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.
Wednesday, March 25, 2009
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.
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