Thursday, October 16, 2008

The Story and Status - 10-16-08

This is an awesome idea that a few people had, including Matt who set this up for me. So for anyone who is interested, let me tell you the short version of the story and where we are at right now. I plan on updating this on a daily basis (if enough people look at it!) and I would love your comments. Between the tests, treatments and all the other stuff that's ahead I will need something to do in between! So here is what's going on as of today:

For the last 18 months I have been having weird feelings...palpitations, pains, dizziness, racing heart, etc. I was persistent as during all this I have logged three trips to the emergency room, three trips to the cardiologist, two stress tests (stress echo cardiograms), a trip to a pulmonary specialist, a sleep study and maybe 10 trips to my family doctor complaining of various pains or annoyances. Most of the time I heard the same thing....young, healthy, strong, etc, etc. On Sunday (10/12) my grandmother passed away in the morning and it was a sad day for all of us. I was sitting at my Aunt's house with the family when I decided the chest pain I have been having for the last 18 hours was something more than a muscle strain (as it was diagnosed a few weeks ago) and Shana and I went to the ER. After complaining about the same thing again and 3 hours of tests, waiting and more tests, my life changed.


The physician said a lot to me but the only words I heard were "strange mass pushing up against your heart" and "we haven't ever seen anything like it". My head spun as I heard these words and I looked at Shana and she was just as stunned as I was. My cardiologist (Dr. Gorman) explained to me and my family that this was serious and though he didn't know what it was it needed immediate attention and I had to be admitted. All didn't seem so bad though as I was told that I would likely need open heart surgery to remove this mysterious "mass" and 29 year olds fly right out of this kind of surgery. Around 9PM that night Dr. Gorman returned to make bad news worse. A radiologist had further examined my CT scan and found lesions on my sternum and one of my vertebrae and this was likely NOT a problem to be dealt with by a cardiologist. After undergoing a biopsy of bone tissue in my sternum (chest), I had two more CT Scans, an MRI (that lasted 1 hour and 40 minutes) a full bone scan, a few x-rays and an ultrasound.


The initial diagnosis is a cancer called angio-sarcoma and according to the doctors it is aggressive and stage 4 as it has spread from it's initial location (my heart). This type of cancer is so rare that only a few places in the country can evaluate and treat it so I was put in an ambulance and sent to Brigham Women's hospital in Boston (nice 5.5 hour drive in an ambulance) to begin treatment at Dana Farber. My doctor mentioned something that I can't stop thinking about. Angio-sarcoma in the heart is extremely rare and he said there are around 200 cases of this in the US each year. I should know more about the specifics of my case over the next two days as the doctors here do their tests. They believe the initial diagnosis is accurate but are taking a second look just to be sure, so I guess my situation can change once they are finished with their analysis. But as of right now my doctor thinks that he can treat this and that I can fight it and though it won't be easy or painless, he believes I have a good chance to pull through this and so do I. I have been hospitalized since Sunday and will remain hospitalized until cleared by a cardiologist to go home. Since this sarcoma has grown both inside and outside my heart, I need to be under constant cardiac monitoring as I have developed some issues with my heart rate and rhythm. That's why I had to be transported to Boston in an ambulance.

I have to thank everyone for the unbelievable outpouring of support I have received the last few days. In just 3.5 days I had over 50 visitors at the hospital and hundreds of emails and texts checking in on me from friends, family, co-workers and people I don't even really know. Shana and I have had so many people to lean on the last few days I don't even know what to say except that we have the greatest family in the world and some of the greatest friends in the world. I know I couldn't do this without them and without Shana, Mom, Dad, Matt and Liz who have given me so much strength. Thanks everyone - your support has motivated me in ways that only I can understand.

I have to say I am both anxious and excited to get started tomorrow (Friday). I will meet the "dream team" of surgeons, oncologists, radiologists and cardiologists who will be mapping my course to recovery. Not sure yet what that will look like but I am ready to take this on and I am going to win.

40 comments:

jennoonan said...

Will -

We're all behind you 100%!!!

Dana Farber is a wonderful hospital and they won't let you down!

Sending good thoughts your way!
Jen Noonan

Anonymous said...

I have everyone i know praying for you! youre so strong and i know youre going to get through all this!

Love,
Sarah Egan

Sandi Cooley said...

Will - stay strong! You have lots of folks out here pulling for you and sending our strength.

And I knew the Kintera project was a pain but don't you think this is an extreme way to get out of it :)

Sandi Cooley

SelkeGirl said...

Will -

I know you will get through this! Your positive attitude and a strong desire to "win" are your greatest assets.

Keeping you in our thoughts and prayers.

Rae Swisher

Lynn Orlandella said...

Hi Will, I wish I could think of any words to say other than we will be with you all the way on this one. Your positive attitude and support system will take you farther than you know! You and Shana are constantly in my thoughts and prayers. I love you guys! <3
Love,
Lynn

PS-the blog is great and I think as long as you can you should keep it up! :)

Amit Chitre said...

Hi Will,

I've been thinking about you a lot over the last few days. You've got a strong heart and I know you'll pull through this with flying colors.

By the way, I'm still going to come to you for Fantasy Football advice. My team is in second place at 4-2. I'm going to need your expertise to close out my season.

Stay strong. Stay positive. And please call or e-mail me anytime you want to talk.

Amit

Rod said...

Hey Will,

I have NO doubt in my mind that you will pull through this like a champ.
You are in my thoughts and prayers. We will see you in Dallas soon. Take good care friend.

Rod Khan

Liz said...

Will - I can't believe it!
I know you will be fine - between the docs and your positive attitude you will beat this.

I will be keeping you in my thoughts and prayers and checking back here often for updates

Liz Culotta

Liz said...

Will - I can't believe it!
I know you will be fine - between the docs and your positive attitude you will beat this.

I will be keeping you in my thoughts and prayers and checking back here often for updates

Liz Culotta

Joyce said...

Hi Will & Shana,
So happy to have this as a way to keep updated on your progress. I know how important a positive attitude is in this battle and I am sending lots of positive energy your way. I have added you to the prayer network at church. I love you both and can't wait to see you again. Thanks again and all my love,
Ajima Joy

Ashley Lotito said...

Hi Will - I don't think we've ever met, but I work in the Rochester office. I just want to tell you that you are in my thoughts and prayers and you can beat this. My fiance's brother fought and beat Ewing Sarcoma as a teenager so stay strong and never give up! Stay positive and know you have so much support - from your family, friends and even strangers like me!

Ashley Lotito

karen.wilson said...

Hi Will,

You're the best so I have not doubt you shall overcome. My thoughts and prayers are with you and I'm sending you all the positive stuff I can muster up.

Take care,

Karen

jim powers said...

Will,

Best of luck man, I know that you guys will get through it just keep the eye of the tiger and the heart of a champion!!

On a lighter note, this will be no excuse for when you are back and healthy and get to watch as I make my comeback and am crowned the champion in fantasy football.

You and your family are all in our thoughts and our prayers and will be keeping up on the blog, which is a great idea. Good luck with the "Dream Team" make sure you have them distinguish who is Michael, Magic, Bird, Barkley...and Christian Laettner.

"You're gonna have to go through hell, worse than any nightmare you've ever dreamed. But when it's over, I know you'll be the one standing. You know what you have to do. Do it." - Duke (Rocky's Trainer) from Rocky IV

With Love,
Jim Powers and family

Beartooth said...

Hooray, there's our man! I'm so glad this blog has been started. Thank you.
The Militi's are rooting for you, Will!

Beartooth said...

oops, the above post is from me, the michelle part of the militi's.
((((((((hugs hugs)))))))

michelle m

James Rosales said...

Will

We are pulling for you like you would pull for the Oragemen!

We expect to see you back in Dallas when you get better!

Praying for you brother!

James Rosales

Paula Gage said...

Hi will,
Thank you so much for sharing this with all of us so we can become your cheering squad! I will be praying for you and your family (and your dogs) and sending good healing thoughts your way.
XXXOOO
Paula Gage
Binghamton, NY

Katie White said...

Will - we are all pulling for you here in Dallas. My thoughts and prayers will be with you and your family as you fight this! I admire your positive attitude and know it will make a difference.

Katie White

Danny said...

Hi Will I have been thinking about you quite a bit since your email. Thanks for the blog. It was a great idea and I will be following it for updates. Get better soon so you can come help me with this project! :)

Anonymous said...

Will -

I'm trying to get over the shock! I will send good thoughts your way daily and am so glad to be able to check in through your blog.

Stay strong and don't lose your sense of humor - it's the best recovery tool. We will miss you on the 360 project and are all with you in spirit!

Cindy Dout

Anonymous said...

Will & Shana,

You two are the strongest team we've ever encountered. We're all your cheering section. Maria's your little cheerleader. You go the distance and do not look back. Look forward, work hard, and get back to us soon. We are here for you both. We love you two so much. The blog is the best!!

All our love,
John, Chris, Nate & Maria

Kerry McCone said...

You story has spread like wild-fire! My heart goes out to you and you will be in my thoughts and prayers. Keep up the GREAT attitude and remember to lean on your family and friends. That's was we are here for! Best of luck for a speedy recovery.

Kerry McCone

marc fresina said...

Will-
You are in my family's thoughts and prayers. If Matt, Liz, and I could'nt take you down when we were young, then neither can this.

Linda McManis said...

Hi, Will. Love your blog, and it will keep you from having to send us individual update messages. You have a lot of people praying for you and rallying around you for whatever you and Shana need. Best of luck, and I am counting on seeing you in Dallas soon.

Linda Mc

Pam Tarquinio said...

All of us in the Poughkeepsie office are rooting for you!

Lots of good thoughts and prayers are flowing to you!

Pam Tarquinio

Mildred said...

Will,

When I heard the news about the challenge you are facing I was speechless. You are in my thoughts and I wish you strength as you head down this road. Its good to know you have such a wonderful support system which will I know will help get you through this.

Mildred Winslow

Anonymous said...

Hey buddy, hope todays going ok for ya. Looking forward to your call later on tonight. I am bringing your hard hat to the game on Sunday..I will put it in your seat..I hope we roll them just for you. I will try not to drop my turkey sausage on the dirt this week hahaha. I will be thinking about ya every second! Cant wait to see ya in Beantown on Monday night. How bout them sox huh? hahaha your probably loved it! Your parking spot and wegmans will be left alone till you get back to work. Cant wait, we all miss ya and we are all thinking about ya. I will talk to ya later on 2night.

Love ya Cuz
Bryan

12th man...Were gonna need ya Sunday!

Anonymous said...

Stay the course! This will help you and others who can take strength and give strength through the positive attitude you display. Remember that the Orlandellas love you and Shana deeply. Let us know if we can do anything for the cause.

Keep up the faith for us and all your family.

Uncle Lenny

Vicki said...

Will,
Your positive attitude and determination will be so helpful while you "beat" this. My thoughts and prayers are there for you and your family. thanks to you and your brother for doing this blog, so we all can stay in touch with you and help you through your time of need.
Vicki

Joyl Clance said...

Hey Will-

I know we haven't really had a chance to get to know each other that well (except our run ins in the kitchen), but with being a fan of the Bills, I can see your a fighter. LOL (Giants fan)
I'm thinking of you and sending tons of positive vibes your way! You are in a great city and in good hands. With your attitude, and all of those who love you around you, you will never be alone with all you have on your shoulders right now.
Great idea with the blog! Best wishes.

Joyl

Linda C said...

Will,

I have no doubt that you will be the MVP, the Super Bowl champion and whatever else it takes to beat this. You have a great support team with Coach Shana,your family, and friends and your 12th man, the AHA. We are all here standing with you, cheering you on and ready to support you the best way we can. You are in our thoughts and with us everyday and we wish you the best.

Get Well Soon...I miss our weekly chats. Stay Strong.

Linda

G said...

Hey there Will & Shana (duder)- What a wonderful idea! My family, friends, and co-workers are all praying for you. We are too ;-)
Your positive attitude is inspiring, I know you'll beat this.

Love ya both
G

lynnewolfe said...

Will- I am a friend of your mothers. . She was there for my son when he was ill and I am pulling for you in the same way . I think of you and your family everyday. I have read the power in your words and YOU CAN DO THIS WILL.
Lynne Wolfe

Fogarty said...

Will,

We're thinking of you and praying for you. My uncle's church is also praying for you and all my family here and in Montreal. You will be surely blessed.

We're here for you. If you need anything, just let us know.

We love you. Take care. See you soon.

Love, Ryan, Lynda, and Vanessa

Anonymous said...

I am praying for you every day brother. I'll see you when you get home!

-Chris Shields

Joan and Michelle said...

I can think of no finer man to have such love and support coming his way than Will McCaffrey! Michelle and I knew we were on a major adventure when we took off for Boston to shadow your ambulance. We knew that the doctors at Dana-Farber/Brigham and Women's Hospitals were the absolute best and we couldn't wait to see you there.

It has been wonderful to be able to to support you and Shana in any possible way--you two are a Cinderella Love Story, and have been for quite some time. Everyone is tuning in for the Happily Ever After!

We have added our prayers to the constant stream of prayers from our family and friends. Everyone loves you both! I can now text about 199 words per minute since answering everybody's question: "How is Will? How is Shana?"

It's wonderful being in close proximity to your terrific parents. They are so crazy about you! It has been an honor to merge families, and to share the love we all have for one another. This love has held Michelle and me up while it also does its magic on you!

God bless you, Will (and Shanie). We will be soldiers in your great army and be at your side throughout. You are wonderful, loved and about to have the whole wing of this hospital named after you! Perfect!

Love,
Mumsie and Michelle

Anonymous said...

Will & Shana - I've been thinking about you both a lot this week! Will - I know you are going to beat this! I'm still in shock by the whole thing - it's crazy - but my thoughts and prayers are totally with you everyday. It sounds like you're getting the best specialists, so I know I will see you when you come back here.

Huge hugs to ya!!
~Amy Sung

John and Sandy Wells said...

Will,
Look for the rainbow
When raindrops appear
And you'll surely find
There's one waiting near
For there's something good
In whatever life brings
And rainbows can be
The most wonderful things
Lifting your spirits
And telling you, too.
Before your skies
Will be cloudless and blue

Will, you are in our thoughts and prayers. May God bless you and your family.

Take care,
John, Sandy, John Jr. Wells

karen.wilson said...

Will,

Thank you for keeping your blog up-to-date. I continue to pray for you and your family. You all are such an inspiration to me. I feel priviledged to know you and to have you as a colleague.

Take care,

Karen

somebody said...

酒店經紀人,菲梵酒店經紀,酒店經紀,禮服酒店上班,酒店小姐,便服酒店經紀,酒店打工,酒店寒假打工,酒店經紀,酒店經紀,專業酒店經紀,合法酒店經紀,酒店暑假打工,酒店兼職,便服酒店工作,酒店打工經紀,制服酒店經紀,專業酒店經紀,合法酒店經紀,酒店暑假打工,酒店兼職,便服酒店工作,酒店打工,酒店經紀,制服酒店經紀,酒店經紀