briansereno.com

I’ll be in the New York City area from Thursday night to Sunday night, and while I’m mindful that I haven’t missed a night of blogging since the inception of BrianSereno.com, I’m fearful that my streak might come to an end this weekend.  I’ll certainly try hard to avoid such a thing, but since the news of my superior fortune has spread far and wide, I’m not sure if you need daily reassurance from me that “all is well”.  Trust that all is well indeed, in fact, I’m five or six steps beyond well.  I couldn’t be doing any better, and I plan on celebrating that fact over and over with friends in the next few days.  Hopefully I’ll be in touch again soon, but if I slip up and miss a night please do not fret.  Rest assured, I’m on top of the world.

Other

Don’t applaud my determination just yet.  Today when I awoke at 7:00 to go on my promised jog, a couple of factors prohibited me from pounding the pavement.  First, it felt like it was 100 degrees outside, though in all likelihood it was probably just in the mid-80s, but with the humidity to match it.  Second, but probably more importantly, my legs wouldn’t let me go anywhere.  I’ve learned a valuable lesson about stretching, and about following the rules.  Not only did I not stretch before or after my first jog, but I ignored the part on the website that said that I must be able to run for 30 minutes without stopping before beginning training.  As I mentioned previously, I only jogged for 1.5 miles before I stooped, so unless I’m slower than Ron on the Big Fat Loser show, I obviously can’t run ceaselessly for a half-hour yet.  So, while I am dedicated and determined to complete a half-marathon this year, and a full marathon the next, I derailed my own training by being foolish and overly ambitious.  Back to square one.  Tomorrow I’ll begin working on my cardiovascular ability, and will gradually work my way up to 30 minutes of non-stop running.  In all likelihood though, like I did today, I’ll have to work on my cardio abilities on the stationary bike.  I logged 11 miles over 40 minutes this morning in place of my jog, and will try to build on that tomorrow until my throbbing thighs and shins cool down.  Bear with me.

Next, Jessie and I added Green Day to our summer concert tour tonight, and Billie Joe, Mike Dirnt and Tre Cool vaulted into second on the ranks of Sereno’s Favorites of ‘09.  They couldn’t quite top Britney, but passed over Billy Joel and Elton John with ease.  NKOTB is a distant fourth.  I’m quite sure that the two of us (and maybe Sandra), are the only humans alive that have seen those four eclectic acts this year, but Green day solidified in my mind tonight something that I’ve long believed.  If you’ve got it, you’ve got it…and Green Day has it.  Regardless of the kind of music the best performers know how to entertain.  Tonight, Green Day put on an amusing show, replete with audience interaction, fans being brought on stage to sing and play guitar, pyrotechnics, and a wide array of their songs from the last two decades, with special performances of songs that aren’t their own like ‘Earth Angel’, ‘Sweet Child of Mine’ and ‘Shout’.  It was quite a night.

Other

I mentioned yesterday that my lungs were the culprit in preventing me from running for the duration of my first 3-mile journey.  As it now appears though, it’s my legs that may derail me on my run tomorrow.  I awoke today with painfully sore thigh muscles, surely because I didn’t stretch properly before and after my run yesterday.  I tried to stretch the troublesome areas today with mild success, and while I can now sit and walk without discomfort, jogging is another story.  On account of our plans to see Green Day in concert tomorrow night, I’ve scheduled my run for 7:00 am tomorrow.  Regardless of the physical condition of my legs, I’ll log the requisite three miles in the morning.  Whether those miles are jogged, walked, limped, or a combination of the three remains to be seen.

Other

For those that thought that I was being facetious when I indicated that I plan on running a marathon one day, you’ll be surprised to know that I began training tonight.  For those that thought that I drastically underestimated the physical and mental endurance that it would take, you may be right.  

I found this website today … http://www.marathonrookie.com/half-marathon-training.html … detailing a training plan that will build me into a half-marathoning machine in the span of 10 weeks.  My logic is that I can’t complete a marathon until I can at least do half of one, and since I haven’t run on roads since I was in high school, I figured that I’d ease my way into the proverbial pool from the shallow end rather than diving headfirst into the deep end.  Well, as you can see if you scroll through the site, Day One requires a 3-mile run.  

With my running shoes laced up, adorned in de facto running gear, I headed east on Eisenhower Avenue for what I thought would be a simple 3-mile run.  Before I get into the details though, I want to say that I was ultimately pleased with my effort.  It reminded me of my academic career, in fact.  Unspectacular, but I finished, having exercised the right to cut corners and take it easy from time to time.  

The plan was to run for 1.5 miles down the road, about face, and jog 1.5 miles home.  Unlike the last time that I decided to train for a marathon (when I ran for just shy of a mile, got tired, quit, walked home, and exaggerated the story to poke fun at myself by saying that I made it to our nearest neighbor before waving the white flag, only to have my own joke thrown back at me by my family for the past 10 years), this time I actually made it to my destination without breaking stride.  The problem, however, is that when I reached the 1.5-mile marker from our condo, my lungs felt like a flaming voodoo doll that was being stabbed in all directions after it was set ablaze.  My legs weren’t the issue (I don’t think), or maybe the pain in my lower extremities was barely a blip on the radar as compared to the imminent threat of my exploding lungs.  So, while I was pleased that I ran for 1.5 miles, I did have to take a break to walk for a few minutes on the way home.  I later resumed running, then walked again, then planned on finishing strong until I ran into Jessie who was waiting for me not far from our condo to offer some words of encouragement.  At that point I decided that I was done for the day, and walked for the final 100 or so yards of my 3-mile journey.  

In the end, I estimate that I ran for 2.25 miles today, while the .75 miles that I walked were something like a first-hole mulligan in golf.  I gave myself a break since it was Day One.  After a scheduled day of rest tomorrow, I plan to complete the 3-mile run on Wednesday.  Stay tuned.

Other

As I’m sure you are well aware, this was supposed to be a ‘treatment weekend’ for me.  Last week at this time I was bracing for a trip to Duke, fully expecting the good news that I’d resume treatment as usual since the scans of my brain continue to look good.  Little did I know that I’d receive the overwhelmingly astounding, remarkably shocking, superbly wonderful, better-than-great news that I was given.  Suddenly, what I expected to be a ‘treatment weekend’ became a ‘non treatment weekend’, as all of my subsequent weekends will be, and I had no problem whatsoever re-immersing myself in the normalcy of summer weekends.  A trip to ballpark, a Saturday noontime awakening, an outdoor concert, lunch in Baltimore on Sunday, a visit to my older sister’s place…and through it all I’m quite certain that there wasn’t a happier individual around than me.  I can’t speak for others, but if I’m anywhere near as enjoyable to be around as I am enjoying just being me nowadays, then call me Mr. Congeniality.  I relished in a weekend that all weekends should be like, and I’m just delighted with all that is transpiring.

Other

This is going to sound like a full and complete indictment of ‘42nd Street’, the tap musical that we saw at Wolf Trap exactly one week ago, but I don’t mean for it to be.  Despite the lack of entertainment that it offered, I did enjoy myself at the performance.  However, when Jessie and I returned to Wolf Trap tonight to see the National Symphony Orchestra play the music of John Williams, despite the torrential downpours that we sat through, I had an even better time.  Huddled under an umbrella atop a blanket on the soggy Wolf Trap lawn, we couldn’t help but laugh at the situation.  Perhaps it was the stormtroopers that marched by on occasion, the Hans Solo costumes or the abundance of lightsabers that made us chuckle, but I think it may have just been the liberated feeling that only comes after the unexpected cancellation of chemotherapy yesterday.  We ate popcorn and grapes while waiting in hopes that the rain clouds would pass, but after hearing some of Williams’ classics from Jaws, ET and Harry Potter, we had enough of the rain and headed for home.  The Star Wars fanatics that surrounded us were perplexed by our decision, but not as perplexed as I was by the ‘R2 builders’ that were there passing out literature detailing how to build your own R2D2 drone.  Who knew such a thing was possible?  My other query of the night revolved around John Williams himself, who also scored Jurassic Park.  Does Williams simply have the Midas touch, turning every movie he scores into box office gold?  Or has he also authored music for box office bombs?  I suppose I wouldn’t know if he was the genius behind the music of ‘Hotel For Dogs’.

Other

I’ve mentioned previously that I am trying to keep things in proper perspective these days.  Ever mindful of my great fortune, I am now more careful than ever not to take anything for granted, and to realize exactly how lucky and blessed I am.  This morning my attempt to rid my mind of all angst, frustration, impatience, cynicism and pessimism was put to the test when our condominium complex scheduled a property-wide fire alarm test that woke me up early (and kept me awake) until I had to leave to see my local oncologist to share with her my incredible news.  As the ear-piercing alarm startled me from the bed, and penetrated through the pillows that I had pinned to my oversized ears, I don’t think anyone would have blamed me if I cursed aloud and lamented my situation.  Instead I chose to feel privileged…privileged that my employer is so supportive to allow me to be home instead of at work during those mid-morning hours…privileged that we have a condo to be awoken in…privileged that our management company cares enough to do their jobs properly to ensure that the alarms work.  Suddenly the alarm didn’t seem so loud.  

Throughout the day I was constantly reminded of my great luck.  I chose not to be upset at the lack of food to eat in our home, because it’s through my own laziness that I didn’t get in the car (which I’m lucky to have), to drive to the store (which I’m lucky to have the physical ability to do), to replenish our kitchen with food (which I’m lucky to be able to afford).  I saw my great fortune again at the oncologist’s office when person after person excitedly (and tearfully) told me that they heard my great news, before I even had the opportunity to tell them.  I felt so cared for, and so loved (which I’m accustomed to from my friends and family), but from these people that were complete strangers to me nine months ago, their genuine support was overwhelming today.  

Once again at night my tremendous lot in life was shown to me when Jessie and I attended the Nationals game vs. the Padres at DC’s Nationals Park.  I could have been disappointed by yet another loss for the hometown Nats.  I could have wished that there was a better team visiting town tonight than the Padres.  I could have thought that $8.00 is an outrageous price for peanuts and water…well, actually I did.  But instead I realized that a few short days ago I planned to be stuck in bed tonight, nauseous from the chemo that was supposed to be administered this afternoon.  Instead I was at the ballpark, sitting next to my beautiful bride, enjoying a picture-perfect summer night in the city, and talking about how far we’ve come in the span of less than a year.  I can find the good in any situation nowadays, and I had a great day doing so today.

Other

I lived my life a certain way from September 22, 1979 through October 31, 2008.  I was subjected to certain rules growing up in a reasonably strict Catholic household, and I was properly taught right from wrong, but I made my share of poor decisions too.  Among those decisions, through the eyes that I now see the world, were decisions about my health.  I exercised infrequently, brushed my teeth just once a day (if that), and would have a midnight snack of eight Oreo cookies far too often.  From November 1, 2008 (when I woke up with a headache) through July 22, 2009 (when I made one of the biggest decisions of my lifetime), I lived entirely different than I did in my previous 29+ years.  In that span, I exercised six times a week, brushed my teeth twice a day (at minimum), and snacked on fruits and vegetables when I was hungry between the massive, healthy meals that I now eat.  

However, in the last eight and a half months, there were things that I was was forced to give up that I can now enjoy again as I mesh my two previous realities together.  I’ll still exercise (in fact, I may even train to run a marathon), eat right (as I recommend everyone does), and brush appropriately (even if that just-brushed feeling wakes me up and makes it harder for me to go to sleep at night), but I’ll also resume playing sports like basketball (because I’ll no longer have to fear a cut that won’t clot), fly on an airplane again (since my immune system will soon rebound), sit by the pool on occasion (as my orders to avoid the sun have been lifted), and have the freedom to plan things on what were formerly ‘treatment weekends’, essentially doubling the number of weekends that I’ve grown accustomed to enjoying.  Imagine if your weekend allotment suddenly jumped from 52 to 104 per year.  That is how I feel.

This, of course, only details some of the physical activities that I’m excited to resume.  It failed to delineate the new mental components of my lifestyle which I’ll delve into tomorrow.  Trust though that you won’t come across a happier individual than me these days.  I’ll take nothing for granted.  I’ll enjoy each and every one of the finer points in life.  I’ll keep things in proper perspective, and I’ll know what really matters.  I’ll live my life the right way.  More on that tomorrow, but it’s a funny thing when you realize that you’re lucky to be alive.

GBM

I thought about entitling this post ‘No Mas’, a reference to famed boxer Roberto Duran’s utterance in a superfight against Sugar Ray Leonard.  ‘No Mas’, Spanish for ‘No More’, is the route that I’ve decided to take with treatment.  However, Duran’s words were said in defeat when he couldn’t take the punishment any longer.  I thought better of making reference to that because I’m not going down in defeat like Duran.  In fact, more like Leonard, I am the new champion, with my opponent having been pummeled into submission.  Victory is mine.

If you couldn’t follow the boxing analogy, I’ll make it simple.  I have decided that I’ve won my war with GBM, and thus have declared victory.  Brian 1, GBM 0.  BAS > GBM.  The Mighty Basimus Triumphs!  However you want to say it, I’m declaring myself the victor and electing to cease treatment from this point on.  The option came, and I’ve taken it.  In my mind, further treatment for me would be as arbitrary as poisoning any other healthy individual with toxic chemotherapy drugs.  Thanks to the love and support, faith and prayer, stubbornness and undying hope of my family and friends, friends of family, and family of friends, I’m no longer in need of the Western medicine that also played an integral role in saving my life.  I’m moving on to a holistic approach to therapy now.  The drugs did their part; the rest is up to me (and Jessie).

To briefly explain how I came to my decision, a decision that has drawn rave reviews from everyone that I have spoke with (my Mom being at the top of the list), it was somewhat of a no-brainer when I really analyzed it.  I’ve said over and over through the last few months that I genuinely believe that I’m cured.  I’d cite the specific times, but that would get redundant.  The point is that I’ve known for awhile now that ‘I’ve beat it.’  So, after Dr. V. identified that if he was me that he’d cease treatment, he said something else that never left my mind.  “If you think you’ve beat it, then stop.”

Let it be said that Dr. V. is the reason that I began the study in the first place.  When I first met him last November, I entered our encounter certain of the fact that Duke wasn’t the place for me.  Something came over me in the course of that meeting though; something that told me that this was the man to put my faith in.  He had a confident way about him that reassured me that my best interests were his also.  In essence, his manner made my initial decision for me.  Eight months later, that same manner made this decision for me again.

Dr. V. explained the pros and cons of continuing with treatment.  The pros being few, and the cons being many.  He explained that 56 people have reached the point that I have reached in the study (with a ’stable’ MRI and a ‘cold’ PET scan), and that 44 people elected to cease treatment while 12 continued on.  Of the 44 that ceased, 36 remain progression free to this day.  Still stable, still cold, those 36 are my inspiration, while obviously my heart goes out to the unfortunate eight.  Of the 12 that continued with treatment, eight are progression free, while four have unfortunately advanced.  The point is though, while I’m not a huge believer in statistics (which I believe can be easily tweaked or skewed to illustrate any point), 36/44 and 8/12 are close enough to suggest that there is no evidence to suggest that either course of action is preferable at this point.  The sample size is too small, but there is certainly nothing that suggests that I’d be better off continuing with chemotherapy.  In fact, said Dr. V., continuing would surely increase my likelihood of developing long term side effects from the chemo regimen (if any indeed exist); side effects that may include, but are not limited to, leukemia.  That fact was also a key to my decision.

I was only held up by my concern that the four physicians at Duke couldn’t reach a consensus about a recommendation.  Three stood on one side, with Dr. V. on the other.  Ultimately though, he told me to seek ‘Divine Intervention’.  With all due respect to the other physicians, I feel as though divine intervention delivered Dr. James Vredenburgh to me.  

My decision has thus been made, and I’ll fully commence a whole new world of ‘normal’ tomorrow.  More on that later.  VICTORY!

GBM

I’m back at our kitchen table in Alexandria, VA, trying to digest everything that has transpired over the last day and a half.  It’s mind-boggling to me that I was here eating breakfast at the crack of dawn just yesterday.  It seems so long ago.  I am astounded that I was in a PET scan machine less than 36 hours ago, and it’s beyond belief that I woke up in Durham this morning entirely unaware as to what was about to transpire.  The fact that I now have the option (and a doctor’s recommendation) not to undergo another round of chemo on Friday is something that I’m having a hard time coming to terms with.  As much as my life has been turned upside down for the last 261 days (by my Dad’s count), could this ordeal have come to an end today?  Dr. V, who authored and engineers the protocol that I’m following, told me (among other things) the following today…

1) My MRI pictures were beautiful, and my PET scan was “cold”.  Of the options, ranging from cold to intermediate to hot, cold is the desired reading.

2) If he (Dr. V) was me, considering the great results of my scans, he wouldn’t undergo any more treatment.

3) I also have the option to continue as I’ve been doing, to conduct a regimen of just Avastin, or to drop Irinotecan from the equation and continue treatment with the esteemed duo of Avastin and Temodar.

4) The decision is mine, and only mine, and one that I have to be entirely comfortable with.

5) The other doctors at Duke, his colleagues, would have recommended today had I seen them that I continue with the study.  That fact is what is holding me up.  I wish they could have reached a consensus.  However, it is important to note that eight months ago when we first visited Duke it was on Dr. V’s recommendation that I participated in the study.  Isn’t it only appropriate that on his recommendation I conclude?

6) I have eight weeks to make my decision, though I anticipate a firm decision in the next day or two.  Still, it’s nice to have options.

As you can probably imagine, my mind is racing.  My thoughts are aflutter.  I am having an “out of body experience”, as one of my sisters noted.  Could my reality, changed forever in November, be changing again?  I’ll pray for the guidance and strength to make a decision that is as important as any I’ve ever made.

GBM