Good times in the ER.

See how smart I was to wear my pajama pants? And they almost matched the hospital gown!

Every day is an adventure now!

Well yesterday I decided to get off my butt and go out to target since it was my day off and I needed a few things. However, my car had been sitting in the parking lot all day just getting hotter and hotter. For a normal person, this would be no big deal. Thinking I’m normal, I just get in and drive to the target (there is a new one about 7 minutes away).

By the time I get there, I am having a flush and palpitations and generally feeling crappy. But now when I feel this way, I get sort of panicked too, like something could really be wrong with me, because frankly, something could really be wrong with me. It all snowballs into a bad thing.

I get to target and I’m trying to park so I can run in to the cold air. Dude in front of me is driving so slow that I panic even more. I finally go around him and park in one of the handicapped spots and put my flashers on. I run into the store, fairly certain that I am going to pass out, but I just want to pass out in a public place so someone can call 911.

I’m lightheaded and drymouthed. I head to the water fountains not for a drink but just to get some liquid in my mouth. I compose myself for a second and call Rod to come pick me up because I can’t drive. I wait a minute or two more, then head out to my car to move it from the handicapped spot. As soon as the heat hits me though, I think better of it, thinking the same thing will happen again. I turn around to head back in, and a lady with a child in her cart says, “can I asked why you parked in the handicapped spot?”

I say “I was having a carcinoid attack and I was afraid I was going to pass out.” “What does that mean?” “I have carcinoid cancer, and I have these tumors on my liver, and they release hormones which make me feel like I am going to pass out. I already called my boyfriend and he is coming to get me. I was coming out to move my car but I thought I was going to pass out again so I was going back in.”

She was pretty much stone faced the entire time, as tears are streaming down my face while I try to explain that I would never park there but it was an emergency. She finally said, “okay, go back in the store” but I’m pretty sure she reported the entire situation to the police.

Anyhow, Rod comes to get me and we head back home, but I just wasn’t recovering well. I felt woozy, nauseous, anxious, restless, basically just not right. I started telling Rod all the things he would need to tell the people at the hospital in the event that I passed out. “Give me this med, but don’t give adrenaline, call this doctor for further instructions, etc, etc.” Then I tell him to put his shoes on and get my stuff ready. Then I start acting like I don’t want to go to the hospital, procrastinating for another 30 minutes to see if I would feel better. I didn’t, so we went, and as usual all my vitals and bloodwork is normal so basically there is nothing they can do for me.

I need to be on a drug called sandostatin, but I can’t get anyone to give it to me! The Doc at Penn will eventually give it to me, but in the mean time I can barely leave my house without fear of such an event happening.

BLARGH!!!

Just a day, like any other day.

Except today at 1:15 I have an appointment with my doctor to discuss the results of my Octreoscan and my CT scan.

Those of you who know me and my doctor know that she is not a fan of calling me promptly. I finished my scan at 8:30 am. My doctor’s office called at 4 pm….less than 8 hours after I finished my test…to tell me to come in on Friday for an appointment.

I’m thinking it’s likely bad news, but who knows. I’ll keep you posted.

Octreotide Scan!

Went for my radioactive injection this morning. Have to go back at 3 for them to take the pictures.

I was talking to the lady who is doing the study, and she’s like, “Okay now, where are we looking for these tumors?” I was like “I don’t know, I had a CT scan but my doctor wouldn’t give me the results.” She was like “WHAT?!?!? I would be very annoyed about that! How are we supposed to know where to look if she hasn’t told you anything!?!?!” LOL. I told her look in the liver and intestines, that was most likely.

She was also quite impressed with her needle stick, to the point where she drew some blood into the needle and was like “WOW! Look at that great blood return!” I’m like, no thanks!

Good times!

Drama Queen

So yesterday was about a week since my CT scan. As you may know, my doctor takes a while to call me back about results. I decided to pull the move that I pulled a few weeks ago…just go to the office and ask for a copy of the report. I head over there around 2 pm, same time as the last time I did it.

I walk in, and ask for a copy of the report. Of course, they have to scramble to find my chart…nobody ever seems to know where it is. The girl finds it and says “Has the doctor gone over the results with you yet?” I say no. “Oh. I can’t give you a copy of the report until she has talked to you……….and she’s not here today. Do you want us to send it to another doctor?”

Oy. She then tells me that maybe I can get a copy from the Hospital, but I already know that they don’t release results directly to patients. Important to note is the look on her face as she keeps looking at my chart and telling me she’s sorry she can’t give me the results. I know I’m probably reading into it, but her face seemed to say that the results were not good. And really, if everything was fine, I think she would have told me.

CT scan

Had my CT scan this morning. I had to drink some Barium, which wasn’t quite as gross as I thought it would be. Actually, it was totally gross, but I didn’t throw it up so I think that’s why it wasn’t as bad as I thought it would be. Man, you really have to drink a LOT of that stuff.

Anyhow it was early, and I had a few flushes while drinking it, but nothing out of the ordinary. Toward the end, I got up to go to the ladies room before the actual CT scan. When I went to the ladies room and looked in the mirror, I saw quite a sight!

I was flushed, but in a weirder way than usual. My face was splotchy, with bumps like measles under my eyes. The area around my eyes was very red too, more so than in a usual flush. I didn’t think it was a reaction per se from the barium. More like a flush with a barium tinge. When I opened the door, the nurse was standing there waiting for me, and I gave her quite a fright too. I told her that I had carcinoid syndrome, and that although this was a weirder flush than usual, that I would be fine. She asked if I was having trouble breathing or anything like that, but I told her no. I told her we could still do the scan, but we should probably skip the IV injection part of the scan. She agreed.

I went to to change into the hospital gown, and by the time I saw her again (about 3 minutes later) the weird flush was gone. She was amazed.

Did the CT scan, went home and took a nap, and that’s all.

Kristin: educating the world about carcinoid one awkward flush at a time.

argh

I finally called the doctor today to get the results of my chest xray. Of course, they told me to call the 800 number. Oy. Why does it have to be such a pain to get an answer. Even if I wait the 14 days that they tell me I need to wait, they still never post the results on the network. That’s some serious bull. In order to be seen by any of the carcinoid specialists, I have to a) have an actual diagnosis and b) have tons of imaging and likely a biopsy done. If I don’t have these things, I can’t even start treatment, so you can imagine my frustration with the snail’s pace we are moving at.

arghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

My arm today

Chest x-ray and no sleep

Let’s hope this isn’t what mine looks like!

I guess all that napping yesterday really messed me up, because I could not get to sleep last night. Last time I saw the clock it read 4:38, and the next thing I knew my alarm was going off to get up to go to for my x-ray.

I arrived at 9 am, registered at the desk, they took me right at 9:15 and I was out of there by 9:19, in spite of my inability to get in the proper position for the x-ray. It didn’t help that I got the trainee x-ray tech, but that’s just about my luck these days. Don’t know when I’ll get the results, but knowing my doctor, it will be at the most inconvenient time!

Time for a nap!