Still Falling After All These Years or at least 18 months -

Hello Fellow Travelers!  On this super-long journey back from the abyss, or wherever you're coming from it's where we're going that's important, right?  The price of having a brain tumor removed, my price seems to be a complete removal of balance and coordination.  That's my way of rationalizing it when I fall, and I still fall a lot.  Less than I used to, never on my head, but I still fall.  It's always a surprise, too.  I have bruises all over in various stages of color.  I fell again just last night, and skinned my back.  Unlike bruises, a big scrape or scratch (I can't even see it to describe it here) is really painful.  Every time you take a shower or change your clothes, "Ouch!" or some other colorful interjection.  Another life-changing discovery I made on this "Fantastic Voyage", is that we are all breakable.   When I was first out of surgery but taking Radiation and Chemotherapy I fell many times and broke both arms and several ribs.  All the breaking has made me a little more judicious in the steps I take and the medications I don't.  

Fellow Tumor Patients, Are You There?

Hi there fellow travelers!  I have been dealing (or not, depending on  who  you ask) with issues relating to Brain Tumors for the better part of two years and it’s only been since last Spring that I made the decision to do whatever was in  my power to develop my brain’s plasticity and regain as much motor function as possible.  I am always reminded of a great lady (my mother-in-law, she’s truly awesome!) who told me a story a few years ago about one of her neighbors in San Bruno who committed suicide.  I got the impression my mo-in-law found that to be pretty cowardly, that’s always been my thought on the subject too.  I think I haven’t earned the right to check out.  So I have never seriously considered it, as an option.  One day, I looked at the growing  real estate that was my body, and said, Well, THIS is bull!@#!” And took charge of the one thing I still could control.  It took a long time to get that far.  I still have a long way to go so if you are recently diagnosed as having a brain tumor or trying to recover from the surgery, or the radiation, or the chemo, and you can’t see, require a nap or can’t stand up straight you are lucky (to be alive)!  Don’t  waste your precious energy looking at stupid blogs, (Grafitti, with punctuation - Contagion).  Take a nap!  Take another nap.  Then wake up, take some meds(if that’s your thing), and go back to sleep.  You probably need to.  One of the kindest people I know religiously brought me treats while I was in the hospital and I still haven’t thanked her properly.  One other person sounded really angry when I called her, I don’t remember anything I ever said or did that would even irritate  this person (to be fair, I did call her at work, where she can’t stand her boss, and she has no privacy there).   Having a huge astrocytoma surgically removed, puts everything else into perspective.  Another woman (Sarah Jessica Parker, I don’t know for certain if she’s awesome or not, I would like to think she was, awesome, that is) said,”That was like taking a bullet.” I just  got home from my son’s seventh grade Back-to-School Night.  Now that was like taking a bullet, but six months ago I wouldn’t have even considered going.  Any time prior to eighteen months ago, I never would have dreamed of not going.  So although I would love to hear stories of hope and inspiration from other brain tumor survivors, I know what it’s like just not being able to do anything.  When your only job is to get better and you can’t.  It does get better, so gradually you don’t notice it at first, but it does.  I’ll stop now before any more bullets come flying my way.  I don’t expect any, but then I wasn’t expecting a brain tumor either.

Walking Medical Miracle or Just Hard to Kill???

Hi there!  You know when you see a zillion ants scurrying like mad to and from their hill or home or whatever?  There is always some large insect, maybe a beetle or even a butterfly on it's back that the ants aren't yet attacking, the ants just scurry around the flipped over obstruction.  You know as a kid you could be a good samaritan and flip that beetle over because you know if you leave the huge bug on it's back it is completely helpless and soon the ants will notice the larger beetle and carry it away, the ants just see dinner for their queen.  That's a good description of how I feel every day, like the world has turned upside down, and me with it.  I feel pretty healthy if the world would stop spinning I'd be fine.  If the ground would stop falling away from under my feet, I would be able to repair some of the damage the brain tumor left.  One of my doctors remarked that I was a "walking medical  miracle", since the cancer was really gone like it was never there.  Getting rid of the tumor came at such a high price, I'm not sure I can pay it.  I'm reduced to  relearning basic physical skills that I learned as a baby and I'm not suited to it.  I can't speak, I'm not exactly sure why so I type, a lot.  At the end of the day, I'm grateful to be alive but living is painful and a big struggle.       I feel like I'm a large bug on my back,  just set me on my feet and I'll be fine!  If I have to retrain my brain to balance, walk, see, etc.,I could be here forever.  Doctors will be the first to tell you they still only have three ways to treat you:  (1)  Medication (2) Counseling (3) Surgery.   I don't believe in the first two and I have enough information to not have much hope for "miracle surgery".  I hope I'm wrong and I often am wrong, because I still have a lot to do and people counting on me.

So I guess I'll keep working towards better-than-before-recovery.

Thought for the Day:  Do you think that Matthew McCaughnehey called up Lance Armstrong after he was stripped of all his Tour de France titles and said something along the lines of:  "Dude, really?  Duuuuuude!"

Disasters, Tiny or Epic, I've got All I can handle...

Hi there! Hurricane Katrina, Mt. St. Helen's, Loma Prieta were epic disasters. My recent dental work, and the pain and disruption resulting from it, is a tiny disaster, globally speaking. But for me, when faced with huge daily challenges and new mechanical difficulties, even with the small ordinary tasks,  I replay the Mission Impossible Theme in my head. Da, da, da - Da, da, da... Play it in your head and imagine climbing onto your bed (or falling as the case may be), brushing your teeth (A frustrating experience just getting the paste or gel on the stupid toothbrush), da-da, da, da, da, da, da... tying your shoes (Another ten minutes, and usually my spouse reties them), da, da, da,  da, da, da, da, da, do, do, doo(well you get the idea).  Now that I am getting muscles, I feel like I have to snap into action for any tiny disaster of epic proportions.  With my current post-op deficiencies, anything additional is huge whether it's tiny OR epic in nature. This camel can't take one more straw. I am currently maxed out on adrenaline pumping, life-threatening  disasters.  My cup doth runneth over, or, enough already!  Everything is freakin' epic!  So I better be ready...Da, da, da, da...

Thought for the Day:  Can a claustrophobic be a hoarder?  I don't see how.

Drugs, More Drugs and then No Drugs At All

Hi there!  I don't know who (if anyone) regularly reads this, but I try to write from my patient's perspective and as a former(and possibly future) patient I should probably address the pharmacological buffet that I was prescribed immediately following the surgery to have the tumor removed.  I was prescribed a variety of Narcotics, Hypnotics and Benzodiazapines (and a lot of other stuff) for a host of post-surgical issues. Pain, oceans of pain.  Anxiety (MRIs), sleep(or lack thereof), dizziness and no balance.  From strongest and most helpful and least invasive on down to the current (I don't take anything and haven't since November of last year). What I can remember is the following:

1.  Fentanyl - Patch 50/75/100 - Yes, they were narcotic patches that were supposed to stick to you, and when they stuck, they were pretty effective.

For "breakthrough" pain I was prescribed LOTS O' pills.  When you are in true agony, there seems to be NO relief.  Pills affect everybody differently and everybody the same:  In the end, you need more pills.  That seems to be the common sentiment amongst doctors, patients and pharmacists.  And they don't fix anything.  At all.  Having said that, here is a list of all the painkillers I was prescribed in 2011 (that I can remember):

2. Dilaudid - 2 and 4mg
3. Oxycontin - 40mg/x2 a day
4.  Morphine (in pill form/what strength ???)
5.  Hydrocodone - 10/325, 7.5/500, 5/500 (generic for Vicodin/Acetomenophine)

And those are just the narcotics!  When I was going back and forth to the hospital a lot, I was also prescribed everything from Xanax to Lorazepam(the former made me sleepy the latter made me nuts!)

About a year or so ago I had enough.  None of these pills in any combination were ever going to repair my eyesight, or restore my balance or remove the dizziness.  I'm beginning to understand, all that will have to come from me.  Maybe there was a period of time when I needed some medicine to heal and a lot of rest.  When you have brain surgery or let's be blunt, any trauma that really and truly messes you up, it's all just medicine, it's not fun or relaxing or anything good.  I look back on that time as lost and painful.

Since my husband is very much into health and we are trying to speed up this interminable healing process I go to the gym and practice walking seven days a week.  I see the world and everyone in it very differently.  I still feel as though I'm under siege, 24/7.  I figure the least I can do is keep in shape for the huge challenges thrown my way every day and lighten my carcass as much as possible (so there's less of me for my husband to cart around).  My head still hurts a lot of the time. Nothing helps, so I don't take anything. A doctor, when hearing about my desire to stay narcotic-free, remarked, "Pain means you're alive."  I hope so, I'd hate to think all this suffering was for nothing...

Commercials on Previously Commercial-free Channels, What's Up With That?

Hi there!  So, as I know I've mentioned, I have been in the unfortunate position to watch far too much television.  Enough to decide my world will be a far healthier place sans t.v..  I don't insist on this radical departure for everyone, just me.  As soon as I can walk across the gym and snap it off, the t.v. will stay off.  In the meantime the flatscreens rule my life and most of my entertainment comes from a cable box. Everything looks so good in High Def!  What doesn't look so great(and sounds even louder during commercials)are the advertisements that now break up previously ad-free movies and shows like IFC.  You're trying to watch an edgy, F-Bomb laden, independent film and a commercial for a new Toyota runs periodically it's really disconcerting.  When the car (and corresponding Geico insurance ads)commercials are over, and there is nothing else to sell, the programming wizards at IFC might treat us to a behind-the-scenes-look at whatever garbage they might be generating be it a movie or something they're whipping up just for IFC.  You get perspectives from the new actors, the director and the "older" actors.  Well I wasn't really watching. but I heard enough to know that the newer actors (Shia LaBoef, Tom Hardy and Jessica Chastain) spoke about the movie a little and the old actors spoke a lot about the movie and the thrill it was to work with such hugely talented people as Jessica, Shia and Tom.  I was typing away, largely ignoring this "show", and then I heard the "old" actors, Guy Pearce and Gary Oldman!  They aren't that old!  Especially Guy Pearce!  Thanks Independent Film Channel, for making me disconcerted AND making me feel very old.  Thank you for that!  I feel less independent than I did an hour ago, but I'm ready to buy a new Prius.

Thought for the day:  Is it just me or IS Jessica Chastain a slightly newer version (I mean slightly, like 4 or 5 years) of Bryce Dallas Howard?  A Hollywood Clone, perhaps?  Someone really should look into that...

Wheelchairs: A Rant Based on a True Story

My wheelchair and I have been together for 18 months or so.  It's the only piece of medical equipment I rent, I have never learned to steer or turn properly and I routinely get stuck in doorjambs and narrow hallways.  I really believe the chair is a very temporary necessity and I don't wish longingly for a power chair with a cupholder.  Being in any sort of wheelchair demands a whole new set of challenges be anticipated and overcome in any situation.  For me, it's easier to lose the chair.  I'm almost there, too,  People look at you differently too, or look right through you, as though you're not there.  People look over your head at your caregiver and talk about you like you're deaf.  When I return this "thing" to whatever medical supply place it came from, if there is a form to fill out about it's returned condition (like rental cars) I hope there is a box to check for"Beat to Shit", there really isn't any other way to aptly describe it!  What else can I say about the "Conveyance-from-Hell"?  That it encourages bad posture?  That it makes the user shorter and lower than most countertops and tables?  That it requires almost daily cleaning?  All that could be said and lots more. I won't say it.   What I will say is that learning to use the wheelchair properly and not pulverizing doorways, would be tantamount to giving up.  So, I haven't, I bash with abandon and I'll never quit.  Can you tell I don't hold these chairs in particularly high regard?

Caregivers-The Unsung Heroes of the Brain Tumor World

I don't know about today's title, maybe there are tons of places where caregivers are honored and revered, I haven't seen them and I've looked.  My husband knows me better than almost anyone and he has cared for me and done the lion's share of caring for our small family.  I can't do even minimal tasks, Sean makes coffee, dinner and most decisions.  He deals with all the doctors offices and handles all the insurance people, stuff I used to do really well.  It's more tedious than I realized, he's also incredibly patient when he's dealing with all the different pharmacy people and lab people and people in general.  Several of those very same people have told me that it's really obvious how much he cares for me, they can tell by watching Sean with me.  Whether he's helping me walk, into the car, or at the gym, he pays a lot of attention to my safety, he still makes me laugh every day.  Usually more than once!  When the doctors didn't know where to send me and how to treat me, Sean knew.   I feel (and look) very different than I did before the surgery to remove the tumor, I'm really happy and at peace.  I can't be sure why but I know my caregiver has a lot to do with it.

PS - Did I mention he doesn't get paid?  

Tremors-Never Before-Increasing in Appearances and Frequency

Hi there!  I'm now faced daily with various body parts,  mostly head and hands, shaking,  It used to be predicated on stressful situations, but lately, it happens all the time.  Especially if I'm physically fatigued, I can make the shaking stop if I focus on it, hard.  These tremors and the weakening right hand have me truly concerned.  In other news, my dominant left hand is getting better at fine motor skills, but I never know when  it will fly off and go in a completely independent direction.  It makes me wonder if my Southpaw is motivated by something other-worldly.  (Meaning something other than me.  Like "Seinfeld's Jimmy Leg")Like, I'll be doing something ordinary that I can still do, like washing my hair and my left hand will vibrate like a divining rod and quickly and smoothly dart out.  What's up with that? I don't know, I've never known.  Someday, I'll look deeply into it.  Right now, it's just another, amusing disaster.

P.S. - Do you want to review Mitt Romney's tax returns?  Me either.

Another Day, Another Disaster...

I know I've spoken (or written) about being left-handed breaking that hand and subsequently relying more and more on my right hand for almost all fine motor skills.  Well, my trusty right hand has been increasingly weak (or  it has seemed to me)and as I was running bathwater last night, I realized my right hand wasn't registering hot/cold.  I checked it again later, waiting until my fingers were positively pruney, same result, no feeling at all where temperature is concerned.  Today I have simply dropped lots of items, repeatedly, so I'm performing the same "field tests" on my hands as yesterday, and it's heat my right hand isn't feeling, my spouse suggested it might be a delayed reaction to Temodar, which I reacted badly to anyway.  I am fairly  freaked out the loss of my one, good hand would have a huge impact on my daily circumstances.  So, if anyone reading out there have any bright ideas or heard of this condition in general, please indicate!   One bike ride/60 min/level 2 - 2 walks

It Must Be A Slow News Day or Possibly An Election Year...

Hi there!  It's difficult not to be distracted from my objectives when such amazing things are happening all over  the world.  For example, some American "law maker" was skinny dipping in The Sea of Galilee!!  The crap you miss when your brain is injured.  The entire country runs amok!  I laughed my cancer-free head off about that! I am still managing without a wheelchair whenever I can and typing with two hands. Although you never know what that crazy left is going to do. Seriously, you don’t. If the brain is as plastic as it’s supposed to be and if I’m as stubborn as I think I am, then I’m supposed to be able to retrain my brain to do little, ordinary things.   If you are keeping score, I periodically see some of the doctors who worked on me. Next up? The neurosurgeon who operated on me in January of 2011. His perspective is unique and easy for me to understand; the tumor is way gone, he did a great job! The fact that the surgery left me in dire straights might be inconsequential or collateral damage, you know, the cost of doing business. I have a few questions for him but no high hopes or great expectations from Dr. Aliabadi. I’m sure he believes my surgery was a total success, from his standpoint, it was. He’s really, really, thorough if there is something tangible out there, he’s probably heard about it.

Plus, it's a rare opportunity for me to look at someone on the cutting edge of neurology and say without irony, "What the Hell, dude?"  Or, absent that, getting my husband to say it for me.

OK, here's another potential distraction that has got all kinds of peoples' underwear in all kinds of bunching:  Some poor Congressman I have never heard of said something unintentionally hilarious about "Legitimate  Rape",  I mean, where do you even start with that?  I feel sorry for that doofus!

Abbey Normal

Hi there! I'm still looking for the perfect title for this blog, all suggestions will be equally considered. I like the current title. It pays homage to the worst human being produced in many centuries and my long-time fascination with that individual and his minions, and the origin of some of my problems (I mean the kopf/head part, not necessarily the Hitler part). I didn't come up with it and I've always thought it to be a little too Teutonic, I've got actual Germans writing to me, in German because they think I am German too! Nein!  Nein! Ich bin ein Russischer! Just kidding about the Russian part but I am hearing from a lot of dudes from the fatherland and in the mother tongue.

Magnetic Resonance Imaging - Unchanged Since 1985

8/18/12
Hi there!  Let's talk about MRI's.  I have  been told that MRI's will be a permanent fixture in my life.  I hate them.  I'm really claustrophobic and there is nothing in nature that sounds like that.  I never get used to the noise, it's really loud, for 20 plus minutes.  I am in a narrow tube all alone, if I falter, I have to start all over again.  So, I never, ever, falter.  Since I have (Thank God) long finished Radiation and Chemotherapy, a MRI every so often, shouldn't be any big deal, right?  Wrong.  They are scheduled just far enough apart so you forget just how loud and obnoxious the process is.  And long.  It's nobody's fault, I have always been fairly phobic, but being inside a big, noisy, tube has brought that fear into focus.  Realizing that many people feel something akin to my feelings where being locked into a noisy tube is concerned,  the lab I go to offered tranquilizers, which I gratefully accepted.  I was a nervous wreck anyway and they gave me 10mg, or one tiny pill of Ativan.  Now Ativan, (or Lorazepam) apparently sedates a lot of people, it has the opposite effect on me.  Not only am I extra sensitive, I'm also bat-shit crazy with Ativan.  I took the little, sad, pill, thinking the professionals knew what they were talking about (they did not know me, or anyone like me).  So I was keenly aware of how entombed I was, every noise was amplified and the minutes crawled by.  That I have to repeat this process at least annually, probably more often puts me in a panic!  I've got another one coming up.  And no, Ativan will NOT be on the menu.  18 miles/2 Walks today

(Brain Dead Need Not Apply)

8/17/12-Yes, I did see that, next to a job posting!  I remember it, because I recall thinking that comment was far more interesting than the job sign was written for.  I recently started attending Brain Tumor Support Group Meetings at UCDMed Center, partly because Brain Tumor patients and doctors think that brain cancer is very different from other kinds of cancer. Mostly I go for the speakers (so far, forward thinking neurosurgeons) and topics that specifically apply to Brain Tumor patients.  So it's two hours well spent.  I have noted that I seem to be one of the most impaired people there, and yet I might be alone in that my tumor is completely gone.  It seems my other com-padres either have tumors that are visible but inactive,  active but growing at varying rates, or have just been recently diagnosed.  Not only did I have a tumor-type normally found in kids, but I have no trace of it left.  So again, I just don't quite fit in here, either.  Maybe that's a good thing?  I dunno.  The people that knew me "BS", (before surgery), always politely ask, "How did this happen?"  or "Where did the Tumor come from?", and since I can't speak, wonderful husband gives a short, heartbreaking, explanation.  I just want to say, "It doesn't matter where it's from, nobody knows, The Good Fairy, The Good Wife, A Past Life, A Past Parent, Cell Phone, Cereal - none of it makes any sense, they just don't know."  And really I guess it's important as part of my personal history, but knowing where the tumor came from does not tell me how to live today.  Even if my doctor could tell me where tumors come from, who cares, anyway?  Not me.  (1 Bataan death march / 50 min bike Level 2)

PUT YOUR AD HERE-8/16/12

Hi there!  I have had too much time (in Hospitals in doctors' waiting rooms, waiting rooms for MRIs)being  crippled, hanging around ER's at various points to watch too much television.  So much, in fact, that I discovered an entirely new set of channels on basic cable.  My particular favorite has been ID (I think it's short for Investigation Discovery), I will always think of it fondly as the Tumor Channel.  This channel has primarily hour long programs that are reenactments of salacious murders and move very slowly, making this channel ideal for the gym or any place where dialog is too cumbersome.  The shows have gripping titles like: "Happily Never After",  "I Married a Mobster", and my personal favorite, "Who the @#$@ Did I Marry?"  Believe it when I tell you that after a couple of weeks you feel like you know the profilers (I really relate to Candice DeLong)and you start being empathetic with the "Deadly Women"(he needed to be bludgeoned with a 9 Iron, she's just misunderstood!).  I also know ALL the "Housewives", all the "Chef-testants", all the captains/crews on Deadliest Catch, and I am even familiar with the judges on "Cupcake Wars", "Top Chef", and "Food Network Star".  I know absolutely nothing about any Kardashians.   I could be a member of the "Fashion Police" (or at least go to the Academy), and I've sampled everything HBO, Showtime and STARZ have to offer.  At the end of the day, I will be thrilled to ditch all remotes, 3D-glasses, and corresponding cable boxes.  Soon, in the meantime, "Greetings, from TV Land!"

Another Day In Paradise

8/15 -  (Your Name Here) Let anyone reading be forewarned - what I am about to report isn't all chuckles and upbeat anecdotes.  Cancer, all kinds, and the treatments for cancers are a deadly serious business.  I'm in the fight of my life and don't think for a minute I don't know it.  I can't see, walk or talk.  I now type with one hand, and I worry my right hand will completely give out before the left recovers.  They both shake.  I wonder if I'll ever wear high heels again.  Or be able to see well enough to put on makeup or fix my hair. Right now, the answer is anything but certain.     

I refuse to accept this as my new reality.  The wheelchair, the sitting down a lot, not being able to do anything quickly or gracefully, all that and much more!  My husband has been a wonder to me, every day.  As in I wonder why he's still here, neither he or my son signed on for this. Of course, neither did I.  It's been taking a really long time to recover, I've always lived primarily in my head and took all my physical abilities more or less for granted.  Relearning to walk and talk seems so daunting, too big for me to do.  As well as very silly.  I also look as though I've been somewhere really scary.  I had what I can only conclude were really scary dreams immediately following surgery.  My head now hurts when I'm dreaming too.  Every movement, every decision requires extraordinary planning and strength.  Getting into bed, for example, is hysterically funny, we have a new bed, very tall. No matter how I approach it, I'm always falling on it, in some way, it's ridiculous, so I started thinking, it won't be nearly as funny in five years, or two years or even this year.  Then what will I do?   Build a platform?  Don't think so.  15mi/1DM(=death march=practice walk)

8.14.2012

I have a long-standing, deep-seated, loathing of all things arachnid. Now I just have a healthy respect plus I find the initial encounter with any spider to always freak me out a little and usually result in the demise of the poor spider. When I was in kindergarten, the school showed the entire student body, “Tarantula”, early 60’s B/W, you know the old story: Government goo gets on a spider in a lab, spider starts growing and growing. Ends up the size of a mountain, takes US military bombers to finally take it down. Lamest special effects, smallish tarantulas, I have heard that Shatner is in it. I slept with my parents for a week! I bore you with my history in Spiderworld, to better explain my surprise and agitation (and empathy, it WILL DIE!)when, just by chance, I run into a large or unusual spider. This guy or gal was a striped, spread out in a newly built web, large and weird type. It was right in front of me. I almost fell down the steps! So I had to make a decision; give up my space, go inside and hope that the surprised animal (did I mention it was HUGE?) would finish it’s evil business and go away! ORRRRContinue on my merry way, and carefully watch from an appropriately safe distance while wonderful husband battles said monster! Spiders and I have a deal: they can live coexistently with me as long as they stay out of my line of vision. If I see them, they will be dispatched! Naturally, the deal is a little one-sided, since it’s all in my head and no spider has ever survived long enough to object. Of course wonderful husband set striped monster free in a hedge, where I will be watching for it.  I rode 59 minutes or 25 miles/One BDM (Bataan Death March).

Well, I figure I wasn’t watching the world at all until recently and the 2010’s are decidedly different from the 2000’s. Case in point: Girls. You know that old saying about “the more things change the more they stay the same?”Today’s girl seems to have a blondeish, sleek hairdo from the 60’s, no color on the face except real pops of color on the eyes,(also from the 60’s and possibly the 70’s) and blue fingernails!(I don't know when or where those come from) That’s the only place I object, it looks silly and does nothing for the wearer except draw attention to her fingers which now look stubby even if they aren’t. I love all the chunky jewelry, the newish sweater sets and bold, bright colors. Big, pink lips and dazzlingly white teeth also seem to be essentials. I don’t fit in here, either. I made the decision a month or so ago to get my hair cut, really short. What I didn’t realize, is that there was a curly, healthy head of hair in me, just dying to get out. And, to the great surprise of all present, the healthy hair reasserted itself since I had all the radiation hair (what was left anyway)cut off. My hair dude was relieved, my mother-in-law commented favorably but it was my five year old nephew who saw me last week who asked innocently if I was my son’s other Grandma, that put it all in perspective for me.

Thought for the Day: You know the Olympics are winding down when the only things on are Rhythm Gymnastics (Drag Queens or Russians? I’m still not sure.) and BMX.

8/11/2012

I give you a perfect example of why I have to stay on my toes, and why I hope there is a solution to this balance/vertigo issue. We were in Tahoe having what should have been a wonderful dinner at a nice restaurant. Instead, I was navigating or not, the entire time. Where to sit, how to eat, how to drink, don’t even get me started on the Ladies’ Room! I soon gave up eating and drinking because I was too shy and way too self-aware, but I’m glad we went. I might starve to death but at least I’ll be able to “watch yummy food” go by.

I’ve done one Bataan Death March earlier today(As I fondly refer to my practice walks), and will probably do another tonight. But first, I want to set a new personal best of 60 minutes on the exercise bike at the gym.

I’ve developed a whole new appreciation for baseball, specifically Giants’ baseball. Love the mellifluous voices of the dudes who call the games. There are many great qualities about baseball, one of the qualities that I like is its’ consistency. It’s always there and like McDonald’s it’s everywhere and always the same! With the speedy time we live in, and everything changing, I now appreciate consistency. And the Olympics, I’ve really enjoyed these.   

08/08/2012

 First a few lines about me. My name is Jan. I was diagnosed with an astrocytoma (malignant brain tumor) in the the fourth ventricle area of my brain. It was removed successfully in January 2011. Subsequent courses of radiation and chemotherapy were also successful. So successful that the last few MRI’s show no sign of tumor. I was misinformed or misunderstood that if I took my meds and rested, I would get better in a year. I didn’t. I still have headaches. I can’t write or speak, my hand shakes, and I have persistent double vision.

The one symptom that bothers me the most and has me stuck in this freakin’ wheelchair is the constant dizziness and total imbalance. I will try, take, undergo almost anything to relieve this. If anyone can swear by or vouch for anything, I’d love to hear about it.

Doing the most basic tasks reaches epic proportions of effort and planning. In spite of this (or because of it) I am hopeful and have been pretty positive, for the most part. The glass is full again, and every morning I’m excited to get up and see what's going on. I stopped taking any narcotics or benzodiazepines last fall. They weren’t working for me anyhow and they had some rough side effects. I decided a while back, that I needed to be as sharp as I could be to navigate the many obstacles that I encounter daily. Because, let’s be brutal and really blunt, this feels as if I’m being assaulted every day. I have been working out/rehabbing daily since February. At long last, it occurred to me that I am getting and feeling better. As I improve, I am also feeling angry. (believe me, it’s a good thing) So what better time to share-the-love? If anyone could benefit or chuckle from my daily foibles, my day will be complete! (OK, that was more than a few lines, I realize.)

8/8/12-It’s my birthday I won’t say which one, but I WILL say my days are neither nifty nor fabulous and 2011 sucked! They can talk forever about 2012 being the Mayan “end of days” or whatever, and I really hope it’s not, but 2011 started out with a previously healthy woman discovering she had a giant, malignant, brain tumor! The year kind of went downhill from there... I had the tumor removed, broke both my hands and a couple of ribs falling, lost my voice someplace, and worst of all I’m super dizzy and have no balance (that contributes to the falling part). I also am really clumsy and have a headache all the time. On the plus side, I have NO tumor anymore, I’m done with radiation and chemo, and best of all, I have a wonderful husband who stuck with me through this particular stretch of hell. And, no I did NOT see it coming. My hair is also making a full recovery. My 11 year old son doesn’t appear to be too traumatized, but he hides his stress really well. And, no, 11 year old and stress should never appear in the same sentence.