For The Love of Mary

If you read yesterday's blog and are now reading this one you have effectively gotten on the roller coaster with us and it is headed down. I used to really like roller coasters.

The Chromogranin A came back today and it was elevated to 100. It was 35 and normal. It is no longer normal and almost three times what it was.

We have no idea what, if anything, is affecting the numbers. It is certainly the big question I wish we had an answer for. I will stay the course for at least nine more months and keep looking and researching.

Needless to say we are disappointed. The nice thing about feelings is they change and sometimes VERY quickly. Tonight is better than earlier today and tomorrow will be even better. I am glad to be of the 'fighting Irish descent'.

I do appreciate hearing from so many of you and especially liked how many of you did the 'happy dance'. Your texts and emails have made me smile through the day. Just wish I had pictures of you all doing it!

We got a(singular) taker for the free child. It happens to be my first cousin & his wife. Bless you both. I suppose it's only right for the reign of terror to stay in the family. Please notice the Aunt & Uncle who bought the semiautomatic weapon did NOT offer to take the free child.

Thanks for your love and prayers. Keep them coming.

Many blessings,
Mary

It would probably be in my best interest if I were cautiously optimistic. Cautious isn't really my nature however so I am just flat excited. I had blood work done last week and got two of the results yesterday. My seratonin & histamine have BOTH come down almost 400 points. I know that doesn't mean much to most of you but trust me it is good news. They have never been headed down together at the same time and they have never dropped 400 points. The histamine has less than 200 points to drop to be in the normal range. The seratonin has to drop more than 500 to be within normal range.

I also found out yesterday that my cromogranin A, the most accurate marker for tumor growth, was within normal range last time. I somehow misunderstood the doc last time and thought it was still high. IT WASN"T. No wonder he was so dang curious about what I am doing to beat this damned disease. I haven't gotten the results back from the cromogranin A yet. They should be in later in the week. I will post the results.

My treatment regimen consists of Protocel, steaming and Nuerofeedback. I take Protocel four times a day. It is being "called" a dietary supplement but was developed to cure cancer. I am steaming two hours a day and going for Nuerofeedback twice a week. Nuerofeedback is much like biofeedback except it is on the brain. The idea is to reset the brain waves to their "factory settings" where the body functions at optimal levels. I believe these three things are what have brought my levels done.

We are doing the "Happy Dance" at our house. Want to come do it with us? You could. Really! The fund raising committee is having one more event this year and it is The Safari Party. Named such because an African Photo Safari is being given away as a door prize. NO KIDDING. If you haven't gotten any info and would like some let me know by posting a comment here, on my facebook account or via email and I will make sure you get it. We will be doing the "Happy Dance" there to!

On the home front Cole turned six last week and we celebrated by having 17 kids, for a party, at the house. Yes we have lost our minds! He had a blast. Well, until the next day that is. He stayed up to late with his cousins and Aunts and was in RARE form by Sunday evening. About 5 pm we sent his friends home because he was in a foul mood and crabbing at them. At 6 pm we sent him to his room because he shoved his dinner plate away saying "I'm not eating that". We then put a sign in the front yard that said child for sale. When he stormed out of his room a few minutes later and announced demandingly he was hungry we crossed out for sale and put FREE!

Cole's Aunt Bobbie and Uncle Pat somehow saw it necessary to buy Cole a Nerf gun that easily could pass for an automatic weapon. It holds six D batteries and came with five ammunition clips just to give you some idea of the power it packs. You have to go in another room to talk on the phone when it is blasting away because you can't hear. I told my Aunt Bonnie about the gift and she said "Well that was nice of them. You can thank them by buying them a puppy. Get them a terrier." Don't you think that is a fabulous idea? Aunt Bonnie is all Blackburn and I LOVE HER.

Jeff is still out of work and we are both enjoying him being around all the time. Reality will happen soon enough. He is looking for work in his spare time. ;)

The Ibach house sends their best to you all for a peaceful holiday season. Yep it's coming!

My love,
Mary

I am certain I will spend the rest of my days wondering if I have sufficiently been able to thank people for their love, kindness, generosity and support the last 20 months. There isn't a way to effectively put to words all that it has meant to me and my family. I suppose it's not a bad thing wonder about. Our lives would be very different without having received these gifts.

We got some VERY GOOD news on Monday this week. I had my 3 month blood levels taken. The most sensitive marker for cancer activity is called Chromogranin A. The last test taken it was at 60 which is very high. This time it was at 35. Still very high but moving in the right direction. Even my Oncologist was very interested in what the new protocol I am using is doing. When this all started my chromogranin A was at 120. Off the charts. It keeps coming down. In May I stopped using the peptides and in June started using a product called Protocel. It has a fascinating history behind it much like Burzynski's peptides. There are 4 great chapters on Protocel, formally called Cancel, in a book named How to Outsmart Your Cancer by Tanya Pierce. We are keeping our fingers crossed and saying our prayers.

On Sept 11th we are hosting a Gold Rush B-Bque at our house starting at noon. Kids are welcome and they will have games such as panning for gold. We are collecting that old gold laying around in your jewelry box, not being worn and having it melted down. Proceeds will go into the medical fund. Please join us with or without gold.

A follow up on my last post about Freedom. Her handler Jeff Guidry has published a book that is now on the shelves called An Eagle Named Freedom. It is a beautiful story with a happy ending. I understand Costco is carrying it. I was so pleased to hear it. I hope it is hugely successful.

We had a bit of a bump in the road last week. Jeff lost his job. He was working in the building supply industry for the last 4 years and we all know how well that market has faired. We of course are hoping it means a better opportunity is out there waiting to appear. For now we are going to enjoy spending more time together.

Cole starts school (kindergarden) on Monday and we are all excited about that. He got into the Spanish Immersion school which teachs only in Spanish. We are thrilled. We met his teacher on Weds night and got to see him sitting at his little desk with all the other 5 year olds. Adorable.

I hope everyone has enjoyed their summer. Ours has been very busy and I am looking forward to fall. My favorite time of year.

My Love,
Mary

Hello Everyone,

How has it become June already?

We have the latest test results and it seems that much has been happening. I look back and wonder how I ever managed to work for a living. Of course the circumstances were different then but the days just seem to melt away before me.

My mom passed away in April after many years of physical and mental suffering. She contracted pneumonia and made her own choice to stop the antibiotics when they discovered they weren't working. She passed peacefully with no anguish. I think it was as graceful as it could be. My family all had the opportunity to spend time with her and to say goodbye. Death is never pretty but my immediate and my extended family loved on her until the moment she left us. I am proud of how well mom was taken care of by all of us. My nephews and nieces were exceptional.

We got the results from all the testing on May 10th. The Carcinoid cancer remained unaffected by the peptides so after 7 1/2 months we stopped the regimen. Mostly I want you to know that I am not disappointed. Given what Jeff and I know about Carcinoid we were fully aware going in we may have to try 8 or 10 alternative methods before we find a cure so this was simply the first. We do know it removed all of the precancerous spots from my face and hands and are betting on it having destroyed any lingering breast cancer cells that may have been there. We got to meet Dr. Stanislaw Burzynski on two occasions and will always hold him in high regard. He has dedicated his life to saving lives and has risked everything to continue doing his job because he cares about his patients more than he cares about his reputation. A man of honor in my opinion.

What next?

The next order of business is to get rid of the toxic levels of mercury, arsenic and lead I have in my system. I will go back to steaming everyday building up to two hours a day and taking chelation supplements to help eliminate them more quickly. I am hoping I can be rid of them within a couple of months. I go back to Bastyr next week to have my levels checked and will do so every three to four weeks until they are gone.

Then I will start on a protocol by the name of Protocel. It is listed as a "supplement" but was developed by a biochemist, Jim Sheridan, from this country many years ago. He, like Burzynski, ran into all kinds of obstacles from the FDA, Government and United States Postal Service. Jim Sheridan has as rich and interesting of a story as Burzynski. There are two very good things about the Protocel. One, it is inexpensive and two, there are NO side effects. If I never see side effects again it will be to soon.

As I am using the Protocel we will make our contacts with the people in India to try and have the nueroendrocine peptides manufactured there. It is likely we will make at least one trip to India. Nueroendrocine peptides would be number three on the list of attempts to ditch the cancer.

As you can see I/we continue to plan and be proactive. There isn't grass growing under our feet.

We as a family are doing well I think. Cole will start school in the fall and was lucky to be lotteried into the Spanish Emersion Program with Bellevue public schools. We couldn't be more thrilled. It is hard for Jeff and I to believe he is starting school this fall. Angie is thankfully still living with us and attending Bastyr.

Jeff and I hope each and everyone of you are finding joy and loving well.

My love,
Mary

Hi Everyone,

I realize it has been a while since I have been in touch and for the most part no news is good news. There hasn't been anything medical to report. I will have scans done & tests taken at the end of April and once again what we do next will depend on the results. The best I can say is stayed tuned.

Well, I said I wanted to have fun this year but what took place on March 21st was beyond my wildest imagination. I keep thinking if I let it digest I will better be able to describe how I felt about my experience. Nothing brilliant has occurred to me so I am just going to have to do my best.

Meet Freedom and Jeff Guidry. Theirs is a remarkable story of healing. I won't tell you anymore but to google Jeff Guidry and Freedom and read a small part of their story. Jeff has a new book being released in May by Harper Collins called "An Eagle named Freedom".

I obviously had the distinct pleasure of meeting Jeff and Freedom. It was a day I will never forget. Being in the presence of this magnificent creature and her loving handler was a deeply moving experience. Jeff went and got her and brought her to us standing 10 -15 feet away. He told us she was "a little squirrelly today" being spring and all. She was squawking and flapping her wings. Jeff said to me "come on over here Mary". "You need to come into her space." I walked over and stood beside them. Oh my gosh I am standing INCHES from a Bald Eagle. She was immediately still and leaned into Jeff a bit all the while giving me a good look over. I was giving her a good look over to because she was so incredibly beautiful that I was awestruck. I have no idea how long we stood there. I could have stayed forever. My Jeff was there taking lots of picture along with the wonderful people (Drew & Brenda) responsible for us meeting Jeff and Freedom. Everyone was visiting but I have no recall of what was said.
Then much to my surprise Jeff Guidry handed me a glove and said put this on. No, No way. I am going to get to hold this stunning animal? It NEVER crossed my mind that that would be a possibility. Jeff said she wouldn't always do it but we could try. Freedom got on my arm. She got on my arm and immediately put her right wing around me! She left her wing around me the entire time I was holding her. Iwas holding a Bald Eagle who had come back from deaths door. I really can not begin to describe how it felt. The air around me, her, was perfectly still and remarkably peaceful. There was this fabulous peace. I have never before felt this way. All I could do was look at her. She has brilliant yellow circles around the outer part of her eyes that were the same color as her beak. The feathers between her beak and eyes look soft and wispy. Her head was as white as white can be. Though she can't fly she feels strong and confident. She ruffled her head feathers for me and puffed up her chest. I told her how beautiful she was. She seems to know!
As she stood on my arm she started turning toward me to the point I was backing away because I didn't want to startle her by talking to loud or laughing. Freedom continued to pursue me. A few of the pictures show her stretching her neck to come closer to my face. Jeff said "she likes you. She won't let just anyone hold her." I asked if I could touch her. Jeff said "put your nose on her beak". Every neuron in my body fired at the same time. I could hardly believe what he just said. I put my nose on Freedom's beak and I cried. I am holding an Eagle and touching her beak with my nose. She let me touch her. I am blessed. She has blessed me. The humility that coursed through me was palpable. The air left my lungs and for a moment I couldn't make sense of what had just occurred. My mind returned and I felt deeply honored. Once again I felt like I could stay there forever. I thanked her for letting me hold her and for spending time with us and for behaving with such grace.

Reality set in at some point and she started getting heavy. I eventually gave her back to Jeff and pictures were taken with Brenda and my Jeff. Freedom was shortly there after returned to her home which is out at Sarvey Wildlife Center. We were also treated to getting to watch her bathe. Jeff said she doesn't usually let people watch her bathe or eat. It seemed like we got lots of special treatment that day. It was unequivocally and utterly a highlight in my life.

This wasn't what I meant when I said I wanted to have fun but I will take it and keep it very close to my heart. Before I go to sleep at night I picture Freedom sitting on my arm with her wing around me and I am at peace.

To Jeff and Freedom I offer my deepest heartfelt gratitude.

To Brenda and Drew our new friends, you went way out of your way, for pretty much complete strangers, to provide us with an experience of a lifetime just because you are those kinds of people. Wow how lucky can we get. You shared your time and yourselves with us. Thank you for your thoughtful kindness. The world has good people in it and the two of you are proof.

My love to you all,
Mary