Monday, November 28, 2011
Feeliin' Hot Hot Hot
I have no patience for long hand recounts. Here's what's up now. Nathan has been admitted to the hospital. He spiked a fever yesterday that went from 100.4 to 102 by the time we were headed to urgent care at Sloan. While in the urgent care center his fever went up to 102.9. He was given tons of fluids, Tylenol and two types of IV antibiotics. They have established that it is a bacterial infection but are not sure what kind it is. He has been admitted and will be here for a few days until the blood cultures come back. Please keep him in your prayers.
Friday, November 25, 2011
Braniacs
I know many of you have been waiting to hear what is going on with the brain MRI. So here's the situation. My parents went on a week's vacation...(oops)!
Apparently, the nurse in Dr. Narayana's office never appealed the rejection by the insurance company. So, the incredible nurse, Jessica, in Dr. Golfinos' office has started working on the appeal for me. I spoke with her on Tuesday because I had scheduled an MRI (self-pay) for Wednesday. Obviously, I didn't want to wait. Then it occurred to me that the doctors might be vacation and not around to read the films. Should I wait after all?
I asked Jessica about this and she said Golfinos would be out on Friday and had surgeries scheduled for next Monday, Tuesday and Wednesday. However, she would squeeze me in by the end of the week. More importantly, she answered the big question I have had which was whether or not it was vital for me to be seen within six weeks of the surgery. Jessica said that, ideally, they wanted to see patients at six weeks but eight was the max. Next week it will be eight weeks which why she is trying to make this happen by next Friday.
I am hopeful this will all get resolved next week and that insurance will pay for it. Thank you to all of you who have advised me to fight the ruling and/or offered to pay or donate funds for the procedure. It has really helped me get a handle on this. Sometimes I forget to be my own advocate.
Hope everyone had a wonderful Thanksgiving. Our family friend, Maia, hosted our entire extended family as well as her own friends and family. There were 22adults, 9 kids, 2 turkeys and a ham not to mention all the fixins. How she did it and with a smile is beyond me. Thanks, Mai. We had a fabulous time and so did Sadie. She ate a lot, danced a lot, played a lot and thoroughly tired herself out. She was so exhausted that she actually asked to home to go to sleep. We will post pictures shortly.
Apparently, the nurse in Dr. Narayana's office never appealed the rejection by the insurance company. So, the incredible nurse, Jessica, in Dr. Golfinos' office has started working on the appeal for me. I spoke with her on Tuesday because I had scheduled an MRI (self-pay) for Wednesday. Obviously, I didn't want to wait. Then it occurred to me that the doctors might be vacation and not around to read the films. Should I wait after all?
I asked Jessica about this and she said Golfinos would be out on Friday and had surgeries scheduled for next Monday, Tuesday and Wednesday. However, she would squeeze me in by the end of the week. More importantly, she answered the big question I have had which was whether or not it was vital for me to be seen within six weeks of the surgery. Jessica said that, ideally, they wanted to see patients at six weeks but eight was the max. Next week it will be eight weeks which why she is trying to make this happen by next Friday.
I am hopeful this will all get resolved next week and that insurance will pay for it. Thank you to all of you who have advised me to fight the ruling and/or offered to pay or donate funds for the procedure. It has really helped me get a handle on this. Sometimes I forget to be my own advocate.
Hope everyone had a wonderful Thanksgiving. Our family friend, Maia, hosted our entire extended family as well as her own friends and family. There were 22adults, 9 kids, 2 turkeys and a ham not to mention all the fixins. How she did it and with a smile is beyond me. Thanks, Mai. We had a fabulous time and so did Sadie. She ate a lot, danced a lot, played a lot and thoroughly tired herself out. She was so exhausted that she actually asked to home to go to sleep. We will post pictures shortly.
Thursday, November 24, 2011
GIVING THANKS!
It's hard to express how truly grateful we are today. I am grateful for something I never thought to be grateful for...to be alive. I know we all think of friends and family as do I, but remember that we must appreciate life as well. Without this remarkable thing called life, we could not be grateful for any of the blessing in our lives.
Thank you, thank you, thank you! To my friends, family and all the strangers who have supported us through this ridiculously difficult year, we couldn't have done it without you.
LOVE, APPRECIATION & GRATITUDE,
Elisa, Nathan and Sadie
Thank you, thank you, thank you! To my friends, family and all the strangers who have supported us through this ridiculously difficult year, we couldn't have done it without you.
LOVE, APPRECIATION & GRATITUDE,
Elisa, Nathan and Sadie
Friday, November 18, 2011
Appealing the Appalling
My loyal family, friends and followers have been sending offers of payment for an MRI and/or encouragement to appeal the denial of authorization for the scan. Therefore, first thing Monday morning, I am going to speak with the insurance company and my physicians. I guess I should have thought of this myself, but, as with everything else these days, I'll blame the cancer for not thinking clearly. Thanks to everyone. I will let you know how it goes.
Thursday, November 17, 2011
No news is good news?
I know it's been ages since my last post but it has been a little crazy. I started an oral chemo called Tykerb. Three days later I had seizure in the street behind a parked car. FYI, New York streets are not uncomfortable places to catch some shut eye. I'm not even sure I feel that badly for the homeless anymore. Ok, bad joke but I make bad jokes about cancer. Why shouldn't everyone be fair game? Perhaps I'll become the Chelsea Handler or Kathy Griffin of cancer.
Anyhoo..the "no news" today is that they canceled my follow up brain MRI and, therefore, the follow up appointment with my radiation oncologist, Dr. Narayana. Who is the "they" and why did "they' cancel it? Excellent questions my friends. My insurance company will not approve the scan until it's been three months from the surgery. Folks, I have a fast growing cancer and another three months does make a difference in my world.
WARNING: ICY ROADS, um, I mean, TANGENT AHEAD. It is beyond me that there is a segment of the population that believes our health care system is just fine the way it is. We definitely have the best doctors and technology but how can we access it in a timely fashion with reasonable compensation? Ok, off my soap box. I think we all agree that there is room for vast improvement. So, the new date for my follow up is December 15th.
I suppose I should be thankful that I can spend Thanksgiving focusing on the things I am grateful for this year. There are things to be grateful for this year..right? I jest. My family and I have many, many blessings for which to be grateful, not the least of which are our family, friends and even strangers who have supported us through these incredibly difficult months. The day after Thanksgiving is another story. I have to get a PET scan that day after right after my chemo treatment. I won't find out the results from that scan until the following Thursday so I will have a whole week to worry about that. Whatever the results are I have something to look forward to...a trip to Puerto Rico!
Yes, we are finally getting the heck out of dodge. I think I have mentioned my dear, college friend, Marcos. Well, he and his family have generously offered their beach condo in Aguadilla to us. When this all began back in February, he began insisting we get away for awhile. As you all know that has been impossible because we have constantly been contending with a new development: a seizure, a surgery, a hospital stay. You know...the usual. However, there is a small window coming up when we can take advantage of this offer. We will be there from the 3rd of December until the 8th. We can't wait. And there is more good news on the horizon. Nathan's reconnection surgery has been scheduled for January 5th, 2012. I know a lot of people think that 2012 might be the year of the apocalypse but that's impossible. We deserve a year of joy and well-being. Let's not ruin it with the end of the world, people!
I have promised to be a more regular poster in the past but it's sort of like my promises to stick to a diet for more than three days. Let's be right with ourselves (homage to Joy Demarest), it ain't going to happen folks. Please check the Team Bond Facebook group for mini-updates.
Much love,
Elisa
Anyhoo..the "no news" today is that they canceled my follow up brain MRI and, therefore, the follow up appointment with my radiation oncologist, Dr. Narayana. Who is the "they" and why did "they' cancel it? Excellent questions my friends. My insurance company will not approve the scan until it's been three months from the surgery. Folks, I have a fast growing cancer and another three months does make a difference in my world.
WARNING: ICY ROADS, um, I mean, TANGENT AHEAD. It is beyond me that there is a segment of the population that believes our health care system is just fine the way it is. We definitely have the best doctors and technology but how can we access it in a timely fashion with reasonable compensation? Ok, off my soap box. I think we all agree that there is room for vast improvement. So, the new date for my follow up is December 15th.
I suppose I should be thankful that I can spend Thanksgiving focusing on the things I am grateful for this year. There are things to be grateful for this year..right? I jest. My family and I have many, many blessings for which to be grateful, not the least of which are our family, friends and even strangers who have supported us through these incredibly difficult months. The day after Thanksgiving is another story. I have to get a PET scan that day after right after my chemo treatment. I won't find out the results from that scan until the following Thursday so I will have a whole week to worry about that. Whatever the results are I have something to look forward to...a trip to Puerto Rico!
Yes, we are finally getting the heck out of dodge. I think I have mentioned my dear, college friend, Marcos. Well, he and his family have generously offered their beach condo in Aguadilla to us. When this all began back in February, he began insisting we get away for awhile. As you all know that has been impossible because we have constantly been contending with a new development: a seizure, a surgery, a hospital stay. You know...the usual. However, there is a small window coming up when we can take advantage of this offer. We will be there from the 3rd of December until the 8th. We can't wait. And there is more good news on the horizon. Nathan's reconnection surgery has been scheduled for January 5th, 2012. I know a lot of people think that 2012 might be the year of the apocalypse but that's impossible. We deserve a year of joy and well-being. Let's not ruin it with the end of the world, people!
I have promised to be a more regular poster in the past but it's sort of like my promises to stick to a diet for more than three days. Let's be right with ourselves (homage to Joy Demarest), it ain't going to happen folks. Please check the Team Bond Facebook group for mini-updates.
Much love,
Elisa
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