Tom received a phone call from the nurse at U of M with his latest test results. As he suspected, they are adjusting his Thyroid medicine again (I heard this can go on for 6 months and up to a year). Hopefully this will help his energy level as he starts back to work this week. We were not thrilled with the results of the Calcitonin levels. We had hoped that after radiation his levels would return to normal (normal being around 10). A higher calcitonin level is an indicator that there is still cancer. Before Tom's surgery his was at 11,000. One week after the surgery his level had dropped to 187. His latest level was 129. His Dr. said that we are not going to worry about it now because it is still dropping and not going up. The real question will be answered in March when he goes for the scan.
For now Tom is jumping back into work and physical therapy trying to keep his mind off odds, percentages, and the March scan. The kids don't know that dad has to go back for more procedures yet. I'm just relying a lot on prayers to help us all through.
Friday, January 25, 2008
Tuesday, January 22, 2008
Back to Ann Arbor
More tests? Aren't we done yet?
We had a horrible ride to U of M today. We were stuck in traffic in Kzoo for over 1/2 hour with traffic backed up as far as the eye can see. Tom was a great driver and we were only 10 minutes late for the appointment. They must have been waiting for us because Tom got right in to see Dr. Teknos, which was a first! Tom was poked & prodded and then we got to the consult.
Tom's neck continues to swell in the evening and Dr. says this is normal. He warned that his swelling and firmness may stay with him for up to a year. The edema (fluid) in Tom's neck it's turning to scar tissue. Tom will need to start Physical Therapy. He still does not have full movement of his neck and Dr. doesn't want scar tissue to hamper the movement of his head and neck. Dr. also explained that three weeks after the last radiation treatment would be the worst point in recovery before Tom would begin feeling better. Tom is on the other side of it now and should start improving a little each day.
Tom's taste buds should come back within 3-4 months after his last treatment. Dr. said that "Things will start tasting better again and not so much like cardboard." His energy is within the same range. He said that each week he should notice a difference.
Tom got poked again today while at the U of M. They are checking his Calcitonin levels, Thyroid, and calcuim levels. These results will be in within the week. Tom will not have to see another Dr. again until March. He will go back to U of M for a three day procedure. This is called for a scan called the Octreotide scan. This is better than a PET scan because it focuses on Neuro Tumors. This is in the nuclear medicine department at the University of Michigan with the same functions as the PET scan. Then we go back again to get the results on April 1st -no fooling!
Thanks for all the prayers that were said today and before in anticipation of Tom's consultation. Tom is thankful that he has been released to go back to work next week. He is still not sleeping all night but within time this should be improving along with everything else. Even though we are not out of the "woods" yet, we are getting more answers and having less questions. Is Tom cancer free? The Dr. have not confirmed that, yet but I believe we can pray for that.
We had a horrible ride to U of M today. We were stuck in traffic in Kzoo for over 1/2 hour with traffic backed up as far as the eye can see. Tom was a great driver and we were only 10 minutes late for the appointment. They must have been waiting for us because Tom got right in to see Dr. Teknos, which was a first! Tom was poked & prodded and then we got to the consult.
Tom's neck continues to swell in the evening and Dr. says this is normal. He warned that his swelling and firmness may stay with him for up to a year. The edema (fluid) in Tom's neck it's turning to scar tissue. Tom will need to start Physical Therapy. He still does not have full movement of his neck and Dr. doesn't want scar tissue to hamper the movement of his head and neck. Dr. also explained that three weeks after the last radiation treatment would be the worst point in recovery before Tom would begin feeling better. Tom is on the other side of it now and should start improving a little each day.
Tom's taste buds should come back within 3-4 months after his last treatment. Dr. said that "Things will start tasting better again and not so much like cardboard." His energy is within the same range. He said that each week he should notice a difference.
Tom got poked again today while at the U of M. They are checking his Calcitonin levels, Thyroid, and calcuim levels. These results will be in within the week. Tom will not have to see another Dr. again until March. He will go back to U of M for a three day procedure. This is called for a scan called the Octreotide scan. This is better than a PET scan because it focuses on Neuro Tumors. This is in the nuclear medicine department at the University of Michigan with the same functions as the PET scan. Then we go back again to get the results on April 1st -no fooling!
Thanks for all the prayers that were said today and before in anticipation of Tom's consultation. Tom is thankful that he has been released to go back to work next week. He is still not sleeping all night but within time this should be improving along with everything else. Even though we are not out of the "woods" yet, we are getting more answers and having less questions. Is Tom cancer free? The Dr. have not confirmed that, yet but I believe we can pray for that.
Friday, January 4, 2008
Happy New Year
Tom, along with our calenders has turned another year older! He was looking forward to turning the page and doesn't mind saying so. It also lifted his spirits with the Michigan victory on January 1st. What a tribute to the retiring Lloyd Carr. I'm sure our Ohio friends could hear our house cheering!? Now it's back to school, work, and the long winter days. Just like the slightly longer amount of daylight, Tom is getting a little stronger each day, but he still tires easily as he works on small house projects. I can tell that his strength is not what it was a few months ago. It's amazing to me that 3 months ago he was so sick and tired of being sick before his surgery. I remembered thinking "if we could just get through the surgery" but that was only a small piece of his recovery process. I know that he is not the last to fight this type of disease, but I sure wish that nobody else would have to go through this difficult recovery. However, we both have a new respect for others that suffer with many type of illnesses. It is so reassuring when talking with other couples that have been/are going through a similar types of situation that what we feel, think, and focus on are normal for our life at this point and time. Thanks to all of you once again for your support. I don't think that I can say it enough times to truly say how much you have touched our hearts. I think doing this blog has helped many of you see a part of our family as much as it has been cheep therapy for myself personally.
As we look forward to what 2008 has to bring, I hope that it brings health and happiness to all. We are looking ahead to small things such as when we will get the boat out, what improvements to work on, and what family movie we will watch next. Tom is looking forward to the next PET scan that shows no cancer. The kids will say they are looking forward to the next break from school. I hope that we can go back to life as normal. OK not the old normal but a new and appreciated normal. I hope that 2008 brings you all that you've wished for.
As we look forward to what 2008 has to bring, I hope that it brings health and happiness to all. We are looking ahead to small things such as when we will get the boat out, what improvements to work on, and what family movie we will watch next. Tom is looking forward to the next PET scan that shows no cancer. The kids will say they are looking forward to the next break from school. I hope that we can go back to life as normal. OK not the old normal but a new and appreciated normal. I hope that 2008 brings you all that you've wished for.
Saturday, December 29, 2007
Better?
I hope that everyone had a blessed Christmas. Our family was busy with all the family parties, food, and unwrapping of presents. This year we gave a "live" present to Cody. He loves his little rat and Kyle ended up buying one for his room as well. If either the dog or cat would've gotten them, they would have thought it was a grand Christmas as well! Hopefully this will not happen as we welcome Sara and Hannah to our home. They are soft and I have petted them each once, but I don't think they will be crawling on me anytime soon.
On Christmas day I noticed that Tom was talking above a horse whisper. The day after he said that he slept almost through the night. A few nights this week he did not take his cough medicine before bed. I think we are slowly turning the corner to a healthier Tom. On Thursday, December 27 Tom had a follow up appointment with Dr. Buth who said that Tom's skin was healing nicely. Tom will have hair growth again at the base of his neck, but Tom was told that he will probably never have to shave more than he is doing currently, so much for the electric shaver I bought him! Dr. Buth also said that if they do the PET scan too early it will give a false positive due to the radiation. Dr. Buth will contact U of M to see where the scan needs to be done and Tom said he prefers to do it in Grand Rapids. We still do not have a date set for the scan, but Dr. Buth thinks it will be set up for sometime in March or April. Dr. Buth is also referring Tom back to Dr. Campbell, Oncology, for a further consultation and a discussion about chemotherapy. I do not think that Tom will have chemo otherwise it would have been in the post op plans back in August. I am grateful that these Dr.'s are not taking anything for granted and Tom will go to 100 consultations (my opinion of course) until the group of Dr's are satisfied that Tom is cancer free. Tom, on the other hand is littlerly "sick" of Dr's and wants the whole ordeal over yesterday! His energy level has not yet increased and his right shoulder is numb. He gets jolts every once in a while on his right side, especially when touched in that area. I appreciate that so many of you are praying for Tom. Thanks for the wonderful Christmas cards. Your well wishes and generosity has been overwhelming to Tom and myself. Have a safe and happy new year!
On Christmas day I noticed that Tom was talking above a horse whisper. The day after he said that he slept almost through the night. A few nights this week he did not take his cough medicine before bed. I think we are slowly turning the corner to a healthier Tom. On Thursday, December 27 Tom had a follow up appointment with Dr. Buth who said that Tom's skin was healing nicely. Tom will have hair growth again at the base of his neck, but Tom was told that he will probably never have to shave more than he is doing currently, so much for the electric shaver I bought him! Dr. Buth also said that if they do the PET scan too early it will give a false positive due to the radiation. Dr. Buth will contact U of M to see where the scan needs to be done and Tom said he prefers to do it in Grand Rapids. We still do not have a date set for the scan, but Dr. Buth thinks it will be set up for sometime in March or April. Dr. Buth is also referring Tom back to Dr. Campbell, Oncology, for a further consultation and a discussion about chemotherapy. I do not think that Tom will have chemo otherwise it would have been in the post op plans back in August. I am grateful that these Dr.'s are not taking anything for granted and Tom will go to 100 consultations (my opinion of course) until the group of Dr's are satisfied that Tom is cancer free. Tom, on the other hand is littlerly "sick" of Dr's and wants the whole ordeal over yesterday! His energy level has not yet increased and his right shoulder is numb. He gets jolts every once in a while on his right side, especially when touched in that area. I appreciate that so many of you are praying for Tom. Thanks for the wonderful Christmas cards. Your well wishes and generosity has been overwhelming to Tom and myself. Have a safe and happy new year!
Monday, December 24, 2007
Merry Christmas
It's always so busy this time of the year, but I thought it was important to acknowledge this wonderful holiday. We have already had a few parties under our belt these last few weekends and have enjoyed all of them. It's Christmas Eve and Katie will be singing in the choir tonight which brings back some of my family to our hometown. The boys are not so excited to go to church again truthfully since "We were just there yesterday". However, I hope they get the meaning of what Christmas is and who this holiday is for. Unlike the commericals, it's not all about "me".
Tom has not improved much in the last (almost) week. His breathing issues and coughing are persistent. He tires easily and that frustrates him. Tom is really starting to peal. It looks very painful and some of the new skin on his right side looks raw as though it were not ready yet to come off. I can't scratch him long enough or hard enough to make that itchy feeling go away. I worry I will do more damage than good when I sink my claws in. As Tom starts feeling better he will have a hard time waiting to go back to U of M to get his exam at the end of January. I know we are both looking to turn the page to a New Year.
As I look back at 2007 and see the roller coaster ride we've been on I think about so many things. I am grateful that Tom has pulled through and done so well under the circumstances. I look at my family and see how blessed we are and how precious our children are to both of us. I see our extended family and thank God for their support. I think of our friends and don't know how we could ever repay what they've done and realize how much they are an extension of "family". I think about our church and know that many of our "faith family" have upheld us in their prayers daily. I also think about the people we work with and how they have helped us. We have heard from people that we do not often communicate with some we have lost touch with. So even though this year has held many challenges for us physically, mentally, and emotionally I just wanted you to know that I thank God for you.
Tom has not improved much in the last (almost) week. His breathing issues and coughing are persistent. He tires easily and that frustrates him. Tom is really starting to peal. It looks very painful and some of the new skin on his right side looks raw as though it were not ready yet to come off. I can't scratch him long enough or hard enough to make that itchy feeling go away. I worry I will do more damage than good when I sink my claws in. As Tom starts feeling better he will have a hard time waiting to go back to U of M to get his exam at the end of January. I know we are both looking to turn the page to a New Year.
As I look back at 2007 and see the roller coaster ride we've been on I think about so many things. I am grateful that Tom has pulled through and done so well under the circumstances. I look at my family and see how blessed we are and how precious our children are to both of us. I see our extended family and thank God for their support. I think of our friends and don't know how we could ever repay what they've done and realize how much they are an extension of "family". I think about our church and know that many of our "faith family" have upheld us in their prayers daily. I also think about the people we work with and how they have helped us. We have heard from people that we do not often communicate with some we have lost touch with. So even though this year has held many challenges for us physically, mentally, and emotionally I just wanted you to know that I thank God for you.
Wednesday, December 19, 2007
Wrapping up Christmas
Tomorrow, Thursday, December 20 we are going to try and finish the Christmas shopping. The kids are already looking at the presents we have under the tree, trying to find one with their name on it. School Christmas parties for the kids are Friday and they are ready for the break from their routine. We all are looking forward to the family Christmas parties as well.
I have had many questions about how Tom is doing. There are nights that his breathing is more like a plan old snore; other nights his breathing still sounds labored. He is still waking up with his coughing fits a few times a night. He brings his Michigan blanket to bed with him many nights, much unlike in the years past where I am covered under all the blankets including the ones he kicks off and he always had the fan on. I think he is finally over all the flu symptoms which has been a long recovery road for him. Tom is still on one solid meal a day, which many times consists of cereal or soup. We are not sure what type of scans Tom will have whether it will be the CAT or PET. Also, I am wondering what his blood test will show in accordance with his calcitonin level. Tom thinks he wants to get back to work, but I am not sure his physical and mental capacities are in conjunction with each other. I keep telling him in each phase, "This to will pass" and not to push himself too hard. Thanks again for the support and encouraging words. It still amazes me how many people are reading this blog, friends and families of friends. Thanks for walking this path with us as we could not handle this by ourselves. Your prayers have kept us positive and your encouragement gives us hope.
I have had many questions about how Tom is doing. There are nights that his breathing is more like a plan old snore; other nights his breathing still sounds labored. He is still waking up with his coughing fits a few times a night. He brings his Michigan blanket to bed with him many nights, much unlike in the years past where I am covered under all the blankets including the ones he kicks off and he always had the fan on. I think he is finally over all the flu symptoms which has been a long recovery road for him. Tom is still on one solid meal a day, which many times consists of cereal or soup. We are not sure what type of scans Tom will have whether it will be the CAT or PET. Also, I am wondering what his blood test will show in accordance with his calcitonin level. Tom thinks he wants to get back to work, but I am not sure his physical and mental capacities are in conjunction with each other. I keep telling him in each phase, "This to will pass" and not to push himself too hard. Thanks again for the support and encouraging words. It still amazes me how many people are reading this blog, friends and families of friends. Thanks for walking this path with us as we could not handle this by ourselves. Your prayers have kept us positive and your encouragement gives us hope.
Friday, December 14, 2007
Another Hurdle Down
The good news is what we hope will be Tom's last radiation treatment was Thursday, December 13. Of course, like everything else, this was not an easy accomplishment. Tom came down with the flu on Wednesday night but a team of wild horses could not keep him away from his last treatment. There were two other patients that had a numerous amount of treatments along with Tom. One patient completed last Friday. The other patient was done on the same day as Tom. As Tom was getting his last dose this patient came out of the changing room with a graduation cap on her head. This brought a bunch of cheers in the waiting room. The other patient surprisingly came in with flowers for her. I think when he presented them to her there was not a dry eye in that room. Tom entered at that time with his certificate of completion and there were hugs all around! It's hard to explain, but there is a special bond when people go through this together. Total strangers become friends.
Now we enter the final phase of healing. Tom goes back to Dr. Buth on Thursday, December 27 for a recheck and a scan. He will meet with the surgeon, Dr. Teknos at the U of M on Tuesday, January 22, 2008. Tom is very anxious to get back to life as usual now. The reality is he has a lot of healing ahead of him yet. His back and face are still burnt with new skin coming through. His neck and face is still very swollen and his voice continues to be a little above a whisper. As we are getting closer to Christmas we are touched with so many generous Christmas cars and wishes. Thanks again for supporting us each step of the way. Prayer warriors: Pray that the scans come back with good news and that Tom heals quickly.
Now we enter the final phase of healing. Tom goes back to Dr. Buth on Thursday, December 27 for a recheck and a scan. He will meet with the surgeon, Dr. Teknos at the U of M on Tuesday, January 22, 2008. Tom is very anxious to get back to life as usual now. The reality is he has a lot of healing ahead of him yet. His back and face are still burnt with new skin coming through. His neck and face is still very swollen and his voice continues to be a little above a whisper. As we are getting closer to Christmas we are touched with so many generous Christmas cars and wishes. Thanks again for supporting us each step of the way. Prayer warriors: Pray that the scans come back with good news and that Tom heals quickly.
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