... and the doctor said...

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

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!

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...

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

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

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"

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!