Now where are my superpowers? Damn, I forgot to bring a spider or something to bite me. Maybe I'll still mutate. I'll settle for Not As Sick Anymore Man. Hell, I'll take Not Any Worse Off Man. I'll even be a sidekick as long as there's no net negative effect.
Everything went fine. I rode to IU with my parents and stayed with them for a bit, then took the People Mover over to Methodist for my thing. I had to wait a little bit because one of my doctors was running late. It wasn't a big deal, I just dozed off in the waiting room. My neurosurgeon basically said the plan was good and asked if I had any questions. I was comfortable with the radiosurgery stuff, but my jaw is bugging me and asked him to take a look. He didn't see anything obvious and recommended I see a dentist. The radiation doc came in shortly after, went over the procedure, and was there to answer any questions. I still didn't have any. I then went back to the room with the machine, lay down, and got my head fastened into the mask. They did a couple quick X-rays, then started the radiation. There were 4 bursts, arcs as they're called from the Novalis machine, each lasting a couple minutes. I couldn't really see much through the mask, and just kept my eyes closed anyway. I didn't really feel anything, other than the table moving. I saw a few flashes of light during one arc, probably as some of the radiation beam got close to my retina. I smelled a hint of bleach a bit, too (still do off and on a little). It took maybe 15 minutes on the table.
Afterward, they went over potential side effects (sore throat, headache, fatigue, etc.), all minor, but said to let them know if anything was unbearable or lasted longer than a couple days. I had the radiation doc look at my jaw and he also referred me to a dentist. I was good to go, just tired from not sleeping much and from taking a valium earlier in the morning to help with my nerves and wooziness. One of the technicians gave me a I for completing the procedure, which was nice. I'll follow up in 3 months with an MRI and see how things are progressing.
I matriculated back to IU via the People Mover to be with Mom. She'd be in recovery for about an hour and was sleeping. Her thing went well. They ended up taking out the 2 stents that were there and put in 3 new ones. She won't have to go back until March to get those out. Hopefully they'll stretch out her bile ducts enough, but, if not, they'll do it again with either more stents or bigger ones. We then just waited for her to wake up and see how she did with some stuff to drink. Once she was relatively alert, she was discharged and we went home. She's doing well, just a bit icky and tired, which is to be expected.
I'd planned on sleeping after eating something, but got to messing around online. I caught up on my usual sites, then tried to find cheap/free dental care. I'm still looking into it, but if anyone has any suggestions, let me know. I have no dental coverage at present, and no money, really, either, but I have to figure something out. I'm due for a visit to the dentist, anyway (it's been awhile because of the money/insurance stuff), but my jaw is killing me. It's not as bad now, but I think I'm just getting used to the pain. My teeth all seem fine to me, and none of them hurt or anything, but my jaw feels misaligned and it's a bitch to chew. I can't think of anything I did, other than sleeping with my mouth open because of my bad sinuses and maybe rolling over on it wrong or something. Hopefully I can find a way to see a dentist and at least get a check up.
Now is the hard part, just waiting. The procedure was a bit anticlimactic, which isn't necessarily a bad thing, but I was expecting a little more fanfare, I guess. Again, I'm happy to have done something, but I hate just sitting around and not doing anything else. I understand that's how this works, but that doesn't mean I have to like it. At least it should be a relatively busy 3 months with the holidays and everything.
Thanks to everyone for the well wishes and support! It means a lot!
-B
Thursday, November 11, 2010
Tuesday, November 9, 2010
Radiosurgery...
I know it's been awhile since I've posted. It's just been a mix of being tired and woozy and stressed and letting that get me out of the habit of writing. The idea is to start posting daily, or at least regularly, again. There's a lot to talk about, and much to catch up on, but I'll focus on radiation stuff this time.
So I go in on Wednesday, November 10th, for radiosurgery (targeted, radiation--think short term lasers instead of extended periods flashlights) at Methodist Hospital. They'll be using a Novalis machine. I did my scans and had my mask made a couple weeks ago. The doctors will basically program the machine to target the tumor based on the scans. The mask helps keep me still and lets the machine know where I am. It will be a stereotactic procedure, meaning it's just one dose. There was talk of maybe fractionating the dosage (breaking it up), but they're confident that a single dose will work best. I'll be awake, and the procedure only takes about 20 minutes. The prep work and going over everything beforehand will take longer.
For awhile, I thought I'd have to travel to get radiation treatment. The plan from Phoenix was to use a Cyberknife machine, but it would have to be the latest model. There's an older version here at IU, but it's range isn't enough to get both my head and neck like the newer one could do. I was under the impression that the new Cyberknife machine was the only (or at least the best) tool to treat my tumor. It turns out that Novalis and Cyberknife are just brands, but they do the same basic things, just in slightly different ways. I was worried for awhile that I may have to settle on lesser equipment because of geography/insurance/money issues, but that's not the case. I'm not sure why I was confused about things before. I guess I misunderstood some of what I was told, plus I didn't ask the right questions. I'm content with this part of the situation now.
I'll probably be a bit tired, maybe a little queasy, and have a sore throat right after the procedure. That should only last a few days if I feel it at all. I'm not too worried about it. I'm not doing a whole lot as it is, anyway. Longer term side effects would all stem from tissue damage, pretty much, mainly the nerves near the tumor.
I'm still not big on doing radiation. It does seem to be the consensus next step, though. And after discussing it with my doctors, I'm not as worried about the risks as I was before. But there are risks. I'm mainly worried that healthy tissue will be adversely affected. The point of radiosurgery is to minimize those risks, beaming the radiation from multiple angles so that no single point is overly exposed. But not only is there that healthy tissue surrounding the tumor, the tumor is growing from and right next to some important nerves and blood vessels. I'm mainly worried that the radiation will damage those. I'm not terribly concerned about any future cancers from the radiation. It won't metastasize the benign tumors I already have, but there's a slight chance it could cause something else down the road. Being a relatively new technology that's used on very sick people, there's not a lot of long term data available. We'll see, I guess.
I am happy to finally be doing something proactive. I'd rather try something that doesn't work than just sit here and waste away, doing nothing. Aside from the potential to damage healthy tissue, I'm mainly worried that it won't do much of anything. Ideally, it will shrink the tumor significantly to where it's not an active problem. It may have already caused permanent damage to the nerves, so I may get no relief from the wooziness, but we won't know until the tumor's gone or much smaller. That is an unlikely result, but possible. At the very least, we're hoping that radiation stops further growth. Moderate shrinkage would be a realistic goal. There's also the possibility that the tumor's consistency will change, hardening it up and making it less gooey, which would make cutting it out easier if that's what we decide to do later. More surgery is an option depending on how I take to the radiation. The worst part about radiation is that it takes awhile to work. It could be years for the full effect to be seen, and probably months before anything is noticeable.
I've been more anxious and nervous about getting this done that I would have expected. While always mindful of the risks of any procedure, and hopeful that those risks are minimized as best as can be done, I'm usually pretty even keeled about medical treatment. The procedures are supposed to be solutions to problems, and I like solving problems. I was excited for surgery last year. I don't know...I think that just the general factor of the unknown and unknowable with this is what makes me nervous. Surgery is more straightforward: cut out the bad stuff and try to leave the good stuff alone. If you nick something, you know you nicked it and then you deal with that. With radiation, you zap the bad stuff, hoping the good stuff doesn't get too damaged in the process, then you wait to see what happens. I don't like to wait.
Mom is having some stuff done the same day. They put in some stents to help make a better connection between her new liver and her bile ducts a couple months ago, and now they'll go in to take those out. I'm more worried about her than I am me. I just have to lie still for a little bit. They have to navigate inside of her body to tweak some stuff that's already sensitive. She has to be at the hospital at 6AM for an 8AM procedure. I'll go with her and my step-dad when they leave, hang out with them for a bit, then take the People Mover over to Methodist for my stuff, which starts at 8:30AM. I'll talk with the doctors ahead of time, get everything situated, then lie there and let the machine go to work. Once I'm done, I'll get a hold of my step-dad and he'll pick me up when he has a chance once mom's done. If I'm feeling OK, I'll just take the People Mover back from Methodist to IU.
Thanks for your support! I'll let you know how it all went once I'm feeling up to writing. I'm sorry I've not done a better job of keeping you all up to date. It just gets hard when I feel extra crappy, plus being busy setting everything up, dealing with SSI ridiculousness and occasionally having something to do. I promise I'll try to do better. Thanks again for sticking with me. It helps more than you know.
-B
So I go in on Wednesday, November 10th, for radiosurgery (targeted, radiation--think short term lasers instead of extended periods flashlights) at Methodist Hospital. They'll be using a Novalis machine. I did my scans and had my mask made a couple weeks ago. The doctors will basically program the machine to target the tumor based on the scans. The mask helps keep me still and lets the machine know where I am. It will be a stereotactic procedure, meaning it's just one dose. There was talk of maybe fractionating the dosage (breaking it up), but they're confident that a single dose will work best. I'll be awake, and the procedure only takes about 20 minutes. The prep work and going over everything beforehand will take longer.
For awhile, I thought I'd have to travel to get radiation treatment. The plan from Phoenix was to use a Cyberknife machine, but it would have to be the latest model. There's an older version here at IU, but it's range isn't enough to get both my head and neck like the newer one could do. I was under the impression that the new Cyberknife machine was the only (or at least the best) tool to treat my tumor. It turns out that Novalis and Cyberknife are just brands, but they do the same basic things, just in slightly different ways. I was worried for awhile that I may have to settle on lesser equipment because of geography/insurance/money issues, but that's not the case. I'm not sure why I was confused about things before. I guess I misunderstood some of what I was told, plus I didn't ask the right questions. I'm content with this part of the situation now.
I'll probably be a bit tired, maybe a little queasy, and have a sore throat right after the procedure. That should only last a few days if I feel it at all. I'm not too worried about it. I'm not doing a whole lot as it is, anyway. Longer term side effects would all stem from tissue damage, pretty much, mainly the nerves near the tumor.
I'm still not big on doing radiation. It does seem to be the consensus next step, though. And after discussing it with my doctors, I'm not as worried about the risks as I was before. But there are risks. I'm mainly worried that healthy tissue will be adversely affected. The point of radiosurgery is to minimize those risks, beaming the radiation from multiple angles so that no single point is overly exposed. But not only is there that healthy tissue surrounding the tumor, the tumor is growing from and right next to some important nerves and blood vessels. I'm mainly worried that the radiation will damage those. I'm not terribly concerned about any future cancers from the radiation. It won't metastasize the benign tumors I already have, but there's a slight chance it could cause something else down the road. Being a relatively new technology that's used on very sick people, there's not a lot of long term data available. We'll see, I guess.
I am happy to finally be doing something proactive. I'd rather try something that doesn't work than just sit here and waste away, doing nothing. Aside from the potential to damage healthy tissue, I'm mainly worried that it won't do much of anything. Ideally, it will shrink the tumor significantly to where it's not an active problem. It may have already caused permanent damage to the nerves, so I may get no relief from the wooziness, but we won't know until the tumor's gone or much smaller. That is an unlikely result, but possible. At the very least, we're hoping that radiation stops further growth. Moderate shrinkage would be a realistic goal. There's also the possibility that the tumor's consistency will change, hardening it up and making it less gooey, which would make cutting it out easier if that's what we decide to do later. More surgery is an option depending on how I take to the radiation. The worst part about radiation is that it takes awhile to work. It could be years for the full effect to be seen, and probably months before anything is noticeable.
I've been more anxious and nervous about getting this done that I would have expected. While always mindful of the risks of any procedure, and hopeful that those risks are minimized as best as can be done, I'm usually pretty even keeled about medical treatment. The procedures are supposed to be solutions to problems, and I like solving problems. I was excited for surgery last year. I don't know...I think that just the general factor of the unknown and unknowable with this is what makes me nervous. Surgery is more straightforward: cut out the bad stuff and try to leave the good stuff alone. If you nick something, you know you nicked it and then you deal with that. With radiation, you zap the bad stuff, hoping the good stuff doesn't get too damaged in the process, then you wait to see what happens. I don't like to wait.
Mom is having some stuff done the same day. They put in some stents to help make a better connection between her new liver and her bile ducts a couple months ago, and now they'll go in to take those out. I'm more worried about her than I am me. I just have to lie still for a little bit. They have to navigate inside of her body to tweak some stuff that's already sensitive. She has to be at the hospital at 6AM for an 8AM procedure. I'll go with her and my step-dad when they leave, hang out with them for a bit, then take the People Mover over to Methodist for my stuff, which starts at 8:30AM. I'll talk with the doctors ahead of time, get everything situated, then lie there and let the machine go to work. Once I'm done, I'll get a hold of my step-dad and he'll pick me up when he has a chance once mom's done. If I'm feeling OK, I'll just take the People Mover back from Methodist to IU.
Thanks for your support! I'll let you know how it all went once I'm feeling up to writing. I'm sorry I've not done a better job of keeping you all up to date. It just gets hard when I feel extra crappy, plus being busy setting everything up, dealing with SSI ridiculousness and occasionally having something to do. I promise I'll try to do better. Thanks again for sticking with me. It helps more than you know.
-B
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