Yesterday started with ups and downs, literally. The first stop is always the Concierge Desk in the lobby where you announce yourself and they hand you your itinerary for the day. Instead of going downstairs for radiation where we expected to begin, Pete was told to report to the 6th floor, the chemo ward. Once there, however, they told us we were to report to the 8th floor, where the doctors' offices are located, to see Dr R, so up we went. When Pete told the receptionist that we were there to see Dr R she seemed as confused as we were because Dr R's office is on the 11th floor. She told us to just sit there and wait and it wasn't too long before Dr R got off the elevator and asked us what we were doing there. When we told him we were sent there to wait for him, he told Pete to go down to the first floor to phlebotomy to have his blood drawn, so down we went. Pete no sooner walked into the lab when Dr R got off the elevator and asked us (Gina and I) where Pete was. I told him he was in the lab and he said to go down to radiation for his treatment after the blood draw and then up to 11 to meet with him.
It was A with whom we actually met and spoke with in the end. She said that his numbers should hit their nadir "tomorrow" (meaning today) and that she was ordering blood work. With that we headed back to the condo but got caught in a snarl of cars, trucks and buses just before the Lincoln Tunnel. It took about 20 minutes to travel 500 feet.
This morning, while we watched the morning news, sipping our coffee until it was time to leave for the city, Pete suddenly experienced a nose bleed. About 15 minutes later, he had a second nose bleed. Definitely something to mention once he got to the Cancer Center.
We left the condo prepared to head home for the holiday weekend as soon as Pete's treatments were finished. His appointment was for 10:15 and though we thought we had left with time to spare, the traffic going in was horrid and we didn't actually get there until about 10:30. Once again, the schedule Pete received at the Concierge Desk was a bit confusing. It had an appointment for chemo on the 6th floor scheduled to begin at 8:30 and radiation at 10. Up to the 6th floor we went and found the nurses there as confused as we were. So glad we weren't the only ones.
If Pete was going to get chemo he would need blood work and an IV line so the nurses quickly called for someone from the phlebotomy lab to come up to assist with accessing Pete's vein. Before he arrived, they got word from Dr R's office that all he needed was a finger prick for the CBC, so the phlebotomist pricked his finger with a needle similar to what you would find on a glucose meter. He squeezed Pete's finger and placed a very thin tube against the drop of blood. The tube fed into a tiny test tube-like container. He continued to almost "milk" the blood from Pete's finger until it filled the container. I'd guess that it wasn't much more than 1 ml total.
Once that was finished we went down to the basement for his radiation treatments. When those were finished he had a meeting with the radiation oncologist who explained that he is getting "whole brain" radiation with the exception of the area that had been previously radiated during the tomotherapy last January. We then went up to meet with Dr R on the 11th floor.
The nosebleeds were most likely the result of his low platelet count at this particular point in the chemo cycle. His counts are probably at their lowest right now and should begin to rebound in the next day or two. With the holidays and the blizzard playing havoc with scheduling, they are hoping that he will be getting his new portacath early next week, but the exact day has not yet been established. We all wished each other a Happy New Year and with that done, Pete, Gina and I were in the elevator and finally on our way back home.
May we all experience a New Year that brings happiness, health and peace.
Thursday, December 30, 2010
Wednesday, December 29, 2010
The Nose Knows - December 28-29, 2010
Yesterday was an early day. Pete had an 8:30 appointment for radiation treatment to his back. There was no blood work scheduled, so it was a very quick in-and-out trip.
At the beginning of these treatments, Pete had been advised that the path of the radiation beam may have some effect on his bowel/intestines/digestive system. Until yesterday it didn't seem that anything was particularly amiss, but as the three of us sat in the condo wishing for fresh air and lighting scented candles to mask frequent bursts of unpleasant odors, it became obvious that, in Pete's case, the radiation was wreaking havoc with his gastro-intestinal juices, producing voluminous eruptions of olfactoraly obnoxious flatulence, or as Pete described it, "radiation farts".
At the beginning of these treatments, Pete had been advised that the path of the radiation beam may have some effect on his bowel/intestines/digestive system. Until yesterday it didn't seem that anything was particularly amiss, but as the three of us sat in the condo wishing for fresh air and lighting scented candles to mask frequent bursts of unpleasant odors, it became obvious that, in Pete's case, the radiation was wreaking havoc with his gastro-intestinal juices, producing voluminous eruptions of olfactoraly obnoxious flatulence, or as Pete described it, "radiation farts".
Monday, December 27, 2010
Blizzard - December 27, 2010
It's Monday evening and the blizzard of 2010 is hopefully behind us.
It hadn't been snowing for very long when Gina, Pete and I left home around 1 PM yesterday afternoon. We did have to pull onto the shoulder a few times on the ride up to the condo to clean the ice build-up off of the windshield wipers. The roads were getting pretty slick by the time we actually arrived here around 3.
Pete's appointment was originally for 10 this morning, but watching the morning news, hearing that a state of emergency had been called for much of NJ and that the authorities were asking people to limit travel into the city, we decided to just wait to see how things would shape up. Just as Pete was about to call NYU to see if they were actually open, he received a call from the radiation department. They told him that they were open, but with a skeleton staff, and he could get his treatment if he got in before 3.
We left around 10:30. The roads were slick in spots but traffic was very light and I have to say that the other drivers we encountered were all driving sanely. We arrived at the cancer institute with no problems. After Pete had the radiation treatment to his back we headed one floor up for blood work, then up to Dr R's office.
Pete mentioned to Dr R that he had a strange kind of feeling in his throat. Without hesitation, Dr R wrote a prescription for an anti-fungal medicine, Diflucan, aka Fluconazol as thrush is a very possible and common side effect of Methotrexate. He also discussed having a new port put in either Wednesday or Thursday and told Pete to be certain to get in touch with L tomorrow to get the ball rolling on that. The blood work results came in while we were there and all the numbers continue to look good.
When we left, we headed right over to Costco in Clifton to have the prescription filled. With Pete's compromised immune system he has to be extremely diligent in administering any medications the doctor orders as quickly as possible. From Costco, we drove across the highway to a very empty Applebee's where we had a relaxing lunch, and were back at the condo around 3.
Tomorrow is an early morning; Pete's appointment is for 8:30 AM. Hopefully the roads will be well sanded because the overnight temps will pretty much ensure that anything that may have thawed today will be frozen solid by morning.
It hadn't been snowing for very long when Gina, Pete and I left home around 1 PM yesterday afternoon. We did have to pull onto the shoulder a few times on the ride up to the condo to clean the ice build-up off of the windshield wipers. The roads were getting pretty slick by the time we actually arrived here around 3.
Pete's appointment was originally for 10 this morning, but watching the morning news, hearing that a state of emergency had been called for much of NJ and that the authorities were asking people to limit travel into the city, we decided to just wait to see how things would shape up. Just as Pete was about to call NYU to see if they were actually open, he received a call from the radiation department. They told him that they were open, but with a skeleton staff, and he could get his treatment if he got in before 3.
We left around 10:30. The roads were slick in spots but traffic was very light and I have to say that the other drivers we encountered were all driving sanely. We arrived at the cancer institute with no problems. After Pete had the radiation treatment to his back we headed one floor up for blood work, then up to Dr R's office.
Pete mentioned to Dr R that he had a strange kind of feeling in his throat. Without hesitation, Dr R wrote a prescription for an anti-fungal medicine, Diflucan, aka Fluconazol as thrush is a very possible and common side effect of Methotrexate. He also discussed having a new port put in either Wednesday or Thursday and told Pete to be certain to get in touch with L tomorrow to get the ball rolling on that. The blood work results came in while we were there and all the numbers continue to look good.
When we left, we headed right over to Costco in Clifton to have the prescription filled. With Pete's compromised immune system he has to be extremely diligent in administering any medications the doctor orders as quickly as possible. From Costco, we drove across the highway to a very empty Applebee's where we had a relaxing lunch, and were back at the condo around 3.
Tomorrow is an early morning; Pete's appointment is for 8:30 AM. Hopefully the roads will be well sanded because the overnight temps will pretty much ensure that anything that may have thawed today will be frozen solid by morning.
Saturday, December 25, 2010
A Wonderful Christmas Present - December 25, 2010
Last night, Christmas Eve, I received one of the most wonderful presents a mother can get. I drifted off to sleep listening to Gina and Pete as they quietly laughed and chatted together in the other room.
Thursday, December 23, 2010
An Unexpected Gift - December 23, 2010
Yesterday, after I returned from my walk I had to make a decision. My daughter, Gina, had made reservations several months ago to fly in from her home in southern California, arriving on December 29 and leaving on January 1. With the economy as it is and flights being quite expensive, she had found this relatively low-cost fare and decided to book it. It was not going to be a long visit, but she would be spending all 3 days with us.
Things changed. Since making those travel arrangements we learned of the mets in his spine. With Pete's treatment schedule in place, 2 of those 3 days he would be receiving radiation. Then came the news of the lesions in his brain. Discussions of additional chemo and the possibility of expanding the radiation to certain of his brain mets threatened to whittle away the time brother and sister could actually relax and enjoy together. Gina decided to check for an earlier flight, and very fortunately, she was able to change her arrival date to last evening.
Her flight was scheduled to arrive around 7 PM which meant I would have to leave for Newark Liberty Airport around 6:30. I couldn't quite figure what excuse I could use to suddenly leave the condo to go for a ride to who knows where and with no idea how long it might take, so about quarter past 6, I broke the news to Pete that I was going to pick up Gina. He was a bit shocked and surprised, but by that time I had to leave to drive to the airport.
Gina went into the city with us this morning. The drive in was one of the easiest we've had. Pete had his radiation treatment and we headed upstairs for blood work. The first nurse tried 2 different veins and managed to fill one vial but that was it, so she called a second nurse, who was also unsuccessful at drawing the necessary blood. They decided it was time to call in an expert, so a young man from the labs made his appearance and expertly inserted the needle and extracted 4 additional vials of blood. Trust me when I say that the nurses are highly competent and certainly experienced, but Pete's veins have become extremely difficult to work with after being stuck so many times in the past 18 months.
A came in to touch base and began discussing the schedule for next week. It seems that Pete will not get the Methotrexate on Monday, but he would most likely receive one of the platinum-based chemos. It was at this point that I asked about a new port. A agreed that it would be a good idea to have the port implanted prior to the next round of Methotrexate because of the required injection of the "rescue" drug, Vincristine, prior to the Methotrexate. She asked about the radiation schedule and Pete informed her that Dr S4 had spoken to him after he finished his treatment and indicated that brain radiation would probably begin on Wednesday.
His results came in around noon as all being good. We called for the car and headed home; home as in our house along the Jersey shore, where Bruce and the 3 dogs have been waiting patiently for our return.
Having Gina home for the holidays was one of the best Christmas presents we could have asked for. The other one is that all these treatments will be successful in eliminating the tumors and cancer cells from Pete's body.
Merry Christmas, everyone!
Things changed. Since making those travel arrangements we learned of the mets in his spine. With Pete's treatment schedule in place, 2 of those 3 days he would be receiving radiation. Then came the news of the lesions in his brain. Discussions of additional chemo and the possibility of expanding the radiation to certain of his brain mets threatened to whittle away the time brother and sister could actually relax and enjoy together. Gina decided to check for an earlier flight, and very fortunately, she was able to change her arrival date to last evening.
Her flight was scheduled to arrive around 7 PM which meant I would have to leave for Newark Liberty Airport around 6:30. I couldn't quite figure what excuse I could use to suddenly leave the condo to go for a ride to who knows where and with no idea how long it might take, so about quarter past 6, I broke the news to Pete that I was going to pick up Gina. He was a bit shocked and surprised, but by that time I had to leave to drive to the airport.
Gina went into the city with us this morning. The drive in was one of the easiest we've had. Pete had his radiation treatment and we headed upstairs for blood work. The first nurse tried 2 different veins and managed to fill one vial but that was it, so she called a second nurse, who was also unsuccessful at drawing the necessary blood. They decided it was time to call in an expert, so a young man from the labs made his appearance and expertly inserted the needle and extracted 4 additional vials of blood. Trust me when I say that the nurses are highly competent and certainly experienced, but Pete's veins have become extremely difficult to work with after being stuck so many times in the past 18 months.
A came in to touch base and began discussing the schedule for next week. It seems that Pete will not get the Methotrexate on Monday, but he would most likely receive one of the platinum-based chemos. It was at this point that I asked about a new port. A agreed that it would be a good idea to have the port implanted prior to the next round of Methotrexate because of the required injection of the "rescue" drug, Vincristine, prior to the Methotrexate. She asked about the radiation schedule and Pete informed her that Dr S4 had spoken to him after he finished his treatment and indicated that brain radiation would probably begin on Wednesday.
His results came in around noon as all being good. We called for the car and headed home; home as in our house along the Jersey shore, where Bruce and the 3 dogs have been waiting patiently for our return.
Having Gina home for the holidays was one of the best Christmas presents we could have asked for. The other one is that all these treatments will be successful in eliminating the tumors and cancer cells from Pete's body.
Merry Christmas, everyone!
Wednesday, December 22, 2010
Back Pain Easing - December 22, 2010
Yesterday was rather uneventful. Easy ride into the city. Pete had his radiation treatment first, then upstairs for blood work and urinalysis. A stopped in to check on how he's doing; making certain he's been getting enough fluids and also getting rid of enough, both very important for his well-being, and keeping his ph level above 7. The only snag was that there was a backlog in the labs and it took an inordinately long time to get the results, all good, before we could leave.
As so often happens, there were a few snags on the ride back to the condo. We were directed to go straight where we would normally turn, so we had to do a few adjustments and zig-zags through the city in order to get back on course.
I left Pete to relax at the condo and I set out to pick up the balance of his prescription that had been partially filled the other day. In the daylight and without being under the stress of getting someplace before closing time I found the Costco in Clifton without any problem, picked up the rx and a few other items. After that I found a regular grocery store on the other side of the highway to get a few other items. Then came the ride back.
According to my smartphone GPS app, it was a 14 mile trip that should take about 20 minutes. 20 minutes later I was at the "11 miles from destination" point and remained there for another 30 minutes. Gotta love rush hour.
This morning, Pete had some good news. His back was causing him considerably less pain.On the flip side, his hands are becoming quite chapped and he said that the joints of his toes are achy. It may be the start of neuropathy, a side effect of the chemo. We planned to talk to Dr R, A or the nurse about it.
Another easy ride in and immediately down to radiation area. We thought he was going to have his treatment but instead they did the sim and made a mask in preparation for possible radiation treatment to his brain. They had sent a request to MMC where he had the tomotherapy last January but they had to resend it because it needed St Barnabas in the name. Minor technicality. Mask finished, we went upstairs for blood work and would return for treatment #6.
Dr R and A came in soon after the nurse drew the blood. Dr R didn't seem to think that the discomfort in his toes is necessarily neuropathy and if it continues or is worse tomorrow they may run some tests. Everything looks good, Pete's fluid input and output is excellent, and the blood work and urinalysis show all is going as planned. We were out of there and back to the basement for radiation treatment #6. Because they had rearranged his scheduled appointment we had to wait about 20 minutes for them to fit him back in, but once he was called in, the treatment was it's normal 15 minutes. Traffic moved smoothly and we were back at the condo a little before 1.
I plan on taking a walking tour of the area in a little while, check out the local strip mall that I understand is down the road a bit, leaving Pete to kick back and relax while I'm out.
As so often happens, there were a few snags on the ride back to the condo. We were directed to go straight where we would normally turn, so we had to do a few adjustments and zig-zags through the city in order to get back on course.
I left Pete to relax at the condo and I set out to pick up the balance of his prescription that had been partially filled the other day. In the daylight and without being under the stress of getting someplace before closing time I found the Costco in Clifton without any problem, picked up the rx and a few other items. After that I found a regular grocery store on the other side of the highway to get a few other items. Then came the ride back.
According to my smartphone GPS app, it was a 14 mile trip that should take about 20 minutes. 20 minutes later I was at the "11 miles from destination" point and remained there for another 30 minutes. Gotta love rush hour.
This morning, Pete had some good news. His back was causing him considerably less pain.On the flip side, his hands are becoming quite chapped and he said that the joints of his toes are achy. It may be the start of neuropathy, a side effect of the chemo. We planned to talk to Dr R, A or the nurse about it.
Another easy ride in and immediately down to radiation area. We thought he was going to have his treatment but instead they did the sim and made a mask in preparation for possible radiation treatment to his brain. They had sent a request to MMC where he had the tomotherapy last January but they had to resend it because it needed St Barnabas in the name. Minor technicality. Mask finished, we went upstairs for blood work and would return for treatment #6.
Dr R and A came in soon after the nurse drew the blood. Dr R didn't seem to think that the discomfort in his toes is necessarily neuropathy and if it continues or is worse tomorrow they may run some tests. Everything looks good, Pete's fluid input and output is excellent, and the blood work and urinalysis show all is going as planned. We were out of there and back to the basement for radiation treatment #6. Because they had rearranged his scheduled appointment we had to wait about 20 minutes for them to fit him back in, but once he was called in, the treatment was it's normal 15 minutes. Traffic moved smoothly and we were back at the condo a little before 1.
I plan on taking a walking tour of the area in a little while, check out the local strip mall that I understand is down the road a bit, leaving Pete to kick back and relax while I'm out.
Monday, December 20, 2010
Monday Morning - December 20, 2010
A friend of Pete's has a condo in West New York, about a 10 minute drive to the entrance to the Lincoln Tunnel and she offered to let us stay there during Pete's treatments. We drove up Sunday night with what we thought we might need, got the keys and settled in for the night.
It was a very easy commute into the city and across town to the NYU Cancer Institute this morning. Just blocks before we arrived Pete got a call on his cell from Dr R's office assistant that we were to call as soon as we arrived at the hospital, so minutes later Pete returned the call once we were in the lobby. We were early for his radiation appointment and Dr R wanted to see us immediately, so up to the 11th floor we went.
I had the CD of Pete's brain MRI that had been done on Friday but Dr R already had it on his computer. He started showing us what he saw, pointing out the swollen menenges that we had seen on the MRI of the spine, but also numerous lesions in different areas of the brain. Some were tiny, a couple he said may be remnants of the original brain tumor, but I can't say that I really know how many he actually pointed out. I was in a bit of a fog at that point.
Dr R said that he, too, was not expecting what the MRI showed. The spinal tap was out. If all he had to deal with were the menenges that would be the way to go, but with all the tumor activity in Pete's brain he was going to recommend a high dose IV infusion of Methotrexate. He mentioned as a follow-up, Platinum-based drugs, such as Carboplatin most likely in combination with Navelbine as these have been shown to be synergistic, enhancing the potency of each other. He would be consulting with Dr S3, the radiologist, regarding possible radiation treatment for the brain.
We left Dr R's office and went down to the radiation department in the basement for Pete's scheduled treatment #5 for the tumor in his lower spine. Dr S3 is requesting information on the radiation to Pete's brain that was done at the hospital local to us last January. The treatment only took about 15 min, then we went up to the 6th floor where Pete would be starting the new chemo regimen.
Before they could administer the Methotrexate they had to check his blood and urine. The blood work was fine, but the ph of his urine was less than 7. It seems 7 is the magic number with this chemo; they will not administer it unless it is over 7 so they gave him an IV of sodium bicarbonate to raise the ph. They started him on an IV of fluids and then prepared a "push" of Vincristine. The nurse checked and rechecked the IV because, though not as potent a vesicant as Adriamycin, it is still quite caustic. Following that they started a small bag with a mix of Pepcid, Benadryl, Kytril and Decadron. A came in and went over all the possible side effects of the treatment Pete was about to start. She left and a short time later Dr R and she returned and talked about the treatment and answered our questions. Dr R said he was not going to give up on Pete and that he would be looking into other treatments, conferring with the radiologist and the neurologist. The location of several of the lesions exclude the possibility of surgical removal. Both stopped in several more times during the course of the day to check on Pete and update us on the developing plan for treatment. He also adjusted Pete's pain medication and talked to him about possibly having the pain management doctor speak with him if he continues to experience the severe discomfort he's been having in his back. The combination of radiation and chemo should work together to reduce the tumor and relieve the pressure it placing on the nerves.
With the next urinalysis, his ph was above 7, so they started him on a 1500 ml bolus of Methotrexate over 4 hours. It was just 1 PM. About an hour into the drip, Pete got up to use the restroom. When he returned he realized that there were drips of yellow (the methotrexate is deep, bright yellow) on the pump under the IV pole. He saw one of the nurses as he entered the room and told her and suddenly there was a lot of commotion in the room. From nowhere, T, the director of the pharmacy appeared with several nurses carrying huge plastic bio hazard bags, heavy gloves, special disposable towels, wipes, goggles, and they turned off the pump and started cleaning and checking every connection along the tubing. Eventually he found the culprit, a connection had loosened ever so slightly. He explained that the huge bolus was not standard and had to be mixed and prepared in the pharmacy. The pump was restarted.
There are a number of follow-up directives for Pete when the infusion finishes. He has to make certain that he passes at least 3 liters of fluid, which means he has to take in at least 4 liters, each day for the next several days. He has to keep a record of each amount and test the ph. He also has to take sodium bicarbonate and if the ph is 7 or below he has to take additional bicarb. At 6 AM tomorrow morning, he will take another drug called Leucovorin, a "rescue" drug to the Methotrexate.
During Pete's treatment I went out and picked up a pack of ph test strips. Pete didn't expect that he would need the sodium bicarbonate, so he had left that at home, as well as a "magic mouthwash" (in case he started to get mouth sores from this chemo) and a few other items we had forgotten to pack. I texted Bruce and started making arrangements for him to bring them up to us at the condo this evening. The problem, though, was getting the prescription for the Leucovorin filled. Pete called our Costco pharmacy, hoping he could get it there and Bruce could bring it up, but they didn't have any in stock. Fortunately, Pete knows a number of Costco pharmacists, so he called the Costco in Clifton and they couldn't quite fill the complete prescription, but they had enough to get him started and Clifton is not too far from where we are staying in West New York.
Things were moving along until Pete asked when the pharmacy closed. The answer caused a bit of a concern because we would not be getting out until sometime after 6, there would be quite a bit of traffic at that time, and this Costco closes at 7. I had been texting Pete's father throughout the day to keep him apprised of all that was happening and somewhere along the line, he was going to be bringing the necessary items up instead of Bruce. After several attempts at putting a plan in place, Pete decided it would be best if I left him there, drove over to pick up the prescription, then to the condo, while his father drove into the city to pick him up and then bring him to the condo where I would be waiting.
Off I went, hand written directions in hand. Got a little lost, so I pulled into a parking lot and called up the navigation app on my phone. It thankfully guided me right to Costco, got the meds and headed back to the condo. Shortly after I got there, Pete arrived. We had dinner, homemade mac and cheese I had made up at home yesterday and left over chicken parm sandwiches from our lunch, and sat down to relax.
Tomorrow, it's back in for radiation treatment #6, blood work and, based on those results, possibly a 4 hour bolus of hydration.
It was a full and mind-boggling day. I may have missed stuff, but I think I covered most of the happenings.
It was a very easy commute into the city and across town to the NYU Cancer Institute this morning. Just blocks before we arrived Pete got a call on his cell from Dr R's office assistant that we were to call as soon as we arrived at the hospital, so minutes later Pete returned the call once we were in the lobby. We were early for his radiation appointment and Dr R wanted to see us immediately, so up to the 11th floor we went.
I had the CD of Pete's brain MRI that had been done on Friday but Dr R already had it on his computer. He started showing us what he saw, pointing out the swollen menenges that we had seen on the MRI of the spine, but also numerous lesions in different areas of the brain. Some were tiny, a couple he said may be remnants of the original brain tumor, but I can't say that I really know how many he actually pointed out. I was in a bit of a fog at that point.
Dr R said that he, too, was not expecting what the MRI showed. The spinal tap was out. If all he had to deal with were the menenges that would be the way to go, but with all the tumor activity in Pete's brain he was going to recommend a high dose IV infusion of Methotrexate. He mentioned as a follow-up, Platinum-based drugs, such as Carboplatin most likely in combination with Navelbine as these have been shown to be synergistic, enhancing the potency of each other. He would be consulting with Dr S3, the radiologist, regarding possible radiation treatment for the brain.
We left Dr R's office and went down to the radiation department in the basement for Pete's scheduled treatment #5 for the tumor in his lower spine. Dr S3 is requesting information on the radiation to Pete's brain that was done at the hospital local to us last January. The treatment only took about 15 min, then we went up to the 6th floor where Pete would be starting the new chemo regimen.
Before they could administer the Methotrexate they had to check his blood and urine. The blood work was fine, but the ph of his urine was less than 7. It seems 7 is the magic number with this chemo; they will not administer it unless it is over 7 so they gave him an IV of sodium bicarbonate to raise the ph. They started him on an IV of fluids and then prepared a "push" of Vincristine. The nurse checked and rechecked the IV because, though not as potent a vesicant as Adriamycin, it is still quite caustic. Following that they started a small bag with a mix of Pepcid, Benadryl, Kytril and Decadron. A came in and went over all the possible side effects of the treatment Pete was about to start. She left and a short time later Dr R and she returned and talked about the treatment and answered our questions. Dr R said he was not going to give up on Pete and that he would be looking into other treatments, conferring with the radiologist and the neurologist. The location of several of the lesions exclude the possibility of surgical removal. Both stopped in several more times during the course of the day to check on Pete and update us on the developing plan for treatment. He also adjusted Pete's pain medication and talked to him about possibly having the pain management doctor speak with him if he continues to experience the severe discomfort he's been having in his back. The combination of radiation and chemo should work together to reduce the tumor and relieve the pressure it placing on the nerves.
With the next urinalysis, his ph was above 7, so they started him on a 1500 ml bolus of Methotrexate over 4 hours. It was just 1 PM. About an hour into the drip, Pete got up to use the restroom. When he returned he realized that there were drips of yellow (the methotrexate is deep, bright yellow) on the pump under the IV pole. He saw one of the nurses as he entered the room and told her and suddenly there was a lot of commotion in the room. From nowhere, T, the director of the pharmacy appeared with several nurses carrying huge plastic bio hazard bags, heavy gloves, special disposable towels, wipes, goggles, and they turned off the pump and started cleaning and checking every connection along the tubing. Eventually he found the culprit, a connection had loosened ever so slightly. He explained that the huge bolus was not standard and had to be mixed and prepared in the pharmacy. The pump was restarted.
There are a number of follow-up directives for Pete when the infusion finishes. He has to make certain that he passes at least 3 liters of fluid, which means he has to take in at least 4 liters, each day for the next several days. He has to keep a record of each amount and test the ph. He also has to take sodium bicarbonate and if the ph is 7 or below he has to take additional bicarb. At 6 AM tomorrow morning, he will take another drug called Leucovorin, a "rescue" drug to the Methotrexate.
During Pete's treatment I went out and picked up a pack of ph test strips. Pete didn't expect that he would need the sodium bicarbonate, so he had left that at home, as well as a "magic mouthwash" (in case he started to get mouth sores from this chemo) and a few other items we had forgotten to pack. I texted Bruce and started making arrangements for him to bring them up to us at the condo this evening. The problem, though, was getting the prescription for the Leucovorin filled. Pete called our Costco pharmacy, hoping he could get it there and Bruce could bring it up, but they didn't have any in stock. Fortunately, Pete knows a number of Costco pharmacists, so he called the Costco in Clifton and they couldn't quite fill the complete prescription, but they had enough to get him started and Clifton is not too far from where we are staying in West New York.
Things were moving along until Pete asked when the pharmacy closed. The answer caused a bit of a concern because we would not be getting out until sometime after 6, there would be quite a bit of traffic at that time, and this Costco closes at 7. I had been texting Pete's father throughout the day to keep him apprised of all that was happening and somewhere along the line, he was going to be bringing the necessary items up instead of Bruce. After several attempts at putting a plan in place, Pete decided it would be best if I left him there, drove over to pick up the prescription, then to the condo, while his father drove into the city to pick him up and then bring him to the condo where I would be waiting.
Off I went, hand written directions in hand. Got a little lost, so I pulled into a parking lot and called up the navigation app on my phone. It thankfully guided me right to Costco, got the meds and headed back to the condo. Shortly after I got there, Pete arrived. We had dinner, homemade mac and cheese I had made up at home yesterday and left over chicken parm sandwiches from our lunch, and sat down to relax.
Tomorrow, it's back in for radiation treatment #6, blood work and, based on those results, possibly a 4 hour bolus of hydration.
It was a full and mind-boggling day. I may have missed stuff, but I think I covered most of the happenings.
Friday, December 17, 2010
Leptomeningeal Meningitis - December 17, 2010
When we were in to see Dr R the other day he showed us the thickening of the meninges seen extending from the base of the skull on down. He didn't give us a technical name for it but with some research and help from someone on the Sarcoma Alliance message boards I believe that the medical term for this is Leptomeningeal Meningitis. The treatment is called intraventricular chemotherapy and it may be administered by lumbar puncuture (spinal tap) or by use of an Ommaya reservoir with the tip in the ventircle. Using the spinal tap method a small amount of chemotherapy is injected directly into the CSF during the lumbar puncture. The Ommaya reservoir is implanted under the scalp and is used in much the same way as the portacath to administer the chemotherapy.
The chemotherapy agent most often mentioned in all the readings that I came across was methotrexate, and Dr R did mention this drug during our appointment with him.
Pete's father drove him into the city today for his radiation treatment and the brain MRI. Monday he will have radiation treatment #4 and the spinal tap to administer chemotherapy directly into the spinal column.
The chemotherapy agent most often mentioned in all the readings that I came across was methotrexate, and Dr R did mention this drug during our appointment with him.
Pete's father drove him into the city today for his radiation treatment and the brain MRI. Monday he will have radiation treatment #4 and the spinal tap to administer chemotherapy directly into the spinal column.
Thursday, December 16, 2010
Radiation Session #2 - December 16, 2010
It was an excruciatingly painful ride into the city and back for Pete this evening; he was in agony with every bump we went over and every time the car came to a stop, started to move or turned a corner. He has been taking the prescribed pain meds, but they just don't seem to help so he spoke to A earlier today and she agreed to have a prescription for some Toradol tablets waiting for him at the desk in the radiation suite.
It was the normal 2 hour trip in to have a 15 minute radiation treatment and then another 2 hour trip home. The roads were clear until we were about 10 minutes from home. When I called Bruce to tell him we were at the cancer center he said that it had begun snowing shortly after we had left home. It's been so cold the past few days that the ground is frozen and as a result the thin layer of snow resulted in some "black ice" on the roads, particularly on the GSP, so traffic was quite congested and moving very slowly.
Because of the time, traffic and this new prescription, we headed straight to Costco to pick it up before they closed. He'll be returning to the city for radiation treatment #3 and the brain MRI that are both scheduled around 2 PM. His father will be driving him in so I won't be going. I'm glad he'll be able to take this new pain medication, an anti-inflammatory drug, so that he'll hopefully experience a lot less discomfort during tomorrow's trip.
It was the normal 2 hour trip in to have a 15 minute radiation treatment and then another 2 hour trip home. The roads were clear until we were about 10 minutes from home. When I called Bruce to tell him we were at the cancer center he said that it had begun snowing shortly after we had left home. It's been so cold the past few days that the ground is frozen and as a result the thin layer of snow resulted in some "black ice" on the roads, particularly on the GSP, so traffic was quite congested and moving very slowly.
Because of the time, traffic and this new prescription, we headed straight to Costco to pick it up before they closed. He'll be returning to the city for radiation treatment #3 and the brain MRI that are both scheduled around 2 PM. His father will be driving him in so I won't be going. I'm glad he'll be able to take this new pain medication, an anti-inflammatory drug, so that he'll hopefully experience a lot less discomfort during tomorrow's trip.
Radiation, Chemo, and Another MRI - December 15, 2010
We went in this morning not really knowing how everything was going to play out. As it turned out, the first thing they did was to make a mold of Pete's legs and he had some "dots" tattooed on his back to help them direct the concentrated beam of radiation. We met with Dr S4 and he gave Pete a schedule for the rest of the treatments, 14 in all, weekdays, except Christmas Eve and New Year's Eve. Normally, they would not begin radiation for a couple of days, but they scheduled his first session for 5:15 this evening.
That taken care of we went up to the 11th floor to Dr R's office. He went over the MRI report of the spine and showed us on his computer where the lesion is, between L1 and L2. He said that it is just below the spinal chord, and that's a good thing. There was mention in the report of the possibility of another lesion located in the area of the brain stem, but this scan did not go up far enough to be able to see the complete area. Pete will have an MRI of his brain on Friday so we'll have to wait to learn more about that. Dr R also discussed starting chemo on Monday. He mentioned a number of different drugs that he is considering for Pete among which were Cisplatin and a couple of other Platinum based drugs, as well as Methotrexate and Pralatrexate (I think that was it), and a few more that I can't recall.
He also spoke about the possibility of doing a spinal tap and injecting drugs directly into the spinal column. I may be oversimplifying the explanation, but I think of it as the molecules of most cancer-fighting drugs being too large to pass through the blood-brain barrier and so are useless in combating cancers of the brain when administered through normal IV. Platinum-based drugs such as Cisplatin do have the ability to cross the barrier.
After we left Dr R, Pete and I left the city and drove through the Lincoln Tunnel to meet up with a friend of Pete's. She has a condo in West New York and offered to let us stay there during his radiation treatments. We had spoken to the social worker at NYU about staying at Hope Lodge, but they don't have a room available for the entire period. The condo will be perfect; it's only about 10 minutes to the Lincoln and then a straight drive up 34th street across town to NYUCI.
We got back to the cancer center and walked to a pizza shop less than 2 blocks away from the hospital to grab something to eat. We finished there and walked back in plenty of time for Pete's first radiation treatment. They called him in around 5:30. It lasted about a half hour but he was told that subsequent treatments will most likely be about half that.
Since we had no idea when Pete would actually be finished we couldn't call ahead for the valet service to bring the car around so it was close to 6:30 when we got into the car. The traffic was pretty heavy on the ride home so it was close to 9 by the time we got in.
I started this last night (Wednesday), but my brain was pretty fried so I decided to finish it today. His treatment is scheduled for 5 PM this evening (Thursday).
That taken care of we went up to the 11th floor to Dr R's office. He went over the MRI report of the spine and showed us on his computer where the lesion is, between L1 and L2. He said that it is just below the spinal chord, and that's a good thing. There was mention in the report of the possibility of another lesion located in the area of the brain stem, but this scan did not go up far enough to be able to see the complete area. Pete will have an MRI of his brain on Friday so we'll have to wait to learn more about that. Dr R also discussed starting chemo on Monday. He mentioned a number of different drugs that he is considering for Pete among which were Cisplatin and a couple of other Platinum based drugs, as well as Methotrexate and Pralatrexate (I think that was it), and a few more that I can't recall.
He also spoke about the possibility of doing a spinal tap and injecting drugs directly into the spinal column. I may be oversimplifying the explanation, but I think of it as the molecules of most cancer-fighting drugs being too large to pass through the blood-brain barrier and so are useless in combating cancers of the brain when administered through normal IV. Platinum-based drugs such as Cisplatin do have the ability to cross the barrier.
After we left Dr R, Pete and I left the city and drove through the Lincoln Tunnel to meet up with a friend of Pete's. She has a condo in West New York and offered to let us stay there during his radiation treatments. We had spoken to the social worker at NYU about staying at Hope Lodge, but they don't have a room available for the entire period. The condo will be perfect; it's only about 10 minutes to the Lincoln and then a straight drive up 34th street across town to NYUCI.
We got back to the cancer center and walked to a pizza shop less than 2 blocks away from the hospital to grab something to eat. We finished there and walked back in plenty of time for Pete's first radiation treatment. They called him in around 5:30. It lasted about a half hour but he was told that subsequent treatments will most likely be about half that.
Since we had no idea when Pete would actually be finished we couldn't call ahead for the valet service to bring the car around so it was close to 6:30 when we got into the car. The traffic was pretty heavy on the ride home so it was close to 9 by the time we got in.
I started this last night (Wednesday), but my brain was pretty fried so I decided to finish it today. His treatment is scheduled for 5 PM this evening (Thursday).
Tuesday, December 14, 2010
Kindness - December 14, 2010
MRI Results - December 14, 2010
Pete called me this morning after a doctor had spoken with him and shared the results of last night's MRI. It seems that there is yet another tumor, a 2 cm lesion located within the spinal column at L1. I drove up shortly after I got his call because they would be discharging him from the hospital sometime today.
He has an appointment at 11 AM tomorrow jointly with Dr R and the radiology oncologist to outline the treatment plan. All we know at this point is that it will be high-dose, directed radiation treatments over the course of 10-15 days.
He has an appointment at 11 AM tomorrow jointly with Dr R and the radiology oncologist to outline the treatment plan. All we know at this point is that it will be high-dose, directed radiation treatments over the course of 10-15 days.
Text From Pete - December 14, 2010
This is the text I received from Pete this morning:
Good morning! Well, last night was my mri (the most excruciatingly painful diagnostic test I have ever had). Afterward, I was in more pain than pre-test, so they gave me oxycodone (which did nothing), next came morphine (still nada) and after that, the nurse finally convinced them to let me get a dose of toradol (phew, finally able to get a bit of relief, pain down from 8-9 to a solid 7. This morning, when I was due I asked for one more round, and the same nurse told me they only ok'd me for a single dose, no follow-up doses. So... they gave me a dbl dose o morphine (nothing) and after breakfast, a dbl dose o oxycodone. Nurse said that's all she could do for now, but hoped the drs would get the mri report, change their minds, and get me some anti-inflammatories finally.
I'm planning on heading up today, late morning. Visiting hours begin at noon. Funny, but I'm really hoping that the scan results will show that pain is "just" the result of his herniated discs flaring up. Crazy to think that would be "good" news. He just texted me back and told me that I shouldn't drive up. We'll see.
Good morning! Well, last night was my mri (the most excruciatingly painful diagnostic test I have ever had). Afterward, I was in more pain than pre-test, so they gave me oxycodone (which did nothing), next came morphine (still nada) and after that, the nurse finally convinced them to let me get a dose of toradol (phew, finally able to get a bit of relief, pain down from 8-9 to a solid 7. This morning, when I was due I asked for one more round, and the same nurse told me they only ok'd me for a single dose, no follow-up doses. So... they gave me a dbl dose o morphine (nothing) and after breakfast, a dbl dose o oxycodone. Nurse said that's all she could do for now, but hoped the drs would get the mri report, change their minds, and get me some anti-inflammatories finally.
I'm planning on heading up today, late morning. Visiting hours begin at noon. Funny, but I'm really hoping that the scan results will show that pain is "just" the result of his herniated discs flaring up. Crazy to think that would be "good" news. He just texted me back and told me that I shouldn't drive up. We'll see.
Monday, December 13, 2010
Portacath Removed - December 13, 2010
I was just about ready to leave on Saturday when Pete texted me that his father was coming up to visit him. I asked if I could send his clothes and other requested items up and possibly delay my visit until late so he checked with his father and a short time later he, his wife and their 2 children (older teens) pulled into my driveway to pick up Pete's things.
I decided to just wait for a while and possibly go up later in the evening, but it turned out that they didn't leave until after dinner time. Pete had company all day so I just decided I'd wait until tomorrow (Monday) to visit and perhaps things would have been resolved and I'd be able to bring him home.
Wrong. He's still receiving IV antibiotics and some heavy duty pain meds.
Late Sunday evening I got a text from Pete that the pain in his back had worsened considerably, so much so that he couldn't get out of bed to use the bathroom. He was offered some pain meds (Percocet, Oxycondone) but having had this type of pain in the past he knew that they were of little help. He requested toradol because it was one of the few pain relievers that had helped him in the past. A short time later the nurse hooked up an IV bolus of toradol and he had a second dose this morning. It did alleviate much of the pain, enough so that he was able to get out of bed and move around a bit.
When I heard from him this morning he said that the back pain was a bit more tolerable and that he had been visited by several doctors, including pain management and infectious disease specialists. No one had been able to get a blood return from his port since he had arrived and they were unable to identify the source of the infection. His fever had spiked again several times this morning and he was told that under the circumstances it would be several days before he could be discharged.
Before driving up today I had spoken on the phone with him and discussed the very distinct possibility that the back pain might not be from his herniated discs, but rather the result of pressure from a yet unidentified new met to that area. He agreed to pursue this with the doctors and see if they could schedule a scan to identify the actual source of the pain.
I arrived around 1 PM. A short time later Dr R and A arrived to check on Pete. Dr R was adamant that the port was to be removed today since it was, in his opinion, the source of the infection. He also agreed that Pete should have a scan of the lower back as soon as possible. After talking with us for a while, they left, but about 15 minutes later they returned along with one of the resident doctors. Dr R explained to her exactly what he expected to be done and that it was to be done as soon as possible; remove the port and do a scan of the lower back.
I have to say that both Pete and I felt that Dr R was right on top of things and really looking out for Pete's best interests. Dr R said several times in the course of our conversations that he wanted Pete to be out of the hospital and home, something that Pete and I both also want, probably even more. My visit was under 2 hours, so I was home before the rush hour traffic really set in.
Pete called this evening. He had been taken down for the CT scan at 5 but they had trouble accessing his veins (contrast CT) and his IV antibiotics had begun to leak. Before they were able to completely address these problems, he was called in for the surgical removal of his port. They rescheduled the CT scan for after the port removal.
He called me to tell me that the removal of the port had been completed and he was back to waiting for the scan. I'm keeping my fingers crossed that the CT scan shows only herniated discs and not another tumor.
Whatever the outcome, I'll be heading up there again tomorrow, hopefully to bring Pete home.
I decided to just wait for a while and possibly go up later in the evening, but it turned out that they didn't leave until after dinner time. Pete had company all day so I just decided I'd wait until tomorrow (Monday) to visit and perhaps things would have been resolved and I'd be able to bring him home.
Wrong. He's still receiving IV antibiotics and some heavy duty pain meds.
Late Sunday evening I got a text from Pete that the pain in his back had worsened considerably, so much so that he couldn't get out of bed to use the bathroom. He was offered some pain meds (Percocet, Oxycondone) but having had this type of pain in the past he knew that they were of little help. He requested toradol because it was one of the few pain relievers that had helped him in the past. A short time later the nurse hooked up an IV bolus of toradol and he had a second dose this morning. It did alleviate much of the pain, enough so that he was able to get out of bed and move around a bit.
When I heard from him this morning he said that the back pain was a bit more tolerable and that he had been visited by several doctors, including pain management and infectious disease specialists. No one had been able to get a blood return from his port since he had arrived and they were unable to identify the source of the infection. His fever had spiked again several times this morning and he was told that under the circumstances it would be several days before he could be discharged.
Before driving up today I had spoken on the phone with him and discussed the very distinct possibility that the back pain might not be from his herniated discs, but rather the result of pressure from a yet unidentified new met to that area. He agreed to pursue this with the doctors and see if they could schedule a scan to identify the actual source of the pain.
I arrived around 1 PM. A short time later Dr R and A arrived to check on Pete. Dr R was adamant that the port was to be removed today since it was, in his opinion, the source of the infection. He also agreed that Pete should have a scan of the lower back as soon as possible. After talking with us for a while, they left, but about 15 minutes later they returned along with one of the resident doctors. Dr R explained to her exactly what he expected to be done and that it was to be done as soon as possible; remove the port and do a scan of the lower back.
I have to say that both Pete and I felt that Dr R was right on top of things and really looking out for Pete's best interests. Dr R said several times in the course of our conversations that he wanted Pete to be out of the hospital and home, something that Pete and I both also want, probably even more. My visit was under 2 hours, so I was home before the rush hour traffic really set in.
Pete called this evening. He had been taken down for the CT scan at 5 but they had trouble accessing his veins (contrast CT) and his IV antibiotics had begun to leak. Before they were able to completely address these problems, he was called in for the surgical removal of his port. They rescheduled the CT scan for after the port removal.
He called me to tell me that the removal of the port had been completed and he was back to waiting for the scan. I'm keeping my fingers crossed that the CT scan shows only herniated discs and not another tumor.
Whatever the outcome, I'll be heading up there again tomorrow, hopefully to bring Pete home.
Saturday, December 11, 2010
The Ferris Wheel - December 11, 2010
This journey with sarcoma is like being on a double ferris wheel. There are big ups and downs and at the same time there are a myriad of little ups and downs that you have to deal with day in and day out.
Yesterday we left the house around 6:30 AM. The drive in was the usual 2 hour trip. The day began with hydration and then IV antibiotics. Pete's temp was normal. Dr R and A came in and even though his numbers were pretty good Dr R decided to go ahead with the blood transfusion due to the fact that his temp had been fluctuating.
Because of the move to NYU, Pete's medical records and scans from Beth Israel need to be brought over, so I contacted L and then went up to sign release forms, which she immediately faxed over to Beth Israel. It was going to be a whole day affair and the doctor wanted everything ASAP, so I walked over to Beth Israel (about 2 mi) to pick them up, giving them time to get it all together. Neither were quite ready when I arrived so I just sat and waited. I did have to get L to light a fire under the people in medical records, otherwise I may be there still waiting.
It was just around noon as I got close to NYU so I picked up lunch for Pete and I. He was getting his first unit of blood when I returned. Each unit takes about 2 hours and they have to periodically check his vitals during the process. His temp fluctuated wildly every time they took it. One reading would be 98.3, the next would be 100.5, then back down to 97.9. then up to 100.9. When it was down, the nurse would say that we'd probably be able to go home if it stayed down. When it was up, she'd tell us that Pete would most likely have to go to the hospital and be admitted.
The second unit finished up around 4, but he still had the second dose of one of the antibiotics and finish up the hydration. His temp kept fluctuating, so we had no clear idea of what the final outcome would be. Finally sometime after 6, all the IVs were done and his last temp showed no fever. Just to make certain, A3 checked with Dr R and the verdict was to send us home but at the first sign of fever we were to report to the NYU emergency room at Tisch Hospital.
We were just about 3/4 of the way home when Pete got the call from A that the preliminary results of the blood culture showed a bacterial infection. She would call Dr R to see what his recommendation was, but she was pretty certain he would want Pete in the hospital. About 15 minutes later she called with the verdict: head to the ER.
Pete's wallet with all of his insurance cards was home and by now we were only minutes away so we continued home, did what we had to do, got in the car and headed back to the city. We found Tisch Hospital without any problem; by now it was somewhere between 9:30-10 PM. Pete said I could just drop him off and go home but I figured I'd feel better if I tagged along for a bit to see him get somewhat settled in. I stayed until 11 and then left for the 2 hour ride home.
It's now Saturday morning. I heard from Pete and he was moved from the ER bed to a room in the Oncology/Hematology wing around 4 AM. I'll be leaving here around noon to go up armed with the changes of clothes and other things that he asked me to bring to him. He'll be there until at least Monday and hopefully, by that time, they'll have a clearer picture of what's going on and have the fever/infection under control.
A did indicate, and we had already suspected, that the infection may have something to do with his portacath; whether it's the port itself, or an infection that was introduced when the needle came out. His resistance is so low that any minor break in the skin can have catastrophic results. Both times the needle came out, he said that he could tell because he felt it sticking him. Any little nick in the skin could have been just enough to allow one bacterium to enter his system and with few white blood cells to fight back, the infection grows like wildfire.
It hasn't been determined yet whether they'll have to remove the port, but that is one of the things that they'll be considering. All we do know is that he needs several more days of IV antibiotics and continuous hydration to fight the infection and the only place he can get those are in the hospital.
Thursday, December 9, 2010
Nine to Nine - December 9, 2010
We pulled out of the driveway a little before 9 AM this morning and arrived at NYUCC a little before 11. One of the first things they did was to take Pete's temp. He had taken Advil around 4 AM, so when he awakened he was cool, but on the ride up he knew the fever was returning because his head ached and he started having bad chills. One of the first things they did when we went in was to take his temp; it was 102.3, into the danger zone for cancer patients.
They disconnected the chemo infusion pump; he had only hours left on it to complete the regimen. They started IV fluids because he was dehydrated and then IV antibiotics, Vancomycin and Cefepime, and of course another bolus of Mesna. The normal blood work was drawn, but they also drew some from the port and from his arm for cultures. Today's nurse, T, explained that they draw from 2 places to compare the cultures and determine whether there is an infection at or near one of the sites, in this case they are concerned about the port. Because of the problems he had with the needle coming out they need to check this out. If the port has become infected it will have to be removed and a new port implanted.
Dr R said that if the fever was not gone by 6 PM, Pete would have to be taken to the hospital and admitted for at least over night, as the cancer center closes at 8 PM and has no overnight facilities. The prospect of hospitalization was not something any of us, including Dr R, was looking forward to. Fortunately, Pete did rally and even ate a half of a sandwich around 3 or so. By the time all the IVs finished it was just a little before 7. We pulled into the driveway shortly before 9.
We have to go back in tomorrow for more IV antibiotics, fluids and, since we're there, he'll get the Neulasta shot. His WBC and RBC counts are pretty low because he's at the tail end of the chemo infusion. The Neulasta is the white blood cell booster, but they want to make certain he's got as much help fighting this infection as possible, so he'll also be getting a transfusion of 2 units of whole blood. They want him in between 8:30 and 9 which means we need to leave here around 6:30. It's going to be another long day.
The antibiotics have to be given over 3 days and he'll need more hydration, so we'll be going in again on Saturday. If his fever is still hanging around on Sunday, we'll have no choice but to go to the hospital since the Cancer Center isn't open nights or Sundays. The Costco pharmacy is having their holiday party on Sunday and Pete's been invited. At this point, considering his very precarious state, I don't think that he'll be attending.
They disconnected the chemo infusion pump; he had only hours left on it to complete the regimen. They started IV fluids because he was dehydrated and then IV antibiotics, Vancomycin and Cefepime, and of course another bolus of Mesna. The normal blood work was drawn, but they also drew some from the port and from his arm for cultures. Today's nurse, T, explained that they draw from 2 places to compare the cultures and determine whether there is an infection at or near one of the sites, in this case they are concerned about the port. Because of the problems he had with the needle coming out they need to check this out. If the port has become infected it will have to be removed and a new port implanted.
Dr R said that if the fever was not gone by 6 PM, Pete would have to be taken to the hospital and admitted for at least over night, as the cancer center closes at 8 PM and has no overnight facilities. The prospect of hospitalization was not something any of us, including Dr R, was looking forward to. Fortunately, Pete did rally and even ate a half of a sandwich around 3 or so. By the time all the IVs finished it was just a little before 7. We pulled into the driveway shortly before 9.
We have to go back in tomorrow for more IV antibiotics, fluids and, since we're there, he'll get the Neulasta shot. His WBC and RBC counts are pretty low because he's at the tail end of the chemo infusion. The Neulasta is the white blood cell booster, but they want to make certain he's got as much help fighting this infection as possible, so he'll also be getting a transfusion of 2 units of whole blood. They want him in between 8:30 and 9 which means we need to leave here around 6:30. It's going to be another long day.
The antibiotics have to be given over 3 days and he'll need more hydration, so we'll be going in again on Saturday. If his fever is still hanging around on Sunday, we'll have no choice but to go to the hospital since the Cancer Center isn't open nights or Sundays. The Costco pharmacy is having their holiday party on Sunday and Pete's been invited. At this point, considering his very precarious state, I don't think that he'll be attending.
Got Through the Night - December 9, 2010
Pete's fever broke sometime overnight. It was back up to 100.9 at 1 AM so he took another dose of Advil. When I checked him at 4 it was down and he said his headache was gone. He had a toased English muffin with butter a short time ago so he could take his meds, so that tells me he really is feeling better. He's showering now and will be calling the doctor within the next hour to find out whether we'll be going in. I'm thinking we will because he did a bit of sweating last night and sometimes drinking water just isn't really enough to keep hydrated when on chemo.
It's funny how, when he and his sister were little, I would periodically get up to check on them, especially when they were ill and there didn't seem to be any sound or disturbance that would awaken me. It happened less and less as they grew older. When they were young adults and still living at home, I'd sleep through the night and seldom hear them. I guess, though, that I'll always revert back to "mommy-mode", and it doesn't matter whether it's Pete or Bruce or one of the pups. When someone is not feeling well, it seems I sleep very lightly.
It's funny how, when he and his sister were little, I would periodically get up to check on them, especially when they were ill and there didn't seem to be any sound or disturbance that would awaken me. It happened less and less as they grew older. When they were young adults and still living at home, I'd sleep through the night and seldom hear them. I guess, though, that I'll always revert back to "mommy-mode", and it doesn't matter whether it's Pete or Bruce or one of the pups. When someone is not feeling well, it seems I sleep very lightly.
Wednesday, December 8, 2010
Troubling Temperature - December 8, 2010
Last evening, Pete asked for the thermometer because he had a headache and his eyes were burning, the way they do when you've got a fever. It registered 99.8. The critial "chemo therapy" temperature is 100.5; once you hit that it's time call the oncologist, and if you don't get a response quickly get ready to go to an emergency room.
This morning it was 99.2, a slight improvement, but he still had the headache. When he took it around 3 PM it was up to 100.8 at which point he put a call into Dr. R. A took the call and told him she'd check with the doctor, but felt that at this time he should stay put and take it again in about a half hour. If it was up, call back because they'd most likely want us to come in. If it was the same or lower but still over normal, take an OTC NSAID, but be prepared to come in first thing in the morning.
This morning it was 99.2, a slight improvement, but he still had the headache. When he took it around 3 PM it was up to 100.8 at which point he put a call into Dr. R. A took the call and told him she'd check with the doctor, but felt that at this time he should stay put and take it again in about a half hour. If it was up, call back because they'd most likely want us to come in. If it was the same or lower but still over normal, take an OTC NSAID, but be prepared to come in first thing in the morning.
Tuesday, December 7, 2010
Another Unexpected Trip to the City - December 7, 2010
Monday was a fairly normal day, I think. I was going to write about it this morning, but plans seem to have a way of changing at a moment's notice.
Yesterday there were snow flurries most of the day, nothing that you'd call accumulation. There was quite a bit of traffic going in, more than there was on Friday. The visit was unremarkable; blood work, urinalysis and then home. One of Pete's buddies was getting married in the afternoon and he felt well enough to go join in the celebration. Later in the evening he went out with some other friends to watch football.
Pete's prescription for Mesna was supposed to be ready to be picked up in the afternoon, but I just decided that I'd run over Tuesday morning to pick it up and do some food shopping while I was out. I also decided to wait on writing the blog until Tuesday. Best laid plans...
I was up and about to feed the dogs when Pete called and asked me to bring scissors. Somehow that didn't sound good. He was sitting on the edge of his bed and asked me to cut the tape/bandage that covers the needle in his port because he thought that it had come out again. As soon as I got through the adhesive part I could feel that the pad underneath was wet and as I opened it more there was the needle on its side, just the tip poking into the skin next to the port.
It was just about 7 and Pete said that it was fine when he had gotten up around 4. I went back to finish feeding the dogs, knowing we'd be heading to the city shortly. I was getting a cup of coffee when I heard the ominous sound of retching. I ran in to find Pete in his bathroom and the floor between the bed and bathroom doorway pretty splattered. He kept apologizing and said that he had felt fine until he took his sodium bicarbonate and it had just all come back up at breakneck speed and without warning.
I immediately put together a container with lid, a dishpan, towel, roll of paper towels, hand sanitizer, and a few other items that I thought might come in handy on the trip up in case this unexpected nausea should hit again. We were on the road around 8, and it's a good thing we were prepared. He had several more bouts during the drive up. He was able to call the hospital to alert them that we were coming.
He was still feeling nauseous when we got there so they gave him Kytril (IV) to help settle his stomach. Because he hadn't been able to keep any water down he was given IV fluids and because his chemo had been disrupted when the needle dislodged, that meant that the Mesna had also been stopped, so they gave him a dose of IV Mesna. All of that took a good part of the day, so it was after 4 when they finally hooked him back up to the pump. After the 20 minute wait to recheck the pump we were good to go. It was around 4:30.
We had been told on Monday that we didn't have to return until Thursday, when the infusion would be finished. Now that's been changed to Friday to make up for the lost day of infusion between the time the needle came out and when they hooked him up once again.
Traffic was pretty heavy, so it was almost 7 when we got home. I fed the dogs, jumped in the car and drove over to Costco to pick up the Mesna prescription and fill up the car with gas. On the way over I hit what must have been a deep pot hole and winced because it was a hard hit. When I started the car up to head home the tire pressure warning light came on and stayed on. I'm hoping that the hit knocked some air out of the tire but didn't do any serious damage. Guess I'll find out when I check tomorrow morning to see if it's gone flat.
It was a really rough day for Pete. He'd been napping off and on and then just fell sound asleep a while ago so I decided I'd write up our latest adventures before going to bed myself.
Yesterday there were snow flurries most of the day, nothing that you'd call accumulation. There was quite a bit of traffic going in, more than there was on Friday. The visit was unremarkable; blood work, urinalysis and then home. One of Pete's buddies was getting married in the afternoon and he felt well enough to go join in the celebration. Later in the evening he went out with some other friends to watch football.
Pete's prescription for Mesna was supposed to be ready to be picked up in the afternoon, but I just decided that I'd run over Tuesday morning to pick it up and do some food shopping while I was out. I also decided to wait on writing the blog until Tuesday. Best laid plans...
I was up and about to feed the dogs when Pete called and asked me to bring scissors. Somehow that didn't sound good. He was sitting on the edge of his bed and asked me to cut the tape/bandage that covers the needle in his port because he thought that it had come out again. As soon as I got through the adhesive part I could feel that the pad underneath was wet and as I opened it more there was the needle on its side, just the tip poking into the skin next to the port.
It was just about 7 and Pete said that it was fine when he had gotten up around 4. I went back to finish feeding the dogs, knowing we'd be heading to the city shortly. I was getting a cup of coffee when I heard the ominous sound of retching. I ran in to find Pete in his bathroom and the floor between the bed and bathroom doorway pretty splattered. He kept apologizing and said that he had felt fine until he took his sodium bicarbonate and it had just all come back up at breakneck speed and without warning.
I immediately put together a container with lid, a dishpan, towel, roll of paper towels, hand sanitizer, and a few other items that I thought might come in handy on the trip up in case this unexpected nausea should hit again. We were on the road around 8, and it's a good thing we were prepared. He had several more bouts during the drive up. He was able to call the hospital to alert them that we were coming.
He was still feeling nauseous when we got there so they gave him Kytril (IV) to help settle his stomach. Because he hadn't been able to keep any water down he was given IV fluids and because his chemo had been disrupted when the needle dislodged, that meant that the Mesna had also been stopped, so they gave him a dose of IV Mesna. All of that took a good part of the day, so it was after 4 when they finally hooked him back up to the pump. After the 20 minute wait to recheck the pump we were good to go. It was around 4:30.
We had been told on Monday that we didn't have to return until Thursday, when the infusion would be finished. Now that's been changed to Friday to make up for the lost day of infusion between the time the needle came out and when they hooked him up once again.
Traffic was pretty heavy, so it was almost 7 when we got home. I fed the dogs, jumped in the car and drove over to Costco to pick up the Mesna prescription and fill up the car with gas. On the way over I hit what must have been a deep pot hole and winced because it was a hard hit. When I started the car up to head home the tire pressure warning light came on and stayed on. I'm hoping that the hit knocked some air out of the tire but didn't do any serious damage. Guess I'll find out when I check tomorrow morning to see if it's gone flat.
It was a really rough day for Pete. He'd been napping off and on and then just fell sound asleep a while ago so I decided I'd write up our latest adventures before going to bed myself.
Saturday, December 4, 2010
I Forgot One Thing - December 4, 2010
I have found this blog to be very useful as I have referred to it a number of times when Pete and I have been trying to recall when some event relevant to his treatment took place. Yesterday, the needle into his port was changed. I had forgotten to include that until I was talking with my daughter and she asked me something about the needle and I suddenly remembered.
Friday, December 3, 2010
Numbers Still In the OK Range - December 3, 2010
10 AM appointment this morning, so most of the rush hour traffic had already gone through but the traffic on the city streets was pretty heavy. No blood return from his port again, but that's nothing new.
The past 2-3 days have not been very good for Pete. He's had headaches and has complained of that "watery mouth" that precedes an attack of nausea, but that's as far as it went. He was hungry, but wasn't in the mood to eat, though he did manage to have a few small, light meals these past few days. And he's really been feeling fatigued.
This morning I mentioned to him that he was looking better. I can't quite put my finger on it; it's a rather subtle difference and I don't know if anyone else would detect it. He did say that he was feeling a bit better today.
Pete's blood work numbers were okay, well, they're okay for someone in the midst of chemo (WBC 4.1, RBC 3.47, both lower than the normal range as expected) but he did have some blood in his urine. The chemo he is currently getting, Ifosfomide, is given along with another drug, Mesna, which helps protect the bladder from the damaging effects of the Ifos. He has to stay hydrated to assist the Mesna in flushing the bad stuff out but sometimes the amount of water he's supposed to drink is tough to get down. The remedy is to give him a bolus of fluid to rehydrate him, so our hoped-for short stay turned into a longer one.
This isn't the first time for the blood in the urine (it was there last Friday as well) but the nurse assured us that it just a trace and nothing to be alarmed about. Last week, they did a second urinalysis after he finished his bag of hydration and it was clear.
By the time we were heading home, the rush hour had begun; traffic was getting heavy. His next appointment is Monday at 10. A had stopped in and we figured out that Thursday will be Day 8, the day the pump will be removed. At least 24 hours after the chemo ends he'll get his Neulasta shot and then 2 weeks later he'll be going for the scans and stress echo cardiogram. Looking at my calendar, that takes us to the week leading up to Christmas. Gina is coming in from CA on Dec 28 and flying back on New Year's Day. Short visit but the airfares were quite high and this particular itinerary was a bargain so she took it.
The past 2-3 days have not been very good for Pete. He's had headaches and has complained of that "watery mouth" that precedes an attack of nausea, but that's as far as it went. He was hungry, but wasn't in the mood to eat, though he did manage to have a few small, light meals these past few days. And he's really been feeling fatigued.
This morning I mentioned to him that he was looking better. I can't quite put my finger on it; it's a rather subtle difference and I don't know if anyone else would detect it. He did say that he was feeling a bit better today.
Pete's blood work numbers were okay, well, they're okay for someone in the midst of chemo (WBC 4.1, RBC 3.47, both lower than the normal range as expected) but he did have some blood in his urine. The chemo he is currently getting, Ifosfomide, is given along with another drug, Mesna, which helps protect the bladder from the damaging effects of the Ifos. He has to stay hydrated to assist the Mesna in flushing the bad stuff out but sometimes the amount of water he's supposed to drink is tough to get down. The remedy is to give him a bolus of fluid to rehydrate him, so our hoped-for short stay turned into a longer one.
This isn't the first time for the blood in the urine (it was there last Friday as well) but the nurse assured us that it just a trace and nothing to be alarmed about. Last week, they did a second urinalysis after he finished his bag of hydration and it was clear.
By the time we were heading home, the rush hour had begun; traffic was getting heavy. His next appointment is Monday at 10. A had stopped in and we figured out that Thursday will be Day 8, the day the pump will be removed. At least 24 hours after the chemo ends he'll get his Neulasta shot and then 2 weeks later he'll be going for the scans and stress echo cardiogram. Looking at my calendar, that takes us to the week leading up to Christmas. Gina is coming in from CA on Dec 28 and flying back on New Year's Day. Short visit but the airfares were quite high and this particular itinerary was a bargain so she took it.
Wednesday, December 1, 2010
New Pump - December 1, 2010
Late appointment in the city today, so the traffic going in wasn't too bad. The ride in would have been better if we did not have to deal with pouring rain and 50 mph gusts of wind.
The port did not cooperate with a blood return today, so Pete got stuck in the back of his hand. We sat around waiting for the results so that he could get his new pump with the new supply of chemo. All his blood work looked fine. This pump will run 8 days to complete the full 16 day regimen. The nurse secured the needle and the loose end so it shouldn't come out like the first one did. That means it should be done next Thursday (or Friday) and he'll get his Neulasta shot on Friday (or Saturday).
Dr R stopped by and told him he'll be having the scans about 2 weeks after the Neulasta shot and the results will determine the next course of treatment: more chemo, radiation, surgery or some combination of these.
We came home in the early part of rush hour traffic. The next appointment is Friday.
The port did not cooperate with a blood return today, so Pete got stuck in the back of his hand. We sat around waiting for the results so that he could get his new pump with the new supply of chemo. All his blood work looked fine. This pump will run 8 days to complete the full 16 day regimen. The nurse secured the needle and the loose end so it shouldn't come out like the first one did. That means it should be done next Thursday (or Friday) and he'll get his Neulasta shot on Friday (or Saturday).
Dr R stopped by and told him he'll be having the scans about 2 weeks after the Neulasta shot and the results will determine the next course of treatment: more chemo, radiation, surgery or some combination of these.
We came home in the early part of rush hour traffic. The next appointment is Friday.
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