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Sunday, March 23, 2014

Hollywood Highs and Lows

I've realized that when things are going well in my life and cancerland, I tend to post less because life is good and there's not much to say...but when things are going not-so-well, I want to vent to my faithful readers and let the world know how crappy I feel. So this is one of those posts. Beware, it's a little long...

The last few weeks (I'm not sure how many, I've been telling Ross that I feel like I've lost my sense of time since starting this new trial) have basically sucked. I started the new clinical trial and this one requires a 4-hour infusion of one chemo drug once a week and a daily oral pill of a second chemo drug. Usually I'm all about an oral mediciation. In the past oral drugs have meant low maintenance, easy breezy, and side effect free. This one, ahhhh not so much. I was warned that the biggest side effect from this new drug combo was nausea, but my medical team had figured out how to control it with anti-nausea meds, so I really didn't worry. However, mere hours after taking my first oral pill, I was hugging the toilet bowl for dear life as I proceeded to "release" everything I had eaten that day. Unfortunately I was also on my cell phone headset with my mother at the time, and there was no time to tell her to hold on, rip out the headset and get down to business before I vomited 10 times in a row, so she got a nice soundtrack of my experience right in her ear. I know. EWWWW. If I were her, I would have hung up. But she was a trooper and stayed right there, telling me it was going to be ok. (Later my dad got on the phone and I had another episode, and he said, "Ahh, call us back when you can" LOL. Men. They can't handle it. Poor Ross is completely helpless when I puke, trying to comfort me while simultaneously not looking at the contents of the toilet).

The next day I promptly filled my anti-nausea medication (yeah I know, I should have already had it, but I didn't think it would be a big deal!) and thought that would be it. Well I didn't throw up anymore, but instead I had this thick layer of nausea overshadowing my life. Everywhere I went, nausea followed. I felt like the character from the Peanuts comics with the rain cloud over my head. I hadn't felt this consistently nauseous since 2010 and it really messed with my head. Plus, this month at work has been super busy with lots of travel, so there was no time to be sick. I literally had three breakdowns in one day as I struggled to figure out how to cope.

So my doctors and nurses gave me like five different anti-nausea medications so we could figure out which combo worked. Unfortunately the two I choose to take together put me in a loopy, out of my mind state where I didn't know which way was up or down. It was like I was high, but not in a good way. Oh and I was at work when the loopiness kicked in. Oh and I stilllll felt nauseous! Oh and to make it even more fun, I had bouts of stomach and back pain from the cancer cells dying...which is good news, but it hurt like a #%&*$!!! So I became paranoid that I appeared crazy, couldn't keep my eyes open at my desk, and was frantically trying to wrap things up at work because Ross and I were scheduled to fly to Los Angeles for our friends' wedding that weekend.

Our friends Debbie and O'Neil were getting married and I had really been looking forward to the wedding. The date has changed several times due to the fact that the bride is the personal chef to a huge pop star that shall not be named (Rihanna!) and was on tour with said pop star for over a year. So once the date was finally confirmed and flights were booked, I was going to LA, no matter what.

The night before we left was tortuous. I am the kind of packer that has to try on every outfit before I pack it (shoes and accessories too) so I don't forget anything. In fact, that's what I was doing the night of my massive blood clot...trying on clothes and packing for the Hamptons. Ross doesn't get it...he's all like, "you already know what the clothes look like." But it's just my packing process. I'm committed to it. It's my thing. So there I was, crawling around on our bedroom floor picking out clothes, half trying them on and then collapsing on the bed in pain/nausea. It was a long night but I made it...although I still forgot a sparkly clutch and shaw for the wedding! But worse things have happened.

The next day we were on the 7am flight to LA and the first few hours of the flight were ok, but the last 45 minutes I felt like I was going to scream if I didn't get off the plane. I couldn't get comfy and the nausea had it's hold of me. I knew I looked like crap (I mean who looks great off a 6 hour flight? Except for Ross. He annoyingly looks exactly the same) so when we arrived at LAX and met up with our friends, I was ready for them to say that I looked tired. And Ross's cousin Nyema did not disappoint. We had barely rounded the corner before he said, "Man, you look tired!" Argh! So I responded, "I'm not tired! I'm sick. SICK!," giving him a knowing look like, "You know--CANCER SICK!" It wasn't his fault though. Everyone is so used to me looking and feeling fine, so no one expects me to confess that I am actually feeling the effects of cancer treatment. But this time I was, and I wanted everyone to feel sorry for me, damnit!

We made it to the hotel where I tried to rest, but then I noticed a new affliction had taken over. Smells. Everything smelled the same. My clothes, my hair, my skin, Ross. And this smell made me feel even more nauseous. For the next few days I tried to pull it together and put my best face forward as everyone around me partied, drank and celebrated Debbie and O'Neil. It was good to escape the polar vortex of NYC and get some good ol' Vitamin D by the pool, but it made me really sad that a trip I had been looking forward to for so long was runined beacuse of stupid cancer. I hadn't felt like this in a longgggg time and it really messed with my head. The "why me's" found their way back in...especially when I found out that a few ladies at the wedding were pregnant. That was another dagger in my stomach because here I was with nausea, pain in the stomach and senstivity to smell...classic preggo symptoms...but I wouldn't have a bundle of joy in 9 months. So I really started to feel sorry for myself.

The night of the wedding I rested all day in the hopes I could feel well enough to hit the dance floor, and I'm ashamed to admit it but I asked God to have Rihanna appear (she was rumored to come to the wedding) as I knew a celeb sighting would instantly make me feel better, lol! Rih Rih didn't make it, but her band performed which made it feel like a real live concert. From the pictures you can't even tell I'm sick (I know how to give good face when I need to) and Debbie and O'Neil were beautiful and happy. I also got to see my cousin Melvin who lives in LA and meet his daughter Dakota who is the cutest thing in the world...and has the same curls as me!

Debbie and O'Neil make it official! #hollywoodwedding

"I woke up like this" Uh no, sorry Beyonce I did not.
My back and stomach hurt but I'll never turn down a photo op on the Penthouse floor of a posh Hollywood hotel. And doesn't Ross look smashing in his tux?
Cousins! There's nothing like a child to make you smile 
We took the red eye back to NYC and I went directly to my doctor's office where I burst into tears and begged them to do something. I hated the way I felt so much that I even asked to get off the trial. My doctor promised me that it does get better and they can figure out how to manage my nausea, so I should hang in there. This week I had a break from the oral pill, so I did feel much better. But I start taking the pill again next week and I'm a little nervous. I can't go through this again, I need to have some semblance of a normal life.

This was a really hard lesson...realizing that I'm not in control of this cancer thing and side effects can still mess with me. Here I was, thinking that I had everything under control and it's not always that simple. I have a PET scan in April and that will determine if I stay on the trial or not, and I just pray if I do stay on it, things truly get better.


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