Tom & his mother were out the door this morning at 7:00 am. He returned home tonight at 8:30 pm. He looks tired and I know that he has had a long day. I am hearing about his day as I am typing....
The first thing Tom did was met with Dr. Ali. They went over all his scans from last week. The bone scan showed the spot on his spine that we saw previously. It also show a possible spot on his left femur. They will continue to monitor these spot with future bone scans. The MRI and CT scans continue to show 6 lesions in his liver. They also noted spots in his lungs and an area in his neck along side his carotid artery, his left side.
Tom started the drug program. Tom went through 6 hours of blood draws, testing, and EKG's. He had a total of 10 EKG's before he was able to leave.
Obviously the side effects of this drug can be severe. They will be monitoring Tom very closely over the next 60 days. The scans results were not what we wanted to hear, as it confirms once again the cancer continues to spread. As Tom starts this new treatment he also find himself in the unfamiliar territory of concentrating on his own health. Tom's doctors have placed him on Short Term Disability as of today. This will give Tom the opportunity to focus on his health both mentally and physically as he begins this next stage of his journey.
I am the Lord your God, who holds your right hand, and I tell you, "Don't be afraid. I will help you." Isaiah 41:31 ncs
Tuesday, June 29, 2010
Wednesday, June 23, 2010
Changes in a Day
Things can change in a day. This morning Tom received a phone call from Henry Ford Hospital. Dr. Ali now wants Tom to start the program right away. He will be heading to HFH in Detroit on Tuesday morning. So, is this good that the doctor wants to get Tom in right away or something he saw on the scans that moved up the appointment? Tom stated that is what is playing through his head all day.
Please pray that Tom will have a safe trip & that he is encouraged by the treatment.
Please pray that Tom will have a safe trip & that he is encouraged by the treatment.
Tuesday, June 22, 2010
We're Back
I have to say that I am sorry that my last post did not contain all the information as I missed blogging about the Friday test. The Henry Ford Hospital is moving fast and Tom was actually in Detroit on Friday, June 19 for a Bone scan. He spent the whole weekend in West Bloomfield Hills. He spent Friday with his friend Chris, they were able to catch a Tigers game. On Saturday I drove there to meet him for the rest of his trip. Sunday Tom had an extensive MRI and Monday was his CT scan. We finally made it home around 8:30 Monday night. We are both still recovering from the trip.
Today Tom received a phone call from HFH stating that he is eligible to enter into the program. I am not sure if we should be ecstatic about it considering Tom has to be at certain degree of of the illness in order to qualify. However, you have to be "cancer excluded" otherwise healthy in order to qualify. I do believe that it is a good thing that Tom has been accepted. Tom will start his treatment on Tuesday, July 6. The first 2 months will be the hardest as Tom will be at HFH in both West Bloomfield and Detroit quite a bit. We will know more details after his visit on the 6th.
When Tom goes on the 6th they will go over the results of all the scans. He will be monitored very closely with this program as they do not know how he will react.
We are not sure how this will effect Tom's work schedule. He optimistic that he will be able to continue working through this process. However, doctors are warning him that he may need to slow down for a little while. Knowing Tom, that means he will cut back to only working one job. Luckily we work for a good company that is prepared to help us along the way.
All through this we need to keep on praying, and praying, and praying. The Lord has lead us through so much. I talk with people and can't think of how else we could have made it. I thank all my prayer warriors. Thanking God for you.
"But you, dear friends, must build up your lives ever more strongly upon the foundation of our holy faith, learning to praying the power and strength of the Holy Spirit." Jude 1:20
Today Tom received a phone call from HFH stating that he is eligible to enter into the program. I am not sure if we should be ecstatic about it considering Tom has to be at certain degree of of the illness in order to qualify. However, you have to be "cancer excluded" otherwise healthy in order to qualify. I do believe that it is a good thing that Tom has been accepted. Tom will start his treatment on Tuesday, July 6. The first 2 months will be the hardest as Tom will be at HFH in both West Bloomfield and Detroit quite a bit. We will know more details after his visit on the 6th.
When Tom goes on the 6th they will go over the results of all the scans. He will be monitored very closely with this program as they do not know how he will react.
We are not sure how this will effect Tom's work schedule. He optimistic that he will be able to continue working through this process. However, doctors are warning him that he may need to slow down for a little while. Knowing Tom, that means he will cut back to only working one job. Luckily we work for a good company that is prepared to help us along the way.
All through this we need to keep on praying, and praying, and praying. The Lord has lead us through so much. I talk with people and can't think of how else we could have made it. I thank all my prayer warriors. Thanking God for you.
"But you, dear friends, must build up your lives ever more strongly upon the foundation of our holy faith, learning to praying the power and strength of the Holy Spirit." Jude 1:20
Thursday, June 3, 2010
Dtown
The summer weather has definitely shown its face here in Michigan. The kids are outside a little more and the sun is with us until bedtime. When I get up at 5:15 to workout in the morning, I can see the puppies without having to turn on the back light. The days are heating up and I am loving it. With school about to end all I can think is "Come on Summer Fun!"
Tom had his appointment with the Oral Surgeon last week. The doctor did not see any reason for concern. He told Tom that if there was cancer it would be on a major nerve and Tom would have no doubt about the pain it would cause. They took another x-ray which showed that the spot had actually decreased in size. They will continue to monitor it during his routine visits for now.
Tom made his way to Detroit on Tuesday for his visit with Henry Ford Hospital. He was satisfied with his consultation with Dr. Ali. The doctor spent time with Tom explaining how the program worked & what would happen if Tom was to be approved. This drug is a Phase 3 drug that is ready to go to the FDA. This program does have a placebo. However, the chance of getting the water pill is a very small percent. The care that Tom would receive at worst case scenario would be not much different than the standard care for Tom's type of cancer. However, Tom has the advantage of being watched closer because of the research. Everything would have to be done at their hospital as all patients are to be scanned with the same machine. Tom had 3 EKG's and blood work up before he left. The insurance approved the consultation and test that was done on Tuesday. The next step is for them to approve the clinical trial.
Tom needs to go back on June 20 & 21st for more test. On Sunday he will have an MRI and on Monday a CT scan. Because both of these tests have contrast dye, he is not able to do the scans on the same day. He will also need a bone scan before starting the trial.
Tom is working several extra shifts at both the Hospital and EMS this month as he fears that he may be back on Disability in July.
Psalms 138:8 "The Lord will work out his plans for my life-for your lovingkindness, Lord, continues forever. Don't abandon me-for you made me."
Tom had his appointment with the Oral Surgeon last week. The doctor did not see any reason for concern. He told Tom that if there was cancer it would be on a major nerve and Tom would have no doubt about the pain it would cause. They took another x-ray which showed that the spot had actually decreased in size. They will continue to monitor it during his routine visits for now.
Tom made his way to Detroit on Tuesday for his visit with Henry Ford Hospital. He was satisfied with his consultation with Dr. Ali. The doctor spent time with Tom explaining how the program worked & what would happen if Tom was to be approved. This drug is a Phase 3 drug that is ready to go to the FDA. This program does have a placebo. However, the chance of getting the water pill is a very small percent. The care that Tom would receive at worst case scenario would be not much different than the standard care for Tom's type of cancer. However, Tom has the advantage of being watched closer because of the research. Everything would have to be done at their hospital as all patients are to be scanned with the same machine. Tom had 3 EKG's and blood work up before he left. The insurance approved the consultation and test that was done on Tuesday. The next step is for them to approve the clinical trial.
Tom needs to go back on June 20 & 21st for more test. On Sunday he will have an MRI and on Monday a CT scan. Because both of these tests have contrast dye, he is not able to do the scans on the same day. He will also need a bone scan before starting the trial.
Tom is working several extra shifts at both the Hospital and EMS this month as he fears that he may be back on Disability in July.
Psalms 138:8 "The Lord will work out his plans for my life-for your lovingkindness, Lord, continues forever. Don't abandon me-for you made me."
Monday, May 24, 2010
Checking it out
Whew! What a weekend. We had our first event for Relay for Life. The Euchre tournament was a success and we raised over $1,500.00! Way to go team! Tom's organizational skills came through again and he totally exhausted all his efforts for this event. Sunday he was feeling the effects of it.
Now that we can take a breath, Tom needs to focus on his own health care. He has had multiple conversation with insurance, primary doctor, and Henry Ford Hospital. There are advantages/disadvantages to both of the clinical trials that Tom has been considering. I will say again that his PCP did not hesitate to spend countless hours talking to other Cancer centers around the USA and sharing with us what he found. HFH is out of network so we are not sure how this will play out with our insurance. We are again in the stage of many questions and waiting for answers.
Last week Tom had his routine dental check up. They brought Tom a set of x-rays and sent him to see an Oral Surgeon because they found a "spot" that is of concern. It is believed that this is not an abscess as they first thought and because of Tom's history; they are asking Tom to get another opinion. Tom has a meeting with the surgeon Thursday morning.
This leads us to the question of "Where is the best place for Tom's care?" that we keep asking ourselves. Tom is feeling a little frustration and would prefer to be at one place and stay there. Today we found out that even if we get the ball rolling with HFH it will be about a month before the treatment starts. So are we on the same schedule as if we stay with Karmanos? I told Tom that it doesn't hurt to check it out and to find out about options since either way we have to wait.
Please pray for Tom. He is feeling a little out of sorts without an Oncologist. He is frustrated that things are not moving faster. This decision is weighing on his mind. I pray that God will give us a clear direction and that we continue walk along the path we have been set upon and that we do not get caught up in those things we can't control. I pray that anger and the feeling of it being unfair does not have a foothold in either of our lives.
Ephesians 5:21-22 "Now your attitudes and thoughts must all be constantly changing for the better. Yes, you must be a new and different person, holy and good. Clothe yourself with this new nature."
Now that we can take a breath, Tom needs to focus on his own health care. He has had multiple conversation with insurance, primary doctor, and Henry Ford Hospital. There are advantages/disadvantages to both of the clinical trials that Tom has been considering. I will say again that his PCP did not hesitate to spend countless hours talking to other Cancer centers around the USA and sharing with us what he found. HFH is out of network so we are not sure how this will play out with our insurance. We are again in the stage of many questions and waiting for answers.
Last week Tom had his routine dental check up. They brought Tom a set of x-rays and sent him to see an Oral Surgeon because they found a "spot" that is of concern. It is believed that this is not an abscess as they first thought and because of Tom's history; they are asking Tom to get another opinion. Tom has a meeting with the surgeon Thursday morning.
This leads us to the question of "Where is the best place for Tom's care?" that we keep asking ourselves. Tom is feeling a little frustration and would prefer to be at one place and stay there. Today we found out that even if we get the ball rolling with HFH it will be about a month before the treatment starts. So are we on the same schedule as if we stay with Karmanos? I told Tom that it doesn't hurt to check it out and to find out about options since either way we have to wait.
Please pray for Tom. He is feeling a little out of sorts without an Oncologist. He is frustrated that things are not moving faster. This decision is weighing on his mind. I pray that God will give us a clear direction and that we continue walk along the path we have been set upon and that we do not get caught up in those things we can't control. I pray that anger and the feeling of it being unfair does not have a foothold in either of our lives.
Ephesians 5:21-22 "Now your attitudes and thoughts must all be constantly changing for the better. Yes, you must be a new and different person, holy and good. Clothe yourself with this new nature."
Sunday, May 9, 2010
Undecided
What to do?! I made a phone call to Karmanos Cancer Center this week. I was told that it will be the middle of June before I should call back. This is not a definite opening just that it will be at a stand still until that time frame. I asked about the blood work and CT's and the reply was that there is no need for those unless a there is a change in Tom's status. The phone call ended and I felt very frustrated once again!
I should however, take you back to the week before. I was talking with Tom's primary office and was told that they had not received anything from Karmanos. Once they did get the information Dr. Divic called Tom on a Thursday evening to tell Tom that his Calcitonin level dropped 300. He is in the 700 range. Dr. Divic said that he was not sure what this meant, but wanted to share this as good news.
So, today our options now are either to wait out this clinic trial opening or to return to U of M to start their regiment. Tom and I have discussed this past week which is the better option. We are uncertain which is the better path. It feels once again as if there 2 distinctly different paths and we are standing at the Y of the road. I am going to make a few more calls this upcoming week and confirm that Tom will either need to choose and can't flop between. I also will seek out from his primary, if I can, a professional opinion of which way we should go.
I wanted to share this with you so that we could once again pray for direction. Thank you to our prayer warriors that have not ceased prayers for our family. I was reminded again this week about praying without ceasing and that we give up to easily. Let us be assured that our God is in control.
Psalms 119:105 "Your words are a flashlight to light the path ahead of me, and keep me from stumbling."
I should however, take you back to the week before. I was talking with Tom's primary office and was told that they had not received anything from Karmanos. Once they did get the information Dr. Divic called Tom on a Thursday evening to tell Tom that his Calcitonin level dropped 300. He is in the 700 range. Dr. Divic said that he was not sure what this meant, but wanted to share this as good news.
So, today our options now are either to wait out this clinic trial opening or to return to U of M to start their regiment. Tom and I have discussed this past week which is the better option. We are uncertain which is the better path. It feels once again as if there 2 distinctly different paths and we are standing at the Y of the road. I am going to make a few more calls this upcoming week and confirm that Tom will either need to choose and can't flop between. I also will seek out from his primary, if I can, a professional opinion of which way we should go.
I wanted to share this with you so that we could once again pray for direction. Thank you to our prayer warriors that have not ceased prayers for our family. I was reminded again this week about praying without ceasing and that we give up to easily. Let us be assured that our God is in control.
Psalms 119:105 "Your words are a flashlight to light the path ahead of me, and keep me from stumbling."
Sunday, April 18, 2010
May or May not
We are reminded that we live in Michigan. One day it is a perfect sunny, Michigan summer day, and then we are back to the Spring type weather. I love this time of year where we get a taste of the beautiful weather to come! The kids are doing well and I am counting down my couple of classes left.
This week I talked with Tom's Primary Doctor's office. They have not received any notification from Karmanos. I told them of Tom's situation and how he has not been able to start the trial as of yet. I then called Karmanos to ensure that Tom's reports are forwarded to his PCP. We talked about the trial and that it will still be a few weeks before the trial is opened up. It was explained to me that the Committees get together and have to approve the process before it goes forward. Once they get this through the number of committees it opens up and goes rather quickly. It will probably be May before Tom knows any dates as of the start of this clinical trial. I had to chuckle on Friday when Tom lovingly accused me of not being able to stay out of his care and then said a heartfelt "Thank you".
Tom has kept himself, and others, busy with the Relay for Life event. I believe it has been good for Tom to have another focus at this time. The Euchre tournament will be upon us before we know it and Tom has been at the forefront of this fundraiser. I know that he has poured his heart and soul into this. I also have to mention how proud I am of our little girl. Katie's best friend's mother had been diagnosed with cancer last October. These two girls walked around our neighborhood collecting for cancer. Together they raised $189.00! Wow, that is amazing.
I once again will finish with something that touches my heart. I know that life has its ups and downs. There is no guarantee that it will be prosperous, full of fun, or pain free. I also know that times are hard but God is good. There is a reason why our family is here today and sharing with you our experiences. I hope this encourages you let those you love "know it"!
1 John 3:11 "for the message to us from the beginning has been that we should love one another."
This week I talked with Tom's Primary Doctor's office. They have not received any notification from Karmanos. I told them of Tom's situation and how he has not been able to start the trial as of yet. I then called Karmanos to ensure that Tom's reports are forwarded to his PCP. We talked about the trial and that it will still be a few weeks before the trial is opened up. It was explained to me that the Committees get together and have to approve the process before it goes forward. Once they get this through the number of committees it opens up and goes rather quickly. It will probably be May before Tom knows any dates as of the start of this clinical trial. I had to chuckle on Friday when Tom lovingly accused me of not being able to stay out of his care and then said a heartfelt "Thank you".
Tom has kept himself, and others, busy with the Relay for Life event. I believe it has been good for Tom to have another focus at this time. The Euchre tournament will be upon us before we know it and Tom has been at the forefront of this fundraiser. I know that he has poured his heart and soul into this. I also have to mention how proud I am of our little girl. Katie's best friend's mother had been diagnosed with cancer last October. These two girls walked around our neighborhood collecting for cancer. Together they raised $189.00! Wow, that is amazing.
I once again will finish with something that touches my heart. I know that life has its ups and downs. There is no guarantee that it will be prosperous, full of fun, or pain free. I also know that times are hard but God is good. There is a reason why our family is here today and sharing with you our experiences. I hope this encourages you let those you love "know it"!
1 John 3:11 "for the message to us from the beginning has been that we should love one another."
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