November 22, 2016 —
Brain MRI: Chronic postsurgical changes of prior right…” blah blah blah… “Several foci of nonenhancing T2 FLAIR signal hyperintensity”… yeah yeah… “Volume loss within the right postcentral gyrus…” Wait. What? Volume loss? Does that mean I have actually lost some brains? Say it isn’t so! Good thing I don’t drink, because apparently, I’ve got fewer brain cells that I can afford to destroy! HA! Oh, wait… good news… “Stable likely post operative thickening…” WHEW! Thicker in one place. Volume loss in another. It all balances out… right!? 😉 In all seriousness though, the only thing we’re really interested in is this: “No evidence of disease progression.” Aaaand this: “Stable size of 6mm focus of enhancement within the right…” blah blah blah… “Stable adjacent small amount of FLAIR signal abnormality.” Well there’s a term you don’t want to see in a written description of your brain. Abnormality. As if we didn’t already know that without an MRI. Am I right? Ha ha ha! To be perfectly clear, this is an excellent report, given my brain’s previous history of tumor activity! That stable 6 mm “focus of enhancement” has been there since August 2015. It was gamma radiated in February 2016. After expressing my desire for it to finally just GO AWAY like the others did, my brain genius so eloquently responded… “Yes, but that critter is dead!”. Ha ha ha! I so love these people. “Critter”. This must be a technical sciencey kind of term left over from his days at MD Anderson in Texas. If this little “critter” doesn’t go away by my next MRI, I’m going to name it. And I’ve already got one picked out. Since this wee bugger reared it’s little face on the MRI immediately following the departure of my initial medical oncologist, I’m going to name it after him. I’ll let all y’all (that’s a Texas thing) know, if “Mike” is still in my brain shortly after the New Year!
Body: The chest/ab/pelvic scan is once again, “no evidence of disease”! The body has been clear for nearly 2 years. Sweeeeeet! My immune system is keeping up the fight quite nicely, even with the Keytruda no longer flowing into my vein every three weeks. This is fabulous. Kudos to my little immune cell soldiers! Booyah b**ches!
Now if they could just baaaaack it off a tiny bit on the joints, I’d be in fantasmo shape! My blood labs are definitely showing that the stiffness and ache in my joints isn’t “all in my head”. Bloody proof that I’m not totally crazy! My rheumatologist has me on a DMARD (disease modifying anti-rheumatic drug) called sulfasalazine. While not a perfect solution, this is the most ideal drug we could find, given the difficulty of balancing the situation. I have been up… down… and all around the interwebs seeking info on this particular drug. I’m searching for both its efficacy in the treatment of “inflammatory rheumatological diseases”, as well as its negative effects on the immune system, specifically the recurrence of melanoma. Thus far, this is the best I could find – “Interestingly, among patients with prior melanoma, 3 out of 17 in the TNF inhibitor group developed an incident malignancy (of any kind) whereas 0 out of 10 in the DMARD group did so.” However, knowing that research is ongoing, I will continue to seek and learn what the latest developments may be. Just this morning, I stumbled over a medical abstract regarding how these autoimmune side effects differ in behavioral characteristics from those of an individual with an organic/traditional development of rheumatic diseases. Soooooo… more reading for “Doc Kozak” to do!
On the fluffy side of life —-
I’ve rummaged up all of my hockey gear, and have cleared it of cobwebs… and dead hornets. Ewww. As these joint pains begin to fade away, I have plans to get myself back onto a rink (roller and ice) to push pucks around. Before you think I have completely taken loss of my senses (refer to clean brain MRI above), I have no plans to compete in games. I just want to pretend that I’m not about to be 48 years old, and go back to some of the fun of tinkering around with sticktime. Something about having two additional holes in my cranial bone has me a bit timid about going into full contact mode of game situations. But… that doesn’t mean I have to get all “timid old lady” either. Sooooo… hockey sticktime, yoga, hiking, and of course… cycling, will all be back into normal rotation very soon! I’ll try to keep in mind my rheum docs firm… ummm… suggestion… that “Perhaps 14 miles is more than your knee should be doing right now. We are trying to REDUCE the swelling. Yes?” **throws head back and looks at doc with exasperated “uuuuugh… ooooookay”**
October 28, 2016 —
Brain: MRI is just over a week away! Feel free to begin crossing fingers and toes… perhaps braid your hair if it’s long enough. : )
Body: It’s CT time again! The next chest/ab/pelvic scan is next week. The body has been “no evidence of disease” since January 2015, when the final chunk of melanoma meat faded away from my left lung. I don’t typically have much concern over the body scans, but this time is different. Since having to stop Keytruda (cancer killin’ juice) in early July, we are now relying on my immune system to keep up the fight on its own. It is perfectly capable of doing this for many many years to come, particularly since I seem to have “over responded”, but we’re never quite comfortable with expecting to see clear scans.
Since the start of Keytruda (Nov 2014), my immune soldiers have become quite adept at recognizing and destroying melanoma cells… which is good. However, the little bastards seem to have gotten a bit bored, and have begun attacking perfectly good cells… which is bad. They’re behaving like a two year old who has been told “No”, but looks mom straight in the eye, and proceeds forth anyway. I am now plodding along with what we have come to know as irAE’s… also known as “immune related adverse events”. The pancreatitis somehow managed to resolve on its own, once the Keytruda stopped pouring in. Thank goodness I was never much of a drinker! The worst of the issues at this point, are the achy and inflamed joints I’ve been whining about. Unfortunately, the “answer” to problem repair is corticosteroids, or other immunosuppressant medications. This is an area of much debate among the medical oncology field. How much can we suppress the immune system before it negatively affects the cancer killing properties of the Keytruda? With a tidbit of mela-meat still visible on the last brain MRI, my team and I are unwilling to put that question to the test. Soooo… onto the scene enters Dr. Savvas… welcome to “the project” Rheumatology! We already know that my blood labs have shown inflammation. We have confirmed that my ANA is “positive” (which is really a negative thing). More bleeding into a tube will be done next week, which will perhaps shine a more pinpoint light on exactly what we’re dealing with, and how it can be managed without the use of anything immunosuppressant. I’m like a walking talking biochemistry puzzle! Fun for them… right!? You’re welcome docs! ha!
On the fluffy side of life —-
Mama and baby deer are still hanging around the yard with regularity. Baby can now be confirmed as a GIRL, and she is nearly as big as mom! All of her spots are long gone, but the inside of her ears are lighter than mom’s, so I can still distinguish between the two. And while we’re on the subject of two beautiful creatures…. LOL… Frank and I recently celebrated our 29th anniversary. As good fortune would have it, we were out to the Air Force Academy in Colorado for his VERY WHIRLWIND 30th Class Reunion. While we didn’t have much time to squeeze in extras, we did slip over to the Community Center Chapel where our wedding took place. We snapped a few photos out front, before a very kind gentleman working inside, gave us a tour of the remodeled chapel and took our picture there as well. It was odd to see the place looking so different, but a cool opportunity to be back, which we had not done since our wedding day in 1987. We’re a bit burned on airline travel for the year, and plan to enjoy the upcoming holidays here at home with mama and baby deer. ; ) We’re always open to visits if you miss our sickly sweet personalities. The guest room is kept fresh for company, we can make you a great cup of coffee, and the toilet is scrubbed daily. Buuuuut… let us know you’re coming, as we do not answer the door to anyone unexpected… not even if you give us the pity eyes through the side windows! Mama and baby have hardened me to the pathetic look. ha!
September 16, 2016 —
Short and sweet update, straight to the top questions of concern this month.
The latest med news——-
Brain: The follow up higher resolution brain MRI looks good! The “mystery spot” turned out to indeed be image artifact, and was not visible on the new MRI. Next check… 9 weeks! Boo-yah bitches! There is still a little something remaining of the lesion gamma radiated back in February. Goodness me… that little critter is getting to be annoying. It is the only thing between me and a perfect brain! It’s not growing, but, it also is not shriveling up and going away as allllll the others have done. What remains has been blasted with gamma radiation and is not showing itself as being a threat… buuuuuut… it only takes ONE live mutant cell to continue the whacked DNA replication process. I would be more than pleased to have my over stimulated immune system devour this little lesion’s remains. Heaven knows my immune cells seem to be going bat sh** crazy with boredom, and taking on things that there is no need to! Whiiiich brings me to the body………
Body: My CT from 2 months ago was clear of any metastasis (aka “no melanoma meat”). Aside from showing some mild developing pancreatic issues, things look just lovely for a black and white digital image. Next chest/ab/pelvic scan is due mid to late October. Other than the ghastly colon cleansing of the contrast “smoothies” and the pile on effects of radiation, I don’t much mind CTs. The process is over quickly, and I know that the likelihood of seeing anything suspicious in the body is far lower than seeing new meat in my head.
Blood work is getting back on track. One of the pancreatic enzyme levels is in range… the other… well… it’s coming down rapidly, but we’re not quite there yet. At least the guts FEEL ok. No more pain, and no more need for Pepcid. Thyroid is at a comfortable level, and muscle proteins are all in line! For the next test, we’ll be peeking at inflammation levels. Something has to be causing this joint pain. I’ve missed 3 Keytruda infusions now, and yet, my immune system is still on the attack! I hope that it is going after melanoma cells as fervently as it is rough housing other parts of me. Pretty much everything hurts. The really horrible zones….. my knees, hips, right shoulder, neck, left jaw, right elbow… and the cherry on top… my nasal cavities! My nose has been stuffed since August 4. I snore like a bear, and have to chew with my mouth open. I am quite the picture of attractive lady. Poor Sir Frank. On the bright side, because it is a challenge to eat, and food tastes generally “meh”… I don’t eat much! Which is great, because with the joint pain, and tight airways, my exercise is seriously minimal as hell. If I could eat a pan of weed brownies and still ride my bicycle in a straight line… Hmmmmm. Maybe get me some Breath Right strips in neon green… HA HA HA! KIDDING!
That’s all for now. The birds need seed cups filled, and mama deer is giving me the “Por favor… una manzana. Te lo suplico!” pity eyes. Plus, it’s ibuprofen time, or NOTHING on my “to do” list is going to happen. Moving like an arthritic snail means reseting my mental clocks to allow a LOT more time for each task!
August 17 — BRAIN UPDATE…
I can’t really say this is much of an update. It’s kind of “the update that wasn’t”. I had my brain MRI as scheduled this week, and things were “off” from start of the procedure, right up to the end result images. I’ve lost count of how many times my head has been placed into an MRI machine. Suffice it to say, we’re probably over the 40 mark. As you can probably imagine, this has made me quite familiar with the process. Through pure repetition, I have learned just about how long it feels to be in the machine. I know about when there will be a pause in the process for the contrast injection. I’ve also become entirely too comfortable with what sounds the machine will make, for how long each noise will last, and in what patterns each of the distinct sounds will occur. This last MRI didn’t follow my known process “rules”. I can’t definitively say that the oddities of this MRI have anything to do with the resulting images. I don’t know if the machine was “acting up”, if the tech was new, or if things were perfectly normal for this particular facility. I can only say, that it all set the stage for the puppy head tilt response that I had to the doc’s report of what they saw on the images.
Here’s a little tech talk background info for you to better understand the cause of my confusion…… For my routine follow up brain MRI’s, the head is “image sliced” in two directions. One set of images are slices going from my face to the back of my head (“coronal plane”). The other set of images slice from the crown of my head down to my neck (“axial” or “transverse” plane). The image slices on each plane, are about 2 mm apart. Imagine you have sandwich sliced a ham… you can see the “images” on the front of each slice, but cannot see anything contained within the 2 mm of solid meat, that composes each slice… those are the “voids”, the image gaps. With one set of slices running front to back, and the other set going from the top of the ham down to the counter, you will see that there are intersecting cuts. The same is true for the MRI pictures of the brain. Looking at image slices along both axis gives the docs and radiologists a way to view the size of a bleed, lesion, foreign object, etc. in two directions… ex: height and width. It’s not a perfect 3D model, but is a good way to rough map what they are dealing with. However, things become a little more tricky in dealing with the “voids”. The 2mm gaps in between slices…… think about that solid meat you can’t see into. The image gaps are where things can exist hidden… ooooor… where things may not exist at all. Hmmmmmmmm.
Ok, now that you’re feeling totally educated and ready to rule the world, I’ll throw the puppy head tilt at you… When going over the images with us, the docs noted a tiny (about 3 mm) “spot” in one image plane (I can’t remember if it was axial or coronal)… BUT… in it’s perpendicularly corresponding location on the other plane… we don’t see anything. Whaaaaaat? Yup. Confused puppy head tilt. What does this mean? Well… it could be nothing. This spot may be an image “artifact”… a computer blip… something that isn’t actually in my head, it’s just on the image slice. OR… it could be something. A tiny blood splotch? Something too flat to appear in the opposing dimensional view? OR… a something tumor. There is a possibility that this is indeed a tid bit that can be seen in one plane, but is very flat, and “hidden” in the 2 mm gap between images on the opposing directional plane.
Sooooooo… my brain is either clean, clear, beautiful, and looking perfectly brand new and disease free… ooooooor… this could be a new pain in the a** tid bit that we need to fry. We will not know until I get a new MRI, with tighter (more) image slices, on my next visit. Cross your fingers that this spot simply does not exist, or resolves on its own in the next 3 weeks!
August 13, 2016 —
I’m not sure if this is a late update, or an early one. We departed for Spain the day after my last appointment, so I never filled anyone in on the med news from that visit. Buuuuut… I’m due for another follow up next week, as well as a fresh brain MRI, so really… I’m jumping the gun, because if I were to wait another week, I could give you all of the upcoming new news! Since I have nothing new to share on the brain front, I will use the space to whine a little, and then tell you about Spain.
Here we go!
The latest med news——-
Brain: SEE UPDATE ABOVE…. Getting a follow up MRI in 3 weeks. We’ll revisit this when I have new news to share.
Body: My last CT noted some mild issues developing in my pancreas. Overall, I hadn’t been troubled much by symptoms. However, in hindsight, and after a few chats with the docs, there were some signs. I’m one of those people who goes from “not an issue” to “ER visit” in under 60 seconds. Fortunately, because of the CT results, I knew to note even the slightest oddities and take actions to prevent any need for seeing the inside of the ER.
Three more weeks passed, and the guts were doing “ok”. I had picked up a daily Pepcid routine, watched my diet, discontinued the once per week Imodium, and dropped any/all NSAID (ibuprofin, asprin, naproxen) use. This is where the whiney part begins……… My neck pain returned with a vengeance. The odd muscle pains that began in my legs two months ago have now spread to my shoulders, back, and left jaw. What the hell? But hey, my pancreas is feeling happy… right?
A few weeks of feeling like I’d fallen off the back of a moving pick up truck and run over by the bus tailgating it, and it was time for pre-appointment blood labs again. Pancreatic enzymes are elevated, and not just a little bit. Iron levels are low. Thyroid TSH is finally in range, and T3 is barely in (low side), but now the FT4 is too high. Muscle protein levels seem normal. What happened to my body being “like a machine!”? We’re doing what we can to keep the pancreas calm. The thyroid will have to be watched. The gastro issues are definitely causing a conversion problem from T4 to the needed T3. I know the symptoms to watch for, so this doesn’t worry me. The muscle/joint pain is weird and unaffected by exercise levels. It is a listed side effect of Keytruda, but in a poorly explained manner on their official website. They list symptoms for lungs, liver, kidneys, pancreas, thyroid… and then… there are “problems with other organs”. Persistent muscle/joint pain falls under “other organs”. Pardon me? I have more questions for the doc next week.
Needless to say, with all of the above going on, and the immediately pending trip overseas…. The docs and I (hesitantly) decided it was best to forego a round of immunotherapy. The drug is still so new to FDA approved (outside of trials) use, that there really is no set protocol on when to stop treatment. Using trial patients as a guide, doctors have generally kept patients on Keytruda from 18-24 months. My body has pretty easily tolerated the infusions for 20 months… until now. Soooo, we have entered uncharted territory. Part of me would love to be in “follow up” mode, rather than active treatment. I’d like to see my GI track get back online, which will hopefully settle my thyroid game. I want to protect my pancreas from permanent damage. I would be happy as a pig in cool mud to have these muscle pains cease. However, I still have grand mental discomfort with leaving my immune system on its own to defend my brain from the rampant metastasis like we saw in 2014. My brain and I have trust issues. It’s tried to kill me ten times now! I’d evict it like a horrifying tenant if I could, but like those tv commercials where “the heart” threatens to leave…… I kind of need it. Damn it.
I’ve got a couple of interesting appointments coming up next week. I have too many questions to be answered before I can say where things currently sit. If my body has decided that it has had enough with the Keytruda, my immune cells had better be in vigilant “seek and destroy” mode for mutant melanoma cells.
The rest of life:
Spain was fantastic. City sidewalks and streets are so clean! Much more so than here in the states. It seems as though the general population there has more respect for their surroundings. Restrooms are clean (even at gas stations!!!) and autopistas (highways/toll roads) are garbage free. In all fairness to Americans, we did note some tagging in downtown city areas. Which brings to question… what is with vandals? Do they attend some secret worldwide school to learn how to spray paint letters in the same font style? Bloody amazing how identical tagging is here across the Atlantic. Perhaps there is an internet course for “street thug” graphic communications. Hmmm.
The most asked question we get… “Where did you go?”. Here was our path: Barcelona, Zaragoza, Bilbao, Santander, Onati, Olaberria, San Sebastian, Pamplona, and back to Barcelona. Cities, tiny mountain towns, and everything in between. We traveled by Jeep, with Frank being the “conductor”, guided by our loving Spanish GPS. It was a daily adventure!
A few things to note:
1. The countryside of northern Spain closely resembles California from the coast at Morro Bay, to the mountains of Lake Tahoe, and all of the hot-n-dry in between!
2. Eggs are not a breakfast item, but you will find them ALL other times of the day, and on EVERYTHING, including the “veggie” sandwich.
3. The “veggie” sandwich —– boiled egg, jamon (their odd tasting ham) or tuna, mayo, a slice of iceburg lettuce, and a tomato. Yes, you read that ingredient list correctly.
4. Dinner is not served until at least 8:30 pm. Prior to that, you eat “bar food”, or “pinxtos” as they are known in Basque country. While they are tasty, ready immediately, and typically of wide selection (depending on the bar you are in)… they’re basically fancy baguette bread with tuna, salmon, and cheese. I know your asking… “Niki, are there any veggies on ’em?”. No.
5. Hotel and B&B beds are located as close to floor level as humanly possible.
6. Parking spaces in the city are made no larger than matchbox car size. If you rent a car, ask for a Fiat. And while driving, make damned certain that you only use the left lane for PASSING. I understand that is the intended use here in the U.S. as well, but these people actually follow that general rule! Whoa. Polite drivers? Shut up. Yup. True. They also use turn indicators and only honk their horns to prevent collisions. I know… it freaked me out too.
7. Ladies on scooters will risk their lives weaving through traffic in cotton skirts, with free flowing hair. They’re generally polite, but absolutely insane with zero speed modification to account for traffic conditions, and no helmets to mess up that beautiful long hair.
8. Rollerblading is a form of commuting in the city and is quite popular recreationally. This may be the single most reason that drives me to move there permanently. Ha!
9. “Facecloth” size towels are NOT intended to be used on your FACE. Please note their proximity to the bidet… because seriously… there is not enough bleach in the world to get them clean enough for contact with your eyes and mouth.
10. People are generally thin. While they don’t seem to believe in vegetables (other than potatoes) with meals, their portion sizes will satisfy without leaving you feeling full. Need more to eat? Well… America has shown its influence in city areas. You will find McDonalds, Burger King, Subway, and KFC readily available. Yes, we’re ruining Spain.
11. Neon and super tall lighted signs do not exist. Anywhere. You must have eagle sharp eyes to locate street names, and the food services on highway exits. There will not be a bat signal like “M” indicating where the McDees is. Nor will you see billboards or television ads for food.
12. People do not have their faces buried in their cell phones. It’s insane. They actually speak to and enjoy the company of their friends and family! Whaaaaat!?!
13. They LOVE modern style. Apparently when you come from an area rich with historical architecture, tall glass skyscrapers are of great beauty. Even the interiors of hotels are furnished and decorated in very trendy style. The outside will blend with the exterior “old school”, but inside… prepare for minimalist modern.
Overall, we had a great time and loved the country. There are plans to return, possibly next fall, with a visit to the south end after the heat of summer has passed. It will be sometime before we forget what it feels like to hop off of a 5 hour flight and onto a 9 hour flight. The next visit will certainly include more trips to local “mercados” (grocery stores) for fresh fruit and veggies, and perhaps more time in small towns than city areas. I might even pack my rollerblades. I already miss the coffee and morning croissant. **sigh**
July 11, 2016 —
I think it’s going to be “one of those days”. In a good sense. Do you ever wake up just knowing that your perspective is in the right place, no matter what comes your way for the day? Today, I opted not to watch, listen to, or read any news. Yes, I am completely, ignorantly oblivious and happy. Did I care about the news when I was in kindergarten? Nope. What mattered was what was happening in my face, in each moment. I am not “adulting” for a little while today. Must be nice huh? Yes. It will be. It can be for you too. This isn’t an everyday thing, but can be a today thing. Every person should set aside some time to “waste”. Don’t plan anything… that involves commitment and timing and thought. Just… be. Reset your inner kiddo, but without the “Moooom… I’m bored!” part. Hell, if you can find a swing set and not come off “creepy”, go for it!
Sure sure, I made the bed this morning. I’ve also made breakfast, unloaded the dishwasher, cleaned the breakfast plates and swept the kitchen floors. But now, I’m watching mama deer nap comfortably under a shrub. Mr Raven is happily bounding around the yard picking insects from the lawn. Mr Quail has made a nice little divot in which to take a dirt bath. The hummingbirds are zipping about the lavender bush… aaaaaand… there is a little faux-hawk topped titmouse (it’s a BIRD… yes, the name is real) smacking his face against a branch, attempting to crack open the spare sunflower seeds that the ravens left behind. What are my plans after soaking in the wonder of Ma Nature’s critters? I dunno. Eventually, I should get to the grocery store. Buuuuuut, if the hubs comes home to find me in a blanket fort eating ice cream…. whaaaaaatever. Hey, the brain MRI was clean. That allows for some leeway in abnormal behavior without setting off panic alarms. 😉
The latest med news——-
Brain: Not much to mention here. It seems as though the most ill behaved part of me is now the most nearly normal! Next MRI is due mid-August. Obviously, the biggest hope is to again see “no new lesions”. Second on the wish list, is the disappearance of that little mala hierba (bad weed) in the right frontal region. It isn’t causing me any difficulties, but I would prefer it no longer be visible on standard follow up imaging, prior to stopping immunotherapy treatment. It’s a comfort thing. It takes but one wee little live microscopic mutant to settle in somewhere and begin setting up shop. Then comes “the spread”. The track record for my rate of brain lesion spread, shows that these little buggers multiply faster than inbred mice hopped up on green M&M’s! **shudder** Not that it would be the end of the line if something new comes up after Keytruda infusions conclude. I can always go back to getting infusions. Though it would mean another round of gamma… and I much prefer visits that don’t involve pointy objects near my head! Nooot that I don’t appreciate my gamma team and the mad skills they have shown in clearing my cranium… buuuuuut.
Body: The most current chest/ab/pelvic CT looks good. There are no signs of tumors. Nothing new, old, or otherwise “suspicious”. In fact, I went back over my records (yes, the anal retentive, over organized patient has annual binders of lab and imaging reports), and have found that the CT reports have shown no evidence of disease since early January 2015. Technically, the November 2014 report was summarized as “all clear” as well, but I have the image cd, and I could still note the tiny bit of left lung lesion at that time. Not that I second guess the professionals… ok… yes I do. I do it all the time. Nobody is going to be as “paranoid careful” with your body, as YOU. The really good docs are more than happy to ease your mind, show you images, and answer 30 minutes worth of endless questions. Let me caveat that by noting you should not call into question their skills or knowledge. However, their ego should allow for you to ask them to rationally (and if need be “dumb down”) explain why they believe their action or situational assessment is accurate. Ok… boring tangent lecture over…
This latest CT noted the stable cyst on my pancreas. From what I have researched, these are not entirely uncommon. Many of you may be sitting there unaware of the oddities within your guts. On the positive note, the cyst is not growing, and has been there since my first ever CT in April 2013. NEW to the conclusion section of the CT report is “development of mild pancreatic ductal dilation”. Huh? In blonde terms, something is blocking the flow. Could be gallstones. Could be early signs of pancreatitis. It’s mild at this point, and basically asymptomatic. If not for the CT, I would have chalked things up to an overabundance of pizza, or a small ulcer from new anti-inflammatory I was on. Anyway, we’ve done some further blood tests, to check on enzymes and ensure good pancreatic function. In the meantime, I quit taking the NSAID. I’m not a fan of pills and my neck hasn’t been unbearable, so why irritate my already sensitive GI tract? Trust me, when your guts aren’t happy… you are not happy! Ha!
As for “the usual” blood work, this damned thyroid is doing it’s best to annoy me. It’s been nearly a year of increasing the synthroid dose, waiting for it to establish itself at the new level, and then examining results. My tsh (thyroid stimulating hormone) levels are still high. What does that mean? Combined with my in range FT4, it means I’m hypothyroid. Tired, pudgy, chilly… sometimes irritable (yes, it happens! Whaaaaat!?!), aaaaaand, it might explain the muscle aches that have decided to come to the table now too! Seriously. It’s as if karma is trying to test my limits. “Ooooh… I see we’re out on the bike again. Oh, and hiking too. How fun! But guess what… ummm… no. Sit down and act like a cancer patient.” I don’t think so karma.
I. Don’t. Think. So.
Plans are rolling for Spain. It’s really getting real! I’m so excited for this trip, I can hardly stand it! I have seen a TON of the U.S., but have only barely dipped my toes into Canada, and have otherwise never been out of country. Not looking forward to the loooooong flights. Hopefully I get an aisle seat. Otherwise, I pity the poor soul blocking me in. They’re going to be SO unhappy with my GI function. I wonder if I can convince them to install a seatbelt in the lavatory and just allow me to fly seated in there…. Hmmmmmm.
June 17, 2016 —
Wow… settling into this “retirement” mode has been a project. How did I ever get anything done when I had to be at work each day? It seems as though my to-do list is unending! Obviously, my efforts toward New Normal site updates has been limited. **yeeks** Believe it or not, I have been working on things in the background. The new pieces are just not yet ready for public access. 🙂 Planning and mapping how I want pages laid out, researching content, building graphics… these things all take time. Aaaaaand, as much as I would love nothing better than to plop on my backside, eat bon bons, and peck away at the computer all day, my muffin top would get all out of control! I’d like to blame the extra pounds on the hypothyroid. Buuuut, let’s be real, my bicycle has become a stranger of late. It might be time to build myself a fitness plan. I’m always better when things are mapped out and organized. 🙂
The latest med news——-
Brain: The MRI from earlier this week shows NO NEW LESIONS. Yes! I could hear the docs mumbling as they were coming down the hall. The door opened, and in they walked with big toothy grins. I instantly assumed that meant good news. These are not the kind of gentleman to bounce in the door all smiles, only to change game faces and give a patient devastating news.
This visit’s resident on rotation is one of my favorites. Although my visits to the brain genius have decreased in frequency, I have managed over the past 3 years, to meet all of his current “minions”. I’m not saying they aren’t all very intelligent and lovely individuals, but I do have two who seem to fit my sense of comfort a little better. It’s likely due to the fact that these two particular resident docs have been grilled with more than their fair share of questions. It comes down to a timing thing with my rate of lesion growth and gamma patterns.
Favorites discussion aside (I’ll keep them guessing as to who the other one is)…. We picked over the images, comparing them to the MRI from two months ago. The hide-and-seek champ that we gamma zapped in February is still hanging out up there in the “right superior frontal gyrus”. It has little to no edema surrounding it, and shows no sign of growth. The most bizarre thing for me to note, is how ordinary the rest of the brain looks. I can still see where the hole in my skull (med lingo: “bone flap”… niiiice huh?) is over the right parietal area. Aside from that, when flipping through the slices, there are no signs of the other 38 tumors that, at one time, occupied space in my head. If you were to google image a normal brain MRI, mine would match it quite closely! Just one more little bit of spare meat to shrivel up and clear out. Go away little lesion. Magically disappear like those who came before you.
Body: We are normal as normal can be when a body is being infused with Keytruda every 3 weeks. Blood labs are all in range (yes yes… except the typical thyroid stuff. Ugh.) There are a few more side effects that seem to crop up over time, it has been 19 months, and I would stay on it into my golden old years if need be. That said, I am counting the minutes until this is no longer a part of my regular routine. I’m curious as to if and how quickly side effects will dissipate. I don’t feel horrible right now, but there are definitely things that I have eventually accepted as the new standard.
PA: “Any diarrhea?”
Me: “Nothing beyond what has become normal in the past 18 months since I’ve been on this drug.”
Me: “Anything more solid than mashed potatoes or less frequent than 3 times per day is a good day!”
PA: “Ha ha ha! Well ok then.”
Aaaaand welcome to my medical world Kristi! 😉 After three years of clinical visits and surgeries, nothing is private or off limits for discussion with docs or staff. I haven’t been shy since I was 9 years old. Ha!
There will be choices to make in November, regarding the possibility of stopping Keytruda infusions. Since the drug is fairly “new” to FDA approval, we are basing treatment duration off of trial study statistics. Eighteen months to two years seems to be the general consensus of when the medication and the immune system have shown to have the disease under control. My CT’s have been clear for months and months. In fact, I’ll have to see when it was that anything could even be noted on one. I may have had over a year of clean body imaging. I am due another CT in the next two weeks. I do not anticipate any issues, but there will forever be a sense of “scanxiety” over these things. The bigger issue for me, has always been the brain. I would like to see that last tidbit clear out before stopping infusions. I’d simply be more comfortable knowing that anything left in my system is too small to show up on standard scans. Should something crop up after the fact, I could always go back onto Keytruda treatments. But, somehow, starting again seems more mentally difficult than waiting it out and making the leap after every 2 millimeters (MRI joke) of me appears to be “no evidence of disease”.
New CT results coming in a few weeks. In the meantime, plotting and scheming for a loooooooong anticipated vacation, getting new portions of the site up and running, aaaaand… of course… spending time with friends (online, email, and for some… real life in yo’ face!). Find happiness, even if you must do so in little bits and pieces. Trust me, I know at least a few people today who are very likely having a harder go at life than most. If they can find moments to smile, so can you. 🙂
May 11, 2016 —
May begins my new adventures in temporary retirement! The loss of morning routine is forcing me to restructure. I’m trying to balance the idea that “there’s always tomorrow” with “don’t waste a moment”. There is so much I want to do. So much I need to do. So much I should do. Mostly, I spend my days scatter brained and disorganized with too many possibilities to prioritize! Doc visits, graphics work, household chores, errands, visits with friends, me time, exercise… the list goes on and on! Boredom has never been a part of my vocabulary. While I do not yet miss regularly scheduled work hours, I will have to find a way to best make use of my time. Anyone who has known me for more than 5 minutes, will recognize that I am not really the “fly by the seat of my pants” type. I am capable of enjoying last minute escapades, they just aren’t the norm. I am a planner. My email calendar has appointments marked in it. My cell phone calendar has those same appointments displayed. Add to those date lists the things written old school style on a wall calendar! Once again, I circle back around to finding balance. I need structure to keep my OCD brain from slipping into madness or utter laziness! How do I plan unstructured time and not end up just sitting around wasting it? Does that make sense?
Now that you’ve had a tour of the deca- gamma radiated blonde mindset… let’s cover the med facts…
Brain: Fine and lovely. Unless I show any new neuro deficits, I will have no further news in the cranial department until mid June when I have a routine follow up MRI. It astounds me to be able to say that. My brain has become as routine and behaved as the rest of me. Whoa. Well… let’s don’t be totally crazy here… the tumor activity in my brain has become more routine and behaved. **insert sly grin here** I know you were all thinking it, so I felt compelled to clarify.
Body: Running it’s typical course. Not due for another CT until July. Until then, my biggest challenge is dealing with the same old thyroid issues. Without getting too deep into over-share mode… I’ve begun taking probiotics, with the hope that they will resolve an underlying side effect which may be contributing to the T4 to T3 conversion problem. I know it makes doctors cringe when people tell them what they found on the internet. No, I don’t believe I know more than an MD. Buuuuut, I do believe that with some solid research and confirmed reliable sources, I’ve learned a lot about how MY body operates. Blood labs over the past few months have been very interesting. In a twisted and very tiny way, I’ve turned myself into my own guinea pig… errrr… umm… I mean “research facilitator”. ; )
C-Spine (neck): This area was imaged on my last trip to USC. Results show that the discs and nerve openings from C2 down through C7 appear to be in fine shape. Even better news… there are no tumors growing in the region! WHEW! So, what’s causing this raging pain that keeps me up at night? Knowledge bomb is about to be thrown down here, pay attention for a learning opportunity — Discs do not exist between C1-C2. I did not know that. Did you? Admit it, you feel just a little smarter now, don’t you? Yup. I thought so. Anyway… I have some degeneration between C1-C2. More specifically, the atlantodental interval. The whaaaaa? Yeah, Google turned into my best friend this week. I’ve looked up all that I can find about this region, including videos targeted at medical students. That said, I think the conversation of “What the **bleep** is causing this?” will need to be brought up with someone who has a well earned MD. Is my head off balance? No… seriously. LOL! Is my head literally off balance? Could degeneration in that region cause these kinds of issues, and if so, what can I do to make it stop? Short of trashing my liver with even more meds, what ELSE can I do? I’m not known to be a wuss, but this has to stop. My bike misses me, especially when it has to watch me ride the indoor trainer. I’m sure it’s plotting two flat tires for revenge on my next ride outside.
Overall, life is lovely. Not just in that bullsh** “Facebook lovely” sort of way, but in a very real sense. I have so precious little to complain about. I’m going to be expanding this site soon. For a very long time, I have wanted to include a “Healthy Living” section. Recipe ideas, enjoyable ways to burn some calories, ways to work toward positive mindset… etc. I’ve even bounced around the idea of incorporating some video. I’d also like to do “The Lighter Side”…. funny quotes, random life blogs… things to make people laugh when they’re looking for a much needed smile. A little healing humor. But first… balance and organization, or none of this is going to ever get done.
April 20, 2016 —
The crossed fingers and toes mixed with positive juju vibes worked! Three years to the day of finding out the hard way (literally hard… hitting the floor leaves bruises) that I had brain tumors, my brain genius was able to deliver good news with a full grin. No new tumors. WHEW! Not only that, but the surgical areas from April 2013 and April 2015 are hardly visible. But we’re not stopping there! The tiny little hide-and-seek champ of a lesion that was gamma radiated in February is smaller, with very little accompanying edema.
Me: “Smaller? Already? It was barely the size of a grain of rice!”
MY Brain Guy: “Yeah, well, now it’s an even smaller grain of rice!”
BOOYAH! This was extra good news. Not only because I’m still alive three years later… which is HUGE in and of itself… but because the appearance of that little bugger seems more of an anomaly or “left over”, rather than what I feared was a preview of worse things to come. That’s not to say we’re completely in the clear. The scheduled immunotherapy treatments are still on track through November. My brain looks “almost totally normal and brand new”, but until it is spotless (literally and figuratively), I plan to plug along with the immuno arm jabs every three weeks.
The radiology report from my full body CT confirms what my doc and I saw while reviewing the images… NOTHING. There is nothing growing in there that shouldn’t be. Blood labs are looking just lovely, although there is still a bit of an issue with my thyroid. Although we’ve increased the levothyroxine dosage, I’m still hovering in the just slightly hypothyroid zone. A second lab test has been added to the mix, and seeeeeems to be confirming my suspicions. Thyroid treatment can be tricky, because results take time to show up on blood labs. We’ll see what the numbers show in another 6 weeks, but I’m pretty sure my converter is on the fritz. I won’t bore you with the details of how thyroid function happens and how that affects the body. I can hardly keep my own eyes open when reading about cause and effect in that system. Suffice it to say, should the lab numbers confirm my suspicion, I might be somewhat difficult to live with. The ego swelling and thick headedness of the “I sooooo called it!” could get old quite rapidly. HA! I might ask to be an honorary resident. Doc Kozak BsMD. Ha ha ha! 😉
One final note on the medical front before we move on to life in general…..
I’ve had a pain in my neck for about 6-7 weeks. No, not Frank, an actual pain. I suspect that it is related to an old hockey injury. However, since the chronic nature of it is new, my docs feel it is best we take a closer look at the area, to rule out any chance it is due to tumor growth. My CT’s cover from my shoulders to mid thigh. My MRI’s have been brain imaging only. Hopefully in the next couple of weeks, we will have insurance approval to look at the “unexplored” area of my neck. Cross fingers and toes again for good news on this front. I can deal with “You’re old. Discs are squashed and useless.” A little PT, a massage here and there, some strength building….. good to go. I would certainly prefer we avoid any further major surgeries. 2013 craniotomy. 2014 lung lobe removal. 2015 craniotomy. Can we please keep 2016 cut free? Please.
Alrighty, medical news aside, there will very soon be a big life change. No, I’m not pregnant. Karma doesn’t completely hate me. Don’t be crazy. This news has been coming for some time now, and was confirmed via email last week. I will no longer be doing mornings on Sunny Country. Yes, seriously. Our station was purchased last month, the closing and exchange of ownership will officially take place on May 1st. I do not want anyone to be surprised, and would hate for anyone to fear that it is due to a declining medical state. I am FINE. I have had some very enjoyable times the last 14 years, and although I will miss some aspects of the job, I am already in the process of planning my future adventures during this time of new found freedom.
March 25, 2016
I think I might be suffering from withdrawals. No offense intended to any current docs or team members that I’ve seen during regularly scheduled visits over the last 7 weeks, but something is just… off. I haven’t seen my brain genius since the last round of gamma in early February, and with the changing of the guard in medical oncology, I’m still making mental adjustments. Funny, I always thought that it would be the docs who would miss seeing me, long before I would feel any ill effects of not seeing their comforting faces. Ha! I just had blood labs come back all within range, or I’d swear my glucose and iron levels were far too low. There has to be some biological explanation for this. Perimenopause, or maybe that damned “spring forward” of the clocks!? Why am I being so nice? And how on earth did I so willingly put on a dress…. in PUBLIC? What’s going on?!? Are pigs flying now too? Oooooh… perhaps Hell has frozen over? I’d rather that be the case. We get too much fog for me to avoid a head strike from any pork lacking the proper flight instrumentation. That could get dangerous. Whereas, a frozen infernal region, would be perfectly acceptable. I already own skates, and I’m rather certain that my ticket was punched many years ago. ; ) Let me just grab my hockey stick. HA!
In all seriousness, I am physically just fine. Blood labs look good. Routine follow ups with primary care doc and medical oncology went well. Keytruda infusions have continued as scheduled. I had a chest/ab CT two weeks ago, which appears to be clean. I picked through the images myself… briefly considered where I might take a class in radiology to learn to read them properly… and then went over the scans with my medical oncologist. If there is indeed anything there, it is nothing alarming, and is doing a bang up job of playing hide and go seek.
I am scheduled for a gamma follow up brain MRI in mid April. It falls on the exact 3 year mark from the day I first learned that I had tumors in my brain. I’m still uncertain as to how I feel about this. Is it a good thing? “Yeah! I’m still here after three years!”. Or is it a bad juju date for me? We’ve certainly come a loooooong way in those three years. No matter what this next follow up appointment holds, I will be far better equipped to handle it. Not that it is ever easy to hear one has runaway cell growth within the confines of the cranium, but it most certainly does not hold the gut punch of hearing it for the first time. Cross fingers and toes for “no new tumors” on April 12! The good news, any which way you slice it, is that I’ll get to see much of my brain squad again that day. I’d rather they be smiling… but I’ll take it either way. : ) As to the rest of the faces I’m missing… I’ll be making a bonus trip down with a friend for her specialist appointments. While she is busy with the docs, I’ll be making some rounds. : ) This leaves me with only one loose end to…. ummm… tie up. I’ve got an alibi, an accomplice, and a trunk full of donuts. Houston anyone? HA!
February 12, 2016 —
I’m not even sure where to begin this update. The last few weeks were quite a ride. It is most certainly my typical modus operandi to remain busy and distracted from what are, at times, the unthinkable realities that now compose my life. Not in a sense of busy to deny, but more as a way to continue living with some sense of normal and purpose. But wow… there are weeks (sometimes entire months!) that I can be a self imposed “over scheduler”. I sometimes, wish that I were capable of being more of a carefree slacker. It seems that is the most blissful and easy way to exist. I’m just not wired that way. Forget to get something done? Meh. Just didn’t feel like doing it? Meh. All is going to hell in a handbasket? Meh. Let somebody else worry about it? OH GOD NO! Maybe I should have slipped the gamma team a few extra Benjamins to target the “responsibility zones”. Ha! With my luck, those are the regions which comprise most of my brain, and it would require an entirely different radiation methodology to hit them all! Busy as things have been, there is more good than bad to report. It’s all about your focus. 😉
Let’s begin with the quick and easy —-
The “kiddo” turned 25! The Broncos won the Super Bowl! I fit in all of my graphics side work and sent it to the printer on time! I made it through a week of being the “button pusher” on the control side of the board for the morning show, and didn’t air any curse words or things that might bring about an FCC fine! I managed to fit in a yoga class (finally, some ME time), a short bike ride, a second trip down to USC Norris for a Keytruda infusion, and a meeting for an upcoming Relay For Life event. I’ve got all of my calendars synched up for the next three months of appointments, I’ve responded to many WAY overdue emails with friends, and the house is clean! Ahhhhh… Niki normal.
Now for the heavy duty stuff… onto the brain —-
Gamma went well last week, with only the ONE tidbit of spare meat to zap. This was particularly relieving news, given that every prior gamma radiation always included more than what was initially seen on the “routine check up MRI”. Allow me to describe this for you in blonde terms…… Imagine you have purchased a ham from the local grocer. You got a bargain deal on this hunk-o-porker, because the butcher maaaaay have chipped a blade when carving off this piggy piece. No problem. Cheap buy. You can get it sliced up at the deli, find any potential metal fragments, and remove them before they’re accidentally ingested, making a shredded mess of your innards. What’s the best way to find any potential shards? Thin slices. It’s the same thing with the brain. A routine check up MRI is like having your ham thick cut pork chopped. Bits can be noted, but there may still be some additional smaller pieces hiding in the middle meat. With a gamma radiation MRI, the images are “sliced” thinner….. more like a spiral cut ham.
It’s an uneasy feeling going into a gamma MRI. At that point in time, you already know that there is at least one tumor in your brain. Not good. The question that rolls around your mind, making things worse before the team “spiral slices” your brain ham for gamma is: “How many more bits of blade are potentially hiding in the meat in between?”. My mathematical pattern for “gamma tumors found” in 2014 was (more often than not), x2 +1. If the routine check up MRI showed one, the gamma MRI showed 3. Routine showed 4, that equated to 9 on gamma day. Needless to say, gamma MRI’s became very unnerving. Not this time cancer. Not this time. The routine showed one. The gamma showed one. A solo occupant. No neighbors. No friends. WHEW! One was radiated. Booyah! I’m pretty sure it took the team of geniuses longer to map out and formulate a plan of attack than it did to actually zap the lil bugger! My easiest gamma by far.
Speaking of zapping… following this 10th round of gamma, I have been asked by more folks than ever before… “What exactly do they do when you get gamma?”. Knock me out. Numb my head. Attach a frame. MRI. Map the tumor. Zap the tumor. Anyone more curious can find an educational video of the process here: What happens during a gamma treatment? Thankfully, at USC, they are kind enough to bring in the anesthesia team to knock me out long enough for frame placement. I have been awake for an additional injection of local anesthetic before. It hurts like a monster.
Brain radiation aside —-
It is back to the normal routine for systemic treatment with medical oncology. Keytruda infusions are on track for every three weeks. Despite the “recurrence” with this brain lesion, the Merck immunotherapy drug seems to be controlling things quite well. Following last April’s surgical removal of the previously radiated “tumor mush” that was wreaking havoc with edema in my head, the pathology report showed there were still potentially some live cells left behind. The desire is always for a complete removal, but in the brain, wide resection margins are NOT something the docs can shoot for. With a very real fear of damaging any portion of healthy tissue in the brain that could cause permanent paralysis or other impairments, the surgeons can only remove what is comfortable. Knowing that my pathology report had come back with the news of potential live cells left behind, we were all keeping close watch for any future growth. The hope was that the Keytruda could eliminate anything that might crop up. It seems to be doing a very strong job of that… with the tiny exception of this last 6mm tidbit in the brain. Immune function is not as strong in the brain versus its battle capacity in the body. The brain protects itself from too strong an immune response, because swelling is not good when contained by a rigid boney structure! With all of these thoughts rolling around in my mind, I am still confident that Keytruda is winning the battle overall, and I will continue to follow up with the infusions until I am either “no evidence of disease”, or a CT scan of the body shows that it is time to try something new. The next CT is due within the month. I’m not overly concerned, but there is definitely a renewed mental anxiety about things, now that the brain snapped a sizable piece of the comfort level I had gained. BUT… as we have learned from the past… worry does nothing to change a situation. We take one bite at a time, even if just to buy time for the next best option to come along. You’ll have to pardon me while I continue to smile, laugh, and soak in life’s wonderful little moments in between.
Speaking of life’s wonderful little moments… an email from my “blue Linus blanket” was perfectly timed with my need for a smile. Professional courtesies aside my friend… you know who you are… don’t be a stranger.
January 30, 2016 —
Wow… that was unexpected. After spending the last month celebrating a year of “no evidence of new disease”, my brain throws a curveball at all of us. Going back to the “What’s next” and “Are you cured” questions that I had been fielding in November and December… Weeeell… apparently “next” is more gamma. Round 10. While I understand that the gamma team was missing my smiling face in their unit, this was NOT the plan I had for seeing the remodeled facilities.
Details on this latest development ——-
The latest brain MRI looks very much like it has for the past few months, with the exception of one teeny little spot, which appears to have shown its true nature. There is growth. It is ever so slight, but is now enough to confirm that it is indeed a “new” lesion, and not a possible blood vessel. Everything else appears the same or improved. Viewing the images with the team, there really is nothing glaringly “wrong” anymore. But alas, the devil is in the details, and the detailed view shows 4mm x 6mm of untreated spare meat. Tracking back through the past imaging, we can see that the first “Hmmm… is that? Maybe. Let’s see.” appeared in August. Yes, five months ago. This means we’re looking at a growth rate of less than 1 mm per month. When we consider that I was cropping up new lesions at a rate of 4 per month (all of them twice or more the size of this one), this little beast hardly induces immediate panic. No, it is most certainly not good news, however, it is not a sign of imminent doom either. Yes, this wee little lesion is the ultimate “hide and go seek” champion. Given my competitive nature, I don’t like losing at ANYTHING, including hide and go seek. It’s time to fry this spare bit. **insert evil grin here** I hope the new folks in the gamma unit have been properly warned that the princess is on the schedule, and she will be arriving with high expectations. Ha! No pressure fellas. I’ll bring the torque settings for the head frame.
As for medical oncology… until we meet again, I am under the assumption that the routine remains stable with Keytruda infusions at 3 week intervals. The first appointment without Dr. Mike Wong, and I get news of this brain lesion. What a way to “break in” the new doc, huh? I try not to be a difficult patient. I swear! I had no intentions of giving Dr. Hu a project from day one… but I guess my brain is not as cooperative as we would all prefer that it be. Oddly enough, it seems to sense when Dr. Wong has gone out of the 500 mile range, and it really doesn’t like it. The last time he was out of reach, I ended up with a craniotomy! Hmmmm. MD Anderson is fortunate to have him. I truly am quite happy for him, although I miss him terribly already. Heaven help us all if my brain genius (Dr. Chang) gets too far out of the 500 mile range! There’s no telling what my cranial mush might decide to do! That said, I’ll be preparing a case of kidnapping supplies and setting aside some money for a flight to Houston, should anyone else opt to make a leaping career move. HA!