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.

Can't swallow....

After radiation yesterday, it started to hit....a tight throat and having a hard time swallowing. Tonight we went our for dinner and I definitely hit a moment of sheer panic. I know that I need to take really small bites and eat slow or if feels like I am trying to swallow pieces of glass, but this was worse then that. Have you ever "almost" choked on a piece of steak? When just a little air can get through? That is what it is like. Ben and Brent just looked at me, about to give me the heimlich, but air was getting threw, so we just waited. I could feel it going all the way down my throat and over an hour and half later, I can still feel it in my chest. From now on, I am staying with liquid and softer foods....if I decide to want to chew anything, it will be beyond a small bite.

Of course, yesterday I met with the Doctor, it was right after my treatment - right before I started having problems. That will be my first call tomorrow, because my goodness, this isn't a comfortable feeling.

Nothing new.....

It's nice to have not much to report, means I am coming around. I am still tired, have more trouble falling asleep then ever - I think it's because I don't want to forget something. Chemo brain is still in effect, but not even close to what it was. I am trying to get into the office, it's been hard to keep up. I guess life in general has been hard to keep up with. If you just pushed pause on your life, six months go by, then push play again....what would you expect. I want to be able to just go at the same pace, but it's not the case, I am about 1/4th the pace with the mentality of 100 %. So I am doing my best to balance it all. What makes it difficult as well is when I see people I haven't seen in a while and there is that look of shock when they see me. It's hard to swallow sometimes. I see myself every day, so I forget the shock of it all, but I get constant reminders daily.

I am starting my second week of radiation, 6 treatments down, 13 to go.......

Fun Fact

Brent and I went for a walk last night, we went .74 miles. We averaged, well I averaged, 40 min mile pace (I was using Brent's Garmin HR monitor & timer w/GPS). My heart rate was 85-90 just about the entire time until I got home. I climbed up the stairs to our front door, about 12 steps, and my HR spiked to 120. From 120 it continued to climb to 130-135 for at least the next minute before dropping back down. Quite a difference from a few months ago, but a workout none-the-less.......

Day 1 of Radiation

So today was the first radiation treatment. Dad ended up working in Long Beach today, so he was able to take me to my appointment. We got to the office about 12:45pm and we were back in the car leaving at 1:04pm. It was all very quick - the longest part was sitting and waiting. I had dad come with me into the room, so he could see the crazy contraption and he was able to watch on a screen (outside the room) the entire procedure.

As I was initially walking into the radiation room, there were two armed guards standing next to a door - come to find out a criminal was getting prepped for radiation as well. Ha, I guess they need treatment too, right?

So, to actually describe what happened today is kinda hard, because I didn't feel anything. I was actually about to ask when it was going to start and they were taking everything off. I did have a tight throat when I left, not sure if that was more of a mental side effect or a true side effect?? It definitely feels a little like a sun burn, but other then that, nothing.

After my radiation appointment, I had my lung Dr appointment. It started off with him saying basically that your lung function is off the chart. I was like, here we go....
After talking for a while, he understood what I was saying. There are a few things that may be going on, but he wants to do some further testing to figure it out. First, my side effects may be caused from a blood clot - but all my heart test aren't showing that. He is ordering some stress tests and more tests. Just trying to narrow down a few things. The stress test will determine if it is my heart, lungs or just being out of shape that is causing the shortness of breath. He wants me in ASAP, so do I, because I don't want the side effects (if any) from radiation to kick in. I am trying to schedule those appointments, but apparently the scheduler leaves at 3 pm, so I missed her?!? Go figure....

Simulation

Today was a little overwhelming. I can't quite pin a reason. I think it's because I am starting to feel good, starting to get into the office, run errands and just be normal....and then I get smacked back to reality that I am still not done.

Above are all the markings I had put on today. There was just so much go on, all these markings and before I knew it, they put another tattoo on me. This time, it's up on the side of my neck - a tough place to hide. With the face mask on my head, it was hard to see everything happening around me - machines moving etc. By no means was this painful, just a lot of action and not much explaining.

The biggest bit of information that IS important is, I will be going daily, starting Monday (1pm), through October 3rd. I am not sure what will happen after that, I am going to call Dr. Chen to see when I will go in for my next PET scan and visit with him. But I think for the time being, my weekly blood draws might stop...the less poking, the better!

I found a photo of someone in radiation - so take a look at this. It has everything except the wrist straps: http://www.thisidea.net/hd/images/radiation.jpg

Update

Not too much new to report, that's a good thing, right? This past weekend, Jon and Monica came down to visit. We had a great time, we were able to help mom unpack and had some good 'ole quality time together. Monica is about 14 weeks pregnant now, so she is just starting to show!

My main goal over this next week is to get rest, stay healthy and to put on a few pounds. Overall, I have maintained my weight really well - I think years of learning how to maintain, lose, and gain has helped me a lot. I have no idea what to expect next week and if I will have trouble eating?? I am planning on not being able to eat too much, so the extra weight will help me not get too weak.

I am trying to get my life back a little. I went into the office twice already, only for 2-3 hrs. Just to feel "normal" and to get a few things done. It's great to be there and things get done a lot faster for me there...but at the same time, I end up socializing. Everyone there has been so supportive, its great to see them all again. Hopefully through treatment next week I can keep coming into the office once or twice and build from there. I am anxious to get back to where I was, but my body also lets me know when I take it too far. What ends up happening is I crash....I tried to help mom unpack this weekend (don't worry, wasn't carrying anything). I was just unwrapping things, taking the dog out etc. It was a total of about 4 hours of trying to help. The following day I couldn't move. It was like the day after chemo feeling....so I definitely learned my lesson! I am trying to listen to my body cues and to sit down when I am being told to and to eat when I am told to....(this is my body telling me, not anyone else - I am subborn like that!)

I have my simulation on Friday as well as some blood work - next step is almost upon me!

Pre-Radiation Tests

I went it for my 2nd of 3 appointments before Radiation can "officially" begin. I was definitely filled with some anxiety, because I really had NO idea what was going to happen today. I thought I was just going in for a CT scan, but I also got fitted for a mask and got my tattoo.....

When I got there, got to get in the most flattering blue gown, the one that has your bottom flapping in the wind. Thank goodness I didn't have to undress waist down :) So I went back to a room with the machine for the CT scan. Then the mask was explained to me. The mask is like straight out of the Silence of the Lambs. I didn't know if I should start saying "Clarisse" or "Luke, I am your father"....Anyways, It went from mid skull to my chin. It's to protect my face from any of the radiation, because they are going high up on my neck. It got soaked in some warm water and then it was molded to my face. I guess I get to keep it when I am done, so I will get a picture up at that point.

So the mask was molded to my face, next step was to get my positioning on the table. I laid down with my head in a mold, my knees over a pillow kinda thing and my feet flat up against a board. Felt like the sit and reach a little from gym class. I had wrist straps on that were connected to the board at my feet. The idea is to keep my body as still as possible, especially my shoulders - don't want them in the cross fire! So just picture me, laying there with the crazy mask, arms tied down - seemed a bit nuts and I was trying not to bust out laughing.

Once in place, I had my CT scan. That only took about 4 minutes. They will use that along with my original PET scan I hand carried it to come up with the pattern and places they will radiate. Next was the tattoo. To be honest, I wasn't happy about this. I had always promised myself I wouldn't get one, unless it really meant something to me. My Grandpa Charles had a fishing hook on his arm.He always told us never to get one, because your skins grows as you get old...he would squeeze his arm together so we could make it out. So I had all these ideas in my head of what it would be like - how many dots/X's would they have to put on me, how noticeable would they be, etc. It was a quick process - he took some ink and a needle and just pushed it right into my skin. He decided I only needed 1, because I would be wearing the face mask and my skin was so light (guess it helps to be pale in radiation). He figured they would have no trouble seeing it.
Look carefully, you might not see it :) It's center chest, that little dot. I don't think my Grandpa would be angry about this one....



After the appointment, I went for my first haircut since treatment. I can't even try to describe how uncomfortable it is to walk into a hair salon with no hair on your head. It could have been more me then them. Either way, I got my hair all trimmed up and looking less sloppy!