Monday, May 28, 2012

May 28th - New PCR results

I'm actually a little behind, I never did post my PCR results from back in February. The PCR test takes place every time I am down at OHSU, or 4 times a year.

The tests in February were somewhat of a small shocker. While my PCR was weak positive (same as before), and FISH was clean, my cytogenetics which hasn't had evidence of CML since 3 months into the trial, suddenly showed 1 CML cell out of 20. Given the sample size, it's quite shocking statistically to have such a small sample show a CML cell. Both my previous and current doctor assured me it was a fluke, since the other two tests were not consistant, but the emotional side of me struggled with what it could mean. So, fast forward, the PCR test in May had some added significance, since it would show if there really was more active leukemia, or the fact that it was a fluke.

The May PCR was released during the automatic release process in the middle of the night. I woke up very early for some reason, and by routine this time of the year, I checked my email on my phone. And sure enough, there was a message that there were test results waiting for me at the OHSU site......

Some day I will take my blood pressure during the keystrokes of going to OHSU.EDU, and finding the test results. Nerve wrecking is an understatement. By habit, I know exactly where on the test to look, and luckily the numbers or words that I want to see, are in the first few lines....And there they were, the results were UNDETECT. A huge relief obviously, it confirms that May was a fluke, and even more importantly it dropped from last time. How much is almost impossible to know, since I am under the threshold of the test. For now, I am going to cheerish those results, especially in light of an upcoming vacation that I have been looking forward to for some time now.

Monday, February 20, 2012

Another birthday - turning 44....

Today I celebrate with mixed emotions. If I had been diagnosed with CML about 12 years ago, I would have been given a life expectancy of 3 years...Well, 3 years passed about 2 months ago, and I'm very much alive and kicking...Today I give thanks to Dr. Mauro, Dr. Deininger, and of course Dr. Druker who lead the revolution in the change in treatment. I am over 2 years on Ponatinib, and for all we know i am still doing great. Of course, I had my appointment last week and I am waiting on the latest results to come in. Dr. M is willing to bet that I am still in CCR and things are stable, but it's still nerve wrecking non-the-less.

I also think a about Tyler, a lot. I think my life would have been very different without Tyler in my life. His encouragement, him leading the way, and above all, his bravery facing CML inspire me every day. We miss you T-Bone, you'll always be in our memories

Tuesday, January 3, 2012

Turning a new page in this journey

Towards the end of 2011, I had gotten more involved with informally helping other patients. It all came from wanting to pay forward, all the support and help I had received from the likes of Beth, Yanni, Annie and Mandy/Tyler. I don't know where I would be without such incredible individuals that always took the time to listen, to offer up suggestions, and just be there to lend a supporting shoulder. I had been searching for a purpose, something that would allow me to direct my energy that I was using to find a solution to my problem, and also turn some of my thoughts into positive impact on other patients or care givers.

In the fall, I learned about the National CML Society. An organization who’s single purpose is to provide support to CML patients and caregivers and advance treatments and making connections between health care providers and patients/caregivers. The more I thought about it, the more I felt that the organization was exactly what I wanted to be involved with. I had informally benefited from some of the same services they provide, and there is a need to help patients/caregivers organize and make it easier to navigate everything CML. To make a long story short, I started getting involved, and since I was one of the first from Washington, I become the Washington state representative to the National Organization. You can learn more about NCMLS here:

My involvement lead me to attend a patient summit in Portland, and then later was asked to attend one in California. Both of the events was an opportunity to connect patients/caregivers with others, as well as introduce them to the NCMLS. In those two events, I met some wonderful people with powerful stories, and some were truly inspirational. Like the women in Portland who has lived with CML for 19 years, or the young 20 something guy who works for Disney in California and had a transplant 3 years ago. It made me aware that we are all over the spectrum in terms of our journeys, but we share some common paths that all of us go through. Always in the back of my mind, is the loss of Tyler, and my greatest wish is that nobody has to go through that ever again.

Around the same time, I was asked to do a story for Powerfull Patient, an organization focused on helping patients and caregivers through knowledge. The interview took place during the summit in Portland, and the finished product can be viewed here.

So my new mission, is to lend a hand to patients or caregivers who may need someone to listen, share what I know, and just know how to direct people to someone who can help when needed. Part of that will be reaching out to the Washington patients I have informally met, and start setting up some connection meetings in the area. I will also start using this blog, to start publishing more about research and resources available.

Oh, on another note, my PCR came back from my December visit in Portland, I am back to Weak Positive. I surprisingly wasn't too shocked about it, when you get to a low level, it doesn't take much to fluxuate from undetectable to weak positive. Of course I will hope to go back to PCRU next time, but my main goal is to be low and stable. Keep the course.

Happy New Year all, may this coming year be filled with happiness and great health !