Angel in Heaven

It is so sad for me to type this message, but today Will after eighteen months of fighting cardiac angio sarcoma was risen up to be with his God. All the way to the bitter end, Will fought this illness with dignity and pride. If you know Will, you know that Will was not afraid of dying, but disappointing his loved ones. I can surely say that this man NEVER disappointed anyone. He will be missed by so many! Will's blog will always be available, but this will be the last entry. Thank you to everyone who have traveled this journey with him. I know how much this site meant to him, and I know how much your comments meant to him. May he rest in peace!

No more chemo, no more surgeries, no more pain Baby. I love you Will with every inch of my heart, mind, body, and soul. You will never be forgotten because you not only touched, but impacted so many lives. I am a better person today because of you, and for that I am eternally grateful.

P.S. In the sidebar to the right, there is a goal that Will wanted to make this year, and that was to raise $1500 for the American Heart Walk... I know that he is not here anymore, but I would like to continue to support him and try to raise as much money as I can. Please if you can donate money towards Will's AHA Heart Walk goal, it would greatly be appreciated. I know that Will has reached his goal of $1500. Thank you to everyone who has donated. I would love to see him reach the $10, 000 mark. God Bless!

New Chemo & Updates!

Wow...it’s been nearly two months since my last update here and I guess I have a lot to update people on! My excuse for not updating is that from the end of January until this past Friday (3/5) I’ve had six weeks of “normal” life that I haven’t had in a long time. After 14 months of chemotherapy and then open-heart surgery, I finally got a short-lived taste of what life was like before cancer. I went back to work on 1/25, less than five weeks after surgery (which I was proud of!) and felt pretty good, especially because I got a nice long break from chemo, which I desperately needed. Of course, I knew it wouldn’t last forever.

We went back to Houston in mid-February and I had scans and I have to admit that I’ve never been more anxious about scans than I was about these. The big question going into surgery was what would happen when they took me off chemo. Knowing how aggressive that this cancer is supposed to be made my doctors pretty nervous and going through such a major surgery without my security blanket (chemo) left me pretty vulnerable. We got great news on the day of my scans - all the things I worried about (lungs, liver, kidneys, etc) were clear and though there was some uptake in my sternum (uptake usually indicates active cancer) the doctors couldn’t say for sure that it wasn’t just a result of post-operative changes. So the scans were good and ultimately i’m convinced that surgery was the right decision. I sleep much better at night knowing there’s no longer a malignant tumor in my heart.

After talking about the surgery and all the things that happened between November and February, Dr. Ravi explained, as he and so many other doctors have explained many times before, that though the surgery was a success (clean margins, good recovery, etc) we’re still dealing with a multi-focal, metastatic disease and there is still a lot of work to do. He said that the best part of the surgery is that being able to examine the tumor gave us a very important piece of data that we didn’t have before. The pathology of the tumor told us that it was 90% necrotic (dead). So all the chemotherapy that I’ve endured up until the surgery was enough to kill 90% of the cancer cells in my primary tumor. Though 90% is high, it still means that 10% of those cells survived. We’ve been told since day one that since this disease is advanced stage (since we know it’s spread to my sternum, vertebrae and ribs) that it’s also likely that its spread to other places that are too small to show on scans yet. The worry, then, is that 10% of those cells are still alive, and he presented me with four options of what to do next. They are:

• Chemotherapy: continue to attack/kill the cancer cells that are left with more systemic treatment. Since I’ve had so much chemo there are risks involved, including long term damage to my liver and kidneys, or worse case scenario, leukemia (blood cancer) that can come as a result of too much chemotherapy (this is more of a long term risk). Since I've handled it so well, I'm not too worried yet about the long term effects.

• Targeted Therapy: (Sunitinib) this is a type of treatment that stops your body from growing blood vessels. It’s currently being used, successfully, to treat other types of cancer and is just starting to be used for Sarcoma. My reservation about this treatment is that it doesn’t kill cancer - it only stops it from growing. On top of that, some of my own research has indicated that this family of drugs is still being tested for use with Sarcoma (with positive results) but might not be covered by my insurance and is VERY expensive. This drug/concept is one that could some day be very effective in treating many different types of cancers.

• Combination of Chemotherapy and Targeted Therapy: this would use chemo and the drugs described above together and it’s very dangerous. I’d have to move to Houston to get this treatment and after talking about the risks with Dr. Ravi I don’t think I’m willing to take those risks at this point. Maybe in the future, but not now.

• Do nothing/wait and see: this option scares me the most. He said if I wanted a break from treatment we could take a “wait and see” approach and stop treatment. Since I decided, from day one, to be as aggressive as my doctors were willing to be, I decided immediately that this wasn’t an option for me (and Dr. Ravi and Dr. Scalzo agreed).

This is where it gets difficult. Dr. Ravi talked with us about each of the options, their risks, their benefits and the fact that there is no data to support that one is better than the other. One one hand, this is the best position for me to be in; if my cancer was growing actively they’d know what to do, but I don’t want that (obviously). On the other hand, I have to make a choice based almost purely on instinct. After talking to my family, Dr. Ravi and Dr. Scalzo I decided that I was going to stay aggressive and opt for more chemotherapy so on this past Friday (3/5) I started a new regimen that is a combination of Gemzar and Taxotiere. I don’t have to be hospitalized for this treatment and the schedule is pretty easy. It’s a three week cycle where I get Gemzar on day one, Gemzar and Taxotiere on day 8 and then get a week off (so I start a new cycle every 22 days). I will go back to Houston in April to be scanned again and decide whether or not this chemo is working. The first treatment wasn’t that bad - I did get a little sick after but compared to my last regimen (AIM) this chemo should be a walk in the park. The most important thing to me is that it will keep on killing cancer cells, which is what makes this option the most appealing.

I hope I’m not sounding pessimistic in this post. The biggest challenge for me, since surgery, is that I’m not sure what my goal is now. Since October of 2008 every decision I made was made with surgery as the end goal and now that it’s done, I don’t know what’s next. We asked Dr. Ravi at what point we might start using the word “remission” and he didn’t really have an answer for us. With this type of cancer, it’s complicated, and since I’m still being treated (with chemo) I don’t think I can use that word for a while. I am happy, though. As I keep saying, barring a miracle, everything that's happened since my diagnosis is exactly what we've hoped for.

I’ve been feeling great though - it’s been a long time since I’ve felt this good. The 12 weeks off from chemo really allowed my body some much needed time to recover. My guess is the next few months will be pretty easy compared to the AIM. Thanks to all my friends for the messages and emails - and I just want to remind people that I can’t respond to the comments in this blog (there are a few I’d like to!) so email me (my email is over on the side bar) so I can get in touch back! I will update again after my next treatment (once I know how the Taxotiere is). Thanks everyone!

Surgery Video

When I was laying on the operating table (just before they put me to sleep) the anesthesiologist asked me if it was OK if he took pictures and I told him "absolutely, as long as I get copies of them". I am still trying to get them but when I asked my surgeon he said he could give me a copy of the video he made (that he will use for educational purposes). It's pretty much a "highlight reel" and is about 2.5 minutes long.

Here is what you see:

• My heart beating before they do anything
• Them hooking me up to the cardiac bypass machine that does the work of your heart and lungs while they repair the heart (I believe I was on this machine for about 35 minutes)
• Dr. Reardon cutting out the tumor & some of the tissue around it (the tumor is the white thing)
• Dr. Reardon sewing the cardiac patch in place
• My heart beating after he's done

I uploaded the video to YouTube and figured I might as well post it here. I get a very strange feeling when I watch this video - not many people get to look at their own heart beating...it's pretty cool! For those that don't like blood and guts I wouldn't look. Check it out here.

Recovery Going Great!

Well I am two and a half weeks from surgery and things are going pretty well. We had a follow-up appointment with my surgeon yesterday and they were pretty happy with how well things are going. I am so happy we came here for this - Dr. Reardon and his staff have been great to us and I am lucky to have him as my surgeon as there is nobody with more experience than him when it comes to removing cardiac tumors (I think I was his 30th resection).

The pain has abated significantly and the incision is healing (though it’s still a little sore). Right now the worst part is the limited mobility (I threw a toy for my dog yesterday and it felt like someone stabbed me in the chest) and discomfort sleeping but it seems to get better every day. I am hoping to be able to walk a mile (I still get short of breath easily) by sometime next week and maybe two miles by the time I am four weeks out of surgery.

We’ve received the operative report and the pathology report and overall I think the news is pretty good. As we knew all along Dr. Reardon was able to resect 100% of the tumor. While I was on the operating table the checked the margins and the part of my heart where the SVC artery comes in didn’t have clean margins, meaning there were still traces of the tumor in the heart tissue they cut out, so he cut a little more away from my SVC and was able to get clean margins all around. Though the recurrence rate for these tumors is very high, the fact that he was able to get clean margins weighs heavily in my favor. We talked to him about the decision not to remove the sternum and he reiterated to us that it looked healthy and he didn’t think removing it was nesissary. We talked about the possibility of either treating it with radiation or removing it in the future if scans ever show the cancer I have (or had?) in that area to be active. I was concerned because in July, when the Taxol chemo stopped working, my sternum lit-up on the PET scan indicating active cancer cells. The hope is the AIM chemo killed them (we’ll get a better idea of that in February when I get scanned again).

The pathology report didn’t deliver the news I was hoping and since we haven’t met with my oncologist yet I am not sure how to take it. The tumor in my heart was 90% necrotic (dead) when it was removed meaning the chemo killed 90% of the cancer cells in my heart. Though 90% is a high number, 100% would be much better as this would show a complete response to the chemo. In theory, I think you can apply that 90% to all the active cancer cells in my body which means it’s unlikely the chemo alone was enough to kill 100% of the cancer in my sternum, spine and rib (hopefully the radiation took care of the rest in my spine and rib).

So the big question is what’s next? Though the primary tumor is now gone (which really puts my mind at ease) the fact that the cancer was metastatic means I have to stay vigilant and aggressive. The possibility that the cancer exists in other parts of my body but is too small to show on scans will always be there. When all is said and done I will be off of chemo for 10-12 weeks and if nothing happens (meaning I get clean scans) in that time I feel that means very good things. In my talks with Dr. Ravi it’s apparent that we are going to stay aggressive in combating this disease which means I will likely have two more AIM treatments (which will put me at my limit) and then move on to another chemotherapy to keep killing the cancer cells we can’t see.

I go home next week and I can’t wait to get back to Syracuse and the two feet of snow that’s there because something just doesn’t feel right when it’s January and there is no snow on the ground (though I am enjoying Houston a little!). I've had a lot of support from family and friends while I've been here and I am so thankful for everyone who came or helped out at home. Shana and my mother have been here since 12/22 with me and are taking such great care of me and I hope they know how much I love and appreciate them for everything they have done and all they have sacrificed (same goes for my dad, who went back to Syracuse last week). I can’t wait to get back to work and back to normal (at least what I think of as normal) sometime in the next few weeks.

I am working on getting the video and pictures from the surgery - still mulling over whether I will post them here or not, but I am anxious to see them. Thanks for reading my blog and thanks so much for all of the messages and support. I thank god everyday for all my wonderful family and friends and the messages, emails, texts and phone calls really keep me going. I am a pretty lucky guy.

Feeling Great!

Hey everyone. Let me first say THANKS so much for all the amazing support you've given me and my family over the last few days. We are blessed to have the family and friends we have and your messages, prayers, emails, texts, etc really mean a lot to me. We had a nice caravan of people here in Houston to support us - between my family and Shana's family, and I hope they all know how much it meant to have you all here. I also need to say thanks to the people who have been waiting on me hand and foot for the last few days - Shana, Mom, Dad, Matt and Liz...I love you guys so much.

The surgery was pretty much the easiest thing I've ever done. I remember being wheeled away from my family, telling them all I love them and then joking around with the anesthesiologistas like 100 people worked around me to get the operating room ready. My next memory, after that is waking up in the ICU with my family around telling me how well things went (I had no idea what they were talking about). The next few days were tuff, as they are on anyone that has open heart surgery, but now, five days later, I am ready to get out of the hospital and start getting ready for the next step. The pain is still there, but it's amazing how in 2-3 days it went from horrible (like keeping me from walking, getting up, etc) to just an annoyance. Just like my last surgery, it took them a day or two to figure out how to treat my pain, and once they got it under control things got MUCH better for me!

I am excited that the surgery was such a success. It feels really strange to sit here and know that this tumor, that's changed my life so significantly, is no longer in my heart. It hasn't really sunk in yet, I don't think. I am so relieved Dr. Reardon was able to remove 100% of it, and get clean margins, as I think that's very important moving forward. I am very excited about getting the pathology report on the tumor...we were told that most of it looked dead, but the question is how much. If it's 100% dead that means my treatment (chemo and WillPower!) is dominating this cancer, and can be an indicator as to how the treatment has worked in the other parts of my body this cancer has impacted. Dr. Ravi told us, as we left his office back in October, "if it's 100% dead, we will have something to celebrate". Even if it's 95% dead, I think that will be a huge victory.

I am not sure what to think about the sternum not coming out...we were told by every oncologist we've consulted with over the last 14 months that it would need to come out. I am happy to hear that it looked good, but part of me wonders if it will have to come out eventually anyway. We will have to go back to Dr. Ravi on that, but I think it's a minor issue at this point considering there are two other known spots where the cancer is/was (spine and rib) and those bones are still there. I am under the impression, however, that to go for a cure would include removing these at some point, which would include my sternum.

I have to say thanks as well to the surgeons, doctors, nurses, PCA's, etc at Methodist hospital. For the most part, they have all been wonderful to us. We've met some very caring medical professionals here and are very thankful for them. I will have a lot to post about in the next week or so and once my mind clears up a little and I get out of the hospital I think my thoughts will be much clearer!

Thanks again for all the support - I couldn't do this without my family and friends. I am working on responding to everyone in the next couple days (I hope you all know I can't respond to the comments section in this blog or I would respond to every one...but I do read them, multiple times!).

Still Recovering

Will's first night in ICU was a stressful one to say the least. In ICU there are six beds and three nurses constantly taking care of six patients. As to be expected, Will was in a lot of pain. The pain that he experienced the first night was the same pain he had the night he had the pericardial window done. Unfortunately, we were not able to sleep over night with him in ICU, so we were not there to console him. That is the hardest thing about being a loved one with someone in the hospital. You want him to always have a familiar face around him. The nurses in ICU are amazing! We got the best care there. Yesterday, Will was moved from ICU to a private room. This facility mostly has private rooms. He has been in a great deal of pain since coming out of surgery. The night he came out of surgery, they had to move him because they needed to change his sheets on his bed. Will said that the pain was excruciating when they moved him to change his bed. ICU nurses seemed to know how to alleviate some of the pain. Thank God, Team McCaffrey is here. With the collaborative effort from knowledgeable nurses in our family, and the relentless, "We aren't taking No for an answer" attitude, they are now giving him a narcotic that allows him to be comfortable. Last night, Will predominantly slept in his chair, and this morning he wanted to move from the chair to the bed. It is heart wrenching to hear the person that you love the most say, "I am going to die from this pain." We immediately got the nurse's attention, and she brought him some more pain meds. He is now back to sleep.

Even though, he really has no idea what day or time it is, I know that he is thinking (subconsciously ) about his Nana's house. Will's family has a tradition every Christmas Eve that they go to his Nana's house. This will be the first year in thirty years that Will be missing it. Even though, he will be there in spirit, it is just not the same. He just absolutely adores his Nana.

Will and I hope that everyone has a wonderful holiday and a fantastic New Year. In the midst of opening Christmas presents, drinking Egg Nog, and having a festive dinner, please remember to tell each other how much you love each other. I have been given the best Christmas gift EVER!

Thank you again for all of the prayers, thoughts, and love being sent our way!

Final Update

I am in the waiting room for 8:30 to come around because that will be the last time that we will be able to see Will tonight. I am so proud of him. When Liz, his sister, calls him Superman, or other people say that Will is Superhuman, they ain't kidding. He looks great, but he is in a great deal of pain. He has an incision from the middle part of his top chest to right above his navel. He is doing so well (considering his situation). He is truly a fighter. The nurses are scrambling around the other patients, and Will is just doing his own thing. They had to put a pace maker on him because his heartbeat went down to 39, 50 is where they want him. At one point, they thought he was anemic, but once again Will did a "Willpowerism," and he bounced back from that, so at this point, they are not going to give him blood. Dr. Reardon has visited him twice since surgery, so when I say that he is in good hands, he is in the BEST hands. This place is unbelievable! I can't say enough good things about this place. He drank some grape juice when I was in the ICU with him.

Thanks again to everyone for EVERYTHING that you have done for us. We wouldn't be where we are right now if it wasn't for your constant support. We hope that you have a great holiday and wonderful New Year... bring on 2010!

Got To See Him

We were all taken into ICU about fifteen minutes ago. Initially, we were all expecting the worst, but he looked great!

His nurse's name is Tracy, and her bedside manners are amazing. Immediately, we fell in love with his nurse. She gave us a tour of the many "lines" that he is connected to, and he is connected to a lot. She also told us about their strict visiting hours, but instead of just stating them, she also gave an explanations for each.

At this time, we are only allowed to visit him one at a time. Our spirits are lifted, and we are so grateful for the way they take care of us, and the way they are taking care of Will. We are in good hands at Methodist Hospital.

Simply, thank you!

Surgery is Done

One of the nurse's assistants asked for the McCaffrey family at 10:45. We were very nervous because I immediately thought something went wrong. The nursing assistant would not tell us anything. All she said was that we had to wait to get into the ICU unit, and a nurse will tell us information. It seemed like an endless walk to ICU even though it is only 30 yards away from where we were waiting. On the other side of the door was Dr. Reardon. He gave us the best news. The tumor was out, and surgery was done. It was even better when he told us that they didn't take the manubrium out because they didn't need to. The manubrium looked too good for it to be taken out. He said that it will take an hour for them to get him out of OR to ICU. I have truly received the best Christmas present EVER! The number of prayers that we have received is the number of "Thank You"s I have for each and every one of you. You have lifted his spirits up! Go Willpower!

9:30 Update

Surgical Liaison just told us that the tumor is out, and they sent the tumor to Pathology. Everything is going well in the operating room.

Surgery Day

Will had a restless night as to be expected. He has to be one of the strongest people on earth. As usual, he was holding his whole family up as he was being "wheeled" into surgery. It was a tearful "Good Luck", but we know he will be fine. We haven't had any updates, but he entered surgery around 6:45 Texas time, 7:45 Syracuse time. We have such a huge support (Bill, Carol, Matt, Liz, Aunt Kate, Sue, Joan, Michelle, Ryan, and Brooke) in this hospital, but we know that the circle of support of which YOU are a part is even larger. Thank you again for all of he prayers, love, and support! I know the reason why Will is doing so well is because of YOU! We love you. We will continue to update you as information comes to us. GO WILLPOWER!

The Countdown Begins

We got to Houston yesterday after a long, long drive (1700 miles, 25 hours driving) but we're here and after all my pre-op stuff today I'm ready as I am going to be for surgery tomorrow. Our condo is really nice and is only like 1 mile from the medical center so it's working out really well.

In our pre-op discussion with one of the doctors at Methodist I learned two things about the surgery that kind of freak me out. First, he said that depending on the exact location of the tumor, Dr. Reardon might decide to do an "auto-transplant" which gives him greater access to my heart. This consists of literally removing my heart from my chest and repairing it outside my body, then putting it back in. I have heard about this before and how it is used with tumor resection but always assumed that because of the location of the tumor it wouldn't be needed in my case. Dr. Reardon never mentioned it, so it's possible that it's not an option, but the doctor we met with today said that once he is able to see it, Dr. Reardon would make that decision an if he felt he could do a better job using that method, he would do it. It's really weird to think about that. I don't think it will be needed, but I could be wrong. I think this doctor just wanted to be sure to cover everything that could possibly happen. The other thing that really freaks me out is the possibility of "recall". I've never heard of this, and am hoping that it doesn't happen to me, but the doctor said that many (didn't really go into what "many" meant, but we are assuming it's a low percentage) cardiac patients actually wake up during the procedure to the point where they can hear the surgeon talking and feel what he is doing (not pain, but sensation) and will actually remember this when you wake up. He said that you basically become conscious but can't move, communicate or feel pain. He said that if it happens, not to worry, I wouldn't feel pain, but wanted me to be prepared for it. That's pretty scary - I really hope that doesn't happen and like the auto-transplant, think the likelihood is low.

Really, the two things that we will be waiting to hear is how much of the tumor they are able to remove, and how much of it contains "living" cancer cells. We've never had this conversation with Dr. Reardon, but we had it with the surgeon in Boston, and are under the impression that there is a high-likelihood that he will be able to remove 100% of the tumor because of it's location and the fact it's only attached to one wall of the atrium. We will know right away how much of the tumor he is able to remove. They will test the tumor to see how much of it consists of living cancer cells, and according to Dr. Ravi, if the tumor comes out 100% dead, it's a VERY good sign for my long term prognosis. He cautioned us that the chances of this are low, but given that the tumor hasn't changed size in a long time, it's a possibility. We won't know the results of that test for about a week (maybe longer because of the holiday), so we will be anxiously awaiting those results.

I am pretty excited about getting this done and after a week or so, the worst should be behind me. The doctor said they'd give my family updates every two hours once the surgery starts (he said that it should take all day, but we are guessing that it will be done by 1 or 2 pm) and Shana will updating the blog. Thanks for checking, thanks for all the prayers, thanks for all the emails/texts/calls and I look forward to updating again once I am able to lift a laptop.

Surgery...it's really going to happen!

Well, the last few days have probably been the most difficult I've had in a long time. On Tuesday, the tumor review board at Methodist Hospital in Houston (where I will have the surgery) and a group of doctors from MD Anderson (Dr. Ravi's group) both met independently to determine whether or not surgery was reasonable. I'm not generally a pessimist, but I couldn't shake the feeling that this was going to be a repeat of what happened at Dana Farber in July, when their group of doctors determined that I was not a candidate for surgery.

I've been given the best Christmas gift ever as I will be on the operating table on Tuesday, December 22nd (time TBD). This surgery is my only chance at being cured and I am so happy, excited and grateful that I will be given this opportunity. I feel like everything I have gone through the last fourteen months (34 Taxol treatments, 6 AIM treatments that required 5 day hospital stays each, 20 days of radiation to my spine and ribs and a VERY painful surgery to drain fluid from the space around my heart) has been done with this as the ultimate goal. Given what I have, I feel very lucky to be in the position that I am in and I have got to be the only guy in the world that's actually looking forward to open-heart surgery.

My oncologist, Dr. Ravi, has been very stern the last few times we talked about the risks involved with this surgery. We talked at length about these risks and I accept them, and firmly believe that this is the right decision, no matter what the result. The primary risk is that there are cancer spots in my body that are too small to be detected by scans - this is something that I have been told is likely many times over the last 14 months. If there are, once I have the surgery, I am essentially defenseless against them. Given how aggressive this cancer normally is (though I don't think mine has been that aggressive) I can understand why they are worried about that. I believe I can go back on chemo (which I am going to do to stay aggressive) 5-6 weeks after surgery. Believe it or not, I am looking forward to seeing what happens when I am off chemo for 10 weeks as I will be for this surgery. This is something I have to do sooner or later.

The other risk is the surgery itself. I am sure there are many things that can go wrong with this surgery. Dr. Reardon gave us some examples, but I think my overall health, age and strength all give me advantages going into this surgery. On top of that, Dr. Reardon is one of the most (if not the most) experienced surgeon out there when it comes to tumor resection. When Dana Farber was considering surgery they consulted with him and if you Google the surgery his name comes up very frequently. Patients come to see him from all over the world, so I feel very lucky to have him as my surgeon. When you talk to him his confidence is very reassuring.

Here is what I know about the surgery. The surgery will be on 12/22 and I will be in the hospital from 8-10 days. There will actually be two parts to the surgery (not sure which order they will be done in). Dr. Reardon will remove my sternum (part of it anyway) which is the bone that connects your ribs and protects the organs in the center of your chest. This is because the cancer is there and we opted not to treat it with radiation because of the proximity to my heart. The major part of the surgery will be the tumor resection. The tumor is in my right atrium and is located on the outside wall. Dr. Reardon will remove the tumor and some of the atrial wall (I belive the tumor is about 3.5 CM right now) and then rebuild my right atrium using synthetic cardiac patches (I know they have a name but I can't remember them).

I know there are hundreds of people who have prayed for this and I thank you so much for all your support. I feel like a broken record when I say THANK YOU so much for all of your support but it means so much to Shana and I, and my family and you've all helped me get this far. I couldn't have done it alone. I will be sure to keep the blog updated as I learn more over the next 10 days or so, and I will ask Shana to update the blog the day I have surgery. Spending Christmas in the hospital will be interesting, but this is the best gift I could ask for (and hopefully it will be nice and quiet!).

Nothing is simple...

I am getting ready to catch a flight back to Syracuse (in six hours) after a very long week in Houston. I spent 4.5 hours in an MRI machine between my cardiac and spinal MRI, had a very positive meeting with my potential surgeon (Dr. Reardon) and then a not so positive meeting with my oncologist (Dr. Ravi). On top of that, it snowed here (very rare) and the play we had second row seats to tonight got cancelled...because of like 2 inches of snow. Being from Syracuse, we obviously got a good laugh out of that. At least they refunded our money!

The meeting with the surgeon was very positive. We talked a lot about the surgery, his experience with Cardiac Angiosarcoma, the risks, the recovery, etc. We left his office with the understanding that if MD Anderson (and Dr. Ravi) felt strongly that surgery was the right thing to do, that I would be back here in 2-4 weeks for surgery. Dr. Reardon talked about the risks of this surgery, and explained that many of his colleagues would be against this operation because of those risks (and the fact that my disease is metastatic, which makes me a lost cause according to textbooks), but said that he's willing to be agressive and do it if there is a chance that it means I can live longer than I would without it. We left his office feeling VERY confident that this surgery was going to happen. The only hurdle, from his perspective, is him convincing the "tumor review board" at Methodist Hospital (in Houston) to approve it, which he said shouldn't be an issue if MD Anderson (the oncologists) was strongly behind it.

Then we met with Dr. Ravi. Good news first, all my scans were clean - the cancer spots we know about are "stable" and nothing new has shown up. But then he told us he has concerns about the surgery and is not sure if we should go to surgery or continue to treat me with chemotherapy. I trust him very much, which is why his doubts are so concerning to me. He relayed a VERY stong message to us today, and that's that this surgery carries a tremendous amount of risk with it. He said that I've aced everything to this point, but didn't want me (and my family) to let the success so far cloud the fact that this surgery could cause things to go very bad for me very quickly. The real question is whether or not we want to persue a curative approach (using the word "cure" very loosley). My only chance of being cured is surgery, and there is a very low probability (statistically) that they are able to cure me, and that approach comes with a lot of risk (high-risk, high-reward). Continuing on chemotherapy should buy me time (how much nobody can predict) but won't work forever and will not cure my disease (low-risk, low-reward). And the fact is, if I decide to have more chemo and at any point in that a new spot pops up, surgery is off the table. The only resaon they are considering it now is I've gone so long without any new spots, which is rare for a cancer this agressive.

I have had my heart set (no pun intended) on this surgery for 13 months and I have been very confident that it's the right thing for me. After our conversation today with Dr. Ravi, I am less certian and more scared than I've ever been, but as Dr. Ravi told us, it's his job to keep us grounded and not let us forget what we are dealing with. He is presenting my case to his peers on Tuesday night, at which point he will make a recomendation to me whether or not to have surgery. I worry that if his peers feel strongly that surgery is the wrong choice that I won't even have an option (exactly what happened at Dana Farber in June), so I am praying that they want to be as agressive as I do. I am willing to take the risk - I feel I have nothing to lose (but time) and I'd prefer to attack this cancer rather than sit around and wait for it to attack me.

I am expecting a call from him on Wednesday (12/9) to have the conversatoin that ends with me knowing definitivley what's next. I will be sure to post as soon as I hear!

Thanks to everyone for checking, emailing, texting, calling and all of your support. It means the world to me and keeps me going. Everytime I get down about this, there is another message (email, text, etc), phone call or card that picks me right back up and I really appreciate it.

It's been ONE YEAR!!!

Well, it's been a year since my diagnosis and I think I've grown more in this past year than any year of my life. Obviously there have been a lot of hard days and times, but there's been some great times as well, so looking back, I'd say I've had a pretty good year. I consider myself very lucky and aside from a miracle, I don't think I could be in a better situation with this cancer than I am right now, and I am proud of how far I've come, and how positive things have gone over the past 12 months. I could use a break from the chemo, but I am not much of a complainer.

I just completed my fourth chemo treatment of the AIM regimen and it's really horrible for a couple of days, then it's not so bad. Being in the hospital really sucks - for the first few days I can work, read, etc but the last two or three days, when the drugs start to hit me, I don’t do anything but lay in bed, half conscious, often not knowing what day or time it is - that's the worst part of it. I have visitors that I don't remember, I hallucinate pretty bad the last two days and I absolutely HATE being in the hospital. That's the worst part - it would be great if I could be home, in my own bed (chair or couch), but being there, as GREAT as the staff on Four South are, really, really sucks after six days. I love the staff there though - the doctors, PA's, nurses and assistants are amazing people and do work that I couldn't imagine doing…thanks so much to them and the way they treat patients (and patients families!).

There have been some stupid complications - like an infected port (the thing they put my chemo in through in my chest) which is requiring me to get IV antibiotics at home through a machine, which is very disruptive to Shana (not so much to me since I just sit here and work all day anyway).

Before my last treatment we took our annual football trip, and like usual, the Bills got ROLLED. Next year we are going to a Giants game so we can see a NY team win. Miami was great, the weather was amazing and we saw a Metallica concert (it's been like 15 years since I've seen them and they rocked!) which was great. It was a nice break, and because of it I got an extra week between treatment which I think helped me a lot.

Coming up for me are two more chemo treatments from Crouse (hopefully only two!) We are going back to Houston next week to get scans and meet with Dr. Ravi, and we will push him to give us a little idea of what he thinks is next. As I have been saying for 12 months now, I am hoping it's surgery, but you never know, he could opt for more chemo (but as I said above, I need a break from this stuff). I will have my last AIM treatment (for life as any more would be too toxic) in mid-November and then I am hoping we can get surgery scheduled for sometime in early January (in Houston). Fingers crossed…

I've got a lot of emails over the last few weeks and I can't believe it's been over a month since my last post. I pledge to keep this blog updated more frequently because I know people that care about me are checking it and I VERY much appreciate it, and continue to appreciate all of the love and support we get from the wonderful people in our lives!!

Houston Update & Treatment #3

Hey everyone!!

We had a very quick trip to Houston last week (Shana and my mom were there for less than 18 hours!) and it went well. On Thursday I had a full set of scans done (PET/CT and Cardiac MRI) and on Friday morning we met with Dr. Ravi. The news was good - the cancer tumors that were active at the end of July (heart tumor and sternum) were no longer active so it appears that the new chemotherapy I am on is working. Since I had the MRI late Thursday afternoon and met with the doctor early Friday morning we weren't able to get the results of that, which would tell us the size of the tumor. Dr. Ravi said he'd be surprised if it hasn't shrunk and I am waiting to hear from him about that.

Overall it was a good trip and it seems that everything is going in the right direction. We talked to Dr. Ravi some more about the future and what lies ahead once this treatment is done. It looks like I am looking at 4-6 more treatments (probably six if I keep tolerating it the way I am) which would take me right to the end of the year. After that I have been thinking that the open heart surgery that I want so badly would be next, but Dr. Ravi said that all depends on the circumstances at the end of this treatment. He said it's possible that instead of surgery I might have another six months of a different chemotherapy instead, then surgery.

We really like Dr. Ravi and his approach to my treatment. When we were at Dana Farber we were told that since the cancer has spread from it's primary location (stage 4) I can't be cured and they wanted to tailor my treatment to that point of view. For example, at one point they told me that the next thing I should do is have radiation to my heart. We even went to Boston to meet with the proton beam specialist. This treatment approach concedes that I can't beat this cancer as it makes surgery VERY difficult (and highly unlikely), has potential to do long-term damage to my heart (if the belief is that I can't win this battle, that doesn't matter) and as I was told in October, is a last resort and palliative treatment. With that said, we REALLY liked Dr. Butrynski but when they cancelled my surgery we knew we needed another opinion and this is how it worked out. Dr. Ravi told us that conventional medical wisdom says that what I have is incurable…but he doesn't believe in conventional wisdom and he will approach my treatment having a goal of curing me, and we have a lot of options to exhaust. It was great to hear that. I'm not looking forward to all the treatment that's in front of me, but I am looking forward to beating this cancer, so I will take it. He said that the curative approach would include chemo (and other cancer drugs) as well as surgery to remove EVERY cancer infected area in my body. That surprised me a bit since the tumors in my vertebrae and rib seem to be gone because of the combination of chemo and radiation, but when I asked him he said basically, if we are going to cure you, we have to cut it all out. I imagine this will take years…but I am willing to do it. Dr. Ravi is very young and very knowledgable about my specific cancer and you can tell that he's willing to push the envelope when it comes to the approach to treatment. We are very excited to have him as our doctor and we are very confident in his knowledge and experience with what I have.

We closed off our conversation with him with a discussion about how I am doing now. Someone asked him, "overall, how do you think he's doing?". His answer was pretty simple - he's doing great right now and there's reason to be optimistic, but let's not celebrate. He reminded us of something he told us last time, which is that angiosarcoma patients with bone metastasis tend to have a worse prognosis than patients who don’t. You could tell that he wanted us to have a positive attitude about how we'll I am doing, but at the same time he reminded us that I have a long way to go.

I am getting treatment this week (which sucks!!!!!) and we'll be going back to Houston sometime in mid October for my next set of scans. I will update soon about ho w chemo #3 went as well as when I get the results of the MRI. I am looking forward to good news about the size of the heart tumor!! Thanks for checking my blog!!

Treatment #2

I had my second treatment last week and it was not fun at all. I was in the hospital from Monday to Saturday and it was a very difficult week…between the tiredness, nausea, confusion and all the other crap you experience when on this stuff, it wasn't a lot of fun. By the end of the five days, just brushing my teeth was something I would lay in bed and think about…it's hard to describe what it's like when such a trivial task becomes so difficult, but for some reason it was. One minute I'd be fine, and I would lay down for a quick nap, then wake up six hours later and have no idea what day it was or anything. It's funny though, because within one day of getting out of the hospital I started to feel better and literally got stronger and felt better every hour. By now I am starting to feel normal again and I should be recovered just in time for my next treatment! I've lost my hair, finally and I think I look funny bald. Good thing for hats!!

The worst part is just being in the hospital (it feels like I've spent half of August in the hospital…close to it). The staff at Crouse are awesome, and make it a lot better than it could be, but just laying there in that 8x10 room for so long really takes it's toll on you. You start to feel like you don't want to do anything but stare at the clock and count down the hours until you go home. Because of the chemo I don't eat most of the time I am there (I eat more towards the end of the week), so you get weak and by the last day I am literally sitting there starting at the clock.

The next steps are going back to Houston (this week) to make sure the treatment is working. I am pretty sure it is, but they want to be sure before continuing me on this therapy. I will have the regular tests done and then we will meet with Dr. Ravi to see whether the tumor has shrunk since treatment started, as well as to see if the other spots are still active. It will also be important to make sure there aren't any new tumors. After that, I go back to the hospital on Tuesday to start my third treatment (I go in Tuesday because of the holiday). We are going to talk to Dr. Ravi about the potential of getting the therapy as an outpatient, but I am not going to get my hopes up on that.

Even though these have been the worst weeks of my life, I've still got a great attitude about this. I tell myself all the time that this treatment is what I need to survive this cancer and I am willing to endure it for as long as I need to if it will put me in remission. My support system is amazing - Shana, my parents and family are always there when I need them, and I am so grateful for them. Thanks you guys.

Finally home...

After 9 days in the hospital I finally got home this afternoon. These past few days have been hell for me (I guess I'm difficult!) and I'm still in a tremendous amount of pain from where the chest tube was pulled out today. I am currently neutropenic (extremley low white blood cell count) and my doctors basically ordered me out of the hospital because of this (it's much more risky to be there than to be at home). I guess this is the only time I will be happy to be neutropenic (of course I can't leave the house without a mask or have visitors until my counts come back up which should be a couple of days).

So, I don't even remember the chemo at this point. The surgery, and the issues we had after far overshadow the chemo and I am hoping that the next round (scheduled for August 17th-August 21st) will be an "in and out" in five days sort of thing. We'll see, but as far as I am concerned, after what I went through these past few days, the chemo felt like a walk in the park (that I didn't remember). I have to thank the staff at Crouse Hospital - they were all so wonderful and sympathetic to us. They really make a horrible time better for us.

The surgery I had was called a "pericardial window" and I have to thank Dr. Gorman for his work in getting me into the OR as fast as they did. Because of the chemo cycle this surgery had to be done the day it was, or we would have waited until the next cycle, which could have been very bad for me. Basically Dr. Lutz (the surgeron, who was awesome) went in under my ribs and removed a pretty good sized piece of my pericardium. This allowed for fluid to drain (which hadn't been happening) and amazingly, I'm told that over 1.2 litres of fluid came out. I kept imagining a litre sized gatoraide bottle just sitting in my chest cavity putting pressure on my heart. It's hard to say right now if theres a difference because I am in EXTREME pain from the surgery, but I can say that my airways and breathing do feel great.

When I came awake from surgery I was confused and fighting and had to be restrained. In my life I've never felt more pain and I remember begging for relief as they wheeled me to the recovery room. We would spend the entire night like this. I will say that the staff at Upstate (I was transferred there from Crouse for surgery) were great and they tried their hardest, even though it got very tense. I can't even describe how my family must have felt watching me, screaming in pain with nobody really knowing what to do about it. I know it was pretty rough for me...and today was really the first day the pain dropped below a "six out of ten".

I knew this would happen eventually. I've been living with this cancer for near 10 months now and it's been fairly easy on me, with a few bumps here and there. Now that I will be going through this new chemo things are going to get rough (as they have) but I keep telling myself that I know why I am doing this and this is the means to an end.

Thanks SO MUCH to everyone who texted, emailed, called and visited while I was in the hospital. Though I didn't have many opportunities to respond back, those things mean so much to me. Thanks for all the visitors as well, it was really great to see the family, friends and co-workers who stopped in to support me. And finally, thanks again to my family (and Shana's family) who just never stopped being there for us...my parents, in-laws, siblings and other family members were great. I love you all! (and Shana...you're the best!!).

Update...From the Hospital

Hello, thanks SO much for all of the texts, emails and phone calls over the last week. Sorry I haven't been able to get back to people one-on-one like usual, but it's been difficult. It's safe to say that this has been the worst week of my life and I am stuck here (in the hospital) until at least Tuesday as they plan to do the small procedure on Monday (called a pericardial window). They think the fluid around my heart needs to be dealt with so that's why I am still here and why I will be here through the weekend.

The chemo was rough...luckily I slept through the first three days of it (this concerned my doctors a little as they weren't sure why) so it was easier for me than it was for my family. The hope is the next round won't do that to me. I don't really know what happened, one day it was Monday and I don't remember anything from then until about yesterday. I guess that's good...

I will be keeping this blog updated the next few days. The plan right now is to deal with this effusion early in the week and then take a couple of weeks off before I start the second round of this chemo. Thanks everyone for all of your well-wishes, texts and emails - I've got them all and though I haven't responded I've been reading them and I appreciate them.

Decision Time...Again

This week has been another rollercoaster as my doctor in Boston, whose carried me this far, reccomended a different drug than the doctors at MD Anderson in Houston. I was very excited (strange, huh?) about the chemo that MDA was reccomending because of their confidence in a curative approach and having surgery come next, but my loyalty to Dr. Butrynksi in Boston, and the fact that I am doing MUCH better than expected (not by me) because of him made this very difficult for me. He told me that this regimen (called AIM) given over five days will be very rough on me and he thought he could achive the same results with a different, less toxic drug. He was very clear that he wasn't reccomending against the AIM treatment, which was a key factor in my decision. I have also been in contact with two survivors who have had this same regimen, which really sealed my decision.

So in two weeks I check into the hospital for 5-6 days to get a 5 day long infusion of two different drugs, as well as another drug that protects my bladder as the chemo is very toxic while it collects there. These drugs are also heart and kidney toxic, which is why I need to be monitored closely for my first treatment. The treatment consists of drugs called doxorubicin (adriamycin), ifosfamide and mesna, abbreviated AIM. I will be in Syracuse (at Crouse) for this treatment and am hoping that after the initial infusion I will receive my next ones as an outpatient (from home). I will have sixteen days off between treatments as long as my blood counts recover in time for the next treatment. After two cycles I will return to Houston for a comparison PET Scan (they want me scanned in the same hospital for consistency). After that I hope to return to Boston for scans, if possible.

I know this one might be ruff on me (and I will probably finally lose my hair) but I am excited because Dr. Ravi (in Houston) said there is a good chance that it completley kills the heart tumor and the other active spots. He said even if the tumor vanishes (and leaves behind scar tissue) they will operate because the recurrence rate is high, so removing that tissue is crucial. The goal is essentially for me to receive 6 rounds of this chemo (three week cycles) and then go to surgey if all goes as hoped.

I do have another small problem and that's a paricardial effusion (fluid) around my heart. I think its causing some pain, swelling and shortness of breath. They say it in my last CT in June and I followed up with Dr. Gorman about it. An echo showed that it was small and hopefully not much of a concern. The impressions from the PET I had in Houston said that it had grown since my last scan, and luckily I have a follow-up with Dr. Gorman on Monday. I am hoping this doesn't become an issue as if it does it would have to be drained (with a needle I think) or even worse would need to be fixed surgically. That would probably interfere with my chemo, which would be a bad thing at this point. I am hoping to know more on Monday about that.

Thanks for checking and since there is a lot going on I will probalby be posting/updating frequently. I'm ready to move on to the next stage of this, knowing that things now get worse before they get better, but that's OK.