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!  

 

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!

 

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.