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Journal entry by Tena May Gallivan

If, however, I am going to speak of vanity, I owe you the in the name truth. I have yet to find my oldest (dead-fishiest), but here are a few in betweens. And, no, no are not seeing anything - at least on my part, whatever you got going on today, more power to you! However, I flipped one and not the other. Who caught it? Yet to named prized coming your way!
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Journal entry by Tena May Gallivan

We all have an angel on one shoulder and a devil on the other - no matter what religion, belief or form they may take. Or, perhaps it is a Great Gazoo, messing with your 'reality,' with the possibility of blowing your whole world up in one fell swoop. Believe what you may about them, they sure do feel real at times, don't they? They aren't. They are merely the thoughts or actions you may take on any given day and what you feel that others feel about them doesn't mean diddly squat. 

Last week, I was feeling well enough to go back to teaching and it went so well that it felt like nothing ever happened. My energy feels restored, so I go on as though nothing ever happened, expecting that everyone else feels that I am all healed and it is over and passed and I am good as new. Or, so I think. So then, why do I fantasize about heading back to my nest on the sofa? I must be lazy, right? Or, so I think. 

Yes, the recovery has felt lighting-fast, besides a few visible stitches that I cover up with my hair, I look great - better than in twelve years. But, I am also sliced from hip to hip. That part isn't visible. Not even to me. I don't care to look at it, if I do, it is real. Sure, there is still swelling in my head. I don't even want to look at that because I am waiting for the final result, to see if I am really back or back or not. Or, should I just settle for better - because it most definitely is. 

But, for crying out loud, it has actually only been three weeks out! I should still be on the sofa being waited on hand and foot, right? I should still get to play the invalid card. But I can't, because I am not. Not really. But I am. At least a little. 

And yes, I want to be known as Wonder Woman who battles the worst and comes back with a twirl. And I am. To a degree. At least, that is what I show the world, and the world believes me, because why shouldn't they, I am a fabulous actor, right? End of drama. End of story. 

But, this is a bizarre situation for me and I have no idea where to go next. When I lost my vision and gained my eye-patch and my new identity it was unique and I did it with aplomb. 'Cause, why not? I had to make something of it (and truth be told, the boys like the pirate ladies). But even then, the adults of the world wondered if I was just trying too hard (okay, my projection, perhaps, but I can't ignore the looks I got), but the kids of the world were wonderful "Hey, what's up with your eye?" "It's broken." "Can I see it?" "Sure." "Okay, cool." Done. 

So, now is the reverse. That patch and my glasses have been my deal for a decade and I am at a loss as to how to integrate them now. My vision is still the same, a strip of peripheral vision on the left, that strip being permanent double-vision that, due to the absence of an eye socket, has my optic nerve (what is left), in contact with the blood flow to my brain and pulsates with that beat. It also isn't anchored and moves about at will, making see or concentrating when needed next to impossible. The other day, while going without my patch or glasses, I bumped into someone on the left - I used to be able to turn to them and explain without words. Can't do that any more. I have to spend half the time with glasses with an obstructed lens and I am confused.

To tell you all the truth, I kept my glasses and patches even when I could have done without them purely out of vanities sake. My eye was monstrous at first (my take) and after the second surgery, not as bad, but not normal by any stretch. I was too vain to let the world see the less than perfect, droopy, dopey (my words) eye without explanation. I was too insecure to go back on stage, unless, of course. Lynn Musgrave made me (thank you, Lynn). But I don't know how to re-enter the world. I have no idea who this new person is, or even what she wants. 

As mentioned before, this last year has been, bar none, the most excruciating of my life, and if you know me, you know I have had some doozies. So, at this point, I don't know if this it what I deserve, or if this is what I deserve. Angel, Devil or Great Gazoo. 

What I do know is that I have to sit, even if I feel guilty. I have to tell the world if I am having difficulty. I do not have to decide who sits on my shoulder, because I am the only one occupying that position and I get to choose. 

p.s.Before/During/After, if all posts correctly. 
p.p.s. Not looking for validation. Just telling my story.

Journal entry by Tena May Gallivan

So, for two days I thought that my superior physicality had already by-passed all that post-op folderol they tell you about - I mean, I know exactly how this goes. Ha-ha-ha-ha-ha! Fortunately, as is the case for everyone, my body is way smarter than my ego, and it told me in no uncertain terms that either the sofa or the bed was where I was to spend the near future, adding on features like not letting me put on my glasses for long, so sitting idle was my only choice. I have no choice but to obey, one day sleeping for at least 18 hours. In other words, I am doing exactly what one does in my situation, or is supposed to do. 

It occurred to me that this recovery is exasperated due to the fact that I had two surgeries in one, I have never had the abdominal surgery concurrently, and frankly, the skin/fat graft (liposuction) is what is keeps me moving at a snail's pace and will take longer to heal (read - compression shorts for at least two months!). However, this is nothing to complain about as new contouring is a total bonus that I didn't see coming! Anyhoo, my top half has its own thing going on that doesn't coincide with the bottom half and its issues. 

The good news is that I can feel some nerves beginning to regenerate. The bad news is that I can feel some nerves regenerate. I could do without the ice picks stabbing me top and bottom, but I do recall this as part of the deal and beneficial in the long run. 

You people have been so magnanimous and helpful that I am full of gratitude - nearly as full as our fridge! Our fridge, by the by, has some of the most delicious food I could imagine and leagues above anything that I could ever provide for my kids and me, if we counted on my cooking, at any rate. Thank you all for everything. The messages and visits lift my spirits when I need it the most. 

Journal entry by Tena May Gallivan

“Whose decision was this? It seems like a terrible idea” were the first words I recall uttering in the recovery room. It seemed to me like I had simultaneously had my skull smashed in with Thor’s Hammer and my torso sawed in half by a two-bit magician.

Although there were magicians, they were most certainly not two-bit. I cannot, at this point, tell you all of the tricks (but hopefully not illusions) that they performed. The surgeons ended up using different materials and procedures than planned, but the plans were always based on what they found once they got in and started digging around. Today, I can finally handle some screen time/concentration, so I ought to try reading the report again.

What I do know:
Everything went not only well, but better than expected.

The methylmathacrolate (hard plastic) that was used to rebuild my skull/forehead last time had sunken or migrated or flared out or something of that nature and needed work that I won’t describe for fear of giving any of you the shivers.

Wisely, instead of more plastic (“One word, Ben: plastics.”), they chose to do more skin and fat grafts to pad, re-contour and fill-out my skull/forehead after doing the stuff I won’t describe.

This required extra procedures that I had not expected, but were in my favor in the long run. Some of these, I still don’t fully understand and wouldn’t describe even if I did, because, you know, shivers. The short story is further redistribution of of stuff from where I didn’t want it to places that I definitely want it!

Mayo Clinic and its surgeons rock. Thanks to them, my face appears magically more symmetrical than it did even before my first surgery! And that is even with the post- surgical swelling that will take some time to settle down. Also, the weight of the droopy and swollen upper -eyelid that resulted in the scraping of my eyeball (which, since the first surgery, I have been bizarrely able to feel) is gone and my left eye is fully open for the first time in 12 years!

When they tell you that the long-acting anesthesia shots they gave you will wear off in 48 hours, they mean it. And, 48 hours after they give you those shots, life sucks.

It took longer than expected and I have wonderful family and friends who were there with me either physically or in spirit to support my unconscious-self through it. Thank you. I am profoundly humbled and filled with gratitude for all of the help.

I get to feel these feelings from the comfort of my own home now. And, I am terrible at following doctor’s orders.

Journal entry by Tena May Gallivan

Do you have any idea how much I want to scarf down the mammoth (crust-free) mountain of cheesecake with raspberries and white chocolate that I brought home from dinner with my dad last night? Well, don't bother - I did just that within minutes of my food curfew. And it was magnificent. As my last few sips of hotel coffee pass my lips, my only thoughts are with my family, my dearest of dear friends and this phenomenal community that has come to soothe my fears and guide my spirit toward the force and away from the dark side (for my nerd friends). Que sera, sera. Let's just hope that the sera is the thing that will fix every last problem in my life! Okay, let's just hope it all goes as planned...
Thank you a million times over for the wishes and prayers. They buoy my spirits and move stuff around out there in the ether in my favor. You rock. 

Journal entry by Tena May Gallivan

T-minus 21-hours to big show and vacillating between being ready to get this party started and being terrified that I left the oven on at home and/or my brain skipped a groove and I forgot something of utmost importance... oh, has anyone seen my kids? 

Journal entry by Tena May Gallivan

They say the third time is the charm. Perhaps that old saw become an old saw by containing some kernel of truth. It is as much truth as anything else I choose believe, so I will proceed under that assumption. 

May 30th, 2019 will be my third time under the knives of my wonderful team of surgeons at Mayo Clinic. The third time they open my flip-top skull (my idea). The third time they leave me better than when I went in (well, for the most part, give or take an eye - which was a very small risk from the get-go). 

In 2006, I had both a lumpectomy in my breast and back surgery to remove a cyst on my spine. That laminectomy was in November of that year. For quite some time, my left eye had been puffy. I saw allergists, bought expensive eye creams, saw chiropractors and aestheticians to massage away the puff. Nothing helped. It looked like my eye was starting to sink lower, but that couldn't be the case, could it? I assumed that I was doing something wrong and this was the consequence, but in photos it was more and more prominent. 

In February of 2007, I went in for a check-up with my ophthalmologist (I was first diagnosed with Glaucoma over a decade prior), and asked him what was up with my puffy eye. He looked up at me from the chart and said "That's not a puffy eye, that's your eyeball poppin' out." A few hours later, I was in at CAT Scan where they found a large mass behind my eye and other anomalies. The subsequent MRI revealed that I had an extensive (expansive and vast were the words my neurosurgeon would use to describe it). They were like a moss growing all over my skull base and anterior walls and dura of the inside portion of my noggin. There were also masses, or globular tumors, including the one that had invaded and conquered my left orbit. A regular eye socket should be the width of a piece of paper, mine was the width of a finger. So, my ophthalmologist was right - my eyeball really WAS poppin' out! 

Mayo Clinic is the gold standard of health care and I soon had a team of the head of Neurosurgery, an amazing Orbital Surgeon (created in the mold of a mix of Groucho and Harpo Marx) as well as a Plastic Surgeon to repair me so that I could continue to work on stage. 

Words cannot adequately describe the adrenaline high one rides in times like this, but I will try anyway: floating, racing, otherworldly, in a state of disbelief, spinning, myopic, in a haze, petrified but oddly excited. All this from just a puffy eye? Ridiculous. Unpossible (thank you Nelson from The Simpsons). 

After the 14-hour surgery, I left the OR without my Sphenoid Wing (holds up the brain), with some inoperable but very small tumors left in my cavernous sinus, near the carotid artery and without the vision in my left eye. Could be worse, right? Absolutely. My left eye looked, as my 7 year-old son said, oh-so diplomatically, like a dead fish. I was also left with 'surgical defects' which, in my case, meant a frankenstein-ish series of hills and dales on my forehead. 

From my hospital bed, as I learned that I would need an eye-patch  and  I thought "at least I get a cool new accessory," only to find that the internet devoid of cool stuff, so, I made my own. Nobody knew how long I might need it, but it turns out that I need it (or, my goofy glasses) for life as a small portion of vision returned to my eye. This was unpossible, according to my surgeons, my optic nerve had atrophied and I had to prove to them that I could see a little by having them draw a picture and after a moment, I could tell what it was! Problem, however, was that it was permanent double-vision, which I had just the night before written on this platform would be the worst outcome. Monocular vision was surprisingly easy to adjust to (at least, if you were on my right side). This double-vision also jumped up and down due to the lack of eye socket, putting my optic nerve in contact with my blood flow, so it followed my heart rate. It also moves up and down, side to side and diagonal to diagonal. It is only peripheral vision, like a rearview-mirror strip-sized and not functional in the least. As a matter of fact it denigrates the vision on the right. End of that story. Sort of. The nerves all 'got lost trying to get home' and I have sensation in my eyeball and stuff like that. Aberrant Third Nerve Regeneration. My Marx Brother Orbital Surgeon said that he had learned about this but in his 30 years at Mayo had never seen it. I was quite the medical sideshow. 

Again with the very small percentage of happening (5%, just like the damage to my eye), it turns out that I reabsorbed all the bone that they had used to fill in and bond the skull and eye socket. That surgery is when I acquired my plastic, prosthetic skull. It is also possible that I may now have absorbed that as well. It is also possible that what was left of my eye socket has disintegrated. In any case, something is wrong and we won't know until they dig in and have a look around. Fortunately, we know that it has NOTHING to do with the inoperable tumors! Just some other rare complication that will surprise them, no doubt. Hey, perhaps I could end up in the Guiness Book World Records for my 15 minutes! 

Unfortunately, this is actually the least bad thing to happen to me this year, so I will be requesting that they remove the last 12 months a la Eternal Sunshine of the Spotless Mind. After that and the bonus eye/brow/face lift and refillable fat redistribution from my abdomen to my forehead, I believe that the third time WILL be the charm. 

Thanks for your time. And as promised, no Trumpty-Dumpty. Shoot, guess I just blew it...

Journal entry by Tena May Gallivan

There comes a point of diminishing returns when you have been sitting around the house for 2 1/2 weeks. My legs were getting sore from NOT moving, so I decided that the only way to fix that was to move (and possibly incur soreness due to movement). So, I ventured back into business on Wednesday and taught my first class since surgery. I promised everyone that I would take it easy, really easy, but moderation is not something that I am good at as a rule - I have tried taking it easy before, but was soon carried away. However, my body was in charge this time and it stopped me from going too far. I don’t know that this has happened to me in the past. I was just fine until I tried to muster up a little more enthusiasm, at which point my body told me that it would soon throw up. However, I do have a wonderful soreness now that lets me know I have done something good.


Now, before I am berated for doing too much too soon, there are some points in my defense: The doctor said that it would be okay, as long as I didn’t injure my head. I knew that getting my blood flowing would not only aid in circulation (getting oxygen to the site to promote healing), but the endorphins that I would receive would do wonders for my psyche. Also, when working freelance, as I do, it is detrimental to business to be absent for long stretches of time. I know that 2 1/2 weeks doesn’t seem long to most people, but it felt like at least a month for me. And getting out and concentrating on something other than just how much and exactly where my head hurts would be the best medicine for me. I rest my case.


Just because that’s what the schedule was, I also taught Thursday morning, but it was kettlebells instead of dance, so it was much easier to give directions and not stress myself. I do, however, have to demonstrate the moves and I was surprised at how much weaker I had become in that short amount of time, it felt like I was coming back after six months off. How could my head have such an effect on the rest of my body? It is all connected, I suppose, and that time off was spent in a sedentary fashion, not even going about day to day life. I don’t care for sedentary fashion. However, I do promise rest up until Monday. I swear.


Meanwhile, when I am thinking about my head, I notice that I am itching in addition to the pain (which had gotten better until earlier tonight). Unfortunately for me, the itching occurs directly beneath my numb skull (insert your own joke here). So, when I try to scratch the itch, I find that there is no way to satisfy the itching - it is like having an itch under a cast with no way to reach it. Fortunately for me, itching also means healing, so I will take it. It hasn’t gotten as bad as last time, though, I ended up having to go on some nasty meds with side-effects that were worse than itching. I don’t expect it to be as frustrating as before. There is another hopeful sensation and that is an electric-feeling pulse shooting for about an inch at a time. I seem to recall that it is a harbinger of healing. I think. I don’t know whether I like it simply because it isn’t pain or whether it is a pleasant sensation but I would like more of those, please.


It may be a goodly while before I get the feeling back to my forehead. I was still regaining nerve connections after three years and I didn’t have full sensation even then, plus many of those connections were actually misplaced. My nerves got lost on their way home and hooked me up in some strange ways. I can feel my entire eyeball, the size and the back of it and I feel each blink and get tickled if the wind blows my eyelashes. There are many other oddities such as touching the inside of my gums and feeling it above my ear. Fun little distractions when I am bored, I guess. The strangest thing about the numb forehead is that I have a hard time washing it or applying make-up. It is difficult to describe, but even though I am looking in a mirror and I know that the activity is perfectly safe, it still feels dangerous. Either that or I am afraid that I won’t be able to accomplish the action. Something about not feeling what I am looking at and touching freaks me out a bit. That and my forehead seems enormous to my fingertips. 


Still no luck on the chocolate/peanut butter front but I won’t give up hope.


Thanks, as always, for checking in.


Tena May



 

Journal entry by Tena May Gallivan

 



As a rule, I would not recommend brain tumors as a path to prettier you, but it sure seems to be working for me. It still feels like a dream and I expect everything to fall back into place as before at any second, but it hasn’t as of yet. My swelling is way down to nearly nothing (save for the left temple region) and what I assumed was a smooth forehead due to this swelling appears to be a smooth forehead to stay!


Last week I went down to Mayo for a check up and I learned quite a bit about this surgery that I was unaware of. I knew that Dr. Bite had lifted my brows and that was fantastic, but I had no idea that the entire forehead was part of the package. He explained how there are sutures tying muscles to my skull, allowing them to re-adhere to the bone in the new, taut position. I asked “That means that it will stay this way forever?” but the answer was more like that it would stay this way until I again grew old and formed new ‘character lines’. Last week I was mourning the loss of my battle scars, but holy moly, this is a fabulous trade-off. I had been feeling leery about the final outcome, not believing that it would really be all that different, but today I decided to play with make-up and I was able to do something heretofore impossible: I applied News Anchor eye make-up! My eyes have always slanted slightly downward, preventing the classic CNN Cat-Eye look, but no more. I am considering enrolling in journalism school in the fall. 


More that I learned about the surgery was that its proper name is ‘Cranioplasty’, which I have interpreted as sort of a ‘Craniotomy-Lite’ (50% less intrusive than the leading craniotomy). I have uploaded some images of what a skull looks like with the titanium plates, as I had, and then what a skull looks like when smoothed over with plastic (the plastic image is basically where my surgery site is, while the other image has the bone flap further back). These look perfectly clean and simple when viewed as mere skulls, but what always haunts me is the thought of them peeling my face away. If it were the quadriceps  or even my chest it wouldn’t seem so wrong, but our faces hold our identities and the fact that this identity can simply be peeled away is too much to bear. However, the good doctors seem to know how to remedy this before the patient has really understood what happened. I wish that I had never googled ‘cranioplasty”.


My stitches came out and everything looked good, but I forgot to ask just how many stitches there were - I was sliced from ear to ear, so I figure that it must have been at least 25, give or take. There are a few sutures left sticking out of the incision like a clothing tag that refuses to dislodge from the clothing, but I find them amusing to play with most days. 


The pain has abated to the point that I find myself nearing full functionality (with the help of modern medicine), if only I could get rid of this darned nausea. I am awfully sick of it. Still can’t get it up for peanut butter or chocolate, but I have to believe that this will return. Last time, I had severe sensitivity to sound and couldn’t stand to listen to music for nearly six months.  I was terrified that what was so important to me was lost forever, but it was only in hibernation - so there is hope. 


There are some new photos depicting my current status as well as that immediately pre-op. I was going to add the detailed pot-holed forehead and the post-op balloon face, but I realized that those may be more than a sensitive stomach could handle, so I kept it clean. 


It honestly astounds me that you good people are continuing to follow this saga. The first round was so big and dramatic that I understood (while still being overwhelmed), but I have considered this one to be almost trivial in comparison and wondered if it even qualifies for such attention. It seems to me like the round one was like a first wedding or first child - lots of hoopla and well-wishes, whereas this feels like that second wedding or child that people should be happy about, but not beholden to celebrate at the same intensity. Don’t get me wrong, though, I still cherish each and every message and thought. 


This whole adventure continues to blow my mind (so I guess that it is a good thing that they got those holes patched up), and it is dawning on me more each day that I am a very lucky gal in so many ways, not the least of which is to have your support. 



Sincerely,


Tena May (2.0)


 

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Journal entry by Tena May Gallivan

It is the wee hours of the morning and instead of taking the sleeping pills that they gave me which keep me drowzy the following day, I am maniacally cleaning the house and attempting to finish all of the tasks that I have set for myself before we go. Today, as I was driving, out of the blue, I had an overwhelming sensation of well-being and hope and love and excitement all mixed together. This is an amazing journey and I am so interested to see what is next. I know in my heart that I will be alright, but now I just want to get this over with to see what comes next. Stephen is having a difficult time and Archie is most definitely anxious and Piper is taking out her stress on poor Archie. I wish that they could feel what I do, then they would know not to be so afraid. Not that I blame them, I would be terrified if it were anybody but me. I can't tell you how glad I am that it is me.

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Tena May’s Story

Site created on May 5, 2007

Welcome and thanks for visiting my site. 



My Grandmother had glaucoma, so it wasn't a complete surprise to discover that I, too, have high eye pressure. Drops have kept the pressure at bay for the most part and I have had no significant vision difficulties as a result of glaucoma. It never occurred to me that the puffiness in my left eye was anything other than allergies or a poorly draining duct. After doctors, aethetitians and expensive eye creams didn't fix the problem, I once again asked my ophthalmologist about it during a recent check up. He took one look and said "That isn't a puffy eye, that is your eyeball popping out." Wow. A few tests later and it was determined that I most likely have a Sphenoid Wing Meningioma which is a generally benign brain tumor. My tumor, however, is an extensive flat one, and it travels out in various directions, one of which is into my left orbit (eye socket). It looks like is has destroyed the bone, so they are going to take as much of that section as they can, and then we will zap the rest with radiation. This whole ride has been incredibly surreal and if I wake up to find it all a dream, I apologize for the inconvenience.

At the moment, I have some vision problems, assorted wierd sensations, a contstant ringing in my ears and a Picasso-esque set of mis-matched eyes, but those could be attributed to so many things - Motherhood, aging and a past of debauchery.........

It is my ferverent hope that this surgery will once and for all remove the leftover psycholigical debris that is cluttering up my brain (like, all of 1984, for instance), and replace tha space with such useful things as Universal Love and the ability to do math. Plus, I am going to request some bionics while they are in there (where are you Oscar Goldman?).

I appreciate your visit and thank you so much for the thoughts and well wishes.

Love,

Tena May

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