Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too. ~~Lawrence Bixby

Wednesday, June 29, 2011

The Backstory

I know some  people are curious about why I have so much difficulty walking and standing but are too polite or nervous to ask. The assumption is usually MS, since that's what my walking resembles. I wish I had a definitive answer - what I have is a 95% sure guess by my neurologist: radiation-induced lumbosacral plexopathy. Here's the story:

In 2001 I was diagnosed with colo-rectal cancer. (More detail about that surreal time in another post.) I went through the standard western medicine protocol - radiation, chemo, surgery, more chemo, more surgery - plus some alternatives and not a little woo-woo. And I'm here to tell you that it all worked! In September it will be ten years (I don't know why they mark survival rate from the day of diagnosis, but there it is). I think we should have a party!

Mostly, things went well for the first five years - after all the treatments and surgeries were over, I was left with a body that worked pretty much like it did pre-cancer, with the exception of my guts, which required far more time and attention than I wanted to pay to them - the message being something about dealing with my shit. Then right at the five-year mark, I started experiencing severe tingling and numbness in my feet. My primary care doc tested my Vitamin B12 level which, as it turned out, was extremely low.

Warning! If you have abdominal surgery, INSIST that your doctor do routine checks of your B12 level for several years. According to Northwestern Hospital, Chicago: "For vitamin B12 to be sufficiently absorbed by the body, it must bind to intrinsic factor, a protein released by cells in the stomach. The combination of vitamin B12 bound to intrinsic factor is absorbed in the final part of the small intestine.Causes of vitamin B12 deficiency include: Abdominal or intestinal surgery that affects intrinsic factor production or absorption." And - it can take years for the deficiency to start showing up since your body stores B12 for a long time.

So. I started B12 injections and gradually the numbers rose into the normal range. But my symptoms were getting progressively worse. Then came the visits to the neurologist. More than any other physician,  neurologists love to do tests. I had every kind of blood test imaginable, body scans, electrical conduction tests, imaging -- and most everything came back normal, except the nerve conduction tests, which showed sensory and motor nerve damage.

I started experiencing balance problems, foot drop, an awkward gait and fatigue. I was also dealing with more gut and bladder issues - which led a few doctors to the conclusion that a bundle of nerves in my pelvis was in the line of (friendly) fire during the radiation treatments. My colorectal surgeon flippantly remarked that radiation was "the gift that keeps on giving," but then didn't offer much of an explanation or encouragement. My neurologist gave it a fancy title: radiation plexopathy. It's another condition that can take years to start presenting problems.

It's a pretty rare condition, from what I've been able to determine. I have no idea what to expect in the future in terms of my ability to walk. So, guess what - I get to take it one day at a time!  We are starting to see more and more long term effects of cancer treatments as people are outliving the disease for longer periods of time - or are there just more people diagnosed with cancer?

I decided to start this blog to journal about some of my experiences, to share resources and ideas, jokes and successes, to ask and answer questions and to celebrate the life I'm so blessed to have. I'm happy you're on this journey with me.

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7 comments:

Tiffin said...

Bookmarked and tuned in. It will be interesting to go on this journey with you, Ter.

wendy said...

I've subscribed, Terri - not only do I think blogs like this can be "therapeutic" to the writer, but they are a tremendous help to others who may be experiencing similar challenges. You are so wonderfully positive (and funny, too, I might add). I'm happy to go on this journey with you, my friend xo

Anonymous said...

thanks for sharing this Terri. you are an amazing person so full of life. with so much talent, so many intersts. you have embraced life in a way many people do not. i wish i could be more like you. Jackie

Linda Koons said...

I'm along for the ride, too. Your positive outlook and determination are inspiring to those of us who have so much less to cope with.

DeEtte said...

Hi Terri, what a great blog! There were a lot of questions I had but didn't want to ask difficult or embarrassing questions. Thank you for answering them is such an open manner. I have passed on the link to my daughter as well.

Peace and many blessings to you, my friend.

gwenlyn said...

In order to leave you this post, I am required to type in a word indentification. Just below it is that little blue wheelchair person - the symbol for "access." After reading your blog, I think we should change that symbol to a great.big.red. open heart!

Anonymous said...

The blog is interesting, informative, funny and bitter-sweet. It's a courageous self presentation. Thank you for sharing so openly.