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.
Tuesday, November 30, 2010
Friday, November 26, 2010
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'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.
Thursday, November 25, 2010
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.
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.
Tuesday, November 23, 2010
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.
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.
Monday, November 22, 2010
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.
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.
Friday, November 19, 2010
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.
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.
Thursday, November 11, 2010
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.
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.
Tuesday, November 9, 2010
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.
Saturday, November 6, 2010
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.
Friday, November 5, 2010
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.
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.
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.
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.
Wednesday, November 3, 2010
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.
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.
Monday, November 1, 2010
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.
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.
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.
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.
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