A melanoma/GCC update ~ OR ~ If at all possible, don't let anyone take a hole punch to your lily!

Note to self:  Perhaps getting a labial biopsy, second shingrix injection, and a recheck with blood work at the oncologist's office all in one day is not the smartest move following a 3 day migraine!  But, what the heck?  I figure there's no need to let misery and time spent in waiting rooms poison more days than I can help!

Yep.  A labial biopsy is what you think it is.  (Labia minora to be anatomically correct - hoo hoo, monkey, pocket book [There's a really funny story re: B's lack of comprehension when a mother regaled him with the problems her daughter was having with HER pocket book!!!], fanny, nether regions, muffin, etc - to be more colloquial!)  And it ain't fun.  Not that anyone would suspect otherwise!  But, to back up a few steps, we'll cut to the chase first:

Currently, I am:

194 months (16 YEARS!!!!) post my original melanoma diagnosis in 2003 at the age of 39
114 months Stage IV (9 and 1/2 years!!!)
108 months NED (well....for melanoma at least)
106 months after starting nivo (Opdivo)
76 months (more than 6 years) AFTER my last nivo infusion in June 2013.

I am also:  
14 months post my diagnosis of adenocarcinoma ex-goblet cell carcinoid (GCC) and the removal of my appendix containing its 10.5 cm tumor, my ascending colon including ileocecal valve, gall bladder and ovaries
11 months post completion of 3 months adjuvant CAPOX chemo for same

I have been lucky (and simultaneously seriously peeved) to have seen a zillion doctors over these past 16 years! Oncologists, radiologists, multiple surgeons, dermatologists.  Oddly enough, despite the relatively rare (only once or twice a year) migraine previously mentioned and asthma since childhood - shockingly improved once done with lung surgeries and immunotherapy!!!! - I am the healthiest person with two deadly diseases that you will ever meet!!!  And, though I HATE being the patient, I am a very good one.  I had annual pap-smears well into my 40's (ALL completely NORMAL!!!) and even got my first recommended mammogram (though as a forever member of the itty bitties, the necessity eludes me especially given the incredible number of chest CT scans I've been exposed to) which was also completely normal.  My cholesterol and lipid levels make some I could mention quite jealous.  BUT, our medical system in the states requires a PCP (primary care provider) and mine, though mostly in name only to be honest, retired last year.  So B and my local onc got a bee in their bonnets that it was time for me to have a real physical by a real doctor.  Good Grief! Luckily, I found a very bright, attentive, if a tad anal, physician who didn't run screaming from the room nor allow her eyes to glaze over when faced with my history.  She seemed more knowledgeable about post chemo symptoms than my onc and was optimistic that my neuropathies were likely to continue to improve.  However, she was intent on a COMPLETE tune up and eval, so that's what I've been doing!  Bone density - done and fabulous.  Mammogram - completed and normal.  (Seriously, is it really necessary to advise a person whose boobie is stuck in a vice, to:  "Hold still.  Don't move."????  Awwe, man!  I was just about to walk away!)  Flu and both doses of shingrix vaccine (to prevent shingles) duly attained.  And though I REALLY didn't want one, a visit to a gyn was the only thing I needed.  But, NOT for the pap-smear.  Which yes, I got, and was NORMAL!

There were two actual issues.  Ever since my ovaries were summarily yanked in September of 2018, I have not had one night that didn't include several episodes of extreme hot flashes with the feeling of smothering, followed by profuse sweating, often soaking the bed linens, followed by being freezing cold. Not very conducive to rest!  Surely, I thought, over time, these symptoms would improve.  Lord knows, I am far from the only woman on the planet to experience them.  However, over a year in, they had not.  Hormone replacement therapy is one of many things in the medical world that swings on a pendulum - ricocheting from "the best thing ever" to "risky and contraindicated".  My research indicated that it should pose no increased risk given my melanoma and GCC history and no undue issues otherwise as I am not a smoker or infirm - but what do I know?  My PCP wouldn't touch the issue, leaving it up to the gyn.  I can assure you, if men endured menopause we would know a lot more about it!!!

Issue number two.  Remember my bungie work-out adventure?  Perhaps I didn't share that here.  Anyhow, late in the summer Rose and I joined my dear Ashia for a Bungie Workout!  A strange event during which you are placed in a harness attached to a bungie cord from the ceiling and you proceed to do a workout while so tethered!  It was fun!  It was also a bit rough on the nether regions as my harness was too large and loose, causing a fair amount of chafing and soreness to that area.  When the soreness continued, I gave the area a close inspection and noted some very dark purple/black splotches to the labia on one side.  Hmmm....  I decided they were bruises and gave them some time.  They did not improve - nor worsen - though the soreness went away.  After a few weeks I confessed the situation to B.  He put on his brave face.  The one that he uses to try to cover the, "Oh, F$@K!" expression.  Still, our research indicated that I had something called vaginal melanosis.  A fairly common condition that most women don't even know they have.  Often occurs along with vitiligo - oddly enough - which I have everywhere, including that area.  And as the lesions remained unchanged, were not terribly discrete in their blotchy splotches, were never raised, painful, itchy, bleeding - or anything else - and my melanoma had been cutaneous rather than mucosal - we figured it was okay.  But again, what did we know?  We figured a biopsy would be in order.  UGGGGHHHHHHH!

So, yes indeed.  My unhappy ass was off to the gyn.  A limp sort of fellow, who doesn't pay attention to much, ordered and completed all the testing previously noted.  Stated that he felt the lesions were melanosis and nothing to worry about were it not for my melanoma history.  A biopsy would be in order which given his lack of concern would be completed on my recheck for the hormone replacement therapy he thought would have no ill effects and perhaps some positive ones.  Last week I returned.  The hormones have worked well and I can sleep through the night again!  A biopsy was completed.  If at all possible, don't let anyone take a hole punch to your lily!  Yes, a punch biopsy, the size of a typical pencil eraser, was taken from an anatomic location that is not very thick in the first place and then rather than place a stitch to stop the bleeding, silver nitrate was applied.  This is a chemical placed on the head of a stick, making it look a lot like a match, that can be used to sizzle off overgrown tissue and yes, stop bleeding.  But you have to realize, as a provider dabbing said stick around, that everything you 'dab' is going to turn black and slough off!!!  Should men really be allowed to function as OB/GYN's?  I have mixed feelings about that, but to continue...  Healing has been more difficult than after having either of my babies.  Yes, all the tissue to which silver nitrate was applied - ....  Well, I'll spare you the gory details, but suffice it to say that what was a punch, turned into a doughnut hole, then a tear, then a mess, and now a healing hound's ear that did not come out of the fight with the coon as well as he had hoped!

Still, all's well that ends well, right?  The biopsy was negative for melanoma and consistent with the changes of melanosis.  I did have a moment of pause, when on receipt of the path report I noted the pathologist was the same one who had failed to accurately diagnose my original melanoma back in 2003!  What tangled webs we weave!!!  The proteins (CA19-9, CA125, and CEA) my oncologist follows via blood draws in an attempt to determine any progression of my GCC were all normal.  I will have a recheck with her in March after a colonoscopy and CT's of chest, abdomen and pelvis.  Maybe I can get all those done in one day!!!

So, there you go.  A day (weeks, months, years - if we're lucky) in the life of a cancer patient.

Today the crystal clear blue sky is a perfect canvas for the red and gold trees.  Temperatures have warmed a bit.  Think I'll go for a run.  Me and my lily should be up to it!

Just keeping it real.  Thankful for my days and more importantly, for each of you.  Love, les.