For The Love of 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

“My spirit has returned and that makes me happy!”
“It was a year ago on Tues that I was first diagnosed with Breast Cancer. “
“…2009 just plain sucked.”
“I want to enjoy this year by laughing a lot and doing fun things…come out and play with me and my fantastic family.”

Happy New Year everyone,

I wanted to let everyone know that I have the results of my 3 months tests and scans. Without boring you with details what it boils down to is, the results are mixed. The tumors have not grown in size, good news. But all of the hormone markers are elevated. Some are down from the original tests in May but they are still all above normal. Dr. Burzynski has requested that I come back to Houston and they will add two medications to the Peptides I am already taking. One of the meds is an anti rejection drug used in transplant patients. An immunosuppressant drug. The other is a med used in liver and renal cancer patients. I find those and interesting combination of drugs and I promise not to bore you with the details. I won't know until next week whether the drugs will be administered orally or IV. Regardless we will head back down to TX and we suspect we will be there about 4 days again. We won't know that for sure until I start the drugs and they watch for side effects. I am hoping for about 4 days. It may just be wishful thinking but 4 sounds good don't you think?

The last three months haven't been particularly easy from a side effect stand point but a few weeks ago the depression started to lift for some unknown reason and my thinking seems more clear. I am grateful for the change as it makes life much easier. My spirit has returned and that makes me happy!

It was a year ago on Tues. that I was first diagnosed with Breast Cancer. I won't regurgitate the happenings of the year because in this house 2009 just plain sucked. The entire flipping year. Enough said! I do have several things on the wish list for this year with the first being a boob job. Burzynski doesn't want me having it during treatment (understandable) so I have to wait until I am done in Houston. It's high on the list!!!! I also want to have loads and loads and loads of fun. I want to enjoy this year by laughing a lot and doing fun things. I am hoping you can all come out and play with me and my fantastic family. It just HAS to be fun.

The Ibach's hope to see all of you this year. It was hard to stay in touch and the side effects make emailing hard for me. I am hoping the website can be updated regularly so that you are all kept informed.

My love,
Mary

“ALL OF THOSE SPOTS ARE GONE. GONE! “

I have been on the peptide treatments for a month now and am tolerating them fairly well. Some of the early symptoms I had are subsiding and others building. The dizziness is mostly gone so I am able to drive, at least during day light hours. The mental confusion seems to be worse at the end of the day when the level of meds in my system are at their highest. My body is experiencing the muscle soreness that is expected. Before I started on the meds I had 7 pre-cancerous spots on my face and hands that I kept saying to Jeff "I have to go have those burned off". I didn't do it for several reasons. Much to my delight, within three weeks of starting on the meds and using Dr. Burzynski's moisturizing cream ALL OF THOSE SPOTS ARE GONE. GONE! No where to be found. He has also had great success with skin cancers. YEA.... It also of course means I don't have to see yet another doc. for which I am grateful.

Emailing is difficult for me at this point and takes me a very long time so I am not likely to be doing it as often as I was. I will do my best to keep people informed or ask someone else to update everyone.

Sending my love. Take your D.
Mary

“I have mercury & arsenic poisoning.”
“I…started treatment at The Burzynski Clinic on the 22nd.”
“I am taking antineoplastons = sodiumphenylbuterate (PB) and amino acids (A2-10). I take 6 PB's and 2 A2-10's 6 times a day every 2 hrs until the regimen of 6 is complete. “
“I cried when I dropped Lillian off at the airport.”
“Catherine has been a silent, watchful angel in a way that no one else could be.”

Hello Everyone,

Well, I meant to write an update before I left for Houston to start treatment and that didn't happen so I am going to catch you up from Houston. Steaming, taking all my supplements and going to my appts has been a full time job.

To the update, which some of you know about. I have mercury & arsenic poisoning. Yes.... Bastyr was having me steaming for detox and when they found the heavy metals added a boat load of supplements a day to try to eliminate as much as possible. One capsule I take 18 of a day. Gulp. I am taking 10 different supplements a day and several of them 3x's a day. I understand each of their purposes so I see them all as worthwhile. But it is a boat load. Then there was more bad news from the MRI of my brain. I have over 20 small holes in the white matter in my brain. Matt (Oncologist) says it isn't cancer. The spots on my liver weren't cancer to begin with either if you recall. He said it could be hypertension (don't have it), diabetes (don't have it), MS or Lupus. They will watch it. He did say high levels of mercury or arsenic could cause those holes. Obviously, it is important to do what I can to get rid of the mercury & arsenic.

I came to Houston on Sept 21st and started treatment at The Burzynski Clinic on the 22nd. I was told to be prepared to stay for 3 weeks. Several people were trading places to come and be with me so I wouldn't be alone. I was told today, after only a week on the meds that I can come home. HOORAH. I have handled the medicine well and all my tumor markers came back negative (which doesn't really mean much with carcinoid cancer) so they are discharging me. I am taking antineoplastons = sodiumphenylbuterate (PB) and amino acids (A2-10). I take 6 PB's and 2 A2-10's 6 times a day every 2 hrs until the regimen of 6 is complete. I don't even want to count how many pills I am taking a day but it is a ton and I am going to take every last one of them until they tell me to stop!

The fact that I get to come home 2 weeks early makes me VERY happy. I even started to work out again while here which has been a taste of heaven. Have managed 4 work outs and plan a 5th tomorrow. I am coming home on Weds. Lillian came down with me and I would say really went to great lengths to get on the same flight as me. She is a doc so I felt very taken care of those first few days here. She asked good questions to the docs at Burzynski and it made me feel protected to have her along. She also was the oomph I needed to start working out again. Lillian and Joe, Jeff and I are forever grateful. I cried when I dropped Lillian off at the airport. I hated to see her go.

Catherine came in the next day and has been with me since. She had a wonderful idea on Friday and said let's drive to New Orleans tomorrow. So we did. It was a great distraction and quite interesting. The city is still in its recovery stage and the damage clearly evident. Catherine's daughter was at Burzynski 12 years ago and it has been helpful to have her tell me Tami had that happen to. She recognizes the side effects and that is nice. Catherine has been a silent, watchful angel in a way that no one else could be. You all have seen Catherine's name by many times by now as she has been the one rallying the troops for the fundraising. Jeff and I couldn't even begin to find a way to say thank you Catherine if we tried. But we are going to try with our undying love! I get to fly home with Catherine on Weds (thanks to Sonja, HS).

I get to go home and see my boys!!!! Cole told his Aunt Stephanie while I was away that his mom was a very smart woman. Then waving a finger with a twinkle in his eye said "but I am smarter" as he proceeds to tell them about the times he has twicked (tricked) me. Unfortunately, some of those times really did happen. He is his father’s son! And I hope he is smarter than me.

If you haven't been able to tell I am excited to be coming home. The side effects have been minimal by comparison. I have had some dizziness and confusion. I am not going to complain about those small things. Well maybe to Jeff I will. Sorry babe.

I will have scans redone in 3 months and we will know from the results what to do next. Fight ON. Your love and support has been phenomenal and we hope to return it someday. For different reasons!

My love, my blessings,

Hi Mary,

Uncle Jerry forwarded me your email update so I could get on your mailing list - hope that is okay :)

After reading this a few times......

MD Anderson = Bastards
Radiation & Chemo = Rat Bastards
Nazir = Angel
Matt = Wonderful, Not a Rat Bastard Oncologist like others who shall remain un named here
Cole = Cutie Patootie
Jeff = Younger Husbands ROCK! hee hee
Switzerland = It's boring all that neutrality - take a side for Christ Sake! The cheese will make you constipated and lactose intolerant. Swiss Cheesey Bastards. (Sorry Margaret!)
India = Place of Healing as USA and FDA has stick up their Rat Bastard Asses
You = The Will & The Power (also the Green Lantern according to little Anton)
Cancer = Biggest Rat Bastard of All
Love = from me to you and Anton and Little Anton and Oly and Josh and Laurel cuz I asked her and she said she sends it and she agrees with the Rat Bastardness.
Love Love Love
(((Hugs)))

Hope

“…I am going to Bastyr….”
“…we have to think outside the box.”
“I will keep investigating India.”
“Switzerland is not out of the picture but on the back burner. “
“…Matt said we have time to try one thing at a time.”

Hello Everyone,

We'll we went to see Matt Lonergan, oncologist, yesterday and have a tentative plan. Next week I am going to Bastyr to be detoxed. I don't know how long that will take but I imagine at least 2 weeks. Since traditional western medicine has nothing to offer me/us we have to think outside the box. We are going to try Dr. Burzynski in Houston. I say that with a caveat. I have recently gotten information on cancer treatment in India (thank you Nazir, I love you) and we are exploring what they have to offer. Yesterday Matt spoke very highly of Indian medicine and their ability to do what others won't. For now, we will plan on going back to Houston for peptide treatment with Burzynski, probably in Sept. That treatment protocol could last anywhere from 6 months to a yr. I will keep investigating India.

Switzerland is not out of the picture but on the back burner. They use radioisotopes that cause damage to kidneys and lungs. I would rather not put radioactive substances in my body if at all possible. If nothing else works I will do that but as Matt said we have time to try one thing at a time. For that I am VERY grateful.

Because we are thinking outside of the box insurance won't cover out of country or Burzynski. Is anyone surprised? Many friends have offered to do some fund raising events for us. You might imagine how tough that is for this Red-headed Irish woman! But I recognized we can't do this without help. I have to be around to watch my son grow into a man more than I need my ego or my pride. With that said you will all be hearing from friends, most likely through email, letting you know about these events. Forgive me, but I am passing along your email address so they can contact you. In the subject line they will use my name so if it goes into junk you will recognize it.

I am very glad to be home. Didn't like MD Anderson at all. The best thing that came out of it was we met a family from Dubai that was delightful. The dad studied at Seattle U years ago. They may come to Seattle before returning home. It would be fantastic to see them again.

My spirits are good and it is partially due to all of you for your encouragement to fight on. I am feeling pretty good physically to. I get tired easily or more easily than before all the surgeries but I make it through most days without napping. Jeff has also felt very encouraged by all of your support. He is also a fighter he just does it more quietly than me, or more graciously. Cole handled MD Anderson very well because Aunt Bobbie was there to play with him (thanks Bobbie) and he got to swim every day sometimes twice a day. When we landed back in Seattle while still on the plane he started singing "I wish I were back in Texas". He is a good little traveler.

We are leaving town this weekend for a family reunion with the Ibach's in Yakima. Going toward the sun.

My love to you all,
Mary

“She is not eligible for any clinical trials at MD Anderson.”
“…considering peptide treatments from the Burzynski Institute in Houston.”
“…peptides help heal the cells at a cellular level…
“…replacing peptides…promotes healing and at the same time reenergizes the body’s own system.”

Mary's testing and appointments at MD Anderson were completed as of last night. What we have learned this week….

1. Additional carcinoid tumors on Mary's liver were discovered, more than 5. One out of the two original carcinoid tumors on the liver has increased in size by .5 mm since May of this year. Dr. Yao considers the disease to be stabilized, meaning it hasn't grown more than 20%.

2. Dr. Yao classified Mary's carcinoid cancer as being stage 4 and has recommended Octreotide / Somatostatin radiation treatments starting next week. He did not recommend any further surgeries. She is not eligible for any clinical trials at MD Anderson.

3. Mary is considering peptide treatments from the Burzynski Institute in Houston. Unlike radiation which masks both good and bad cells, peptides help heal the cells at a cellular level by a process called mylanation. When the body is sick peptides become depleted, by replacing peptides into the system it promotes healing and at the same time reenergizes the body’s own system. Peptides are part of an approved regimen of what is being used to treat Carcinoid patients in other parts of the world. They are being used in clinical trials in this country.

It is also possible that one of or both of the treatment options above will be utilized. We are looking forward to being home Monday where and when we will continue to live, love and enjoy family and friends every day, every month, and every year. Thank you to you all again for your kind words of encouragement, your thoughts and your prayers during what is a challenging time.

We have an appt with Dr. Lonergan (Matt) on Thurs next week. We will go over the treatment options, including Switzerland with him and then decide what to proceed with first. Our strong leanings are to start at The Burzynski Institute.

From all of us...