3 months post-op

This poor blog has been so neglected, but I'm happy to report that at 3 months post-op, things are going well. The scar is still very noticeable, but I've grown more comfortable wearing my hair back in a ponytail. I've resumed my normal everyday life, and am back to working out on a regular schedule. I am able to turn my neck both ways pretty well, but it's still a little tight when I stretch it to the left.

My sleeping is getting much better, but it's still uncomfortable, bordering painful, to sleep on my right side. I can sometimes prop my arm under a pillow, then lean the front of my head, back to my ear, on a pillow... Leaving my ear and neck sort of floating. It's certainly not the most comfortable position, but sometimes I just need to get off my left side.

That darned stitch finally got absorbed back into my skin at about 2 months post-op. It definitely drove me nuts, so I'm glad it's not protruding anymore.

As for the rest of my life, I'm back to everything I used to do - working out, riding a bike, lifting 12 pound weights at the gym, and most importantly I am able to enjoy great big bear hugs from my children. My little guy still picks up my hair to see which side of my neck is the "cut" one, and then leans into the other side when he hugs me.

Going forward I hope to update this blog every month or so with new pictures of the healing process. I'll be back to the doctor in February and will have another MRI at that time too.

1 month post-op

It's been four weeks and a day since my parotid tumor (a pleomorphic adenoma) was removed. It sounds like a broken record when I talk about the healing process - still painful to the touch around my face and neck, bottom half of ear is still completely numb, the stitch is still sticking out at the top of the incision, and there's still a lump (about 1 inch by 1/2 inch) where the actual tumor was. See, nothing's really changed.

And yes, I'm still impatient, in case you were wondering. I still expect to wake up one day and find I've bounced back to normal. And when I do wake up and realize my neck still doesn't stretch the way I want it to, yes, I get upset.

It's hard and depressing, yet it is crazy to even feel this after just one month of surgery. Even sillier to admit, but since I'm being honest about the recovery, I feel I owe you the truth. It's definitely hard for me to accept something's changed, and that I have to slow down or just be patient while it heals. While I heal.

But in reality, I have nothing to be upset about - it's not cancer and I'm alive and well, surrounded by a super supportive group of friends and loved ones, and I'm here with my family. And speaking of family, I have two cutie pies waiting for me to read a bedtime story, so I'm going to scoot on upstairs.

3 weeks post-op

I'm 2 days late in writing this 3 week update, but I guess it's better late than never, right? This past week has definitely felt the longest, but I'm glad it's now behind me. And I suppose it can only go up from here.

I'll start off with the good - I have run two days in a row now, just about a mile each day. Today my kids rode their bikes with me, and at times I was able to stay ahead of my little guy, but never once was I able to pass my daughter. That's okay though, I'm happy just knowing I made it without stopping or slowing down.

I've been taking a Tylenol or Advil (or two) throughout the days, and usually right before bed, just to help with some of the pain. It's mostly self-induced though, as I've been pushing myself to go beyond what I did the previous day. The pain is mostly a sore neck from stretching or doing too much lifting (laundry, games with kids, etc), and I've been waking up frequently at night with pains down the side of my face.

Several times a day I sit and stretch my neck - up and down, side to side, then tilted both ways. I can turn pretty good to the left, but it's still tight. And it's definitely painful when I try to turn to the right. Not as tight, since I'm not stretching the muscles that were cut, but I think the pain is what stops me from turning it too much. While it's getting better, and yes, I do see some progress, it's not as much as I'd like to see at this point. You know me and patience.

The incision itself seems to be healing nicely; you can't even notice the part along the front of my ear. However, there's still a lump at the base of my ear, about an inch by a half inch, where the tumor was located. I'm not sure if it's still just swelling from where he removed the tumor and part of the parotid gland, or if it's a sac of salivary fluid that's drained from the opened gland. Or it could very well be a bit of both. It's pretty hard, and incredibly painful to the touch.

My upper neck is still very sore, as is my pretty much the entire right half of my jaw. It's also still swollen, which I can see, but most people say they can't even notice. Either they're just trying to be nice, or I can hide it pretty good when I wear my hair down. Again, those who know me, know I'm a pony tail type of gal, so it's hard to keep it covered. I'll try to remember to take a regular photograph from the front tomorrow, and maybe you can give me your thoughts.

Also, that darn "numbness, but not quite numbness" is still going on with the bottom half of my right ear. I guess maybe a better comparison would be to say it feels like it fell asleep. Quite annoying though, because no matter how much it itches (and it does, for hours on end sometimes), I itch it, yet I can't even feel my fingers scratching or pinching it. Many people say they grow used to this feeling, but it's driving me nuts. Every time I roll over onto a pillow, or turn my head while sitting on the couch, I wonder how one could ever learn to live with this.

Oh, and let's not forget about that stinkin' stitch that's still sticking out from the top of the incision. Speaking of driving me nuts.... it gets caught on the washcloth every time I wash my face. Annoying. Definitely annoying. I'm accepting bets as to when it may ever actually dissolve or fall off.

Aside from all of this, I've got to add a personal note here. Our family and friends have been so generous with meals, helping with the kids, and lots and lots of support, and it really means the world to us to have each of you in our lives. Even our friends across the miles (Melissa!) - I could not get through each day without your positive outlook reminding me that it will get better. Thank you.

Thank you to each and every one of you, for all that you've done. And especially thank you for all of the prayers and good thoughts. We've got the most amazing support system, and are so blessed to have you in our lives.

One step closer

I just got back from a 1 mile jog. Piece of cake for many, but a huge accomplishment for me. I've walked a mile since the surgery, but had never attempted to run. Until today. The weather is crappy, I've been in a blah mood lately, and I needed to just get out. So I put on my running shoes, and out I went.

Oh how I wish I could say it felt great. But truly, my ear ached, my neck hurt with every step, and I know I'll be whining tomorrow... Even more than usual. I have been trying to stretch my neck during the days, but nothing quite stretched it like each pounding stride, my shoulder bouncing up and down, really giving those muscles a good pull. There wasn't anything enjoyable about it, except for the fact that I overcame my fear of pain and kept at it. I refused to listen to my body telling me to "slow down and walk". And for that, I feel good.

BTW- I still owe you a 3-week update. Tonight, I promise.

Wishing on a star

***Note - you are about to read a miserable update - so continue at your own pace***

Some days I feel like crap. Some days I would rather not get out of bed. Some days I just want to scream. And some days I just want to cry.

Today is one of those days where I'd rather just curl up in bed and sob myself to sleep. Really, it would be ridiculously selfish to do such a thing, because I have so much to be happy for in my life right now. The surgery is past me, I do not have any major complications, it's not cancer, and most importantly of all - I'M ALIVE!

So why am I so sad? I can't exactly explain it, other than I miss my 'old' life.

I miss being able to sleep any which way I want at night, tossing and turning in my sleep, without being woken up by shooting pains when the right side of my face or neck hits the sheets or pillows.

I miss rolling over in bed to snuggle with my husband.

I miss how great I felt after a good workout at the gym.

I miss going for a family bike ride with my husband and kids.

I miss snuggling with my children. You know, the "right before bed" kind of snuggle, when they are really tired, and curl right up in your arms... you can run your fingers through their hair and across their face...and they wrap their little arms around your neck and just hold tight.

I know that healing takes time. I know it won't happen overnight, although I desperately pray and wish for it. I know I can hurt myself by pushing too hard, too fast. I know that it's not quite been three weeks since the surgery. I know slow and steady wins the race. I get all of that.

But, I'm me. And those who know me, know I have zero patience. Zero. Zilch. Nada. I do expect to heal by leaps and bounds so that I can get on with my life. I can't continue to sit back and watch everyone else have fun, while I have to stay behind. So when I do things that I probably shouldn't (like go to the gym or do chores around the house), please don't judge me or tell me I should be resting. Please just understand that I need to get out, and need to feel like my life is on its way to feeling 'normal' again.

For now, I am miserable and it sucks.

Odd little spasms

It's 12:15am amd I'm lying in bed, wide awake. Mind you, I've been asleep since about 9 when the kids went to bed, so it's a little bothersome to be awake right now. And let's not forget that the Phillies just ended their season, so I didn't wake up to a happy-to-see-me husband. So here's the deal...

As I'm lying here, my right cheek is going into spasms. Like little muscle or nerve spasms. I had read this happens often over the next six months, as the nerves begin healing and try to connect. I can only hope the nerve going to my ear, the one that had to be severed, fuses back together correctly. For some, it doesn't go back together. For others it fuses with a nearby sweat gland, and you sweat while chewing, causing a few drops of sweat to pour out the side of your cheek or neck; a condition known as Frey's Syndrome. And for perhaps a very lucky few, the nerve regenerates perfectly (although I truly think these people may not have had the entire nerve severed during surgery).

Who knows what my future holds. But for now, I lay here in pain while my cheek twitches away. I sure hope the nerves decide to take a break and get some rest for a few hours.

Interesting findings at the gym

Today marked another big hurdle in my race to recovery - my first trip to the gym. Now, I knew going into this workout that it would be incredibly different from all previous workouts. I knew I wouldn't be lifting any weights, or pushing the elliptical machine with my arms. No running, swimming, or push-ups. I was fine with all that. I just went for a little cardio workout, and wanted to get back to "clocking" my workouts for my insurance credit.

As I walked in the door, I quickly scanned the cardio machines to see what would work best. I immediately ruled out the bikes, treadmills and ellipticals. The only other options were the steppers and the AMT machines (Precor's Adaptive Motion Trainer). I've always had a fear of slipping on the stepper and tumbling down the 5 or 6 stairs in front of an entire gym, so today was not the day to give that one a whirl. I walked over to my favorite machine - the AMT - and signed up for half an hour. Figured I didn't want to overdo it on my first day back.

Two things I didn't realize:

1. how difficult it would be to wear earplugs (I like to watch TV while I work out... it kind of keeps me going so I forget about any exhaustion and/or pain my body is experiencing). Awkward is more like it. Not really painful in my ear, but certainly not comfortable. Awkward. 
2. my regular water bottle just won't cut it for the time being. The first time I sipped from it - ouch! This sounds awful to say, but for the surgery they had to cut into the muscles of my cheek to remove the tumor, so it's still painful whenever I use those muscles. Mostly I notice shooting pains when I chew, or try to take a big bite of a sandwich. Today I learned that I also cannot make the water come out of the water bottle without causing pain to myself. The only way around it was to take lots of mini sips to get the water. Not good when working out and one is dehydrated. Also not good when one forgets to take their blood pressure medicine in the morning, and desperately needs fluids to avoid passing out.

All in all I enjoyed a successful first day back in the gym. I did get dizzy, but it was all self-induced. So when I was done with my workout, I just stopped to sit on a bench for a few minutes. It also helped that I ran into one of my girlfriends, so we sat for a while and chatted while I waited for my blood pressure to get back to normal.

Anyone for a drive?

Today I woke and up finally felt well enough to drive. First stop - Target! Followed by Giant (since it's next door to Target), then back home to get Kenslee for lunch. After lunch we headed out to the library, then walked over to the playground so the kids could have some fun. Next up - a short hike down and around the woods.

Whew, I forgot how exhausting it is to be an "active" parent! I'm tired of not being able to participate in all of the fun things my children get to do. Glad I'm finally feeling up to some of these activities.

But... when you don't hear from me tomorrow... you'll know why! And you can find me in bed.....

Full disclosure - these trips did not require me to merge into traffic, so I think I made out okay. I mean, there were no accidents, and that's what counts, right?
It's when I finally go back into the office for work when I'll be in trouble. I will have to merge into mad rush hour traffic on route 422, and we all know how dangerous that highway is!

Also, my son did all the heavy lifting at the grocery store. He was in the cart, and helped me load and unload all of the groceries. He even carried several heavy milk jugs into the house, and helped me unpack all of the bags. Such a sweet boy.

Back to the grind

I started back to work yesterday, and it felt great! Although, by "back to work" I mean "working from home", and I only lasted five hours. But, regardless of the location, it was nice to get back into more of my old routine. What was once a normal old laptop seemed to be quite a heavy piece of technology yesterday morning when I unzipped my bag and tried to lift it with my right hand. I quickly grabbed a hold with my left hand as well, and proceeded to spend the next two hours trying to connect to the network. After numerous calls to different IT folks, I was finally granted access around 11am. What a waste of a morning!

But this brings up one point I don't think I've mentioned on here yet - how little strength I have in my right arm these days. The surgery was the right side of my face and neck, so it's only normal to expect some pain on the right side of my body. But I truly didn't expect to still be struggling so much two weeks after the surgery. I went to grab a full gallon of milk this morning from the fridge, and without thinking I grabbed it with my right hand. It no sooner slid off the shelf before I realized I was unable to hold it with just one hand. Thankfully my left hand was empty, otherwise there would have been milk all over the floor.

I made it through my second day of work today, and managed to put in 7.5 hours. The weather is beautiful here in Pennsylvania, and I'm hoping to get outside and go for a walk with my kids again tonight. Last night after dinner I walked around the entire neighborhood (about 3/4 of a mile), while the kids rode their bikes. I definitely slowed them down, and they definitely let me know it, but I'm hoping I may be able to pick up the pace some tonight. Perhaps even jog for a few houses or so.

So when I'm whining about the pain tomorrow, you'll know why.

2 weeks post-op

Wow, I'm at the two week mark post-op mark today. And while I'd like to say "I'm back to normal!", that would be far from true. I am working on understanding and accepting what the "new normal" will be, and having a hard time coping with some things I have lost.

you can barely notice the scar
in the front of my ear

Mainly, sleeping on my right side. Oh how I loved to curl up in the fetal position and snuggle with my pillow. Yes, I can still do that on my left side, but my body likes to switch while asleep, and now I find myself waking up in shooting pain whenever I even begin to lean towards the right.

There will always be nerve damage on the right side of my face and neck, always. And while the swelling and bruising is mainly a thing of the past, the tingling and numbness (although "numb" doesn't really describe the feeling) is still very much there. That is frustrating to me, because even after previous surgeries on my body (left knee), I never experienced nerve damage or shooting pains whenever the area was touched.

Great big, giant, arms-outstretched hugs from my kids - that's another of my hardest losses to accept. I loved when they would wrap their little arms around my neck, and hold tight so I could sweep them off their feet and hug them with all my might. Hugs nowadays have turned into little hugs on the left side of my neck and shoulder. It's not a real hug, in any sense of the word, and it breaks my heart.

Both kids have done great remembering which side is my "good side" and which is the one to avoid. Every now and again Colin will come running at me, stop right in front of my face, and peak over both of my shoulders to make sure he's safe, before giving me a little hug. Oh how I long for those great, big, bear hugs!

and hopefully one day you won't be
able to notice the back part either

As for the incision itself, I spoke with the doctors nurse this morning (who spoke with the doctor prior to calling me), and she recommended I snip off whatever I could from the stitch that's sticking out. The doctor said he definitely cut the ends internally yesterday, but that it may just be very tight from my pulling on the remaining piece of stitch, so I should massage around the area for a while. Gentle massage. Well, I did that for about an hour today, and can still feel the little bit of plastic stitch protruding from the top of the incision.

Apparently these stitches dissolve over time, but just how much "time" it takes is beyond me. Could be days, weeks, months or even years. Everyone's body is different. And seeing how well my body adjusted to the medicines, I'm not holding out any positive hope that it can process and destroy this stitch. Not to mention it feels like I gave myself an awful face lift around my ear. I pulled that stitch way too tight last night with the tweezers, and all the massaging in the world this morning didn't manage to loosen it up one bit.

I also found out about the bruised area next to my right eye (see picture at the top). All this time I had been thinking something must have fallen on my face during the surgery, but it turns out he had to make a small incision there for the nerve monitor. It looks like it's all healing fine, but there's still a brownish bruise near my eye, and it's hard for me to apply eye make-up on that eye.

I'm scheduled to go back in four months for another MRI and visit with the doctor. Then four months after that, and four months after that. At that point, if the tumor has not reappeared, I'll be seen on a yearly basis. He feels the chance of recurrence is less than 20%. Unfortunately he was not able to create a positive margin of normal gland all the way around the tumor, as some of it was pressed up against the nerve. Therefor, there's a risk the tumor may have 'feelers' still out there, and could eventually come back to life.

Final diagnosis on the biopsy, which includes the right superficial parotid gland, with inferior deep lobe tumor (measuring 2.6cm by 3.2cm by 1.3cm):

• Pleomorphic adenoma (benign mixed tumor)
• 1.5cm abutting the posterior resection margin, <0.1cm from the superior resection margin, abutting the medial resection margin, and abutting the anterior resection margin.
• Six lymph nodes, no tumor seen.
• The specimen reveals a white-tan, gelatinous, well-circumscribed nodule at the medial aspect of the specimen measuring 1.5cm by 1.0cm by 0.7cm.

closer view of the back - I think it's cut on angles to blend in with the ridges in my skin

All in all, I'm free to do as I wish, except swim for a few weeks. The incision must completely heal before I can go in a pool, or under water, again. And while I've been given the green-light to drive, I have to limit myself. I'm unable to rotate my neck, or make any sudden movements, so I'm going to abstain from driving for a bit longer. I will first venture out on my own somewhere local, but only when I'm 100% comfortable will I bring the kids in the car with me.

As for getting back to the gym... well, as much as I'd love it, I've got to let the incision heal some more. I cannot lift a laundry basket full of laundry, so until that happens I won't be lifting any weights. And since a 6 step jog from the car to the front door yesterday put me in pain, there will be no major cardio workouts just yet.

Slow and steady... slow and steady...

Stitches out...almost

Spent over 3 hours waiting to be seen for my appointment today, so this did not start off on a good note. Got the stitches removed, only to come home tonight and find a piece of stitch, looks like fishing line, sticking out in front of my ear. I actually thought it was a piece of scab, so I wiped it with my finger. But then I realized it was plastic and hard. I got out the tweezers, and hoped it was just a loose string I could easily pull out.

Nope.

Not a chance.

The line is still attached to the base of my ear, on the inside. That "little" pull of the tweezers tightened up everything, and now it hurts like hell.

And that's not even the worst part. The worst is yet to come. I now get to spend all day tomorrow going back down to Philly, sitting in a room waiting to catch the doctor in between surgeries. And then I have to pray he doesn't have to re-open the incision to find the other end of the stitch.

Not a happy camper right now.

And then there was none

The last time I took anything for pain was Friday night. I survived all of yesterday without drugs.

Zero.

Zilch.

Nada.

The pain was mostly around a 1, but went up to a 2 at a few different times during the day.

Once when I was yelling my head off at the kids for riding their bikes into the street (and narrowly getting hit by moving vehicles).

Another time was when I indulged in some of my husband's delicious chili, which I just couldn't eat without salty, crunchy, rice chips.

And one other time was when I brought a bowl of cereal up to bed (I know, bad habit, but it was Cheerios), and I accidentally grabbed one of the tablespoon sized spoons. I hadn't realized it until I was snuggled up in bed, and I was too lazy to walk back downstairs to get a smaller spoon. Opening my mouth that far is still a tad bit painful.

Dwindling down

I managed to survive all day yesterday with no pain pills, but I did take one extra strength Tylenol right before bed, just for fear of waking up in dire pain.

Today's goal - zero pain pills.

Drugs are a mysterious thing. They do wonders to help your body heal, yet they disguise the symptoms in such a way that could easily cause more damage. While the more powerful , prescription pain medication managed to hide the excruciating pain from my surgery, it had awful side effects. And the regular, over-the-counter medicine still allowed me to feel the pain, but had minimal side effects. There's always a catch.

Thankfully I've been able to survive just fine with the regular meds, even though I'd much rather mask any pain and uncomfortableness (is that a word?). You see, I'm a big wuss, and I'm ordinarily quick to run to the medicine closet whenever something bothers me. I've always been a big supporter of the pharmaceutical industry, and yet, for some reason, I've found myself taking a break this week.

This time it's different. I've got to make myself, force myself even, to slow down and allow my body time to heal. I need to be reminded that I just had surgery 11 days ago. I need to feel the pain in my neck, so I don't overexert myself. I need to relax and put my feet up... for a short while. I need to let the muscles recover. And I need to remember that it's okay to ask for help.

Easier said than done, my friends.

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.