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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!

Saturday, April 5, 2014

My Month of Hell

"It gets better" is not just the mantra of the LGBT community to gay youth, it's also the mantra of my medical team of doctors and nurses. "It gets better" they say, over and over. And it has. But as soon as it gets better, it gets worse.

Since the first week of March 2014 I have been on a new clinical trial and it's been kicking my a$$. Out of a list of 28 possible side effects, I have experienced 18. Want me to list them for you? Sure! They include: low red blood cell count, low platelets, feeling week and unwell (ha!), infection, constipation, nausea, vomiting, fatigue, abnormal liver function, ECG changes, salt imbalance, change of taste, shortness, itchiness, low white blood cell count, pain, fever, abnormal heart beats, diarrhea, stomatisis, chills, swelling, changes in blood work, weight decreased - anorexia, headache, cough, rash, low blood pressure. So when one side effect gets better, another one comes in it's place. It's like they know I have relief before the next one steps in, and it's so frustrating.

I was hoping that at this point I would have some sense of normality or routine. But I still feel so out of it, so "off" from my normal life that it fuels my frustration and sadness. I feel stupid for being so cocky that I could conquer this cancer thing...I preached to anyone that asked that I could live my life and even thrive despite cancer. It rang true at the time, but now I feel like the rug has been yanked from under my feet and I'm left graveling on the floor. In the matter of a few days I went from feeling almost to (dare I say it) completely normal to feeling like complete crap.

When I embark upon each new clinical trial I'm given a packet that I have to sign, full of medical jargon and side effects. But in the past I never experienced side effects that were too debilitating so I foolishly thought I would be the same for this trial. Although as I mentioned below I was informed about the possible nausea but I just knew that wouldn't affect me. And now I'm paying for it.

One of the hardest parts are the reactions from others. People aren't used to seeing me feel unwell, so they assume I will get better within a few days or surely a week. But it's not a cold, it doesn't work like that. I have absolutely no idea when I will feel better and I feel worse when someone asks if I feel better, only to disappoint them with the same old response: "No, but hopefully soon." It's crushing me and I feel angry that it's so hard for people to understand how things with me can change so dramatically. These drugs are poison and even though the current drugs are supposed to be less toxic, they can still change your body in an instant. It just reminds me how different I am from everyone else, how alone I feel because no one understands. I know I can't expect them to understand, but I just wish they could.

The emotional part of this experience continues to haunt me. I literally cry everyday because I feel so uncomfortable in my own body. As I wiped my tears and my mascara on Ross's fresh white t-shirt (sorry!) one night, he reminded me that I've been through worse, I've felt worse, and I've experienced much worse. I know that logically, but honestly it's hard for me remember. I suppose its the same memory loss that women have after having a baby...they forget how much it hurts that they are shocked by the pain during baby #2. I honestly can't believe what I've been through before, I can't believe I survived so many different types of chemo and continued to work.

This may seem silly, but I feel like I'm weaker now then when I started this journey. I feel so worn down and low at times, that I admittedly have those deep dark thoughts that crept into my mind back in 2009. There are times when I'm in such extreme pain and feel so lost that I think to not exist would be better than this. Now death has been my greatest fear since a very young age when I would have anxiety attacks about dying and creep into my parents' bed for comfort. But when your body betrays you and nothing seems to make it better, you just want the pain to stop. Just for a second you can allow your mind to go there, to wonder what it would be like to not be here anymore. And then you acknowledge the fact that for you, yes the pain would be over. But for your friends and family, it would just begin. I often think about the fact that I came so close to dying after my blood clot and how Ross was this close to coming home to an empty house without me, with wedding presents still to be opened, thank you notes still to be written, and I remember how selfish I'm being. It's not just about me, it's about the people who love me.

I feel ashamed of those thoughts, for not wanting to be a "cancer warrior" anymore, for not wanting to be strong. I want to push through, I desperately do, but it's hard. A few months ago I felt strong and confident that I could go to work, hang out with my friends, be a good wife, think about starting a family, and living my life. Now I feel foolish at the idea I could handle starting a family, haven't seen my friends in weeks, rely on Ross to handle all the household work, and barely function at work. I would scream out loud if I didn't feel like I wanted to throw up.

I hate being such a downer and truly hope that in the next few weeks it truly will get better.