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.

 

Stage V and Kardashian Power

IMG_1077 close up copyThe Kardashian family is highly successful. Whether you approve or disapprove of their choices is not the point in today’s post. What is relevant is how they have been able to achieve the level of success they have experienced and harnessing it to change perceptions about cancer.

There are many causes for their success. The Kardashian brand is highly visible in the public eye. They have strong financial backing. The family’s influence is far-reaching, almost anything Kardashian turns into gold, and each family member knows how to work the Kardashian brand through the use of social media. Each family member has celebrity power.

My brand is Stage V – a cancer stage focused on unrelenting wellness.

I do not accept that Stage IV is the end of the line. Therefore, I’ve created a space where I live in alignment with my own expectations, ignoring what I’ve heard in terms of medical statistics. Stage V is a way to think outside the medical box, shattering it, and creates a mindset toward surviving and thriving. This brand, product, however it would be labeled in the business world if it were to be thought of as something to sell, needs to become more visible to the masses. Using social media is a good way to increase visibility to the public eye.

I do not have the same type of assets like those possessed by the Kardashians, nor am I a celebrity. I am okay with this because I am introverted and treasure my privacy. Yet, I understand that in order for what I am branding, individuals with a Stage IV cancer diagnosis need to re-envision their life as a Stage V lifestyle where living in a world of wellness is the focus. Stage V needs to be branded like a Kardashian perfume. It needs to have Kim-Kanye visibility on social media, and it needs to be talked about and recognized as a real and viable concept. Survivors who ooze Stage V qualities are the best recognition to give it credibility and success. Exposure and increased visibility will mean Stage V becomes more than a powerful brand; Stage V becomes a way of living as intended.

I have heard two news stories about Stage IV cancer over summer that used the back-to-back sentences: “She has Stage IV breast cancer. She’s dying.” It was maddening because the story was about a woman swimming Madison lakes to raise awareness about metastatic breast cancer. She looked every bit as strong and as alive as a person could be. The part about her dying just didn’t seem accurate, nor did I think it was necessary to the story. I contacted the news station and found out this was how the woman featured described herself. I disagree with her description, but I wholeheartedly support and applaud her efforts. I choose to see her as Stage V.

How can you talk about Stage V in ways that promote its visibility positively?

Education is the first step in bringing about change. More survivors are speaking up and being such educators. If you are a reader with cancer and you are ready to make a difference by altering perceptions one by one, use the following as scripts to guide conversations in shifting others to a Stage V mindset.

  • Explain what Stage V means. Keep it simple but be very clear that you are living in a space of wellness. You have moved beyond the medical classification of your health and are living fully. You don’t accept discussing your health in unhealthy or disparaging terms.
  • Possible script – “Thanks for caring. I am living each day in a mindset of wellness. Yes, things have changed, but I don’t see myself as sick.”
  • Possible script – “I don’t feel sick. I feel well. I am taking such good care of myself that I will be even healthier in the future.”
  • Live and lead by example. Normal is as normal does. Wellness is as wellness does.
  • If others cannot accept your mindset as being one of unrelenting wellness, then politely tell them they can step aside and get out of your way. You do not deserve to be categorized and put in a box. If you are not going to block your own path, others will not be allowed to either.

What would Kim Kardashian do? I don’t think she’d listen to criticism or let naysayers stand in her way. I believe she would speak her mind and get on with what she needed to do. Appropriate disclaimer inserted here: Of course, I don’t know Kim and have no idea what she would really do. Yet, the idea that you create and then live something better if you aren’t happy with the choices offered to you is exactly the same whether one thinks about Kardashian Power or Stage V Power. Again, I don’t really know what Kim would or would not do. The bigger question . . . What will you do?