Thursday, May 7, 2015

An Overwhelming Thank You!!

It has been just about six months now that we have been living in this "Cancer World". While, it feels like a million years already, it is still just a blip of time in my young life.  Over these whirlwind six months I cannot begin to even tell you how much support, prayers/thoughts, well wishes, kind words, help, gifts, meals, love and friendship we have received.  This means the world to me and my little family, I guess it really is true what they say, you don't really know the impact you have on other people until you are in a situation that you need their support and love.  We are so thankful and will continue to be thankful every day of our lives for all that you do.  With everything going on and how busy life is in the "Cancer World", I know that I haven't able to reach out to each person individually but please know that Don and I are incredibly indebted to each and everyone one of you.  

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.  

I have now officially completed three of 14 treatments with the fourth on the very near horizon.  I am still very lucky that the side affects haven't been too bad.  I did have a couple of days of feeling queasy but I feel great considering the toxic drugs that are coursing through my body :).  The two side affect that is getting me right now with no end in sight are the irritation in my mouth and the chemo brain.  I don't necessarily have open mouth sores but it feels like my mouth is continually scorched by hot coffee, which throws my taste off so much that eating is not really fun anymore.  However, it does give me an excuse to eat all of the popsicles, ice cream and smoothies I want :).  The chemo brain is the worst, I am college educated woman and most of the time now I feel like a complete idiot.  I forget what objects are called or forget what I am saying halfway through a sentence.  This is the best because then I just stand there with this dumb look on my face and all I want to do is laugh because it is so idiotic that me of all people is rendered speechless.  I had heard rumors from people about chemo brain but never did I imagine it would be this bad.  I am also doing my best to avoid infection, it has helped that it is getting warm and we are out of flu season.  
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