Unfortunately for me, it's not a choice; I get to have all three! Tomorrow, Monday morning, I go in for a bone marrow biopsy, which means I am not allowed to eat before the surgery and have to be at the Children's Hospital of Philadelphia (CHOP) at 8:00 am. Hopefully they take me in early, and I get put under general anesthesia. The doctors then proceed to stick a huge needle into my back hip bones to extract the marrow, checking to see if the cancer has reached it there. Once they're done with that delightful business, they slap on some cushy bandages and wake me up! Now, this may be weird, but this may be the easiest test out of the three I'm to receive this week, and this test doesn't bother me in the slightest. I am totally used to gigantic needles being stuck into my backside while I'm out cold and I don't even know it. It takes maybe 5 minutes total, and I wake up pretty quickly and easily from anesthesia, so no bother. For all I knew, I was out for days, or 2 seconds, and even "now" means very little when I wake up. Normally I want to go back to sleep, but after a few shakes from my mom I'll be up. I can take a nap in the car ride home if I want. Then I'll be sore for a few days and be good as new later.
I get to return to CHOP on Tuesday for a CAT (or CT) scan and to receive the contrast intravenously for my MIBG scan scheduled for the next day. This is probably my least favorite day of the three. First of all, I again can't eat before the test. Instead, I get to drink an entire jug of apple juice mixed with contrast - half while on the way to CHOP at 6 in the morning, half when we get there. Now, this is not fun for anyone, but it's particular torture for me. I don't like to drink...well, much of anything, really. I drink maybe a bottle of water a day, and somehow I'm not dehydrated. I almost never get thirsty, although my mouth will get dry. That's pretty much the only reason I ever feel like drinking something - because my mouth is dry. Also, I can't stand ingesting that much of anything. Putting too much in my mouth at any one time makes me feel sick. I am the slowest eater in the world because of this. So, this contrast-drinking takes me double the amount of time it would take for most other people, and it causes me physical pain. This might be the only test you've heard of, and it's the only one I really truly dislike! The actual test itself is never much fun for me either. I lay down on a thin section of the machine (which, after a bone marrow biopsy, kind of hurts my backside) and put my arms above my head, just like I'm told to. The board I'm laying on then moves backward so that my head and body is in the middle of a large open circle, with the magnetic imaging strip moving through this circle. At times I'm told to "breathe in, and hold". Just when I think I can't hold it anymore without imploding, the soothing lady's voice comes back through the speakers telling me to "breathe". Then a nurse comes in to inject more contrast into me through my IV. This dye sends heat to my throat and puts pressure on my bladder, and if it goes too fast it can make me dizzy. I have to warn the nurse of this beforehand every time. These sensations last for a few minutes until the end of the test, when the nurse comes back and flushes my IV with heparin and saline. Then, finally, that test is done. In total, it probably takes about 20-30 minutes.
I then go to the Nuclear Medicine section of the hospital, where I meet with the MIBG scan nurses, most of whom I've known since I started going there more than 6 years ago. The "MIBG" in "MIBG scan" stands for something, but even after all this time I don't know what that something is! In fact, very few of the doctors do! I do know that it's a big long word that seems to travel down most of the page when typed out, and as much as I love big words, I don't much love big unpronounceable words that are rarely ever used in conversation. I also know that it is another scanning machine, similar to a CT scan, that uses an injected contrast. However, this one's different. The contrast, which is what the MIBG actually is, is a radioactive medicine that only sticks to neuroblastoma cells, and under the scanning machine, it makes them glow. Because it only sticks to neuroblastoma cells, MIBG scans are only given to neuroblastoma patients, so the nurses working there come to know the kids who receive these scans very well, since they're always the same kids. This also means that there are only a few of these machines in the entire world. The contrast has to be injected on a Tuesday because the medicine is flown in all the way from Canada on Monday, so I will always have MIBG injections on Tuesdays! The dye then has to stay in my body for a full 24 hours, so after the MIBG injection on Tuesday, we drive back home.
On Wednesday morning, we come back for the actual MIBG scan. Just like the CT scan, I have to lay on a thin board, but this time the scanning part - a large flat surface - comes towards me. They have to get it lined up perfectly, and it comes as close as it possibly can to my face without actually touching. This is not a good test for the claustrophobic! It's a longer test, so they actually let me watch a movie while I'm being scanned; before I get on the board, I always go through their racks and pick a movie to watch, load it into the player on the rolling TV cart, fast forward through the previews, and hit play. Since they know me well there, they often try to find movies just for me now. Most of their other patients are much younger (the average age for a neuroblastoma patient is 2), so most of their movies are little kid movies. I'm allowed to keep my head tilted for most of the scan to watch it. The scan takes about 45 minutes - 1 hour, so I never get to see the full movie; sometimes I'll go out and rent the movie after watching the first hour so I can see the ending at home! Sometimes I don't even make it that long: I end up falling asleep during the scan.
Then, an hour later, that's it! Done. No sweat. Wednesday is always the easiest. My mom and I will often go out to eat in Philly somewhere once that is done. If we have time, we may even be able to make it to a museum or something. I love going to Cosi, getting a delicious salad, and then walking next door to Urban Outfitters! The last time we went, I walked into both Cosi and Urban Outfitters without my wig, completely bald, and it took my mom half an hour to notice this. I felt great. I always feel great when these three days are done.
No comments:
Post a Comment