At 4:30 am on Sunday morning Tom and I looked out the window and saw rain. I opted to get more sleep, but my experienced husband said, lets get moving we don't know what we'll run into around Lansing. His prediction was correct and we had a white knuckle drive all the way to Detroit. We arrived on time but exhausted. Tom's first scan was his MRI and then we spent the afternoon shopping for each other for Christmas deals...and we got them :)
We settled down at the Henry Ford Guest Housing Sunday night and were sleeping soundly when at 12:02 am the fire alarm went off and we needed to evacuate the building. Tom was not patient with me as I was getting dressed because I refused to stand outside in my silk nightgown in a blizzard. After about 1/2 an hour of total confusion we were allowed back up to our rooms with the explanation of the "Residency floors fire alarm was accidentally pulled!" I felt sorry for the parents of the 6 infants I saw walking around.
Monday we bounced back & forth between West Bloomfield and Detroit hospitals. It was sunny but bitterly cold. After all the contrast & radioactive meds that Tom was given, he was ready to head back to the room. I have to say that all the time spent waiting between tests and driving between hospitals was exhausting!
Tuesday morning we were called into Dr. Ali's office early as he needed to leave the hospital before our appointed time. Luckily we were just across the courtyard and ready to go when we got the call. Dr. Ali met us at the reception room and ushered us into a room to hear the results. He said that he was pleased with the results from the scans. All the tumors were stable and there was no new areas of growth. Dr. Ali commented about Tom's weight loss, he was down another 4 pounds this month. He is almost back to what he weighed in High School. As long as the blood work shows that his levels remain satisfactory they will not worry about his weight loss yet. They talked about the severity of the side effects to the drug and decided to keep Tom on the current dose. I find it interesting how this drug effects patients differently. Tom is the only patient in the Detroit study who is showing rapid weight loss as well as his cool new hair color.
We were told that this study will be completed at the first of the year. It is our understanding that while the drug company moves towards FDA approval Tom will still be allowed access to the drug. We are hoping that this will mean less trips to Detroit. The drive home void of stress, we just couldn't wait to get there!
The side effect of the chemo along with the 12 hour night shifts have become too much for Tom. His doctor is placing him back on disability effective December 29 (he never wanted Tom to return back to work in the first place). This will be Tom's last weekend of working nights. While I know he struggles with this decision he has finally accepted that his doctor, friends, and most of all his wife are right. I am looking forward to having my Mr. Mom at home again.
Psalms 95:6-7 Come, kneel before the Lord our Maker, for he is our God. We are his sheep and he is our Shepherd. Oh, that you would hear him calling you today and come to him!
Wednesday, December 15, 2010
Wednesday, November 17, 2010
November Visit
Has another month flown by? Life is not slowing down anytime too soon. Katie is down to her last game this Saturday. We take a breather in December before the 2 younger ones begin again in January. Tom is counting down the last days of working weekends. Starting in January he will be on his old schedule of Monday-Wednesday nights. Hopefully this will be easier as we will all be gone and the house will be quiet for him to rest. Tom has not done much EMS and I know that he misses it and the people he works with. We will be gearing up for the holidays really soon starting with our 21 year tradition of setting up the x-mas tree over Thanksgiving weekend. Tom says he needs a little Christmas right this very minute.....you know the tune!
Yesterday Tom went solo to Detroit. He had a good visit with the Dr. Ali. No changes again and they were pleased with his lab results. Tom was able to meet up with the other MTC patient while he was there. They talked about how their lives had changed and the challenges they face with the disease and effects of the chemo. I think it's great that they are able to encourage one another and share as they can't in depth with the rest of us who can only sympathize. This other patient has been on this chemo for over 2 years, that in itself is very encouraging!
Tom is scheduled to get his Scans December 12 & 13 and then on the 14th he will hear the results. I plan to go with him this trip for 3 days of medical fun! Hopefully he will feel up to shopping while we are there as I really liked the Novi mall! The contrast that Tom has to take for these tests can send him for a loop so we may just have to relax at the hotel. That may be ok also as we don't usually get much time to rest up.
I hope that everyone has a great Thanksgiving and will take the time to reflect the meaning of being thankful. We all have so much that we take for granted. I am thankful for all of you who take time to connect with and pray for our family. I know I've said this before, but I don't know how I would get through life without all of your support. I can't speak for Tom but I know he has been so overwhelmed by all that people have said & done for us.
2Corinthians 4:8-10 "We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don't know why things happen as they do, but we don't give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going. These bodies of ours are constantly facing death just as Jesus did; so it is clear to all that it is only the living Christ within (who keeps us safe)"
Yesterday Tom went solo to Detroit. He had a good visit with the Dr. Ali. No changes again and they were pleased with his lab results. Tom was able to meet up with the other MTC patient while he was there. They talked about how their lives had changed and the challenges they face with the disease and effects of the chemo. I think it's great that they are able to encourage one another and share as they can't in depth with the rest of us who can only sympathize. This other patient has been on this chemo for over 2 years, that in itself is very encouraging!
Tom is scheduled to get his Scans December 12 & 13 and then on the 14th he will hear the results. I plan to go with him this trip for 3 days of medical fun! Hopefully he will feel up to shopping while we are there as I really liked the Novi mall! The contrast that Tom has to take for these tests can send him for a loop so we may just have to relax at the hotel. That may be ok also as we don't usually get much time to rest up.
I hope that everyone has a great Thanksgiving and will take the time to reflect the meaning of being thankful. We all have so much that we take for granted. I am thankful for all of you who take time to connect with and pray for our family. I know I've said this before, but I don't know how I would get through life without all of your support. I can't speak for Tom but I know he has been so overwhelmed by all that people have said & done for us.
2Corinthians 4:8-10 "We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don't know why things happen as they do, but we don't give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going. These bodies of ours are constantly facing death just as Jesus did; so it is clear to all that it is only the living Christ within (who keeps us safe)"
Wednesday, October 20, 2010
Monthly visit
Fall is here! It is Tommy's favorite time of the year. He is enjoying watching his youngest boy playing Football and trying to make it to his daughter's basketball games. While Tom is unable to eat, he still joins us at dinner time. It has been nice to have laughter at our dinner table again on the few nights the family can actually sit together. It's memories I hope we can all cherish for years. I am so grateful for the times we have.
This trip Tom had company. Thank you to his friend Chris who took the time to take Tom to Detroit and did not get him lost! :) The boys had a few hours to kill so they found their way over to Trader Joe's in Grosse Pointe. My wine rack is now stocked for the holidays.
Dr. Ali. was pleased with the way Tom's body is handling the chemo. His platelet's were low and they once again wanted to take him off the Maxide, but we've been there with the face swelling and the difficulty breathing so Tom convinced them to keep him on. He was having some cramping in his legs and was told that this is a side effect of having low potassium. It was decided to keep everything the same for Tom. If things do not improve by his next visit in November, Tom may be put on yet another medication.
Psalms 126:4 "May we be refreshed as by streams in the desert"
I actually have a book titled that and it has helped me through some tough times. Thanks again to my friend who gave it to me and to others that hold our family in their prayers. Life is tough...pray hard!
This trip Tom had company. Thank you to his friend Chris who took the time to take Tom to Detroit and did not get him lost! :) The boys had a few hours to kill so they found their way over to Trader Joe's in Grosse Pointe. My wine rack is now stocked for the holidays.
Dr. Ali. was pleased with the way Tom's body is handling the chemo. His platelet's were low and they once again wanted to take him off the Maxide, but we've been there with the face swelling and the difficulty breathing so Tom convinced them to keep him on. He was having some cramping in his legs and was told that this is a side effect of having low potassium. It was decided to keep everything the same for Tom. If things do not improve by his next visit in November, Tom may be put on yet another medication.
Psalms 126:4 "May we be refreshed as by streams in the desert"
I actually have a book titled that and it has helped me through some tough times. Thanks again to my friend who gave it to me and to others that hold our family in their prayers. Life is tough...pray hard!
Tuesday, September 21, 2010
The Rat Results
I read the title to Tom and he stated "Sometimes it's good to be a rat!"
Tom came home today after being in Detroit since Sunday. He had a Bone Density test, MRI, and CAT scan. This morning he met with his doctor to go over the results. The doctor was very pleased with the scans and told Tom that he his bone scan showed that the cancer is stable. The cancer will not shrink in the bone so stabilizing it is the best result. The scans over his soft tissue (lungs and liver) shows that the cancer has shrunk. Dr. Ali talked with Tom about his side effects and determined that Tom will stay on his current dosage again. Tom has some blistering in his feet. He also has numbness in the fingers but Dr. Ali said that as long as it is not effecting his writing then he feels Tom should continue with his medication.
Tom will be back to Detroit on October 19 for a 4 hour visit. Then head back again on November 16. He will have scan sometime in early December. Then on December 16 he go over those scan results at his last visit for the year.
Thank you to all who have prayed over Tom and our family. On Saturday when I was explaining to the kids that Dad would be gone again for more test I was asked some questions. I told Katie and Cody that these scans show how Dad's cancer is doing if it grew or stayed the same. Katie pipped up and said "Or shrinks". I smiled and said, "Yes, that too. But I was afraid to say it out loud. Let's hope that is the case" Today Tom got to tell her that was! It was a great to see her face light up!
God makes a promise-faith believes it, hope anticipates it, patience quietly awaits it.
"But we have the true hope that comes from being made right with God, and by the Spirit we wait eagerly for this hope" Galatians 5:5
Tom came home today after being in Detroit since Sunday. He had a Bone Density test, MRI, and CAT scan. This morning he met with his doctor to go over the results. The doctor was very pleased with the scans and told Tom that he his bone scan showed that the cancer is stable. The cancer will not shrink in the bone so stabilizing it is the best result. The scans over his soft tissue (lungs and liver) shows that the cancer has shrunk. Dr. Ali talked with Tom about his side effects and determined that Tom will stay on his current dosage again. Tom has some blistering in his feet. He also has numbness in the fingers but Dr. Ali said that as long as it is not effecting his writing then he feels Tom should continue with his medication.
Tom will be back to Detroit on October 19 for a 4 hour visit. Then head back again on November 16. He will have scan sometime in early December. Then on December 16 he go over those scan results at his last visit for the year.
Thank you to all who have prayed over Tom and our family. On Saturday when I was explaining to the kids that Dad would be gone again for more test I was asked some questions. I told Katie and Cody that these scans show how Dad's cancer is doing if it grew or stayed the same. Katie pipped up and said "Or shrinks". I smiled and said, "Yes, that too. But I was afraid to say it out loud. Let's hope that is the case" Today Tom got to tell her that was! It was a great to see her face light up!
God makes a promise-faith believes it, hope anticipates it, patience quietly awaits it.
"But we have the true hope that comes from being made right with God, and by the Spirit we wait eagerly for this hope" Galatians 5:5
Thursday, September 16, 2010
Weekend Trip
It has been way to long since my last blog. Too long actually, I had to be reminded to update it by family members. The kids are back into school and we are falling into the "school" routine. Tom is back to work, ready or not.
On Sunday Tom is heading to West Bloomfield for 2 fun filled days of scans. Because of the medication they give to him before & during the scan they have to be spaced out as to not effect the other scans. Tom will be having his first scan on Sunday afternoon. His next 2 scan will be on Monday afternoon and evening. Then on Tuesday he will head to Detroit for his appointment with Dr. Ali before coming home. Tom will be handling this trip by himself. I am glad that he is bringing his laptop so that we can stay connected.
This will be Tom's first scans since going on the drug. I am curious (and maybe a little anxious) to hear what the results are and to find out how the drug is working. Tom continues to fight his nausea and soreness of feet. He is eating better since the dosage reduction but is not able to eat everything he would like. His fatigue is a struggle, especially since going back to work. However, he is determined to keep living life.
This weekend I will keep asking for God's guidance in our lives. My prayers will not cease.
"But I keep right on praying to you, Lord. For now is the time-you are bending down to hear!" Psalms 69:13
On Sunday Tom is heading to West Bloomfield for 2 fun filled days of scans. Because of the medication they give to him before & during the scan they have to be spaced out as to not effect the other scans. Tom will be having his first scan on Sunday afternoon. His next 2 scan will be on Monday afternoon and evening. Then on Tuesday he will head to Detroit for his appointment with Dr. Ali before coming home. Tom will be handling this trip by himself. I am glad that he is bringing his laptop so that we can stay connected.
This will be Tom's first scans since going on the drug. I am curious (and maybe a little anxious) to hear what the results are and to find out how the drug is working. Tom continues to fight his nausea and soreness of feet. He is eating better since the dosage reduction but is not able to eat everything he would like. His fatigue is a struggle, especially since going back to work. However, he is determined to keep living life.
This weekend I will keep asking for God's guidance in our lives. My prayers will not cease.
"But I keep right on praying to you, Lord. For now is the time-you are bending down to hear!" Psalms 69:13
Tuesday, August 24, 2010
Travels
Monday night was our last meeting for Relay for Life. It put us on the road about 8:00 pm and our first time taking I-94 towards Detroit. The change of scenery was nice and I knew we would end up in D-town late so I called ahead to let them know we would arrive around 10:30 or so....Or so was more like it! I set the GPS to head to HFH, but not the one in Detroit, rather West Bloomfield. As we were heading towards the end of our destination I was looking out the window and telling Tom how familiar this area looked. We recognized the highway and streets and then I realized we were heading to the wrong destination. We were about 1/2 hour out of our way. Tom was very good though not happy about driving through downtown. He now knows where all the gentlemen clubs are in Detroit.
His appointment was bright and early the next morning so we got up, went down to the hospital's cafeteria for breakfast. We met with Dr. Ali who was pleased with all of Tom's levels and has decided to put Tom back on the Chemo at a reduced rate. We had to wait for all of Tom's labs to be processed before the pills could be administered. We had most of the results back within an hour except one. Three hours later we finally got the last one and Tom was ready to get home.
We were supposed to be out of the room by noon, but we were a little late and the staff was wonderful about it. There guest housing are 1 and 2 bedroom apartments on the 6th floor of a 22 story building on the hospital grounds. We are still very impressed with this hospital. I couldn't help but think if Tom does need surgery down the road, I'll be very comfortable staying at the hospital in these apartments. I made sure the GPS was properly programmed to take us home and nowhere else; only to realize 10 miles down the road that I had left a couple items in the room and we had to turn around to go back to get them! I am not sure if I will be invited to go with Tom again :)
Tom has asked his doctor to clear him to return to work after Labor Day weekend. He has asked to change his schedule to Friday-Sunday nights so that he will not need to take any further time off of work for his trips to Detroit. I am not sure if Tom feels well enough to return to work or is just worried about finances. I hope he does not try to over do it.
I wanted to share with you again some of my readings from my morning devotion (thanks again for the book Mom Andrews)
There is nothing but God's grace. We walk upon it; we breath it; we live and die by it; it makes the nails and axles of the Universe.
by Robert Louis Stevenson
His appointment was bright and early the next morning so we got up, went down to the hospital's cafeteria for breakfast. We met with Dr. Ali who was pleased with all of Tom's levels and has decided to put Tom back on the Chemo at a reduced rate. We had to wait for all of Tom's labs to be processed before the pills could be administered. We had most of the results back within an hour except one. Three hours later we finally got the last one and Tom was ready to get home.
We were supposed to be out of the room by noon, but we were a little late and the staff was wonderful about it. There guest housing are 1 and 2 bedroom apartments on the 6th floor of a 22 story building on the hospital grounds. We are still very impressed with this hospital. I couldn't help but think if Tom does need surgery down the road, I'll be very comfortable staying at the hospital in these apartments. I made sure the GPS was properly programmed to take us home and nowhere else; only to realize 10 miles down the road that I had left a couple items in the room and we had to turn around to go back to get them! I am not sure if I will be invited to go with Tom again :)
Tom has asked his doctor to clear him to return to work after Labor Day weekend. He has asked to change his schedule to Friday-Sunday nights so that he will not need to take any further time off of work for his trips to Detroit. I am not sure if Tom feels well enough to return to work or is just worried about finances. I hope he does not try to over do it.
I wanted to share with you again some of my readings from my morning devotion (thanks again for the book Mom Andrews)
There is nothing but God's grace. We walk upon it; we breath it; we live and die by it; it makes the nails and axles of the Universe.
by Robert Louis Stevenson
Tuesday, August 17, 2010
Normal
I just wanted to share a few things this week about what's going on at the Andrews' household. On Friday, we were in Hastings, MI for their annual Relay for Life event. It was a hot one and I think we were drenched about 2 minutes after getting out of the van! We had 10 walkers during this event with 5 of us staying the entire duration. Our walkers were awesome and dedicated. I don't think that we had more than a few minutes that someone was not walking the track. A few dedicated (crazy) walkers tracked over 20 miles. I think 28 miles was the top team member's achievement. Great job Martin!!!
The Survivor dinner was good and they had each Survivor give a sash to one Care Giver. The speech that was given before the walk is that the survivors could not do this alone. The music they played was "Wind Beneath My Wings" by Bette Midler. It was powerful and I had to make a huge effort not to cry the whole lap. The event hit to home when one of our friends from another team came over to tell Tom that a fellow friend/fire fighter lost his life to cancer during the night. They had a silent lap in his honor & I don't think there was a dry eye at the park. At the end of the event they handed out the awards. Team Sleepwalkers received 2 awards: Third place for On Line Donations & Second place for highest overall donations for a first year team. Way to go team!
It took us the rest of the weekend to recover from this event. I could not walk up/down the stairs and putting on shoes was not an option until Monday when it was required. I was so proud of Tom for being there and participating the whole time. Tom walked 18 miles himself.
The good new is that as of this weekend, Tom is able to eat like normal. He even drank a pop this week! We believe this will be short lived as Tuesday he will head back to HFH to start treatment again at a lower dosage.
I just wanted to say "Thank You" to all who helped with our event in anyway.
THANK YOU :)
The Survivor dinner was good and they had each Survivor give a sash to one Care Giver. The speech that was given before the walk is that the survivors could not do this alone. The music they played was "Wind Beneath My Wings" by Bette Midler. It was powerful and I had to make a huge effort not to cry the whole lap. The event hit to home when one of our friends from another team came over to tell Tom that a fellow friend/fire fighter lost his life to cancer during the night. They had a silent lap in his honor & I don't think there was a dry eye at the park. At the end of the event they handed out the awards. Team Sleepwalkers received 2 awards: Third place for On Line Donations & Second place for highest overall donations for a first year team. Way to go team!
It took us the rest of the weekend to recover from this event. I could not walk up/down the stairs and putting on shoes was not an option until Monday when it was required. I was so proud of Tom for being there and participating the whole time. Tom walked 18 miles himself.
The good new is that as of this weekend, Tom is able to eat like normal. He even drank a pop this week! We believe this will be short lived as Tuesday he will head back to HFH to start treatment again at a lower dosage.
I just wanted to say "Thank You" to all who helped with our event in anyway.
THANK YOU :)
Wednesday, August 11, 2010
Timeout
Tom and Kyle headed out the door at 7:00 this morning to head to HFH. Tom had some blood work done & talked with the clinical nurse. It was decided that Tom will be taken off the drug for 2 weeks because of his side effects. In two weeks, on August 24 Tom will head back in for his Dr. appointment and 4 hour visit. At that time Tom will resume taking the drug but at a lower dose.
Tonight when Tom came home he received a call from his primary doctor checking up on him. I am glad that he has a doctor that is very engaged in Tom's treatment. Tom also received his calcitonin level from his last blood work here on the west side and his level is 785. It is up a little bit, but still way down from the start of this program.
This weekend we will be involved in the Relay for Life 24 hour walk. A friend from my work, whose husband is a Throat Cancer patient at U of M, will be joining us for a little while. It was funny to find out that her daughter is in charge of the event. It truly is a small world! I told Tom to just show up & not worry about walking the trail, but you all know how well he listens to me ;) Thank you to all who were involved in our first campaign & to those who donated. We have raised $2,929.00. It was far from our first thought of setting a goal of $1,000.
THANK YOU THANK YOU THANK YOU!!!!!
Each morning when I get up for work after my little workout I do a devotional. I have decided to share a little of my writing:
My God I say to you:
Please help us feel Your love
Shinning down deeply from above
Show us the way, the path we shall follow
Live our lives to the brim, do not leave us hollow
Fill our hearts with compassion, taught by your son
Living life to the fullest, until our days are done
Lord, only you know the path we shall take
Daily give us mercy for all our our sake
Grace & mercy pour out from you
We receive it every breath, all the day through
Your humble servant is here today
To proclaim your words & silently pray
That you protect my loved ones & help them now
They will turn to you, trusting you somehow
I proclaim my trust in You, My Lord
Send down your spirit like a sword
Remind us that Jesus is the way
As I remember this early in the morning of everyday
Tonight when Tom came home he received a call from his primary doctor checking up on him. I am glad that he has a doctor that is very engaged in Tom's treatment. Tom also received his calcitonin level from his last blood work here on the west side and his level is 785. It is up a little bit, but still way down from the start of this program.
This weekend we will be involved in the Relay for Life 24 hour walk. A friend from my work, whose husband is a Throat Cancer patient at U of M, will be joining us for a little while. It was funny to find out that her daughter is in charge of the event. It truly is a small world! I told Tom to just show up & not worry about walking the trail, but you all know how well he listens to me ;) Thank you to all who were involved in our first campaign & to those who donated. We have raised $2,929.00. It was far from our first thought of setting a goal of $1,000.
THANK YOU THANK YOU THANK YOU!!!!!
Each morning when I get up for work after my little workout I do a devotional. I have decided to share a little of my writing:
My God I say to you:
Please help us feel Your love
Shinning down deeply from above
Show us the way, the path we shall follow
Live our lives to the brim, do not leave us hollow
Fill our hearts with compassion, taught by your son
Living life to the fullest, until our days are done
Lord, only you know the path we shall take
Daily give us mercy for all our our sake
Grace & mercy pour out from you
We receive it every breath, all the day through
Your humble servant is here today
To proclaim your words & silently pray
That you protect my loved ones & help them now
They will turn to you, trusting you somehow
I proclaim my trust in You, My Lord
Send down your spirit like a sword
Remind us that Jesus is the way
As I remember this early in the morning of everyday
Tuesday, July 27, 2010
All Day
Tommy actually got up before I did today. He was on the road by 5:00 am and returned home around 8:30 pm. Thanks to his cousin, Martin, for taking the day to spend with Tom. I am so glad that Tom did not have to go alone to the other side of the state.
Tom met with the doctor first thing. They talked about the side effects & reducing the dosage. Tom is currently the only patient in the study who is receiving the full dose. Tom's side effects are boarder line from having to be reduced. They assured Tom that patients are still having good results with reduced doses. You know my husband and how stubborn he is! Tom was reminded not to be a hero and be honest about all the severity of the side effects as their is a potential for liver damage. Tom has completed cycle 1 of the study and the end of the 8 hour days in Detroit. Cycle 2 reduces his stay to 4 hours per visit. Tom was not able to start the program first thing because his potassium levels were low. This is a direct result because of the change of Tom's diet and lack of solid foods.
Tom was able to meet another MTC (medullary thyroid cancer) patient that is currently participating in the study. Tom really enjoyed meeting this person and talking about their experiences. Tom came home uplifted and thankful that he was able to spend some time with this person.
Last week when Tom had his blood drawn from the West side, they also took his calcitonin level. All the labs came back in the normal range, including his platelets. I could not believe the Calcitonin level and had to call the PCP's office to make sure I was not misreading it. The level is now at 543. Tom's level at the start of this study was 1306. All I could think about is that back at U of M they mentioned the importance of this level. We are taking this as good news!
In my daily devotions I have read this and wanted to share it with you:
Confidence is not based on wishful thinking, but in knowing that God is in control.
Psalms 27:13 "I am still confident of this: I will see the goodness of the Lord in the land of the living." NTV
Tom met with the doctor first thing. They talked about the side effects & reducing the dosage. Tom is currently the only patient in the study who is receiving the full dose. Tom's side effects are boarder line from having to be reduced. They assured Tom that patients are still having good results with reduced doses. You know my husband and how stubborn he is! Tom was reminded not to be a hero and be honest about all the severity of the side effects as their is a potential for liver damage. Tom has completed cycle 1 of the study and the end of the 8 hour days in Detroit. Cycle 2 reduces his stay to 4 hours per visit. Tom was not able to start the program first thing because his potassium levels were low. This is a direct result because of the change of Tom's diet and lack of solid foods.
Tom was able to meet another MTC (medullary thyroid cancer) patient that is currently participating in the study. Tom really enjoyed meeting this person and talking about their experiences. Tom came home uplifted and thankful that he was able to spend some time with this person.
Last week when Tom had his blood drawn from the West side, they also took his calcitonin level. All the labs came back in the normal range, including his platelets. I could not believe the Calcitonin level and had to call the PCP's office to make sure I was not misreading it. The level is now at 543. Tom's level at the start of this study was 1306. All I could think about is that back at U of M they mentioned the importance of this level. We are taking this as good news!
In my daily devotions I have read this and wanted to share it with you:
Confidence is not based on wishful thinking, but in knowing that God is in control.
Psalms 27:13 "I am still confident of this: I will see the goodness of the Lord in the land of the living." NTV
Sunday, July 18, 2010
Chemo
This week I have been able to spend time with my best friend. We've been to both sides of the state combining good memories with the medical and keep Tom focused on the fun things in life.
On Wednesday Tom went to Henry Ford Hospital. I was able to accompany him and meet 2 of the main care takers. The team went over the side effects again with Tom and they were able to give him a prescription to help with his pain. They very carefully celebrated with Tom that he has these side effects while explaining to me that they believe he must be on the chemo and not the placebo. As we were leaving I had to laugh that they had a newbie taking Tom's blood, with his permission. Tom showed him which were the best veins for the draw (my medical expert!) . The chemo is starting to wear Tom down and the effects are taking their toll. It was explained that his dose could be reduced if the side effects became too much for him to bear. On the way home we made a stop in Lasing to watch Sammy Hager perform.
Thursday we received a call from HFH stating that Dr. Ali checked over his blood work and found that his platelets were a little low. Dr. Ali said the Tom was the first patient to have this reaction from the meds and requested that Tom's PCP order another blood draw for them so that Tom did not have to drive all the way back to Detroit. Friday morning he headed to Spectrum Health for his draw and we are awaiting the results this week from his doctor. On Friday night we headed down to my brother's house to do the annual Venetian Festival with him and the Diva a.k.a Robin, his wife. Tom did pretty well as we tried to make sure he was not pushing himself too hard during our visit. Tom is learning to slow down and this was a nice quiet get away for us to spend quality time together.
Tom's next trip to HFH is Tuesday, July 27. This will once again be an all day trip with many blood draws and E.K.G.'s Thank God that Tom has such a good attitude during this whole process. I am grateful for so many caring people and the support we are getting from so many.
"Always be joyful. Always keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus." 1 Thessalonians: 17-18
On Wednesday Tom went to Henry Ford Hospital. I was able to accompany him and meet 2 of the main care takers. The team went over the side effects again with Tom and they were able to give him a prescription to help with his pain. They very carefully celebrated with Tom that he has these side effects while explaining to me that they believe he must be on the chemo and not the placebo. As we were leaving I had to laugh that they had a newbie taking Tom's blood, with his permission. Tom showed him which were the best veins for the draw (my medical expert!) . The chemo is starting to wear Tom down and the effects are taking their toll. It was explained that his dose could be reduced if the side effects became too much for him to bear. On the way home we made a stop in Lasing to watch Sammy Hager perform.
Thursday we received a call from HFH stating that Dr. Ali checked over his blood work and found that his platelets were a little low. Dr. Ali said the Tom was the first patient to have this reaction from the meds and requested that Tom's PCP order another blood draw for them so that Tom did not have to drive all the way back to Detroit. Friday morning he headed to Spectrum Health for his draw and we are awaiting the results this week from his doctor. On Friday night we headed down to my brother's house to do the annual Venetian Festival with him and the Diva a.k.a Robin, his wife. Tom did pretty well as we tried to make sure he was not pushing himself too hard during our visit. Tom is learning to slow down and this was a nice quiet get away for us to spend quality time together.
Tom's next trip to HFH is Tuesday, July 27. This will once again be an all day trip with many blood draws and E.K.G.'s Thank God that Tom has such a good attitude during this whole process. I am grateful for so many caring people and the support we are getting from so many.
"Always be joyful. Always keep on praying. No matter what happens, always be thankful, for this is God's will for you who belong to Christ Jesus." 1 Thessalonians: 17-18
Thursday, July 8, 2010
XL-184
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
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
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."
Sunday, April 18, 2010
May or May not
We are reminded that we live in Michigan. One day it is a perfect sunny, Michigan summer day, and then we are back to the Spring type weather. I love this time of year where we get a taste of the beautiful weather to come! The kids are doing well and I am counting down my couple of classes left.
This week I talked with Tom's Primary Doctor's office. They have not received any notification from Karmanos. I told them of Tom's situation and how he has not been able to start the trial as of yet. I then called Karmanos to ensure that Tom's reports are forwarded to his PCP. We talked about the trial and that it will still be a few weeks before the trial is opened up. It was explained to me that the Committees get together and have to approve the process before it goes forward. Once they get this through the number of committees it opens up and goes rather quickly. It will probably be May before Tom knows any dates as of the start of this clinical trial. I had to chuckle on Friday when Tom lovingly accused me of not being able to stay out of his care and then said a heartfelt "Thank you".
Tom has kept himself, and others, busy with the Relay for Life event. I believe it has been good for Tom to have another focus at this time. The Euchre tournament will be upon us before we know it and Tom has been at the forefront of this fundraiser. I know that he has poured his heart and soul into this. I also have to mention how proud I am of our little girl. Katie's best friend's mother had been diagnosed with cancer last October. These two girls walked around our neighborhood collecting for cancer. Together they raised $189.00! Wow, that is amazing.
I once again will finish with something that touches my heart. I know that life has its ups and downs. There is no guarantee that it will be prosperous, full of fun, or pain free. I also know that times are hard but God is good. There is a reason why our family is here today and sharing with you our experiences. I hope this encourages you let those you love "know it"!
1 John 3:11 "for the message to us from the beginning has been that we should love one another."
This week I talked with Tom's Primary Doctor's office. They have not received any notification from Karmanos. I told them of Tom's situation and how he has not been able to start the trial as of yet. I then called Karmanos to ensure that Tom's reports are forwarded to his PCP. We talked about the trial and that it will still be a few weeks before the trial is opened up. It was explained to me that the Committees get together and have to approve the process before it goes forward. Once they get this through the number of committees it opens up and goes rather quickly. It will probably be May before Tom knows any dates as of the start of this clinical trial. I had to chuckle on Friday when Tom lovingly accused me of not being able to stay out of his care and then said a heartfelt "Thank you".
Tom has kept himself, and others, busy with the Relay for Life event. I believe it has been good for Tom to have another focus at this time. The Euchre tournament will be upon us before we know it and Tom has been at the forefront of this fundraiser. I know that he has poured his heart and soul into this. I also have to mention how proud I am of our little girl. Katie's best friend's mother had been diagnosed with cancer last October. These two girls walked around our neighborhood collecting for cancer. Together they raised $189.00! Wow, that is amazing.
I once again will finish with something that touches my heart. I know that life has its ups and downs. There is no guarantee that it will be prosperous, full of fun, or pain free. I also know that times are hard but God is good. There is a reason why our family is here today and sharing with you our experiences. I hope this encourages you let those you love "know it"!
1 John 3:11 "for the message to us from the beginning has been that we should love one another."
Tuesday, March 30, 2010
Few Week Notice
What a beautiful day! The sun is shining and the temps are on the rise. The kids have a few days of school before their Spring Break. I will enjoy having another Saturday school free also.
Tom received a call today from Karmanos Cancer Center. His paperwork had been approved by our insurance company. However, the manufacturer has made changes to the drug. This is delaying the trials by a couple of weeks a least. Tom's appointment has been cancelled and they will call when the new medication and approvals have been finalized. Needless to say that Tom is very disappointed about the set back. With his type of cancer and there being no way to stop it from growing timing is of the essence.
This is another blow to our long winding process. Please pray that the trial will start in a timely manner. Tom feels the need to keep moving forward and this stall is not good for his spirits.
Psalms 123:3 "Have mercy of us, Lord, have mercy."
Tom received a call today from Karmanos Cancer Center. His paperwork had been approved by our insurance company. However, the manufacturer has made changes to the drug. This is delaying the trials by a couple of weeks a least. Tom's appointment has been cancelled and they will call when the new medication and approvals have been finalized. Needless to say that Tom is very disappointed about the set back. With his type of cancer and there being no way to stop it from growing timing is of the essence.
This is another blow to our long winding process. Please pray that the trial will start in a timely manner. Tom feels the need to keep moving forward and this stall is not good for his spirits.
Psalms 123:3 "Have mercy of us, Lord, have mercy."
Monday, March 22, 2010
Focus
It's already the end of the month. I can't believe how times flies. I looked at my last post and realized it had been a while. It felt like I just did it yesterday! The boys school reports were good. Kyle missed the honor roll by 1/2 a grade in one class. He thought he had made it so needless to say that he was disappointed. Cody and Katelynn both had improvements over last Tri's grades. Tom and I are pleased with all their reports.
Last weekend we did a crazy thing. We picked out puppies!!! I don't think it was all crazy, maybe getting 2 could seem that way to some. Animals are just a part of our family. As my sister reminded me "You wrote that you wanted a dog every year on your Christmas wish list!" It has been a good focus for our children to see "Life" and to have some laughter again in our home instead of the heaviness that has been around since the beginning of the year. Anyway, we are now enjoying the company of Brooklyn and Savanah, picture included.
Tom is waiting for Karmanos to let him know that he is approved for the trial. He is hoping to hear from them yet this week. Tom is enjoying working his 3 days and has cut down on his other duties for now. I think that he has been energized by this slower schedule and I hope that he decides to take a breather more often. Tom is really focused on the Relay for Life and I think that it will be a fun event this summer. So far we have 12 walkers and Tom is hopeful that we will have 15 this year. You know Tom and planning. He is the man for the job!
As my favorite holiday is approaching, I reflect on how my life/year has been going. What has been my focus? What do I want to change yet this year or improve? Am I following the path that I was set upon? We may not always have a smooth straight path but I think that it's important to ask if we are making the best of where we are. I know that looking back I can always do things differently. I just pray that I'm doing things right here and now while I have the chance to.
Psalm 139:1-5 "O Lord, you have examined my heart and know everything about me. You know when I sit or stand. When far away you know my every thought. You chart the path ahead of me, and tell me where to stop and rest. Every moment, you know where I am. You know what I am going to say before I even say it. You both precede and follow me, and place your hand of blessing on my head."
Last weekend we did a crazy thing. We picked out puppies!!! I don't think it was all crazy, maybe getting 2 could seem that way to some. Animals are just a part of our family. As my sister reminded me "You wrote that you wanted a dog every year on your Christmas wish list!" It has been a good focus for our children to see "Life" and to have some laughter again in our home instead of the heaviness that has been around since the beginning of the year. Anyway, we are now enjoying the company of Brooklyn and Savanah, picture included.
Tom is waiting for Karmanos to let him know that he is approved for the trial. He is hoping to hear from them yet this week. Tom is enjoying working his 3 days and has cut down on his other duties for now. I think that he has been energized by this slower schedule and I hope that he decides to take a breather more often. Tom is really focused on the Relay for Life and I think that it will be a fun event this summer. So far we have 12 walkers and Tom is hopeful that we will have 15 this year. You know Tom and planning. He is the man for the job!
As my favorite holiday is approaching, I reflect on how my life/year has been going. What has been my focus? What do I want to change yet this year or improve? Am I following the path that I was set upon? We may not always have a smooth straight path but I think that it's important to ask if we are making the best of where we are. I know that looking back I can always do things differently. I just pray that I'm doing things right here and now while I have the chance to.
Psalm 139:1-5 "O Lord, you have examined my heart and know everything about me. You know when I sit or stand. When far away you know my every thought. You chart the path ahead of me, and tell me where to stop and rest. Every moment, you know where I am. You know what I am going to say before I even say it. You both precede and follow me, and place your hand of blessing on my head."
Saturday, March 6, 2010
The New Team of Doctors
Loving the sunshine today! Our family is ready for the Spring weather. It's time for kids to get outside to enjoy the world. The boys ended their trimesters and were pretty happy with their exams and final grades. Time will tell how they did in the next week as we get their report cards.
Friday Tom went back to the Karmanos Cancer Center. Tom met with Dr. Ammar Sukari and his team that will be working with him going forward. Tom will be entering a Phase II trial with the drug Paxopanib. This drug has shown to be safe and has had positive results in slowing down Advanced Thyroid Cancer. Over the next few weeks it will be all paperwork & approval processes. Tom will head back to Detroit on Friday, April 2 to start treatments. The drug is in a pill form that Tom will take 2 times a day. His vitals will have to be monitored daily. I am sure he can find an EMT to handle that. For the first 30 days on the drug Tom will have to make several trips to Detroit until they are comfortable with how Tom reacts and how severe the side effects are on him. Once the doctors are comfortable, Tom will travel to Detroit every 28 days. He will spend the whole day getting CT's blood work, etc.
While Tom was making his trip, I received a call from his PCP. His latest blood work and CT scan results were in. Again there has been an increase in Calcitonin (1,206) and CEA (17.2, prior it was 12.6). The report from the CT scan shows no increase in size of the legions in the liver, spine and lungs. It continues to be the case that while Tom's cancer has spread, it is a very slow moving cancer. This combined with the new drug gives us hope.
Jeremiah 17:7-8 "But blessed is the man who trusts in the Lord and has made the Lord his hope and confidence. He is like a tree planted along a riverbank, with its roots reaching deep into the water - a tree not bothered by the heat nor worried by long months of drought. Its leaves stay green and it goes right on producing all its luscious fruit."
Friday Tom went back to the Karmanos Cancer Center. Tom met with Dr. Ammar Sukari and his team that will be working with him going forward. Tom will be entering a Phase II trial with the drug Paxopanib. This drug has shown to be safe and has had positive results in slowing down Advanced Thyroid Cancer. Over the next few weeks it will be all paperwork & approval processes. Tom will head back to Detroit on Friday, April 2 to start treatments. The drug is in a pill form that Tom will take 2 times a day. His vitals will have to be monitored daily. I am sure he can find an EMT to handle that. For the first 30 days on the drug Tom will have to make several trips to Detroit until they are comfortable with how Tom reacts and how severe the side effects are on him. Once the doctors are comfortable, Tom will travel to Detroit every 28 days. He will spend the whole day getting CT's blood work, etc.
While Tom was making his trip, I received a call from his PCP. His latest blood work and CT scan results were in. Again there has been an increase in Calcitonin (1,206) and CEA (17.2, prior it was 12.6). The report from the CT scan shows no increase in size of the legions in the liver, spine and lungs. It continues to be the case that while Tom's cancer has spread, it is a very slow moving cancer. This combined with the new drug gives us hope.
Jeremiah 17:7-8 "But blessed is the man who trusts in the Lord and has made the Lord his hope and confidence. He is like a tree planted along a riverbank, with its roots reaching deep into the water - a tree not bothered by the heat nor worried by long months of drought. Its leaves stay green and it goes right on producing all its luscious fruit."
Friday, February 26, 2010
Trip to Detroit
Today Tom made the journey over to Detroit through icy roads, past jack knifed semi's and highway closures to the Karmanos Cancer Institute. A big thanks to my brother-in-law Dale for taking my hubby to Detroit & back safely. Tom was given a tour of the facility and spent a couple of hours talking with doctors about his case. For the first time in over a year we have a game plan. We have decided to move all of Tom's care to this center. Tom has qualified for a Phase II Clinical Trial with the drug adriamycin www.lymphomainfo.net/therapy/drugs/adriamycin.html
They have ordered another CT scan. If the second CT confirms cancer in the liver, then we now have options and treatment plans. This could include biopsy, surgery, chemo, and other forms of treatment only offered at the Karmanos Center.
Tom had another blood draw before he left the center today. He will have the CT here in Grand Rapids. This will be the last procedure performed outside of the cancer center. Tom's next appointment is Friday, March 5 @ 11:00 am where he will meet with Dr. Sukari, Head & Neck Oncology, Assistant Professor Wayne State University.
We know that this is still an uphill battle. With Tom's treatments moving to Detroit, I must deal with the fact that I will no longer be able to be by his side for every appointment as I have done in the past. However, I know it's worth it because Tom has a team of physician that have given us options and most importantly hope.
They have ordered another CT scan. If the second CT confirms cancer in the liver, then we now have options and treatment plans. This could include biopsy, surgery, chemo, and other forms of treatment only offered at the Karmanos Center.
Tom had another blood draw before he left the center today. He will have the CT here in Grand Rapids. This will be the last procedure performed outside of the cancer center. Tom's next appointment is Friday, March 5 @ 11:00 am where he will meet with Dr. Sukari, Head & Neck Oncology, Assistant Professor Wayne State University.
We know that this is still an uphill battle. With Tom's treatments moving to Detroit, I must deal with the fact that I will no longer be able to be by his side for every appointment as I have done in the past. However, I know it's worth it because Tom has a team of physician that have given us options and most importantly hope.
Thursday, February 18, 2010
Plan
It has been busy in the Andrews' household and I think that is a good thing. Last Saturday Tom and I were treated to a wonderful Valentine's dinner with friends It was great to see kids working so hard to raise money for a mission trip and the company that we had put our hearts on a lighter mood for the weekend. Tonight the kids are on their first evening of Mid Winter Break. They are relishing no school on Friday and Monday. However, I have changes coming up this weekend. My last day is Friday for my current employer, another grueling test on Saturday, and on Monday I start 2 days orientation for my new job. Changes are not easy for me and this is already a challenging time in life, but it will help bring a better life for the family.
Tom has made an appointment and gotten material from the Karmanos Cancer Center in Detroit. He has a meet and greet on Friday, February 26. At the first meeting Tom believes that they will do an exam and go over his medical history. A plan will be put together for his 2nd visit and then it will be implemented. His brother-in-law is taking Tom to Detroit and I am grateful that Tom does not have to make this trip alone. Tomorrow Tom will be getting his monthly blood drawn and he should get the latest results before his Detroit visit.
Last night Tom and I attended our first meeting for the Relay for Life. We are gearing up and getting ready for the walk in August in Barry County. The committee seemed to be organized and the people that attended were a fun bunch! I am looking forward to connecting with others that have a same life experiences that our family is going through. Our family picked the name of Sleep Walkers as it is fitting for the 24 hour walk as well as Tom's profession. Thank you to those who have already joined us and/or donated to our cause. We are overwhelmed again by the generosity of others.
Last Sunday Tom and I stood up for a prayer at church and were surrounded with people praying with and for us; I could not help but thank God that we are not alone in the fight. I know that people we have never met have been praying on our behalf and that is more than the mind can comprehend. I can't begin to tell each of you how much your words, cards, and gifts have meant to us. Thanks to all of you and may you in turn also be rewarded for your generosity.
Psalms 65:3-3 "And because you answer prayer, all mankind will come to you with their requests. Though sins fill our hearts, you forgive them all."
Tom has made an appointment and gotten material from the Karmanos Cancer Center in Detroit. He has a meet and greet on Friday, February 26. At the first meeting Tom believes that they will do an exam and go over his medical history. A plan will be put together for his 2nd visit and then it will be implemented. His brother-in-law is taking Tom to Detroit and I am grateful that Tom does not have to make this trip alone. Tomorrow Tom will be getting his monthly blood drawn and he should get the latest results before his Detroit visit.
Last night Tom and I attended our first meeting for the Relay for Life. We are gearing up and getting ready for the walk in August in Barry County. The committee seemed to be organized and the people that attended were a fun bunch! I am looking forward to connecting with others that have a same life experiences that our family is going through. Our family picked the name of Sleep Walkers as it is fitting for the 24 hour walk as well as Tom's profession. Thank you to those who have already joined us and/or donated to our cause. We are overwhelmed again by the generosity of others.
Last Sunday Tom and I stood up for a prayer at church and were surrounded with people praying with and for us; I could not help but thank God that we are not alone in the fight. I know that people we have never met have been praying on our behalf and that is more than the mind can comprehend. I can't begin to tell each of you how much your words, cards, and gifts have meant to us. Thanks to all of you and may you in turn also be rewarded for your generosity.
Psalms 65:3-3 "And because you answer prayer, all mankind will come to you with their requests. Though sins fill our hearts, you forgive them all."
Thursday, February 11, 2010
Cancer Sucks
We met with the Oncologist at the U of M. We went over the results of the CT scan. He confirmed our fears that they found 3 lesions in the liver. The biggest measured 11mm. There is also a lesion on Tom's spine that was not measurable. At this point they can't do Chemotherapy, Radiation, or Surgery. We have the advantage that this cancer is not aggressive. However the calcitonin levels are climbing at an alarming rate. His recommendation is that we now go to the Karmanos Cancer Center in Detroit. He said that they have a clinical trial with a new drug that might slow down the spread of Tom's cancer. We talked quite a bit about "quality of life" and focusing on family. We discussed how there is no cure and really no treatment to stop the spread of this type of cancer. The plan is to focus on slowing down the rate to which the cancer is spreading instead of trying to eliminate it. We are not sure how often Tom will have to be in Detroit or how severe the side effect of these drugs will be on him. Tom will be calling this center to make an appointment and talk with the doctors to see if he qualifies to participate in a study. The pharmacy within our house continues to grow as the doctor has put Tom on yet another drug. Tom calls this one his happy pill. I expect him to be bouncing off the wall sometime soon.
Tom will not give up the fight but we have to face reality. The hardest road is yet ahead of us. We need to make several important decision in the next few weeks. Tom needs to make family time his top priority. As Tom keeps saying "Faith, Hope, Love".
Tom will not give up the fight but we have to face reality. The hardest road is yet ahead of us. We need to make several important decision in the next few weeks. Tom needs to make family time his top priority. As Tom keeps saying "Faith, Hope, Love".
Monday, February 1, 2010
The Call
Mondays are always hard to get back into the swing of things. I was feeling pretty good about it until I got home from work. Tom had me accompany me as he got fitted for a suit for this weekends Father/Daughter dance. On the way there he told me that Dr. Divic called him today. You know it's never good when the doctor tells you to get him no matter what he's doing.
Tom's Calcitonin is now 1,000 at this point which is a jump of 333. We can now know why as the CT scan has found tumors in his liver and on his spine. At this point we can only speculate what will be done. Dr. Divic did state that this is not operable. Dr. Divic is optimistic that this cancer has not turned aggressive and that we have caught it in such a minute stage. He was thinking there is a possibility of Chemo followed by Radiation. I am convinced that Chemo is not an option for this type of cancer. February 11 we will get the final answer from Dr. Worden at the U of M.
Tom is being so brave. He was trying to joke with me tonight between my tears. God has given him a unique sense of humor! He is being so tough for my sake. We have decided to talk with the doctors before we tell the kids what is going on. They just need to be kids right now!
All we can ask for is prayers for guidance once again from the doctors. I am so glad that we have an established Thyroid Cancer Oncologist.
Psalms 57:1-3 "O God, have pity, for I am trusting you! I will hide beneath the shadow of your wings until the storm is past. I will cry to the God of heaven who does such wonders for me. He will send down help from heaven to save me, because of his love and his faithfulness. He will rescue me from these liars who are so intent upon destroying me."
Tom's Calcitonin is now 1,000 at this point which is a jump of 333. We can now know why as the CT scan has found tumors in his liver and on his spine. At this point we can only speculate what will be done. Dr. Divic did state that this is not operable. Dr. Divic is optimistic that this cancer has not turned aggressive and that we have caught it in such a minute stage. He was thinking there is a possibility of Chemo followed by Radiation. I am convinced that Chemo is not an option for this type of cancer. February 11 we will get the final answer from Dr. Worden at the U of M.
Tom is being so brave. He was trying to joke with me tonight between my tears. God has given him a unique sense of humor! He is being so tough for my sake. We have decided to talk with the doctors before we tell the kids what is going on. They just need to be kids right now!
All we can ask for is prayers for guidance once again from the doctors. I am so glad that we have an established Thyroid Cancer Oncologist.
Psalms 57:1-3 "O God, have pity, for I am trusting you! I will hide beneath the shadow of your wings until the storm is past. I will cry to the God of heaven who does such wonders for me. He will send down help from heaven to save me, because of his love and his faithfulness. He will rescue me from these liars who are so intent upon destroying me."
Saturday, January 16, 2010
What a month
The sun was shinning this past week! No matter how cold it gets I always feel better when the sun is shining. The kids are back in the swing of school & homework. My class started today so I will be in there with them. Katie is starting her first basketball practice today. She is so excited about being able to play a 3 on 3 game! She also watched the high school cheer leading competition this week & came home very enthused and energized by it.
Tom had a busy week as well. He got his blood work done & is waiting for the results. His CT scan is scheduled for Friday, January 22 which give us a date night as this is not until 7:30 pm. He was also approved for the Genetics testing and will get that test done on Thursday, January 21st. Also on Thursday, he will see his primary doctor. We have Dr. Worden's appointment for Thursday, February 11. This is another afternoon appointment so we can make the trip in one day. Today we got a letter of approval for 2 trips to the U of M, consultations only. This has been a busy month and we are only 1/2 the way through!
It truly has been a long year and a half since I have felt so confident in those taking care of my loved one's health. I hope that we will continue to make head way with Tom's disease. I know that Tom is also relieved that we made the change. Thanks again for all the words of encouragement and the prayers that have been said on behalf of our family, not sure how we would make it through otherwise.
John 3:16 "For God so loved the word that he gave his only son so that whoever believes in him shall not perish but have eternal life."
Tom had a busy week as well. He got his blood work done & is waiting for the results. His CT scan is scheduled for Friday, January 22 which give us a date night as this is not until 7:30 pm. He was also approved for the Genetics testing and will get that test done on Thursday, January 21st. Also on Thursday, he will see his primary doctor. We have Dr. Worden's appointment for Thursday, February 11. This is another afternoon appointment so we can make the trip in one day. Today we got a letter of approval for 2 trips to the U of M, consultations only. This has been a busy month and we are only 1/2 the way through!
It truly has been a long year and a half since I have felt so confident in those taking care of my loved one's health. I hope that we will continue to make head way with Tom's disease. I know that Tom is also relieved that we made the change. Thanks again for all the words of encouragement and the prayers that have been said on behalf of our family, not sure how we would make it through otherwise.
John 3:16 "For God so loved the word that he gave his only son so that whoever believes in him shall not perish but have eternal life."
Wednesday, January 6, 2010
Moving to Ann Arbor
Not ready to put the house up for sale and move to Ann Arbor, but we will be moving Tom's health care to the U of M. Today we met with Dr. Worden. He is an Associate Professor in the Hematology/Oncology Department. We finally feel like we have an Oncologist on the same page with us. He was upfront and honest with the reality of Tom's disease. We discussed his approach to Tom's long term care which will include monthly visists to the U of M, increasing blood testing to every 30 days, and CT scans every other month. This plan is more aggressive than we had been doing for the past year. What really impressed us is his concern for Tom's current quality of life. He has ordered a full blood work up as he feels that Tom's current medications need to be adjusted. He has also put Tom on new medications (glad I got him the biggest pill box available) and ordered new/more physical therapy.
We talked about treatment plans once they are able to locate the cancer. He talked about an experimental chemo treatment being performed by a college at Wayne State University. He will also bring Tom's case up for review with the "Cancer Board" at the U of M where a group of Oncologist, Endocrinologist, and Radiologist will discuss the best approach to Toms care.
We feel that this is the right direction for us to take, as difficult as it may be. I will have to use my vacation time to accompany Tom on trips back and forth to Ann Arbor. We may have a struggle convincing the insurance company that we have a right to chose the doctor we want. This will more than likely mean more out of pocket expenses. We will continue through this hand in hand learning to lean on each other when times are difficult.
Psalms 18:30 "What a God he is! How perfect in every way! All his promises prove true. He is a shield for everyone who hides behind him."
We talked about treatment plans once they are able to locate the cancer. He talked about an experimental chemo treatment being performed by a college at Wayne State University. He will also bring Tom's case up for review with the "Cancer Board" at the U of M where a group of Oncologist, Endocrinologist, and Radiologist will discuss the best approach to Toms care.
We feel that this is the right direction for us to take, as difficult as it may be. I will have to use my vacation time to accompany Tom on trips back and forth to Ann Arbor. We may have a struggle convincing the insurance company that we have a right to chose the doctor we want. This will more than likely mean more out of pocket expenses. We will continue through this hand in hand learning to lean on each other when times are difficult.
Psalms 18:30 "What a God he is! How perfect in every way! All his promises prove true. He is a shield for everyone who hides behind him."
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