Saturday, March 21, 2009

Radiation Update

I started radiation therapy last Thursday and have had seven treatments already (my treatments are every day at 8AM). They are treating my 11th rib on my left side and my T4 vertebrae in my upper back. The treatment takes about 20 minutes and is pretty uneventful. I just lay on a table and this HUGE machine with four arms moves around me and buzzes. I don't feel anything (except anxiety) and then I am done. It "zaps" each area twice (once from the side and once from directly above my body). The machine is aligned by lasers and markers on my body and it basically get's aligned and takes an X-ray to ensure it's in the right spot, and then gives me a 20 second dose of radiation. The people there are extremely friendly. I have to say that my experience with Hematology & Oncology Associates (HOA) which is my treatment center in Syracuse has been amazing. Everyone, from the administrative staff, the nurses, the techs, the PA's, the research staff and the doctors have been amazing. They are so friendly and always smiling and really help to make a bad experience better. The work they do is so important and I grateful for everyone of them.

The side effects of the radiation are exactly as described. I was told that radiation doesn't have many, except when done at the same time as chemo, as it kind of intensifies those side-effects. So I am basically more tired and fatigued now, and sometimes my body feels like it's just getting old (I move slow, my joints are sore, etc). On top of that, since the radiation field passes through my esophagus , I get a sore throat once in a while. I am told that this will get worse over time, and will eventually make it difficult to swallow, but will go away soon after I stop radiation (my last dose is on April 7th). I really just don’t like the idea of radiation, but I do like the idea of it stopping the cancer from doing further damage to my T4 vertebrae, as the issues that it can cause in this specific area of my body can be pretty serious.

I had my 20th chemo treatment on Friday. Four more to go before we head back to Boston for another full set of scans and to learn what's next in my treatment plan. I am not even going to try to predict what's next…but I know we are meeting with the surgeon, so there is a chance that we go in that direction next. I am curious to know how the discovery of another spot (my L2 vertebrae) will impact their decision. The reason they don't want to do surgery now is because they are worried about taking me off chemo…they are worried that the cancer will spread more as it's usually very aggressive. Of course that's what I am worried about too, but part of me still wants to get this surgery over and done with, and behind me.

Remember to check out my Heart Walk webpage for the Syracuse Heart Walk that's on April 18th. You can check it out at

I figured I would throw this in at the end of my post this week. A few people have asked me what the difference between chemotherapy and radiation therapy are. To be honest, until my Pa (god rest his soul) got cancer in 2007 I didn't know the difference either. So, in case anyone is wondering here is the most basic explanation I can give you. Chemotherapy is a medication that is given either orally or through direct infusion into the blood (which is how I get it). It's a systemic treatment that treats your entire body. It's basically a poison that kills fast growing cells, which include cancer cells (as well as other, healthy cells, like hair, blood cells, etc). Radiation therapy is a local treatment, that targets a specific site in your body and uses radiation "beams" to burn/kill cancer cells to stop them from growing. Unfortunately, radiation can also damage healthy cells, but as the technology gets better they are better able to control and minimize this.

Finally, I want to continue to thank all of the people in my life who continue to help me through this. There are way too many people to name, but as I have said since October, I am the luckiest person alive because of the support system I have. My wife, parents, siblings, nana and family (all of them including my aunts, uncles, cousins and in-laws) have been so good to me that I know I have come this far because of them. My employer, The American Heart Association, and my boss Marty and some of the other great friends and co-workers I have there have been so supportive and flexible through this ordeal. Being able to live my life and work full time has been a huge part of the progress I have made since this began as the best way to fight and win this battle is to continue to live my life and not let the cancer beat me. Thank you so much to everyone…I am so full of love and gratitude to you all that I still can't put it into words.

Tuesday, March 10, 2009

A little bump in the road...and some other stuff.

Sorry for such a long post but I have a lot to share today. I am starting radiation tomorrow morning and I have it everyday (Mon-Fri) until April 7th. I am all "marked up" and ready to go. I have marker, stickers and tattoos all over my chest and sides to help guide them. They actually tattoo little dots (that look like freckles) on your body for reference points, so they can assure they are hitting the same spot every day when I am there. I am anxious and excited to get started and I will post in the next few days about how it goes.

After a long streak of good news so far with this battle, Dr. Kotlove (my radiation oncologist) gave me some not-so-good news today after my mapping. He told me while examining my scans to pinpoint the exact spot on my 11th rib to radiate he found another spot. He contacted Dr. Butrynski (my oncologist in Boston) and discussed it with him before talking to me about it. This spot had actually shown up on a previous scan but it was dismissed as something else, but after further examination they agreed that it was most likely another metastasis. It's located on my L2 vertebrae, which is in my lower back. This spot was definitely not present on my October scans, but was there in January and there again in last weeks scans (and as I said was flagged but not determined to be cancerous at the time). It's about a quarter of the size of the spot in my T4 vertebrae so it's pretty small. This doesn’t change any of the plans and they aren't going to treat this with radiation yet because they feel that radiating three spots while I am on weekly chemo is too much. The spot is small enough where they are comfortable just monitoring it for now. This didn't upset me too much as I feel lucky that in five months this is the worst news I have received.

Dr. Kotlove spent a lot of time with me today showing me the pictures of all the lesions in my bones (which are now located in 4 spots; my T4 vertebrae, L2 vertebrae, sternum and 11th rib). He showed me pictures from October, January and March (so I could see how they have stayed the same) and showed me how a CT scan works. It was really cool, especially because I got to look at hundreds of pictures of my bones and organs. It was the first time I have actually seen pictures of the cancer in my bones and I was really happy that he spent the time to show me these. He didn’t show me pictures of the tumor in my heart, but I have seen those a few times.

I wanted to post a link to an article that caught my attention today. Articles like this really give me hope, as they showcase how amazing the medical field really is and how advanced treatment options are becoming. It seems like every month the treatment, medication and technology for treating cancer (and other diseases) gets more advanced. A few months ago my friend Andrea sent me an article about something called "autotransplant" surgery. It talked about the case of a guy who had heart cancer and because of the location of the tumors they actually removed his heart from his body, repaired it, and put it back in. This surgery is the same as transplant surgery but the heart that goes back in is the same heart that's taken out (instead of from a donor). I don't need this kind of surgery, but it's nice to know it's an option if it were to ever come to that. I have read cases of people with my type of cancer getting heart transplants, but because mine has metastasized I am not a candidate for that (probably because only 10% of people who need heart transplants actually get them, so they wouldn't give a heart to someone with metastatic cancer for obvious reasons). This article is about a seven year old girl who had a tumor in her abdomen that was intertwined throughout her organs and they performed an "autotransplant", removing most of her abdominal organs, removing the tumor and then putting them back. It's AMAZING and I pray she does well. A chaplain that we talked to while at Dana Farber in Boston told us that while we all hope for miracles, it's important to realize that the skills and abilities of the doctors that treat this kind of stuff is a god given miracle and I think she was absolutely right. Stories like this give everyone with incurable diseases hope that in the future they can be cured (or at least managed to the point where they are not terminal).
The article can be found here:

When thinking about stuff like this I realize how lucky I am to work for an organization like the American Heart Association. The mission of the AHA has always been important to me, but it's more personal now than ever before. I don't have heart disease, but because of the location of my tumor and the surgery I need I will certainly benefit from the amazing work the AHA has done. The first few days that I was going through this, when people at the hospital (doctors, nurses, etc) would ask me where I worked, they would do a double take when I said "the American Heart Association". I must have had 50 people mention how ironic it was that I worked for the AHA and got cancer in my heart. In the past few months whenever I get assigned to a new project, or see the work I have done come to fruition, I think about my situation and the millions of others that face the same types of things I face right now. And I think about all of those that the AHA has helped, and will help in the future. It's very rewarding to work for an organization like this. Besides working for the AHA, I also support them by walking and raising money for the Syracuse Heart Walk (this will be my sixth year). The walk is on 4/18 this year and if you are interested in walking or donating you can check out my personal webpage here: Let me know if you have any questions.

Sorry again for such a long post and thanks for all of the encouragement, emails and prayers. Shana and I talk every night about how lucky we are to be surrounded by such great people…our family, friends and coworkers are amazing. We take this battle day by day and so far we couldn't be happier with the results. We return to Boston at the end of April for more scans and a meeting with my oncologist and surgeon (I think I will wait until mid-August to get anxious about that!) and I am crossing my fingers that surgery could be in the near future (it's a good sign that they scheduled a meeting with the surgeon). I will post again in a few days about how the radiation is going. I hope everybody is well!

Tuesday, March 3, 2009

Good News Again!

Every six weeks since my diagnosis I have had follow-up scans to check the status of my disease. I had scans today in Syracuse and for some reason I was more anxious and nervous about it than usual. All my anxieties were put to rest when Dr. Scalzo opened the door and exclaimed "great news" before he even stepped in the room!

The scans I get every six weeks are to ensure that the cancer hasn’t spread, to check the tumor and ensure it isn't growing and to determine whether or not we are still on the right track. Today's scans showed no new lesions or tumors and showed that my tumor has shrunk more since the last set of scans. The current size is 3.9 x 3.4 cm (in October it was 8.4 x 5.2 cm) which means that the chemotherapy is still working to both stop the spread of the cancer and keep the tumor under control.

I am not sure why I was so anxious going into my scans today. I think it's a combination of the fact that I haven't been feeling well lately (chemo sickness, pain, etc), some new pains I have been getting (every strange feeling I get gets my mind wandering) and some new information/research I have received about my kind of cancer (which wasn't very elevating). I came across a study released in June 08 by the Cancer Society and the Mayo Clinic that is a study of every case of malignant primary cardiac tumor seen at the Mayo Clinic since 1975 (which is a whopping 34 cases). Reading it was very informative, but also not very uplifting (I've been aware of the survival rate all along and have never let it get to me, and don't plan to!). One thing that struck me though is the median survival time for cardiac tumors with metastasis (that's me). In this study (and many other's I have come across), it's five months. I will be at the five month mark in two weeks and after getting the good news I got today I am starting to feel comfortable saying that I am winning this battle. I know I have a long way to go, but I feel that today's results were a big milestone for me, especially because my disease hasn’t progressed (in fact it's regressed) in 20 weeks and these results cleared the way for me to begin radiation next week (which is another milestone I am excited about). My doctors rock.

The worst part about this is, to date, is waiting. It's like I am living my life six weeks at a time right now and can't think much further ahead than that. I have six more chemo treatments (I get this Friday off and start again on 3/13) and after that we go back to Boston to find out what's next. It's unsettling to know that I might be having surgery…but I might not. I think I will have it in May...but it might not be until July. It's hard to make plans and look into my future much more because of all the uncertainty around this. I don't know if I should register for school (I am three classes away from my M.S. degree) or if I should book a trip to Vegas this summer (and I have to plan a trip to Yankee Stadium!). I shouldn’t complain though, because if that's the worst part of what I am going through right now I guess you'd say I am doing pretty good.

I will post later this week when I know more about radiation and what's going on with that. To be honest, I haven't done too much research on it but I need to get on that. I go on Wednesday to be "mapped", which is another CT scan (or set of scans) that maps out where they are going to hit me with radiation starting next week. Thanks again to everyone for all you are doing for me. We have so much support and love and it never slows down and I absolutely believe that it's a huge part of where I am right now with this.