An Overdue Update. Fourth and Final Round!

Hello Team Madonia! I have not updated since before round 3 so let me catch you up on some treatment related stuff first. Prior to round 3 I had a ct scan to look at my lungs to see how everything looked following the surgery in January. Everything looked good but I will be doing another scan at the end of this month just to make sure. There is a lot of scar tissue around the surgical site which makes it hard to see things on the scan so we will watch it closely to make sure nothing changes that would suggest a new tumor, but so far everything looks great. Round 3 of chemo was very tough. I felt goo the first 2 days but the chemo really started to take a toll on me after that. My chemo was actually stopped late Thursday night due to some tremors and twitching in my left leg. One of the big side effects of ifosfamide is neurotoxicity which can present in different ways. The docs felt this was a sign of that so they just stopped the infusion and I went home a day early. I was very tired and very sick. The good thing was that I did not have to work after this round thanks to some very generous coworkers that donated some PTO time so that I could stay home before this last round. This has really made a difference. Until now, I didn't realize how tired I actually was from working in between cycles. For the first time, I actually feel recovered going into this round of chemo. 

Today starts round 4, the last one! I am thrilled to get this one over with and get back to normal after this! The dose of chemo will be slightly lower this time due to the neurotoxicity during the last round. Hopefully I avoid any complications and recover quickly! 

I spoke with Steve the other night and he told me that we sold more t-shirts this time than we did the first round! In total we have sold about 260 shirts! That is incredible! I want to also remind everyone that all the money raised is going directly to the research fund a Roswell Park. I want to make that clear so people know where the money is going. When money is donated to larger groups like the American Cancer Society or some of the larger "charities" a lot of that money doesn't go directly to research or even patient support programs. I believe that keeping the money here at Roswell, where research that is done right on our campus needs funding, is the best place to donate these funds. Here is the link to the donation page if you would like to read about where this money is going https://www.roswellpark.org/giving 

 I am also looking forward to the Absolute Performance meet this Saturday that will also benefit Team Madonia. My friends at Absolute Performance will be putting on this meet and I hope that everyone who comes out to compete puts up some good numbers and has fun! I am hoping to feel well enough to come to the meet but I will be getting out of chemo that morning. I will do my best to show up, even if I have to carry my puke bucket with me! 

The last thing I wanted to say this week was a big thank you to anyone who is reading this that nominated me for the Daisy Award. I received the Daisy Award last week after being nominated by several of my patients and their families. This was the most touching honor I have ever received. I was very shocked and surprised to have won the award. It has been a great pleasure to take care of my patients and their families and I have done nothing but treat them the way I want to be treated when I am lying in that hospital bed. Helping them navigate their way through this terrible disease is my way of fighting cancer. For my nursing friends who want to learn more about the award and how they can get their hospital to enroll in the foundation if they are not already, visit http://daisyfoundation.org/. Thank you to all the nurses and administrators who organized the ceremony as well, especially Pam, for making sure my family was there!

Challenges are what make life interesting and overcoming them is what makes life meaningful. –Joshua J. Marine

We're halfway there!

Hello Team Madonia! I am a week out of my last round of chemo and wanted to give a little update and write about a couple of things. First, let me give a little update about how treatment is going. Overall, I feel pretty good. My appetite is doing OK, although I did struggle to finish a burger last week which was borderline embarrassing! The biggest thing I am struggling with right now continues to be fatigue. I have no energy to do anything other than to drag myself to work. Last week I did force myself to do a 45 minute lifting session; I paid for this. Although it did feel good to lift, I was extremely tired and achy the next 3 days. I have been doing my best to walk the dog and stretch since then and will be attempting to lift again this week, but very lightly. This is very hard for me as I have always been a very physically active person and until recently was in the gym at least 4 days a week. I know this is not permanent, and my energy will come back, but the short way of explaining it is that it just really sucks!

This morning I had my blood-work drawn and a CT scan. This is the first CT scan since my surgery so although it should be a completely clear scan, it is always nerve racking waiting for the results. I will get those results on Thursday. The only thing that could delay the next round is my liver. After round 1 and 2 my liver enzymes have been very elevated. This is basically caused by the chemotherapy causing my liver to work much harder. You see, the chemotherapy that I am receiving is a nitrogen mustard, as in mustard gas, as in the crap that they used to poison people with in chemical warfare! Now while this is not the exact same thing, it is still, in essence a poison, and when you pump that crap through a human, their organs tend to get pretty pissed off! So, if as long as my liver enzymes have normalized, we are a go for round 3 next Monday. The second round of chemo was much harder than the first, so I am expecting that the third will follow suit. More nausea, more fatigue, and worst of all, less good food!

I also wanted to give a shout out to my cousin-in-law Emily, who has no doubt been a huge supporter doing everything from rockin Team Madonia gear at her Cross Fit meets to cooking my wife and I some healthy dinners. She is a great example of how family gets you through the hardest times in your life. And  this also reminds me of one of my favorite quotes from Lance Armstrong (no steroid comments! lol):

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.”

 

Another shout out to Lisa Lovullo and Kristen Downey for their support. They didn't like that there wasn't a baby line in the Team Madonia store, so they made their own OneZ! 

Again, thank you to everyone for the support, I can't put into words how much it has helped us through all of this. I am still working on having some other patient's and family members share their stories with us. I have my first person lined up, just have to get everything on paper. I am really excited to share some of their stories as I think it will really give an honest view of a cancer diagnosis from all different age groups. I also really want to post more from the hospital this time, and maybe even do some videos. Until next time, keep posting those shirts to Facebook, Instagram and as my mom calls it, Tweeter!

Round 2

Hey Team Madonia! Sorry for the lack of posts, it has been very hard for me to do much of anything these past two weeks. I have been extremely tired during my two weeks of rest from chemo. I was able to make it to work 6 days these past 2 weeks which was a full schedule of 12 hour shifts, so I was glad that I was able to do that. However that along with the fatigue from the chemo and a couple other hiccups didn't leave me much energy for anything else. Other than the fatigue, the side effects from chemo were not too bad. My blood counts were pretty stable and the nausea subsided a few days after I was discharged. I had a couple days of really bad bone pain from my nuelasta shot which helps boost my white blood cell count. I have had this shot several times before and never had such severe pain from it. I also got an abscess in my gums from a previous root canal I had done. This seems to happen every time I get chemo so unfortunately there may be some extra dental work in my near future, yay! 

I have noticed that chemo has been much harder on me this time around. When I was 20 years old doing chemo, I still had energy to get to the gym and train through everything. Now, at the ripe old age of 26, I don't even want to get out of bed! I think a lot plays into this, including working 6 night shifts and having a house to take care of now. But I also think that I may have just been a little crazier 6 years ago! During this next cycle I will do my best to train at least 3 day a week no matter how light I have to keep things. I know this will give me more energy in, I just have to fight through the first few days.

I am working on having some different patients and parents of patients post on the blog to tell their story. I have the privilege of seeing some amazing parents and kids battle this terrifying disease and I really would like to share some of their stories! Not only do those people help motivate me through my fight, I think that they really help put life in perspective and make you appreciate the good things in life that much more. I have been told that the grey t shirts are selling like crazy so a big thank you to everyone who has purchased them! I love seeing the pics so keep them coming! 

Round 1 in the Books!

Hey Team Madonia! Round 1 of chemo wrapped up on Saturday. I was very surprised at how well I have tolerated it so far. I am very nauseous at times and a bit tired, but I thought this would be far worse. I don't want to be too optimistic as this next week could be very hard as my counts may drop (my blood counts). This will leave me more susceptible to infections. The effects of chemotherapy tend to be the worst about 7-10 days after completion. This is called the nadir, or low point. Although I may feel a little better, the chemo is still having different effects on my body. The hardest part of chemo is trying to stay occupied while feeling very sick for 6 days trapped in a hospital room. Everything you try to do makes you sicker. Eating, well that's out by about day 2. Video games = vomit. TV, lets face it, day time TV will make you sick even if you are not on chemo! Long story short, I am very glad to be home with my wife and puppy and out of the hospital room!

I will have two weeks rest until the next round of chemo. I will attempt to work a few days in between as long as I feel well enough.  Still gotta bring home the bacon!

A big thank you to everyone who called, texted, visited, wrote on my wall, posted Team Madonia pics, emailed, smoke signaled, telegraphed, and snail mailed! You guys are awesome and you have no idea how comforting it is to know I have you all in my corner.

A lot of you have been asking about ordering more shirts and I believe a new order will be coming very soon so just watch Facebook for the announcement.

The cutest Team Madonia Member, my niece Scarlett!

                                          

Team Madonia Going Strong

What's up Team Madonia! Sorry for the lack of updates, I have been very busy getting back to work after surgery and trying to train this new puppy my wife and I just got, aka she is always napping on me and I can't type while she does! A lot has happened since my last post so let me fill you all in.


Surgery Results

Surgery went very well. This was the third time I had this surgery on my lung and this was by far the best recovery experience I have had. I guess practice really does make perfect! The surgeon was able to locate and remove a very small tumor in my lung. The pathology was consistent with synovial sarcoma, meaning that this tumor was another metastasis from my original tumor in my foot. The recovery has been great, I was able to leave the hospital the next day with very minimal pain. I was also able to return to work 12 days after surgery!



Chemotherapy

Before surgery my doctor and I were unsure if I would try chemotherapy following surgery. In my meeting with him last week, we decided to go forward with chemotherapy to try and make sure that I remain cancer free for good. This was a very hard decision to make for many reasons. Doing chemotherapy right now does not guarantee me anything, other than a whole lot of bad side effects. At this point, I have no measurable cancer in my body. After every surgery, my tumors have all been succefully removed with clear margins (no cancer cells in the surrounding healthy tissue). Unfortunately they have also come back each time as well. So the chemotherapy will be used to try to kill any cells that are undetectable and may be causing my relapses in my lungs. Unfortunately there is no good research that says that this does or does not work for people with metastasized synovial sarcoma. In theory, it is a good idea but is very hard to decide if the possible benefits outweigh the risks. The chemotherapy I will be doing is high dose ifosfamide, which has a wide variety of acute and chronic side effects. So why did I decide to go forward? Well, I am young and strong still, so I feel now is the time to hit this hard while my body can handle it. So, although I know this will be hell, I can only hope that this will give me the best chance of beating this disease once and for all. I am also quite tired of having pieces of my lung cut out, I think three times is plenty!


Team Madonia and Strength Fights Cancer

If you ordered shirts they should be arriving shortly. They are absolutely awesome! I attended the Rock and Roll Throwers Meet in Lancaster, NY this past weekend and I was overwhelmed by the number of throwers that were sporting their shirts in support of Team Madonia. Not only were a bunch of Buffalo native throwers supporting Team Madonia, but the RFA throwers and their families were all sporting their own custom RFA Track and Field Team Madonia shirts! I was very proud to  see my name and the Team Madonia logo being worn by so many great people in the track and field community.


I also want to thank Nate Harvey for recognizing me in the newly renovated University at Buffalo weight room. Nate has been a great coach and friend of mine since he started coaching at UB and he knows how much the weightroom and athletics has helped get me through my battle with cancer. For him to put my picture up in that weightroom was more of an honor then I can explain in words. To be on that wall inspiring his athletes to work hard everyday and chase their goals feels amazing and I am so appreciative to be a part of that.

I hope that everyone will post a picture to the Facebook page of them in their shirts! It would be awesome to have an album of all our supporters sporting their awesome shirts! I know Steve plans on opening orders up again soon so if you haven't gotten one yet you will get a chance to snag one in the near future. Also, I will let Steve do the announcement, but he did tell me how much money we have raised for Roswell Park and I really can't believe it. That money will go to Roswell to help support research to cure this terrible disease.


Help the Fight


I also wanted to give a reminder that there are plenty of ways to help in the fight against cancer. I can tell you as an oncology nurse that one of the most helpful things you can do is to go donate blood and platelets! I can not tell you how important this is! Every morning on my 9 bed unit alone, we hang multiple bags of blood and platelets, and at Roswell Park, almost all that blood is donated right at Roswell. We run into shortages all the time so if you really want to do something to directly benefit the care of those battling cancer, please go donate! By donating you are literally helping your neighbors who are fighting this disease stay alive and continue their fight. Hit up the website below if you have questions too.
https://www.roswellpark.org/donor-center

Time for Surgery...Again.

I will be having my surgery tomorrow morning. I am scheduled for 11 AM but will be having a needle localization done at 8 AM. A needle localization is when they mark my tumor with a wire under CT guidance. This is probably my least favorite part of this surgery. It is not very painful but it makes me very anxious. I will be awake for this part and all I can tell you is it is very strange watching someone put a needle and wire into your lung while you are wide awake! This is very important though because it marks the tumor so that it is easier for the surgeon to find it.

The surgery I will be having is called a VATS (Video Assisted Thoracoscopy). This will be the third time I have had this surgery, all of which have been on my right lung. Basically the surgeon makes three incisions in the side of my chest that he can put cameras and surgical tools through those "port holes." This is much better for me then a thoracotomy, which would involve making one big incision between my ribs. After they make the three incisions, my lung will collapse, the surgeon will find the tumor which was marked with a wire and then cut out the tumor and the surrounding tissue. They will look at the tissue under a microscope on site to make sure they have "cleared my margins" which is fancy talk for saying they removed all the cancer from the surrounding healthy lung tissue. That is done by a pathologist, who is a separate doctor in a lab in a completely different building. Contrary to what you see on Grey's Anatomy and House, it is not just one doctor who does everything! The second worst part about the surgery is I will have a chest tube for a day or two. This helps re-inflate my lung and drain fluid and air from the space around my lung. It is extremely uncomfortable!

Having done this twice before, I know what to expect. However, each surgery I have seems to be a little tougher. This will be my 7th surgery and the 6th one related to my cancer. Sadly this doesn't even compare to other people out there fighting this disease. Cancer sucks my friends, it really sucks! With that said, my spirits are still really high. I am very confident the surgery will go well, and I am looking forward to rehabbing myself back into shape and coming back strong. I can't wait to write about my recovery and show you some pics of that process. I have gotten pretty good at rehabbing due to the plethora of times I have had to do it! I will find out what the next step is later this month. I have discussed the option of doing chemotherapy after this surgery with my doctor, but no decisions have been made yet.

I hope everyone had a great New Year. 2013 was quite the roller coaster. I have learned that every year is filled with it's own share of stresses, both good and bad. The fact is that if your stressed, you are alive, and that's a good thing! So bring it on 2014! I welcome all you have to throw at me, and if cancer wants to show it's ugly face again this year, Team Madonia will just have to kick it's ass again!

 I will do my best to write updates during my recovery. I should be in the hospital for 2-3 days. Until then, thank you for all the support and thank you for the donations and support of Roswell Park from Team Madonia. I hope everyone posts some pictures of themselves to Facebook in their Team Madonia shirts when they come in!

        I watched this clip hundreds of times during track season. 

   Still applies to this battle. Rocky gets me every time!

Enjoying the Good Stuff in Life.

Well, I’m married! The wedding went off without a hitch too. Not too bad considering we planned it in 17 days and it was 4 days before Christmas.  After 7 years we are now officially Mr. and Mrs. Madonia.  A lot of people keep asking me what took so long? Hell, my wife (that is still weird to say) has also asked that question, even though she knows the answer. And the answer is that we were both in school for almost all of that time we have known each other, Lorrina for 6 years and me for 7! That on top of my track and field shenanigans, Lorrina’s several jobs, 3 bouts of cancer, and losing my father in the middle of an accelerated nursing program; we had a few excuses! Despite the long wait, I couldn’t be happier. I have married the strongest and most determined woman I have ever met. She has been by my side through hell and back and has done it all with a smile. When you are battling cancer, or any type of disease or illness,  it is those closest to you that hurt the most. They are burdened with not only the emotional pain of watching their loved one be sick, but also the emotional and physical burden of taking care of them.  Lorrina has shouldered all of that responsibility and has done it with more grace than should be humanly possible, and that is just one of the many reasons I know I have found a soul mate for life.

With Christmas coming tomorrow, I want to remind everyone to not take this time of year for granted. I know you hear this from everyone and it is cliché’, but it is true. I am not a religious person, but I have always celebrated Christmas. Christmas reminds me of great times with my family. It reminds me of my Dad playing Santa on Christmas morning with a stocking on his head. It reminds me of getting extremely bloated from eating way more than a human should be able to tolerate! It reminds me of the good times I had with family members I see far too little of today. And now it reminds me of my engagement and marriage to my beautiful wife. So no matter what holiday you celebrate or for what reason you celebrate it, remember that there will be a handful of kids staying the night at my hospital tonight. Kids that can’t go home for Christmas and spend it with their big, annoying, extended family that we often complain so much about this time of year. I also can’t help but think of the many families that will have newly empty chairs at their Christmas dinner this year. I have had the unfortunate task of caring of several patients that lost their battle with cancer this year.  I can’t help but think of their families this week.  With that said, please enjoy the holidays. Enjoy all the stress they bring and all the good memories they make and always remember that we are all fortunate in some way, no matter what struggles we are facing. 

                                                                Dad at Christmas dinner.

 If I haven’t thanked you personally over the past few days, please accept my apology, it has been a little crazy and the support Lorrina and I have gotten for the wedding and for the Team Madonia page has been nothing short of amazing. I am so grateful for everything everyone has done for us, we truly have the best support system anyone could ask for!  I also can’t believe how many people have bought shirts to help support Roswell Park Cancer Institute. Please remember that the money raised goes straight to Roswell Park and the search for cures to this awful disease.