Through the Eyes of Her Husband and Caregiver

THOUGHTS FROM THE CAREGIVER

Although I could go on for days regarding the struggles Rachelle and I have faced during the course of this journey, I'll try to provide a few brief thoughts that might give some basic insights to everything we've had to deal with.

As Rachelle's husband, I like to think of myself as a problem solver and someone who gets things done when Rachelle needs assistance. With that said, there's been nothing more frustrating and painful for me than the hopeless feeling of watching Rachelle suffer over the past few years, and me not being able to do anything to help her or ease her pain.

She's gone through 6 surgeries, been to countless doctors appointments, counseling sessions, and had extensive testing, but until very recently, had no official diagnosis. I feel like a good percentage of this journey has been fighting the frustration of not knowing what her illness was, and which direction to head in terms of treatment.

We've had issues with doctors and nurses regarding best treatment options, emergency room doctors assuming she is seeking pain medication and treating us like addicts, disagreements with family/friends who don't quite understand her diagnosis, and/or believe they know better regarding how she should/shouldn't be handling this situation.

Once Rachelle was actually diagnosed with Chronic Sclerosing Osteomyelitis, it's been equally difficult explaining everything to friends, family, my employer, other doctors, and pharmacists, etc... because most people are not aware of this disease... and until recently, Rachelle and I were both in the same boat.

In addition to the issues mentioned above, there's the financial aspect which has created plenty of stress and anxiety during this time as well. I will not get into the specifics, but as you can imagine with 6 surgeries, 4 of them far away from home, being either in Minnesota or Florida, multiple hospital stays, medications, etc.. that we have been forced to pay a truckload of medical bills over the past two years. 

Complicating things further, Rachelle was denied for Social Security because her disease hasn't been officially recognized on their list of the "approved diseases", and therefore, we have been unable to receive much needed financial assistance to keep up with the medical bills/debt we have accrued. It is even more frustrating that the few people we have encountered that have CSO of the jaw, have received SS disability. So now we are having to get a lawyer involved to try and get some relief. 

One last problem I'll vent about is the lack of support groups or websites directed towards caretakers not related to elderly individuals. I've tried to track down different websites, forums, and/or support groups dedicated to younger caretakers dealing with chronic pain, but have come up empty.

These are some of the struggles we have dealt with over the past few years but at least it does look like we may finally be able to see the light at the end of the tunnel.

Although it seems like we've had to deal with a lot of negatives, we've certainly had our share of blessings as well. As Rachelle, myself, and her family have had to deal with this for a couple of years, we're definitely a stronger and close-knit family than ever before. 

Another positive that has come from this experience has been that we've been able to help others dealing with chronic pain, even if it's just providing a small seed of hope for the future. We've met so many new people through Rachelle's blog and other outlets who have shared in similar experiences and/or are just beginning, and looking for advice.

It's certainly been a wild ride and hopefully it's coming to an end soon. 

Picture of Rachelle and I before surgery at the Mayo Clinic

Please keep Rachelle in your prayers as she continues to recover from her latest surgery. 

Path to Recovery: The Days Following Latest Surgery

Rachelle is recovering from her latest jaw surgery which took place on February 12, 2014, in Miami, Florida. I wanted to provide a quick update regarding her post-op progress and overall health, from my perspective (as her husband).

GIRL

To begin, I've never met a stronger and more courageous person than my wife, Rachelle. She volunteered at the Fashion Industry Gallery for 3 years, while working for BCBG and being an active member of Alpha Chi Omega (where she often volunteered at the battered women's shelter which is their philanthropy), and participated in 2 different internships while attending college. 

After she graduated from Baylor University, she worked as a wardrobe stylist for MTV, worked a full-time job, and created her own fashion label Rachelle Briton Designs. She has also worked with a number of charitable organizations using her talent in various ways.

Additionally, Rachelle has also made a commercial with FedEx for her business, and more recently was a set costumer and assistant costume designer for an upcoming feature film. Although she is unbelievably talented at so many things, including designing, styling, singing, dancing, acting, etc..., her greatest attribute is clearly her caring personality and overall beauty as a human being, inside and out. She has a passion for helping others and does so every opportunity she can.

Per Rachelle's wishes I would like to include this message from a man who follows this blog. He recently e-mailed her about his wife's struggles which that deeply touched her heart and wanted to share with you.  

"Eight years ago, my wife Heather was diagnosed with mesothelioma; a rare cancer that kills most people within 2 years of diagnosis.  She had just given birth to our daughter Lily, and was only given 15 months to live.  After a life saving surgery that included the removal of her left lung, LungLeavin’ Day was born.  On February 2, 2014, we celebrated 8 years of Heather being cancer free.

The purpose of LungLeavin’ Day is to encourage others to face their fears!  Each year, we gather around a fire in our backyard with our friends and family, write our biggest fears on a plate and smash them into the fire.  We celebrate for those who are no longer with us, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, we celebrate life! 

This year & next, we ask that you help spread the word about LungLeavin’ Day.  We created an interactive page mesothelioma.com/heather/lungleavinday that tells the full story of our special day. Although the day has passed, we hope you will still check it out"

FASHION

All I have seen are hospital gowns...so I'll let her update you on this one shortly. 

PAIN

Rachelle underwent her last surgery this February to treat Chronic Scerlosing Osteomyelitis.

During the surgery, Dr, Marx amputated roughly 3 inches of diseased bone from her right lower jaw, and replaced the bone with a titanium chain in order to secure the area (pictured below). In addition to amputating the bone, Dr. Marx had to remove one more tooth, the main nerve which runs through the lower jaw, and inserted 8 screws into the non-affected jaw bone to secure the titanium chain. He also had to make incisions along the entire lower jaw in order to seat the titanium chain properly, so in addition to everything else going on in her mouth, she also has to deal with nearly 100 stitches in her mouth.

As Dr. Marx had no other choice but to cut the nerve in her right lower jaw during this major surgery, Rachelle will now be numb on the right side of her lower jaw permanently. He did say that other nerves close to that area may extend and help her potentially regain some feeling in the jaw one day, but he cannot say for sure.

As this surgery was pretty extensive, Rachelle had to stay in the hospital for 5 days to ensure everything was healing as expected. As of now, she is still on a semi-liquid diet, and is expected to be in moderate-severe pain for the foreseeable future. 

Assuming the infection has been removed, we will be coming back to Miami in 6-8 months so she can have a bone graft of the area, which will require her mouth to be wired shut for several weeks. Another 6-12 months following that surgery, Rachelle will hopefully be able to start receiving dental implants.

Following Partial Jaw Resection

July 2013 (above)

Following Jaw Resection

February 2014 (above)

Only An Open Heart Can Catch A Dream

THIS GIRL

The count down has begun! We leave for my surgery soon, and thankfully, I have been surrounded by my faith, family, and friends. Today, after months of searching, we finally found a place to stay in Miami! It was so hard to find a place because we will be there on Valentine's Day. Yay! Happy Valentine's Day to me and Brian in the hospital! Although, I'm not thrilled about the concept I am thrilled that we will be removing the infection, finally!

Keep an open mind for this next section-

You see, I have these dreams that come true, sometimes. I can't share them with you because most of them are extremely personal, and about other people. But, I will tell you 3 nights ago my sister sent me a text of the place in Miami my mom wanted to stay at (we have been texting and e-mailing for months), and I woke up and looked at Brian, and said "This is the place we will end up staying at... I just had a dream about it." Later I was told that the dates didn't work out so we would be staying somewhere else. Today my dad called and he booked the exact room I recently dreamt about (my parents didn't know about the dream). I think I had this dream to relieve stress because I didn't think we would find a place to stay.

I am trying to understand why and how I receive this gift... My research came to this: My sister has similar visions that happen to her when she is awake. I believe it stems from our Native American background. We come from the Comanche Tribe, my sisters and I are the great-great-granddaughter's of Quanah Parker. Native American culture as a whole had vivid dreams, so they invented and believed in dream catchers. 

FASHION

Yesterday was fun, I tweeted with Frederic Fekkai about hair. This is one of my favorite hair companies, and I am extremely picky because I have big bouncy curly hair that is hard to maintain. I was tweeting with them about tips for winter hair.  I asked them what is the best way to keep your hair breaking in winter. They suggested a weekly treatment using Technician Color Care Masque to keep your hair healthy. I haven't ever used this masque so I have to give it a shot and let you know. Follow me on twitter to see my thoughts up to the seconds: https://twitter.com/rachelleBriton

To keep up with more of my fashion picks go to my pinterest page .

I love this shot I found on Pinterest. I would call it "Playing Dress Up on the Playground".

PAIN

Mentally, I'm preparing to give my osteomyelitis what it deserves, a war. And the mentality that I won't back down. The disease has had its fun ruining my life and spirit. It's time for me to get ME back!

“Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, 'cause it's gonna have a long day doing it.” - Jim Beaver

Please leave other encouraging quotes to inspire me and others through our difficult journeys.

A Super-sized Week

THIS GIRL

Had a fun, yet a little nerve-wracking weekend. We had a rehearsal dinner, wedding, and then the Super Bowl. Friday night we went to Luling, TX, for Chris and Kristine's rehearsal dinner. Brian and my sister-in-law Jennifer Keily set up the stage, did sound check, and practiced a song they were going to perform at the end of Kristine's vows as a surprise for her groom. 

Honestly, it was weird being the stagehand. I'm so used to Brian helping me set up all the equipment for fashion shows, it was nice to help him by returning the favor for once. Brian has been my stagehand and many other things, countless times. I am blown away with Brian and Jen's talent. It was beautiful to watch the whole process unfold from initially learning the song at home to playing it live in front of hundreds of guests on the wedding day. 

As far as the dinner was concerned, Chris' dad made the best pork chops I've ever eaten in my life. I wish I could give you a recipe or a place to go but some things are just better when they are homemade.

A glimpse of Brian and Jennifer rehearsing "Songbird" Friday night

On Saturday, we went to Chris and Kristine Zaiontz's wedding at Zedler Event Center in Luling, TX. Jennifer sang a beautiful rendition of Fleetwood Mac's "Songbird", while Brian assisted her with his mad guitar skills. God has given Brian and his sister's the beautiful gift of music, which comes from my mother-in-law Kim Miller. Brian played a Paul Reed Smith, SE Angleus, blonde acoustic guitar that will soon be for sale on Guitar Maverick. It was a beautiful wedding with lots of laughter, surprises, and fun. Kristine designed and made all the decorations for the reception. A bride-to-be even stopped by the wedding reception to see what the event center would look like in action. She liked it so much that she asked to buy all the decorations Kristine made!

My beautiful niece Brooklyn who was a bridesmaid on Saturday

Friday and Saturday were so exciting but yet so exhausting that I slept almost the whole day on Sunday. This means I missed the big game and a great time with my friends... I'm so sad the Denver Broncos lost. I Really thought Peyton Manning was finally going to get that 2nd Super Bowl ring just like his brother, but I guess it wasn't meant to be this year (he still has time). At least I didn't have to sit through the agony of watching the defeat. As far as the halftime performance, I love Bruno Mars. He is amazing and the Red Hot Chili Peppers are my favorite band of all time. 

Sunday night Bruno Mars and Anthony Kiedis

FASHION

This week we received some exciting news. My friend and wonderful musician/performer, Larissa Ness' song "Get To It" debuted on National Television. Larissa and I became friends around 2010. We both are persistent, have big dreams, passionate, creative, innovative, and are extremely driven (my husbands kind words). Austin, Texas isn't the easiest place in the world to make it as a Pop Star or Fashion Designer, but we haven't let that hold us down. We instantly had a lot in common when we first met, and have worked together on lots of projects including charity events, concerts, fashion shows, and photo shoots.  

Larissa Ness was surprised with news that her song "Get To It" was showcased on the hit TV show Abby's Ultimate Dance Competition (Lifetime). Please visit Larissa's website to see the dancer perform to Larissa's hit song on http://larissaness.com/get-to-it-featured-on-abbys-ultimate-dance-competition/ . Before it ever hit TV, Larissa and I had a blast working together for her Sneak Peak Album Release Concert. I designed and styled the costumes for Larissa, her band, and dancers. Larissa had the idea that I should design Mad Hatter Hat's for the band and it was amazing! Once she put that idea in my mind, I just ran with it and I'm very proud of the final product. In fact, the hats have been soo popular that people from all over the world started purchasing them. Larissa's inspiration for the Mad Hatter hats has turned into one of my top sellers.

This lady is truly amazing, vocally she is perfection on an album, and when she sings live it's just as good if not better. We have both come a long way together, it would mean a lot to me if you would take the time to visit her website, download her music, and/or follow her on social media. I promise you will see her name in big lights soon... in Larissa's words "get to it". Please support my friend and her big dreams!

Here is a reel from her Sneak Peak Album Release Concert. Larissa and her companions on stage are all wearing designs by me, Rachelle Briton.

This picture is of us behind the scenes during a photo shoot for some of her newest singles. Larissa's wearing a dress I designed, and named "Inhibitions" after her song. 

PAIN

I'm going to Miami in about a week to see Dr. Marx for a wide jaw resection.  The resection will include removing my jaw bone extending from my TMJ to the right mandible near chin, and a titanium chain will replace the amputated bone. In order to remove the jaw bone, he will make an incision on the right side of my neck, and work from underneath the jaw. The titanium will stay in my jaw forever, even after the bone graft is implanted about 6 months later. 

The surgery will happen in 2 phases. The first phase is going to be less complicated than the second. Usually, a successful wide jaw resection removes all of the infection and necrotic bone. However, there is always a chance that the disease might linger. That's why I have to wait 6 months before I am able to receive the bone graft. 

I have full faith in Dr. Marx as he is a remarkable oral surgeon. He's published 9 books including Osteomyelitis of the Jaw. He is Chief of the Maxillofacial Department at the University of Miami and teaches there as well. He educates and performs seminars for oral surgeons around the world on the latest research and treatments on a variety of topics. When it comes to CSO and jaw cancer, he is simply the best.

This week, I have many things to do in order to be prepare for surgery. Today, Brian and I went to go see my pain management Dr. at Austin Pain Associates  to get all my post operative instructions. I happened to notice this encouraging sign about exercise and pain. 

If you have chronic pain like me and don't exercise you will still have pain. If you have chronic pain and do exercise you will still have pain, but it won't be as intense, and you will release endorphins which will make you happier and more pleasant to be around. For those out there fighting chronic pain or illness...let this little chart be at least one reason to work out… doctors orders!