Up and rolling early, have a 2.5hr drive to Charleston and my appointment is at 8:30. Thank you to my girl for being right here with me through this all. I think I'm still in denial - today is the "reality" day. God is good and prayerfully this will be an uneventful treatment as far as the side effects go, and will be the first step to kicking Cancers BUTT.....
Huggs & Smiles to all.....
Monday, April 28, 2014
Wednesday, April 23, 2014
Yervoy AHOYYYY
Monday 4/28 will begin the Yervoy treatments. I am anxious to get this going and to see some positive results. Every day is a blessing and I'm ready for blessings in abundance.
BRING IT ON
Huggs & Smiles to all
BRING IT ON
Huggs & Smiles to all
Thursday, April 17, 2014
Eye Opener
In the midst of trying to get the Hugs and Smiles campaign rolling, I found out the most interesting thing, The color of the Melanoma Ribbon is Black....BLACK....what in the world....."the ribbon that says GIVE IT UP, YOU'RE DOOMED" kinda black.....really...wow. We will be adjusting that a little to add some amazing blue to it and make it a little more palletable.
HUGGS and SMILES to all.....
HUGGS and SMILES to all.....
Wednesday, April 16, 2014
Bristol Myers
I received the call from Bristol Myers today, looks like they are going to approve the funding for the treatments! I am so excited....I will have a definite in the next day or so when I here it from the Dr.
God is good and continues to show up and show out!!!!!
Hugs and SMILES......
God is good and continues to show up and show out!!!!!
Hugs and SMILES......
Tuesday, April 15, 2014
Keep on Keepn on!
It's been a few days since I posted so time to catch some of you up.
The testing to see if I had the "mutation gene" for the first possible treatment was returned negative. So that was a no go. The Dr. then shifted gears to an immunotherapy drug called YERVOY, with no insurance, we are waiting on Bristal Meyers to approve the treatment and provide the drug, that request has been submitted on an emergency need. Wow you don't realize how bad this disease really is until you notice that everything has "emergency" or "priority" or "expedite" attached to it. I've spoken to SSDI 3 times now by phone, no biggie right? until I tell you that THEY called me each time advising that this has been moved to the urgent review pile...again, reality hits. So back to the treatment, it's got a long list of side effects but I'll be monitored closely and none of it is worse that the side effects of not doing it. So the treatments will be 4 infusions (90 minutes) 3 weeks apart from each other. If we get the approval this week I hope to begin treatments next week, we will see. The treatments will take place at MUSC, the Dr will see me before and after each, with blood work done prior to each treatment.
I have relinquished all of my attachment to Janavi Consulting, LLC, but will offer any and all advise that I can to my partner Jan...who is doing an amazing job of moving things forward, which has to be so difficult in these circumstances....please send prayers her way, she is a strong person, but even the strongest can have doubts, worries, fears....even in the presence of God.
I'm moving forward with trying to get a sponsor for the Can Am to make my trip across the US, but that's all in the previous blog. If you find it in your heart to assist with that process, any and all emails that you can send to anyone that you think may be able to help would be MOST APPRECIATED. Queen Latifah is in my opinion one of the most attractive people in the celebrity industry, just her projected inner sunshine, her smile, I don't know why but I've always thought her to be absolutely gorgeous, whoa ... don't take that tooo far, lol. Anyway, I wanted to reach out to her organization and see if they had any type of programs, but I didn't think they did that type thing, well I was wrong, just saw this morning that they do!!!!! So if anyone is so inclined to submit my name and request, it's so awkward to send in something saying "hey I'm a great person, would you sponsor a trip for me", lol, I frankly don't know how the heck to even attempt that! So here is her website with several options, including a recorded request: http://www.queenlatifah.com/giveaways/
I have begun to send requests to all Can am dealers hoping someone will see the sincerity in my request and sponsor a used or repo Can Am for the trip....we will see.
Thank you Lisa for the drawings for the Hugs and Smiles logo, looking forward to the next one and making a definite decision. I am reaching out today to get the sponsors for the T shirts and Hats, and getting the journey mapped out....even if it means I have to walk it.....well maybe....but I am moving forward time is precious, if God sees this to be then it will.
An extra prayer or two to the family that supports me, to my friends who have taken this harder than I have....I have had a wonderful last two years, I couldn't have imagined it any better that it has been, and I still see a future of love and laughs, I HAVE NOT THROWN IN THE TOWEL, and anyone thinking that I have only tells me that you don't know me very well. The last week has been very draining and God and I have spent many hours in conversation, but as Joyce tells the story "GET UP" I'm up and stronger than ever!
Love and Light to all who struggle everyday with harder things than I am faced with, I remind you of God's love - always.
Huggs and SMILES.....
The testing to see if I had the "mutation gene" for the first possible treatment was returned negative. So that was a no go. The Dr. then shifted gears to an immunotherapy drug called YERVOY, with no insurance, we are waiting on Bristal Meyers to approve the treatment and provide the drug, that request has been submitted on an emergency need. Wow you don't realize how bad this disease really is until you notice that everything has "emergency" or "priority" or "expedite" attached to it. I've spoken to SSDI 3 times now by phone, no biggie right? until I tell you that THEY called me each time advising that this has been moved to the urgent review pile...again, reality hits. So back to the treatment, it's got a long list of side effects but I'll be monitored closely and none of it is worse that the side effects of not doing it. So the treatments will be 4 infusions (90 minutes) 3 weeks apart from each other. If we get the approval this week I hope to begin treatments next week, we will see. The treatments will take place at MUSC, the Dr will see me before and after each, with blood work done prior to each treatment.
I have relinquished all of my attachment to Janavi Consulting, LLC, but will offer any and all advise that I can to my partner Jan...who is doing an amazing job of moving things forward, which has to be so difficult in these circumstances....please send prayers her way, she is a strong person, but even the strongest can have doubts, worries, fears....even in the presence of God.
I'm moving forward with trying to get a sponsor for the Can Am to make my trip across the US, but that's all in the previous blog. If you find it in your heart to assist with that process, any and all emails that you can send to anyone that you think may be able to help would be MOST APPRECIATED. Queen Latifah is in my opinion one of the most attractive people in the celebrity industry, just her projected inner sunshine, her smile, I don't know why but I've always thought her to be absolutely gorgeous, whoa ... don't take that tooo far, lol. Anyway, I wanted to reach out to her organization and see if they had any type of programs, but I didn't think they did that type thing, well I was wrong, just saw this morning that they do!!!!! So if anyone is so inclined to submit my name and request, it's so awkward to send in something saying "hey I'm a great person, would you sponsor a trip for me", lol, I frankly don't know how the heck to even attempt that! So here is her website with several options, including a recorded request: http://www.queenlatifah.com/giveaways/
I have begun to send requests to all Can am dealers hoping someone will see the sincerity in my request and sponsor a used or repo Can Am for the trip....we will see.
Thank you Lisa for the drawings for the Hugs and Smiles logo, looking forward to the next one and making a definite decision. I am reaching out today to get the sponsors for the T shirts and Hats, and getting the journey mapped out....even if it means I have to walk it.....well maybe....but I am moving forward time is precious, if God sees this to be then it will.
An extra prayer or two to the family that supports me, to my friends who have taken this harder than I have....I have had a wonderful last two years, I couldn't have imagined it any better that it has been, and I still see a future of love and laughs, I HAVE NOT THROWN IN THE TOWEL, and anyone thinking that I have only tells me that you don't know me very well. The last week has been very draining and God and I have spent many hours in conversation, but as Joyce tells the story "GET UP" I'm up and stronger than ever!
Love and Light to all who struggle everyday with harder things than I am faced with, I remind you of God's love - always.
Huggs and SMILES.....
Tuesday, April 8, 2014
HUG AND A SMILE
Hi everyone thanks for taking time out of your day to check in on me.
This weekend was filled with laughter, tears, and a big shot of reality. I was sitting with Jan and the pups, and realized.....DAMN, I want to hug my Brothers just one more time....thank those that influenced my life, and I want to put a smile on as many faces as I possibly can! The last 2 years of my life have been so stress free, so full of love, just so perfect. The last thing I want is to spend any time worried, upset, depressed. I want to laugh, I want to act like a kid, I want to do silly things without worrying about how to pay this or how to pay that....
I was asked recently, so "what's on your bucket list". I could tell it was a little awkward but it was a heart filled question, thank you for asking. The weird thing is the first thought is why, so many others are more deserving of having a wish fulfilled than I, seriously, if you know me, you know how much I mean that. Help my great granddaughter live a happy life, provide financing for those much younger than I who are fighting this battle, or anyone with health battles. There is nothing worse than trying to fight something inside you - to battle for your life and worry constantly about how to pay.
So, the bucket list - I want to hug each of my brothers, my grand kids, put flowers on my Grandparents graves, I want to make a trip across the US on a can am spider to do it....to make a stop at the grand canyon, see Mt. Rushmore, Hey maybe meet Ellen, lol, that would be a hoot. Bottom line, I don't want to worry about finances any more, I'm well schooled in that area, I want to be able to laugh and enjoy every minute, I want to spend it with the person who has brought me so much happiness, I just want to bring smiles across the miles, maybe route it so that I could stop at all the cancer centers across the states as well as the Bariatric groups and just give someone a hug and a smile. As I type this God has put it on my heart to design a "hug and a smile" to distribute on my trip. PEOPLE NEED TO KNOW THAT THEY MATTER.
Ok, it's a done deal, I need some help - who's up for it?
How do I find and convince a sponsor for the following?
CAN AM Spider with HUG AND A SMILE logos
Fuel funding
Lodging across the trip as needed
Pins, teddy bears, T-shirts, Hats, blankets - for the HUG AND A SMILE distribution.
Cancer center clearances to visit
Lists of Bariatric centers
Contributions to maintain finances at home.
OK THIS IS MY MISSION !
If science is correct, time is short....if the Dr. is correct I can touch so many lives with a hug and a smile, and GOD says I have time to touch everyone who needs me with a HUG AND A SMILE.
..and so it shall be.
This weekend was filled with laughter, tears, and a big shot of reality. I was sitting with Jan and the pups, and realized.....DAMN, I want to hug my Brothers just one more time....thank those that influenced my life, and I want to put a smile on as many faces as I possibly can! The last 2 years of my life have been so stress free, so full of love, just so perfect. The last thing I want is to spend any time worried, upset, depressed. I want to laugh, I want to act like a kid, I want to do silly things without worrying about how to pay this or how to pay that....
I was asked recently, so "what's on your bucket list". I could tell it was a little awkward but it was a heart filled question, thank you for asking. The weird thing is the first thought is why, so many others are more deserving of having a wish fulfilled than I, seriously, if you know me, you know how much I mean that. Help my great granddaughter live a happy life, provide financing for those much younger than I who are fighting this battle, or anyone with health battles. There is nothing worse than trying to fight something inside you - to battle for your life and worry constantly about how to pay.
So, the bucket list - I want to hug each of my brothers, my grand kids, put flowers on my Grandparents graves, I want to make a trip across the US on a can am spider to do it....to make a stop at the grand canyon, see Mt. Rushmore, Hey maybe meet Ellen, lol, that would be a hoot. Bottom line, I don't want to worry about finances any more, I'm well schooled in that area, I want to be able to laugh and enjoy every minute, I want to spend it with the person who has brought me so much happiness, I just want to bring smiles across the miles, maybe route it so that I could stop at all the cancer centers across the states as well as the Bariatric groups and just give someone a hug and a smile. As I type this God has put it on my heart to design a "hug and a smile" to distribute on my trip. PEOPLE NEED TO KNOW THAT THEY MATTER.
Ok, it's a done deal, I need some help - who's up for it?
How do I find and convince a sponsor for the following?
CAN AM Spider with HUG AND A SMILE logos
Fuel funding
Lodging across the trip as needed
Pins, teddy bears, T-shirts, Hats, blankets - for the HUG AND A SMILE distribution.
Cancer center clearances to visit
Lists of Bariatric centers
Contributions to maintain finances at home.
OK THIS IS MY MISSION !
If science is correct, time is short....if the Dr. is correct I can touch so many lives with a hug and a smile, and GOD says I have time to touch everyone who needs me with a HUG AND A SMILE.
..and so it shall be.
Results - Negative
While this sounds like an awesome result......it definitely is not what we had hoped for. The AIM site which gives loads of good information on Metastatic Melanoma (good bathroom reading for most) says: "All Stage IV patients should be tested for the BRAF, NRAS, and C-KIT mutations, in order to find out if they are eligible for targeted therapy or a clinical trial using targeted therapy - See more at: http://www.aimatmelanoma.org/en/aim-for-answers/treatment-of-melanoma/treatment-by-stage.html#stage4", guess I failed the Mutation test......
Dr. called today to give me the news, and asked that I come in tomorrow early so we can discuss the possible immunotherapies that are available. No one said this would be an easy journey I know I CAN'T do it alone, God has got this! It's in these times when those around you who are so supportive and remind you of your inner strength, that I reach out to God to give THEM the strength to make this journey with me.
Love and Light to all.....
Thursday, April 3, 2014
Afternoon answers....NOT
It was a very long day yesterday, spent it at MUSC. There were several appointments set, but only two happened. Gave my obligatory tube of blood...lol, then moved on to Dr. Sharai's office. What an incredible man, very compassionate, thorough, and seems to know his stuff. In the process of exchanging what's and when's he became very concerned as to how far the cancer has traveled. Yep, its official I have Metastatic (in multiple locations) Melanoma. Anyway, at that point in the discussion he sent me to the ER next door for an MRI of my brain. Bottom line, no masses or concerns there.....whew....what a relief. Now let's move on.
Seems that there are 2 treatment options, I need to get on line today and start some research, now that it's "named". I stayed in denial through most of this, have had some breakdowns, but just now actually realizing what is going on. No doubt, God has got this, but I need to be sure to do my part.
Love and Light
Seems that there are 2 treatment options, I need to get on line today and start some research, now that it's "named". I stayed in denial through most of this, have had some breakdowns, but just now actually realizing what is going on. No doubt, God has got this, but I need to be sure to do my part.
Love and Light
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