Well, both are true actually. They finally did approve the Gleevec. However, my copay is still extremely high. I have contacted NOVARTIS, who is the company that actually makes the drug, and they have a patient co-pay assistance program. I gave them all of my information today, and they are supposed to get back to me in a few days about how much they could assist me with. Not sure if this is correct, but when the first lady I talked to was giving me the general information on the assistance program, she told me that it was possible to get the drug FREE for a year! Not sure how that all works, but that is definately a huge prayer request, that I could get some or full assistance in paying for the medication. My parents are helping me pay for the drug with the co-pay as is, so at least I am now ON the Gleevec, and hopefully it will be helping my "myloproliferative disease" to go into remission.
Another piece of good news is that I am feeling quite a bit better. Dr. Fay gave me a new pain medication yesterday, and it is actually helping me. So I got to sleep a few hours last night which was nice.
Thank you all for your continued prayer support and comments.
In His Grace,
Luke
Thursday, August 27, 2009
Wednesday, August 26, 2009
Pain vs. insurance companies...
As my blog post suggests, we're still fighting with my insurance company CIGNA, to approve the medicine Dr. Fay prescribed, being the miracle drug that he believes will send my white blood cell count into remission, thus allowing me to feel much much better. By the way, if anyone works for them, I'll be your best friend if you can slip me an approval letter under the table! hehe.
The pain has been pretty unbearable the last couple of days since I got out of the hospital. I look like a 100 year old man who has had hip surgery when I walk-which is pretty entertaining when mom and I were eating at IHOP yesterday and everyone was looking at me like, what is WRONG with that man? He looks so young and healthy. Ha ha-not! I slept probably a total of 4 hours over the last 48 hours, however, God is def using this to get me to pray more! And although it sometimes feels like begging God for mercy, just beginning to talk to the Lord allows my soul to quiet down and me to begin to see His perspective and not my own limited human one.
So we did see Dr. Fay again today...he was expecting me to be bounding up the hallway, already having gotten the Gleevec, and almost cured. But was very upset to find the insurance company had still not approved it. I guess the insurance company would rather pay for a hospital stay than approve this drug. (did I mention how expensive it is? I mean, I wouldn't want to pay it either, but you know, it's kind of their JOB.)
In other humorous news, two funny stories have happened today...
one of them was when mom and I were waiting to see Dr. Fay, his nurse came in to talk to us. She was filling us in on everything SHE had been doing on her part to get this med for me, checking on every sample in the building, etc. Mom got a bit teary-eyed because she understands how much pain I'm in and hates that it's taking this long to get the medication. Julie, in a very compassionate way and most sincerely, grabs a box of what she thought were tissues from a shelf in the dr office, hands them to my mom, and my mom draws out what she thought was a tissue. Then, as mom begins to put the "tissue" to her eyes, she feels the rubber like material, and begins to make out fingers and a thumb to what actually was not a tissue at all, but had been a box of RUBBER GLOVES!!! As soon as Julie, the nurse walked out, mom begins to laugh hysterically, tells me what had happened, and we both were in stitches at that time. (in stitches...hmmm...how did that saying ever earn the meaning of laughing a lot? weird.) Just the image of this sweet nurse in all her compassion giving mom a box of rubber gloves to ease her emotions put us over the edge. :)
-the 2nd one is more of a funny coincidence. So, long story short, my best friend growing up is a guy named Chuck Haddox. I sang in Chuck's wedding 3 years ago, when he married a wonderful woman named Beth Trenz. Beth has a sister that mom knew was a nurse "somewhere in Dallas." So, today, I get called back to the Dr's office out of the waiting room by a very sweet tall blonde woman. She took my weight, blood pressure, temperature as the nurses always do, and brought me into the actual dr's office. She was so sincere and compassionate as she learned of my dealing with this disorder, and that I had only recently learned about it a couple of months ago. She left, and mom said something about her really looking and sounding a lot like Beth, Chuck's wife. I agreed, but neither of us thought much about it. Then mom said she thought Beth's sister was in fact a nurse in the Dallas area, and that wouldn't that be funny if it WAS Beth's sister. She asked Julie (Dr. Fay's personal nurse) about the "blonde woman who was just in here", and Julie said her name was Susan but didn't know much else about her. Ha-so as you can imagine where this story is going, mom called her friend and Chuck's mom, Nancy Haddox (hey Nancy!), and found out that indeed, Beth's sister's name was Susan, and 3 years ago, we were all in the same church building in Cincinatti, under very different circumstances, seeing her sister and my friend get married! Ha-wow. Thank you God for good times and funny circumstances.
On a sad note, I was supposed to fly out to Florida tomorrow to one of my closest friends weddings, who was my roomate in NYC for 2 years, and who I had worked with in Japan at Tokyo Disney. I will not be able to make that trip, but wish Scott and Delores all the best, and thank them so much for understanding these crazy circumstances and being so great about praying for me.
And again, thank you ALL for your incredible support and prayers. I see Jesus' hand working in all of this, and even though I do get frustrated and upset about things not happening faster, I know "He's working everything for the good of those who love Him." (no matter if that "feels" good at this time or not). That's one of the best things about the Lord I think. He knows what is His best for us...not our best for ourselves, but His best, and if we allow Him and continue to choose Him, He will reveal that in us. It might not seem good at the time, especially if we never see the payoff or good, but God is such a big God and true to His Word and has never lied to us, we can BELIEVE His Truth and trust that it truly is all working together for His good.
Ok, enough preaching for today (can I get a hallelujah anyone? Or if you're watching "Diary of a Mad Blackwoman", HALLELURYEH!)
Haha. Thanks for reading this novel and may the Lord bless each of you!
Luke
The pain has been pretty unbearable the last couple of days since I got out of the hospital. I look like a 100 year old man who has had hip surgery when I walk-which is pretty entertaining when mom and I were eating at IHOP yesterday and everyone was looking at me like, what is WRONG with that man? He looks so young and healthy. Ha ha-not! I slept probably a total of 4 hours over the last 48 hours, however, God is def using this to get me to pray more! And although it sometimes feels like begging God for mercy, just beginning to talk to the Lord allows my soul to quiet down and me to begin to see His perspective and not my own limited human one.
So we did see Dr. Fay again today...he was expecting me to be bounding up the hallway, already having gotten the Gleevec, and almost cured. But was very upset to find the insurance company had still not approved it. I guess the insurance company would rather pay for a hospital stay than approve this drug. (did I mention how expensive it is? I mean, I wouldn't want to pay it either, but you know, it's kind of their JOB.)
In other humorous news, two funny stories have happened today...
one of them was when mom and I were waiting to see Dr. Fay, his nurse came in to talk to us. She was filling us in on everything SHE had been doing on her part to get this med for me, checking on every sample in the building, etc. Mom got a bit teary-eyed because she understands how much pain I'm in and hates that it's taking this long to get the medication. Julie, in a very compassionate way and most sincerely, grabs a box of what she thought were tissues from a shelf in the dr office, hands them to my mom, and my mom draws out what she thought was a tissue. Then, as mom begins to put the "tissue" to her eyes, she feels the rubber like material, and begins to make out fingers and a thumb to what actually was not a tissue at all, but had been a box of RUBBER GLOVES!!! As soon as Julie, the nurse walked out, mom begins to laugh hysterically, tells me what had happened, and we both were in stitches at that time. (in stitches...hmmm...how did that saying ever earn the meaning of laughing a lot? weird.) Just the image of this sweet nurse in all her compassion giving mom a box of rubber gloves to ease her emotions put us over the edge. :)
-the 2nd one is more of a funny coincidence. So, long story short, my best friend growing up is a guy named Chuck Haddox. I sang in Chuck's wedding 3 years ago, when he married a wonderful woman named Beth Trenz. Beth has a sister that mom knew was a nurse "somewhere in Dallas." So, today, I get called back to the Dr's office out of the waiting room by a very sweet tall blonde woman. She took my weight, blood pressure, temperature as the nurses always do, and brought me into the actual dr's office. She was so sincere and compassionate as she learned of my dealing with this disorder, and that I had only recently learned about it a couple of months ago. She left, and mom said something about her really looking and sounding a lot like Beth, Chuck's wife. I agreed, but neither of us thought much about it. Then mom said she thought Beth's sister was in fact a nurse in the Dallas area, and that wouldn't that be funny if it WAS Beth's sister. She asked Julie (Dr. Fay's personal nurse) about the "blonde woman who was just in here", and Julie said her name was Susan but didn't know much else about her. Ha-so as you can imagine where this story is going, mom called her friend and Chuck's mom, Nancy Haddox (hey Nancy!), and found out that indeed, Beth's sister's name was Susan, and 3 years ago, we were all in the same church building in Cincinatti, under very different circumstances, seeing her sister and my friend get married! Ha-wow. Thank you God for good times and funny circumstances.
On a sad note, I was supposed to fly out to Florida tomorrow to one of my closest friends weddings, who was my roomate in NYC for 2 years, and who I had worked with in Japan at Tokyo Disney. I will not be able to make that trip, but wish Scott and Delores all the best, and thank them so much for understanding these crazy circumstances and being so great about praying for me.
And again, thank you ALL for your incredible support and prayers. I see Jesus' hand working in all of this, and even though I do get frustrated and upset about things not happening faster, I know "He's working everything for the good of those who love Him." (no matter if that "feels" good at this time or not). That's one of the best things about the Lord I think. He knows what is His best for us...not our best for ourselves, but His best, and if we allow Him and continue to choose Him, He will reveal that in us. It might not seem good at the time, especially if we never see the payoff or good, but God is such a big God and true to His Word and has never lied to us, we can BELIEVE His Truth and trust that it truly is all working together for His good.
Ok, enough preaching for today (can I get a hallelujah anyone? Or if you're watching "Diary of a Mad Blackwoman", HALLELURYEH!)
Haha. Thanks for reading this novel and may the Lord bless each of you!
Luke
Monday, August 24, 2009
"Gettin' out of Town...!"
So good news! Its amazing what things can happen when doctors are involved. So my hematologist/oncologist, Dr. Fay here at Baylor Medical Center comes in the room about an hour ago and says "let's get you the hell outta here!". Ha-you have to know him and his sense of humor, but I was like "yes!". So he said that he is going to get the pharmacy to get me some Gleevec, which is the medication I was supposed to be on last week but was having a problem getting it cause of insurance. So he will get that for me today, and will get me out of here today as well. So looks like I'm going to be released from the hospital today! Praise the Lord. So if anybody was thinking of coming up here this afternoon or evening, I probably won't be here, so call or text me before you come. Thank you for all your prayers! God is so good. Hopefully once I get started on the Gleevec pill, that will help this pain go away and my white blood cells will start going into remission. Again, thank you all for your comments, words of encouragment and prayers.
Will update more soon,
Luke
Will update more soon,
Luke
Sunday, August 23, 2009
"Here we go again..."
So, as my last post says, I had been experiencing some pains over the last 48 hours. Last night they got unbearable, and I stopped by some awesome church brother's apt and asked them to take me to the emergency room. I remembered Dr. Fay telling me that if I felt like I could make it to Baylor Medical in Dallas, that it'd be best to go to the emergency room there, so I'd already be in the system where he is (my oncologist/hematologist). So, my friends helped get me there, get seen by the doctor, and found out my white blood cell count was up again to 44,000. The last 2 weeks or so, it's been hovering around 33,000, which is still a bit elevated, but I suppose not as bad and still manageable. But for some reason my WBC jumped to 44k, and is probably what caused my intense pain last night. The admitting doctor was afraid I had an infection so he did a few tests...a spinal tap for spinal meningitis, chest x-ray, took blood and urine samples. So far, all is clear, more results to come later. I was given a hospital room around 4:45am. Mom and dad got here at 3am in emerg room, after having gotten stopped by a cop along the way for speeding with their hazards on--but praise the Lord only got a slow down warning. Ha-I told my brother Chad who had made it by then that he needed to call them and say slow down but oops too late. Oh well, glad they made it asap. They started me on pain medication (NOT morphine as I had a bad reaction to it at Hendrick Hospital in Abilene), but rather on an anti-inflammatory pain med called Toradol. Now I'm on a pain med called diladid. I'm also taking antibiotics zosyn and voncomycin to get my WBC down. The pain is pretty much subsided. yeah! Hopefully, the on-call doctor for Dr. Fay this weekend will be in soon and we can figure out what the next step is.
Thank you all for your prayers. Would love visitors if any of you are near the Dallas area. God is good and has been so faithful during this time.
"His strength made perfect in our weakness!"
Thank you Lord!
Thank you all for your prayers. Would love visitors if any of you are near the Dallas area. God is good and has been so faithful during this time.
"His strength made perfect in our weakness!"
Thank you Lord!
Saturday, August 22, 2009
Pain, pain, go away...come again another day...
The last 48 hours have been probably the most pain I've had since the hospital stay in July in Abilene. It began in my arm, and moved to my hips, back and legs. It always makes sleeping very difficult. I'm usually counting the hours to be able to take another dose of Advil (every 6 hours). I tried to sleep it off today and was pretty lazy, aside from trying to do some choreography for an audition I have to run tomorrow for one of my jobs at Casa Manana. I'm getting to choreograph for their children's musical, Jungle Book. I've very excited about it. It'll have Equity adult actors for the main roles, and chilren for the ensemble and younger parts. The pain made it a bit hard, but God has allowed the pain to subside somewhat and now its just in my left arm.
Another bit of frustrating news is that this new "miracle" pill they wanted me to start taking on Thursday-Gleevec-is taking a while to get approved. Turns out, because its such an expensive and major medicine to take, that the doctor has to "pre-approve" it, meaning not just write a prescription or fax over his signature, but literally call the insurance company and state why I need this medication. I just got off the phone with the insurance company, and they said it'll be at least 2-4 MORE business days before I can get the Gleevec. Grr...Ok Lord, help me to trust You during this time, and not get irritable. For those of you who know me well, this is definately a challenge for me, but God is trying to teach me patience, love for those dang (ahem) insurance people, and to remember that He is good all the time. I just read Meredith Stedham's blog entry and if you know her, I would highly suggest following it (even if you don't!). Her journey is amazing and much more crazy and challenging than mine as she is dealing with breast cancer. She definately has the right perspective and I'm inspired by her joy and peace through it all.
Thanks so much for your prayers and I am praying for y'all as well.
"For He said to me, 'My grace is sufficent for you, for My power is made perfect in your weakness,' therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 2 Cor 12:9
Another bit of frustrating news is that this new "miracle" pill they wanted me to start taking on Thursday-Gleevec-is taking a while to get approved. Turns out, because its such an expensive and major medicine to take, that the doctor has to "pre-approve" it, meaning not just write a prescription or fax over his signature, but literally call the insurance company and state why I need this medication. I just got off the phone with the insurance company, and they said it'll be at least 2-4 MORE business days before I can get the Gleevec. Grr...Ok Lord, help me to trust You during this time, and not get irritable. For those of you who know me well, this is definately a challenge for me, but God is trying to teach me patience, love for those dang (ahem) insurance people, and to remember that He is good all the time. I just read Meredith Stedham's blog entry and if you know her, I would highly suggest following it (even if you don't!). Her journey is amazing and much more crazy and challenging than mine as she is dealing with breast cancer. She definately has the right perspective and I'm inspired by her joy and peace through it all.
Thanks so much for your prayers and I am praying for y'all as well.
"For He said to me, 'My grace is sufficent for you, for My power is made perfect in your weakness,' therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 2 Cor 12:9
Friday, August 21, 2009
Health and Africa
Thanks for reading my blog! This is just an easier way to communicate more effectively what's going on in my world! Here is the latest health update...
-I went to the dr again this past Wednesday. His name is Dr. Joseph Fay, one of the oncologist/hematologists at Baylor Medical Center in Dallas, where I am going now. After the recent bone marrow tests, he has come to the conclusion that either I have a condition known as "myloproliferative disorder" of the bone marrow, or I have chronic myologeous leukimia. Either of these conditions would make the same treatment necessary. The doctors can not come to a complete diagnosis of either one of these, however, as the same steps are necessary in both cases, we are proceeding on. That treatment will involve a pill that I will start on next week called Gleevec, a medicine used to treat chronic leukimia patients. It is a mild form of chemotherapy (w/o any of the bad side effects), that will hopefully send my white blood cells into remission, and allow me to feel much better. The doctor is going to go ahead and pursue a bone marrow tranplant donor, in case one is necessary in the future. Hopefully however, the Gleevec pill will work well, and the transplant will be an option only later on. However, if it doesn't work, and/or if my condition gets worse, then they will accelerate the donor/transplant process, to pursue that faster. Thank you for everyone who has offered their bone marrow to me should I need it! They are going to go ahead and type my brothers, because full-blood siblings are usually a pretty close match. If not them, then they have to use the American Donor List, which anyone can be on, you just have to be typed at a doctor's office and be put on the list. That is the latest update. God has been so good in giving me peace and support through this whole time. I am so blessed with incredible family and friends who are praying for me constantly and honestly, I am confident that the Lord is using this whole experience for my good and to bring myself and others closer to walking with Jesus intimately. That is the purpose of our lives and should we get 100 more years on this earth, or 1 more day, God is good and as Paul says, "for me to live is Christ and to die is gain." (Phillipians 1:21)
Something else that I am really excited about coming up is my trip to Burkina Faso, West Africa. I'm a member of a church body in Ft Worth called Southside City Church, and we are partnering with the ministry called Heal the World out of Irvine, CA to begin the process of teaching English in Burkina Faso. This past summer, they opened the first English Language Institute, where 150 students were able to be taught English, as well as learn about Jesus and the Word of God. We will be doing this on my trip as well, which will be happening Oct 5-12. I will be writing more about this trip soon, but would definately covet your prayers about this trip, as it will be such a great opportunity to love on people who circumstancially have much less than we do, but are people just like us. Pray for God to open up doors there, for the finances of my trip and others going, for the people suffering with HIV and AIDS who we will be getting to love on and minister to, and most of all the we would love these people as Jesus would and grow closer to them and Him thru the process.
Thank you for taking the time to read my update. Please let me know how I can be in prayer for all of you.
By His Grace,
Luke Longacre
-I went to the dr again this past Wednesday. His name is Dr. Joseph Fay, one of the oncologist/hematologists at Baylor Medical Center in Dallas, where I am going now. After the recent bone marrow tests, he has come to the conclusion that either I have a condition known as "myloproliferative disorder" of the bone marrow, or I have chronic myologeous leukimia. Either of these conditions would make the same treatment necessary. The doctors can not come to a complete diagnosis of either one of these, however, as the same steps are necessary in both cases, we are proceeding on. That treatment will involve a pill that I will start on next week called Gleevec, a medicine used to treat chronic leukimia patients. It is a mild form of chemotherapy (w/o any of the bad side effects), that will hopefully send my white blood cells into remission, and allow me to feel much better. The doctor is going to go ahead and pursue a bone marrow tranplant donor, in case one is necessary in the future. Hopefully however, the Gleevec pill will work well, and the transplant will be an option only later on. However, if it doesn't work, and/or if my condition gets worse, then they will accelerate the donor/transplant process, to pursue that faster. Thank you for everyone who has offered their bone marrow to me should I need it! They are going to go ahead and type my brothers, because full-blood siblings are usually a pretty close match. If not them, then they have to use the American Donor List, which anyone can be on, you just have to be typed at a doctor's office and be put on the list. That is the latest update. God has been so good in giving me peace and support through this whole time. I am so blessed with incredible family and friends who are praying for me constantly and honestly, I am confident that the Lord is using this whole experience for my good and to bring myself and others closer to walking with Jesus intimately. That is the purpose of our lives and should we get 100 more years on this earth, or 1 more day, God is good and as Paul says, "for me to live is Christ and to die is gain." (Phillipians 1:21)
Something else that I am really excited about coming up is my trip to Burkina Faso, West Africa. I'm a member of a church body in Ft Worth called Southside City Church, and we are partnering with the ministry called Heal the World out of Irvine, CA to begin the process of teaching English in Burkina Faso. This past summer, they opened the first English Language Institute, where 150 students were able to be taught English, as well as learn about Jesus and the Word of God. We will be doing this on my trip as well, which will be happening Oct 5-12. I will be writing more about this trip soon, but would definately covet your prayers about this trip, as it will be such a great opportunity to love on people who circumstancially have much less than we do, but are people just like us. Pray for God to open up doors there, for the finances of my trip and others going, for the people suffering with HIV and AIDS who we will be getting to love on and minister to, and most of all the we would love these people as Jesus would and grow closer to them and Him thru the process.
Thank you for taking the time to read my update. Please let me know how I can be in prayer for all of you.
By His Grace,
Luke Longacre
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