June 21, 2017
Do you ever have those days when you look back and think “Where did the time go?”? Yeah. I feel like it’s been one of those months! I fear I’ve developed a bad case of “but first syndrome”. I do my best to stick to a “To Do” list, but when the tasks can’t be itemized by due date, or level of importance, I’m like SQUIRREL! That’s not to say I’m confused, or lacking in productivity. Plenty is getting accomplished, just in a very scattered manner. It’s easy to lose track of hours, days, or weeks when you start on your task list and “but first I need to…”all over the place! Or perhaps, could it be that I’ve finally developed that inner sense of calm that comes with the ability to be “meh” about organization? Bah ha ha ha haaaah… that’s just crazy talk! Don’t be silly. I had my head examined yesterday, and the MRI shows nothing has changed. : )
BRAIN: As usual, all neuro tests were passed. “Mike” and “Joey” are still hanging out in my head. If that statement confuses you… click here and read the May 9 post, to learn who Mike and Joey are. Thankfully, at this juncture, 3mm Joey seems to be as well behaved as 6mm Mike has been, so we have no immediate concerns. In a perfect world, these two bits would drop off the MRI scene and stay gone forever. The fact that they are hanging around in plain sight isn’t necessarily bad news, but it is something to be watchful with. Think of it like a bug camping out on a log. No big deal, right? Little dude is just chillin’ there. Unless… that bug is a termite. But is he a hungry termite? Maybe. A tidbit leftover in the brain… meh, whatever. Little dude is just chillin’ there. Unless… that tidbit is necrotic tissue. But is it ill behaved necrotic tissue? Maybe.
Let’s get all sciency life lesson for a minute…. We had a poodle, who had badly broken his leg. The leg bone healed, but a bit of necrotic bone chip unknowingly remained in his elbow. That pesky little bit began rotting its way through the skin, causing a naaaaasty wound that just would not heal. An open wound, literally down to the bone. Did I mention it was nasty? No matter how often we would slather the antibiotic gel on it, and keep it bandaged… it would eventually split open again. How did the vet figure out what was wrong and finally fix it? Exploratory surgery. The bit was located, and surgically removed. The skin healed nicely and never opened again. Having retained the memory of this incredibly icky biology lesson, (aaaand being one who is incapable of remaining in my cave of blissful ignorance) the question just had to be posed to my brain genius…. “If that bit in the left occipital is necrotic, can it start chewing its way through the healthy brain tissue around it?”. The response: “Well… we hope not!”. Honest, direct, and delivered calmly with a reassuring smile. No doubt he has known how to deliver news to me over the past four years! Soooo… here’s to hoping my brain stays the course of blissfully boring, with “Mike” and “Joey” continuing to remain on their best behavior! Other than that, yesterday’s scan shows no growth (old, new, or otherwise). Nothing is peeing edema into my brain mush, and previous excavation sites (craniotomy digs) are still noted, but not remarkable. Boring. Yes!
BODY: My last CT shows nothing out of “normal for Niki”. I’ve got some oddities, but nothing of real concern, and much of it unrelated to the melanoma. Pancreatic cyst? Check… still there and still the same size. Is it melanoma? No. Ovarian cyst? Check… still there, added one on the left side this time too. Are they melanoma? No. Suspicious “lesion vs scar tissue” on the right lower lung lobe… yup. Are they melanoma? Most probably no. For starters, they can’t technically be “on the right lower lobe”. That mela-meat loaded slab was removed in August 2014. Chances of them being lesions? Extremely low. Likelihood of them being scar tissue from the aforementioned lower lobe removal? Super high. However, this also makes me wonder what titanium surgical staples might look like on a CT. Staples, scars, whatever… they’re not tumors.
Lastly, for those interested in another science lesson this month, my CT offers up a look at “transient small bowel intussusception”. You and Google can waste hours of your life picking through the alarming info onthat topic! Suffice it to say, I am an odd bird, as this is apparently a “rare entity in adults”. This is the second time it’s been spotted on one of my CT’s. The first occurrence was Dec 2013. Does that make me twice as weird? Both times, this “medical emergency” was an asymptomatic, incidental finding. Soooooo… how do we know it is a “rare entity” if people can have this occur with no knowledge of it? Hmmmmm. I’ll just leave another one of these little guys right here…
UP NEXT: Lots of plotting and scheming for vacation is goin’ down again! The anal retentive over achiever in me has found her happy place… planning things down to the gnats ass! Trip Advisor, Booking.com, Travelocity, Trivago… sooo much research, and only a few months to get it done! HA! Plus I need to squeeze medical hoopla in there somewhere too. Thankfully, trips to USC for check ups oftentimes feel more like visits with friends than doctor visits! Next month brings a routine hello and blood check with medical oncology. Late August, sh** gets real again with a full load of doc visits… MRI, radiation oncology, dermatology, and rheumatology. Then in September, it’s time for another CT! I’m fairly certain I’ve got everything scheduled and covered until October… buuuuut… coordinating four doctors with differing clinic days…
May 9, 2017
May brings us into Melanoma Awareness month! Aaaaand… in the event that you’re new here… uncontrolled mutant “mela-meat” is what tried to kill me. Needless to say, I’ve developed a bit of an overprotective mom response to young people and tanning. Today, I went to the bank to deposit a check. Yes, people still write checks. As I stood awaiting an open teller, I noticed a gallery of frames sitting on a table for folks to peruse while they wait. Thankfully, the hubs had warned me about this table of advertising disaster prior to my bank visit, or I might have come completely unhinged. Yes, I can, on occasion, be known to flip my lid when adequately provoked. There, splattered all over the table in front of me (just in time for prom season!), was a salon advertisement for “Unlimited Tanning ONLY $21!”. Wow, you can now get your cancer at a discount! In a neighboring frame, stood a color photo of their tanning bed (aka “cancer causing chamber”). Having just left an hour of yoga, I closed my eyes for a moment, took a deep breath, and reminded myself “Not my monkeys. Not my circus.”. I am well aware that I cannot fix the world. I am also well aware that not all cancer is preventable, nor will everyone with a “bad habit” necessarily develop cancer. But still. There are factors known to increase one’s chance of facing diagnosis. If folks want to fry their bodies at the risk of death, or smoke until their lungs fill with mutant cancerous cells, or **insert bad habit here**… no amount of preaching is likely to change the behavior. Buuuuut, that damned mom response in me… argh! I’m still in self debate about whether or not I should frame up some gruesome surgical photos and return to the bank, neatly placing them on the table along with a few statistics, each in an eye catching, beautiful frames…
- People who first use a tanning bed before age 35 increase their risk for melanoma by 75 percent.
- The International Agency for Research on Cancer, an affiliate of the World Health Organization, includes ultraviolet (UV) tanning devices in its Group 1, a list of agents that are cancer-causing to humans. Group 1 also includes agents such as plutonium, cigarettes and solar UV radiation
- More people develop skin cancer because of tanning than develop lung cancer because of smoking.
- According to the Skin Cancer Foundation, melanoma, kills more young women than any other cancer. It is now the most common cancer in young women aged 25-29, second only to breast cancer in women aged 30-34.
- The incidence of melanoma has increased 15 times in the last 40 years. This is a more rapid increase than for any other cancer.
- About 9,730 people are expected to die of melanoma in 2017.
- The rates of melanoma have been rising for the last 30 years.
ALL SKIN CANCERS:
- Each year there are more new cases of skin cancer than the combined incidence of cancers of the breast, prostate, lung and colon.
- Over the past three decades, more people have had skin cancer than all other cancers combined.
Are we aware yet? Good. If not, please don’t hesitate to email me… I can send you photos and stories of people who haven’t been so fortunate as myself, and have either lost their battle, or are currently holding out hope that a research trial can grant them more time. YOUNG people. Under 40. Many under 30. **insert deep inhale here… and now… exhale** Positive vibes, or prayers (if that’s how you roll), for those roughing through the “It’s only skin cancer” darkness. Rant over.
And on the brighter side… get your abundant supply of sunshine through some good news…
BRAIN: Once again, no new tumors and no progression in the pieces parts we’ve been keeping watchful eyes on! There is still a visible 3mm tidbit in the left occipital region. We remain of firm belief, that this lesion was already gamma zapped in the past. January of 2014 to be more precise. Granted, this bit is some “meh” news. It would be preferred to have gone away and stayed away. Its “return” to the scene could have a multitude of explanations, including (but not limited to): a case of someone noticing and pointing it out again, slow re-growth, the development of necrosis, irritated scar tissue… blah blah blah. The fact is, unless we were to stick a biopsy needle into my head, or cut the little bad seed out… determining exactly WHAT it is, is impossible to do accurately via imaging. I don’t particularly feel the need to go putting any additional new holes in my head. Sooooo… we watch, we measure, we wait, and we watch some more. I’m not thrilled that old news is current news again, but am happy to report, that it looks exactly as it did 2 months ago. In my blonde-is-bliss little world of make believe, I’d like to think of it as mini-melameat “Mike” (that 6 mm of persistence in the right frontal gyrus) getting a new pet. This new-old bit is only half his size. I suppose I don’t mind “Mike” getting a new kitty or puppy, so long as it remains as well behaved as “Mike”, and doesn’t begin peeing all over the place! Little pissers that cause neurological issues are dealt with aggressively.
Thankfully, for now, I am neurologically sound. Passed the usual “drunk tests” once again. Not terribly surprising, but nice to be able to still pull some of these stunts out. Particularly given the lower dose of anti-seizure meds, and the fact that I hadn’t managed to make a yoga class (excellent for balance and focus practice!) in roughly 3 weeks! BOOYAH! The old broad has still got a little edge of control over the brain-fried-betty!
BODY: Still no new news here. Next CT is in a couple of weeks. In other “body scan” news, my hot shot surface goal tender (aka Rockstar derm) didn’t spy any lumps, bumps, patches, dots, or spots of concern! Diligent sunscreen use once again saves me from knife wielding dates with the doc!
Still riding my bike in an attempt at maintaining mental stability. Hey man, stress will kill ya… ooor get you arrested for punching some jackhole in the neck! And nobody wants to be getting their cancer screenings via the prison system! Ha! Aaaand on that note… I should let you take pause from the computer to GO ENJOY LIVING in the real world for a bit! Just remember to put on your sunscreen before you go… and don’t be too late in coming back! I’ll have CT news and a brand new life rant in the next few weeks! Maybe we’ll talk politics and what’s new with federal health care. Ha ha ha! Umm… hell no. Although… a substantial amount of eye roll-able commentary might allow me to keep real time oversight of these remaining mela-bits in my brain… hmmmm. Could save my brain genius and his minions from having to so diligently pick over the next MRI. Ha!
March 17, 2017 —
My orchid is sprouting again. I can’t explain this determined little plant. I have no green thumb, yet despite me, it continues to flourish. I’ve grown attached to this little potted piece of Mother Nature. Anyone who has spent any time with me, will tell you that I’m not a girly girl… so an attachment to a flowering plant is really not in my playbook! This little one has been with me for nearly 4 years now. What makes that significant? It was a gift from Frank’s co-workers, after hearing I was diagnosed with cancer, and had undergone my first brain surgery. This little orchid has gone through its own ups and downs, right along side me. When it first dropped its flowers, the stems dried up and turned black, I thought for sure it was curtains for this little plant. Yet here it sits, now in a new and bigger pot, having grown two additional leaves, and sprouting a new stem with buds…… for the third time. With air roots shooting out in all directions, it’s certainly not the prettiest orchid you’ll ever see, but this little one has grit and character. Should I haven given this plant a name by now? Heck, if I’m naming brain lesions, why haven’t I given this little one a proper title?
And while we’re on the subject of brains…
BRAIN: No new tumors. Booyah! My longest gamma free streak yet! The radiology report did note a tidbit in the left occipital region, but we believe that is old news. When you’ve had multitudes of spare meat grow in your head, it’s a challenge to keep perfect track of what is old and what is new. My brain genius and his current minion looked over the imaging again, tracked back over previous scans, and are rather sure this little bit isn’t indeed, anything new… but we’ll all be keeping watch over this ‘making news again old news’. My regular “drunk tests” were passed with flying colors. Having never met the current resident doc, I wanted to assure him that my neuro status is quite well intact… sooooo… I opted to add a little grace to the end of the heel to toe line walk, and casually leaned into a sweeping fold of “warrior 3”. HA! It was at this point, that my brain genius called me out as an over-achiever. LOL! With a big grin, he asked if I was up to trying a little more challenging test. What’s the best way to get Niki to do something? Push her competitive button! Challenge accepted! He moved around behind me… safety precaution in place… asked me to stand on one leg… then… CLOSE MY EYES. Oh sh**. Close my eyes? Oh maaaaaaaan! I’ve worked on this during “tree pose” in yoga class. It is not an easy thing to do, particularly under performance pressure. Go ahead, give it a shot. Remember to close your eyes! I’ll wait. **insert “Final Jeopardy” music here** How’d you do? It’s tough… huh? Granted, it is slightly easier to do with shoes on, and I managed to hold it for a few seconds, buuuuut still… mine could use a little more work! I’d like to comfortably veg out, eyes closed, perched on a single leg like a flamingo, and stay there until the brain genius and his minion tire of waiting for me to topple. Next brain scan is set for early May… This gives me some time to fine tune things. Perhaps at the next visit, I’ll make the docs give it a go! BRING IT doc! You got game? Ha ha ha!
BODY: No real news here. Next CT will be late May, as will another round of surface scanning from my fab derm! Overall, I’m feeling just lovely, and it’s nice to be able to push myself a little more in the fitness realm. I’ve got jeans that I breached out of two years ago, still sitting in the closet. I hate shopping. I love cycling. It’s a win/win motivation blend for shedding this muffin top! Aaaaaand now I’m thinking about muffins. Might be a good time to get 10-15 miles away from the kitchen pantry… it’s time to RIDE!
February 16, 2017 —
Let me just ask in advance for forgiveness of any grammatical errors contained in this update. It has been a long morning of trying to iron out medical billing… and I’m pretty sure it’s not safe practice to bang my head against a wall. What was paid? Should it have been paid? What do we still owe… and to whom? Why did we never receive an explanation of benefits for this? WHO gets these bills, if it’s not our insurance company? Just why, exactly, did that return claim get denied? You need what info, and from who? Why am I STILL getting billed for a visit with a doc who no longer works for you? Soooo much for technology “simplifying” things.
Billing and money recoup issues aside… The latest news:
BRAIN MRI: The next looksie into the cranial contents is set for two weeks. Until then, the only “oddball” thing going on with my head, is this gross creaking noise at the bone flap, when I lay my head down on the right side. I could show you an icky medical pic here… buuuuuut… rather than disgust you with reality, I’ll leave things to your imagination. A bone flap is similar to the top of your jack-o-lantern. Imagine you’ve decided to carve a hole in the side of your pumpkin, rather than at the top. Same concept. After surgery, these bone flaps are secured back into place with teeeeeny titanium screws and “plates”. I think I might have a screw loose. No… seriously. Stop laughing. 😉 Neurosurgery suggested an x-ray, but my next brain MRI should give everyone a close enough peek into the situation. It’s been nearly two years since the last brain surgery. We’re all pretty confident that the cranial bone should be knit back into place by now. If there is indeed a screw loose, it would be of no real concern. Besides, I don’t fancy the idea of someone splitting the scalp open again, simply to “lock tight” a screw back into solid position. No thanks.
BODY: The CT came back with no surprises. This time it was a new radiologist reading the images… didn’t know my history, so the report is very detailed. I like that! Poor fella apparently wasn’t informed that I don’t have a lower right lung lobe though. Ha ha ha! He ended up reviewing through studies back to 2015, looking for prior mention of a 10 x 8 mm “nodule, possibly scarring” of the “right lower lobe”. After referencing 4 prior reports, he concluded it “may represent a scar”, as this “nodule” has been “stable” for at least as far back as he researched. Ahhh well… at least I know he was being attentive in image review! I should really send him a thank you note, maybe some chocolate, and the x-ray of my chest while the post surgical drain tube was still in place?
Being diligent and super attentive, he also noted something that I’ve been keeping my eyes on….. A pancreatic cyst that keeps being noted as “stable”, when it really hasn’t been so stable. It was on my first ever CT (1 cm) in 2013… but has ever so slowly grown to 1.7 cm. It doesn’t concern me as metastasis, but I don’t like that it is crawling up in size… even if completely benign. The docs and I are going to continue to watch this little monster for any further signs of growth. This little beast’s growth spurt may be in response to the immunotherapy meds, and the mild pancreatic episode I had last June. If indeed that is the case, we should see no further growth.
Anyway… it was nice to see that someone clueless to my medical history (other than knowing this was a scan for potential melanoma metastasis), was kind of forced to pick through the imaging with a fine tooth comb. Either that, or he’s just super anal retentive… nooot that I’d understand anything about that personality type. **insert cheesy grin here** I’d rather see someone detail out what I already know of as “old news”, than have someone gloss over the imaging, only looking for something large enough to jump out and punch ’em in the throat. Ha! Hell… I’ll start reading my own CT’s if all we’re looking for are lesions bigger than a gum ball! Oh wait… I already do! Ha ha ha!
This month also saw the official addition of a new goalie (dermatology) to the team! This doc and I have crossed paths a couple of times since my stage IV diagnosis, but I had not yet visited with him as a preventative measure. When you’re dealing with melanoma splattered around your brain and innards, there really isn’t much point in worrying about what might be developing on the surface. However, since the immunotherapy drugs stopped flowing in last July, and the insides are looking quite lovely… it was time to re-evaluate keeping watch for any little trouble makers that may start on the surface. Early detection! I’ll still be getting regular CT’s and brain MRI’s, but now we have an additional watchdog in place… and he’s good… really good. It’s not even a bit of a stretch, to say that he has more melanoma treatment knowledge than quite a number of oncologists. No question that he is the right guy for the job.
New brain update in a couple of weeks….. meantime… I’m off to yoga. I’ll need to be in the proper mindset for dealing with the remains of the medical billing maze this afternoon.
January 11, 2017 —
Welcome to the New Year! 2016 started out on a low note, with the discovery of a brain met and the need for a 10th round of gamma knife. Beyond that, the year was more of an upswing! May brought about the end of a 14 year stint in radio broadcasting. I really can’t say that this was a “bad” thing, because I’m fortunate to be one of those people who can see things from the positive twist. I do miss some of my co-workers, and many of our listeners. Buuuuut… the freedom from responsibility has certainly allowed me to put LIVING into primary focus. A fellow “melahomie” tossed the question out to our Facebook group this morning… “Does anyone have a bucket list?”. I’m not one for New Year’s resolutions, and I never really thought about building a true bucket list. There are things I’d like to do, and places I’d like to see. But mostly… I’m just doing my best to enjoy life’s journey, regardless of whether I ever manage to do, or see, any of the things that have crossed my mind. I’m not certain I want the pressure of a “bucket list”. Although… I do thoroughly enjoy plotting and planning things, so it’s not an entirely bad idea. Do you have a grand “to do” list for 2017 and beyond? Here’s to health, happiness, and adventures (both big and small) in this fresh new year!
Brain MRI: Once again… “Stable size of 6mm focus of enhancement within the right…blah blah blah…” in Niki-speak, this means that “Mike” is still there. Yep, I warned you if that little tidbit was still in my head after the new year, it was officially getting a name! If you’re new here, or you’re old and have poor memory skills, let me catch you up….. “Mike” first made an appearance in August 2015. At the time, docs assumed this unnamed little critter to be a blood vessel, rather than a lesion we should be concerned with. Brain MRI’s are great imaging tools, but when tumors are tiny, they are quite difficult to concretely identify! ANYWAY… this unnamed tiny bit showed a little growth spurt between Aug 2015 and January 2016. Enough growth for docs to ascertain, that this spot on the imaging was indeed tumor tissue, rather than normal brain pieces parts. Soooo… the little bugger was gamma radiated in early February 2016. Yes, almost a year ago! With the exception of that bratty little pisser lesion that had to be carved out in April 2015 (you can review update blogs for that one), the other multitudes of spare mela-meat in my head have all shown the common decency to slowly GO AWAY after being gamma radiated. But noooo… not this bit. This little one is bound and determined to bask in the comfort of my right superior frontal gyrus. I figure, if there’s a chance I’ll be sharing cranial space with this one long term, we might as well be on a first name basis. But hey… at least “Mike” isn’t spilling edema everywhere and pushing things to the left so he can have more leg room! As long as he continues to behave, “Mike” can stay. But one false move, and I’m pulling out the stops again! I know people, who know people, who are armed with knives, radiation beams, and chemical weaponry!
Body: Next CT is due in 3-6 weeks. Nothing new has shown up there in the last two years, so panic levels aren’t quite as high as pending brain imaging. However, we are now 6 months post stoppage of immunotherapy… soooooo… there is a little increasing tension regarding these scans. It is unlikely that I’d show recurrence in the body before anything is spotted in the brain, but it is not impossible. Cross fingers and toes that my little immune soldiers have been well trained, and will continue to identify, outwit, and defeat the enemy mela-meat! With the lack of Keytruda being mainlined into me every three weeks, side effects seem to be diminishing little by little. Some physical changes will be permanent, but most should be manageable. The joint pain has eased significantly with the addition of Sulfasalazine. My rheum doc is pleased with the progress, but is still shooting for elimination of symptoms, so we can minimize any permanent long-term damage that inflammation can cause. The next move will be figuring out when we can back out of the meds, but still maintain stable joint mobility. It probably isn’t helping that I’ve ramped my riding back up to 4-5 days each week… buuuuuut… if it keeps me from punching people in the neck, it’s really what’s best for everyone. Right? Besides… the inflammation markers on my blood labs are back down into reasonable ranges now. Technically, there is no concrete medical evidence that shows I shouldn’t be working on building some strength again. Technically. Thyroid blood labs are always an interesting pursuit. Docs are still keeping an eye on the T4 to T3 conversion. I’m not saying I was right, buuuut… oh hell… yes I am… I WAS RIGHT damn it! I called that sh** last April! My latest conundrum, is what might be causing the oddities with my red blood cells. I have my theory, and my recent “all in range” iron panel only makes me feel, even more firmly, that I am on the right track. Immunotherapy side effects don’t follow the same general standards as traditionally developed forms of the same “diseases”. There is a lot of learning to be done.
Stay safe… try like hell to be happy… and let me know what’s on YOUR bucket list. If it intrigues me… I just might want to tag along!