Summer in Manhattan

Home Sweet Home

2009-08-17T15:36:00.003-04:00

I got home from the hospital on Saturday August 15th, one week after the procedure. Although this was suppose to be a minimally evasive procedure we had some hiccups along the way. The typical stay the doctors said was 2-4 days depending on how the incision site drained. So, worst case scenario we should have been out of there by Wednesday. Wednesday rolled around and the drain had lost suction and wasn't producing anything so instead of believing that the incision site was clear they elected to hook me up to wall suction. It is our opinion that with this wall suction, which was stronger than the manual drain suction the drain itself likely attached to a blood vessel and irritated it. Wednesday afternoon the drain site began to bleed but not into the drain but out the side of my chest, the doctors and nurses elected to watch it til Thursday morning, where at which time they made the decision to pull the drain. Upon removing the drain from my neck the incision site continued to bleed, a lot. Later in the afternoon the doctors attempted to stop the bleeding by using a surgical application called surgicell which was to clot the site. Instead of bleeding out of the wound I continued to bleed which ballooned my neck into a Hematoma, my neck swelled up considerably and it was difficult to move. Thursday night the on-call doctor visited my room and opened up the hole which was closed earlier in the day to allow all of the fluids to come out and remove the pressure on my neck, to do this he had to make the hole larger in my neck.

Because of this I have to have the dressing on the wound changed twice a day, once by a visiting nurse and the other time Jamie dons her nurses outfit and does it. It is somewhat like playing the game operation for she has to swab the hole in my chest and then pack it with a gauze strip to collect any fluids draining, I am lucky that Jamie has a strong stomach and can manage doing this without feeling sick. If the roles were reversed I might feel a bit queezy.

A crazy ordeal but at least we are through it.

We finally got the pathology on the lymph nodes which were removed and they all came back negative, meaning no cancer which is a relief.

Left Neck Lymph Node Dissection

2009-08-11T14:15:00.002-04:00

Well, the procedure went well on Saturday August 8th. We are just now waiting for the incision site to stop draining. I currently have a drain sticking out of my neck. Once the draining slows down I should be discharged. The neck was sore for the first couple of days but has been feeling pretty good. The healing process has been slowed a bit because when they get to the lymph nodes they do have to cut through tendons and this can produce "kile" in the area vacated by the lymph nodes. To alleviate this the doctor has put me on a low fat diet with no meats allowed. I've cut some weight since being here. Just wanted to give a quick post as to where things are at, Jamie and I are optimistic I will get discharged tomorrow or Thursday.

Wed. July 22nd

2009-07-22T10:46:00.002-04:00

Well, it is good to be back home with Jamie and in familiar surroundings. Today I am going to be headed up to a satellite facility to Sloan-Kettering in Basking Ridge, NJ. This location was recommended to me by the other two guys, (Nick and Hiram) whom I met up in New York City and they said it to be more convenient and closer than going all the way into the city.

I have to get labwork done today along with a CT Scan. From the CT Scan they will be making a determination if anything additional needs to be done with my procedure for the left neck lymph node dissection on Aug 8th.

I will be having pre-admissions testing performed in NYC next Thursday which will require a trip into the city. That is pretty much where all of the treatment stands at this point. I can't explain how nice it is to be home.

A quick note to Tommie and Laurie Davis, I got your package and the Shawnee Mission West T-Shirt fits fine and in fact I have already worn it. It isn't quite as "soft" as my 16-year old shirt but I will be sure to break it in. Thanks.

Update

2009-07-14T16:21:00.003-04:00

I haven't posted for a few days because there hasn't been any real new news. It now has been set that the next step that needs to be done is having the lymph nodes dissected from the left of my neck. I was in hopes of getting it done soon. The procedure for the left neck lymph node dissection has been set for Saturday August 8th. I have a couple of appointments between now and then but mostly will be awaiting to get this done and once done a follow up CT Scan to allow my doctor to review my scan to make sure all is clean. If this is the case then next steps would be follow-up doctors visits and tests to make sure all remains clear.

B-I-N-G-O

2009-07-09T10:26:00.002-04:00

Well, it has come down to this. Last night my Dad and I went to the Bingo and Pizza party down on the 6th floor of the Hope Lodge. The people at the lodge played some games that really confused some of the people here. They played a: ("T", "X", "+", "U" and many others). We had people at our table who actually claimed they didn't know how to play BINGO.

Anyway, the real story was my Dad who cleaned up winning three times last night taking home a collection of chatzke items: a pewter salt and pepper shaker, 2 decks of playing cards and poker chips, and a duffel bag. My Dad was glowing ear to ear claiming he has never won at BINGO in his life. Well, he made up for it last night.

I still haven't gotten a call from the surgeons office as to scheduling my left neck lymph node dissection. They will be getting a call from me today.

In a Holding Pattern

2009-07-07T13:32:00.002-04:00

We have met with the Head and Neck doctor and he is in agreement with Dr. Feldman's initial recommendation. He said that for him it is a more minor surgery than what he normally performs, but that he typically does about 100 of these procedures a year. I don't know what he was looking for but he stuck a scope far down my nose and in my throat yesterday, my Dad said that he was able to see it on the TV screen attached to the scope. The doctor asked if I had any questions and my main one was, "How soon can we get this done?" Dr. Kraus said that he would have his secretary call me in the next couple of days to schedule the procedure. He said that it would likely be scheduled in the next couple of weeks.

I also had labwork done yesterday and received a phone call from Dr. Feldman late in the day with encouraging words, my counts are all starting to come back and more than anything he was happy to see that the Creatinine number which he has been so closely watching came down again from 2.2 to 1.9. This number is a reflection of my kidney functions. Although still high it is coming more into where my initial baseline was of around 1.5.

So at this point we are waiting to get a surgery date for this lymph node removal and also the dates and times for the pre-admission testing that accompanies it.

Dad Settling In...

2009-07-03T11:22:00.002-04:00

Dad has settled in here at the Hope Lodge and is helping me clean my cupboards of all of the food I have stored in them. It seems to rain every day here in New York. I can't wait to leave this city, although I don't know when that is going to be. Dad and I met with Dr. Feldman yesterday and the CT Scan shows the lymph nodes in my neck did take to the chemo having shrunk some. Dr. Feldman believes this to be the root cause of why my tumor markers went up. To correct this I will likely be having surgery to have these removed. We have a consultation with the head and neck doctor next Monday to get his opinion and if it is to be removed schedule a date....the sooner the better.

Nothing else new here, have a good 4th of July.

Mom Departs

2009-07-01T16:11:00.002-04:00

Well, after a week being in the Big Apple my Mom returns to Kansas City. I think she was ready for the slower pace of life. Things are bigger, brighter, and move faster here in NYC. Dad has remained on as my caregiver thru the remainder of my treatment.

We visited today with the Kidney Doctor who said that they will continue to monitor my kidney functions and would like to see me in another month.

We have an appointment tomorrow w/ Dr. Feldman to review my most recent CT Scan and determine what the course of action is at this point.

Jamie is busy working back home and also being kept busy by Roy the dog. I miss her dearly, it has been over two weeks since I've seen my wife and can't wait to get home and be with her.

Weekend Update

2009-06-29T09:28:00.002-04:00

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

2009-06-25T09:27:00.002-04:00

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

2009-06-23T11:24:00.002-04:00

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

2009-06-21T18:51:00.002-04:00

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

2009-06-20T17:53:00.002-04:00

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

2009-06-19T19:42:00.002-04:00

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....

2009-06-17T20:55:00.002-04:00

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

2009-06-15T11:05:00.002-04:00

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

2009-06-10T21:38:00.002-04:00

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

2009-06-09T21:04:00.002-04:00

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

2009-06-08T11:55:00.003-04:00

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

2009-06-07T19:10:00.002-04:00

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

2009-06-07T11:52:00.006-04:00

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

2009-06-05T19:50:00.002-04:00

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

2009-06-04T19:38:00.002-04:00

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?

2009-06-02T20:13:00.002-04:00

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.

Saturday

2009-05-30T18:12:00.003-04:00

Friday was an uneventful day....(We like those kind of days around here). We walked up 5th Avenue to about 48th Street and back, it was a very nice day. We were biding some time for it was the day for our room to get cleaned. When we got back they were about to clean the room so we went down to the 6th Floor Terrace and each of us sat outside and read our books for a couple of hours. I had a twinge of a headache when we came back to the room so I laid down for a couple of hours and when I awoke it was about 7pm. We watched, or should I say I watched several episodes of the "Dog Whisper." I hate to say it but I'm hooked. I am trying to take tips from Cesar Millan on how to effectively be a "Pack Leader". Jamie has gotten into a new series of books which she loves and actually finished the book in one sitting. The last book I finished in one sitting was a Choose Your Own Adventure book back when I was 10 years old. Finished up the night watching the Nuggets get worked by the Lakers in Denver. There's always next year.

Today was a gorgeous day here in the city and one of those days you just want to be out walking around. I felt good today as we made our way over to the hospital. It was a scheduled appointment for them to draw my blood and check to see if there was anything that I needed i.e. blood transfusion, platelets, or anything else. The results came back good in which I only needed a bag of magnesium which can be given in about 30 minutes. My white blood cell count came up from Thursday (as expected with the stem cell transplant), my red blood cell count or hemoglobin held strong at 8.3, (thanks to a blood tranfusion of two bags of blood on Thursday) and my Platelets rose from 16 to 31 (thanks to a platelet tranfusion also given on Thursday). All of these numbers had to be paged to my doctor for his review. He is in Orlando, FL at the National Oncologist Convention. Sounds like a real hoot, eh. We here wonder who of the doctors would be buying the first round of shots at the bar. Probably not my doctor, he told us that the convention is attended by approximately 40,000 doctors from across the country and that he was actually presenting at it, specifically discussing his findings with the research study which I am currently in.

We stopped on the way home and did a bit of grocery shopping at K-Mart (sorry Dad) no Wal-Marts to my knowledge in Manhattan and K-Mart is right across the street attached to Penn Station.

We went out to grab a bite to eat and while walking home we noticed that there were a LOT of police cars and police officers lining 6th Avenue. I went up to one of them and asked why so many cops on the street. He told me that President Obama was flying into New York City this evening for Dinner and a Broadway show. We tried a Yogurt place called Pinkberry which serves yogurt with different toppings including cereal. I had mine with Cap'n Crunch and chocolate pebbles, it was pretty good. We're back in Rm #1107 snuggling in for Saturday evening.

Tomorrow we don't having anything too big planned. One of the volunteers here at the Hope Lodge is catering a BBQ with burgers and hot dogs which we're going to stop by. Other than that, enjoy the rest of your weekend.

J & J....OUT!!

Sometimes you question....

2009-05-28T20:57:00.002-04:00

Of course when something bad happens to you there is always the "why me?" question. It is difficult not to ask yourself that question. John has brought this up before and brought it up again this morning. "It just seems so wrong that someone like me....never smoked a day in my life, eats pretty healthily and works out......should end up with cancer", as we see people walking down the streets sucking on a cigarette. It is a reasonable question and something that would bother me too.

Every week we have several doctor's appointments to go to at Kimmel Center where all oncologists practice or we are at Sloan-Kettering Cancer Center (hospital) to get his treatment. It is unfathomable in our minds that as we walk in and out of these places that we have to walk past people smoking right outside the door. They are either people in scrubs and white coats or people there visiting someone that has cancer. Now John and I have never been addicted to anything so we don't know how it feels to NEED something like a cigarette. But....we do know that after going through treatment and seeing other people suffering that we would do whatever we could to stop something that could cause us the same pain.

The topper on today's cake was walking out of the doctor's office at 6pm after platelet and 2 blood transfusions to see the oncology nurse that just flushed John's catheter hours before holding up the wall, cigarette in hand. She didn't see us there and when we said "Goodnight" to her she got a little flustered and said "oh you aren't supposed to see this". Oops!

It is hard to take the scolding she gives sometimes about making sure to take his temperature twice a day, after seeing her smoking. Just seems a little hypocritical. Oh well, we all make our own choices and maybe that is her way of coping with all the difficulties of the job.

On a good note.....John's tumor markers are undetectable. Hooray!!!!!

Good Doctor's Visit

2009-05-26T20:57:00.002-04:00

Today we had a doctors appointment at 930am which we were prompt to and got taken fairly quickly. We met today with just the doctor's nurse who successfully flushed both of my catheter lines and drew my labwork. Everything checked out, with my Hemoglobin holding strong at 8.3 from the transfusion just yesterday (<8.0 class="blsp-spelling-error" id="SPELLING_ERROR_1">Creatinin function came down a bit more from yesterday to 1.9. I am starting to notice a bit more neuropathy in my hands and feet. This is numbness and tingling that kind of comes along with the territory of chemotherapy. The other common side effect which I am starting to notice more is a constant ringing in my ears. I will get my hearing tested prior to the second high dose chemotherapy set for June 5th.

Even with everything going according to schedule and not needing any transfusions we left the doctors office after 1pm. We ran into Nick Pestritto and his Mom at the doctors office where he too had an appointment for 11am. Nick is the individual in the same program as myself who is from South New Jersey and received his initial treatment at Fox Chase Cancer Center in Philly. This is the same place where I had my surgery last November. Prompt and on-time he sent me an email later in the day that they had them waiting for hours for his lab results and when they got them back and he needed to be transfused he got to the infusion room only for them to tell him it was too late in the day to transfuse, so he said that they had to go over to urgent care unit at the hospital and have it done, he said that they were not likely to get back to their room prior to 10pm. Very frustrating to say the least.

Our afternoon consisted of Jamie running to the grocery store to pick up some things and I hung around the room and did a load of laundry while watching the Dog Whisperer, Cesar Milan. It made me think of Roy back in Pottstown with his adopted family. We are grateful to Dave, Barb, and Ashley for their help in watching Roy while we're up here getting treated. Dave, I don't know who is the Dog Whisperer of your family you or Barb...haha.

Anyway, just relaxing this evening watching Cavs vs Magic. No appointments on the schedule for tomorrow so will be resting at the Hope Lodge. Just finished my first book here, "Always Looking Up", by Michael J. Fox, I'd recommend it to anyone. A pretty good read and not too long at 275 pages. I hate to say my attention span doesn't last much beyond 300 pages without pictures.

Happy Memorial Day

2009-05-25T20:17:00.002-04:00

Today I haven't felt so great. We had an appointment scheduled at the Urgent Care Department at the Hospital to have labs drawn and a possible transfusion. We arrived there at 130p, six hours later we got to leave. Good news and bad, the good news my creatinin number dropped to 2.0 from 2.6 on Saturday so that was a great thing. My hemoglobin dropped from 8.0 to 7.5 so because of this they wanted to transfuse. So I got a bag of blood today, which I am optimistic that I won't have to get one tomorrow. My platelets dropped from 34 to 16 so because of this I got a bag of platelets, they also felt my magnesium was low so I got a bag of Magnesium. All of these I hope will make my doctors appointment go smoother tomorrow. I have already knocked on wood.

Going to the bathroom right now is somewhat painful for me. They said that this is common with chemotherapy. The nurse did give me some Kolace and Senna to help with this problem. As a precaution the Urgent Care doctor ordered an X-Ray of my lower abdomen, these results will be available to my doctor tomorrow morning to see if this can get resolved. We're pretty wiped out from just sitting today, just sitting and waiting.

Free at Last!

2009-05-24T20:03:00.002-04:00

I got out of the hospital Saturday afternoon around 230p. I went down to visit one of the other guys on the treatment which I am getting and he said that I was smiling ear to ear. I know I was. After 8 days in the hospital it felt good to get out. I did end up getting another blood transfusion prior to being discharged. I also left with a bag full of pills that I've got to take.

Yesterday afternoon and today have been relaxing days. We watched Brad Lidge blow 2 save opportunities on consecutive days against the dreaded Yankees, at least with today's game the Fightin' Phils came back and bailed him out and won 4-3 in 11 innings.

The doctors are keeping a close watch on my blood counts so Jamie and I will trek over to the hospital to get labs drawn tomorrow and Tuesday I have an appointment with my doctor where again I will have my bloodwork drawn to make sure everything is in line or if there is something that needs to be corrected. Have a great Memorial Day, enjoy a Hot Dog, Brat, or Burger off the grill for Jamie and I, they don't allow grills here at the Hope Lodge. Enjoy!

Access to the Free World....DENIED!

2009-05-22T20:25:00.002-04:00

Well, last night I struggled to get a good nights sleep, I could tell it was a busy night for the hospital staff, I got a new roommate around 3am which they questioned him until around 4am this morning, this always helps me to get a good nights sleep...NOT! Today was a disappointing day. I have been feeling good and we believed that the doctors had determined the correct dosages for the issue with the low blood pressure causing me to feel light-headed when I stood up. My Creatinin function has stayed high at around 2.8 where it should be somewhere closer to 1.5 for me. Yet the doctors from the kidney team felt comfortable that if my number stabilizes they would feel comfortable letting me go back to the Hope Lodge. Well, throughout the day we waited and as suspected they found other holes in my numbers to poke at. My Hemoglobin number came in at 7.9 and because of this they opted to give me a blood transfusion. I thought for sure with this being done I would be allowed to leave. We were made aware of this around 1130a but it wasn't until around 230p that they actually started the transfusion which takes typically about 2 hours. The Nurse Practitioner said that my doctor would be stopping by to make the final decision around 4pm. We have grown accustomed to my doctor running behind, he showed up around 5pm and to our surprise it was his decision that it was in my best interest to stay again tonight, he would prefer to see the Creatinin number come down rather than plateau as it had. He had taken the recommendation from the kidney team, but he actually has more experience with these issues than them. Dr. Feldman said that he wanted to make sure that there is no long term damage done to my kidneys.

Obviously, they will be watching my kidney function extremely closely in the coming weeks leading up to my second round of high dose chemo which is scheduled to commence on June 5th. Dr. Feldman said that if my Creatinin level remains elevated there is a possibility that they would take me off of the clinical trial and put me in the current protocol treatment. He said that this would be discussed in depth with the oncological team here.

Jamie ran to McDonald's for dinner for me, I was starving the hospital food at this point is just a complete turn off and it doesn't help that I am taking 8 salt tablets 3 times a day to help combat the issues I am having with my health. I snarfed down a Quarter Pounder w/ Cheese and a 10-Piece McNuggets no problem. Although, I would have to say the indigestion is starting to kick in.

Good night for TV here in NYC, Interleague baseball Yankee vs Phillies. Phillies up 6-1 in the top of the 7th, Raul Ibanez (former KC Royal) just took Ching Ming Wong....DEEP! Game 2 of the NBA Eastern Conference finals starts in 5 minutes.

All in all today was a very frustrating day, I thought I would be back at the Hope Lodge with Jamie. We sat around all day waiting to be told that I could leave only to be told I need to stay another night at 530p. I think I will be allowed to go home tomorrow as long as my Creatinin number doesn't go up. Everyone here on the 5th floor is getting to know me as somewhat of a fixture here, today is a week that I have been couped up in room 531B. The activities lady came by to notify me that there will be a woodworking workshop on the 15th floor tomorrow morning at 1030a. I told her I have had it on my calendar since Monday. Actually I hope that I am long gone by that time, although I will likely still be here waiting.

I'm still here...

2009-05-21T16:32:00.005-04:00

It is Thursday afternoon and I am still here in room 531B. I am thankful that the blog posts dates because they have all begun to run into one another. I was supposed to return to the Lodge on Tuesday but due to my kidney functions they have kept me here. They are measuring my Creatinin which is the function of the kidney processing fluids.....mine is high. They believe at this point they have determined the correct dosages of medications to bring it closer to a normal level so I may leave. The other item they have been tracking is what they call being Orthostatic. This is a drop in blood pressure when going from a seated to a standing position causing a person to feel light headed and possibly pass out. This also means I get a cool little label on my IV machine that says "Fall Precaution".

As you can see in the picture I have also donned some extremely cool Lederhosen. These were to help with circulation to my legs due to the Orthostatic diagnosis. I have kept my appetite up although it has been on a fast food basis. Jamie has been kind enough to be my delivery woman and has brought Subway and McDonalds. She tried to tell me it wasn't healthy, but I had a great argument in that the kidney docs told me to eat more salt. She loses that one. Speaking of Lederhosen and Germany, their is a resident on staff for the Kidney Team Felix. He is here doing his residency for two months from Heidelburg, Germany. You can tell he is not "American" due to his "European" style. I am not sure if deck shoes are in style in Europe, but they are only in style here if you own a boat or are a senior citizen. Anyway, he was fun to talk to sharing with us his recent gambling junkit to Atlantic City via the Mega Bus. He said he broke even. He said he wanted to drive down to Philly but his Flatmate had gotten some "Visitors" and they couldn't go..... good for him. He said he tried a Philly Cheesesteak and liked it. When he then told us he got it on 51st we had to explain to him that you can't get a real Philly Cheesesteak in NYC.

Since my roommate for chemo (Nick) left on Tuesday I received a new roommate Ben....a middle-aged, slow talking, Southern Gentleman from Georgia. He had a way with the nurses to get them to do just about whatever he asked. He explained to me that he requested a room change because his prior roommate snored too loud. After hearing him snore last night over the din of my headphones I actually think he woke himself up with his own snoring and it was never his roommate. ZZZZZZZZZ!

Today was another gorgeous day so we elected to spend some time on the 15th floor, observation deck. When on the 15th floor, observation deck you never know what you will see. You never expect to see a Sloan Kettering Male Review, but many patients go up there in their gowns and Jamie on more than one occassion has been flashed their twig and berries. I am sure the warm sun feels good all over.

Other than that, not much new here. We are optimistic that I can check out Friday after a week's long stay at the hospital. Game 2 Nuggets vs Lakers tonight......GO NUGGETS!

Stem Cell Transplant

2009-05-19T18:45:00.002-04:00

Well you are stuck with me blogging tonight since John is just exhausted and doesn't feel up to talking to anyone or typing an entry.

I arrived at the hospital this morning and he was nestled under his covers. I could see the exhaustion on his face. At about 11:30 they were in to give him back some of the stem cells they harvested. 5 different people were in the room for this process. Erin our favorite NP was the one to actually administer the transplant. She is very sweet. The stem cells come to the room frozen and once all the prep is complete, they put them in a warm bath to thaw them out to be injected into his catheter. It is not something they just inject in like a shot. They put in a little bit then wait 30 seconds then repeat till the syringe is empty.

They say that when the stem cells are transplanted that it is possible to have a metally taste in his mouth so they give the patients a lemon wedge to suck on while it is happening. Well I have never known John to love lemons enough to put a wedge in his mouth, he doesn't even use lemon in the iced tea that he loves. He did try the lemon but decided instead that he would just drink some water to clean out any metalic taste. The whole process was over in about 15 minutes.

The rest of the day was all about naps. John's legs have been pretty achy, so that means that his sleep is not very restful, but he does get some. He was supposed to be released today, but his kidney function number was too high so they decided to keep him until tomorrow. After they pull labs again tomorrow morning that will be the deciding factor in if he gets to check out. He is definitely ready. He doesn't like the hospital, but one extra day is better than checking back in like he did last time with a fever.

I think John and I both assumed that after getting the stem cells he would get a little pick me up like he does when he has to have a blood transfusion. Well, that is not the case. This process did not give him the boost that he had hoped for.

Gary and Jackie we did receive your package. I will let John open it when he gets back here to the Lodge. Thank you all for the care packages, cards, emails and warm wishes.

Day of Rest

2009-05-18T16:47:00.002-04:00

Today on the schedule was set to be a day of rest. That is exactly what it has been. I am starting to feel some effects of the chemo, most likely wiping out my counts. Today is the most run down I have been since being here. I dozed in and out of naps all morning and early afternoon. It was so great to see Jamie today, she stopped by for the morning and early afternoon but she too is still not 100% so she made her way back to the Hope Lodge. It is 5pm and you asked me what I've accomplished today, hmmmm. I can say that I walked around the floor for 20 minutes the morning, I ate a pancake and some sausage for breakfast, I ate a Grilled Chicken breast for lunch and around 4pm I took a shower. That's about it including writing this post. I just feel very tired and am optimistic that the stem cells being given back tomorrow will boost me up a bit. No big plans for tonight, Sleep sounds like it may be in my future.

Pestritto Posse and Belly Bumpers

2009-05-17T11:18:00.002-04:00

Well, I have to start this blog off saying I'm missing my wife. Unfortunately, Jamie has gotten a cold and has had to stay at the Hope Lodge trying to get herself healthy. I am optimistic that she will be able to stop by on Monday. It seems her temperature has faded but that she is still up against a cough and runny nose, and is getting rest to try and get herself to feeling better.

With Jamie not able to come to the hospital I spent more time with my roommate, Nick and his guests. Nick had a lot of friends and family stop by: High school friend Keith and his wife Tracy. Keith is the videographer for the UCONN women's basketball team and was sharing with us how he got to meet President Obama last week on a trip to the White House. The UCONN women's team won the National Championship last year going 39-0.

Nick's girlfriend, Melissa and her Mom Alice stopped by along with Nick's parents. Melissa and her Mom brought a Crazy Case of 30 White Castle Hamburgers/Belly Bumpers yesterday, so I got my first experience of a White Castle Burger and they were pretty tasty.

I talked to my friend Chad Barnes out in LA who is studying for a LEED test coming up on Wed to get himself certified. It has something to do with building green which is a big push out in California, and will hopefully get his firm considered over other contractors if they can boast that they build GREEN and are LEED certified.

Last night I attempted to stay up to watch Will Farrell on Saturday Night Live but I took my Ambien CR (sleeping Meds) too early and I fell asleep. I have no complaints about that. I got a much better nights sleep last night waking up at 115a, 515a, and 850a this morning.

I think I will be watching some NBA games today, Game #7 LA vs Houston and Game #7 Boston vs Orlando.

Oh What A Night!....

2009-05-16T09:05:00.002-04:00

Unfortunately, I am not referring to the Abba song. Yesterday was a long day for me. Here is my somewhat montage' aka Billy Nicks from Wrigley Field, Fenway Park, and Coors Field. For some reason I don't recall seeing a montage' from the trip to Citizens Bank Park, oh wait, we weren't awake long enough to create a montage'....haha. Maybe the next trip is to New York City, by the time this is over I will know all the spots to go, and we could make it a double dip Yankee Stadium and Citifield. We probably even have to invite Barnes as a courtesy.

1245p: Arrived at the hospital for my 1pm admittance
130p: Frank the Nurse Practitioner drew my labs, the blue port wasn't working and he said that it would have to be flushed upstairs.
300p: Taken to the 5th Floor Room #531 (was able to get it worked out to be placed with my friend Nick who is in the same treatment as myself)
315p: Melissa my nurse asks for a urine sample, she also checks the blue port and it works fine, way to go Frank!
330p: Melissa my nurse informed me that from my urine sample my Creatinine is high at 1.7 and they won't administer the chemo unless it is 1.6 or less. To remedy this they give you lots of additional fluids.
530p: After two bags of fluids and re-testing of my urine my Creatinine lowered to 1.3...time to get things started.
531p: They hung the Zofran and Amend which are both anti-nausea medication and take about 30 minutes to drip in.
600p: The first cocktail of the evening is served: Taxol or Placitaxol as it is also known, this is the lone drug where I am the true guinea pig, Nick who is in the prior cohort received 510MG, I am the first person to receive 530MG. This drug takes 4 hours to drip into your system.
800p: From the prior blood tests they notice that my Glucose level is up, a normal persons is less than 100, mine is at 200.
1000p: Time for the second cocktail of the evening: Carboplatin, this is a short one that takes about a half hour to drop in.
1030p: Time for my nightly Lovenox shot
1045p: They prick my finger to get a reading on my Glucose and it is up to 251. The nurse said that any time its over 200 the nurse have authority to administer insulin. If it gets over 400 then they have to call the on duty doctor the nurse said a person could go into a coma at this point....that was reassuring.
1055p: Received insulin shot in my arm....this was painless.
1130p: Last call for alcohol, the third and final cocktail of the evening Ifosfomide, this drug takes about 2 hours to drop into my system. Its slow to get hung because the pharmacy attempted to fill a 500MG bag with 650MG of drugs, Liz our nurse had problems with both Nick and my bags and had to send them back to the pharmacy which caused a bit of a delay.
1224a: I finished up reading a chapter in a book
130a: The Ifosfomide is done, but from my prior lab work they want to give me both Sodium Phosphate and Magnesium to keep my counts up.
330a: My machine is beeping, it is done with the two prior mentioned drips.
335a: Wondered for just a second if the Royals game is over and how my Dad is going to be on-time to Wal-Mart this morning.
426a: The nurses want to get my vital signs, all looks good
530a: The nurse brings me in my synthroid pill and a protonix pill which they say will coat your stomach.
630a: I get up and pee for the 25th time in the last 24 hours, a new personal record.
730a: I get up and walk for a half hour around the floor about 15 laps which they say is equivalent to about a mile.
800a: Ordered breakfast, an omelet, English muffin, and bacon
830a: They come to prick my finger again, good news the insulin worked, count is down to 135, don't know if I will need another insulin shot.
920a: Foods here, stomachs grumbling, I gotta go.

Friday 5/15 Well, High Dose Chemo begins...

2009-05-15T19:17:00.002-04:00

Today was a gorgeous day in the Big Apple, unfortunately Jamie and I were not really allowed to enjoy it. Yesterday was an uneventful day where we caught up on some errands running to the grocery stores, etc.

Today, Jamie woke to having a fever and a pretty good cough. We had a bit of a role reversal today, where I got to play caregiver for a little while. I ran to the store to pickup some over the counter medication to help her with her symptoms. Jamie stayed in bed and rest and I made my way to the hospital for a 1pm check-in. I was admitted about 2pm and caught a break. Nick (the other patient from NJ who is in this trial also was getting admitted so we requested to be put in the same room which we got placed in #531).

My Creatinine level was at 1.7 and it needed to be 1.6 or lower to get the chemo administered, so they opted to pump me full of fluids. Its like breaking the seal when you're drinking beer. I now seem to need to go every ten minutes, the number came down to 1.3 and they proceeded with the treatment. We found out that Nick received 510 MG of Taxol, me being in the next cohort received 530 MG. That's all for today, please keep Jamie in your thoughts that she will hopefully get better.

In having spent now almost a month in New York, you tend to notice things.... A person can purchase about anything on the streets of NYC. I misplaced my brown belt, I got one off the street for $3. They sell many other things: scarves, knock off designer purses for women, knockoff designer sunglasses to look like the stars, 600 Thread count bed sheets, Fresh fruit and vegetables (they at least advertise they are fresh), and many other things. If any of these items interests anyone don't hesitate to shoot me an email or call and I'll pick one up for you.

I think that I am getting to act more and more like a New Yorker. I seem to walk with a purpose on the sidewalks when I'm feeling good. For the most part I don't need a map to get around on the Subway system. I do listen to my Ipod when I'm alone, but I would imagine that very few New Yorkers have the same songlist that I do. I was riding the #6 train to the hospital listening to country singer George Strait's greatest hits. I have this songlist thanks in part to the fact that it is a hand me down iPod from Ryan, and because Jamie's iPod is linked up with her computer I don't have a way of changing the songlist from what Ryan had on the iPod from a couple of years ago. You might be real interested in hearing some of the songs that Ryan has downloaded on this iPod, it is pretty sappy. If anyone knows it is possible and how to change the tunes for two iPods on one computer let me know, I would be interested to know how. Well, I'm about halfway through the Taxol bag of chemo, I have Ifosfomide and Carboplatin to follow and now have to pee again, good night from Room #531. Post to you tomorrow. -John

Wed 5/13 Lions and Tigers and Bears, Oh My....

2009-05-13T21:17:00.005-04:00

Well as you can see we got out of the "Concrete Jungle" today and took the #2 Red Line up to the Bronx Zoo. It worked out real well because today was a very nice spring day. It also worked out well because on Wednesdays it is good to know that they let you choose your price for admission.

We were at the zoo from about 1015a til around 4pm and made our way back to the Hope Lodge. The animals seen in the pictures are the Giraffes (Jamie's favorite) which they just had a baby at the zoo and its name is Abigail and is in the picture. The dog below is an African Wild Dog. While at the zoo we toured a couple of the special attractions: The Congo Forest which had the Gorillas and also the Wild Asia Monorail which was about a 20 minute ride where you got to see Tigers, Elephants, and Rhinos up close in a more natural environment.

Upon arriving back at the Hope Lodge there was a catered dinner tonight which had really good salad, rice, and chicken all which was organic so that is good for a lot of the individuals who stay here whose immune systems are really beat down. While at the dinner we shared a table with a girl our age who was from Maryland and her mother. The girl was very nice to talk to and we shared our different paths that got us here at the Hope Lodge. She currently wears a wig and made a funny comment that the chemo can give her hot flashes and when this happens she sometimes has to "Pop the Top" referring to taking her wig off. Both Jamie and I got a good laugh out of her analogy.

Over the past couple of days we have noticed that my hair, although short has begun to fall out so we made the decision to "buzz" it tonight with no guard on the trimmers. This may have been the one time I would have trusted my Dad to cut my hair, he has been banned since the 9th grade when he was trimming my hair and a guard to the trimmer fell off and left a nice bald spot on the back of my head. I also noticed when I rubbed my face that my 5 o'clock shadow would show up on my hand so I shaved for likely the last time for a while and put away my shaving cream and razor. I now really look the part...haha. Jamie was my nurse afterwards and changed the dressing to my catheter site. We're watching Game 5 Nuggets vs Mavs...Go Nuggets.

p.s. Barnes I was not bagging on Valley Falls, you know I have nothing but good memories from our time out there with Betty and Lester and the around the clock Softball Tourney.

Shane, we heard from another person here at the Hope Lodge that we need to go to Grimaldi's...we'll have to check it out.

A Walk in the Park

2009-05-12T17:15:00.002-04:00

Well, Monday was an uneventful day, I had a doctor's appointment at 9am and got there on time. All went well, my "Numbers" all looked good: White blood cells, Hemoglobin, and Platelets. They also said that I could stop taking the Potassium pills which they had prescribed when my Potassium was low, so these are all good things. I am a pizza nut so for dinner we went to the first Ray's Pizza at 27 Prince Street in SoHo. There are currently over 30 different Ray's Pizza's in Manhattan, from: Ray's Pizza, Famous Ray's Pizza, Original Famous Ray's Pizza, and Big Fat Ray's Pizza (just kidding I made that last one up). Well, the votes are in and here are my rankings on the 3 different Pizza shops which we have tried so far:

#1. Lombardi's: I felt they use the best ingredients and it is a more of a sit-down type of restaurant, downer is that they are cash-only, make sure you've got the dough on you...haha

#2. Ray's Pizza: We got a Large and couldn't finish it, good pizza, a bit greasy, the guy there who makes the pizza was pretty nice and cut us a deal cause we waited 20 minutes. Supposedly the mob ran some illegal business out of this place back in the day. This pizza is more of what I think of NY Pizza, you typically order it by the slice and not the the whole pizza. The guy did give us kudos for how much we finished. They too are cash only. You think of New York City as being on the cutting edge of technology and they are more backwards than Valley Falls, KS. (Sorry Barnes)

#3. Famous Original Ray's Pizza: We had somewhat of a bad experience with them because we had it delivered and the guy who answered the phone couldn't really understand me. It was room temperature when it came to us and we had to be down on the 6th floor for orientation immediately so we only got to have one piece and then come back and warm the rest up later via microwave.

Today was a relaxing day. The pictures taken are from our park bench in Central Park looking out over the lake in the middle of it. We opted to take our lunch to the park and relax being it was such a nice day outside. There is some great people watching in Central Park, from the school students dressed in their uniforms to the French students walking through the park dressed like they just stepped out of a time machine from the 1980's. There are always weddings getting pictures taken on the bridge which you can see in the pictures. There are artists there painting pictures of the shrubbery. There was also a woman with a very good voice just up the trail singing Nat King Cole songs of which Jamie knew all the words to. Lots of people walking dogs, mostly little ones although today we saw a photogenic Bulldog and just as we were leaving the park a boxer that looked a lot like Roy. We're obviously back at our room and getting ready for dinner. Biggest Loser Finale tonight on TV, I'm picking Tara from the Green Team to win. Later.

The Weekend May 9th and 10th

2009-05-12T16:35:00.005-04:00

I've been informed by some of the people following this blog that I am slacking so I will try and get you caught up with what has been going on. We had a good weekend, with me getting a transfusion on Friday it really gave me a boost of energy, and the fact that the weather was suppose to be nice we decided to get out and see some of the sites that New York City has to offer.

Saturday we elected to make our way down to Rockefeller Center being that Jamie had not been there before. We ate lunch at the Heartland Brewery, (don't worry I only had Root Beer). While sitting in the window there eating lunch we had our first star siting. I told Jamie to turn around I think I see Hugh Jackman, and sure enough, Wolverine was standing right outside the restaurant with his family. He chose to eat across the street in a more expensive restaurant.

From there we walked over to the NBC Experience Store and took a tour of the NBC Studios which lasted about an hour, it was very interesting, we got to see two of the actual studios which they use, the NBC nightly news, we were told that when you see Brian Williams and it looks like a full newsroom behind him it is actually green screen technology and is a tape of their old newsroom at the local affiliate in Seacausus. Those people behind Brian Williams haven't been working for years. We also got to see the Saturday Night Live studio and it was our second star siting: Justin Timberlake was scheduled to host SNL that night and we were able to see him preparing for one of his skits. Jamie is in his fan club.

From the Studio tour we purchased tickets to go to the "Top of the Rock" Observation Deck to see the sites and is where the pictures of Jamie and the Empire State Building are from. Unfortunately, it was a bit of an overcast day so it wasn't as clear as we would have liked.

Sunday, we chose to Ride the #7 Purple Line out to the new Citifield, home of the Mets. Jamie and I can now cross this stadium off the list of stadiums we haven't been to. It was a real nice stadium which when you first walk into it, it is more like a mall than a baseball stadium. The entrance behind homeplate is the Jackie Robinson Rotunda and pays tribute to him. We got our tickets on Stubhub for half-price which was pretty cool. Obviously from the picture you can tell we sat upper deck. It was quite windy that day and fortunately we brought our long sleeves and by about the 4th inning the sun was hitting our seats which also warmed us up. You can see the planes landing at the nearby Laguardia Airport, they fly from right field across to left field and out of site.

As you can see I represented the KC Royals with my hat and I got more than a few comments, like "...there in first place right?" As you can see behind me on the big screen, Keith Hernandez is still a big part of the Mets and "Just for Men" hair products. There is an area in right field you can see over my shoulder which juts out further making it difficult for lefties to hit a home run, it is called "Mo's Corner" not for Mo Vaughn but for Modell's sporting goods.

It was a good weekend which we were able to see some of the sites NYC has to offer.

Friday May 8th- Its been a busy week

2009-05-08T17:04:00.002-04:00

Well, the weekend is finally here. It is 507p and I am sitting in our lunch room writing this blog, Jamie is catching an afternoon ciesta, one which she very much deserves, we have been running crazy this week. It is run, then sit for 2 hours, run, then sit for 2 hours. It gets to be very exhausting. We have had appointments everyday this week. Monday thru Wednesday we had appointments for the Stem Cell collection, Thursday we had three appointments starting at 11am which we left the Hope Lodge at 945a for and we didn't return last night til 730p. Today we left the Hope Lodge by 7am and we didn't return until 130p after my blood transfusion today. We are learning that although Sloan-Kettering may be one of the best about administering cancer treatment, they sure do take their time giving the treatment. It seems that they always run behind and even if you make an effort to get to an appointment early it never seems to matter. For instance, we were done with our 3pm CT Scan by 2pm yesterday, because we got there early and were taken early, our next appointment wasn't until 430p to see my oncologist, we got there around 230p hoping to get seen early. Instead we waited to be taken at our appointment time of 430p and proceeded to wait an additional hour and 15 minutes in the actual room to be seen.

Today our appointment was for 8am, we were the first ones there at 745a. They had to draw blood to cross and type it to get a match for the transfusion, (why this wasn't done yesterday when the drew my labs....I have no idea). They said that it would take an hour to hour and a half. Two and a half hours later we got into the infusion room for the transfusion.

We are seeing why they ask people to be here to receive this treatment, it is like a full time job. I had to get the transfusion today because my hemoglobin number was at 7.8 and they would like to see it above 8. Getting a blood transfusion helps me avoid getting out of breath when climbing stairs and getting headaches from time to time. From what I understand hemoglobin (aka Red Blood Cells) are what carry oxygen to the different parts of the body, thus when you are not getting enough oxygen it is why a person gets out of breath or gets a headache. On a good note my HCG number which had been as high as 360 was at 20 yesterday. This the doctor said was the best news he had gotten all day yesterday. A normal person's HCG or someone in remission is somewhere between 4 and 5 so mine is definitely headed in the right direction.

We don't have any plans yet for the weekend, it will all depend upon how I feel and what the weather is like.

TGIF!

Jamie of all trades.....

2009-05-06T20:59:00.007-04:00

We will start this out with good news. Today was John's third day this week to harvest stem cells. He needed a little over 2 million more to reach the 8 million mark necessary to start the high dose chemo. HE DID IT! He produced enough new stem cells in the previous 24 hours to get up over 8 million. It must have been the Chef Boyardee Spaghetti and Meatballs that he ate for lunch yesterday. I am sure it has many nutritional ingredients. Well maybe not, but nonetheless he does not have to go back tomorrow to sit for another 3 hours and hope.

It was a busy day for us both but a little busier for me. I got to try my hand at several different trades as John's "caregiver".

On John's chest where the catheter comes out it must be covered by a dressing every minute to keep it sterile. Well as you can probably guess that dressing needs to be changed and I am the lucky person to take care of that between his hospital stays. This is not just a simple band aid change. This is a multi-step, multi-glove procedure with many rules. So here I am....ready for my new duty as "nurse". John says I did a good job and I suppose I can only improve. Good thing I am not like John and get light headed at the sight of blood. Yep...I am one of those odd people that enjoys anything medical.

But my duties today did not end there....

After a couple loads of laundry it was time for trade #2...........Hair Stylist. John asked me to cut his hair.....which was much needed as you can see.

I figured...I have seen plenty of What Not To Wear episodes.....if Nick can cut hair why can't I? John said he trusted me. Maybe that was his first mistake......

You shave a little mohawk into the nice guys hair and all of a sudden he becomes a Bad Ass. He begged me to let him keep the mohawk and that when his treatment was over maybe he could get a Harley, but I had to say no and bring him back down to earth and the guy we all know and love........

His partner in treatment (Nick) lost his peach fuzz the second day of high dose chemo, so John wanted to prepare for just that. I can't imagine what it is like to lose your hair, but I can understand why he would want to make the process as easy as possible. Last time he went through chemo it fell out in patches and I suppose having it this short will make it less noticable when it starts to go.

As I am sure you all would guess....John is being a Trooper through all of this. I bet it is very hard for an active guy to feel worn out all the time when he isn't even working out. I am proud of his strength and positivity in these trying times.

Chef was my last trade of the day and then we lounged around and watched a movie.

Tomorrow is another day full of medical appointments. I have a feeling John will have plenty to say about it tomorrow night.

Sweet dreams all!

Cinco de Mayo-Where do I go?

2009-05-05T23:03:00.003-04:00

Today is May 5th or Cinco de Mayo. It was a full day for us in which we again were at the Blood Donor office to conduct the stem cell harvesting. We still haven't reached the 8 million which they want to collect, yesterday they collected roughly 3.2 million and today approx 2.4 million so hopefully after tomorrow they will have collected the needed 8 million stem cells to proceed into the high dose chemo portion of the treatment. After the stem cell harvesting we came back to the room and I fell asleep for 2 hours and it gave Jamie an opportunity to run a couple of errands. The Hope Lodge sponsored a fiesta dinner tonight which we attended and it was very good with tacos, salad, fruit, and cake.

The above pictured dog is our Roy. Barb and Dave Hamarich and their family are graciously fostering him for us while we go through this process. As can be seen by the picture Roy pees in our yard and thus kills the grass. You may wonder where dogs eliminate in New York City, WELL... It seems to be more prevalent to see canines on the affluent Upper East Side near the hospital. A lot of the dogs are small dogs which have almost taken on human characteristics to their owners. We saw two dogs today with coats on them today, one had a rain coat on being that it was raining today, and another had a fighter pilot jacket on, very similar to the one which Tom Cruise wore as Maverick in Top Gun. As we were walking along we couldn't help but notice the German Shepard in the middle of 68th Street taking a great big dump and his owner right behind him with bag in hand ready to scoop it up when fighto was done. We wonder, do these "city dogs" ever get to experience what it is like to run in the grass and choose where to go potty. Jamie and I are always careful to walk through puddles on the streets because you don't know if it is rain water, or dog pee. The buildings aren't being worn down by the Mother Nature and elements but rather due to the fact that every building gets pee'd on at least twice by every dog that walks by it.

Anyway, no more on the dog issue. Hope for at least 3 million stem cells tomorrow to get us over the hump. Good Night and sleep tight.

THANK YOU!

2009-05-05T22:38:00.003-04:00

I just wanted to write a quick thank you note to everyone out there who has been praying for us and sending us their well wishes, they are all helping. Yesterday was the first day which we got our forwarded mail. It took some time to sift through everything: bills, advertisements, magazines, and also some very nice greeting cards. I also have to say we got a very nice card from my good friend Mark Jewett, who put a benefit together on our behalf back in Kansas City back in early April. We would like to thank everyone for the outpouring of your generosity. My parents were able to attend the event and they said it was a "Who's who" of Shawnee Mission West, Kansas State, and KU Alum of friends from mine and my brothers classes not to mention several friends from the DiamondCutters softball team that I played on back in the day.

Thanks to all of your help and support it makes going through this process a helluva a lot easier and please know I am working my tail off to make sure that we beat this thing once and for all. A special thanks to the Jewett Brothers for putting the whole thing together. I hope Bryan was able to perform my favorite song of his "White Trash Queen" .

T H A N K Y O U

State of the Art Technology

2009-05-05T06:00:00.006-04:00

Well, yesterday was the first big day of the leukapheresis, or the harvesting of the stem cells which will later get returned to my body as I go through the High Dose chemo. From these pictures I am sure it is hard for most of you to tell the difference between which computer was used for this process and which was a prop on the original Star Trek series, they are both on the cutting edge of technology.

In all seriousness, the machine they did have me hooked up to does look like it is 30 years old but it does what it is suppose to, who cares. The nurses actually said that the first one ever designed and used to do this procedure was in the room right next door and they still use it today. The process is painless and takes approximately 3 hours. It is basically a cycle where the machine extracts my blood from my body, takes the stem cells out, and replaces the blood back into my body. The machine is old school and has color-coded lines showing the nurses where all of the tubing needs to go. The goal for this process is to collect about 8 million stem cells, yesterday on my first day we collected about 3 million. We are off shortly to do the process again today.

Again, we are hoping that all of the stem cells can be collected this first go round and we can get right into the high dose portion of the treatment. If not, then we go back to the beginning and it will take approximately an additional three weeks.

It is nice that they provide you TVs to watch while you sit through this process, the TV I had even had a DVD player which was nice and Jamie had brought some of our DVDs so I watched "Stepbrothers" while getting the treatment.

We stopped by a French Cafe for lunch, Le Pain Quotidien, which translates in English to, "Pain on your wallet for little food". They bring out a Roast beef sandwich open-faced and that was about it, they make REAL green tea, I am used to the Lipton's Green Tea that actually tastes good. Anyway, I guess you can say we are broadening our horizons.

One last thing before I gotta get going, Jamie and I were watching a show on Yellowstone National Park on the Discovery channel on Sunday night and during the commercials there was a commercial for Natural Light Beer. It blew my mind, I had never seen a commercial for the old reliable. Anyway, everyone have a good day and we are shooting for another 3-4 million stem cells today. Later.

I'm FREE!

2009-05-03T20:03:00.002-04:00

Today at 448p I got released from the hospital, thank goodness. They told me I would go home around noon but that I had to receive 3 bags of potassium which took about an hour each to drip into me, then at the last moment they added a bag of magnesium for good measure. We got back to the Hope Lodge and went for a burrito at Chipotle.

Tomorrow we will head back to the hospital for the leukaphresis process of them gathering the stem cells. I don't know exactly what this process entails but I will be able to blog about it tomorrow night. Have a good night.

Hell Freezes Over!

2009-05-03T09:02:00.002-04:00

This is a post to acknowledge the fact that my Mom and Dad figured out how to comment to the blog...Way to Go! This is a big day in US history, like Ben Franklin discovering electricity, Alexander Graham Bell inventing the telephone, or the invention of the microwave. Mark this date May 2nd, 2009, it will be in grade school history books for years to come.

Still Here

2009-05-02T19:38:00.002-04:00

I didn't get to go home today. Last night was a rough one, the doctors had said that I would start to experience bone pain from all of the Neupogen shots, well that kicked in last night around 1030pm I wasn't able to fall asleep til around 3am. It was like a throbbing pain in my lower back. The doctors said that it is a lot like arthritis. I have an understanding what it is like for those people who live with it everyday and I know it must be no fun. The nurses were able to prescribe me some pain medication and some meds to help me sleep. Today was an uneventful day, we watched both the Yankees game and the Phillies games. I dozed off for a while being I'm pretty tired and we went up and spent about a half hour out on the observation deck to get some fresh air. Evening is approaching and I will be watching Game 7 Bulls vs Celtics. Go Bulls! Dinners coming, salad and a bacon cheeseburger.

Hopefully, I can sleep better tonight and my counts go up enough to let me go home tomorrow. It is quite boring here. Good night.

Fri May 1st

2009-05-01T20:49:00.002-04:00

I am still here at the hospital. I got a pretty good nights sleep last night after staying up for the Bull vs Celtics 3OT thriller. Da Bulls! I was hoping that I would get to go home today, I feel a heckuva a lot better but my blood counts haven't followed suit, the doctors say that they should follow soon. They are watching my White Blood Cell count, which are the cells which help to fight sickness and infection. Being mine are low I am more susceptible to sickness out in the big, bad world so they have elected to keep me again overnight. I am optimistic to get out of here tomorrow and will start the stem cell harvesting on Monday, we hope that they can collect enough this first go 'round, otherwise it will be another 3 weeks before we can get into the high dose portion of the chemo. I have been corresponding with the guy I met from NJ who is getting the same treatment I will be receiving and he has said he has held up pretty good. I'm already falling a bit behind for he wasn't hospitalized at this stage like I have been.

Well, I'm sure most have you have heard that Chrysler LLC filed for Bankruptcy yesterday. It obviously is weighing heavy on my family's minds being both Chris and I are employed by Chrysler Financial. It has been a very good employer to both Chris and I and we are optimistic that the company will be resilient and weather this tough economic time.

Being the conference call was over an hour it gave Jamie an opportunity for an afternoon ciesta. After the call we went up to the 15th floor recreation floor and shot pool for about an hour and a half and then spent soon time out on the deck out there overlooking the Upper East Side before it started to sprinkle and we headed back to my digs in Room #530.

Jamie heads back to the Hope Lodge in the early evening and I got a call from my brother Ryan professing that this is the breakthrough year for the Kansas City Royals and that he is going to found the Zac Greinke fan club from him house in Denver, CO. Ryan, I hope you are right, the Royals have been really bad for quite some time. I'm just sitting in my room watching the Phils lose to the Mets 7-3 in the bottom of the 6th, Chan Ho Park got rocked tonight. That's all for today hopefully my post tomorrow can come from somewhere other than this hospital room. Later gators!

The best commercial ever...

2009-04-30T15:13:00.002-04:00

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

Humming

2009-04-30T12:54:00.003-04:00

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

2009-04-30T12:29:00.003-04:00

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

Another bad evening...

2009-04-29T22:05:00.002-04:00

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.

Worst night so far...

2009-04-29T09:31:00.002-04:00

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.

Night comes after a hard day...

2009-04-27T22:23:00.002-04:00

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.

Oofta!

2009-04-27T18:14:00.002-04:00

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.

Night 1- WELL....

2009-04-25T06:42:00.002-04:00

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.

Chemo Day 1...Let's Get it On!!

2009-04-24T21:05:00.002-04:00

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 23rd-Central Park

2009-04-23T19:00:00.003-04:00

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.

2009-04-22T20:30:00.003-04:00

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!

2009-04-22T20:13:00.003-04:00

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...

2009-04-22T16:29:00.005-04:00

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.

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

2009-04-22T16:18:00.003-04:00

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.