Thursday, November 26, 2009

Thanksgiving thoughts.......

First, I hope you all had a wonderful thanksgiving. Most of you that read this blog have been in contact with me via email or phone and I thank you all dearly for enriching my life, for making me stronger, for making my life brighter. I would not be who I am now without each one of you, so - thank you!

Each year rolls around and Thanksgiving arrives just as the cold weather makes itself felt..... and then I start thinking about the things I am thankful for and realize that the list is indeed very long. Each time I create this list in my mind, it's people that are at the top. No matter how much all the other stuff makes life easy and fun and nice, without the amazing people in my life - it's all nothing.

And then I think about how far back I need to go..... should I be thankful for those that have hurt me in the past, created temporary havoc or who have nearly made me break? And each year I think I should. I am deeply grateful that they made me stronger and more determined to be better, to do better and to move on. Grateful that I have been able to leave them behind and not waste time on anger and remorse and grateful that through these growth spurts of mine, my kids have all benefitted and grown stronger too.

I looked at my brood today with such great pride and joy. There are three amazing young people and their partners and children all interacting in a lovely easy way, caring and laughing, teasing and watching out for each other.

Once again I realized just how fortunate I am to have my family intact.... so many people I know just don't have this anymore. Yes, those who have died live in our hearts, minds and memories - but even I know that this would simply not be enough for me and that hole in the family would always be felt. There is nothing I can say that can change those feelings, but I know that it makes me treasure what I have even more, and more deeply.

My life has become so much richer over these past three-and-something years since Steven's leukemia diagnosis and much of it is because of the people I have met who are also dealing with cancer in some way or another. But its not all directly because of that.......

Steven's diagnosis shocked me to my core, rocked and nearly capsized my world - but again, it's the really tough times in my life that have made me grow the most - and this time was no exception. I have learned that life really is too short; that those are no longer just wise words in a power point presentation or something. I have learned that even through the tears, there has always been someone or something to be thankful for; that to give is the very best way to drag myself out of a depression and that once I realized that I really had no control, my only 'job' was to live my life so that I could wake up the next day and actually like myself.

I have learned to let go many things, to find joy in small things, to mark each day as an adventure, a challenge and to "just be". Just be everything I can be at that moment. That also means that by sitting on the couch and relaxing is also being 'useful'....... to me!

The lessons I have learned in three short years have, in many ways, set me free. Set me free to be everything I can and want to be. I know this has made me a happier person, more easily approachable and a nicer person too...... and I see that this has had such a positive impact on my three young adults.

Now I hear myself rambling.......... so.... this year I am deeply thankful for Frank and his ever present support of what I need to be totally me, and for us to be a solid us; for my simply amazing children and their wonderful partners and lovely kids. I am thankful for my Mom who is one incredible lady that has taught me so much, who has inspired me and given me strength to deal with the challenges in life. I am thankful for an awesome sister, Kate, who has promised me a "ride on a magic carpet"! and who has been a friend to me through everything. Dankie sis! And then to all my friends, those right here close by and the many that are spread all over the world... I treasure all of you and you have all become a part of the foundation of who I am and helped make me a better person.

And so another Thanksgiving Day has come and gone again .........I wish that we all hold on to these thankful feelings and thoughts and not wait until another year has passed by before telling each other these things.

love and light

Thursday, November 12, 2009

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 RegistrySM 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.

Tom_Wilhelm-marrow_donorGetting 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

October 06, 2009


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.
Send A Holiday eCard
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.


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

Tuesday, November 03, 2009

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... 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

Monday, November 02, 2009

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


Researcher Behind the Drug Gleevec

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


    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.


    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