Cycle 3 Day 14 Parts 1 - 3

Sorry for the video hiatus, we made 3 today to make up for it... Enjoy!

Part 1:


Part 2:


Part 3:

Cycle 3 Day 8

Cycle 3 Day 6

The Stem Cells

This is from the last of the stem cells - the last of the stem cells, the injection, the lemons - before, during and after.

The syringe is how the stem cells are reintroduced into Allen's body... it takes about 3 mins, and a lemon and a 1/2. Allen sucks on the lemons to diffuse the smell (in his case taste) of the preservative that is in the stem cells which I call tomato soup/paste.

A photo Intermission

Since we are having some trouble with uploading the videos, right now, here are a couple posts of stills:

The reality straight ahead was kind of a difficult picture to take. It was REAL and had a lot of meaning rather than the seemingly funny Quip here. (Allen started round 2 - 2 days after the show)

Now after round 2, we had visitors - my sister Becky at the top of the Empire State Building, the view and also Allen - who even walked the last 6 floors to the top. (He is still making cancer look easy!)

Cycle 3, Day 5

Day 4 was a day of rest - and Allen did - lots of sleep :)

Day 5 Allen got his stem cells - this is before the stem cells.

Cycle 3 Cycle 3 - the last of the chemo

The last of the chemo drips in... next up. RECOVERY!

Cycle 3 Day 2

(Russ was cut off, but you can sbee him directly through you ube (Link to same video above) - the camera cuts his face off - and since he is now sharing a room, there are lots of different sounde - sorry!)

A little fun hanging in the room... for the magnet boards on the walls, there are some pretty strong magnets that provide some entertainment.

Cycle 3 Day 1 - the final cycle

It was a very busy off-cycle. I had Drs Appts every day and several visitors. It kept me very busy and very active throughout the week out of the hospital. I ate at some very yummy places and Katie would say that I made up for not eating the previous 2 weeks. It was determined on Thursday that I WOULD be proceeding with the 3rd cycle because the CT scan showed the tumors shrinking even though the AFP levels didn't really indicate that. The theory is that the tumors are teratoma and may need to be removed surgically we will have to wait through the last cycle and probably a few additional weeks.

Cycle 2 Day 15 Update 2

Cycle 2 Day 15

Cycle 2 Day13

Cycle 2 Lost count on the days - nope - Day 12

Cycle 2 Day 11

Cycle 2 Day 10

Cycle 2 Day 9

Cycle 2 Day 7

Cycle 2 Day 6

Cycle 2 Day 5

Not long after the stem cells get put back into me, I still smell like tomato paste


*Katie explains the tomato paste comment - the preservative used for the freezing of the stem cells gives off a tomato paste/soup smell. Allen sucks on lemon while they are injecting the stem cells into him to distract from the smell. He can taste and smell it while they inject it. I can smell it for about 12 hours after.

the "day of rest"Cycle 2 ( Day 4 )

(Katie writing) I caught Allen in a relatively awake and lucid state when we took the video today. He is pretty miserable today and sleeping most of it away, which I guess means he is feeling less miserable while unconscious. The doctors call this day the day of rest... and he is doing just that.

2/28 Last Day of Chemo - Cycle 2

Will be in the hospital for 2 weeks total, but today is the last day of chemo infusions for this round. In this video Tree has taken over the communication since I have been sleeping lots. The IV is beeping in the background. It does this with the mass of chemo that is happening.



Katie explains the way the cycles are numbered. Day 1 = the first day of chemo of the cycle ... usually the cycle is 21 days, where the count starts over. The day number counts the number of days since chemo started. This helps measure where Allen's blood counts may bottom out and he is more succeptible to infections and other opportunistic germs.

Cycle 2 day 2

Today was a pretty miserable day as far as nausea goes. They say the side effects are cumulative, so this round is worse than last and they expect the next to be worst still :( . We will work with the drs and nurses to make sure I am not completely miserable!

Here is today's (2/27) video

Cycle 2 Day1

http://www.youtube.com/watch?v=J4mTLP8T6z8

Wicked Wednesday

We went to Wicked on Wednesday. Enjoyed the show very much!

http://www.youtube.com/watch?v=qyqHmPfNmuk

On Long Island for a few days....

We have been relaxing for about 12 days. Here's a little video of me at my neice's house "kicking it".

http://www.youtube.com/watch?v=gtCzZG27Zxw

Leaving the hospital after 18 days

Click Here for my latest video update (2/15)

No IV on Valentine's Day

Valentine's Day

This one is a little long, just sitting in the hospital, I feel pretty good, so the hospital days feel much longer while we wait.

Right before the stem cell transplant (Cycle 1, Day 5)

Day 5 of Cycle 1 (about to get some of my stem cells back)

VLOG

You may have noticed I have been starting to post videos. My plan is to post a short video every day to tell you what is going on. Katie/I will try to create a quick video as it is much more difficult to write especially from the hospital, my mind works to tell a story, but writing is difficult. (you will also notice we are a little backed up on the posting, sorry for that, we are trying to keep the videos short for easy upload and for easy viewing)

Hope this keeps the people who want to know up to date on my battle to overcome this horrible disease.

(here is a link that shows us Packing for Maine and also the room we are staying in at the Hope Lodge)

The Stem Cell Transplant Process

I realized that I haven't really described what I am doing in New York, the treatment. I will try to be brief, it is kind of an amazing process.

I am doing a stem cell transplant because normal chemo has proven not to work. The proof is that my cancer has come back again. Our doctor at University of Colorado Hospital referred us to Sloan Kettering in NYC. We visited this doctor back in June of 2009 to consult with him about a stem cell transplant because we weren't sure if the chemo over the summer would work or not (it did, but only put me in remission for 4 months)

The Stem Cell Transplant Process

(Part A is done once, Part B is done 3x)

Part A - the extraction of the stem cells ("low dose chemo")

This is called "low dose" chemo because the other part is high dose. The dose is actually the same as normal chemo. They are generating MY stem cells for transplant, an autologous transplant, this means I do not have a donor. They can use my cells because the disease is not in my bones/blood. For 3 days I am given 2 chemo drugs, then would be sent home. For the next 8 days I take a shot to stimulate stem cell growth. The purpose of the chemo is to deplete the bone marrow enough so it knows to generate new stem cells, the shots help the body produce a lot of them.

On Day 9, I am hooked up to a machine which filters the stem cells out of my blood. This is similar to dialysis. They are trying to remove 8 million stem cells to be used for part B of the treatment. On days 9-12, they try the process to get a total of 8 million cells. It took me 2 days and they got 11.2 million cells! (the doctors were impressed because I had radiation, which makes this process more difficult)

Part B - high dose chemo/stem cell transplant

High dose chemo happens for 3 days, then one day of rest, then they infuse the stem cells in me with a syringe. They infuse 2 million back into me on each cycle. There are 3 cycles of the high dose chemo. The reason they needed 8 million is in case something happened to one of the "packets" - this is a backup. Since I generated more, he has additional backups, which we don't expect will be needed. In between the high dose chemo, there is 3 weeks minimum between the first day of chemo and the start of the next cycle.

At this point, I have completed part A. I have completed the first of 3 cycles for part B. The first cycle didn't go very smoothly. I was out of the hospital for only 4 hours before having to go back because I was in my "nadir" very quickly (I was in the hospital for 18 days total not counting the 4 hour break). This is when all of my blood counts start going down and is what happens with chemo, which is why the stem cells are important, they help my body generate the blood/cells that it needs to keep my immune system fighting. The nadir period usually lasts from day 7-14 (in the 21 day cycle). The difference between chemo and high dose chemo is that the nadir period is not as predictable. High dose chemo is likely to put you in the nadir period for much longer, which is why the stem cells are important for that cell generation. During this time I am expected to feel like crap and also be exhausted while my body works so hard to give me back the cells that were stripped from me during chemo.

Clear as mud?

Pre-Surgery (for the catheter placement)

http://www.youtube.com/watch?v=CgchR5LsOUo

The things you do...

when the docs tell you you are still not ready to eat solid food... (Jan. 15th)

... and when you are stuck in the hospital for too long...

Video from 1/14

In the first one, I am sleeping. Katie took it, I don't remember it, but when she reminded me that I had the treatment I asked "Is that when it was snowing?"... you will see my breath in the nebulizer treatment which in my dream-state I guess it was snowing... while in the hospital for the first (11 day) visit after I aspirated, I had these treatments 4x/day until my lungs recovered.


http://www.youtube.com/watch?v=Qk46pbuQE7M

Christian came to the hospital while he was in town and we had a little fun with the treatment this time...

The stem cell extraction (by Katie)

Katie has hijacked the BLOG to post a few pictures and a video. Allen getting ready to do down for stem cell extractions.

The bag has the stem cells in it.

The video is of the machine. where you see the card showing colors, it is the color of the blood they are looking for (you can see the tube matches the color perfectly) the goal is to have a certain percentage of red cells in that tube. My understanding of the machine is that the blood travels from Allen, through the machine, where there is a huge centrifuge, there the blood is separated into different parts. Where you see the brief flickering, there are 3 tubes 1 - white blood cells, 2 - red blood cells, 3 - stem cells (the red and white are returned to Allen, the stem cells go to the bag)

FUN with Allen's ascites :)

Allen was getting ready to take a shower, and looked at his belly for the first time, thought it was HUGE, so he came out for a photo session. Yes, we pretended he was carrying a baby, we figure he was about 7 months preggers and I named the baby "Juice"

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.