The Emotional Impact of Blood Cancer

The best advice I ever got from another cancer patient was this: It’s OK to have a bad day. As cancer patients, we all have those days. Our minds can get hooked on something negative, and it gets the better of us. Sometimes we need to be reminded that bad days happen, and we are allowed to let them happen. I had one of those days last week. My oncologist moved out of state in May, and it was time for me to find a new oncologist. I called the cancer hospital nearby, and my call was transferred between offices three times. Then I was told I couldn’t see the doctor I wanted to see because he doesn’t treat lymphoma patients. (The hospital website says he does.) A five-minute call took over an hour. I hung up, frustrated. Usually, it would be a small annoyance, but it got to me, and I was in a funk for the rest of the day. I couldn’t get cancer out of my mind, and my thoughts drifted to lots of bad scenarios. The problem with positivity As cancer patients, we get told a lot that we should be positive. When I was first diagnosed, and when I went through treatment, people would tell me all the time, “Stay positive!” It’s one of those things that people say when they don’t know what else to say to a cancer patient. They mean well. I think it makes them feel less helpless. The problem is, some days we just don’t feel like being positive. For whatever reason, we wake up and know it’s going to be a bad day. But we are given that message of positivity so often that we can end up feeling guilty. We’ve shown weakness. We’ve dropped our guard. We think we let ourselves -- and other people -- down. Now we feel bad, and we feel guilty on top of that. It’s turned into a doubly bad day. The full advice Here’s the full advice that my fellow cancer patient gave me. I think it’s worth sharing: Of course you should try to stay positive. But it’s OK to have a bad day. We all have days when we don’t have the emotional energy to face the world. We’d rather just stay in bed. So when you have one of those days, do what feels right. If you want to stay in bed all day and eat ice cream and watch old movies, then do just that. And if you wake up the next day and you want to do it again? Well, now it’s time to talk to someone. That someone might be a caregiver, or a friend, or the folks in a support group. Just talking might help you work through whatever is getting you down. Sometimes a sympathetic ear can make a bad day better. But if a bad day turns out to be three bad days, then maybe it’s time to get help, maybe more help than a sympathetic ear or a dish of ice cream can provide. If that’s the case, your oncologist or hospital might be able to tell you about mental health services that are available. The important thing is to recognize when that one bad day might be turning into something more. Stay positive. But... So, yes, stay positive. As cancer patients, we should remember to look for the good things in our lives. Positivity is healthy. But just as important, let yourself have a bad day. That’s healthy for you, too. The night of my bad day, my wife brought home ice cream, and we snuggled and watched Netflix. The next day was better. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] "You Are So Brave!" How often have we heard this said to us? Most times, people truly mean well when they say this. They are doing their best to be encouraging from their perspective of things. However, for many of us who are surviving cancer daily, those four words are filled with so much pressure and expectation. When people see us maintaining our lives, managing families, enduring all the craziness that comes with living with this disease, they see bravery! Well, there is truth to that. But the real truth is we are just giving our all to live every day and live our best! It takes a lot of work just to maintain our "normal" lives. Am I a superhero? Indeed, we are strong and courageous. We fight uncommon battles for our lives absolutely every day. However, knowing that people can see you as this 'cancer superhero' and being given this subconscious permission to be brave, #BeatCancer, #KickCancersButt, #FightLikeAGirl, and all the other awesome hashtags can be overwhelming! We didn't choose this fight We definitely appreciate the love and encouragement! But the reality is that some days we are just SICK! There is nothing we can do about it and to be honest, we don't even have the energy to do anything. We get weak. Not tired, but fatigued; downright exhausted! We have mood swings. We battle depression and sometimes it actually fights back...and wins! LOL!!!! We deal with feeling isolated and alone. We are oftentimes in pain. We are in agony and it doesn't always go away. Some of us live in pain. We lose weight and we gain weight! We lose our hair, our precious hair! Until you have experienced this, you just have no idea what this does to someone. We think about our mortality more times than the average person does. Tell me it's going to be okay! So it's not that we don't want to be told we are brave. Here is the thing, we know living with cancer requires a special measure of bravery. We know we are brave. But it would mean so much more if we heard, "It's going to be okay", "it's ok to feel how you are feeling", or "no matter how you feel today, I will be here to help and support you!" I think our loved ones believe they keep us strong by coaching us through this and pushing us. If they just speak positive and keep us thinking about how we "should" think then we will feel and live how we are supposed to. Please remember we are human beings with real feelings, who happen to be surviving cancer daily. Just let us be that, that's how we are Brave! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Numerous stressors are faced by a cancer survivor. Add to that family discord and the result can be disastrous. I experienced this first hand when that combination factored into my hospitalization after receiving my first chemotherapy treatment. I had to learn to better cope with everything happening in my life. I found that the biggest cause of stress was rooted in my own thoughts, feelings, and actions. I recognized that I was not responding well to changes in my life, was overworked, and fatigued. While I had taught stress management as a course, I clearly did not follow my own advice. Stress relief strategies We often cannot control external changes and circumstances life brings. We can reduce stress by learning to modify our inner response to life’s changes. I decided to try a healthy lifestyle and implement the following stress relief strategies. Breath slowly and gently I recognized that when under stress I became tense with shallow breathing. Now, I try to take slow, gentle breaths, which I find very calming. Practice prayer and meditation Set aside a quiet time. Think about what is right in your life. This gives a renewed sense of clarity, purpose, and peace. Balance work and play Allow time to do things that you enjoy. I treated myself to reflexology sessions, which I find relaxing and later learned that it may improve my immune system. Just move While I am not an exercise enthusiast, I found that time spent at the gym, walking with a friend or just simple exercises, helped relieve stress and helped me relax. Use aromatherapy This ancient pure route is a natural stress reliever. Aromas are said to register directly into the emotional center of the brain. I use a diffuser at night, which promotes restful sleep. Stress relief massage This soothing tactile relief can soothe and reduce stress as the mind and body are connected. Check with your doctor if any areas of the body should be avoided during massage therapy. Humor Share jokes and remember to laugh. Listen to your favorite music I find classical music to be filled with gratitude and peace and most relaxing. Nurture kind, compassionate, loving relationships Surround yourself with positive people. I have learned that we cannot change others, we can only change how we respond. Make a plan It is important to develop a stress management plan. While I do not complete each of these every day, they are the components of my toolbox that have helped me deal more effectively with stress. It is my hope that my fellow cancer survivors may find these helpful. It would be interesting to hear other strategies that have been found effective in reducing stress. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] In a perfect world, our paths would not have crossed. Sarah was an X-ray technician, and Andrea was a nurse. I was a math teacher. Even though we lived in the same area and were around the same age, we were complete strangers. And if not for cancer, we probably would have stayed that way. Cancer brought us together We met at a support group for cancer survivors - a group arranged specifically for the three of us ladies. None of us had much interest in the regular cancer support group in our area. Most people in that group were at least two decades older, and nearly all were retired and married. The three of us were single and had recently left our successful careers due to our diagnoses. We were figuring out how to navigate cancer and its chemical and financial side effects while running a household by ourselves. We each had a different disease, but we had all been deemed either incurable or terminal by doctors. Every two weeks, we ate popcorn and drank tea while we talked, laughed, and cried. We discussed clinical trials, health insurance, and finances. We compared electrolyte drinks, wigs, and compression stockings. We dreamed about possible futures, cures, and miracles. Tissues in hand, we also talked about the things that scared us the most: health care directives, wills, and the children and beloved pets we would leave behind. Cancer broke us apart When the pandemic hit, we stopped meeting in person but kept in touch. Sarah and I texted back and forth on who we hoped would (and would not) win Peter’s heart on the Bachelor. But as her treatment options grew fewer, so did our texts. She passed away less than two months after our last meeting. Andrea and I then tried to keep our tiny group of two going, but she quickly grew too tired and weak from her treatments. The last time I saw her was when she dropped by one afternoon to borrow my walker. She passed away while in hospice care right after Christmas. Why am I the one still here? I am so grateful to still be here, but why can't they be here too? Sarah should be watching this season of the Bachelor with her daughter, blowing up my phone with emojis about all the drama queens. And Andrea should be cooking, traveling, and snuggling with the cat she considered her true soul mate. Why am I the one with the time to do all of the things on their lists? Sometimes I wonder why I agreed to join this support group in the first place. They had active cancer, and I was in remission. They were close to the end of their journeys, and I was just beginning mine. From the start, the odds were good that I would be the last one standing. Feeling guilty for not feeling grateful I do not feel guilty for surviving longer than they did. If the tables were reversed, I would not want that for them, and I am certain they do not want that for me. But I do feel guilty for not feeling more appreciative of my life at times. I can still take for granted the simple things that are really everything. I can still get hung up on the should haves of the past and the what ifs of the future. I can still feel hatred for rude people, politicians, and the catty girls on the Bachelor. How dare I feel lonely, hopeless, annoyed, depressed, and sorry for myself when they would give anything for just one more day to experience life just as it is. Just as it was. I have a choice how to look at each day But I can choose to look at each day as the gift they desperately wanted to unwrap. Both ladies taught me what courage truly means. They showed me how to share and hope and dream -- and even laugh -- while dying. And they showed me how to love and support a new friend with a better prognosis, even in their last few months on earth. In loving memory of Sarah (7/11/78-4/22/20) & Andrea (11/9/77-12/29/20) Read more about survivor's guilt [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Cancer is such a mercurial illness. One day, things could be looking great, and the next, the entire diagnosis could change. It’s like the roller coaster at the county fair – it’s definitely as unsafe as you think, you didn’t want to get on in the first place, and now you’re stuck riding it with a teen mom hopped up on moonshine at the controls. So, you know, good judgment all around. The best you can do is hold on for dear life and do your best to enjoy the ups and make it through the downs and, overall, survive the experience. We all know the physical symptoms of cancer. The fatigue that makes you feel like you’ve been chained to a lazy elephant who thinks you got him fired. The nausea that makes you wish you could have just eaten day-old warm fish with mayo instead. The mouth sores that make you feel like you ate a swarm of angry bees who thought your tongue was a whale they needed to harpoon. The list goes on and on, and as anyone who went through cancer and chemo can tell you, they only get weirder from there. Weirder, more annoying, and much more painful and disruptive. The emotional toll of cancer What gets talked about less is the emotional toll that the ups and downs of cancer take on a person. Imagine not knowing how you were going to feel every day, with the Sword of Damocles hanging over your head, almost literally, every night you laid your head down to sleep. I haven’t had that many sudden changes of emotional fortune since I dated two girls in high school at the same time who were also best friends. I even got away with it for almost a month before I got caught (even I was surprised it took that long). OK, yes, I was a jerk, but in my own defense, I was also really good looking, so, you know... evens out? Of course, I’m kidding, (except for the good looking part) but the emotional shifts when you have cancer are at that level – the raging hormones, everything is the end of the world, O-M-G he is such a jerk, degree of significance. Any given day you wake up and things are going well, you feel like you might be finally beating this horrible disease. You go to the store, do a few things, and then the phone rings. You look at your phone and it’s the doctor’s office. Anyone who is ill knows what happens when that phone rings and the doctor’s caller ID pops up – your stomach drops into your feet and you dread picking up. Like not wanting to start the last episode of your favorite show that got canceled, you just assume it’s bad news. After all, why would your doctor take time out of his busy golf game, I mean day, to pick up the phone and call. It’s not like you can even get him or her to call back when you actually need something, you know, like lifesaving medication or to report a new potentially serious symptom, so them calling you must be bad. You pick the phone gingerly like it’s a baby bird with a broken wing that conversely may also bite your face off, and say, “h-hello?? What? Oh no. Really? OK..” and just like that your emotional state that was actually halfway decent for once has been shattered into a million pieces. The tests came back and something might be rearing it’s ugly head once more. Your emotions can shift quickly That’s how fast emotional wellbeing can shift when you have cancer, and it doesn’t just happen once, it happens many times over the course of a week, a month, a year, Hell, even over the course of a single day! It’s like living with an angry raccoon – when he’s happy and content he leaves you alone and you can almost forget he’s there and sometimes he almost looks cute enough to pet. Unfortunately, as soon as you run out of fish tacos (I have no idea what raccoons eat) he starts hissing and running around being a terror and scaring the pants off you. You do your best not to anger the angry raccoon, but no matter what you do sometimes he just doesn’t want fish tacos. That’s how fast the ups and downs of cancer can affect your mental state. At the speed of angry raccoon. Distracting myself when "mind demons" creep in What to do when it happens? Well, I can share some of the things I do. First, when I realize that my mental state is slipping and what I call the “mind demons” start creeping in, I instantly run to distractions. Video games, singing, doing my work for Health Union which is always on time and wonderful – it doesn’t matter. Anything that takes my mind off whatever bad news or “what if” spiral is trying to break up my happy. Of course, that’s only a temporary fix, but sometimes it’s just enough to pull out of the skid. If that doesn’t do the trick, then I try to pick something in the future I am looking forward to and think about that – a TV show coming back, a package arriving, the fact that I’m going to be even more Internet famous one day – whatever I can think of. Finally, when I’m lying in my bed that night and things still feel awful, I just tell myself, “you never know what’s around the next corner,” and it’s true. I can’t tell you how many times in my life something has unexpectedly come along and within a week or two I don’t even remember what life was like before. These methods take practice, but they work. Cancer and emotional health go hand in hand, it’s been studied ad nauseam. It’s difficult, though, not to fall into those troughs, and you will. It’s true, you’re going to falter, we all do, and it sucks, but you’ll get better at getting back out. After all, you can’t get better at something without practice. Now I have to go buy some fish tacos. Talk soon. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Now that my wife and I are empty nesters, we’re making grand plans for what to do with our time. Travel is a big part of our plans, and we have some “bucket list” trips that we’d love to take. Dreaming about our travel bucket list At the moment, most of our time is spent in the dreaming stage. We’ve subscribed to some travel magazines, and we’re enjoying looking at pictures and reading about other peoples’ adventures. One of the articles I read recently was by someone who had visited the Galapogos Islands. As it happens, that’s on our "List of Cool Places to Go. No people live on the islands (though lots of people visit and admire what they see). Because visiting humans never harm the animals on the islands, the animals mostly ignore the humans. The writer of the article wrote that the naturalist on her tour explained why this is so: “'They choose not to fear at all,’ Tomala said as we turned to the other side of the trail to observe another blue-footed booby sitting on two eggs resting in a depression in the dirt. ‘Being fearful requires energy, and everything in life is energy. If you don’t have to fear, there’s no point in being fearful. So what they’re doing is saving energy, because here they can afford it.’”1 Fear after my follicular lymphoma diagnosis That phrase really struck me: They choose not to fear. I thought about the times I’ve been struck by fear over the 11+ years since my follicular lymphoma diagnosis. Sometimes, it’s a hard, fast, but fleeting fear, like feeling a bump you maybe hadn’t noticed before. And sometimes it’s that long, slow burn of fear, like the one I felt after I was diagnosed. Like the blue-footed booby and the sally lightfoot crabs of Galapagos, I know that fear can suck the energy out of you. For two weeks after I was diagnosed, I stumbled through each day. I’d burst into tears every half hour or so, worried about my wife and kids. I spent as much energy hiding my tears from them as I did anything else. My question is, can you really choose not to fear? Can an emotion so intense be a choice? Can you just turn off that spigot? Working through the fear Maybe not immediately. That initial burst of fear comes whether you want it to or not. But we can choose what happens after that. We can take action to reduce that fear. We can join a support group, whether it’s in-person or online. Sharing our story, and hearing others’ experiences, can help us understand what our path might be. We can educate ourselves. Learn what we can about our disease. Knowledge helps combat the fear. Exercise. Meditate. Eat healthy. Do what we can to save our energy for the things that matter. And if that fear stays with us, even just a little, that doesn’t mean we have to be paralyzed by it. Moving forward with courage We can still move forward, even with fear, but also with courage. Because courage isn’t about not being afraid. It’s about having fear and moving forward anyway. Which is an excellent use of our energy. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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