Nothing special has been going on, just the ordinary business of living - for which we are so thankful. It is the crises of life that make us appreciate these ordinary days; nothing to be taken for granted.
Doug had a severe stiff neck and pain the past few days. For a day or two he was thinking the cancer had attacked his cervical vertebrae. I really didn't think so. Now his range of movement is much better and the pain is less. It is just an ordinary stiff neck from sleeping in the wrong position. What a glorious word: ordinary.
I have been following a lovely blog written by Kara, a courageous young mother of four small children. She has advanced cancer. The blog is Mundane Faithfulness. You can read the blog and subscribe by clicking here: mundanefaithfulness.com.
In today's post she has a prayer I want to quote:
"Thank you Jesus, thank you. I take hold of this peace with utter gratitude. It feels like such a gift. I'm not panicked, but only have moments, small moments of anxiety. You have met me this week, you have met my man, my children, my moments and waking hours. You have given me work to do today. You have given me thoughts to think and wonder to observe. You have been my companion, my constant companion. You hear my begging: help, oh help, please help. You have helped. This is the greatest gift of all. Peace. Meet me in that small room with peace. Help me to show that unexplainable peace to my doctor. Help me to extend him your peace when he meets the end of his options to save this young mama. Help him not to despair, or to think I'm despairing. Help him not to carry the tears that will come. Help us to love him. Thank you Jesus for all those that are in constant prayer. Thank you for sleep. Thank you."
What a beautiful compassionate thing, to pray for her doctor, that he won't despair when he can't save her life. I look forward to reading Kara's blog each day.
Thank you Jesus, for this ordinary day.
Love to all.
Wednesday, March 12, 2014
Friday, February 21, 2014
Stable kidneys, MM still in remission
Last week Doug saw the myeloma specialist in Denver. The Lambda light chains keep rising: one month ago it was 138 mg/L. This time it was 151. Although that is high, the Kappa/Lambda ratio is .22 which is not too bad. So the specialist says the MM is still in remission; and the rising light chains are due to the kidney disease. He wants to keep seeing Doug every two months.
We saw the nephrologist last Wednesday in Fairplay. She thought Doug's blood counts were good, and the ankle swelling has not changed. The creatinine is up to 1.21 (last month was 1.10) but not bad yet. Serum albumin is low but tolerable for now. Since Doug is losing protein in his urine, his liver is working hard to keep the albumin (protein) level in his blood. The nephrologist explained that the liver also makes the clotting factor, so Doug is at risk for clots. The revlimid also carries a clot risk. She is satisfied that the low dose aspirin is adequate for now. On long drives compression stockings would be good. We don't plan on flying anywhere.
The protein/creatinine ratio is down just a hair, from 5131 last month to 5122. Since it has not risen, the nephrologist won't start him on Prograf yet. She wants to keep doing monthly lab work, and she wants to see Doug in three months. Unless the creatinine rises, in which case she might opt to see him sooner.
So overall, we are happy. Still in remission, and stable kidney disease. Doug looks and feels pretty good. His knee pain is much less. He did go to the orthopod who took x-rays of the knee; it showed arthritis. No treatment needed for now. These are good times.
Praise the Lord!
We saw the nephrologist last Wednesday in Fairplay. She thought Doug's blood counts were good, and the ankle swelling has not changed. The creatinine is up to 1.21 (last month was 1.10) but not bad yet. Serum albumin is low but tolerable for now. Since Doug is losing protein in his urine, his liver is working hard to keep the albumin (protein) level in his blood. The nephrologist explained that the liver also makes the clotting factor, so Doug is at risk for clots. The revlimid also carries a clot risk. She is satisfied that the low dose aspirin is adequate for now. On long drives compression stockings would be good. We don't plan on flying anywhere.
The protein/creatinine ratio is down just a hair, from 5131 last month to 5122. Since it has not risen, the nephrologist won't start him on Prograf yet. She wants to keep doing monthly lab work, and she wants to see Doug in three months. Unless the creatinine rises, in which case she might opt to see him sooner.
So overall, we are happy. Still in remission, and stable kidney disease. Doug looks and feels pretty good. His knee pain is much less. He did go to the orthopod who took x-rays of the knee; it showed arthritis. No treatment needed for now. These are good times.
Praise the Lord!
Saturday, January 25, 2014
No treatment for kidney disease (yet)
We saw the nephrologist on January 24. She looked over the last three months of lab data. Doug's kidney function is still good, despite the leaking of protein. His creatinine is within normal limits. She gave us this analogy: Compare the kidney to a bucket. The bucket has a hole in it and is leaking, but it still can be used to carry water. So far, his kidneys are doing the job of filtering the blood.
The marker the nephrologist is using is the protein/creatinine ratio in the urine. Normal limits are from 0 to 200. Here are Doug's numbers:
on 10-23-13 it was 4868
11-26-13 5653
12-26-13 5625
1-15-14 5131
She wants to wait one more month to see if there is a definite trend upwards before starting him on Prograf. Because his kidney function is okay, it buys us some waiting time. Right now, the only part of the blood lab work that is off is the low albumin level of the blood.
I like the way the nephrologist has of explaining things. I also like her decision to wait and see a definite trend before starting Doug on a drug that suppresses the immune system. Doug does have some ankle swelling; not good but not severe yet.
The only pain he is having right now is in his right knee. None of the previous scans show any MM involvement in that region; I really think that pain is due to arthritis. He can't take a lot of meds because of possible kidney damage, so he is taking Tylenol and using a heating pad and a cane at times. If it doesn't go away we might need to address that. One thing at a time please.
We continue to count our many blessings.
Love to all.
The marker the nephrologist is using is the protein/creatinine ratio in the urine. Normal limits are from 0 to 200. Here are Doug's numbers:
on 10-23-13 it was 4868
11-26-13 5653
12-26-13 5625
1-15-14 5131
She wants to wait one more month to see if there is a definite trend upwards before starting him on Prograf. Because his kidney function is okay, it buys us some waiting time. Right now, the only part of the blood lab work that is off is the low albumin level of the blood.
I like the way the nephrologist has of explaining things. I also like her decision to wait and see a definite trend before starting Doug on a drug that suppresses the immune system. Doug does have some ankle swelling; not good but not severe yet.
The only pain he is having right now is in his right knee. None of the previous scans show any MM involvement in that region; I really think that pain is due to arthritis. He can't take a lot of meds because of possible kidney damage, so he is taking Tylenol and using a heating pad and a cane at times. If it doesn't go away we might need to address that. One thing at a time please.
We continue to count our many blessings.
Love to all.
Sunday, December 22, 2013
Rising light chains but okay
We saw Dr. M the myeloma specialist last Wednesday. Doug's Lambda light chains have been rising steadily the last three months and I was concerned. However, the Kappa/Lambda ratio although jumping around hovers near normal. Dr. M says not to worry right now about the rising light chains. He says the Lambda light chains are sensitive to kidney issues, so some fluctuations can be expected. If the light chains go to 500 he might start to worry. The latest number is 123.17 mg/L. So he says the MM is still in remission!
Doug's creatinine is 1.16, ANC is 1.8, both good numbers for him. Total protein is high at 154.9 mg/dL but it came down from the month before. Overall, not a bad picture on paper.
We will see the MM specialist again in two months, and the nephrologist in late January. She will tell us if Doug needs treatment for the kidney disease.
We are enjoying our daily life and looking forward to Christmas at our son's home in Denver. Our oldest grandson who is in the Air Force will be home for Christmas this year. With the youngest three grandkids off to college next year, we will cherish every chance to get them all together now.
Back in 2008 when Doug was diagnosed with Multiple Myeloma, I didn't think he would be alive 5 1/2 years later. Thanks to new improved drugs, a wonderful specialist, and most of all the grace of God, I have my husband doing pretty well for this disease. I am so thankful.
May we all remember that Christ is the reason for Christmas.
MERRY CHRISTMAS to all!
Doug's creatinine is 1.16, ANC is 1.8, both good numbers for him. Total protein is high at 154.9 mg/dL but it came down from the month before. Overall, not a bad picture on paper.
We will see the MM specialist again in two months, and the nephrologist in late January. She will tell us if Doug needs treatment for the kidney disease.
We are enjoying our daily life and looking forward to Christmas at our son's home in Denver. Our oldest grandson who is in the Air Force will be home for Christmas this year. With the youngest three grandkids off to college next year, we will cherish every chance to get them all together now.
Back in 2008 when Doug was diagnosed with Multiple Myeloma, I didn't think he would be alive 5 1/2 years later. Thanks to new improved drugs, a wonderful specialist, and most of all the grace of God, I have my husband doing pretty well for this disease. I am so thankful.
May we all remember that Christ is the reason for Christmas.
MERRY CHRISTMAS to all!
Wednesday, October 23, 2013
Membranous Glomerulonephritis
It has been a busy two days, but good ones. Yesterday we went to the Denver myeloma specialist. We already knew the two worst cancer-related causes of the kidney disease had been ruled out by the biopsy. Yesterday we learned the name of Doug's kidney disease: membranous glomerulonephritis. It can be identified only on biopsy. Call it MGN for short. Neither the cancer doc or the kidney doc think it is caused by the myeloma. So the full name is "idiopathic membranous glomerulonephritis." Idiopathic just means unknown cause. The glomeruli are the filters of the kidney.
The myeloma specialist has a good sense of humor. He said "If a dog has fleas, it can still get ticks." So having cancer doesn't mean you can't still get an entirely unrelated disease. I love a doc who laughs. He said MGN isn't in his expertise, so he will let the nephrologist take care of that.
The good news from the myeloma specialist is the cancer is still under control. Doug will remain on the maintenance regime of 5 mg Revlimid every other day, and he will resume Zometa at a lower dose and frequency: 2 mg every six months. The Zometa is good because it reduces the chance of fractures, and bad because it can harm the kidneys, so it is a balancing act. Another bit of good news is the creatinine level is 1.2.
Doug will get a blood draw for a MM panel every two months, and see the specialist every two months.
Today we went to see the nephrologist. She spent a big chunk of time with us explaining everything. She said the clinic owners want her to spend less time on patient visits so she can cram more in, but she is ignoring that directive. Good doc!
She said that MGN is not an uncommon kidney disease. 50% of patients go into spontaneous remission. Maybe Doug will be fortunate enough to fall into that category! The other half will eventually need treatment, with 20% progressing to kidney failure if treatment doesn't work. Treatment would be the immunosuppressive drug Prograf and dexamethasone.
The biopsy showed 30% of Doug's kidneys are permanently damaged - "globally sclerotic." Another name for scarring or fibrosis. The remaining 70% is capable of doing the job. Thankfully God made us with extra capacity.
She feels Doug does not need treatment yet. It is better to wait and monitor him; the drugs have side effects so she doesn't want to use them unless necessary. As long as the creatinine level stays under 2 and the protein level stays under 4 she will just watch. Right now his creatinine is 1.2 and his protein in urine is 3.4, so that is good.
Doug has to take his blood pressure twice a week at home and record it. And watch for ankle swelling. Once a month he will get a pee test and a blood draw for a basic metabolic panel. She will see him every three months for now.
He has some dietary restrictions but nothing dramatic. Not more than 4 servings animal protein per day. One serving is the size of a deck of cards. Drink at least 2 quarts fluid a day. Low sodium diet which we try to follow anyway. Carbs are okay.
We are happy with all this. The awful waiting period is over, we know what Doug has and a plan to follow. We have two wonderful caring specialists who take time to share their knowledge. God has blessed us and we are thankful.
Love to all.
The myeloma specialist has a good sense of humor. He said "If a dog has fleas, it can still get ticks." So having cancer doesn't mean you can't still get an entirely unrelated disease. I love a doc who laughs. He said MGN isn't in his expertise, so he will let the nephrologist take care of that.
The good news from the myeloma specialist is the cancer is still under control. Doug will remain on the maintenance regime of 5 mg Revlimid every other day, and he will resume Zometa at a lower dose and frequency: 2 mg every six months. The Zometa is good because it reduces the chance of fractures, and bad because it can harm the kidneys, so it is a balancing act. Another bit of good news is the creatinine level is 1.2.
Doug will get a blood draw for a MM panel every two months, and see the specialist every two months.
Today we went to see the nephrologist. She spent a big chunk of time with us explaining everything. She said the clinic owners want her to spend less time on patient visits so she can cram more in, but she is ignoring that directive. Good doc!
She said that MGN is not an uncommon kidney disease. 50% of patients go into spontaneous remission. Maybe Doug will be fortunate enough to fall into that category! The other half will eventually need treatment, with 20% progressing to kidney failure if treatment doesn't work. Treatment would be the immunosuppressive drug Prograf and dexamethasone.
The biopsy showed 30% of Doug's kidneys are permanently damaged - "globally sclerotic." Another name for scarring or fibrosis. The remaining 70% is capable of doing the job. Thankfully God made us with extra capacity.
She feels Doug does not need treatment yet. It is better to wait and monitor him; the drugs have side effects so she doesn't want to use them unless necessary. As long as the creatinine level stays under 2 and the protein level stays under 4 she will just watch. Right now his creatinine is 1.2 and his protein in urine is 3.4, so that is good.
Doug has to take his blood pressure twice a week at home and record it. And watch for ankle swelling. Once a month he will get a pee test and a blood draw for a basic metabolic panel. She will see him every three months for now.
He has some dietary restrictions but nothing dramatic. Not more than 4 servings animal protein per day. One serving is the size of a deck of cards. Drink at least 2 quarts fluid a day. Low sodium diet which we try to follow anyway. Carbs are okay.
We are happy with all this. The awful waiting period is over, we know what Doug has and a plan to follow. We have two wonderful caring specialists who take time to share their knowledge. God has blessed us and we are thankful.
Love to all.
Tuesday, October 15, 2013
Kidney Biopsy Results
We got an email from the myeloma specialist's nurse navigator - we have the results from the kidney biopsy:
"The biopsy doesn't show either of the two things (amyloid or light chain deposition disease) we were looking for. Dr. M asks that Doug follow up with Dr. F (the nephrologist). She will want to review the findings and impart her expertise on what is causing the proteinuria and what needs to be done about it."
I am greatly relieved it is not amyloidosis. We are not dancing in the streets yet, because there is still a kidney problem, but we are very glad the results are in and we can move forward. Praise God.
Next step is the visit with the nephrologist, set for October 23. We hope and pray she will discover the cause of the proteinuria - and that it will be treatable.
The 24 hour urine test showed Doug's protein in the urine was 3191. Normal range is 42 to 225. Not sure what the units are called but that is 14 times normal. His creatinine clearance was 61 ml/min which is low. Normal range is 70 to 130. One good thing is there was no apparent M-spike.
The most common causes of proteinuria are diabetes and hypertension. Doug has neither. Hope Dr. F is a good detective.
To find out more about proteinuria click here.
Love to all.
Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. Isaiah 41:10
"The biopsy doesn't show either of the two things (amyloid or light chain deposition disease) we were looking for. Dr. M asks that Doug follow up with Dr. F (the nephrologist). She will want to review the findings and impart her expertise on what is causing the proteinuria and what needs to be done about it."
I am greatly relieved it is not amyloidosis. We are not dancing in the streets yet, because there is still a kidney problem, but we are very glad the results are in and we can move forward. Praise God.
Next step is the visit with the nephrologist, set for October 23. We hope and pray she will discover the cause of the proteinuria - and that it will be treatable.
The 24 hour urine test showed Doug's protein in the urine was 3191. Normal range is 42 to 225. Not sure what the units are called but that is 14 times normal. His creatinine clearance was 61 ml/min which is low. Normal range is 70 to 130. One good thing is there was no apparent M-spike.
The most common causes of proteinuria are diabetes and hypertension. Doug has neither. Hope Dr. F is a good detective.
To find out more about proteinuria click here.
Love to all.
Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand. Isaiah 41:10
Saturday, October 12, 2013
No Results Yet
Still waiting for results from Doug's kidney biopsy. Waiting for the other shoe to fall. I understand the myeloma doc and the nephrologist need to talk to each other, and thus the delay in finding out anything. So we are trying to be patient. Trying but not succeeding all the time. I'll give it until Tuesday and then will start pestering.
We are trying to keep busy. Doug has been tinkering in his garage workshop, inventing projects. I have been trying new recipes, reading, going for walks. Our hikes together are a thing of the past - Doug is having pain in his left hip - the one that had radiation treatments. He can walk to the corner mailbox but not around the block on most days.
I don't intend to be complaining. We both are counting our blessings and we have so much to be thankful for. I need to write more things in my gratitude journal.
The other day we got a bill from the Denver hospital for $36,000. The date corresponded with Doug's bone marrow biopsy. A phone call to the financial office told us it was an error. For some unknown reason they were not showing our supplemental policy; they corrected their information. The $36,000 was a Medicare co-pay for the bone marrow biopsy. The kidney biopsy cost will be even higher with the radiology guidance. The costs of battling myeloma (or any other cancer) are so high, with procedures and astronomical charges for new chemo drugs. I'm sure glad we have good insurance!
Doug is going with me this afternoon to take a meal to dear friends. Doing something for someone else is good medicine.
Love to all.
We are trying to keep busy. Doug has been tinkering in his garage workshop, inventing projects. I have been trying new recipes, reading, going for walks. Our hikes together are a thing of the past - Doug is having pain in his left hip - the one that had radiation treatments. He can walk to the corner mailbox but not around the block on most days.
I don't intend to be complaining. We both are counting our blessings and we have so much to be thankful for. I need to write more things in my gratitude journal.
The other day we got a bill from the Denver hospital for $36,000. The date corresponded with Doug's bone marrow biopsy. A phone call to the financial office told us it was an error. For some unknown reason they were not showing our supplemental policy; they corrected their information. The $36,000 was a Medicare co-pay for the bone marrow biopsy. The kidney biopsy cost will be even higher with the radiology guidance. The costs of battling myeloma (or any other cancer) are so high, with procedures and astronomical charges for new chemo drugs. I'm sure glad we have good insurance!
Doug is going with me this afternoon to take a meal to dear friends. Doing something for someone else is good medicine.
Love to all.
"One act of thanksgiving, when things go wrong with us, is worth a thousand thanks when things are agreeable to our inclinations." St. John of Avila
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