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
Tuesday, August 24, 2010
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
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