Monday, December 28, 2009

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!).

Thursday, December 24, 2009

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!

Tuesday, December 22, 2009

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!

Monday, December 21, 2009

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.

Thursday, December 10, 2009'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!).

Saturday, December 5, 2009

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.