Yay… we’ve rolled over another new year and life has remained, for the most part, “boring”! **insert soft golf clap here**


Joey working hard to slim down

Basically the same old news. Brain MRI MayStable slightly decreased size of enhancing lesion (now measuring 4mm previously 5mm) at the left parietal occipital junction. Unchanged small amount of T2/FLAIR signal abnormality which is unchanged. In plain English, Joey is still being his normal abnormal self… but he looks like he may have lost a hint of weight, or at least looks a bit slimmer at this camera angle. 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 scatter punctate foci of susceptibility artifact in the subcortal white matter are non-specific but may be related to hypertensive microhemorrhage. In other words, there are spots alllll over the damned place. Mild mucosal thickening of the ethmoid air cells. The mastoid cells appear clear. That’s fancy science speak for “Niki has a stuffy nose”. NO NEW LESIONS.

Brain MRI August is written in different terms, but lays out the same story. Joey at his more slender 4mm, comfortably camped out in a small bath of edema with his wee pet squirrel sitting next to him. Former pre-zapped lesions still showing as “brain scabs” all over the place. No stuffy sinuses this time, but still NO NEW LESIONS.

Brain MRI NovemberThere is stable size and appearance of a 4 to 5 mm enhancing lesion in the left parieto-occipital junction. There is slightly decreased prominence of additional previously described, more punctate-appearing satellite lesion located immediately anterior to this lesion. Soooooo… Joey is still there, looking about the same size, but now his pet squirrel may have lost a tad bit of weight. Still a mess of “brain scabs” and note of treatment related changes and “volume loss” around the surgical areas. NO NEW LESIONS.


In May, I noticed a small bump on my right shoulder blade. With my superstar derm already scheduled for a June visit, I tried to contain any panic and monitor for growth over the next few weeks. I’ve had subcutaneous melanoma lesions before. They grew at exceptional speeds. Soooooo… when this little bugger remained rather small, I wasn’t terribly concerned when my appointment rolled around. My doc, however, is far more experienced and diligent with anything that lumps or bumps under a melanoma patient’s skin surface. After quizzing me about when it cropped up and if I’d noted any growth, he said he’d feel more comfortable if it were removed, so we could know for certain. If you could see my doc’s face,

Could you say “no” to this face?

you’d see his capacity for shooting a fabulous “concerned dad” look. It’s one notch up from baby yoda face on the scale of “how do you say no to that?”. This meant it was to be my second biopsy in as many visits. I joked with him that he was getting a little knife happy on me, and I was beginning to wonder if he was revenge cutting to as pay back for my sassy remarks. HA! Two stitches later, I was out the door. Pathology came back confirming “cyst lined by flattened squamous epithelium and filled with laminated keratin. There is a variable perivascular mononuclear cell infiltrate.” I don’t know what any of this means, other than a cyst is not melanoma, and squamous cells make up a portion of the skin. Superstar derm took a look at the cells for himself, and confirmed with me that all was ok. I skated through my follow up appointment in November with NO CUTTING! Yaaaaaaas! Win!

Late September brought around another chest/ab/pelvis CT, and the typical fun of barium contrast smoothies. I’ve reached that point in follow up care, where getting a CT to keep tabs on potential recurrence has taken a back seat to “my guts are exploding every 6 months, and I’m more concerned about the CT’s than I am the return of melanoma”. Mentally, it’s a complicated place to be. While I know that “once a stage IV patient, always a stage IV patient” is the case with incurable (as far as science has shown to this juncture) metastatic melanoma… you eventually reach a point where you’re ready to take a chance at stretching out the monitoring. You don’t often hear a patient is “happy” that their brain was the trouble zone. Most

Ooooh… fun with barium contrast smoothies.

patients go into full panic mode upon learning that the disease has moved into such a delicate area as the central nervous system. In my case, by the time we learned the melanoma had progressed, it was already in my brain. This has always been the “normal” for me, and I would MUCH PREFER a brain MRI to a full body CT. I have no issues with claustrophobia. I can comfortably chill in an MRI machine for as long as it takes (typically 45 minutes). Although a full body CT takes only a few minutes, the contrast medium wreaks havoc on me for two days! As far as we can tell, my body has remained clear of melanoma lesions since February 2015. This means that following my next CT scan, we should be able to stretch the time out to 1 year follow ups for the next year or two. Eventually, scanning will only be needed if/when symptoms occur. Nobody wants to cross the narrow line of regular scan radiation potentially creating its own new set of problems. Ugly future issues aside…. my last two CT’s picked up some potential oddities already currently setting up camp in the “lady regions”.

Conclusion from September CTSlight regression of chronic cystic lesion pancreatic tail varying from 15-17mm in size. Negative ductal dilatation or pancreatitis. This is a known entity. This cyst has been with me since my very first CT scan ever. It did not “glow” on PET’s, so we’re rather sure it is an incidental benign finding. Unless it begins to grow and bother me, we have no worries. Moving on…… 2.6 cm right adnexal cyst which may represent atypical ovarian cyst if the patient is premenopausal. Chronic small lesion along the posterior wall body of the uterus measuring 17-18 mm which may represent a fibroid. The case for me has been “ovarian cysts come and go with regularity”. This 2.6 cm little beast however, has doubled in size since my last CT in March. The words “may represent atypical” are not entirely alarming, but definitely caught my attention. Additionally, the “chronic” potential fibroid on the uterine wall. Ummmm… let’s begin with the definition of “chronic” — persisting for a long time or constantly recurring. I have to question how this “fibroid” is labeled as such, when this is the FIRST mention of it in over 6 years worth of CT’s. First mention. First. Ever. So what do we do about this new information? We get an appointment for further review with an expert on that “zone”. If further imaging shows these to be very normal changes in “a woman of my age”, and the doc feels there is little to be concerned about, I’ll relax. For now, these current findings have removed a bit of my desire to want to halt or delay to annual melanoma check CT’s. “Normal for your age” growths are an entirely different thing for a person who hasn’t dealt with “that glob on your CT image is trying to kill you”. Hopefully I’ll have some clarification and answers before my next melanoma follow up CT, which is due in March.


Assuming my brain remains free of new lesions, the MRI’s and follow ups to the brain genius doc will move out to 5-6 month spans. Officially listed follow up protocol for metastasis to the central nervous system is: “Brain MRI every 2-3 months for 1 year (beyond stable or NED), then every 4-6 months indefinitely.” I’m not sure if/when those standards will be revamped. As survival statistics and durations increase, insurance companies will very likely begin to bitch. As for the body checking CT’s, protocol allows for stopping them after 5 years of no new findings. My docs are being a bit more cautious, based upon the likelihood of recurrence. Should the ovarian cyst and possible uterine fibroid turn out to be “normal” or otherwise unrelated to the melanoma, I’m going to pursue a move to annual for another year or two, then be done with them unless any otherwise “hinky” symptoms arise.


Post run donuts are a must!

Running will continue this year. Last September, I ran “She Is Beautiful” 10k in Santa Barbara. What a GREAT TIME! Such a motivational event, packed full of women supporting and boosting one another up, rather than stomping on each other in all out competition. I loved it! And let’s face it… running along the shoreline of Santa Barbara was pretty amazing eye candy! I also ran my planned Holly Jolly 1/2 marathon in December. After taking some down time for a vacation to Italy in October, the re-build in miles took its toll. I managed to finish the run, taking second place in my age group, but not at the pace I was hoping. But hey… I’ve got a few “extra issues” (and pounds)… sooooo… I’ll take my second place with a big fat grin. There’s another run coming up next week, and one that I’m keeping eye on for February. The February run is “FCancer”… I mean really… I might be forced to do that one, purely on name alone. HA!

Aside from trying to remain as physically healthy as possible, I’m doing my best to make the mental move from “active patient in follow up care” to “long term survivor”. Being on the cutting edge of science has it’s “I’m still here” benefits, but also comes along with that “we don’t know” of the changing statistical curves. We’d like to think that folks who are 5 years out from cancer recurrences are “cured”. Buuuuut… being one of the top 2% of melanoma patients with brain mets to get on immunotherapy… I’m one of the plotting points on the new stat lines. It’s a little like being the Energizer Bunny with eyes on you, waiting for the need of a battery replacement. On the shiny bright side… the longer I can keep bouncing down the road, the deeper we get into scientific research, new findings, and new ways to tackle this disease. This is good. This is very very good.

“Boring”… YES!

Happy New Year to all! Make it a good one by keeping it “boring”! ūüėČ With the “mental transition” in place, I’m making some changes/additions to the site. Check out the new “healthy living” section, which will include articles on how to maintain a better physical AND mental you! Let’s all be “better and boring” together this year!

Niki News January 2020
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