Saturday

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....

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

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

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!

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!

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...

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

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

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

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!....

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...

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....

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

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

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

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.....

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?

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!

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

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!

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!

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

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

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!