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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.
When was it? was I drugged? asleep? missing my #2 pencil? in some other haze? what was up when I circled choice F so emphatically on the test that must have been put before me once upon a time? I ask myself this often.
Circle the letter of the item you would truly enjoy doing:
A) a long trek/hike covering great distance B) an open water swim C) skydive D) write a book E) all of the above F) run the steeplechase
So, any of you that know me well know that any of those would have been great choices except F. I am not of any remote Kenyan heritage (they have won most of the Olympic steeplechases) and I am known to openly state my distain for running saying that "I only run when one of my children is in the path of imminent harm or....when the buffet is at risk of running out of food." and....as my kids grow up and I can charge them with more management of their well being knowing I have stocked them up on life safety tidbits (+ they are lethargic teens sadly climbing less trees and thankfully are not driving yet) and, as I am becoming more discriminating about what I am really motivated enough to hustle to eat, the chances of me never really having to run are greatly improving. But, life seems to keep forgetting that.
After that lead in you have likely figured out that I haven't been busy indulging in a new swim training program, a writing workshop or hiring a cute (tandem) skydiving buddy in recent weeks. It's been a bit more like what I envision steeplechase training to be with a fair share of hurdles, ups and downs.
Chemo #1 went smoothly and actually brought a welcome reprieve to swelling/pain thanks a big dose of magic steroids. Within a day or two my legs felt amazing in comparison to where I had been for months, and I was actually able to start driving locally, running errands, physical therapy and get a few projects underway. Huge relief and felt like I had cleared a major hurdle. Unfortunately, one thing that melanoma patients can't take regularly are...steroids so that tease of a relief did not hang on as long as I would have liked and the pain and swelling crept back---puddle landing on other side of graceful hurdle!. Thankfully though, the improvement was still enough that it did afford us an opportunity to escape for a couple of beach days/nights in a very sweet cottage just feet from the sand. No long beach walks for me but just being on the sand, a couple of gorgeous sunsets, away from home and of course having a good saltwater plunge were huge for both David's and my spirits. Escape is key.
The annual Camp Kaywoodie July boys birthday show down followed this last week and we set our plans in motion based on mom feeling pretty plucky. Unfortunately, it didn't quite play out that way as my left leg started swelling further and tried to set a new record. Off to the doc, and an ultra sound diagnosed blood clots in two spots landing me parked back in bed, leg up, more meds on board. Thankfully the kids were amazing and flexible and we pushed through. I spent Thursday eve with Calem and David out of town, listening to Emilia and a friend giggle through the house as they hung balloons, decorated, wrapped presents and conspired on other birthday pranks for the boys' late arrival home. They sweetly checked on me regularly, cleaned up, brought snacks and tea and kept me comfy as I drifted in and out. It was a very strange, sweet evening. Friday's birthday plans got steam rolled by my bed status but everyone rallied, regrouped and we celebrated Calem's 15th together, low key at home and it was great. It was not the few days we planned, everyone had to flex and give, but all done, I was so thankful to have the amazing family I have behind me as we made it work.
We had planned to spend a family Saturday at Relay for Life but ironically, the one that ended up absent was the cancer patient. But, the rest of the crew rallied to represent Camp Kaywoodie at their early report time, in good spirits, which was awesome. And, they capped the day with a late evening, home barbershop, hair show with mom (see the Rainbow Pony No Go Report below) after packing bags to head out for a week in Washington with David's family. An escape much needed after a long week of ups and downs.
As Annie mentioned, Sunday was our annual Porchfest in Napa, something we have done yearly by bike, picnic in hand. I figured myself out this year but when the opportunity presented itself in easy format, I decided that getting out of the house for a few hours might do me well and it did. I got to catch my sweet friend Juliane and the Juliane Band for a hour or so and then a set of some upbeat Latin tunes. Recliner taking up more than my share of the sidewalk, big hat, pillow tucked in, friend by side, cold drink...it was good for the soul. David got to wander and catch a bit more, so it was good for all and a great way to occupy my mind with something other than worries about heading in to chemo #2.
Chemo # 2 went off smoothly yesterday with the exception of learning that I was going in below the cut of for red blood counts so a transfusion is on the books tomorrow, Wed. Not what I had hoped but so it will be. And with the insane heat in Napa this week, spending another day in the air conditioned hospital might not be all bad! Monitoring of blot clots continues with orders to "behave" this week, lay low and hopefully it will all resolve. Another white blood cell injection today that promises to throw down some bone pain for the balance of the week but as long as the nausea stays away, no complaints. From here we hold tight and wait a few weeks before more scans will give us a better idea of where we head next. The crew at Angeles Clinic remains very much in touch and on board with thoughts of more trials and next steps. So for now, our job is to be patient and wait. I am happy to have the kids tucked away this week and to know they are having fun. They will be back in a whirlwind next week to finish up all the last summer "must do" activities before a final week of camp and the jump in to high school life.
Never dull, hurdles galore. And lovely surprises, moments, realizations, visits, meals, and more too. It is a crazy chase. Thank you so much to all that have continued to support us, those new faces that have jumped in, ones from the past that show back up---it is amazing what it takes to train for a steeplechase! I have added a few pictures of recent weeks and want to make a special call out to Riain, a Boy Scout in our troop who is hiking the West Highland Way (96 miles) in Scotland and placed a rock on a cairn, "a huge, cool rock" about 1600 feet up in the Scottish Highlands to send me some good ju ju. Thanks Riain---it means so much!
Much love to all as we hurdle on.
Rainbow Pony No Go Report: There have been no sightings or postings of crazy, colorful hair dos because all said and done...it must have sounded good at the onset but not felt right in the moment. It as a very tender process to watch unfold. There was lots of chatter and scheming about what could be done but in earnest, I think mom losing her hair was a pretty visceral process for my sweet family and perhaps harder since we have been here before and climbed such a steep mountain to get back up. Emi's initial enthusiasm for wild color quickly processed to the reality of how much her teenage self would be mortified to be seen with her "I don't give a rip, crazy hair colored mom" dancing through the grocery store even if it was great fun to imagine. So, with Em's approval I opted to go for a short, curly doo for a couple of weeks as my hair started falling out and probably should have done it long ago. It was fun and easy but alas, short lived as the Camp Kaywoodie vacuum got taxed beyond the regular dog, cat, bunny duties it usually has as my hair ended up here, there, and everywhere. A mid week chat about being ready to shave my head ended in a very teary conversation about how once that step was taken, everyone would know and clearly, there was no more hiding from the reality of it all. Hard stuff. So, I let it ride a few more days--more hats, a bandana, the noggin was not fit for showing around. By weekend's end, the time had come to "take it off" so the final offer was made---are you in or are you out? Whatever feels right. In good spirits, Emilia led the charge, scissors in hand for some serious experimental cutting/styling and lots of laughter. It was clear that there was a fine line to dance here between being silly and accepting what this all meant--there were a few tears and then lots of tears from the belly laughs too. School boy bangs, bowl cut, Friar Tuck, half off/half on, it was quite a process. It seems this is all just that, a process.