Friday, February 27, 2009

Of deer and dogs

Mickey makes his way to the French doors in the dining room every evening, right before it gets really dark.

The direction his long nose takes and his kind eyes reveal what holds his interest. He is scanning, carefully, the woods on the hill behind our house. Every night, now, he comes.

I know what he's looking for and it causes a whimsical smile to cross my face.

Mickey is part-Dachshund (standard size) and he is all boy!

When we had about a foot snow, there was a day when I was outside and heard barking up behind the house. I walked to that side, and saw such a delightful scene.

Two little does that inhabit our woods (we wonder if they were "calved" up there last year) were nuzzling through snow, looking for acorns on the other side of the cross-fence Pete had erected to keep the dogs on the lower half of the property.

Mickey, ever-exuberant Mickey, was goading and teasing the largest of the deer to play with him. He raced back and forth along the fenceline, barking as he went, and she would sweep down from the bunch of trees where she'd sought refuge, charging at him as he ran past.

Soon, she was matching him leap for leap, she on the uphill side of the fence, he on the lower, they ran back and forth, only a few feet separating them, in a match of joie de vivre.

I couldn't believe my eyes, to be offered such delights to watch. I hobbled to the house and told Pete to "Quick, look out the back window!" He did, incredulous, as well, at the sight of these two strange playmates.

That night, they played for about 20 minutes, until both tired and the darkness settled in.

I watched over the next few evenings as Mickey came to the window in the door, scanning that hill for his "pals."

One evening, we were driving home from town, and a quarter-mile down the road from our house, we saw the two little does crossing the road, leaving the creek where they'd watered and heading up the hill. I wondered if they were going to our house to play with Mickey.

Sure enough, later on, Mickey let me know the deer were out there, so I opened the French doors and let him out. Speeding up the hill toward the deer on the other side of the fence, he startled the bigger doe, who jumped the chain-link, perimeter fence into our neighbor's yard.

How amazed was I when I next saw her immediately return and jump back IN to our property! She began again to race back and forth with our little black "whirling dervish" of a dog. They truly were the picture of "fun!"

Each night, now, again Mickey is at the doors, same time, each night.

Last night, I only saw the smaller doe, the one who had never played with him. I let him out, he chased her a few feet til she easily flew over the dog fence, and then, to my wonder, she began learning how to play with him, too. She never got to the point of racing back and forth with him, but she charged him playfully from out of the trees, retreating back to her shelter of oaks when he'd run a distance from her, and charging back out at him, coming within 2 feet of him, when he'd race back, barking.

I have tried to take pictures of this, but there is not enough light that time of night. I have lived with dogs and deer all my life and I have never seen anything like this before. And the deer have good instincts...even tho' Mickey would chase them for all he is worth, I don't believe he'd hurt them if he had the chance. To him, it's all in good fun, and I guess even deer need a little amusement to pass the time until the days grow longer, the green grasses fill their bellies and life doesn't mean full-time searching for soggy, tasteless acorns upon which to subsist.

I've included a photo here of the larger of the two small does, the one who really knows how to have a good time! She is poised at the gate in the cross-fence which serves as her playground with our silly dog.

Thursday, February 26, 2009


Oh, and thanks so much to those who have commented recently as I shared the test results and that whole situation. Your words really do comfort me. I am blessed beyond measure to have such caring friends, family and e-quaintances. When you post a comment, it warms my heart to know you are there, reading and caring...and praying.


Oh that hit me hard!

Yesterday, the mail brought something unexpected.

At the very end of January, an event is held each year in Elko, Nevada: the National Cowboy Poetry Gathering. I have performed there 13 times (I think) since 1990. Cowboy and ranching friends come from all over the West each year, and it truly is a reunion of comfortable compadres of the "cowboy tribe."

This year celebrated the 25th anniversary. I was asked to come, but my health would never allow such a thing. I had to decline, suggest someone else in my place (which gladdened my heart to do so).

I didn't think I minded so much not going. It was okay. That is a part of my life that is gone, has ended. It's okay.

'Til yesterday. And I unfurled the large poster from the event, sent to me by the presenters. Signed by most of the performers there this year. Many with private and personal messages that caused tears to rain down upon the felt-pen-ink.

With towel in hand to daub at the watery blotches, my tears came profusely, I felt so loved. I read over and over how much I had been missed. The wall that I had built up between my feelings about not being able to do this performance art that had once been such a big part of my life, between those feelings and the outside world, came crumbling down in shambles of shattered stone and faulty mortar.

My nose ran and my eyes ran, and I choked up and read and read over and over all the notes written, and the faces of the ones who held the pen came into my remembrance and I imagined them leaning over the table, signing poster after poster (I've done this each year I went, as well. Posters are given to contributors to the event, supporters, etc) ad nauseum, and then came one with a note that it was to me, that (I suppose it said) my health was not so good.

It's featured on my office wall now...what a great painting by cowboy artist William Matthews, the bit on the vacquero horse is exactly like the one we have, attached to a bridle and hanging from a hook on one of our walls.

It meant alot. And still does.


Tomorrow, a new med will be delivered to my door, and thus will start an automatic home delivery of this new prescription, to my house, by UPS, every 28 days.

Dr. Madison of OHSU has prescribed for me "Forteo," a different treatment for bone loss. Where all the other treatments I've received over the last five years have been bisphosphonates, this is a hormone-based therapy.

It is administered at home, by me, by injection.

Daily. I'm not scared of this or worried about it. I gave shots almost daily to horses for most of my life.

This will be a treatment plan to where I'll be on this medication for a bit before the fusion, and then I'll be on it during the recovery stages, with hopes that the added medication will help with the bone graft and fusing of bones, bones around screws, bone growth around the cadaver chips. Etc.

So, next Monday, I have an appointment back at OHSU (in Portland, 130 miles away) with a nurse to teach me how to give myself injections.

catchin' up's been a slow, I felt pretty good, but the first three days of the week were rough. I felt so incredibly weak, so drained of any energy to even think or read, that I laid in bed for most of those days. I slept hours and hours during the days, very light but very sweet sleeps.

I woke up in the middle of each night with pain nudging my eyes open, I didn't sleep well, pain kinda does that to a person, huh? I would get up early, feed the dogs, plug in the coffee, turn on the electric fireplace in the living room and then the TV to catch the morning news.

Shootings, stabbings, fires in Portland. Tagging on walls and churches. People driving into buildings (we've never lived anywhere that we see this reported so often. Buildings in Portland do not seem safe from errant vehicles!).

Monday, I took in the jug for the urine test for N-telopeptides. As you know, this is the re-test because the first time came out way too high. I told my husband, when I took the jug into the hospital lab, that this test was a big one. It either comes back showing the first one to be in error, and thus allowing me to schedule the surgery I've been waiting years comes back with some major problems and the fusion gets put on the back burner as we try to deal with what a 2nd test with the same results will throw us.

Today, well, You won't believe what happened.

I had an appointment with a new neurologist. She is in the same office as the neurologist I went to about 18 months ago. I did not feel this gal listened to me at all, I didn't feel a connection that I needed when I'm talking about MY skull base and my brainstem.

AND I went to this office a couple of weeks ago where I felt a bit "rudely treated" by the neurosurgeon there.

But, I feel I need a local neurologist. I don't have anyone close by who can tend to me when I come back from my fusion surgery in NY. If I have any problems, if I have any CSF leaks or problems with the halo, I need someone other than my PCP lined up.

AND I want to verify or rule out if I have Autonomic Dysreflexia. Dr. B, my surgeon, said I need to find this out before surgery. I don't think there are any tests for it, I think you just tell your symptoms to someone who knows what it is, and they can tell you if this is what you have.

So, in talking with my good PCP, we decided maybe I'd try this closer neurological office again, there is one more neurologist in there I haven't seen (the main doctor in the office), nurse wrote in for authorization from work comp, I waited a few weeks and it came back with the okay...set up an appointment, got up early and showered and had my notes all ready for questions for this NL (neurologist-- we sick folks just have to use abbreviations as much as possible!).

I walked in and the waiting room was empty. I spoke with the front desk gal, and was told that my appt was NOT with the NL I had not yet seen, but with the NL I had already seen! The new NL I was hoping to see was out all week.

It turned out that the medical asst arbitrarily scheduled me with the NL I'd seen two years ago and who did not listen to me at all and gave me a prescription for Topamax AFTER I told her (at same appt) that I have osteo and the pre condition to bone cancer. On the Topamax was a big black box warning to not prescribe this med to anyone with bone disease, and when I called my bone doc/cancer doc to ask, he called me right back, frantic, "No, I do not want you on that med! I know all about it and I do not want you on it."

It verified for me what I knew at the time, when I was talking to her, she was not listening. She had previously done an EMG on me, and also seen me in a "meet and greet appt" so I felt I had enough to go on. I see a lot of doctors. I know the ones who are interested in you and in helping you. She wasn't one of them.

So, there I stood in my CTO and feeling crappy, but had made the mental effort to to get myself UP to try to establish a good connection with this NL!

When the gal at the desk told me it was with Dr. #1, not Dr. #3, I said, "How did that happen?"

She said she didn't know, and she went to find the MA. I waited and when she came back, she said Tracy would be out soon to talk to me.

Frustrated and not afraid tos how it, I asked, "Who is Tracy and why do I need to talk to her?"

"She's the MA who made your appt."

And I said, "I'm not waiting for her. I hurt right now and I'm not up to waiting for her. But you tell her that she SHOULD NEVER DO THIS AGAIN TO ANYONE, ESPECIALLY TO THOSE OF US WHO ARE SICK! "

I walked out feeling confident in leaving. This office is 70 miles round trip for me to reach. And it looks like I'll have to talk to my PCP tomorrow about trying for a different neurologist in a different city, twice as far away.

In spite of this, we had a nice day anyway, together in town. The sun was out, a nice change from the weather the last couple of weeks. We ate lunch at "Skippers."

It seems like nothing about arranging this surgery is easy. I don't know why it has to be so hard.

Thursday, February 19, 2009

my apologies

I know some folks check this site often to see what I might have to say, how I'm doing.

I apologize for not posting for nine days.

I have been so much weaker, I find it harder to sit here at the computer and write. Then, the further behind I get in posting, the more monumental the job seems.

Since I posted last...

When last I wrote, I was eagerly looking forward to my endocrinologist writing the letter to my neurosurgeon in NY so that we could schedule my surgery. The surgery was first on my mind. I have gotten myself all psyched up for it, ready to go and get it done and even if it takes a couple of years of recovery and a lot of suffering on the side, I had (and still have) mental images of chickens in the back yard, maybe a couple of goats, you know...dreams, little ones, of "life post fusion."

My endo, Dr. Madison, had me do 2-24 hour collections of urine for 3 more tests. He said he didn't expect anything to change his opinion, and if it did not, then he would say that I should be good to go for the surgery. I did not know exactly what he was testing for, but I did not expect anything to change. I took in the jugs and waited for Dr. Madison to write the letter I need him to write.

On Feb. 11, Dr. Madison called. He said that there were some bad results to one of the urine tests, the N-telopeptide. He said they were high. Then he said, "I mean, they are three times higher than normal! I don't know if your MGUS is factoring in here, or what."

[I've written before that I have "monoclonal gammopathy" (MGUS) which is a precondition to multiple myeloma, frankly, a very bad cancer. Dr. Fu, my oncologist who tests me twice a year for the rest of my life on this, had told me before that I have only a 25% chance of this evolving into full -blown MM between now and the next 30 years. I have not been worried about this, feeling like I had other things right now on my plate and certainly God wouldn't throw this on there, too.]

Dr. M said he wanted me to re-do the urine test. He said that maybe it's a mistake, and he wants to use a different lab, one he uses all the time. He wanted me to do the collection the very next day, felt that was important.

Well, that didn't happen. The local lab said they do not have an account to send anything to the lab Dr. M requests. I knew I had an appointment with Dr. Fu on Feb. 17, so I decided to wait until then.

Tuesday, I went in for my appointment. Dr. Fu was his wonderful, kind self, and wanted to know how everything turned out. I filled him on everything that we'd learned from Dr. Madison at OHSU, that my bones are "not that bad," and that Dr. M feels I should do well with the fusion.

Then I told him about the urine test that came back with such a bad result. Dr. Fu said that that is an endocrinological test, and not something that he knows anything about. I asked him if the MGUS had evolved into MM, would that cause this on the N-telopeptide test, and he said, "Multiple myeloma changes protein readings." I thought that was a strange answer, one I didn't quite "get," so a bit later, I asked it again, and he said, "Multiple myeloma changes protein tests."

Later, thinking about this at home, I "got" what he meant. That if the test for N-telopeptide is not normal, it indicates MM. Oncologists probably have lots of different ways to say hard things nicely.

I also told him, "Well, I'm figuring I have to settle this whole thing about the MGUS FIRST."

And he said, "Yes, that would be first."

I said, "Yeah, because if it has progressed, then I will have to abandon the idea about the fusion for awhile." (multiple myeloma has a survival average of 3.5 years after diagnosis)

And Dr. Fu said, "Yes, that's correct. That would take priority over everything else."

Then he ended on a good note, as if taking a deep breath and lifting up his posture and said with a smile, "The great news is your bones are not that bad! I have to give you a hug!" (He's never initiated the hug before!) and we did just that.

We hugged, a good hug. He's a good man.

So, now due to logistics, etc, I'll be collecting on this Sunday and then taking the jug in on Monday and it's all set up for it to go Dr. M's lab. Dr. M told me that if I did not hear from him 8-10 days after I submitted the sample, then to call him and find out what is going on.

If you need something specific to pray about, please pray that this N-telopeptide test comes back normal, clearly showing the first one was a mistake. The Lord willing.

So, this has all been on my mind, more than I care to admit. I have been good about these things before, shrugging off the whole MGUS thing and claiming that I just will not think about it or worry about it because I will not be one of the ones whose MGUS will evolve. Like I said, my plate's full.

But this time, it seems different. I pray I'm wrong. Please, Lord, let me be "thinking about this" all be for nothing.

But most of all, let me be filled with grace no matter what the journey is that You have chosen for me.

Tuesday, February 10, 2009

oks sbedtiy enuka

Here's a riddle I have not yet solved...

What do you think this title means?

A friend recently sent to me the first email I sent out (to her) after my injury in 2004. It was five days post injury.

The title: oks sbedtiy enuka

The text: U; cab;t di enua...i can't do eimla so send me our numbra nd I'l'l call sosory, lv, v

I can figure out the second part of the text: "I can't do email so send me your number and I'll call, so sorry, love, V."

But that title and first part of the text bewilders us. We've tried putting our fingers on the wrong keys...doesn't help...

What gets me is this is 5 days post injury and no doctor had ever spoken to me or my husband (my caregiver) about brain injury whatsoever.

Some reading here might have come to see me as soon as I got home from the hospital, and recall when I spoke so slowly and paused between words for long periods. I didn't know I was doing that, but I've been told that was how I was speaking.

Sorry I have not been posting much. I want to write more, but have been feeling so weak, and experiencing a lot of pain. I'm still waiting for the endocrinologist in Portland to write the letter to Dr. B in NY so we can schedule the surgery. All in God's good time!

Wednesday, February 4, 2009

The pungent smell of pines

Eight years ago, we were living in a small house in a dark canyon in northern Washington.

Between ranch jobs, we were renting the little place that had been built 80 years before, and which sat on a few acres, hosting a rickety relic of a barn. We fixed up a stall in the barn for Shadow, my horse, got a goat to keep him company, crafted a ramp up into the stall from the corral we'd fashioned from our own Powder River stock panels. We were home, at least for a few months.

Frugality was the word of the day, and frugal we were. Tossing chunks of pine through an access window, we filled a basement room with firewood we'd cut on the nearby National Forest lands, and kept the wood heater down there humming.

On the coldest nights, I'd leave the door to the basement open, so the heat would more easily creep up the ladder that accessed those netherlands. It was a sloping ladder/stair affair, crafted possibly by some past hippie renters. No one with any common sense would have built this contraption!

One evening, my husband arose in the dark to go to the bathroom down the hall. Our old Border Collie dog, deaf and almost blind, was lying in the hallway at the top of the cellar stairs, since the door was open and the heat was wafting up from the percolating woodstove below. In an effort to keep the electric bill as low as possible, I'd turned off the single light bulb hanging from the ceiling below, even though, for safety reasons, I'd been cautioned not to by my pragmatic cowboy spouse.

In the darkness, my husband tripped over the dog, put his left hand out to steady himself on the wall, only to find where he was hoping to stabilize himself was actually the open doorway! He fell straight down into the cellar onto the concrete floor below. I found him sprawled down there, at the bottom of the ladder, instructing me to call the paramedics because he could not move without excrutiating pain.

He'd broken the top of his femur, at the hip, in four places. He was in bad shape.

Days later, when I brought him home from the hospital, he was wheelchair-bound, unless when he was sleeping or resting in the recliner in the living room. He progressed slowly, from the wheelchair, to a walker, to crutches. It was a very long, difficult winter.

Due to the surrounding, deep snow in an area known as "Early Winters," he was housebound and would wheel himself to the kitchen windows, which were lower and allowed him to see a bit of what was going on outside. I knew his days had to be long and boring, so whenever I went anywhere, even just out to the barn, I would come back and tell him all the details. To provide a few dollars, I was driving draft teams at a local lodge, pulling bobsleds-full of tourists up through the mountains under the stars of a winter night.

I knew that he would smell the horses and the hay on my clothes and in my hair when I came home, and that I could bring the world in to him, make it come alive, by telling stories of all I'd seen. When I'd go out to the ramshackle barn and be with Shadow, clean his stall and feed him, play with the goat, I'd come back in with stories of squirrels I'd spied, footprints, any little thing that would keep my husband interested and entertained.

Today, now I'm the one who doesn't get out much.

The other day, my dog Mickey jumped up on the bed with me as I rested, and he nuzzled my neck. I smelled such a strong pungency of pine needles. It was heaven. I breathed in deeply, nuzzling him back, and enhaled the scents of the foothill woods outside our door. He transported me in a way he was certainly not aware. What a delirious and heady scent of needles and pine cones and fresh air encircled Mickey's neck!

You get things where you find them.

Been doing better

I have been wearing my CTO vest to bed at night.

It takes a bit of getting used to. But the benefits outweigh the initial discomfort.

I simply can't believe how much better my "below the waist" symptoms are now that I'm wearing the CTO at night! This morning, there has been none of the pain in my hips, legs and feet. And I sleep much, much better because pain is not waking me up. What a strange thing to wake up without pain!

Before, I'd wake up each night with a lot of pain and having to go to the bathroom. I'd get up and be in so much pain in the hips and ... er...uh...backside, legs and feet. This is all tethered cord stuff, and although my spinal cord is no longer tethered after my Nov. 2007 surgery, I still experienced this immense pain that is impossible to explain. And tremendous weakness to where I could barely stay upright and walk. This has been going on each night for, well, since my injury almost five years ago.

I'd take a pain med, and then lie in the guest bed in agony waiting while it took hold. I used to sit up at the computer and answer emails or play solitaire until the pain passed, but now, the instability has progressed to where I need to lay my head down as often as possible.

That might hold me until about 3 hours had passed, then I'd wake up in tremendous pain again, take another pill, wait for it to help...maybe catch a nap in the morning....but all in all, it would take until late afternoon for the pain medication to finally catch the pain, and I'd start to feel a little bit better.

One can only imagine how we must bend at the neck, both laterally (sideways) and in extension and flexion (front and back). I know my whole life through, I've slept in an almost fetal position, and I can picture the flexion of my neck forward during the night when I'm unaware.

Did you know that the joint of the C1 and C2 is the most complex joint in the body? Think of the ways you can hold your head, the positions you can move your head and neck, and you'd think that joint should be a ball joint, not two rugged vertebrae.

I can't recall now where I got the idea, but I decided to try the CTO at night. The first couple of nights, I would wake up at 3 am and have to strip the harness off, the chin rest was just too uncomfortable ( I bet my head, from habit, was wanting to curl forward, a VERY bad position for someone with severe functional cranial settling, which means the odontoid bone of the C2 is poking up through the foramen magnum up into the brainstem area). But now, I find it easy to wear it all night.

When I go to get into bed, I notice right there how much support the CTO gives to my heavy head, and how much my neck does not.

Last night, I slept all night and woke up at 7 am. Ah! To wake up in your own bed, and not be in pain!

Someone posted on a message board something about diagnosing cranio cervical instability. She wrote that while she having the ICT (Invasive Cervical Traction) at TCI, she was told that what she felt like when they removed the weights of the traction was part of the diagnostic information of the test. She noted that she felt how heavy her head is.

I sure had this experience as well. When they removed the 45 lbs of traction, I felt a crushing of weight onto my spine! It felt just like they'd taken the weights and put them on top of my head! It was incredibly, well, crushing! I asked the radiologist, "What did you do? Put the weights on my head?" and he laughed (I wasn't joking) and said, "No, that's the weight of your head!"

I wonder if someone with a good cranio cervical area would not so much of an intense experience. Mine was so bad they had to admit me to the hospital that night, which was not planned.

Well, the power of suggestion. All this talk about how heavy the head is, and I feel strongly that I must go lie down and get that weight off again.

One note: I faxed a letter to my endocrinologist at OHSU, asking him to send a letter to Dr. B, my neurosurgeon, with his observations of how he feels I'd do with the surgery and the state of my bone density last week. I haven't heard anything yet. I haven't heard anything back yet on the 2- 24-hour urine collections I did last week, either. I'll keep you posted.

Off to bed for me. It's 8:40 am, but I have to get this weight onto a pillow.