I am a positive person. I am not doom and gloom. Hope is a theme that is front and center in most of my thinking and plans. I believe a positive perspective increases my chances of success in whatever I endeavor. It isn’t that I have to exercise; it’s that I get to exercise. The snow is still the same amount whether I like it or not. I choose to enjoy it and cross country ski when I have the chance. I am not trapped in my home all these months during COVID-19. I am safe.
Living with metastatic cancer makes seeing the bright side harder. I usually am still able to see it. I am grateful I don’t have to work while trying to manage my health. I have a home where I’m more than comfortable. I feel so fortunate to be near top-tier health care. Yet, life isn’t all bright and shiny and lucky me. I still have cancer and cancer sucks. Sucks hard. But I’m still here and that fact is pretty sparkly in my eyes.
I experience the dark. When I’m there, I know that’s where I need to be for a period of time until I’m done with the darkness. IF it’s something I share, and that’s a big if, I need people to acknowledge how crappy the present moment is and that they also feel bad about what’s happening. I do not need to hear Pollyanna BS. Sometimes I need an objective viewpoint, but objectivity isn’t necessarily overly positive.
I have seen comments lately from a few who live at Our Lady of the Perpetually Positive on social media when someone else in the cancer community is in the dark. It isn’t helpful to respond with some never give up mantra when someone is in deep despair about the latest development with cancer when things aren’t going well. A treatment isn’t working. There aren’t options to try. Someone is experiencing physical pain. It is torture to read such news.
People need space held for them in this scary unfolding.
I recently read one such toxic positive comment as a response to another’s bad news. The advice given was to be happy and positive. It’s worth noting the responder is a long time breast cancer survivor and doesn’t have metastatic breast cancer. Does that matter? I’m not sure. There still can be pain and permanent issues as a survivor. I can’t think of a fair comparison. I have a dear friend who is a two-time survivor of breast cancer. I know I can talk to her about things and she listens and responds sensitively. She would never tell me to be happy and positive when something has me devastated.
Perhaps it’s also worth noting this kind of “be happy” response is this person’s go to reply from other comments she’s made. She means well. I have no reason to believe otherwise. Yet, it’s repetitive. It rubs me the wrong way, so much so that I’m writing about it. One of us is missing something in translation. It very possibly could be me.
And yes, I am well aware that I can’t control how another person responds to something. I am used to people not responding the way I think they should in life. I can only control my reaction. There are plenty of opportunities in my life to practice how I react. This is one such opportunity.
So, what is an appropriate way to respond to this perpetual positivity? Perhaps it is simply to mind my own business. Some people have a gift with responses that honor what was said and still offer comfort and that thread of hope. That thread of hope is important to me. A lot of the time I don’t know what I can say that would help someone else feel heard and less alone. Most of the time I think I do okay. I’m more at a loss as to how I’d appropriately respond if I were to receive some of these over the top positive comments.
What is best?
Empathy/Sensitive: Thank you for caring. This advice is truly more upsetting to me than helpful.
Blunt: You so don’t understand. I’m unable to feel the way you are about my impending doom.
Expletive: One or two choice words may communicate feelings effectively.
Short and Sweet: Thank you. It acknowledges the original comment with gratitude and no judgment.
No response: Sometimes ignoring is a fine way to let go and move on. No response is a response. I remind myself I don’t have to share my every thought and reaction, especially if it may be something I could come to regret.
I can only speak for myself, but I would want supportive comments that meet me where I am. I posted a photo of my hand at the end of summer. I set a clear boundary with what I wrote in that I didn’t want pity, advice, or to be reminded I was tough. I wrote I wanted people to know that there were many of us who go around rather quietly but still have a hard time dealing with side effects of our treatments. I wrote more was needed for Stage IV. My friends knew it was uncharacteristic for me to share a hardship. Comments let me know people understood, that I was heard, that cancer sucked, and that I was loved. I didn’t get one single suggestion to go make lemonade with my lemons. Making lemonade would have been fairly hard for me since squeezing lemons would hurt.
There are also cancer magazines that emphasize coping positively with cancer. That’s perfectly fine as there is nothing wrong with positive thinking. However, it became a little less fine one day when I read one such magazine’s submission guidelines that stated they strived “to remain upbeat and positive. Therefore, articles about death and dying are generally not accepted.” I am deliberately not mentioning the name of the publication. I haven’t read many of their articles and want to give them the benefit of my doubts. Death and dying sure isn’t upbeat but it does happen in Cancerland. I have a choice whether I read certain articles and comments or not. Perhaps they aren’t coping too well themselves by forbidding topics that may upset readers.
As I said earlier, I’m not doom and gloom, but it strikes me as highly insensitive to tell someone to be happy when they share they are almost out of options. It is as inappropriate as peals of laughter would be if receiving news like this in person. There is a time for happiness and a time for sadness. There is a time for sunshine and a time for rain. There is a time to ditch toxic positivity and that time is now.
It is okay to not feel happy all the time.
Please leave a reply and let me know your thoughts on dealing with blinding comments from the sunny side.
the cold wind races
across the empty landscape
howling as it blows
I stand in a field
unable to find shelter
it pushes me back
cancer is that wind
causing damage everywhere
stinging my stunned face
I feel like the land
unprotected and ravaged
my body takes it
it runs rampantly
like an out of control storm
both inside and out
I may be alone
but I will stand against you
as long as I can
I’m not as easy
to knock down as you first thought
whipping cancer wind
I will push back hard
standing like a boulder with
granite in my veins
How much do I have to say about wigs? I’m not even wearing one thanks to my cold cap. Surprisingly, I still have quite a lot to say. I have four wigs. Three of them work well for me.
My experiences at the wig salon located within the Carbone Cancer Center have been wonderful. Over the last eight plus years, my stylist Stephanie has been warm, empathetic, helpful, and has made a real connection with me. She is interested in my life, not just my life with cancer.
Because of our friendship, I’ve done a couple of interviews recently to help promote the wig salon. My main goal was to emphasize the high-quality wigs and personalized service provided there. Inevitably, the reporters also wanted to talk about my story. Both interviews have happened when I’m not currently wigging which made them slightly awkward for me. I feel it pulls away from the focus of highlighting the wig program offered. It’s pretty easy for someone with hair to talk about her memories. I can’t help but think of myself as hypocritical. Admittedly, I do not understand when others walk down memory lane and sound wistful. I just don’t get it. Perhaps someone currently going through chemo induced hair loss would have told a more poignant story for my most recent interview. Anyway, I’ve tried in each of them to come back to the role wigs have had in my experience.
My last interview was done over the phone. I was asked how wearing a wig made me feel. Did it make me feel more normal? I knew what the student journalist was asking, yet normal wasn’t the right word. I know I’ve used the word normal before to describe how wearing a wig made me feel, but the thing is it’s all relative.
When I first dabbled with the choice to wear a wig or not, I did not wear one. I hated it. Wraps made me feel normal. Being bald from time to time made me feel normal. Later in life when faced with hair loss again, a wig made me feel more normal. Comparing these two situations, I figured out what I really meant by feeling normal.
Normal meant comfortable. At one point in my life I was more comfortable in wraps and scarves. Another time I was more comfortable in a wig. I was in different places with different comfort levels. Comfort in this instance means both emotional and physical comfort. A wig was a physical manifestation that brought me inner comfort. It was easy to wear.
There was safety in that comfort.
Digging deeper, I realize the word normal also correlated with a need for privacy. I wanted to go about my business without drawing attention to myself. Losing hair is such a public side effect of cancer. Wearing a good wig made me feel less on display. I was able to keep my private life more private to those who didn’t know me. I looked like everyone else and that is where the word normal fits because it is a norm for women to have hair.
There is also safety in that privacy.
Safety is a big thing for me. Cancer doesn’t make me feel safe.
Another question I was asked was whether wearing a wig made me feel more confident. I know I’ve also used this word in the past to describe wearing a wig. During the second interview, I realized confident was not the right word either. I felt the journalist wanted me to use it per the way she was asking the question. I also felt like I wasn’t giving her what she wanted, but I couldn’t agree with her if I wasn’t feeling it. In the end, the published article made only a passing reference to me with a supporting comment I provided about the wig stylist. That’s fine as the wigs and stylist really were the focus. I benefited from our conversation because I finally figured out my feelings on wigs.
Wigs absolutely can make someone feel more confident. Couldn’t they also make someone feel like a fraud? Again, it’s all relative. I struggled when someone commented how nice my short hair (wig) looked years ago in church and thought it was probably so much easier to style. Sure, it was easier, I took it off a wig stand each morning and that was pretty much it. But I said thank you and left it there. I didn’t know her well enough to confide more.
Confidence doesn’t hinge on whether someone has hair or not. I was confident enough being bald. I just didn’t want to be bald. I wanted to have options. It takes confidence to be seen without a wig and not a hair on your head. I was confident enough in wraps and scarves. It takes confidence to know you are rocking your wrap. Confidence is internal. I think it’s based on your personality and a person’s experiences.
If I had been asked about how metastatic cancer steals identity, I would have a lot to say. The same would hold true if I had been asked how metastatic cancer affects my confidence. My sense of identity and confidence have changed throughout my years living with cancer. Sometimes I’ve been a mess. Other times I feel I know a few things about myself and about life. I wobble. I reset. My thoughts can drive me crazy within the course of one day.
I have been comfortable in a wrap, being bald, and in a wig. I’m extremely comfortable with my own hair. Go figure. Normal is as normal does. Normal can be felt at each of these times. Everyone knows what normal feels like and yet it can be hard to put into words. I have felt privacy consistently only in a wig and when my hair has been long enough to be wild and crazy. Comfort and privacy go a long way in helping me feel normal.
Spoiler Alert: I voted for Joe Biden.
November 7, 2020 was an amazingly-wonderful-super-awesome-good-day for America. Yes, that’s how it’s written. I only added the hyphens to make it more readable.
I write this more for myself as a way to preserve my thoughts. It’s a mixture of facts and feelings. I want to remember what I’m feeling and thinking. My opinions are pretty clear. Stop reading now if you are disappointed in the election results. I hope you will read on because a Biden presidency can have positive effects for the cancer community.
Joe Biden will be the 46th president of the United States. Kamala Harris will be the first woman vice president. The race was finally called on Saturday around 10:30 AM (CT) from the national election that was held on Tuesday, November 3rd.
The election this year was extremely difficult. No one was sure how long it would take to get results and what would happen after those results became final. Millions voted by mail due to concerns about going to polling places during the COVID-19 pandemic. There were some concerns of violence. There were many attempts of voter suppression in cities that were likely to have a high turnout for Biden. The number of polling sites was reduced out of concerns of virus transmission but interestingly largely in areas that were likely to vote for Biden. I believe that is the real reason. U.S. mailboxes were removed. Votes did not get delivered in time because of illegal activities (in my opinion) by the Trump appointed U.S. postmaster general, Louis DeJoy.
Trump won’t concede. He’s filed lawsuits claiming election fraud. He claims the election was stolen from him. His claims are baseless. There is absolutely no evidence of fraud. Many GOP dominated legislatures wouldn’t let the massive number of mail-in ballots be counted early. Wisconsin was one such state that couldn’t get a head start on counting the number of returned mail-in ballots. There always have been allowances for mail-in ballots to be counted after the election. A high percentage of these ballots were rightly predicted to have been cast for Biden. Trump didn’t want them counted because he said they were late and illegal. Au contraire – they’re legal and cast very early. It is insane that people protested in some states to stop counting votes. Voting is literally what defines a democracy. Pennsylvania pushed Biden over the 270 electoral college threshold he needed to be declared the winner.
Thankfully, Wisconsin voted blue. Ten electoral votes for the Biden column. Truthfully, I struggle to understand how anyone voted for Trump. He wasn’t honest. He ruled like a dictator-child. Presidents aren’t meant to rule like a king or dictator. I heard Senator Mitt Romney (R-Utah) comment on a news program that the election was a referendum of a person and not of conservative principles. His point was conservative principles still exist and that is why republican candidates still did well in states that rejected Trump. He makes a good point. I don’t agree with the examples he cited on the environment, energy, and taxes, but I do see his point. I know I have a friend or two, plus some family members, who likely didn’t vote for Biden. Romney’s comment helps me understand them a bit better, not a lot, but a bit. I find it too hard to overlook Trump’s lack of human decency.
Biden won. Trump lost. The election is over. Finally. We must move forward.
Votes are still being tallied because every vote must be counted. Here are the election results from The Associated Press as of the night of November 8th:
Joe Biden with 75,253,350 votes. 50.7%
Donald Trump with 70,831,493 votes. 47.7%
The people have spoken.
Biden has received the most votes of any presidential candidate in U.S. history. He tried to be president twice before but didn’t receive the democratic nomination. He got it the third time and has won. Maybe he lost those other two times because this is when we need him the most in our country. Our country needs unity and many believe he can bring people together.
Kamala Harris will be the first woman vice president. It’s about time. Little girls are allowed to dream big. Big girls, too. What an incredibly strong role model. She is Black, Indian-American, and has made so many historic firsts in her life. It’s been a hundred years since women won the right to vote. Kamala Harris chose to wear white to recognize that work of suffragists in her acceptance speech. “While I may be the first woman in this office, I won’t be the last,” is one of many shining lines from her speech. America is changing for the better.
What does this mean for cancer? Both Biden and Harris are passionate about cancer research. The soon to be Madam VP’s mother, Dr. Shyamala Gopalan Harris, was a cancer research scientist. President elect Biden’s eldest son Beau died from an aggressive brain tumor known as a glioblastoma multiforme. Cancer doesn’t care who you are or your political affiliation. But it does matter who holds office and it could be transformative to cancer research. A Biden administration is good for the cancer community. Biden and Harris have the potential to prioritize funding and support for cancer research. Both of them will be hearing from me.
The country is still deeply divided. There is racism. There is hate. There are science deniers. There is a lot of entitlement and privilege. People won’t wear masks. Many say they aren’t willing to get a vaccine when available. A lot needs to change.
And yet, I’m hopeful.
I went to one of my favorite places, the UW Arboretum to celebrate the election outcome. There was a middle-aged white man standing on the corner of Mineral Point Road and Segoe Road holding a cardboard Dump Trump sign above his head. I wondered why he’d chosen that message and not one that was more pro Biden or democracy oriented, but I honked gleefully and gave a thumbs up as I waited at the traffic light. The car next to me then honked, too. I’m sure I could find revelers around the Capitol Square if I went there, but I wasn’t looking for large parties or protests.
Across the nation, people celebrated. It resembled a nation-wide block party. Thousands gathered in front of the White House singing and partying. They wore masks, as they should, but it was still a serious risk. They weighed the risk and decided the reward outweighed the risk. They belted out YMCA (so funny this has emerged as a victory song) and Sweet Caroline. Celebrations erupted from coast to coast. Many flooded the streets spontaneously. I saw one video where a crowd danced at a gas station. People looked so unapologetically joyful. New Yorkers banged pots and pans from their windows. Supporters danced and sang in the streets of Philly. I held my own dance party in my family room. I haven’t seen my country this happy for over four years. I am overjoyed.
The world rejoiced. Cathedral bells rang in Paris, France. There were fireworks in London. It says a lot if other countries are excited. I was happy when Angela Merkel and Jacinda Arden were elected to lead Germany and New Zealand, but there were no fireworks or street parties in the U.S. that I know of when that happened. No mass euphoria.
Inauguration Day is January 20, 2021. When Trump was inaugurated, I dubbed January 20, 2017, as a Day of Integrity. It was the one-year anniversary that marked the passing of a friend’s father. I suggested not watching TV coverage that day and watching videos of both of our fathers instead to celebrate our dads. They were good men – men who were loved, men with integrity, and men who are still missed. Our Day of Integrity was a good day. Loving memories replaced some of the sadness. Integrity in the nation will be restored on January 20, 2021. I will watch with pride.
I have a friend who works as an administrator in health care. She often shares with me aspects of wellness activities that are part of her work. Recently, she told me there had been many long days at the hospital due to all the planning that goes into protecting staff and patients from COVID-19 while ensuring the hospital and other facilities still operate effectively and safely. It’s a very demanding job, yet she describes it as also being a highly supportive work environment. She has shared with me creative challenge questions they are given each week. One week each person needed to share a sound that made them feel productive. She said it made people more mindful of the sounds in their environment all week long. A little extra mindfulness can make an enormous difference these days. My friend chose the sound of cutting fabric. She is a talented quilter, so this sound made sense even though it wasn’t related to work.
She also shared she liked the sound of a three-hole punch. A three-hole punch fits into her world of many papers at work. As a teacher, I liked the three-hole punch, too, although I think this friend likes it more. I still have a three-hole punch but rarely use it. It has a definite sound of accomplishment. It’s the precursor to placing final papers in a binder. I love binders but they are pretty quiet office supplies.
What would I have chosen as a teacher? Would I have chosen the morning bell announcing it was time to officially start my day with my second graders? Maybe the ending bell was a better indicator of a day filled with work, learning, and productivity. A pencil sharpener evokes mixed feelings. Often it was used to give the illusion of working hard when hardly working was the more likely scenario. Other times it represented the definite hum of worker bees in the hive of learning.
None of those sounds fit my present life. I still like the sound of an electric pencil sharpener. A newly sharpened pencil makes a soft scratching sound as it scrawls across a sheet of paper. It’s hardly perceptible but it’s there. I don’t do tons of writing by hand. I gravitate towards pens over pencils when I do. Even now as I type away, the keyboard clicks in a rhythm of spurts. Words appear, but I’ve never equated the sound of typing as being especially productive. I’ve never paid any attention to it. I’m being mindful of it now but think of it more as a means to an end. It’s the finished piece that makes me feel productive and that has no sound. When I’m done, I’m just done.
My home is pretty quiet. TV or music provides background noise. I’m not producing either of those. I don’t cook a lot, so the cooking sounds of mixers, knives slicing on cutting boards, and timers going off aren’t sounds that work for me either. I like the sound when it’s quiet. Silence has never bothered me. Seldom is there ever truly no sound. The clock that hung in my grandma’s kitchen ticks away in mine. I can hear that from the rooms off my kitchen. I find it reassuring. Comforting. Constant. Centering.
I enjoy being in nature where I can listen to birds sing and leaves rustle on trees. I can hear the wild turkeys forage as they move slowly in a cluster. A strong wind is exhilarating if it isn’t pushing against me. I’m not making any of these sounds. I just take them in and let them fill my soul.
How am I productive? What do I really DO anymore?
I’m a professional patient. Most things during treatment are done to me, not by me. Sounds are not any result of great productivity on my end. I sit the majority of my time at office visits and treatments, only walking to get from one area to the next. The infusion machine beeps when there is a problem or my infusion is done. I hear the whoosh of my cold cap filling with the magic cold that I wear to save as much hair as possible. Occasionally, I’ll hear doors of other treatment bays slide open and parts of conversations between nurses and patients. So much for privacy. About the only productive contribution I make is pressing the call button. I do that often to alert the nurses when I need to start the next phase of the scalp cooling process or there is an air bubble in the infusion tubing and the machine is beeping rhythmically because it isn’t happy. I don’t do very much. I show up and I endure, no small feats, but I don’t turn cartwheels while I’m there.
Professional patients still want to feel productive. We are quiet; we are vocal. We float in and out of appointments and visits; we dig in our heels and don’t make things easy for anyone while trying to get what we need that makes us feel human and a wee bit healthier. We say we are fine; we tell it like it is. We are grateful; we resent some things. We are individuals; we are part of a cancer community. We keep using our voices to push for action and not awareness; we know the number of women and men who die every day from metastatic breast cancer hasn’t budged one bit. Are we productive? Yes and no. There are no distinctive sounds that make any of these behaviors and feelings stand out.
I exercise. That’s an area of my life where I take ownership. Even this has changed no thanks to the issues I’ve encountered on this treatment with hand and feet issues. I’m aware I keep coming back to this in quite a few of my posts or comments, but I tell you, it has hit me hard. I hurt to some degree pretty much all the time with this treatment. Gripping tools makes my hands hurt. Gardening and yard work took a hit this summer. My first attempt at raking this season didn’t bode well for all I have to rake. My opposable thumbs have been highly oppositional. My poor elbows are skinned due to using them to push up off the floor when doing yoga or getting out of bed because pushing off my hands is painful. I work hard at walking, but I never know where my edge is and when I will have done too much. I only had blisters on my feet once, until last week when one the size of dime developed on the top of my big toe. My point is that a lot of the physical work that made me feel like I was being productive has been sidelined. I can’t run right now. I can’t lift my kettlebells. Walking is at a slower pace.
But . . . I have found a way to exercise differently. My coach has been phenomenal. I ordered a weighted vest and can load it up to sixty pounds if I want. Twenty pounds is a good amount for me. I can wear it walking around the house. An extra twenty pounds makes a noticeable difference. I will load more when twenty pounds doesn’t make me work hard. I climb stairs wearing it. I do squats, forearm planks, modified pushups, and some yoga poses. Over and over again. My core gets a workout. That vest pushes me. It makes me sweat. I feel alive and decisive.
The vest gives me control and agency. Putting it on and doing hard work is my choice. I know there will be moments I wish I wasn’t wearing it because it makes the work I’m doing lots tougher. It makes me feel like I’ve accomplished something and like I’m winning for a few minutes of my day. The vest makes me feel strong and proud of myself. I know I’ve had a good workout after I’ve used it. Feeling strong and proud are powerful feelings. I can do hard things. Hard things that make me feel good. Hard things that I choose. I am productive.
How do I know?
It’s the heavy breathing.
Heavy breathing is my sound that makes me feel productive.