Thursday, November 6, 2008
The tumor in my eye is about 30 % smaller, so we a confident that it will continue to shrink and be gone in about 9 months.
I also got back the DNA/RNA test results. Not as good as I would have hoped. We are going to treat me as a catagory 2A. Which means there is a high risk of the cancer spreading to my liver, but it could be 3-5 years or more, and I did have one good test that keep me out of the 2B cat which is very good news.
I will write more tomorrow, I don't feel like I was given a death sentance there is a lot of hope that I can still beat this.
Monday, November 3, 2008
Monday, September 15, 2008
Tuesday, September 9, 2008
I am just looking for a bit of feedback, so here goes. I am only 80 days in to this journey, but I feel like I should have had that "Eureka Moment" by now. I know that I have experienced many changes, but yet I still feel the same in most ways. The day to day of raising 4 children, being a husband, going to work and just living seems to take most of my time. On top of this I have the same thoughts and fears as anyone with cancer. I have done a few things that I would not have done 3 months ago, but I can assure you I am neither the perfect father, husband or human. I know, I should be thankful that I have only lost eyesight in one eye and there is still a chance that the cancer will never spread to my liver or anyplace else. ok ok ok..... So does anyone feel they can point to one moment where you feel cancer opened your eye's and in a flash, the person you were, ceased to exist, and you see with new eye's. (pun intended) :)
I hope everything is going well for you and yours.
Monday, September 1, 2008
Have a nide day!
Saturday, August 30, 2008
I know many are suffering and I have been a bit selfless lately. If I have not commented on your post, I am sorry.
We did have our favorite FBI agent visiting the last few days.
I would post pics, but I would have to kill you.. Just so your know
she look's very good and happy.
Have a nice day!
Tuesday, August 26, 2008
I on the other hand am not... If you are in good spirits please ignore this post.
The biggest thing bothering me is the lack of ability to clear my head. Things were
going pretty well the past few days. I had a really productive day at work both yesterday
and today, (nothing like the cancer and insurance combination to motivate a person). I have not been sleeping well, but so is life.
Here is the crux of the problem as I see it, yesterday I called Sue who is my point of contact at Washington University, I asked about my test results. The first is the simple cell type test, the second being the results of the fine needle biopsy that was done prior to the plaque surgery. The biopsy is going to tell me within reason, If the cancer is going to spread or not. It is not 100%, but close enough for me. Now I would think if I was about to give a person a death sentence (I know that future treatments, could change this) I might return his phone call in a timely manner, even if the result was not available. Anyway its been about 34 hours since that call, I had been able to keep the test results out of my head for the last 26 days, no it is consuming me. Hey kids I'll talk tomorrow, I thought writing this would help, but it is not.
Have a nice day!
Tuesday, August 19, 2008
Depression has been beat back to the Stone Ages....... Its time to move forward. Hang on kids we are picking up speed.... I am climbing so fast that we just may need to use the brakes on the uphill! The road will always kick back, but I am strong and focused! I welcome any and all to get on my rear tire and come along for the ride. If you are strong don't be afraid to lead... If you are tired blend into the pack and we will carry you. No one has ever won the Tour De France, it is the team that sets the stage for the winner. We may lose some, to the rigors and strain, but they will not be forgotten or left on the side of the road.
OK, so I present you with the winner of the Tour de Mascoutah, ME....(Mascoutah is the small town in western Illinois where I live) I did about 14 miles today at a steady pace, the hardest part was instead of taking a quick peek over my left shoulder to check for cars I had to almost turn my head 180 degrees and use my right eye. It was a beautiful 86 degrees with bright blue skies. (check the photos page for a photo of me and my trophy.)
I have spent most of my "down-time" wracking my brain trying to figure out, "what I am I going to do", to not only beat the disease that has made a home in my body, "without my permission mind you"! I don't know when or how, but I have become a cancer crusader. And unlike the medieval crusaders I will win this fight even if it takes my life. Each of us bring different talents to the fight, I accept the fact that I am not going to be the man that cures cancer. So what can I do? That has been the over-arching thought in my head. What follows is the answer as I see it at 21:03 CST 19 AUG 2008.
I am going to use the web based business I started 5 years ago to support the cause. You can read the story about www.custommasterpieces.com Here:
This has been my little baby, even though "life" always seemed to get in the way of me devoting the the time necessary to make the site the success it could be.
So, here is the plan, I want to accomplish 3 goals with the website:
1. Create portraits for those in the fight against this brutal disease. I have spent many a sleepless night working on this, and here are the three ideas that I have come up with:
a. The legacy painting. This is a somewhat standard painting, but the principle is strong... we will all die, even if we win our fight with cancer. History up to now dictates that our days are numbered. (this does not apply to the Son of God). That being said, I believe that one of best ways to be remembered is a hand painted portrait. I can still remember receiving my daughters oil portrait, I must have spent 5 hours just staring at it. (see photos) I have spent my life traveling, we have many photos sitting in boxes and stored on Cd's and hard drives. The portraits of Mackenzie and Emma have only been in boxes during transit then placed prominently on the wall at our next destination. I know that we all struggle with the fact that we may not be here one day, nothing like cancer to remind us of our mortality.
b. The second painting is the one I spent the most time thinking about, what I want to do is create a painting that could provide a daily reminder of the cancer battle. The portrait I envision is a rear view of a cancer patient during chemo, pale, thin and bald gazing into a mirror, the reflected image is that of their healthy self. I think that this could be a very inspirational painting, for someone who has beat cancer, it would provide a reminder of how far you have come, (thus taking the edge off the daily grind post cancer.) The same painting could be created during the fight, where the image in the mirror would be the you that you want to be again. I am going to ask Jill, the founder of www.blogforacure.com to be the test case for the first portrait like this. Once it is finished I will post a photo, please give me your input on this idea.
c. The third painting I envision is a man and woman standing holding hands peering off into the distance (could be ocean, woods, mountains, etc...) The concept being that we are in this together regardless of what is out there waiting for us.
2. Notice Full disclosure, I am going to give away 10 - 20 portraits in the 3 styles mentioned above. This will allow me to get my head around what works best. I am not a rich person, nor am I poor, but the fact is cancer is expensive even with insurance. I do need to make money to pay the extra bills and this is my way to do that and provide support to our friends. If everything were to work out I would give away the first 10 - 20 paintings with the request that the recipients tell everyone they know about me, their friends and family would then see that this is a great gift for Christmas, anniversaries, and other special days. I would then use any profits to help pay for my treatment bills, and provide more paintings to those who can not afford one. ( I will provide more info on this in the coming days, it is 23:12 19 August 2008).
3. The third goal is 2 fold, one build a nest egg for the girls if something happens to me, and also create a source of income if I am no longer capable due to illness or death. In the spirit of full disclosure, I do have a reasonable amount of life insurance, but Jenn is a stay at home mom with 4 young girls so that won't last forever. (And I certainly don't want her to feel pressed to replace me for financial reasons). Wait a minute I don't want to be replaced for any reason!
That is the starter post from the new and improved me..... I will be posting a list of many other projects tomorrow and the days to come..... Anyone who has any ideas please let me know. I will also be calling on some of you to help me. There is no way that I can accomplish the magnitude of things that need to be done with out a great team. You want to play? We may be sick, but as of 23:32 (11:32 pm), 19 August 2008 we are not beaten so please join me.
Have a nice day!
P.S. Here is a quick list of things of plan to address in the coming days.
1. We need to get some cancer caregivers (doctors, and nurses) to join our on-line groups and supply the story from their perspective. Why isn't there a dialog between us and them?
2. We need to think about hiring doctors to provide information to us in an unbiased manor. I am not a doctor hater, but my experience is that we have to make major decisions about the treatment recommendations without sufficient information or options. It seems that everything is dumbed down, making it very difficult to decide on treatment options. The Internet has been a godsend to me, but it could be much better. more to come..
3. I would love to use the painting website to provide others with a way to augment the expenses of cancer treatment. ( more to come)......
4. I also want to find a way to provide massage service to people undergoing treatment, when my wife was in the hospital in Belgium after the twins were born she had a masseuse come by everyday for 6 days and massage her legs and it was one of the most memorable experiences of the hospital stay, not to mention therapeutic.
5. Also I think there is an opportunity to get fast food restaurants to provide vouchers to cancer patients, the fact is making dinner is a lot of work when you are tired... I know that they would not be only thinking of the charity, they would expect to gain business from the friends and family of the patient, fair enough, I sort of compare this to the dollar menu, we are very good at ordering from the dollar menu and then going home to complete the menu with our own sides and drinks.
6. This is truly my biggest worry, if I get to the point where more treatment is only going to hurt me, will I know I have reached that point? The fact is doctors and hospitals get paid to treat us, not send us home with bad news.........?
Good Night Folks
Much more to come “I am back on the bike”
Wednesday, August 13, 2008
So the bike hangs alone in the garage.....
While we lived in Belgium, it was not uncommon for me to grab a flight to Slovakia or the Czech Republic and just ride a couple hundred miles over a few days, with a small backpack and no idea where I would end up each day. I can still see the fields of sunflowers that stretched on for miles. And then the High Tartar mountains would begin, time and speed were unimportant. I can't fully explain how great it felt to just ride. I would be covered in dirt and sweat by the end of the day. Then check into some small hotel shower maybe a quick nap. Then I would walk to some little pub have a few cold beers and invariable meet some of the nicest people ever. The conversation always seemed to start the same. I would explain that I was an American living in Belgium, a computer engineer working for NATO. This was followed by talk of culture, music, bikes and life. Then I would walk back to the hotel call Jen let her know I was O.K., and then just sleep some of the best sleep ever, and do it all over again the next day. I could then go back to 12 – 16 hour days with a smile.
I know those day's are over, but the memories will last forever. This cancer thing has changed everything. I can't run away anymore. How easy would it be to call a few friends and get a job in Europe, live in a small village, dine with friends, new culture, new life.......
No, that is not to be.... Jen and the girls love being back. That life with 4 young girls is just too hard. This is a good time to say how great Jennifer has been, for 17 years she went where I wanted, lived where I wanted without complaint (maybe a few :)). I owe her more than I can ever pay.
Things that stick with me: Good and bad
Joining the U.S. Air Force
Asking Jen to marry me..
“I am leaving, I won't be coming back, do you want to come?”
She said "Yes"
best move I ever made............
Nude Beach ... Berlin
Camping in a small cabin with Jen Interlocken Switzerland..
Mountain Climbing whitewater rafting Garmish Germany..
Paris (the first time)
Paris (with Jen and Mackenzie)
Paris Moulon Rouge (Josh Gina Jen)
8 days Southern Italy with Paris Bossa
Rolling the Porsche 1 week before Emma was born. (walked away)
Running our 5K on the canal with Jenn (windy)
268 KM (166 mile) Bike race 4 countries one day non-stop 9+ hours
Holidays Turkey, Bulgaria beach
Biking Czech Republic, Bulgaria, Holland, Belgium, Slovakia....
One week in Holland with Steve Kearby
Day trip on the train Antwerp
Loss of Father... Good bye Dad
Birth - 4 beautiful girls..
Kosovo 9 months alone
Friends.... You know who you are .. Thank You........
CANCER....??????????????????????????????????? @%&*ing CANCER
Tomorrow the fight continues.....
Friday, August 8, 2008
Wednesday, August 6, 2008
Just got home, The eye is a little swollen and uncomfortable. I think 2 more days. It is hard to believe that this all started 46 days ago. I would like to thank everyone for the good thoughts, and prayers. I am not the same person I was 46 days ago. I will continue to make updates here, so if your interested I will still be here. Next big step is to get the genitic test back in about a month, that will tell me if the cancer is expected to spread.
I think I will take a nap.......
EyeCandy ( Paul)
Have a nice day!
Sunday, August 3, 2008
We it’s been about 48 hours since the surgery. As long as I take the pain pills every 4 hours I feel pretty good, I did try to skip a few times and the price was heavy. To tell the truth without the pills it feels like there is crushed glass stuffed in my eye socket. I am over a third of the way through, only 4 more days here. I am required to stay in my room. I hope to get to wander around a bit on Tuesday, I will try to recruit some new members for blogforacure. I have alot idea’s that I will post later today. I am going to play some cards with Jenn and will post again later. Thanks for everything…...
Friday, August 1, 2008
Oh, just in case Paul did not let you all know, his doctor is drop-dead gorgeous! Ha, ha.
Anyway, I just wanted to give a quick update. When he is feeling a little better (when the morphine and vicadin kick in) he will let you know more. Unless he is completely passed out, ha, ha again.
Tuesday, July 22, 2008
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.
Thursday, July 17, 2008
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:
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.
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........
Monday, July 14, 2008
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.
Wednesday, July 9, 2008
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.
Tuesday, July 8, 2008
Saturday, June 28, 2008
It was now about 3:00 pm and the the office was empty as I approached the receptionists window. "Hello, I am here to see doctor Flemming". "Are you Paul". "yes". "please have a seat".After a couple of minutes staring at the magazine rack, in the spacious , waiting area, I was ushered into the exam room. Only I felt a little like a rock star from the attention I seemed to be getting from the ladies at the desk and in the office area. I don't know if this feeling was generated by the fact that they were disappointed to see an emergency retina surgery on a Friday afternoon, or because I was about to become one of the 1,345 in 300,000,000+ people in the United States to win the annual Choroidal Melanoma (eye cancer) lottery.
So after a repeat of the last 5 min exam I was first informed that I do not have a "detached retina". At first there was the slightest sense of relief maybe 5 seconds. Something did not feel right the Doc then took another quick peek and sat down in front of me and asked me if i knew what melanoma was, sure "skin cancer" I replied. Doc Flemming then informed me at about 3:15 pm that I had "skin cancer", IN MY EYE. That takes a minute to process to be sure.
So that is were we will start. I can assure you that I will try and keep a lightness to this blog as I document my experiences.