A Variety of Updates

Banana Bunch Update: All of you out there go beyond everyday, with emails and kind words and well wishes. I feel it and i love and have much gratitude for you each day. My kind friends have offered so much hope and encouragement. I wanted to share that one of very close friends, Ana, shared with me her 1000 paper cranes. They are thought to bring healing and I have been told are very powerful. They are hanging on a sculpture my grandfather made, blessing the house. Thank you Ana for sharing, I hope they bring some good fortune into this journey.




Finally, my new friends from the Power Of Two, took a picture in their shirts and shared it with me last night. I felt it NEEDED to be seen. Despite the long hours they are spending creating a fantastic movie, they spent a few silly moments thinking about me, and sending me the vibes. Here is the Director/Producer, Marc, and Editors, Tom and Matt as the silliest banana bunchers!


Health update: Since my transplant evaluation I have gained 4 pounds. I know that scares some people, but for me, it is great. The more weight i can have, the healthier BMI that i am at, the better. I feel really good in my body right now, and as the dietician at CF clinic said, I am "rock solid". So that is great!!! In lung news I blew a 0.85L for my FEV1 which is 27% Just exactly the same as my last visit to the transplant clinic. Again, we are doing really well. Stable, keeping on track, doing all the things right. My only complaint right now is this little rash i have from constantly having the oxygen cannula (cannolies as i call them) rubbing on my upper lip. I have like Cannoli burn. But that is the worst of it right now. They were very impressed at how well i am doing, and it is just really hopeful, so i can wait it out till the absolute right lungs come along.
I asked if there have been more offers for me, and Dr. Dhillion said that my name is coming up, but things like size haven't been quite right, and the perfect match hasn't come up yet, but it will. He again said he would be surprised if it didn't happen by the end of the year. So that is only 2 months away!!! SOON SOON SOON. He also emphasized that none of us know anything in this game and we can't predict, but he did say that this from previous experience, so i am hopeful.

Spiritual update: As we were walking the halls at Stanford we ran into my mom's friend, Bruce, a Chaplain at Stanford. They worked together back in her Chaplain days :) Anyways, we ran into him, and he wanted to talk with us, so we asked if he would be willing to give me a Jewish blessing. He took us to a little corner in a private waiting room, where he gave me a fantastic blessing. It was calling in the archangels, and all the positive energy for protection during this time. It was great. He also acknowledged the cycle of life, and the gift of transplant. It was so great and reassuring. It was another great experience that came out of this magical transplant journey.

The Bunch Collage

I had asked for pictures to be sent when i sent out the shirts... and many have come in. My friend Linda also began collecting pictures to put together for a collage. She took on the project to help me out, but we ended up completing it together as two heads are better than one, and fun times with friends are better than doing things alone! Saturday Linda brought over a bunch of loving pictures of friends and family. I was so overwhelmed and humbled by all the love in the pics. We got a big old poster board, similar to the ones we used as kids for the science fair. We spent a couple hours of planning and designing and constructing. It was a nice day of fun and creativity. I needed that. What we came up with was an awesome collage full of love.



I want to encourage any one else who received a shirt to still send in a pic to my email
A13@aol.com OR even if you didn't get a shirt, send a pic of yourself holding a sign or just your cute face. I am planning to make a mac book with all the pics to have as a keepsake, and the more pics the better. I would love to include everyone... so don't be shy! Thanks so much for the support and love. I feel it every minute of every day!!!!!

Today is 92 days of waiting on the list... I am hanging in there... day by day by day.....

His Holiness, standing in for Grilled Cheesus...

Today was Sushi lunch day. We took a trip to our favorite sushi place, YAKKO, and had a nice lunch. Mom and I try to have as much fun as we possibly can. If that means stuffing our faces, so be it. Well, she didn't stuff her face, that was all me. But I am happy to announce that my blood sugars were just fine after eating all that, and i was relieved. After lunch we walked over to East West Bookstore, looked around a little and went home.







I did the temptation roll and a bento box, with agedashi tofu and sashimi. Mom had only 2 of the temptation and i ate the rest. I was still full when dinner came around so we simply had grilled cheese and homemade chicken soup.

Now look at what happened to my grilled Cheese... do you think it is a sign?

The Power of Two, and me?

On Saturday night we ventured as a family to the first viewing of "The Power of Two". It was a rough draft, but still very very good. I have posted previously that I did a couple interviews for the movie, but I had no idea that I would be so present in the film. I am still a little in shock that My face and the intimate details of my illness are all on display. I am doing it for the purpose of education and to share with the world, the hidden life of Cystic fibrosis. I expected to be more embarrassed about my exposure, but the fact that the team, the editors, and director portrayed me in such a realistic and honest light, it allows me to feel that i am not just a character, I am me. Granted, my personality gives me a lot of character, but they did not try to make me "the poor sick girl". Obviously I am sick, but I am still me. My mom was in it as well, she was there as my support. They could not include my whole family, as this story is not actually about me, it is about Ana and Isa's journey, and the differences of organ donation . I am just a fleeting character in their beautifully moving film.

The main purpose of this film is about organ donor awareness, and therefore really needs support to be completed. All the funding comes from donors. I wanted to put out a call to action to see if any of you my blog readers would help to donate and financially support this important film. It takes money to get the word out, and providing a tax deductible donation will help. Please visit The Power Of Two and click on Donate, to make a contribution. I thank you in advance. This movie needs to make it out there... it is going to help move this movement forward. The way to more donors is more education. Please, Please Help this very important cause!

The greatest gift I have ever received

Yesterday was a day to be savored and remembered for my entire life. It was a day where kindness and compassion led the way. It was a day that I believe was 'supposed to happen'. It felt like a destined journey. I was personally blessed by His Holiness, the Dalai Lama.
Honestly, I don't think there are words to describe the miraculous experience that it was for me. No matter what your religion or spiritual practice, there is no denying that the Dalai Lama is a powerful being. He eminated light and kindness and hope. Every fiber of my being was lit up from just simply watching him walk through the doors of the Ronald Mcdonald House. There was the hustle and bustle of the secret service, the papparazzi (that were supposed to be there) and his translator, his fellow lamas. He had an entourage, but it didn't take away from the amazing grace that this man exudes from his soul. He literally walked through the doors and it just felt like a burst of sunshine. EVERYONE's breath was taken away. We were in a room of children, and there was SILENCE, absolute silence. It was an awesome moment. totally awesome.
He is such a memorable and famous person, yet so familiar and safe. One of the kindest people I have ever met. Let me qualify this, he is ONE of them ONLY because i have had other personal experiences with lamas before this. Lamas, are the kindest people you could ever meet. Their touch is soft, and comforting, but firm with direction and intention. They have smiling faces, and kind eyes, but they are full of wisdom and depth. All the Tibetan Lamas in my experience have had this experience for me.

I can't quite quantify or explain this event that took place yesterday. The timing and the magnitude of the situation that unfolded just is so humbling and incomprehensible.

I have been gravely ill twice in my life, NOW, and when I was diagnosed with CF. When I was diagnosed with CF my mom took me to see Lama Gangha. We spent many days together while he gave me blessings and honored me with herbs and special "Lama Gangha numi-nums" as i called them. They were small balls of black incense/herbs that were blessed for me to ingest. I have had magical experiences. Lama Gangha was my friend. I forgot about Lama Gangha for a while when i was growing up and became a teen. The memories faded of our times together. But recently it is all flooding back to me. The taste, the smells, the touch, the feelings, the healings. I need it.

The experience of needing a transplant forces you to dig deep inside yourself, into a place where maybe you never thought you needed to go. Mentally it is taxing. It forces you to find peace and comfort. Many turn to their different faiths. I have heard many stories of those who have found god, because of this. My understanding of this experience is that there is a karmic connection to these lamas. I can't explain the fortune that has been bestowed upon me at this time, this time in my life, in my greatest time of need, that the Dalai Lama would appear and I would be welcomed beyond all odds to share in this auspicious experience.

When i learned that he was coming, (back when i was at my sickest in this journey towards transplant) I just knew I needed to see him. But how could that be? Why should I be so lucky? Who am I to get this experience? I am not a practicing buddhist, those are the people, the people who know of his greatness and follow him, those are the people who should see him. Not me, how could i be worthy of this? But the little voice inside my head told me that I would be there. Now, it isn't a complete miracle that we were there, but in many ways it is. My mom was the orchestrator of the Healing flags project at Ronald Mcdonald House. This was something she was consulted about when they began the new flags project in honor of His Holiness. So we assumed that maybe we would be able to attend. Well, as it turned out they had to make decisions about attendance, and it was only allowed for their biggest financial contributors and the sick children from the house. Obvious choices. So as of Tuesday we believed there was no way we could attend. However, on Tuesday night at 7pm my mom's cell phone rang, it was Honey, the executive director of the Ronald Mcdonald House. She had mulled it over, and it just didn't feel right to her that I could not come. I am so gravely ill, i need all that i can get as i work towards my transplant. This is what she told my mom (quote obviously summarized). She bent the rules, and we were allowed to go. We had previously filled out the paperwork needed to attend, because my mom had helped to install the flags, and she did so in hopes that we might go. How awesome was that? Thanks mom!

This experience truly was the greatest gift I have ever received, as of now. The ability to attend and the blessing I received.

When he entered the room, he touched many of the children, asking some what ailed them. One boy, sitting infront of me with his father had liver cancer, and his surgery was scheduled for that day, but the doctors agreed to postpone it so he could meet the Dalai Lama.

He just spread healing and light to the whole room. He spoke for a few minutes about the sadness of children being ill, but if looked at with a new perspective it isn't sad. They can find other ways to look at it. He also spoke of Tibetan medicine.

He traveled around the room, blessing the children, and some of the parents who were there. The house provided white silk scarves to be used for the blessing, this is traditionally known as, kathas. I stood up and moved forward from my second row seat, to the front, where he could reach me when he came by.

Once he reached me, time stood still. He knew exactly what i needed. He went to quickly put the katha on my neck, and took my hands in his, and realized i needed more than that. He stopped, and looked me dead in the eye, staring. I don't know how long this actually was, my mom thinks it was about 30 seconds or so, but it felt like time stopped. With all hope and openness i looked right back at him dead in the eyes. I have not been this close to many people in my life. But this was close. He held my hands, and looked into my eyes, and then kept looking and touched my face, and my hands again. When he finally let go, I could barely utter "thank you". It was the most intense experience of my life. It was such a personal experience I can't share all that I learned from it, and i will continue to learn as it settles in my body. But i can tell you that I heard my mind yell out to me "Woah, NOW, I am ready".

His Holiness also held my moms hand, and offered her a blessing. This was such a tremendous gift for both of us. A culmination of lifes work for my mom. For her project to be honored and seen by the Dalai Lama himself! WOW. I don't think she even understands the magnitude of that either.

We were not allowed to have cameras or I would have included a picture. But there were paparazzi there, and the pics should be available to the house at some point, and we will get some i am sure. I can't wait! But until then, i will leave you with this...

Om Mani Padme Hum

Namaste...

Please Help!

Here is the predicament... Waiting for transplant.... Feeling unproductive and isolated from society. We can't participate in life actively like we used to. I miss using my brain and I am totally bored with just simply reading or doing my painting right now. We are trying to discover something we can do to maybe better society, help someone, make something... Something to keep our minds and bodies focused on something other than the day to day treatments, medicine, and eating. If we do eat, pray, love anymore we might become Obese, thoughtless, and hateful... so we need to shift focus. Please, if you have any suggestions let me know!!!! I am calling all creative ideas...
Thanks for your help!!!!
love,
Anna

Emily and Dan

This weekend, Sat, October 9th was Emily and Dan's wedding. I was supposed to be a bridesmaid and support one of my dearest friends as she prepared for a life with the man she loves... but CF took this from me. This is the first time that I have truly not been able to do what "normal" people do. The wedding was in Napa, and I just can't travel anymore. My life is too difficult, and my health is just too fragile. Also, I have a short leash being on this transplant list. I need to be able to get to the hospital at a moments notice... so I just couldn't do this wedding. Luckily there were some very nice woman who were there who made sure to use a flip cam and take lots of pictures, and I will be able to see what I missed. But it was just so painful to not be there to support Emily and Dan, and I apologize greatly to both of you for not being able to make your day special with you, but I know that everyone there had a great time and basked in your love for one another... I wish you the best life together, and to live in love and happiness....

Mazel Tov!

So what did you do today?

Today started out with an excitement to watch Oprah. Today was the day she had a woman with dissociative identity disorder on the show. I love to hear about fascinating psychological disorders, blame it on the day job... or uh, i mean my potential one day i will have one, day job. Because here in CA Oprah isn't on until 4pm, I had a long day to get through until it was time. So today was about not getting antsy while waiting.... did i learn that lesson? Not today!!!! Mom left to go to physical therapy for her knee, then returning a few minutes later after arriving and being told her appointment was YESTERDAY... so our day got off to a weird start. i was folding laundry, so she helped me. Once that was done I ended up passing out on my face at the foot of my bed, for like 40 minutes. Let me tell you waking up like that while wearing O2 on your face... you have to PEEL the cannula out from the indent on your cheek. WONDERFUL feeling... So now i woke up, and came downstairs to see mom passed out on the couch too. So i computered around.... then she woke up and i think at that point we got some lunch together, and ate stuffed mushrooms and miso soup. It was pretty yummy. The whole time we were talking about how we can't wait to watch Oprah... let me tell you, this day dragged on and on and on!!!!! So then after lunch we walked to the post office to mail some more Banana Bunch shirts, and also healing flags i made to be displayed at the Ronald McDonald house at Stanford next week, when the Dalai Lama comes to visit. so my mom mailed those off while i sat and waited for her, and tried to catch my breath. We walked home, but i had to stop at the park to rest some more. It is weird having lung disease... you gotta keep stopping to breathe. Very inconvenient. So then it was ALMOST Oprah time. We made some tea and i ate a snickers... I have been very hungry today... FINALLY it was Oprah time. Then we watched the fascinating story... we did a treatment, and ate dinner. Dinner time was Desperate housewives time. It was the first episode of the season, on Tivo. After that we waited till Casey got home... and this is when more boredom and chaos ensued. Laying on the couch out of our minds giggling, and yelling about what it is like to just be waiting and waiting. today was a weird day. We finally looked at the clock, hoping it was 830 or so, but it was only 730!!!! We had so much more time to go before treatments.... once Casey came home we finally got to watch GLEE. That was fantastic. Then it was still only 830, so i started my nebs early since i was freakishly not even full from dinner... so we then watched Modern Family. Both very good episodes. It was a great TV day... but honestly our teen angst was more than fantastic TV can heal. So we proceeded to finish up the treatment and mom went home. I just ate dessert, I made a cut up apple with brown sugar, cinnamon, nutmeg, allspice, heated so it was like pie. I put some ice cream on it. I had oatmeal cookies and milk too. and I AM STILL NOT FULL. I don't understand this bottomless pit i have. Hopefully tomorrow i will not be so hungry. So now i am playing fetch with Jack. He hustles over and drops a stuffed mouse at my feet, looking at me longingly to throw it for him. He chases it and comes right back, again! Again! He is the cutest when we play this game. Once i am done here, i will Scoop some poop and go to sleep... So what did you do today?

More Banana Bunchers!

Anna and Linda... two of the bunch

Banana Bunch Sisters

My new buddy Eric, Bananas and all!

Wendy Sending the healing vibes :)

Molliee and Martin Thumbs up in LA :)

Not so fun Sunday

The truth is that i am a sick person. I am not a healthy person. I tend to forget this. Call it eternal optimism, naivete, or just plain denial... but i totally forget this sometimes. I often convince myself that it is a mistake that I am on the transplant list, but today i feel it.
I just feel yucky.
When the weather starts to change from warm to cold my body detests it. My joints ache, i am unable to get warm,lethargic, i get cranky. I have no desire to do anything. My lungs hurt today. My airways are tight, and I just feel a general malaise. This is a drastic change from yesterday. I had fun with my sister, we went out to lunch, sat in the sun, ran errands, went out to dinner... it was a nice day. But i didn't sleep that well last night, and today i woke up with the yuckies. I am thankful that still, even listed, more days are good days then bad days... but bad days like this (when i didn't do the dishes from friday, Casey is cramming to get all his reading done, and it is cold outside) i just don't feel that great. It is days like this that i know i am ready for a change. I can't keep living like this. I can't pull my weight in the household. Everything revolves around the sick girl. And to top it all off i just dropped my snickers on the floor... but i am going to eat it anyway because i haven't had my transplant yet ;)
I also realized the great tragedy that is my life today. I realized that I will never be "well". I might get a transplant and be able to have healthy lungs to go run and jump, and swim with, but i will never not have a disease. I will live my entire life with this disease. I know that I should know this, it is genetic, but still... just the absolute truth that I will never get to be a healthy person sank into my soul today.
Strong women always give the advice that you should never depend on a man. You should always make your own money so you can survive on your own. I will never be able to do this. I will always have dependency one step away from me. It is a very scary world. I need you to support me. I can't support myself. It is extremely humbling. I will always need a doctor, and Casey and my family. I will never be able to do it alone. Now, I need my donor... To help me through this hard time. For me, the strongest I can be is to admit that I need help. It just feels like i am letting the woman's movement down... I am an educated woman, who is in desperate need of support. pretty pathetic if you ask me. But all i can do now is swallow my pride and keep going... i just have to keep on living. I am so grateful for those who support me because I could never do it alone. I would wither into non-existence. It is a hard reality.
But I am opening my arms up right now to welcome my donor and his/her family into my life, now. I think i am truly ready for this gift. I need to make a change. I can't keep living like this....

Newest Anna Banana Bunchers

Just got this pic in my email inbox. I was so excited and honored to share this with you all. I can't even believe that they took this picture. My cousin is Adam, who is the one not wearing the shirt (not sure why?) and he had ordered 4 shirts, and didn't tell me who they were for, well, i guess we know now!

Here is Jack Johnson, Adam Topol, Merlo, and Zach Gill sportin the Banana bunch shirts....



Thank you so much guys!!!!!! This is such a kind gesture, and i am honored and touched!

I am honored and touched by all of you taking pictures in your shirts. It really means a lot to me and is helping me build up the courage i need to go and kick butt in this transplant... Thank you and love to you all... keep the pics comin!

October

Well here we are, October, and still waiting for my transplant to happen. I know it isn't really that long, but on day 67 I look back at my time waiting. I remember sitting around the table with my family all making guesses about how long it would take to get lungs. My sister suggested not until October 3... OCTOBER 3rd? THAT IS SO FAR AWAY!!!! Well, now we are here, October 1. It hasn't been as horrible as i thought it would be. Actually, it is just like life... you live it day to day not knowing what the next day will really bring you. When I wake in the morning, i always think, will this be the day i get new lungs? One day it will be!
I honestly feel that it will happen this month. I could be totally and completely wrong, but it makes sense to me in my bones that this will be the month... so we will see.... You can call me crazy, hopeful, naive, stupid, or whatever, but it makes me feel good to have intuition, or just pure desire that this will happen soon. I know there are many others who have been waiting longer, but I feel for me, this will happen. We will see. Don't worry, I won't go claiming that I am psychic if it does happen this month, but i will be happy :)
My mom is having a hard time waiting right now, she wants to get on with her life. I don't blame her. For me, because I am "healthy" and stable right now, i don't mind waiting. But i don't want to get sicker, that would not be fun. I don't want to have to wait so long I have to go back in the hospital for a lung exacerbation. So yes, I guess i am getting antsy... but I have faith it will happen at the right time, and the day the phone rings will be the RIGHT day :) Lets just see if it is actually in OCTOBER :)