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.
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