Joyeux Noel

Hi from Julie! We don't have another guest blogger lined up until 2009 so... It gives me a chance to catch up and acknowledge the sheer volume of 'stuff' that happened in 2008... A great website that was just a vague idea in 2007 was started; wonderful people are offering their help; my son has been working flat out... Thank you to Thomas, Marilyn, Rose, Scott, Mahmud, Pablo, Adele, Esmee, Hilary, Daniel and Cobe, Carolyn, Jim and Sheila and all the names I forgot to add here of people whose help is priceless. And thanks Cobe for the very first precious cup of Cobe-tea!

Just before Christmas I saw a movie - Joyeux Noel - which is a true story of something that happened in 1914 in the cold, muddy filth of the World War I trenches: soldiers from Germany, France and Scotland put down their weapons - literally - and celebrated, played soccer and drank coffee together on Christmas Eve/Day. They also buried their dead. Friendships formed but, tragically, the generals (governments?) separated these 'real' soldiers - who were no longer quite so happy to kill each other - and redeployed them.

My dream is for Peace forever among all Nations of the World - a bit lofty but a very real dream because I see ordinary people of all colours and faiths working happily together and I wonder who it is that's pulling them apart again?

Over the holidays I also watched (had to!) several documentaries about the underprivileged, power, greed and violence... And whilst 'ordinary criminals' have been found technically guilty, there is quite a bit of evidence that points towards government involvement. What's really going on here? Again, I can't help but wonder... And pray for strength to 'stay true' - whatever the temptation - for all of us - particularly governments - in the future.

I also watched some great videos from Gregg Braden (thanks Thomas) and the Science of Miracles which are amazing and worth watching (there are 7 parts). Many people are familiar with these ideas but Gregg's explanations seemed beautifully clear to me? - Click Here...

I would like to wish everyone a Successful and Peaceful 2009 and hope that this holiday season was one of family reunion and visits with good friends for you. I look forward to more fabulous guest bloggers in 2009 - and thank you again to this year's guest bloggers for your great posts in 2008.

Guest Blogger -Sarah

Todays guest blogger is Sarah. Thank you so much for sharing your story, Sarah!

Hi everyone,
I'm Sarah and I'm a Childhood Cancer Survivor. My story starts when I was five years old. I went into my parents' room one morning and said: "Mommy, my knee hurts" She said I would be fine and to go back to bed and I did so. My mother thought I just hurt myself on the playground or something. This pain persisted for two weeks and then I started Kindergarden and I was able to forget about the pain for a little bit. However on the second day of school I told my mother: "Mommy, I don't want to go to school tomorrow" Of course this worried my mother, and the next morning I awoke with a fever of 103 and my mother brought me to the ER at Carney Hospital in Brockton, Mass.

There I was diagnosed with osteyomitolytis which is an acute inflammation of the bone marrow. I stayed at that hospital for a week. When I wasn't better by the week's end the doctors did a biposy on my right knee and that's when they found the leukemia cells and on Sepetmber 21st, 1990 I was diagnosed with Acute Lymphoblatic Leukemia.

I could not be treated at Carney so, I was transfered to Floating Hospital for Children in Boston. I stayed at Floating for a week receiving high-dose chemotherapy, Prednisone, and many other medications. There are some bad things I remember from the hospital, and some good things too. My Dad would come to the hospital when he left work and come take my Mom out. Before my Mom left she always bring me Skittles and Starburst. Starbursts, chemo and my stomach all got along just fine, however, with Skittles not so much.
"Look Mommy, rainbow colored throw-up!" I remember going down to surgery to get my catheter put in my chest so I could get chemo, my blood counts looked at and go to school. I Went into remission on October 15th but still needed three years of chemo, blood tests, bone-marrow tests, and spinal taps. For me the scariest part of treatment was the spinal taps. I was not losing my hair or the surgery for the catheter in my chest but those painful needles.

I went back to school, then I wanted to go back to the hospital. The kids at the hospital played with me, the kids at school didn't play with me. No one educated my classmates about cancer because people back then were still stupidly afraid of cancer, I'm sorry if this sounds harsh but, get over it! Cancer exists and if don't talk about it we won't find and the stigmas against patients and survivors will never go away. We should not be afraid of cancer anymore, its almost 2009 we need to get over this cancer-phobia.

I've been in remission for 18 years and I am graduating from college in the spring and I plan to be a hospital psychologist for girls and women with cancer. I often wonder what my life would have been like if I didn't have cancer. I love to draw and I wonder would I have my art abilities if I didn't have cancer? Would I be me if didn't have cancer?

I also had trouble seeing myself as beautiful for a long; I finally accepted my scars when I was 17. One scar is on my right thigh from when I was misdiagnosed. I have one my neck from when my catheter was removed when I was eight and I was half way done with chemo, and her sister scar is on my right breast. I think that one looks like a Phoenix. I had finished taking a shower and I noticed my scars in the mirror and I thought “Damn, these are hot”. My Phoenix-scar made feel beautiful about being a Cancer Survivor but not a woman. I don’t think I felt beautiful as a woman until now. I’ve never had boyfriend, I’ve never been kissed, so I thought I could never be beautiful for anyone; then I realized I had think of myself as beautiful before a man thought of me as beautiful.

I have forgiven cancer for the most part, after all most of problems I face today are from chemo, not leukemia. What I really want to know is why does such a horrible disease have such have such a positive word at the beginning of its name? Cancer is trying to tell us something, I think we should listen to it.

I love this...

Guest blogging is beautiful! I love the idea of getting to know people better - and I love the whole idea of weaving a strong web in interconnected links to support us all... Thanks Baldylocks for being the first and for having this great idea.

I would like to invite someone else to come forward and write a blog for us... Baldylocks has offered to help and any questions or interest can be directed either to her at: http://baldylocks.blogspot.com/ or to me at: julie@ReBuildingYou.com

Step on up!

With love,
Julie

Guest Blogger -Baldylocks

Today I thought I would add a post from a guest blogger. She was diagnosed with Leukemia at 33 in the last two weeks of her university degree. After several rounds of chemotherapy and a bone marrow transplant from her brother, she is now trying to get back to a new normal. You can visit her blog at Baldylocks.com

Da Funk
I've been floundering recently. Almost three years of being ill in bed has taken a huge toll on my body and my psyche. I've gone through a long cycle of fear, anger, hope, and an endless waiting for things to get better. I started out with a very solid belief that I would be fine. But after 3 years in my bed and struggling to get through every day I eventually wondered, will I get better? No doctor would say.

The prednisone and all my other drugs have made me so ill. My strong band of hope that I would see the end of this has grown thinner and thinner until it was only a battered thread.

This whole cancer dealy was only supposed to be a bump in the road of my life. One day I would wistfully look back at it, throw my head back and laugh in a conquering sort of tone. Now I know I will never be the same. I realize it's been said a hundred times over by a hundred different people in a hundred different contexts, but it's new to me. I will never be the same.

Sadness has crept in. Frustration has seeped into every inner corner of my being. With it came listlessness and apathy. Pain, medication, severe sleep and fatigue issues have clouded my brain making it feel like it's stuffed with cotton.

I feel like all the control I've had over my life has been taken away from me. My body has become my betrayer.

I felt a little like putting my head in the oven.


Perfect :) I find being severely at the bottom a real catalyst for change. There is no place to go but up. I've decided to kick this suck hole despondency.

I made a plan. Despite all the things I struggle to get done every day, I am going to come first. I took myself straight to the doctor and to a Cancer Agency counsellor as well as a massage therapist. The doctor made a priority of sorting out my lack of sleep. The Amtitriptoline made me so much worse. I tried it for about 5 days but after a midnight online shopping spree I had no recollection of, I went back to the Dr and stopped taking it. The upside of that is I have been receiving nice little "presents" in the mail for the last two weeks. My GP upped my current sleeping meds which don't give me any trouble. I've also been off my main tormentor (prednisone) for 4 months.

Getting a better sleep has made me feel a bit better which in turn has enabled me to do a little more. I been forcing myself to go twice a week to my arthritic waterfit class. No matter how suckathetic I feel, I go. When a friend asks me to go for a walk on the beach at an unGodly hour, I say, Yes. I was asked to go to a salsa dancing class. I said, Yes, and went but was only able to sit and watch. At least I walked up the stairs. In short I am stretching my boundaries and if I suffer after, at least I know I tried.


I hurt, I feel awful, my body is protesting but I feel hopeful again. I have goals again. I feel like I have some control in my life again. My body is my goal. It's not my betrayer, it is a part of me that has had a hard time and deserves a little compassion.

If I'm not going to save me, who will?

Light The Night Walk for Leukemia

Hello! We walked for little Jobe - and my beautiful friend Rosanne too who was with us - this year and last year. She's a survivor (we're searching high and low for a new term instead of that one? If you have any ideas, we would love to hear them...) Survivors caried white balloons. We had red ones and there were gold balloons to commemorate those who are no longer with us. Events like this really help - not only in the money they raise but just because 'they're there'... I chatted with a father who was there with his wife and 2 other kids while their young daughter was in hospital undergoing her second round of chemotherapy. They were so glad to have somewhere to go where they felt they could go... They just felt too 'shell shocked' to be anywhere else... I was very happy to be there. After the walk - and 5km is a long way when you're still recovering - we partied with a firedancer (above) and music and snacks... Thank you very much to all the generous folks who sponsored us - we really appreciated it. Here are some photos:

Sponsor little Jobe and help support the essential support services...

Please sponsor Christine's walk for Jove - if we all donate even the smallest amount we could help to spread the Light - and Luck... Click Here for Christine's sponsor form. All the assumptions that we naively make about our luck are all relative. If we feel lucky, we feel alive and loved and blessed and just all-round warm and good. We feel wonderful. My daughter-in-law and 3 of my beautiful grandchildren (on the left) are walking in this year's 'Light The Night' walk (for the 4th year running) for leukemia and blood disorders for little Jove (on the right). Ironically, Jove's mom, Iris, walked in Light The Night too - before Jove was even born... My hope is that if we all pitch in and sponsor her - and little Jove - he and hundreds of other precious children like him will be a little bit luckier. Click Here for Christine's sponsor form and more information about the walk - we'll be there and we would love for you to join us too!