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

My pet peeve

Last night, upon hearing from a friend that she just lost a very good friend to cancer, I reflected upon my own situation. I recognize that I am one of the "lucky" ones. I beat cancer and continue to be healthy but realize that cancer can rear its ugly head again at any time. I sometimes feel like I live my life "on guard", just waiting for the unthinkable to happen again. Knowing that everyday people die from this disease, my pet peeve is when a cancer survivor says that cancer was a gift. I understand that (in an odd way) it can feel like that. I do acknowledge that many women, during and after diagnosis, dig deep inside themselves to find an amazing strength to become much stronger than they ever thought they could be. But I will never agree with that statement because it certainly never felt like that to me. Survivors are often perceived as courageous, partially because they are, and partially because they had to be. When you are given that kind of news it is an eyeball to eyeball with death moment, and most of us suit up with all of the strength we can muster and walk head first into treatment. I actually envisioned myself putting on a suit of armor, grabbing a sword & shield and heading off into battle.

But while you are already questioning every decision you are making, a celebrity like Suzanne Sommers releases a book suggesting that chemo is a pharmaceutical conspiracy. Maybe, but it's the best thing we have going at this point. Sadly, treatment doesn't always work and cancer takes lives. I have made my peace with that but decided to live my life to the fullest extent possible, just in case. I don't hesitate to try anything, whether it be a new sport (roller derby), food (crawfish etouffe) or a new job (working with teen parents) because life is to be lived. That old adage, "I'll sleep when I'm dead" takes on a whole new meaning as I push myself to prove it's true. That reminds me of Warren Zevon's song I'll Sleep When I'm Dead:

So much to do, there's plenty on the farm

I'll sleep when I'm dead

Saturday night I like to raise a little harm

I'll sleep when I'm dead

I'm drinking heartbreak motor oil and Bombay gin

I'll sleep when I'm dead

Straight from the bottle, twisted again

I'll sleep when I'm dead

Well, I take this medicine as prescribed

I'll sleep when I'm dead

It don't matter if I get a little tired

I'll sleep when I'm dead

I've got a .38 special up on the shelf

I'll sleep when I'm dead

If I start acting stupid

I'll shoot myself

I'll sleep when I'm dead

So much to do, there's plenty on the farm

I'll sleep when I'm dead

Saturday night I like to raise a little harm

I'll sleep when I'm dead

The song contains Zevon's trademark cynicism and morbid fascination. It features a man refusing to rest from his damned deeds with the note that he'll sleep when he's dead. The song suggests that with life so short and with only so many Saturday nights to "raise a little harm" there is no time for sleep. It also notes that if he stops being able to keep up his act and starts "acting stupid" that he'll shoot himself. I think it has become my personal anthem!

Life is good!

A big hello to everyone out there. I know it's been a while since I wrote, but as you know, life happens. So, what have I been up to? I have been incredibly busy with Community Green as we opened our second location today! We now have a second shop in Mahomet, IL. Today was the grand opening and it was extremely successful. Urbana had a good opening but Mahomet had a fabulous opening. We ended up opening up early as we had so much interest in our shop! We got lots of positive comments.

And even better, I was offered a job yesterday!!! I will be joining the team at Teen Parenting Service Network to provide individual case consultation for service providers regarding policy and procedure, resources and client issues of placement, education, clinical needs, etc. while protecting teen parents rights. They were extremely interested in my domestic violence background and impressed with my work on the Illinois Certified Domestic Violence Professionals Board. They think I have a lot to offer. And, since it's only 20 hours a week, I can still work with Community Green!!!

In February, I passed my roller derby skills test for the third time (Yay) and continue to skate for The 'Paign. I'm such a maniac when I take that test, throwing myself to the floor during the "falls" portion. But I was actually tamer this go round...still nervous but tamer. You see, there's quite the long laundry list of skills one must be proficient at in order to become and/or remain a derby girl. They have become almost second nature by now since we continually practice them. So, I'm not sure why I freak out about it.

Last weekend, I attended the C4YW conference in New Orleans. C4YW, co-hosted by Living Beyond Breast Cancer and Young Survival Coalition, and generously supported by Lead Sponsor Susan G. Komen for the Cure® is the only international conference dedicated to the issues of young women affected by breast cancer and those who love and care for them. It was my first visit to New Orleans and Bourbon Street. I had a blast (Any of my Facebook friends can attest to that!). The conference was great, too. I learned a lot and made some great new friends. I even tried belly dancing and authentic creole cuisine!

So, knock on wood that my good fortune continues!

Rudderless in a sea of uncertainty

Tomorrow brings a follow-up appointment with the oncologist. These appointments are important because as a cancer survivor, I live with heightened risks. But the last place I want to be is the Oncology Department. It's like returning to the scene of the crime. So the night before said appointments my mind begins to race and my anxiety ramps up. Crazy thoughts run rampant. Unfortunately, fear of recurrence is an unwanted yet inescapable reality. It has been described as sort of like having Muzak playing ever so softly in your head all the time. After a while you get used to it, but you never forget it's there. One of the first thing a cancer survivor realizes is that cancer is a chronic condition. Remission doesn't come with a money back guarantee and cancer hates to lose. Just when you think you've won the fight, it can rear its ugly head again. I worry about having to go through treatment again, suffering the side effects of chemo and putting my life on hold for the second time. Wherever will the strength and willpower to go through it all over again come from? Can I outwit death yet again?

The most frustrating aspect of the fear of recurrence is that it can overshadow my view of the future. Sometimes I feel rudderless in a sea of uncertainty. Cancer has lit the wick on my sense of mortality. If I'm living on borrowed time, investing in the future is futile. But approaching it that way means cancer wins and I cannot accept that. Cancer has managed to rearrange my priorities, screw with my career, and shift my outlook on life. But since I'm not very adept at "playing the victim", I guess I'll just have to play the hand I've been dealt. I'm just not exactly sure how life should look. After my ex-husband's recent death, I want to make sure my life counts. But then again, will it really matter 100 years from now?

And today's tarot card was the Five of Pentacles. This card represents the dark night of the soul, when you must stumble around in the darkness because you can no longer see the light shining within you. Often, during times like this, salvation is not far away, but being so preoccupied with your material problems means you cannot see it. But it also suggests that my power today lies in defiance. I am willing to reject the sure thing or accept excommunication to try to make it on my own rather than endure the status quo or submit to conditions that assume I am invisible. I will accept responsibility for the difficulties ahead and will not seek pity for having chosen against the grain. I am empowered by mutual support and my assets are self-worth, hope, and pride. (See, not a victim!)

Obsessing About Death

I'm feeling a little out of sorts tonight. Ever since I learned of my ex-husband's passing, I've been contemplating death a lot. (I'm pretty obsessed with it anyway and Paul's death certainly didn't lessen that obsession!) So I wonder, why do some terminally ill patients furiously fight to live even in the face of poor survival odds, trading whatever quality of time they may have left for painful or even risky treatments that have a high probability of failure? And why do others view death as a very gentle and normal life process? I suppose the answers are as numerous as the individual patients themselves. Researchers say that a person’s age, religious belief and life experiences all contribute to how well that patient copes with a terminal diagnosis and can even determine the will to survive. Knowing how freaked out people get when I talk or write about death, I recognize that we live in a culture where nobody talks about dying, so patients have a sense that the reason nurses and doctors won’t talk about it is that dying must be too horrible to even think about. Am I determined to try to live no matter how terrible my suffering may become? Abso-fu**ing-lutely! I will not go quietly into that goodnight!!! It is about surviving.

Leaving my family and friends with positive memories of how I conducted my battle against breast cancer is a big concern. At times during my treatment, I was in pain and fairly sure I was dying. All my life I’ve tried to protect my family from harm. I found it more painful for me to watch them watch me than the actual pain I felt from treatment. Should I lose this battle, I want them to remember me as a fighter, not a quitter. That is exactly why roller derby entered my life. I wasn't ready to give up and I had to find a way to make myself stronger. Having cancer has given me courage and freedom to speak my mind; I don’t mince words. If I feel something, I say it because I might not get a second chance to say what I need to say. If I die tomorrow, I hope I’m not leaving anything unsaid or undone.

Last week I wrote "I hope to be a whole person, one who loves, accepts, serves, rejoices and opens up to others honestly and without hesitation. Then I might be someone worth knowing. That will be a life well-lived. That's really all I want." Despite my cancer, I consider myself lucky. I think I've lived a good life—the best I know how. But I am not ready for that final journey. And as the 2012 roller derby season is set to begin, I will remain strong and continue to beat cancer!

Death of an ex

Today I learned that my ex-husband had died. An email from my friend Karen informed me of this fact. It said: "I am very sorry to hear about Paul's death. I know this must be a difficult time for you, even though you have been divorced for many years. He was still a part of your life. Anyway, I'm here for you." My first thought, WTF? I didn't see his obituary in the paper and I read those religiously (It's a weird obsession I have). I then checked our hometown paper - still nothing. So, I googled him and up it popped - an obituary from Duffy-Baier-Snedecor Funeral Home in Odell. It says he died at home in Urbana, after an extended illness. So why no obituary? No matter what our history, I think he at least deserves an obituary. I'm not sure what I am supposed to feel or what I am supposed to do. We've been divorced for 22 years, after only being married 18 months. Yet I found myself staring at his obituary, near tears, wondering why it was hitting me so hard. After talking with a few friends, I realized that I am sorry for how his life turned out - no one cared enough to write an obituary. While Paul's death resurrected my fear that no one will miss me when I am gone, I know that I am blessed with good friends who love me and would miss me. I am lucky.

Two years ago I wrote a blog entry about a life well lived and I quote, "But I remind myself of the profound truth I have discovered -- it's how I live my life that matters. I have spent these past few months with cancer looking for its higher purpose. I don’t profess to have some cosmic understanding of that, but every day I see evidence of the opportunities it opens to me. Sometimes I feel like I'm all dressed up with no where to go. I walk the tightrope between maintaining hope that I will live to a ripe old age and living in the moment. I have every reason to be filled with hope. I am fairly sure that I will be able to face wherever this journey takes me. I hope to be a whole person, one who loves, accepts, serves, rejoices and opens up to others honestly and without hesitation. Then I might be someone worth knowing. That will be a life well-lived." That's really all I want.

I am sorry that there was so much rancor between us at the end of our marriage and long after the divorce. I am sorry that I didn't apologize to him for my part in the downfall of our marriage. I am sorry that I never returned the egg plate he so badly wanted (and was awarded) in our divorce settlement. I am sorry his life didn't turn out the way he had hoped. May he rest in peace.