Cross the Line

There are many times in life where people are just trying to get through the day. I am not up for attempting to change the world or my little part of it when I have one of these days. On other days I can be quite formidable. It was on one of these more rebellious days I heard a good old Johnny Cash classic come across the radio – Walk the Line. Do we do what Johnny Cash advises in this song and stay in middle ground area to play it safe? There are advantages to not creating a fuss and staying socially accepted. Respecting boundaries is huge with me. I am not looking to cross any clear boundaries that have been made or have mine crossed. It’s tough for me to hold others to some I have made, but I have gotten better. I can say NO and mean it. Boundaries are meant to mark the limits of an area, to keep us safe, to enable us to play by the same rules.

But there are times you don’t get the notice you deserve if you walk the line all the time. Being a cancer patient is no time to walk the line. Cancer patients must dare to cross it. We must make a fuss because it’s our health that is on the line. Cross it, blur it, erase it, and boldly step into territory where you ask for what you need. New limits may need to be marked and a new set of rules written. These are a few of the times when I think it’s appropriate to advocate for yourself and dare to cross the line:

Cross the line when someone tries to make you feel “less than” because you have cancer, or that you’ve done something wrong because of it, or that if you just did this or that it would go away, or that you aren’t thinking clearly, or that you just aren’t good enough. None of these things are true. There are many pesky questions. These comments are a reflection of the person giving them. Just because I’m thinking about something differently doesn’t mean I’m not thinking about it clearly. It’s insulting to infer my mind is affected because I’m making decisions that don’t jive with decisions someone else would like me to make. I won’t be gaslighted. I believe some comments that fall into this category are made in an attempt to feign that the person speaking them cares or to somehow make themselves look good. MAYBE they are sincerely trying to be helpful, but I don’t get it. You can’t lift yourself up by putting someone else down. Call these folks out while you’re at it. Possible responses may include:

  • Why are you asking?
  • Where did you hear that?
  • That’s not true. (I’m not interested in debating it.)
  • I disagree.
  • Let me answer your question as it pertains to me.
  • I choose not to discuss my health.
  • Choose more of an impolite response of your own choosing.

Cross the line when you feel your treatment plan may not be giving you its best. Patients never fail treatments. Treatments fail them. It’s more than okay to ask questions. Secondary cancer does not equate to substandard or second-rate care. We are not any less deserving than early-stage patients. Treatments need to be given in the spirit of the best possible outcomes as they are for everyone else. Sadness, pain, and suffering are all real feelings that don’t discriminate based on stage or prognosis. We should not have to ask for compassionate care or if something more effective may be available, but if these things aren’t there, cross the line. Keep asking if new treatments are available. You might not know if you don’t ask. Doctors may not know you’re interested in other options if you don’t speak up. Doctors may need nudging. Lots of nudging.

Cross the line if you do or don’t want to do something. This could be socially or medically, especially if you have questions about plans directly involving you. Remember it’s okay to change your mind. Everyone can change their mind and it doesn’t mean things have taken a turn for the worse. Everyone’s interests change and evolve over time. You can have energy one moment and none the next. You have a right to talk more about your treatment if concerns and questions have cropped up after agreeing to or starting something new. You are not being difficult. You are being an informed and empowered patient, a good patient in my opinion.

Cross the line when someone talks about someone who has died from cancer and then tacks on in a hushed voice that he or she was Stage IV. I mean no disrespect – but withstanding complications of surgeries or infections – of course they were Stage IV. It isn’t exactly a newsflash. I know I’m sensitive to those words. It always strikes me as somewhat insensitive and unkind to whoever died. Why does it need to a qualified by a stage label? Someone still died. Yes, life changes with a metastatic cancer diagnosis. I feel the time has passed, long passed, for people to whisper the words “Stage IV” after someone’s name. I’d feel better if they expressed more anger and outrage, asking instead WHY or HOW in this day and age hasn’t more research been directed to lower the number of deaths from metastatic breast cancer. THE NUMBER OF DEATHS HAS NOT GONE DOWN SINCE 1995!! I haven’t figured out a way to effectively address this growing annoyance I have with the whispers. Perhaps my first step is to find out why it matters to them to include the information of a Stage IV label with a lowered voice before I go on the defensive. It’s possible I’m misinterpreting their intent based upon the lens from which I hear it. I could then go on to explain how I’m living strong with a Stage V mindset.

I appreciate that people care about me. Most of the people in my life are not intrusive. Those folks get the boot. I have reached a point though that when I encounter someone who is either speaking about me or for me by way of assumptions or falsehoods that I won’t let it pass and be quiet. Perceptions about secondary cancer must keep changing. I felt such a wave of relief and support from a friend I had lunch with a month ago who listened with empathy as I shared how I felt about comments I heard about those with Stage IV. She said she knew LOTS of people who were living years past the five-year survival mark. She should know people like me because she’s a director of development with ties to events and donors at the hospital where I receive treatment. I know there are more people like me who are living by example and changing the perceptions, definitions, and conversations around metastatic cancer.

I am done walking the line.

Support and Friendship

I love cards. I love making cards, sending cards, and getting cards. In the age of texts, emails, and communication through social media, receiving a bona fide card in the mail is rare. A few friends and I send cards to each other regularly. Mind you this officially makes us old school (but not old). Maybe a special occasion is being marked. Quite often sending the card is what makes the occasion special. We just do it. It’s one way we celebrate our friendship and show we are there for one another.

Emily sends me cards often. We met through fate as roommates our freshman year in college. We bonded over many things, but I can’t imagine having the relationship I have with her with any of the other young women who were randomly thrown together to share a room the size of an oversized closet. I am so grateful she is still one of my closest friends today. The last card she sent me was on my survivorversary to mark seven years since my diagnosis of metastatic cancer. Somehow she always finds the perfect card. She writes words heavy in meaning and hope.

The most recent card she sent me had a photo of a robin featured on the front that splashed about in a birdbath even though it was caught in the rain. The caption on the front even referenced the bird always managed to “find a way.” The words jumped out at me since that is a personal mantra of mine as well as words of inspiration for the title of my blog. The message on the inside of the card concluded with the thought that the robin kept singing through the rain.

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Card created by Cardthartic.

Emily’s personal words were supportive and encouraging. She connected the theme in the card by writing she was proud of my “strength and song through the past seven years of rain.” I’ve tried. I’ve been the robin. I’ve walked through a lot of rain. I’ve been the rain, too. I’ve also warmed myself in long periods of sunshine.

I received the card on my actual survivorversary. It coincided with the day I saw my first robins returning from winter. Symbolism is rarely lost on me. I look for signs. There is a lengthy list of positive qualities that robins possess in the world of symbolism, too many to elaborate on here. For the sake of brevity, robins symbolize renewal and rebirth since they are a spring bird. I’ve read that their beautiful song will bring joy and happiness to a person’s life. I am ready for it. I love that more robins than I could count settled all over my yard on a day that already held significance for me. More strength and song.

Strength and song as a combined force brings beauty and softness to strength. It mixes power and muscle to song. I close my eyes and feel hope when I repeat the words over and over in my mind. Strength and song, strength and song, strength and song. Strength as hope. Song as hope. Both lift me up. They make a good team.

Kristin is another dear friend and sender of some of my favorite cards. She is not just a source of hope for me but also a source of strength and song. I can always be myself and share what’s on my mind whether I am a robin singing or drenched and cold from the rain. We value the same things like gratitude, kindness, helping others, good health, equality, and the environment. We’ve shown up for one another over years of friendship.

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A Green-Inspired card

The support she offers me through a few sentences in cards is immeasurable. She writes of joy and comfort, support and positivity, tears and fears, gratitude, friendship, and humor. Surrounding myself with like-minded individuals is important not just from a perspective of maintaining a healthy and hopeful mindset, but in achieving and sustaining happiness. I am so fortunate to have made a lifelong friend from adolescence and still have such a strong friendship almost forty years later.

I recently received a letter from the University of Wisconsin Foundation that both Emily and Kristin made tribute gifts in my name to the Stage IV Needs More Fund. Both of these friends know of one another through me, but they are not close geographically and do not communicate to my knowledge. Yet, they made a charitable donation at the same time to honor my personal milestone as a survivor. Kristin told me I made good points through my blog that more research is needed for later stage cancers. Their gifts are more than tribute gifts for a cause I often promote. It is a gift that shows two incredibly strong friendships of strength and song. Powerful forces work in mysterious ways.

Emily informed me that Rob and Mary Gooze, who established and oversee the Stage IV Needs More Fund through their work and advocacy, included a hand written thank you as part of their acknowledgement for her gift. A hand written note fits well into the theme for this post. Rob and Mary are incredibly warm people. They took the time to show they were truly grateful for a donation. Cards and hand written notes make a difference.

No one goes out to make a friend with the reasoning that it’s a healthy choice, however, there is a connection between friendships and health. Time spent with the right friends raises levels of happiness and lowers stress. We have a stronger sense of purpose and belonging with friends. Friends are there to provide support through tough times. Friends stand by one another. Studies show that having many friends as you age may even help you live longer. Friendships are pretty powerful forces themselves.

My life is wonderful in part because I have amazing friends.

I almost titled this post Strength and Song instead of Support and Friendship. In the end, I decided to keep it simple and to the point. A synonymous relationship definitely exists in equating the words strength and support. Song and friendship may be a bit more of a stretch, but they have similarities, too. The best friendships keep the beat, develop variations of the same melody, and harmonize with perfect tones. I will always think the words strength and song carry new meanings from this point forward.

Friendship is a priceless gift. My friends are family. Unfortunately, there have been friends who drifted away when I received my cancer diagnosis. They don’t have the strength or song that I need. They don’t know how to show up for me or they don’t want to show up for me. Other people (note the avoidance of the word friends) have shown up in toxic ways and I have chosen to distance myself from them. I have changed, too. I’ve made mistakes, but hope I’m a better friend today than I’ve been in the past. Positivity, support, and hope are qualities I’ve always valued in my friends. I choose to surround myself with friends who have these. My closest friends sing through the rain just like I do. We share one another’s victories and tough times.

Strong friendships that last though the years are built through support, trust, and empathy. Laughing is a must. Tears are not shunned. Having fun and common interests helps. Interests that change and evolve over time may contribute to some friendships that lose their intensity. My good friends and I have always found a way to support one another and stay connected even as our lives changed over the years. We all need friends to celebrate with, cry with, and confide in, no matter what is happening in our lives. I want to stay close to friends who feel like warm sunshine on those rainy days. My friendships that continue to grow are nurtured through connection. Connection makes room for trust, empathy, and hope through strength and song.

Thank you, all my friends, for being my strength and song.

Consider responding:

  • How are friendships important in your life?
  • Do you still send cards in the mail? What is behind your decision?
  • What does strength and song mean to you?

Empathy and Cancer

Empathy: the ability to understand and share feelings with another.

I recently read a blog written by an older woman who had a cancer scare that she had to deal with on her own. Her husband had passed away from cancer and she had had enough of it in her life. Her feelings are understandable. Two mammograms directed her to an ultrasound. The ultrasound triggered a biopsy. Her timeline read very much like mine did. One test after another was given with heightened urgency. Everything was fast tracked for this woman because the doctors were worried about the outcome of tests. She didn’t know how she would do cancer alone. Thankfully, this woman did not have breast cancer. Of course, I am glad it turned out this way for her.

She said her experience gave her empathy for people who are alone.

Hello?

I’m sure this fellow writer is a lovely woman. Supporting someone through illness is hard. Losing him/her to that illness is excruciating. I do not diminish her pain because I know it’s real. I can empathize with her because I have lost people in my life. Cancer takes too much.

I am confused though why empathy needs to be directed toward people who are alone. Is aloneness somehow lesser than togetherness? Do my experiences when I spend time with friends, family, or a group of people give me empathy for people with partners? They do not. I may at times feel a little thankful to be back home and away from some of the stimulation and unwelcomed opinions, but I do not have empathy for people in a relationship. It sounds absurd when the shoe is on the other foot.

Somehow the comment rubbed me the wrong way. It seemed more bothersome to me that she felt empathy for people who are alone than for people who have cancer. I just kept scratching my head. It felt like pity or that someone was feeling sorry for me. I don’t want someone’s sorrow. Her remarks made me feel like she was saying, “Thank goodness I didn’t have cancer and the double whammy of being by myself!” This is more of an inner reflection than what was likely intended. I guess being on my own is a bit of a touchy subject for me, mainly of how I feel society perceives it as something less. I feel like I’m regularly defending my status. Sometimes I feel forgotten. Having cancer and being on my own really isn’t so hard. For one thing, I am reliant on myself and can organize appointments, etc. in a way that works best for me. I don’t have to check with others when I need to change my plans. I know how I feel and I don’t need to try to convince or explain those feelings to someone else. Sometimes it’s hard. Sometimes I wish I had a little more help and didn’t have to figure everything out. And I do have help. I have plenty of support. I ask for what I need. I feel connected to so many and have nurtured meaningful relationships. Technically, yes, I am doing cancer on my own, but I’m also not. It’s complicated.

“Empathy is simply listening, holding space, withholding judgment, emotionally connecting and communicating that incredibly healing message of ‘You’re not alone.’” ~ Brené Brown

Enjoy a short clip from YouTube where Brené Brown explains more about empathy.

I am not sure I’ve done all those things in my reaction to what I read. This post itself has been difficult for me to write. I have felt angry and questioned those feelings. However, it is completely okay, in fact it is fine, more than fine, for me to feel anger. I feel misrepresented. I feel there are indirect implications that are at my expense while someone else is expressing gratitude. Gratitude is not gratitude if someone (or another group) is put down in order for another individual to feel grateful. Nor is it empathy.

Empathy means a lot to a person whether they have someone at their side or they are on their own. Empathy is a universal yearning we all need and we all have the capacity to give. You are putting yourself in someone else’s shoes. It still isn’t quite the same because at the end of the day you put your own shoes back on. Still . . . there are moments when you almost get it. The important part is that you try to get it. I have beloved friends who try to get it.

One of my goals with this blog is to change perspectives on cancer, particularly advanced stage cancer. When I read something that feels a little, “Oh, that poor person has cancer and is alone,” I don’t like anything in that sentence because that feeling of pity permeates whatever sentiment is trying to be conveyed.

It doesn’t feel good.

What feels good is being welcomed to a group. I’d rather hear a compliment about something amazing I accomplished instead of a question on whether I went with anyone while achieving it. It feels good to be appreciated for my other qualities. It feels good to be included in things. If I’m unable to do something, then I may need to pass, but I appreciate being included. I like it when people remember things about me and respect my thoughts and opinions. I like it a lot when I’m not constantly asked about my health and truly treated like one of the gang. A small bit of thoughtfulness goes a long ways. It is how I believe we all can treat one another respectfully and compassionately.

Empathy in action is a lifestyle choice.

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Taken at the UW-Arboretum in Madison, WI.

It’s possible I’m confusing empathy with sympathy, but I don’t think I am. In fact, I think some other people are. I certainly don’t want anyone’s sympathy or sorrow. It belittles and demeans if directed at me because I’m living with cancer. I want an even playing field. Don’t give me something or take something from me because of my health. Don’t give me something or take something from me because I’m single. I didn’t ask for your sorrow or pity. I’ve asked for your encouragement, support, and friendship. These are the things I offer.

There is something else you can give me: caramel. If someone were to offer me a caramel, I would not say no. Really good caramels are an entirely different story. It just might be an edible form of empathy.

Empathy is feeling as sad for a friend as if the event were happening to you. It’s understanding your friend is in a lot of emotional or physical pain. Empathy is understanding a perspective that’s the polar opposite of yours. Parents and teachers demonstrate empathy every time they know that something that isn’t a big deal at all really is a huge deal to a child. You show empathy to me when you understand that I may cancel plans, not feel one hundred percent, and don’t ask me a laundry list of questions. It means a lot to me when you share something hard in your life rather than me always explaining my latest hurdle that I try to embellish with a little humor thrown in for good measure.

Empathy is not making comments along the lines of “It’s too bad you had to get cancer.” Yeah, I just don’t know what I was thinking when I was in the cancer store. It isn’t empathetic to tell someone what he/she feels. Neither is telling someone what he/she needs to do to fix what is deemed not right (health, job, loss, etc.). Empathy is not putting someone down or saying things could be worse or that he/she should feel grateful. The words “at least” aren’t used at all. Please don’t tell me to live life to the fullest because tomorrow I could get hit by a bus. What many people don’t understand is that I’m running from that stupid bus every day. These things seem obvious to me, but I’ve heard them all. Perhaps the intention isn’t to show empathy, but to show something far less kind. I can’t figure it out.

And empathy definitely is not knowing what it might be like to have cancer and be alone because you had a scare and everything turned out just fine. You put your own shoes back on and walked on.

Empathy is something we all need and we all have the ability to give. At best, we understand what it’s like to be scared, perhaps terrified about our health and our future. We understand all the “what ifs” that run wild in our thoughts. We understand that disease can be a very lonely place to live. We can relate to one another that our upsetting news, event, or circumstance may be completely different from another person’s struggle, but that they are the same in that they are unsettling, frightening, and possibly very lonely feelings. We understand people are doing the best they can with what they have. Empathy connects us to one another. Through empathy we can share with and support one another. IMG_1836

I can empathize with those feelings.

I am not alone.

You are not alone either.

Consider replying:

  1. Where have you seen empathy alive and well in your life?
  2. How do you best handle situations when someone is not empathetic?