Oh the uncertainty of it all

     I saw my oncologist today to get the test results from the CT scan and ultrasound.  The results were surprising.  Although there is a lymph node that is enlarged on the left side, there are actually several on the right side!  I can't feel them like I can the one on the left but apparently they are there.  Is it the cancer coming back to take the breast it was previously denied?  Or is it another type of cancer?  Or maybe nothing?  Luckily my tumor markers are not elevated.  For those of you unfamiliar with cancer terminology, tumor markers are substances that are produced by cancer or by other cells of the body in response to cancer or certain benign (noncancerous) conditions. Most tumor markers are made by normal cells as well as by cancer cells; however, they are produced at much higher levels in cancerous conditions.  So what does this mean?  They don't know!!!  It could be a simple case of a viral infection causing inflammation of the nodes or it can be a recurrence.  I am officially now in "monitoring status" meaning we keep an eye on them and hope they do not grow!  I have to see my oncologist again in a month for more poking and prodding.
     Hannah has taken a positive position on this as it has not been termed a recurrence.  I suppose that is the best way to treat it but I hate the uncertainty.  I don't know how to deal with uncertainty.  How do I "fight" this?  I knew how to fight the last lump - remove it and pump my body full of drugs meant to kill it.  But what do I do about this situation?  I suppose the answer is to go on living and doing all the things I have been doing, except maybe not so many tequila shots?  I hate living with the general feeling of uncertainty about what tomorrow will bring. Having cancer makes me more aware of uncertainties because I never expected to get cancer in the first damn place. I have found myself thinking, "If I can get cancer, then what the hell else can happen?" I try not to let this feeling of uncertainty take over my daily life but often it does.  I really don't like going to that dark place but sometimes I can't help it.
     Before I got cancer, I was under the illusion that I had things under control. Oh sure, there were job issues and bills and all that, but all in all, I was coping pretty well. And then that sense of control is shattered, and I don't think it ever really comes back. It is replaced by uncertainty in almost everything. How long will I live? Did the chemo work? What will my next scans show? Will it spread? Will it come back? It seems that almost nothing is certain, except that my life has been torn to shreds and tossed in the air like confetti.  I think most cancer patients don't ever think it's really gone. It's just hiding, waiting to jump out and scare us when we least expect it. Will I be able to resume my old life? To rebuild my battered body? I don't know.  But I do know this disease has changed me dramatically in so many ways. I am a different person. Hopefully a better person.

I made it to 50!

Whew!  I made it to my 50th birthday.  A few years back I wasn't sure I would.  I celebrated my birthday by spending the weekend in my hometown of Pontiac, IL with one of my best friends - Sharon.  We attended a birthday party thrown by our high school friend, Dan, who was also turning 50.  It was fun riding around town in Sharon's convertible, checking out the old haunts like Mario's Pizza and Bob & Ringo's.  It was the perfect way to celebrate.  I had considered having a big blowout for my 50th but when I thought about it I decided that I prefered something more low key.  Once you are diagnosed with cancer, things you once considered important (like big birthday bashes) are no longer so important.  

I welcome my birthday--the day I get to add another candle to the cake--not only for my years on this earth, but also for my years as a cancer survivor.  After all, the only way to avoid growing old is dying young. I am trying to avoid joining that club!  Lets face it, we've all survived something: cancer, a bad break-up, the death of a loved one, a failed career and we're still here on this ridiculously fabulous planet for yet another year.  Isn't that a miracle?   Maybe one day, someone will have a cure for cancer and cellulite. Wouldn't that be great? Talk about having your birthday cake and eating it, too! 
    
Now don't get me wrong, it's not like I'm doing back flips about getting:

A. Crow's Feet
B. A Wrinkled Neck
C. Chicken Wings
D. Saggy BoobsE. Grey Hair
F. All of the Above
 

CORRECT ANSWER: F

But I do intend to get so old that I do end up wrinkled and gray and stooped.  I'll whack people with my cane and wander around my nursing home yelling, "Move bitches" and "Bring the 'Paign"!  Who would like to join me there?

Just when I thought it was safe to go back into the water

     Just as I try to forget about cancer and get on with life, I get slapped up side the head with a vicious reminder.  I found a small lump in my left collar bone area about 10 days ago.  That means an ultrasound, a CT scan and a biopsy.  Now, it could be absolutely nothing, but it has to be checked out.  Seems once a cancer patent, always a cancer patient.  I won't repeat what I exclaimed when I found the lump as it was wholly inappropriate and I'm sure I made some of the words up!  I refuse to go into "freak out" mode until we know exactly what we are dealing with.  I learned that the collarbone area near the throat is a very common area for recurrence, which may be why my oncologist had a worried look on his face.
     As my four year cancerversary approaches, I was feeling pretty smug.  I had kicked cancer's ass and really hadn't given it much thought lately.  But I think cancer hates to be ignored and decided that I wasn't taking it seriously enough.  So it had to show me who is in charge.  I've always said that I don't think I give enough in the fight against cancer, so maybe it is time to rethink that.  As I ponder how I ended up here, I now know that real life brings the unplanned and the unthinkable.  Real life challenges you to grow, to become more than you were. Real life is not safe.  It certainly hasn’t been boring, either.
     My birthday will soon be here and I plan to celebrate with some high school friends.  Back in high school I never imagined the trials and traumas that life would bring.  Back then, I never could have imagined the me I have become by struggling through those things.  I never knew I could take so many hits and keep getting back up.  There is something appealing about a simple, boring life but alas, it is not to be.  I will soon know if the fight is on again.

Letter to Alicia

The Grim Reaper entered our lives yet again.  He managed to slip in unexpectedly and do the unthinkable--take Alicia from us.  On Tuesday, December 18, 2012 we learned she was no longer with us.  This is what I need to her to know:

Dear Lish-
              My heart hurts.  I mean physically hurts, like someone punched me square in the middle of it so hard that I'm sure there is a hole there.  I can't tell you how many times in the past 5 days I've picked up the phone to send you a text message.  Then I realize I can't and the pain washes over me in engulfing waves that makes it hard to breathe.  After the cancer I had promised myself to never let things go unsaid.  I take some comfort in knowing that we didn't.  The last few years have been rough and we didn't get to see you as often as I would have liked but at least we talked often, whether it was on the phone, via text or on facebook.  I'm glad you knew you were loved.  I don't know why it was your time to leave us but what I do know is that we will go on.  Each of us will do it in our own way, missing you while surrounding your children with love and sweet memories of their mother.  You have entrusted us to care for these three precious souls, leaving pieces of yourself behind in them.  We won't let you down.
     I loved that as a little girl we would ride in the truck, singing at the top of our lungs to Knock Three Times by Tony Orlando and Dawn.  You were about the only one who would listen to me sing in my awful, got-kicked-out-of-the-church-choir voice and not tell me just how terrible it truly was.  You didn't care how bad it sounded, you just let it flow.  I couldn't help but appreciate such acceptance.  Don't get me wrong, you know it wasn't always easy in the beginning but I accepted that you and your dad were a package deal.  And we did manage to become a family.  I knew we had made it when you didn't hesitate to ask me those hard questions in public, so everyone could hear my answer.  Questions like, If my mama's black and my daddy's white, does that make me an Oreo?  I wanted to throttle you on the spot there in the grocery store. 
     I loved your fearlessness.  Like when you were four or five and joined the band Gator Alley on stage at the concert in Hessel Park to sing Country Club.  The lead singer asked if anyone wanted to come up and sing and like a shot you were up on that stage.  You knew all the words, too.  Even made the local paper.  You were always such a ham; you could always make me laugh even when you weren't trying.  Like when you were six and Aunt Bert and I took you and your 6 month old sister (Hannah) to Nick's Park in Monticello; you decided to go down the slide even after I warned you it was hot.  I'm sure you shocked some of the parents when you yelled, "Aunt Bert, hot butt" clear across the park.  I think I laughed so hard I almost peed my pants.  Someday I will share those memories with your children so they will always know you the way I knew you.
     You were so excited about being a big sister.  You and Hannah butted heads so much because you both thought you were in charge.  It was nice to watch your sisterly relationship develop over time.  I think Hannah said it best with the poem she wrote for your memorial service:
                                                          
Alicia's Poem

I didn't always know
my sister meant the world to me.
It took us growing older
for both of us to see.

The times we spent together
were precious to us all.
We weren't with each other much
but we would always call.

When she became a mother
I loved her family.
Now quickly she is gone from us
I only have the memory. 

Of how much I loved my sister
And what she meant to me.

     I hoped you liked that so many of your dad's relatives ended up at Aunt Anne's house after your memorial service just to be together.  We know you were skipping the CD during the memorial service at the church because we played it the night before and it was just fine.  Way to make your presence known.  I said to Hannah, just as Bobby was saying to his mom, "That's Alicia!"  I laughed through the tears when it happened.  At Aunt Anne's as we watched the DVD with pictures of you, the kids and the families (both yours and Bobby's), I could feel you smiling.  We cried, we laughed, we reminisced and just enjoyed being together.  No drama, no fighting, just being.  And then last night after we returned home from Missouri, I dreamed of angels and tinkerbells.  I was in a beautiful, lush, green meadow running through the sunshine while they circled my head.  I felt no fear and no pain, only a calm peacefulness.  I think that was your way of comforting me and reminding me of our connection.  I will forever think of Alicia's meadow and try to always carry that feeling with me. 
     I'm not really sure how one goes on after such a devastating loss but I'll do the best I can.  I draw strength from Hannah as well as give strength to Hannah.  I try to help your dad connect the dots as he works to process this.  And when I want to yell at him to stop being so damn annoying, I will remember the patience and understanding you always displayed with him.  But I am counting on you to send me a sign whenever I need it.  I love you and will forever miss you. 

Love,
Mom2

R.I.P. Robert

     For those of you who don't already know, Robert Reese, chief meteorologist for WCIA TV died Tuesday night at a Chicago hospital.  He had been battling pneumonia and cancer.  I have to say that I am more than a little freaked out from the news.  Now, Robert and I were not fast friends.  We only saw each other occasionally at the Oncology Department at Christie Clinic.  We got drafted into a club no one wants to be in.  I admired his grace and courage as he fought his fight.  He always had a smile for you and waited his turn along with the rest of us.  Hanging out in the waiting area could be quite stressful.  We tried to keep it light, discussing mundane things like weather and current events.  As you can imagine, weather discussions with a meteorologist can be quite fun.  I  think it would have been easy for him to use his celebrity status to get in and out faster but he didn't.  He knew all too well that cancer didn't care about his "status". 
     I think I am freaked out because we are close in age and the last time I saw him, he looked good and said he was feeling great.  It just goes to show that you can look good on the outside while your insides are betraying you.  I am fortunate to have recently celebrated my 3rd cancerversary.  I don't spend much time thinking about cancer until it sneaks up on me and knocks me up side the head with news such as this.  It scares me to think it could happen to me as well.  That coupled with the research that my type of cancer is aggressive and does not have the best survival rate sends me into a tail spin.  HER2-positive breast cancers tend to be more aggressive than other types of breast cancer.  They're also less responsive to hormone treatment.  Now, I have always known these facts but have chosen not to dwell on them.  That is until I am forced to face them. 
     I can't help but wonder why some of us continue to survive while others don't.  Survivor's guilt rears its ugly head.  In cases of chronic illness, this guilt can occur after the death of a peer who faced a similar diagnosis.  By definition, there is an implied comparison with people who have endured similar ordeals.  Survivor guilt can help to find meaning and make sense out of the experience.  It can help to cope with the helplessness and powerlessness of being in a life-threatening situation without the ability to save yourself or others.  It can co-exist with other responses, such as relief and gratitude, even being prompted by them. Logic has little or no impact on guilt and when I find myself comparing my situation to others, I have to remind myself that every person's cancer is different and that I am winning this battle.

Happy Birthday To Me

Ok, another birthday under my belt and another year cancer free. Can I call myself "cancer free"? I guess I can call myself  anything I damn well please. I celebrate each birthday because I don't know what the future holds but I do know that today I am still alive and that is the best cause for celebration. Apparently, cancer free is a relative term because no one really knows if they are cancer free for many, many years. The reason is that cancer cells are microscopic and hide out in the body for an undetermined amount of time and than reappear months or years later. However, the longer one goes without the cancer recurring, the more likely that they are that it will not relapse, but alas, there are no guarantees. According to the National Cancer Institute, the five-year survival rate for non-metastatic breast cancer (breast cancer that has not spread beyond the breast) is 80%. Newspapers and television usually translate that to, "If you've survived for five years, you're cancer-free." This is a bit misleading. It's true that during the first five years, the risk of recurrence is highest. But breast cancer can recur even after five years. The important point to know is that the more time passes, the lower the risk of recurrence becomes.

It's hard to talk about being a breast cancer survivor, because there is still no cure. My doctor may say that I am in remission. Or that I am NED - No Evidence of Disease. The National Cancer Institute defines a cancer survivor this way: "An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life." A recent poll asked, "When Do You Become a Breast Cancer Survivor?" The options were: at diagnosis, after surgery, at the end of treatment, after your 5-year checkup, or whenever you say you are a survivor. More than half of all responses favored the idea that you are a survivor when you say you are - not based on the opinion of others, not measured by medical milestones, not codified by your culture - but based solely on your own declaration. I started surviving the minute I was diagnosed and while the term survivor is great, I feel I become a warrior. I went to war and won. Hear that CANCER, I WON!!!

Letter to Hannah

 Dear Hannah-

                         I hope you know what a huge milestone today is for both of us. You, because you are finished with high school and moving on to bigger and better things. Me, because I have met that first milestone I set when I learned I had cancer-seeing you graduate from High School. I am so very proud of you and love you more than anything else in this world.

I previously wrote this: I remember sitting in the doctor's office as the surgeon said those dreaded words, "You have cancer". I felt like I stepped into the middle of a silent hurricane. There was a roar and a rage that spun my life in a direction I had never anticipated. When you are told you have cancer, it amounts to being given a death sentence. All sorts of crazy thoughts run through your head. Mine were "Will I live long enough to see my daughter graduate High School? Graduate College? Get married? Watch my grandchildren grow up?". Next you realize that you have just set milestones to meet. Then you dive right into the self-pity. When you finally come up for air, you prepare for your recommended treatment. Then you vow to fight the cancer with all you've got and set out on your survivor's journey. And it can be a tough one. Your safety, security and optimism about your life and the future is shaken. The world is revealed as unfair. And with those three little words, I became a breast cancer survivor. 

They say that when you face death, your life flashes before your eyes. I guess I chose to focus on the important things in my life. Which brings us to today. I am so sorry that your family members can't be counted on. You know that Grandma Martha would have been yelling the loudest and is probably throwing a raucous party in heaven, celebrating your achievement. I'm sorry that the father you knew and loved so much managed to scramble his brain and morph into a whole different person that is hard to love. He really is proud of you, he just doesn't know how to express it anymore. I'm sorry that the breast cancer almost deprived me of this moment. But it didn't and I'm planning to be around for all those other personal milestones I set. 

I know that you felt lost in the shuffle after your dad's accident. But I knew that there were plenty of people to take care of you, so I didn't worry. Then, just as I thought we were getting back on track, Cancer reared it's ugly head. And I focused totally and completely on myself. Please know that you are my priority and I am here for you. It is my greatest desire to see you succeed and do great things for the world. I love you.

        

                                                                                                                                                        ~Mom