Friday, April 20, 2012

Kony 2012

So, my daughter came home several weeks ago, with a Kony 2012 bracelet she bought at school, after an assembly.  She told me about Joseph Kony, the rebel soldier in Africa, who abducts children in the night.  She told me about a youtube video and asked me to watch it.  Because I ran out of time, I never finished the video. Until today, after a student showed up at school, wearing a Kony 2012 t-shirt, and reminded me that knowing who Kony is, is very important.  So, I came home and watched the video, beginning to end.

It is truly, one of the saddest stories I have ever heard.  And sadder even, than my saddest moments.

We all have causes that are important to us.  Pets, Whales, Cancer advocacy, Orphans, the Hungry, the Poor.

I have given to several organizations throughout my life.  Not very much money, and not for very long, but enough to believe I was trying to help.  I have sent money to a hospital in Jerusalem to sponsor a young girl recovering from an accident, I have sent sent monthly care packages to an entire family in the mid-West, so poor they could barely afford food, let alone clothes, and Christmas presents, and the like.  And, I have sponsored a child in Central America.  Again, never with too much money and never for very long.  Because I, too, have financial difficulty and can't always do all I wish I could, to help others.

It has been a very long time, since I have attempted to even think about financially supporting another cause, but I think this one is important enough to try.  You see, this one is for the children, who are also the poor, and the orphaned, and also, the tormented.  If you watch the video, you will understand.

Because I am computer illiterate, I will give you the address, but if that doesn't work, I can only say - go to youtube and type in Kony 2012.  Look for the picture of the earth.  And, watch it.  It's about 1/2 hour.

Now, there are some clips that have titles to cast doubt, and I will acknowledge now, that I haven't watched those.  Obviously, if you want to, you should.  But, watch the Kony 2012 video, anyway.

Tonight (the 20th), the people behind this movement will be out in force, "spreading their word" and we are supposed to wake up to....well, their message.  I believe posters, and placards, and such.

It should be interesting.  And hopefully, helpful.

Let me know if you wake up to a message in your area.

*****So, on Sunday 4/22/12, I must admit that I haven't seen anything Kony related in my area.  I'm kind of disappointed.

Thursday, April 19, 2012

The Gifts and Curses of knowing your Life Time Line

When you hear you have cancer, you immediately think about death..  When you hear it has spread beyond your breast to your bones, your lungs, your liver, or your brain (mine is lungs), your life becomes consumed with death.  You live, waiting to die, and you wait to die for the rest of your life.  It is an unsettling place to be mentally and emotionally.  There are gifts that come with having this knowledge, and there are certainly curses.

One thing, for sure, is this.  No matter what timeline your oncologist gives you (in my case, it was pretty many years), your brain turns it into tomorrow.  You think, I am dying.  And, for me, I wanted to hide it from everyone, so as not to scare them.  But, I also wanted to shout it at everyone, so they would LOVE ME NOW, before I died "tomorrow".

I am a firm believer in, if you don't ask - you'll never know.  This sometimes leads me to ask questions that may sound rude and/or hurtful.  But, they're not meant to be.  They're meant to inform me, and I allow others to ask me those same kinds of questions, as long as they are sincere.

On the way home from my heart echo, requested by my onc(ologist), before I started chemo, I asked my father one of these hurtful questions.  You see, between the time of my first diagnosis (and supposed recovery) and my recurrence, my father (and step-mother) watched a very good friend (who had loaned me my bald caps) battle and lose her life to her own stage IV recurrence.  Her cancer was a different "strain" than mine (there are many types of breast cancer, all with different characteristics, requiring different protocols, and resulting in different prognoses).  She died just weeks before my recurrence, with my father, my step-mother, and her husband gathered by her hospital bedside.  I couldn't help thinking about her.  I couldn't help thinking I was becoming her.  And, I couldn't help thinking what it must be like for my parents to know their daughter was "dying".  So, as one of them was standing with me, surrounded by four mirror shiny walls of a hospital elevator, I asked......"Are you ready to sit in a hospital room and watch me die?"

I know.  Not such a great question to ask.  And, I know I hurt him, but that really wasn't my intention.  I just wanted to know what it must be like to feel that.  He, of course, said, "No."  And, just so you know, I have apologized several times.  I have to ask you to remember that I wasn't quite myself, as I was just beginning to deal with my own emotions about being diagnosed with stage IV cancer, and worried about dying "tomorrow".

That was two and a half years ago, and I have had several tomorrows and have several more in my future.  My oncologist did give me a rough timeline, and I admit, it is never far from my mind.  I am always, always aware of it.  I know I could be one of the lucky ones that far exceed their timeline, but I am also aware that I could be one of the unlucky few, whose cancer runs rampant long before their timeline has come to pass.  I have chosen to live as if my timeline were accurate, so as not to waste any of it.  My hope is to spend my timeline very carefully and receive some bonus years, as opposed to wasting time I think I have, only to lose it in the end.  I mean this more in the sense of quality time with those I love, and less in the sense of doing all I can, while I can - think Bucket List - although, that would be nice, too.

So anyway, back to my topic.  The gifts and curses of knowing my timeline.  My brain is foggy from treatment, so I may not even remember to list everything, but hopefully, you will get an idea of what it's like to know you are dying - even after you realize, it is not actually tomorrow.

I will list the curses first, because why end on a sad note, when I could on a happy one.

I know exactly how much time is passing and how fast and/or slow it is doing so.  When I am sleeping (which I do a lot), I know how much time I am wasting, time I could be with my family and/or friends.  When I turn down invitations to coffee, lunch, dinner, weekends camping, I know I am denying myself an opportunity to do those things and see those people that constitute part of my bucket list - yes, I do actually have one. And, I know that I may not have the time to try again later, especially as treatment side effects challenge my ability to do those things.  I don't really want my time to pass, only to realize I have turned down every opportunity to do those things, and that I have turned down too many offers to spend time with loved ones, because, as I stated earlier, that is my main concern.

My holidays are tinged with sadness.  I try to enjoy them, and to a good extent, I do enjoy them.  Yet, I am always aware that each particular holiday that passes, is one less of that holiday I have in my future.  I also worry about those milestones I may miss - graduations (You never saw a mother cry like I did at my oldest daughter Rachelle's.  I mean, I know many mothers cry, but when you think you won't be there, and then you are, I can only say it was extra special).  I worry about missing college graduations, ,marriages, grandchildren, empty nesting with my husband.  I know there are things I will never get to do - things that maybe, I wouldn't get to do anyway, but that I could, at least strive for, and hope for.

Some say I should LIVE and stop thinking about dying.  But, how do I do that, when every day involves a pill, or a blood test, or an IV drip, or a CT scan, or even just a nap.  How do I stop thinking about dying when every day, I am either too tired, or too sore, or too wired from my meds, or too queasy, or to scared?    How do I not think about cancer (and death), when I know if I make plans to do something today, it means I won't be able to do something else tomorrow - or maybe even the next day?

So, I do actually live, but I must admit, I live like I'm dying.  Because I am.  It might take a long time, and I've been reassured that it will, but it's always there.  Death.  Not like the might get hit by a bus kind of death, but an I have something that's trying to kill me kind of death.  Which does not mean that I am a frightened, crying, fetal positioned victim 24/7.  It just means I am aware.

And, being aware also has its gifts.  I know that may be hard to believe, but there really is a silver lining to every dark cloud.  Here are some of the gifts.

I have learned how very precious my family is.  Yes, we all love our husbands (or wives) and our children.  And, I am not saying I love mine more than you do.  But, I will say that I am probably more attentive to my family than most. I will gladly turn off the the tv during the most interesting part of the show to listen to my husband or children, if they want to talk to me.  Unless of course, I am watching Survivor.  Because, hey - we still need to have priorities, right?  And what an appropriate name for the only program more important than my children :)  But, truly, I do place a high value on every moment with them.  Every smile is one more I have been blessed to witness.  Every giggle fest we share (and usually, this is where I say something stupid and then laugh so hard, my kids laugh, because I am stupid) is a moment worth FREEZING, like those beautiful scenes that are etched onto little crystal stands.  It may sound corny, but these moments - our giggles, our smiles, our hugs and cuddles, have become so very precious to me.  I consider myself fortunate to have been given this heart opening knowledge.

I have also learned to NOT WASTE the time I do spend with my family.  My husband, my parents, brothers, in-laws (and friends, too).  We have all learned to really talk.  About the important things, like how much we love each other.  I think we are more tolerant and sensitive to each other.  I, for one, can forgive a cranky moment, knowing that I am probably the crankiest - and with good reason.  So, if someone seems cranky, or tired, or  not quite "with me", I am very conscious that there may be good reason for that, just as I do, when I am less than perfect company.  I think, those that love me have become very, very tolerant of my own lack of perfection.  It makes us all a little more forgiving and a little less upset about "little things".  Not that there are a lot of "little things".  I'm fortunate that my family are all really close.  I'm just saying that small stuff is really even smaller than before.

And.....I have helped a few women come to terms with their own breast cancer diagnoses.  It really is quite the experience to help a woman cry her way through her first few days of this frightening disease, just as I cried my way through my initial first few days (well, and quite a few other days, besides).

And, I have met some wonderful women, through web support groups, all struggling with breast cancer, most also stage IV, but some not.

And, on top of that, I have learned what true faith is.  I have learned to trust my life to God's plan, whatever that plan is.  It's not always easy, that's for sure.  But, my faith is always there, helping me to get up and fight one more day, and then one more, and then one more....until, one day, I find that two and a half years have passed, and I am still OK.  And, maybe one day, I will find that five years have passed, and then, maybe even ten.  But, however many years I get, they will be precious, conscious years, filled with the most important things in life - love, family, friendship, faith, hope.

Two weeks ago, I asked my onc if my cancer was responding the way she expected it to.  She smiled at me and said, "Oh, way better"!  So, for now, at least, I am going to stop counting my days and just enjoy the fact that I have them.  Now, how could I be so happy about a having a day?  That is the mystery of the gift that comes with tragedy.  That is the sliver lining in the dark cloud.

Tuesday, April 17, 2012

First Entry - What Am I Doing Here?

Although this is a big question, in the sense that we all wonder why we have been born - in this place, at this time - today, the question is really as simple as, what am I doing here, today, starting this blog, when I am computer illiterate, make too many typos to fix, and probably don't have as much to say as I think I do.  At least, maybe nothing so important that it needs to be blogged.

I suppose, it is for my own ramblings.  A place that can act as my journal, both for prayer and for contemplation.  A place where I can write down my thoughts and not lose them in the piles of clutter that is my home.  And a place where those thoughts won't get just as lost at this website or that website, because I have forgotten yet another password.  In fact, I am already having a hard time remembering the password I just made up for this blog site (as well as the name I finally chose, after being denied my first 15 choices).  Hopefully, that will all show up after I save this entry.

My main goals here, the things I will probably most focus on, are three-

1- I am struggling with how best to worship God in a manner that pleases Him.  I know there are many people who don't believe in God, and many who do but have not given their hearts to Him.  If any of those people ever visit, I just ask that they not belittle my love for God and find, silly, the struggles that I surely will be posting here.  I am passionately Catholic, which makes me passionately Christian.  I will probably write some entries that will make you question that.  For, I am truly a sinner - hence the struggles.

2- I am fighting a daily battle for my life.  Actually, I just remembered the name of this blog site - OwnMyLife45 (?)  But, you see - I don't totally own it.  Cancer has taken lease of my body.  Has become a squatter, claiming residency.  I, the landlord, do my best to evict cancer and keep it from claiming more territory than it already has.  Sometimes, I am a true warrior, as those with a life threatening illness are wont to be.  Sometimes, I am a wounded soldier, with little strength to fight or even, to cope.  And, sometimes, I am not even a soldier.  I am far from ready to give up, but I have my days, where a break in the action is almost worth the loss of ground.  My body has become enemy territory.  I know I am fluctuating between visions of losing my home - which is my body, and losing a war, and they may not completely fit together, except that the war is within my body.  I suppose I will never make a great writer, as I can not even stick to one analogy at a time.  I will probably post many entries about my cancer, for that is one topic that is always on my mind.

3- I am hoping to learn how to love my family with a truly selfless love.  I am not doing so great, at the moment.  I am trying to let them be who they are, yet form them into who I expect them to be.  I'm sure, as long as time has existed, mothers and fathers have faced this dilemma.  Especially, as my life span is slightly shortened, I wish to bring my family together, close, as a mother hen gathers her chicks, even as my children come closer to flying the nest - leaving it empty, which I crave, and which I fear.

So, I will come here sometimes, hoping to collect my thoughts and feelings.  Hoping to tell God the truth about my inability to love Him, myself, my family, my neighbor.  Hoping to help others understand what cancer does to me physically, and mentally, and emotionally, and even financially.

Some entries will be perfect.  Proof read and fixed several times over, and some will be so full of typos, so as to be nearly unreadable. It all depends on the day.  So, here goes.

What am I doing here?  Maybe I am owning my life - if just for today.

PS- I am 45 years old.