish? What if I lay on a deathbed frustrated with a manuscript at home no one has ever seen? What if all this writing is for nothing?  For others the question may be what if that wedding or graduation is never attended?  What if I do not see my children or grandchildren grow up?

     But then we all have to remember that what the author Robert Updegraff wrote.  “Happiness is to be found along the way, not at the end of the road, for then the journey is over and it is too late.”

    Ultimately, no one knows when we will draw our last breath.  But we make a journey of faith, follow our passion, pray we will accomplish our goal, and enjoy every minute we are alive.  And that  has to be enough.

 

 

 

 

CANCER AND PERIPHERAL NEUROPATHY

I keep fumbling and dropping lids to water bottles and other items.  When I climb the stairs to my apartment, I often feel like I am going to fall backwards and grab the rail.  If I go out in the cold air, my fingers tingle for hours afterwards.  What in the world is wrong with me?

          According to the National Cancer Society, the definition of peripheral neuropathy is “A set of symptoms caused by damage to the nerves that are away from the brain and spinal cord called peripheral nerves.”  If you have this condition you may experience tingling, numbness, weakness, less ability to feel hot and cold and other symptoms.  The cause is often chemotherapy and called chemotherapy-induced peripheral neuropathy. (CIPN).

     This condition can also cause dizziness and constipation if it affects any internal organ.  Additionally, muscle weakness, cramping and spasms can occur if the muscle becomes involved.

     According to The National Cancer Institute there are three different kinds of neuropathy.  The first involves damage to sensory nerves which help you to feel pain.  The second is the motor nerves which helps your muscles to move.  The third is autonomic nerves which control blood pressure, digestion, heart rate and other functions of the body we do not think about but that work automatically.

 

     Neuropathy can be caused by tumors, cancer treatments or other health conditions. Just like any disease, other medical conditions such as diabetes, immune systems or thyroid problems exacerbate symptoms for cancer survivors.

     The more research I did, the more things fell into place for me personally.  I do have trouble swallowing sometimes.  I have an immune system problem and hyperthyroidism. I was on Thalidomid ( thalidomide) for many years.  I am a walking classic for a patients suffering from neuropathy.  And no one ever told me!

    It’s important to discuss any neuropathy symptoms with your health team.  Your There are some things that can help alleviate but not necessarily eliminate the problems are shared by The National Comprehensive Cancer Network (NCCN) at  explains that certain antidepressants can help by decreasing the chemicals in the brain that transmit pain signals, along with muscle relaxers and anticonvulsants.   Only your doctor can assist you with these prescriptions. There are some dietary supplements such as Folic Acid and Magnesium that may assist, but you need to ask your health care provider before using any of these.  Just because these are available over the counter does not mean they may not be dangerous when interacting with other drugs!  The University of Iowa also stated massage can be helpful with some patients by increasing circulation and providing relaxation, but for others massage could be harmful. You know what I am going to say – check with your doctor!

     Sometimes, if the pain from neuropathy is very serious, the doctors can prescribe pain relievers, but remember these can cause other problems.  There are also topical anesthetics and the one my doctor prescribed is wonderful!   Occupational or physical therapy may be another consideration for you and your doctor to consider.

      According to breast cancer.org problems can start after treatment begins and can worsen.  They warn if it is not treated it can become a long term problem. 

     Finally, USE COMMON SENSE! All of the above articles mentioned taking a hard look around your home.  Throw rugs need to be thrown out – they are a true hazard!  Keep hallways uncluttered and have night lights everywhere.  Grab the rails when you go up and down steps and do not try to carry everything at once.  Yes I used to do that! Use skid free showers and mats.  Liquid soap is better than slippery bar soaps.  And no more flip flops – sturdy shoes need to be worn outside always to prevent falls.  I need to be careful not to be tripped by my dog and cat and try to have a surface to grab at all times.

     Like every other cancer condition, each one of us is an individual.  For example, I have hypothyroidism, fibromyalgia, and an immune disorder and have been on Revlimid for a long time.  The oncologist and family doctor need to cooperate for you to receive the best care and I am so fortunate because mine do.  They work together on the thyroid medication and other problems, because I consult with both of them.  I am unique with my medical problems and so are you.  You need to let your doctors know what is happening before they can help you!

     Like so many other conditions and side effects from cancer, the neuropathy often cannot be cured – but can be helped.   Be careful and informed.  And again look around your home for all hazards – it may just save your life!

 

 

 

 

 

 

INSOMNIA AND CANCER

I am a person who always was able to sleep and would generally be out before my head ever hit the pillow.  Now I found myself tossing and turning for hours at a time.  I would try reading, but then would just delay my sleep longer.  Ironically, the cancer and chemo were making me even more tired, and I needed the sleep more than ever so my body could heal.  What was happening to me?

     I soon figured out I had insomnia. The American society of clinical Oncology (ASCO) defines it as “The experience of having trouble falling asleep or staying asleep during the night.”

     ASCO goes on to say that most people experience insomnia at some time in their lives, but the risk increases with cancer.  This has been a long hard road for me since me since I was diagnosed eight years ago. We all know as cancer survivors when we lay in bed unable to sleep we begin to worry about the cancer, treatments and what the future holds for us.  I got less than two hours of sleep from insomnia before my last bone marrow biopsy and my adrenaline was so high that the usual sedatives I was on did not work to put me in a twilight zone.   That was not fun!    

    Sadly, I made a huge mistake that I want to prevent others from making.  Doing research, I found a statement that hit me like a ton of bricks.   Paula Schlembach M.D., of the University of Texas MD Anderson Cancer Center, “Don’t hesitate to discuss insomnia and other sleep issues with your doctor.”

     I have the most compassionate oncologist possible, and she always asks me if I have any questions.  I complain (yes, complain is the word) of fatigue all the time.  But I waited over five years to mention the insomnia. She then informed me that many cancer patients suffer from insomnia, and she could prescribe a medication to help.  She explained that with the side effects and anxiety of having a cancer diagnosis, insomnia is common.  I use the medication sparingly but it really is a huge help - especially the night before a bone marrow biopsy!

      Cancer survivors need to realize that sleep increases the immune system to fight infection, which is extremely important.

     I cannot summarize all of the treatments and effects of sleep disorders in this article. However, for serious ones like sleep apnea, which causes the patient to stop breathing for 10 seconds or more at a time, a referral to a sleep clinic is important. 

     I did cull out some helpful information to share for insomnia in general.  Since people with cancer often are prescribed different medications, many of these cause insomnia.  The patient should always read the information provided with each prescription.  Also – keep it on file for future reference because you may not experience symptoms immediately.  I also think to myself that there may be future meds that are not compatible with each other. I am so guilty of tossing these brochures in a wastepaper basket, but will not do this anymore!     Another suggestion I didn’t like was to avoid caffeine.  I truly am the queen of caffeine and it got me through many long nights writing a dissertation. However, I was much younger and still could sleep after drinking it all night long.  However, it takes up to eight hours from one cup of a caffeinated beverage to wear off.  Avoiding caffeine eight hours before bedtime is doable even for an addict like me!

    We each need to find an outlet to alleviate our stress, whether it is light exercise, yoga or meditation. Sometimes, these are offered in the LIVESTRONG programs at your local YMCA. It also helps to talk to a friend, and I have broken down more than once to cherished people who allow me to vent.  It is ok to be vulnerable, which I wrote another article on!

     My oncologist has mentioned side effects from chemo.  Intractable diarrhea and chronic urination have been terrible side effects for me personally.  This is another instance where the doctor/patient relationship is invaluable and cancer survivors need to confide in their oncologists.  That person in turn can refer the patient to a specialist, or help with medications to treat symptoms.

     Finally, most cancers have pain associated with either the cancer or treatment.  Dr. Schlembach encourages patients to tell the doctor about any pain.  I have to add something to this.  A wonderful ob/gyn told me after a hysterectomy many years ago to NOT be brave and reject pain meds. She explained these help with actual healing.  I have never forgotten that advice and we need to forget about being warriors when pain rears its ugly head.

     In summary, insomnia is an unavoidable side effect for us.  But it can be helped by confiding in your doctor, becoming an expert on your meds, knowing how to eliminate stress and being informed overall.  It may not go away, but it could get better.  And - if you are like me you just might wake up less grumpy!

 

 

 

CANCER CHANGES EVERYTHING – AND NOTHING

I was watching a television show I have mentioned in some other articles.  The show “New Amsterdam” features a medical director of a hospital who has cancer. He talks honestly about his cancer journey.  One of the statements he made to a colleague was, “Cancer changes everything – and nothing.”

     I stared at the screen and knew exactly what he meant.  The day we are diagnosed the world stops.  Everything is in slow motion.  We watch our world change more than we ever thought possible.  We go to work, we brush our teeth, and we take a shower like before.  We wait what seems like forever for tests to get completed and treatment plans drawn up while we go on like robots.

     Inside, we are screaming, I am sick, I have cancer, and I may die. What will happen with chemo and surgery and radiation? Will I lose my hair, will I throw up, and will I be bedridden? These thoughts pelt us like hail hitting on a car windshield.  Everything has changed for us.

     When we go to the waiting room for our treatments or appointments with our doctors, we look around and watch others going through the same emotions.  Some have coverings on their bald heads.  Others are softly crying.  Others are talking to their family with sad expressions on their faces. Still others have shunts in their arms or chests.  We wonder if we look like everyone else in the room.  Some people look normal, but maybe they are relatives or not yet diagnosed.

     Stepping outside of the hospital world is different.  People are driving/ working/walking/laughing/talking/watching their kids and doing what they do every single day.  Nothing has changed.   Initially, it seems a bit unfair.  If our world has turned upside down and inside out and topsy turvy - why is life still going on for others?  Yet, it is a relief as we realize we may join that world again after the treatments.

     I will go one step further and say the death of a loved one, a horrible divorce, a bankruptcy, a storm that destroys our house also can leave us shaken and not knowing how anyone can go on.

     This doctor, although fictitious, has hit the nail on the head.  Cancer changes everything.  Our whole worldview is different and our bodies will never be the same again.  We know how vulnerable we are and are more grateful for the little things.

     Yet it changes nothing.  The sun comes up in the morning and sets in the evening.  The seasons change and we wear different clothing to accommodate the weather.  The earth is still rotating on its axis.  Life does go on and we can find comfort in that.

THE GIFT OF WINTER FOR CANCER SURVIVORS

I have a wonderful friend who does Reiki on me.  She is very special, and a spiritual person.  We were talking about winter coming up and I mentioned I was behind in my writing.  “Winter is such a gift” She said. “People don’t realize they can stay inside and get things done they don’t in the summer.”

     I looked at her in amazement as I realized how right she was.  I have written another article on winter for Cure titled “On Canadians, the cold and cancer “about how the people there have parties and get together to get through the long hard months of ice and snow.

    I typically don’t like winter.  I have a small three season room that I live in 9 months of the year.  I soak in the sunshine and enjoy my dancing solar figures.  I love to gaze up at the stars at night, since I have three sides of complete windows to look out. I am always sad when my television comes inside and the air conditioner is turned off. I love being outside with my fourteen year old service dog talking to my neighbors while she rolls in the grass like a young puppy!  She and I know every single outdoor patio to eat in the entire county.

     Winter brings all of this to an abrupt end.  It is dark at 5 PM.  I hate worrying about sliding around on icy roads and cancelling appointments. I cannot go out in the cold three season room and I seldom see my neighbors. The patios are all shut up with no one eating outside.

     But my friend is right.  There is a lot to be said for some advantages of winter. Unfortunately, I don’t have a fireplace, but I enjoy curling up on my loveseat and turning off the overhead lights when watching televisions.  I have a beautiful handmade wooden tree and I change the decorations for each season.  It is lighted up and features the blue snowflakes and ornaments, making my little apartment cozy and fun.  I have flickering candles all over and it feels comfortable.

     I do get more writing and tasks done in the cold months. It is much easier to sit in front of my computer to write when it is dark. Sometimes I go to the nearest coffee shop and write by the hour.  Did you know that J.K. Rowling of the famous Harry Potter series wrote her books at a local café? If she can do it I can!  I love going to bed with my electric blanket with my cat curled up on my feet.  It isn’t always a bad thing to cancel appointments or dinner with friends and just stay inside.  On cold mornings I like to make hot chocolate and look outside to see the snow falling.  I realize of course I can do that being retired.   I do remember when I was working how terrible it was to get up and go to work battling snow and drifts. But it also it was a thrill to get home safe and sound and not go out again.

     Someone once told me there are more authors who live in cold climates than warm ones, and I feel there is a reason door this.  Winter is also a good time to clean out basements, attics and closets.

     I am sick of the darkness and by March am reaching out for the light again.  Knowing spring is coming keeps me going, and realizing the grass comes up again gives me hope for eternal life for all of us.

     Every cancer survivor has gone through dark and terrible winters with chemo treatments, side effects and pain. But when we see these flickering lights which are friends and family, it means the world to us.  We also cherish the light of spring even more – perhaps the end of a treatment or a cure.

     Sometimes with the disease, we enjoy staying home and do not feel like facing anyone. However, often the day comes when we are ready to go out again.  We look back on the winter, marvel at getting through it and absorb spring into every bone in our body with gratitude.

     Winter is a gift that gives us more time to ourselves and that prepares us for the light again.  My wise friend is absolutely right!

 

CANCER SURVIVORS WAIT FOR THE OTHER SHOE TO DROP

“I am waiting for the other shoe to drop,” is a popular expression I have heard many times.  I thought I understood this saying, but I truly didn’t until I was diagnosed with cancer.

     Cancer typically isn’t treated the way I originally thought, which was a straight line from diagnosis to treatment to cure. I’m not sure why I expected this, because life isn’t a straight line.  Events may occur smoothly, and suddenly out of nowhere we are hit with an illness, a death of someone we love, a job loss, the loss of our home from fire or storms, or another catastrophe. 

     It took me many years to discover that eventually everyone has their straight line stopped.  I have friends and family who seemed to lead “charmed” lives until something unexpected happens to turn their world inside out and upside down.

     I know all of this intellectually, but in reality, with an incurable blood cancer, I find myself thinking of this quote.  I try so hard to be positive, but in the back of my mind I am constantly waiting for the other shoe to drop.  For my blood counts to worsen.  For the results of the next bone marrow biopsy to be haywire.  For the chemo with its side effects to be administered, intensified or changed. And for the eventual outcome (unless there is some miracle clinical trial) where I will not ultimately survive.

     I have promised my readers that I will always try to be honest.  In spite of my positive attitude, I find myself waiting way back in the back of my brain for that other shoe to drop.  I am facing another bone marrow biopsy soon and am admittedly nervous.

     However, I have learned something else from my cancer.  I know the other shoe will drop.  It is not a matter of if but when.  A wise friend once told me I couldn’t change my circumstances, but I could change my attitude towards my circumstances.

     This, my friends, is the only thing in life any of us have control over. I can ruin my upcoming holiday season worrying about what the New Year will bring and allow those lingering doubts, which I seldom voice but do think about, to ruin the here and now. If I do this, I can’t enjoy the present with the celebrations, gift giving and precious time with friends and family.

     Or I can tell myself sternly that worrying will not change the outcome, but make everything worse.  I can put off my worries until there is something to actually worry about.  It may very well be the next bone marrow biopsy will show little change and I am free for the next six months to stop being concerned.

     Yes, there are those of us who are cancer survivors and constantly waiting for the other shoe to fall.  But we don’t have to flap around like Chicken Little being scared. We don’t have to look up in the sky watching for the shoe.  We can center ourselves, dig in and enjoy what is happening on the ground.  That is more fun anyway!

A CANCER LESSON FROM A TV SHOW

It is interesting to observe the lessons one can learn from a supposedly recreational television program.  I was watching a new series this year called “New Amsterdam.”  Surprisingly, the show features a medical director of the hospital who has cancer.  He was talking to a Rabbi with cancer faced with what seemed like an impossible decision.  The Rabbi could either go home and live a year with his family doing chemo and radiation; or have a surgery which he had only a 10% chance of surviving due to a bad heart, but he would be cured. He chose the surgery.

     When the doctor asked him why he made the decision he did, the Rabbi’s answer hit me like a ton of bricks.  He replied, “I can either wake up dead or cured, but will no longer be a patient.”

     Later in the show, the doctor decided to have a clinical trial targeting his cancer rather than chemo and radiation in spite of the lesser chance of surviving with the trial.  His oncologist was dismayed, but he told her emphatically, “I don’t want to be a patient – I want to be myself.”

     Cure’s motto now is one I can relate to.  “I am more than a patient.”  It occurred to me after this program that what is bothering me about my incurable blood cancer is that I will be a patient until I draw my last breath.  Other cancer survivors (but not all) come and go from the Cancer Center, but I am there forever.  Honestly, the only thing that keeps me going is the staff and oncologist is so wonderful to me and has become my friends.  In other words – they “get it!”

     Of course, I am a patient at my family doctor’s office, but if I’m not sick I go in twice a year for regular wellness checkups.  This is totally different.  All of us with chronic diseases face the fact we do not have a choice and will be a patient forever.  Cure really hit the nail on the head with that motto.  I am constantly on chemo, have bone marrow biopsies twice a year, and visit the Cancer Center monthly, 

     However, I am more than a patient.  I am very vocal about what I think at the Patient Advisory Council meetings.  I love to talk to my doctor about my writing, my travels and my family. I am sure she realizes the psychological benefit of talking to her patients about their lives and that is why she is so good at what she does. I write articles explaining I do many other things with my life, instead of just being a patient.

     No matter what treatments I am receiving, no matter whether I am cured for good, I am not “just” another patient. I may have to fight a little harder for the status of being my own person.  However, it behooves all of us to remember that “I am more than a patient – I am ME!!! “   

    

WHY AM I ALWAYS SO TIRED – A LOOK INTO CANCER FATIGUE

Fatigue is an often-mentioned side effect from cancer and its various treatments. It is not the type of fatigue where a good night’s sleep will “cure” us. It just seems to go on and on.

A standard dictionary definition of fatigue, according to Medicine, is, “extreme tiredness resulting from mental or physical exertion or illness.” Fatigue can also be acute and come on suddenly or be chronic and persistent. This describes what many of us experience.

There are several names for fatigue in cancer patients, which include cancer fatigue, cancer-related fatigue and cancer treatment-related fatigue. Whatever it is called, I think most cancer survivors will agree that it sucks!

Cancer fatigue has made a huge change in my life. I researched various articles from the National Cancer Institute, Mayo Clinic and Cancer Network: Oncology Nursing to find out more information. As I suspected, this insidious and lingering side effect is under-reported, under-diagnosed and under-treated. The percentage of persons suffering from fatigue in breast cancer survivors may be as high as 30 percent and last as long as five years after treatment, according to the journal Oncology.

The question I have is why, and now the research is explaining some reasons. The changes to your body by the cancer can lead to fatigue. Certain cancers can weaken muscles, damage organs and alter hormones. Some cancers release proteins called cytokines which causes fatigue. All cancer treatments, including chemo, radiation, surgery, bone marrow transplants and biological destroy healthy and damaged tissue, according to the Mayo Clinic.

Obviously, there are other side effects from treatments such as nausea, vomiting and diarrhea that can also cause tiredness. Think what an episode of the flu or an intestinal bug does to our body, then imagine what survivors go through periodically. Some cancers can even cause anemia, which is bound to make the body weak.

In addition to all of the above causes, pain, lack of sleep, infections, hormonal changes and other factors increase the fatigue even more. Immunotherapy can leave flu-type symptoms, while surgery is always an assault to the body. It also makes sense that the buildup of toxic substances left in the body after treatment contributes to feeling weak. Being less active is a huge factor.

One of the most important elements of fatigue in cancer is nutrition. In cancer survivors, the body may not be able to absorb the nutrients from the food as a result of cancer, treatment or both. The patient may not feel like eating because of nausea and diarrhea. The body needs more energy because of infections and fever, which many survivors suffer.

One way to battle fatigue is to have your doctor refer you to a nutritionist. I am fortunate enough to be at a YMCA which has a LIVESTRONG program, and have received tremendous advice from two nutritionists. One of the first foods recommended to me was Kefir for my intense diarrhea. The nutritionist relates a story about a colon cancer survivor who had gone through more than a dozen medications from his doctors to control the diarrhea and nothing worked. He decided to eat the Kefir, which immediately helped him. It is available in the yogurt department of most grocery stores. I have learned to make smoothies, to try different brands of foods and to read labels from these classes.

The other major solution to fatigue is hyper kinetics or exercise! Regular and moderate exercise improves one’s capacity to move, increases muscle strength and decreases fatigue. LIVESTRONGhelps with special exercises for persons recovering from cancer treatments. What survivors need to realize is we do not need to run a marathon. Even an exercise like simple chair yoga helps with fatigue.

Finally, the cancer survivor needs to learn how to pace oneself and not over exert. A number of articles have addressed this, but what I find most interesting is one from the National Cancer Institute. Research has discovered that during and after cancer treatment, patients cannot stay focused over long periods of time and have a hard time remembering. There is even a name for it – attention fatigue!

The answer to helping with this type of fatigue is to take part in restful activities, and spend time outdoors. Now I know that all that time I spend watching television and reading are good for me!

In summary, fatigue is a problem that doesn’t go away. However, we can try to make it better. Talk to your oncology nurse, navigator, doctor and people on your medical team and do not just believe that fatigue is inevitable. All of us need to have some control, and the more control we have over our bodies, the better we feel!

A CANCER LESSON FROM A TV SHOW

It is interesting to observe the lessons one can learn from a supposedly recreational television program.  I was watching a new series this year called “New Amsterdam.”  Surprisingly, the show features a medical director of the hospital who has cancer.  He was talking to a Rabbi with cancer faced with what seemed like an impossible decision.  The Rabbi could either go home and live a year with his family doing chemo and radiation; or have a surgery which he had only a 10% chance of surviving due to a bad heart, but he would be cured. He chose the surgery.

     When the doctor asked him why he made the decision he did, the Rabbi’s answer hit me like a ton of bricks.  He replied, “I can either wake up dead or cured, but will no longer be a patient.”

     Later in the show, the doctor decided to have a clinical trial targeting his cancer rather than chemo and radiation in spite of the lesser chance of surviving with the trial.  His oncologist was dismayed, but he told her emphatically, “I don’t want to be a patient – I want to be myself.”

     Cure’s motto now is one I can relate to.  “I am more than a patient.”  It occurred to me after this program that what is bothering me about my incurable blood cancer is that I will be a patient until I draw my last breath.  Other cancer survivors (but not all) come and go from the Cancer Center, but I am there forever.  Honestly, the only thing that keeps me going is the staff and oncologist is so wonderful to me and has become my friends.  In other words – they “get it!”

     Of course, I am a patient at my family doctor’s office, but if I’m not sick I go in twice a year for regular wellness checkups.  This is totally different.  All of us with chronic diseases face the fact we do not have a choice and will be a patient forever.  Cure really hit the nail on the head with that motto.  I am constantly on chemo, have bone marrow biopsies twice a year, and visit the Cancer Center monthly, 

     However, I am more than a patient.  I am very vocal about what I think at the Patient Advisory Council meetings.  I love to talk to my doctor about my writing, my travels and my family. I am sure she realizes the psychological benefit of talking to her patients about their lives and that is why she is so good at what she does. I write articles explaining I do many other things with my life, instead of just being a patient.

     No matter what treatments I am receiving, no matter whether I am cured for good, I am not “just” another patient. I may have to fight a little harder for the status of being my own person.  However, it behooves all of us to remember that “I am more than a patient – I am ME!!! “