Before my third treatment we were able to have some pictures taken by a wonderful photographer here in Columbus. She did a wonderful job and we are anxiously awaiting the final photos, she did give us a few as a sneak preview. These came out great considering Liam did not want to cooperate at all that day, but such is life with a three year old. However, as you see below we are a pretty cute bunch and will cherish these photos for a long time to come.
Giving a sneak peak to what is coming up in the next few months, after my fourth treatment cycle I will be going in for my first set of scans post treatment. Now, I am both anxious and terrified by this. Anxious, because I want to see how this chemo is affecting the disease with the hopes that it is doing its job and shrinking the three tumors that are in my body and also keeping and additional disease at bay and not letting anything else grow. This is the ideal situation but I am also terrified because it is just as likely that the scans will not come back with the ideal situation. With how complex and aggressive this cancer is I am so scared that the scans will show more growth which means the chemo is not working. I know this is the worst case scenario, but I guess that is why they call it "scanxiety".
In recent weeks, I have been fortunate to virtually meet a few adults and/or their caregivers who have DSRCT. We adults who have this are a rare breed and very few and far between. I can't say that it excites me when someone comes out of the woodwork with this, but it gives me comfort to know that I am not the only one going through this. While I know I have a ton of people who surround me and support me in this fight, most of the time it is isolating and lonely. I feel that it is a huge task to ask someone who is not going through this cancer or any cancer really to relate with how you are feeling and what you are going through. It really has helped me mentally to talk with others who have this because most of the time in the "real" world I feel like I am a person looking in from the outside. I just hope that I have helped them in their daily lives, even if it something small, like being the new friend who can relate to their feelings. I know how I feel on a daily basis and if I can help someone else avoid those feelings then I have accomplished something. Talking with these few people has shown me that I am not the only who puts on a brave face each and every day but in reality is terrified beyond belief. It is comforting to know that there are others out there, because it is easy to feel like the only one while battling this cancer. I really just wish there was an easy way to meet these people in person, but this disease is cruel and seems like it never wants to show up in the same place twice. We are all spread out, all over the country and even Canada. I guess being able to talk on Facebook is better than not being able to talk at all.
As I look to the future, I plan on doing as much as I can to bring DSRCT into the spotlight. I will be participating in an event this coming September that The New James Sarcoma Clinic puts on. It is called Steps for Sarcoma, this is a walk/run that is taking place on on September 13th. I am in the process of putting together a team and fundraising page for this. All donations and proceeds go directly to the Sarcoma clinic at The James so that my doctors can find cures for sarcomas. I know that the medical technology may not be available for my cure but if there is anything I can do to help people in the future I will do it and this is where I will start.
A great song for a great fight!!
Fight Song by Rachel Platten