Lovely couple.......

Results are in....... and Hero's!

Well, well...... now that I have stopped getting so 'frilly' while waiting for the pcr results, now they only take 2 weeks to come back, instead of the full and very long 3 weeks before now........

And they are.................... virtually the same again. Just a tiny hop DOWNwards to 0.19% on the International Scale. It's amazing that just that very small, tiny little difference in test results makes the muscles at the corners of my mouth to pull outwards and upwards without any thought and seems to open my breathing tubes at the same time. And I did not even know that I was tense.

So - another quarter has gone by and all is still on an even keel and again, the world feels lighter, the day brighter again, the sunset more beautiful and everything seems to be less jagged. Not that any of it was, but good news in the pcr department always greatly improves an evening for me :)

Many things float through my mind, sometimes driving me nuts and other times reminding me how good life is....... Yes, there are the dark and nervy times and yet they can only be recognized because of the good times in our lives. Thanks Cat, for reminding me! No matter how hard a day is, if we just open our eyes we cannot help but see some light.

There are newly diagnosed CML-ers all the time and their road is really scary but there are many good and successful stories; people living with cml and people surviving transplants too.. There are the good stories with this disease, its just that most people write when life is not 'normal' and stop when it all goes back to that new normal... This is good, but not so good for anyone newly on this cml road.

Today I have been thinking a lot about donors. They are such special people; people who sign up to save a life - on purpose with thought and time used. It is no accident that they are in the right place in the right time, no co-incidence, no luck. They save someone's life on purpose! Not only do they save a person, they save the family, the extended family, the friends and even the community. How awesome is that? How awesome is a donor........ That's not a question - its a statement.

Today I got an email and in it was a link to these stories of donors....

Tom’s Story: From Marrow Donation to "Extreme Makeover: Home Edition"

I joined the Be The Match Registry^SM in 2000. I’d heard about a local Colorado girl who needed a marrow donor. Unfortunately, she didn’t make it, but her story stuck with me. I researched where I could join the registry, then drove to Pueblo where I joined through Bonfils Blood Center, a recruitment center for Be The Match.

Getting the call
Two years later, I was called as a possible match for a woman, but she developed complications and couldn’t go through transplant. It was an absolute disappointment for me to realize I almost had the chance to help somebody out, but then I couldn’t.

In 2004, I received another call. This time the patient was a 29-year-old wife and mother from Illinois. I went in for further testing and I asked a lot of questions. I knew I was going to go through with the marrow donation –- it would be foolish and selfish not to. But I asked a lot of questions. I wanted to understand the science.

The donation experience
People ask me a lot of questions about how bad bone marrow donation hurt. But you are under anesthesia during the procedure. It hurts some when you are awake, but let me put it this way: I had the procedure on Thursday and was back at work on Monday.

On the day of the donation, I wasn’t worried about pain or discomfort. My one fear was that the doctors would say “You can go home; we won’t be going through with the marrow donation.” I just wanted to give the patient an opportunity to live.

And donating really wasn’t a big deal, in that the effort it took on my part was minimal. Yes, you can say I saved a life, but my part was just a little cog in a machine built by scientists and doctors.

Making contact with Joey
After the one-year waiting period, I learned my recipient’s name: Joey Stott. We talked on the phone and sent a few e-mails. Prior to contact with Joey, the whole experience was very rational. There was a logical progression in every step. When I got to talk to Joey, it all became very emotional.

All I hope for Joey is to have a great life. To have the opportunity to continue to be a wife, a mother, a daughter -– to have more time with her family.

So when I found out ABC’s Extreme Makeover: Home Edition was building Joey and her family a new home, I was happy to help with the project. I hope that when the episode airs November 15, more people will know about Be The Match and how easy it is to save a life and keep a family together.

October 07, 2009

Wilbur's marrow donation experience

Wilbur donated bone marrow through the National Marrow Donor Program, which operates the Be The Match Registry^SM. This is his story.

The opportunity to pay back
My wife works for the post office, and this was how we became involved. (Editor's note: The United States Postal Service's long partnership with Be The Match has added more than 47,000 donors to the marrow registry.)

But the reason for my donation goes back to before I was born. It hit me like a brick wall when I got the call to possibly be a bone marrow donor:

I've finally found a way to repay the person who not only gave me life, but also saved my life very early on.

My mother's choice
While pregnant with me, my mother was told she had developed a form of cancer. The doctor told her she could treat the cancer but the baby wouldn't live through the treatment, or she could bring the baby to full term but she would die because the cancer would be too far along. Without pause, my mother decided the baby would live.

As it turned out, the doctor was wrong and my mother didn't have cancer. Had she decided to have the treatment, I wouldn't have been born. Service to others, putting them first before her own needs -- that's how my mother, Mary E. Baughn, lived her life. (After 74 years and two bouts with cancer, Mary passed from this life to her heavenly reward.)

My choice
Second thoughts about doing this? Never entered my mind!

I hate needles and my family knew this. They all wondered how I would go through the "pincushion" phase.

Well, it wasn't that bad. I really never had a lot of pain, even after the marrow collection procedure.

Everyone I talked to at the National Marrow Donor Program, especially my contact person Cindy Hofkes, made me feel like I was the only person they were dealing with. The donation procedure at Miami Valley was a breeze, thanks to all the wonderful people there.

Only a few people get a chance to possibly save a life. Sign up! Be a match!

October 06, 2009

Luz’s Bone Marrow Donation Experience

Luz donated bone marrow through the Be The Match Registry^SM. (Luz is shown with her husband, Santiago, and daughters, Gloria and Grace, who all supported her through the donation process.)

Luz's donation story:
I decided to join the registry when our church was looking for a match for one of our pastors. I joined in the summer and by October of the same year I received a letter stating that I was a possible match for a patient.

Of course, there was no question in my mind about donating. I have two daughters and the girl that would be receiving my bone marrow was only seventeen.

"Seventeen, wow!" I thought. "She should be thinking about prom and graduation, not about whether she would find a donor."

I went back for more tests and it was determined that I was a match. I donated marrow.

My experience was hassle- and pain-free. Veronica -– my donor center representative -- was very professional and compassionate. I did some research on the internet and found that it was supposed to be painful, but I did not experience any pain or discomfort.

I donated on Wednesday and by Saturday I was back at work. I knew I was in God's hands. By being exposed to the idea of donating marrow, my older daughter found that she could be a volunteer courier, and she joined the program. It's her way of contributing.

Donating was an amazing experience and a little surreal. Imagine, being a match for somebody who is a total stranger. Wow!! Isn’t God amazing.

I hope that by realizing that this was a pain- and discomfort-free experience, others will be inspired to donate. I am thankful for the experience.

----------oOo-----------

How can you help? Here are three ways, just for starters!

Help save a life this holiday season

You may not be called as a donor this holiday season, but you can still make a difference. Here are three things you can do today:

1.	The easiest gift: Tell at least 5 friends how they can save a life.
2.	Add a note to your holiday letters about your commitment to Be The Match and the opportunity to save a life.
3.	Help us raise $1 million for patient assistance so more patients like Joey Stott can focus on healing.

-----------------oOo---------------

If any of you know or are a donor and would be willing to tell your story for this blog........ please do so! I would LOVE to hear from you....

love and light

from one very happy, relieved and smiling

Annie

Life thoughts......

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Locked but lovely.....

How could anyone with a child with cancer be feeling lucky and happy and fortunate and blessed?? Well I do. This past week since we have been back, I have spent a fair bit of time catching up with CML news and blogs and support groups and people and..... well, I feel so incredibly fortunate that Steven is doing so well. I also feel so incredibly fortunate that he takes this disease seriously enough that I don't have any reason to worry about him taking his meds, but at the same time, that he does not let it run or ruin his life.

Unfortunately I found a couple more new blogs and websites of people recently diagnosed with CML... http://cancercloud.org is a new website for information, research, patient and care-giver information and support. Allison's 84 year old father, Angelo, has been diagnosed with CML and they have set up this site is dedicated to him.

Here is Ryan, recently diagnosed and fast learning about the effects of taking Gleevec. Head over there and leave him a message and some encouragement. No matter how 'easy' it goes, those first months are never easy at all.

And then there is Rassie who is not only dealing with a new diagnosis of CML, but fighting to get the insurance company to approve Gleevec for him as well as dealing with a work related injury that has him in hospital, rehab and a wheelchair at the same time! His wife, Amber writes the blog in a wonderful and calm way.

Reading these blogs brings back those early days of cml, when everything was so new, crisp and terrifying. Those days when a comment from someone, anyone, counted for so much -like a hand to hang on to in the scary nights. Just knowing that others cared really made a huge difference in my ability to be able to process it all and move forward. It still does.

My nephew got married this past weekend, it was a lovely wedding :) and at the end of the day I realized that once again, I had a normal day! A day where cml flitted into my mind only briefly and with no serious thoughts to keep it company, a day where I was once again, fortunate enough to be able to take photographs of everyone having a wonderful time, my son included.

How happy, blessed, lucky, fortunate and all other wonderful descriptive words you can think of, I felt. And feel.

Sometimes the door to the way of life we expected is irrevocably closed and locked. But does that mean that there is no beauty in that too? This road has brought me so many wonderful people, amazing friends and so much love and light and laughter and growth and beauty and peace - yes, peace. That door to our other lives before CML is permanently locked, but this side of it is beautiful too....

love and light

Annie

In Dr Druker's words........

A CONVERSATION WITH BRIAN J. DRUKER, M.D.

Researcher Behind the Drug Gleevec

By CLAUDIA DREIFUS

Published: November 2, 2009

Dr. Brian J. Druker, 54, an oncologist at Oregon Health and Sciences University and a Howard Hughes Medical Investigator, is one of three winners this year of the Lasker-DeBakey Clinical Medical Research Award, often called the “American Nobel Prize.” Dr. Druker shared the honor with Nicholas B. Lydon, a former researcher for Novartis, and Charles L. Sawyers of Memorial Sloan-Kettering Cancer Center, “for the development of molecularly targeted treatments for chronic myeloid leukemia, converting a fatal cancer into a manageable chronic condition.” Here is an edited version of a conversation that took place last month in New York:

Brian Lee for The New York Times

Q. WHAT WAS LIFE LIKE FOR PEOPLE WITH CHRONIC MYELOID LEUKEMIA, OR C.M.L., PRIOR TO YOUR RESEARCH?

A. Life was pretty miserable. If you were over 40, the main therapy was interferon, which prolonged life for maybe a year in perhaps 20 to 30 percent of patients. Interferon made the patients feel awful — like the worst flu. The only other hope was a bone-marrow transplant for younger patients. The problem there was that the death rate in the first year was 25 to 50 percent.

C.M.L. patients were always difficult to see because both of us knew that the clock was ticking and there was virtually nothing that we could do about it.

Q. It must have been depressing to be an oncologist under those circumstances.

A. When I started my training in the 1980s, you rarely cured people. You felt, “if I can give my patient extra time, I’ve been successful.” But I could see there was a transformation of cancer treatment on the horizon thanks to breakthroughs in biochemistry and genomics. I wanted to be part of that, which is why I was a physician-researcher.

The way I’d been trained, cancer was seen as something like a light switch that was stuck in an “on” position. You were given a baseball bat, which was chemotherapy, and told to knock the light out with the bat. I thought, “Why don’t we just try to figure out why the light is stuck on, then we can fix it without breaking everything.”

So I started my laboratory career studying the regulation of cell growth — what turns the switch on, what helps it shut down. And that’s how Gleevec is different from earlier chemotherapies, which basically poisoned every cell in the body in an attempt to kill the cancer. Gleevec turned off the light switch and only killed the cancer cells.

Q. How did the idea behind Gleevec first come up?

A. By the late 1980s, C.M.L., though rare, was a cancer that scientists knew a lot about. We knew, for instance that a chromosomal abnormality existed in every C.M.L. patient. We knew that this abnormality created an enzyme that caused the uncontrolled growth of cancer cells. If you put this enzyme into animals, they got leukemia.

So in 1988, Nick Lydon, who led a drug discovery group at a pharmaceutical company that eventually became Novartis, came to talk to me. He was interested in developing drugs to block a family of cellular enzymes implicated in several cancers. I said to him: “If you want to develop targeted chemotherapies, C.M.L. is the disease to study. We know the most about it — and, if we can figure out a way to block this enzyme, we can turn off the cancer switch.”

So in Nick’s lab at the pharmaceutical company, he began screening for agents that worked on C.M.L. He’d send me his best compounds. I found one, STI571, that was better than the others; it would kill every C.M.L. cell in a petri dish. By 1995, STI571 was a lead compound set for clinical development.

Q. So Gleevec was on its way?

A. Not quite. Gleevec was a completely different class of drugs than what was used against cancer. Most researchers thought it wouldn’t work. Then, in 1996, before we were about to go to trials, Nick’s company merged with another, and he left. Gleevec was now caught in the changeover. I lobbied with the new executives. After some ambivalence, they agreed to go forward with Phase 1 trials. I think they felt it wouldn’t work and they could get rid of us afterwards.

But during clinical trials we saw this miracle: Once the patients were up to effective doses, we got a 100 percent response rate.

Q. Had that ever happened before in a clinical trial?

A. No. Never. You’d see patients where interferon wasn’t working, and they’d been issued a death sentence. Suddenly, all their hopes for the future were restored, and, with minimal side effects! This was around 1999, and the Internet chat rooms were just beginning. Patients in the trials began talking to each other like they’d never done before. I’d see a patient, and I’d read about it on the Internet that night: “few side effects,” “100 percent response.” Patients would come to me and say, “My doctor has never heard of this drug.” I’d never written it up. I hadn’t presented the data. Their doctors thought I was a charlatan. For a lot of people, Gleevec was simply too good to be true. But these once-dying patients were getting out of bed, dancing, going hiking, doing yoga. The drug was amazing.

Now the drug company had to make another decision. They hadn’t made enough drugs for a large-scale Phase 2 trial. But patients knew about Gleevec, and many more wanted to be included in the trials. Through the Internet, they generated a petition that landed on the C.E.O.’s desk, asking for greater access. That’s how Phase 2 was rapidly expanded.

Q. YOUR FRIEND AVICE MEEHAN OF THE HOWARD HUGHES MEDICAL INSTITUTE SAYS THAT YOU HAVE THE MOST AMAZING PERSEVERANCE. IS THAT WHAT IT TOOK TO MAKE GLEEVEC HAPPEN?

A. I think I’m more perseverance than smarts. There’s a basketball player who says, “Hard work beats talent when talent doesn’t work hard.” Well, I work hard. I understood that this project was too good to give up on. My patients needed me to do something to help them. I did everything I could by getting them a drug I thought would work.

When the drug looked like it was finally going to be approved, I was interviewed by a reporter from People magazine, Alexandra Hardy. She asked, “Who are your good friends?” I said: “I don’t have any. I work, eat, sleep, go to the gym.” She said: “You’re pathetic. You’ve got no balance in your life.”

Well, there is now. Alexandra and I got married, and we have three wonderful children.

Q. Gleevec was ultimately proved effective against two cancers, right?

A. Ten. It’s now F.D.A.-approved for 10. Gleevec went to market for a small disease, 50,000 patients, and it later got tested for other things. It’s now used by 200,000 patients worldwide.

Q. Do you see any of that?

A. I don’t see a penny, though that never was an issue for me. When I obtained the compound, it was already patented. I wasn’t going to get to test it if I tried to put my mark on it. I wanted to work on it because I thought it was going to be the way to treat C.M.L.

You know, my patients were people who’d been told “to get their affairs in order” because they were going die soon. And now some of them play with grandchildren they’d thought they’d never live to see. That’s worth more than money.

----------------------------------------------------------------------------------------

What a man Dr Druker is. Every time I look at Steven, it's because of Dr Druker...... It's as simple as that. I would not be seeing my child, if not for him. Thats incredible, humbling and creates a depth of love for this man that goes beyond anything 'normal'.

This article made me realize again just how tenuous life is, how one man stood between my life now and a life that would have been just unimaginable....

Thank you, Dr Druker........ thank you!

love and light

Annie

Under a rainbow........

Is it a safe place, under a rainbow? What about a double rainbow? If it was, guess where I would put ........... well, everyone I know!

We have just come back from the most incredible vacation... A week on a houseboat in the Amazon Jungle, then two days in Quito, Ecuador, touring that beautiful city with a guide that was so passionate that it was easy to get to love the place in those two short days. Then off to the Galapagos Islands we went, for an eight day cruise around those amazing islands, seeing many incredible creatures and enjoying the ocean, fresh air and sparkling night skies.... Then three days in Lima, Peru, across the Andes Mountains to the gorgeous town of Cusco, the Sacred Valley of the Inca's and .... yes, Machu Picchu! 28 days of incredible beauty, wonderful people, fascinating creatures, delicious food, flowers and experiences. Unforgettable. Link to that travel blog: http://galapagobaggs.blogspot.com

and to some of the photos: (see the folders on the left)

http://s761.photobucket.com/albums/xx257/GalapagoBaggs/

And all through this time, cml travelled along with me, but mostly at the back of my mind. I found very little need to talk about it at all. I honestly think that deep down, I really needed a good long break from this cml thing - and I mostly succeeded. It was interesting to realize that it was during our wait in Miami for the connection flight back to Atlanta, that that is when cml came back again, dates started running through my head and started feeling the need to catch up with everyone and the latest cml news. I am so incredibly fortunate that Steven is doing so well that putting this all on hold was even possible.

During my catch up after we got home, I found this blog entry on Matt's Blog. It's about approaching a stranger who obviously has cancer, even though you don't know them. Under what circumstances is it right? When we were on the ship in the Galapagos Islands..... well, this is my latest experience on that subject........ I overheard a small group of people discussing a lady who had just joined the ship - she had had her last cancer treatment on the Monday and here it was Wednesday and she was on board for a vacation. They debated whether it was right for her to do this, whether she was wise or sensible and how to react to her. In all honesty, maybe I would have been one of them a good many years ago, but these past few years had taught me some lessons and now I was slightly ticked off at this discussion.

It was not long before a tall, elegant lady caught my attention - she had the most glorious smile, was tall and her eyes twinkled. She seemed to ooze life and laughter and everyone around her broke into smiles as she almost bounced along the deck. And then she removed her cap, running her hand over her bald head as if she still had a full head of hair. This was her.

Oooooh, my feet started tapping as they wanted to go over to her and say something - anything. To tell her that......well, that I see that she had/has cancer and that........ what? WHAT?? She knows what she has/had........ did she really need me to come and tell her my version of what I saw in such a short time while she was on a probably much needed vacation to one of the most wonderful spots in the world? Did she need my sympathy or 'understanding'? Did she need to hear the story of Steven and how I deal with it? Did she? Nope... Not at all.

I am so incredibly grateful that I sat on my feet and put cottonwool in my mouth for the next couple of days. And then one morning, I found myself sitting next to this bubbly, bouncing, vibrant lady with the never-ending smile, on a the edge of a small inflateable dingy on the way to one of the islands, and we laughed and chatted and laughed some more at some stupid fish jumping out of the water right into the beaks of the swirling masses of birds above. She was funny, interesting and having a great time out on the water and we really had a good and fun ride. After that we spoke a good many times, laughing, sharing what we had seen during the day and just enjoying the islands.

We did not share any personal information, not even our names, until it was time to leave the ship. She had a calendar that the crew had given her and she was laughing because it was a 2009 calendar and well, the year is almost over! I called her "Calendar Girl", she laughed and said that her name is Laura and we hugged both hello and goodbye. The last I saw of her was when I called after her disappearing figure at the airport, "bye bye, Calendar Girl!" and her tinkling laughter trickled around the corner back to me...... still makes me smile.

Well Laura, you taught me something. You taught me, as a good few other have too, that cancer is not the main part of any person by a very long way. Your character happened first, your smile, that twinkle in your eye and your zest for life. Cancer is just a small part of you - small enough that it was hidden by all the rest of your lovely personality. You taught me that even though I have 'a story', your privacy is more important and that by respecting that, I gained so much. I saw a part of you..... a wonderful part. Thank you!

I have also learned that I can and do see past cancer to the whole person. This is something I never thought could happen so easily. I know I do this with Steven and some of my internet friends...... he is doing well enough that cml really is not the first thing I think of when I see or think of him. Even my Robo-scan has become lazy and I really see my son first and foremost - just as it should be. But it was a really good surprise that I can and did do this with someone that I literally just met and who's side effects of the treatment were very obvious. I love knowing that I have grown enough that I am no longer part of that group wondering how to react to someone who has cancer.

And just a day or two after getting home, it was time for the PCR test kit to be ordered again. Sigh. It arrived, Steven's blood drawn again on Thursday last week and now for the wait again. I have been catching up, as I said, with some of the people I follow and one that really has my attention is Hans' Blog. Both Gleevec and Sprycel have stopped working for Hans due to the T315 mutation, and he is off onto a trial and hopefully going to be able to avoid a transplant. The wonderful news is that he has a sibling match which is just great! Visit his blog and send him wishes and hopes... All the best Hans - I will be waiting to celebrate great results with you all!

Now I know that everything is going well with Steven, but what would one of my blogs be without a good foot stomping from me? Maybe it's because of that pcr kit and the waiting, maybe its........ well...... Here it is. I don't want Steven to have a 'good few other medications' to fall back on if Gleevec stops working..... I don't want him to have to go to trials, or to have a perfect match for him if he has to go to transplant one day (well of COURSE I do want all these!) But I want him to just be ok the way its going! I want him to never have to worry again, I never want to worry about how I would deal with him having to change his medications and deal with new parameters, tests and side effects. I want to see this burden lifted from him and Laura and I want the road to be smooth from here on out. I want to stomp my feet in a hissy fit and absolutely insist that this child of mine (and my girls) be absolutely ok.

There is so much beauty in the world, there is so much good...... may you all be at the end of a rainbow....

love and light

Annie

Dealing with it.....

I guess the best thing about not updating the blog is that there really is nothing going on that finds me desperately pounding on the keyboard late at night. But there have been many general thoughts swirling through my mind over the past weeks.

A good friend of mine was recently diagnosed with cancer and another died from cancer just last weekend and it makes me so sad, so incredibly sad. It's not only the loss of my friend from Florida that makes me sad, but that another person has now started down a road where everything changes, all the way to the words, vocabulary, abbreviations and even the disliking/liking of a certain shade of pink!

Almut, my Florida friend, wanted to be quiet, to withdraw while she learned to deal with her diagnosis. She needed to turn her strength inwards and hoped so hard to get better that by the time she went to hospice, we could not say goodbye - she could not speak on the phone anymore. I hope she knows that she brightened my days, made me laugh, made me mad, made me think about so many things and that I will always remember her with a smile.

And all of this brings me to realize (again - duh!) that there is nothing I can do about living or dying, there is nothing I can do that will stop any of this happening and it seems to be happening more and more. It was just a very few years ago that I could literally count the people that were important in my life that I knew who had died, on the fingers on one hand. Now it's all around me and it's all too regular that the tears flow from the death of someone else.

Yes, it's difficult - but even more so, its strengthened me. It's opened my eyes and made me see the absolute importance of living each day the very best we can. Not to waste too many moments in life - there just are not that many, after all. It's made me free to cry with joy at a wonderful story of success, of someone getting through treatment and getting on with life. It's made me see that no matter what I do, say or feel, someone else will die, will be diagnosed and will walk the long road of cancer.

It's made me see the importance of telling those close to you how you enjoy their company, their laughter, the ways they lighten my load and brighten my days. It's made me love more openly and laugh all the way from my toes. It makes me realize on a daily basis, just how fortunate I am on so very many levels.

This is life. Does that sound hard? Probably, but it is..... we cannot have life without death, no matter how much it hurts. I consider myself really, really fortunate...... my whole family is still here, Steven is doing well on Gleevec and I am able to step back and "take a break" from cancer, unlike all those dealing with it.

Of course I worry about Steven, but its nothing like it was even 2 years ago. Of course I am deeply affected by the loss of my friends and the children of the other moms I talk to.... I am also affected by the great strength of everyone I have met dealing with cancer, whether they are still here or not. It literally brightens my day to hear the great results of so many people, by their successes and their strength in getting themselves restarted in their lives and all the things they go through to get through each day... and all this fills me with the ability to live my life on a much deeper level than I ever imagined.

And so........in just a few days time, we leave for South America for one fantastic vacation and I will not be posting here for about a month. To follow our trip, click here: http://www.GalapagoBaggs.blogspot.com. So many of you will be coming with me in my heart and my mind and I will send many prayers, wishes and happy vibes out over the ocean for you all.

love and light

Annie

Going to be Grannie Annie again :)

My daughter is expecting another child later this year and to help keep track of the days, I have put a widget on the right side of this blog that will count down the days till his arrival.  Yup, it's a boy this time..... poor thing in a house full of girls!  And Lisa and Brian have decided to name him Steven William....  Awesome, hey?

Anyway - that's the news for tonight.

love and light

Annie

like a pistol...

The results are 0.22% on the International Scale. This is slightly higher than the last pcr, but lower than this time last year - so all is good :) Steven's doctor recommended no change at all so now its time to kick back, relax and just enjoy life with this worry, once again, gone for now.

It felt like an extraordinarily long wait this time and the time is almost here again to order that kit from OHSU again. Sometimes I just get so tired of it - and then the moment passes and I realize just how incredibly lucky, fortunate, blessed I am.

Steven is looking good, sounding good, and is going to gym on a regular basis too. His life is everything it could have been without cml. I know that on many levels he has grown beyond what he would have if he did not have leukemia and for this I am grateful, even though obviously I wish he did not have it. Our lives are all so good despite, and perhaps because of, cml as part of it.

So now I can get ready for our trip next month with a lighter heart. I realize how much depends on those results every few months. It's not like we put our life on hold, but the "what if" factor is definitely more often visited when it' waiting time.

Thanks to everyone who waits with me, I know I am not alone in wanting those results and it really does count a lot to know that you are right here with me.

Love and light

Annie

Tomorrow.........

Tomorrow the looooooooooong wait will be over.... breathe in, breathe out....

Goodbye Nick......

I am so sad today - Nick passed away yesterday. His mom, Diane, writes a beautiful but heart rending blog that so many times has made me laugh and cry at the same time. Today it was just tears as I read her words from late last night. Nick is finally free. But his death has obviously left a devastating path...

I cannot begin to even imagine the pain they are all going through and will be going through for a very long time. Just thinking about thinking about that makes me want to bawl all over again.

Diane, I am so incredibly sorry that you no longer have Nick where you can reach out and hold him, talk to him and see his smile and hear his voice. I am so sorry that you have this horrendous pain to deal with. I am so sorry that there is not a single thing anyone can do or say that will help make your pain go away or become less. There is no other mom that is going through exactly what you are going through right now and that must be an awfully lonely place in so many ways.  There are so many of us who have been touched by your words and your battle and of course, Nick, that are holding you and your shattered heart in our hearts.

My deepest sympathies go to you and your family and to Kate.

So many things go through my mind when I hear sad news like today. Although Nick was leukemia free when he died, it is still because of the disease that he died..... and that makes me angry, sad and very very scared. I do know that each and every one of us is going to die and I know that it can happen for many different reasons and at any age, but - well, I don't like the fact that my eldest child has an elevated chance of it happening sooner because of this disease. This is also not quite accurate anymore what with Gleevec and the other meds and advances in treating cml....... but that does not really help much on days like this. 

There is a program on tv now with Niel Diamond and all his lovely old songs and it takes me back, waaaaay back, to days where everything was so simple, nothing could hurt us, we were invincible and well stuff like cancer just did not feature in our lives.  Oh how I miss those days on a day like today.

And earlier on this morning I went to see my doc (something really minor) and as I walked up to the building doors, I realized that I was only one arms length away from Steven's doctor - and his results!!  My heart actually skipped a beat.  Oh boy, you should have heard the high speed conversations - both sides - that went on in my head in a matter of seconds!  But, I walked past with only one small stumble... and a whole lot more temptation than I had been handed in many years.  When I came out again I knew that I had better be distracted or the temptation might just get too much, so I called my sister - thanks Katie!  And again I walked past that door less than 6 feet away.  

I have to leave this to Steven.  I have to.  I do have permission to get his results, but that would be undermining him, especially if I had got those results without asking him specifically.  And tomorrow he will be working with us again all day long..

I am SO incredibly fortunate.  Tears running down my face again for Nick and his family and I am worried about being able to control myself while I have my son all day long!?  It's difficult to try to understand why I am so broken up about someone I never met, but its real, its scary and I feel so much for his mom without even coming close to understanding her pain.

I think today's world has very little to do with understanding much of anything.... I think it's more and more about just living with every fiber that one has for as long as we can and then to just believe that there is something more afterwards....  Trying to understand seems to bring about more questions, more sadness and more unknowns and definitely does nothing for peace of mind at all.

Nick, may you dance in the freedom from pain and hospital rooms, may you see everything you still want to see and may you know how much you were and are loved by so many..... You are definitely missed, even by someone who never knew you.

A special dose of love and light to Nick's family and friends - and especially Diane.

Annie

I did it!

I did it............ success!  Not a word, not a hint..........  It was lovely having Steven with us all day, but boy it was long sometimes with those conversations in my head and the subtle taste of blood in my mouth as I literally bit my tongue later this afternoon....  but it feels so good to have succeeded...

Phew

love and light

Annie

Hanging in there........

No PCR results yet......

This time around I am leaving it up to Steven to call.  Up to now I have always jumped in there first, taking that away from him, keen to get those results as soon as possible.  This time I have decided to leave it in his hands.  Totally.  Aaaaarrrrggghhhh.  His doctor's appointment is mid August - I dont even know the exact date!  I will not ask him to call, will not remind him to call, will not even HINT that he should/could do either..  

The conversations in my head get very interesting at times..... time and time again a little voice almost convinces me that its ok to let slip in some 'innocent' way, to remind him to call, I have had very 'casual' conversations in my head with Laura, trying to find out if he will call or just wait till his appointment...... and so far, I have not yet given in.  One side of me would do anything to get those results and the other side will do anything plus more to be able to leave it up to him.   

He is working with us again tomorrow and its going to be a long day with much tongue and cheek biting to stop that question....but I am determined! Wish me luck!

Drop in on Nick and send him some good healing vibes and a note as well - he is fighting hard against many things right now and can do with all the well wishes possible - all of them can.

Have a great weekend

love and light

Annie

waiting thoughts and plans......

So PCR blood has been drawn for this test, it's been sent off and ...........well..... I am not 'freaky' at all. Yet. :) Steven's cbc came back as close to perfect as one can get and for some reason this PCR blood sample has traveled across country this time with hardly a thought from me. It's soooooooooooo good!

Steven looks great and his sense of humor is firmly in place and I realize just how much of a help this is to me - to see how good he is all round. It's like this picture, which is of the tip of a leaf of an insect eating plant.......... see how most of those little sticky bubbles stand by themselves? And then on the right, there are two sharing the load..... I see this so often in the close up photos I take. It's nature to give a helping hand and sometimes we need it when everything around us seems so right, so normal and there is no trauma around, sometimes it's right then that someone needs that sharing of the load..... Anyway - that was my thought as I found these sticky globs in my camera lens.

My one son in law is headed to Afghanistan in October, and the other son in law is heading off to boot camp mid September.... Oh boy, it's times like this that I am glad that Steven won't be joining the armed forces! Yes, that sounds selfish but he is already fighting a huge battle of his own - he deals with it every day and ........ well, I am glad he is not also in this branch of the armed forces! Hats off and great respect and love to both my sons headed that way. Be safe, guys! Stay strong, my girls - they will be back. Everyone has things and battles to overcome and each is no less important than the other....I notice this more and more in everyday life.

I think that planning a trip is about the best way for me to be able to push those pcr results, and other life issues, aside - for a while, at least....... and this time is no different. Maybe we should just plan a trip away for every pcr test done?! Well, this one is a major one and I am so excited that I can hardly sleep! We are off to the Galapagos Islands, the Amazon Jungle and Machu Picchu........... and we leave in the last week of September - a mere 6 weeks away.

At first I wanted to wait till Steven's results were in, but that would be letting cml rule my life in a way that I don't like. So, with a niggle that still won't go away, but a determination to live every moment of my life and not give this leukemia in my son more power over my life than it already has, we decided to go ahead and the final plans will be put into place and the booking done this week. Before those pcr results are in.

It can only be one of two things........ the pcr will come back higher or lower..... ok, ok - or the same, three options. Option number one = lower, and then my heart will be extra light again; option number two = same as last time, which is also great! and the last would be a jump in which case another pcr test will be drawn in a month's time and then a months waiting will put us right at the time we will be heading back home or already here. See? Calculations all done and neatly sorted.... now just to get my heart to listen!

No, I am sure it will come back just fine again this time....I never realize how much hope and energy goes into this belief, until those results hit my brain. The relief is always almost surprising, tremendously wonderful and very welcome. And I am going to believe that it's going to be this way again - no reason to think otherwise.

On a more serious note....... leukemia claimed yet another wonderful person, Michelle, this past week. She was only 27 years old and made such a huge difference in so many lives.... if you know someone who is not on the marrow registry, talk to them, tell them how important it is and send them to Michelle's blog - one of us really can save someone's life. Here is another young person, who even though critically ill, put herself out there to help others to live - and she succeeded too! Michelle, the world is definitely poorer without you here with us. Go well.

Love, light and hope

Annie

more hope.....

Data showing the ability of omacetaxine to kill leukemic stem cells in mouse models with drug-resistant chronic myelogenous leukemia (CML) are the subject of an advance online publication in the journalLeukemia, ChemGenex Pharmaceuticals Limited (ASX:CXS and NASDAQ:CXSP) has announced. The findings of this study provide new insights into the problem of minimal residual disease and may open the door to the development of a curative treatment strategy for some patients with CML.

Here is the rest of the article..http://www.medicalnewstoday.com/articles/144013.php

Thanks to Hans for the reminder about this article.... it's this progress that keeps me sane, keeps my life on an even keel....  

And then I find one of my pictures that really do inspire me as well.  Look at the barren-ness of the landscape around this tree - and its holding on and growing too!  We have so much hope for the cml-ers of today.  Just wonderful.  

It's easy to get scared at times with CML, it's not something that is totally controllable for ever, it's not something that once under control will always stay that way.  CML can do whatever it wants and we will all just have to adjust to that.  Again.  This is why the tests are done so regularly - to keep an eye on it so that we can catch it if it decides to mutate or take a different course.

Yes it's scary and yes it's cancer and sometimes I need to remind myself that all three my kids are exposed to all sorts of things that could harm them every day - all the nuts on the road, falling aircraft, other diseases, biting dogs and things like the swine flu.  

Thats when I really do 'get a grip' and count my blessings that our lives are not totally run by CML and that we do have the space in our minds to worry about, and enjoy, the normal things of every day life.  This takes time to get to and the first year was really the worst for me as I got used to having to stand back and wait and then to try to learn to control my worries and fears.  And again - we have been so fortunate that Steven's cml has not been giving us too much of a rocky road.  I really wish it were like this for everyone...  (you too Kelly and husband.)

I just know there is going to be a cure for this disease - it may entail encouraging my child to take arsenic or something else I cannot spell, it will entail being totally thrilled with test results in the below zero range.  I hold in my mind the picture of the celebrations that will be held world wide when this happens.  I also hold in my mind the pictures of many people who did not get the chance to hang around till that time - and they hold a special place.  They are the people who tried different drugs, were in the drug trials, who helped the scientists and doctors try new things or note the drugs that did not work under certain circumstances.  They are the people who opened the road to the cure.  Makes me quite tearful to think of just how much we all owe them.

love and light

Annie

Sometimes..........

Mostly I am pushing the barrow, but sometimes I am the one inside....  

These past two weeks I have found many things to write about.   Sometimes I want to rant and rave against all sorts of cancer and it literally hurts to read about the battles some people are going through, just fighting like hell to stay alive and have some quality of life.  Two that come to mind immediately are Michelle and Nick.....  Here are two young people who are good people, well liked and much loved, doing good things in their lives and whamo......nothing will ever be the same again.  Ever.  No matter what.  So much is stripped not only from them but from their families and friends.  I know it hits everyone really hard when someone is fighting like this for their lives, but I find myself identifying with the mom's of those with the cancer and I want to kick and scream against the unfairness of it all. 

There is absolutely no way that I can begin to feel or imagine what the mom's are going through, but I have to admit that at times just thinking about it squeezes my heart and soul and makes my eyes leak.   Most times I don't allow it to become too 'real' for me because that just opens a door that I have no need to go into.  A lovely lady, Lottie, once said to me that worry is like a rocking chair - it goes nowhere.  Well, I do my best to stay out of that rocking chair, allowing only short visits and making sure I don't get too comfortable there.  

About two years ago, I spent the night staring out of our kitchen window, looking at the crowds gathered at the funeral home just up the road, and then watching as they left again.  There lay a young man who was killed while in the Service in Afghanistan.  Someone had told me that his mom would not leave him there alone, so she stayed with him all night long.  I don't know why it got to me so deeply, but I stood there much of that night hurting for her so badly.  I made the mistake of almost trying to take on her pain, trying to feel what she was feeling and trying to make sense of it all.  I was scared that I would be in her shoes one day way too soon.  I know now that that is not my place and not a wise or smart thing to do.  There is no need for me to spend time in that rocking chair, but others do - and I really hate that.

Almost all the time I can, and do, see the positive side of things, especially after a day of having Steven work with us in the shop.  He is so easy to work with, full of life, jokes and fun and learning so well.  And CML really does not feature in those days any more.  Sure there are small moments, and mostly those are thankful moments, not one of worry or scared-ness.   

I think that what I am trying to say is that there are multiple ups and downs in each and every day, the downs are few and far between.  Sometimes it just does not seem to make sense to write all about them without it all seeming totally crazy.  

Sometimes I see a photograph that I have taken that helps me describe what I mean.....and this wheelbarrow does it.  Mostly I push that barrow that is life, I have the control over my feelings and thoughts. But a few times here and there, I am the one parked off inside letting life and all the things in it push me around.  But only very short times these days.

I am so incredibly grateful.  And I wish I had a magic wand for all those mom's that don't have the peace that I have.

Love and light

Annie

Peaceful, warm and a golden sunrise

And so I find myself relaxed, quiet and peaceful and playing with some of my photographs again.  This sunrise really sang to me today and I thought of Nick and Diane and family who are struggling really hard to fight off the effects of cml.  I wish them all the peace  and the quietness that this picture conjures, and then tons more.  

Love and light

Annie

African thunderstorm

http://www.youtube.com/watch?v=05ip-N0H1Ig (click on this link)

The beginning part especially of this is just incredible...... it makes me feel it from the soul.  Close your eyes and just listen and imagine that storm. 

Just listen - its awesome.

love and light

Annie

life and miracles..

I am in a good mood, very happy with my life right now and at the same time I am mad, angry and all upset.  The good mood is what is keeping the upper hand, right now, but every now and again the scary part of life pokes itself though like a hernia.  And then I wonder why I write about it - well, because it's part of my life, part of life with cancer in one of my kids and it's real. Also, if I write it, then it's a way of getting it out in a deeper sense, a sort of letting go and moving on.

  

So, what am I angry about? When I see Steven looking so well, with his life unfolding in front of him, his laughter, his joys, frustrations and his day to day stories and dreams, when I listen to all of this and cml is forgotten it's so good.  And then a simple comment that is made by millions, makes my hackles rise........ "I have lost two pounds, mom", says he with a smile and a totally unworried attitude.  I mean, what is the problem with that?  Well, my mind immediately scrolled through a hundred questions at the speed of light - how are you feeling? does your left side feel swollen, are you less hungry than before?  how...? is......? do....?.....  And cml is squarely back in the limelight.  Just for a moment.

Mostly it's gone in the blink of an eye again - but it's like someone blowing an enormous pink face-covering bubble gum bubble in room when it's least expected.  After it's all back in place, one wonders if it ever happened, and life moves on.  But it happened.

I get angry when I see other youngsters battling this disease and not having a good time of it at all.....  A bone marrow transplant is supposed to 'fix' it and yet I read of people battling other devastating issues created from the gvhd after the transplant.  This is not right, this is not fair and these are the things that make me angry - it should be us oldies getting this stuff, not the 'kids'!

Cml is not in my mind nearly as much as it used to be even a year ago, but there is no use in pretending that it's not there or that I am not keenly aware of how Steven looks and feels.  I really am very fortunate that he is doing so incredibly well and not a day goes by that I dont fervently hope that it continues.

The other side of the cml coin is that it has made me realize that life really is short, vulnerable and very precious.  I try to look at each day as a treasure - without getting too soppy about it, and each time I talk to or see my kids, grandkids, family or friends, I know that that might be the last and I try to make it better than it would have been without that thought.  I cannot say I always succeed - but heck, I try.  

Every day is a miracle that we are all able to be all we are and then tomorrow, today becomes a wonderful memory.  Maybe this is the miracle of living life - the Memory of the Miracle.

Enough rambling........ Big hugs to Diane and Nick...... I SO hope you are doing better tonight.

love and light

Annie

ps - the photo is of a grey whale with her newborn calf who visited us in Mexico - I just love the way they stick together...

Die, cml cells, die!!

A lethal cancer knocked down by one-two drug punch

Bar Harbor, Maine – In the battle against cancer, allies can come from unexpected sources. Research at The Jackson Laboratory has yielded a new approach to treating leukemia, one that targets leukemia-proliferating cells with drugs that are already on the market.

Jackson Adjunct Professor Shaoguang Li, M.D., Ph.D., who now has a laboratory at the University of Massachusetts Medical School in Worcester, led a research team that identified a gene involved with the inflammatory response that could hold the key to treating or even preventing chronic myeloid leukemia (CML), a lethal cancer.

In research published in the journal Nature Genetics, the researchers also showed that an asthma medication for human patients is an effective treatment for CML in mice.

The gene, Alox5, processes essential fatty acids to leukotrienes, which are important agents in the inflammatory response. But according to the researchers, Alox5 has a more sinister side. It is vital to the development and maintenance of cancer stem cells.

Cancer stem cells are slow-dividing cells that are thought to give rise to a variety of cancers, including leukemia, and to be critical for maintaining them. Researchers theorize that cancer stem cells must be targeted for effective treatment of many cancers, but direct evidence is still lacking.

The researchers found that CML did not develop in mice without Alox5 because of impaired function of leukemia stem cells. Also, Alox5 deficiency did not affect normal stem cell function, providing the first clear differentiation between normal and cancer stem cells.

Li also treated mice with CML with Zileuton, an asthma medication that inhibits the Alox5 inflammation pathway, as well imatinib, commonly known as Gleevec, the most effective current leukemia medication. Imatinib effectively treated CML, but Zileuton was more effective. The two drugs combined provided an even better therapeutic effect.

The Jackson Laboratory is seeking patent protection on the novel approach to treat CML that Li and colleagues have demonstrated.

The exact mechanism for the Alox5 gene in regulating the function of leukemia stem cells but not normal stem cells needs further study, but it appears that the two types of stem cells employ different pathways for self-renewal and differentiation. The findings provide a new focus of study into how leukemia stem cells are distinct from normal stem cells and how they can be targeted in cancer therapies. A future clinical trial targeting Alox5 will provide the first anti-stem cell strategy in cancer therapy. It is likely that other cancer stem cells will have specific pathways that also differentiate them from their normal stem cell counterparts.

###

Li conducted the research primarily at The Jackson Laboratory, with collaborators at UMass Medical Center and the Dana-Farber Cancer Institute at Harvard inBoston.

The Jackson Laboratory is an independent, nonprofit biomedical research institution based in Bar Harbor, Maine, with a facility in Sacramento, Calif. Its mission is to discover the genetic basis for preventing, treating and curing human diseases, and to enable research and education for the global biomedical community. The Laboratory is the world's source for more than 4,000 strains of genetically defined mice, is home of the mouse genome database and is an international hub for scientific courses, conferences, training and education.

 

The honeymooners are back!

Has it been two weeks already since Steven and Laura tied the knot?  Wow......  Thinking about that wonderful day still brings a smile to my face, and yes, I have spent endless happy hours sorting through the 13oo photos I took and printing many of them.  If you want to see more photos - go here:  http://s626.photobucket.com/albums/tt344/ibannie2/

 This day meant so much to me.... Seeing Laura walking down that pathway to join with the young man who could not take his eyes off her, was just incredible.  Yes, there were tears, but I did not want them to take over, so up came the camera and I clicked away all through the ceremony.  I have developed the knack of being able to see life happening while pointing the camera in the right direction, so I did not miss out on the moment nor limit myself to seeing it all through the lens only.  

The love and happiness and peace that both Steven and Laura exuded was lovely - it shone through their eyes, the way they held hands, the leaning in towards each other, the look in their eyes........  Their deep happiness was undeniable and totally wonderful.

And I only thought of cml once and that was when I thought that it was quite amazing that I had not thought of cml at all!  How's that?!  Looking at the photographs of me, I was really thrilled that my leukemia bracelet was not there with us all.... that it was still happily parked at home in a folder filled with other items from the previous 3 years.

Steven and Laura had a wonderful honeymoon - they went on a cruise to the West Caribbean and looked so relaxed and unstressed when they got back.  Now its all back to dealing with life without all the planning and promise of a lovely party and vacation ahead.  I laughed at Steven already cutting the lawn and fighting with the weedeater....   I bet that in some ways it already feels as if the past two weeks are fading into history.

Oh yes, they missed the flight to Miami for the honeymoon cruise, so we quickly got them another flight that got them to the boat with minutes to spare.... but then when they tried coming back again, they found that Delta had cancelled their return flight!  Apparently Delta cancelled the return leg because the first leg of the trip was unused.  That is just not right - they had that ticket fully paid for and had to buy new tickets to get back home.  They ended up on the same flight, at double the cost.  Something stinks and Delta is going to hear about it!

I really take my hat off to both these young people.  They love each other, stand by each other - no matter what!  Yes, there will be tough times, there have been already with the cml, but they just seem to get stronger and more determined to get ahead, to live, love and to enjoy.

In just a few months Laura starts night school in addition to her full day job and the challenges of fixing odd things around the house and garden start for the first time for them in their own home.

There are times since the wedding that I have felt a bit wobbly - tearful even.  Maybe it's because I am so incredibly grateful that the horrible feelings and fears I had just over three years ago are just not that intense anymore.  While printing and framing a couple of photos again today, I sent yet another set of deeply sincere thanks to Dr Druker.  Where would we be without all his work and dedication?  

This has been one truly beautiful year.  Baja trip, Steven and Laura buying a house and getting married, good pcr results, another grandbaby on the way and my youngest daughter moving back to TN.  Sadly this is because her husband is going to Afghanistan later this year, but we get her for about a year!

I am so grateful, so grateful for so many things....

Oh - and here's something else I am grateful for - Lea!  Go and read her latest blog on Glamour here.

It's quite amazing to me that even though cancer brings so much devastation it also brings out the most awesome people.  Any blog you read, you will find people responding, holding hands, encouraging or crying with someone...  It is honestly a whole new world.

Also, visit Diane's blog - I love her style of writing, she really nails those feelings on the head, makes one feel her pain and at the same time I find a chuckle bubbling out of me - she has a lovely way of making words jump to life.  Nick, her son, can definitely do with any and all extra thoughts, prayers and encouragement.    Diane also has some lovely music playing on her blog.

My life is so filled with wonderful people - thanks to each and every one of you!

love and light

Annie

Presenting Mr & Mrs K

 

What a totally awesome day!

Before the wedding.....

When Steven was first diagnosed I put on one of those bright red 'Relentless' bracelets that the Leukemia Society sells.  And it became so much a part of me that I hardly ever noticed it at all.  It faded gently from bright red to almost skin tone, blending in with everything I wear - kind of like cml did in our lives.  

But now that Steven's wedding is almost here, I started wondering about taking it off for the big day - not wanting to bring cml to this day in this manner.  It was Wednesday that I first thought of taking it off, but somehow it did not feel right and so it stayed.  During the day on Thursday my mind pondered the issue, but again it was not strong enough to do anything about it..

On Friday morning it gently broke apart and lay on the couch, finally off my arm.  The fear of leukemia has largely faded from where it was initially and now it wont be in all the pictures either, just as the color of the bracelet faded.

It's good.  It seems to me as if it was just not meant to be with me today..... good! 

What a day its going to be - I promise pictures - soon!

love and light

Annie

Pure giving...

I was sent this short clip in an email earlier this week..... and it's stuck with me - so now you get it too..

love and light

Annie 

Another Award for Dr Druker!

European Inventor of the Year 2009 in the category "Industry"

Chronic myelogenous leukaemia (CML) was long-considered one of the deadliest forms of cancer, capable of striking at any time, causing extreme pain and worse still, affecting both adults and young children. Before the work of two pioneering medical researchers, a diagnosis of CML and subsequent attempts at treatment guaranteed prolonged pain and no certainty of remission. But now with Glivec, a cancer fighting drug with a 98 percent remission rate, CML has lost much of its former bite thanks to American oncologist Brian Druker and Swiss medicinal chemist Jürg Zimmermann.

At a glance

Inventor(s): Jürg Zimmerman, Brian Druker

Invention: CML Treatment (marketed as Glivec)

Sector: Healthcare

Company: Novartis

In 1960, researchers identified an abnormally short chromosome in 95% of patients with CML, which they named the Philadelphia chromosome. Understanding the phenomenon of the Philadelphia chromosome was seen as the key to curing CML. After another 13 years of research, it was discovered that the Philadelphia chromosome is the result of two chromosomes swapping DNA.

By the early 1980s, researchers demonstrated that the DNA swap resulted in a fusion protein (the product of two genes or proteins joining together) called BCR-ABL. BCR-ABL causes the overproduction of white blood cells in the body. Where healthy blood contains 4,000 to 10,000 white cells per cubic millimetre, blood from a CML patient contains 10 to 25 times this amount.

In 1990, researchers began looking for BCR-ABL inhibitors and at Novartis, a phamaceutical company based in Switzerland, scientist developed a compound designed to reduce BCR-ABL. Jürg Zimmermann and his team set about improving the compound, eventually creating a potent and specific BCR-ABL inhibitor.

In 1994, Novartis teamed with Brian Druker and set about refining and readying the inhibitor for clinical trials that began in 1999. Today, the compound now known as Glivec is being hailed as something of a wonder drug. Follow-up data show that Glivec therapy helped 98% of patients in chronic-phase CML stabilise their blood counts.

Moreover, in 92 percent of cases, the Philadelphia chromosome was completely disabled, though still present. Patients treated with Glivec followed by a bone marrow transplant, a common course of treatment for CML, experienced a cure rate of 60-80%. Side effects of Glivec tend to be mild and easily manageable, with less than 5% of patients experiencing serious adverse effects.

Thanks to the Zimmermann-Druker partnership, the resources at powerhouses like Novartis and the tireless work of other medical researchers, it seems suddenly possible that a cure for cancer may indeed be found in our lifetime.

This is incredible hope!  I hold on to it every day even though Steven is doing so very well.  I am absolutely thrilled by Dr Druker's dedication to finding a cure for CML.  It humbles me tremendously to think that every hour he is thinking about or working on the cure, he is doing this for my kid.  I really don't know that there are enough ways to thank this man.

This was an perfect article for me to find and read today, on Mother's Day.  Apart from all the flowers, chocolates, cards and phone calls from my three chickens and others - this added that extra light.  

I hope all mothers had a wonderful day, felt treasured and loved and appreciated.  I certainly did.

love and light, 

Annie

Results and things....

Time flies and so many things are going on right now - all good.. but I am only getting to posting Steven's PCR results now - almost a week after they came in!  Amazing how time changes things.

This time the numbers are slightly higher.....and I don't know if it's because I have this eternal knowledge that he is going to be fine, or whether it's because it's really not a big deal, but I really did not become 'frilly' about it at all.  Even the wait for these results have been easier than all the others.

In January the numbers were 0.039% (0.14 IS) and this time they are 0.049% (0.18 IS).  

I actually expected the slight rise as I have seen that when Steven has been more stressed, his PCR has always hopped slightly upwards.  I might be imagining this, but it seems as if stress does have an effect. He has had buying a house, moving, their fast approaching wedding and honeymoon as well as a good amount of parting with many dollars over all of these things.

Most of us would definitely have stress over any one of these, so I am almost surprised that the numbers are not higher.  I am SO glad they are not, though.  Now is not the time at all to worry with the wedding just over a week away and a lovely cruise to enjoy.

I am so excited about their wedding - everything is in place and I just know the day is going to be totally wonderful.

Little Miss Laura is one lovely young lady, not just in her looks but her personality and determination to get ahead in life.  She has been accepted into nursing school and in the new school year will be going to night classes as well as holding a full time job.  Before Steven was diagnosed with cml I thought she was great - now I honestly feel that she is much, much better than great - she is one seriously special lady - and of course, a perfect match for Steven. :)  

Here is a young lady who fell in love with a young man - with an expectation of a good many carefree years ahead.  Right as they started getting really serious about each other the cml bomb dropped.  Did she run?  Nope. Did she hide or fall apart?  Nope.  She stood up and faced it all and incorporated it into her daily life.  I know that it's tough on her sometimes and I know that there are many times when its just easier for her not to think about the leukemia at all and go on 'as normal'.  But she deals with it as part of the bundle that is Steven.  She deals with it with grace, love and responsibility as well as a good dollop of humor.

Laura is such an incredible help to my peace of mind.  I know that she is right next to Steven in the treatment of the cml.  I know that she occasionally has to nudge him re his Gleevec and is supportive and understanding of the tiredness and other minor side effects Steven has.  Even though its got to be quite an adjustment and a constant reminder that their lives are not as carefree as any of their friends' lives, never will be, Laura is firm in her vision and determination of a good and full life together.   I wish I could explain just how deeply this impresses the heck out of me. 

I know that there are many people out there dealing with things much more critical than this cml in Steven, but - and this is a big but - this is "our drama" and Laura is the closest to it apart from Steven, of course.  And in my mind and heart I know that this is one really special young lady.  I can not imagine how it would have been with someone less supportive and conciencious

and willing to keep me informed, not only about Steven, but importantly - her own feelings on this.

I am obviously very proud of all my children and children-in-law, and am absolutely thrilled to soon be officially adding Laura to my brood.

Laura I love you, always will and I thank you deeply.

love and light

Annie

 

Many things learned....again.

So many things swirl through my mind and I wonder sometimes at the wisdom or need to write them down.  Many of these thoughts disappear into the days that are screaming past and other keep swirling around the back of my mind.  

First - this pcr waiting time has been so peaceful and smooth..... I have literally not worried much at all and even today when Steven went to the doc to get those results, I really did not even feel any hairs turning gray!  He will bring me the results on Saturday and I have decided not to call him and ask for the actual number - Saturday is close enough  :)  Sometime I have to turn it all over, and this is a good start.  

This past week I read about another person who died despite trying everything to get rid of cml.  It hurts.  Its scary.  I hate it.  And yet its reality and to shy away from it just does not help at all.. so I looked at it squarely and then flipped through Steven's folder of all his results, some of his recent photos and I felt better again.

I had a conversation with someone this past week where we were discussing natural healing of diseases, cancer included. After hearing that I was not willing to jump in boots and all without doing much more of my own research and get Steven doing what this person felt would cure him,  this person said that ' most caregivers would want to help the person they are caregiver to'.  Well, I know absolutely that this person did not mean it in a nasty, mean or derogatory way - but rather that they are very intense and excited about their discovery, belief and are perhaps frustrated at my lack of equal enthusiasm.  But it hurt.  Of course I want what is best for Steven, but I am not ready to try to get him to try something without first finding out all angles about it.  I know enough to realize that different diseases react differently to even natural products........... and, well now I feel as if I am defending myself again, but thats what that comment did to me.. made me justify why I was not getting Steven "to be healed".  Sigh. 

I am not really a caregiver to Steven - he really does not need one but I do keep tabs on everything for him and share the stuff that I know is relevant or helpful.  Does not sharing this 'natural healing' information make me less concerned or something? I don't think so, but it does niggle in my mind.

Today I also got a serious lesson is the absolute necessity of getting copies of medical records as the results come in as well as being 110% informed about results and what tests are done.  I had gone for some basic testing a few weeks ago, got the response of  "all clear" and had I been one of the majority of people today, I would have left it right there.  Not only was the 'all clear' not correct (nothing serious at all), but I was not given the option of taking meds for the minor problem and only discovered this information when visiting a different doctor today. Talk about an instant 'blood boil" 

If this had happened to me three years ago, I would not have done anything about it.  I would have just been quietly angry and moved right on, probably changing doctors, again, and losing even more faith in the medical world.  But I did not do this this time, having learned so much since Steven's diagnosis, I headed to the other doctors office and voiced my anger to both the doctor and her nurse.  I must say that I was really pleasantly surprised at their response and will stay with them.  I know that the communication problem was not on purpose and it definitely did not seem to be pure negligence as I had heard only good about them before going there and felt totally comfortable with them both.  I understand that life happens and sometimes things come together to create a mess like it did with my results.  But happen it did.

I do believe that because I went down to talk to them that this will help prevent it happening again and I seriously believe that we should all be very comfortable in doing this when we are unhappy with something our doctor says or does.  How else will these people that we entrust our lives with, know how we are feeling?  With all due respect to the years of learning they have done, they are first and foremost people, and that makes them just as vulnerable to making mistakes as we all are.

So go on - if you are not happy with something your doctor says or does, or how long they make you wait or the lack of communication - talk to them!  Your life might depend on it.   

This brings me to another thought.... Lets say that I had not asked for more details on my test results, lets pretend that I had been happy with that 'all clear' and lets pretend that there really was something serious going on that I was not told about.  Who would be to blame when the serious stuff hit under these circumstances?

Seriously.....think about it.  I am in charge of my life.  I would be totally stupid to give all that power to someone who hardly knows me, someone who sees a constant stream of people all day long and who would probably not recognize me in the grocery store, someone who cannot possibly be expected to care about all their patients as I care about myself.  How could I place full blame on someone else  in those circumstances if I had not cared enough about myself to make sure I am ok and to see and understand my own results?  

Keep up with your tests and results and get a copy of them all.  And encourage someone else to do so too.  It can save a life!

All in all today alone I was given three pieces of information that I should have had prior to this visit.  Some of this information was from 2005 and a different doctor and some went even further back than this...  In my case I was very fortunate - I don't have anything serious going on at all, but how many others are walking around with the 'all clear' bell ringing happily in their ears while stuff is going wrong with them?  

Although this sounds like a bad day - it really has been a fantastic one.  I re-learned valuable lessons, gained a bit of belief in the medical profession, gained more trust in myself and Steven's results are good again!!  

What a day....... :)

love and light

Annie

Pretty normal....

Over that past few days and even weeks, I have noticed that life has smoothed out.  It surprises even me to think that we are now well into the PCR result waiting period and it hardly crosses my mind!  I never ever thought this was possible.  I know - give me another week or so of waiting and the wobbles will start again - but they are so much smaller and less intense than they have ever been. 

I  sit here today with relatively no worries re Steven's cml at all.  Not that I don't worry, it's just that it is much more in perspective these days.  When I talk to him on the phone I cannot help but do that 'robo-scan' thing, and at times when he sounds tired to me, I have to remind myself that above all, high above everything, this child of mine is normal.  He has normal stresses, normal late nights, normal long working hours and has the normal right to be tired, behave accordingly and need extra rest.  

So I am now in a training period of my life - I try to look at all of this in a clearer way.  There is nothing I can do, no amount of worrying or biting nails will change anything at all.  I keep up with what is going on in the cml world of progress, the new meds and things, but from a personal stand point - I just have to let it go the best I can.  And it's easy right now.

Steven is doing well on all fronts and he and Laura will be here again for dinner tomorrow night which will further put my mind at peace.  Oh I just KNOW that I am going to make a fool of myself at their wedding with my tears!  The camera has a full warranty so at least I don't need to worry about soaking that. :)   

Yes, in many ways Steven getting married brings stronger emotions than what I had when my girls each got married.  Unfortunately I was not able to let my worry and sadness and scareds go long enough to get fully emotionally involved with either their big days.  Lisa's wedding was within the first six months of the diagnosis.  It was held locally and Steven was there too - I remember looking at them standing together and just wanting to sit down and cry - thank goodness I could put the camera between me and facing it all right then.  

Of course I was happy for both Joleen and Lisa, excited and pleased that they had found their someone special, but I know I was not this deeply emotional about it - I did not know how to divide my mind at that time.  They are both special and very understanding young ladies and understand where I was back then.

It's going to be totally thrilling having all three of them together this time.....oh those photos that will be born!

And so I see that my mind wanders further and further from cml and onto the big and small things in life that keep life rolling on regardless of cml.  Is this the new normal?  I like it.

love and light

Annie

ps.  The gull just looked so happy, bright, expectant of good things and as if it is dancing on the currents of the wind.......

this is just beautiful....

http://www.youtube.com/watch?v=wnmbJzH93NU

Something is happening these days - more things make me cry. A happy cry.  It's when I see something awesome like this lady singing or a stunning photo or hear a story of love or caring, when I read a story of courage of hope - those things make me cry.  And it feels like pressure being let off and it seems as if it's helping keep my life on an even keel.

I find myself looking for these happy stories, the good things and the beautiful things in life, and after just one episode of watching only bad on the news, I am thrilled that there are still so many glorious things out there.

Back to the singing lady - she just made my week!

love and light

Annie

Inconvenient emotion

Oh, there is SO much good, so much happiness and so much to be thankful for.  Laura's wedding shower, a friend of my daughters wedding, Steven and Laura's new house, good pcr results, good cbc results, summer arriving, fruit trees blooming and on and on - beautifully so.  So why do I end up on my haunches in the middle of the card isle of Walmart creating puddles on the floor with my tears?

I went there with a happy purpose - two of them - to pick out a wedding shower card for Laura and a wedding card for a friend.......so being sad was the furtherest things from my mind.  These days have been good on all levels and especially seeing so many wonderful things going on in Steven's life.  And then I found just the right the card for Laura - it said just what I wanted it to.  And while I was reading it again for the second time with a smile in my heart and on my face, its wording reduced me, with no warning at all, to unstoppable tears.  It said:   "Forecasting showers of happiness.........(and inside) followed by a lifetime of love!"  And the tears flowed in a very inconvenient shower of emotion.

I know that Steven has a good full life ahead of him. I know that he is doing well.  I know that the Gleevec is doing its job.  I know that even if Gleevec stops working that there are other meds out there that will pick up the slack and get him back on track.  I know this deep down as well as right in front of me.  But - those tears would not stop.  I dont even know what it was that got them going.  One minute I was all happy and excited and really enjoying looking for cards and seeing the hope and continuance of life in the marriage of these young adults.......and then bam!  The punch was hard, well aimed and took my breath away......and then I was ok again.  It was as if something just clicked into place, I took a deep breath, the tears stopped and on I went.  God, I am so grateful for being able to do that - to be able to move on again, to know that for now my son is fine - as are my daughters.

Do I feel sorry for Steven?  No, I don't feel sorry for him.  If I did, that would be attaching something negative onto him when it is really not necessary.  Of course I am sorry that he has leukemia and that he has this extra burden to carry with him through his life.....  But when I look at the struggles of others, I know that life really is very very good.

Laura's wedding shower was lovely and the wedding I went to the next day had me very grateful that I could look at it all through the camera lens, shielding myself from some emotions.  Weddings make me cry and I just know that I am going to waste my time by putting on any make up for Steven and Laura's wedding!

Steven had his cbc and PCR drawn last week Thursday. The cbc came back all in the normal range and we are back in that waiting time for the PCR results.  No worries yet, no frillies yet.  Still a way to go and to be honest, I have not thought much about it. Not too long ago cml was like a river in the back of my mind at all times, always being heard, always running.  What a lovely discovery recently when I realized that nowadays cml pops in through a window in my mind, not often staying too long at all and much more of a stream than a river.  I am so thankful on so many levels. 

Hans wrote a lovely blog the other day - he describes cml so incredibly well...... The Black Koi...  I loved it, Hans!

It's lovely to see summer blooming again, the fruit trees are beautiful, they are laden with tiny new fruit, promising an enormous amount of fruit. The grass is growing at a speed that beats the lawnmower and after a mere two weeks, provides a jungle for the doglets.  Little birds are hatching in all the bird houses we have dotted all around the house and it's light in the morning when I wake up.....  All absolutely awesome.  

love and light

Annie

Beautiful!

My three chickens.  The pride and joy of my life.  U3 are just awesome and I love you more.

love and light

Mom

Balancing act..

And so yet another PCR screams up on us.  Are there only four in a year or is that the years are whizzing by so fast that they just seem to be piling up like ice on the frozen shore?  It just seems that every time I turn around, it's again time to order that box of goodies.  And then that wait.

It's a balancing act.  All of life is, but when a kid has cancer, it has a bit more of a sharp edge to it.  So like this dew drop on a tiny leaf, I feel as if life is tilting just a little again.  No big problem, no freaking, just a little tilt until we get those results that are going to be great, or even better, again.

In the meantime - Steven and Laura close on their house tomorrow and start moving in right away!  Wow - what it must be to buy a house at that age... I was much much older before having that opportunity.  It's totally wonderful to see him so excited, the boxes piled up in their apartment and ........just to think that one point I wondered if he would ever be able to do any of this - somehow that makes all this so much more special.  Right now they live literally  down the same road as we are on and many days I see him coming around the corner on his way home or leaving - always made me smile.  I really am going to miss that.  But I am so happy for them both.  And their wedding is only weeks away now too...

So, even with the little tilt, I am one really happy, blessed and fortunate mama....

love and light

Annie

Adrian's Legacy gets teeth!

Oh wow - this is awesome....... Remember Adrian from Baldy's Blog?  Well, these two video's below are of the most inspiring, strengthening and touching videos I have watched in a good long while.  Adrian so wanted to make a really big difference and.......... well, there is so much I could say, but it would definitely pale by comparison to what is said and shown in these short spots.... Please watch them.  

 

You can also click the title of this blog and it will take you to the Anthony Nolan Trust site for the "Register and be a Lifesaver" campaign that Kay sent me.

The strength and determination of Kay, Keith and Carrie and so many others, to keep Adrian's work going, is just beautiful...  There really are few things more awesome than people working together to really make a difference in such a beautiful way.  My deep, deep thanks go to everyone who keeps on going, keeps on making the world a better place, one donor at a time.

Kay - you guys are just amazing.

Love and light

Annie

Two years ago.....

Two years ago, this little sprite, my youngest grand daughter arrived to brighten our days... and she has done her job really well.  She is a pure delight, gorgeous, cute and just plain beautiful too......  Happy Birthday, McKenzie!

And tonight at her party her sisters, some friends and  family gathered together to celebrate her life I again realized how incredibly fortunate I am on so many levels.  

My mom came along with us which gave us a beautiful opportunity to get a few photos of four generations of girls! There are too few times these days that this sort of get together happens and we all took full advantage of it.  

And I watched as Steven and Laura arrived, eliciting screams of joy from the little girls who all rushed across for hugs from Uncle Steven and Aunty Laura.

And I was humbled by the oh so very deep feeling of thankfulness that Steven is doing so well.  I watched as he hugged Lisa and greeted everyone else, I watched that easy smile and laugh and Laura standing there right with him and I thanked everything that could be thanked.  And then did so again.

I remember the feelings of terror of three years ago when I wanted to cry at Lisa's wedding, not yet quite believing that he would be ok, that he would be around to be an uncle or that we would have these happy gatherings.  And so today I thanked all and everything that could be thanked again and settled into a lovely evening of celebrating so many things.

Cml is not foremost in my mind at all - but it's definitely there.  Steven works with us on Saturdays now which is wonderful.  I get to spend some time with this lovely young man, its good to see how quickly he is learning, but I also get to 'mama scan' him over a good few hours. And I have to admit that cml only enters my mind a few times during the days spent with him and it's definitely not a gut wrenching feeling anymore - rather, it's a feeling of being content with the way things are now and a wish that they stay in such a good place .  Nice :)

Here are some people that need you to send them good thoughts and prayers too......  

"Big D"  http://dancindianern.blogspot.com/ is another mom who's son, Nick, is going through some intense treatments right now - she has an incredible way of writing and sharing her feelings and fears, wishes and thoughts. 

"CC"  http://www.ccsjourney.blogspot.com/ She has just started heavy duty treatment for ALL.  She started off with CML and it moved on to ALL.  

Tyler http://bledsoebattle.blogspot.com is doing very well is is an inspiration for others on the transplant road! Keep going, Tyler and Mandy!  I follow you regularly and look forward to your 100 day mark and then the 1 year anniversary..... :)

Hans,  http://ftbwtw.spaces.live.com/blog/ Not only is he dealing with a fairly new cml diagnosis but they have just had a brand new addition in their family - Congrats to you all!

And Matt  http://hatefulblood.blogspot.com/  Another one responding well to Gleevec and just got wonderful 'greater than 3log reduction" results!  Awesome news.... 

So - cml is very much in my mind and I do spend a good amount of time still either reading the blogs of others, hoping and wishing for good news and then sporting happy smiles when that happens.  Others that are not doing so well, tug at my soul and help me balance my emotions and keep me in touch with reality, encouraging me to stay aware, awake and alert to this disease Steven has.

But I am also learning the importance of spreading my emotions a bit more evenly these days.  I am learning to really enjoy being involved, fully involved in things that have nothing to do with cml.  I am learning to look at daily happenings and just appreciate them for what they are and not see them tinged with leukemia.  It's a long process, but I know that I am really fortunate.  I think that slowly 'letting go' of the fear and just living for today is the best I can do.

It's only weeks before Steven and Laura move into their own house, and then just a few weeks later their wedding and the wonderful sounding honeymoon vacation.  So much good happening - so much that is so good.

So much to be thankful for.

love and light

Annie

Three years!

It's amazing what a difference three years have made......   This past week was that very dark week from hell for all of us three years ago when we first heard that Steven had leukemia, and on Friday 6th March 2009, it was the three year mark of the cml diagnosis. 

The first year I bought a cake - not quite sure what the heck I was doing or whether I was celebrating one year more of life or just trying to find a reason not to let the tears flow - one cannot cry with a cake in front of you!  The second year we had Steven and Laura over for supper and spoke mostly of other things, but gave cml a short "shot in the sun" with a toast to a good and happy and healthy two years, even though cml was in the front of my mind.  This year, the three year mark, we ambled back into town after a wonderful 6 weeks traveling through Baja Mexico, had pizza with Steven and Laura and cml barely featured at all, even in my mind!

We celebrated that this past week for them had been full of sending out invitations for their fast approaching wedding in May - it was also a fairly nervous week, but not because of cml, but because they had put an offer in on a house!  And two days before his diagnosis anniversary, the offer was accepted!  They are buying a house......... 

In three 'short' years, this child of mine has truly become a man.  Not because he is buying a house, not because he is getting married, not because he has leukemia - but because of how he has taken it all in his stride and bettered his life and his outlook despite, and probably because of his diagnosis - and, of course, because of  the lovely lady Laura!

It's been quite a ride, these three years.  The people we have met, the love and encouragement we have been given and the growth that has happened in so many ways.  

When we were first planning this trip away, I purposefully planned that we would be gone before his last pcr results came back in..... and it worked very well.  I know that nothing I can do will change what that result shows us and it was my way of actually living that knowledge.  Steven does this every day by getting on with all aspects of his life, doing everything he should and would be doing despite his diagnosis.

When I heard that his offer on the house had been accepted and I realized the timing of it, I cried a little.  Just a little - but it was a happy cry, one of wonder and thanks and appreciation and pride in these two young people who are moving on with their lives.  

What a difference three years have made in all of us..  and I am incredibly grateful and am so enjoying the peace in our lives right now.

love and light

Annie

Great Results - again!

Yes, yes, yes!

The results are great! 0.014%

I wrote so much stuff, as normal, and it all got lost when the internet connection dropped...  So let me just say that I am SO happy that this result is so stable, that Steven is dealing with it so well and that I can also relax and enjoy the trip ahead of us.....

Steven - Great stuff!  I hope you get over your cold/flu soon too!

Tyler and Mandy - I will check in as I can - may your news only get better and better!  :)

I will update mostly on the travel blog until we get back home sometime in March.

Steven - you are great!

love and light

Annie

seeking sunshine......

On Tuesday we are leaving home for about 6 weeks or so.....  It's cold in Tennessee, Steven is doing well and there is more than enough sunshine in Baja to share with us and the camera's are itching to show what they can do with beaches, whales, sunshine and open roads again.  So, we are heading that way.

Steven has his appointment on Thursday and hopefully his PCR results will be in by then too.  He promised that he would call me and let me know - Yes, you did, Steven!  :)  Actually, I threatened to turn around and beat it out of him if he doesn't......  And then I won't be a happy chappy - especially looking at the weather channel for next week.

Anyway - we are almost packed up, have already closed the shop and are really keen to get going.  It was up to me to decide when to leave and I purposefully put the departure date before Steven's PCR results come in.  I thought I might call on Monday to find out if they are in but then that would defeat the point of leaving early.  I really need to stand back a bit.  I know that Steven is quite capable and with Laura right there with him, I know that all will be just fine!  So I won't be calling for the results, but will wait for Steven to call and let me know.

No -I don't have any nails left.  But fortunately they grow back quickly.

This week also brought a simply beautiful email from Hans, a newly diagnosed guy with cml.  That was really very special, Hans - thank you!   He has such a good attitude towards his cml journey and I wish him only good test results and few side effects and many, many smiles :)

Also please keep all positive thoughts going for Tyler and Mandy - his transplant is Tuesday afternoon!  I will be thinking of you both as we trundle down the road...... may it go smoothly and with as few potholes in the road as possible.  Hats off to Dad the Donor too  :)

If you want to follow our travels - feel free to visit the link on the right - or click here to go to the blog I have put together just for this adventure.

Love and light

Annie

life

Peace and quiet, cold winter sky, reflections, growth and death, hope and color, differences and same-ness...... all in a picture. Life.

Life is a song ... sing it.
Life is a game ... play it.
Life is a challenge ... meet it.
Life is a dream ... realize it.
Life is a sacrifice ... offer it.
Life is love ... enjoy it.

One more.......

Ok - so I am certifiably insane now - two hours in the snow and wind, crouching over a birdbath that had a dark jacket over it to get a bit of height and the contrast effect.  My fingers, nose, teeth and toes all froze.  But look what I got!  :)

It even has a design in the very center of the flake.  It was truly an awesome couple of hours and quite fascinating just where my mind goes when I am so involved in this stuff that one normally cannot see.

A lovely day.

Love and light

Annie

Unique......

Talk about determination and hope and making any of my problems absolutely minor.......... watch this youtube video - I cant help but tearing up when I do and then thinking about everything with a deeper commitment to be more grateful for what I have.......

http://www.guzer.com/videos/are-you-going-to-finish-strong.php

And - along those lines... I know that every person, every situation is totally unique. Here are a few photos that I took of snowflakes earlier this week.  To me, its awesome to see how unique, special each and every one of them is.  Sadly, they start melting even before they hit the ground, or the tub of ice that I have prepared for them.  The snowflake lasts longer if it lands on ice and gives an interesting effect too...... I will post more sometime.

And when I see how incredibly fine and beautiful these individual flakes are, how far they have travelled and how they literally disappear in seconds, right in front of my eyes..... it makes me think of life.  The flakes I capture with the camera can always be looked at, wondered and admired and even mourned for disappearing - but it happened, I saw it, I admired it and wondered at its beauty.  It enriched my life, made me see things clearer and brought home to me just how delicate, precious and awesome life is.

People are like this - once we have known them, they will always be part of our lives, our souls and who we are.  Even if they die too young or way too soon - nothing can take their time away from you.  Even a stillborn baby affects that mom for life - it did for me.  And so a snowflake makes me think of people like Adrian and Dawn and so many others....... they were here, they impacted our lives, they got up!  (See video in the beginning of this post), they showed us how.  They are awesome.

They also make me think of people like Shane and Lea and Tyler and Hans and Steven and so many others that are also incredibly special, landing on the ice of life that is keeping them around longer.  

There is not a day that goes by that I am not incredibly grateful for the people in my life - the love and the light and the laughter and the life shown by so many people with issues way, way bigger than mine........... Thank you!

Love and light

Annie

Goodbye Dawn....

This is Dawn.  A beautiful young lady, bright, energetic, loving and so incredibly full of life.  She made a difference in so many people over many years, and deeply so this past year.  Her blog is brimming over with people who's life she has changed in some way or another..... go and read it - it's truly humbling.  http://www.goshdawnit.com/.

Today she died.   Leukemia was just too strong, too out of control and her body could just not take it any more.  

This breaks my heart to see yet another beautiful person taken by this disease. It sucks! I know there is nothing fair in life, nothing promised and nothing sure......but geez!  Look at her!  She fought so hard against leukemia, always with a smile and a glint in her eye.  I am so sad that she did not get better.  So sad.  My deepest condolences to all her family and friends - she is going to be sorely missed.

This also brings much closer to home the monster we are dealing with.  The fact that I have it so incredibly easy by comparison, what with Steven doing so well makes me tremendously grateful.  This is just one of the ripples that will forever flow from Dawn's life and affect mine.

Yesterday Steven's PCR kit arrived from Oregon and I noticed that my 'bitch factor' increased a fair bit as soon as that box landed on my desk.  I fight so hard against worrying, I don't want to worry and I know it changes nothing at all.  But it happens.  So I looked at it once more, and I am going to try not to give worry too much time this time.  Again.  

Last night when Steven came to pick up the kit, I found myself burbling out the instructions - again.  He gently said "I know, mom" and I was able to zip it up.  He does know, and he does it right every time, yet every time I find myself telling him again.  Aaaaaarggghhhh!  But, as I said to him today - one day he will have kids and then he will understand why I worry about things like I do.  He just looked at me with a smile in his eyes and said not to worry about it.  I cannot express to him enough my thanks that he deals with both the leukemia and me in such an incredible way..... 

He had his CBC today as well and I have to share them here.........they are almost perfect!

WBC 5.8  

LY 22.9

MO 6.6

GR 70.5

LY# 1.3

MO# 0.4

GR# 4.1

RBC 4.09

HGB 13.3

HCT 38.9

MCV 95.2

MCH 32.6

MCHC 34.3

RDW 13.4

PLT 255.0

MPV 6.3   This is the only one that is slightly low, and only very slightly at that.  It feels so good to type all these numbers and they are all good!  PCR numbers next, please!  :)

Steven also looked so relaxed, at ease, happy and well..............totally ok today!  And I realized again just how much my 'relaxedness' depends on him doing well.  I hope that he never feels that he must protect me from how he is feeling regarding the cml, and I know that he relaxes when I am relaxed too.

And I am,  really I am.  Even with the utter tragedy of the world losing Dawn today, I am relaxed with my life.  I know I cannot change this in his life and I cannot change the effects it has in mine.  The only thing I can change is how we deal with it...... Oh how I am now laughing!  I think if I go back three months and the three months before that - before each and every pcr test I type the same sort of stuff.  Ok - so this time I will try even harder.

And to show how confident I am - and no, I am NOT daring the Universe! - we have planned a vacation, leaving here at the end of January.  We are driving across country, we will stop off to visit my daughter Joleen and her husband at the Marine Base in Twentynine Palms in the California desert, and then down to Baja Sur....  We are hoping to spend a good month away this time - much of it on the beaches in tropical temperatures down in the south end of Baja.  The whales will be there, the turtles hatching, the sun will be shining and the beaches filled with shells.  My camera's are dancing already!

This is how I need to live my life.  If I sit and worry and not live for fear of what might happen, what would I be doing to my children?  What message would I be giving them?  Yes it hurts when leukemia claims another life and it grabs me by the throat and makes me angry and sad, but it also drills into me deeper the need to really live life as well as I can.  And in this way maybe I will instill the same determination into my three kids - whether they live to only 60 years old or all the way to 90!  May they see that if their 'old ma' can do this, they can too.

To Dawn's family.  The news today was devastating - I had so many hopes that Dawn would be 

up and about and flashing that smile around again.  I hope you know that the ripples she sent out have already affected my life and through that, the lives of others that I share my growth with.  Thank you.  I am deeply sad for you all.

Love and light

Annie

Make the year a little brighter....

This picture made me think about how life is.  It's full of reflection, chaos in places and calm and quiet in others.  There are parts in sunshine and others in deep shadow.  There are reactions to actions that we often don't see without looking carefully and closely and so often this all happens in the short time it takes to throw a handful of stones - only seconds. And once the water calms down again, it will look all the same - but its not.  There are a few more heavy stones in this pond.   This is life.

Something really touched my heart and soul recently....... You know how Christmas and the new year makes us thankful for so much, pleased that we got through another year and also brings to mind the too many people that are no longer with us?  Well..... I know that the support boards and the people who walked with me through the first years of Steven's diagnosis literally saved my sanity.   A good few of them are firm friends now but even those that have moved on, like I have in so many ways, and with whom I don't have regular contact, well, they were and always will be a very big part of my life and who I am now.

So, what happens when you have lots and lots of contact, help, handholding, support from the boards and then the person you are caring for passes away?  Not only does one lose that person, but the support - your 'other life' - disappears too!  This is what happened recently...  I had emailed someone who had lost her husband to leukemia not too long ago and she mentioned that I was the first CML friend that she had heard from in ages!  That really made me sad.  Not angry at all - just sad. 

People that have lost someone, don't need to lose more than they already have, it won't upset them to hear from the people who were there before that person died, they want to hear that others still think of the person that has gone, they need the contact - they need to taper off from the contact like we all do in some way.   I know that if all that help, the support and the love shown to me from so many people just stopped, I know that that would be like losing even more.  The emptiness must be big enough without this loss too.

I don't know that I am saying it right - but I do think that maybe we should all just keep in contact with those that we got to know so well through common fear and hope, just that little bit longer, until they are ready to let go and move on.  Maybe??  

Maybe now is a good time to email someone of last year that lost someone - to wish them a gentle year and to let you know that you still think of them and the person they lost.  Email, call or write to someone that you have been in contact with before, someone that helped you or who you were there to support - tell them what it meant or means - let them know they still count, even if you don't have regular contact.

Sometimes it's not easy to talk to someone who has lost someone they love.  It's not easy to know what to say and we are scared of hurting them or making them cry.  But I don't think that letting them know something you remember, letting them know you still care, laughing at a common memory or even sharing a pain - remembering the person that has died, I don't think this would hurt that person.  I think not contacting would hurt more.   Not talking about the person that has died, makes them 'more gone' if thats possible and makes one more isolated in the pain of getting through the many 'firsts' of the new life without them.

Sadly, we all know someone that can do with this type of contact.... lets make this year a little brighter...

with love and light

and thanks - so many thanks!

Annie

Ending the year right.......

This past year has made me more aware of so many things.  These past few years since Steven was diagnosed with cml, have done this.  It's hard to believe that in a mere two months and some change, we would have been on this cml road for three years already!  It's amazing how many important things I have learned about life in such a short space of time.  It's weird how emotional I have become - although I know it's probably got something to do with my age too.......but lets not go there now  :)  It's a good emotional though - it does not floor me, does not bring me down, but helps me keep the important things in life, in focus and is ok as long as the box of tissues is close by!

I want to let 2008 go with some really important thoughts and ideals to keep me going into the new year.....a year that I just insist is going to be a really great one.

Here is a video of a  young lady recovering from her bone marrow transplant - quite an incredible lady and her family.  Yup - I cried watching this.  Tears of hope and sadness too that they had to go through this.  But look at everything they have achieved!  Michelle and her family is amazing.  Anyone in her area - join the registry!

http://www.youtube.com/watch?v=CGhAlICpU60.

And here is another trial for the cure of cml, the killing of the sleeper cells, and a talk by cml specialist, Dr Ravi Bhatia.  Here he explains why he believes that cml is not cured by Gleevec, Nilotinib or Dasatinib.  It's interesting 

and so positive.  It's just awesome to listen to these amazing people.  These doctors and scientists who are working so hard to find a cure, or to figure out cml - they are hero's, my hero's!

http://www.patientpower.info/dailydosedetails.asp?dateid=2008-12-17.

And Adrian - If you have not read his blog - do so!  He was an incredible inspiration to people all over the world - still is....  He changed things, big things and really made a difference in this world.  Adrian's Army and his parents, Kay and Keith are keeping his work going - see if you can get involved in some way.  

Lea has fought against cml hard and is now a year past transplant and went skiing this vacation!  It's fantastic that she has shared her journey with everyone - it really gives me hope and there is absolutely nothing like reading such an incredible success story!  Both her and Shane, another transplantee, hardly ever update their blogs anymore which is absolutely wonderful - no news is definitely good news in both cases and its so right that they get on with living their lives and have less and less to write about regarding cml.  It's stories like these that have literally lit up my life this past year.

Little Bianca and her family had to adjust the celebrating of Christmas because of treatments and are in a small bump in the road right now, but they keep on sharing smiles and the good things in life - where do these people get the strength from?

And Dawn - oh boy, she is fighting so flipping hard right now.  Go to her site - donate blood, get on the registry, send her and Mike and their families a message - I want so badly for her to be ok!

Oh there are too many that are not around to see this year come to an end, too many. But each one has left so many with so muc

h love and energy, the will to do something to change life for others and a new depth of character that can only come from a really deep worry and pain.

There are so many people that I watch and follow on their determined walk with cancer  - and they have taught me so much.  Somehow this past year seems more intense and filled with depth than the year before.

I wish for everyone that this coming year is one where we can all make a difference.  Sometimes we think it has to be something big - but that's not the case.  A note, a flower, a smile or just listening without interrupting can make all the difference in someone's life.  Think of something and just go ahead and enjoy doing it!  Be a light to or for someone.......... even if it is for just a minute...

In many ways I am happy to leave this year behind me, but then I think of those that won't be in the new year and I don't know if I am ready for another year yet, don't know that I am ready to let the year go and start a new one.  But - there is no option, as we all know.........so.....

May this be a good year, a positive year, a year filed with an extra dose of love and warmth and the opportunity to make a difference somewhere, somehow.

And thanks, so many thanks......

love and light

Annie

Christmas thoughts....

The best thing about Christmas for me is that it gives us another chance to get together, to let those close to us know that we love them and to do something special for others.  And so it was again this year.  Hours filled with hugs, smiles, caring and laughter.  It's not in the gifts at all - its in the caring and the care taken and the light in the kids eyes and the magic.  

It's in the love........it's in the magic of a tree all lit up in a darkened room, in the nail biting of the excited little girls as they waited for the gifts to be handed out.... It's in the wonder.

For me, Christmas is the end of the year in so many ways.....it's when I think about the year that is past, the so many good things that have happened, the special people and the incredible amount of love that has been spread around in another year...  I think about the people that are struggling with the loss of their friends and family and those still struggling to hang in there - even they give so much love.  It's just amazing how it sometimes seems that those hurting the most, those struggling the most or those that have lost the most seem to be able to comfort and deal out love in incredible doses.

And these days I find that I cry at everything!  I cry at a good story, at a sad story, a happy ending, at the end of a good evening and sometimes just because.....  Maybe I should just sit and howl it all out - think that feeling would go away?  Hmmmmm

2009.  What do I want for 2009?   I don't know that I can answer that question right now.  I want so much for so many, but how to put that all in words...... I have learned to be very careful about what I ask for so I think I will just let this one lay there for a while before I put it in actual words.

Health - may you all have the best possible health.  And Dawn and Tyler - so many special, special wishes and hopes and thoughts heading your way.

Love and light

Annie

it's time.....

Bye Bye RoadrunnersUSA.com

Today was sort of sad in a way, but also the right thing and the right timing.  Today I decided to let go the website I put together right after Steven was diagnosed.  We did this fundraiser - somewhere around 11 000 miles from Tennessee to Alaska and back, to try to raise money for the Leukemia and Lymphoma Society.  We had an incredible time, the people we met are still embedded deeply in my heart and its a trip I will never forget for so many reasons.  

But, it's time to let the site go.  Those very intense, terrifying days have passed and now my days are more like those beautiful colored pieces of glass one finds on the beach sometimes, with rounded edges and the sun making them glint.  I am ok in letting this go now, but am putting it on this blog so that I have a record of what it looked like.

In no way was it a professional website but it was my first.  And I guess the first of anything always holds a special place in one's heart - this one especially so.

Those were incredible days - terrifying, alive and so amazingly full of love, so intense, so aware and deep..  I wonder if there is a way to be so alive without some horrible diagnosis getting there first?  

And once more, Thank You to everyone that was there for us in those days as well as these.  Penny was such a part of that journey - I miss her.  I have so many wonderful memories from that time... and a deep and wonderful gratitude.

Love and Light

Annie

oh well - only half of it will fit into the blog - but thats ok....it's enough to remind me  :)

This journey is in honor of my son, Steven.  We are so tremendously proud of you. Love - Mom and Frank     On the Road to Cure Leukemia 15000 miles.  Two months on the road. Ride the Road with us!   Our aim on this fundraising journey is to raise as much money for the research and development of new treatments for leukemia and other blood cancers, as well as to improve the quality of life for cancer patients and their families.      All proceeds go toward patient services, blood cancer research and the ever-ongoing search for cures and better treatments for all blood cancers, including leukemia, lymphoma, Hodgkin's and multiple myeloma. The research dollars poured into these diseases also benefits other cancers, such as breast cancer, prostate cancer, GIST and others.   Together we CAN make a difference Together we WILL make a difference.   You can donate at any time during the year, not just during this journey.   Make checks payable to: Leukemia & Lymphoma Society Send donations to:  RoadRunnersUSA -  8794 Dayton Pike - Soddy Daisy - TN - 37379 or You can donate online through one of the links on this site; or You can pledge per mile traveled – our aim is 15 000 miles email me   If you see us along the road, hand us your donations -we will forward it to The Leukemia & Lymphoma Society in honor of all those battling with blood disease.   ALL monies collected goes to The Leukemia & Lymphoma Soc.   You can email us at Livingwithcml@yahoo.com Please understand that we won't always have a connection, but I will answer you as soon as I can. (please: no forwards, pictures attachments or junk mail)   Thank You!         Approximate route we will be traveling August and September 2006     We will leave from Chattanooga, Tennessee, at the end of July 2006, head up to Glacier Park, over into Canada and cross the Icefield Parkway. Then we head almost directly east into Edmonton Alberta, to meet Penny! She is a very special lady who is battling with lung cancer and who has had such an incredibly positive influence in my life. Together we have created www.penniesforcancer.com where artists from around the world have donated their artwork for you to download in exchange for a donation to the Leukemia Society or the Alberta Cancer Foundation.  Please visit the above sites and read more about our stories and determination to help fight cancer.   After meeting Penny, we will head up to the Alcan Highway and into Fairbanks, Alaska.  We want to travel down to Anchorage, Seward and Juneau before heading into Seattle, Washington.  Hopefully along the way we will be privileged to see the Northen Lights - a long time dream for us both.  In Seattle we will meet Debbie, a friend and a tremendous support to me, who's 19 year old daughter also has CML.This friendship is yet another example of something wonderful being born from something as scary as cancer.   Steven has an appointment with Dr Druker in Portland, Oregon in the first week of September.  Gleevec was developed by Novartis in collaboration with Brian Druker, M.D., director of the OHSU Cancer Institute Leukemia Center.  Gleevec is the drug that is literally saving my son's life. Both Steven and Laura will fly out for the appointment. We will meet up with them in Oregon in the motorhome and hopefully have at  least a few days on the beach with them both before they head back home to college and work.   After that we will head south along the coast for a way, then inland and begin the journey home again.  Slowly meandering all along the south western states still putting the important "Pay Forward" message out as much as possible along the way.  We will be walking in the Leukemia & Lymphoma Society's Light the Night walk somewhere in the country.  Where we walk will depend on where we are at that stage of the journey and the dates of the walk in that area.   This adventure is for all those with CML, their families and the people that care so much for them.  You have laid the groundwork for the incredible progress in dealing with leukemia.  You have all taught me so much, given me so much hope and helped keep me sane.   To the doctors that are working so hard on better treatment and the ultimate cure: Thank you - thank you SO much!   This ride is for you all, with tremendous thanks!       This is my son, Steven and Laura. (click here to be taken to his blogsite)   He is the main reason we are so motivated to make this project a roaring success.  These two young people are of the many children and young adults that should be dealing with life - not life and cancer.  It is in the hope of a cure for him and many others out there that we want to carry the "Pay Forward" idea across country.    A wonderful lady who ran in the Alaska half Marathon in 2005, told me an incredibly real part of her story.  She has CML and was running as part of the Leukemia & Lymphoma Society's Team In Training raising money for the fight against this disease.  Coming up to the half way mark, she looked up and saw a large group of people in purple, the Team in Training colors, running towards her.  Her eyes teared up as she realised that it was these people that helped her to have a life, helped the progress towards today and tomorrow's treatments of leukemia.   These are just some of the people who have a direct hand in Steven's life now.    How do we thank and honor them?  Do what they did!  Pay Forward....   Please have a direct hand in someone's ability to live.   Pay Forward by visiting one of the links on this page and donating in honor of all those who have fought and who are fighting this disease - in honor of those who are laying the foundation for the future survival of loved ones and for the cure of blood diseases.   All donations, whether through this website, checks or cash handed to us will go directly to The Leukemia & Lymphoma Society.  This is the only way I know how to help my son now - by raising money to further research for a cure.   Thank you!       Diaries of previous adventures - by Annie Baggett

Closeup..........

When I looked outside this morning, everything was coated with a crispy white frost, making beautiful little colored sparkles all over the garden as the sun came around the corners and over the trees and lit them up.

Of course I grabbed my camera and headed outside. I wish I had discovered this passion for seeing things close up, many years ago...... I don't find it so easy to get my nose 6 inches off the ground in the middle of the lawn and hang on to any sort of dignity at all! Thank goodness for the fence around the yard, but there is one place people can see through a different fence and I saw one person kind of stutter on their brakes when she saw me stretched out on the frozen pathway at 8.30am. All day long I wondered if she thought I had fallen or if she chuckled at my craziness... ah well.

I got some really lovely photos - but what is really fascinating to me are the thoughts that waft through my brain as I try to get 'The One' perfect picture. Trying to get so close up is not always easy as the depth of field is very narrow - meaning that only very little stays in focus at a time. As I move the camera back and forwards in tiny increments, different parts of what I am looking at become either in clearer or fade into fuzziness.. sometimes creating a totally different picture from the previous one.

And I started thinking.........when we are so close to someone who is working hard at kicking cancer, or any other serious issue, in the teeth - so much else of life gets fuzzy and out of focus. It takes just a little adjustment to see a different part of the picture, to get a different take on the whole. And also in life, sometime standing back or moving in makes it all totally different. This is what makes it so difficult sometimes to really help someone going through tough times. None of us ever stand in exactly the same place as another while looking at the same thing - we all see it from at least a slightly different angle.

When I go for a wide shot with the camera, trying to get a whole leaf or blade of grass into the same photograph, the smaller things go unnoticed. Look at these crystals, look at how they are all made - each one is so precious, so special and so unique. I think of all the years when I never even thought about what frost looks like! When I looked at that lawn after seeing the pictures - it's all so different - its beautiful in a very different way. I think about the wonder of those crystals - see how they don't close on the top? In each crystal the circle at the top is incomplete! Why, I wonder. But for now, I am just enjoying being able to see something I had not before.

It's very much like this since cancer entered our lives. I have seen so many more aspects of life, what's important, what's not. I have learned to look deeper than just the surface of people, to see that everyone has a story that is filled with little, precious, incredible crystals, some in focus today, some in focus tomorrow..... I know this sounds all soppy but it's so true. I have met people who brighten my days just like the sunshine on those gems on the grass....and all of them have put some part of my big picture into focus at some time along the way

I read something yesterday and it's been playing through my mind....... "Does the person create the journey.... or does the journey create the person?"  Interesting thought, I thought. :)

Today Steven worked with us again in the shop. It's really wonderful to have him hanging around for a good few hours on the weekend and interesting to see how fast he learns and just how much he does remember, even with the Gleevec. Today he said a few times that he did not know why he was so tired. He only arrived around lunchtime which was great 'cause I knew he had a relaxing sleep in and a lazy morning - always good for the soul. He had something to eat before he came, but also commented just before we closed at 5pm, that it was strange that he was not hungry yet.

Well. Yes. And no - I did not go into worry mode, but I have to admit that my antennae went up. Why would he be tired? Gleevec not working anymore? Why would he not be hungry? Spleen getting bigger again? Sigh - I know that the chances of this are probably very small and really nothing to worry about at all, but it does throw me back to those days when I did not notice this stuff, or did not think it was important. Pre cancer days. And I am much more aware these days.

Anyway - I don't want Steven to become too sensitive to every ache and pain and day of tiredness or such - but I did call him afterwards and mentioned that he should just not blow off these feelings, but keep tabs on them and tell me if they are still there next week. He assured me that he would. I know that I probably don't even need to mention it to him, but ............well, I am mama.

Anyway - here are the photos of today. And again - it's fascinating to me that natural things in nature are so close to my experiences these days...

love and light

Annie

Time goes by..

So many times I have fretted and literally wrung my hands, wondering why people who are doing well with cml don't write about it!  Tell others the good news that life goes on, that things do fit well into that 'new normal' and put my mind at rest......  Well, now I see why.  When things go well, life once again morphs into.......well, life.  

I asked Steven just the other day how he is doing on the cml front and he says that he is just fine - no side effects, no cramping, no pains, no - nothing - just life as he wants to live it!  How amazing is that?  So, when he is doing so well, what do I have to say?  I really have no news on the cml side of things at all.

It's a really good feeling to feel human again, to be able to breathe easier, not to have the level of worry of before.  Reading so many other blogs has given me the knowledge that no matter what comes our way- we will deal with it, one way or another.  It's interesting how easily I cry at the troubled times of some of those people I am following...  Sadly, Erica passed away on December 4th after battling with leukemia.  Dawn is having a really rough time of it lately too and Tyler is not yet quite off the bumpy road either.  I hate this disease!  I hate it.....

Being in the 'cml community' makes me so incredibly grateful for the life we have, the opportunities, the goals we can set and the dreams we can still dream.  In many ways it makes me excited about life - its given me a deeper way of looking at life with a lot more appreciation of the little things too.

Being is such a good place right now, I find that my 'creative' side is wanting to come out and play again.  It's been like this for a while now, but lately I have this need to do something fun, nice, exciting.  I have my camera within reach at any given time and have even ordered that awesome new 21 megapixel Canon!  Ooooh - this is really exciting!  It will still be about 4 weeks before it arrives, but I am looking forward to its arrival in the same sort of way I looked forward to the birth of my kids :)  Maybe I will even start selling some of my photos.... :)

I described it to someone this way - its like being a flower, all curled up for a good long while, then carefully letting one petal out to taste the sun - it reports back good stuff, then the next goes out and so on..........like this....

I know that all this good stuff can change in one simple blood test, but I cannot look at life like that anymore.  I cannot sit and wait for the bad stuff - it might never come and what a shame all that wasted time would be!  Besides, I have a good feeling that Steven would just hate for me to do that - I know he likes seeing me upbeat and excited about life - I am sure it assures him on a deep level that all is well with him too :)

I hope that my re-excitement about life shows someone else that life really does get better, that it can even out and be better than the old normal - well, in my circumstances, it did, and not a day goes by that I am not deeply grateful - for everything.

Here is another photo - this one is the nose of one of our doglets - and when I look at it it makes me think that I am sniffing the wind, and good things are out there......  I wish this for everyone.

love and light

Annie

Happy Thanksgiving

To everyone in my life - you are all special, beautiful and unique - like the ice crystals on this leaf.  Each of you is a part of my life and without you, my life would be emptier. Thank you!

love and light

Annie

Freaky face...

Today I was playing around with the camera again and took this pic of a little critter my sis, Kate, gave me a long time ago.  I laughed.  I bet I look like this around test time!  

just because...... :)

McKenzie Rose.......... she's so cute! :)

Fire Trees!

Oh today was awesome......the sun was shining and it lit up the trees in an incredible way - fire trees!  So I took Number One Doglet and my camera and walked down the road to get some photos again.  I really feel myself coming alive when I see the world through the lens.  So many things some to mind - comparisons between real life and the life we are living in worry and tests and happiness and sadness.  When I put the pics on my computer and zoom in, its easy to see that life in itself is a miracle and that its all important to enjoy the minute - like the dew drops on a spiderweb, they will soon be gone.....

No matter what - the trees will glow like this for as long as the earth breathes....... here are a few and some more on this site:  lens2life.blogspot.com.

And  I had both Steven and Lisa in the shop today, with Joleen very much in mind....

Ok - here are some photos of today

Love and light

Annie

Join the Marrow Registry for FREE in Nov.

Join the Marrow Registry for FREE in Nov.

November is National Marrow Awareness Month. Otsuka America Pharmaceutical, Inc., has provided an unrestricted grant to cover the cost of tissue-typing tests for potential donors who join online.

This is your chance to join for FREE. What are you waiting for?

Join online for free while funding remains.

It's easy to join:
1.  Confirm you meet basic donor guidelines.
2.  Complete the online registration form. This step will take about 30 minutes. To join for free, you must complete your online registration before November 30 or while funding remains.
3.  Use the kit mailed to you to get a swab of cheek cells. These will be used to test for your tissue type.

NOTE: When filling out the application, it will ask you for a credit card number and it will still mention the $52 fee normally charged. Ignore the $52 fee and don't enter any credit card information. On the final page it will show a $52 fee and a $52 coupon making your total $0.

JOIN BY CLICKING HERE

For more info on what joining is all about, CLICK HERE!

a bit more.......

I was just sitting here for a few minutes before going to end the day....and I realized that I am smiling again. It's like a reprieve from something truly horrible, this getting those results! Even if they are not perfect or with numbers or anything - at least they tell me that my son will be ok for a while longer at least. There is no way to fully describe this feeling, it's too deep, too meaningful.

The difference in me is difficult to grasp - even after just minutes of seeing the results. It's in the way the moisture that jumped to my eyes in relief, dried before they became tears, it's in finding that relaxed smile or realizing just how many muscles were clenched and tense in anticipation. It's in how I looked around the room wanting to reach for my camera again - first time in days and in the lovely feeling that I see me again - well apart from my mom in the morning mirror!

Whatever it is, I know how incredibly blessed I am in SO many ways.

love and light
Annie
Here are my three chickens and my eldest nephew, 4th chicken (in solid red), many many years ago.   Steven in rear right, Joleen front left and Lisa in blue. All so sweet and cute and happy and healthy! So incredibly blessed we are .......

"The Same" ?

Ok - here it is......

Bcr-abl is detectable, but housekeeping gene level suggests a partially compromised sample such that accurate quantitation is not possible. However, this sample appears to have comparable bcr-abl levels as this patient's sample from 7/17/08.

It's just as the lady on the phone said - "the same" and I am just going to go with that till the next pcr.

The whole day today was unsettled for me.  I knew that there was nothing dramatic in these results, but because I did not know the exact wording, my soul just would not settle down and accept.  I get so tired of feeling like this.  The withdrawn, detached, pre-occupied feeling even when there really are no flags to warn of change, is a lonely place.  I guess its a selfish place too, as I don't let others in when I am there, which is why its lonely there.  I don't want to hear the 'it's going to be ok', or the 'why are you worrying' or  the 'he's fine! Stop worrying!'. I know all these, but I want someone to bash the establishment with me - I want someone to be pissed off and frustrated right along with me - but at the same time, I know absolutely that its not necessary nor is it the wisest route to go.  My online friends have been awesome in giving me exactly the mix I needed and wanted and Frank has been Frank all along, which creates a tremendous grounding for me.

Anyway - right after Steven said that he would drop the 'non-results' off tonight, I felt the frillies leave.  Wonderful!   I know that I worry more than others do, and maybe more than what I should - but this is me and I can only be totally me.  I am much better in the in-between months and really did not even count the weeks till these results came in - it was a pleasant surprise last Friday when I realized that it had been 3 weeks already!  So, I am improving.  It's necessary.

So many things were screaming through my mind today and this evening - so much to write about, all those upside down, inside out feelings......but I cannot grab hold of them now long enough to describe them.  Lovely  :)

It's incredible to think that we are nearly at the end of another year.  They are just screaming by with no consideration for all the things I still want to do.  I see my kids getting older and older and a woman who looks a lot like my mom, seems to be appearing in the mirror in the mornings....  Soon we will be at the three year mark with leukemia in our family and I have to say that I am incredibly, incredibly grateful for the way it has progressed, or rather, NOT progressed.  There are way too many people having a really rough time with this disease......

Special thanks to Lea, Diane and Kay for the hand-holding and flittering you have done, once again, with me during these past few days.  Kay, your description of medical administrators was priceless!  Thanks everyone for the comments you post here, and HockeyChic - I wish I had your email address.  All of you help so much during my frilly times.  Many many thanks.

With a smile

love and light

Annie

Sort of waiting....

I am not sure if we have an answer or not..... 

On Tuesday morning I again called the Onc's office to see if they could pull his chart and get me the numbers..  After talking to yet another 3 ladies, I was once again told that they would call me back.  Again.  So I waited some more.  I know this is a small office that I was talking to, I also know they are busy - but geez!

And when they called, her answer to my question was: "it's the same as last time".

Me:  Ok - so what are the numbers? You know........ the 0.something-or-other numbers.....

Her: There are no numbers - the doctor just wrote that they are the same as last time.

Me: Well, (through very tightly clenched teeth) what does the report SAY?

and so she started reading and I am not sure that my words are correct, but it went something like this..... " the housekeeping gene shows signs of (I think she said) degeneration and therefore no reading could be taken - but it's assumed that it's the same as the last pcr test".

Is it the 1st of April??  I sat there for a few seconds, calculated the days till Steven's next appointment and the importance of getting any frillier - and let it go.  I thanked the lady on the phone and hung up.  It's quite amazing how sweet one can sound when talking through gritted teeth and hanging from the ceiling by one's fingernails, but it's not her fault - she had no idea even what she was reading.

Steven called soon after and said that his appointment was on this Thursday, I had thought it was next Thursday, so it does not make sense to worry about it any more.  This time.

So maybe, maybe tomorrow we will have some answers.  It sounds to me as if another pcr will be taken rather sooner than later and we will see what that one says.  Maybe.  But lets see.  And maybe next time I will not call for those results early.  Maybe.  

The funny thing about worry is that it really makes no difference to the outcome at all, but I have not yet found anyone that can honestly say they don't worry at all - not even a teeny tiny bit.  Lottie said that worry is like a rocking chair - you go backwards and forwards and backwards and forwards, but nowhere else.  This is so true.  

I really don't spend the time between pcr's worrying - its just the last day or three when the results are due.  That's when it hits and the nailbiting starts - the rest of the months pretty much are back to .......well life as it is.  And it's good.  It really, really is.  I know just how fortunate we are that Steven is doing so incredibly well...and I am tremendously grateful.

More tomorrow.

love and light and a hug to Kay

Annie

:)

Angry week

This week I am angry.  I am angry at what this disease in my son does to me.... It's not my illness, obviously, but it invades every part of my life.  I am angry at the feelings it brings to me, the "scareds" it delivers sometimes first thing in the morning before my eyes are even open. I can feel myself much more touchy, much more irritable and aggravated as the days get closer to being able to get Steven's PCR results.  I am angry that this disease can and does royally mess up full days at a time and yes, at times when I think of these words we now all live with - cancer and leukemia - at times it takes me to places I just don't want to be.

Recently, and very sadly, Cam passed away after two transplants to try to whip this disease. I also started reading a blog just last week of a lovely young lady, Erica - and now the news for her is not good at all either.  Others like Tyler and Dawn are also battling so freaking hard against it.  WHAT is going on??

I don't want to think of this disease in any other way than it being 'the good leukemia', or 'easy to control' or 'like diabetes' - but this wait for the quarterly results really blows all those easy thoughts to the wind and leaves me a much less nice person to deal with with many thoughts that I definitely don't want.

I wish that the doctors, nurses or the aids or receptionist or ANYone at the onc's office would realize just what waiting does to one, and in a show of utter kindness and understanding would call people with their results!  Or even just call to say that they are in and ............  Well, you get the idea.  Instead, I am left counting the days since the blood draw, biting my nails while I wonder whether three weeks is enough time to wait before calling the onc's office and being told that I will get a call back, and then more waiting.  I could not handle that on Friday, so I did not even call.  Steven's appointment is only in 2 weeks time and I know the results will be back way before then.  

Can I wait?  If I have to. But do I have to?  AAaaaarrrrrrrrrrgggggggghhhhhh.  At least it's weekend again and I cannot do anything about it till Monday anyway.

Another thing that gets to me is that in this time of worrying about those results, I tend to look for other blogs and stories about cml.  I keep hoping to find happy, successful stories.  I want to hear about others in either Steven's position or mine, that are having raving success with 400mg Gleevec and getting on with their lives.  But sadly, I keep coming up with more and more people struggling to live, having to change meds, dealing with difficult side effects and on and on.

Even the support boards seem to be filled with people moving from one medication to another because of  mutations or lack of response or something.  I don't have any reason to gripe at all - Steven is doing well and  joining in those discussions seems, well, silly in the face of the struggles of others.  So, again - I am left clawing in frilly-ness for happy stories to help me through these waiting days.

I know - I am fortunate.  Steven is looking great and so far Gleevec is doing it's thing........... and now I am off to bed to read till my mind shuts down for the day.

love and light

Annie

Donor Day in words....

Oh boy - where do I start........  Saturday was a day that had an incredible number of different feelings surrounding it way before it started!  By Thursday evening deep disappointment had replaced any nervousness.  I had called everyone on the list of people who had voluntarily signed up and only one guy said he would make it to the drive!  I was so terribly disappointed and sad too that it appeared that the day would be a waste of time.

I read late into the night on Friday so that my mind would not keep on working long after the light went off,  like the night before.  And it worked - I slept better than any baby ever has.....  On Saturday morning the sun literally shone so brightly that it felt as if the light was being forced into my brain.  I smiled and knew it would all be ok, no matter what.  By then I knew that my daughter, Lisa and her husband would be up here and they were both going to join the registry and my sister Kate too - and that already tripled the ‘only one extra person’ idea.

And so the day started on a much better note than the day before.  The Vein Voyager Blood bus arrived at around 11.30am with five very lovely, very capable young ladies with what appeared to be an unlimited supply of smiles and gentleness.  And Alta, the “Marrow Lady”  arrived and set  up her table full of forms, pamphlets and papers inside.

Dawn and Greg from Carolyn’s Hope arrived with Tyler, their six year old son - it was absolutely wonderful to have them as back up all day long!  They both had wanted to get on the Marrow Registry and donate blood and had waited for this drive to do so - awesome :)  A big thanks to both of you for everything - we really appreciate you and I hope that next time we have more time to sit down and chat.

Steven and Laura stopped by in a quiet time and I introduced him to those that were there and all the ladies in the Vein Voyager too.  I wonder just how deeply I embarrass this son of mine at times, but they did not run off quickly and after a while I told them to head out and get on with their day.  He is so good and gentle with me when I get on a roll and 'show him off' - its just lovely.

Right here I must put in a REALLY big Thank You to the ladies of Kays Kastles.  Their premises were perfect for the drive and the atmosphere was all open and sunny and bright.  They helped me on every level they could and were just simply great!

Slowly people trickled in, and the one little dark cloud that thundered by was because my sister Kate was royally ticked off as her iron was too low to donate blood!  But she did sign up on the marrow registry, which sent that cloud back into oblivion.  A good many people who donated blood also signed up on the registry which was double wonderful.  It was absolutely awesome to see people hunched over forms, spending their time and effort to make themselves available to possibly save a life.  

I tried to talk to every one of the new members of the Marrow Registry and tell them how much I appreciate their willingness to help.  All of those that I spoke wished so hard that they would ‘be picked’ to be a donor.  They all said that it would be incredible and an absolute honor.

I had hung a good many photos on the wall.... these were of people who are dealing with cancer in some form or another and sadly two photos were in memory of people who are no longer here with us - Adrian from the UK and Carolyn, Greg’s mother who could not find a match.  Another of the photos was of Dawn, a young lady who needs a marrow donor but has not yet found a match.  When the local tv news guy came up and I told him the stories of those on the wall - he immediately zoned into Dawn’s photo and it was she who got on our local news later that night.  I had written on her photo that she needs a donor.  I so hope and wish that Saturday will help her.

To see a face of someone so young and beautiful, with a sparkle in her eyes and yet fighting such a tough battle really put meaning into the drive.  I know what I saw in the eyes of those that looked at her - determination to do what they could to help either her or others in the same situation.

All those photos made the donor drive come alive.  All of you sat there with us with pride, a sense of humor and determination.  You showed us parts of your lives, your kids, mothers, fathers and husbands or wives, there were even some that had their donors with them too.  You showed us what is important in life and by doing this you helped increase the Marrow Registry by 15 people.  

Fifteen extra chances for everyone needing a donor.  I know its not as many as I would have liked....... that number is closer to 5000, but it’s 15 chances extra - thats wonderful!  And I know that all of those that signed up on Saturday will tell at least one other and so it will go on and on and one day maybe it will be a normal thing to do when we come of age - get on the register.

Alta,  from The National  Marrow Donor Program is wonderful. She was so easy to chat with, has lots of fascinating things to share and easily engaged with people who came in just for an ice cream and handed out information books to those who needed to think about joining.  It was wonderful to share the afternoon with someone so upbeat and cheerful and full of positivity.

The “Vein Ladies” on the Blood Assurance bus just seemed to have a blast all the way through.  Every time I went on board to get some photographs, there they were, full of laughter, joking and warmth and sometimes hanging out of the back windows chatting the the guys outside (see pictures below).  They really made everyone feel totally at home and even promised to sharpen a needle for me as I am a baby when it comes to those sharp things.  Well it turned out that I could not donate blood anyway as I had surgery while living in South Africa.  What a disappointment!  Ok, ok - I will admit to a slight feeling of relief at not having to get jabbed but what a pity that a surgery over 20 years ago would eliminate me from ever donating blood here.  I would have donated if I could - even had my I.D. ready.  I am already a card carrying member of the NMDP - that sounds so good!

So the day was a success - double digit donors and all.  19 blood and 15 marrow donors. It’s a day that has started many a conversation especially amongst the younger group that came to sign up and also has kindled some ideas in my head for a future donor drive. 

It was Adrian and his determination to do what is right, that got me off my butt to do this donor drive.  Yes, I could have done it because of Steven, but I had not yet done so.  Adrian definitely pushed me out of my comfort zone to do this.  I think that the idea that he started, the education of the younger generation, is what will carry all donor drives to true and great success.  Adrian’s Army is world wide, can be put into effect by speaking to just one more person, by holding a donor drive or by doing the many available things that can be done to spread the word about the need for donors.  Talk to just one more person.........

 Being out of my comfort zone while putting this donor drive together was scary, frustrating and disappointing at times..... but mostly it was wonderful!  There is nothing quite like spending a day surrounded by people who want to make the world a better place, who are prepared to go through some discomfort to make a difference and who do this with a wish that they ‘get picked”!  

A really big Thank You to everyone who signed up on the Marrow Registry or donated blood - you are true lifesavers!  Thanks to everyone that helped, supported and encouraged, listened to my fears and gripes over the weeks running up to Saturday. Thanks to those who sent me your photographs, to Kays Kastles, Amber from Blood Assurance , Alta and Carla from NMDP and The Vein Ladies!  You were all awesome and it’s you that made this happen.

Love and light

Annie

More than "just one extra"!

This is what its all about - Dawn is needing a match ASAP!

The local tv channel aired a quick bit about the donor drive and this is who they showed most of the time.  I just loved it!

Anyone that is not signed up - DO IT! You might be a match for her or someone else who needs it right now........

Alta - the "Marrow Lady".  What a lovely person she is - so easy to chat with and she had no problem grabbing the walk-in's and educating them.  It was great to see and learn from her.  We hung the pictures of people around the area she used to sign people up.

 

Great job, Ryan and Casey  :)                                                                          

 Lisa and Brian  - double signup.  Whooo hooo!

And then Greg just HAD to make a scene!  LOL

 James and Monica - another double signup!  Thanks you two :)

Blood and Marrow donor!  What a lovely attitude - this was a pretend grimace as he was giving his Vein Lady a rough time.....:)

Dawn donating blood after signing up on the Marrow Registry

Yet another donor.... He was on tv afterwards too.

 

Just 'cause she is so cute and she was there!

 More very special people - our Guests of Honor for the day:

Christine (in red) - a new member on the marrow registry and a blood donor too. Thanks Christine!  She is also one of the awesome ladies at Kay's Kastles who allowed us to use their place for this drive!  Deep thanks, Ladies!

 Brian in the blood seat - great job! :)

Talking about you, Lea:

Andre giving blood :) Thanks for cutting your sailing race short to do this!

Another Andre signing up for the Registry after giving blood  :)  Thanks!

Dawn and Greg - lovely people!

Greg, Dawn, Tyler and Carolyn's Hope.  You are doing an awesome job - keep it up!

Love the concentration - Greg signing up on the Marrow Registry  :)

The Vein Ladies taking a break.  I love this picture.  I can only guess at what was so incredibly interesting outside........maybe two guys and a dog? :)  ok - leave the dog out of it.......

m

These young ladies were incredible.  There was never a shortage of smiles to dole out, the sense of humor was lovely and I especially loved that they even offered to sharpen the needle for me!  A really big thanks to you all.

The Vein Voyager

Donor Drive tomorrow

Oh wow, where is all this worry come from?  I know it will be all it's going to be and no matter how many people we get to come in, it will be a success.  So why am I even feeling as if the gray hairs are sprouting madly all over my head?  

Here is the link to the article on Glamour.  Erin gave such a beautiful intro for me that I feel as if I need to do more!  Thanks Erin!  Just what I need right now....... :)  

http://www.glamour.com/health-fitness/blogs/life-with-cancer/2008/10/today-please-welcome-annie-a.html

I have a good many photos printed out to hang up so that people can see that being a donor really does make a difference to real people with real lives.  Thanks to everyone that so kindly helped in this way - I really appreciate that, and also that you shared your story with me.  

I will take photographs, of course, and will post them up soon too.  I am really looking forward to meeting Greg and Dawn.  I keep hearing what Greg's mom, Carolyn, had to hear and what Greg and his family heard too - "there is no match for me".  Lets hope that this drive tomorrow makes at least one less family hear these words.

Love and light

Annie

Happy Birthday, Steven!

A quarter of a century ago, my first child was born.........what an incredible experience that was. I remember looking at him and thinking, with a quiet chuckle, that although he was the most beautiful boy ever born, he also looked like a combination of my dad and ET.  

But now he looks just awesome.  :)

Happy Birthday, Steven

May it be the very best year for you yet, filled with love and smiles and a million wonderful memories made.

I love you and am incredibly proud of you.

Always

Mom

ps - here is a gift for you.............the moon!

Just ONE extra person........

So now that this ball is rolling and there is no turning back and I have to absolutely make this drive the best it can be - my stomach is churning and I started getting 'freaky' about it being successful.  What if only a few people turn up?  What if half the people that committed, back out.  What if people just don't get it and .............well, it flops?  So many what if's.  Most of them coming in the late night hours.

 I shared this thought and worry with one very special lady, Lea.  And her answer opened my eyes......... "One extra person saved my life", she said.  Think about it.  

ONE extra person saved Lea's life;  

ONE extra person saved Shane's life;  

ONE  extra person saved Trey's life; 

ONE extra person gave Adrian long enough time to make a very real difference in so many lives; to mention just a few...

  

Just one extra person has saved, helped and lengthened lives all over the world.  Just one.......... 

What an absolutely awesome concept!  In today's world, so often I feel helpless, incapable of really making a difference - I mean a real difference.  It's not easy to raise funds, to raise awareness, to keep on talking about cancer when so many days I just want to bury it deep and forget that even the word exists!  It's not easy to convince people that getting on the marrow Registry and even being a donor is not the terrible torture that just the thought brings to mind.  None of it comes easily or naturally to me.  But Lea's words today, her reality, her life - all made possible by one single person....... wow.   This really lit me up and put it all back in perspective.  Of course I knew this before - but put so simply - well, that really made it sing.  Thanks Lea!

Simply put, I am in awe of all donors and my aim is to add one donor at a time to that registry.  Just one.  I guess it's like losing weight - one pound at a time.

This is how you can help.  I need your photos.  I need photographs that I can print out and hang on the windows and walls where the donor drive is being held.  It's inside a lovely ice cream parlor that has plenty tables and chairs to sit at and look at the wall and window space that we plan to fill with pictures of those needing blood, needing donors, going through transplant, been through transplant, and of course, the donors and the families affected by every aspect of this!  So, if you would like to make this drive more personal, more real - please send me your photos!  Make them family pics, single pics, hospital pics - any photos will help to show others just how this affects everyone dealing with this disease.  Send big files so that I can print them 8 x 10 size and send to: livingwithcml@yahoo.com.  I would really appreciate any and all photos.

One of our customers has a grandson, Hunter, going to transplant at Vanderbilt next week.  This little 12 year old has Aplastic Anemia and he has needed lots of blood to keep him alive over the past years.  Now it has come to the point where that is not working any more and he needs to get a transplant.  He has a donor, but his story made me realize just how important it is to be a blood donor too.  Another really easy way to help keep someone alive and another way to make a real difference in someone's life.

Remember - it takes only ONE extra person to make an enormous difference in many people's lives.  A whole community is affected by the help of one donor.  Talk to one more person, teach one more person.

Just ONE extra person.  I know just how much that one extra person will count if Steven ever needs to go to transplant..... There is no indication of this at all at this point, but I am always aware that everything could change in the blink of a test result.   This reminds me - the 'elephant' arrived yesterday morning - that's the PCR kit that will have it's tubes filled tomorrow and sent off for another view of where this disease is in Steven.  I have to say that he looks great, sounds great and is looking forward to a week on the Florida coast.  Lucky bugger! :) 

And here is the link to an article that was in our local paper today - look at page 6.

http://community2.timesfreepress.com/news/2008/oct/08/soddy-daisy---october-8-2008/

love and light

Annie 

Marrow and Blood Drive

On the 25th October, 2008 we are holding a blood donor drive in combination with a drive to get as many people signed up on the Marrow Registry as possible.  Normally there is a cost to join the marrow registry, but because we are doing this combination drive, the cost will be carried by Blood Assurance.  Wonderful, hey?

I want to get the word out firstly that to join the Marrow Registry simply m

eans giving a swab of saliva and then the data from that is entered in the registry.  The process of donating marrow is now mostly done via the arm, where blood is taken out, run through a machine that separates out the blood-forming cells and the remaining blood is returned to you through your other arm.  No drilling into bones, no bone removed and even if you do donate by actual marrow, which is an outpatient surgical procedure, you will not feel the pain - the anesthesia is goood, I hear :)

The recovery time after a donation is, in both instances, normally short and, in my opinion, the chance to save a life far outweighs any discomfort of either procedure.

But - back to the donor and blood drive.  I would love to make the benefits of donation, both marrow and blood, very real to every person who walks into Kays Kastles Ice Cream store on the 25th.  I want them to see the faces of those living because of a transplant, needing a transplant, because of blood and because of donors!  I want these faces all over that place and I would love for people to be able to talk to and even meet people dealing with different conditions needing marrow and blood and also the donors! 

I feel that being able to talk to someone who has been a marrow donor will alleviate many of the myths about this process.  So.............if you would like to help in this way, please send me a photo of someone you know that is dealing with this in any way - tell me whether they are needing a donor, already had a transplant, whether they regularly need blood or if they are a donor.  And if you are nearby, please come up and join us - we would love to meet you!  Greg, Rhonda - you still coming up? Pretty please..........:)

If anyone has any ideas, suggestions or anything that you think will make this drive all it can be, please email me and let me know.  This drive started off as one in honor of Steven and in memory of Adrian who is still making incredible changes in the education of people about donations, but now it has become more, much more.  This is a public blood and marrow donor drive - open to the public and for the public.  I still view it under the umbrella of Adrian's Army as it was because Adrian did so much that I got my behind out of neutral and got this ball rolling. In addition to Steven and Adrian being the main focus, this has now become a drive in honor of everyone dealing with the medical conditions that require blood and marrow in order to survive.  It's in honor of all those that fight this fight, their caregivers and supporters, its in honor of everyone that deals with this on a daily basis, in honor of those that have already saved lives by giving blood or marrow and in memory of those that have not survived - its because of them that so many of us do something positive to try to make sure that less people have to fight this fight.  

It's quite incredible just how much strength I get from others, other people with cancer, those that are cured, those that are waiting for that cure, those that love them and can only sit and wait and hope and those that are donor.  Those donors really do hold a special place in my heart.

And now I find myself rambling.  Just finished watching the Biden/Palin debate and needed to fill my mind with positive things.  Wow, did I just say that?  Cancer is more positive than politics??? WOW  What a good note to end the night on.

Love and light

Annie

Making ripples........

Oh so much has been going through my mind and yet so little......  I know - that sounds weird but it's so true too.  We were traveling for only three weeks this time, but the beauty we saw was simply amazing.  The man-made at Mt Rushmore, the absolute awe in Yellowstone National Park, the ongoing amazement over the Canadian Rockies both ways and those Northern Lights!  

I have come to the conclusion that all the beauty in this world is not only there to balance out the stuff that is not so good, but it also really puts everything into perspective for me.  There is no way I can stand at the edge of a geyser in the caldera of a living volcano, watching and listening to it boil and feel that I have any sort of control in the big scheme of life.  Driving through the Canadian Rockies, through those totally awesome mountains topped with glaciers hundreds of years old, with rivers that will flow with melted snow and ice whether I am there or not - well, this all helps put everything into perspective.  I think.

While driving the rv along many long and beautiful roads, my mind wandered over many topics and ideas, wishes and dreams.  One was why life is not fair.  I played with that one for a goodly while until it struck me (again) that life is neither fair nor unfair..... it just is.  I toyed with the idea that if we all had life our way, wanting no pain or suffering, bearing no losses of loved ones and having almost everything we felt was 'fair'.........well, maybe then we would all be stagnant.  Maybe then we would not appreciate what we have or who we have in our lives.  I know life is not as simple as this, but when I am out there, standing in the waters of a river in the middle of nowhere, surrounded by unending and majestic mountains - well, it all seems terribly simple and basic.  And then we get home again.  This is why I surround myself with photos of these beautiful places.

The mortality of myself and those that are firmly implanted in my heart, make me think seriously about what is important in life and what is not.  And again, when think about those deep blue pools of boiling water in Yellowstone, the towering mountains and especially those lights flitting across the sky...... I know, I KNOW that there is nothing as important in life as letting those that I love, know that I love them.  There is nothing as important as giving life everything I can and enjoying the awe of what I can see and the awe of what I can feel.

And now we are home again and very busy again which is totally amazing.  So many people waited with their sick computers, for us to come home and then descended like hungry vultures.  Frank even put in two new workstations, for a total of 8, which have been full almost all day, every day.   But I have still had time to sort through the photos of these lovely places we went and even started sorting the photos of the last trips.  I have hundreds of photos stapled to the walls of the shop and playing on computer screens, reminding me that there is always something bigger and more wonderful than any worry I have, that it will all go on, despite what is happening in my life.

And now it's time to start getting the blood and marrow drive on the road.  I met with Amber from Blood Assurance today - she has been so helpful and encouraging, what a lovely lady.  She brought me flyers that they had printed up for the drive and some other useful information too.  She also told me that her husband was recently identified as a matching marrow donor for a patient and just a few weeks ago went through the donation process.  Another hero!  

I am hoping that he will  share his thoughts on being a donor with us all on this blog. I was humbled by the tears in Amber's eyes as she described the process that he went through to save a stranger's life.  These people that donate, whether they are a sibling, a stranger or a friend - they are all absolute hero's in my eyes.  I also think that the more people can hear about their good experiences and how relatively easy and safe it is to save someone's life, I really believe that it could make a difference in the number on the marrow registry.

Just another thing.  My main drive has been to get the numbers up on the marrow registry, but recently I have been reading a few new blogs and it finally sunk in just how important it is to donate blood too.  I never realized how often people needed platelets after a transplant to 'pick them up' to give them strength and, well, to keep them alive and going!  So now I am pushing the blood donation side just as hard.  It's life.  It's truly life in the truest sense. For so many people in so many situations.

The fact that I have been so incredibly blessed to be able to see the amazing sights I have seen kinda gives me a responsibility to .......well, yes...... pay forward.  To give back to a life that is so wonderfully good to me.  The blood and marrow drive is one way I can do this, it is one way that I can take one step on the road that Adrian carved out........ 

If any of you are nearby, please join in on the 25th and donate blood, sign up on the marrow registry or just come and share your story.  We need to hear the transplant stories, need to meet the hero's who made them possible.  We need to make this part of life known and to let as many people know that giving life is possible with a relatively easy process.

Steven's pcr is to be drawn again on the 9th Oct and the wait starts again.  He looks great and, well, I am just simply so proud of how he is handling all of this.  I have handled it by writing this blog and meeting incredible people. 

Thank you, thank you

love and light

Annie

This is what I want to do - no, no - not to swim in icy glacier water, but to make ripples in life.  Lovely, gentle ripples and maybe they will turn into waves somewhere down the road.

Light the Night!

We have been back home for a week now and it has gone so fast and its been good in so many ways.  There have been many times when I have heard those cogs in my brain frantically cranking to get up to speed again, to dredge the things I know that I know, to the forefront again and get back to real life and the things that need to be done.  

Going through our mail that Steven collected while we were gone, I noticed that the Light the Night walk was tonight!  The first year after Steven's diagnosis, we were out of town on that fundraiser to Alaska, the second year I was angry about it all and this year - well this year I just wanted to walk.  Steven had made other plans and after the initial "oh what a pity" thought, it hit me how right this is...... we will walk in celebration of his ability to live his life to the fullest, to enjoy and not be tied down to leukemia in any way.

What an experience.  We had collected a few hundred dollars in the shop over the last few months and this was a good time to hand that over to the fight against this disease and we got a Light the Night t-shirt each to wear for the walk.  So I promptly hauled out my permanent marker sharpie and started writing names of people involved in cancer all over that shirt!  You should have seen the looks on people's faces.  I then did some fancy handwork and out from under the new written on t-shirt came my ordinary shirt and I was ready to walk.

And then we collected our balloons.  Together we carried four.  The red balloons are for the supporters to carry, the white ones for the survivors and the gold balloons are in memory of someone we loved that did not survive this disease.  We carried three red balloons and a goldie.  Frank carried his one for Steven,  I carried one red balloon in honor of Steven, one red onein honor of everyone I know dealing with leukemia - caregivers and fighters, with Cam and Cora at the top of that list and a beautiful gold balloon in memory of Adrian on behalf of Kay, Keith, Carrie and family.  Yup, I wrote on the balloons too.

The walk was held in downtown Chattanooga, right next to the Tennessee River at Coolidge Park.  It was beautiful there, with the sun setting over the river, highlighting the ripples on the river and lighting up the soft green grass of the park.  The park was full of people playing ball, throwing frizbee, listening to music, biking and just ambling around.  Then as the time went by everyone headed towards the Leukemia Light the Night Tents where the different color balloons were being blown up.  The colors all around were lovely and it was awesome to see that most people were smiling, kind, gentle and friendly.  It was quiet, not hushed as if something was wrong, just quiet in a way that said that everyone was on the same page and respectful of the very many feelings that were rushing through everyone and all at peace with being there.
The lady from the local chapter of the LLS gave a beautiful speech and four candles were lit in honor of those fighting this fight and those that have gone on ahead.  It really was beautiful and I want to contact her to ask her for a copy of that speech.  Then the walk started.  One very energetic and lively lady with a beautiful smile and a determined gait, led the way out of the park, on to the street and up to the first bridge.  

I don't know that I can explain the feeling of looking in front of me and over my shoulder and seeing a sea of balloons both ways and knowing that every one holding those balloons 'got it'.  They knew about the fight, from which ever angle they had to deal with blood cancer - they understood the scared's, the fears the hopes, the happies and they all seemed to know that it was ok to smile, to laugh and to live to the fullest too.  So, we swarmed over that bridge watching the last of the sun setting as some motor boats delivered even more ripples.  Some people passing by, not involved in the walk, looked at us all with puzzlement, others were explaining to their kids what this was all about but mostly none of them made eye contact and they carried that certain type of hush that says that they, thankfully, are not dealing with cancer in their lives!  Walking in a beautifully large group of supporters and survivors it was lovely to see so many that are not affected by cancer.

We trundled off the first bridge, through a little bit of downtown, nicely protected by the firmly raised hand of the traffic cops, down a lovely steep hill and on to the second bridge headed back to the park.  I was stuck by the number of young people walking and by the respect shown and the understanding and gentle arm touches amongst everyone as they passed by.  I walked with my balloons fluttering above me, and hoped so hard that even our small contribution, show of support to others, hoped that this would be at least one little drop in the ocean towards a cure.

As I walked I thought of all the love and caring that I have been shown over these last couple of years, of the friendships that have formed, the hope shared, the heartbreaks and the joy in good numbers.  How absolutely rich my life is!

Watching hundreds of people walking over the bridges with balloons with lights in them was very emotional and totally beautiful.  There was an old man that walked alone with a white balloon.  He did not seem to want to walk with anyone and hummed with a lovely smile as he walked, seemingly happy in his own space.  Then there was the family with the kid, still bald and with a t-shirt that said 'Survivor!' on it - he skipped almost the whole way with a beautiful smile and bright sparkly eyes!  Even the little kids were well behaved - there was no whining no crying - no matter how young they were.  Again, the number of people that seemed to be in their twenties, was quite amazing - I think they made the biggest group.

And then we wound our back off the bridge, and back into the park, through the row of luminaries that had been placed along the last part of the path.  I had put one up for Steven and one for Adrian.  Just seeing those lit candles got the tears running.  People, me included, took many pictures and we all took group pictures of others so that their group would be complete in the photos and memories.  
I did not want to leave there, I wanted to hang around until the last person had left and beyond - it was as if there was a little bit of everyone's soul there...........strange.  But off we ambled and then I spied a fountain.  Yup - water.  And we headed that way to capture this lit up fountain that was just beautiful in the night light. It's one of those fountains that you can walk around in and cool off or just enjoy, and right then two little kids did just that!  They twirled and jumped and laughed and kicked water in stark silloutte against the dancing water and gave us such a beautiful, innocent and hopeful end to one truly amazing evening.
Here are a good many photos - if I left anyone off my t-shirt, you were in my heart too.

love and light
Annie

Waiting to start:

Lets go!

Walking...

                                      These three just sat there in quiet companionship

                                                     Some ladies provided bridge music :)
                                                       Over the first bridge
                                                                      Frank on bridge

              Me and balloons 

Frank wishing...........

                                                      walking, hoping, caring
                                                           Over the bridge
                                                                   Peaceful
                                                                           Me

                                                                 Balloon set free for Cam

Luminaries..........

For Steven

                                                    For Adrian
                                                  Innocence............

next year again

:)

Light, with love

 

Listen to Dr Druker!

http://su2c.standup2cancer.org/sutv?sid=0&vid=2469

This is a fantastic way of not only describing cancer but of the total determination of this man to really make a difference.  Just look at his face as he speaks..........

Thanks Dr Druker!  I cannot count the number of times I have sent that man a silent 'thank you!' 

He is one awesome man

love and light

Annie 

I have been thinking............

One of the advantages of traveling like we do is that there are plenty of loooong driving days where my mind just sets free on its own journey while my eye and the camera take in the passing scenery.  One of the topics most on my mind lately is the one of "rest in peace" when a person dies.  Well, I sincerely hope I don't offend anyone with these thoughts.  

In almost every culture or religious belief that I know of, one of the main themes is an Afterlife.  I have seen people put letters in the coffin with a person they love, we talk to them still after they have left this dimension - heck, we even yell at them!   We believe they can hear us and sometimes they even come to us in dreams.... Older cultures made sure that their dead were buried with company, servants, tools and food to  make sure they have a head start on the other side....   

Ok - so presuming that the majority of us believe that there is an afterlife, why, in Heavens name (excuse me!) do we want the person to Rest In Peace??  This conjours up the mental picture of a person lying in a coffin with their arms crossed just resting and not having a whole lot of life or fun at all.  Horrible in more ways than 100.  This is in no way what I want for those who meant so much to me while they were still living here...... I want them to be skipping between the planets, having a gazillion "Aha!" moments, grinning at the mischief they got up to here and laughing at just how serious we all still are back here on this ball of rock!  I want them to be playing their favorite sports, laughing with friends who got there first and generally having............yes.............."an Afterlife"!

I want them to be able to be all they want to be, in healthy bodies, with love and laughter and sunshine and beauty and happiness!  Not "Resting In Peace" at all!   Most cultures paint the mental image of this absolutely amazing place 'on the other side', where the colors are brighter, the flowers more beautiful, the fields and valleys amazing and the light just brilliant..... I don't want to rest in peace in a place like this!  I want the afterlife to be a place where the answers are known, or at least to know that the answers were not really important at all and maybe even the question had little value in the big picture.  I want the afterlife to be a place where there is no loneliness or sadness or somberness or pain. I want the afterlife to be a wonder-filled place.   I want to be able to go for long hikes, smell the air, fly with the birds and run with the wind - I want to LIVE!  

So from now on, I am not going to say RIP or 'Rest In Peace' or any such thing when someone leaves us early......... my hopes, dreams and sincere wishes will be. L.I.L.  This stands for Live in Love... Live in Laughter...  Live in Light....  Live in Life!

So, Adrian, Penny, Greg's mom - Carolyn and all others that have gone on ahead of us - I wish you anything but RIP - I wish you................... L.I.L!

love and light

Annie

 

A very sad day...RIP Adrian

Adrian was one heck of a guy....... a young man who could have been angry and bitter and done nothing - and he had a right to do that.  But no, he took life by the horns and really, really made a difference.  His fight was a success.  We all have to die someday, but we don't all choose to live in the manner that Adrian did, even if we have years and years left!  

He was ticked at the successes of this disease and the lack of knowledge about marrow donation and wanted to make a difference.  And he definitely succeeded!  That's not losing the battle at all - that's winning, and winning with love.

Adrian is hero.  He did not ask to be in the position he was in and I am absolutely sure that he had no idea just a few years ago that he would make such an impact on so many people worldwide.   When he was handed this situation - he dealt with it an a way that makes him a true hero - he gave and gave and gave again, no doubt saving many lives that would not have been if he had not been as determined as he was to change something really important. 

So, along with being a son, brother, grandson, friend and more, he was also a hero and a lifesaver.  His actions might well be the catalyst that saves my son or someone else I know and love......... how awesome is that?

I will miss his blogs, his attitude and his ability to motivate people he would never even meet.  Although the world is a richer place because of Adrian, it's definitely emptier now too.  Adrian will be a part of my life, a part of who I am, always.

Kay, words of comfort fail me - I don't believe there are any that would work.  I have tried not to imagine your pain - it's a futile exercise though and  just the thought brings the tears and wobbles.  I hope that I never understand what you are going through and I deeply wish there was a way to make it easier for you all.  My heart is broken for you and Keith and Carrie, and all your family.

It was because of Adrian that we started the combination blood and marrow donor drive in our little home town of Soddy Daisy, Tennessee.  This will be held as part of "Adrian's Army", in memory of Adrian and in honor of Steven.  

The wonderful part of having a combination donor drive is that the "blood people" will cover the cost of all marrow donors that sign up during the drive!  This is awesome as the cost is normally $52 per person to get 'typed' and added to the Marrow Registry.....  So - if any of you are close by on the 25th October 2008, please come and be part of the amazing legacy that Adrian has started.

My heart is heavy with Adrian's passing - I will never forget him or what he has done for me.

Love and light

A double dose to all that love him

Annie

xxxxx

Hello's and goodbyes...

Wow - what a wonderful 10 days this has been!  My daughter and her husband came to visit us and arrived right on my mom's 80th birthday.  We had organized a surprise party and it all came together so incredibly well.  It was a really wonderful evening with all my children in one place, all my family together - kids, mom, nephews, nieces and grandchildren too!

The days screamed by in typical fashion with the shop being very, very busy too.  And today it was time for more goodbyes......... Joleen and Billy left at midday and yes, I bawled!  Sorry Joleen! :) That left me a tad wobbly for a few hours but then I had to pull myself together and start some serious packing.   We are leaving tomorrow morning for about a month on the road! 

We travel the best with no definate plans so tomorrow we will pull out of here around 7am and only then pull out a map and see which road will take us back up to Canada, the Icefield Parkway and perhaps even up to Alaska again. We never really know where we are going which makes for some lovely surprises and, of course, many many photos.

So Steven and Laura came around to get all the goodies out of the fridge -  everything that would not keep, some chocolates and jerky too  :) And then that goodbye.  And the last goodbye today, after both my sisters and my mom too, was Lisa-lu who was already in bed at 9.30pm!  

What happened?  The kids always fought so hard to stay up late at night and us parents needed early nights, now if I call the kids after 9.30pm - they are asleep!  It makes me laugh.  And here I sit up till midnight many, many nights.

Steven looks good, tired but good.  He has his new schedule for cbc's and pcr's sent to him and I am absolutely determined not to worry at all while on the road. 

I am SUCH a fortunate mama.......... three amazing, wonderful, lovely and caring children all with equally wonderful partners and all so happy!  I really am very blessed and so thankful.

Here is a photo of us all together........ I am really so proud of them all.  Thats my mom on the left - what an amazing lady that is!  Love you all.. Lotsa :)

Love and light

Annie

The results are in.......

This time there are two different sets - one is the 'old scale' and then we have the new "International Scale". Of course my eyes caught the new IS (International Scale) numbers first, which are higher (but not worse) than the readings of the OS (old scale). I will put in a better description of the changes below

And again, he has bounced a bit... last test was 0.04% - this time it's 0.079%. 0.14 on the NIS last time and up to 0.33 this time. Big sigh. The trend I see is that its going around and around in circles...... This seriously makes me think about his diagnosis - and yes, I know that I am probably following the wrong road....... but his first pcr test done was 0.13646 at Vanderbilt and his next was even lower than what it is today - 0.0286%. So in the big picture there is NO change at all!

I know it's not bad. I know it's nothing to run in circles and pull my hair out about or lay with eyes like saucers in the middle of the night. I know we need to watch for a trend. I know. But........ it still makes me wonder, still makes me look at the results and see that his results have hovered all around the same area for over two years now. It just makes me wonder - for now, thats all.

Of course this opens doors in my mind and I wonder how to get a second, third or fourth opinion on this without being rediculous. I know that some people will have a postive pcr reading even if they don't have cml. Could it be that ..........aaaaaaarrrrrrrghhhhhh! There is no way to find out without stopping the meds and risking SO much. So I will just have to stop going down that road. Seriously, it does make me wonder though..

Here is the better explanation of the new vs the old way of reporting PCR results - this comes directly from the paper sent out with the result from OHSU:

Effective February 2008, BCR-ABL quantitative RQ-PCR values will be reported as both:
a) a raw transcript ratio (BCR-ABL to control gene); and also
b) in units of the 'international scale' of standardized measurement that has been recommended by an international consensus of CML experts.

The international scale (IS) defines a BCR-ABL level of 0.1% as being equivalent to a 3.0 log-reduction from a standardized median pre-treatment baseline value (that is, by definition, equal to 100%). This 0.1% international scale level is, by definition, a 'major molecular response" (MMR) as established by the IRIS study (International Randomized Study of Interferon and STI571).
In IRIS, 100% of the CML patients achieving an MMR within 18 months of starting imatinib therapy were free from progression to accelerated phase or blast crisis at 60 months of therapy.

Special thoughts to Kay and Adrian and family
Love and light
Annie

Still waiting..........

So today rolled in and rolled out with no results at all.  Steven went to the doctor, but apparently the PCR test results have not reached the oncologists office, even after it being a week since OHSU sent them out.  This is very, very tiring.  It wears one down and it takes a tremendous amount of energy to keep pushing out all the thoughts that naturally crowd in this close to getting the results.

I wonder if the doctors office even has an inkling of the stress and tensions caused by the waiting time?  No matter how I want to believe that I am doing wonderfully - I can feel it in my hair roots that I am 'frilly' around this time.  There is no doubt that I am doing better at waiting, and have been very fortunate to stay very busy with many  different things this time, but it seems inordinately long to have to wait for a test result!  Steven's blood was drawn for the PCR on the 15th of July and overnighted to Oregon.  This is a looooooong time to wait! And then to wait some more.

Ah well, what is - is.  I took this picture of doglet Allie keenly watching a Luna moth (ever so kindly found for me by Kevin, the Lawn Boy - Thanks Kev!), this evening and wondered at were I had seen such concentration on a face before..............mine!  In the mirror in the worst days of waiting.  That determination not to take ones eyes off cml for even a second in case it flies out of control.  Thank goodness it's not like that anymore.

May it stay that way.  Please.

So maybe tomorrow we will know those long awaited test results.  OHSU is going to fax them to the oncologists office and hopefully they will call Steven with the results before the weekend.

Love and light

Annie

Reaching for the moon.............

...............  now to find the falling star to lay the wish upon.

Busy days

Well, I had the distinct privilege of having this blog locked! They said that because I had "been identified as a spam blog" that I had to request a review and after two days I would be unblocked.

So I requested it and was duly unblocked. It's totally amazing how many words I had in my head when I could not post, how much I had to say but as soon as I saw that I was free to post on there again - woooosh - gone are all the words!

This is a very busy month. My youngest daughter and her husband arrive for a 10 day visit on Saturday, my mom turns 80 this coming weekend, and a tremendously agile and spritely 80 she is too! and then we leave for Canada to see if we can cath those northern lights (aurora boreallis) in the last week of August sometime - as soon as we can get packed up after Joleen leaves.

And Steven has a doctors appointment on Thursday this week when he will be given his PCR results. I have resisted calling and asking for them and will not be going to the appointment with him either. And amazingly, I am ok with both. I just hope that the results are back already or that hissy fit that is now dormant will grow and feed on me again. So, I am going to keep being cool and calm and otherwise occupied until the second he walks out of the doctors office with the results.

I am getting much better at dealing with this waiting time and my sincere prayer every PCR time is that I keep having reason to be cool and calm about it all.

We are organizing a marrow and blood donor drive here that will be held on October
25th, about a month after we get back from Canada. This is part of Adrian's Army - you have read his blog, right? (http://baldyblog.freshblogs.co.uk/) If not - go there and leave a message, send a prayer and a happy thought.

Adrian is the reason I have shifted my rear end out of neutral and am doing this donor drive. He has achieved incredible things with awareness about the donor drive, in the Uk, and just from reading the comments on his blog, I can already see that he has and will be adding substantially to the donor registry.

Now - this is how it works........... a donor over there in the UK could save the life of someone over here. If Steven ever needed to go to transplant, he could find a match because of the effort Adrian has gone to literally in his dying days. This gift is incredible and can only be repaid in one way - help add to that Marrow Registry too! It's all about balance........

I have the need and responsibility to Pay Forward, make a difference. If you can, tell someone that its not a terrible, horrible, awful process to donate - join the registry, or even organise a donor drive in your community.

Normally it costs $52 to join the Marrow Registry, but I found out that if we put together a combination blood and marrow donor drive, that the fee is waived for those that register. I simply could not pass up this opportunity to try to make this happen. There will be educational articles in the newspapers, and hopefully the tv and radio stations will play along in getting as many people to come along and also be a part of Adrian's Army.

I never would have dreamed that one of my children could possibly need this procedure one day. And I remember well that day when we sat at Vanderbilt under the sign that read "Bone Marrow Transplant Section". My blood still curdles at remembering those thoughts and fears. None of us match Steven and so in a way it is a selfish act to do this drive, but at the same time, how wonderful would it be if by doing this, someone's life is saved?

I know that cancer in one person affects a whole community, literally, and by having a drive like this I believe the community can take a serious stand against cancer too. I think its phenomenal that by the simple act of registering here, one could save someone in another country or right next door. I wish I could do this for Adrian.

Ok - thats my burbling for the day.

Love and light (special dose for Adrian, Kay, Carrie and Keith)
Annie

bouncing days

I swore I would not become like this...........................besides, I have always been a 'cat person' rather than go moggie about a dog!

This week especially, I have been watching little Sophie who is now only 6 months old, hopping her way through the days. This little dog does not run, she hops or rocks, keeping her back legs together and bouncing along wherever she goes. She is not slow at all and gives Allie a serious run for any toys and tidbits..

She bounces around with such unbridled joy, ears flopping, rear end swinging around the corners and I swear she has a smile on her face! She has no respect for the pee pee pad at all, nor is she particular about what she considers a toy. This has made us lace all electric wires with hot pepper sauce.

This little bundle of doglet bounces around, pleased with herself at whatever she does or does not do. She will pee on the floor right behind me and bounce around like tigger on a big spring, panting for her treat with those sparkly little eyes and wagging tail! Today I caught her running off right after actually peeing on the pad and when I called her back for a treat, finally, I could almost hear her thoughts - 'who? Me? Really? REALLY? Whooo hooo!" And yes, she came back on a 'super bounce'.

What a way to live your life - so assured that you are loved, accepted, ok, the right shape, the right size that even though you walk funny, you are still loved, played with and plainly adored......... Right now matters, not yesterday, not tomorrow, heck - not even an hour ago!

Ok - so maybe I am concentrating of different things lately - but it sure makes the pcr wait time pass by with a gazillion smiles.

love and light
with a special dose for Kay, Adrian and all their family and friends..
Annie

One little ant........

And so the waiting has started again, but this time its totally...........well - I have honestly not even thought about it apart from every now and again feeling mildely surprised that I have not thought about it. Interesting, and I am sure it will change sometime - but while this peaceful state lasts, I am just going to enjoy it.

The other day I was going through some old photos and looking back over the years pre cml. I can only be incredibly thankful that none of us knew this was coming down the pike - all those years of smiles, casual living and belief that we were all in control of our future.

I have many feelings when looking through those photos. I tried that just over a year ago, and could not look at photos of Steven of years past without tearing up and actually hurting inside. Now I find that just have this deep, base feeling of 'I cannot lose this child', but that I can look at them all and smile again.

I never thought that I would be affected by looking at photos like this, especially as all is going well, and was even a year ago. Just last week, before I looked through the photographs, a lady came into the store and was telling me that she had lost her mom a little over a year ago and it was only now that she could look at her photos again..... now I understand. Funny how much we dont understand until it directly affect us personally. Like saying that 'when I have kids, they will never ever walk around with unbrushed hair!" Ha! I really appreciate those times when I find new understanding - each one is a lovely moment and a deep knowledge that I am truely growing inside.

Isn't it strange how when we look at a picture of someone from long ago and we miss them - we reach out and touch the photograph, stroking it and not wanting to break that contact. Makes taking those photos even more important in the good times.

The the next two months are going to be busy months..... its my mom's 80th birthday on the same day that my daughter and her husband arrive from California for a 10 day stay. During this time I am going to be very busy orgainizing a blood and marrow donor drive to be held in mid October as well as still working in the shop and getting in as much time with my youngest as possible.

When Joleen leaves to go home, we leave for another road trip. I have this big urge to see the northern lights, Aurora Boreallis, again. So we are headed up to the Icefield Parkway, Canadian Rockies area to see what we can see. We should only be gone around 3 - 4 weeks this time as there will no doubt still be much to plan for the donor drive.

Ok - more about the donor drive. I have wanted to make a real difference and I think that Adrian has done a totally incredible job of hightening awareness and changing things that will save many, many lives, beyond even his expectations. His actions might even save Steven's life one day if he ever needs a marrow transplant one day.

So - what to do? Pay Forward in the best way I know how!

We already have the place to do this - the ice cream shop, Kays Kastles, right next door to us has agreed to let us use their parking place for the blood bus and a few tables inside for the marrow donors. This is a big step out of the way and now we just need to tie down a definate date and get the ball rolling. I am hoping to get the radio and tv stations heavily involved too both before and during the day and already have the local newspaper lined up to do an educational article and then hopefully another one the week before the drive.

If I think of what kind of impact I would like to make with this, obviously I want the biggest and the best response possible, but I have to look at it in a way that even if only one person gets added to the marrow registry - it might just be that one that will save a life and all those around that person.

The cost of getting on the marrow registry is $52. BUT - if we hold a combination blood and marrow drive, the registry fee is waived! So I really hope to use this opportunity to get as many people on there as possible who would otherwise not have done it because of the fee.

So - as we all know, one little ant cannot do much on their own, but when we belong to an army, anything is possible.........and I now consider myself one of "Adrian's Army" and know that as long as we try, we will make a difference in some way.

Thanks Adrian, through your actions, especially in the face of your situation, you have kicked my butt into action.... I will forever be grateful :)

If any one has any ideas, advice or is close enough and wants to help and be a part of this - please contact me, leave me a message, note or rattle my cage in any way you know how.

love and light
Annie

Living your Dash.....

“How Do You Live Your Dash?”

I read of a man who stood to speak,
At the funeral of a friend.
He referred to the dates on his coffin,
From the beginning.... to the end.

He noted that first came his date of birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years.

For that dash represents all the time
That he spent alive on earth...
And now only those who loved him
Know what that little line is worth.

For it matters not, how much we own;
The cars... the house....the cash,
What matters is how we live and love
And how we spend our dash.

(thanks Kay)

love and light
Annie

Feeling creative.......

..........can you tell?

These are quiet days in my mind. Lovely full and lovely days. I have big plans to share soon, but for this weekend, I am going to kick back, relax and enjoy the wonderful weather - and plot and plan just like these two seem to be doing :)

Love and light

Annie