Sunday, May 13, 2012
Love One Another
We are on the final countdown to the end of school year 2011-2012. Cody continues in weight training & Katie starts swim club. All three kids are going to camps at some point this summer and our weekends seem to be filling up quickly. Kyle continues to work and we are having our first parents meeting for the 2013 graduating class. How was it that a blink of an eye I was a new mother? Now my boys both look down at me and their sister is almost my height?
Tom and I had a great time at the wedding reception. I got out on the dance floor to shake things up with Cousin Susan, the wedding party and Aunt Judy. Tom even came out on the dance floor a few times! The next morning we were up early and headed to West Bloomfield. Tom had 2 days of scans which he handled pretty well. The Tigers game was cancelled which probably was a blessing as Tom was not feeling all that great, but he had such a positive attitude. The results on Tuesday came back Stable, but a side note that he needs to CONSISTENTLY take his Potassium. I know that he has a hard time taking this pill and does his best, but he does tend to skip it frequently. His levels were low, but a mild discussion about it's importance and they let him come home.
I also took Wednesday off that week and Tom bought me a new set of golf clubs and we went to the Dungeon for lunch which is in Tom's childhood stomping grounds. We had a great day together and the day flew by for having no "plans". Thursday I took a trip with our daughters 6th Grade class to the Chicago Science & Industry Museum. We had a great day and I was exhausted when we got back home. Friday I tried not to pout about going back to work :)
Today we had a fitting sermon about God is Love. Pastor Gary said that because God is Love his flavor flows through all he does. Apostle John wrote about Love and he states: The Lord commands us to Love , if that alone is done it suffices. He ended that Jesus commanded us to Love one Another. All through out my life, my mother ended every note she wrote & laid upon our counter "Love One Another" What a smart and loving woman she truly is and I feel so blessed to have her in my life. I hope that I have left that same influence upon the people I meet. Life can be hard and if we let bitterness settle in, we miss the opportunity that life has to offer.
1 John 3:23 "And this is what God says we must do: Believe on the name of his Son Jesus Christ, and love one another."
Friday, April 27, 2012
On the Road
Tom and the two youngest children went to Detroit over Spring break. The kids accompanied their dad to his monthly visit. In return Tom took them shopping at the Tangier Outlet. Tom felt that since we could not get away for Spring break, he could at least lighten his wallet with shopping. They all came home smiling and seemed to have a good visit. While they were gone, I took Kyle out for a dinner as us "working" people deserved a little something special too. I am realizing that my time with Kyle is getting shorter. I am glad that he is only a Junior this year. Next year will fly by too quickly if time moves as it has lately.
Tom is getting ready to have his next set of scans once again. We are fitting in a little fun with this medical trip. Toms cousin's daughter is having a reception in Bay City and then its onto D-town for two days of scans and the third day the doctor visit and results. However we will fit in a Tigers baseball game with friends before we head back home.
I am actually taking 4 vacation days. I have not had this much time off since 2008. That's a lot of working days! I am looking forward to having my husband's undivided attention. I hope he feels up to doing all that we have planned as earlier this week he was really fighting his chemo effects. I remind him not to push himself too hard. He is not working full-time for a reason but I'm afraid that he sometimes forgets that.
My father got into a car accident last week and it brought back so many emotions of losing my brother. My dad is fine, but it's another reminder of how precious life is. During this time I was reading a book and came across this from The Life of Abraham Lincoln
"This bereavement took much from Lincoln. Did it give him nothing? Patience, earnestness, tenderness, sympathy -- these are sometimes the gifts which are sent by the messenger Sorrow"
Saturday, March 31, 2012
Never Sitting Still
Here we are...the last day of March! Time does not slow down. Yesterday was the first day of Spring break for the kids & the younger two are taking a break. Kyle has a job and will be working 40+ hours at this job (welcome to the working world my son!) This past month Cody has his Wrestling Banquet and the coach gave him recognition for his tough job in his weight class. His dad was so proud that Cody got his Varsity letter and is looking into either displaying it or getting Cody his varsity jacket. Katie will be busy as she is signed up for a new swim club and will have to balance that with her basketball and volleyball camps. We'll have to see if she can fit that all in!
Tom is slipping back into eating cereal three times a day. His appetite is there, but he does not handle the regular meals very well. He is going to have to get back on the Ensure drinks and such as one can't survive on cereal alone. I am on him to try eating as I saw what it did to energy level last time. He continues teaching CPR classes and keeping himself busy with small jobs. I am glad that he has a purpose to get himself up and going everyday.
His trip into Detroit this past month was interesting. It looks like the drug company is making an attempt to push XL-184 to be FDA approved. Tom is very excited about the fact that he could stop making the long drive every month. As I am unable to go with him every time; for me it would mean that I could attend his visits here & be able to support him more. I believe we will know by May if this is moving forward.
Tom was never a sit still kind of guy. When we were first married I think he made people a little nervous because he always stood. I would explain to friends and my family that was just the way he is. I am glad that he still doing better and pushing himself even though being on this medicine makes him feel like curling up on the couch and let the world spin by. Last night Tom ran into an acquaintance that has also been diagnosis with cancer. They talked about their life changing experience and how their outlook has been affected since being diagnosed with this disease. It sounded like is was a deep conversation. I am so thankful that Tom can connect with other cancer survivors and they can empathize unlike so many of us.
"Now your attitude and thought must all be constantly changing for the better." Ephesians 4:23
Tom is slipping back into eating cereal three times a day. His appetite is there, but he does not handle the regular meals very well. He is going to have to get back on the Ensure drinks and such as one can't survive on cereal alone. I am on him to try eating as I saw what it did to energy level last time. He continues teaching CPR classes and keeping himself busy with small jobs. I am glad that he has a purpose to get himself up and going everyday.
His trip into Detroit this past month was interesting. It looks like the drug company is making an attempt to push XL-184 to be FDA approved. Tom is very excited about the fact that he could stop making the long drive every month. As I am unable to go with him every time; for me it would mean that I could attend his visits here & be able to support him more. I believe we will know by May if this is moving forward.
Tom was never a sit still kind of guy. When we were first married I think he made people a little nervous because he always stood. I would explain to friends and my family that was just the way he is. I am glad that he still doing better and pushing himself even though being on this medicine makes him feel like curling up on the couch and let the world spin by. Last night Tom ran into an acquaintance that has also been diagnosis with cancer. They talked about their life changing experience and how their outlook has been affected since being diagnosed with this disease. It sounded like is was a deep conversation. I am so thankful that Tom can connect with other cancer survivors and they can empathize unlike so many of us.
"Now your attitude and thought must all be constantly changing for the better." Ephesians 4:23
Monday, February 27, 2012
Happy Every After
I must say that the last comment really got me thinking....somebody from the UK looked at the site (and read the postings of the last almost 5 years) wow, now I'm impressed. People have told me that I do a good job and a few have joked that I should write a book. I figure this is my book: a book about our lives with Cancer. I found a status page in the blog site and found that people from China, Japan, Netherlands, etc. have viewed this site. I do realize that anybody can read it but I am humbled that many people from all over the world are. I understand people are reaching out and looking for answers, feel good stories, and hope. I wish this was like a fairy tale that ended with a Happy Ever After.
Tom was back in Detroit earlier this month for his tests and results. Tom broke up the tests a little so that I could go with him on a Sunday morning for his MRI. It was a beautiful sunny winter day with clear roads. I drove there and most of the way back grateful that we had such a mild winter thus far. Then Tom and his sister went back for another day of test and stayed over for the results and blood work. Tom did not see Dr. Ali this time. The doctor he saw told him that his scans were once again stable. He also told Tom that he had to deal with these nasty side effects as the drug is keeping his cancer at bay. I know that Tom appreciated hearing this even though it is not exactly what he would like to hear.
Tom has been slowly feeling the effects he felt last December before going off the treatment. It is hard to see him slip back into this pattern. He is trying to act like it's not that big of a deal, but after 22 years of marriage he can't hide it from me. I am starting to constantly ask him again how he feels and he smiles and say "Wonderful" so I tell him, "Me too"
February is also our babies birthday and on her special day was her last "Daddy/Daughter dance" that the school sponsors. I think they had a good night together and Tom said that she did not leave his side much. They danced a lot and then went out for dinner. I was so glad that they had this time together, special memories that will last a lifetime.
Back to the Happily Ever After; well to no one's surprise I believe we can have that in the next life. Hebrews 13:14 "For this world is not our home; we are looking forward to our everlasting home in heaven."
Amen
Tom was back in Detroit earlier this month for his tests and results. Tom broke up the tests a little so that I could go with him on a Sunday morning for his MRI. It was a beautiful sunny winter day with clear roads. I drove there and most of the way back grateful that we had such a mild winter thus far. Then Tom and his sister went back for another day of test and stayed over for the results and blood work. Tom did not see Dr. Ali this time. The doctor he saw told him that his scans were once again stable. He also told Tom that he had to deal with these nasty side effects as the drug is keeping his cancer at bay. I know that Tom appreciated hearing this even though it is not exactly what he would like to hear.
Tom has been slowly feeling the effects he felt last December before going off the treatment. It is hard to see him slip back into this pattern. He is trying to act like it's not that big of a deal, but after 22 years of marriage he can't hide it from me. I am starting to constantly ask him again how he feels and he smiles and say "Wonderful" so I tell him, "Me too"
February is also our babies birthday and on her special day was her last "Daddy/Daughter dance" that the school sponsors. I think they had a good night together and Tom said that she did not leave his side much. They danced a lot and then went out for dinner. I was so glad that they had this time together, special memories that will last a lifetime.
Back to the Happily Ever After; well to no one's surprise I believe we can have that in the next life. Hebrews 13:14 "For this world is not our home; we are looking forward to our everlasting home in heaven."
Amen
Wednesday, February 1, 2012
Advice
Tom had gone off the XL-184 for Christmas and his trip with the boys to Vegas. He had a great time and gained 10 pounds. He came back was able to start back up on the treatment. The chemo effects are starting to return, but he has kept a good attitude during all of this.
Today Tom and I went to the U of M to get Dr. Worden's opinion about staying on the trial or switching to the newly FDA approved drug for MTC. Dr. Worden went over his symptoms and reasons to switch. He is not privy to the trial Tom is currently on, but has patience who failed so he has some knowledge of the trial. He suggested that Tom stay on his current treatment. He said that Tom should be taking this drug while he can take advantage of it's benefits. The drugs are similar, but not exactly. He advised Tom to stay on this until the results do not benefit him. Basically if it's working don't mess with it.
When we left the Cancer Center Tom looked at me and said, "Do you think this was a wasted trip?" I do not ever think getting information and a professional opinion about cancer treatment can be a waste of time. I am grateful that we have a doctor we feel will give us solid facts and a valued opinion. It was a nice trip (sunshine and dry roads) to spend with my man. We had a good day together and I appreciate his positive attitude.
Kids are all doing well. I had Parent Teacher Conferences with the boys teachers and it was all pretty positive. Cody is like his dad and likes to talk. Kyle is quiet like his mother. However all three kids got positive comments about their work habits and how they respect their teachers. Cody had his last Conference Wrestling meet tonight. Though his record will not give him bragging rights, I am proud of his efforts. It's hard to start this sport as late as he did. He has made much improvement and he is a Freshman going up against a lot of Jr. and Sr. high boys. I hope he continues it through his High School years and I'm told it will help him for Football.
We have a busy week ahead. Saturday Cody has a individual wrestling meet and then Tom and Katie will have their last Daddy/Daughter dance (on her 12th b-day). Sunday Tom and I head to West Bloomfield for one on Tom's scans. Then Tom will go back on Tuesday for scans and the results on Wednesday. Life does not slow down for a moment!
Thanks prayer warriors for your continued prayers. What would we do without your support? I am glad that we were given clear advice to make a good decision. I am grateful that Tom is here with me another year :) I hope that Tom can remain positive and fight this nasty disease for years to come!
Today Tom and I went to the U of M to get Dr. Worden's opinion about staying on the trial or switching to the newly FDA approved drug for MTC. Dr. Worden went over his symptoms and reasons to switch. He is not privy to the trial Tom is currently on, but has patience who failed so he has some knowledge of the trial. He suggested that Tom stay on his current treatment. He said that Tom should be taking this drug while he can take advantage of it's benefits. The drugs are similar, but not exactly. He advised Tom to stay on this until the results do not benefit him. Basically if it's working don't mess with it.
When we left the Cancer Center Tom looked at me and said, "Do you think this was a wasted trip?" I do not ever think getting information and a professional opinion about cancer treatment can be a waste of time. I am grateful that we have a doctor we feel will give us solid facts and a valued opinion. It was a nice trip (sunshine and dry roads) to spend with my man. We had a good day together and I appreciate his positive attitude.
Kids are all doing well. I had Parent Teacher Conferences with the boys teachers and it was all pretty positive. Cody is like his dad and likes to talk. Kyle is quiet like his mother. However all three kids got positive comments about their work habits and how they respect their teachers. Cody had his last Conference Wrestling meet tonight. Though his record will not give him bragging rights, I am proud of his efforts. It's hard to start this sport as late as he did. He has made much improvement and he is a Freshman going up against a lot of Jr. and Sr. high boys. I hope he continues it through his High School years and I'm told it will help him for Football.
We have a busy week ahead. Saturday Cody has a individual wrestling meet and then Tom and Katie will have their last Daddy/Daughter dance (on her 12th b-day). Sunday Tom and I head to West Bloomfield for one on Tom's scans. Then Tom will go back on Tuesday for scans and the results on Wednesday. Life does not slow down for a moment!
Thanks prayer warriors for your continued prayers. What would we do without your support? I am glad that we were given clear advice to make a good decision. I am grateful that Tom is here with me another year :) I hope that Tom can remain positive and fight this nasty disease for years to come!
Saturday, December 31, 2011
New Year's Decision
Reflecting back on this year has been bittersweet. I am so glad that Tom is here to walk with us in 2011. I don't know how I would have made it through the loss of my brother without him by my side. We have taken the opportunity this year to see people that we have lost touch with. Tom has had many people bring him to Detroit and spend time with him. He has enjoyed the time with his family/friends. As always, the generosity of people has continued to amaze us.
Towards the end of this year, the effects of Tom's chemo was noticed by many. It's hard to describe to people how Tom feels. I usually tell people it's like having the flu but knowing that you will not feel better in a couple of days....This is his life.
The kids are all handling this well. I just found out today that when our eldest gets home he always checks on how his dad is doing when he walks through the door. He said he even "tucks him in" if dad is having a bad day. That's my Kyle! Cody makes sure dad is feeling well and is able to come to his events & Katie loves to give her daddy hugs. This year at Thanksgiving we had to write about the things we are thankful for. I wrote that we have a lot of stress in our family & I'm grateful for the times we sit around the dinner table talking & laughing about silly things. I will just say we have the weirdest table conversations & funny memories!
On Tom's last visit to Detroit the doctor decided to remove him from treatment for one cycle. Tom had requested this as his side effects have become worse and he needed a break. I think the fact that the holidays were coming up and Tom wanted to enjoy sometime with his family without being sick might also have had something to do with it. After just 3 days, you could see the difference in him. I had my husband back even if it is for just 28 days.
Tom talks with other MTC patients on a chat site. We have found out that 3 people currently on the trial are experiencing growth in their cancer again and have been removed from the Clinical Trial. Tom also found out that the MTC drug that was approved earlier this year is available and that his U of M oncologist is able to administer it. Tom wondered this spring if he should switch to the FDA approved drug. In this last month he started to look into it again. He has an appointment with Dr. Worden @ the U of M to discuss this mid January. Tom would like Dr. Worden's opinion about the direction Tom should go with his treatment. If he does decide to go with the drug Vandetanib Tom could receive all his treatment here in Grand Rapids under Dr. Worden's direction. While we are so grateful for this drug keeping Tom alive, being in a clinical study on the other side of the state has worn on us both physically, emotionally, and financially.
We both understand that this can't be a flippant decision. It is a huge choice and needs to be researched, talked about, and prayed about. I understand that if Tom chooses to come out of the trial he will not be able to get back in if the other drug does not work.
1 Timothy:1 "Here are my directions: Pray much for others; plead for God's mercy upon them; give thanks for all he is going to do for them."
Towards the end of this year, the effects of Tom's chemo was noticed by many. It's hard to describe to people how Tom feels. I usually tell people it's like having the flu but knowing that you will not feel better in a couple of days....This is his life.
The kids are all handling this well. I just found out today that when our eldest gets home he always checks on how his dad is doing when he walks through the door. He said he even "tucks him in" if dad is having a bad day. That's my Kyle! Cody makes sure dad is feeling well and is able to come to his events & Katie loves to give her daddy hugs. This year at Thanksgiving we had to write about the things we are thankful for. I wrote that we have a lot of stress in our family & I'm grateful for the times we sit around the dinner table talking & laughing about silly things. I will just say we have the weirdest table conversations & funny memories!
On Tom's last visit to Detroit the doctor decided to remove him from treatment for one cycle. Tom had requested this as his side effects have become worse and he needed a break. I think the fact that the holidays were coming up and Tom wanted to enjoy sometime with his family without being sick might also have had something to do with it. After just 3 days, you could see the difference in him. I had my husband back even if it is for just 28 days.
Tom talks with other MTC patients on a chat site. We have found out that 3 people currently on the trial are experiencing growth in their cancer again and have been removed from the Clinical Trial. Tom also found out that the MTC drug that was approved earlier this year is available and that his U of M oncologist is able to administer it. Tom wondered this spring if he should switch to the FDA approved drug. In this last month he started to look into it again. He has an appointment with Dr. Worden @ the U of M to discuss this mid January. Tom would like Dr. Worden's opinion about the direction Tom should go with his treatment. If he does decide to go with the drug Vandetanib Tom could receive all his treatment here in Grand Rapids under Dr. Worden's direction. While we are so grateful for this drug keeping Tom alive, being in a clinical study on the other side of the state has worn on us both physically, emotionally, and financially.
We both understand that this can't be a flippant decision. It is a huge choice and needs to be researched, talked about, and prayed about. I understand that if Tom chooses to come out of the trial he will not be able to get back in if the other drug does not work.
1 Timothy:1 "Here are my directions: Pray much for others; plead for God's mercy upon them; give thanks for all he is going to do for them."
Sunday, December 18, 2011
Christmas Wish
I know for many it's a busy time of the year. For our family it starts with the Thanksgiving celebration and goes until the New Year. This year after the family Turkey time we headed to our friends house in Ohio. There were 36 people family/friends who gathered to watch University of Michigan play The Ohio State. After traveling there for almost 7 years to watch U of M lose, it was a sweet victory to watch them win. As always we all had a fun time and ribbed each other all weekend. Tom however was not feeling well the entire trip and many concerned friends saw what his daily life was like. Tom was very quite and not himself this trip. I saw on their faces they got a little taste of helplessly watching him struggle. He tried to keep up a good front, but he was not able to for 3 our day visit.
Tom had a good doctor visit and talked with the Dr. about being off the drug this Christmas. His Potassium and Magnesium levels had dropped again, but the swelling was better as well as his breathing once he switched back to water pill. Tom also talked about his rib pain. Once he's back on in January and if it appears again, Tom will need an x-ray. Dr. Ali did say this is becoming a common side effect of this drug.
He is also enjoying watching Cody wrestle. Cody made the Varsity squad and has kept us busy with his schedule. I wonder if Cody is actually enjoying wrestling more than football. We are checking out other High Schools spirit shops and such. Tom is getting some ideas to bring to the Booster's committee he is on. I was thinking that Cody would be on the JV team and we would have a easy year with wrestling, but I am getting a better understanding of the sport and am so proud of how well he's doing for his second year. After his first invite last Saturday as we were coming home I said. "Cody, all these years of your dad watching football he couldn't get me involved. Since you play I can't get enough of watching it. Now your into wrestling and I find I'm enjoying it too. What next?" He's still thinking on that one!
Tom has been off the drug for a little over a week. His appetite is coming back and I hope his energy level will also. He has been doing so much around the house getting ready for Christmas. I have been busy with working and school. I have my exam tomorrow and am contemplating going back or not. I'll know when the time is right to go back. Right now I feel that I'm overloading myself trying not to miss anything. I don't want to miss a thing!
We learned this month that another MTC patient who has been on the trial longer than Tom has been taken off because the drug is no longer working. It breaks my heart to hear such sobering news this Christmas season. I feel it's another reality slap in the face of how serious this disease is. It makes me realize once again that we have been so luck to have Tom here today.
My Christmas wish this year is that Tom will continue to feel good once he is back on the drug. I hope that we don't take each other for granted both inside and outside our family. My goal is to let those I see this Holiday Season know how much they mean to me. Have a safe and Happy Holidays!
Tom had a good doctor visit and talked with the Dr. about being off the drug this Christmas. His Potassium and Magnesium levels had dropped again, but the swelling was better as well as his breathing once he switched back to water pill. Tom also talked about his rib pain. Once he's back on in January and if it appears again, Tom will need an x-ray. Dr. Ali did say this is becoming a common side effect of this drug.
He is also enjoying watching Cody wrestle. Cody made the Varsity squad and has kept us busy with his schedule. I wonder if Cody is actually enjoying wrestling more than football. We are checking out other High Schools spirit shops and such. Tom is getting some ideas to bring to the Booster's committee he is on. I was thinking that Cody would be on the JV team and we would have a easy year with wrestling, but I am getting a better understanding of the sport and am so proud of how well he's doing for his second year. After his first invite last Saturday as we were coming home I said. "Cody, all these years of your dad watching football he couldn't get me involved. Since you play I can't get enough of watching it. Now your into wrestling and I find I'm enjoying it too. What next?" He's still thinking on that one!
Tom has been off the drug for a little over a week. His appetite is coming back and I hope his energy level will also. He has been doing so much around the house getting ready for Christmas. I have been busy with working and school. I have my exam tomorrow and am contemplating going back or not. I'll know when the time is right to go back. Right now I feel that I'm overloading myself trying not to miss anything. I don't want to miss a thing!
We learned this month that another MTC patient who has been on the trial longer than Tom has been taken off because the drug is no longer working. It breaks my heart to hear such sobering news this Christmas season. I feel it's another reality slap in the face of how serious this disease is. It makes me realize once again that we have been so luck to have Tom here today.
My Christmas wish this year is that Tom will continue to feel good once he is back on the drug. I hope that we don't take each other for granted both inside and outside our family. My goal is to let those I see this Holiday Season know how much they mean to me. Have a safe and Happy Holidays!
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