We are down to the last full week of summer break. We only have a few supplies to buy for Kyle and then the kids will be ready for school. On Tuesday Cody will get oriented with the Middle School and meet this years teachers. Katie will be at the same school, but they have made major improvements and she is excited to see what they have done. Kyle is going into High School and just received his schedule during his orientation; he hopes that he does not get lost.
Tom continues with his health care. Last Thursday Tom and I were able to meet one of the Lymph edema Therapists. She went over Tom's case and explained in detail how the Lymph nodes work with the body. I once again am amazed at how the human body is made up and works together to keep us healthy. She did a demonstration of how to manually drain the lymph nodes, which is about a 10 minute process that he will need to do everyday. Tom will wear a compression bandage around his neck and a "stocking" with a compression bandage on his right cheek each night while he sleeps. She also confirmed that this is a lifestyle that Tom will practise for the rest of his life. Tom will start this Physical Therapy the week after Labor Day.
I also had a call from the Grievance Coordinator at the insurance company. Tom's PET scan has been denied once again. I asked for the Committee Appeals Meeting transcripts and told them that we will take this Appeal to the next level. I have received the hundreds of pages of notes and plan to bring them to Tom's Oncology appointment this Thursday to go over the necessary steps.
Unfortunately it is taking a little longer this time around for the Calcitonin levels to be reported from the lab. It should be reported in the next few days and I am anxious to know what they are. Tom is feeling much better since he received his new Thyroid medicine. I can tell that they are helping with his energy level. Some days I feel that I have my healthy husband back.
This week has been a blow to Tom and I. As we try to comprehend the steps to take and what this means to Tom's care, we are learning how to handle each other's reactions to this news. I have to admit that tension was a little high here for a few days. It is another reminder that there is no "quick fix" and that this disease is life changing. This brings back the meaning of why we wanted to share life with each other and the love that brought us and keeps us together. Life is hard to handle and love smooths our paths. I will conclude with a verse that is so embedded into my being and I hope that you feel it too:
"Love is very patient and kind, never jealous or envious, never boastful or proud, never haughty or selfish or rude. Love does not demand its own way. It is not irritable or touchy. It does not hold grudges and will hardly even notice when others do it wrong. It is never glad about injustice, but rejoices whenever truth wins out." 1 Corinthians 13:4-6
Sunday, August 30, 2009
Sunday, August 23, 2009
Fragile Life
We are definitely into football season once again at the Andrew's household. Cody had his first week of football practice and he was all smiles on Thursday when he could "make contact". Kyle will be on the field this Friday night during the first Wayland football game half-time band performance. The game is Wayland Wildcats vs. Jenison Wildcats. For those who do not know, I grew up in Jenison. When asked by Katie who I will be cheering for, I told her the Wildcats of course! She told me that if I cheer during Jenison's good fortune she will have to tickle me :)
There was another round of phone calls during the week. The Grievance Coordinator called to confirm information about Tom's case & to ask further questions. I am told that on Wednesday he will present the case to the committee and that our Case Manager will let me know the outcome. Tom had his blood work done last week and if the results can be forwarded by the time of presentation, it will also be included. On Friday, Tom's primary office called and said that his Thyroid levels were a little low. He will need to get a small tweak of his medicine. His results for the oxygen test were also completed. His oxygen levels are considered normal.
As we patiently await for the results of yet another round of insurance approvals, calcitonin levels, and x-ray readings; we continue with life. Today in church our pastor was talking about how fragile life is as there have been two young deaths in our community. This touched my heart and made me think about the many people who are asking "Why" Though that is a valid question, I believe that we sometime focus on the question when it could be a time of deepening our faith & letting God lead the way of His will. I will conclude with a verse our pastor shared:
Psalm 24:1-2 "The earth is the Lord's and everything in it, the world, and all who live in it; for he founded it upon the seas and established it upon the waters."
There was another round of phone calls during the week. The Grievance Coordinator called to confirm information about Tom's case & to ask further questions. I am told that on Wednesday he will present the case to the committee and that our Case Manager will let me know the outcome. Tom had his blood work done last week and if the results can be forwarded by the time of presentation, it will also be included. On Friday, Tom's primary office called and said that his Thyroid levels were a little low. He will need to get a small tweak of his medicine. His results for the oxygen test were also completed. His oxygen levels are considered normal.
As we patiently await for the results of yet another round of insurance approvals, calcitonin levels, and x-ray readings; we continue with life. Today in church our pastor was talking about how fragile life is as there have been two young deaths in our community. This touched my heart and made me think about the many people who are asking "Why" Though that is a valid question, I believe that we sometime focus on the question when it could be a time of deepening our faith & letting God lead the way of His will. I will conclude with a verse our pastor shared:
Psalm 24:1-2 "The earth is the Lord's and everything in it, the world, and all who live in it; for he founded it upon the seas and established it upon the waters."
Sunday, August 16, 2009
Busy Week w/No Results
We are well on our way to getting the kids ready for back to school. Kyle, Tom, & I went shopping together for Kyle's first year in High School. We had a successful day and everyone left feeling happy about the purchases. Kyle liked his clothes, Tom liked his style, & I liked the deals!
I received a phone call from Tom's Case Manager. Everything has been faxed to the Grievance Dept of our insurance company and his case will be reviewed on August 19 for his Pet Scan Approval. On Thursday I was trading phone calls with the Office Manager at Tom's primary office. I had to laugh when she called, Tom answered the phone, and she said, "Hi Tom, can I talk with Val." Apparently she knows that I am his official Health Advocate. That night Tom successfully completed his Pulse oximetry test. This time he left it on his hand all night. On Friday Tom saw a Lymphedema Specialist. Dr. Hodgson went over Tom's medical history and has determined that Tom needs to see a Therapist in his office. These sessions may include the manual lymphomic drainage, bandaging, and therapeutic exercises. He may be fitted with a compression garment to wear at night to prevent fluid buildup. Tom envisioned a hockey mask, like Jason from Friday the 13th. That will be something to wake up next to! I plan to accompany him to his PT as I will need to learn how to preform these procedures at home.
On Thursday, August 20th Tom heads back to Spectrum for more blood work and a chest x-ray. His next doctor visits are on September 3rd with his Oncologist and September 4 with his Primary. What a way to kick off the holiday weekend! Tom continues to work extra shifts at both hospitals but has assured me that he will slow down after Labor Day. Gee, what a coincidence, the start of College Football Season!
I was looking over Jeremiah once again and found a verse that spoke to me. Not sure if I shared this one before or not but it fits into our time of life. "For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope. In those days when you pray, I will listen. You will find me when you seek me, if you look for me in earnest.: Jeremiah 29:11-13
I received a phone call from Tom's Case Manager. Everything has been faxed to the Grievance Dept of our insurance company and his case will be reviewed on August 19 for his Pet Scan Approval. On Thursday I was trading phone calls with the Office Manager at Tom's primary office. I had to laugh when she called, Tom answered the phone, and she said, "Hi Tom, can I talk with Val." Apparently she knows that I am his official Health Advocate. That night Tom successfully completed his Pulse oximetry test. This time he left it on his hand all night. On Friday Tom saw a Lymphedema Specialist. Dr. Hodgson went over Tom's medical history and has determined that Tom needs to see a Therapist in his office. These sessions may include the manual lymphomic drainage, bandaging, and therapeutic exercises. He may be fitted with a compression garment to wear at night to prevent fluid buildup. Tom envisioned a hockey mask, like Jason from Friday the 13th. That will be something to wake up next to! I plan to accompany him to his PT as I will need to learn how to preform these procedures at home.
On Thursday, August 20th Tom heads back to Spectrum for more blood work and a chest x-ray. His next doctor visits are on September 3rd with his Oncologist and September 4 with his Primary. What a way to kick off the holiday weekend! Tom continues to work extra shifts at both hospitals but has assured me that he will slow down after Labor Day. Gee, what a coincidence, the start of College Football Season!
I was looking over Jeremiah once again and found a verse that spoke to me. Not sure if I shared this one before or not but it fits into our time of life. "For I know the plans I have for you, says the Lord. They are plans for good and not for evil, to give you a future and a hope. In those days when you pray, I will listen. You will find me when you seek me, if you look for me in earnest.: Jeremiah 29:11-13
Sunday, August 9, 2009
Phone Tag
What a stormy, humid day we are experiencing. I am very grateful to have air conditioning today. All of our children's birthday parties are done for the year (we enjoyed spending time with family & friends) and the kids had a great time at all of them. For Cody's 13th Tom and the guys played Paint Ball. They all came back with smiles and many had a few war bruises too. Then it was off to Band camp for the week. Tom and Kyle returned yesterday from Camp at Fort Custer in Battle Creek. They both came home tanned and tired. I believe Tom was surprised at the walking he did last week. Was it comparable to the marching the kids did? They both seemed to have had a good experience.
I decided to not post last week as I was awaiting answers to my voice mails that I left at various offices. Hands down to Tom's primary office once again! The Office Manager was the only one to return my phone call. They have not had a status update on the PET Scan and she said that she would not be surprised if there was no determination until mid week next week. Tom also tried to do the oxygen test 1 1/2 weeks ago. There is a small machine that hooks a clamp to the tip of your finger and it monitors the levels that Tom is breathing in. Even though Tom taped it heavily to his finger he took it off sometime during the night. When he woke up the next morning he knew that he must have taken it off somehow in his sleep as it couldn't have just fallen off. They are now trying to reschedule getting the machine back to Tom so that he can retake it as they only recorded 2 hours. I do have to add that Tom's Case Manager was on vacation last week. I hope to hear from her no later than Tuesday to get some type of update.
I also appreciated getting advice from an acquaintance about the procedure of Insurance Companies and a few tips about getting results. Tom and I talked about how to go about fighting these denials and that I should be the one to handle these important steps. I do feel better prepared if there should be another denial. I also know that I have the backing of Tom's doctors and their assistance in anything that we need. I am so grateful for the prayer warriors that put forth our various needs before our God. I don't know how we can keep focused without their words of encouragement an knowing that we are not alone. Thank you a million time over!
This leads me to the passage about being persistent in prayer for the things we need. There is a story in Luke that says a friend pounds on a man's door at midnight asking for something to eat and the man does not want to help at this hour. The Bible says: "But I'll tell you this-though he won't do it as a friend, if you keep knocking long enough he will get up and give you everything you want-just because of your persistence. And so it is with prayer-keep on asking and you will keep on getting; keep on knocking and you will keep on finding, knock and the door will be opened. Everyone who asks, receive; all who seek, find; and the door is opened to everyone who knocks." Luke 11:8-10
This does not mean that our Father is unjust or sleepy but that we should be persistent in prayer. Praying aggressively for the doing of God's will & honor of God's name . Keep pounding on heaven's door till the Lord answers. Amen!
I decided to not post last week as I was awaiting answers to my voice mails that I left at various offices. Hands down to Tom's primary office once again! The Office Manager was the only one to return my phone call. They have not had a status update on the PET Scan and she said that she would not be surprised if there was no determination until mid week next week. Tom also tried to do the oxygen test 1 1/2 weeks ago. There is a small machine that hooks a clamp to the tip of your finger and it monitors the levels that Tom is breathing in. Even though Tom taped it heavily to his finger he took it off sometime during the night. When he woke up the next morning he knew that he must have taken it off somehow in his sleep as it couldn't have just fallen off. They are now trying to reschedule getting the machine back to Tom so that he can retake it as they only recorded 2 hours. I do have to add that Tom's Case Manager was on vacation last week. I hope to hear from her no later than Tuesday to get some type of update.
I also appreciated getting advice from an acquaintance about the procedure of Insurance Companies and a few tips about getting results. Tom and I talked about how to go about fighting these denials and that I should be the one to handle these important steps. I do feel better prepared if there should be another denial. I also know that I have the backing of Tom's doctors and their assistance in anything that we need. I am so grateful for the prayer warriors that put forth our various needs before our God. I don't know how we can keep focused without their words of encouragement an knowing that we are not alone. Thank you a million time over!
This leads me to the passage about being persistent in prayer for the things we need. There is a story in Luke that says a friend pounds on a man's door at midnight asking for something to eat and the man does not want to help at this hour. The Bible says: "But I'll tell you this-though he won't do it as a friend, if you keep knocking long enough he will get up and give you everything you want-just because of your persistence. And so it is with prayer-keep on asking and you will keep on getting; keep on knocking and you will keep on finding, knock and the door will be opened. Everyone who asks, receive; all who seek, find; and the door is opened to everyone who knocks." Luke 11:8-10
This does not mean that our Father is unjust or sleepy but that we should be persistent in prayer. Praying aggressively for the doing of God's will & honor of God's name . Keep pounding on heaven's door till the Lord answers. Amen!
Saturday, July 25, 2009
Sobering News
Summer is about half way through & we are trying to enjoy these days before the crazy schedules start again. Tom has been working many hours & my work days seem to fly by.
There have been 3 grievance letters to our insurance company to get Tom back into the test mode. We are back to waiting for the approval. Prayer warriors, this would be my top request at this point in time. Tom continues to have breathing issues & noticed more swelling in his face. This brought about the decision to call his primary doctor. On Friday he went over many things with his doctor. First of all I again have to say how impressed I am with Tom's doc. Tom said he felt a little lost without his Secretary with him to give that last oncologist visits, and such & that was the good news of the day. Doc gave Tom his perspective of Tom's disease:
He first said that every time he sees Tom he believes it is a miracle. He said that after seeing the scans he would not have thought Tom would be in his office today. The swelling that Tom has been having is because he does not have the lymph nodes to reduce the fluids that build up in Tom's face and neck. It pools up while he is laying down & takes most of the day for the swelling to reside. This has been causing his breathing problems, headaches, & lack of sleep which has lead to exhaustion, anxiety & depression. The doctor is going to send Tom to a specialist on August 14 to see if there is anything they can do to reduce his swelling. The doctor is also putting Tom on new/more medication to see if it will help with this. The doctor has ordered an overnight study to see if Tom's oxygen levels are dropping significantly at night. The doctor has also put in a request with the insurance company to see if Tom would qualify for a hospital bed at home. Tom will follow up with the doctor on September 5.
Tom talked about his day to day struggles. Tom was reminded that he doing incredibly well after such a major surgery. They discussed the fact that the cancer is still active and he is by no means cured. Tom needs to focus on what is important right now. The surgery bought him 5 years & if they can stay on top of the cancer he will continue to look at life 5 years at a time.
I told Tom that none of this is shocking to me. I stopped reading all the website information a year ago because it all confirmed this. It has been in the back of my mind for that past 2 years. I try very hard not to take a day for granted (though at times I have greatly failed). So hearing this was once again very sobering and I again thought about how fragile life is. Then verses come to mind. I will share this one:
Psalms 44:5
O God - my God! O my soul, why be so gloomy and discouraged? Trust in God! I shall again praise him for his wondrous help; he will make me smile again, for his is my God!
There have been 3 grievance letters to our insurance company to get Tom back into the test mode. We are back to waiting for the approval. Prayer warriors, this would be my top request at this point in time. Tom continues to have breathing issues & noticed more swelling in his face. This brought about the decision to call his primary doctor. On Friday he went over many things with his doctor. First of all I again have to say how impressed I am with Tom's doc. Tom said he felt a little lost without his Secretary with him to give that last oncologist visits, and such & that was the good news of the day. Doc gave Tom his perspective of Tom's disease:
He first said that every time he sees Tom he believes it is a miracle. He said that after seeing the scans he would not have thought Tom would be in his office today. The swelling that Tom has been having is because he does not have the lymph nodes to reduce the fluids that build up in Tom's face and neck. It pools up while he is laying down & takes most of the day for the swelling to reside. This has been causing his breathing problems, headaches, & lack of sleep which has lead to exhaustion, anxiety & depression. The doctor is going to send Tom to a specialist on August 14 to see if there is anything they can do to reduce his swelling. The doctor is also putting Tom on new/more medication to see if it will help with this. The doctor has ordered an overnight study to see if Tom's oxygen levels are dropping significantly at night. The doctor has also put in a request with the insurance company to see if Tom would qualify for a hospital bed at home. Tom will follow up with the doctor on September 5.
Tom talked about his day to day struggles. Tom was reminded that he doing incredibly well after such a major surgery. They discussed the fact that the cancer is still active and he is by no means cured. Tom needs to focus on what is important right now. The surgery bought him 5 years & if they can stay on top of the cancer he will continue to look at life 5 years at a time.
I told Tom that none of this is shocking to me. I stopped reading all the website information a year ago because it all confirmed this. It has been in the back of my mind for that past 2 years. I try very hard not to take a day for granted (though at times I have greatly failed). So hearing this was once again very sobering and I again thought about how fragile life is. Then verses come to mind. I will share this one:
Psalms 44:5
O God - my God! O my soul, why be so gloomy and discouraged? Trust in God! I shall again praise him for his wondrous help; he will make me smile again, for his is my God!
Tuesday, July 14, 2009
Grievance Letters
What happened to summer? We saw a glimpse of it....I have a slight tan as proof! This week Katie is in the midst of Mega Sports Bible camp and she picked golfing as her sport. It's like Vacation Bible school but with a sports theme. We had 120 kids the first day at the Wayland City Park, how awesome! The boys are just relaxing these days. I do have to say it was very strange to come home one day last week to see Kyle & his cousin come from golf together & his cousin was driving! I know he is a good driver, but am I ready for this?
We are still getting paperwork together for Tom's Grievance. Tom's primary sent his paperwork to our home so that we can fax our grievance with it. The next step is to talk with the Oncologist & see where their office is at in this process. Hopefully all our efforts will pay off & the PET scan will be approved. We also got the results for Tom's blood draw. The new number is 399, up 4 counts since the end of May. I am so glad that his primary doctor is very active in Tom's care. I can't say enough how impressed I am not only with Tom's primary doctor, but with the whole office staff.
On Sunday our Pastor was talking about life & how difficult it can be. It was compared to a Chess match. I agreed when he said that some days we get up and don't feel like we are on the winning side or that we are prepared for the battle. I also like how God is 15 moves ahead of us. The great thing is that we know who the winner is!
We are still getting paperwork together for Tom's Grievance. Tom's primary sent his paperwork to our home so that we can fax our grievance with it. The next step is to talk with the Oncologist & see where their office is at in this process. Hopefully all our efforts will pay off & the PET scan will be approved. We also got the results for Tom's blood draw. The new number is 399, up 4 counts since the end of May. I am so glad that his primary doctor is very active in Tom's care. I can't say enough how impressed I am not only with Tom's primary doctor, but with the whole office staff.
On Sunday our Pastor was talking about life & how difficult it can be. It was compared to a Chess match. I agreed when he said that some days we get up and don't feel like we are on the winning side or that we are prepared for the battle. I also like how God is 15 moves ahead of us. The great thing is that we know who the winner is!
Monday, July 6, 2009
Poked
I hope everyone had a nice 4th. We spent the weekend with friends & family. The weather was not the best, however we had a great time regardless. The kids liked playing in the two different lakes and said that neither lakes were "to cold" to swim in. Tom and I enjoyed watching them from shore on Friday, but when Saturday came around Tom had to get up on ski's. He was very sore by Sunday afternoon!
Tom's oncologist called with an order for Tom to get his blood drawn for the latest report being sent to the insurance company. We have no other information so I would dare say the report still needs to be sent from the doctor's offices. We once again are in the waiting pattern. I hope that the 3rd time is the charm! It has been interesting to hear other people's experiences and perception about the health care system. The sad part is that the consensus is that these approval processes will get worse before the system gets better.
Not too much else to report at this time. We just keep plugging away at the house projects. I keep picking out the stuff and Tom's honey do list just keeps growing longer! Pretty soon all our walls will have color, goodbye primer white!
As we wait I reflect on King Solomon's words, the words of a wise man:
"We can make our plans, but the final outcome is in God's hands. We can always "prove" that we are right, but is the Lord convinced?" Proverbs 16:1-2
Tom's oncologist called with an order for Tom to get his blood drawn for the latest report being sent to the insurance company. We have no other information so I would dare say the report still needs to be sent from the doctor's offices. We once again are in the waiting pattern. I hope that the 3rd time is the charm! It has been interesting to hear other people's experiences and perception about the health care system. The sad part is that the consensus is that these approval processes will get worse before the system gets better.
Not too much else to report at this time. We just keep plugging away at the house projects. I keep picking out the stuff and Tom's honey do list just keeps growing longer! Pretty soon all our walls will have color, goodbye primer white!
As we wait I reflect on King Solomon's words, the words of a wise man:
"We can make our plans, but the final outcome is in God's hands. We can always "prove" that we are right, but is the Lord convinced?" Proverbs 16:1-2
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