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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.

Monday, December 29, 2014

Dealing with Loss: Part 2

I'm having a hard time writing this post, because I think I'm still in denial. Over the past two months I've been grieving the loss of my family dog, Missy. If you have a pet, you instantly get it. If you don't have a pet, you might get it or you might not. But Missy was with us for 15 years...and to us, she was a family member, a source of love, and a constant in our house (my mother would even refer to her as my "sister"). If I close my eyes, I can still visualize her sweet face and wagging tail. The fact that she is gone forever is something I'm having a very hard time accepting.

Baby Missy. Those eyes. I can't!
Missy came into our lives the summer before my senior year in high school...she was born on my grandparents' farm in Mississippi (hence her name) when their dog gave birth while we were visiting.  My brother and I had always wanted a pet but my parents weren't into the idea, so when my mother asked us if we wanted to take home one of the brand-new puppies, we thought she had lost her mind...or was playing a cruel joke on us. But my mom had fallen in love with the puppies and we picked out tiny Missy to take on the 8-hour drive back to Charlotte. She looked like a little black lab...I lovingly called her a "mixed breed" instead of the ugly term "mutt" since we didn't know who (or what breed) her father was!

Everyone that met Missy fell in love with her...she had the sweetest demeanor and was so loving. When I went off to college I wondered if she would forget me, but when I came home for breaks, she would get so excited to see me (even peeing on the floor when I came through the door!) and I knew she remembered me.

Similar to how one might think their child is the smartest, most wonderful being on the planet...I thought Missy was the smartest, most wonderful dog on the planet. She would often run around outside with my dad or my brother, but she always knew when it was time to come home. She loved being in the center of conversation...if a group of people were standing around in my parents' house, she would come and sit right in the middle, often sitting right on someone's foot...she loved being as close as possible.

Who wouldn't love this face?

Once I moved to New York, I couldn't come home as often. But when I did, I was the one who spoiled Missy the mother would tell me not to feed her "people food" but I couldn't resist those big brown eyes and little paws as she begged for food during meals, so I always gave her a few bites.

After I was diagnosed with cancer, I read about pets who knew their owners were sick...a few even helped diagnose them! Missy would always cuddle with me when I was home and I often wondered if she knew that I was sick, if she could sense what I was going through. My mother often said how Missy would comfort her on the days she cried and worried about me, almost as if she knew how my mother felt with me being sick and so far away. When I was really sad or depressed, my mom would send me pictures of Missy saying "hi" to cheer me up.

Soaking up the sun in her favorite spot

Running in the snow

In recent years, every time I left my parents' home in Charlotte, I worried that I wouldn't see her again. But she was always so lively and personable, that despite the gray hairs that begin to appear, she didn't seem to age. I tried to remind myself that she wouldn't live forever, but you're never ready for the news that a member of your family has passed away.

I had just returned to NYC from a birthday trip to New Orleans when I called my parents to chat. My mother said she had something to tell me, and my heart dropped when she said that Missy passed away. It actually happened a few days before I left for New Orleans, but my mom didn't want to ruin my birthday, so she waited until I came back to tell me. Missy was 15 years old, which is old for a dog, but her death still seemed so sudden, so quick, so unfair. My mom said Missy was her usual fun-loving self in the days before her passing. But one day she woke up and had a stroke...she was unable to see or hear, and when my mom brought her to the vet, she passed away on her own. I felt so bad for my mom having to witness Missy leave this Earth, and yet I was also mad and sad that I wasn't there. The day after my mother told me the news, I felt such a great sense of loss, I just felt so empty as I went to work and tried to concentrate. Every time I saw a dog on the street I wanted to burst into tears. My father comforted me that day when he told me a funny story about taking Missy back to our old neighborhood (my parents moved from my childhood home in 2011) and how Missy ran right into our old house (where new people lived and had the door open!) because she remembered the house and thought she could just go inside. I laughed through my tears as I thought about how smart my little dog was (and now the tears have started again!).

Missy was determined to be a part of my bridal shoot.
I had to convince her to not sit on my dress, as
per usual, she tried to be as close as possible
While some people might say she was "just a dog," she was our dog. She loved us and we loved her so much. My mom often works from home and Missy was always by her side. My father was the one who fed her every morning and let her truly be a dog and run wild around our neighborhood. My brother and I often fought over who's dog she really was (mine, of course, duh) as we played with her when we were at home. And she loved Ross...she would run and jump on him when she saw him.

I knew the holidays would be hard...Ross and I spent Thanksgiving with his family in Chicago and we went to Charlotte for Christmas. I tried to prepare myself for it, but the second I walked in the door of my parents' house in Charlotte and didn't see Missy, I lost it. That painful feeling would hit me throughout the holidays, as I missed her falling asleep on my lab or begging for food or running to the door when the doorbell rang. The pit I felt in my stomach grew as I realized over and over again that I would never see her again.

I tried telling myself what people say when someone dies. "She's in a better place." "At least she didn't have to suffer." "God needed a (dog) angel." But it doesn't matter, I want her here on Earth with me and my family.

Doing what she loved, cuddled up on her leopard bed
2014 has been really hard year for me health wise, and losing Missy this year didn't help. Going home was always a safe haven for me, no matter how bad I was feeling, she always made me feel better. So having that hole in my heart has been so hard.

I'm hoping 2015 will present a brighter future. In terms of next steps, I decided that a stem cell transplant isn't right for me at this time. I met with the transplant team at Columbia and frankly I wasn't into it. The transplant doctor was nice, but he was very firm about me having a transplant...and then proceeded to tell me all the horrible things that could/might/maybe/probably will happen. He said that the chance of a cure was about 40% which was higher than I originally thought, but not high enough (and he also said I was at a high risk for relapse. Yet he still wanted me to do it? #fail). My initial thought after our meeting was "hell no!' Then I decided to take a step back and really think about it. I contacted other "Hodgers" to get their opinions. Many of the people I spoke with said to go with your gut. Ugh, well my gut said no, but was that the smart thing to do? I really wasn't sure. Yes, a transplant is scary as hell, but it could also be a chance at a cure. I went back and forth in my mind, trying to convince myself to do it, but not really wanting to.

In the end I met with my doctor (cancer patients usually have a main oncologist and then go to a specialist transplant doc for the transplant) and told him my feelings. I said I didn't feel confident enough in the allo process...40% didn't sound good enough, I needed better. And to my surprise he said he understood.  Over the course of his practice, he's seen the cure rate rise from 20% to 30% to 40%, so there's no reason to believe as technology gets better and research continues, that percentage will continue to grow. And he sounded super excited about all the new drugs coming out in the next year or so. Whew. I was shocked to hear him say that, I thought for sure he would say I needed to have a transplant and I needed to have one NOW (as the transplant doctor basically said). But he didn't. He said it was my choice and he got it.

So I've continued on the regimen of Bendamustine and Brentuximab and he doesn't want to scan me until February since I'm feeling well (the scanning machines expose you to radiation every time you have a scan, so while they're important to have, they are also not the safest thing in the world. I've had like 10 million scans, so that's just theory a scan could cause another cancer because of the constant radiation...what a catch 22). Doctors are leaning toward scanning less often when a treatment seems to be working. Based off of my last scan, he's confident that the treatment will continue to work, but I, of course, have my fears.

When I first started B&B I instantly felt the difference. Now I feel basically fine, but I have pain in my chest every once and a while and that always scares me. Plus I have itching here and there which is another Hodgkins symptom. It's awful to have these thoughts, the evil voice in my head says that the drugs have stopped working and the cancer is growing. But at this point, what do I know? I've had 5 years of pains and symptoms and ups and downs and it's become nearly impossible to predict what a scan will reveal. So I will just pray for the best. Here's to 2015 being a good year!

My sweet, sweet dog. We love you Missy!!

Saturday, October 25, 2014

Back to old habits...but asked to make some big decisions

I'll start off by saying that I had a great scan last week...significant partial response is the official report!

I actually had a little bit of a scare when I first sat down with my doctor...the original "wet read" of the scan (the wet read is what they look at right after I have the scan, before the radiologist takes a deep dive into it) said that there was some growth in my bones. So when he said the word "growth", I just sighed and said Ok. I've been through soooo many ups and downs with this disease in the last 5 years that I wasn't even shocked. I was a little surprised to hear growth because I had been feeling much better, the night sweats and itching stopped (although I do still get scared when I have an itch or sweat at night) and I've gained weight and energy. Plus, I usually respond to a new treatment in the 1st round. But I have learned to manage my expectations and proceed cautiously with each step, so I just asked "what's next?"

Thankfully then, my nurse practitioner came in with the actual report that stated what they thought was growth in my bones was in fact residue from the last treatment...apparently if you have a scan close to a treatment, this drug can "light up" on the scan too...similar to how cancer lights up. Ugh. I've never had a scare before, but I'll take it if the actual report says that the disease decreased in all areas and things look good!

Of course, then the other shoe dropped.

My doctor brought up that he wanted me to think about an allo transplant again. I wasn't totally surprised that he brought it up because they have been trying to get my old records from my previous doctor 4 years ago, along with re-testing my brother to see what percentage of a match he is (when my brother Garrett was originally tested in 2011, he wasn't a complete match. But now, there is new evidence that a related donor who is a partial match could still have good results for an allogenic's called a "haplo transplant"). However, I still wasn't ready to have this discussion.

Me being me told my doctor that I just wanted to stick my head in the sand and not think about an allo. I wanted to continue doing these trials and new medications until I hit the miracle one that brought me to a complete remission. I know several patients that have done that and are living with remissions without doing an allo...and I want to be like them! He said that's certainly possible but technically in the medical world (despite those lucky patients) there is no known cure for the disease except for an auto or allo transplant.

It's just sooo hard. I've had a really crappy year and especially crappy summer in terms of my health, and I finally feel better and they want me to make this decision now? I find that if I feel better, I easily fall back into my old my life and forgetting about this disease. Sometimes that's good (focusing on work, hanging out with friends, starting to exercise again), sometimes it's bad (stepping on the scale everyday and worried about how quickly I'm gaining weight--I am SUCH a girl!) but overall I feel great! So the idea that someone wants me to make a life-changing decision such as to allo or not to allo is downright horrible.

Part of the reason that my doc brings this up now is that there is a new transplant team at Columbia that he is recommending. Back in 2011 when we first talked about transplant, he said the best place to go is to the Seattle Cancer Center.  I couldn't imagine leaving Ross and my life in NYC to stay in Seattle for months for a transplant, but once I visited I did feel a little better about the process...there's something about the west coast vibe that is nice and peaceful. So you would think that I would be excited about an NYC option, but here's the thing: I have MAJOR PTSD from my auto transplant in 2010. I was in the hospital for 2 weeks and almost had a nervous breakdown. Every time I think about staying in a hospital overnight I feel like I want to throw up. I can turn into such a b***h when I'm at a hospital, because the instant I step foot in there, I want to leave.

Seattle actually has an out patient program...which is part of the reason that it made the process a little less scary. Columbia's program is in patient. I wish this wasn't a big deal for me, but it is! I have a really hard time wrapping my head around another long stay in the hospital (possibly up to 4 weeks!)...especially if it doesn't work.

And that's the other issue...allos have like a 30% chance of cure and a 30% chance of death and a 40% chance of relapse. I already had a damn auto and that didn't why should I believe an allo will?? Those odds don't seem so great and unfortunately I've seen a lot of people pass away recently from complications of the allo. So that doesn't ease my fears. This sucks, it reallyyyyyy sucks. Can I please stick my head in the sand and not think about this?

Thankfully my doctor said the ball is in my court...unlike previous doctors who make me sick...he's not pressuring me either way, ultimately he said the decision is mine. So the next step (besides getting to complete remission with Bendamustine and Brentuximab) is meeting with the Columbia transplant team to find out about the program and what they would recommend for me.

And then, it's up to me. Ugh. Anyone else out there want to make this decision for me? There are some decisions in life you never feel quite "adult" enough to make, and this is definitely one of them.

Saturday, October 4, 2014

Dreaming about Cancer...or actually Hair

Last night I woke up suddenly after a very strange dream that seemed to be loosely based around the Hunger Games. For some reason I was in a line of young people who were selected to answer a question correctly or they would be stabbed (so violent, I know!) A guy behind me tried to give me the right answer as my turn arrived, but then he said, "just tell them you have cancer and you're on blood thinners and if you get stabbed, you'll bleed out!" "Oh yeah, that's right!" I said. Disturbed, I finally woke myself up!

And then I thought about the fact that, even in my dreams, I have cancer. So depressing.

Cancer doesn't always come up in my dreams, but when it does, it usually arrives in the form of my hair...because, let's be real, it always has and always will be about the hair! LOL. Shortly after I was diagnosed and all I cared about was keeping my hair, I asked a former co-worker who had just recovered from Non-Hodgkin's Lymphoma and was rocking a pixie, if she had short hair in her dreams. She laughed and said she never thought about it, but realized that she did. She didn't seem to have the hair issues that I had...she walked around our office bald before her hair started growing in, but it made me realize that even in my dreams, the "me" that I knew would be different.

From the moment I started loosing my hair, my self image became extremely fractured. I've said it before, and I'll say it again. Hair is a part of my identity (as it for many women) and loosing it, really brought the disease to life. Plus, it was the first thing someone would notice when they saw me. And I couldn't even escape in my dreams.

I started to dream about having cancer, and my dreams my hair followed my cancer journey. The day I actually lost all of my hair and pulled off the last bits of fuzz stuck to my head is seared in my memory. Yet, thankfully I seem to have blocked out every bald day after that, as I never dreamt about myself bald. I was used to seeing myself in a scarf from wrapping my hair and sleeping in a scarf in my pre-cancer days, so I would immediately switch from scarf to wig before leaving the house, never looking at my head.

And as my hair grew I started wearing hair pieces and extensions until I felt comfortable wearing my own, new, very curly hair. And that's how I appeared in my dreams as well. Now when I have dreams, I have a head full of curls...even if I'm about the get stabbed, lol.  It's so funny, I know that hair is important to me in real life, but to have it show up so vividly in my dreams makes me chuckle a bit.

As for a cancer I finally started the Revlimid that I was so excited about (while simultaneously starting a new job!) and perhaps we waited too long between drugs (damn insurance approvals) or maybe it just didn't work, but it wasn't the easy street I had hoped it would be. Even while taking the pills every day, I started to have really extreme side effects...drenching night sweats, heavy itching, and I lost almost 20 pounds in a blink of an eye. It was a really hard time and I hated seeing people look at me with sympathy in their eyes.

Since I don't usually get all 3 side effects at once, I was scared, but since I also had just started my new job (where I told my new boss that this cancer thing was totally under control and I just had to pop a pill everyday--haha--what's that saying, "if you want to make God laugh, tell him your plans"?), I was more stressed out than anything.

Thankfully, I started another treatment plan last month...the combo of Bendamustine and Brentuximab (SGN-35), two drugs I've had individually, but never together, and they seem to be working! I haven't had a scan yet, but I gained 10 pounds and the night sweats and itching have stopped, so those are all good signs. Oh yeah--and this drug combo won't make me lose my hair!

Of course, life is never easy, so there are some complications in my work schedule...these drugs are given via IV and my insurance required that they are delivered in a hospital (ugh, damn insurance again!!) so I find myself leaving work early and running to the subway much more often than I would like. I want this drug to work, but it has complicated my life a bit.

Hopefully my next update won't be 3 months later and it will be good news!

Sunday, June 22, 2014

Dealing with loss

Two weeks ago I logged into Facebook and saw the devastating news that a friend had passed away. Her name was Rebekah Furey and I call her my friend because even though we only saw each other twice in person, she has given me so much support and guidance over the past 5 years I've been dealing with cancer. Bekah is the reason I know my current doctor and his fabulous medical team and she was always a beacon of light and positivity for me and so many others. She was super smart and knew way more than I could ever know about our disease--she kept up to date on all the clinical trials and drug protocols that were available. I belong to a Facebook group for relapsed or refractory Hodgkin's lymphoma patients (another thing Bekah taught me -- refractory--a word I had never heard my old medical team use, but it's someone who is resistant to chemo or continues to relapse) and over the past few months several members have passed away. It's always disheartening to hear that another cancer patients passed away, but when I read about Bekah I immediately burst into tears.

Beautiful Bekah
She fought for 8 long years and (like me) desired to hold off on an allo transplant as long as possible. Unfortunately she was also diagnosed with MDS (Myelodysplastic Syndrome, the disease that Robin Roberts had) and an allo transplant is the only cure for that disease. So in May, Bekah made the decision to move forward with the allo in hopes of curing both the MDS and the Hodgkins. I knew she would have a tough road ahead of her, but it was a shock to learn of her passing. Although she was only 30 years old, I thought of her as the "leader" of the Facebook group, as she was the one who informed us when others were sick, spread the news when people received good scans, and even organized a card drive to send to those who needed support. Even when she was hurting herself, she was such a bright person who made everyone in the group feel supported.

Bekah's blog True Beauty Never Hurries was super informative for Hodgkin's patients and really showcased the type of person she was. She always laid out all her options and really sought to make her readers understand what she was going through.

There's this thing in the cancer community called "survivor's guilt' and while I've always assumed it was for people who achieved remission and went on to live long and happy lives, I've realized it can be for anyone who gets to live another day on this earth while someone else doesn't. Although I've experienced some horrible things during this cancer journey and I mourn for my old life, because so many things will never be the same, there are people who have had it much worse. And while I do feel guilty that I look so healthy and have had a relatively easy time with most treatments, with each passing of a fellow Hodgkins warrior, I can't help but get scared and wonder when my time will be. I have seen so many young people with so much life to live pass away from this awful disease, that I can't help but think when my turn will be. Once again, I think "why me?" why am I still here, alive, living a fairly normal life? Is it only a matter of time before cancer takes me too?

Last night I spent a few hours reading Bekah's blog and because she was so close with so many warriors, she often posted links to their blogs. So I clicked on the links, only to find out that so many of them have also passed away. It's devastating and scares me to my core to think that one day someone could write a post on my blog that I passed away. Part of me wants to know where I will be a year from now, 5 years from now, but part of me doesn't want to know. So much can happen with this disease and everyone's body is different.

As for me, since April I've been in a holding pattern. My insurance company didn't want to approve Revlimid and made my medical team jump through hoops to get it approved. So I have been suffering with the side effects of the disease without a new treatment. The worst is the constant itching and drenching night sweats every night. I never had the itching side effect when I was first diagnosed, so this has been so frustrating. Literally, my entire body itches and I want to jump out of my skin. And then the night sweats wake me up every night, leave my sheets soaked and make me feel disgusting every morning. Needless to say, I haven't been sleeping very well. Thankfully a few weeks ago it was finally approved, and I just started taking the meds, so hopefully it stops these side effects soon!

I have thought about Bekah a lot over the past week and continue to be in denial that she no longer walks this earth. I can't justify her death or make sense of it at all, and I can only imagine how her sweet family feels. Life is not's something I was told at a young age, but find to be true more and more.

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!