10 days post-op

Finally feeling a bit more like my old self again at this 10 day mark. Yesterday the pain was about a 1, with some random streaks up to about a 3 when I'd move a certain way. I took 1 extra-strength Tylenol when I woke up, along with my bp medicine (Florinef), and 1 at dinner, along with the bp meds again. That's it. Just two pain pills to get through the entire day/night. This morning I haven't taken anything for pain. And my plan is to get through the entire day with nothing, but will most likely take one before bed. And if that works, tomorrow I may be off the pain meds entirely. Seems like I may be getting somewhere....

On Wednesday I removed one of the steri-strips - the horizontal one that ran under my ear. Although it was already beginning to come off on one end, it was pretty snug the rest of the way, so I had to pull it off. Not a good thing - for the incision or the pain involved. And I'm not even sure why I did that, other than I thought it would have come off easier. After that shooting pain, I decided to keep the others on until (1) they fall off on their own, or (2) I go back to the doctor. I've got a follow-up appointment scheduled for this coming Monday, and will have the stitches removed at that time too.

Each day I feel stronger and stronger, and yesterday I managed to walk around a few blocks in our neighborhood with my daughter. It felt great to get outside and enjoy the fresh fall air, but I definitely felt sore when we returned home. However, it wasn't sore in the sense of the surgery, just sore in the sense that I have barely stepped out of the house in the past 10 days. My body ached, and my back could seriously use an adjustment after all this side sleeping/laying.

Last evening I kicked a ball back and forth with my son for about 20 minutes, and again, it felt great to be outside and playing with my kids again. I couldn't move too fast, but I was able to keep up with him. And by the time we went to bed, I was surprised my body wasn't crippled.

While I am unable to fill the coffeemaker with water, I can now pour my own cup of coffee. I may not be able to lift a pot full of water to the stove, but I can at least pull an empty pot from the cabinets and set it in the sink for Tim to fill. And I cannot lift the wet clothes from the washer to the dryer, but I can empty the dryer and fold the clean laundry. Glad I've got my husband around to help with all of these things - teamwork is a great thing. I'm also very thankful for the quick healing (if you could call this quick), because I miss my old life tremendously.

The problem that I am certain to have for months, if not years, is all the nerve damage in and around the incision. It will most likely forever tingle; not quite numb, but not quite normal. But maybe someday I'll get used to it. And hopefully soon it will heal enough so I can get back to the gym and back into my old routine. Or perhaps it will be time to start a new routine...

Slow and steady wins the race. Or so my brother-in-law reminds me.

1 week post-op

Today marks one week since the tumor was removed, and I am so thankful this week is now behind me. To say it was tough would be an understatement. It was hell for me, and I'm sure those around me felt the same as I laid around and did absolutely nothing but grouch and grumble in pain.

I posted a 1 week photo here. You can see the bruising down my neck still.


Pain Management:

• I'm currently taking 1 extra strength Tylenol every 4-5 hours during the day, and 2 at night before I go to sleep. 
• I also take 1 4mg Zofran every 8 hours to help with the nausea I'm still experiencing.
• And I am back on my blood pressure medicine, so I take 0.1mg Florinef 2x/day. Once this kicks back in, I'm hoping the nausea and dizziness goes away. I'm thinking once the heavier drugs were out of my system, my super low blood pressure (90/60) was keeping this nauseous feeling around.

 Pain:

• The lower part of my right ear is still numb, and it tingles in pain if I roll onto it or lean into it.
• My neck is still tight, bruised, and sadly I look like a beaten housewife.
• Most of the right side of my face hurts to the touch, and there's a spot near my right eyebrow that sends shooting pain when touched. I notice this mostly when I'm washing my face, or standing in the shower - the water falling on it really causes me to wince.
• The itching around the incision isn't as bad as it was the other day. However, the steri-strips are still intact, and are starting to curl. When I gently pulled on one, it hurt like a you-know-what, so on they remain, disgusting as all get out.
• My jaw still hurts, and the pain radiates across my entire jaw now, but mostly when I am resting on my side. I've been trying to sleep on my back more, but the snoring will likely drive Tim to the couch.
• I started using my Sonicare toothbrush two nights ago, as I was too lazy to go back downstairs to get the regular one. The pain is ever-so-light, so I bear with it.
• I will surely need to visit the chiropractor in a few weeks, as all this side-laying has done a number on my back.

Life:

• I slept in my own bed last night, and it felt great.
• I'm eating semi-soft foods now, and I've never craved buffalo chicken dip so badly. My diet consists of mainly soft pasta, oatmeal, breakfast bars, goldfish and yogurt. But unfortunately that doesn't cut it for the rest of my family, so they've had to fend for themselves now that all the generous food offers have been gobbled up.
• I am unable to turn my neck to the right very much, but am able to twist a little more to the left (almost to my shoulder). And I can ever-so-slightly nod my head up and down. The muscles are all still tight, but I can feel them stretching more each day.

Little by little... step by step... I will get back to my old self!

On the mend

After a 2 hour nap in my own bed yesterday, I realized I needed to return to my regular sleeping arrangements. I used I think 8 pillows to prop myself up, and surround myself so I wouldn't roll over, but I felt good after that nap.

I had a mean craving for chicken marsala for dinner, but had zero energy to whip up my usual version. So I just dumped some marsala wine in a frying pan, added a well-pounded chicken breast (thank you Tim), and let it simmer for about an hour. It cooked perfectly, and pretty much fell apart in my mouth. My super-sweet 94-year old grandmother sent home dumplins for me (my parents took Kenslee down to visit with her for the afternoon), so I added them in with the chicken - and voila - delicious dinner if I do say so myself. I also realized the nice, ripe tomatoes on the counter hadn't been eaten yet, so I chopped up a few of them, sent Colin out to pick fresh basil, and mixed up a bruschetta topping. This too was delicious, except I hadn't planned for how awful it would hurt to fully open my mouth to eat it on the bread. In the end, I went to bed in my own snuggly bed, in dire pain, but with a satisfied tummy.

But it's certainly not all roses

I have no idea where the past 3 days have gone. But we are so thankful for our family, who kept the kids for pretty much the entire time.

Saturday was touch and go, as I cut out the Tylenol #3, and tried to manage the pain with regular over-the-counter meds. The nausea hit it's peak Saturday morning, as I had been throwing up every few hours for almost 36 hours. That, along with the constipation, is what led to the breakup. I did everything I could to avoid going back to a hospital, even though it probably would have been a safer bet.

However, the pain levels have been between a 4 and 5. And it took 6 Colase and 2 Dulcolax pills to finally go to the bathroom this morning, after 7 days of nothing. I'm still very nauseous, but seem to be able to keep down a few small bites at a time.

There is a lump near the incision, which seems to be a giant pocket of fluids. It's about an inch long, by half an inch wide, and it's incredibly painful. I'm waiting for a call back from my doctor as to what, if anything, I should do about it.

The entire right side of my face and neck are sore, and the pain now radiates through my jaw to the left side. I think this is most likely due to my sleeping/laying/resting on my left side 24 hours/day. I'm still in the recliner, but am dying to get back to my snuggly bed.

Relief

Finally.

Breaking up

That's it. I've had enough of the vomiting and nausea. I'm done with my Tylenol #3.

Honestly I think it caused more pain than it was worth. I took the last pill this morning at 8:30am, and have been dealing with a level 2 pain on regular Tylenol. So of that's as bad as it gets on the regular stuff, I'm okay with it. I'm done with you codeine.

I wish it was that easy to stop the nausea and constipation though. By noon I couldn't see straight, or keep anything down, so I called the resident ENT. He wanted me to come back to the hospital for an IV of anti-nausea medicine and fluids. I really didn't want to go sit in an ER, not to mention make the drive back to Philly feeling like this, so he agreed to trying Zofran first. It's 4mg and dissolves in my mouth, so I don't have to worry about keeping anything down. I took it at 1:30pm, and while I don't feel any better, I was able to eat some plain pasta and 4 breaded mushrooms. Don't ask. I'm hoping those mushrooms don't come back to haunt me. But they were darn good going down.

My next dose of Zofran will be at 9:30pm, so by then we will decide if we head to the hospital, or continue to tough it out here. If I don't puke before then, I will think this may be the turn for the better.

Four

Four pounds.

That's the amount of weight I lost yesterday in 12 hours, during which I experienced the most God-awful, prune juice induced vomiting session.

I kid you not. Four pounds of fluid.

And just so we're clear, there's been no other "movement" going on. Just vomiting. Lots of it.

I'll skip the prune juice

Where did this day go? I slept through most of it, although I truly thought by now I'd be on the up. Boy was I wrong.

Taking Colase 2x/day (started yesterday), but still nothing, so I sent Tim out for some prune juice. I remember giving it to Colin when he was a baby, and it worked like magic, in as little as 30 minutes. But apparently it doesn't have the same effect on my body, as I almost immediately spent the next 20 minutes throwing up. I'm still nautious hours later. Not fun.

A little bit of this... and a little bit of that...

There's so much bouncing around in this crazy head of mine, so bear with me while I try to get it all out. Here's what's happening on day 3 post-surgery:

Pain Management:

• First and foremost, stay on top of the pain meds. I suck at this, and I'm not sure why it's been so difficult. Take one pill (Tylenol with Codeine) every four hours. Plain and simple, and I've got nothing but time to sit around and watch the clock for when I should be popping the next pill. Yet, somehow six hours will pass before I realize it, and the pain quickly creeps back up from a 1 to a 4. Get it straight, Kym.

 Pain:

• The lower part of my right ear is numb. Like I can feel a tingle when I touch it with my finger, but if I squeeze it, it doesn't hurt. And the area around the entire incision is pretty numb too. 
• My neck is mostly tight, bruised, and feeling like someone literally rung their fingers around it. 
• It's also starting to itch around the incision, which I guess is a normal part of the healing process, as the skin begins to come back together and form a scab.
• Occasionally I notice my jaw hurts, but I think I must clench my teeth when I'm sleeping. The pain goes away once I move my jaw around a little bit. 
• I haven't been able to use my Sonicare toothbrush, as the pressure really hurts my teeth. So it's back to the manual way of brushing for now.
• Oh, and one bit of info that is definitely way beyond tmi (but I warned you from the beginning)... the constipation from the codeine is getting to be a little unbearable. I've taken a few stool softeners, but there's not much movement going on. 72+ hours is a long time for things to stay bottled up inside.

Life:

• I was finally able to wash my hair in the shower last night, but it was a little tough to scrub near the incision. Once again I am thankful my husband is standing by our vows to honor "in sickness and in health", as he had to jump in the shower with me and help wash and rinse my hair. Guess it couldn't be as bad as helping with the bed pan though, huh? He's a trooper, and is ready and willing to help with whatever he can. And boy did it feel good to really wash my hair, and scrub out all of the blood and other 'grossness' that had accumulated in there over the past few days.
• My parents have been angels, and I'm so thankful they now live here in PA to help out as much as they have. My mom has come over each morning to get Kenslee out the door onto the school bus, then she takes Colin over to her house for the morning. She comes back at 12:20pm to get Kenslee off the bus, and they go back to her house for lunch. Then both my parents bring the kids back over at dinner time, and help get things cleaned up around the house. Homework, dishes, laundry, clean-up. You name it, Mom does it. Seriously, what would I do without her?
• I'm 90% dependent on others, and that depresses me. I'm not able to lift much, or bend over to pick up things, so I feel completely helpless. I can't even lift my plates (why did I choose the ridiculously heavy Pfaltzgraff set?), carry things upstairs, and pick up stuff from the ground. It even hurts when I try to drink from one of our tall glasses, as they seem to be awfully heavy when full of water. So I've resorted to the cheap-o plastic cups for now.

All in due time... all in due time.... 

Some pictures to track my progress

I created a separate page to track pictures of my recovery and healing.

This way, if you can't handle the truth, you can continue to read this blog and just paint pretty pictures in your head of what my stitches and scar will look like.

Or, if you're like me and really into all things "medical", you can go here to view the photos, or click "Parotid surgery pictures" above.

But I must warn you first, there will be pictures of the actual tumor on there. Shortly... once Tim gets back from his run and I can download them from his iPod. Yes, my awesome doctor gave in to my request to take photos of my lovely pleomorphic adenoma so I could see first-hand what this damn tumor really looks like. Hopefully it's the first and last time I ever have to come across one of these things. And hopefully for you all, you never have the displeasure of meeting one either.

Eee youch!

I think I overdid it yesterday. Moved around too much. Talked too much. Ate too much. Anyone who knows me is not surprised by any of this. But now I'm paying the price. I'm in pain. Like maybe a 5 or 6 pain. Ugh.

I don't know what I was thinking by not staying on schedule with the pain meds. Ordinarily I'm all for drugs, but these tend to make me go in and out of consciousness. I mean, that's a good thing for pain management after surgery, but I really wanted to be awake to sit with my kids for a bit this morning. My last Tylenol with codeine was around 2am, but I woke up around 7 with a terrible headache, and massive pain in my neck and jaw. I took a regular Tylenol, but after half an hour, I still felt every bit of pain. So, out came the heavier drugs again, but of course I'm too weak to open the dang bottle. Thank goodness Tim is working from home for a few days.

My mom stopped by this morning and took Colin over to her place for the day. And she'll be back around lunch time to get Kenslee from the bus stop. This way I can just veg out and nap whenever I need. And watch lots and lots of TV. By the way, am I the only one who has no clue who Taylor Lautner is?

Settling in

Made it back home this afternoon before rush hour, and I think I may have overdone it with walking around the house and talking with the kids. My jaw, neck and side of my face hurt, but I'm trying not to take too many drugs. Tim picked the kids up from school, and they helped make pancakes for dinner. As usual, I am starving, so it was nice to have something soft.

I jumped in the shower tonight and was able to wash off pretty good, but I can't seem to lift my right arm very well without much pain, so I couldn't wash my hair. There's still blood in my hair a bit, and I'm fairly certain there's some other gross things in there, but for now it will have to stay pulled back in a pony tail.I had heard others couldn't shower for up to 3 days after this surgery, but my doctor gave me the green light on everything except driving and working out. He said the more I do, the better and quicker I will recover. So we will see how this goes. I was able to shave my legs though, so at least part of me can feel sexy :) Oh, and my La-z-boy rocker is going to be my bed for the next few days. I need to stay inclined to keep the pressure from building up in my head.

In tracking my recovery for others, I wanted to add a note about the pain. In the hospital the pain was roughly a 1, on a scale of 1 to 10...10 being the worst pain ever. It only got up to about a 4 at one point, but that was after I threw up for several hours, and my whole body ached. I've been taking Tylenol with codeine (Tylenol #3) since early this morning, and just taking one pill every few hours. I definitely still feel pain in my neck and cheek, but I think it's still only about a 1 or 2. My ear, cheek and neck feel numb, but I can feel my finger when I press on them. I'm told this is all normal, but the numbness will probably never go away.

That being said, this pessimistic girl is trying something new for a change... I'm going to try to be optimistic, and pray for a full recovery. Tim's Aunt Sharon sent over a msg (I think it went to Tim's parents, who forwarded it over) that really helped me cope... This message came the day before the surgery, when I was at my highest level of anxiety ever, and once I read it, it put my mind at ease.

"If I can give you any comfort at all, I can tell you that she is in the BEST possible hands you could ever be for this surgery.  Dr. Chalian has taught so many younger physicians (one of ours who does this surgery on children) and I have a very good friend who’s uncle had the same exact surgery Kym is having tomorrow by the same surgeon and he is perfectly fine.  No paralysis.  There will be  weakness in the beginning.

Also, he uses something called a “nerve monitoring tool” that starts to beep if he gets too close to the nerve.  That being said, cutting the nerve will be the very last resort.  Other ENT surgeons described him as a “butterfly” when he’s operating.  Gets around stuff that other docs could never do."

A butterfly, one of my favorite animals.

And now it's time for Modern Family, my favorite show on TV! Tim tells me "this is true love", as we have to watch it 'live' since the family room TV doesn't have a dvr. Time for some laughter to wash away the pain...

I'm coming home, coming home...

I've been given the green light, and the IV was just pulled. Time to go home and get some rest while the kids are in school.

Thank you for all the emails, comments, and FB messages, your kind words of encouragement mean the world to me.

Oh what a night

Last night sucked. Like really really sucked. I was woken every two hours for blood pressure and temps, but then I'd lay awake with nausea and pain. They had given me Zofran intravenously, but it didn't help. By 2am they gave me some other stronger meds for sickness. And morphine dripped most of the night, but that may have been making me worse. By 4am I cut out the drugs. 7am I took a Tylenol with codeine, and will take the 2nd one in a few minutes, once I make sure this stays down.

Another awful thing was having to use a bed pan...gross. And my poor husband stood by my side the entire time. It overflowed onto the bed, which resulted in needing all the sheets changed, my lovely gown changed, etc. And that, my friends, is what started the vomiting. After being bumped and jostled for those few minutes, my body couldn't calm down. I just kept throwing up liquids. within a few hours, everything seemed to settle, but I still feel slightly dizzy.

On a positive note, I should be able to come home later this afternoon. They want to make sure I can eat and keep things down, and be able to move around safely by myself. Just ate some vanilla pudding and it seemed to go down okay. I tried a saltine cracker, but it hurts to chew.

One thing that surprises me is the amount of male nurses here. Both of my main nurses are male, and while very nice and helpful, it makes for an uncomfortable potty situation. Speaking of which, it's amazing how much fluid is coming through this IV bc I have to use the restroom every 2 hours. And with my low blood pressure issues, I have to start sitting up about 15 minutes before I can get out of bed.

Side note- My room overlooks the Football stadium (UofPenn??), and I can see the Philly skyline through some morning fog.

Ps- thank you all for the positive comments, thoughts and prayers. While I don't have the strength to reply to all of them personally right now, know that your words bring a smile to my face. And for Marcus- that smiling picture was taken for you.., thank you for your optimism :)

**edited by Tim - It is a pretty cool view:

:)

One of Kym's big fears was that a nerve would get clipped and she wouldn't be able to smile anymore.

Still looks perfect to me. This was taken as her nausea was about to kick into full gear. She's been sick from the anesthesia for most of the night. They gave her some meds and she was passing out when I left to come home with the kids.  Hopefully she sleeps tonight.

Thanks to all for the well wishes.

Out of surgery

Kym is out of surgery after 3 hours. I talked to the dr. on the phone. He got pulled into something but wanted me to know she was doing well. No drain needed. He will come down in a little while to "draw me some pictures". But he said it all went perfectly. A waiting room nurse (dr.?) who goes between operating rooms and patient families said she is awake and talking... A bit sore, but in his words you can barely tell she had surgery.

In the OR

If we're using this like twitter today I guess I'll first say I'm writing this while on the toilet. (just kidding). Kym got taken into the OR at 11:15 after a painful 15 minutes of the anestegologist trying to find a vein for her IV. Kym's parents and my parents are here with me in the waiting room. Kym was nervous, but in fairly good spirits. She took my iPod touch and convinced the doctor to take a picture of the tumor. I'm sure you're all dying to see that...

It's go time

Made it in

For those checking for updates, I'll use this like Twitter for today.... We made it to HUP about 10 minutes ago. Tim went to get breakfast (lucky man), while I sit in Admissions, waiting to be called. For the record, I AM STARVING.

Today's the day

Time to hit the road and get through morning rush hour on 76. Tim will provide an update later as he hears from the doctor. Keep those prayers coming please, but know that "every little thing gonna be all right"!

Bags are packed, but this ain't no vacation

An automated call came through about an hour ago, with information on my arrival time, what to bring, and where to go tomorrow morning. An automated call. Seriously? I'm about to have my face and neck sliced open, my face peeled back to reveal most of my cheek, chin and neck, and they can't have an actual person call me to provide this information in a more comforting sort of way?

But since that's the way they handle things, I sat and listened to the several minutes of automated  information. "Arrive at 8:45am, wear comfortable and loose clothing, pack an overnight bag, do not bring anything valuable, do not eat or drink after midnight", etc, etc. This reminds me - I do not have a bag packed. Packing an overnight bag makes me think of back when I was about to deliver a baby. However, I'm fairly certain it was easier to recover from delivering a 7 pound baby (with no drugs, mind you), than it will be to recover from removing a probably 1 oz tumor. Crazy.

I was curious what time the actual surgery would begin, so I had to hang up and call back to the main hospital. It's set for 10:15am, but of course, anything can happen to delay it. And the surgery will take 3-4 hours, with recovery another hour or more, so stay tuned for an update mid-late afternoon tomorrow.

Until then, I'll be up until 11:59pm stuffing my face! Not really. But doesn't that sound like fun?

As a side note - the new steroid medication (to help control the black-outs) I've been on for just one week, has caused me to gain five pounds already. I kid you not. Five freaking pounds in one week. So, perhaps this whole surgery couldn't have come at a better time... I'll be on a liquid diet for a few days, so maybe I can drop this extra baggage. Although, it's probably better I retain this water weight because I need to increase my blood volume. And today I completed my first workout in over two years without experiencing a black-out spell, so apparently this medicine (and the extra weight) is working. Yay me!

And another side note, I keep singing Bob Marley's "Three Little Birds" out loud everywhere I go. People must think I'm crazy, but I've got to keep reminding myself "every little thing gonna be all right".

What scares me the most

Besides telling the kids (which is going to be Tim's job tomorrow night), what scares me the most is something I hadn't even thought about. For the past two years, I've put off thoughts of surgery because I was terrified of the scars on my face and neck. Terrified. Like as if I was a magazine model and my life and career depended on my good looks. But hello, it's me we're talking about. I've always got bruises and bumps all over my body, chew the hell out of my nails, and wear sweats like it's my uniform. I'm not sure why I worried about a 4-6 inch scar on my face.

So while I focused all my anxiety on this superficial scar, I never once thought about all the real risks involved. And no, I'm not talking death here. I'm talking the very real risks, the almost certain complications, and the "it happens to everyone, but it's not enough to bother them" things. At my pre-op appointment my surgeon told me that every single patient loses feeling in their ear and side of their neck. Every.Single.One. They experience "complete numbness" is what I was told, because there is one nerve that must be cut. Which completely freaks me out, because I can't stand when my foot falls asleep, so I can't imagine what this will feel like 24/7 on my head and neck. Some people say it feels like a lead weight hanging from your ear. Others say there is internal itching, but all the scratching in the world won't make it go away. And that's just what happens to everyone.

Many people, if not all, experience facial paralysis, either temporary or permanent. But you do not know which you'll have until months or years later when either you regain movement, or you do not. This, my friends, is my biggest fear. What if the right side of my face no longer holds in place like my left? What if I can never blink my eye again? Wink at my husband? Chew my food? Smile? All these little movements are controlled by your facial nerve. The exact nerve that this damn tumor is wrapped around, as it's made the deep lobe of my parotid gland its home.

The surgeon takes every precaution to identify and preserve each of the nerves, however that does not guarantee that they won't be damaged as he cuts away the tumor. And even if a nerve gets gently moved or clipped, it may lose its ability to function for months or years. Or worse, permanently.

And yes, I'm a total pessimist, so I fear the worst. But that just means I'll be pleasantly surprised to come out grinning from ear to ear when I'm released from the hospital Wednesday, right? In all seriousness, I'm scared shitless. I'm scared that I'll look like a freak to my children; that I won't be attractive to my husband; that I'll be the one everyone looks at out of the corner of their eye and thinks "what happened to her?". I get that these fears are silly to most people, but in my mind they are so very real.

Oh, and one other crappy outcome that happens to everyone...... it will always sound like I'm listening through a tunnel in my right ear. Great, just great. But again, "this doesn't seem to bother the people who've been through this procedure", is what my doctor pointed out.

Like my dear friend Becky always says, "what's the point in worrying when you can't do anything about it" (or something like that). That's right, at this point it's out of my hands, and all we can do is pray. The surgery is scheduled for Tuesday (they will call with the time tomorrow night), and they tell me I will only spend one night in the hospital, and can come home Wednesday morning. Let's just pray I can be one positive example of the surgery, and can have a happy story to share of my recovery.