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Kari’s Story

Welcome and thanks for checking in!

Cruising on 13 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

Hat-trick!

One improved week, followed by an even better week, and another decent week = a three pack on the leg front. So keep your fingers (and anything else you have to spare or is sincerely luck improving) crossed that it continues. Strong legs needed!

After a pretty wicked start to the year with major leg challenges followed quickly by colitis round #3, the seas have calmed a bit it seems.  I am driving in town again, not needing as much pain control and venturing out on some short walks.  While these may not seem like major "hip, hip, hooray" activities, when you have been totally grounded, they make a giant difference in how all the dots connect for a busy family (and in one's mental status).  I have been back on all my drugs for a week so all hopes, prayers and good juju are being thrown at my system being able to tolerate the combo long enough to know if there are benefits to be reaped.  Scans are not that far off and being on this cocktail until we can shoot some comparative images, would be most helpful.

Recent weeks have held some lovely visits from out of town company that has brought me much needed levity, an escape and some good laughs (we really did wear our hair like that once upon a time Em and yes, your dad's legs were that skinny! and no, I am not ready to tell you any of the really good stories yet!).  I feel so fortunate to have old friends that love me despite that perfect feathered doo I had, shoulder pads, my penny loafer phase, and so much more. And in recent weeks meals have also come our way in many different formats. As I put energy towards these grossly normal tasks I now find exciting like driving carpools, fatigue is a side effect that has a firm grasp on my existence and really just makes me mad.  No amount of caffeine, naps or cold wash clothes stave it off, it just is a bone deep, wrung out feeling that kicks your booty. So the easy feeding for one hard working dad and two teens that are in lacrosse practice three nights a week is an immense help. Many thanks for the support and love!

Enjoy the spring weather (at least on this coast!),  KW

P.S.  I wrote this earlier this week and unfortunately, the end of the week brought the beginnings of another round of colitis---ugh!  So, I'm off part of my cocktail for the weekend to see if we can get ahead of it, guzzling fluids and hoping we can restart early week at a lower dose avoiding another steroid dance.  Steroids are like dancing the last dance at a middle school dance with that person you really didn't want to dance with and suddenly realizing it is Stairway to Heaven...it just keeps going and going and going. Once you start taking them you can't just stop, you have to spend days ramping down so it is much more of a commitment than you would like it to be.

& RIDES NEEDED:  I have an appointment in SF pretty much every week for the next few and am looking for rides.  Ride sign ups are still posted at "Meal Train" (https://www.mealtrain.com/trains/q78qm8).  Unfortunately it doesn't notify you when rides needed are posted.  Thanks much!
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Comments

2 Comments

Mac Magid
By Mac
hi Kari I think of you often. I have not talked with your mom in a while so I am glad to hear of your small improvements. By the way two teenagers should exhaust any parent. Thank you for keeping up with your blog and as allways your sense of humor.
Jeanne Dorn
By Jeanne
Hi Kari!! So happy to hear of some improvement with your daily living activities!! It must make a huge difference for all of you! Here's hoping your recent bout of colitis is very short lived. I sure wish I lived close by so I could be of some real help!! But... For now I'll just keep the prayers up and send you tons and tons of love and hugs!! Love you all so much, Jeanne
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