Updates

 I'm not sure why I "hurt" today. Not physically, but emotionally. Nothing really dramatic has happened. I just don't feel upbeat in any way.

 

Maybe it's because I had to write something about "my story" for the back of the coloring book? I'm really not sure what it is but my heart hurts today. I feel a sense of sadness and general grief.

 

I hate thinking about cancer. I hate knowing what it can do to people. Not just physically to a person but the ripple effect it has. It doesn't just hurt the person with cancer, it hurts the people around them, and then those people around that ring of people, and so on.

 

Life is so precious. Each and every day at some point or another everyone takes it for granted. It's literally impossible to soak up every single second and the way lives, in general, are set up it's impossible to do everything you want to in your lifetime.

 

Derek and I talk about the traveling and how we can make it a reality. But without the right degrees or opportunities, you can't get a job that you can do from home. So that means going back to school, getting a degree to do so, it means more time and money wasted on things that don't matter just to get to the things that do matter, and who knows what will happen in that time frame. Maybe our time will already be up by then. It's just sad and frustrating to know that so many people will never get to experience the things they want to or need to in this life-time.

 

Derek has been spending all his time (when not taking care of the kids/house) trying to find a way to make money from home. He's constantly surfing the web or coming up with ideas but it always leads back to the fact that he's not qualified. Neither of us are. I guess that's to be expected when you've both worked physically demanding jobs.

 

Such a stupid cycle society puts us in. You have to work long enough to retire just to be able to enjoy your life but by then, some of us won't be there.

 

I read a story earlier of a girl with osteosarcoma who fought so hard starting in high school and making it through college during her fight. She wanted to travel, too. She wanted to see the world. They said she made it to Paris and Alaska. While that's so wonderful she made it there, my thoughts, though maybe a bit selfish thought, "that's it?" She had such a short life. She deserved to see so much more. She deserved to experience so much more. She already didn't get to become a mother, a wife (if that's what she would have wanted), meet goals in her life. Couldn't she just have that one thing? See the world?

 

It just hurts my heart so much to know the things people miss out on because of the societal barriers. I hate it.

 

Today I hurt but I know tomorrow after I grieve I'll fight some more. I want to fight for those people who didn't get opportunities. I want to fight for every child, man, woman, who has had to miss out because of this awful disease and the stupid structures that bind us back from just LIVING.

 

I've been noticing a pattern to my grieving. One day I hurt and break down. The next day I channel that into something bigger and better. The only issue with today is that today I start my Sarcoma Support Group Zoom meeting. I don't have time to grieve today, at least not all day. If I wasn't the one putting it together maybe it'd be easier to grieve because that is after all what it's for, right?

 

Anyway, enough sadness. My mom and I are planning our trip to Chicago to see about the trials that will be coming up this spring and summer. Dr. Pollack personally called me and explained that the odds of me being eligible for the first trial are slim to none but that the one in the summer with the "vaccine" I should be eligible for. From the sounds of it, we will be driving to Chicago and spending a couple nights there before we return back. I hope we are able to keep me as healthy as possible on the way there and back.

 

I reached out to Dr. Tseng to see if he received my CT images today. He said he just got them and that he would have the radiologist review them but regardless, growth or no growth, it didn't change my plans at this time. We proceed with the systemic chemotherapy that I'm doing now. He also said he knows Dr. Pollack, the doctor in Chicago running the trials, and would reach out to him about my case so that way Dr. Pollack has a heads up about my diagnosis and history.

 

I'm so happy that I met Dr. Tseng. He's so helpful and seems to know most other sarcoma doctors around the country so if I ever want to do trials or get care elsewhere, he's able to make suggestions and/or reach out. I wish all doctors were like Dr. Tseng. He truly wants to help us and made headway in the sarcoma world.

 

It blows my mind all the time that in 2021 there are still unknowns as far as cancer goes. People spend so much time, energy, and money on common cancers but the rare ones no one seems to put focus on. You'd think it'd be the other way around? It's very frustrating but again, I'm so thankful for people like Dr. Tseng. He really is my beckon of hope. I don't think it was an accident that I met him. If even for the simple fact that he's a GOOD doctor and has connections. Finding a GOOD doctor that really cares and goes above and beyond, at least in my experience, has been very rare. So I'm appreciative of him and all his work.

 

Don't take good doctors for granted.