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.

The wait

This is the week of waiting.  I have no doctor appointments, no tests.  Just a mission to get as close to 100% as I can before starting chemo next week.  My right arm is at about 80% normal functionality.  Still some swelling, but in general, I am able to use it in a fairly normal way.  The left is closer to 40%, this is the side where the lymph nodes were removed.  My energy level is still way low.  I am pushing to make it through the day without a nap, so I end up dozing off in the early evening.  I know most of that is just my body healing, but I wonder how much is the absence of caffeine also, I love my coffee, but one less drug in my system is good thing.  


Wednesday it will be 4 weeks since my surgery, and 1 week until chemo begins.  A new adventure in this journey to wellness.  Since my dear friend is preceding me in her cancer treatment, I have some idea of what to expect; but our chemo "cocktails" are different and will have different side effects.  I am told there will be nausea, but they have great anti-nausea drugs these days and it should be minimal.  I'm also told I will lose my hair.  Nothing we can do about that, so hat shopping we will go.  


I am glad this week of waiting is also the week of Thanksgiving.  My daughter is home, and there is plenty of time to focus on the right things, the things we are thankful for.   I cannot yet say I am thankful for this cancer, although I do believe that some day I will look back and be grateful for the things I have taken away from this experience.  For now, I can say I am thankful for the outpouring of support, love, and prayers.  I have received so much help from so many people, I know we would not have made it through this without you all.  


I am thankful for the cards and notes of encouragement, they have come from so many friends and each day I receive one I am overcome again with a deep sense of gratitude to you all.  


I am thankful for the people who have shared their faith with me and provided their prayers; your witness strengthens my faith.


I am thankful for my job, and that I work for a company that has wonderful benefits which enable to me to have the time off which I need to recover, the insurance which is keeping me from bankrupting over the medical bills, and the salary which is allowing me to pay my bills and hire help where I need it this winter.


I am thankful for the people who are stepping up to fill the gaps I've left in my commitments at work and at church.


I am thankful I live in at a time where pretty much everything can be delivered to my door... it sure makes it easier to keep stocked in groceries and supplies.


I am thankful for my home; while I complain about the ever growing list of repairs, I know I am truly blessed to have a safe and warm home to recuperate within. 


I am thankful for laughter, especially laughter in times of stress and sadness - it is cathartic, humor really is wonderful medicine and provides a sense of "normality".  


I am thankful for my life so far - the smooth and the rocky parts.  I have become the person I am because of the people I have known, the challenges I have overcome, and because of those I am still working to overcome.  And I can honestly say, I am content.


But I am most thankful for my daughter, her love and her support, her strength, the wonderful way she thinks, her creativity and beauty, her ability to connect with people of all ages.  She is both my child and my friend.  She is my amazing gift from God.  I was blessed the day she was born as I have been every day since.   

comments fixed

It came to my attention that some viewers were prevented from adding comments.  Sorry about that, settings have been corrected.


post script 12.23.11 - if you subscribe via email, the easiest way to add comments is by clicking the title, this will take to to the actual post page where you will be able to comment at the bottom of the blog post.  "Replying" to subscription emails generates emails that go back to google blogger and not directly to me.  Sorry for any confusion.

The oak and the maple

My "set up" at home is a reclining chair in the living room with a clear view of the maple tree in my front yard.  It's autumn and when I headed in for surgery the leaves were changing and falling, except on my maple.  My maple tree is one of the last trees to drop it's leaves in the neighborhood.  Every autumn, I can drive down my winding street and see yards full of leaves:  birch, elm, but mostly oak, lots of oak leaves. But as you come around the curve  there will be my maple tree, full of leaves and full of color.  Even now, mid-November and after days of heavy winds, there are still yellow leaves clinging to the bottom branches.

When I looked at that maple tree I thought of the symbolism.  This tree is hanging on longer than any other tree.  It boasts of beautiful colors, which it hangs on to until the last possible moment, and only once winter is truly upon it, does it relinquish its leaves.  I want to be like that tree, holding on, fighting until the last leaf drops.... or do I?

I think about the oak.  It grows taller and stronger than the other trees.  When the strong wind comes, its roots are deep and it holds on, firmly planted in a strong foundation.  Branches may fall, but the tree stands.  When the seasons change, the oak acknowledges the change, goes with the flow and drops its leaves, then moves forward.  It may not be the most beautiful site, but it is as ready for the winter as it will be for the spring that inevitably comes on the winter's heels.  The oak doesn't hold onto the little things.

So which one will I be, an oak or a maple?  I already know, that like the oak, I have deep roots.  Grounded in a foundation of faith and family, they've been growing for 47 years and with every event in our lives, good or bad, they've taken deeper root.  But, like the maple, I find it's easy to get caught up in the little things, and forget to let go.

Someone once said to me, "what doesn't kill you, makes you stronger; but then it kills you".  I laughed when I heard this faux-cynicism, but now that I think of it, there's a tone of truth.  Focusing on the "leaves" only gives the appearance of making us stronger.  And focusing on the "leaves" prevents me from focusing on the things that will make me stronger - my "roots".   So, I have to remind myself to focus on the things that strengthen my roots, and not the things in life that come and go - the "leaves" if you will.  Because a lifetime of focusing on the leaves will weaken my roots, and weak roots, make even a slight breeze feel like a tornado.

So I will strive to be an oak, and let the leaves of life fall where they may.

The warriors

The more I learn about breast cancer the more I think the term "survivor" seems odd.  I like Ford's Warriors in Pink campaign and the reminder that this is an ongoing battle for the women that have been diagnosed with breast cancer.  And so, it is those individuals to whom I pay tribute in this post.


I'll be honest, when I was first diagnosed the first person I thought of was the childhood friend I had lost the year before.  But then I started to think about "J", a friend at church who was diagnosed years ago when our daughters were in still elementary school.  She is fabulous and has provided support and is person I know I can reach out to at a moments notice for information and guidance.  At there are more at church.  "K" - who is one of the strongest women I know and whom I would never have known had breast cancer except that she was one of many people I was pointed to as resources from my church who had breast cancer and kicked it to the curb.  


At work there were more warriors, and there are friends in my community and friends of friends who reached out with offers of help, support, experience and love.   1 in 8 equates to a lot of warriors.


What is it about being a warrior that makes these women so special; that makes them wear pink and walk for 3 days or even just 5k?  What makes them speak out and continue to bring attention to this disease?  Or silently move about their life, keeping the waters calm and the path clear for their family, quiet heroines in the battle?  


I think it's just the fact that they are focused on moving forward with life, of battling and surviving and moving forward.  And because breast cancer is by far the leading cancer in women, and second only to prostate cancer in the combined population (btw - prostate cancer is associated to the BRCA gene also), so we hear about breast cancer more.


But cancer is cancer; and warriors are warriors.  And my dear friend who is battling colon cancer right now, she is a warrior.  And my daughter, who takes this journey with me, she is a warrior.  


And cancer is personal.  We approach our diagnoses different.  Some want information and  as much knowledge as they can get, others want normality and to move beyond with as little thought to their cancer as possible.  There is no right way, but there are plenty of warriors out there who set amazing examples which we can learn from and follow.  


And follow we do, because more people survive cancer than don't; and survival rates are increasing and treatment is improving and research is gaining more and more information. And even the statistics they give me today on what the chances are of surviving for 10 years are based on people who had a diagnosis 10 or more years ago, and didn't have the advantage of today's treatments and research.  


So call me a warrior, because I will continue to battle for a cure long after I am cured.
And I will survive.  
que: Gloria Gaynor :)


post script:  If you are a warrior I would love to hear from you, please add a comment or drop me a note.

The good, the bad and the ugly

It seems that each step along the way has yielded both good and not so good news.  
"You have cancer, but the good news is we think we've caught it early".  
"Your cancer is a grade 2 moderately aggressive cancer, but the good news is it's not grade 3 which is the most aggressive."  
"Your cancer was in one of the lymph nodes, but the good news is it wasn't in any of the other 9 we removed".
"You have the breast cancer gene, but the good news is only one of your "copies" is positive for this mutation."


I have the breast cancer gene, known as BRCA.  This was my worst fear, because this means there is a chance I have passed this gene onto my daughter.  What is amazing though is that this testing exists and is there to help us put preventive measures in place.  

Only 10% of all breast cancers are the result of carrying this BRCA mutated gene, but when you have the BRCA mutated gene your chances of getting breast cancer are extremely high.  A company in Utah has figured out how to "read" the BRCA genes and identify any abnormalities within them.  It's truly amazing, to identify a gene, and figure out how to "read" the dna string containing volumes of information, and identify when something, anything, is out of place.  And then, to do something with that knowledge.  If we just "know" that does nothing to reduce the risk; but women identified as carrying a faulty BRCA gene, who do not yet have cancer, are put on a more aggressive screening schedule and approach, beginning at age 25 or earlier if warranted.  MRI is used versus mammograms alone, making it more likely that the breast cancer will be detected early on.  And catching cancer early is the key to survival.  

This is the good.

When I was in high school, the mother of one of my friends developed breast cancer.  Her cancer later metastasized and by the time we graduated she had died.  20 years later, her daughter, my friend, had breast cancer.  There was no genetic testing, no "early detection" rituals beyond sending her in for mammograms at a younger age.  Like me though, she had extremely dense tissue and so mammograms are rarely sufficient for detecting the cancer early.  I was luckier than her, and my cancer was caught early.  She went in for a lump on her breast, they did a mammogram and didn't see anything to be worried about.  She went back in, and back in, and back in... finally she insisted on further testing and they found the cancer.  30 days after finally hitting the 5 year mark and being told she was in remission, the cancer reappeared.  Last year, my friend died; and I wonder if she had had the advantage of genetic testing, and the choices that avails us of, if she would be around today.


And then I think about the choices she would have to make; like whether to do a preemptive mastectomy or hysterectomy, whether to use oral contraceptives, which can increase your chances of breast cancer, but reduce your chances of ovarian cancer.  Is ignorance bliss, or is bliss, when 1 in 8 women will develop breast cancer, just ignorance?   


Each person receives 2 copies of this gene, one from each parent, and it only takes a single faulty version to increase the cancer risk.  Right now, with no further testing, we know that my daughter has a 50% chance of having inherited this faulty gene from me.  And there is breast cancer within her father's family too.  


This is the bad.  


So there are decisions to make.  For me the decisions are easy.  With the faulty BRCA gene, my chances are also increased for developing ovarian cancer, so a full hysterectomy will be in order.  The question is whether or not we do this before chemo or after chemo.  More tests to determine the risk of waiting will drive that decision for me. 


For my daughter there are also decisions: to test or not to test; who to test; what to do if the results are positive.  The hospital has a straight-forward policy, partially based on your psychological health and partially based on the insurance and cost implications.  Insurance may or may not pay for the testing I have already undergone.  With no medical history (I am adopted with no birth family medical information), and already having a breast cancer diagnosis, the only option was a full DNA "read"; about $4000.  For my daughter it is possible for them to test just for the specific mutation that I may have passed on.  This is relatively inexpensive versus the full DNA translation, because they know exactly where in the string to jump to and what to look for.  A few hundred dollars and we have our answer, at least for the gene she received from me.


So why is this test so expensive and exclusive?  Because the firm in Utah that identified and mapped the gene has secured a patent for their findings which makes it impossible for other research firms or hospitals to use the information.  A suit was brought against them, in an effort to overturn the patent rights, but has been rejected.  It is moving up through the courts and will eventually land itself in the supreme court.  


How any company can claim the right to the information contained in a DNA string that is currently in my body is beyond me.  Surely, if possession is 9 tenths of the law, then women with breast cancer would "own" the right to have the hospital of their choice "read" the DNA sequence within their body.  I am appalled that a corporation is allowed to put it's own interests ahead of the common good, basically holding hostage the information that could help detect future cancer risk in many women.   If this was information that would lead to the prevention of a probable bombing or germ "warfare", I have no doubt that the government would step in and seize the information for the public good.  So what's the hang-up? 


Let's run the numbers.  There are over 312 million people in the US, if we figure that 1 in 8 women will be diagnosed with breast cancer, and of those 10% will be caused by the BRCA mutation, that's 1,984,902 women currently in the US population that, in their lifetime, will have breast cancer that could be detected through this testing and who are at risk without it.  


1,984,902.  That's more than 3 times the total casualties of WW1, WW2, the Korean and Vietnam combined.


And that is the ugly.  
                                     Want to read more on the lawsuit?  NY Times article

home again home again jiggity jig

I've lost about 80% of my memory of the week following my return home.  My migraine induced seizures bring about short term memory loss and fatigue.  What I do recall is the faces of the wonderful people who took turns caring for me, and the continued presence of my wonderful daughter.

The return home began with a near immediate rejection of my body of the pain medication, followed shortly after by the start of seizures.  By Tuesday I was back in the doctor, on a new antibiotic which worked much better, and on over-the-counter Tylenol for the surgery pain and headache.  Early Thursday morning brought a new development with evidence of some significant bleeding coming from my sinus.  I talked to multiple doctors and the consensus was a trip to the ER for a head scan.  Despite my better judgement, and the advice of prior physicians to never go to the ER when I was having seizures (for fear they give me anti-epilepsy drugs, which in me actually increase the seizures), I headed to the ER with the help of a friend.

24 hours later, after an overnight stay, the neurologist arrived and pronounced the triumphant good news that I didn't have epilepsy.  Of course, we already knew this and I explained to her that I had told the ER doctor that immediately, gave him my medical background and migraine seizure diagnosis from the Mayo Clinic, and, asked to have only the bleeding and the headache treated which would put an end to the seizures.  She informed me that they had, in fact, given me anti-seizure drugs in the ER, part of their "headache cocktail".  This explained my lack of consciousness for most of the last 24 hours.  After answering questions from my daughter and friends, the neurologist left, looking a little bemused but encouraging me to connect with their headache clinic and informing us she would send in someone to look at the sinus.  Within 30 minutes a different doctor arrived, announced the earlier CAT scan was clear, took a quick look at my sinus and stated I had evidence of a prolonged bleed, most likely caused from the oxygen during surgery and dry air at the hospital.   He sent me home with directions on how to prevent and treat any future problems.

I arrived home Friday afternoon, under the care of my cousin and still with a pronounced headache, fighting off seizures, but managing to keep things at bay.  On Saturday, my wonderful friend and massage therapist arrived and worked to relieve the stress and tension in my head, neck, and back, and the swelling in my arm.  The result?   Relief.  No headache.  No seizure battling.  Peace.  After a short evening relapse, quickly solved, I was now headache free and feeling more myself than I had in a week.

My memories are spotty, but my heart is full.  Despite the darkness and nightmares that fill my sleep while I am fighting through the migraine seizures, my memories will always remain of the faces of my friends and family.  My daughter, writing and reviewing care instructions with each person arriving for the first "shift" of the day; and the last beautiful, calming, angelic face I saw before I closed my eyes to sleep at night.  My many friends sitting with me, caring for me, watching over me and caring for my daughter.  Friends from church, work, neighborhood.  Dear friends I've known for many years, and those I've more recently become acquainted with.  The goodness of people, their willingness to help and support us is evidence to me of God's divine love.

The hospital, the surgery and the smiley doctor.

On 10.26 I went in for my bi-lateral mastectomy.  We arrived at 11 am, my daughter and my brother-in-law and sister-in-law.  Friends arrived shortly after to support us and after they brought me back to be "prepped" my family and friends were brought in to wait with me for my 1pm surgery.  An hour delay, and we were on our way.   I'm amazed at how many times my wrist band was scanned and I was asked to confirm my identity.  I'm so glad they do that, but it made me think that there must have been a pretty good reason they put the process and technology in place, and if I think about it too much it freaks me out.  


When I walked into the operating room I recall saying, "it's a lot bigger on TV".  The room was small, cool with a lot of stainless steel and light.  I laid down, and was out like a light within seconds.   I don't recall waking, but I do know my daughter was by my side immediately and her face is the constant in my memories.  She slept in those semi-comfortable reclining hospital chairs, and we talked in the middle of the night.  And for the first time, I see it.  She has grown up, a woman - strong, capable, amazing.  An incredibly intelligent and beautiful woman.  


The next two days are spotty in my memory, but on Friday the release process began.  I had been up, walking the hallways with my IV stand, eating normal food and feeling good except a headache that had started.  "The smiley doctor" (so dubbed by my family and friends) came in first to look at me and clear me for release.  He asked if I had "looked" yet and when I replied that I hadn't, he gave me a great piece of advice - "look".  Women who look, become comfortable early with their surgery site do better emotionally and physically.  So I looked.


I was surprised to see it appeared I had some breast tissue left, but soon realized that the effect was due to the expanders placed during the surgery to initiate the reconstruction.  There are multiple incisions on the left side because of the lymph node removal and this this is the memory trigger - the cancer is in the lymph nodes.   I'm no longer concerned about how I look and want to know - how much?  How many lymph nodes are affected?  We have to wait for the general surgeon for that answer.  


Many people come and go over the next hours, as we wait for the general surgeon to make his rounds.  At one point, my phone rings and it is my case worker from the Jane Brattain center calling to check on me.  I tell her I am good, heading home today, but am anxious -waiting to hear on the lymph nodes.  She tells me she has that information if I want it and of course, I do.  The news is good - just one lymph node.  They took 2 "sentinel" lymph nodes (these are the first nodes from which lymphatic fluid flow from the cancer site); one had cancer one did not.  So they removed the first "tier" - the next stops in the lymphatic drainage - another 8 nodes.  No cancer in any of those.  It's not the best case, but it's pretty close.  


A short while later, the general surgeon comes in; he clears me for release.  And as my family prepares me to head out, my pastor and friend, Monica, arrives with the most beautiful prayer shawl knit for me by our church's prayer shawl ministry.  She prays with us all, gives me a hug and within a few minutes I am out the door - on my way home - ready for my speedy recovery.

Hi ho hi ho it's not to work i go....

I had originally thought I'd work up until surgery, but quickly realized the fallacy in that - no way was my mind going to be focused enough, not to mention the endless phone calls and the medical appointments: chest x-rays, blood work-up, eegs and pre-op exams.  Then there is the "babysitting" to coordinate - that's for me.  It's one thing to ask a friend to pick you up some soup, or swing by and let the dog out.  It's an entirely different scenario to ask them to take hours out of their day to hang out and help with all the little things you aren't even sure are going to come up.  Being a slightly (smirk) independent person the idea of requesting assistance is difficult at best, even with the influx of offers to help.  And there have been many offers.

Of all the things that have surprised me, this has been one of the biggest.  The number of people who have reached out and offered help, of any kind.  Driving, or cooking or just being there.  I am humbled by the kindness and willingness of others to help.  How truly blessed we are.

October 21 - an (almost) clean house

I must be "nesting".  They said I would go through this when I was pregnant, but I didn't.  Now though, I am finding it extremely cathartic and beneficial to keep busy. Tiring, but helpful.  I have lists of things that need to be in place before I go into surgery next Wednesday, and having my house in sufficient shape to accept visitors is right at the top of the list.  


This house has been a disaster area for years now.  It seems every time I started to make progress on improving and organizing something significant happened.  This time, however, the order is reversed:  something significant happened and now I'm making progress.  And, after moving 50 years of accumulated possessions for my parents 6 times, I have a new motto:  "Toss it."  Simple enough.  No place to put it?  Toss it.  Haven't used it in the last year?  Toss it.  Can't remember who those people are in the picture?  Toss it.  (Okay, so this one doesn't apply to people in old black & white photos from the early 1900's, but anyone else is fair game.)  


The "toss it" motto is making my life a lot easier and allowing me to make significant progress quickly, which gets me thinking - should I be applying this to other aspects of my life?  What other things are cluttering my life which need to get tossed?  What things should be dusted off an put on display?  I find that the things that matter to me are more evident now that I have tossed a few things.  The mantel is neatly lined with photos of my wonderful daughter, some pottery she made me, a small sculpture from a friend and a beautiful wood carving from the young woman we sponsor in Uganda.  The walls are beginning to be decorated mainly with the art work of family and friends.  One of a kind pieces that remind me of them. And at the top of a bookcase stands an old wooden cross.   


The clutter is going away and I can see more clearly what matters most.

October 14

October 14, my daughter turned 18!  
She is already an amazing young woman, strong, intelligent, and beautiful.  She has gone through a lot over the last 18 years, and she knows we are headed into another obstacle course. This one we will navigate together.  


When she was 6 years old I had sinus surgery for the second time.  After a day surgery and a night at my parents, I returned to our town home.  She and I had set up the ground floor living room to accommodate sleeping for the next few days, as I was under orders to not climb the stairs to our bedrooms.  She had spent the day prior with her Dad and grandma, and as I settled in she came through the door dressed in a nurse costume and toting chicken soup that she and "pop-pop" had made for us, and some cookies to boot!  She was so cute, and also so serious about her responsibilities and taking care of me.  For dinner she heated the soup in the microwave, and wouldn't let me lift a finger.  I remember thinking then what an amazing young lady she was and now  12 years later she is even more wonderful than I could ever have imagined.  


I spent the day at the Mayo clinic, while Kate spent the day at school.  We had picked up bagels for her first hour class and I had dropped her at her Dad's the night before.  At 5 o'clock in the morning, I left my house.  First stop was picking up my friend, Doreen, who had offered to come along with me, even though it meant being up early enough to drive to Rochester and make a 730 am checkin.  Mayo was great, and their second opinion gave me confidence in my treatment decision.  When we returned home I wanted to spend the rest of the day, and the next, "cancer free".  It was my daughter's birthday and she deserved to have a light-hearted day free of "sick talk".  Then on Sunday, we discussed what I had learned and we agreed on Park Nicollet/Methodist for the treatment.  Finally, a plan we can start working.


  

October 7th

Prologue, part 2:

On October 7th I wrote this on my Facebook wall:  

3 weeks ago I went in for my annual mammogram

2 weeks ago I was called back in for additional images 
1 week ago I had a biopsy 
Today I have breast cancer

An annual mammogram.  I had them every year.  Some years I went early because I had felt a lump, and there had been many lumps.  Many years they called me back for additional images after the initial mammogram:  ultrasounds, more mammograms.  This year, it was additional mammogram images.  I wasn't worried - I hadn't even felt a lump.   Then came the biopsy, but I had friends and co-workers who came out clean.  I was only a little worried.

On October 4th I was at work, dashing between meeting as usual, and swinging through the cafe to refill my coffee cup - my "Amy's" mug from Caribou commemorating breast cancer awareness month.  My phone rang and I knew.  I have breast cancer.  breast cancer.  Okay, now what -

An MRI on Oct 5, a visit with the surgeon on Oct 6, a decision on Oct 7:  Bi-lateral mastectomy.  

The most frustrating part of this whole thing for me is that no one will tell you what the best course of action is.  The surgeon, the oncologist, the plastic surgeon, the nurses.  If one more person says to me "it's a very personal decision" I think I'm going to lose it.  I want to scream they are just boobs, fatty tissue - if it were on my hips you wouldn't be telling me it was a "personal decision".  If I was a man you wouldn't be telling me "it's a personal decision".  You would be telling me - "let's get that cancer out of you and then just for good measure let's zap that sucker."   The last thing I need to hear is "it's a personal decision."  I want facts.  Statistics.  Guaranteed return on investment.  

So I go into "business mode":  Give me the data, I know I won't have all the information, but I will have sufficient information to make an educated decision, which is a far cry better than "it's a personal decision."   I run two organizations in parallel, they are both good:  Mayo Clinic Rochester and Park Nicollet/Methodist.  Each has it's trade offs, but in the end I select PN/M because they are able to get me in sooner, they are closer to home for family and follow up, I instinctively trust my oncologist and, luck of the draw, I was selected for some kind of "medical review" and my case was reviewed by the entire oncology team.  It will go back to them if anything deviates from expectations, so I now feel I have a true team working on my behalf.  There's no "guarantee" - but i have a strategic plan.  

How it all began

Since I'm starting this blog near, but not quite at, the beginning, I figured I'd back it up.  You can consider these first post-dated blogs my "prologue":


October 1st:   
On October 1st I wrote on my FB wall:
October is Breast Cancer Awareness month. I post this ribbon in memory of Laurel Maki.  If you know someone who's life has been affected by breast cancer, join me in posting a ribbon in their honor/memory.


Laurel was my childhood friend, who I had temporarily lost touch with but had reconnected with at the beginning of her breast cancer fight.  I was on my first of many trips to the ER with my mom, she was on one of her many trips for chemo.  5 years and about 30 days later, after just celebrating her "remission" from breast cancer, they found another tumor, the cancer had metastasized.  Laurel went to our class reunion, and then her life became very private.  I've talked to other breast cancer warriors and they tell me that it's not uncommon.  Breast cancer and the fight overtake your life when you are on your second or third round. You have time for family and your "new family" - other breast cancer warriors, people would can relate to your new world.  Last year Laurel died leaving 3 boys, many friends and many memories.  She is greatly missed.