A little bump in the road... can you say aspiration? (update through Friday, January 15th)

I last left you letting you know what the plan for the week was... and that we should be out of the hospital Wednesday afternoon.

While they were prepping me to put in the catheter in the operating room, I threw up, because I was sedated and I threw up bile got into his lungs, this means he "aspirated" this is not chemically something that is good to be in your lungs and they cleaned out what they could as soon as they could and called in the Pulmonary guys.

Katie was finally allowed to see me in the recovery room and to say the least, I was in pretty rough shape, shaking from the very high fever and breathing short breaths. Luckily before Katie passed out from worry, everything but the fever itself passed. A fever is common with the aspiration, and it was 102+, which is hard to take, you know you want to do everything to make the fever break, but you can't hide it with tylenol or something.
What do they do for aspiration? - basically continue to monitor you. I am on antibiotics and receiving shots from the nurses. (Katie was bummed that she only got to administer one shot) At this point I am not off-schedule for the stem cell harvest. To stay on schedule, they need to get the catheter in before Wednesday the 20th. Needless to say they are a little hesitant and want to make sure they control the situation so this doesn't happen again. The schedule of timing is the most important with the harvesting portion of the treatment.

Because I just had chemo and because of this complication, they are going to keep me in the hospital, it sounds like until at LEAST the 20th, and at most - Thursday the 21st. They want to keep me through the stem cell harvest, but don't necessarily want to put me straight into high dose chemo because it would be nice to get a little break from the hospital.

I didn't get much sleep Wednesday night because I had the ever-dreaded NG tube down my nose into my belly to help clean out the bile. That was removed Thursday (14th) morning - the doctors did it, which is good because I think if it was in there any longer - I would have done it myself.

The fever comes back when he has been resting for too long and he needs to be using the incentive spirometer - which sends the fever right back down. When he has a fever, they look for infection, so they have been taking blood cultures to make sure there isn't an infection they are not seeing. He is on antibiotics mostly as a precaution.


Why did this happen? - usually people aspirate when they ate too late in the day and the food is not outside of the belly (that's why they tell you not to eat/drink after a certain time) I complied with the instructions, but, in part, because of the fluid in the belly, I am not digesting well (so yes, I haven't pooped for several days) this is the assumption for why it happened in someone young.


So... my belly. Yes, it is filling up again. They will be draining the belly again Monday (18th), which will hopefully give me some relief for longer. They have also said that the tumors which are creating the fluid are chemo-sensitive, so they believe once the high dose chemo starts, the fluid should not continue to retain.


So I am back in the same bed on the 5th floor. We have rotating roommates :( (Thursday (14th) night was the worst - they brought someone in at 2am and they couldn't stop talking, and the people who brought him in were ridiculous.) ICU is monitoring me daily. They expect me to get neutropenic because my counts will continue to go down at this point. I don't know what the protocol here is for neutropenia. We will see what happens and hope that it doesn't happen.


The expectation is that we will be in the hospital through the leukopherisis. at this point they plan to try to put the catheter back in on Wednesday (the same day they will be starting the leukopherisis) I don't know if that will continue to be the plan.





When they took the NG tube out (after I was complaining LOUDLY at how much I hated it) my grin was ear to ear... I even lost my cookies (I tell you this not to gross you our or give you too much information... let's face it, it's a medical update, and we edit the REALLY gross things but at times unpleasant things are included) I tell you because though I was throwing up, I don't think I could have smiled any bigger. He was SOO happy to get i out. I think I told the NP that I would give my left nu.. oh wait... I already gave that up a while ago but I think I told them I would do cartwheels down the hall.

Visitors:
YEAH - we had a pretty busy week with Visitors.
Margot is old hat at being here and the lay of the land and encourages me to go on laps around the floor
Jen has visited as well and spent a big chunk of yesterday hanging out!
Thanks to Christian too who made time in his business trip to stop in and sit for a couple hours!!
THANKS to everyone for coming by during Allen's long stint here!

Chemo going ok for the first week.... (update through Monday January 11th)

Monday Jan 11th, we arrived in the hospital. We spoke to the Nurse Practitioner, who is great, her name is Erin. We are in room 526, bed A.

I have some video that I need to add to the blog. I will try to add that in the next day or two.

Chemo has been going OK. There is a little bit of nausea, but not too bad. I haven't had to be on anti-nausea drugs constantly, so that is good.

I am retaining fluid again. This is mostly based on my fluid input/output. The doctor had noted that this morning

I have been eating. I'm not quite eating everything on my tray and the amount of food I am eating has been less, but Katie is glad I am still eating. The drinking is a challenge since I am worried about the fluid build up.

I have been doing laps walking around the floor. This is something Katie is encouraging to keep up throughout the stay here and also when I leave the hospital. (The nurses want me moving - it is good for everything, so we are going for it)

We plan to go to Jimmy Fallon Friday - it is exciting because Jack Bauer will be the guest. My family is also coming down from Maine for the weekend so we will have plenty to do! It should be good timing since this is still the low dose chemo. (which sounds so great, but really it is the same strength they gave me last December)


Some more logistics:


Transportation
My brother Tree currently has an "extra" car (one he replaced but had not yet sold) - he has lent us the car for when we visit Long Island and such.


I am able to take the subway as long as I am not neutropenic (which means I have a high fever and a low neutrophil count) this means that my immune system is very susceptible to infection.


If I am neutropenic, we can take a taxi, but we just need to be smart - typical washing your hands and not touching your face stuff.

Schedules for now (this is what we know right now)
Sunday (10th), Monday (11th) and Tuesday (12th) - Low dose chemo
Wednesday (13th) - catheter insertion (this is outpatient surgery)
Thursday (14th) - Tuesday 1/19 - shots/dr appts
Wednesday (20th) - Stem Cell extraction (first of up to 4 days)


The hospital
All of these are double rooms. Right now we are facing a great big window, which I think is nice, but the TV is not seen that easily, so Football may not be as nice/fun to watch. There are visiting hours of 12pm-8pm, they aren't too strict about that, but it is good to know.


Visiting hours at Hope Lodge
are until 10pm, they are STRICT about these.

2010... one more time...

I arrived in New York on Monday (Jan. 3rd) for a Dr.'s appointment and to check into the Hope Lodge NYC. I had been complaining that my stomach hurt and was distended. When the doctor was finally able to examine me, they sent me to Urgent Care to drain the fluid. After it was drained, I felt 10x better. (They drained 4.5 liters of fluid from my abdomen!)


Katie arrived in NYC on Wednesday and helped settle in at the Hope Lodge. The place is a nice size and very comfortable. Only 2 things Katie would change: 1) we have 2 twin beds, so we are the Cleavers (we are trying to get into a new room with one bed so we haven't yet settled in (i.e. Unpacked) in this one 2) the couch is not a nap-able couch, so we will have to work around that a bit. There is ample closet space and the bedding is nice as well. They have a common area for a kitchen on each floor and a floor for guests to visit. No guests upstairs in the rooms.


I spent Thursday wandering around New York and walked about 80 blocks, while Katie stayed back at the Lodge working. We met with the doctor in the afternoon and they talked to us about the possibility of NOT being admitted on Friday - for a couple reasons. 1) somewhere the appointment for my first dialysis (Leukopherisis) treatment was not scheduled for the 18th as it should be and they did not have any space for an additional appointment. 2) the hospital is over-capacity right now. I am a priority because the extraction schedule is so complicated, it cannot be diverted from. We heard from the nurse Friday afternoon and I am now scheduled to start for sure on Sunday (tomorrow) This also pushes back the timing of when they put in the catheter.


Our Address (until we change rooms, which we think will only be at the end of February)
Allen R Lee
American Cancer Society
Hope Lodge New York City
132 W 32nd Street
Room #1108
New York, NY 10001
Phone # - 212 897 4420 x1108

(you need the room number only for Mail, UPS and FedEx packages do not need the room number)

I'm looking forward to getting started tomorrow so I can put this all behind me and get on with my life.

The event was a blast!

The last couple of weeks have been really busy. Almost not a moment to sit and relax until now. Monday, the 27th of April, my cousin from New York, Dawn, came in for the week for the event and to help out for the week. This was the week before chemo was scheduled to begin.

The event on Tuesday April 28th was a huge success! Both Katie and I were overwhelmed with all the people that came. Everyone had a great time, the food was amazing and you really couldn't have asked for better weather. I am sure that everyone has seen the photos via Facebook. If you haven't, here's the link:

http://www.facebook.com/home.php?ref=home#/photo_search.php?oid=70294957431&view=all

The rest of the week was jammed with doctors appointments. I think I had about six of them lined up for that week. Most of them were going to see other doctors to see if we were doing the right things medically or if maybe we should be going in some other direction. All of them gave reassuring answers.

One other exciting thing that we did that week was go to the Rockies game on Wednesday. Yes, I was well enough to ride the bus down and sit in the sun and enjoy the baseball game. Dawn enjoyed it all except for me not bringing the sunscreen. I should have known better.

Katie's Uncle Scott arrived on Thursday the 30th of April but didn't "move in" until Friday (May 1st). He was here for two and a half weeks, although it didn't feel like it. He brought his dog Gracie with him from his long trip from North Carolina. She and Macaroni got along great from the minute that they walked in the door. It almost makes me want to get a second dog.

The following week, the week of May 4th, my chemo was scheduled to start on Tuesday. We started around 7am and they administered both drugs (oxaliplatin and gemcitabine). They did the infusion as an outpatient therapy and we left there by 1pm. I didn't feel very good the rest of the day and for the next few days. That night I did end up vomiting a few times because we didn't stay ahead of the nausea. It wasn't until Thursday afternoon that I started to feel better and started eating food.

The week of May 11th was a pretty low key week as well. I had chemo on Tuesday of this week and it fairly well as I was able to eat later that afternoon with giving it back. During the weekend we went to Becky's House (Katie's sister) to celebrate Mother's Day and Jenny's Birthday (Katie's other sister). There was great food there that I was able to enjoy!

This past week I have had the week off from chemo and it has been great to have this week to relax. I went out to lunch with a few friends and met a few others for dinner during this week. My energy level during this week has been the best that it has been in a few months.

As I mentioned earlier, both Katie and I can't thank everyone enough for the show of love and support that you all have given us during this trying time. After going to a celebration of life on Friday from a friend that passed away it reminded me of how we should have more events like the one my friends and family put on for me. We should celebrate, love and support people more while they are here.

Taking a few weeks....

This week and next I am taking time to unwind from the surgery and the radiation therapy that I endured during the last few weeks. I have some follow up appointments, MRIs and second opinions that we need to seek out during this time as well.

As far as how I am feeling physically, I actually am able to get out and drive and run some errands and do a few things around the house. I still can't lift anything over 15lbs. for at least another four weeks. I have been able to take a walk around the neighborhood with Macaroni (our dog) fairly easily. My appetite is getting better as well. I am actually eating three square meals a day!

We are scheduled to start chemo the first or second week of May. This is basically a clinical trial. Here's the link to the article that our doctor pulled...

http://jco.ascopubs.org/cgi/content/full/22/1/108

(The article is medical driven and may be a little hard to follow should you choose to click on the link and read it.)

Our doctor has consulted with the world's greatest minds on Testicular Cancer including Dr. Larry Einhorn (one of the doctors credited with saving Lance Armstrong's life). And all believe that this regimen of chemo is the way to go for me.

I am going to make the most of this next week. I still have quite a few appointments that I have to make and events to attend. It is going to be a very busy week!

Been home for about a week...

I love being in the comforts of home. Especially after an unexpected trip to the hospital, admission and surgery on my abdomen for the 4th time. So for the past week or so, I have been resting and doing little things around the house. Last Thursday evening, we had some friends over and Edwin made some noodles. A good Asian noodle dish was just the right medicine. It was the biggest meal that I had had since well before surgery. We had some leftovers until Saturday. That was good because Saturday was a great noodle day. (It rained and snowed here on Friday and into all day Saturday.)

We went to Katie's sister's house on Saturday evening and spent some quality time with them and the family. We finally got to see their new home. I guess I wouldn't quite call it a home yet because their is still a little unpacking that needs to be completed. Katie cooked up a nice organic chicken dish that was really flavorful. Dave put the kids to bed around eight and we had the rest of the evening to kick back. We played a little Mario Kart on the Wii and Katie was excited that her Wii Fit age is her actual age! We left their house pretty late that night -- after midnight.

The next morning the sun came out and it was a gorgeous day! Katie's other sister Becky called and wanted to come over with Ben and Quinn and set up my birthday present -- an organic garden! They got here around 11:30am. I am really excited that I am going to have a little garden this year! Russ came over at around the same time and I whipped up a little brunch.

This morning the cleaners came over and cleaned some areas that needed to be done -- badly! With all the shuffling back and forth to the hospital, the emergency surgeries, trips to the ER, who has time to clean? A friend of ours got us a maid service for a couple of hours! How great was that! Wish they would have gotten to a little more of the house but the rooms they did look great!

I kicked back and took a nap this afternoon. I haven't napped in a while. As a matter of fact, my sleeping habits haven't been great since I got out of surgery last Wednesday. I find myself getting up at 5am everyday. I am taking a sleeping pill and a natural sleep agent and still I can only seem to get maybe six hours of sleep per night. Once my body calms down from the surgery, I think sleeping will get better.

Tonight happened to be the 'Man Dinner'. Once a month, the boys get together for a night and shoot the breeze and to catch up. Tonight was the Happy Noodle in Boulder and the special sandwich was really good! It was a crab tempura sandwich with a dipping sauce. Need to find a way to get that on the menu for awhile.

Wow!... We are really lucky to have so many great people in our lives!

All of the offers of help and energy and everything coming our way is amazing!! We have several options of places to take Mac where he is really happy. People come to the hospital and spend time. We get calls and sometimes it feels like grand central station. People are bringing Katie food since she doesn't like to leave me in this boring place. We have so many people behind us and rooting for us and it is such an amazing feeling that sometimes when I think about it, it gets me a little teary eyed and overwhelms me with positive emotion.
So... I wanted to let you all know that we really appreciate all of it and THANK YOU from the bottom of our hearts! It makes us fight that much harder to know how you all feel. We also appreciate all the help that is coming in from so many angles.

... the Easter Bunny came to my room too... in the form of Katie's family and Russ and Ronan ... pictures below.