Not Bad News

I was scheduled to have my appointment on Black Friday, but I had to cancel it. On my way up to Pennsylvania, I got in a car accident. I was one of two people rear ended by the same person. It was not a chain collision, just a crazy person paying more attention to the dog on her lap than the road. At least no one was injured and her insurance is going to cover all of the repairs and everything, but it ruined the holiday and plans for the appointment. Also, I just purchased the car this summer, and it was just under 2000 miles. I unfortunately had to stay in Richmond by myself this Thanksgiving.

So onto what you came on here for. I had my appointment on December 1st, and the results are both good and uncertain. There are no new nodules anywhere, but the nodule from the last scan grew slightly. It grew from 5.7x5mm to 6.8x6mm. It is in the exact same spot as the one that was removed. In fact, the radiology report compares it to the nodule found in January, as if it's the same one. My oncologist and surgeon are still both leaning towards it being nothing to worry about, but want me to get rescanned in 8 weeks to be sure. We were hoping for shrinkage or no change. Shrinkage would have eliminated the possibility of another recurrence. It would likely be a recurrence if it had grown to 8 or 9mm. I fit neither or those cases so I'm still in the waiting game, but no bad news here.

Another thing that's new is that I'm seeking out a second opinion. I wanted to get one this summer after recurring, but I didn't have much time. I'm seeking out a second opinion because of a few reasons. There is no standard second line therapy for Ewing's Sarcoma. There are many different combinations of chemo and treatment options that doctors use for a recurrence, so another doctor could suggest a very different approach than what I'm doing now. And that leads to my second reason.

I had doubts about not having chemo when I recurred, but I mostly got onboard with it. I have read about many others battling this disease and I can't remember someone not having chemo after a recurrence. I suppressed those doubts, but they are back after having this nodule come up.

My oncologist hasn't really seen anything like this before. Both him and my thoracic surgeon describe my case as very "weird". Weird is not what I like to hear, especially from doctors who have seen so much in their careers.

I'm getting a second opinion at the Cleveland Clinic. They have a really good oncologist for Ewing's Sarcoma recurrences, and he does Skype calls, so it works out perfect for me. I'm in the process of getting the logistics finalized. In fact, I'll be picking up my medical images this Thursday on my way back home for the holidays. I'm hoping to have the call in the next 2-3 weeks. I plan on discussing everything about my case from the beginning to now, but I will focus on what has happened since the recurrence. I'm wondering about his opinion on chemotherapy, and whether it should be treated more aggressively right now. This doctor was suggested to me by a few comments in my last post, and the facebook group that I joined for recurrences. Thanks for the suggestion!

I trust my doctor, but I just need reassurance. When I was first treated I received chemotherapy to reduce the size of the tumor in my arm for surgery, but mostly to kill the micrometastases that are present in mostly everyone's case of the disease. In other words it wasn't the tumor in my arm that would kill me, it was the cancer cells that were too small to pick up on the scans. Why is it any different now? Don't I need chemotherapy to kill potentially other spots that have not showed up on the limited modern day imaging tests? I asked about this at the last appointment, and he understands my logic, but not doing chemotherapy is the most reasonable option at this point in his opinion. He believes chemotherapy could be an unnecessary risk to take.

My next update will be after I have the second opinion. I wish you all a Merry Christmas.

It's Back

I've been keeping some very bad news from you. I have been quiet because I didn't want to put anything on here until I knew all of the details myself. I had all of the info when I wrote my last post, but the bad news would have erased all of the good news I had to write about. This one will be long, maybe my longest, so be prepared.

Well, with that out of the way, here are the details...

June 30th, I had an appointment with my oncologist for my 3 year scans. As you know, I always have my scan the day of the test. Thus, my oncologist doesn't have a final report at appointment time; sometimes a preliminary report, but not always. As usual, he looks over the scan himself, and gives me the good news that it's all clear. This time was no different. Afterwards, we made a stop at Ikea on the way back home. I bought a ton of furniture for my apartment. Everything was going great. We had a Fourth of July/College Graduation party going on the next day. 

The next day, at around 9 in the morning I received a call from Philadelphia. It was my oncologist. My heart sunk, I knew what he was about to tell me. He tells me that the radiologist found a 5mm nodule in my right lower lobe in my lung, and upon further review it was 3mm back in January. They just missed it then. Complete panic set in. My family and I were so devastated. I would say the lowest point of this entire journey so far. A call from your oncologist on a Saturday morning is never a good call. At this point there isn't much of a plan. Probably surgery, but he needed to wait for the tumor board meeting they have every other week to discuss a plan of action.

I received a call 11 days later with the plan. An appointment with a Thoracic surgeon was set up for me on July 26th. Ewing's Sarcoma is one of the most aggressive type of cancer you could have. In 6 months a 3mm tumor would have typically grown to a much larger size than 5mm. So I was given a long shot of a chance that it maybe wasn't a recurrence. Maybe a different type of cancer or a benign nodule. The only way to know for sure is by removing it, and running tests on it.

My appointment with the thoracic surgeon went well. I really liked him. He gave me the choice of waiting 6 months to get it removed or going for it now. He warned me that it is very small and waiting longer could make the surgery a lot easier. Also, sometimes when one pops up, more come up months after getting the first one removed. Waiting could possibly avoid having multiple surgeries. Given that I hate having cancer in my body, and I start my job mid September, the choice was pretty obvious. Taking time off to have surgery just a few months on the job would not look good. I was suggested to try a clinical trial to help make the nodule easier to find. You could read about it here. I accepted it. It was an infusion I received the day before the surgery. The drug binds to cancer cells. The drug lights up the cancer tissue which is able to be seen with special equipment. This makes the job easier for the surgeon, and also will show any spots that weren't picked up by the imaging tests. Thankfully he made room for me to have my surgery on August 8th. He was booked for the month, but he didn't want me to have to push my move out and basically my next big adventure away.

On August 7th I had my infusion. I only had one bad side effect which was a stinging pain in the arm of the infusion. I found that whenever I moved my arm it hurt a lot more, so I just kept as still as possible for the 90 minute infusion to reduce that possibility. Some patients had to stop the infusion because the pain was so severe. The infusion itself was green in color, which is to be honest, played out for a clinical trial.

The next day I had my surgery. The only thing that was different from previous surgeries was the epidural. I had one to block the pain in my chest because of all of the nerves in there. I would be in tremendous pain without it while recovering in the hospital. The surgery itself was less than two hours and minimally invasive which reduced my recovery time from months to weeks. I had a right lower lobe wedge resection. The tissue removed measured 6.2 x 6.1 x 3.5 cm. My lung capacity dropped less than 1%. I have three new scars now.

I stayed two nights at the hospital. My surgeon wanted me to stay another night, but I wanted out. I didn't really feel any pain in the hospital. I was sitting up in the bed, and taking walks in the hallway. I probably should have stayed because once the epidural wore off I was in a lot of pain. I took the painkillers for a few days, and then just started taking Tylenol for a few weeks.

On August 23rd I had appointments with my oncologist and surgeon. The pathology result came back as expected; Ewing's Sarcoma. I had a lot of questions to ask my oncologist. I'll highlight a few of these below.

Q: Will chemotherapy help me?
A: The team discussed it and is conflicted on whether it will help me or not. Given the circumstances of how it recurred, the more conservative option might be the best bet for now.

Q: Should I have other scans to make sure it's not anywhere else?  
A: They are confident that this is all. Having something like a PET scan wouldn't have found the one in my lungs anyway. If it's in other bones, I would have symptoms.

Q: How did it come back? Was the start of this nodule there all along or did this come into being in the last year or so?
A: This was there all along. The chemotherapy put it into a dormant stage, but did not completely kill it.

Q: What are my chances of beating this now?
A: Around 50%. According to my oncologist, I'm still in the "can be cured" pile. Most recurrences are not like this. They happen shortly after finishing chemotherapy, or progress during chemotherapy, and grow quicker. For most people the chance of cure after recurring requires a miracle. A single, small, slower growing nodule coming back around 3 years after hits most of the positive prognostic indicators for a recurrence. A 50% chance of beating this sounds bad, but in the context of a Ewing's sarcoma recurrence, this is the best I could hope for.

In early October I had my 3 month scans. I had them down here in Virginia, and mailed them on a disk up to my doctor. Now there is more uncertainty. A 6 mm nodule showed up in the same spot as the last one. My oncologist and surgeon discussed this, and believe it is some artifact from the surgery, like infection for example. It is concerning though, so my next scan will be at the end of November. If it is sarcoma again, I will be looking at radiation or a combination of chemotherapy and surgery. I hope it's nothing, because my survival odds would drop drastically.

So, how do I feel about this? This hurts me on so many levels. It just seems like there is no end in sight. I had 3 more scans left and I was going to be at the five year mark. I had all of that chemotherapy, and went through multiple surgeries only to now be worse off than when I was initially diagnosed. Now I have to start over after just getting over 3 years of clean scans. My five year date has now been pushed to 2022. That'll be nine years from the start of chemotherapy. Going through college I just put my head down and worked as hard as I could to create a great future for myself. I wanted more than anything to move away and start my new life with cancer behind me. And at the last moment, just one month before I move out and start my first job; I'm having surgery to remove a sarcoma nodule from my lungs. Now, I've been working for a little over a month. I love my job. I love where I live right now. I was just starting to get over what happened this summer, and then I get more uncertainty with my last scan. I feel like everything I worked so hard for, is slipping away from me.

Ok that was a lot of info. Here's a quick rundown of what happened and where I am now:

• First evidence of the cancer recurring was January, but was only found on retrospective examination.
• One nodule was found in my right lower lobe of lung.
• Grew slowly for Ewing's. (3mm - 5mm in 6 months)
• Successfully removed and no other nodules were found during surgery.
• Doctors conflicted over giving me chemotherapy.
• Survival odds dropped from 85% to 50%.
• 6mm nodule on most recent scan in surgical area. 
• Believed to be artifact of surgery, but reduced scan interval to 6 weeks for next checkup.

My next update will be early December. Hopefully it will be good news. Keep me, and all other people battling this horrible disease in your prayers. Also, have a great Thanksgiving.

Graduated and Moving Out

Well, its been a year since my last update.  Here's what's happened since then...

College

I finished up my last year of college. I graduated with a degree in Computer Science and a minor in Mathematics. I finished Magna Cum Laude in the College of Engineering (Top 6% of class). I'm very proud of myself. Graduating college was a very distant goal four years ago when I was being pumped with chemotherapy. I even finished with better grades than before cancer. This is because I became even more driven after going through cancer. Also, after going through my treatments and returning to school, my studies became an important outlet for me to escape or at least not think about what had happened. My obsessiveness with my studies definitely helped my grades too. Moving out to Penn State my junior year was the best thing to happen to me psychologically since being diagnosed. My mood and energy improved a lot. Graduating college means so much more to me than just receiving a diploma. To me it means that despite the major slowdown in my life, I still made and can continue to make forward progress, passing major life milestones one at a time. So to sum it up, college has played a very important role in my life these past few years. I will miss it. There is no place like Penn State. We Are!

Summer

This summer was mostly about getting ready for my move out. For fun, we went to a few baseball games. The weather wasn't the best so there wasn't much pool time, by far the least since we have had a pool. 

This was the first year I really felt ready to lift weights since cancer. I stayed dedicated to lifting all summer and made great improvement. I had to make adjustments to the workout I used to do because of pain in my arm. For example, exercises above the shoulder, like military press, and incline bench press don't work for me due to pain. That metal on muscle grinding pain isn't tolerable. I can still work those muscles, but I just have to perform alternate exercises. Besides that I am able to perform mostly everything else. When I started I was only able to bench 65 lbs 8 times and couldn't do a pushup! I was stronger in 8th grade. By the end of the summer I was benching 115 lbs 8 times and could do over 10 pushups. It was fun lifting weights with my dad for the last time before I leave.

One other thing that's new about me is I just shave my head bald now. Using an electric razor every week was too much work, and the razor was already having issues. I bought myself a Headblade and it's really quick and easy to use. If you shave your head I definitely recommend it. I got the moto which is the newest model.

My New Home

I will be starting my career in the city of Richmond, Virginia as a Software Engineer at Capital One next week. I moved into my apartment last week, and so far I love it down here. I knew when I visited to interview that this was the area for me. The weather is great. Mild winters, and hot summers. Everything I need is within close proximity to my apartment. Work is a 15 minute drive. Any store you can think of is less than 3 miles away. The Short Pump Town Center is just a 5 minute drive away, which is the nicest shopping center I've ever seen. Everyone I have dealt with is so kind and the cost of living is similar to home.

Going on a big shopping spree at Ikea was the best. I also enjoyed putting together the furniture, except for the bed which was surprisingly the most difficult piece of furniture to put together. My dad was a huge help in putting the furniture together. Moving everything upstairs into my apartment was a challenge, but the weightlifting over the summer really helped along with my family being there. For the first time in years I didn't feel useless when moving big stuff around.

I think my setup is pretty nice. All of the furniture is new, but I didn't break the bank. Ikea, Christmas Tree Shop, and Ashley Furniture (for the couch) were the main places I purchased my items from. 

I'm going to miss my family, but they're only a phone call away. I live about 6 hours away so a weekend trip home isn't out of the question, especially considering that I get all of the federal holidays off.

I want to thank all of the teachers, and professors I have had throughout the years. Your instruction has inspired me to get to where I am today, and will guide me in achieving my future goals.

I also want to thank my family for supporting and believing in me every step of the way.