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!

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!

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...

Have courage

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!

GOOD, BETTER, BEST

Over the last couple of years, with everything going on with me, I kept getting the feeling that somehow I needed to SIMPLIFY my life. That meant doing less extra "things" and spending more time just being with my family, doing the most important things (honestly, it was a good lesson to learn). Simplifying meant cutting out some activities, having less "friend" or "me" time, and having more "family" time. I'd like to think I succeeded (at least, partly) in those things.

You see, ever since I read the church talk, "Good, Better, Best" by Elder Dallin H. Oaks, I have always had the resounding thought in my head that I need to re-prioritize the things in my life. Let's be honest though--this isn't anything new to me. Fortunately, (or unfortantely), I am one of those persons who likes to do everything, be everywhere, and say "yes" to everyone. Why? I am not really sure, that is just the way I roll. All I know is that I am a busy person, and I like to be doing lots of things. I am also a people pleaser and I enjoy helping others. And, I also don't like missing out on things (which was a hard lesson for me to learn going through cancer. I missed out on a LOT of things).

It's this constant battle in my head of on one side, trying to maintain balance in my life so that I am happy and satisfied with myself, my family, and my accomplishments. On the other side, this need to "do everything" racks me with guilt though because I know that I can't do everything that I want to do and be everything that I want to be. I know that I CAN'T BE PERFECT (nor am I expected to be or even want to be).

When I look at everything going on in my life, and trust me, I have LISTS of these things, the first thought that enters my head is, "Well, Christina, you have a lot of GOOD things going on, so what can I cut out?" This is the part that I still struggle with they are ALL good things! Is it bad that I want to do everything and be good at it? Going back to the talk, "Good, Better, Best". Not too long ago, when I felt like my life was getting too crazy, I decided it would help me de-clutter my brain if I made a list (here goes that list again). I put three columns on a sheet of paper and labled them, GOOD, BETTER, BEST.

I then proceeded to fill in each of the columns to get an idea of how my life is filled with a lot of great and worthy things, but to break it down into what is most important. I figure that when the things in the BEST and BETTER columns aren't getting done, than I need to take things OFF of the GOOD column. It sounds much easier said than done, but it is not for me. I have a really hard time with this actually. I feel like the BETTER column I do pretty well on because those are things that are fundamental and necessary in our life, but often I spend time doing the GOOD things when I should be doing more BEST things.

I'm sure I am just hard on myself. Actually, I know I am. And don't get me wrong, I know I am never going to be perfect and that is more than OK. I just want to do better at keeping my priorities in check. I want to feel like I can check off most of these BEST things off my list, not because I should do them, but because I WANT TO. I want to know, at the end of the day, that I'm doing the best that I can and that Heavenly Father is pleased with my efforts.

Do I think I am doing my very best? I'm not so sure. The past few months or so have been crazy and hectic. I have been working a little on the side, I have been heavily engaged in our support group, the Idaho SOL Survivors and in trying to get our foundation up and running. Those have been some big time suckers. But it's hard for me to cut these things out when I KNOW that I am supposed to be doing this. I KNOW that this path has been laid out for me and that it is the right thing to do.

But how do I do these things and still manage to be the best mom, wife, daughter/sister, friend and person that I can be? I cannot. What I do know and have found great comfort in is knowing that our Savior, Jesus Christ makes up the HUGE difference that we lack. I know that I have the beautiful gift of the Atonement to lean on--for my weaknesses and short-comings. I know that I will always struggle with balance my ENTIRE life. And if anyone feels they are good at this, pleae by all means, impart your great wisdowm and advice on how I can juggle all of these things and not feel guilty!! For now though, I will continue trying to do my best, knowing very well that I will fall down, and waiting for the Savior to pick me back up.

Idaho to Ban Indoor Tanning for Minors

Idaho is making news!!! Of course, we aren't the first state to make this kind of news, but finally Idaho law makers are working diligently on passing a law that would ban indoor tanning bed use for minors. Only ONE state, CA, has passed this law so far, but 18 others including Idaho are now working to get this legislation put into ACTION.

A couple of weeks ago, I was contacted by a gentleman named Blake Sampson. He is a fourth year medical student at University of Washington, wanting to specialize in dermatology. His primary goal? Educate the public on the dangers of UV radiation, particularly indoor UV tanning. His interest in dermatology was somewhat formed through his wife, who ironically enough, was an AVID INDOOR TANNER in her youth. In fact, she reports using tanning beds more than 500 times in her life! She has yet to be diagnosed with melanoma fortunately, but as we know, is at a very high risk of developing it in her lifetime.

Anyways, Blake contacted me a couple of weeks ago because he had received our support group flier from a local dermatologist's office (Yay!). He was specifically looking for melanoma survivors to come to the State legislature meeting to testify that either one, tanning bed use can cause melanoma and/or two, how devasting this disease can be. I informed Blake that although I was not a heavy tanning bed user (even a few times puts you at risk though) and that my melanoma was most likely caused by the sun, that I would be MORE than happy to share my story and testify in support of this bill. I also told him that I would see what other melanoma survivors from our Idaho Sol Survivors group would be up to share their stories as well. Lucky for us, 2--Lisa and Robin--agreed to be there too, along with some local dermatologists and other healthcare professionals.

The court date was set for Thursday Feb 16th. What we thought would only be a few of us testifying from the "survivor's point of view", turned into several testimonies from other fellow survivors that came out of the woodworks--all were compelling, emotional, and incredible to hear. I was so touched to hear how similar these other stories were to ours, but ultimately what I felt we related to was the same physical and emotional damage done by this disease, as well as other issues, fears, and worries. There certainly weren't too many dry eyes during those testimonies!

What was equally incredible and compelling were the testimonies from Blake himself (who started it out by sharing his wife's own story, but also tons of research and statistics, specifically relating to Idaho), along with MANY local dermatologists who testified that melanoma in Idaho is now "AN EPIDEMIC". They each talked about how common it is to diagnosis a young person with melanoma now, even a TEENAGER. Or how Idaho is at the top of the list in terms of melanoma diagnosis in the country and Boise itself is #1 for melanoma deaths per capita. Idaho also has some of the highest indoor tanning statistics nationally too--nearly 22% of 14 year olds (yes, 14!) have used indoor tanning beds. The national average for that age group is 8%!!! And nearly 34% of 16 years old in Idaho have used indoor tanning beds. Isn't that crazy?!

Many factors contribute to these statistics, but two things are for certain. One is that this law needs to get passed so that it is illegal for minors (under 18) to use indoor tanning beds. The other thing that is certain is that parents, educators, and the public need to do a MUCH better job educating each other, particularly our YOUTH on the dangers of tanning (indoor and outdoor).

Back to the meeting... Besides the MANY testimonies in favor of this bill which also included a few health educators (high school health teachers), medical board members, and even the American Cancer Society, there were of course, a FEW opposing testimonies. You have your lobbyists that speak to imposing on the freedoms and rights of our citizens. And then you have your lobbyists that work for the Indoor Tanning Association, who basicaly tried to skew the data by saying that melanoma really can't be proven by indoor tanning bed use (bull crap) and that it is more to do with genetics (another false statement). You can imagine the BLOOD BOILING IN THIS ROOM when the people opposing the bill spoke!

When it was finally my turn to speak, I gave a shortened version of my diagnosis and all that I had been through, but also took a strong view about how we need to be doing a better job educating the public and our youth about this disease and the dangers of tanning. It felt EMPOWERING. I probably could've talked for a lot longer, but my 3 minutes was up and I did my best to get my points across. I was so proud of Lisa and Robin too, the other 2 melanoma survivors with me, who also shared their insight and struggles with melanoma.

All in all, it was a good meeting, very intense, but very intriguing. The next step, after Thursday, was to wait through the weekend while the Health and Welfare committee deliberated (really, what was there to deliberate?!) and then meet back together Monday afternoon. Monday (today) they had made their decision and (drum roll please)....UNAMINOUSLY voted YES to pass this Bill and move it to the House as the next step in the legislative process. WAHOO!!!!

This is such GOOD NEWS. I know that it was a combination of all the testimonies, all the facts, all the statistics, and mostly, the people behind passing this bill that made the difference. It was a once-in-a-lifetime opportunity for me to have a part in that, even if it was small, because I know that it will serve a greater purpose and help SAVE LIVES in the end. It was a GOOD DAY.

Adjusting our sails

Prayers and support for Amy Dunn

My friend and fellow Stage 4 Melanoma warrior, Amy Dunn, is beginning a new set of treatments this week and needs your help. The last treatment combination of Yervoy and Zelboraf has failed and so she is moving onto the next plan of action. Amy needs lots of extra prayers and positive thoughts right now to help her get through this, and most importantly, she needs some SUCCESS so that she can continue fighting this battle and eventually WIN!!

Because her insurance has denied 2 of the 3 new drugs she will be on, she needs your support. Her family and friends have asked if we could donate $7 on the 7th of every month to help pay for her growing medical bills. Amy has had previous fundraising efforts, but these new treatments are very expenisve and so the money is running out quickly. To learn more and donate, click on her website: http://getitdunn.org/

Amy is one of our Idaho SOL Survivors and I am so grateful to know her and call her friend. She is an incredible, courageous young woman who rarely complains and always has a smile on her face. To read more of her story, go to Amy's Caring Bridge page. (You must log in to view.)

Be humble

Often times I think when things are going well in life, it is a challenge to stay humble. I know it is certainly that way for me. Although I do believe that it is much easier to stay humble after going through something like cancer.

When I feel myself getting "too comfortable" in life, all I need to remember is how far I have come. A year ago I was finishing some pretty grueling treatments and feeling crumby much of the time, to say the least. It's hard to always be positive and see the "silver linings" in life when you're feeling that way! But I tried to keep in mind that it was temporary and that eventually I would feel myself again. Well, that day did come and I am so thankful to be doing well right now!

The part that humbles me the most is to see my "melanoma comrades" slipping by the wayside--losing their battles to melanoma or perhaps struggling to stay here. It's that part that always puts a lump in my throat and brings tears to my eyes--because that could easily be ME. In fact, that could have been me a year ago if I hadn't responded to treatment. I COULD BE DEAD. Yes, that is a strong statement, but I realize that it could've easily been my destiny. Fortunately for me, I am still here. But the thing is that it STILL CAN be me because with melanoma you are never out of the woods. Where I try to stay humble is knowing that this beast can always find a way back into my body. Melanoma is sneaky like that--some even like to refer to it as the "great masquerader" because it is often unpredictable and erratic. And I personally know this from experience. All I can do is remember that TODAY IS A PRECIOUS GIFT AND THAT RIGHT NOW I AM DOING ALL THAT I CAN.

It's those 3 months scans that come creeping up that make me anxious and worrisome, and often bring me to my knees pleading for peace and comfort. I'm sure God is sometimes sick of hearing, "Please, Heavenly Father, let me continue on this path. Continue to heal me and bless me with another 3 months of clean scans". I sometimes even find myself making "deals" with Him to serve Him in any way he asks of me, so that I can still be here with my boys. ;)

What also humbles me is to think of all the great blessings and tender mercies that my loving Heavenly Father has provided me and my family these last few years. I am often struck with awe when I realize the big things, and more importantly, the little things that He has given me to ease my burdens. I don't know what I did to deserve those blessings and miracles, but I am certainly eternally grateful for them and try to acknowledge every one.

I guess I am glad for these humbling moments because if we didn't remember all that we've gone through and learned, how could we be grateful? How could we look back on our lives and see the Lord's hand in it? How could we progress? Being humble and grateful is the key to our existence, I have realized. If we can do that, I know that we will not only be happier for it, but be able to tackle all obstacles that come in our way.