share to inspire; inspire to share

Throughout this journey I've questioned how much I'm sharing, there is something to be said for knowing when you share too much information, and a fine balance between too much and not enough.  But what keeps me going is the underlying feeling deep within me that this journey has so little to do with me, and so much to do with someone else.

Sharing one's journey can feel at times like a pity party.  "Hey, look at me, I've got cancer"  "Woo-hoo, over here, watch the goofy bald lady".  And the truth is, I write as much to help me work through the emotions and unending barrage of new information, as I do to keep my friends and family informed.  But why I chose the topics I do, all I can say is that is inspired.  

I woke up this morning to the cries of my dog needed a 5am outing.  Once up, of course, my system hit full stride and some of the side effects I battled yesterday (let's just say, that's a TMI topic), began recurring.  I tried to cuddle up in my bed after Angel returned to the house, but my brain was in full stride too.  What came into my mind was a seemingless unconnected string of thought - as is often the case when I am falling to sleep:

Why is it that no matter how much money we have, we still justify our income?  From the person that barely breaks even, to the wall street goofballs who make 6 figure incomes and are getting large bonuses, each individual sees themselves as just one person who's salary really doesn't make a difference in the bigger scheme.  Even Brad and Angellina, who's philanthropic work I do greatly admire, (and who have been on daytime TV lately, hence the pre-sleep mind rush)... I'm sure even they have rationalized their large performing salaries  as a means to a positive end.  They travel all over the world helping children; Brad's work in New Orleans is amazing, they are truly givers....  but in this economy, can one justify a 7 figure income for being in a film?  But they share their wealth, and do great good.... they share to inspire others to share.

And the thought comes full circle - sharing to inspire, that's what I'm hoping to accomplish.

Inspire others to get their routine screenings.  So many of you have written to say you have, and it makes me happy to hear each of your stories.

Inspire change in the way the medical profession hands out drugs and deals with "the exception" - which really, we all are to something.


Inspire connection - life is too short to wait for someone else to make the move, reconnect with those you've lost touch with.  Forgive and forget and move on.  Turn the other cheek.  Pick up the phone.  The hardest step is the first one and you've nothing to lose by taking it.  And after all is said and done, it won't matter who made the first move - so, let it be you. 

Inspire faith in oneself - you are who you are for a reason.  If you are not the person you want to be, identify what qualities make up the person you want to be, and start emulating those.  The only person you can change is yourself, focus inward and be happy. And let others be happy too.  We cannot change our past, but we can change our future - and we can learn.  And if all else fails, imitate the person you want to be until you become the person you know you were meant to be.

Inspire faith in God - having "control" is just a facade.  Live one day at a time, do what's in front of you, accept the peace that comes with understanding that nothing, absolutely nothing, is too great for God; and nothing, absolutely nothing is simple enough for us to truly understand all the broader implications. 

And share... your story, your life, your love.  Because your sharing is what inspires me.  


Dedicated to my Guardian Angels - you know who you are.

learning to drive again

I'm learning to drive again.              
Okay, not literally, but figuratively  


As we move through this experience, I'm learning to do things differently.  I'm learning to coach, versus teach; say "I love you" more, and "I'm sorry" less; focus on the most important things in life versus the most frequent and in general, change the way I do things.


And it's not because I'm afraid I might die, in fact, the exact opposite.  It's because I know I'm going to live, and I do not want to waste anymore time living the the unimportant things.    


My daughter will leave for college in less than a year, and I want to make these next 9 months pleasant, memorable, and a continuation of trying to set a good example of what living a life of faith and love is all about.  There is nothing like time on your hands to make you see clearly the things that life is not about; even when you thought you had it all down already.  


Leave it to God to show  you when you're not so wrapped up in a bow as you thought you were.  I'm more of a gift bag.


Sitting still used to be something I was good at.  In fact, you might say I had perfected the art.  I would relax by sitting and reading, doing Sudoku or watching a good movie, or TV.  Today, it's just the opposite.  One of the side effects I'm having is dehydration, which, among other things, causes "fussiness" (Mayo Clinic's word, not mine, but I do so love that word!)  So sitting still is a challenge, even to write a blog.  


Here's how it works... 
Chemo day, feeling okay after chemo, able to be semi-normal but waiting for the next thing.  C+1, tired, tired, tired.  The anti-nausea drugs and onset of dehydration make me sleepy.  So, I sleep.  And all the sleeping contributes to the "fussiness" that creeps in a day or two later.  So I'm learning that, just because I'm sleepy, just because I'm trying to "relax", doesn't mean I should sit, rest or sleep.  It means I should get up and get moving... and generate energy.  Learning.


Qi Gong is my new attempt at "relaxing" while moving.  I "stumbled" on the PBS episode of Qi Gong for beginners and found it amazingly relaxing while moving, so I take it as a sign of a need to re-learn how to relax.  I've order a DVD so I can learn Qi Gong and learn to relax while moving.


And then there's the little things.  Prior to the last few years, my life was like my favorite spot on the north shore, comprised of so many little rocks, but relatively few "big" boulders.  Miles of round smooth rocks, so beautiful, so relaxing to skip across the smooth water, but rocks none the less.  Battered and beaten to perfectly smooth replicas of each other, each little rock shows the signs of having been tossed over and over again, and washed up on the shore.   That's what life was, tossing the same little rock again and again until it's rounded smooth perfection of ill-fated repetition.   Always focusing on the little things when there were beautiful big bolders to be climbed and admired and focused on.


I so worried that I would "do it wrong" that I was destined to get it wrong.  That doesn't mean I didn't get somethings right.  I once wrote about being a parent, "No matter how bad I mess things up, because I love unconditionally, I'm bound to get something right."  And loving my daughter unconditionally is definitely something I got right.  But while loving, I often focused on the wrong things and there are times when I set the wrong tone for what were "big boulders" and what are rocks.  


So for the record, time spent with family, that's a big boulder.  Time spent getting to know your aging parents and learn their history, that's a big boulder.  Time spent on faith, that's a big boulder.  Career, stress, housecleaning and anything that's about making an impression and not making a life -those are the rocks.   And it's time for me to stop tossing rocks and start focusing on the boulders that make life worth living.


So next time I go to the north shore, I will walk along the shore with the warm round rocks under my feet, and I will head straight for the big boulders and enjoy the sound of the water and the voice of my daughter.

our favorite spot, today

hair today, gone tomorrow

Well, we finally hit that point.  We've talked surgery, chemo, breasts and now... hair.
It's coming out in clumps, so I've taken to shampooing at least once a day to wash out the loose strands.  A few days back we shaved it down to military length, interesting look on me.  No offense to my gay and lesbian friends, I've never been a real "girly" girl, but this is a bit "butch" for me.  I think I'll like bald better once we're there.

It doesn't happen like you think it will, either all at once, or steadily, like a person "grows" bald.  For me, my "part" is growing, which is weird. And when I went to even out the sides, holding a piece out to snip it, it just came out in my hands.  I guess, I simply imagined this happening differently, but for the life of my I can't come up with how I thought it would happen.... just different.

During the summer, I've watched as the younger boys up at our church camp line up for the annual head-shave of summer.  I now understand the appeal of doing this in the great outdoors.  The hair goes everywhere!   I also understand the appeal of shaving it all, since it just continues to fall out in bed, in the livingroom, on the stairs.  The up side for me is it is impossible to tell the difference between my hair and my dog's hair.  On the other hand, it looks like I don't even try to keep my floors clean.

The hats have started arriving.  I ordered scarves, hats, and little sleeping caps, since I'm looking at many cold weather months being relatively bald.  And I'm finding, I don't really like wearing them.  If I'm going to be bald, I'd rather just be bald.  It's kind of like the breast thing, I'm not sure it's worth the hassle right now of "faking" it.  Who knows, time will tell if I change my mind - don't be surprised if I do.  I'm learning something new about cancer and myself each step of the way.

So hair today, gone tomorrow - that's the punch line.  The good news is, it grows back and I hear more marvelously than what was there before.  Now if someone could find me a cap designed like a "magic 8 ball" , I'd be really impressed, and more so if it read "Outlook positive".

post script 122011 - if you want to see a hair progression, you can use this link to my FB album, no FB account needed:  http://www.facebook.com/media/set/?set=a.2119366339489.2105012.1105695732&type=1&l=442935ef3c

They're called boobs, Ed

It seems fitting, given the type of cancer I am battling, that at least one blog post should be devoted to the topic of breasts.  So here it goes - 


The title of this post is taken directly from the movie Erin Brockovich, and is one of the favorite movie quotes around our house.  In the movie, Erin (played by an "enhanced" Julia Roberts), is a real-life voluptuous but out-of-work mother who pushes her way into a job working for her lawyer, Ed.  Doing some simple research, she figures out that a large chemical company is responsible for an outbreak of cancer in a small community.  At the point this comical, but spot-on, observation is made, Erin is informing Ed that she intends to go to the public works department and copy the water test records.  Ed asks, "What makes you think you can just walk in there and take whatever you want?", to which Erin replies, "they're called boobs, Ed".


Cynical or accurate observation, Erin's response speaks volumes about the way our society views women's breasts.  These simple fatty tissues, common to all mammals, have been the focal point of paintings, the topic of songs and have spawned more nicknames that any other body part, by at least 10 fold.  


When used for their intended purpose, they beautifully nourish our children.  When used in other ways they can provide entry to public works records, nightclubs and occasionally the floor above the corporate glass ceiling.  It is during these later times that they become the mode of demeaning the feminine gender.  So why is it that we place so much importance on the physicality of this specific body part?


On October 7th I wrote about my frustration with the medical professionals' willingness to give me clear direction on what to do about my diagnosis, and the continued emphasis on this being a "personal decision."  If you had told me then how little I would miss my breasts I might not have believed you.  In fact, when this all started I assumed that my "pragmatic approach" would soon be overruled by some emotional attachment that I would have to the contribution my breast made on my appearance.   I won't tell you I haven't had a moment or two of sadness realizing I was losing a part of my body, but I never expected at this point in my progress to not be missing my breasts.  In fact, it's probably a good thing I didn't know I would feel this way or I may not have proceeded with the reconstruction, and that's a decision I might have regretted further down the line.  But who knows.


When you are faced with making a decision that will play a role in your likelihood of survival, that will help determine whether you face cancer once, or many times and how many times you put your family and yourself through the stress and anxiety that inevitability comes with battling this disease; then whether or not you end up a 32AA or a 36C is really not a relevant factor.


Over my life I have gone from overweight to underweight and with cup sizes that were directly proportional to my body fat index. When I look at our society's obsession with "thin", and many of the beautiful and successful actresses today who are  relatively un-endowed, it's odd to think that we should also be so obsessed with breasts, which are traditionally sized in direct proportion to our weight.  


It's also paradoxical that in a time when we are working so hard to teach our young women about positive and healthy body image, when companies like Dove are running successful ad campaigns focused on real beauty and real body types and when high profile women speak openly about past battles with eating disorders and other health issues related to body image in order to bring a voice and a consciousness to the serious risk facing our young girls today, that one of the most anticipated and highly rated television shows should be nothing more than a bunch of over-endowed, under-body-fat young women marching around for an hour in skimpy lingerie and talking about how it has been a life-long dream for then to achieve the high honor of being "an angel".  


Seriously?


So what drives this fascination with breasts?  We try to blame the media, advertising, television and movies; but individuals in those fields will tell you they only repeat what sells, and we are the buyers.  We try to blame the opposite sex, but when asked individually you can see that there are as many different views across both sexes of what is "desirable" as there are sizes and shapes of breasts.  We blame evolution - it is instinctual to look for mates that have attributes that are most associated with good breeders, those that can help us move forward our gene pool, but we know that our evolution itself has changed the criteria we should be looking for as a "more evolved" species.     


So where does that leave us?  I guess it leaves us as individuals, each, ironically, with a "personal decision" to make.  For me, that means I will chose to "de-emphasize" the importance of my breasts on who I am as a person.  Because I believe that by changing the way I think, and aligning my actions to those thoughts, just maybe I can create change in the world - or at least my own little corner of it.   

turning the corner

Today is Monday.  I have had 5 days of feeling relatively "normal" and it has been amazing.  I've been here before, realizing how much I take for granted the simplicity and fundamental wonderfulness of feeling just normal.  Years ago when I landed in the hospital for 10 days with migraine induced seizures, it took many weeks before I felt "normal", and the sheer joy of it was amazing.  And here I am, back at the wonderment of it all and just a little disappointed in myself for for taking it all for granted.


Last week was rough.  After chemo the Wednesday prior, and a return trip to the hospital the Thursday after for an IV to combat dehydration and a switch of one of my anti-nausea medications that I was having a poor reaction to, I was working through the typical chemo/anti-nausea drug effects of being fatigued.  Saturday came and things were getting better, but then early Sunday morning I began having a problem with a medication they had given me to try and control the migraine-seizures.  I wrote about this some on 12/4.  


The scary thing to me is how a medication, intended to alleviate anxiety and thereby (supposedly) control migraines, actually caused me to have severe depression and uncontrollable sadness and despair.  In fact, throughout this whole situation, it is the only time I have felt complete and utter sense of helplessness. 


But I went off the meds, and the cloud lifted, and I breathed a huge sigh of relief to feel... just normal.  


And that was Thursday, feeling tired but feeling normal, feeling grateful for feeling normal and feeling the need to get stuff done.  So, like the normal human I am, I went a little overboard.  A trip to Target with the help of a friend to get all the things I had run out of, or identified as something that would help with this next round of chemo.  I rested that evening, with a normal night of watching TV, having dinner and relaxing with our dog, Angel; and I awoke Friday feeling ... normal.  


And Saturday... normal.
And Sunday...normal.
And today...normal.  


I was able to visit my dad, grocery shop, go see my daughter sing in our church Christmas concert and have a wonderful evening talking with an old friend.   


And today I am doing laundry - who'd have thought doing laundry could be so wonderful.
And cooking food for the rest of the week - normal.
And watching Ellen, and even dancing along while Angel barks beside me.  


Normal. Wonderful, amazing, don't forget to appreciate it....normal.

it's not the quality of the voice, but the sincerity of the singer

I've taken to a new routine each morning.  After seeing my daughter off to school I pull out my computer and listen to one of the sunday services our church has recorded and placed online.  It's a great way to start my day, grounded in prayer and faith, and allows me to take on the day with a clear perspective of what is truly important.  As I sat listening the other day, I found myself revisiting a service I had attended earlier in the year, and my mind began to wander back to the time when I heard the sermon "live".  


Can you ever recall sitting in church when a hymn comes up, the organ begins to play, and the congregation joins in with the well know song; then inevitably someone well within ear shot is belting it out with no regard to the notes or key?  Or for those of you more likely to be in the bleachers than the pew on Sunday, have you sat at ball game when the national anthem comes up and inevitably there is the enthusiastic fan belting it out with little regard to notes or melody?      


I like to think I'm a tolerant person, but the reality is, when I hear that off-key singing, I cringe.  It's not that I expect everyone to be Andrea Bocelli, but I have difficulty keeping those negative thoughts from creeping in when what I should have be doing is focusing on the song, and what I am really there for - the experience.    


So I thought about that for a minute, and realized that those who are most likely singing with abandon are singing from their heart.  They are there, in the moment, feeling the words.  They are not there to impress, to be noticed or to be the center of attention. They are at church to worship, and praise God.  They are at the ball game singing their national anthem with pride in the country in which they live.


Jump back to the sermon of this morning, where our Pastor concludes with, "you are not what you think you are, you are what you think".  Nothing could be more true.  I may think I'm tolerant, but if my mind is intolerant, I am not.  I may think I am open-minded, but if my mind is judgmental, I am not.  


So, how to solve this?  I believe by repeating the behaviors that define the person we want to be, we create habits that can eventually change the way we think.  And when we create habits that change the way we think, our actions become sincere and we can change the world.

when you hear hoof beats, think horses, not zebras

Ockam's Razor: The simpliest answer is most often the correct answer.
A straight-forward common sense approach to most situations and one of two thoughts that pervaded my mind in the middle of the night, a source of which I believe is truly divine.

Everything is not about the chemo.

Or, to quote Freud, sometimes a cigar is just a cigar.

I awoke this morning feeling slightly nauseous, but instead of giving in to the slight anxiety I took a deep breath and reminded myself that this time of year I'm often congested and wake up with a slightly "off" stomach.  So I got up, made some tea and got moving.

As I began my day, again my stomach become upset, and (warning - tmi moment) I ended up spending the better part of the next few hours in the loo.  Again, I took pause and reminded myself that with all my food allergies, and abdominal issues, was this really all that unexpected?  Really, who knows how they "bind" all those pills I've been taken, probably with wheat or corn starch.  So, I moved on.

Later in the day some of the restlessness I've know too well over the last few days began, and a small headache came on.  But instead of reaching for the tylenol, I took another deep breath and recalled other times when I had been inactive for days how restless I became.  So I did laundry, and dishes, and bills, and other normal things.  And I felt better.

It's easy to start attributing everything to illness once someone tells you you have cancer.  But I was feeling perfectly normal before my diagnosis, so I know that not everything is about the cancer, and not everything is about the treatment.  Sometimes, the little things are just the normal things.

So, when I hear hoofbeats from how on, I'm going to think horses not zebras... and I'm going to power through.

chemo - 1 down, 7 to go

One of the side effects of the chemo I had Wednesday is blurred vision, which is frustrating because writing has become so cathartic, but now much more difficult to do.  I'm told it may improve, but may not until after treatments are over.  After just one session, I can honestly say I've never wished for time to fly by faster than I am now.  I know that I am lucky by comparison to people who have treatments daily, or for longer periods of time; but I can't help feel that the road is going to feel longer than I hoped or anticipated.  


But then again, any road worth traveling is worth the effort, and this road is my yellow brick road to the cancer-free land of Oz. 


My day started out rough, after quite a few days of feeling lethargic from the anti-nausea meds; which by the way, do the job.  I did have to go back into the hospital day after chemo for an IV saline and some new anti-nausea meds, plus a shot to increase my production of white blood cells, that was thursday.  Friday is a loss for the most part, and thanks to a good friend being by my side I was able to make it through.  Saturday was lethargy, but today was the oddest.  Beginning at 3 am I became anxious, couldn't sleep, too tired to walk, too jacked up to sit still.  It was by far the oddest and most disturbing side effect, but it seems to have worn off now at 7pm.  


It is a continued blessing to have my good friend walking down this path with me.  She told me this morning I'd start feeling better tonight, and she was right.  Although our treatments are different, there are enough similarities that she is my chemo "guru".   And I  know she has a family friend she talks with who has been there long before she or I.  Each of us finds our guru to help us through, which makes me wonder who's guru I will be.  I pray each day it is no one I know.