Friday, April 30, 2010
Recently I was asked by Wegohealth.com to do an online interview...... here it is.
Be sure to look around on their site - there are a bunch or really interesting articles and help.
Here is a bit more information and some links to look at too. Please see if you can be a part of this group - its always a wonderful thing when people can help others through whatever it is in their lives. This is not only regarding CML, but covers many other health issues.
Once we are back home again I will be more involved with them too, right now I have just run sheer out of time!
love and light - and laughter! Thanks Esther :)
Upcoming CML Insight Groups:
In our ongoing mission to empower Health Activists to help others, WEGO Health is hosting online focus groups on Tuesday, May 25th for people who are active contributors to the CML community online. We’re looking to learn more about the CML community, what folks are talking about, and what kinds of tools and resources might be helpful. These groups are being held on behalf of one of WEGO Health’s sponsors.
All participants will receive a $25 Amazon.com gift certificate, and WEGO Health will make a matching donation on their behalf to the National CML Society.
The sessions last one hour and are held remotely—participants can join from anywhere in the country, you just need to be online & on the phone at the same time. Groups will be held at Noon, 4PM, 6PM and 9PM Eastern Time.
If you’re interested in participating on May 25th, the link below will take you to a short survey to see if the group might be appropriate for you:
empowering Health Activists to help others
Spotlight on: Annie, author of the blog Living with CML
Active in the CML Community since: My son Steven was diagnosed March 2006.
Occupation: I fix, build, repair, re-program, de-virus, and upgrade computers
What do you do when you’re not raising awareness about CML: Photography, travel as much as possible, catch up with family and friends
What prompted you to start blogging after you learned of Steven’s diagnosis in 2006?
Writing has always been an outlet for me. Most times when you go through something this huge in your life, others cannot possibly “get it” without having gone through the exact same thing. So no matter how my family and friends wanted to help, they couldn't. Writing it down became a way to sort through and get rid of some of my frustrations and feelings of horror.
It was a very emotional and scary time and to tell the details over and over again as family or friends asked, took a lot out of me. Blogging was a way that I could tell it once and everyone who wanted to know could get the information. It also made it easy for those who did not know how or what to ask to keep up to date and deal with it in small chunks at a time.
You recently printed out a few copies of your blog and reread it from the beginning—did anything surprise you?
Oh yes! It really surprised me just how much I’ve written, what I put in and some of the things I left out. It also made me smile at how I would interpret a photograph according to what was happening with Steven or the thoughts and feelings in my life at that stage. I was in such a fog in the early days; I am really glad that I wrote it down or much of it would be forgotten by now.
It surprised me that in some ways it feels like just yesterday that we lived all that, and that the emotions still lie really close to the surface when re-reading the blog. At the same time it feels like a lifetime ago. I can now see that it’s not only a diary of Steven's CML progress, but of my growth, acceptance and how I have learned to live, give and care about so much more than I did before.
It surprised me just how much my focus has been able to shift from CML being all encompassing, to enjoying life so much more, with CML just an important part of it. If someone had told me back then that this would happen, I am sure I would not have believed it. It is also very interesting to realize just how much fuller my life is with everything and everyone that CML has brought our way. Our lives have really been enriched and strengthened over the past four years, and holding the blog in my hand in paper form really drove that home for me.
How has your blog changed since you started it?
The blog started as a horror story for me. Now, after seeing it in print and reading it again from the start, I see it as quite an amazing love and life story. It’s a story of the deep love and admiration I have for Steven and his wife, Laura; of the love and patience of my daughters, Lisa and Joleen, and my husband, Frank, while they waited till my focus could properly include them again - it took a while. The love and care shown to me from people all over the world while they were and are in their own world of pain has been absolutely incredible. But it’s not a story that is by any means over – every day contact with incredible people from many different parts of the world keep adding to this huge circle of support that is always available. This story is not only being built in the sad and bad times, but most definitely in the celebration of good times too, despite cancer in our lives. Perhaps because of it. The early words and memories of the blog are soaked with fear and loneliness. It’s so very different now, so much lighter, so much gentler.
Do you find there are particular challenges blogging as more of a “caregiver” than a patient?
Oh yes. For starters, sometimes it feels like I am whining about something that is not even mine. Someone said to me about a year after Steven’s diagnosis: "He is doing fine so have no reason to worry, and this disease is his, not yours – let it go!"
This is true, but as a parent of a child with cancer, life is just not that simple any more – we cannot just close that door to worry, it has to work itself closed over a period of time. I am also not really Steven's caregiver – that is primarily Laura's role and she is totally amazing. She keeps a close eye on him every day and deals first hand with the side effects, frustrations and worries that go along with this all - I would love to tap into her mind and really understand her role.
I am always aware that I have no idea what or how Steven (or anyone else with CML) is coping with it, but I can write about my feelings and struggles in learning to deal with the fear and changes that a cancer diagnosis in my child brings. In a situation that is really good right now with Steven holding on to lovely low test scores, it is a wonderful, and almost free, place to be able to write from.
What do you wish someone had told you when you first learned that Steven had CML?
That they had made a mistake and that he just had flu…
I am not sure that anything anyone could have told me would have sunk in or made a difference when we first learned that Steven has leukemia. Getting Steven to see Dr. Druker about five months after his diagnosis was the very best thing we could have done. Dr. Druker instilled such peace, hope and normalcy in us all. After that meeting, I listened to my son sing as we drove from Portland to the coast. That’s not an ordinary occurrence and it was truly a beautiful noise! That was a turning point in all our lives. A good one. I wish a “Dr. Druker visit” on everyone with CML.
What’s the most common question people ask you about CML?
People don’t really ask anything particular – they read the marrow donor plea on the shop wall, and sometimes ask if that’s our son. It does not seem to be widely known that there are a quite a few different types of leukemia and they are often surprised that CML can be treated “as easily” with a Gleevec pill a day.
Normally, after they read or hear about Steven’s diagnosis, eyes go soggy, heads tilt and I can almost see them scrabbling for words. I quickly reassure them that he is doing great, that he will be ok, that he is going right on with life and I tell them how important becoming a bone marrow and blood donor is.
Most times, talking about Steven’s diagnosis opens the door to them telling me about their own cancer experience and so often their words tumble out in a manner that shows that even years later, they needed to share their story again. It’s fascinating and wonderful and has taught me that almost everyone has a story of some kind that needs and deserves listening to.
Is there an area of CML research that has you most excited right now?
Yes, there are a few very interesting trials going on that I have so much hope for. The people who are in these trials are the forerunners to a cure for Steven and the many other CML-ers out there. They have my utmost admiration and the deepest possible thanks – each one of them. Every step forward towards the possible cure of CML is reason for excitement and hope and it’s absolutely wonderful to see just how much research is being done in this field.
What has helped you the most during the past four years?
The most helpful thing has definitely been the fact that Steven is so open with me about everything regarding his CML. I cannot imagine not knowing a test result, or when his blood tests are done. I know that either he or Laura will come to me with any worries or questions they have, and this really does free me up to get on with my life without creating those dreaded ‘what if’s’. It allows me to look at Steven with fewer ‘mama-scans’ and see CML as only the very small part of him that it is now. In the first couple of years, I have to admit to thinking first of CML and then of the person whenever Steven came through the door. Now when he works with us on Saturdays, the whole day will go by without any worry-thought being tied to him – just wonderful. I could not have reached this space in my life, or been able to put CML aside to this extent, if he and Laura had not been willing to share it all. I know my relationship with Steven would not be as close as it is now if things had been any different.
The online support groups were absolutely critical to helping me become more even keeled and especially to learn everything I needed to about CML. They were particularly important in the first two years. They really were my 24/7 help line that kept me going then. They’re still a constant source of information that comes directly from personal experience and an incredible amount of knowledge from all over the world. The ability to post a question there and get a response from someone who is going through the same issue is priceless.
The people that I met through there and through my blog are all a huge part of who I am today and because I am ok, I firmly believe that Steven is able to move on in a more whole way too. All these people, and so many more, will always be a part of our lives.
What’s the best feedback you’ve received since you started Living With CML?
It’s all been the best – from the moms reading what I write and finding help in the words, their stories of hope, heartache and help; the people who write just to make contact even for a little while; others that I have met on our travels around the USA – all the best.
The firm friends that have been made through CML and the continuing contact through the ‘frilly times’ into the more gentle and kind days—it’s a really great experience to follow someone through transplant and into the years beyond and to share the good days with them after so many really rough days.
Hearing that someone has seen just how important it is to let their mom know how they are doing and feeling, and that this helps their mom too, is such a bonus. To hear that a relationship between people has been improved or repaired because someone read how it helps me to know all the details, is phenomenal. It’s life changing.
So many people have shown us so much caring and each one is as special and important as the next. It’s an incredible feeling to know that just writing about my emotions actually helps others.
I feel deeply honored that I have been able to help in this way.
Monday, April 26, 2010
My heart is broken and the tears wont stop... She was only 2 years old but developed so many different problems - or maybe they all just hit her at once - but the last few days of her life she was mostly scared, totally blind, unable to walk and in some pain.
This did not lessen the pain of both making the decision to have her put to sleep, nor the act of carrying through with it.
From the minute we learned that she had not only suddenly gone totally blind but was hit with all the other neurological problems etc, our world changed and became even shakier again.
She was one heck of a doglet! From the start she tugged our heartstrings, she made us laugh a million times with her strange little ways. She made us softer, more caring, more loving and ......well, she filled our days, and nights too, with her presence and the incredibly funny things she did. She felt like those microfiber socks, all soft and gentle and it was just awesome when she chose to come up on the couch and cuddle with me in the evenings. She hated the cold and the wind and when she ran, her ears flopped around like schoolgirl pigtails. She would run around and around the shop, breathing heavier and heavier and then stand and look at me with what looked like a huge proud grin on her face, just waiting for that treat. She did not walk like a normal dog, but hopped like a rabbit and had this very unique movement like a rocking horse. She was Sophie, Sophie-do, Sophs, Sweetie-girl and Chicken..... and so, so much more..
What really stuns me, apart from the very obvious-ness of the incredible feeling of loss, is how empty, how quiet the house feels. I remember when we got her how busy the house suddenly felt..... she brought so much to us all and now... well, its gone. She's gone. I keep glancing over to her bed in the lounge to check on her, almost called her at suppertime, still find myself watching the clock so that I can take her outside to pee.... What a huge space this little girl doglet has left in our lives. She lit a spark in our life.
I hope there is a huge open beach somewhere out there for her, where she can run and try to tame the waves as she did on both coasts of the country, I hope she runs without pain and I hope she sees as clearly as day again and is not scared anymore.
I miss her so much.
She loved checking the side tables for goodies to steal.......
Not moving around anymore......Allie checking on her yet again
Sophie - I hope you are running free......bye bye, my girl
Friday, April 23, 2010
OHSU's cancer doctor Druker named Portland First Citizen
April 21, 2010, 3:46PMDr. Brian Druker, a leading cancer scientist who heads Oregon Health & Science University's Knight Cancer Institute, was given the Portland First Citizen Award at a banquet Wednesday.
"I am incredibly honored to receive this recognition in my own community," Druker said.
Druker is one of the leading figures in targeted cancer therapy, the effort to find drugs that more specifically attack the biological flaws driving cancers while limiting damage to other, healthy cells.
He led the main human trials that proved the effectiveness of one such drug, Gleevec, which has dramatically improved the life of people with a blood cancer called chronic myeloid leukemia, or CML. Before Gleevec was approved for sale in 2001, close to a third of CML patients died within five years of diagnosis. Now, that death rate is closer to one in 10, and many die from causes unrelated to cancer. Gleevec is also being used against several other cancers.
Druker got his undergraduate and medical degrees from the University of California at San Diego. He came to OHSU in 1993 from a research job at Harvard, and was named director of the school's Knight Cancer Institute in 2007.
The First Citizen Award is one of many recognitions for the Minnesota native. Last year, Druker and two other scientists won prestigious medical science prizes from the Albert and Mary Lasker Foundation for research that, the group said, "provided a new paradigm for cancer therapy." He's previously received a lifetime-achievement award from the U.S. Leukemia and Lymphoma Society, been elected to the National Academy of Sciences and named a Howard Hughes Medical Institute investigator.
The Portland Metropolitan Association of Realtors gives the First Citizen Award each year "to honor civic achievements and business leadership within the community." Sponsors of the award banquet include The Oregonian andRegional Multiple Listing Service, a real estate database.
Wednesday, April 07, 2010
So - what to do about the possibility of losing everything? Print it! Do you know how many pages this thing is? Wow. I spent days turning it all around, the very first, very scared blog entry right at the top and 315 full size 8.5 x 11 inch pages later I reached the last blog of the first four years! Now its all sorted and ready to print, apart from the need to design a front and back cover. I am going to print two - one for Steven and Laura and one for me. It's like a life story.... a really good one too.
Reading through some of my earlier blogs and then reading the blogs of other people that have not been as fortunate as Steven in his good response to his meds, makes me see how incredibly fortunate I have been and am. I have so much to be grateful for and apart from Steven's health my greatest blessing really has been the people I have met along the way these past four years. These are the people who stand with me, sometimes leading me, sometimes pushing me and always alongside me at the same time.
These amazing, strong, wonderful and incredible people are of my most firm friends - even if most of them I have not met and probably won't ever meet. I will always be deeply thankful to every one of you, I certainly could not have done this without you. It really does "take a village".
Talking about cml and tests and things..... Steven's next blood draw is on the 27th of this month. The time has whizzed by so incredibly fast again but its always such a breath of fresh air to call OHSU to order the kit. The people who work there are amazing - I always get off the phone with them with a smile on my face, sending them happy thoughts. And this time the wait for the results will be a little bit longer for me. Steven will get them on time but this time I will be quite happy to wait the extra couple of weeks..... why?
Love and light
ps - you can follow our Costa Rica trip at: www.travelbaggs.blogspot.com