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.
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