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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Image credit: pixabay.com

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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Image credit: pixabay.com

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?

 

Laughter As Medicine

“The earth laughs in flowers.” ~ Ralph Waldo Emerson

We need friends and laughter like we need sunshine, rain, and flowers. Today’s post combines all of these.

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My friends are beautiful flowers who fill the world with laughter. Sometimes we laugh together and other times we laugh at one another.

Some of my friends are comical without trying. Fran is one such friend. I spent a lovely day with her and another dear friend Gayle at a garden last summer. Both make the earth laugh in flowers. Being together at a garden was a perfect choice. It was a beautiful summer day, punctuated with an isolated downpour that was brief but heavy. The three of us had been sitting in a little secluded resting spot, taking a break as we visited. We’d discovered an alcove up a short stone path of a few stairs with three Adirondack chairs positioned just for us. A canopy of green leaves kept us shaded and let just enough light to be filtered through to turn the leaves into shining emeralds. Behind us water gurgled its way in a peaceful stream. Life was but a dream. The setting couldn’t have been more idyllic. Fran regaled us with a humorous story about her mother.

It started to sprinkle and we all figured it would pass over quickly. The trees kept us from getting wet. However, when it didn’t stop in a couple of minutes and was getting worse with every drop, Gayle and I decided we wanted to take cover and headed to a covered shelter we had passed about a minute away at the bottom of the trail. Gayle got there first. I was a bit slower. The stone walkway was getting slick. The raindrops were getting much bigger and frequent, but I couldn’t risk running and slipping. I only had about ten more yards to go. I just made it as the sky let loose with a pounding rain that was worthy of flash flooding. Gayle and I were safe and mostly dry.

Where was Fran? Gayle and I stood and waited. We thought Fran was directly behind us. The shelter filled quickly with others, but no Fran. She couldn’t possibly be waiting it out. Another minute passed and finally there came Fran, slowly making her way down the stone staircase, step by step, toward the shelter. I was glad to see her even though she was already pretty wet. However, at the last moment, Fran darted to her left on a path off to the side. A row of trees blocked her movements. There was nothing in that direction, nowhere to go! What was she doing? I wasn’t going looking for her. Gayle wasn’t either. We were dry.

It’s as close to a Yeti sighting as I’ll ever get. One minute something incredible and unexpected was spotted, and the next minute it was gone with no proof of it ever existing. It’s both a moment frozen and lost forever in time.

I shouted out, “Fran, are you okay?”

Several seconds passed slowly.

“Yes,” came her eventual reply.

She sounded close, but wherever she was, she stayed put. Why?

A couple of minutes later Fran emerged on the path again. It seemed wherever she thought was a refuge, was not a safe haven at all. Sheets of rain showed no sign of relenting. At last she made it to the shelter. Time stood still while she made her way for the final ten or twenty yards. All eyes were on her. It was impossible not to feel sympathy for her. While that was true, it also was impossible not to find it funny. The heavy rain still pelted everything in its way. Gusts of wind blew the rain sideways, and as it happened directly at Fran.

Fran was completely drenched. She could not have been wetter had she been plucked from the ocean after falling overboard. It was so sad, but beyond funny. All I could do was shake my head from side to side as I repeated the word “No” over and over as I laughed unapologetically. It was hard to breathe. Fran stood there wringing out her clothes. Her wardrobe had surprising sponge-like qualities. She dripped. A lot. Fran tried to brush the whole thing off. All the dripping and puddles around her told a different story. Gayle whipped out her phone to capture the moment as a truly good friend naturally would, but didn’t get the shot after all. Such a pity.

Fran never really explained why she wasn’t following us or included a detour in her plans. I’ve never asked for an explanation. Somehow I think it would ruin the story if she explained her perspective. The sun came out, we regrouped at my car where I had some towels, and we moved on with our day.

That Fran.

Laughter really is the best medicine. Antibiotics can also be the best medicine. Laughter isn’t going to combat a bacterial infection. Antibiotics will do the trick there. I believe laughter is going to help in any cancer treatment plan because it will help lift spirits during dark days. But laughter does more than simply boost spirits. Laughing can reduce stress and anxiety. It’s been called a natural anti-depressant. Endorphins are released so you feel good. They even are said to relieve pain. Immune system functioning is heightened. Laughing has been linked to a healthier heart and increased levels of HDL (the good cholesterol). It can even tone your abs and that’s no laughing matter. I can handle less stress and anxiety. Feeling good inside with better immune system functioning while getting the benefits of a free ab workout works for me. All of these are incredibly healthy benefits from laughing.

Flowers do more than add color, fragrance, and beauty to the world. I believe they also have health benefits. “People flowers” make us laugh. They help us heal. I am lucky to have wonderful such flowers in my life. I’m not just keeping them around for my abs. I’m keeping them around because I love them and they are good medicine.

What makes you laugh? Who makes you laugh?