Still in Treatment Bells

Yes, the title is correct. I have read a number of End of Treatment Bell posts over the years. This one has a twist.

Today’s post may be unpopular and upset women and men dealing with metastatic cancer. I am sorry if my words cause distress. There is enough of that in your life and mine. I welcome respectful comments and will respond respectfully in turn.

For those readers who aren’t familiar with an end of treatment bell, it is a bell rung by patients at the end of a final treatment to celebrate the occasion.

If you are a new reader, it’s important to know I’ve had metastatic breast cancer from the start of treatment back in 2012.

Prepare for Controversial View #1.

There was a time when I actively advocated for bringing one of these bells to my treatment center. I supported it for others even though I had metastatic cancer. Even if I would never ring it, I wanted others to have the opportunity. I truly didn’t think hearing it would bother me. I thought I would equate the sound as hope for someone’s future. My intentions were good. I didn’t understand the arguments I read from others because my perspective was different. My plan was to set benchmarks in time and ring it purposefully at those points in time.

I didn’t understand.

I have read. I have reflected. I have changed my opinion. I am deeply sorry I haven’t understood and that it’s taken me longer to get where so many are in their beliefs. I was wrong. I am grateful that the idea for a bell was rejected.

I was told no for the exact reasons so many others have mentioned: Some patients would never get to ring it. It would not be sensitive to their needs.

I have read other reasons on social media from those who do have to hear the clanging of end of treatment bells where they receive treatments and these brief accounts have been gut-wrenching to read. There is trauma in the sound that is beyond painful and harsh. One description compared it to being kicked in the teeth. My perspective has changed. Hearing these bells now would make me feel discouraged, depressed, and envious. One person’s celebration would be my despair. I would not feel good about these feelings or thoughts.

I believe the initial intentions of these bells were good, but also that the decisions were not well thought through and inclusive of all patients. The repercussions have not been positive for everyone. I haven’t read anything about end of treatment bells being removed from treatment areas that have them.

Prepare for Controversial View #2.

Ring the bell.

Ring the bell every chance you get. Ring it when you arrive at your office visit appointment, after your office visit, when you enter the treatment area, and when you finish treatment.  Ring it SEVERAL TIMES DURING ONE VISIT. Ring it because it wasn’t intended for us. Ring it because we weren’t valued in the decision.

My point is if they can’t see us (those with metastatic cancer often are the unseen patients in news or fundraiser campaigns), then we are going to be heard every opportunity we have.

Change the meaning of the bell. It would either become meaningless because we are removing its purpose . . . or something else could happen. Is it completely crazy to think over time a shift could occur where the only people ringing the bell would be stage IV metastatic patients? Could ringing it become a reminder that 30% of patients will become metastatic if more research isn’t dedicated to more effective treatments, medications, and a cure for us? Could it be recognition that 10% are already metastatic at the time of diagnosis?

There are die-ins. Protests. There are many forms of advocating for change. A Still in Treatment Bell could be one more way to use our voice.

Does changing the word end to still make you feel differently or pretty much the same?

Ringing the bell would likely not be welcomed. Good. Let more research happen and then maybe no one has to hear it ring. I really don’t want to ring it but I will ring it with a vengeance if one ever appears where I receive treatment.

I imagine I’d shout, “MORE FOR STAGE IV” as I ring the bell. No rhyming poem. No plaque. No explanation. Just a clear and emphatic shout for what is desperately needed.

I imagine I might be told:

“Please don’t ring the bell. It’s for end of treatment survivors.”

“That bell is not for you.”

“The other patients feel uncomfortable with the constant ringing.”

“You are ruining it for other patients.”

 

How I’d hope to respectfully respond:

“Wouldn’t it be something if no one had to ring the bell? More research is needed for all of us. MORE FOR STAGE IV.”

 

Cancer has changed me. There are times I feel like I’m going nuts. Maybe I need to embrace it and live more of the way I feel.

What does that mean?

It means I should bring my own damn bell to ring at treatments. Maybe I will.

 

Consider responding:

  • How have conversations you’ve had been received in places where bells are present?
  • What are your thoughts on still in treatment cymbals?

Reclaiming October

Breast Cancer Awareness Month is almost here. An inundation of pink will accompany promises that a cure is just around the corner and that change is imminent. Everywhere you go, there will likely be some campaign to raise awareness with the belief that a contribution to the cause will go to research that will find a cure. It all will be so happy and upbeat because pink is pretty. Some will reminisce and post photos of life going through treatment and compare before and after photos. The media will highlight survivor stories.

Fine.

Really.

I am not trying to take away from someone else’s survival. There is room for everyone. I am trying to shift the focus and include a greater focus on metastatic breast cancer.

I know I am beautiful but I don’t post before and after photos because I still wear my wig. There will never be after photos for me because I will always be in treatment. I do hope to ditch the wig. I don’t think there is a lot that’s pretty about what I go through month-to-month, or even week-to-week. October is a tough month. It’s hard like a brick wall.

But I’m a wrecking ball.

Here I come.

I am gearing up for one hell of an October.

I’m taking the month back and making it about metastatic breast cancer. It’s a golden opportunity to put MBC in the spotlight.

I am renaming it Metastatic Breast Cancer Action Month.

#ActionMBC

Throughout October (and beyond), I will be taking action directed toward change. I will tweet, post, blog, and talk about the facts of MBC in attempts to create visibility and push for more attention, funds, and research to be directed toward this group of the breast cancer population. I’ll write letters and talk to anyone who will listen.

It’s vital I reach people who know little about this world. Many do think awareness is the way to end cancer. I disagree. Giving people accurate information about metastatic breast cancer is part of recruiting support for needed change. Facts on MBC will become tweets and posts. A few unsolicited opinions may be inserted. I’ll also display them on public bulletin boards and maybe even plaster them on bathroom stall doors to provide some meaningful literature in all of the finest restrooms I frequent. Yes, I did just write that. A person might as well spend a couple of minutes learning while occupied with bathroom business.

It amazes me how people don’t know some of the things I thought they would. They may even work in the healthcare industry and still be somewhat uninformed about the effects of metastatic breast cancer. They may be survivors and completely oblivious about the chances of recurrence. I don’t understand everything there is to understand about cancer. It’s my opinion the general public doesn’t have accurate information on secondary cancer and I would like to reach this audience.

Preaching to the choir doesn’t do much. Providing information to people who don’t even sing has the potential for change.

I want to provide information this month that:

  • Metastatic breast cancer is with those of us who have it for the rest of our lives. We will still have it after October.
  • No one has done anything to get cancer. It affects people of all ages, races, sizes, education levels, languages, and incomes.
  • People who have gone five years being free from cancer after treatment ends can still have a recurrence and develop metastatic cancer.
  • Metastatic cancer kills people.
  • 10% of patients already are Stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • It’s projected that 116 people per day will die from metastatic breast cancer in the U.S. in 2019. Five of those who die each day will be men.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits.
  • People who have any type of cancer, or have had cancer, or are labeled as having a pre-existing condition, deserve health coverage from insurance companies. Affordable health insurance is a basic human right.
  • Awareness and prevention programs have done nothing to lower the number of deaths from MBC.
  • We need more research, more treatment options, and more effective treatments for metastatic breast cancer.

We need more attention from others outside of the metastatic breast cancer community. I often feel like we are shouting from the rooftops from only our own village. It takes more than a village. It’s going to take all the villages.

I regularly hear that we need more research devoted to metastatic breast cancer. It’s often my own voice I hear saying it. I’m not just talking the talk, but now I’m walking the walk. A few months back I created a fundraiser through the UW Carbone Cancer Center where I receive treatment.

Click here to access my fundraising page. My plan is to devote a separate post about my goals for this at the end of the month. I encourage you to make a small donation and feel nifty with me. You’ll see what I mean after viewing my page. Don’t delay. Don’t put it on your “To Do” list. Once it’s done, it is a proud part of your “Ta-Dah” list. I am grateful for your support.

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Click here to watch a video about UW Carbone.

I am committed to raising money for research.

I am committed to making my voice heard.

I am committed to doing more.

I have plans to speak at several places in the community. My story will be displayed in a couple of businesses in October. I’m busy networking to keep the momentum going after October and for the better part of 2020. All this takes me quite firmly out of my comfort zone. My health often causes me discomfort anyway, so I might as well find ways to show it I am still the boss of me. I can wrestle and rumble with it and make it uncomfortable with me.

 

Please consider responding:

  • Please chime in with other MBC needs that I haven’t mentioned.
  • How can you use your platform and advocate for change this month?

Kayaking as Peace and Healing

Sharing your story is one way to heal. Shared stories create healing both for the storyteller and reader. I wrote about my first kayaking experience in 2013 after I returned home from spending time at a breast cancer recovery retreat on Madeline Island. Madeline Island is one of the Apostle Islands in Lake Superior.

It was a cold and rainy day in July that many would want to forget. It became a story I wanted to share because of the healing properties of being on the water. The experience taught me I could do anything and be stronger because of the experience.

I was delighted when I discovered the piece had been passed on to a regional magazine and published. Well, mostly delighted. I would have appreciated it even more had the intermediary party involved told me it was in print.

At any rate, it was shared, and it may have contributed in some small way to someone else’s healing that read it. I hope by sharing this personal narrative again that it may be helpful to someone.

Kayaking: A Metaphor for Peace and Healing

Breast cancer survivors don’t understand the word no. We’ve heard it too many times. The cold gray sky said to stay inside. A steady mist fell. It definitely was not the warm, sunny, end of July day everyone expected while at our breast cancer recovery retreat. It was, however, our kayaking day on Lake Superior. The weather would not stop us – instead it would make us stronger. Everyone agreed to go. Each of us had faced, or still faced in my case, cancer and screamed NO at it with all our might. A little rain would not interfere with our plans.

Kayaking was a structured activity and part of our learning at the retreat. To be part of nature. To do something physical. To do something spiritual. To listen to the water and to listen to ourselves. Kayaking encompassed all these and more.

Lake Superior is a place of story and spirit, along with the islands that make up the Apostle Islands. Our guide took us to a beautiful inlet on Madeline Island that eventually led out to the much larger lake. The tranquility was beautiful even on a rainy cold day. The inlet protected us from the strong wind and rocking waves. Each of us was about to write more of our own personal cancer story upon the Lake Superior water.

A steady stillness surrounds you when you’re in your kayak and on the water. The oar slices through the water silently and your kayak soundlessly skims across the top. You are submerged but not submerged – on the surface but not on the surface. A kayak puts you in the moment more than any other activity I can imagine.

There is a peaceful oneness with the water. The rhythm of paddling along with the inhaling and exhaling of all that fresh air creates a meditative state.

Kayaking changes perspective. You see everything from the middle, not from the shore. You are almost eye level with the water. You have control over where your kayak ventures to and at what pace. There is empowerment in a kayak.

Kayaking heals. Cancer, surgeries, treatments, and medications take a toll on bodies and spirits. Fear creeps in. It settles in and eats away at your hope. Yet, water has its own purification and renewal powers. Water replaces fear with hope and life.

Water trickled down from the oar I held and onto my legs. The mist coming down, sideways, from every direction cleansed spirits. Kayaking connected the healing aspects of physical, emotional, and spiritual together. Every stroke made me feel more powerful and farther away from cancer.

When there is a storm, kayakers are supposed to raft up . . . to come together and hold on to the ropes of all the kayaks and ride out the storm. You don’t try to paddle anywhere. You just stay together, all in a tight bunch. The point is to make the group look bigger for large boats to see you and to rescue you.

However, there’s another point, too. In life’s struggles, don’t you want to raft up so you can help one another through the storms? You do. The concrete becomes another part of the metaphor.

After about an hour, our group came together to assess our progress and make decisions. One kayak was filling up with water and in constant need of the hand pump. The mist had changed into rain. You could see by the wind moving it slantways. We headed back in silence to reflect on our experience.

Kayaking proved to me once again I could conquer my fears. Not just conquer, but excel, in this new experience. Every inch of me was soaked, yet I felt fantastic! I was stronger both inside and out.

Once out of the water I started to shiver. Yet, I knew this was not the toughest part of my retreat. The toughest part for me was earlier that morning as I took an emotional risk when I shared scary parts of my cancer story with my fellow retreatants. Emotional risks are scary.

I will paddle on in the warmth and sunshine.

I may paddle again in the cold and rain.

I can do anything.

And I will.

 

 

 

 

 

 

Committing to the Hat

One thing that drives me crazy lately is wearing a hat. It is winter and hat wearing weather. On the pro side, it keeps me toasty warm. I am a fan of toasty warm. On the con side, taking off the hat usually shifts my wig. It has to be done carefully. One hand has to glide up past my forehead and underneath said hat. It rests between the hat and my hair, anchoring it in place. It doesn’t always work. It has become one of many extra processes in my life. It makes me feel self-conscious. I am not a fan of self-conscious.

When I put on a hat, I have to really commit to the hat. You see, I may have it on for a while. Even if I get hot, I don’t feel like I can easily take it off without possibly drawing attention to myself. The reality is probably no one is looking at me. But there’s still the self-conscious thing.

Committing to the hat is just one more thing I have to do. It’s one of the behind the scene consequences of living with cancer. Others include my independent pharmacy of mostly supplements that I ingest several times a day that I believe help me, neupogen injections every weekend to boost white cell counts, feeling anxious about many social situations, not knowing how I’ll feel when I wake up, and juggling an ever-changing schedule of appointments and such.

Committing in general has been up in the air over the past several years. Everything is more uncertain. Maybe that’s why the hat is harder to wear.

Ironically, I need to commit to uncertainty.

A hat seems like such a small thing. But it’s a small thing over which I would rather exercise some control. Control is a big thing for a lot of people. Some try to control other people through a position where they do not know how to be a successful leader. We can’t control how others respond. Ineffective leaders are met with lack of respect and people who undermine them in order to do what is needed. People who seek to manipulate in relationships are still alone inside. Others try to control themselves through self-destructive acts. Yes, we are responsible for our choices. A decision to inflict hurt on yourself is not within your control or a choice. It is the polar opposite of self-love. I have come across a few people in my life who have struggled with self-love. I can’t control them. I can show up for them with love, friendship, and support.

The hat is also about control– my need for control over something where I don’t have it. I’ve really not had much control since diagnosis.

Anyone have a hat for that?

Uncertainty and lack of control go together like chocolate and peanut butter.

Chocolate and peanut butter are better.

I’d love to pal around in a vintage hat of the 1920s, go back in time, and meet my grandma when she was younger. It would have to be a special time traveling hat. We’d be friends. I imagine meeting at what was known back in the day as Stevens Point Normal School where she went for teaching certification. I’d love to see her passion of one of our shared interests and how her youth and experiences shaped the years when I knew her.

I don’t care for the cancer hats, the kinds that are knitted or ordered through cancer magazines and online. This includes bandanas and scarves. They all are just so obvious. When I wore those years ago, I was fine with them, both physically and emotionally comfortable. It was too bad if others had a problem seeing me that way. Now, they are more of a reminder of loss. I am very aware of my losses and don’t need visual reminders. I am not some sort of public service announcement either. The cancer hat I wear is invisible, but it is part of that uncertainty and lack of control.

In fact, I still don’t know how to refer to myself. You think I would after nearly seven years. Am I a survivor? A thriver? The survivor label is used for someone who has been treated for cancer and thought to be cancer free. The thriver label is used to distinguish those who will never be thought of as survivors . . . yet. I’m not sure where this began. Perhaps it was well-intentioned. Perhaps it was designed out of need to give some of that sought after control back to people’s lives. However, there is even some discomfort within the cancer community itself with the term. As a result of that discomfort, sometimes thrivers are not included in discussions or are isolated into their own group because there is worry they will scare others, not have any similar needs in common with survivors, and be of no help. Abigail Johnston explains it better in her blog post Early Stagers vs. Metastatic Patients. Take a moment to read it!

Right now, I think I can wear both those hats. I’m surviving and thriving. Maybe I’m a driver (for change), a striver (for health), a troublemaking conniver (just because). I’m definitely feeling a Lin-Manuel vibe. At the same time, I really don’t like being labeled. Just let me be me.

And there it is . . . the reason I don’t know how to refer to myself.

Just let me be me.

Don’t call me anything. What bothers me is others who want to tell me what I am. Some are very firm about it. We’re all different. The survivor hat may not work for one person, but work really well for someone else.

If I could choose a hat, I would choose a sun hat. I can pull off a wide-brimmed sun hat and wear it well. I like that because with proper sunshades I can people watch (stare at people) and no one knows that’s what I’m doing (until now). Keeping cool in the hot sun is a priority, too. My fair complexion freckles and I burn easily. I must do what I can to remain youthful looking. Medications also require avoiding time in direct sun.

My favorite hat is a cream wool winter hat I used to wear with the brim flipped up. I guess it’s called a bucket hat (think Paddington Bear). I wore it during a golden time when all was well in my life. It looked cute on me. I had no problems committing to that hat. It was functional, attractive, and easy to wear. Stylistically, it was very simple and matched with many of my coats. My life was also much simpler when I wore it, but I’m sure I didn’t realize it because I didn’t know what I know now.

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Are there any positives to committing to the hat?

People who have let go of control seem to be happier. You can love and accept things as they are without a need to fix something. Surrendering control may present opportunities to relax. You may find you get what you need. Controlling less and doing less may give you more. Committing to the hat, committing to uncertainty, can help a person commit to more freedom. Spontaneity can take pressure off from a lot of choices. Do you want to know something? When I started this paragraph, I really didn’t think I was going to find a way to reframe this hat thing in a positive way. Anything is possible.

Committing to freedom, to relaxing, to ultimately receiving more of what I need all sound a lot better than wearing uncertainty day after day after day.

I know for everyone else wearing a hat doesn’t cause a second thought. It shouldn’t. Well, maybe it should cause pause for some folks because there are people who adorn some very questionable hat choices in my book. Remember though, it isn’t really about the hat. One last thing the hat is about is recognizing that there are things people do that aren’t visible on the surface. Everyone has these. Everyone has uncertainty. Everyone just wants to have the comfort of a hat that fits really well. My favorite cream hat calls.