Every six weeks since my diagnosis I have had follow-up scans to check the status of my disease. I had scans today in Syracuse and for some reason I was more anxious and nervous about it than usual. All my anxieties were put to rest when Dr. Scalzo opened the door and exclaimed "great news" before he even stepped in the room!
The scans I get every six weeks are to ensure that the cancer hasn’t spread, to check the tumor and ensure it isn't growing and to determine whether or not we are still on the right track. Today's scans showed no new lesions or tumors and showed that my tumor has shrunk more since the last set of scans. The current size is 3.9 x 3.4 cm (in October it was 8.4 x 5.2 cm) which means that the chemotherapy is still working to both stop the spread of the cancer and keep the tumor under control.
I am not sure why I was so anxious going into my scans today. I think it's a combination of the fact that I haven't been feeling well lately (chemo sickness, pain, etc), some new pains I have been getting (every strange feeling I get gets my mind wandering) and some new information/research I have received about my kind of cancer (which wasn't very elevating). I came across a study released in June 08 by the Cancer Society and the Mayo Clinic that is a study of every case of malignant primary cardiac tumor seen at the Mayo Clinic since 1975 (which is a whopping 34 cases). Reading it was very informative, but also not very uplifting (I've been aware of the survival rate all along and have never let it get to me, and don't plan to!). One thing that struck me though is the median survival time for cardiac tumors with metastasis (that's me). In this study (and many other's I have come across), it's five months. I will be at the five month mark in two weeks and after getting the good news I got today I am starting to feel comfortable saying that I am winning this battle. I know I have a long way to go, but I feel that today's results were a big milestone for me, especially because my disease hasn’t progressed (in fact it's regressed) in 20 weeks and these results cleared the way for me to begin radiation next week (which is another milestone I am excited about). My doctors rock.
The worst part about this is, to date, is waiting. It's like I am living my life six weeks at a time right now and can't think much further ahead than that. I have six more chemo treatments (I get this Friday off and start again on 3/13) and after that we go back to Boston to find out what's next. It's unsettling to know that I might be having surgery…but I might not. I think I will have it in May...but it might not be until July. It's hard to make plans and look into my future much more because of all the uncertainty around this. I don't know if I should register for school (I am three classes away from my M.S. degree) or if I should book a trip to Vegas this summer (and I have to plan a trip to Yankee Stadium!). I shouldn’t complain though, because if that's the worst part of what I am going through right now I guess you'd say I am doing pretty good.
I will post later this week when I know more about radiation and what's going on with that. To be honest, I haven't done too much research on it but I need to get on that. I go on Wednesday to be "mapped", which is another CT scan (or set of scans) that maps out where they are going to hit me with radiation starting next week. Thanks again to everyone for all you are doing for me. We have so much support and love and it never slows down and I absolutely believe that it's a huge part of where I am right now with this.
Tuesday, March 3, 2009
Saturday, February 14, 2009
Feburary 15th Update
Hope everyone had a nice Valentines day…I know we did (and so did the Orange!). Shana and I have been treating every day (almost) like Valentines Day since my diagnosis, so it really wasn’t a lot different than any other day, but still…we had a nice day.
I received an email this week from a woman named Sandra who found my blog while searching for information on Cardiac Angiosarcoma. As many of you know, I have been trying to find and connect with someone else with this specific cancer since my diagnosis and haven't been able to find anyone (though I have met some amazing and inspiring people with other types of cancer and even some others with other types of Angiosarcoma). Sandra's son, Ruben, was diagnosed with Cardiac Angiosarcoma just after his 16th birthday and he is now in remission at age 18. It's safe to say Ruben is an inspiration to me as he fought and survived Cardiac Angiosarcoma just like I plan on doing. I posted a link to his website under the "Links" section on the right of the blog (you need to register to view his site).
I have been emailing back and forth with Sandra all week and though I find it tragic that such a young man has had to endure what Ruben has, and wish he didn't have to, I have really enjoyed sharing experiences with his mom. It's very therapeutic to talk to, and learn from others who have been through this, especially when you know it’s the exact same thing. She told me that she has also been searching for someone with this diagnosis and in almost three years, I am the first she has been able to find. That's not a surprise to me though and I am very thankful that Sandra found me. I am sure, as long as it's OK with her, I will post more about Ruben as I learn more about what he went through.
On to how I am doing…I know I mentioned in my last post that I may have to skip a treatment because I was sick with bronchitis, but I didn't . My blood counts just made it (they have cutoffs for some of the things they measure) and I was able to get my treatment. I had chemo #16 this past Friday and each week it hits me a little harder and I feel a little sicker, but I still just go about my life telling myself that this is what I need to do to get better…and I am still doing better than most people who get chemo, and I am very thankful for that. I just wish I didn't need 10-12 hours of sleep sometimes to actually function during the day! I am meeting with the Radiologist on Wednesday to discuss the radiation regimen that they want to start and will post about that when I know more. I am kind of looking forward to it because I just feel like radiation will be progress, and get me a little closer to being where I want to be with this. They also tell me the radiation will help with the pain that I am feeling in my ribs and back, which would be nice.
Since it's Valentines day (or was yesterday) I just want to take a second to thank my two valentines…Shana and my mom. I love you both so much and I appreciate everything you do for me. Thank you and Happy Valentines Day!
I received an email this week from a woman named Sandra who found my blog while searching for information on Cardiac Angiosarcoma. As many of you know, I have been trying to find and connect with someone else with this specific cancer since my diagnosis and haven't been able to find anyone (though I have met some amazing and inspiring people with other types of cancer and even some others with other types of Angiosarcoma). Sandra's son, Ruben, was diagnosed with Cardiac Angiosarcoma just after his 16th birthday and he is now in remission at age 18. It's safe to say Ruben is an inspiration to me as he fought and survived Cardiac Angiosarcoma just like I plan on doing. I posted a link to his website under the "Links" section on the right of the blog (you need to register to view his site).
I have been emailing back and forth with Sandra all week and though I find it tragic that such a young man has had to endure what Ruben has, and wish he didn't have to, I have really enjoyed sharing experiences with his mom. It's very therapeutic to talk to, and learn from others who have been through this, especially when you know it’s the exact same thing. She told me that she has also been searching for someone with this diagnosis and in almost three years, I am the first she has been able to find. That's not a surprise to me though and I am very thankful that Sandra found me. I am sure, as long as it's OK with her, I will post more about Ruben as I learn more about what he went through.
On to how I am doing…I know I mentioned in my last post that I may have to skip a treatment because I was sick with bronchitis, but I didn't . My blood counts just made it (they have cutoffs for some of the things they measure) and I was able to get my treatment. I had chemo #16 this past Friday and each week it hits me a little harder and I feel a little sicker, but I still just go about my life telling myself that this is what I need to do to get better…and I am still doing better than most people who get chemo, and I am very thankful for that. I just wish I didn't need 10-12 hours of sleep sometimes to actually function during the day! I am meeting with the Radiologist on Wednesday to discuss the radiation regimen that they want to start and will post about that when I know more. I am kind of looking forward to it because I just feel like radiation will be progress, and get me a little closer to being where I want to be with this. They also tell me the radiation will help with the pain that I am feeling in my ribs and back, which would be nice.
Since it's Valentines day (or was yesterday) I just want to take a second to thank my two valentines…Shana and my mom. I love you both so much and I appreciate everything you do for me. Thank you and Happy Valentines Day!
Thursday, February 5, 2009
February 5th Update
I just wanted to say hello and give everyone who’s still checking an update on what’s been going on, which isn’t much really! I have been sick the last few days with bronchitis, which has been rough, but I think it’s starting to get better. I am hoping it won’t stop me from getting chemo #15 tomorrow, but I will see when I get there.
I have been feeling the effects of the chemo more often lately, but it’s still overall pretty mild compared to my expectations and what I have heard from others. I am having some nausea and joint pains, which are well controlled with medication and like always just feel fatigued mostly all the time. There is still a lot of pain and stuff going on in my chest/abdomen, but I am getting used to that, in fact it almost feels strange when I don’t get it. It’s hard to believe it’s been 16 weeks since my diagnosis – it feels like it’s been 16 months and this has certainly become a way of life for us.
A couple of weeks ago we met with a radiologist and they are considering doing some radiation therapy during my next break from chemo (my one week break that would occur at the end of this month). The radiologist was waiting for some images/scans to arrive from my last round in Boston before making a recommendation – I am hoping to find out about that soon. It sounds like they are unsure whether or not it’s needed at this point. Since we found out about how major the surgery on my vertebrae would be, and they’d like to avoid it if possible, radiation becomes the only option for treating that area. The amount of radiation they can use on that area (like any) is limited, so they are unsure if they want to treat it now or wait until (if ever) that spot starts growing/spreading. They would use a radiation technology called cyberknife on that spot. It’s robotic and seems pretty cool.
At the end of this month I will have another set of CT scans done (during my week off of chemo) just to make sure nothing has changed before having six more treatments taking me to the end of April.
I have been feeling the effects of the chemo more often lately, but it’s still overall pretty mild compared to my expectations and what I have heard from others. I am having some nausea and joint pains, which are well controlled with medication and like always just feel fatigued mostly all the time. There is still a lot of pain and stuff going on in my chest/abdomen, but I am getting used to that, in fact it almost feels strange when I don’t get it. It’s hard to believe it’s been 16 weeks since my diagnosis – it feels like it’s been 16 months and this has certainly become a way of life for us.
A couple of weeks ago we met with a radiologist and they are considering doing some radiation therapy during my next break from chemo (my one week break that would occur at the end of this month). The radiologist was waiting for some images/scans to arrive from my last round in Boston before making a recommendation – I am hoping to find out about that soon. It sounds like they are unsure whether or not it’s needed at this point. Since we found out about how major the surgery on my vertebrae would be, and they’d like to avoid it if possible, radiation becomes the only option for treating that area. The amount of radiation they can use on that area (like any) is limited, so they are unsure if they want to treat it now or wait until (if ever) that spot starts growing/spreading. They would use a radiation technology called cyberknife on that spot. It’s robotic and seems pretty cool.
At the end of this month I will have another set of CT scans done (during my week off of chemo) just to make sure nothing has changed before having six more treatments taking me to the end of April.
Friday, January 16, 2009
Moving Forward
Just got back from a long two days in Boston and overall I think the news was pretty good. After all the scans and injections I am probably glowing in the dark a little bit. The tumor has shrunk again, but not nearly as much as it did after the first round of chemo (in December it was 4.1 x 5.4 cm and it is currently 3.1 x 5.3 cm). As long as it keeps shrinking, regardless of by how much, the chemo is doing it’s job and that’s something for me to be excited about. This MRI also confirmed that the tumor is no longer compressing my SVC artery.
The lesions on my sternum and T4 vertebrae are still there and we are pretty sure there is another spot on my lower left rib. According to my oncologist this spot has “lit” up on scans in the past and the MRI on Wednesday confirmed a lesion on that rib. I have had a significant amount of pain in that area (since September) so it wasnt a surprise to see this spot show up on a scan. To be honest, I am relieved that this pain/spot is another bone metastasis and not something else (like an organ).
This was pretty much the first time in this ordeal that we have been faced with a choice, as my doctor gave us two options…continue on chemotherapy for another 12 treatments (over 13 weeks) or have surgery to remove the tumor. His recommendation is to go with more chemotherapy and since all of my doctors have been kicking ass to date the decision to go with his recommendation didn’t require a second thought. So, for the second time in two months, surgery is postponed, this time until at least April. Though I was, and still am, looking forward to getting it done, I am pretty happy with the plan and where this is going.
For anyone who is interested in the reasoning behind choosing chemotherapy over surgery, Dr. Butrynksi explained it pretty well. The surgery is absolutely necessary and will happen eventually, but this is considered localized treatment (only focusing on one instance of the cancer). Since the surgery is such a major surgery, I would need to be off chemo for at least 10 days prior (to get my strength back) and at least 4 weeks after (to allow for recovery). Since the cancer is stage 4 and angiosarcoma spreads quickly, this is taking a huge risk that it could spread to other parts of my body during this time. On the other hand, chemo is considered a systemic (non-localized) treatment and based on the results we have had so far we know its killing cancer cells, and the more cancer cells we kill, the less likely it is to spread to another part of my body. In other words, fixing my heart really doesn't really matter if the cancer keeps spreading. From my research, I am lucky to have this as an option as many of the people that have this cancer need immediate surgery due to the size of the tumor at diagnosis (this is the reason the average and median survival rates are so low). So doing chemo now and surgery later seems to make perfect sense to me.
We will also be meeting soon with a radiation oncologist to discuss treating the bone spots with radiation, which can be done concurrently with chemo. We specifically discussed doing this to the vertebrae and it would require daily radiation treatments for up to six weeks. Depending on the side-effects and long term effects of this, I am going to push for this soon.
Sorry about such a long post! Though I didn’t get what I wanted (surgery), I am very excited about where this is going. I am not looking forward to another 12 chemo treatments (I have already had 12) as the side-effects have gotten progressively worse, but 12 more chemo treatments will be another huge step forward towards the end goal, so I will gladly take it (I even asked him to increase the dose…but there is no clinical evidence that a higher dose would be more effective).
Thanks again to my amazing network of family and friends who have supported us in so many different ways. You really are making this easy on me. I will update again soon.
The lesions on my sternum and T4 vertebrae are still there and we are pretty sure there is another spot on my lower left rib. According to my oncologist this spot has “lit” up on scans in the past and the MRI on Wednesday confirmed a lesion on that rib. I have had a significant amount of pain in that area (since September) so it wasnt a surprise to see this spot show up on a scan. To be honest, I am relieved that this pain/spot is another bone metastasis and not something else (like an organ).
This was pretty much the first time in this ordeal that we have been faced with a choice, as my doctor gave us two options…continue on chemotherapy for another 12 treatments (over 13 weeks) or have surgery to remove the tumor. His recommendation is to go with more chemotherapy and since all of my doctors have been kicking ass to date the decision to go with his recommendation didn’t require a second thought. So, for the second time in two months, surgery is postponed, this time until at least April. Though I was, and still am, looking forward to getting it done, I am pretty happy with the plan and where this is going.
For anyone who is interested in the reasoning behind choosing chemotherapy over surgery, Dr. Butrynksi explained it pretty well. The surgery is absolutely necessary and will happen eventually, but this is considered localized treatment (only focusing on one instance of the cancer). Since the surgery is such a major surgery, I would need to be off chemo for at least 10 days prior (to get my strength back) and at least 4 weeks after (to allow for recovery). Since the cancer is stage 4 and angiosarcoma spreads quickly, this is taking a huge risk that it could spread to other parts of my body during this time. On the other hand, chemo is considered a systemic (non-localized) treatment and based on the results we have had so far we know its killing cancer cells, and the more cancer cells we kill, the less likely it is to spread to another part of my body. In other words, fixing my heart really doesn't really matter if the cancer keeps spreading. From my research, I am lucky to have this as an option as many of the people that have this cancer need immediate surgery due to the size of the tumor at diagnosis (this is the reason the average and median survival rates are so low). So doing chemo now and surgery later seems to make perfect sense to me.
We will also be meeting soon with a radiation oncologist to discuss treating the bone spots with radiation, which can be done concurrently with chemo. We specifically discussed doing this to the vertebrae and it would require daily radiation treatments for up to six weeks. Depending on the side-effects and long term effects of this, I am going to push for this soon.
Sorry about such a long post! Though I didn’t get what I wanted (surgery), I am very excited about where this is going. I am not looking forward to another 12 chemo treatments (I have already had 12) as the side-effects have gotten progressively worse, but 12 more chemo treatments will be another huge step forward towards the end goal, so I will gladly take it (I even asked him to increase the dose…but there is no clinical evidence that a higher dose would be more effective).
Thanks again to my amazing network of family and friends who have supported us in so many different ways. You really are making this easy on me. I will update again soon.
Friday, January 2, 2009
Happy New Year!
I hope everyone had a great and relaxing Christmas and New Year's. It was nice to have some time off to relax and get caught up on stuff at home (like playing Xbox). 2008 has been a difficult year for us and I am happy to move on to a new year.
It's been a while since I have updated and to be honest, there isn't much to update. I have my eleventh chemo treatment tomorrow and that's still going OK. I have felt sick more the last couple of weeks than I did during the first round, but the medication still works pretty good to control the nausea and pain (joint pain, which can get really bad) so I am not complaining. I am still tired pretty much all of the time.
I have two chemo treatments left (tomorrow and 1/9) and we learned a few days ago that we would be going back to Boston on 1/14 for testing and to meet with the doctors. I will be having a head MRI, a cardiac MRI and a full body PET/CT scan done. The head MRI is probably to take a closer look at my orbit. In October and December they did bone scans and both times there was a "hot spot" on my left orbit. The doctors said it could be sinus related but they would eventually want to look into it more. The cardiac MRI is to look at the tumor again and the full body PET/CT scan is to look for both changes in the current "spots" as well as anything new. We will be meeting with Dr. Shakar (the surgeon) and Dr. Butrynski (the oncologist) and will find out whether or not I will be having surgery this month.
I am really hoping for surgery ASAP. The pains and funny feelings I get in my chest make me think about the tumor and how badly I want it taken out. On top of that, I want to move on to the next step of this. Not knowing what's next drives me crazy, especially not knowing when. My gut tells me it's going to happen this month and we will know for sure in the next couple of weeks. I still have a very positive attitude about this and I know that I will get through it, it's just a matter of time and treatment.
It's been a while since I have updated and to be honest, there isn't much to update. I have my eleventh chemo treatment tomorrow and that's still going OK. I have felt sick more the last couple of weeks than I did during the first round, but the medication still works pretty good to control the nausea and pain (joint pain, which can get really bad) so I am not complaining. I am still tired pretty much all of the time.
I have two chemo treatments left (tomorrow and 1/9) and we learned a few days ago that we would be going back to Boston on 1/14 for testing and to meet with the doctors. I will be having a head MRI, a cardiac MRI and a full body PET/CT scan done. The head MRI is probably to take a closer look at my orbit. In October and December they did bone scans and both times there was a "hot spot" on my left orbit. The doctors said it could be sinus related but they would eventually want to look into it more. The cardiac MRI is to look at the tumor again and the full body PET/CT scan is to look for both changes in the current "spots" as well as anything new. We will be meeting with Dr. Shakar (the surgeon) and Dr. Butrynski (the oncologist) and will find out whether or not I will be having surgery this month.
I am really hoping for surgery ASAP. The pains and funny feelings I get in my chest make me think about the tumor and how badly I want it taken out. On top of that, I want to move on to the next step of this. Not knowing what's next drives me crazy, especially not knowing when. My gut tells me it's going to happen this month and we will know for sure in the next couple of weeks. I still have a very positive attitude about this and I know that I will get through it, it's just a matter of time and treatment.
Sunday, December 14, 2008
Thank You Everyone
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
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
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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