Two Down...Four To Go!

I had my second chemo treatment yesterday and it was a different experience than the first as it was at a treatment center here in Syracuse and not in my hospital room like in Boston. It is like this huge open lounge full of people getting treatment. Everyone seems to be really upbeat and friendly. They administered other meds first via IV (steroids, allergy meds, stomach meds) and the allergy meds literally knocked me out so I got to sleep during the entire treatment, and from the way people were staring at me when I woke up, I think I snored pretty loudly.

I feel OK now and don't expect to get sick until tomorrow/Monday like last time, and am keeping my fingers crossed that it will still be mild like it was before. They are not sure what to tell me to expect because the drug I am getting (Taxol) is one that is normally administered every three weeks instead of weekly. On Tuesday afternoon I have to go in for a walk-in surgery to get a port installed in my chest, where they can take my blood and administer the medicine without having to do an IV each time. I am happy about that as the IV nurses don't seem to have an easy time finding good veins in my arm for the treatment. I am also trying to find instructions on the Internet how to use the port they install to drink my coffee intravenously...that will save me some time and will get the caffeine I need to function in my blood much more efficiently than drinking it! Just kidding...

When talking to the chemo nurse and doing some research on the drug I am taking I found it interesting to learn how carefully they need to handle it. One of the reasons they are doing the port is for my safety, as if the IV were to leak and the Taxol were to get on my skin it would cause irreversible tissue damage. They have to wear special gloves when handling it as well. I guess that's good in the sense that it sounds like it's good at it's job (killing cells) but it's kind of scary that they are so worried about getting it on my skin while they pump it into my veins!

I just want everyone to know I still feel great and if you saw me you still wouldn't know there was anything wrong with me. My attitude about this hasn't changed and though I am anxious about the next 4-5 weeks I am still amped up to fight this and can't wait for the next round of tests. I joked with my doctor this week that I am one of the few people who is actually hoping for open-heart surgery, as that will mean the plan is working. I am going back to work on Tuesday and am really excited about that, as one of my doctors told me last week that I wouldn't be going back to work for awhile (of course that was before they decided to delay the surgeries I need to give me chemo), so I have to look at that as a small victory. Thanks again everyone for all the well-wishes...I can't believe how much support I have received. It's been unbelievable and I am literally moved by the support I have received from my family and friends, from my employer (The American Heart Association), from Crouse Hospital and from everyone else who has been involved in helping us get through this.

Kathy (Shaun's mom)

Will, I'm so glad to hear that your home. And yes, it is so awesome to sleep in your own bed. There's nothing like it. I know from experience. Your dogs, I'm sure are excited that their dad is home. My friends and I have an internet prayer list. Everyone on the list has prayers being said everyday for their road to recovery. I just read your blog and go in and update every few days. Keeping your spirits high is a great medicine to beat this. Brian's girlfriend's grandpa had stage 4 Gioblastoma Multiform. A very rapid growing form of brain cancer. They told him he had 14 months to spend with his family and friends. They did chemo, surgery and more chemo. He is now 1 yr later cancer free. I know that with your determination, all your support from family and friends and prayers that you'll beat this. Stay positive and know that millions of people are praying for you and Shana every day.

Kathy

Hello!

Just wanted to see if people were still checking here and let everyone know what's going on. I am home, finally, and it feels good to sleep in my own bed and spend time with my dogs. I have felt a little sick the last few days, and it's probably some combination of the medicine and nerves.

I will start my chemo here in Syracuse on Friday and have set up all of the appointments. All of my follow-up tests are scheduled for December 2nd in Syracuse and then the doctors in Boston will decide the next steps. I am hoping that I don't get too sick from the treatment and I can't wait to climb back into that MRI machine so they can tell me that the tumor has shrunk, the cancer hasn't spread and it's time for surgery.

I continue to get so much support from friends and family that I just don't believe it. I am so lucky to have the people around me that I do and I know I couldn't do this without everybody who has been there for me. I am still blown away by the number of people reading and posting to this blog (keep it up!) and it has been a interesting experience for me. I don't feel like I can say this enough...to all our family, friends and co-workers, thank you so much for all of this support. Everytime I come close to getting down about this someone else reaches in to pick me back up and I can't tell you how much I appreciate it.

I will update sometime this weekend with how the 2nd round of chemo went.

We're still here

We're still here reading your updates - it's much appreciated, keep it up :)

Love ya both

G

Welcome Home!?

Will and Shana, I am hoping to hear that you have made it home safely. I have been thinking about you all the time and praying for you. Whatever you need, let me know. See you soon. Susan

Coming Home Tomorrow!

I am excited to let you know that I am being discharged tomorrow as the doctors feel confident that my heart is stable and think it's best that I am back home (and I agree!). I feel a little sick today (mostly tired with an upset stomach) and I guess that was to be expected...but I wasn't to sick to watch the Bills beat the Chargers, which was awesome.

So here is the plan. I won't know much, other than how I feel, until the end of November or early December. I will be getting the chemo treatments weekly for six weeks and then the doctors will take all the pictures again (I am going to need to be sedated if I am to spend another 1 hour, 40 minutes in an MRI machine) and evaluate how the chemo is working. If the chemo is working I will probably come back here in early December for open heart surgery, where they will remove a piece of my sternum and the tumor in my heart (as well as rebuild my right atrium). Soon after I will need another surgery to resect my vertebrae and then will likely need to undergo more chemo to ensure that the cancer isn't still spreading. There are obviously other scenarios, but I am not considering any of them because I still believe I will beat this...so this is the only option at this point!

I will continue to update this if people continue to read it! Not sure what news I will have to share (other than how I am feeling, but no actual medical news) but I guess I have some perspective to share, and though it's hard putting my feelings out there, I kind of want to.

I want to thank the people again who have given me the strentgh I need to make it through these eight hectic days. All of the people who have come here and commented(EVERYONE!!!) have helped. All the calls, texts and emails have helped...I mean it. I also have to thank my wife Shana, who hasn't left my side in 8 days. We have had spent some great time together during this time (and some had some difficult time as well). My mom, dad, brother and sister have held me up through all of this and I love them so much and Shana's entire family has been amazing. Thank you for being here for both of us...I can't tell you guys what it means.

The Buffalo Bills r lookin good and so are u WILL

Thank you so much for letting us know all that has happened to you this last week. One of the best things that can come out of something like this is you get to see how much people care for you. For every phone call or text you and Shana have received there are ten times that many people wanting to know what you said and how you are.

I was thinking all last week about how much fun your birthday party was last summer. Every time I open up this one cupboard one of your party decorations falls out. It's just so cool all the stuff that Shana put together. Shana, when you get a chance could you post a picture of Will with the JILLS on the site!
Judy

My True Hero

First, I want my husband to know that he is my hero. I love him eight knock it down. His positive attitude makes me realize that I need to love every minute that I have with him and everyone who is in our lives. It is amazing what Will has done fore me. I am who I am today because of Will.

I would like to thank each and every person who has reached out to Will. It really shows how much Will has impacted so many lives. I have always known that he is a great person, but it is nice to see that other people see what I see in him. I can't tell you how many times the movie It's a Wonderful Life has come into my mind as we have gone through this challenge in our lives. I keep on thinking that God will never give you anything that you can't handle. There is a reason why we have this challenge in our lives, but our attitude is firm; we will BEAT this!

We can't wait to get home and be around the rest of the people that we love the most.

Finally, I just want to acknowledge the staff and doctors who have taken care of Will. We owe a lot to them. We have had first rate care all the way from Crouse to Dana Farber Hospital. It is nice to surrounded by the best when you are so far away from home. The teacher gives them a grade of A +++++++++++++++++++++++++++++++++.

We will see you soon! God Bless everyone!
Go Sox!

My Dear Friends,

Shana & Will - I finally figured out how to use this "blog" - yeah!!! I wanted to let you I am so proud of the both of you. The love, strength, courage & support you have for each other will help you beat this! I know you can do it, you are a very strong team. And believe me I am rooting for "Team McCaffrey". I love you guys and please know I am here for you. Talk with you soon! Love ya, Danielle :O)

Chemotherapy and More THANKS!

Thanks again everyone for all the well wishes that keep on coming. It's amazing how many people have seen this in the last couple days and every message I get (here and other places) has helped me keep positive and as each day passes I grow more confident that I will beat this. It's great hearing from everyone...it's really great.

I had my first dose of chemo today and to be honest it wasn't a big deal at all. I was expecting to be sick and miserable but it just never happened. That is encouraging for me and I am looking forward to my next dose and the doses after that to try to get to the next stage of this game.

The staff here at Brigham Women's Hospital have been amazing. The nurses, chemo nurses, doctors, surgeons and techs have been so accommodating to us, and so friendly and just seem like they really want to help (even though we are from NY and mostly Bills, Giants and Yankee fans). I spoke to one of the doctors on my team today and he told me that the team was "agonizing" over how to treat me for this and I was surprised to hear such an emotional word used by a doctor. It felt good to know that they were putting in so much effort behind the scenes to fix this. My primary doctor, (Dr. James Butrynski, MD) specializes in Sarcoma and he has been amazing, spending at least an hour a day with us, answering questions and just talking us through this. He told me today that he is thinking he would discharge me (back to Syracuse) on Monday or Tuesday and I could get my treatment there while under his care. I am excited about that! There is still the question of my heart, which is acting very irregular (not a surprise with an 8cm x 4cm tumor growing inside it) and I will likely need to be looked at frequently and take it easy for a little while. I also talked to him about going back to work, which I want to do very badly (to get back to normal) and he told me he would be open to discussing it with me and my doctors from Syracuse.

There are a lot of things that I have to do when I get home. Most of you know my grandmother passed away on Sunday (the same day I was admitted to the hospital) and I had to miss the calling hours and the funeral to deal with this issue. I feel as if I have no closure and this is a woman who has been a huge part of my life, so my goal when I get back is to find that closure. I feel her and my Pa (grandfather, who we also lost this year) with me every step of the way and I know they are helping me from the other side!

I am very excited about the Bills game tomorrow and anyone who knows me knows that I live and die with the Bills and tomorrow I will miss attending my first home game since 2002, which is kind of depressing. I have always joked that it would take a hospital visit for me to miss a game and now when I say that I am not joking. The good news is that the game is on TV here in Boston so I will get to watch it as the Bills beat the Chargers and move to 5-1.

Talk to everyone soon,

Will.

Friday Update

I met with my doctors today and got the first idea of what to expect and what they were thinking. The cardiac surgeon was POSITIVE he could remove the tumor and rebuild my right atrium if it came to that and that's really positive news because we were worried that this wouldn't be a possibility. The problem is that since the sarcoma has spread outside of my heart and is in at least two other places this must be treated systematically with chemotherapy before any other options can be considered. The success rate of this treatment is 40-50% and I am happy with those odds. So basically I start treatment tomorrow (Saturday) and unless there are any incidents it will continue for six weeks and then I will be re-evaluated and the next course of action will be decided.

The hope is that the chemo stops the progression and even kills most of the sarcoma cells. If that works as planned then the doctors will decide the next step, which could be surgery or radiation (or both). If the chemo doesn't stop the progression then they will re-evaluate. I feel good right now and when people see me for the first time I get the impression they are surprised because they were expecting a sick person, and right now I look no different than I did 3 months ago. It was somewhat amusing today during my 3-D sonogram that people from that department kept coming in to see the "thing" in my heart. They keep telling me that they have never seen anything like it...I guess if that means more doctors looking at it, I will take it.

I don't want to sound cheesy but I can't believe all the support I have been getting. My phone won't stop ringing, my annoying text message sound wont stop sounding and the phones of the people here with me (Shana, Mom, Dad, Matt, Joan and Michelle) wont stop ringing and to be honest it makes me feel pretty good - my family, friends, co-workers and acquaintances have not let me get down about this and that's important. I had some visitors that live around here today and it was nice to see some familiar faces and I love reading the comments on the blog (I can't believe how quickly this thing spread!). To everyone who has called, texted, emailed, commented here and visited thank you so much...it means a lot to me and I am 100% sure that all this support is a huge part of how positive I feel about this.

I talked to a lot of people today that I haven't talked to in a long time and it's amazing to me that no matter what changes in our lives that cause us to lose touch with people we love and consider friends, you will always love those people and consider them your friends. It sucks that it's under these circumstances that I am reconnecting with people I haven't talked to in a long time, but at least we are reconnecting and it's been very uplifting.

Thanks again for all the comments...every single one of them put a smile on my face and I am actually looking forward to starting my treatment tomorrow. I will be sure to let everyone know how it goes.

Posting Comments

For the blogging newbies out there, here is a quick set of how-to -comment instructions. Under the blog you want to comment to, click on the word "comments". When the comments section opens, on the right side of the page is a text box with "Leave Your Comment" above it. Leave your comment, then under the text box, in the section "Choose An Identity", use one of the following:

- select "Google/Blogger" if you have a google account, and enter your info

- select "Name/URL" if you dont have a google account. Enter your name in the "Name" text box, and leave the URL text box empty

- select "Anonymous" if desired

Thanks

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.

Pics

I decided to add some pics of Will to spice up the Blog. There are captions below most of the pictures, even though they are hard to read (PLEASE LOOK FOR THEM...HINT: HIGHLIGHT THE COMMENT UNDER THE PICS TO READ THEM MORE EASILY)! Sorry, I couldnt change the color.

To Our Family and Friends...

All, I want to start by saying "Thank You" SOOOO MUCH for everything you have done the last couple days. Everyone has been so strong and supportive and I know it has helped Will tremendously! He is strong and ready to defeat this, and while it is going to be a long road, we are going to get through it!

The intent of this Blogger is to update you all on what is happening here, and so Will can stay connected with all of you. Keep coming back, looking for updates, post responses / comments, and send your love!

Again, Thank You all for everything...we love you!