On Monday (7/16), Kurt and I met with my neurosurgeon to discuss options for the new brain tumor. He indicated that there is a newly FDA approved surgery for brain tumors that are deeper in the brain; previously, the only option for these tumors was radiation. He is one of three doctors in the United States to be trained in this procedure that has been being done in Canada. We were told that this surgery would provide a greater chance of getting the majority of tumor out and then I would have the stereotactic radiation which could 'zap' any cells that might have been missed by the surgery. The doctor told us to think about what I wanted to do and let him know. I ended up leaving his office and having another MRI - this would help map the surgery and/or the radiation anyway.
While in the waiting room at the MRI area, Kurt and I started to talk to a woman who was there waiting for her husband. We found out that her husband was also diagnosed with melanoma in 2006 and has been fighting metastatic melanoma for approximately two years. (He also has brain METS, tumors in other areas of his body as well as knee replacement due to tumor deteriation of that area from melanoma.) I went in for my MRI but Kurt was able to talk to them for the majority of the time I was in. We did not get their names or information on how to contact them - after discussing this further, Kurt talked to my neurosurgeon about giving them our names and contact information so that we could stay in touch as our medical history is so similar. Our neurosurgeon's office will be in touch with them - hopefully we will be able to get back in touch with them and continue to share our experiences with each other!
On Wednesday morning (7/18), I received a call from the neurosurgeon's nurse to see if I had decided what I wanted to do regarding the surgery. I let him know that I was leaning towards the surgery - I figure it is the greatest chances of getting all of the tumor cells. He said he would start the scheduling process and would be in touch. Kurt and I then met with my radiation oncologist to discuss the stereotactic radiation. All three of my doctors have been in touch with each other and it sounded like all thought it would be a great option for me to have the surgery and then radiation. I was asked to go and see the neurosurgeon again after my appointment with the radiation oncologist.
We also found out new information from the radiation oncology office regarding stereotactic radiation. In the past, the process would be a day-long procedure were they would put a halo on your head, map the radiation during the day and then do the one-time radiation to that area. Now, they have a new machine and are able to do it using the mask like I previously had for the full-brain radiation. A few weeks after the brain surgery, they will have me come in and make a new mask; they will map out the radiation over the next few days and then I will go in at the end of the day and have the one-time radiation. While I did not enjoy having the mask, it is much better than having a halo put on again.
After the radiation appointment, we met with the neurosurgeon again. He spoke with the doctor from Canada that he has been training under about my case and he also thought I was a good candidate for this surgery. We found out that there are only three doctors in the United States that are trained in this surgery (my neurosurgeon at MGH, a doctor at John's Hopkins and another doctor); we also found out that since FDA approval in the U.S., there has been only one surgery performed .... and it just happens it was performed in Marquette by my neurosurgeon. The doctor from Canada assisted in the surgery as well. So, basically... I will be the 2nd person in the United States to have this surgery! The neurosurgeon showed us the instruments they use for the surgery and we watched a video of a simulation surgery they did on a piece of clear gelatin (the 'brain') and a grape (the 'tumor'). Amazing what they could do to get the 'tumor' out! It appears that the recovery time is minimal - sounds like I will go to ICU for one day and then should be able to possibly go home after an MRI the following day. We will be scheduling this surgery within the next few weeks - the neurosurgeon will coordinate his schedule with the Canadian doctor's schedule so he can be here to assist again. (They are thinking it will be either August 7th or 8th but not yet positive on the date.)
We did find out that my tumor is small. It is in the back of my head and the area it could affect is my left vision. I have to go and have some more extensive vision testing done prior to surgery.
Since I won't be having surgery for a couple of weeks, I called my boss to see if I could go back to work on a part-time basis for the few weeks before surgery; I will also try to work part-time as I am able after surgery and with radiation. I will be going back to work for a few days next week! I am looking forward to it!
I will blog again as I find out more information about the upcoming surgery. I was asked if I am nervous about the surgery... I am sure as the day draws closer, I will be; I am more 'excited' to be able to be a part of history and learning!
And, I continue to believe!
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Thursday, July 19, 2012
Monday, July 9, 2012
A Little Bump In the Road - 7/9/2012
I haven't blogged in awhile and, while I haven't been doing much, a lot has been happening.
I will start with my oncology appointment today. I had my 3 month MRI and PET scan last Tuesday. All of us spent a few days in Gwinn for the 4th of July; Kurt and Nathan came back to our house on the night of the 4th. Ashley and I stayed until Friday - with the extreme heat last week, it was nice to be in a home with central air. On Thursday, Kurt got a call from a nurse at my oncologist's office asking how I have been feeling. They said that my MRI showed some brain swelling and they wanted to make sure I wasn't having headaches. They also mentioned that I had persistent lesions but would not explain that any further than to say that my oncologist would discuss with me at my appointment on Monday. So, while this information was on our minds and a little stressful to think about, we tried not to think/stress about it to much. As I said to Kurt, they didn't have me come into the office until my scheduled appointment so I took that as "okay" news.
Today we met with the oncologist and she indicated that my MRI showed some brain swelling. I need to continue to stay on the steroid medication (I've been asking to get off because of weight gain, my continually growing beard :), my facial puffiness, etc). If I have any new symptoms such as headaches, etc., I need to let them know. My MRI also showed that one of my brain tumors - I'm thinking it is one that was there before but not positive - is small but has doubled in size from the last MRI. The other two appear to be stable. Because of the increase in size of the tumor, I have appointments next week to see both the neurosurgeon as well as the radiation oncologist. My guess is that they will do stereotactic radiation to that one brain tumor ... but we will find that out next week for sure.
My PET scan showed something in the liver but the oncologist wanted to discuss this further with the radiologist who read my last MRI and PET scan as two different radiologists can look at things a bit different. In any case, it is very small if there is something there and there is no new tumors. As far as my hip tumor, we cannot get a clear picture on that due to just having the surgery.
I am "on hold" as far as chemo goes. I will see the oncologist in 3 weeks after I am done with my treatment from the neurosurgeon/radiation oncologist. It didn't sound like I would be going back on the current chemo drug I have been taking since the brain tumor did grow - but I am not yet sure what my oncologist is thinking.
I AM OFFICIALLY CRUTCHLESS! Last night I took my first steps down our front stairs at our house. Each day is getting better and better as far as my healing from the femur surgery. I have been "sore" but not in pain and I feel like I am starting to walk better every day. (Oh, and for those not on facebook, I put status updates that Kurt took out my stitches - he did a great job - and Ashley has given me the shots in my stomach for blood clotting; nice to have two "nurses" to take care of me!)
On a personal (and non-medical) note, we've had lots going on - Kurt has been busy with our house remodel/construction, etc. We are adding a mud room and covered deck to the back of our house, putting in new windows/sliding door and putting up new siding. Our house looks like a mess right now but it will be an awesome addition and the new windows and siding will be great as well! (Since I haven't been able to help, Kurt told me I am a good supervisor!)
I will update my blog again after we meet with the doctors next week and have a better idea of what the next "bump in the road" is. Thanks for the thoughts! I continue to believe!
I will start with my oncology appointment today. I had my 3 month MRI and PET scan last Tuesday. All of us spent a few days in Gwinn for the 4th of July; Kurt and Nathan came back to our house on the night of the 4th. Ashley and I stayed until Friday - with the extreme heat last week, it was nice to be in a home with central air. On Thursday, Kurt got a call from a nurse at my oncologist's office asking how I have been feeling. They said that my MRI showed some brain swelling and they wanted to make sure I wasn't having headaches. They also mentioned that I had persistent lesions but would not explain that any further than to say that my oncologist would discuss with me at my appointment on Monday. So, while this information was on our minds and a little stressful to think about, we tried not to think/stress about it to much. As I said to Kurt, they didn't have me come into the office until my scheduled appointment so I took that as "okay" news.
Today we met with the oncologist and she indicated that my MRI showed some brain swelling. I need to continue to stay on the steroid medication (I've been asking to get off because of weight gain, my continually growing beard :), my facial puffiness, etc). If I have any new symptoms such as headaches, etc., I need to let them know. My MRI also showed that one of my brain tumors - I'm thinking it is one that was there before but not positive - is small but has doubled in size from the last MRI. The other two appear to be stable. Because of the increase in size of the tumor, I have appointments next week to see both the neurosurgeon as well as the radiation oncologist. My guess is that they will do stereotactic radiation to that one brain tumor ... but we will find that out next week for sure.
My PET scan showed something in the liver but the oncologist wanted to discuss this further with the radiologist who read my last MRI and PET scan as two different radiologists can look at things a bit different. In any case, it is very small if there is something there and there is no new tumors. As far as my hip tumor, we cannot get a clear picture on that due to just having the surgery.
I am "on hold" as far as chemo goes. I will see the oncologist in 3 weeks after I am done with my treatment from the neurosurgeon/radiation oncologist. It didn't sound like I would be going back on the current chemo drug I have been taking since the brain tumor did grow - but I am not yet sure what my oncologist is thinking.
I AM OFFICIALLY CRUTCHLESS! Last night I took my first steps down our front stairs at our house. Each day is getting better and better as far as my healing from the femur surgery. I have been "sore" but not in pain and I feel like I am starting to walk better every day. (Oh, and for those not on facebook, I put status updates that Kurt took out my stitches - he did a great job - and Ashley has given me the shots in my stomach for blood clotting; nice to have two "nurses" to take care of me!)
On a personal (and non-medical) note, we've had lots going on - Kurt has been busy with our house remodel/construction, etc. We are adding a mud room and covered deck to the back of our house, putting in new windows/sliding door and putting up new siding. Our house looks like a mess right now but it will be an awesome addition and the new windows and siding will be great as well! (Since I haven't been able to help, Kurt told me I am a good supervisor!)
I will update my blog again after we meet with the doctors next week and have a better idea of what the next "bump in the road" is. Thanks for the thoughts! I continue to believe!
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