Posted in breast cancer, health, photography, Yahweh's fingerprints

A NEW YEAR POST CANCER: THE ART OF SPOON MANAGEMENT

I went to see my beautician last week, the wonderful Nora who has cut and colored my hair for almost 10 years.  I asked her to do something that absolutely irritated her.  I asked her to cut my hair very, very short.

At first, she didn’t understand why a “bob” cut wasn’t going to be enough. Finally I defaulted to an analogy that a friend of a friend had used before to illustrate how she has to handle her energy management.

“Let’s say I have ten spoons of energy a day,” I told her as she tried to reason with me that short hair was not going to…cut it…so to speak.  “My meds take 3-4 spoons of energy away a day. That leaves me 6-7 spoons of energy to get dressed, work, cook, clean, run errands, and try to get out and do something once in a while.”

I could see she had begun to understand when I said, “I need one of the spoons back from my hair. Don’t make me cut this myself.”

I’d finally convinced her I needed my hair to be wash & go and that short was truly the only way to accomplish this task.  Honestly, I think Nora thought I would be unhappy when she finished and that’s the reason she didn’t want to cut my hair.  I felt desperate for this haircut and was thrilled for the results.  My hair is short, wash and go, and it looks great.  I knew Nora would come through.  She’s too talented to give me a haircut, no matter what length, and have me walk out unhappy. Has never happened. 

I had an overwhelmingly positive response to my hair, which reinforced my drive to get my energy management under control.  I know many people worse off than I am in this department, who charge through what they have to and fall exhausted into bed every night. Anything frivolous and extra just doesn’t happen often, or at all. 

I’ve spent the week thinking about my spoon (energy) management.  I know I can do this.  Prioritizing is essential if I hope to pursue more photography and other creative pursuits.  I want to challenge myself to a photo a week in 2012 to build my portfolio and my skills.  To do this, I have to save some of my spoons and choose not to do other things.  It’s difficult, at times, to make those choices, but choose I must.

Everything boils down to this: I have to accept what is, and make the most of what is. If anything 2011 taught me that if God chooses, he can take me in an instant, and I wouldn’t have to worry about any of this anyway.  God also taught me in 2011 that, though cancer is a complete game changer, it does not mean that the game is over, or that I still can’t accomplish what I dream to accomplish.

All that’s changed is that I have to manage my spoons better to get the results I want.

I don’t make New Year’s resolutions often, simply because I choose goals that are based on feelings or superficial notions.  I have decided to choose to pursue actual obtainable goals in 2012.  I need to be able to check things off the list and make everything I’ve been through this year seem a distant memory.

In 2012 I will:

* keep myself open to new adventures and manage my spoons to maximize the adventure

* learn as much as possible about photography and editing and not buy any new equipment (deals are off if I get to B&H this year)

* read more, for pleasure and business

* do what I need to do so that breast cancer does not return so I don’t have to go through this again (and this includes many things, like make friends with Tamoxifen, which has had another side effect manifest itself this week!)

I think four goals is enough right now (making friends with Tamoxifen may have to be a goal in itself).  I think that may use all the spoons I can find.  What ultimately needs to happen is that just having four goals and utilizing spoon management and accepting my new reality has to be okay.  I think that may be my biggest adversary – my mind.

My mind is still here, still relatively sharp, still active. It’s the body that can’t keep up right now.  In order to move forward I have to work harder to do it, plan better, manage my spoons better.  I will accomplish quite a bit if I can do these things.

Welcome, 2012. I am going to learn to manage my spoons and maybe even learn to play them to make beautiful music while I’m at it.

 

Posted in Advent, Yahweh's fingerprints

O COME, O COME EMMANUEL

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As I lit the Advent candles today I was listening to Robbie Seay’s “Mary’s Song.” I had to snap this photo as a reminder that though God is with us, remembering/learning how to anticipate Him is a valuable and enriching experience.

My soul magnifies the Lord,

My soul magnifies the Lord,

Holy is His name! Holy is His name! Holy is His name!

I know that as this week unfolds some might get caught up in the craziness that can distract from the true meaning of Christmas.  May you find peace in the midst of all activities and experience the joy Christmas was intended to bring.

Posted in breast cancer, health, Yahweh's fingerprints

IS THAT STEAM FROM A BIG TRAIN OR JUST BRAIN FOG?

Yesterday one of my friends compared Tamoxifen to Liquid Drano running through the body. That’s a great way to put it.

This week was overwhelming in terms of emotional and physical stress.  I won’t go into all the details, but there have been people lost to people I care about, year-end work stress, personal stress, and physical stress.  I was so tired Thursday that I fell up the stairs when I got home.  I was so tired I could hardly lift my feet.  I haven’t been that tired in a long time.  My friend Jene’ calls it TBT – Tired Beyond Tired.

I’d like to blame Tamoxifen for being so tired, but I can’t entirely.  The stress isn’t helping.  I sometimes feel like I’m walking on a train track and at some point there’s going to be a big train steaming toward me and I won’t be able to get out of the way.  What frightens me is that I feel a bit ambivalent about it.

I have better days since I’ve been on the Equalizer. Trouble is, my body is still adjusting to the pharmaceutical cocktail that keeps me going.  My brain still isn’t back on track. There are days I feel like my brain is in a thick fog. Other days I am so tired I can’t think.  I want to be able to attend everything to which I’m invited, but most of the time I end up at home exhausted.

Exhausted and FRUSTRATED.  

I was encouraged by many people yesterday and today, in person and online. Words are such a powerful medium in my life that to receive them in such a way from people I love gave me some much needed energy. I need to keep moving forward, even if I feel like I’m crawling.

I have three short work weeks in a row, and that will help.  I have some goal reassessment to do and a plan to execute.  I want my photography and writing to improve and grow and even if my body can’t keep up, I will make sure my mind will.

Right now, I have to give my permission to be Sassy, who is on Tamoxifen, and be whomever that happens to be.  I need to embrace what is…and take back control of what will be, meds or not.
Thanks again for of the encouragement!

Posted in breast cancer, health, Yahweh's fingerprints

WHEN SUPERWOMAN LOSES HER CAPE

It’s been a little over three months since my treatments ended, and almost three months since I’ve been on Tamoxifen.  It’s been a roller coaster ride for sure.

I have a love/hate relationship with Tamoxifen.  I love that it has the potential to keep breast cancer from ever coming back, but I hate how I feel about 10 days a month.  Of course, it’s hormone related and it’s brutal.  For most of the month I have good days.  My energy is increasing and I feel better in general.  Then, HELL WEEK starts. 

PMS has gone from a two day annoyance to an all out war with my hormones.  During HELL WEEK I alternately want to tear phone books in half and smite people (my tolerance for stupid and the judgmental is non-existent) or I want to crawl into bed with a box of tissues and cry myself to sleep, or cry reading the news, or while watching football, or sob during Happy Feet commercials.

Tamoxifen intensifies anything I ever experienced related to my cycle, but it’s only been a few years that I’ve had anything remotely intense.  When I was in college, I never got PMS of any kind while my friends had cramps and crying and mild/or violent mood swings.  I was so oblivious to what other women endured that M (who shall remain nameless because she might not remember she did this) put a curse on my children that they be born breech so I’d at least be able to commiserate with some pain related to my female reproductive parts.

HELL WEEK got so bad last month I almost stopped functioning completely.  I was nearly hysterical one night because I couldn’t stop crying (for no reason).  I wrote an email to one of my closest friends stating:  Is it bad that I hate the way Tamoxifen makes me feel so much that I don’t want to take it anymore and I’d rather take my chances with cancer?

I was serious.

My oncologist, upon hearing this news, was not amused, especially when I added that if we couldn’t at least get HELL WEEK reduced to annoying but manageable days, then she would have to force feed me Tamoxifen once a day and write me a note to work at home those days and pay someone to sit with me to make sure I didn’t cry all day and bankrupt myself on QVC or the internet buying things that made me smile through my tears.

I guess I made my point, because I have another prescription for some medical equalizers that should help HELL WEEK go away.  I will have to wait a week or so to feel any different, the doctor said, but HELL WEEK should lessen and if the prescribed medical equalizer didn’t work, we’d keep trying until we found something that would work.

It’s been really wonderful to have a team of doctors (there are five of them now) who are working so hard so that I will not only survive, but thrive.

The biggest issue I’m having is how limited I now feel.  All of the doctors have told me that I can no longer burn the candle at both ends as I’m accustomed. If I get overwhelmed and stressed, I can’t push through, I have to STOP and relax.  I can no longer dig deep and pull all nighters like I used to, nor can I keep up the wicked pace I sometimes force upon myself so that I don’t miss a moment of any event, day or breath.  If I didn’t have to sleep, I wouldn’t.  There’s so much to see and do in life.

I told my team of doctors (I’ve had 5 doc appts this week) that I am not handling losing my Superwoman cape very well.  I am no longer “invincible.”  I am no longer the queen of multi-tasking, and sometimes I say some words and mean others.  I tire easily.  My joints and muscles hurt (thanks Tamoxifen) and my clumsy moments are multiplying.  My eyes are not as reliable as they used to be, and working around that limitation as a photographer is frustrating and frightening.

I have done some rather stupid things that if I was clear-minded I would never do.  I get confused.  I feel like I’m walking through life in slow motion or in a thick fog.  I don’t feel like I’m the best version of myself right now, and I have fought long and hard to break out of my prison of mediocrity.

People forget that the fight against cancer doesn’t end for a patient when they stop chemo or radiation.  Years lie ahead, years filled with other medications and an endless stream of doctor’s appointments.  Life is forever altered.  The old life can never be regained completely. 

Women have to learn to continue to be Superwomen without their capes.

I’m sure it can be done.  I see examples of it every day.  I think the ones that make the transition learn to let go of their old lives and fully embrace the new, even with all of its meds, new diet and challenges.

Yes, I’ve lost my cape. I think it’s at the bottom of a Tamoxifen bottle.  Regardless of where it is, the cape is out of my reach.  Instead of chasing what was, I will live with what is, and invest in the what can yet be.  My life was more than the cape anyway.

Posted in breast cancer, Yahweh's fingerprints

WARRIORS IN PINK

April 1st I got a mammogram. I’ve been getting them for seven years now. Every year I am grateful for good results, considering how breast cancer has ravaged my family.

This year, April melted into a slow parade of doctor’s appointments, highlighted by a stereotactic biopsy, which goes down in my personal history as my weirdest medical procedure yet.  The biopsy came back ER (estrogen receptor) and PR (progesterone receptor) positive, Stage 0 (Zero).  In other terms, it’s like getting assigned a 5K while most other people diagnosed with breast cancer have to run an entire marathon whether they are prepared for it or not.

Breast cancer is one family badge I didn’t want, not that anyone ever wants it. I was tested last week for the BRCA gene, which will give a clearer picture about the road of treatment I need to travel.  As all this unfolds, people will see that this is a complete, life-changing event, one I hope I can weather with grace and courage rather than fear and misery.

I feel like the trajectory of my life has been forever altered, either knocked sideways by a pair of pink boulders or a breeze from a pair of pink butterfly wings. Only time will tell which. God will have to show me the meaning in all this, because right now, I’m still on autopilot, numbed by the shock. I have breast cancer.

I’ve rather hated the color pink my entire life. Yes, my mother bought me pink clothes as much as possible, but I had a deep dislike for pink. Pink meant “all girl.” I was almost sad when the color that represented the fight against breast cancer was pink (though I totally get why it is). Now, suddenly, find myself at the Susan G. Komen website looking at endless pages of items made in pink.  Suddenly, I don’t mind pink so much (though truthfully, I don’t wear pink well, but maybe some pink accessories?).

Still, I know, I’ve witnessed the real warriors in pink:  some who get a much, much, much worse diagnosis and live to tell the tale or fight like hell until they can’t fight anymore.  I arrive on the radar at Stage 0. I won’t even have to walk through the hell that is chemotherapy.  I get to go through the purgatory of radiation only instead.  I get to keep my hair. I get to live on. I have breast cancer, but I’m not going to die – not now, and not for a long time if I have anything to say about it.

I have surgery Tuesday morning to remove tissue to make sure all of the cancer has been removed, then the carousel moves onward to radiation therapy and whatever else they throw at me to reduce the risk of this horrible disease ever coming back.

Posted in creativity, music, Yahweh's fingerprints

THE ELUSIVE, YET STUNNING BEAUTY WITHIN SUCH MALADY

I enjoy reading the Owl City Blog.   Even though Adam is my mirror age (24), I can identify with so much of what he writes, especially his recent entry about his struggles with insomnia. 

It’s a funny thing. Even now I often find myself wide awake staring at the ceiling, and when the Ambien runs out, it seems as though all I do is toss and turn. However, a wry irony lurks within such sleepless nights by which my restlessness ultimately becomes the fuel for all sorts of dreams — consciously wakeful though they may be.

Adam does what I cannot seem to do – use that curse of too much awake time to be productive and turn my sleep deprived dreams into reality. Even as young as he is, he has learned to harness the power of that which keeps his eyelids glued open and uses it to bring his dreams to life.

Despite any such treatment, the ailment is altogether chronic and incurable BUT it may be the very reason by which I’ve unearthed such elusive, yet stunning beauty within such malady.

The elusive, yet stunning beauty within such malady.  


To have such insight and vision to see the beauty in the very thing we feel is a curse is a gift.  Embracing this gift may not lead to restful sleep, but it may bring me to a place where I can accept my normal and learn to work within it.

By the same idea, the alluring light at the end of the tunnel can often flicker and burst forth into a hideous freight train hurtling in my direction.

Been there, many times.  The freight train is the reminder that my beautiful malady has a dark side that I must deal with on a daily basis. The creative dreamer must make the freight train, the insomnia, the oddity, the malady work together.

However, I delight in the mere fact that being a dreamer often exempts me from the rules of reality and her consequences, be they good or bad — and I love how dreams propel the mind of an artist into imagining what the world might be like if such dreams were in fact reality. It’s a compelling thought and it keeps me on my toes. I love that.

Adam often says that “reality is a lovely place but I wouldn’t live there.”  I know exactly how he feels.

Posted in about shae, Yahweh's fingerprints

HITCHHIKER BIRTHDAY AND THE BATTLE OF SUCKUARY

Though I’ve been battling a bad sinus infection this week, I have to admit, my birthday week has been good.  I’ve been to dinners, been treated to cupcakes and cake and a Cafe’ Express’ veggie burger and sweet potato fries. I’ve received wonderful cards and well wishes, some deliciously aromatic coffee and a Colts mug that lights up (people know me so well).

I also have to admit that Suckuary hasn’t been so bad this year.  It’s not necessarily that time heals all wounds, but I’m sure the distance lessens the pain some measure, but I think this year Suckuary has lost some suckiness because I battled it before it started.

First I did a detox before Christmas.  For you non-believers, ridding your body of toxins makes me feel markedly better, so much so that I will probably detox four times this year.  I recommend the whole body cleanse.  It’s natural and you will hardly notice any changes to your routine.

Second I tweaked my herbal cocktail.* It’s nothing special, but vitamins and herbs can do quite a bit to improve mood for those who struggle with keeping emotions steady in times of stress with very little, if any, side effects.  Again, non-believers can say what they want, but man-made meds’ effectiveness only lasts so long for me, if they work at all.  Plus, I am the the poster child for side effects and .03% exceptions to the rule.  I can’t say I’ve tried everything, but I’ve tried enough to know that natural supplements are the way to go if at all possible.  *As always, it’s always good to consult your doctor before tweaking anything that would be bad to tweak without consulting your doctor about said tweaking.

Those two things in combination with some time off between Christmas and New Year’s and an attitude adjustment has really helped Suckuary not suck so much.  Friday will be especially difficult and I can’t pretend it won’t be, but it is my hope that it will suck much less.  Then I’m in the home stretch.

Today was my Hitchhiker Birthday.  42 is the meaning of life, the universe, and everything, according to the book Hitchhiker’s Guide to the Galaxy by Douglas Adams.  (I highly recommend the movie if you can’t bear the thought of reading a book). This notion popped into my head one night and was part of my attitude adjustment. I decided to embrace the number 42 this year and make it my best year yet, Suckuary be damned. I have a pretty good start to the year so far, a good springboard, and I need to keep my momentum moving forward.

Now all I need to do is remember not to panic and to always carry a towel.

Posted in Yahweh's fingerprints

TEACH ME HOW TO DIE

2010 has been one of my most challenging years yet. It’s not that I think any year will be easier than the other, I just usually have some hope of a break from the snares I still struggle with.  If only I could spray some kind of teflon on my legs so when the snares come back to grab me, they would slide right off when they come a snaring.

I often feel like Gandalf in that scene in Lord of the Rings, Fellowship of the Ring, where Gandalf is fighting the Balrog and after the Balrog is falling into the depths, seemingly defeated, he reaches up and snatches Gandalf by the legs and pulls him into the abyss.

Gandalf had the right idea.  He took a stand.  He fought.  He slammed his staff down and declared, “You. Cannot. Pass!” I’ve done this myself. I’ve declared myself free by the power of the Holy Spirit that lives in me.  I walk away. I move on. Then, out of nowhere, I’m blindsighted, I’m gasping for my life, and I’m falling into the abyss again, and I want to avoid the abyss at all costs.

I think my problem is I forget that I can fight while I’m in the abyss and after the snare is defeated for good, I will emerge stronger than before.  Then I remember that to become Gandalf the White, Gandalf the Grey had to die in the abyss and dying is not the desired result of any activity to a human being.

I suppose for most how we deal with death and dying is an internal struggle between leaving what we love and know vs leaving it all behind for the mystery of eternal life.  We’ve heard the reports, read the books, and some of us have even had those brief moments where we were dying and had that glimpse of what is to come.  From what we’ve been told, heaven and eternal life is by far a better place and circumstance than the one we dwell in now.  
I know that Gandalf’s death in the abyss was symbolic of dying to self. To be greater, he had to die and be reborn. Made new. This process cost him everything but what he gained in return made all that he’d lost a distant memory.
Posted in commentary, spiritual life, Yahweh's fingerprints

THE BONFIRE OF INTOLERANCE

This week I have watched a misguided pastor in Gainesville, Florida, take the media hostage by exercising his right to his Freedom of Speech. What this man has reminded me is that Freedom of Speech is every American’s right even if that right gives an ignorant, intolerant person an opportunity to spread their ignorance. He’s also reminded me that sometimes, the freedom to shut my mouth is sometimes much more important and impactful.

Given that, I’m going to exercise my Freedom of Speech right now. 

Another freedom that Pastor Terry also, by exercising his freedom of speech, is, indeed, drawing attention to is some Christians’ double standard of Freedom of Religion. Many Christians jump on their religious soapboxes to laud their freedom as Christians to do whatever they want to in the name of God, then cry out in horror when another religion wants to exercise the same right. Freedom of Religion is freedom for ALL religions (regardless of what some may say the original intent was) and Christians in America are going to have to get over that fact.  If Christians in America feel their freedoms are being attacked, maybe, in retrospect, they might see they did that to themselves by acting as if Freedom of Religion was all about them all these years.

Some may be unwilling to say this out loud, but in our lifetime, America has ceased to be a “Christian” country.  Without going off on a tangent about the reasons this has happened, I’m going to point out one: I believe misguided, intolerant Christians exercising their Freedom of Speech are in part to blame. If someone on the journey of seeking God, continually sees these “representatives of God” spewing hate, showing up at soldier’s funerals with banners saying, “God hates fags,” and blaming earthquakes on voodoo and hurricanes on homosexuals, it’s no wonder that so many people, even if they believe in God, no longer want to have anything to do with organized religion in America.  I teeter on that abyss all the time.

We are a society driven by media, so it’s no wonder that the pastors with the microphones in their hand and the the ones with the most outrageous notions and ideas are the face of Christianity in America. The bonfire of intolerance and ignorance is burning higher each day and I cringe at the thought of it blowing up into irreparable ashes because people couldn’t exercise their right not to speak. I honestly think these people believe, again misguidedly, that God needs them to say and do all these crazy things on his behalf so they’ll see that he is…God.

I am reminded of my days in journalism class when I was challenged often by my wonderful teacher, Bonnie Shipman, to exercise my right of Freedom of Speech, but to also be prepared for the consequences of that action.

I don’t think Pastor Terry thought, when he sought to burn the Quaran, that General Petraeus and the US Secretary of Defense, Robert Gates, would be calling him, begging him to think of what the image of the Muslim’s Holy book burning being blasted throughout the Middle East would do to the safety of those overseas fighting for his right to say whatever the heck he wants in the name of God on television and in the newspaper.  I think he honestly believes he is honoring God by hosting a good old-fashioned book burning.

I don’t believe anyone will come to saving faith through this pastor’s actions. In fact, what I do think will happen are bad things. Very bad, unloving, un-Christlike things. Protests have already begun in Afghanistan. People have already been killed. The outrage has already begun and one Quaran is yet to be burned… or not burned. Stay tuned.

I can’t say I’ve never said anything stupid or hateful over the years in the name of God. For those of you who have heard me say those things or have been hurt by them, I beg your forgiveness. Those things were drawn from the well of having yet to understand that God is big enough to handle Freedom of Speech and Freedom of Religion. I think I finally have a better understanding of who God is and that what God does and does not do… is bigger than me.

I’ve learned so much from my diverse pool of friends, be they atheist, Buddhist, liberal, Jewish, Muslim, gay, straight, lesbian or a mixture of some or all of those things and more… mostly how to get along with people who don’t think or live like I do (and if you bother to get to know people, sometimes you find out they DO think like you do – amazing!). It’s a lesson I unfortunately did not learn early on in my exclusive pool of conservative, Christian only, friends. 

I think Time columnist Tim Padgett (who coined bonfire of intolerance) summed up my feelings for the week:

So what can American Christians outraged by Jones’ hatefulness do? Stop by a local mosque today and wish the people well as they celebrate ‘Id al-Fitr, the end of the holy month of Ramadan (and try one of the great sweets). Or for that matter, wish Jewish people well as they celebrate the High Holy Days that began Wednesday evening with Rosh Hashanah. But most of all, remember how lousy it felt this week when the world equated you with Terry Jones.

While Terry Jones has made me angry this week, I also need to remember his right to do and say whatever he wants is protected, even now, by the people he is setting up to be attacked because of his actions this week.  I’ve seen some comments by people wishing him ill and just take a deep breath and realize being a hater back to him isn’t a Christlike answer either.

It all boils down to this:  If I believe everything I just said, I have to be tolerant of Terry Jones.

Dang, this practicing what I preach thing sure isn’t easy, but worthwhile endeavors rarely are.