How cancer can lead to a positive awakening

This may be the first posting written by someone else within the pages of this blog.  I thought it was inspiring message when I heard it the first time last Sunday during church.  Cancer effects all of us, we know of someone we lost or have battled it ourselves.  It's our worst fear, but we can learn how to cope and live with it.  My wife was articulate and poised behind the podium - although once or twice she broke down while reading this.  I heard the sniffles and saw others wiping their eyes.  It's an inspirational story, not only about how Ali became a cancer survivor, but how this deadly disease transformed her faith - how she became a stronger - independent woman. I hope this inspires you.

Rev. Diane and I have spoken several times about sharing my faith story with the Congregation. I wasn’t ready for a long time. The preparation for today was difficult. Many of you know that I was diagnosed with cancer in June of 2011. But this isn’t a story about cancer, or beating cancer. It’s not about treatment and side effects. It’s about the most important relationships in our lives, and what happens when we recognize them as just that.

My story begins before my diagnosis. I was coming out of a very difficult time. Depressed, feeling worthless. I had just begun to realize it was my own responsibility to do something about that. I needed to answer for myself the age old question, “Who am I?’ So with the incredible support of my husband and children, I focused on my passion for public education, and ran for the Board of Education. On May 17^th, I won my seat with a large margin, and felt like this was the beginning of a fabulous new journey. Just 2 weeks later, on June 1, I was diagnosed with Endometrial cancer; Stage 4b. My world came to a grinding halt.

Beyond the physical pain and illness was the emotional chaos. The fear. The questions. Terror. I tried to keep a brave face most of the time, but internally I was reeling. I spent some time contemplating, why? Not a self-pitying ‘why me?’, but a realistic, trying to understand, why?  What did I do to bring me here, to this place? Was I being punished? Was this diagnosis a message from God? What was He telling me? The Catholic guilt from my childhood had me recounting every misstep I ever took. Every regret. That is a very dark place; not one anyone should be in for very long. I tried to focus on being strong for everyone else. Not letting them know how scared I really was.

Less than a week after my complete hysterectomy, we came here to MSUCC for Emma’s confirmation. I was consumed with guilt because I was in no condition to throw Emma the party I had promised.  I was in a fog from medication, and so incredibly sad. I cried quietly. I was afraid I was dying. Afraid I wouldn’t be able to see my kids grow up. I didn’t know what was coming next. Fear of the unknown is the worst kind of fear.

When it was Emma’s turn, our entire family came forward to lay hands on Emma as Rev. Diane prayed over us all. In that moment, with Rev. Di’s hand on mine praying over Emma, I felt a calming sensation; a breeze from the top of my head down my back… and the tears stopped. I felt reassured, peaceful, comforted. And I knew God was with me- He loved me, regrets and all.

That day I remembered a quote that I had read in church long before: Faith is knowing that “When you come to the edge of all the light you have, and must take a step into the darkness of the unknown, one of two things will happen. Either there will be something solid for you to stand on - or you will be taught how to fly.” Faith. I realized as I dissected that quote, I have faith. I need to lean on my faith. Trust in God, talk to God. I knew I wasn’t going to fall into an abyss, I had faith.

I began praying more regularly. As Rev. Elaine has reminded all of us, prayer is a practice. And I practiced a lot. All my life, my prayers have begun with all of my thanks, and then move to “Could you please…” The more I prayed, the more I realized how much I had to be grateful for. Regardless of treatment, side effects, pain… I knew I was blessed many times over. My prayers of gratitude lifted my spirits no matter how I felt physically. I found myself stopping to offer thanks to God at the strangest times and places. In the middle of Uncle Guiseppe’s, in the car at a traffic light. I realized my prayers of gratitude were so abundant I nearly stopped the “Could you please” prayers. I never once prayed for God to take away my cancer. I prayed for strength, energy and for the people I loved. I prayed for God to stay by my side on this journey, no matter how long the road was. And I prayed that I would be open to the lessons I needed to learn.

If prayer is a practice, I believe faith is your relationship with God. Just like any other relationship, it requires time and attention. The bond I have, the connection I feel to God, is stronger now than ever before. And with that foundation, I found that I was more observant and open to everything around me. My inner strength seemed to double.  My attitude was more positive, and I began to recognize how much negativity I had been a part of for so many years before.

I paid more attention to my thoughts. The pervasive negative tone of my inner voice disturbed me. I realized I was in a terrible relationship… with myself. The voice in my head was so different from the voice I used to pray, or to speak to anyone else. I could hear the dissonance. Never good enough, strong enough, smart enough. If another person in my life that was that consistently critical I would have walked away a long time ago. But that was impossible, so I had to actively work on this relationship, too. Me, myself and I. The gratitude I offered to God shed light on all the good in me as well. When the negative attacks came I intentionally countered them. When I looked around the house and instinctively thought ‘I am a terrible housekeeper’- I would pause and say, ‘But I’m a good Mom’. I started to take credit for good things I had done, and not shy away from compliments as quickly. I began to see what God saw in me: An imperfect human being, doing the best she can.

It would be a lie to say that every moment of time since my diagnosis had been prayerfully blissful. I had weak moments. I endured 10 months of chemotherapy. Every three weeks I would go to the Cancer Center at Stony Brook. For 6 hours or so, I would sit in a chemo chair while medications were sent through an iv to destroy my cancer. As the treatments went on, it became increasingly difficult to get the iv in. My veins would collapse, and roll. I would spend the first 4 or 5 days after chemo treatment exhausted. I would have to sit and rest after getting dressed. I had a pulmonary embolism that could have killed me. I had nausea, strange shooting pains, and I lost all of my hair. I lost my eyebrows and lashes. I had to give myself injections daily. I had 30 rounds of radiation therapy.

There were moments that I did just cry. Usually in the car, or in the bathroom, occasionally in bed. I wouldn’t want anyone else to see. I wanted to shelter my family and friends from my sadness. So I would allow myself time alone to just be.  But the reality is that I was never alone. In those moments of sadness and fear, God was with me. No, I never heard His voice, or felt His physical touch.  But there is an amazing sense of strength and light that I would feel as I allowed myself that time. God’s warm embrace, His loving light. When I was done with that ‘me’ time, I was ready once again to keep moving forward.

I was surrounded by amazing people throughout my ordeal. I will be eternally grateful to God for the gift that is my husband. Mike has seen me at my best and worst… and he’s still here. Our relationship has grown and flourished in these difficult times. His support, and belief in me has given me the strength I needed to fight. My amazing children, teach me more everyday than you can imagine. My parents, brother and extended family exemplify love. Friends, co-workers, fellow UCC members. The selfless Caring Ministry here brought us food and comfort for months. All of these people are gifts from God… brought to me when I needed them the most.

So, my initial journey began with a question: Who am I? Well, I am many things to many people. I have many significant relationships. I stand here today, a cancer survivor… a grateful wife, mother and daughter.  But above all else, I am a faithful child of God. When I reached the end of my light, and could only see darkness, He didn’t just give me wings, He made sure I wasn’t flying alone.

God IS good… ALL the time.

Wedding Anniversary

On this night I’m up in my room, listening to Pete Townsend’s Empty Glass - album - which is one of my favorite records. There are songs on this album I find myself referring to when I’m working or off in some distant region in my mind. Today was our wedding anniversary and I’d like to let you know my wife is doing well. After ten months of chemo she is taking a break. Her strength is back, there is a smile on her face more often. I feel like we came through some dark cloud and we can see the green grass, the sun rise, a new day has broken. Not the sort of images I normally conjure for you, but in Ali’s case, I am very grateful to have her in my life. I am blessed. The past year I was not the best husband or father and I know I behaved in selfish ways and hurt others who may be reading this, and I would like you to know I am sorry. I am a work in progress and discovered I fall back to destructive means when encountered with a major crisis. I hid my destructive ways very well. Last week we celebrated our oldest daughter’s high school graduation. Amanda spoke to her class and was so poised and natural in front of a thousand and more strangers. The young woman will make a difference - for the better - in this world. Let’s move into this week and next month with hope and faith. Hang in with me…since we’re off to Disney World…so soon I can see the fairy dust floating in the humid air.

meditation

11/27/11 13:57
I’m sitting on the deck with a long sleeve shirt, not that I changed after church, instead I will wear the same clothes and just may change into some sweats. There is always work to do, earlier I gave Amanda a driving lesson I want her to lose her fear of driving; we drove in the parking lot at the train station and on the street which was quiet. Last night Amanda wanted to talk to Ali so I went to bed with Bella. Our sleeping patterns have changed since she came home from the hospital. The event was traumatic and something we never want to experience again. One of my worst fears came true that day, I never wanted to see anyone have a seizure, the fact they are not in control and appear possessed…Bella is fine, since she takes Keppra regularly. The neurologist said her epilepsy will go away as she ages, most likely in a couple of years she will not have any more seizures. They occur when she is sleeping and this is the reason why either Ali or myself sleeps with her. Most nights Ali falls asleep, taking her to bed so she is in the darkened bedroom by 9:30. There is no TV. When they were younger I would slowly rub their eyebrows till they would fall asleep and last night proved the same. The problem occurs when Ali or myself, come into the bed, there is not enough room in our queen for all of us. Last night I woke up a few times and finally at 3:30, came down to the living room for a few more hours of sleep. It was a broken sleep, interspersed with dreams which I don’t recall, one was a nightmare which I thought would make a good Stephen King novel, but it’s lost in my memories. Around seven I got out of the bed and went into the kitchen to make a pot of coffee. I went outside, the air was foggy like my mind, the ground was moist and cool, I picked up the paper and went back in, not that any of my neighbors saw me, but I took in the sparse winter trees, the thick fog and heard a faint bird. Sunday mornings are somewhat hectic, today Emma was reading the first of advent services and will be reading at each consecutive Sunday, what does advent mean? The fact Jesus is coming. Our morning message was by Reverend Elaine and it was powerful, how we can call out for God and we’re not sure if he is there, how we get caught up in the busy holiday season and lose that inner voice that still is seeking…I was struck with when she referred to a theologian, whose name I don’t recall, that is was good to mourn, that if we don’t mourn we project a bitterness and hatred on the world. After the service I walked through the woods, smelled the sweet warm leaves and headed to the beach. It was mild enough for a stroll, a young couple with a black lab walked up from the woods and we greeted each other, the dog sniffed in my direction without a care assuming correctly I was not a threat. I took some pictures and appreciated the silence of the water. The wind was light and I meditated for close to twenty minutes, I sat in a lotus position on a washed up tree, the water barely broke into the shore, the tide crept into the grass carrying small fish and a light milky froth. My intention was to call out to God, why does my wife have to battle cancer? Why does my youngest daughter have epilepsy, instead I used my breath, let those thoughts pass and breathed in with my tongue on the roof of my mouth. What journey are we on? When will I learn some of the answers? Ali is going to chemo tomorrow. I hope to take the train and get to work on-time. I’m planning to go to Pennsylvania on Wednesday and hope to make it there…the last time I attempted a trip Bella was taken by an ambulance to the hospital.
“Our life is an endless journey; it is like a broad highway that extends infinitely into the distance. The practice of meditation provides a vehicle to travel on that road. Our journey consists of constant ups and downs, hope and fear, but it is a good journey. The practice of mediation allows us to experience all the textures of the roadway, which is what the journey is all about. Through the practice of meditation, we begin to find that, within ourselves, there is no fundamental complaint about anything or anyone at all.” Discovering Basic Goodness by Chogyam Trungpa

My wife has cancer

My previous post was a review of Bob Mould’s book. It’s been a few weeks since I posted a real entry. My wife was diagnosed with cancer back in June, and I’ve kept a journal that may be too personal at this time to share. Ali is in a great position as per her oncologist, DR. Michael Pearl. We went into surgery with hope that it was just cancer of the uterus. Just cancer is an oxymoron, but for a woman if she is diagnosed with any cancer this is the one to have, it is highly treatable, once removed, there is no need for further treatment. But after a full hysterectomy, Dr. Peal took my mother-in-law and me into a small room, and shared what he saw.
“I don’t have good news.”
Ali had a tumor in her ovaries; the cancer broke through the wall of the uterus and grew in the ovaries; as well as another small tumor about the size of the tip of a thumb in her left pelvic area. This would categorize her cancer as a stage four. She started chemo a few weeks ago and is due for another session on Thursday. She will lose all of her hair, but she cut off most of it before our trip. Ali is also participating in a clinical trial, and we’re confident she is getting the best care and the cancer is contained and yet I’m worried. We’re receiving so much support and love from family, friends and work, but no one can really touch on the wave of emotions we are coping with.
A vacation is what was needed, a break from reality. These past two weeks have been spent in Orlando at Ali’s aunt and uncle’s house in Orlando. The house feels as if it has been dropped in the thick woods, through the trees I was able to see the lake as I sat at the pool side. I’m writing this at her Uncle Phil’s condo in Hilton Head, across the street from the Atlantic, where we spent yesterday morning. We had four days at Disney, in all of the parks and travelled to Savannah from here, to see the beautiful city. Our minivan is holding up very well on this trip. There’s been some napping and laughs, but most of all we’re together. I have seen how our kids make Ali laugh and how they have grown and developed into individuals. Bella is the youngest, but she’s the toughest. Joe is very close to Ali and has rarely left her side or site.
In a few hours we will drive up to Richmond to spend the night and to see the confederate capitol. We’ll be home tomorrow night and on Wednesday morning I will be back at work. We are doing fine and with faith we know all things are possible through God.