Terry had a follow up with the oncologist the other day. We will be adding yet another doctor into the mix, bringing the grand total to 9 doctors he's working with currently. Nine. Can you imagine? Just keeping the names and specialties straight can be a production. This one will be an endocrinologist and will handle the radiation and tweaking thyroid levels.
We haven't heard from this new doc yet, but I find I'm getting a little anxious to get the radiation started and finished. He won't have ongoing radiation like most radiation treatments. There will be a capsule containing the radioactive iodine, and the iodine will travel to any places where thyroid cells may have traveled and kill the cells. He will be hospitalized for 24-48 hours while he's radioactive, and that should be the extent of treatment. From that perspective it should be an easier route for him, but from my perspective, I'd just like to get any other treatments related to the thyroid cancer completed so we can start looking forward instead of continuing to be in a holding pattern.
I've been concerned that his voice is still not strong, but we learned it could be 6-8 weeks before that's back to normal. Hopefully it will be. He claims he's not nauseous feeling all the time like he used to be, but I see he's still making his evening rampages to the fridge and the pantry. I really had hoped that would be a thing of the past. Apparently it was not motivated by thyroid as much as habit. Not sure how I can break that habit, but I can't feel it's good for him to eat in the middle of the night like that.
He is starting to sleep a little better, so that has to help him. It didn't seem possible for him to recover without getting some rest, so maybe that will accelerate the process a little. I know if he had a job he'd be expected to be back at work now, so I need to be mindful that he's not on the same schedule for recovery that others are, even though he is doing very well by all accounts from the oncologist. There still is a colonoscopy to be done, so his year of health fun is not over quite yet. Not quite....
But he is doing better than I think I expected him to when this whole journey began to find out what was wrong. I'm still not confident we've taken care of all of his health problems that can be taken care of, but I'm not going to borrow trouble by worrying. I know I have to remain vigilant so we don't get to this point again. Maybe we won't have to...we've certainly had our share!
Monday, June 28, 2010
Monday, June 21, 2010
To Hurt, or Not To Hurt
I am finding Terry and I have different thoughts about recovery, and those differences primarily revolve around issues of pain. I realize my opinion is someone slanted, as I have a high threshold for pain due to migraines and rheumatoid arthritis. I try to be mindful of that, but I have had laproscopic surgery, so I do have some idea of what that entails.
It's almost two weeks after surgery now, and Terry is still talking about pain. I've tried to have him determine whether it's pain or just discomfort, because the reality is where he has seven incisions on his body he's going to feel it. But is he feeling real pain, as though something is not as it should be, or discomfort due to what he's been through? That's the muddy ground we find ourselves on; I thinking he should be feeling better than he says he does, and he thinking I'm not understanding how he feels.
I just don't have the same affinity for pain killers that he does. He thinks nothing about taking a pill for pain, as long as it's prescription, but doesn't think about the after effects of doing so. My concern is the pain pills may mask real symptoms if there is a problem, or that he's taking these because he has them. I'll just get to the heart of the matter....too often I'm concerned that pain killers are used simply because he has them. If he truly needs them that's one thing, but I'm not sure that two weeks post surgery warrants still needing them.
Yesterday he told me that he had so much pain while trying to sleep Saturday night that he got up and took one around 2:30 a.m., and another around 4:00 a.m. That seems indicative of either a problem which should be addressed and is causing pain, or a problem that he's looking for a reason to take them. I don't doubt they will help him sleep, but if he can't sleep that may be another matter altogether. And I'm beginning to wonder if not sleeping is really at the heart of this issue.
I believe we both assumed once his body stopped over producing adrenaline and other hormones, he wouldn't feel "jazzed up" all the time, and sleeping would be easier. That hasn't been the case. He didn't get much sleep in the hospital, for obvious reasons. Being in ICU for five days meant he heard all the beeping, discussions, alarms, alerts, and activity going on around him. He wasn't getting sleep there unless he was medicated. But since he's come home he has indicated that he's not sleeping as well as I think he does. If he isn't getting recuperative sleep, I think he will naturally gravitate to a product that may help him sleep.
He goes back to the oncologist on Thursday, so we'll see what he thinks about how Terry's doing. Molly's been taking blood pressure and temperature daily so we can track if he starts to get an increase in temperature that might mean he's got an infection. So far it doesn't appear he does. He may just need someone other than me telling him how he's doing and how he should feel. Fortunately for him (although he might think himself unfortunate as a result) I do not ignore what's going on with him. He may not like what I say sometimes, but I'm truly looking out for his best interests. I don't think his best interests involve taking prescription pain killers long term, so I'm going to make sure they deal with whatever is going on to cause him such pain. And if it turns out it's not pain necessitating the pain relievers, then we'll deal with whatever it is that he's using the pills to alleviate. As with everything with him, we just need to know.
It's almost two weeks after surgery now, and Terry is still talking about pain. I've tried to have him determine whether it's pain or just discomfort, because the reality is where he has seven incisions on his body he's going to feel it. But is he feeling real pain, as though something is not as it should be, or discomfort due to what he's been through? That's the muddy ground we find ourselves on; I thinking he should be feeling better than he says he does, and he thinking I'm not understanding how he feels.
I just don't have the same affinity for pain killers that he does. He thinks nothing about taking a pill for pain, as long as it's prescription, but doesn't think about the after effects of doing so. My concern is the pain pills may mask real symptoms if there is a problem, or that he's taking these because he has them. I'll just get to the heart of the matter....too often I'm concerned that pain killers are used simply because he has them. If he truly needs them that's one thing, but I'm not sure that two weeks post surgery warrants still needing them.
Yesterday he told me that he had so much pain while trying to sleep Saturday night that he got up and took one around 2:30 a.m., and another around 4:00 a.m. That seems indicative of either a problem which should be addressed and is causing pain, or a problem that he's looking for a reason to take them. I don't doubt they will help him sleep, but if he can't sleep that may be another matter altogether. And I'm beginning to wonder if not sleeping is really at the heart of this issue.
I believe we both assumed once his body stopped over producing adrenaline and other hormones, he wouldn't feel "jazzed up" all the time, and sleeping would be easier. That hasn't been the case. He didn't get much sleep in the hospital, for obvious reasons. Being in ICU for five days meant he heard all the beeping, discussions, alarms, alerts, and activity going on around him. He wasn't getting sleep there unless he was medicated. But since he's come home he has indicated that he's not sleeping as well as I think he does. If he isn't getting recuperative sleep, I think he will naturally gravitate to a product that may help him sleep.
He goes back to the oncologist on Thursday, so we'll see what he thinks about how Terry's doing. Molly's been taking blood pressure and temperature daily so we can track if he starts to get an increase in temperature that might mean he's got an infection. So far it doesn't appear he does. He may just need someone other than me telling him how he's doing and how he should feel. Fortunately for him (although he might think himself unfortunate as a result) I do not ignore what's going on with him. He may not like what I say sometimes, but I'm truly looking out for his best interests. I don't think his best interests involve taking prescription pain killers long term, so I'm going to make sure they deal with whatever is going on to cause him such pain. And if it turns out it's not pain necessitating the pain relievers, then we'll deal with whatever it is that he's using the pills to alleviate. As with everything with him, we just need to know.
Thursday, June 17, 2010
The Six Million Dollar Man....(well, almost!)
Today was a follow up with the cardiologist. After all Terry had been through, it seemed like a good idea to have the cardiologist brought into the loop of events, as well as check him out to make sure his cardiac regimen is where they want it to be. He got some good news when he was told he could get rid a blood pressure med. Terry never had high blood pressure, but the damage after his heart attack was so substantial that BP meds have been used to reduce the workload in the past. Now that he doesn't have the heavy influx of hormones and adrenaline, taking those medications have really served to drag him down.
He had his implant (pacemaker/defibrillator) checked to make sure the settings were where they need to be, and that all looked fine. While he was there, a rep from the company that manufactured his device was there to do a check on it. He offered Terry access to a monitor that will be sent to the house, and will use wireless transmission to capture information and send it to the cardiologist regarding how the device is functioning and whether Terry is having any problems that it can be identified. The info is collected and transmitted every 24 hours, and he only has to be within 15 feet of the monitor. It's a form of medical telenet care that we will see more of in the future, I'm sure, but for now it will be a daily check on his heart and how often the device is having to work for him. Very cool technology....very cool.
The doctor he saw was not his regular cardiologist, but was a doctor we've evidently come full circle with in Terry's care. Six years ago when he had the staph infection in his heart, the doctor he saw today had come down to our local hospital from the hospital in Olathe. No one had realized how sick Terry really was until he'd been transferred from here to Olathe. The doctor that helped get the ball rolling on that major medical event was the doctor he saw today. He recognized Terry's name, and when we reminded him when Terry had last seen him, he was amazed at how well he thought Terry had been doing. When he heard the latest Terry had been through, he was in amazement. He said that in his experience as a physician he had never seen a patient with a pheochromocytoma before. He had heard of it, but had never been part of a care team.
It's always an enlightening experience talking to medical professionals about Terry's medical history. When they've heard the latest in particular, about the thyroid cancer and the pheo, you can tell they realize all he's been through. He takes that licking and keeps on ticking....
The oncologist called and said the initial pathology report showed the lymph tissue had not been invaded, but due to the size of the major mass on the thyroid Terry will definitely have the radiation treatment. He meets with that doctor next week and we will schedule treatment then. That gets us one step closer to ending this particular saga. Correcting hormone levels will be an ongoing issue for a while, but that is manageable in comparison to everything else he's been through. We are hopeful the days of the puke-a-thons are over. Time will tell.
He had his implant (pacemaker/defibrillator) checked to make sure the settings were where they need to be, and that all looked fine. While he was there, a rep from the company that manufactured his device was there to do a check on it. He offered Terry access to a monitor that will be sent to the house, and will use wireless transmission to capture information and send it to the cardiologist regarding how the device is functioning and whether Terry is having any problems that it can be identified. The info is collected and transmitted every 24 hours, and he only has to be within 15 feet of the monitor. It's a form of medical telenet care that we will see more of in the future, I'm sure, but for now it will be a daily check on his heart and how often the device is having to work for him. Very cool technology....very cool.
The doctor he saw was not his regular cardiologist, but was a doctor we've evidently come full circle with in Terry's care. Six years ago when he had the staph infection in his heart, the doctor he saw today had come down to our local hospital from the hospital in Olathe. No one had realized how sick Terry really was until he'd been transferred from here to Olathe. The doctor that helped get the ball rolling on that major medical event was the doctor he saw today. He recognized Terry's name, and when we reminded him when Terry had last seen him, he was amazed at how well he thought Terry had been doing. When he heard the latest Terry had been through, he was in amazement. He said that in his experience as a physician he had never seen a patient with a pheochromocytoma before. He had heard of it, but had never been part of a care team.
It's always an enlightening experience talking to medical professionals about Terry's medical history. When they've heard the latest in particular, about the thyroid cancer and the pheo, you can tell they realize all he's been through. He takes that licking and keeps on ticking....
The oncologist called and said the initial pathology report showed the lymph tissue had not been invaded, but due to the size of the major mass on the thyroid Terry will definitely have the radiation treatment. He meets with that doctor next week and we will schedule treatment then. That gets us one step closer to ending this particular saga. Correcting hormone levels will be an ongoing issue for a while, but that is manageable in comparison to everything else he's been through. We are hopeful the days of the puke-a-thons are over. Time will tell.
Tuesday, June 15, 2010
And the Beat Goes On..
While Terry made it through surgery, his recovery may be a little tougher than anticipated. Part of it is attributed to having two surgeries on the same day, but a more important consideration may be that his body has been under assault from excessive amounts of hormones for years now. His rest has not been as beneficial as someone with significant heart damage might need, and to compound that by having cancer in his thyroid, which is yet another gland influencing activity levels, and his own body was setting him up to fail. All things considered, I believe he has responded in a rather heroic manner.
I have tried to explain to the medical professionals who work with Terry that nothing he is ever diagnosed with comes with an easy diagnosis. His heart attack 10 years ago was undiagnosed until a faxed copy of his EKG was received by a cardiologist at another hospital. By the time they had determined he was full of infection from a major staph infection 6 years ago, I had taken him to the ER twice, and our primary care physician's office once in one week's time, and he'd had multiple labs and diagnostics trying to figure it out. They transported him to another hospital so they could see any problems in the back of his heart, and found patches of vegetation in his heart chambers, necessitating open heart surgery and 6 weeks of IV antibiotics.
Those experiences pale when compared to what he's been through over the past 5+ years. The vomiting and retching began the day after the 2004 presidential election. Initially when these events started, he'd vomit for 12, 15, 18 hours or more. He would hit patches of time when he wasn't vomiting regularly, but never felt well and certainly wasn't getting over whatever he had. He had referrals to specialists and scopes and blood and lab work, and got nowhere. But rather than having specialists who wanted to get to the root of his problems, he had doctors who got frustrated when they couldn't figure it out, and tried to put it back on him. There is no question that Terry did NOT want this happening over and over and over, but it was easier for specialists to indicate he had a hand in whatever was happening, and then they could be finished with it. There are no words to adequately describe my anger at these doctors who couldn't be bothered to do their jobs to our satisfaction and release Terry from the suffering he endured....for years.
So, more than 5 years after this all started, and after our entire family had been impacted by Terry's health, we started getting answers. Finally...but even thinking we had answers didn't adequately prepare us to find out just how long this has been going on. When his doctor came out of surgery, I learned that the slow growing thyroid cancer he had had been slow growing long enough that there was more than just the one mass on it we knew about. As a result, the lymph nodes came out, and he WILL have radiation. The adrenal gland mass, which we hope to find has been the culprit behind the vomiting, had been growing and overproducing for so long that it had actually adhered itself to his aorta, pancreas, and kidney. HOW does that happen? How can someone go to multiple doctors, have multiple hospitalizations, and no one knows what's going on with him?
Two days after his surgery his vitals were very unstable. His blood pressure was 57/43. His heart rate was 50 beats, and was so irregular that his pacemaker, which to our knowledge has never functioned in pacemaker mode, was working quite a bit due to the irregular beats. His respirations and blood oxygen levels were all low. Was it because he no longer had large amounts of adrenaline in his system? Was it because the physical strain on his already compromised body was all but too much? I don't know....but I know I spent hours in the ICU watching his monitor doing the most fascinating things. Fascinating, I suppose, when it's not indicative of potentially negative information where a loved one is concerned. But I knew he was in good hands, so I tried not to worry.
Terry's will to survive is extraordinary. He's been subjected to three life threatening situations in the last 10 years, and despite the odds, finds a way to battle back. Even with a damaged heart, he finds a way to keep going....he's like a Timex watch. He takes a licking, but his heart keeps ticking....and aren't we glad?
I have tried to explain to the medical professionals who work with Terry that nothing he is ever diagnosed with comes with an easy diagnosis. His heart attack 10 years ago was undiagnosed until a faxed copy of his EKG was received by a cardiologist at another hospital. By the time they had determined he was full of infection from a major staph infection 6 years ago, I had taken him to the ER twice, and our primary care physician's office once in one week's time, and he'd had multiple labs and diagnostics trying to figure it out. They transported him to another hospital so they could see any problems in the back of his heart, and found patches of vegetation in his heart chambers, necessitating open heart surgery and 6 weeks of IV antibiotics.
Those experiences pale when compared to what he's been through over the past 5+ years. The vomiting and retching began the day after the 2004 presidential election. Initially when these events started, he'd vomit for 12, 15, 18 hours or more. He would hit patches of time when he wasn't vomiting regularly, but never felt well and certainly wasn't getting over whatever he had. He had referrals to specialists and scopes and blood and lab work, and got nowhere. But rather than having specialists who wanted to get to the root of his problems, he had doctors who got frustrated when they couldn't figure it out, and tried to put it back on him. There is no question that Terry did NOT want this happening over and over and over, but it was easier for specialists to indicate he had a hand in whatever was happening, and then they could be finished with it. There are no words to adequately describe my anger at these doctors who couldn't be bothered to do their jobs to our satisfaction and release Terry from the suffering he endured....for years.
So, more than 5 years after this all started, and after our entire family had been impacted by Terry's health, we started getting answers. Finally...but even thinking we had answers didn't adequately prepare us to find out just how long this has been going on. When his doctor came out of surgery, I learned that the slow growing thyroid cancer he had had been slow growing long enough that there was more than just the one mass on it we knew about. As a result, the lymph nodes came out, and he WILL have radiation. The adrenal gland mass, which we hope to find has been the culprit behind the vomiting, had been growing and overproducing for so long that it had actually adhered itself to his aorta, pancreas, and kidney. HOW does that happen? How can someone go to multiple doctors, have multiple hospitalizations, and no one knows what's going on with him?
Two days after his surgery his vitals were very unstable. His blood pressure was 57/43. His heart rate was 50 beats, and was so irregular that his pacemaker, which to our knowledge has never functioned in pacemaker mode, was working quite a bit due to the irregular beats. His respirations and blood oxygen levels were all low. Was it because he no longer had large amounts of adrenaline in his system? Was it because the physical strain on his already compromised body was all but too much? I don't know....but I know I spent hours in the ICU watching his monitor doing the most fascinating things. Fascinating, I suppose, when it's not indicative of potentially negative information where a loved one is concerned. But I knew he was in good hands, so I tried not to worry.
Terry's will to survive is extraordinary. He's been subjected to three life threatening situations in the last 10 years, and despite the odds, finds a way to battle back. Even with a damaged heart, he finds a way to keep going....he's like a Timex watch. He takes a licking, but his heart keeps ticking....and aren't we glad?
Thursday, June 10, 2010
Quite the Ordeal
It's all over but the recovery...he went IN to surgery at about the time I was hoping he'd come OUT of surgery, but it's over now. What had originally been stated as a combined 5 hour procedure to remove both glands, actually took 8 hours. KU Med has a wonderful system in place for surgical nurses to be assigned to waiting areas. They come out, if not every hour, every other hour to provide updates and information. It was very comforting to know that even though it was taking longer than expected, we knew what was going on with him.
The oncologist came out around 11:00 last night to fill me in. He stated the thyroid had more nodules or masses on it than they originally thought. As a result, it took longer to get it removed than planned. He didn't give a number of nodes involved, but did say he had removed lymph tissue. The complete pathology report will confirm whether it was in the lymph nodes as indicated by the ultrasound by the time of Terry's follow up appointment in a couple of weeks.
For me, the disturbing part of the conversation had to do with the adrenal gland. Prior to taking him to the operating room, he had a lengthy consultation with the anesthesiologist. We think he was Russian, as he had a discernible accent, but seemed to be on top of Terry's situation. We had been told by the oncologist that he would begin with the adrenal gland and then do the thyroid. The anesthesiologist felt the risk of his blood pressure skyrocketing or bottoming out was very high if they did the adrenal gland first. He convinced the oncologist to reverse the order of the procedures to provide the least amount of stress to Terry's body. He did tell us, however, during his discussion that he had done many pheochromocytomas and many thyroid procedures. He had just never done them at the same time!! I felt at the time that Terry was in good hands, and now that it's over, I know he was. Their greatest concern materialized when the adrenal gland was touched, and his blood pressure skyrocketed. They were prepared, though, so he didn't have any negative ramifications as a result. Being prepared, and finally acknowledging the pheo made all the difference in his outcome.
The oncologist was very clear in what he told us. He said the mass in the adrenal gland had been there for years. YEARS. He actually went so far as to theorize that Terry might not have needed the pacemaker/defibrillator, and that his irregular beat might have been attributed to the over producing adrenal gland instead. He wasn't part of the picture when that was going on, so it's understandable that he doesn't fully grasp the magnitude of the damage of his heart attack. I don't believe the pheochromocytoma caused the need for the implant, but I do find it fascinating to learn all of the "jobs" the different parts of our body have in keeping us healthy and alive. I had to fight from getting teary when he told us how long the mass had been there. To know that other doctors had tried to make it Terry's problem when they couldn't diagnose it had angered me at the time, but to fully appreciate all the needless suffering he's been through because the specialists he saw couldn't diagnose it about broke my heart. We knew it wasn't a mental health issue. We knew he didn't "want" these vomiting attacks to happen.
I also talked with the oncologist about how Terry's body finds its way back to normal. If he's had massive levels of hormones produced and bombarding him every day for years, his system won't know what to do. I'm hopeful rather than being extremely tired all the time because the thyroid and one adrenal gland are gone that he will actually be able to get beneficial rest, so he won't FEEL tired all the time. His doctor agreed it may take a while to get him leveled out and working the way he should, but leveling out hormones will be part of the recovery process.
He was only able to say one word to me when I was finally able to see him last night, but he said it twice. That word was "wow" and it came out deeper and raspier than normal, but I'm sure he felt and meant every inflection of that word. He had a great little nurse who was working hard to make him as comfortable as possible, which I really appreciated. You always hope those who care for your loved one when you can't will treat them with the same care and concern that you do. It was very reassuring to me to hear her say that she knows what she would like done for her in the same situation, so she does what she can to provide comfort. Brushing his mouth out with oral swabs after his mouth was taped open for the ventilator and dried out was not a major extra effort. But the comfort it brought to him and his dried mouth was noticeable. And made me feel very grateful for not being able to do much to help him out at this moment in time.
But today is a better day than yesterday, and tomorrow will be better than today....I just need to keep reminding myself that even with the disability due to his heart, with these other issues corrected, he may actually be able to go places and do things he's not been able to for a while due to pain and vomiting. To be able to take a vacation with him again....to sit through movies, and concerts and school productions are simple things most people take for granted. If we simply have a better quality of life it will all be worth it. It has to....it's what we have left to achieve.
The oncologist came out around 11:00 last night to fill me in. He stated the thyroid had more nodules or masses on it than they originally thought. As a result, it took longer to get it removed than planned. He didn't give a number of nodes involved, but did say he had removed lymph tissue. The complete pathology report will confirm whether it was in the lymph nodes as indicated by the ultrasound by the time of Terry's follow up appointment in a couple of weeks.
For me, the disturbing part of the conversation had to do with the adrenal gland. Prior to taking him to the operating room, he had a lengthy consultation with the anesthesiologist. We think he was Russian, as he had a discernible accent, but seemed to be on top of Terry's situation. We had been told by the oncologist that he would begin with the adrenal gland and then do the thyroid. The anesthesiologist felt the risk of his blood pressure skyrocketing or bottoming out was very high if they did the adrenal gland first. He convinced the oncologist to reverse the order of the procedures to provide the least amount of stress to Terry's body. He did tell us, however, during his discussion that he had done many pheochromocytomas and many thyroid procedures. He had just never done them at the same time!! I felt at the time that Terry was in good hands, and now that it's over, I know he was. Their greatest concern materialized when the adrenal gland was touched, and his blood pressure skyrocketed. They were prepared, though, so he didn't have any negative ramifications as a result. Being prepared, and finally acknowledging the pheo made all the difference in his outcome.
The oncologist was very clear in what he told us. He said the mass in the adrenal gland had been there for years. YEARS. He actually went so far as to theorize that Terry might not have needed the pacemaker/defibrillator, and that his irregular beat might have been attributed to the over producing adrenal gland instead. He wasn't part of the picture when that was going on, so it's understandable that he doesn't fully grasp the magnitude of the damage of his heart attack. I don't believe the pheochromocytoma caused the need for the implant, but I do find it fascinating to learn all of the "jobs" the different parts of our body have in keeping us healthy and alive. I had to fight from getting teary when he told us how long the mass had been there. To know that other doctors had tried to make it Terry's problem when they couldn't diagnose it had angered me at the time, but to fully appreciate all the needless suffering he's been through because the specialists he saw couldn't diagnose it about broke my heart. We knew it wasn't a mental health issue. We knew he didn't "want" these vomiting attacks to happen.
I also talked with the oncologist about how Terry's body finds its way back to normal. If he's had massive levels of hormones produced and bombarding him every day for years, his system won't know what to do. I'm hopeful rather than being extremely tired all the time because the thyroid and one adrenal gland are gone that he will actually be able to get beneficial rest, so he won't FEEL tired all the time. His doctor agreed it may take a while to get him leveled out and working the way he should, but leveling out hormones will be part of the recovery process.
He was only able to say one word to me when I was finally able to see him last night, but he said it twice. That word was "wow" and it came out deeper and raspier than normal, but I'm sure he felt and meant every inflection of that word. He had a great little nurse who was working hard to make him as comfortable as possible, which I really appreciated. You always hope those who care for your loved one when you can't will treat them with the same care and concern that you do. It was very reassuring to me to hear her say that she knows what she would like done for her in the same situation, so she does what she can to provide comfort. Brushing his mouth out with oral swabs after his mouth was taped open for the ventilator and dried out was not a major extra effort. But the comfort it brought to him and his dried mouth was noticeable. And made me feel very grateful for not being able to do much to help him out at this moment in time.
But today is a better day than yesterday, and tomorrow will be better than today....I just need to keep reminding myself that even with the disability due to his heart, with these other issues corrected, he may actually be able to go places and do things he's not been able to for a while due to pain and vomiting. To be able to take a vacation with him again....to sit through movies, and concerts and school productions are simple things most people take for granted. If we simply have a better quality of life it will all be worth it. It has to....it's what we have left to achieve.
Wednesday, June 9, 2010
And We're Off!
Today is the day....we're impatiently waiting for them to come and get Terry and take him to surgery. He's had a rocky start to the whole process so far. When we arrived yesterday to check in, they had no record of him or his surgery. Not a good sign....fortunately I had paperwork with me from the oncologist's office that helped define what was supposed to happen. After a lunch at the cafeteria, we headed up to his room.
It was an interesting experience. Generally speaking, most people do not find themselves at the hospital for an admission 24 hours before their procedure. He wasn't feeling so bad that he needed to be in bed, so it was a little weird trying to figure out how he was supposed to do things. My needs included finding out exactly when the surgery was going to occur and which room they were going to move him to for closer observation. They couldn't answer either of those, which was very frustrating. The idea of trying to be here at 6 am to be sure I made it before he went in was not an appealing option, to say the least. He was able to call me last night to let me know which room he was in and that they thought he would go in for surgery at 11. It is now 11:30 and his nurse just came in to say they'll notify him 30-60 minutes before they come to get him, so he's evidently got a while to wait yet. The reasoning for moving him closer to the nurses' station was that they were dumping high levels of the alpha and beta blockers into his IV and need to monitor he didn't have any adverse reactions.
He was pretty nauseous this morning, which surprises us both, I think. We both thought when the alpha blockers starting working he would not be nauseous, or at least not as nauseous. Doesn't seem to be the case as he was sick, and very sick with vomiting for the past five days or so. We both knew that he tended to do worse when he was nervous or agitated, and were hopeful this would take care of that problem. I'm not sure now what's going to happen if decreasing adrenal production doesn't help with calming him down some. If nothing else, as a cardiac patient he should be as calm as possible. He may need to learn yoga if this doesn't help!
It's now almost 12:30 and they're on the way to get him. Hopefully it will be over soon.....
It was an interesting experience. Generally speaking, most people do not find themselves at the hospital for an admission 24 hours before their procedure. He wasn't feeling so bad that he needed to be in bed, so it was a little weird trying to figure out how he was supposed to do things. My needs included finding out exactly when the surgery was going to occur and which room they were going to move him to for closer observation. They couldn't answer either of those, which was very frustrating. The idea of trying to be here at 6 am to be sure I made it before he went in was not an appealing option, to say the least. He was able to call me last night to let me know which room he was in and that they thought he would go in for surgery at 11. It is now 11:30 and his nurse just came in to say they'll notify him 30-60 minutes before they come to get him, so he's evidently got a while to wait yet. The reasoning for moving him closer to the nurses' station was that they were dumping high levels of the alpha and beta blockers into his IV and need to monitor he didn't have any adverse reactions.
He was pretty nauseous this morning, which surprises us both, I think. We both thought when the alpha blockers starting working he would not be nauseous, or at least not as nauseous. Doesn't seem to be the case as he was sick, and very sick with vomiting for the past five days or so. We both knew that he tended to do worse when he was nervous or agitated, and were hopeful this would take care of that problem. I'm not sure now what's going to happen if decreasing adrenal production doesn't help with calming him down some. If nothing else, as a cardiac patient he should be as calm as possible. He may need to learn yoga if this doesn't help!
It's now almost 12:30 and they're on the way to get him. Hopefully it will be over soon.....
Friday, June 4, 2010
The Countdown Begins
After meeting with the oncologist yesterday, we have a game plan and date for surgery. He has to be admitted the day before in the morning, so will have to get him there by 10 am on Tuesday morning, the 8th of June, and they will do additional tests and ensure he's stabilized for about 24 hours before surgery.
He has been on an Alpha blocker for about a week now. The purpose of that is to diminish adrenal gland production. He will start a Beta blocker on Sunday in preparation for the surgery. The Beta blocker will help protect his heart from the reduced hormone production. He'll have the laproscopic surgery to remove the adrenal gland, and they'll enclose the gland in a "plastic" bag before they remove it. Once it's out, they'll reposition him on the operating table and begin the surgery to remove the thyroid.
Because the cancer has spread beyond the thyroid into the lymph tissue on both sides, they will be taking the additional tissue to ensure they have gotten all of it. I asked about post surgery and whether he'd have to have radiation or chemo since it has spread. It appears he'll get an easy road for radiation. He will be given a solution with radioactive iodine beads in it that will gravitate to any sites where thyroid cells have traveled. The cells will absorb the iodine from the beads and it will kill any cells, reducing the risk of additional metastasis.
Interestingly enough, since KU Med is a teaching hospital, they asked Terry about the potential to keep the adrenal gland and thyroid tissue for future research. We both thought it was a great idea, even though he was told they will remove any identifying information from the sample before it would be used. Terry thought if they could get back to him it might be helpful in figuring out in totality what's happening with him, as well as be a resource for others who may have the same condition.
He admitted this morning he's getting nervous about the surgery, Part of that is he was told there would be a ventilator in use when working on the thyroid. He remembers the feeling of having it in when he had the open heart surgery six years ago, and thinks the experience will be the same. I explained to him that when he had the other surgery he was in very bad shape. He was septic and so sick he was hallucinating by the time they took him in for surgery. This will be a different situation altogether. The primary difference is this time around he's fully lucid to understand what it all means. That means he has time to think about it and worry. I'm going to have to figure out a way to keep him positive and focused. I don't want him run down and anxious about what's going to happen because he can't sleep due to worry. Maybe as the adrenal gland continues to pump out less and less adrenaline it will curb some of the nervousness naturally.
My plan is to be there for the surgery and stay the first night after. I'll provide updates as they come in since I'll have my laptop with me. I have every confidence he will do fine and not have any problems, but I know we'll all be glad when it's over and in the past.
Here's to delicate cutting for an optimum outcome!
He has been on an Alpha blocker for about a week now. The purpose of that is to diminish adrenal gland production. He will start a Beta blocker on Sunday in preparation for the surgery. The Beta blocker will help protect his heart from the reduced hormone production. He'll have the laproscopic surgery to remove the adrenal gland, and they'll enclose the gland in a "plastic" bag before they remove it. Once it's out, they'll reposition him on the operating table and begin the surgery to remove the thyroid.
Because the cancer has spread beyond the thyroid into the lymph tissue on both sides, they will be taking the additional tissue to ensure they have gotten all of it. I asked about post surgery and whether he'd have to have radiation or chemo since it has spread. It appears he'll get an easy road for radiation. He will be given a solution with radioactive iodine beads in it that will gravitate to any sites where thyroid cells have traveled. The cells will absorb the iodine from the beads and it will kill any cells, reducing the risk of additional metastasis.
Interestingly enough, since KU Med is a teaching hospital, they asked Terry about the potential to keep the adrenal gland and thyroid tissue for future research. We both thought it was a great idea, even though he was told they will remove any identifying information from the sample before it would be used. Terry thought if they could get back to him it might be helpful in figuring out in totality what's happening with him, as well as be a resource for others who may have the same condition.
He admitted this morning he's getting nervous about the surgery, Part of that is he was told there would be a ventilator in use when working on the thyroid. He remembers the feeling of having it in when he had the open heart surgery six years ago, and thinks the experience will be the same. I explained to him that when he had the other surgery he was in very bad shape. He was septic and so sick he was hallucinating by the time they took him in for surgery. This will be a different situation altogether. The primary difference is this time around he's fully lucid to understand what it all means. That means he has time to think about it and worry. I'm going to have to figure out a way to keep him positive and focused. I don't want him run down and anxious about what's going to happen because he can't sleep due to worry. Maybe as the adrenal gland continues to pump out less and less adrenaline it will curb some of the nervousness naturally.
My plan is to be there for the surgery and stay the first night after. I'll provide updates as they come in since I'll have my laptop with me. I have every confidence he will do fine and not have any problems, but I know we'll all be glad when it's over and in the past.
Here's to delicate cutting for an optimum outcome!
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