Happy Thanksgiving! Big Day Coming Up (12/2)!

I had my last dose of chemo on Friday and I still feel pretty good. I am still very tired and have a few aches and pains from it, but overall I think the six treatments went well. I have talked to a few others that have had Taxol with similar results (no serious side effects) and if/when I need a more potent chemo I hope I can hold up just as well. I guess I spoke too soon when I said I wasn't going to lose my hair because it’s coming out. I haven’t woke up bald yet, but I am seeing the signs that others have told me I will see before it comes out. I am fine with it…it’s nice to see some physical evidence of the Taxol working! I can basically grab a pinch of hair (it's short) and it all comes out with almost no effort.

So now I get to go back and have all the imaging re-done and then move on to the next step. I spent almost two hours in the MRI machine again today (I swear three more pounds and I don’t fit in that thing) and it wasn’t as bad as the first time, but still not fun. The MRI only looks at the tumor in my heart and I probably won't get the results until 12/2 (unless theres a surprise). The CT and bone scans that I have on 12/1 are the ones I am more anxious about as they will be looking to see if there are any more "spots". I am confident that I will be able to have the open-heart surgery in two weeks and though I am nervous about it, I am excited about getting this thing out of me so we can just focus on stopping the cancer, and not have to worry about the tumor anymore. I am not sure what will happen after the surgery…whether it’s more surgery (removing the impacted vertebrae) or more chemo, or both. I am hoping to know more about the long term plan next week as well. I still feel great about this and where it’s going.

I still feel great and though people expect me to look sick, I still don’t. I actually gained some weight (trying to pack it on before surgery!) and besides the fatigue things are still pretty normal with us (well…as normal as they can be). I was told at my last chemo treatment that I could have a couple beers on Thanksgiving so now I have my nana’s cooking and a couple of beers to look forward to on Thursday! I don’t have a drinking problem or anything, but it’s very difficult to go six weeks without a beer during football season...especially being a Bills and SU fan (you need to drink when they lose...you want to drink when they win!).

I keep getting asked why I don’t update this more often…I am surprised by how many people check it (then call/email me to ask me why I haven’t updated it). I will update again on Tuesday night (12/2) to let everyone know about the results from my tests. I am expecting good news (tumor shrunk…no more metastasis’s…go for surgery).

I also want to thank everyone who is working on, contributing to, traveling to or involved in my benefit in any way. I really have no words that can say how much Shana and I appreciate all that everyone is doing. We can’t believe how much support we have and we are still trying to figure out how to show our appreciation.

I hope everyone has a great Thanksgiving!!

Still Have Hair...???

Hey everyone, sorry for such a huge delay between posts. I am getting ready for my fifth chemo treatment on Friday and looking forward to my follow-up scans that are scheduled for 11/24 (MRI on my heart) and 12/1 (CT Scans/Full Body Scans) and will get my results on 12/2. I am really anxious about getting these results, but I am confident that the chemo is working and I am praying every day I will be on the operating table in early December. I have to be one of the few people in the world right now actually hoping for open-heart surgery in the near future.

I have to admit I am starting to feel like I am sick, something I didn't start feeling until after the fourth treatment. I am fatigued all the time and on top of that I don't sleep well, which probably makes it worse. The nice thing is, I can deal with fatigue…it’s the nausea that I have been worried about and so far it has been VERY minor and only happening for 2-3 days a week, which is tolerable. I think the drugs they give me for that are working very, very well. On top of that I have a lot of joint and muscle pain that were expected and another thing I can live with. I have read about people who have either reacted much worse to this type of chemo OR who are on a much more harsh type of chemo and I am relieved that I have not had to experience that yet. Even if I do, it's a means to get better, so I will take it in stride. Also, I thought I was being all smart by shaving my head and so far I have yet to lose my hair. I keep wondering why, and thinking to myself that if my hair isn't falling out the chemo isn't working. I have been assured by a bunch of people (including one of my doctors!) that there is no relationship between hair loss and successful chemo so I am not that worried about it….but I do wonder about it. Shana thinks it thinning, but I can't tell as it's so short now anyway. It's still funny when I see people that I haven't seen in a long time. They are always surprised that I don't look "sick". I am going to start having fun with that soon (Halloween make-up is all on sale now).

I found a great resource for Sarcoma (The Sarcoma Alliance Discussion Board) and it has allowed me to connect with some others who are around my age and going through something similar. It is helpful for me to chat with people who have gone through this and gives me a good idea of what to expect. I still haven't found anyone with Cardiac Angiosarcoma, and probably won't, but in exchanging emails with others I have found many similarities in the treatments and expectations for others who have been diagnosed with this type of cancer. It's been very helpful to hear from them and learn about what I should expect (not good to leave that to imagination I am learning) and about how others have dealt with it.

I swear I will update this more often and I still appreciate all the great support I have received. I am still doing great and still amped up to fight this. The more I meet and talk to survivors, the more I know that my attitude about this will go a long way towards the outcome. I have no control over this from a physical standpoint…I can leave that to god and the doctors, but I have 100% control over my reaction and attitude and I believe that's carries a lot of weight as well.

Saturday, November 1st Update

Just wanted to give everyone who is checking an update on what's going on, which actually hasn't been much in the last week or so. I had my third chemo treatment yesterday and it went well and I feel pretty good still. Most of the pain I have been having in my chest (that led to discovering this) is gone, which I will take as a good sign, and am hoping is telling me that the tumor is not growing like it was before. The chemo has made me a little sick, but it's not as bad as I expected and I was told that the third chemo is the one that will probably knock my hair out so Shana and I decided to be proactive and we shaved my head (not ALL the way, but close) this morning. She has been asking me to let her cut my hair for like five years now and I finally gave in!

We also got to meet with Dr. Scalzo, my oncologist in Syracuse, yesterday after chemo and he said that it looks like the doctors in Boston have tentatively scheduled my first surgery for the week of December 9th. This would be the open-heart surgery to resect the tumor and remove a piece of my stermum. We were unaware of that before, but we are assuming that they needed to book the surgeons time, even though there is a chance I won't be ready for surgery at that point. I have my follow-up scans scheduled for the last week of November and the first week of December and those will basically tell us if the chemo is working and if we can move forward with the surgery. My three main doctors (Dr. Scalzo, Dr. Butrynksi and Dr. Gorman) have been amazing to us through this ordeal and every time we talk to them we get the feeling they really care. They make you feel like you are their only patient and spend as much time with you as you want answering questions and talking about what's going on.

Our spirits are still high and I really believe that I will beat this. I am taking it one day at a time and for now am just concentrating on letting the chemotherapy do it's job while I live my life. I went back to work on Tuesday, which felt great and once again my employer and co-workers (who are like a second family) have been GREAT through this ordeal. I am going back to Buffalo for the Jets game tomorrow (Go Bills!) and am excited about the month of November as by the end of this month I will be ready to move on to the next step of treatment. Though I wouldn't wish this on anyone, I have to admit that this experience has taught me a lot about what's important in life and where my priorities are.

Shana and I have to thank everyone, once again (and will a million more times) for all the support we have received. I learned about a benefit that is being planned by my family and friends and we are both deeply moved by peoples willingness and want to help and I don't have words that can come close to expressing how thankful we are. I (and my entire extended family) are truly blessed that we have each other and I have said over and over I couldn't walk this walk without them. Also, to my wife, immediate family and in-laws, I really don't know what I would do without you guys and I love you all so much. Thanks!

Benefit for Will

Will and his wife Shana are avid Buffalo Bills fans!

Fundraiser for
Will McCaffrey

The Fireside Inn, Baldwinsville, NY

Sunday, December 14

from 1-6 pm

$15 donation (in advance) / $ 20 donation (at the door)
(Kids 12 and under free)

Music provided by “Elite Entertainment” with a

guest appearance by ‘Elvis’ , Auctions, Raffles
Food, Beverages*, and Activities for the Children
*Alcoholic beverages (available at an additional cost)

Bring your spare change to ‘Fill a Football’ for Will
Don’t forget the Bills are playing the Jets….

Come ready to cheer in your Bills gear!!!

Will, a 29 year-old, was recently diagnosed with a very rare form of heart cancer, cardio angiosarcoma. This type of cancer is diagnosed in only 200 people a year nation wide. Will is currently undergoing treatments at the Dana-Farber Cancer Institute in Boston, The Hematology-Oncology Center in East-Syracuse and at Crouse Hospital in Syracuse. Will is a Business Process Analyst employed by the American Heart Association, and Shana is an 8th grade teacher in the West-Genesee School District. Proceeds of this benefit will help Will and Shana with lost wages, travel, out of town living expenses, and non-covered medical expenses.

Monetary Donations and Advanced Sale
Ticket Orders may be sent to
William McCaffrey Benefit Fund
C/O Kathy Schmitt
P.O. Box 130
Jamesville, NY 13078

To follow Will’s road to recovery visit http://willpower12.blogspot.com

For more information e-mail Lindsay or Stephanie at TheBuffaloWills@gmail.com

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