December 14, 2015
The popular line of questioning this month seems to be: “What’s next?”, “Are you cured?”, and “Sooo… when are you done?”. In the most short and sweet way that I can put this… If you are a Stage IV melanoma patient, each individual case will differ. I have met many folks, all with varying stories. If you are asking about me specifically… No, I am not “cured”, but I am currently free of any noticeable new metastasis. I will be on the current regimen for about another year. Next? That remains to be seen after Keytruda infusions are able to be discontinued. More scans, more hopeful watching, and plenty of life’s little moments to take in. : ) Any other questions? Drop me an email. We’ll chat. ha!
Onto the latest news……………
The three week brain MRI looks just like it did in late November. No new lesions to report, surgical sites still noted, right anterior temporal and parietal “spots” remain unchanged (both previously treated areas, not active lesions). Given that we’ve had to track 38 tumors in my head over the past 2 years, it’s nice to see that the MRI reports have dwindled down to a SINGLE page of “old news”!
“Anniversary” of sorts last week… We’ve now officially made it a year without gamma! Does the gamma team miss me? Yes. How do I know? Because I received a scathing email from one “hooligan” of a nurse for having neglected to send her any notification that I would be in the basement for an MRI last week. One might think she’d have noted the icy climactic change which accompanied our arrival at the hospital. Her hinky sensors must be slipping since turning “double nickels” a few months ago. ha! She’d have been none the wiser that we had come and gone, had the hubs not been spotted by a certain brilliant physicist who spilled the beans. Damned “family”… they’re everywhere down there! ; ) I shall henceforth keep the team apprised of our expected arrival dates. We need to let our loved ones know that we care. :-p
We dropped in for a visit with neuro-oncology this round. After a long chit chat and a full going over of the previous day’s MRI, there were still not a lot of answers, as I was told “You have passed all of the general neurological testing. You seem very normal.” HA! That said, he was going to further discuss my case with my genius of a radiation oncologist, and potentially with the tumor board. I’d like to be a fly on the wall during that conversation. At the very least, I’d like to see my doc’s response when my name and the word “normal” fall into the same sentence. Ha ha ha! He holds a good poker face, but I’d be able to read his tells. Six weeks until I meet with my brain genius again. Stretching the leash a little feels good! : )
As for medical oncology… the routine remains stable. Solid blood labs and clear scans mean we continue with Keytruda infusions at 3 week intervals. Things will plug along for about another year like this, assuming side effects remain minimal, and there is no return of disease evidence. Unfortunately, while my routine may be remaining stable, one of my favorite people is moving onward and upward. We have one more appointment with the team as it currently exists, but come 2016, I’ll be forced to break in someone new. My docs have had to discuss some harsh realities with me since early 2013, but this may be the first time that I show them tears…. and I do NOT cry. A high five is really what’s called for, but I might need to shell out a throat punch, so as not to be the only person in the room caught with watering eyes. HA! On a positive note, it is good to know people in “high places”. This change of players will enhance that little slice of my life. Besides… I am very good at e-stalking. You may run, but you cannot hide. ; )
Happy Holidays to all! May there be adventure and the best possible health for 2016!
December 3, 2015
Yes yes… so I am behind AGAIN on an update… oooooor maybe I’m just on a new pattern. Hmmmmm. Let’s roll with that excuse. ; )
Last month’s CT shows nothing of concern. I’d like to say that it was completely clear, buuuuuut… a very diligent (or extraordinarily bored) radiologist managed to spot a wee little polyp in my… ummm… let’s call it… “personal space”. My apologies to any of you who may be new to this blog. I should probably post notice at the top of the page that I tend to be one of those “over-share” types. HA! It’s a habit one picks up after so many medical visits. Nothing is sacred anymore. : ) But I digress… this polyp… I knew it was there, and plans for removal are already in the works. It is not cancerous, polyps are quite routine. However, it will be sent to the lab for assurance of that. I swear, if it’s not one thing, it’s another. I can’t seem to escape additional doctor visits, even when going in for routine oil change and maintenance checks! :-p
Speaking of additional visits….. Last month showed a great CT, in range blood labs, and a lovely brain MRI… but there were some “headache” and minor neurological episodes that have sparked the tension centers in both my hubs and my docs. It’s so easy to be the calm one, when it’s your own body. I tend to have a high tolerance for pain and panic, so nothing is really an “issue” until I wake up on the floor, or find myself being hauled off to the ER in an ambulance. It’s both a blessing and a curse. : ) Suffice it to say, it is good to be surrounded by concerned watchdogs. Sooooo… although the brain MRI looked quite clean and lovely, I am back on the short leash this month with another scan set at 3 week interval, rather than the 6 that I had worked up to. I’m sure that I will be cleared again for 6… and soon for 9 week stretches. Gads… 9 weeks… I’ll have to work on sending them some properly formatted photos of me for their computer desktop theme. Wouldn’t want them to miss me too much. HA HA HA!
Next time around… a new MRI report, more Keytruda, and we’ll see what the neuro-oncologist has to say about my “electrical wiring”. In the meantime, I’m going to brush the spiders off the outside of the house, tackle some holiday decorating, finish some flooring repairs… and prep to see “JoeDoctor” again ; )
November 14, 2015
It appears that I have been slacking on my updates. Social media in general has suffered. I guess that sometimes living life gets in the way of capturing and reviewing it! : ) Everything is going well on the cancer forefront. Keytruda infusions are still at the 3 week mark, with brain MRI’s on the 6’s.
We passed a milestone this week, hitting the one year since start of Keytruda on November 11! I am so fortunate to have the team behind me that I do. If not for all of their diligence and research, I would not have made it to FDA approval of this life extending immunotherapy agent. Patients with brain metastasis recurring at the rate in which mine were cropping up…. don’t make it into drug trials. These people mean the world to me.
I already have blood tests back for this week, and all is on track. It is also CT and MRI week……… Sneak preview… the CT looks good! ; ) As for the brain MRI… we shall soon see! December 11 will mark a year since the last time I faced gamma knife. I keep in plenty close contact with “Major Hooligan”, from gamma. There is no need to grow tumors to pay her a visit. Fingers crossed for the upcoming brain MRI! Chant it with me… “no tumors, no tumors, no tumors”! Ain’t nobody got time for cancer right now. I’ve got another year of life to celebrate, Christmas on the way, family and friends to visit with, plus a barrage of “normal person” medical check ups scheduled!
More news on the horizon soon……. mass mailings… moves… a novel in the making… you just never know what you’ll step in here and find!
MRI results in the coming days…. waaaaaait for it…….
August 30, 2015
Yes, yes, I am nearly a week late on my “Tuesday News Day”, but it has been a BUSY week! We got to see and visit with much of our USC family. It seemed that everywhere we turned, familiar faces were smiling our way. All good news to share this month.
Let’s start with medical oncology: My chest/ab CT came back with no sign of any spare meat! Blood labs are normal again. Everything is in range. Another round of cancer killin’ Keytruda is in the books! The only noted new “side effect”, is my response to bug bites. I brought this up with my doc, commenting that I must be suffering from more insect chews due to my increase in cycling. I still insist that they’re attracted to me because I’m just SO sweet. The doc spewed out some lengthy medical explanation for my increase in reaction sensitivity. However, it followed the phrase “Well… it’s not really that you’re sweet…”. Once those words dropped out of his face, his clarification of the matter sounded remarkably like Charlie Brown’s teacher (“wah wah wah wah wah”), sooooo I really didn’t catch much of the scientific detail. At that point, I was suddenly more preoccupied with how and when I could strike him with the full brunt of my revenge. NOT SWEET? ME?!? Pardon? Whaaaaaaat!? **insert shocked face here** I was at a loss for words. How often does THAT happen? ; ) Well done doc. Frank may have to pick up some pointers. Ha! I guess the kid gloves are indeed OFF. No more concern for Niki’s fragile and sensitive girlie nature. Ha ha ha! That’s ok… more ammo for taking him out on the ice. ; ) The appointment wrapped up with me signing away samples of blood. ANYTHING for my doc’s research. I will never turn down an opportunity for him to learn and share.
Aaaaaand onto radiation oncology: The brain MRI shows more improvement again! We are down to monitoring only two spots! Things are disappearing with each visit. This is a very good trend, particularly for Keck Hospital’s gamma treatment record holder. BOOYAH! We were quite happy to hear this news. So much so, that my brain guy earned a long overdue “first hug”! HA! It really wasn’t just the good news… it’s that I know he surely must have missed me during the SIX week spread between MRI’s. Who wants to go six weeks with no Niki in their life? ;-p I wanted to be sure that I repaired any withdrawal damages he may have suffered. Frank even jumped in on the action, with the two exchanging a properly formatted “bro hug”… including the exploding fist bump follow through. HA! We closed the day with a group photo shoot. Apparently, my brain genius would like to share the oddity of his conundrum patient with other oncologists across the country. “Potentially thousands of them.” This man has had to deliver some horrific news at a very low point of my life. I am beyond happy that he is able to see the success of his unending efforts to clear my skull. If he wants a picture, he gets a picture. Anything for my docs. : )
With everything going so well for the week, there was one night at home, followed by a second trip down to LA. This time, there were no medical check ups involved. This trip, was to share my story with the Norris Comprehensive Cancer Center Development Staff. These are the people, behind the people, who are behind the doctors’ research. The foundation. The finance folks. It’s always nice to have the opportunity to meet more of the
“hidden heroes”. Without them, it becomes a domino effect. No money… no research… no treatment… no Niki. It takes a strong team to keep folks in the fight! Needless to say, it was another day ending in hugs all around, and a few new friends to chat with during follow up visits. : )
September is set to be a month full of activity with fundraiser rides and runs, concerts, visits with friends from out of state, and yes… another trip to USC for some of the finest care available.
August 6, 2015
Tuesday’s visit with medical oncology went quite well, as is typical of any interaction with the doc. Blood labs this month are all normal again. Normal normal… not just “new normal”! Once again, I was cleared for Keytruda infusion and am one baby step closer to taking the doc out to play some hockey. He keeps claiming he’s ready to go. Gloves are off. Ha ha ha! Just wait until I am “no evidence of disease”. There are but 4 little brain tumors left of the 38 that we’ve battled… and they’re getting smaller each time we check. He keeps an extraordinarily busy schedule, but I know people who know his people who do his scheduling. ; )
CT within the next two weeks, to be sure the body is remaining clear. MRI in just over two weeks to see how the brain looks this time around. In the meantime… the bike riding has picked up in prep for a century ride in September… and there will soon be fresh ice to practice on in Goleta. Head on a swivel doc……. I’m comin’ for ya! ha ha ha! : )
July 28, 2015
Here I sit, two weeks past my last visit to see the genius collective that is my “Fight On” team. The news continues to roll in positive favor.
Blood labs all in range….. check!
Treatment side effects minimal and under control…… check!
Brain free of any new tumors……. check!
Previously treated lesions stable and/or shrinking……. check!
With everything moving in “the right direction”, we’re able to spread brain scan appointments out a bit (6 week stretch! Yeah!). Keytruda (cancer killin juice!) infusions still require a needle in my arm for 30 minutes once every three weeks, but my schedule now has gaps which can be filled with living “outside of cancer”. Although I will never (not in the current scientific landscape) be “cured”, I have a growing comfort in moving forward to the next level of this new normal. When a doctor who has been fighting for you, and with you, (through some incredibly bleak scenarios) asks “So… What’s your next adventure?”, it stops you in your tracks. Such a seemingly simple question lingers in your mind with the reality of the weight that it bears.
What is my next adventure? I hadn’t thought much about it. The last 27 months have been a blur of visits, scheduling appointments, scans, treatments, and attempts to squeeze in “old normal”. That basic question made me take pause and think. I have most definitely enjoyed life like never before, but not for any duration of more than a 2-3 week advance. When you’ve so regularly experienced a high likelihood of facing radiation or surgery after the next set of tests, you tend to shy away from planning too far into the future. Sure, there is always the possibility that something troublesome could crop up. But, the pattern we’re experiencing, is finally sinking in enough to bring about a little comfort.
So… what’s my next adventure? Europe. I want to see Spain, and maybe France. But not the “touristy” stuff. I want to experience what’s real there. I want to experience their normal.
June 28, 2015
The short and sweet of the latest trip to USC……. My blood labs continue to look perfect with everything sitting where it should. After the usual pokes and prods, the conversation moved to follow up of #2 function. Without going into fine detail, let’s just say the descriptor “green ash” (I’ll let you mull that one over in your own mind) was tossed around, but things are much improved overall. Since I’ve been feeling so well, and the brain has shown marked improvement, I’ve turned up the cycling once again. This has brought about some noted heart rate spikes, whiiiiiiich was the next topic of concern. We’re not in any emergency panic situation, but it was suggested that I add another specialist to the mounting list of doctors that I already see. At some point in the next month, I’ll have a cardiologist to add to the team. I almost pity the individual who ends up with the job. I am known to be a challenge, with the latest characterization of being a “conundrum”. HA! The task of nailing down the origin of these oddball spikes in heart rate will not be easy. My medical history is extensive and colorful. I’ll need just the right genius for the job….. preferably one with thick skin and a skewed sense of humor… though, I am willing to train and eventually “break in” the appropriate candidate. ; )
Two and a half weeks away from more blood labs, Keytruda, and a peek at the brain. In the meantime, there are bikes to ride and people to visit! Hug your loved ones. Hug a stranger. Be a nicer human today than you were the days before.
June 13, 2015
Has it been a month already? Things have been so busy outside of medical visits, that for the first time in a very long time, it seems as though we managed to slip into some sort of NORMAL normal! **whoa** We’ve had two weeks in a row of good news!
Let’s start with medical oncology visit:
Last week’s blood labs showed everything in range, there are no new odd lumps or bumps, and outside of some “common side effect” activity, we had no reason not to move along with the Keytruda infusion! Yeah! Still on track and keeping cancer under control. BOOYAH! My thyroid is even stepping back in line. The biggest “concern” we had for this visit was….. ummm… #2. Yes, these are the kinds of conversations that one must have when going through treatments. Fortunately for you folks, I do not have the little poo pile emoji on my laptop, or you would absolutely be seeing it right HERE. The chat regarding how we should respond to these developing side effects had to be a serious information exchange. Buuuuuuuut… as with any typical Kozak/Wong conversation, it could not be dealt with on the most serious of medical terminology levels. The exchange began with real concern, before sinking into the topic of the “Stool Log” app that had been downloaded to my iPhone. We tech geeks stumble across these useful kinds of things. The app is quite simple, yet informative enough to help convey whether side effects are developing into more serious “issues”. It’s very basic and easy to use. Frank will tell you that it requires photographs and answering descriptive questions such as “Which president does it most closely resemble?”, but I assure you, it does not. Of course, he had to share his perspective with my doc. First appointment of the day. I’m not sure there is strong enough coffee to have handled that conversation tactfully. I did enjoy watching my doc bury his face in his hands as he shook his head in disbelief and laughter. It’s always fun to see the geniuses caught a bit off guard. I will however, admit to a little fear regarding what his retaliation might entail during upcoming visits or email. HA!
#2 aside… this week was a brain MRI and radiation oncology follow up:
This week, WE were the folks caught of guard when my appointment went off without a hitch 30 minutes ahead of schedule! We hadn’t even had the chance to pull together our check list! Thankfully, anything that came to mind was tackled by the docs even before the questions escaped our faces. We are now 6 months with no obvious new lesions! The surgical area is looking better with each subsequent MRI and the development of edema that we saw on last month’s imaging (right temporal) appeared stable to a bit dissipated. The overall assessment… “Everything is moving in the right direction.”! We did inquire as to whether my doc had ever seen a case such as mine, with sudden cessation of tumors cropping up. He processed the question before responding that he could recall only a single case of a gentleman who was “one and done” after a single gamma session. As for someone like me, popping up new lesions every 4-5 weeks, then coming to a screeching halt…. no. The new immunotherpy medications are too new for this kind of activity to appear more common. We’re all very hopeful that the pattern continues, and that many more patients are able to experience such turnaround. With everything appearing improved or “grossly stable” (I like that adjective in reference to brain material… gross… how fitting), I am able to push the heart rate limits a little more, but “Not solo”. YES! That is halfway to where I want to be. I enjoy cycling alone for the complete peace of mind. I’ll get there….. hopefully before the crazy caged squirrel feeling ruptures all over some poor unsuspecting soul. HA!
Just about two weeks away from the next round of Keytruda, and about 5 weeks away from the next brain MRI. Let’s see if I can knock this weight back down below 61 kg. I have a closet full of clothing that is begging to be worn again!
May 15, 2015
It has been a busy few weeks with plenty of scans and follow up visits. Neurosurgery is happy with the healing of the sutures and confident that the entirety of the “bloody mess of yuck” (very technical verbiage… try to keep up) was successfully removed from my right parietal lobe. That news makes me happy, as does the fact that I was able to wash that nasty petroleum jelly based “gunk” (blonde term) from my hair within two weeks. Dawn dish cleaning liquid not only removes oil from ocean bird feathers, it also works quite nicely to get crani gel out of human hair! I was sent away from the visit with instructions to follow up with radiation oncology for an MRI, and to “keep the heart rate near resting for a while”. Ummm… “near resting”? Sooooo… no cycling for a little longer. Apparently, when the skull has been cut open, and one’s brain has been fished around in, doctors like to keep things calm and relaxed. Have you ever witnessed a squirrel moving at turtle pace? Yeah. I’m having trouble seeing it too.
Next up in news was the body CT. “No acute disease”. Need I say more? In plain and simple terms… there are no visible mutant cell blobs that don’t belong in my lungs or guts. Blood labs are all in “normal” range, with the exception of the thyroid, which once again has taken a dip further hypo. This is not surprising with me and Keytruda. I’ll lean on that as the excuse for the additional 10 lbs that I can’t shake. Anybody lose some weight lately? Would you like a few pounds back? I’ll gladly hand this extra load over to any takers. It’s not so much the “new curves” that I mind… it’s that the buttons on my britches are straining. There is a serious chance of me taking someone’s eye out with an unfortunate wardrobe malfunction!
Aaaaand onto the brain news…… We went in with a “wish list”. #1… no new tumors. CHECK! #2… edema gone or seriously diminished in surgical area. CHECK! #3… no new bleeders. CHECK! #4… no need to gamma the surgical resection area. CHECK! #5… no additional edema on previously gamma treated lesions. “Ehhhhh.” Oh maaaaaaan… “Ehhhh”? Did you just say “Ehhhhh”? Well, 4 out of 5 will do. My brain is not perfect, but it is looking much improved overall. I’ve had edema and bleeders resolve on their own. We will be watching this “little pisser” closely. In the meantime, no heavy lifting, minimize any motions that dip my head below my heart… aaaaaaand… no straining or workouts that will increase the heart rate too much. Remember the squirrel moving at a turtle pace? Yeah. It might be time to head out to the ranch and make use of my firearms. Who doesn’t enjoy blowing holes in expired bean and soup cans?
A few weeks more of easy trainer spins and long walks, then it’s back down for another Keytruda infusion and another brain MRI. This little pisser of a leaking lesion better step in line and go away. The squirrel needs to ramp back up to full speed before someone suffers a “stressed rodent” incident! ha ha ha!
April 26, 2015
Craniotomy (brain surgery) #2 has officially been added to the list of “What USC has done for me” **cue Bee Gees “Stayin’ Alive”**. I know that sounds absolutely horrifying (the craniotomy… aaaaand maybe the Bee Gees), but allow me to skew it positive for you. : ) I can’t say with medical certainty that my assessment is accurate, but I can say, that IF my perspective is not on target… things are awfully coincidental in their timing.
Let’s begin with a brief history…….. Craniotomy #1 was done April 23, 2013, to remove a tumor of “unknown type” from the left frontal lobe, which had caused enough edema (swelling) to drop me to the floor in full on seizure. Thus began the melanoma journey that I have been on for two years. Gamma knife radiation treatments destroyed and controlled every other little pest that cropped up in my cranium since April 2013, of which, there have been 38 total. In early November 2014, I started infusions of Merck’s newly FDA approved drug, Keytruda (PD1). In mid December, I had my 9th gamma knife radiation treatment. By January, brain MRI’s began showing no new tumors. Every 3-4 weeks, as I continued to receive my Keytruda infusions, I was also getting brain MRI’s to monitor for new tumor growth and keep track of previously gamma treated lesions (tumors take time to “disappear” after treatment). As the months ticked by with no new tumors (unheard of for me!), we kept a close eye on one pain in the a** in the right parietal lobe, which had been gamma zapped in Apr 2014. While most of the other lesions had withered away without issue, THIS little brat had begun “peeing its pants”. Each month, the edema would extend juuuuuust a little bit. For the most part, I was asymptomatic, given the amount of swelling that was developing. My balance was unaffected, my sarcasm was completely intact, and I was living life as normal as ever! The only notable side effect of the building brain liquid was some minor loss of awareness of where 2 or 3 of the fingers on my left hand were in relative space. In other words… typing was becoming a chore. I was overreaching keys. Social networking was getting tough! Ha! We all continued to monitor, hoping that this brat tissue would knock it off and resolve the problem on its own, without the need for Niki to get drastic. Could it not follow the example of the other 37 tumors and just go away? Gah!
Jump to Easter Sunday and the planned hike to watch the sunrise. Ahhhhh… what a day it could have been! : ) But alas, because I just can’t be easy… and probably because my medical oncologist was out of the country… this little chunk of excess brain meat decided to kick things up a notch. As I washed my face in prep for the hike, I took note that the only the left tip of my tongue had gone numb. “Weird”, I thought. I ran myself through the battery of “drunk tests” that have become a routine part of follow up appointments. Smile. All looks symmetrical. Good. Stick out the tongue. Wait… now it has gone from numb on the left side, to looking like an alien is trying to get out of it… ONLY on the left side. “Ummmm… time to get Frank’s attention, because where this is going, probably isn’t good”. I was quite correct. Within about 10 seconds, the left side of my face had gone into full cinch mode. Fully aware of what was going on, but unable to speak with my jaw clenched shut on the left side (oh good gracious, they finally did gamma target the “less mouthy” center that Frank had been asking for! ha ha ha!)… I slapped him on the shoulder, and pointed at my face. He walked me to the couch, brought several strapping young fireman and a van with flashy lights to the house… and so went the idea of our sunrise hike with friends.
The local ER doc was on the phone with “my” peeps from USC, and the minute I could get to my cellphone, I was on the email to them. I knew what this meant for me. We all did. Brain edema is controlled with steroids. I was down that path in 2013. The difference THIS time, is that I had Keytruda in me. Keytruda works via the immune system and was doing a dandy job keeping new tumors away. Buuuuuut… immune response means swelling. Steroids work because they stop swelling by cutting back the immune response. Sooooooo… while necessary to stop the brain edema and avoid any further “episodes”… these steroids were going to kick Keytruda in the shorts. This pain in the a** chunk of previously gamma zapped meat was swelling in response to the same drug that was keeping new tumors from growing. From a scientific and medical standpoint, that has not been proven. However, the timing of how and when MY brain has reacted to the start of these infusions, tells me that it is either the biggest coincidence in timing ever… or that Keytruda does indeed have the potential to cross the blood brain barrier. There you have it… THE POSITIVE SKEW!
Knowing this “pants peeing” piece of tissue was not going to resolve on its own as we’d hoped, I wanted to avoid the chemical cocktail balancing act. What dose of steroids would I need to keep the edema controlled, but not overpower Keytruda’s ability to ward off new tumors? I already have to keep my thyroid in balance. I was not going to begin playing this game with my brain and body. I’m too mean and too aggressive. I wanted the trouble maker removed. Yes, that meant brain surgery. It was not a decision to take lightly, but I had been processing the “what ifs” for four months. “What if” hit me in the face on Easter Sunday.
After a “let’s see what happened” brain MRI on the Monday after Easter, a follow up appointment with my brain radiation doc, a consultation with my neurosurgeon, and an email to reassure my oncologist that I was indeed still his most healthy patient……. we booked surgery.
The surgery went quite well, with my personally selected crew. When you’ve set the record for visits to gamma, you get to know the people who you’d want to let near your skull contents! It’s one of the “perks”. **yikes** I spent two days in the hospital before I was climbing the walls and asking to leave.
With the problem now removed from my head, we’re in forward motion once again. I am back on Keytruda and am set for follow ups with my entire team in the next few weeks. In the meantime, I’m back at work, I can type with BOTH hands once again, and I’ve been walking my old injured tendons so much that it’s going to be time to see a doc about THAT problem! HA!
April 23, 2015
Quick and dirty update, because I’m busy as a mad woman……….. Got a new hole in the head. Everything went as smoothly as any of us could have wanted. I’m back at work, bouncing off the walls and walking more miles than my old tendons can handle… buuuuuuut… until I can get a helmet back onto my head, the bike will have to wait! More details (and some cool photos!) over the next few days… I promise. Right now I’m hungry as a horse, and dinner isn’t going to make itself! : )
April 11, 2015
Soooooo… those “other things we’ve been keeping eyes on” (see post referenced below) decided to slap me in the face with a little attention getter last weekend. Once again, proving that I cannot make this easy for anyone. To add fuel to the fire, I waited until my medical oncologist was half way around the world and out of contact! You’re welcome doc!
Without going into fine detail, Easter Sunday morning sunrise hike was disrupted…. as was that “solid 4 weeks to relax” without scanxiety. On the bright side, the “whoa” moment was a display of bad things arising from positive forward motion. My excess brain meat is not a fan of this new immunotherapy. THAT’S GOOD NEWS! Still no new little buggers on the horizon, but we will now deal with a “cell ball” (more blonde terminology for ya!) that has been the prime question in review on each follow up visit since roughly the beginning of my PD1 treatment. This meatball doesn’t like PD1 anymore than any of the teeny tiny “invisible” cells being held at bay and/or destroyed. I like to think of it as PD1 making the meatball “wet its pants”. I know… that’s a nasty mental image… but hey… remember… I have brain faults and I’m off my axis! ; )
Long story short… after months of discussion and review with the pack of geniuses taking fabulous care of me… we’ve made a decision… and by “we”, I mean ALL of us on a united front, because that’s the way to win an attack… as a TEAM. What’s the decision? The meatball loses and I’ll finally get the “face lift” on my right side, to match the left one done two years ago when we began this journey! ha!
Am I nervous? Eh. Sure.. I guess… a little bit. Am I excited? Definitely! I’ve never been known as a patient or fearful person. I’m wired to be curious, eager, perfectionist, and aggressive. It’s not for everyone… but it works for me… and thankfully… my team too! : )
One final note to leave you with a grin…. Can you believe there are doctors… DEPARTMENT HEADS who respond to email on Easter Sunday? Whaaaaat!?! Yes. There are. People do care.
March 25, 2015
Happy dance and plenty of harassment ensued for yesterday’s “Tuesday News Day”. The report says no new tumors in the brain! That is the short and pretty of it. There are, of course, other things we’ve been keeping eyes on. And by “we”, I mean my personal brain genius and his “minions” (ok ok… sooooo, he’s not my PERSONAL brain guy. I do have to share him. Aaaaaand… technically, these “minions” are doctors and brainiacs in their own right… Buuuuut… why let the absolute truth stand in the way of a good story? ; ) HA! But I digress….
My doc broke his “tell” once again this month, sending his “new minion” in with the good news. I’m beginning to wonder if we’ve become a sort of testing ground for breaking in new residents. Ha ha ha! “Here.. go talk to the smart a** pair in room 3. Let’s see just how prepared you are for today. I’ll be in to save you, should you need it, in just a few minutes.” HA! : ) We were polite. There was a short exchange of questions and answers about how I was doing, side effects, etc… the typical preliminary chatter. All of which was, of course, followed by “Can we see the images?” That’s when the fun begins, because Frank and I take the driver’s seat for asking questions. It’s our moment for learning time! The new resident doc began rolling through each image slice with us, answering step by step what was being tossed his way. Eventually, I sat back down and began picking more closely through the report, to ensure that I hadn’t forgotten to ask something I would surely remember two minutes after getting onto the I5 northbound heading for home. It was then that my brain guy walked in, greeting us with that beaming happy face. We couldn’t let him escape without having to answer any questions. What fun is there for him if he doesn’t get to show his minion how to handle the “unusual” patient with ease and grace? ;-p He turned to the brain scan images to respond to the question posed, and pointed out the “faults” in my brain, followed immediately with “Do you see how it’s a little off axis?”. Fabulous.. so I have a faulty brain and I’m a little off my axis? Ha ha ha! : ) Not exactly. Apparently, the word is “falx”. Google it. It’s a cool little science geek brain word that you can stick in your pocket and use to impress friends at a party sometime. ha! I had more fun accusing him of being mean though. Soooo… from here on out… I will be using the excuse that “It’s not my fault. It’s because I have BRAIN faults, and I’m off my axis.” Hey… if I can’t fall back on “brain fried betty” anymore… ; )
Q and A session was followed with the routine “drunk tests” (blonde version terminology), some chatter about the hockey doc upstairs (I will have him on skates, stick in hand again within the next 3-5 years), and a few questions from my brain doc that had ME on MY toes for the rest of the afternoon! (How did he possibly remember that? Wait, how did he even know about that? Did I tell him and I just don’t remember?). Yeah… there is some definite give and take in keeping one another sharp and aware. Who needs Lumosity games when you’ve got top notch doctors to toy/test with? ha ha ha! Puzzle solved, so I managed some much needed sleep last night. I’ll see the fellas for more “fun with the fight” next month! : )
Blood labs, body scans, brain images…. we’re picking over EVERYTHING next month! I have a solid 4 weeks to relax before the full rage of “scanxiety”begins. Time to get some riding and unwinding in! : )
March 18, 2015
Yes yes, it’s Wednesday… but Tuesday was very busy, and more “action” filled than news oriented.
Blood labs came back looking good, although the thyroid continued to take a dive. It’s time to bump the synthroid meds and work to regain some balance. I’ve been more tired than normal, but then… my “normal” isn’t ever the normal normal… sooooo… I always tend to chalk it up to other things. Ex: not getting enough sleep, eating too much of the “wrong kinds of food”, more activity at work, etc. Not that I’m going to allow myself the excuse of hypothyroid or some slight iron deficient anemia to slow me down much. Keeping my mind and body active keeps me fit to fight! Aaaaaand keeps me from punching anyone in the throat. ha ha ha! : )
Hypothyroid aside, things look dandy fine blood wise, and I earned my ticket to another round of Keytruda. There was a lot of “hurry up and wait”, due the time of day, but I managed to wrap up the infusion with enough time to grab a bite of dinner before heading over to be a learning tool for the So Cal Dermatological meeting. Frank was wrong, there was no “glass booth” involved, and no hors d’oeuvres to serve. HA! Seriously though, it was a great opportunity to speak with such a varied batch of dermatologists from around the southern Cali region. The scientific breakthroughs in melanoma research and treatment are fast tracking at a rate that is difficult for the derm docs to closely monitor. I was happy to be able to answer background questions about my case, so they may possibly find/learn what to look for and what kinds of follow up prevention measures they might consider taking on their patients.
Up next….. follow up brain MRI and results next week. Follow up blood tests in three weeks… follow up body CT in 6 weeks. Keytruda appears to be kicking cancer a** in me, but diligence must never be over looked. Melanoma can be a tricky bastard. My team is dedicated to staying a step ahead of it! I’m a bit over 3 weeks away from the 2 year mark, but the battle is not “won”. That’s ok though. We’ve learned a lot. My docs are always, learning, sharing and growing. There are too many others out there who are not winning the battle. I’m fortunate to be surrounded by a team who wants to advance research in order to help others even more than I feel driven to. Am I passionate and aggressive about it? Yes. My doc posed the question to me on Tuesday “Are you sure you’re not Canadian?”HA! …. Actually… yes… I am. French Canadian/Swedish. I practically came out the birth canal in full check hockey mode. Aggressive? Sh**… I’m just gettin’ started. ; ) And with that disgusting mental image, I shall leave off until next week, when there is more news to share!
February 25, 2015
Yesterday was once again “Tuesday News Day”!
I wish that I could find a word more meaningful than “gratitude” to encompass the vast set of emotions that I have for this team of people. I’ve never been one who rolls with “mushy sentiment”, nor have I ever been of a nature to believe in predetermined fate or “plans” to each person’s existence. However, I do feel that one can merely exist through life, or reach for purpose in it. These people, whether they are aware of it or not, are not only living their lives with purpose, but gifting it to others as well. I understand that this sounds like a girlie pile of fluffy softness, because there was good news to be shared once again this week (and I’ll get to that… patience you must have, my young padawan… ha ha ha!). But for those of you who have known the details of my story for the past two years, you know that some months, “good news” meant “only two new tumors!”. Even during times as those, there was hope. Always. Hope. Always more to the fighting. The kind of people who are able to instill hope and confidence, even during times of bad news… (and sometimes even really bad news)… those are people who are giving purpose. Those are people I feel grateful to have in my life. Ok… mushy stuff aside… find your reason. Find the people who move you, and you will find purpose and meaning in your own life.
Sooooo… Niki… we’ve hung onto your BS this long… let’s just have the NEWS already!!!
Here you go…. The day began with a “road rage” crazy person yelling at us from their car window. Snapping to judgment, because this is East LA after all, we both shot dirty looks in the direction of the driver, before fully comprehending what was even being said. “HEY! You’re going to be late for your 8 o’clock appointment!” came the voice, cracking the quiet of 7:45 am. Our evil glances toward the car revealed my oncology nurse, window down, heading for the nearby employee parking garage. Thankfully, I took the time to LOOK, prior to my typical response to such things, as it saved me the public embarrassment of the flying finger and four letter accompaniment! Once inside and settled into the clinic room, I did take the opportunity to remind her, that she is a petite woman with a prior neck injury. I think I could take her. And with my history of brain tumors… I might just be able to convince a jury of my peers… ha ha ha ha ha! KIDDING!!!
I got settled in… the usual weigh and get vitals. Everything looking good. Blood labs were reviewed… also looking good. I have had a minor case of hiccups with my thyroid. Some part of me always has to be “weird”. Seems that I can’t decide if I’m going to be hyper or hypo. Once again, just keeping the geniuses on their toes and sharp! You’re welcome doc! : ) With everything in good working order, I was cleared for another round of the cancer killin’ juice! It was off to the day hospital for a quick and painless 30 minute infusion.
The Keytruda is working. My body is holding strong, and my brain has quit producing new tumors at the rate of a cinema popcorn making machine! Monday’s brain MRI made for 3 in a row with NO NEW TUMORS! Previously treated tumors are shrinking/fading… going away. My team and I have battled nearly two years to begin to see a good news pattern form. Not gonna lie… I think we’re all still standing with fingers crossed scan to scan… but seeing research and hard work have its payoff is a pretty amazing thing to be a part of. We’re still watching a splotch of edema (swelling) surrounding a previously treated lesion on the right side. Thus far, I’ve no obvious neurological effects from it, so we’ve opted out of taking any drastic measures to “deal with it” yet. If and when it becomes necessary to get more aggressive, I’m certainly with the right set of people to help me make a decision. Right now, my radiation oncologist is happy with my improving grey matter, and that makes me happy. I did inform him that his most current resident would have to remain on permanent rotation in the department, as he has been my “good luck” charm. No new tumors since Doc J’s arrival. Coincidence? Hmmmmmm. LOL! : )
Celebratory chow at Goleta Beach on the way home and the day was complete.
UP NEXT………. More blood labs and infusion in three weeks, plus the opportunity to play “learning tool” at a SoCal Dermatology gathering. Frank keeps telling people that I’ll be serving hors d’oeuvres before climbing into a one way glass booth, where I’ll be on display for full skin inspection. HA! Keytruda cocktails anyone? ;-p
February 3, 2015
Tuesday News Day!!!
No donuts for oncology today. The lack of sugar didn’t seem to dampen their spirits much, although the inquiry was made… “What? No donuts?”. I think we may have spoiled them. HA! None-the-less, it was all smiles when my doc was able to deliver more good news. The blood work showed nothing of concern, so I was cleared for another PD1 infusion… aaaaaaand… the body CT from Thursday was clean! The doc rolled through the typical follow up pokes and prods to ascertain no new unwanted lumps or bumps, then asked me about any side effects I might be dealing with. I may have gotten a tad girlie and whiny about some joint pain I’d had after some longer ride weeks. He noted my concerns, then with his very Niki-esque sense of humor, he proceeded to call me OLD without actually dropping the word “old” from his lips. The verbiage was strung together in interesting fashion. I can’t say that I was left unimpressed. He almost made it sound complimentary! Maybe we should have brought him the donuts. ; ) ha ha ha!
My infusion went off without a hitch, an easy 30 minutes… Then it was down to Radiation Oncology for the brain MRI results. More good news! BIG news! For the first time since diagnosis in 2013, I received a back to back report of “no new tumors”! Oddly enough, my doc broke his tell today and sent his resident in solo with the good news! Whaaaaaat!?! I knew he’d toy with me sooner or later. He’s quiet, but sly. However, this was sooner than I’d expected. Well played doc… well played. We hung around for some question and answer time, because I can’t let them think I’m becoming easy to deal with! I mean, sure sure, it was great news… but the visit has to hold some challenge… right? Nobody works supremely hard to advance that far into a career, just so they can start sliding when a case smooths out. I’m only thinking of him. It was practically a favor. I should start billing for keeping them on their toes. ha!
We’ll be heading back down in a few more weeks for another infusion of the cancer killin’ juice and a follow up brain MRI. I’m still on the short leash, as there is a remaining spot of concern with some edema (swelling) around a previously treated tumor. Overall, the SRS crew of geniuses are pretty thrilled for me. They all know who I am, and are all too familiar with what the last two years have dropped upon me. #kindafamous ha ha ha! Of course I’m very happy for me, but I’m also equally happy to be able to live up to their hopes for patients.
January 24, 2015
The “kiddo” is 24 today. Birthdays and holidays always bring on happy thoughts, and worries of the future all balled into one mess. This makes today the official kick off to “blend of emotions” week. Let me just ask you all in advance, to please pardon my crazy. HA! Wednesday is blood testing, Thursday is a full body CT, Monday Feb 2nd is another brain MRI….. theeeeeen we’re into “Tuesday News Day” on Feb 3.
I’ve been feeling fantastic physically. I know that is not always a good indication of what is going on with the guts and brain meat, BUT… it does allow for a lot more outdoor activity on two wheels, which I have been taking FULL advantage of! Wine country is looking gorgeous this time of year. The hills are coated in green and the air is clear. You can check out some pictures on my Instagram feed. There’s just no way I can suffer concern for tumors when living in the moment of a ride. It’s mental freedom. : )
Keep your eyes here for TUESDAY NEWS DAY on the 3rd! In the meantime, please send some positive energy to my fellow MFers (melanoma fighters) who aren’t having quite the easy roll that I am able to enjoy this month.
January 14, 2015
This week was “MRI Monday”… it had been four weeks since my last round of brain radiation, so as is typical for me, it was time to check for any new “excess brain meat”. I’m always seeking ways to expand my mind, but growing new melanoma lesions isn’t the direction I want to go! HA! As any cancer patient will understand, scan times are always a blend of emotions. One always wants to prepare for the worst, while still hoping for the best. I’ve grown accustomed to chilling out in the MRI machine for 30-40 minutes once a month. It has become my time to relax and reset. Stressing about results isn’t going to stop tumor growth.
This week was also “Tuesday News Day” (brain MRI results) and another infusion of Keytruda. That means it was also “visit day” with follow up appointments to see my docs. I look forward to seeing the geniuses. It’s always a good time chatting with intelligent people.
We brought donuts in for the medical oncology clinic. My doc claimed there were only 11 in the box, as he wiped the chocolate from his face. I told him that he is notoriously bad at math. He chuckled and stuck by his story, claiming that he can indeed count to eleven. Frank, jumping to his defense, suggested that perhaps some lab rats had escaped enclosure and come down for a morning snack. These men… why do I put up with this? : ) It was an enjoyable visit with plenty of laughter, some interesting insight (quote of the day: “I swear, I’m not making this sh** up.”), and the added good news that my blood labs look fantastic. I was cleared for another round of PD-1!
After the infusion, we headed downstairs for a follow up with radiation oncology……. time to find out what is going on in the brain! In his usual format for good news, my doc rolled in the door at the same time as his resident. I’ve explained to him that this is his “good news tell”… yet he still does not deviate from the pattern, and has never tried to confuse me. I should ask if he plays poker. I could use some spare income. HA! When the MRI shows new tumors, the resident doc will come in and go over the images with us, explaining what they’ve found. When the MRI shows “no new growth”, my brain guy waltzes in the door directly behind his resident, with a huge smile beaming across his face. I suppose it’s good that he doesn’t toy with me. It’s probably dangerous practice to intentionally mess with a patient known to have a history of brain metastasis. ; ) Of course, that doesn’t stop ME from poking at HIM. Mooooo ha ha ha ha! My team is used to it. I’m not exactly the quiet type.
Next on the books….. a full body CT to find out what is going on from the neck down… and another MRI of the brain in three weeks. I’m being kept on the short leash until we develop a more secure pattern of stability.