Kari Worth's Journal
Written May 31, 2013 4:08pm by Kari Worth
Tin or Aluminum vs. Luau or Spa Day?
This is the question that I have been pondering over the course of recent weeks as I go through these May days brimming with life at a mad pace. This time of year is always a bit challenging for me as I take a step back (mentally) from the conscious denial I so heartily walk hand in hand with most days, and I take an honest inventory of all that surrounds me. In it, there are many late night hours spent trying to wrap my head around what it means to be here, now, with a very, very clear and tender awareness of how precious and fragile that fact is. The process of converting knowing the literal to accepting the reality, is an annual challenge. And this year it has been a more singular, cerebral process than ever, one that feels even more monumental, as I mark 10 years of living with Stage IV melanoma. Crazy, crazy stuff that I would never have believed possible (and I am not so sure even my doctors did) in May of 2003 as we grappled with what it meant to be told I likely only had months to live with a just turned one, ringlet headed Miss Emilia and the (then) quiet, constantly hammer-toting 2 year old Calem. Wow, what a ride it has been! There are simply no words or descriptions that begin to encapsulate how grateful I am to be here, now, no matter how crazy the days can be (and have been this month—weee haw!).
So, that all said, the question that began this entry refers to how to mark this 3,650 day occasion. Tin/aluminum vs. luau/spa day are the conventional suggestions for how to celebrate a 10th anniversary vs. a 10th birthday (girls that is, because 10 year old boy party ideas included NASCAR and X-Men neither of which did any boat floating for me!) And the last 10 years being as they have, I am going with this being a birthday of sorts, so as time and energy permit, don’t be surprised if you are called to partake in a spa day or dig up some Aloha-wear and join in a luau because after a month of wrapping my head around all of this, I am ready to celebrate! And as far as presents go, I got the biggest one I could on Wednesday, another round of clear scans so nothing more could begin to top that. However, as I did at five years with 555walk, I am ready to walk again---not sure when or where but I am indeed ready for some training and another adventure. So, if you are the gift giving type, please give me the gift of joining me to take a walk (or two) in the not too distant future and stay tuned to see where the adventurous spirit takes me (us). I am happy to have May behind me and ready to rock WALK ON! Welcome June!!!
"Walking is a man's best medicine." - Hippocrates
Written May 1, 2013 11:53pm by Kari Worth
Holy moly! In an attempt to figure out how the heck to start this long overdue check in, I pulled out nearly four months of half written posts and ramblings, looked back at my last journal entry, and then the calendar. A firm believer in a strong topic sentence being a huge part of a successful writing experience (something I am always trying to impress upon my all knowing 6th grade kiddos), all I could come up with was just that…”Holy moly!”
It is hard to believe that 100+ days have passed since the year began, but indeed they have. As it all currently stands, life at Camp Kaywoodie is moving at what feels like well beyond 100 mph, most of the time. There are many, many balls in the air (perhaps too many), all at the same time, as the sprint for the end of the school year hits full swing. But, as always, when I am pretty certain at least one or two of those balls are going to come careening down and knock me upside the head, I pinch myself and remember how grateful I am to be here doing just this…juggling. Now all I need is a rainbow wig and perhaps I can join a paying circus!
So, the quick, cut-to-the-chase version (as we all get more and more conditioned to live in a “just text me the scoop” world), is…I am doing well. I am still running back and forth to LA for treatment every couple of weeks for a day or two. The day before I go is always a bit of a mental struggle to wrangle the energy to drive/fly/have treatment and face reality/drive/fly/drive. But, when it is done and I end up back in my own nest with a downright “normal” life swirling about me, it is fine. I am tolerating treatment well with minimal side effects, so I have nothing to complain about when I look back on all that has been! And, the rest of the crew seems to have settled in to our “new normal” as well as can be expected with the welcome stage of a new independence happening with the kids. It is really nice to know they can indeed, get by for a few hours without mom or dad on deck and just a phone call away (generally to solve an “I told you so” between them).
I apologize for not simply sending out that message earlier, as I have been reminded by the recent round of messages saying, “ So...are you out there?” and, “are you doing okay?”, that I am seriously delinquent in getting an update out. However, sometimes the process of sitting down, writing and posting, although something I enjoy and that helps me process this process, is also one that requires a bit of mental strength and preparation. It is a very real reminder of how fragile the situation really is “on the inside”, however “knee deep in life” the outside existence is. So, that is the short, sweet scoop.
Following are updates that I wrote over recent months but never managed to muster the energy to “get to print” with (and a slug of new photos--some oldies too that I just had digitalized--fun!). If you wish, read on; if not…more soon (yes, I still have more to say!). And meanwhile, be well, savor the remnants of spring as summer is fast upon us and although I am ready for the opening of the Camp Kaywoodie season (the pool is warming up), I am still enjoying those perfect clear, cool days and the remaining stroke of green on our soon to be golden hillsides (clearly I wrote that last sentence last week before the thermometer cranked up and brought us a week of summer temps—but, I am still holding out hope for a few more spring-like days and a chance to rescue my garden and…it looks like the forecast is on my side).
JANUARY - Gone Fishing Aloha
Every once and a while, when the going gets tough, the tough close up shop and go fishing (or get packing). So when a sudden opportunity presented itself to split town for a little Aloha escape, I quickly took a mental peruse over the prior 12 months at Camp Kaywoodie and took my own advise on the fact that sometimes in life we just have to go for it---forgiveness, not permission; it’s not how you feel going, it’s how you feel coming home that matters; jump now, think later; ready, set, GO!---they all scrolled through my head as I pushed “purchase now” on my screen late one eve.
After a crazy 2012 that challenged us all to the bitter end (11:48 pm, Dec. 31 to be exact, when we walked out of ER with Emilia after a freak skating accident), it only seem a fair trade off to collectively stop, take a deep breath, hold hands, dig our toes in the sand, and let the warm water wash a rough and bumpy year away. So, I promptly bought a new pair of flip flops (not going to say thongs lest you get the wrong idea), dug out everyone’s swim gear, did some quick and dirty last minute planning and we split town. What resulted was an amazing week of island breezes, whales, turtles, tropical fruit, warm water, waterfalls, a lei making class, rainforest hikes, a bagpiper that played on our beach at sunset each night in his swim shorts and an Aloha shirt (random but true!), sand, sand, and more sand, and lots of good laughs that are sure to fuel a healthier and more sane 2013. Sometimes you just have to stop the train and get off for a few moments---we were all thankful we did!
FEBRUARY – Life, Full Steam Ahead
‘Twas a month of just living life, full steam ahead, which is a good thing in and of itself. Many hours spent by all on the class play, The Robin Hood Files (ask David about stuffing two deer carcasses for props, fleece mind you but another case of “never say never” here at the Camp)---it was a hoot and a pleasure to help with. Lacrosse season got back in to action, with 5 days a week of practice (and soon to be 2 of games, 5+2=7!) between Calem and Emilia. Add homework, busy social lives, Boy Scouts, choir, LA travel for me, a pretty crazy work schedule for David, a few old friends stopping through town and that managed to fill 28 days to the brim.
MARCH – Post Nominal Letters, At Last
Can’t say I have ever given much thought to post nominal letters or had any strong desire to have my own set of them to add to my already less than decipherable signature (the kids always ask “where does is say Worth mom?”). Instead, I have always been a firm believer in the hands-on/head-first, learning by doing school of thought; no letters necessary. However, the first week of March I returned to LA for “restaging scans” and my chart now reads, “Kari E. Worth, CR”. Imagine that, sometimes you don’t know what you really want and this is a clear case of it! Screw the MBA, this was harder to earn for sure, more expensive without a doubt and far, far more worth it. And, in case you haven’t decoded that, CR= Complete Responder. So, according to the most recent scans, the trial meds have rattled my old body in to doing it’s job and I am currently sans lumps, bumps, masses or other clear signs of disease. Far out, I’ll take it! Next step, the most sought after notation for “students of the school of cancer”, is a “DR.” to slap after your name (not Doctor, but Durable Remission). But, as we learned the first time through, this takes time and is generally not granted until you have 5 years CR/NED. So, start the clock…we did it before, and I have to believe, we can do it again. It’s the plan here!
APRIL – Weekend Warriors
It seems like it was just last night we were scrambling to finish taxes and get birthday gifts wrapped for our Aries girl but alas, it was weeks ago and the month is gone. Where did it go? Away in many jam, packed weekends (and weeks). We managed to start the month by slipping out for our first camping trip of the season. Dusted out the pop up and enjoyed an incredible long weekend on Cache Creek visiting farms, buying fresh veggies, bottle feeding baby lambs, gasping at the beauty of hundreds of California Redbuds in full bloom, hunting Easter Eggs, and feeling a bit smug as we managed to pack up and pull out just before the April showers unloaded on us. And of course, with a house packed with pre-teen energy, there were a few attempted pranks on the day of fools as well. Luckily, mom and dad are well versed in plastic wrapping toilets seat, et al. and the students of humor still have a long way to go on the learning curve before they really get us (but, we have no doubt they are quick and crafty learners). We also turned our lovely young girl “double hockey sticks” (11) with family celebrations and were granted the gift of a mid-month mom and dad weekend away thanks to grandma and grandpa---it was a wonderful exhale that was much needed and seems oh so long ago already. Somewhere in the midst of all of that we saw our fair share of the greater Bay Area heading out to lacrosse games most weekend days (and, I would be lying if I didn’t say I am pretty excited that the end of the seasons are in sight)
Written Dec 18, 2012 10:39pm by Kari Worth
Living the Moments
Q.) Where, oh where, does the time go---90 + days of it?
A.) To living all the moments of…healing (David’s leg and Emilia’s foot are in good shape at last), dealing (with settling in to a new school year, juggling schedules and activities and mom being on trial and traveling again) and feeling (tired after one heck of a wild year, but that aside, pretty darn good all said and done).
As many of you know, fall is my season. I wait with great anticipation for the day that the yellow leaves are perfect, persimmons are deep orange (& within my reach), mornings are crisp with oh so blue skies, and the moment that the mantle is perfectly full of fall finds. I love the bounty, the color, the closure, and the sense that things might slow down a bit. But this year fall was late, or maybe we were just late for fall. Each time it cooled down and mornings started to smell “just right”, the next week would hold nearly 100 degree days. It was a bit of a sweaters on/sweaters off circus as Indian summer came more than it’s fair share and really getting in the fall groove took too long (which made me cranky). So, much like snow days that you easterners make up at the end of the school year, I opted to take a few fall make up days before welcoming winter spirit and décor. Only this weekend did all the gourds and Indian corn move out and we finally indulged in our annual “Yellow Leaf Street” silliness and photos. So, now…on with the show…tree, lights, and stockings hung, we are changing seasons.
As for life at Camp Kaywoodie, all done, end of day, it is well. Kids are busy and enjoying life. School continues to hold their interest and they are engaged. They both have activities they are vested in and an active social existence is huge on their list. Despite heading straight down the pre-teen x 2 avenue, they are still a hoot to be with (most of the time)! David is well and I mean that literally. His leg has finally healed after two months of crazy wound preparations, stitches, and the like. He has a war wound (scar) that could easily pass as the result of a shark attack but he is successfully returning to exercising and feels good. I am relieved to have him back in action and have a new perspective on how his shoes rub after trying my hand at quite a bit of caregiving this last year. After nearly 10 years of having the patient job description pretty well hammered out, having a new job was eye opening and leaves me appreciating even more, what he has faced with me.
On the Kari front, I too am well. As of last week, I have completed the first “cycle” of the trial I am on was given an “89” after my first set of scans, and that is reason for celebration (even though those that know me well know that a B+ is not what I am ever after!). I had never heard this rating scale used before but what it translates to is that based on the original “tumor burden” I had going in (three main masses and a “stable brain lesion”), and now with two no longer showing up, the remaining one significantly reduced on CT and not glowing on PET scans, and my brain still “stable” (really?), I have had an 89% reduction in tumor burden. As a result, I get to stick around and keep being treated in coming months. So slap a bow on it, we’ll take it, and that is a Christmas present better than any other could be. I return in a couple of weeks for another round of treatment and follow up scans to “confirm the response”. So on we go---I will continue to get treatment every few of weeks, scans every 12 weeks and hopefully continue to have a durable response—as long as I do, we keep going for the next two years. Side effects have ramped up a bit from the first couple of months but are still manageable in the grand scheme of things and we hope they stay that way.
I am grateful for the reprieve, thrilled to be responding and seriously relieved. At the same time, I am gun shy and cautious about what this all means with keen memories and fears of the unknown and possibility for these drugs to quit working at any point and put me back at square one. That possibility is something that no one can really confirm or deny being that one’s role as a trial participant is to figure this stuff out for future patients. It is a bit of a numb, guarded feeling that I have walked through before. Living in a strange limbo, in short snippets of time driven by scan results and test outcomes. It is the process of learning to think about the future again with confidence, to dream with genuine hope and to wonder. It is a reality that just takes time to regenerate and build. So for now, that is what I am doing---taking time. Time to live the moments, enjoy the days as they come, and continue to take stake of the awesome reality that we are celebrating our 9th holiday season since diagnosis. A gift in the purest sense!
Wishing all of you warm, bright holidays with a few moments of peace and wonder snuck in. Heartfelt thanks for your continued support, encouragement and love, it has been a huge part of riding the wave of this wicked, wild year with a degree of success. We are all looking forward to more shore time (umbrella drink in hand) and gentle tradewinds in the year ahead!!