Tapped on the Shoulder

To each there comes in their lifetime a special moment when they are figuratively tapped on the shoulder and offered the chance to do a very special thing, unique to them and fitted to their talents. What a tragedy if that moment finds them unprepared or unqualified for that which could have been their finest hour.      ~ Sir Winston Churchill

Jenna said to me the other day, "Mom, your life is always about discovering what's around the corner, moving on, moving forward, moving new. I don't know you any different." And I said to her, "Life is about progress, about being prepared when those moments come along, being prepared to answer, to decide, to change." I believe that being unprepared or unqualified for what could be my finest hour would indeed be a tragedy.

I know this journey is one of those times I've been tapped on the shoulder -
Everything is as it should be. 

Happy Birthday to Me

My sister called last week to find out what I wanted to do for my birthday. Our texts were:
What do you want to do for your birthday?
Umm, Jenna's doing something, call her.
I did, I'm in charge.
I don't know.
Do you want to do something at my place, your place, go somewhere?
I don't know.
Who do you want me to invite? I'll call people.
I don't know.
OK, get with me when you decide.
OK.

And then I stressed - it's not about the many family and friends I want to see, it's that I don't have the energy to see anyone, be in a group, and my immune system is not strong enough to get sick.

So I called her: 
I want a party - a post radiation party, in the sun.
You want that to be your birthday party?

Yeah, just a party to celebrate spring and new life and hope.
OK. That's fine.

Simple conversation, but do you know how much strength it took for me to say, "no" to a party? This is me, isn't me.

 

Sheri and Ronda approx. 3 and 5 yrs. old

 

I'm 54 today, made it this far - and the odds are looking pretty good.

 Scott and Ronda with Tyli and Keegan Jan. 2010, my Rockstar BDay Party

Joy is what makes life worth living, but for many joy seems hard to find. They complain that their lives are sorrowful and depressing. What then brings the joy we so much desire? Are some people just lucky, while others have run out of luck? Strange as it may sound, we can choose joy. Two people can be part of the same event, but one may choose to live it quite differently than the other. One may choose to trust that what happened, painful as it may be, holds a promise. The other may choose despair and be destroyed by it.

What makes us human is precisely this freedom of choice.

I'm choosing JOY.

Mrs. Potato Head

So I mentioned the guy in chemo who said my eyes were so beautiful he could lick them - and then added he must have been a dog in a former life. So sweet, so kind.

But the honest truth is most days I feel like Mrs. Potato Head - a shell with a jumbled mess of pieces that can be put in one of several holes, and someone besides the Mrs. gets to decide which limb goes where.

Take my make-up off and I'm a bald woman with no eyebrows (I'm no good at faking them either) and minimal eyelashes. I have a chest filled with scars and unnatural objects (port). I have an appetite and have been eating us out of our home, gaining 12 pounds in the past 2 months. I have bad chemo breath, a dry mouth, and a puffy face. My legs have little strength, my feet are cold or numb, my hands are swollen and waxy, and I have sore yellow fingernails. I have no energy for sex or a conversation about sex.

I wear comfy cozy clothes, a hat to bed, slippers, and I get dressed up for chemotherapy and hydration! I am certainly not some sexy 50 year old independent woman. And no patronizing - because -

I whine, complain, obsess over the future, try to not think about the future, have no tolerance for drama, and very little tolerance for even humor. My attention wains at about 5 minutes, and you can find me in bed most days. I haven't been more than 30 miles from home since Sept. 10, 2012.

Now doesn't that sound dandy! Certainly doesn't sound like the me of 5 months ago, and I'm still trying to figure the 2 women out - but that makes me anxious, then blood pressure goes up, and there I go again, whining, and that makes my face puffy and red!

Praying for spring and healthy grandchildren whom I can hug and play Mr. and Mrs. Potato Head with.

Four-leaves of Cancer Support

I think I've over-worked the cancer culture stuff. But there is just one thing more I want to say, then onward. 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. In my case that's been Scott, my parents, and Jenna. 
3. 
   
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. 
1. I've had beautiful Heather; she finished her cancer treatments shortly before I began and has answered every question with an answer, a hug, or a tear. I've watched her heal, and her healing gives me hope. 
2. I've also had Karen - her wisdom when I first started down the path, gave me the strength to stay with this journey. She is my silent strength. She received her 1 year "chip" at the same time I began my trek. 
3. And Cheryl, whose cancer is different than mine, lives hundreds of miles away. We check in with each other on a weekly basis. 
4. Another Cheryl - pediatric oncology nurse. She answers my questions, gives me hugs, and tells me I'm her "hero."  
5. Other women with breast cancer I've connected with through family and friends - good women. 
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). 
1. I also belong to the local American Cancer Society Breast Cancer Support Group. Lovely ladies of all shapes and ages. There is an instant deep conversation amongst us - even upon meeting for the first time. 
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. 
2. I'm gonna try and name my cheerleaders - please - this is only my chemo brain list! 
1. Cody - she is my #1 cheerleader. I get up in the morning because I know she's expecting me; she is my personal trainer and friend. I trust her. I've grumbled, cried, stretched, ached, whined, laughed with her. She's seen my incisions, my bald head, and smelled my chemo breath!
2. Family - Tyler, Daniel, Diana, Julie, Sheri, Brett, Maria, Craig, Vicki, Scott, Karen, Pete, Aunts and Uncles and their families. I am in their thoughts and prayers, and that's what I need. I don't spend much time with any of them (get well so we can!), but their love crosses all boundaries.
3. Friends - Irma, Holly, Sue, Mary, Shirlene, Dawn, Terri, Malissa, Vivienne, Nick, Gene, Steve, David, Betty, Lori, Marv, Kevin, Carolyn, Karen - those who've checked in with me via phone, cards, e-mails, walks, yoga class. They listen, distract me from cancer, laugh with me, and tell me I'm beautiful. They understand when I can't visit.
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. 
1. This includes those who have brought meals (thank you Darnell for managing this), those who send cards, those who send prayers, those who have crocheted hats. Those who have cleaned my house (Kristee, Blanca). 
2. These folks check-in via Facebook, Blog, e-mail, leave kind notes, forward on sweet thoughts, and I know they care. I can't begin to name them. 

So there you have it, cancer culture and cancer community. This bundle of four reminds me of the awesome earrings Linda made for me when I began this cancer journey. All 4-leaves are necessary to provide "luck," and I need every bit I can get.

Cancer Culture #2

• 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.

Okay, I've beat this up. Summary on Monday!

Cancer Culture #1

So, speaking of liminality and liminal spaces and places, let's talk 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.

More tomorrow -

Liminality Waits - Better Story Today!

So, remember the video with Mike Peters wishing me well? Here it is again.

And remember the picture of me on my last day of chemo? 

Well go here to see the fun outcome of this friendship with Mike and his Love Hope Strength Foundation. My story is the first button. Pretty cool -

Liminality

I love this word - Liminality. It means "betwixt and between;" it is often described as a threshold - not in the room, not outside of the room, but some place in-between. Some philosophers describe liminality as a place between between life and death. When I teach folklore, I teach about liminality, or liminal spaces/places. In the context I teach this term, I mean a place out of time or a place out of place, something different than the every day.

For instance - holidays - they are different than the every day - from what people make, say, and do on the every day to what they make, say, and do for the holiday. A liminal space can be 1 day or several days (or even hours) - St. Patrick's day is a liminal day - where certain things that are not culturally acceptable any other day of the year are acceptable on that day - wearing lots of green, pinching those who don't, claiming Irish blood, excessive drinking, and speaking with an Irish brogue. Another would Christmas - which lasts from one liminal marker, Thanksgiving to New Year's. Language - Happy Holidays, music, clothing, ways of decorating, food, gift-giving, and the protocol or specific way of doing all of this is part of that liminality. And if you're not of the culture, you will either stumble or need a sympathetic friend who can teach you these ways.

Other liminal times include: birthdays, deaths, marriages, pregnancy, vacations, transitions - graduating from high school and going on to college, spring break, summer vacation, and my liminal time - cancer.

Yes, illnesses or diseases, or specific medical treatments can also be times of liminality. Beginning on Aug. 30 (when I felt my lump) until I finish radiation (which should be end of March), I am in a liminal place. I am not living my "normal" life, but rather a life with different ways of making, saying, and doing life. This life has its own language, its own culture, its own code of conduct, its own way of dressing, and pre-conceived ways of interpreting cancer, for those inside the cancer world and those outside of the world, plus those who are betwixt and between within that liminality - those who have loved ones living cancer.

Just thinking about this makes me happy. I haven't thought this outside-of-the-box in months! More on Wednesday.

Trying so Hard - Panic!!!

 I've had this panic "situation" for quite some time - What if I don't learn what I'm supposed to learn during cancer? What if I don't get it? I need to hurry and learn whatever it is I need to learn, because I don't want to go through this again.

And this weekend, while resting from this last crazy chemo treatment, I'm worrying - This is it, have I learned? What do I want to take on with my extra time? What do I need to keep off my list? What if I do too much? 

And I worry, panic, take this all so serious, wondering if I can measure up to the "test" I've been given, to the people who are watching/reading me. Shit - why haven't I learned?! Am I trying too hard? Why can't I give this all a rest and just heal?!

I love the website, Tinybuddha.com. This site is filled with wisdom; I swear the authors know me well. Today's essay really hits at my concerns:

“Freedom is instantaneous the moment we accept things as they are.” ~Karen Maezen Miller

The world is filled with people who work hard at being positive, peaceful, and more spiritual and who then feel bad when they don’t measure up. I know because I used to be one of them. And I still am from time to time.
That was before I realized something:
1 It doesn’t work.
2. Spirituality isn’t something you do; it’s something you are, and you are this right now. Just as beneath the chatter of your mind you are already positive and peaceful too.
3. You are already as spiritual as you’ll ever be.
There, article done: My views on trying to be more spiritual.
Well, okay, there’s more to it than this. Let’s back up—starting with a confession or two.

Confession 1: It’s after midday, I’m still in bed, and all I’ve eaten today is cheese.
(That was more like a warm-up confession; I mean, who doesn’t stay in bed with half a block of cheese from time to time? And in all fairness to myself, it was a small block.)

Confession 2: I try hard, at everything—or at least most things.
(My husband made me add the last bit because he said I don’t always try hard when we play backgammon.)
But seriously, or at least half seriously, if there were a lecture on How to Relax More and Not Try So Hard, I’d be in the front row, my hand in the air, with half a dozen questions. I might even take notes and record the lecture so I could listen at home.
For me, “trying hard” has been a badge.
We believe that if we’re successful, whatever success looks like in our sphere of influence, we’ll he happy and loved.

We’re all ‘’try hards”—we all do it; it’s a universal condition. Your trying will look different to my trying, but it’s all the same. 


You might not be focused on getting good grades or running the best little bookstore in New Zealand, like I once was, but you’re trying hard at something: being the model member of a motorcycle club, a good father, or someone who posts the funniest Facebook posts. You’re trying hard.
Question: My propensity for trying hard annoys the crap out of me at times, but still I do it. Arrghhh, but why?!
Answer: My mind.

I try hard because I have a mind, and this is what all minds do.

Your mind is constantly calculating what you should be doing now so that you’ll feel better in the future. Get a college degree and then you will feel happy, your mind tells you. Do more yoga and then you’ll feel more peaceful, your mind says.

One of the things that can happen on the road to self-awareness is that we begin to understand, intellectually anyway, that inner peace isn’t found in material possessions, and so we divert our attention to trying to be more spiritual.

I know I did. I read books about spirituality. I signed up to newsletters.
My mind started to tell me, inner peace isn’t getting a new car, silly; it’s in being more present, in meditating, being more environmentally friendly—these are the things you should be focusing on!
And it’s true; happiness and contentment are only found in the present, and meditation and mindfulness are great ways to do this. So is actively “doing nothing,” but I digress. My point is this:

You can make spirituality as materialistic a goal as a groovy new yoga mat.

That little voice in your head that used to say you weren’t good enough because of the crappy old car you drove will turn it’s attention to what a failure you are because you catch yourself being judgmental, or because you haven’t meditated today.
“How hard can it be!?” our mind screams at us. “You just read a book about feeling grateful, and here you are two weeks later being ungrateful.”
“When will you ever learn?” your mind says. “Look at how calm Marianne Williamson is, and you’re not even half as calm!”
A few years ago, I spent a year being silent. Every day I turned my attention to “doing nothing”—and by that I mean I removed all distractions, like television, reading, and so on, and just sat. I let my mind wander and noticed it from time to time.
My friend had told me that “in silence and doing nothing the bits of you that needed fixing, fix themselves.”
I wanted to fix my propensity to overwork because it was causing me problems. So there I was, “doing nothing.” And guess what?

I tried so hard at “doing nothing” that I became phobic and more anxious than I’d ever felt before! I was trying hard at not trying hard. When I realized this, I had to laugh.

It wasn’t until a few months later that I realized I was as critical of my attempts at spirituality as I had been in the other areas of my life I was trying to change.
A story I like to tell goes like this:
“You know, don’t you, that you’re a negative person?” a friend said to me one day.
I thought about it for a while, and it occurred to me that he was right—I did expect a bad outcome a fair amount of the time. I didn’t truly believe in myself.
“Oh no, you’re right,” I said, “So what do I do about that?”
“Nothing.“ he said. “It doesn’t matter whether you’re a negative or a positive person, and you probably won’t always be a negative person; you just are right now.”
“What? You mean I don’t have to try to be more positive??”
Now I was starting to get it. I didn’t have to change who I was; I could just notice and accept how things were. And, as I discovered, this is the quickest way to move on anyway!

Are you making spirituality a materialistic goal? Are you critical of yourself for not being as “spiritual” as you want to be? Or as peaceful? Or as positive? Or as mindful? 

One of the things I took away from my year of silence was an understanding of my mind. The truth is that anytime we think we're not good enough, this isn’t reality; it’s just our mind talking. You don’t have to believe what your mind tells you.
We are good enough, right now. And this isn’t even a feel good pep talk; it’s the truth. A spiritual truth.
It’s 3pm and I’m still in bed. I still have my sometimes-negative tendencies. I still have a whole host of other habits that books and spiritual teachers tell me I shouldn’t have, and then there’s the situation with all these cheese crumbs.
But now I know—it’s perfect.
(It’s even perfect when I forget how perfect it all is and start judging myself!)

So what does spirituality look like if it’s not getting a new car or mastering the downward facing dog?

It looks like you, right now.

http://tinybuddha.com/blog/3-reasons-to-stop-trying-so-hard-to-be-positive-and-peaceful/lo

Meant for Me

First off - I need prayers and positive energy and virtual hugs. This round of chemo has left me laying at death's doorstep. I am so very chemo sick, puffed up from the extra steroids I received, and I know it will pass, but my energy (emotional and physical) is zapped; I have nothing left. Hopefully hydration, rest, and your strength will get me through this phase. What a vicious vicious treatment.  

On a more positive note - 
I subscribe to a daily e-mail from the Henri Nouwen Society. Nouwen was a Catholic priest and poet, who died in 1996. Nouwen believed that what is most personal is most universal; he wrote, “By giving words to these intimate experiences I can make my life available to others.” 

It seems that every day this week the thoughts I've received have been meant for me. Yesterday, while thinking about a future - can you believe that - I thought about next week, next month, and I haven't done that in 5 months - I thought about who I will be, who I want to become, what I want to do. And then Nick's electric picture of me (see Breaking News post) helped me see me, and I realized I am evolving, but the essence of me won't change. Then this thought came in Thursday's mail, and I read it as if the somewhere or someone is the Me of the Past, comparing the Me of the Past to the Evolving Me.

 

Be Yourself

Often we want to be somewhere other than where we are, or even to be someone other than who we are. We tend to compare ourselves constantly with others and wonder why we are not as rich, as intelligent, as simple, as generous, or as saintly as they are. Such comparisons make us feel guilty, ashamed, or jealous. It is very important to realize that our vocation is hidden in where we are and who we are. We are unique human beings, each with a call to realize in life what nobody else can, and to realize it in the concrete context of the here and now.

We will never find our vocations by trying to figure out whether we are better or worse than others. We are good enough to do what we are called to do. Be yourself!

On Sunday I read: 

The Spiritual Work of Gratitude

To be grateful for the good things that happen in our lives is easy, but to be grateful for all of our lives-the good as well as the bad, the moments of joy as well as the moments of sorrow, the successes as well as the failures, the rewards as well as the rejections-that requires hard spiritual work. Still, we are only truly grateful people when we can say thank you to all that has brought us to the present moment. As long as we keep dividing our lives between events and people we would like to remember and those we would rather forget, we cannot claim the fullness of our beings as a gift of God to be grateful for.

Let's not be afraid to look at everything that has brought us to where we are now and trust that we will soon see in it the guiding hand of a loving God.