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!!