Tuesday, April 15, 2014

Experiencing A Bump In The Road On The Way To May: Melanoma Awareness Month

It's a slow day. What can I say? It's raining, my sinuses are backed up and giving me a horrocious headache, my thinking is fuzzy and foggy...but, I can recognize a bump in the road when I see it. And one can either be stopped by the bump or work around the bump.

I choose the latter. I may be technologically challenged, but I'm still clever enough to work around a bump as best as I can.

The bump? FACEBOOK! Oh, I love Facebook. It's a great tool. And it's just that...a tool. It is what we each choose to make of it. Some leave the tool in the shed and never go near it. Me, I embrace Facebook on behalf of my church and on behalf of the melanoma community. Sometimes, however, Facebook fails to embrace me back. It makes changes without my prior approval. And it has made some serious, and in my humble opinion, awful changes to the way an "event" page is administrated since last year about this time. Last year my month-long "May: Melanoma Awareness" event ran without a hitch. Without a hitch, I tell you!

This year, already, as of today...it has me stymied and irritated. Last year's event had over 7200 attendees by the end of May. Placards had been designed and a wonderful volunteer whose husband had died from melanoma stepped up and offered to put people's pictures in the placard of their choice, and she was swamped. This year she knew she needed more time, so I set the event up earlier this month (April 2014). I should have realized I would have problems when there was no way to add an "end date" and set it to automatically run through the end of May. But, it let me change the event date on a daily basis...I could do that with no problem.

Houston started having problems last night as I write. I tried to change the event date to today, April 15th, and it wouldn't let me. So, OK, I logged off and rested my computer for the night thinking, naively, that when I logged on today, kink would be gone and I could change the date.

Well. No. The kink was still there. I couldn't change the date, and because, in Facebook's mind the event was over, it was gone from calendars. That meant people would have to go back into their "past events" and resurrect it. The only saving grace in this is that FB doesn't completely delete old events. It's still "there" technically, but now, even I the event admin, have to hunt for it. Not good.

It did give me the option of "repeating" the event. And when I tried that, it was a blank event. Back to zero participants and all the posts from the previous event were gone. Scrap THAT idea.

I chose not to create a new event because I'd run into the same "date" issues...and all previous posts would be gone.

The event page was giving a few other problems as well. It got to where it would not let me...ME, the event admin, leave photos in comments under posts. Not good. A few people complained to me that pictures that had been posted were somehow "gone." And they would be gone, And sometimes they would show back up again. We already had over 700 people attending this event and already issues were piling up and there wasn't a thing I could do about ANY of it!!!! Not good.

So, I created a new Facebook page (NOT another "event" but an open community page) for May: Melanoma Awareness Month. Yes, it will mean starting all over. But we still have the placards and wonderful volunteers working on them. And, prayerfully and hopefully, we'll get over this bump in the road and keep driving on with no more challenges to surmount. I hope so because I'm sure not in the mood for surmounting more challenges from Facebook!

For the record, the event page can still be found here: https://www.facebook.com/events/523246704452369/

The new page is here: https://www.facebook.com/MelanomaAwarenessMonth

I am truly sorry for all inconvenience, redundancy, and any headaches this may cause.

But, I'll tell ya, if you live with melanoma or any other cancer or health issue or life-issue...this is peanuts. Small potatoes.

A bump in the road.

May is coming and we're ready.

We're going to educate, honor, and remember.

Join us if you haven't already.


Saturday, April 5, 2014

Melalessons From Melahomies

April 4, 2014, I posted this on Melanoma Prayer Center on Facebook:

What have YOU learned on your melanoma journey that you want to share? Bless others, and yourself, by sharing please. Thanks!”

As of right this moment, these are the responses I've gotten and they are worth sharing with the greater Internet world. I have not used their names but you are free to go to MPC and scroll until you find the post. There may even be more comments to read by then! Here ya go:

“It wasn't my journey, it my mother's; but what I learned is that although our prayers aren't always answered in the way we want them to be, they are answered. He hears us when we are at our lowest and gives us comfort, strength, and many graces.”

“My faith in God has become stronger than it has ever been he is my Rock and my salvation he has never ending Love for us I praise him several times a day! He is a healer, I am Blessed, I enjoy every breath I take, I Do not take things for granted, I  love to spend time with my family I cherish them every single second. Life is to short to be unhappy or mad be quick to forgive. I am still fighting this Disease, I am warrior! All my Love.”

“My daughter is stage IV, and I have learned that sometimes your children are much stronger, and braver than we ever imagined.”

“I've learned that the material treasures you have on this earth mean nothing. Loving one another means everything and losing my daughter to this horrible disease is devastating.”

“I have learned that I am stronger than I ever imagined and that life will never be the same again. I am grateful for the knowledge I now have and can hopefully through sharing can help raise awareness in hopes that someone else may learn, and not have to go through what we all do with the beast. I have learned that there are some wonderful people in the melanoma community and have made some great friends. I found out the hard way that not everyone understands what your going through but someone that has went through it themselves, and am so grateful for all the people that have helped me along my journey!”

“Life is amazing. Feel blessed to be here Everyday.”

“have learned you find out how strong and resilient you are. I went through my first diagnosis alone, 4 months later the Lord blessed me with my soon to be husband. It has been a journey of rediscovery, pain, laughter, tears, and hope. I have finally been able to loosen the death grip this disease has on me. I won't be afraid to live my life, be active, and play outside with my children! It really opened my eyes as to how selfish I was with my body, thinking I was indestructible, and that cancer could never happen to me. God Bless!! Keep on fighting you bad ass warriors!!”

“I have learned to enjoy and appreciate the small things and never ever take any day for granted!!”

“Watching my husband fight his battle with the "Black Beast", we should appreciate every minute of everyday for we are not promised tomorrow. My husband and I were drawn closer to God and Faith has what gets me through each day without him. God bless.”

“Amen to all these comments!!!”

“every breath is a gift . . .”

“KNOW that surviving stage IV melanoma is never a ONE drug quick solution, everyone who survives long term has major setbacks, they use plan a, b, c, d and often e and F! For now, its a combined effort of drugs, and cherry picking. And you need to know that it takes a long time to get it to go away......so don't approach your new diagnosis expecting that you will do one miracle drug and it will solve your problem. Get educated, talk to as many LIVING survivors as you can, and know what your fall back plan is in advance and don't be crushed when you have to use it. And pray, not just for the prize at the end of the journey but pray for the million little things that have to fall into place to become NED..(stage IV 1996)”

“I have learned to appreciate every day. And I've met the most amazing people. So brave and giving. I wouldn't wish this upon anyone, but it has opened my eyes to see life in a way I never could have before.”

“I learned that eternity in heaven is the ultimate goal. Everlasting life is found with Jesus and by his side no one will ever hurt again”

“I've learned to trust in God & His provision, to prioritise - putting my wife first in everything, also learned not to postpone things I really want to do. Also to value the people in my life, and to hopefully make a difference in their lives”

“I still cannot breathe from the loss of my beautiful 20 year old son. I'm still numb. But from Connor, I learned that every day is a gift and human connectedness is precious. Even though I can't feel joy yet, I learned that being joyful has a greater impact on lives that anything else. I learned that it's important to live every day out loud.”

“Glad to have shared a trip,of a lifetime with my beautiful girls and my wonderful husband who always looks at the glass half full not empty
6 years ago was my first warning shot stage 4 aggressive and one another one this year nearly to the day I feel like I am dogging bullets and fortunately for my beautiful girls I am still going ok”

“Watching my Dad fight his battle with melanoma has changed me forever. I don't take anything for granted and live each moment. It has made me realize that u never know tomorrow so enjoy today!”

“That it's not the end of the world, but a beginning of a new journey that can be filled with joy, blessings, and God's overwhelming peace. I hate having cancer, but I love how close I've drawn to the Lord through it!
This page is a blessing! Thank you for doing such a great job of uplifting those with it and raising awareness for those who don't”

“I am stage 3b an have learned many things. So there is no 1 answer.. No tanning booths. 2nd opinions. Get into a trial. Body scans. Never give up. Take every 2nd chance u get! Life is too short.... Live it to the fullest!!”

“I have learned that when my doctors said "I'm a challenging case" ( I have no know starting point and a non mutated gene and 15 tumors throughout my lungs and bones) that fighting for my life is the only choice I have.”

“Educate yourself and above all be your own advocate. Doctors work for you. Your allowed and should get second opinions!! Never give up hope. Last but not least your mind is very strong. Use is to your benefit don't let it get you down”

“Skin cancer is not just skin cancer”

“I to have walked this road with my husband down the road with the beast and he lost his battle on Dec. 21, 2013. I have learned more about this cancer you know the one "it's just skin cancer". I heard that so many times from people I wanted to stand on the roof of Duke and scream it's not just skin cancer it's taking the best man I have ever known from me and there is nothing I can do. So i did the only thing I could and that was pray and care for my husband. I to was a tanner never used any sun screen it make me want to stop all these young girls and let them know just what can happen but they wouldn't listen. I to have learned that no one is promised tomorrow so live life to the fullest and tell the people around how you feel about because you may not get a chance later. I am a 52 year old widow who now has to go through the rest of my life without my life's partner thinks about that next time you crawl into that tanning bed or lay in the sun with no protection. My life will never be the same a neither will our 13 year old daughters.”

“I've learned that every second with my husband was a cherished blessing. I've learned that this "just skin cancer" robbed me and this world of a wonderful man. (March 23) I've learned never take an instant for granted, that any second something can change your whole world. And I still HATE melanoma and will forever preach the safe skin message.”

“Fighting melanoma has shown me how strong I am!! I fought for my family and I know I want to share a message of HOPE!! 3 years NED, after 3 years.... thank you heavenly father and my angels.”

“I've learned I'm stronger than I ever imagined. I've learned there can be BLESSINGS along this journey. I've seen so many Blessings along my 14 year journey. We just have to remember to breathe and open our eyes!”

“I've learned you have to fight for them to proactively biopsy spots cause one of my tiny spots was growing and it was recently new. It was positive.”

“It's my mom's journey first, but our family shares it with her. I've learned that she is tough, more so that I already knew. And I thank God for giving her that strength, and for the knowledge He provides to all her doctors and researchers of melanoma therapies.”

Me again...melanoma is hideous, no doubt about it. It is from the pits of Hell. But we are cradled in the hands of God and God teaches us, not only in the rainbow times of life, but also in the storms...the hurricanes, tsunamis, and tornadoes of life. Learn from us.