Wednesday, March 29, 2017

Powerful Advice From A Dying 24 Year Old


Honestly I don't even know how 2.18 is possible. That's my creatinine number, reflecting kidney health.  Recall at one point it was over 8 and I had a kidney doctor who wanted me to do dialysis. Never did. And now look, my kidneys are functioning like a well tuned machine. The marked improvement began when I started darzalex in November. And my other numbers continue to shine. Yay darlazex!!!!

Monday, March 27, 2017

Free Educational Event about Ninlaro

Ninlaro is a newish oral treatment for myeloma. There's a free educational event on April 22 in Costa Mesa, CA. So if you're in Southern California and wondering about Ninlaro, this might be the thing for you.

Tuesday, March 14, 2017

Kilimanjaro Photos

I've been back home about two weeks. from the Kilimanjaro. It seems like a long time ago. But then again, the memories and the time with an amazing group of people remains fresh.  I haven't had a chance to go through all my photos, but for now here are a few of them. I also want to say that the support and words of encouragement I received before and after the climb have been amazing and mean more to me than I can fully put into words. Thank you!

Our entire team, including porters and guides. The porters and guide made the trip possible.

Our team in front of what are called the Dr Seuss trees.

Me and my fellow patients at the end of the climb. Gary, Terry, April, Nancy and me.

Me on day 2. Still relatively fresh

Friday, March 3, 2017


I'm home. What an adventure. The following is a note I sent to folks via my donation page. It's a summary of the climb.

Dear friends and family,

I and the team are home safe and sound. Thanks to your generosity I raised over $16,000 and the team raised over a quarter of a million dollars. I knew the experience would be life changing and now that I've been home for 2 days I am beginning to be aware of how truly life changing the trip was. I've made friends who I'll be close with forever.

Physically and mentally it was a challenge like no other. I struggled on day 1, feeling like Katz in the book A Walk in the Woods by Bill Bryson. Starting on day 2 and all the way to day 6 I improved and felt better each day and got into a real groove. On summit night we started our ascent at midnight, I got up to about 16,000 feet, but couldn't make it to the summit. Seemed like the right decision for me at the time. In hindsight, I am disappointed in myself for not pushing through the pain and negative thinking. I am also disappointed that I might have let down the team and all of you.

Nonetheless this was an amazing experience and we showed that cancer won't stop us from pursuing adventures and challenges. Today I am right back to chemo, adding to the processing taking place inside my head. But I feel great.

Again,a huge thank to you all. Your kind words and generosity were absolutely motivating and inspiring.


You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...