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.
Saturday, October 30, 2010
Friday, October 29, 2010
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.
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.
Thursday, October 28, 2010
The Red Devil - October 28, 2010
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.
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| 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.
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| 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.
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| "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.
Wednesday, October 27, 2010
A Long Day - October 27, 2010
The traffic wasn't too bad, especially considering that we were pretty much driving at peak commuter time, and the heavy rains that had been predicted turned out to be just a light shower here and there. We left the house about quarter past six and arrived right at the appointment time of 8:30.
A stopped in to go over what was on the agenda and because Pete has a single port it was decided to just infuse the Cisplatin and Mannitol today. She talked about the possible side effects of the Cisplatin and explained that the fluids need to keep moving through his system to protect his kidneys. She warned that of all the chemo drugs, it has a reputation for causing the most severe nausea. To combat this he also received several antiemetics along with the fluids. It was after 5 when D finally disconnected him from the fluid and sent him home hooked up to a 2 liter bolus of fluid mixed with more antiemetics to continue hydration over night and ward off nausea.
Tomorrow it will be back for blood work, the Adriamycin and more fluids.
A stopped in to go over what was on the agenda and because Pete has a single port it was decided to just infuse the Cisplatin and Mannitol today. She talked about the possible side effects of the Cisplatin and explained that the fluids need to keep moving through his system to protect his kidneys. She warned that of all the chemo drugs, it has a reputation for causing the most severe nausea. To combat this he also received several antiemetics along with the fluids. It was after 5 when D finally disconnected him from the fluid and sent him home hooked up to a 2 liter bolus of fluid mixed with more antiemetics to continue hydration over night and ward off nausea.
Tomorrow it will be back for blood work, the Adriamycin and more fluids.
Tuesday, October 26, 2010
PET-CT Results and New Treatment - October 26, 2010
There's been a change in the date for Dr R to move to NYU and neither he nor A are exactly sure of when the official move will take place, so until such time, Pete will continue going to Beth Israel.
The 10 AM appointment with Dr R was preceded by a quick check of Pete's vitals. With that finished, we went into the doctor's office where he was waiting with the scans already up on his computer screens. A was there with the written report in hand.
He began by asking Pete how he was feeling, did he have any pain. Pete responded that he's been feeling pretty well but still has some discomfort in the area of his left shoulder blade, but assured the doctor that it is minimal and that he has not needed any pain medication.
Dr R went over the scans with us very carefully, again pointing out various areas and explaining as he went through them. First the good news. The tumors in both legs are not only significantly smaller, but are also exhibiting considerably reduced activity levels, from numbers in the 20's now down to 3. With the exception of the large tumor in his left lung, all the others in his lungs appear to have diminished in both size and activity. There is no indication of anything in his brain, and his liver, kidney and other internal organs all appear clear.
Although that large tumor in his lung seems to have decreased slightly, the area seems to still be quite active. Dr R seems quite confident that this may actually be due to the fact that as the tumor is receding from the bone (ribs), those bones are going through a process of repairing themselves which would also be recorded as an area of heightened activity on the PET scan.
The one item of concern stems from the fact that the previous PET scan, though supposedly full-body, stopped at Pete's elbows. This latest scan went right to his finger tips and picked up a spot on his left arm just below his elbow in line with his thumb. The doctor mentioned that it may require an MRI of the area to examine it more closely. Having no other scan for comparison with this finding but with all other tumors reduced, the doctor feels that this may have already been present before the Ifosfomide infusions began.
Before leaving, Pete was directed to stop in at the lab to have blood work done because tomorrow morning we'll be back there by 8:30 AM to begin the next course of treatment. This time it will be Adriamycin and Cisplatin and what sounds like a whole lot of fluids to prevent dehydration. As I understood it, the two chemo agents will be delivered on the first day and then the next three or four days will require going back in for monitoring and to get hydration packs, which he'll be hooked up to and wear until we go back the next day and get another bolus.
Depending on how this next treatment goes, Pete may have a total of 2 or 3 rounds of these two drugs. I don't know how much time there will be between rounds, but so far things appear to be heading in a positive direction and Pete's tolerated everything pretty well. No reason to expect anything else this time.
While we were chatting with Dr R, waiting for A to come back with some copies, I asked him if he would be attending the CTOS conference in Paris during the second week in November. He seemed surprised that I knew about the upcoming meeting and asked where I had heard about it. I told him it was through the Sarcoma Alliance. He asked if it was through SA that I had learned of him. I answered yes, and told him it was E who suggested he might have more treatment options to offer Pete. He and A acknowledged that she has been a patient of his for several years. When I mentioned DM, he smiled and said, "He's the guy with the pony tail."
The 10 AM appointment with Dr R was preceded by a quick check of Pete's vitals. With that finished, we went into the doctor's office where he was waiting with the scans already up on his computer screens. A was there with the written report in hand.
He began by asking Pete how he was feeling, did he have any pain. Pete responded that he's been feeling pretty well but still has some discomfort in the area of his left shoulder blade, but assured the doctor that it is minimal and that he has not needed any pain medication.
Dr R went over the scans with us very carefully, again pointing out various areas and explaining as he went through them. First the good news. The tumors in both legs are not only significantly smaller, but are also exhibiting considerably reduced activity levels, from numbers in the 20's now down to 3. With the exception of the large tumor in his left lung, all the others in his lungs appear to have diminished in both size and activity. There is no indication of anything in his brain, and his liver, kidney and other internal organs all appear clear.
Although that large tumor in his lung seems to have decreased slightly, the area seems to still be quite active. Dr R seems quite confident that this may actually be due to the fact that as the tumor is receding from the bone (ribs), those bones are going through a process of repairing themselves which would also be recorded as an area of heightened activity on the PET scan.
The one item of concern stems from the fact that the previous PET scan, though supposedly full-body, stopped at Pete's elbows. This latest scan went right to his finger tips and picked up a spot on his left arm just below his elbow in line with his thumb. The doctor mentioned that it may require an MRI of the area to examine it more closely. Having no other scan for comparison with this finding but with all other tumors reduced, the doctor feels that this may have already been present before the Ifosfomide infusions began.
Before leaving, Pete was directed to stop in at the lab to have blood work done because tomorrow morning we'll be back there by 8:30 AM to begin the next course of treatment. This time it will be Adriamycin and Cisplatin and what sounds like a whole lot of fluids to prevent dehydration. As I understood it, the two chemo agents will be delivered on the first day and then the next three or four days will require going back in for monitoring and to get hydration packs, which he'll be hooked up to and wear until we go back the next day and get another bolus.
Depending on how this next treatment goes, Pete may have a total of 2 or 3 rounds of these two drugs. I don't know how much time there will be between rounds, but so far things appear to be heading in a positive direction and Pete's tolerated everything pretty well. No reason to expect anything else this time.
While we were chatting with Dr R, waiting for A to come back with some copies, I asked him if he would be attending the CTOS conference in Paris during the second week in November. He seemed surprised that I knew about the upcoming meeting and asked where I had heard about it. I told him it was through the Sarcoma Alliance. He asked if it was through SA that I had learned of him. I answered yes, and told him it was E who suggested he might have more treatment options to offer Pete. He and A acknowledged that she has been a patient of his for several years. When I mentioned DM, he smiled and said, "He's the guy with the pony tail."
Friday, October 22, 2010
Appointment Set - October 22, 2010
Pete's appointment to find out the results of Thursday's PET scan is Tuesday, October 26, at 10 AM.
Thursday, October 21, 2010
PET Scan - October 21, 2010
Pete's been feeling pretty well and since he'd just be having a scan it seemed to be a reasonable thing for him to drive into the city himself. As with any venture into NYC, however, you never know what you'll run into on the way. Since the scan was not being done at Beth Israel but rather at an imaging facility farther uptown closer to Sloan Kettering, Pete was following the directions provided by his GPS. It seems that the NYPD officers had other ideas and where the GPS told him to turn left to get to his destination, the police told him to just keep going straight. That took him through the Queens Midtown Tunnel and he then had to navigate his way out of Queens back to where he was supposed to be. Consequently he was a half hour late for his appointment.
The PET, including prep time, takes about 3 hours and you're supposed to lie still during the actual scan. Pete said he fell asleep and they had to wake him when it was finished. Consequently, he forgot to pick up his copy of the CD to take to his appointment with the doctor tomorrow. He realized it when he got home so called L, the doctor's secretary. She said that the facility would be sending the disc to the doctor, but it sometimes doesn't arrive the next day, so she advised Pete not to worry and that she would call him to reschedule the appointment after the CD was received.
That's all for now. We'll just wait for the call to let us know the day and time of the appointment to get the results of the PET scan.
Check "Other Stuff" for update on Pan and my head wound.
The PET, including prep time, takes about 3 hours and you're supposed to lie still during the actual scan. Pete said he fell asleep and they had to wake him when it was finished. Consequently, he forgot to pick up his copy of the CD to take to his appointment with the doctor tomorrow. He realized it when he got home so called L, the doctor's secretary. She said that the facility would be sending the disc to the doctor, but it sometimes doesn't arrive the next day, so she advised Pete not to worry and that she would call him to reschedule the appointment after the CD was received.
That's all for now. We'll just wait for the call to let us know the day and time of the appointment to get the results of the PET scan.
Check "Other Stuff" for update on Pan and my head wound.
Tuesday, October 19, 2010
Changing Places, Changing Days - October 19, 2010
Last week Dr R was with Beth Israel Cancer Center, but is moving to NYU Cancer Center this week. Last week Pete's PET scan was scheduled to take place at Beth Israel on Wednesday, but he got a call yesterday that the location is changed and the appointment date is Thursday (Oct 21) with a follow up visit to go over the results with Dr R on Friday.
Pete's been doing quite well. Not so for Pan, our 7 yr old IG.
You can find Pan's story on a separate page link under "Other Stuff", found on the left side of the blog page below the Blog Archive.
Pete's been doing quite well. Not so for Pan, our 7 yr old IG.
You can find Pan's story on a separate page link under "Other Stuff", found on the left side of the blog page below the Blog Archive.
Friday, October 15, 2010
Date for PET Scan Set - October 15, 2010
Pete's PET scan is scheduled for Wednesday, October 20th, one day earlier than we had thought it was going to be. Pete's feeling pretty good, though he did say that he's been experiencing a bit more discomfort in the area of his scapula, but it's not the same as before, and certainly not as intense.
It is my understanding that as the tumor cells become necrotic, the tumor sometimes swells. This may be what's happening with the largest of Pete's lung mets, the one that had been causing him so much pain before he started this intensive, high-dose ifosfomide treatment.
It is my understanding that as the tumor cells become necrotic, the tumor sometimes swells. This may be what's happening with the largest of Pete's lung mets, the one that had been causing him so much pain before he started this intensive, high-dose ifosfomide treatment.
Wednesday, October 13, 2010
Blood Work #2 Post Infusion #2 - October 13, 2010
Delays at the GW Bridge, OBX and the Holland Tunnel were mentioned on the news this morning so it naturally followed that there was a bit more traffic than usual on our drive into the city.
Pete went into the lab to have blood drawn, then into the treatment area to have vitals recorded. After that it was just a matter of waiting for the results of the blood work. Dr R said a quick "hello" as he passed by, but he was checking on patients who were in the midst of active treatment. A came in a few minutes later and talked with us, but until the blood results came in there wasn't anything much to say. She did ask Pete if he had gotten a flu shot and mentioned that they would be scheduling a PET scan 2 weeks post-Neulasta shot. The reason for that is Neulasta stimulates the bone marrow to produce white blood cells. If the scan is done too soon after the shot, the bone marrow, particularly near the ends of the bones, glows much like the tumors glow. It's best to wait until things slow down to get a more accurate read on tumor activity and not confuse it with bone marrow activity.
D was in and out several times. She brought Pete an info sheet on flu vaccine and a release to sign for the shot, returned, gave Pete the shot, and was gone again, then was back with the blood report. The news was good; the numbers are all coming up, yay! WBC is 14.0, RBC is 3.20 and hemoglobin is 10.6. Thursday, 10/21, will be 2 weeks since the Neulasta shot so she advised Pete to call L and set up an appointment for the PET scan for either that day or the next. The results of that scan and the numbers they get on the blood work that day will determine what the next treatment will be and when it will be scheduled. Translation: Pete has 8 days of "R & R" before having to return to the city.
On the ride home I mentioned to him that maybe Bruce and I will take a little road trip in the RV to check out the fall colors. He said he thought that was a great idea and that Bruce and I deserve to take a break. He's probably thinking it'll be a break for him, too, to get us out of his hair (oops, he doesn't have any!) for a couple of days.
Pete went into the lab to have blood drawn, then into the treatment area to have vitals recorded. After that it was just a matter of waiting for the results of the blood work. Dr R said a quick "hello" as he passed by, but he was checking on patients who were in the midst of active treatment. A came in a few minutes later and talked with us, but until the blood results came in there wasn't anything much to say. She did ask Pete if he had gotten a flu shot and mentioned that they would be scheduling a PET scan 2 weeks post-Neulasta shot. The reason for that is Neulasta stimulates the bone marrow to produce white blood cells. If the scan is done too soon after the shot, the bone marrow, particularly near the ends of the bones, glows much like the tumors glow. It's best to wait until things slow down to get a more accurate read on tumor activity and not confuse it with bone marrow activity.
D was in and out several times. She brought Pete an info sheet on flu vaccine and a release to sign for the shot, returned, gave Pete the shot, and was gone again, then was back with the blood report. The news was good; the numbers are all coming up, yay! WBC is 14.0, RBC is 3.20 and hemoglobin is 10.6. Thursday, 10/21, will be 2 weeks since the Neulasta shot so she advised Pete to call L and set up an appointment for the PET scan for either that day or the next. The results of that scan and the numbers they get on the blood work that day will determine what the next treatment will be and when it will be scheduled. Translation: Pete has 8 days of "R & R" before having to return to the city.
On the ride home I mentioned to him that maybe Bruce and I will take a little road trip in the RV to check out the fall colors. He said he thought that was a great idea and that Bruce and I deserve to take a break. He's probably thinking it'll be a break for him, too, to get us out of his hair (oops, he doesn't have any!) for a couple of days.
Monday, October 11, 2010
Blood Work #1 Post Infusion #2 - October 11, 2010
Pete's father drove him into the city for today's bloodwork. It was good timing because yesterday afternoon I was doing some puttering outside and tripped over a 4x4 in the garage and fell headlong into some wood, putting a nice gash in my forehead. It's about 2 1/2" long and required both interior and exterior stitches and a CT scan to make sure my grey matter was A-ok, which it was. I've got a pretty hard head in more ways than one. No headaches, but the area along the cut is swollen and hurts like heck.
This afternoon we had a bit of a fright because Bruce went out to see what Pan was barking at in the back corner of our yard and found him face to face with a raccoon that was, very fortunately, on the other side of the fence. After he grabbed Pan and brought him inside he went out again and saw the raccoon walking very oddly along the neighbor's fence until it disappeared into the thick brush and bushes. On advice of our vet, we took Pan over for a rabies booster. Better safe than sorry, especially since he'd be due for it in December anyway.
Pete came home with a WBC of 0.8, up from 0.5, so the Neulasta is doing it's thing. The RBC is down to 3.09 and hemoglobin is down to 9.7 from 3.31 and 10.7, respectively, last Thursday. He's scheduled to go in for another blood workup Wednesday. The hemoglobin is a concern because if it gets down to the critical number 9.0 or below, it will require a blood transfusion.
This afternoon we had a bit of a fright because Bruce went out to see what Pan was barking at in the back corner of our yard and found him face to face with a raccoon that was, very fortunately, on the other side of the fence. After he grabbed Pan and brought him inside he went out again and saw the raccoon walking very oddly along the neighbor's fence until it disappeared into the thick brush and bushes. On advice of our vet, we took Pan over for a rabies booster. Better safe than sorry, especially since he'd be due for it in December anyway.
Pete came home with a WBC of 0.8, up from 0.5, so the Neulasta is doing it's thing. The RBC is down to 3.09 and hemoglobin is down to 9.7 from 3.31 and 10.7, respectively, last Thursday. He's scheduled to go in for another blood workup Wednesday. The hemoglobin is a concern because if it gets down to the critical number 9.0 or below, it will require a blood transfusion.
Thursday, October 7, 2010
Day 10 of 10 - October 7, 2010
We left the house a little after 8 AM. There was very little traffic going into the city today. While on the ride in Pete put a call in to his insurance and asked if there are any restrictions/limitations on PET scans. He was told that there are none.
The blood work showed that his WBC is down from 0.7 yesterday to 0.5 today. A2 went over all the test numbers and then gave him his Neulasta shot. She left and spoke with A on the phone to find out when he should come back for his next blood workup based on today's results and when she returned she told us that as long as we were very diligent in watching for signs of fever we would not have to return until Monday.
Pete asked her if she would relay the message about his insurance being willing to pay for another PET scan and she picked up the phone right there and left that message with Dr R's receptionist.
Very little traffic on the way home and we arrived well before noon.
The blood work showed that his WBC is down from 0.7 yesterday to 0.5 today. A2 went over all the test numbers and then gave him his Neulasta shot. She left and spoke with A on the phone to find out when he should come back for his next blood workup based on today's results and when she returned she told us that as long as we were very diligent in watching for signs of fever we would not have to return until Monday.
Pete asked her if she would relay the message about his insurance being willing to pay for another PET scan and she picked up the phone right there and left that message with Dr R's receptionist.
Very little traffic on the way home and we arrived well before noon.
Wednesday, October 6, 2010
Day 9 of 10 - October 6, 2010
A typical reference range for the white blood cell count is 4.5 - 11.0. Here are how Pete's numbers went during this infusion period: 10.0, 11.4, 10.8, 7.3, 8.1, 5.0, 2.9, 1.3, 0.7. Dr R stopped in briefly today and said that we should not be surprised if tomorrow's number is "zero". We'll be heading in tomorrow morning for another blood test to check that number and to get the Neulasta shot to boost the white blood cell count back up.
Pete will be under "house arrest" until those numbers start to rebound because at these levels he is susceptible to infection. It's best if he does not have contact, even casual contact, with people who may be harboring colds, flu, or any kind of bacterial/viral infections. He also has to be extremely careful of cuts or scratches, even something as small as a paper cut. He has virtually no immunity and because of that things can very quickly spiral out of control and become life-threatening.
It was a long day. I asked Dr R when the scans might be scheduled and he said in about 2 weeks, but once again stressed that he is pretty confident that the tumors are all shrinking.
Pete will be under "house arrest" until those numbers start to rebound because at these levels he is susceptible to infection. It's best if he does not have contact, even casual contact, with people who may be harboring colds, flu, or any kind of bacterial/viral infections. He also has to be extremely careful of cuts or scratches, even something as small as a paper cut. He has virtually no immunity and because of that things can very quickly spiral out of control and become life-threatening.
It was a long day. I asked Dr R when the scans might be scheduled and he said in about 2 weeks, but once again stressed that he is pretty confident that the tumors are all shrinking.
Tuesday, October 5, 2010
Day 8 of 10 - October 5, 2010
There was quite a bit of unexplained congestion on the NJ Tpk between Exits 11 and 14 on the way in this morning but the rest of the ride in was clear and we arrived a few minutes past 10.
A short time after they left D came in and told Pete that his white blood cells appear to be tanking. She was going to have to confer with Dr R to find out if he wants to proceed with the treatment or shorten it by one day. If shortened, Pete would have to stay the full day today so he could get the 4 hr Mesna infusion and then come in tomorrow for the Neulasta shot and blood work. Pete started to grin when he heard he might be able to go home without the pump and tubing attached.
After she spoke with A and the doctor, she returned and gave him the decision. She said that she felt the numbers were still high enough to go one more day, A was hesitant and felt it should be shortened, but the decision was Dr R's and he said to continue, so Pete will be hooked up one more time.
Pete spoke with D about the difficulty he's been having getting the sodium bicarbonate down and she suggested taking "Alka-Seltzer Gold" in its stead. D2 had mentioned the same thing the other day when he first began to have problems drinking down the bicarb but we hadn't been able to locate that type of Alka-Seltzer. D explained that Alka-Selzer contains the required amount of sodium bicarbonate, but is a bit easier to "stomach". The Gold does not include an analgesic, in this case, aspirin, but it contains as much sodium bicarbonate as the 4 pills that Pete has been directed to take.
We got home sometime around 3:30. Bruce and I went right out to Costco to pick up Pete's antibiotic. He'll be taking that again for a while as a precaution because he is so susceptible to serious infection now that his white blood cells are on the decline. D predicted that they'll probably be close to zero in the next day or so, that's why it's critical to have the Neulasta shot 24 hours after the finish of chemo.
Tomorrow is the long day, then just the shot and blood work on Thursday which will take an hour or less. The doctor will give him the prescription for the scan either of those days.
Another successful blood return, yay! Shortly after we arrived Dr R and A came in to talk with Pete. Apparently they had been "Skyping" back and forth several times each day during Dr R's absence and she had been keeping him abreast of what was going on with his patients. He was right on top of what had transpired with Pete and his unintentional withdrawal.
Both he and A seemed very pleased when he examined Pete's legs and couldn't feel either of the tumors. They discussed the upcoming scan and Pete will be calling his insurance company to see if they have any restriction on another full-body PET scan. Dr R seemed to be very interested in having one done IF the insurance would cover it, otherwise, he would just order the CT scan of the chest/pelvis. As A explained, if the tumors in his lungs are shrinking and the doctor can't feel the tumors in his legs anymore, then it's a clear sign that the chemo is working.
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| Infusion Pump and Hydration Pack |
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| Infusion Pump in Case |
After she spoke with A and the doctor, she returned and gave him the decision. She said that she felt the numbers were still high enough to go one more day, A was hesitant and felt it should be shortened, but the decision was Dr R's and he said to continue, so Pete will be hooked up one more time.
Pete spoke with D about the difficulty he's been having getting the sodium bicarbonate down and she suggested taking "Alka-Seltzer Gold" in its stead. D2 had mentioned the same thing the other day when he first began to have problems drinking down the bicarb but we hadn't been able to locate that type of Alka-Seltzer. D explained that Alka-Selzer contains the required amount of sodium bicarbonate, but is a bit easier to "stomach". The Gold does not include an analgesic, in this case, aspirin, but it contains as much sodium bicarbonate as the 4 pills that Pete has been directed to take.
We got home sometime around 3:30. Bruce and I went right out to Costco to pick up Pete's antibiotic. He'll be taking that again for a while as a precaution because he is so susceptible to serious infection now that his white blood cells are on the decline. D predicted that they'll probably be close to zero in the next day or so, that's why it's critical to have the Neulasta shot 24 hours after the finish of chemo.
Tomorrow is the long day, then just the shot and blood work on Thursday which will take an hour or less. The doctor will give him the prescription for the scan either of those days.
Monday, October 4, 2010
Day 7 of 10 - October 4, 2010
The day started out rainy, fortunately just an easy rain that you could still walk a while without an umbrella and not get much more than a little damp. We finished packing the last few items, made a final sweep of the room to make certain we hadn't left anything behind, turned our keys and exit survey in on Floor 6, and headed out for the hospital.
The Lodge is just a half block from Madison Square Garden and there's a queue of taxis lined up at the ready to pick up an even longer queue of people waiting to be taken to their important destination. Even though it was a short distance to walk we had all of our luggage and bags to handle. Fortunately, Pete's large duffel had wheels, but even pulling that and carrying his laptop took their toll and he was pale and looked very shaky when we got to the end of the line. Fortunately, everything moved very quickly and we were in the cab and on our way in a matter of minutes.
D got a blood return, hooray! All the numbers are still looking good, though sodium bicarb was a little low. Pete's been having some difficulty getting and keeping the oral bicarb down, so D said that rather than having him start to get nauseous, she'd just give him a second bottle during the infusion after the first one finished.
I briefly saw Dr R in the area talking with several people, but he didn't come in to see Pete today.
Bruce arrived around 12:30, the iv finished around 1:15 and we headed out to the garage, got in the car and were home around 3. We were greeted by the dogs and though none of them are normally "lickers", both Pete and I were smothered with doggie "kisses" from Pan and Tess. Pete went into his room to lay down on his bed and Scrat immediately found a spot and snuggled right up against him.
It is so good to be home.
The Lodge is just a half block from Madison Square Garden and there's a queue of taxis lined up at the ready to pick up an even longer queue of people waiting to be taken to their important destination. Even though it was a short distance to walk we had all of our luggage and bags to handle. Fortunately, Pete's large duffel had wheels, but even pulling that and carrying his laptop took their toll and he was pale and looked very shaky when we got to the end of the line. Fortunately, everything moved very quickly and we were in the cab and on our way in a matter of minutes.
D got a blood return, hooray! All the numbers are still looking good, though sodium bicarb was a little low. Pete's been having some difficulty getting and keeping the oral bicarb down, so D said that rather than having him start to get nauseous, she'd just give him a second bottle during the infusion after the first one finished.
I briefly saw Dr R in the area talking with several people, but he didn't come in to see Pete today.
 |
| Left to Right: Pan, Tess, Scrat |
It is so good to be home.
Sunday, October 3, 2010
Day 6 of 10 (Cont'd) - October 3, 2010
We've turned the corner and things are rapidly improving. Pete is pretty much back to his normal self.
I believe that things happen for a reason.We don't always understand at the time they happen, but eventually, we find that there was a purpose or, at the very least, a lesson that we can take from it.
Pete has, from time to time in the past, been annoyed at me when I asked to accompany him to appointments or when I questioned him about his medications. I can appreciate that as an adult, having his mom shadow him and quiz him might be perceived as me not having confidence that he can take care of himself. That's not it at all.
The events of the past several days highlight exactly why I have wanted to be included in the details of his healthcare. Had I known that he was weaning himself off of the drugs and that he suddenly stopped taking them, I would have known to make certain that he continued to take them during this treatment and could very possibly have prevented the distress it caused both of us. He needs to understand that I am a partner in this whole thing so that if something happens and he is not able to properly address a situation, I can provide the backup and assistance to assure that things go as smoothly as possible. Liken it to a co-pilot, standing by, ready to step in if needed.
Earlier, I included a link to describe and explain the very real condition referred to as "chemo-brain". If someone receiving chemo, particularly at a dose as high as Pete is getting, were to engage in some type of legal contract, it would most likely not be binding, precisely because of the mental fog caused by the drugs.
I hope that he now realizes why it is so important to have someone who is kept informed of treatments, meds and all things involved with his healthcare.
I believe that things happen for a reason.We don't always understand at the time they happen, but eventually, we find that there was a purpose or, at the very least, a lesson that we can take from it.
Pete has, from time to time in the past, been annoyed at me when I asked to accompany him to appointments or when I questioned him about his medications. I can appreciate that as an adult, having his mom shadow him and quiz him might be perceived as me not having confidence that he can take care of himself. That's not it at all.
The events of the past several days highlight exactly why I have wanted to be included in the details of his healthcare. Had I known that he was weaning himself off of the drugs and that he suddenly stopped taking them, I would have known to make certain that he continued to take them during this treatment and could very possibly have prevented the distress it caused both of us. He needs to understand that I am a partner in this whole thing so that if something happens and he is not able to properly address a situation, I can provide the backup and assistance to assure that things go as smoothly as possible. Liken it to a co-pilot, standing by, ready to step in if needed.
Earlier, I included a link to describe and explain the very real condition referred to as "chemo-brain". If someone receiving chemo, particularly at a dose as high as Pete is getting, were to engage in some type of legal contract, it would most likely not be binding, precisely because of the mental fog caused by the drugs.
I hope that he now realizes why it is so important to have someone who is kept informed of treatments, meds and all things involved with his healthcare.
Day 6 of 10 - October 3, 2010
Watched a bit of TV last evening, The Green Mile and then started Catch Me If You Can but turned it off and the last time I looked at the time it was 10:10. I woke a little after 1 to Pete starting to change his sheet. Apparently I had slept through the first change, so I just told him to move to my bed and then I finished switching out the sheets on his bed and crawled in.
I had a bit of problem falling back to sleep, but once I did, that was it! No more sweats for Pete! Hooray! Well, at least not bad enough for him to wake up dripping sweat in a drenched bed.
Tonight will be our last at the Lodge. Our scheduled sign out is tomorrow by noon. When we get back from today's treatment we'll work out the logistics for our exit.
I had a bit of problem falling back to sleep, but once I did, that was it! No more sweats for Pete! Hooray! Well, at least not bad enough for him to wake up dripping sweat in a drenched bed.
Tonight will be our last at the Lodge. Our scheduled sign out is tomorrow by noon. When we get back from today's treatment we'll work out the logistics for our exit.
Saturday, October 2, 2010
Day 5 of 10 - October 2, 2010
We were out onto the street early, hailed a cab and arrived at Beth Israel ahead of schedule. Nothing could be started until a doctor arrived at 10. When D2 came in to speak with us she said that she had checked with the pharmacist about the withdrawal issue and he told her that Pete may still experience some again tonight but that the last night and the night before would most likely have been the worst. I sure do hope he's right.
Pete was much more alert today and his color was back to normal. When I asked if he felt like having tea and maybe even some graham crackers (there are "snack centers" located throughout the building), he amazingly not only said "yes", but also that he might like soup for lunch.
The doctor was leaving just as I returned with herbal tea for each of us, a package of graham crackers, a Nuti-grain bar and a single serve container of Cheerios. He had already eaten the banana that I had picked up for him when I went out to get my breakfast and coffee before we left the Lodge. D2 was already in the room hooking up his iv. He opened the Cheerios and started snacking on them almost immediately. Since he was awake and had started watching a movie, I decided it was a good time to go for a walk and check out the area.
When I returned, Pete was ready for lunch, so it was off to Hale and Hearty for soup and bread: White Bean and Spinach with a thick slice of sour dough bread for Pete; Tomato and Eggplant with a thick slice of whole grain bread for me. We both finished our bread and about half the container of soup, putting the remainder into the refrigerator in the "snack room" for later.
By the time the iv drip was finished Pete was feeling well enough to start walking back to the Lodge. Beth Israel is on 15th Street, mid-way between 8th and 9th Avenues so we walked toward 6th Avenue which heads uptown toward Hope Lodge on 32nd Street between 6th and 7th Avenues. We turned onto 6th, but only went about a block when Pete turned quite pale and said that we needed to take a cab, so that's what we did. We had only gotten to 21st Street when traffic literally slowed to a crawl. Three more blocks and 6th Ave was closed to traffic. By then it was getting really warm and stuffy in the cab so Pete and I decided to exit. The time we spent sitting in the taxi was enough to allow Pete to recover, so we walked the rest of the way to the Lodge at an easy pace.
We have no idea what was happening along 6th Avenue, but as we turned onto 15th Avenue we could hear a band playing farther up 6th. Pete was really wiped out by the walk, so we just headed up to the room. I knew I had plenty of sheets to wash and dry before we settled in for the night, just in case we need them again.
Pete was much more alert today and his color was back to normal. When I asked if he felt like having tea and maybe even some graham crackers (there are "snack centers" located throughout the building), he amazingly not only said "yes", but also that he might like soup for lunch.
The doctor was leaving just as I returned with herbal tea for each of us, a package of graham crackers, a Nuti-grain bar and a single serve container of Cheerios. He had already eaten the banana that I had picked up for him when I went out to get my breakfast and coffee before we left the Lodge. D2 was already in the room hooking up his iv. He opened the Cheerios and started snacking on them almost immediately. Since he was awake and had started watching a movie, I decided it was a good time to go for a walk and check out the area.
When I returned, Pete was ready for lunch, so it was off to Hale and Hearty for soup and bread: White Bean and Spinach with a thick slice of sour dough bread for Pete; Tomato and Eggplant with a thick slice of whole grain bread for me. We both finished our bread and about half the container of soup, putting the remainder into the refrigerator in the "snack room" for later.
By the time the iv drip was finished Pete was feeling well enough to start walking back to the Lodge. Beth Israel is on 15th Street, mid-way between 8th and 9th Avenues so we walked toward 6th Avenue which heads uptown toward Hope Lodge on 32nd Street between 6th and 7th Avenues. We turned onto 6th, but only went about a block when Pete turned quite pale and said that we needed to take a cab, so that's what we did. We had only gotten to 21st Street when traffic literally slowed to a crawl. Three more blocks and 6th Ave was closed to traffic. By then it was getting really warm and stuffy in the cab so Pete and I decided to exit. The time we spent sitting in the taxi was enough to allow Pete to recover, so we walked the rest of the way to the Lodge at an easy pace.
We have no idea what was happening along 6th Avenue, but as we turned onto 15th Avenue we could hear a band playing farther up 6th. Pete was really wiped out by the walk, so we just headed up to the room. I knew I had plenty of sheets to wash and dry before we settled in for the night, just in case we need them again.
Close of Day 4 Leading Into Day 5
First sheet change came around 9 PM. I must have really been exhausted because I fell asleep and woke to Pete half way through making another change a little after 2 AM. He told me that he had already made two changes that I had slept through, so I don't know what time those took place. I told him to just get into my bed and I'd finish putting the dry sheet on it and use that bed. I looked around the room and there were sheets hanging from doors, draped over the TV cabinet, one over the floor lamp and pillows lined up on the ledge above the air conditioner/heater vent. I couldn't seem to fall back to sleep and watched the minutes on the clock change slowly. The last I remember it was 3:32.
He made it through until 4:37 and again we played musical beds. This time, maybe because he had gone a bit longer, when I climbed into the bed it felt damp to me, whereas other times it hadn't. I tried to relax on the chair/ottoman combination, but since I am very often up and about around 5:30 on a regular day, when 5 rolled around I just gave up, got up and showered.
Last evening I had taken a walk around the block to check out the "neighborhood" and noted that there is a Bank of America on one of the opposite corners. I'm getting short on cash at this point so it's time to take a trip to the ATM to restock my wallet.
He made it through until 4:37 and again we played musical beds. This time, maybe because he had gone a bit longer, when I climbed into the bed it felt damp to me, whereas other times it hadn't. I tried to relax on the chair/ottoman combination, but since I am very often up and about around 5:30 on a regular day, when 5 rolled around I just gave up, got up and showered.
Last evening I had taken a walk around the block to check out the "neighborhood" and noted that there is a Bank of America on one of the opposite corners. I'm getting short on cash at this point so it's time to take a trip to the ATM to restock my wallet.
Friday, October 1, 2010
Sweats Explained? - October 1, 2010 (con't)
Pete seemed to be improving a bit, his color was much better and when he was awake, he seemed much more aware rather than being in a fog as he was the past two days. He did get a second bolus of iv fluid so Bruce left before the iv was finished so he could avoid the heavy rush hour in the rain.
After he was gone, Pete just happened to mention that he had not been taking some of his medications. I know that he had taken the bicarbonate of soda and potassium on schedule, and I had asked him about other meds, but he had been telling me that he was taking care of everything. It turns out that "chemo-brain", may be the culprit. Remember that he had been taking oxycontin for the pain in the area of his scapula. His pain has been slowly but steadily decreasing and he had just begun weaning himself off of the drug, but he still had a way to go. He took the pills Monday but didn't take any since then. After I found this out and he and I discussed the possibility that the chills and sweats may have been withdrawal symptoms I went out to share this with D2. The minute I explained this to her she responded in the affirmative and said that she was very relieved to have this information and would share it with A immediately.
A short time later Pete's iv was finished so she came in to hook him up to his pump and another bolus of iv fluid for overnight. She told us that last night was most likely the worst of the withdrawal, that he may experience some symptoms tonight, but that they should be less severe.
We left Beth Israel, walked to 8th Avenue, hailed a cab (we're getting pretty good at it), and are relaxing at the Lodge now. I'm hoping Pete will feel like having me go out and pick up something for him to eat in a little while.
We're prepared for any amount of sweat tonight. Bruce brought 4 sets of bedding and a couple of blankets. Hopefully, now that we have them, we won't need them. Isn't that the way these things usually go?
After he was gone, Pete just happened to mention that he had not been taking some of his medications. I know that he had taken the bicarbonate of soda and potassium on schedule, and I had asked him about other meds, but he had been telling me that he was taking care of everything. It turns out that "chemo-brain", may be the culprit. Remember that he had been taking oxycontin for the pain in the area of his scapula. His pain has been slowly but steadily decreasing and he had just begun weaning himself off of the drug, but he still had a way to go. He took the pills Monday but didn't take any since then. After I found this out and he and I discussed the possibility that the chills and sweats may have been withdrawal symptoms I went out to share this with D2. The minute I explained this to her she responded in the affirmative and said that she was very relieved to have this information and would share it with A immediately.
A short time later Pete's iv was finished so she came in to hook him up to his pump and another bolus of iv fluid for overnight. She told us that last night was most likely the worst of the withdrawal, that he may experience some symptoms tonight, but that they should be less severe.
We left Beth Israel, walked to 8th Avenue, hailed a cab (we're getting pretty good at it), and are relaxing at the Lodge now. I'm hoping Pete will feel like having me go out and pick up something for him to eat in a little while.
We're prepared for any amount of sweat tonight. Bruce brought 4 sets of bedding and a couple of blankets. Hopefully, now that we have them, we won't need them. Isn't that the way these things usually go?
Day 4 of 10 - October 1, 2010
After Pete ate a banana for breakfast we took a taxi here and arrived around 9:30. It was just raining lightly but it's certainly not as warm and muggy as it had been the past couple of days.
D is off today, so D2 is his nurse. Of course there was no blood return again, so she had to draw the blood from his arm. A came in a short time after and was asking about whether he had a fever through the night to account for the chills and sweats, but it was 98.8 when we had taken it. Though there seems to be no fever she is having more blood drawn for a culture to look for infection of some sort. Since his weight is down again, despite the iv fluid they sent home with him, he'll be staying longer today because they will be giving him a second bag of iv fluid and also sending him out with an additional bag. She told him that she wants him to drink at least 2 bottles of water each day and pointed to the large bottle of water sitting next to his bed. I told her that I keep trying to encourage him to drink but he just is not following through.
I called Bruce this morning before I knew all of this. Right now, he's driving in and bringing extra bed sheets and a few other things. When I spoke with him I thought that we'd be finished at the normal time, between 1 and 2 and he'd be able to drive us back to Hope Lodge, but we'll have to decide whether that's how we'll work it seeing as Pete probably won't be leaving now until 5 or so.
I talked with Pete this morning while he was eating his banana about requesting an extension of our stay at Hope Lodge. I know how much he wants to be home, I do, too. But if the next several nights are going to be anything like the last two or if it winds up that he does have some kind of infection, going home and trying to commute are not going to be the best thing to do.
More later.
D is off today, so D2 is his nurse. Of course there was no blood return again, so she had to draw the blood from his arm. A came in a short time after and was asking about whether he had a fever through the night to account for the chills and sweats, but it was 98.8 when we had taken it. Though there seems to be no fever she is having more blood drawn for a culture to look for infection of some sort. Since his weight is down again, despite the iv fluid they sent home with him, he'll be staying longer today because they will be giving him a second bag of iv fluid and also sending him out with an additional bag. She told him that she wants him to drink at least 2 bottles of water each day and pointed to the large bottle of water sitting next to his bed. I told her that I keep trying to encourage him to drink but he just is not following through.
I called Bruce this morning before I knew all of this. Right now, he's driving in and bringing extra bed sheets and a few other things. When I spoke with him I thought that we'd be finished at the normal time, between 1 and 2 and he'd be able to drive us back to Hope Lodge, but we'll have to decide whether that's how we'll work it seeing as Pete probably won't be leaving now until 5 or so.
I talked with Pete this morning while he was eating his banana about requesting an extension of our stay at Hope Lodge. I know how much he wants to be home, I do, too. But if the next several nights are going to be anything like the last two or if it winds up that he does have some kind of infection, going home and trying to commute are not going to be the best thing to do.
More later.
Day 3 Ends, Day 4 Emerges
With Pete hooked up to the infusion pump and iv fluids we left Beth Israel and started off walking but about a third of the way back to the Lodge Pete suggested that we hail a cab, and that we did. Pete collapsed on the bed as soon as we were in our room and I went back down to see if I could get an extra set of bedclothes. I was told that they had no spares and I would have to purchase a set from one of the surrounding stores
That would have to be put on hold because I had to take care of the laundry, so back upstairs. I gathered the sheets, pillowcases, Pete's t-shirts and the bed pad and went down the hall to the laundry. Both washers and dryers were in use so I left a note on my pile that I would be checking back shortly. The machines had timers on them and all showed over 30 minutes so I decided that I would see if I could locate a store that had sheets.
The Lodge is directly across the street from the Manhattan Mall which houses a JC Penny's. I found a set of single bed linens on sale for $12.99 and was back at the Lodge before and of the washing machines were free. There was a young woman in the laundry room and we began to chat.
I learned her name is Janice and she's from Texas, 34, married and has a son, about a year and a half old, back home being cared for by her parents. She was diagnosed with a cancer early in her pregnancy and was originally being treated a MD Anderson in Houston. However, she changed to MSKCC when she learned that there is a doctor at that cancer center who has been pioneering a special surgery related to her particular cancer, one that involves her liver.
We talked for some time and my heart just broke for this vibrant young wife and mother who has been travelling this difficult road. To look at her you would never suspect she is going through this horror. I recall so often seeing cancer patients portrayed looking like victims of the Holocaust, thin, frail, ashen with deep sunken eyes, and I have seen some who match my mental picture. But many more are like Pete and Janice, so close to looking "normal" that you would never guess that the carry this disease inside.
I felt confident as I put both beds back together and had my spare set of sheets on hand that the night would go smoothly. Pete had been sleeping off and on since we had gotten home. Once I had one bed set he moved into that and I put the other together and put on the TV.
A little after 9 Pete was up. His shirt was drenched as were the sheets, so I opened the new set and remade his bed and hung the damp sheets. I had rigged something up using the closet doors and hangers that would allow them to air dry. He changed his shirt, which I hung on a hanger, and went back to bed.
Around 11 he was up again, and this time went into the shower. I took the bottom sheet off of my bed since the first sheet was still damp and hung the latest sheet from the other closet doors. At 1:10 he was up again. By this time he had given up on wearing a t-shirt and was sitting up on the edge of the bed, his body glistening with sweat, beads running down his face and torso. The first sheet was usable, so on it went and the latest got hung to dry.
About 4:30 we went though the routine again. I couldn't fall back to sleep so decided it was as good a time as any to update the blog, so here I am. Pete hasn't eaten anything since that banana yesterday morning. The only other food he's had was a bagel as we were driving in on Wednesday and a chocolate chip cookie around noon that day. I bought a cinnamon-raisin bagel, one of his favorites, and some cream cheese at Chelsea Market yesterday with the hope that he'd at least eat that. It went into the refrigerator (absolutely no food or drink, other than water, allowed in the rooms here) as soon as we got back and I kept offering it to him throughout the afternoon and evening, but he refused each time. Hopefully, he'll eat it for breakfast this morning.
That would have to be put on hold because I had to take care of the laundry, so back upstairs. I gathered the sheets, pillowcases, Pete's t-shirts and the bed pad and went down the hall to the laundry. Both washers and dryers were in use so I left a note on my pile that I would be checking back shortly. The machines had timers on them and all showed over 30 minutes so I decided that I would see if I could locate a store that had sheets.
The Lodge is directly across the street from the Manhattan Mall which houses a JC Penny's. I found a set of single bed linens on sale for $12.99 and was back at the Lodge before and of the washing machines were free. There was a young woman in the laundry room and we began to chat.
I learned her name is Janice and she's from Texas, 34, married and has a son, about a year and a half old, back home being cared for by her parents. She was diagnosed with a cancer early in her pregnancy and was originally being treated a MD Anderson in Houston. However, she changed to MSKCC when she learned that there is a doctor at that cancer center who has been pioneering a special surgery related to her particular cancer, one that involves her liver.
We talked for some time and my heart just broke for this vibrant young wife and mother who has been travelling this difficult road. To look at her you would never suspect she is going through this horror. I recall so often seeing cancer patients portrayed looking like victims of the Holocaust, thin, frail, ashen with deep sunken eyes, and I have seen some who match my mental picture. But many more are like Pete and Janice, so close to looking "normal" that you would never guess that the carry this disease inside.
I felt confident as I put both beds back together and had my spare set of sheets on hand that the night would go smoothly. Pete had been sleeping off and on since we had gotten home. Once I had one bed set he moved into that and I put the other together and put on the TV.
A little after 9 Pete was up. His shirt was drenched as were the sheets, so I opened the new set and remade his bed and hung the damp sheets. I had rigged something up using the closet doors and hangers that would allow them to air dry. He changed his shirt, which I hung on a hanger, and went back to bed.
Around 11 he was up again, and this time went into the shower. I took the bottom sheet off of my bed since the first sheet was still damp and hung the latest sheet from the other closet doors. At 1:10 he was up again. By this time he had given up on wearing a t-shirt and was sitting up on the edge of the bed, his body glistening with sweat, beads running down his face and torso. The first sheet was usable, so on it went and the latest got hung to dry.
About 4:30 we went though the routine again. I couldn't fall back to sleep so decided it was as good a time as any to update the blog, so here I am. Pete hasn't eaten anything since that banana yesterday morning. The only other food he's had was a bagel as we were driving in on Wednesday and a chocolate chip cookie around noon that day. I bought a cinnamon-raisin bagel, one of his favorites, and some cream cheese at Chelsea Market yesterday with the hope that he'd at least eat that. It went into the refrigerator (absolutely no food or drink, other than water, allowed in the rooms here) as soon as we got back and I kept offering it to him throughout the afternoon and evening, but he refused each time. Hopefully, he'll eat it for breakfast this morning.
Day 3 of 10 - September 30, 2010
I couldn't fall asleep last night and around midnight Pete got up, drenched in sweat. He went to change his t-shirt and when he did I got up and felt his bed sheets. They were soaked, both top and bottom, as were the pillowcases. I took all the bedclothes off and had him get into my bed (there are 2 twin beds in the room). I walked down to the laundry room (there's one on every floor, free) but it is locked between 8:30 PM and 8:30 AM. The best I could do was to hang the pillow cases and his shirt in the closet (thank goodness there were some hangers with clips!), one sheet was suspended between the corners of the closet doors and the other thrown over the shower door.
There's a chair with a ottoman in the corner, so I grabbed a dry pillow and a small throw blanket that was on the chair and played solitaire on my cell phone to after 3. I put the mattress pad, which was now fairly dry, back on the bed and fell asleep there. Pete continued to sweat, but not to the extent that he had earlier. I was really concerned about dehydration because of the profuse sweating and also because he really hadn't been drinking his water, so I tried to periodically wake him and get him to drink but I wasn't very successful.
I had gotten up and showered a little after 5 and finally woke him around 8. He showered and we went to the kitchen, which is directly across the hall from our door, and he had a banana for breakfast. I kept trying to get him to decide how we were going to get back to Beth Israel - bus, subway or cab - but he finally said that we'd walk. It wasn't raining at the time and I really think that he should be doing some physical activity so we left the Lodge around 9. We walked at a slow but steady pace and arrived at 9:30. That walk really wiped Pete out, he was sweating and his shirt was drenched.
It may not have been a bad idea to walk because when D tried for the blood return, which she hadn't had any success with either of the past 2 days, the blood just poured out. When we told her that we had walked here she said that would account for his slightly elevated blood pressure and may actually have helped get a good blood return.
His iv is almost finished. A had stopped by earlier with concerns about another significant weight loss, though she didn't say exactly how much. Pete was asleep so I told her about his night sweats and the fact that he hadn't drunk as much as I felt he should. She said that they would be sending him home with a bolus of iv fluid, just as they had during the last round.
I'm not sure how we'll be getting back to Hope Lodge this afternoon. It will be up to Pete to decide.
There's a chair with a ottoman in the corner, so I grabbed a dry pillow and a small throw blanket that was on the chair and played solitaire on my cell phone to after 3. I put the mattress pad, which was now fairly dry, back on the bed and fell asleep there. Pete continued to sweat, but not to the extent that he had earlier. I was really concerned about dehydration because of the profuse sweating and also because he really hadn't been drinking his water, so I tried to periodically wake him and get him to drink but I wasn't very successful.
I had gotten up and showered a little after 5 and finally woke him around 8. He showered and we went to the kitchen, which is directly across the hall from our door, and he had a banana for breakfast. I kept trying to get him to decide how we were going to get back to Beth Israel - bus, subway or cab - but he finally said that we'd walk. It wasn't raining at the time and I really think that he should be doing some physical activity so we left the Lodge around 9. We walked at a slow but steady pace and arrived at 9:30. That walk really wiped Pete out, he was sweating and his shirt was drenched.
It may not have been a bad idea to walk because when D tried for the blood return, which she hadn't had any success with either of the past 2 days, the blood just poured out. When we told her that we had walked here she said that would account for his slightly elevated blood pressure and may actually have helped get a good blood return.
His iv is almost finished. A had stopped by earlier with concerns about another significant weight loss, though she didn't say exactly how much. Pete was asleep so I told her about his night sweats and the fact that he hadn't drunk as much as I felt he should. She said that they would be sending him home with a bolus of iv fluid, just as they had during the last round.
I'm not sure how we'll be getting back to Hope Lodge this afternoon. It will be up to Pete to decide.
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