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.
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
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!!!