Here we go again spending our vacation time at the University of Michigan. This should have been a routine follow up appointment and a farewell to Tom's surgeon but as things always go it was not that easy. They looked at a bump in Tom's neck that his physical therapist found last month. Dr. Teknos stayed very positive that this could just be a stitch or a place where he tied off a couple of vessels. There is really no way to tell for sure without a scan. They have moved up his September scan to get him in for one ASAP. Tom will also need a blood draw to look at his calcitonin levels along with a base line of his calcium. The good news is that we will now have all of these procedures done on this side of the state under the care of Dr. Hart. This was the first time the kids went with us and they were well behaved. We took a little time to show them around the hospital so they could get an idea where Mom and Dad have been disappearing to these last few months. Of course we could not leave Ann Arbor without taking the kids over to the Big House.
On this trip we were also able to spend a few days in Cleveland. This will be the kids only vacation this year and it was nice to just relax with good friends. We took the kids to the Cleveland Zoo and while the boys hit the links at the country club, the girls enjoyed laying out poolside and watching the kids play. The adults even got a night out on the town with a dinner and a show, thank goodness our eldests are now at the babysitting age.
This week will be the start of another round of phone calls to get the ball rolling for Tom's next step. I'm again glad for this blog as it saves so many phones calls and is convenient. Please remember to keep Tom in your prayers.
Sunday, July 20, 2008
Sunday, July 13, 2008
Doctor Who?
This is the week that Tom will discuss his future care and where that will take place. I hope that we will get all our questions answered during this visit. We will also discuss the prescriptions that Tom is currently taking, and see if he can stop taking some that the doctor previously discussed. I know that Tom is very comfortable with Dr. Teknos and this may be a little disturbing having a new doctor that will be in the drivers seat, but I feel more at peace with this step than when we first got the news.
Tom's neck is very tight and feels like a hard lump as I have been giving him neck massages. He says that I do a good job working the scare tissue. We were not able to get to the PT last week, but I guess I'm all he has got for now. I can't imagine doing these massages all day, my hands are sore after 30 minutes. Tom's energy level is about the same. I now hear the same old snoring some nights and believe it or not, it's a beautiful sound!
Please continue to pray for Tom's healing and direction of care. I thank so many of you that inquire what specific things to pray for and that keep our family in your prayer life. I know so many of you have "stuff" going on in your own lives and I appreciate it when we can all be "real" with our lives. Today our pastor shared peoples "Impossible" in their lives (some of the notes made me want to cry) that God can make "Possible" and it made me think of all the blessing along the road of trusting him as he shows us that nothing is impossible!
Tom's neck is very tight and feels like a hard lump as I have been giving him neck massages. He says that I do a good job working the scare tissue. We were not able to get to the PT last week, but I guess I'm all he has got for now. I can't imagine doing these massages all day, my hands are sore after 30 minutes. Tom's energy level is about the same. I now hear the same old snoring some nights and believe it or not, it's a beautiful sound!
Please continue to pray for Tom's healing and direction of care. I thank so many of you that inquire what specific things to pray for and that keep our family in your prayer life. I know so many of you have "stuff" going on in your own lives and I appreciate it when we can all be "real" with our lives. Today our pastor shared peoples "Impossible" in their lives (some of the notes made me want to cry) that God can make "Possible" and it made me think of all the blessing along the road of trusting him as he shows us that nothing is impossible!
Friday, July 4, 2008
Challenges
Happy 4th of July to everyone. I want to say thank you to all the people who have served and continue to serve our country. Even though we do not all agree on how our nation should go forward, and whom will be our leader, at least we have the freedom to voice our opinion.
Tom has been doing well. He has been pushing himself to get his energy level back to where it once had been. I was thinking the other day that it has been a while since I was up for long periods at night listening to his breathing. Next week I am going with Tom to his PT. I will learn the proper technique to give him a neck rub. Every time I do rub Tom's neck and he jumps from the "prickles" I stop, but Tom says that it is necessary to wake up his nerves. Tom was also able to see the new Lemmon-Holton Caner Center and said that is was quite impressive. I wonder how many times we will get to visit this new site.
Tom also received a letter last week from Dr. Teknos stating that July he will leave U of M to be affliated with OSU (yes I mean Ohio State University). Though we are saddened with this news we are wondering if this is an opportunity to bring Tom's care back to the West Side. I have since made phone calls and found out that we do have an Octreotide Scan here in GR. We will confirm with Dr. Teknos that his oncologist, Dr.Campbell and primary, Dr. Divic will continue Tom's care. It would definately be eaiser to plan a 30 minute trip than a half day trip, and nicer for the pocket book too!
Prayer warriors, please continue to pray for Tom's energy. Also for the path of Tom's continued care. Thanks be to God that Tom is doing so well. He has such a positive attitude. We have learned so much on this journey, more than we could every convey.
Tom has been doing well. He has been pushing himself to get his energy level back to where it once had been. I was thinking the other day that it has been a while since I was up for long periods at night listening to his breathing. Next week I am going with Tom to his PT. I will learn the proper technique to give him a neck rub. Every time I do rub Tom's neck and he jumps from the "prickles" I stop, but Tom says that it is necessary to wake up his nerves. Tom was also able to see the new Lemmon-Holton Caner Center and said that is was quite impressive. I wonder how many times we will get to visit this new site.
Tom also received a letter last week from Dr. Teknos stating that July he will leave U of M to be affliated with OSU (yes I mean Ohio State University). Though we are saddened with this news we are wondering if this is an opportunity to bring Tom's care back to the West Side. I have since made phone calls and found out that we do have an Octreotide Scan here in GR. We will confirm with Dr. Teknos that his oncologist, Dr.Campbell and primary, Dr. Divic will continue Tom's care. It would definately be eaiser to plan a 30 minute trip than a half day trip, and nicer for the pocket book too!
Prayer warriors, please continue to pray for Tom's energy. Also for the path of Tom's continued care. Thanks be to God that Tom is doing so well. He has such a positive attitude. We have learned so much on this journey, more than we could every convey.
Friday, June 20, 2008
Relaxing - Not Yet
I hope that these summer days do not fly as fast as this past week! It seems as one event ends for the kids another starts. I wonder when we will all get to relax this summer.
Tom is doing well. His energy level is lower than he anticipates it to be. His physical therapist seems to be happy with his shoulder and arm range and motion. They will now concentrate on his neck area (the swelling still is apparent some days). Tom is sure enjoying being with the kids this summer. I am glad that they have time to spend with their dad. I really feel that we are all appreciating each other more this past year. The kids sure do show more affection this past year than I've seen before.
I have a friend at work that gave me a book last fall that is called "Streams In The Desert". It is a daily devotional book. It is designed to especially help those who are going through a difficult time in life. The other day I opened it up and read about how we sometimes try to walk around obstacles when we become discouraged and/or fearful. We would rather take the easy way around than walk through and face it. It also talked about physical ailment and how God can heal. I looked back at this past year and could identify with this devotional. In this past week I also found a poem in this book that I would like to share:
Be still! Just now be still!
Something your soul has never heard,
Something unknown to any song of bird,
Something unknown to any wind, or wave, or star,
A message from the Father's land afar,
That with sweet joy the homesick soul will thrill,
And comes to you only when you're still.
Be still! Just now be still!
There comes a presence very mild and sweet;
White are the sandals of His noiseless feet.
It is the Comforter whom Jesus sent
To teach you what the words He uttered meant.
The willing, waiting spirit, He does fill
If you would hear His message,
Dear soul, be still!
Amen
Tom is doing well. His energy level is lower than he anticipates it to be. His physical therapist seems to be happy with his shoulder and arm range and motion. They will now concentrate on his neck area (the swelling still is apparent some days). Tom is sure enjoying being with the kids this summer. I am glad that they have time to spend with their dad. I really feel that we are all appreciating each other more this past year. The kids sure do show more affection this past year than I've seen before.
I have a friend at work that gave me a book last fall that is called "Streams In The Desert". It is a daily devotional book. It is designed to especially help those who are going through a difficult time in life. The other day I opened it up and read about how we sometimes try to walk around obstacles when we become discouraged and/or fearful. We would rather take the easy way around than walk through and face it. It also talked about physical ailment and how God can heal. I looked back at this past year and could identify with this devotional. In this past week I also found a poem in this book that I would like to share:
Be still! Just now be still!
Something your soul has never heard,
Something unknown to any song of bird,
Something unknown to any wind, or wave, or star,
A message from the Father's land afar,
That with sweet joy the homesick soul will thrill,
And comes to you only when you're still.
Be still! Just now be still!
There comes a presence very mild and sweet;
White are the sandals of His noiseless feet.
It is the Comforter whom Jesus sent
To teach you what the words He uttered meant.
The willing, waiting spirit, He does fill
If you would hear His message,
Dear soul, be still!
Amen
Friday, June 13, 2008
Summer
Well, school is officially out for summer break for the kids. They are loving the later bedtime and no homework! I tease them about homework at night and have volunteered to make some up, but so far nobody has wanted to do more than hang out for the last few days.
Tom has been busy also. He still has physical therapy 2 times a week. They really do a number on him because he comes home really sore. Tom has still had some rough nights. His breathing has become much more regular than I have heard since pre-op. Tom still tires easily. Even on the nights that he gets a full nights rest his energy has not been what it has once been. He does not admit to it much though. He has been trying to bicycle everywhere around town; good exercise, but it may also have something to do the with $4.00 plus gallon of gas!?
Thank you for the phone calls and e-mails. It really makes us feel good to know that there are so many people pulling for our family. I was thinking back on last year and how Tom almost cancelled a couple of his appointments because they were not convenient and how detrimental that could have been. I have always loved the Trisha Yearwood song "How Do I live Without You" and it has taken on a new meaning to me. We truly have been on a roller coaster ride and I hope the path does not have any loops ahead. I hope that we have a future with a smooth clear path. This weekend we have Fathers Days coming up and I think the kids and myself see this as more of a celebration than ever before. Happy Fathers Day my love!
Tom has been busy also. He still has physical therapy 2 times a week. They really do a number on him because he comes home really sore. Tom has still had some rough nights. His breathing has become much more regular than I have heard since pre-op. Tom still tires easily. Even on the nights that he gets a full nights rest his energy has not been what it has once been. He does not admit to it much though. He has been trying to bicycle everywhere around town; good exercise, but it may also have something to do the with $4.00 plus gallon of gas!?
Thank you for the phone calls and e-mails. It really makes us feel good to know that there are so many people pulling for our family. I was thinking back on last year and how Tom almost cancelled a couple of his appointments because they were not convenient and how detrimental that could have been. I have always loved the Trisha Yearwood song "How Do I live Without You" and it has taken on a new meaning to me. We truly have been on a roller coaster ride and I hope the path does not have any loops ahead. I hope that we have a future with a smooth clear path. This weekend we have Fathers Days coming up and I think the kids and myself see this as more of a celebration than ever before. Happy Fathers Day my love!
Thursday, May 29, 2008
Oncology
Tom met with Dr. Campbell today. They went over the results of Tom's scan in April, which were clean. Dr. Campbell also talked about somostatin therapy. At this time he feels that there is no reason for this treatment. He will continue to monitor Tom's scans and calcitonin levels. If there is any indication that the cancer has returned, they will start this therapy. As far as he is concerned, for today, Tom is cancer free. As we left the Dr.'s office we could see heavy smoke rising above Grand Rapids. Tom said something big must be burning. We turned on the radio in the car and horrified to hear that Aeromed had crashed into Tom's hospital. Tom was worried that someone he knew may have been killed. We were relieved to hear that the pilot and his passenger were able to escape onto the roof of the hospital before the helicopter blew up.
Tom will have to return to Ann Arbor in July for another follow-up appointment with his surgeon and of course blood work. He just can't get out of there without getting poked once. During the July visit we will make his appointment for his next Octreotide scan which we anticipate to be scheduled sometime in September.
Tom is otherwise feeling well. He is staying busy with school and work. He got a little break last week when his friend Dan was in Detroit and invited him over for a Tigers game. They had great seats. Tom had to get up early the next morning to be at work by 9:00 a.m. and was dragging all day, but I could tell by the excitement of his voice that it was worth it. Kyle has decided to take up golf so the boys have been hitting the driving range. Tom was happy that he was able to swing a club (thanks to all the physical therapy). Unfortunately it has not improved his golf swing as he was hoping for.
I thought I would leave you with this poem that Tom found and shared with me:
Paranoia
© Copyright by Linda Nielsen
I know I have aches and pains,I've had them both for years.
But now each brings a panic,and a fresh new set of fears.
If I even feel a tiny bump no matter of its size,
I feel my cancer has come back,to claim another prize.
Fear is with me all the time,it haunts me night and day.
To think this batch of cells gone wrong,just yet might get their way.
The doctors nod when I dash in,and send me on my way.
Assuring me that once again,I'm really here to stay.
For in a car I could crash,or get stung by a killer bee.
Maybe take a header down some stairs,this all could happen to me.
I have to learn that dangers lurk,and recurrence is but one.
But not worrying over trivial things,is easier said than done.
Having lived through such a scare,it's hard NOT to be afraid.
For if they'd only say I'm cured,I'd really have it made.
I know in time this will subside,my worries should be less.
Life for me will once again,be filled with happiness
Tom will have to return to Ann Arbor in July for another follow-up appointment with his surgeon and of course blood work. He just can't get out of there without getting poked once. During the July visit we will make his appointment for his next Octreotide scan which we anticipate to be scheduled sometime in September.
Tom is otherwise feeling well. He is staying busy with school and work. He got a little break last week when his friend Dan was in Detroit and invited him over for a Tigers game. They had great seats. Tom had to get up early the next morning to be at work by 9:00 a.m. and was dragging all day, but I could tell by the excitement of his voice that it was worth it. Kyle has decided to take up golf so the boys have been hitting the driving range. Tom was happy that he was able to swing a club (thanks to all the physical therapy). Unfortunately it has not improved his golf swing as he was hoping for.
I thought I would leave you with this poem that Tom found and shared with me:
Paranoia
© Copyright by Linda Nielsen
I know I have aches and pains,I've had them both for years.
But now each brings a panic,and a fresh new set of fears.
If I even feel a tiny bump no matter of its size,
I feel my cancer has come back,to claim another prize.
Fear is with me all the time,it haunts me night and day.
To think this batch of cells gone wrong,just yet might get their way.
The doctors nod when I dash in,and send me on my way.
Assuring me that once again,I'm really here to stay.
For in a car I could crash,or get stung by a killer bee.
Maybe take a header down some stairs,this all could happen to me.
I have to learn that dangers lurk,and recurrence is but one.
But not worrying over trivial things,is easier said than done.
Having lived through such a scare,it's hard NOT to be afraid.
For if they'd only say I'm cured,I'd really have it made.
I know in time this will subside,my worries should be less.
Life for me will once again,be filled with happiness
Saturday, May 24, 2008
May
May is always a busy time of the year. Each school has their "field trip" and many other activities. The kids enjoy being outside, the sun is up longer, and as schools are winding down with their themes/projects; it's hard to get the homework done at night. Thank goodness we can actually count down the days to help them focus on the few homework days we have left. I have to remember not to "whine" when they have homework and try to be a good example. Many people laughed last year when I stated, "I've passed 1st grade for the fourth time!" However, I can gladly say that all my kids really pushed themselves this year and they were able to do many things on their own.
Speaking of school, Tom has had two classes under his belt this semester. His class will be done the end of June, then he will be taking 2 classes next fall. It really is amazing to see his motivation. Tom is doing well with all that he has going on. I know that I could not stand in his shoes and keep up at his pace. Next Thursday, we see Dr. Campbell. He will be consulting us on the next step of Tom's progress. We will be discussing Somnostatin Therapy, per request of Dr. Teknos. I am preparing to take a lot of notes because I'm sure this will be another involved process. We also received the bill for Tom's gallbladder surgery. We are definitely over the $200,000 mark within the last year. I am thankful that this is not out of pocket cost.
Tom and I have also reached another annual stone, another year of marriage. This is year 19 for us. At the hospital we had a technician laughing as we told him the secret of our "happy marriage": Whoever leaves, has to take the kids with them! So here we are together for another year and all the more grateful for each other.
Speaking of school, Tom has had two classes under his belt this semester. His class will be done the end of June, then he will be taking 2 classes next fall. It really is amazing to see his motivation. Tom is doing well with all that he has going on. I know that I could not stand in his shoes and keep up at his pace. Next Thursday, we see Dr. Campbell. He will be consulting us on the next step of Tom's progress. We will be discussing Somnostatin Therapy, per request of Dr. Teknos. I am preparing to take a lot of notes because I'm sure this will be another involved process. We also received the bill for Tom's gallbladder surgery. We are definitely over the $200,000 mark within the last year. I am thankful that this is not out of pocket cost.
Tom and I have also reached another annual stone, another year of marriage. This is year 19 for us. At the hospital we had a technician laughing as we told him the secret of our "happy marriage": Whoever leaves, has to take the kids with them! So here we are together for another year and all the more grateful for each other.
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