There's No Place Like Home

After another long admission of about three weeks, my leaves of absence went well and I've finally been discharged from the hospital. Again.

I've been down this road before, but really, I hope this is the last time. Barring major illness or catastrophe, it should be.

It feels great to be home. Playing with my kids. Hugs every day. Sleeping in the same bed as my wife.  I'm already getting stronger and steadier, packing in calories, moving around more.  Don't get me wrong, I still move around like a drunken, wobbling disaster, I can't stand for more than three or four minutes at a time, and can basically accomplish nothing that can't be achieved from a seated or prone position, but it's getting better.

And in a couple of days I'll finally be starting the Ottawa Hospital's excellent rehab physio program - an intensive, full time, affair. It will be rough, but much needed to restore all I've lost from the steroids and from the generally sedentary period in the hospital.

I'm also off almost all of my meds, too, which feels great. I'm down to three pills: Ursodiol for my liver, Acyclovir for shingles/chicken pox, and Pantoloc to protect my stomach from all the meds. Though as I'm writing this I'm questioning the need for that last one now...

Cancer Risk Assessment

Cancer Care Ontario has this great guide for assessing and lowering your risk of various cancers: breast, colorectal, cervical and lung. Please tell me if I ever get preachy, but as a guy with a randomly occurring, unpredictable cancer that has no real risk factors, it's important to assess your risks for these kinds of cancers when possible, and to talk to your families about it. Have a look. 

Cancer: the Emperor of all Maladies

I recently mentioned the Ken Burns/Barack Goodman upcoming PBS documentary, Cancer: the Emperor of all Maladies, and I highly recommend the website and short video profiles. But the short I Loved it All, particularly moved me, and absolutely crushed me. I tweeted the other day about how these days everyone's a photographer. But there still remains an art to it that rests in rare, gifted hands, and that's telling moving stories through nothing but stills.

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A glass half full kind of day

As a first bit of good news, I'm getting what they call a "leave of absence" tonight to go home and see how I can function. I'm excited to see my family and sleep in my bed. I'm also a bit scared given how weak and unsteady I still am, but I guess you need to get back on the horse sooner or later. 

Funny, I can leave the hospital but I can't leave my room to walk around the floor. That's because I developed a bit of a cough the last couple of weeks. Nothing major, and I figured it was some kind of irritation from the awful dry air in here.

I mentioned it to the docs a week or so ago, and they were unconcerned. But late last week it clicked in their minds that I could be contagious, so they've put me and my room under "droplet" conditions. Anyone coming in must wear a mask, and I am forbidden from leaving my room. There are many immune-compromised patients here, so they take no chances.

Then they pulled out The Swab. The Swab is roughly the length of a pencil. And they stick every last inch of it up your nose until your eye feels like it's going to pop right out of your head.

The Swab showed I have parainfluenza, which is not a real flu, but rather more like a very minor cold. I've rejected the prescription of Tamiflu, because it's just a damned cold (see previous blog posts about questionable over-prescribing).

But the docs decided to send me for a CT scan to confirm it was this virus in my lungs and not something more pernicious, like a fungal infection. I was going to reject the scan as utterly unnecessary, but confirming there is no fungal infection actually gets me off my the last of the daily IV drugs I need to take, so it was worth doing for that reason alone.

Results were good.

No fungal infection.

It also confirmed my ascites, the massive fluid build-up in my abdomen and under my right lung (from the liver and kidney problems), is rapidly resolving. 

My kidneys are also basically back to normal functioning. Liver is taking longer, but it's getting there.

And, as an unexpected bonus, it confirmed no cancer activity.

I didn't expect any. Still, that was an opportunity to spot something, and it didn't. These lymphomas can sometimes come back quickly, and I'm obviously grateful mine has not. Four months post-transplant, I like that result. 

My odds remain what they are, basically one-in-three that the cancer gets cured. But if I can make it to two years cancer-free, the most experienced Hematologist here tells me I'll be free and clear of the Non-Hodgkin's Lymphoma for good. I've now eaten up one-sixth of that timeline. I'm the guy jumping off a six story building, and as I pass the windows on the 6th floor the folks inside can hear me shout "so far so good!" Just catch me at the bottom, Brookie.

Whether or not the two year time frame is accurate, I do not know. I trust that doctor's experience. But it's a goal. And I know there is always a lot of danger for those who have been through this of developing other cancers later in life, commonly, leukemia.

The Sword of Damocles by Wenceslas Hollar

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

BLOG MOVING

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