I knew I had to get on and post tonight about my benefit and I really don't know where to begin. To say we were overwhelmed would be an understatement. I had no idea what to expect coming into a day like today and I never could have imagined that it would be like it was. I would like to thank, from the bottom of my heart, my family and friends that organized this benefit on for us. It's obvious that you put a lot of work into this and I love you all so much. It couldn't have been more perfect and Shana and I want you to know how much we appreciate it.
I was told, at one point this week, they were expecting over 300 people to attend and I thought to myself, "no way!". Then, before I left tonight, I was told the count had exceeded 550 people and I don't know what to say except that I have never felt more loved than I did tonight. It was great to see everyone - the people I see all the time, the people I haven't seen in a long time and the people I was meeting for the first time. To everyone who came, everyone who donated and everyone who contributed thank you. Please know that we appreciate everything that everyone has done for us, and we are humbled by it. There were so many people there tonight to support us and you all mean so much to me. I only wish I could have spent more time talking to everyone. I feel like I spoke to 500 people for one minute each and I hope everyone knows that if I could, I would have spent MUCH more time catching up with everyone. I tried to thank everyone personally, and will continue to try to do that, but please know I have so much gratitude in my heart for everything everyone has done.
My positive attitude and approach to this disease is a direct result of the love people continue to give us. The best thing about having such a great network of family and friends is that I don't feel alone or scared, I feel motivated. I don't feel depressed or angry about having cancer, I feel lucky and blessed to have the people I have in my life. This is a battle that couldn't be fought alone.
Here is a quick update on how I am feeling, which is still pretty good. I am starting to feel the effects of chemo a little. The worst part is the fatigue, I am pretty much tired all of the time. I am getting a lot of joint pain (this is an expected side-effect) in my knees, ankles and hands and sometimes it's mild, others it hurts. I wake up in the middle of the night sometimes and it feels as if someone had just taken a baseball bat to my knees...wierd. I have only been sick a few times and the meds they give me for the nausea work pretty well. I have four chemo treatments left until they decide the next steps (I am hoping for surgery!) and I should know by sometime in mid-January.
I thought this was pretty cool: http://www.cnycentral.com/news/video.aspx?id=235236
And this: http://www.9wsyr.com/mediacenter/local.aspx?videoid=250047@video.wixt.com&navCatId=5
Sunday, December 14, 2008
Thursday, December 4, 2008
Home For The Holidays
Hello again! I wanted to post a quick update as I spoke to Dr. Butrynski tonight and got some more information, including the next phase of treatment. He called me at 9PM tonight and would have spoken to me all night if I didn't run out of questions.
They decided that the best course of action is to continue chemotherapy for six more weeks and then evaluate again, but this time at Dana Farber in Boston. So I begin round 2 tomorrow and it will go every Friday until mid-January and then we will go to Boston for a few days so they can do all the scans needed and discuss what's next, whether that's surgery (there are currently two that I need...open heart and the one on my vertebrae), radiation or more chemotherapy.
We were almost positive I would be having surgery next week, and though we thought they only thing that would stop that is bad news, we were wrong. The doctor explained that since the cancer has spread to two spots outside the primary tumor, and the primary tumor poses less of a risk than the cancer itself does, he wants to continue to attack and continue to kill cancer cells with chemo. He was happy with the direction things were going, and so am I. I must admit I really don't want this tumor in my heart anymore, and I feel like taking it out is such a big step towards recovery, so I was disappointed that I wouldn't have surgery next week. That might also be because I was anxious/nervous about it and I had prepared myself mentally for it, kind of like studying for a test, and now I will have to do that all over again. Oh well...I am REALLY happy that I will be able to attend my benefit and will not be recovering from surgery over the holidays, so I guess the timing works out better (as if there is ever a good time).
So, tomorrow morning, I get Taxol treatment number 7. I talked to my doctor about how well I have been handling it and he warned me that the effects of chemo are cumulative and this round might not be as easy. I am fine with that...it's a means to get better so a little fatigue, nausea, baldness and neuropathy are much better than the alternative. I think I noticed myself feeling a little worse towards end of the first round so I see what he is talking about. I don't plan on letting it hold me back though...I want to keep living my life, keep going to work and keep on moving forward.
I hope everyone had a great Thanksgiving. I will continue to update my blog at least once a week with whats going on (it's pretty therapeutic!) and I want to, once again, say THANKS to everyone who is supporting us during this. I couldn't walk this walk alone - not without my wife, my parents, my siblings, my nana, my aunts & uncles, my cousins, my friends, my co-workers and everyone else who keeps the positive vibes and the prayers coming. I am blessed with an amazing family, amazing friends and amazing people in my life...I firmly believe that.
They decided that the best course of action is to continue chemotherapy for six more weeks and then evaluate again, but this time at Dana Farber in Boston. So I begin round 2 tomorrow and it will go every Friday until mid-January and then we will go to Boston for a few days so they can do all the scans needed and discuss what's next, whether that's surgery (there are currently two that I need...open heart and the one on my vertebrae), radiation or more chemotherapy.
We were almost positive I would be having surgery next week, and though we thought they only thing that would stop that is bad news, we were wrong. The doctor explained that since the cancer has spread to two spots outside the primary tumor, and the primary tumor poses less of a risk than the cancer itself does, he wants to continue to attack and continue to kill cancer cells with chemo. He was happy with the direction things were going, and so am I. I must admit I really don't want this tumor in my heart anymore, and I feel like taking it out is such a big step towards recovery, so I was disappointed that I wouldn't have surgery next week. That might also be because I was anxious/nervous about it and I had prepared myself mentally for it, kind of like studying for a test, and now I will have to do that all over again. Oh well...I am REALLY happy that I will be able to attend my benefit and will not be recovering from surgery over the holidays, so I guess the timing works out better (as if there is ever a good time).
So, tomorrow morning, I get Taxol treatment number 7. I talked to my doctor about how well I have been handling it and he warned me that the effects of chemo are cumulative and this round might not be as easy. I am fine with that...it's a means to get better so a little fatigue, nausea, baldness and neuropathy are much better than the alternative. I think I noticed myself feeling a little worse towards end of the first round so I see what he is talking about. I don't plan on letting it hold me back though...I want to keep living my life, keep going to work and keep on moving forward.
I hope everyone had a great Thanksgiving. I will continue to update my blog at least once a week with whats going on (it's pretty therapeutic!) and I want to, once again, say THANKS to everyone who is supporting us during this. I couldn't walk this walk alone - not without my wife, my parents, my siblings, my nana, my aunts & uncles, my cousins, my friends, my co-workers and everyone else who keeps the positive vibes and the prayers coming. I am blessed with an amazing family, amazing friends and amazing people in my life...I firmly believe that.
Tuesday, December 2, 2008
Got GREAT News Today!
After a rough start to the day (which I will explain later) my family and I got the best news we possibly could have gotten today (well...the best realistic news anyway!). After six weeks of chemo the tumor in my heart has shrunk almost 30% (it was around 5 x 7.8cm and now it's 4.1 x 5.4 cm) and the scans didn't pick up any new metastasis in my abdomen, chest or bones. The two existing lesions stayed the same. This means that the Taxol is working and is a very positive sign.
The next steps are still up in the air. I thought for sure the surgery would happen next week, but because the chemo is working so well it's possible that they will give me another round of it first. I will know for sure by Friday, which is when I will start round 2 of chemo if that's what the doctors decide.
The day didn't start off so well as my oncologists office called me and told me after reviewing my chest CT scan from yesterday they were worried I had pulmonary embolisms (blood clots) in my lungs and told me I had to get to Crouse Hospital for an Angiogram. So I went and had that done, and it was a false alarm. At that point, I thought today would be a long day, but it ended up being a pretty good day!!
I believe that all the prayers and positive energy that I am getting from everyone is working very well so THANK YOU! I really, really hope surgery is the next step because I just want this thing out of me, but I will obviously listen to the doctors who have done a damn good job already. Thanks again to everyone for all the support during this. I have no doubt that the love and support of our amazing family, friends and even people we don't know has come a LONG way towards helping me get off to a good start and we really appreciate it.
I am hoping to hear from my doctors tomorrow about what's next and I will be sure to keep everyone updated on what I hear.
The next steps are still up in the air. I thought for sure the surgery would happen next week, but because the chemo is working so well it's possible that they will give me another round of it first. I will know for sure by Friday, which is when I will start round 2 of chemo if that's what the doctors decide.
The day didn't start off so well as my oncologists office called me and told me after reviewing my chest CT scan from yesterday they were worried I had pulmonary embolisms (blood clots) in my lungs and told me I had to get to Crouse Hospital for an Angiogram. So I went and had that done, and it was a false alarm. At that point, I thought today would be a long day, but it ended up being a pretty good day!!
I believe that all the prayers and positive energy that I am getting from everyone is working very well so THANK YOU! I really, really hope surgery is the next step because I just want this thing out of me, but I will obviously listen to the doctors who have done a damn good job already. Thanks again to everyone for all the support during this. I have no doubt that the love and support of our amazing family, friends and even people we don't know has come a LONG way towards helping me get off to a good start and we really appreciate it.
I am hoping to hear from my doctors tomorrow about what's next and I will be sure to keep everyone updated on what I hear.
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