Saturday, November 22, 2014

life begins at the end of your comfort zone

I've been uncomfortable in this post-cancer comfort zone for the past 15 months. A year ago July, right after getting my left arm in a lovely pink wrist to shoulder cast, The still small voice told me, "The life you have been leading no longer suits you." So I've been trying to stay as far away from that life as possible. However, that's where my interests lie, that's where I'm comfortable, and that is where I've been for the past 8 years - teach, write, chaplain, volunteer, church, parent . . . And yet these places are no longer providing me with what I need - a challenge, stability, excitement, comfort. And though these words are oxymoron's, they are what I've been quietly searching for, waiting for - for my life to begin - to be uncomfortable in the search for a different kind of comfort.

I have found portions of this - in a few places, but consolidating these pieces under one umbrella has been tough. One thing I'm trying not to do is lead a disjointed life - where I'm wearing too many hats, doing too many things, while still being able to be independent, work from home, write, teach, care for others. A tall order, particularly because I can no longer multi-task, have a scattered "focus," or carry too many identities - anxiety and disjointedness take over, and I fall and fail at all.

So while I'm waiting, and wondering, and scrambling, and searching, and being, I've put the word out, sent a prayer to the heavens, stayed tuned in to the pulse of my interests and stayed published, presented, certified, active in the various professional communities where my interests lie.

I've also wondered what to do with this blog. I'm ready to move past cancer, but I'm don't want to put this blog and my writing away - I like creating, I like writing, I like this electronic journal!

And pleas were answered this month - November, the month of gratitude, has been the month for me to make some changes, to move forward - in goodness and in gratitude.

More to come - but I'm in my lane, and as anxious as I am for this new opportunity, I need the challenge and the comfort I'm finding here - at the end of my comfort zone -


Macks Inn, Island Park, Oct. 2014



Sunday, November 16, 2014

Cancer Culture - Again

On Friday and Saturday I had the opportunity to spend time with some of my favorite people, the folklorists of Utah. Many have been my teachers, my mentors, my co-students, my colleagues, and all are my friends. I spoke with one of my professors and his wife - they have a son who has colorectal cancer, has had for quite some time, and with a weekly or monthly dose of chemo, he is living. He is taking advantage of his long cancer journey to educate the medical world about cancer - and how to answer sensitive questions that may or may not be asked by those going through cancer. Face it - until you have cancer and have been going through treatments, you don't even know what to ask. This man is providing answers for those who will come after him. I like that - although he is not healthy, he can still provide, his expertise, along with his education, will benefit others.

And so I have thought about what I wrote, way last January, 2013, about cancer culture, and I'm reprinting a edited version of 3 posts, below. Enjoy!

Cancer Culture - The ways of the folk are divided into three categories: make (material), say (cultural), do (customary). In every day culture or folk ways, these could be:
  •  Make - Sunday dinner - the same meal every Sunday, which then becomes customary as well.
  • Say - How did you sleep? Don't be late for school? How was your day? Good grief it's cold, Hi, Hey, Howdy, Whassup - these are things we say on a regular basis, words that are expected to come from us.
  • Do - make our bed a particular way, wear a specific clothing item for a specific day/time/event. Pray over the food, don't speak with food in our mouths. Check Facebook first thing when we get to work. And these happen on a regular basis.

When we make, say, do these "all the time" they become customs or habits, and when we involve others in our doing, they become traditions.

This happens also with special events:
  • Make - fruit cake for Christmas, colored eggs for Easter, corned beef and cabbage for St. Patrick's Day. Or - Christmas decorations, birthday cakes, reservations at the restaurant we ate at on our first date (which becomes a "do").
  • Say - Happy New Year, Happy Singles Awareness Day, Another Year Older, sing - Happy birthday to you, Happy birthday to you . . .
  • Do - Go to the restaurant we went to on our first date every year (reflected in the "make"), go to Island Park for our family reunion every other year, give gifts for birthdays, fold our arms in worship service. 
And now to Cancer Culture:
I'm not sure if I can make this into an itemized list, so let me describe what I've experienced -
  • Say - there are words that are only understood by those experiencing cancer and cancer treatments. "I'm a stage 1, grade 3, triple negative." "Oh, that's a cute hat." With the reply, "It's not there just for beauty." And the reply, "I'm a survivor; I . . . " Or, IV therapy, hydration, dex, let me know, terminal, metastasized, every 3 weeks, there goes a nail, no hair - anywhere; radiation tattoo, port, chemo sick.
And words cancer folks don't use - victim, patient, it could be worse, cheer up - which then would define who the insiders are and who the outsiders are - by the words, phrases they use. 
  •  Do - Clothing - v-neck t-shirts, button down the front shirts, stretchy pants, warm socks, layers, hats with liners, ill-fitting wigs. I have clothes I haven't worn this fall/winter because I don't have hats/scarves that match them! I have a pair of Dansko shoes I have not worn, because I haven't gone anyplace fancy enough to wear them! I know which yarn is the best yarn for hats, how to wash hats, how to tie scarves, how cold the back of my neck gets and how to wear a scarf and a hat together, and the beauty of wearing a hat to bed! I dress up for chemo and IV therapy - a lady last week told me, "You are the best dressed of all of Dr. Rich's patients. I know, I've been watching." Ha! What an award to win - something that doesn't matter to the outsider's world, but for insider's, it's "important"! 
    • And blankets - which belong in the make and do categories - the chemo room is cool, chemotherapy itself is not warm, and most chemo patients are cold from their situations. So a blanket - this season it's a "minky," (flannel, fleece) are so important. If you bring your own blanket, it's usually a gift - which is another "do," someone "made" and gifted you with that blanket. I've written about blankets in another post. As you can see from these pictures, there are fleece scarves and knitted or crocheted caps. These are gifts to the chemo unit - things that people make and then give/do.
  • Make - We make traditions! Some of those in the cancer world include:
    • The biggest traditions and initiation rites are that of giving and receiving - cancer patients, survivors, and their loved ones are gracious with tips for making it through this journey. They can give advice, always preceded and ending with a hug. Their advice is a gift. Those without cancer experience - no advice please.The patient moves from beginner to experienced once their first treatment is finished. Now they are part of the community - and are welcomed - with a hug.
    • Graduation is another ritual that only is important in the cancer world. In chemotherapy, once the last chemo treatment is finished, the patient gets to ring a ship's bell and receives a bottle of carbonated apple juice. The patient brings in a treat for everyone - usually donuts, bagels, or a cake. There is applause, pictures, and that's it! Scott and I wore our "Thank you" t-shirts and brought donuts. This ritual is taught by example, nothing is said or shared about it, you just follow what has already been done. 
    • The radiation oncology department does similar. 
    • I forgot to mention making hats - and giving them. I have soooo many, most are awesome, some are cute, and I've received a few that I will donate. I have never worn a hat, seriously never, and it has taken some getting used to. But I have grown dependent on them, and I think I look pretty darn good!   
    • There is also lots of breast cancer jewelry - just like hats, some tacky, some nice. I will wear some of what I've received as gifts until I finish my treatments.
  • Food plays an important role in a cancer patient's life. Food is something we make, say, and do. 
    • What to eat - advice is given, and stories are told, about what to avoid and what to embrace. Every breast cancer patient I spoke with could eat the Dreyer's fruit juice bars and Creamies brand creamcicles. Most folks liked yogurt as well.
    • What not to eat - avoid spicy foods, but eat foods with flavor. Some foods will have a metallic taste because of chemo, some people eat with plastic utensils during chemo, some say that chemo and food are similar to pregnancy and food - you don't know what you want to eat until the moment you're hungry. It's hard to cook while having chemo for this reason. It's also hard to bring in food for chemo patients because of this. (The first 2 months I lost 10 pounds because of my aversion to food. The second 2 months I gained 12 pounds because I was ravenous and on steroids.)
  • Folk Medicine
    • Of course there are things that benefit the cancer patient as much as the prescriptions given. And even oncology and radiation nurses share these tips. 
      • Candied ginger is great for nausea, so are See's Dark Chocolate Peppermint Patties!
      • Tea Tree Oil and Sally Hansen Hard as Nails are good for preserving nails. As is Gold Bond ultra-strength lotion. 
      • Rub tea tree oil on bald head during radiation. 
      • Senna is a natural stool softener - keep it on hand, don't use prescriptions for this. 
      •  Bathe in Celtic Sea Salts to reduce water retention and to leach toxins out of your system. 
  • More Do (unspoken rules): 
    • Naps are expected, and talking about taking naps or naps is expected and encouraged. 2 naps a day are applauded. 
    • Exercise is as important as a nap - 30 minutes a day of walking is said to encourage healing. 
    • Complaining is just fine, whining is not. Complaints about things one cannot control are expected: fingernail and toenail loss, smells, chemo breath, chemo taste, port access, blood drawn, weight loss, weight gain, chemo brain (forgetfulness, names, slow response), tingling in hands and feet, exhaustion, pain. Supporters can complain as well. Aches and pains can be compared, but not trumped. 
    • Manners are important - thank you, please, you're welcome, no smells (no perfume or heavy scents in chemo room). 
    • Sickness is allowed in chemo room, but do not talk about those who are/were sick and their sickness outside of the room. 
    • Chemo room remains quiet and calm. No speaking on phones (text or go into the hall, which is awkward with an IV tower). IPads, Kindles, IPods, books are acceptable forms of entertainment. So is sleep. Not really a place to socialize.  
  • Do Not (unspoken rules): 
    • Outsiders cannot give advice.
      • Sharing tips is great, giving advice is not so readily accepted.   
    • No joking about cancer by outsiders.  
    •  Self-help books, mind over body books, alternative treatments books.
    •  Cancer life is a liminal space - which cannot be judged or compared (I have never worn a hat in my entire life, pre-chemo. Now, I must.). 
    • Don't visit cancer patient during chemo or radiation treatments, unless invited.
Those of us with cancer need support and outside of the amazingly spectacular medical team I see 4 levels of support:

1.     Trusted 2 or 3
1.     These are the folks you sleep with, eat with, who see you naked (physically and emotionally), and are very close in proximity. 
2.     Cancer Mentors
1.     These are people who have had cancer, or have been part of this first group with a loved one. They are the folks who can be subjectively objective about cancer - sharing the tips, listening with empathetic ears, who can understand the aches and pukes, and who can tell you, "You go, girl," when you need that. They are also the ones who can say to a #1, "When my wife . . ." or, "My daughter made me . . ." They answer questions without asking questions. 
2.     I belong to a Breast Cancer online support group where I've been able to do a daily check-in, where I've been able to ask simple questions, and where I've gone to hear others' stories (thank you Colt for finding this for me). 
3.     Cheerleaders
1.     Oh goodness, this category is hard. I now understand why sports' teams have cheerleaders. Their encouragement, shouts from the sidelines are great motivation for working hard. They may have no experience with cancer, but they know their "team," and they have the love and separation to be able to be a strength to the 1's. 
4.      Caregivers
1.     Not that the above don't give care, but these are the silent ones, not necessarily part of that inner-circle, but eager to help however they can. 

So there you have it, cancer culture and cancer community. 


Sunday, November 9, 2014

Folklore - Advertising

Introduction to Folklore: 


Cultural Conversations in the Community


Holidays, Food, Art, Music, Jokes, Tales, Celebrations



English 2210 – 01
Tuesday Thursday 8:30-9:45



Ronda Walker Weaver




Monday, November 3, 2014

Identity and Surviving -

I listened to a TedX talk by Debra Jarvis, a chaplain, author, and breast cancer survivor. What she had to say about breast cancer, the terrible "S" word, and moving forward was not only an affirmation for me, but a message for anyone facing a life change, an identity crisis, stagnation, or a desire to move forward, without the bonds of the past defining them.

One thing she said has been on my mind quietly for these past several months, as I forge my new identity based on my past, but based on where I'm moving - forward. She said, "Claim your experience, don't let it claim you."


Sunday, October 26, 2014

Dis-ease

On Friday night I went to my niece's soccer game - she plays for the University of Utah. The game was the culmination of the U's Breast Cancer Awareness Week.

If you wore pink, you got in free - they handed out pink megaphones, and during half-time the announcer made this announcement -

"It is important that all women receive mammograms and do monthly self-breast examinations. Thank you all for your participation during this week's Breast Cancer Awareness Week. It is important that we all do what we can to get rid of this awful disease."

OUCH!!! Ladies and Gentlemen - I have an announcement for you -


BREAST CANCER IS NOT A DISEASE

I yelled, this out, ending with a Dammit (which my son didn't appreciate, in front of the grandchildren). However, I think restrained - I should have used a louder voice and a much harsher word of emphasis. 

Now others may disagree, but to me the definition of a disease is something someone catches due to an autoimmune disorder, a weakness in health, an infection, a virus. Cancer may (and I use this term very lightly) be genetically "caught," cancer cells are abnormal cells, and I could "catch" cancer if I maybe smoked 4 packs a day, etc. 

But I did nothing wrong - I did not, do not, have a disease. I had cells that freaked out, morphed into abnormal cells, and these cells were cancerous (in my humble opinion). 

So no - I'm not contagious; I'm not a carrier; you can hug me; you can even touch my bodily fluids and still not "catch" cancer from me. 

Damn it - 

Wednesday, October 22, 2014

Travelled -

Scott and I went to Billings, MT this past week. As I mentioned in an earlier blog, Scott served a 2 year LDS Mission in the Western United States Mission, headquartered in Billings. We were able to spend 2 short days with my sister and her husband and family in Billings.

However - the drive that took us to and from Billings was almost as awesome as the time we spent with Vicki and family.

Oh my goodness - there is beauty all around - and I feel so blessed to have 2 eyes to see the beauty, a car that can make the drive comfortable, and the means to take our time seeing the areas.

We drove from Orem to Ashton, ID,staying at The Jolley Camper (owned by friends, and I would highly recommend). The next morning we drove to West Yellowstone (what a ghost town this time of the year), through Yellowstone Park, coming out at the North end in Gardiner, MT, staying at Yellowstone Gateway Inn (another high 5 recommendation).




We left Gardiner, drove to Livingston, MT, then west to Bozeman, and because we were way ahead of schedule, we drove to Three Forks, MT, and took a quick picture of the 104 year old Sacajawea Hotel (We stayed there many moons ago when Tyler was sick with strep throat; there was no room at the inn, so we spent the night in a lovely employee's boarding room). And then with more time to roam, we wandered through Bozeman, then headed east, looking for some romantic local lodging - which we did not find, and because of that we ended up spending the night in a highly over-priced Howard Johnson room in Billings.


Two days in Billings was not enough time to see Billings or Vicki and family. But - it was enough time to show us their world, and for me particularly, to spend some time with Vicki - all to myself.




Then on to Jackson, WY Sunday - driving through Red Lodge, MT (Scott spent 3 months there on his mission), next to Cody, WY and the Buffalo Bill Cody Museum, next through Yellowstone Park, out to Jackson, spending the night there (inexpensive, warm, quiet, good bed).



Monday we woke refreshed, and drove home through Idaho Falls - seeing freshly harvested fields reminded me how much I love being an Idaho girl.


And home - jiggity jig. Fast, furious, and absolutely delightful. Sunday's drive will be on my top 5 scenic drives - I am incredibly blessed to live in this part of the country - and blessed to love seeing nature at its finest - from fresh cut hay, to freshly harvested potato fields, to golden yellow leaves lingering on willows, to the dark red branches of river willows and the deep greens of the pines. Sunlight filtering through the trees, shading from mountains and cliffs, bright direct sun in the plains. And to top this all off - the most spectacular sight ever - an owl came swooping through the woods near Jackson Lake, flying low and directly toward the car. I saw its eyes - a fat body, broad wings, and a round face - gray, white, brown, probably a Great Gray Owl - what an image, what a beauty.

So it's Wednesday morning, caught up on e-mails, ready to get back to writing, ready to prepare for cold weather. And my words of summary are this - warmth is everywhere, beauty is everywhere, and the west is my home -

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