Happy to be Home!

I am so happy to be home! I am also so grateful for the love and support I had as I went through my heart procedure this past Tuesday. What an incredible team of friends who helped me in caring for my 3 furkids and also supporting me while I was in the hospital ... my friend Vicki picked me up at 5:15 Tuesday morning to take me to the hospital and to be there while I was undergoing the procedure and to keep my family and friends up-to-date. The procedure itself only took 2 hours as my heart was cooperative and started firing off irregular heart beats right away, making it easy for them to locate the source of the problem. There was an area in the right ventricle of my heart that was causing the problem so my doctor burned that area in my heart. I remember getting loopy as they wheeled me out of the prep room and into surgery. I remember seeing all this fancy equipment and voices ... and then the lights went out for me. When I awoke I was being wheeled back to recovery. Everything seemed foggy to me. I remember someone saying that the procedure went well. It was hard for me to form sentences or to talk. I remember seeing my friend Vicki waiting for me in recovery as my bed was wheeled into the room. My chest was hurting and my heart felt like it was on fire. The nurse asked me how I was doing ... i mumbled that I felt a lot of pain in my chest. I remember seeing my doctor and he said to give me some pain meds for my heart which they injected into my IV. Shortly after they injected the meds the right side of my body started to tingle and get numb. I asked the nurse "am I supposed to feel tingly sensations?" She asks, "where are you feeling it?" I replied, "in my right arm." She calls my doctor back who then asks me to squeeze his hand first with my left hand then with my right hand. I squeeze hard with my left hand. I can't feel my right hand - it feels numb and weak. "Squeeze as hard as you can" my doctor says. In my head i'm saying "i'm squeezing as hard as I can." He asks me to lift my right arm, my right leg. I can't lift them. I am overwhelmed with emotions. I am just coming out of the anesthesia, my heart is still burning with pain and I can no longer feel the right side of my body. Vicki is holding my hand and rubbing my head. The nurse is lovingly asking me how i'm doing. Tears start to fall. What's happening? Did I have a stroke? I can't stop my tears. I am grateful for my friend Vicki and the nurse who gently wipe the tears from my eyes and continue to comfort me.

My doctor says he is going to have a neurologist come in to see me. In 5 minutes a neurologist shows up. He asks me to do a bunch of things. My left side is strong but I can barely feel my right side. I want to just cry. I can answer his questions. My brain seems like it's working fine so why can't I move the right side of my body? Why do I feel so weak? He tells me that he's going to send me down for an MRI of the brain/neck. In less than 10 minutes I am being wheeled down and within minutes have been transferred over to the MRI machine and am laying face up, motionless, for 45 minutes as I hear loud noises, feel my body vibrating and feel contrast being shot through my veins.

I am wheeled back to recovery where I remain for about an hour before I am taken up to my room. The pain in my chest has dissipated -- the drugs must be working. My doctor reminds me that they burned my heart so it's not surprising that I feel pain. I start noticing sensation in the right side of my body slowly coming back. The neurologist comes to tell me that the MRI comes back negative for hemorraghing and stroke. I am so relieved. He is able to tell the sensations are starting to come back and tells me that it could be my body reacting to the drugs. He tells me, with a smile, your brain is normal and I can give you a certified copy of that so that you can show that to your friends! :) It takes a little while but eventually the strength and sensation return to the right side of my body.

When I am up in my room the nurse tells me that I can get up to go to the bathroom. I have been laying still for several hours and the entry site on my leg that they use to get to my heart should now be clotted. I slowly stand up from my bed and shortly after I am up my nurse looks at me with concern and says 'you're bleeding. I need for you to sit back down on the bed'. I look down at my right leg and my gown is drenched with blood, there is blood on the hospital floor and my leg has blood dripping down. I didn't feel anything because there is still some numbness in my right leg. The nurse has me lay flat on my back. I'm feeling lightheaded and somewhat nauseated and like i'm going to pass out. The nurse applies pressure on the incision to stop the bleeding and they start fluids on me again. After that little bleeding episode I am back to bed rest and am told it will be another hour or so before they will let me try to stand up again. It doesn't surprise me that I had bleeding problems again ... they tell me it's uncommon to have bleeding problems but unfortunately I seem to fall into the category of the minority .... fortunately they only went through a vein (and not an artery) so stopping the bleeding wasn't too much of an issue.

As the day went on I started feeling much better. I regained full sensation of my right side, the chest pain completely went away and I had no more bleeding episodes. I was also told that my heart was beating in sinus rhythm, meaning normal rhythm. There were only occasional PVCs, which is 'normal.' I was able to sleep for 5 hours straight.

My cardiologist came to see me the next morning to check on me. He's such a great doctor and I feel so blessed to have him on my healthcare team. He said I gave him a scare with the  numbness on my right side and he was concerned that I had had a mini-stroke. I thanked him profusely for everything and for helping me get back to my normal heart rhythm so that I can now sleep through the night! For me this is the greatest gift after not having uninterrupted sleep for 2 and a half months! I will go back to see him at the end of July for a 2 month followup. We hopefully have one of my heart issues resolved for now and he said he will just  need to keep monitoring me closely for my other heart issue (left ventricular noncompaction - LVNC).  I ask him more about what we can do for the LVNC and if it is progressive. He says it is progressive. Eventually the structural weakening in my left ventricle will lead to weakening of my heart. There are also other things he said he needs to watch for such as arrthymia in the top chambers of my heart which could lead to strokes; he also needs to closely watch for electrical problems in the left ventricle of my heart which is more concerning that electrical problems in my right ventricle. I ask him how long will it take for my heart to weaken? He tells me it won't happen overnight ... "a year, two years, maybe ten, maybe more ..." The key is to stay on top of it. In my head, I say to myself ... this all sounds so familiar with the journey i've been taking to deal with the cancer/pre-cancer in my breast.

For now, I am simply grateful that the electrical problems have been resolved. I am grateful for the incredible people I have in my life ... and of course, my beloved animals (Ahnung, Missy and Mister) ... I am grateful to be able to put my head down on my pillow and fall asleep.

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

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

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? 

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."

Namaste

Through my volunteer work with Pet Haven I've been blessed to meet so many wonderful people. One of them is a very talented artist Cindy whom I have commissioned to create personalized leash holders for my pups. Shortly after I moved into my new home and as I worked to create a space and a feeling of me, I found myself wanting to fill my home with art and photography .... the word 'Namaste' has meant so much to me for quite some time. Yoga Journal does a beautiful job describing the meaning of Namaste:

"The gesture Namaste represents the belief that there is a Divine spark within each of us that is located in the heart chakra. The gesture is an acknowledgment of the soul in one by the soul in another. "Nama" means bow, "as" means I, and "te" means you. Therefore, Namaste literally means "bow me you" or "I bow to you."

To perform Namaste, we place the hands together at the heart charka, close the eyes, and bow the head. It can also be done by placing the hands together in front of the third eye, bowing the head, and then bringing the hands down to the heart. This is an especially deep form of respect. Although in the West the word "Namaste" is usually spoken in conjunction with the gesture, in India, it is understood that the gesture itself signifies Namaste, and therefore, it is unnecessary to say the word while bowing.

We bring the hands together at the heart chakra to increase the flow of Divine love. Bowing the head and closing the eyes helps the mind surrender to the Divine in the heart. One can do Namaste to oneself as a meditation technique to go deeper inside the heart chakra; when done with someone else, it is also a beautiful, albeit quick, meditation."

So I asked Cindy if she could create a mosaic for me with the word 'Namaste.' I wanted it to hang above a doorway that is located in the middle of the main floor of my house. It is also the doorway that leads downstairs to my den and to the master bedroom. It is the doorway that connects all spaces in my home and for me also connects me to spirits in physical and non-physical form. It is a word that reminds me of the sacredness of life and our connectedness. It is a word that reminds me to come from a space of love, understanding and compassion. It is a word that reminds me of the Divine, present in each and every one of us.

And in my downstairs bathroom I asked Cindy if she could create a mosaic with the word 'Breathe'. My bathroom is blue and I have filled the space with dolphin energy. Dolphins have played a very significant and healing role in my life's journey. Karyn Kedar in her book 'Dance of the Dolphins' does a beautiful job articulating what I feel in my heart about these precious creatures ... "the dance of the dolphin, as it gracefully navigates water and air, tells me to find balance because life is a mystery of contradictions, worlds I know and those I don't, realities I can see and those I can only sense. We live with paradox and ambiguity. We live in our minds and in our souls. We live in our own world and in the world of all. And all the while we dance, sometimes with grace, and sometimes not...."

And when I was blessed last July to swim and be touched by wild dolphins in Bimini, Bahamas I watched them swim and breathe with such grace. It was mesmerizing. Often, I forget to take deep breaths ... to breathe from my belly. Breath is the source of life.

Thank you Cindy for creating these very personal art pieces for me .... If you'd like to check out a few other pieces of work that Cindy has created check out her blog. You can also reach her at ccaverin68@gmail.com.

Here are photos of the personalized dog leash holders she created for my "kids" .... 

To know, or not to know ... that is the question

On Wednesday I got a call from my doctor (the electrophysiologist). He wanted to give me the results of my latest heart test (echocardiogram). He also consulted with his colleagues to review my cardiac MRI and to confirm if they really believed I had 'left ventricular non compaction' (LVNC), a rare heart disease that apparently is found in only .1% of the population. The diagnosis of LVNC was confirmed. The echo revealed that my heart is functioning normally ... that's the great news! He indicated that structurally there is thickening of my heart muscle in the left tip of my left ventricle. That's the not so good news as it means there is some damage to my heart. At some time, it will begin to impact the functioning of my heart. The goal is to slow the damaging of my heart. For now, he wants me to begin aspirin therapy (once i get clearance from my hematologist that I don't have any bleeding disorders) and he says they will need to monitor me closely seeing me every 3 - 6 months and running tests to check the functioning of my heart and the progression of structural damage. He reminds me that exercise is good, but no competitive sports or races. The PVCs (preventricular contractions)/extra heart beats which have caused my sleep problems will be addressed at the end of May when I go in for an ablation. The beta blockers i'm taking have been helping for which I am extremely grateful. My doctor does not thinking that the PVCs which appear to be coming from my right ventricle have anything to do with the LVNC in my left ventricle. If they discover during the ablation, however, that there are PVCs coming from my left ventricle that could possibly indicate further deterioration of my heart and increased risk.

So how is all of this affecting me? I'm often asked that, and I often ponder that myself. Surprisingly, I am actually okay with it. This rare LVNC disease is something I have probably had all my life. Somehow, it's 'manifesting' now .... so now I simply know and am aware of this disease. I am also aware that this is a disease where there is so much the medical community doesn't know, and from what they do know, it's a disease with poor prognosis. The reality though is that it doesn't change anything because all I have is today ... all any of us have, is today and this moment. I have a choice on how I choose to accept this latest news. I am also very much alive today and in this moment. I feel very alive and nobody can tell me anything that will change how I feel on the inside. It doesn't mean i'm not cognizant that my heart, structurally, is weakening. But functionally, it's strong and I can keep doing things that will continue to strengthen my heart and my soul.

I admit that I have a new perspective on life ... I am putting everything 'in order' (it's something I should've already one!) ... I met with my estate planning attorney and before I have my heart procedure at the end of May everything will be in order. What an interesting exercise to actively plan for my death and to really think through what is important to me and the legacy I want to leave behind. I know it will give me comfort to know that I have all my matters in order. I also know that every morning when I wake up I am truly grateful .... and I thank God for another day. Today, I am even more grateful because  it is an absolutely beautiful spring-like day here in Minnesota and I have the day off from work to simply enjoy this gorgeous weather ...

"Go within yourself and probe the depths from which your life springs .... " ~ Rilke