Hill to the Left of Me, Hill to the Right

There’s a roadside attraction of sorts in Lake Wales, Florida called Spook Hill. You throw your car375668_10151609135427310_82917642_n into neutral at the white line and it rolls uphill on its own. Or what appears to be uphill. I think I remember the whole extended family driving over one time from Bartow where we spent our Christmases. My grandmother probably sent us just to get us all out of the house for a little while so she could breathe. Pretty sure I was unimpressed by the whole rolling backwards uphill thing. I was older than the pic to the right, but I’m going to guess that the face I was making was likely the same.

Today, doc told me I’ve relapsed. Again. What is it now? Four times in three years? Five? I really can’t remember. It’s abundantly clear that my body wants me dead. Unfortunately for my body, it’s dealing with a brain that has zero fucks to give about what the body wants. None. My brain is like the weapon of an apathetic martial artist—nonefucks.

I stole that. Ha.

In March, I went for a second opinion at Shands in Gainesville.  It was an impressive facility and the doctors spent over two hours with my mom and me, going over all my medical history and discussing it in minute details. At the end of the visit, they said my doc has done everything they would have done. My mom asked them point-blank what they would do if they were me. The main doctor said if she kept relapsing on prednisone, she would try another immuno-suppressant. There are more out there that carry their own barrage of side effects, but staying on steroids forever is brutal on the body.

First things first though, get me back into remission. So a pounding of prednisone is what the doctor ordered. Took the first dose of the increased regime tonight. Back to the big guns…bigguns…BIG ‘UNS. My mind so frequently warps to Al Bundy, it’s slightly disturbing. What is that about? This isn’t funny. Thing is, if I can’t laugh about it, I won’t make it through. That’s true for everything that’s difficult for me. I can be upset, angry, and grieve, but eventually I gotta start laughing.

Doc says, “You’ll have all the energy you need now!” Thanks for the random bit of enthusiasm, but it doesn’t suit you. And, yeah, I admit that my stock response to the question of “How are you?” has been “Exhausted.” for the last few years, and I do hate feeling slothy and narcoleptic, but come on. What he really meant was, “Bring on the insomnia!” And I don’t know why I just bought that loaf of fresh bread from the bakery while picking up my pred script. Unless I want to balloon up like Violet Beauregard, carbs need to stay the hell away from my face-hole for the next few months until I’m back in remission.

And then I get to try a new immuno-suppressant. The last one I attempted made me itchy all over and straight-up suicidal, but I’m optimistic about this next one. <—That was another joke. I try to stay away from optimism. It’s how I keep from being disappointed in life. Or is that why I keep my expectations super low? Maybe both.

Fact is, either option is craptastic in its own way. Quality over quantity. Quality over quantity. Quality over quantity. If I say it enough, it’ll make it okay, right?

At the end of the driveway this evening with the dogs leashed and ready to go, I looked left, I looked right, and I realized I live in a valley. Whichever way I go, it’ll be uphill. I can put my drive into neutral and hope the roll happens on it’s own, bringing with it the optical illusion of fun, but I’ll still be going uphill.

 

Faces of accepting yet another relapse:

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Dark and Dog-tired, Take Two

I’m still up in the air with my feelings about Facebook’s “On this day…” feature. Some days it causes a baritone belly laugh and others it brings forth a saltwater flood from my eyeballs. It has reminded my hermit self of events I had forgotten about attending, and it’s brought back words spoken that had been pushed out of my mind.

But today, today… . Today, that bastard feature showed me a blog post of a poem I wrote last year when I had once again relapsed. It was titled Dark and Dog-tiredReading over it again today took me back to that drive to the mountains—my place for recovery of all kinds. The poem was unedited when I posted (too full of emotion to care), but finding it again, I will definitely be working it over and over until it’s in better shape.

Not only was I reminded of this forgotten poem dealing with relapse, but another poetic influence may have been my savior today. Earlier this year, a dear friend sent me the memoir The Best Day, the Worst Day, written by Donald Hall about his marriage to Jane Kenyon. Two writers/poets and their difficult path traveled together through the fury of cancer. It is an absolutely devastating but beautiful story of love. I’m not a huge fan of his poetry, but his words in this memoir…oh, my. Theirs was a love that, I am not ashamed to say, I envy.

I may have connected with the story a bit more than I normally would have because of some of the drugs she had to take being the same ones I have also been on and off and on again over the last three years. His descriptions of her levels of pain and the side effects were spot on—things I have never been able to express to friends and family. The rage. The moonface. The depression. The joint pain that you lie about and say is a 6 when really it’s closer to a 12 on a scale from one to ten. The hair that embarrassingly covers your entire body, including your cheeks and chin. The clumps that fall from your head.

And the one that rang out in my mind recently and wouldn’t leave—the rash. A few days ago, it broke out across my chest and collarbones and felt like thousands of tiny bonfires raging under my skin. At first I thought allergies, but my brain said, Pay more attention! Remember, woman! And I did. I remembered Hall’s description of Kenyon’s cyclosporine rashes and how they’d have to rush her to the emergency room, so I called my doctor. His words were, “Stop taking it IMMEDIATELY.” Those are scary words to hear about a drug that is keeping me in remission.

What if there is already too much in my system? What if I called too late? What if stopping now isn’t soon enough? What if stopping now makes me relapse?

I can’t go through all this again.

I can. And I will if that’s what comes. Every time I feel like we’re getting a leg up on this syndrome, another hurdle is thrown on the track and the reasons to keep me jumping are already dwindling—dark. And I’m exhausted—dog-tired.

So I’m going to focus on the fact that poetry got me through this day a year ago and it helped save me today. Instead of worrying about what is next, I will work with my words and lines and keep leaping.