Weekend Update

With Mom and Dad being here and me feeling pretty good we were able to take in a little bit of what New York City has to offer. We visited the USS Intrepid which had a cool display of different fighter planes on its flight deck. Saturday we did the NBC Studio tour and got to see the sets of Jim Fallon's late night and NBC Nightly news. Yesterday we spent the afternoon on a park bench in Central Park on a very nice day watching the very interesting people walking by and the numerous portrait artists gathered near our park bench.

Today we have a doctor's appointment and then a CT Scan later in the day to help determine what the next course of action is. Have a good week!

Mom and Dad Arrive

My Mom and Dad arrived yesterday from Kansas City. Mom will be here for a week and my Dad will be staying on until things are finalized here in New York. I gave them a 5 minute tour of the Hope Lodge and we made our way to their hotel. Unfortunately our cab overheated and we got kicked out about halfway there. We ended up going thru Grand Central Station and the Subway to get to their hotel. We came back by the Hope Lodge and went to dinner at Outback Steakhouse which was really good.

Today I have an afternoon doctors appointment which will likely take up most of the afternoon.

Getting Caught Up

I got out of the hospital yesterday around 2pm. That is a huge relief. It isn't home but I am so happy to be at the Hope Lodge right now. I have spent the better part of this morning getting caught up on things. Being I was up I got first dibs on the washer and dryer to do my laundry. It can really take some time because the dryers don't work so well here.

I've been getting caught up on other things as well like mail and just straightening up the place in general.

I will be having guests tomorrow for the first time. My parents are coming out to visit from Kansas City so it will be nice to have others here.

Other than that I'm feeling pretty good and just taking it easy.

Happy Father's Day

Happy Father's Day to all you Dad's out there. Sunday has been a typical slow day. I stopped by the room of Hiram Stanger, he too is one of the individuals getting this same treatment, he had a full room with his wife Paula and his Mom and Dad there. We talked for a while, he is in here getting his second round of the chemo, he seems to be doing really well. They too are from southern New Jersey near Philly like Nick. That makes all 3 of us from the Philly area, (is there something in the water there?)

I got some laps in on the floor after my shower while I was disconnected from my machine. I've watched more of the US Open it has been an interesting tournament with all of the rain and delays, it has really tested the players patience.

Today I haven't gotten too much in terms of meds, I got a bag of magnesium and one bag of antibiotics today. I splurged and ordered a pizza delivered to the hospital, to try some REAL food. Although I love pizza I was hesitant to each too much of it being my diet has been extremely bland lately. It tasted REAL good.

I am still optimistic that I will be released tomorrow and writing the blog tomorrow evening from the Hope Lodge, have a good night.

Going Stir Crazy

Well, I am going stir crazy. Today is day 60 in NYC and I just did the math, I've stayed 30 of those days in Memorial Hospital (...and counting I'm still here at the hospital). I've had 3 scheduled visits to the hospital for chemotherapy and 2 unscheduled visits for unexpected fevers I've had. I am just bored out of my mind. I get up about 8am after a visit by the team of doctors, order breakfast, shower, walk around the floor, order lunch, order dinner and go to bed and wait for the next day to start...Its like Groundhog day the movie but I don't have the motivation that Bill Murray did to improve the next day. I am feeling pretty good, just bored. I have been sitting here since 10 am , it is now 620p and watching the US Open the whole time. I hate to say it but I am just waiting for tomorrow to be over so it is Monday and hopefully I can go back to the hope lodge. If I can't go home Monday I may pull my hair out, wait I don't have any hair.

I am sick of the food here, Soy milk is disgusting but I have to use with breakfast to wet my rice krispies with my banana. Lunch is chicken noodle soup with toast, and dinner is usually mashed potatoes and jello. They are wanting to keep the diet bland because my stomach has not been right. Its a monsoon here in Manhattan, gotta order some mashed potatoes . good night.

Friday 6/19

Today I am feeling quite a bit better, my counts look fairly good today but that doesn't mean we will need platelets or blood tomorrow. Yesterday was a long day, having the cultures come back positive for infection in the catheter Dr. Feldman said that it needed to come out and come out that day. I had an ultrasound in my left calf because I said that it felt strained, he was concerned me laying in bed so much and off my blood thinner he wanted to make sure there was no clot. All checked out. I then moved on to the other department to have a temporary triple leuman catheter placed so they could give me multiple fluids while I am in the hospital. Finally last night a doctor came to my room and literally tugged the infected leukaphresis catheter out of my chest.

Today I was up out of bed more, walking around the floor and sitting in the chair in my room. I watched a lot of the US Open today. Saw Dr. Feldman before he left for the weekend, he said it will likely be Sun/Mon to get released.

Hopefully sooner than later. That is all of the update to this point.

A very hard night....

After much discussion between us and considering the questionable state of John's company, we both decided that I should return to work once my leave was up. Well that day arrived and it was today. With a heavy heart and much worry I left NYC. John's parents will be there next week to spend time with him and be his caretakers. I greatly appreciate their help.

Of course the day after I leave is the day he gets a temperature and has to go to Urgent Care. He arrived at Urgent Care last night at about 8:30 pm and did not get put into a room on the fifth floor till 5 pm tonight. He spent 21 hours in Urgent Care. It seems there was some confusion as to the protocol of moving a patient that is getting a blood transfusion.

He is now in his private room and they think the problem is that he has some sort of infection in one of his catheter lines. Dr. Feldman says he will probably start feeling better tomorrow but that he will be in the hospital till Saturday or Sunday. Since his counts are so low from the last chemo round he is very suseptible right now to any sort of infection or virus and they are being especially careful with him.

Good news is....Dr. Feldman told him today that he will not be going through the last round of chemo. His tumor markers have been undetectable since before he started the high dose and I think they are pretty confident that it got all that it needed to. Next week he will have a follow up CT scan to make sure that the chemo did get rid of the little spot they saw on the lymph node in his neck. If there is anything left in his neck they will most likely remove the lymph node. He will need to stick around and have labs drawn for a couple weeks to make sure his counts bounce back. When they decide all is A-ok, I assume they will take the catheter out and send him on home.

Many prayers and fingers crossed that the chemo has done it's job and John can get back to his "normal" life ASAP.

Recap of Past Couple of Days

Thurs 6/11- Still in the hospital, the Renal Doctors were closely watching the Creatinine function and weening me off of all of the fluids

Fri 6/12- Renal Doctors content with sending me home with the Creatinine function still high but stabilizing

Sat 6/13- Had to attend the Urgent Care Unit per the discharge nurses requests, drew labs and they said that everything looked 'OK' for the day, although they knew we were coming back tomorrow

Sun 6/14- Had to attend the Urgent Care Unit per the discharge nurses, today I required to get a bag of fluids, a bag of platelets, and a bag of magnesium at the request of my doctor. Again, he urges me to drink a lot of fluids (preferably 3 liters or more).

Mon 6/15- At the doctors office for a visit with the nurse. This pretty much brings you up to speed as to what's going on with the treatment.

Hope everyone has a good day.

Wed 6/10

Today was a quiet day at the hospital. The Creatinine function which the doctors are closely monitoring dropped from 2.7 last night to 2.4 this morning which was cause for a bit of optimism. The afternoon bloodwork came back also at the 2.4 number. The kidney doctors agreed it best to stay here at the hospital so that they can ween me off of the constant fluids and also to see if the the Creatinine level will continue to drop.

Stem Cells Given Back Today

Well,

I feel a bit better than yesterday. I am actually sitting in a chair writing this. Jamie can attest that is more than I did all day yesterday. I got my stem cells back today. They usually take 7-8 days to kick in to start boosting up my white blood cells. I think Jamie and I uncovered why I was so orthostatic yesterday....I never received my medication. The Nurse Practitioner had said that everything would be given thru the IV, but that was never done. Nor was I given the 30 salt tablets I have to take a day to control this problem, therefore it is Jamie's and my conclusion why I was so dizzy yesterday. They gave me my correct dosage today and all seems to be pretty good.

I haven't had much of an appetite these past two days surviving on chicken noodle soup, mashed potatoes and gravy, and toast along with bottled water. Food at this point just doesn't sound appealing...I know how wrong that sounds coming from me.

The real reason for me being kept in the hospital is the true concern with my Creatinine number which is a representation of my kidney function. They want to see this level off or better yet decline. Just so you understand that it is based on an individuals baseline, but Nick's been kept over tonight with a kidney function of 1.5. I started the treatment last Friday at 1.6. Therefore, I am getting pumped full of fluids and need to go constantly. Its like drinking a lot of beers except without the buzz or hangover.

I am optimistic I will feel better tomorrow, but now I just need that Creatinine number to go: Down, Down, Down.

Orthostasis strikes again

This morning at 4am John was moved to a private room as a precaution. He is orthostatic again which means his pulse drops when he stands up. He is exhausted and his legs are achy. Unfortunately he has already been told he will not be checking out tomorrow.

Please say some prayers that the docs figure all this out and get his meds right and that he feels better very soon.

Robbery at the hospital today

Yes, you read that correctly. Today as John said in the previous post he is pretty worn out and so he was in bed most of the day. I was sitting by his bedside reading. The curtain that separates the two rooms was mostly open since we are pretty good friends now with Nick and his girlfriend Melissa. Nick and Melissa went up to the recreation floor and had been gone just 5 or so minutes when a guy walked into the room. He acted like he knew them and was there for a visit with his friends. I didn't think anything of it. He asked where they were and how long they had been gone. He told us he would just wait there for them and sat in the chair on the other side of the curtain from me.

Maybe 2 minutes later he looked around the curtain and said he would go look for them up on the 15th floor. John and I didn't think anything of it. He closed his eyes to snooze and I kept reading. About 30 minutes later Nick and Melissa came back down. Nick then asked us if we borrowed Melissa hand held Nintendo DS. Nope....we sure didn't. So they began to look everywhere.....he had her look in her purse to see if she had put it there. That is when she also noticed that the money was taken from her wallet. WHAT????????????

This guy must be a true professional. I asked them if their friend found them upstairs and their response was "what friend?". Yikes! So, in the 2 minutes he was on the other side of the curtain, this guy took her game and got in her purse without one peep of noise. I just thought he was sitting there waiting. Odd thing was that her game sat on top of the table with his game, laptop and ipod yet he only took one thing.

Some people have lots of guts. What kind of person steals in the first place and really what kind of person steals from a cancer patient? What is this world coming too. Well, hopefully he needed the money more than Nick and Melissa do and he took it to feed his hungry family or something like that. JEEZ!

Sunday Morning Day #3

Well,

I was pretty tired yesterday and was the reason for no post. I know I'm slacking. It was nice that Friday night Nick Pestritto's roommate checked out so I moved down with him. Again, its nice sharing a room with someone closer to your age and going through exactly what I'm going through. Our treatment is exactly the same except I'm taking a lot of salt tablets to combat the Orthostasis (when my blood pressure drops when I stand up).

The food here which I initially raved about just doesn't have the same appeal. Before coming to to the hospital we picked up two boxes of cereal: Cinnamon Toast Crunch and Lucky Charms. Even the pizza I had for dinner didn't taste quite right.

It was both enjoyable and frustrating yesterday. I got to watch the YankeesMariano Rivera blow a save to the Rays which was pretty sweet. Then I had to watch Brad Lidge blow his 6th save for the Phillies, his second in as many days.

The attached pictures are from the 15th floor observation deck, it was a really nice day. As you can see the Chrysler building in the distance, they also have a no smoking sign, imagine that. They've got a pretty sturdy fence up around the deck as a precaution. It was so nice out there yesterday that I fell asleep on Jamie's shoulder while we were sitting in the shade on the rocker.

It was a hectic night with lots of interruptions: machines beeping, having to take meds, having to get vital signs taken, having to go to the bathroom because all of the fluids which I am receiving. We are a bit tired today but that is to be expected.

Already getting the first bag of chemo today at noon so should be done at a reasonable hour. Everyone have a good day.

Day #1 High Dose Chemo Round 2

Our admission time was set earlier so I was optimistic that things might get started earlier today. Especially with the fact that we got taken from admissions and up to our room around 1130am. Unfortunately, we had to wait for fluids to be dropped and with them watching it very closely due to my kidney function which went up today to 1.6 they opted to give me a lot of fluids. I didn't get my first bag of chemo (Placitaxel) until about 5pm and it is close to finishing up now at 8pm. I'll get two more drugs tonight, Ifosfimide and Carboplatin. Tomorrow it will be the same treatment less the Placitaxel drug. I'm starting to wind down, prior to giving a person chemo they give to a person Benadryl as a precaution to help avoid nausea with the drugs but it makes a person sleepy. Jamie was there for me all day today and I could tell she was getting as tired as I was and she headed back to the Hope Lodge, she ran out today and got us Pizza for lunch being I just don't have an appetite for the hospital food, (I brought boxes of Lucky Charms and Cinnamon Toast Crunch for breakfast). Jamie has really gotten into a series of books and has read nearly five-300 page books in the last week, she just can't put them down and when you spend the time waiting that we do, it really helps to pass the time.

I'm watching the College World Series, LSU vs Rice. Rice was the team that beat Kansas State twice in as many days to knock them out of contention. Kansas State had beaten Rice initially sending them to the losers bracket and they came back thru it and beat Kansas State twice to advance to the Super Regional. I'm watching the ESPN ticker all you Kansas City Royals fans and I see where they are losing 1-0 in the second inning with Zac Greinke giving up a run in the first.

I tried getting roomed with my friend from New Jersey, Nick Pestritto but there were no rooms available so we ended up in different rooms but are optimistic that I might get moved over tomorrow. Its easier rooming with a person you know and with both of us being younger tend to be more considerate of each other's space. I am rooming with an older gentleman, Bob Rappaport. I would say he is a lot like Walter Mathau's character in the Grumpy Old Men movies. Although, I can say he has been nothing but nice to me, he can be rather short with the nurses. His wife has called no less than 8 times and often he doesn't answer it and she lets it ring like 30 times. One time he had the nurse answer it for him while he sat there. Another he answered while the doctor was standing there and the wife wanted to talk to the doctor so he threw the doctor on the phone. The other time the cleaning lady answered the phone when he was down getting a CT Scan because she was sick of hearing the phone ring.

Well, that's about it from here. I shoot out a blog tomorrow with how things progress.

Good Night from NYC

Ready for Round #2

Today we visited the doctors office for a final check-up and for the doctors final approval before starting the chemotherapy tomorrow. Dr. Feldman said that all is a "GO." They did have us swing by the hearing doctor to check to see how the ringing in my ears was affecting my hearing. She did say that there is a drop off in the high-pitched noises which she said translates that I probably have a decrease in hearing if there is alot of background noise or in a room with poor acoustics. Dr. Feldman said that it would continue to be monitored along with my kidney function which at this point remains his main concern. Although my kidney function is now back to my baseline of 1.5, it is elevated to begin with so they will be keeping a close watch on it and he also said that they would be giving me more fluids this go round than last time. That means a lot of trips to the bathroom if you are me. When your getting a 1000mg of saline dripped into you at a rate of 500/mg per hour it doesn't take me long to have to break the seal, if you know what I mean.

While grabbing a bite for dinner tonight we had another celebrity siting: Howard Stern. We were down in the neighborhood of Chelsea and he walked right by where we were sitting having dinner.

Yesterday was an uneventful day where we stayed around the Hope Lodge. Jamie was able to do our laundry, so I've got clean clothes heading into the hospital. While I'm there I don't like to wear their gowns. It makes me feel like I'm in the hospital and should feel sick. I typically wear my shorts or sweatpants while I'm there. I'm comfortable like I would be at home. I was able to finish my second book since we have been here. This is the most I have read since I was in college. I read the book Marley and Me. A very good book, which some of the crazy antics reminded me of Roy back home but also of both of my brothers dogs: Rocky and Smokey (both of which are Labs). It is somewhat of a modern-day "Old Yeller". It was interesting in that the guy who wrote the book lives outside of Allentown, PA which is less than an hours drive from our home in Pottstown. I am glad that Jamie gave me some alone time in the room to finish the last 20 pages of the book, I'm a softy and it brings a tear to your eye reading the end of the book (you'll know what I mean if you've read the book or watched the movie).

Well, that's it for here from the Hope Lodge, next blog will be from Memorial Sloan Kettering Cancer Center. Later.

Drugs anyone?

As you can see from the picture I may have a second calling when all this is said and done...as a pharmacist. It seems that one pill gives you certain side effects that you need another pill to correct and it keeps going and going and going.

Monday we had an appointment at the doctor's office and all of the results were good.....we thought. Upon returning to our room we received a call from the Dr's nurse who had mis-read the lab results and my Creatinin function was not 1.2 like she had said but had gone up to 1.8. This prompted an unscheduled visit today. 7 hours and a blood transfusion, magnesium and a bag of saline later our day was pretty much over. Even though the numbers looked good they want to make sure I am in tip top condition for chemo this Friday. Makes sense but still stinks to waste a day in a chair.

No doctor's appointments tomorrow, but we have to drop something off over there anyway. It always seems to be something or another.