:) 2/26 update in OP -Update on my husband
Feb 1, 2015 0:41:15 GMT
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gajitldy, freecharlie, and 30 more like this
Post by jenjie on Feb 1, 2015 0:41:15 GMT
2/26 update!!! Email I sent to our church prayer chain:
Thank you all so much for continued prayer. We are back at Pennsylvania Hospital for another 4 days of chemo. It was made plain to us that if Fred wasn't responding to the chemo, he would be feeling worse pretty quickly.
Other than a cough that looks like it will be around awhile, he is feeling good! Some obvious symptoms have disappeared. His breathing has been good. His caregivers here are encouraged to see him doing so well.
So many of you prayed and fasted on our behalf, with the specific request that they would get it right the first time. This was especially important because they weren't quite sure what specific cancer he had when treatment began. Praise God it looks like they did indeed get it right the first time!
Fred will have a scan on March 9, which will give a clearer picture of what's happening.
The power of our prayers lies in the One who listens and answers. He is pleased when we bear one another's burdens, coming boldly before the throne of grace to find mercy and grace in our time of need.
Thank you more than words can say for interceding for us, and for drenching us in the love of Jesus.
***
2/16 - I have to start by saying thank you all so much for your kindness, your encouragement, your good wishes and prayers. we had our follow-up appt with the oncologist today. First of all, the scare with Fred's white blood count was no surprise to him. It was exactly as expected. Only we and our friend the PCP didn't know that! And his numbers are much better today, his immunity is considered out of danger zone. Whew!
Dr is very pleased with Fred's lungs. He told us today that at the hospital, the lungs were getting worse before his eyes! Today he is hopeful that if they are not improving, that at least it has stopped from getting worse. He was glad to see Fred feeling good.
We are hopeful that this means the cancer IS Responding to the chemo. If not, we are looking at a VERY short window. But this MAY mean we might get a few more years together.
Thanking God for a good day and asking for a whole bunch more.
***
2/15 - PVM warning. I don't know how to say this. The diagnosis came in on Tues morning. Both top pathologists separately came to the same conclusion. He has a rare type of sarcoma that tends not to respond to chemo. Please don't ask for the name or details. And I've already heard various suggestions. Unless God chooses to perform a miracle, we won't have many years left together even if it does respond to chemo. What we are telling people is that it's an aggressive cancer that requires aggressive treatment and aggressive prayer.
For now, he's feeling good. The procedure they did on his lung (pleurodesis) is working so far. His white blood cells are alarmingly low (500). we have a follow up appt tomorrow. They plan to do a scan after the second round of chemo to see how it's going. i had mentioned to a few people that we were praying that they choose the right chemo the first time. And not even being sure of what they we're dealing with, they gave him exactly what they would have had they known. (Dr didn't want to wait because he was trying to stop it from spreading.)
So Jen where is God in all of this? He's here. Although we didn't get the answer we want, he's here. Answers to prayers, his presence comforting, his grace equipping me. I am not a strong person. On the night my husband was having trouble with co2, I was very much aware of God's grace sustaining me, enabling me to stay level headed, in the spirit, and help my husband instead of falling apart. In the middle of all of that I felt we were SAFE because he were in his hands.
The future is a scary place for me right now. It looks very dark. I have a lot of worries. I'm praying for a miracle, understanding I may not get one. But I will trust him. Even if. because he is faithful.
Last year I spoke a message on Abundant Life. Jesus said "The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly." John 10:10 KJV. I started out by saying abundant life is not about having it all, doing it all and being it all.
As my message came to a close, I stated this - "Being fully persuaded that I am loved by God, knowing that I can trust him, that I’m called according to his purpose, that he empowers me to walk in his truth and equips me to multiply the love of Christ? That’s what abundant life looks like to me." Listening to my own message earlier this week, I realized that none of that has changed.
***
2/9 long update - My update is going to be a bit long. thank you all for prayers and kind words. We were supposed to go home today but we are here at the hospital til tomorrow night or Wednesday. We had some complications. Otherwise I think chemo would have been smooth sailing. He was surprised at how good he felt the first two days.
BUT the fluid on his lung is causing issues. They drained a liter on Friday. On Saturday he was really sleepy but as the day went on he got very anxious. He couldn't tell me what was bothering him but he became confused and disoriented. He was hyperventilating and even whistle breathing.
In the middle of the night when they checked his vitals, his oxygen saturation level was only 84%. It should be at least 94%. They did a chest X-ray and gave a Nebulizer treatment. In between all of this we were up every 10 mins (not even kidding) for him to pee because of the constant IV fluids. I think I got a half hour sleep that night.
Finally the nurse came in - woke me up! To say they were transferring us to special care unit. we first arrived, they said he was their sickest patient. I found out later that the only reason he was in that unit was because ICU was full, and he was receiving ICU quality care.
In the middle of all of this, Fred continued to say he wasn't having breathing problems and wasn't in any pain. He was upset that they wouldn't let him sleep AND "I just came to the hospital for chemo! Why are they doing all this other stuff to me?!" I went behind being very appreciative and trying to do damage control. He'll appreciate it once he's feeling better.
It was determined that the fluid buildup - part of which might have been from the 24/7 IV fluids - was not only affecting his oxygen but also causing co2 to build up. That's what was causing the confusion. I'm so glad because I was worried he would have this mental torture every time.
They stopped IV and started lasix to drain the fluids. He got a chest tube put in to keep it draining.
He's doing a lot better, the confusion is gone and he is back on the chemo ward. He's no longer critical praise God. We were both pretty crabby today but got over ourselves.
In other news, they still haven't been able to pinpoint the exact subtype of cancer. This is stumping them! They have it down to three, mostly two actually. They all have the same two base drugs and depending on what type it is they might add an additional drug or two. They started chemo with the two base drugs because they wanted to start right away to stop it from spreading.
The current plan is for us to go home tomorrow night or Wednesday. They are still monitoring his lungs. I'm not sure what happens next.
***
2/3 - Thank you all. Going to bed shortly but copy and pasting text I sent to family. Encouraged today. Very tired.
Outpatient 10:30 am thurs for chemo treatment, immediately followed by hospital admission. He will be there over the weekend and prob discharged Monday. We r starting immediately working on nutrition to build immunity.
between the two things they r determining, treatment is the same except possible addition of an extra drug. Dr was like a kid on Christmas morning when I gave him the packet from Virtua. TheY can run their own tests. They r going to go through it carefully tomorrow.
He said what fred has is very rare. That's why we got this guy, rare is what he deals with. Fred was topic of conference discussion this am.
***
This is an update to this thread:
2peasrefugees.boards.net/thread/15340/jan-update-op-on-mine
And this one:
2peasrefugees.boards.net/thread/16504/friend
The verdict is in. My husband has stage 4 cancer. It is some kind of sarcoma, they will know for sure exactly what type within the next few days. They had a difficult time figuring out what it was because the way it presented was rare.
We are now working with Penn Medicine in Philadelphia. Our doctor is the director of their sarcoma dept, director of the cancer hospital and one of the top in his specialty.
The plan is for dh to go to Penn as inpatient receiving chemo for 4 days, then home for 3 weeks, inpatient 4 days, home 3 weeks and so on. He expects that after one cycle of chemo they will know if it's helping at all. If not, they ditch it and try the next.
Dr believes he has had it for just 4 months, it is spreading rapidly. But he says the quicker is spreads the more susceptible it is to being destroyed.
We didn't ask to join this club and really don't want to learn this new language. But here we are. I don't know what this next season is going to look like. But I believe in a big God and have seen evidence of his personal care of us.
Thank you for your concern for me and mine.
Thank you all so much for continued prayer. We are back at Pennsylvania Hospital for another 4 days of chemo. It was made plain to us that if Fred wasn't responding to the chemo, he would be feeling worse pretty quickly.
Other than a cough that looks like it will be around awhile, he is feeling good! Some obvious symptoms have disappeared. His breathing has been good. His caregivers here are encouraged to see him doing so well.
So many of you prayed and fasted on our behalf, with the specific request that they would get it right the first time. This was especially important because they weren't quite sure what specific cancer he had when treatment began. Praise God it looks like they did indeed get it right the first time!
Fred will have a scan on March 9, which will give a clearer picture of what's happening.
The power of our prayers lies in the One who listens and answers. He is pleased when we bear one another's burdens, coming boldly before the throne of grace to find mercy and grace in our time of need.
Thank you more than words can say for interceding for us, and for drenching us in the love of Jesus.
***
2/16 - I have to start by saying thank you all so much for your kindness, your encouragement, your good wishes and prayers. we had our follow-up appt with the oncologist today. First of all, the scare with Fred's white blood count was no surprise to him. It was exactly as expected. Only we and our friend the PCP didn't know that! And his numbers are much better today, his immunity is considered out of danger zone. Whew!
Dr is very pleased with Fred's lungs. He told us today that at the hospital, the lungs were getting worse before his eyes! Today he is hopeful that if they are not improving, that at least it has stopped from getting worse. He was glad to see Fred feeling good.
We are hopeful that this means the cancer IS Responding to the chemo. If not, we are looking at a VERY short window. But this MAY mean we might get a few more years together.
Thanking God for a good day and asking for a whole bunch more.
***
2/15 - PVM warning. I don't know how to say this. The diagnosis came in on Tues morning. Both top pathologists separately came to the same conclusion. He has a rare type of sarcoma that tends not to respond to chemo. Please don't ask for the name or details. And I've already heard various suggestions. Unless God chooses to perform a miracle, we won't have many years left together even if it does respond to chemo. What we are telling people is that it's an aggressive cancer that requires aggressive treatment and aggressive prayer.
For now, he's feeling good. The procedure they did on his lung (pleurodesis) is working so far. His white blood cells are alarmingly low (500). we have a follow up appt tomorrow. They plan to do a scan after the second round of chemo to see how it's going. i had mentioned to a few people that we were praying that they choose the right chemo the first time. And not even being sure of what they we're dealing with, they gave him exactly what they would have had they known. (Dr didn't want to wait because he was trying to stop it from spreading.)
So Jen where is God in all of this? He's here. Although we didn't get the answer we want, he's here. Answers to prayers, his presence comforting, his grace equipping me. I am not a strong person. On the night my husband was having trouble with co2, I was very much aware of God's grace sustaining me, enabling me to stay level headed, in the spirit, and help my husband instead of falling apart. In the middle of all of that I felt we were SAFE because he were in his hands.
The future is a scary place for me right now. It looks very dark. I have a lot of worries. I'm praying for a miracle, understanding I may not get one. But I will trust him. Even if. because he is faithful.
Last year I spoke a message on Abundant Life. Jesus said "The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly." John 10:10 KJV. I started out by saying abundant life is not about having it all, doing it all and being it all.
As my message came to a close, I stated this - "Being fully persuaded that I am loved by God, knowing that I can trust him, that I’m called according to his purpose, that he empowers me to walk in his truth and equips me to multiply the love of Christ? That’s what abundant life looks like to me." Listening to my own message earlier this week, I realized that none of that has changed.
***
2/9 long update - My update is going to be a bit long. thank you all for prayers and kind words. We were supposed to go home today but we are here at the hospital til tomorrow night or Wednesday. We had some complications. Otherwise I think chemo would have been smooth sailing. He was surprised at how good he felt the first two days.
BUT the fluid on his lung is causing issues. They drained a liter on Friday. On Saturday he was really sleepy but as the day went on he got very anxious. He couldn't tell me what was bothering him but he became confused and disoriented. He was hyperventilating and even whistle breathing.
In the middle of the night when they checked his vitals, his oxygen saturation level was only 84%. It should be at least 94%. They did a chest X-ray and gave a Nebulizer treatment. In between all of this we were up every 10 mins (not even kidding) for him to pee because of the constant IV fluids. I think I got a half hour sleep that night.
Finally the nurse came in - woke me up! To say they were transferring us to special care unit. we first arrived, they said he was their sickest patient. I found out later that the only reason he was in that unit was because ICU was full, and he was receiving ICU quality care.
In the middle of all of this, Fred continued to say he wasn't having breathing problems and wasn't in any pain. He was upset that they wouldn't let him sleep AND "I just came to the hospital for chemo! Why are they doing all this other stuff to me?!" I went behind being very appreciative and trying to do damage control. He'll appreciate it once he's feeling better.
It was determined that the fluid buildup - part of which might have been from the 24/7 IV fluids - was not only affecting his oxygen but also causing co2 to build up. That's what was causing the confusion. I'm so glad because I was worried he would have this mental torture every time.
They stopped IV and started lasix to drain the fluids. He got a chest tube put in to keep it draining.
He's doing a lot better, the confusion is gone and he is back on the chemo ward. He's no longer critical praise God. We were both pretty crabby today but got over ourselves.
In other news, they still haven't been able to pinpoint the exact subtype of cancer. This is stumping them! They have it down to three, mostly two actually. They all have the same two base drugs and depending on what type it is they might add an additional drug or two. They started chemo with the two base drugs because they wanted to start right away to stop it from spreading.
The current plan is for us to go home tomorrow night or Wednesday. They are still monitoring his lungs. I'm not sure what happens next.
***
2/3 - Thank you all. Going to bed shortly but copy and pasting text I sent to family. Encouraged today. Very tired.
Outpatient 10:30 am thurs for chemo treatment, immediately followed by hospital admission. He will be there over the weekend and prob discharged Monday. We r starting immediately working on nutrition to build immunity.
between the two things they r determining, treatment is the same except possible addition of an extra drug. Dr was like a kid on Christmas morning when I gave him the packet from Virtua. TheY can run their own tests. They r going to go through it carefully tomorrow.
He said what fred has is very rare. That's why we got this guy, rare is what he deals with. Fred was topic of conference discussion this am.
***
This is an update to this thread:
2peasrefugees.boards.net/thread/15340/jan-update-op-on-mine
And this one:
2peasrefugees.boards.net/thread/16504/friend
The verdict is in. My husband has stage 4 cancer. It is some kind of sarcoma, they will know for sure exactly what type within the next few days. They had a difficult time figuring out what it was because the way it presented was rare.
We are now working with Penn Medicine in Philadelphia. Our doctor is the director of their sarcoma dept, director of the cancer hospital and one of the top in his specialty.
The plan is for dh to go to Penn as inpatient receiving chemo for 4 days, then home for 3 weeks, inpatient 4 days, home 3 weeks and so on. He expects that after one cycle of chemo they will know if it's helping at all. If not, they ditch it and try the next.
Dr believes he has had it for just 4 months, it is spreading rapidly. But he says the quicker is spreads the more susceptible it is to being destroyed.
We didn't ask to join this club and really don't want to learn this new language. But here we are. I don't know what this next season is going to look like. But I believe in a big God and have seen evidence of his personal care of us.
Thank you for your concern for me and mine.
