Tuesday, January 18, 2022

2021 Review

Coming up in a month will be my two year scans. It will really be two years and one month, but who's counting? With that intro I guess I probably already answered your main question. Am I still cancer free? And the answer is a resounding yes

In the year since my last update nothing has really changed on the health front. I got my port taken out in May and that went really well. One thing that was different about getting it removed this time versus the last was that this time they didn't put me under. They just gave me a local anesthetic. Though I was draped and couldn't see what was going on, it was still weird to be fully awake while they were removing this thing from my chest. They gave me status updates on the whole procedure which helped. Overall the whole process was much better this time because it went faster and I was able to drive myself home. I was in and out of the outpatient facility in under two hours. I felt uneasy about getting it removed because it was kind of a safety blanket for me in that I would be ready to go with chemo immediately on a recurrence. But at the same time I'm very glad to not have it anymore as it proves to me that I'm making forward progress again. Keeping it would only hold me back.

I was pretty busy last year. I went to many sporting events like the Penn State vs Indiana football game which surprisingly was my first time on the campus since graduating in 2017. My brother is a student there so I will have more of an excuse to get there more often now. And of course it was great seeing Beaver Stadium full again this fall. I went to a few minor league baseball games. Of the games I went to I really enjoyed going to see the Lehigh Valley Ironpigs. The food and stadium were really nice. They have a bacon theme so they have food options like bacon on a stick, and this sandwich with pulled pork, ham, and bacon. They call it the 3 little pigs and it was delicious. We went to the beach in the summer which was a lot of fun. The water was great, a lot warmer than the last time we went so we were in the ocean a lot. This fall I kept busy with watching college football, managing my fantasy football teams, and went to see some comedy shows.

I've been sticking to the kettlebell exercises and they have worked great for me. I've kept on schedule and haven't had any injuries or setbacks which is better than anything I've really tried post arm surgery. I get decent cardio from it, but in the late summer and fall I went to the park once or twice a week to walk the trails for a little bit extra. Being in better physical shape has been a goal of mine since my last recurrence. I believe that the conditioning I was in contributed at least a little bit to how well I tolerated the treatment. God forbid I recur again, but if I do I want my body to be ready for the pounding.

I still have not returned to the office and as of now there is no return to office date. It has been a real disappointment not being able to be in the office, but it did give me ample time to visit family throughout the year. I especially enjoyed getting to be around Peanut as I know he enjoyed my stays also. He is the first dog my family has had and he is the best!


Please stay safe everyone, and as always keep those battling life threatening illnesses in your prayers.

Saturday, March 6, 2021

One Year Scans

I recently had my routine scans and ...(Drumroll), I am still showing no evidence of disease. Very exciting and relieving news. I am so lucky and fortunate to be in this position. Lets keep the clean scan streak going.

I am still having scans every three months, but will transition to every four months when I'm two years out from completing treatment. The next one is at the end of April.

I still have my port installed. Occasionally I will notice it when exercising or my seatbelt rubbing against, but for the most part it does not cause me any discomfort. It is annoying having to get it flushed every six weeks. It is a simple procedure and only takes like 5 minutes, but it is an extra trip I have to take. We are a bit hesitant to remove the port due to my recent track record. The last thing we want is to remove it and have to reinstall it soon-after. To reduce the chance of this happening the best solution is to wait. During my last appointment we talked about getting it out in the summer, (about two years after completing my most recent radiation treatment). To me getting the port out has more of a symbolic meaning to it. It is more than being done with the inconveniences of having it, it is being one step closer to being done with this disease.

In my last post I mentioned that I purchased a kettlebell to exercise with. Well, I'm still keeping up with it. I've been exercising 5-6 times a week and feel great. A lot of the exercises I perform are dynamic full body movements which are easier on the joints, the most important being my right shoulder. I don't run into the same amount of pain that I have had when doing traditional barbell training which is a huge reason why I have stayed dedicated to this routine. I'm really glad to have found a workout routine that works well with my body. I'll provide some more details about this in a future post, but just know I'm continuing to get stronger every day and that I feel the best I have in years.

I'm still working from home and the plan from leadership is that we will be working from home through labor day. Receiving that news was disappointing to me, but I am making the most out of it such as visiting family. I'm really excited to visit them soon since they just got a puppy. His name is Peanut.

Please stay safe everyone, and as always keep those battling life threatening illnesses in your prayers.

Sunday, September 20, 2020

Six Month Scans

Around the middle of June I had a full body bone scan and chest CT scan and both came back clear. That puts me at six months cancer free. The last time I could say I was six months cancer free was..., October 2014. Great news!

In late March I began having a difficult time breathing. Horrible timing on that one. Remember I had radiation for a lung nodule last May? One of the side effects that can occur up to a year later is radiaton pneumonitis, and that was the cause of my problem. The main treatment consists of steroids, but with the coronavirus going around my oncologist advised against them because they weaken the immune system. As an alternative, I performed breathing treatments with an incentive spirometer and a balloon. I also made sure to drink lots of water and took advil twice a day. Not sure if the water and advil part made a difference, but it took about a month to resolve and I have been good since.

A week after my last post, my employer sent us all home, and I have been working from home since. While I have been really disappointed in not returning to work in the office I have been able to do some things I would have otherwise been unable to. For example, I spent a lot of time with my family this summer. My brother lived with me in Virginia for the month of June, and I stayed in Pennsylvania with family for all of July. I really enjoyed this summer. Basic things like swimming in the pool and laying out in the sun were the things I enjoyed the most.

Some of my goals for the year such as getting in better shape/stronger have been more of a challenge, but I have worked around it. I wanted to join a gym, but they have all been closed and only recently reopened. With gyms being closed, it was really difficult to find home gym equipment, but I was able to purchase a kettlebell. I have been training with that since I returned in August. I also took advantage of our home gym when I was home in July.
 
I will be working from home for the rest of the year so I will need to find some more things to do. I am all caught up on videogames I had been meaning to play, and there aren't a lot of tv shows I'm interested in. I'm pretty excited for football returning. It was a nice surprise that the Big Ten announced that the season will be starting this fall. I was really dissapointed that Penn State would not have a season, so this certainly livens up the fall for me as well as many others. I'm in a couple fantasy football leagues so that will keep me busy as well.

Looking forward, my next scan is coming up soon. I'll just have a chest CT this time, so I should just be right in and out of the hospital. Let's keep the streak of good scan results going!

Take Care Everyone

Friday, March 6, 2020

Treatment Complete

Long overdue for this update, but here it is.

On my last update I was in cycle 5 and the plan was to go with 6 cycles of chemo, but since I was having problems with skin toxicity we decided to drop the dose back down to 30 mg/m2. During that time there was also some collaboration between my local oncologist and the one I've been consulting with in Cleveland. The oncologist in Cleveland wanted to go with another year at the lower dose with treatment every other month, and my local oncologist wanted to stop at 6 cycles. I decided to just extend it to 8 cycles and be done.

The last three cycles weren't too bad with the adjusted dose, and I completed them without delay in early January. I had another clear scan in December which was awesome and made me feel better about stopping treatment. I have my first post treatment scan coming in a few weeks. Let's keep the clear scan streak going.

Looking back at how this last chemo regimen went makes me feel uneasy. My big concern is that I did not complete what I signed up for. I wanted to do 6 months of Doxil + Temsirolimus. I believed in that regimen. I read the research paper. My oncologist in Cleveland believed that it fit me well. Unfortunately those drugs just didn't agree with my body. I never had delays or dose reductions with prior chemos, but I had dose reductions, a drug elimination, and delays with this one. With this being my third relapse I needed things to just work.

Though things did not go according to plan, they have (knock on wood) worked so far. I have had three clear scans in a row with potentially a fourth soon. I completed eight cycles of Doxil and seven weeks of Temsirolimus which we can all agree is much better than nothing. I had my heart tested for damage, and and it was perfectly normal which is great news for someone who has had a lot of Anthracycline agents (Doxorubicin, and Doxil). And most importantly I got to complete treatment. Most people don't ever get to ring the bell on a relapse for Ewing's. I've done that twice now.

Since completing treatment I have been trying to get back to feeling normal. It seems like everytime I get to this point where I start exercising, getting more energy etc., I relapse. I'm still going to keep trying to get back in shape. It's been a long time since I've ran a full court pickup game of basketball. I think that's what my next big goal is going to be. I've been going to the park once or twice a week the last couple of weeks and walking the trails. I know it sounds like I'm old, but I have to start somewhere right? If my next scan comes back clear I'm also going to join a gym. I've lost a lot of muscle mass from the lack of physical activity for so long, and it would be great to improve on that. There are a few gyms close to my apartment and I found one that I want to join.

Last thing. Below is another one of those cheesy certificates for completing chemo. Hopefully I don't have to try to earn another one.

Tuesday, November 5, 2019

Another Cycle Down and Some Good News

So first let's start with the good news. My most recent scans came back all clear! The only thing that was on it was the nodule which was radiated and that is continuing to shrink. It measures just 2 mm now. With my last two scans being clear I have a new streak now. My last streak ended in December 2016, so this is really exciting!

Right now I'm midway through cycle 5 and I plan on having one more round of Doxil. The plan will be finalized when I have an appointment with my oncologist on Thursday, but that's what I think the plan will be. Remember the original plan was 6 months of Doxil + Temsirolimus, so I think 2 months of that, then 4 months of Doxil alone should be good enough. Hopefully I can stop because I'm really burnt out and would like a break.

As for current side effects, in cycle 4, some more of the skin toxicity showed especially on my feet, and it is getting much worse this cycle. I have a few mouth sores which are as bad as they were when I was on Temsirolimus. And to top it all off I just caught a cold which is making me even more tired right now.

Not much else to report on. I've mostly been taking it easy. A few of my favorite tv shows just came back on including Mr. Robot, and The Walking Dead which have kept me busy. Also, I've been enjoying Penn State football which are off to a great 8-0 start. Thanksgiving is coming up in a few weeks which is a holiday I always look forward to.

The side effects have been rough, but at least it looks like I'm in a good place right now. I'm looking forward to the end of treatment and many more clear scans.

Friday, September 13, 2019

New Treatment Plan

Not long after my last blog post I had an appointment with my oncologist to decide what to do next and that is to go with Doxil alone. My oncologist recommended Doxil because he doesn't want me to burn through more chemos than is necessary. Trying all of these chemotherapy drugs can make the cancer more resistant and can also eliminate me from trials. Going back on Doxil isn't introducing anything new and is a treatment that can work well for me. I wish I could continue with Temsirolimus, but that is out of the question because it amplified the bad side effects from the Doxil. My oncologist said that the burns I had were the worst he has ever seen from these drugs. Going forward I will continue to receive Doxil once a month and the plan is to do a few more cycles. Also my dosage of Doxil is increased from 30 mg/m2 to 40 mg/m2 because that is the only chemo I'm receiving. So far I had two cycles of Doxil + Temsirolimus and just had my first cycle of Doxil alone. I have a CT scan the week after my 4th cycle, and if that scan is good I think I'll do one more cycle.

I'm almost through this first cycle of Doxil alone, and I'm managing much better. I had one small mouth sore that resolved in a few days, and one burn in my crotch area. To help with preventing the burns I placed ice packs on all of the areas that were previously burned during the infusion. I had the infusion on a Friday and did not leave the air conditioned apartment the entire weekend. I also took off work that Monday to keep out of the heat. Those 4 days I iced every few hours, and when I showered it was a cold one. I have also been applying Udderly Smooth Cream with Urea to the previously affected areas nightly. For mouth sores I drink Healios every morning after eating breakfast. I did a lot of these things when I had the nasty side effects before so really the big difference is that I'm not receiving the Temsirolimus, but taking these extra precautions can't hurt.

Other than that not much is new. It was a pretty uneventful summer. My treatment and its side effects really sidelined me for the most part. I feel like all I have done lately is go to work, rest, chemo, repeat. One bright spot of this summer was when my parents and my brother made an impromptu visit for the weekend before I resumed my treatment. I felt pretty good so we did a lot. We went to a nice barbecue restaurant, walked around Carytown, and visited Maymont. It was a really hot weekend, but we made the most of it, and it really lifted my spirit before resuming my treatment. The pictures below were taken at Maymont.

Next post will be in a few weeks after I get my next scan results. Take care everyone!