Tuesday, August 26, 2008

A dark gray line, one inch

Very strong in my mind's eye. A dark, grey line, one inch long.

Today in the MRI, I wanted to transport myself from the moment, the clanging and buzzing that actually soothes me because I know that answers might be found.

So, I went to that familiar place...

...settling the saddle pad onto Shadow's back in just the right place, a little forward and then sliding it backward a bit so the hair will lie all one direction, flat.

....swinging the saddle just right so stirrups and cinches will float over his back and settle lightly onto the pad and yet not bang the stirrup and cinches into his "off" elbow.

.... going to the off side, letting down the cinches, hanging the breast collar over the horn neatly so I can grab it from the other side.

....I rode that saddle for 21 years. Twelve of them on Shadow. And I haven't ridden in a year and a half. My sister, 3000 miles away, owns that saddle now.

...back to the near side, I reach under and grab the cinch, then loop the latigo through it, hands moving by habit, learned, memory, muscle movement that will not become unlearned, will not be forgotten.

....buckle up the back cinch...just so.

....then reach under his neck for the breast collar, which I have freed from the saddle horn with my right hand, and take the leather strap and feed it through the ring and back to the buckle.

There it is, the dark, gray line. Across the leather strap, it reflects right where the buckle has rubbed it for over 12 years on this sturdy little horse. It guides me to know the right fit, the correct hole in which to place the tongue of the buckle. It is always the right fit if I use that line as my guide.

Of all the things that could stick in my mind while lying flat in a clanging MRI in a hospital in Oregon, my wedding ring vibrating from the magnetic pounding and the back of my head hurting on the flat table; my legs full of neuro-pain from this supine position, my eyes closed for the 30 minute test, earplugs firmly stuffed into both ears, right arm wrapped in "vet wrap" to hold the cotton ball over the injection site

...of all things, I focus on that one-inch, metallic gray crease on the breast collar strap of my old Salisbury saddle, now in a tack room at a stable in New Hampshire.

MRI today

Today, I had the MRI for my jaw, both without and with contrast. Next week, I'll find out if I can proceed with the bone strengthening treatment (if the MRI results are good) or not (they would be bad results).

The radiologist was great. When he had to give me the shot for the contrast, he wondered out loud where my veins were. I told him that lately, everyone has been having a hard time finding my veins. He just waited, didn't poke me except the one time when he got the vein and gave me the shot. A good tech!

Today I bought some clothes for my two trips to California next month. Badly needed. I've been dressing myself from Goodwill and Senior Citizen's thrift shops for too long.

Thursday, August 21, 2008

Xrays and the results

Yesterday, we drove to our "shopping town" to keep my appointment at the cancer center in order to have the IV drip of pamidronate, a medication to help beef up my bones for the upcoming fusion surgery.

Alas, I ended up not getting the IV treatment at all. I spoke with Dr. Fu, telling him I have a lot of intense jaw pain every day, and since bisphosphonates can cause jaw necrosis, he had me go to the hospital for a bunch of xrays.

The nice girls doing the xrays were so gentle, but the way they had to manipulate my head to get the shots, it took the legs out from under me. I was supposed to go back and get the 3.5 hour IV drip if the xrays looked good, but I went back and said I'd have to reschedule, I had been there over 2 hours already and couldn't look at another 4.

Dr. Fu called when I got home and said the xrays didn't show anything but that was nothing because xrays are such a low-tech diagnostic tool. So, he is setting up an MRI of my jaw.

It's a deep, burning ache, lower right jaw. Doc said he wouldn't do a pamidronate infusion at all until I had the MRI and everything was clear to go. No DEXA (bone density test) until the end of the year, so I definitely won't be having the fusion until early next year, at the earliest, if all proceeds well. MRI is scheduled next week if it is authorized by work comp.

AND, praises to God, the MGUS (monoclonal gammopathy, pre multiple myeloma condition) tests all came back normal and fine. So no worries about that.

Today, I am in a lot of pain due to the positioning of my head during the imaging. Very weak and feeling very "neuro." I just can't be moving my head in different directions, no matter how little the movement seems to be. They also pulled downward on my arms to lower my shoulders out of the pictures of my jaw, but now I realise what I already knew but forgot: the arms are attached to the upper Cspine! They should have known how that might affect me, I told them all about my injuries.

I had hopes of cancelling my trip next month to see "Agreed Upon Medical Examiners" for work comp purposes. I am just not feeling up to it at all. But now, I am learning it is very important for me to go, so I will just cowboy up and do it. Then we'll be back for a week before flying back down to California to our son's wedding.

Tuesday, August 19, 2008

Green Acres

Today, I made a strawberry/rhubarb pie. With a frozen, store bought pie shell and strawberries from my freezer that grew here on the place, and fresh rhubarb growing in the back kitchen-garden. It turned out ... well...very good!

I love having food that comes from our land. There are many perennial food crops here on the place that were planted before we moved here.

Two kinds of blackberries
Grapes (only 4 plants that are struggling but I see two clumps growing if I can keep the deer away)
Garlic Chives

And then there's what I have planted:
Green chiles
Green beans
Asparagus that will be good for next year
Seedless watermelon from the seeds of the fruit we bought to eat last year
Spinach, tons of spinach
One carrot

Yesterday, we put a short wire fence around one of the garden plots. It's a great place, built up from a hillside, with 3 tiered beds. The fence is not high enough to keep deer out, but the purpose is to keep Mickey the dog out. He likes to dig there.

Within that now-fenced area, we also have six small pine trees and some forsythias that I started from cuttings this spring. Nearby is the large wooden "box" that is our compost bin. It was made by the previous owners and we have harvested two big loads of compost from it. It's a great place to put weeds and clippings, kitchen waste, dirt and leaves.

I water it every so often. It is built with chicken wire over open areas on the bottom to allow air to circulate through it. It won't be useful until next Spring...but that is the fun part of it. Next year, the lovely, rich loamy stuff will be like a big present waiting for me to deliver its goodness to various, well-deserving plants.

When we moved here, there were many scraggly, small pines planted down in the lowest level, near the road. A great place for a stand of trees which will some day provide a lot of privacy. The trees had been ravaged by deer.

I have nurtured these trees with Miracle Gro fertilizer, most of this year's compost, mulching and watering and they are growing phenomenonally. I love them. They are one of my pet projects. I will love it when they are tall enough to screen us from the road.

To keep the deer damage to a minimum, I spray the trees and other plantings susceptable to deer browsing with a product called "Not Tonight, Deer." Great name, huh? It is "emulsified egg solids" which means it is basically rotten eggs.

I buy it online for $12 and one packet lasts me all season. I mix it up in a bucket of water and let that steep for a few days. Then I pour it into a pump sprayer through cheesecloth. I walk around and spray all my tender plantings. It doesn't take long and is enjoyable. Tonight, the batch had "steeped" so long that it smelled like pig manure.

I believe you can teach deer that the plants in your yard do not taste good and this can be passed along to future generations. I have used these rotten egg products for years and in many states, especially at our last job in CA. If you keep after it, it truly does work.

Roses? Oh, how deer love rose blooms. But if I keep after the bushes with the spray, the deer will leave them alone.

I remember when we first moved here and I thought being a gray-haired lady who just gardened was a big downward career move! But now, I am a happy, happy gardener. I can't keep up with the weeds so I don't worry about it. When they get big and tall, they are easier for me to pull anyway. If I ever do pull them!

This evening while puttering around outside, like I always do if I feel up to it, I realised that this gardening thing is similar in many ways to what I'd done all of my life. Working outside...alone...no talking...not even thinking about things, just the task at hand. Working with horses is just like this and it is very therapeutic, very good for the brain.

Sunday, August 17, 2008

I couldn't do that...

When we go back to California, it has been suggested that we go back out to the ranch, see how things look, see our old bosses, and I could see Shadow.

I've thought about that some.

I do not want to go see Shadow.

Twelve years spent with a horse and sharing trails together seems like it should constitute a reunion when it is convenient.

I tell people, "No, I won't go back, even if I'm ten miles close to it. Anyway, Shadow won't remember me, he won't care."

But you know, the truth is, I believe he would remember me.

I believe that he'd be out in his pasture and I'd whistle and he'd come running up to the top of the hill, and then plunge down the hill and run into the stall to see me.

I believe he'd let me rub his forehead and I know he'd remember me. After all, twelve years is a long time.

But would that be right? To me, it feels like a wayward mother who has abandoned her child, showing up for a few minutes after a couple of years, "Hi, how are ya? See ya later!" and then disappearing again.

And I couldn't do that. To him, or to me.

Here's a photo of me and Shadow, in better, younger times. I've shared them here before...

I'm done...Tut fini

Last Wednesday, I had a PT appointment in town, a mile away. We planned that after my PT, which is always lowkey and nominal in nature, we'd drive on to our shopping town, across the river into Oregon, 35 miles away. We'd make a fun day of it.

But I knew starting the night before that I was not feeling right. The previous evening, I sat in the recliner aspirating my saliva...having slight problems with swallowing....some heart stuff...I knew it was due to the fact that I'd pulled some weeds for about ten minutes that day.

In the morning, I showered and tried to get over feeling poorly. I usually can "buck up" a lot.
But once I strapped on the CTO vest and got into the pickup and felt the sway of the truck, I knew that all of my plans were for naught.

I told my husband that I probably would need to go home. He was, at first, disappointed. I weakly walked down the hospital corridor to the PT room, and standing just inside the door, I announced to one and all that I was done with PT! I had two more visits authorized by work comp, but I just can't do it anymore. It always causes my symptoms to flare up and I end up recovering for a week til the next appointment. That's it, I'm done.

Then, with weak and shaky legs, still strapped in my brace, I walked back down the hall, carefully holding onto the handrail as I descended the 3 steps to the sidewalk and told my husband, waiting for me in the Toyota, that I needed to go straight home.

By then, he'd wrapped his mind around the idea and dropped me off at home and continued on back to do the errands we had planned. I got into the house and dropped into a recliner and stayed there til he got home.

A hot day in Washington

Here is a view of Mt. Adams taken 10 miles from our home. Mt. Adams is the largest mountain in terms of land mass in the lower 48. It stands 12,276 ft. It dominates the views from our valley, as does Mt. Hood, a bit shorter in stature and a bit further away, in Oregon.

Into the circular file...

For 14 years, I went to a national gathering of cowboy poets. It was a big part of my life, many of my friends now came from this venue, and many of my "gigs" resulted from appearing there. The gathering sparked poetry from me and simply became a large part of my life.

My injury was in 2004. I attended the next gathering, in 2005. I suffered a great deal, I remember, with a lot of pain and neuropathic burning and itching on my arms.

I was invited back in Jan. 2007, but cancelled that because I had my first consultation/evaluation with Dr. B in NY right around that time.

2008, I was recovering from the Tethered Cord surgery, so could not attend.

2009 marks the Silver Anniversary of this event. I was literally begged to attend, to recite what I could, take part where I was able, they felt I just needed to be there. I wanted to, but realised that I just do not have that in me right now, to attend something like that, to travel and socialize (this event is BIG on socializing!) and recite and handle the stress, press, and excitement.

Two days ago, the flyer for the program showed up in my mailbox. I looked it over pretty well, then threw it into the trash can. I have forgotten most of my poems. Will I ever go back? I know I'd be welcome any year that I'd choose to go. But I am doubtful I will ever go back.

That was then.

This is now.

Forward Thinking

Almost 24 hours a day, I am thinking about the fusion. About how I've made my mind up to do it and all the reasons why. I should write them down, then I wouldn't have to keep thinking about it.

My wonderful speech pathologist whom I saw and learned from for six months post injury, told me that brain-injured people "loop" things and when you write them down, you will not loop things anymore because you are not so afraid you will forget them.

But I remembered this morning something my sister told me that Dr. Milhorat said right after my surgery. He and Dr. B came out and told her how things had gone, the difficulty of the tethered cord surgery, but Dr. M spoke with confidence to my sister, saying that although my skull had fused itself in the wrong position onto the top of my spine (C1), the fusion (extraction) would "correct that a lot" and the surgery would be a really great benefit to me.

I need to remember things like this so that I can "flip them up" into my remembrance when I feel shaky in my confidence. It's a big thing for me to board that plane alone and go back to NY and face an even bigger surgery and also think of coming home with a halo on. I can do it...I just have to keep these positives in mind.

And pray.

Mickey, the handsomest dog in the West!

Last Night's Moon

Monday, August 11, 2008

So You Think You Can Ride

A few weeks ago, my husband and I spent two days at the local fairgrounds' horse arena. The event was for the Washington State Mounted Shooters and we'd made a pair of spurs for one of the trophies handed out. We set up a vendor table and met a lot of nice folks, sold some stuff, suffered the heat, watched a big fire blow up over on Mt. Adams, and listened to some tall yarns from the chink-maker set up next to us.

Pete had previously made a set of spurs, sporting the initials WSMS, a pistol and the customer's initials for the "rangemaster" of this group. She sat on her horse all day in the arena and reported to the announcer and records' keeper the score for each rider.

We enjoyed her short visits and getting to meet Merlin, her horse.

Julie was not a rider when she joined the WSMS a couple of years ago, so she told me that she had looked for a dead-broke horse to buy that would enable her to become a part of this family-oriented, horse-related club.

Merlin looked very old to me, though she said she was told he was 14. I didn't look at his teeth. But it was plain to see this horse was bullet-proof. Right down to his toes. He stood around half-asleep every moment I saw him over two days' time and never took notice of anything. Looked to be the perfect horse for Julie.

When she rode up to our tent the first time, I went out from behind the table and pet the old sorrel. The feel of his hair-covered hide was so natural to me, even though I had not, til that time, touched a horse in a year and a half. For 40 years, there was never a day that I didn't have my hands on a horse. I never thought I'd be 18 months without touching one. But, there I stood. And I didn't cry. I was okay.

I walked around him and ran my hand softly over his hip, looking at her saddle as I went. She had a pretty nice rig on him.

The next day when she stopped by, I again went out and said hi to Merlin. It popped into my mind, "I bet Julie would let me ride him around a bit if I asked."

Almost as soon as I thought those words, Julie said, "I don't want to start anything, but if you wanted to ride him, I'd surely not mind."

I said, "You bet I would." And I turned to my husband and said, "Julie says I can ride Merlin around here a bit. Is that okay with you?"

Pete firmly stated, "You are NOT going to ride that horse! No way!" I could almost hear words akin to alarm recordings in a fancy car: "Step away from the horse!"

I accepted his judgment as being better than mine, and I declined her offer and she understood. I knew Pete was right. My doctor told me that for me, riding is "suicidal," adding, "If you fall off, you die." I was sure I wouldn't have fallen off (though, who is ever sure?) but I knew that if I rode the horse, I'd be heartbroken and, also, I would start nurturing the thought of having my own old, dead-broke, bullet-proof, half-dead-on-his-feet horse.

It was for the best.

Wednesday, August 6, 2008

just getting worse and worse

I'm always torn.

I want this blog to be truthful and even sometimes painfully honest. Yet, I know I have close friends and family reading this and I don't want them to worry or feeling badly for me.

I'm just getting worse. I don't even know where to start.

Last week, I went to PT. The therapist is wonderful, these people are so honoring and they listen so well. I feel it's good for me to go there so at least someone is monitoring how I am doing.

You wouldn't believe how low key the exercises are. Shoulder shrugs, rolling the shoulders, pulling the easiest strength rubber band back to my chest and midsection. Last week, he had me lie down on a padded table and carefully bring one leg, bended, up and then sort of reach my hand carefully to the knee and then back down with the leg. It seemed so easy and I could see how it would help with core strengthening.

I used to LOVE exercises. I did them...well...religiously. I bought a home gym and worked out on that even though my job as a ranch worker and horse trainer was very physical. Most nights, I got on the floor during TV commercials and did ab exercises.

While the therapist worked with someone else for a minute, I did about ten of those "touch the knees" reps. and oh, how I have paid since then! My legs have been even more painful than ever and my hips while in bed are extremely painful, enough to wake me up. And my neck, back of head is worse. Even though there is absolutely no lifting of the head in these exercises, no real reaching, just lifting of the arm to touch the bended knee...but I guess the action of the arm-lifting is what is wrong. I don't know.

I'm also much worse on the back of my head in terms of painful pins and needles sensation on the crown and suboccipitally, and also down the back. This went away for a little bit, but now is back worse than it's been in years.

Another thing that has returned that has been gone for at least two years is painful itching and burning and lancinating pains in my arms. I used to have this so badly that I would lie on the bed and pray I could cut my arms off. I used to ice them and take Benadryl Severe Allergy and Sinus Headache medicine, which would help. It was a really bad symptom. Now, it's not that bad yet, but it HAS returned.

I am taking a lot more pain medication. The Norco or Percocet doesn't seem to work after 2.5 hours, so I alternate them. That helps. But I am still such a mess that I can't even lie on the bed and read anymore. I have loved reading so much, it's been something that has transported me, something I've really needed.

It's been a very long time since I've had the strength to walk the little traipse up to the hammock. I am thinking of asking my husband to take the hammock down, it just reminds me I can't get up there to use it, to see it sadly, limply hanging there. He was right, I should get one in a frame and put it on the patio behind the house. I think I would it use it then.

But to lie in bed hurts, my legs just fire up terribly. Enough that I just can't read.

I am wanting to cancel my California trip to see the "Agreed upon Medical Examiners" for work comp. Of course, I never wanted to go, but I was told it was necessary so there would be no "interruption" in my benefits. I don't know...I wish they'd send those doctors to me!

So, this naturally leads me to thinking about the extraction fusion that I'm supposed to have at The Chiari Institute in NY. My situation is that I don't know anyone who has had what I've had. At least, not and survived. Now, I'm sure they are out there, but I haven't found any. I started a message board for those with Jefferson Fractures, and no one has come forth. And it's not just the JF, but the "atlanto occipital dislocation" (skull came loose from spine) as well.

So, I don't have a single person to discuss how they feel, how they progress, if they've had surgery and the results, all of that. I'm sort of a loner out here and I can't say, like others can, so and so had this surgery and has done well.

I "can" say that, because I know people who have had this fusion of course. But they didn't start with what I have.

Thus, deciding "for" surgery is certainly a big leap of faith. It is for everyone. But for me, it's hard to hang my hat on someone else's situation and imagine that could be my results, as well. I don't like being special.

Even with my world-renowned doctors, I'm special. As I've said, Dr. B said my situation is "off the charts unusual." It's wonderful to at least feel validated, that a surgeon can say, essentially, you have a reason to feel like you do.

But in the back of my mind, I know without a doubt that the fusion they do has never been done on someone with my set of issues. So, this all adds to my sense of doubt, as well.

Where I need to focus is on my faith, that God would not have led me, almost miraculously, to this NY doctor if that is not the path I'm supposed to take. That God will be working through this surgeon. Once I can start keeping those thoughts in my mind and words in my mouth, I think my decision will be easy.

And I can do that now that I've laid it all out on the table here.

Another thing that haunts me is the thought of the halo I have to wear 4 months (or maybe more) post op. I get claustrophobic and anxious in the CTO vest sometimes and rip it off. There would be no such option in the halo. I know I'm focusing on the negatives here. Perhaps the feeling of stability and relief of symptoms would be so heavenly with the halo and fusion that I would welcome it all. THAT is what I need to focus on, and I will be trying.

And dear friend, please do not worry about me. Tomorrow is another day, tomorrow will be great, and if not, the next day will.