It's been a busy couple of days. I found out on Friday night that my radiation treatment was scheduled for Monday (9/17) at 6 p.m. I went to the appointment and met with the radiation oncologist; he indicated that he and the neurosurgeon went through my two MRIs... one from the day before my brain surgery (8/7) versus the one a month earlier. I knew about one additional tumor that they were going to radiate - well, I found out that there are 5-6 areas that they need to radiate. They planned to now do two radiation treatments. The first one would include the area of the latest brain surgery site along with two of the tumors that have changed the most; the second radiation will include 2-3 more tumor sites (which we will do in @ two weeks). The actual radiation is much easier with this mask - it doesn't cover my chin and mouth which is nice to be able to talk and open your mouth but still not move your head. They originally told me it would take about 30 minutes - well, I was in the radiation room for about 2 hours. Not sure why it was so long but glad #1 of 2 is over!
Today (9/18/2012) I met with the oncologist and she indicated that I should finish up my radiation treatments and then I can start on the BRAF-inhibitor chemo medication (Zelboraf) that I previously took for two days before they started me on the chemo med, Temodar. So, in a couple of weeks I will start that medication. We are hoping that this will work on the brain tumors as well as the liver/hip issues.
I also found out the results of my PET scan - liver is still the same (healing but now the same size), right hip they cannot really tell since their is so much 'trauma' to the area due to my femur/rod surgery in June; she did indicate that this scan showed some 'activity' in my left hip - she asked if I was having any pain in that area. Boy, I sure hope I don't have issues with that hip - I'm afraid I won't be able to walk! So, we will see what the next scan shows in regards to that area - and we'll see if the Zelboraf helps all of these issues as well.
I'm thinking I am a little 'unlucky' because of the new tumors but I also know that I have been through some major surgeries and I wasn't on any chemo. Hopefully this chemo will decrease the tumor growth and/or get rid of the ones that are there! (And, of course, that hopefully will happen with the radiation as well!)
Even though it's not the best news, I continue to believe!
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Tuesday, September 18, 2012
Tuesday, September 11, 2012
Feeling Good with This Crazy Brain ... And a HAIRCUT - 9/11/2012
I haven't been blogging much since I've been back to work more. The last two weeks I have been back to work and trying to o get back to more full-time status although it is a bit hard some days as I still have quite a few appointments. This past week (last Tuesday, September 4th), the kids started their first day back to school. I also had an appointment to see the radiation oncologist for my mask fitting. When I woke up, I felt my brain surgery incision and found that it was 'oozing' a little blood. I thought maybe I scratched the incision as I have been having issues with my head being itchy from what I assume is an allergy to the baby shampoo. I contacted the radiation oncology office to let them know this was happening - he didn't want to do the mask fitting earlier as he didn't want there to be issues with my brain surgery incision. I ended up calling the neurosurgeon's office and they asked for us to stop in before my appointment with the radiation oncologist. I went to their office first and the PA indicated that moisture was 'seeping' out from under the dermabond glue and he removed part of the dermabond. Part of the incision was not healed yet but it will with that glue removed. I then went down to the radiation oncology office. I really thought that they wouldn't do the mask fitting as I had the issue with the incision being open but they did end up doing it. I was very anxious about it as I am claustrophobic ... I did take some meds once I knew they were going to proceed with the fitting. It was actually a little different than the last mask and it didn't cover over my mouth and chin so I was able to open my mouth which seemed to help. After the mask was fit, they did a CT scan on the radiation table and then I was able to go. They said they would map out the radiation by combining my latest MRI with the CT scan and then would contact me to schedule the one-time radiation treatment. (I still haven't heard when the appointment will be.)
I received a call from the neurosurgeon's office last Wednesday (Sept. 5th) that I needed to have another MRI. I didn't get in touch with them until Friday and we scheduled the MRI for Monday morning. We then had an surgery follow-up appointment with the neurosurgeon afterwards. He gave me the following MRI pictures to show that there are two tumors that I will have radiated as well as the area of where my surgery is. (As you can, the tumors have gotten bigger - I haven't had any chemo or treatment since May other than the surgery.)
They will now use both the CT scan and latest MRI to map the radiation and should be within the next week I'd guess. The neurosurgeon indicated they have now done 4 surgeries - possibly a 5th is coming up soon. I am very grateful that there is another option to remove the tumors. I can't believe that they could do surgery on your brain and it really didn't feel like I had any surgery! I thank them for making new advancements in medical miracles every day!
Tonight I saw my friend, Casey, who happens to cut my hair. If you haven't seen me, my hair has been CRAZY ... its growing back pretty fast in the back where they shaved it for the surgery (into a 'reverse mohawk'); I've also let the areas that had the "life savers" grow back a bit. It's just one of those things that is going to take time - but it will grow. I also must say that it really bothered my Dad the one day I was shopping with him in Target and he saw some lady LAUGH when I walked by her. I didn't see it but it wouldn't have affected me as much as him as I've seen it a lot. It makes me realize how to react (or not react) to people with differences! I don't know how I acted towards people before but I know now how to NOT react. Quite honestly, someone asked me how to react ... and I can't answer that. But I will say that a smile (not laughing) is enough for me - and, of course, I'd rather someone ask me what happened than stare!
The next step will be to see my oncologist on Tuesday, September 18th and I hope to figure out what our next step is as well as find out the results of my PET scan which was done at the end of August. I will update my blog as I know more...
I continue to believe!
I received a call from the neurosurgeon's office last Wednesday (Sept. 5th) that I needed to have another MRI. I didn't get in touch with them until Friday and we scheduled the MRI for Monday morning. We then had an surgery follow-up appointment with the neurosurgeon afterwards. He gave me the following MRI pictures to show that there are two tumors that I will have radiated as well as the area of where my surgery is. (As you can, the tumors have gotten bigger - I haven't had any chemo or treatment since May other than the surgery.)
They will now use both the CT scan and latest MRI to map the radiation and should be within the next week I'd guess. The neurosurgeon indicated they have now done 4 surgeries - possibly a 5th is coming up soon. I am very grateful that there is another option to remove the tumors. I can't believe that they could do surgery on your brain and it really didn't feel like I had any surgery! I thank them for making new advancements in medical miracles every day!
Tonight I saw my friend, Casey, who happens to cut my hair. If you haven't seen me, my hair has been CRAZY ... its growing back pretty fast in the back where they shaved it for the surgery (into a 'reverse mohawk'); I've also let the areas that had the "life savers" grow back a bit. It's just one of those things that is going to take time - but it will grow. I also must say that it really bothered my Dad the one day I was shopping with him in Target and he saw some lady LAUGH when I walked by her. I didn't see it but it wouldn't have affected me as much as him as I've seen it a lot. It makes me realize how to react (or not react) to people with differences! I don't know how I acted towards people before but I know now how to NOT react. Quite honestly, someone asked me how to react ... and I can't answer that. But I will say that a smile (not laughing) is enough for me - and, of course, I'd rather someone ask me what happened than stare!
The next step will be to see my oncologist on Tuesday, September 18th and I hope to figure out what our next step is as well as find out the results of my PET scan which was done at the end of August. I will update my blog as I know more...
I continue to believe!
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