LEARNING MY LIMITS THE HARD WAY!

I am on a wonderful vacation cruising through Canada and ready to have the time of my life. My oncologist took me off chemo so I would not experience the nasty side effects.  I had been eagerly anticipating this vacation for months.

     Step by painful step I am walking through picturesque Quebec City. All around me are historical old buildings, dozens of art galleries, unusual old cathedrals and several museums.  It is truly one of the quaintest and most beautiful cities I have ever visited.

     The problem is I can’t enjoy it one little bit.  The rain is pouring down in the hazy mist, the walking is treacherous, and every single muscle in my legs is tightening up in spasms, screaming in protest.

     My friend who took the cruise with me kept coming back to check on me.  We were on a walking tour with an extremely enthusiastic and knowledgeable tour guide.  I kept bringing up the rear.  After awhile other concerned people in the group began to ask me if I was all right.  The voice of the tour guide faded to a dull roar in my ears.  I had just had tea and pastries in the famous Chateau Frontenac hotel and we were heading back to the ship after two hours of walking.

     All I prayed for was to get back to the comfortable ship, take a warm shower and lie down.  But – I had to get there first.  My calves were burning like hot coals.  I was unable to take the large steps I needed; just tiny itty bitty ones like a baby. There was nowhere to sit, and of course no taxis in this part of town.  The relentless rain was pouring down my neck, and my raincoat was virtually useless.

     What was going on?  The people in the group asked me if it was my knees.  One person who had been behind me told me my heel was not sturdy and I should get a prosthetic device from a physical therapist when I got home.  Gamely, I thanked these wonderful people and concentrated on taking the next step.  When the ship finally loomed in my sights I pushed harder.  I was the last one to climb the ramp wearily as the crew was waiting to pull up the gangplank.

     After eight years of being on chemo, I thought I knew my limits.  I had already given up going to Ohio State football games every year because of all the walking, climbing many steps and the long drive back and forth to Columbus.  For some people this doesn’t sound like a sacrifice, but sports enthusiasts and Buckeye fans understand what it is like never to see Script Ohio, the band or the team in person again.

     My friend said to me sympathetically after we settled in the room, “Well, you are learning your limits.

     Damn it – why did I have to learn the hard way!  I checked the rest of my excursions in Prince Edward Island, Sydney, Halifax and Bar Harbor.  I limited myself to places I could sit and rest.  There was no climbing up rocks to the most photographed lighthouse in the world at Peggy’s Cove for me!  I was careful the rest of the time, the weather was beautiful with no more rain, and I had a memorable trip!

     I returned home to tell my oncologist this story. I told her how the pain and spasms scared me.  She explained that this was due to the cancer and the resulting anemia.  For once I could not blame the blasted chemo!  She said if I continued to have this happen, I could go on Procrit shots and she would monitor me.

     One problem for all of us cancer patients is just when we think we have learned our limits, they change.  For some patients this is only temporary and many people can resume most of their activities once they are off chemo.  But with a blood cancer, the learning curve is changing, curving, winding, dangling hope and then retreating.  Only a year ago I was able to go to the football game.  Two years ago on another cruise, I walked all over Barcelona.  But my body is changing and I need to adapt to that every single day. Also factors like the weather need to be considered.

     When I talk to other cancer survivors, they tell me learning their limits is one of the hardest things to do. I have the spasms to remind me.  But, I need to look at the positive side.  I enjoyed the rest of this wonderful cruise (pictures anyone)? I can still do short walks and most of all I am alive.  And that is what counts!

         

SOME DAYS ALL WE CAN DO IS TAKE CARE OF OURSELVES

I look around my apartment heaving a huge sigh. Laundry is piled on my spare bed waiting to be folded. Clean dishes in the dishwasher need to be put away before my next meal. Trash is overflowing in my wastepaper baskets. However, I feel too tired and weak from my low blood count and chemo to do any of it.

Wistfully, I recall the days I could work all day, come home and do things around the house and then go out for dinner! Those days are long gone. I am off the chemo this week, but next week I will feel even more fatigue when I go back on.

I do fold my laundry (sort of) and put away the dishes. I will not tackle the trash until tomorrow because I live on a second floor. This involves steps and it takes me a long time to do this particular task. I have balance issues from the chemo, and have to take each step one at a time holding the trash in one hand and the rail with the other. No more bounding up and down the steps for me.

Right now I am doing a real pity party. Fortunately, I do have a wonderful friend who comes and cleans for me twice a month and is a godsend. I actually had her before I was diagnosed with cancer, because I was working two jobs and would rather pay someone to clean then do it myself. Now I truly need her.

Eventually, a light dawns on me. I remember my wise mother in her old age remarking that she wanted to just take care of herself. She did it well until she was 90, and was devastated when she became dependent on others.

I can do most things I need to now. Maybe tasks are not done perfectly, maybe I move slowly, but I can do it. There may come the day I can’t as the blood counts go lower and I get weaker. I simply need to pace myself for daily tasks. I can’t spend any precious time I have left worrying about the future.

I often compare cancer (and life) to a roller coaster. It never is a straight line. Life dips and curves and winds and goes up and down. If you are going in a straight line, it won’t be for long. Cancer (And life) also can be compared to a baseball game. We get thrown curves and sliders and fast pitches and sometimes, like the day we found out we had cancer, we get hit by the ball! But, human nature being what it is most of us somehow moves on.

I have to take what I can get. I know sometimes all I can do are the simple things. I may need to postpone some jobs. I may not do it well. Laundry may be wrinkled, trash may overflow, mail may pile up, and dust may accumulate. But is that really important in the scheme of things? Cancer has taught me it isn’t. For now taking care of me is enough. And this is true for all of us both with and without cancer!

CANCER:YOU CAN’T DO IT ALONE

Recently I published a book on my cancer journey titled “Life is short – eat the donut!” I insisted on giving a copy to one of my dearest friends, who has helped me the most. It was she who was with me on my initial visits to the doctor ,when I was trying to get oriented to chemo. She accompanied me when I traveled to two major universities to get second opinions on treatments. She still takes me to all my bone marrow biopsies every six months. And she was the one there to wipe away my tears when my first oncologist told me I only had 100 months to live and this was an incurable cancer.

Edlyn looked over the acknowledgments in my book. I had so many people to thank, and know I probably unintentionally left some people out. I know most people do not bother to read this page, but as an author I always do because this page describes the personality of the author.

Slowly Edlyn spoke and said, “There are so many people who have helped you.”

I answered, “I know and am so fortunate.”

Her sensitive eyes met mine and she said, “But what about the people who don’t have this type of support. What do they do?”

I felt a shock tingle throughout my body. She was absolutely right. No one – and I mean no one- can ever fight this insidious disease alone.

Later, I gazed over the acknowledgements again. The dedication page was to my amazing oncologist. I also thanked all the people at the Cancer Center including the receptionists, lab people, doctors and nurses who worked there. There are over 40 of them and I know that because one year I gave each one a snowflake ornament for the holidays.

I thought about my family and friends who were with me during my tough start of a new chemo. Several of these friends brought me food. The friend who cleans my apartment is invaluable. My neighbors who carry groceries up the stairs when I am too weak to carry them have my enduring gratitude

I have a wonderful pastor and congregation, who support me immensely. I treasure my nutritionist and trainer from the LIVESTRONG program, who have done so much to keep me healthy and balanced!

I belong to a Patient Advisory Committee, and the other participants are such fighters and an inspiration to me. I have also met the administrators at the hospital who work so hard behind the scenes to ensure that things run smoothly.

I am fortunate because I have several close friends who “get it.” They laugh and cry with me though the ups and downs and they are wonderful. I also have received countless cards, prayers and love that keep me going.

My service dog is always by my side, and her sweet and gentle temperament never changes. She is old for a dog (almost 14) very stiff and sore and still wants to be with me. She actually picks up my keys that I keep in a basket in the hallway and hands them to me when I head for the door, because she wants to be with me so much! I am truly blessed.

However, my advice to others is to reach out and admit when you do not feel good and have a bad day. It took me a couple of years to do this. People cannot help if they do not know what you need. Since I am very independent and have lived alone` for over 45 years, this was a tough lesson for me. I already am asking friends and family if I start a new chemo, will they help me?

I truly do not know how people without this support do it. I am thankful every day. It does take a village and it is up to us to use it!

KEEPING BALANCE AFTER CHEMOTHERAPY By

The definition of balance is “The body’s ability to remain stable while standing, sitting or moving about.” This sounds simple enough – right? Unless you are on chemo.

The Cancer Treatment Centers of America outline several balance problems with cancer survivors, including altered or irregular step, unusual clumsiness, a chronic fatigue that prevents the patient’s ability to even perform daily tasks, dizziness, lightheadedness or vertigo where the room is spinning.

Poor balance can also result from a reduction or change in chemotherapy drugs.

Before my diagnosis, I naively thought the side effects of chemo included nausea, vomiting, hair loss and fatigue. There are many more bad results of chemo and Cure readers are aware of this. However, balance is one that is seldom addressed. Fortunately, an increasing amount of research is being done on this phenomenon. The research is extremely important because of the risk of falls for the cancer survivor, which leads to even more problems.

Another side effect that is being studied at The Ohio State University Center related to balance is chemotherapy-induced peripheral neuropathy. (CIPN). This means nerve damage which impacts the feelings in the hands or feet. Preliminary studies show that even one chemotherapy treatment can cause problems. If a patient is walking and cannot feel a crack in the sidewalk, a pine cone, or piece of wood, a fall is imminent. For those people who suffer from dizziness the danger is even worse.

Cure readers have also seen blogs about chemo fog or chemo brain. It makes sense, if a patient’s memory or attention span is poor, one is apt to trip and fall. Frequently chemo patients report bumping into walls, which has happened to me numerous times.

Unfortunately, most doctors fail to warn their patients about all the side effects of chemo. In fairness to them, it is impossible to anticipate all of them, which are different for each person. The consumer needs to research for themselves.

It was my exercise trainer at the YMCA LIVESTRONG program who first mentioned the balance issue to me. As she talked about this, it all connected. I would lean to pick something up and almost splattered on the floor several times. The more years I have been on the chemo; the worse the chemo fog and coordination are. Recently, I fell against an armoire after losing my balance. When I attempted to get up I fell again! This is scary stuff but at least I know the reason, which makes it easier. My trainer has been doing special exercises to help me.

The positive to this annoying, even dangerous side effect, is that there are solutions to help. Inspire Health has several suggestions. The biggest one is to talk to your doctor and get a medical assessment. If there is evidence of vertigo or dizziness, there are medicines that can help. The most important assistance is exercise. These can be performed by a physical therapist, exercise physiologist or athletic trainer. These professionals can individualize each protocol and use a variety of tools such as a fit ball, bands, single leg standing, heel raises and many other therapeutic tricks to strengthen balance. I go weekly to a special trainer and I find if I even miss one session, it makes a difference in my balance and orientation.

Other wonderful therapies include yoga, Pilates, dance, Tai chi and similar exercises – take your pick! Often these are offered free at the YMCA through your LIVESTRONG program and you need to check out your options.

The whole idea of falling is scary as we age, whether we have cancer or not. The good news is we can be proactive. We need to tell our physicians so they can tweak or minimize the chemo if possible. Then we need to get into an exercise program. After all, we always feel better afterwards – so let’s get moving!

CANCER IS LIKE A BASEBALL GAME?

When I was a counselor in a state vocational agency, I worked with people with disabilities ranging from head trauma, blindness, deafness, or learning disabilities. Some of my clients would approach me ashamed of their disability, and not wanting to ask for any kind of help. I would explain to them that this agency was designed to help them gain employment and pay taxes back into the system.

Other clients, especially those who experienced a disability later in life, were so confused they wanted me to do everything for them and didn’t know where to start.

Our agency provided help such as special computer programs that voiced the text for people who were blind, hearing aids and assistive devices for people who were hard of hearing or deaf, or special job coaches to assist people to learn a new job who had learning disabilities. We also paid for college and special training. What fun it was to be able to provide these much needed services!

As a rehabilitation counselor I would make it very clear that everyone would have to help themselves. I am a baseball fan and here is what I told them.

“Our agency provides you with the bat, the ball and the glove like the training and special devices. It is up to you whether you bat a home run; get to first base or strike out. You may have to get up and try over and over again.” Most of them would understand this analogy.

Honestly, the game of life is like a baseball game. We all have times in our lives when we hit the ball, we foul off the ball or we strike out. We are not always the perfect employee, parent, children, friend, or sibling. The most competent hitter in baseball is considered good when hitting 300. This is only 3 out of 10 pitches – and they are the best. Think about that!

Similar to this is the battle with cancer. I look back over my treatments, my chemo and the past 8 years. The chemo has consistently had to be changed, tweaked, and even stopped. Sometimes the side effects are too dangerous, the chemo stops working, or the cells change. Many other cancer survivors I talk to mention that drugs are constantly added and subtracted from their shunts, their IV’s or oral medications.

I truly think being an oncologist has to be the hardest medical specialty that exists, because no one is the same and they have to tailor every single treatment differently. What works for one person can be a disaster for another one. It is very different from replacing a knee or handing out an antibiotic.

When I started my cancer journey, I mistakenly thought there would be a set protocol. Instead there have been 8 years of changes. Sort of like hitting a home run or striking out!

But life is like that. We are pitched curve balls, straight balls, sliders and more. We get unfair bosses like some umpires, and the ball often bounces the wrong way. Sometimes our friends and family cheer us and other times they don’t get it. Hopefully they do not boo us! All we can do it equip ourselves with faith, surround ourselves with caring people, and seek the best medical care possible and always step up to the plate to try again. Yes, life (and cancer) is like a baseball game and we have to play it!

HOW FRIENDSHIP CAN GET YOU THROUGH CANCER By

One of the healing aspects we tend to forget or downplay on our cancer journey is the value of support from friends. Research has documented how essential friends are in order to have the mind/body/spirit connection in our continuous fight against cancer.

Stanford University is on the cutting else in their studies on this subject. Reviews are mixed whether or not support groups actually help people with breast cancer to live longer. However, there is no doubt that people in support groups are happier and live better!

Increasingly we know that Reiki, massage therapy, nutrition groups, exercise groups, and essential oils are extremely important in healing. Many top cancer centers are including these services in addition to surgery, chemotherapy and radiation in their treatment plans.

What I was shocked to read, however, was that Dr. David Spiegel; head of psychiatry at Stanford University has emphasized what does help people to live longer. For males it is to be married and for females to nurture relationships with her girlfriends. He even has a YouTube titled “How your friends help you live longer.”

Why is this? Traditionally, women talk more about their feeling to each other while men will converse about sports or hunting or fishing. Most men don’t talk about feelings which are why those with a wife tend to live longer.

Translate this to cancer. Women can confide to other women how they feel about pain, fear of dying, leaving people they cherish behind and when they are having a good or bad day. Spiegel explains the scientific reason for this. “Girlfriend time” actually produces more serotonin neurotransmitter in the brain, which helps to combat depression and make us feel good. He emphasizes that those lunches out and times together with friends are not a waste of time. In fact, failure to maintain a personal relationship is as dangerous as smoking!

I do want to state my personal opinion. Fortunately, the split between genders is changing for the better. I remember when men were ashamed to cry or show emotion and that is more acceptable now. They also need to be encouraged to have friends since they have emotions and feelings too! On the flip side, I love sitting with both male and female friends and talking about baseball, football and basketball!

Cancer survivors need to develop every single support we can to fight this insidious disease. Friends are very special. So go out with your friends, laugh together,

cry together and talk a lot. It may not cure you, but you could live a little longer and most of all enjoy life more. That is the most important of all!

CANCER CARE AND THE BUTTERFLY EFFECT

When we are discouraged, depressed and ill, it is easy to feel insignificant and meaningless. We are only one of billions of people on this earth. I truly believe this is one of the reasons for the high suicide rate.

While we are in bed nauseous from chemo, recovering from surgery, or facing yet another doctor’s appointment, it is easy to feel sorry for ourselves and that we are worthless.

Way back in 2009 a wonderful book called The Butterfly Effect was written by Andy Andrew. The message is one of the most powerful ones I have ever heard.

In 1963, a man by the name of Edward Lorenz presented a hypothesis to the New York Academy of Science. Basically his premise was when a single bitterly flaps its wings and moves molecules of air, which continues to move more molecules of air, eventually a hurricane can develop on the other side of the planet. He was ridiculed for thirty years for this idea until his theory was proven scientifically accurate!

Andrew’s continues in this book to cite several examples of one “little” event that changed world history. A colonel in the Union army won a battle against the Confederates with only 80 men. If he hadn’t won, historians believe there would have been two countries and years later, the USA would not have been powerful enough to defeat Hitler. History would definitely have changed for the worst.

I prefer to think of this on a smaller scale. I go to the doctor and am told the wait will be over an hour. I sit in the waiting room fuming and grumbling. Pretty soon my mood permeates, while patients begin to complain to the nurses who aren’t allowed to say anything back to the patients. They begin to grumble to each other. The doctors pick up the mood of the nurses so everyone is upset and having a horrible day. Then all these staff and patients go home and take it out on their spouses or kids or cats or dogs. Anyway, you get the picture.

Or you can sit there like I did today when my cell phone went off playing a local (Ohio State) fight song, because I forgot to shut off the ringer. I poke buttons to stop the sound immediately while people around me were chuckling. I start laughing and asking if they wanted to play the rival’s fight song (University of Michigan). The person sitting across from me says she would like anything to break the monotony and soon people were chatting and not complaining. I noticed when I went back to the room for the doctor, the staff was all happy and greeting me by name while the doctor was fantastic. She always is – I never have seen her in a bad mood!

We don’t need to fight in a war and win a battle to be mighty. Andrews reminds us “every single thing you do matters…you have within you the power to change the world... your life and what you do with it today…matters forever.”

If you are lying there and doubt this do think of the little butterfly and the hurricane. If we say one little positive comment or read one positive sentence – it matters. And you do too!

IS CHEMO FOG FUNNY?

Yes it seems funny when I tell people my stories. I go and open a can of tuna for my dog and cat. They are both spoiled fur babies and love their night time tuna treat. The next evening I go to the refrigerator and cannot find the tuna. Shrugging, I think to myself that I could not have possibly given them the whole can the night before. I open the cupboard and realize I put the leftover tuna on the shelf instead!

I laughed after I put my soiled laundry in the wastepaper bin in my bathroom instead of the laundry hamper. When I told my oncologist, she didn’t think it was funny at all. I think she knew I was not entirely joking and was hurting.

It is embarrassing when I have to e-mail friends and ask them if I sent them a thank you note. I am pretty good about writing down gifts or what someone has done for me and making a list of contacts. The problem is after I send the cards I find myself wracking my brain to remember if I indeed written them. I have traditionally been pretty good about making lists when I go to the grocery store or shopping. But now I keep the lists a little longer so I know what I have done or bought.

And that search for words that I truly know makes me crazy. My friends and family try to help me, but I feel like a little kid sometimes.

Some of these events sound flippant and unimportant, but they are not to me. This is chemo fog. I was a rehabilitation counselor for several years and worked with people with Traumatic Brain Injury or Traumatic Head Injury. I thought I understood what people were going through but the proverbial “You don’t understand until it happens to you,” is true.

I do try to handle these incidents with grace, but I know it is not amusing. I feel very fortunate because several people with cancer, especially people who have fought it as long as I have, tell me their sad stories. They explain how one friend after another slowly fades away and is not around when they need them. This has not happened to me and I feel lucky. But I also make a conscious effort, not to have my cancer be the focus of every conversation. I may tell someone who asks that my blood counts are up or down, but that is the extent of it. My closest friends and family know that I have already lived longer than most people with this cancer, and I share that this concerns me. However, I still talk about my writing, books I am reading, travels I have taken and sports I enjoy because I honestly think people would rather hear about that. I do attempt to laugh off the frustrating side effects like chemo fog, because humor offsets a lot of other emotions that would normally spill out.

I have found one huge coping mechanisms for the constant forgetting. I find myself doing what I advised my clients to do for years as a counselor. WRITE EVERYTHING DOWN!!!

I have a calendar and live by that. If it is not in there, I will forget an appointment or lunch date. I am religious about putting everything in that little black book, because if I don’t, trouble ensues. Another bit of advice I have is not to leave lists in different places around the house, rather keep them in one place. Many people put everything in their cell phone and that works too. I am just not as handy with this technology as some people, and it is quicker for me to write things down with paper and pen.

Do not trust yourself to go to the grocery store or anywhere else and think you will remember items you need in your head. ABC news actually did a segment on “Good Morning America” explaining why most people can only remember a maximum of 7 numbers or items outlined in https://abcnews.go.com/technology/brain-memory-magic-number/story?id=9189664. It is too complicated to explain here, but if you read this article and the explanation of the way our brain is wired to remember only a few digits, you will be intrigued. I wonder if that is why telephone numbers in the U.S. are traditionally 7 numbers.

I had to think about this – if a maximum an average person can remember is 7, why do I think I can go and remember 5 or 6 items or more? I used to be able to, but not now. I have found my maximum is 3. Again, lists can be your friend if you want to pick up accurately more than 2 items.

The people who are researching this phenomenon are labeling it “chemo brain.” There are several great articles appearing from agencies such as Mayo Clinic and the American Cancer Society. Great strides are being made by the manufacturers to try clinical trials for drugs that don’t cause this foggy state. I think it is fantastic that finally the medical profession is recognizing what a problem this is. In the meantime instead of getting exasperated, I need to remember that the same chemo causing me to forget things is also giving me one more precious day!

GETTING OLD IS NOT THE SAME AS BEING ILL

I am in my late sixties when many of my peers are experiencing the problems of aging. One of my closest friend attended an arthritis seminar where she was told her ailment was a result of TMB – too many birthday! There is some sort of sick logic to this statement!

On the one hand it is reassuring to have friends to commiserate with on aching and creaking joints. I laugh when my younger friends just look at me in astonishment and I tell them they will understand when they get older. Actually it is OK if they don’t! I distinctly remember rolling my eyes mentally when my parents and grandparents talked about rheumatism and their aching bodies. I tried to comprehend it but didn’t really “get’ it! Youth should have the perks of being young and mobile and flexible and pain free because life will get in the way soon enough.

However, I do balk when I mention casually that the various chemos I have been on over the past 8 years have caused me to be fatigued. Often people respond with something like, “yeah – I don’t have the energy I did when I was younger. I understand.”

I never say anything because I do not like confrontation and don’t believe in one-upmanship. However, I want to scream. NO YOU DON’T!!! I expect to slow down as I get older. In fact, I think it is wonderful that we do. I love going out with my retired friends and not being in a hurry. We can linger over lunch or dinner without worrying about “getting back” to work or our children. After forty plus years of working, we deserve it. I think our Creator did it all right – run around excitedly when you are younger; and relax and watch the youngsters when you are older.

Please, please, please do not say you understand the fatigue of cancer or many other chronic diseases such as Multiple Sclerosis, Cerebral Palsy, Parkinson’s and many others. This kind of fatigue is different because it literally cuts you down at the knees.

Getting old is not the same as being ill. And experiencing both at the same time can be challenging. The kind of fatigue from aging includes not having as much energy, not moving as fast and slowing down. We watch where we step because we don’t want to fall. Every task takes a little bit longer to perform.

The kind of fatigue with chronic disease is going strong and suddenly collapsing. One is so tired we literally have to go home and to bed. I take frequent naps and am unable to function without them. I am chronically tired. I have a good night’s sleep and still wake up weak and exhausted. I do not feel better. It is a different kind of tiredness for sure because it is permanent.

The other main difference is I always felt I would live to my 80’s and 90’s like my parents and many of my relatives did. Now I am already living longer than the anticipated age for my kind of cancer. I am facing and working through an entirely different mindset and challenges.

So – yes I understand aches and pains. I have double whammy because I have both. Unfortunately, my shoulder has had one operation and is now bone on bone. I can never have surgery because of the blood count associated with the cancer and try other methods to cope with the pain. I have severe arthritis and fibromyalgia – plus the cancer. I am in a different place than most of my peers.

I am not writing this to whine and complain. I thank God for every single day. I am only asking that when you say to someone you know what it is like – you don’t. But what you can do is reach out, take my hand and saying you care. That is all I and others really need.

I AM LOSING MY MIND – AND MY HEARING!!!

Many of us joke that of all the things we lose - losing our mind is the worst. Somehow this quote doesn’t seem very funny with chemo fog. The other tough side effect is losing my hearing.

I was born with a severe hearing loss, worked as a rehabilitation counselor, and have lots of friends who are both deaf and hard of hearing. Several of my friends are also audiologists, interpreters and American Sign Language teachers. I helped to establish a local support group for hard of hearing and deaf people through the national Hearing Loss Association of America which existed locally for over 30 years. I can sign with my deaf friends, so one would not think losing more of my hearing would be a huge blow.

It is much harder than I ever thought. I never identified myself as part of the deaf community or culture, since I had some hearing and ASL was not my first language. I also was told by deaf people because I am oral and was able to use a telephone with my hearing aids that I am not part of this unique culture. I taught about Deaf Culture for several years at the college level. I explained to students that with their own language, clubs for the deaf and schools, the deaf are indeed a fascinating minority culture within the USA.

I felt I could somewhat identify because of the difficulty of lip-reading and the discrimination job wise and personally we faced. I was blatantly told at one point I couldn’t handle a job promotion because of my hearing loss. I had no recourse since there was no American with Disabilities Act then to protect me.

However as my remaining hearing has gradually slipped away from me, I become increasingly frustrated. No longer can I use the telephone and depend on captioning on the phone or Bluetooth in my car. I am very social, and the worst part is I can no longer be with a group of people and catch anything. I am basically all right with 1 or 2 people in a quiet setting where I can lip-read and hear with my aids. With a wonderful Bluetooth pen I attend programs and I “may” hear the speaker, but never catch any of the questions in the audience. Church has totally changed for, me. The minister makes sure I hear him and I sit in the front, but prayer requests, announcements, and anything said behind me is never understood. I only can hope the names and events will show up in the newsletter.

Recently I attended a retirement party and was so frustrated I left in tears. The party took place in a very noisy restaurant and there were people I knew and loved. Every single conversation was frustrating because I caught maybe 3 or 4 words and could not understand what anyone was saying. Imagine listing to a television show and having only one word in a sentence understood. I also have had terrible experiences on the telephone where I could not understand people and they have hung up on me.

Most of my friends and none of my family know ASL, so I have to depend on what little hearing I have left and lip reading to communicate.

Of course you may ask why not get an interpreter. They cost between 30 – 80 dollars an hour depending on which part of the country you live. They are worth every penny but I cannot afford to take them to all the social gatherings.

Many of us are suffering from hearing loss because of the lifesaving chemo we undergo. Some of us do not even know it because it is sneaky and gradual. But there does come the day that we realize our lives have changed. Some chemo’s when stopped the hearing can return, but not the kind I take.

I often think the diarrhea, the nausea; the painful shots I have endured, the bone marrow biopsies twice a year are discouraging. But nothing is worse than the long term effects like chemo fog and going deaf. I do think that we need to report these medications and hope research will try to develop chemos with fewer side effects. What we do not realize is there is no test for whether the chemo causes hearing loss or chemo fog before any drug product goes on the market. Only by us survivors telling them and reporting do they ever know.

Being a cancer survivor, like getting old, is not for sissies. However, I have to remember the mantra – I am alive and that is what really counts!