My Jaw Resection Journey

So based on the title, you probably assume that this post is going to be about my surgeon, or my oncologist, or my parents… well it’s not. Don’t get me wrong, all of those people, my entire medical team, and my inner circle are the reasons I’ve survived the hell I’ve been through the last 4 years. I am eternally grateful for each of them, but one person changed my entire perspective solely by their response… My best friend.

I assume if you’re reading this that you either know me, or have some connection to osteosarcoma/mandible resection surgery, so I’ll fill you in on a little about me just in case you fall into the latter category. I am an only child. I come from a very small family, like we don’t have to have a “kiddie” table at holidays because we all fit at one table, small. Because of this I’ve always kind of had an extended family made solely of close friends

I’ve chosen, which I frequently refer to as the inner circle. I consider myself very friendly; however I think there is a big difference between being friendly and being friends. It takes a lot for me to let people in. I have a relatively tough exterior, and prefer to put on a good attitude in the morning in the same way that I put on an outfit. This isn’t me being fake; I just don’t think complaining about my struggles or being mad at the world will do me any good. So when I got diagnosed with cancer, I didn’t pray for God to take it away, I prayed for him to give me the strength to get through it with a good attitude, and sometimes that requires effort. Very few people know when I’m struggling with something, but once I vent and convince myself that “if I can’t change it, I need to change the way I think about it”, I usually decide to be okay with it and I move on. I’m incredibly decisive. Once I’ve made a decision, I rarely go back on it. That’s just not my style. Well in 2012, after throwing up every day for 30 weeks, feeling more tired than I ever knew possible, spending an inordinate amount of time in the hospital, having to completely press the pause button on my life, and losing every hair on my body, I swore that if my cancer ever came back that I wouldn’t put myself through chemo hell again. As time passed and I met more Cancer Survivors, most of whom did an average of 9 weeks of chemo, it only reaffirmed my decision. If 30 weeks of one of the strongest chemotherapy treatments on the market didn’t rid my body of cancer, I wasn’t convinced that anything could. In 2014 I had my first recurrence. Following my previous decision, I wouldn’t even entertain the idea of doing chemo, and we removed my entire mandible in attempt to get of the cancer. Well that didn’t work, or maybe it did temporarily, who knows, but either way in 2015 my cancer came back. I knew it before any medical tests confirmed it, honestly I had also been having headaches and thought it had spread to my brain. Come to find out later, it had not, and the stress of the entire situation was just causing high blood pressure that made my head throb in a different place than my usual headaches. For the first time throughout this whole ordeal, I thought it was a possibility that the cancer could kill me. As an only child I had no idea how to tell my parents. I wanted to tell them first but literally couldn’t form the words. Once you say it, it becomes real. I couldn’t do it. So I told my best friend.

Without getting into too much detail about that night, I’ll just say that I hadn’t planned it out. We were walking down the street and I just started hysterically sobbing and blurted it out. Not that that’s ever a good conversation to have to have but this was pretty much the absolute wrong place and time to go about it. I don’t think I’ve ever been hugged tighter in my entire life. We just cried together like we were the only people around, and I think the only words that were exchanged were “I can’t lose you”. The rest of that weekend, it wasn’t discussed vocally, but I’ve never felt more supported. They say actions speak louder than words, and I think our relationship is a true testament to that. Then again, what on earth would I say if the roles were reversed? Sometimes it’s not necessarily what’s said but how your heart feels.

Once I met with my doctors, they basically told me that I had to start chemo next week. The surgery would be too drastic at this moment and we needed to try to shrink the tumor before we operated. Being told your only real option is to do something you’ve sworn for about 3 years now that you’d never do again is absolutely the worst place to be. Especially when you’re as decisive and stubborn as I am. I’d always thought that if I wasn’t an only child my decisions regarding treatment might have been different, but as my parents’ entire world I felt I had to fight. They saw how horrible the chemo was and agreed that it was my decision. As much as it killed them, they wanted me to decide to do it for me, not for them. So I thought about it. This entire time I’d only been considering the feelings of my 3 parents and myself. Then that night on the sidewalk with my best friend, crying in his arms, popped into my head. His words, “I can’t lose you” will stick with me forever. As much I feel like my life is complete, that I’ve had the absolute best 29 years possible, and accomplished everything I truly want to accomplish, me choosing not to continue the chemo was a bigger decision than me just being okay with maybe not seeing my 30th birthday. Deciding not to do it would have so incredibly selfish. It was about more than just my parents and me; it was about my two best friends who would do absolutely anything for me, the rest of my family, and our inner circle.

Those 4 little words changed my life. They saved me. He actually saves me a lot; sometimes from myself, far to frequently helping me avoid injuries due to my clumsiness, and most importantly has this incredible way of knowing what’s in my head (even if it’s not the front I’m putting on) and keeping me in perspective. He constantly reminds me when I’m pouting about having to miss something because of my chemo/surgeries, that although I may be missing Thanksgiving, a UK game, a Christmas Party, etc. that hopefully what I’m doing will allow me to experience many more of those things. And you know what, he’s one hundred percent correct, it’s just easy to lose sight of that. I’m still on a PEG feeding tube from the last surgery, I would probably run someone over with car for a hot dog, but I’m mostly adjusted to it now. Well I had a party for work that I had planned, so I couldn’t miss it, and it happened to be a length of time that was going to require me to take my feeding supplies and tube feed at the party. In this instance, my feeding pump and bag went into a backpack and a small hose connected from the backpack to my stomach feeding tube. I was nervous because there were going to be a lot of people at the party that I’d never met, and my speech is still pretty terrible after my surgery, so I was having some social anxiety about it. I decided I couldn’t change my situation so I shouldn’t be embarrassed by it, and was fine. I even took a picture of me with my feeding tube backpack and fancy outfit to send to him. I captioned it “first day of school” because that’s how I feel with a backpack on. His response was: I know it has to be difficult walking around with that, but I think it looks great, even better than your dress, because it’s keeping you alive. In my opinion, that is the truest of best friends right there. I could tell you hundreds of other stories similar to this one. I’m so fortunate; my heart could explode when I think about it.

While I think friends are the family you choose, there’s definitely a difference between friends and family. Friends can come and go, while more often than not your family will stick by you no matter what. I have been so blessed to have wonderful friends who have stuck by me during the worst times of my life. It would have been easier for them to just bail, most of us are mid to late twenties, they could find friends with a lot fewer issues then I’ve had going on the past 4 years, and although it would have been easier to jump ship they stuck by me and for that I am eternally grateful. I kind of think I’ve been through enough hell for our entire group, but I don’t think that’s how the universe works, so I will do everything in my power to support them when they are having dark times.

And to the person who saved my life: my best friend. I cannot thank you enough for the advice, always giving me a shoulder to cry on, for crying for me, and for the numerous times you let me forget I’ve ever had cancer and we’re just on some fun adventure together, but most importantly for always saving me from myself and this cancer when I needed it the most. I promise to spend the rest of my life trying to make it up to you. I love you.

I realize I haven’t had a blog post in like one million years… and I apologize for that. I’d like to blame it on being busy, and that’s partially true but also because what should have been the next update wasn’t exactly good news, and everyone who knows me is well aware that I prefer good news and happy times. So even once I decided (got talked into) restarting the blog, I procrastinated because I was dreading having to write this part… I’ll summarize by year to make it easier. So here goes…

2013

In January, I had my jaw reconstruction surgery. They took bone from my iliac crest and used it to rebuild my jawbone. It was definitely a new level of pain for me. I was so used to the surgeries being on my jaw, and I just could not get comfortable after the hip graft. Actually the first time they made me stand up, I passed out because the pain was so bad. That was probably the one time I was glad it was my dad on babysitting duty and not my mom (sorry dad) because he saved me from hitting the nasty hospital floor hard. It was a miserable few days, but a week later I managed to get dressed and drag myself out to TJ Maxx (using the buggy as a walker) for some shopping and Outback Steakhouse for some soup. The recovery was long, and the swelling hung around for a long time, but the worst part only lasted a few days.

In August, I got dental implants. It was an outpatient surgery and was pretty uneventful. That December, they uncovered my dental implants and put metal caps on them to get the skin tissue shaped appropriately for fake teeth down the road.

2014

In February, I got my permanent (well supposedly) dental implants. They looked fantastic, but after almost 2 years to the day without teeth back there, I kept biting my cheek and it definitely took some getting used to. The rest of the winter/spring was fabulous. We followed the Cats around for the NCAA Tournament, and event went down to Dallas for the Final Four/National Championship games. We lost in the championship game, but getting to see that Final Four live, made the trip worth it. That Aaron Harrison shot to win the game was UNREAL!! Chris and I were so excited that I almost lost my wig in the celebration. It’s nice to have some fantastic moments that you’ll never forget sprinkled among the bad ones. I traveled a ton that spring, so when my face started swelling, I blamed it on being in hotels so often and not propped up on my normal mound of pillows at home.

In late May, early June we decided it might not just be swelling and contacted my surgeon. He did a biopsy and it turns out my cancer was back. In July, I had another mandible resection. I was left with two bottom teeth. Skin from my left forearm was used to reconstruct the inside of my mouth. Four weeks later, skin from the top of my thigh was used to cover the skin on my forearm. I thought I was finished with surgeries, but the pathology report did not come back with clear margins, so back to the OR I went. This time we took my last two bottom teeth in order to get clear margins. I swore I would not do chemo, so I didn’t even entertain that idea. We did the surgeries and I went back to living my fun life. It was almost basketball season after all, who has time for chemo during the best time of the year!

2015

I had a clean checkup in February. My Kentucky Wildcats won 38 straight games (let’s pretend that last one didn’t happen, okay) and the season was so busy and so fun going to games and following the Cats, that it wasn’t even fair how perfect life seemed. Until it wasn’t… In July of 2015, the doctors confirmed that my cancer was back again. Three times, dang it really likes me huh? This time I wasn’t given an option about the chemo, so I sucked it up and did it. More on how that decision came to fruition in a future post. I did 10 weeks of inpatient chemo, and it was absolute hell on my body. It caused neuropathy of my heart (like a numbness, most common in hands and feet after chemo- I have that too) and caused my blood pressure to bottom out. Although my chemo treatments were only 5 days at a time, I had to stay in the hospital until my blood pressure wasn’t so drastically low. I blacked out on my mom numerous times. Poor thing- I don’t know how she puts up with me. Being bedridden for days at a time is the most miserable thing in the world. I can tolerate pain, but the helplessness was brutal. I finished chemo a round early, because my oncologist thought my heart couldn’t handle anymore at that point. I took a trip to NYC, bought myself a purse I’ve been lusting over for years, and had all the fun I could before my next surgery.

My (I lost count, so next) mandible resection was in November. That Monday I got a PEG feeding tube inserted into my stomach. My surgery was on Wednesday. The tumor had grown too close to my cheek to get clear margins without taking my cheek, so we used a muscle from my quad to replace the floor of my mouth and my thigh skin to rebuild my cheek. I also got my first (and hopefully my last) trach during this surgery. I don’t know how long I was out of the OR before they realized the graft was failing. I went back to the OR, but my veins are in such bad shape after all the chemo, that they couldn’t save it. I got a break for a few days, and went back to the OR on Sunday. This time they flipped my pec muscle up over my collarbone and up my neck into the floor of my mouth to replace tissue, and used my breast skin to remake my cheek. My boob is literally on my cheek!! I got to spend Thanksgiving in the hospital eating tube feed instead of enjoying it like a normal person. I had over 500 stitches. I spent a week in the intensive care unit, and over a week on the oncology floor. This was without question the hardest recovery I’d ever had. Throughout this whole cancer ordeal, I’ve had so many people tell me how much of a fighter I am. Well I’ve never really felt that way, I just kind of thought I was doing what I had to do. This time changed that for me. I had to fight hard to recover; it was unlike any challenge I’ve ever faced. I hurt from my cheekbone down to my knee. Gradually that got better, and I got my trach out right before Christmas. I might have threatened to rip it out myself if my surgeon didn’t take it out that day, but hey whatever works! I spent the rest of the year at my parents house recovering.

**Very important personal note about 2015, I became a mom, to a beautiful Golden Retriever puppy! She was born on tax day. Her name is Cali, after Coach Calipari. She loves snuggling, car rides, her mom, watching basketball (no joke!), and playing in our yard. I got her about a month before I was diagnosed for the third time, which is horrendous timing, but she is the best thing that could have happened to me. I have never felt more loved in my entire life. She’s the absolute best!

2016

In January, the skin graft area of my face got liposuctioned and the extra skin removed. I got to wear this sweet jaw bra and look like an absolute fool for two weeks. It looks so much better now that I guess it was worth it. By taking my pec muscle and breast skin, I basically ended up having a mastectomy. In February I got a chest tissue expander implant, which is basically a breast implant that gets filled up with saline a little at a time to gradually stretch your skin. I’m currently in the process of making weekly trips to Knoxville to get my expander filled up. Once we’re pleased with that aesthetically, it will get swapped out for permanent implants. I am still tube feeding some, and will have the PEG tube until I’m able to intake enough food by mouth on my own.

So for now, that brings you up to date the happenings in my life. I’ll try to create a post with some pictures so you can see the progression over the last 3 years. I also have some other posts in the works, and will try to be better about keeping this updated.

So a few weeks ago Cameron contacted me and wanted to write an article for my blog about dealing with Cancer around the holidays. Since that’s when I found out, and not that it’s good news on any day, but I personally think it’s exceptionally bad news around the holidays because you and your family are miserable while everyone is celebrating. Also, I loved the idea because I’m too busy to post things myself currently- and well it turns out I was also too busy to get to Cameron’s post before Christmas. So my apologizes that this is a few days late- I hope everyone had as wonderful of a Christmas as I did. 100% better than last year! On to the guest post…

What Cancer Taught Me about Giving Thanks
By: Cameron Von St. James

I love the holidays. I was especially excited for them in 2005, when my wife and I welcomed our only child. Lily was just a few months old, and the holidays were approaching. Heather and I talked endlessly about our excitement over the holidays, and the memories and new traditions we’d create with Lily during our very first holiday season as a family of three. When Thanksgiving approached, Lily was three and a half months old and we couldn’t have been more excited. That is, until three days before Thanksgiving when Heather’s doctor diagnosed her with pleural malignant mesothelioma.

I didn’t know much about Heather’s cancer, but what little I did was enough for me to know that our future was uncertain. I was hoping for the best with her treatment and future, but I was imagining the worse. I was imagining a life without Heather. A life without my wife and a life for Lily without her mommy; the holidays were no longer something I felt thankful for.

As the holiday season came into full swing, we still celebrated as best we could. After all, there was a possibility that this would be Lily’s only holiday season with her mother. Heather’s parents flew in to celebrate the holidays with us before we went to Boston for her surgery. Despite the fact that we both worked full-time, we were barely able to keep ourselves above water with the medical bills and travel arrangements. During our holiday dinner, we had the conversation I’d been dreading for a long time. We talked about my family’s finances. My wife and my in-law’s and I sat around my table talking about our assets and bills. We discussed what we could liquidate, what we could afford to keep paying for, and what my in-laws could afford to help us pay for. I was mortified, and at the time I felt that it was probably the worst conversation I’d ever had.

I didn’t feel very thankful that holiday season. However, a few years later I realized that my pride was what kept me from being thankful at a time when I had more to be thankful for than ever. I neglected to realize that my family and friends stopped what they were doing in their own lives to come to our sides and help us out in this difficult time. I realized that I had a caring, loving family who was there for us when we needed it most, and this holiday season I am thankful for that. I am also thankful for more time with my wife and daughter to create the memories we always hoped for.

Seven Christmases after her diagnosis, Heather is still here, healthy and cancer free. We have been able to create wonderful holiday traditions with our family just as we had planned. I hope that our story of hope and success against mesothelioma can be a source of inspiration to those currently fighting cancer this holiday season.

—I can’t figure out how to add these links to the post so here’s the site for Cameron’s blog and more information on mesothelioma— mt

http://www.mesothelioma.com/blog/authors/cameron/

http://www.mesothelioma.com/mesothelioma/types/pleural.htm

http://www.mesothelioma.com/mesothelioma/

So as most of you who actually know me are aware I’m finished with chemo and back to my normal chaotic life- thus my lack of posting! And of course it would be very un-Megan-like of me to not just jump right into my old crazy routine. Anyway here’s a quick update- I will load pictures and post more details soon, but here’s the short version for now– chemo ended at the end of September, October was spent recovering and getting my mediport out, and November 1st I headed back to the bluegrass state–Hooray!! Since then my life is 98% back to normal– working a million hours, traveling a ton, loving being back with my best friends, turning my house into Santa’s workshop, hosting my annual ugly sweater party, shopping every chance I get, planning New Year’s Eve festivities… the list goes on and on– but needless to say “I’m baaaaack!” The only not back is the hair- well on my head at least- I wasn’t too thrilled about having to shave my legs again-but love having my eyelashes/eyebrows back! I look like my old self again. So my hair-it’s growing- first it started getting thicker, but was SO BLONDE and I was furious- I want my hair to come back just as it was- color and everything– but then it finally started getting darker, and now it’s finally starting to get longer! It’s pretty cool actually- I feel like a chia pet-everyday I’m mesmerized by what I see in the mirror.

On the health front, my October PET scan was clear and I’m still cancer free. My blood counts are still low and no one has a good explanation for that. I generally feel pretty fantastic considering what my body has been through. My energy level is ridiculous! I think my body truly knows what tired feels like now, and has decided that I need to be the energizer bunny all the time. I went from sleeping about 18 hours a day during chemo, to not being able to go to sleep before 2am, waking up several times at night, then back up at 7:30 for work. I swear every morning that I’m going to bed early tonight, and no amount of sleep aid allows that to happen.

My reconstruction surgery is scheduled for January 11th. I’m strangely excited about it- I’ve had a lot of people assume I never want to see another OR or hospital room, but since it’s a different hospital than chemo I don’t associate bad memories with the UT Medical Center… actually I LOVE it! My surgeon is absolutely AMAZING- if you didn’t know I had surgery, you would never know from looking at me, and he’s super nice as well. The staff at the Country Inn & Suites in Knox is completely outstanding- they have been so great to us and made us feel like family in our home away from home, so I’m always glad to see them as well. I of course can’t forget my favorite part of the UTMC- the gift shop. AND the cute residents are just icing on the cake. My only complaint is that there is ORANGE EVERYWHERE, but as long as I don’t have to wear it- I can get over that little detail.

I’m pretty sure no one is looking forward to 2013 more than I am… frankly 2012 sucked, but such is life. I hope everyone has a safe and Happy New Year!

The day before I start chemo, I have a doctor appointment to make sure my white count is high enough for chemo, and go over the plan for my next treatment.  My mom and I talked to Dr. Sehgal about how miserable the methotrexate was last time and decided I wouldn’t do it anymore since my levels were so high and it was so hard on my body.  That moved up my last treatment of Adriamycin, so I only had 2 chemo treatments left!  YAY!!!

My next to last treatment began on September 6th.  Since it was just the Adriamycin this time, it actually wasn’t too bad.  I had lots of visitors, tons of energy, and no nausea.  If I had to pick a favorite chemo session, if there is such a thing, it would definitely be this one!  Plus now that it’s over, I only have one left!! Counting down the days.

**

A little over a week after I got released from the hospital, I ended up in the ER with a fever.  So I was trapped in the hospital for a few days because I was neutropenic (my white counts were low- and my absolute neutrophil count was 0) and my body couldn’t defend itself from infection.  After my counts went back up I started feeling like my old self again!

August 23rd I started my 8th round of chemo, this time it was Methotrexate.  In the past the worst part had been waiting for my levels to drop so I could go home, but this time my Methotrexate level got up to 37 (it had been around 19 in the past) and it made me feel horrible.  They did ultrasounds on my kidneys and liver to make sure they were safe and I basically cried and wanted my mommy the entire time I was in the hospital.  Lucky for me she didn’t leave my side.

Round 8- Feeling horrible

August 2nd I started round 7 of chemo.  It was my last session with both Adriamycin and Cisplatin.  The Cisplatin drops off after this one and it’s just the Adriamycin.  During my first round of this drug I threw up the entire time, but I had gotten this nausea patch and it had helped a lot the past few treatments.  Not this time!  The day started out with me crying on my walk to the oncology floor because I didn’t want to do chemo anymore.  I was cancer free, I didn’t understand why I had to continue.  I made it to my room and had Mom and Dad both trying to soothe me, but still managed to throw up my breakfast.  Anytime I cry I throw up.  It’s terrible.  I was feeling better and Dad went to get Rocco’s Little Italy for lunch and the afternoon went well until I started getting nauseous.  I threw up all night, I highly doubt I’ll be eating there again any time soon.  That’s another bad thing about chemo, it ruins all your favorite foods from throwing up so much.  The next 2 days were pretty average.

sleeping in moms bed at the hospital during chemo

After I get home from chemo, I basically lay around with the dogs all day because I’m too exhausted to do anything else.  It turns out my blood counts were low and that was making me unusually extra tired, so I got a pint of blood and platelets and then headed to Hilton Head to visit my Uncle Gordon.

lounging with Rylee

me in Hilton Head- with my new wig!