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Kari’s Story

Welcome and thanks for checking in!

Cruising on 11 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 and I am still traveling there for treatment on a regular basis.

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

Picking up the Pieces

Wow, what a crazy last week it has been!

Just wanted to check in following our Sunday shake down here in Napa and let you know that we are all in process of moving forward. Our personal outcome here at Camp Kaywoodie is: many hours spent sweeping/vacuuming/cleaning up in an effort to get our home to a safe to a functional place, and lots of broken/damaged stuff (with items still showing up in strange places---a cucumber in the freezer last night and balsamic vinegar 7 ft up the wall!). Our home is sound so far and none of us or our furry friends were hurt. The adrenaline (and associated benefits/productivity) have split the scene and we are all moving a bit slower, feeling a little foggy, and developing cabin fever, with creaks, noises, thumps in the night holding us on edge as we try to get back in to the groove.  I think David summed it up as he starred out the window one morning and said, "it is so strange...it is all the same but so different."  Indeed it is, I think we are all changed by the experience, forever.

Looking back over the last week we remain incredibly grateful that we were all together, tucked safely in bed and were not injured.  We are thankful for our neighbors that made sure everyone was accounted for, gas off, batteries well stocked, and then sat outside together until daylight FINALLY came.  We are so sad for our town, business owners that are still trying to get back to action, badly damaged historic buildings and those that got hit some much harder.  But, we are also moved by how people are helping each other and determined to move forward.  Great life lessons.

So, now..on to life "after the quake". To those of you in Napa reading this, that we haven't checked in with, we hope you are well and getting it all back together. If you need a hand, we are here this weekend and happy to help however we can.  And to all of you yonder that have checked in on us this week, thank you so much for your concern and cheerleading.  The pieces are getting put back in order (just did my pastels this morning and was pretty pleased I wasn't missing any colors!) and this too will pass.

Much love - The Camp Kaywoodie Crew
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Comments

3 Comments

Linda Hiller
By Linda and Jeff in Jacks Valley, NV.
Thanks so much for the follow-up, Kari, we've been wondering how your house fared, you're not so far from downtown so we knew you had to have some movement from that quake! We are only 4 hours away if you want crew help, or maybe want to get outta town! Love and good juju ...
Linda Duncan
By Linda Duncan
We must live with the possibility of earthquakes living here in California. But having good friends and good neighbors help us get through them . Much like what life throws at us in our journey through life. So happy you are all safe and sound and a few broken or misplaced things really don't matter compared to that. Stay well and safe...lindamae
gilian handelman
By
So, so glad you four are well and safe--most important. You all continue to inspire me. Let me know if you heed a trip to Berserk (horse races?) to get away. Our home is your home...Much love, G