My Cancer Story

Written on July 28, 2018 for Summit Quest’s “Voices Over Cancer” Annual Publication

How can I fit a three year journey on to these pages? I thought that as the days, months, and years went by that talking about my cancer journey would get easier. It never does.

In April 2015, I was finishing my last semester of graduate school at the University of Georgia. It was a whirlwind. I was so excited to finally be graduating. A few finals, some papers, and then walking across that stage! Not so fast, though.

I made an appointment with my doctor at the University Health Center after noticing some bumps in my neck that had been there for a few months. After some blood work and a physical examination, he came back into the room looking concerned. He said it could be anything from an infection to lymphoma. Lymphoma? Like cancer? Whoa. It just got real.

We went into high gear. I had turned 26 at the beginning of April so I had a month to find insurance before I was removed from my parents’ insurance plan. On top of trying to finish my degree and the road to diagnosis, I was also on a time crunch to find insurance coverage. I am so grateful that the Affordable Care Act had put a restriction on covering patients with pre-existing conditions. Otherwise, I would not have been so lucky.

After the blood work, biopsies, and tests, my initial consultation with my first oncologist led to an official diagnosis on April 28, 2015. “You have cancer.” It was Stage 3 Hodgkin’s Disease to be exact. They told me not to worry because blood cancers were the easiest ones to treat. The team assured me that I would be cancer free after six months of chemotherapy. Six months? That’s doable. I walked across the stage at graduation on May 8 and began chemotherapy on May 13.

Fast forward three years.

That six month timeline was a lie. I had failed the first line of treatment for Hodgkin’s. I failed the second line of treatment. I failed salvage treatment. My doctors were at a loss. My parents didn’t understand. Why was it that other Hodgkin’s patients were in remission after six months of treatment but I’m still here three years later with a team of doctors who had no idea what the next step was?

Year 2. After keeping me alive with an experimental immunotherapy drug, Brentuximab, my team decided to move forward with a stem cell transplant using my own cells to try to reboot my immune system. Long story short, it didn’t work. I immediately relapsed and the cancer had metastasized to my bones. I had two weeks of spinal radiation and went back on Brentuximab until they could figure out what to do.

Year 3. Yes, it took them almost a year before they decided on my next course of treatment. The Brentuximab could keep the cancer under control, but it would not get rid of it in the long run. I started another round of chemotherapy that is typically used for non-Hodgkin’s Lymphoma and then I was placed on a clinical trial after that. A few months later, I was finally declared in remission on February 8, 2018.

Having such an aggressive form of Hodgkin’s, my doctors wanted to make sure it was never going to come back. So it was time for another stem cell transplant. This time around, I needed a donor. Being a minority, we knew it’d be tough to find a donor through the bone marrow registry. I only have one sister so there was only a 25% chance that she would be a match. With today’s medical advancements though, we didn’t need a full match. We finally lucked out and got some good news. My sister was a perfect match!

After pre-transplant conditioning of high dose chemotherapy and full body radiation, we were ready for transplant #2. My new birthday landed on March 1, 2018. I stayed in the hospital for a month before I was discharged for my 100 days of post-transplant isolation.

Although I am a few months out from the transplant and still in remission, the treatment continues. Brentuximab has now been approved by the FDA as a first line of treatment for Hodgkin’s patients. I’d like to think that I played a role in that. I will be receiving Brentuximab infusions for the next year, as long as the side effects don’t get too bad. I am still fighting with fatigue, nausea, vomiting, neuropathy, insomnia, unstable weight loss and gain, chronic pain, hand tremors and graft versus host disease.

There are good days and bad days. You just never know which it will be until you wake up in the morning. I have been on this rollercoaster for so long. Now I know what everyone meant when they said you have to find your new normal. I have spent a long time mourning the person I used to be. As a young adult cancer survivor, I have faced some unique challenges from trying to graduate while on the road to a diagnosis, trying to find employment, trying to find insurance, and even dating, like a “normal” 20-something year old should be doing during this time in her life.

The road has been longer than expected. I’ve met some great people along the way. I’ve lost some great people along the way. The only thing that got me through it all these years was knowing that whatever I had to go through would be one less thing for the next patient to endure.

Honestly, I am not one of those people who is happy to have had this experience. Yes, I did learn a lot. But if I could get those beautiful years of being young in my twenties back, I would want to live it cancer-free, without the doctor’s visits, hospitalization, chemotherapy, radiation. I wouldn’t wish this experience on anyone.

That is the reality of living with cancer. As for who I am now, I am still trying to figure that piece out. Being in remission isn’t as lovely as people may want it to be. Every cough, every swollen lymph node, every painful movement, even a runny nose, triggers fear and worry. Like one of my fellow survivors said the other night in our support group, “We were fighting to beat the cancer. Now we are fighting to stay in remission.”

~SL

The Reality of Remission

Today is my 9-month remission anniversary. I haven’t written much because it has been a really frustrating time. It still feels like nothing has changed. To be honest, the only thing that probably has changed is that I no longer have evidence of disease in my body (no tumors). Everything else has either stayed the same or gotten worse. I don’t mean to sound negative, but that is the reality of remission. At the end of the day, I know that I am way better off because I am still alive with a roof over my head, food in my belly, clothes on my back, and a large support system of family, friends, and my amazing fiance. 

So this is the real deal with remission. It’s going to take a while, so read on if you dare… or if you care.

Yeah, it’s great. No more cancer! So now what? Let’s start with side effects. Everyone is familiar with chemotherapy and radiation side effects. There’s nausea, vomiting, bone pain, muscle pain, chemo brain, fatigue, weakness, hair loss, weight fluctuation, appetite loss, changes in taste, weakened immune system, etc.

But now that I’m in remission…

I still have all of those side effects, with the exception of hair loss and appetite loss. My hair is growing back, but it is super curly and I don’t know what’s happening. I just look crazy. My doctors still have me on a high dose of steroids, which has increased my bloating and appetite. I have typical steroid-induced “moon face” and I can’t stop eating. I wish I liked fruits and vegetables more. I have really been struggling with how I’ve changed physically so I literally holed myself up in my house for a couple months. I canceled all of my social engagements because I just don’t feel comfortable being seen. It’s hard to look in the mirror and not even recognize yourself anymore.

Nausea and vomiting. It is random, just as before. I wake up some mornings and I feel so sick. Sometimes it hits me at night and I can’t go to bed. The day before my sister’s wedding, I threw up four times. There were some days when the need to vomit would hit me so quickly that I would just run outside to my backyard and projectile vomit off the deck. That’s gross. Don’t worry, I made sure to aim at a corner of the yard where no one goes, not even the pups. I just have emergency stashes of vomit bags everywhere now. Don’t leave home without one!

Pain and weakness. I am in pain all the time and no one knows why. Most days, it’s just an achy soreness from muscle pain. But when that bone pain kicks in and you can’t do anything about it, those are the ER days. Then again, all they do is drug you up and tell you your x-rays look normal. So all I can do is sit at home and ice myself up until I am all numb. I don’t know what happened to my legs, but there was a couple months where I could barely walk before I felt like collapsing. I’ve started cancer rehab with a physical therapist to work on all of this but I am still a fall risk. I’ve been on so many painkillers because they can’t figure out the root of the problem. I think I contribute to 90% of this country’s opioid problem. Oxycodone, oxycontin, fentanyl, dilaudid – you name it, I’ve got it. Oh, but the doctor said to just take a Claritin. Thanks.

Chemo brain is so real. I used to have such a great memory. Now, I will tell you the same story three times a day. Justin has learned to cope with this. You may as well, too. I have to write everything down. I have so many lists and journals. But, I have a hard time keeping up with those too because… I forget about them! Or where I put them.

Fatigue is probably the biggest complaint you will hear about from the majority of survivors. It takes at least 3x as much energy for me to do something as it did before. Then, I get tired so much quicker. I’m currently participating in a UNC Chapel Hill research study to see if I can get over this or at least figure out how to manage it. Of course, one of the best things you can do to combat fatigue is to stay active. What a predicament.

My immune system is still building up since I am still post-transplant. I have been sick for two weeks. Normally, this cold would probably have been gone after a few days. There is no amount of DayQuil, NyQuil, Sudafed, hot tea or soup that will help me if I have no immune system to back it up. If I get the flu, that could be hospital time. So please, get your flu shot. 

Not only do I still have these lovely side effects, but I have all these brand new post-transplant side effects! Most notably, my graft vs. host disease (GVHD). I feel like I talk about this all the time, but people still don’t know what I’m talking about. GVHD is basically your body rejecting the donor cells. A little GVHD is good because it means that your body is able to fight back and protect itself from something it finds foreign. It can affect any organ of the body, but generally begins with the skin. I have GVHD in my skin, eyes, mouth, and a little bit in my GI tract. It could be worse. The skin GVHD is most irritating of them all. Not only is it very visible, but it’s like a combination of having psoriasis and shingles. The solution? Steroids! But, I have been on steroids for so long now that they basically have no effect now. Why am I still on them? That is pretty much my only option until we can find a medication that my insurance will cover without me having to pay $6K out of pocket. Isn’t healthcare in America just the best?

The GVHD in my eyes and mouth just dry me out. It’s more manageable than the skin. It explains why you’ll see me blinking more than usual and for long periods of time. It also explains why I’m constantly applying ChapStick or Aquaphor everywhere. The GVHD of my GI just gives me a lot of heartburn and acid reflux.

One of the most hindering side effects are my hand tremors. Some days are worse than others. It’s another reason I haven’t been writing as much because it is so difficult to type sometimes. At least I can talk to my phone. Thanks, Google. It just gets really frustrating when you can’t hold up your own utensils to eat. Sometimes I have to use my left hand to stabilize my right hand and quickly shovel food into my mouth while leaning very closely to the table. I just fling my food everywhere and people look at me like I’m crazy because on the outside, I look fine. This is why I don’t go out in public!

Neuropathy is another fun, new side effect. You know that tingly feeling you get when your legs are going numb? That’s me all the time. It gets really bad in my hands and my feet to the point where I either can’t feel them anymore or they cramp up so badly that I could fall or drop whatever I’m holding. 

Those are just physical side effects. I can’t even get started on the mental side effects. There is always the fear of relapse or a secondary cancer. I find myself constantly checking for swollen lymph nodes. Scanxiety is probably even worse because you’re hoping they are still clear. My last PET scan a month ago came back clear. Phew. And then, just trying to find a new normal. When I think everything has calmed down for a bit and I can start putting some pieces of my life together, something happens and it’s back to square one.

I know everyone has their fair share of problems so I try not to complain too much to anyone, except my doctors and Justin. I know these side effects are just something I have to accept because they’re going to be with me for the long haul. I know survivors who are decades into remission and still dealing with all of the same issues. I was only diagnosed three and a half years ago. It seems like a long time ago, but it’s nothing compared to the rest of your life. So I’m just rolling with the punches and reminding myself everyday of all the things I am grateful for.

I wrote this post so many times over these nine months of remission, but was never able to get through it. I wrote this post partially to vent my frustrations. But, most of all, I want people to realize that remission is not the same experience for all survivors. For me, cancer is not a chapter of my book. Now, it’s an ongoing theme.

It’s never over. Not until we have a cure.

~SL

Long Story

I don’t write anymore. Not because I don’t want to but because every time I think about what to write, it just becomes sad and frustrating.

To clear things up, this is what has been happening cancer-wise:

I have been declared in remission on February 8. Yes, I am in remission. Am I happy about it? Yes and no. Remission brings on a whole new set of worries and changes to adjust to. Remission doesn’t mean treatments and doctor’s appointments are over. I still had my stem cell transplant after remission on March 1. I stayed in the hospital for a solid month. Then, I had the typical 100-day post-transplant isolation. Remission doesn’t mean I can do all the things I used to  be able to do. Remission doesn’t mean you’re done with taking a million medications everyday and dealing with all these unknown side effects. I still get nauseous. I’m still in pain. My legs are so weak, I can barely walk on my own. I’m so tired, all the time. Just putting away dishes makes me so exhausted. And why do we cook standing up? Can I get a chair for my stove? Seriously. Or an on call masseuse? I feel so useless all the time.

The biggest fear is reoccurrence. I’m only in remission. I am not cured, and I’m not sure that day will ever come. So can I really cross off #76 on the bucket list? I don’t feel like I can just yet. When I get sick and I have a cough, I wonder. When I have a sharp pain in my spine, I wonder. I find myself unconsciously checking my lymph nodes around my neck and underarms.

My original Winship transplant oncologist left the practice. I was the last patient he sent to transplant before leaving. So my new transplant oncologist sucks. Since I’ve been assigned to her in March, I’ve only seen her twice. The first time was a 2 minute introduction. She never came to see me in the hospital or check in on any of my follow ups. She changed my treatment schedule without notifying me. I showed up to the clinic, had my blood drawn and port accessed. I was sitting in the chemo chair and given pre-meds (Tylenol and Benadryl). That’s when the nurse told me that I wasn’t supposed to get treatment that day. They just sent me home after giving me drowsy meds. Thanks, Emory.

I’m currently on what the cancer community calls maintenance treatment since my Hodgkins was so aggressive. I’m done with chemo, radiation, etc. My maintenance drug, brentuximab, is an immunotherapy treatment, which I was on before. My doctor wants to do 12 treatments, once every four weeks. That’s another YEAR of treatment. However, if the side effects get too bad, they’ll reduce the dose or stop the treatments. It’s just a precaution to make sure everything is gone.

My skin GVHD (graft vs. host disease) has now been found to be chronic. I have a bunch of red spots all over my body. It looks like I’m a leper. At least the ones on my face have faded pretty nicely. But, my face! I’ve been on high does steroids because of my GVHD. Now, I have moon face. It’s so swollen, puffy, and round. I look horrible. My hair is growing back nicely though. Hopefully, I’ll have a good amount by October for my sister’s wedding. I’m glad it’s only skin GVHD though. GI GVHD sucked and I didn’t even have that bad of a bout with it so I can’t imagine having it chronically.

The side effects of all the meds I’m on are getting crazy. I started taking something for the GVHD and that triggered some side effect. They prescribed me some other medication for those side effects. Those meds give you new side effects, so they continue to prescribe more medication for that. Along with the nausea, pain, and fatigue, my body has become so weak. I can barely lift anything. I can barely walk. My hands won’t stop shaking. Even my voice is shaking. My legs and feet are so tingly, I can barely feel them sometimes. I can’t hold utensils or write. Even typing is difficult. So many typos. Don’t ask me to write anything or fill out any forms. Some days, I wake up and I feel alright. Some days, I just want to lay in bed all day. You just never know. I wish the side effects were more predictable. This too shall pass.

Ughhhh so that’s what’s going on with that. Non-cancer news:

Wedding planning has been going very smoothly. I guess planning 3 national sorority conventions gave me some experience. We’ve secured the venue, catering, planner, floral designer, photographer, videographer, DJ, photo booth, hair and makeup, and wedding gown. I guess losing your job, living in the hospital, and being in isolation for 100 days really has its perks. Since most of the big things are finished, I’m going to take a break to focus on my sister’s wedding coming up in October!

I am going stir crazy not being able to work. Usually I would Cricut something, but my hands are so shaky. I can’t place the vinyl with this hand tremors. Now, I’m trying to find some local nonprofits to get connected with. There are no resources for young adult cancer survivors in Northwest Georgia. Maybe because there are no young adult cancer survivors here, let alone young adults in general. There are a lot of cancer resources here, but they’re geared toward older cancer survivors. And again, my life revolves around cancer now.

I suppose that’s all. It’s so sad how my cancer life updates are longer. It’s probably because there’s more to complain about.

Now for my rant.

I’ve been thinking about this with the political atmosphere lately. Then, Independence Day came. Then, I had a really good discussion with my fellow MPA alum. All over the news, all over social media, you can’t not see it. Everyone is sharing stories, their opinions. There are so many sides to hear from. Everything is getting distorted and I feel like the public is more confused than ever. To really stay up to date, you have to scour several reputable news sources to really figure out my own opinions.

Honestly, I don’t care who you like, who you don’t like, what articles you post from tabloid websites. Do you as long as you exercise your right to vote as well. The right to vote is not something that everyone has, yet we don’t take advantage of it. We are so lucky. This is your voice in a country of millions. Your voice, your choice. And not just federal elections every four years. Yes, that is a good start, but think about it. Do you see the President everyday? No. If you don’t like something, can you call up the President? No. If you can though, let me know.

Local elections are where it’s at! Everything is local! Thanks for teaching me that, EP! Your local representatives are there for a reason. They are the ones that have to represent the needs of their constituency. Their job is to listen to you and your concerns. If they don’t, vote them out. If they do, vote for them to stay. JUST GO VOTE! Don’t make anymore excuses. This is your civic duty. Employers are required to give you time to go vote. Don’t blame it on your crappy boss. Early voting is literally weeks and weeks long, even held on weekends. Why is it that when I go to vote in a local election, the room is empty!? I went to vote and there were maybe three other people there. I was masked up, barely walking, hands so shaky I couldn’t fill out my forms. WHAT IS YOUR EXCUSE?! This has become such a pet peeve of mine. It’s a shame seeing people throw away such an amazing right that we have in this beautiful country of ours.

The End. Bye!

~SL

P.S. It’s not completely done yet, but check it out: www.justinandstephenie.com.

Living Like a Ghost…

… while the world passes her by.

That’s a quote from a book called, “Marrow” by Elizabeth Lesser. My sister asked me to read it a while back and I’m just now getting to it. The book is about two sisters who are doing a bone marrow transplant. So this is probably a bad time to be reading it. But, what else have I got to do? Other than planning my sister’s bachelorette and my wedding.

Ah! Sounds so crazy that I’m planning my wedding. But, if you really know me, than you know that I’ve already planned everything out. So it’s actually not that much work for me.

I know I haven’t updated in so long. Honestly, writing everything down means confronting my thoughts. That’s a danger zone. However, here in the hospital, there’s nothing else to do. I’ve had a lot of time to think here. I hate that. But, here is what’s been going on.

Justin and I are engaged! I told him that I didn’t want to get married until I was in remission. I vainly want my own hair for my wedding. I went to a radiation consultation. When the radiation oncologist looked up my last scan, he told me that I was in remission and there was no sign of disease. My transplant oncologist hadn’t gone over the results with me yet, so it took me by surprise.

I wasn’t happy about it though. I always dreamed of the day that I would hear those words. When I finally did, I felt scared. Cancer is never gone. It will always be in my head, my thoughts. When I feel horrible or something hurts or I cough, I can trace it back to my disease. What about when I get sick now? Is it cancer? Is it back? When I feel so fatigued that I can’t get out of bed, is it cancer? Is it back? My fellow survivors tell me that this feeling will go away in a few years. I hope so.

Anyway, back to the good part. I found out I was in remission on a Thursday. Justin left work early on Friday to spend some time at a local jeweler. When he got home, I was playing on my phone. He said, “Can you put your phone down?” I really thought I was in trouble, like I did something wrong. But, he just got down on one knee and said, “You told me to wait until you were in remission.” He asked me to spend the rest of my life with him and I said, “Yes!” Of course, he would have been stuck with me even if he didn’t ask.

I spent most of February getting as much time as I could with him and the dogs at home. I knew getting a transplant meant a long hospital stay. I love my house. I love my pups. It hurts so much to be away from all of that and Justin for almost four months.

My transplant was originally scheduled for February 27. My doctor pushed it back a day because the team wanted to change what kind of high dose chemotherapy I was going to get before my transplant. For those who are wondering, I had to do the transplant despite being in remission because there could be some more tiny, active cells that can’t be seen on a PET scan. We want to make sure everything is gone for good. My transplant oncologist informed me that my heart was too weak to take the chemotherapy they originally wanted to use.

To make a long story short, I had my tri-fusion catheter placed and I started the transplant process with total body irradiation (TBI). I had 5 sessions over the first three days. I was on the radiation table for what felt like forever, but I think each session was only about 20-30 minutes. It made me so tired. I would just fall asleep while laying there on my side. They would tape my shoulder to the board behind me so I wouldn’t move when I fell asleep. They played Justin Timberlake at my request. I love his new album and you should too.

After the radiation, I had four days of high dose chemotherapy. Then, a day of rest. The next day, my sister went in to get her central line placed to get the stem cells from her blood stream. She had to give herself Neupogen injections for a week before the the transplant. It was to make her bone marrow make more white blood cells. She said she had never felt that kind of pain in your bones. Initially, they said she didn’t produce enough stem cells so they pushed the transplant back another day. That night that I was supposed to get the transplant, they called to tell her that they were mistaken and they actually did get the four million cells that she needed to make for the transplant.

We finally had the transplant on March 1. That’s an easy day to remember. The nurses even come in with morraccas (spell check?) and sing happy birthday to you. Since they’re basically resetting my entire immune system, it’s like I’m a newborn. This transplant went better than my first one. I didn’t vomit the whole time they were transfusing the cells. I did have nausea issues for a couple days afterwards before they were able to get the medications right to control it.

I feel like I’ve been in the hospital for so long. I think it’s been ten days… I really have lost track of everything. I thought today was Wednesday. I can’t believe the transplant was only a week ago. It feels like ages. I can feel my body breaking down. I’m 28 with the body of an 80 year old woman. I can barely make it across the hall to grab snacks from the visitor’s lounge. Every movement hurts, even as I type. I can’t even wear my engagement ring! Well, maybe I can now since I’m done with TBI. Justin got me a silicone ring to wear, but I miss my real ring.

I still have no appetite. I get weighed every morning and it just keeps getting lower and lower. I have cravings, but that doesn’t actually make me eat. My mouth has been so dry. I have to do these saliva substitutes so that my mouth won’t be as dry. All of these little things that we do every single day are so hard for me to do now.

I am on day +7 from the transplant. They say that +7 to +16 is your “basement period” where your immune system is basically zero. I feel so dead, literally living like a ghost. All of my energy is gone. It’s taken me an hour to get this far in my writing. That’s another reason why I don’t update as much anymore. My hands have a tremor, too.

This is what happens when you’re in remission. It never ends.

I wanted to write more, but I’m so tired. I’ll try to update more often since I have so much time on my hands. Prayers, good vibes, and any other positive energy much appreciated. Also, a big thank you to everyone who has come to see me so far. I know Emory is a trek for a lot of people. It makes the days go by faster.

I love you all so much.

~SL (future SP <3)

Mind. Body. Soul.

I haven’t updated in six months because things have been somewhat uneventful. I feel that the quickest way to recap what has been going on is by separating it into the following three categories: mind, body, and soul.

Mind: Since I have has so many issues with my latest treatment, I went on medical leave from work in September. After three months, I still wasn’t 100% ready to go back to work full time. Unfortunately, my boss needs a full time person in my position so I knew the right thing to do for the integrity of the program was to resign. As I have mentioned before, I love what I do. I finally work in a position doing something I’m actually interested in and passionate about. I had a great working life and I really enjoyed what I did. When I first got that job, it felt like things were finally going my way. I hate that a lot of my satisfaction and happiness comes from working. But, now that I am unemployed again, I feel like I need something to reignite my passion. I want to find something that I will be able to do either with a flexible schedule or from home. I need to find a way to pay for COBRA insurance premiums in the meantime (will be looking into LLS copay help again, of course) or find a way to even get insurance if all these repeals go through. I have a mortgage, car payment, and a Netflix addiction (first world problems). I need to find my motivation again. I used to love doing so many things. I just have to get back into a routine without the nausea, fatigue, and pain getting in the way. I need to find something to keep increasing my knowledge. I need to find a path.

Body: I can feel my body physically getting weaker everyday. I’m getting slower and slower. I have less and less energy but I need more energy to do the same daily tasks. In the last month, I think I have had one morning where I actually felt well rested and energized for the day when I got out of bed in the morning. I get so much sleep, but I never feel fully rested. It gets so hard to get out of bed, especially the colder it gets. The days that I have the energy to get out of the house, I feel exhausted the next day. It’s like I need a 24-hour recovery period from any activity. Just walking through the grocery store or Walmart tires me out. I’m so happy my house doesn’t have stairs. I haven’t had any extreme pain recently. I did have another short stint in the hospital again for extreme vomiting. I just couldn’t stop throwing up the entire day. That was about when my FMLA began. Since that hospital stay, my side effects have been manageable.

**GOOD NEWS –> I did get a PET scan about a month ago and I got the results from my oncologist at my last treatment. There’s basically no sign of disease left in my neck, chest, abdomen, and pelvis except for one node that is only a few millimeters in diameter. So we know the treatment is working. My doctor is trying to decide now whether or not to do another round of treatment or go straight to transplant. It’s looking like we’ll be doing another round of treatment unless I hear from him before January 3rd. But, he’s back home in the Middle East right now so… doubt it.

Soul: I feel like the light in my soul is slightly dim at the moment. I love my life. I couldn’t be more thankful for everyone in it and even strangers who have shown their support for me. It really amazes me everyday that Justin hasn’t complained about anything because I have definitely been slacking around the house despite my lack of a job. My parents have checked in on me everyday since I got released from the hospital. We had a nice Christmas with the three of us at my house. It was the first Christmas without my grandma and, unfortunately, the end of our traditional annual family Christmas card. My sister was also unable to come home for Christmas since she was working. It’s another change to adjust to, but the holidays will never be the same.

I’ve had a lot of good times with my friends these few months with some people even making the big trek to the mountains to see me. I had a very relaxing getaway with my line sisters to Chattanooga. I feel so grateful for being able to attend my friend’s wedding. I remember being in isolation and everything the year I had my transplant and I missed three weddings. I’m glad that I was able to make this one for one of my dear sorority sisters and the first wedding with Justin as my +1. I just wanted to end the year with something more to look forward to. I also didn’t want to end another year going through treatment. Although, I will hand it to the WInship volunteers for bringing Santa around the clinic and singing Christmas carols. That was a fun day at treatment. I wanted to end the year on a high note. I usually look forward to making a recap video at the end of the year to review all the memories, but I just don’t feel as excited this year. Like I said, I just need a little boost. Something to pick me up and motivate me to get going again.

Again, thanks to everyone who has kept in touch with me despite my lack of updates. I will try to be more consistent in 2018.

~SL

Pause

Bad news. My PET results were not what we had expected. I was supposed to see my transplant doctor on July 3. But, the results were so bad that he just decided to call me to discuss them. The lymph nodes in my stomach are enlarged again and they seem to be very active on the PET scan. So we can’t go through with the transplant just yet.

He wants to do two cycles of another chemotherapy regimen of Gemzar and Bendamustine. I don’t know how long that will take. I think I may lose my hair again. He has to discuss the plan with my regular oncologist to see when to start up the new treatment, etc. I guess this explains why I’ve been having so much abdominal pain and I haven’t had an appetite.

Since the end of April, I’ve probably been to the ER ten times. I spent a week in the hospital. Don’t tell my parents! They’ll overreact and make me move in with them or something. I feel like I’m just poisoning my body with more and more drugs and nothing is working. It’s really frustrating. Every time I get a little glimpse of good news, it’s followed with something worse.

I don’t mean to sound pessimistic or negative, but Hodgkins is supposed to be relatively easy to cure. But, somehow mine is so stubborn that nothing is working. I think we should all prepare ourselves for the worst case scenario. I’ve accepted the fact that I may die sooner than I’d like. It’s not that I’m giving up, but I’m just being realistic here and looking at the statistics. I’m so tired. I wish I could just take a break and come back. Could we just put all of this on pause for a little bit so that I can breathe a little easier? Just for one day. That would be a dream.

I’d like to be cremated. No need for me to take up space in the ground. Put my ashes into a firework and let me light up the night sky over the ocean. Play “Dog Days Are Over” by Florence and the Machine at my celebration of life. No black clothing. Do NOT play “If I Die Young.” So cliche. I think those are my only requests that I can think of so far. I’m just putting this information out there because I want you all to be prepared. Better to know what to do.

In other news, Northside Hospital chose me as one of 4 survivors to represent them at their cancer survivor celebration at the Atlanta Braves game this past Saturday. I got to be in front of the pack during the pre-game survivor parade around the field. Then, I got to go onto the field during the special presentation. They had me on the big screen with my name and everything! It was pretty cool.

My 10 year high school reunion was this past weekend. I couldn’t make it but they gave me the 10 year superlative of “Most Likely to Kick Cancer’s Ass.” That was pretty sweet of them.

My sister came to visit this past weekend too. We didn’t do anything too exciting, but she got to see my house and where I live. She was able to see me at the Braves game too. It was a short trip, but well worth the time. We had fun.

I have my first physical therapy appointment today. I had my consult last week. It should help me with my pain and keeping my strength up. I hope it helps.

This was a quick post. Slightly depressing, but realistic. I promised to keep everyone in the loop so that’s what’s going on.

Maybe my next post will be a little more upbeat.

~SL

Give Me Strength

Today has been by far the worst day of this 2+ year battle with cancer. I have been struggling with extreme side effects from this pre-transplant treatment of Rituxan and Revlimid. I may have mentioned before, but I’ll repeat myself for those who haven’t read my recent(ish) posts. Rituxan is an infusion that I get once a month. Revlimid is a chemo pill that I take for 21 days straight with one week off in between cycles. It’s not a typical treatment for Hodgkin’s patients so there’s not much research about the side effects specifically for Hodgkin’s.

I have been in so much pain. I came home from work one day unable to walk or move at all. I refused to go to the hospital so I just took as many painkillers as a could and went to bed. But now, I wake up in the middle of the night crying because everything hurts so much. My first ER visit within this month was because I woke up in the middle of the night in excruciating pain. It felt like someone was crushing all of the bones in my legs. I couldn’t walk at all. Justin had to carry me to the car basically and immediately get a wheelchair when we got to the ER. Of course, no one at the hospital knew what to do. My history is complicated so that’s understandable. He called my oncologist’s office to talk to the on-call doctor. She said to call when they open the next day to get an emergency appointment. They gave me more medications and discharged me.

I had already told her my legs had been hurting for a while now but she just said it was a side effect of the new chemo and it would get better after my body got used to it. There was just some hardening on my L 1 vertebrae from radiation.

When I got to their office the next morning, no one knew why. She had me get an MRI to see if there was something they were missing. But, it came back fine. So we just kept going with the treatment. The pain just got worse and worse. Then, they ordered a PET scan to check if the cancer had spread.

At my next infusion, the LPN said that my PET results were good but not much else. I told her I was still having pain. My white blood cell count also came back very low. I was still able to get my Rituxan infusion, but she said to take an extra off week for the Revlimid.

Just filling the Revlimid was a pain. You have to be registered with Celgene, the only company that makes the drug. 21 pills costs around $30,000. I had to call my mail order pharmacy with only 30 minutes to spare to get my pills in time after a runaround with authorization codes anyway. I finally got my 20 mg pills scheduled for delivery in time for my next cycle. But since my oncologist decided to change my dosage to 10 mg, I have to go through the entire process again. My LPN sent the prescription to a Publix pharmacy nowhere near where I live. When I got that corrected, they called to tell me that they’re not part of the Celgene program so they can’t dispense the medication anyway. I called Celgene and they’re not even sure the insurance company will pay for this one because I just got it filled and they can’t take medications back.

Last night, I woke up again in pain. This time it was all in my back, pelvis, stomach, and sides. I had tightness in my chest. I threw up twice. It didn’t feel right at all. So I woke up Justin to go to the ER. They did a chest x-ray and a CT. Everything came back fine. They gave me some potassium, prescribed me some more pain medications and anti-nausea medications and discharged me. I decided to go to work because I was just going to a training today. I was struggling to stay awake. I wish I could tattoo my forehead with, “Please don’t judge me. I have cancer.”

I feel like a giant burden on everyone: my family, my friends, Kelsey, Justin. I feel like people are tired of me complaining about cancer. It’s so hard. I know I’m saying I’m tired all the time, but this is just too much. Just waking up in the morning is such a challenge. I feel like I’m not myself anymore. I can’t do any of the things I used to love. I can barely walk. I try to stay positive and not allow it to affect my work and relationships, but it’s so hard. I just cried so much today.

What kind of life is this? How do people do this with kids? Why won’t the doctors just listen to my complaints the first time? I feel like they’re not listening to me. I don’t want to do this anymore. I want to live a normal life. Even after this is all over, there’s so much more that could happen. It’s hard not to think about. This will never end for me. I just want to live my life.

People keep calling me a hero. I’m not a hero. I’m not a fighter. I’m just trying to hold on. I’ve accepted that I may not make it. I hope other people will too. I’m not saying that I’m giving up. But, sometimes there are other plans in your future. But, I will keep going. I know that the more I endure means less for someone else.

Two years. I have had cancer for two years when my first oncologist told me it would take 6 months to cure. I want this to be over so badly. I want my life back. It’s getting harder and harder to put a smile on every day. I just need some good news that’s not immediately followed by bad news. I need something. I need anything. I can’t live like this anymore. It’s so hard. I just couldn’t be happy today.

“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

~SL

Spring Awakening

So it’s been quite a while since my last post. A lot of people have been asking me about it. I have been exhausted lately, but that’s nothing new. As this journey goes on, I feel like it gets harder and harder to write about. It seems like every time I get a bit of good news, it doesn’t last long. But, let’s see what’s happened since December.

We found out that my sister is a perfect match for my stem cell transplant! There was only a 25% chance that she would be a perfect match because… genetics. So we were all really surprised about that.

I started my new treatment of Rituxan and Revlimid. Rituxan is an infusion that I get every 4 weeks. It takes a while to infuse because the rates have to be slowly increased over every 30 minutes. My first treatment took a little over 4 hours. It’s a lot rougher than the brentuximab. The side effects are still the same. Nausea, fatigue, etc. It’s just a little more this time around.

The Revlimid is a daily chemo pill. I take it for 21 days and then I’m off for a week. It’s mostly been used in non-hodgkins patients so the side effects for hodgkins aren’t really known. But, I’m sure they’re similar.

I developed a really bad cough after I started this treatment. It is a side effect of the Revlimid. When I went to see my transplant doctor this past Monday, he sent me to radiology for some chest x-rays. It turns out that I have pneumonia. So now I’m just stuck at home resting.

Right before I started this new treatment, I got word that my grandmother had a very serious stroke. Justin and I flew to New York the next day. They took her off life support that Saturday around 3:30 PM. Justin and I weren’t going to land until Saturday night at 11:15 PM. The doctor told my mother that my grandma wouldn’t make it until then. We finally landed and I heard from my cousin that my grandma was still hanging on. They said she was waiting to see me. My uncle said the day before she had the stroke, she was talking about how she was excited for me to visit in April and how she wanted to meet Justin. I guess she hung on long enough to see us. She finally passed on Sunday afternoon, despite the doctor saying she would only last a few hours after they removed the ventilator. We held her funeral and burial on Tuesday.

 

She has been ready to go for a while. We all knew it was coming. I’m glad she could finally be at peace now. But, I’ll miss her so much. It was nice to be around family. There’s so many new babies and everyone finally got to meet Justin. I think he was a big hit. I’m sure grandma would have loved him too.

Justin and I moved into our new home in February. It’s been great. We’ve had a few people over here and there. We’ve still got some organizing and unpacking to do. But, it definitely feels like home already. Our pups love the backyard and they get to run around a lot more. Our neighborhood is nice and quiet. We’re having an official housewarming in a couple weeks. I only have pictures I took at our inspection back in December.

Other than that, things have pretty much been the same. I’m just trying to take it easy and rest as much as I can. Things are still moving. I’m just getting frustrated with all the treatment and everything. It gets tiring. So that’s all… we’ll see how long it takes for another update. Thanks for checking in!

~SL

Do You Remember?

I’ve been very reluctant to write anything lately. I have been in this fight for nearly a year and eight months now. I’m tired. I’m done. I also lost my username/password for a little bit. But, I remembered it!

These past couple months have been an emotional rollercoaster for me. But, like I always do, I just put a smile on my face and laugh it off. Honestly, I don’t know how much longer I can do that for. I feel like everyone is over it. I’m tired and everyone else is tired of me talking about it. Do you remember? Remember the beginning? 20 months ago. It’s a long time to pass. A long time for people to forget. Day 598 is just as tough as day 1.

I had a great turnout for my speech at the Atlanta Light the Night Walk back in October. I spoke to 20,000(ish) people about my journey. I had a great team and we raised over $3,000. I had a CT scan and the results were actually good this time around. All my tumors had shrunk as opposed to my previous scans that had mixed responses. I’d never gotten good scan results before. It finally felt like something was going right.

Team Remedy for Remedi 2016

 

I spent a nice Thanksgiving in Indiana with Justin and his family. I got to shoot a bow and arrow for the first time. I had a delicious Friendsgiving and lots of fun Christmas festivities so far. Justin and I picked out my first real, live Christmas tree. We made our first Christmas card. If I asked for your address and you were reluctant to give it to me, you missed out.

 

First time shooting!

 

Our REAL Christmas tree!

 

Christmas party with the gang.

Despite my hesitation, the few people who are still involved in my fight urged me to get a second opinion at Emory. So, I did. The doctor’s recommendations shattered my hopes a bit. But, I’m glad I went so I could hear another perspective. He had a suspicion that my cancer was still progressing even though my tumors had gotten smaller. Based on my history and how my disease progresses, it was possible that the brentuximab could be making the cells smaller, but they could still be growing at an aggressive rate. He called me a high risk patient because of my refractory lymphoma. He gave me some options that day. The first was to do some more chemo and then an allogeneic stem cell transplant with a donor. My sister has a 25% chance of being an HLA match for the donation. My parents would be a half match. The second option was to do a new drug that had little research and would ultimately eliminate any chance I would have of ever being able to do a transplant because of the increased risk of graft vs. host disease. I think there was a third option but I guess that one really didn’t seem appealing to me if I can’t remember it now. He said even with the transplant, I only have a 30% chance of remission.

Do you remember? The beginning. My first oncologist said, “If you were to get any type of cancer, this is the one you want.” He assured me that Hodgkins was highly curable and I had a 90% chance of survival. 598 days later… I am down to my last 30%. Well, I guess if you look at it, I really am beating the odds… since the odds were in favor of me surviving.

I got a PET scan because he wanted to confirm his suspicions of the aggressive activity in my cancer cells. CT scans show geography, size, the surface. PET scans show you what’s really going on inside. I went back to see him yesterday expecting a bad scan. But, to everyone’s surprise, it was relatively good. What?! How am I supposed to feel!? I’m so confused.

My PET scan showed that the activity and growth of the remaining tumors was actually a lot less than they had been previously. But, that doesn’t necessarily mean that the brentuximab is working. Again, since I am a high risk patient with a disease that does not respond typically to treatments, my current regimen could just be keeping the cancer at bay, not giving a good shot at remission or at least one that will last. So he gave me the same two options with a little bit of good news. Since my cancer cells aren’t as active as he had thought, this gives us more time to find a donor.

But, do you remember? About two or three years ago, Nina Louie was looking for a donor. But, the bone marrow donor registry lacks minority donors. Since transplant matches are dependent on your HLA match, race and ethnicity play a large role in finding a donor. Her sorority was able to get thousands and thousands of people registered, but she still couldn’t find a match through the registry. Thankfully, her life was saved by a miraculous cord blood donation and from what I gather, her and her family are doing well today. Can you imagine that though? Her doctor told her they would have to get 20,000 people registered to even have a chance at finding one match.

So here I sit, 598 days after diagnosis with a 30% chance of remission. I’m going to keep fighting until I’m at 0% (or 100%… that’d be better, right?!). I’m going to do it with a smile on my face… most days, probably not today, but most other days.  I will tell you waking up on day 598 is a lot harder than day 1. But, you can’t expect people to stick around that long, can you? You can say I’m being dramatic, but I don’t care. There is a difference. There is a bittersweet pain. I will be forever grateful for the people who have been there for me through donations, gifts, text messages, cards, food, fundraisers, hospital visits, etc. But, I will never be able to repay the ones who have been there since day 1 until day 598. Those people, and they know who they are, are my heroes.

I’ve changed a lot since I heard those three words, “You have cancer.” Part of me mourns the person I used to be. Bubbly and energetic. Always optimistic. But another part of me is happy with the way cancer has shaped my point of view. Even though I’m exhausted, I don’t let life pass me by because it could be gone in a moment. I let people know how I feel. I spread the love wherever I can because one day, I might not be able to anymore. Imagine how awful that would be.

People say the holidays are a rough time. So I hope you remember – everything you have to be thankful for. The people you love. The people who love you. If you were to die tomorrow, would you be happy with the life you’ve led? The things you’ve done? The things you’ve said? I think about that every single day.

This was a random, emotional blog post. It may not make any sense, but I think it was long overdue. I can’t leave you all without one last call to action. Give this holiday season. Even if it doesn’t help me, it will help someone. Atlanta Blood Services is in a constant platelet shortage. As some of you may recall, platelets are essential in stem cell transplants for recovery. You can also join the national bone marrow donor registry with a quick swab. Do it for me because I can’t donate myself. Do it for someone else because you could save their life. Do it for yourself because we are all capable of being heroes.

~SL

Busy September

Since Labor Day, I feel like I’ve been so busy. I spent the two weeks after we got back from Asheville packing up all of my stuff and moving it to Rome. I also had a lot to do for my parents. I think they were trying to get the most out of my unemployment before I moved out. I also tried to hang out with as many people as I could before I moved because I will probably be around less people now that I live farther away from the Metro Atlanta area.

I had my first day of work on September 16. It was just orientation. Lots of human resources stuff, going over policies, talking about insurance, etc. There were 4 of us that day, but I was the only one who was going to be working in the district office. The other 3 were also going to the clinical side of the public health department. I was the only one going into emergency preparedness (EP).

So I’ve been on the job for a week now. My first week felt really busy. Since I work in the district office, we provide support down to the county level. Our district oversees 10 counties. The only days I was in the office for the whole day were Monday and Friday. We went to Dalton, Cartersville, and somewhere else that I can’t remember. The team I work with on a regular basis is 5 people. We have the smallest department in the district, but they’re all really into food so it works out.

We have a giant EP truck. It’s a Ford F-350 Super Duty fully equipped with all the emergency sirens and lights. I eventually have to learn how to drive it… while also pulling a trailer. We’ll see how that goes since I can barely drive my Jeep.

I went to a Georgia Emergency Management and Homeland Security (GEMHSA) Area 1 meeting that had the Georgia State Patrol aviation demonstration. I went to an SNS (Strategic National Stockpile) training. Then, I went to an interstate emergency preparedness meeting between Georgia and Tennessee. Alabama was supposed to be there, but they’re pretty busy. It’s a lot of traveling, but I get to meet a lot of people. And I’ve been learning a lot! It’s crazy that I get to work in a field that I actually got my degree in and wanted to work in.

My boss is really supportive and encourages us to go out to do personal and professional development. So far, I’ve just been tagging along to everything I can so that I can learn everything about our district and meet a lot of other people in EP. My actually position is the training coordinator. So eventually I’ll be providing trainings for the district pertaining to different EP topics. I’m so glad I don’t have a job that’s just sitting behind a computer all day.

GSP Search and Rescue Aviation Demo

GSP Search and Rescue Aviation Demo

I’ve also been slowly decorating my office. Everyone knows how much I hate empty walls. I have no windows. So I have a lot of walls to decorate. Everyone in the office has been so nice and welcoming though. Sine it’s a public health office, they’re very into wellness. One of the execs even bought a bunch of bicycles and helmets for the staff to use on our wellness breaks. We’re right next to an abandoned hospital campus so there’s a lot of space to ride around and walk. There’s also Zumba classes twice a week. But, I’d probably pass out if I tried to do Zumba at this point.

Overall, it’s been going pretty well. I hope it only gets better from here!

I went to a young adult cancer meeting last weekend. A group of 5 of us met with the survivorship coordinator at Northside Hospital. We basically talked about our stories and what we liked and didn’t like about being treated at Northside. I was the only one with Hodgkin’s and who had gotten a stem cell transplant. She was very interested to hear more about my BMT experience since I told her I hated it. But, it was nice to get together with a group of young cancer survivors and just complain. The survivorship coordinator said she wants to build up a program to cater towards the unique needs of young cancer survivors. We don’t want to walk into a support group and just talk about writing wills and dying.

Young adult cancer survivors!

Young adult cancer survivors!

Other than that, I haven’t been up to much. The walk is less than two weeks away! I’m excited. I’ll be speaking at the opening ceremony this year. There’s still time to sign up for the walk!

Join our team to walk with us on October 8: https://registration.lightthenight.org/event-selected/44185/team-selected/432653

Can’t make the walk? Make a donation to our team here: http://pages.lightthenight.org/ga/Atlanta16/RemedyForRemedi

That’s all for now!

~SL