When you are diagnosed with cancer – people give you the most sympathetic responses. A cancer diagnosis brings out the good in many people. They send you thoughts and prayers. They want to see you or talk to you. They send you flowers or other gifts. They bring you food or bring food for the family. They message you. They offer to drive you to appointments. They offer to run errands for you. They will even create fundraisers for you or the family to help pay for medical or living expenses. Some will go as far to donate blood or something else that is needed by the affected person. This is all wonderful and many of these things were done for my benefit when I was going through lymphoma treatment seven years ago.
Eventually you get through treatment and return to “normal” life except it is a new normal. Other people continue their lives as before but you will never be able to do that. You are never what you were before. In some ways this is a good thing. What I was before included walking around with cancer in my body apparently for many years, undiagnosed. TOO MANY YEARS.
What has changed is that you have to live your life, the one that was graciously spared, with the cancer experience in the rear-view mirror. But this is extremely hard to do. It takes every ounce of mental strength to NOT think about it constantly. The biggest thought in every cancer patient’s head is – IS IT GONE AND WILL IT COME BACK? How can you NOT have that thought?
The doctors want to keep surveilling you with appointments and tests. And when you go to a medical appointment for something seemingly unrelated – they will tell you that you are more susceptible because of your cancer history/treatment. Personally, I have known many people who have subsequently been diagnosed with some type of cancer since my diagnosis, some who have passed away from their disease. Some of these people I knew as clients, some were friends or acquaintances. Cancer is in the media all the time in one way or another whether it’s a celebrity who passed away, new findings about causes, new drugs, triumphs, fundraisers and latest statistics. And a total of 1.9 million new cancer cases and 609,360 deaths from cancer are expected to occur in the US in 2022, which is about 1,670 deaths a day, estimates the American Cancer Society. Someone you know is bound to be diagnosed with cancer this year.
The good news is that more people are living longer after a cancer diagnosis. There has been a 32% drop in the cancer death rate between 1991 and 2019. This is due to a number of factors which include smoking rates going down, earlier detection, and “better” treatments. Of course the treatments have their own array of issues – including damaging the immune system that is supposed to protect you from developing future cancers and/or against pathogens. I am in this group. While the chemo saved my life 7 years ago (I was so advanced and surely would’ve died if not treated right away) – it left me severely immunocompromised and susceptible to infection and future cancers. In this age of the pandemic – this is exceptionally cruel. It leaves me to live a life of depravation of some of the most simple things – like gathering with friends, going to a celebration, food shopping, travelling, or even sitting in a coffee shop.
Aside from treatment side effects that last a while, perhaps forever – there is the mental aspect of the cancer experience. Going to my primary care doctor’s office is a perpetual throwback to the morning my husband and I were called in and I was given the news. Waiting for blood work is tremendously anxiety-provoking. My now annual visit to the oncologist and the Cancer Center requires several weeks prior of mental preparation. My resting heart rate jumps about 40 beats on average for the entire time I am there. Every new physical symptom becomes a question of whether this is somehow related to my previous lymphoma, a fallout from the treatment for my previous lymphoma, or some new cancer developing. For example – yesterday morning I blew my nose really hard and I had a nosebleed on one side. When I got it under control – I called my PCP and the first question I asked was “Could this be related to my lymphoma or treatment? Is this a sign that my cancer is back?” He kindly reassured me that since my blood work was near perfect a couple of months ago that no, it was probably due to allergies or dry air but if it happened again, I may need to see an ENT to get cauterized.
You need to understand that I was misdiagnosed for 15 YEARS with various symptoms that doctors brushed off, made excuses for or simply said we don’t know why it’s happening so go home and live your life. I started showing signs that something was off in 2000 when started developing rashes to cold temperature (cold urticaria). After seeing various doctors and being tested over the years – no one ever found that I was developing lymphoma until I developed a retinal hemorrhage in my left eye and went right to my eye doctor. She knew. She sent me right over to a retinal specialist who wrote me a script for a physical which then led to my White Blood Count (WBC) of 240,000. This is incompatible with life. All sorts of other numbers were thrown off as well. I was an emergency and thrown right into the hospital from my doctor’s office and that’s when my cancer experience really began.
It’s hard not to remember back to all of this when something triggers these memories like going for bloodwork, hearing of someone passing away from cancer or having a nosebleed. Sometimes you are sitting alone in quiet time or in your bed at night and the memories come up without a specific trigger. The anxiety can sometimes be overwhelming and can take over your life. You can’t eat, you can’t sleep, you can’t think properly, you feel that every symptom is your cancer back again. Your thinking becomes catastrophic. It can be unbearable. This is a form of PTSD called PTS for Cancer Patients.
So how do I deal with all of this? Honestly some days I do better than others. The American Psychological Association (APA) recommends four main strategies for dealing with PTSD. This includes PTSD of any sort – not only medically related. These should be done with a licensed therapist, which I am doing weekly. My therapist keeps me on the right track when I start to go down into pessimistic and exaggerated negative thinking. I mentioned earlier that there is actually a name for what I am feeling specific to cancer patients (current and former) called Post Traumatic Stress (PTS) for Cancer Patients and the specifics are outlined here by the National Institutes of Health. The treatment is similar to PTSD.
Practically speaking – in addition to working with my therapist – I do things on my own that help. One thing is that I talk about my experience. In some ways I am “fortunate” because as a health coach and owner of a wellness center – it is literally my job to talk about health. If worked in IT – I’m sure people would appreciate me talking about my bloodwork all day. A fair amount of people seek me out after hearing about my illness and successful remission, when they or a loved one has been newly diagnosed with cancer. Talking about my experience and not keeping it buried inside is critical for dealing with trauma. When I was able – I did talks at my Center discussing what happened to me will my illness before during and after and what went wrong and what went right. Sharing my experience helps others as well as helping myself.
Something else I do is to keep up with ways I can mitigate the effects of previous chemotherapy and prevent recurrence of cancer. I read and watch evidence-based health information that focuses on keeping healthy in a drug-free way. My goal is to be in the best possible state of health so that cancer (or any other illness) does not want to exist in my body. This involves all the aspects of living a healthy lifestyle that I talk about over and over again. When I put something into my body – I ask is this something that is going to help my state of health or hurt it? Nutrient-dense, whole plant-based foods are the mainstay of my nutrition. I also take lots of supplements – many are anti-oxidants that help protect normal cell function and help to mitigate cellular damage. We are only as good as the health of our 40 trillion or so cells and I want to protect them as best as I can. Cancer is literally a disease of cellular damage out of control – but in reality – all disorders link back to cellular dysfunction and damage – much caused by inflammation.
Exercise is important too for a number of reasons. It helps keep you at a healthy weight – which mitigates all kinds of problems such as Type 2 diabetes, high blood pressure, cholesterol imbalance, arthritis, stroke, and cancer. It helps to reduce anxiety and depression. It builds muscle which helps to increase the number of mitochondria in the cells (this is where your body’s energy is created). It brings more oxygen and nutrients into your tissues. It promotes better sleep. It is one thing my oncologist would stress at every visit – exercise, exercise, exercise.
For more about my healthy lifestyle see my previous blog post The Greatest Health is Wealth.
By taking care of myself as well as I can mentally and physically – I can lessen the impact of the trauma from my cancer experience. Being in remission or even being “cured” (they don’t say that often) from cancer isn’t the end of the experience. It is a new phase of the experience. Hopefully in this new phase you can enjoy the gift of life you have been given and not let the trauma of the experience significantly impact your future. If this is you right now – I hope I’ve helped in some way.
Wishing you good health and a great life-
Sheryl
