Treatment Paused

In my last post I let you know that I was having a tough time with the chemo. Well, it got a lot worse for me since then. The mouth sores got so bad that even with painkillers and the mouthwash it was still difficult to eat soft foods. In a little over a month I lost 10 lbs, and honestly it could have been a lot more if I didn't push myself so hard to eat. But as bad as the mouth sores were, the pain from those paled in comparison to the hand-foot syndrome.

My armpits got a lot worse as did my groin. I developed the burns on my elbows, fingers, the back of my knees, and butt. Let me take through one of the hardest two week periods of my battle with cancer...

Monday: I pushed myself to make it in to work the Monday it escalated. I was in a lot of pain. I remember taking Oxycodone twice that day of work just to get through it. Both walking and talking were so painful. I admit I was a little short with people that day. I was so frustrated with the situation.

Tuesday: On Tuesday it was worse so I took the day off. I couldn't make it in. The whole day I rested in bed. I couldn't even get clothes on because my groin and armpits were so sore, I just covered with a blanket.

Wednesday: The next morning I had an appointment at VCU, and making it there was really difficult. I was basically walking like a chicken with my elbows out and legs spread because that was the only way to not be in so much pain. At that moment I knew that I needed some help so I called up my mom to come down. On Tuesday I sent the team a picture of the burns on my armpits to prepare them, and judging by their reactions they never see it get this bad. We decided to pause treatment which I couldn't fight them on. I was prescribed Silvadene ointment, and directed to apply it to the affected areas twice a day. I also got more Oxycodone which really helped with taking the edge off the pain. Later that day my mom arrived. I felt a huge amount of relief when she got here. It was way too much for me to handle by myself, and I don't know how I managed to make it by myself for so long.

Thursday: This was really my first true day of recovery. My mom was able to help me get the ointment and bandages on. I was able to rest in bed, and not worry about moving around. She went out and bought some groceries to get us through the week which was a big help. I was almost out of groceries because I didn't want to make things worse the past weekend, and I was optimistic it would have gotten better before running low. I was obviously wrong.

Friday, Saturday, Sunday: Mostly the same, slow but progressive improvement of the burns. Also some new areas began to show. This included the top of my feet, fingers, elbows, and back of knees. I was pretty frustrated with how slow the whole process was because I wanted to make it in to work by Monday, but I still couldn't get clothes on and not be in a lot of pain. My mom brought in some tank-tops so I was able to at least get a top on, but I was still covering up with a blanket. The picture below is where the armpit was on Sunday.

Monday, Tuesday: I was moving around much better. The heat and pain on the burns was down. The mouth sores were much improved so I was eating better, and Tuesday morning I was able to get all my clothing on. I worked from home on Tuesday, and my mom left later that day.

Wednesday, Thursday, Friday: I made it into work, but when I first tried to put shoes on that morning I didn't realize how swollen my foot was from the burns on top of them so I had to wear flip flops. Mostly through these days it was treating my feet, back of legs, and elbows which weren't as bad as the armpits and groin were, but still pretty sore. The picture below was on that Wednesday.

So yeah, not a fun two weeks. This was probably the worst side effect I ever got from chemo, and right up there as the worst pain I have ever had to deal with. I was very fortunate to have my mom here with me. I couldn't have managed without her.

Now lets get to the elephant in the room, the cancer treatment. I feel great right now, but that is only because my last chemo treatment was July 19th and I've missed three consecutive treatments. I've reached out to my oncologist in Cleveland, and his opinion is that I either try Doxil alone, Pazopanib or Cabozantinib. From my last appointment with my oncologist at VCU he mentioned not doing chemo. I'm pretty stressed out about what to do next. I don't feel like any of these are great options. I really believed in the regimen I was on, and it really sucks with how bad the side effects were for me. I have an appointment tomorrow to decide what to do next. Hopefully we get it all figured out.