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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. 

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Latest Journal Update

Blue Palms but No Horns, No Crazy Rash, No Whammies

So, here I sit---drip, drip, drip---infusion #2 in process with nothing exciting to report except some blue palms that had everyone gasping.  

It went like this...despite my Norwegian (not a drop of Italian) heritage, I am prone to occasional emphatic gesticulation when talking.  In my appointment last week, my hands went flying up as I spoke and heard a collective inhale and saw bulging eyes from my research team.   Their gasp was followed by the head nurse tentatively saying, "do you know when you began getting blue palms?"   I had no idea my palms where blue and flipped them over to see what was up.  Baffled, starring at very blue palms, I thought "what the heck" for a long, perplexed moment while they all stepped closer to evaluate.  Then I looked down at my legs, and realized that I had been rubbing all day (they hurt), and  was wearing new, unwashed jeans.  Ah ha!  A quick little "lick and rub clean" test proved my theory and a very relieved exhale from the research team followed.  Talk about getting a reaction---lots of room for antics here---stick on horns?  crazy colored contacts?  Clearly I am being watched closely!

Nothing much more exciting to report.  Busy, busy home front with end of year school trips, projects, performances and general mayhem.  Grandma Marilynn has thankfully been on deck for the last 5 days to help keep it all running.  I am moving slower than normal so the extra set of hands is a giant gift to us all.  I have been in LA the last two days for tests, observation and another infusion.  I saw a new doctor this morning that is a pain specialist with an oncology background.  He was amazing, compassionate, helpful and gave me hope that we can get this all dialed in soon. In all my years of "doing this" (being an late stage oncology patient), I have never really had to deal with extended chronic pain. After the last few months of doing so, I have a whole new perspective for what that means.  It is crazy, no fun, life altering stuff that impacts everyone around you. I am hopeful that with his care I might be a bit more comfortable and functional in the near future. Time will tell.

Almost done, bag #2 and I am free for a week.  Off to the airport and home again, home again.  Amen.

Many thanks to all who are supporting us on so many fronts. The meals, rides, texts, calls, good thoughts and everything else so a long way in keeping Camp Kaywoodie afloat.

Much love!
1 person hearted this



Sterling Grogan
By Sterling Grogan
Kari: I would like to help you with transport in LA, so shoot me an email or call and let's discuss.
Uncle Mikey
Anne Osbaldeston
By Anne
Thinking of you and sending love and big hugs.
Naomi Torgersen
By Naomi Torgersen
Thanks for the update Kari. Maybe you,re turning into the blue avatar people. I am glad you are seeing the specialist for Pain. Pain does stink for sure, as I well know. Glad no major side effects from the new med at this point. !
Love you !
cat owen
By cat owen
kari, blue palms could only happen to you so funny
Gregg Herken
Kari--your stories are just amazing; I think there's a book there. Ran across a greeting card recently that said something to the effect: "Chemo done. Let's eat something amazing to celebrate!" Hope to see Grandma Marilynn and Gerry at our house this weekend. All best, Gregg & Aven
Gail Freiler
Wow, Kari! You are doing more juggling than the average bear! Thinking of you and sending loving thoughts your way
love, gail