FIRST, I CURSE -- THEN, I CRY

It seems it's coming in waves.  I am long past that point and frankly, now, I'm taking all of this quite personally.  My anger consumes me.  The sorrow is palpable.

Yesterday, I learned that one of the bloggers from the UK died.  Vicki, who blogged at Stage IV and Beyond, was fondly known as Sticki Vicki in social media circles.  She was diagnosed with Stage II disease in the latter part of 2007.  It's almost seven years since her diagnosis and today, she is gone.  One more life stolen by this disease.  One more early stage patient whose disease progressed and ultimately took her life.  If you don't know Vicki, take some time to poke around her blog.  She was a fierce advocate and someone who frequently left comments on many of our blogs.

The evening before, I was utterly stunned to be told by a friend that Jude Callirgos had also died.  Exactly two months prior, Jude was at an event in Connecticut where she WAS the event.  It was a book reading and signing in a quaint New England town south of Danbury.  I remember the day of the event because I had every intention of driving up to CT.  The weather got dicey and I decided it best to err on the side of safety.  Every ounce of shit that feel from the sky from October through what feels like last week, somehow managed to turn the roads to ice.  And I stayed put, a 90 minute drive from Jude's book reading.

I know it was a huge success and the last thing I knew, Jude was in Italy sipping wine in Tuscany as she had been planning for quite some time.  I also know her trip was delayed by two days because she had to address a last minute medical issue.  It took her seven hours to rebook her airline tickets which is likely fourteen times longer than the medical procedure.  Jude was a friend to many.  Behind the scenes and despite her deteriorating health, I know she was helping others.  I know this because she helped me, using her far reaching circle of friends and her knowledge of that area of CT, to put together some information I needed.

I don't recall asking, I just recall mentioning I was going to try to get to the book reading and why the location of the venue was of interest to me.  She jumped into action.  That's just how Jude was.  I know others have shared privately how she offered to do things for them, too.  Again, it was Jude who jumped in.  "I can help with that....."  To say I am saddened doesn't even scratch the surface.  Breast Left Unsaid, Jude's book, is filled with her wry wit and dark humor.

In Jude's words,  "if I managed to reach you in some way, or my fondest wish - made you laugh - I will rest easy knowing that I recounted my story for a purpose."  Jude is resting easy.  One can't help but laugh at her reactions in some situations and her observations of others.  Jude's death, although I knew she was quite ill, came as a shock to me.  In a span of two months, she did her book event, traveled through Italy for several weeks and died.  Just like that.  I have my thoughts about "just like that" but absent any knowledge of fact, I'm going to refrain from any conjecture.  All I'm going to say is that Jude's voice and her friendship is going to be missed by so many of us.

Although Jude pokes fun at the Betty Rollins' memoir in saying "Unlike the book, I did not cry first.  Not a tear.  I broke shit."  I did cry first when I heard of Jude's death.  And then, I screamed the word FUCK at the top of my lungs.  If there was a stronger, more offensive word, I can assure you, I would have used that one instead.

Unfortunately, for me, it doesn't end there.  When I began writing, I knew nothing about blogging.  As I poked around, knowing my intention was to focus on chemobrain, I found a blog called Confessions of a Chemo Brain.   I reached out to Jaime.  She is a New Yorker, she is "part of the Sloan Kettering family in NYC" and she is Italian-American.  I could relate on all counts.  Jaime was living with Stage IV Lung Cancer.  We became friends.

She hadn't been blogging and I got worried.  I left a message under one of her posts.  She emailed me to let me know everything was fine and we became Facebook friends.  I love Facebook.  Now, not only can I stalk my kids, I can keep tabs on so many of the people I've come to cherish.  Jaime was one of those people.  In the frenzy of the past few months, I haven't been checking FB.  I definitely need to come up with a more organized system with both Facebook and Twitter.  My online life has become as disorganized as my office.

This morning, I thought about Jaime.  I went to go leave her a note.  The last thing Jaime posted on Facebook is so fitting of her humor and everything I love about her.  I laughed.

"It's gotten to the point that if a drug company introduces me to a man on tv I assume there is something wrong with his penis."

That was written on January 26th.  If my math is correct, Jaime turned 38 years old on March 5th.  Sometime after midnight, the day after her birthday, she was gone from this world.  Another cancer death.  Another piece of my heart.

First, I cried.  Or maybe I cursed.

But then, like Jude, I broke shit.


Like it?  Share it!

INFORMED CONSENT TRUMPS ALL IN HUMAN RESEARCH TRIALS

This post has been handed to me in a neatly wrapped package, including an impeccably tied ribbon.

I've been what they call "radio silent" but that doesn't mean I've lost touch with the outside world.  It simply means there may be a mess of unanswered email messages, to do lists galore buried under what I'm certain is fairly important snail mail, which is likely buried underneath some gadget or device.

The topics that have been intertwined in the package are from one story, a tragic event that happened ten years ago.  Some of what speaks to me in this horrifying story has been touched upon, or pounded at, at one time or another throughout this blog.

I've written tons of things about the importance of research.  Indeed, May is National Cancer Research Month.  Research saves lives.  Not just cancer research but research across all diseases.  We work to save lives, to improve the quality of lives, to minimize side effects which may have an effect on medication compliance.  Research leads to best medical practices using evidence based findings.  Yes, I'm a huge fan of research.

Research requires people participation.  Filling research studies is not an easy task for a number of reasons.  I could spend the entire post enumerating the reasons for the difficulties often encountered when attempting to fill a study or a trial.  I'm not on that soapbox right now.

Research involving humans requires the strictest adherence to the most stringent guidelines.  At the very top of the list, the VERY TOP - informed consent.  If this is starting to sound like a broken record, stay with me.  I'm not ranting about the women in India (for now) or issues surrounding cervical cancer screening (coming soon based upon information recently released).   At the very heart of this tragedy, is informed consent.

Dan Markingson was 26 years old.  It was 2003.  He was admitted to a Minnesota psychiatric hospital suffering from delusions and paranoia.  He believed it was necessary to murder his mother.  His involuntary admission to the hospital was based upon the evaluation of a doctor from the University of Minnesota.  The doctor noted that Dan Markingson did not possess the capacity to make decisions regarding his medication.

Read that sentence again.  A doctor noted that he did not possess the ability to make decisions regarding a psychiatric medication.  This assessment was confirmed by a clinical psychologist.  So riddle me this.  HOW was Dan Markingson enrolled in a clinical trial by the very same doctor who determined he was unable to made decisions regarding medications.  He was deemed capable of consenting to a clinical trial involving antipsychotic medications when a mere two days prior, his social worker was of the opinion that he was not capable of voluntary consent for treatment with an already in use antipsychotic.

In the background?  Dan's mother.  Protesting the enrollment in any clinical trial.  The legal system entered the fray, too. Those are two separate issues that I'm choosing not to discuss at this point.  Family involvement and what is referred to as HIPAA Handcuffs and Court Ordered Treatment.  These are highly charged issues and until I can elucidate my opinion intelligently, I'm going to refrain from doing anything but mention that they were, indeed, issues.  I want to do my homework. Listen to all sides.  Hear the experiences of others.  And then formulate my own opinion.  I know how I'm leaning, but I need more information.

Informed consent?  Absolutely not.  In the months that followed, Dan's mother tried in vain to communicate with the team involved in the drug trial.  Her son was deteriorating and not one of her calls was returned.

Dan committed suicide less than six months after being enrolled in the trial.

His story has been written about in a number of places in recent days which is how I came to learn about the whole thing. Scientific American does a terrific job of outlining the entire sequence of events.  I'd highly recommend reading Judy Stone's article.  The University of Minnesota is under scrutiny as discussed in this blog from a campus publication.  The university response was published in the same blog, earlier today.

I haven't had a chance to read the response but having had intimate involvement with an involuntary psychiatric hold almost a year ago, I'm falling on the side of cover up and death in vain.

I'm not a conspiracy theorist, I'm not an armchair activist.  I'm just a mom, trying to put myself into the shoes of another mom whose cries fell on deaf ears.

The time for reform is NOW.   Start by encouraging your representatives to support HR3717.  You will note a "Support These Bills" tab in the upper banner on the right side of this blog.  The page is a work in progress.  HR3717 is an immediate necessity.  May, in additional to National Cancer Research Month is also Mental Health Awareness Month.  This is an awareness campaign that we DO need.  Lots of awareness and tons of education.

As for the shoddy clinical trial consent, that doesn't bode well for any of us regardless of which community on whose behalf we advocate.


Like it?  Share it!

THANK YOU @HEALTHLINE - 3 YRS IN A ROW!

I'm humbled.  For the third year in a row, Healthline named this blog to their list of top breast cancer blogs.  This was completely unexpected, particularly since I've neglected this blog in my efforts to reclaim some semblance of my pre-chemobrain life.

I'm still disorganized.  I still can't multi-task.  I struggle with numbers.  Reading novels?  That's still out of the question, too. But I'm trying.

Thank you to the folks at Healthline for including this blog on their list.  I am especially grateful for their mention of my baby steps into the land of mental illness advocacy in their write up.

I'm clawing my way back.  It's taking me a bit longer than I expected but then, the one thing I have learned over these past few years: if I don't roll with the punches, I will be knocked out of the game.  So, I'm rolling.  And I'm grateful that I'm able to roll.  

Healthline

Like it?  Share it!