There is a huge difference between having a sick child who is still a child and one who is an adult. One is not better or worse than the other, both can leave a parent feeling totally helpless. The difference is that if the child is a minor, you, as the parent, have some control. You can place a call to the doctor when you feel it is necessary, speak with the doctor directly, and make some decisions. As the parent of an adult child you have virtually no control of a situation. You can make suggestions and recommendations, you can urge, and you can plead but ultimately, your child is an adult and they are the one who has the control.
Pete has been experiencing more frequent and increasingly intense headaches. Yesterday late afternoon one was so bad that it made him nauseous. The rest of the day they would come and go but none so severe, it seemed, as that one.
This morning we drove up to Little Silver for his blood work. On the way there he asked if we could stop at McDonald's after the test as he had a craving for one of their breakfast sandwiches, so on the way home we did just that. His platelet count fell again, but only by a few points, so it seems to be bottoming out. We go to NYU on Wednesday and hopefully by then it will be on the rise.
Since we've been home he's continued to have headaches and they seem to be getting worse. I wanted him to call the doctor but he only says that he'll see them on Wednesday so there's no point in calling today or tomorrow. I feel so frustrated and helpless and seeing him in so much pain is heartrending.
I hate this disease. I hate it with so much passion that there is absolutely no doubt in my mind that I would not hesitate, not even for an instant, to decide what I would do to someone if they were causing harm to either of my children.
Monday, January 31, 2011
Friday, January 28, 2011
Friday's Blood Work - January 28, 2011
We were lucky with the amount of snow that fell in our area of NJ Wednesday night into Thursday. I think it was one of the lowest in the state. It was around 6"-8" here, but in many areas there were reports of 12", 18" and up to almost 2 ft. They're talking about 2 storms for next week, the first on Tuesday.
We got back a short time ago from the local oncologist's office after today's blood work. Most of the numbers seem pretty good, though he's had another drop in platelets. He faxed the results to NYU and is just waiting for a call to see what Dr. R has to say.
Unless we need to drive up to the city for some unanticipated treatment, Pete has an appointment this afternoon with Dr. W (local oncologist), just to go over all that's been going on and to keep him up-to-the-minute with how Pete's doing.
Yesterday Pete had an appointment at the Social Security office to go over his application for disability. His short term disability will be expiring soon as will his benefits so he'll need to go into work to speak with the HR rep and get information on COBRA. From what I understand SS medical benefits don't kick in until 2 years after SS disability begins.
We got back a short time ago from the local oncologist's office after today's blood work. Most of the numbers seem pretty good, though he's had another drop in platelets. He faxed the results to NYU and is just waiting for a call to see what Dr. R has to say.
Unless we need to drive up to the city for some unanticipated treatment, Pete has an appointment this afternoon with Dr. W (local oncologist), just to go over all that's been going on and to keep him up-to-the-minute with how Pete's doing.
Yesterday Pete had an appointment at the Social Security office to go over his application for disability. His short term disability will be expiring soon as will his benefits so he'll need to go into work to speak with the HR rep and get information on COBRA. From what I understand SS medical benefits don't kick in until 2 years after SS disability begins.
Wednesday, January 26, 2011
More Blood Work - January 26, 2011
Another winter storm was predicted for today, but how it began was unexpected. The weather reports were for rain changing to snow but instead the temps were a bit lower than anticipated and we got about 2 inches of the white stuff between 6 AM and 9 when we left for Little Silver. Roads were pretty slick and traffic was moving slowly, very slowly in some spots, but that was really a good thing. On the radio we heard reports of accidents all around us but we didn't encounter any, thank goodness.
Pete went in the back to have his blood drawn almost as soon as we arrived. We were waiting for the results when his local oncologist, Dr W, came out with them and sat down to chat. Usually there are a number of people there but today the office was really quite empty. He told us that just about all of his patients had called and cancelled because of the weather.
Pete's blood work results were as expected. Numbers are still not normal, but they're good considering the short time removed from radiation and chemo treatments. We'll return on Friday, when they're predicting another snow event. At least we're not driving into the city.
Pete went in the back to have his blood drawn almost as soon as we arrived. We were waiting for the results when his local oncologist, Dr W, came out with them and sat down to chat. Usually there are a number of people there but today the office was really quite empty. He told us that just about all of his patients had called and cancelled because of the weather.
Pete's blood work results were as expected. Numbers are still not normal, but they're good considering the short time removed from radiation and chemo treatments. We'll return on Friday, when they're predicting another snow event. At least we're not driving into the city.
Monday, January 24, 2011
Slowly Recovering - January 24, 2011
Pete is slowly moving toward normalcy. He spent most of Friday, Saturday and Sunday in bed as he was experiencing extreme fatigue, the result of recent radiation treatments and his latest chemo. On Saturday the only thing he "ate" was one bottle of Ensure, but by Sunday evening he was starting to get up and walk around a bit and even had some real food to eat.
Today he continues to improve, though it's a slow recovery. We drove up to the local oncologist for his blood work this morning and those numbers are improving. The results were faxed to Dr R. His cough is lessening; the congestion is breaking. He ate breakfast before we went for the blood work and right now he's in the kitchen putting together some lunch. He mentioned that the pain and discomfort he'd been experiencing has subsided a bit, and that's a very good thing. The skin on the back of his neck is a bit red and he said it feels like a sunburn, another side effect of the recent radiation treatments. I'm going to look for some pure aloe which I've read is a good remedy.
He'll be having more blood work done on Wednesday and again on Friday. Things are moving in the right direction.
Today he continues to improve, though it's a slow recovery. We drove up to the local oncologist for his blood work this morning and those numbers are improving. The results were faxed to Dr R. His cough is lessening; the congestion is breaking. He ate breakfast before we went for the blood work and right now he's in the kitchen putting together some lunch. He mentioned that the pain and discomfort he'd been experiencing has subsided a bit, and that's a very good thing. The skin on the back of his neck is a bit red and he said it feels like a sunburn, another side effect of the recent radiation treatments. I'm going to look for some pure aloe which I've read is a good remedy.
He'll be having more blood work done on Wednesday and again on Friday. Things are moving in the right direction.
Saturday, January 22, 2011
The Long Wait - January 22, 2011
Wednesday Pete scheduled his appointments to have the blood work done at the local oncologists. The first will be drawn on Monday, as per A's instructions. He faxed the Neulasta prescription over to Costco and Bruce and I picked it up when we went shopping. That shot is to be administered at least 24 hours post infusion, so A suggested it be given sometime Thursday, which I did.
Wednesday, Pete began coughing, one of those deep, chest-congested coughs. By Friday it had become more frequent but he didn't have a fever. He did say that his back was very painful and achy, so for both of those, I urged him to put a call in to A, just in case. She told him that since there was no fever associated with the cough it was most likely an upper respiratory infection and that the back may be the result of the Neulasta injection. He has a supply of antibiotics on hand at all times and began taking them on Thursday, so he's to continue with that regimen.
His energy level is in the pits, most likely the result of the combination of post-radiation and after-chemo effects and the pain meds he is still taking for his back. That pain had lessened considerably about mid-way through his back radiation treatments, but started to increase as he was finishing up radiation to the brain. The last PET/CT showed the tumor in his spine was very much reduced in size but it may just be where it's located and there is a tendency for the radiation to cause some swelling to occur in the area around the tumor and that, in turn, may be causing some irritation or pressure on the nerves.
Wednesday, Pete began coughing, one of those deep, chest-congested coughs. By Friday it had become more frequent but he didn't have a fever. He did say that his back was very painful and achy, so for both of those, I urged him to put a call in to A, just in case. She told him that since there was no fever associated with the cough it was most likely an upper respiratory infection and that the back may be the result of the Neulasta injection. He has a supply of antibiotics on hand at all times and began taking them on Thursday, so he's to continue with that regimen.
His energy level is in the pits, most likely the result of the combination of post-radiation and after-chemo effects and the pain meds he is still taking for his back. That pain had lessened considerably about mid-way through his back radiation treatments, but started to increase as he was finishing up radiation to the brain. The last PET/CT showed the tumor in his spine was very much reduced in size but it may just be where it's located and there is a tendency for the radiation to cause some swelling to occur in the area around the tumor and that, in turn, may be causing some irritation or pressure on the nerves.
Tuesday, January 18, 2011
Slight Change in Plan - January 18, 2011
Despite the snow that was falling when we went to bed and the bitterly cold temps overnight it really wasn't too terrible this morning. It warmed enough to change the snow to drizzle and though the roads were slick in spots, the ride into the city went smoothly. Fortunately people kept their wits about them and for the most part heeded the reduced speeds as posted.
We arrived at the Cancer Center pretty much on time and went up to the 6th floor. A3 got a blood return from the new port and started a slow fluid drip until the results came back and she got the "OK" from A to start the chemo.
A came in and discussed the side effects of today's chemo, Carboplatin. She went over today's blood test results, noting that Pete's platelet count was 130, somewhat lower that the normal 150. This low platelet count combined with recently finishing radiation and getting a double dose of the Carboblatin today suggested that it would be wise to hold off on the second dose that he was going to get tomorrow. She said that they didn't want to compromise his body's ability to produce platelets which would, in turn, result in delaying the next round of chemo. It would be more effective to just give the one big dose today and then do the two days three weeks from now.
She also said that any CT scans or MRIs will be done around that time because this chemo in combination with the radiation, even though those treatments have finished, are synergistic and the full effects would not be seen until that time. She gave Pete a script for the Neulasta and told him that he would not have to come back in for the bloodwork; he could have it done by the oncologist in Little Silver. That certainly will make things a lot easier and there will be a lot less driving, especially since the forecast is calling for more snow and nasty weather on the way.
So that's it. We had arrived in the city around 10 AM and left around 4 PM. Pete's feeling pretty good and we don't have to go back for several weeks.
We arrived at the Cancer Center pretty much on time and went up to the 6th floor. A3 got a blood return from the new port and started a slow fluid drip until the results came back and she got the "OK" from A to start the chemo.
A came in and discussed the side effects of today's chemo, Carboplatin. She went over today's blood test results, noting that Pete's platelet count was 130, somewhat lower that the normal 150. This low platelet count combined with recently finishing radiation and getting a double dose of the Carboblatin today suggested that it would be wise to hold off on the second dose that he was going to get tomorrow. She said that they didn't want to compromise his body's ability to produce platelets which would, in turn, result in delaying the next round of chemo. It would be more effective to just give the one big dose today and then do the two days three weeks from now.
She also said that any CT scans or MRIs will be done around that time because this chemo in combination with the radiation, even though those treatments have finished, are synergistic and the full effects would not be seen until that time. She gave Pete a script for the Neulasta and told him that he would not have to come back in for the bloodwork; he could have it done by the oncologist in Little Silver. That certainly will make things a lot easier and there will be a lot less driving, especially since the forecast is calling for more snow and nasty weather on the way.
So that's it. We had arrived in the city around 10 AM and left around 4 PM. Pete's feeling pretty good and we don't have to go back for several weeks.
Thursday, January 13, 2011
Take Me To the Edge - January 13, 2011
Today was the final radiation session. Just before we arrived at the Cancer Center, Pete placed a call to Dr R's office and asked L if she could have a prescription ready for more rescue oxycontin. When he got off the phone, I asked him about his pain and he admitted that he was having increased discomfort in his back and the scapular area around to his chest. He asked if I would go up to the doctor's office to pick up the script while he was in radiation. Of course I would.
Right after I got my parking voucher validated at the radiation desk I headed up to the 11th floor. A was there when I went in and she asked how Pete was, since he had requested more pain medication. I told her that he had said the pain was increasing so she told me to bring him back up to see the doctor when the radiation was finished.
While I was waiting for the elevator to go back down to radiation, located in the basement, Dr R and A came out and joined me. Before they exited on the 6th floor they told me that they had not yet gotten any word about the PET/CT that was done on Monday. They would check with the imaging department and should have it when we came back up.
I was back to the radiation waiting room before they had even called Pete in for treatment. When he was finished we headed back up to the doctor's office. Dr R seemed a bit frustrated when we arrived and had us wait in the lobby area because he still had not gotten anything about the scans, apologized to us and got in the elevator to go down and get them himself. It was not very long before he was back, obviously agitated, waving pieces of paper in the air and muttering that "they didn't follow my orders." The papers that he had were apparently the report of the scan and it was only Pete's upper body. Pete told him that they had done the lower scan because they had to turn him around and do 2 separate scans because he's too tall to fit in the machine for a full-body scan.
Dr R went back down in the elevator, promising that he'd get it straightened out. When he returned the next time he told us he was very angry at the people in imaging because they should have had the CDs and reports to him right after the scan was completed. He left us in the lobby once more while he went into his office to check for the scans on the server one last time.
Several minutes later he called us in to discuss the report and again apologized that we had to wait so long and that he should have had the CDs and reports much sooner. He started discussing setting up the new chemo sessions for Tuesday and Wednesday. While doing that, someone brought the CDs and reports in to A and she delivered them to Dr R. He immediately put them into his MAC, uploaded them to his computer and started viewing them together with us.
The images did not provide any real information about the brain mets, but that was expected. The brain is too active to allow differentiation between tumor activity and the rest of the brain. As he scrolled down Pete's body that lesion in the lung that had caused Pete so much pain in the past still looked quite large, but the report seemed to indicate a downturn in its activity, from 22 to 17. There were several suspicious spots that seem to indicate there new lesions; one that appears to be a recurrence of the original tumor in his upper left arm, one in the upper right arm, one on the right side of his back near the ribs, another here, there, and another...
When he pulled up the images of Pete's lower body onto the screen he found a few more spots that were not evident in earlier scans, but there was no sign of the large one in his left leg, above the knee. The one that had shown up in his right calf seemed hardly visible.
He said that he would have to do a careful evaluation of the scans later on, but for the moment, it seemed that the chemo had been effective in removing or reducing some of the mets, but that new ones are continuing to crop up. Chemo will begin again, a double dose of Carboplatin, possibly in combination with Cisplatin and then follow up with a quadruple dose. Both of these have the potential to be effective against all the mets, including the cancer cells circulating in the meninges, which still appears to be inflamed, and those in the brain.
He talked about the possibility of doing some kind of treatment that included stem cells and of doing the spinal tap that they had considered before they did the vincristine and methotrexate combination. He warned Pete that the treatments were very aggressive, but that we are dealing with a very difficult and aggressive form of sarcoma, one in which some of the cells seem to respond to chemo, while other cells continue to increase and form new mets.
He asked Pete if he was ready to go on because these treatments could push him to the edge where his platelets would drop very low and have a difficult time coming back up. Pete made it very clear that he is eager to continue his battle against this disease when, without any hesitation, he responded, "Take me to the edge. I'm ready to do this. I want to do this."
Pete has a four day break before the next round of chemo begins.
Right after I got my parking voucher validated at the radiation desk I headed up to the 11th floor. A was there when I went in and she asked how Pete was, since he had requested more pain medication. I told her that he had said the pain was increasing so she told me to bring him back up to see the doctor when the radiation was finished.
While I was waiting for the elevator to go back down to radiation, located in the basement, Dr R and A came out and joined me. Before they exited on the 6th floor they told me that they had not yet gotten any word about the PET/CT that was done on Monday. They would check with the imaging department and should have it when we came back up.
I was back to the radiation waiting room before they had even called Pete in for treatment. When he was finished we headed back up to the doctor's office. Dr R seemed a bit frustrated when we arrived and had us wait in the lobby area because he still had not gotten anything about the scans, apologized to us and got in the elevator to go down and get them himself. It was not very long before he was back, obviously agitated, waving pieces of paper in the air and muttering that "they didn't follow my orders." The papers that he had were apparently the report of the scan and it was only Pete's upper body. Pete told him that they had done the lower scan because they had to turn him around and do 2 separate scans because he's too tall to fit in the machine for a full-body scan.
Dr R went back down in the elevator, promising that he'd get it straightened out. When he returned the next time he told us he was very angry at the people in imaging because they should have had the CDs and reports to him right after the scan was completed. He left us in the lobby once more while he went into his office to check for the scans on the server one last time.
Several minutes later he called us in to discuss the report and again apologized that we had to wait so long and that he should have had the CDs and reports much sooner. He started discussing setting up the new chemo sessions for Tuesday and Wednesday. While doing that, someone brought the CDs and reports in to A and she delivered them to Dr R. He immediately put them into his MAC, uploaded them to his computer and started viewing them together with us.
The images did not provide any real information about the brain mets, but that was expected. The brain is too active to allow differentiation between tumor activity and the rest of the brain. As he scrolled down Pete's body that lesion in the lung that had caused Pete so much pain in the past still looked quite large, but the report seemed to indicate a downturn in its activity, from 22 to 17. There were several suspicious spots that seem to indicate there new lesions; one that appears to be a recurrence of the original tumor in his upper left arm, one in the upper right arm, one on the right side of his back near the ribs, another here, there, and another...
When he pulled up the images of Pete's lower body onto the screen he found a few more spots that were not evident in earlier scans, but there was no sign of the large one in his left leg, above the knee. The one that had shown up in his right calf seemed hardly visible.
He said that he would have to do a careful evaluation of the scans later on, but for the moment, it seemed that the chemo had been effective in removing or reducing some of the mets, but that new ones are continuing to crop up. Chemo will begin again, a double dose of Carboplatin, possibly in combination with Cisplatin and then follow up with a quadruple dose. Both of these have the potential to be effective against all the mets, including the cancer cells circulating in the meninges, which still appears to be inflamed, and those in the brain.
He talked about the possibility of doing some kind of treatment that included stem cells and of doing the spinal tap that they had considered before they did the vincristine and methotrexate combination. He warned Pete that the treatments were very aggressive, but that we are dealing with a very difficult and aggressive form of sarcoma, one in which some of the cells seem to respond to chemo, while other cells continue to increase and form new mets.
He asked Pete if he was ready to go on because these treatments could push him to the edge where his platelets would drop very low and have a difficult time coming back up. Pete made it very clear that he is eager to continue his battle against this disease when, without any hesitation, he responded, "Take me to the edge. I'm ready to do this. I want to do this."
Pete has a four day break before the next round of chemo begins.
Wednesday, January 12, 2011
Snow Day - January 12, 2011
We arrived at Tisch Medical Center pretty much on time for Pete's scheduled appointment of 10 AM to have his new port implanted but it was quite a while before the procedure actually began. The doctor who was assisting came out a couple of times while we were waiting and apologized for the delay, explaining that the operating rooms were being used for a couple of emergencies that had come in. When he was called in it was probably around 11:30.
It was close to 2 PM when a nurse came out and took me into the recovery area where Pete was wide awake and anxious to leave. Normally they keep patients for 2 hours post-op, but when Pete explained that he still had an appointment for radiation, the nurse called the doctor to see if she could get him cleared to leave in less time. She brought him a tray of food as he really hadn't eaten anything since breakfast Monday and told him that the doctor had said he could leave after a half hour, so it was a little past 2:30 when he signed the discharge papers. We drove over to the Cancer Center for his radiation treatment, finished that and headed for home, arriving around 4:30.
The snow started yesterday evening and deposited eight inches of the white stuff overnight. That means Bruce and I shovelled close to 1,000 cubic feet of snow to clear the driveway this morning. According to the weather/news reports areas to the north and into the city were hit harder, so Pete called and rescheduled his final radiation treatment for tomorrow at 1 PM.
It seems Pete may be having another outbreak of Thrush, this time possibly cause by radiation treatments to the head. The first outbreak occurred while Gina was here but it began to clear up a few days after he started taking the anti-fungal medicine prescribed by the doctor. He still has some pills so he started taking them this morning. We'll have to get that prescription refilled.
It was close to 2 PM when a nurse came out and took me into the recovery area where Pete was wide awake and anxious to leave. Normally they keep patients for 2 hours post-op, but when Pete explained that he still had an appointment for radiation, the nurse called the doctor to see if she could get him cleared to leave in less time. She brought him a tray of food as he really hadn't eaten anything since breakfast Monday and told him that the doctor had said he could leave after a half hour, so it was a little past 2:30 when he signed the discharge papers. We drove over to the Cancer Center for his radiation treatment, finished that and headed for home, arriving around 4:30.
The snow started yesterday evening and deposited eight inches of the white stuff overnight. That means Bruce and I shovelled close to 1,000 cubic feet of snow to clear the driveway this morning. According to the weather/news reports areas to the north and into the city were hit harder, so Pete called and rescheduled his final radiation treatment for tomorrow at 1 PM.
It seems Pete may be having another outbreak of Thrush, this time possibly cause by radiation treatments to the head. The first outbreak occurred while Gina was here but it began to clear up a few days after he started taking the anti-fungal medicine prescribed by the doctor. He still has some pills so he started taking them this morning. We'll have to get that prescription refilled.
Monday, January 10, 2011
Today - January 10, 2011
Radiation appointment was for 11 AM and Pete was out of there around half-past. The lobby was pretty busy as it usually is, so we just went up to the 2nd floor where they do the diagnostic imaging. He was scheduled to begin the prep before 2 but they didn't actually call him in until 2:30. Shortly after he went in, I went out for a walk and to grab something for lunch. I wanted to get something for him, too, because I figured he'd be hungry by the time he got out, but since I had no idea when that would be I decided I'd just get a couple of Dunkin' Donuts to tide him over until we got home.
It's a good thing I didn't get a sandwich because he didn't finish up until 5:30, and that would have been too long to have something sitting around that should have been refrigerated.
He wasn't in a very good mood when he came out. One of the first things he said was that he had still had not gotten any details about tomorrow's port operation. I took that to mean he hadn't heard anything at all, so when I started to say something about wondering when they would call, he snapped back that they told him to make sure he brought a lot of money. Not knowing exactly what that meant, I started to ask, but Pete was in no mood to explain other than he had gotten a call to tell him how much it was going to cost, so I changed the subject and started to tell him what kind of donuts I had picked up. He wasn't in the mood for listening, either, so I just stopped talking.
I can't even begin to imagine what's going on in his head, how he feels, what he's thinking. I do know what goes on inside mine, though. Is this just a case of "scanxiety", or did he see the screen while they were doing the scan and see something that upset him? He's been able to see some of the scans in the past, but he wouldn't tell me until after the doctor had given us the results, especially when he thought the report was not good. Is that the case now? Is that why he's in such a foul mood? Or is he just tired and annoyed that they hadn't given him any information about tomorrow's procedure?
We got in the car and before we had gone very far his phone rang. They were finally calling to give him the time, place and instructions. Tomorrow, 10 AM at Tisch Medical Center, where he had the first port removed a few weeks ago. Fasting from midnight. That's all I know because that's all I could get him to tell me.
I couldn't keep it in any longer, so I rehearsed in my mind what I was going to say. It went something like this:
Pete, I know you're annoyed and stressed and upset. This whole thing sucks. But I just want you to understand that I feel like you're taking your frustrations out on me, and I wish you wouldn't. I love you and I'm sorry you're upset. You know that I would do anything to make things better, but I can't.
His response was a barely audible, "I'm sorry. I love you, too." The rest of the ride home was in silence; Pete napped much of the time.
One of the most horrible feelings that haunts me is utter helplessness as I watch him go through all this. It's compounded when he thinks he's shielding or protecting me by not telling me things. What actually is, may be bad enough, but what my mind conjures up can be so much more frightening and emotionally damaging.
We got home a little before 7:30. He went immediately into bed and pulled the blanket over his head. Some of the side effects of both chemo and radiation are fatigue, depression, anger, general malaise, etc., and the effects are cumulative. He's had 17 radiation treatments so far and still has more to go. That means he's well into the midst of these negative side effects. I made a cup of tea for each of us and then I came in to sit at the computer and write this while I sipped my tea.
Tomorrow we go in for the port. Pete said that he'll have to call radiation to see if he can reschedule his treatment for after the procedure or maybe have to put it off until Wednesday. As far as I know, there's no appointment scheduled to go over the PET/CT scan results with the doctor. The weather prediction is for possible heavy snow Tuesday night into Wednesday. Maybe we'll be lucky and it will miss us.
It's a good thing I didn't get a sandwich because he didn't finish up until 5:30, and that would have been too long to have something sitting around that should have been refrigerated.
He wasn't in a very good mood when he came out. One of the first things he said was that he had still had not gotten any details about tomorrow's port operation. I took that to mean he hadn't heard anything at all, so when I started to say something about wondering when they would call, he snapped back that they told him to make sure he brought a lot of money. Not knowing exactly what that meant, I started to ask, but Pete was in no mood to explain other than he had gotten a call to tell him how much it was going to cost, so I changed the subject and started to tell him what kind of donuts I had picked up. He wasn't in the mood for listening, either, so I just stopped talking.
I can't even begin to imagine what's going on in his head, how he feels, what he's thinking. I do know what goes on inside mine, though. Is this just a case of "scanxiety", or did he see the screen while they were doing the scan and see something that upset him? He's been able to see some of the scans in the past, but he wouldn't tell me until after the doctor had given us the results, especially when he thought the report was not good. Is that the case now? Is that why he's in such a foul mood? Or is he just tired and annoyed that they hadn't given him any information about tomorrow's procedure?
We got in the car and before we had gone very far his phone rang. They were finally calling to give him the time, place and instructions. Tomorrow, 10 AM at Tisch Medical Center, where he had the first port removed a few weeks ago. Fasting from midnight. That's all I know because that's all I could get him to tell me.
I couldn't keep it in any longer, so I rehearsed in my mind what I was going to say. It went something like this:
Pete, I know you're annoyed and stressed and upset. This whole thing sucks. But I just want you to understand that I feel like you're taking your frustrations out on me, and I wish you wouldn't. I love you and I'm sorry you're upset. You know that I would do anything to make things better, but I can't.
His response was a barely audible, "I'm sorry. I love you, too." The rest of the ride home was in silence; Pete napped much of the time.
One of the most horrible feelings that haunts me is utter helplessness as I watch him go through all this. It's compounded when he thinks he's shielding or protecting me by not telling me things. What actually is, may be bad enough, but what my mind conjures up can be so much more frightening and emotionally damaging.
We got home a little before 7:30. He went immediately into bed and pulled the blanket over his head. Some of the side effects of both chemo and radiation are fatigue, depression, anger, general malaise, etc., and the effects are cumulative. He's had 17 radiation treatments so far and still has more to go. That means he's well into the midst of these negative side effects. I made a cup of tea for each of us and then I came in to sit at the computer and write this while I sipped my tea.
Tomorrow we go in for the port. Pete said that he'll have to call radiation to see if he can reschedule his treatment for after the procedure or maybe have to put it off until Wednesday. As far as I know, there's no appointment scheduled to go over the PET/CT scan results with the doctor. The weather prediction is for possible heavy snow Tuesday night into Wednesday. Maybe we'll be lucky and it will miss us.
Saturday, January 8, 2011
A Few Days Respite - January 8, 2011
Wednesday was just an easy ride in for the two radiation treatments and then back to the condo. Thursday was the final day for the radiation treatment to the spine and brain treatment #6 of 10. It was a quick ride back home after Pete finished with those and had blood drawn.
There was really no snow to speak of driving into the city on Friday and traffic moved along nicely going into and through the city. Brain radiation treatment #7 of 10 completed, we headed home for the weekend.
Pete did get a date and time for the next PET/CT scan and that will be Monday afternoon. The appointment time for radiation #8 is 11 AM, then pre-scan prep is scheduled for 1:45 and the scan at 2:15. Limited carb intake for 24 hours before, fasting after 8 AM.
The port implant is on the docket for Tuesday but we still don't have a time. When we asked whether it will be done at the Cancer Center or the Tisch Hospital we were told it'll be done at the hospital.
Snow showers are predicted for today into Sunday and a repeat is on the radar for Tuesday into Wednesday. Neither should be of much consequence and I'm hoping that the forecasters are on the money.
There was really no snow to speak of driving into the city on Friday and traffic moved along nicely going into and through the city. Brain radiation treatment #7 of 10 completed, we headed home for the weekend.
Pete did get a date and time for the next PET/CT scan and that will be Monday afternoon. The appointment time for radiation #8 is 11 AM, then pre-scan prep is scheduled for 1:45 and the scan at 2:15. Limited carb intake for 24 hours before, fasting after 8 AM.
The port implant is on the docket for Tuesday but we still don't have a time. When we asked whether it will be done at the Cancer Center or the Tisch Hospital we were told it'll be done at the hospital.
Snow showers are predicted for today into Sunday and a repeat is on the radar for Tuesday into Wednesday. Neither should be of much consequence and I'm hoping that the forecasters are on the money.
Tuesday, January 4, 2011
Update - January 4, 2011
Gina's flight back to California was early New Year's morning. Sunday was just a day to take down the tree and pack up the ornaments for another year.
Pete's appointment stands at 10 AM, so we packed the car for the last week at the condo and left around 8 Monday morning. His blood work results showed that his platelet count dropped lower but it should be turning around soon. We met with Dr R and A after the radiation treatments were finished. The port is scheduled to be implanted on Tuesday, January 11, but Dr R said that he'd really like to have it done sooner and that they'd continue to work on getting an earlier date. Pete mentioned a strange feeling in his throat, a bit of difficulty swallowing, when he was eating anything that was the slightest bit dry. It may be nothing so he'll just monitor it and hopefully it will subside. We drove to the condo, unloaded our bags, and then went downstairs and walked about a block to a small mall, picked up some lunch and then went back to the condo to eat it.
Today the drive into the city was the easiest I think we've ever had. There were no surprises when Pete went to the Concierge Desk; the only thing on the agenda was radiation, so when he finished there he called Dr R's secretary, L, to check to see if he should go for blood work. The answer for today was "no", and when Pete asked her if there were any scans or appointments scheduled, or if anything had been changed with regard to the port the answer to each was "not yet". He asked her to tell Dr R that he is beginning to have some pain in the left shoulder blade area extending around to his chest, similar to what he had been feeling some time ago, but more in the front this time and not yet severe. We'll most likely be seeing the doctor either tomorrow or Thursday and talk more about it then.
Since we finished up quite early, Pete and I decided to just drive back home. The condo is nice when we're spending long days in the city, but it's just not home. Besides, Bruce informed me last night that the cat's automatic feeder had broken. Why Marley has an automatic feeder is a long story, but I needed to get home to fix it, otherwise Bruce would have to remember to feed him 6 small meals at regular intervals throughout the day. So home we went. We'll drive back tomorrow morning for Pete's appointment and then stay at the condo for the last time Wednesday night. I just hope the light dusting of snow that was predicted for Friday and has now changed to Thursday night into Friday remains a light dusting.
Pete's appointment stands at 10 AM, so we packed the car for the last week at the condo and left around 8 Monday morning. His blood work results showed that his platelet count dropped lower but it should be turning around soon. We met with Dr R and A after the radiation treatments were finished. The port is scheduled to be implanted on Tuesday, January 11, but Dr R said that he'd really like to have it done sooner and that they'd continue to work on getting an earlier date. Pete mentioned a strange feeling in his throat, a bit of difficulty swallowing, when he was eating anything that was the slightest bit dry. It may be nothing so he'll just monitor it and hopefully it will subside. We drove to the condo, unloaded our bags, and then went downstairs and walked about a block to a small mall, picked up some lunch and then went back to the condo to eat it.
Today the drive into the city was the easiest I think we've ever had. There were no surprises when Pete went to the Concierge Desk; the only thing on the agenda was radiation, so when he finished there he called Dr R's secretary, L, to check to see if he should go for blood work. The answer for today was "no", and when Pete asked her if there were any scans or appointments scheduled, or if anything had been changed with regard to the port the answer to each was "not yet". He asked her to tell Dr R that he is beginning to have some pain in the left shoulder blade area extending around to his chest, similar to what he had been feeling some time ago, but more in the front this time and not yet severe. We'll most likely be seeing the doctor either tomorrow or Thursday and talk more about it then.
Since we finished up quite early, Pete and I decided to just drive back home. The condo is nice when we're spending long days in the city, but it's just not home. Besides, Bruce informed me last night that the cat's automatic feeder had broken. Why Marley has an automatic feeder is a long story, but I needed to get home to fix it, otherwise Bruce would have to remember to feed him 6 small meals at regular intervals throughout the day. So home we went. We'll drive back tomorrow morning for Pete's appointment and then stay at the condo for the last time Wednesday night. I just hope the light dusting of snow that was predicted for Friday and has now changed to Thursday night into Friday remains a light dusting.
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