Jane is a ten-year survivor of a very rare form of cancer Myelodysplastic Syndrome. She has enjoyed several exciting careers including a librarian, counselor, teacher, and writer. She loves to write about surviving cancer, overcoming hearing loss, and her hearing ear service dog, Sita.

Jane Biehl Ph.D.

We are now into our second year of the pandemic. Little did we realize during the chaotic year of 2020 that we would still be fighting this terrible pandemic in the middle of 2021? This monster virus is still causing overcrowded hospitals, weary frontline workers risking their lives, schools fighting to stay open and nasty political battles over vaccinations and masks. We never dreamed (at least I didn’t) that a variant named Delta would attack not only the elderly, but another vulnerable population of young people and children.

Frankly, I am tired of it all. I wish I could wake up and teleport back to 2019 with a semblance of normalcy. I was reading Louise Penny’s latest book, "The Madness of Crowds." Two paragraphs describing the emotions of Canadian citizens after the pandemic and the shutdown caught my eye.

“They were battered and bruised from losing relatives, losing friends. Losing jobs and favorite haunts. Tired of being isolated and driven near crazy with loneliness and despair.”

This describes it all in a nutshell. I am tired of being constantly afraid. I am scared every single day to go outside for a simple errand and becoming exposed. Even staying home can be dangerous these days because a friend, neighbor, child or family member could enter our safe sanctuary and unwittingly infect us.

Then, I thought about what an extra burden we cancer survivors carry. We are unsure about this insidious disease named cancer. I think most of us feel that uncertain nagging in our gut that no matter what stage we are in, including No Evidence of Disease (NED), that our cancer can return or get worse. We all have those pesky side effects years later to remind us about being ill. Fear of the pandemic makes getting something from the drugstore or grocery, or going to the doctor’s office a brave risk we are forced to take. Every blood test we endure, every doctor's visit, every test or scan puts us on edge with cancer.

Part of the condition ingrained in every single human is fear and actually can save our lives. We depend on fear to survive. Remember we learned in Psychology 101 that we freeze, flee or fight when facing an enemy? Without these basic reactions, we would not stay alive. However, too much fear causes high blood pressure, heart palpitations, ulcers, shortness of breath and many other unhealthy medical problems.

What can we do? We need more than ever to take one day at a time. The present is all we have. Yesterday is over and tomorrow is not promised. The other way to survive is to be honest, and talk to other people. There is no cowardice in admitting we are afraid, but demonstrates great wisdom. All of us are probably experiencing the emotions of fear whether we admit it or not. We have a human connection. We need to find support groups of other cancer survivors, tell our caring doctors and wonderful oncology nurses what we are going through and talk to our family and friends about our very real fears.

We are all connected by being human. We are not alone with our emotions. Only through honesty and caring for each other as a group can any of us survive.

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Articles

A cancer survivor describes how survivors can help face their fears by connecting with each other.

Cancer Survivors Are Tired of Being Afraid

I think most of us cancer survivors will agree we are grateful for every day and rejoice if we are in remission. When we are told we have NED (no evidence of disease), we want to party!

What we seldom realize on this tricky cancer journey is that some of the side effects are permanent. Breast cancer survivors may mourn the loss of their breasts forever. People with cancer of the stomach, esophagus and digestive system often have to eat small meals and experience diarrhea for the rest of their lives. Many lung cancer patients are permanently short of breath. People with metastatic breast cancer never know when cancer will hit next and often experience broken bones and tremendous pain. The list goes on and on.

I was naïve when I was relieved because my treatment of a rare blood cancer would consist of 10 years of oral chemo and shots. I did not have the burns of radiation, the IVs of chemo or any surgery. I considered myself lucky.

Unfortunately, I did not come off unscathed. The lingering fatigue still drives me crazy because I want to accomplish so many things before I pass. I had raging diarrhea the entire time I was on oral chemo. My digestive system has never been the same and I take medication for esophageal ulcers.

However, the absolute worst side effect has been a permanent hearing loss. I was already hard of hearing at birth with a moderately severe loss and had carefully preserved my remaining hearing for over 60 years. I was involved with support groups and conventions for people with hearing loss for over 30 years. I even learned sign language and have friends who are deaf. However, none of my family and only a few friends know sign language.

Going from severe to profound loss was far more devastating than I ever dreamed. My life changed in so many ways. I can no longer use a conventional telephone with my hearing aids, but need to use captioning or direct streaming into my aids. I never watch a television show or movie that is not captioned. I use a transcription service on my telephone when I am facing people with masks. These masks are necessary but a nightmare for those of us with hearing loss.

The biggest and hardest change has been my social life. I avoid large gatherings like the plague. Of course with COVID-19 this affected everyone for a while. All of us hard-of-hearing people will tell you the ability to drown out extraneous noise and concentrate on the person in front of you is gone with a hearing loss. For many years I have avoided noisy restaurants and try to go when they're not busy. If a booth is available I will take it, since it protects sound better. Now I cannot go to any large party and hear even one on one. I went out recently with three friends and was unable to follow the conversation. By the time I figured out who was speaking, the next person was responding, and I got lost. However, when I explained this to them their immediate response was “Why didn’t you tell us sooner?” But I hate to ask. Once they slowed down their speech and turned their lips to me so I could lip-read, it was so much better! I went to a social gathering around a fire pit and left early, because once darkness descended I could not even lip-read the person next to me. At a retirement party, I could not even hear the server because of the noise and came home in tears. In church, I can hear the pastor, but not the congregation. The times I have come home crying have been frequent and sometimes I just want to stay home and hide. But this is not my personality either. I did enough of that with COVID-19.

I think it is hard on all of us cancer survivors when we tell people we are in remission or NED and they say how wonderful that is. They're right but most of us know our bodies will never be the same again. We feel betrayed and are trying to cope every single day. I joke that “it is better to be deaf than dead,” but I still mourn the loss of my additional hearing. We are all changed forever and mourning the loss of life before cancer. What we need to do is hold each other up, listen to each other, and savor every day.

A cancer survivor describes the agony of experiencing side effects that never go away and how she lives with them.

The Cancer Side Effects That Never Disappear

I was thrilled when my doctor told me recently I was still in remission. She stated not to question why, but just know and embrace it as a miracle. This was the best advice she could have ever given me.

I feel very humble because I have lost several family and friends to this horrible and insidious disease called cancer. But now I rejoice because there are so many projects I can finish. My book is almost ready to be published, I can contact many friends I did not see for months due to COVID-19, and I can finish projects around the house. I started going out more socially and continued my volunteer work.

Then I decided to declutter my apartment. I spent several exhausting days ridding out drawers, cupboards and bookshelves. I would take my dog outside frequently since it is summertime and being 17, she can no longer go on walks. She rests in the grass and greets my neighbors in my apartment complex where she loves the attention and pats on the head. This was relaxing and fun for both of us. 

Then, a strange restlessness started to take over. I felt unmoored, uncertain, and started acting like I had an attention deficit disorder with hyperactivity. As a counselor, I diagnosed this condition frequently with clients, but never thought I had it myself. I would move from room to room constantly distracted and repeatedly forgetting what project I was working on. I woke up with a sense of dread, not knowing which task to tackle next. What could I possibly get done today? On the days I did not do anything I berated myself. What was wrong with me?

Slowly I realized what was happening. When I was first told I was in remission, I saved my energy for the important priorities, which were seeing friends and family (until COVID-19). Additionally, I would do my writing and volunteer when I felt good. When the remission continued, I knew I was on borrowed time until my cancer worsens again.All of us are truly on borrowed time, but those of us with a potentially fatal disease feel this even more. I was putting terrible pressure on myself to get a lot done. I feared that at the end of remission, I would not be able to do all these things I can now do. When I was on chemo I took naps every day and knew I was lucky to take care of myself. And I know this will probably happen again.

But WHY am I putting this extra burden on getting more things finished all the time? I was pressuring myself; it was not my friends or family. Then I realized – so what if my basement is still cluttered and sock drawers unorganized? I need to breathe, breathe, breathe, and go back to the most important things in my life which are friends and family – and enjoying my dog!

The price of remission I was asking was too high for me. I found myself being cantankerous and constantly criticizing myself. I needed to go out and spend time with loved ones and “seize the day,” instead of listing bunches of chores.

Sometimes my priorities get confused, and I think we all do that. We need to stop long enough to realize what is most important. Those of us with cancer know that time is a precious commodity and we need to laugh and love and play!

A cancer survivor describes the mixed emotions she feels while in remission.

The Price and Joy of Remission

written in the past about the grief and loss cancer survivors feel

 when they realize their bodies may never return to the normal healthy ones they were before the disease.

I was recently leafing through a magazine, Hearing Life (Summer 2021). This is published by the Hearing Loss Association of America, and several of the articles were on the grief over losing one’s hearing. A psychologist by the name of Michael Harvey wrote an excellent article on this very subject. The point he made was that we may never reach the stage of full acceptance in the stages outlined by Elizabeth Kübler-Ross including denial, anger, bargaining, depression and acceptance. He also states we will often waver back and forth between these stages. I was particularly interested because of the personal dual losses of more hearing, plus the cancer changes in my body.

However, he had a quote by the author Vicki Harrison that said it all for me: “Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”

This is so true. I may be swimming in loss, but not drowning. Or I may go down for a while and feel like I am drowning, but finally surface to the top of the water. Or I may be calm. I remember four years after my mother’s death receiving a prestigious award and thinking I needed to go and call her. I cried when I remembered I could not. I am facing the death of several friends recently, when a memory of them punches me in the gut. I think I am dealing well with my hearing loss until I come home from a social gathering in tears because I have missed so much of the conversation.

I may be thrilled I am in remission, then my blood draw stats begin to plummet, and fear grips my heart. No, I will never reach full acceptance of any of these losses. But I am not drowning either. I sink under when another dear friend passes. I still feel pain on every Mother’s Day and on her birthday. I tread water and mourn. But the point is one I think all of us cancer survivors and anyone who is suffering from a loss knows – no matter the loss we suffer, we try not to drown permanently, we keep treading water, we sink and rise to the top, and we move on. We do not berate ourselves for not “accepting” our loss, but we praise ourselves for learning to swim and moving our bodies against the tide.

A cancer survivor writes about the ever-changing waves of grief.

Grief Is Like Swimming

I was watching a medical show on television recently where the scenes were flipping back and forth from the present to the past. One unforgettable scenario was January 2021. The staff at the hospital were laughing, cheering and dancing as they all received their precious vaccinations.

It is now July 2021. I realized with a shock that this date was only 6 months ago! I received my first vaccine in February and told the pharmacist I had never looked forward so much to one shot!

I realized, however, that I have already become complacent. I had forgotten the thrill of feeling that precious freedom of being able to socialize again. On the wonderful Fourth of July, I had been able to celebrate with family and friends again. I reflected on a year ago, when I was by myself, and thought of how being with people I loved was special.

We cannot afford to forget. The variant is raging and that is unfortunate. Those of us who have been fully vaccinated need to be cautious while enjoying our newfound freedom.

I swore if things ever returned to normal, I would not forget the tough lessons of the pandemic. I know I learned some important lessons from COVID-19. One of the most compelling is the ability to entertain myself and not to be on the go every minute. I also appreciate my family and friends more than ever. However, in five months I have failed to remember how awful it was. I need to practice gratitude every day for being able to go out with people I enjoy, attend church, go shopping and eat out.

Cancer survivors also can be guilty of forgetting how lucky we are. Some have been officially “cured” with no evidence of disease. I sense a new appreciation of life with them, but wonder if they remember what it is like to be so sick and how fortunate they are. I know I am thankful I am in remission, but tend to forget those dark days of chemo that changed my body and stole my hearing.

I do not mean we should dwell on a dark and awful past, but neither should we dismiss those times. We need to practice gratitude every minute. Whether it is surviving a pandemic, cancer, or another horrible loss, we are celebrating being alive right now, today.

A cancer survivor shares the valuable lessons she learned from the COVID-19 pandemic, almost six months after receiving her vaccination.

How Soon We Forget

When I was first diagnosed with cancer, I was told the average time to live was 104 months. After my initial shock, I felt like I would get increasingly worse, the chemo wouldn’t work and I would gradually pass away.

Thankfully, the journey has been much different than I anticipated. I often describe it as a roller coaster. Initially, I was on oral chemo for six years and then progressed to shots in the stomach for two years. Eventually, I went back to oral chemo for a year and now am in remission. I receive shots to keep up my blood cell counts but no chemo. I have lived past the 104-month benchmark and my doctor tells me it is a miracle.

However, I have lost several other friends to this ghastly disease. One of them fought two kinds of cancer for 16 years (and a heart attack), and finally gave up on the horrible chemo because it was not working. Another one was apparently doing well, then went into a coma and passed. Others have gone through the trauma of surgery, radiation and chemo and now have NED (no evidence of disease).

My mother used to tell me life isn’t fair. It would upset me even when I knew it was true. Cancer is a random disease that takes some people prematurely, while others survive for years. Do I suffer from survivor’s guilt? You bet I do. I do not understand why some people survive and others don’t. Each one of these deaths of people I love hits me like a ton of bricks and I ask why them?I know I could be next and feel guilty I am still alive.

But if we think about it, life is like that. My father used to tell me we were not supposed to know about the future. We all know the family that was killed in a terrible accident and then hear about others who survive unbelievable crashes. People die from brain bleeds suddenly, while others linger on. Life is random and so is cancer. We cling to hope about new medical treatments coming out all the time. We live each day fully because no one is guaranteed more than the present.

Life is like cancer and a lot of it doesn’t make sense. We ask ourselves why and have no answers. All we can do is grasp on to what we have, love our friends and family unconditionally and carpe diem – seize the day!

A woman in remission from her cancer ponders why the disease seemingly chooses to steal certain lives and spare others.

Why Doesn’t Cancer Make Sense?

Overall I consider myself to be a positive person. I try to look on the bright side while constantly fighting a tendency towards depression I have battled all my life.

That is why I recently was blindsided by some friends. I have known them for over 30 years. I didn’t even think I was complaining when I simply stated that I was tired after two years nonstop of going twice a week for blood work and shots for my cancer. “Oh but don't you enjoy the social interaction?” they chirped.

“You have a chance to get out with people.” My mouth dropped open, especially since they're all counselors!

I tried to explain that while the staff and nurses were wonderful, it was time-consuming and took chunks of time from other things for two days each week. I also do not need this social contact, since I belong to many different organizations including church, writers club, book club and committees, and have other friends I see frequently. I thought to myself about the scar tissue developing where I get my blood drawn. I am tired of commuting, then fighting at the local hospital for a place to park, going through the COVID-19 protocol, going to the infusion floor, and often taking half an hour for shots that take five minutes. This is easy compared to what most cancer survivors go through, but it is also tiring.

I honestly do not think they were being insensitive. My sister recently sent me a great article, “

The author explains that toxic positivity is defined as “The belief that, regardless of how unfortunate or dire a situation, maintaining a positive mindset is paramount.” The article reminds us that feeling bad is part of our evolving emotions in any kind of loss, ranging from a job loss to a losing a loved one to being diagnosed with a serious disease. All many people want is validation. When people try to induce positivity they often shame the person despite having good intentions.

I have honestly learned so much on this cancer journey. I used to be one of these people who caused toxic positivity. Now, when friends face a terrible loss of any kind, I simply say, “I am sorry, I am here for anything you need even if it is to sit with you and hold your hand.”

Being cheerful is a good thing, until it is not. I am sure every one of us cancer survivors has our own story about the insensitive comments people have made to us. We need to understand where they are coming from and resolve not to do this to someone else. We of all people know that sometimes, just being there and listening is all other people want or need. And we can do that!

A cancer survivor describes how frustrating it can be to experience toxic positivity.

Why Cancer Survivors Cannot Always Be Positive

Please Quit Telling Me It’s Not the Cancer

.”It talked about how many side effects come from cancer and treatments, and doctors not recognizing or admitting that to patients.

I have a slightly different perspective now. Yes, many side effects are caused, and I know I became even more convinced when I heard about the long-haul patients who are suffering unknown and unexpected side effects from COVID-19. Many of the treatments are recent, and researchers are continually finding more side effects and problems. However, these same treatments are keeping many of us alive.

Recently I noticed I was increasingly short of breath. In medical terms, this is abbreviated as SOB – and does not mean medical professionals are talking badly about the patient!

Initially, I thought my SOB was from the red cells not performing, which is inherent in my kind of cancer. It became worse when exerting myself or in bed to go to sleep. I finally mentioned it to my internist, who immediately ordered a chest X-ray. Before I arrived home, a call came from her staff asking me if I had ever been a smoker. My answer was no, then they asked me if I had been around secondhand smoke, and again, the answer was no. I asked why they were inquiring and they told me my lungs were slightly enlarged. The doctor was considering a referral to a pulmonologist or a pulmonary function test.

As I began to get scared, tingling started all over my body. To me, this felt like déjà vu. When I was diagnosed with cancer over 10 years prior, I was blindsided.I never dreamed it was cancer since I was sure the anemia was related to one of my frequent infections. When I found out it was incurable cancer, my life changed drastically.

Now I was certain the SOB going to develop into something far worse. Would it be emphysema, chronic obstructive pulmonary disease (COPD) or another lung condition causing me to drag around an oxygen tank? My vivid imagination began to work overtime and I went to the worst scenarios, a total opposite of my blasé attitude 10 years ago.

By the time I saw my oncologist, I had worked myself up into frenzy and was in tears. She was very empathetic and told me that even if it was emphysema, this had no relation to myelodysplastic syndrome (MDS), which is my type of cancer. She finally got me calmed down and ran a pulmonary function test and an echocardiogram to rule out any serious problems. By a strange twist of fate, I had acquired a prolonged and nasty sinus infection lasting for three weeks, which was making my SOB worse. Once the tests were administered, the infection subsided, and I calmed down, the SOB was much better.

I am still short of breath, but it is not anything I cannot handle at this point. My fears gradually dissipated and by the next appointment I was much better.I remarked to my oncologist that I thought cancer would probably get me before the lungs and she agreed.

Once I stopped stressing and sat back, I realized I was not in another nightmare. I didn’t have another awful side effect. I just needed to relax and go on.

I think we cancer survivors should not be hard on ourselves. We realize how short and precious life is. We know people who were diagnosed with cancer and passed from something else. Others live longer than anticipated. Diseases like COVID-19 came along and scared all of us. Life is a gamble in many ways and we’re never certain how the end game will play out. What we do know is that we have today and need to grab on to that and make the most of it!

A cancer survivor recalls the scary moment she experienced what she thought was a new life-threatening side effect.

It Is Not Always the Cancer

I think I am typical of many people who suffered from isolation and lack of social opportunities during the COVID-19 pandemic. I couldn’t wait to join the world again. I know when the pandemic and the lockdowns started, none of us realized it would be 14 months before we began a semblance of normalcy. Generally, when it comes to social situations and going out, I am like a steamroller blasting full steam ahead and extremely enthusiastic.

But – wait. Experts and psychologists warned us that it would be more difficult than we thought to return to our former routines. They warned us about the dangers of going back too soon and to be careful. Mixed messages were being given concerning masks and social distancing. We were told we needed to adjust mentally and physically. This became much harder than most of us thought it would.

We cancer survivors have an extra burden because of compromised immune systems and the necessity of keeping medical treatments and appointments just to stay alive. We have to go out in many instances but be more careful than most people.

Additionally, those of us with incurable cancers want desperately to see our loved ones again, because of the marching on of time. We ask ourselves how many more opportunities we will have with our loved ones. I know all of us are aware of this to some extent, but it seems more acute when diagnosed with a deadly illness.

To my surprise, in some ways I felt like it was easier during the lockdown because we were being told exactly what we could and could not do. But it was also horrible, and we missed seeing and hugging friends and loved ones, especially those living in nursing homes and assisted living facilities.

Presently, I am getting an avalanche of people wanting to see me for the first time in over a year. I have to decide (except for medical appointments) whether to wear a mask or not, whether to be in large crowds, whether or not to hug people, and most of us are still sanitizing. I know some people who are so traumatized they still aren’t going out to restaurants or any social events. Others are avoiding crowds and sports events. Churches are offering a plethora of options from online to in-person with masks to being completely open.

I have to be honest and admit that while I am social, I sort of miss the excuse of not going out nearly every single night. I became very comfortable with Zoom. I think part of it is the fatigue from my cancer, which I hate to talk about. I also have a profound hearing loss and it is very difficult to understand conversations, and I am constantly frustrated from missing a lot of conversations.

Probably most of us do not want to be home and unable to go out. It was horrible not being able to celebrate special events and holidays with loved ones. We also do not want to move like freight trains mowing down everything and everyone.

I call it tiptoeing. I go out frequently to meet friends. I joyously attend church. I am going to postponed wedding celebrations once again. However, I am waiting to travel, to go to a baseball game, and do not know if I ever will feel safe on a cruise again! Meanwhile, I am just grateful to be able to see my loved ones again, and isn’t that what life is all about?

A cancer survivor explains how she is approaching her reentry into the world after COVID-19 restrictions have been lifted.

How Do Cancer Survivors Tiptoe into the World Again?

Every year, CURE® asks the cancer community to nominate a favorite oncology nurse. I never have been able to do this and the reason is positive. Every oncology nurse is special – how can I possibly nominate just one?

I have been going to the infusion floor every week for the past several years to receive shots to bolster my red and white blood counts. Previously, I went in for for shots in the stomach five days in a row every month for two years. I see my oncologist monthly, along with her great staff, and have gone there for 10 years. My oncologist is fantastic and very spiritual, which is a perfect combination for a cancer doctor. Her staff picks up on her positivity. I am convinced she has kept me alive longer than anyone else would have.

There have been so many nurses who helped me during this long journey, and I miss some of them who switched to other hospitals or retired. I remember going into the cancer center the first time I knew I would have to get two shots in the stomach. I did not sleep at all the night before. I was petrified, because my doctor had warned me that this was rough chemotherapy and I had been forced to give up the part-time teaching job that I loved. One of the nurses and a technician spent over half an hour explaining the side effects and what to expect. This made it infinitely easier for me. The nurse told me she had been there for 18 years and had taken care of patients for that long. She loved her job and enjoyed meeting nice people and being able to help them! I had another nurse tell me she has been doing this for 38 years and told the student nurses to consider this career. She even went to calling hours for some of her patients after they passed.

After I began the shot treatments in my stomach, my doctor had to go to India because of the death of her father. Another nurse kept in touch with the doctor about the side effects I was having by communicating across the ocean.

I cherish the nurse who looked at my stomach when I was having a bone marrow biopsy and said I needed to tell my oncologist. I was having a rebound effect from the shots and had to stop the chemotherapy immediately.

I started weekly shots in the arm through the dreaded COVID-19 pandemic. The hospital was almost totally shut down, with gift shops, coffee shops and many services completely stopped. I would only pass staff in the halls, since visitors were not allowed. This was eerie for me. All unnecessary services and surgeries were postponed.

What truly struck me was watching the nurses on the oncology floor. Their faces were stricken when they described how worried they were about the patients who were forgoing chemotherapy because they were scared to come to the hospital. The medical staff was afraid this decision would be fatal. Some of them told me their spouses were staying home with their children because the partner realized nursing was “more essential,” and knew the nurses were helping people.

One nurse told me she stopped at a grocery store on the way home, and someone yelled at her for coming in there and putting other customers in danger! However, others came up and thanked her. None of us will ever truly know what these heroes went through when they came in every day, endangering their own lives because of COVID-19, trying to have their families taken care of and worrying about the patients.

Recently, a nurse told me she had transferred from the COVID-19 floor to the infusion floor. She was humble as she said that she was grateful for the experience of working there serving COVID-19 patients, but also enjoyed the challenges of working with patients who needed chemotherapy and other treatments.

One day, I entered the floor distracted and upset because of some additional health issues. A nurse took one look at me and asked what was wrong, put me in a private cubicle and talked to me. I asked her how she knew something was upsetting me and she said my eyes above the mask told her.

Because I am profoundly deaf, I need the nurses to wear special masks so I can lip-read and they do it no matter how busy they are. Their patience is boundless.

I am also fortunate to be on the patient advisory committee at my cancer center. I have had a chance to work with the administration and nurses there. I observe these supervisors putting in long hours, weekends and evenings to sponsor meetings and benefits to assist with building a new cancer center.

These nurses have become an integral part of my life and I am truly appreciative.I could never get through this horrible disease without their support, both physically and mentally. How could I nominate just one?I would love to nominate every single one of these fantastic people who are my angels on earth.

A cancer survivor describes how oncology nurses have had a deep impact on her during treatment.