Not a waste

Warning: Looong Post.

The last three days have been very informational. And, I feel as though I know my options fairly well right now. So, I will share my knowledge with all of you...

Here is what we're looking at:

One) Radiation is not an option right this second. The disease turns out is in my spleen, and a few nodes outside of my spleen. Radiation is primarily used for localized (in one spot - that's for Kate Hansen!) areas in the body. You can do complete radiation to the entire body, but we have other options before we pull out the Rads card. And, I'd like to explore those options before I hurt my good cells :) and bone marrow through radiation.

Two) The other option given to me is a min-allo transplant. A mini-allo transplant would be the same thing that I just went through as an auto transplant, except instead of receiving my OWN cells, I would receive a donor's cells. The issue with an allo transplant is, that it is much more risky. And, the aftermath could result in lots of complications (GVHD or even death). GVHD is Graft verse Host disease. And, it's honestly a horrible way to die. Basically the donor's cells do not recognize the host (me!) body. Therefore, instead of eating away just the cancer, it can eat away the good cells or organs too. The cure rate for a mini-allo is 10-15%. The chance of receiving GVHD is 15-20%. It's a scary thought, but still in the back of my head. And there are some great success stories out there (like Duane and Eric) who are both young men that are totally putting fear aside and going for their shot of a cure, because that was the right step for them. But a mini-allo takes a lot of effort, and the doctors (at least at Dana Farber) feel that I am not ready for this step, so soon after my transplant. Maybe in a year or two, if we run out of options, but not right now.

If you want to read more about transplant with donor cells and GVHD, you can here.

Three) Clinical Trials. (which it looks like my gut is telling me to do) There are lots of clinical trials out there at the moment. That could potentially put people, like me who have refractory (relapse within three months of remission), into small remissions (amounts of time where there is no disease). One especially, is almost being approved from the FDA (Federal Drug Association), and there has been lots of good feedback on it with minimal side effects.

This drug is called SGN-35

Fellow hodger: Zach is on the SGN-35 at the moment getting treatment at M.D. Anderson. Check out his story, and maybe even donate a little to him and Erin, they are trying to fly back and forth from their home to Houston every three weeks. Which can add up to be a lot of money.

The trial in itself though has had great results, but doesn't necessarily mean a 'cure,' AND, it might not even work. That's what clinical trials are - they are trials. But if it does work, I could be on it for months, even years. It might be a good step to buy me time, let my body build up. And see what else is out there in a year or two, or possibly attempt another transplant.

There is another clinical trial out as well called MGCD0103. This trial is taken orally in a pill form and has show reductions in disease as well.

Fellow Hodger: Adrienne is on this clinical trial at the moment. And although side effects are in her daily life, Adrienne is kicking butt in college and applying for her Master's degree come next fall.

However, with each clinical trial comes risks as well. Maybe not death, but maybe progression in diesease.

Four) The GND cocktail. Gemzar, Navelbine, Doxil. This cocktail is a drug that I could be on, at any time.Meaning, I could go on it now. I could wait and see what the clinical trial does, if it works - then it works. If it doesn't and my disease is getting somewhat out of control, we could put me on GND immediately to buy me more time. Or until I decide to go into transplant again.

Five) Roll over and die. okay, I'm sorry, I couldn't resist ;)

So, those are the options I am faced with at the moment. Believe it or not, I'm in very good spirits. I'm relaxed. For the first time in my life, I know what the future looks like, I know what I'm facing. And, I know what I have in me.

Mentally, I first faced my deepest fears last week.. when an individual asked me if it felt like I was 'wasting my time,' if I knew I would probably die in ten years or so. Or maybe sooner. But the truth is, we have no idea when our time will end. Is an 18 year old who gets in a car accident and dies - wasting their time? Is a 50 year old man who dies of a heart attack, who never had children, never found love, hardly contributed to the outside world - wasting their time? Is a six year old diagnosed with a rare blood disease, who passes away within a year, wasting their time on this earth?

no.

I am not here, wasting time.

Realistically, I could roll over, put the covers over my head, and give up, emotionally. And, no one would argue with me, if that is how I wanted to handle this. But, that is not me. And, I am here to be in the classroom. To teach children how to read. To cheer up survivors I meet in other hospitals, to be there for my family and friends, when needed. Toii defy the odds, over and over and over again. Because I have. That has been my life. To take something, so horrible, and so heartbreaking, and turn it somehow, into (dare I say it) somehow beautiful.

This, me, here... is not a waste.

And for now, that is what I'm going to hold on to. And some friends, who always seem to amaze me with their incredible, amazing support. Dare I say -- I am one of the luckiest people, to have individuals like this in my life, and Boston at my fingertips...

I still have a few more appointments in NY, and then we head back to PA next week. To make a final decision. As always, I will be keeping you all updated.

B!