Thursday, June 24, 2010

Recovery

It will take several months.

But when I first got home, the doctor's orders were: "Three squares a day, 8 hours a night, and lay down three times a day for an hour each." Outside of the naps, sounded like my life. I was not to lift over 5 lbs., and no yoga.

I was on the same pain pill as in the hospital--something heavy with a high street value; I forget now which one. But it kept the headaches manageable, just not me. I was a noodle. Brian stayed home with me the first week and a half before having to go back to work (we LOVE being self-employed). He would keep reminding me about the 5 lbs. rule...that's hard. It's just a sack of flour.

I was no good at the nap part. At best, I would lay down once a day for an hour. I was no good at judging 5 lbs. either.

But I read a great book, for those of us who grew up in the 70’s! Ordered the large print edition, just in case my eyesight was not very good after surgery. Carol Burnett has a new memoir all about the show called, This Time Together. If you are a Carol Burnett fan, I recommend it! It’s a very fast read and didn’t last the whole recovery, but fun! In fact, my friend's mom (who has known me for 38 years) came for a visit with a present…that book. The hilarious thing is, I had just put my name in my copy to share with her! So there we sat trying to give each other the same book and confessed to having read it already!

And so it went. The naps faded away after a couple weeks. And the pain medicine was a disaster. I won’t share so much of the indelicacies. Suffice to say, it wrecks your digestive system entirely! Remember how Elvis (who was addicted to pain meds) died? My advice: stay away from them...let Advil take care of it...YUCK!

One interesting thing happened around three weeks. My glasses no longer helped my eyesight. Evidently the sight had improved and the glasses were made when the tumor was big. So no match any more. But I have to wait for several more months before getting new glasses…if I still need them!

I went back to work – FINALLY – after about 4 weeks. And was cleared for driving, mild exercise and slowly getting back to the things that life affords. I tried yoga with an instant headache as the result. I’ll be a good patient and wait until the end of July, as ordered.

Sarah

Wednesday, June 16, 2010

ICU

Neuro-ICU or 3-NS was a special spot where all of us had the same basic thing. Varying degrees certainly, but the same basic thing...brain surgery.

The first nurse, whom I don't remember much, was not very nice. I asked for something for pain. Her reply, as best as I can quote was, "No, you know you DID just have brain surgery." Exactly, doesn't that give you a little consideration in the pantheon of all things surgical? Sheesh!

But the remainder of the staff was truly wonderful! Excluding one small thing...neuro checks.

Neuro checks were performed hourly the first 24 hours. They consisted of the nurse's prerogative of squeezing hands, pushing and pulling of feet, shining lights in my eyes and answering basic questions like, "Who's the president? What year is it?" Seriously? Dude, I'm really tired right now. And there's a considerable amount of pain. Can I have some morphine, PLEASE?

"Nope. Not for neuro patients :) We need you lucid to perform the neuro checks :)" ....*sigh*...

And so it went the first day. But before it was over, Brian and I were holding hands. He, next to my bed, and I all bandaged, packed and needles in every spot. It was 4:20am. In the ICU, you have a private room, but no privacy. There is a large window looking onto the nurses' station. There was a nurse there writing in a large binder. I noted to Brian, "Hey, that nurse is left-handed."

"And she only has ONE FACE!!!" I cried as I repeated and repeated, "ONE FACE ONE FACE." The first of the miracles had arrived! I was no longer seeing double, but single vision once again!! I cried and heaved...ONE FACE! Thank you, God! Thank you for all the answered prayers! For I knew that if this was permanent, my life could go on as I had known it before. WOW! Less than 24 hours after surgery and I was seeing in single vision!

The nurse arrived quickly, perhaps alarmed by my monitors going nuts. Andy said, "Settle down now. Are you OK?" I repeated, "YES, of course!" And Brian proceeded to explain what had just happened. As a nurse, I think he was conflicted. He was thrilled at my quick response to surgery...on the other hand, he had just spent 8 hours regulating my pain medication and my heaving crying fit had blown it completely. I had a splitting headache!

More pain meds for me!

The next day, I was feeling better and the neuro checks were every 2 hours.

The third day, they expected me to go the the regular floor, but once again there was no room in the inn. So they kept me in ICU, but unhooked from all my monitors. Neuro checks were now every 4 hours and the nurse gave clearance for Brian to take me for a walk (with a wheelchair, just in case).

We walked all over and he took me outside to the front entrance. It was an extremely humid night. I love those...wonderful for breathing. He wheeled me back and forth for probably a half-hour. Life seemed brand new somehow. It was a lovely moment I'll never forget. Wheeling and talking...all new.

The next day was Day 4 and I was to be released that morning! Wow! Just 3 days in ICU and going home. It was remarkable. That morning, Dr. Nelson came in. I saw him across the ICU, checking charts and signing papers. Then he looked my way and made a B-line! He entered my room all smiles and hugged me! He said, "How many of me do you see?" I replied, "Only ONE!" He smiled bigger and shook Brian's hand. It seemed this was a wonderful result, even for him. If this wasn't typical, I didn't know and no matter--I was happy!

Sarah

Tuesday, June 15, 2010

The Big Day

Relieved doesn't begin to describe it! Dr. Nelson said, "you will be asleep the whole time." Really? The only thing I knew about brain surgery is the patient is awake--seeing it all, hearing it all, smelling...all while answering questions. Ugh. But for trans-sphenoidal surgery, you're OUT! Hallelujah.

I was to arrive at 5:30am for a 7:30am surgery. Two hours of prep, sort of.

Of course nothing to eat or drink after midnight, so the night before we went to our current favorite restaurant, Saffron Cafe. It's a lovely little Moroccan spot downtown. We had a geriatric-hour dinner at 4:30 so we could get to bed by 8:00. Oh and a free baklava for mentioning, "hey this is where I came for my 'last meal'."

In comfy clothes and freshly showered, Brian and I walked out of the parking garage and met mom at the hospital. Registration and then downstairs to surgery. They gave me all the usual stuff, except for what I asked for. All I wanted was a little something to check my nerves. I had never been put under before, never even been in the hospital before. "Nope, not for neuro patients."

In fact, I walked into the operating room with a surgical nurse! Completely lucid and not hooked up to anything. Maybe that's the way they do it, but I was surprised. The nurse introduced me to a room full of people. They clapped. I curtsied. They lay me down on the table. The anesthesiologist and resident I had met before were there. The resident started to work on an IV in my right hand as the anesthesiologist gave me a mask. He said, "just some oxygen for you." Lights out! I suspect he was lying :)

The next day in ICU my sister, Christine, who owns two salons, came to visit me. She brought me some waterless shampoo and lovely face washing stuff. She was going through my hair and said, "what is THIS?" Thinking she was referring to a lump I've always had in that spot, she said "How could I have missed that?" She has been shampooing and cutting my hair for over 20 years. She starts feeling around and there are three more just like it...in a pattern. They were scabs.

Evidently, there was much more prep to my surgery than I knew about. My head had been clamped down in a halo, tight enough to draw blood. Makes sense. Wouldn't want me moving around.

__________________________

This is where I link to a video of what a trans-sphenoidal surgery looks like. It's clean, not too gooey. And fascinating! The tumor comes our of your nose. The only stitches are inside the nose itself! It's a short YouTube video, if you care to look:
http://www.youtube.com/watch?v=jyOeLl4adSA
_________________________


It took about 3 hours total. I remember waking up in recovery, hearing a nurse ask, "No bed for Adams yet?" "No." So I went back to sleep. I do remember being wheeled to the Neuro-ICU and hoisted onto the bed. Then out again...but not for long...

Sarah

Monday, June 14, 2010

Disocovery

November of 2008, Dr. Rob Diegel of Urban Optiks in Broad Ripple. He's the best I've been to in 30 years...the ONLY one to ever see it and say it.

I've been wearing glasses since 1981. Back then, I just was having trouble keeping up with my reading. I complained of seeing a "negative shadow" on everything (for those of us old enough to remember rabbit ears on tv sets, it was like bad tv reception). If an object was light in color, there was an equally dark shadow around it and vise versa. Unfortunately for me, I also had an astigmatism in my right eye. If not for that, maybe someone would have suspected a tumor which must have been growing even then.

So I limped along, eventually getting used to what I was seeing, but still not enjoying reading like I wanted to. The dark type on a light page was difficult to see clearly even with glasses.

And then I found Dr. Rob. My eyesight had gotten much worse and I was wearing 9 year-old glasses. Time for a check up! I had not bothered to cover one eye and try to see out of the other, but during the exam, we discovered I had lost all of my peripheral vision! My eye appointment was 3 1/2 hours long. He was either looking for something, or had found it but didn't say. I got my glasses and went back for a follow up because they still weren't helping me. That's when he knew. He said, "Sarah, there is nothing wrong with your eyes, except for your mild astigmatism and presbyopia. You have a brain tumor." WHAT? No way. Thank you, bye-bye.

Well, I came home and told Brian, and I cried. In fact, that was one of the only times for tears in this whole ordeal. Much later after the MRI, Brian and I both had an emotional breakdown. I was crying mad--angry for my lack of emotional strength. Brian I think, was frightened.

Then I sat on it for a year and a half. I have my reasons.

Eventually, what I could see in the middle went to double. Driving was difficult, but I still did it. Framing was difficult, but still did it. Lying, or omitting certain truths (to everyone, but Brian and Dr. Bob Killingbeck) was difficult, but I still did it. Still had my reasons.

Until March 2010. It was unbearable and needed to be corrected, despite the cost and possible financial ruin. So I contacted my sister-in-law, Emily, a Physician's Assistant or PA. She is aggressive, loves me and kicked my butt! I had an MRI within 48 hours of visiting her office. The official diagnosis came the next day. Dr. Rob was right. I was right. Just wanted to know how big.

The answer was really big. It was in or on my pituitary gland which hangs in a bony area behind the sinuses called the cella. It had filled that cavity and was invading the optic chiasm (where the optic nerves cross over) and had also affected the muscles that control the eyes. The measurement was 3.5-4cm...basically an oblong golf ball in the middle of my head.

I really lucked out and got into Dr. Paul Nelson of IU Hospital, Department Head of Neuro-Surgery. An extremely accomplished man, he took my case as the pituitary specialist on staff. Along with excellent care from everyone at IU, he treated me well and with great respect. I could not be happier about the outcome and recovery! But maybe getting ahead of myself...

Sarah

Sunday, June 13, 2010

Closure

I had a wonderful art gallery/custom picture frame shop in the downtown Indianapolis neighborhood of Fountain Square. It's an eclectic and bohemian artist area with terrific Indypendent restaurants and night life. The shop was well-known and successful, although not particularly profitable.

But something was afoot. Something unavoidable and terrifying. I was loosing my eyesight.

A picture framer and art dealer can be deaf, mute, have no sense of smell, even no common sense, but she MUST be able to see. In fact, it's quite handy to be able to see 1/64". That's pretty small. But as time went on, I was not even able to see 1/4" reliably. I couldn't go on doing what I do, and I was heartbroken.

There was an easy solution, go on a short hiatus and take care of the problem, right?. Then the prognosis came in.

Brian and I had met with the neuro-surgeon from IU Med Center on IUPUI campus downtown. Dr. Paul Nelson (you'll have an opportunity to read more about him). A jovial and deeply thoughtful man, when asked what my chances of regaining all my eyesight after surgery replied with something I didn't want to hear.

You see, I had known about my brain tumor for a very long time. And Dr. Nelson said I may have had it all my life. So there was a possibility of some long term damage to my optic nerves. The official prognosis was: "you will have a 2/3 chance of getting 'some improvement' in your eyesight." It was said with a smile, as though that would be good enough to continue my line of work. Very sadly, it was not good enough. I had a 33% chance that absolutely nothing would change. And if it did, there were no guarantees of how much it would improve.

I didn't show it in the meeting, but I was devastated by that news. I had to close the shop. It would make no fiscal sense to go through the surgery and recovery not knowing if I would ever be able to frame pictures again--the one constant in my professional life since 1991.

I devised a way to tell everyone without divulging my own personal medical issue (though I'm prepared to write in detail about it now that it's over). I would make the art gallery "virtual"--all the shows would be on my website, on line! I thought it was an intriguing idea, and so did the Indianapolis Star, which wrote an extensive article on it. I would also make the frame shop "mobile"--I come pick-up and drop-off framing projects and work on them at a remote location. This part was purely hopeful. But if I didn't get my eyesight back, I had trusted colleagues I could refer.

So here is my apology for being slightly misleading about my closure. I am sorry. It had to be done and I felt it had to be done that way.

Sarah

Surgery

Up until now, I've written a little about framing, a lot about farming, but nothing directly about Fate. The reason I placed that word in the title of the blog is because of the surgery. It will be a life changing event and I would like to write about it.

I woke up this morning trying to remember everything about the day of surgery. I don't know why. It's a typical Sunday morning; let the chickens out, try to go back to bed, can't get back to sleep. And I started to write in my head.

I will divide the topic into a series of posts devoted to: the store closure, discovery of the tumor, surgery, ICU and recovery...with possibly another in there as well. I'll try to stick to the headings above so you can recognize the posts and read if you choose, or not. I will not write anything icky, unless it is clearly stated in the title--don't worry! I won't spring something on you by surprise. In fact there is a wonderfully informative video of a surgery like mine I saw before going to the hospital (you can find anything on YouTube). I'll post a link, but clearly mark it!

I hope this answers questions for those who know me and perhaps informs those who don't yet know me. Feel free to comment and share your thoughts.

Sarah

Friday, June 11, 2010

"...but I don't know what to do!"


Today was CHICKEN DAY! All herald the arrival of the pullets!

This afternoon, little 5 week-old chickens were delivered to our coop. They are all one breed (Hubbard Golden Comet). And they are cute -- cute -- cute.
We expect to have these girls with us for about 3 years, laying eggs, eating bugs and being entertaining. And so far they have not disappointed.

They are little things, but still too big for their legs and wings. The result of their excitement is a very funny case of clutzy chicken! They run around the coop flapping their wings; because when one does it the others think it's a great idea and follow. But they can't seem to control their speed, or their braking and crash into one another. It's like a little chicken farce.


So we were wondering if instinct would take over when it came to roosting time. If you're not aware, most birds roost at night...meaning they find a safe and out-of-the-way place to perch and sleep. Chickens' eyesight is keen during the day, but suffers at night, making them vulnerable to predators. So they (should) have an instinct to protect themselves during the dark hours.

But not these girls.

We spent most of the afternoon and evening with them, but when it came to dusk, we went inside to allow their instincts to kick in. We wanted them to roost inside the henhouse and decided we would go back out after dark and move any who didn't comply.


When we walked out, we could hear them peeping! Why were they still awake? When Brian broke into laughter--they were ALL lined up at the door of the coop! Essentially, yelling for mommy and daddy to come and get them! Brian mimicked them between bouts of laughter, "but we don't know what to do!" HAHAHA! Poor little things had not yet either been taught or understood about roosting. So we carefully scooped them up one by one and placed them on the roost. It was like a scene from Raising Arizona. No sooner had we put one in and gone to get another, than the first one was back out again and at our feet!

Tonight, they are all locked up in the henhouse. We will let them out into the coop in the morning. I wonder how many nights we will end up repeating this bedtime ritual?


Sarah

Tuesday, June 1, 2010

Our Husky

Husqvarna, that is...

I would like to sing the praises of our fabulous lawn mower. The little orange machine, Husqvarna.

It will eat anything.

Today, I made it munch -- down to the ground -- 4' high weeds (or "native wildflowers") in the chicken run portion of the back yard!

We love you Husky...oh, yes we do...we love you Husky...and we'll be true...

Sarah (and my fine orange friend)