A lady I met through DUC on Facebook, Kat Vecchione, is a rock radio talk show host. She has agreed to interview Raymond and I live on her show to get awareness out about the struggles cancer patients and their families face during the journey!! My nephew, +Jordan Arnold is going to get the "RaymondsHope" website up and running before we do the interview so that it will be live right along with us on the air!
Kat told me that she is also a survivor! She had her last surgery for BC in January. Ironically, it was also the same month when Raymond had his FIRST surgery!
I had absolutely no idea just how many people there are out there that are affected by cancer in one way or another until my son's diagnosis brought us to so many of them. God wanted us to meet all of them because we are hearing so many inspiring stories of survival, strength, determination, and truly brave individuals that we have met.
As I mentioned, Kat's radio talk show is live on Saturdays beginning @ 6pm Eastern time... Here is a link to the website. Feel free to share it with your friends and stop by to check it out live Saturday night! They have a live chat during the show, too. Sounds like fun.
Wednesday, May 22, 2013
Monday, May 20, 2013
LIVESTRONG DAY WAS A SUCCESS...
On behalf of cancer patients everywhere and their families, I want to thank anyone who visited the Livestrong site after reading the blog. As per the post on my fb, the day was a success. The battle against cancer can not be won without the support of everyone!
Here is the link posted on my facebook today from Livestrong:
LIVESTRONG DAY A SUCCESS...
Here is the link posted on my facebook today from Livestrong:
LIVESTRONG DAY A SUCCESS...
Friday, May 17, 2013
PETITION TO CONGRESS
SIGN THIS PETITION TO MAKE CONGRESS ADDRESS FINANCIAL ISSUES REGARDING LONG TERM SERVICES AND SUPPORT FOR DISABLED INDIVIDUALS:
LIVESTRONG DAY...
I got an email from Livestrong today regarding their "Livestrong Day"...
Here is the link....
LIVESTRONG DAY... Livestrong Foundation
Here is the link....
Tuesday, May 14, 2013
All is Put To Right....
So, the Polk County Transit was highly dismayed to hear about how I was treated during what I now call "The Phone Call". They sent a representative over to the house to interview Raymond and he is now approved for his transportation. I'm glad they did the right thing.
Therefore, his second round of treatment started today. Again, he is wiped out from it and his head hurts. Luckily, he still has some of the pain pills left that my sisters bought for him. Four more days of the chemo and another week of the migraines and he'll have another two weeks of peace.
I asked the doctor today when we can officially call him "cancer-free" and she said, "After the chemo treatments are over, we'll do more scans and bloodwork to make sure it's all gone." She sounded really optimistic when she said it. Personally, I think it's "gone" now, but they are just making sure. The only thing that worries me is the fact that it's a "very aggressive" cancer and that sentence she said about it showing signs that it had "infiltrated the blood vessels" around where they had removed the mass. I'm still unclear as to if she meant that it actually DID infiltrate or that it COULD HAVE infiltrated. Either way, the chemo is going as planned and the lung/stomach scans were clear, with the exception of an enlarged lymph node... no, a "larger than normal" lymph node (meaning she wasn't overly concerned, but wasn't willing to take a chance with it, either).
So, it's off to bed for me. Have to rest up to make phone calls tomorrow on Raymond's behalf plus another round of sitting in the hospital for the day.
Oh, yeah... received information from Patient Advocate Center. Great resource for cancer patients (see address and phone # on HELPFUL WEBSITES page)
Therefore, his second round of treatment started today. Again, he is wiped out from it and his head hurts. Luckily, he still has some of the pain pills left that my sisters bought for him. Four more days of the chemo and another week of the migraines and he'll have another two weeks of peace.
I asked the doctor today when we can officially call him "cancer-free" and she said, "After the chemo treatments are over, we'll do more scans and bloodwork to make sure it's all gone." She sounded really optimistic when she said it. Personally, I think it's "gone" now, but they are just making sure. The only thing that worries me is the fact that it's a "very aggressive" cancer and that sentence she said about it showing signs that it had "infiltrated the blood vessels" around where they had removed the mass. I'm still unclear as to if she meant that it actually DID infiltrate or that it COULD HAVE infiltrated. Either way, the chemo is going as planned and the lung/stomach scans were clear, with the exception of an enlarged lymph node... no, a "larger than normal" lymph node (meaning she wasn't overly concerned, but wasn't willing to take a chance with it, either).
So, it's off to bed for me. Have to rest up to make phone calls tomorrow on Raymond's behalf plus another round of sitting in the hospital for the day.
Oh, yeah... received information from Patient Advocate Center. Great resource for cancer patients (see address and phone # on HELPFUL WEBSITES page)
Saturday, May 4, 2013
A Woman's Callous Words Spark a Mission ...
Just when I think we've got one of the issues causing undo stress dealt with, it rears it's ugly head once again!
Before I begin, let me say that, although I AM extremely agitated right now with the memory of what occurred, I am NOT angry with the offensive woman. Rather, I feel sorry for her. I believe that she must be so miserable in her job that she feels the need to belittle others. I pray for her that she has peace and happiness in other areas of her life. Really, all she accomplished in trying to humiliate me, was doing me a favor by strengthening my resolve to help others, and renew my will to fight this disease by my warrior, Raymond's, side! With the restructuring of this blog, people will now find any helpful information I come across right here in one place (see page 4, HELPFUL WEBSITES)
That being said, here is what occurred when I made a simple phone call to schedule Raymond's transportation for the week...
I thought we had settled the issue transportation to get Raymond to and from his chemotherapy appointments for 5 days each month, as well as to his other doctors appointments, through Polk County Transit. After all, PCT called Raymond directly to inform him that his application had been approved and to confirm his appointment time for Monday the 29th for his blood work at the hospital. The driver was on time, courteous, and professional. However, when I called Polk County Transit on Thursday to schedule this week's rides, a woman informed me that they won't transport him because Polk Healthcare Plan stated that his treatment was not a covered service.
Not a covered service? Did I really hear her correctly? Surely she was mistaken. I told her that I would contact the Polk Healthcare Plan and get back with her. God Bless her soul, she actually called me back later on that day. Her name was Katrina and she was very empathetic and kind. Let me publicly say, "Thank you, Katrina." I am still waiting for a call back from Polk County Transit's program director because they are going to try to approve Raymond under the Transportation Disadvantaged Program. X (fingers crossed!).
I then armed myself with the Member Services Handbook and dialed the PHP member services line. Another woman informed me that transportation under the program is only provided for covered services and cancer treatment is not a covered service. Incredulous, I asked her "What do you mean, it's not a covered service? It is going to save his life! The only reason he even applied for the Polk Healthcare Plan was to have an insurance in place during the interim while his medicaid and disability are pending. That way he could begin getting better." Her reply to me... and I'm going to put quotation marks around her exact words as well as highlight it, mainly because I was in absolute shock that she would be so callous in the way that she said these words to a mother whose son is fighting for his life! She said, "Ma'am, we are a COUNTY PROGRAM, paid for by TAX DOLLARS, providing FREE services. Therefore, we will ONLY pay for the absolute minimum care. We will NOT cover the expensive stuff!" (all the words that are in caps is where she raised her voice at me) I even tried to tell her that not only was a tax payer more than half of my life, I also served my country in the United States Navy Seabees, but she didn't even hear me because she kept talking over me.
After picking my dignity up off the floor while catching my breath from the obvious low-blow, I then asked her if it is even worth my son keeping this so-called "health insurance"? In response to my querie she said, "Well sure! If he got the flu or broke his leg, we'd pay for it, (her voice dripping with sarcasm), but we are NOT an insurance company!" Basically, she was making it clear, very bluntly I might add, that the plan he is on will cover A.) ailments that can be actually be taken care of at home with over the counter medications, and B.) crisis situations that hospitals are bound by ethics to treat in emergency rooms, period.
What this tells me is that Polk Healthcare Plan is in place for the benefit of the doctors and hospitals more so than for the patients they contract to cover. Since the plan reimburses for services rendered (provided it falls under "covered benefits"), the doctors and medical facilities then don't get stuck with so many unpaid invoices when their accountants balance the books at the end of the fiscal year. As a result, the bottom lines look better to the government who then continue supplying the grant money for the PHP for another year. Actual life-saving treatments, those are considered (again, I quote) "too expensive". In any other business this would be called "cooking the books."
So, it's back to Google Search and researching alternate resources for me, since I refuse to give up, and I won't let my son give up either! I do have quite a few oars in the water already through several cancer organizations and individuals (please see the "HELPFUL WEBSITES" page of this blog).
I find myself sitting here imagining that the founders of these programs were ordinary folks,like you and me. Maybe they are either a.) survivors themselves or b.) loved ones of a cancer patient, survivor, or victim, or c.) simply a philanthropist looking to do good works. I am willing to venture a guess that they once ran into the same red tape as Raymond and I are encountering. I can further speculate that some of these individuals started many of these foundations and nonprofits out of a sense of urgency to be a part of the solution to a very big problem. I can almost be certain of this because it's exactly the way I felt within moments of hearing that woman's contemptuous tone of voice and unkind words. Almost immediately I felt compelled to take RaymondsHope to the next level. Right now it's just our own little fundraiser to cover the unexpected expenses and help us clear the hurdles we are experiencing. However, after that phone call, I vow to evolve RaymondsHope into a nonprofit, fundraising organization whose soul mission will be to raise funds for cancer patients and their families. It is my sincere intention, God willing, that those affected by cancer can reach out to RaymondsHope with the confidence that they will never be made to feel like second class citizens, as that woman was clearly trying to do to me. As we traverse this minefield, I will be keeping track of the specific issues that we are running into, the services we are having trouble getting, and the necessities that aren't covered (i.e. certain medications, transportation to treatment, chemotherapy, etc.). Then, I will be aware of which areas of contention need to be the focus of RaymondsHope when setting future fundraising goals and events. I also plan to advocate on behalf of cancer patients. I am already in email contact with Representative Grayson (Florida's 9th District) and Senator Rubio. Senator Rubio gave me a direct phone # to call him if I "need any assistance with federal agencies". Guess who will be getting a phone call on Monday morning regarding Polk Healthcare Plan and the transportation issue? Even though PHP is a county program, they are funded by the federal government and must follow the guidelines set forth under the program contract. Under the American's With Disabilities Act, persons with disabilities are entitled to transportation to receive medical treatment if they are "transportation disadvantaged". Neither Raymond nor I are physically able to drive and neither one of us possess a driver's license for that reason and there is no access to public transportation in the rural area of Davenport where we reside. Also, after I post tonight, a copy of this post is going to be emailed to the media (Action News Investigates).
These are my plans for RaymondsHope in the near future, and you can hold me to it. At present, as you are well aware, we are in a battle and all of our energies must stay focused on the fight! When the war is over, though, count on RaymondsHope to be up and running, preparing to alleviate at least a portion of the stress that accompanies the uncertainty and fear that a cancer diagnosis invokes.
Thank you for continuing to follow Raymond's journey. We hope that this blog become a source of hope and information for others. As always, I will continue to update the blog with Raymond's progress as we have many concerned family members and friends who reside in other states.
Before I begin, let me say that, although I AM extremely agitated right now with the memory of what occurred, I am NOT angry with the offensive woman. Rather, I feel sorry for her. I believe that she must be so miserable in her job that she feels the need to belittle others. I pray for her that she has peace and happiness in other areas of her life. Really, all she accomplished in trying to humiliate me, was doing me a favor by strengthening my resolve to help others, and renew my will to fight this disease by my warrior, Raymond's, side! With the restructuring of this blog, people will now find any helpful information I come across right here in one place (see page 4, HELPFUL WEBSITES)
That being said, here is what occurred when I made a simple phone call to schedule Raymond's transportation for the week...
I thought we had settled the issue transportation to get Raymond to and from his chemotherapy appointments for 5 days each month, as well as to his other doctors appointments, through Polk County Transit. After all, PCT called Raymond directly to inform him that his application had been approved and to confirm his appointment time for Monday the 29th for his blood work at the hospital. The driver was on time, courteous, and professional. However, when I called Polk County Transit on Thursday to schedule this week's rides, a woman informed me that they won't transport him because Polk Healthcare Plan stated that his treatment was not a covered service.
WHAT?!?!
Not a covered service? Did I really hear her correctly? Surely she was mistaken. I told her that I would contact the Polk Healthcare Plan and get back with her. God Bless her soul, she actually called me back later on that day. Her name was Katrina and she was very empathetic and kind. Let me publicly say, "Thank you, Katrina." I am still waiting for a call back from Polk County Transit's program director because they are going to try to approve Raymond under the Transportation Disadvantaged Program. X (fingers crossed!).
I then armed myself with the Member Services Handbook and dialed the PHP member services line. Another woman informed me that transportation under the program is only provided for covered services and cancer treatment is not a covered service. Incredulous, I asked her "What do you mean, it's not a covered service? It is going to save his life! The only reason he even applied for the Polk Healthcare Plan was to have an insurance in place during the interim while his medicaid and disability are pending. That way he could begin getting better." Her reply to me... and I'm going to put quotation marks around her exact words as well as highlight it, mainly because I was in absolute shock that she would be so callous in the way that she said these words to a mother whose son is fighting for his life! She said, "Ma'am, we are a COUNTY PROGRAM, paid for by TAX DOLLARS, providing FREE services. Therefore, we will ONLY pay for the absolute minimum care. We will NOT cover the expensive stuff!" (all the words that are in caps is where she raised her voice at me) I even tried to tell her that not only was a tax payer more than half of my life, I also served my country in the United States Navy Seabees, but she didn't even hear me because she kept talking over me.
After picking my dignity up off the floor while catching my breath from the obvious low-blow, I then asked her if it is even worth my son keeping this so-called "health insurance"? In response to my querie she said, "Well sure! If he got the flu or broke his leg, we'd pay for it, (her voice dripping with sarcasm), but we are NOT an insurance company!" Basically, she was making it clear, very bluntly I might add, that the plan he is on will cover A.) ailments that can be actually be taken care of at home with over the counter medications, and B.) crisis situations that hospitals are bound by ethics to treat in emergency rooms, period.
What this tells me is that Polk Healthcare Plan is in place for the benefit of the doctors and hospitals more so than for the patients they contract to cover. Since the plan reimburses for services rendered (provided it falls under "covered benefits"), the doctors and medical facilities then don't get stuck with so many unpaid invoices when their accountants balance the books at the end of the fiscal year. As a result, the bottom lines look better to the government who then continue supplying the grant money for the PHP for another year. Actual life-saving treatments, those are considered (again, I quote) "too expensive". In any other business this would be called "cooking the books."
So, it's back to Google Search and researching alternate resources for me, since I refuse to give up, and I won't let my son give up either! I do have quite a few oars in the water already through several cancer organizations and individuals (please see the "HELPFUL WEBSITES" page of this blog).
I find myself sitting here imagining that the founders of these programs were ordinary folks,like you and me. Maybe they are either a.) survivors themselves or b.) loved ones of a cancer patient, survivor, or victim, or c.) simply a philanthropist looking to do good works. I am willing to venture a guess that they once ran into the same red tape as Raymond and I are encountering. I can further speculate that some of these individuals started many of these foundations and nonprofits out of a sense of urgency to be a part of the solution to a very big problem. I can almost be certain of this because it's exactly the way I felt within moments of hearing that woman's contemptuous tone of voice and unkind words. Almost immediately I felt compelled to take RaymondsHope to the next level. Right now it's just our own little fundraiser to cover the unexpected expenses and help us clear the hurdles we are experiencing. However, after that phone call, I vow to evolve RaymondsHope into a nonprofit, fundraising organization whose soul mission will be to raise funds for cancer patients and their families. It is my sincere intention, God willing, that those affected by cancer can reach out to RaymondsHope with the confidence that they will never be made to feel like second class citizens, as that woman was clearly trying to do to me. As we traverse this minefield, I will be keeping track of the specific issues that we are running into, the services we are having trouble getting, and the necessities that aren't covered (i.e. certain medications, transportation to treatment, chemotherapy, etc.). Then, I will be aware of which areas of contention need to be the focus of RaymondsHope when setting future fundraising goals and events. I also plan to advocate on behalf of cancer patients. I am already in email contact with Representative Grayson (Florida's 9th District) and Senator Rubio. Senator Rubio gave me a direct phone # to call him if I "need any assistance with federal agencies". Guess who will be getting a phone call on Monday morning regarding Polk Healthcare Plan and the transportation issue? Even though PHP is a county program, they are funded by the federal government and must follow the guidelines set forth under the program contract. Under the American's With Disabilities Act, persons with disabilities are entitled to transportation to receive medical treatment if they are "transportation disadvantaged". Neither Raymond nor I are physically able to drive and neither one of us possess a driver's license for that reason and there is no access to public transportation in the rural area of Davenport where we reside. Also, after I post tonight, a copy of this post is going to be emailed to the media (Action News Investigates).
These are my plans for RaymondsHope in the near future, and you can hold me to it. At present, as you are well aware, we are in a battle and all of our energies must stay focused on the fight! When the war is over, though, count on RaymondsHope to be up and running, preparing to alleviate at least a portion of the stress that accompanies the uncertainty and fear that a cancer diagnosis invokes.
Thank you for continuing to follow Raymond's journey. We hope that this blog become a source of hope and information for others. As always, I will continue to update the blog with Raymond's progress as we have many concerned family members and friends who reside in other states.
Wednesday, May 1, 2013
Well, Guy Howie, are you ready to be bald?
Today, Raymond shaved his head. It was coming out in clumps in his hand from the chemo, so he decided to bite the bullet and let Jordan shave it.
As per his promise, my sister's boyfriend, Guy, said he'll be shaving his also! We'll be wanting a picture of that, Guy Howie! LOL!!
At this time in our life, our family is such a blessing! I don't know what we would do without you all. Your thoughts and prayers have been seeing us through and giving us strength. I can not thank you all enough and words can not express how much we love you all!
Ericka, Raymond wants to give his hair to "Locks of Love". How would we go about doing that... I remember your girls did that one year.
As per his promise, my sister's boyfriend, Guy, said he'll be shaving his also! We'll be wanting a picture of that, Guy Howie! LOL!!
At this time in our life, our family is such a blessing! I don't know what we would do without you all. Your thoughts and prayers have been seeing us through and giving us strength. I can not thank you all enough and words can not express how much we love you all!
Ericka, Raymond wants to give his hair to "Locks of Love". How would we go about doing that... I remember your girls did that one year.
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