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Check-in day for brain surgery Roid (and Keppra) rage Sunday is the day Ahhh, the bruising! Dr. Arthur Day,

Posted Nov 04 2009 10:05pm
Waiting to be admitted

Waiting to be admitted

Settled in

Settled in

After a four plus hour wait for a room, we finally got into the neurosurgery wing at the Brigham. Jack came with us while the girls stayed with friends back in NH. He was a real trooper all day although he nearly lost his composure after a while.

So I got my room, a window bed overlooking the Prudential tower downtown, I have an excellent WiFi connection, noiseless headphones, Miles Davis in my ears, plenty of reading material, and I feel like I am in good hands.I will meditate a bit tonight with my healing mp3s and will take the rest of the night easy.

I met with one of Dr. Day’s young doctors who runs the neuro ICU and he was very informative about everything that I will be going through later this week with the surgery and recovery. He told me I was lucky to have Dr. Day perform the surgery since he is the top guy in the division. I am happy about that too.

The doctor was not too concerned about long term residual effects on my left leg post surgery and he said that they might get worse before they get better. As it is right now my left leg is a little weak and tingly from the brain swelling, something that will probably go away after the danger of seizure has subsided.

Settled in, happy for now…

Waiting to be admitted

Waiting to be admitted

Settled in

Settled in

After a four plus hour wait for a room, we finally got into the neurosurgery wing at the Brigham. Jack came with us while the girls stayed with friends back in NH. He was a real trooper all day although he nearly lost his composure after a while.

So I got my room, a window bed overlooking the Prudential tower downtown, I have an excellent WiFi connection, noiseless headphones, Miles Davis in my ears, plenty of reading material, and I feel like I am in good hands.I will meditate a bit tonight with my healing mp3s and will take the rest of the night easy.

I met with one of Dr. Day’s young doctors who runs the neuro ICU and he was very informative about everything that I will be going through later this week with the surgery and recovery. He told me I was lucky to have Dr. Day perform the surgery since he is the top guy in the division. I am happy about that too.

The doctor was not too concerned about long term residual effects on my left leg post surgery and he said that they might get worse before they get better. As it is right now my left leg is a little weak and tingly from the brain swelling, something that will probably go away after the danger of seizure has subsided.

Settled in, happy for now…

Since the discovery of my single brain metastases after my seizures last weekend, the doctors have put me on two insane medicines to control the swelling in my brain and new seizures. The first is called Decadron, a steroid that reduces the edema, or inflammation in my brain that surrounds the lesion. This damn thing has so many nasty side effects, however. One of them is my constant irritation and anger. Everything gets on my nerves. Not to mention I feel like a bloated whale and that is adding to my stress as well. Today I snapped at my son for not chewing his food! I felt instantly bad and ridiculous. I apologized and he understands that this med is doing all this to my personality.

Couple this steroid with Keppra, which is a med that controls seizures and my brain is just mush right now. This drug helps foster a feeling that patients have nicknamed Keppra Rage, another great side effect. So I am on two meds that while they are preventing me from having seizures, are making me a class A asshole around the house and in my head.

I can’t wait to get this tumor out of my brain. A few more days…

Since the discovery of my single brain metastases after my seizures last weekend, the doctors have put me on two insane medicines to control the swelling in my brain and new seizures. The first is called Decadron, a steroid that reduces the edema, or inflammation in my brain that surrounds the lesion. This damn thing has so many nasty side effects, however. One of them is my constant irritation and anger. Everything gets on my nerves. Not to mention I feel like a bloated whale and that is adding to my stress as well. Today I snapped at my son for not chewing his food! I felt instantly bad and ridiculous. I apologized and he understands that this med is doing all this to my personality.

Couple this steroid with Keppra, which is a med that controls seizures and my brain is just mush right now. This drug helps foster a feeling that patients have nicknamed Keppra Rage, another great side effect. So I am on two meds that while they are preventing me from having seizures, are making me a class A asshole around the house and in my head.

I can’t wait to get this tumor out of my brain. A few more days…

2081073131_8264cc03c2 I got the call last night from the Brigham and my surgeon’s nurse practitioner told me that I would be admitted on Sunday for surgery that will take place on Wednesday of next week. This nurse, Sarah, has been in daily contact with me walking me through everything that they will be doing with me. She and the team shuffled around lots of surgeries to get me in as a priority next week, which I appreciate. When I asked her why I was a priority, she said “Because you are in your thirties, because you are young, because you have paid your dues, and because we work hard to keep young people healthy.” Of course that is fantastic to hear.

When I last saw my oncologist I remember waiting in the examination room and he had his list of patients for the day up on the computer screen. I sneaked a peek at our names and ages and I swear, I was the youngest patient by 20 years easily. So, I can see why these professionals would be pulling a little for me given the age difference. Makes me feel special and its nice to have all these nice folks in my corner.

OK so Sunday I go in, I have plenty of reading material, including Dow Mossman’s The Stones of Summer, Thomas Pynchon’s Gravity’s Rainbow, and Philip (my favorite) Roth’s Sabbath’s Theater. Three books in three days is totally doable and I don’t have to skim for an argument (lame academic joke).

2081073131_8264cc03c2 I got the call last night from the Brigham and my surgeon’s nurse practitioner told me that I would be admitted on Sunday for surgery that will take place on Wednesday of next week. This nurse, Sarah, has been in daily contact with me walking me through everything that they will be doing with me. She and the team shuffled around lots of surgeries to get me in as a priority next week, which I appreciate. When I asked her why I was a priority, she said “Because you are in your thirties, because you are young, because you have paid your dues, and because we work hard to keep young people healthy.” Of course that is fantastic to hear.

When I last saw my oncologist I remember waiting in the examination room and he had his list of patients for the day up on the computer screen. I sneaked a peek at our names and ages and I swear, I was the youngest patient by 20 years easily. So, I can see why these professionals would be pulling a little for me given the age difference. Makes me feel special and its nice to have all these nice folks in my corner.

OK so Sunday I go in, I have plenty of reading material, including Dow Mossman’s The Stones of Summer, Thomas Pynchon’s Gravity’s Rainbow, and Philip (my favorite) Roth’s Sabbath’s Theater. Three books in three days is totally doable and I don’t have to skim for an argument (lame academic joke).

img_02281 One of the wonderful side effects of the anti-seizure medication is that my body has become one big, giant, ugly bruise. You can see here on my arm that all these bruises look like they want to lock arms and join forces. Nice, right?

Thank you, Dilantin.

img_02281 One of the wonderful side effects of the anti-seizure medication is that my body has become one big, giant, ugly bruise. You can see here on my arm that all these bruises look like they want to lock arms and join forces. Nice, right?

Thank you, Dilantin.

dayarthur I liked his southern drawl the minute I met him. I have to also say that having the chief neurosurgeon remove this lesion from my brain puts me at ease. He has 28 years of experience, a nice demeanor, and steady hands.

He said that the tumor is small, there is only one, and it is superficial, meaning that it is laying on the brain as opposed to in it. There may be some residual motor skill issues, albeit minor ones, but maybe not with time and therapy. As it is right now I have a constant tingling in my left leg and foot. Nothing major, just enough to notice. I just want to be able to ride my bike again in the future and that is what I told Day. Time will tell.

He thinks the surgery will be easy, about 3 hours or so, followed by a couple of days of recuperation in the ICU. After that I am home resting for a couple of weeks before starting the systemic immunotherapy program at Beth Israel in Boston. That is all I am thinking about at the moment; HDIL2, or High Dose Interleukin 2 and its life long remission success in the patients on whom it works.

My surgery may happen this week. We’ll see how my blood tests come back and if my blood has thickened after stopping the  blood thinners. This new anti-seizure medication make my blood really thin, to the point where I woke up with a nose bleed this morning. Other than that and the tingling, I feel totally normal. Crazy.

My son just came back from his hockey game where he scored two goals in a 9-3 victory. Things are good today and that’s all I can focus on at the moment.

dayarthur I liked his southern drawl the minute I met him. I have to also say that having the chief neurosurgeon remove this lesion from my brain puts me at ease. He has 28 years of experience, a nice demeanor, and steady hands.

He said that the tumor is small, there is only one, and it is superficial, meaning that it is laying on the brain as opposed to in it. There may be some residual motor skill issues, albeit minor ones, but maybe not with time and therapy. As it is right now I have a constant tingling in my left leg and foot. Nothing major, just enough to notice. I just want to be able to ride my bike again in the future and that is what I told Day. Time will tell.

He thinks the surgery will be easy, about 3 hours or so, followed by a couple of days of recuperation in the ICU. After that I am home resting for a couple of weeks before starting the systemic immunotherapy program at Beth Israel in Boston. That is all I am thinking about at the moment; HDIL2, or High Dose Interleukin 2 and its life long remission success in the patients on whom it works.

My surgery may happen this week. We’ll see how my blood tests come back and if my blood has thickened after stopping the  blood thinners. This new anti-seizure medication make my blood really thin, to the point where I woke up with a nose bleed this morning. Other than that and the tingling, I feel totally normal. Crazy.

My son just came back from his hockey game where he scored two goals in a 9-3 victory. Things are good today and that’s all I can focus on at the moment.

n1379589119_74391 So, my old enemy has returned.

First, a quick background. I was diagnosed early in 2007 with a smallish renal cell tumor in my left kidney (about 5.5cm) and had the kidney promptly removed at the famous Brigham and Women’s Hospital in Boston. The pathology reports came back with a reading of stage 1, grade 2. Pretty small and very early for a cancer. No worries, we would just have to watch it every 6  months with CT scans to make sure that it did not return anywhere (kidney cancer is very fond of bone, lungs, and brain).

Well, my first two scans were event free and I got a clean bill of health both times. I felt great, I would bike 20 miles at a clip, hiked all over the White Mountains and the Monadnock region, and was able to keep up with three small children. Not to mention all my undergrads. No worries, all was well.

September of 2008 I went in for another scan and I got the call with the bad news: The found 6 tiny spots or nodules in both my lungs. They were very small, perhaps even too small to biopsy to see if this was the kidney cancer that had indeed metastasized. So, my oncologist reluctantly agreed to wait for 3 more months to see if these things grew at all. Even if only one of the nodules grew, then we would know what we were dealing with. Well, we went in for a follow up earlier this month and two of them had grown and 3 tiny new ones had shown up as well. Needless to say we were pretty devastated but had been prepared for bad news.

My oncologist, who is a kidney cancer specialist, and a wonderful supporter and cheerleader at Dana Farber in Boston wants to enroll me in the HDIL2 at immunotherapy program at Beth Israel in Boston. For those of us not in the know, this is High Dose Interleukin 2, a highly toxic but lifetime curative treatment that if it works, has lifelong remission in kidney cancer patients. It can work in 10-30% of all who go through and despite its side effects, is worth the shot since it can cure for life.

I met with the HDIL2 team at Beth Israel, incidentally the same place where IL2 was first discovered 20 something years ago, and they were optimistic that I was a very good candidate for this working on me. I would have to go in to the ICU, get 5 days worth of injections, suffer the side effects, go off for 4 days, then back on again for 5. I would have to go in for scans 4 weeks later to see if HDIL2 worked. If it did, there would be shrinkage or no growth. If it didn’t then the tumors would have grown. I am banking on this treatment working.

My oncologist wanted me to go in to the Brigham for a lung biopsy on 12/31 where the surgeon would take one of the small nodules and remove it, send it to the pathologist and then get the positive reading for cancer. He wants to ensure that we know which cancer we will be treating. So I was ready to go in on the 26th, have a few days of tests, and then the biopsy on 12/31. I was ready until this weekend.

We had a huge snowstorm on Sunday and we needed a few things from the store. I strapped on my snowshoes and grabbed my poles and headed out with my son Jack to Walgreens about a mile up the road to get milk, juice, etc. It was a beautful day for snowshowing. Jack decided that he wanted to turn around since it was snowing really hard (we had a two day total of over 2.5 feet) so I walked him back home and then turned around and went to Walgreens.

After buying my things I went outside to strap my shoes on again, when my left leg, which had been a little numb for a few days, started to gyrate and buck wildly. I tried to maintain control but it just wouldn’t work. The last thing I remember was making eye contact with this kid who worked there who was shoveling snow. Melissa told me that I tried to call her and tell her I needed help but all that would come out was garbled noise.

I woke up in  the ambulance with the nice firefighters telling me I had a seizure. After an MRI at Exeter Hospital it turns out that I have a ’small, superficial tumor’ on my brain. The docs say that this is easy to get to and my oncologist now wants to biopsy that tumor instead of doing a lung biopsy at this point, which makes sense. The cancer found its way to my brain, but thankfully it is only one tumor and it is small and easy to remove… a silver lining in this dark cloud. So, after this tumor removal my next step should be to do intensive High Dose Interleukin 2, this crazy immunotherapy that stimulates the immune system to find and kill the kidney cancer cells.

I meet with a cancer neurosurgeon on Friday morning in Boston who will remove this pesky thing and then I recuperate until starting my HDIL2 therapy, which offers me the greatest chance of long term survival!

n1379589119_74391 So, my old enemy has returned.

First, a quick background. I was diagnosed early in 2007 with a smallish renal cell tumor in my left kidney (about 5.5cm) and had the kidney promptly removed at the famous Brigham and Women’s Hospital in Boston. The pathology reports came back with a reading of stage 1, grade 2. Pretty small and very early for a cancer. No worries, we would just have to watch it every 6  months with CT scans to make sure that it did not return anywhere (kidney cancer is very fond of bone, lungs, and brain).

Well, my first two scans were event free and I got a clean bill of health both times. I felt great, I would bike 20 miles at a clip, hiked all over the White Mountains and the Monadnock region, and was able to keep up with three small children. Not to mention all my undergrads. No worries, all was well.

September of 2008 I went in for another scan and I got the call with the bad news: The found 6 tiny spots or nodules in both my lungs. They were very small, perhaps even too small to biopsy to see if this was the kidney cancer that had indeed metastasized. So, my oncologist reluctantly agreed to wait for 3 more months to see if these things grew at all. Even if only one of the nodules grew, then we would know what we were dealing with. Well, we went in for a follow up earlier this month and two of them had grown and 3 tiny new ones had shown up as well. Needless to say we were pretty devastated but had been prepared for bad news.

My oncologist, who is a kidney cancer specialist, and a wonderful supporter and cheerleader at Dana Farber in Boston wants to enroll me in the HDIL2 at immunotherapy program at Beth Israel in Boston. For those of us not in the know, this is High Dose Interleukin 2, a highly toxic but lifetime curative treatment that if it works, has lifelong remission in kidney cancer patients. It can work in 10-30% of all who go through and despite its side effects, is worth the shot since it can cure for life.

I met with the HDIL2 team at Beth Israel, incidentally the same place where IL2 was first discovered 20 something years ago, and they were optimistic that I was a very good candidate for this working on me. I would have to go in to the ICU, get 5 days worth of injections, suffer the side effects, go off for 4 days, then back on again for 5. I would have to go in for scans 4 weeks later to see if HDIL2 worked. If it did, there would be shrinkage or no growth. If it didn’t then the tumors would have grown. I am banking on this treatment working.

My oncologist wanted me to go in to the Brigham for a lung biopsy on 12/31 where the surgeon would take one of the small nodules and remove it, send it to the pathologist and then get the positive reading for cancer. He wants to ensure that we know which cancer we will be treating. So I was ready to go in on the 26th, have a few days of tests, and then the biopsy on 12/31. I was ready until this weekend.

We had a huge snowstorm on Sunday and we needed a few things from the store. I strapped on my snowshoes and grabbed my poles and headed out with my son Jack to Walgreens about a mile up the road to get milk, juice, etc. It was a beautful day for snowshowing. Jack decided that he wanted to turn around since it was snowing really hard (we had a two day total of over 2.5 feet) so I walked him back home and then turned around and went to Walgreens.

After buying my things I went outside to strap my shoes on again, when my left leg, which had been a little numb for a few days, started to gyrate and buck wildly. I tried to maintain control but it just wouldn’t work. The last thing I remember was making eye contact with this kid who worked there who was shoveling snow. Melissa told me that I tried to call her and tell her I needed help but all that would come out was garbled noise.

I woke up in  the ambulance with the nice firefighters telling me I had a seizure. After an MRI at Exeter Hospital it turns out that I have a ’small, superficial tumor’ on my brain. The docs say that this is easy to get to and my oncologist now wants to biopsy that tumor instead of doing a lung biopsy at this point, which makes sense. The cancer found its way to my brain, but thankfully it is only one tumor and it is small and easy to remove… a silver lining in this dark cloud. So, after this tumor removal my next step should be to do intensive High Dose Interleukin 2, this crazy immunotherapy that stimulates the immune system to find and kill the kidney cancer cells.

I meet with a cancer neurosurgeon on Friday morning in Boston who will remove this pesky thing and then I recuperate until starting my HDIL2 therapy, which offers me the greatest chance of long term survival!

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