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Archive for May, 2009

An Emotional Week

May 31st, 2009

Perhaps I’m feeling the effects of an emotional week, as my days on Saturday and Sunday were filled mostly with sleep.  I had grand plans, I suppose, as I truly felt better post-IV this time than after any of my previous four or five infusions, but those plans were undermined by the overwhleming urge to sleep both yesterday and today.  After waking up in the PM hours on both weekend days, I could hardly stay awake throughout the afternoon before naptime called my name again.  Hopefully I’m now caught up - tomorrow will tell - but the bed is calling me yet again.  Good night.

GBM

See For Yourself

May 30th, 2009

 

Tree pose on Wii Yoga

Tree pose on Wii Yoga

 

It's coming back...

It's coming back...

 

My outdoor barber shop in NC

My outdoor barber shop in NC

 

5-27 on the left, 4-1 on the right

5/27 on the left, 4/1 on the right

 

Celebrating the MRI over ice cream

Celebrating the MRI over ice cream

 

Ice cream for all

Ice cream for all

 

Me and my Marinol

Me and my Marinol

 

Munching after Marinol

Munching after Marinol

Other

I’m Finally Living Up To My ‘Pot’ential

May 29th, 2009

If your questions paralleled my curiosity of what today would be like, I’m almost reluctant to open the floor to questions.  However, medical marijuana - or Marinol, truly - is a fascinating little thing, and I don’t want anybody to be confused about the situation.  

I can’t give an account of my day with guaranteed accuracy and proper attribution to what caused what because we tried several different remedies to combat nausea on Friday, the sum of it though is that it worked near flawlessly.  Was it the ginger tea that I downed by the cup for the past few nights to prepare?  The Zofran/Ativan that I ingested orally with breakfast this morning to get ahead of the nausea?  The Aloxi that I was also pre-medicated with today; a longer lasting anti-emetic?  Or could it have been the Marinol?  

I had a 2.5 mg tablet shortly before chemo started, and another pill of the same size an hour after chemo began.  All I know is that I fell asleep eating popcorn, and woke up just in time at the end of the infusion to ask if there was any more popcorn left.  All things considered, as chemo treatments go (forever a horror that I wouldn’t wish on anyone), today wasn’t nearly as bad as it could have been. 

The days ahead that might make me nauseated should prove to be better times to really evaluate the joys of Marinol.  I’ll be responsible, of course, but don’t I owe it to the curious medical community to report my findings?  I am in a ’study’ after all.  My dear Mom passed along the tidbits below about, Marinol.  Her status as a Mom first, but also as a pharmacist, make her thoughts on the matter particularly interesting.

Marinol “is used to treat nausea and vomiting caused by cancer treatment, especially for those patients who do not respond to other medicines. This medicine is also used to increase appetite in AIDS patients.”  AIDS patients too?  Perhaps that’s why the infectious disease specialist that came to examine/annoy me in the emergency room in November told me “not to worry yet, it might just be HIV”.
 
I’m also supposed make my health care provider aware if I have any of these conditions:
  • a history of drug or alcohol abuse (negative)
  • heart disease, including angina or irregular heart rate (also negative)
  • high or low blood pressure (I’m just right)
  • dizziness or fainting spells on standing (not applicable) 
  • mental health problems like schizophrenia, mania or depression (I may not be ‘all there’ upstairs, but I hardly see it as a problem)
  • an unusual or allergic reaction to dronabinol, marijuana, sesame oil, other medicines, foods, dyes, or preservatives (not yet, hopefully not ever)
  • pregnant or trying to get pregnant (not that I know of)
  • breast-feeding (too many comments to choose just one) 

I’ve also been warned…

…”This medicine is only for you. Do not share this medicine with others. Selling or giving away this medicine is dangerous and against the law.”  Sorry friends.

…”If you miss a dose, take it as soon as you can.”  Shouldn’t be a problem.

…”The first time you take this medicine or have an increase in dose make sure there is a responsible person nearby. You may experience mood changes, easy laughter, or other changes in behavior.”  Thanks for the warning.

…”Keep out of the reach of children. This medicine can be abused. Keep your medicine in a safe place to protect it from theft.”  It’s exciting to be dangerous. 

…”Do not drive, use machinery, or do anything that needs mental alertness.”  Nothing planned.

GBM

Waiting In Anticipation

May 28th, 2009

As I always am, I’ll be honest about my feelings ahead of tomorrow’s infusion.  Friday marks the start of Cycle Five in the six-cycle chemotherapy regimen that I am currently enrolled in.  With two infusions per cycle, tomorrow will be my ninth treatment of Irinotecan and Avastin.  I genuinely looked forward to the first seven treatments - knowing full well that the toxic drugs that I’m infused with are the same drugs that are saving my life.  Life-saving drugs are easy to look forward to.  Something changed before my eighth infusion though, however I can’t exactly put my finger on what or why.  I just recall waking up that morning with a nauseous feeling, and I wasn’t at all excited about treatment that day.  Accordingly, as I let my mental guard down, I struggled with the eighth treatment.  I’m proud to report tonight that I am anxiously awaiting tomorrow’s treatment, and in complete, ’blunt’ honesty, my anxiousness is entirely related to my curiosity at how I’ll fare with the new anti-nausea treatment that I’ve been prescribed.  At the very least, this promises to be an amusing tale.  Did the gladiators that came before Bassimus in ancient Rome have Marinol on their side?

GBM

The ‘High’lights

May 28th, 2009

I have several things to elaborate on tonight, though I am mindful of what I suspect will be the most popular topic.  Thus, I’ll save the best for last.

It’s nearing midnight as I write this, and I can hardly believe that my MRI this morning was in fact this morning.  I am familiar with the old adage that ‘time flies when you’re having fun’, but despite the fact that I had more than my fair share of fun today, time certainly didn’t fly.  It seems like days ago when I was crammed into the noisy MRI machine at 8:00 am this morning.

As I already proudly reported, the results of my MRI were “as good as ever” - those being the words of a trusted medical professional.  I’m looking forward to hearing those words many more times over the next 50+ plus years of my great life.  We went to Duke seeking the reassurance that I knew the MRI would deliver, and as always, Duke did not disappoint.

I made reference earlier to my new friends Jeff and Sherry, both of whom I’ve spent considerable time thinking about today.  I’m cognizant of patient privacy issues, so I’ll be careful not to divulge anything personal.  I just want them both to know how truly flattered I was that they wanted to meet me.  I spend my working days proudly working ‘behind the scenes’, so I’m just not an individual that people want to meet.  Evidently that wasn’t true this morning.  How could I turn down the request?  I’m touched that this blog has seemingly reached so many - though I couldn’t quite grasp the connection between Jeff and Sherry and myself.  It was plain to see though that these folks were good people.  As I’ll detail in the last paragraph, Jeff has a lot to look forward to, and is lucky to have a doting wife like Sherry.  I know the feeling.

My sinus issue that I alluded to is one that has lingered for months, but I didn’t quite grasp the severity of it until today.  I’ve noted that I’ve had a cold for four or five months now - a cold that I couldn’t quite kick, but attributed it to my compromised immune system.  I figured that with all else that’s going on, a cold is really the least of my concerns.  Thus, I generally ignored the symptoms - the sleepless nights spent coughing, the sinus pressure/pain, and other discomforts associated with the common cold - and was reluctant to take any medication for it because I’m quite frankly sick of drugs (until now).  As a result though, I developed what they called a ‘chronic sinus infection’, causing the membrane around my sinuses to turn from what should be a tissue-paper like substance to a thick, hardened mess that will now take 15 days of antibiotics to clear up.  Lesson learned.

I failed to mention it previously, but we also had our questions answered about the strange pupil dilation issue that I experienced.  As it was explained to us today, the optic nerves that run through the brain are thin and very sensitive, and can be easily bothered by any swelling or pressure.  I’ve had some swelling and pressure to deal with in the last six or seven months since my surgery, and my sensitive optic nerves took notice.  I’m at no risk of damage though - just at risk of looking spooky from time to time - so another scare was averted there.

Now, about what many have wondered about, and called, emailed or text messaged me to inquire…medicinal marijuana.  You may be disappointed to learn that the prescription that I was issued is actually for a THC syndicate - Marinol - which is essentially a pill containing the active chemical in ’street weed’.  I wasn’t actually handed a Ziploc bag of the leafy green stuff and requisite paraphernalia.  I was told though that the good doctor who authored and engineers the protocol that I’m on actually recommends traditional marijuana over Marinol as the better way to combat the nausea (and anticipatory nausea) that comes with my biweekly IVs.  Who am I to violate the doctor’s orders?  The entire situation created countless memories, particularly my Mom’s warnings about the ’side effects’ of marijuana.  Really, Mom?  “Extreme loopiness”.  “Disorientation”.  I never would have guessed.  My Mom eventually came to embrace the idea though…anything that will help her baby boy feel better.  My Dad was amusingly onboard from the start.  They did both wonder how this news will be greeted by the masses.  By work?  By the church?  Time will tell, I suppose.  Remember though, this is my strict adherence to the doctor’s orders.  I’ve become quite adept at doing what I’m told.  As ‘Favorite Uncle’ indicated, the ‘high’lights of this should be a real joy to share.

GBM

Something To Look Forward To…

May 27th, 2009

Please check back later for highlights of today, including details on…

1) My new friends Jeff and Sherry, who heard I was here today and specifically asked to meet me.  I was honored.

2) The “chronic” sinus problem that I’ve developed, but for which I will finally get some relief.

3) Medicinal marijuana.  Yes, it’s been prescribed!

GBM

“As Good As Ever”

May 27th, 2009

The great news just came. My MRI looks “as good as ever”. Quite obviously, we couldn’t be any more thrilled. There will of course be more to come later…

GBM

Counting Down To 8:00 AM

May 26th, 2009

We’re holed up in a Durham hotel room, anxiously awaiting tomorrow morning.  I’m not nervous, nor should I be, but I am excited for the always reassuring good news that comes with my every-eight-weeks MRI.  We’ll check-in at the MRI mobile unit at 7:30 am on Wednesday morning, and I expect to hear the results sometime before noon.  I’ll be sure to post an update as soon as the circumstances permit, but armed with a bevy of questions to ask (and an expert interrogator for a Mom in tow), I don’t plan on tomorrow’s visit being of the in-and-out variety.  Stay tuned for details.

GBM

I Could Get Used To This

May 25th, 2009

Are you getting tired of reading about this?  I certainly hope not, because I’m not yet tired of writing about it, and I’m far from tired about living it.  I reveled today in another glorious day in North Carolina.  It was much like yesterday, though somehow better than perfect.  More eating, more sleeping, more golfing, more walking…truly, I could get used to this lifestyle quite easily.  Unfortunately we’ll have to depart for Duke tomorrow afternoon, as we’re expected in Durham tomorrow night.  I’ll try to compact another incredible day into an abbreviated morning/early afternoon tomorrow, and I fully expect that Wednesday will be the best day yet…but for a different reason entirely.  Join me.

Other

Another Perfect Day

May 24th, 2009

In between eating and sleeping today I found time for two other activities. I enjoyed my ‘09 debut on the golf course this afternoon, and we went for a walk on the beach again tonight - a daily staple of the routine now. My golf game was predictably novice, though the experience was a true delight. As for my biggest worries of the day…I’m not sure if it was trying to keep my new golf shoes clean, or thinking of where we’ll live if we win Wednesday’s $222 million Powerball drawing. How can I possibly complain?

Other