Monday, July 27, 2009
Memorial Service
For those of you who are unable to attend Jon's Memorial Service, it will be broadcast live at www.fbcwaldoboro.org (click on FBC Live).
Saturday, July 25, 2009
Memorial Service for Jon
Sorry everyone, I neglected a vital piece of information in my last post. Jon's Memorial Service will be held on THURSDAY (July 30th) at 11 am at First Baptist Church in Waldoboro, ME.
Memorial Service for Jon
Jon's Memorial Service will be held at 11:00 am at First Baptist Church in Waldoboro, ME on route 1 (next to Moody's Diner). In lieu of flowers donations may be made to the building fund at First Baptist Church of Waldoboro, PO Box 324, Waldoboro, ME 04572.
He is Home
Jon's unexpected journey is now complete. He went home to be with the Lord last night at 9:10 pm, surrounded by his family with prayer and singing. I will post again with details of the memorial service. Your continued prayers are appreciated.
Wednesday, July 22, 2009
I am now out of the hospital, but am returning tomorrow (Thu) for another bronchosopy at 1pm, and will be admitted overnight Thu. for observation. If nothing out of the ordinary happens with the procedure, I'll be discharged Friday sometime. I will remain in Claremont until we get the results of the bronch and a plan to move forward is developed. After all of the tests and scans done while I was admitted the last 10 days, we still do not have a definitive diagnosis, though progress has been made toward that end, and many things have been ruled out. It seems as if there are 2 different things happening:
1) a doughnut-looking mass in the upper right part of my lung that's pretty small. These type of masses are usually a fungal infection and are usually treated with a particular type of drugs. My mass, however, has been tested for many different types of infection, and has come back negative in all tests. It has also been tested to see if it's cancerous, and they tell us it's not.
2) a condition affecting all of my lungs at some level, which is usually treated with a different type of medication than the fungal infection, and would probably encourage the growth of the fungal infection.
I do not expect to have all of the initial results until at least Tue. or Wed. of next week, and probably won't meet with the doctor until later in the week.
I will most likely have some medication changes that will need to be closely monitored for at least another week or two, so we are once again "setting up shop" for at least another 2-3 weeks here in Claremont.
Please continue to pray with us for the following things:
1) that the bronch would give us some definitive results and a clear diagnosis.
2) that the doctors would have wisdom when they meet to discuss the treatment plan after the diagnosis is made.
3) that I would not have to be admitted again - at least until we know that action plan is. I found this last admission to be one of the toughest ones I've had mentally, as I was literally just waiting for the results to come back and the doctors to come up with a plan. I ended up being discharged (after 11 days!) with no treatment ever being done, and no definitive diagnosis. In that sense both of my transplants, though longer in each case, were easier because there was a clear goal and direction to focus on and shoot for.
4) That I would be able to improve in my ability to breathe and care for myself. Right now, I can only walk about 15 feet or so before being out of breath, and I can't stand for longer than a couple of minutes. This makes it hard for me to be alone anywhere for any length of time.
5) That my cough and chest congestion would disappear, or at least decrease.
6) For the relationships I developed and conversations I had with the following people at the hospital over the last 11 days: Tina, Lisa, Larry, John, Ken.
Thanks for continuing to share the burden of prayer with us. Realize that when you think of us, then lift even a brief "arrow" prayer (i.e. Nehemiah), the Holy Spirit takes your thoughts and utterances, not just the words you form, and brings them to God the Father on your half and to our benefit. Wow! Even when you don't know what's needed at that moment, a simple "God, whatever Jon needs right now, please take care of it" goes to work!
Jon, Lisa, Jillian, & JJ
1) a doughnut-looking mass in the upper right part of my lung that's pretty small. These type of masses are usually a fungal infection and are usually treated with a particular type of drugs. My mass, however, has been tested for many different types of infection, and has come back negative in all tests. It has also been tested to see if it's cancerous, and they tell us it's not.
2) a condition affecting all of my lungs at some level, which is usually treated with a different type of medication than the fungal infection, and would probably encourage the growth of the fungal infection.
I do not expect to have all of the initial results until at least Tue. or Wed. of next week, and probably won't meet with the doctor until later in the week.
I will most likely have some medication changes that will need to be closely monitored for at least another week or two, so we are once again "setting up shop" for at least another 2-3 weeks here in Claremont.
Please continue to pray with us for the following things:
1) that the bronch would give us some definitive results and a clear diagnosis.
2) that the doctors would have wisdom when they meet to discuss the treatment plan after the diagnosis is made.
3) that I would not have to be admitted again - at least until we know that action plan is. I found this last admission to be one of the toughest ones I've had mentally, as I was literally just waiting for the results to come back and the doctors to come up with a plan. I ended up being discharged (after 11 days!) with no treatment ever being done, and no definitive diagnosis. In that sense both of my transplants, though longer in each case, were easier because there was a clear goal and direction to focus on and shoot for.
4) That I would be able to improve in my ability to breathe and care for myself. Right now, I can only walk about 15 feet or so before being out of breath, and I can't stand for longer than a couple of minutes. This makes it hard for me to be alone anywhere for any length of time.
5) That my cough and chest congestion would disappear, or at least decrease.
6) For the relationships I developed and conversations I had with the following people at the hospital over the last 11 days: Tina, Lisa, Larry, John, Ken.
Thanks for continuing to share the burden of prayer with us. Realize that when you think of us, then lift even a brief "arrow" prayer (i.e. Nehemiah), the Holy Spirit takes your thoughts and utterances, not just the words you form, and brings them to God the Father on your half and to our benefit. Wow! Even when you don't know what's needed at that moment, a simple "God, whatever Jon needs right now, please take care of it" goes to work!
Jon, Lisa, Jillian, & JJ
Tuesday, July 21, 2009
free at last!
I was discharged about 5pm today! I get to spend tonight and tomorrow night at my in-laws (while Lisa and the kids are making a quick trip home to Maine for Jilli's dentist visit tomorrow!) I'll meet them back at the hospital here on Thu., where grammie and grampie will take the kids back to their house, and I'll have another bronchoscopy (long story there!), and will be kept overnight for observation, planning to be back here on Friday at some point. Hope to get more info up tomorroww, but that's the current plan. It's a long way from where the plan was when I got out of bed this morning, and I have no idea what may change between now and Thu., but I'll do my best to update here.
Saturday, July 18, 2009
update from week of July 10-17
from Lisa's Facebook update on Fri. July 17:
I know many of you are anxious to hear what is going on with Jon, but up until today we really had no information. Jon has been taken off respiratory precautions, so the kids were finally able to visit today. The tuberculosis was negative - praise the Lord! Jon seems to be feeling better today, which has been encouraging. He loves hearing from all of you by email or facebook! Keep it coming!
We learned from the doctors today that the findings of the needle biopsy were inconclusive - nothing came up positive. The bronchoscopy was negative for everything they tested for including RSV, but there is definitely something going on. Jon has two issues right now: 1. His severely decrease lung function, cough, shortness of breath and need for oxygen - this is all called bronchiolitis obliterans syndrome, meaning something is causing the airways in his lungs to die off, and 2. The cavitary lesion that was discovered on his CT scan. The docs feel these are two separate issues, but both need to be treated.
Since the biopsy results were inconclusive, there was talk of doing a VATS procedure (3 incisions on his right side to go in and take a chunk of the lesion), however, to do this procedure they have to deflate his right lung, put him on a respirator, and the surgeon feels that is too risky at this point. So no surgery.
The doctors, knowing this was a possibility, have come up with a plan B. They feel very strongly that the bronchiolitis obliterans syndrome (BOS) is caused by graft vs. host disease (GVHD) - Jon had GVHD earlier this year but it affected his skin. The treatment for this is high dose steroids to further suppress his immune system, and the GVHD would calm down, and his lungs would improve. There is another possible reason for the BOS in his lungs, and that is infection. However treatment for GVHD and infection are very different. If they treat for GVHD, and Jon gets worse, they will stop the steroids and treat him for infection. He will be monitored very closely during his treatment.
Now to complicate matters, the cavitary lesion in his right lung is likely some sort of infection. If Jon is being treated for GVHD with high dose steroids, his immune system will be suppressed and an infection could grow rapidly. So, Jon will be treated with other meds to keep the infection under control.
I know this is a lot of information, and we are still trying to process it all. Our prayer at this point is that the treatment for GVHD will be effective and Jon would improve beyond what the doctors expect, and that the cavitary lesion would disappear with meds and not be a further issue. I don't know how long Jon will be in the hospital, but they have hopes of getting him out as soon as they can. I don't know if that is a matter of days or weeks or what, but we're praying it's soon. We will stay in Claremont for a while after his is discharged until we get the OK from the docs to head back to Maine.
We are both weary of it all, but we are so thankful to know a God who is in control of all of this. Thank you all for your kind words and prayers - both are very much appreciated. I will try to keep you all in the loop on this new leg of the journey.
I know many of you are anxious to hear what is going on with Jon, but up until today we really had no information. Jon has been taken off respiratory precautions, so the kids were finally able to visit today. The tuberculosis was negative - praise the Lord! Jon seems to be feeling better today, which has been encouraging. He loves hearing from all of you by email or facebook! Keep it coming!
We learned from the doctors today that the findings of the needle biopsy were inconclusive - nothing came up positive. The bronchoscopy was negative for everything they tested for including RSV, but there is definitely something going on. Jon has two issues right now: 1. His severely decrease lung function, cough, shortness of breath and need for oxygen - this is all called bronchiolitis obliterans syndrome, meaning something is causing the airways in his lungs to die off, and 2. The cavitary lesion that was discovered on his CT scan. The docs feel these are two separate issues, but both need to be treated.
Since the biopsy results were inconclusive, there was talk of doing a VATS procedure (3 incisions on his right side to go in and take a chunk of the lesion), however, to do this procedure they have to deflate his right lung, put him on a respirator, and the surgeon feels that is too risky at this point. So no surgery.
The doctors, knowing this was a possibility, have come up with a plan B. They feel very strongly that the bronchiolitis obliterans syndrome (BOS) is caused by graft vs. host disease (GVHD) - Jon had GVHD earlier this year but it affected his skin. The treatment for this is high dose steroids to further suppress his immune system, and the GVHD would calm down, and his lungs would improve. There is another possible reason for the BOS in his lungs, and that is infection. However treatment for GVHD and infection are very different. If they treat for GVHD, and Jon gets worse, they will stop the steroids and treat him for infection. He will be monitored very closely during his treatment.
Now to complicate matters, the cavitary lesion in his right lung is likely some sort of infection. If Jon is being treated for GVHD with high dose steroids, his immune system will be suppressed and an infection could grow rapidly. So, Jon will be treated with other meds to keep the infection under control.
I know this is a lot of information, and we are still trying to process it all. Our prayer at this point is that the treatment for GVHD will be effective and Jon would improve beyond what the doctors expect, and that the cavitary lesion would disappear with meds and not be a further issue. I don't know how long Jon will be in the hospital, but they have hopes of getting him out as soon as they can. I don't know if that is a matter of days or weeks or what, but we're praying it's soon. We will stay in Claremont for a while after his is discharged until we get the OK from the docs to head back to Maine.
We are both weary of it all, but we are so thankful to know a God who is in control of all of this. Thank you all for your kind words and prayers - both are very much appreciated. I will try to keep you all in the loop on this new leg of the journey.
Friday, July 17, 2009
Update - July 17
I know many of you are anxious to hear what is going on with Jon, but up until today we really had no information. Jon has been taken off respiratory precautions, so the kids were finally able to visit today. The tuberculosis was negative - praise the Lord! Jon seems to be feeling better today, which has been encouraging. He loves hearing from all of you by email or facebook! Keep it coming!
We learned from the doctors today that the findings of the needle biopsy were inconclusive - nothing came up positive. The bronchoscopy was negative for everything they tested for including RSV, but there is definitely something going on. Jon has two issues right now: 1. His severely decrease lung function, cough, shortness of breath and need for oxygen - this is all called bronchiolitis obliterans syndrome, meaning something is causing the airways in his lungs to die off, and 2. The cavitary lesion that was discovered on his CT scan. The docs feel these are two separate issues, but both need to be treated.
Since the biopsy results were inconclusive, there was talk of doing a VATS procedure (3 incisions on his right side to go in and take a chunk of the lesion), however, to do this procedure they have to deflate his right lung, put him on a respirator, and the surgeon feels that is too risky at this point. So no surgery.
The doctors, knowing this was a possibility, have come up with a plan B. They feel very strongly that the bronchiolitis obliterans syndrome (BOS) is caused by graft vs. host disease (GVHD) - Jon had GVHD earlier this year but it affected his skin. The treatment for this is high dose steroids to further suppress his immune system, and the GVHD would calm down, and his lungs would improve. There is another possible reason for the BOS in his lungs, and that is infection. However treatment for GVHD and infection are very different. If they treat for GVHD, and Jon gets worse, they will stop the steroids and treat him for infection. He will be monitored very closely during his treatment.
Now to complicate matters, the cavitary lesion in his right lung is likely some sort of infection. If Jon is being treated for GVHD with high dose steroids, his immune system will be suppressed and an infection could grow rapidly. So, Jon will be treated with other meds to keep the infection under control.
I know this is a lot of information, and we are still trying to process it all. Our prayer at this point is that the treatment for GVHD will be effective and Jon would improve beyond what the doctors expect, and that the cavitary lesion would disappear with meds and not be a further issue. I don't know how long Jon will be in the hospital, but they have hopes of getting him out as soon as they can. I don't know if that is a matter of days or weeks or what, but we're praying it's soon. We will stay in Claremont for a while after his is discharged until we get the OK from the docs to head back to Maine.
We are both weary of it all, but we are so thankful to know a God who is in control of all of this. Thank you all for your kind words and prayers - both are very much appreciated. I will try to keep you all in the loop on this new leg of the journey.
We learned from the doctors today that the findings of the needle biopsy were inconclusive - nothing came up positive. The bronchoscopy was negative for everything they tested for including RSV, but there is definitely something going on. Jon has two issues right now: 1. His severely decrease lung function, cough, shortness of breath and need for oxygen - this is all called bronchiolitis obliterans syndrome, meaning something is causing the airways in his lungs to die off, and 2. The cavitary lesion that was discovered on his CT scan. The docs feel these are two separate issues, but both need to be treated.
Since the biopsy results were inconclusive, there was talk of doing a VATS procedure (3 incisions on his right side to go in and take a chunk of the lesion), however, to do this procedure they have to deflate his right lung, put him on a respirator, and the surgeon feels that is too risky at this point. So no surgery.
The doctors, knowing this was a possibility, have come up with a plan B. They feel very strongly that the bronchiolitis obliterans syndrome (BOS) is caused by graft vs. host disease (GVHD) - Jon had GVHD earlier this year but it affected his skin. The treatment for this is high dose steroids to further suppress his immune system, and the GVHD would calm down, and his lungs would improve. There is another possible reason for the BOS in his lungs, and that is infection. However treatment for GVHD and infection are very different. If they treat for GVHD, and Jon gets worse, they will stop the steroids and treat him for infection. He will be monitored very closely during his treatment.
Now to complicate matters, the cavitary lesion in his right lung is likely some sort of infection. If Jon is being treated for GVHD with high dose steroids, his immune system will be suppressed and an infection could grow rapidly. So, Jon will be treated with other meds to keep the infection under control.
I know this is a lot of information, and we are still trying to process it all. Our prayer at this point is that the treatment for GVHD will be effective and Jon would improve beyond what the doctors expect, and that the cavitary lesion would disappear with meds and not be a further issue. I don't know how long Jon will be in the hospital, but they have hopes of getting him out as soon as they can. I don't know if that is a matter of days or weeks or what, but we're praying it's soon. We will stay in Claremont for a while after his is discharged until we get the OK from the docs to head back to Maine.
We are both weary of it all, but we are so thankful to know a God who is in control of all of this. Thank you all for your kind words and prayers - both are very much appreciated. I will try to keep you all in the loop on this new leg of the journey.
Saturday, July 11, 2009
Update - July 11
Last night was a very rough night for Jon. After doing so much during the day and not eating anything until 8:45 pm (due to the need to fast for his procedures), he had a difficult time catching his breath several times during the night and was very weak and run down. This morning, the pulmonary doctor said he wasn't surprised at that, and he admitted that they probably overdid it yesterday. Jon is feeling much better today, then last night, and has been able to eat some and get up a little with help. The first of the tuberculosis tests have come back negative, but there are several more to do before they rule that out. His RSV culture also came back negative, so his respiratory issues are not RSV - we are thankful that he won't have to do anymore breathing treatments for the RSV. The other possibility is that he has graft vs. host disease in his lungs, but of course that test takes longer to come back, so we wait. We are thanking the Lord for the answers we do have and praying for His direction for what is to come.
Update - July 10
Well, it just doesn't seem to stop....
Jon, the kids, and I left yesterday morning (Thursday) to come down to New Hampshire for appointments at DHMC (Dartmouth-Hitchcock Medical Center). Jon had a lung function test and a CT scan of the chest yesterday afternoon, and on the way back to my folks for dinner, we got a call saying the doctors saw something new on his CT scan, so Jon needed to have a needle biopsy on Friday to find out what was going on. To make a long story short, Jon's lung function has decreased by 40% in only 6 weeks, so they are very concerned about his breathing, but they don't know what is causing his symptoms. The spot they saw on the scan could be a number of things, but they are most concerned that it could be either tuberculosis or a fungal infection, both of which require long term treatments. We should know more tomorrow regarding the tuberculosis. But the spot from the scan would not be affecting his breathing this severely. They suspect he is still having problems with his RSV and possibly graft vs. host disease in his lungs. He had another procedure tonight (bronchoscopy) to get some samples from his lungs to determine what is causing the breathing problems. All this to say, no one really knows what is going on right now. He was admitted to DHMC this afternoon, so they can keep his breathing under control until they figure out what is going on. Please pray that results from these procedures they have done today will come back quickly and be definitive, so he can be treated soon.
Jon, the kids, and I left yesterday morning (Thursday) to come down to New Hampshire for appointments at DHMC (Dartmouth-Hitchcock Medical Center). Jon had a lung function test and a CT scan of the chest yesterday afternoon, and on the way back to my folks for dinner, we got a call saying the doctors saw something new on his CT scan, so Jon needed to have a needle biopsy on Friday to find out what was going on. To make a long story short, Jon's lung function has decreased by 40% in only 6 weeks, so they are very concerned about his breathing, but they don't know what is causing his symptoms. The spot they saw on the scan could be a number of things, but they are most concerned that it could be either tuberculosis or a fungal infection, both of which require long term treatments. We should know more tomorrow regarding the tuberculosis. But the spot from the scan would not be affecting his breathing this severely. They suspect he is still having problems with his RSV and possibly graft vs. host disease in his lungs. He had another procedure tonight (bronchoscopy) to get some samples from his lungs to determine what is causing the breathing problems. All this to say, no one really knows what is going on right now. He was admitted to DHMC this afternoon, so they can keep his breathing under control until they figure out what is going on. Please pray that results from these procedures they have done today will come back quickly and be definitive, so he can be treated soon.
Wednesday, June 24, 2009
appts Fri. June 19
I had appointments this past Friday, and though not much has changed in my condition, status, or symptoms, there was enough to encourage the docs to say that they think I may have turned the corner with this virus, and might now be on the upswing of the curve, headed ever so slowly still, towards healing. i am coughing more, and breathing is a bit more labored, though it seems that is tied to the humidity outside. i will have my next visit witht he docs on Fri. July 10th, and they will run a number of tests and scans that day to make sure nothing is getting worse and the virus is getting better.
So, for now, pray with us that:
1) the virus really is healing and getting out of my system, and that healing would happen a bit more rapidly than it has been.
2) the tests & scans would show no growth or progression with either cancer or the virus,
3) that i wouldn't have to have any further inpatient treatment for the virus
4) for safe travels to NH and back for the visit on the 10th, and that we'd be able to make these trips less frequent real soon.
thanks, Jon & Lisa
So, for now, pray with us that:
1) the virus really is healing and getting out of my system, and that healing would happen a bit more rapidly than it has been.
2) the tests & scans would show no growth or progression with either cancer or the virus,
3) that i wouldn't have to have any further inpatient treatment for the virus
4) for safe travels to NH and back for the visit on the 10th, and that we'd be able to make these trips less frequent real soon.
thanks, Jon & Lisa
Tuesday, June 9, 2009
an update and links to some good reading
It has once again been too long since I update you all here on the blog, so here goes on trying to catch you up since the last post. After our trip to NJ over Memorial Day weekend, which went pretty well, given my condition right now, we returned home by way of NH and "stopped in" at Dartmouth for a check-up. We were there on the Thu. after Memorial Day, which made it about 2 months since the first sighting of the RSV infection in my system, and while it had not visibly progressed on any of the tests or scans, I certainly wasn't improving (in fact, with having to go on the oxygen, a good argument could be made that my condition had gotten worse, however slight it might have been).
So, we agreed with the recommendation of the transplant doctor, in consult with the infectious disease specialist, for me to admitted there at Dartmouth for 3 days to receive course of Ribovirin treatments, a nebulized inhalation treatment that required going into a "bubble" 3 times a day and putting on a mask to inhale a fine mist/powder that is suppposed to get down into my lungs and help to knock out the RSV. I was discharged on Sunday May 31, so it has now been a little over a week since the treatments ended, and I think there has been some slight improvement. I was coughing a lot when I got out, including several coughing fits of varying lengths each day, which were at times uncontrollable and up to 2 hours long. In the last couple of days, they have been less severe and no longer than 15-20 minutes. I was having a lot of weasing, squeaking, and strange breathing sounds when I was discharged, but am having less of that now. I am still having considerable breathing difficulty, still need the oxygen pretty consistently, except when I am in bed asleep, and I still have very little stamina or tolerance for exertion at all (a walk out to the deck and a lap or two around the 15 X 15 or so area wipes me out and I have to sit down to catch my breath).
I was able, however, to be discharged in time to spend my birthday last Wed. June 3rd here at home with Lisa and the kids, and we had a great day being at home together, enjoyed a birthday dinner from the grill and then opened presents together. It was great to be home with them for my birthday this year, as I've spent the last 2 birthdays in the hospital, as well as several other holidays (valentine's day, Lisa's birthday, Father's Day, etc.). I was actually able to avoid (dodge may be more like it!) all doctors appts. and hospital visits last week, for which I am overjoyed!
I went to Brunswick yesterday to have routine blood work drawn, and will find out when those results come back whether I need to have an IV immune treatment this week or not, and what medication changes are coming as they continue to try to taper me off both of the immune suppressants I am on. So far, I seem to be tolerating the reductions they've made pretty well, which is another thing to be thankful for. We will be returning to Dartmouth for a checkup next Friday June 19, and hope it is just a checkup this time, and not another surprise admission like last time!
Right now, you can pray with us for the following:
1) continued good health for the rest of the family - Lisa, Jillian, and JJ have all been pretty healthy as of late and that has made it easier to focus on my issues.
2) that my overall health and condition would improve to the point that I could get off the oxygen and get rid of the coughing and respiratory symptoms.
3) that we would have safe travels to NH next weekend and that all would go smoothly at that visit, where we'll be seeing both the transplant doctor and the infectious disease doctor.
4) for our transplant doctor - wisdom for how to treat me and how much to require me to be there vs. have things done here at home in Maine. Also, for his family as his mother came down terminally ill this past week and is not expected to live through the coming weekend. Pray for his mom's salvation and that God would show Himself in the midst of everything. Pray also for my witness to him next time I see him.
Thanks again for your "bearing the burden" with us the load of these prayer concerns by lifting us up before the throne of grace.
James 1:3 (ESV) "you know that the testing of your faith produces steadfastness (Greek hupomene - "to bear up under"). And let steadfastness have its full effect, that you may be perfect and complete, lacking nothing."
It's my prayer that when the opportunity to perfect & complete your faith comes your way (trials and difficulties WILL come your way, by the way, if you are truly a disciple of Jesus, and that;s exactly what James is saying trials are - an opportunity), you will have the ability, faith, & wisdom enough to make the choice to "hupomene" - bear up under - rather than cut & run or seek to escape at the first opportunity. Look for what God wants to do in and through you rather than what's happening to you - it will change your perspective and your life!
Now for links to some good reading:
Did you know that you are a theologian, whether you think of yourself that way or not? Read this
Do you want to know what really matters in life? Do you want to increase your obedience to Jesus? Read this quote
If you're a leader of any kind, whether a Sunday School teacher, a pastor, deacon, elder, or influencer of any sort, read this passage, originally from Richard Baxter, the 16th century Puritan pastor and writer, on keeping your heart.
Happy reading, and may your heart be encouraged and your faith grow as a result of what you read here!
So, we agreed with the recommendation of the transplant doctor, in consult with the infectious disease specialist, for me to admitted there at Dartmouth for 3 days to receive course of Ribovirin treatments, a nebulized inhalation treatment that required going into a "bubble" 3 times a day and putting on a mask to inhale a fine mist/powder that is suppposed to get down into my lungs and help to knock out the RSV. I was discharged on Sunday May 31, so it has now been a little over a week since the treatments ended, and I think there has been some slight improvement. I was coughing a lot when I got out, including several coughing fits of varying lengths each day, which were at times uncontrollable and up to 2 hours long. In the last couple of days, they have been less severe and no longer than 15-20 minutes. I was having a lot of weasing, squeaking, and strange breathing sounds when I was discharged, but am having less of that now. I am still having considerable breathing difficulty, still need the oxygen pretty consistently, except when I am in bed asleep, and I still have very little stamina or tolerance for exertion at all (a walk out to the deck and a lap or two around the 15 X 15 or so area wipes me out and I have to sit down to catch my breath).
I was able, however, to be discharged in time to spend my birthday last Wed. June 3rd here at home with Lisa and the kids, and we had a great day being at home together, enjoyed a birthday dinner from the grill and then opened presents together. It was great to be home with them for my birthday this year, as I've spent the last 2 birthdays in the hospital, as well as several other holidays (valentine's day, Lisa's birthday, Father's Day, etc.). I was actually able to avoid (dodge may be more like it!) all doctors appts. and hospital visits last week, for which I am overjoyed!
I went to Brunswick yesterday to have routine blood work drawn, and will find out when those results come back whether I need to have an IV immune treatment this week or not, and what medication changes are coming as they continue to try to taper me off both of the immune suppressants I am on. So far, I seem to be tolerating the reductions they've made pretty well, which is another thing to be thankful for. We will be returning to Dartmouth for a checkup next Friday June 19, and hope it is just a checkup this time, and not another surprise admission like last time!
Right now, you can pray with us for the following:
1) continued good health for the rest of the family - Lisa, Jillian, and JJ have all been pretty healthy as of late and that has made it easier to focus on my issues.
2) that my overall health and condition would improve to the point that I could get off the oxygen and get rid of the coughing and respiratory symptoms.
3) that we would have safe travels to NH next weekend and that all would go smoothly at that visit, where we'll be seeing both the transplant doctor and the infectious disease doctor.
4) for our transplant doctor - wisdom for how to treat me and how much to require me to be there vs. have things done here at home in Maine. Also, for his family as his mother came down terminally ill this past week and is not expected to live through the coming weekend. Pray for his mom's salvation and that God would show Himself in the midst of everything. Pray also for my witness to him next time I see him.
Thanks again for your "bearing the burden" with us the load of these prayer concerns by lifting us up before the throne of grace.
James 1:3 (ESV) "you know that the testing of your faith produces steadfastness (Greek hupomene - "to bear up under"). And let steadfastness have its full effect, that you may be perfect and complete, lacking nothing."
It's my prayer that when the opportunity to perfect & complete your faith comes your way (trials and difficulties WILL come your way, by the way, if you are truly a disciple of Jesus, and that;s exactly what James is saying trials are - an opportunity), you will have the ability, faith, & wisdom enough to make the choice to "hupomene" - bear up under - rather than cut & run or seek to escape at the first opportunity. Look for what God wants to do in and through you rather than what's happening to you - it will change your perspective and your life!
Now for links to some good reading:
Did you know that you are a theologian, whether you think of yourself that way or not? Read this
Do you want to know what really matters in life? Do you want to increase your obedience to Jesus? Read this quote
If you're a leader of any kind, whether a Sunday School teacher, a pastor, deacon, elder, or influencer of any sort, read this passage, originally from Richard Baxter, the 16th century Puritan pastor and writer, on keeping your heart.
Happy reading, and may your heart be encouraged and your faith grow as a result of what you read here!
Saturday, May 16, 2009
update from this week
All of the results from the tests and such this past week at Dartmouth came back, and the chest CT done showed no changes, the repeat bronchoscopy showed nothing different, and the lab numbers were all improved, except for the minerals that we knew about and for which I received some simple IV hydration while down at Dartmouth on Thursday.
However, this week, I wasn't quite feeling "up to snuff" when I went for my weekly IV immune treatment in Brunswick on Thu., so we met with the oncologist there and discussed things, in particular my breathing, which seemed to be more labored and difficult this week than last week. While I was getting my IV treatment, I tried being on oxygen, and it seemed to help some, so after looking at the O2 saturation numbers (how much oxygen is in your blood) and seeing that it was indeed making a difference, especially after any amount of exertion, it was decided to try the oxygen here at home for now and see how things went. The oxygen company arrived Thu. night and set up the oxygen machine here at home, and also left a couple of portable tanks, just so that I could have that experience of feeling like the evil doctor in charge of the lab from "the Pretender", who I also happen to resemble a bit now with my bald head! It wasn't difficult to figure out, and I have been on the oxygen here for 2 days now, and it does seem to make a difference in my ability to breathe easier and deeper. The chest xray and a follow up chest CT at Brunswick on Friday both showed no real further changes, and I am scheduled for another lung function test here in Brunswick on Monday morning, which should give some further information and results from which to determine what and if any the next step should be. We plan to leave for New Jersey on Wednesday, traveling down to be with family for the Memorial Day weekend, returning by way of New Hampshire the following Tuesday with appointments at Dartmouth on Wednesday. If all goes according to plan (and it never seems to!), we will return to Maine on Thursday.
Please pray for:
1) no progression of the virus and no changes in the test results on Monday.
2) safety in traveling and stable health during the trip.
3) increased strength and ease of breathing to return so that I could get off the oxygen as soon as possible.
4) stable health for the kids and Lisa
Thanks for your continued interest and prayers,
Jon & Lisa
However, this week, I wasn't quite feeling "up to snuff" when I went for my weekly IV immune treatment in Brunswick on Thu., so we met with the oncologist there and discussed things, in particular my breathing, which seemed to be more labored and difficult this week than last week. While I was getting my IV treatment, I tried being on oxygen, and it seemed to help some, so after looking at the O2 saturation numbers (how much oxygen is in your blood) and seeing that it was indeed making a difference, especially after any amount of exertion, it was decided to try the oxygen here at home for now and see how things went. The oxygen company arrived Thu. night and set up the oxygen machine here at home, and also left a couple of portable tanks, just so that I could have that experience of feeling like the evil doctor in charge of the lab from "the Pretender", who I also happen to resemble a bit now with my bald head! It wasn't difficult to figure out, and I have been on the oxygen here for 2 days now, and it does seem to make a difference in my ability to breathe easier and deeper. The chest xray and a follow up chest CT at Brunswick on Friday both showed no real further changes, and I am scheduled for another lung function test here in Brunswick on Monday morning, which should give some further information and results from which to determine what and if any the next step should be. We plan to leave for New Jersey on Wednesday, traveling down to be with family for the Memorial Day weekend, returning by way of New Hampshire the following Tuesday with appointments at Dartmouth on Wednesday. If all goes according to plan (and it never seems to!), we will return to Maine on Thursday.
Please pray for:
1) no progression of the virus and no changes in the test results on Monday.
2) safety in traveling and stable health during the trip.
3) increased strength and ease of breathing to return so that I could get off the oxygen as soon as possible.
4) stable health for the kids and Lisa
Thanks for your continued interest and prayers,
Jon & Lisa
Sunday, May 10, 2009
quick update
We are finally back home after a long week at Dartmouth. A Tue. night trip over, appts. all day Wed. & Thu. (though only expecting a partial day Wed. & return home Thu.), then a return trip home Fri. and spent all day Sat. achy, in bed, & laying around from the long week. I am starting to join the "land of the living" again today. More later, but glad to be home and on the mend again. No trips anywhere until Memorial day weekend, and we don't have to go back to Dartmouth until the week after that.
Tuesday, April 21, 2009
update - appointments from April 16-17
I had my bronchoscopy on Thu. 4/16 and appts. with both my transplant doc and the infectious disease specialist, who has been following me since transplant, specifically my lungs and respiratory issues. We were surprised, but relieved to find out Friday that I have RSV, a respiratory virus, and that it probably explains a number of my current issues, to include shortness of breath, cough, congestion, and constant runny nose, all of which I've had for about 2 months now. This particular virus is actually a fairly common one, especially for babies, but also for kids & adults, though they often pass it off as a cold, as the typical symptoms are similar, and for most people, it goes away in a week or so. However, the I.D. specialist said he was not surprised I have had it this long, as the virus itself is somewhat common in all post-transplant patients, and I have the additional complication of having more immune system suppression than most due to the treatment I am on for the cGVHD. He also said he would not be surprised if it took another month for it to die off or burn out and have all the symptoms disappear. It is really nice to have some hope that so many of these symptoms are explainable, will go away, and that it won't require any other treatment (at least for now)...not even one more pill! If all I've got to do is wait another few weeks for this stuff to disappear, I can do that.
It is possible we will learn more from the bronchoscopy, and I will update again if we do, but the doc who did it said he got a good look and didn't see anything of note, but he did take a biopsy sample that could still show something after testing. For now, I am excited to have some answer to what these issues are and what could be done to get rid of them. My other major complaint is my eyes. The opthamologist continues to say they will heal with time, but were so dry and scratched it may still take another week or two yet. I have started on some new eye drops (3 different drops now - twice a day!) to help with increased tear production- this can be a chronic issue for cGVHD patients.
I also continue to struggle with peripheral neuropathy in my lower legs and feet (nerve pain & numbness). This causes them to be sore quickly and often, makes it hard to balance and walk any distance, and has caused problems with shooting nerve pain, although that has improved in the last week or so. I continue to have weekly IV immune building treatments here in Maine, and do not have to return to Dartmouth for a month - my next appointment is Fri. 5/15.
The teleconference/support group I mentioned last week was immensely helpful, educational, and encouraging, and I am looking forward to the other 3 weekly sessions on Thu. nights. I am also excited about a writing study I have volunteered to be a part of for post-transplant patients, which actually begins the 1st week of May.
You can pray with us that:
1) the virus would burn itself out and symptoms would disappear quickly.
2) we would not get any bad news from the bronchoscopy.
3) my eyes would continue to heal and moisten up, and that the dry eyes would not be or become a chronic problem.
4) my legs, balance, & walking would improve.
5) the phone group would continue to be such a positive experience.
6) the writing study would be enjoyable, helpful, and effective to the researchers.
7) I would continue to practice & develop "patient endurance" as I attempt to "hold up this rock" that God has called me to.
We continue to covet your love, prayers, & encouragement as we long for some relief during such a long, difficult journey.
It is possible we will learn more from the bronchoscopy, and I will update again if we do, but the doc who did it said he got a good look and didn't see anything of note, but he did take a biopsy sample that could still show something after testing. For now, I am excited to have some answer to what these issues are and what could be done to get rid of them. My other major complaint is my eyes. The opthamologist continues to say they will heal with time, but were so dry and scratched it may still take another week or two yet. I have started on some new eye drops (3 different drops now - twice a day!) to help with increased tear production- this can be a chronic issue for cGVHD patients.
I also continue to struggle with peripheral neuropathy in my lower legs and feet (nerve pain & numbness). This causes them to be sore quickly and often, makes it hard to balance and walk any distance, and has caused problems with shooting nerve pain, although that has improved in the last week or so. I continue to have weekly IV immune building treatments here in Maine, and do not have to return to Dartmouth for a month - my next appointment is Fri. 5/15.
The teleconference/support group I mentioned last week was immensely helpful, educational, and encouraging, and I am looking forward to the other 3 weekly sessions on Thu. nights. I am also excited about a writing study I have volunteered to be a part of for post-transplant patients, which actually begins the 1st week of May.
You can pray with us that:
1) the virus would burn itself out and symptoms would disappear quickly.
2) we would not get any bad news from the bronchoscopy.
3) my eyes would continue to heal and moisten up, and that the dry eyes would not be or become a chronic problem.
4) my legs, balance, & walking would improve.
5) the phone group would continue to be such a positive experience.
6) the writing study would be enjoyable, helpful, and effective to the researchers.
7) I would continue to practice & develop "patient endurance" as I attempt to "hold up this rock" that God has called me to.
We continue to covet your love, prayers, & encouragement as we long for some relief during such a long, difficult journey.
Monday, April 6, 2009
update - appointments from April 2-3
I was back down at Dartmouth for more checkups and some tests this past Thu. & Fri. April 2-3, and thought I'd give an update. It was a busy week, and I ended up being at a hospital or doctor every day last week - Monday was blood work here in Maine, Tue. night was another ER visit for my eye, followed Wed. by my weekly IV treatment and an eye dr. appt. here in Brunswick, then left right from there to get down to NH, where Thu. & Fri. were at Dartmouth. No wonder I was so beat this weekend!
Thu. was the eye doc at Dartmouth, and he said I may have developed a reaction tot he antibiotic eye drops while I was finishing the course with them, but in any case, my eye had gotten all dry and gritty, and both eyes were scratched and damaged - The right one is just slightly scratched and the vision out of it is not affected too much, but the left one was severely scratched and I could barely see out of it. I have stopped the eye medication, and was told to use lubricating drops and gel as often as neccesary for comfort. He said it could take a couple of weeks for the vision to return to normal, and until then I can't drive, and have had difficulty watching TV, being on the computer, or even reading, though it has improved somewhat yesterday and today. It is possible that this new dryness in the eye is a symptom of the chronic GVHD, but only time will tell. If it goes away, it as likely a reaction to the medication, but if not, it is likely another symptom of the cGVHD.
Fri. began with both a chest CT and a CT of my sinuses, to attempt to find the cause of my recent increase in breathing difficulty, and my persistent cough and consant runny nose. Both tests were clear, and a lung function test later on Fri. showed similar lung capacity to previous tests, but a 15-20% decrease in how much I can put out. I also had a swallowing study done on Fri., where you stand against an X-ray table, drink a bunch of barium of different thicknesses while they take pictures and watch the liquid flow down inside you. It was pretty cool to watch while it was being done, but having to do it on an empty stomach was not fun, as the barium tastes awful, I had to drink over a quart of it total, and it really rips up your stomach later on! They ended the swallowing study by watching me swallow a pill, which got stuck and was good they were able to see. The end result was that there really is no constriction in the throat that they can see, and the muscle movement in the esophagus is good. So, I don't know a whole lot more than I did before, though they have ruled some major things out. My feet have gotten really sore, sensitive, and have begun to hurt walking even short distances, most likely from increased neuropathy caused by the high doses of immune suppresants I am now taking for the cGVHD. They have started me on another pill that usually helps with this type of nerve pain, and said it will take a few weeks to notice a real difference, but that it most often helps things at least somewhat.
The next step will be to return to Dartmouth the end of next week, either Thu. April 16 or Fri. April 17 for a bronchoscopy, where they will put a scope down my throat to actually look into both my esophagus and my lungs to see if there are any problems there that might not be evident on the X-ray from the swallowing study. IN the meantime, it seems my mouth sores are waxing and waning, going away and then coming back in different places. Either the pain from them has subsided, or I have gotten used to it, as they don't bother me as much as before, as I am able to eat more than I was used to.
At my appointment with my transplant doc, we had a good discussion about the seriousness of GVHD and the importance of being vigilant in watching & managing the symptoms. He told me that in cases like mine, there is a 5 year mortality rate of 15-20% just from GVHD, even if cancer is no longer a part of the picture. This was new information to me, and was bit unsettling, but it's just another thing I will have to adjust to and trust God to lead the way through it. In order to learn more and be able to manage life better, I hope to be a part of a 4 week teleconference I have found for newly diagnosed GVHD patients, which starts next Thu. night April 16 and runs for 4 weeks.
For now, you best pray for the following:
1) eyes - relief from pain & itching, restoration of my vision.
2) breathing - return to normal breathing or some meaningful result from next week's scope procedure.
3) feet & legs - relief from nerve pain and return of my normal ability to walk.
4) general endurance & patience with this new diagnosis and situation I find myself in. It really is a new chapter in my "unexpected journey".
5) the teleconference I mentioned above will be beneficial and will help me recognize and mange things better.
We continue to covet your prayers, love, & support through this journey, and appreciate the notes, emails, and practical expressions of help that continue to come our way.
Thu. was the eye doc at Dartmouth, and he said I may have developed a reaction tot he antibiotic eye drops while I was finishing the course with them, but in any case, my eye had gotten all dry and gritty, and both eyes were scratched and damaged - The right one is just slightly scratched and the vision out of it is not affected too much, but the left one was severely scratched and I could barely see out of it. I have stopped the eye medication, and was told to use lubricating drops and gel as often as neccesary for comfort. He said it could take a couple of weeks for the vision to return to normal, and until then I can't drive, and have had difficulty watching TV, being on the computer, or even reading, though it has improved somewhat yesterday and today. It is possible that this new dryness in the eye is a symptom of the chronic GVHD, but only time will tell. If it goes away, it as likely a reaction to the medication, but if not, it is likely another symptom of the cGVHD.
Fri. began with both a chest CT and a CT of my sinuses, to attempt to find the cause of my recent increase in breathing difficulty, and my persistent cough and consant runny nose. Both tests were clear, and a lung function test later on Fri. showed similar lung capacity to previous tests, but a 15-20% decrease in how much I can put out. I also had a swallowing study done on Fri., where you stand against an X-ray table, drink a bunch of barium of different thicknesses while they take pictures and watch the liquid flow down inside you. It was pretty cool to watch while it was being done, but having to do it on an empty stomach was not fun, as the barium tastes awful, I had to drink over a quart of it total, and it really rips up your stomach later on! They ended the swallowing study by watching me swallow a pill, which got stuck and was good they were able to see. The end result was that there really is no constriction in the throat that they can see, and the muscle movement in the esophagus is good. So, I don't know a whole lot more than I did before, though they have ruled some major things out. My feet have gotten really sore, sensitive, and have begun to hurt walking even short distances, most likely from increased neuropathy caused by the high doses of immune suppresants I am now taking for the cGVHD. They have started me on another pill that usually helps with this type of nerve pain, and said it will take a few weeks to notice a real difference, but that it most often helps things at least somewhat.
The next step will be to return to Dartmouth the end of next week, either Thu. April 16 or Fri. April 17 for a bronchoscopy, where they will put a scope down my throat to actually look into both my esophagus and my lungs to see if there are any problems there that might not be evident on the X-ray from the swallowing study. IN the meantime, it seems my mouth sores are waxing and waning, going away and then coming back in different places. Either the pain from them has subsided, or I have gotten used to it, as they don't bother me as much as before, as I am able to eat more than I was used to.
At my appointment with my transplant doc, we had a good discussion about the seriousness of GVHD and the importance of being vigilant in watching & managing the symptoms. He told me that in cases like mine, there is a 5 year mortality rate of 15-20% just from GVHD, even if cancer is no longer a part of the picture. This was new information to me, and was bit unsettling, but it's just another thing I will have to adjust to and trust God to lead the way through it. In order to learn more and be able to manage life better, I hope to be a part of a 4 week teleconference I have found for newly diagnosed GVHD patients, which starts next Thu. night April 16 and runs for 4 weeks.
For now, you best pray for the following:
1) eyes - relief from pain & itching, restoration of my vision.
2) breathing - return to normal breathing or some meaningful result from next week's scope procedure.
3) feet & legs - relief from nerve pain and return of my normal ability to walk.
4) general endurance & patience with this new diagnosis and situation I find myself in. It really is a new chapter in my "unexpected journey".
5) the teleconference I mentioned above will be beneficial and will help me recognize and mange things better.
We continue to covet your prayers, love, & support through this journey, and appreciate the notes, emails, and practical expressions of help that continue to come our way.
Wednesday, March 25, 2009
Resource - James MacDonald Sermon Series: Turning your Trials into Gold
I just watched the DVD of his message on James 1 that is part of his series yesterday, and was really challenged by it. James does a great job of tying the whole first part of James 1 together, showing how to achieve joy in the midst of trial by "remaining under" the trial that God has placed in your life and submitting to it, asking God for wisdom AND wanting that more than your own comfort or even the end of the trial. If you need some encouragement in the midst of a trial, you've got to see or hear this series. * If you're not familiar with James MacDonald, he's the senior pastor of Harvest Bible Fellowship in Elgin, IL, the radio voice of Walk in the Word Ministries, and one of the main authors for the daily Our Journey devotional.
Click the title above to access the DVD message on his website.
Click the title above to access the DVD message on his website.
Monday, March 23, 2009
this weekend
So, I have now been on the cGVHD drug regimen for over a week now, and am seeing some slow progress with my skin resolving its peeling (again!), and the mouth sores fading some, though not as quickly as I'd like. In the meantime, I somehow got an eye infection over the weekend, and made a visit to the ER to have it checked out, since my immune system is so suppressed. The drops they gave me are helping the pain, burning, swelling, & itching, but there is still some discharge from the eye, especially in the evening and when I first get up in the morning. I have also developed some tiny blisters on the roof of my mouth, about the same time I noticed my mouth sores fading away. And I've also developed some strange, shooting nerve pain in my left foot each of the last 2 nights. So, I'm waiting today to hear back from the docs what they want me to do about these issues. I'll update again when there's more news. Thanks for continuing to check in and keep up with what's happening.
Monday, March 16, 2009
a new issue - chronic GVHD
Another update on me...first, all of my 1 year test results are back, and there are no signs of active cancer anywhere, for which I am thankful, but not surprised, as the tests have been this way since the transplant. It is really what I expected, though I was still a bit nervous, and still prayed for this outcome!
Second, I have now been officially diagnosed with chronic graft-vs-host disease (cGVHD), which in short, is where the graft (the new me, or donor cells) are now attacking not only the cancer (which is what we want, and the whole idea behind doing the transplant in the first place!, but also the host (the old me). A little bit of this is a good thing, but it's gone past that point for me, and is affecting my skin, lips, mouth, & throat. So, I've started a new drug treatment regimen for this that includes both steroids and more immune suppressing drugs (again), which means I will once again be more susceptible to infection, and will consequently have to avoid the public and especially large crowds (i.e. church) for the time being. This will be true for at least the next couple of months, but exactly how long will be determined by how my body reacts to this new drug regimen and what "balance point" is found in suppressing the negative symptoms while allowing the immune system to function normally and prevent infection. It will be a careful act of monitoring and balancing blood levels, drug levels, symptoms, and signs of infection to make sure it's all working smoothly. It is looking like all of this will require, at least for the time being, more frequent visits to the doctors than I've been doing (I had been down to once per month in NH and once per month here in Brunswick), probably requiring at least once or twice a week here in Brunswick in addition to at least a monthly visit to NH. This will probably take a least 6-9 months before I can think of being off these drugs, though for many cGVHD patients, it takes 2 years or more, and for some, it requires being on at least some of the drugs for the rest of their lives. Only God knows the future, and only time will tell what my case will be.
This is now a new chapter in my cancer journey - the cancer is gone, but has been replaced by these new issues. The proverbial light at the end of the tunnel I had been seeing has indeed turned out to be another train coming my way, and while not as big, scary, or destructive as the "cancer train", it's another change in plans and expectations, and will require going somewhere new that I really don't want to go (even if it's just a detour on my way to health and wholeness!) I am praying for new and proper perspective on all of this, and hoping it is indeed a short diversion and not a new destination. As always, your prayers, love, concern, and encouragement are appreciated and coveted.
Second, I have now been officially diagnosed with chronic graft-vs-host disease (cGVHD), which in short, is where the graft (the new me, or donor cells) are now attacking not only the cancer (which is what we want, and the whole idea behind doing the transplant in the first place!, but also the host (the old me). A little bit of this is a good thing, but it's gone past that point for me, and is affecting my skin, lips, mouth, & throat. So, I've started a new drug treatment regimen for this that includes both steroids and more immune suppressing drugs (again), which means I will once again be more susceptible to infection, and will consequently have to avoid the public and especially large crowds (i.e. church) for the time being. This will be true for at least the next couple of months, but exactly how long will be determined by how my body reacts to this new drug regimen and what "balance point" is found in suppressing the negative symptoms while allowing the immune system to function normally and prevent infection. It will be a careful act of monitoring and balancing blood levels, drug levels, symptoms, and signs of infection to make sure it's all working smoothly. It is looking like all of this will require, at least for the time being, more frequent visits to the doctors than I've been doing (I had been down to once per month in NH and once per month here in Brunswick), probably requiring at least once or twice a week here in Brunswick in addition to at least a monthly visit to NH. This will probably take a least 6-9 months before I can think of being off these drugs, though for many cGVHD patients, it takes 2 years or more, and for some, it requires being on at least some of the drugs for the rest of their lives. Only God knows the future, and only time will tell what my case will be.
This is now a new chapter in my cancer journey - the cancer is gone, but has been replaced by these new issues. The proverbial light at the end of the tunnel I had been seeing has indeed turned out to be another train coming my way, and while not as big, scary, or destructive as the "cancer train", it's another change in plans and expectations, and will require going somewhere new that I really don't want to go (even if it's just a detour on my way to health and wholeness!) I am praying for new and proper perspective on all of this, and hoping it is indeed a short diversion and not a new destination. As always, your prayers, love, concern, and encouragement are appreciated and coveted.
A great blog on grief & dealing with hard times
These are some great thoughts on grief, loss, & dealing with hard times from John Piper's daughter-in-law, who is dealing with the loss of a miscarriage. I hope you're encouraged, strengthened, and challenged by it, as I was.
Tuesday, March 10, 2009
latest update - Dartmouth visit March 5-9
The following is an update on me following my most recent visit to Dartmouth this past Thu. & Fri., which was extended through Monday:
It now appears that though I am well past the point where a drug reaction would still be having any effect on my body and my skin had cleared up, it is now headed back the other way and beginning to peel again. They are becoming more suspicious that the skin issues, though they may have been instigated by a drug reaction, are now chronic GVHD (graft-vs-host disease), and so they ran some additional tests (more than I care to count) during the day Friday and more on Monday (when I was just supposed to meet with the doctor and learn his recommended plan of action) as a result of seeing the changes between Friday and Monday.
While the PET scan results came back and show no signs of cancer anywhere, it also showed 2 cracked ribs on each side – the left ones almost healed but the right ones pretty fresh. They assume this is from the violent coughing fits I have been having. My bone marrow biopsy results won’t be back until later this week, but they don’t expect anything wrong there with the clean PET scan.
They did find a positive result to the Epstein-Barr virus, but are as of now unsure what to do about it, as there is no treatment for it and the only thing they can do is eliminate my immune suppressant drugs, which may make the skin GVHD wore, as the treatment for that would involve increasing the immune suppressants. The nurse practitioner is to call late Wed. afternoon with more test results, and hopefully a recommended course of action for the EBV and GVHD (I am beginning to feel like a display for alphabet soup!).
Given all of the above, I will most likely not be in to church for any meetings or such at all this week, and would hope that whatever drug treatment plan is given tomorrow makes a difference by next week. Here’s how you can best pray for us this week:
1) Pray that at least some of the tests are conclusive in their findings, and that the doctor has the wisdom to make the right diagnosis and get me on the proper treatment plan.
2) Pray that we would be able to do whatever treatment he decides on here at home in Maine, and not have to move back to NH to have anything done at Dartmouth, as it has been mentioned a couple of times.
3) Pray for continued frustration with the situation for both Lisa and I. I really don’t want to be admitted again to Dartmouth, as there’s just too many negative feelings and issues to deal with (memories, food, attitudes, etc.), and we are beginning to feel like we could be doing a lot more of these tests and such here in Maine than down in NH, extending every one of our monthly visits and running me down physically and emotionally. Pray that we would be able to keep our heads headed in right direction.
4) Pray that my mouth, which had been getting better, but now has sores all over it again, would begin to heal once again and completely clear up. For the time being, I am back to a liquid and soft foods (mac & cheese, yogurt, pudding, etc.) diet, and have very little taste as the sores have now spread to my tongue, making even talking difficult much of the time.
5) Praise – Even though my mouth is now worse than it was, God saw fit to allow me to have no mouth pain for some time surrounding last Sun. so that I could share in the service, and I have heard from over a dozen people – both within the church family and outside it – that my notes and resource list have already been helpful to many on a number of issues. God is getting glory, even in my weakness!
Thanks for the many continued prayers, support, & encouragement so many of you are sending our way - we really need them.
It now appears that though I am well past the point where a drug reaction would still be having any effect on my body and my skin had cleared up, it is now headed back the other way and beginning to peel again. They are becoming more suspicious that the skin issues, though they may have been instigated by a drug reaction, are now chronic GVHD (graft-vs-host disease), and so they ran some additional tests (more than I care to count) during the day Friday and more on Monday (when I was just supposed to meet with the doctor and learn his recommended plan of action) as a result of seeing the changes between Friday and Monday.
While the PET scan results came back and show no signs of cancer anywhere, it also showed 2 cracked ribs on each side – the left ones almost healed but the right ones pretty fresh. They assume this is from the violent coughing fits I have been having. My bone marrow biopsy results won’t be back until later this week, but they don’t expect anything wrong there with the clean PET scan.
They did find a positive result to the Epstein-Barr virus, but are as of now unsure what to do about it, as there is no treatment for it and the only thing they can do is eliminate my immune suppressant drugs, which may make the skin GVHD wore, as the treatment for that would involve increasing the immune suppressants. The nurse practitioner is to call late Wed. afternoon with more test results, and hopefully a recommended course of action for the EBV and GVHD (I am beginning to feel like a display for alphabet soup!).
Given all of the above, I will most likely not be in to church for any meetings or such at all this week, and would hope that whatever drug treatment plan is given tomorrow makes a difference by next week. Here’s how you can best pray for us this week:
1) Pray that at least some of the tests are conclusive in their findings, and that the doctor has the wisdom to make the right diagnosis and get me on the proper treatment plan.
2) Pray that we would be able to do whatever treatment he decides on here at home in Maine, and not have to move back to NH to have anything done at Dartmouth, as it has been mentioned a couple of times.
3) Pray for continued frustration with the situation for both Lisa and I. I really don’t want to be admitted again to Dartmouth, as there’s just too many negative feelings and issues to deal with (memories, food, attitudes, etc.), and we are beginning to feel like we could be doing a lot more of these tests and such here in Maine than down in NH, extending every one of our monthly visits and running me down physically and emotionally. Pray that we would be able to keep our heads headed in right direction.
4) Pray that my mouth, which had been getting better, but now has sores all over it again, would begin to heal once again and completely clear up. For the time being, I am back to a liquid and soft foods (mac & cheese, yogurt, pudding, etc.) diet, and have very little taste as the sores have now spread to my tongue, making even talking difficult much of the time.
5) Praise – Even though my mouth is now worse than it was, God saw fit to allow me to have no mouth pain for some time surrounding last Sun. so that I could share in the service, and I have heard from over a dozen people – both within the church family and outside it – that my notes and resource list have already been helpful to many on a number of issues. God is getting glory, even in my weakness!
Thanks for the many continued prayers, support, & encouragement so many of you are sending our way - we really need them.
Sunday, March 1, 2009
Suffering Resource List
Click here to view the list of resources on the subject of suffering that was handed out after the service this Sun. March 1.
Lessons on Sufering from Sun. 3/1/09
Click here to view the notes from my presentation in the Sun. service at our church on lessons I have learned about suffering.
Friday, February 27, 2009
The Bottom Line: Sovereignty - Initially Painful, Ultimately Comforting
The Bottom Line: Sovereignty - Initially Painful, Ultimately Comforting
Read this post from another pastor on the ultimate comfort that can be ours when we internalize the truth of God's sovereignty in the midst of tragedy and trial. Hope you find it as good for your soul as I did for mine!
Read this post from another pastor on the ultimate comfort that can be ours when we internalize the truth of God's sovereignty in the midst of tragedy and trial. Hope you find it as good for your soul as I did for mine!
Thursday, February 26, 2009
appointments moved
Just a note about the schedule change for my appointments that were to be tomorrow. Due to scheduling conflicts on the hospital's end, all of my 1 year checkup stuff will NOT happen tomorrow, but has been postponed to the end of next week. I will have my PET scan on Thu. afternoon March 5, and my annual visit with the doctor on Friday morning, and my 1 year bone marrow biopsy on Fri. afternoon March 6. I should get results on the PET scan by the end of the day on Friday, and bone marrow biopsy results by the end of the following week (Fri. March 14). I will post again when I have these results. I continue to progress in strength and endurance, as well as weight gain, though both are still a atruggle and neither is progressing as much or as quickly as I like. Feels a lot like 2 steps forward and 1 step back.
Saturday, February 21, 2009
things going pretty well...1 year anniversary coming up!
Just a quick update to let you know how things are going. The skin issues are just about all cleared up, and I have new baby-soft skin all over! I am still having some issues with dryness on my palms, but they're manageable if I constantly moisturize. I have learned a lot about skin care, proper hydration, and moisturization.
My mouth is still a bit tender - no crackers yet, but I was able to eat some chips last week if I kept them on the left side of my mouth! I am still having some problems swallowing meat, and have to cut it all up real small. I actually choked pretty badly the other night on some native Maine shrimp (yes, the small ones, and boy were they good!) It was a bit of a scary moment, but I got through it and am being more careful now. The swallowing has improved, but not at the same rate as the skin issues or even the mouth itself.
I have another appointment at Dartmouth this coming Friday Feb. 27, and they are discussing doing a bronchoscopy just to take a look at the upper GI tract and see what is going on in there, but that hasn't been finalized yet. Since Sun.. March 1 is the 1 year anniversary of my 2nd transplant (yeahhhhh!!!!), they will be doing another PET scan and a bone marrow biopsy (possibly doing that a week later, but yet to be determined), and we expect to continue to see clear results from both of those, as we have since the transplant happened. It's amazing to think I'll be at 1 year post-transplant without any signs of cancer in just 1 short week. God has truly been good and faithful.
Please pray for continued good results of the scan & biopsy,that everything would get scheduled in a timely manner, and for continued healing and increased energy and stamina. I will update again when we have some results from the scan & biopsy. Thanks for continuing to check in and pray!
My mouth is still a bit tender - no crackers yet, but I was able to eat some chips last week if I kept them on the left side of my mouth! I am still having some problems swallowing meat, and have to cut it all up real small. I actually choked pretty badly the other night on some native Maine shrimp (yes, the small ones, and boy were they good!) It was a bit of a scary moment, but I got through it and am being more careful now. The swallowing has improved, but not at the same rate as the skin issues or even the mouth itself.
I have another appointment at Dartmouth this coming Friday Feb. 27, and they are discussing doing a bronchoscopy just to take a look at the upper GI tract and see what is going on in there, but that hasn't been finalized yet. Since Sun.. March 1 is the 1 year anniversary of my 2nd transplant (yeahhhhh!!!!), they will be doing another PET scan and a bone marrow biopsy (possibly doing that a week later, but yet to be determined), and we expect to continue to see clear results from both of those, as we have since the transplant happened. It's amazing to think I'll be at 1 year post-transplant without any signs of cancer in just 1 short week. God has truly been good and faithful.
Please pray for continued good results of the scan & biopsy,that everything would get scheduled in a timely manner, and for continued healing and increased energy and stamina. I will update again when we have some results from the scan & biopsy. Thanks for continuing to check in and pray!
Saturday, February 7, 2009
my book list for Christmas and birthdays
This is a link to my new wish list on Amazon to be used for birthday, Christmas, or any other gift-giving occasion. I have just updated it, and if you buy something from the list, you should be able to indicate so on the list so no one else buys the same thing. If it doesn't work, let me know.
Tuesday, February 3, 2009
headed for home!
We had a great appointment with the transplant doc here at Dartmouth, and he was overwhelmed, to say the least, with the progress I've made since Friday, as was the dermatologist who saw me on Friday, too. My skin has cooled off, moistened up, quit flaking, and loosened up, and I am sleeping better, too, on top of it all! We were expecting to have to stay until he saw us again at the end of the week, but he was comfortable enough with the progress I've made that he's reasonably sure I am dealing with a second drug reaction, probably brought on by the first drug reaction a month ago. Since I have progressed so well on the treatment regimen I began on Fri., and hey have made some changes to the drugs I had been taking, I will start tapering off the steroids they put me on Friday at the end of this week, and will hopefully not have any issues getting off of them.
So, we are excited to be headed back home to Maine, after just a week here that could have been a lot longer, and we are thankful that God has seen fit to get us back home at this point! I will have to continue to twice daily topical creme treatments and the mouthwash, but my mouth is feeling better and I am beginning to eat more. I have, however, lost about 15 pounds, and am now under 180, so I need to ut some weight back on (again!) and am making efforts with whole milk and whole milk products, and just eating as much as my mouth will allow me to. It is nice to be able to eat some simple meals with the rest of the family. For the time being you can pray for the following:
1) that I would be able to gain about 10 pounds as quickly as possible
2) that the drug reaction diagnosis and treatments would be correct and effective
3) that we would be able to get back home and get settled back in quickly
4) that I would gain back some energy and stamina soon
5) that we wouldn't miss anything that God has for us during this leg of the journey
Thanks again for all of your continued love, concern, prayers, and encouragement. They have kept us going when our circumstances seemed bleak. Keep it up!
So, we are excited to be headed back home to Maine, after just a week here that could have been a lot longer, and we are thankful that God has seen fit to get us back home at this point! I will have to continue to twice daily topical creme treatments and the mouthwash, but my mouth is feeling better and I am beginning to eat more. I have, however, lost about 15 pounds, and am now under 180, so I need to ut some weight back on (again!) and am making efforts with whole milk and whole milk products, and just eating as much as my mouth will allow me to. It is nice to be able to eat some simple meals with the rest of the family. For the time being you can pray for the following:
1) that I would be able to gain about 10 pounds as quickly as possible
2) that the drug reaction diagnosis and treatments would be correct and effective
3) that we would be able to get back home and get settled back in quickly
4) that I would gain back some energy and stamina soon
5) that we wouldn't miss anything that God has for us during this leg of the journey
Thanks again for all of your continued love, concern, prayers, and encouragement. They have kept us going when our circumstances seemed bleak. Keep it up!
Monday, February 2, 2009
update Mon. 2/2/09
It's been a while since I blogged, so I thought I'd update you all on the past week. I had a regular appt. scheduled for this past Friday down at Dartmouth, but due to continued skin problems, we called on Monday, and were told to come in on Thursday for some tests and consult visits with ENT and dermatology specialists, as well as an oral and skin biopsies. All of these things were in an effort to identify whether the continued skin issues - which had begun to resolve themselves and then, about a week ago, began to come back again - are the result of a drug reaction or if I have somehow gotten a case of chronic graft-vs-host disease (cGVHD).
Several of the symptoms I was having seemed to fit best (some of them really only) with cGVHD, but the 1st of the 2 biopsies to come back (the oral one) was inconclusive, and the dermatology folks felt strongly that it was a drug reaction, as did the ENT doc, though not as strongly.
So, they decided to treat me as if this is a drug reaction for the time being, and plan to see me again Tue. afternoon, when they should have the results of my skin biopsy. Between Fri. and Tue., they have put me on both oral steroid pills and a steroid skin crème, which has to be applied after having cool compresses applied to my whole body for 15 mins. Or so 2-3 times a day. In the weather we're having, it's something like torture! My skin has already improved A LOT, and I have felt some increase in my stamina and energy level over the weekend. At the visit tomorrow, they will reevaluate me, look at the progress, talk about the result of the skin biopsy and make a plan as to what to do next.
There is discussion about starting me on a blood treatment called ECP, or photopheresis, where my blood is removed from one arm, pheresed (or spun and separated) for the T-cells (immune cells), which are then run under UV light, aqnd then all of the blood, including the UV treated T-cells, are put back into my bloodstream via the other arm. This would have to be done twice a week for aqt least a month, and then once a week for at least another month, and then less often after that. The big problem is that it does not appear there is a photopheresis unit anywhere in Maine as of yet, though I heard today there is actually one coming to Brunswick later this year, perhaps as early as summer.
For the time being, you can pray for the following:
1) that the current diagnosis of a drug reaction is correct.
2) that the drug changes and topical treatments would have had enough effect between now and Tuesday that I can "continue course" with this treatment plan. Pray that the recommendation tomorrow is NOT to begin ECP treatments, as that would require us to pack up house and home AGAIN and move bqck to Claremont with Lisa's folks for at least a month or two.
3) Wisdom and discernment for the team working on my case
4) Continued patience and endurance for myself and Lisa as we deal with the "fall-out" of all of the treatments
5) That I would have a good attitude in the midst of this, and would not give up hope of healing and a return to some semblance of normal
It looks as if I will need to remain here through at least the end of next week at this point. I will update you all after the appointment on Tue., especially if we are able to come home sooner (which would be great, but we're not expecting it right now!). Thanks again for checking in and keeping us in prayer.
Several of the symptoms I was having seemed to fit best (some of them really only) with cGVHD, but the 1st of the 2 biopsies to come back (the oral one) was inconclusive, and the dermatology folks felt strongly that it was a drug reaction, as did the ENT doc, though not as strongly.
So, they decided to treat me as if this is a drug reaction for the time being, and plan to see me again Tue. afternoon, when they should have the results of my skin biopsy. Between Fri. and Tue., they have put me on both oral steroid pills and a steroid skin crème, which has to be applied after having cool compresses applied to my whole body for 15 mins. Or so 2-3 times a day. In the weather we're having, it's something like torture! My skin has already improved A LOT, and I have felt some increase in my stamina and energy level over the weekend. At the visit tomorrow, they will reevaluate me, look at the progress, talk about the result of the skin biopsy and make a plan as to what to do next.
There is discussion about starting me on a blood treatment called ECP, or photopheresis, where my blood is removed from one arm, pheresed (or spun and separated) for the T-cells (immune cells), which are then run under UV light, aqnd then all of the blood, including the UV treated T-cells, are put back into my bloodstream via the other arm. This would have to be done twice a week for aqt least a month, and then once a week for at least another month, and then less often after that. The big problem is that it does not appear there is a photopheresis unit anywhere in Maine as of yet, though I heard today there is actually one coming to Brunswick later this year, perhaps as early as summer.
For the time being, you can pray for the following:
1) that the current diagnosis of a drug reaction is correct.
2) that the drug changes and topical treatments would have had enough effect between now and Tuesday that I can "continue course" with this treatment plan. Pray that the recommendation tomorrow is NOT to begin ECP treatments, as that would require us to pack up house and home AGAIN and move bqck to Claremont with Lisa's folks for at least a month or two.
3) Wisdom and discernment for the team working on my case
4) Continued patience and endurance for myself and Lisa as we deal with the "fall-out" of all of the treatments
5) That I would have a good attitude in the midst of this, and would not give up hope of healing and a return to some semblance of normal
It looks as if I will need to remain here through at least the end of next week at this point. I will update you all after the appointment on Tue., especially if we are able to come home sooner (which would be great, but we're not expecting it right now!). Thanks again for checking in and keeping us in prayer.
Monday, January 12, 2009
you've never seen a reaction like this one!
Well, while it has been good to be back home, not all has gone as planned. I knew when I came home I was having a reaction to one of the drugs I received while I was an inpatient at Dartmouth over New Year's. It was only this past weekend that I began to understand how serious it was When I received this same drug last time, just after my 2nd transplant, and had a very similar reaction, it subsided in about a week, so I didn't think much of the skin issues I'd been having this past week. However, I woke up on Sat. with pain in my mouth, and thought "this was not part of the deal last time!" I called the doc at Dartmouth this morning, and they wanted me to see the oncologist in Brunswick ASAP, so we went down there this afternoon (yes, all of us, as Lisa wanted to hear what was said, and the 2 kids love seeing all of Daddy's doctors!)
They have come to the consensus that I am having a very extreme (and very rare, but previously documented) reaction to one of the 2 antibiotics they gave me while I was hospitalized. My skin has been drying, cracking, and peeling, and while that has started to resolve itself, it has also spread to my mouth this time, causing swelling of my tongue, and ulcers on the inside of my mouth such that it is difficult to drink, much less eat. As long as nothing is in my mouth, I have very little pain! How's that for a weight loss plan? I received IV fluids today, as they think I am dehydrated due to the pain of getting fluids down, and I also received some IV steroids to help with the swelling and inflammation. I have to return tomorrow morning to Brunswick to repeat the treatment, and they will then decide if I need to return Fri. for a third and final treatment. They are also giving me a different med (that I am about to try as soon as I am done typing this!) for sleep, and I hope this one works. I have not fallen asleep before any night in the last week, and until yesterday, had gotten no more than 3 hours of sleep any night, with 2 nights during the week being completely sleepless. They are not sure if this is related to the drug reaction or not, but think this new med should make me sleep in any case. If all goes according to their plan, I should be feeling better by the end of the week, so I am hoping and praying that this treatment plan works...and soon. Please pray with me toward that end.
They have come to the consensus that I am having a very extreme (and very rare, but previously documented) reaction to one of the 2 antibiotics they gave me while I was hospitalized. My skin has been drying, cracking, and peeling, and while that has started to resolve itself, it has also spread to my mouth this time, causing swelling of my tongue, and ulcers on the inside of my mouth such that it is difficult to drink, much less eat. As long as nothing is in my mouth, I have very little pain! How's that for a weight loss plan? I received IV fluids today, as they think I am dehydrated due to the pain of getting fluids down, and I also received some IV steroids to help with the swelling and inflammation. I have to return tomorrow morning to Brunswick to repeat the treatment, and they will then decide if I need to return Fri. for a third and final treatment. They are also giving me a different med (that I am about to try as soon as I am done typing this!) for sleep, and I hope this one works. I have not fallen asleep before any night in the last week, and until yesterday, had gotten no more than 3 hours of sleep any night, with 2 nights during the week being completely sleepless. They are not sure if this is related to the drug reaction or not, but think this new med should make me sleep in any case. If all goes according to their plan, I should be feeling better by the end of the week, so I am hoping and praying that this treatment plan works...and soon. Please pray with me toward that end.
Monday, January 5, 2009
headed home!
I have improved enough that we are headed home to Maine today! I am still not quite where I was before being admitted last Wednesday, but almost, and I feel well enough to travel, so we're flying the coop here in Claremont and heading home! We hope to be home for dinner, and I'll update later in the week as to how things go once we land back at home. Keep praying as I (again!) recover.
Friday, January 2, 2009
better today!
After getting a much needed night of sleep (as much as you can get in a hospital!), I am feeling better today and have had no fever since yesterday morning. The docs determined today that I have human metapneumovirus, which is in the same family as RSV, and can cause bronchitis and/or pneumonia. There is now disagreement as to whether I actually have (or had?) pneumonia, but with my sinus symptoms and the cough, they needed to check things out. My reading on this particular virus says that almost all infants have it at some point, most without symptoms, and others with cold or flu-like symptoms, and their body fights it off naturally. Not so for me, who is still building a functioning immune system. Well, as they say, Rome wasn't built in a day, either, and the docs have told me it would be at least a full year before I had even a minimally functioning immune system. So, we will pray for no fever tonight, and then they should let me out of "Hotel Hitchcock" tomorrow - on Lisa's birthday. They have already asked us, if I am released tomorrow to stay in Claremont until Monday to make sure nothing else pops up. I'll gladly do it if it means being out of here!
Thursday, January 1, 2009
what a way to start the New Year!
I sit and write tonight from the friendly confines of Dartmouth...again. After celebrating Christmas with Lisa's family on Monday, I came here for a regularly scheduled doctor's visit yesterday, and with a cough that had not gotten better in 2 weeks, they ordered a chest x-ray, which revealed a case of double pneumonia (both lungs). I was somewhat surprised because I had not had any fevers and felt pretty good, but all of that changed after getting checked in here yesterday afternoon. I spiked a high fever last night and vomited, and slept very little all night. I felt a little better earlier today, but am now feeling like the fever is returning, and I have been unable to eat anything all day. Please pray that the docs can figure out what's going on, treat it properly, and get me out of here quickly.
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