THRIVE

Paul's Daily Dose - I'm back!

Howdy,

 

I’m back!  Back home from another round of surgery, no, there was nothing malignant, but there were 7 rapidly growing tumors that my doctors needed to remove.  It feels great to be home, but there were moments over the last 14 days where the pain and discomfort were unbearable.  However, as a cancer Thriver, I have learned to count the victories, not the setbacks and my surgery last week was a victory.  A victory and a blessing that I share with my doctors, nurses and friends, most importantly Gretchen.  It was their strength, support, and love that carried me through and I am most grateful.

 

Thriving is a mindset in which one is careful to avoid regrets and embrace opportunity at every corner.  Yes, I have cancer, and that sucks, but things could be worse:  I could have allowed the illness to keep me away from my love of cycling.  I could have let the disease change me.  Instead, I have, and will continue to do my best, to define what it means to be a cancer Thriver.

 

For the past 11 years I have ridden in the Pan-Mass Challenge, a two-day, 192-mile cycling event that raises money in support of the Jimmy Fund and the Dana-Farber Cancer Institute.  The Pan-Mass Challenge has grown tremendously over time, and the event raised over $35 million last year, bringing their all time total to more than $238 million.

 

As a cancer Thriver, and now two time cancer surgery graduate, the 2009 Pan-Mass Challenge will be more meaningful than ever for me.

So on August 1^st, I will start my 12th Pan Mass challenge with my fellow riders of ‘Paul’s Posse’.  It is going to be harder because of my surgery, new chemotherapy regimen, and lack of training. But I am going to do it. 

 

I’ve taken this challenge seriously for these past 11 years, and I can tell you that now, more than ever, I want to be a part of the effort to search for a solution, and I am hoping that you want to be a part of it too.  Before my diagnosis, cancer was a concept, a bad thing that was happening to other people, a bad thing that I wanted to help stop.  Now, as a patient for the past two years, I understand the importance of the PMC on a whole new level.  Now, when I talk about hope on the roads of Massachusetts, it is no longer a conversation about the looks on the faces of the thousands upon thousands of supporters lining the route.  It is now a conversation about my own future, my own treatment, and the hope that new research will one day leave me cancer free.  For my part, I am asking myself to send out countless letters raising money, train hard and do the ride, and never stop hoping.  For your part, I’m asking you to make a pledge to the cause.

 

You’d be hard-pressed to find a more worthy and leaner organization.  In 2008, 100 percent of all funds raised by PMC riders went directly to the Jimmy Fund.  More importantly, as in 2008, when the members of ‘Paul’s Posse’ raised nearly $300,000, 100% of the money raised by ‘Paul’s Posse’ this year will go directly to support the work of my doctor, friend, and three time ‘Paul’s Posse’ member, Dr. George D. Demetri at Dana-Farber.

 

Your tax-deductible check can be made payable to PMC/Jimmy Fund and you can mail it to me. Alternatively, you can use your credit card to make a donation https://www.pmc.org/egifts/my egift ID is PS0036.  

 

I know these are tough financial times, but cancer doesn’t know we’re in a recession, so please donate what you can.

Gratefully,
Paul

Paul's Daily Dose - 5/4/09

Paul's surgery was more complicated than expected. The surgeon found and removed 9 tumors in 6.5 hours as compared to the original plan of removing the identified 3 tumors in 2.5 hrs.  Essentially, the “Chip Shot” turned into a “Par 5.” He weathered the surgery well and now faces the challenges of recovery. 

The good news is that the final pathology report confirmed what the doctor’s thought – all 9 were Desmoid tumors.  The plan of attack going forward seems to be a doubling of his current Gleevec dose!!!  Great news all things considered.

 

Paul’s recovery has been somewhat typical for such an extensive surgical procedure.  The first two days, Paul was feeling pretty good doing his laps around the hospital floor and having visitors.  These last few days have been more difficult and the level of discomfort significantly heightened.  The doctors assured us that his recovery is following the expected path.  Paul, too, recalls a similar cycle the last time around.  We anticipate his energy level to strengthen and his physical activities to increase.  With some luck, he might well be able to go home by weeks end. 

Thank you so much for your love and support. 

 

 

As Paul would say: Thrive on!!!

Thank you!

Gretchen

 

Paul's Daily Dose - surgery is over!

Paul's surgery was more complicated than expected. The tumors are likely desmoid as originally thought, but we are awaiting pathology which could take as much as 5 days (hopefully sooner.)

 

He weathered the surgery well and may be up and possibly walking before the day’s end.  As Paul has mentioned to more than a few of us - 64 laps around the hospital floor equals 1 mile. 

 

Paul is so thankful for all the love and support from all of you.  He feels very luck and blessed.

 

I will keep you posted. 

 

As Paul would say:

 

Thirive on!!!

 

Thank you!

 

Gretchen

Paul's Daily Dose - Medical update

OK, not so good news.

I don’t know if you are jonesing for the TV show “ER” or you find that “House” just doesn’t cut it (no pun intended). Well, here’s a new one “Paul goes back to the OR.”

All kidding aside, I am headed back to the OR.

Here is the scoop...
 
I had tests last week and my desmoid tumors continue to grow and need to be removed.  My doctors not wanting to waste any time, have scheduled me for surgery April 28th.  The procedure, which I hope will be followed by a speedy recovery, will not be as involved as my initial surgery.  To quote one of my doctors, this surgery is a "chip shot" (I am hoping he is a good golfer!).    
 
As I have said so many times before, I have wonderful doctors in whom I am totally confident. 
 
Thank you for your support and I Thrive on,
 
Paul

Paul's Daily Dose - Medical update

Good news!

 

As you know from my previous post, my tests came back positive for tumor growth.  Since then, I have had additional tests, I have received the definitive results.  Defying the odds, these new tumors are NOT a recurrence of GIST!  I have another growth; they're called fibromatosis or desmoid tumors. 

 

 

Desmoid tumors are somewhere in between truly benign tumors and the malignant tumors. Desmoids are not truly benign because they are locally aggressive, but they do not metastasize like malignant cancers. Long story short – Desmoids don’t grow like metastatic cancers but can cause associated problems due to their size and location.  As mine are inoperable, they are just going to monitor.

 

To quote Gary Schwartz, one of my amazing doctors:  "Paul, you dodged a bullet."  Needless to say I am very fortunate.  Thanks to everyone for your support. 

 

Thrive on,

Paul

Paul's Daily Dose - Medical update

Howdy,

 

To steal a line from Elton John, “The Bitch is Back!”

Yes, I am very sorry to report that my cancer has once again has shown its’ ugly face. 

A week ago, I had a PT/CT scan and got the disturbing news: “We saw something we don’t like”. 

 It’s a refrain you never get used to.   

The scans showed multiple growths in the abdomen that were not present 3 months ago. Subsequent tests confirm that my cancer has mutated and is now resistant to my current drug therapy.  As I have said so many times before, I have the BEST team of doctors and I am confident they will come up with a new “cancer cocktail”, as surgery is not an option. I know that they are going to do everything possible and you know that I will fight with everything I have.  I did not pick this fight with cancer, but it’s a battle I will win.

As a cancer Thriver, I have learned to count the victories, not the setbacks.  Last year, I finished the NYC marathon for the second time, and the PMC for the 11th.  This year, I hope to complete my 12th PMC, but may need to compete in a different sort of marathon between now and then.

 As always, I will draw more strength than you can imagine from the support my friends my original diagnosis, and for that I remain eternally grateful.

 Thriving is a mindset in which one is careful to avoid regrets and embrace opportunity at every corner.  Yes, cancer is back, and that sucks, but things could be worse:  I could have allowed the illness to keep me away from the marathons, the triathlons and the PMC.  I could have let the disease change me.  Instead, I have, and will continue to do my best, to define what it means to be a cancer Thriver.

I Thirve on,

Paul

Paul's Posse rode again - and raised over $67k

Thank you!

Cycle for Survival was a huge success exceeding the fund-raising goal of $1.2 million.  Thanks to you – Paul’s Posse collectively raised over $67,000 of that total.

Profound and inspirational – such a large group of people with varying backgrounds spinning together for some part of eight hours in complete solidarity with a singular goal and wish - to combat cancer (orphaned cancers, more specifically).

I am pleased and honored that two of my doctors from Memorial Sloan Kettering (“MSK”) not only showed up but actively participated, breaking a sweat in both cases!  It was remarkable how many thankful patients, family members, and friends approached them and recalled their ‘story’ – a story encompassing great care, hope, and the best science & research focused on curing cancer.  As a MSK cancer THRIVER, the event was overwhelmingly emotional and simultaneously energizing.  

So, thank you so very much for your generous contribution.  As I said in my solicitation, every dollar counts, every dollar makes a difference, and every dollar yields ever increasing possibility.  

Thrive on,

Paul.  

Paul's Posse rides again! (sort of)

Howdy,

 

On Sunday, January 25th I will be participating in 'Cycle for Survival', an indoor cycling event benefiting lifesaving cancer research at Memorial Sloan-Kettering (MSK).  I am joined by others and especially my dear friend and doctor at MSK, Gary Schwartz.  I think the following letter Gary wrote is very compelling as to why we need your support.

To my patients and their families:

If you are reading this letter it is either because I have taken care of either you or one of your family members at Memorial Sloan-Kettering Cancer Center in New York.  I am writing to you now to ask for your help.   This year we are facing huge cut-backs in federal funding for cancer research.   As Chief of the Melanoma/Sarcoma Service and as Director of the Laboratory for New Drug Development, I have led a major effort to find new treatments for patients with cancer.   This includes patients with cancers of the skin, soft tissue, as well as cancers of the gastrointestinal tract.    Based on these laboratory efforts we have launched many new clinical programs at MSKCC.   Some of you may have benefited from them.   The future success of this cancer research program will depend on continued research funding.  

In order to raise cancer awareness and to raise the money we need to sustain our cancer research efforts, on Sunday January 25, 2009 I will be participating in an indoor cycling event called "Cycle for Survival".  I will be part of cycling relay team to benefit MSKCC. This event will be held at Equinox health clubs throughout New York.   Two hundred bicycling teams will be pedaling their hearts out to raise money for cancer research. This year it has been determined that a large share of this money will go directly to my laboratory and clinical research program. 

One of my patient's, Paul Schaye, will be the captain of my relay team.  Paul is an amazing person.   He is a patient with a gastrointestinal stromal tumor (GIST) who is on the drug called Gleevec.  This last year he underwent major surgery to remove this cancer from his stomach as well as from his liver.  Today he is cancer free.   What is truly remarkable about Paul is that he just completed the New York City marathon! 

On January 25th, Paul and I will be biking for you and our MSKCC family.  I am closing in on my 19th year at MSKCC.  Never once have I written a letter like this and never once did I ever envision that I would have to do so.    But, desperate times require desperate measures.

Thank you in advance for supporting our efforts in our fight against cancer,

Sincerely,

Gary K. Schwartz, MD

 

The following link is a clip of Gary discussing his research and the Spin event.

Fox News - Cycle for Survival

If the text above does not appear as a clickable link, you can visit the web address:

http://www.myfoxny.com/myfox/pages/InsideFox/Detail?contentId=8295607&version=1&locale=EN-US&layoutCode=VSTY&pageId=5.2.1

 

I know the holidays are just days behind us, and I realize the economic environment is less than optimal for most of us.  That said, I would be so grateful and appreciative if you would consider making a contribution to this event. Every dollar counts, every dollar makes a difference, and every dollar yields ever increasing possibility.  

To make a donation please Click here
If the text above does not appear as a clickable link, you can visit the web address:

http://mskcc.convio.net/site/TR/CycleforSurvival/AG_Cycle_Event?pg=personal&fr_id=1050&fr_id=1050&px=1156161

 

Click here to view the team page for Paul's Posse

If the text above does not appear as a clickable link, you can visit the web address:

http://mskcc.convio.net/site/TR/CycleforSurvival/AG_Cycle_Event?pg=team&fr_id=1050&team_id=4120

 

Thank you so much for your support. 

Thrive on,
Paul

 

 

MISSION ACCOMPLISHED!!!

I did it; I made it to the finish line of the New York City Marathon!

The single most overwhelming feeling that I felt coming over the line was gratitude and yes, relief. Hey, 26.2 miles is a long way!

I could not have done it without the support of my dear friends and more importantly my ‘running’ Posse of Fran, Jim and Liz. They accompanied and cajoled me to the finish line. Their encouragement, threats, jokes, and love, got me through the race.

Your support on this journey is very much appreciated. I am amazed how many of you continue to read all of my emails/posts, and I am very grateful. I cannot put into words how your friendship has touched me. Thank you so very much.

Thrive on,

Paul

Here is more: Schaye – New York Post November 2, 2008

"Paul's Daily Dose" - October 2008

Howdy –

Well, it's been two years since I was diagnosed with Cancer and almost a year to the day that I had my surgery. What better way to celebrate my miraculous recovery than to take a VICTORY LAP through the 5 boros of New York? That's right, I am running the New York City Marathon.

Two years ago when I ran my inaugural marathon, I had company (aka 'Paul's Posse') run with me along the route. We had such a great time that I'm reviving the tradition.

Come and join me in this year's marathon as a relay runner. As a relay runner, no one person has to cover any great distance (and trust me, I won't be going very fast). So, if you happen to be in New York City, please let me know if you would like to join me and be in 'Paul's Posse'.

Thrive on!
Paul

Paul's Posse - Leah Demetri's thank you letter

This is a letter from Leah Demetrie (George's Daughter from Dana-Farber)

 

Dear Paul,

I just thought I'd share with you the letter I wrote to the people who supported me for the PMC. It was an honor to meet you, and it was truly inspiring for me to ride with you and the Posse. Everyone on the team was incredibly supportive, and I can't wait to do it again next year!

Though the weekend of August 1st may have come and gone, I wanted to thank you for supporting me in my quest to ride the Pan-Mass Challenge this summer. It was by far one of the most memorable experiences of my life.

Let me start by giving you glimpse of my experience at the PMC. On Friday night of PMC weekend, I attended the event’s opening ceremonies in Sturbridge where the ride would commence the following morning. I found myself surrounded by an enthusiastic crowd of doctors, cancer survivors, those who have lost loved ones to the disease, and my own co-workers from the Dana Farber. It wasn’t until that moment that I realized just how incredible it is that a single event can bring together such a diverse group of people, all fighting together for the common goal of curing cancer. As I listened to the various speakers tell their stories that night, I was moved to tears. But don’t get me wrong – the tone of the night was certainly not melancholic. Instead, it was full of hope and energy, for as I learned, that’s what this ride is all about.

The next morning, however, I was beside myself with nerves. When we lined up with our bikes at 6am to begin the ride, it finally hit me just how unprepared I was. I may be athletic, but my training had consisted of a few rides on my mountain bike combined with a whopping total of just 50 miles on my road bike. The farthest I had ridden in one go was 20 miles, and this was no 20 miles – I now had 192 to face in the coming hours. Amazingly, I managed to push aside the butterflies in my stomach, clip in my shoes, and start pedaling.

At the second water stop, I was still feeling great, but it was the long stretch to the lunch stop that really got me. After almost 70 miles, my hamstrings began cramping up, I dropped one of my water bottles in the road along the way, and I had long ago been separated from my dad. I wasn’t in the best of shape when I finally arrived at that third stop, but I certainly wasn’t ready to give up. With a couple of bananas, a little stretching, and a whole lot of Gatorade, I was back out on the road in less than an hour, this time with a new agreement to stick with my dad all the way to Provincetown. And what a difference it made. We may have taken it slow, but encouraging one another through all the steep hills and the impending exhaustion, we both made it to Provincetown in high spirits.

Another moving aspect of the event came from riding with "Paul’s Posse," a group who has come together in support of one of my dad’s patients. Having ridden in the PMC long before his own diagnosis of cancer, Paul has been an avid supporter of the event for years. Despite recovering from surgery just a short 9 months ago, Paul rode once again this summer, for he is not one to stand by and watch. His courage was truly inspiring to me. He made sure the team stuck together, and it was quite an experience to finish in Provincetown with the entire Posse by my side.

As I learned from riding with my dad and the Posse, what really got me through this ride was the love and encouragement of my friends, family, and everyone who cheered me on during the ride. Without you, I would have never been able to accomplish such a feat. I never believed I would be able to reach the fundraising minimum of $4,000. "I’m only 17, I don’t even know that many people!" I told my parents. But thanks to you, I raised nearly $6,000! Together, we have been able to truly make a difference, and I can’t wait to get right back on my bike and do it all again next summer.

Love,

Leah

Paul's Posse Pan-Mass Challenge 2008

Howdy,

I want to take a moment to thank each of you for once again riding in this year’s PMC and for supporting Paul’s Posse.

Just a year ago we pulled together as a team forming Paul’s Posse in support of me and my formidable battle with cancer. This year we rode together again, my cancer arrested, and our bond and determination stronger than ever.

I feel so very fortunate and blessed that I was physically able to complete my 11th PMC with all of you considering just a short 9 months ago I was recovering from surgery and a very uncertain future. Each day is an absolute blessing, and I am so very thankful.

While we certainly ride for the common good, we ride as a team united in solidarity honoring our friendship and unyielding passion to help eradicate cancer. The PMC is unquestionably a reaffirmation of the human spirit. I cannot help but hope that this collective support and focus will be rewarded someday soon with cures.

Though we exceeded our quota for crashes, broken bones, stitches, and road rash, the Posse’s spirit remained undeterred and everyone is ‘on the mend’ without serious injury. I�am thrilled to report that as of this moment we have collectively raised more than $250,000.� Wow!!! Incredible!!!

Thank you so very much for your wonderful friendship.� Looking forward to riding with all of you next year and for many many years to come.

Thrive On,

Paul

�

Great news! Paul's Daily Dose - FINAL EDITION!

I have great news. I had my first PT/CT scan last week since my surgery. They saw no evidence of disease! Nada, Nothing, Zilch. I am very grateful. I will continue taking my chemotherapy as a preventative measure, and be monitored.

Overall, I am a very lucky guy and I am Thriving,

Thank you for your interest and support.
Paul

Paul's Daily Dose - Pan Mass Challenge

Howdy ,

Well, it has been 1 year, 4 months, and 1 day since I was diagnosed with Cancer and 3 months, 22 days, 1 hour, 51 minutes, 15 seconds since I had my Cancer resection surgery (but who’s counting?). I feel great and my prognosis is very positive. I am Thriving.

As you know, for the past 10 years I have ridden in the Pan-Mass Challenge, a two-day, 192-mile cycling event that raises money in support of the Jimmy Fund and the Dana-Farber Cancer Institute. The Pan-Mass Challenge has grown tremendously over time, and raised over $32 million last year, bringing the all time total to more than $204 million.

Now that I am a “Thriving” cancer patient, the 2008 Pan-Mass Challenge will be more meaningful than ever for me. In the past, I always rode to help raise money for cancer research, but I never imagined I would ride as a possible beneficiary of that research.

As for the ride itself, I am again making the trip with a group of friends who are known on the road as “Paul’s Posse.” All the money we raise will again go directly to support the research of Dr. George D. Demetri, the world’s leading authority on GIST, the type of cancerous tumor that found its way into my body. I have even convinced George, to ride in the PMC again!

Therefore, on Aug. 2nd, I will start my 11th Pan Mass challenge. Similar to the 2007 PMC, it is going to be harder because of my illness and my treatment, but I am going to do it.

I’ve taken this challenge seriously for these past 10 years, and I can tell you that now, more than ever, I want to be a part of the effort to search for a solution, and I am hoping that you want to be a part of it too. Before my diagnosis, cancer was a concept, a bad thing that was happening to other people, a bad thing that I wanted to help stop. Now that I am a patient, I understand the importance of the PMC on a whole new level.

Now, when I talk about hope on the roads of Massachusetts, it is no longer a conversation about the looks on the faces of the thousands upon thousands of supporters lining the route. It is now a conversation about my own future, my own treatment, and the hope that new research will one day leave me cancer free. For my part, I am asking myself to send out countless letters raising money, train hard and do the ride, and never stop hoping. For your part, I’m asking you to make a pledge to the cause.

You’d be hard-pressed to find a more worthy and leaner organization. In 2007, 100 percent of all funds raised by PMC riders went directly to the Jimmy Fund. More importantly, as in 2007 when the members of Paul’s Posse raised nearly $500,000, 100% percent of the monies raised by Paul’s Posse this year will go directly to the Dr. George D. Demetri at Fan-Farber.

I truly believe somewhere along the road between Sturbridge and Provincetown lies a cure for cancer, maybe even for me. You can help us find it.

Your tax-deductible check can be made payable to PMC/Jimmy Fund and you can mail it to me. Alternatively, you can use your credit card to make a donation on line http://www.pmc.org/mypmc/profiles.asp?Section=story&eGiftID=PS0036 . If you have questions please do not hesitate to or e-mail info@chestnuthillpartners.com.

Thanks for joining the battle.

Thrive On,
Paul

Paul's Daily Dose

Howdy all,

I had a CT scan last Friday and as one of my doctors said to me, “your liver looks great”, (He was looking at my good side). I continue to take Gleevec and the next major milestone will be a PT/CT scan in two months. Maybe then, I will be allowed to have a glass of wine.

Considering that my surgery (that was a hellish experience) was just three months ago, I am feeling strong. It is great to back at the gym and training. Just this past weekend, I completed a two-hour spin and ran 5 miles the weekend before. It is a matter of getting in shape for the Pan-Mass Challenge, that is just around the corner. Hey, I may even give the New York Marathon another go.

Overall, life is great and I am a very lucky guy.

I Thrive on,
Paul

Paul's Daily Dose

Howdy,

I am getting my energy back (a little everyday). I wish my recovery was faster; however, my doctors are pleased and implore me to have patience (something I do not have a lot of). I actually started going back to the gym, and I am doing light training. Not ready for an Ironman, however, I could handle a few loops of Central Park on the bike.

Overall, I am a lucky dog.

Thrive On,

Paul

Paul's Daily Dose- Happy Holiday's & Happy New Year

Howdy,

Gay joins me is wishing you all the best for the Christmas season and good health in the New Year.

It's been 7 weeks since my surgery and it was projected that I would be back in training in 4-6 weeks. Well, I may have had some irrational exuberance, as I am still on home rest.  Luckily, I have a healthy stash of good books and I expect to be back at work after the first of the year.

I am an Ironman (maybe Ironman light, as I am 20lbs lighter).

Thrive on,
Paul

Paul's Daily Dose

Howdy,

Well, it has been one month to the day that I had my surgery.  It has been the best of times and the worst of times (sorry Dickens).  I have been so fortunate that Gay was not only with me during my hospitalization, but she has also been with me during my home bed rest.  How nice is that.

My doctors are very pleased with the progression of my recovery and they keep stressing patience (something that I’ve always had in limited quantity).  I’m told I won’t feel totally normal for about five months.  My days consist of “muffies” (MFES or Meds, Food, Exercise, and Sleep) three times a day.  I had to come up with something to remember what I should be doing.  Hey, I know it’s not a lot to look forward to but in reality it is. 

One of the things I miss is seeing New York City in its holiday splendor.  The smell of chestnuts from street vendors and the wonderful sparkle of Christmas lights is a joyous experience.  This is minor in the scheme of things as I expect to enjoy many more holidays to come.

Wishing you a great holiday season and a Happy New Year!

Thrive on

Paul

Paul’s Daily Dose - Home for the Holiday

Howdy,

After being hospitalized for 12 days at MSK, being home for the Holiday, is something I will never take for granted again. Please don’t get me wrong, all the staff, be it nurses, housekeeping, phlebotomists, room service personnel, and doctors were exceptional! However, there is just no replacement for sleeping in one’s own bed and all the comforts that it brings. The one thing that made my stay remarkably tolerable was that Gay was with me 24/7. Talk about a trooper, here I am sleeping on a super deluxe hospital bed and Gay is sleeping on a chair that has a seat cushion that extends. (She is also delighted to be sleeping on a bed too).

I want to emphasize again the incredible results of my procedure. Prior to surgery, the game plan was to get as much of the visible tumors as possible and those that were unresectable would continued to be treated with chemo. However, my “A team” of doctors “GOT THEM ALL”. My doctor at MSK is one of a few people in the world who would have attempted such a difficult procedure. As he says, operating on the liver is like operating on Jell-O (it’s a moving target and very fragile). I will continue to take my chemo and be closely monitored, but I can now say with incredible joy, “I am NED (no evidence of disease). This is a glorious Thanksgiving.

Please join us in counting our blessings and giving thanks. More importantly, please pause today and give thanks for the wonderful things you enjoy.

Thrive on,
Paul

Paul's Daily Dose

Howdy,

“He’s back”……..well sort of. I have exchanged my IV, Oxygen, and blood tests for emails, WindowsXP, and wifi. If all goes well, I hope to be Thriving at home by tomorrow or Saturday.

All my doctors are very, very pleased with my surgery! My vital signs, stomach and liver functions continue to improve, and I get stronger everyday. My pathology report came back yesterday. As a result of my shrinkage from Gleevec (my chemotherapy), and this past week’s aggressive surgery, I am now NED (no evidence of disease)! THIS IS GREAT NEWS. Next week, I will resume taking Gleevec, and let this miracle drug continue to work its’ wonders (I hope for many years come). In addition, for the next 6-8 weeks, I will be restricted to minimal physical activity, and once my medical “A-Team” permits, I hope to start training for a triathlon 3Q 2008. (Just thinking about training again, is a delight.

Gay and I are so grateful for your most generous support, it’s a wonderful blessing.

I Thrive ON!

Paul

Paul's Progress - Eating sorbet

Hi all,

Paul had a quiet weekend resting. His doctors say his body has just figured out it has 3/4 of a liver to replace so it's busy on the mend. He has been given the greenlight to eat sorbet and we hear oatmeal is just around the corner!.
Thanks for your support, it means a lot to us.
Love
Gay

Paul's Progress - Ice chips and strolls

Hi all,

Paul is doing great. He's been up twice for a little stroll today. He's even advanced to ice chips!

When he's awake I let him know you've sent your regards.  This is very comforting to him (and to me) so thank you all.

Will be in touch,
Gay

Paul's Progress - Out of Recovery

Hi all,

Paul is doing great. He's been moved out of Recovery and is resting comfortably in his room. We've been advised that he's not to have visitors until Friday PM (standard procedure I'm told).

Will keep you posted!

Gay

Paul's Progress - Surgery is over

He's done!

Just had my consultation with Dr. DeMatteo and "there were no suprises". In other words it went very well.

Dr DeMatteo says there's recovery to accomplish before celebrating just yet, but was pleased with the surgery.

So, he's off to Recovery and I'll see him in a couple of hours.

Love,
Gay

Paul's Progress - November 6, 2007 12pm

Mary Ann, our Perioperative Liason, has just reported that Paul is stable and doing well.

They've removed his gall bladder (standard proceedure even when its not problematic), the sections and wedges from the liver and are moving to his stomach.

They had said it would be seven hours but this progress leads me to beleive it will be shorter.  We'll see.

Thank you all for your support. It makes all the difference.

I'll keep you posted!

Love,
Gay

Paul's Daily Dose -Rain Washed

The following story was sent by a dear friend.

Thrive On,

Paul

Rain Washed
Author Unknown

A little girl had been shopping with her Mom in Target. She must have been 6 years old, this beautiful red haired, freckle faced image of innocence. It was pouring outside. The kind of rain that gushes over the top of rain gutters, so much in a hurry to hit the earth it has no time to flow down the spout. We all stood there under the awning and just inside the door of the Target.

We waited, some patiently, others irritated because nature messed up their hurried day. I am always mesmerized by rainfall. I got lost in the sound and sight of the heavens washing away the dirt and dust of the world. Memories of running, splashing so carefree as a child came pouring in as a welcome reprieve from the worries of my day.

The little voice was so sweet as it broke the hypnotic trance we were all caught in, "Mom, let's run through the rain," she said. "What?" Mom asked.

"Let's run through the rain!" She repeated.

"No, honey. We'll wait until it slows down a bit," Mom replied.

This young child waited about another minute and repeated, "Mom, let's run through the rain."

"We'll get soaked if we do," Mom said.

"No, we won't, Mom. That's not what you said this morning," the young girl said as she tugged at her Mom's arm.

"This morning? When did I say we could run through the rain and not get wet?"

"Don't you remember? When you were talking to Daddy about his cancer, you said, 'If God can get us through this, he can get us through anything!'"

The entire crowd stopped dead silent. I swear you couldn't hear anything but the rain. We all stood silently. No one came or left in the next few minutes. Mom paused and thought for a moment about what she would say. Now some would laugh it off and scold her for being silly. Some might even ignore what was said. But this was a moment of affirmation in a young child's life. A time when innocent trust can be nurtured so that it will bloom into faith.

"Honey, you are absolutely right. Let's run through the rain. If God let's us get wet, well maybe we just needed washing," Mom said.

Then off they ran. We all stood watching, smiling and laughing as they darted past the cars and yes, through the puddles. They held their shopping bags over their heads just in case. They got soaked. But they were followed by a few who screamed and laughed like children all the way to their cars.

And yes, I did. I ran. I got wet. I needed washing.

Circumstances or people can take away your material possessions, they can take away your money, and they can take away your health. But no one can ever take away your precious memories... So, don't forget to make time and take opportunities to make memories everyday. To everything there is a season and a time to every purpose under heaven.

I hope you still take the time to run through the rain.

Paul's Daily Dose

Boo (Happy Halloween),

The “big event” (my surgery) is just around the corner (November 6th). To quote the old song from Peter, Paul & Mary, “well my bags are packed, and I am ready to go”, as I am off to Memorial Sloan-Kettering.

My doctors expect the procedure to take about 6-8 hours and I will be hospitalized for 10-14 days, (I was told there are no awards for getting out early). Then it is onto 4 weeks of bed rest. Hmm, we’ll see how long that lasts, as I know I have to start training and sign up for an event in 2008!

Gay will be on guard at the hospital, and will be reachable via email. (After my procedure, Gay will give an update)

I Thrive on,

Paul

PS. Last night I went to the actual floor where I am staying at Memorial Sloan Kettering to check out the place. They said 16 laps of the floor = 1 mile (that just warms my heart).

Paul's Daily Dose

Howdy,

It was my birthday yesterday and last night I was lamenting to Gay that this is the first time I do not have an athletic event scheduled. For the past 15 years, I have trained for something, be it the NYC Marathon, Pan-Mass Challenge, Mt. Washington Bicycle Hillclimb, Paris-Brest-Paris, AIDS rides and numerous triathlons (yes, I am crazy)!  I guess they have all been preparing me for my most difficult challenge, cancer.

In the past, I have had my wonderful wife Gay, fabulous friends, and a great team of coaches supporting me in my endeavors.  Thankfully, I am able to add an incredibly devoted  A-team of doctors to the list.  I am fully confident that I will again meet this challenge and with everyone’s support, I will continue to Thrive.

My surgery is scheduled for Tuesday, November 6th.. I will be at Memorial Sloan-Kettering, 1275 York Avenue, between 67th and 68th Streets and the Patient Information Desk number is 212-639-7081.

My doctors expect the procedure to take about 5 hours. I will be hospitalized for 7 days and then on 4 weeks of bed rest. Hmm,  we’ll see how long that lasts, as I know I have to start training and sign up for an event in 2008!

I Thrive on,

Paul

Paul’s Daily Dose

Howdy,

After having multiple conferences and deliberations over the last two weeks with my “A-team” of doctors, they have reached a consensus that I should have surgery.  After carefully considering all of the pros and cons, I have decided to accept their recommendation. This was not an easy decision, as they can not fully resect all 15 of my tumors. The strategy is that if the “cancer load” is reduced, I have less of a chance building up resistance to Gleevec; and therefore better survivability.  I am targeting the beginning of November to have the operation; so unfortunately, Paul's Posse will need to wait until the 2008 NYC marathon.

As I have said, cancer sucks, but I Thrive on.

Paul   

Paul's Daily Dose

Howdy, it’s been close to a year since I was diagnosed. I feel great and I am Thriving.

I had PET, CT scans last week, and my doctors are delighted.  The PET scan is negative (completely cold) and the CAT scan shows that my largest liver lesion is in fact smaller on this scan (which is very good news), and the other liver lesions are stable (there are 14 lesions in all). At this time, I do not have a consensus with respect to undergoing major surgery or “Stay the Course” (hmm….this is one case where it might make sense).  Over the next few weeks, we’ll have a conference call and sort this out. Stay tuned.

I have the Mighty Hamptons Triathlon this coming weekend and continue to train for the NYC marathon.  Like last year’s marathon, we are assembling a group of “tag along” runners (Paul’s Posse).  Each runner will relay with me from the start to the finish.  As a relay, no one person has to run any great distance (and trust me I won’t be going very fast). For those not tagging along, we’ll have a “cheering point” on 1st Avenue.

We will have Paul’s Posse running jerseys and after the race, and we’ll meet at a local wine bar bistro for a post race celebration.

If you are in New York City and would you like to be part of “Paul’s Posse” or join us for the post race? If so, let me know so we can plan accordingly.

As one of my doctors said after completing the Pan-Mass Challenge, let’s “Posse up”.

The following poem was sent to me last year just before I was diagnosed. I may have shared it with you before, but I thought it is worth revisiting.

(Be sure to read it all the way through)

Around the corner I have a friend,
In this great city that has no end,
Yet the days go by and weeks rush on,
And before I know it, a year is gone.

And I never see my old friends face,
For life is a swift and terrible race,
He knows I like him just as well,
As in the days when I rang his bell.

And he rang mine but we were younger then,
And now we are busy, tired men.
Tired of playing a foolish game,
Tired of trying to make a name.

"Tomorrow" I say! "I will call on Jim
Just to show that I'm thinking of him."
But tomorrow comes and tomorrow goes,
And distance between us grows and grows.

Around the corner, yet miles away,
"Here's a telegram sir," "Jim died today."
And that's what we get and deserve in the end.
Around the corner, a vanished friend.

Remember to always say what you mean. If you love someone, tell them. Don't be afraid to express yourself. Reach out and tell someone what they mean to you.

Because when you decide that it is the right time it might be too late. Seize the day. Never have regrets. And most importantly, stay close to your friends and family, for they have  helped make you the person that you are today.

Thrive on,

Paul