Things were very tough when I got home from the hospital I was carrying over 15 pounds of water weight (*we now know it was more than 30 pounds!), and it was extremely difficult to move or sit or lay down. I was so uncomfortable - and therefor super cranky and emotional. I couldn't do anything for myself. I needed help to just get up out of a chair, to lift my leg onto the footrest, even just to wipe a stepped-on-rock off my feet! Relying on others to do everything for me was extremely difficult for this "strong willed" independent 31 year old.
A panic attack over my water retention and ascites sent me to the ER on Sunday (after coming home on Friday) in a panic that I should have been given an albumin infusion while in the hospital. PTSD was rampant in my brain of Saoirse never coming home after her last admission. You see, I was living exactly her last hospital stay - third spacing fluid, so uncomfortable and full it kept her from functioning; squished liver; trouble breathing with fluid in the lungs - She was sent to the ICU and she never came out. I didn't want that to happen to me, and in my head, that's where I was headed. The reality for me, however, was much much different. The ER drew labs and the doctor put a call in to my oncologist to discuss things. Turns out my labs were so much better than just the two days before, that nothing was needed to be done, and I was reassured that my body was actually moving in the right direction to healing itself. This reassurance allowed me to relax a bit and helped me be more "comfortable" being home.
Over the next few days the fluid slowly started to recede just enough that I could eat a little bit more food at the time. On Thursday, June 30 I went in for my first dose of Brentuximab. It was a strange to be back in the same place again. My usual nurse was ready and waiting for me. It was a busy day at the Addison infusion center, and almost every chair was filled. The drug itself is only a half hour infusion, but on the first day there is always a lot to do to prep for a new medicine - and this was a new medicine for the clinic as well. I was there for about 3 hours total. Not so bad, considering my first ABVD treatment I was there for 8 hours! The only pre-med for this infusion is Dexamethazone - a steroid to help curb infusion reactions. The nurse warned me that the pills were very bitter, and they definitely were. I appreciated the warning (and the crackers to get rid of the taste!). Once she got my IV in and connected, she hooked up the Brent. It goes in pretty easily - not at all painful like some of the drugs from before (yay for not needing to get a port put in). She watched me afterwards and gave me some fluids just to make sure I didn't have an immediate reaction that would need attention. I sat with my coloring, and felt pretty normal and comfortable. Then it was time to go home.
After getting home, and getting settled, I was feeling pretty great. I decided to watch the movie version of Rent, and was belting out show tunes for two hours (thanks to the help of Mr. Steroid that I had taken). The highest risk of reactions from Brent is the 24 hours after infusion, so Mike was obsessively taking my temperature in order to make sure I didn't spike a fever. This led to a hilarious incidence of my temperature actually DROPPING and causing me to have to make a call into the on-call doctor at the clinic. I dropped below 95 degrees (according to one thermometer), but I felt fine otherwise. The on-call doctor said it wasn't a concern, so I was able to go to sleep and not have to keep checking. Of course it was normal the next day (and every day after that) no problem, but it was a rather funny reason for having to be on "fever watch."
Each day after chemo my swelling seemed to be going down. By fourth of July I was feeling comfortable enough that I could sit up and go to a family cook out. I still needed help to get around and in and out of the car and things like that, but I was feeling like it wasn't as painful as it had been. It was nice to get out of the house and see other people! I lasted about 3 hours and two plates of food in the heat, and then we headed home. It was a relaxing day. The next three nights I was up every couple of hours peeing out tons of fluid. Each day there was a significant difference in the swelling and my comfort. I was able to sit up for more of the day each day, and was able to finally have my legs back to normal by Wednesday when I had to go to my doctor's appointment. And, oh yah, the tumor on my back was visibly shrinking! It actually hurts when it shrinks, but the pain is totally worth it in the end. She was very happy with my progress, but was concerned about my high heart rate. An EKG showed nothing to worry about immediately, but she was glad that VNA was coming out the next day to check on things again. (More on this in another post.) Down to 106 pounds though, but with the fluid gone, my appetite was coming back full force and I have been eating non-stop ever since.
So far this drug has been a blessing. It has caused some additional things to worry about and think about, but it is acting as it should in my body, and has helped immensely already. Keep your fingers crossed that it will continue to work just as well in future doses, and that I can be done with this all by the end of the summer! Here's hoping!
As always, thank you again for all of your support, and if you want to help, or know someone who wants to help out, please take a look at our Needs page and contact me if you have any questions or just want to chat. It's quite boring here after all.