March 29, 2006

Zapped Again

I had my radiation treatment again today, a bit ahead of schedule. In case you are unaware, I have been posting daily updates on my page of the site. I will likely not comment further about radiation here because the information probably won't be changing much. If you want the updates, just flip over to my my page.

Posted by Andy at 04:46 PM to the News category | Comments (0)

March 28, 2006

Zapped

I got my first radiation treatment of 25 today. It took longer than they apparently will most of the time, because x-rays had to be completed to confirm the positioning of the marks they placed on me a week and a half ago. The x-rays get repeated every 4 to 6 sessions from what I understand. Speaking of marks, I look slightly like a whiteboard marked with a play designed to win a basketball game. If you want to know your role, just ask and I'll tell you which 'X' you are.

I came out of the treatment tired, and after about 15 minutes the nausea hit. I've had worse from medications designed to help me, so I didn't feel this was too big a problem, at least not big enough to stop me from eating regularly, including a sundae from the Daily Scoop up the road a few miles. I was also able to get through my osteopathy treatment, which helps to relieve some of the problems I get day to day, particularly during times like this. Hard lab tables have a high price tag for folks like me.

I timed my Netflix signup just right, so I was able to pop in Serenity a few minutes after I walked in the door, which brings me to now. Coulda been better, but coulda been a lot worse I figure. Five weeks of this is a lot, but I'll do it, and hopefully watch some fun movies and hang out with some friends and family along the way.

Posted by Andy at 11:28 PM to the News category | Comments (1)

March 16, 2006

Setup Complete

I am home from my setup appointment. The whole thing took a bit over an hour, in part because they had to scan me twice. The first scan didn't go low enough to be complete, so they reset and started over. The CT table was rock hard, and by about 10 minutes in my limbs were all going numb or were numb, as I was not supposed to move at all. It is hard to relax into nerve pain, but it's all over now and the actual treatments will be much shorter and later in the day. At the end of the scan, I was marked up with magic marker in three spots around my midsection, then injected just beneath the skin in each spot with a little bit of dye.

I go in for radiation treatment #1 on Tuesday, March 28th at 2:45. From that point on I guess I will be there every day for a month and a week.

Posted by Andy at 11:57 AM to the News category | Comments (2)

March 15, 2006

I Met the Second Radiation Oncologist

Today I had my appointment with Dr. Oh up at the Tate Center in Glen Burnie. After what appeared to be a sketchy beginning (the first nurse was not familiar with the names of any of my prior surgeries), everything straightened out nicely, and I plan to undergo my radiation treatments at this facility instead of at Hopkins. The difference between 15 minutes and an hour one-way in a car is pretty huge for me.

Dr. Oh also reinforced the radiation option over chemotherapy or observation, and declared a little hard area under the skin at the base of my abdomen to be nothing problematic. This doc has me slated for 25 sessions, so that means 5 weeks instead of 4. I still think tne shorter distance will help me more despite an extra week of treatment.

I go in tomorrow at 8:30 AM (ouch) to get my preliminary scans done so they will then know precisely where to radiate me. I expect to start actual radiation after another week and a half or so have passed, because I need to get fertility testing and banking handled prior to the start of the radiation process. Dr. Oh says that I should expect poor results on that test, which I must admit is a blow. I am experienced with having dreams put in serious jeopardy, but at the same time, I don't think it will ever get any easier to handle it.

Right. So, setup happens tomorrow followed by about a week and a half off, followed by 5 weeks of radiation therapy. I shall keep you posted as always.

Posted by Andy at 07:52 PM to the News category | Comments (4)

March 08, 2006

Appointment Scheduled

I have an appointment to see a doc in the new Tate Center (a branch of what was called North Arundel) next Wednesday at 3. That gives me a few days of break, which I won't argue against, and also a second opinion.

I also got some more behind the scenes help today from a web guru who I can't credit for what you might call legal reasons, for lack of a better term. If you're reading, thanks yet again for the help!

Posted by Andy at 10:22 PM to the News category | Comments (1)

March 06, 2006

I Met the Radiology Oncologist

Today was my meeting with radiology oncologist Dr. Song. We reached Hopkins at 2:30 and left at about 5:30. Once I got back to the room we talked at length with and I was examined by a resident with a couple of years left in his training. While I appear to be clean of the seminoma as far as blood testing and CT scanning can determine, my case is atypical due to the beta HCG level in my first blood test. This guy led us to believe that I would in fact not be getting radiation and would instead undergo chemotherapy, but he was overridden by Dr. Song 45 minutes later. I will be getting radiation, 4 weeks worth, 5 days a week, starting probably in 2 and a half or 3 weeks.

We discussed the possibility of having it done closer to home, perhaps at the Tate Center up in the North Arundel Hospital complex, but the Hopkins folks weren't really able to help us much in that regard in terms of a recommendation or with the transfer of information. I may have to go through this all over again up there if I want to avoid the 45 minute or hour travel time to Hopkins every day for a month. We were given a folder full of information though and I can at least check and see if they have the same type of equipment, which seems to me the most crucial element in something like this.

Doctors at every step have also highly recommended that I go to a fertility doc for testing and also to have sperm banked in case the radiation treatments render me sterile. I was not given any kind of numbers regarding the chances of this occurring, but obviously this isn't something to be overlooked regardless of the odds. I plan to get this done as well, but until we know if we're shifting to a new facility or not, I won't know just where I'll be going. The annoying thing is that if I wind up at another instituation, the Hopkins people won't really be involved anymore. That seems sort of unecessary to me, but that's the way it is.

I also learned that I'm now considered at high risk for getting this again on the other side, with maybe a 1 in 20 chance of that happening. I got this info from the resident though, and he may have been a little alarmist about the numbers. I was told to perform a monthly self-exam so as to catch anything like these as early as possible. I'm pretty sure the surgical procedure would be drastically different were this to occur, so I'm just hoping I will never have to worry about that. I had to make a point of asking how to do the self-exam or I'd have no more ability to do that now than I ever did. This makes me wonder what else I'm supposed to be checking that never gets mentioned, despite my significantly higher rate of doctor's appointments than your average citizen. Do yourselves a favor and ask your doctors about what you should be checking. You may never know otherwise.

Dr. Song's nurse was especially helpful and friendly. The folks in the oncology center were slightly more disposed to take seriously my CFS and NMH problems as well, though they really had no idea how to help me with regards to that information. I asked the nurse to convey to the appropriate people my concerns over the exam room chairs, and I feel confident she will do so. She understood what I was saying, and hopefully she and I can help other patients down the road with this little bit of "proactivity", if that is in fact a word.

The side effects brought to my attention were the possibilities for nausea (diarrhea, etc. included), a probability of fatigue, and an increased risk for other cancers down the road ranging from a 30% to 100% increase compared to a non-radiated individual. I think this might sound worse than it is considering the risks of things that aren't commonly statistically labeled in this way, like driving recklessly or eating an imbalanced diet. On the plus side, I will be checked frequently for all sorts of things from here on out, so that might actually improve my odds over the guy standing next to me in some ways. The con of course is that all of this is very tiring for me.

One thing I should note is how much my parents are helping me do all of this. They're making all the phone calls, keeping all of the paperwork, filling out forms, taking notes, driving me all over, and representing me as needed on the phone and in person when necessary. Without them I would be hard pressed to have even had the surgery by now, let alone try to move my radiation treatment to another institution.

So, there you go. 4 weeks of treatment for 5 days a week barring an about-face if I have to get a second assessment done in a different location. If any of you have info that can help me out I am happy to talk with you. Actually, I'm happy to talk to you if you don't have any info as well, so feel free to give me a ring, add a comment, or send an email. My email address is available at the bottom of every page on this site.

Posted by Andy at 08:42 PM to the News category | Comments (1)

March 03, 2006

Good Report

I just got home from my appointments at Hopkins. There was again some waiting involved, but it was not as bad as before. So, to the meat of it... My CT scan was normal, and my bloodwork was also normal, so though I cannot officially be declared "cancer free" until after radiation therapy, I'm close if not there now. Radiation will take place in order to fry any microscoping remnants that may or may not have spread into the lymph nodes in my back.

I see Dr. Song, a radiologist, on Monday and am going to investigate the possibility of having it done closer to home. There is a healthy difference between a 20 minute drive and an hour drive, so I am hoping it will not be a problem for that to occur. I may also find out at this appointment how often I need to be checked over the next five or so years. The urologist wants to see me back in a year, which is substantially later than I had imagined from my reading. It would certainly be nice if I didn't have to add bimonthly appointments to my doctor appointment lineup, so I am hoping that'll be enough. It's hard to complain about a once a year appointment.

So, things are looking good. Radiation isn't going to be a walk in the park with my existing health problems, but I have a definite light at the end of the tunnel to keep me moving along. Thank you all for your continuing support. I'd like you all to think about an idea I had over the past couple of weeks that I will describe below.

When all of this is over, I would really like to get a big group of family and friends to go to the aquarium, natural history museum, or both over a few weeks, and I would further like to not have to be the organizer of it all. I have not been to either place since I was a little kid and I think this would be a great way to move out of a rough situation. I would need a wheelchair to last through the day, but I would be able to handle that concept I believe. I think it would be a lot of fun to get whole families in on it, kids and all, and if people drove separately some could leave earlier than others if they needed to do so. This could happen as a big family and friends arrangement, or we could set up a family day in one place and a friends day in the other. I am confident everyone would get along great regardless of which way we chose to do it. So, send me your comments with your thoughts on this idea. It's too early to figure in any dates because I don't know how long radiation goes or how whipped I will be on account of it, but that can happen once a few weeks have passed.

Posted by Andy at 07:10 PM to the News category | Comments (6)