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The last day of November has brought a cold rain to the Eastern seaboard — a rain that harkened my memory to the Guns N’ Roses hit November Rain.

So never mind the darkness
We still can find a way
‘Cause nothin’ lasts forever
Even cold November rain

Like Axl Rose first bellowed out 16 years ago, nothin’ lasts forever.  In my situation, what won’t last forever is this cavernous feeling of what-should-we-do?  As we drive South to Duke tomorrow morning for our two-day consultation, we’ll move closer to the most important decision of my life.

It’s noteworthy to me that my appointment at Duke falls on the first day of December, while the last day that I believed I was perfectly healthy was the final day of October.  What was lost in the middle was the long month of November – a month that in actuality is shorter than most, but unquestionably felt like the longest month of my existence.

A lot changed for me in November, particularly my perspective on things.  As we hung out in Baltimore on Thursday night, with our new car parked on the road just outside of Cheryl’s house, something or someone put an unsightly dent and scratch in the back passenger-side door.  I can all but guarantee that had that very same thing happened in October, I would have cursed like an inmate and vowed to never again return to Charm City.  Full disclosure: I did vow to never again go back to Baltimore, though I was kidding of course. However, I didn’t curse, didn’t cry, and haven’t given it much of a thought since.  It just doesn’t seem all that important.

My point is this…save your worry and your consternation for what really matters.  Your family…your friends…your health…your job…but certainly not a one-inch mark in a vehicle that still functions as well as it did on the day we bought it, and not a five-turnover performance by the Patriots today that was hardly enjoyable to watch, but that nevertheless will have absolutely zero impact on the rest of my life.  It just isn’t all that important.

Other

Warning: This link features the most graphically nauseating view at an unwelcome guest that somehow made its way into a woman’s brain.  It may not be suitable for younger viewers, or for those of you that are anything like me. 

 Two bits of caution for today:

1) Evidently it’s not safe to eat raw pork. 

2) This video is work safe, but make sure that the trash can is nearby.  

More to come later, but this video couldn’t wait. 

Doctor Operating on Woman’s Brain ‘Tumor’ Finds Live Worm Instead

Other

Two days removed from my last appointment at Johns Hopkins – and with two days until I meet with the doctors at Duke – nothing has changed with my medical situation, nor do I expect that anything will change until Monday at the earliest.

Since I last made any headway into my fight with glioblastoma, I attended the Wizards game on Thursday night with nine of my family members, enjoyed our postponed Thanksgiving on Friday night instead of the traditional Thursday feast, and drove back-and-forth from Alexandria, VA to Baltimore, MD twice so that I could spend time with my family on both Friday and Saturday at my sister’s home in Baltimore, while still enjoying the comfort of our own condo and the far left quarter of the bed that Jessie doesn’t toss, turn and kick in while we sleep at night.

I don’t intend for this blog to be a diary, and I’m reasonably sure that you’re not interested in every last detail of my daily existence that doesn’t revolve around my battle with GBM.  Today however, I am feeling as normal as I have since my surgery just over three weeks ago.  Of course though, ‘normal’ is definitely a relative term.

Today’s normalcy included watching Rudy for the 47th time, eating yesterday’s leftovers, and generally doing nothing which was a welcome respite from the last 23 days of reading, re-reading, and soliciting opinions from the most renowned cancer researchers in the world – who remarkably can’t seem to agree on what I should do to win my fight.

I imagine that for the rest of the night tonight – as well as the duration of the day tomorrow – I’ll probably pass the time watching football on TV and trying to return many of the ‘get well soon’ phone calls that I’ve been unable to so far.

If it interests you though, this article was authored by one of the top brain cancer researchers at Duke – a man that I’m hopeful to meet in person on Monday.  As you’ll read, he’s aggressive and slightly controversial.  A man who’s philosophy reminds me of my own. 

http://www.virtualtrials.com/pdf/Friedman.pdf

Other

I have a few more things to add to my list of which to be thankful for today…the least of which are material possessions that just don’t strike me as being all that important.  I should have mentioned Holliston High School, Syracuse University, those at work who are taking care of everything so that I can be focused on my fight, Framingham Union Hospital (where I was born and my Mom still works), Van Leer/Proma (my Dad’s former employer), and all of the friends of my family that I wish I knew better than I do, but I’m nevertheless so thankful for all of your love and prayers.

I am spending the day today at my older sister’s townhouse in Baltimore, which I’ll have you know is very comfortable and extremely warm…and if it weren’t for her hospitality (and that of her husband Phil), I would have had to welcome the 10 people that will feast with us this afternoon into my 800 square feet of the world.  For those of you that know me well, I’m not that welcoming either.  I wish I was, I really do…but I didn’t choose to have this awful (though undiagnosed) case of OCD.  It chose to afflict me.

Anyway, we’ll eat at 5:00ish this afternoon after Cheryl returns home from work.  My Mom is busy cooking, I’m busy blogging, and some of the rest of the crew are about to walk a few blocks to a specialty pie place that Denise (the elder of my two younger sisters) is obsessed with.

Saturday and Sunday won’t bring much action as far as the GBM fight is concerned.  In fact, I asked a doctor at Johns Hopkins last week if seven days a week of radiation would be more effective than the standard five-day-per-week treatment plan, and the honest answer was “probably not, but when would they golf if it was.”

My first of two appointments at Duke next week is scheduled for 2:00 pm on Monday afternoon.  Mapquest estimates that Duke is about a five-hour drive from Alexandria, VA so we’ll make the ride early Monday morning instead of late on Sunday night when the rest of the Thanksgiving-celebrating population returns home from wherever they spent the long weekend.

My sense is that the cancer researchers at Duke are somewhat of controversial figures in the GBM battle. They have a well-deserved reputation as experts in the field, but they also research and argue for the use of as-yet-to-be approved experimental drugs that the majority of the rest of the cancer-fighting world has been slow to embrace because of the lack of data that suggests any efficacy in the medications.  After hearing from both NIH and Johns Hopkins that the standard care of radiation and chemotherapy is their preferred route for me to take, it will be interesting to see how different of a course Duke suggests.  Time will tell.  In the meantime, I’ll enjoy a feast in a few hours to try to pack on the pounds before radiation and chemo take their toll on me next week.

Enjoy the leftovers today, and the Black Friday sales if that’s your kind of thing.  Be thankful for what really matters because those are the kinds of things that would really affect you if you had to do without.  Keep your loved ones in mind always because you just never know when a simple headache can change your world without notice.  Finally, keep clicking on those chemotherapy ads to the right!  The drug companies pay the best.

Other

I have much to be thankful for today, including but not limited to…

…Jessie, my family, and my friends

…29 years of great health, until now

…the marvel of modern medicine

…Washington Sports & Entertainment, and DKE

…blogs and comments

…the rights afforded to me by our country

…the privileges that I try not to take for granted

…sports, TV and other diversions from reality

…the power of positive thinking

…that I won’t have to be reminded that ‘Thanksgiving is Thursday’ until next year

…all of your thoughts and prayers

I’ve heard that it’s Thanksgiving today.  Enjoy it everyone.  I’m not sure what’s so special about tomorrow, other than the early morning sales (though someone will have to explain to me why the sales can’t just start at a normal hour), but evidently nobody is working tomorrow either.  So have a great today, tomorrow, and weekend after that.  Personally, I can’t wait until everyone returns to work on Monday.  Well, not everyone I suppose, but certainly those in the business of curing cancer.  We need you back at work!

Other

We had an interesting day with our new friends at Johns Hopkins. I’m not sure that ‘encouraging’ is the most appropriate word for it, but it certainly wasn’t ‘discouraging’.  Maybe ‘reassuring’ is the best term.

The doctor that we met with at length today at Hopkins echoed the sentiments of the researcher at NIH that we met with last Friday.  In short, Hopkins and NIH are in agreement that if they were me they’d elect the standard form of treatment for GBMs.  The standard treatment and current “gold standard” is a combination of radiation and chemotherapy, with the chemotherapy coming in the form of the orally ingested drug Temodar.  Temodar, which gained FDA approval for use in GBM patients in 2005, is somewhat of a wonder drug in the fight against this form of brain cancer.  We were initially told that radiation and chemotherapy alone haven’t been successful in defeating this disease, though I’m now wondering if that chemotherapy reference was to the pre-Temodar days.  In the three years since it gained FDA approval, all signs point to the drug being an extremely effective player in the game.  The question remains though whether radiation and Temodar can defeat GBM in a two-on-one game, or if a third player needs to be added to the team.  At this point, NIH and Johns Hopkins are hopeful that the answer to that question is ‘no’.  We know that the aggressive researchers at Duke will surely sing a different story next week.  Ultimately we’ll have made a potentially life-changing decision at this time next week.  As I sit here tonight, I can’t even guess which way we’ll go.

Our other experiences at Johns Hopkins today were pleasant for the most part.  Traffic wasn’t the greatest on the way up there, but it certainly could have been much worse.  The facility is relatively close to Baltimore’s Inner Harbor area, though I wouldn’t want to walk between the two.  Aside from our slight run-in with the parking staff, the personnel at Hopkins were pleasant and helpful.  The facility was clean and hi-tech to be sure, all the way down to the fancy ID card that I was given to facilitate check-in at future visits. They even had a ‘hostess’ on hand to point us to a waiting area where we sat until I was called.

I’ve become a true professional at having my vital signs checked as well, and I’m remarkably consistent.  My blood pressure, heart rate and temperature all come back at nearly the same levels every time.  Low, slow and cold.  They tell me that that’s good.  I guess I have no choice but to believe them.

GBM

…Brad.  Not only did Brad hit the proverbial nail squarely on the head with his guess of 168 lbs., but he also was the first one to wager a guess.  Congrats Brad, though I think you were at an advantage having seen me so recently, and considering the fact that we lived together for two years.  At any rate, it was an impressive guess. 

I weighed in at a robust 168 lbs. yesterday; six full pounds less than I weighed last week.  However, I did get confirmation from eye witnesses that I was wearing not only my shoes but my winter coat as well at the first weigh-in, so while 168 lbs. is officially what I weigh, I haven’t lost six pounds in the last week.  At the rate that I’ve been eating, I would have guessed that I’ve gained weight…though now we’ll never know.

As I write this at 11:45 am on Wednesday morning, I’m currently enjoying a breakfast/lunch combo before I get on the road to head to Johns Hopkins.  On the way to the ‘bank’ this morning, traffic was very light.  On the way home however, 495 (the four-lane highway that circles DC) resembled the parking lot that it usually is.  It was as if everybody had the same idea…’we should wait until the morning rush ends and then hit the roads around midday when the roads clear up.’  If I was traveling tonight for the holiday (I hear Thanksgiving is tomorrow), I think I’d leave at the peak of the usual evening rush.  If everybody is going to steer clear of the roads at the busiest times, then suddenly the busy times aren’t so busy after all.

We’ve leave soon for Baltimore and the Hopkins’ consultation.  I’m expecting the worst of the roads, but I’ll remain hopeful for the best.  After my consultation at JHU, traffic will dictate the rest of my evening.  We’ll either head home immediately if the roads indicate that we’ll have a reasonably stress-free ride, or else we’ll enjoy dinner at my older sister’s townhouse by the ballparks in Baltimore.  Hopefully she’ll turn on the heat for once!

GBM

Today — for the second day in a row — I was wrong.  You’ll recall that yesterday I learned that the Hannibal Lecter-like mask that I was imagining would protect my face during radiation was in reality a Jason-like mask that would restrict my head from moving during the treatments.  Strike One.  Then today, after mentioning yesterday that I would have to endure a day of lab work and blood testing, it turned out that my arm didn’t see any needles today.  I thought I was kidding when I mentioned that the needles and syringes hide from me now.  Maybe I wasn’t kidding after all.  More likely though, my medical oncologist decided that with my radiation and chemotherapy now postponed until next Wednesday at the earliest after I return from my two-day visit to Duke, it wouldn’t give an accurate sense of what my ‘levels’ are before treatment if we tested those levels more than a week in advance. 

(UPDATE: Jessie just brought to my attention that I failed to explain my two-day appointment with Duke next week.  After our promising conversations with a pair of Duke doctors last night, we were called at 9:02 this morning by their office personnel who were ready to finalize our appointment.  I have a 2:30pm appointment on Monday, December 1st and an 8:00 am appointment the following day.  Victory at last.)

So, while I did have the opportunity to once again pepper the oncologist with questions today, little else came out of the meeting.  They did weigh me though, and despite my insistence that I had my shoes on during my first weigh-in last week, they made me remove my shoes today.  Not surprisingly, I weighed in lighter than I expected.  How much lighter was a surprise though.  Anyone care to guess what I tipped the scales at?

Tomorrow promises to be yet another enlightening and fascinating day.  After some debate this afternoon between Jessie and I if I should fully disclose on this blog what I’m doing tomorrow, I decided that I should. I think a blogger is nothing without his/her credibility.  So, to end the suspense, we’ll be visiting a sperm bank tomorrow morning at 9:30.  If you wondering what my family (and more specifically, my parents) are thinking after reading that, I can answer that for you.  While my Mom might be blushing, my Dad is most certainly smiling.  They were pulling for it (not so secretly) all along.  In truth, nobody is sure that this step is even necessary.  Preliminary testing in laboratory animals did not give researchers any indication that Temodar (the chemotherapy drug that I’ll be taking) causes sterility.  However, when you come from a big family like mine and your brother-less Dad happens to mention that he’s the oldest living Sereno in our family tree, you don’t really want to take any chances.  I probably won’t go into much detail about what actually goes down at the sperm bank though.  This is supposed to be a family-blog.

I’ll also spend much of my day tomorrow at a consultation at Johns Hopkins.  I’ve mentioned before that NIH and Duke are consistently mentioned as the top two institutions leading the charge against brain cancer. Johns Hopkins deserves mention in that group as well.  While I’m not excited about battling the day-before-Thanksgiving traffic on I-95 as we crawl North to Baltimore, tomorrow is the only day that we could make it to Hopkins.  We’re reminded dozens of times per day now that “Thanksgiving is Thursday, and we’ll be closed on Friday too.”  Thanks for the reminder folks.  Evidently I chose a bad time to get brain cancer! 

The rest of the night tonight should be relatively quiet.  I’ll watch the Wizards welcome the Golden State Warriors to Verizon Center, as the Wiz try to make a winner out of interim Head Coach Ed Tapscott in his debut tonight.  Best wishes to Eddie Jordan too – a man that treated me with nothing but class and respect at all times, and for whom I wish nothing but the best.

GBM

Alas, mighty Duke has weighed in.  Though we’ve yet to actually finalize an appointment with the Blue Devil Doctors, both Jessica and I had lengthy conversations with Duke researchers tonight.  First, Jessica reached the Top Doc of one of the protocols that Duke currently offers.  A short time thereafter, I enjoyed a conversation with a different doctor that touted two additional studies that they’re currently undergoing. One of the studies would require a procedure in which I’d undergo another surgery; a surgery that would place a catheter into the cavity created in my brain by the now absent tumor.  It would also require me to stay at Duke for a period of up to 10 weeks, a challenge to be sure for a guy that actually misses work right now.  The other study would involve visiting Duke once every 6-8 weeks, but would allow me to remain in the DC area for treatment that my local oncologist and radiologist would dole out based on Duke’s protocols.

Decisions, decision, decisions.

At this time last night we fretted about the possibility that we’d never hear from Duke.  Tonight we fret about which study to participate in if both are presented next week as reasonable and viable options.  It’s been a worrisome month of November for the Serenos to date, but certainly tonight’s worry beats that of a night ago.

Tomorrow will bring another meeting with my medical oncologist, though not for a chemo treatment quite yet, but for lab work and blood testing that will establish my levels prior to treatment.  You may recall that I grew up as a squeamish kid.  If not, well, I tried to give blood once and fainted when they pricked my ear to check my iron.  Times change my friends.  I overheard a couple of needles and syringes talking today about how they’re now scared of me!

With a long day behind us, but another on the horizon, bedtime calls.  Stay tuned tomorrow for all of the details.

GBM

It’s currently 1:00 pm on Monday afternoon, and we’re at a bit of an impasse with our progress today. We’ve had a busy day thus far…including the mask fitting that I alluded to yesterday and dozens of phone calls so far this morning. 

The mask fitting was an interesting experience.  It wasn’t Hannibal Lecter-like at all, though his mask looked more comfortable.  It was more like a Jason mask, but with bigger holes in the face area and no eye holes.  I was wrong about the mask’s purpose too.  It’s not a protective mask, but a restrictive mask designed to keep my head absolutely still.  After the mask was fitted to my head – a process that involved them treating me like human paper mache – I wore the mask for 15-20 minutes while a CT scan was done.  The CT scan will help the doseologists (yes, I didn’t know that was a profession either) deem the appropriate intensity of the waves that will beamed into my head, and the most accurate angles (within 2 millimeters) at which to fire the beams.  While wearing the mask I have to keep my eyes and mouth completely closed, while breathing through my nose.  If you have 15-20 minutes to spare later, give it a try.  Lie on your back with your feet rubber-banded together, remaining motionless with your arms across your chest, and your head immobilized.  Oh, and don’t cough or sneeze. 

Me and my CT machine

Our phone calls today involved the set-up of an appointment for Wednesday of this week with the researchers at Johns Hopkins, a back-and-forth conversation with my insurance specialists, two separate phone calls to the medical oncologists office, a lengthy discussion with a clinical trial representative (www.glassarttrial.com), a chat with an oncologist at the Leahy Clinic and a neurosurgeon in New York, and yet another call to Duke.  I even resorted to calling the beeper of the head honcho at Duke, though not surprisingly, he hasn’t called back yet.  Later on today I’ll call on the help of all of you that have offered your assistance in getting me an appointment at Duke.  I don’t want to appear desperate, but if it looks like a rat and smells like a rat…

The rest of my day today will be spent waiting for callbacks…with a trip to the bank in between.  If you’re waiting on us to cash a check that you may have sent our way, today may be the day.  Thanks for your patience.

GBM