Kari’s Story

Welcome and thanks for checking in!

Cruising on 12 years of battling the beast called stage IV metastatic melanoma and, I am still just as determined to win as I have ever been! Thankfully, we (the foursome at Camp Kaywoodie), are blessed with an amazing support crew of family and friends and a skilled medical team that has held on for the long, bumpy ride.  We are so grateful!




I was originally diagnosed with Stage IV metastatic melanoma in April of 2003 just as my daughter Emilia turned one.  At diagnosis, disease had spread to my lungs, femur and multiple sub cue locations and my prognosis was grave.  I completed 2 1/2 years of biochemotherapy and surgery at California Pacific Medical Center in San Francisco and was pronounced NED in 2004.  In recognition of the fifth anniversary of my diagnosis, I spent the first five days of May 2008 walking, with my father, from Napa to San Francisco (77 miles) to personally thank my physician,  Dr. David Minor and celebrate the gift of life.  It was truly the walk of my life! 

In May 2009 (the same month as my original diagnosis in 2003), I discovered somewhat 'by accident' a lump on my side. It was sudden and unexpected by all, doctors included. A biopsy quickly determined the lump was melanoma, surgery was done with no other cancer found, and I launched into an inpatient IL-2 protocol. Unfortunately, three month progress scans (mid Sept. 09) showed a new mass, launching a five month bicoastal diagnostic and potential protocol obstacle course.  Our search ended as of March '10, when after three attempts, I was accepted in the phase II PLX4032 trial at the UCLA.  I was an early and complete responder to the drug however, the side effects were severe and unfortunately, the disease returned by the end of the year.  

With few options available, I had surgery again in Jan. '11 to remove a tumor, muscle and nodes in my shoulder and were confident we finally had the upper hand. Despite our determination, melanoma is a crazy beast and it quickly returned.  After much discussion and debate regarding quality of life, impact on family, and attempts to forecast the future (ha, ha!), we made the decision for me to start on the newly approved drug "Yervoy" (Ipi) in May of '11.  

The response to treatment was positive and we enjoyed a few months "in the clear" only to have the end of the year bring the news that the disease had progressed to my brain.  Brain zapping commenced (gamma knife) and was followed with another course of Yervoy.  Thankfully my brain is showing signs of improvement (that is shrinking tumors!) but the disease in my body has not been stabilized.  2012 began with a storm of research and investigation on "what next" and it was determined that the immediate course of action called for the surgical removal of a mass in my duodenum.  The surgery was a challenging one but I  recovered well.  Radiation of seven additional tumors followed in conjunction with the another round (third) of treatment with Yervoy (Ipi) that will continued through summer.  Unfortunately late summer scans showed that my disease was again progressing and it was back to the hunt for a weapon to battle back.  In Aug. '12 I began a new 2 year trial (anti-PD1; Merck 3475) in southern California.  As of January 2015, another relapse has hit and we are exploring the best way to fight back.

As always, we remain guided by hope, astounded at the community that continues to surround us, very grateful for the incredible scientific advances that  provide us with treatment options and determined to live as full and "normal" of a life as we can. 

Latest Journal Update

Poo on the Shoe

Okay, so it was my nice, clean, cozy slipper that ended up landing on a pile-o-poo and that was the insult to injury after a nearly all nighter with kid #1 up with stomach flu last week.  And yes, kid #2 went down this weekend just to make sure we weren't out of practice on the barf management front. 

Suffice to say, that somewhat sums up the way life has been rolling here in recent weeks.  I think that the pink-it-all-up (M&Ms included) breast cancer campaigns of recent years have added a bit of rosy glow (sorry if that is a bit punny) to the reality of what life with cancer can be like. While we would like to believe that dealing with a cancer diagnosis and the other discomfort that surrounds that is a sufficient challenge, if you ask most longtime cancer patients about it they would say "I wish!".  Quite the opposite, it frequently feels like you are undergoing some karmic retribution for extremely poor past life behavior.  If you want to weigh in on who I might have been and what I did, humor me, I lots of theories of my own!  Needless to say, many days find David and I starring at each other in disbelief and wondering...what next??  We have adopted a pretty warped level of humor as we often feel punked and wonder if Allen Funt is going to bust through the door as we discover a flat tire, plugged up toilet or some other needless life hurdle such as poo on shoe!

Here is the basic update...

  • We made it back from Houston in one piece although exhausted and I started an infusion therapy (immunotherapy) the following Monday.  My recovery from surgery was a bit slower than I had hoped reminding me that I am an older version of the kick ass cancer patient that started this game 12 years ago. Wiser too in theory, but that does not aid as it should in the physical recovery so I had to get benched and slow down a bit.  

  • I was slated to begin a second oral therapy the week after I returned home (targeted genetic, BRAF inhibitor) but a nasty insurance meets drug company meets UPS battle ensued, each jam packed with serious, over the top, nearly comedic (dark comedy) incompetence. The result landed us nearly three weeks late on getting that going and I just noticed last night as I reviewed a claim, that yet another arm wrestle looms to reverse a double charge--never ending fun.  

  • While terrified by the prospect of delaying treatment by a few weeks, I tried to take this as life giving me a chance to catch my breath before adding another round of side effects to the cancer circus.  I have taken a version of this drug before and it was a very difficult and painful experience.  That said, the prospect of starting again was one of much trepidation and anxiety that found me searching deep for a dose of courage and a cloth polish up my bad ass cancer kickin boots.  Now two weeks in to it, we are taking it day by day. I am experiencing the anticipated issues with joints/body pain and unfortunately am not able to spend much time seated which includes at the seat of my car.  I have to say that losing that freedom and mobility has been a test of my patience and ability to keep a positive pitch on all of it. I have set up a reclined office spot and am spending a bit more time in the virtual world these days. No sun exposure is also on the dance card so I am tapping my inner vampire and spending days inside + just landed myself a new round of sun hats and gear for occasional ventures out.  Trying to be patient, keep my plate full/mind busy and take it all day by day,

  • We are heading in to week #5 since we were in Houston and continue sending our good energy, thoughts and prayers to that petri dish in the M.D. Anderson lab saying "grow baby grow". Word is, we have six weeks to see if they grow.  Unbeknownst to me, I just learned this last week that no news is hopefully good news, and if my T-cells were not movin and groovin at all, I should have heard that by now.  With that, fingers are crossed that all is going well and there will be enough volume of T-cells to warrant an eventual transplant.

  • I am not scheduled for another round of scans/restaging until mid-late April. This date may bump up a bit if we get word from Houston and have to make treatment related decisions.  Hoping that is our prize for this crazy reality show we have been taking part in!
So for now, it is march on and take the moments as they come, much beyond that feels to uncertain.  The pace of life with two 8th graders wrapping up their multi-year career at the same school, same time, is nutty, exhausting and bittersweet.  They were both accepted to the high school they want to attend, and are excited to go, but the reality of leaving the nest they have been part of, especially with an bumpy road to ride right now, is big.  We are all looking forward to Spring Break next week, some good sleep ins, slower pace, catch up and hopefully a few family escape days to just be together.  Regardless of what is coming at us, it is these times together that always seem to bring laughs and levity all around---much needed!

Many thanks to all that have been helping to keep us afloat.  The unexpected food drops have solved many a last minute menu puzzle, spring flowers, rides home from school, and encouraging messages all remind us that we are indeed blessed.  We have needed to take few weeks to settle in to this new stage of the game and figure out what we really need to keep it going  --- please don't think the unreturned calls/responses to "let me know how I can help" are anything but us really not quite knowing what we need.  We are slowly figuring that out and will reach out in coming weeks, promise.

Happy Spring!

Kari & the Kaywoodie Gang
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Comments

8 Comments

Shelley Vanneman
By Shelley Vanneman
Here's to a relaxing and uneventful Spring Break. We do too so let us know if we can do anything. Love to all including the accepted high schoolers! Proud mama.
Megan Wygant
By Megan
Grow, baby, grow! Fingers crossed for continued silence from Houston!
Linda Hiller
By The Hillers in Nevada
Good grief! Love the "no news is good news" part! We continue to send the best energy and juju to you and your wonderful family and thank medical science for all their brave and creative ways to fight this ... go T-cells!! Love and big hugs,
Kevin Cunz
By Kevin Cunz
Hi Kari and Family,

We are sending all the love we can to you and your family! Enjoy your Spring Break.
"LOVE is everywhere look for it" SUSAN O'MALLEY.

Big hugs, blessings joy and lots of LOVE!

Kevin, Deborah and Hayden.
Anne Osbaldeston
By Anne Osbaldeston
Sending love and admiration at your sunny spirit and perspective in the midst of the poo.
Blessings and hugs.
Nancy Howland
By Nancy Howland
Dear Kari and family, As always I send those good SLO vibes your way as your continue your journey with grace (and dark humor). xoxo
Marian Moffett
By Marian Moffett
Somehow the flu should have the hall pass to avoid your house. Flu is not convenient right now, eh? No one tells you how the insurance part of the journey is a fulltime job and it's a NIGHTMARE! Shouldn't that piece be the easy part? It's not like you are trying to sneak in a new cute couch or Beyonce heels. Come on People, just say yes to the treatments and drugs. Grrr. two 8th graders....insane!!!!! Praying for pain free days and Houston to have miracles in their treatment. May your vampire walsk at night have magnificent views of the moon shining a bright path towards NED.
Blessings and hope,
Tyler, Marian and Family
Andrea Pazooki
By Andrea Pazooki