Up the Down Staircase

And now for the next phase in the continuing saga of getting from Point A to Point B. About a year ago I put the fear of Goddess into Laurie when I mentioned that I didn’t think I’d be able to continue using the stairs in our home for another 12 years (when she’s due to retire). I thought another 12 months would be stretching it. It’s a full stairway, 13 steps, with landing, from the main floor of the house down to our bedroom and (fully accessible) bathroom.

As Laurie does when there are obstacles to overcome, she obsessively thoroughly explored our options:

1. Since she needs to stay in this house to continue doing her work, moving to an accessible home would be next to impossible for 12 more years.
2. We could rent an apartment for me where she’d come and stay on weekends (didn't we already do that? Before we lived together?)
3. We could rearrange the house so that our bedroom is on the main floor – which completely defeats the purpose of the major remodel we did six years ago, creating new living space for us separate from the rest of the house.
4. We could spend a lot of money and get a stair lift installed.

It seemed as though #4 was the only viable option.

Of course, I can’t think of a stair lift without envisioning that scene from Gremlins:



Barring any naughty gremlins sneaking in to adjust the lift, this should solve the stair problem and make it possible for us to stay here until we’re ready for that retirement condo.

Tomorrow morning the lift will be installed. You can count on thorough documentation, with photos and maybe a video or two.

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My Big Fat Tool Kit

It started with falling. A lot. Falling down the back porch stairs. In grocery stores, coffee shops. One bad fall just before a concert in which I had a solo. Usually I'd land on my knees (which contributed to a very painful torn meniscus and surgery to repair it last summer) and occasionally on my bum (which once contributed to a very colorful hip and cheek - no photo included here). The falls were due to a combination of loss of balance from peripheral neuropathy and from foot drop. My toes would catch on the slightest bump and over I'd go, with no good recovery mechanism because of the balance issue.

I'm using the past tense here, not because the problems have gone away, but because I have some tools at my disposal and because I've become so mindful of my movements and out of necessity, walk very slowly (which usually isn't a bad thing at all). It’s been more than a year since I’ve fallen. I've had some close calls, but with physical supports and mindfulness, I’ve managed to avoid that most unpleasant feeling of taking a tumble without a net.

I started with a cane. Looking back, that was probably the most difficult decision to make, as it signified the first real acknowledgement of disability. At first I used it only when I was out and about. It offers me stability and, as a wise person pointed out to me, it’s a signal to others that I have a physical challenge that isn’t immediately obvious. It was becoming difficult to be in crowds – I get panicky when I feel trapped or when I’m being jostled and the risk of falling greatly increases. Soon I was using the cane most of the time, even in the house.

Two years ago I was in the hospital for a surgery (which I may or may not discuss later). Apparently it became obvious to at least one nurse and by extension, my doctor, that a walker would be a good choice for me. A couple weeks later, the home health van pulled up and delivered one to me, which I was completely unaware of and unprepared for, emotionally. The walker sat for a week or two, me staring at it, feeling resentful and unwilling to take that step (so to speak). But when Laurie and I went for a walk and I was able to go farther than I had for months – maybe even years – I had a change of heart. I embraced it, decorated it (sock monkeys rule!) and began to have fun with it. What I love about these walkers is the built in seat – if I get fatigued or sore, I can turn around and voila! A chair! Waiting in line at the post office? No problem. At a party with limited seating? Thanks, I brought my own.

Ms. P and I "stroll" around the block

But the thing about a walker is, well, you still have to walk. And that’s become increasingly difficult and painful for me. I was having to drive everywhere, even just a few blocks to the grocery store or the library. So when Laurie’s brother and sister-in-law told us their friend was selling an electric scooter for a very good price, I decided to give it a whirl. Wow. Talk about getting my life back! Now I can zip all around the neighborhood, take Liza for long walks at her pace, go to the grocery store, the bank, the library and just MEANDER! I haven’t meandered for years! I feel like I’ve reclaimed my neighborhood. I’m taking photos again (my photo blog), now from the seat of the scooter – I call it “scootography.”

The point I'm trying to make in this long winded post is how difficult it is to accept disability - and nothing screams disability like canes, walkers and scooters - but once the hurdle is cleared, the tools available to us can improve the quality of life enormously. I could easily become a shut-in. But there's a lot of living to do out there in the world, and I'm so grateful for the tools available to help me do that. And to the people who've encouraged me to take advantage of them and who help make that happen.

Next up:  the biggest, fattest tool of all. We get a stair lift installed tomorrow!

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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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