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.
skip to main |
skip to sidebar
visits since Feb 2009
2010 Syracuse Heart Walk
Welcome!
Welcome to my blog! I will be using this blog as a place to document and share with others my experience with a very rare form of heart cancer. My name is Will McCaffrey and on October 12th, 2008, at age 29, I was diagnosed with stage 4 Cardiac Angiosarcoma, a very rare and aggressive type of heart cancer. I had a primary tumor in my right atrium (one of the chambers of my heart) and at diagnosis they found that the cancer spread to one of my T4 vertebrae and my sternum. They have since found other metastasis in my L2 vertebrae and on one of my lower ribs.
Since this cancer is so rare my primary treatment center is MD Anderson in Houston(I live in Syracuse, NY), but I am also receiving treatment from Hematology-Oncology Associates of CNY. Initially I got my treatment at Dana Farber in Boston. Since my treatment is being coordinated between multiple different centers, I can say I am very lucky because I have two EXCELLENT oncologists (Dr. Scalzo in Syracuse, who manages my care locally and Dr. Ravi in Houston who specializes in my specific type of cancer).
I am currently on a chemo regimen consisting of Gemzar and Taxotiere, that I get weekly in Syracuse (started in March 2010). When I was diagnosed I spent about eight months on Taxol, which was very effective in shrinking my primary tumor. When that stopped working I started a nasty regimen called AIM (Adriamycin, Ifosfomide and Mesna) that consisted of a week in the hospital every three weeks (I had six of these treatments from July-November 2009). Once the AIM was done and the tumor stopped shrinking I was given an opportunity to have surgery and on December 22nd, 2009 I had the tumor removed by Dr. Michael Reardon at Methodist Hospital in Houston. The surgery was successful as they removed 100% of the tumor from my heart with clean margins. You can see the surgery here: http://www.youtube.com/watch?v=SgPl-z6V68o.
I love all of the comments that people have been leaving. I read everyone of them and I wish this site gave me the ability to respond, but it doesn't. If you want to email me directly use wmccaffr@gmail.com. One of the positive things that has come out of this has been catching up with all of the great friends I have made over the last 30 years, some that I haven't talked to in a long time. I have really enjoyed that and all the well wishes and prayers keep me going!
Since this cancer is so rare my primary treatment center is MD Anderson in Houston(I live in Syracuse, NY), but I am also receiving treatment from Hematology-Oncology Associates of CNY. Initially I got my treatment at Dana Farber in Boston. Since my treatment is being coordinated between multiple different centers, I can say I am very lucky because I have two EXCELLENT oncologists (Dr. Scalzo in Syracuse, who manages my care locally and Dr. Ravi in Houston who specializes in my specific type of cancer).
I am currently on a chemo regimen consisting of Gemzar and Taxotiere, that I get weekly in Syracuse (started in March 2010). When I was diagnosed I spent about eight months on Taxol, which was very effective in shrinking my primary tumor. When that stopped working I started a nasty regimen called AIM (Adriamycin, Ifosfomide and Mesna) that consisted of a week in the hospital every three weeks (I had six of these treatments from July-November 2009). Once the AIM was done and the tumor stopped shrinking I was given an opportunity to have surgery and on December 22nd, 2009 I had the tumor removed by Dr. Michael Reardon at Methodist Hospital in Houston. The surgery was successful as they removed 100% of the tumor from my heart with clean margins. You can see the surgery here: http://www.youtube.com/watch?v=SgPl-z6V68o.
I love all of the comments that people have been leaving. I read everyone of them and I wish this site gave me the ability to respond, but it doesn't. If you want to email me directly use wmccaffr@gmail.com. One of the positive things that has come out of this has been catching up with all of the great friends I have made over the last 30 years, some that I haven't talked to in a long time. I have really enjoyed that and all the well wishes and prayers keep me going!
Posts
22 comments:
Hi Will, I am so glad you are home. Yes, I am reading and staying up with what is going on with you. I and so many others are praying for you.
http://www.americanrhetoric.com/speeches/jimvalvanoespyaward.htm
"Don't give up, don't ever give up!" - Jimmy V
Glad to hear you are back in the Cuse, Will. Best of luck with the continuing therapy and just remember that all of these wonderful people are here to support you. We look forward to the updates.
With love,
Jim Powers and family
We're still here :)
I just wanted to let you know close friends of ours have added you and Shana to their church prayer list in Syracuse. Also, here in TX, co-workers and friends in bible studies are praying.
We love ya
G
Hey Will,
Glad your home, I check this every day for your updates, look forward to talking to you soon.
Stay Strong, your in our thoughts.
Joe
Will - I am so glad you're home. Everyone here in the office is reading your blog and we look forward to your updates. Stay strong and remember we are all sending our positive thoughts and prayers to you and Shana.
The best way to keep up on your progress is by reading your blog! Otherwise, we would all be calling every day and you'd be repeating your daily news a hundred times over. You and Shana are cradled in my prayers every day. We had a prayer group meeting at church last night and shared your story and your determination. Everyone at church is praying for you as well. Thanks for taking the time to update your blog. We love you both so very much. Good luck tomorrow with round #2. We hope you'll feel so good you want french fries and chicken fingers again! Love you. xooxox Michelle
Hey, Will, I read your blog (as usual), and got a kick out of the part where you say you didn't get very sick during or after the first dose of chemo. I just thought I'd share with the readers the REAL story: Will had his chemo in privacy, with his parents and Shana with him. Michelle and I waited in the lounge, praying for him, also as usual. We tiptoed back when we thought it was over, gently opened the door, and Will said, "I think they made a mistake. I think there was only water in it since I didn't feel any negative effects. I feel great. Hey, can I have some CHICKEN FINGERS AND FRENCH FRIES???"
I do believe in the power of prayer. I have friends who have activated prayer groups for Will in both Florida and Syracuse, NY. I believe our prayers are being heard and that although we don't pray EXACTLY for Will's desire for french fries right after chemo, we pray that the very best will happen to him and for him. I thank God and all of our prayerful friends who have brought glows of love into our lives.
We love you to pieces, Will, and love Shana so much! We will keep those prayers AND french fries coming.
Love, Joan and Michelle
Will, I am so glad that you are home, and I bet the dogs are, too. I have activated the prayer group at my church, and everyone I know is praying for you. You are loved more than you can possibly know. I do not understand why this is happening to you, but I do know that you are going to come through this with flying colors, well and completely cancer free. Our prayers are with you, Shana, and your entire family. As you continue on your road to full recovery, keep up your positive attitude and know that the loving, healing presence of God is always with you.
Gee's Mom (Linda)
We definitely follow the blog to stay updated on your progress. It's so much easier than peppering you with phone calls and questions. This is a stressful enough time for you both. We just want to be able to tell you both how much we love, support, and pray for you during this journey. A positive attitude makes all the difference when dealing with this. So keep thinking happy thoughts and know the Lord is with you always.
Love,
Ajima Joy & Uncle Lenny
Were your ears burning? It's not the chemo - Dawn and I were talking about you. We both send very best wishes. Glad you're home!
Hi will,
It makes me smile to think of you at home with Shana and the pups. We always check for updates and you are forever on our minds.
Love,
Michelle m
Will,
Glad you are home and that things are progressing. We are all thinking of you often, and your ears should be burning. We all miss you, but you are the road to recovery. Keep up your positive attitude, stay the course and do not worry about the little things, all of us will step up to the plate like you are. Use your strength to get well. My thoughts and prayers are with you. Thanks for taking the time to keep us updated. You have a tremendous network of family, friends and co-workers who are supported you in everyway. Thinking of you often
Now, "get it done"
Vicki
Will,
Glad you are home and that things are progressing. We are all thinking of you often, and your ears should be burning. We all miss you, but you are on the road to recovery. Keep up your positive attitude, stay the course and do not worry about the little things, all of us will step up to the plate like you are. Use your strength to get well. My thoughts and prayers are with you. Thanks for taking the time to keep us updated. You have a tremendous network of family, friends and co-workers who are supporting you in everyway. Thinking of you often
Now, "get it done"
Vicki
Will, thinking of you constantly. Friends and family in Florida, Syracuse, Puerto Rico, and throughout many other states have added you to numerous prayer networks and ask about your progress daily. Cissy wanted me to tell you that she's lighting candles for you in church. We love you and are praying for you to be well very soon. Staying positive as you are is the key. Toni Carlos
Will,
Great to hear your back home and things are going well!
-Chris Shields
Hi Will,
We are happy that you are back in Syracuse in the comfort of your own home. We are keeping you (and Shana)in our thoughts and praying that you can beat this horrible disease. Your courage and amazingly positive attitude will surely help you fight it. Sending our love and support your way.
Love,
Aunt Barb and Uncle Bill
Hey Will,
We love this blog. It's so nice to hear your home. We look everyday and think of you all the time. It really is awesome to see how many people are in your life and encouraging you and showing you all their love and support. Not that this is how you want to find out how many people you have touched with your kindness, awesome smile, humor, and good looks, but you truly are blessed with a HUGE support group. With everyone praying all over the world for you. You deserve only the best Will. You already have Shana and we know how incredible she is. Rock on!!!!!
Love Always,
John & Chris, Nate & Maria
It's about time!!! We're all been waiting to hear!
Glad you're home and feeling good!
:)
Keep the updates coming.
hey Will - glad you are home with the doggies. pets are the best therapy. pls keep up the updates!
Liz C
i believe in will power :) love you
<3ur sister
Post a Comment