An Inconvenient Tumor

...but aren't they all? 

Cancer's Double Life

Bryan and I are back at the infusion center for his sixth treatment of Avastin. We met with our neuro oncologist early this morning prior to coming to the infusion center, and it was a great meeting. As of tomorrow, Bryan will be totally off of his steroids, his antibiotic and his anti-acid. For the first time in almost a year, he'll be on only a multivitamins and fish/flaxseed oil supplements, like a totally healthy person. We were very excited to hear that news and for the rest of the appointment, pretty much joked around and chatted with our doctor and P.A.

It was such a casual, cheery meeting, in fact, that it make me take note of what incredible ups and downs this hospital holds for us. It's so strange to think that we've had over 100 appointments here in the past eight months, many tinged with tears of joy and/or fear. That's crazy. If brain tumor appointments were a person, they would easily have bi-polar disorder.

The first appointments, all the way back in late April, were full of fear but strength and a commitment to kick cancer's big fat ass. Then, as we went through radiation, the appointments were full of learning, adjustment to a new life and an understanding of what cancer patients go through. We weren't afraid, per say, we were most rolling with the punches and making friends along the way.

Then came the scary months: July and August. Bryan's radiation effects hit full force and his mobility, cognition and overall functionality were declining, and fast. It was so terrifying for me to watch, I don't have proper words. Our doctor's appointments were full of fear, the unknown and a desperation to know when the radiation effects would "go away."

In September and October, we learned the ways of the infusion center. We'd tackled the main medical towers, the radiation center, the actual hospital (inpatient) itself, and now became one of the bi-weekly infusion patients. That's when Bryan started to improve, got great MRI results and when we really ramped up the physical and occupational therapy. With Bryan's improvements came a totally new vibe in our doctor's appointments as well. It's become "fun," well as much fun as a cancer can be, and we enjoy chatting with our doctors, making jokes and talking about anything BUT cancer.

That's where at right now, but I couldn't help but think about the ups and downs we've experienced over the course of less than one year. Even more strange? The fact that we're going to walk out of here and continue on with our day, as though we didn't spend almost five hours at a cancer center. We'll run some errands, I'll go to a wedding shower and Bryan will rest and watch some TiVo. As if this morning, and a multi-hour infusion of a cutting-edge cancer drug, never happened. It's like living a double life...sometimes it's hard to manage which "Bryan and Christie" we are...the cancer patient and the caregiver, or 30-something newlyweds trying to figure out our lives and our future. Hard to wrap your mind around, but the great news is that with every passing day we edge closer and closer to the healthy and normal "newlywed" side of the coin.

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The New C-Word

I'm switching "C-words." Enough with cancer. At least for this week.

The "C-word" I want to talk about is....COOKIES. Go ahead and laugh, I know you want to. But as it turns out, in addition to this blog and going to Bar Method workouts, baking/cooking is a HUGELY cathartic activity for me. So much so that I made over 100 cookies last week. You read right; 100 cookies in two days.

"What's gotten into you?" Bryan asked.

"What do you mean?" I responded, as I peeked out from the kitchen, dusted in flour, baking soda and salt. My hands were covered in a chocolate chip, walnut and sea salt cookie dough. That was only one of three types of cookies I made, as I also dreamed up mini peanut butter cup/chocolate chip and toffee/walnut crumble cookies.

If I don't say so myself, they were fantastic. Check out the photos as evidence.

There is really something about the precise nature of baking and cooking that is wonderfully satisfying. For me, making cookies is a foolproof recipe, one if followed correctly yields delicious and potentially beautiful results. That's right, I said beautiful. There is nothing better than a freshly-baked cookie, bursting with chunks of melted chocolate, nuts and peanut butter. Or one with a chocolate fudge drizzle that becomes crispy at the cookie's edge. That's pure beauty to me.

Not to mention, I get to experiment with recipes. For anyone who knows me or who has eaten any of my food, I love to take a base recipe and then make it my own. Which is what I did with the cookies. I tripled a recipe of a base cookie recipe, divided it into three bowls and added whatever ingredients I thought would make some kick-ass cookies. Then I baked. And baked. And baked.

The sad news is that I only had one sheet pan (I've since purchased another; thank you 20% off Bed Bath & Beyond coupon) so it took several rounds of 11-14 minute baking cycles to cook all of the cookies. The first go-round I baked for about three hours. The second go-round was about five hours. Our entire apartment building smelled like cookies, so I thought it was only appropriate to share some with our neighbors. Otherwise, you could just call me a giant cookie-tease.

I don't just love baking, I love sharing what I make with others. Oddly enough, personally I don't have much of a sweet tooth. Give me savory any day; wine and cheese to be exact. That said, I love to bake and share. So that's what I did. I made little boxes of cookies for our neighbors, friends and family. I even tied little ribbons and pasted custom labels on the boxes. Dare I say, with the exception of a "Christie's Cookies" or "Bishops' Bakery" logo, it looked pretty professional. I was happy and proud to give our friends some delicious treats that had helped me manage my stress levels. It was a win-win all around.

Last night, I needed something to make for Megan, Bryan's occupational therapist. As I've written before, our "deal" is that she helps Bryan and in return, I make her food. So far I've made her pumpkin bread, chili, pasta, and cookies...but I wanted to mix it up. I had been wanting to make turtle brownies from scratch, but have been intimidated by the thought of making caramel from scratch. Terrifying thoughts of bubbling, burning sugar danced in my head. However, threat to our kitchen and apartment building aside – hey, we're only renters – I decided to go for it. Megan wasn't coming until 5:30 or so, and it was only 4:00pm, so I had plenty of time. I threw together the brownies ingredients, cheated through the "let cool to room temperature" by throwing the batter in the freezer, and started on the caramel recipe. It was easier than I thought, and I even went so far as to make a homemade chocolate ganache - a slippery, shiny, sheen of chocolate deliciousness for those not in the know – to drizzle over the brownies. There are photos of those, too.

I gave a few of the brownies to Megan, to my mom and to my matron of honor, Lyndsey. I'm going to give a few to other friends tomorrow, too, and even take some to a wedding shower on Friday night. Watching other people enjoy treats that I've made makes me incredibly happy and gives me a sense of purpose. Ironically, this is the closest thing to a food blog since I was laid off and Bryan got diagnosed. Short of creating my own food website, I get a great sense of fulfillment by just having the time and energy and capacity to write about food. Adding photos is a plus.

Who knows, maybe a bakery is in my future? Or at least a small-scale cookie/brownie delivery service? As I said yesterday, a girl can dream. But I've got to say, it would just be the coolest thing ever if it somehow became a reality. In the meantime, enjoy the food porn.

                   
Click here to download:
The_New_C-Word.zip (8487 KB)

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Can You Check the Mail?

There have been a lot of jobs I've had to take over since Bryan was diagnosed with an inoperable brain tumor last April.

Take out the trash. Clean the toilet. Wash, dry and fold the laundry. Drive everywhere. Carry and put away all out groceries. These were jobs that we used to share, but once radiation started to take its toll on Bryan's functionality, my identity changed from fiance and partner to full-time caregiver, nurse and wife.

While I adjusted quickly to all of the jobs that Bryan used to take care of, there was one that I really hated. And it was the most ridiculous job of them all.

What was it? Checking the mail.

I can't explain to you how much I dislike checking the mail. My disdain for this simple activity is completely irrational, as it's perhaps the easiest job in the world. Walk to the front door, pick up the mail key, walk two feet outside the door, turn to the left, open the mail slot, and bring the mail back inside. Done and done.

Not so much. In my mind, mail is totally unnecessary. I pay all my bills and do all my banking online, so I don't get any paper statements. I don't subscribe to any magazines, so I don't have that excitement or anticipation of checking the mail for a new issue of, say, Us Weekly. I don't look at catalogs or penny savers, so those go straight in the recycler. Before Bryan and I moved in together a few years ago, I would let my mail pile up in the box for days. Maybe even weeks. Since there was nothing in the mail relevant to me, I could have cared less. Frankly, checking the mail was a pain in the ass.

This is one of the few areas in which Bryan and I differ. Bryan LOVES to check the mail. His affection for the mail was actually a pet peeve of mine, because when we were dating, we would get all ready for a date and start to leave his apartment when he would decide it was time to check the mail. We'd literally be out the door, hand in hand, ready for date night, when he would dash back inside for the mail key and proclaim "I'll be right back! I gotta check the mail!" He would dash down a flight of stairs, run out to the front of his apartment building, pry open the broken mail door (he didn't even need a key) and grab the stack of envelopes and catalogs. He would proudly come running back up the stairs yelling, "Got it!" I never understood his love for getting student loan and bank statements.

When Bryan eventually moved into my place, he took over getting the mail. I didn't check the mail for over a year. It was fab-u-lous. I didn't have to deal with stacks of catalogs, irrelevant AAA offers, penny savers, or credit card applications. Bryan dealt with all of it because in the midst of it all was his actual mail. My admittedly irrational annoyance for checking the mail disappeared, because I was no longer responsible for it.

Fast forward to last June, when radiation took its toll on Bryan and I started taking over both our responsibilities. I remember one day, Bryan was laying exhausted on the couch after a particularly tough day of chemo and radiation when he asked me, "Can you check the mail?"

I nearly stopped dead in my tracks. Dread trickled down my spine. My responsibility for the mail was back. And while my annoyance level soared for about a second, it was immediately replaced with the knowledge that I needed to suck it up and dutifully check the mail every single day. On time. And show it all to Bryan so he could go through it. Why? Because it made him happy, and making him happy and feel "normal" was my number one priority. Scratch that, it was my only priority. As a result, my perspective on the mail changed completely, because I was responsible for replicating the "satisfying" experience of checking the mail for Bryan. Bryan would no longer be able to walk by himself outside of the apartment to the mail box. He couldn't balance himself enough to get from the couch to the front door. His left hand and arm could no longer hold the key to the mail or hold the mail itself. It was up to me to do something as small as checking the mail to give Bryan an immeasurable level of happiness. Checking the mail was no longer annoying to me because it took on a much greater purpose.

Today, eight months after checking the mail daily, Bryan released me from the duty. I was in the kitchen getting water and came out to see Bryan opening the front door of our apartment. Since this isn't a regular sight, I asked where he was going. He said he was going to check the mail.

Again, I stopped dead in my tracks. Bryan's going outside – OUTSIDE – to check the mail? By HIMSELF? He's going to open the door, hold the mail key, successfully walk over the door jam, maneuver around the door, open the mail slot, hold the mail, and then walk back into the apartment, over the door jam, while holding the mail and the key and balancing himself??? OH.MY.GOD.

It made me nervous, but also thrilled. So I watched just in case he needed help. But he didn't. Bryan got the mail. He came back in to the apartment with the biggest smile I've seen in weeks. I ran over to him and flung my arms around him and together, we celebrated this seemingly tiny, yet huge emotional and physical feat.

For the first time ever, I shared Bryan's joy for checking the mail. And even more so, I felt joy that he's able to slowly take back on some of his "favorite" responsibilities. While it's literally a small step, metaphorically it's a huge one.

I can't wait to see what's next. Taking out the trash? Just kidding, but a girl can dream, can't she?

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Ambiguously Gait Duo

That's my nickname for Bryan's legs nowadays. Ever since he started working with Chris, his new physical therapist, Bryan's progress is astounding. Granted, I live with him and am with him all the time, so I notice the tiniest of changes. But they add up and it's inspiring to watch his brain and body re-establish their long-lost  relationship.

Yesterday, after Bryan taped Adam Carolla's podcast with Teresa Strasser, I drove him to Floyd's to get a quick haircut and shave. Since his left arm and hand are still working to regain their coordination, he needs someone to cut his hair and shave him every few weeks. I'm good for a lot of things, but there's no way I'm taking a razor to the contours of my husband's face or neck. Cutting his hair is no biggie, but I'm not going near the straight razor. Freaks me out way too much because I know I'd get nervous and be at risk for cutting him. So instead we opt for Floyd's $15 shave. Worth every penny and the resulting hearing loss. If you've been to Floyd's, you know what I mean.

As we were walking from the car to Floyd's front door, I noticed that Bryan's walking was much more even than it has been. Rather than walking in bursts of two steps - left, right then stopping - Bryan's gait was much more fluid. I had to pinch myself to make sure I wasn't seeing things, but he was definitely moving in the direction of "heel-toe-heel-toe" versus the stutter-step he's been resorting to over the past few months. It was so exciting to see that I stopped him on the sidewalk for a big high-five, hug and a kiss. I'm sure it entertained the passers-by, but we were happy to be their lunchtime entertainment. My man is walking again, hoorah!!!

His left knee was also lifting much more than it has been. His left knee hasn't been bending at all when he's been walking. Try that at home sometime...walk without bending your knee. It's kind of "Frankensteinish," as Bryan likes to say. It's not that he didn't WANT to bend it, rather he just couldn't bend it. But after an insane Monday session with Chris during which Bryan had a waist harness attached to individual ankle harnesses with elastic bungee cords and forced to walk with his hand held behind his back (say that three times fast), something clicked in his brain. We left that session and Bryan was able to bend his left knee a wee bit more than he's been able to in a long while. It translated into all the activities he did throughout the day, whether it was walking around Adam's garage or walking from Floyd's shave chair to the bathroom and back.

So it's progress all around, which gives us so much hope. I even got a call yesterday from a recruiter friend of mine who knows of a freelance advertising job without travel and the potential to work from home. That would be so great, as it would be one step back towards normalcy.

I was telling a friend the other day that I just can't wait for the day when Bryan and I are able to be the givers of help and support, rather than the receivers. We don't want to be labeled with the cancer card anymore, but unfortunately that's not up to us. Nothing would be better than for Bryan to be able to drive his truck again, for both of us to get jobs again and just enjoy our lives (as close to) the way we used to. I've had a few friends say "I just feel so bad complaining to you about my life," and while I guess I can understand, the entire notion is truly ridiculous to me. Being able to share your thoughts, feelings and concerns about the minor (and major) details of life is exactly why we've got great friends in the first place. They're there for me and I'm there for them, no matter what or why. Everyone has problems; the severity of which is all relative. At least that's my opinion.

In Bryan's and my case, we're hopeful that this road to recovery leads us to a place where we can offer our support and love to everyone else, as the amount that we've received is truly overwhelming. For now, we're trying our best to focus on the positive, embrace our support system and moving forward.

That's a hard transition to make, because it wasn't so long ago that things were pretty dire. And it's a reminder that things could go that way again, as it is with the unpredictable nature of brain tumors. But truly, I'm banking on Bryan being one of the survivors that, fifteen years from now, is helping other survivors cope and being a shining example of what it's like to live with strength, courage and hope. I've just got that feeling about it.

We already know we've made a difference to a lot of people, as it seems like every day we get emails from other young cancer patients and caregiver across the country. I specifically get a lot of emails from a lot of other young wives and moms turned full-time caregiver, and it's the least I can do to establish the connection I so desperately wished I could have found just seven months ago. Because they get it, they understand living minute-by-minute, the trips to the cancer center, the hours spent in infusion, the juggling of schedules depending on how your husband feels, etc. It's such a wonderful joy for me to have these women, whom I've never met, to correspond with. It doesn't matter that they're in Connecticut, Pennsylvania, Texas, etc. It just matters that they're there and I'm here and we can be there for each other.

So while this blog is for family and friends to continue to get progress updates on Bryan, it's still also the cathartic outlet that helps me process my feelings and thoughts as Bryan improves. We've been through a lot and I have a LOT to process about what I've seen, done and heard. If it helps other people out there do the same, that's a huge bonus.

Hopefully one day soon these women and men will be able to celebrate something as small and wonderful as their significant others "ambiguously gait duo." It doesn't make any sense, but it makes us laugh. And it's true; sometimes laughter is the best medicine.

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Bad Religion Added To Fundraiser Line-up!

Well, Adam Carolla and the planners of this fundraiser have done it again...

BAD RELIGION have signed on to close the show. So if you've missed the announcements, we've got a comedy line-up of Adam Carolla, Jimmy Kimmel, Greg Fitzsimmons, Dana Gould, Larry Miller and a musical line-up of The Dan Band and Bad Religion. Adam & Dr. Drew will be hosting the event and may even do a live rendition of Loveline.

Should be an awesome night all around and we just can't believe the way this has come together. Hope to see you all there!

www.laughsforbaldbryan.com.

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LAist Article on Bryan's Fundraiser

Caleb Bacon wrote a great article (including quotes from Adam Carolla) on Laughs for Bald Bryan. Per usual, his writing is poignant, informative and funny. You can check out the article here.

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When Laundry Means Love

Bryan and I have had a quiet weekend at home, giving him time to rest after Friday's Avastin infusion. While the Avastin has played a tremendous role in helping him improve, having Benadryl and high dosages of steroids directly infused prior to the Avastin leave the poor guy tired. Really tired.

Bryan's old roommate had a birthday at the Mondrian in Hollywood on Friday night, to which we had planned for weeks to go. When Friday came and Bryan found himself sleeping off the effects of the Avastin on the couch all afternoon, he decided maybe a "Hollywood" night out wasn't the best idea. So we settled for a quiet night of "in n' out"; and I don't mean the hamburger. I mean Bryan drifting "in n' out" of sleep on the couch while I caught up on TiVo. It was a quiet calm night, just what he needed.

Saturday brought USC's first home football game in several weeks, followed by a friend's birthday party at a local martini bar. So far this year we've made a smart call to watch the USC games either at my parents' house or at our apartment, where Bryan doesn't have to walk crazy amounts and deal with swarming, drunk football fans (despite the fact that on any other year, we're part of that swarming, drunk crowd!). It's just too much. Much less going to a martini bar after the game; there was no way we would've made it especially with various steps, a crowded bar and minimal seating opportunities.

This isn't to say Bryan isn't getting better, because he's getting stronger and better every day. But the fact is we have to be really realistic in picking and choosing our "outings," especially after Bryan goes through chemo week or his Avastin infusion Fridays. A crowded Hollywood hot-spot with no handicapped parking and packed full of hipsters precariously teetering near the Skybar pool? Not gonna work. A dimly-lit martini bar with valet parking (a big plus) but steps and a start time of 9pm+? Again, not a realistic scenario for him right now, even with me serving as an extra steady hand.

Our biggest goal right now – so we can get back to these activities and many, many more – is therapy. LOTS and lots of therapy. We're moving past just coordination issues and working to increase Bryan's strength. Every activity in our daily lives is an opportunity for therapy. Since Bryan has been chilling out (aka watching football) most of the weekend, this morning we decided to talk a walk. Now, for most people taking a walk means walking to a destination, e.g. a bagel shop, Jamba Juice, 7-11. Or even just walking a few miles and then coming home.

For Bryan and I, taking a walk gives us a chance to have him practice his "community" skills. In the medical field, there are "at home" skills (self-explanatory) and "community" skills, essentially meaning anything outside the walls of your home and driveway. It could be going to the grocery store, walking to the mailbox, or even something as simple as taking a walk around the block. Which is exactly what we set out to do. When we take walks, however, we start with a goal of simply getting to the end of the block and then making the decision to continue or to turn around. Whereas you and I may be able to just walk at a normal pace without incident, Bryan needs to think about the physical logistics of every step he takes.

"I don't want to reinforce or start bad habits," he says. So instead he's a bit of perfectionist.

During these walks it's important for Bryan to walk by himself (with me following a foot or two behind, of course), so he can get used to areas outside our apartment. Even a crack in the sidewalk can trip him up, physically and psychologically. He can see a tiny bump in the sidewalk and freeze up. The difference between now and a few months ago is that Bryan wouldn't have been able to get over the psychological hurdle of seeing a bump/crack in the sidewalk. Today, however, he tenses up a bit, lifts his left leg a little higher and walks past it, no harm, no foul.

We got to the end of the first block and only needed to stop two or three times to let Bryan's left toes uncurl. Too much walking with his left leg makes his toes curl under, which is painful and hampers movement. Usually the remedy is to just stop a few minutes and let his toes and foot relax. The other "walking" roadblock is when the muscles in his left leg start to shake uncontrollably because they're weak from under-use. The great news about this is that he's using them again and getting them stronger, slowly but surely.

So a few toes curls and leg shakes later, we got to the end of the first block. Bryan has walked all by himself, and only turned to me for support once or twice. He decided to go to the end of the next block "alone," after which we would turn around and walk back hand in hand. He did great getting to the end of the block but the way back presented some challenges; he was tired, his leg was tired and his toes weren't cooperating. When his leg gets very tired, certain overused muscles take over and try and force his left foot to turn under, essentially the way someone might sprain their ankle. He's got a preventative air cast on his left ankle for that exact purpose, but towards the end of the walk his foot was REALLY wanting to turn under.

Bryan walked the width of two blocks – focusing on the quality of every single step – and it took thirty minutes. This might seem like forever, but you have to understand that for us it was an achievement. Two months ago he couldn't walk the ten feet alone to our bathroom, much less out and about in our neighborhood. So it was a slow walk, but it was a sweet walk nonetheless.

We got home, took off his ankle brace and let his leg rest. I went to get our laundry out of the dryer and realized that folding laundry could potentially be another therapy exercise. So while watching football, I handed Bryan five pairs of his underwear to fold. He looked at me in surprise and shockingly, was happy to fold them. It was great for the fine motor skills in his left hand and the extension movements in his left arm. He got through all five pairs in the time it took me to fold our entire basket, but there we were, participating in a pseudo version of what we used to do before all this brain tumor stuff came about. Bryan used to help me by taking out the trash, helping fold laundry (he's very particular, you see!), cooking dinner, etc. He's the perfect partner, in so many senses of the word. However, we haven't been able to do any of those activities together in almost a year, if you think about it.

Today, just the simple act of folding laundry next to each other on the couch was a big step forward. It's not perfect, but it's progress. So on this Sunday, while we watch the Cowboys try to beat the living crap out of the Falcons (helmet to helmet contact, anyone??), we're reminded to appreciate the tiniest of simple acts. Today, that simple act was folding laundry. But that load of laundry was full of love.

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It's Flu Season at the Cancer Center

Man, people are sick here today.

We're at Cedar-Sinai's cancer center getting Bryan's Avastin infusion and it is jam-packed. Normally it's pretty slow and we get in and out; that is, if you consider a three-hour infusion "in and out."

But this is our job now, so we don't mind. We don't make a fuss, act pushy or irritated, or treat the nursing staff with the disrespect that so many other people do. Because just like us, they're doing their job and without them and their knowledge, we wouldn't be able to be treated at all.

There are little revelations I'm learning throughout this process. Today, I learned that if you've got to get cancer, summer is a much better time to have and fight it than winter. I say this because as we get into fall and winter, the flu is here. And this year, we're not battling the regular flu, we've got H1N1 to worry about, too.

There are signs ALL over the hospital about the flu (they're even taped to the parking ticket machine), giving strict instructions about who can enter the hospital, what to do if you've got respiratory illness, and providing copious amounts of Purell and masks at every reception desk.

There are a LOT of people wearing masks here today. That's because, as I said, there seems to be a stunning number of incredibly sick people here today. Way more than what we're used to seeing. Bryan even remarked about it to me, and when he notices it, you know it's bad.

The majority of the patients in the cancer center today seem to be men. I'm not sure why, but they are accompanied by their wives. I've made eye contact, smiled and said hello to a number of women clearly shouldering the task of taking care of their husbands, and it's like looking into a mirror.

These wives look so tired, so worried, so patient and yet trying so hard to keep themselves together. They are rubbing their husband's backs, gently massaging their chemo-affected bald scalps, asking staff for extra blankets to keep their men warm, and making sure the water or juice they are slowly feeding them doesn't spill and stays down.

And this is all in the waiting room.

I feel a kinship with these women, because just three months ago that was me. There are no dividing lines, either, because these women are of every age and ethnicity under the sun. But they have one thing in common: they're doing everything they can to take care of the loves of their lives, short of curing them. They can't do anything to make the medication work better, to kill the cancer, to improve their immune system. But they can keep their husbands warm, clean, hydrated and comfortable. A few women tried to joke with their husbands, but the men were clearly too tired to laugh. It's the craziest thing you've ever seen, watching this one ring cancer circus affect everyone differently, yet exactly the same. And everyone is watching.

Bryan has been doing a lot better, but just a few months ago we were subject to the most intrusive of stares of people at the cancer center. It doesn't matter that we're all here together; it's human nature to look. It used to bother us early on, but realize you have much, much bigger priorities and just ignore it. But unlike out in public, here people look with a silent acknowledgment and understanding. No one wants to be here, yet we all hope that the treatment provided by Cedars is the best we're able to get. So we sit, we wait, and we don't complain when labs take 45 minutes, because really, there is no alternative.

In the midst of this, however, the one thing you don't want to have to worry about is another disease affecting your loved one during an already insane battle. So, when it's flu season, there are a million other worries. We wash and sanitize our hands constantly, I keep our apartment as clean as possible, and we take extra care when we're actually at the hospital. Cancer patients' immune systems are down and it's incredibly important that they don't get exposed to sick people. It's just another job we've got, in addition the therapy, chemo and Avastin.

The good news is Bryan's immune system seems to be considerably stronger than it was in August. As of today, he's down to 0.5mg of steroids, which means (assuming all goes well) in two weeks he'll be off them altogether.

We met with Dr. McHottie, our radiation oncologist, yesterday, and the appointment was good. When it comes to brain tumors, the conversations patients have with doctors are incredibly different than what most of us are used to. There is no talk of long-term prognosis, no talk of a cure; there's just a lot of talk about RIGHT NOW. And right now, McHottie said that the most recent MRI showed that Bryan's tumor looks like a "bunch of dead cells." He agreed that we can expect it to continue shrinking over the next several months, and that the Avastin really helped to calm down the radiation effects. He was confident the negative impact on Bryan's functionality was due to the radiation effects, not tumor growth. He specifically said that if the "tumor was growing, it would continue to grow even with the Avastin infusion." "Basically," he said, "your tumor hasn't budged an inch and it's staying put."

That news combined with the expected continued shrinkage is about as good as it gets right now. But the bad things about inoperable brain tumors is that they're like ticking time bombs; you never know if and when they are going to start moving. It could be two months or twenty years. Or never. We're going for that last option.

Time to get another warm blanket for Bryan; it's especially cold at the infusion center. If I can't cure him, I can at least keep him warm.

Sent from my Verizon Wireless BlackBerry

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Bill Simmons & Dan Band Added To Line-up!

Bill Simmons and Dan Band join Adam Carolla, Jimmy Kimmel, Greg Fitzsimmons, Dana Gould, Larry Miller and Joel McHale for Laughs For Bald Bryan.

All we can say is, WOW...

Bryan and I are incredibly overwhelmed at the amazing response this fundraiser has received. Everyone involved has donated their time, services and talents to put on this show, and we are in awe of people's generosity. The silent auction is going to be fantastic, with signed scripts from shows like Community, tickets to the Soup, a non-speaking walk-on role to Gary Unmarried, studio tour and table reading of Family Guy, big-time power tools (think table saw, power drills and Multi Master), boat GPS technology, trips to Hawaii and Big Bear, etc.

The VIP area will be a great, after-hours environment with a photo booth, lots of appetizers, an open bar and an opportunity to meet and greet all the performers. Joel McHale will be there for the after-hours VIP, too!

It's all coming together...and all we know how to say is THANK YOU.

Tickets available at www.laughsforbaldbryan.com.

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When "Normal" Is Anything But

I wrote a new blog entry yesterday while Bryan was taping a podcast with Adam Carolla, but realized it was way too hard to concentrate on typing when Adam is ranting about "The View" ten feet away from you. I gave up on typing and gave in to laughing instead.

Today, I'm now sitting in Bryan's PT session (it's a lot quieter than the podcast!) while he's having his toes, ankles, calves, knees, quads and hips challenged. If you thought you had a tough "everyday" workout, try isolating every single muscle in your lower extremities and retraining your brain to move them. We can easily spend half an hour just trying to get Bryan's toes to bend slightly (we're one for five). The brain has to get the message to the muscle, and that can take hundreds of reps just to even feel a tingle or get a tiny percentage of the message to the muscle. These physical therapists have the patience of saints; I tell you. Thank God they do what they do, because it's working.

Occupational therapy is the same way. We've spent countless sessions just trying to get the message from Bryan's brain to his left fingers to wrap around a drawer hinge and pull out the drawer. But that also requires the shoulder and elbow to work, so it's another level of brain messages to the muscles. He's working on picking up quarters, Q-tips and cribbage game pieces with his left fingers and placing them in a container one foot away. Again, that involves muscle memory from muscles other than the fingers and hand, so it becomes more complicated.

The fact that Bryan's tumor shrunk is amazing, but he said to me the other day, "the fact is I still have a brain tumor."

Yes, he does.

We're incredibly buoyed emotionally by the shrinkage (this is one time when shrinkage is a good thing), but the truth is that right now we've got to work harder than ever.

We're nowhere near a normal life. If you count hours and hours of daily therapy, monthly chemo drama and bi-weekly Avastin infusions at the cancer center "normal," let's try trading lives for a bit. Bryan and I would happily give this up to go back to work and a normal life. When going out to dinner a few times this month so we can actually get out of our apartment and feel more normal, it's still not a normal experience.

It's not normal to help your husband walk out of the apartment, take a few extra moments to practice his fingers wrapping around the doorknob to close it, get him situated and balanced while I lock the door, help him down one step, and then start to sloooooowly walk down the driveway to the car. Then I help him into his seat, close the door, and go around to get in the driver's seat.

We haven't even left our driveway., mind you. And usually wives don't drive everywhere, either.

When we get to the restaurant, it's not normal to search for a handicapped parking spot, run around the car, help Bryan out, make sure his footing is secure and balanced, focus on the quality of each and every step towards the restaurant door, navigate any steps (steps are a huge challenge) and finally get to the DOOR of the restaurant.

Need I say more? We haven't even walked to the table, ignored the stares of strangers wondering what's wrong, focused on clear speech for ordering, gotten up to the bathroom, etc.

And then there's the yucky, yucky, yucky chemo that Bryan does five days a month. It might as well be two weeks a month because it pretty much knocks him out. The next round of the chemo is right before the fundraiser, so we're hoping he bounces back especially quickly.

An article I read yesterday summed up the effects of chemo on the body perfectly: "Chemo attacks healthy cells while killing bad cells." Since Bryan's chemo is a very high dosage - 400 milligrams daily - it definitely has a big effect on his body. About two days into the chemo I noticed that Bryan was really fatigued, about three days in I noticed he was starting to slur a little bit again, and by day four I noticed that he was having trouble walking and balancing again.

Now, the impact on his functionality was not much compared to a few months ago, but I still got a lump in my throat and a knot in my stomach seeing ANY decline whatsoever in my husband. I think I'm so sensitive to it that to be honest with you, I feel like I've got a version of PTSD from everything I've experienced and seen over the last seven months. But that's a blog for another time.

Bryan still did physical therapy during his chemo week, and our therapists could tell he was fatigued. They were incredibly impressed, however, that he's not throwing up during his sessions. Sorry to be gross, but chemo is a poison so people obviously get incredibly sick while on both the pill and infusion form. The therapists spoke too soon, because that night Bryan started feeling queasy. We doubled up on his Zofran (anti-nausea) and hoped that would work. But throughout the entire week, Bryan was queasy in addition to feeling fatigued, off-balance and slurring a bit.

Bottom line is, chemo sucks. But it's working, so we'll do it once a month for up to two years. That's a LONG time.

We've got occupational therapy tomorrow and then Avastin infusion on Friday, so that's another few hours at the hospital.

The fact that we've been so incredibly excited to focus on something OTHER THAN CANCER and post short entries updating people on the fundraiser is a big deal to us. We can't wait to say thank you to everyone who's sent their love and support to us live and in person.

PT is done, so it's time to go. More blogs to come, and we hope to see you on 11/20!

www.laughsforbaldbryan.com

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