Getting a recurrence this quickly isn't great news and the next round of chemo to root it out will be more extreme than the treatment I had last spring and summer. Here's the game plan:
- 3 months of ICE, a protocol typically used for non-Hodgkins to get rid of this latest set of malignancies. I'll probably tolerate this ok and will be able to continue to work. Will probably lost most of my hair (again).
- Harvest my white blood cells and separate out some white cell stem cells.
- 5 days of very intensive chemo that will really wipe out my immune system. After this I will be pretty beat up and without getting a white blood cell transplant (from myself to myself) I'd be at great risk for a whole host of nasty infections.
- Get my own white blood cells back and regrow my immune system (4-6 weeks of feeling pretty beat up while I recover from the high dose chemo). I will take a 2 month leave of absence which will allow me to recover at home without much exposure to bugs that could get me sick. I envision lots of walks and hopefully (slow) bike rides to help me recover my health through this period.
- Participate in a clinical trial over 21 weeks that gives me a maintenance dose of a very successful new drug for getting rid of any residual cancer cells. At this point I will be back to work. I'm not sure if this maintenance dose will prevent me from regrowing my hair or not and what impact the dose will have on my blood chemistry.
- Live a long time!
As you can no doubt guess, this has really rocked our world and I've spent the last month or so coming to grips with this next step of the journey. It's been a pretty scary, sad and angry time for both Susan and I. We've gradually let our friends and family know what's going on and have received great support and love. With this post, we've now gone completely public with our status. I'll probably start blogging some more as it does provide a way to express what I'm feeling and it's also a great way to keep people in the loop on how things are going.
One perspective I've gained that has helped a lot is that this latest treatment doesn't need to cure me for 30 years. It just needs to keep me healthy long enough for the next advance in medicine to combat whatever strange things happen in my lymphatic system. That perspective has kept me from going totally psycho over worrying if this next treatment can do what the previous ABVD regimen could not do, namely keep these malignant cells from multiplying in my lymphatic system. I've also been doing a bunch of guided meditation to think really positive thoughts about my health and longevity to help my body do the right thing.
So this pretty much sucks but it is what it is. Tomorrow I'm back in the big chair for more medicine that will help me get better! So I'm psyched to get that going and feel the nodes in my neck shrink back down to normal levels.
That's it for now. Send positive energy my way and I'll keep you up to date on how things go!