Tres Veces

Online Links to Allen Photo Books

2011-01-31T09:28:00.005-07:00

At Allen's service(s) there were 5 books people were encouraged to sign, because they were long and many people to look at them, there are links to the books as a whole online if you would like to look at them in more detail.

Allen as a Kid - this one is all scanned pictures (and has his Mom's favorite picture on the front)

Allen Later - these were all digital pictures that Allen/Katie had

Allen and Katie - this is the one with just Allen and Katie Pictures

Allen Remix - this has a lot of duplicates and a few new ones.

(the 5th book was purchased from a different place and was a different style, which I can't link to. The photo-session from early November was done by my dear friend Paige (www.paigeelizabeth.net) the slideshow she created is linked here and the blog post she has about the shoot.

Warm Regards and Thanks to all for the memories you have shared and all of the support myself and the Lee clan have been showered with.

-- Katie

Cycle 3 Day 14 Parts 1 - 3

2010-04-01T15:57:00.004-06:00

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

2010-03-31T06:42:00.000-06:00

Cycle 3 Day 6

2010-03-25T14:50:00.002-06:00

The Stem Cells

2010-03-25T08:08:00.006-06:00

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

2010-03-25T08:00:00.005-06:00

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

2010-03-22T12:15:00.003-06:00

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

2010-03-22T11:57:00.003-06:00

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

Cycle 3 Day 2

2010-03-21T15:59:00.004-06:00

(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

2010-03-21T15:45:00.007-06:00

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

2010-03-12T14:29:00.001-07:00

Cycle 2 Day 15

2010-03-12T07:46:00.008-07:00

Cycle 2 Day13

2010-03-10T15:52:00.000-07:00

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

2010-03-10T09:05:00.001-07:00

Cycle 2 Day 11

2010-03-09T07:03:00.001-07:00

Cycle 2 Day 10

2010-03-08T16:51:00.000-07:00

Cycle 2 Day 9

2010-03-07T13:37:00.003-07:00

Cycle 2 Day 7

2010-03-04T15:53:00.000-07:00

Cycle 2 Day 6

2010-03-04T06:24:00.000-07:00

Cycle 2 Day 5

2010-03-02T17:08:00.006-07:00

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 )

2010-03-01T12:21:00.004-07:00

(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

2010-02-28T14:26:00.003-07:00

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

2010-02-28T06:00:00.005-07:00

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

2010-02-26T15:26:00.002-07:00

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

Wicked Wednesday

2010-02-26T12:20:00.002-07:00

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....

2010-02-26T12:16:00.003-07:00

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

2010-02-18T08:02:00.002-07:00

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

No IV on Valentine's Day

2010-02-18T07:59:00.002-07:00

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)

2010-02-17T21:34:00.006-07:00

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

VLOG

2010-02-17T09:22:00.010-07:00

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

2010-02-17T09:01:00.003-07:00

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)

2010-02-16T19:51:00.019-07:00

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

The things you do...

2010-02-16T19:44:00.006-07:00

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

2010-02-16T17:35:00.004-07:00

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)

2010-02-05T08:08:00.007-07:00

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 :)

2010-02-05T07:43:00.006-07:00

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)

2010-01-19T14:07:00.011-07:00

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)

2010-01-16T12:57:00.009-07:00

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...

2010-01-09T09:40:00.004-07:00

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!

2009-05-11T12:49:00.006-06:00

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....

2009-04-23T06:37:00.000-06:00

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...

2009-04-20T20:47:00.000-06:00

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!

2009-04-12T13:25:00.001-06:00

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.

Another ''bump'' in the road...

2009-04-12T13:15:00.000-06:00

Well, we have hit another bump in the road.

Early last week, I was having abdomen pain and was unable to keep anything down. During our daily visit to Radiation on Tuesday, we talked to the radiation oncologist and described what I was feeling. They sent us to the ER for X-rays of the abdomen, gave me some fluids via IV and because there was nothing evident, we were sent home with some laxitives.

That night, I still didn't feel well and the laxitives weren't working and I was still not able to keep anything down. Russ took me back to the hospital on Wednesday and they admitted me. Using a CT scan they found I had a bowel obstruction - due to scar tissue in the area - and they scheduled me for emergency surgery last Wednesday night.

They went through the same incision and removed the obstruction/scar tissue. I am back in the hospital - probably until Wednesday or Thursday of this week. One dose of radiation was skipped. (still TBD if the missed treatment from last Thursday will be tacked onto the end, making the end of radation be 4/16 instead of 4/15.)

They had an NG Tube down my nose and throat to give my digestive system a rest and that was very annoying. That was taken out yesterday and I couldn't stop grinning! Today I am "eating" clear liquids and so far so good.

This time I have been a lot more awake and it seems like in a lot less pain so hopefull recovery will be quick! I am sitting up and walking around a lot.

Back to the hospital again

2009-04-12T12:52:00.000-06:00

You can see exactly where they are radiating. It is peeling a little bit now - just some "sun"for that area. Our friend Melissa said that since it is just like the sun - we should go to Florida sunscreen up everything but that spot and just lay in the sun all day. (though I think the 5 mins on the table is a little more intense - it sounds like a good theory!)

The new incision was about 2/3 of the previous one. (time #4 through that scar)

NG Tube - Yuck, painful, all around uncomfortable.

The Vargas' visited... the future's so bright I gotta wear shades.

Clearing my mouth with the "Yankgour" no clue how to spell it... just like the dentist tool.

NG Tube out AND I am eating! (well - clear liquids - so drinking)

Some pictures

2009-03-29T09:13:00.001-06:00

All of the Prescriptions ended up on one counter, and it was kind of overwhelming, so Katie took a picture

Also - pictures of the marks they made on my body for the radiation. These are all stickers. The second one shows the where the tumor is located in my spine. The machine rotates, so the radiation is both in front and in back.

4th Time?

2009-03-29T08:51:00.000-06:00

Sorry it has taken me so long to post an entry. A LOT has happened... here is a quick update:

Since Feb 10th... I have been recovering from Surgery. We left Indiana on the 24th (after the chest tubes were out - (see previous post - it sounds worse than it looked).

Since we've been at home, I have just been taking pain killers, mostly because I still have back pain (The back pain is the reason I went to get the original CT Scan), but, after the operation, it seems as though the the back pain had moved around.

We had our follow up on March 10th and we did a blood test. The AFP levels were down (tumor markers for testicular cancer) we were excited, BUT I still had a lot of back pain. The doctor believed it was residual from the surgery and was actually surprised that I wasn't in MORE pain (the thoracotomy does that). We requested a bone scan and did that Friday March, 20th. I also saw a Physical Therapist to see if she could do anything... but the back pain continued, AND got worse through the weekend. The pain settled in a different part of my back on the other side and around to my chest.

Monday we called the doctor and I went down at 1pm to talk to them. They did more bloodwork and an EKG. They ordered a CT Scan to see if it was a Pulmonary Embolism, but were not able to do it at University of Colorado Hospital (UCH) because the ER was swamped and we would have waited at least 6 hours. So we went to Boulder Community ER and got right in. The CT scan was negative for Pulmonary Embolism (PE). They offered to admit me for pain management, but I wanted to go home. UCH docs said that an MRI would be the next step if the PE was negative.

Tuesday AM after a long night of little sleep, I had Katie call the doctor's first thing in the morning. We went in and they started IV fluids and pain killers. They also gave me anti-nausea medicine that put me to sleep on the exam table. The MRI was scheduled fairly quickly, but it takes about an hour to complete and then we were back to the exam room.

At around 5pm, the doctors and nurse came in to tell us that there was another tumor. This tumor did not show up on the CT scans OR the bone scan. The location of the tumor is the most alarming. It is in the T4 of the spine (think top of breast bone but on the back - there will be a picture later to see more) The tumor is IN the bone, destroying the bone and pressing on the spinal cord. AHA - finally the source of the pain?

Immediately they gave me a high dose of steroids to shrink the swelling and provide some pain relief. Then I was admitted to the hospital. The docs from radiation came in to talk about the next steps in treatment. I have been prescribed 10 doses of radiation. These happen 1x/day on weekdays.

We finally got to a room at 11pm and found that it was a shared room and was not on the oncology floor (sigh). Russ and Katie found uncomfortable places to sleep and camped for the night. I didn't get much more sleep in the hospital bed because Neurosurgeons were in and out every 1-2 hours to make sure that my motor function was OK. (testing strength, feeling, movement) I passed with flying colors!!!

Wednesday we saw a ton of doctors, asked them a lot of questions. (see last post for some FAQs) the steroids seem to be working because the back pain is much less now.

FAQs

2009-03-29T08:48:00.000-06:00

Katie sent this email to the email list, and it seemed helpful... so here is a repeat for some:

FAQs:

Is this the same cancer?
A: it is very unlikely that it is something different (we will be pushing this issue a lot), there is no indication that this is anything different) - one of the reasons is that we are measuring the AFP Levels, which are an indicator for testicular (and one other kind) of cancer. We cannot be 100% certain that it is unless there is a biopsy. (which we are not sure if they are going to try to take) also, it is extremely uncommon for a cancer to Start there.

After radiation - is that it?
A: no, but the next course of treatment is not yet determined. It could be more chemo, it could be another surgery, it could be something else.

Wait - you said Chemo - I thought this wasn't reacting to chemo
A: yes, this would be a different chemical regimine... though that is still TBD

Why all these TBDs?
A: because radiation comes first. After radiation, we have to understand what we still believe we are up against.

Are you going back to Indy?
A: probably not. Dr. Glode is in touch with Dr. Foster and Dr. Einhorne in Indy and they are consulting about the treatment (we also understand that there was another Dr. consulted who is an expert nationally, though I do not know his/her name.) On the other hand, we may want to consult with these doctors ourselves. ... so I guess we have another TBD.

What about those great test results you were bragging about last week (AFPs)?
A; The results are still good - the AFP levels changed because MOST of the tumors were removed. The next test that I thought would be normal ... probably wouldn't have been... but we are finding this out earlier than if we had waited for them to do the next test. Basically, they still shouldn't have been that high if all cancerous tumors were removed.

Why Radiation and not Chemo - or Radiation and then chemo? and - what about surgery?
A: because of the location and the size of the tumor. (location - in the vertebrate and pushing on the spinal cord, size - like the tip of your thumb beyond the joint) radiation is the first step. This will stop growth of the tumor, give Allen some pain relief and potentially shrink/destroy the tumor. Radiation is used when there is a specific target (chemo will target the whole body) the tumor is in a dangerous place and this is the fastest way to attack it (surgery is risky because of the location of the tumor)

What are the side effects of Radiation?
A: very little. There is not pain associated with the treatment. Side effects are sore throat, cough, adema around the tumor (which is being treated with steroids)

Why didn't they catch this before? / Was this Missed?
A: This only showed up on an MRI scan. They only do MRIs on very specific parts of the body, and until he had a major complaint, there was no reason to do one.

Wait a second - he has had back pain this whole time - he HAD a complaint.
A: this was answered with the CT scan... or so they thought ... OR this is a new growth and wasn't there 6 weeks ago. (they CAN grow that fast!)

What about other tests? What else can they do?
A: Allen had a PET scan today (results not back yet) we will continue to test everything possible to get this GONE!!

Is Allen still in Pain?
A: the steroids they gave him were for 2 reasons. This is common pre-radiation and also reduces swelling which has given him some relief. He IS still complaining of pain, but it is much less than before and meds are helping.

Are you still seeing NeuroSurgeons often?
A: they are coming by more like once/day and their visits are less intensive... fewer tests on his body functions (strength, if he is feeling specific sensations, if when he closes his eyes, does he know what they are doing to him - get your minds out of the gutter - this is all G rated)

When are you leaving the hospital?
Friday - depending on the time of radiation treatment and how he is doing to make sure they are OK with him going home. (due to the blizzard out here in Colorado, Allen may not get a radiation treatment tomorrow - but they will still send us home)

Can we come visit (the hospital)?
A: Totally - We are not in a private room (which is a huge exercise in patience)

Can we come visit you at home?
A: Totally - as long as you are OK with the mess of a house... absolutely. Allen loves his people and would love to see anyone who would like to visit.

What about the Blog?
A: this is on Allen's list of things to do. Right now (literally - right now) he is sleeping and he NEEDS it!!

How are you guys doing?
A: this is a challenge. we are frustrated and tired. We really love all the positive messages you are sending because we really need it (well I should speak for me - I really need the reminder... this feels like a roller coaster - I thought the ride was over, but here we go again.)

and... one more brother goes Bald

2009-03-29T08:47:00.002-06:00

Brother Brian showing support... eyebrows and all!

another head of hair bites the dust...

2009-03-29T08:47:00.001-06:00

Pictures from Indy

2009-03-29T08:44:00.000-06:00

Monday, we went to the hospital to get Allen a CT scan and to meet with Doctor Foster and Doctor Kessler

Playing boggle on the iPhone...

Preparing to meet with Dr. Foster....

Tree arrives - and we wait to meet with Dr. Kessler...

The day of surgery...

they wait... they play cards, Katie knits.

The sticker tells them who Katie is so they can disclose medical information and status updates.

Katie is trying to help me exercise...

And a little ET tribute ... oooouuuuch

Taking the chest tubes out....

2009-02-27T08:34:00.000-07:00

AFP levels

2009-02-20T10:26:00.000-07:00

I forgot a very important point in the last post... we did the first test for the Alpha-Feta Protein levels post-surgery. They have decreased by more than 1/2 as of Sunday (and should have decreased another 1/2 as of today - but we aren't in the hospital, so we won't get them tested every five days) This will be part of the follow up in Colorado next week.

This is great news and is one indicator of a successful surgery and a cancer-free recovery.

As of right now, we are still in Indy awaiting chest tube removal and are not sure at this point when we will get on a plane.

the short story... (again by Katie)

2009-02-17T15:55:00.000-07:00

Allen has progressed and is currently out of the hospital... but we are not able to fly home yet. Allen still has a chest tube that he is draining fluid into and it can't be taken out until the flow slows down, so we are staying at Grandma and Grandpa's for a few days. It is hard to wait for it to slow down and we can't really do much to help it.

Allen has had a rough couple of days with the pain meds catching up to him making it difficult for him to poop. So he feels a little stopped up. We have switched to Tylenol and Advil which shouldn't effect him in that way, but they are not as strong. The pain in his belly from the indigestion is worse than the surgical pain right now.

The rows of stiches that Allen has are pretty impressive. Probably 14-16 inches long on the belly and about the same along the ribs on the right hand side. He normally hides the scars well with chest and belly hair - but the chemo has thinned that out and it is slow growing back (but this is getting better as well)

SO, we are in a holding pattern right now.

A Katie Update - but just through 2/10/2009

2009-02-12T14:24:00.000-07:00

I thought I would update the BLOG for Allen since he is definitely out of it, but doing great!

I will back up a bit though - to Sunday (so this may be kind of a monster post)

We left for Indy on Sunday. Friends were flying BACK from Las Vegas and met us in the terminal in passing which was very cool. The flight was painless except for the landing... we were about 6 feet from the ground when the plane took a sharp turn back into the air. After a few minutes (and lots of people chatting) the pilot gets on the intercom and says "we are going to circle the airport again because there was another plane still on our runway... welcome to Indianapolis". We headed to my Grandma and Grandpa's house and the planning began (Grandma is a planner like me - but I think it gets worse as you get older - the little 82 year old scurries around making sure everyone is comfortable) By the end of the night Russ was as comfortable as could be with comfort food (chicken noodles), tea and plenty of card playing (Euchre is the game in my family and we kept Grandpa up way past his bedtime playing - a good time was had by all)

Monday I bolted out of bed at 5am starting the list in my head of all the things I wanted to make sure we asked the doctor (I had been told that he will give you all the information you request, but to have your questions ready) We went for a donut run (a tradition when staying with Grandma and Grandpa) - Grandma made eggs for Allen - since donuts aren't on his list. We went on the adventure of finding the hospital. After getting the contrast Allen and Russ went to Whole Foods to get some fruit and nuts and peanut butter and bread (which has been awesome to have around the hospital). They returned JUST in time to get the CT Scan and we set off to find Dr. Foster's office.

Dr. Foster came in with a surgical cap on (I have yet to see him without one), sat down on the chair and started talking about the surgery... as Russ likes to say it he said "We are going to kick ass, this is how I am going to kick ass, this is how you are going to kick ass and with all that it will be a kick ass time" (alright - that is not the words he used - but close) After that meeting we all felt SO high. We agreed it was the best we had felt about Allen and his prognosis since he was diagnosed. Dr. Kesler was in the middle of a case and requested we return later to speak with him, so we went to eat at Jenny's friend's restaurant right here on Campus - Creation Cafe. We spoke with Dr. Kesler and found out there was a third tumor which would require a chest tube and a thoracotomy to remove... which adds 2+ days to the hospital stay. The personalities of the 2 docs could not be more different. Foster was dynamic and straightforward. Kesler was ready to get out of there and go to the next case too.

We went back to Grandma's house with one more person (Russ picked Tree up from the airport while we were eating) A few family members came by and we played more cards and talked.

Russ, Tree, Allen and I all decided to sleep in Tree and Russ' hotel room that night so that we were close to the hospital (which is a good thing because my alarm didn't go off and we were 20 minutes late when we woke up but only 25 minutes late by the time we got there) The docs and nurses got everything done and took Allen back by 7:20 and we were off to the waiting room.

Since we had been in such a rush to leave the room Tree and Russ went back to get their computers - but Tree came back with fewer hairs on his head! (Russ has the pictures - maybe I can bargin with him to send some this way!)

We had a nurse coming by every 90 mins with a report on what was going on and a beeper for when the doctor was coming down to talk to us so we were updated throughout. I am surprised that the time actually went pretty quickly. (I blame it on the expectation that I would be waiting for at least 8 hours)

Dr Foster took about 3 hours and helped Kesler with the first part of his surgery. Kesler took a quick hour to do the thoracotomy and clean out the third tumor. (a 4-6 hour estimate took 5 hours - not bad)

The first part of the waiting was over... we thought it wouldn't be that long BUT there was a little bit of a bed shuffle. We went up to the floor they directed us to and waited for him there for about 2 hours (the nurses said not to worry about this - and sometimes it happens... but we finally asked and he was still in recovery) ... they sent us back down and said that we could have 2 people go see him for 5 mins in recovery and it was a one time thing. Tree and I went to see him. He was itching like crazy and it was hard to hear. My emotion came in waves and after seeing him then having to leave him - that was the biggest wave. A little later we got a room and finally were able to settle in.

The nurse was great and got me a chair that allowed me to lay flat to sleep in there and was as quiet as possible throughout the night.

(ok, I lied - a day or two update at a time.... more to follow)

Russ took most of the pictures - I will request he send it this way - we have a picture of the stomach incision (we haven't seen the other one under the bandage) - but pictures of him will be posted soon and hopefully he will update when we get closer.
- by the way - a little preview - he is doing AWESOME and eating solid foods now AND walking around quite a bit.

The night before surgery....

2009-02-09T21:16:00.000-07:00

Off we go...

2009-02-06T09:40:00.000-07:00

After juicing and eating healthy for a couple weeks.... we are almost there... We are getting ready for the next couple days and getting on a plane.

We're leavin' on a jet plane don't know when we'll be back again (we want to be back Feb 17th!)

After digging a little through the packet of info we got from Dr. Foster's asst - we found an order for bloodwork that needs to be done before we head out. Thank goodness we saw it Thursday and UCH was able to get us in Today!!

No big plans for tonight or tomorrow.... just getting ready and cleaning the house so we come back to a clean house.

Who is "we" - well we have a troupe... Katie, Jenny (Katie's sister), Russ and myself. Katie's grandparents and most of her mom's side of the family are in or around Indy also. After that Tree, Mom, Taryn, Becky (Katie's other sister), Chuckie and possibly others will be coming in and out.

Tuesday is the big day for surgery. Based on past surgeries we expect 8 hour surgery and based on another person we met's surgery with Dr. Foster (they went out in December) they expected a 6 hour surgery and he was out in 2! - Katie is expecting 8 hours so that she is less fidgety. (Katie has started knitting - I wonder how many scarves we will be taking home from Indiana!)

I don't know how the internet is in the hospital there, from what I hear, it is on a different floor, but Katie or I will try to post as much as we can.

Surgery Date

2009-01-07T12:27:00.001-07:00

Sorry it has been so long since my last post. Nothing was happening for awhile over the holidays while the doctors got their schedules in order so we could make our next plans.

Surgery is scheduled for 2/10. Unfortunately we have to wait that long.

The surgery will be in Indianapolis, IN at IU Medical Center. Katie, Russ, Jenny (Katie's oldest sister) and I will fly out on the 8th.

Katie's grandparents live in Indianapolis and a few other of her mom's side of the family, so there is some other support out there.

Monday (the 9th) I will get a CT scan and we will all meet with the Drs. (Dr. Foster and Dr. Kessler (the thoracic surgeon).

Others will filter in and out later and throughout the week and my mom and sister will come out to Colorado after we get back.

Katie and I have tickets back on the 17th (which are changeable if necessary - I think I really like Frontier Airlines new model).

The holidays were nice, very relaxing. We didn't do much exciting for New Years, watching movies and vegging. I am spending my time playing video games, reading more on different types of cancer diets and talking to people about cancer prevention. I am taking hikes daily with Macaroni (our dog) and making those more challenging the more I do. It is good for me and the dog.

I am feeling pretty good, all things considered and trying to keep busy.

This past weekend was pretty exciting. My friends from home, Marc and Lindy came into town. It was the first time that they had been to Boulder so naturally I showed them around. I did take them on a few hikes (Marshall Mesa and Bluebell at Chautauqua). We did hit up a Jax and Brasserie 1010 during the weekend for dinner and drinks. All in all, we all had a great time!

In previous posts I talked about starting a macrobiotic diet. That may still be the way I go, but I am unsure at this point if that is totally the way to go. I have been getting lots of advice and a few people suggested I start juicing (no, not steroids). My mom got me a juicer for Christmas. It was delivered on Friday and started juicing on Tuesday. I have been having fun with it and trying to figure out some recipes. I go to the store to keep getting more fruit and veges. Most of the results have been tasty, but some haven't been great. I make enough for Katie to take to work with her.

Over the course of the past few months, since my diagnosis, I have received numerous messages, recommendations, Facebook posts and such from friends and family saying that they are thinking about me and thinking positively for a speedy recovery and similar sentiments. I can't express in words how great all that support has been through this time. I truly appreciate it all. Paige posted pictures on her blog: Paige Elizabeth Portraits (we are at least an entry down now) but it is pretty powerful.

Again, thank you all - I can truly feel the love from far and near. I will try to do my part and post more often - even if there is less to say (maybe my latest favorite juice combo!)

... and the doctor said...

2008-12-27T20:13:00.001-07:00

We heard back from Doctor Maroni Sunday afternoon and he and Doctor Glode confirmed that I will not be continuing chemotherapy but instead I will be going to IU Medical Center sometime shortly after the holidays. So that means that I was home for the holidays instead of in the hospital. The reason that I am not continuing chemo is because we did a CAT Scan and some blood work last Friday afternoon and there was no change in the tumor markers. In other words, the tumors are not reacting to the chemotherapy. The next option is surgery and that is what the doctors in Indiana will be doing sometime in January or early February -- we should know early next week when exactly we will be headed out and the date of the surgery.

We emailed with Dr. Foster's assistant on Monday and what we know is that we will likely be in surgery late January. They said they like 6 weeks after chemotherapy to start surgery. We will go in one day, do the pre-surgery administrative stuff and get some tests done, meet with Dr. Foster and have the surgery the next day. Dr. Foster's assistant said they typically keep people in the hospital for 4 days after surgery. We can go home right after that (if we want - Katie thinks that's kind of crazy to put me on a plane that fast) we may stay another day or two at Katie's grandparents OR in a hotel. All of the follow ups/stitch removal can be handled by doctors back here.

It sounds like the facility is in Indianapolis (at one point we thought it was in Bloomington). Luckily, either way, Katie has family in and around Indianapolis so that is nice. Here is the link to the medical center where they are doing the surgery.

http://www.iupui.edu/

Last we heard (last Tuesday 12/23) Dr. Foster had looked at the CT Scans and was getting a thoracic surgeon to look at them as well.

We may know more of a schedule on Monday or it may take more time.

How am I feeling? Katie would say "awesome" ... really I am feeling pretty good. I still don't have a big appetite but eat because I should. My taste buds are also somewhat muted. Of course that doesn't mean I am eating well... people keep sending sweets and they are too good to pass up!

My hair is now thinning. After re-shaving my head and face awhile ago, little to none has come back.

So now I sit back and get myself healthy and ready for surgery. The doctors have said that there is a 50/50 chance that they will not have to do treatment after surgery. It's quite a bit different from the last time around because all that was done was surgery -- no chemo because the the tumors were benign. It gets a little more complicated the third time around because I have already had this surgery twice before and this type of cancer should be cured after the 5-year mark from 2002. It only comes back after the 5-year mark in less than 5%.

The doctors that I am going to in Indiana (I believe that I have said this before) are the experts in this field so, I am relieved that me doc out here has suggested that I go to the them. Once we know more (early next week) I will give you all a heads-up.

More pictures - as promised

2008-12-20T13:50:00.000-07:00

Here are some more pictures from when our good friend, and photographer, Paige Elizabeth visited. (http://www.paigeelizabeth.net/)

Here is the link to the pictures when Allen shaved heads in the hospital

Home at last!

2008-12-11T16:22:00.000-07:00

Finally I am home and am able to make myself somewhat useful around the house. Let's see if I can make it for more than a weekend. I actually got home last Saturday.

I went to the ER last Tuesday evening because I was running a pretty good fever. I had a neutropenic fever. For those that are unfamiliar with what a neutropenic fever might be, I think that this link describes it best.

http://www.chemocare.com/managing/fever_neutropenic_fever_and_their.asp

For the week they pumped my body full of antibiotics. I was almost able to go home on Friday, but ran a fever Thursday evening and I blew my chance of getting out early. Instead, I got out on Saturday afternoon and am really glad to be home!

I am feeling way better than I was last week. I am actually eating more since I got home on Saturday. Katie's mom cooked chicken and noodles and it has been great comfort food!

During my hospital stay this week, Doctor Meroni visited us in the room to talk with us about the steps that he wants to take during the weeks between cycles. Doctor Meroni is one of the docs who is involved in my case because of the rareness of it. I will get into that in a little bit as well.

Awake and alert...

2008-12-11T07:51:00.000-07:00

I am finally awake and alert on Thursday morning. It took me nearly a week to get in front of a computer. The fever is down, the white cell blood is currently being checked on and I feel 100 times better than I did on Monday evening. Nothing more to update as of now. I will write more when I am home updating from the exciting life at 3214 47th Street. Feel free to visit.

technically cycle 1 - day... 10

2008-12-10T21:31:00.001-07:00

Katie is typing this update for Allen.

It has been awhile since the last post. Allen has been too tired to type. Lots has happened. As you know, we came home from the hospital on Saturday. It was rough to begin with, but good to be home.

Sunday Allen started really perking up and needed rest, but ate food and got around the house just fine. When he would get really sleepy - he would entertain the heck out of Russ with delayed comments and muted facial expressions. We had many visitors that wore him out (even a visitor that brought us a Christmas tree that they cut down especially for us!!)

Monday was very similar, he was doing well. He can't drive, definitely fatigued, but his demeanor was VERY Allen. We went back down to the hospital to get a shot that boosts his immune system by stimulating bone marrow growth. While there, we spoke with a different doctor and there is a potential change in the course of treatment (I will get to that part later... so much has happened). He was great Monday night and we both went to sleep at 9pm.

Tuesday I woke up early for a VERY busy day at work, I had meetings back to back with little break all day. I called Allen to check on him and he didn't sound great so Russ went over to check on him. He had a fever of 100.9 so Russ gave him Advil and called the nurse. With the advil, water and cold compress, the fever went down fast. The nurse told us that we should not give him more Advil after that to check if the fever was going to come back. By the time I got home from work, it had come back and Russ and I piled Allen and stuff we could grab into a car and headed down to the hospital ER to get him checked out (of course this was rush hour and they suggested we not go to the nearest hospital, but the one he is being treated at, University of Colorado Hospital, so off we went to highway driving - at 5pm - sigh - a 40 min drive took 2 hours, ah well)

The ER was great, they were waiting for us. They took him back in a room and ran tests. Bottom line is that he has Neutropenic Fever, a common thing with chemo (http://www.chemocare.com/managing/fever_neutropenic_fever_and_their.asp). It is very treatable, but he was re-admitted to the hospital so they can monitor him. After they told us what it was, Allen remembered he had this on the first go-round, which was nice to know. Russ and I stayed until he was in his room (same room) and we had talked to the doctor. (so we didn't get back until 1:40am and are, therefore, tired today)

Allen is now doing great and is still sleeping a lot. He is on antibiotics and will be in the hospital until his white cell count it up and his fever is down. (probably Friday, but maybe tomorrow)

New course of treatment: another doctor has been brought into the loop on Allen's case. They talked to the surgeon who wants to check the progress of the first cycle of chemo before starting the second. Depending on what they see in a CT scan and blood test on Friday, we will be going to a new cycle on Monday OR booking a flight to Indianapolis to talk to the doctor that trained the surgeon here... so Allen may be operated on by the same doctor that did Lance Armstrong's surgery.

Well, there's the update - I tried to be concise, but I am not very good at it :) I am sure there are many questions (we have a lot too) feel free to ask and we will answer what we can. - Check out the pictures below.

Pictures from Paige's Visit last week

2008-12-10T21:13:00.000-07:00

Here are just a few pictures from Paige's visit last week... (in no particular order)

"I believe in taking something bad and getting something good out of it"

2008-12-07T09:51:00.000-07:00

A couple pictures. Allen waiting patiently to leave the hospital and him being set up at home...

This is a post by Katie... to tell you what happened this morning.

So to get you up to date... Allen is home and had his first night here. I stayed on the couch and set my alarm for the times when I needed to wake up and shove more drugs down Allen's throat. That is what it feels like when you have to wake him up to tell him he needs to take something. It was really weird, and it felt really sketchy since it was so dark and I was waking him up. The utmost trust.

I had to set my alarm several times to make sure I remembered and have been writing it all down because there are 3 different anti-nausea drugs that we are staggering between, so I need to make sure I remember what I gave him last. (and if there is someone else here, they will be able to take over without question - so THIS is why the doctors do it)

Allen is actually doing much better this morning. For those of you who have called, you know that Allen is still really tired and doesn't talk too much. I gave Allen a bath and you can tell it made him feel better.

Allen was laying in bed with Macaroni watching Meet the Press. This morning they passed the torch from Tom Brocaw to David Gregory. Allen and I started talking about Tim Russert and we were both so sad that he was not able to see the rest of the election and report on it because we both really liked his analysis... the conversation shifted to his son, Luke Russert. Allen speculated that it was Luke taking over, but we both said he should have more experince under his belt to fill those shoes (or pants to keep the same analogy) we talked about doors being opened for Luke that wouldn't be so easy to open otherwise ... anyway - this DOES get back to Allen - Allen said "I am a firm believer in taking something bad and getting something good out of it" I looked at him and said (admittedly a little teary) "I know you are honey" - and I thought that deserved a post. When I tried to get him to describe it a little more - he has trouble finding words and says "my vocabulary stinks right now".

Allen is ready to get back to napping, so I will leave it at that. You all have seen that attitude in him and it is one of the reasons we love him so much.

Hopefully Allen will be back to blogging for himself tomorrow!

One Cycle down, Three to go

2008-12-06T08:52:00.000-07:00

Today there will be no chemo. What a relief. Unfortunately I am feeling the aches and pains and lots of nausea. I don't want to eat and I am trying to walk up and down the halls as much as I can.

Katie took 3 loads of stuff down to the car while we were waiting for me to be discharged. The wait was really long. The nurse taught Katie to flush the line of my catheter and do the dressing changes. I think we will be in the clinic enough so that she doesn't have to do it though.

The ride home was fairly peaceful and I enjoyed getting out of the hospital to escape its wrath. I came home and went right into my routine and got the mail (Katie, Ronan and Russ had a chuckle about that) but then it was up to my bed. Finally I'm at home in my bed, I have been anticipating this for 5 days and really wanting it the past 2. Katie filled my prescriptions and Russ picked them up for us.

I have not been online much for several days, but logged into my facebook and loved seeing all of the posts on my wall and encouragement for a full and speedy recovery. Unfortunately speedy is relative, but full will happen.

Katie will post a couple pictures a little later but for now, more napping.

Cycle One - Day 5

2008-12-05T19:19:00.000-07:00

(note: Katie is typing this as dictated by Allen... he is too weak to get on the computer, which as many of us know, really means something)

I have been sleeping most if not all of the day away. I'm thinking the chemo is really starting to catch up with me. I am noticably more weak and tired than I was when I arrived on Monday. My bones and joints ache and Katie cheered me for walking up and down the hall twice this evening. I just ate 2 slices of clementine and we will see if that sits with me.

Katie got sick and went home for the day, but sent her mom to sit with me. My brother in law Dave came also. I slept through most of their visits.

Katie came back to the hospital this evening and is wearing a mask.

I did not feel good a couple of times today.

Cycle One - Day 4

2008-12-04T08:30:00.000-07:00

I got up this morning off and on around 6am. I noticed Matt was up a few times and not sure if he was able to get enought sleep. I hope that he was able too. I didn't hear any snoring, so I am not sure if he slept ok or not so great.

The resident doctor came in again this morning around 8:20 to see how I was doing. I had my Boston Red Sox 2007 World Championship t-shirt on and she asked me again where I was from in Maine. I told her Boothbay Harbor. She then said, I know it well. Turns out, she went to boarding school with Kate Davidson and also knows Pete Smith. I kinda thought that was funny to make that connection being so far away from Maine.

I really enjoy making connections like that. It makes me realize how much of a small world we live in.

I drew back the shades around 9:20am and noticed that it was snowing. Snowing pretty good! If people come see me today, I hope that they make it safely.

I'm not sure if I mentioned the hospital of where I am receiving treatment. The University of Colorado Hospital in Aurora, CO is where I am currently being treated. I am on the 11th Flooth of the Anschtuz Inpatient Pavillion in the Oncology ward. Room 1136 this time around.

My sister in law Becky is coming down a little later this morning with her son Quin. I am excited to see them. I spent last Sunday afternoon with Quin watching football and he helped me cheer on the Pats. When it got a little later in the evening, Quin needed me to turn on the Bears game because that was the Sunday night game. You see, Quin is three years old and probably knows more about the Bears than I know about the Pats. He is definitely smarter than the average three year old about football and sports. I just called Becky to make sure that she was making it down ok in the snow. She is on her way and should be here within the next 20 minutes or so.

My nauseua is still pretty prevailent and I still don't have much of an appitite. The only thing that I keep nibbling and sipping on are Cherrios and Gatorade. Maybe 20 Cherrios and 8oz. of Gatorade in a about a day and a half.

When Becky and Quin got here, we took a little walk down to the cafeteria where I actually ate five fries and half of a turkey burger with a small slice of pickle and a little bit of water. I was also able to eat a couple of small fruit snacks. So far I'm holding it down well. Chemo seems to be a little better this time around, it's treating me okay. Joint pain is becoming more prevelant over the course of the days.

When we returned, Jamie the pharmacist for the oncology floor came in with a Christmas basket filled with lots of fun goodies, prepared by the pharmacy students.

After talking with the VA this afternoon, I'm pretty optimistic that they will come through with 100% temporary disability at the very minimum. When the social worker came by today, she had other avenues to help with financial support that I am also hopeful about.

Katie came back from work around 3pm and started checking out all of the new loot (she has been gone for almost 24 hours now) cheeks red from the cold.

Paige also came by this afternoon. She did a quick photo shoot of what happens for chemo... it is truly a snapshot of what happens. Can't wait to see the results.

There was a mad rush for Paige, Quin and Becky all to leave because we looked out the window and the snow seemed to be falling much faster. I am bummed that I can't go outside and enjoy the snow with my dog.

Cycle One - Day 3

2008-12-03T11:09:00.000-07:00

This morning I have not been very motivated to do a lot. Although, Katie and I did make a trip down to the solorium.

The pharmacist finally caught up with us this morning. She gave us the low down on the side effects of the drugs that I am taking and let us know to keep them informed about the nauseua so that they can continue to prescribe the right meds to combat the nausea. She also told me that I will not have an appetite for quite sometime and that there isn't too much for that.

The afternoon was fairly quiet. I did take a nap or two during an episode or two of the Family Guy.

Katie left around 4pm to go to get some work done at home and to go let off some steam playing soccer for later that evening.

Matt Vargas stopped by last night and spent the night. When he arrived, we went for a little walk outside where it was pretty cold. After a short stint outside, we came back in and roamed the halls a little further. We made our way down to the Solarium at the end of my floor. I didn't want to go too far from the room because Kim and Steve were making their way down to see me as well. They did make it down. I found them by peeking my head out of the Solarlium door and they just happened to be hanging out there. Steve brought in the pizza for all of us to eat. It looked real good but I just had no desire to eat it.

After just watching the view of downtown Denver and the clouds rolling in, I looked at the clock and noticed that it was probably time to head back to my room for the day's toxins. When we strolled back to the room, the nurses were waiting for me to start the evening's treatment. It didn't take long for them to drug me up and knock me out. I was a having a conversation with Matt, Kim and Steve and before I know it, I was pretty much out cold.

Cycle One - Day 2

2008-12-02T05:07:00.001-07:00

Late last night I called Russ and asked him about doing the LiveStrong Challenge in October in Austin, TX. He said he was in. It seemed appropriate that I sign up for today and was able to do so before midnight. I am excited about doing it this coming year because Chris and I did it last year in Philly and we had a blast even though we were only together for about 14 hours as Tree made the trip down just for the day to do it. Anyway, Russ and I are fired up to do a 45-mile ride and hope that we can get Chris and a few other people to go down with us and raise a few dollars for what I think is a great cause and have a great time and maybe meet Lance.

I went to sleep to episodes of The Family Guy from the first season. Man, that show is funny!

I started to get a headache around 2am and asked if I could get something for the pain and they gave me oxycodone. I fell back asleep and ended up getting up at 4am or so. The headache persisted into the morning and I ended up taking a Tylenol at 5am. Around the same time, they drew some blood from the Gorshong catheter that they installed last Wednesday. Drawing blood is something that they do on a daily basis.

If you notice on the title of my sections, I am titling them the Cycle number and the day of the cycle. This time around, I am going through four cycles of Chemotherapy. Each cycle consists of five days. There are three drugs that I will be receiving in this regimen -- Paclitaxel, Ifosfamide and Cisplatin. The drugs that I received back in 1999 when I was originally diagnosed were Etopiside, Bleomycin and Cisplatin. On Day 1 of this cycle I receive one drug (Paclitaxel) infused over 24 hours. (which because of the beeping last night ended up being 27 hours - we are hoping to make some time up over the next couple days) On Days two through five, I receive Ifosfamide and Cisplatin infused over a shorter period.

This is my third occurance of this disease and of course the age old question is why. If I knew that, I would be universally admired and probably set for life, at least life without the threat of cancer.

The first time you learn that you have the disease it is without a doubt a life changing event. You appreciate people and things in life alot more and you take nothing for granted. Having it a third time definitely makes you think a lot more about what might be causing this to happen to me. What might I be doing in my life that keeps this disease coming back. Am I eating too much bad food? Should I seriously consider a macrobiotic diet, eastern medicine and other alternative forms of treatment on a more consistant basis from here on out? I consider myself a fairly healthy individual who doesn't smoke and is very careful about what enters my body, but I wonder if there is something else that I need to think about.

The good news is that this reoccurance is the same type of cancer that I had previously and that this type of cancer is highly treatable and highly curable. As a matter of fact, the doctor's told me when I was originally diagnosed that if you had to pick any type of cancer to get, testicular is one of the better ones.

Katie left thie morning around 6:15 to head back to Boulder and go to work for the morning and part of the afternoon. She is planning on making it back here this afternoon.

I decided to order up breakfast this morning in hopes that I could keep it down. I ordered some scrambled eggs, bacon, saugage, potatoes, a blueberry muffin and a cranberry juice. I was pleasantly surprised that I was hungry enough to eat everything!

This morning has been fairly quiet. Just watching a little of the Today Show and surfing the net.

The nurse came in this morning around 10am and let me know that they are going to increase the dosage so that the Paclitaxel can finish infusing and they can administer the other two drugs today.

Dr. Glode, my urologist, stopped in around 10:40am to check in and see how I was doing. One thing that we talked about was the likelyhood of another surgery. He believes that doing another surgery is for sure. The surgery is likely to be what it was in 2002 where they cut you open from your sternum all they way down to below your belly button. That is by no means a small surgery. Actually, it is quite the opposite.

About 15 minutes after Dr. Glode left, a team of four doctors came in lead by Dr. Seligman to check to make sure that everything was going fine. I let them know that I don't have any nausea as of yet. They also let me know that the chemo today is going to take a little longer than expected. About 4 to 6 hours longer. Which means I will probably be here a little later on Friday.

I ordered lunch again today. I ordered a chicken salad sandwich, some baked potato chips, chocolate cake, and a coke. I am still surprised that I am able to want to order this much food. I guess maybe chemo really has changed a lot in the last ten years.

One of our good friends, Paige stopped by this afternoon around 2:00pm and hung out for a couple of hours. We just sat in the solarium with the really great view of Denver and talked for awhile. She brought a few little gift baskets for us and a cute little Christmas Tree which we will totally enjoy this week and the week of Christmas. One of our favorite trinkets was the "Grow your own Pirate". He is sitting in water in a Gatorade bottle beside my bed.

Go to your home pirate...

Talked with Social worker at around 5:00pm to help us navigate insurance and other avenues to keep in mind during this time.

Now we are into the evening and I can feel my appetite is starting to deminish. My mouth feels dry and I do feel a little bit dehydrated so I am trying to drink some water (even though) I don't really feel like it. They are giving me fluids intravenously but have suggested I drink when I can as well.

Ronan, Russ, Edwin and Scott came down tonight with Chinese Food and four full heads of hair. We had a great time laughing and joking. The nurses enjoyed the energy in the room. The highlight of the evening was ... well, we can let the pictures tell the story.

Before...

The "Un-Hawk"

Male Pattern baldness the Spot

Fester

the first cut is the deepest

They administered the next round of Chemo when everyone was here. After shaving heads, and a few more photos, I was starting to feel the effects. The boys left and I went right to sleep.

There were TONS of pictures ... we will upload to picasa and let you know the link when it gets there. And we will try to post earlier in the days too...

Pictures from Cycle One - Day 1

2008-12-02T05:05:00.000-07:00

Cycle One - Day 1

2008-12-02T04:24:00.000-07:00

This morning (Monday Dec. 1) we got up to finish the prep that we needed to do to head to the hospital for a week - including shaving my head - I didn't want to deal with the mess of it coming out naturally, we did not have the proper tools to take care of it last night and our attempt was feeble - so Great Clips it was!

We called the hospital on the way down to let them know that we were on our way and the chipper nurse on the other side said they would be ready for us.

We, with several bags: 2 computers, an xbox, clothes, work stuff for katie, pillows and blankets to make it homey and a digital picture frame (along with many many clemintines, which are Katie's diet during the winter). We kinda looked like we were staying for two weeks instead of just 5.

The room is pretty big, with a couch that folds out for Katie (or whomever wants to come stay) I also checked out the sololrium on the West side of the wing on the 11th Floor. What an amazing view! You can see the Denver Skyline and all the snow capped mountains. Too bad I won't be doing much skiing this year. I will make up for it next year.

I was disappointed that I couldn't get my XBox hooked up to the internet to enjoy more games and features however, due to hospital security (though we are not sure why it is less secure - I would rather move over a few buildings to the Childrens Hospital where they are undoubtedly dialed in to all the games they could possibly want) I suggested that I speak with the IT guru in the hopes of persuading them to change the settings on the wireless routers, but to no avail.

I was prepped for Chemo a little before 2pm - 4 drugs - including liquid benedryl. So when Katie went to get on a conference call, then came back, I was talking to with Tree and slurring my words... ready to Nap it out... I hadn't even had the whole IV of benedryl yet (it came pretty fast!) Then came the chemo... today it is Pacitaxel... which will take 24 hours to empty the I.V.

When I woke up, I was ready for a full meal! So we ordered room service and went down the the cafe to feed Katie while we were waiting for the food to come up. Yes, WE - I was fully mobile and encouraged to get up if I am feeling like it... so I joined Katie downstairs.

The only thing that is annoying now is the tubing in the drip keeps having an alarm that goes off and requires us to call the nurses several times - it is never fixed in just one try - so - things could be much worse but Katie really hates it!