On Sunday Tom and I headed back to West Bloomfield for his intensive MRI scan. It was another pretty drive and the traffic was not too heavy for a Sunday. The MRI took about an hour. During the last scan Tom could not hold in his cough and they had to repeat the 5 minute scan. I feel so bad with Tom's neck surgery, he has a hard time with speaking, swallowing, no coughing ordeals.
Today Tom received a phone call from Dr. Ali stating that the MRI scans showed the cancer has metastasized to the C6-C7 vertebrae. Tom is off the drug and will need to go back in August to exit the study. Dr. Ali did say that he would like to go before the board and to confirm that he will be removed from the trial. He did talk about putting Tom on the Vandetanib or another drug that can be prescribed to MTC patients.
Tom is probably going to take another approach; he is planning to call his primary doctor and get a referral back to Dr. Worden at the U of M. After a couple visits to Ann Arbor he can possibly move his care to one of Dr. Worden's colleagues in Grand Rapids. We have talked about this option since our January visit with Dr. Worden; a Plan B of sorts.
While the XL-184 was not perfect, it did give us two more years together. I am asking my prayer warriors to please keep us in mind. Tom does very well in these circumstances, and I just tend to fret and become the grumpy caretaker (as he calls me). We need a clear plan as to Tom' treatment and hope that he will have a better quality of life.
1 Peter 4:12 "Dear friends, don't be bewildered or surprised when you go through the fiery trials ahead, for this is not strange, unusual thing that is going to happen to you."
Monday, July 30, 2012
Tuesday, July 24, 2012
Scan, Scans, Scans & More Scans
Tom, Katie, and I headed back to Detroit this month for Tom's scans & results. This has been a very trying month for Tom physically. He has been trying to eat better than before and attempting to be up & moving with 3 active kids, getting his backyard around, and keep pushing himself everyday to be moving. The record heat has really pushed Tom's limits also. He is fatigued and....grumpy! We had many discussions about Tom needing a break from the drug. I of course kept telling him he needed to stay on the drug and poo poohing his need to take a breather. To tell the truth I'm afraid that if he goes off and feels better, he'll chose not to go back on.
Sunday Tom had his first scan and off to the Tigers we went. What a game! It was a great game and we enjoyed watching them win. It was hard on Tom to sit in the sun and heat but he didn't want to miss a minute. Monday was his other scans and he was in good spirits when we got back to the Guest house. He seems to react better to some contrasts than others.
Tuesday we headed to our meeting with Dr. Ali to get the results. His Clinical Manager talked with Tom about the possibility of reducing his dosage as he is having a hard time this past month. She said he is currently the only one on the study taking such a high dose of drug. Dr. Ali said that Tom's Bone scan came in stable. He stated that the CT scan is showing that the lesions in his liver & pancreas are stable. He was concerned with the change in the vertebrae (c6 & c7). This could be progression of the disease, but it could also be other causes. There needs to be another scan to take a closer look at this area. At this point he took Tom off the drug for 30 days. However, we know that if there is evidence of the cancer metastasizing again, Tom will be removed from the trial and we will be looking for other options.
When we got home tonight we received the call from the hospital for his MRI scan. On Sunday we will be heading back to Detroit for the day. Tom remains in good spirits joking about getting to enjoy a burrito and a cold beer this month. He was actually happy to hear the news of the break & smiled when the doctor first told us. I on the other hand sink into a quiet and gloomy state (being a good caretaker I am not). These realities hit harder than I am able to admit. I talk about having Tom here years longer than I believed was possible and that I understand how precious life is. It's another to remember that the odds are against him & to live with the fact that I selfishly want and expect many more. On the drive home I kept telling myself to lighten up, I know who is in control and what good does worrying do; so instead I prayed for the results and that we are prepared for the next steps in His plan. Lord help us through the next 30 days.
Proverbs 20:24 "Since the Lord is directing out steps, why try to understand everything that happens along the way?"
Sunday Tom had his first scan and off to the Tigers we went. What a game! It was a great game and we enjoyed watching them win. It was hard on Tom to sit in the sun and heat but he didn't want to miss a minute. Monday was his other scans and he was in good spirits when we got back to the Guest house. He seems to react better to some contrasts than others.
Tuesday we headed to our meeting with Dr. Ali to get the results. His Clinical Manager talked with Tom about the possibility of reducing his dosage as he is having a hard time this past month. She said he is currently the only one on the study taking such a high dose of drug. Dr. Ali said that Tom's Bone scan came in stable. He stated that the CT scan is showing that the lesions in his liver & pancreas are stable. He was concerned with the change in the vertebrae (c6 & c7). This could be progression of the disease, but it could also be other causes. There needs to be another scan to take a closer look at this area. At this point he took Tom off the drug for 30 days. However, we know that if there is evidence of the cancer metastasizing again, Tom will be removed from the trial and we will be looking for other options.
When we got home tonight we received the call from the hospital for his MRI scan. On Sunday we will be heading back to Detroit for the day. Tom remains in good spirits joking about getting to enjoy a burrito and a cold beer this month. He was actually happy to hear the news of the break & smiled when the doctor first told us. I on the other hand sink into a quiet and gloomy state (being a good caretaker I am not). These realities hit harder than I am able to admit. I talk about having Tom here years longer than I believed was possible and that I understand how precious life is. It's another to remember that the odds are against him & to live with the fact that I selfishly want and expect many more. On the drive home I kept telling myself to lighten up, I know who is in control and what good does worrying do; so instead I prayed for the results and that we are prepared for the next steps in His plan. Lord help us through the next 30 days.
Proverbs 20:24 "Since the Lord is directing out steps, why try to understand everything that happens along the way?"
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