Heart Surgery in Houston

On March 1st, Lorrina and I traveled down to Houston to see Dr. Reardon at Houston Methodist Hospital in Texas. As many of you know, this was a very exciting and nerve racking appointment for us. We were excited, as strange as that sounds, because this appointment was a good sign the Dr. Reardon would be willing to perform surgery to go after the tumor behind my heart. However, we had no guarantee that was the case. I had a cardiac MRI that morning that definitely would make the case for doing the surgery or not. Right now there is not really another good option to treat this tumor. We are unable to radiate it further due to its location. I have failed almost every chemotherapy option available, and there is currently not an open clinical trial that makes sense to try. If Dr. Reardon would have said no, we would be left searching for a treatment option for a tumor that is already obstructing my heart and major blood vessels. Thankfully, Dr. Reardon is willing to perform the surgery and go after this tumor! We were incredibly relieved to say the least! We will be heading down later this month for surgery on March 29th. We are so grateful to my Oncologist at Roswell Park, Dr. Grand'Maison, who sent us to Dr. Reardon because she new there was a chance he could help us. If it were not for her, we may have never known this surgery was possible. There is not a surgeon near us that would be willing to do this surgery or is capable of doing this surgery that we are aware of.

Dr. Reardon is very hopeful this surgery will be successful, but there is always a chance that things look different when he opens me up and visualizes the tumor. If the tumor is invading the bottom part of my heart (the ventricles) or my esophagus, this would make things more difficult and possibly not removable. The MRI doesn't appear to show this, but it is always possible the scan is not 100% accurate. If the tumor is invading the top part of my heart (the atrium), this can actually be removed and replaced with artificial valves and transplanted tissue. Either way, we are grateful he is willing to take a shot at going after this tumor that right now, we don't have another option for.


Houston Methodist: Cardiac Autotransplant with Michael Reardon, MD from Houston Methodist on Vimeo.
This video is of Dr. Reardon explaining this type of surgery and why he started doing these type of procedures. He really is an incredible surgeon and it is very inspiring how he took on these cases to give patient's who have few options a chance.


If you aren't grossed out by surgery, you can watch a surgery similar to the one I will be having. I know it is not for everyone, but there are also a lot of nurses and students who have been reading this blog and I like to include as much educational stuff as I can. This patient has a different type of sarcoma than mine and her tumor has grown into the heart. Mine does not appear to have done this. However, the premise of the surgery is the same. Remove the heart to get to the target tumor.


In the meantime, all other treatment will be on hold. No more chemotherapy and proton therapy until after I recover from this surgery. Both of those treatments can put me at risk for infection or bleeding leading up to the surgery. The benefits of going after this tumor outweigh the risks of not treating the other tumors in my right lung right now. At some point, we will need to decided what the best option is to further attack those tumors and if removing my right lung is the best option for that as well, but right now we are happy the proton therapy has shrunk the large tumor and that hopefully it will remain stable enough to get us past this surgery.

I will be in Houston for about a month for this surgery, longer or shorter based on how I recover. We are planning for a two week hospital stay and about 1-2 weeks just staying in Houston for recovery and to be close by before flying home. I will have a lot of family there for the surgery which will be great and we have already made arrangements for a place to stay and travel. Being in Houston will be the biggest challenge for this surgery. Having had lung surgery in New York City was tough, but this is a much different trip. Obviously we can just jump in the car and drive down or back home whenever we want. The biggest challenge has been trying to plan for the recovery and keeping a family member down there with me until I get home, without knowing exactly when that will be. Thankfully, we have a great support system and so many people willing to come down and willing to watch our daughter. We would truly be lost without all of that support.

It has been difficult to wrap my head around this surgery because of all of the planning that has come with it in a relatively short period of time. I am not really scared of the surgery itself in regards to the pain and recovery. I have been through 7 lung surgeries now and those are supposed to be more painful and harder to recover from. The fact that my heart will be stopped and taken out of my body is admittedly a tough thing to wrap my head around. I have all the faith in the world in this doctor and know I don't have another choice, but knowing a heart lung machine will be keeping me alive and that my heart will be stopped is strange. The realty is, I don't have a choice. I will go into the surgery with all of the positive thought I possibly can, and be ready to fight and recover when I wake up. If my athletics career has taught me anything, it is you can't control everything. My coaches always told me you can't control the weather, you can't control the officials, you can control how you prepare and how you react to what happens. I have control over how I spend my time leading up to the surgery, so I will try to be in the best physical and mental shape I can be the day of the surgery. I have control of getting my family there to be with me, and I have control of how I work to recover from the surgery. What happens when I don't have control will happen, and I can't worry about that. That's how I am approaching this and hopefully we will come out with one less tumor!

Thanks as always for reading and following along. I appreciate all of the help, messages, and support from everyone! We are so grateful to all of you! I will update at least one more time prior to surgery.

Proton Therapy Progress, Chemo, and Possible New Adventure!

Hello everyone. A lot has been happening treatment wise since my last post. I will be starting my 3rd round of proton therapy on this particular tumor. We have been treating this large tumor in the right upper lobe of my lung since December with what is called quad shot proton therapy. Basically I go to New Jersey for this extremely precise type of radiation about every 4 weeks to get 4 treatments. I posted a whole blog about what proton therapy is previously if you are interested. So far, the tumor is responding well. The picture below shows the tumor volume in blue. This is the difference after 2 treatments. You can see this is and was a very large tumor. This was causing me all of those symptoms back in December when I was unable to get out of bed much. Today, my symptoms are much better and I can actually function through a whole day pretty normally. Being that compromised from this tumor was a first for me and honestly, very scary. It was debilitating not being able to do anything without coughing and being short of breath. I was tired all of the time. Thankfully we were able to get this treatment and find a way back.

This is not the only tumor I have. There are other smaller tumors along my right chest wall that cause some pain, but are not effecting organ function at this time. I also have a large tumor behind my heart. This is the trouble maker. We hit this tumor with proton therapy back in July and it did respond. However, because of it's location, we can't continue to radiate it. My esophagus was effected the first time and the risk of puncturing that along with my heart and the big blood vessels around it is to great. SO that leaves chemotherapy, surgery, and trials. I have failed every first, second, and third line chemo treatment available except one cocktail that we are trying now (Gemzar and docetaxel). This has not shown great results in synovial sarcomas but some cases have so we are adding it to try to both assist the proton therapy and control the tumor behind my heart. That tumor is very difficult because of it's location. It is behind my heart and pressing against my inferior vena cava which is the big vein that feed the heart from the lower body. This can cause a lot of problems as you could imagine. The big concern is my liver backing up from the impaired blood flow. They were considering placing a stent in the vein to keep it open, but that is not an option at this time. Instead I am on a low dose steroid that is helping keep the inflammation down which will alleviate some of the pressure from the tumor.

The good news is there is a surgeon in Houston, Texas that specializes in removing these types of tumors. He actually tends to see a lot of angiosarcomas which is a different disease pathology than mine. Angiosarcoma initially presents around the heart and can invade the heart tissue, making them almost un-treatable around the country. This particular surgeon has developed a technique to remove the heart in order to get to these tumors and then put the heart back in. Basically, he does a heart transplant with the patients own heart. I have no guarantee that he will operate on me but he has seen my case and is willing to meet with me to discuss the possibility. We don't have an appointment yet as we are going through all of the insurance approval stuff that goes along with seeing a surgeon in Texas. You can imagine that there are some hoops to jump through. While I feel fortunate enough to have insurance that will cover part of this, it is still mind boggling to me that someone in an insurance office will make the decision on weather or not they think I deserve to have this meeting with a doctor who could prolong my life simply because I live in a different state. If you truly think that our system currently allows decisions to be made between just patient and doctor, you are sorely mistaken. I also have some of the best insurance available thanks to my job, so I can not imagine what people who are not that fortunate must go through when these decisions need to be made. Just some food for thought. So hopefully we hear soon about our appointment so we can book our trip to Houston and see what happens.

For now, I will get round 3 of protons next week, followed by the next cycle of chemotherapy. Lorrina and Nalina will be joining me this time as Lorrina is off work. It will be nice to have the company and we will enjoy Somerset, NJ as much as we can for a few days! Our big mid winter vacation! We were trying to plan a few days to Florida to just get away that week, but our timing with treatment is never good. One day, we will sit on a beach sipping a drink, but it will have to wait for now.

I will keep you all posted on the next step. Thanks to everyone who continues to follow whats going on and for all the support, it means the world to us!

Happy New Year!

Happy New Year to everyone. I hope you all had a great holiday season and are starting 2018 off well! It has been a couple months since I let everyone know what has been going on. Honestly, I just have not felt like writing about it. It has been a very hard couple of months making treatment decisions and traveling a lot to New York and New Jersey. The past few months have been without a doubt the the hardest I have faced through this journey.

The last time I updated, we were trying a chemo I have had several times before, ifosfamide. The hope was that doing this after proton therapy would help further shrink the tumor that was near my heart. The plan was to do 2 rounds and then see what the scan looked like. When we did the scan, there was some good news regarding the tumor near my heart. The proton therapy appeared to have killed a large portion of the tumor and it was much smaller. The bad news was there was a new very large mass in my right lung. This mass was about 12cm and taking up a lot of room. It was clear that the ifosfamide was probably not working. After this we attempted another chemotherapy which was given outpatient and I was referred back to the Proton Therapy team at MSK in New York. All of this happened almost simultaneously and at this time I started to become very sick. I struggled with side effects from the new chemotherapy they had given me and we had to travel to NYC that week. Needless to say it was a very difficult trip. We made it through like we always do. With the help of my wife and sister in law Sarah, we made it to NY. We stayed with our close friends in Queens who are always willing to open their house to us at a moments notice. After meeting with the team at MSK, they were confident that Proton Therapy would be beneficial and we would start ASAP. We headed to NJ that weekend to have the planning CT scan. The plan was to do what is called quad shock. High dose treatment twice a day for two days and then rest for a few weeks and treat again. I finished the first round of treatment in early December. I was extremely symptomatic at this point. I was not getting out of bed much because it was too hard to breath. My pain had become much worse and I was put on stronger pain medication then what I was already on, and I had a terrible cough that never stopped. Never in the 10 years that I have had this disease had I felt this symptomatic. It came on so suddenly and was very hard for me to deal with. I did not want to get out of bed and my appetite was almost non existent.

After coming home from NJ, my condition stayed the same for almost 3 weeks. Finally this past week, I have been feeling a bit better. My breathing is much better, although I have very little stamina and get short of breath easily, I can at least get out of bed and do some things around the house. My pain is under control for the most part and my cough is not as frequent. I am hoping these are all good signs about the treatment, but time will tell.

I went to NJ last week to have my second planning scan. Now we just wait to hear for a date to head down for the second round of treatment which should be within two weeks. Depending on how well this works and what the rest of my disease looks like, we are considering surgical options after proton therapy. The hope is that we can get the disease under control enough to be able to take a majority of it out surgically with less risk. We are also always looking at other clinical trials around the country that may be effective.

I will do my best to update periodically. Thank you all who follow along and constantly send you love and support. Happy New Year everyone!