Saturday, June 30, 2012

God's answers



I love this!  Such a good way to look at God's answers to our prayers.  I needed this today.

Friday, June 22, 2012

2 Year Milestone

Today is exactly two years since my Stage 4 diagnosis.  Kind of a big deal! Back then, statistics were only about a 5% chance of survival in two years (not that I pay attention to statistics anymore).

I remember the day vividly because it was probably one of, if not the worst day of my life.  To think that I almost went to that doctor appointment by myself too!  Luckily, Eric ended up being able to go with me so I wasn't alone after all.  I recall the doctor informing me that my scans were "not good" and showed nodules in the lungs.

The sheer fear that paralyzed my body was something that was so frightening and surreal, I thought I was dreaming.  I remember wondering if I would be around to see my kids grow up or even see my 35th birthday (which is 6 months from now)!!  Never in my life had I really questioned my mortality and now it seemed to be hanging by a thread.

The following 7 weeks proved to be the most stressful, anxiety-ridden, sleepless weeks of my life.  Choosing the best treatment plan was such a painful process because there weren't really any great options!  It was like choosing bad vs. bad!  Nothing we researched gave me more than a 15% chance of having success.  Researching treatments on-line and talking to multiple doctors definitley educated me more, but also created more stress.  I started taking sleeping and anxiety medications that summer because I couldn't cope with the anxiety very well on my own. 

Once I chose my doctor and treatment plan of Biochemo, I felt confident and at peace with that decision and was able to move forward finally.  I stopped reading statistics and researching on-line (which alleviated a lot of anxiety) and chose to start focusing on getting better and completing treatment successfully.

Looking back, I can't tell you how grateful and lucky I feel to have had success with the first treatment I tried.  I know that it isn't typical to do one treatment and have success.  Many other melanoma warriors go from treatment to treatment to find something that works (even if only short-term), hoping to hold out long enough.  I know without a doubt that my success is nothing short of a miracle and gift given from God.

I know that even though I have made it two years and have been remission for almost two years, I am not out of the woods.  Until we find a cure or long-term solution to melanoma, I know that I am just merely in remission.  I know that most likely the melanoma will find it's way back someday and all I pray for is that there will be better, more effective treatment options to put the cancer back into remission again.  I think of melanoma as a chronic condition now, much like people dealing with other chronic illnesses like MS or Parkinsons or diabetes do.  They take their medications and learn to live with their diseases. That's how I have to think of it now because it's not just "going away".

I have so much gratitude for the miralce of life that has been given to me again.  I know I wouldn't have gotten through the last couple of years without the support of my family and friends behind me.  I know that the Lord was watching out for me, holding my hand along the way and reassuring me that everything would be ok in the end.  What a blessing!

I celebrate this milestone and choose to live life in the "now" and not in the future.  I intend to always remember the things that I have learned, to hold onto the perspective I have gained, and to never take life or my blessings for granted again.

Life is truly a gift.

Monday, June 18, 2012

Sol Survivors T-shirt Fundraiser

In an effort to raise money for the paperwork needed to be completed for the 501c3 non-profit status, we are putting together a little t-shirt "pre-order" fundraiser. We got so much positive feedback on the t-shirts at the Run for Dunn, that we decided to put it out there for anyone interested in purchasing a
t-shirt.


The cost will be $15 (not including tax and shipping) and we are hoping to get at least 100 pre-orders, as to keep costs down on the printing end. Once we reach our number, we will submit an order with sizes and collect payment and addresses to be shipped to (if not in the Boise area).




If you are interested in purchasing one of these t-shirts, please email idahosolsurvivors@gmail.com with your name and t-shirt size.  Once we get at least 100 ordered, then we will place the order and get payment information.

Thank you for you support!!!

Friday, June 15, 2012

Coolibar

I am absolutely in love with this company, Coolibar.  They started in Australia, the skin cancer/melanoma capitol of the world and now bring their products to the U.S.  Not only do they offer phenomonal sun protective clothing items, but they also feature many stories of skin cancer survivors on their blog.



What I love best though is they offer the BEST of the best sunscreens out there.  Dermatologists recommened, Skin Cancer Foundation approved.  Because it is well known that zinc oxide is the #1 ingredient found in sunscreens (and most off the shelf at the drugstore do not have zinc in them), almost ALL of their suscreen products have zinc in them.  They also offer many natural-based and organic sunscreens, which I prefer. 

This summer I am on a mission to find the best and most effective sunscreens that fit this criteria:

1.  It must have zinc and/or titanium dioxide of at least 6%.

2.  Obviously, it must be UVA/UVB broad spectrum and SPF 30 or 50.

3.  It must be a natural based sunscreen with no harsh chemicals that penetrate and absorb into the skin, and be PABA free.

4.  It must be very water resistant.

5.  Lastly, and probably toughest to find would be a zinc based continuous SPRAY sunscreen.  With kids in and out of the pool and outdoors all day, reapplying sunscreen would be a lot easier and less of a hassle if I had a very effective spray sunscreen that has zinc in it.  So, far, I have only heard of one brand that has it.  EltaMD.


Many of Coolibar's suncreens meet the criteria (except for #5 which isn't the most important) and I'm excited to try out Badger, All Terrain, Blue Lizard, VaniCream which can all be found here.

If you have any recommendations for good suncreens based on the above criteria, feel free to leave me a comment with your suggestion! :)


Sunday, June 10, 2012

Kari Worth, 10-year Stage 4 Melanoma Survivor!




I am in my tenth year of battling the beast called stage IV metastatic melanoma, and I am still just as determined to win as I have ever been!

I was originally diagnosed with Stage IV metastatic melanoma in April 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 two and a half years of bio-chemotherapy and surgery at California Pacific Medical Center in San Francisco and had no evidence of disease in 2004. In recognition of the fifth anniversary of my diagnosis, I spent the first five days of May 2008 walking, with my father (pictured above with me), 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 (September 2009) showed a new mass, launching a five month bicoastal diagnostic and potential protocol obstacle course. Our search ended as of March 2010, 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 January 2011 to remove a tumor, muscle and nodes in my shoulder and was 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 2011.

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 have recovered well. Radiation of seven additional tumors followed in conjunction with another round (third) of treatment with Yervoy (Ipi) that will continue until mid summer. Our fingers are seriously crossed as well.

As always, we remain guided by hope, astounded at the community that continues to surround us, very grateful for the incredible scientific advances that continue to provide us with treatment options and determined to live as full and “normal” of a life as we can.

To read more of Kari's amazing journey as she fights and BEATS melanoma, visit her Caring Bridge page.

Wednesday, June 6, 2012

Twisted Silver Promo benefits Sol Survivors!

Twisted Silver, a jewelry company out of CA conducted an interview with me recently about my journey with cancer and our foundation.  You can read that interview here.

In addition, Twisted Silver is running a special promo for the month of June.  If you purchase the CHILL bracelet, 100% of the proceeds go to Sol Survivors Melanoma Foundation!  I am so honored and thrilled by this gesture!  With all the costs associated with starting a non-profit foundation, we are grateful for any amount of money we receive from donations to help us with these expenses.

If you would like to purchase the CHILL bracelet and help us out, please purchase here.  And THANK YOU!!!!


Sunday, June 3, 2012

Run for Dunn

The first annual Run for Dunn was a huge success!  As many of you know, Amy Dunn was one of our fellow 'Sol Survivors' who, sadly, passed away in March from complications due to melanoma.  Her family and friends decided to do a run in her honor on her 30th birthday to celebrate her, to raise money for her scholarship fund at Boise State University, to also raise awareness for melanoma.

That's where we came in!  We gathered all the educational materials that we have (including our very own brochure!) on melanoma and other skin cancers, detection strategies, and sun safety/prevention practices as well as tons of sunscreen samples.  We were also able to get a couple of local dermatologists to conduct skin cancer screenings (in which they did over 60!)

Our little foundation is growing and we had so much support at this event from our husbands, to fellow 'Sol Survivors', to newbies who have joined "the club" to help us with our mission!

The event was very well organized, thanks to some of Amy's friends and there were over 200 participants!  Not bad for the first event!  There was birthday cake for Amy after the run, and many people just stuck around after to hang out.

And don't worry, we made sure everyone had sunscreen on!  Nobody was walking out of that event with a sunburn!


Our booth!!!


Sunscreen samples, chapstick, and educational materials!






The 3 co-founders of Sol Survivors Melanoma Foundation--Janice Dilworth, Me, and Lisa Bulow!


Get ready, get set....


GO!!!!!



 

The crew, including Amy's parents, brother, and best friends!