Thank You

It’s hard for me to believe this day has finally come; tomorrow morning I am having surgery to remove my port! It is a day that I have been looking forward to since this all began. I will leave the hospital with no more physical ties to this horrible disease. I have so many people to thank for getting me through this nightmare.

However, I can’t possibly begin to thank everyone. I will start with Jackie and my mom, who, this past August, sat stoically watching the 24 inches of my hair being chopped as short as it could go, before any of the treatments started. While I braced myself quietly by focusing on watching the scissors and hid my own devastation, their silent tears said everything that day, and I was lucky to have those two people there to support me; two people who would become essential supporters during my journey in the upcoming ominous months.

The list of people that have truly shown kindness, even when it wasn’t comfortable or easy, dropping any inhibitions and just really showing up, is beyond what I ever could have expected. These people have taught me how love is meant to be.

To my lifelong best friends Katie, Maddie, Jackie, and Katherine for being sisters to me; I know I will never be without them. To the friends that I have made at William & Mary, who came to visit, sent care packages and letters, and always kept me updated on their lives and distracted me with their humor; I can’t believe we’ve only known each other for a year. I absolutely cannot wait to get back to school to see you all. To my mother’s friends, Jana, Diane, Cathy, Melissa, Lisa, Michelle, and Jackie for treating me like a sister, daughter, and friend all rolled into one. Their constant vigilance through their presence, lunches and dinners, and little surprises have lifted me up when I needed it. To my cousins Gillian and Kiera who have both taken me under their wing, each in their own way. To my aunt Sherry and “aunt” Terry for checking on me almost daily through my mom and aunt Karen.

To my Dad and my brother who provide a backbone and a quiet understanding, never asking anything from me yet giving me anything I’ve asked. To my aunt Karen, fellow survivor, who has held my hand, and my mother’s, every single step of the way. She has understood every emotion and has given me strength and constant support from the very beginning. She is, without doubt, my second mother.

To my mom who hugged me tightly on July 29th and told me through her tears (and mine) that I would never be alone through any of this. I knew she meant every word and truly she’s never left my side. She slept in a hospital chair overnight, laid in bed with me while I cried, walked with me every single day for the last 8 months to keep me active and distracted. She sat with me every other week, as poisons were pumped into my chest port, organizing my medical information and always carrying (in her Kate Spade tote of course) anything I could ever need. She, carefully and quietly, drove to and from Annapolis and swallowed her fears while I slept, usually gray and pale. She never forgot a medication or injection or preventive treatment. My mom carefully packed and overnighted my hair to the women in Oregon who lovingly made a replica wig with my very own hair. She carefully balanced my diet and nutrition and contacted my trainer in early August to give him free reign, keeping me well and as strong as I could be. She gave me constant reassurance, and during my worst days, she gave me purpose to persevere. She taught me right from the start that we all leave a legacy and I must decide what my legacy would be from this horrible twist. She knew I could be strong, graceful, and inspirational. She reminds me every day, but it is almost impossible to put into words the thank you that she deserves.

How can I possibly thank the doctors who literally saved my life; from Dr. Jackson, the ENT who originally found the mass, to Dr. Maurice Smith who hugged me, prayed, and carefully removed biopsy samples, millimeters from my lungs and heart, and readied me for the next step, to Dr. Bromer who gently took me through two horrible weeks of fertility treatments and saved a ridiculous amount of healthy eggs for a future, to Dr. Weng, who, from the very start, attacked this disease as though I was his own daughter. He has researched, collaborated, and fought for the absolute best treatment to ensure a long healthy life with few side effects. He’s given me hope and confidence that I will be well. I can never truly thank him enough. I have been blessed.

As I wait for surgery in the morning, I think about how I’ve lived like a shadow of myself this past year and now look toward the days ahead as though I am walking back into my life again. I’ve been so afraid to hope, to plan, to love my life. As I leave the past behind, I feel alive, strong, and filled with love. No one knows what the future holds, but I know how very grateful I am to be given one.

Advertisements

World Cancer Day 2017

world-cancer-dayTomorrow, we recognize February 4th as World Cancer Day, a day that unites the entire global population in the fight against cancer. On this day, patients, families, friends, healthcare professionals, and organizations around the world acknowledge the need for cancer prevention, cancer research, and cancer support. World Cancer Day’s motto is “We can. I can.”, suggesting that both individually and collectively, we can reduce the cancer burden. This lifelong burden, from diagnoses until death, affects more than just the patient. As a witness to this burden, I can empathize with anyone even remotely impacted by cancer both directly and indirectly. Collectively, we can inspire and take action, support survivors and patients, challenge perceptions that come with cancer, and improve access to cancer care for those who are less fortunate but still require treatment. There is no question that once cancer is introduced into a life, that life will never be the same. Whether you are diagnosed or someone close to you is diagnosed, life becomes more precious and more fragile.

In my experience, one of the hardest parts of this whole ordeal has been appearing as though everything is okay. Everything is not okay. People want to hear that you are doing well, not that you often feel as though your fate, at the age of 19, is in the hands of your (previously-trusted) immune system, or the negligible self-esteem that you once possessed has practically fizzled away, just as every hair (and eyelash and eyebrow) has fallen from your head. Every morning when I wake up, I see a strong person who actively tries to make their day productive, but I also see someone who has had practically everything taken away from them. Six months ago, someone else moved into my skin and took the light that was in my eyes; I found myself smiling and laughing less often, which could be because of fatigue, but I know that it was because of this overwhelming burden. The juvenile durability, that I have mentioned before, had been stripped from me, even before my 20th birthday. I have been forced to mature in a way that I wasn’t ready for, and now I carry this burden that requires responsibility, poise, and tenacity.

However, the physical difference, although extremely noticeable to me, is insignificant when I think of how lucky I am to have the lasting, firm relationships that have proven resilient through this time. One problem that follows cancer patients worldwide is a certain stigma that puts them under an undesired perception, affecting their own self-perception, causing guilt or shame. Yes, I have lost some friendships during this time and directly after my diagnosis, but I have recognized that it is in fact not me that pushes people away, it is cancer. Understanding the enormity of cancer is challenging to everyone, but there is something to say about people who embrace the situation and adapt. People don’t know how to react or what to say, and I have found that a lot of people just avoid the situation altogether, creating an emotional and physical distance that is unfortunate, but somewhat understandable.

I had a realization the other day: as much as I hated my body for causing me so much pain physically, mentally, and emotionally, I am proud of my body for being so resilient. I have worked hard on keeping myself healthy for 19 years, and until about six months ago, I thought I was indestructible. Yes, the fact that I am a cancer survivor may hint that I am somewhat durable, given that I have survived a fatal disease, but this durability did not come without an unknown, inconspicuous strength that I possess.

As an update on my treatments and my recovery, my hair has begun to grow back, however short, and my eyelashes and eyebrows have also shown regrowth. My body has been through hell and back, but I feel practically normal now with mild fatigue. My final final treatment is scheduled for February 14th (Happy Valentine’s Day to me !!!!), and removal of my port will be a few weeks after. I will not be getting another scan for a few months, so I have some time to breathe; however, the looming issue of recurrence will always be present. After months of feeling victimized by cancer, I feel like a survivor and I’m certainly ready to get my life, my strength, and my happiness back. The past few months have been difficult to say the least, and it is not over yet, but I would have been an absolute nut case without my family and friends. Everything I could ever need can be given to me thanks to the hard work and unconditional love from my parents and family. There is no way someone can go through cancer alone. Every person in my life has a specific role in my recovery and I am thankful for their presence in any way. Tomorrow, on World Cancer Day, I urge you to make a conscious effort to realize your importance to cancer patients and your role in the continuation of their lives.

Hello 2017

A few days ago, Friday, December 30th, marked my ninth treatment. Instead of the entire toxic mix which I no longer need, I will be receiving 4 more treatments of the antibody drug Brentuximab at the infusion center. I will also be given the anti-allergic-reaction drug Benadryl and the steroid Dexamethasone, at each treatment. By now, my closest friends and family have learned my 8th treatment turned out not to be my last. I can’t say it was easy hearing the recommendation to continue 4 more treatments, and I wish I could say that a positive outlook always helps me focus on the good news that my second scan was clear of cancer. However, continuing any drugs made me a bit wary that this process will never be completely finished. Sometimes (more often than not) I wonder, why me, why can’t this just be finished. My doctors believe the added insurance of 4 more treatments of the non-chemotherapy drug, Brentuximab, better protects me from relapse. I am grateful for their vigilance and I realize that because I’ve tolerated the first 8 full treatments of AVD plus A (Adcetris, trade name for Brentuximab) so well, and in spite of the fact both my 2 month and 4 month scans have shown no cancer, they believe finishing the original protocol of 12 treatments is added insurance that they would recommend for their own daughter. I know it’s the right thing to do, but it’s definitely not easy.

Not many teenagers can understand the impact of cancer. What is it like to be crushed by the realization that your life will never be the same? What is it like to realize the days of feeling indestructible and free from the fear of your own mortality are gone? It’s tough, and as much as my best friends have given me love and support, they can’t know. And because I love them, I really don’t want them to know, with their whole lives in front of them. Once you know your life is precious and potentially temporary, you are definitely changed.

While I have faith in being cured and living a long happy life, I know it will be hard earned. My mother tells me that my sadness is grief of losing my ‘naive innocence’ that life is reliable and fair and I genuinely believe that. Once I set my old way of thinking aside, I will live with new purpose and clarity. While I wasn’t able to drink champagne this new year, I did propose a toast. Here’s to an insurance policy and a hard earned new life. Goodbye 2016, and hello 2017.

I’m DONE

Today, with my parents and my brother Erich, I received my 8th and final chemotherapy treatment. This time it was my turn to ring the giant bell and have the entire staff at the infusion center sing to me. As much as I am grateful to them for their kindness and care, I hope I never have to see them again, at least not in that setting! So many people have asked how I will celebrate, but for me, it’s not quite the end and I’m not going to push my luck. I will celebrate when they remove my mediport, the annoying tiny alien under my left collarbone. Only then will it feel like I can move on. However, I still have two more weeks of nausea and extreme fatigue and 6 days of neupogen shots to my abdomen, which causes back and knee pain. But, believing this is my final chemotherapy treatment is a good feeling and great step forward. I will have a PET scan later this month, and after receiving what I hope will be another ‘negative’ result, meaning shrinking lymph nodes and no cancerous tumors, I will have surgery to remove my mediport. I really can’t explain how much I’m looking forward to that day.

Last night, with the help of my brother and my dad, I did something I never thought I would ever have to do; I shaved my head. As difficult and shocking as it was to do it, shaving my head is a sign of hope and a promise of regrowth. I channeled my inner Britney Spears (circa 2007) and Natalie Portman from V for Vendetta and I decided that it was time. Time to get rid of the very sparse hair that remained, with the guarantee that my hair will start to grow back soon (and at all one length). Maybe it will take a month or maybe it will take two, but I want to start fresh. I’m ready for a fresh start with new growth, new life, new perspective, and new hope. Not only do I want the disease to be gone from my life, I want what remains of the poisonous chemotherapy drugs to be gone from my body. Facing the fear of shaving my head gives me adrenaline and empowerment; there’s no turning backward, only moving forward.

This next month, when the New Year comes, I will happily and eagerly welcome my new hair, my new strength, my new health and my new life.

First Annual Dylus Family ‘Flip Lymphoma the Bird’ Turkey Trot

I finished Chemo 7 yesterday, not the sort of appetizer I would’ve chosen for today’s Thanksgiving celebration, but I’m feeling pretty good! After sleeping late this morning (I’m thankful for that), my family, my best friends and their families, and I ran our own turkey trot. It was one of the best ways to start my day; a reminder of the support and love I’ve received through this battle! I have no idea why I thought it was a good idea years ago, but I’ve run in a turkey trot for the last 7 years, and I wasn’t going to skip it this year. These races tend to start obscenely early; there was no way I was going to drag myself out of bed at 7:30 AM, disrupting my sacred sleep, to run a 5k…ha… Aunt Karen, Uncle Ron and my cousin Gillian arrived two days ago, prepared for the trot with turkey hats and a full Turkey costume for Erich, seen in the pre-5k photo-shoot.

 

Some of you may already know about my new part time job (that really isn’t a job at all but an unbelievably timed gift); I started puppy sitting this week! The timing couldn’t be better since my treatments are becoming more difficult. To be completely honest, I’m beyond ready for all of this to be over. My fatigue is definitely getting harder to ignore and physical exertion leaves me winded and exhausted. I know it’s normal and expected and I like to think it’s partly a sign that the chemotherapy drugs are working hard to kill every last cancer cell. It’s harder than ever, but I’m still seeing my trainer three times a week and on the other days, going the gym for cardio workouts on the bike and rowing machine, since I have a difficult time running now. I have also added yoga three times a week and still walk 3 miles every day. All of these activities continue to help me cope with the fatigue and nausea. Lately, what bothers me more than I want to admit, is losing my hair. There’s no way to sugar coat it; this side effect feels like a total injustice and it makes me angry. I know my hair will grow back soon and it will be exciting when it does! Right now, I ‘have bigger fish to fry’ (as my family likes to say) and I guess that’s cancer’s gift of real perspective. Today especially, surrounded by family and friends wearing ridiculous turkey suits and hats, I choose to focus on how grateful I am to be so loved.

Make the Days Count

Processed with VSCO with a5 presetToday, I completed my sixth round of chemo (only two more to go!!!) with a surprise visit from Tobin, the therapy French Bulldog (modeling above). Apparently, he was having a hard day since his alarm went off at 4:30 am to go to yoga… completely understandable. His little puppy fat rolls brightened my day and it was a good omen. I didn’t want to start the day hearing that my blood counts (neutrophils) were a little lower but still high enough for the treatments scheduled. I’m still on track for my last chemo infusion to be December 8th, just in time for Christmas. (I’m so excited that I’ve already started listening to Christmas music….) After that, I’ll have another PET scan and my mediport will need to be surgically removed, but I can see the finish line.

No radiation. My oncologist, along with experts in radiation oncology including his sister in law, an international lymphoma specialist, confirmed this decision. They said new studies show that radiation may actually reduce the overall cure rate (even with proton therapy) for early, favorable Hodgkin’s patients who respond well to first line therapy. Radiation provides less than 5 percent protection from relapse, especially if the radiation site is in the chest, or the mediastinum, where my largest tumor was located, common to most Hodgkin’s patients. My relapse risk is already in the 4-5 percent range with the Brentuximab regimen that I receive.

I used to think this cancer was putting my life on hold, but ironically, I now see it as somewhat of a catalyst. It has opened my eyes to a new way of thinking, a new appreciation for my life, and a gratitude for the people and little things that make me happy. It has ignited a new curiosity in my prospective career path; after answering a question from a professor who I contacted for research opportunities, I realized that this experience has made it easier to say that my interests lie in oncology, cancer research, and palliative care research, particularly for young patients.

One of my doctors just recently said that every doctor and nurse should be a patient so they really learn and understand. She said that my experience of living through cancer is something they just can’t teach in college or medical school, that I would be a “patient first and doctor second.” I could see my illness as an interruption or I could see it as an incentive to ‘fast forward’.

I have found that young patients have different concerns than older patients; younger people need treatment that anticipates living 60, 70, even 80 more years. Most young cancer survivors will go on to being practically anything they want to be, living a life as though they never had to endure this nightmare; some may become Major League Baseball players who win the World Series, like Hodgkin’s survivor first baseman Anthony Rizzo (go cubbies !!!), professional football and hockey players, doctors, nurses, teachers, mothers, and fathers. I am not interested in laying on the sofa, as easy as that would be. I have a life to get back to; surviving cancer gives me purpose and perspective to make the most of that life.

Intermission into Remission

Processed with VSCO with hb2 presetI think about the day I was diagnosed, and how devastating that moment was. My mother has always said that, someday, I will look back on this and see how fortunate I have been; that time will clearly show what I’ve gained and not lost. I already know I have been incredibly fortunate to be surrounded by so many genuine, loving people.

Today is a day that I have been anxiously awaiting. It’s October 24th, 2016 and I can say that I am CANCER FREE! Last Friday, I received my second PET scan. This scan is administered for re-staging my lymphoma after four chemotherapy treatments and determine the next step; how many more treatments I will have to undergo to permanently destroy the cancer cells. After a grueling weekend of anxiously waiting the results, my oncologist called this morning to assure me that my scan was NEGATIVE and that I am considered to be in remission. My scan was clear of the pre-existing tumors and free of any new disease. I cannot express the overwhelming sense of relief that I experienced from that phone call. Now I know, with evidence, that these awful treatments are working, and working well. Inside, I have felt a roller coaster of emotions, afraid to believe the ‘likely prognosis’.  When life throws something horrible, random, and illogical at you, the ‘reliable’ can no longer be relied upon. The way I see it, there was a less than ½ percent chance that I would have this disease in the first place, so I can’t trust logic. Although, I finally feel as though something has gone right. After the call, my mom hugged me tightly and we both sobbed. The relief was like a thousand pounds being lifted from both of us. We both immediately started calling and texting family and friends who had been eagerly waiting and texting us all weekend for updates.

I am considered to be in remission. This news means that I will undergo four more chemotherapy treatments, ending in early December, rather than enduring eight more, which would have continued into early February. There is still the possibility that I will need to receive radiation after these treatments, but that is not decided yet. Luckily, a less toxic form of radiation, proton therapy, is now available in Maryland. There is only one location in our region, and it happens to be in Baltimore. This radiation pinpoints the tumor site and protects the surrounding tissues. If radiation is recommended, it will likely be this kind. Because I don’t know what type of follow up I will need after December, I will not be returning to school in the spring semester. I will also need to let my immune system regain strength.

I continue to gain strength from not only my family, but my friends, and even friends of family. They have reached out and shown their support in so many concrete ways; constantly wishing me a speedy recovery. This weekend, I received two surprise visits.

img_1712The first surprise: my entire high school cross country team showed up on our doorstep. Nineteen girls wearing matching team shirts and on the back of each shirt was my favorite quote: “if it doesn’t challenge you, it doesn’t change you”. It was such a heartwarming feeling to be an inspiration to the girls on the team, as most don’t even know me personally, only that I was team captain for three years. They follow my story anyway. I was so happy to talk with some of my former teammates, remembering long runs with them my senior year. I thought those Saturday morning Whittier hill runs were going to be the death of me…little did I know that two years later I would have something far worse to shake me. At least now, I have no hesitations attributing my senior year cross country plateau performance to a large tumor pressing on my heart…haha!

Processed with VSCO with a6 presetMy second surprise was a suspicious box about 2-1/2 feet square, bulging at the seams. It was curiously addressed to my brother but, after texting him at his apartment in DC, he insisted it was for me AND that he didn’t send it. Inside the box was a giant, 6 foot, vacuum packed teddy bear. The note attached was a giant hug from my “Brothers in the Oak”, or the Harvard Social Club where my brother was president during his college years.

Looking back on my initial diagnosis, I already feel like a different person. My outlook on life has changed drastically. My life and my health are two things that I simply cannot take for granted. Maintaining a healthy body, loving my family, and approaching every day with positivity; these things have revealed themselves as the most important facets of my life. My mother mentioned when I was very young that “happiness is a choice” and it has resonated with me to this day.