Monday, November 24, 2008
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!!
Tuesday, November 11, 2008
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 1, 2008
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!
The Fireside Inn, Baldwinsville, NY
(Kids 12 and under free)
Music provided by “Elite Entertainment” with a
Food, Beverages*, and Activities for the Children
*Alcoholic beverages (available at an additional cost)
Don’t forget the Bills are playing the Jets….
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
For more information e-mail Lindsay or Stephanie at TheBuffaloWills@gmail.com