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.

Good News & Bad News

On Thursday in Houston I had a PET Scan and a Cardiac MRI as the oncologist at MD Anderson wanted to see current scans for himself before giving us his prognosis and opinion. The cardiac MRI was horrible...it was over two hours (usually its about 1.5 hours) and I had to put my arms above my head. It was so uncomfortable...good thing I'm not claustrophobic.

The bad news is that it seems the Taxol (chemo) has stopped working and my cancer is active again. My heart tumor and the tumor in my sternum have grown since my last scans, and they both "lit up" on the PET scan. Though we were hoping the Taxol would keep things at bay for longer, 9 months is pretty good as they told us in Houston they usually expect a response for around 5 months.

The good news was that after seeing my scans Dr. Ravi was very optimistic about my case and long-term outlook. He told me that my scans look surprisingly good for someone with metastatic disease after nine months and referred to my oncologist in Boston (Dr. B) as an "artist". He also said that most metastatic cardiac angiosarcoma patients look like they been through three tours of Vietnam after nine months. His optimism was very well received and he used the term "curative therapy" multiple times. After he left the room after that meeting it was the first time since I've been diagnosed that I saw Shana and my mom cry and it didn't break my heart (happy tears!).

He did remind us that though he's optimistic, this is still pretty serious and even more complicated because my disease has spread to my bones. When I mentioned his use of the word "curative" he reminded us that they use that term very loosely with Sarcoma's as they technically aren't curable. I think he wanted to make sure that we didn't misread his optimism...we still know what's facing us. So, after his prognosis came his recommendation about treatment. He said I have two options...surgery now, chemo later OR chemo now, surgery later. Since my goal is to have this surgery, hearing him say that made the trip to Houston worthwhile. I've been saying all along that this surgery is a giant leap to me beating this cancer, and after the roller coaster of being told that I was going to have it, then that I was probably never going to have it, just knowing that it's back on the table makes me feel great. He did explain why it's better to go with chemo first (that's another post), so that's what I am opting for.

Now comes the fun part of coordinating between three doctors, one in Syracuse, one in Houston and one in Boston to figure out when I am going to start my new regimen and more importantly WHERE I will start it. We are waiting to get the MRI comparison done to see how much the tumor has grown (in my heart) and that will determine how soon we need to start (if it's grown alot I imagine I could be on this new chemo within two weeks, if it's minor then we might be able to take our time).

So, overall, even though the fact that the tumor and sternum site is active and growing is bad news, it didn't really matter because the overall news and opinion was very positive. I'm starting to research the next chemo regimen I will be on (Adriamiacin and Ifosamide) and will update my blog with some info about that when I find out the details (when, where, etc). Thanks again everyone for all of your support - I really feel that after 9 months things couldn't be going better for me with this. My attitude and my ability to fight this is strengthened by the support that we have received and continue to receive from our amazing family, friends and co-workers and I firmly believe that your support and encouragement have carried me this far, so thank you. Of course, I also have to thank my team of doctors (Dr. Butrynksi, Dr. Scalzo, Dr. Gorman, Dr. Kotlove and now Dr. Ravi) who are amazing doctors and amazing people.

Update From Houston

We are in Houston this week and so far it's been pretty overwhelming. MD Anderson is huge - much larger than I expected, as is the medical center that it's part of, which is like it's own city. It's hot here (almost 100 degrees) but we're making the best of it (there's lots to do in Houston!) as I got so spend some time with a good friend who I haven't seen in awhile, the Astros are in town (they suck but baseball is baseball!), Phantom of the Opera is here and we can tour Reliant Stadium (where the Texans play football).

I feel overloaded with information, as the opinion of the oncologist we met with yesterday is different than that of any doctor we've met so far, so my list of options essentially got longer yesterday (and got shorter today, as you'll see). I will go into more detail after we meet with him again (after my tests) but his opinion is that now is neither the time for surgery or radiation, but is the time to switch to a more aggressive chemotherapy regimen, one that doesn't sound appealing (not that any do...). The combination he is suggesting would require a five day infusion (in the hospital) with three weeks off between treatments. Once I know more about this I will post more details.

Today we met with Dr. Michael Reardon, a cardiac surgeon that specializes in tumor resection. I can say for certain that if I ever have surgery (still praying that I get the opportunity) this is the guy I want. People come from all over the world to see him (there was a Greek family here today) and next week he and his team are traveling to Israel to remove a sarcoma tumor, so we were pretty impressed with this guys resume. The first thing he told us when he sat down was that I wasn't a candidate for surgery, for all of the reasons we've already known. My goal in meeting with him was to learn exactly what has to happen for me to become a candidate for surgery and I was disappointed that there really isn't a clear answer to that. He left the door open for surgery in the future, telling me that if and when my oncologists thought it would benefit me, he would be open to discussing it.

My goal is to have surgery as removing the tumor is a huge step towards being cured (using the word cured VERY loosely). I have made up my mind, I think, that I won't pursue radiation (to the heart) as this would jeopardize surgery in the future, but I still have to make a final decision as to what direction to go. We joked today that I am going to put a poll up on my blog and let my friends and family decide (you know...like a lifeline) what I should do. I don't know what I need to accomplish to be eligible for the surgery, but every decision I make will have that as the end goal. As I've said, they don't want to do it because it's spread outside the primary location and the metastatic disease is more of a threat to me than the primary tumor at this point. If I am able to fight this cancer off and keep it from spreading to new areas, as well as keep the current areas under control, for six months or a year I think surgery will be a more realistic option. So that's what I have to do...keep on fighting, get more chemo and I will eventually get the treatment I want.

The great thing about this place is that as I interact with people and tell them what I have they don't look at me like people do in other places (that "holy crap...you have WHAT??" look I get when I say "heart cancer"). The oncologist I met with has six other patients with cardiac angiosarcoma and Dr. Reardon removes cardiac tumors pretty regularly. It feels good to find a place where people are familiar with this and where I am not the exception.

Tomorrow (7/8) is our third anniversary and I am so grateful that I have Shana in my life. Three years ago she vowed to be here for me in "sickness and health". At the time those words didn't mean much to either of us, I don't think. We were young, in love and life was good - and we had no reason to think that "sickness" meant anything more than the flu or a cold (or in my case a hangover). Now, those words carry more weight than anything we've ever said and she's held up her end of that deal and I thank god every day for her. I am a lucky guy. We had a great trip to New York City last week to celebrate as I dragged her to a Yankees-Mets game at Citi Field (Rivera's 500th save!), a game at the new Yankee Stadium (which was awesome) and saw Phantom and Wicked on Broadway. We were going to go to Vegas but we decided to stay close to home - and we made the right decision as the trip was AWESOME.

I will update again soon about the rest of what we learn in Houston. I also want to thank my mom and dad as they are here with us, and they continue to disrupt their lives to be here (and everywhere else) to support me every step of the way. I couldn't do this without my family and their support and I spend hours thinking about how lucky I am to have such great parents, such a great brother and sister and such a great extended family. I have no idea what I would do without them. Thank you all so much.