This is our favorite local commercial. We are not sure exactly what they are promoting since we are so distracted by all that is going on and the catchy little ditty. They have done one thing right I guess since we have been here a week and already have the phone number memorized. It is kinda like Empire Today....who doesn't know that phone number?! "588-2 3hundred...Empire!"
http://www.youtube.com/watch?v=9EVxI0uGzeY
Thursday, April 30, 2009
Humming
I'll keep this one short but it was funny. Jamie wrote about the difficulty they were having with the catheter and drawing the blood. I started getting dizzy so they laid me back, (but by the end of the ordeal they had me sitting upright) then the nurse ask me to start humming? :o) Yep Humming. I started humming "Swing low, sweet chariot..." Jamie was behind her laughing as I was rolling my eyes. This wasn't working so she asked me to cough, which I did. Then she asked me to cough deeper? Deeper? How do I cough deeper? Jamie again had a smile on her face. Lastly she asked me to roll my head like I was massaging my neck. None of it worked, finally I went down to the chemotherapy area and the technician there got the catheter to work just fine. hehe. I am now taking requests for which song anyone would like hummed the next time it happens. Jamie will verify that I properly hum the tune.
I'm Back
Well,
It has been a couple of days since I posted. I haven't been feeling all that great. I guess that means the chemo is doing what it is suppose to. I did get admitted into the hospital last night around 9pm. That was after spending 5 hours in "Urgent Care." I am sad to say that there wasn't anything urgent about the care that I received. In speaking with other individuals they said that you should see how other ER's operate and how long you have to wait here in the city. I had Mr. Stein behind me in line (all the rooms where full so our beds were pushed up against the wall waiting to be taken up to a room). Mr. Stein would ask his son Ricky, "...where's your mother?" Then Ricky would go out into the waiting area to sit with his Mom only to have Mr. Stein starting calling for him, "....Ricky, Ricky, Ricky." The sight was something I would only imagine out of a TV show like Grey's Anatomy or ER, except that the people were all moving a lot more slowly...haha. At least now we know, when we have to unexpectedly come to the hospital. Once you get up to the floors the nurses are very good. I've got a guy who's interning and a Mets fan and he is always good to talk to. We were talking about all the baseball stadiums, he was telling me he went to the Mets game yesterday. We had wanted to go if I felt 'OK' but that didn't happen, I watched the game on TV in my bed. He also informed me that the Mets blew their 3-2 lead in the 8th and lost 4-3. I think he is getting to do some things with me because I'm somewhat patient with the nurses. I had a roommate last night, "Nat" I believe short for Natapoly....No not Natty Light. Poor Nat sounded like he was hacking up a lung. This morning they have placed me into an isolation room all by myself just to make sure that I do not contract any infections because my white blood cell counts are so low. I can honestly say I do feel ALOT better today. I got to take a shower and they changed the dressing around the catheter. There has been some drama in the room next to me. From what I understand the woman in the room is demanding she be moved to an individual room. I can't see too much of it but can see that there have been a lot of people going in and out of that room. Well that's all for me right now. Talk to you soon
It has been a couple of days since I posted. I haven't been feeling all that great. I guess that means the chemo is doing what it is suppose to. I did get admitted into the hospital last night around 9pm. That was after spending 5 hours in "Urgent Care." I am sad to say that there wasn't anything urgent about the care that I received. In speaking with other individuals they said that you should see how other ER's operate and how long you have to wait here in the city. I had Mr. Stein behind me in line (all the rooms where full so our beds were pushed up against the wall waiting to be taken up to a room). Mr. Stein would ask his son Ricky, "...where's your mother?" Then Ricky would go out into the waiting area to sit with his Mom only to have Mr. Stein starting calling for him, "....Ricky, Ricky, Ricky." The sight was something I would only imagine out of a TV show like Grey's Anatomy or ER, except that the people were all moving a lot more slowly...haha. At least now we know, when we have to unexpectedly come to the hospital. Once you get up to the floors the nurses are very good. I've got a guy who's interning and a Mets fan and he is always good to talk to. We were talking about all the baseball stadiums, he was telling me he went to the Mets game yesterday. We had wanted to go if I felt 'OK' but that didn't happen, I watched the game on TV in my bed. He also informed me that the Mets blew their 3-2 lead in the 8th and lost 4-3. I think he is getting to do some things with me because I'm somewhat patient with the nurses. I had a roommate last night, "Nat" I believe short for Natapoly....No not Natty Light. Poor Nat sounded like he was hacking up a lung. This morning they have placed me into an isolation room all by myself just to make sure that I do not contract any infections because my white blood cell counts are so low. I can honestly say I do feel ALOT better today. I got to take a shower and they changed the dressing around the catheter. There has been some drama in the room next to me. From what I understand the woman in the room is demanding she be moved to an individual room. I can't see too much of it but can see that there have been a lot of people going in and out of that room. Well that's all for me right now. Talk to you soon
Wednesday, April 29, 2009
Another bad evening...
I won't tell you much about the evening because John is pretty ticked off about it and I know he wants to do a little ranting on the old blog here. I will let him take his frustration out here since it is probably safer than somewhere else.
John was admitted back to the hospital tonight after a fever today. His white cell count is super low and they will be giving him double anti-biotics to kick whatever's butt that is wearing him down. Once his count is back up he can come back to the Lodge. I feel so bad for him since he HATES staying overnight at the hospital. Unfortunately his roommate is hacking up part of his lung so I am sure that will keep John from a good night's rest.
As long as his count gets back to where it should be then as scheduled this coming Monday he will go in to have his stem cells harvested. Fingers crossed and many prayers that they get the amount they need and won't have to do it a second round.
John was admitted back to the hospital tonight after a fever today. His white cell count is super low and they will be giving him double anti-biotics to kick whatever's butt that is wearing him down. Once his count is back up he can come back to the Lodge. I feel so bad for him since he HATES staying overnight at the hospital. Unfortunately his roommate is hacking up part of his lung so I am sure that will keep John from a good night's rest.
As long as his count gets back to where it should be then as scheduled this coming Monday he will go in to have his stem cells harvested. Fingers crossed and many prayers that they get the amount they need and won't have to do it a second round.
Worst night so far...
It seems as though the chemo has hit John like a ton of bricks. We went yesterday to meet with a doctor and for them to take some blood. Unfortunately the nurse that is supposed to be a pro with the catheter did not do so well. John is not good with the sight of blood to begin with and she seemed to be taking forever.
When they first access the catheter they push saline into it then pull it back out to make sure they are getting "return", which is blood coming back into the tube with the saline. Well even though she was taking forever it all seemed to be working. John had to be laid back since he was getting dizzy....all because she was taking FOREVER. She finishes up then decides she needs a little more blood, only this time she can't seem to get any "return". She uses the other (red) tube and it seems to work fine which makes her think he may have a little blockage in that (blue) tube. We are sent down to the chemo floor for them to use a medication to break up any blockage. Surprise!!!!! The nurse downstairs has no problem getting "return" from the "blocked" (blue) tube. Well that is good news because now we don't have to sit there for an hour while this drug does it's thing.
Went to lunch, he was achy but fine. Back at the room he napped, ate some dinner and then pretty much laid around. He was up and down most of the night. He was achy and cold then hot. The way this AC works in the room it is very hard to regulate your own temperature. It is either blasting or off. He barely slept last night and this morning the nausea hit like a Mack truck and it all came out like a freight train.
He took some anti-nausea medication from his first round of chemo and now he is sleeping. I hope he can sleep for at least an hour. I will be going soon to get him more meds and a better pillow since the ones they have here are pretty worthless and flat. It will be a busy day for me but a down day for John. I will do whatever he needs to be comfortable in this horrible time.
When they first access the catheter they push saline into it then pull it back out to make sure they are getting "return", which is blood coming back into the tube with the saline. Well even though she was taking forever it all seemed to be working. John had to be laid back since he was getting dizzy....all because she was taking FOREVER. She finishes up then decides she needs a little more blood, only this time she can't seem to get any "return". She uses the other (red) tube and it seems to work fine which makes her think he may have a little blockage in that (blue) tube. We are sent down to the chemo floor for them to use a medication to break up any blockage. Surprise!!!!! The nurse downstairs has no problem getting "return" from the "blocked" (blue) tube. Well that is good news because now we don't have to sit there for an hour while this drug does it's thing.
Went to lunch, he was achy but fine. Back at the room he napped, ate some dinner and then pretty much laid around. He was up and down most of the night. He was achy and cold then hot. The way this AC works in the room it is very hard to regulate your own temperature. It is either blasting or off. He barely slept last night and this morning the nausea hit like a Mack truck and it all came out like a freight train.
He took some anti-nausea medication from his first round of chemo and now he is sleeping. I hope he can sleep for at least an hour. I will be going soon to get him more meds and a better pillow since the ones they have here are pretty worthless and flat. It will be a busy day for me but a down day for John. I will do whatever he needs to be comfortable in this horrible time.
Monday, April 27, 2009
Night comes after a hard day...
John is sleeping but I can hear him moving a lot.....a sign I will assume is from his aching legs. He even napped today which is not like him at all. When John naps that is a sure sign he is not feeling well......or he is hungover.
Of course I feel horrible watching him go through the chemo and seeing the affects it has on him, but seeing the shots and the pills he has to take to get through the treatment can be just as bad.
As he told you below he has 5 shots to give himself every day. Then come all the pills.....he has potassium pills, thyroid pills and as of Wednesday he has to start taking anti-biotics. I am assuming this is to help fight off the fever that he will eventually get.
He is being very strong so far and I hope he can carry on like this throughout it all. We know it will only get harder and I know that is when I will need to be stronger for him. This is a test of our patience, strength and hope.
Thank you all for your supportive words and love. It truly does help get through each day.
Of course I feel horrible watching him go through the chemo and seeing the affects it has on him, but seeing the shots and the pills he has to take to get through the treatment can be just as bad.
As he told you below he has 5 shots to give himself every day. Then come all the pills.....he has potassium pills, thyroid pills and as of Wednesday he has to start taking anti-biotics. I am assuming this is to help fight off the fever that he will eventually get.
He is being very strong so far and I hope he can carry on like this throughout it all. We know it will only get harder and I know that is when I will need to be stronger for him. This is a test of our patience, strength and hope.
Thank you all for your supportive words and love. It truly does help get through each day.
Oofta!
Well, we are both back at Rm#1107 at the Hope Lodge. I was let out of the hospital around 6pm last night. They gave us a Santa Claus-sized bag of medical supplies to take home with us. They gave us kits for changing the dressing of where the catheter sits and gave Jamie plenty of gloves to handle everything. They also gave us patches to cover the catheter site so that I can keep it dry while showering. I got some meds to take as well, I was given Neupogen shots which help to bring back my White Blood cells. I received these shots when I went thru chemotherapy the first time. This time though, I am giving myself the shots and I have to give myself 3 shots each day for a week. I am getting to be a pro at giving shots, I give myself 5 shots a day right now, I think I may have a calling after this is all said and done.
It is great to be out of the hospital. Waking up today I am beginning to feel the effects of the cocktails which I had drip into me over the weekend. The drug of choice over the weekend was Ifosfamide. I feel quite achy today, primarily in my legs. I have spent a lot of today laying on the bed or just sitting in a chair. I guess I would compare it to how my legs feel after running a half-marathon....like jello. It doesn't hurt they just feel exhausted and ache.
Jamie and I spent some time after lunch reading outside on the deck on the 6th floor. We got our first piece of mail today, which was really cool! It was a very cool DVD from all of my friends back in Kansas City wishing us well and sending us their words of encouragement. THANKS!!! It was very cool to see everybody.
Gotta go across the hall, Jamie's baking chicken tonight for dinner and its ready.
It is great to be out of the hospital. Waking up today I am beginning to feel the effects of the cocktails which I had drip into me over the weekend. The drug of choice over the weekend was Ifosfamide. I feel quite achy today, primarily in my legs. I have spent a lot of today laying on the bed or just sitting in a chair. I guess I would compare it to how my legs feel after running a half-marathon....like jello. It doesn't hurt they just feel exhausted and ache.
Jamie and I spent some time after lunch reading outside on the deck on the 6th floor. We got our first piece of mail today, which was really cool! It was a very cool DVD from all of my friends back in Kansas City wishing us well and sending us their words of encouragement. THANKS!!! It was very cool to see everybody.
Gotta go across the hall, Jamie's baking chicken tonight for dinner and its ready.
Saturday, April 25, 2009
Night 1- WELL....
Jan, thanks for the post. Keep it going over there in the Dealer Credit world it is a very busy time with all that is happening with our company these days. To answer your post I won’t need my stomach waxed very soon, I will either have it ripped off by the surgical tape they use or I will just lose the hair all together. I suspect I will be looking like Dr. Evil’s cat in the Austin Powers Movies here very soon.
I do remember why I don’t like spending time in the hospital. The time that individuals normally sleep, the night, is when the nurses have the most time to check up on you. They have an uncanny way of waking you just as you are falling asleep. Here is how my late night went:
10:00pm Went down to Nick’s room (the patient receiving the treatment that I am to see how the first part of the high dose chemo was treating him)
10:30pm My first bag of chemo was empty and I needed to head back to my room to get my second back of chemo (Ifosfamide).
11:00pm Ifosfamide hung.
11:30pm Called my brother and his wife in Spokane, WA who must have wondered why I was calling so late, I explained that the Ifosfamide would be dripping for another hour and a half.
11:34pm Got to take pleasure in listening to my roommate Martin who is a Yankees fan grumble over Marino Riviera blowing a save with a 2-out hr surrendered to Jason Bay of the Red Sox in the bottom of the 9th and to hear him groan more when they blew it in the 11th Inning. (You either love the Yankees or hate them…I hate them. Sorry Dave Dichiara).
1:00 am Ifosfamide drip is empty and my machine starts beeping, I had started sleeping and this woke me up.
3:15am My roommates machine starts beeping, being I’m up they opt to take my vital signs.
4:23am The nurse came to take labs from my roommate.
4:41am An ambulance came to the hospital with it sirens blaring.
5:07am The nurses came in to take more vital signs, I gave up hope at this point of falling back to sleep and began playing the Nintendo DS, an awesome purchase Jamie made before coming up here. I tried a new game Phoenix 13 which I sucked at.
It is amazing how much you have to urinate when you are receiving fluids 24/7. I filled (4) 32 oz containers since I’ve been here which isn’t even a day.
I am looking forward to my breakfast this morning, I don’t know if I’m going to have an omelet or pancakes….hmmmmm maybe both. Hehe
This place really does compete with some of the great breakfast spots: IHOP, Perkins, Denny’s (Dirty Denny’s if you’re in Durango, CO), or Bob’s Diner (A shout out to all of my Kansas State peeps, maybe their food tasted so good because it was beer induced:o). Its suppose to be in the 80’s here today, nothing better than spending it in a hospital room. They do have an observatory deck on the 15th floor which we will spend some time out there today.
I do remember why I don’t like spending time in the hospital. The time that individuals normally sleep, the night, is when the nurses have the most time to check up on you. They have an uncanny way of waking you just as you are falling asleep. Here is how my late night went:
10:00pm Went down to Nick’s room (the patient receiving the treatment that I am to see how the first part of the high dose chemo was treating him)
10:30pm My first bag of chemo was empty and I needed to head back to my room to get my second back of chemo (Ifosfamide).
11:00pm Ifosfamide hung.
11:30pm Called my brother and his wife in Spokane, WA who must have wondered why I was calling so late, I explained that the Ifosfamide would be dripping for another hour and a half.
11:34pm Got to take pleasure in listening to my roommate Martin who is a Yankees fan grumble over Marino Riviera blowing a save with a 2-out hr surrendered to Jason Bay of the Red Sox in the bottom of the 9th and to hear him groan more when they blew it in the 11th Inning. (You either love the Yankees or hate them…I hate them. Sorry Dave Dichiara).
1:00 am Ifosfamide drip is empty and my machine starts beeping, I had started sleeping and this woke me up.
3:15am My roommates machine starts beeping, being I’m up they opt to take my vital signs.
4:23am The nurse came to take labs from my roommate.
4:41am An ambulance came to the hospital with it sirens blaring.
5:07am The nurses came in to take more vital signs, I gave up hope at this point of falling back to sleep and began playing the Nintendo DS, an awesome purchase Jamie made before coming up here. I tried a new game Phoenix 13 which I sucked at.
It is amazing how much you have to urinate when you are receiving fluids 24/7. I filled (4) 32 oz containers since I’ve been here which isn’t even a day.
I am looking forward to my breakfast this morning, I don’t know if I’m going to have an omelet or pancakes….hmmmmm maybe both. Hehe
This place really does compete with some of the great breakfast spots: IHOP, Perkins, Denny’s (Dirty Denny’s if you’re in Durango, CO), or Bob’s Diner (A shout out to all of my Kansas State peeps, maybe their food tasted so good because it was beer induced:o). Its suppose to be in the 80’s here today, nothing better than spending it in a hospital room. They do have an observatory deck on the 15th floor which we will spend some time out there today.
Friday, April 24, 2009
Chemo Day 1...Let's Get it On!!
Well, as you can see I am all hooked up and rolling getting my chemotherapy started with my Placitaxel and Ifosfomide.
Today was a beautiful spring day in NYC. We were required to be at Admissions by 1130a, we got there a half hour early but were not admitted into the hospital til 3pm. It gave Jamie and I an opportunity to have lunch in the cafeteria. When we returned there were other couples waiting. We met another patient of Dr. Feldman's, Nick Pestritto and his family Denise and Melissa. It was really nice to relate to another person who has gone thru the exact same treatment which I will be receiving. Nick is the last patient in the Phase II of the clinical trial and if all goes well with him I will be the first patient admitted into the Clinical trial in Stage III, if not I will receive the same dosages which Nick is currently receiving. He has just started the high dosage (Part B) of the treatment. They too are staying at the Hope Lodge one floor up from us and I will likely want to ask him how things are going with him.
The accommodations here at the hospital are very nice and a step up from Fox Chase in Philly. The rooms have hardwood floors and all. They also have a really good menu to eat from. Here how does this sound for dinner: Mozzarella Sticks, Caesar Salad, Spaghetti w/ Meat sauce, Chocolate Chip Cookies with Milk. Its more like Applebee's than a hospital. I may leave here having gained and not losing weight. Jamie cut out of here in daylight to head back to Hope Lodge for the night. I am watching the Yanks and Red Sox on the YES network 2-1 Yanks in the 6th. I am seeing way TOO much New York baseball. Don't worry, I'm representing w/ my KC Royals hat on. That's all for day Numero Uno. I will be in the hospital tomorrow and released to go back to the Hope Lodge on Sunday, provided all goes as planned.
Thursday, April 23, 2009
Thursday April 23rd-Central Park
Well, today was a rather relaxing day. It is somewhat of a calm before the storm. Tomorrow is when the fun starts, NOT! Today we spent tripping around Manhattan, we located two grocery stores, a Whole Foods Store (which has a lot of organic foods) and a more conventional grocery store. While going to these locations we also located one of our favorite fast food restaurants...Chipotle, which is only about 3 blocks from where we are staying. After we stopped by the grocery stores we opted to spend some time in Central Park, which is where these pictures were taken. We sat on the park benches there and were interrupted more than once by French high school students who we believe were on spring break. The fountain behind me in the picture is the fountain in the Mel Gibson movie "Ransom" where his child is abducted. We saw some other interesting things at the park: a photo shoot w/ a seven-foot tall model, three Asian couples getting their wedding pictures taken, a rollerblading daredevil who did a bunch of tricks, and a guy playing the saxophone.
We finished up the day with our somewhat "Last Supper" at Carmine's Italian restaurant in the Theater District being we don't know how much of an appetite I am going to have after the chemo starts. I check into the hospital tomorrow at 1130a.
Wednesday, April 22, 2009
Mom/Dad/Chris- I know that you were bragging earlier that you made it to the Pizzamaker twice in one week back in Lenexa, KS but I think we outdid you. Being that I have been feeling pretty good today after my catheter placement and the chemo treatment doesn't start until Friday we opted to go and get some New York Style Pizza. As you can see here we made it to Lombardi's Pizza in Little Italy. It is the first pizzeria in the United States, the birthplace of pizza, I should have eaten here long ago considering the number of slices I have eaten in my illustrious career. Be sure to bring cash they don't accept credit cards. There is some wonderful people watching in this city, we saw a group of old hippies at the restaurant, one of which looked like Santa Claus but he is up with current technology because he was talking on his iPhone. We also saw a Hockey Mullet, the guy must have been heading over to Madison Square Garden to watch the Rangers and Capitals in the Stanley Cup playoffs. That person in our picture is a random lady who wouldn't move off the bench in front of the restaurant. 
Let's Get it On!
So, I don't look too bad considering its 6am and we had to be up at 430a in the morning. We thought it would be a good idea to get a picture of me pre-op. Jamie thought the hat made me look like Picasso.
Returning to the Hope Lodge we saw something Ia person would only see in the New York City Subway system. A Billy Nicks look-alike was singing opera music to a ghetto blaster. Its not too often you see a rather robust Asian man singing opera. The Pavarotti of the "6" Line. (Sorry Billy...hehe)
Here is the beautiful finished product. Two beautiful lines protruding from my left chest.....BARREL! I'm somewhat like a Delta faucet, a red line for hot and a blue line for cold. It will make showering a bit more difficult because they want these kept dry so I have to cover them with Cling Wrap. No Jamie does not punch me in the stomach, those bruises are caused from shots which I have been giving myself since last June to thin my blood. I am not stoned, it is just that my first Vicodin pill had started to kick in.
A little bit about our temporary home...
We were lucky enough to get a room at the Hope Lodge (http://www.cancer.org/docroot/subsite/hopelodge/NY_NewYorkCity/nyc_index.asp). There are 60 rooms here and as you can probably guess...many more families in need of housing than is available. The Hope Lodge is kind of like a Ronald McDonald house for adults and their caregivers while they are in treatment.
There is a community kitchen on each floor where we are alotted one bin (about the size of a large shoe box) in the refrigerator to hold our food. There are plenty of quiet rooms to relax, many books to choose from and dvds to watch when John may not be up to venturing outside in the weeks to come.
This is the view from our window. I am sure on a sunny day it will be even better. We are one block from Madison Square Garden and will soon be professionals at the subway system.
Our room is pretty much a large hotel room. Unfortunately we were given the room with twin beds, but we aren't complaining. The last time John slept in a twin bed was in college and Jamie hasn't slept in one since Jr. High.
There is a community kitchen on each floor where we are alotted one bin (about the size of a large shoe box) in the refrigerator to hold our food. There are plenty of quiet rooms to relax, many books to choose from and dvds to watch when John may not be up to venturing outside in the weeks to come.
This is the view from our window. I am sure on a sunny day it will be even better. We are one block from Madison Square Garden and will soon be professionals at the subway system. We may not be able to go to the gym for a while, but all the walking we will be doing will kind of make up for that. You don't see very many overweight people in NYC and if you do...it is a good bet that they are a tourist and not a resident. Everyone here seems to be in fast forward and don't make eye contact. If you plan on just strolling the city streets, get out of the way or get bumped into.
Moving Day ~ April 21, 2009
Today was a very hectic day. We received the call at 11am that we needed to make our way to New York City. Within the next couple hours we had to get Roy (our pup) situated at his temporary home, pack and load up the car and get on the road.
We found out just how expensive New York City is when we hit our first tolls. Lincoln Tunnel $8, Queens Midtown Tunnel $5.......John and Jamie....broke! We made very good time or so we were told by family on Long Island since they know the real New York traffic.
While Jamie sat guard over the car on a very busy NY street, John lugged the 4 suitcases and many other necessities up to our room at the Hope Lodge. We drove out to Long Island to leave the car at Aunt Betty's since $45 a day to park in the city is NOT in our budget. Aunt Betty took good care of us with dinner and a nice visit. She drove us to the Long Island Railroad station where we picked up the train to head back into the city. After an unexpected train switch in Jamaica......Queens....not the tropical one.....we made it to Penn Station and our "home" for the next couple months.
We found out just how expensive New York City is when we hit our first tolls. Lincoln Tunnel $8, Queens Midtown Tunnel $5.......John and Jamie....broke! We made very good time or so we were told by family on Long Island since they know the real New York traffic.
While Jamie sat guard over the car on a very busy NY street, John lugged the 4 suitcases and many other necessities up to our room at the Hope Lodge. We drove out to Long Island to leave the car at Aunt Betty's since $45 a day to park in the city is NOT in our budget. Aunt Betty took good care of us with dinner and a nice visit. She drove us to the Long Island Railroad station where we picked up the train to head back into the city. After an unexpected train switch in Jamaica......Queens....not the tropical one.....we made it to Penn Station and our "home" for the next couple months.
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