We got the Ugly two weeks ago. This week, it was the Bad. Mike had an MRI of his spine to make sure the disease had not spread there. The happy news is that there are no tumors or lesions on Mike’s spine. The not-so-happy news is that the nerve at the base of Mike’s spine is somewhat thickened, which indicates that there are Melanoma cells floating in the area, and coating the nerve. So in addition to getting Whole Brain Radiation (Mike has now finished 5 of the 15 daily treatments), Mike will also be getting radiation to his lower spine. He will receive 14 treatments. Just like the Whole Brain Radiation, this treatment will also be every day for the next three weeks. The side effects will be nausea, fatigue and lower back discomfort, of course.
The comforting part of this whole ordeal is that they discovered the spinal nerve thickening early enough that a tumor had not formed, and hopefully, the radiation will prevent a tumor from ever forming in that area. Our radiation oncologist told us that this radiation is “preventative” and he would rather do it now when it is “elective” than wait until it becomes an “emergency.” He actually used all of those words. Not the best news to get, but not the worst either.
We got the Ugly and the Bad; Good must be on her way. We will be waiting.
Thursday, March 15, 2007
Thursday, March 8, 2007
Blind Date
You know that feeling before a blind date? That feeling of uncertainty, anxiety and fear--what if the person is ugly, boring, not fun, annoying, or obnoxious? And at the same time, the optimism and hope--imagining that it will work out, hoping the person is the right match, and knowing that going on this date is a good idea. Well, not to sound flip, but that's exactly how today felt. Mike and I had a blind date with Whole Brain Radiation.
The uncertainty of what lies ahead is one of the most crippling feelings, and one that cancer patients have to wrestle with daily. Needless to say, we were anxious, nervous and scared today. Endless questions going through our minds: what will it feel like? Will it make Mike sick? Will it work? Will the side effects be awful? At the same time, we were also positive and optimistic. Hoping that the radiation works. Imagining it will work. God, we need it to work.
We got to Penn around 12:45, a whole 15 minutes early. The hallway that leads to Penn’s radiation department is long and narrow, with a mural painted on both sides. I guess the hospital folks thought that a hallway donned in blue paint with white clouds would be comforting to patients as they walk to their flesh BBQ session. It is anything but comforting.
A few minutes after we got there, we met with Dr. Lustig, the radiation oncologist. He first examined Mike's rash, which is now covering Mike's entire body, itches like hell, and looks like purple leather. Dr. Lustig was also at a loss about the rash, and could not offer much more than the same steroids we were given yesterday. I guess it will be up to my internet-acquired medical degree to solve the rash mystery.
After the two-minute chat with Dr. Lustig, a technician came to take Mike to the radiation room for his first treatment. Mike was sweating, and looked nervous. Even though he will never admit it, I knew he was scared. I was too. His radiation technician was a very good looking woman, which I am sure gave Mike some comfort. Before he walked to the treatment room, Mike stopped and gave me a quick kiss, and I was able to utter “be tough.” Mike and I had made a deal that during each radiation session, when his eyes are closed, Mike will just picture Melanoma getting killed and leaving his body--our own wacky guided imagery of sorts. So as he walked away from me, I thought with the loudest quiet voice: “F’ You Melanoma. Get out of our lives.” I then hoped that Mike was thinking the very same.
Back in the packed waiting room, and eleven year-old patient waited for her treatment. She looked really sick. Looking at her made me feel like my chest had been lit on fire. It all seems too unfair.
The first treatment finished with no incident. Mike could not really explain what happened in the treatment room. What I have learned is that Mike's face/head is jammed into a tight mesh mask and strapped to the table, his eyes are closed, and he cannot move. The radiation treatment then starts, targets the entire brain, and lasts about and about 15 mins. That's all I know, and that's more than enough info for me on this particular subject.
Considering he had just finished his first brain radiation session, Mike seemed calm. On the car ride home, I sneezed, and Mike quickly told me not to wipe it on his new car seats. Oh good, his sense of humor is still in tact.
Later in the day, we gave Mike a new hair cut. For the second time in one year, we shaved Mike’s head because of cancer treatment. This really sucks. But life goes on, and so shall we. Even if it means with a bald head!
The uncertainty of what lies ahead is one of the most crippling feelings, and one that cancer patients have to wrestle with daily. Needless to say, we were anxious, nervous and scared today. Endless questions going through our minds: what will it feel like? Will it make Mike sick? Will it work? Will the side effects be awful? At the same time, we were also positive and optimistic. Hoping that the radiation works. Imagining it will work. God, we need it to work.
We got to Penn around 12:45, a whole 15 minutes early. The hallway that leads to Penn’s radiation department is long and narrow, with a mural painted on both sides. I guess the hospital folks thought that a hallway donned in blue paint with white clouds would be comforting to patients as they walk to their flesh BBQ session. It is anything but comforting.
A few minutes after we got there, we met with Dr. Lustig, the radiation oncologist. He first examined Mike's rash, which is now covering Mike's entire body, itches like hell, and looks like purple leather. Dr. Lustig was also at a loss about the rash, and could not offer much more than the same steroids we were given yesterday. I guess it will be up to my internet-acquired medical degree to solve the rash mystery.
After the two-minute chat with Dr. Lustig, a technician came to take Mike to the radiation room for his first treatment. Mike was sweating, and looked nervous. Even though he will never admit it, I knew he was scared. I was too. His radiation technician was a very good looking woman, which I am sure gave Mike some comfort. Before he walked to the treatment room, Mike stopped and gave me a quick kiss, and I was able to utter “be tough.” Mike and I had made a deal that during each radiation session, when his eyes are closed, Mike will just picture Melanoma getting killed and leaving his body--our own wacky guided imagery of sorts. So as he walked away from me, I thought with the loudest quiet voice: “F’ You Melanoma. Get out of our lives.” I then hoped that Mike was thinking the very same.
Back in the packed waiting room, and eleven year-old patient waited for her treatment. She looked really sick. Looking at her made me feel like my chest had been lit on fire. It all seems too unfair.
The first treatment finished with no incident. Mike could not really explain what happened in the treatment room. What I have learned is that Mike's face/head is jammed into a tight mesh mask and strapped to the table, his eyes are closed, and he cannot move. The radiation treatment then starts, targets the entire brain, and lasts about and about 15 mins. That's all I know, and that's more than enough info for me on this particular subject.
Considering he had just finished his first brain radiation session, Mike seemed calm. On the car ride home, I sneezed, and Mike quickly told me not to wipe it on his new car seats. Oh good, his sense of humor is still in tact.
Later in the day, we gave Mike a new hair cut. For the second time in one year, we shaved Mike’s head because of cancer treatment. This really sucks. But life goes on, and so shall we. Even if it means with a bald head!
Wednesday, March 7, 2007
Pity Party
Today, I threw a big party. A pity party, that is. First, for Mike and all that he endlessly has to endure. Then, and I am ashamed to admit this, for myself. To my own defense, Mike's party was bigger and lasted all day.
The medication that Mike started taking in preparation for his brain radiation (a heavy steroid called Decadron) has given him a full-body rash. At least that's the Liz and Mike medical diagnosis. He is so incredibly uncomfortable that last night, he spent half the night in the bathtub with his new girlfriend, Aveeno Oatmeal Powder. But even Aveeno wasn't really helping. Since there was nothing I could do to help, I lay in bed half the night angry that this is what my poor Mike has to go through. I woke up with a pounding headache. Apparently, so did Mike.
We headed to Penn in the morning so that Mike could get measured for his radiation mask. The process took a while because they took a whole bunch of x-rays. At the end of the appointment, we met with a young doctor who examined Mike's rash. He could not offer an explanation, though he was pretty sure that the rash could not have been caused by any of the meds that Mike has started taking. To be cautious, he switched Mike to a different drug (another heavy duty steroid), but he had no idea when and how the rash could go away.
I paged Mike's oncologist in the afternoon, and he could not offer an explanation for the rash either. Since tomorrow is the first radiation session, we will check with the doctors again tomorrow.
Later in the evening, the rash started getting worse. Another sleepless night on deck. The pity party continues . . .
The medication that Mike started taking in preparation for his brain radiation (a heavy steroid called Decadron) has given him a full-body rash. At least that's the Liz and Mike medical diagnosis. He is so incredibly uncomfortable that last night, he spent half the night in the bathtub with his new girlfriend, Aveeno Oatmeal Powder. But even Aveeno wasn't really helping. Since there was nothing I could do to help, I lay in bed half the night angry that this is what my poor Mike has to go through. I woke up with a pounding headache. Apparently, so did Mike.
We headed to Penn in the morning so that Mike could get measured for his radiation mask. The process took a while because they took a whole bunch of x-rays. At the end of the appointment, we met with a young doctor who examined Mike's rash. He could not offer an explanation, though he was pretty sure that the rash could not have been caused by any of the meds that Mike has started taking. To be cautious, he switched Mike to a different drug (another heavy duty steroid), but he had no idea when and how the rash could go away.
I paged Mike's oncologist in the afternoon, and he could not offer an explanation for the rash either. Since tomorrow is the first radiation session, we will check with the doctors again tomorrow.
Later in the evening, the rash started getting worse. Another sleepless night on deck. The pity party continues . . .
Saturday, March 3, 2007
Roller Coaster
This week was a long roller coaster with lots of twists, lots of turns and lots of nauseating moments.
On Tuesday, we met with Mike's oncologist, Dr. Flaherty, to discuss the news and our options. Dr. Flaherty went over the scan results, and though we already knew most of what he said, he went over everything again. True to form, I asked a ton of questions. Here are the basics: the brain MRI shows 4 to 5 lesions on the brain lining. Most of the lesions are very small with the exception of one slightly larger spot. Aside from the spots on the brain lining, the scans also show a few enlarged/diseased lymph nodes deep in the abdomen and chest.
The big concern right now is to treat the spots on the brain. Dr. Flaherty will be setting us up with a radiation oncologist at Penn to discuss possibility of brain radiation. There are two possibilities: (1) RadioSurgery/Gamma Knife, which is very high dose radiation to a targeted area. It is less invasive and it is just one day of treatment. To put it in basic terms, they zap the tumors with the radiation; or (2) Whole Brain Radiation, which is radiation to the whole head. It is a lot more difficult to tolerate and has many more side effects. The treatments will be over a few weeks.
We have no idea if Mike would be a candidate for Gamma Knife, but if he is, we are pretty sure that's the way we would want to go. Gotta keep our fingers crossed!
Using my great begging skills, I managed to get us an appointment with a famous neurosurgeon at NYU on Wednesday. We had four hours to get ready, get Penn to put Mike's scans on a CD on very short notice, which was another Herculean begging project, and get to NY. But we did it. We met with Dr. Kelly at NYU early in the afternoon. Unfortunately, the CDs that we got from Penn were of poor quality, and Dr. Kelly could not really offer us meaningful advice. Based on Dr. Kelly's review of the written reports, he did tell us that he did not think Mike would be a candidate for RadioSurgery/Gamma Knife. Another big blow. We had our hearts set on that. Dr. Kelly did tell us that Penn's radiation oncology and neurosurgery departments are top-notch, and we should feel comfortable staying there.
While the appointment at NYU did not go completely as we had hoped, the trip was not a complete waste. We walked around Fifth Ave. for a bit, bought some fun bath products, ate dinner, and used the train ride home for much needed naps!
Turns out that Dr. Kelly was right. On Friday, we met with the radiation oncologist, Dr. Lustig, at Penn. Mike is definitely not a candidate for RadioSurgery/Gamma Knife because the spots on Mike's brain lining are too small, and the disease is diffuse. So it just makes no sense to radiate a small part of the brain; instead, Mike will undergo Whole Brain Radiation (daily radiation to the whole head). The treatment will be 15 sessions, five days a week. The side effects are fatigue, possible loss of short-term memory (which actually should return with time), confusion and, of course, hair loss. Despite what I expected, Dr. Lustig was actually somewhat optimistic that the radiation could help shrink or stabilize the lesions.
Mike was also started on a high-dose steroid called Decadron to help with the radiation-induced swelling, and also reduce the headaches that Mike has been having. Decadron is a very strong steroid, which will make Mike very hungry, grumpy and wired. Dr. Lustig joked that we might need to lock the fridge!
Later that evening, Mike and I were sitting on our stairs talking. Mike looked at me and said: "Lizzy, I want you to know that I do not lose fights. I have never lost a fight, and I am not ready to lose this one. I am not scared of this radiation. I am ready. I know it will work for me. I know it in my heart. We will kick Melanoma's ass." Throughout our battle with this cancer, I have always admired Mike's unequivocal courage, unshakable strength, unbending optimism and incredible positive attitude. On this particular Friday night, I worshiped him for it.
On Tuesday, we met with Mike's oncologist, Dr. Flaherty, to discuss the news and our options. Dr. Flaherty went over the scan results, and though we already knew most of what he said, he went over everything again. True to form, I asked a ton of questions. Here are the basics: the brain MRI shows 4 to 5 lesions on the brain lining. Most of the lesions are very small with the exception of one slightly larger spot. Aside from the spots on the brain lining, the scans also show a few enlarged/diseased lymph nodes deep in the abdomen and chest.
The big concern right now is to treat the spots on the brain. Dr. Flaherty will be setting us up with a radiation oncologist at Penn to discuss possibility of brain radiation. There are two possibilities: (1) RadioSurgery/Gamma Knife, which is very high dose radiation to a targeted area. It is less invasive and it is just one day of treatment. To put it in basic terms, they zap the tumors with the radiation; or (2) Whole Brain Radiation, which is radiation to the whole head. It is a lot more difficult to tolerate and has many more side effects. The treatments will be over a few weeks.
We have no idea if Mike would be a candidate for Gamma Knife, but if he is, we are pretty sure that's the way we would want to go. Gotta keep our fingers crossed!
Using my great begging skills, I managed to get us an appointment with a famous neurosurgeon at NYU on Wednesday. We had four hours to get ready, get Penn to put Mike's scans on a CD on very short notice, which was another Herculean begging project, and get to NY. But we did it. We met with Dr. Kelly at NYU early in the afternoon. Unfortunately, the CDs that we got from Penn were of poor quality, and Dr. Kelly could not really offer us meaningful advice. Based on Dr. Kelly's review of the written reports, he did tell us that he did not think Mike would be a candidate for RadioSurgery/Gamma Knife. Another big blow. We had our hearts set on that. Dr. Kelly did tell us that Penn's radiation oncology and neurosurgery departments are top-notch, and we should feel comfortable staying there.
While the appointment at NYU did not go completely as we had hoped, the trip was not a complete waste. We walked around Fifth Ave. for a bit, bought some fun bath products, ate dinner, and used the train ride home for much needed naps!
Turns out that Dr. Kelly was right. On Friday, we met with the radiation oncologist, Dr. Lustig, at Penn. Mike is definitely not a candidate for RadioSurgery/Gamma Knife because the spots on Mike's brain lining are too small, and the disease is diffuse. So it just makes no sense to radiate a small part of the brain; instead, Mike will undergo Whole Brain Radiation (daily radiation to the whole head). The treatment will be 15 sessions, five days a week. The side effects are fatigue, possible loss of short-term memory (which actually should return with time), confusion and, of course, hair loss. Despite what I expected, Dr. Lustig was actually somewhat optimistic that the radiation could help shrink or stabilize the lesions.
Mike was also started on a high-dose steroid called Decadron to help with the radiation-induced swelling, and also reduce the headaches that Mike has been having. Decadron is a very strong steroid, which will make Mike very hungry, grumpy and wired. Dr. Lustig joked that we might need to lock the fridge!
Later that evening, Mike and I were sitting on our stairs talking. Mike looked at me and said: "Lizzy, I want you to know that I do not lose fights. I have never lost a fight, and I am not ready to lose this one. I am not scared of this radiation. I am ready. I know it will work for me. I know it in my heart. We will kick Melanoma's ass." Throughout our battle with this cancer, I have always admired Mike's unequivocal courage, unshakable strength, unbending optimism and incredible positive attitude. On this particular Friday night, I worshiped him for it.
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