Memory

Memory is a funny thing

Ever wake up to a memory and think "did I dream that? Did that really happen?"

Of course you have, we all have.

I still get flashes and recollections of things from when I was extremely sick and out of it from the liver and kidney problems.

These are not good memories.

Caution - Gross tale

The worst one struck me the other day.

Apparently, while I was very sick, I was having gut problems, a likely symptom of graft-vs-host-disease. You'll recall this is where the new immune system rejects organs in you, its new host. A common, and eventually harmless, when treated, manifestation of gvhd. But like aliens armed with anal probes, I was whisked away by a pack of gastro docs for the most invasive colonoscopy in the history of colons.

Things were shoved and penetrated, biopsies were taken, I was violated in a flurry of activity. No dignity in the life of a patient.

But what's so interesting to me is how my mind completely shut this memory down until recently.

Memory is a funny thing.

Quick hit on Brentuximab

Many wind up this page looking for information on and experiences with the drug Brentuximab vedotin (or by its commercial name, Adcetris). This drug targets my systemic anaplastic large cell lymphoma very directly, and effectively saved my life. It put my stage 4 cancer into remission in just a couple of months.

Well, its manufacturer, Seattle Genetics, recently presented results showing very positive survival rates at four years among those who achieved remission by using Brentuximab. Good news.

Bits, bobs, other things

You can now follow @Chemo__Brain (double underscore) on Twitter. Just click the new follow button on the right side of the blog.

If you get a moment, please check out the story of Ottawa's young, courageous Phoebe Rose.

A fascinating essay from scientist Oliver Sacks on finding out he has terminal cancer.

And master documentary filmmaker Ken Burns has a new documentary coming out in March 30 on PBS based on the Pulitzer Prize winning book, Cancer - The Emperor of all Maladies.

BLOG MOVING

Please note this blog will soon be moving. As readership expands across the world, let's grow the blog page as well. Forwarding information will of course be made available. Thanks.

The Incredible Shrinking Man

I've lost 60 pounds in the last three weeks.

Now, that sounds terrible, but it's a really good thing. It means I'm finally making progress in conquering the ascites. That's the crazy accumulation of fluid in my abdomen, an ongoing gift from my earlier liver and kidney failures.

Not only does this mean my body, and in particular liver and kidneys, are steadily improving, it has vastly improved my mobility. Imagine being at the weakest point in your life, and someone throws a 60 pound belt on you. Yeah, that's where I was at. 

At 168 pounds now, I am a bit lighter than an MMA welterweight, which was always my fighting weight anyway. In grade nine. 

There's still lots of fluid in me, and I've lost so much muscle mass, I'll admit I'm a bit worried about what my actual body weight is. Despite an absolutely voracious appetite - I probably eat about 7 protein and carb packed meals every day- my little chicken arms and legs suggest I might literally be a lightweight at this point.

But, with the fluid getting under control, it also means I'm more likely to start sooner in the intensive rehabilitation program, which I really need to help me rebuild all the muscles lost from steroid use and the hospital stays.

I'm actually now off the steroids entirely, which is great. Though on top of all else, as an extra kick in the pants, the steroids gave me a hopefully-temporary diabetes. But this seems to be getting under control now as well.

I need to throw out special thanks to my physioterrorist, Becky. She kicks my ass every day. But she keeps me going and getting stronger. People like this make a big difference in one man's life.

Becky, my wonderful, evil physioterrorist, with an innocent smile.

TEN PERCENT

If you have a moment, check out the story of Mark Newman, diagnosed with a rare melanoma and given a ten per cent chance. 

Stories like help me accept my one-in-three shot. Unfortunately, some people don't even get my odds. 

BLOG MOVING

Please note this blog will soon be moving. As readership expands across the world, let's grow the blog page as well. Forwarding information will of course be made available. Thanks.