Friday, October 17, 2014

Travel -

While I was dealing with cancer healing, Scott and I decided as soon as I was healthy we would travel. And we have - not necessarily far away and exotic places, but hey - any travel is better than no travel! 

We've been to Northern California, Southern Oregon, Southeastern Idaho, Southern Utah, Montana, Wyoming, Hawaii . . . 

This week we've been road-tripping from our place through Ashton, ID, through Yellowstone Park, up to Gardiner, MT, to Bozeman, Three Forks, and over to Billings, MT, to visit my sister, Vicki, and her family. Scott served his LDS Mission here 46 years ago, and has not been back in this area. 

It's a beautiful part of the world. In fact, wherever we've been, we've found beauty. We don't travel freeways, we don't dine at chains, we don't sleep in big box motels. We love small towns, local people, getting lost and getting found. 

My sister, Vicki, she rocks. She's a nurse, and she's the nursing director over women's and children's services at St. Vincent Healthcare here in Billings. She and her husband, Scott, have 1 son, 3 daughters, and they are just the most loving, energetic, gentle people. 

So I love my sister; I haven't seen her in 18 months, and this is going to be a beautiful few days to spend with them all. 

I saw this sign in West Yellowstone. I love the idea, the concept; wondering how I can incorporate this into my tiny piece of woods: 

Welcome
To Our Place
In the Woods
Take Nothing
But Pictures
Leave Nothing
But Footprints
Kill Nothing
But Time



Sunday, October 12, 2014

Finding a New Normal -

I am so here right now - and I don't know what to do.
And. I'm. So. Tired. Of. This. Place. And. These. Concerns.



Finding the Way Back to Normal After Breast Cancer: A Lesson in Invisible Fences by Carol Bysiek

PostedUpdated: 
LOST DOG


For cancer survivors, finding the new normal is often job number one following a successful treatment. I know firsthand how hard it can be to reassemble the pieces following a long and exhausting treatment. While the good news for many is survival, there are often new concerns and challenges. And just as unique as is each survivor, so too will be the way in which (and depth to which) cancer touched their life. But one thing is for sure, it touched something, and getting back to normal takes time, patience, effort, and probably a good bit of help.
When I was looking for a way to explain how I felt following treatment -- the disorienting feeling, the sudden unfamiliarity of so many things in my life -- I used the analogy of an invisible fence. It really helped me and others to better understand and frame what going on. Simply put, I felt (I could only imagine) like a dog whose trusty, familiar invisible fence had suddenly been moved. The new boundaries were startling, jarring, even shocking. Much like for Fido, one cannot see an invisible fence, one has to live it, experience it, bump into it a few (or a bunch) of times. It used to end over there, but now I can't get past here. It used to have one shape, now it has another. I used to do, think, feel one way, and now those things either don't work or no longer feel right. But the new perimeters do not reveal themselves like a runway in the dark, all lit up, and they can't be found with the ease of a Google search. No, the process of recovery, and rediscovery, is one of patience, honest assessment, acceptance and a lot of self-care (and self-love).
We all have invisible fences surrounding us, even if we don't know it. Many of them since before you were born. These fences, for better or for worse, are the perimeters that surround our lives, make things familiar, predictable, and within our control. They all shape our sense of what is right, familiar, "normal," and expected. They make up the what should be. They needn't fence us in, so to speak, but at any given moment, they define our perimeters and what makes up our world.
At the highest level, our fences are shaped and put in place by when, where and to whom we are born -- by our generation, our religion, and our ethnic background, as well as by societal expectations, family, friends and community.
On a more personal level, we all have physical, mental and emotional fences, perimeters that we have learned to live by and these are the ones I want to focus on.
Physical perimeters: We know our limits, what we are capable of, what we can or cannot do well.
Emotional perimeters: We know how we feel, how we react to different triggers or familiar situations. We know our likes, our dislikes, preferences, motivations, dreams, goals, and desires. We know ourselves... or at least we think we do.

Mental perimeters: We are trained from childhood in school to think, and to reason. We know if we excel at math, language, science, business or philosophy. We know how our minds work on a daily basis. We take for granted the countless things our brain does without our conscious involvement -- the thousands of learned responses that are stored, and fired off when predictable patterns are detected, from making a pot of coffee half asleep to handling stressful situations.
All of these things come together to shape how we live, what we believe to be true, what we expect, what we know we are capable of and what we think life should be. They provide a sense of safety and security, and allow us to trust that tomorrow will follow today and everything in our lives will be in the same place when we wake up.
If you are lucky, you are the engineer of your fence. You expand it or contract it as things change, slowly. Learn something new? It expands in one direction. Get an injury, and your abilities contract in another direction. The result is a new shape. If this happens at a slow enough pace, it is not overly stressful. You take it in one move at a time.
But what happens in a major life trauma such as the loss of a job, the end of a marriage, a serious illness, a disability, or the loss of a loved one is a massive shifting of the fence. The changes are so big and/or come so fast such that all that was familiar and safe and predictable, the foundation that all else was built upon, is shaken, or perhaps even broken.
In my wellness practice (see more at lilypadwellness.com), I have spoken with many survivors of breast cancer. A theme that is consistent no matter what stage or course of treatment they had (and one that needs more attention and resources than it currently receives) is the post-treatment phase of recovery, or "finding the new normal." There is good reason this phrase is repeated so often by this group, and frankly by anyone who has endured a trauma or loss. While our loved ones might want to see us recover and resume our lives as close to how they were before as possible (for good and loving reasons), the truth may be that parts of us will simply never be the same. The perimeters have moved. Finding the fence through a process of trial and error (nice way of saying bumping into it and messing up, a lot) and establishing new perimeters of body, mind and spirit, is where the survivor must begin the journey back to feeling whole, vibrant and ready to thrive again.

Tuesday, October 7, 2014

Take a Deep Breath -

Two years ago this week (10/11/12) I began chemotherapy. In many ways it seems like just yesterday - and in many ways it was in a past life. And since I'm a believer in reincarnation - even in my short 55 years I've lived many lives, I'm going with these two trajectories - because I have certainly evolved from two years ago, and I am not the same person I was yesterday.

So here's the deal - if I believe in reincarnation, then I must believe in time-travel. And here's what I want to do - I want to take the me of today back in time to visit the me of two years ago. This is what I am going to say to her:

Cancer. Shit. Damn. Sunny beaches. I am so sorry you have this diagnosis - so very, very sorry. Life will not be easy, in fact, life as you have known it will no longer exist, ever, ever again. I'm afraid you're pretty unprepared for this journey, but I don't know how you could be prepared. Kind of like being pregnant for the first time and giving birth, although you probably know many more people who have given birth than who have had cancer. So - go with the bliss you do understand - puking, bald, susceptible to all types of germs, achey body. But let me tell you - cancer and its treatment is horrible. I've been honest this entire blog, and I won't stop now. There is so much more to cancer than just losing your hair. So honey, hold onto yourself, and hang on tight to anyone, because this ride is not going to be pretty. Be awake and aware, live in the moment. Be afraid, but don't give up hope. Your support system is amazing, and you are more than blessed to be surrounded by people who love you. This journey is for them as well - cancer is not just for the person burdened with it, the ripple effects are broad-reaching.

Go forward with Grace and Peace my friend, peace.


PS - you are rockin' that pink hair! And look at you takin' and postin' a selfie! You are doing good things, being brave, stepping out, and that hair - something you would have never even entertained two years ago. Way to reach out!





Monday, September 29, 2014

On Another Note -

I've been putting together a "Diversity" program for Intermountain Healthcare's Urban South Region, meaning UVRMC, AmFork, and Orem hospitals. This has been a blast - I know how to assemble this program, run a diversity team, and write, organize, display, produce folk ways!

So as with any research, once the topic is in my mind, I become aware of related material - kind of like having breast cancer and meeting so many other people, reading so much material, being aware of breast cancer every where I turn.

And this is the latest tidbit on Diversity and Cultural Awareness. A perfect example of cultural differences and social mores. Enjoy!


Friday, September 19, 2014

18 Months Post and Chemo Brain -

Well, happy day here. Not that I was expecting anything different than what I received, but I tell you, the anniversary anxiety, which comes every 3 months for the first 2 years, is tough. I look at these doctors' visits as markers of moving past and beyond breast cancer, but they are also reminders of where I was, and quite frankly, where I could be, if any indicators were there.

So - great blood pressure, great weight, mammogram was clear, and I'm just waiting to hear about blood tests - red and white blood cell counts. But I don't expect anything other than "all is well."

Today, prior to my doctor's appointment (visited with my chemo oncologist, Dr. Rich) I listened to a webinar on Chemo-brain. I have been blessed with this lovely gift, and I have worked hard at being aware and on top of this, but the symptoms and signs are always evident.

These include:
  • Brain fog - almost like a dust cloud is over my head, causing a darkening of my thoughts. Not dark as in depression, but dark as in not being able to see clearly.
  • Wart on my tongue - yes, you heard me correctly. It's not even like the word is on the tip of my tongue, but the word is covered by something, and I can't uncover that to get to the word. It's as if I can't even find the file in my brain with the word I need to access.
  • Short-term memory loss - not long-term, but forgetting to pay a bill, forgetting where I parked, forgetting an appointment. And it's more than forgetting - it's not even computing.
  • Inability to multi-task - I'm not talking doing 19 things at once, but simply putting the clothes into the wash, working on a writing project, while dinner is cooking. That's the type of multi-tasking that has been tough. I have to systematically order out my tasks, and then focus, and walk through each one, individually.
  • Overwhelmed - too much stimulus can cause headaches, increase brain fog, increase anxiety and stress. Feelings of being overwhelmed can be simply too many emails, too many phone calls, too many people in the room, and too little space to process.
  • Lack of Focus - many women report feeling as if they are ADHD. I have a tough time staying focused, particularly during meetings or in group settings. As well, occasionally I have a difficult time finishing something I start - leaving many projects half-finished.
So - are there solutions? Yes! There is hope! About 75% of breast cancer chemo patients have short-term chemo brain. This is typically evident post-treatment, because face it, we are too busy surviving to really address any of the changes that are happening to our bodies. Most women with chemo brain will have some affects through about 6-9 months post-treatment, then they issues will slide away, and the women will be just fine, with no residual affects. About 35% of those 75% will have chemo brain that lingers up to 5 years post-treatment, with 20% of cancer survivors having long-term issues. However - there are things that all women who are going through breast cancer treatment - chemo and radiation, to regain their real, rather than chemo, brain.

These include:
  • Patience - If you are experiencing long-term memory loss or your chemo brain lingers or seems to be getting worse, see your doctor and ask for a neuro-eval. This is most likely not chemo-brain. If you are 8 months post-treatment, you should see an increase of brain function. However - life with cancer is about changes, and changes in attitude and dealing with memory issues is probably necessary. Laugh off memory loss mistakes (I teach 3 writing classes at my university, and when I forget a word or an assignment or to whom I was just speaking, I just have to laugh). Smile when you forget to pay a bill, apologize, blame your cancer (legit), and then ask for fees to be waived.
  • Simplify - write appointment dates down so you don't forget them. Organize your world - a place for everything, everything in its place; use a calendar, reduce distractions. Make lists - I have a small tablet I carry with me, and I have an app on my phone for lists. I also e-mail myself things I need to remember to do electronically.  
  • Sleep - the body heals when it sleeps. A dark bedroom, no artificial light (computer), and a cooler rather than warm room. Women need about 8-9 hours of sleep at night. Naps are good, but deep REM sleep is important.
  • Exercise - Get those endorphins pumping, get your body moving, and get the blood flowing. All of this purges the body of toxins while also strengthening muscles - including the heart and brain. Obesity exacerbates brain deficits. While exercise stimulates the body, remembering the exercises, breathing, thinking about routines and posture, all help the brain. Consider doing word or number puzzles, reading new material, or writing as ways of exercising your brain. 
  • Nutrition - Eat right! Stay away from trans-fatty anything (hydrogenated oil), and highly processed foods should be avoided. Interestingly - most chemo offices do not offer healthy snacks, rather they offer quick carb highly processed trans-fat munchies. Perhaps dealing with chemo brain is getting your oncologist to offer healthy alternatives. Protein heals, fruits and vegetables give quick energy and are filled with fiber, and eating simple is the key to your brain and body healing.
  • Vitamin D - natural sunlight is a gift we all should recognize. D heals chemo gray skin, helps build strong bones (chemo and radiation are not kind to our bones), helps heal the immune system, and decreases the chances for heart disease. Vitamin D and its accompanying sunlight also help with sleep.
  • Cytocines - read about them! 
  • Be kind to yourself - Recognize when you are having a chemo-brain moment and determine what sources are contributing to it. We can be our worst enemies (next to cancer), and really, we just have to put one foot in front of the other some days, and be grateful we can do this.
Lastly - if you, or someone you love (me!!!) has had breast cancer treatments, listen to this podcast about chemo brain. It will rock your world.


I absolutely adore this picture of Scott and me. He gives me the strength to be me. 
He is my rock, my pillar of authenticity. This guy's love never waivers. This is us. 





Friday, September 12, 2014

On The Air!

I had the privilege and honor of being on "The Apple Seed," a show on KBYU. My friend, Sam Payne, interviewed me about my role as a chaplain. I hope I did the role, and the calling, justice. 


Today's episode will also be available in their audio archive (www.byuradio.org/appleseed​) later this afternoon. I start at 14:00. 


Tuesday, September 9, 2014

Relief -

There's something about red rock mountains, sand under my toes, and running water, that does my soul good. Zion, and its surrounding communities feed me and fill me. Spending time there is healing and restful. It is so nice to unplug and focus on the here and now. Practicing mindfulness - living in the moment, is so easy when surrounded by beauty.

We visit often, considering Zion, Springdale, our home-away-from-home. We even have our favorite place to stay - Canyon Ranch - where we can cook in our little kitchen, sit on the grass and bird and people watch, visit with Mark and Karen, the managers, or just chill. We usually take our bikes with us, and we don't get in the car the entire time we're there - walking or biking are our favorite modes of transportation.

We try to do something new every time we visit, and even in this small area, we are able to do this, going home with a list for the next time. This time we were able to tour the "backside" of Zion - the northwest area, outside of the typical Zion bus tour. Absolutely stunning - left me wanting -

Everyone needs a place of respite, a Zion, whether it's a bedroom with a lock on the door, a favorite coffee shop, a backyard, or a place in the mountains, by water, or in the desert.

I am blessed that my Zion is so nearby. I am a better person when I've had some time to breathe - particularly breathing in clear mountain air. Life comes back together, my balloon is deflated (that's good), and I can continue on with my life, being me, being whole.