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)
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?
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.