Just about 10 years and all is well!

Wow, hard to believe it's been almost TEN years since I had surgery to remove a pleomorphic adenoma from my right parotid gland. I would go through the surgery again in a heartbeat, as I believe it was a total success. I have no pains, tingling, or any long-term problems. 

The scar is ever-so-faint in front of, and down below, my right ear. If I remember to have someone photograph it this week, I'll come back and post a picture. But truly it is unremarkable. And I can honestly say no one has ever stared at it or asked questions, that's how hard it is to really see. Which is amazing given the size of the incisions they had to make in order to peel away to reach the parotid gland and tumor.

I don't have anything else much exciting to share on here, as life has been perfectly normal. Busy with our childrens' sports and activities, but it's a good busy. They are 15 and 13, which means we only have a few years left with them in the house so we are trying to savor every moment with them. Whether it's cheering them on at baseball, soccer, or track, or just running them around for high school and junior high activities, we really love every exhausting second of it. 

As I write this post, we are getting ready to head out for the semifinals of the 2021 12U PA South East Cal Ripken State Tournament. Our son's team will be playing and my husband is one of the coaches, so please wish us luck!

Hard to believe it's been 8 years

It's been 8 years since I had the surgery to remove the benign pleomorphic adenoma that was growing on my right parotid gland in my jaw. 8 years. And as I look back on this blog, I am so happy I documented my recovery to go back and remember what I went through, and to help others who may be recently diagnosed, contemplating surgery, or recovering from undergoing surgery.

8 years. And I would do it all over again if I found out I had another pleomorphic adenoma growing in my face or neck.

I honestly haven't given any thought to my jaw/neck or the surgery in a few years. I can barely see the scars - Dr. Ara Chalian did an amazing job - and I don't have any pains, tingling, or other lingering issues.

Now, I have to admit, I don't eat sour candies or food because I know that may cause a tingling in the right side of my face as it stimulates the area of the surgery. But I certainly don't miss it or think twice about it.

The area is no longer prone to pain during cold weather, as it was the first few years after surgery. And I can wear earmuffs, headphones, etc with no problems whatsoever.

If you're contemplating surgery, seek multiple opinions and talk to several surgeons. Don't rush the decision. But also don't procrastinate and risk it developing into something else or causing problems in your body. 

That's all the update I have for you. Just wanted to provide something since I just realized it will be 8 years this coming week, and I haven't updated this website in a few years.

Almost Four Years Out

In a few weeks it will be four years since I underwent parotid surgery to remove a pleomorphic adenoma. Never in my wildest dreams would I think this little blog would attract so many folks from all over the world. As I type this, my stat counter told me there were over 2,000 readers last month who stumbled upon this site, one way or another. And over the past 4 years, over 29.000 people have visited.

These stats make me pretty darn happy I created this site. And not because I see how many people this tumor affects, but because I realize how "not-alone" I really was, at a time when I felt completely abandoned in the world. When I first started writing, I came up with 3 reasons I was creating this site. Let's look back on them....

1. to have a place where I can track my progress. Yes, this has been a wonderful way for me to remember what I went through, see how far I've come, and to refer back when friends ask me questions about the surgery and recovery.
2. to share my recovery with my family and friends. Well, yes, that part is done and over with. Because I no longer have the tumor in my body, and it has not reappeared over the past 4 years, I don't believe any of my friends or family ever have a reason to come out to this site.
3. to help those who may be going through the same sort of health issue. This is where I feel the most proud of tracking my journey. I've had many readers reach out to me with questions and have asked for guidance while they are going through the same type of surgery. 

I've also heard amazing success stories from some of you. Your stories are what make this blog special. Your stories provide additional comfort to the thousands of you who are searching for answers on pleomorphic adenomas or may be preparing for an upcoming surgery to remove your parotid gland and tumors.

If any of you had a positive experience and would like to add YOUR STORY to this site, please reach out to me. I'm more than happy to include your story here, as there are more than enough sad and discouraging stories blasted all over the internet about pleomorphic adenomas and parotid surgeries gone bad. This site is a place to provide a reassuring and positive outlook on a rather frightening time in your lives. 

I hope as you read this you take away 2 things. 1 - if you are dealing with a pleomorphic adenoma or are about to undergo parotid surery, you are not alone. 2 - there are more negative websites and stories posted online than there are stars in the sky. But that doesn't mean there aren't as many positive stories out there. Mine is one of them. And I want you to remember that as you read other blogs and may become worried. 

You're not alone. You're never alone. Ask any and all questions, I'm more than happy to share what I've gone through. 

xoxox,

Kym

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.

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...

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!

:)

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"!

So I have something to share with you...

First things first. I must apologize to my family and friends who are reading this blog and finding out for the first time about what’s going on.

On Tuesday I will undergo surgery to remove a small benign tumor on my right parotid gland. You can read all about what the gland is here. Basically, it's the largest salivary gland in your body, and it's located on your cheek. I've got a pesky little tumor, called a pleomorphic adenoma, that's been hanging out there for who knows how long (we discovered it two years ago), and now's come the time that it must be removed.

I've got all sorts of trepidations, and have weighed the pros and cons to having this surgery ever since it was first diagnosed. Since the tumor has doubled in size over the past two years, the doctor highly recommends surgery at this point. There are many risks involved with the surgery, but there are even more risks if I choose to do nothing. Again, it's benign (non-cancerous) at this point, but it could still cause major problems if left alone.

I plan to track my recovery and feelings from day one of the surgery, and will provide pictures of my progress. My hopes for this blog are tri-fold:

1. to have a place where I can track my progress.
2. to share my recovery with my family and friends.
3. to help those who may be going through the same sort of health issue.

As of today (September 18, 2011), only a few of my friends even know this is going on, and most of my family knows nothing. This is not something that is easy to talk about, and I hate to bring bad news to the table. I've decided to keep this from most of our family (both mine and my husband's) and friends for good reason - if it turned out this was nothing but a normal little nodule and no surgery was required, I didn't want anyone to worry. 

We do plan to tell our family, but only after the surgery. So please do not post any comments on Facebook. Send me an email or post a comment on here. And please forgive me if you are just hearing this for the first time.

Also, I am an emotional wreck right now, and not able to discuss this without falling apart. We have not told the kids yet, but plan to do so tomorrow evening, so please do not bring up this subject if you should see us over the next 36 hours. Tomorrow night I will find out what time the surgery will be on Tuesday, and Tim will update the blog once I'm in recovery. Please keep me in your thoughts and prayers.

***Warning - I'm going to use this as my online journal, and may say things you may not want to hear, or show images you may not want to see. Just prepare yourself. And if you do not like it, by all means, stay away.***