Tuesday, March 24, 2009

one more thing for the list...

This may sound strange and morbid, but so be it.

I feel a need to write a love letter to my husband of 36 years before I leave, in the event that I do not come back.

We all know that surgeries are risky and these guys will be drilling near and stretching my brainstem. My neck could break again when they do the traction, or my skull break loose from my spine (because it did that originally in the surgery....I don't want to worry anyone reading here who is about to go for the ICT...these things do not happen to those without broken necks. But I was told last time that my neck breaking "could" happen. )

Anyway, we just don't know, and the words that I'd say standing in airport getting ready to go through security would never be enough to express all the love I have for this wonderful man.

I want to write a letter to my son, too. Then, I'll let my sister know where they are hidden, just in case.

I don't feel any premonitions, or I wouldn't go. In my mind, I am returning home and doing remarkably well. Lots of years left.

But, it just is something that feel important for me to do.

And just part of the story.

So it begins...

If I'm not answering emails, there is a good reason. I always spend at least a couple of hours in bed during the day, and being too long at the computer causes too much pain. But...

There is so much to be done before a surgery, as so many of your readers know.

I need to do another 24 hour urine test, now that I've been on the daily Forteo injections. They will also draw blood for tests to see how the Forteo is doing.

I need to have an echocardiogram done. Also an electrocardiogram, a stress test, coagulation studies, basic metabolic profile...
I need to get a letter of medical clearance from my primary doctor, and a letter of clearance from my endocrinologist. I need to fax these, plus the echo readings, to the surgeon in NY, plus I need to bring these with me to NY to give the nurse at pre-surgical testing.

My PTP and I had hoped I'd get in to see a neurologist at OHSU in Portland, two hours away, before my surgery but at this point, if it hasn't happened, I don't see it happening. With getting prior authorizations and considering busy schedules, it's not likely. I'd hoped to establish a connection with a neuro before I came home with the halo, in case I had problems with it.

In NY, on April 27, I will be getting:
MRI Brain
MRI Cervical
MRI Lumbar
3D CT head
CT Cervical
xray cervical

Personally, I need to get a phone with larger letters and 300 minutes to take with me to NY.
I need to get some more "no rinse" soap for my stay in the hospital.
I want to go to the thrift store and pick up some strappy T shirts that can be cut at the shoulders and pinned back together to be worn beneath the halo.
I need to get my head shaved.
I need to also pick up at the Thrift store some large shirts that will go over the halo vest, that button or zip up in front.
I must reserve hotel room, buy airline tickets, figure out expenses and send them to work comp (I am so blessed that work comp does pay my expenses and will send me some money to cover them before I go).

Put together my little phone and contacts book to take with me which also includes the cab numbers and such.

I need to buy a new pillow and then sew a seam down the middle, with equal amts of fluff on each side of the seam. This is said to aid in comfort with fusion surgeries, yet I'm not sure about the halo.

Write down contact numbers for my husband...

The checklist grows.

Friday, March 20, 2009

Once again, a surgery date!

I recall in the Fall of 2007, when I posted that I finally had my surgery date for my tethered cord...Nov. 21.

Today, I got my date for my CranioCervical Fusion. April 28. It has a nice ring to it. It looks good, if you know what I mean. On this, the first day of Spring, April 28 looks, well, fresh and springlike, denoting rain showers and flowers and trees budding forth. New life.

I feel very good about this surgery. I've been a long time waiting for it...it's been five years since I broke my neck and suffered AtlantoOccipital Dislocation. I haven't had any surgery for those things yet...finally, now, I will. It must be God's timing.

If you'd told me back in 2004 that I'd have to suffer with pain for five years until I finally had treatment for the drastic injuries I'd experienced, I'm sure my mind would not have wrapped around that. Back then, having most recently been very active, very healthy, very strong, I couldn't imagine being laid up in a month.

In fact, I recall that when I got back online for the first time and pecked out an email to send to family and friends, I'd told them I'd broken my neck, but to not worry, I'd be back to normal in a month.

No, back then, I was being told that it would be a long recovery, but I would be fine.

There are people reading this who, amazingly to me, have been right there beside me every step of the way. Folks who lived close by and who brought cooked dinners to my house for my family for a month. Others who supported me through emails, as I dealt with confusion about my brain injury. In fact, I believe April 28th is the day, 5 years ago, that my wonderful, 18-year old border collie, Ty, died, and my dear friend Margo stayed with me on the phone, me sitting on the kitchen floor with Ty, she talking me through it all, for hours while I waited for the vet to arrive who would put the old dog out of his pain and misery.

Alot has happened in those last five years. It has all been a fight and I do not really believe the fight is done. In fact, it could just be beginning. But, to get treatment, to get to this point of having hardware installed in my skull and spine to hold my head up, has been tied up with a ton of self-advocacy; prayer by the bucket-loads; and the strength of my many friends and family.

My sister in NH has been rock-solid through all of this, listening to me rant about this and rave about that...coming to NY to be with me for the TC surgery and again to help me get through my follow up appointments. Our emails fly back and forth every day, year after year.

So...I have much to do to get ready. I need to figure out exactly who will be my travel companion, who will be at bedside. Who will take care of me post-hospital discharge if I do not get into the rehab center. I will wake up from surgery with a halo ring pinned into my skull, supported by a vest. Pin sites will need to be cleaned every day as long as I wear it, for 3 or 4 months.

I remembered tonight that I will need to shave my hair all off before I go to NY. I don't want any problems with my hair getting into pin sites and infecting them. I bet my husband will enjoy working with the clippers on me when that time comes!

I have a lot of tests to have done here locally before I go. Cardio and blood/urine tests and such. I hope to get in to see a Neurologist in Portland at OHSU to discuss my needs when I get home from surgery. And to discuss the possibility that I have Autonomic Dysreflexia.

I am so far behind in emails that I'm about to give up trying to catch up. I am blessed with so many friends.

Yes, today was the first day of Spring, and here in the Columbia River Gorge, it was an iconic day. The breezes carried wafts of new, green grass on the hills. It just "felt" different today. And I felt different.

For so long, I admit, I've feared this surgery and the halo. Feared the pain. But now, I am getting this nudge to cowboy up and let's get going with this. I'm looking forward to it, even to the halo.
I see that I will have the halo off in August...my hair will be starting to grow back. And Fall will be a blessing. Hope looms on the horizon and fills my very pores.

Thanks for standing by me through it all. As I go along, I'll keep updating here. When I started this blog back in 2007, I thought it might be interesting because I'd be in a halo soon. I thought it might be valuable to write of my journey through the time of being shored up in such an apparatus. Then, as time went along, the surgery kept being moved ahead, further out of reach.

Now, I'm almost there, to the starting point I'd imagined 2 years ago, where I'll be recording the triumphs and challenges of life in a halo. Thanks for coming along for the ride.

Tuesday, March 10, 2009

They claim our hearts forever...

An email lay in wait for me yesterday, innocently resting in the Inbox.

Who'd know such a benign-looking title (something about pics that came from a cell phone) could hold such emotion for me.

Yes, they were of Shadow.

My dear Shadow...I think of him every day, I go to sleep each night imagining I am brushing him and tacking him up for a ride. I dream of him every night. The exact outline of his various color patches are engrained into my memory.

No wonder he won't slip away into other pastures where I could just forget about him.

He's just a horse. It's been two years since I left him. Why, oh why, is it so hard to let him go?

Oh, I am so happy for him, the home he has, the people who love him and work with him. He's 18 now, unbelievable to me that much time has gone by. We were partners for 12 years, the longest I ever owned a horse.

The pictures show him so well-cared for, a recent bath creating an unusual sheen on his brilliantly white coat. The text accompanying the photos tells of how much he is loved and how much he is teaching his rider. I'm so blessed to have been able to give him this home, when I could no longer ride or care for him.

But, oh, how seeing his photos breaks my poor, ol' heart. How I recall the days when I'd slip out to the barn in the twilight and together we'd ride through the rangelands, me bareback and he with only a halter on his head. Or I'd saddle him up and take a moonlight ride...or load him in the trailer to climb steep mountain trails or chase cattle to places they ought to be. How he did love to chase cows! Just writing about it brings a gulp to my lips, tears coursing down my cheeks, nose is dribbling and my throat is burning!

He's an English gentleman now, being ridden exclusively English. His tail carried a French braid in the photos yesterday. I don't mind...this indicates someone is loving him, and wanting to please his owner. That is good stuff.

Sometimes, I dream that when he is too old to ride, I will bring him up here to live out his years in my back 2 acres. But I have no hold on him now, and I can see that connection between his new owner and him, and besides, California is a lot nicer place to retire, with rich "parents" than up here in the poor Washington mountains.

I still wonder, though...

...does he ever think of me? Wonder where I went? Wonder if I'll come back? Remember those days as a ranch horse, sweat on his neck showing the honest day's work he'd done? No English saddle but a stock saddle, a chinks-clad rider, a rope at the horn, a trail to climb. Turned out with all the other ranch horses, bringing the whole herd to the gate when he heard my whistle.

Saturday, March 7, 2009

More Mt. Adams

Saturday drive

Dr.B emailed me right back, saying the surgical coordinator would contact me and set a surgery date. I'm so glad. This is none too soon. In fact, it is 5 years past the date of my injury (Lisa, Laurene, can you believe it's been that long since you came to see me lying in bed and speaking v-e-r-y slowly?) and it is 1.5 years past the date I had my tethered cord surgery, when I thought I'd be going to NY in another month to get the fusion...a long wait...

His saying this shows me clearly: no more obstacles. Unless pre-surgical testing throws a wrench in the works. I was afraid he'd say he wanted me to have a few months of Forteo (I am now giving myself daily injections of Forteo) or something.

I feel right in every way about this. I know this is the time. I'm getting worse.

Today, we went for a drive and it was so incredible, the scenery while listening to a great CD, one that just came out with 50 cowboy poets and musicians from the first 25 years of the National Cowboy Poetry Gathering. The music took us back to places and times spent with so many friends. I attended this event for 13 years. I can't go now, because of my health, but oh, how I miss it. The music just transported us as we drove along with glorious Mt. Adams luring us in a north-westerly direction.

We stopped for lunch in the very small community of Glenwood, very near the mountain. The winds coming off the peak was powerful and it shook the little cafe. Mt Adams, by the way, is the US's largest mountain in the lower 48, in terms of mass. It is high (higher than Mt. Hood) and snow-covered, but it is also very wide around the base. This gives it the most land-mass. That is the old fellow in the picture above with a comet flying past. This is about how close the mountain looks to the town I live in.

We drove on home a different way and every where we look in this area we live in is breathtaking. Waterfalls were abundant...wind on the wide Columbia whipped up waves as if it were the surface of a stormy ocean we were viewing.

We were gone about 3 hours, I wore the CTO the whole time I was in the car. I have to take it off to eat, it's very difficult to try to eat in it, as it has a chin rest and limits how much the mouth can open. I knew things were hurting...I knew the instability combined with the rocking of our car (tho' it's a nice, smooth car)...going around mountain curves, it was all a bad combo.

So, as soon as I got home, I laid down for two hours. I couldn't sleep, the pain was too bad in the back of my head, even though I was loaded up on oxycodone. Then, I got a familiar sensation, and though it is familiar, I was feeling it at an odd time.

I've written here, I'm sure, about the sensation I get when I get worked up, stressed, too happy, any emotion or excitement, no matter how small. It's a burning, prickly feeling all over my head, and I get sweaty from the neck up. No other part of my body is hot or sweaty, only my head.

I always get this when I allow emotion of any kind (like when I learned the good news on my test results, I could not allow myself to do a "happy dance" or get too joyful, I had to have control over such things and smile and just be glad)...or also, when I try to do some housecleaning. I have taken my blood pressure after these "events" and it is always spiking and for no reason. This seems like a classic example of "autonomic dysreflexia" but I have not had a firm diagnosis on this yet. That is what I'd hoped to find when I tried to go to the new neurologist last week.

Well, today, it came on at a very strange time. I was lying in bed, I was awake yet very calm, not thinking anything "stirring," and I had no reason to feel stressed or happy or sad or whatever.I have had this triggered before just by thoughts of slight excitement or sadness...but this was not what was going on. I was more drowsy and resting...

And it all overcame me. Painful hair (piloerection); prickly scalp and painful burning all over my head, and that sweaty head too. I am sure my BP spiked. And there I was, I'd been lying down very still, very calm and peaceful, for 2 hours! Absolutely nothing brought it on.

When I studied AD, I found that 80% of quadriplegics have AD. Now, I really had that sense that I know what they experience. They are not moving...they are probably lying in bed, and have just a full bowel, or a contricted catheter, or even a non-toxic stimulus like I had, and the BP spikes, and these classic symptoms occur.

I got up from bed and went into the living room and sat down in the recliner, and that seemed to help.

Like I said, it is none too soon for this surgery. I think God is letting me know clearly: it's time.

Friday, March 6, 2009

Good news!

I just found out the 2nd test for N-telopeptide came back normal! Thank You, Jesus!
Thanks so much for your prayers. This means the myeloma scare is over, and I should
be able to proceed with the fusion surgery. I just wrote Dr. B, and I'll let you know what he says.

I didn't realise the burden I was under for two weeks with this faulty test result until I found out I do not have myeloma! Again, Thank You, God!

thanks to all of you...I had to let you know right away!

By His Grace