Boss Fight - Surviving the Surgery

I apologize for my silence, friends.  Last week, I prepared for a battle against a group of vampires.  I thought I was prepared - I'd armed myself, gathered my allies, and formed a strategy for attack.  But I didn't anticipate their numbers, or encountering a Master Vampire.  I'd only fought a Master once before, about six years ago, and he nearly destroyed me.  With the help of my allies, I managed to defeat those bastards and escape, if somewhat narrowly.  I spent three days recuperating, and I'm still not back to 100%.  In celebration of our victory, as soon as I was able to get on my feet, I took several days away with a few close allies.  We laughed and ate fine food, relishing our brief respite, for this battle may be won, but the war goes on...

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Twitter post April 5: Battle time. My allies are gathered, & I even have a soundtrack.

Last Tuesday, April 5, was my surgery.  The plan was to go in and remove any unhealthy bone - as my surgeon described it, if the bone didn't bleed right, he was going to cut it out.  This was because both the surgeon and the infectious disease doctor believed the necrotic and diseased bone prevented the antibiotics from being delivered to the infected site, since there was no healthy bloodflow to those areas.  By removing anything that appeared unhealthy, we hope that this time the antibiotics can more easily reach the affected areas.  He removed a significant portion of my upper mandible, and another big part of my lower mandible.  I lost another tooth (bringing the total to four now) because there wasn't enough bone underneath it to hold it in place.  The jaw part of the surgery went well, but because I'm me, and can't do anything simply, there were other complications.

Soon after the anesthesiologist put me under, my lungs started having problems.  My oxygen levels dropped really low, and I went into tachycardia - the medical term for increased heart rate.  This happens when the heart is under distress, and can sometimes indicate imminent heart failure.  I didn't flatline or anything, but I significantly scared the surgeon and the anesthesiologist that they almost stopped the surgery.  They were able to stabilize me, and the surgeon made the decision to go ahead and operate and just try to get me out from under the anesthesia as quickly as possible.  When I woke up, I told them that my right arm hurt (which had nothing but an IV in it) and that I couldn't breathe.  Fearing that I had thrown another clot and was suffering a pulmonary embolism again, the surgeon and the OR team rushed me to have a CT of my chest.  The scan showed no embolism, but rather a condition called atelectasis - basically, my lungs had partially collapsed.  So I was placed on oxygen, and there was talk of putting me in the ICU.  In the end, they put me in the progressive care unit, which is for patients who are slightly better than those in the ICU but still in need of considerable monitoring and care.

As my dad said in response to me telling him all this, apparently I don't do anything halfway.  Including scaring the bejeesus out of my surgeon.  I'm told I'm medically famous now, as doctors warn each other about me and the weird stuff that seems to always happen to me.

I went through Tuesday night on pressurized oxygen, with my heart hooked up to a portable EKG, a pulseox monitor on my hand to monitor my oxygen levels, compression machines on my legs to mitigate the risk of further blood clots, and a new IV in my left arm - they had to pull the one in the right due to what we later discovered was, you guessed it, more blood clots.  Needless to say, it wasn't a very restful or comfortable night.  My throat was also really sore from the intubation tube.  The doctors came into tell me that my bloodwork showed low dispersion of oxygen in my blood and an elevated level of troponin, a protein secreted by the heart when it is under stress.  My levels weren't crazy high - I think the said the upper threshold of normal was like 5 or something, and people who are having a heart attack are at 20 or 30.  So it wasn't super severe, but given that I had no known heart conditions, the hospital wanted to keep me until they could ascertain that the distress in my heart and lungs was caused by the anesthesia and not something else.  Which I appreciate, because if I went home and felt sick, that's one thing, but if they sent me home with an underlying cardiac or pulmonary problem, well, that could end not so well for me.

Five million tests later (I'm sure this is an exaggeration, but this is what it felt like), including an ultrasound of both my arms before placing a PICC line to ensure there were no major clots in my large veins, I was told the doctors were satisfied with the test results and would be letting me go.  I did have another PICC placed, as I'm back on a super ridiculous IV "antibiotic of last resort" called vancomycin, which had to be placed in my right arm.  The brachial vein in my right arm is apparently FAR larger than the one in my left - this means that it was much, much easier to place the PICC this time, and a lot less painful.  It also means that I can't lift anything heavier than 10lbs with my right hand, which is my dominant side, which is kind of inconvenient and annoying, but c'est la vie.

The doctors discharged me late Thursday afternoon, after which I accompanied Matt, while doped up on liquid Vicodin (it tastes like 99 Bananas, I swear - and as Matt said, that's not a good way to discourage drug addiction, haha), to the airport to pick up two friends who were visiting.  I was really anxious about not being able to be a good hostess and show them a good time due to being Swelly McSurgeryFace, but the weekend went extremely well.  I had a ton of fun, and probably wore myself out a little too much, but it was well worth it.  I'm still off work for a few weeks, so I can catch up on rest during that time - being with friends is incredibly energizing for me, even when it tires me out.  It makes me feel hopeful and strong and unconquerable, because I have such a large number of fantastic people pulling for me.  The posts on my Facebook wall and Twitter, the texts, the emails sent to me by so many people -- I honestly feel like I wouldn't have come out of that surgery as well as I did without all these wonderful people from across the world spending a few moments to send prayers, good vibes, and meditative thoughts my way.

Additionally, this game really helped too.  The mission from Erin to list positive outcomes from the surgery helped me to not be so anxious and worried during pre-op.  I brought up the list on my Blackberry and just kept looking at it when I would start to think bad thoughts.  I told the nurses about SuperBetter, and they all thought it was a fabulous idea.  Several commented that they thought it could really help other patients.  Maybe when I'm well, I can try to set up some kind of program for patients at the hospital.

The missions from last week and this week, the achievements - all of these help me to not feel alone, to find ways to defeat my "bad guys" (some of which I am still discovering), and to not feel like a lazy bum when my Type A side starts wailing that I'm not being active enough.  I am so incredibly glad to have had this in place before the surgery, and to help me with my recovery.

Overall, I'm okay.  My face is still partially numb, because the surgeon had to move my nerve to operate on the bone and thus bruised it slightly.  The numbness should be temporary, and I already am feeling pins and needles in the area.  I'm mostly just really exhausted.  I'm working on giving myself permission to do nothing and rest without feeling guilty or like I'm "wasting time." This is also why I appreciate Courtney's mission to watch the movies and TV shows you all suggested - it makes me feel like I'm still doing something (I'm questing!) while sitting on the couch.  My right arm is feeling better - the clots had made it super, super sore over the weekend.  I also randomly burst a vein or something in my side, reaching down for a water bottle on the floor.  I am awesome.

My breathing is better, my heart seems to be fine, and my jaw looks like it's healing well.  Let's keep our fingers cross that this surgery and the new antibiotic will kick this thing for good.  Thank you SO MUCH to everyone who wished me well and sent healing thoughts to me this last week.  I am stronger because of you!

Calm before the storm (health update)

Things have been quiet here.  Too quiet.  Something is brewing, I can feel it.  Early last week, I caught a vamp. I thought I had him, but then the bastard took me by surprise.  The fight was brutal, and it took a lot of work by the clerics, my allies, and potions to get me back on my feet.  My Wolf nearly got loose one day, that's how bad the damage was.  This week there has been....nothing.  It makes me uneasy.  Today, I am meeting with yet another cleric, who has yet another idea on things that will help me fight the Evils.  We'll see.  I try to enjoy the break in fighting, but all I can think is that this feels like that eerie, prickling calm before a storm.  Well, when it comes, I'll be ready.  I'm done being caught off guard.

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So I had the biopsy last week, and considering I've had three surgeries on my jaw, I didn't think the biopsy would be any big deal.  Oh,I was wrong.  The incision was much bigger, and much more painful because he had to cut a section out of my bone in three places.  Using a drill.  My face was crazy swollen, bruised, and painful.  It's been a lot better this week.  On Wednesday, I went back to the surgeon to get the biopsy results.  Good news: I don't have bone cancer! Bad news: The bacteria grown by the culture in my lower mandible, while still the same bug shown by the last two cultures, is now showing a resistance to the antibiotic I'm on.  I'm allergic to penicillin, so it's back to the infectious disease doc on Monday to see what we can do.  The culture from the upper part of my mandible didn't grow any cultures at the time of my appointment, although the surgeon said that the lab was still working on a few specimens.  He said it's possible the hole in my jaw as seen on the CT scan is a genetic anomaly, which I would believe except it's painful to touch.  So he's sending me for an MRI this afternoon to get better images of the mandible and see if it's really something to worry about or just the way my bone is formed.  Erin helped me feel better about all this by telling me that it's possible to determine new damage from anomalous growth on the MRI.  Hopefully, we will have a definitive answer soon.

At any rate, I definitely need a massive surgical debridement of the lower mandible.  The surgeon said it's like excising a tumor - he'll cut until he finds healthy bone, and then cut a little bit more to ensure he's removing all of the infected area.  He'll actually be removing a section of my bone, and he'll have to move my nerve out of the way during the operation, so I will have some post-surgical facial numbness.  He said that the numbness should go away, so I'm going to keep my fingers crossed for that.  Facial paralysis and numbness scare me more than anything else about this whole thing.  The MRI will help him determine how extensive the surgery has to be, and right now we're looking at doing the operation the week of April 4.  And of course, a friend from Pennsylvania is coming to visit April 8.  Murphy's Law, in effect!

I feel okay about this treatment plan. At least I feel like we're moving forward with something more aggressive.  The surgeon called the procedure a "definitive operation", so let's hope he's right.  I'm not kidding when I say that I just can't keep dealing with this.  I need it to be over, or at least on the path to being over.  Surgery after surgery after surgery with no effect isn't cutting it anymore.  I'll say that I'm "cautiously optimistic" and go from there.

Not actually dead!

Hello, allies. I apologize for being out of touch for a while - and let me tell you, you all were AWESOME with checking in on me. Even if I didn't respond, please know that your texts, Facebook messages, gchat messages, visits, and phone calls meant a lot to me.

The last two weeks have been very challenging. I feel like I'm back like I was last March - my face is swollen, I can barely eat because the swelling prevents me from opening my mouth very much, I hurt, I'm exhausted and generally don't feel well. Last week I felt very isolated, as Matt was out of town, which you all helped with beyond measure. This week, it's just been the illness and exhaustion. Monday I had a biopsy done on my right mandible. Today I went back to the surgeon as my face still looks like I have a golf ball stuck in my cheek and it's incredibly painful to touch - even putting the ice packs on it hurts. He said that this was to be expected, as the biopsy was pretty invasive, and no cultures were back yet. I meet with him next week to discuss further surgery, and meanwhile, I'm on a lot of Vicodin.

I have not gone into work at all this week, and will not likely go in tomorrow. This is a big struggle for me: To accept that it is alright for me to take time to heal. The logical part of my brain knows that my workplace wants me to get better, and to do what is necessary to achieve that. That my job is protected, even beyond the legal requirements of FMLA. But there's a part of me - we'll call it the ridiculous masochistic crackheaded part - that doesn't feel I'm ever sick enough to stay home. I argue with myself constantly over this, because I always feel like I should just suck it up and go in, that I'm not dying, that I'm not even as sick as other people I know. I have illogical fears that my boss is mad at me, that my coworkers think I'm taking advantage of FMLA or being lazy. I have fears that I actually AM lazy, and that a better person would just go in to work. I feel like I'm exaggerating my illness and injuries because I'm not actually on death's doorstep. I truly cannot explain how hard this is for me to accept, and the guilt and anxiety I battle with when I do stay home.

This is a monster that I have struggled with long before I ever became ill, and one of the hardest for me to battle. I can handle the pain, the vomiting, the exhaustion, the swelling, the anxiety, the pain, the pain, the pain, but for some reason I cannot handle allowing myself to rest.

I ask for reassurance on this ad nauseam, probably to the irritation of Matt and other friends, but it's because it is incredibly difficult for me to give myself permission to stay home. For this reason, I truly appreciate all the times you all have reassured me, even if you wanted to smack me at the same time.

I'm giving myself a mission of updating this blog in the next few days: getting my daily activities for the last couple weeks compiled, acknowledging ally achievements, updating the achievements and missions logs under Game Basics, things like that. I'm also giving myself a mission to reply to all of you who contacted me. You held up your end, now it's time for me to hold up mine.

I do have a few proud moments to share though. I've been sleeping for 2-3 hours after coming home from work, then getting up for a couple hours before going back to sleep for 10-12 hours a night. I apparently need the sleep to heal, and I have not felt like doing much. Last week, though, I managed to do a short yoga routine and the energy workings taught to me by John (The Medium), as well as take the dog for a 30-minute walk. On Wednesday, despite my swelling and pain, I walked for over an hour with Jamie (The Armorer)! I was really proud of myself, as this was a huge accomplishment for me in light of my current state of exhaustion. Also, I think it was spurred on by the fact that Jamie and I would walk to New Mexico if you let us - once we get to walking and talking, we just don't stop, haha.

I wanted to get a bunch more stuff up here tonight, but I'm going to take satisfaction in what I DID achieve, give myself permission to rest, and work on getting the other postings and responses up over the next few days. I just wanted to acknowledge you all, because truly, this game is helping me to keep going, to not feel so alone, to draw strength when I thought I had none left. Please know that all your efforts are deeply appreciated, even when I don't respond. :)

Another health update

As mentioned, I saw the surgeon today.  He took X-rays and concluded that the antibiotics just hadn't cleared the infection, and that I need more aggressive treatment.  What that means is a major surgery where they will remove any area of bone that looks infected.  He said they will try to save as much of the bone as possible, as well as preserving my facial nerves, but there is some risk of facial numbness. 

So will you guys still hang out with me if I have a big scar on my face/neck and possibly have droopy facial features?

As I was leaving the surgeon's office, I got a frantic call from my immunologist.  They had run an immunology panel on me on Wednesday (hence the seven vials of blood), and along with that, I requested they run my INR, which I have to have tested weekly to manage the blood thinners I'm on (which are themselves a result of the deep vein thrombosis and pulmonary embolism I had last month.)  The lab reported back that my INR was 9.7 -- it's supposed to between 2 and 3, and anything greater than 5 is considered dangerous.  Another measure, called a PT, was 109.  Normal is like 25-30. 

What this means is that I'm at extremely high risk of bleeding, and that the surgery, which was supposed to happen on Monday or Tuesday, as to be delayed until my INR level is back within normal range.  I'm frustrated by this because I feel like my life is on hold until this stupid surgery is done.  My face hurts, I can't make plans at work or with friends or anything, because I don't know when I'll be going in.  Also, I had keyed myself up for the surgery, and now it's that sort of anticlimactic let-down that happens when you're expecting something that does not actually manifest.  It's a state of anxiety that I'm not entirely thrilled to be experiencing. 

My allies have come through marvelously to help me deal with this, even those that aren't actively playing the game.  People have sent me music, funny stuff, messaged me to tell me they're thinking about me, and -- as evidenced by Lindsay's post before this one -- come up with game-related ways to respond to this giant cluster of a situation.  I deeply appreciate this, and I definitely think that if I weren't operating in the SuperBetter paradigm, I'd be a lot more upset and freaked out right now.  I even managed to NOT cry at the surgeon's office! Whoo hoo!


So, quick request for allies: Something I forgot to ask was for someone to step up once every day/every couple of days to give me achievements based upon my activities.  I'd kind of forgotten about this part of the game, but I reached the SuperBetter section of Jane's book last night and it reminded me of this.  As she describes it, these achievements are important because they create that feeling of fiero, of positivity and success, that helps us heal.  And it means more if someone else gives them to me than if I give them to myself.  So I'll continue to post my daily activities, and if you guys can bestow upon me anything that you guys think is an achievement, that would be awesome. :)

Today's activities:
Work - 2 hours (10 XP)
Doctors appointments - 2.5 hours, plus another 1.5 hours driving all over town to get to them (25XP for appointments, and I gave myself 8XP for the driving, because, seriously, it was like 70 miles just around town)
Blog post (2 XP)
Total: 45 XP

Then I came home and played WoW and watched The Hunt for Red October, wheee. 

Call for allies, points update

I saw Doc again on Monday.  He gave me some new serums to try -- the previous ones, while effective, were burning up my system.  He wants me to try these new ones to defend against the vampire's infection, and to keep my Wolf in check.  I was doing pretty well - until today. Today pain flared up in old wounds, and I'm losing my hard-won balance.  Today, I need help to fight the enemies that surround me.

Calling all allies - Battle underway!

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My infectious disease doc took me off the IV antibiotics and pulled my PICC line on Monday (is this an achievement?) He said after 8 weeks, the drug just starts doing more harm than good, so he switched me to oral antibiotics and is waiting to hear what the surgeon says.  I was doing pretty well, and even people at work were commenting on how I looked better and seemed in better spirits, but today my face swelled up and has been getting increasingly painful.  I plan to call the surgeon tomorrow, but I just feel really discouraged and worried again, and that's why I'm calling on you, my allies, to help me.

I don't really know how - make me laugh, give me little missions to take my mind off of it, or just call/txt/message me to BS. I know you'll come through - you always do, and that's the beauty of this game.  We can put the pain, the worry, the fear in a different context.  I just need a little help doing that. 

For an update of points, here's where I'm at:
Sunday: 35 XP
Monday: 44 XP (work, PICC line out, picking up prescriptions, doctor's appointment, cello practice)
Tuesday: 55 XP (work, site I've been working on for months at work launched [FIERO!], doctor's appointment)
Wednesday: 35 XP (work, doctor's appointment, cello lesson)

I've had a doctor's appointment every day this week, and as a result, I've not been doing much in the evenings besides resting and playing cello and WoW.  I'm not sure if resting earns me points, haha.

They had to draw 7 vials of blood today, and without the PICC, that was a long and somewhat painful endeavor.  This was for an immunology panel to try to see why I have no immune response to anything.

The points scale can be found in the comments in the previous post.

Oh, and as a random update - I changed the settings so all the contributors should be notified when there are new comments as well as new posts.  Let me know if you find this really annoying.