Individualized Survivorship

I was half listening to a show on TV many, many months back, and whatever I was watching touched on the importance of survivorship plans for cancer patients. I shifted my focus more intently to find out how these differed from what I thought of as a treatment plan. The specific TV segment ended before it began, and it never went into enough depth to even explain what a survivorship plan was other than a detailed medical plan for continued care and survival. To me, this translated that a survivorship plan was merely an extended treatment plan.

I took to the internet and survivorship plans did seem to have a very medical tilt to them. These plans looked great in that they contained all your pertinent information about your past treatments and planning for future care in one spot. They were very similar to my health journal that I take for medical office visits. For me, a drawback is they are narrow in scope where only the medical aspects of continued health are part of the plan. They are forms.

Survivorship can’t be condensed into a form.

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At the beginning of treatment, I was given a piece of paper with blanks for me to fill in with all the particulars about diagnosis, surgeries, treatments, beginning and end dates, etc. It was a fine centralized place for information at a time when life suddenly was more overwhelming than ever, but rather limited for the long haul. It remained a good reference tool.

Some survivorship plans out there are better than others. One of the better ones I’ve found comes from the Minnesota Cancer Alliance, created by Karen Karls, a survivor from Grand Rapids, Minnesota. In addition to giving space for a historical documentation of dates and treatments, it provides great questions and things to think about for follow-up care. It looks like an awesome resource. The actual survivorship plan can be found here. Pick and choose what may work for your needs since it is lengthy.

I would add to this resource additional space or pages for any continued treatments needed if you are metastatic and have need for an ongoing list that can still be somewhat at a glance to provide an overall picture. It would have medicines, beginning/ending dates, side effects, results, and an area for why you switched or for additional notes. I use a spreadsheet to accomplish this for my needs.

I want a healing plan. In my mind, a healing plan combines the medical aspects of a survivorship plan (treatment plan) and the complementary pieces added to ongoing medical plans for complete care. A healing plan encompasses all of it. As a survivor, you are the executive in charge of connecting all the dots between your oncologist, primary care provider, naturopaths, acupuncturist, massage therapist, mental health provider, and any other therapies or services you seek for better health. This sounds like the job of a patient navigator, but the role of the patient navigator stays within an integrative health care network. He or she can put you in touch with approved services within a network. As soon as you want to seek something complementary outside of the system, you are on your own. Incidentally, they also haven’t been too keen on hearing how I think a patient navigator differs from a survivor navigator, probably because it opens up too many potential liability issues. It makes me mad the kinds of wrenches that get thrown in the way of someone’s best health.

A survivor navigator is hereby decreed a new position.

It is one of great worth for which you will receive no monetary pay. You are self-employed and get all the benefits from your new position. Maybe someday health care will see the wisdom of multiple services (even if they are outside the system) working in tandem with efficient communication and patient information sharing. Research should be doing A LOT more sharing of their discoveries and resources to find a cure. It only seems logical. What is crucial to remember as your own survivor navigator is that you must communicate important details of your healing plan to relevant parties. For example, your oncologist should know if you’re adding any new supplements to your health regiment because they may interact with treatments or other prescriptions.

They also may not. I have heard “we don’t have evidence for how these herbal supplements interact with drug x” a couple of times.

I try not to roll my eyes too loudly.

Translated, it means “there isn’t any evidence because big pharma will never sponsor such a study since it may be discovered something cheaper and more available works even better than drug x.”

I doubt there will ever be any such studies. I do not have medical training and am not making medical claims. The above are my own opinions which I openly share with my medical team. You need to do your research, have relevant conversations, and make the decision that you feel is best for you. I am not a doctor.

I do know some of the supplements I take, many of which have been suggested by my oncologist, have helped my body feel better and move more effectively.

Maybe it’s too pie in the sky to think that each patient can have a personal assistant to schedule every need the patient has and keep it all straight. Call me a dreamer. I’d love to have a person like that assigned to me, but it looks like I am that person and I’m already here doing the job. Right now it’s a seed idea that has the potential to grow into something real for others. Somehow this person has to have reach outside of a provider network to connect patients to complementary resources without taking on potential risks in so doing.

Health care is better when people work together.

In education, students with special education needs have what is known as an Individualized Education Plan, or IEP for short. Every learner has different needs. The goal is for targeted instruction to each individual student. In theory, all students have an IEP, most being informal and not legally binding like an official IEP. A student receives his/her best education when teachers work together as a team for a specific learning outcome. A healing plan is much like an IEP in that it’s individualized to the individual.

People are working together for a specific health outcome.

Think of it as a personal Individualized Health Plan, or IHP to stick with the acronym pattern.

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I have a lot of people and strategies in my corner supporting my best health. So much is crammed into that corner that it’s spreading out and filling other spaces and other corners. For me, this is a good thing because of the many options it provides at my disposal. I have developed a strength as an advocate for my own health that continues to evolve. If I relied solely on the medical realm, I would have limited myself to a very narrow scope of what is available. Components like a naturopath, acupuncture, and energy work receive a very luke warm reception so I steer clear of those when having specific medical discussions. Fitness, nutrition, meditation, and science-backed inquiries get more attention. People accept and believe different things are effective. Your healing plan will be individualized and fluid, just like you. Mine sure has changed over time. Use your best judgment and you will develop one that feels right for you.

A brief note: My last few posts have focused more on the medical side of my life as a cancer patient. I’ve chosen my words deliberately and have tried to convey that I support my doctors, nurses, and everyone on my team that cares for me. I fully support them. I have not expressed myself well enough if I have fallen short in conveying that message. I have also chosen my words carefully to make my voice heard as a patient. Being an involved patient doesn’t mean I am against the medical profession. Sure, there are things I would like to see change. It’s a huge motivator as I write specific posts. The idea that doctors and patients work together is key to all of it. I strive to work with them and find the best way for that to happen. An individualized health plan is part of what can help everyone work together. Health care is better when everyone involved works together.

 

Consider responding:

  • What do you feel are the most important parts of your individualized health plan?
  • In what ways have you advocated for yourself in terms of health or something else?

Patient Rights and Raising the Bar

An oncologist, radiologist, and surgeon all walk into a bar. Each was feeling frustrated because each felt he was more responsible than the other in successfully eradicating a patient’s cancer. In the midst of their heated discussion, a nearby bar stool swiveled to reveal the very patient they were debating (it was a juice bar). “You all have been a vital part in my healing, but I AM the most important factor in healing my cancer.” Each doctor was struck speechless, whereupon the patient treated each to a nutrient and antioxidant rich green smoothie.

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I’m feeling fired up today about many, many things related to health care.

Do you realize how empowered you are? YOU are the common factor that ties your specialists together. Good communication is key. Sure, they discuss your care without you, but you get to integrate that information together. It needs to make sense to you. It affects you the most. YOU are the one who has sought out complementary treatments and again the person fitting all these pieces of your health puzzle together. YOU have done the research and made informed decisions. They all work for you and your interests. YOU are the CEO of your team. That’s powerful.

A lot is being done TO you. You may feel out of control. You have rights. Knowing your rights is empowering.

  • Having complete and accurate information from your doctor about your diagnosis, treatment, and prognosis tops the list.
  • As a patient, you are entitled to privacy regarding your medical care and records.
  • You have the right to quality care and treatment consistent with available resources and standards of treatment.
  • You have a right to refuse treatment and be informed about the consequences of that decision.
  • You have the right to care and treatment in a safe environment.
  • Another big right is that you have the right to considerate and respectful care.

I want to add two additional patient rights.

One: The right to demand more research and more effective treatments for advance stage cancer.

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It seems to be an idea I keep repeating over and over. Tell your oncologist, radiologist, and surgeon. Make phone calls and write letters to administrators of treatment centers and hospitals. Find a researcher who would love to give you a tour of their lab and share what is being worked on.

I think this is a great way to create a direct line to the front line.

It also provides a face to the work the researchers do, even though I think many researchers went into their chosen profession because of loved ones who’ve been lost to illness. Every new face can continue to motivate researchers.

Touring a research lab certainly will better my understanding of work being done. It’s on my list of things to do. Spread the word to non-medical people (family, friends, coworkers, followers, etc.) so they can spread the word on the urgent need for more research for advance cancer. When more people speak up and demand more, and keep demanding more, there is a better chance that people will get more. I ask for more all the time.

Two: The right to have more equality and power with pharmaceutical and drug companies.

I feel this is an uphill battle but one worth having because those needing drugs are humans with feelings and deserve whatever can help them feel better. This one relates a lot to the aforementioned right to CONSIDERATE and RESPECTFUL CARE. It is neither when you are treated like you don’t matter or are insignificant. THEY are there for ME, not the other way around. Too often the latter is the norm. I could easily throw insurance companies to the mix.

I am tired of feeling exhausted with efforts to make a positive difference, but I will keep working to do so for myself and for others. I am so sick of arguing and jumping through hoops for what I deserve in order to be well. I have mentioned this point in earlier posts: I’m well enough to argue for myself and hoop jump, but what about the patients who are physically too tired or weak to do so? Those who are sick are vulnerable just like any other powerless or marginalized segment of society. Take your pick – there are plenty of “others” in society. They are discounted. Laws and policies do not work in their favor.

Here’s more depressing news – the cancer the specialists argued about eradicating in the beginning of the post may not have been eradicated. It should be part of the complete and accurate information you get from a doctor about a cancer diagnosis and prognosis. 30% of cases recur or may metastasize. Unfortunately, it could still be lurking, biding its time. A new cancer can also grow. You, being extremely empowered, need to know this is a possibility. You, being extremely empowered, need to stay vigilant in understanding your risks and the red flags that may suggest secondary cancer. I apologize in advance if the following freaks people out. It freaks me out, too, but I feel it needs to be shared. Jo Taylor is the founder of After Breast Cancer Diagnosis and a patient advocate living with secondary breast cancer. She can be found on Twitter @abcdiagnosis and her website is abcdiagnosis.co.uk.  The graphic below (used with permission) illustrates warning signs that should be on everyone’s radar.

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Years ago, I felt a little tired but just chalked it up to the demands of my job. A lot was going on personally for me as well. These things could very well have been why I felt tired. Many people are fatigued who do not have cancer. Cancer was the farthest thought from my mind. I have no idea of knowing for sure.

Although the above symptoms pointing to a reality (or possible reality) for some is depressing or upsetting, knowledge is power.

Let’s talk about the term healing. Semantics can be tricky. Healed cancer, treatable cancer, cured cancer. Can you be healed without being cured? I think the answer is yes. Healed is more of an element of mind and spirit. Healed and cured are probably the most synonymous. You can be healed and still have treatable cancer. You can be healed and have curable cancer. You can be cured, but not healed. And you can not be healed while having treatable cancer. I still hold fast to the idea that you are the most important factor in your healing as you have to decide what you are going to allow and how it works for you.

It’s time to get back to the doctors who walk into the bar. They may continue to argue. They may nod politely at your declaration. Perhaps they believe you. When you assert that you are the most important factor in your healing, you raise the bar of expectation in doctor-patient relationships. You change how you are perceived. You may even change the treatments offered to you. Maybe you find something that is a possibility for you that your doctor hadn’t considered. You are important. You matter. Your voice matters. The bar is important.

A patient, researcher, and leader all walk into a bar. Here’s the punch line: They are all the same person . . . you. Being an active member on your cancer care team ensures that no aspect of your care is taken for granted. Your team is accountable to you, as it should be. And here’s even more good news: The oncologist, radiologist, and surgeon have been waiting for you. They wave and welcome you to your seat at the table.

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Consider responding:

  • How do you feel you are a part of your team for your health?
  • Are there any other rights you’d like to add to your personal list of patient rights?

 

Thoughts on Oncology

Doctors’ roles are essential in healing.

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They should not be minimized or discounted. Cancer research will someday find a cure for what has affected us personally and our families. I am in awe for the dedication and care I have received. Traditional western medicine is only one route to choose. I know many who have stuck to this road with little question if something additional should also be done. Maybe they didn’t need or desire anything different. Maybe they didn’t know they could ask for anything else. Cancer was a six-month detour that blurred more with every passing year. It became part of their past.

However, if you only drive down Main Street, you only experience one part of a town. Side roads and rural areas are well worth the ride. They offer something different. You don’t have to travel only one or the other. My opinion is both are necessary to live well and/or be cancer free. You are the patient and in control over decisions that affect you. My healing plan consists of many side roads and rural areas that have made a positive difference for me. I am the common factor and pull it all together.

It has been so much more than a six-month detour for me. Parts still have blurred. I have traveled on many roads to get where I am today.

It seems strange that I haven’t blogged much about chemotherapy or my oncology appointments. Chemotherapy has been a focal point for far too long. It sucks energy and manifests more physical symptoms than I care to list. It sustains life while it kills cells. Chemo is reassuring and comforting in its own way. It ranks high as a huge part of my healing plan. I have hit my 100th treatment. That’s pretty significant. It isn’t a celebration, but I am checking off the box and moving on. I am still here.

There are so many other aspects in addition to active treatment that I think are also important to an integrated approach to a cancer healing plan.

A strong doctor-patient relationship is vital for my living as healthy as possible.

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The relationship I have with my oncologist is a really good one. He deserves credit for sticking with me, listening to me, and working for what I want. He knows how I feel. Yes, I’d love to be someone who visits her oncologist once a year, and eventually less than that, but it’s not the kind of survivor I am. I’m getting active treatment. I go to my doctor a lot. Sometimes it means I may be a pain in the butt. I do get all my questions answered. I even come up with some good ideas from time to time. The good news is my oncologist doesn’t have a chance to forget about me. If I don’t speak up for me, who will? I am my own best advocate.

Oncologists differ from one another. They’re human just like the rest of us. I met with a couple oncologists at Mayo Clinic in Rochester, MN, shortly after my initial diagnosis. Overall, they agreed with the treatment plan suggested at Carbone Cancer Center in Madison. Mayo was more open to surgery options. I liked them quite a bit but it was just too far a trek for regular care. I had top-notch care a few mere miles from home.

A couple of years ago I sought out another second opinion within my provider network and it wasn’t very helpful. It wasn’t hurtful either, just not worthwhile. This oncologist let me know what his opinion was on my options. I let him know what I thought of his limited research. He was not open to complementary cancer supports. I was not a good fit with this oncologist. In my opinion, he defines healing with a very limited scope. Every once in a while I see a clip of him on the local news. He has a great reputation, but I am so glad I have the oncologist I do, who also has an excellent reputation. My position is that healing includes many different aspects that work together.

I’m going to repeat that: Healing includes many different aspects that work together.

No one heals in a sterile petri dish or test tube.

My health journal helps keep all my medical information together.

A health journal has been incredibly useful for my oncology visits. It really helps with dates and specifics as to how I’m feeling, my questions, how and when medications were tweaked. I am a planner. I make the most of the short time I have with my doctor. Sometimes it isn’t so short, but again, that’s the kind of survivor I am, and I’m going to take the time I need. My health depends on it. I believe one reason I’m still doing well is because I’m able to keep really detailed notes to report to my doctor and have one place to keep all my information.

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I’m also more of an anxious person than I used to be. Cancer and anxiety go together. Keeping a health journal eases some of my anxiety because it gives me power. An added benefit is the built-in memory that naturally exists with documentation.

Ask questions. A short office visit doesn’t suffice for what I need to feel as a satisfactory visit, even with my health journal in tow. It wouldn’t hurt if office visits were about ten minutes longer than they are now. The oncology nurses are good resources in getting word to your doctor, as is electronically messaging your doctor through MyChart or any similar online technology. I am important enough, and so are you, to have your questions and concerns answered and acknowledged in a way that you understand. It is okay to disagree. I do believe everyone is there to advocate for your best care, but that doesn’t mean you blindly agree to something you don’t understand or have reservations about. There may be something even better for you.

I do believe the answer, a cure, lies in research and things like immunotherapies, targeted treatments, genomics, personalized medicine, and medical advances that haven’t happened yet.

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This is why research for advanced stage cancers is so important. More research dollars need to be allocated to advanced stage research! Click here for some suggestions. There needs to be a lot more access to better treatments and drugs that are more effective for those of us living with secondary cancer. We deserve access to advances in immunotherapies, targeted treatments, personalized medicines, and new therapies. It isn’t an option to run out of options. Keep telling your oncologist this over and over again. They meet with the other oncologists in their network to discuss cases. If they keep hearing these demands from patients, it’s more likely medicine will go in this direction.

Keep speaking up.

Patients can help steer these discussions by continuing to advocate for what they need in their office visit.

Healing and a cure are not interchangeable. A cured person may not be healed. Trauma, fear, and other physical or emotional issues can still interfere with living fully. Healing and a cure will inevitably overlap as healers, doctors, and patients work together. Stranger things have happened. Healing and a cure absolutely can overlap. I keep striving for both.

I am ever hopeful I will find a way. Always.

Trauma, Cancer, and Hope

Trauma

A good friend spent part of her weekend doing some reading on trauma for work and discovered the acronym H.O.P.E. standing for the phrase Hold On Pain Ends. She knows I have tremendous faith in the transformative power of hope. Holding on and believing that all will be well again is a wonderful feeling and vision for healing.

Many people think of trauma as it relates to military personnel who return from active duty with PTSD. People who have been in accidents, suffered abuse, had violence directed at them, witnessed atrocities, been through disasters, lost loved ones, and have been through (or continue to go through) an illness also can be diagnosed with PTSD. Any negative event can cause trauma.

Cancer and Trauma

PTSD is a mental health condition that develops after exposure to a traumatic event. Cancer survivors have experienced their fair share of traumatic events. Painful and emotionally stressful tests, treatments, receiving bad news, hard emotions to process, and living with chronic or painful physical issues are possible sources of trauma. Looking in the mirror at a changed body, living with lymphedema, and having the pain of neuropathy are daily reminders for some people. Fear of recurrence may always be on a person’s mind. Some anxiety is normal and quite frankly unavoidable for cancer patients and survivors. When these feelings persist or worsen, it could be a sign of ongoing trauma. Symptoms may include things like nightmares, trouble concentrating, feeling fearful, guilty, angry, avoiding things that trigger bad memories, and loss of interest in people or activities you used to enjoy. Other possibilities may also cause these.

I believe seeking professional help is the best approach to address working through trauma. Sharing what is painful can help identify the root cause whether the pain is physical or emotional. Effective solutions can be tailored to a person’s specific needs. Speaking to family, friends, or support groups are other possible choices. Even writing it out can be helpful in sorting out what you think and how you feel as a pathway to ending pain.

Hope

My thoughts keep coming back to that acronym about holding on because pain ends. Hope is hope. How else can a person take an active role in feeling physically and mentally healthier? No official trauma labels need to be involved. Everyone has times where something painful is experienced. I am not a mental health professional, but nonetheless have a few thoughts to share for dealing with pain. I think of it as a way to Help Other People Excel. I can’t say that’s original. I also can’t find a source to credit.

Pain can be a teacher.

Sometimes I need to experience pain and sit with it so I know what not to do. When I’m sore, my body is often bringing something to my attention. I may need to rest. Maybe I’m doing a movement incorrectly. Possibly I’m using new muscles and my body is thanking me for using them but reminding me to do so gradually. I’m also being taught something if I experience emotional pain. Every experience teaches me something, even the ones I find emotionally difficult. You can’t ignore physical or emotional pain. Both get worse if you do. Listen to your body.

Grief is allowed.

You can’t just “get over” things. Just as with the grief when someone passes, many events can still be a passing of something and involve grieving. Again, just as with the grief when someone passes, it comes in waves. One day you are just fine with not working and having a flexible schedule, and the next day this very same thing has you in tears all day. Some insensitive comments leave you unfazed, and then there are others that you believe are beyond cruel that echo over and over again. Some grieve body parts. There are many things you “used to” do that now no longer exist. Those who have had cancer have lost a lot. There can be unexpected spurts of grief that come at the worst times. It’s normal. Allowing yourself time to feel feelings will eventually lead to more good days than bad.

Find a new focus.

Starting something new gives an opportunity to move forward with something different. Fresh starts have their merits. It could be a new hobby or interest. I have mentioned before that working out has turned into a positive focus for me. I also have more time to write. Maybe it’s something bigger like a new job, relationship, home, or city. Change may be exactly what is needed. If nothing else, change serves as a good distraction. Everyone needs a break from whatever makes life harder.

Exercise.

Here is my repetitive plug for exercise. Physical activity can help you see you are stronger than you know. This helps physically and emotionally. I have a long ways to go to make myself even stronger, but I’m stronger than I used to be. Exercise helps me feel more confident and in control. It makes me feel good. I feel less stressed. Exercise provides an opportunity for me to work on my inner strength while I work on improving my body. Finding and reclaiming power by moving is extremely therapeutic. Work with a punching bag is a very effective way to reclaim power.

Get outside.

The effects of being outdoors for me are similar to exercising. It makes me feel good and less stressed just like exercise does. Fresh air and nature calms me. Problems often sort themselves out as I spend time in the woods. My head always feels clearer. Maybe it’s because nature is grounding. If you do not have access to a handy outdoor source like a park, farm, or green spaces, something as small as a garden plot can give you the opportunity to dig, to let dirt fall through your fingers, to weed, to plant, and to watch something new grow. Container gardening has become very popular in areas where green space is limited. This is also a great option if you have some physical limitations. Sitting in the shade with a refreshing lemonade and reading a good book still counts as getting outside.

Forgiveness.

Forgive yourself for past actions. I have heard a lot of people say how important it is to forgive others, show universal love and kindness, speak positively, and have at least one good friend you can count on. All important. Even more important is to forgive yourself, love yourself, have positive self-talk, and be your own friend. I have been pretty hard on myself and now I am much kinder. I believe pain can end when we treat ourselves like we treat others. Each day is a new opportunity to treat yourself well with kindness and forgiveness. Reset every morning.

Believe.

Believe in hope. Expect the best. Hope begets hope. For me, things always come back to my unwavering belief in hope. One of my favorite hope quotes reads:

“When the world says,

‘Give up,’

Hope whispers,

‘Try it one more time.’ “   – Unknown

I love that the source is unknown. It somehow makes it even more appealing to me. It’s as if there is an anonymous and universal whisper that could be from anyone anywhere in the world. The whisper may be a gentle hush. I like thinking of it that way. I see it in the flame of a candle. I hear it when a bird sings. I feel it with good friends. I find it in some of my favorite places. You know where some of those places are if you know me well.

Here is one of my favorite places where I hear the hush. Can you hear it, too?

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Author Anne Lamott describes a hush as something sacred. Hope whispers softly and pushes us to keep trying. Hope as a hush is sacred indeed. Pain ends. Hope remains. It can replace pain and grow exponentially. I continue to listen to the whispers of hope.

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?