Day by Day

Day by Day

Friday, December 20, 2013

Round 4... Fight!

This morning when I woke up, I logged on to Facebook to find that a long time teammate and friend, Steve Maciejewski, did something amazing. He put together a fundraising initiative complete with a webpage, Facebook page, and T-shirt, all to raise awareness of my disease and my battle against cancer. Every time I battle this disease, people step up to do wonderful things. From the minute I was first diagnosed to now, I continue to be amazed at how selfless people can be. Working on a pediatric floor at Roswell Park Cancer Institute gives me the opportunity to see these selfless acts almost everyday, but I also see people who go through this same battle; much harder fights then my own, with almost no support. I know how lucky I am to have the support of some truly great people and I am forever thankful for that!

With that said, I want to keep a blog to not only keep everyone updated on my status, but also to give you a look inside the life of a patient. I feel that I can provide a rather unique perspective considering I am also an oncology nurse. I have never been shy about sharing my story. Hell, I will whip my shoe off to show you my foot in a heart beat!

                                                                 See, I told ya!

I guess I should give a brief overview of how this all started. I was diagnosed with synovial sarcoma in April of 2008, the end of my Junior year at UB. I had a large bump on my foot for over a year before I was diagnosed. Turned out I had a baseball size tumor weaving it's way through my foot. I had most of the tumor removed before we knew what it was. A podiatrist ordered an MRI on it and saw the tumor and then surgically removed it. At that time we had no idea what it was. Long story short this led to 3 round of inpatient chemo, another surgery to remove the rest of the tumor and take out tissue that was effected by the tumor (bones, muscles, blood vessels, and other connective tissue), and 8 weeks of radiation therapy. I was cancer free until April of 2012, almost 5 years exactly when I had my first relapse in my right lung. After that was removed, I relapsed in December of 2012 in the same lung. This time we did surgery followed by three more rounds of chemotherapy. These chemotherapy drugs are the same drugs I had in 2005 and are the first line agents used for my cancer. The problem is the one of these drugs, doxarubicin aka adriamycin, can throw me into heart failure, and for that reason has a life time limited dose. This means I can never have that drug again no matter what, and it is one of the best drugs there is to treat my cancer. Well obviously, since I have now relapsed a third time, that chemo did not work so well anyways, at least for me it didn't.

I will be having my 3rd lung surgery on January 3rd. The surgery I am having is called a VATS wedge resection. VATS stands for video assisted thoracoscopy. It is a fancy way of saying they will deflate my lung, cut three port holes into my ribs so they can stick a camera and tools in there to cut out some lung. Just like arts and crafts! This surgery is to remove a small tumor that is currently in the upper lobe of my right lung. This is the third such tumor in myOctoberng. These tumors are metastasis from the primary tumor that was in my left foot. Sarcomas like to travel, and the first place they like to hang out is in the lungs (lucky me)! This will be my 6th cancer related surgery, but yes I am still nervous! I think the more surgeries I have the more nervous I become. That whole myth that you get used to the pain is bullshit! You just start to think about it more and more each time and it can actually get worse (Reference: 6 surgeries and RN experience haha). After surgery, I may also be doing chemotherapy again as an adjuvant therapy to the surgery. This is still up in the air because there is no evidence that shows chemotherapy as an adjuvant therapy at this point increases survival rates, so this decision will be made after the surgery. My feeling is if it has the chance to help, I am all for it.

                                                                       High as a kite!

I would also like to say that this weekend, my fiance and I will be having a small ceremony to get married before we go through all of this together one more time. We were originally scheduled to get married next Oct., and we still plan to have that happen to renew our vows and throw a big party as long as I am healthy. However, Lorrina and I feel that it is best for us to be married this time around. She has been by my side for 8 years, through all of this, and I could not have made it without her! She along with the support from our families and friends have been what has got me through some of the hardest times. You can't let cancer stand in the way of your life, you just have to keep going and smash right through it!

I will be posting as much as possible. I have a lot of ideas about sharing parts of my story, but stories of people I have met along the way as well. Thank you all again for the support!

                                                               Gonna put a ring on it!


  1. Good luck Jake and I hope your wedding day is wonderful :) TEAM MADONIA!

  2. So proud of you my cousin! Just plain inspiring! We love you so much and you and Lorrina are in our thoughts and prayers! Many blessings as you both embark on married life! True love can heal many things! Keep Stong! #Team Madonia