Sorry about the delay!

Okay, when I had the opportunity to get my life back a little, I took it! Sorry about not keep you up to date. Let me back it up a little....
I went and saw my oncologist, Dr. Chen, last Wednesday to discuss what he thought I should do (continue treatment, stop, wait etc). He felt I have done enough treatment. He, Brent and I had some talks and got some questions answered, but basically I will have another PET scan early November. Other then that, go back to the real world.

On Thursday, I went and saw Dr. Zelner, my throat Doctor. He wanted to do a follow-up after leaving the hospital to make sure I was getting better and not losing weight etc. Everything checked out in terms of where I am at now, but I wanted to know about long term damage. He felt I would make a full recovery, but was concerned if I was going to continue radiation. I indicated that it was up to me and that what he had to say would help make my decision. He felt that if I continued with the 2nd half of radiation that I would be back to where I was and would most likely be worse off. The biggest problem was that I would create more scar tissue and it would most likely not heal the 2nd time. So he pretty much said, if you do more radiation he feels I would be on liquid foods the rest of my life. So with that being said - I am done!

I am going to see my radiation Dr this week to make sure he knows what I have decided. No one can change my mind at this point. Radiation was painful and my body did not like it.

As with everything else, I am finally eating real food again - even foods I have to chew. I am doing what I can to get myself back to "normal". I am doing some walks and trying to put on some weight. I am definitely taking it one day at a time, but every day is getting better and better. We have been having a lot of meetings in the office, so I am doing everything I can to get myself there and to stay as long as I can. Getting back into full work mode will definitely take some time - just happy that I am getting back. No more dreadful days!

I'm finally home!

When I woke up yesterday, I knew I was done being in the hospital. I was feeling stronger and was able to get some food in. I was no longer on pain medications, so why did I need to lay there and take up a bed? I was able to sit and talk with multiple Doctors before getting the final approval for discharge. I can't even describe the feeling of getting unplugged from the machine, where I was no longer tangled up in IV lines....it was fantastic!

When I got home, Brent made me some pasta (I am continuing on the non-chocking foods) before completely passing out for at least an hour. I woke up in the 8th inning of the Sox game, so was able to watch Boston win again! Yeah Lester!

I never would have thought that the side effects I would encounter from radiation could get this bad. I would have never thought I made it through all of chemo to sit in a hospital for a week. I am not sure if I did a good enough job researching the side effects of radiation?!? I know all the doctors said they have never seen anything so bad (after so few treatments), but 25% of my esophagus getting completely fried wasn't even on my radar. I have numerous appointments over the next week, but in my mind continuing radiation isn't an option.

Overall, my throat still hurts, wouldn't say I am in pain....just uncomfortable. I eat really slow and have to chase everything I eat with water. I am trying to catch up with work, last week was the first time I haven't been able to work during all treatment. Not fun not being able to work and hard catching up.

I will keep you posted as I visit with all my doctors.

Hospital Update

Okay, Brent brought in his computer today - so I will do my best to give a short, but thorough update on my status. Since Wednesday, a lot has happened. It was over a week since I had eaten, was getting more and more weak and didn't feel like I was healing much. The decision was made to give me a PPN which is a combination of amino acids, sodium, potassium etc. They base what goes into this bag of "food" on a blood test of what my body is deficient in. I got the PPN on Thursday and that started a slight turn.

With the nutrients, I felt my body was able to help heal itself and I was able to sleep a lot better. I was also beginning to take less and less pain medication. By no means was the burning gone, just more bearable. The PPN was being given in my forearm which began to ache and get puffy. My veins couldn't take all the sugars from the PPN so we had to come up with a plan B. The inserted a PIC line in my arm. It's in my left arm (between my bicep and tricep) and it's a catheter that runs from there to the main artery center chest. Don't worry, they had trouble getting it in - as with every other procedure I have. It kept running into my PORT (which I already have in my chest). They finally got it in the right position on the third try.

I am sure some of you are asking, why do you have a PIC when you have a PORT?? Remember all my chemo treatments and my temperamental PORT- machine beeping? Well, the "food" has to stay on a pump and my PORT has a pinching problem that won't allow it to be on a pump. Having the PIC also allows me to have a TPN which has even more nutrients then the PPN.

I had the PIC line put in about 6pm last night and my arm is killing me. I think it's because it took them a few tries to get it in....but each hour it is getting a little better.

My roommate left yesterday, so I had the room to myself, it was GREAT! Not only did I get to sit here and watch the SOX game in peace and quiet, but I also slept really well. Instead of waking up every two hours, I slept from 11-6am and then off and on until 8. Felt great. When I woke up, breakfast was already here. I decided to go for it - how much can I get down?!? It took me close to an hour, but I managed to get a bowl of Cream of Wheat down, along with a small bottle of water! I must say, a strong motivation on forcing to eat this morning was that I got weighed, down about 15 pounds - not good at all.

Brent, Mom and I sat and had a long talk. I feel I am getting better. I don't need the pain meds and I am eating, not a lot, but eating. If I can get some dinner down, breakfast and lunch tomorrow....I want to be able to go home Sunday night. We are going to see how each meal goes before making any "official" decisions.

Yes, baby steps, but progress....

I Was Admitted

Okay, I am on my blackberry so this is going to be a short post for now.
After returning from the ER I had the reaction to the Codeine. I was able to sleep a few hours before I just starting getting sick. I was up from about 1:30am until 6:45am when Brent and I headed to the DR. (We debated all night which way we were going to go and decided having my DR admit me was better then the other way around).
I was admitted Monday about 11am, after roughly 4 days of not eating or drinking. I lost too much weight and was in a LOT of pain. They put me on all sorts of IVs. Yesterday morning they put a camera down my throat to take some pictures and saw how bad it was. Fire engine red and raw. They took a few biopsies that I won't have the results for until another few days. What we do know is Radiation did this. It was never happened this fast to anyone (another rarity, fantastic).
They are planning on keeping me until I can eat & drink on my own, or I'll end up back here...and so far I haven't progressed far.
The only thing that will heal me is time...I'll keep you posted.

Finally gave in - went to the ER

I called the on-call doctor at my Radiologist this morning, he was the same DR that was on call yesterday. I updated him on my status and we both agreed I should do everything I can to stay hydrated and come see him Monday morning. He agreed that the pain meds I am currently taking are not strong enough, but he won't prescribe morphine over the phone....so really I was still in the same position as the day before. Dad came to visit for a little bit and I knew he was just helpless, I was too. There wasn't anything I could do to get some nutrients in me. After many long hours of whimpering, not eating, pain and not drinking....I decided it was time to get some real help. I just couldn't take it anymore!

Brent and I went over to the ER at about 4:30pm. I absolutely HATE going there, especially with all the sick people sitting in there, and me being uncomfortable to begin with - it wasn't a journey I was looking forward to. When we walked in the door, there wasn't another person in sight. We were brought right into the back and I was sitting in a bed before 5 pm. Good deal, huh! They immediately started me on fluids, liquid carafate (numbing agent for esophagus and stomach) and dilaudid (pain killer). I also told them that I was concerned about my counts and since I didn't have my results back from yesterday - they did a work up right there. Turns out my counts are perfect! That's a VERY good thing, but it also means that everything that is going on is a true side effect of the esophagus inflammation. The Doctor also wanted a chest x-ray, which I was also happy to hear - that came back clear. It was the first time, since Wednesday night, where I was truly comfortable. Gotta love pain killers.

When I left, they gave me carafate to take home (which is used for people with stomach ulcers) and we are hoping that will help coat the bottom of my esophagus. All the other coating drugs I have seem to stop short. They also gave me a liquid Tylenol with Codeine - I took that and it would stay down, fantastic, I know! I am taking a break, trying to get food in and see what happens on the second try.

Tomorrow morning, Mom is coming up for my meeting with the Radiation Doctor. I want to sit and figure out what to do next. I really needed someone else to be with me for the decision even though, ultimately it's my decision. Part of me wants to stop right now, I can't go through this again. Another part of me really wants to be sure this never comes back and if one more week guarantees that, why not. So I am interested to learn what the Doctor has to say about it all before I make up my mind.

For right now, the fever seems to be gone....it keeps creeping back, but nothing as high as Friday night. I am so much more comfortable knowing I have fluids in me, so that if I do get another fever, I won't be in the super danger zone.

More to come tomorrow.....

What a night....

So yesterday, at about 5pm, Brent and I decided to take a nap. I wasn't feeling so hot and Brent was worn down from a week of teaching. Halfway through my nap, I was shivering, was too tired to think much of it....but, about an hour and a half later, when it was time to force ourselves awake, my face was on fire and feet were ice. Not a good sign. Turns out I had a fever of 101.5!! So we called Dr. Mom and just tried to find quick fixes that avoid me going to the ER. I was forcing Tylenol down and managed to get the fever down to 100 before going to bed. I definitely sweat most all the fever out of me, because I woke up with a very slight fever.

I am very concerned that my white counts are too low and that is why I am getting a fever. I haven't had blood work in two weeks. The swallowing has only gotten worse, not better. After I swallow, I feel the initial pain in my chest. Then, there is an after affect that shoots pain in my back (it's right on the opposite side of where it hurts on my chest). It's hard to describe how it feels, but basically it has me in tears just about every time I swallow.

So I was able to talk to my on-call Radiology Doctor and he suggested a few things, but I opted to go into Urgent Care with my Primary care. They gave me an order for blood work, which I did right away and a prescription. He didn't feel I needed a chest x-ray, because my lungs sound clear. The prescription is for a possible infection going on in my chest that might be causing the fever. So they really aren't 100% sure what's going on, but the Doctor and I did agree that a fever on a cancer patient is very different then a normal person getting a fever. So we will be waiting on the edge of our seats a little for those results.

So for the time being, the goal is to not get dehydrated. I have already lost 4 pounds in two days...so I have to find ways to get food in me. Brent crushed up a vicodin and put it in apple sauce and now I am going to force some of an instant breakfast. I really thought radiation was going to be the "easy" part, so far, it's quite the opposite!

Cancelled Radiation

I went in to the office today and told them what was going on. They had me go see the doctor before my treatment and he is having me take the next two days off. He wants to give my throat some time to heal and prescribed a gargle that has Benadryl, Maalox and Lidocaine. It helps to numb most of my throat for about 5 minutes. He also told me start taking my vicodin again as well. There wasn't even a question about getting that down. Brent crushed it up and we put it in apple sauce - worst tasting apple sauce I've ever had! Brent and I went shopping and loaded the fridge with ingredients for smoothies, yogurts, jello, ice cream and lots of soups. I am hoping that these next few days will help it heal so I can finish up all my treatments next week.