Saturday, March 31, 2012

In remembrance of Amy Dunn

I regret to announce that my friend and fellow melanoma warrior, Amy Dunn, passed away today. To all who knew Amy know that she left the world a better place when she passed. She was such a inspiration to all who knew her--always honest, genuine, caring, full of life, courageous, and optimistic. She had everything going for her as a former All-Star Boise State soccer player, a beloved teacher and coach, a loyal friend, and a wondeful daughter and sister. Simply put, Amy was a truly remarkable person.

Amy, thank you for touching my life and inspiring me to fight even HARDER. You will be missed greatly, and never forgotton. Your legacy will live on forever as you touched so many lives here.

My heart has been a mixture of emotions today. Of course, I am saddened by this great loss, especially for Amy's family. It just doesn't seem fair when someone so young (she was 29) is taken away so quickly. I can only imagine the heartbreak that her dear family must feel at this time. On the other hand, I am happy and relieved that Amy is in a better place now--free of pain, FREE OF CANCER, and most importantly, happy and at peace finally. I know that she was received by many angels and is now amoung us as one.

Melanoma sucks. It is a nasty, rotton, unpredictable disease and it needs to be stopped. It takes away too many precious lives and doesn't discriminate. I have seen many melanoma warriors fall now, and it is always heartbreaking, but Amy was my first real friend who I knew personally, and so this is tougher. I pray that someday, and hopefully sooner rather than later, we find a cure to this disease. And erradicate melanoma from the face of the earth. I hope that I am still around for that day. I plan to be.

Giving up is not an option!

Tuesday, March 27, 2012

Keep Calm and Carry On

Today I needed to hear these words. My friend and fellow Sol Survivor, Amy Dunn, is not doing well. She is home from Arizona now because there is nothing more that they can do. I pray that she will be able to have peace, comfort, and not be in pain with whatever time she has left. I pray that her family will also be comforted and reassured that God loves her, along with many, many others. I know that God has great plans for her, she is a special person and will continue to do extraordinary things!

It's hard for me to not take news like this personal because of our link to melanoma. It also doesn't help when I hear other's struggles with melanoma because I can't help but think sometimes, "When is it my time?" I know that is morbid and I shouldn't have those thoughts, but it seems like most everyone I know that has Stage 4 Melanoma either passes away or eventually has to fight it again, also to succomb to the disease. Fortunately I do know a few survivors that are still around several years into remission and that gives me hope. I know that most likely my fight with melanoma isn't over, but I'm going to continue holding onto the hope that advances are made each and every day and that there could very well be a "cure" in the near future (or just better treatment options).

Until then, all we can do is try to "Keep Calm and Carry On".

Friday, March 23, 2012

Damn you, Idaho Senate

Well, after the Idaho House passed the tanning bill legislation (big success!) just a couple of days ago (after some ammendments), it was turned over to the Senate Health & Welfare committee, only to get dumped. This news is beyond aggravating and discouraging. It seems so straight forward to me.

FACT: Melanoma is on the rise. In Idaho it is one of the top states for melanoma diagnosis and the #1 state for melanoma deaths.

FACT: Research has proven that indoor tanning devices are carcinogenic to humans and can (and more often) lead to a melanoma diagnosis later in life.

FACT: Idaho has an alarming rate of tanning bed use compared to the national average, especially teen tanning. In fact, our rates are 2 1/2 times greater.

I could whip out even more statistics and show you all the studies done by the FDA, World Health Organization, American Cancer Society and many more, but I won't. In Idaho we have no law that protects minors from using tanning beds, not even a parental consent (I know, ridiculous). So basically minors can go use tanning beds UNLIMITED and nobody can stop them (except for maybe their parents if they are educated enough). But that's the problem. Most people aren't educated on this issue. They think that because it's legal it must be safe. And don't get me started on what the tanning salons are telling their customers. Things like, "Our beds are safe. They have the 'good rays' that don't cause cancer", or "Tanning beds are healthy because you can get good Vitamin D", or "Tanning just once in awhile is safe." We all know that those claims are utterly ridiculous and ludacris. There is no such thing as a safe tan, especially in a tanning bed.

So, it brings me back to the bill. If parents are educated on this health hazard, how are their kids expected to be? Shouldn't we protect them since they are minors? Isn't it the same exact thing as minors being prohibited from buying cigarettes and alcohol? There are laws protecting minors from doing that, so how is this any different?

The problem with some of our government officials in this state (and many other states), is that they see this as a "parental right". That it infringes on the parent's rights. Ok, so if that's the case, then we should permit cigarettes and alcohol, right? And again, most parents aren't properly educated to know that tanning beds CAUSE CANCER.

Even though I am discouraged by this news, I still have hope that things will change in the future and that we will pass this bill someday. And after sending personal letters to the Senate members and getting several responses back, I know that some of them are listening and trying to make changes. Let's hope that the majority are on our side next time though!

Sunday, March 18, 2012

Big Sky, Bright Sun, and Melanoma

Here's the piece they did in the NY Times on Idaho and our high melanoma rates and the whole tanning legislation. It also features a little about our support group with a picture of me (not my finest ;)!

Wednesday, March 14, 2012

God is There

I needed to hear this today. It was a good reminder. Sometimes we feel all alone in our life, in our obstacles, in our ups and downs but we need to remember that God is always there. He is waiting with outstretched arms to embrace us, to comfort us, to help us, to fill us with his love!

Saturday, March 10, 2012

Change of course

I am still in CA. What was originally planned as a one day trip to SF for my 3 month scans and maintenance treatment, turned into a FIVE day trip.

The scan results were good. No cancerous activity, and the one remaining nodule in my right lung was even a little bit smaller from my last scans. Whew. Now...the change of plans. When my doctor spoke to us about possibly considering radiation therapy to get rid of that last nodule, I at first thought the idea was totally out of left field. In the past, we had spoken very little about radiation with much more discussion around surgery. However, surgery was ruled out because of the location of the tumor--which is encircled around a bunch of blood vessels and arteries in a tricky spot--and deemed too risky of a procedure for little benefit.

The reason radiation is now just being brought to the table is this though: Recently an article was published in the New England Journal of Medicine (and headline news on MSNBC) about a patient with metastatic melanoma who underwent radiation to a tumor on her spinal column (which was causing her pain). This patient was also undergoing treatment of Yervoy, the same immunotherapy drug that I am still on. What happened was the radiation to this patient's tumor on her spine ended up having a "systemic"-like effect. It activated the immune system to recognize the cancerous cells and kill them (in combination with the Ipi). Consequently, the tumors elsewhere in the patient's body began to shrink also. The results were astounding.

This news is promising for many melanoma patients and interestingly enough, my own doctor has been doing this with some of his own patients for the last 6 months or so and has had some success. (He said that the other doctor just beat him to the punch at publishing it. ;) My doctor feels that I would benefit from the radiation because not only would it get rid of that last little nodule in my lung (to ensure that it doesn't become "active" again), but it would hopefully activate the immune system (in conjuction with the Yervoy) to reach any other possible cancerous cells in my body and destroy them. I liked this idea. A LOT.

I have to hand it to my doctor. He is always thinking ahead. Even though he has always been pleased with my progress and success, you could tell that the last nodule remaining made him uneasy. And probably because he believed that the nodule would most likely become active again in the future. So, why not, "zap" it now while it's still not active!?

We made arrangements to see the Radiation Oncologist the next day to have a consultation and then the assimmulation on Monday (to do more 3D imaging and fit me for a "body cast"). The actual radiation will take place in a couple of weeks (over Spring Break) and will consist of 3 different treatments.

I feel good about this plan. I am so grateful to have a doctor who knows melanoma and has a vision for each of this patients. A vision that is customized for me. I also feel that it is not concidence that this change of plans is happening all right now. Ultimately, I know that God has a plan for me and is leading me on this course and that knowledge gives me a lot of peace, comfort, and hope for the future.

Thank you for all of your thoughts and prayers!!! It means the world to us!

Wednesday, March 7, 2012

The time has come once again (sigh)...

Well, the time has come for those dreaded 3 month scans. Boy, do I get anxious about a week or two before! These last few weeks have been super busy and exhausting and even though I'm trying my best to take care of myself, I wonder sometimes if I'm pushing too hard. A couple of weeks ago I was feeling down and out over a weekend, not totally sick, just really wiped out. About that same time, I noticed some MILD pressure in my chest--around the bottom of my sternum and top of my ribcage. Of course, not having had a lot of experience with heartburn, I wasn't sure if that's what it was OR IF IT WAS SOMETHING ELSE. Because my tumors had been in my lungs, I had to wonder, "Was it a tumor?" I knew that the likely answer to this question was no, but going through Stage 4 Melanoma, I have learned that you never say never and you never rule IT out. The good thing is that the pressure I was feeling did go away, but then it came back again, and then went away...So, who knows? I guess I will find out tomorrow! EEK!

For now, it is out of my control. All I can do is remain positive, hopeful, and continue to have faith in the plan that God has for me. Wish me luck!

And the quote of the day...

Thursday, March 1, 2012

Community Education class

Our first community education class, called Safe In the Sun, was held tonight and I am pleased to announce that it was a success! We put a lot of hard work into it--Janice Dilworth, Lisa Bulow, and myself (all melanoma survivors and co-founders of the Idaho SOL Survivors). We were worried a couple of weeks prior that we weren't going to get even 5 people registered for the class, but we ended up getting around 30!

The agenda we laid out went very smoothly. We first opened the class up with a brief introduction of ourselves and then played the Dear 16 Year Old Me video. Such a great video on melanoma awareness. Then we introduced Dr. Steven Mings, a local, well-known dermatologist in the Boise area. He spoke for about 20 min on education--the ABCDE's of melanoma and our moles and how to prevent skin cancer. He did an excellent job and the class asked him some really good questions.

Then the agenda was turned over to Anne Woodhouse, a local holistic nutritionist, to speak about the importance of eating whole foods and which foods and supplements we should incorporate into our diet that fight cancer (and are just plain good for you). She had an incredible presentation and was also well-received.

Blake Sampson, a medical student going into dermatology, and also heading up the tanning bill legislation with Rep. Rousche of Idaho, ran through some statistics on melanoma--first global, then national, then Idaho. He explained this legislation that we are working on passing--that will ban minors from using indoor tanning devices--and what WE can do to get the House and Senate to pass this bill (such as write letters to our Reps). We are so grateful that we met Blake a few weeks ago and have been able to work closely with him on this bill. He is also the AIM for Melanoma Chairperson of Idaho and hopefully in the future, will want to work with us in our foundation as well.

After all of the presentations and questions, I closed out the class with a short speech that I wrote late the night before. Originally, I was going to use a speech that I had used from a previous event last year for the American Cancer Society, modified a bit. Well, the day before, the speech that I had changed just wasn't sitting well with me and so I ended up writing an entirely different speech. I called it "The Black Intruder". It was hard for me to not get emotional sharing my story through my speech. I think everyone liked it though and I hope that everyone that participated left feeling not fearful of melanoma, but empowered with the knowledge and tools of how to prevent it, inspired to take charge of their health, and hopeful for the future in finding a cure for this horrible disease. That was the message that I sought to give, and I hope that I accomplished that.

The class or evening couldn't have gone any better. But what really sealed the deal is that we had a reporter and photographer from the NY Times at our class! No joke! I still don't know how they found out about our class, but they wanted to write a story on why Idaho is ranked so high for melanoma incidence and deaths in the country, and the whole controversy with the tanning legislation. It was so cool!

We are so excited about the momentum that we are gaining with our cause and mission to increase awareness and education in the community. Our next step is to get our foundation established as a non-profit, continue to teach community education classes as well as possibly speak in junior high and high school health classes, and then plan some fundraisers. It will be a gradual process though because all 3 of us are VERY busy women, wives, and mothers and so we are trying to take this one step at a time. Right now, the goal is to get the paper work done and get our website up and running. Exciting things in the future and we can't wait to make a difference and save lives!