It’s not the load that breaks you down, it’s the way you carry it. (Lou Holtz)

Whether or not you have a progressive disease, chances are, at one time or another you’ve wondered how long you really have on this planet, and what your life is going to be like as your future unfolds.

But, we can’t know.  That’s the thing.

I once read about a guy who contracted AIDS back when the epidemic first began, and he figured… what the heck, I’m gonna die soon, and I can’t take anything with me, so I might as well spend it now.  And he did. He quit his job, he sold his house, and went on cruises, bought cool and expensive things, and basically completed his bucket list (before that term had gained the popularity it has now).

But, he didn’t die.  And that was great, except he was unemployed, with medical bills, and was stuck living without many of the little pleasures in life that money actually can, and does, buy.

Because he had spent it all.

When I was first diagnosed, I was given “less than five years”.  This upcoming July, nine years will have passed.  But I haven’t.

And, I’m grateful for that.

So, when someone says to me that I have a great attitude, I always figure, why wouldn’t I?

A year or so ago, I was searching the internet.  I don’t even remember what it was that I specifically was looking for.  It had to do with tube feeding, and I think it was something about blended meals.  Maybe it was  Liquid Hope, or Real Food Blends.  I honestly don’t remember.  And, it doesn’t matter.

For whatever reason, I stumbled across Brian Liebenow’s blog, and it amazed me.

His attitude is phenomenal.  He is irreverent.  He is positive.  If you told me it was he, who  put the “P” in positive, I would believe you.  (Well, not really, but I’m laying the groundwork here.)

The “Before” Shot, Afghanistan, 2002

 

In  2003,  when he was just 28, Brian was diagnosed with non-Hodgkins Lymphoma. It was diffuse large B-cell lymphoma, stage II, in and around his left tonsil.

He describes chemotherapy as “somewhat difficult”, and goes on to say it wasn’t nearly as bad as he expected it to be.  By the end of 2003, testing showed his body was cancer free, and he was in remission.

His oncologist urged him to get radiation, just to make sure the cancer would never come back. And, it sounded like a good plan.  He wanted to continue with his Air Force career with no fear of a relapse. Radiation was quite difficult for him, he had many adverse reactions, and did not finish the entire course of treatment.

He developed radiation-induced neuropathy. The damage was to the left side of his cervical spinal cord. This is rare; most people do not react so badly to radiation, and even fewer get damage directly to their spinal cord. Radiation damage progressively gets worse over time, and he lost much use of his left arm. The Air Force ultimately decided that his  health was too poor, and he was medically retired as a Major  in late 2006.

Then, his lower left jaw started hurting, and x-rays revealed osteo-radio-necrosis in his left lower jaw–radiation damage to the bone tissue.

Things went downhill from there, and, in 2009, after two extremely long surgeries, and a bone graft that did not turn out well, he  was also no longer able to swallow due to irreversible nerve damage, and joined the ranks of the lifelong tubies.

At the time of me writing this, Brian has endured more surgeries, as the necrosis from radiation continues to take its toll,  This past  September, his left arm was amputated, along with a few ribs and his collarbone.

And yet, he perseveres.  And he travels.  And he blogs about his travels.  His blender comes along  with him.  I love seeing photos of him in  restaurants, with his blender jar sitting on the table in front of him!

This is one guy you really should get to know.  His posts are entertaining, they are poignant, and they make me see how important one’s attitude is when it comes to living the life we are given.

He has graciously accepted my invitation to make a guest post on Tube Chic, at some point in the future.  In the meantime, you can find his blog here:

http://travelingtubie.blogspot.com/

 

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