Terry called me while Steve was driving them home from their appointment with Dr. Hu this afternoon. They have terrific news: the results of the MRI were the best they could have hoped for. There is no sign of tumor or cancer cells and the area of swelling has decreased. The old tumor area has shrunk grossly by about a third compared to their older scans. They are very happy!
More good news.... Steve had blood work last Friday and his creatinine level improved from 2.7 to 2.5, AND blood work from two days ago showed even more improvement at 2.4. He may be a bit slow healing, but I'm glad he is finally moving in the right direction. BUN levels are now on the low side at 8. Platelets are near normal at 142,000, Yea!
The results of all this good news: there is no hurry to start the maintenance chemotherapy. They will give Steve's kidneys a little more time to heal. They see Dr. Hu in two weeks and will decide when to start the chemo after then. Steve can also have his teeth cleaned now that his radiation is done.
Earlier this week Steve turned in his 24 hour urine collection and then Wednesday had his kidney ultrasound. He doesn't get the results of those tests until he sees Dr. Ayuste, the nephrologist, next Wednesday. His next blood test isn't for another week and a half.
Steve says work continues to go well but he still feels fatigued at night. Terry stays busy with the boys and taking care of them all.
Friday, April 27, 2012
Wednesday, April 18, 2012
Acute Renal Failure
I haven't talked to Steve or Terry for a while until this evening. Steve has continued to work full time and he is doing well at work and feeling all right overall. He still doesn't have much appetite and eats lightly. He says most food just doesn't interest him. He says the constipation has been a persistent problem and even though his nausea is better, he still has some upset stomach. Dr. Cox says it's likely a combination of the leftover chemo, the kidney problem and the constipation causing the upset stomach.
Yesterday, Steve had more blood work done and he talked to Dr. Cox and the nephrologist today. The good news: blood platelets are approaching normal at 111,000 and much improved. Also, his BUN levels improved and are at the high end of normal at 20. The bad news: his creatinine levels have not improved at 2.7, indicating his kidneys still are not functioning fully. The nephrologist thought they should be close to normal by now if the problem was dehydration from the prior nausea. So, he wants to check out Steve's kidneys more closely to see why they are still impaired. Steve is to do a 24 hour urine test and he is scheduled next Wednesday for an ultrasound, plus more blood tests. When pushed, the nephrologist said Steve has acute renal failure (acute means sudden onset, renal means kidneys) but he doesn't know why yet. We hope the tests next week will tell him more.
In the meantime, Steve is in a funk after hearing today's news. He is sick and tired of tests and appointments. He just wants to concentrate on life, work and family and all this about his kidneys is getting in the way. Recently, Lesley and I were sending e-mails about glioblastoma multiforme survivor stories and most of them talked about how helpful support groups had been to them. I suggested Steve might find a support group helpful because this business of being sick (and terminally so) is too much to handle alone. Even though all of us love him and want to help, there is only so much we can know about what he is going through. I wonder if Cedars Sinai or UCLA has a group. We'll have to investigate further.
The MRI scheduled for Friday has been postponed a week. Steve has every other Friday off of work and he was scheduled to work this Friday. He's off work next week so he will have his MRI and see Dr. Hu then.
Yesterday, Steve had more blood work done and he talked to Dr. Cox and the nephrologist today. The good news: blood platelets are approaching normal at 111,000 and much improved. Also, his BUN levels improved and are at the high end of normal at 20. The bad news: his creatinine levels have not improved at 2.7, indicating his kidneys still are not functioning fully. The nephrologist thought they should be close to normal by now if the problem was dehydration from the prior nausea. So, he wants to check out Steve's kidneys more closely to see why they are still impaired. Steve is to do a 24 hour urine test and he is scheduled next Wednesday for an ultrasound, plus more blood tests. When pushed, the nephrologist said Steve has acute renal failure (acute means sudden onset, renal means kidneys) but he doesn't know why yet. We hope the tests next week will tell him more.
In the meantime, Steve is in a funk after hearing today's news. He is sick and tired of tests and appointments. He just wants to concentrate on life, work and family and all this about his kidneys is getting in the way. Recently, Lesley and I were sending e-mails about glioblastoma multiforme survivor stories and most of them talked about how helpful support groups had been to them. I suggested Steve might find a support group helpful because this business of being sick (and terminally so) is too much to handle alone. Even though all of us love him and want to help, there is only so much we can know about what he is going through. I wonder if Cedars Sinai or UCLA has a group. We'll have to investigate further.
The MRI scheduled for Friday has been postponed a week. Steve has every other Friday off of work and he was scheduled to work this Friday. He's off work next week so he will have his MRI and see Dr. Hu then.
Wednesday, April 11, 2012
Kidneys are Slowly Stabilizing
Steve and Terry dealt with more lab work today. Terry was following up with the doctors about last week's creatinine level and they asked for another blood draw today to check it all out. So, after work this evening Steve had more blood taken which they treated as "stat" in order to get the results tonight. There had been some talk about possibly needing another hospital stay if the kidney results worsened and Steve didn't like the sound of that! The good news, his kidney numbers have stabilized with the creatinine at 2.7 and BUN down from 24 to 23 indicating a tread towards normal. He is still drinking a ton of water every day. His platelet levels were much improved at 94,000 and are getting closer towards normal, too. He is scheduled for another blood check next week to continue monitoring him.
Work is going well and Steve says he has enough energy to get through a day's work. He notices that he is weaker with his skinny stick legs and arms and he gets winded at the top of a flight of stairs. He says he doesn't notice any problems with language or thinking, he just felt rusty and needed reminding of some of the newer engineer's names last week.
We are approaching the April 20th MRI and subsequent maintenance chemotherapy. The doctors are watching Steve's kidney function closely because of the expected stress of the upcoming chemo.
Work is going well and Steve says he has enough energy to get through a day's work. He notices that he is weaker with his skinny stick legs and arms and he gets winded at the top of a flight of stairs. He says he doesn't notice any problems with language or thinking, he just felt rusty and needed reminding of some of the newer engineer's names last week.
We are approaching the April 20th MRI and subsequent maintenance chemotherapy. The doctors are watching Steve's kidney function closely because of the expected stress of the upcoming chemo.
Saturday, April 7, 2012
Platelets Rising
Steve has the results from his latest lab work with good news on his platelet count and not on his creatinine count: platelets rose to 59,000, closer to normal and showing signs that his bone marrow is recovering from the chemotherapy; creatinine also rose to 2.7 indicating his kidneys are still not functioning fully, despite Steve's continuously drinking fluids. They wanted to discuss the kidney numbers with their nephrologist but he is out of the office until Wednesday, so we don't know what to make of the numbers yet.
Steve finished his first week of work in better shape than Terry or I thought he might. His level of fatigue was quite manageable as long as he rested after work. His upset stomach increased by the end of the week but was mostly controlled with his medications. Overall, he had a great starting week.
I was concerned about any damage to Steve's brain, particularly near the language center, which likely resulted from the tumor, the surgery or the radiation treatment. When he was home, his brain didn't have to work as hard or try to make as many connections as it does at work. I thought he might discover some limitations in his language abilities when working with complex problems at work. Steve acknowledged that he had forgotten some things and has had some small language issues but all he had to do was ask questions and his colleagues helped him out. I'm glad it has not been a problem for him. The brain is good at building new neural pathways and will make new connections to process and retrieve language with exercise. He just has to keep stimulating his brain and I doubt any of us will notice a problem in the future.
Hopefully, Steve will have a quiet couple of weeks leading up to his April 20th MRI and subsequent round of maintenance chemotherapy. Easter is tomorrow and they will have family over for a nice dinner.
Happy Easter and Passover, everyone.
Steve finished his first week of work in better shape than Terry or I thought he might. His level of fatigue was quite manageable as long as he rested after work. His upset stomach increased by the end of the week but was mostly controlled with his medications. Overall, he had a great starting week.
I was concerned about any damage to Steve's brain, particularly near the language center, which likely resulted from the tumor, the surgery or the radiation treatment. When he was home, his brain didn't have to work as hard or try to make as many connections as it does at work. I thought he might discover some limitations in his language abilities when working with complex problems at work. Steve acknowledged that he had forgotten some things and has had some small language issues but all he had to do was ask questions and his colleagues helped him out. I'm glad it has not been a problem for him. The brain is good at building new neural pathways and will make new connections to process and retrieve language with exercise. He just has to keep stimulating his brain and I doubt any of us will notice a problem in the future.
Hopefully, Steve will have a quiet couple of weeks leading up to his April 20th MRI and subsequent round of maintenance chemotherapy. Easter is tomorrow and they will have family over for a nice dinner.
Happy Easter and Passover, everyone.
Wednesday, April 4, 2012
Still Not Normal
Steve had blood drawn on Friday and just received the results: he's not normal yet. (Gak!!)
Blood platelets are created in your bone marrow and are rapidly dividing cells which are particularly susceptible to chemotherapy drugs. Platelets are part of your blood clotting system. Steve's level has continued to drop down from 46,000 to 39,000 making him more likely to bruise or bleed. Dr. Hu says it is part of the after-effects from the chemo and they will continue to monitor it. He is scheduled for another check on Thursday. When you have low platelets you are said to have thrombocytopenia. That's why the doctors get paid the big bucks, because they have long, latin-type words for things.
Creatinine numbers remained at their high level, the same as last week, indicating Steve's kidneys are still damaged. Terry was hoping they would improve this week and was disappointed in the results. I was expecting to hear from Terry today after she talked to the nephrologist but I couldn't reach her. I'll update you as I receive information.
As of yesterday, Steve worked his second day back to work, a nine hour day, and felt a little tired but he was still happy to be working. Today was his day to drive the carpool so I hope he had enough energy at the end of the day to stay safe and not over-tire himself.
Blood platelets are created in your bone marrow and are rapidly dividing cells which are particularly susceptible to chemotherapy drugs. Platelets are part of your blood clotting system. Steve's level has continued to drop down from 46,000 to 39,000 making him more likely to bruise or bleed. Dr. Hu says it is part of the after-effects from the chemo and they will continue to monitor it. He is scheduled for another check on Thursday. When you have low platelets you are said to have thrombocytopenia. That's why the doctors get paid the big bucks, because they have long, latin-type words for things.
Creatinine numbers remained at their high level, the same as last week, indicating Steve's kidneys are still damaged. Terry was hoping they would improve this week and was disappointed in the results. I was expecting to hear from Terry today after she talked to the nephrologist but I couldn't reach her. I'll update you as I receive information.
As of yesterday, Steve worked his second day back to work, a nine hour day, and felt a little tired but he was still happy to be working. Today was his day to drive the carpool so I hope he had enough energy at the end of the day to stay safe and not over-tire himself.
Monday, April 2, 2012
First Day Back to Work
Steve is happy. He returned to work today for the first time since the middle of November about four and a half months ago. I was worried he would get over tired and stress his body trying to keep up with all the activity, but he said it was all right and he was just a little tired overall by the mid-afternoon.
He had carpooled, as was his custom with Scott and Keith, so he was gone from 6:30 am until 6:00 pm. He is still not eating much and took a short mid-morning break to eat a granola bar, then had a light lunch, then a half a sandwich mid-afternoon. He didn't need to lie down to rest. For any of you who don't know, Steve works at computers most of the time and so is not usually physically taxed. This morning he had to check in with the company physician before he could start and Steve said it was just a quick stop as a formality. Then he spent most of the day re-setting passwords and catching up on four months of e-mails and missed work. He said he enjoyed seeing his friends and colleagues again who flocked in to see him and let him know they were happy to see him back at work. He is looking forward to getting into the gist of his work and contributing to his projects again.
As far as nausea goes, he says it gets worse as the day goes on. When I talked to him at 8:30 tonight, he was lying on the couch rubbing his tummy. He says it stays that way until he goes to bed and then is better when he wakes up. He has cut out one of his anti-nausea pills and has decreased the frequency of the other from three times a day to twice a day. He had tried to boost his activity in preparation for starting work by increasing time on the treadmill and felt fine doing so. I found it interesting that Steve couldn't say the word "treadmill" when we were talking.... reminiscent of his original symptom some months ago. I attributed it to being tired after using his brain all day today. I hope it is just a fluke or a "nothing" that just happens to all of us sometimes. I will be curious as he gets stressed and tired from work if it will be more noticeable.
Yea, Steve! Way to go and congratulations on the milestone of returning to work!
He had carpooled, as was his custom with Scott and Keith, so he was gone from 6:30 am until 6:00 pm. He is still not eating much and took a short mid-morning break to eat a granola bar, then had a light lunch, then a half a sandwich mid-afternoon. He didn't need to lie down to rest. For any of you who don't know, Steve works at computers most of the time and so is not usually physically taxed. This morning he had to check in with the company physician before he could start and Steve said it was just a quick stop as a formality. Then he spent most of the day re-setting passwords and catching up on four months of e-mails and missed work. He said he enjoyed seeing his friends and colleagues again who flocked in to see him and let him know they were happy to see him back at work. He is looking forward to getting into the gist of his work and contributing to his projects again.
As far as nausea goes, he says it gets worse as the day goes on. When I talked to him at 8:30 tonight, he was lying on the couch rubbing his tummy. He says it stays that way until he goes to bed and then is better when he wakes up. He has cut out one of his anti-nausea pills and has decreased the frequency of the other from three times a day to twice a day. He had tried to boost his activity in preparation for starting work by increasing time on the treadmill and felt fine doing so. I found it interesting that Steve couldn't say the word "treadmill" when we were talking.... reminiscent of his original symptom some months ago. I attributed it to being tired after using his brain all day today. I hope it is just a fluke or a "nothing" that just happens to all of us sometimes. I will be curious as he gets stressed and tired from work if it will be more noticeable.
Yea, Steve! Way to go and congratulations on the milestone of returning to work!
Subscribe to:
Posts (Atom)