The Only Way Is UP

A Fond Farewell

2008-10-28T20:33:00.014-06:00

My handicap sticker expired today. Good thing. I don't want to be tempted to use privileged parking when I really don't deserve it.

Speaking of driving . . . last week I jumped into my car and took a 6oo mile road trip to see my new grandchild.

It went shockingly well. The SHOCK was the complete LACK of teeth-gritting pain. It was absolutely phenomenal!

More than other single thing, this car trip was a HUGE AFFIRMATION of why my life is 200% IMPROVED by electing to go on the operating table.

Friends, all good things have their time and place. Now that my handicap sticker has expired, it's time to say for me to say goodbye to this blog.

However, I am starting another blog with chalk-full of photos illuminating the happenings in my quirky little life . You can find me at http://gingersnapgems.blogspot.com/ OR, you can click HERE for the link. I'll be posting at that site after I return from yet another trip to the Utah Red Rock Country with gaggle of girlfriends.

Finally, I'd like to share a touching song entitled "This Scar" written and performed by Lisa Nicole Grace who traveled a similar road with her scoliosis surgery. Click HERE to listen.

Timing Is Everything

2008-10-14T22:53:00.014-06:00

Major spinal surgery is
NEVER
convenient.

For most of us,

life is full of
entanglements.

In my case,
I had three (1,2,3) kids to raise alone.

I had child care programs to run, so I could provide for those kids.

I had a mother with Alzheimer's needing my help.

I knew my spine was getting worse,
but life seemed so complicated

While I was 'doing other things', my spine got CURVIER.
Fortunately for me,
a SPACE eventually opened up in my life:

I cashed in my chips at my child care business.
This is one of 12 classrooms in my child care facility.

I sold my three children off to the highest bidders.

In every photo, the child I birthed is on the right.

My dear mom passed away.
This is the last birthday my mom and I shared together.

With some heavy burdens lifted, it was easier to
face my scoliosis issues HEAD ON.
(Of course, I was also getting prodded by my brother,
Mr. Bee in My Bonnet.)

And, as they say . . .

* * * * * * * * * * * * * * * *

MESSAGE FOR THE 'SCOLI' CROWD: Some of you really NEED surgery, but you feel indispensable in your relationships OR you simply can't imagine getting the time off work OR a million other things.

It's okay to postpone this 'Biggie' if things are crazy at the present moment and you see clear skies down the road. But, debilitating pain, a severe curve, or a rapidly progressing curve may mean that you need to SHOVE ASIDE your life. After all, nobody is truly indispensable.
If you have any of the following situations, get to a doctor specializing in scoliosis as soon as possible :

1. Curvature over 45 degrees using the Cobb Angle measurement, done by an orthopedic dr. not a chiropractor.

2. Rapid progression of the curvature. (Mine didn't progress for 30 years. Often, menopause causes scoliosis in women to begin progressing after years of staying stabilized. I think that was true for me.)

3. Pain from the curvature. (For me, it was because some muscle groups had to carry more than their share of load. All that pain is gone, gone, gone.)

Personally, I was dealing with all three issues. When I finally got on the phone to set up my first appointment with a scoliosis specialist, I was hyperventilating. Really this stuff is HARD to face.

However, it's much harder to live with progressive scoliosis in the long run. As curves get worse and our bodies get older, there are more complications and, naturally, increasing pain. A competent scoliosis specialist (NOT your run-of-the-mill orthopedic or a chiropractor) can help you evaluate the urgency of your situation. (Click HERE to find one.)

This photo was taken a week after my surgery.
I'm standing next to Dr. Cunningham
who practices with my surgeon.
(There are MANY competent scoliosis specialists out there.)

Pre-surgery

2008-10-08T16:36:00.019-06:00

Have I ever mentioned that my three children were enormously supportive with this whole surgery thing . . .
before, during, and afterwards?

(These shots were taken of my kids while they were caring for me during my hospital stay in New York City.)

I was fortunate.
They were simply stellar
- each one of them!

A couple of months before my surgery date, my first-born child Arian (-who is pictured in BOTH photos above-) surprised me with an AMAZING pre-surgery gift . . . a trip to COSTA RICA.

Together, my son and I went . . .

RAPPELLING

RIVER RAFTING

HIKING and COMING ACROSS SPECTACULAR WILDLIFE

SWIMMING UNDER WATERFALLS

FLYING IN A BUSH PLANE TO A REMOTE RAIN FOREST
ZIP-LINING

STAYING IN SPECTACULAR CAMPING LODGES

My adventures in Costa Rica provided me with a way to feel fully ALIVE and IN THE PRESENT. When I returned, I was completely ready to face my scoliosis surgery. I knew that Dr. Boachie's skill with the scalpel would provide me the means to keep enjoying my NEW life WITHOUT a debilitating curve in my spine.

* * * * * *

The lead-up to surgery can be chock-full of tumultuous feelings. Some of my scoli friends needed anti-anxiety medication just to get themselves through this stage and avoid freaking out. The scoliosis forum helps people through this - click HERE.

Another way to cope = DO SOMETHING (anything!) that takes your mental energies AWAY from the surgery. Our minds can be our worst enemies!

* * * * * *

I will be forever grateful for Arian's AMAZING pre-surgery gift that took my mind (and body) in a whole different direction. AND, I appreciate 200% his wife Jill, who was sick with a difficult pregnancy and dealing with a toddler alone during our travels. None-the-less, she whole-heartedly supported the trip.

Now, they've given me another grandchild
and I love them all the more!

Next week, I will take the five-hour drive to their home in Nevada where I'll spend a few days
cuddling the new baby,
playing with the big brother,
and lending a helping hand
wherever possible.

It will be my first time to do solo traveling
since I was spinally reconstructed.

QUALIFIER ON COSTA RICA TRIP: In CASE you wonder how I did all that activity at age 55 and with a 65* curve in my spine, I took PAIN KILLERS. Lots of them. AND, my body was lean and mean from all that pre-surgery exercising. Scoliosis pain CAN be disabling. Mine was getting there. NOT ANYMORE! HA!

Oh HECK! My NECK!

2008-10-02T20:46:00.035-06:00

There are
many kinds of
NECK PROBLEMS
with various causes.

I am happy to report, this photo does NOT represent my particular problem.

HOWEVER, scoliosis is often accompanied by some interesting neck issues.

A lot of us 'scolis' get straight necks which protrude forward in addition to our twisted backs.

"Normal" necks look like this:

Necks of the scoliosis crowd generally
(but not always)
look something like this:

Guess which neck is mine!

In other words,
us scoliosis folks have a curve where we shouldn't (in our backs)
and have NO curve where we ought to have one (in our necks).
Sigh.

I originally went into physical therapy for my afflicted neck, not my back, in the 1980s.

My P.T. would do a nice long session of cervical repair work and I would be functioning again!

A month later, I would return, often unable to move my head to the right or left.
More repair work.
Off I'd go.

This pattern continued until I developed issues in the lower spine which served to add variety in my P.T. sessions. Neck & back. Back & Neck.

Finally, my P.T. suggested the Saunders Cervical Hometrac Unit to help my problematic neck. This device provided gentle traction to my cervical spine. With ongoing use, the neck pain went WAY DOWN. It's expensive, but definitely worth it! (Check eBay!)

This is NOT me with a mustache,
but you can sse my Saunder's Hometrac Unit

Once I started doing Pilates workouts, my neck troubles dissolved completely. I figure that these exercises gave me enough muscle tone to hold up my skull + weighty brains, in spite of my weird neck.

Since surgery, that dastardly neck of mine has been blinking those old 'red light' pain signals.

On Friday, my physical therapist looked at my x-rays and reported that I have SERIOUS TROUBLE throughout my cervical spine (neck). He described the issues very scientifically and in great deal. I'll admit it was wee bit depressing!

I told him that I could GUESS my options . . .

OPTION #1: Fusion of the cervical discs.

OPTION #2: A life-long commitment to
hardcore exercises that stabilize the neck.
Mr. P.T. Extraordinaire said "Bingo!"

Well, I choose
Option #2!!!
And I plan to keep choosing it,

day after day ...

year after year!

Big Steps!

2008-09-26T22:12:00.017-06:00

WOW!

What a
breakthrough!

I've taken some
mammoth
strides
since
last week's blog.

It started on Monday when I was doing my daily hike in the canyon behind my home. My eyes were peeled for the Rocky Mt. Big Horn Sheep which like to congregate at mouth of the canyon.

Instead, I was greeted by a couple of fellow hikers and we made our way up the rocky trail. Yep! Lots of ROCKS with a steady incline.
To give you an idea of the trail, take a look at this shot taken of my daughter, her horse and Yours Truly back in the 1990s.

Okay, it's 12 years ago! But it's still MY canyon!

When we got to my This-Is-As-Far-As-I-Go Place, my friends invited me to share their picnic. How serendipitous!

The MEAL, the REST, the PLEASANT CHATTER put fuel back into my tank and I decided to accompany my friends for a few more steps.

Each bend we took, I wanted to go a little farther, because the FALL COLORS were filling my soul. (The shot on the left was taken of the hikers who shared their picnic.)

Before I knew it, we'd crossed over the river 5 times using the 5 bridges built by energetic boy scouts. The 5th bridge represents a climb of 2000 feet from the trailhead.

By the time I was back down to the 'Big Horn Sheep Hangout' at the base of the canyon, I'd hoofed it FOUR miles.

I felt like a kid with my hand in the cookie jar! I'd done something just a bit sinful, in light of my recent Spinal Surgery Maxima! My only consequence = a little nerve pain during the night.

I was ELATED!!!

The next day, I made plans to hike Mt. Timpanogos. Late September is the IDEAL TIME to hike this mountain. This shot was taken from the roof of my home in the early spring.

Notice how bare the peaks are during the fall . . .

I invited the same hiking buddies you saw in the photo with the autumn leaves. (They had fancy pedometers that could tell us our altitude as well as walking distance. Besides, I like them.)

These shots were taken at the Timpooneke trailhead.
NOTE: my dog wasn't thrilled
about doing a photo opt at that moment.

After a mile or two, the view opened up . . .

As we got farther along, the trail got steeper.

Sometimes, the rock formations formed a perfect stairway.

Notice ABOVE that I use my trekking poles.
I am NOT allowed to fall.
since those spinal fusions cost a PRETTY PENNY!
* * *
Higher up, we came across several
spectacular waterfalls packed with vibrant green moss.
No boy scouts had constructed bridges at THIS altitude,
so we picked our way across the streams coming down the cliffs.

Finally, we reached the glacier basin.
over 10.000 FT. ALTITUDE.
5.5 MILES UP
. . . and another 5.5 miles DOWN!

ELEVEN breathtaking miles in one day!
What a MILESTONE for this post-surgery patient!!!

(I solemnly SWORE to my physical therapist that I'd go no farther than the glacier basin and that promise I KEPT. Furthermore, it was ENOUGH. I was thrilled TO THE MAX.)

The last time I did this hike was 15 years ago, when my spine was about 30 degrees curved, not a whooping 65 degrees, as it was before my surgery. In 1993, I took this photo of my son from ALMOST the same location where I stood just two days ago.

With a large curvature, muscles fatigue quickly, working extra hard to hold up a crooked spine. Pain ensues. Movement is limited. By the mid 1990s, this hike was totally out of my reach.

Now, barely four months out from getting "reconstructed", I can do FAR MORE than I could possibly do for years and years.

Dear Scoliosis Friends: I realize my recovery is somewhat remarkable. All that PILATES and YOGA helped. However, the vast majority of "scolis" find that AFTER SURGERY they have a better crack at life, whether it's climbing mountains or washing a huge pile of dishes at the sink. For those of you with twisted spines, please look at these photos and consider the chance to do things you NEVER DREAMED were possible because of your crooked spine. (If you haven't noticed, I'm becoming a Spinal Surgery Evangelist.)

FINAL NOTE: After eleven miles of climbing Timp, I experienced NO nerve pain. Just tiredness. The next morning, I felt great. Maybe I should hike Timpanogos EVERY DAY!

Surprise!

2008-09-17T15:15:00.032-06:00

Well, well, well.

I do LOVE surprises

and I got a BIG one!

My New York trip was aborted at the 11th hour!

Here's the scoop . . .

Last week, Dr. Boachie, my most distinguished surgeon, was HERE in UTAH for a conference where he was coronated as the incoming president of the international Scoliosis Research Society.

After four days of conferencing, Dr. B called my cell and suggested that we get together for breakfast in the morning.

I said, "Breakfast? I have a plane to catch early in the morning so I can see YOU in New York City!"

" Well," he responded, "Forget THAT!"

So, there I was, having just zipped up my suitcase, all prepared to LEAVE in a few hours, and SERENDIPITY came my way! Within fifteen minutes, I . . .

1. Cancelled the way-too-expensive hotel room.

2. Obtained a $359 "credit" for my flight purchase.

3. Pulled out my blueberry muffin recipe to start breakfast preparation.

(NOTE: Adaptability and speed are my forte, due to twenty years of running a childcare center where everything CAN and DOES happen . . . and you'd better take care of it QUICKLY!)

Early the next morning, I packed up a mostly-prepared breakfast, picked up Dr. B along with two research assistants from their hotel and we headed over to my brother's place.*

*My bro lives closer to downtown Salt Lake City
and it's far more desirable than my humble abode for entertaining.

When we arrived, I put the doctor in charge of figuring out why the stove wasn't working while the research assistants and I cut up the fruit. Eventually, the eggs were scrambled in the microwave and breakfast was served at the bar.
(Dr. B's diagnosis of the stove was that the gas had been turned off while my bro and wife were in Europe. Thus, the microwave.)

After devouring too much good food,
I got my appointment with
the traveling physician who
answered my 1,00,000 questions.

Of course, he needs to review some current x-rays, but everything looked GREAT.

We then took a tour of the gardens around the home, which got these city slickers OOHING and AHHING.

Since the urbanites seemed to crave NATURE, I suggested a little excursion up into the nearby mountains which was met with GREAT ENTHUSIASM all around.

It only took about ten minutes to be right up in the pines.

Dr. B hiked to some waterfalls not far from the road. His non-gripping shoes were slipping on the wet rocks, but he eventually got the

UP-CLOSE EXPERIENCE

with the elements which he desired.

Soon we reached Snowbird Resort where we boarded the ski tram
that carried us up, UP, UP
to 'Hidden Peak'

. . . over 11,000 ft. altitude.

That was a real TRIP for these flat-landers!
Dr. B and his research assistants

Dr. B and myself with the Salt Lake Valley behind us.

My dear surgeon REALLY wanted to 'HOOF IT' back down to the lodge. He had NO IDEA how challenging that would be!

"I know you specialize in spines, but you gotta think about KNEES here!" I said.

As I was driving my guests back the hotel, we discussed the work in Ghana where my surgeon and sixty other physicians are doing pro-bono orthopedic surgeries on children.

FOCOS is the foundation established by Dr. Boachie to address complex spinal issues on the African continent.

If you would be interested in helping pay for a child's surgery, go here to see the children who need sponsorship. Since the surgeons' time and the medical hardware are donated, these surgeries are performed at a fraction of the 1st World pricetag. A twisted spine is not just a horrible deformity, it's a life of tormenting pain.

Dr. B. encouraged me to come to Ghana and be a part of the support team for the surgeons, when I fully recover. Now, THAT would be such incredibly meaningful service for this little Utah gal who finally . . .

STRAIGHTENED UP!

I'm Off to New York City

2008-09-12T08:42:00.041-06:00

In two short days, I will be hopping onto a plane and flying

from the Rockies . . .
NOTICE MOUNT TIMPANOGOS
which I can see from my bedroom window. I can even see it from my bed,
if I twist my spine, which I'm not allowed to do.

to the Big Apple
for a little "check-up" with my surgeon.

NOTICE MANHATTAN:
My doctor's office is located right next to the East River, featured on this map. However, there is NO BEACH, which should lower the real estate, but DOESN'T. It's obscene what I'm paying for a room.

I'm testing my level of recovery with this SOLO jaunt.
Next week, I'll report.

I look forward to walking right by
the Hospital for Special Surgery
and over to Dr. B's office on the next block.
No slippers in an overnight case,
no "Special Surgery",
just a wee little appointment.

Here's a sneak preview of an important message for Dr. Boachie . . .

Even though I'm still "in recovery",

I feel better, better, BETTER
than I did before surgery.
I definitely feel . . .

Specifically, I have less pain. Before surgery, I was popping pain pills quite regularly in order to survive. Now, I take one in the evening IF I overdo during the day.

ONE QUALIFIER: Energy is still an issue, but it's SUPPOSE to be an issue for the first year or two post-surgery, so I shouldn't whine. After all, I'm solidly into middle age, not the best time of life for getting torn apart and put back together. Such shenanagans are definitely long-term ENERGY SUCKERS. Some day, I hope to announce . . .

(No more energy suckers in my life.)

While in New York City, I'll be swapping stories with another post-op patient, Janet, who I met on the on-line scoliosis support forum - see below. We'll share a meal together and a taxi ride back to the JFK airport,
since we are both Dr. Boachie Patients from Afar.

TAKE NOTE: The National Scoliosis Foundation Forum is the BEST resource for anyone with curvature of the spine. That's where Janet and I connected. It's also a place where you can get ANY question answered . . . regarding scoliosis, that is.

An Abbreviated History of My Scoliosis

2008-09-04T13:33:00.042-06:00

When I was 13 years old,
I hit a growth spurt.
Instead of my spine growing up,
like a Sierra pine tree,
my spine became
more
expressionistic, like a Bonsai with a 59* curve.

Scoliosis Maxima!

In 1966,
during the Dark Ages
(of spinal fusions),
I was a pioneer patient,
with 8 fusions in my thorasic spine.

Following surgery,
my little 69-pound body was placed into a
plaster of paris body cast
that extended from my head down to my hips.

There was no instrumentation in those days
and so I had to lie very still, week after week,
while the bits of bone taken from my hip
grew into my spinal column.

I was hyperactive, by nature.
It was a hard year, locked up inside that cast.

When all the plaster was removed, I was pronounced healed.
(Sort of.)
The curve had been brought down from 59 to 29 degrees.
That was considered miraculous back in the 1960s.

I skipped away . . .
and went off to do my schooling, marrying, babies, and lots of high-risk sports.
My back was fine, fine, fine.

Until I started squirming in my seat around 1995.

Soooo, I picked up the pace of my fast-paced life to outrun something very much like . . . pain.

You see, at first I couldn't exactly admit
it was pain.

By the time my last child was married in 2004, it was undeniable PAIN.

Surgery wasn't an option.

I'd done that.

My brother began suggesting that I just might want to consider it.

I said absolutely no.

I did Pilates like a MANIAC.

I did Yoga like a Zen Master.

I hung upside down for hours on end,
WILLING my spine to straighten out.

My curve went back up from 29 degrees to 65 degrees.

My brother began borderline harassment.
GET YOUR BACK FIXED.
Find an expert.
Find the best guy in the world.
Your life is worth it.
I told him kindly . . .

But I knew he loved me. And I knew there was a small chance he was right. So, I went to St. Louis (Dr. Lenke). Then to Dallas (Dr. Shelakov). Finally New York City (Dr. Boachie).

The experts agreed.
I needed yet another surgery.

A BIG surgery.
That is, if I wanted A LIFE.
Was that even a question???
Of course I WANTED A LIFE.

I reconsidered my position.

And here I am today.
With massive technical assistance,
I've STRAIGHTENED UP once again.

Down from a 65 degree curve to a 26 degree curve.

Now I only have THIS to say
to my persistent & persuasive brother . . .

And I feel like THIS
as I recount my scoliosis history on this blog
and clearly see where I am now . . .

Jumpy Nerves

2008-08-28T13:39:00.027-06:00

During my surgery, legions of spinal nerves were cut. Additionally, other nerves were torn as the surgeon de-rotated and straightened my spine.

By the way, scoliosis is not JUST curvature of the spine. Generally, the spine also rotates. Can you detect the rotation in the spine on the right?

Extensive nerve damage was apparent right after my surgery. There was no feeling . . .
- on the left side of my abdomen
- across the lower back
- down my left thigh

Below the numb surface of my skin, there was . . .
a bon fire of pain
but I couldn't feel anything superficially.

Now, twelve weeks out,
the nerves are waking up.

This means, tingling skin. And, sometimes I get little BEE STING SENSATIONS. But they are short-lived, quite tolerable.

I also feel itchy all over. That comes and goes. MOSTLY, tolerable. Sometimes I have little episodes of needing to scratch every inch of my skin surface, like I'm covered in Poison Ivy. The sensation passes in a few minutes.

The BIG ISSUE for me is something I'd call

"Jumpy Nerves".

As long as I'm active in the day, no problem. However, I can TOSS AROUND IN THE BED FOR HOURS during the night because of these jumpy nerves. Kind of like my body is reacting to little fireworks going off. Not really painful, just something a little stronger than twitching.

Point is, SLEEP ELUDES ME.

("R" is for Really Restless)

The truth is, this situation has provided me with a fabulous opportunity! Twenty years of running a child care center and parenting solo left me no time for small pleasures such as MOVIES. I am now catching up on two decades of great films while my nerves "DO THEIR THING" and I shift around in my bed.

(YES. I have a t.v. in my bedroom, due to a generous loan from one of my neighbors. YES. I also have an almost endless supply of DVDs due to the hefty collection of yet another neighbor.)

After one or two movies, my sleep-deprived body says "Enough!" and I contentedly go to sleep.

NOTE FOR THE SCOLIOSIS CROWD: I have also found that anti-seizure/nerve drugs are helpful. Most scoli surgeons prescribe them for the exact kind of nerve problems I've outlined here. Lyrica is what I use (second generation of the drug "Neurontin", also called "Gabapentin".)

After talking with my doctor and
hiking up my dose of Lyrica
from
100 mg/daily
to 150 mg/daily,
I went from wanting to
jump, literally,
to
simply shifting around in the bed at night.

I LOVE MY SILVER LINING!
Now, I am not dreading bedtime.
I GET A MOVIE OUT OF IT!!!
Would I ever hang out and watch movies
WITHOUT my little "problem"?
Probably not.
But I'm thoroughly enjoying this experience!

Thank heavens for small graces!

Early morning sun beams
coming over the mountain behind my home.

A Body in Outrage

2008-08-22T12:03:00.028-06:00

In my mind,
I am well aware that I CHOSE to get my back ripped apart and put back together with a truckload of titanium (scoliosis surgery).

Somehow, the message didn't get to my body.

This is how I know:

My friend Dion, a gifted healer and recent house guest, offered to give me a light massage. I graciously accepted.

No sooner did she put her hands on my lower back,
my tears started flowing.
Like the fountains of Versailles.

Soon, I was bawling uncontrollably.
There were no conscious sad thoughts involved here.
None at all.
I simply couldn't stop this deep-pitted weeping.

After the massage, I blubbered my way through the nightly jobs of taking out my contact lenses, getting into pajamas, etc.

Then, in the dark of my bedroom, I heaved yet another round of great gusty sobs. My brain was only working on 5 watts,

like a child's night-light,

because I simply couldn't process what was happening to me.

As I awoke in the morning, my first thought was "How can my surgeon feel good about himself when he goes around tearing up and rearranging human skeletons?" On some level, I was really, really mad at Dr. Boachie. Or, should I say, my body was mad at him. All of his "work" felt like a big-time violation.

I know I volunteered to have this elective and highly invasive surgery. However, the feelings of outrage still exist independent of logic. Furthermore, I had no clue that such feelings were brewing until Dion put her hands on my back. (Thank you, friend!)

Dion, on my couch with Chica the dog.

The two hours of gut-wretching sobs cleared something in my body. Of that I am certain. Perhaps it prevented me from having a serious blitz of road rage, culminating in a smash-up. Who knows?

Now, I can NOT say that I cried myself dry. Somehow, this surgery loosened the valves behind my eye faucets. Tears continue to flow easily.

I am, however, hoping that we (Dion and I) broke my only personal Hoover Dam of Angry Waters and flushed out the Big Gunk.

Life is good.

Dr. Ohenaba Boachie-Adjei may have torn me apart, but he also rebuilt me into a bionic woman with a straighter spine.

I stand in gratitude.

My Godchild Returns!

2008-08-12T19:39:00.015-06:00

Victoria & Ginger in the Kitchen
My Canadian god daughter Victoria has come back to live with me for another year of high school. Although I've been her godmother since birth, last year we really bonded while living together.

Furthermore, Vic competently cared for me during my first two weeks home from New York. After that, I had . . .

"The Plan" provided me with a security blanket of long-term care during the first three months of recovery. Kelty and Duane (my daughter and son-in-law) were prepared to do 'over-nights' and a health care agency was scheduled to do 'day care'. Well, I really haven't needed all that intensive care. This is what I needed and continue to need: REST and lots of it! Basically, I've managed independently since Victoria left six weeks ago. Of course, I was GREATLY buoyed by calls and visits from family and friends. Plans are great, but it's good to know when to revise or toss.

Now, I'm thrilled to have my dear Victoria back. I find myself gathering energy to prepare real dinners, since she arrives at 6:30 p.m. after volleyball practice, tired and hungry. Proper meals benefit BOTH of us.

Surgery left me a bit, shall I say, 'scrawny' . The pressure is on to 'bulk up', with my physical therapist regularly charting my weight. He sings the Hallelujah Chorus when I manage to add a pound or two. Now that I'm eating meals alongside an athletic TEENAGER, I think I'll be back to proper weight* PRONTO!

* "Proper weight" is determined by taking what the scales report and SUBTRACTING 5 pounds, due to my life-time intimate companions = 18 screws and two 26" rods of titanium.

Undeniable Progress!

2008-08-07T23:30:00.016-06:00

Just after I set my surgery date, my children simply informed me that would ALL THREE be going to New York to help me through my ordeal. A collective circle of support for me, their mom. AND, a complete role reversal, since 'The Mom' suddenly became 'The Child', depending on their care and support.

Needless to say, my kids were absolutely amazing, making enormous personal sacrifices to oversee my care. And then there were the supportive spouses, doing double duty on the home front. My daughter Kelty (above) carried the lion's share of responsibility. She stayed by my side for three weeks of intense Mommy Care. Lovingly, she ministered to me, although I was a rather challenging patient in my drug-altered, pain-riddled state. (My sister Tricia was also a great help.)

FAST FORWARD TWO MONTHS:

My children gathered 'round me once again. This time, in Utah.

Kelty, Duane, Ginger, Leah, Arian, Jill

In addition to the six family members in the above photo,
there were three more who were with us. . .

Grandson Kenneth & my two granddaughters, in embryo!

I was thrilled to discover that my recuperating body was able to RALLY for this delightful occasion of togetherness. Being sensitive to my recovery, the kids made efforts to keep things 'low key'.

On Sunday, we all attended church together and then joined forces to create a WHOOPING SUNDAY DINNER. (This was MY outrageous idea. The kids would have been happy with frozen pizza.) The menu - barbequed salmon and teriyaki chicken, home-cooked beets and carrots, fresh fruit parfait, leafy green salad, consomme rice with mushrooms and onions, crusty French bread with butter and garlic. I took the role of Project Director while the six of us chopped and tossed and cooked and laughed.

After feasting, we held a little birthday celebration for Kelty and her husband Duane. I whipped up Kelty's very favorite homemade chocolate cake with minty icing, divided it into two pans and let the birthday kids do their own decorating, which they loved.

Whew! That was considerable exertion for this gal 'in convalescence'. I sensibly cozied into bed while my kids chatted in the living room. It was important to keep reminding myself that I didn't have to be in the center of everything. When I forgot, my kids gave me gentle encouragement to rest.

On Monday, we packed into Arian's car with three rows of seats and meandered up to Sundance Ski Resort for a lunch outdoors in the fresh mountain air, a stroll by the river, and a ride up the mountain on the tram.
I actually did all this! Astonishing!!! Undeniable progress! Furthermore, I happily accepted the fact that I've needed to retreat into hibernation ever since the troops left. Sustaining high levels of energy will come . . . down the road.

Right now, I just feel grateful that our little family gathering could be home-based in PROVO, UTAH instead of at a HOSPITAL in NEW YORK CITY.

Great Stuff, Not So Great Stuff

2008-07-30T20:21:00.036-06:00

GREAT STUFF . . . Since returning from New York City, I've been hiking the canyon behind my home just about every evening. Initially, just a few steps. Day by day, adding a few more. Eventually, about a mile. My dog has provided me with constant encouragement. Wouldn't this joyful little face motivate YOU?

Yesterday, I did a crack-of-dawn hike, and discovered that I could hoof it much farther with the fresh morning air. In fact, about two miles. Determination runs deep within my clan and I was ecstatic about this measurable progress.

The shots below were taken THIS MORNING during my second two-mile hike. Better than words, they speak of the inspiration I find in the canyon.

NOW, THE NOT SO GREAT STUFF: These hikes are fabulous and all, but they gobble up my meager energy reserves. I'd been warned by my fellow recovering friends on the scoliosis forum that I shouldn't expect to be back to "normal" for at least a year. Well, I never thought that applied to ME!

In fact, I'll make a couple of confessions here. Last month, I called my surgeon's head nurse and asked for a medical form so I could make it through airport security with all my titanium. My plan was to fly out to West Virginia on July 25th and honor the passing of a dear cousin. The nurse balked at my request. "Dr. Boachie's patients do NOT take to the skies two months after their surgeries." I persisted and she reluctantly mailed me the medical form.

However, as the time approached, I began to seriously doubt the prudence of my travel plans. I found myself getting so tuckered out, so bone weary, so utterly exhausted.

Me at age 8, but you get the idea.

On July 21, I finally got honest with myself regarding my limitations and canceled the trip.

I would have felt quite deflated if I hadn't made other plans to travel to Canada on August 9th. I have five amazing Canadian god daughters who are gathering in a cottage on the shores of Lake Osoyoos in British Columbia. Their birth mom insisted on flying me up there so I could lay in the hammock while my godchildren took turns giving me foot massages and making me laugh. YES! Certainly I'd be up to speed with another couple of weeks under my belt! Or so I told myself.

My darling god daughters with their birth parents.

Well, the days are passing and I'm still NOT NORMAL, as I'd fully planned to be. Yesterday, I discovered that the plane tickets hadn't yet been purchased and so I was free to change my mind. Once again, I backed out of another trip. Sheesh!

Last night, I bawled my eyes out. I want to get back into the saddle, but willpower is NOT ENOUGH. Since I have a direct phone line to my dear doctor, I called her and told her how fed up I am with being weary and depleted. She helped me a lot by saying:

1. MOST of my body's resources are being allocated for healing. Remember that.

2. I need TONS of calories and nutritionally dense food while my body repairs itself. (She knows I'm not a big eater and she wants to change that.)

3. She's going to do a blood work-up and make certain that I don't have any deficiencies playing into my exhaustion.

So, the lesson I'm learning is to EAT and keep my expectations in line with my reality. And, most importantly, remember to . . .

GO SLOW * GO SLOW * GO SLOW * GO SLOW
while my body heals .

Being a Rare Specimen

2008-07-21T18:20:00.011-06:00

For years, I "played the field" when it came to physical therapists. My back pain would become unbearable and I'd call whoever could fit me into their schedule. About twelve years ago, I found the best P.T. this side of the Rockies. My crème de la crème P.T. had abilities and experience that left the others in the dust. AND, apparently I was not the only person to observe his talents. He has been promoted about six times since I designated him the Fix-My-Back-NOW Man.

I returned from New York City with complete confidence that My Guy with decades of P.T. experience under his belt would know JUST what to do with me and my improved spine.

I was SHOCKED to discover that Mr. P.T. Extraordinaire had NEVER dealt with so much hardware, so many fusions. Yes, he's worked on a pile of patients with a fused disc or two. Their post-surgery spines look like the one on the right, with an itty bitty rod, not a truckload of hardware or twelve fusions running the length of the spine.

My peculiar status manifests itself in various ways. I see people whispering as they watch me enter the exercise room of the hospital. Somehow, they seem to already know that I'm the Original Bionic Woman, although I've not been the broadcaster. (News DOES travel fast.)

And then there was the time when I went for my six-week post-opt x-rays and I could hear a gaggle of radiology technicians GAWKING at my spinal image taped to their light-up screen. As I dressed back into my street clothes, they were counting each of my 4" screws and when they got to nineteen, I wanted to call out, "WRONG! There are only eighteen!" But what's the difference?

Later, as I was exiting the changing room, quite a few of those techies were hanging around the hallway. No question about it - they wanted a look at the lady put together with wires, screws and rods. But all they got to see was a clothed, attractive woman. (Notice that the sign between my teeth clears up any doubts. It says "ATTRACTIVE".)

All jest aside, I am truly blessed to be a RARE ORTHOPEDIC SPECIMEN and yet I can still dance with a flower in my mouth without a SINGLE SOUL detecting that I am a physical oddity. They may consider me odd for other reasons, but they'll never know that I'm put together with titanium.

At this point, I'm OVER my initial shock of being "a first" for my dear P.T. He's got to have one during his career and I get to be The Case. The two of us have a LONG road to travel together as I become officially "rehabilitated".

And I plan to enjoy the journey because,
as I truly believe,
THE ONLY WAY IS UP!

Crooked Spines & Squished Organs

2008-07-13T19:22:00.001-06:00

Most people shrink as they get older. However, people with crooked spines shrink much faster.

THE RESULT?
Squished organs.
In my case, my pre-surgerical respiration tests showed a 69% lung function. (Generally, that's what kills those unfortunates with extreme cases.)

Additionally, pressure on my stomach meant I was no match a Big Mac and fries. (You moms knew that sensation when you were 8 1/2 months pregnant.) BTW, this was NOT an asset, as you might assume.

Finally, my bladder grew tinier and tinier with each passing year. When I'd venture away from home, the location of the bathroom became a critical issue. I could last 30 daytime minutes, with luck. At night, I hoped for a couple of hours before shuffling off to the john where I kept plenty of supplies . . .

Now that my spine is straighter,

I have HAPPY ORGANS!

My innards have a little elbow room and I look forward to years of deeper breathing, full platters of food, and less time on the throne. Actually, I am already experiencing major improvements in the last category. I sleep through the entire night beautifully and then wake up in the morning and roam around the house a bit before ever seeking bladder relief.

What a JOY to BREAK THE CHAINS
that tied me to the commode!

Fireballs & Bizarre Sensations

2008-07-08T10:00:00.000-06:00

I never was a cautious personality. Quite the opposite. My favorite sports were dangerous ones, like technical rock climbing, 400 mile outdoor survival treks, scaling mountain peaks in the middle of winter and decades of motorcycling.

Twelve spinal fusions require major adjustments in my thinking pattern. Let's face it. I've only had ONE month of practice at this cautiousness mindset and I'm not very good at it. Like, when my two-year-old grandson showed up at the door last week. I was thrilled to open my arms and let that 35 pound fireball of enthusiasm come barreling into me.

An hour later, I knew I was in trouble. I could feel the left rod from top to bottom and it was the most bizarre sensation. I figured that one or more of my 18 screws had come loose and that was causing movement in the rod.

I called my surgeon's office in New York and spoke with the clinical coordinator who told me that I was only experiencing inflammation of the muscles surrounding the rod. The unusual sensation came from the muscles moving over the rod. If my hardware had come loose or had broken, I would be howling with pain and it wouldn't simply be a "strange sensation".

At this point, the swelling has gone down and I no longer feel any of the instrumentation. How can I have all that hardware and NOT feel it? I simply don't know. But, after my little experience last week, I realize how fortunate I am . . . as long as I'm CAUTIOUS around adorable two-year-old FIREBALLS!

Uncharted Waters

2008-07-01T12:55:00.000-06:00

No question about it: my recovery continues to take me into "uncharted waters". I can get up in the morning and feel like a million bucks. Two hours later, I'm staggering towards my bed.

I had this foolish idea that I was going to be exceptional in every aspect of my recuperation since I could do so many things right out of the starting gates. I ditched the walker so so early and my pain levels have dropped to the Extremely Tolerable level.

It's just that energy thing. Reminds me of being a week out from birthing a baby. I'm even losing globs of hair, which I haven't done since Kelty was born! Let's face it - rearranging my skeletal system was rather traumatic to my 55 year old body.

The orthopedics like to say that middle-aged scoliosis surgery is more invasive than a heart transplant, especially if they are revising old fusions. (For those of you who don't know it, I had eight fusions at age 14 due to scoliosis. This is why I sought out a competent "Scoliosis Revisionist" in New York City to undertake my 'reconstruction project'.)

HERE'S THE IMPORTANT THING: Each day, it's a wee bit better. I feel myself WILLING and ABLE to do just a little more on my feet. Those minuscule increments of improvement are worthy of celebration. Truly my rebirth into this new and improved body is a cause for pulling out the party hats and favors!

On the flip side of the coin,

I am indulging myself during my times of rest
(and healing).

Books,
podcasts,
music,
journaling,
delightful phone calls to old friends,
. . . and day dreaming.

With a great deal of encouragement from kind friends, I've been pampering myself with all this resting. I want to incorporate it as a part of my long-term life style.

Resting is not only agreeable ( . . . when one learns how to accept it . . .) but it's ALSO helping all those little bitty bone grafts fuse my spine. Dr. Boachie had to remind me more than once, your body can not heal with rest. Now, I get it. I'm ACCOMPLISHING something as I lounge around my house.

Pretty great, don't you think?!

My Cup Runneth Over!

2008-06-28T19:04:00.000-06:00

Garden Delights, Picked By Loving Hands

I have been given a HUGE reminder of the GOODNESS all around me. I never expected that so many people would come forward and turn my recovery into a completely delightful experience.

NOW I can say my recovery is "delightful". In the hospital, I could only think and talk about killing myself. Great improvement in my attitude, wouldn't you say? That's because so many people have helped to BRING ME BACK TO LIFE!

Just a few examples . .
* An 84-year-old friend offers foot rubs to help me relax.

* Fresh produce arrives, hand-picked by various loving neighbors.

* A childhood friend cleans my carpets and caulks my shower stall.

* Delicious meals and 'treats' show up at my door on a regular basis, which is a
wonderful thing since I probably would have lost ten additional pounds
without this kind of support!

* My doctor plants a flower bed while another friend tackles the gardens in the lower yard.

* There are frequent offers to run errands, and that's been so helpful, here and there.

* Fresh-picked flowers keep my bedroom fragrant.

* Loaned piles books and DVDs . . . and even a TV set for the bedroom provide me coping mechanisms for the long 'resting' hours.

* A dear room-mate from my college days comes every other evening to apply
comfrey ointment on my incision.

* There are so many calls and visits sprinkled throughout the day so that I NEVER feel lonely or depressed.

In fact, I feel totally LOVED and thoroughly PAMPERED!
My heart runneth over!

Childhood friend, caulking my shower stall.

Dr. Sue's flower garden, outside my dining room window.

Sisters Jayne & Barbara, whose photos represent all the
many, MANY dear friends
keeping me surrounded by lovewhile my body is healing.

And this post doesn't even TOUCH the many way
my FAMILY has helped me through this!
Another time!

Drug Withdrawal

2008-06-24T20:51:00.000-06:00

For me, drugs are a two-edged sword. With my medications, the pain whispers instead of screaming at me.

Be honest, Ginger. Sometimes it talks rather loudly. But there IS a measure of control with my pharmaceutical friends. And I'm very grateful for that.

On the other hand, I suffer from LOW APPETITE and I point the finger at my collection of pills. (Lucky thing I have kind KIND friends who have come to my rescue with tasty morsels, enticing me to eat.)

Over the last three days, I have cut my medication in half. Not because anyone said to do so. I just wanted to see how I'd get along with less meds. Well, this is how I managed . . .

I suffered. I used a month's supply of Klennex. (Sorry I forgot to pull out the camera and snap some shots of my very own crying bouts. But this image gets the point across.)

But, I'm over it and I'm taking HALF the meds as I was taking last week! Instead of Dilaudid (2 mg) and Ultram SIX times a day, it's THREE times. Instead of Zanaflex and Lyrica THREE times a day, I've tossed the Zanaflex and cut the Lyrica down to twice a day. No more setting the alarm clock and getting up to pop pills! Hurrah!

And, how about the pain?

I'm managing
... and I'm still hiking!

Bad Girl Confession

2008-06-21T17:20:00.000-06:00

What most of you don't know is this: I was a BAD GIRL when I first got home. After waving goodbye to my dear brother Richard who picked me up at Provo's little airport, I grabbed the car keys and my girlfriend MaryJoy and my dog Chica and I drove up to the Rock Canyon trailhead, just four blocks from home. I was in 7th Heaven as I hiked towards the mouth of the canyon with butterflies and dragonflies leading the way. Life seemed so perfect. And it was. Even if I wore myself out completely.

Because I am maturing, slowly but surely, I listened to my doctor on the following day when she said, "You can hike, but can't you drive . . . yet" So, I found a new hiking"buddy" every day who would take me to the trailhead until I got back my driving privileges. Still, it continues to require great endurance and I usually come home pooped.

This photo was taken on my 2nd day back from New York.

How grateful I am that the Relief Society (women's organization in the Mormon Church) have brought me SIX dinners since I've come home, because I probably would have chosen to use my minimal energy hiking instead of preparing proper meals. Fortunately, I don't eat a lot and I've judiciously consumed 1 Relief Society dinner for two or three days. Then, the next one arrives! (Well, yesterday I told my dear sisters in the R.S. that I'm ready to fly solo on the food front. Truly, I am.)

I've kept rather quiet about my hiking, because folks wouldn't understand what we scoliosis surgery survivors understand.

That is, we KNOW that there is only a very small daily quota of FUEL in our tanks and when it's gone, it's really gone. Having your skeletal systems rearranged and then pinned in place with metal screws and rods kinda takes it out of you. So, one must PRIORITIZE carefully.

I choose to hike, because it's GOOD for my body and my spirit and my dog. Each day, as I trek farther up the canyon, I feel stronger, healthier. That's just what I need!

I Got WHEELS!

2008-06-19T20:01:00.001-06:00

Right gal.
Right vehicle.
Wrong place.

Today was my first Maiden Voyage. Yep! I was cleared for driving.

It took some work to convince my doctor that I am truly able-bodied, in spite of my handicap sticker which gives me until Halloween to achieve that desirable status.

It also took relinquishing Xanaflex, a powerful medication which has the ability to send folks off to La La Land.

I tossed the drugs and it was,all and all, a GREAT trade-off.

Here are my limits:

5 Miles Distance, MAX.

No Night Driving

Hmmm, I can live with those, I told the doctor nonchalantly, while my heart was singing "YIPPEE YIPPEE YIPPEE!!!"

So where did I choose to go for my Maiden Voyage this afternoon? To the beauty parlor, naturally. (I know people don't call them beauty parlors in the 21st Century, but I was born in 1952 and find it endearing as well as age-identifying. Especially since I like my age.) So, it started as a little trimming of the bangs and ended as a full blown hair cut and style. I felt GLORIOUS! And I didn't look half bad either.

Did I run around town doing lots of little five-mile errands? No. I have matured into a moderate and cautious person who accepts her limits gracefully. (My doctor reads this blog.)

First Out-patient Physical Therapy VIsit

2008-06-17T12:09:00.000-06:00

I went to my first out-patient physical therapy session yesterday and I knocked the socks off the therapist, who was fully prepared to see me in a walker. After all, he's been dealing with these kind of cases for thirty years. Well, the truth is, I am SUPPOSE to be hunkered down over a walker, shuffling along. That's the way it usually goes. In my case, I've had such a large basket-full of loving support and my body responded by kicking into gear prematurely.

Mr. P.T. spent thirty minutes measuring all the bones and found that everything aligns nicely. That was a BIG DEAL to me. The next hour was spent doing a series of about twelve exercises. WIMPY exercises. Not at all like the stuff that my Cruella Deville Pilates teacher had me doing for the last two years. (Think of that evil character in 101 Dalmatians and you will understand the nature of the torture I endured.) I am HUMBLED by these wimpy exercises. But I understand.

You see, in my back, there are hundreds of bits of bone that my surgeon grafted from my old fusions (done in 1966) and from the three ribs he detached. He placed them between twelve of my discs. These bone morsels need to grow and attach themselves to my spinal discs so that they will never ever curve again.

CAREFUL is the name of the game for me now. It doesn't come naturally, let me tell you. But it's the way I need to lead my life until the all the smidgens of bone FUSE and become a part of my spine.

A LITTLE EDUCATION: For most people, it is good to have a spine that moves freely. Well, MY spine seems to have had a very extensive view of that freedom and moved way to the right and then way to the left. If you want a visual, here's what it looked like before surgery:

As you can see, this is NOT good. I needed a spine that stayed right in the center. Thus, twelve of my discs have been rearranged in a more conventional fashion (straight) and then fused.

So, I am learning a new style. I must hold myself back. I must do wimpy exercises. I must behave conservatively. FOR ONE ENTIRE YEAR. Yep. That's how long it takes for bones to fuse. My challenge will be to accept my limitations graciously.

None of this behavior for 300 more days . . .

2008-06-16T21:48:00.000-06:00

I have been debating on whether or not I would include this shot that Kelty took of my gorgeous scar.

Some of you may tell me that my scar looks "striking", but not exactly attractive. Well, I just think it's the Cat's Meow. We all travel through some truly amazing journeys along the way, but not all of us have such a STUNNING piece of body art by which to remember a one of life's truly magnificent adventures.

Besides, my distinctive outsides match my one-of-a-kind insides. Being unique is such a delight!

Of course, it's only THREE WEEKS since this 28 inch slice was created on my back and the "look" of it will change. By the time I'm cleared for swimming, it won't be this brilliant red color. One will have to take a second look to really see it at all. That's okay. If they want to see the "raw" version, I can send them to this blog.

2008-06-12T20:04:00.000-06:00

Here's where I hope to be next year. . . and I just might make it, considering all the love and encouragement which has blessed my life and sped up my recovery! I am deeply humbled and grateful for so many helping hands and kind hearts! (BTW, this was my pre-surgery Victory Dance, just before I left for New York City.)

Post Surgery Movement

2008-06-10T22:10:00.001-06:00

The video above shows where I am at today!

Home again!!!

2008-06-08T22:29:00.000-06:00

I've been home for forty-eight hours and New York City seems to be light years away! What an amazing experience to flown right home to Provo in a private jet, provided by my brother Ken. We rode way above the flight zone of the commercial jets, which meant we could look down at the thunderheads instead of flying through them. It was smooth sailing all the way without any security lines or other such nonsense.

I have received a mountain-full of blessing as I've gone through this initial phase of recovery. The private jet ride was right up there with the blessing of the world's best scoliosis surgeon and three kids who have been wonderful through this huge ordeal.

Some jet shots! Here's my sister Tricia (on the right) and myself, ready for take off . . .

Here's my brother Ken (who is a regular Jet Setter) and my daughter Kelty, who has been a fabulous caregiver during my entire NYC recovery.

Here I am, in front of our jet at the Provo Airport (Notice, it is now OUR jet!) As you can demise, it was quite windy when we arrived . . . Friday evening at 7:30 p.m. Let me just say, I was ELATED to be back on my home turf! So spacious and relatively quiet compared to Manhattan!

I feel myself recovering beautifully here. My god-daughter and her natal mom have been so attentive. They will be here until Tuesday and then Kelty and Duane will be moving in. The way I'm feeling, I am guessing I'll be managing independently before long!

2008-06-05T19:49:00.001-06:00

Kelty took this photo TODAY with my surgeon Dr. Ohenaba Boachie, one of the "World's Top Ten Miracle Doctors", according to the Discovery Channel. I'm cleared to go home, but must return to have my reconstructed spine evaluated by Dr Boachie at the following intervels:

Six weeks post-op (that's in just 28 days!)

3 months post-op

6 months post-op

Annual visits for the rest of my life!

So, I guess New York City and I are going to be friends forever and ever!

My Unique Body

2008-06-05T15:15:00.000-06:00

New Plans! We leave for Utah tomorrow (not Saturday) via private jet. On board: my brother Ken, my sister Tricia, my daughter Kelty and ME, along with a few pounds of titantium - my new lifetime companion.

Speaking of titanium, I wanted show off my new and relatively unique insides. I have eighteen 'pedicle' screws, approx. four inches long. They are attached to the bone of the spine. Then, there are two rods which run the length of my spine. They were shaped in the operating room in order to manipulate my spine out of it's curvature and into correct alignment. Since the rods are connected to the screws which are attached to the spine, the spine was forcibly moved into its new position. In other words, they cranked my spine with the help of the rods, changing my curvature from 65* to 24*. That must have taken amazing FORCE!

Three of my ribs were detached and repositioned into a more appropriate location, eliminating my rib hump. Bone grafts were taken from my 40 year old fusions and the ribs which were repositioned. As I move around, I can feel all those bits of bone making unearthly music. The doctor says I needn't worry about the crunching sounds, they will go away as the bone starts to fuse during the next few months.

Coming Home!

2008-06-04T13:17:00.001-06:00

Thanks to my Uncle Ken, Mom is not going to have to go through the commercial flight system, and will be returning home on a private jet on June 7th (Saturday). This will be much better in several ways: Mom can lie flat during the ride, we won't have to go through security, and there will probably be more room for mom's luggage. There will probably be other perks to the private flight, and it is undeniably a better way to get home.

As we are preparing for the flight home, we have met with several doctors. Mom met again with Dr. Boachie Monday, and then Tuesday morning she met with the director of the pain management department of the hospital. Today we went to see a retinal specialist! Mom was seeing flashing and shadows on her left eye, similar to her experience last fall when she had a retinal tear which required an emergency surgery. Although the specialist didn't recommend surgery right away, he suggested that she get into a retinal specialist after returning to Utah. I want to thank Cody for always being available for our medical questions. He was able talk to Mom this morning and provide some great suggestions.

Mom really is a trooper as she continues to manage her pain. The meds have finally stabilized to the point where she is not groggy most of the day, but she still has continuous high level of pain. She was prescribed Xanax last night for sleep, and was able to sleep 5 and a half hours! She has been averaging under two hours of sleep daily since the surgery.

There are so many people who have extended their love and support through this process, and I want to thank you all from the bottom of my heart. Mom is two inches taller. I think this surgery will change her life in many wonderful ways in addition to her height. Much of the real healing for Mom will begin after she arrives home, and I will do my best to post the ways that she could be helped during that time for family and friends in the area. Though she can't express it right now, I know that she has also been profoundly grateful for the family and friends who have stepped forward to lend their love, support and resourse's to make this surgery possible.

Thank you,

Kelty

Drugs are DANGEROUS

2008-06-03T16:35:00.000-06:00

It's Ginger here! I am gaining enough energy to write a blog and that's a great step in the right direction. Apparently, I missed quite a bit of the action over the last couple of weeks, due to my state of post-surgical confusion. I guess it's a common fall-out from major surgery. Being completely under anesthesia for nineteen hours didn't get me functioning well out of the starting gates. Then, in my drug-induced fog, I simply wanted OUT! (Or so they tell me.) I wanted to go, go, go. Dr. Boachie had to limit my walks around the perimeter of the ward to three times a day. (I was doing six, on my third day post-surgery.) I was the frantic goldfish is a tiny bowl.

You might think my energy was a good thing. Well, it wasn't. I seemed to forget that I had several accoutrements attached to my body and they had to go with me. I'd just hop out of bed whenever I felt like it and get as far as I could before they would stop me. I was nimble, but it simply wasn't safe, because I was out of my mind. Several nights, a private duty nurse had to be installed to keep my wings clipped and my IVs safely connected to my body.

Usually, my drug haze put me back to sleep within a few minutes of agitation or garble speech. My kids took some video footage of my verbal recaps of the bears, monkeys, and bugs that I'd be watching. But I'd say a few words and then snooze for 15 seconds and go back to speaking, although the topic had been changed. Apparently, I even found my cell phone and called my local doc, rambling on incomprehensively. More than once. One of my regular themes was to try and negotiate my way into more meds, because the pain was unbearable. Those White Coats would show up and I attempted to use every trick in the book to get them to agree to switching my drug list to something that would actually help the pain.

Truly, all this was VERY challenging for my children and sister. Since I don't remember any of my non-compliant behavior, they have (with promptings) filled in the gaps. I simply wasn't the mom and sister they knew. In fact, they had to protect me from myself constantly. Very exhausting. Now that they've shared a bit of the challenge with me, I feel so repentent and sorry for all the trouble I caused. Unintentionally, for certain.

On the eleven and last day of the hospital, I began to wake up. It took two more days for the fog to truly lift. Getting de-institutionalized really helps in these cases, according to my home doc and the pain management team at the Hospital for Special Surgeries. Today, Dr. Wagner, the head of the Pain Meds Dept. told me I wasn't bad at all and he deals with such cases every day.

Too bad my kids didn't have Dr. Wagner's perspective. For them, it was just HARD.

MORAL: Drugs are dangerous.

Monday Morning: Last Meeting with Dr. Boachi

2008-06-01T19:35:00.000-06:00

Hello Family and Friends,

Tomorrow morning is our last meeting with Dr. Boachi. He will look over mom's back again and re-assess how she is doing. Today she went on a walk all the way around the block. Duane also went back to Chicago today for his last week at Getco in Chicago (Go Duane!).

Overall, Mom's physical ability is above and beyond what we expected. Other than reaching up or down, and twisting, she can do most things on her own. The recovery will be focused on dealing with the pain, for the most part. We are looking forward to saying goodbye to NY soon and traveling home.

Thanks to Victoria Harris, my mom's goddaughter, Chica and the plants (and our hamster and goldfish) are being taken care of during this extended stay in NY. Thanks Vic!

Kelty

Video for Ginger's Family and Friends

2008-05-31T16:34:00.000-06:00

Ginger is finally out of the hospital after eleven days of post-operative care. Now, she is improving in strength at the Belaire Guest Facility which is physically connected to the Hospital for Special Surgeries. When I arrived here this weekend and saw her for the first time, I (Duane) was so happy to see how well she's doing now. Check out some of the video from this week (1 minute):

Thursday and Friday May 29th and 30th

2008-05-30T04:32:00.001-06:00

Hello,

There has been alot going on here, so I will some up some of the most important info. Yesterday (thursday) we had been told that Mom would be leaving the hospital. As it turned out, her meds were still not moderating the pain enough, so mom is still in the Hospital at this point. After a good talk with her close friend and brother, my Uncle Scott, mom felt very comforted even though she had bouts of pain throughout the evening. Through a detailed discussion with Moms wonderful Doctor, Sue Dyle (thank you so much Sue) it was confirmed that Mom is on an appropriate amount and type of medication for the pain, even though it is still overwhelming.

More soon,

Kelty

2008-05-28T09:58:00.000-06:00

Mom is awake! She was able to sleep for almost 4 hours last night. Maxine, our favorite Nurse from the private nursing services, was very helpful for mom all throughout the night, and they listened to music together. Mom has invited Maxine to come visit her in Utah, and Maxine seems excited about the idea.

This morning, Dr. Boachi (Mom's surgeon) and Dr. Wyneberg (Mom's pain specialist) came by again this morning. Mom is going to be released from the hospital thursday, and we are going to be staying at a two bedroom apartment at the "Bel-Air" (please excuse the non-french spelling). The Bel-Air is connected to the hospital, and it will be great for Aunt Tricia, Mom and I to all be in the suite, which will have two different rooms. This hotel also has the added benifit of being so close to the hospital that doctors can walk right over to the room if needed. It looks like a nice place to stay, and we are excited to move there tomarrow.

When awake, mom is very aware of things going on around her and is excited to get things done! She has "restless legs", but was told by Dr. Boachi to limit the jaunts around the hospital to about 3 a day. She is also scheduling "Franco" to come and do her hair, so hopefully she will then allow us to do more blog video's.

As far as pain management, Mom is off the drip of Morphine, and is still on Ultrum and Dyelauded. Though she does still mention that the pain is overwhelming, she seems to be able to manage it alot better. The nurses are on a very structured shedule where they are checking with mom every hour or so to ask about pain, and that has helped alot.

here are some things that Mom wanted me to mention, I will scribe it in her voice:

I have made a lifetime friend with Maxine, and she is excited to come out to Utah with her husband. She has been my evening nurse for the last three nights, and will be here again tonight. We like to play around and talk about stuff, and we have had a great time.

I feel like I have met so many great people.

I have 7 very large windows in my room which I love.

That is it from mom, she fell asleep :)

Last note: It looks like we will be returning home June 6th, not June 4th as we had origionally planned. We will post the time of arrival as soon as we know.

take care,

Kelty

Meeting with Dr. Boachi

2008-05-27T09:00:00.000-06:00

It's 11am Tuesday morning and we just met with Dr. Boachi. He reaffirmed that Mom needs to moderate her pain before leaving the hospital, and said that the likely discharge date will be Thursday (yay!). He also said that she will be fine to stay in the apartment for a week before taking a plane home to Utah, which works out well since we have already reserved an apartment at the Helmsley buildinlg.

The Hemsley building is where Arian, Leah, Duane, Aunt Tricia and I (Kelty) have all stayed while we have been in NY. The Helmsley is technically called the "Presbyterian Guest Facility at the Helmsley tower", but it is much easier to just say Helmsley :). It is located just around the block from the Hospital, so our commute has been a very quick walk. This is the building where mom's apartment is also located.

Mom is sleeping soundly, and we hope that she can catch up on the sleep she has missed every night since the surgery. She was cared for again by her favorite nurse last night from the private nurse services, and that same nurse will be returning tonight. She is still on liquids until her stomach goes down, but is going to the bathroom very often, which is a very good sign.

I read to her the emails that have been sent to: gingerinrecovery@gmail.com, and she has enjoyed them. Dr. Boachi is clearly a very caring and knowladgable Doctor, and it was great to meet with him this morning. Please email at mom's email account to let me know if there are any details that you would like to know about that I've missed. Have a great Tuesay!

More Awake!

2008-05-26T10:19:00.000-06:00

It's 1pm in the afternoon, and so far today mom has been more awake, and less confused. She still sleeps on and off, and is usually awake for only a minute, but she was able to talk with Uncle Ken for several minutes just now.

The pain specialist met with mom again this morning, and she is still on the Ultrum (for baseline pain relief) Dilauded (for when the pain spikes) and she is now back on the Morphine pump (for instant relief). I hope I spelled those right.

It looks like mom will be in the hospital several more days, but that will be confirmed when we talk to Dr. Boachi later this afternoon. She is now able to drink clear liquids, but no food. Before she can leave the hospital, she needs to have a functioning stomach, good vital signs, and medication that is keeping down the pain, but not making her groggy. Her stomach is doing much better, but digestion is still very slow.

Some of the things she likes to talk about when awake are: walks in the canyon, her kids, her siblings, Grandma, Adventure Time, and trips to Mexico. She also loves to sing her favorite musicals with me and I am always amazed at how much of the songs she remembers. She is definitely Grandma Florence's daughter :)

We are sending out love to you all! Congratulations Sarah Jane on your Marriage!! We were sad to miss it but were thinking about you on your special day. It sounds like everything went just as planned.

take care

Tricia's Coming Out to Join Us

2008-05-25T11:19:00.000-06:00

Hey Family and Friends,

It is now Sunday afternoon and Duane's flight is scheduled to leave tomarrow evening. My wonderful Aunt Tricia has volunteered to come out, and has scheduled a flight that will arrive tomorrow. Through the last couple of days we have found that mom's care requires two people. She is now able to go to the bathroom, but needs one person to move the IV's and the other to support her on the way. Usually she needs help every couple of minutes because she is so disoriented and often wants to get up without help, a good example of her independent spirit :). There are several other reasons why having an older sibling around will be very helpful, we are excited to see you Aunt Tricia!

Our goal of getting mom the pain relief she needs without being too groggy is still in progress. She has been taking off the "pain pump" again, and has two different pill medications that should be more than enough to manage her pain. Duane and I have been in close communication with the nutritionist, pain specialists, and nurses and they have all been caring and understanding.

Mom has been either asleep or very confused today, partially from the meds and partially because she was up all night. The night nurse was a very skilled mother of two who has been a nurse for 18 years, and she comforted mom as much as possible, while making sure she was safe and getting the right amount of meds. Mom is not allowed to eat or drink at all because her stomach is still very distended. She is, however, on a drip of hydrating liquids (as long as we can keep her IV in!) Mom was very smart before this surgery and put on an extra 20 pounds, so we are hoping that she will not loose too much weight overall.

more soon! Thank you all for your support and please continue to keep mom in your prayers.

Kelty

CT Scan

2008-05-24T21:40:00.001-06:00

Just wanted to give you all a quick update on the CT scan... the doctor came back this evening and it was pretty clear there is nothing serious to worry about in her digestive tract. It's a serious case of distension, but after today, I think things are going much better. Her tummy is softer today even though it's still quite a bit bigger than usual. Some of the bloat is due to her own body's response to the surgery while some is due to the medication (causing constipation etc.). Phew.

Kelty Here

2008-05-24T10:21:00.000-06:00

Thank you Duane for summing up the last couple of hours. I wanted to add some things. From the helpful and thorough explanations of Sue Dyle and Cody Young, I understand that the experiences that mom is having are, for the most part, a normal part of this process. The medicine does make her drowsy and feeling confused, but the goal is to get her the pain relief she needs without the drowsiness. Duane wrote that blog at 2 or 3 in the morning, and it had been a long day. It is now 12 noon on saturday, and mom is getting all the care that she needs. The orthopedic doctor wanted to make sure that there was not anything more serious that is causing the pain in her stomach, so they took an X-ray. Stomach distention is a very common and much disliked side effect of the narcotics, and since mom has been on some, that has caused some of the problems with her stomach.

Over the past 24 hours, mom has met with 4 or more pain specialists, even though she cannot remember the meetings at this point. What a blessing it has been, however, to have a "private duty" nurse the last 2 nights. At any given time, the normal duty nurses have 6 to 10 patients to care for, alot of responsibility! The private duty nurse can stay in the room with mom, and give her the medicine and care right when she needs it. It was great to have peace of mind during the wee hours or the morning when Duane and I went to sleep.

I will post the results of the Cat Scan asap, but I have been assured by the Doctor that it is more likely just constipation. Mom is now on 2 forms of pill medication when she needs it, and also a very low dose of morphine that she can push a button for right when she feels the pain. The first 3 days are the hardest, it will only get better from here!

Thank you to all family and friends for your love and concern, we can feel it all the way here in New York. Thank you to my wonderful husband and best friend Duane for standing by Mom's bedside and comforting her throughout this whole process, I love you! More updates soon,

Kelty

Thanks for your words of encouragement

2008-05-24T08:59:00.000-06:00

Thanks to all of you with comments of support and encouragement. We read them each to Ginger when she's in her alert state. Most recently, she loved hearing from you guys, Rozan and Sue and Sonny. You're awesome!

Another Tough Day

2008-05-23T19:32:00.000-06:00

Duane here again. Ginger was taken off self-administered morphine this afternoon around 2:30 yesterday (Friday) and the pain got pretty bad. Kelty and Leah were by her side as she pleaded for help and relief, but there was not much they could do without approval from the RN (registered nurse) in charge of her case. Finally, after a couple of agonizing hours, around 4:30 in the afternoon, she was authorized to have a powerful narcotic given intravenously (I think it was Dilaudid) and that sedated her for several hours.

She did the "passing in and out of consciousness" thing for the duration until gaining full consciousness around 8:00 PM. The pain became very intense again, and we struggled to explain that we and the doctors and nurses were doing everything that could be done for the moment.

The problem was that Ginger's stomache had become very distended (bloated) and it was starting to cause more pain than her back! The abdomen was so stretched that it sounded like a drum when we or she taped it. It's a bit of a catch-22 situation because the narcotics she is taking often cause distension, but the distension is so intolerable that she needs narcotics. At one point, she threatened to leave the hospital and get her own medicine, even if she had to walk across the street in her skimpy hospital gown!

An orthopedic specialist and a radiologist came to investigate the cause of the distension. Finally, after some scans and a long nervous wait, we were able to determine with some amount of confidence that it was stool blockage and not necessarily anything more life-threatening. The doctors were very reassuring, and told Ginger that she wasn't going to die, which calmed her greatly, even though it didn't change the level of pain she was experiencing. Lastly, they ordered an enema and approved another shot of Dilaudid.

At 1:00 AM, as I waited outside her room, enema finished, and now returning to her bed, I overheard Ginger say, "I can't believe I would do this again!"

At 1:30 AM she was at last able to pass gas. I had never thought of passing gas as a privilege before.

Before leaving for our hotel room, I asked Ginger how she was feeling at 2:00 in the morning. She summed it up, "Gross, but not suicidal."

Photo & Video

2008-05-23T10:57:00.001-06:00

The photo is from before the surgery, and there's also a short video of Ginger's room.

I (Duane) will be posting more photos and video here, on my flickr account.

Duane Here

2008-05-23T09:56:00.000-06:00

I've just had the honor of being with Ginger for a few hours this morning. She has been quite coherent at times, but the coherence is primarily due to the fact that the morphine has worn off... so a button press later she is back to fading in and out of consciousness. The pain without morphine is still intolerable, but she's a trooper and has smiled through the bulk of it.

There are so many bright sides to this experience, especially when considering the remarkable physical trauma her body has gone through and how well she is doing just 2.5 days after surgery. You can tell Ginger is a kind and warm-hearted person right down to the core. She will hear a knock on the door (even if it's a neighbor's door and not her own) and politely tell whoever it is to come in, even though she doesn't know who it is and is barely conscious.

At other times, it brings me a smile or two to hear her semi-conscious mutterings. It's like a window into her dream world as she sleeps. I'll hear her say things like, "I've forgotten this fellow's name... (a few seconds later) and he's not here anyway (as she opens her eyes)." It's possible to have short conversations, but they usually last fewer than 30 seconds.

More later...

Friday Morning

2008-05-23T09:24:00.001-06:00

Duane arrived last night and was able to see Mom for a few minutes before visitor hours were over. I had to get a special pass from security to stay into the morning. This morning Duane acquired a visitor pass at 7am and was the first to arrive, then I joined him at 9am when visitor hours began.

She seems to be in less pain today. The P.T. assistant came this morning and Mom walked all the way out into the hall and then back to her bed! She was able to sit up all by herself in bed before standing and this was a happy first! After getting back into bed she was ready for another dose of pain medication. The nurse has added a nerve pain medication to Mom's existing pain medications. Mom wanted me to post that she is in room #642.

I will be flying back home tonight at 7:30pm. I am SO thankful that I have been able to be here up to this point and wish that I could stay longer, but alas my children need me and Cody has to work for the next 3 days straight. I am very grateful that Duane and Kelty will be here with Mom.

One of the reasons I have been more detailed on these last few posts is because I really want my Mom to be able to read about what has been happening. I'm not sure that she will remember much of these last few days at all, or even that I was here by her side as much as I could possibly be. When you are able to read this Mom please know that you were truly incredible each day I was here. You were kind and sweet to each person who attended to you and displayed so much courage. I will continue to check in several times a day with Kelty and Duane to find out how you are doing. I love you so much!

Love,
Leah

A Rough Night with a Great Walking Moment

2008-05-22T22:29:00.000-06:00

It's 1:30am and I wanted to post one more time tonight. Mom has been experiencing much more pain this afternoon and evening. We have meet with the pain specialist twice. The first time we discovered that she was "over medicated," so we were advised to help her cut back on the morphine drip. Several hours later her pain became much more severe and she was re-evaluated by the specialist again. Her morphine drip dosage was reduced and she has been given the ok to push it up to 6 times an hour. She is also taking Perkiset (I have no clue how to spell it) and her dose was increased to 2 pills every 3 hours instead of 1 pill every 4 hours. The pain medication does make her really quite groggy and confused, but even in that state she continues to say that the pain is to much to handle.

However just as I finished writing the last paragraph Mom had a strong urge to stand up and walk. She was totally amazing! First she walked in place griping the walker and lifted one foot at a time. As soon as the nurse and I were able to get the iv's in our hands she was ready to walk forward several steps and then she even turned around to walk back to her bed. Oh this was exciting! Mom said "Even though it kills I feel great being able to walk because I know that this is what will help me heal faster and better." She is now settled back into bed and going in and out of sleep. I wish for her that she were able to stay asleep for longer than just a few minutes at a time.

I am SO SO glad that we have a private nurse here in the room with Mom during the night. I certainly could not provide the level of care that she has needed tonight on my own. I think I may even venture back to the hotel room for a few hours of sleep before we start our day tomorrow.

Thanks to all those who have left comments for Mom. When she is alert enough I know that reading them to her will bring her so much comfort and joy.

Love,
Leah

Mom is finally in her own room!

2008-05-22T11:03:00.000-06:00

Today started out much like yesterday. I (Leah) spent the first visit with her starting at 9am. After a little kind persuasion I was able to stay by her side for a grand total of 45 minutes. During the visit I was told that she would be moving into her room very soon... I have come to learn that in hospital language "soon" means anytime within the next 4 hours. At 9:45am I went back into the "Family Atrium" to wait until the next visit or until she was moved into her room. During our visit Mom seemed to drift in and out of consciousness more than before. She said several things that did not make much sense as she would come to and then quickly fall back asleep.

At 11:45am Kelty and I were right by her side along with two nurses as she was transferred to her private hospital room. It has lots of windows which she was happy about, but even as we moved from recovery to her new room she drifted in and out of sleep.
Soon a physical therapist named Sara came in and was time for Mom to attempt her first steps! She wanted to make sure that Kelty captured this event on camera to add it to her recovery video that Duane is going to be making for the benefit of others who are investigating undergoing the same surgery.

She was very strong through the pain and took about 6 small, slow steps forward with the assistance of the P.T. and a walker. Then she took 6 steps backwards. She wanted to try again a second time and took about 4 steps forward and then back. By the time she got back to sitting on her bed she was in quite a bit of pain. We had the nurse administer more oral pain medication along with the morphine drip that she is receiving medicine from continually.

I am typing from the side of her bed right now as she is trying to rest. She has been talking and even singing a tune or two as she drifts in and out of sleep. Sometimes she wakes up and seems confused about where she is. I remind her that we are in New York. She has asked to see various family members and friends, but then I remind her that again that we are not in Utah right now. Even though at this moment she is barely consciousness and confused she has really wanted to call her brothers Scott and Ken. Neither one answered but she did her very best to leave a good voice message for each of them and then quickly drifted back into sleep.

My plan is to stay by the side of her bed tonight along with her private nurse to make sure that she knows I am here for her even if only to provide brief moments of comfort to her in those spontaneous moments of awake time.

Kelty is back from her lunch break and my pregnant belly is dreaming of food and now it's my turn to take a quick lunch.

Love,
Leah

Wednesday's Recap

2008-05-21T15:18:00.000-06:00

9:00am - This was the first time that we were allowed to visit with Mom today. Shortly before we went in Mom was woken up for the first time and her breathing tube was removed. We were very pleasantly surprised to find her with a big smile and lots to say. Unfortunately we are still only permitted to go in to her bed side one at a time, but when I (Leah) was by her side I felt so comforted to hear her coherent words of contentedness. We were able to reassure her that the surgery went terrifically and that her spine looked quite straight in the x-rays.

11:30am- After waiting in the "Family Atrium" since the first visit we were so excited to be able to see Mom again. We suited up in our sterile yellow gowns and went to Mom's side one at a time. As I stroked her head she mentioned that it felt really good, so I kept that up for the 5 minutes I was able to be with her. She said that she felt a lot of pain in her back, but no pain in other areas of her body (this is actually a really good thing and I will explain why later in this post). As Kelty, Arian and I shared with each other our conversations with Mom the overwhelming feeling from her has been that she is very happy that she was able to have this surgery and also that all the medical staff have been wonderful.

During this visit I tried to acquire details from the nurse about when she would be transferred to her room and was told it would be later today. In the following visit we were told that she would actually not be able to leave the recovery unit tonight because they still wanted to monitor her closely, however, she would be moved to the "step down recovery unit." We were able to tour this area and the environment is much more peaceful and quiet. Although we really wish we were able to spend more time with Mom, we know that she is receiving top notch medical care.

1:30pm- Mom was so happy to see each of us again. She said to me "I keep asking the nurses when I can see my kids again and even if they say it is going to be another 15 minutes it seems like forever." When Kelty was by her side she requested her i-pod so that she could listen to music and she also wanted to use her mouth guard which helps her mouth stay closed when she is sleeping. It was a bit of a fiasco trying to get those items in to her and we ended up in a little meeting with the very kind charge nurse named Bambi who was able to help us get those things to Mom.

2:45pm- Earlier in the day we had requested to talk to another doctor (Dr. B is out of town until Sunday) about a few more specifics of the surgery. We were happy to learn that Dr. Kim was in Mom's surgery and would be in to talk to us soon. He was very kind and took time to answer all of our questions. Again we were so happy to hear that things were looking better then we had hoped for. Here is some of the information Dr. Kim shared with us:

1. None of Mom's rib bones were needed to successfully complete the procedure. This is great news because she was nervous about dealing with the additional pain if portions of her ribs needed to be used.
2. After about 1 year Mom should have a "normal" range of motion in her spine above and below where the rods are secured. We should never be concerned about the titanium rods breaking, the will not.
3. Although a full recovery could take up to one year, Mom should be able to "preform activities of daily living" after a few months. We are SO VERY VERY THANKFUL to Kelty and Duane for willingly moving into Mom's house for the next 3 months to care for her day and night.
4. In the x-rays we viewed last night her spine looked very straight, but Dr. B predicts that she still has about a 20% curve. However, until they are able to take an x-ray while she is standing up we will not have a completely accurate analysis about the amount of curvature. The exciting news that Dr. Kim explained about this remaining curve is that with appropriate daily exercise (which we know Mom has no problem doing) it is possible for her to lessen the curve even further.

3:30pm- Since this was the last time Arian would be able to see Mom he spent the visit with her. For the first time he was allowed to be by her side for 30 minutes, yippee! She had been moved to the "step down" recovery unit by this time, hoary! Here is what he said about the visit : "She was asleep with her i-pod on when I got in, but she did not have the mouth guard in and so I found it, washed it and put it right into her hand. She soon woke up and was happy to see me. I told her that none of her rib bone was needed in the surgery and this news made her very happy. She told me that she felt so well taken care of, everyone had been so kind to her and that she was happy and thankful to be here." When Arian came back to Kelty and I it was apparent that he was sad to say good-bye to Mom. We were all so glad that Arian was able to get away from his hectic life and be here during this important time.

Kelty and I are waiting to see Mom again during the 6:00pm visit and then again at the 8:00pm visit. I'm sure that all will go well and we hope she will be able to get a good night sleep tonight.

Love,
Leah & Kelty

Recap from the Kids

2008-05-21T08:57:00.000-06:00

Family and Friends,

Thank you so much for all the loving support and prayers, the positive energy has been felt throughout this process. Thank you to Dion for updating the blog, Leah, Kelty, and I wanted to give a quick sibling update. Here is a review of yesterday with some more details.

12:00 P.M. : After braving the NY traffic on a commute into the city from New Rochelle we arrived at the hospital right on time. From the moment we sat down at the check in station people were warm and friendly. Mom started signing paper work and got her plastic medical bracelet. We then walked to the "waiting" room where we ran into Dr. Boachie. We did no waiting and were shown directly to a surgery prep room by the doctor.

1:00-2:00: There were many prods and checks to prepare mom for the surgery. Dr. Boachie came back in and drew lines where the incision would be. He visited with us briefly and was very warm and calming. All of the hospital staff seemed to acknowledge that Dr. B was a well respected surgeon. There were many "oh, you are with Dr. Boachie, that is good" comments from nurses preparing mom for the surgery.We also met with the anesthesiologist Kate. She was very kind and professional. She immediately noticed that mom has a small throat. She was concerned that it was going to be challenging to get the breathing tube in. Because of this she mentioned that once they got the tube in they would keep it in for the remainder of the night. This was because of mom's history with sleep apnea.

Between the time that the nurses and doctors were doing their final checks before the surgery mom was very bright and positive. She was happy and was full of thoughtful and kind things to say.At one point, around 1:30 she paused and said that she could feel the prayers and support in her behalf. She really seemed to be buoyed up by the love and support she felt.

Mom was also full of thoughtful advice and tender words of love. I think that because mom lost her dad at a young age she has been particularly sensitive to the fact that death can come even when unexpected. For this reason perhaps, she has prepared well incase the worst scenario occurred. I think she was in this mode of thought in her conversations prior to the surgery.

2:00 p.m.: They hooked up mom to an IV and Kate then gave her a sedative. They then started to wheel her out and the drug quickly started working. As mom was fading she asked that we all be contributors on a daily basis and that we work to be "givers." She said "I love you" many times and asked us to "be kind to the earth." Then she was whisked away.

3:40 p.m.: The attendant in the family waiting room informed us that the surgery had just started. We found out later that the small delay was due to the fact that there were some complications in getting the breathing tube in.

8:20 p.m.: After what felt like a long wait, Dr. Boachie came into the family waiting room and let us know the surgery had gone well. He showed us photos on his digital camera of some x-rays of mom's spine. We saw it from the back and side views. It looked incredible. The curve was almost totally gone. It looked straight. I bet mom has gained a few inches. He seemed very positive and optimistic, but he also looked tired.

The Anesthesiologist came in to the room and Dr. B departed. She shared that mom would be in the recovery unit all night and would remain sedated. This was because the breathing tube would be kept in. Kate also confirmed that mom's surgery went well and that all the indicators were positive.

8:30 p.m.: Dressed in sterile smocks we were permitted to enter the recovery unit one at a time for about 5 minutes each. Mom was hooked up on various machines and was asleep/sedated due to the breathing tube. Arian brought in the special shawl that mom had requested and each said a few words of "positive affirmation" per mom's request.

The last thing we were told was that Mom would have the tube taken out around 8:30am the following morning and the first time we would be able to see her would be soon after that time.

Again, we are so grateful for all the helping hands and faith filled support. Mom is so fortunate to have people who care deeply about her. It was a blessing to be able to have the surgery here and especially under the hands of an accomplished and kind surgeon like Dr. Boachie. We feel truly blessed and appreciative that mom will be able to enjoy a better quality of life and added longevity because of this event. We have much to be grateful for.

Love,

Arian, Leah, and Kelty

All Went Well

2008-05-20T18:32:00.000-06:00

A short while ago, Dr. Boachie came to tell Arian, Kelty and Leah that Ginger's surgery went very well, and she came through it just fine. The doctor commented that her back is now dramatically different than before, and she will probably be under anesthetic until tomorrow. (reported by Dion - another member of Ginger's Fan Club)

Right On Time

2008-05-20T12:49:00.000-06:00

It's Tuesday, May 20th, and everything is moving forward like clockwork for Ginger in NYC. The surgery should last approximately four or more hours, and then she will be recovering in ICU. She's in great shape for this procedure, having superbly passed all exams and tests since arriving in NYC last week.

Before surgery this morning, Ginger's doctor dropped by, gave her big hugs, and met Ariane, Leah and Kelty, who are impressed with his warmth and kindness. (Nurses and others at the hospital say this surgeon is The Best. ) As she was wheeled away to pre-op, she was looking at her kids, and they'll be the first thing she'll see when she regains consciousness. They'll be waiting for her and spending the night in the surgery waitingroom. (More to follow post-op.)

2008-05-19T19:05:00.000-06:00

This is my unquestionably final post!

All three of my children are here in New York. How blessed I am! Arian, my son, will stay for a couple of days. Leah, my eldest daughter, will return home to her babes after four days. Kelty, my youngest daughter, will stay by my side throughout my recovery. She and her husband plan to move into my home until I'm an independent woman once more. Isn't that the best?!

This afternoon, the four of us took a grand tour of Burke's Rehab, where I anticipated going after my week at the hospital. Well, it seems that they only want me if I can do a full schedule of physical therapy. However, I will not be able to do P.T. for a few months. Walking will be my only "rehab" according to Dr. Boachie. In other words, I'm not really a candidate for a rehabilitation facility. In fact, they told me they would probably release me under the circumstances. I'm glad we really got the scoop so we could redirect our course!

The NEW plan is to stay at the guest facility right next to the hospital until I am cleared to fly home. With Kelty's help, that is! My doctor says that his patients recover best in their own homes (with assistance) and his goal is to get me there as soon as possible.

How do I feel, just hours before this major spinal reconstruction?

FABULOUS! And, GRATEFUL!

I thank you all for caring enough to follow my recovery. This blog is for YOU and perhaps it will also be a way to share my experience with other people who are struggling with scoliosis and considering surgery.

It's been phenomenal to get all the little messages of encouragement posted on the blog. What would I do without wonderfully caring people in my life?!

Kelty will pick up messages here or at gingerinrecovery@yahoo.com.

Now, I'm off to bed and then, tomorrow at 1 p.m. EST, I'll be on the table, getting my IMPROVED SPINE!

Please, please, please send me your loving hearts so I can gather strength from you.
Ginger

2008-05-18T11:38:00.000-06:00

Ginger here. Such odd sensations at this juncture. Sometimes I feel like I'm walking towards a moving train. At other times, I remember that I am choosing a healthier life with a supported spine which will carry me through many more years of living, loving, and laughing. Truly, that's my choice.

For those of you who haven't seen an x-ray of my spine, you simply wouldn't understand why I would volunteer for this invasive procedure when I'm getting around adequately, albeit assisted by Ultraset, my drug of choice. Well, curvature of the spine (scoliosis) is progressive. My curves get curvier on a monthly basis. Some of my discs are slipping off of the discs below them. So, I'm taking the surgical risk to prevent the probabilities of more pain, more complications, less freedom of motion. This surgery is a choice. I am fully choosing it. I still have a great deal of active living to do. Therefore, I will surrender myself to this Major Procedure.

I would appreciate all of your prayers and positive energy on Tuesday. Especially at noon Eastern Standard Time and 10 a.m. Mountain Standard Time. Although the procedure is not due to start until 1 p.m. (EST), your loving support will help me to feel peaceful as I am prepped for surgery. If everything goes perfectly, the surgery will last around five hours. Dr. Boachie has decided to avoid the risks of undoing my existing eight fusions, although my new titanium rods will extend into this area of the spine. This means that he will only enter from the posterior side and not the anterior side. Happily, the surgery will be five hours instead of a full day or two.

I am feeling extraordinarily grateful for all of your support. I've been touched by many unexpected kindnesses as I've prepared for this Big Event. It's very challenging for me to need help. Too many years of being on my own. At this point, I am definitely grateful for every ounce of support. I'm going to be rather dependent for a while. So foreign. I anticipate that it will teach me new things, if I don't resist the lessons. Time for some humility.

My mom was humble and gracious until the very end of her life, even though it was really tough for her to lose her independence. I'm hoping some of her humility and graciousness will "rub off" on me. Maybe genetics can help a bit.

Getting Prepped for Surgery!

2008-05-15T20:49:00.000-06:00

Surprise! I'm back, typing on a borrowed mini-laptop. Sheesh, I keep making errors and then correcting them, followed by another round of boo-boos. My fingers know just where to strike the keys, PROVIDED that the keys would show some good manners and relocate themselves to where they ought to reside. Humph!

From dawn til dusk, The Hospital for Special Surgury entertained me with various novel types of examinations on an hourly basis. I came back to my dear little room outside the city (in New Rochelle) and I'm quite wiped out. Lots of poking, more blood tests, EKGs, pulmonary studies, and the good thing is this , I SILL HAVE A GREEN LIGHT FOR SURGERY ON TUESDAY

Love, the gal who was't going to write again. (Ginger )

P.S. Tonight I looked at photos of each of those I love and they were SO SO SO inspiring! So many of you are in my photo collection and I find myself smiling as I see your faces. You have touched my life unquestionably.

Ginger's NYC address

2008-05-13T14:24:00.000-06:00

This is where Ginger (left, at age 21) will be staying in New York City:

Hospital for Special Surgery

535 East 70th Street
New York, NY 10021

As she said only moments ago, she's ready to climb the mountain!

Dear People I Love

2008-05-11T14:58:00.000-06:00

Dear People I Love,

I may have seemed like a very normal person to you, but my insides aren't normal at all! I developed severe scoliosis or curvature of the spine when I was thirteen and several discs were fused at age fourteen. I lived in a plaster body cast for a year, since it was the Dark Ages of fusions and there was no instrumentation to hold my spine in place. I can truly say that my recovery was a highlight of my childhood, because I learned more than I possibly could have if I’d been a well-bodied kid.

In five days, I will leave for New York City in order to have a full-blown reconstruction of my spine at the Hospital for Special Surgeries. My original eight fusions will undergo 'revision'. Then, most of my thoracic and lumbar spine will be repositioned and held in place with two titanium rods, about twenty four pedestals (to hold the rods in place) and some crossbars. Included in this procedure will be the sacrifice of some of my ribs which will be used as bone graft material. The ribs will be ground up and the bits of bone will be placed in the spinal region. Dr. Oheneba Boachie, a tribal prince from Ghana, is my surgeon. He is world renowned and his 'miracle' spinal reconstructions have been highlighted on the Discovery Channel and Good Morning America.

I am a bit weepy as the day draws close, but I am not afraid. In fact, I want to create a YouTube video of my recovery so that other 'mature' adults will consider the surgery route if their scoliosis is progressing and making life difficult. Of course, that means I will need to recover in a way that is graceful enough to be inspiring. Good thing I'm not really vain, because I am fairly certain I am going to look like a truck ran over me!

Anyhow, this will probably be the only post written by Yours Truly. From now on, my children and my friend Dion will be providing the updates. If you want to connect with me, it would be best for you to write an email. In fact, I'd love to hear from you. The email address that my kids will be checking is gingerinrecovery@yahoo.com

I probably won't have the energy or coherency to speak on the phone and it's not because I don't love you. As I understand, the morphine is likely to scramble my brain. It may be as long as two months before telephone conversations will be possible. If a phone call needs to be made, you can contact my daughter Kelty at: 801-372-3540. (This is Ginger's cell phone.) If she is not avaliable, leave a message.