My Eye Cancer

C-DAY + 361 Almost one year!

2009-06-16T07:44:00.000-07:00

Well it has been almost a year since this Cancer trip started!

My parents are having a big party/benifet this Saturday 20 JUN 2009 from 4:00pm -12:00 pm at the AMVETS Hall. $20.00 all the food and beer is paid for, also DJ and live band. Should be a good time. If you want more info just e-mail me:

Paul@coverdell.net

I am proceeding with the only current treatment available for
"Choroidal Melanoma". The original tumor in the left eye was treated
with a surgical option in August 2008, we are very pleased with the
progress in the eye, the loss of vision is about 80 %. I have
completed 3 of the 4 trips for adjuvant Chemotherapy in San Diego. Each trip has
resulted in more side effects as the effects of Chemo are cumulative. The final trip has been postponed 3 times do to very low blood counts.
After completion of the last trip there is no guarantee that the Cancer
will not spread. I will continue to get Full Body CT/PET scans every
4 months for the next 2 years.

Cheers,

EyeCandy (Paul)

C-day +326 Feel better no drugs

2009-04-29T16:46:00.000-07:00

Quick update...

It is not a lot of fun, the IV Chemo (cisplatin) and the Tamoxifen knocks me down for about a week and then the 50mg Sutent really starts to work wonders on my mouth for the next 2 weeks. Apparently I may be pregnant, bloating, nausia, fatigue, etc... Facial hair is completely white and most of the hair on my legs has fallen out. So life is good. Halfway home now.

Cheers,

EyeCandy (Paul)

C-day +311

2009-04-14T14:06:00.000-07:00

Hey,

Well a guess this is what happens, I know I should be posting more, but I have not be feeling well the last week.

The second time is a bit worse that the first, we flew back Thursday and I worked Friday and Saturday. I am hoping to start feeling better tomorrow.

Cheers,

EyeCandy (Paul)

C-day +305 Back in San Diego (Chemo Round 2)

2009-04-08T03:21:00.000-07:00

Hey,

Jen and I are in San Diego, Everything is going as planned. The weather has been nice 65F - 70F. I will post some photos and video later today.

Cheers,

EyeCandy (Paul)

C-day +297 Raffle Drawing

2009-03-31T18:24:00.000-07:00

Thanks,

The winners of the Raffle were Josh Jarvis and Barb Hedge....

Enjoy the Video... It was fun! Thanks...

Cheers,

EyeCandy

C-day +296 Last Day of Chemo #1

2009-03-30T16:43:00.001-07:00

Ok, I know I should have posted more! I will do better.

So today was the last day of SUTENT (Oral Chemo), I now get 7 days with no drugs. I did get really sick 2 weeks ago, but it only lasted for about 3 days. The rest of the time I have been doing pretty good, just really tired. The worst side effect has been a really sore mouth. I also have "splinter Hemorrages" under my fingernails, it does look like a bunch of splinters. The good news is that this is a sign that the SUTENT is working.

We willing be drawing the winning raffle ticket tomorrow, I plan to post the video tomorrow evening. Good Luck to everyone.... And Thank You!

I will do much better with the updates....

Jen and I fly to San Diego next Monday to start round 2.

Cheers,

EyeCandy (Paul)

C-day +281 Not feeling so SASSY!

2009-03-15T07:26:00.000-07:00

My first day home started out good, Jen and I took Kya to the park jogged a couple of miles. Then I took the poison. The rest of the day involved me sitting or laying in the same place. So we are going to try a different approach today. I helped get Jen and the Girls off to Church, and had a bowl of oatmeal. I will wait about an hour before taking the drugs. Then the plan is to take Kya and the girls over to the dog park for a nice walk vs running.

Cheers,

EyeCandy (Paul)

C-day +279 HOME

2009-03-13T19:06:00.000-07:00

Made it home with a little help from "Jane and the ladies at American Airlines desk" Thanks for the help. Flight was uneventful, the girls seemed overjoyed to have me home.

Cheers,

EyeCandy (Paul)

C-day +279 Going Home Today

2009-03-13T05:44:00.000-07:00

Hey,

Still doing pretty good, few rough spots, but all is well. Here is a fun video from facebook. I hope the flights are ok. Thanks "Kathy Weber" for the pointer on gallon ziplocks.

C-day +278 Chemo trip video

2009-03-12T11:33:00.000-07:00

C-day +278 Almost Done

2009-03-12T11:26:00.000-07:00

It is 18 hours after last IV ... Nausia meds are outstanding.... I had some food after and then sleep for about 5-6 hours. I just dropped Steve off at the airport. I have to go get one more injection and then I am all done. Thanks to everyone for the well wishes.

Cheers,

EyeCandy (Paul)

C-day +277 Chemo Day

2009-03-11T12:23:00.001-07:00

Just got the IV in..... Still feeling pretty good.... Heres a video, I am planning to update all day.

Cheers,

EyeCandy (Paul)

C-day +276 Chemo Day

2009-03-10T20:56:00.000-07:00

Today first day of all 3 chemo drugs together. The session for the IV cisplatin went very well. I am back at the hotel resting. I have noticed a few little things, but feel pretty good. It is 21:00 (09:00 pm), and I have not gottten sick yet. I am going to try and live broadcast the chemo session tomorrow.

Thanks for all the prayers and good thoughts!

I expect to suffer a bit tomorrow, I will keep you informed.

Cheers,

Eyecandy (Paul)

C-day +275 First Chemo Drugs...

2009-03-10T07:58:00.000-07:00

I met Dr. McClay today, visit went well.

(I will write more about this soon)

I was able to pick up my $8,000 bag of drugs for this month. Had to hurry back to the hotel and lock them in the safe. I started taking the first coarse of Tamoxifen today it is (4- 20mg pills 2 times each day). I felt a little off, but seemed to feel fine around 20:00 (08:00 pm).

I start the IV - Cisplatin tomorrow at 13:00 (01:00 pm). The Cisplatin only takes one hour, but it will be followed with a few hours of fluids.

Cheers,

EyeCandy (Paul)

C-day +264 Fun Videos!!!!!!!

2009-02-26T14:08:00.000-08:00

How about a little Fun!!!!

Paul as Tarzan......

C-day +262 Chemo Start

2009-02-24T19:12:00.000-08:00

Hey,

The start of CHEMO treatments in San Diego have been postponed until 7 March. No, problems just a scheduling decision.

If you have any questions, just make a comment or send me an E-mail.

Cheers,

EyeCandy (Paul)

C-day +258 Packing my bags...for San Diego

2009-02-20T19:11:00.000-08:00

Well, it looks like I am in the clinical trial in San Diego!

I am planning to leave a week from Monday.

Cheers,

EyeCandy, (Paul)

C-day +256 Blood looks good!

2009-02-18T18:19:00.000-08:00

Blood test are all normal!

My mom came for dinner, I informed her that I prefer to travel to San Diego alone the first time. I know she is disappointed, but I think it is best. I will just get the Chemo and go back to my hotel and deal with any side effects. This will save money for a "rainy day". Jen seams OK with this. So I will start the travel plans tomorrow.

Yesterday, Scott our mail man stopped by and gave us 100 Cd's of Christian Rock music that he recorded, he is really good.

Then the post-master called and wants to see if the local lions club can help. People have really been amazing. Thanks again........

Cheers,

EyeCandy (Paul)

Have a nice day!

C-day +255 Scan Results

2009-02-17T16:43:00.000-08:00

Brain MRI and Full Body PET / CT came back clean..... It was then off to my GP to get the final blood and urine tests.

Things are coming together......

Cheers,

EyeCandy (Paul)

Have a nice day!

C-day +255 Scan Day

2009-02-16T18:31:00.000-08:00

Brain MRI and full body PET/CT scans, 6+ Hours of waiting and scanning... Good Times.. No results Maybe tomorrow.

Cheers,

EyeCandy (Paul)

C-day +250

2009-02-11T20:03:00.000-08:00

Left to right ( Kylie, Mackenzie, Paul, Emma, Jennifer, Keira)

Coverdell Cancer Fund
My Name is Paul Coverdell, I have "Choriodial Melenoma" (EyeCancer). I my cancer is the very aggresive form, 5 year outlook is very poor.

Current Fundraising to help with expences associated with treatment, We will be selling raffle tickets for $10.00. The prize will be a one person hand painted oil painting.

I will continue to update this page as we get the ball rolling.

By Raffle Tickets online:

Http://www.custommasterpieces.com/cancer

Current treatment status: 11 FEB 2009

Eye Tumor continues to shrink, surgery 1 AUG 2008.

Brain MRI and full body PET/CT scans, and blood test, Monday 16, Febuary 2009. If all scans are clean (no current metatasis), I will procede with the Clinical Trail in San Diego.

Clinical Trail in San Diego 4 month's 28 day cycle 2 oral chemo drugs, and IV Cisplantin chemo. I will be flying from St. Louis to San Diego 4 times staying in San Diego 3 -5 Days, of coarse longer if I get to sick from the treatment.

Thanks,

The Coverdell Family!
Email - paul@coverdell.net

C-day +236 Lucky Guy

2009-01-28T21:02:00.000-08:00

I have been accepted in to the medical trial in San Diego:)

Still playing insurance games.

I would like to thank all my friends and family for your continued support.

It appears that the next 4 months of Chemo are going to suck....but I still
hold out hope that I will tolerate the drugs well.

Cheers,

Paul

C-Day +220

2009-01-12T18:33:00.000-08:00

Well,It's been 220 day's since everything changed. Here's the update.

1. Eye surgery went perfect 1 Aug 2008

2. DNA test show loss of one copy of Chromosome 3, as of this date loss of chromosome 3 signifies 100% chance of metastasis to the liver, no one has ever survived choroidal melanoma with metastasis to the liver. Guess I will have to be the first.

3. My best calculations show me paying between $170,000 to about $260,000 dollars in the last 18.5 years for medical insurance, yet I have to spend hours each week talking to providers about this form and that. The biggest pisser is you can't talk to the medical review board, no you get to talk to "Pat" or "Ebony" or "Jane". It is kind of fun to call 2 or 3 times a day just to see how different the information provided can be.

4. I spend about 30 hours per week researching treatment options, cancer news, insurance info.

5. If the Cancer doesn't get me, there is a good chance that the stress will.

6. So my advice is DONT GET CANCER.......

7. If you do, Read Read Read, Knowledge is power, I hope to be accepted into a medical trail San Diego, 4 months of Chemo, at least I should be thin for summer.

Cheers,

Paul

C-Day +137 And the test results are?

2008-11-06T02:58:00.000-08:00

I had my three month post follow up yesterday.

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.

Cheers,

Paul

EyeCandy

C-Day +135

2008-11-03T16:44:00.000-08:00

Hey,

Well 2 more days until I get the DNA test back. The appointment is for 03:40 5 NOV 2008.

Talk to you then.

Cheers,

EyeCandy

Have a great day!

Kiera and Kylie 4th B-day (C-Day + 86)

2008-09-15T07:30:00.000-07:00

Kiera and Kylie are 4....... Here's a pic of Jens castle cake.

The new Me? (C-day + 80)

2008-09-09T16:34:00.000-07:00

Hello all,
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.

Regards,

EyeCandy (Paul)

First Cancer Friend Painting (C-Day +72)

2008-09-01T19:53:00.000-07:00

Well the first painting is complete. I am very happy with the results. Please take a look and let me hear your thoughts. Jill is the founder of http://blogforacure.com/ .The painting is based on a photo of Jill and her dog Angel that she got after finding out about her breast cancer. We also tried to work the pink in to the sweater. The painting is 16 x20 pastel. I am still updating the http://www.custommasterpieces.com cancer pages stay tuned.

EyeCandy, (Paul)

Have a nide day!

Cancer ( C-day +70

2008-08-30T16:39:00.000-07:00

Well I got my results from the biopsy. INCONCULSIVE, so we will wait for another 3 weeks. I will say, that many ideas during this wait were wrong. It was a treat to hear from Dr. Harbour even though my results were a 1 in a hundred and INCONCLSIVE. I will wait a few more weeks, for the next test.

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.

Love,

EyeCandy (Paul)

Have a nice day!

Time to Vent! ( C-Day +66)

2008-08-26T17:38:00.000-07:00

I honestly hope each and everyone of you are Having a great day!

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.

Cheers,

EyeCandy (Paul)

Have a nice day!

I'm back (C-Day + 59)

2008-08-19T22:50:00.001-07:00

I'm Back!

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:

http://www.custommasterpieces.com/info.php?id=2

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.

Website: http://www.custommasterpieces.com/

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.

Cheers,

EyeCandy (Paul)

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”

Depression (C-Day + 53)

2008-08-13T15:36:00.000-07:00

Well I have been back at work for 3 days. The eye is still irritated, but hasn't been to bad. The depression is setting in and I don't like it! I have many things to do, but my drive to get them done is failing me. I had planned to ride my bike across the state of Illinois last Saturday, but I am not allowed to exercise for another week. Increased pressure on the eye, it seems, is a bad thing.

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

Straussenfest Berlin

Ramstien AFB

Camping in a small cabin with Jen Interlocken Switzerland..

Mountain Climbing whitewater rafting Garmish Germany..

Volksmarch, Oktoberfest

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.....

Cheers,

Paul

What I see....... (C-Day +48)

2008-08-08T13:02:00.000-07:00

Hey Friends,
Just thought I would post a couple of pics the first is what You see and the second is what I see out of my left eye. Thinking of many…...
Cheers,
EyeCandy (Paul)
Have a nice day!

Home (C-Day + 46)

2008-08-06T13:45:00.000-07:00

Hey,

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.......

Cheers,

EyeCandy ( Paul)

Have a nice day!

2 Days Post-op (C-DAY +43)

2008-08-03T10:31:00.000-07:00

Here a Photo of eye-patch 2.0, the bulk is the lead plate.

Good day all,

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…...
Eyecandy (Paul)

1st surger c-Day+41

2008-08-01T10:24:00.000-07:00

This is Paul's wife, Jennifer. Surgery went smoothly and he is resting (uncomfortably). We will know some preliminary results from the biopsy on Tuesday, but will not know about the genetic stuff for another month. Seems like a long time to wait, but we will be as patient as possible.

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.

C-Day + 32

2008-07-22T19:47:00.000-07:00

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)

C-Day + 27

2008-07-17T17:12:00.000-07:00

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)

C-Day + 24

2008-07-14T15:54:00.000-07:00

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

Cancer +6 (C-DAY + 6)

2008-07-09T17:13:00.000-07:00

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.

Big update coming tomorrow.....

2008-07-08T13:46:00.000-07:00

Big update coming tomorrow.... stay tuned

Cheers,

The sky is falling! (C-Day)

2008-06-28T14:09:00.000-07:00

Well it started as a little joke in the office, about a month ago I said hey guys my vision is a little blurry. (insert instant diagnosis from colleges in the nearby cubicals.) And so it went for a few weeks. With me saying if this doesn't clear up next week I am going to the doctor. Well it didn't clear up. So I scheduled an appointment with an ophthalmologist thinking the worse ( detached retina). On Friday the 20th of June I went to the doctor, and after running through all the test with the optical assistant, she confirmed that I was having trouble seeing out of my left eye. Now time to see the doc, after peering into my virgin dilated eyes for about 5 minutes. I was informed that I did indeed have a detached retina and needed surgery immediately. Although I could not really see the look the doctors face as my pupils were dilated to the size of a dinner plates his tone spoke volumes to the seriousness of the situation. So a quick phone call to the retina specialist and everything was set. Drive about 5 miles up highway 159 and you will see the office on the left. Ok, I can drive, but I can't see the buttons on my phone to call Jennifer and let her know that I would be needing a ride home after the surgery. Well, after much fumbling about, I did reach Jennifer and tell her that I would need a ride, but I would call back after seeing the new Doc and getting more info..... ( oops... one way street, pay attention son your going to kill yourself before you get there). Ok after a false start I continued on to the surgery center, boy I hope they have a really big sign, because I can't see so well. Needless to say I Was driving about 10 miles an hour below the speed limit trying to make out the signs, but then there it was, a large sign in front of a non nondescript medical building "Laser Surgery" nice one, I made it.

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.