Hey,
Just wanted to say thanks for coming buy, I have about a week and a half be for the surgery. Anyone have any idea what I should do between now and then. I was thinking that I should go see that new 3D movie before it's to late. Please comment at will it is always nice to know that I am not waisting me time.
Cheers,
EyeCandy (Paul)
Tuesday, July 22, 2008
Thursday, July 17, 2008
C-Day + 27
OK,
The wait goes on.... I had my appointment with Dr. Harbour yesterday. I arrived at the Barnes Retina Institute at 01:15. After about 30 minutes of reading the LARGE PRINT addition of Readers Digest. (Good story on sleep). I was called back to have my eye's dilated and the preliminaries. Eye test, right eye whet K V E T R, D F O P Q, etc..
No problem. Left Eye # % @ *, nothing, I couldn't even see the largest letters. She then gave me the the little eye blocker thing with pinholes in it. Wait K, yes L, yes.... This went on for a total of 5 lines and it only took about 10 minutes. I can't ever remember working so hard on a test in my life. After the eye test she dilated my eyes and it was off to the second waiting room "50 %” of the people sitting here are waiting for the dilation to take affect, I guess the other half are going to drive us home.
About 1 min after sitting down, (Jen had went to the restroom) I heard the words (Choroidal Melanoma) where did that come from? Wait I see a couple people over there in the corner. I listened intently for a few seconds more, before shuffling over. It was like seeing a unicorn 5 times over. Since Dr. Harbour had been in China the last month or so he had a full slate of "lottery Winner's" in the office. The group consisted of 1 ten year vet, one 4 and and one 2 year survivor plus 2 newbies (counting me). The questions started to fly fast and furious. The other newbie was a few years older than me from southern Illinois, this was her first appointment to confirm that her blurred vision was due to a Choroidal Melanoma. In my exuberance to show my knowledge, I began to explain everything that I had read about this disease. It was interesting that within moments a bond was created. More than once it was mentioned that if this was such a rare disease, why did 30% of the people sitting there have it. At some point during the discussion the other newbies daughter told me that she had researched on-line, but hadn't told her mom everything. Oops, I then closed my mouth and went and sat down next to Jen. Over the next 20 minutes I was able to chat with a teacher from Peoria IL that had her surgery 4 years ago. It was really comforting to hear that her life had gone
on and that she was doing well. All three of the survivors had major vision loss in the treated eye but had gone on to live a normal life. At some point I was informed that Dr. Harbour had made it clear over the years that the appointment took as long as it needed so waiting was normal.
After about 30 minutes I got a quick wave from the other newbie and her daughter, and then they were gone. I hope that it was just a mole and she doesn't have to come back.
We waited another 45 min and the it was my turn.
This is my impression of Dr Harbour, at first he looks like he could be an extra on "Days of or lives" needless to say he was a good looking guy with just enough gray to look like a doctor. The next thing you notice is that he is extremely good at what he does, he did a visual exam of both eye's then and ultrasound of the left eye, there was very little chit chat. The best way to describe the exam is you know the auto mechanic that can hear you drive up tell you what's wrong with your car? No test's needed. Dr Harbour had spent a couple of minutes looking and knew the problem and the solution.
He then asked me to sit next to Jen and began to explain our options:
The good:
1. The tumor is only 6mm thick. ( This makes radiation plaque a good option 98% success that the cancer in the eye will be destroyed and the eye will survive.
The bad:
1. I am going to lose most of the vision in my left eye.
2. There is no way to tell if I am Category 1 or Category 2 without a biopsy.
So this is our future, 1 Aug I have surgery to radiate the eye and kill the cancer, but first cut a small hole in the wall of my eye, and take a needle biopsy. I will be in the hospital with the radioactive cap sewn to my eye for 5 days. Then wait for the test and find out if I am Category 1 with very little chance of the cancer spreading to my liver. or Category 2 spreading almost certain. So the march goes on........
Cheers,
EyeCandy (Paul)
The wait goes on.... I had my appointment with Dr. Harbour yesterday. I arrived at the Barnes Retina Institute at 01:15. After about 30 minutes of reading the LARGE PRINT addition of Readers Digest. (Good story on sleep). I was called back to have my eye's dilated and the preliminaries. Eye test, right eye whet K V E T R, D F O P Q, etc..
No problem. Left Eye # % @ *, nothing, I couldn't even see the largest letters. She then gave me the the little eye blocker thing with pinholes in it. Wait K, yes L, yes.... This went on for a total of 5 lines and it only took about 10 minutes. I can't ever remember working so hard on a test in my life. After the eye test she dilated my eyes and it was off to the second waiting room "50 %” of the people sitting here are waiting for the dilation to take affect, I guess the other half are going to drive us home.
About 1 min after sitting down, (Jen had went to the restroom) I heard the words (Choroidal Melanoma) where did that come from? Wait I see a couple people over there in the corner. I listened intently for a few seconds more, before shuffling over. It was like seeing a unicorn 5 times over. Since Dr. Harbour had been in China the last month or so he had a full slate of "lottery Winner's" in the office. The group consisted of 1 ten year vet, one 4 and and one 2 year survivor plus 2 newbies (counting me). The questions started to fly fast and furious. The other newbie was a few years older than me from southern Illinois, this was her first appointment to confirm that her blurred vision was due to a Choroidal Melanoma. In my exuberance to show my knowledge, I began to explain everything that I had read about this disease. It was interesting that within moments a bond was created. More than once it was mentioned that if this was such a rare disease, why did 30% of the people sitting there have it. At some point during the discussion the other newbies daughter told me that she had researched on-line, but hadn't told her mom everything. Oops, I then closed my mouth and went and sat down next to Jen. Over the next 20 minutes I was able to chat with a teacher from Peoria IL that had her surgery 4 years ago. It was really comforting to hear that her life had gone
on and that she was doing well. All three of the survivors had major vision loss in the treated eye but had gone on to live a normal life. At some point I was informed that Dr. Harbour had made it clear over the years that the appointment took as long as it needed so waiting was normal.
After about 30 minutes I got a quick wave from the other newbie and her daughter, and then they were gone. I hope that it was just a mole and she doesn't have to come back.
We waited another 45 min and the it was my turn.
This is my impression of Dr Harbour, at first he looks like he could be an extra on "Days of or lives" needless to say he was a good looking guy with just enough gray to look like a doctor. The next thing you notice is that he is extremely good at what he does, he did a visual exam of both eye's then and ultrasound of the left eye, there was very little chit chat. The best way to describe the exam is you know the auto mechanic that can hear you drive up tell you what's wrong with your car? No test's needed. Dr Harbour had spent a couple of minutes looking and knew the problem and the solution.
He then asked me to sit next to Jen and began to explain our options:
The good:
1. The tumor is only 6mm thick. ( This makes radiation plaque a good option 98% success that the cancer in the eye will be destroyed and the eye will survive.
The bad:
1. I am going to lose most of the vision in my left eye.
2. There is no way to tell if I am Category 1 or Category 2 without a biopsy.
So this is our future, 1 Aug I have surgery to radiate the eye and kill the cancer, but first cut a small hole in the wall of my eye, and take a needle biopsy. I will be in the hospital with the radioactive cap sewn to my eye for 5 days. Then wait for the test and find out if I am Category 1 with very little chance of the cancer spreading to my liver. or Category 2 spreading almost certain. So the march goes on........
Cheers,
EyeCandy (Paul)
Monday, July 14, 2008
C-Day + 24
Hey everyone,
Just waiting for wednesday's appointment... I have been reading everything I can about my cancer. On the cancer front I am feeling preety good. Been really busy getting things in order at work and at home. I will explain more later. Thanks for all the thoughts. It really helps knowing I have friends out there thinking of me.
Cheers,
Paul
Just waiting for wednesday's appointment... I have been reading everything I can about my cancer. On the cancer front I am feeling preety good. Been really busy getting things in order at work and at home. I will explain more later. Thanks for all the thoughts. It really helps knowing I have friends out there thinking of me.
Cheers,
Paul
Wednesday, July 9, 2008
Cancer +6 (C-DAY + 6)
Friday 21 JUNE 2008 (still C-day)
Dr. Fleming quickly explained that there were 2 treatment options, First a radioactive gold cap could be sewn to the outside of the eye destroying the cancer on the inside. It would be left there for about 5 days. Vision loss could be from 10% to total vision loss in the left eye. The other option would be enucleation (removal of the affected eye).
So the next step was to schedule an appointment with Dr. Harbour at Washington University Retina Institute. After much cussing and many threats I was scheduled to see Dr. Rao at Wash-U on Wednesday the 25th of June. Apparently Dr. Harbour was out of the country and even a great case like mine was not going to get him back.
I then drove home feeling numb and trying to think, how I was going to tell Jen. When I got home, Jennifer was sitting out by the pool expecting bad news, she just didn’t know how bad. Well I don’t know if there is a good way to bring cancer into a loved ones life, but I just blurted it out, this was the first time I felt like crying. That feeling lasted about 5 seconds and then I calmly explained what I knew, which was not much.
I spent the rest of Friday night reading everything I could find on-line about Eye cancer. Here is what I knew before bed on that first day:
Choroidal Melanoma (eye cancer) is rare about 1300 cases a year in the US.
There are a limited number of doctors that deal with it about 160 in the US.
Dr Harbour is very big in this field and located right here in St. Louis.
Most people had to travel hundreds of miles to get treatment in Philadelphia, New York or California.
There was a large multi year study that showed that the radioactive plaque treatment was as successful as enucleation. (good news )
The overall 5 year survival rate was about 50%. That if the cancer spreads itnormally spreads to the liver. And once it spreads to the liver you have about 7 months.
If the cancer has already metastasized there is no need to treat the eye. ( bad news)
Dr Harbour has released a research paper showing that Ultra Fine needle biopsy can be done safely; the biopsy tissue can then be tested for 3 genetic markers. If they are present, spreading to the liver is very likely, almost certain. If, the 3 genetic makers are there they can also test an area of the chromosome, and they can tell you about how long you have until the cancer spreads, (if the p chromosome is there less that 25 months if not 37 months.)
The disease typically diagnosed in older adults 55 + witch may affect the 5 year survival rates.
There would be a big emotional and financial burden to bare while treating this disease.
Not so good night!
Saturday, 22 June 2008 (C-Day + 1)
I didn’t sleep very well last night. Jen and the girls are going to the “Goodwin Girls” family get-together today. They left about 10:30. The rest of my day was a blur just reading online. Jen called about 17:00 she and the girls are going to stay the night. She feels bad, she thinks she should be here; I don’t blame her for wanting to get away.
It is strange by the end of the day I feel like I have joined a new family; it seams that once you are diagnosed with cancer you are a member of a club regardless of type.
I did manage to go for a 10 mile bike ride and swim some laps. Emotionally I am all over the map the highs and lows are extreme and change depending on what I am reading at the moment.
My thoughts jumped back and forth from survival to will my life insurance be enough, to uplifting moments where I told myself “you, work best under pressure, and you always come through O.K”. At some point I decided that my painting business (http://www.custommasterpieces.com/) was going to save me. Well if not save me it would be able to provide Jennifer and the girls with steady income to go with the life insurance. There was only one problem, as of this day, the painting business made little money.
I spent this time believing that no matter what happened I would be able to continue to provide for my family and things would work out. There were also times were I felt like a complete failure. For those of you who have suffered or our suffering with cancer, I am sure you understand.
22 June 2008 (C-Day + 2)
Lost...
Will the girls even remember me? The twins are not even 4 yet. I don't remember being 4. Will Mackenzie ever get to go explore Siberia without me. Poor beautiful Emma, I don't even know where she's headed... Jen?
Lost...
Monday, 24 June 2008(C-Day + 3)
First day back at work, had a quick chat with my boss, and let everyone know the situation. Then start asking all the questions about time off etc… Spent a couple hours reading life, long/short term disability insurance contract forms, not fun…
Tuesday, 25 June, 2008 (C-day + 4)
Just waiting to See Dr. Rao tomorrow.
Wednesday, 26 June, 2008 (C-day + 5)
Went to work and paced around, until I left to meet Jennifer. Washington University is about 30 min drive. Neither, Jen nor I felt like talking. We arrived without incident. We parked and then we were informed that the only way to go to the 12th floor was the bank of elevators to the right. I wanted to take the steps to work off a bit if nervous energy as we were early. The 6 elevators were very busy, and it was at this time that I just wanted to run. There were so many sick people every where, I didn’t want to be with them. I felt like screaming. I am sure that wouldn’t have gone over very well.
The waiting room was ok, both Jen and I seamed to relax. I did think it was funny that they had the LARGE PRINT version of all the magazines. We were called back, basic eye check and dilation and then sent to a small waiting room while the eye drops went to work. After about 20 minutes we went to the exam room. I was then examined by a resident in her mid-to-late twenties. She went about looking and writing not saying much. When she finished Dr. Rao showed up took a close look in my eye, confirmed that it was cancer. By the time I got done explaining everything that knew he asked me when I was going to start my residency. So I was scheduled to meet with Dr. Harbour on the 16th of July 2008.
After leaving the doctor I needed to go to my doctor and get a full check-up and arrange for complete blood tests and Full body CT scan. If there is any sign of cancer we will not be treating the eye, but would go straight for standard cancer treatment i.e. chemo…
Jen called the doctor and they said they could get me in at 14:00. We had a quick bite, and then headed over to the doctors office. We waited for an hour and half to be seen. I was falling asleep and felt completely wiped-out. (why can't they put some nice lounge chairs for the really sick people)
The physical went fine, even after all the years in Europe my liver felt fine. They should have the blood-test back in the morning and I was scheduled for the CT tomorrow at 13:30. So if everything goes as planned I will know tomorrow night if the cancer has spread.
Feel very low…….
Wednesday, 27 June, 2008 (C-day + 6)
Didn’t sleep last night ….. I am sure that the CT scan is going to be positive. I went to work, feeling ill. This is the worse day by far. Just sat a work trying to stay busy, but it didn’t really work.
I was told not to eat or drink 2 hours before the scan, so I was surprised to be handed 2 large cups of Cool-Aid when I got to the hospital. About 40 min later I was escorted to CT room. Everything out of you pockets and drop your pants below your knees. I thought this was kind of funny, because the lady was trying to cover me with a sheet. The last thing I was worried about was a nurse seeing my underwear (they were clean.) The scan lasted about 10 min total, for 2 scans. The second one was done with some crazy stuff pumped in to me via an IV. After we finished I asked how long it would take to get the results. She said about 48 hours I guess she could see that I was not impressed with her answer. She then said she could call in the results to my doctor in about an hour. Much better, I headed back to work; it was about 15:30. I called the doctors office at 16:45 to find that all the doctors were gone. I explained why I had called and after about 5 min I was told the scan looked clean. I called Jen and let her know.
Dr. Fleming quickly explained that there were 2 treatment options, First a radioactive gold cap could be sewn to the outside of the eye destroying the cancer on the inside. It would be left there for about 5 days. Vision loss could be from 10% to total vision loss in the left eye. The other option would be enucleation (removal of the affected eye).
So the next step was to schedule an appointment with Dr. Harbour at Washington University Retina Institute. After much cussing and many threats I was scheduled to see Dr. Rao at Wash-U on Wednesday the 25th of June. Apparently Dr. Harbour was out of the country and even a great case like mine was not going to get him back.
I then drove home feeling numb and trying to think, how I was going to tell Jen. When I got home, Jennifer was sitting out by the pool expecting bad news, she just didn’t know how bad. Well I don’t know if there is a good way to bring cancer into a loved ones life, but I just blurted it out, this was the first time I felt like crying. That feeling lasted about 5 seconds and then I calmly explained what I knew, which was not much.
I spent the rest of Friday night reading everything I could find on-line about Eye cancer. Here is what I knew before bed on that first day:
Choroidal Melanoma (eye cancer) is rare about 1300 cases a year in the US.
There are a limited number of doctors that deal with it about 160 in the US.
Dr Harbour is very big in this field and located right here in St. Louis.
Most people had to travel hundreds of miles to get treatment in Philadelphia, New York or California.
There was a large multi year study that showed that the radioactive plaque treatment was as successful as enucleation. (good news )
The overall 5 year survival rate was about 50%. That if the cancer spreads itnormally spreads to the liver. And once it spreads to the liver you have about 7 months.
If the cancer has already metastasized there is no need to treat the eye. ( bad news)
Dr Harbour has released a research paper showing that Ultra Fine needle biopsy can be done safely; the biopsy tissue can then be tested for 3 genetic markers. If they are present, spreading to the liver is very likely, almost certain. If, the 3 genetic makers are there they can also test an area of the chromosome, and they can tell you about how long you have until the cancer spreads, (if the p chromosome is there less that 25 months if not 37 months.)
The disease typically diagnosed in older adults 55 + witch may affect the 5 year survival rates.
There would be a big emotional and financial burden to bare while treating this disease.
Not so good night!
Saturday, 22 June 2008 (C-Day + 1)
I didn’t sleep very well last night. Jen and the girls are going to the “Goodwin Girls” family get-together today. They left about 10:30. The rest of my day was a blur just reading online. Jen called about 17:00 she and the girls are going to stay the night. She feels bad, she thinks she should be here; I don’t blame her for wanting to get away.
It is strange by the end of the day I feel like I have joined a new family; it seams that once you are diagnosed with cancer you are a member of a club regardless of type.
I did manage to go for a 10 mile bike ride and swim some laps. Emotionally I am all over the map the highs and lows are extreme and change depending on what I am reading at the moment.
My thoughts jumped back and forth from survival to will my life insurance be enough, to uplifting moments where I told myself “you, work best under pressure, and you always come through O.K”. At some point I decided that my painting business (http://www.custommasterpieces.com/) was going to save me. Well if not save me it would be able to provide Jennifer and the girls with steady income to go with the life insurance. There was only one problem, as of this day, the painting business made little money.
I spent this time believing that no matter what happened I would be able to continue to provide for my family and things would work out. There were also times were I felt like a complete failure. For those of you who have suffered or our suffering with cancer, I am sure you understand.
22 June 2008 (C-Day + 2)
Lost...
Will the girls even remember me? The twins are not even 4 yet. I don't remember being 4. Will Mackenzie ever get to go explore Siberia without me. Poor beautiful Emma, I don't even know where she's headed... Jen?
Lost...
Monday, 24 June 2008(C-Day + 3)
First day back at work, had a quick chat with my boss, and let everyone know the situation. Then start asking all the questions about time off etc… Spent a couple hours reading life, long/short term disability insurance contract forms, not fun…
Tuesday, 25 June, 2008 (C-day + 4)
Just waiting to See Dr. Rao tomorrow.
Wednesday, 26 June, 2008 (C-day + 5)
Went to work and paced around, until I left to meet Jennifer. Washington University is about 30 min drive. Neither, Jen nor I felt like talking. We arrived without incident. We parked and then we were informed that the only way to go to the 12th floor was the bank of elevators to the right. I wanted to take the steps to work off a bit if nervous energy as we were early. The 6 elevators were very busy, and it was at this time that I just wanted to run. There were so many sick people every where, I didn’t want to be with them. I felt like screaming. I am sure that wouldn’t have gone over very well.
The waiting room was ok, both Jen and I seamed to relax. I did think it was funny that they had the LARGE PRINT version of all the magazines. We were called back, basic eye check and dilation and then sent to a small waiting room while the eye drops went to work. After about 20 minutes we went to the exam room. I was then examined by a resident in her mid-to-late twenties. She went about looking and writing not saying much. When she finished Dr. Rao showed up took a close look in my eye, confirmed that it was cancer. By the time I got done explaining everything that knew he asked me when I was going to start my residency. So I was scheduled to meet with Dr. Harbour on the 16th of July 2008.
After leaving the doctor I needed to go to my doctor and get a full check-up and arrange for complete blood tests and Full body CT scan. If there is any sign of cancer we will not be treating the eye, but would go straight for standard cancer treatment i.e. chemo…
Jen called the doctor and they said they could get me in at 14:00. We had a quick bite, and then headed over to the doctors office. We waited for an hour and half to be seen. I was falling asleep and felt completely wiped-out. (why can't they put some nice lounge chairs for the really sick people)
The physical went fine, even after all the years in Europe my liver felt fine. They should have the blood-test back in the morning and I was scheduled for the CT tomorrow at 13:30. So if everything goes as planned I will know tomorrow night if the cancer has spread.
Feel very low…….
Wednesday, 27 June, 2008 (C-day + 6)
Didn’t sleep last night ….. I am sure that the CT scan is going to be positive. I went to work, feeling ill. This is the worse day by far. Just sat a work trying to stay busy, but it didn’t really work.
I was told not to eat or drink 2 hours before the scan, so I was surprised to be handed 2 large cups of Cool-Aid when I got to the hospital. About 40 min later I was escorted to CT room. Everything out of you pockets and drop your pants below your knees. I thought this was kind of funny, because the lady was trying to cover me with a sheet. The last thing I was worried about was a nurse seeing my underwear (they were clean.) The scan lasted about 10 min total, for 2 scans. The second one was done with some crazy stuff pumped in to me via an IV. After we finished I asked how long it would take to get the results. She said about 48 hours I guess she could see that I was not impressed with her answer. She then said she could call in the results to my doctor in about an hour. Much better, I headed back to work; it was about 15:30. I called the doctors office at 16:45 to find that all the doctors were gone. I explained why I had called and after about 5 min I was told the scan looked clean. I called Jen and let her know.
Tuesday, July 8, 2008
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