Monday, May 30, 2011

The Lord is my Shepherd

I am now less than 24 hours away from my heart procedure. It's been a long journey for me. It's hard for me to believe sometimes that it was March 14th when my sleep problems first started, and then 5 days later my heart problems were discovered by 'accident' as I was getting prepped for my MRI guided breast biopsy. Since fall of 2008 it just seems like I have had one health issue after another. Feeling strong and healthy on a consistent basis feels like a distant memory ... maybe it feels so distant now because of continued sleep deprivation. Last night was a rough night for me ... crazy dreams and waking up every hour to hour and fifteen minutes. My heart feels like it's ready to pop out of my chest. I know my anxiety is up today as my procedure is tomorrow and the logical/analytical side of me processes what has happened to me over the past couple of years with health procedures. I've had 3 lumpectomies (May 2009, Dec 2009, Oct 2010) and none of them really scared me. What was more anxiety-provoking was waiting for the pathology reports. I've also had two MRI guided breast biopsies (Aug 2010, Apr 2011) ... and both times I was told by my doctors (once down at Mayo and most recently here in the cities) that there was a less than 1% chance of complications, primarily bleeding problems. And both times I had bleeding problems and a hematoma. Then in April I'm told by my cardiologist that I have ventricular bigeminy and that 25% of my heart beats are coming from the ventricle and not the sinus node ... and in a 'routine' cardiac test done prior to meeting with a electrophysiologist (a cardiologist who specializes in electrical rhythms of the heart) they discover an 'incidental' finding ... abnormality in my left ventricle leading to the diagnosis of left ventricular noncompaction, a disease only .1% of the population gets ... and a disease with a lot of unknowns and uncertainties and not the best prognosis. So here I am the night before my heart procedure and the logical part of my brain tells me that I haven't been on the 'right' side of the odds. I've fallen into the less than 1% with complications and being diagnosed with a rare heart disease. My doctors at Mayo and in the cities have also called me an anomaly with how pre-cancer/cancer cells are developing in my breast. My doctors at Mayo tell me it's a question of when I will get breast cancer and not if I will get breast cancer. They're not even sure if I don't already have it but they can't confirm it. All they can say with certainty is that the cells in my breasts are changing and they believe that something in my immune system has lost its ability to identify abnormal cells. But my health journey took a detour when heart problems popped up ... breast cancer is now secondary to my heart problems.

So here I am working hard to counter the fear and anxiety that at times consume me .... and I ask myself, why am I so afraid? What am I afraid of? and the conversation with myself continues ... "it must be death ... but why?" I've always imagined a time when I would be reunited with my father, and yes my beloved pets (Splat, Shen and Shadow). I believe in God and yes, I do believe in heaven or some type of existence that is beyond our earthly forms. I imagine being held again by my father. It's what has kept me going during many of my darkest moments. I have all my affairs in order ... will, healthcare directive, and financial documents ... that feels good. I've had conversations with friends and family about what I want to have happen ... but I think what scares me and what causes me anxiety is my unwillingness to simply surrender to what is meant to be. This morning as I was meditating I meditated on the 23rd psalm which has often given me comfort .... I repeated the psalm over and over in my head, and then read it out loud ....

The Lord is my Shepherd; I shall not want.
He maketh me to lie down in green pastures:
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me.
Thou preparest a table before me in the presence of mine enemies;
Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,
and I will dwell in the House of the Lord forever.

Only when I am able to completely surrender my will over to God am I able to feel peace in my heart. I struggled for many, many years to come to terms with a religion and a faith that violated a very sacred boundary of mine and ripped me of my innocence and trust. After decades of soul searching I came to the realization that God is in each and every one of us ... in all living beings. It wasn't God that violated that trust ... it was a human being. I can either choose to believe in a God or not. I can either choose to let  past hurts close my heart to fully experiencing life and love, or I can open myself up to living, to loving and risking And there are also many paths to the Divine, and we touch the Divine and experience the Divine in so many ways. For me, it's in moments when I open my heart completely and fully to love and be loved; it's in the eyes of my beloved animals (Ahnung, Missy and Mister); it's in the pleading eyes of animals needing to be rescued; it's when i'm touched by a wild dolphin; it's in a hug or an embrace; it's when I'm sitting quietly in a chapel, or in my meditation room; it's when I close my eyes, tilt my head back and feel rain drops on my face; it's when I look up in the night skies and see the stars and the moon .... 

So today I choose to place all my fears and anxiety in a small container and place them in the hands of God. I will step forward into the coming days (and tomorrow's heart procedure) with love in my heart and I will surrender my will over to God ... to the Divine ... I will trust that whatever is meant to be will be. I will welcome and embrace the love and prayers of friends of family.

"The light will always return to chase away the darkness, the sun will always come out again after the rain, and the human spirit will always rise above failure."

~ Harold Kushner

"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly. "

~ Buddha

Thursday, May 26, 2011

Letting Go

Photo from Flickr
This is the longest i've gone without writing on my blog. So much has been going on, physically and emotionally. For the first time I simply felt the need to recoil, to be with myself and my feelings and to not share so much. But this morning I feel the desire to emerge. I have begun tapering off of my heart meds as I prepare for my heart procedure on Tuesday. The symptoms have been bad but they are getting worse now. I have been having trouble sleeping; my heart wakes me up in the middle of the night every hour or two; my body goes through spurts of feeling physically desperate for rest and relief. The last time I had a good night's sleep was March 14th.  I have been waiting for this procedure for 6 weeks and the time is finally arriving. I am normally not phased by surgery or any medical procedure. This time around I realize I am scared and I have anxiety ... maybe it's because I am exhausted physically, maybe it's because this procedure entails going into my heart, maybe it's because i've had bleeding problems, or maybe it's because I just haven't been so lucky in the health arena lately and I fear falling into the less than 1% of patients who end up with complications in this procedure. When I close my eyes and fall asleep Tuesday morning as they inject the anesthesia into my veins there will be a part of me that will feel relief because I will get to rest and sleep deeply.. something I haven't had the chance to experience for so long; there will also be a part of me that will be scared .. wondering and hoping that I won't fall again into the less than 1% of folks who have issues. I will imagine Papa holding me and protecting me. I will imagine Ahnung by my side. I will imagine the love and support of so many friends and family holding me up.

So early Tuesday morning a good friend of mine will take me to the hospital and she will wait for me as I'm undergoing my heart procedure. I've been told the procedure will take anywhere from 2 to 6 hours. That if the electrical problems are coming from the right ventricle (as they suspect) that they will be able to identify the source soon after they enter my heart with the wire and they will burn that area of my heart. If they discover I have electrical problems in my left ventricle they will then have to go through my heart and it will take much longer, and it may also mean that there is some relation to the left ventricular noncompaction heart disease I have. My doctor also says on rare occasions the source of the problem is outside the heart and in that case he said they won't be able to fix the problem as they will be inside my heart, and that a follow-up procedure/surgery will have to take place.

I am hopeful that this procedure will take away the symptoms I've had for the past 2.5 months and that I will finally be able to sleep through the night. I am having to practice letting go .... really, truly letting go. It seems as if i'm having to practice letting go on multiple levels and the irony of it all, is that when I am able to let go and loosen my grip on wanting to try to control some outcome or some part of myself, that I am able to find myself, find peace and to feel more alive than ever.

"To be fully human, fully myself,
To accept all that I am, all that you envision,
This is my prayer.
Walk with me out to the rim of life,
Beyond security.
Take me to the exquisite edge of courage
And release me to become."

~Sue Monk Kidd

Saturday, May 7, 2011

Let Life Happen to You

"What should I say about your tendency to doubt your struggle or to harmonize your inner and outer life? My wish is ever strong that you find enough patience within you and enough simplicity to have faith. May you gain more and more trust in what is challenging, and confidence in the solitude you bear. Let life happen to you. Believe me: life is in the right in any case."

~ Rainer Maria Rilke, from Letters to a Young Poet

Love this! Let life happen to you, and for me it's also about being grateful for all that life offers. I took yesterday off from work. My day began with an early morning meeting with my estate planning attorney. I have spent the past week reflecting and having conversations with friends about the legacy I want to leave behind, and making arrangements to ensure that my furkids (Ahnung, Missy and Mister) are well cared for should anything happen to me, and picking the charities that have touched me in some way  ... it's ironic that as I'm putting all my matters in order and reflecting on death that I feel the most alive. It can be difficult to have conversations about death yet it is something I believe is essential, and for me personally, something that will give me comfort to know that I have my matters in order before my heart procedure at the end of the month. My life is full of purpose, meaning, connection and love. How could I possibly ask for anything more than what I have in this moment? 

Wednesday, May 4, 2011

Living on the edge

Photo from Flickr
I woke up this morning at 5 am to my heart doing what felt like major cartwheels and to my heart feeling like it was going to pop out of my chest as I struggled to get a full breath. "Is this it? Am I about to go into sudden cardiac arrest? Am I just overreacting? This will just pass. I don't want to make a big deal out of nothing. If this goes on i'll call 911" .... and on and on and on, my mind goes as I wait to see if I get chest pains, even though intellectually I know that women often don't get chest pain like men do. I don't know what a heart attack feels like, or the moments leading up to it? If I make the wrong decision, the consequences could be fatal ... I know that now. But my heart has been doing bizarre stuff lately and most of the time it's just gone away and I've been fine, so how do I know when I need to take action and really do something, i.e. get medical attention?

So I'm realizing this morning that it sometimes feels like i'm living on the edge, or walking on a ledge ... a ledge that's been created from the various bits of pieces of information fed to me along with symptoms my body has: I have an electrical problem in my heart (a pretty significant electrical problem) -- the doctors don't know what causes it; they don't think (but they're not sure) that it's related to the left ventricular noncompaction (LVNC) disease I have that's the cause for the weakening of the left ventricle in my heart. They don't know much about this disease so prognosis is uncertain. It's a serious disease that has been known to lead to sudden cardiac arrest. Electrical problems of the heart and arrhythmias are associated with LVNC. Yet my heart right now is functioning normal even though structurally there is weakening. The heart procedure at the end of the month will hopefully take care of the electrical problem in my heart. If it returns, however, it is most likely related to the LVNC. Physically, even though the beta blockers have helped and i'm at least getting some sleep (for which I am extremely grateful for) I can still feel the erratic beating of my heart ... the extra heart beats coming from my ventricle, where heat beats aren't suppose to start from.

I don't want to make a big deal about all of this. I want to keep living my life as normally as I possible. But how do I know ... how do I know when it's serious enough to call for medical help? Most of the time the symptoms just pass, and I'm okay. But what if I make the wrong decision? If only I could have a magic sign that flashes in front of me that says 'Marilou ... NOW you need to call for help! NOW you pick up that phone!'

This morning I took a gamble, and it worked out okay. My prayer for today, "God give me the wisdom and the insight to know when I need to act ... give me peace and comfort to not worry about every step I take and to trust in my life's journey wherever it leads me ... and fill my being with an acceptance and a true sense of gratitude for every moment I have."