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.