For The Love of Mary

I made it, 38 hrs later I am here. I have been here for 24 hrs and have a few first impressions. The sun never stops shinning here. It was 98 degrees when I arrived here yesterday. Coming from the rain it is a welcome change. One of the first things I noticed is 99.5% of the women have long hair and few of them go gray even in later years. Then on the plane from Mumbai to Hyderabad NO one spoke until the plane was about to land. I have never been on a plane that quiet and it was full. The ride into the clinic was a delight of sight, sound and smells. There really are cows walking down the center of busy paved streets and people herding sheep across their major highways. Everyone stops and lets them pass. They honk at one another constantly but don't at the animals. Maybe they know it won't work. They have many wondering dogs, much like Mexico, that no one is caring for.

There are 9 of us at the clinic now. It holds 26. It is their slow season due to the heat. On Sunday there will be 3 of us left. A week from Sun there will be 2 of us. If no one comes after that I will be there only patient. I should get some GOOOD looking after don't you think. Since there are so few of us here the Raju Family is cooking for us instead of the regular cooks. To my benefit I understand, as the food is usually bland. It is quite good, thank goodness. You know how I like good food.

I met the Dr. this am. Nothing in my realm of experience with doctors was like this. He asked me what the doctors told me. Read my large medical file, took my pulse and said they will give a packet of herbs but "you take nothing without checking with me first. Take Smithi (an herb) 6 times a day, drink hot water for your cough and most importantly you must be brave." That got me to smile and I said to him "I am nothing if not brave. That one I have covered." He smiled for the first time and said "good, good, most important part." He than said they will come and get you for your first treatment and that was that.

I did have my first round of treatments today and it was a series of the most wonderful messages, oils, buttermilk, head rubs, poundings, water pourings and hot oils. That goes on 7 days a week. My smirthi was just delivered. The herb the doc has recommended I take 6 times a day. It has honey in it so it can't taste that bad. We will see at 3:30 this morning, or 3:00 pm your time.

I have talked to Jeff and Cole on Skype and FaceTime and they seem so close. Before I left town we had a slew of visitors and on Monday Cole asked me if he could talk to me in his room. He proceeded to ask me if I could have them all go home and just have family time. I told him we were going to have all day on Tues together and he didn't have to go to school. He seemed ok with that. He went to TaeKwonDo, earning his second stripe on his yellow belt, came home and Deborah Juarez was visiting. She had been there shortly before he left for TaeKwonDo. He went to his room got his semi-automatic nerf gun, came into the hallway and shot Deborah directly in the head! I guess he wasn't satisfied with we will have family time tomorrow. She turned her head away as to not laugh and handled it with the grace that only Deborah could. It helps that she has raised 4 children of her own and adores kids. Kids will always let you know what is going on if given an opportunity. My little Assasin. Naturally he claims he wasn't aiming at her....

Angie is coming on June 17th and Jeff on July 11th. They will be welcome sights.

My love to all,
Mary

Happy Spring! Yes, but where is it? There are a few rays of sunshine out today and it would be nice if it would stick around a while. (said by a woman that LOVES the rain)

Well I finally submitted to the scans to see what, if anything, was happening to the tumors. I also had the tumor markers taken and the results are mixed. While two of my tumor markers were normal one of them was elevated. The most "accurate" marker was once again normal which it has been four of the last five tests. I do attribute that to Protocel the supplement I am currently using. The serotonin was four times what it should be. The scans show some growth in two of the tumors, one in my liver and one in my stomach. The growth is 3mm, very small. There is also a new tumor in my neck that appears to be in lymph which isn't terribly surprising since we have known it is in my lymph system. Matt, the oncologist, says the Protocel isn't working. I am just not ready to say that yet, with the most sensitive marker being normal four times in the last eight months, so I continue taking the Protocel. I am having another MRI this week or next to have a better look at the tumor in my neck and to check the white spots they found in my brain over a year ago. The white spots are not "supposedly" related to the cancer.

While I am not willing to concede that the Protocel isn't working the news has spurred me to make our arrangements to go to India where we will locate (somehow) the nueroendrocine peptides that I can't get in this country. We have also made the decision for me to stay in an Ayurvedic Hospital for treatment. The nueroendrocine peptides and ayurveda are completely separate treatments. Ayurveda is the oldest medicine in the world and it is ALL natural. We have chosen the facility that I will be at and it is in Hyderabad, India. They have asked me to stay for 50 days to start with and I will do that. We have also found a western medicine doctor there that is trying to help us locate the peptides. I have sent the formula we are looking for and are waiting to hear back from them. Beyond that we don't have anything else in place. We are applying for visa's and trying to work out all the details of how to make this all happen. I do know that Jeff will be with me for part of my stay and Angie is going to join me for part of it also. The Ayurvedic facility lets someone come and stay with you for peanuts a day. I am very grateful for that. There are MANY MANY pieces to this complicated puzzle, that have been overwhelming at times, but I am certain it will happen. My hope is that we will make it there by the end of May. There may not be any reality to that time frame but I am shooting for it anyway. "God Willing and The Creek don't Rise".

I continue to steam, take Vit D and go to nuerofeedback (biofeedback of the brain). My Vit D plummeted from 80 to 61 last testing. I thought I was having a reaction to it, stopped it for only a week, then lowered my dose to 8,000 IU/day. What I had was Impetigo not a reaction to D. In that short period of time my D dropped markedly. The moral of the story is don't stop taking your D even for a week. I was surprised!

I have been meaning to tell you about the nuerofeedback I have been doing for over a year and keep forgetting. I have been seeing Bev Brashen for this specialty treatment. It is very much like biofeedback of the brain and helps to re-regulate the brains natural, healthy patterns. It has a fascinating history and great success with many disorders including epilepsy, depression, ADD/ADHD, anxiety, sleep and addictions just to name a few. It has helped me to regulate my life long sleep disturbance and bolstered my immune system. It also relaxes me deeply. I have loved doing it and am forever grateful to Bev for having suggested it. Naturally, it has been shunned from mainstream medicine because the pharmaceutical companies can't make any money on it and they can't control it. Do I sound bitter? I really am not. I have just learned more than anyone would want to know about how medicine works, or doesn't, in this country. That is NOT an indictment on the marvelous doctors that practice medicine to help people. We have encounter many such docs on our journey.

We all continue to be unemployed in our household but it has been quite a blessing, in disguise, of course. Jeff is still looking for work and I am glad he hasn't taken anything he hasn't felt really good about. Call me selfish, but I want him to go to India with me! I know he has been happy to spend so much time with Cole and me. Angie being willing and able to come to India and stay at the hospital with me, while observing the treatments, will be a wonderful addition to her education at Bastyr. Cole won't be going to India with us for many reasons. Maybe next time.

Saving the best for last... I want you to know I feel better than I have in two years. Most of my energy has returned and my mind finally seems to have been mostly restored. I can hold information for longer periods of time and my tracking has definitely improved. I am looking forward to trying to regain some of my physical strength and stamina. The plan is for things to keep looking up.

I will keep you posted as India unfolds and definitely from India.

Many blessings,
Mary

It is a Happy New Year in our house. We got the blood work back from the latest screening and we are once again doing the happy dance. This time there is no roller coaster ride just dancing and thanking the good Lord. The most sensitive marker is Chromogranin A and is indicative of cancer growth. The normal range is 0-50. Last time my chromogranin was 100. This time it was 5. Yes 5! 5, 5, 5, 5, 5. Serotonin is also measured and normal is 0-220. Last time mine was over 1000. This time it was 46. Yep, you are reading right 46. Serotonin in massive doses like I had is what ultimately damages the heart, as it floods from the liver to the heart, and is also partly responsible for the flushing I experience. I didn't have scans done so we don't know if the cancer is receding or not. I will have those nasty scans next month (I keep saying that)! The other test that showed improvement was my Vit D. It went from 71 to 80. The Vit D council recommends that people with chronic illness have a level from 80-100. Which reminds me. Have you all had your D checked? Ya, here I go again. Vitamin D is involved in over 2000 gene's. Which means it has a TON to do with your long term health and even more important, healing. PLEASE, get your D checked. It's easy and cheap.

Next week marks the two year anniversary of the bilateral mastectomy and the beginning of a long arduous journey. Jeff and I were talking about the first surgery and it feels more like ten years than two. I will have my sixth and hopefully final surgery a week from today. So much has happened in the last two years that it is just simply hard to take it all in and sift through it.

Over the holidays I started rereading the best of the cancer books I've collected and was reminded of the significant difference that friends and family make on a cancer patients survival. Cancer patients survive up to 60% longer when they have a good support system in place. Here's how I figure it... I have a much better than good support system. I have an UNBELIEVABLE support system so I'm thinking my survival must be up to 100% and we can just beat this damned disease. I know all of you have wanted to do something, anything to help and those studies prove YOU HAVE. It has made all the difference in the world and then some. Jeff and I feel grateful (understatement) and blessed.

Jeff is still looking for work. We have had a wonderful few months hanging out together. He has gotten serious about his job search and things have started to look more promising. I think he is ready to go back to work. It has been really great for me and I will miss not having him here all the time.

Cole's newest adventure is Tae Kwon Do. White Gee and all. So if he "hi ah's" you, I apologize! It is delightful to watch and his master is wonderful with the kids. There are little 9 yr old black belts. Holy Cow! Cole's school teacher told us last week that she is sure Cole now understands everything she is saying in Spanish (he is in Spanish Immersion school) as he is translating it all to English, out loud of course, and she has to stop him. He is reading in Spanish as well. We are really pleased that he will be bilingual in a short time.

Aunt G (Angie) is still living with us and continues with her studies at Bastyr. She remains a ray of sunshine in my life as those of you that know her can easily see. Jeff teases her, as only brothers can do, that Cole will be leaving home before her!

I wish you all a loving, joyous and healthy year.

My love,
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