Back Home Again - December 30, 2010

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.

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".

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.

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.

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!

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.

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.

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.

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.

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).

Kindness - December 14, 2010

I would be remiss if I did not mention that many people have shown great kindness and generosity through all of this. On behalf of Pete, thank you to all who have offered prayers, healing thoughts and all manner of gifts and expressions of caring and concern. I cannot even begin to express how much they are appreciated. Thank you again.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

New Pump Tomorrow - November 30, 2010

Sunday evening Pete told me that his father would be driving him into the city for his Monday appointment. It does give me a "day off" but it doesn't really give me a break psychologically. I actually think I'm more on edge when I'm not there. His lab results seem to be on track, so tomorrow (Wednesday) we'll be going in for more blood work and also to get the next 8-day chemo pump.

I don't think I mentioned this in any earlier posts, but I'm reading an excellent and interesting book, The Emporer of All Maladies: a Biography of Cancer by Siddhartha Mukherjee. I'm including a webpage here that includes an audio interview with the author and also an excerpt from the book. A video interview is here.

Back on Track - November 26, 2010

A had told Pete to arrive at NYU Cancer Center early so we left home about 6:15 AM. As we were driving out of our neighborhood I wondered out loud about the traffic, hoping that people may have taken a long holiday weekend. Our hopes were up that this was the case as we headed North along with just a few cars on the GSP. The usual bottleneck onto the NJ Tpk was no where to be found, Exit 14 was empty and there was virtually no traffic leading into the Holland Tunnel. We walked up to the security desk a few minutes before 8 and were told we'd have to sit in the lobby until 8:30 before we went upstairs since the treatment area doesn't officially open until then.

Pete's nurse for today was MM, attentive, attractive and very personable. Pete's port didn't want to cooperate when she tried for the blood return, so she decided to just hook him up to the saline until A gave directions on what to do with the remaining chemo and pump. She came back in a short time later, tried for a blood return again and wonder or wonders, it worked and gave up 4 test tubes of blood. Until they got the results, though, Pete was just in a holding pattern and just getting a small bag of fluid.

 A came in after a while and told us the results were good and that the pharmacy was resetting the pump to pick up where it had left off. In the mean time, she wanted Pete to get a large bolus of hydration and an extra bag of Mesna (anti emetic) before they hooked him back up to the pump. The hydration is a 4 hour bag, the Mesna is 1 hour and we'd already been there a little over an hour. I went out around noon for a walk and picked up some lunch for us from a deli on my way back.

Pete was finished and all hooked up shortly after 3 PM. MM taped the leads from the pump to the port so it hopefully won't be unhooking itself again unexpectedly. Traffic was almost as light on the way home as it had been in the morning. We pulled into the garage a little past 5. As of today the schedule will have us going back on Monday for blood work and then again on Wednesday for more blood work and also to get a new pump with the next 8-day chemo supply. That's all for now.

Pete Unplugged - November 25, 2010

Holidays. I think I'll just stay in bed the next time one comes around.

I woke up early today thinking about what I'd do first to get Thanksgiving dinner moving. As I walked past Pete's door he called to me so I went in to say good morning. What he told me was that somewhere between the time he fell asleep and 1 AM the needle going into his port had come out. That means the chemo infusion was stopped. I told him he should have gotten me up and asked him if he had called the doctor. The answer to both was something about it being the middle of the night. Of course I wanted him to call the hospital right then but he refused, saying it was still too early.

I finally convinced him to call the number we had been given for the hospital but when he did they told him that it was a physicians' answering service but that there was no Dr R on their list. I talked him into calling the cell phone number we had been given that was supposed to be a direct line to A, but at 6 AM there was no answer so all he could do was leave a voice mail message for her.

So what now? It seemed pointless to go to our local hospital ER because neither of us had a clue as to what was supposed to be done and we doubted that anyone at the hospital would have any idea either. It was out, had been for several hours, and who knows if it could cause some type of complication if it got put back in. Best to wait for a call back.

I had the same telephone number as Pete did for the service, so apparently there was some mistake somewhere, so I went online to NYU and found a number, differing from the one we had by one digit and when Pete called this new number it was Dr R's service. So we waited.

I kept pestering Pete to try the cell number again and he said he would, but not before 9.

I guess I was expecting to get a call back any minute and that we might have to head into the city on a moment's notice. Not an ideal thing to do, considering the traffic mess that we had encountered coming home the night of the Halloween parade. The Macy's Thanksgiving Day parade was scheduled to start at 10 and was going right though some of the streets that we would use to get to the hospital. I called my sister and gave her the heads up that Thanksgiving was on hold until we knew what was happening.

At 9 Pete made a second call to the cell number. 10 o'clock rolled around and still no call back. My sister's prediction that we'd get a call as soon as I started making dinner actually was what made me decide to begin getting things in order. It was somewhere around 11 that I put the bird in the oven. Any minute the phone should ring. It didn't.

I had stuck the meat thermometer into the bird but as it got closer to the time that it should be done the temperature just didn't seem to be going up. Guessing that my thermometer had probably died, I called my sister and asked if she would bring hers over. As soon as she arrived I put hers in and it read the same low temperature that mine had shown. Everything else, the mashed potatoes, green beans, sweet potatoes, was nice and hot and ready to eat. I turned the oven temp up to see if that would make a difference and we started on the hot stuff. When I checked the temp again and it still hadn't budged (it had stopped at 120) I pulled the pan out and started cutting and placing the slices and stuffing into a pyrex dish and stuck it in the microwave where it finally reached the prescribed temperature. Great time for my oven to die.

Pete finally got a call from A this evening. We had been scheduled to go in tomorrow morning, so it looks like we're just going to stick with that plan.

It is Thanksgiving, so I guess I can say that I am very thankful that the needle came out with the Ifos and not when he was getting the Adriamycin (Doxorubicin) because D had told us that if Dox contacts tissue outside the vein it causes a horrible raw and painful ulcer that takes a long time to heal.

A Bit of a Respite - November 23, 2010

Today was considerably shorter than yesterday's marathon. We left home a bit later than we did yesterday but arrived just about the same time. I often marvel at the lack of rhyme or reason when it comes to commuter traffic flow. Pete's nurse for yesterday and today, A3, got a healthy blood return both days. Similar to the traffic, you just shrug your shoulders at the unpredictability of Pete's port, giving a sigh of relief or cursing it under your breath as the nurse attempts to access it to draw blood.

After the usual weigh-in and taking of vitals was completed, A3 checked the pump, then hooked Pete up to a small bag for hydration. Dr R and A came in and gave us the hopeful news that if the blood work came back in good order and Pete felt that he would be able to drink enough water to maintain the necessary hydration level we could skip tomorrow and not return until Friday.

Dr R seems to feel that because of this new protocol that he learned about at the CTOS conference last week, Pete should not experience the low point on days 4-5 that he had experienced with the last 2 rounds of Ifosfomide. He'll be getting the same amount of drug, but administered over a longer period of time, so its toxicity is lessened. On our drive home Pete admitted that he was dubious that it would not occur, so I tried to get him to wait and see and not be so pessimistic.

Pete's IV was almost finished when A3 came in to give us the word that all the numbers were good and we could leave as soon as the bag was empty. When the alarm went off to indicate it was done, she came in, unhooked him, and we were on our way. We pulled into our driveway a little after noon.

14 Hour Day - November 22, 2010

We were up and on the road before 6:30 this morning. No real problem finding the NYU Cancer Center but it would be a whole lot easier if NY city didn't post a "No Right (or left) turn" at the exact corner that I need to make that particular turn.

Parking was different because it was really simple. You pull your car up in front of the hospital and they have valets who whisk your car away. You call them 15 minutes before you're ready to leave and the car is waiting for you right outside the lobby. It's a flat $19 fee for either 8 or 12 hrs, not sure which, and then there's an added fee if it goes beyond that. Considering the normal parking garage fee in the city, that's a real bargain.

NYU falls somewhere between Sloan-Kettering and Beth Israel as far as facilities go. Sloan felt older and colder. When Pete was going there for chemo treatments I don't recall there being any TVs. They weren't forthcoming with offers of any kind of adjuvant services. Beth Israel was much more warm and comforting. They have individual flat-screens for each patient. They were always offering all kinds of services, such as the acupuncture, Reiki, nutritionist, social worker, psychiatrist, etc. NYU has a more welcoming atmosphere than MSKCC, but not quite as reassuring as Beth Israel. NYU has individual TVs but they're the big clunky CRT TVs of years past. They offered massage therapy, nutritional counselling and a social worker.

Dr R just returned from the CTOS conference in Paris so things were a little unsettled following the very recent move to NYU from Beth Israel. A had been getting things organized and sorted through, but since each facility has its own way of doing things with required forms and paperwork, things moved a bit slowly this morning. I have to admit that I miss having D and the other nurses who had been working with Dr R for so many years. The nurse that was assigned to Pete today was very nice and thorough, but she's not at all familiar with Dr R's methods and procedures.

We had expected that Pete was going to have a second round of Cisplatin and Adriamycin, so it took us by surprise when A told us that Pete was going back to the high-dose Ifosfomide. It is going to be administered a bit differently than the last two doses. When Dr R came in he explained that he was going to be using the method that has been producing good results with less toxicity at M D Anderson. The chemo will be administered a bit more slowly, but still continuously, over a longer period of time. Instead of 8 days, Pete will be wearing the pump for 16 days. He wasn't at all happy to hear that. He was chomping at the bit to get rid of it after a week; the thought of having to wear it for over 2 weeks made him a very unhappy camper.

I don't know how coherent this all is. We pulled into our driveway a few minutes before 8 PM; making our day just a bit shy of 14 hours. We go back tomorrow and Wednesday and both should be shorter days. The blood work will determine whether we go back again Friday or if it can wait until Monday or Tuesday.

Stress Echo Cancelled; Start Chemo Monday - November 19, 2010

Pete was almost set to have the Stress Echocardiogram at 6:30 AM on Thursday but he got a call Wednesday from the hospital where it was scheduled to be done that the person who does them was out sick and they would have to reschedule. I said that he was almost set to have it done because he was also waiting for the original prescription to arrive in the mail and it had not arrived as of Wednesday's mail delivery.

He put a call into his oncologist to aprise him of what had happened and that he still did not have the script. When he heard back, the doctor said that he didn't want to hold the chemo up because the hospital could not give any date for a reschedule for the Echo. Today he was notified that the next round of chemo will begin on Monday, November 22.

So that's where we stand right now.

Smooth Sailin' - November 11, 2010

The results of the last blood test were good. The numbers are moving in the right direction so he won't have to go for any more blood work for at least a week or two. The ringing in his ears is diminishing very slowly. The next thing that he has to look forward to is the echocardiogram. He'll probably be getting the prescription for it from his doctor some time next week.

I'm wondering, though, if he might actually be getting a MUGA scan, because when Dr R had spoken about it he had mentioned he wanted it done while Pete was exercising, and I don't think a regular echocardiogram is done during exercise. I guess we'll find out soon enough.

WBC Starting to Rebound - November 9, 2010

Monday's blood work showed a low WBC. His blood work yesterday indicated that his WBC is starting to rebound; it should have hit its nadir the other day. He goes back to his local oncologist tomorrow for another blood test to make certain that upswing is continuing.

Quiet Weekend - November 6, 2010

It seems this weekend is just a bit more quiet than it could have been on two counts. We don't have to go into the city for blood work today. Pete will be going to his local oncologist on Monday morning to have it tested and they'll fax the results to Dr. R. Also, the ringing in his ears has lessened a bit but he says that it's still quite annoying.

Why? - November 5, 2010

Sometimes you've just got to wonder why people do what they do.

One of the first things I grabbed before I left the house to drive up to the hospital on Sunday was Pete's cell phone charger. As soon as I got there we plugged in his phone. Unfortunately, after the phone was charged he unplugged it from the charger, but did not unplug the charger from the wall, so consequently it was still there when we exited.

We realized it once we were home so I called the hospital and tried, unsuccessfully, to talk to someone who could understand what I was saying. I decided to wait until the next day and see if I could get through to an English speaking person with some level of intelligence.

I was able to speak with a woman who said she was the clerk at the nurses' station that handled the room that Pete had been in. I explained about the charger and she was able to locate it in short order and assured me that it would be waiting at her desk on Thursday when I promised her I would be able to retrieve it.

Thursday was Pete's followup appointment for blood work and vitals checkup at the Beth Israel Cancer Center. There was a steady rain as we drove into the city. They drew the blood but a short time later, D came over to Pete and sent him back to the lab for a do-over; there was a problem with a high potassium reading and they wanted to recheck it. She came in a short time after that and told us that it was going to be a while because they were having technical problems with the machinery that performs the test.



This is Pete's charger



I took this as a good opportunity to jog over to Beth Israel Medical Center to pick up the charger. The Cancer Center is on 15th between 8th & 9th; the Medical Center is on 16th, right off of 1st, just slightly over 1 mile apart. I pulled my hood over my head and set out on my jog/walk in the rain. It just happened that the resident who had seen Pete and been instrumental in securing his release was at the nurses' station when I got there, recognized me and asked what I needed. She graciously took the time to help look for the charger after I explained the situation. She and a nurse, one who had also been on duty when Pete was there on Sunday, did a bit of searching and found a zip-lock "bio-hazard" bag labeled "found in 6A" and containing a phone charger. Success! Or so I thought.


I jogged/walked back to the Cancer Center where Pete was still waiting to hear the results of the second blood draw. I was pretty much soaked from head to toe but fortunately it wasn't a bitterly cold day, temps were in the low 50's, and I was able to dry off a bit. It wasn't too long after that D gave Pete the new results and we were on our way back home.


This is what was in the bag

Once in the house I handed Pete the recovered charger but when he took it out of the plastic bag he found that it was not the charger he had left behind. His was labeled with his name and it was a 2-piece charger that plugs into either an outlet or a USB port; this one is a generic wall charger. Why did someone switch chargers? I guess they preferred Pete's charger to the one they had. At least he did get a charger and it does work with his phone.


A and D had told Pete that he needed to have follow-up blood work today. Since he had an appointment with his local oncologist, Dr W, this afternoon, they agreed to let him have it done here and faxed to them. He got back a short time ago. His WBC has gone down, so he just put in a call to Dr R's team and is waiting for a return call. We may be heading back into the city tomorrow if they think there's a problem.

Do You Hear What I Hear? - November 3, 2010

We just got back from breakfast a short time ago and Pete ate a very respectable meal which means his sense of taste is recovering and his appetite is returning. He's feeling quite well; his biggest complaint is that he is experiencing ringing in his ears, one of the possible side effects of Cisplatin.

Some time ago he had made an appointment for tomorrow with his local oncologist to keep him apprised of his progress but he will have to change that because he's scheduled to go back to see Dr R tomorrow. He'll most likely get a prescription for an echo cardiogram because of his recent heart rate issues which may be related to the Adriamycin.

Pete's been very fortunate in that, except for an occasional bout of queasiness, he has not suffered one of the most common side effects of so many of the chemo drugs which is nausea.

Back For Follow-Up - November 1, 2010

We were back on the road around 8:30 this morning. Pete had begun having a bit of a problem with diarrhea yesterday evening and earlier this morning. He was a bit nervous about facing the drive up, but there are several rest areas along the GSP and TPK.

They drew blood and recorded his vitals and everything looked good. When he told D of his latest problem she became a bit concerned and gave him a complete kit and instructions on collecting a stool sample for a culture as it could be an intestinal infection of some sort. Let's just say there wasn't enough solid evidence for them to test, so she instructed him to eat a bland diet of boiled rice and gave him a couple of prescriptions. He's to call her tomorrow and give her a full report.

He spoke with Dr R and A and as long as his bowel problem begins to resolve itself, he won't be going back until Thursday. It was also recommended that he periodically take and record his blood pressure and pulse to see if low numbers may just be normal for him.

We were home by early afternoon. Bruce and I had grocery shopping and several errands to run, so it was almost dinner time when we were finally back home. I've spent this evening sitting at the computer finishing up the blogs for yesterday and today. Hopefully, things will be uneventful and I won't have anything to post between now and Thursday's appointment with the doctor.

Halloween, NYC Style - October 31, 2010

Pete's father stayed with him overnight. They waited in the ER until almost midnight when he was finally transferred to a semi-private room in the cardiac wing. I wasn't there, but it was, as Pete described it, an experience he does not want to ever repeat.

I called the hospital first thing Sunday morning to learn his room number and immediately downloaded and printed directions to the hospital from MapQuest. Just as I was backing out of the driveway some time between 9:30 and 10:00 AM, Pete's father called. He said that he had just left the hospital and was about to head home, so our timing couldn't have been better.

I felt as if my car was the only one on the road; in truth, it practically was. There was absolutely no traffic on the way in. I had to make a few extra turns once I was in sight of the hospital in order to find the hospital parking garage. Took care of that and then off to find Pete. It was a little past 11.

He was not a happy camper. He had a miserable night and every time he moved or a nurse or orderly came into the room they were loudly and vehemently cursed at by his roommate. In all fairness, he was an elderly gentleman, a retired RU physics professor, who was recovering from a heart attack that occurred while he was in the hospital for a fall that resulted in a broken hip. From his behavior and overhearing his conversations with the many family members who were visiting him while I was there, I'm going to surmise that he is also suffering from some form of dementia/Alzheimer's. It certainly made our time there interesting but not necessarily enjoyable.

Pete's PCA was a wonderful, friendly and attentive woman, and the direct antithesis of the nurse assigned to care for him. I got the distinct impression that she had many more pressing things to do than to address the needs of the patients under her care. More about her later.

Some time before I arrived, two different doctors had visited with Pete. Neither had any idea why his heart rate had dropped so low (it had gone as low as 32 bpm), but what seemed to baffle them even more was the fact that he had no other symptoms normally associated with such a slow pulse. All blood work was good; EKG was good except for showing the low rate, but it was increasing, and Pete was feeling well, so that was encouraging. The main problem, he was told, was that only Dr R or one of his associates could give consent to release him, and the earliest the associate would be in the hospital would be Monday. That did not sit well with Pete. He placed a call to his nurse at the Cancer Center, who in turn called A to see if anything could be done to move things along.

Shortly after 1 PM, the attending came in and after checking all of Pete's information, reports, and listening to what he told her about being so unhappy about staying, she said she would call Dr R directly. It was just about 2 PM when she came back after talking with Dr R. He gave permission to release Pete when his blood counts were checked once more, after he was given 2 doses of magnesium, and with the condition that he come in to the cancer center tomorrow. After Pete promised he would, she told us she was going to give the order and directions to his nurse, and that he would be getting those doses IV soon. A different nurse came in to take his vitals and draw blood one more time.

It was not long afterward that the attending came back in with a very concerned look on her face. "I'm afraid I have some bad news. You might not be getting released. Your white blood cell count is off the charts." I could see the shock in Pete's face, so quickly said, "He had his Neulasta shot yesterday," and with that she gave a big smile and began to laugh with relief, saying, "That would do it."

Pete was starting to feel a bit hungry, which was a very good sign considering that the last solid food I can recall he had eaten was on Tuesday, before his first day of chemo. He did have a bottle of Ensure one morning, but I think that was Thursday. Each bag of magnesium takes an hour, so I decided, with Pete's urging, to go for a walk and on my way back would pick up a couple slices of pizza for both of us.

When I got back around 3 the nurse had not yet come around. A different PCA stopped by to see if he needed anything, so he asked her about getting the infusion started. She checked and came back to tell us that the nurse was busy with another patient right at the moment but would be in as soon as she finished.

Around 4 PM, I walked down to the nurses' station and asked when the magnesium IV was going to be started because the doctor had given orders that Pete was to be released as soon as that was complete. She checked on the computer and apparently found those orders and promised to advise Pete's nurse to begin the IV. It wasn't until just before 6 PM that the nurse finally showed up and hooked up the first ml bag of magnesium. While she was hooking it up she was complaining that she didn't understand why the doctor hadn't just ordered this be given orally, commenting that pills would have been so much easier.

A short time later the night nurse stopped in and introduced herself. She seemed much more pleasant than the day nurse and when the alert beeped when the first bag emptied, she came in immediately and started the second bag. She must have been watching the clock because she came back as soon as the second bag was finished and started unhooking the tubes. She hesitated when she got to the port and said that it should probably stay in. Pete said that he was done with chemo and that it could be taken out.

I got an uncomfortable feeling when I saw how she was looking at the tubing. She began removing the adhesive "skin" covering the needle, then stopped and left the room. She was gone several minutes and I commented to Pete that I thought she went to read up on how to remove the needle. When she came back I could tell she was nervous, especially when the adhesive kept sticking to her glove. I was just about to say something because it appeared that she was going to try to remove the needle by sliding it out the way you would slide a regular IV needle out instead of lifting it out perpendicular to the skin, when she suddenly stopped and scurried from the room. A few minutes later, another nurse came in with some papers in hand and said that these were Pete's discharge papers. Just as she finished going over them, the nervous nurse came back in. I suspect she had been standing just outside the door waiting for the right moment. The discharge nurse looked over at the wad of adhesive and said, "Oh, let me take care of that for you" and quickly and confidently, with nervous nurse closely watching, correctly pulled the needle out.

We were up and out of there so fast Pete was still putting his jacket on as we hurried down the hall toward the elevators.

The hospital was filthy. The restroom had a distinct odor of urine. The toilet didn't completely flush on the first try and when you turned the water on to wash your hands you had to be careful because the drain was clogged and the basin quickly filled with water and took forever to empty.

The lunch that they had brought in to Pete around 2 PM was cold. I'm not sure what it was, but I think it was supposed to be baked ziti with a side of mixed vegetables. It looked anything but appetizing, as if both had just been chopped up and then thrown on the plate. They started to bring in dinner around 7 PM, but Pete told them to take it back, that he wasn't hungry, so I don't know what it was or what condition it was in.

There was so much more unpleasantness at that hospital, but at this point it doesn't matter. We were finally in the car and headed home. Unfortunately, the NYC Halloween Parade was in full swing and it was headed up one of the streets between where we were and where we wanted to be. It took us almost an hour and a half to travel less than a mile. The masses of costumed people were largely contained behind the police barricades, but wherever there was an opening, crowds would spill onto the streets to block any possible movement of traffic. Police were everywhere you looked, but there were so many people it seemed that the individual officers preferred to look the other way when one of these groups left the sidewalk and headed into the street because to do otherwise might have been enough to cause these raucous revelers to become hellacious hellions.

We finally pulled into our driveway just before 11 PM. Pete took a quick shower and went to bed. I just went to bed.

ER Plus Updates - October 30, 2010

Pete's father picked him up this morning for his final day of hydration. I sent a text to Pete around 11 and about a half hour later I got this message back from him: "Very low pulse rate - 40s. Gonna hook me up to ekg, might get lasix b/c of fluid retention. I'll know more later."

The next message came shortly after noon: "Sending me to er b/c of h r. Precautionary. Phone batt dying, gonna keep comm to min, just what is necessary. feel ok, other than tummy."

I then texted his father who replied: "my battery is low too" and then around 1:30: "at beth israel mc 16th st 1 ave. pete's heart rate low everything else seems ok. no treatment yet just monitoring in the ER. battery low. I'll keep in touch."

It's now almost 3. I texted a short time ago asking if they'd heard anything from Dr R or A, and if the plan is to keep him overnight. No word yet. It's hard not to jump in the car and drive up there, but I'll wait and hopefully hear more soon.

4 PM Update: I called Beth Israel ER.  After explaining the situation and spelling his name several times, the conversation went something like this: Nobody by that name here. Are you sure? I know that he was transported from the Beth Israel Cancer Center around noon. Oh. Then he was probably discharged. Are you sure? Could you check? Maybe he was admitted? Oh. Yeah, maybe he was admitted. Could you check? Can you connect me to a main number? Or maybe you could give me the main number I so can call. No. No!?!? Do you have a main number that I can call? What do you mean? (Very slowly now, trying to control my temper; taking a few deep breaths.) Can you please tell me the main telephone number for the hospital so I can call it and try to locate my son? No. Ok. Thank you. Click.

Google Beth Israel and find the telephone number. I call and explain that I'm trying to locate my son who was taken to the ER and that I just spoke to the ER person and they told me he was admitted. Nobody here by that name. Maybe he's still in the emergency room. (Hello? Is anybody home? Didn't I just finish telling you that the person in the ER said that he's not there?) The person in the ER told me that my son was admitted. Why don't you call the ER? (This is going nowhere but in circles.) Ok. Thank you. Click.

I call the ER again. Tell the story again; spell the name again. B as in "boy"... Could you wait? (Music immediately starts playing...) I picked up my cell and texted Pete's father: "Where is he? calling hsp and they can't find him."

A few minutes later, Pete texts me: "Admitting me for overnight. wish i had better chrg on phone, will call you when I get 2 my room. Feel Fine." (I'm still on hold with the music sweetly playing, but at this point I'm not exactly sure why, so...) Click.

7 PM Update: Pete called a little while ago. He's still not assigned to a room and was told that he might not get one for another 5-6 hours. He said his father is probably going to stay up there tonight and mentioned something about "camping out". His heart rate is still quite low but is higher than it was earlier when it had gone down into the 30's. The normal resting heart rate (pulse) for an adult is 60-100 bpm; for well condtioned athletes it is 40-60 bpm. Because his is abnormally low, they're keeping him overnight for observation. He told me that he'll be turning off his phone to conserve the battery.

Another Hydration Day - October 29, 2010

Today was six hours of hydration in the hospital and then sent home hooked up to another bolus.

Pete was having some pain just below the ribcage and told A2 about it when we arrived. Shortly after that Dr R and A came in to check on him and the consensus was that it was gastritis/heartburn, a common side effect of Decadron. This drug has been added to the fluids he's been getting because it helps combat nausea. It wasn't administered today and instead he was given famotidine (aka Pepcid) to relieve the discomfort. It seemed to lessen a bit but didn't go away completely, so later in the day A2 brought him several TUMS to take.

He slept just about the whole time he was there, slept much of the ride home, walked into the house and went to bed. I think his father offered to take him in tomorrow, but I'm not certain of that. I don't mind going and I've been doing quite a bit of walking while I'm in the city. I downloaded a neat high-tech "pedometer" app on my Droid that uses GoogleMaps and the GPS to track distance, pace, time, etc. and I'm having fun learning to use it.

The Red Devil - October 28, 2010



The Red Devil



Today's treatment began at 10 with the administration of some fluids. Because Adriamycin (aka Doxorubicin and nick-named "the Red Devil") is a vesicant and can destroy muscle, skin and any other tissue if it leaks out of the vein, D was very concerned with getting a good blood return from the port. After some mild resistance initially, Pete's port decided to finally behave and she managed to coax it into giving up the blood readily. After the infusion began, D came in several times and checked to see that all was well at the port site.

Dr R and A came in and checked on Pete shortly after we arrived. He palpated the areas on Pete's legs where the masses are located and was quite happy that they are so small that they are almost impossible to feel.



DogNY, similar to the Cows
a few years back



Pete slept most of the day. It was an absolutely beautiful day though quite windy. I took advantage of the weather and went for 2 walks, one in the morning about 2 miles just walking city streets, and again in the afternoon over to Hudson River Park, about 4 miles.

I ran across the dog on my morning walk. It was a few blocks south of the hospital in the shadow of a huge building that still bore the "St Vincent Medical Center" logo. The wall with the inscription is along the Hudson River walk. I had passed by there several other times, but I don't recall ever seeing it before. When I researched it, it turned out to be the NY city AIDS memorial. The words are from "Vem kan segla", a Swedish folk song.



"I can sail without wind, I can row without oars,
but I cannot part from my friend without tears."


Pete finished up the last hydration bag around 4:30 and was sent home once again hooked up to another 2 liter bag. Tomorrow we go back, but there will be no chemo, just hydration, and if his bloodwork numbers look good he may not have to go back on Saturday. We'll find out when those results come in.