May 1, 2019

It’s May. How did this happen? At least 20 days per month for the past 5 months, I’ve been thinking “You need to update your site, or people are going to think you died.” It’s not for lack of things going on. It’s not because I’ve got too much going on. I really can’t explain it. More than a few times, I’ve sat down at my laptop, prepped a cup of coffee, and blah. Nada. Brain cramp. Empty space.

Soooooo… here I sit again today. Two cups of coffee, an entire bowl of popcorn (and it was not a small bowl), a can of sparkling water, 3 dark Hershey Kisses… let’s see what we can do!

BODY: (Feb-March)

I turned 50 at the end of last year. As my primary care physician noted… “This brings new tests and things we need to check”. Uh huh. By “things”, we’re talking about the colon. Great fun. As if the barium contrast for CT’s isn’t enough of a clearing house agent, now I’d need to put myself through yet another session of liquid induced unleashing. As it turned out, my doc asked if I’d prefer to give Cologuard testing a try. I’d just suffered through an afternoon of “CT side effects” in September, and had another imaging scheduled for March, so the idea of avoiding the voiding in January sounded fantastic to me! If you don’t know what Cologuard is, you clearly haven’t been watching television, because their little dancing logo character is all over every channel. It’s an excellent place for them to do their marketing, as colon cancer has been linked to a sedentary lifestyle. Can you say target audience? #nailedit! Think I’m yanking your chain? Read more here.

Anyway… cute little talking, bouncing logos aside, the Cologuard test requires no prep, and is done in the comfort of your own home. Be warned, it’s not all roses and loveliness. Don’t let that cute smooth-talking logo deceive you. It requires doing your morning business into a bucket, while simultaneously trying not to pee into said bucket. Ever tried to relax your biz without a bladder release? Yeah. Give that a shot tomorrow morning, and let me know how it works out for you. The fun doesn’t stop there though! Once you’ve successfully managed to make a deposit, you’re asked to scrape the surface with the enclosed toothpick sized stick, and place it into the wee little test tube of preservative fluid. If it’s been a long while (or never) since you’ve been camping, and have little to no recollection of the severity of stench that goes along with fecal matter which is not enveloped by water… let’s just say you’d be wise to have nasal coverage in place. I swear I couldn’t get my hands clean enough to eat breakfast after I was done. Then there was the humiliation of handing my box of sh** to the UPS guy. But hey… on the good news side… when all was said and done, and shipped out to the lab, the results came back “Negative”… which is really a positive thing!

On a slightly less gag inducing topic, I had a biopsy done on the bottom of my right foot. Initially, my rockstar derm and I had discussed whether or not this oddball looking little freckle even needed to be removed. I’d been eyeballing it for some time, and when he paused just a liiiiittle too long for my comfort during an appointment, I swear it started staring back at me. It didn’t look like all of its other siblings found on my skin surface, but also didn’t seem too “mela-scary”. Have you ever had a cut on the bottom of your foot? Unpleasant, right!? If you haven’t actually cut your foot, but have stepped barefoot onto a Lego block, you’ve got some idea of how it feels. The thought of getting stitches in the bottom of my foot, forcing me onto crutches, had me pushing the cutting out a few months, so I could swill it around my brain for a little while longer.

Three months went by between appointments, and a wee lump had developed under the skin, about 3 mm away from the weird looking freckle. UGH! Now I HAD to do something about it, and I could tell my doc was a bit uneasy. I packed some crutches along to my next derm appointment, so the rockstar doc could fish into the bottom of my foot. Imagine stepping on a needle four times in rapid succession. Sounds painful yes? It is. Being stabbed in the foot with shots of lidocaine is quite painful. My doc looked at me when he was finished numbing the area and asked if I was ok. I told him that I no longer felt like punching him in the face… so yes… I was going to be alright. Lucky for me, my docs have a solid sense of humor! 

Once the biopsy area was stitched up, Frank decided it was wise to get the doc’s opinion on just how long he’d need to keep me strapped to a chair.

Frank: “Soooo… you realize, you’ve now caged the squirrel.”

Doc: slightly evil grin sliding into the corners of his mouth “Not my problem. You’re the one that has to live with her!”

Frank: “That’s exactly my concern, so let me ask you this… What is the ideal amount of time she needs to be off of her foot? What is the suggested amount of time? And what is the absolute minimum amount of time?”

Doc: looks at me with knowing glance and most serious face he can muster “Ideally, 3 weeks. Suggested, 2 weeks. MINIMUM, 1 week, min-i-mum.” 

Me: “One week it is!”

Giving Frank a pity glance and head shake, my doc then asked if I’d prefer to come back in to have the stitches removed, or if I’d like to have them done closer to home. I informed him that I have a sterilized removal kit. Again we got the head shake, but also the “ok” for me to remove them myself, with the contingency that I email him a photo prior to removal, for assessment of healing status and approval. The stitches healed quite rapidly, looking ready to go after two weeks. I emailed the photo. Doc replied, asking me to “Please keep them in for one additional week, in the event that you accidentally go running on them again.” I lasted another 5 days. Shhhhhhh… that’s our little secret. 

Foot pathology came back as good news: Acral Compound Nevus and Thrombosed Varix. In layman’s terms, one was a melanoma faker and the other a ruptured vein from a blood clot. No mela-meat and no more cutting!!! Yay!

As we roll into 6 years since stage IV diagnosis, my body appears to be clear of any spare mela-meat, and holding strong! The latest set of blood labs showed high neutrophils and low lymphocytes. A little look into “Dr Google” tells me that strenuous exercise can cause both of these things. Oooookay… note to self… do not go in for blood labs after speedy morning run! Check again in six months. 

My latest CT was at the end of March: Lungs show “Ongoing hyperinflation. Stable scarlike opacity at right lateral base. Background low level chronic interstitial disease”. In other words, the lobe removal surgery left some marks behind, and it’s going to be harder to breathe when I exert myself. Ok. I’ve learned to deal with that. Sort of.  My pancreas still shows “stable versus slightly smaller 1.5 cm cystic focus on the pancreatic tail”. Slightly smaller would be amazing, but I get the sense that has more to do with image slicing and what section of the cyst actually got measured. We’ll take another look in late September. Pelvic region always shows a little twist of some kind. This round finds a “somewhat heterogeneous uterus, may reflect leiomyomatous change. Probable crenated right adnexal cyst measuring up to 18 mm. Sonography is offered for further evaluation”. The cyst thing is so very normal for me. They come and go month to month, depending on Ma Nature’s visit status. No worries there. The heterogeneous uterus happens in about 50% of women by middle age… sooooo… we’re going to go with “normal” on that, until we get another look in 6 months and see if there is something more concerning. I’m quite done with these pieces parts. It wouldn’t hurt my feelings at all to have them yanked out.

Best news from the CT: “Essentially stable study since 9/26/18.”

BRAIN: (February 5)

Let’s break this one down: “Stability of an enhancing lesion measuring up to 5 mm at the left parietal occipital junction. There is a small amount of surrounding FLAIR signal abnormality which is unchanged.” — This is “Joey”, still hanging out like a bump on a log. Remember Mike’s cat? If not… dig into the update archives from 2017… you’ll understand this better. No note of Joey’s pet squirrel though… that tiny punctate spot sitting just behind him. We ran the latest resident through the wringer with the imaging, and found that Joey’s little buddy is still there, and still teeny as ever. Also no note of the “encephalomalacia”. But alas, the “brain damage” is still there. Softened or missing brain mush doesn’t just solidify and regrow. Don’t destroy your brains folks, because NEWSFLASH, you are not a starfish! 

There are “areas of susceptibility artifact and FLAIR signal abnormality associated with prior treated lesions in the paramedian frontal lobes, left parietal lobe, posterior right frontal lobe, and right temporal lobe. Additional scattered punctate foci of susceptibility artifact in the subcortical white matter are nonspecific, but may be related to hypertensive microhemorrhage.” — Brain scabs. There are brain scabs EVERYWHERE. ha! No surprises there… at least not for me and my brain genius doc. Now if someone with no history of my condition were to see these images, they might have all kinds of panic induced questions. ūüėČ 

Most importantly: “No new lesions are identified”

Next look at the brain is in less than a week! 


If you take a peek at my Instagram page, you’ll see I’ve been doing a lot more hiking and running. I do still ride my bike, but more as a break for my joints than as a consistent form of exercise. For those who are unaware, I was running before I began cycling. I missed it, so I’m back at it. Part of me is doing it purely “because I can”, and part of me is doing it to feel as though I have SOME kind of “control” over my body. False sense, yes, but let me take and run with it. I have cancer, throw me that little cookie crumb! I’ve signed up for a half marathon in December. Anyone else want to prove to yourself that you have “control” over your body too? Thirteen point one miles. Bring it! Let’s do this!¬†

Before I leave you off, I would be remiss if I didn’t mention something for “MELANOMA MAY”. It is melanoma awareness month. As a public service announcement, I’d like to remind you of what it took to rid me of the spread of mela-meat in my system (see review below). I also would like you to note that once “just skin cancer” gets inside, not everyone is as fortunate as I am in regards to treatment response. I am what is known as a “complete responder”, and I may quite literally, be full of epic sh**! But that’s a post for another day! ha!

On a more serious note, I have been told by more than a few doctors and nurses, that I am simply “a miracle”, or that I was “a difficult case and you’re kind of a miracle”. I’ve also more accurately been described as “that pain in the ass outlier who goes against everything we were taught in the medical textbooks”. What has gone from a 4% chance of survival in 2013, has now jumped to 35-45%. While that’s a flying leap of a big deal in the cancer world… Is that enough for you to take the risk? No? Then wear your sunscreen (and slather that goo all over your babies and grand-babies!), schedule a visit with a dermatologist, and take a gooooood long look at every square inch of yourself!

Here’s how it all started — Resection of “suspicious mole” on right shoulder — June 2007. “Oops, that’s melanoma, and we didn’t get it all.”  Wide margin excision (down to the muscle) on right shoulder — July 2007 “You’re all good now. Skin checks every 6 months. Only 2-4% chance that anything is coming back.”

April 2013
Craniotomy (brain surgery) to remove melanoma tumor from left frontal lobe —- “Welcome to stage IV”. What the hell happened to my 2-4% chance of recurrence?

May 2013
Gamma Knife Radiation – Round 1
Targeted brain radiation for metastatic melanoma tumors in brain

May 2013 – July 2013
Immunotherapy infusions every 3 weeks for systemic treatment of the melanoma
Ipilimumab (YERVOY)

September 2013
Gamma Knife Radiation — Round 2

January 2014
Gamma Knife Radiation — Round 3

March 2014
Gamma Knife Radiation — Round 4

April 2014
Gamma Knife Radiation — Round 5

May 2014
Gamma Knife Radiation — Round 6 … “What are we going to do to stop this? We can’t just keep radiating her brain every 6 weeks.”

June-July 2014
MEK inhibitor immunotherapy pills — These gave me a terrible looking rash all over my face, neck, and chest, but worked really well in shrinking tumors!

August 2014
Lung Surgery
Right Lower Lobectomy to remove metastatic melanoma tumor. — Persistent air leak led to an extended hospital stay of 16 days, before I was finally sent home with the chest tube still in place. Another 9 brain lesions developed while in recovery. Chest drain remained for 6 1/2 weeks post op.

September 2014
Gamma Knife Radiation – Round 7 …… Still had the chest drain in for this one. 3.5 hours in the gamma machine, with that chest tube backing fluid up into my chest cavity. It was all I could do to not cough, choke, or cry. Definite low point in this whole battle.¬†

Sept-Oct 2014
MEK inhibitor… back on the rash inducing pills, but there were no other FDA approved options for a patient with uncontrolled brain metastasis at that time. 

November 2014
Gamma Knife Radiation – Round 8

November 2014 – BEGIN Pembro
Anti PD1 immunotherapy infusions for systemic metastatic melanoma
(KEYTRUDA) — this treatment was every 3 weeks for 20 months.

December 2014
Gamma Knife Radiation – Round 9….. Keytruda needed a little time to ramp up my immune system, and stop these little buggers from cropping up in my brain!

April 2015
Craniotomy — Brain surgery to the right parietal lobe. — The Keytruda and gamma knife had combined to make a serious mess out of a previously zapped tumor. It just continued to pee edema into my skull until the brain shifted so far to the left (physically… not politically), that the anti-seizure meds couldn’t contain things any longer.  

February 2016
Gamma Knife Radiation — Round 10 …. This was to tackle a late bloomer tumor, well into what was otherwise very successful immunotherapy treatment. This is the little lesion that almost ruined me. You find a comfort zone when scans are coming back nothing new, nothing new, nothing new. Then BAM, something new. Recurrence is harder to hear than initial diagnosis. Thankfully, for the only time ever in my gamma treatments, this lesion was a solo occupant. We zapped it, continued Keytruda infusions, and have been fortunate thus far.

July 2016 — END Pembro…. This was not a planned end of treatment. At that time, protocol was to get infusions every three weeks for a duration of 24 months. However, when the arthritis kicked in ripe and hard, followed by pancreatitis, we decided that maybe it was time to “take a break”. I had no visible lesions in the body by that point, and only scar tissue in the brain. Sooooo… we stopped. The pancreatitis went away, the arthritis lasted about another year (treated with sulfasalazine), and the hypothyroid is a permanent status. But hey… I’m “cancer free” right now… and I’m told that’s kind of a big deal.

Be good to other humans. I promise to try to come back here more often, so you don’t have to read through update posts that take more time than I spend in doctor’s offices! 

Niki News May 2019
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