The 4th of July celebration was very busy. We were able to spend time with many families. It was hard getting back into the swing of work on Tuesday.
Tom has been on the XL-184 drug for a little over a week now. He has been very good about fasting before and after the 10:00 am hour of taking the pill. The first couple of days he had a feeling of nausea and was wondering if it was just in his head. He is now experiencing more severe side effects. We can only assume that this means he is on the drug and not the placebo. He did have to call Henry Ford today to discuss the side effects. If they continue to worsen they will put him on some pain medication. Tom received the Calcitonin results today. He is higher than ever with the new count at 1306. It will be interesting to see if the count will go down. In reading up on this drug, this will be monitored closely with the physicians.
Tom will be going back to Detroit on July 14 for another check up. I am able to accompany him this time and will be able to see the "other" hospital where he spends his days away. I can't imagine him doing all this and trying to work at the same time. The days of him feeling guilty about not working have come to an abrupt end.
Thank you to everyone who has given us kind words of encouragement & help once again. To my friend with the gift card, I will certainly enjoy a latte next week and "try" to relax anyway! I don't know how I would get through all this without my support so that I can focus on supporting my husband.
"Be glad for all God is planning for you. Be patient in trouble, and prayerful always" Romans 12:12
Thursday, July 8, 2010
Tuesday, June 29, 2010
Treatment
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
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
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."
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