I am feeling especially sorry for myself today. I can not remember the last time that my health or Matt's was not on the forefront of my mind. If it is not our health that I am concerned about it is our financial situation. I refuse to call it poor, as I do believe I am one of the richest people in the world. I truly am blessed with many things. Not with material things, but with love.

I can not remember the last time I had an entire relaxing day or even a relaxing afternoon. I guess, probably in July. For a while we made a boat trip on the St. Croix river a weekly priority. Then I got to weak to do it. So now it is mid-October and I have just spent the last 3 hours crying. Sometimes I just need to allow the sorrow to flow from my body. To admit that sometimes I am scared, weak, terrified, overwhelmed. I also need to remind myself that is okay to have these feelings.

This is not how I pictured my life going. I guess if I could find a way to give up expectation then I would not be disappointed. How do I do that without giving up dreaming, goals, plans for the future? How am I supposed to truly, let go and let God? How do I live in the moment and still be a responsible parent? If I am not planning for the future how will we get by? It seems like such a great leap of faith, to actually live just for today, for this moment, in the beauty or hardness of this second.

The picture I have posted with this is by Jane Evershed. While I was conquering cancer, 15 years ago, I did a lot of volunteer work with an organization called the Women's Cancer Resource Center (WCRC). WCRC was a GREAT support to me. They had a yearly event with entertainment, food, silent auction, dancing, a live auction, friendship and joy. It was so much fun. An amazing way to celebrate life. I was very active in the planning of the silent auction. Every year, Jane Evershed donated one or more signed and framed prints. I fell in love with her work. My Mother made sure I got those prints. The first one was "The Great Leap of Faith", pictured above. There is a poem that goes with it.

The Great Leap of Faith

Its yours-
take it!

Leap like a lunatic over the chasm below
Erupting as you go
Your true self awaits you
Now you will know

I chose to write about my sorrow tonight in hopes that I could try and turn it around. It is okay to have the sorrow, I allow myself that. I do need to carry on with my life however, enjoying the time that I have here on this beautiful planet. As I was writing, I recalled this picture. Thank you, Jane Evershed. I will try and take The Great Leap of Faith. I will try and live in the moment and I WILL do something fun and joyful everyday. That is a promise I am making to myself, do at least one incredibly joyful thing everyday. I deserve it.

Grateful

We have a tradition in our house. When we sit down and eat together we do "Grateful". We go around the table and each of us says at least one thing that we are grateful for. For the longest time, Adelaide was grateful for "our wonderful geese". Then it was for "this wonderful lunch", it did not matter if we were eating breakfast,lunch or dinner. Now she actually comes up with different things most of the time.

I love that we have started this tradition in our household. It makes us feel better on good days and has a way of really pulling us up if we are having a down day.

Here are just a fraction of things I am grateful for today.

• I am grateful for my beautiful daughter, her kindness, her health and her love.
• I am grateful for my husband, who stands by me through thick and thin and loves me unconditionally, a very rare thing in this world.
• I am grateful for health insurance.
• I am grateful for a great team of doctors at the University who are trying to decipher what is going on with me.
• I am grateful for a Mother and Father who love me and pick up the slack when I can not keep up.
• I am grateful for thrift stores.
• I am grateful for our dogs and our cats who give us so much love.
• I am grateful for my extended family and my friends who help to support me and give me encouragement.
• I am grateful for our two dogs who have had nice litters of puppies.
• I am grateful for the grants we are getting to help fix up our home and make it more handicap accessible.
• I am grateful for our farm animals, the eggs they give us and that they give their lives so that we can eat.
• I am grateful for the flowers Matt and Adelaide picked for me.
• I am grateful that I can walk.
• I am grateful for my fingers and my tongue and my hair.
• I am grateful for the parts of my body that operate without assistance.
• I am grateful for my heart, despite all its troubles and radiation damage, it still keeps beating every day, allowing me to wake up and enjoy all the things I am grateful for.
• I am grateful that we have vehicles that run.
• I am grateful for the big shade tree in our front yard.
• I am grateful Adelaide has a swing set to play on.
• I am grateful for life.
• I am grateful that I woke up today.
• I am grateful that I got to sleep for 16 hours.
• I am grateful I can hear.
• I am grateful for Frannie.
• I am grateful that my daughter has gotten the chance to meet some of her great grandparents.
• I am grateful for God and the workings of the Universe.
• I am grateful for heating assistance.
• I am grateful for all of the social services that are available that have kept my family fed, warm and in our home.
• I am grateful that I have had a good education.
• I am grateful for the roof over my head.
• I am grateful for warm tea.
• I am grateful for the prolific garden we were blessed with this year.
• I am grateful for community acupuncture and our amazing acupuncturist & friend, Mary Borer.
• I am grateful for my grade school music teacher, Larry Dittberner, who taught me to sing, dance and play a little every day.
• I am grateful for clean water.
• I am grateful that we live in such an incredibly beautiful place in this world.
• I am grateful that I have gotten the opportunity to travel to every state in our nation and 7 foreign countries.
• I am grateful for LIFE, I may have already said this, but wow, I really am grateful for it.
• I am grateful for love.
• I am grateful for fresh tomatoes.
• I am grateful for the 13 kisses Adelaide just gave me, the big hug and the big smile.
• Now it is time to go give my husband 13 kisses, a big hug and a big smile.
• I am grateful they are here.
  
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Home, Family, an AMAZING Mother and Chyloptosis

It is nice to be home or at least at my Mom and Dad's house, which really is my families second home. I was discharged from the hospital this afternoon. Slept the whole way home in the car. My Mom and I stopped at the thrift store before heading home, something cheery and a change of scenery. Friday is free bread day. I got a cute sweatshirt for $2, a grocery bag full of books for Adelaide for $2 and a mug for a quarter. Also two loaves of multi grain bread, a pack of nummy donuts and a pack of cherry fritters for free. Gotta love the thrift store!

I got to take a nice hot bath when we got back. I was just about finished and Matt and Adelaide arrived. Adelaide climbed into the tub with me and we had some nice family time. Then went outside, played on the swing set, played hide and seek for the first time with Adelaide and did a little walking around the yard.

So nice to be with my family. I have grown weary of the hospital. Three inpatient stays in the past couple months is plenty. Not to mention ER visits, doctor's appointments and lab draws.

They have still not figured out exactly what is going on with me. As far as my heart we have kind of figured out that I operate in a 2 pound window. Two pounds under/dry weight and my kidneys fail. Two pounds over and I go into heart failure. Let me just say that this a very hard tightrope to walk.

They think that something is going on with my lungs that is not caused by my heart. They have numerous blood tests running in the lab. They also have some sputum samples that they are attempting to run. The problem is that what they are testing for, Chyloptosis, is so rare, that nobody really tests for it, not even the Mayo. So they are having to try and figure out the testing parameters. Chyloptosis, if I have it, would also be something caused by the radiation. It is when there is a miscommunication somewhere, a fissure of sorts, between the lymph system and the lungs. The lymph system carries triglycerides and they somehow get in to the lungs. The lungs get inflamed and produce these airway castings, that look like worms. Every so often I cough one out. But the main problem is that I can not stop coughing and have severe shortness of breath. I really hope that they can figure out what it is so that we can move forward and treat it appropriately.

I am trying to focus on the positive. I am home. Now it is just waiting for this round of tests to come through. Praying hard that they find some answers with out having to endure another hospital stay.

I do have to say how incredibly lucky I am. My wonderful, fabulous, amazingly dedicated Mother spends every moment with me in the hospital. She is my friend, my Mom, my punching bag, my shoulder to cry on, my rock. We always laugh and manage to have a good time. Thanks Mom! I Love you so much.

Room 617 bed 1

My new residence, for as long as I need to be here is Unit 6Charlie, Room 617, Bed 1. I have been in this room before. I could tell immediately upon getting into the bed, by the paint scratches on the wall. There are 4 or 5 of them right by the outlet.


It was exactly one week from discharge, after a 9 day stay, that I have now returned to the University hospital again. Same problem. Hopefully a different answer. My weight has gone down by 8 pounds since I returned home. Another 5 or so to go and all of the water weight should be off.

According to the last theory, the lung issues should be disappearing. Water in my lungs caused by too much fluid on board. Well, that does not seem to be the case. The pulmonolgy team came in this evening to tell me that "they had an idea", one of the docs, a pulmonolgist for ten years, has never seen a case of this "idea". I guess that does put me into the same place that I often am, the bizarre, weird, off the wall medical case. I am not sure how I feel and am trying to stay in the present moment. "Don't get worked up, don't get worked up, it will be okay, whatever it is, it is better to know then to not know, then we can hopefully find a solution. It's okay, really it is."

I have learned a lot of new things over the past three months regarding my health. Only a fraction can be touched at a time or the reality will tear my soul apart. My tricuspit valve is leaking, most likely due to the leads from my pacemaker that go through the valve. If they get a little out of place then the valve does not close properly and causes more backflow & pressure in my heart and lungs, leading to increased heart failure. I already have high pressure in my heart.

I have restrictive cardiomyopathy. Which means that my heart is not able to stretch as it should. This is caused by the scaring from the radiation. My heart as I already knew is slightly enlarged and does have some areas that do not work well do to the heart attack.

I also have restrictive lung disease. 40% of my lung function is gone. But the good news is that the 60% that works seems to be fully functioning, or maybe not. This is really the beginning of my journey with the pulmonologists.

Some of the biggest news I am not sure how to place. Where it should go in my soul, my heart, my brain? I am a candidate for a heart transplant. Hip Hip Hooray. Yay, it is a possibility! Opposite side of the coin..damn it, why do I feel the need to be happy that I could actually get a heart transplant?? How do I celebrate this? Mourn this? Place it where it needs to go? I ask the Universe, our dear Mother Earth, God in helping me to deal with this. There was a long period of time that I believed that I was unable to have a heart transplant because it would not "take" due to all of the scarring from the radiation. This left me with the option of, well, nothing. If my heart gives up, that would be it. Now I have another choice. I can try and start over, switching as the docs say "from one disease to the next" but none the less, still with the gift of continued life.


It looks as though it could be pressing to the forefront faster than I thought. I used to think that a heart transplant, if I could even get one, would be YEARS away. Now, they are starting to tell me the order of things. What tests I would need. What kind of docs I would need to see first. How it works. What my BMI would need to be in order to be a "good" candidate. Realities. Possibilities. "Heart Transplant" have become daily words in my vocabulary.


It is time now to wheel my IV pole with a heparin drip back to my room and settle in for the night. I think I will take another little walk around the circle before I go back. That will round out my self prescribed six walks for the day.

To all I send blessings of health and the wish for a peaceful soul.

Blessings of New Life

Our sweet dog, Sundance, gave birth today to 3 beautiful puppies. Two boys and one girl. I had her kennel right next to my head, in bed with me. She was so quiet, she birthed two all by herself and never woke me up. When I arose, I found the puppies and panicked, being that Sundance is a first time Mother. The power of nature is AMAZING!! Sun had cleaned off both puppies, chewed the umbilical cord off of one, which had already found its way to the nipple all on its own. It was having its first meal. The second was still attached to the placenta, but the bag was cleaned off. I find it absolutely spectacular how both Mother and baby new exactly what to do. No help, no hospital. Just the awesome power of nature and intuition at work.

I called for Matt and he came to help. He helped her deliver the third puppy, cleaned her up and got her situated. I also find my husband amazing. In his hunting clothes he turned from outdoors-man extraordinaire to puppy delivery coach extraordinaire. My own Grizzly Adams, wow how I had a crush on him as a child!

Adelaide, who LOVES to talk. Sat patiently in almost virtual quiet and watched. Asking questions about the whole process, which at only three years of age, she has witnessed many times already.

Welcome to the world beautiful puppies!

Starting Today

I have been thinking a long time about writing down my thoughts, in a journal, a blog, on a napkin. Somewhere where I can try to get things worked out, share my strengths, my fears, my desires, my struggles. So here I go. I have decided to start this blog. Titled "Blood of my Heart".

I have recently been very drawn to the writings of Louise Erdrich, a wonderful author, who lives here in Minnesota. I have read three of her books in the past couple weeks, "Love Medicine", "Tracks", and most recently "Four Souls". In the last book that I read, there is a part where the child is referred to as the "blood of my heart", the Mother's heart, that is. I found this incredibly moving and a fitting name for my blog. For those of you who read in the days ahead, maybe you will understand why.

I welcome you all into a small glimpse of my life. You may find it interesting, you may not. Either way I pray that it helps me work out what I need to in my life and can help lead me toward my authentic self.

To all I send blessings of health and the wish for a peaceful soul.