Sunday, June 6, 2010

The Journey Begins

On May 21st I had what I thought would be some simple surgery and minor repair work. The symptoms experienced over the last 8 months pointed to another prolapse or digestive issues. The doctor was not concerned because a colonoscopy was done 2 and 1/2 years before and while a benign polyp was found then, not other issues arose. I was initially sent to a colo-rectal surgeon who diagnosed and concurred with my family physican - if diet did not change symptoms, I was to have some minor surgery. Needless to say a few months and more visits, checkups and even a small scope showed nothing more than the minor issues. Surgery was scheduled and because I mentioned something about pressure, the surgeon looked a bit further in the surgery and found a suspicious mass. He had it biopsied and it came back positive for squamous cell cancer. While I always wanted to look like Farrah Faucett, I did not want to end up with the same dreaded disease she had...I honestly only wanted her blond hair!

Fast forward to having my family physican hook me up with two new surgeons who would further diagnose (the initial surgeon was a general surgeon not a specialist but he knew enough to remove and biopsy what he saw and then stop) and perhaps give me a plan of treatment. For now the road moved from minor surgery and recovery to minor surgery, cancer diagnosis and more roads ahead.

The first doctor I was to see (I was shopping around) was at the University of Minnesota. My family doctor thought it was too far for me to drive but since my brother and my only sibling (who has multiple myeloma ) attends U Penn a teaching hospital for his cancer, I thought it was best to keep everything in one place with a team of doctors but I was not about to make any major decisions on this. After all, the group will have my life in their hands.

The hospital was daunting, large as the U of M campus is huge -- ironically when I did my undergrad I went to Augsburg which lay side to side with part of the campus...life has a way of going around in circles I believe and this is one major circle...plus I do not believe in coincidences...never have. I believe everything happens for a reason and while we do not understand at the time what that reason is, it becomes clearer and clearer if we open our hearts and minds to it. Nothing in my life has happened by coincidence. Not the friends I have made, not the move to Minnesota, not the jobs I have found, not the degrees I was able to attain, not the diagnosis that was given and not even the hospitals that were chosen for me to check out.

I find myself praying a lot...always did, all my life. While I do not sit and read the bible and pray nor do I go to church a lot, I do pray...sometimes it is just to say thanks for small things, like my sons coming home safe from school or a trip, my husband's health improving, to pray for a friend or family member who is ill or needs hope, to thank Him for the flowers that bloom every year in my garden (you would understand this one if you knew what a horrible gardener I am) and just for blessing me all my life. Now I find myself praying simply for guidance and help. Point me in the direction I need to go and I will follow.

When I walked into the U of M waiting room, the first person who greeted me was a sweet African American man with a crooked smile and dimple in his chin. He guided me carefully as to what I needed to fill out, what I had and to take a seat. He made me feel comfortable. Then the first nurse that came in (who I nicknamed McGuyver) - a young Asian girl with round face and exuded so much sensitivity found information I could not and added it to my chart (the colonoscopy info for example). Finally a young doctor came in (female) who had 7 years of surgeries already - she did not look more than 29 herself who asked questions and listened intently. When my actual surgeon and specialist walked in, he was my age, kind eyes and listening heart. He asked me some questions and then when I mentioned a few of my fears and some of the extra symptoms he sent Rich out so he could check me out. I got to watch what he was doing on the screen and he pointed out the healthy from unhealthy tissue. Then he showed me on the chart. The 'sample' the other surgeon removed (he thought he got 95% of it) was only the tip of the iceberg. My doctor Dr. D, felt there was more there and wanted to see every scan, record and slide there was before committing to a diagnosis. He thought it might be squamous cell but he felt something else was going on that was unusual. With every passing second being in there with him my confidence level rose. My anxiety level lowered. It 'felt' right to be there regardless of the end diagnosis. I did not ask God to give me a sign but He gave me a few anyway.

First, the doctor asked me about my accent and where I was from and I said originally from Jersey and he laughed and said well, I knew it. I went to school in Jersey and I thought he was going to tell me it was the University of Medicine and Dentistry in Newark but he went to Princeton! I felt like a proud Jewish mother at that point. Wow. Princeton. He has to be pretty smart...and then we talked about possible treatment depending on whether he concurred with the other pathologist (his team would be looking at my case first) but he said that more than likely I would be going through a few scans (CAT, PET, special MRI they only do there and blood tests) before treatment begins and the treatment would more than likely be a Radiation/Chemo mix.

Now I had done a lot of reading prior to this and one thing that kept coming up was the Dr. Nigro treatment/protocol that had become popular over the years to spare patients from colostomy bags and losing everthing else (but for me if I have my life I can deal with anything) -- this treatment used to be given to lab rats first before surgery was performed and it was found that the treatment alleviated the need for surgery because it got rid of the tumors and cancer totally. So I was curious about whether or not this was the treatment plan he would be looking at. Sure enough when he said rad/chemo mix per Dr. Nigro's protocol I jumped up and said I read about him, I'm so glad you are thinking of using his protocol. And he said, not only is he using his protocol but he KNEW the man, who just recently died (hopefully not from colon cancer I added and my doctor smiled and said no) but he also attended his seminars and worked with him for awhile. When I looked up at the ceiling at that point, God knew I was saying that small thank you again for watching over me. I left there feeling confident in my future care.

Now that is where I am at this point. I do not know the staging, I do not know if Dr. R will concur with the other doctors or pathologist, I do not know for sure what I have or if it has spread or what is going on. For now I am in limbo waiting for scheduled testing and possible diagnosis. I did purchase a Reiki healing tape and listen to it while I type these words in my blog. Whether anyone reads this or not is not important, what it important is I am able to express my fears, my hopes, my experiences. I think everyone going through this should have the opportunity to do so and if I can be here for someone else going through this, I will gladly be there.

So, I am signing off now until I hear further. Be well. Marilyne

10 comments:

  1. Thanks for the info Mar! :) Reiki is good and just know that the positive thoughts and prayers are coming your way :) Hugs, Anne

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  2. I love you, Mar - we are all here for you and pulling for you!!!

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  3. Well, I am totally surprised to hear this but appreciate your explanation. Sounds like you have already done a lot of research on this on your own, which I would have totally expected, so you will be well informed as you proceed with the treatment and probably teaching the doctor a thing or two. Our prayers will be with you.

    Fred

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  4. You are amazing without a doubt. I have thanked God every day for Dick finding you (or you finding him). You have blessed out family more than you realize. Love you. Valerie

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  5. ...I'm the one who has been blessed.

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  6. I'm here and always will be......We have been through a lot together and this will be just another bump in our lives. Ok maybe a big pot hole. I know what your feeling, which makes it easier for me to understand. Love You and will say a prayer everyday.

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  7. MAR,I so appreciated reading your blog. Informative and yet so you - so conversational, almost as if we were talking on the phone. I know this wouldn't be easy, but I also know you are astrong woman - you have an inner strength that will help you through it all. My thoughts and prayers are with you today and always. Jersey Girls through thick and thin...I'm here if you need to talk. Love, JES

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  8. You are an amazing person and as soon as you told me I knew you where going to confront this head on! I will be here for your journey and praying for success in your treatment and recovery. Tell Pete I also wish him much success in his treatment. Love & Hugs, Georgy

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  9. You are one amazing woman! My love and prayers come to you every second of every day.

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  10. I have seen you leap alot of mountains - I believe this is only a hurdle, you will again conquer. You are and will always have me 100% at your side.

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