Health Monitor Magazine focuses on melanoma!!!

The folks from Health Monitor magazine contacted me a while back asking if I was willing to be interviewed for their publication (along with some other amazing folks dealing with melanoma, too)...an in-office magazine that patients can pick up at their doctor's offices.  Each magazine focuses on one disease process or another and in the past they have addressed diabetes, living with cancer, arthritis, eye care, etc.  For this issue, they wanted to focus on melanoma!!!  With some trepidation I agreed and an editor sent me a panel of questions that I could respond to as a start.  Most were the usual stuff.  What happened? How did you find out you had the disease?  What treatments have you had?  But, the questions that made me really think were these:  Was your diagnosis of melanoma a silver lining for which you are thankful?  and...  Are you a different person now than you were before your diagnosis? 

Well....  Hmmm.... To the first question, the answer is very easy.  HELL NO!!! I am NOT one of those people who will tell you they are soooo thankful that they had cancer.  But....that seemed to need an explanation.  As to whether I was changed because of my diagnosis, I really, really wanted to say, "NO!!  Absolutely not!"  Yet, was that the truth? I thought about it for several weeks.  I spoke with friends and family.  Tammy B said it best, "No.  You're not the same person you were before.  Anybody who agrees to have their head zapped and go through the things you have been through is certainly changed.  And that's not a bad thing."  I wrote the essay below in answer to the questions I was sent.  I wasn't sure it would be anything that anybody, much less the editor, would be interested in.  But, I decided to be REAL!!  To my amazement, they liked it.  So much so that I was asked to be on the cover.  What appears in print is a much more condensed version,  as I fully expected it would be.  A nurse at work put the collage above together and sent it to me.  My peeps saw the publication before I did, since my office had subscribed and got their copies on a day I was off!  It actually surprised me that my blog title, chosen so many years ago, echo's so perfectly what I feel now, looking back...and forward.  Here is the essay....

Chaotically Precise:  Life, Love, and almost 12 years with Melanoma

Melanoma is a sneaky beast.  Symptoms caused by its intrusion are often nonexistent until the victim is dealing with significant brain or other internal metastasis.  Even external skin lesions can seem small and innocuous.  They are not always black and fierce looking!   Sometimes there is no “primary” lesion at all.

My melanoma journey began in 2003, when my husband agreed that a small nevus on my back had changed.  I visited a local dermatologist.  The lesion needed to go.  He called me himself, sooner than he’d said he would, to tell me the pathology report confirmed melanoma. We were not surprised.  I am grateful to this day that he made the call, rather than waste my time with another appointment or leave that uncomfortable chore to his office nurse.  

To say that I was not surprised does not mean that I was not hysterical…on the inside.  I was only 39! My kids were just 10 and 12 in the throes of middle school!  After 19 years as a pediatric nurse, I was fulfilling my dream of gaining my masters and pediatric nurse practitioner certification at the University of Alabama at Birmingham despite the 6 hour round trip twice weekly.  With family, work and study…I did not have time for this!!

I didn’t have time to be hysterical either. I needed to find a surgeon for resection with appropriate margins and node biopsy.  Despite a good rep and supposed expertise in oncology surgery, I managed to pick a complete jerk.  To my concern over the diagnosis of melanoma he replied, “Oh, you’re much more likely to die in a car wreck.” To my desire for a sentinel node biopsy, “You don’t need that for this lesion.”  I pushed and made it happen.  And, yes.  I did need it, since one of the three sentinel nodes that lit up in my right axilla proved positive for melanoma.  

In melanoma world, things can get murky fast.  To do or not to do sentinel node biopsy followed by the removal of nodes in the area if the sentinel node is positive remains controversial, especially for thin lesions like mine.   My lesion measured only 0.61 mm Breslow thickness, Clark level IV, but was not ulcerated.  Older data notes that for lesions measuring 1mm or smaller, the chance of finding a positive node is 5% or less.  More recent studies found 18% of such patients had positive sentinel nodes and determined that biopsy was even more important for thin lesions with the additional risk factors of ulceration, nodular growth, mitosis, regression, or patient age less than 40. 

Having had all of the insensitive surgeon I could take, when the path report for the sentinel node was positive, I sought a truly kind and brilliant local surgeon to provide the complete lymphadenectomy indicated due to the positive node.  Controversy reigns regarding complete lymphadenectomy as well, since we know patients can still develop melanoma at other sites after the procedure and there is the risk of swelling in the adjacent limb secondary to lymphedema.  However, new data demonstrates improved survival rates for patients who choose the procedure. 

I had sixteen additional nodes removed, none of which were positive.  I worked hard to recover full function and range of motion to my right arm with exercises recommended to breast cancer patients.  I have been lucky to have never developed lymphedema.  

Next stop, oncologist.  He was an incredibly sweet man who very sadly informed me that HE felt devastated whenever he had to take care of patients with renal cell carcinoma or melanoma.  (Years later, Dr. Weber also said: “Melanoma is the kind of tumor that gives cancer a bad name!”)  My local onc begged me to do a year of interferon.  When I noted the sad facts related to interferon’s lack of tangible success in prolonging life or preventing further disease, he replied with tears in his eyes, “But you’re so young, I just can’t stand it for you to do nothing.”  His dismay and horror at my condition were most disconcerting and uncomfortable, but in 2003, there really was nothing else to offer.  I decided to “watch and wait” as the rest of my body including my brain was clear on scans.

What was I to do with the rest of my life???  I knew I might be lucky and be done with melanoma or those nasty cells that had already proved they had traveled to my lymph node might still be floating around, lurking and ugly.  My husband and I had hard and truthful talks with the kids, family and friends.  I met with my professors.  They allowed me to take an incomplete and finish remaining course work, along with already scheduled courses, the following semester.  I am forever grateful for their help.  I graduated in 2005.

Despite dermatology exams every 3 months, between visits in 2007, a strange, dark, tiny, raised spot developed, seemingly overnight, on the inner aspect of my left arm.  I knew it was melanoma.  Nothing else grew that fast and looked that ugly.  My dedicated derm removed it and called again with the bad news, path positive for melanoma.  

What the heck?!!!!  Was I never going to get a break?  It had been almost 5 years since my last lesion!  I had never been a serious sun worshiper.  Yes, there had been a couple of sunburns as a child and a couple more as a young adult.  How could this be???  Research tells us that the use of tanning beds before the age of 35 increases the risk of developing melanoma by 75%.  However, we also know that sun exposure is not melanoma’s only cause.  And in truth, I had been lucky.  Not everyone gets almost 5 melanoma free years after their first lesion, especially with a positive node.

Sentinel node testing was done.  When the resection was completed by my surgeon he removed the sentinel node along with 12 additional ones from my left axilla.  They were all negative.  Oncology still had no real treatment options.  We discussed IL2.  However, after the lesion was removed I was again NED.  Having ‘no evidence of disease’ elsewhere in my body according to scans, IL2 seemed a little extreme.  I opted to continue to watch and wait with the addition of “cherry picking” lesions as they cropped up.

In 2009 a routine chest X-ray, part of the occasional radiological survey along with some PET scans done during those years showed “something” in the right upper lobe of my lung.  Not in the lung tissue itself, but in the right bronchus.  Given my history as an asthmatic, it was determined to be some sort of mucus plug.  I was told, “Melanoma NEVER looks like that.”  My husband did share one article that demonstrated that sometimes, it kind'a did!  But, I bowed to authority and watched and waited.  

In April of 2010, having been referred to a pulmonologist  who had also been watching and waiting on the lesion that never got worse, but never got better, finally did a bronchoscopy.  Sure enough, the gunk pulled out proved to be melanoma.  So…melanoma CAN look like that!  I do not hold any resentment toward either of the doctors.  I could have demanded a bronch much sooner.  It just proves that melanoma rears its ugly head in some very unpredictable ways and if you don’t study it every day, you won’t necessarily be prepared for it.  My mantra for melanoma patients everywhere:  Learn from me - GET YOURSELF A MELANOMA SPECIALIST!!!!

I was now Stage IV.  Before I could move on with fixing my lung, scans of my body were in order.  An MRI of the brain showed a 3 mm lesion in the right frontal cortex.  With that ringy-dingy, I was now shopping for a neuro surgeon and neuro radiologist, not to mention a thoracic surgeon for what I hoped would be only partial lung removal.  Trust me!  Bathing suit shopping is much more fun!

Docs found, blog started - as an easy way to update family and friends.  Since then this blog has evolved into a catharsis for me and my effort to provide a source of information and hope for others.  On April 27^th I had stereotactic radiation to the brain, followed by right upper lobectomy of my lung on April 30^th.  

As I recuperated from my surgeries, returned to work as a PNP in my pediatric office, and pondered what step to take next, in October 2010, my throat kept feeling really tight and weird.  I take a look.  A very strange black lump is visible peeking back and forth from behind the right tonsillar pillar.  Great!  Do I have to find all my melanoma myself?  An ear, nose and throat surgeon removed the affected tonsil and surrounding tissue.  Again.  Positive for melanoma.  It had not been noted on my recent PET scan.

 I knew I was in a serious downward spiral; too many recurrences, too quickly, in bad places.  I had to do something, but what?!!  At this point in melanoma world, Stage IV melanoma patients had a median survival of 8-9 months and only 15% lived more than 3 years after diagnosis.  The few treatment options available worked for only about 10% of patients.  Testing started on the BRAF inhibitors (a mutation for which I am positive) in 2008, but they were still in trials at this point - AND, because of my surgeries I had no measurable disease…something the trials required.  Vermurafenib and Dabrafenib were FDA approved in 2011 and 2013.  Despite most patients developing resistance to the drugs in 6-9 months (though combining them with MEK inhibitors has improved those numbers and decreased side effects) they have been a boon to many.  The immunotherapy, anti-CTLA-4, now known as Ipilimumab or Yervoy, was tested in mice in 1996.  It was in trials with human ratties in 2010, but unavailable to me.  Ipi achieved FDA approval in 2011.  In 2013, analysis of 12 studies examining more than 1,800 patients treated with Yervoy found that 22% of these Stage IV melanoma patients had survived 3 years or more with some approaching the ten year mark.

In December 2010, despite an odd 4 mm lesion of questionable origin now showing itself in the right parietal area of my brain, I was accepted into the Phase 1 anti-PD1 (Nivolumab, now called Opdivo) and peptide vaccine trial in Tampa, at Moffitt Cancer Center, with Dr. Jeffrey Weber, in which I remain today.  The lesion miraculously disappeared on subsequent MRI’s.  I was given 6 vaccine injections and Nivo at 1mg/kg every 2 weeks for 6 months and nivo alone every 3 months for two additional years.  My last dose of nivo was 21 months ago.  During the active portion of the trial I was followed with CT scans to neck, chest, abdomen and pelvis with an MRI of the brain every 3 months.  Progression would have meant expulsion.   I have now ‘graduated’ to every 6 month scans.  My last set were in February and I remain NED.

I will never be one of those people who say they are thankful for their cancer diagnosis.  No!  Melanoma has stolen much and exacted an incredible toll from those who loved me.  The time and financial costs expended have been more than I can calculate.  Friends and family have worried, been distressed, experienced pain.  My kids have born the burden in ways that came to light immediately and in the more detrimental process as a weight over time.  Yet…we are all here, together; having made the conscious decision to stick it out, to be there for one another.

People ask me how I do it.  How I go on, a bubbly, energetic person, in the face of all I have experienced and the fears I must continue to harbor?  In some ways, what choice do I have?  Though I would like to be able to say, “Melanoma didn’t change me!  I’m the same person I’ve always been!”  The truth is that melanoma and its tribulations have taught me much.  Yet, WE ALL CHOOSE, everyday, the person we want to be.  I have never spent time on, “Why me?”  I figure, “Why not me?  Nobody else deserves this crap either!!!”  But, I have raged at the persistent, inescapable nature of this beast.  As of yet, no one with melanoma can feel truly free, no matter how many surgeries or treatments endured.  There remains a chance, that melanoma is still there, just hiding, until it decides to attack again.  That is infuriating!!!  Knowing my loved ones, who have educated themselves about this beast such that they can hang with Melanoma Big Dogs, experience that fear, that worry – is crushing, if I dwell on it.  I am no Pollyanna.  But, I have worked to turn that rage into something of worth.  I try to help those seeking answers through my blog and on the melanoma forum of the Melanoma Research Foundation at melanoma.org.  I am not alone in that.  The site is a source of comfort, information and support due in large part to the generous melanoma patients who share their experiences and concern.  I figure if I was forced to learn about and from melanoma, I might as well share that knowledge with others.

So, how do I stay positive? Through my work with other melanoma patients, the children and families I’ve spent my life caring for and my own experiences, I have narrowed it down to this.  Love! Live!! Laugh!!!

Love!  Without the support of friends and family, I would not be here today.  That is not drama.  It is true.  They gave me strength, courage, distraction, and a REASON to continue when things seemed insurmountable.  Love will not always come from the sources you expect.  Sadly, some you think will be there for you will not.  However, love will spring fresh and true from places where you least expect it.  Beautiful and enduring.  

Live!  When first diagnosed and at various times since, I have been encouraged to lie down, rest, quit my job, take a break, etc.  There were those who thought I should not continue to pursue my master’s work…at least not right then.   Don’t do those runs and INSANITY work-outs.  Save your strength.  And while there are plenty of times when rest and breaks were important, if not essential, I NEEDED the normalcy of MY LIFE!  While working 12 hour shifts, running, exercising, completing two semesters of course work in one is decidedly NOT my recommendation for everyone, for me, taking care of children, being busy with my hobbies and friends was MY LIFE.  If I did not continue those things, I had lost my life, before melanoma took it from me.  So…LIVE!  YOUR life.  In whatever way feels right and real…for you…as best you can…as long as you can.

Laugh!  If you cannot learn to laugh at the crazy things that happen in melanoma world, you are in for buckets of tears.  Rude people, demeaning situations, physical pain, horrible fear – will happen.  BUT, there will also be something funny, right alongside.  I promise!!!  Scans, surgeries, participating in a rattie experiment (Oops, I’m sorry…a clinical trial!), come with some pretty cringe worthy, ludicrous moments.  Yet, traveling with my sister for my trial resulted in some of the most fun we have ever had! Planning metal-free comfy travel and scan attire is comic at best.  I offer great thanks to:  saggy booby lady, pilling sweater woman, mean woman in a snit on the plane, baldy at the car rental place and so many more characters, who might have ruined my day, had I let them.  Instead, they became adventures and opportunities to laugh like a hyena.  (NOT while they were looking!!!) Dear ones who sent pics of themselves on the potty while I was getting an infusion, saved up stories to distract me with when getting my injections, nurses who kept it real AND fun, sweet plans my husband has made to surprise and spoil – I thank you all.  

So, it is all a tangle isn’t it?  I would not be writing this had I not had melanoma and a blog.  I would not be here, living and laughing if not for my friends and random strangers.  It is a weird and wonderful world.  I am thankful for every moment in it.  I am grateful for all of you who spend those moments with me.  I wish you well.

Celeste Morris