Wednesday, October 31, 2012

Cancer Etiquette

Saturday was Scott's father's funeral. I was not able to attend, although I did make it to the cemetery for the burial. Because of this semi-social function, and others I've been lightly a part of the past few weeks, I thought a tutorial in cancer etiquette might be beneficial.

1. I am not cancer.
2. I am not contagious.
3. Ask if you can hug me - chances are I want/need a hug. Don't be offended if I won't hug you - I cannot afford to get sick.
4. If you tell me I'm in your prayers, please mean it.
5. Don't tell me how good/bad I look - I know.
6. I may not have hair, but I am totally aware of that. You can compliment me on my hats and scarves - don't ignore them.
7. Offer something - can I come visit, can we come visit, can we stop on our way home to say "hi"?
8. You can always talk to me - don't go around me to get answers that pertain to me. Ask me.
9. I am weepy, I am angry, I am pissy, I am grateful, I am tired.
10. I am lonely. I'm a school teacher who misses her students terribly. I am a chaplain who misses reaching out to others. My heart aches for interaction - please reach out to me.
11. An e-mail is always good - or a text, or a voice message. I'll read and listen, please don't expect a reply, although I'll do my best.
12. I may not have the energy for a long visit, but I may, and I'll let you know if I'm tired.
13. If you ask, be prepared for an answer.
14. Don't assume you know what's best for me - ask.
15. Scott's hurting too - my cancer has affected him; his dad recently died. What can you do for him?
16. Healthy food is good - remember I'm a vegetarian, but Scott loves poultry and fish (cookies, pears, brownies, granola, berries).
17. Mark Twain said he could live for days on a kind word - so can I, just be sincere.
18. I don't know my time-frame; I don't know how many more weeks, months, this will go on. Honestly, as I've mentioned, I'm living one day at a time.
19. If you ask if there's anything you can do for me, I may have an answer! Be prepared.
20. Don't say you're going to do something then not do it.
21. Share - just don't compare.
22. My life right now is cancer and work. I cannot plan much more than that. But spontaneity is fantastic - if I can't I will tell you.
23. I need intellectual stimulation! If you want to talk about people, don't. If you want to talk about ideas - do!
24. Storyteller Kevin Kling said, "You can't judge another man's pain."
25. We either make ourselves miserable, or we make ourselves strong - I need your help to stay strong - don't wallow in my misery with me, but don't discount it!



Tuesday, October 30, 2012

Sports and Cancer

I seldom read the Sports Pages of any newspaper, yet I enjoy Dick Harmon's, of the Deseret News, writing. Yesterday's column was beautiful, a reminder -

Dick Harmon: BYU's Dave Rose and the story of Don McCandless

Published: Monday, Oct. 29 2012 3:09 p.m. MDT

God has granted Dave Rose another year to live.
And that should open every discussion and put in perspective every angle of his role as BYU’s basketball coach in seasons to come.
There are more important things than the games we play. And cancer is no respecter of persons. It doesn’t matter how much money you have, what your title is, how many friends you have, what kind of life you’ve lived, whether you are loved or hated. When it comes, it comes.
It’s been three summers since Rose found out he had pancreatic cancer. And he lives. It is one of the deadliest forms of cancer, and while I’m sure there are other survivors, I don’t know any.
Every six months, Rose undergoes tests to determine if his cancer has returned. Every six months, he gets uneasy. Since his diagnosis, he has changed priorities in his life, looks at everything through a different prism.
The Rose story opens up an opportunity to tell you about my neighbor and friend, Don McCandless of Orem.
This summer, Don, an avid outdoorsman, golfer, lawyer, man of faith, doer of great deeds, father and husband, got out of his truck on a dirt road near Lake Powell, where he was headed with his boat. An undercut bank in the road gave way and he seriously broke his leg, requiring surgery.
Never did he imagine in his wildest dreams that this bad break was only the beginning.
Just under two weeks ago, Don felt very ill. Some say he’d been a little depressed. He had stomach issues, something just wasn’t right. On a walk around our block, a neighbor, Kim Stewart, remembers asking Don how he was doing and he said he just hoped to get home. His wife, Karen, a third-term Orem City councilwoman, was in California on that day.
Within a few days, Don, only 53 and an active and avid runner, was in the hospital in a coma after suffering two strokes. With swelling on his brain, few questioned if he would ever come out of the coma, and doctors said he’d suffered serious brain damage.
In just over a week’s time, it was evident Don McCandless was not coming back. Doctors discovered he had lesions on his liver. After further investigation, doctors told Karen he had stage four cancer. It had metastasized and spread through most all of his organs.
It was left to Karen and her family to decide to remove his respirator last Friday and did so at 10 a.m. Sunday morning. Later that night, Don McCandless passed from this world.
For many a night on this earth, I’ve looked at the stars on a campout with our church youths with Don McCandless. One time near Fish Lake, when I’d rushed from work to camp and forgot some food, he pulled out a can of stew and tossed it my way. I’ve put my fishing line in an ice hole he’d drilled, I’ve been on his boat, shared fishing tales, golf tales, traded opinions about BYU football and basketball and sat behind him and his family on the fourth bench, left front side of our chapel. It is difficult to wrap my mind around the fact his funeral is Friday and my promise to take him golfing when his leg is healed will never happen in this lifetime.
His death has stunned our neighborhood, and as I’ve talked to those who know Don, we are all humbled to the core about our own mortality and if we really have our lives in order if it came our time to go.
I bring up the story of Don McCandless because there are many just like him in this world who exit way before their time.
I bring this up because Monday, Dave Rose took part in the West Coast Conference media day in Los Angeles. He talked of the upcoming season, his hopes and goals for his team.
I bring up Don because of the words Dave Rose’s wife Cheryl told our newspaper two Januarys ago with tears in her eyes: "You never want to say you're grateful for cancer. We were fortunate; there are so many others who have had nothing good come out of it. But we're so grateful we have that perspective, and I don't know if we would have gotten it any other way."
I bring this up because when the time comes to second-guess Rose over a game plan or execution of a set of plays at crunch time or his team’s failure to win a game or advance in a tournament, it will always be with the knowledge that that stuff really doesn’t matter.
The fact that Dave Rose is alive, that he can kiss his wife and hug his children and grandchildren, that he can go to work and drive home at night and have dinner with his family … well, it is simply the greatest blessing of all.
On this day, I mourn Don McCandless; I salute Dave Rose. And I say to you, take nothing for granted in this life.

Dick Harmon, Deseret News sports columnist.

Monday, October 29, 2012

Lost

Today is my pity party - and if any of you want to join, you're welcome to -

I feel betrayed by my body - I've worked so hard to be healthy, and then this? Why?
I looked in the mirror this morning, after getting out of the shower, and did not recognize myself. As fast as I could dry off my bald head, with stubble in a few places, I put on a hat. I don't even want to look at myself to put on make-up this morning. I have very little hair left - eyebrows, eyelashes, and hair on my arms, that's it. Why? I have no appetite - and this morning, walking, I took a sip of water and then had to stifle myself from throwing it back up. Water?! I'm constantly tired - lethargic, I used to have so much energy, now 10 freakin' hours of sleep a day, which includes a nap or two, doesn't seem like enough. I'm pissed because I have to take a pill to sleep, a pill so I'm not nauseated, a pill so my anxiety doesn't control me, a pill so I'm not constipated - because of the other meds I'm taking.

I'm an emotional wreck. I cry at nothing - I cried because the gym was locked this morning; I cried because I look so scary; I cried because it's my best friend's birthday today, and I cried because another friend's husband passed away last night (that's not nothing, but I've never met this man). I cry because it's a beautiful day, because my jeans fit, because I'm tired. Mostly - I cry because I am not brave - and I feel like I'm a fraud - to everyone who says I'm brave - I'm afraid I've let you down. I cry because a friend cares enough to call, and I cry because I don't want to talk with him, because I don't want to cry. I cry because a daughter calls - and my love for her is so strong, and I have nothing to give her.

I'm fickle - my concentration is zero - I cannot read, watch a movie, work, visit, eat. I have no appetite for conversation, yet I yearn for conversation. I don't want to see anyone, but I wish I wasn't so alone. I thought I wanted yogurt and fruit for breakfast, nothing sounds good now. I cannot plan more than 30-60 minutes ahead of time, and I like a schedule! I have nothing to look forward to - and I have no energy to look forward.

I'm lost - I can't find Ronda anywhere. I'm not sure I know, or even like, the person that has taken over me - body and soul. I don't know what to do with her.


Friday, October 26, 2012

Max

Scott's father, Max Dickson Weaver passed away on Monday, Oct. 15, 2012, he was 95. I wrote this for Max's 90th birthday.



On February 27, 2004 I married Scott Weaver. However, long before Scott and I met, I had a relationship with Max Weaver. One of the first things I learned about my parents’ neighbors was that Max was a BYU professor and artist. I thought it awesome that Max had a groomed, and green, buffalo and rabbit in his side yard. I thought the pots showing from the basement window were wonderful, and that the stepping stones in the front yard were so much more inviting than concrete blocks.
One of my fondest memories of Max has been that of seeing him taking photos of Mt. Timpanogos. I’ve seen Max photographing Timp in snowstorms, rainstorms, at sunsets, and at sunrises. And the more I saw Max looking at Timp the more I began to watch Timp. As I raised my children, often not below this majestic mountain, I tried to instill in them a love for the beauty of our surroundings. Whether we lived in Brigham City; Sheffield, Alabama, or Springville, I would watch for colorfully brilliant sunrises and sunsets, and then holler at my children to come and share in the beauty.
In fact, these sunrises and sunsets were no longer defined by, “Come and see the sky; it’s gorgeous,” but, “Come and see this Max Weaver sunset.” For the past twenty years I have referred to a stunning setting or rising sun as a “Max Weaver” sunrise or sunset. “Oh look, at that Max Weaver sunrise.” “Wow, what a great Max Weaver sunset.” Always giving acknowledgement to the man who taught me, without teaching, to look up and see the beauties of an evening or morning sky.
As Max's daughter-in-law, I understand even more now about his love for Mount Timpanogos. I understand his love for that ever-changing mountain – with the changing of the day or of the season. And when I see the sun’s reflecting light on the mountain, or even on Utah Lake, I don’t collect my children to share this with them, but I will holler at Scott, or call Max and Ruth, to “Come and look at this beautiful Max Weaver sunset.” 
Thank you, Max, for being a part of my life for more than 30 years.

Mind you, I have not much of an interpersonal relationship with the family, having come to the family rather late, but this is what I've seen: 


Prior to a family event, I had made an appointment for Ruth to get her hair done - it was white, wiry, and basically out of control. Max couldn't understand why - he said, "Look at how her beautiful white hair frames her face, I love her just the way she is." So I canceled the appointment! If Ruth was cold, Max found a blanket, if she was hungry, he fed her, he opened and closed doors for her, pulled out her chair for her, complimented her, built her up. I had very few interactions with Max, he was as devoted to his art as he was Ruth, so there was never time for a conversation, for story-gathering. But he was a passionate man, passionate about life, beauty, God, passionate about his beliefs, whether they were political or religious. He was a man of his word.



I see my father-in-law in Scott (whose middle name is Dickson). Scott is an old-fashioned gentleman. He has always treats me generously, lovingly, graciously, kindly, patiently. Scott is passionate, he is a man of few words, he is an honest man. He is hard-working, and he is relentless in whatever he does, and he loves Southern Utah, just like his dad did. 

Max - I hope you and Ruth find time for each other - I hope God says, "Put down that brush Max, and let's have a chat," and that Max will. I hope God asks Max to paint another sunset over Timp, and Max does. I hope Ruth says, "Oh Max," with a twinkle in her eye, and he bends down, lightly touches her hair, lifts her into his arms, and they admire God's work. 




Thursday, October 25, 2012

Motivation

Some of my favorite cheerleaders are these quotes:

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.
Elizabeth Kubler-Ross


In the space between chaos and shape there was another chance.
~Jeanette Winterson

There's always going to bad stuff out there. But here's the amazing thing - light trumps darkness every time. You stick a candle into the dark, but can't stick the dark into the light.  Jodi Picoult

Take full account of the excellencies which you possess, and in gratitude remember how you would hanker after them, if you had them not. Marcus Aurelius

At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

Every time you are tempted to react in the same old way, ask if you want to be a prisoner of the past or a pioneer of the future. Deepak Chopra

It is by going down into the abyss that we recover the treasures of life. Where you stumble, there lies your treasure. Joseph Campbell

Be strong, go with your heart, and believe in miracles because anything . . . anything can happen. Marlo Javidando

And grandchildren - they're pretty good cheerleaders too - regardless of their language abilities, their words are always profound. 

Wednesday, October 24, 2012

Hair

For the past 4 days my scalp has felt like it did when I was 16 years old - wet-hair pulled back into a tight tight bun, and upon releasing that bun - finding out my hair was still damp and my scalp aching!
I've been afraid to scratch my head, run my fingers through my hair, mess my hair so it's not so flat.
And then it started falling out, just a few hairs at a time, but the reality is I'm losing my hair! Who would have thought, certainly not me, this would ever happen?
I'm not necessarily dedicated to my hair. I've worn it long, short, up, down, curly, straight - it's been an experiment to me, one that shows my moods, the seasons of my life. A friend once told me, "My hair is the one thing God gave me I can change, so I do."
I've always been blonde, didn't even put any color on it until I was 43 years old, just relied on the summer sun, and an occasional spritz of lemon juice, to keep it bright. I now color it twice a year, before school starts and again in January. I like my natural blonde look, matches my light eyebrows, matches me. In fact, if I had to choose hair color or hair length, I'll take color.
Now - no choice. No hair, no color.

I've never been much of a head cover person. I don't look good in baseball caps, beanies, knitted head-coverings. A pair of sunglasses and the sun to brighten my hair, that's it. In the cold, well, I just stay inside!

I'm also pretty much a what-you-see-is-what-you-get person. I know, no one out there is smacking their heads in disbelief at this statement! But - do I spend the next 6 months with a wig, in hats and scarves, or au naturale?

It came off yesterday with the help of Scott, Jenna, and Tempest. I'd look hot if I was in my 20s and angry! 



Tuesday, October 23, 2012

Humor

Promise me you'll listen to the first 16 minutes of this episode of This American Life - brilliant - 

Happy Tuesday!


Monday, October 22, 2012

In the Midst

There have been studies conducted to better understand why we see only what we are conditioned to see. Say - you're in a room with a bunch of friends, and you are asked to be on the lookout for the friend who enters wearing a red dress. You keep your eyes on the entrance, however failing to notice the man with the red shirt who has taken your purse off the table next to you.
Another example would be listening to great music, waiting for the drum solo to happen, and not paying any attention to the fact that the greatest piano solo ever written is playing right now.
Or the old stand-by - your partner is watching football on television, and when you ask him/her a question, they answer with a nod, not knowing what it was they answered to.
These scenarios are known as "inattentional blindness."

Marketing and advertising companies use a similar term to describe "sign blindness" or, "out of sight, out of mind." If you are accustomed to seeing the same thing, every day, then you do become blind to the ordinary. But if there is a change, then awareness is increased.
For instance, you have broken a leg, are using crutches, and you're surprised at how many folks with broken legs are hobbling around. You have new glasses, and  you notice how many people have glasses similar to yours. You're pregnant and have a 2 year old, and suddenly you are amazed at how many other women at the mall are pregnant and have 2 year old's. Or your mother has cancer, and you begin to notice women who are bald, wear wigs, or wear hats or scarves, and wonder.

My beautiful sister-in-law had a liver transplant 10 years ago. We are conscious of her health, and always aware of those who donate and receive organs, because of the awareness brought on by her story and the gift of a liver to save her life. This merges sign blindness and inattentional blindness. We are constantly aware now - sometimes to the point of ignoring who she is, because of, and in spite of her health battles.

As my family and I become involved in my breast cancer treatment, we are astounded by the number of women who have or have had breast cancer. We are surprised at how many people have loved ones who have had some sort of cancer, and we are surprised at how often breast cancer is in the media.

But, of course, it's Breast Cancer Awareness Month, or as some call it, Pinktober. I've griped about the commercialism of this ribbon-awareness fiasco, yet I do see the need. If there is not a time dedicated to pushing awareness, will we feel our own tumors, will we acknowledge our sister's survivorship, will we remember Eve and the promise made to her? Just as with any particular holiday - if it is not being celebrated or acknowledged, it is surely out of mind, until once again we are reminded to be looking for it.
So as much as I've whined, this month is that reminder, that red dress we should all be looking for, not at the expense of what may go missing, but because we don't see what we aren't challenged to see. We don't do what we aren't committed (say a contract) to doing. And if that commitment isn't staring us in our face on a daily basis (monthly breast exam written on the first day of each month's calendar), we will move on, forgetting.

The races will finish up, the fund raisers will be over, the month will end, the pink ribbons on the trees will go limp and frumpy (sign blindness), and soon, another ribbon will cover the pink one.
But commit, will you, commit to seeing more, different, out-of-the-box, be dually aware, not just of your world, but the worlds of those you love. I am not breast cancer, I am Ronda Lyn Walker Weaver - I am a teacher, a writer, a folklorist, a chaplain, a mother, a wife, a sister, a daughter, a friend. And when my months are over, and my breast cancer is gone, let me be your reminder, just as with Kristin - there is so much more - watch for it!
(PS, Kristin just stopped by with a beautiful pink and gray minky blanket!)

Friday, October 19, 2012

Knowing, and Not

It's been a tough week, and I'm not going to try and sugarcoat it. Like my friend Shirlene said, when I told her I was just going to be honest, "And why would we expect anything different from you?" If I could turn back time . . . but I can't, so I am trying to find goodness in my "situation" right now.

Goodness comes from:

Knowing I didn't cause this, and I acted quickly - I am healthy, and my healthy choices will make this process more simple than otherwise - no "wish I would have" for me.

Knowing I have insurance. As the bills come rolling in, we hit our individual out-of-pocket max in one week, I am blessed with healthcare. I give to the roadside panhandlers, and I've joked that one day perhaps I'll stand on the side of the road with a sign that says, "Need boob job," to see how much money I can make. But medical care is a necessity of life, and I count my blessings.

Knowing I can trust those who are providing my medical care. This has been such a comfort - they have a proven track record, are the kindest folks, and they are proactive, and they are happy to work with me and my requests. As well, I have friends who have been in similar situations, and they are sharing their practical tips, and I am grateful for their care. 

Knowing I have emotional and physical support. I am so blessed to have family and friends and colleagues who care about me - I have so little to give right now, and you all are giving so much (two types of soup in the fridge, a loaf of homemade bread, and warm apple cake, all delivered today, e-mails, cards, messages). Thank you Audrey "doodle" Gibb of the Oregon State Beaver's Women's Soccer team for wearing pink and playing for me today.

Knowing Scott is devoted to me. Oh he is a good good man, he serves me gently, lovingly, patiently. I vacillate between tears of gratitude and tears of frustration and pain, and Scott holds me close. He is my rock. Even this week, with the death of his father, he stands strong.

Knowing there is a plan - there has to be a gold lining in all of this - and I am hyper-aware that I need to be learning and growing from this, so my experience is not in vain. I will not waste these next few months wishing time away, I will learn and grow. Having this blog as a place to sort things out has been great therapy for me. This really is an "age of miracles and wonder." 

Goodness also comes in the not knowing as well:

Not knowing who or where I'll be six months from now, or even tomorrow - that's part of the adventure and risk I'm willing to take on this journey. It's part of the discovery - it is the excitement, even in the thick of things.

Not knowing what the plan is - I don't believe "God must really love you to give you this," or "God only gives you what you can handle." Nope, not gonna buy this, there's too much pain and hatred in this world, and knowing these statements, well, that's discounting agency, choice, beauty, reality. This is not the God I believe in.

Not knowing forces me to live in the moment, and that is something I must learn - I must learn it is good to not know.


Happy weekend to ya'll, thanks for traveling this segment of the road with me this week.

Thursday, October 18, 2012

Nadir - Low Point -



YOU CAN'T . . . 

You want to bet? Do not challenge me by putting those 2 words out to me. If I'm told I can't, then I'll figure out a way I can, whether it's "You can't be happy," or "You can't have your cake and eat it to," or "You can't swim upstream." I will - 

So, let me get this out of my system – shit, damn, hell, and sunny beaches. My white blood count is non-existent, in fact negative, and my red blood count is waaaay low, with my ANC values at 0. And when the PA said, "You can't . . . . " Which means I have to follow these rules, for this specific amount of time, for the safety of my own body, and I am grounded to the house until Monday, when “the Neulasta injection should begin working which will boost your white blood count just in time for chemotherapy on Wednesday.” I know she really means this, and I can't! Lovely! No visitors, no raw fruits or veggies if they can't be peeled - but I can keep exercising (the only thing normal about my life right now)!

I have some major anxiety and nausea, and the beginning of thrush in my mouth and a runny nose (Cytoxin attacks all the membranes, including sinuses and mouth), so I have new prescriptions for these, as well as 4 new prescriptions for “just in case,” which includes more meds for the nausea I've been having, the low constant headache hum, the constipation, and then any symptoms that come from taking these meds (use them all Ronda, use them). This is just to get me through the week, until the next chemo treatment, "We'll consult with our palliative nurse to see what we can do about the steroid, for your nausea, that is most likely the cause for your headache."

I’m having a heck of a time wrapping my mind around all of this - I think I'm a fairly smart teachable person, but this is so foreign to everything I know about health, and I am such a no-drug person, and I work so hard to maintain a peak level of health and fitness, that this cancer/chemo stuff just baffles my mind. I mean, I'm healthy, oops, I'm not, but I was, and I haven't done anything to harm my body, oops, I did - I let the chemotherapy in, but wait, that's to help me, but I have to be hurt to be helped?  In order to take care of my body, everything needs to be killed off with drugs, and then take more drugs to fight off what may continue to kill me! Geez -and I know I've written about this before, and I hope that in continuing to write about this I can figure all this shit out.

I quit ingesting artificial sweeteners about 2 years ago, because of what I'd read, heard, learned, and I've slowed down on my HFCS, white sugar, and I seldom use white flour anymore. But . . . perhaps I’ll go have that Diet Pepsi – what’s the worst that can happen?

The PA reminded me that I need to trust the oncologists, they are pros, they know what they're doing, they'll heal me as they have others, and when I'm finished I will be healthy. The quote on my e-mail signature says, "Sometimes the only way out is through." I CAN, I can -