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.