An Inconvenient Tumor

...but aren't they all?

Dancing in the Rain

Just over two weeks ago, Bryan's aunt Judy passed away. It was, and remains, a really tough time for the family as she secretly battled cancer -- going to chemotherapy and doctor's appointments alone -- without wanting to burden her family with any worry about her. She spent the last few years of her life making memories with her family, watching her beautiful two-year-old granddaughter blossom and fully capturing the moment filled with laughs and love. When Bryan and I heard that Judy had been hospitalized, we drove up to the Bay Area and were lucky enough to spend some coherent time with her before she passed on. In the emotional days that followed, during funeral arrangements and the somber, reflective time around Bryan's parents' house -- a routine walk downtown turned into somewhat of an epiphany moment for me. In a tiny, nondescript store I came across a decorative sign that practically reached out and grabbed hold of me. It was a simple sign, painted a muted black and worn around the edges, but its message was anything but. The sign read, "It's not about waiting for the storm to pass... it's about learning to dance in the rain." And boom! I teared up a little bit -- maybe I was hormonal, who knows -- but I knew then and there that I wasn't leaving the store without that sign. 

Over the past year and a half -- from Bryan's diagnosis to radiation to chemotherapy to inpatient therapy to Laughs for Bald Bryan to Avastin to months of intensive physical therapy to the slow recession of the tumor itself -- I've had such a hard time successfully living in the moment. I've been telling (or practically demanding, if I'm honest about it) myself to live in the moment, be present and conscious and take everything in, but it's so, so, so much easier said than done. I mean, how can you just let go of all your worries when the slightest catch of Bryan's toe on a curb, minor headache, speech slur or tingle might mean the tumor is coming back? It's always in the back of my mind, no matter how healthy Bryan gets or how improved his functionality becomes. Part of me blames it on the statistics we foolishly read at the beginning (provided by Dr. Doom, no less); the horrific ones that tell you that inoperable brain tumor patients live an average of 14 months post-diagnosis. Or perhaps it was the brain tumor blogs that I read whose authors eventually succumbed to their tumors and passed away. Either way, the stress of my husband's mortality isn't isn't an easy thing to shake, but the fact is that Bryan just ISN'T like all of those other patients. He's surviving, and more than that, he's absolutely thriving. He's so inspired to live his life, have babies and puppies (we've got the puppy part down) and try to move past the tumor the best he can. Meanwhile, I'm inspired to do the same thing; I'm just coming around to it slower than he is. I sometimes find myself trapped in the "what if" room -- sorry people, no amount of therapy is going to make that go away; I've been there, done that -- and any semblance of an "exit" sign is sometimes missing. But that "dancing in the rain" sign made me realize just how much I don't want to be trapped in that room anymore. It's just not ME. 

This whole thing has thrown me for such a loop -- shocking, I know -- that it's really hard to come out on the other side, let go and just get back to being me. There are so many responsibilities we have, so many serious issues to face, but at the end of the day EVERYONE we know has something to worry about; whether it's a job, a child, a sick parent, paying the mortgage or ensuring the health of their marriage. We're certainly not alone. And I'm kind of embarrassed that it took a made-in-China sign to make me realize just how SICK AND TIRED I am of living under the threat of this storm's dark cloud. Bryan and I are both such vibrant people with so much to live for and it's time we (or rather, I) learned to dance in the rain, once and for all. 

This all might sound like a pep talk, and maybe it is. Health-wise, things have been fantastic lately -- Bryan's latest MRI last week showed a TINY, TINY, TINY bit more shrinkage (we'll take it!) and reduction of calcified areas that developed within the tumor over several years -- but now we're trying to figure out where our lives go from here. I'm beyond thankful that we're at this normal point, but we've got some serious issues we have to deal with, namely continuing Bryan's insurance so his condition doesn't bankrupt us. That might sound dramatic, but I'm 100% serious. While we're certainly strong and smart enough to deal with anything that comes our way, let me take you on a quick ride that is our circuitous insurance/employment train. If you're a healthy, employed person without a pre-existing condition, here's where I want you to take a moment to thank your lucky stars. 

Issue #1: Benefits.
Bryan's COBRA runs out at the end of September and neither of us have full-time jobs yet that will replace it/pay for it. Since Bryan's not eligible for Cal-COBRA because CBS is a New York-based corporation, we had to look into individual HIPPA plans. The HIPPA plans didn't cover the specific drugs that Bryan is taking, so we ended up looking into the California high-risk insurance pool. That plan is great but we'll end up meeting the maximum insurance-provided out-of-pocket in about four months, so we need to look at other options. Which leads up to...

Issue #2: Full-time jobs. 
Some long-time followers of the blog might be wondering, "What happened to Cedars? I thought you were getting a job with them?" Simply put, the Cedars full-time opportunity did not work out although I am still doing freelance writing for them. It was unfortunate but I maintain that everything happens for a reason. I'm still loving my freelance gig with them as well as food writing for LA Weekly's Squid Ink blog. Aside from that, I have been putting as many irons in the job fire as I can. The problem is that I need to be really creative about full-time job opportunities, because "full time" for us doesn't translate into 40+ hours in an office environment. Since Bryan's appointments and infusions only occur every two weeks, I'm trying to look for full-time jobs (writing, marketing or otherwise) with the flexibility to work from home/hospital during the 2-3 days/month that Bryan has his appointments. While 2-3 days of flexibility might not seem like that big of a deal, many advertising agencies have work-you-to-the-bone hours, and 2-3 days at home isn't an option. Which brings us to...

Issue #3: Freelance jobs. I'm trying to book as many freelance jobs as possible, because I love them and they provide the income and flexibility we need. And Bryan's positions on the Adam Carolla podcast and as co-host of The Film Fault -- as awesome as they are -- don't provide benefits, either. However, coming back full circle to "Issue #1: Benefits," freelance work doesn't provide healthcare benefits. So as we've learned to do so well, Bryan and I are taking it one day at a time and putting as many feelers out as possible, both in the marketing, writing and radio industries. As always, we're confident that the right thing will come along at the right time but we're being as proactive as possible to ensure that it happens sooner rather than later. We're certainly not panicking, but we're admittedly a bit anxious to get out of the spiraling insurance/healthcare benefits conundrum. 

Last, but certainly not least, over the past several months we've been so happy to run into several podcast listeners and blog readers in L.A. who have remarked about how well Bryan is doing and given us such heartfelt well-wishes. To all of you we want to say thank you again; it's been so great to meet you in person and say thanks for the all love and support you've given us. :)

If anyone has any thoughts -- even satellite jobs outside L.A. that could be done from home -- feel free to email us at Christie@aninconvenienttumor.com or Bryan@aninconvenienttumor.com. Or tweet us at @PardonMyCrumbs or @BaldBryan. You just never know what's out there!

Meet Our Dog: Charlie Bishop! :)

Bryan and I have been talking about getting a dog for a while and finally found the perfect little guy to add to our family: Charlie Bishop. He's a 1 1/2 year old terrier/chihuahua mix and is just as sweet as can be. We rescued him from Save a Spot rescue organization and we don't know much about his past. But we do know that we love him! Here are some photos of our little guy.

Meet Charlie Bishop! He's our little love...

He's the biggest couch potato you've ever met.

Look at that face!

Charlie looooooves to sleep. And I mean LOVES.

Giving and Getting Back

It's been a while since I've written, so it's definitely time for some updates. Over the past few months some really exciting things have happened to Bryan and I, both personally and professionally. Let's get to it.

 
Bryan had another great follow-up MRI at the end of April. It had been exactly one year since he was diagnosed, so to have a MRI that revealed more positive news – no growth – was a great milestone. But I already wrote about that. In the month that has followed, the biggest discussion with our doctor has been whether or not to continue his monthly doses of Temodar (oral chemotherapy) and Avastin. Bryan has already been on Temodar for one year and studies have shown that patients treated with Temodar for up to two years perform better...so that's what we're doing. As far as Avastin goes, I think we're waiting to see how it continues to impact the tumor until Bryan's next MRI in June or July. One of the coolest things for me in the last MRI was to actually see portions of Bryan's "brain" that we hadn't seen since the tumor was discovered. We could actually see healthy brain tissue within the brain stem as the tumor retreated. Comparing that MRI to the one from April 2009 was just so exciting. 
 
Bryan continues to feel better and better, so much so that – as we SPEAK (or type, rather) – he's on his way to Carolla's podcast to start getting BACK TO THE DROPS. That's right, as no doubt you've heard on the Carolla podcast, Adam is getting the gang back together for a daily podcast a la the radio show. For Bryan, that means having a brand-spanking new sound machine, mixer and laptop bestowed upon him, something he was never able to get at the radio station. Tonight is the first taped podcast and since we were out of town for Memorial Day weekend, he spent nine solid hours uploading drop after drop from a CD (thank God he saved them all!) to the sound machine. He was like a kid in a candy store and while he had his headphones glued to his ears, I got a golden opportunity to catch up on some of my girly TiVo'd shows. Glee, anyone? It was a serious win-win. So in the next few days you'll hear Bryan get back to the boards...it's just awesome and I couldn't be more excited for him.
 
In other news, over the past few months I've been working under-the-radar with Cedars-Sinai's marketing department, talking about my freelance position turning into a full-time position with their team. While I've done a lot of writing for their brain tumor site about our experience over the past year, this full-time position would be much more involved in developing advertising for additional departments within the hospital, especially the heart, brain, cancer, spine centers, etc. It would be fantastic because a) I love their marketing team, but more importantly, b) it's an awesome opportunity for me to use my advertising experience to actually make a difference in someone's life. Don't get me wrong, creating cool advertising that sells cars, airplanes and toothpaste can be fun, too – but not nearly as fulfilling for me on a personal level. Let's say a campaign I helped to create got just ONE PERSON into Cedars for a consultation, a second opinion or surgery to save their life. That's beyond worth it to me. It's also ironic, because all along Bryan and I have been saying that we just can't wait for an opportunity to give back. If I could do it every day through work, that would be incredible. 
 
Speaking of giving back, another thing I'm personally doing is joining several events that help to raise money for both brain tumor and multiple sclerosis research. I'm currently training for a bike ride that benefits the National Multiple Sclerosis Society; you might remember that Bryan was misdiagnosed with MS prior to receiving the brain tumor news. The event is held in San Francisco in September and I can't wait to participate and raise money for the foundation. If you or someone you know is impacted by MS and you'd like to donate to my team, you can do so here. I'm hoping to raise $1000 before the ride; all the money goes directly to the National Multiple Sclerosis Society and is tax-deductible. It's just the beginning of a long string of events through which Bryan and I can give back. In addition to the MS ride, there's also a Southern California National Brain Tumor Society Fundraising Walk in October that I hope we can do together. While our experience is never really "over," we know how lucky we are to be at a point where we're healthy, happy and able to help others. So that's what we're going to do. 

Diagnosis Anniversary: One Year & Counting...

April 26 – just over one week ago – marked one year since Bryan was diagnosed by Dr. Doom. Despite all the writing I've done over the past 12 months, I don't have words to properly explain the emotions and experiences through the ups and downs. The diagnosis...Dr. Doom...chemotherapy...daily radiation appointment...inpatient therapy...sleepless nights...endless sobbing...Avastin...and finally, shrinkage. Last Wednesday, Bryan had his one-year MRI. It was a crucial MRI, as his last one was in January and our doctor's try to keep the MRIs on a two-month schedule. However, when you're stranded in Europe due to an Icelandic volcanic eruption, all control goes out the window.

One year ago, the tumor was the size of a walnut. Or golf ball. Or however you want to describe it. Bottom line: it was big. Too big. But given that we had no experience facing brain tumors, we had nothing to compare it to. Last week we got something to compare it to. After the MRI, Bryan's neuro oncologist pulled the current results up on one screen and the year-old results on an adjacent screen. The result? Bryan's tumor has shrunk by more than half. The radiation, chemotherapy, Avastin, physical/occupational/speech therapy...it's all played a huge part in shrinking the tumor. Bryan's doctor was thrilled, going so far as to call the tumor "beautiful." He believes that the treatment has essentially reversed the growth of the tumor and brought it back to a point where it may have been years and years ago. 

Since I've got volcano on the brain, let's use an analogy to describe what's happened. Say Bryan's tumor is a volcano. It's been around for a long time, but it's just been sitting there. Not doing anything, not hurting anyone. Then one day it started to steam. Then another day it started to bubble. Then there were tiny earthquakes, after which nearby residents took notice. But before the volcano was able to erupt, experts were able to relieve some pressure and return to the volcano to its pre-symptomatic, dormant state. Where it will hopefully remain for a long, long, LONG time. 

So what's next? We've got solid jobs on the horizon, would like to get out of our apartment before it collapses on us, and want to get a dog. It's time to get on with life. The bi-weekly Avastin, monthly chemo and bi-monthly MRI visits are constant, but they can't dictate our lives. Instead, they're providing us with the tools to continue living our lives. It's hard to change perspective and not be worried all the time, but we just say "Damn the Torpedos." That said, hopefully it will be smooth sailing for a long time. 

On the Road Again

Watch out, LA drivers. Bryan's back behind the wheel. It all started just over a month ago, when he did a few driving lesson with his therapist. Technically they weren't lessons; they were more sessions focused on getting the hang of being behind the wheel. He did the driving in my car since his truck was still up in the Bay Area. However, he got his truck back – thank you Mike & Adam – a few weeks ago and ever since then, he's been getting his driving muscles in prime shape. He started driving to therapy, which is only about five minutes away from our place. But then one afternoon he got the courage to drive to Burbank for a voice-over job, and made it successfully there and back. It was during the rainy weeks and luckily the skies stayed closed for the duration of his journey! I'd' say he's been out and about on the mean streets of LA...hmmm, almost 10 times? He drove us to a movie, to my parents' house for dinner, back and forth to therapy and today, as we sit in infusion, even drove to Cedars. It's really exciting and while Bryan says he's still getting a feel for the wheel, I'm so happy for him to be slowly re-gaining his independence. 

He'll soon be able to drive himself to work while I drive myself to work. My LA Weekly gig is going really well and there's some other very exciting job news on the horizon. Can't share until it gets confirmed, but we've got our fingers crossed!

Infusion is done. Time to get back into the car and more importantly, get Bryan back on the road again. :)

"The Summer Of Everything Goes"

Bryan and I drove back to La Jolla last Thursday to see his "guru" physical therapist. In case you're catching up, this is the one with whom he spent 30 hours over five days working on everything from fingertip movements to hopping to re-learning the fundamentals of running. At the end of that week, the therapist had taken a true liking towards Bryan and one could tell was invested in seeing him improve. We could tell this because he and his wife told us, and said that they wanted to regularly to follow-up with Bryan to ensure his therapists in L.A. were following the appropriate regimen. Basically, he believes Bryan has the ability to regain 100% of his functionality and is dedicated to seeing him do that. 

Hence the title. At the end of Thursday's session, at which point he had gotten Bryan hopping across the room as well as developing a fast-moving "bounding" motion (a precursor to running), he made a bold announcement: "This is the summer where 'everything goes'." Actually, given the improvements Bryan has experienced in the six days of working with this therapist, it's not that bold. This is the summer where Bryan is running, playing sports, walking perfectly, and well, just doing everything that he used to. The summer where he's 100% back to normal. It was like a group cheer, but not a disingenuous one. We all truly believe Bryan will get there and are privileged to watch every improvement, no matter how small, along the way.

The next morning, Bryan had his bi-weekly appointment with his neuro oncologist. He was thrilled to watch the progress Bryan continues to make. After sharing with him Bryan's experience with the therapist in La Jolla (his take: "Anytime a therapist tells you that you have plateaued, it means the therapist has plateaued. Not you. There's always room to improve"), the neuro oncologist said, "You know, anyone can recover from anything." Most people might let this statement pass without a second thought, but not us. You see, brain tumor doctor rarely, and I mean practically never, give any semblance of hope. None. If anything, they err on the side of caution and concern (which obviously makes perfect sense). But this was the first time Bryan's doctor had actually shared any potential of a recovery. We obviously have no idea what's going to happen in the future but we're taking our unwavering optimism, throwing in the dash of hope bestowed by Bryan's therapist and doctor, and running with it.

Anatomy of Bryan's Braces

Over the past year, Bryan has had a number of braces to keep his leg and ankle in line. As he's improved, the braces have changed to match the shape of his foot and overall ankle function. We've talked so much about his braces that it might be fun to share them with you. Here's the good, bad and the (literally) ugly ankle braces Bryan has worn over the past several months.

Brace #1: AFO (Ankle-Foot Orthotic)
Worn: July 2009 - September 2009
Pros: Prevented ankle from turning under, resulting in sprains. This was a major problem during Bryan's worst months, e.g. Summer.
Cons: Rigid, restricted foot/ankle movement, bulky, uncomfortable fiberglass molding strapped to calf. Not to mention, it was just plain U-G-L-Y.


AFO Front View

AFO; Look how it stands on its own!

Brace #2: Air Cast
Worn: September 2009 - January 2010
Pros: Continued to prevent ankle from turning under, avoiding sprains. Relatively comfortable, used by many athletes. Allowed for increased natural ankle movement.
Cons: Stabilized foot, but we later realized it didn't prevent the front and mid-section of Bryan's foot from continuing to turn. Aside from stabilizing ankle, didn't offer additional help in terms of improving Bryan's overall foot function/gait.


Brace #3: Hinged Foot Brace
Worn: January 2010 - February 2010
Pros: Hinges allowed for increased up & down ankle movement. This allowed Bryan to walk more "heel-toe" versus on a completely flat foot. Small, dark and discreet; could be worn more easily with a variety of shoes. 
Cons: Didn't address Bryan's physical inability to raise his toes and walk heel-toe. While his ankle was stabilized, the rest of his foot continued to walk incorrectly, e.g. flat footed, turning under, etc.


Brace #4: Dynamic Articulated Ankle/Foot Orthosis with Molded Inner Boot, Dorsiflexion Assist Ankle Joints & Inversion/Eversion Control
Worn: February 2010 - Now
Pros: Custom-made from a cast mold of Bryan's foot and ankle. Realigns Bryan's foot and forces it to walk in an anatomically-correct "heel-toe" motion. Prevents ankle turning. Helps retrain foot and ankle muscles to function correctly when walking. Designed to be temporary; once Bryan's foot is entirely realigned and his muscles are retrained, he won't need a brace of any kind.
Cons: Bulky appearance isn't atheistically pleasing and from the back looks like Bryan has a fake foot. Requires Bryan to wear two different sized shoes. The brace is slightly over-sized, requiring "ugly, old man's" shoes (editor's note: these are Bryan's words). Finally, the name is too long. Try saying it three times fast. Actually, try saying it one time fast.

Brace & "ugly old man's shoes"

Customized bottom of brace

Cabin Fever

Not much new to report today. It's day four of Bryan's therapy and day four of me being sick. Again. When we get home I definitely need to go to my doctor, as this is also the fourth round of something trying to invade my system over the past two months. This time is easily the worst as though, I've got some terrible chest congestion, cough, fever and achy-ness. I've been sitting in our motel room sleeping, researching and writing articles. Thank goodness we've got a little sliding glass door so the room can get fresh air, or else I'd be outside sitting at some random table hacking up a lung. Not exactly awesome. 

That's the hard part about being sick when you've got someone in your life who is so-called permanently sick. It's a weird thing for me, as Bryan is doing so much better and his immune system is definitely way back up, but I am always so wary of getting germs around him. He's off all his meds except the monthly chemo and bi-weekly Avastin, so that's the great news. His immune system is clearly stronger than mine is!

Lucky for him, he's gone for six hours/day except when I pick him up and bring him back for his "rest period." They are really kicking his butt over at the therapy program, which is great. They've got all sorts of contraptions that don't make much sense standing alone, but are definitely strength and coordination builders once Bryan starts working with them. He also received his new foot brace yesterday, which admittedly looks space-aged but will really help his foot and his walking. Hopefully he'll only be in it for a few months and then his brain will retrain his steps and foot to work the way it did pre-radiation. 

We go back home tomorrow night and we're both ready for our own bed and our own apartment again. As nice as the motel is, there's really just no place like home. Especially when you're getting cabin fever.

Clearing The Air

Some people have left comments on a previous post assuming that Bryan and I are using a portion of the money from our benefit towards a trip to Italy. Bryan and I want to clear the air, because that is absolutely untrue. To tell the truth, we are insulted and hurt that after being so open and honest with every part of our lives over the past year, some people would immediately assume the worst of us. We truly cherish sharing news with you whether it's good or bad, and when it's something exciting like booking a trip to Italy to celebrate the fact that Bryan outlived his 6-month-to-a-year prognosis, we would hope you would celebrate with us. 

To have to write a post defending our character is upsetting, but sadly we feel it is necessary. Bryan's benefit money is dedicated towards medical expenses ONLY, e.g. his current therapy program, MRIs, Avastin infusions, doctor's appointments, etc. It you want receipts, we can post them. They're not pleasant.

We realize having this blog in the public eye makes it fair game for both supporters and naysayers alike, but at the end of the day, if Bryan and I decide to use every last one of my airline and hotel award miles to take a trip to Italy, that's our decision. Rest assured that not one cent of the benefit money is going towards the trip and luckily for us, neither will much of our personal savings. 

Thanks again for everyone's support. 

- Bryan & Christie

Therapy Is Better By The Beach

Okay, we're not exactly at the beach. But it was a better title that way.:)

Bryan and I are now in La Jolla, CA, near San Diego, this entire week for a one-on-one therapy session. When he was in inpatient rehab at Cedars – a long six months ago – we were referred to a specialized therapy program by several of the therapists. Many of them had been trained under this therapy guru, and were insistent that if we were able to a) schedule and b) afford it, the program would be hugely beneficial to Bryan. So a HUGE thank you goes out to everyone who supported us through Laughs For Bald Bryan. 

We did some research and promptly put him on the wait list, which was 5 months long. Timing being as it is in our lives, we had no idea where Bryan would be physically and cognitively. But we were patient and as you know, have been dedicated to doing four days of physical and occupational therapy per week since September. It has paid off immensely as Bryan's functionality has returned by probably 75%, and it turns out this program was happening at the perfect time.

We got here on Sunday night, had a hilariously romantic happy hour at Rockbottom Brewery and settled in for the week. Starting Monday morning, Bryan had three hours of therapy from 9am to noon, then a break from noon to 3pm, and three more hours of therapy from 3pm to 6pm. These are long days and let me tell you, Bryan takes a big, long nap in between sessions. The therapy is amazing because it is one-on-one, and taught by a man who has literally written the book on PT and OT – more precisely, he's written 29 of them – and worked all over the world performing PT and OT on Presidents and dignitaries. That last part we had no idea until we got down here, but it's impressive and he definitely knows his stuff.

This guy assessed Bryan' abilities within 15 minutes of him walking into the room and was spot on, which really amazed both of us. He said some great things about Bryan's capacity to improve; for one, he noted that Bryan is on a "very important cusp." He's improved so much but some of his functionality is returning in an incorrect way. As an example, Bryan's movement, strength and balance on his left side is returning, but his left foot has basically "taught itself" to turn inward (meaning, the ankle bends and strains under itself). This is a learned movement that Bryan's brain has become accustomed to, but he needs to "unlearn" it and re-teach it to walk the proper way. That said, he was fitted for yet another new brace that will retrain his entire foot and ankle to wait with a correct gait. It makes perfect sense but we never thought about the way his sports braces were helping his ankle stability, but not leaving his mid- and front-foot area to fend for itself. As a result, it started to turn under itself, giving Bryan a funky looking gait on his left side.

Luckily, this brace shouldn't be needed for more than a few months, as it is one of the last things he needs to get almost all the way back to normal. One of his goals from this therapy week is to get to a point where he can return to the gym and eventually get back to playing sports with his friends. We host an annual "Bish Ball" softball tournament for his birthday but had to skip it this year (for obvious reasons). Our friends have already booked a field for 2010, so there's a lot of pressure on him to get back to "playing ball" shape! :)

We're halfway through the week and I can already tell a difference in his gait and his left arm and hand. He was learning card tricks yesterday to help with his fine motor skills. He's energetic, optimistic and really excited to get back to well, pretty much everything. That's definitely something to celebrate.

On a totally separate note, I promised I would share my first official LAWeekly.com food blogger posts, so here they are!