As you recall from my previous blog, I had mentioned how wonderful the brain tumor was doing, which I would say was pretty bad news. I had also mentioned that I got a surprise e-mail last Monday, in which I was holding out on everybody just in case it fell through. Well, as you might have guessed by the title, something really good has happened. When I first found out about my condition in early February, I had gotten several e-mails from people who saw a new treatment on one of those CBS health channels relating to the type of brain cancer I had. Being the proactive person that I am, I immediately e-mailed and phoned the three contact people that they had listed for this study. I was fortunate that one of the three replied to me. At that time, she explained the guidelines for getting into the trial in which I did not qualify. They were looking for people who had already gone through a minimum of six weeks of chemotherapy and radiation therapy, plus after all that, the tumor must still be progressing. So obviously, I had to wait until I had an MRI done on May 5, in which I got the news that the tumor was spreading. So when I called and e-mailed after I got the results, I was informed that the clinical trials were closed as of last week and that I would have to wait until the FDA approved the procedure to get this done. That was something that I really did want to hear. But because I kept in constant contact by phone and e-mail, plus I gave her my blog info, I was one easy person to remember. So on that last Monday when I said there may be a surprise, it was because she contacted me, saying that someone dropped out so that there was one opening left so she gave me first crack at it. Oh by the way, I said yes.
From that Monday when I found out to that Friday before Memorial Day weekend, it was a long week of being on the phone and e-mailing to make sure all my records were transferred over to the other hospital. It was amazing on how difficult this was. I had two wonderful people working for me out of each hospital who really put a lot of time and effort into making sure all the information was forwarded but the world of computers were trying to sabotage me. From Tuesday through Thursday the info was e-mailed numerous times but wasn't getting through due to hospital firewalls, and data size and who else knows what. So we had to go back to using the old fax machine, but that didn't help get the MRI info over there. So we had to FedEx the MRI discs which were overnighted last Thursday so they could review them on Friday to see if I qualified based on the size and growth of the tumor. Of course I got a call about three in the afternoon saying she didn't receive the package yet and needed the routing number. They found the package about 3 PM and she rushed it to the doctor who immediately examined and measured the MRI's, and that is when I finally got the news that based off the info they had so far, that I would be an excellent candidate. Boy, when I finally got the news, I was as giddy as a young boy who accidentally saw his first boobe. It took me several hours to wind down.
I'm flying out to Cleveland on Memorial Day at about 5:30 PM and will have some preliminary testing done on Tuesday and Wednesday. The only thing that can prevent this from happening now is if the new MRI that they take on Tuesday shows that the tumor has grown beyond the scope of the study. But hopefully, since it will only be three weeks from the previous MRI that this will not be the case. If everything goes according to plan, I will have the procedure done on Thursday or Friday of this week, depending on how fast they fly in their team that does this procedure. Recovery time is minimal and hope to be back by the following Monday.
I have to admit, this is the first time that I have had a craving to visit Cleveland, but I think it will become my kind of town.
If anyone wants more information on what the procedure is all about, the website is www.monteris.com and the procedure is called autolitt.
POGO
Monday, May 25, 2009
Monday, May 18, 2009
Brain Tumor and Pogo are both doing well
Okay, is that title a misprint or is it a play of words. Actually, it is an extremely accurate statement. As far as I go, I still feel very good physically and mentally. My left hand really hasn't improved much, but I am able to golf, play softball, and tennis. I also found out that if I take shorter strides, I can run faster and not fall down.
On May 5, I had an MRI done and was told of the results on May 8, by my chemotherapy doctor. The area where I had the surgery looked good, however the deeper areas where there were two smaller tumors had gotten significantly bigger. I guess this is a fine example of how much of our brain that we actually use, because I really haven't noticed the difference. Obviously, the doctor was concerned and I do have to admit that it didn't make my day but that certainly didn't change who I am, or my demeanor. I think everyone was a little surprised, because they said don't expect much change in the MRI as far as improvement, but didn't expect to see so much growth from the tumor, ergo the tumor is doing very well. He immediately called the other two doctors involved in the case and moved up the appointments. So it is extremely safe to say that Plan A, did not work and now we formulate Plan B.
I was able to see the radiation oncologists that same day. He wasn't quite as panicked as the chemo doctor. He mentioned that the tumor growth had a definite margin around it which is a good thing for his next plan of attack. Enter the Cyberknife. What a cool name that is, and it sounds invasive. What it actually is is a robotic real-time radiation device that sends a high dose of radiation to the tumor cells over a two-hour session and is accurate to within 2/10 of a millimeter. You can probably Google this procedure and get more info. We got the info packet and got to see it. I would literally be in and out of there in about two hours with no side effects. They are presently trying to expedient this process with my insurance company, so hopefully it will be done in the next few weeks.
On the following Tuesday, I saw the Neurosurgeon,, who I affectionately call Dr. Doom. I think he is an excellent surgeon, since the MRI looked good in the area he worked on, and I never had any postoperative pain, but he is no Knute Rockne. If you are up by three touchdowns going into halftime and he gave the big speech in the locker room, you would probably lose the game by 50 points. He is extremely pessimistic and literally gives me no hope. I think the only speech he ever memorized was a quality-of-life speech. If I hear that speech one more time, I am going to have to rent a gun and either shoot him or myself. Being a typical surgeon, he may think that if you can't cut it out, then it can't be cured. The good news is that I mostly deal with the other two doctors from now on.
If you noticed the delay between the dates of this news and when I actually did the blog was because I wanted to make sure I informed my kids so they didn't have to find out about it from the blog or from other people. I also didn't want to ruin Mother's Day, or my daughters wedding shower. They seemed to handle the news okay, and a lot it, hopefully had to do with my positive attitude and never changing personality.
POGO
PS I got a surprise e-mail last night, which I'm not going to mention at this time. But if it pans out, I will let everyone know as soon as possible. Just a little something to keep people guessing.
On May 5, I had an MRI done and was told of the results on May 8, by my chemotherapy doctor. The area where I had the surgery looked good, however the deeper areas where there were two smaller tumors had gotten significantly bigger. I guess this is a fine example of how much of our brain that we actually use, because I really haven't noticed the difference. Obviously, the doctor was concerned and I do have to admit that it didn't make my day but that certainly didn't change who I am, or my demeanor. I think everyone was a little surprised, because they said don't expect much change in the MRI as far as improvement, but didn't expect to see so much growth from the tumor, ergo the tumor is doing very well. He immediately called the other two doctors involved in the case and moved up the appointments. So it is extremely safe to say that Plan A, did not work and now we formulate Plan B.
I was able to see the radiation oncologists that same day. He wasn't quite as panicked as the chemo doctor. He mentioned that the tumor growth had a definite margin around it which is a good thing for his next plan of attack. Enter the Cyberknife. What a cool name that is, and it sounds invasive. What it actually is is a robotic real-time radiation device that sends a high dose of radiation to the tumor cells over a two-hour session and is accurate to within 2/10 of a millimeter. You can probably Google this procedure and get more info. We got the info packet and got to see it. I would literally be in and out of there in about two hours with no side effects. They are presently trying to expedient this process with my insurance company, so hopefully it will be done in the next few weeks.
On the following Tuesday, I saw the Neurosurgeon,, who I affectionately call Dr. Doom. I think he is an excellent surgeon, since the MRI looked good in the area he worked on, and I never had any postoperative pain, but he is no Knute Rockne. If you are up by three touchdowns going into halftime and he gave the big speech in the locker room, you would probably lose the game by 50 points. He is extremely pessimistic and literally gives me no hope. I think the only speech he ever memorized was a quality-of-life speech. If I hear that speech one more time, I am going to have to rent a gun and either shoot him or myself. Being a typical surgeon, he may think that if you can't cut it out, then it can't be cured. The good news is that I mostly deal with the other two doctors from now on.
If you noticed the delay between the dates of this news and when I actually did the blog was because I wanted to make sure I informed my kids so they didn't have to find out about it from the blog or from other people. I also didn't want to ruin Mother's Day, or my daughters wedding shower. They seemed to handle the news okay, and a lot it, hopefully had to do with my positive attitude and never changing personality.
POGO
PS I got a surprise e-mail last night, which I'm not going to mention at this time. But if it pans out, I will let everyone know as soon as possible. Just a little something to keep people guessing.
Friday, May 8, 2009
Happy belated 1st Birthday, Parker
On May 1, my one and only grandson, Parker, turned the big one-year-old. And what fun thing would you like to do on your birthday. How about going to the doctor for your first annual checkup and getting two shots. Does this kid know how to party or what. He did pass his physical with flying colors(hmmm-flying colors sounds a lot like me), and he tilted the scale at a whopping 23 pounds and is 29 3/4 inches tall. I don't think he's ready for the NBA just yet.
By the way, the belated first birthday is for the blog and not for his actual birthday. Seems like I'm always busy, but better late than never.
Saturday, May 2, was the official birthday party with about 60 friends and relatives. We went over the night before to help with the setup which was going very well until we put three adults in charge to put together this new Fisher-Price slide, which on the box set simple to assemble in 10 minutes. 45 minutes later after this 180 pound grandpa jumped up and down on the last piece of the slide for five minutes, it was together. No matter how many times we went over the instructions we never did see that 180 pound guy jumping up and down on that slide, but sometimes you have to improvise. Anyway the slide does work and obviously it's pretty sturdy. Well, with all that hard work, that put me in my ritualistic napping on the couch for about an hour and a half that evening. Boy, what a party guy I am.
Also the day before and the morning of the big party, Jack's mom literally relandscaped the whole backyard. It really looked nice and there were quite a few of us who would like her to fix up our yards. My idea of a green thumb is sticking my thumb up my nose.
We were lucky to have fairly nice weather for May 2. It was mostly sunny and in the 50s but a little breezy, so we're able to be outside most of the time. We were warned ahead of time that Parker is not a big fan of loud happy birthday singing, especially with 60 off key individuals. We tried to sing quietly, but you just can't hide bad singing. it starts with the pout and then follows up with the screaming, but who could blame him. Fortunately, the screaming and singing didn't last long. Thank goodness mom was there to open the presents for him, otherwise I think we'd still be there. Anyway, the food was great, there was plenty to drink, and good company. And what better way to end the day than my ritualistic 1 and 1/2 hour nap on the couch. Still the party animal.
PS My daughter put some photos on Facebook of the birthday party and I believe a photo or two from the dress like Pogo party. Hopefully you can find the pictures, just don't ask me how since I have a tough time just turning on the computer.
Looking forward to a lot more birthdays with my little buddy.
POGO
By the way, the belated first birthday is for the blog and not for his actual birthday. Seems like I'm always busy, but better late than never.
Saturday, May 2, was the official birthday party with about 60 friends and relatives. We went over the night before to help with the setup which was going very well until we put three adults in charge to put together this new Fisher-Price slide, which on the box set simple to assemble in 10 minutes. 45 minutes later after this 180 pound grandpa jumped up and down on the last piece of the slide for five minutes, it was together. No matter how many times we went over the instructions we never did see that 180 pound guy jumping up and down on that slide, but sometimes you have to improvise. Anyway the slide does work and obviously it's pretty sturdy. Well, with all that hard work, that put me in my ritualistic napping on the couch for about an hour and a half that evening. Boy, what a party guy I am.
Also the day before and the morning of the big party, Jack's mom literally relandscaped the whole backyard. It really looked nice and there were quite a few of us who would like her to fix up our yards. My idea of a green thumb is sticking my thumb up my nose.
We were lucky to have fairly nice weather for May 2. It was mostly sunny and in the 50s but a little breezy, so we're able to be outside most of the time. We were warned ahead of time that Parker is not a big fan of loud happy birthday singing, especially with 60 off key individuals. We tried to sing quietly, but you just can't hide bad singing. it starts with the pout and then follows up with the screaming, but who could blame him. Fortunately, the screaming and singing didn't last long. Thank goodness mom was there to open the presents for him, otherwise I think we'd still be there. Anyway, the food was great, there was plenty to drink, and good company. And what better way to end the day than my ritualistic 1 and 1/2 hour nap on the couch. Still the party animal.
PS My daughter put some photos on Facebook of the birthday party and I believe a photo or two from the dress like Pogo party. Hopefully you can find the pictures, just don't ask me how since I have a tough time just turning on the computer.
Looking forward to a lot more birthdays with my little buddy.
POGO
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