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.

Weighing my options

We were back to Boston this week and had a pretty positive meeting with Dr. Chen at the Proton Radiation center and Dr. Butrynski (my oncologist at Dana Farber). It seems the more information we get and the more we learn about my situation, the more confused and frustrated I get about what to do about it.

The proton beam radiation is a very interesting option. I have to say I feel a little better about the possibility of getting radiation directly to my heart, but its still not ideal, even according to Dr. Chen. As I've said before, Boston is one of five places in the US where you can get proton beam radiation and in six years they've only treated 18 patients with radiation directly to the heart. The benefit of radiation is that there is a 70% chance they can kill the tumor without having to put me through a very major surgery, but there are a few issues. First, it's a one shot deal. Once I have this radiation, I can never have it again in the same spot on my heart and cardiac tumors have a high recurrence rate, so if it returns a second time, radiation won't be an option. Second, surgery will be much more difficult to do because of the scar tissue the radiation will create (but not impossible). The damage done to my heart won't be as bad as it would be with other types of radiation because they are confident they could deliver this radiation without hitting my ventricles (the pumping chambers of the heart). They would hit my tricuspid valve, which could mean future valve problems, and because the radiation field would likely hit my entire atrium, it could cause significant conductive problems with my heart. These are all manageable however. The caveat given by Dr. Chen is that they only have six years of data to go by, to the long term effects aren't known like they are for other types of radiation. We were very impressed by this option, and IF surgery ultimately isn't an option for me, I will probably accept this treatment. If I do that will mean two things. First, roughly 10 weeks off of chemotherapy (scary) and second, seven weeks in Boston (like were not there enough).

Now, about the surgery, Dr. Butrynksi talked to us for over 2.5 hours yesterday, and much of that was spent discussing the decision to not do surgery. He did confirm that surgery is the best option, but explained the many individualized reasons why it might not be the best option for me (and explained why his colleagues believed this). One thing that is clear, Dr. Shakar (the surgeon in Boston) will not operate on me. We are meeting with Dr. Reardon (known as an authority on heart tumor surgery across the country) in Houston and Dr. Butrynski said that if he agreed to operate on me than he would support it. I am not going to get my hopes up, but I am glad that there is a possibility that I will be able to have surgery AND keep Dr. Butrynski as my doctor.

He also mentioned something interesting, and said one difference about my case that may give me an advantage is the fact that the metastatic disease hasn't spread to any of my soft tissue organs. He said that most commonly (still VERY uncommon) the disease spreads to the liver or the lungs, and the fact that it's only in my bones might be a good sign. We'll see.


I'm feeling great and ready to start another round of chemo tomorrow (treatment #31). The next step is Houston (early July) and after that a decision has to be made whether or not I am going to opt for surgery or radiation. I'm really excited to get going on one of these. Thanks for checking my blog and I will post again soon!

Quick Update

It's actually been a pretty busy week as I have had a bunch of appointments, and have a bunch more scheduled (including Boston and Houston). We go to Boston next week to meet Dr. Chen, who will discuss the option of proton radiation with us. I am looking forward to this because we will find out how much damage this radiation will do to my heart. We also get our appointments for Houston (MD Anderson Cancer Center) for the first week of July and I am looking forward to getting their opinion as well. When in Houston we are meeting with two doctors - Dr. Ravi (with MD Anderson) and Dr. Reardon, a cardiac surgeon. I am not sure what to expect from this...other than to get another perspective.

I finished up a round of chemo last week (I have tomorrow off from chemo) and start another round of six treatments next Friday. As usual, I had some scans to check the status and there were some minor issues with my scans. Dr. Scalzo was concerned because the tumor measured a half centimeter larger than it did six weeks ago and one of my lymph nodes also measured a little larger. If I wasn't going to Houston in three weeks Dr. Scalzo would have ordered another PET Scan and Cardiac MRI (these are more detailed scans)as he was a little concerned. Since I will be getting those done in Houston, though, he decided it's OK to wait until then. Another issue that my recent scan showed was a pericardial effusion (fluid around the heart). I had this when I was initially diagnosed, but it went away after treatment started, and now it's back. I am not sure what that means, or why, but I have an appointment with Dr. Gorman, my cardiologist, on Monday.

It was kind of funny because the report from the CT scan said, in the same sentence, that there was a slight increase in the size of the cardiac tumor, but subjectivley there was no change. This was explained to us that the increase was small enough that it could be attributed to the position I was laying on the table, the position of my heart or the way the image was read/measured. My only concern is that this is really the first time the tumor didn't shrink...but I am not that worried about it. The CT scan isn't as detailed as the MRI, so when I get that in July we will see what happens.

Still working full time and feeling OK. The chemo is definatley affecting me more, but not nearly as bad as it could be, so I am happy for that. The question now seems to be how much longer this chemo is going to work for. We talked to Dr. Scalzo about it and he said at this point it could stop working any time, or could continue working for another year. I hope it keeps working for as long as possible because I don't mind the side-effects of Taxol, and I'd prefer not to have to try another chemo for a long time.