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Wednesday, April 1, 2015

So, What's Next?

Sheesh, I didn't realize it had been so long since my last post! I find myself waiting to post until I get either good news to shout from the rooftops or bad news to share as the tears fall down my face. I find that in between scans I'm less emotional and cancer feels less at the forefront of my life because I'm so busy living my life. But the second I step into my doctor's office to hear my latest PET scan results, my entire world, my entire existence, my entire body and soul revolves around cancer. Nothing else matters as I sit and wait, praying for good news.

Said bottle of champs. Ready and waiting to be popped.
And my scan in Feb wasn't the good news I had hoped for. I wonder how many times I've written that phrase during my entire "cancer journey". How many times I've gotten my hopes up that this new drug will be IT. This is the drug we've all been waiting for, THIS is the drug that will let me hear those beautiful words: No evidence of disease aka NED. I even have a bottle of champagne in my fridge, ready to pop! But as soon as my doc says, "the scan didn't look so great," my head falls to my chest, I dig my nails into my hand, and try to hold back the tears as I ask, "So, what's next?"

As he pragmatically lists my options, he is frank with me as he explains that my options are less than they were a few years ago. I feel myself stop breathing for a second. I feel dizzy and lightheaded like I'm in a dream, or really, a nightmare. I look around the room as the other doctors and nurses and research coordinators all look at me with slightly sad looks on their faces. I look out the window at people walking down the street, on their way home or to dinner, to a play, to a party, hell, anywhere but an oncologist's office to find out that the latest so-called IT drug has stopped working, and the cancer has started growing again. I've been here many times, in this same office, with these same people who have been working to save my life for the past 5 years and it never gets easier. I think, "Shit. Is this disease actually going to kill me?"

The allo is presented again to me as the only curative option. "But what happens if the allo doesn't cure me?," I ask. "Well then there's an option of a second allo" my doctor says. I feel sick to my stomach. If I could convince myself to go through with the allo and suffer with alll the nasty side effects and it doesn't work--they would expect me to do it again? As the late Whitney Houston often yelled on Being Bobby Brown, "Hell-to-the no!" How could they expect me to do it again? These are my options? I can't. I just can't. This isn't happening.

My doctor told me to take time and think about it the allo again, but when I ask about other clinical trials he mentions a few that have promise. One, in fact, is even an oral medication. "Oral? sign me up! I'm there. Let's do it. Where's the paperwork?" The dark cloud starts to lift from above my head. Of course it's not a guaranteed goal on point or home run or some other sports metaphor my doctor uses that I don't understand. But it could work. I see the light flicker in his eyes as he talks about the trial and how it might me a good option for me. People have done well on it and the side effects are minimal. I nod my head fast and quickly, encouraging him to go down this path and steer far away from the allo. "Again, where do I sign? I'm ready!"

The drug is called ACY-1215 and because it's a trial, it comes with the annoyances of a trial--lots of paperwork, blood draws, tests, weekly visits, etc. And unfortunately, even though it's oral, it's not a friendly pill I can pop, it's a nasty liquid that I must take twice a day, preferably at the same time each day, oh and I can't eat 1 hour before the drug and 2 hours after! "WTF?" I say to Ross as I read through the paperwork and start to complain about the structure of the trial (my father says I have the talent to find annoyance in anything and he might be right) and Ross gently reminds me of the hours I spent in the hospital waiting for my infusions of Bendamustine and Brentuximab and asks if I would rather do that. Touche sir, touche.

So ACY is what's next, I've been on it for 4 weeks now and frankly I'm nervous. Overall I feel fine but I still have some Hodgkin's itching so I'm convinced it's not working. My doctor says it's a slow-acting drug as it has to turn the cancer genes off in every cancerous cell, so that takes some time. I just hope it kicks into high gear before my scan at the end of next month, because I'm not ready to say "what's next" again so soon.

On a bright note, I met a co-worker who has cancer! Yay cancer friends. Of course I wish she didn't have to deal with this beast, but it's nice to have someone who understands what it's like to balance work and the big C. She has a super rare liver cancer that is usually found in children, so she's dealing with a whole different set of issues as the 47th adult ever to be diagnosed with these disease. Ugh, F cancer! She is finishing chemo soon and hopefully that will be the end of her cancer journey. When I told her that I've been dealing with this for 5, almost 6 years, she was shocked. "I thought Hodgkin's was the good cancer! Why can't they get rid of it?" she asked. I told her I've been asking myself that same question for 5 years...at this point cancer should have been in my rearview mirror for a while now, and yet here I am. Still in the trenches. Why oh why??

So that's the latest. If you have a moment, please send a prayer up for me that ACY makes some kind of impact in this disease. I could use a win, for sure.