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Welcome to my CaringBridge website. I've created it to keep friends and family updated on my current condition. Get started by reading the introduction to my website, "My Story."
Visit often to read the latest journal entries, visit my photo gallery, and write me a note in my guestbook.
Always remember each breath we take is a gift! There has been A LOT of good that has happened to me because of my illness. I encourage all of you to live in the moment and to be constructive in your life...the past is gone and the future is not here yet so what we have is the present, and it is good!
My life changed drastically when I had a ruptured appendix on Feb. 10th, 2009. Three months later, my kidneys started to malfunction and I was diagnosed with a rare disease called Membranous Glomerulonephritis; which is major loss of protein in my body. I endured a 6 month period of steroids and chemotherapy called immuneosuppressant treatment where we did not get the expected results.
I gave CT scans every 3 months and the first 4 showed no change. The 5th one on Feb. 10, 2010- exactly one year after my appendix ruptured- showed that my unusual spleen was filled with cysts and growing in size. I have been diagnosed with a very rare cancer called Pseudomyxoma Peritonei. Microorganisms from the tumor that were inside my appendix is now growing new tumors on the outside of my internal organs and also creating a mucin (jell). If left untreated, this jell becomes sticky and then hardens like cement, cutting off blood flow to my organs until death occurs. I am hopeful that based off of the pathology report of the tumor inside of my appendix, I have what is called "low grade" where my prognosis is good and hopefully will not metastasize throughout my body.
In Baltimore, on June 15th, I will be having a major surgery called MOAS...short for Mother Of All Surgeries. My oncology specialist is one of the best doctors in the world! Doctor Sardi and his team will have my life in their hands as they perform what could be a 12 hour operation. Dr. Sardi and his team must remove all visible tumors from my body cavity and remove all mucin or jell from my internal organs. My spleen and gall bladder will be taken out for sure. A urologist will be on hand to take a biopsy of my left kidney, which has two cysts on it. Based off of his findings, my left kidney may be removed, cut in half removing the two cysts, or be left alone and watched through future CT scans. After all organs have been scraped and cleaned of visible tumor and all mucin removed, my 15 inch incision will be closed. Then a hot chemo will be injected into my body cavity and I will be washed for 90 minutes to kill all of the microorganisms of the tumor.
I have been called an enigma (something that is puzzling...baffling) by my doctors! Many of you knew this long before I became ill as this decribes me my whole life!!! Two world reknown specialists Dr. Sardi and Dr. Sugarbaker have never seen Pseudomyxoma Peritonei along with Membranous Glomerulonephritis so I am at a higher risk to have renal failure either during or post surgery- so I need your prayers!
If you are interested in more details about this disease check out my friends blog...www.oncoloblogy.com..... as he has some wonderful information and how life is after MOAS. I believe there was divine intervention in how we met! Two total strangers in a small town with the same rare disease! You can read about it somewhere in my blog along with a more detailed account of my journey so far: www.bigfishdiaries1.blogspot.com.
Thank you so much for caring and looking in on me as we endure this experience together. I know that I have a great support team and lots of love from family, friends, and caring strangers. Not everything over the last year and a half has been bad as I have learned a lot about myself and have met many amazing new friends. I will be at MD Mercy hospital in Baltimore from 14 to 21 days after my operation, and once released, I must stay in Baltimore one week before I can return home to Wisconsin.
I have made the choice not to live the rest of my life in fear, but rather in love! My biggest fear if I die is that my wife will sell all of my hunting and fishing gear for what I TOLD her I paid for it!! Thank you soooo much for your thoughts and prayers, I remember a passage from the book "Have a Litte Faith" by Mitch Albom..."Nothing haunts us like the things we didn't say..." So I'm saying to you all right now...