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Monday, April 28, 2014

Drumroll please...No change!

Two weeks ago I sat in my doctor's office, half nervous and half ambivalent about my latest PET scan results. I don't care how many scans you've had (and I've had more than I want to count without getting severely depressed), the "scaniexty" always kicks in. Sometimes it starts the moment a scan is scheduled. Sometimes it waits until I'm in the PET/CT machine feeling the cold contrast fluid flow through my body. And sometimes it doesn't grab hold of me until I arrive at my doctor's office...desperately searching the nurse's faces for a clue of what the results are. I've come to realize that trying to deduce the results from whether a nurse smiles at me or avoids my eyes is fruitless because usually they don't have the opportunity to review the scan with my doctor until right before he sees me, but I still let myself be convinced of good or bad results based on how a nurse may greet me.

This time I tried not to be too nervous because I assumed the clinical trial from hell worked on me...secretly I also hoped it didn't work so I could be taken off the's the first time in my almost 5 years of dealing with a this disease that I hoped a treatment didn't work. That was a really weird feeling. However I have always responded to the first cycle of a new drug protocol, so I thought my chances of staying on the trial were pretty good. So imagine my surprise when my doctor said there was NO CHANGE in the disease, and in fact one lymph node had the nerve to get slightly bigger! He said they spoke to the trial's manufacturer about my "case" to see if there was any way I could stay on the trial, but the answer was no. Any form of progression meant I was kicked off.

And just like that I let out the breath I had been holding. I honestly thought that this drug would be the silver bullet, the one that FINALLY got me to remission. I mean, I was really sick. EVERY. SINGLE. DAY. I was nauseous, in pain, endlessly tired and lost 10 pounds in a month. What were the drugs from hell doing if they weren't killing the cancer? Ruining my life? After the initial shock I started to feel relief. It was over. I didn't have to experience these debilitating side effects anymore! I was free!

My medical team knows the drama I've been going through on the clinical trial from hell, so when I told them that I was annoyed it didn't work but also kind of happy, they understood. So what's next? For the 10th million time we went through my options. It's always depressing to feel like you're back to the drawing board, but it's also uplifting to see how many new options are out there for people like me...options that weren't even there a few months ago.

My doctor did a great job of walking me through the options and his thought process for which one he believed is best for me. Then he mentioned a drug I was on in 2012 for one year...the longest time I've ever been on one drug protocol. The drug, Revlimid, was one of my first forays into drug treatments that allowed me to live a normal life, have energy and just feel like me. The disease did start to progress after that amazing year so I had to stop it. But the team told me that it was possible that one day I could take the medicine again. And my doc said now was the time. He believes that the clinical trial from hell could have "primed" my system ("Ahh, I get it! Just like the NARS Pore Refining Primer I use before I apply my foundation?" I asked. "Uh, yeah...sure...just like it," he chuckled, trying to humor me) to allow Revlimid to work again on the disease. Obviously there are no guarantees, but I can't help feeling really hopeful.

I'm a true believer in the phrase, "everything happens for a reason" and suddenly it became clear to me why I suffered for a month and a half on the clinical trial from get back on Revlimid. My path was clear and all my suffering wasn't for nothing. I'm aware that I could sound somewhat delusional and desperate to find meaning in all of this, but for every bad turn I've had, I've been able to find a way to recognize the silver lining...and usually without searching for it. This moment was no different.

So the plan is to start Revlimid this week...there's a few pre-tests I've been doing before I can start....and see how I do. I honestly feel 80% better since stopping the clinical trial from hell. It severely lowered my appetite (there were days I only ate breakfast) and the morning after I stopped taking the drugs, I woke up starving! It was like my stomach came back to life.

I'm trying to manage my expectations but I'm hoping that I get a good run with Revlimid again. Summer is coming and I was really worried I wouldn't be able to enjoy it. But last week I went out for my friend's birthday and I felt "me" coming back. I really missed seeing my friends, leaving my house on the weekends instead of laying on the couch, and if I'm being honest...I missed having an alcoholic beverage! (I mean, it's the little things! #nojudgement) The two times I attempted to sip alcohol, it only exasperated my side effects. My energy is still low and I do find myself getting out of breathe easily if I walk up stairs or walk fast, so I'm hoping Revlimid will help with that as well. I haven't seen the inside of a gym for months, so I know I need to slowly build my muscles back up.

Hello lover! Hopefully I will see you this summer

Here's to a happy, healthy, high-energy, warm and (hopefully) margarita-filled summer!


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