Thursday, January 17, 2013

Exposed


go ahead  breath in, breathe out
find a way to win the fight
go scream, go shout
somehow make it through the night
let it swallow, feel hollow
let it bleed until you're numb
you're gonna hurt, while you wallow
you'll feel the stitches come undone
fall apart and let it go
feel helpless and feel weak
wear it out, let it show
there are no words to speak
cry and shake, don't hesitate
allow it to consume
don't sleep, just lie awake
smell the smoke, breathe the fumes
if this passed without pain
if I didn't feel a thing
would I learn? 
would I gain?


Loss For Words


Maybe you can see
The tears behind my eyes
Maybe you can see through
My little white lies

Perhaps you can tell
I'm not quite the same
Perhaps it's obvious
That I have changed

It may be unclear
But you can tell I hurt
You want to say it
But you can't find the words

Even if I try real hard
I can't really hide
I want you to hear me
I want to confide

Make-up and facades
Are a front hard to keep
Underneath the front
Is a pain so deep

Something is missing
You are desperate to know
You want to hold me
You don't want to let go

Though you wonder
What you can do for me
I can't help you with that
I don't even know what I need

Though you wonder
What's causing my tears
I wish you could feel
This pain too hard to share


Friday, January 4, 2013

January 2013 Oregon


The latest with my dad:
The last chemo cycle didn’t change the amount of cancer cells in his blood.  The doctor decided to draw more blood and get a new lab result.  He’d gone two weeks without chemotherapy at that point.  The doctor also took new bone scans to see if my dad had sustained any new bone breaks.  More than a couple times over those two weeks off he felt new pains develop and suspected he’d broken another bone.  The doctor responded to that through the x-rays.
Thursday was the second treatment for his third cycle.  On our way to our room for the treatment, we bumped into the doctor.  He said the x-rays didn’t show any new fractures.  YEAH!  We have an appointment scheduled for Monday before his third treatment.  We’ll review the new lab work and discuss what approaches need to be adjusted, if any.
The pain he’s in is immense.  He’s unable to lift his arms over his head.  Walking around for extended periods of time results in not only deep fatigue, but increased pain as well.  The pain medication he’s been on since the start of his treatment has never been able to contain the pain in his bones.  Imagine having several broken ribs, a broken clavicle, and sternum and not feel any relief.
When I got here, he had a debilitating headache that was causing him to see double.  So not only did it hurt, it screwed up his vision.  Takes on an entirely new dimension of migraine for me.  I could relate to the headache, but I’ve never had a headache so strong it split my vision.
Pain management is key to the quality of life of a cancer patient.  The doctor has been incredibly proactive in gaining control of my dad’s pain.  During Monday’s appointment, we finally decided to take a different approach to that task.  We’ve changed him from morphine, round the clock, to oxycodone/oxycontin instead.  At this point, it hasn’t made any difference.  As long as he’s sitting still and supported, he’s not in pain.  But that can’t be the long-term treatment.
The doctor has encouraged him to move as much as possible.  With that goal in mind, he prescribed drugs to help mask the pain enough to accomplish realistic movement.  The doctor has also told him to work as much as he can.  That has turned out to be quite the chore.  He’s been able to work, but the physical cost has been expensive.
With two months of treatment under our belts and no advancement in pain management, the doctor suggested treating some of the affected areas with radiation therapy.  I’m not completely up to snuff on all that entails.  We’ll discuss that approach on Monday.  So far, what I’ve read about radiation for this cancer, he’ll have several treatments dispersed over several weeks.  The closest place to get the treatment is over a 90-minute drive one way.  Like I said, we don’t know if that’s going to be the next step yet.  As with all cancer treatments, radiation therapy will introduce a new string of possible side effects.
I am the only person in the house right now that can drive.  With radiation treatment possibly necessary, I’m going to be the one to drive him to and from those appointments.  The need my dad has in regards to transportation is beck and call.  If he goes to work, I need to be available to pick him up at any given moment.  So far, he’s been able to survive a shift of about 2 hours.  A couple times he’s made it longer.  But, because he has me available to pick him up whenever he wants, he can leave his work schedule very open.  Asking anyone to be willing to be that flexible in transportation arrangements is slightly unreasonable, outside of a family member.  I’m that family member.  I don’t mind at all.  It is that kind of support that brought me here in the first place.
I’ve said to my little brother, little sister, and dad that I would stay here as long as there is a need for me to be here.  That is fairly open-ended.  I came here with a carry-on bag and a return flight scheduled for a week later.  Within a couple days of being here and fully assessing the situation, it became clear to me that one week wouldn’t be long enough.  I canceled my flight and set my affairs as straight as possible with my husband and kids.
Right now, the plan for my return home doesn’t look like it’ll be sooner than this summer.  My husband is bringing Alex to me in a couple weeks and I’ll keep my little guy with me for a month or so.  I cannot describe how much I’ve missed him.  It puts a knot in my throat and stomach when I give any time to thinking about it.  I’m beyond excited to see both of them.  This is the longest I’ve ever been away from my kids.
I appreciate, so much, those of you who have expressed your care and concern.  As far as what I’m doing to take care of myself, I’m doing the best I can.  My dad generously got me a wonderful massage.  I’m still calm from that hour of physical respite.  If I were a brat, I’d ask him for one a week.  LOL!  My expectations of anyone taking care of me that way simply doesn't exist.  I seep into a cup of chai and my headphones.  I frequently write.  Knowing what I ‘need’ and making sure I have them is easy.  I have an amazing brother who frequently allows me to vent.  That helps me a lot.
My theme song is “Keep Breathing” by Ingrid Michaelson.  I can literally listen to it on repeat.  Sometimes I do.  I was telling my sister yesterday how quickly what matters to me changed.  
All the way up to Election Day, I was pretty engrossed in blog reading and news watching.  The day after election, I sang the National Anthem at a Veterans’ luncheon and went to work for my lawyer friend.  That night, I looked into my dad’s eyes via Skype as he told me he has cancer.  The next day, I was in his living room.  In that instant, all the piddley things I thought I cared so much for, slipped into obscurity.  President Who?  Popular what?  Who cares?  The zombie apocalypse could have started outside my window and all I thought was how fast can I be in Oregon.
It’s tough to be pulled equally between two very important priorities.  Being here, pains me to be away from my husband and kids.  But, if I were home with my family, I’d be tortured with not being with my dad and siblings.  I belong in both places but I’m only one person.  I know I’m where I’m supposed to be right now.
The support my husband and I have received has been amazing.  I have had very little worry about the care of my children.  Things have panned out so flawlessly it’s slightly scary.  The cautious perspective I have has made me think the pretty row of ducks in my own household is preparing me for Helter Skelter in this one.  The old adage of “God doesn’t give us anything we can’t handle” that rings with clarity.  I don’t think I could handle both houses being in chaos.  That more than likely is just the level of insanity to place me in a round rubber room.
Being thankful for small miracles…so thankful.




Wednesday, January 2, 2013

2012



The past year has been a testament to just how little control I have in my world.  There were some wonderful things that took place.  There was a lot of positive reinforcement from friends and family. For the first time in my adult life, I have reached the pinnacle of my solidarity.  I’ve hit my stride, so to speak.
2012 brought me a wonderful experience of reengaging my musical passion with the Thunder Mountain Band.  It was an absolute joy to be welcomed and wanted back in the little musical community of my hometown.  There were many times I was overwhelmed with support and appreciation for my return to the stage.  Sometimes you don’t really know how much you miss something until you are staring it right in the face.
I met some new people this past year and I look forward to the cultivation of those new bonds.  There hasn’t been a year yet that I’ve looked back on with regret when it comes to the friendships I’ve gained and lost.  This past year was a year of gaining and it has been a welcome experience.
This was the first year I have felt, from start to finish, at peace with the losses in my life.  There isn’t a day that goes by that I don’t miss my beautiful son and mother.  But what was once a painful gorge of sorrow is now a mound of new pink scar tissue.  I’m healing.  I have come to terms with the reality that I will never fully understand why they were taken from me when they were, but I have accepted they have been.  To me that was a key element to the contentment of my soul.
My husband and I have hit our stride together.  We’re in the prime of our marriage.  We have recovered from the bumps and hiccups.  We are on the same page and act as a unit.  We celebrated 15 years of marriage.  Accomplishing such a feat has been very satisfying.
The bond between my teenage daughter and me is challenged at times.  I am working hard to maintain the proper balance of mentor and friend to her.  That will exist until she’s on her own.  I accept the dynamics between a mother and her teenage daughter.  In a weird way, I’ve bonded with my mother experiencing some of the mishaps of raising a teenager.  I’ve grown a deeper respect for her, knowing fully she probably wanted to kill me a number of times.  Yet, here I am.  There’s honor in that.  HA!
2012 taught me how to be a better mother.  The intense love I have for my kids is immeasurable.  The need I have for them to be around me has grown beyond what I thought possible.  My sweet little boy is an absolute delight.  I have such a deep appreciation for the experience of raising little people.  Seeing the world through the eyes of a toddler is incredible.  I’m growing more and more excited to see what kind of man I’m raising.  But, I can wait.

When it comes to what I’ve learned about the deeper aspects of myself, the past couple of months have introduced new facets to that ever-expanding machine.  Despite the sincere acceptance of who I am and solace in the condition of my life, there’s always a lurking sense of anxiety.  Perhaps it’s because of the hands I’ve been dealt that have contributed to my emotions sort of always being on guard. 
The beginning ten months of 2012 were slightly irritating because of that feeling.  I would log in my journal how happy I am.  I would say aloud to my best friend how content I am.  Yet, at the same time, I’m waiting for the other shoe to drop.  The best way I can describe it would be to compare it to leading in a race in the last second, but knowing my opponent is only half a breath behind me.  I’m confident and paced.  I’m sure footed and oriented.  But there’s this sense of something out of my control that could throw the whole race.
As usual, the hindsight being a crisp HD image that it is, I understand why that anxiety has loomed.  Two months ago, my dad was diagnosed with cancer.  BOOM.  Opponent steps on my shoelace and I go tumbling onto the rubberized running surface.
I think it’s only because I’ve been silently waiting for something to go wrong that prepared me for the fall.  Sure, I’ve cried about this.  But, I haven’t curled up into a ball and lost control.  I have the surest grip on my emotions right now.  What is most interesting is, I’m not numb.  I’m feeling all of the emotions associated with this situation.  All of those emotions aren’t running me over, though.  This is truly a first for me.
I don’t think I could be this secure in how I’m handling this, if I hadn’t already gone through such difficult circumstances before.  I’ve said goodbye to two people in the last 4 years.  Not just friends or loved ones, my mother and my first son.
This next year intimidates me.  With the way things are shaping around my dad’s cancer, I’m very nervous about what is going to happen in the next few months.  There’s no magical storyteller popping up in her gypsy wagon ready to tell me what the future holds.
Right now, we are in a slight panic mode.  The last cycle of chemotherapy didn’t change the amount of cancer in his body.  During his two-week interim between treatments, he sustained new bone breaks.  The doctor was surprised to hear that and immediately ordered new x-rays and blood work.  He proposed radiation therapy in addition to his chemo.  He wants to maintain the current medication for at least one more cycle.  If the lab results don’t change, we’ll be looking at a more aggressive approach.
We’ll talk to the doctor about the specifics of his plan on Monday.  With each day, I’m feeling more and more certain I’m going to be staying in Oregon through the spring.  Our hope was to reach bone marrow transplantation by April/May.  That is starting to sound unrealistic. 
I’ve learned a lot about medications and multiple myeloma.  Being the information junkie that I am, it is a requirement for me to properly process all that is going on.  Fortunately, there is so much available to me that I can easily become engrossed and feeling overconfident in comprehension.  I’m not a doctor.  But I’m getting pretty savvy reading lab results, tracking symptoms, and identifying possible complications.  Having a firm understanding of what’s going on inside my dad has helped keep me from freaking out.  I ‘get’ it.  The things I don’t understand or know are the things that will keep me awake at night.
Monday will bring us answers as to the direction we’ll be taking from this point.  Until then, I’m doing the best I can to keep my dad comfortable and as pain free as the drugs he’s prescribed will make him.

I am finding it hard to find the positives in his cancer.  Sure, there are obvious things like, it could be worse.  But, I’m not that kind of thinker.  Of course it could always be worse.  But, there’s this little seed of anger that has taken root in the core of my perspective.  Seeing past anger is not easy.  I’m feeling the growth of that anger begin to take shape when I think about the effects this cancer is having on my entire family.  Why now? 
I am so grateful for a daughter and husband who have such a fantastic bond with one another.  It has been because of that bond, I’ve been able to be away as long as I have and not have to worry myself to death about the quality of their lives.  They have played the hands they were dealt with such grace.  It makes me so proud.  None of this has been easy on anyone.  But, they’re not calling me and complaining.  They are doing the best they can to support me from where they are.  It has been a blessing to have my family’s affairs in order.  My daughter understands the necessity of my absence and has accepted the responsibilities that have fallen on her.  I can’t wait to wrap my arms around her and tell her to her face how immensely proud I am of her.

I’m not going to dart through this New Year with a pair of rose-colored glasses.  I’m fully armed and suited for battle.  I’m cautiously optimistic about the things to come.  I’m going to work hard at keeping a positive attitude.  It is imperative I chose my battles appropriately.  The small stuff is growing ever smaller.  The real grit of existence is what matters.  True acceptance of the things I cannot control is being challenged, but some things are never fully achieved.  I’m not seeking perfection.  All I can ask for is resilience.   My armor is chinked, but hearty.  My weapons are handmade, but trusted.  My outlook is ahead, not behind.  These days to come will test me to the brink of destruction.  But as long as I keep a white-knuckle grip on the things I can control, I will overcome.

Here’s to you, 2012.  Thank you for a year that prepared me for the next adequately.

Mom

I miss my mother. It’s nearly constant. The more birthdays I celebrate, the closer I come to the age she was when we were closest. We spoke ...