... 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!

One Cycle down, Three to go

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

(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

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

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

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

Cycle One - Day 1

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!