Sunday, June 27, 2010

For Instance...

It’s been almost exactly two years since I began chemo.  Five and a half years since the  reoccurrence diagnosis.  How time flies when......  Yeah, yeah.  As has been obvious by my writings, I’ve had many, many ups and downs.  Even though I’m pretty open about many of my down periods, I really only make public about 1/2, or maybe less, of the actuals lows I’ve experienced because I really don’t want to be a total downer to those who want to know what’s going on.  I’ve been told that some people have a hard time reading what I write because it’s so honest.  Oh well....  If you knew what went on in my mind, the words I’ve written wouldn’t seem so honest. 

For my writings it appears as if I’m an extravert.  GONG!!!...SO not true.  I am incredibly awkward and quite dorky in large group settings and it doesn’t seem to matter if I know the people or not.  I don’t know how to chit-chat or schmooz and I’m not charismatic.  Just stating the obvious.  What’s made an already awkward personality trait even worse is that I’ve chosen to become super public about my journey.  Oxymoron or just moron?  You decide! 

Anyway, recently I was at a birthday party for my dad.  There were about 70 people at the party and my mom told me that at least 93% of the people attending knew about me.  I knew zilch about most of them.  So, I was stared at and whispered about the ENTIRE evening.  It was a precious party but I learned a lot about being the “diseased” one that night.  I’ve been stared at while being pushed around in a wheel chair and given second glances while using a walking stick but nothing prepared me for the feelings I experienced that night.  I do pretty well being the center of attention if I’m on a stage giving a speech, but it was horribly painful to walk through a room full of people being the unintended focal point.  Especially because the looks on the faces I saw were that of pity.  I DESPISE pity. 

I learned a lot that night and sadly, it was so awkwardly painful that I was down for a good while afterward.

For instance number two...I’ve talked a lot about the physical pain I’m dealing with.  It’s virtually non-stop and often the meds don’t really help.  What I don’t talk much about is that ANY time I feel a new pain, I immediately assume it’s cancer.  As an example, for several days now, I’ve had pain in my head.  In my mind I begin believing that the pain is associated with new cancer spots and that I will once again experience the great and powerful Gamma Knife.  Will this be checked out?  For sure.  But my point is that I can have gas pains and think that I have stomach cancer.  If my knee begins to hurt, the cancer has spread to my knee joints.  When an infection doesn’t heal as quickly as it once did, the cancer has spread to that area.  Point gotten?  The chronic pain/new pain is a huge downer and a huge cause of festering lies. 

I could begin an entire new paragraph with the concerns I’ve had about radiation and pain pill side effects but I won’t.  Or am I coughing because there’s cancer in my lungs or because I just needed to cough.  Or is the hair in my comb excess loss or the normal amount for someone my age.  Or, what about...

For instance number matter how much I understand what I’m experiencing and no matter who says otherwise, I have MASSIVE guilt about the ways I’ve failed my boys and my husband during this journey.  Most specifically the last two years.  There have been many days when I have not been able to get out of bed.  The boys are left to parent themselves (until Reed comes home) and to make sure Elijah doesn’t destroy all that comes in his path.  I know they will all survive from this but I get huge joy from being a mom so this crushes me on so many levels.  I also know that all moms suffer from “mom guilt” but this is my version of it.  My reality of this failure has caused an immense amount of grief for me.  Plus, it’s time I can never get back.  It’s an awful feeling.

But I would have to say the biggest downer of the moment is that I’ve lost my focus on the person who’s gotten me through everything up until this day...Jesus.  As the cancer has refused to leave my body, my ability to believe in the promise of complete healing becomes harder and harder.  I’ve lost focus and literally feel like I’m on life support doing what it takes to survive each day.  I am numb in so many ways but mostly I’ve become numb spiritually.  I believe this is a part of my “life support/survival mode”...a defense mechanism if you will. 

This journey has had many, many highs and lows and I am emotionally exhausted.  I have inadvertently “protected” myself by going numb. Being numb protects me from feeling the emotions of the extremes.  Unfortunately, this defense mechanism affects all aspects of my life.  So, between the numbness, the constant fatigue, the chronic pain, and the frustration of dealing with this for SOOOO long my focus on God has been derailed. 

Tonight I believe the promise but there have been many, many days when I’m lying in bed tormented by pain, nausea and flat out lies that I’ve wished I was in Heaven.

I have been broken in so many ways during this journey and have experienced an abundance of powerful emotional healing so it’s definitely not all bad but the reality is, there is no date of completion for me.  No end in sight.  This fact alone makes waking up each day and getting out of bed a challenge.  Sometimes it’s just hard to face the day.  I am not down tonight and am not intentionally being morbid.  Just giving another picture into the day-to-day of my life.  I hope you will understand. 

Numbness is great for surgery but I really want to feel again.  I know I will someday because every once in a while, God puts someone literally in my path that, just by the sight of them, I tear up with emotion.  I know that if I speak to them for too long, I will cry.  This happened this morning.  I quickly said “hello” to this person in the halls of church, gave him a hug and a brief update, and then told him to get a complete update from Reed.  I KNEW that if I stayed and talked with him, I would be a tearful mess and I just couldn’t go there in such a public place.

And I also know I will feel someday because, ALL WEEK, God has been telling me that “I will not die; instead, I will live to tell what the Lord has done.” Psalm 118:17 NLT 

I must believe...

Ps...On a totally different and somewhat silly note, if you’ve signed up to receive my blog updates via email, please make sure you reply to the confirmation email which may have been sent to your junk email.  If you don't, you will not receive them.  Thanks so much.

Friday, June 4, 2010

A Comedy of Errors?

Or just a slew of dumb decisions?

The Saturday before Easter (April 10), like a host of women around America, I got a pedicure to enhance the beauty of my Easter outfit.  Or at least to make my toes look better.  A few days later...or maybe it was a week...I noticed that one of the toes on my left foot was red, swollen, and painful.  Oh yes, oh was infected.  I’ve never had an infection from a pedicure before so I was a little thrown. 

I took care of it like I have all the infections Ben’s had over the years. Of course, I was more disciplined with him than I was myself.  I was noticing a trend though...healing would begin to occur then I’d wear closed toe shoes and the infection would get worse.  When I’d go in for treatment, the infection would get worse. Chemo = low white blood cell count = infection that won’t go away. Easy peasy controlling the closed toe shoe issue - flip flops!! But I couldn’t control the chemo treatments.  So, I put away my cute boots and converse and wore my cute flip flops even though it was still chilly out.  I just put on an extra layer. 

Then things got worse...

Our family has been doing a ton of yard work recently.  I mean a TON!!!  On May 22 we were plowing through loads of pruning and general clean up.  I had my gardening shoes on but after several hours of yard work, I HAD to take them off.  My infected toe was really bugging me.  The moisture and heat in the closed toe shoe was a bad combination.  So, I took my shoes off. 

Oooh...the moist grass and mud between my toes.  It felt so good.  So I continued pruning...and climbing up and down the retaining wall.  

I was using small hand pruners placing them in the pocket of my gardening jacket when they weren’t needed.  Seemed to be working out just fine until that one time when the pruners slipped out of my pocket, blades open, landing in the soft spot between my big toe and the next toe - on my left foot. OUCH!! Literally the blade went into that soft area and left a deep cut.  To make things even more interesting is that the blades were rusted and I’m allergic to the tetanus shot.  So, now I had an infected toe and a deep cut all on the same foot. 

I wasn’t very concerned with the severity of the cut but I was concerned about the rusty blade.  The only thing that was going through my head was “Seriously?  The pruners couldn’t have dropped out while I had my shoes on?”  I know the entire thing was my fault but I still couldn’t believe it had actually happened and that I might have to deal with the bigger issue of tetanus.

I cleaned the cut, bandaged it really well and stopped gardening for the day. That’s when I realized I now couldn’t wear flip flops without some serious pain.  No flip flops?  No closed toe shoes?  And we were getting ready to leave for an 8 day vacation to San Francisco. 

Oh...the day I stabbed my foot...for some super lame reason, I opted not to wear gardening gloves.  Somehow, I ended up with a cut underneath the nail of my right thumb.  Within a day, that cut became infected.  Gotta love chemo.  I now had an infected toe an infected thumb and a deep cut in between my toes.  I was a mess. 

Before we left for San Francisco, I bought some special but not so cute walking shoes that allowed my infected toe to breathe and my cut to be bandaged.  I really didn’t care for how they looked but I did enjoy how they felt.  But, they were new and we all know it’s not the smartest thing to wear new shoes when walking blocks and blocks and blocks up and down hills.

After a couple of days of walking in the city, a toe on my right foot started hurting.  No blisters or cuts just a strangely intense sore toe.  So, I decided to wear a new pair of really cute shoes that I just bought in San Francisco.  I knew I was taking a risk but they felt so much better on my feet than my “walking shoes” that I felt it was the lesser of the two evils.  That is, until late evening when I ended up with a shredded skin blister-like thing on my right foot.

Are you keeping up?  Here’s the tally: left foot...infected toe, really bad cut.  Right foot...strangely intense sore toe, shredded skin blister-like thing.  Right hand (dominant)...infected SUPER SORE thumb.  I couldn’t wear any type of shoe without bandages.  I went to San Francisco with an entire box of band-aids and came home with 8.  The good news though is that my cut was healing really nicely (no tetanus) and my infected thumb was doing much better and still is.  My infected toe and blister? Not so much.

Now, I’ve made it incredibly clear that I wasn’t ready to come home from San Francisco but I was looking forward to was wearing my flip flops.  They’ve always been a friend to my feet.  I knew my bad cut had healed enough to wear them but I wasn’t counting on one small blister.  It was right in the path of the strap of my flip flop.  Ouch!  Are you kidding me??

Then...I tripped, very hard, on the cord of my son’s game catching the cord between my big toe and the next toe RIGHT on top of my cut.  SO, SO OUCH!!  But no reopened wound.

Have I talked to my doctor about any of  Why? Because...I have to figure out what shoes to wear and how many bandages I need.

Thursday, June 3, 2010

Reality Check

June 1, 2010 {Dread}

I’m sitting in our vacation rental in San Francisco for the last night of this trip.  It’s a BEAUTIFUL big flat in North Beach with comfy beds, walking distance from everything we care to do.  It’s also a block away from a cable car stop which will take us to anything else we’d care to experience in the City.  It’s been an amazing trip with lots of laughter, shopping, eating, buses, cable cars, and walking, walking, walking.  We’ve been able to see or experience nearly everything that we came for.  I am absolutely dreading going home.  I’ve never experienced this much dread heading home from vacation.  Several times I’ve not been ready but this is literal dread.  I’ve had 8 days to escape my reality and I don’t want to go back.

June 2, 2010 {Re-entry...the drive home}

Re-entry, for most, after vacation is challenging. For me though, I’m usually quite ready to go home and shower in my own shower, sleep in my own bed, and make tea in my own tea kettle.  This is the first time I can remember re-entry being so emotionally devastating. 

As we left our flat today, I cried. As we drove around San Francisco spying out things we missed, I cried. I also experienced intense sadness because I felt I’d never return.  Real or imagined, this is how I felt. Reed and I experienced many, many life changing moments while living in the city two decades ago.  One of which was becoming a mom.  It will always and forever hold a special place in my heart.  This, however, was not the cause of my sadness.

I’ve encountered many who move to San Francisco to hide. Hide from people in their lives who don’t approve of their artistic flair, drug use, homosexual life style, or illegal alien status.  San Francisco is called a “sanctuary city” for reasons that I mostly disagree with but it’s VERY much become a sanctuary city for me. I go there to breathe again.  But this time, I didn’t want to leave...ever. I wanted to stay and hide and breathe.  To permanently escape the reminders of my reality.

The thought of going back home is completely sickening to me.  I am so very tired of my cancer reality. I have passed being “really” angry at God.  And yet, I need Him desperately.  Once again I am going through feelings of being cheated, deceived, ignored, and sometimes, spat upon.  I know that I have an amazing support system of people that love me and a God that cherishes me but at the moment, I don’t want to experience any more of my stinkin’ reality ever again in my whole entire life!!  I don’t care how much stronger I become in the process.  I’m sick of the process and I’m fairly positive I’m strong enough.

Anyway, most women I know deal with aging issues.  Wrinkles, loose skin that once was tight, graying hair, weight gain...blah, blah, blah.  We all hate it. We all wish it wouldn’t happen to us. I am, however, dealing with extra aging issues that are quite different and so very lonely.  The aging process in my body is being sped up with the continuous toxins that are being pumped into me. There are things going on that shouldn’t be happening for another ten years...literally.  Because of this, I despise having my picture taken.  All I see is an aging, sick, tired woman.  No matter how “good” I think I look when I leave the mirror, the pictures ALWAYS show this other person.  And I keep wondering who she is.  In my head I continually see how I looked a couple of years ago right before all the chemo started and it just doesn’t match up with today.  Not even close.  Parts of me are literally unrecognizable.  If I sound like I’m whining, I am.  I know that we all have our issues and nobody wants to age and I know that some of what I’m dealing with is the natural aging process and I know that I “should just be thankful I’m still alive for my family” but on top of all the aging crud (and my list would be insanely long) I’ve got the CONSTANT pain reminder, gimp hip, and deformed body part to keep me from ever being able to escape my reality.  Yes, oh yes, I’m in full whiner mode now.

This is one of the why’s of not wanting to leave San Francisco.  I have no doctors in San Francisco, no oncologist, no neurosurgeon, no wound care specialist, no nurses, no lab techs, no visible reminders other than me.  I’m not familiar with the medical facilities in four different hospital locations and two counties and I don’t know what the scanning rooms look like.  I can’t find my way to the hospital blindfolded even though I do know how to get there and that the hills leading there are VERY steep.  San Francisco has always been a place where the “real” me is cemented.  Artistically, spiritually, morally, and yes, politically.  Like I said earlier...I can breathe there differently than anywhere else.  And, I can hide.

At home, I am also surrounded by reminders in the form of people I love.  Everyone knows.  There is no anonymity. Even managers at Wahoo’s know. I also know that I wouldn’t have survived as well, up to this point, without this love and support.  And I’m finding that the closer we actually get to home (we’re about 1 hour away by car) the less I feel like hiding.

And now that I’ve been home for 1/2 an hour...I want to go back to San Francisco.