Posted by: cusenbary | April 12, 2013

All part of the healing process…

Brad and I have defined a new sport in developing extensive reasoning on any changes regarding how Brad is feeling…namely anything that does not result in the answer being LB – a form of CSI Steamboat.  I recently had to create a flow chart to track my own reasoning on the fact that Brad was fatigued, had a headache and zero flu symptoms…because OBVIOUSLY this could have nothing to do with a mass in his noodle.  Well, sometimes whatever superpower you believe in, needs to smack you in the forehead to address reality.

At our March 5th scan we saw some swelling around LB.  As a refresher we were unable to pull out the tumor so we cooked it with chemo and radiation – the mass of dead tissue still exists, but we have no reason to think it is active or anything more than ‘dead cells’.  Because Brad has been feeling great our oncologist, Dr Damek, said ‘let’s treat Brad and not just the scan’ – which we loved because who wants to go back to treatment!  I am not going to lie though…we walked into that scan expecting a completely different story (something along the lines of ‘Everything looks great! In fact, you are doing so well we don’t need to see you for another 6 months’).  Yes, something to that tune was more in line with Brad and my plans for 2013.   Turns out we are not in control of those plans…

So, we went home to Steamboat somewhat deflated, but maintained our onward and upward attitude.  However, things did not get better.  In fact, things kept getting worse.  This is where our CSI skills could truly conjure up every possible reason that he wasn’t feeling good.  Some examples included: a virus, allergies (minus any sinus symptoms), his thyroid, a tooth infection, and many more that are too embarrassing to put on the blog.  Our mentality was to lay low and this too shall pass.  But it didn’t pass…it got worse.  At the end of March we had been home laying low for four weeks when one evening the ‘superpower force’ elected to put the smack down.  Brad’s headaches had gotten to be painful (7 out of 10 on the Richter scale).  At this point we cracked and at 6am folded and paged the neuro-oncology dept.  I explained my amazing theories of what was happening to Dr Damek, who responded with a now famous quote…”I don’t know, Laura.  I am guessing this is the brain tumor. I mean…we know that he has one and that it is swollen.”

Last night we headed back to Denver for an early morning MRI and follow up with Dr Damek.  It was a REALLY good appointment.  Turns out Brad is continuing to have symptoms of treatment effect.  We learned that treatment effect is actually healing – the swelling is a side effect of the recovery process.  It is a long process, but it is still going in the right direction.  Brad is back on steroids and Avastin to reduce the swelling and protect his tremendous progress in speech and physical wellness.  We are happy to have a plan in action to get better and back on track…onward and upward we go.  And I must say that there is no human in the world that I would rather be on this journey with – Brad’s unwavering heart and spirit is amazing.  I know he will continue to get better and better…it is written all over that shit-eaten grin of his!

Thank you for your continued support and love.

Brad & Laura

Posted by: cusenbary | November 19, 2012

Great Three Weeks!

We parked the truck just short of The Divide Pond, my old honey hole, and started walking.  (Warning: Larry and Dirk next year I’m coming back.)  About 350 yards, there the elk stood.  Problem is, no cover.

Mitch and I waited for forever, 10 min.  It’s all clear so we sprinted (walked) up the hill.  But wait, Freeze – another elk, COW!  So shooting stix please Mitch, ready, aim, click… !@#$ (supposed to bang).  Misfire!  Don’t panic!  Easy but I operate one handed.  Little help from Mitch…  Breath, breath, hold it… BANG!!!  I SHOT AN ELK!!! Yes!

Thanks to my caller, Dirk, and my guide, Mitch.  The hunt lasted about 30 min, perfect, and the full freezer will last a year.

Good friends!  Speaking of good friends, Matt and Larry Belton stopped by yesterday and dropped off 2 cords of wood.  What???  Added to what Travis and Hobo allready brought… we are blessed!  I love Steamboat!  and Texas too!

Three weeks ago I went in for my quarterly checkup.  Dr. Damek says… how to say it… I’m CRAZY!  Healthy!… and stable!  So much to be thankful for.

Happy Turkey Day!

Brad, Laura, Sy & Dugan

Posted by: cusenbary | August 8, 2012

Slow and Steady Wins the Race…

Barb, Brad & Buck

Well July has been fast and furious – and absolutely fantastic!  After an amazing Tour de Steamboat, Brad and I hit the road to Denver for his quarterly check up and MRI.  This is the first one in a few years that he has been totally med free for (no steroids, Avastin, chemo, etc)…and he is STABLE!  LB had little to no change at all since his last scan in May.  It was easy to assume the results as every day Brad is seeing and feeling small but steady improvements…regardless we were both a tad amped up to get the results (hard to imagine us amped up, I know :)).  And nevertheless we are so delighted to get some more good news!

Brad has been celebrating the exciting news between a trip to Jackson Hole, a four day horse clinic with Buck Branaman, and going a full speed between work and PT (which is mostly a second, full-time job).  He did accomplish his first hike in a long time while we were in Jackson Hole, over a 4 mile cruiser bike ride to a great wedding, and his speech has come so far that he might land a spot as a spokesperson for Avastin!  All and all things are AWESOME – slowly but surely they get better and better.

Thanks so much to everyone for their support, friendship and love.

Brad & Laura

Keeping it classy…

Posted by: cusenbary | July 2, 2012

Where does the time go!

I cannot believe it has been six months since our last post – sorry about that!  I had a few different friends remind me the blog was a bit dated today, so I guess we have been going with the mantra that ‘No news is good news’!  

In 2012, Brad has gotten back on skis, back on a bike, riding his horse, working full time, and so much more.  It is really awesome to see all the progress.  I will do my best in a few quick paragraphs to give the update:

First things first – Brad has been feeling great!  There have been a few small hiccups along the way that we are managing.  Namely, his thyroid has been very confused – in November it decided to go on overdrive and then in January it threw in the towel.  Brad was either in the feather weight division or feeling exhausted in a matter of six weeks.  We have somewhat stabilized in the land of hypo-thyroid and seem to be getting things under control.  The docs are (and this is a quote) ‘stumped.’  Not sure what is triggering the issues but there is the grand assumption of a treatment side-effect so lets hope this fizzles out and goes back to normal soon.  It is funny when the doctor asked how he was feeling and his response was ‘fine’…she said anyone with his levels would struggle to get out of bed in the morning.  I started laughing and said ‘Fine is a relative term.  If you have been through what Brad has been through ‘FINE’ can mean lots of things…any of which are better than chemo treatments and brain surgery.”

And in fact he is MUCH better than fine.  Brad has been regaining his strength with the help of the gang and Johnson and Johnson PT, and adding a new trainer to the mix – Coach Deb is meeting with Brad once a week and the results are mind blowing.  She specializes in bridging the gap between PT and getting back in shape through home work outs.  I cannot believe the results he is seeing in such a short amount of time!  He can hold a plank pose, do lunges, and is working on 12 oz curls in his right hand!

It is a balancing act though.  Brad is loading the plate with work at Vanatta Outfitters, Garage Logic (they reopened!) and helping host the 8th annual Tour de Steamboat.  PLUS, taking care of his other lady (Miss Emily the horse), spending quality time with his ball and chain, chores around the house, etc.  There never seems to be a dull moment – so that is something we are working towards.  This weekend we actually managed to spend an evening at home relaxing in the backyard – he was very happy about that!  We both agreed that could be a nice agenda for July 14th, when we will be celebrating our 5th wedding anniversary.

July in Steamboat will be full throttle with a jam packed schedule of great events: two great friends are tying the knot on Saturday (congrats Dirk and Robin!), the Tour de Steamboat is July 21st (you can still sign up!), and we head to Jackson Hole for a family vacation at the end of the month.  I think the thing we are most excited about is Brad’s next scan on July 25th.  Brad has been off ALL meds since May 24th so we are anxious to see the proof that he is good to go without Avastin or steroids – please cross your fingers and toes!  Based on how he is feeling we are confident good news will be coming from the doctors and we will keep the momentum going forward.

I will post an update after the next scan at the end of the month, and will continue to post pictures on my Facebook page along the way.  Thank you all for the continued love and support.

Laura & Brad

Posted by: cusenbary | January 6, 2012

A Fresh Start…

I love the start of a New Year – a clean slate to embark upon fresh goals with an eager spirit.  It is especially meaningful to Brad and I given an annual reminder that life is unbelievably precious.  Tomorrow marks Brad’s 3rd anniversary to being diagnosed with LB.   In some ways it is easy to hate the 6th of January – but in every other way we are able to cherish it (he calls it his birthday).  We can wake up with gratitude, hope and love – tomorrow is exciting.  Brad feels great and is constantly improving!  He is happy, full of love, and jam-packed with a heart that could lift a lunch crowd at Dairy King.  Life is good…and the best part is — it only gets better!

I have been nagging Brad (hard to believe) about his New Year’s resolutions…or just looking for ideas for myself.  In planning for 2012 I am excited to be present (we used to have practice jerseys for soccer that said “wherever you are – be there”) – I hope to make that happen.  But in a nutshell I hope I can forward along the gratitude and happiness that Brad passes along everyday.  We are blessed to be “present” and tomorrow will be another year that reminds us how awesome this ride is…and as a good friend always says “YOU GET ONE TRIP”.

We continue to thank each and every one of you for your continued love and support.  May 2012 be everything you dreamed of!

Brad and I took the trip to Denver yesterday for the quarterly check up.  The scan was pretty status quo – which is a good thing… just staying the course in land of ‘no news is good news’.  Essentially, the pictures looked pretty similar to the ones from August.

Originally we had hoped to taper Brad off the steroids in the past few months, but were unable to do this as he is not producing steroids naturally right now.  As I understand it, everyone produces steroids via their adrenal gland, but since Brad has been on the drugs for so long he is not making his own.  So, we are mixing up the meds and changing brands to something that will hopefully be easier to ween off of.  Hopefully in a few short months, we will be reducing the Avastin and stepping closer to the goal of getting off the meds.  For now, we stay the course…and that ain’t all bad!

We have been working through some sideways twists lately as Brad is weighing in at 152 lbs. (which puts him as a serious competitor in the featherweight class at Vanatta Outfitters).  We have been tracking the weight-loss and reviewing blood work to try and zero in on what specifically was going on.  Turns out Brad’s thyroid is having its very own Occupy Brad and refuses to turn off (or go away).  This is being caused by an autoimmune disease know as Graves disease.

Graves Disease is one of the most common of all thyroid problems in which the thyroid gland produces excessive hormones. Once the disorder is diagnosed, it is easy to treat and in some cases it can go into remission or disappear completely after several months or years. Although the symptoms can cause discomfort, Graves’ disease generally has no long-term adverse health consequences – the main side effect we have noticed has been the weight loss, but it hard to track in the mix of everything else.  We are going to meet with a specialist soon in Denver, and should know more in the upcoming weeks.  I am optimistic some holiday food and exercise will get Brad back to fighting weight in no time.

Thanks for your continued love and support.  We hope you enjoy a great Thanksgiving with family and friends!

Posted by: cusenbary | October 31, 2011

Keeping Up…

It is hard to believe that we are only a few days away from November – summer flew by at a surreal pace.  Brad is wrapping up another hunting season with Vanatta Outfitters, we have winterized the house, and kicked off our winter driving season with the first white-knuckle trip home from Denver (in typical Cusenbary fashion).

I think Brad is approaching winter with more optimism this year, as he has received a new getaway rig for him and his horse Emily.  A couple great friends, Pam and Steve Williams, were kind enough to think of Brad while they were visiting family in Pueblo, and found this great horse trailer – he now has it polished up and parked in the 146 driveway!  He is on cloud nine about the adventure mobile taking full-shape next summer…and overwhelmed by the incredible generosity of friends.

Since the last scan Brad has been tapering off his steroids in an effort to completely come off all the meds and get another step closer to normal.  After being on steroids for over 2+ years to help reduce the swelling around LB, his body is not producing steroids on its own right now.  We tested his cortisol level and found it to be very low, so the side-effects of fatigue, nausea, etc have set in.  It is a small set-back that is hopefully going to be corrected by incorporating a new brand of steroid that will get his levels back up and provide for an easier taper over the next few months.  It will take a month or so to kick in, but I am keeping my fingers crossed that he will be feeling better soon.  Lord knows Brad is never slow to do anything!

Last week we spent a couple days in Denver working with a few rehab specialists for Brad’s leg and arm.  He got his quarterly Botox injection – feel free to compliment his smooth skin.  The botox has been great at releasing the tone/tension in his hand and leg.  Plus, we spent some time touching up his Bioness tools to get him  walking strong and giving knuckles with his right hand.

In two weeks we head back to Denver for an MRI.  As always the gut has started to twist, but I know in my heart we will continue to get good news…given a few minor hiccups along the way.  I will be sure to post the details as soon as I am able.

Thanks for your continued support…Keep the positive thoughts and prayers flying – we appreciate it.

Posted by: cusenbary | September 8, 2011

Carpe Diem…

The past six weeks have flown by – hosting the 7th Annual Tour de Steamboat with 600+ bike riders, a two week speech program in Denver, family visits, Cheyenne Frontier Days, participating in the Ride 4 Yellow, getting GREAT news on the latest MRI, watching the world’s best road bikers compete in the USA Pro Cycling Challenge, celebrating Brad ‘s 41st birthday on top of Rabbit Ears Pass, a beautiful San Diego wedding with some amazing girlfriends…and now it is hunting season.

The MRI took place on August 24th and reiterated the fact that the treatment effect and swelling had pretty much dissipated.  An MRI sometimes includes what is called a Profusion Scan that shows the blood flow around the tumor area.  A tumor needs a significant amount of blood to create the nasty rapidly reproducing cancer cells (evil do’ers)- so we were PSYCHED to see little to no blood flow in the area.  The tumor is looking smaller and as the doc said – this looks good…really good.  You can only imagine our smiles when we drove home to kick off Brad’s birthday celebration – which included the world’s best cyclists in our home town for a Colorado race!

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Posted by: cusenbary | July 14, 2011

Moving onward, inward and upward

Summer has arrived in Steamboat and the summer schedule is in full swing!  We have put the blog on the back burner somewhat to focus our energy on our dream (returning to normal). But after a few emails and nudges I am going to get back in the habit…or nudge Brad to do it :). The best part is I think he will be psyched to share these posts. Brad is working, exercising, healing…and smiling.

The Tour de Steamboat is this weekend, so we are preparing for the 7th annual Sunshine Kids fundraiser – 250 attendees at a Benefit dinner, 600+ bike riders, and a BBQ ought to provide a fun and festive weekend!  Needless to say, Brad is full steam ahead in prepping for the ride, working away and finding time to spend with his other lady…Emily…his horse.

He is working tirelessly at rehabilitating his body and mind.  It is not happening over night, but it is indeed happening and getting better every day. He finds improvement everywhere: the ability to point his right toe forward in stride, count a hand of dominoes on game night, saddle a horse, or walk a meadow with a friend. Seriously it is fun, frustrating, challenging, exhausting and exhilarating.  Every day we can find something new that is moving in the right direction.  And without a doubt there is an abundance of patience that he puts forth every day that majority of mankind cannot even begin  to fathom.  When we discuss rehab we have done our best to boil it down to the old adage: How do you eat an elephant…one bite at a time.   We know this will take a lot of time and hard work – but we are happy to say we have the time.

Tomorrow we are heading to Denver to meet with a new speech pathologist – phase one in eating an elephant is figuring out the speech.  The program she is proposing has never been done on a brain tumor case, so we are excited to dive into something innovative with both feet and find some solutions.  The theory on this particular treatment is rather intensive and will take two weeks for Brad to spend in Denver with 3-4 hours per day.  It will not be easy, but I think the two of us barely know how to spell the word anymore.

On top of it all – today we are celebrating our 4th wedding anniversary.  So here is to celebrating love, life and laughter ~ and to the husband that can defy all odds and make the universe smile.   We are truly blessed to have one another.

Happy Bastille Day!

Posted by: cusenbary | March 10, 2011

On the move…

Spring is finally itching its way into the Yampa Valley – and this is truly a welcomed change of season.  Brad is on the move and we are ready for the snow to melt so he can take to the streets without the ice.  The Bioness is helping Brad walk with more ease and comfort than he has felt in over a year.  I am on the countdown to a dance lesson from my favorite two-stepper!  For those wondering how the Bioness works, it is a cuff that goes around Brad’s right calf muscle (just below his knee).  It has a sensor under his heal that signals the cuff to fire the muscles in his leg to lift his foot up when he is walking.

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