Today I take Nothing for Granted

I suppose I'm lucky.

I have the strange fortune of having a serious issue without any significant risk of dying. Serious enough with risks enough that I am spending my final pre-surgery days appreciating the small things. Serious enough that I've had the fortune to see how many lives I've touched.  For many people, this doesn't happen until after they die, and then it's too late for them.

Yesterday I did a long spin class. I worked hard, my heart pumping, my legs burned with exertion, I sweated and I looked impressive (if I do say so myself :) ).  It will be at least 6 months before I can even get on a spin bike again.

I drove the car.  A small thing, independence. The freedom to come and go, even if it is the tediousness of doing errands, or the excitement of finding trashy novels for 50 cents at a second hand store.  It will be a while before I drive again.

I sit comfortably on the couch.  Feet up on the coffee table, sipping coffee, laptop on my lap, tv on in the background.  Sitting is going to take a couple of weeks, and even then it will be in small doses.

I ran up and down the stairs, doing laundry, tidying up, lifting, bending and reaching.  I will spend the next couple of months relying on other people to do that for me.

It's a weird thing, this appreciation.  I can't actually know until Thursday, how much I should appreciate today, yet I think about appreciating the things I can do today.  Is it possible to really know?  I don't think so.

But in the meantime, I'm thankful.  Thankful for those people who are thinking of me, praying for me, helping me, supporting me, preparing to do those things I won't be able to do, only because they care.

I will have successful surgery, I will get better, and someday it will be my turn to be the person thinking of you, helping you and supporting you.  And I will do it without hesitation.  Because you have touched my life.

Dr Google and the Neurosurgeon

Contrary to the advice from my rheumatoid specialist, I Dr. Googled.  (Dr. Google: term for using google as a medical resource ... usually resulting in incorrect self diagnosis and unnecessary anxiety.)  I googled everything I could possibly find about this kind of tumour, and it's sister, astrocytoma. I googled all weekend, hours on end, reading everything I could find.  And there's lots to find.  Just not much that is actually helpful beyond the technical details of what this tumour is as defined by the scientific community. And pictures of other people's MRIs.

Site after site described the same thing over and over.

• usually in the cervical spine of adults, in the brains of children
• much more rare than brain tumours
• most common symptom is generalized back pain
• there are three locations of ependymomas -
• extradural (55%)(1). - between the vertebrae and the spinal cord (risky). 
• intradural-extramedullary(40%)  - within the outer layers of the spinal cord but not inside it (high risk) and
• intramedullary (5%) - inside the spinal cord (very high risk).
• most people aren't diagnosed until they start to lose motor control (an interesting tidbit ... I read over and over that people with the tumour in their cervical spine are usually first diagnosed with carpal tunnel syndrome).
• details of the surgical procedure ... heck, you can even watch the resection of this tumour on youtube! (it isn't for the weak-of-stomach).

I also googled my neurosurgeon.  Again, a dangerous thing to do because everyone's experience is different. My advice is to stick to those sites that identify your surgeon's technical skills, training, certifications and professional memberships.  Skip the "rate the doctor" type sites, and judge for yourself. (My official opinion will need to wait until post surgery, but so far he's the right guy for me).

I think it's safe to say that I had done my research and found what there was to find, by the time I saw my neurosurgeon. 

Fast forward through the part about the reaffirmation of my diagnosis, and his shock that I am still able to walk, to his description of this surgery.

He was concise. He was blunt. He was graphic. He held back nothing on the risks. He used the words "I could paralyze you". He said he has to cut open 5 vertebrae. He said he has to cut into my spinal cord. He drew pictures. He confirmed the things I had read in the medical journals.

Hello.  You have my attention ! 

He spent an hour with us answering every question we asked, but as I was leaving his office, I realized that his directness and intention to scare me was a tactic. A very clever tactic.  If you've ever been around people, you know that people don't listen.  They may hear you, they may believe they heard what you said, but they filter, interpret, spin, soften or modify whatever they are hearing based on their own capabilities to comprehend or to cope.  My neurosurgeon got through that mental game and had my complete attention. (Confirmed by later comparing notes about the conversation with my ever-objective and rational cousin who heard the same message.).  I'd rather be scared and understand the facts, than deal with someone warm and fuzzy but who doesn't have the hard conversation.  I want the nursing staff to be warm and fuzzy :)

Even knowing everything that the surgery entails and that the risks are terrifying, the alternative is that Herm will eventually paralyze me.

There is no net risk. There is no decision.  Let's go.

(1) source: http://www.ajnr.org/content/27/4/818.full

Manage Your Heathcare. Because no one else will.

My symptoms started about 7 years ago.  A mystery tingle in my left shin. It would come and go with no predictable pattern.  Sometimes it would wake me up in the middle of the night. Sometimes sitting for long periods would bring it on.  Sometimes alcohol would trigger it.  The only "cure" seemed to be to walk it off. 

I was doing a lot of running, so my first visit was to my Sports Med.  When there was nothing he was able to diagnose, he sent me to a neurologist for some nerve testing.  Everything firing "A okay".  A medical mystery.  As I got used to it, the periodic tingling became more of a nuisance than anything else, so I continued on with life (and running).

About 2 years ago I was woken in the middle of the night by a searing pain in my lower back. What the heck?  I tossed and I turned but there was no relieving the pain in bed.  Getting up and moving around for 20 minutes - problem solved (but of course by then I was too awake to go back to sleep).  This continued on random nights for 6 weeks before I decided it wasn't just a pulled muscle or other running injury.  The pain manifested in the lumbar area over my left hip ... it felt muscular. The pain was no where near my spine, I had no mobility issues and the pain went away quickly after mobilizing.   I'd been around the block more than a few times with running injuries, so knew to give things six weeks to heal on their own before persuing it.  In August 2010, with the six week time period duly elapsed, I trundled off to my Sports Med.  Again, a medical mystery, but he sent me off for a lumbar and hip MRI.  Finally in October 2010, it came back as totally normal aside from the very beginnings of rheumatoid arthritis.  Ahhh, if the MRI had only gone up another 8cm (3") they would have found Herm.

Well, arthritis isn't a sports thing, so I went to see my family doctor.  I didn't tell her I'd been through a series of tests with someone else, I just gave her my story.  She sent me here, there and everywhere. To a pain clinic, for x-rays and blood work and came back with the same diagnosis ... the very early stages of rheumatoid arthritis.   Everything you read about rheumatoid arthritis tells you that the earlier you start specialized treatment, the better your long term prognosis, so I asked for a referral to a rheumatoid specialist.

She said no.

Really?  No?  But, having the same diagnosis from two separate sources is pretty concrete, so ... okay.

Over the next several months I started to get the back pain in the middle of the night more often and more severely. The tingling in the leg was more frequent. I did all the research I could find on rheumatoid arthritis and the diagnosis started to feel more and more wrong.  It just didn't feel right.  Even my daughter asked me when I was going to get my back figured out.  Well ... okay.

In September 2011, I found a new family doctor, told her my story and asked for a referral to a rheumatoid specialist.  Without hesitation  she referred me to someone close to my office, appointment duly made for a few weeks away,  and off I went.  The specialist asked me a lot of questions, bent me this way and that way and finally came to a conclusion.  Her diagnosis?  I had something, but not something that she does for a living.  She thought there was a very remote possibility that it could be ankylosing spondylitis, but I don't have any of the other symptoms. Just to be sure,  she ordered an  MRI. 3 months later,  I finally got my MRI appointment ... well, I'm presenting as mild rheumatoid arthritis, so I wasn't exactly a medical priority, and I didn't push for an earlier appointment either.  Why would I?

My appointment was for 9pm on a Tuesday night.  No big deal ... full head and back MRI took an hour and a quarter.  The technician told me it would take 7-10 days to get the results to my Dr., so not to worry if I didn't hear anything before then.

My doctor called me the next morning. 

That's the call you don't want to get.  "Um, I think we might know what's been causing your hip issues but I need you to come see me".  "Tomorrow".  Oh boy. Denial is an amazing thing. I chose to deny her sombre tone, serious demeaner and super-pleasant manner.  She told me she was referring me to a neurosurgeon, and I asked her to write down the diagnosis on a piece of paper. 

Her parting words to me: "Be careful about how much importance you give to what you find on google".

Wise woman. Dr. Google is dangerous.

As I look back the what if's are staggering, but the biggest lesson is to listen to yourself, your body and your symptoms. If no one will believe you, keep searching until you find someone who will.  I could have ended up paralyzed because my family doctor sent me to a pain clinic instead of a neurosurgeon.

4 More Sleeps - a Time of Lasts

As I do things in these final days leading up to surgery, the phrase "this is the last time .... " keeps popping into my brain.  I force myself to modify the sentence to "this is the last time  .... for a while".   Some of those "lasts" I'm happy to give up for a while.  The last time I'll have to grocery shop, the last time I'll take the commuter train, the last time I have to tidy the house, the last time I have to wear a suit, the last time I have to do laundry ...

But mostly, this is my last day of work. 
 
Let me clarify that. The bank says I have to go back to work once I’m feeling better, so this is my last day of work before surgery.  I don’t work at the bank, but they have this thing about wanting me to pay my mortgage … go figure.

Work has been challenging.  The hospital where I first heard my diagnosis is close to work, so my appointment had been set for the middle of the morning.  Go to work, quick duck up to the specialist’s office to talk about what they’d found on my MRI, then back to work and on with my day.  That was the plan. Another day in the life.   That “day in the life” changed drastically when I heard the words “I’m referring you to a neurosurgeon”.  Neurosurgeon.  That’s a big word. A stunned walk out of the hospital, stop by SO’s office to break the news to him over coffee, then on to the office.  When I walked into my office my phone was ringing – the neurosurgeon’s office calling with details of my appointment. The following Monday.  Bring a family member. When the medical system moves that fast, something is seriously wrong.

Looking back, I have no idea how I got through that day or most of the following weeks.  Telling my boss and my staff that I got the phone call that no one wants to get. Mysteriously disappearing off to appointments before more than a handful of people knew what was up.  Reassigning responsibilities and wrapping up projects. It has been 9 weeks since I heard the term intramedullary ependymoma. Those first few weeks are a blur, and I can honestly say that beyond a few key moments, I don’t remember much.

I’m thankful for the supportive, helpful, positive and encouraging people at work who have put up with my spaced out, unfocused and dazed days. They know I’m not going to walk around and say goodbye, or make a production of my leaving, or - heaven forbid - hug anyone.  I’ll miss you and I know you’ll miss me.   I’ll see you in a few months.

Quietly exit stage left.

Blessing or a Curse? Musings from the Gym - Part II

It’s taken a while, but I’ve noticed a trend in good symptom days and bad symptom days.  Over the past year, my symptoms have been slowly but steadily getting worse. Not enough to cause panic, but enough to get my attention.

Yesterday was a bad symptom day.  Walking caused pain and ache in my back, both feet and calves were tingly and my left thigh was burning for most of the day.  Lying down alleiviated the tingles, but brought on the back pain.  Catch 22.  Today is a good symptom day, just mild tingling and burning in my left leg and a very, very mild back ache.  Yesterday I didn’t go to the gym, today I did.  Hmmm … upon reflection of past good days and bad days, there is a trend there.

Which leads me to consider … what if being in good shape caused my symptoms to be lessened which in turn caused a delay in the diagnosis which allowed Herm to grow bigger?

I can’t fault the medical community (aside from my first family doctor, but that’s for another post).  I have a fabulous Sports Med who has seen me through stress fractures, strains, pains and almost every running injury you can think of.  When a runner presents with mysterious tingling in the left shin, and the nerve testing reveals everything is firing as it should, well … I must have jostled, bumped or scarred my sciatic somewhere along the way. When a runner presents with lumbar pain and poor core muscles (because all they do is run), well … that’s fairly normal too.  The lumbar and hip MRI done a year and a half ago showed nothing but the beginnings of arthritis.   Aaaah, if they’d only gone up another 3 inches, they’d have found Herm.  But pain is weird and presents in strange places … at the time it was lumbar, and there was absolutely nothing unusual higher up my spine.

What if I hadn’t been running?  What if I’d been just your average Josie, busy working, shuffling kids of to this activity and the next, eating okay but sitting on the couch?  Would the doctors have looked harder?

What if I hadn't started workouts in the gym?  What if I hadn’t been keeping my back flexible, my core strong, and my legs and lungs moving hard? Would the symptoms have been worse?

Ah, the “what ifs”.  Did being fit make it better? did it make it worse.  Maybe one day the sports people and the medical people will get together and figure it out.  But for today those questions remain unanswered. I will keep working away at weight training and cardio right up until surgery day because it keeps me sane and eases my symptoms.

Musings from the Gym

I used to run marathons. Then Herm came along and ruined my fun.

My neurosurgeon thinks that Herm has been growing for 7-10 years, so he actually kept me company for most of my running life, but he got a little too big for his britches two years ago and started messing with my back. The onset of back pain was the offset of running … when the pain of foot-hitting-ground impact became too much, I had to stop.

But, I didn’t know what else to do.  I had been one of those skinny kids.  You know those teenagers and 20-somethings that eat everything but never gain weight.  Then I hit my 30s … hello metabolism slowdown.  So I started to run, and once again I could eat whatever I wanted.  The only problem with that approach, is when you stop running, you don’t stop eating.  I’m blaming Herm for the change in my physique … with marathon training you can eat whatever you want, sitting on the couch, no so much!

After a year of slothful moping, muscle atrophy and 10 lbs of icky flab, I got off my butt and found a gym.  You know, one of those places where all the buff guys hang out and grunt, and the ladies are rock hard, and everyone is super-snobby. They’re not like that now.  Apparently gyms have changed as exercise goes mainstream.  Gyms are now full of people just like me, and I’ve learned to enjoy weights and spin classes.

Gyms are an interesting place.  If you go at the same time every day, you’ll see the same people, who use the same lockers, and do the same workouts. You make up nicknames for them because you don’t really get to know them.  It’s kinda like being back in primary school. 

In my gym, there’s “buff boy” … the guy who works out six days a week, and takes his workouts veeeeery seriously.  There’s “Luggage lady” who trudges into the gym every morning with all her gear and toiletries in a wheely suitcase (same size that I took on vacation for a week). There’s the two guys trying to impress each other (then probably going to Craiglist to see if they’re mentioned in Missed Connections).  There’s the obese lady that I admire … the courage to come in every day and be the largest person in the gym, the dedication to make life changes, and it looks like she’s losing weight. There’s the personal trainers who slog every day through the boredom of clients who want it to be easy.

I wonder what they think of me. When I walk on the treadmill, they have no idea that just a short time ago I could do ½ mile repeats at an impressive speed (okay, my really, really serious runner friends will be laughing at that, but for us every day folk with a desk job, speedwork is impressive).  When I’m flopped on a mat stretching out my back and hips, they have no idea the burning feeling in my legs or the pain searing down my back. Pain is invisible, and for now I have no scars to prove it.

One thing I’ve learned from this is everyone has a story.  We just don’t know what it is

Arachnoids and Personal Hygiene

"A midline incision and subperiosteal dissection of the paraspinal musculature exposes the lamina and spinous processes. The level is confirmed by radiograph. A laminectomy or laminoplasty is performed exposing the dorsal dura.  ... A durotomy is made in the midline, and the dural edges are tacked to the soft tissues laterally, exposing the arachnoid overlying the swollen spinal cord …." (1) 

They expose the spider?  Really?  Hmmm ... a bit of dictionary.com and I am soon corrected.  Arachnoid is a layer of the spinal cord,  Arachnid is a spider. I guess I failed the arachnology unit of high school Biology :)

All this contemplation of spiders, got me to thinking.  Men grow play-off beards, what about women? (no, not woman beards ... there's laser for that).  Some women grow hairy legged spiders on a regular basis, but that hasn't really been my thing.  Problem is, I'm going to be laid up for a while, and I have no idea what to expect. When will I sit? When will I walk? When will I shower? When will I be able to bend? The normal person is probably not as obsessed about these details as I am. Not that I’m a planner. Or a control freak. Or compulsively organized.  Maybe a  bit of go-with-the-flow attitude would likely make my life more relaxed.  

But that wouldn’t be me.

I focus on the details.

• How do I make sure there’s food in the fridge at home when I get discharged (um … hello … can you say FAMILY!  Or when all else fails grocerygateway.com).
•  I need to make sure the bed has clean sheets because I’m going to be in it for a month (really? A month? Again .. FAMILY !!  I’m not the only person on the planet who knows how to work a washing machine).
• What about all those 20 minute jobs around the house I’ve been meaning to do … I can’t have visitors in the house with the state it’s in (really? Like they care?)

But ... the hairy spiders.   The planner of all planners  (me) has had to make a choice … coerce someone into shaving my legs post surgery, or deal with it now. Really?  Can you even PAY someone to shave your legs?   Not so sure.  But ... you can pay someone to wax them. So, this planner is venturing into the realm of waxing.

Waxing  in itself is not so bad … it’s the getting there.   But, it's play-off season right?  If men can grow those icky scratchy play-off beards just because their favourite team is still in the running, surely us lady folk can cultivate some hairy spiders.  And for not nearly as long as the play-offs!  Just until it reaches just past "socially acceptable" length.  Then I can pay someone to plaster hot wax on me and RIP THE HAIR OUT from the roots.  


But in the meantime, my  significant other is not so thrilled. I'm sure he doesn't think much of my letting-all-follicle-hell break loose. While he hasn’t said anything specifically, he just can’t help the eye-dart and the “seriously???” look.  Soon to be gone,  and not to worry, gone for a while. Because, while I wouldn’t hire anyone to shave my legs and other bits … I would ask him. So to spare him, and for my post-surgery vanity, I'm growing my play-off spiders.

(1) source http://emedicine.medscape.com/article/251133-treatment#aw2aab6b4b2

What's up with recovery?

I’ve been able to find so few articles on what to expect during recovery.  When I asked my surgeon,  all he said was that the physiotherapist will get me walking and going up and down stairs in the hospital, then my goals over the next several weeks and months will be: walking on a treadmill, stationary bike and swimming.   Hmmm … not very detailed. 

I did find a blurb in one article on-line, but to what degree these things will be true for me, is to be determined.  It will be interesting to reference back to this to see how much of this was part of my recovery. My apologies to the author for adding my commentary in brackets :)

"A typical regimen of postoperative care for patients after surgery for intramedullary tumors entails the following:

1.       A level body position for 24-48 hours (your ass will be in lying down in bed for two days, except when we're hauling you up to pee)

2.       A 3-7 day steroid taper (the steriods will knock your socks off so we’re going to have to wean you off it)

3.       Foley catheter until out of bed (that one needs no further explanation)

4.       Sequential compression device and subcutaneous heparin for deep venous thrombosis (DVT) prophylaxis until ambulatory (until you’re walking, you’ll have compression pumps on your legs so you don’t get blood clots that cause you to stroke out)

5.       Incentive spirometry until ambulatory (we’re going to make you take long, slow, deep breaths until you’re walking)

6.       Careful wound monitoring for cerebrospinal fluid (CSF) leak (we’re going to poke and prod the incision to make sure we closed you up properly)

7.       Physical therapy, occupational therapy and rehab. Virtually all patients will have some degree of sensory dysfunction that is a result of dorsal column manipulation during surgery. Most patients benefit from a course of inpatient rehab." (surgery causes trauma and you may have (hopefully) temporary movement or feeling issues that you need to work through.  A physiotherapist is going to kick your butt and make you move, whether you like it or not).

Patients get no dignity.

Edited to add a post-surgery note: All 7 of these things were true for me. I was in bed for a week, large doses of steriods to control swelling that tapered over seven days, catheters for several days, compression pumps for a week, not many breathing exercises, but lots of wound inspection and INTENSE physiotherapy for 6 months.

 (Source www.emedicine.medscape.com, author Alfred T. Ogden, MD.)

Cross Border Shopping and the Birkenstocks

I’m not a shopper. Never really have been.  Not one to research prices, sales, clearances, discount outlets or the like.  If I need something, I buy what I can afford when I need it.  It sometimes means I pay more than if I’d waited for a sale, but I'm really not excited by the shopping experience, so that’s okay. 

So, when my cousin suggested a day of cross border shopping  to stock up on recovery necessities, I thought: hmmm, not sure, okay,  a new adventure.  I’ve never crossed the border just to shop before, never been to the big outlet malls, and it’s been a while since I’ve cruised a mall just for the sake of it. She seemed excited to hunt for bargains, and my daughter - the shopper - was enthusiastic about coming along.  (There’s a “me forgetting my credit card ” story in there too, but that’s for another time.)

We set off early for the long drive, and made our way easily across the border.  The older gentleman customs agent manning the booth could not have been more bored by three women crossing the border to go to a mall.  Mind you, it didn't look like he gets excited by much. He ushered us through with only one question ...  "your car"? ... um d'uh ... I have a Nexus card and I'm sure my plates just poppped up on your computer.  Seriously ... why do they ask questions to which they already know the answer? But, he ushered us through with a swipe of our passports and we were on our way across the border.  A quick hop and a jump (with no speeding  … the last thing I wanted was to be  pulled over for speeding in a foreign country), and we arrived at the mall for opening time.

It reminded me that I really don’t like malls unless I'm in the mood to shop, and looking for something specific.  Were there deals to be found? Absolutely! (ask my cousin about her dress), but malls are malls are malls.  I had been warned, but was unprepared for DSW.  Designer Shoe Warehouse.  We don’t have those here.  I suppose something similar, but not as big and not as many good deals.  Have you met a woman that doesn’t like to shop for shoes?  What stiletto doesn’t make a woman feel sexy?  I may not be a fan of the shopping, but I do love my shoes.  The three of us looked at each other ... and scattered all over the store.  I headed for the clearance at the back ... not sure what happened to the others :)

Right.  No stilettos in my immediate future. The sexy, pointy toed (and one rounded toe pair newly added to the collection), 3-4” stilettos will be packed away until the day I can wear them again. Stop looking at the heels.  Stop.  Don't even pick them up, let alone try them on.  Sigh ... the last pair of shoes I tried on were a $900 pair of Ferragamo sandals.  Granted,  I was dreaming with the $900 sandals ... I would never spend that much for some straps of blue leather and sparkly gold heels.  But they were fun to try on.  

Focus. Flats.  Flats suitable for hospital wear. Flats that slip on. Flats that offer support and are sturdy. Flats that are durable. Flats that can be worn either barefoot or with socks (if I ABSOLUTELY have to).  That’s what I need.

There is only one brand that fits the bill.

You got it.

From Blahniks to Birkenstocks.

Thanks Herm.

Scrubs

In one of the many, many conversations I’ve had with my cousin about Herm the Worm, we were discussing  my “Go Bag”.  This isn’t emergency surgery, and  I don’t work for  Agent Hotchner  so I’m not sure I can justify calling it a Go Bag, but it sounds so much more important that way.  

(Sorry, I got distracted and my mind wandered off to thoughts of Criminal Minds … Agent Hotchner is hot.)

 Anyway, we were talking about what I should pack for the hospital.  In the best case scenario, I’m going to be there for 5-10 days, so it’s important!  Well, I suppose it’s not really important.  I could ask someone to bring me what I need the next time they come visit, but thinking about what to pack is a good distraction from thinking about the actual surgery, so that’s my excuse. 

The Go Bag.  What to pack in the Go Bag.  The usual: toothbrush, toothpaste, brush, books, trashy magazines, my Playbook and Blackberry (okay, I’m being optimistic here!).  Those are obvious, but what about “what will I be allowed to wear”?  Dear cousin suggested scrubs … you know, those outfits that medical and pseudo-medical staff wear.  She suggested the style with a button up or zip up top because I won’t be able to lift my arms.  Yeah … I hadn’t really considered that a 12” incision down the middle of my back would cause some grief in being able to put on a shirt. (Can you say DENIAL???) 

Well … give me a cause to Google and I will.  Questions needed to be answered. Where can I buy scrubs? What do they look like?  How much do they cost? What size am I?  (In order: on-line or anywhere near a hospital, same as what you see doctors and nurses wearing on tv, anywhere from $20-$50 a set, medium).  Research duly done, I coerced a friend to go with me to the closest scrub store at lunch.  Helllloooo Mobb!!  (That’s a brand).  Separates, matchy-matchy, every colour you can imagine. Like sweats, but classy, lots of pockets and they make me feel  like I look important! Dr. Sarah, strutting down the hall!  Yeah … my friend slapped me back to reality … “um, I don’t think you’re going to look like you’re just freshly showered and ready for a hard day at work, the IV might give it away”.  Sheesh … rain on my parade.

Regardless, I came out of the store with three sets, one of them is bright pink and none of them are black!  I know it shocks most of you that I would buy something pink … but I thought I’d live on the edge a little. Just this once.

 I’ve been able to wash and dry the scrubs a few times in order to soften them up, and even though I’m “saving them” for post-surgery, I sneak them on when no one is looking and wear them around the house.  One thing is for sure … my entire summer is going to be spent in scrubs.  Getting dressed again for work is going to bite.

Elastic.  Nothing is better than an elastic waist.

Laminectomy

Reminds me of lobotomy.


Laminectomy is my new word for 2012.  I'd never heard of it before until I saw it written on the Inpatient Surgical Package given to me by my neurosurgeon. In the space for "Surgical Procedure" was written the words "Thoracic Laminectomy for Tumour".


Thoracic ... okay, I remember that from first year anatomy (a looooong time ago).  That'd be the middle part of the spine.
Tumour ... okay, we talked about that.  It has since been replaced by the word "growth" when medical people are talking to us non-medical folks about strange things growing in our bodies.
Laminectomy. ... what the heck is that!


Hello Google !  When I typed in "laminectomy for tumour", Google returned medical journals, hospital sites, research papers, and talk boards where the only people posting were the worst case scenario.  Yipes!  I spent days researching, and after talking to my doctor, I think I have a handle on what it is.


Vertebrae look like this (this one is lumbar, but close enough).

The Spinous Process is the bony part you feel when you run your hand down your back.  The gap between the Pedicles is where the spinal cord runs through your vertebrae.  Hmmm .. somehow the surgeon needs to get from my back, into my spinal cord. Seems to be a lot of armour in the way!  Thus the word-for-the-year ... Laminectomy. Complete laminectomy involves cutting both Laminae, and bye bye Spinous Process.  For 5 vertebrae.  Nice.  An alternate, where possible, is to leave the Spinous Process and just take out one Laminae on each vertebrae, but I won't know what he had to do until the surgery is over. Herm the Worm is a pretty fat guy. (Update: my neurosurgeon did a full laminectomy and removed the spinal process of 6 vertebrae to remove Herm the Worm).

I asked the neurosurgeon if he pins or fuses the bone back in and he said no.  Well, since I find the whole thing fascinating (when I forget that we're talking about ME), and the anatomy pretty cool, and if the bony pieces are going to be thrown out ... can I have them?

"NO". 

Again, I am an alien.

Morphine

Named after Morpheus, the Greek god of dreams.

On the positive side: It tells the receptors in the brain to dull pain and to produce a sense of euphoria which relieves fear and anxiety. It's too bad they don't give it to you in the weeks leading up to surgery to relieve the fear and anxiety of what's coming.

On the negative side: Morphine's sedating effects impair physical and mental performance and decrease hunger.  My question is .. how much of what I say and do in the first couple of days after surgery can I blame  on the morphine?  Surely it's a great excuse to sleep through the hospital visit by the boring neighbour or to say complete gibberish to the yahoo from the office.  And really .... is decreased hunger ever a negative side effect?


I don't think I've had morphine before, and those who have, tell me I'd remember if I did.  Here's to hoping it does its job because the pain of the first few days of recovery is the only thing causing me anxiety. I trust the neurosurgeon to do his thing, and I trust the rest of the medical team to do what's right ..... I just need to trust the painkillers to do their thing.

But if the side effects of morphine turn me into a drooling, incoherent, spaced out crazy person - take video :)

"You will wake up in ICU"

Oh. Okay.
I’m not sure how else one responds to that, but what goes through my mind is: ICU on the way in to the hospital, bad, ICU on the way out, okay.


I had my set of pre-op appointments, which turned out to be mostly an exercise in hurry up and wait. Visit with the pharmacist .... wait ... visit with the recovery nurse .... wait ... visit with the anasthesiologist ... wait ...  and the waiting room TV gives me an indication of just what daytime TV is going to be like for my recovery.  Shoot me now.   I'm accepting all offers of loaner DVDs ... TV series, movies, whatever ... just save me from Maury Povich and Judge Judy.


The pharmacist. Apparently I’m an alien. She asked,  “You’re not on any medications .... none ...  no supplements .... no vitamins ....  nothing for the pain.”.  Um, no, no, no and no.  That makes me an alien I suppose, but it also makes me an easy patient, and that can’t be anything but good for me. She signed her blank form.


The recovery nurse. She stabbed me, put sticky pads all over me, and gave me the low-down on the recovery process. Thus the “you will wake up in ICU, and they’ll probably keep you there overnight”.  I guess it’s better to know, but the term “ICU” doesn't bother me. Heck, wake me up wherever you want as long as I have the right people paying attention to me, checking what needs to be checked, and pumping me full of powerhouse painkillers.

I will get to wear the oh-so-sexy hospital gown for the first few days. You know, the open at the back, tie at the neck-and-waist gowns, made of pale blue cotton that has seen better days. Such a flattering colour for all skin types. I’ll be a sight to see … hospital gown, mens boxers and my Birkenstocks, stoned on morphine. I promise, I’ll have my legs waxed before surgery so I don’t totally look like a tree hugging, granola eating, Birkenstock wearing, pot smoking  …


“You’ll have a morphine pump, and don’t be a hero, use it”. Oh trust me … I won’t be a hero.  There isn’t anything about this surgery that is making me nervous except the pain of the first few post-surgery days. Life experience tells me that things are never as bad as I built them up and expected them to be, but it’s human nature to fuss, fret and worry.


The Anaesthesiologist.  The one person to whom you tell no lies. They have your life in their hands. You want to know how much I weight?  I'll tell you, but you have to promise to deduct 5 lbs if anyone asks .   Any allergies? Any previous issues with anaesthetic?  The usual questions you would expect.  A little unnerving to know just how many tubes, IVs, stents and other sundry things will be assisting me through the surgery process, but as long as she keeps me breathing and my heart beating ... I'm good.


At the end of it all, lots of questions answered.  Google is brilliant about finding me research papers, medical journals, and studies about ependymomas, and the surgical process to remove them (you can even watch it on youtube.com if you want), but nothing about the human element, or the recovery process. 

Thank you to the pre-op staff for adding the "people", understanding what happens after surgery, and telling me "oh, you're SO young".  Gotta love that :)

Introducing Herm the Worm

This is me.
Well, me and a visitor.  A creepy dude that doesn't belong, taking up some prime real estate inside my spinal cord. Squishing all the nerves that are entitled to a peaceful and roomy existence. That big blob (circled in red), isn't supposed to be there. (Apologies for the quality ... I'm new to blogging and getting an image from the MRI software to a jpeg was a challenge).

He's known to the medical community as an intramedullary ependymoma in my thoracic spine (more precisely ... inside the spinal cord in the thoracic region). To me he's Herm the Worm. A guy that took up residence 7-10 years ago, got all comfy cozy and started to grow.


I suppose the good news is that I'm not a hypochondriac ... the 7 years of mysterious symptoms, mostly attributed to my compulsive running habit. Years of foot tingles, shin tingles, burning sensations in my thigh. Two years of searing back pain at 3am which mysteriously disappears as I walk around ... all explained by Herm.  I was a bit of a medical mystery during those years, and I remain so today. Given the size of the tumour at its widest, my neurosurgeon isn't sure why I'm still able to walk.


Well, Herm's gotta go. Left to his own devices, he'd paralyse me within the next couple of years.  Unfortunately he won't go quietly ... he's more like the tenant from hell that you wish had never moved in.  Big, bad, ugly surgery is the only way to evict him from his cozy home.


So, to all my friends and family (and complete strangers) who wanted to share in the journey, I've caved to the pressure and joined the blogging world.


Let the fun times begin.