The Day of Depocyte

Some days are better than others, that is for sure and the last 24 hours have been interesting to say the least. I think from my husband’s perspective, it was much worse than I will ever be able to portray. I cannot imagine the emotional distress he had to endure as he watched me, helplessly waiting for me to wake up and think what is next. I know I would be a wreck if it were reversed.

Yesterday morning I had only around 3-4 hours of sleep, but I had to get up and ready for my new IT chemo 1. It is Depocyte and Cortisone infused directly into my brain via Ommaya Resiviour. For my new followers, it works like a port, but its on my head. (They had to shave it, so now it looks like a cool growth) We call it IT or intrathecal chemo. Since I had had some recent problems with it, I had been extremely nervous to start back. The last thing you like hearing is “something is not right. No.” and look up to see blood. I think I’ve been scarred!

So with a 3 AM Ativan and a 10AM Xanax on board, I felt I was ready. I had a 3 hour amazing quiet and prayer time talking and reading with the Lord and I knew God was going to walk into those doors with me. I didn’t run stairs, I just stayed as calm as possible, though my mouth told otherwise. I realized it about half way through meeting with my doctor and I was like, oooo that is nervous talk. We went to the infusion area and I reclined, butt warmers on, snuggled with some pillows and blankets, and threw my headphones in. Along the way I added a few songs I liked and I turned the volume all the way up. This way I had no idea of what was going on! Perfect! I’d open my eyes to a thumbs up or would pause it a couple of times, but overall that helped tremendously. Until she was done.

Uh-oh. “I feel nauseated.”

"Ativan? Altoid?" I’ll try, but I know this nausea. This is the one that cannot be suppressed as much as you humanly try. But I felt both ends screaming. You could’ve counted to 30 and it was all I could do to contain. They stood me up and hobbled to the bathroom. I was about to faint. GREAT. I must have vomited for what felt like and eternity, but for at least 15 minutes. They want to access my port and instead crazy lady words came out, "I.V." Are you kidding me Nadine? When in God’s name have you EVER asked for an IV? That is desperation. I knew they could do it faster, hopefully on the toilet. lol. Problem was, they wouldn’t let me have it there. So now with ever last piece of energy I have I have to get up, wash hands, and somehow make it back to the chair without fainitng. Skip helped me and I made it. Plopped into the chair and continue dry heaving dry between passing out. I swear a minute on a minute off. I couldn’t even cry. It was awful. I kept asking if it was Decadron and not cortisone, because this is the same reaction I get to Decadron. But no. they remembered, thought they ALWAYS forget there and I have to remind them. What else could this be, what else? No one seemed to have an answer, but I guess the most urgent issue was getting my body to stop heaving. I finally after a long time, fell asleep. I felt like I was waking up from surgery, like you feel in recovery if you've ever had surgery. Carmen just has that voice. I think it was 2:00 the first time. The second time was 4 something. And I remember her saying we need to get you home, and something about traffic. I laughed to myself because we are up in the boonies, there isn't much traffic where we are going. They got me a wheel chair and the only thing I remember was the weight of my feet and legs. They felt as if every step was trudging throw almost hardened concrete. I do not remember the ride home, but I remember briefly seeing my mom leave and me basically fall on the couch. Where I lay, I stay. I vaguely remember the kids voices and some video games, but I crashed. The last thing I remember is 8:00 PM. I came to a little and tried to facebook since I never updated anything, and realized that was 10 hours ago. Whoa. Poor people. One friend last week said she figured no news was bad news in my case. Yep, bad news. But I could barely even get my fingers to type and kept falling asleep between sentences. It was kind of humorous.

Skip decided I needed food and water, and we had some left over rice and veggies. That definitely helped and I watched them play games for a while. Around 10 I guss I decided I would go to sleep wondering how that was going to go seeing as I slept all of Friday away! Well, it went well. I still have heavy legs and I’m slightly off balance, so I’m guessing the dose has completely pissed of the lining of my brain. Funny, my headache has not tried to rear its ugly head. I slept completely through to 4 am, then got up at 6 for quiet time.

So a complete 24 hours has passed and I really don’t remember much of it. I’m going to keep trying to rest today. Keep my eyes closed and pray really hard that these new drugs, that seem stronger, wipe out every little tumor ball like PacMan on a hunt.

I’m sorry it wasn’t better news, but I am convinced that the prayers of #teamnadine and beyond, were what kept this from getting any worse. There was one moment I thought, "man, this might actually be it. This doesn’t even make sense. When are they calling an ambulance, because I’m sure this isn’t normal.” But they didn’t have to and I went home. Thankful for another day.

On an awesome note, after my extra week off of Topotecan and my 7 days off of Ibrance, my CBCs (blood levels) looked awesome!!! Yeah! She went ahead and ran the tumor marker for me because I was nervous. So that should be back in two days. According to my labs, I’ve been the healthiest sick person there is. I started back at the YMCA this week and it has really been good. The children remain withdrawn until this weather can chill. I think we are going to spend a few days in Washington, D.C. since I have never been and me and Madison always talk about going. TKeep those prayers, happy thoughts, positive vibes, whatever you’ve got going, and I'll keep updating. This fight is LONG from over. Much love and GA Peaches, Happy Snow Day!