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Sunday, December 20, 2015

Putting It All Into Perspective

For as long as I could remember, Christmas has been my favorite time of the year. I start playing Christmas music the day after Thanksgiving, I love decorating the house, and I'm obsessed with planning the perfect holiday parties and get-togethers. So I've been so thankful (#blessed!) to never have to deal with icky "cancer" stuff during the holidays. In my 6 year run with this disease, God has worked it out so the scans and treatments never landed on my birthday or the holidays (oh, because I also feel like my birthday is a national holiday [insert princess emoji here]).

Giant Christmas Tree at my office building.
Makes me happy every day!
So when I went to my doctor this week for blood work and my monthly infusion of Keytruda, I was a little nervous. I didn't want anything to mess up my "holiday flow." For the last 5 months I've been basking in the remission glow, while also completely, totally, overwhelmingly concerned about a relapse. Here's the thing folks...when you reach remission after 6 years of treatment, you don't just stop everything and return to normal. Ohhhh how I wish that was so!

Even though I am beyond happy about my miracle drug Keytruda (which has also been in the news lately because of President Jimmy Carter...Keytruda is FDA-approved for lung cancer and melanoma...its still in trials for lymphoma...but President Carter has been declared cancer-free after undergoing Keyrtuda infusions! GREAT news for the drug. An additional side note: I'm always amazed at how the same drugs can treat many different cancers. Why is that? What does that mean? Scientists, hurry up and figure that out!), I am definitely nowhere near riding off into the sunset without a care in the world.

In fact, I'm almost more scared now then I was before remission! I know, crazy. I try not to think about it, but it's hard when people assume "you're all good now, right?" Well, yeah, kinda, sorta, maybe. Actually I don't know. Here's the deal--no one knows. Although the drug has had ah-mazing results on all sorts of patients with serious disease, no one knows how long it will last. The one thing my doctor knows is that when people stop the drug, the lymphoma comes back. UGH.

So, the plan is to stay on the drug--indefinitely. And on one hand I'm fine with that. I get a monthly infusion that's 30 minutes side effects, no nausea, no hair loss, no fevers...and I'm back at my desk in an hour, having completely forgot that I just had a needle in my chest, dripping serious drugs into my body. It's so weird when I really think about the dichotomy of my life. But on the other hand, it means I'm a slave to science. I can never really be free if I always have to get infusions and blood work and scans and allll the stuff that comes along with cancer. I wish I could do a "month-in-the-life" documentary to show everyone all the crap I have to go through, so they could really understand. I silo everything in my mind, because when I think about it all at once, I might have a nervous breakdown---no really.

And I almost had a breakdown a few weeks ago when I met with my primary care doctor who helped determine my initial diagnosis back in 2009. I've been dealing with some lower back pain that I believe is not cancer related, so I went to my primary care doctor who I haven't seen since 2010...once I went down Cancer Lane, I spent most of my time with as I walked back into her office, I felt all the memories of the first time I went to her office with a swollen lymph node on my neck. At the time, I really didn't believe I had cancer. I thought that there was no way. But she recommended a biopsy to be sure, and here we are, 6 years later.

When she called me into her office, she looked at me and said, "wow, you made it through to the other side." I almost started crying as I nodded and said "yeah, I did." She went on to say that my first oncologist (who she still communicates with...I switched from him to my current doctor when my case got more complicated) had kept her in the loop of everything I was going through. She said that he had been worried about me,  in fact, "very worried" were her exact words. That scared me...I wondered what type of conversations they had and if my original oncologist was concerned that I wouldn't make it. I told her everything that had happened since I saw her last...chemo, stem cell transplant, blood clot, surgery, a wedding in the middle of everything...and she shook her head in disbelief. I know she never imagined I would have to go through all of that when she first examined me.

As I left her office and walked down the familiar hallway where I had previously walked all those years before, I had to stop and sit down. Her shock and concern really put it all into perspective for me. I know what I've been through. I know it's a lot of info that scares a regular person, but when a medical professional is blown away, it really makes me pause and think. I've compartmentalized everything to get through it all--I would never get out of bed if I thought about it all in at the same time. But it's a lot. A Lot.

And yet I'm still here. I don't know why or how, but I'm still here. And still grateful. My blood work at my recent visit was amazing (so good in fact, my doctor left his office to spout the numbers to his team! The next day I came back for treatment and the nurses said he couldn't stop talking about it, lol!) so that is a good sign. Regardless, it's like trying to date again after being burned with a bad breakup...I'm still cautiously optimistic about my new relationship with this hot guy called "Remission." I hope we have a great future together and he sticks around. And I hope he's my soulmate and I pray he likes Christmas as much as I do :)

Tuesday, August 4, 2015

Three Beautiful Words...

No Evidence of Disease (ok, actually 4 words, but NED is the acronym so "of" doesn't really count).

I am still in disbelief that I am using those words in reference to myself. Yes folks, that amazing day is finally here...August 4, 2015 is the day I found out that after 6 years of cancer, I. AM. IN. COMPLETE. REMISSION. I's unbelievable! I hoped and prayed this day would come, but it almost didn't seem like a possibility. I felt like something was wrong with me, even out of the cancer patients I know, I was one of the only ones who was never able to attain remission. The closest I've gotten is partial remission, so to hear I have a "CR", well, I'm speechless.
Current Mood: Ecstatic

Ok, let me back up. After my depressing April post, I started the ACY regimen, which had the distinction of being the only drug I NEVER responded to in my 6-year cancer career! The cancer actually grew on that drug. I wasn't really surprised, as my "B" symptoms of itching and night sweats never really went away, but it was still heartbreaking to rack up another failed drug within my portfolio of chemos. However, in May I started Keytruda aka Pembrolizumab. It's been FDA approved for various cancers and has shown to work wonders in lymphoma. A few other patients at my doctor's office started it before me and almost everyone was showing massive improvements--without huge toxicity. So I was cautiously optimistic...especially after my bloodwork was normal after just 1 infusion! The "B" symptoms stopped and I didn't have any other side effects. Plus, the infusion was pretty manageable, just a 30 minute treatment once every 3 weeks.

But when the word "scan" started coming up, I started getting the shakes. I tried to tell my doctor there was no need to scan, I felt good, I was gaining weight back (a little too much for my liking but still a good sign), and had no symptoms. Let's just call it a day, right? But no, unfortunately that's not how it works and my medical team needed a scan to see how I was doing. So for the 100th time (I've never actually counted how many scans I've gotten since 2009, but I figure the number is up there), I drank a chalky substance, laid down on a PET scan machine and prayed for the best. I was planning on going back to my doctor's office tomorrow afternoon to get the results, already dreading the scanexity that would come from waiting in an exam room, when I ran into my doctor as I was leaving. He said he could look at my scans right then! My emotions were all over the place as I waited for him to review the images, hoping I would only have to wait a few minutes.

Unfortunately the time started to click by, 10 minutes became 20, then 30 and 40. As it got later and later, I managed to work myself into a panic attack because I was convinced that the scan was bad, like really bad. But before I could jump out the window to avoid hearing the results, my favorite nurse came over to me and said she wanted to tell me the good was all gone. I immediately started crying. I felt like it wasn't real, couldn't be real. I was actually in remission! I called my parents and Ross and cried each time I said the words. The three beautiful words we've all been waiting so long to hear. I'm so thankful, so grateful to be here in this moment, to have made it through to the other end.

Now because this drug is so new and my health history is so complicated, I'm not out of the woods yet. The plan is to continue taking Keytruda once a month indefinitely and continue to scan. Of course I'm nervous that this remission won't "stick" but I'm gong to try and be as positive as possible that THIS wonder drug will be my silver bullet and one day I won't need treatment at all. If it sticks, we're no longer talking about allos, we're no longer talking about invasive treatments and long hospital stays. We're talking about having my life back. Just the very thought puts a smile on my face. The hope is that this is the new future for cancer patients--less toxic treatments that are targeted and innovative--and for better or worse, I've been a part of that journey.

I think it's time to open that bottle of champagne :)

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 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.