Outburst

 

Today was a struggle. I’m overwhelmed. I really want to do this trial. That means a lot of things. Means more travel, more expenses, more time away from the kids. The first visit would be the longest and due to Covid, I have to go two days before any short appointment driving up costs. I was denied social security before they even knew surgery was successful. They didn’t get all the tumor therefore I should qualify so I’ve been trying to fix that. Not working for a year has mentally frustrated me. I hate not being able to help my husband. Though we’ve always been able to live off his income that was before all this. Before medical bills, traveling, surgeries, housing in LA. 

I know we will get through this no matter what BUT how do people financially handle this? I’m very thankful Derek not only has a decent paying job and a very understanding boss but not everyone is so lucky. I have stage three, technically unresectable cancer, most likely won’t be able to maintain the job field I’m trained in any longer, and I can’t get social security to help during this time? Shit, how do single parents do this? It’s insane to me. 

Then if I even qualify for that trial after my physical and tests, I’d have to travel back there every three weeks for four doses. Which again, if it wasn’t for Covid I could fly down there get treatment and head back but now I have to spend 2-4 days there each time. And my favorite part, I can’t do telemedicine to even see if I qualify, I have to go there in person. Is this trial the right decision? 

To me, it sounds so much better than doing chemo again, but my chemo worked well for me, I KNOW that. This trial is exactly that, a trial. It alters your immune system, boosts it, and makes it attack only that NY-ESO-1 antigen I have. Sounds loads better than taking poison again. Chemo literally knocks my body down in every aspect. The idea of chemo again haunts me. I feel in my gut and I have what I feel is a sign telling me to do the trial. I want to listen to it but the trial means a lot of work, finding sitters for both kids and dogs, Derek or my mom taking off work to go with me, money, lots of paperwork in a short period of time. The “easy” choice is chemo. I hate that there are no knowns with this. 

Every sarcoma center is so spaced out, and each facility, and sarcoma expert has different ideas about what I should do. I know no matter what kind of cancer I would have had I would have had to advocate for myself and what I want to do but having so many opinions because no one really knows what IS the standard treatment and all those opinions being so far from home just sucks. 

Anyway, my morning was filled with phone calls, projects, figuring out appointments here and in Texas. I had a bit of energy and was up for cooking. Cooking is therapeutic for me so I was kind of excited. I haven’t cooked since Christmas since I haven’t been home nor physically up to try it. I started getting ready, pulling things from the cabinets and fridge. Nothing is in its place, not the food, or cooking utensils, and pans. It all became too much. My brain couldn’t take it and I swiped all the stuff on the counter onto the floor. I started to cry and walked past my alarmed, wide-eyed husband and daughter. Derek asked me what was wrong and I just fully broke down. 

“That’s my space out there. It’s ruined!” I shouted through tears. Derek, confused, asked, “what’s actually going on?” I tried to catch my breath and explain… you see, I’m sore and exhausted, more exhausted than pain but today was the first day I thought I could DO something. Not just something but COOK. DOING something I ENJOYED and how I express my love for my family. Now, after having wasted a fair amount of energy just looking for the things I needed, I was running out of steam and barely got my dish going. I wasn’t going to be able to finish this, I was going to let my family down, I was going to let ME down. It’s been so long since I’ve contributed to this family at all, and now I wasn’t going to be able to again. 

With little sleep, too much on my mind, and the let down of my body once again, I just couldn’t hold back. I started to yell about everything and nothing, probably didn’t make sense. Hopefully, most of my breakdown inaudible. 

I’m just over today. I’m glad it’s over with hand I hope that get another possible sign as to what to do.