Compassion and Cancer

So as we know, my brain cancer journey began in May, 2012. I've had four MRIs and seven rounds of chemo. God willing 5 to go--THEN it's a party! I strive every single day to remain positive, accept feedback that is affirming and hopeful. Compassion. Empathy. Faith-driven friendships, prayers and comforting warmth. Unfortunately, as in life, people (some) can only maintain a posture of caring for short bursts. That's ok... I mean honestly, who wants to be around someone who whines about their lot in life and the relationships, forged over YEARS of bonding that can't hold up to the reality of cancer? So maybe THAT's the worst part of this disease. The loss of interest and the inability to maintain a positive stance on the pain of someone not ourselves. I had blood drawn today. For some reason the place was tragically packed. Blood draws, doctor appts, tears, baldness, thinness...fear. And the noise pulls you in and holds you to it. It locks you in. And I closed my eyes and wondered if in one year "this" voice or "that" voice would mix in the voices I would hear in months to come. I wanted to run. I had to stay. It's odd... The last place you want to be is the most likely place you will find compassion. I hope that, God willing, in the years to come I do not forget compassion. Never lose the ability to consider another's pain. Life IS grand and is to be celebrated. But we owe so much more to our fellow human beings. We owe them a second glance, a whispered prayer, a thankful heart. Always remembering: "There but for the Grace of God go I." I don't owe it to anyone to apologize for my illness; for where it's brought me at this point in my life; what it's taken from me; how it's taught me more than I was ready to accept about myself. Bottom line: This is MY disease. I'll handle it my way. If you don't like how I handle the threat to my life--get on down the road and save your joy, time and energy with other like-minded swine--but by all means, do NOT get sick!! Some poor people just won't be there for the long  haul! Let's face it--sometimes we're lucky if we get through the flu without someone whining: "You're STILL sick?!" So either give me a nod, ask how things are going and MOVE ON! I'll try not to bore you with details about my fear of dying, headaches, a lost career, weakness, thinnng hair, loss of short term memory, etc., I promise! Let's just focus on the "happy" stuff!! Did you hear? Today was one of the best days of my life. I woke up.

Cancer - So much to say...

My stepdaughter told me today about an art show in town this week.  At the time, I was sitting on the floor with my four year old granddaughter.  We were having fun, going through the two boxes of CRAP (WHAT?) that culminated from my 14.5 year commitment to a job that, I believed, defined me.  (Honestly?  I still believe it defines me--I just can't take away what's happened since May 14th and, as they say: "Onward and upward." [Whatever THAT means!])  Anyway, I pulled from the box many things, explaining the significance as best I could:  the American flag that had sat on my desk in a place of prominence since the 911 attacks; a  giraffe pen someone gave me that has push levers in the back--when you press them it looks like the giraffe is boxing; the Grinch doll that I'd bought because it was a reminder of my mom's favorite Christmas movie; a Barbie, hair cut like mine, dressed kind of like I dress--brought to a Texas Hold 'em/St. Patrick's Day party at our house--see, if I placed a bet, my "friend" would stab the Barbie or twist its head or put her head in her mouth and bite Barbie's head off as a kind of voodoo talisman against my bid (buy-in was $10 and we made penny bets).  I think that particular party went down around 2004 or 2005--GREAT night.  And of course, my duck, Howard--my boss's daughter gave me Howard when she hung out with my nieces (in town from Oklahoma)--I mention these items because they were used by me and other members of our staff on occasion when markers just weren't cutting it and diversions were necessary to dry many a tear from a visiting toddler's eye.  Howard, more than anyone, soothed many a child.  My boss's daughter is now a married woman, my nieces are all grown up and life has moved onward... and upward.  Memory lane... sometimes I think I write these things so that if in the future I lose the ability to remember my life I can read my words and maybe something will "stick".  That is the most terrifying part of all of this really.  Losing those times where I "made a difference" and friends were family.  We've shared weddings, funerals, lost siblings, illnesses, watched children grow up, lost a child... I don't want to forget.  There ARE worse things than cancer.

Back to the purpose of my post.  My stepdaughter, as I said, came to tell me about an art show scheduled for Thursday--the 41 year old female artist, "Has the same kind of cancer you have."  She was diagnosed in May (as was I), but has had five surgeries since.  She is undergoing a clinical trial at MD Anderson. As a result of her surgeries, she has lost the peripheral vision in both eyes "from the left".  Her artwork, I am told, is an expression of this loss.  Being a selfish WHAT! person, I of course stopped listening when I heard: "She has what you have and was diagnosed in May.  She's had five surgeries..."  WHAT?  I made her start over:  "What do you mean she has what I have?  What kind of cancer is it again?  We are NOT the same.  My doctor didn't recommend that I undergo any trials and said he would not because I was not a candidate--said 'If you HAVE to have brain cancer, this is the kind you'd want to have.'  I don't understand.  Do you mean she has an oligo dendro glioma, or glioblastoma?"  And quick question:  "How do I know what these FREAKING words MEAN?"

You see... it is obvious. I am a coward.  I thought I was brave and handling this brain cancer scare thing really well.  I thought I was doing what they told me, doing as much as I could, puzzles, brain teasers, math, keeping active--sitting on the couch for five months active?  WHAT?!  Anyway, I found out that this poor creature, my sister-in-cancer-in-life has glioblastoma.  OH!  SHE has glioblastoma.  I have oligo dendro glioma.  We're not the same at all.  NOW I can afford to be magnanimous.  Oh poor thing.  Of course we'll go to the art show because we must show our support for this creature who has something worse than me.  I am not HER.  I don't have what SHE has.  I can afford to see her, talk to her, look at her art--maybe even buy something.

WHAT?!  Who do I think I am?  I picture Queen Elizabeth, riding in her carriage, hand moving slowly back and forth, looking down at this poor woman and the THOUSANDS of others WORSE off than me because they have the "bad" cancer.  Cancer, wherever it may appear, will affect every single person who reads these words.  You, your friends, your family, your pastors, your employers, your employees, your children... will know the heartbreaking reality of what cancer WILL do to a loved one.  Cancer rips a hole in your soul.  It steals one's privacy, dignity, creativity, sight, hearing, the ability to lift your arms around those coming to offer support and comfort.  People passively say "I'll see you in hell."  Well, I say that cancer is hell on earth.  Cancer ravages our loved ones and takes them to places too horrific for words--dragging you into the depths of despair, fear, and the unknown with them.  YES I believe that my God is an awesome God.  YES I believe that there is a reason these things happen.  YES I believe that I will face my God and that He will find me worthy of the joys of Heaven.  But I'm also an experienced "cancer survivor"--my best friend when we were 26 died of metastatic melanoma, my grandfather died of liver cancer when I was 24, my father died of liver cancer in 1989; my mother died of renal cell cancer in 1995; my grandmother died of glioblastoma in 2008; a dear friend who I had coined "my surrogate mother" died of lung cancer in 2010.  I have personally been asked by three different people if I would end their lives as they struggled with late-stage cancer.  What an awful end to beautiful lives lived.  Whether or not I'm "the same" as this beautiful artist who is putting her artwork on display for the world to see and appreciate, or whether or not our illness is "the same" is irrelevant.  What IS relevant is that we ARE survivors, struggling to save our lives.  Although this woman who is unknown to me and I may be at different stages of this battle, we ARE at war.  We are at war against this deadly disease.  WHAT are we going to do about it?

I'm forming a team:  "Dudes and Dames for Brains."  There will be a 5k here in Austin on March 17th at Camp Mabry.  It is the inaugural walk to find a cure for brain cancer in Austin.  I am thrilled.  Once my account is set up I'll send you a link.  If we get $10k (yes I'm ambitious), we'll get our own tent!  Guess who wants a tent?! For now, Go here:  http://www.texasoncology.com/head-for-the-cure/ -- to get the scoop.  I am Diane Reed. I am an 8 month survivor of oligo dendro glioma.  Cancer is an indiscriminate thief.  WHAT are we going to do to put an end to this filth in our lifetime?!  For now, we WALK!  (Or run.  Or even cycle--I'm not picky!)  

Christmas--Brain Cancer Style

The unfairness of "Life"

Let's start with the angels and the families in Connecticut who are forever changed. Do you get that we have no control? I am frightfully aware that there will be (likely) addiction, mental illness, and yes, suicide, that will come from this; (and trust me--having lost my son in a car accident 4 years ago November 12th there won't be any words people might offer that will assuage that grief).  I cried yesterday for the children and the families who would be made to suffer the rest of their lives. I remember when my husband told me about my son -- I honestly believed we could just start the day over. We'd just go back to that morning, I'd call him and remind him to slow down, ask if he was wearing a seatbelt, all those motherly things you say to your child. But I WOULD start that day over. Only no matter how much I considered doing so, the reality stuck that it could not and would not happen. It was SO frustrating. It continues to frustrate me. I create lives for each of those stolen from us. I see their stockings, picture their gifts hidden where their parents thought they were safest from discovery. The adults who were lost; some who died protecting OUR children. There were prayers being spoken in that school... Long before 911 got the message of the crushing tragedy. Some first responders might not survive--the memories more than they can bear  It is true that this individual did not "take" this town's spirit--he can't have THAT. But he did take their innocence. And innocence lost can never be restored. 

So from one mother to all the other mothers, fathers, spouses, siblings, counselors, pastors, physicians, and any others whose lives will be touched by this incomprehensible tragedy... We are here. And time will never diminish our love for you, your little lost loved ones, your spouses, brothers, sisters, aunts, uncles, children and so many more who are forever changed from this one man's rage and blind hatred. 

When you have cancer, you think your life is over. In those first few minutes your ears go into neutral and you just tune out everything else. You know the world is still turning, but you can'tt stay on the ride. Then a madman comes along and you again begin the search for fairness in all of life's "downs.". Ever notice we don't search for fairness when our future is bright and full of promise? Life is scary. And it most certainly, my friends, is not "fair.". It's just life. Until it isn't. 

Please stick with me! I have a blood draw on December 20th. Prayers are mandatory. If you have no faith, suck it up, hit your knees to the floor and say this: "Father, hey. We don't talk much. Well... Never. But... I am struggling with this tragedy in Connecticut. I am trying to piece together my thoughts on how this could be allowed. Mostly Father, I need to find some peace where I see nothing but injustice in the world. Seriously.  Where WERE you? I trust that You will have handled the murderous demon who took our loved ones. And Father, in the meantime, could you check in on my friends, family and others who may need you. Your will and not ours be done, Father. Fair or not fair, all will be revealed in Your time. Life is a flash. Please help me live it in accordance with Your will. In the precious name of your Son, Amen." or something along those lines! Ramble if you desire. Curse. Scream. God has heard it all and then some. He can take it. 

I will return to posting about my journey later. My heart hurts and i'd like to aid those struggling with their illness.  God Bless You friends! Stay safe! (And thanks for the prayer--don't worry, God won't tell!)

Oh!! And to my hubby for your help putting this together so it sounds remotely intelligent--I love you. What a care giver!

Til we meet again--LiveSTRONG!

You have Brain Cancer

Hi all,

My name is Diane.  This is a picture of me standing on the "wee bridge" at St. Andrews in Scotland in July, 2011.  Little did I know I was carrying a tumor along for the ride.  I have a lot more to say and share with you.  Make a journal for myself.  Some of the details are a little vague.  Less than a year after this picture was taken I was awakened in the hospital in Austin, Texas - my husband and my son Tyler by my side with worry I hope to never again see etched in their beautiful faces.  Before the three seizures that night which resulted in a ride to the emergency room on May 14th (my husband's birthday is May 15th - lucky guy), I was going along like any other hard working family law paralegal.  Typing 120 words a minute with only two errors (that's right).  You will never know how long it is taking me to write this post - it started about 25 minutes ago.  Sure takes a lot of thinking, re-writing, spell checking and patience.  But I can be patient. I was diagnosed with brain cancer - an oligo dendro glioma, in the left frontal lobe of my brain. Less than a week after the MRI results were in, I underwent surgery on May 29, 2012.  I have read and have been told by my doctors (and I am an on line reader as well - although I take THAT with a grain of salt.  I am told that 100% of the tumor was removed and I have to say that I am doing quite well.  I am frustrated at times by balance issues, headaches, frustration, fatigue - I am on chemo (Temador) for one year. Five days a week, for a period of 12 months.  I've just finished my 6th round and hopefully I will be considered on the downhill slope.  At least I hope that is the case.

Friends have been asking me to share my story.  I will start at the beginning - but the beginning is my life.  I guess you could call me a "Girl Interrupted".  I will endeavor to write down my memories since diagnosis.  My memory isn't what it once was, which can also cause problems.  Because now when I tell someone I've already told them something and they say, "You did not." I never really know if they're lying.

I hope you will be touched by my situation and that you will find something useful for yourself or someone you love who may be going through the same thing.  They say my cancer is incurable - but I'm alive today so I guess it is curable.  I'm banking on being that miracle you hear tell of.  Not just as often as you'd like. I'd like to share some gruesome pictures with you all too - not too bad.  Just MRIs of the tumor, the "after tumor" and a picture of the 23 something staples that stretched from ear to ear after surgery.  THOSE were fun times.

Oh yeah - fair warning. I am a faithful Christian and I believe that there is a plan for everything. I don't care that I have cancer.  In a perfect world, no one would have cancer.  But from what I've seen in my years on this planet, none of us has it perfect.  I'll write more, just shorter notes.  This blogging stuff is rather exhausting!

TTFN - bring on the followers!

LifeSTRONG and kick cancer's ASS!