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!
Friday, February 27, 2009
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.
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