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?

The New Abnormal

Those diagnosed with any form of cancer immediately are thrust into a world known as “the new normal.”

It is anything but normal.

“The new abnormal” would be a better name.

Normal will never happen again for me. My reality of attempting some form of normal for the last seven years doesn’t mean life is normal for me. It means I’ve learned how to exist in crazy. Maybe I should refer to present-day life as my old crazy because I’ve existed this way for so long. The new normal phrase has always rubbed me the wrong way because normal was ripped away and replaced with nothing of the sort.

Is calling what I do the new normal supposed to somehow make me feel normal? It doesn’t. Instead, it makes me feel like I can’t even do the new normal normally. Is it meant to make me or others feel better? It doesn’t make me feel better. I’m not sure if it makes others feel better. It potentially minimalizes what I do in the eyes of others. It invalidates my struggles in what really is abnormal because of the language that this is the norm.

The new abnormal is a topsy-turvy world of back and forth. It’s a world of opposites. I have felt wonderful and miserable.

I’ve gained and lost weight even though my level of exercise has remained about the same.

I’ve had my share of down days plagued with fatigue and others with more steroid induced energy than I know what to do with.

I’ve had no appetite and other times where I’ve eaten everything in sight.

Diarrhea. Constipation. One word sentences here are fine.

The medical world is a potpourri of repeating abnormalities. There are more one word or near one word sentences coming.

Labs. Office visits. Treatments. Side effects. Repeat.

Scans. Anxiety. Regrouping. Repeat.

I call insurance companies and billing departments far more often than is necessary. I rarely did when my life was supposedly normal.

I’ve gotten to feel at home with nausea. Ondansetron works well for me when it hits.

I’ve gotten to feel at home with many other drugs and supplements. I know what works for me and what doesn’t. I know my body well. I think I have finally broken through and convinced my team NOT to give me one particular drug used during MRIs that causes a worsening reaction. Every office visit begins with a review of my long list of medications.

How is any of that normal whether it’s the new routine or not?

In between all of this complete abnormalness are all the attempts to squeeze in any normal moments that are possible. ME time. I exercise and plan activities I enjoy that will keep me moving. Time with family and friends fill in normal moments. Football season has started. Go Badgers! Special occasions are sprinkled into my schedule when possible. There still is meaningful work that matters to me. Whereas my schedule had always been fairly rigid, I love the flexibility I now have. Being able to focus on purposeful work has been one part of my new abnormal that feels pretty close to my old normal.

The only constants are change and the need to live in the moment. Cancer has taught me lessons in change repeatedly. I am more present. It’s why I like #NotTodayCancer so well because I can be pretty definite about certain things as I go through my day.

The new normal is not the right term for how I live. Life is abnormal. Calling my life permanently abnormal is the best fit.

What even is normal?

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.

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.