Wednesday, March 30, 2011

Courageous heart ...

Photo from  Flickr
I was recently told that I have a "courageous heart." I must confess, that these past 24 hours that I haven't felt like I have a very courageous heart, yet I know that often courage comes when we can acknowledge and embrace our fear. I met with my cardiologist at the Minneapolis Heart Institute yesterday. Another EKG was done and confirmed the premature ventricular heart beats I have been having. My doctor tells me that in a 48 hour period while I was wearing a holter monitor I had approximately 200,000 heart beats, and of those heart beats 53,670 were irregular. It's essentially an extra heart beat that starts in the lower chamber of my heart (ventricle). It's apparently not supposed to start there and it throws out this erratic heart beat which appears on an EKG as a major spike. She goes on to say that means that close to 25% of my beats are premature and irregular. Occasional irregular heart beats is common and nothing to be concerned about. Anything less than 10% they may just monitor and try to manage symptoms if there are symptoms. In my case, she says, we have to find out what's causing it as i'm over the threshold of 10%. Although my heart appears to be strong and sound structurally right now, these frequent irregular beats will damage my heart. Electrolyte levels can be a cause. That was ruled out as they tested my magnesium and potassium levels. I don't drink coffee (i have one cup of caffeinated green tea in the mornings), don't smoke, or consume any alcoholic beverages ... I have a very healthy diet, "slender" (the doctor's words) and exercise ... these all work in my favor she says.

So next step is a cardiac MRI and a meeting with an electrophysiologist. She tells me that sometimes what causes electrical problems in the heart is scar tissue or damage to heart muscle tissue. They will be able to see that with the cardiac MRI. If they find an area that is damaged that may be interfering with the electrical current and flow in my heart they will do what's called an ablation and remove the damaged/abnormal tissue. She mentions a medication that is sometimes used but in my case it won't work as I have a low resting heart rate and this medication often lowers one's heart rate. She did give me the go ahead to proceed with with the breast MRI guided biopsy so I have that re-scheduled for Monday afternoon. By next Wednesday i'm hoping i'll have the results from the pathology report and will know what the next steps are concerning the lesions in my breast.
My precious Ahnung

For the most part I think i've been handling the stress of all these health issues pretty well ... yesterday while meeting with my therapist I broke down though and cried. I guess it's more scary that i've been willing to admit. Even before I knew I had heart problems I started having sleep problems -- waking up every hour or hour and a half throughout the night. I didn't know what was causing it and brushed it off to worry or "something." In some ways it helps to know it's the palpitations in my heart that are waking me up. It's been about 2 and a half weeks now since i've had sleep problems. The symptoms get worse at night. Often times I feel like my heart is going to pop out of my chest. I lay in bed at night and I wonder how i will know if it's time to call 911 or take myself to the emergency room. Can I just sleep it off? I've learned to live with the symptoms ... they're tolerable and don't stop me from functioning and going about my day. My cardiologist has a stethoscope next to my chest. She asks "do you feel it?" I say "yes." She nods to affirm that she can hear the irregular heart beat. It's persistent and constant now. I wake up every morning now with an immense sense of gratitude for the gift of another day. As nights of restless and interrupted sleep string together I do find myself getting even more tired and fatigued. I find myself not feeling as brave and able to take on all that life has thrown my way ... but in my darkest moments, I always look to my precious dogs and I smile. I will continue to fight and I will continue to trust in God.

As I continue to prepare for more medical tests and procedures and waiting, I found myself reading one of my favorite quotes over and over this morning:

"I want to ask you, as clearly as I can, to bear with patience, all that is unresolved in your heart, and to try to love the questions themselves, as if they were rooms yet to enter, or books written in a foreign language. Don't dig for answers that can't be given you yet: you cannot live them now. For everything must be lived. Live the questions now, perhaps then, someday, you will gradually without noticing, live into the answer."

~ Rilke

Saturday, March 26, 2011

I carry your heart

Photo by Angie McKaig from Flickr.
As I was perusing through Flickr photos in search of a heart photo, I came across the photo on the left. And along with the photo was the posting of a poem 'i carry your heart' by ee cummings. I immediately thought of my dogs Ahnung, Missy and Mister. I imagined my heart being wrapped by their paws, by their unconditional love, by their belief that everything would be okay.

I met with my primary physician yesterday to discuss the results of my heart tests. On Tuesday I took a stress/echo cardio test and was told that it was 'normal.' The abnormal rhythms (ventricular bigeminy) were only happening while I was at rest. Once on the treadmill and exercising it went away. And no blockages found in my heart and that structurally it appeared that my heart was normal. So that was the good news. Somehow I knew though that what was of more concern would be the results of the holter monitor that I wore for 48 hours last weekend - it would capture every heart beat of mine in a 48 hour window and would be able to tell doctors just how often my heart was going into these abnormal rhythms. So yesterday morning I met with my doctor. I've been seeing her for 10 years now and we have a great rapport ... as she comes into the office and sits down she looks at me and says, "I got a copy of your holter monitor report from the heart center. You have a zillion irregular beats! ... okay, thousands!" She knows I always joke around with her. I ask for a copy of the report. She returns with the summary page and says, "I knew it was a lot and was thinking it was 5,000 irregular beats, but I was off by a zero. You had 53,670 irregular beats in a 48 hour period and a majority of them were ventricular bigeminy (meaning every other beat ) ... and you also have some couplets and triplets where these irregular beats are in succession." She goes on to tell me that I need to followup with a cardiologist and most likely an electro physiologist (a cardiologist who specializes in the electrical portion of the heart). Occasional irregular heart beats is common and nothing to worry about, she says. Mine, however, is pretty severe. Essentially, my heart is beating from the 'wrong' place (starting at the ventricle) almost every other beat. She said it is what's causing why I some times feel light headed and need to sit down. It's also what's causing the palpitations and probably waking me up in the middle of the night. It's also why my hands and feet are cold as the blood isn't being pushed through my body efficiently; it's probably also what's causing my fatigue. She says that she would want to know that with this level of severity of ventricular bigeminy does that put me at higher risk of ventricular tachycardia (which could then lead to cardiac arrest and sudden death)? I confess to her that I've learned to adjust to the symptoms of palpitations, fast heart beat and light headedness and have simply brushed it off in the past. Until I know more about what's causing the electrical problem in my heart I know I need to be more diligent about not only noticing my symptoms but not disregarding them. I assured her that if I felt chest pain, shortness of breath or even if something just didn't feel right, that I would call 911 or get myself to an emergency room.

So for whatever reason my heart is not functioning 'normally'. The two suspicious lesions found on an MRI remain in my left breast and the MRI biopsy is on hold now until my heart issues have been resolved or at least understood and I get clearance from a cardiologist. In many ways i've mentally and emotionally prepared myself for the big 'C' word ... Cancer .... I hadn't really thought about the possibility that my heart would simply give out. I guess the reality is, we never know when it will be our time, but I admit that I am much more aware of it right now as I feel the palpitations in my heart. I hear my doctor's words at Mayo as we were talking about cancer ... "we don't really know what sets of cancer." I hear the words of the doctor in ER last Friday, "we don't really know what triggers someone's electrical heart patterns to shift."

For now I am simply grateful for every new day I have. I meet with a cardiologist at the Minneapolis Heart Institute on Tuesday morning and will know more about what is going on with my heart and what are the next steps/tests I need to take.

I can feel the unconditional love of Ahnung, Missy and Mister as they wrap their paws around my heart. I feel the support and love of friends, family, health care practitioners and community.

I choose to live life fully and to risk loving, falling in love and having my heart broken. Because if today, or tomorrow were to be my last day I want to know that I gave it my all and that I loved with reckless abandon and that I lived a life of passion and purpose.

and to my sweet Ahnung, Missy and Mister ... thank you for carrying me in your heart :)

i carry your heart

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

-- ee cummings

Sunday, March 20, 2011


Photo from Flickr
I've decided to simply surrender to this health journey i'm on as it appears it will go in whatever direction it wants :) So last Friday I was scheduled to have my MRI guided biopsy for the two new lesions in my breast. As I was getting prepped for the biopsy the nurse took my vitals and not long after an alarm goes off. The nurse looks at me and says, "is your heart rate normally low?" And I say "yes." She asks, "are you a runner?" I respond with another yes, but tell her that I haven't been running in a few months and am actually taking a short break from working out. In the past year it hasn't been unusual for my heart rate to be in the 40s when i've gone to see doctors or prior to my previous surgical biopsies. I don't think it's quite gotten down to 36 bpm which is what the nurse told me was my pulse! My blood pressure was low (which is normal for me). "Are you feeling okay?" she asked. "I feel fine!" She asked me that a couple times and she got the same response :) Turns out she's a cardiac nurse so she said, "it's probably nothing but just to be on the safe side I want to run a mini EKG on you." As the print out came out and she looked at the print out of my heart rhythm, turned to me and slowly said, "I need to run this by a colleague. I'll be right back." Hmmmm, not a really good sign I said to myself. She returns to tell me that the doctor who was going to do my biopsy isn't comfortable doing my biopsy as there are abnormalities in my heart. I don't remember her exact words but it has to do with not just irregular heart beats but the frequency of these irregular heart beats and that somehow my heart isn't getting the electrical signal or something is blocking it ... fancy words of "preventricular complexities in a bigeminy pattern." As they sat and monitored me for a little while the nurse said that my heart was mostly beating in these abnormal patterns and would occasionally shift to a normal pattern. She kept asking me if I felt fine, and I kept saying yes! More than anything I was disappointed that the biopsy couldn't be done. My doctor said, "it's too risky. We don't know what's going on with your heart. I spoke to your surgeon (who ordered the biopsy and has done all my previous surgical biopsies) and she agrees that this must be a new condition because she had surgery as recently as last October and we would've caught it at that time. It's not good to have a medical emergency at any time but having one in an MRI room is a really bad place to have one. You are going to be face down in a tube, and i'm going to be sticking two large needles in you and there's a possibility you may bleed and with unexplained abnormalities in your heart, if anything happens, we wouldn't be able to get to you quickly enough with all of the equipment." She told me that as soon as I got clearance from a cardiologist she would get me in for the biopsy.

They continued to monitor my heart for a little while then I was told that I had to go to the emergency room to get a more indepth checkup and a full EKG and other tests. I continued to have a very low pulse and these weird heart patterns .... but I kept telling them I feel fine!! :) So after 7 hours in the hospital I was finally released but with a holter monitor attached to my body to capture every heart beat for the next 48 hours. On Tuesday I go into the Minnesota Heart Center for a stress test and whatever other test they need to do to try to figure out what is causing my heart to not get the proper electrical signals. I am hoping to get clearance from a cardiologist some time next week so that I can schedule my MRI biopsy.

I guess I wasn't meant to have my biopsy on Friday. Hopefully this new heart problem is just a minor bump in this health journey i'm on .... i'm coming to accept that this journey I'm on will have many twists and turns and that fighting it or resisting it isn't going to do any good. When I finally got home on Friday night and was lounging on the couch with my pups, I smiled. In some ways, it was almost comical as I thought to myself ... okay, what body organ is going to act up next??!! :)

A special thanks to my friends Laura and Paula for taking care of my furkids and for assuring me that I did not have to worry about them.

If there's one thing I have learned through all of this ... life is precious and life is short. I am grateful for every new day I have and for the many gifts of love, friendship, purpose, passion and creativity that surround me constantly.

Thursday, March 17, 2011

Health journey continues ....

Abnormalities in my latest breast MRI have taken me back into the rollercoaster of more tests and procedures. And with this next round I bring with me the calm, healing energy of the wild dolphins I was  honored to swim with last July in Bimini.

I met with my surgeon yesterday then drove down to Mayo today to meet with my doctors there to get a second opinion. My doctors in the cities are recommending an MRI guided biopsy. Originally the radiologist here said only the new lesion at the 12 o'clock position needed to be biopsied. My surgeon yesterday said she's concerned about the new lesion in my left breast at the 6 o'clock position and would recommend that lesion also being biopsied. It's larger than the written report says. Mayo confirmed that it is as large as the lesion at the 12 o'clock position (1.5 cm) which is concerning since it indicates new growth since my surgical biopsy last October. Mayo also confirmed that both lesions appear to be very similar and they would definitely recommend that both lesions be biopsied. Everyone is in agreement that the area in my right breast that lit up in the MRI is of no concern. It's very small and looks like my lymph node lighting up which simply means it's working. So ... tomorrow I go in for what will be my 5th biopsy in less than 2 years .... 3 surgical biopsies and now my second MRI guided biopsy.

I spent the entire day down at Mayo meeting with my doctors and waiting for them to review all my recent scans. What an incredible group of doctors. I am amazed at how knowledgeable, compassionate and willing to spend whatever time is necessary to ensure that I have all my questions answered and that I am given as much information I need to help me in my decision making process. They shared with me that I am an unusual case and that it's apparent with my history that there is something going on with the cells in my breasts. It's persistent and progressively getting worse ... with abnormal cells proliferating. My doctor went into this discussion on cells, DNA and my immune system. She also shared with me that as much research as Mayo is doing they do not know what triggers cancer and why one person can fight off cancer while another's genes somehow have some kind of mutation that prevents them from fighting off the cancer cells. She said that in my case, it's most likely a case of "when" and not "if" I get cancer based on all the pathology reports and surgeries I've had and the findings thus far. So I went on to ask, " so if it is a 'when' ... will the first case of cancer being found be DCIS or non-invasive cancer?" She said unfortunately not. In my case my cells appear to be taking on a life of it's own, and that's what happens with cancer. She said what's also concerning is that it's persistent. And not only is it persistent but it's progressively becoming more aggressive as she (and my surgeon did as well) shared with me how drastically different my MRI from a week ago is from the one taken 6 months ago. Where there was nothing 6 months ago there are now large lesions. She went on to say, she's seen cases where women have had nothing showing up on any tests and then something triggers the cancer to just explode and they are diagnosed with an aggressive invasive cancer. She's also seen cancer that has progressed slowly. She went on to say that whatever path I choose must be a very personal choice and be something that feels right to me -- there is no right or wrong she says. My case is a very hard one because i'm in a gray area. Essentially my body is screaming out to me that something is going on, but to this point I haven't been able to get all pathologists to consistently agree. I'm still on that borderline of atypical ductal hyperplasia and cancer but with every 6 months showing progression to more chaos in my cell structure and increased proliferation. All I know is that all of my doctors are very concerned and stumped by my case. I asked my surgeon in the cities and my doctor at Mayo if they have other cases like me. Both said no, that my case is definitely unusual. So I posed to her, even if I had a double mastectomy that doesn't mean that I won't get cancer (assuming I don't already have it) since we don't really know yet what we are 'fighting' against and what kind of cancer is just waiting to erupt inside of my body. She nodded. She did suggest that after my biopsy that I consider genetic testing which will test me for whether I have the gene mutation in my DNA that shows that I am unable to fight off certain kinds of cancer (breast, ovarian, pancreatic and melanoma).

So for now, I move forward with the biopsy tomorrow. The pathology reports will hopefully come back early next week and if atypia or cancer is found then I will need to have a surgical biopsy to remove the entire lesions and surrounding tissue to get a clean margin.

I head to Fairview Southdale tomorrow at 8 am and have been told to plan to be there the entire day. They are going to attempt to locate the lesions with an ultrasound in the morning then get me prepped for the MRI guided biopsy for the afternoon if they are unable to locate it with the ultrasound. As I go back into the tube for the MRI guided biopsy I will bring with me the dolphins ... the combination of being in a tube and the vibrations from drilling through my body to the lesions are body memories from last August that sends chills through my body. With two sites to go after I know it will be much longer. Hopefully this go around at least I won't have a hematoma :)

I believe in the healing power of prayer. I ask for my friends and family to send loving and healing energy not only my way but out into the universe for anyone who needs it.


Thursday, March 10, 2011

Self Portrait without a Face

I'm taking a photography class at MCAD which I have really been enjoying. I love how our teacher is so passionate about photography; how he asks lots of questions and makes us think, ponder, reflect on why we make (not take) photos; how he considers photography a spiritual practice; how he challenges us to be creative. Why do we choose to capture a particular image? What draws us to freeze ... to frame ... a particular moment? How do we draw out the personality, the essence and the spirit of the image, the person, the animal we are capturing. When we frame a photo what are we trying to communicate? What does it mean to us?

This latest go around of MRI results has thrown a curve ball in my life's journey. I once again am stepping into upcoming weeks of more tests/procedures, doctor appointments here in the cities and drives down to Mayo to meet with my medical team. As I reflect on my photography assignment for this week "Self Portrait without a Face" I realize that all of my life experiences make up who I am. I will be okay no matter what the doctors tell me or what the results of these upcoming tests and procedures reveal. Nothing can rip me of my essence, my soul, my spirit, my passions -- not even Cancer. So this morning I reflect on my self portrait ... who am I? What makes me feel alive? What burns the fire inside of me? What melts my heart? What matters to me, and in the end what do I believe is my purpose in this precious life I have?

So for my fellow friends and photographers, I invite you to join me in reflecting on this week's photography assignment:

"So for this week I want you to make a Self Portrait.  As always though, there is a can't show your face.  I want it to still be you, I want it to still illustrate you.....just not your face!  To start nailing perfect exposures, I want you to shoot in Manual mode (M), and put those Law of Reciprocity skills to the test!

Think of the many many different ways you can accomplish this, using shadow, movement, objects, costume, shroud, framing, gesture, paint, etc. etc. etc. 

Be creative..think through the problem.  Don't take the easy route out.  Consider your options. Could you take on a foreign role? Be the character you wish you were?  Use the amazingness of the medium to alter perception?  How can you tell me your story and emote a feeling uniquely, and without your face? Who are you?"

Tuesday, March 8, 2011

Let go ... needing to trust and surrender

Today began with some great news from work ... profit sharing, merit increase and bonus distribution ... and my new work iPhone had arrived to replace my blackberry. I was off to a great start and was hoping it would continue in that vein. I was of course anxious to hear about the results of the MRI from yesterday. Now in some ways I wish I hadn't gotten the call. As I was driving into the office I got a call from the hospital. The nurse called to tell me that there were two lesions in my MRI that were of concern. I asked if they were in the same area as the lesion I had last summer. She said, "no, these are new lesions" and the radiologist wanted me to come in for an ultrasound as soon as I was able. She said my surgeon would be calling me to discuss more of the specifics.

So late this afternoon my surgeon calls. She tells me that she was very discouraged when she read and saw the report. I've been seeing this same surgeon for almost 10 years now and just love her. I've had 4 surgeries with her. The first was to remove half my thyroid back in 2001 and in the past year and a half i've had 3 separate lumpectomies where she removed lumps in my breast. She's walked this journey with me for 18+ months. This was the first time I noticed some real concern in her voice and in her tone. She tells me that there are actually more than 2 areas of concern. The area that was of concern last summer has resolved. That was also the same area where Mayo did an MRI-guided biopsy and the lesion turned out to be benign. Then in October I had a couple areas removed from my left breast where there was significant abnormality in every pathology slide. She removed a large chunk from what she calls the 12 o'clock position. It's the same area where she's removed lumps for my past 3 surgeries. The MRI from yesterday shows a 1.5 cm lesion in the 12 o'clock position which indicates to her that this is new growth from last October. This is a fairly large lesion. There is also a lesion she says in the 6 o'clock position on my left breast and now a new lesion in my right breast around the lymph node. She says, the results of my MRI are 'busy'. There's a lot of activity going on. She repeats again that she's very concerned.

I go in for an ultrasound early Thursday morning. If they're able to see the lesion/tumor with the ultrasound they will go ahead and biopsy the areas. In the past, ultrasounds have normally never revealed anything for me. Same goes for mammograms. I see my surgeon next Wednesday to go over in more detail the results of the MRI and to discuss options and next steps as I will have more test results by then. There's a part of me that just feels like i'm in a daze. One moment I feel strong and positive and feel like I can handle whatever is thrown my way. Other times I simply just want to break down and cry. I am tired of these health issues. In the end I know I will be okay, no matter what. I have enjoyed the time i've had of feeling good and feeling healthy. If the ultrasound isn't able to detect the lesions i'm back to the gray area i've been in for such a long time .. on the other hand the ultrasound and possible biopsy could reveal a definitive case of cancer, and if it is what kind is it and what stage?

So at this moment I find myself praying for courage and for the strength to simply trust, surrender and let go. I'm heading out of town on Friday to attend a workshop "Transforming your Life" in Virginia. How timely for me to be going to this workshop. My hope is that I will be in a safe place to do some deep healing ... and while doing so I will be surrounded by a loving community where it will be safe to cry and to feel and to create space for whatever emotions surface without passing judgment.

When I get scared I always imagine myself being carried and protected by my Papa. I return to the photo of him carrying me when I was a little girl, and not long before he died. I imagine him holding me when I'm scared and I imagine him whispering to me, "it will be okay. I am right here with you." And I know he sent me angels ... when I hold onto Ahnung I can feel his energy and presence so strongly. She is truly my north star and I will hold on tightly to her as I step into what will be weeks of uncertainty around my health.

Monday, March 7, 2011

Holding onto my northstar

This morning I head to Fairview Ridges for my breast MRI. It's been 5 months since my last surgery and when they removed what my surgeon says were 'random samples' where every slide examined by the pathologist showed abnormality; and in the end where pathologists couldn't agree on whether I was still in the pre-cancer stage with atypical ductal hyperplasia or whether I had crossed over the line into non-invasive cancer. What there was agreement over was that there was definitely something going on with the cells in my breast and it was progressively getting worse. They couldn't definitively tell me that it was cancer; doctors at Mayo were concerned about surrounding tissue and that there may already be cancer (and even the possibility of invasive cancer); there's concern with the 'close surveillance' option I've chosen for now. With so many other major changes going on in my life these past 5 months I opted to go with close surveillance. Yes, I knew it was a risk, but it was as they say in the business world I am a part of ... a 'calculated risk.' I wouldn't change my decision. I have basked in the joy of feeling so alive these past months and also feeling like a brand new person physically as well. The doctors couldn't tell me for sure it was cancer so after weighing all that was going on in my life and what I had to face and deal with I opted to wait a few months. The doctors felt like it would be okay to do and understood where I was coming from. Truth is ... I needed a break from seeing doctors and going through medical procedure after medical procedure.

So today is another Marilou day .... going in for the breast MRI, seeing my therapist, spending time with my pups who are my angels and best healers, and going to my photography class tonight. Today I hold onto the unconditional love of my dogs, and I will carry their image with me into the 'tube' and I will carry their love, and the love of so many friends, with me over the next 48 hours as I wait for the results of the scan to come back. My sweet dog Ahnung (and yes, she is my north star) is a constant reminder to me that I will be okay no matter the doctor says.

Sunday, March 6, 2011


This morning as I was looking out my window into my backyard, after some quiet time, meditation and reflecting, it dawned on me ... I am happy; i am truly happy. I have emerged on the other side and when my friends kept telling me that the pain wouldn't last forever I found it hard to imagine. I knew in my gut I had to simply move through the pain. I can't run from the pain. I can't sweep it under the rug anymore. Well, I guess I could but i'm choosing not to anymore; i'm choosing to live my life differently now. I never knew it was possible to feel so much joy and happiness in my heart and to feel so alive. I know now that this has become possible because I finally listened to my own voice.

Doors are opening up. My life is full of possibilities. Incredible new relationships are forming. Existing relationships are deepening. I am discovering and re-discovering myself and it's a wonderful feeling to feel so alive, so full of joy and so full of hope.

The Call
~ Oriah Mountain Dreamer

I have heard it all my life,
A voice calling a name I recognized as my own.

Sometimes it comes as a soft-bellied whisper.
Sometimes it holds an edge of urgency.

But always it says: Wake up my love. You are walking asleep.
There's no safety in that!!

Remember what you are, and let this knowing
take you home to the Beloved with every breath.

Hold tenderly who you are, and let a deeper knowing
color the shape of your humanness....