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"