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!