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Thursday, August 4, 2016

One Year Remission!

I cannot believe it's been one year today! Overjoyed is not even great enough of a word. It's been a long road ya'll....let's keep going!


Sunday, July 31, 2016

The Seven Year Itch

Marilyn knows the deal 
Wow....its July again and every year on July 29th I remember the day my life changed forever--I was diagnosed with cancer. July 29th is when I must force myself to remember a new "time period" of my cancer journey. First it was 1 year, than 2, than 5, than 6 and now 7. Seven years! Seven years since I first heard these words from my doctor: "I'm sorry, It's lymphoma. Now who's here to help."

If you're new to my blog and haven't had the chance to read from the beginning, I'll give you a quick recap:

In 2009, I was diagnosed with Hodgkin's lymphoma after seeing a swollen lymph node above my left collarbone. As a self-diagnosed hypochondriac (in retrospect I had good reason to be) I immediately Google'd "swollen lymph node" and focused in on the word "cancer" in a long list of causes. I had no other explicit symptoms of what we in the HL world call "B symptoms" (weight loss, night sweats, fever) but I was scared due to my above explained hypchondriac-ness. So I headed to the doctor who assured me it was probably nothing but ordered a biopsy just in case. I had the biopsy, went to get the results by myself (BIG mistake), received the diagnosis, burst into tears and discovered my cell phone didn't work (clearly I'm starring in my own horror film), called my parents (in North Carolina) from my doctor's office phone, then went back to work because I had no working cell phone and left my bright pink Manolo Blahniks at work and needed to tell my boss I had cancer, sat at my desk where a coworker innocently asked me if it was humid outside, I acted normal and held back my tears and said yeah its really humid, then I emailed my boyfriend who had just moved to Pittsburgh for business school, emailed my roommates who were both going out of town for a wedding (great timing!), walked into my boss's office and cried as I told her I had cancer, no phone, no family in town, no boyfriend in town and no roommates in town, my boss told me to take a car service home and asked if I needed to borrow a cell phone, I went home and emailed my best friend in New Jersey who brought her 6-month baby over with another friend, we played with the baby, ate ice cream and watched Confessions of a Shopaholic (which would later become my reality as I choose to buy myself everything and anything I wanted because, uh, I had cancer).

Fast forward--I started chemo, got engaged, had an auto stem cell transplant, lost my hair, got promoted at work, hair started to grow back, got married, had a gigantic blood clot a week after my honeymoon where I almost died, got a new job, continued doing chemo, chemo stopped working so I started doing clinical trials, got another new job, and then in August 2015 had my first remission!  And now here we are, seven years later. WHEW! Did you get all that???

I know. It's crazy. I can barely even believe it myself and I'm sure I missed some significant hospital stays or the time they thought I had tuberculosis instead of relapsed lymphoma (yep, you guess it, I still had lymphoma). It's one of those things where I can't even process it all at the same time because then I get really sad. I'm sad because for seven years of my life, I've been fighting my own body. Fighting the monster inside of me who wouldn't die, damnit! I'm literally fighting an invisible monster who only shows up via PET scans and CT scans. For the first few years of the fight I didn't feel a lot of the lymphoma symptoms, just the side effects of chemo, so I even wondered "am I really sick?" Or "did they confuse my labs with someone else?" And then about 2013/2014, I started to show signs of wear and tear from the disease. I lost a lot of weight, had night sweats every night, pain in my bones and constantly broke down in tears. When I look at pictures of myself at that time I see (underneath the pounds of makeup I love) that I look tired inside. Even though I'm smiling, it makes me so sad because I know how sick I was.

So "the seven year itch" usually refers to the breakdown of a relationship or marriage. But in this case I would really, I mean reallyyyyyy like to breakup with cancer. Sidenote - its also relevant because itching is a big side effect from Hodgkin's that I also experienced. My seven-year relationship with cancer has been filled with huge ups and downs and it's not over yet.

This week I had my 18th infusion of Keytruda, the miracle drug that brought me my first remission. My doctor is thrilled and said he's in no rush to scan me. But I'm scared. I worry that the cancer is back every time I experience pain in my chest or an itch on my leg (the itching has to be in my head, because as I'm typing this I'm starting to feel itchy!). Sometimes the fear is overwhelming and all-consuming. But then I'll have a moment of clarity where I think, "if its back, we'll deal with it." I frankly don't have any other choice! I desperately want to move on, out of this relationship and into a relationship with Remission--forever. But I've been in this relationship long enough to know that nothing is guaranteed.

And so July 29th will forever be that life-changing day--even if no one else knows the significance. This year I went to work as usual, laughed with my coworkers, met a friend for drinks and dinner, came home to my husband and then went to sleep. I thought about the significance of the day and then I moved on. In seven more years my dream is to look back on my relationship with cancer as a simple blip on this thing we call life.

Sunday, June 19, 2016

Belated Post! National Cancer Survivors Day

I've been super busy with work, family, friends, and living a normal life! (albeit with monthly infusions of Keytruda) that my poor blog has become neglected. Ugh, must do better!

But I did want to write a short (belated) post that for National Cancer Survivors Day on Sunday, June 5th, I was honored to write a short guest post on the official website for National Cancer Survivors Day.

It's amazing that I get to call myself a survivor and after being in this battle for so long (and in remission for almost 11 months!!) that it was a true joy to be able to celebrate this day in a different way than the past 6 years. It's funny, I used to think about cancer every single day. Several times a day--sometimes so often that I would get overwhelmed, choked up and desperately wanted to escape my body and my mind to get away from it. And now...I don't. I don't know when it happened, but my priorities shifted and cancer went from being an everyday thing to a sometime thing.

Now I definitely do still think about cancer, especially when I'm forced to go in to the doctor for an infusion or appointment. And I do still have the prospect of a future PET scan which will tell if this remission is still holding out, so occasionally those thoughts keep me up at night. But, the crying fits and anxiety (about cancer at least, lol) are much less in the past year then they have been during this entire journey. And that? Is amazing.

I'm still concerned about the future and what these treatments have done to my body and the long-lasting effects. But I just try and take it one day at a time. Two close family members were recently diagnosed with breast cancer and I tried to provide perspective to both of them...not the "stay strong" BS that I hate, but the advice to just "do you"...basically you have to live your best life (hey Oprah!) and only you can decide what that means and how you'll get there.

Cheers to all the survivors out there!!

Tuesday, January 26, 2016

Challenge. Learn. Inspire. Master. Believe. CLIMB!

Hi, my name is Morgan and I'm a scaredy cat. I've never been the adventurous type of person who dreams of jumping out of a plane, swimming with sharks or participating in a triathlon. I admire those people and wish I had just a fraction of their spirit, but just the thought of those things makes my heart beat faster. In fact, I've noticed that since my cancer diagnosis I've become more scared--of everything--but especially adventurous activities. This can be really frustrating because I thought after you beat cancer you're supposed to be able to do anything right? Well sometimes I let my fear get in the way.

So I'm proud to say that I conquered a fear last week when I went ziplining at Climb Works Keana Farms in Hawaii, where CLIMB serves as an acronym: Challenge. Learn. Inspire. Master. Believe. Ross and I visited my BFF Danielle, her husband Kwame, and their two little girls in Oahu, where they have been stationed for a few months (Kwame is a Major in the army). We decided to go ziplining for Danielle's birthday and she and I were both a little freaked out at the idea of flying through the trees.

But we decided to rally and make it a memorable trip--and I am sooo happy that I did! As we were putting on our gear, I didn't waste any time telling the instructors how scared I was, but they were amazing at making us all feel comfortable and cheering us on every step of the way. There were 8 different ziplines and I was shocked how much fun it was. The ziplines were dual lines so I was able to zip side by side with both Ross and Danielle, so that added a layer of comfort. The scariest part was standing on the platform, prepping for the jump. I would feel myself getting super nervous as I stood on the edge but as soon as I jumped off, it was an incredible feeling to be hundreds of feet in the air!

Dani and I flying through the trees!

Throwing up the "shaka" hand symbol afterwards

Can you feel my excitement??!
The first few lines I was too nervous to look around, I just wanted to concentrate on holding on, but as the day went on, I was able to relax a bit and take in all the gorgeous scenery. The last 2 lines we even jumped off backwards and went upside down (well I almost made it upside down, I was kinda horizontal)...if you had told me that I would go ziplining backwards, I would have never believed it!

When we were done, our instructors shared their #AlwaysClimb motto and how they strive to push people out of their comfort zone and show how you can overcome challenges. Then they told our group how proud they were and what a great job we did. I'll admit, at that point I was grinning like a fool and getting a little misty-eyed. I thought about everything I've been through these past 6 years and how hard it's been...and yet I'm still here, still pushing forward, taking it one day at a time.

I saw my doctor the week before I left for Hawaii and he said that as long as my bloodwork continues to look good, we can hold off a scan until August. August! That would make 1 year since remission. It's both exciting and scary that he thinks we can wait that long. It's such a catch 22 because scans keep you in check but they also create sooo much anxiety. When that scan day comes, I'm going to do my best to remember the #AlwaysClimb motto, remember the fact that I can overcome any challenge, and remember the feeling of flying through the trees.

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.