Ultrarunners understand RFMs- relentless forward motion. We often use our determination and mental strength to carry us forward through discomfort and difficult situations in our personal lives and work lives in addition to our athletic pursuits.
I had a conversation with my friend Lisbeth Overton yesterday in a podcast for Nurses' Week (listen here). We talked about the difference between moving forward one foot in front of the other in a way that breaks you down, versus moving forward intentionally with progress. I want to say more about that because right now, between healthcare and the crazy shit happening in our country, it can be easy to go to a place of despair.
I've found myself over the past month deteriorating into that place of despair and realized I need to get out and move more. I have been so bad about allowing myself to not go outdoors to run in the bad weather this winter. I need the fresh air and the brain break it gives me. Being a bit of a political news junkie and overthinker has not been working in my favor lately.
Lisbeth and I talked about how so many nurses are struggling and frustrated with the opportunities and working conditions their profession affords. They want to use their knowledge, talents, and skills to truly make a difference in patients’ lives, but often there is no place for that in the task-oriented, rushed and understaffed workplaces of healthcare facilities and hospitals.
Many nurses wish they could break out of the grind, find a better job that allows them to practice patient care they way they’d like to. They can feel stuck, which leads to despair, low morale, burnout, and health problems, none of which are good for taking care of sick people.
There are two ways you can move forward: one is to grind through, trudging with dread because you feel like you have no choice. The other way to move forward is by taking small steps, still moving forward, not any faster, but with intention and action, no matter how small those actions are, but doing something to move yourself toward better days.
The lesson, I think, that ultrarunners have learned, that sedentary people need, is that active leisure is such an important and undervalued part of our lives. It seems that so many people have forgotten how to play. Too busy chasing material objects, or buried in our electronic gadgets and devices, we end up sitting down as time flies past us.
The time focused on a screen takes away from the time we’re aware of our environment, using all our senses, learning, and appreciating what is in our world at arm’s length. Unaware of our surroundings, we could be moving and breathing, paying attention, burning calories, reducing our fatigue, circulating our blood, and boosting our mood and energy.
People who have not pushed themselves toward physical goals, who are not athletes, often miss out on the rich lessons that athletes learn, of pushing beyond prior achievements, and refusing to accept outwardly-imposed limits. We're always looking to go further, in distance, time, space, or experience.
Working with cancer patients, acutely ill people, and those with chronic disease, I've observed what being an athlete can do for a person in terms of mental and physical strength. Athletes who do get sick are at a big advantage, not just in terms of likelihood of recovery and regaining function and quality of life after an illness, but in coping with the physical and mental demands of an illness, even when there is a discouraging prognosis.
I used to say to my co-workers in the hospital, that it was easier to run a fifty miler than work a twelve hour shift. None of them believed me, but for me it was true. If you're going to be on your feet for 12 hours, you might as well be outside without crazy demands on you every second. Plus you can eat, drink, and pee whenever you want!
When it comes down to it, nursing is about public health, helping people (the public) get healthier, function more effectively, and live better lives. All of the major issues facing our country right now are connected to public health. Here is an incomplete list:
1. Income inequality- the greed, sociopathy and lack of empathy that leads us to a place where a few people have the overwhelming majority of wealth so that large numbers of people are unable to meet their own basic needs or access adequate services that allow them a decent opportunity at a decent standard of living and level of health. People who have to work two or more jobs to pay their bills are unable to take care of their own health.
2. The lack of mental health services, proper care and treatment of addiction, unaffordability of health insurance and prescription drugs, and near-monopolies that destroy competition and drive up prices, make decent healthcare out of reach even for those with health insurance.
3. Our stressful lifestyle- too many people are working too hard for too little compensation for things that are too expensive and often unnecessary. Poor community planning leads to overreliance on vehicles and commutes that are detrimental to our environment, people's health, and financial well-being. We don't have enough mental health services available and people don't demand them because of stigma associated with mental illness.
4. Obesity and metabolic disease are an epidemic, for many of the reasons cited above- community planning, mental health, low incomes, working several jobs, lack of education, feeling powerless, cycles of abuse...
5. The opioid crisis, a result of greed, poverty, lack of mental health services, lack of education, unemployment, family and social cycles of stress and despair.
6. The gun violence epidemic- children and teachers shouldn't be traumatized by the idea of being shot at school, and parents shouldn't be traumatized by dropping their kids off at school to get an education. We had another shooting this week in Colorado in Highlands Ranch. Our U.S. Senator Cory Gardner, big NRA money recipient, has blood on his hands. AGAIN. And again, nothing is being done legislatively to stop this.
I think if we could solve one of these problems I think income inequality and the factors that lead to it are the key. I think nurses need to make it our business to push for social change. And I don't think we've done nearly enough on that front, at least not in a publically vocal and visible way. Nurses care for other people regardless of who they are, their background, what they look like, or other characteristics. No matter how much the current sociopathic executive in chief wants to erode this.
Nurses could teach the public a lot about how to truly care for others and to see the humanity in everyone. I think it is something we've lost in our country- the idea of caring for others and considering others' needs before asserting one's privilege and "rights". If we cared for and about each other, we would be caring for ourselves, too.
My friend Nancy Stordahl is one of my favorite bloggers and she always posts things that get me thinking. She writes a blog about breast cancer and loss. She provides the inspiration for many of my posts, here and in the oncology nursing articles I write. This time she has asked a dozen questions for a blogging challenge to share with readers and other bloggers. If you're new to this blog you can learn a little more about me and my blog.
Here are the questions and answers:
1. How long have you been blogging (or reading blogs)?
I started blogging in January 2008. I've been reading blogs since before that, but my decision to finally run Badwater after dreaming of it for years got me going on this blog, and I haven't stopped blogging since.
2. How has your blog changed?
It has changed from the main topic being running ultras to a variety of things I'm passionate about. I still blog about ultras, but I don't compete or race as often as I used to. For me it's more about getting out and enjoying being outdoors and moving, and the spiritual, mental, and physical benefits (probably in that order, too!) I get from it. I write a lot about nurse advocacy and healthcare, cancer, as well as politics and my own thought processes while I'm out there moving forward on my feet. I like speaking my mind and every so often I've pissed someone off with what I write, which tells me I'm doing it well.
3. What is your biggest blogging challenge/frustration?
Having enough time and energy to write the posts when so much of what I do for work involves writing. It's hard sometimes to want to write for fun, and often I want to write something, but I can't bring myself to sit on my butt for any more hours.
4. What is your favorite post that you’ve written (or read)?
My favorite posts that I've written have to be the series I wrote about Badwater- my first time running it, my second time running it as a double, and my experiences on the medical team and what I learned. Also, the "So ya think ya want to run Badwater" has been the most viewed post. As far as reading blogposts, the old classic from Larry Gassan about people whining at ultras has to be my favorite all time post- it's funny and timeless.
5. What are your goals for your blog?
To convey what goes on in my mind when I get out there and do long miles on my feet. To show the thought processes that result from running ultras, and how they support my mental and spiritual health, and creativity. And I hope it shows other people that it's okay to be different and think differently from the mainstream.
6. How many blogs do you read on a regular basis?
Wow. I couldn't even count them, but my favorite blogs range in content from healthcare, cancer, politics, news and current events, nursing, food, and miscellaneous interesting topics I find randomly. I read at least several blogposts a day.
7. How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)
I have to be careful when it comes to healthcare and cancer, just to protect the privacy of people, and I don't want to post anything embarrassing to someone when it comes to any topic. But I don't hold my feelings back.
8. When things get hard, what keeps you blogging?
Knowing there are readers who have stuck with me and do read my posts. A lot of times they comment to me personally via email or in person if they live nearby, or on Facebook, instead of in the comment section, so I know they are reading. And there are followers out there who I find out about- who don't list themselves as followers in the Google sense of the word. Sometimes it can take me months to finally catch up on a topic, but I do get around to it. While I was writing my book that was the hardest time to keep blogging, since the book was published, I have been better about keeping up with the blog.
9. What is your biggest Cancer Land pet peeve today, right now, this minute?
People who treat cancer like it's a race or sporting event. When they tell a person with cancer "you got this!" or "keep fighting" or the other cliches from CancerLand. Who are they to say these things? I know they mean well, but they sound so stupid. Like a cheerleader with pink pom-poms. How do they know the person has "got this"? How do they know "fighting" is going to help? It's like they have this back channel to a divine power who assures them that their friend with cancer is going to be okay? I am sure the person's family and oncologist would like to know that too... I hear it so often, it just gets really tiresome. That's one of the things I wish they would read my book for- to understand that there are better ways to support people with cancer, and to learn something real and useful about cancer before they are faced with it, in themselves or someone close to them, so they can be part of the solution, instead of exacerbating the problem and giving false hope because it makes them feel better about their own fears.
That probably sounds judgmental and harsh but that's how I experience that social phenomenon.
10. What one piece of advice would you offer to a new blogger?
Do it, write what you want, don't worry how you sound. Your readers will find you and you'll attract a following. Just keep at it. If people don't like it, they don't have to read it.
11. Share something most people do not know about you. A secret sort of thing.
When I'm not out running, my favorite thing to do is be home with my dogs and just hanging out. I'd rather do that than be around other people.
12. What do you enjoy doing in your spare time?
Playing with my dogs and scratching their bellies, gardening, cooking, hanging out with Dennis (my husband) and photographing scenery and landscapes, in hopes that someday I'll get motivated to paint in pastels again.
One of my pet peeves is the strain of armchair oncologists who seem to proliferate unchecked, spreading their genetic pollution and bullshit among the human species.
Those are the people who have no education, training, license, degree, board certification, or experience in the practice of the medical specialty of oncology, but possess the unabashed confidence that they know what will cure and/or prevent cancer better than anyone. Especially anyone who promotes the conspiratorial discipline of western medicine that is surely out to irradiate, poison, and depilate us all so they can laugh all the way to the bank. (Please, I’m being sarcastic here).
At the risk of sounding like JP Sears I need to release my frustration and exasperation. (I think JP Sears is hysterical and I wish he would do a video on curing cancer, it would be hilarious. And it would benefit me immensely- he could be the one offending people, allowing me a safe harbor for avoidance)
Since I rarely avoid confrontation anymore, I frequently set up a table or booth at health fairs and public events where I can promote my services and interact with people to discuss cancer. My cancer literacy booth contains information about why it’s important to think about cancer even if you’ve never had it, and has a list of common myths vs facts, basic information, and resources.
In these events I find out what people are thinking, seeing, experiencing, and perceiving about cancer. It helps me direct my information more effectively in meeting their needs. I often deliver educational presentations to dispel myths and misinformation about cancer. While I soft sell my book and my services as a survivorship health coach, speaker, educator and writer, one thing I do not do is hard sell products or services. Especially not products.
I frequently get cold calls from hucksters hard selling the latest in nutritional products or supplements who think I’d be willing to spread their crap to my own clients. They find out quickly how mistaken they were in contacting me.
When I set up my booth, it’s always hard at first to get people to come to my table- they see something about cancer and they avoid eye contact, the ambivalence is palpable from across the room. There’s some fear, but they are curious- it’s that morbid curiosity, yet they tend to stay away unless I can make eye contact with them and draw them in.
And there is always one person, who thinks they know what to do about cancer better than anyone else. They’ve never had cancer themselves, of course, but they know. And they come right up, without hesitation, complete with chest-puffing bully bravado and steam coming out of every orifice.
As it was with Kombucha lady.
She ambushed me before I even saw her come up to the table.
“Do you use Kombucha to cure cancer?” were her first words to me, before I could even greet her.
Her question took me by surprise at first- maybe half a second- and then of course I knew what was coming. I said, “No, I don’t.”
She shot back, “DO you know what Kombucha is?” As if I surely didn’t know.
In a covertly snarky but fake validating tone I said, “Yes I do know.”
First, there is nothing in my booth that says I cure cancer. I am not a doctor and I’m not even providing nursing care- what I do is called education. I even have a disclaimer that says all of that.
She gave me the side-eye like she didn’t believe a word I was saying. “Kombucha is better than any of that chemotherapy or radiation or those other cures that just poison you. People who drink Kombucha are completely cured- but the medical profession doesn’t want people to know that. There’s been research too. It’s all been hidden and it’s done in Russia. There’s this one place in Russia where everybody drinks Kombucha and nobody has cancer. You should look it up.”
She almost stopped but before I could reply, she continued, ”I know this goes against your western medicine point of view, but it’s true. You need to look it up. And I know, because I’m a PhD candidate.”
Oh, Lord.
I don’t think she saw my business card that says I have a PhD. I know she didn’t read anything in my display. I didn’t say anything to her that would convince her that my point of view was entirely driven by Western medicine. I scrambled for something to say that would either make her shut up and go away, or disappear. I didn’t have any water to throw on her.
“Well that’s great, with a Ph.D. you will be able to research that and when you have the evidence you can shout it from the rooftops.”
“Oh, it’s already there. They just don’t want you to know.” And she whirled out of there as fast as she arrived.
So...I hope she enjoys her doctoral program at Trump University.
No Ph.D. program can possibly fix stupidity or social ineptitude.
Debriefing for the masses
1.If she were truly a legitimate Ph.D candidate, she would:
• have an understanding of the scientific method. I can only imagine her professors hazing her when it came time to take her comprehensive exams. • know better than to make assumptions, • realize that we learn more through observation and listening than we do by asserting our opinion loudly and forcefully with a complete absence of self-awareness, • have humility instead of arrogance- the more you learn, the less you know. I would have to say if you take nothing else away from a doctoral program, this is it.
2. I didn’t even get a chance to ask her if they did randomized controlled trials. Not that she would have understood what that means. You can do any kind of research you want, but you can’t try to pass it off as more than it actually is. You have to state the limitations. If there was no control group, then you must state that. If subjects are assigned other than randomly to the study groups, or if it is subject to bias or being contaminated by other variables in any way, you must also state that.
3. I did in fact look it up, for my own amusement. I was curious as to where she got this information and what she was reading that made her such an expert.(I didn’t even get a chance to ask her if she’s ever had cancer or anyone close to her has.)
As it turns out, most of the studies done on Kombucha that have been documented in peer reviewed journals are from 10- 20 years ago. Most of them were on green tea, not specifically on Kombucha, and the tea demonstrated certain activities in rats, mice, or in test tubes, but not in humans. It’s quite a stretch to take findings from animal or in vitro (test tube) studies and assume those findings will be duplicated in humans.
There have been more recent studies of the effects of Kombucha tea, but there has been no body of evidence based on repeated studies and similar or consistent findings. Anyone who cites “a study” and tries to generalize from that study’s findings also does not understand science. I’m not saying that they never will find evidence of benefits in the future, but the necessary body of research to draw conclusions has not been done.
The antimicrobial and antiproliferative findings of the tea were in test tubes, not in live subjects, and in Japan, where their culture, diet and just about everything, is different from the U.S.-you can’t generalize across cultures when there are so many confounding variables.
I could not find any human clinical trials of kombucha tea. And also, it’s a fungus- if you are suffering from a cancer that weakens your immune system- such as some blood cancers like leukemia- you might be hurting yourself more than helping by drinking that swill.
4. You can fix ignorant, but, as I said above, you can’t fix stupid, or social ineptitude.
So, like JP Sears would likely say, in his wisdom, yes, you have the right to be offended and to remain ignorant. You have a right to your own beliefs, but remember they are beliefs, not facts until shown to be real with scientific evidence. Furthermore, don’t even try to pass your beliefs off as facts and don’t spew and proselytize them as fact. By sharing your beliefs as facts, that’s deception, and with cancer, it could get someone killed.
5. Videos, documentaries, and advertisements that sell products making claims to cure or prevent cancer that fan the flames of ignorance, paranoia, and conspiracy theories is deception. When you make assumptions that you know better than years of scientific research that has millions of cases of demonstrated benefits and successes, you are acting without compassion, and certainly without empathy, unless you ask someone who has had cancer and been treated for it and find out what their experience and outcome has been after 5, 10, or 20 years.
6. People need to understand the difference between what they know and what they believe.
What's Missing
Most misconceptions behind the misinformation about cancer stem from a few misunderstandings.
We can fix ignorance. We can get people to think more critically and raise their level of understanding and awareness of the world around them. They need to be willing to do some work. They also need to be willing to be challenged in some of their ingrained beliefs.
The most common misconceptions about cancer that I hear from the lay public are:
1. Cancer is one disease that behaves predictably and each person’s cancer is like every other person’s cancer, so there must be one cure. There is no thought given to the differences between individual people, their environment, experiences, or their immune systems.
This is a holdover from the old, old days when we thought cancer was just one disease and we had much less knowledge and understanding about cancer. The lay public has not caught up in their knowledge, so we need to improve cancer literacy and bring it up to date.
What we know is that cancer is a disease of the cells’ genetic material that results in uncontrolled growth of those cells. It manifests in hundreds of different ways and cannot be completely predicted or generalized from one case to the next. It can arise in different organs or parts of the body and be triggered by different chemical signals, proteins, and alterations in genes that cause cells to behave differently than normal.
2. Mistaking “genetic” for “hereditary” and thinking that when we are talking about genetic mutations we mean hereditary mutations that are passed along from one generation to the next. What we know now is that most cancers are caused by somatic mutations in a person’s body- in your DNA- that affects the way your cells in your body function-not anyone else’s- that have nothing to do with the germline passed down through families.
3. They think cancer is caused by something definable outside of our bodies, and that it’s a matter of simply avoiding that thing and you can avoid cancer.
4. They think we can cure cancer with one thing- we just haven’t discovered that thing yet, and when we do, it will be the end for cancer. (See conspiracy theories below)
5. They think that cancer can be cured now. It depends on how you look at it. Since we can eradicate detectable cancer cells in the body, but there could always be a stray cell or more somewhere, we don’t know that for sure even with our most advanced technology, PET scans or blood tests. If the cancer is treated and never comes back, we tend to think that’s a cure. But we use the term “remission” because we never know if it will come charging back one day. We also know that if the person doesn’t have a trace of the cancer for many years, likely they are in permanent remission (or cure, if you wish to call it that). But you can never assume completely. And that is why people who have had cancer always have anxiety about it coming back.
6. This is the thing that peeves me the most: They want nutrition to be the holy grail of health. Because they can control what they put in their mouths, they get this false sense of security and arrogance that they can keep from developing cancer. Some people are like that with exercise. They think that stringent exercise programs will prevent it. They will not.
What we do know, through bodies of evidence, is that the healthier and fitter you are, the less likely you are to die from most chronic diseases. And if you do have cancer, and need treatment, the healthier and fitter you are, the better the outcome is likely to be. Less loss of muscle mass, less fatigue, fewer side effects from medication and treatment, and faster recovery after treatment.
7. Some people think cancer is contagious. It is not. They think death is contagious too, even when the word is spoken. that’s why they are so scared of having the conversations about cancer and advance directives and end of life planning and all of the other things we could do to make our lives so much more comfortable, meaningful, and enjoyable all the way to the end.
8. Medicine has the answers, so if we do get sick someday, we can rely on medicine to cure us, like antibiotics for a cold (being sarcastic, again: What we know is that antibiotics will not help a cold caused by a virus. Antibiotics work to kill bacterial infections.)
The problem with this mentality- thinking medicine will cure it- is that it ignores the responsibility of the person for staying healthy. Too many people live unhealthy lifestyles and have bad habits that lead to chronic disease such as diabetes, cardiovascular disease, obesity and metabolic syndrome, and chronic lung disease. They think medicine will save them. And they think the same way about cancer medicine, but when they are diagnosed with a very aggressive cancer or a very advanced cancer, they expect medicine to save them, when it often cannot.
Yes, we do a good job of advancing medicine and medical interventions, but not on building supportive social skills and services. We follow the money, not the quality of life. You might be able to get the medicine, but you can’t get your life back. So you need to take responsibility for that too. You can’t act like a victim when medical interventions don’t do what you wish they would.
I think we could combat this victim mentality by giving people the skills, tools and knowledge to take better care of themselves, of course that would require they were self-disciplined and motivated enough to use it. It's not that simple of course, but if people would take more responsibility for their own health it would help.
I’m not saying there is no greed or deception in mainstream medicine, quite the contrary. I think the healthcare industry is polluted through and through with greed in this world of mergers and administrative growth on steroids. People with fewer resources, who don’t have access to healthcare, education, income, and opportunities are at a great disadvantage and we should be fixing those inequalities now. The current status of the healthcare industry in our country is shameful and self-serving.
Conspiracy Theories
To the people who say there is a conspiracy around cancer- that “they” already have the cure but “they” won’t tell us because then the pharmaceutical and healthcare industry would stop making money- how is making money on drugs any different than making money on the untested supplements and natural products you are pushing with claims of better health?
While the healthcare industry is far from innocent when it comes to greed, and I think think they are even more subject to political influence than they were in the past- there is no difference in my mind between medical industry greed and the greed of the multi-billion dollar natural medicine/food/supplement industry.
The only difference is that in mainstream western medicine, the science is better established. It adheres more closely to the scientific method, does randomized trials, has far larger numbers of subjects, and has more regulatory oversight and safeguards than the supplement industry. Like anything else, this could change. But show me the bodies of evidence so I know you’re not just selling me what you believe.
Solutions
I think educating the public is one of the best solutions. We need to get people to understand the importance of having the tools, skills, and knowledge to be able to survive encounters with the healthcare industry.
I wrote a book with lots of solutions in it, for people at all levels of involvement in healthcare. The prevent-prepare-prehab section in the appendix is a rough description of what I'd like to pursue- building cancer literacy among the public. People tend to push the idea of cancer aside, which is understandable. It’s scary, but it’s even scarier when you have no idea what’s ahead of you.
Having a little knowledge and preparation beforehand is not that difficult, and could make a big difference especially for those who have no family members or close social connections who are healthcare professionals. Having someone to advocate for and/or with you when you confront a serious illness is essential. The industry is too complex to go it alone, even if you are a healthcare professional.
The moral of the story is, drink all the Kombucha you want, I harbor no grievance against you. Bathe in it, mainline it, dry it and snort it, just don't tell me to use it to cure cancer.
I have puppy brain! We are announcing the arrival of the newest member of our family, Miss Velcro. She is a red tri and she was born 5 weeks ago. We will be bringing her home in another 3 weeks.
We are so excited! As soon as I saw her picture, I knew she was the one. It was love at first sight. I could not stop thinking about her, and as things unfolded with the litters at Sky Blue Aussies, she was available. We have our eye on another pup who is only 3 days old as of today, so I will fill you in as soon as we know everything is certain with our second puppy. Velcro will have a sister, and most likely she will be coming home a month after Velcro.
Running is minimal but more consistent. I'll talk about that below, after I get the shitstorm off my chest.
Recent Random Thoughts
I haven't been writing on my blog much, it's been hard with all the distractions, between puppy brain and it being Pinktober, the month where cancer and pink become intertwined and there are a lot of things going on. I spoke 3 times in one week, and I have more coming up before the month is through.
I had somewhat of an "aha" moment yesterday when I was thinking about my struggles with getting my program off the ground. It's a challenge to get people to want to do something. Everyone I talk to about it, including healthcare providers, sees the obvious and intense need for this type of education for patients and their caregivers. But there are a lot of barriers to people being able to use it in the way it is intended. I've been barking up the wrong tree trying to get it through the traditional healthcare channels.
One thing I am doing, that should help, is writing a book, which will not only have the program in it, but will also discuss why everyone needs to be in on this. Healthcare is so screwed up and it's only getting worse. Absolutely unsustainable. Yet cancer is about to overtake heart disease as the number one killer of Americans, and our healthcare costs are rising at an insane rate, and our health outcomes and general public health are getting worse. We have more obesity and diabetes, more lifestyle-related illness, and our administrative costs of running the healthcare system are exceeding our ability to put our resources into patient care and education.
Healthcare Heretic Again
I am being the healthcare heretic again, and working to make nurse groups aware of a documentary film project. Health 3.0 is a concept that goes beyond this transactional model, we call it 2.0, of healthcare where physicians or providers don't have relationships with patients, instead they are more of a factory, cranking patients through appointments in 15 minute intervals. Check this out for an example.
This short video is being mild about it. What I wish I had time to say is that all of these cancer centers and freestanding emergency rooms popping up everywhere are only being built because the current system incentivizes it. The hospitals get paid more. They can get reimbursed at a higher rate for emergency room visits and can charge a facility fee for setting foot in a cancer center, rather than an independent oncology practice. This disincentivizes patients from visiting their oncologists for follow-up visits. The hospitals can charge up to $400 for a facility fee alone (not including the doctor's bill) just for having an appointment in a room at the cancer center.
Had I realized just how slimy this whole process was, I would never have supported the local facility as I did half a decade ago. The Big Heist is right. It is a heist, to the tune of 20% of our GDP. Not acceptable. But people need to wake up and get off their obesified butts!
Remember how when we were talking about the need for the Affordable Care Act just a decade ago, lamenting the overuse of emergency rooms because people didn't have insurance for primary care and preventive medicine? Well, now we have high deductible plans again, with rates rising, driving people out of the market, but hospital executives can clean up on higher reimbursements and facility fees. And we're not doing a better job for patients. Dumb and dumber.
Here we are again. The vicious cycle of healthcare, now has consumed independent physician practices, has doctors all working as part of the giant healthcare factory, working at the whim of their employers, being told what to do by insurance companies, and nurses are understaffed and miserable again, physician suicide rates are rising, and nurses are leaving the profession because of burnout and injuries from overwork. There's no nursing shortage, just a shortage of nurses willing to put up with the abuse.
And the people who wrote the ACA: lobbyists for the pharmaceutical industry, hospital executives, and insurance companies, have ensured they will rake in big bucks while starving the masses.
General Random Thoughts about Running
I've been running about 4 days a week on the average. About 6 or 7 miles each time.
I know!!!
It feels good to run when I feel like it and I feel refreshed afterward. My friend Emma is training for her first ultra, so doing long runs with her has gotten me out on the trails. I'm so enjoying this.
I miss my hair color. I now have a streak of reddish brown in the front of my scalp. It's a deep brown with a reddish tint, but it's my natural color. People pay a lot of money to get their hair tinted to that color. Now I have just a streak of it to contrast with my grayish white. What are you gonna do?
I refuse to dye my hair. I am getting too many thumbs up when I run, and I need that for the motivation. Plus it keeps the creepos quiet. Nobody catcalls their grandma. Much preferred this way.
Oh, and one more thing- one day I was actually able to reach my mouth with the toes on my left foot. I haven't been able to do it again, must have been a good flexibility day. I'll keep working on it until I can do it consistently. Then I will post pictures.
Yeah, that's me. I have a lot to say. I've been hiding out, buried under piles of work. I needed to breathe, so I'm indulging myself in a little creative writing and unloading today.
It's been nearly a month since I've posted here! I don't like that, I try to be consistent, but I thank my readers and followers for sticking with me.
First, feast your eyes on South Park and the Arkansas River Valley near Buena Vista. Last weekend we went up to the shed, on our property overlooking Pikes Peak and South Park.
The reason for the long break is, as usual, work. I've been extra busy because I picked up a small project on the side in order to bring in a little income and that helped. Starting a business requires constant investment and re-investment, and when there isn't anything coming in at the beginning, it depletes your reserves quickly.
But that's okay because I am doing what is important to me.
So first, a few minor orders of business. I finally, after 8 1/2 years, bought the domain alenegonebad.com so now you can find me without having to type in the extra blogspot stuff. Takes you right back here. No change.
I haven't been running much. This morning I did run for an hour and a half. It finally got hot, in the 90s, and might hit 100 by the end of the week. I guess that's what it takes to motivate me to run?
I am planning on running/walking an event over Labor Day. My friend Marissa is putting on her 12 hour fatass "There Goes the Sun" on September 3, and I'm "training". That means I am getting out and walking with a little running mixed in. Shooting for being able to stay upright and moving forward for the entire 12 hours.
The weekend before last I went running/hiking Round Mountain with my friend Emma and we encountered two unhappy snakes, one bull snake, one rattlesnake. Got a good closeup of the rattler.
You know where this is going...Orlando, of course. And I am so disgusted, but something feels like this was a turning point. It's disgusting to see the party of homophobia suddenly saying all these platitudes (because you know they are only posturing in an election year)about the LGBTQ community. Just last month they wanted birth certificates to go to the bathroom, and so on.
The gun thing is finally shifting too. #NRASTFU is what I say. The refusal of the gun lobby to have a mature, intelligent conversation about reality, and their endless excuses as if the second amendment is some sort of divine ruling from the heavens. They freaking worship guns, and the second amendment is their god.There is no reason why any group should have so much power, that they can even prevent research into gun (safety) violence as a public health issue. That is insane. And we continue to have all these shootings and gun deaths day after day. Like little boys throwing a temper tantrum. There are some girls in there, too, but the leadership is mostly men. That's part of the problem with everything in this country, and it looks like it's about to change in a big way.
And I'm sure those misogynistic pasty old white dudes explaining righteously(M-POWDERs) will be just as obstructionistic toward Hillary Clinton as they were toward Barack Obama. Except they might lose their majority after all the nonsense and putting their clown lineup on display, to show the pathetic lack of substance and outright denial of the real issues facing the people of this country. A breath of fresh air, that would be, if the whole damn Republican party imploded. And let's clearcut and burn the Democratic party too. Start over. With real people, who look like the ones in the general population, not a bunch of POWDERS! We could finally make some forward progress.
Okay, back to earth. What's real. Good news first.
A Twinkle in the Eye...
After searching for several months, we found an Australian Shepherd breeder we like in Nebraska, just 5 hours from here, and we decided to splurge and put a deposit down on two puppies, to arrive either late this year or early next. They are not even a twinkle in the eye of some Aussie dude yet, but we are expecting.
We plan to get two girls again, at least one black tri, maybe one black and one red. We are looking forward to puppy-proofing the house and some of the work we will do this summer involves checking out garage sales for things like baby gates, agility equipment and toys for the girls. We'll have to puppy-proof parts of the house and the garden.
We miss Iris and Isabelle so much, every single day. We were going to take their ashes to the place we planned, but we weren't ready. We're not ready for pups yet, but we are moving closer. I miss having my buddies around!
Life & Death
Three of my running friends have been diagnosed with cancer in the past few months. It's been tough seeing them go through their separate situations. One of them, an ultra buddy of mine, is fortunate to have had an early diagnosis, and I hope the outcome will be as good as it can be. The other two have quite advanced cancer. One is young, the other is older but not old. Also, one of my neighbors, in his 80s, also received bad news about his own advanced cancer. He's been active, walked everyday and we had many occasions to walk together and talk. He always was a friend to Iris and Isabelle. He's a fascinating person, and he is the most spiritually healthy person I know.
I'm going to miss him and my other, older friend who is being treated to manage symptoms. She has prepared herself too, and I am proud of her for taking the steps to do what no one wants to do.
Death runs in the family. It does in mine, anyway, I don't know if your relatives are immortal. I certainly wouldn't have wanted some of mine to stick around forever. I definitely don't want to. We're all going to die. Let's confront it, accept it, and plan for it, before we find out the end is closer than we expected, so we can have a good death as the end to a good life.
I wish that more people would examine their own mortality and face it, because it makes things so much less chaotic, it's better for everyone around them to know that they've thought through it, decided what they want, and are okay with it. But we have a long way to go in this country. Our collective immaturity has deemed us the world's teenager. Impulsive, without a fully developed frontal lobe. Thinking only of ourselves and not of the person next to us, or how our own actions, or lack thereof, affect them.
Clinical Trials and Boob Smashing
Speaking of life and family and cancer, I just enrolled in a clinical trial, because of my extensive family history of cancer, especially leukemias. The trial was looking for people over 50, never diagnosed with cancer, with a strong family history of it. It involves genetic testing and looking for early cancer markers. I'll find out the results, too. I realize that I might find out something I'd rather not know about or have to deal with, but knowledge is power.
I'll be getting my blood drawn next week for that. I'm excited to be a lab rat. It's so hard to get subjects for clinical trials, and they are absolutely necessary for us to advance our state of knowledge about cancer and how to treat it. So if you have the opportunity, please participate in one. You never know who, down the road, might benefit or even have their life saved by your participation.
Since we're on the subject, I decided to also splurge on a 3D mammogram when I go in next month. Breast Tomosynthesis is the name of the screening. It gives a 3D picture, actually about 11 different images from different angles. Also I heard they don't smash your boob as hard, which is good news for me, because that hurts! It's a good way to get a better image especially in people with dense breast tissue, like me. I'm dense. I'll have a report on it here, of course.
I have some other topics to touch on. Mental health is another one. And I have more, much more to say about healthcare, as you know it's one of my favorite rant topics. But I'll get to that later. I'll be back, I've missed blogging and I am starting to miss running. I wish I had more than a few days a week where I felt motivated to take running steps rather than walking. But I still feel fine when I run most of the way in a 10 mile outing, like I did today.
Scroll down and enjoy the rest of the photos from last weekend. Most are from our property but many are from the Colorado Trail and areas nearby. So great to live here, and to hang out in the shadow of the Buffalo Peaks and looking out across lower South Park at Pikes Peak.
When I have those difficult days, I just need to remember I am surrounded by so much good. Working alone, feeling like it's a forever uphill climb, and feeling like the world wants to duct tape your mouth so your voice is muffled, and they pretend they don't understand you, but really, they do, but it's just too hard for them to gather the courage to climb out of the box.
I'll keep being myself, even if I'm a lone voice (which I know I'm not) and at a distinct disadvantage because of power and resources (which I will not allow to stop me) and I'm just going to keep getting louder.
Speaking of things that need fixing, it's Nurses' Week.
Don't EVEN get me started, because that's not what I want to talk about.
What I do want to talk about is the awesome performance by John Oliver (see video below) the other night talking about the mockery and entertainmentization of science.
This is the thing that gives me fits, day in and out, as a healthcare professional. But it applies to running too!
Cancer is one of the most heavily affected areas of commerce and research when it comes to bad science. There is more misinformation than good information, and it's a uphill battle to fight it. I hate the battle terminology around cancer. I am using "battle" in the sense of beating back the onslaught of scams and pseudoscience that prey on fearful, vulnerable and desperate people.
This applies not only to healthcare but also to anything- these trends that come and go, the popularization of things like supplements or products or running shoe designs, running techniques, what an elite runner swears by so everyone follows along regardless whether it is backed by evidence or common sense, like a bacon diet or running with one eye closed.
Here's what I thought after watching John Oliver.
The problem is that the meaning and purity of science have
been diluted by a “science as entertainment” approach in the media. Since
everything in the media is based on selling-, which is attracting viewers for
advertising, they are going to use sensationalism and eye-catching
headlines.
There is no integrity in what they report. And this lack of
integrity extends to the people who are putting out press releases that reach
the wrong media outlets.
It’s one thing for knowledgeable readers who
understand the meaning of “a study”. But the lay public does not. And this has
led to the dilution of and confusion of important information, and no one knows what to believe, as
Oliver points out so perfectly- cherry picking what you do or don’t want to
believe.
And that is what is so frustrating- for health care providers and for
people who are trying to provide good information- it gets diluted and washed
out in the tide of pseudoscience.
Like the whole gluten thing. People just deciding to be
gluten-free because they heard or read somewhere that it's bad. Then a gazillion "gluten-free" products and services become available, and everyone jumps on board, whether or not they understand it. Then you get a bunch of contamination, and the people who truly need to be gluten-free (those with celiac disease), are hurt by it. And the people who don't need to be gluten-free end up enriching the coffers of those who sell the product without any demonstrated benefit to their health.
Oliver goes on to explain that repetition of a study, having enough subjects, stringent methodology,
being published in a peer-reviewed and edited journal combined with the lack of funding for research and the pressure to produce results that are provocative or will sell things, create a problem for the quality of the research that creates a body of evidence.
Then we hear about agencies making decisions based on political appointments, or ties to industry, or other means of corruption. And people are not science-literate enough to understand the difference between scams and real
science, and they only know to listen to the media entertainment version, so the most provocative-sounding, attractive, entertaining, and eye-catching content is going to catch the viewers' and customers' attention instead of what
is science.
How to solve the problem? Do we place stricter standards on
what can be told to the media? How do you stop a train with no brakes? There’s
no regulation or control over what happens to the information.
My preference would be to educate the public and increase their science literacy. But our education system
is suffering from similar problems: lack of funding, and people who don’t
understand what happens on the application, human-interactive level making the decisions. Just like in healthcare.
When it hits them inthe wallet, people do seem to understand. So perhaps showing them the kind of
mistakes they could make and how much it could cost them would help.
What we really need is critical thinking. People, whatever divine being you believe in, or not, gave you a brain, so use it. Damn it.
If you're coming here from Amy's blog, welcome! This is part two of the two part blogpost on athletes and cancer.
Know how to support someone who is diagnosed
For an athlete diagnosed with cancer, the decision to tell others is difficult. They are afraid enough for their life, not to mention losing their friends, their sport, and their social network around it.
When they tell, the lay experts come out of the woodwork like termites- suddenly everyone becomes an armchair oncology expert, especially when it comes to nutrition. Resist the urge.
Don’ts
1. Don’t tell them about alternative treatments that you’ve heard of, or that you read somewhere about a study that showed some type of special juice cured cancer. Their LIFE is at stake here. If we knew the juice cured cancer, we’d all be drinking it.
2. Don’t imply that they did something to cause their cancer. Don’t try to figure out why. You’ll come off as contemptful or judgmental, not to mention what this does to your friend with cancer who is already overwhelmed.
3. Don’t freak out, look up statistics on their type of cancer, or give them information off the Internet. Let their doctors practice medicine and do what they do best- treat cancer. It might be hard to put yourself in their shoes, but try. If you had cancer, wouldn’t you want to choose the treatment that had the most evidence for success and rely on experts who have been trained specifically in treating cancer?
4. Don’t make assumptions, no matter how well-meaning you are, that they can “beat” cancer, tell them they are a “fighter”. Some people don’t want to hear this. If they do, then great, give them the support they want. Ask them what they want.
5. If someone is being treated for cancer, don’t recommend supplements or antioxidants to them. The chemotherapy is intended to kill cells. That’s what you want to do in the case of cancer. You want oxidative stress and free radicals. Otherwise you’re counteracting the chemotherapy.
6. If they are getting chemo, don’t give them fresh fruits or vegetables, fresh flowers or plants, expose them to pets or sick kids, and avoid going to see them if you’re sick. Their immune system is going to be weak until after they recover from chemo. This is not the time to bring them kale and chia smoothies unless their cancer doctors say it’s okay.
Dos
1. Go here and click on the body parts to get some basic tips on supporting someone with cancer.
2. If you’re finding yourself so freaked out by your friend who has cancer, examine your own reasons for your freak out. Do you have some of your own issues that are unresolved? Maybe this is a chance for you to get some counseling for yourself so you can give better support to the person with cancer.
3. Remember, it’s not about you. THEY have cancer, not you. You have your health. Use the abundant energy that you were blessed with to help them. Do some footwork, offer to do laundry, errands, things they don’t have the energy for. Walk the dog, clean the yard, shovel snow. Use some of your own precious training time to do something for them. That shows you care.
If you are diagnosed- it doesn’t automatically mean the end of your athletic career.
1. First, you’re going to panic. That’s normal. But I’m going to tell you this, as hard as it is, as an athlete, you need to take your lifestyle into consideration when talking with your doctors.
2. Even though your first impulse might be: “Cut it out of me and get it over with!”, what you do and how you approach surgery and treatment decisions can make a big impact on your ability to recover and resume your sport, and your comfort in doing so. Take your time, it will be worth it in the long run.
3. Don’t be pressured into choosing any one method of treatment. Make sure you ask the doctor how it will impact participation in your sport, and at the level you hope to achieve. Get a second opinion if you’re not convinced it’s right for you. If you can find a doctor who is an athlete, that’s even better.
4. Cancer is very rarely an immediate life-threatening emergency. You should take the time to discuss any decisions with your oncologists, breast surgeons, urologist, plastic surgeons, radiation oncologist, or anyone else in your care. For example: certain reconstruction methods may be better for some athletes than others. If you use your upper body a lot in your sport, make sure your doctor understands how important your sport is to you.
5. The way they approach radiation treatment, which chemotherapy they use, the type of surgery, and any reconstruction can make an impact on your ability to return to and recover your ability to do your sport. Prostate cancer treatments can also impact your comfort in returning to running and other activities.
6. Depending on what type of cancer it is, you might need some combination of surgery, chemotherapy, radiation, or other treatments. It’s not easy, it’s not fun, and it takes time. Athletes are known for not giving up, for having endurance, and believing in themselves. You can use these mental skills in coping with cancer treatment and recovery, plus the determination to come back.
7. Athletes also start out in better health than most patients giving them an edge. They are also more likely to be able to continue some form of exercise during treatment, which helps them throughout the process and in recovering faster.
It’s not over when it’s over, so don’t forget support afterwards
1. After cancer treatment it can take a lot of time and effort to recover. While athletes have an advantage, there is still a lot of physical, emotional, and even social recovery for athletes with cancer.
2. After treatment they have to regain their strength and fitness. They might be anemic, have lost muscle mass, or range of motion. They can feel abandoned by their workout buddies. Remember them. Don’t let your own athletic goals get in the way of being a friend to them. Make time even if it’s not in a workout, or offer to do an easy workout with them.
3. Don’t expect them to jump right back into racing and training. It can take a while, but often, they can come back, and sometimes, stronger than ever.
Cancer Harbors is an online service that is designed for people after cancer treatment, as a guide to recovering. It has special material and support for athletes with cancer, to help them physically and psychologically recover their strength and confidence. Emotional and social support, with coaching and guidance. It is for anyone, including non-athletes, who need help in the anxiety-filled year after they leave their cancer doctors behind. It’s a thoughtful way to support a friend who is going through cancer treatment, to give them the edge in recovering and getting back to the sport they love. It’s also a great way to learn more about cancer in general. To find out how to give a gift of Cancer Harbors, visit here.
Athletes are great examples to others. We take care of our health better than most, we get plenty of physical activity, don’t gain unhealthy amounts of weight, tend to balance our lives, and have more positive attitudes.
We go outdoors, have more energy, and avoid unhealthy habits like sitting in front of the TV eating garbage. We set goals and achieve them, see the country and the world, and know how to have a good time.
When I’m not running, I’m an oncology nurse and cancer recovery coach. If I had a dollar for every time I’ve heard from a patient diagnosed with cancer, “I don’t understand how I got cancer. I ate organic foods, had a perfect diet, exercised, never smoked, avoided toxins, managed my stress...why did this happen to me?”… all those dollars would do wonders for my race bucket list.
The truth is, based on our current state of scientific understanding, we cannot absolutely prevent most cancers. Certainly there is a ton of evidence that exercise and healthy living can prevent chronic disease and make you more likely to live a healthier life and be more independent into old age.
I’m not saying it’s futile, or you should give up, sit on the couch and eat trash out of bag until you roll onto the floor in a sugar coma. I do want you to understand that being an athlete will not absolutely protect you.
We don’t do a very good job of educating the public about a disease that is likely to strike somewhere between one-third and one-half of us during our lifetimes. There’s a lot of misinformation, and that can lead to completely over-the-top, irrational fear.
What cancer is
Cancer is a wide range of diseases with a common characteristic: something goes wrong in the way the cells regulate growth, and results in uncontrolled cell growth. It happens at the molecular level, in the cell’s genetic material.
Cancer is not one disease, so there is no such thing as a single cure for cancer.
There are hundreds of different varieties of cancer, they all behave differently. That’s why they are all treated differently. What one person gets for cancer treatment can be completely different than what another person gets for cancer, even if their cancers started in the same part of the body.
Many people still equate cancer with death, and our society is in extreme denial when it comes to facing our mortality. Athletes often trick themselves into thinking their sport will give them immunity. Sorry to break the news, but your running shoes won’t protect you.
But the good news is, athletes are gifted with qualities that will often help them get through treatment and recover in a lot better shape than non-athletes. Determination, endurance, positive attitude, willingness to tolerate discomfort, and overall physical fitness are key qualities in achieving good outcomes during and after cancer treatment.
Fear and Judgment
Anyone can develop cancer, and it doesn’t mean you did something wrong. From what we know now, evidence seems to show that other than hereditary risk (mutations passed down in your family), and certain exposures and behaviors we know that are associated with cancer (like asbestos, smoking), it’s unpredictable. The older you get, the more likely it is that you will have it, and you might not even know it. Sometimes you might not even have to do anything about it and it won’t kill you.
Cancer does kill people, but not nearly as often as it used to. Sometimes it’s bad luck- some people’s cancers are undetectable until a very late stage. Don’t assume it’s the person’s fault for not getting screened. It’s important not to judge.
No one is saying you shouldn’t fear something that is potentially life-threatening. But a little knowledge goes a long way- in terms of early detection, managing anxiety, and coping in case it does happen to you or someone you care about.
Cancer concepts and misconceptions
Prevention. People confuse screening and early detection efforts with prevention. You really can’t completely prevent most cancers. Mammograms, pap smears, and colonoscopies don’t prevent cancer. They screen for it in hopes that it will be detected early enough to be treatable. By taking care of yourself, eating right and exercising, what you are really doing is reducing the risk, or likelihood, that you will develop cancer. Risk is based on statistics in the general population.
Early detection and screening. Squeamish is no excuse. Suck it up and get a colonoscopy. Don’t be so vain…believe me, they’ve seen plenty of butts, yours is no big deal. I promise you they won’t remember what yours looked like, even if you run into your doctor on the street.
Know your family history. If anyone in your family has cancer, let your doctor know. This is reason enough to make sure you do your screenings. If several people in your family have cancer, ask your doctor about genetic counseling. Really. It doesn’t hurt one bit and it might save your life or someone else’s in your family. (Counseling first, never jump into testing)
Learn about it- from the right sources. The National Cancer Institute (NCI) is a good place to start http://cancer.gov Don’t ask Dr. Google.
Use caution when reading online or ads. Here’s a great place to visit if you have questions about a study or claim you read: http://healthnewsreview.org Anything that says, “a study” showed… One study is not a body of evidence. Studies need to be repeated, on large numbers of people, put through rigorous trials on humans under strict conditions, study conditions and findings examined for bias by experts, and published in peer-reviewed scientific journals.
After a pathetic week with the snow and cold, I finally got out and ran an easy five mile run with Emma on Sunday. We did Bingham Hill, which gave it a little challenge. I didn't feel bad at all running up the steep side and we talked the whole way.
Yesterday I got a good ten miles in on my feet, about seven of those were running. I'm running with Wheaties Boy tonight. It's warm again but windy today. There were whitecaps on the lake when I went out to do a therapeutic walk late this morning.
Now I'm tapping my feet at the desk. It's the calm before the storm. Tomorrow I meet with the marketing firm to plan the last steps before we launch my new service, Cancer Harbors. I'm nervous with anticipation. I don't expect miracles to happen and certainly not overnight success. It's going to be a process, much like an ultra, with ups and downs, good and bad patches, without a finish line on the horizon.
I'm troubled by something I learned yesterday, about one of the runners I've admired for many years, he's in his 80s, and just got some bad medical news. Cancer is something I am around all the time. I hate what this disease does to people, and I like that I am able to intervene in some ways and make things somewhat smoother, even if I can't fix any of it. There's been enough cancer in my family, and around me, in addition to my work and my clients, that it is something I've become used to, but not in a way of losing empathy or numbness.
I do know that burnout is something I will have to avoid, it is always a possibility when you're in healthcare and working with people who have intense needs. There's a certain distance you become able to maintain, but not enough that you can't emotionally grasp what they are experiencing. I don't know how to describe it. The ability to do that must be somewhat of a necessity if you're going to work in this field. You also need to be able to give something back to yourself, to refill your own tank.
Right now in addition to my dad's recent treatment and tentative remission, and the fact that a young person close to our family is in a hospital being prepped for a second bone marrow transplant after a leukemia relapse, and doing all I can to support my stepmom and others through coping with my dad's health problems, and my daily work which involves caring for people going through various phases of treatment or after treatment, it seems like I've been going along doing pretty well.
And then this news yesterday hit me. I was trying to figure out why it bothered me so much. He's lived a long active healthy and fun life. He expresses gratitude for all he's been able to do and experience in his time. It makes me mad that he has to deal with this, but then I know that cancer bully doesn't care, it picks on anyone and for no particular reason.
Those who think that by being a runner, eating healthy food and living a low stress lifestyle they can avoid cancer are just fooling themselves. There are other reasons to take care of yourself, of course, but if you're going to develop cancer, you're going to. At least until the day when we figure out whatever goes on inside our bodies molecularly and genetically to get cancer started and stop it.
Maybe it's because lately I wonder about my own existence, I've been working so hard on Cancer Harbors that I have foregone running, ultras, adventures, traveling, and having the money to do it. I've always felt that if I died tomorrow I would not regret it, I feel like I have packed a lot of living and fun into 52 years. If I'm taking up space on the planet, I need to be contributing something, and by coloring outside the lines and being disruptive and vocal, not following the beaten path, I am.
Recently I've been missing something, and maybe it is the accumulation of the caregiving role combined with the lack of spiritual outlet that running ultradistances gives me. Maybe it's working alone, without coworkers or people to talk to for most of the day, not even having the counsel of Iris and Isabelle anymore, in all of their superior wisdom. I don't know what independent health care providers do to take care of themselves, to cope with the emotional burden of the work they do. I have probably two dozen people I could reach out to, but they're all too far away for face-to-face conversation, in the flesh.
There's also the nagging thought that rarely surfaces but is back there somewhere, with my crazy family history of leukemia and other cancers, and who knows if they are hereditary or just random, that something could be waiting for me up ahead, and I want to be able to face it if I need to, with no regrets. So maybe what I really need to do is start running long again, just getting out on the trails around here more often, being outside and experiencing as much as I can while my resources are limited. Being outdoors always has been my solace. I need to find a way to challenge myself regularly again.
Climbing fences and trees with a corncob in your mouth adds an element of challenge.
Yesterday my friend Marissa saved the day for me, she is putting on another run like the Equinox run we did last spring in Arvada. This time it will be over Labor Day weekend. It will be an early fall equinox event, called "There Goes The Sun". That gives me a little over five months to get ready to spend 12 hours on my feet. I needed that much more than I realized. I'm going.
We are now three weeks past solstice and I already notice the slight difference in the evening light, past 5 pm. Looking out the back window I see this view.
I got 55 miles on my feet this past week. Three hours of which was running. Progress. It's been so cold, that's been the hardest thing to overcome.
I'm buried in editing work with my startup but enjoying it. I love it when I get the edits back from my team. They have so many great insights, and my blind spot is covered. I say blind spot because, not being a cancer survivor myself, there are many personal experiences that I don't bring to the work I do. I can listen and empathize to the best of my ability, but I will always be missing a piece. Thankfully I am not a cancer survivor. But I am aware of the potential for anyone, including myself, to become one.
Tomorrow I am being interviewed for a podcast by one of the longtime readers of this blog. I will share the link and info as soon as it's available. Sounds like fun. Thanks, Amy, for the opportunity to plog (podcast-blog).
Another busy week ahead, and every step gets me closer.
It's still Sunday. For now, back to the backyard gazing.
I'm home, looking at the cool fall colors, after a week in Arizona. I managed to catch a nasty cold, probably on the flight down there, so I'm sniffling, hacking and snorting my way through the day, surrounded by piles of tissue and tea cups.
This blogpost isn't much about running, although I'm proud to announce that I have now been consistent with running most days of the week for the past 6 weeks. This coming week I'm sure I will cut back in order to get over this crud, but I feel like I've finally reached a point where the running is habitual again. I was up to nearly an hour and a half of running 4 or 5 days a week with some 2 hour runs thrown in there. Still no interest in ending my current hiatus from doing any running events, but we'll see how that goes...
I went down to Scottsdale to visit my dad and stepmom, and speak at an event in Tucson. Wednesday October 21 was BRA Day, Breast Reconstruction Awareness Day. It's intended to educate women about a full range of options for breast reconstruction following mastectomy.
Most women don't find out that they have a range of procedures to choose from that include using their own tissue to reconstruct breasts after a mastectomy, often they rush into immediate reconstruction with expanders and then implants, without being informed about all the possibilities because of microsurgical techniques that allow the patient's own fat and skin to be harvested and a blood supply established to create a more natural appearing breast.
More about that in a few... I flew down and the weather was un-Arizona-like. It rained like hell two nights in a row, a deluge of rain and hail in different parts of the valley. I ran early Monday morning with my running friend Chris and another friend of his on the canal, before the sun came up. It felt more Florida than Arizona with the humidity.
I hung out with my dad and stepmom, my dad is doing somewhat better and it appears that chemo is working. We won't go into the details of the possibility of relapse, which is fairly high, but he's feeling better and things are going well overall. Things are looking up now. It's great to see him getting his old energy back. Not quite himself, but he's improved dramatically.
I met with a social media expert while I was down there and will be using his services as I move forward with my business endeavors. I finished a big chunk of work before I left and now I'm switching gears from developing content to marketing.
Then it was time to go to Tucson for BRA Day. I met Terri online, now I can't even remember the exact circumstances of our connection but we started corresponding last summer and Terri wanted to make a BRA Day event happen in Tucson and she perservered along with the help of some nurses and social workers in Tucson who convinced the powers-that-be that it would be a worthwhile event to host.
Terri assembled a panel of speakers and the backing of local businesses to support the event and it came together despite many hiccups and speedbumps along the way. I agreed to help in any way I could despite being out of town.
We set it all up in the lobby of the U of A Cancer Center, which looks and feels remarkably similar to the Cancer Center we have here in Fort Collins. It was dumping rain as we carried all the supplies and donated gifts from Terri's car to the lobby of the Cancer Center.
We didn't have a room, podium, or formal presentation set-up, just some lobby furniture and a screen, and a microphone. But we did it, and it worked. One of the nursing staff members bought the refreshments herself. Local businesses donated prizes. Terri's son recorded all he could on the Periscope app on my phone. Of course my phone battery died even with the extra battery pack, so we didn't get to record most of the speakers. We have a learning curve with Periscope, which has some glitches itself.
I spoke on "Reconstructing Well-Being", about some of the overall wellness, prehabilitation and lifelong habits to adopt regardless of where a person might be with regards to cancer treatment and reconstruction decisions. Terri talked about her experience as a patient, there were nurses, social workers, tattoo artists, a plastic surgeon's PA and a breast surgeon there. Topics ranged from sexuality to surgical options to cosmetic appearance to more personal experiences from a patient who is also a nurse.
We had no idea how many people might show up for the event but we hoped it would be at least a couple of dozen. As it turned out we had a good 40-50 people in attendance. Afterwards we cleaned up and moved the furniture back to where it was, and it was time to party!
Afterwards four of us, the three nurses and Terri, went out to a Mexican restaurant for food and margaritas and got serenaded by a mariachi band, and decompressed. It is so amazing how every health system, nurses, cancer centers, and administration work the same everywhere.
This event only happened because of the work of Terri, a patient advocate, and her backing by a nurse and social worker who wanted to do something needed, useful, important, and meaningful for patients. It wouldn't have happened otherwise.
This is what it takes, people need to speak up and be vocal. Advocating for yourself as a patient, and for others who face similar experiences, as Terri does, and health care workers advocating for patients' needs and filling the gaps in information and care, all of that only happens at the grassroots level. With the corporatization of health care, the people up high are running a business. To use an overused term, there is a disconnect yes- I hate cliches too - between the business of health care and the service of health care. Service is what it needs to be about, otherwise we won't be serving anyone's best interest except the people who stand to profit.
The only way to make things work for the people who need the services is to do the footwork, be vocal, don't back down, and persist. It takes effort to make worthwhile things happen, and if at first it doesn't fit, make it fit.
Just like you have to move and make some effort to improve your health, changing the way the system works will take real effort toward movement. Sedentary habits won't create change.
