Finding Someone Who “Gets It”

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

The hardest part about having cancer as a young adult is finding someone who “gets it.” Someone who knows intimately what you are going through, someone who can relate to your struggles from their own personal experience. As much as I appreciate that my family and friends are there for me, and as much as they empathize with me, their level of support is limited to being on the sidelines, but not entirely knowing what I’m going through. Kara, one of CHOC’s child life specialists in the adolescent and young adult (AYA) treatment program, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need. Even though I had a great team of family and friends, plus everyone at CHOC who cheered me on, it was important for me to find someone who had been through the same diagnosis at the same time in their life.

When I was first diagnosed, my best friend’s mom put me in touch with a family friend of theirs, who is also college-aged and had Stage 2 Hodgkin’s. She was almost finished with her last round of chemo just as I was starting my chemo.  I cannot even express in words how helpful it has been having her there to answer questions for me and calm my fears about certain procedures or just the whole experience in general. One moment where I appreciated her support was right before one of my surgeries. I already had a PICC line (a peripherally inserted central catheter, used for long-term medications and for blood draws), but my doctors wanted to remove it and add a port. A port is a device they would insert under my skin and attach to a vein that allows medications, blood products, and nutrients to be given intravenously. I had some anxiety about the surgery and having to get poked often with the port, rather than just attaching an IV to my PICC. She reassured me that the port was more convenient and worth the extra procedure and that definitely helped me feel more comfortable going into surgery.

Although she lives across the country on the east coast, she was always only a text away for me. She was the first person I texted when I shaved my head―I needed to know how long it took to get used to the new look! And, like me, she was also treated in a pediatric hospital, so we shared a lot of the same experiences as a young adult being treated at a children’s hospital. Even now, when I’m close to being done with my own treatment and she’s a few months out from hers, seeing her back at school, healthy and back to normal, makes me so much more excited for when I get to return to school next semester.

The most important thing for me was to find people to connect with, and that’s something that I would suggest to any cancer patient. With social media being so prevalent nowadays, it is so easy to find other people out there who are going through the exact same thing you are. I joined a Facebook group of other people who have fought or are fighting Hodgkin’s, and it has been immensely helpful. Being able to unload concerns, fears, and frustrations onto a large community and have people respond with intimate understanding of your situation is very cathartic. There is a growing number of resources for young adult cancer patients that can be found online, such as Stupid Cancer, and being a part of these communities has given me a sense of belonging when I felt like I had no else to talk to.

Something that I’ve learned over the past six months is that attitude is equal to effort, and it has certainly made me feel better to make an effort to connect with others and find resources to help me through my treatment.

Learn more about AYA at CHOC

Read more from Bri:

 

The Five Stages of Dealing with a Cancer Diagnosis

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes Kids Health readers along on her look back at her journey with cancer.

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Bri Miller, a 22-year-old CHOC Children’s patient, takes readers through the five stages of a cancer diagnosis.

Hi, my name is Brianna Miller, known to my friends and family as Bri! I am a 22-year old patient at the Hyundai Cancer Institute at CHOC Children’s, being treated for Hodgkin’s Lymphoma. A month before my 21st birthday, and just before my senior year of college, I was diagnosed with cancer. To say that learning I had cancer was a shock is an understatement. Throughout the last few months of treatment I’ve had a lot of time for contemplation and for trying to make sense of my emotions concerning my journey with cancer.

You’ve probably heard about the five stages of grief, which are typically applied to people experiencing the loss of a loved one, but I found these stages to be therapeutic in learning about and coping with my diagnosis. When you are diagnosed with cancer as a young adult, you are most likely experiencing one of the biggest losses of your life to date.

State 1: Denial

As a full-time college student working two jobs and being involved in a sorority, I was very busy and frankly not worried about much other than my grades, my friends and showing up to work on time. I had no symptoms other than swollen lymph nodes in my neck, and honestly, you don’t often hear about the young adult side of cancer all that much. It took four months of testing and multiple biopsies to assign a diagnosis, but I don’t think I ever really took seriously the possibility of cancer. Seeing as how I had no painful or otherwise debilitating symptoms, finding out what was wrong with my body was pushed to the back of my mind in favor of more present issues, such as my classes, work and social life. When I was finally diagnosed, my reaction was subdued because it almost felt as if I’d known in the back of my mind for a while and had been denying the reality because I didn’t want this disruption in my life.

Stage 2: Anger

Once the reality of my diagnosis set in, a sense of anger also set in. The hardest part about being diagnosed with cancer is that there is really no one to be angry at. The cause of Hodgkin’s is still unknown, so I couldn’t be mad at myself or at anything for causing it. I carried a lot of anger with me for quite a few weeks, and this anger hasn’t quite subsided. It rises to the surface occasionally when I am having a particularly bad day, when I receive bad news about scans, or sometimes just randomly when I am lying in bed trying to fall asleep. Quite often, this anger stems from the question of “why me?” Sometimes I think this anger could be relieved if there was a definitive cause of this cancer, so that it could take away the sense of unfairness that I feel.

Stage 3: Bargaining

The bargaining stage is associated with “If only…” statements and imagining how different things might be if only you personally had done something differently. I have reflected quite a few times on my lengthy process to diagnosis. Five months passed from when my enlarged lymph nodes first popped up to the beginning of my treatment, at which point the tumor in my chest had grown to 9.3 cm. At my halfway scans, there was unexpectedly still active cancer cells in my chest, resulting in more cycles of chemo being added to my treatment plan. I sometimes wonder if things would be different if I had been diagnosed earlier. If my tumor had been smaller at the beginning of treatment, would I have responded better to my chemo? If I had been diagnosed earlier, would I have been able to start treatment earlier and been able to return to school on time, rather than having to withdraw for a semester? Of course, there’s no point in lingering on these thoughts, but these are some unanswerable questions that I can’t help but think about occasionally, and I’m sure apply to many other cancer patients.

Stage 4: Sadness and depression

When addressing this stage, it is important to distinguish between sadness and depression. Depression is pervasive and interferes with everyday activities, and recovery can require professional help. Personally, I felt a deep, deep sadness but it never crossed the threshold into depression. It’s normal to be deeply sad about a cancer diagnosis, especially as a young adult. If I start to count the number of things that I will be missing out on during my six months of treatment, I’ll definitely run out of fingers and be broken down in tears by the end of it. For me, the hardest thing to cope with is that I had to move home to California for treatment, leaving my college time that was filled with a lot of family members, most all of my friends, and my sense of home. It’s hard not to be sad when your life and everything you know is 1,500 miles away, and just like that you’ve lost all sense of normalcy. Going through treatment for cancer doesn’t help either, as it’s hard to be cheerful while being nauseous, fatigued, and in pain from any number of side effects. The most that I can do is look for something positive in everything, and know that at the end of these six months this will all be a memory. Something that has really helped me during this time and while experiencing these feelings is keeping in touch with all of my friends, even while so far away. Knowing that they are all just a quick call or Facetime away has been so reassuring. Kara, one of CHOC’s child life specialists, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need.

Stage 5: Acceptance

Acceptance by no means is defined by letting go of or losing any of the normal emotions that come with a cancer diagnosis. Acceptance, for me, simply means that you have made peace with your diagnosis and are ready to put all your energy towards fighting the disease. There came a point where I realized that constantly being angry and sad was doing nothing but making me more upset. I realized that in order to beat cancer I was going to need to be strong and accept this as my new (temporary) normal. This doesn’t mean I no longer experience those feelings of sadness, anger, and confusion, but they have become temporary moments rather than a persistent mood.

Everyone’s journey with cancer is different. Even if you are diagnosed with the same type of cancer as someone you know, your emotions, questions and concerns may be completely different, and that’s ok. Having cancer is a deeply personal experience, but that doesn’t mean you have to fight it alone. Talk to your parents, siblings, friends, doctors and nurses― they are all there to help and support you in any way they can. No matter what emotions a cancer diagnosis brings you, don’t feel alone.

Learn more about the Hyundai Cancer Institute at CHOC Children's

Read more from Bri:

  • Finding Someone Who “Gets It”
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...

 

Finding Humor in Cancer

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

If there’s one thing I’ve come to know more intimately over the last year than I did before, is that cancer makes people uncomfortable. I completely understand. It can be hard to know the right things to say, the best way to react to bad news, and how best be supportive. Along with all the bad things that accompany cancer, however, there are a lot of things that happen and you can’t help but laugh. I want people to know that it’s completely okay to find humor in cancer!

When I was first coming to grips with the impending side effects of chemo, I found that an effective way to ease my anxiety was making jokes to help make light of my situation. I’ve always been easygoing, and this developed into a sense of humor during treatment. If we’re being honest, going from having long hair to being completely bald is shocking but also can be funny! I kept hair ties on my wrist even after I had no hair and would reach for the brush just out of habit. I would often make jokes about being bald, and my friends would always redirect and reassure me that my hair would grow back. Of course, I knew that my hair would grow back, but that didn’t mean that I couldn’t have a little joke at my own expense in the meantime! Now that my hair has started to grow back, it looks kind of funky- I like to call it my “baby Orangutan” look. I know it looks funny, so someone reassuring me that it doesn’t really just makes me internally cringe. I understand the impulse to make someone feel better, but if I’m lucky, I’ll only have to do this whole cancer thing once in my life- might as well make it interesting while I do!

Of course, it’s never okay to make fun of a cancer patient’s trials or downplay their experience, but to consistently only talk to a patient about their experience in a serious tone can be quite frankly boring and frustrating. I’ve found so many great, sarcastic memes and apparel from other members in a Hodgkin lymphoma support group on Facebook and through other groups like Stupid Cancer, and they never fail to bring a smile to my face. My personal favorite was my Halloween costume last year, Charlie Brown. I figured I might as well take advantage of the baldness while I had it!

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I think it’s important for people to realize that if a cancer patient is making light of their situation or making jokes, it’s perfectly okay for them to join in too! Sometimes long hospital stays or hard chemo days can be bleak and tiring, and bringing humor into the situation can help immensely. You have to do what is best for you.

Learn more about the Hyundai Cancer Institute at CHOC Children's

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How a Bone Marrow Transplant Can Save Someone’s Life

Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. As many as seventy percent of these patients don’t have a compatible match in their family, and must hope to find an unrelated donor. You can help these patients increase their odds by joining the Be The Match Registry®, an international registry of potential matches for those seeking a bone marrow transplant. Today, meet two CHOC Children’s patients who have benefited from a bone marrow transplant.

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Emma, age 23

In the summer of 2017, I went from being a healthy 21-year-old college athlete to an acute myeloid leukemia patient in less than a week’s time. To say it happened fast is an understatement. The doctors told me I needed a bone marrow transplant as soon as possible. Dozens of my family members got tested to be a donor, but because it needed to happen quickly, we used my dad. I received his stem cells on October 3, 2017. The procedure was difficult, but my medical team and the hospital staff were incredible. The oncology floor was like a huge family made up of patients, caretakers, survivors, supporters, and many others who had been touched by cancer. Thankfully, my husband was there every step of the way. By March 2018, I was able to move back to my hometown and resume college online. I was able to reclaim my life and feel hope for my future. Right now, I’m three weeks away from the one-year mark. I feel good, and I’m so grateful for my bone marrow transplant. It gave me back my life and the best gift of all: time.

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Zaiden, age 3

I was diagnosed with B-cell acute lymphoblastic leukemia when I was 2 years old. Thankfully my parents took me to an amazing hospital, CHOC Children’s. Everyone is amazing there! I started heavy chemotherapy, and everything was going well. Unfortunately, I relapsed after nine months of treatment. It was after this I had my first bone marrow transplant, with my dad as my donor. Again, I was kind of back to my normal life when I relapsed again at the six-month mark. After this we tried Car T Cell therapy, but I again relapsed after nine months. So, in April 2018 I had my second bone marrow transplant and this time it was my sister who got to be my donor. These treatments were not easy, but I have been living my best life since then.

I am extremely lucky that I was able to be matched not once but twice with people in my family as my donors. A lot of kids are not as lucky and have to wait a long time to find a match. Because of my treatments it inspired my parents to register with Be the Match in hopes they could do the same thing for someone else that saved my life.

What it’s Like to be Treated at a Children’s Hospital as a Young Adult

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

Being diagnosed with cancer right before I turned 21, I was pretty surprised when we drove up to CHOC Children’s for an initial meeting with my oncologist. I asked my parents why we were going to a children’s hospital. In my mind, I figure that once you turned 18 and were legally considered an adult that you would have aged out of pediatrics as well. I remember sitting in the waiting room, surrounded mostly by young children, and feeling completely out of place. There were cartoons playing on the TV, tiny chairs in the waiting room and cartoon characters on the walls in the treatment rooms. I hadn’t been to my pediatrician since I left for college, so it all seemed like a flashback to when I was a child, and not like somewhere that someone my age would be treated.

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Bri Miller, a 22-year-old CHOC Children’s patient, was surprised when her treatment plan included a children’s hospital.

As unusual as it seemed at first, now that I’m done with treatment I have to admit that I 100 percent would not want to be treated anywhere other than CHOC. The decorations of little cartoon characters in the rooms at the clinic and the Disney movies always playing in the waiting rooms seem so much more bright and welcoming compared to the drab white walls and sterile waiting rooms of the non-pediatric doctors’ offices I’ve visited. During my inpatient stays, there was always something exciting happening in the hospital to encourage me to get out of my bed and take a little walk around. Oncology Prom, festivals in the second-floor lobby, special visitors in Seacrest Studios were all incentives to get out of bed and get moving. The nurses at CHOC would become more than just my caretakers; they became my friends. Since quite a few of them are fairly close to my own age, there was always something that we had in common and something to talk about.

The Adolescent and Young Adult program at CHOC is really such an amazing resource within the child life department. For my first round of chemotherapy, I had to be admitted to the hospital, and that weekend happened to be the same weekend of CHOC Prom, which was such a fun experience. Going to the dress selection and primp events and meeting former patients who are now in remission was so encouraging. Even though I was just beginning my treatment at that time, I could see how they had all gone back to having normal lives and how they’re so positively dealing with the lingering side effects of treatment. It was and still is encouraging to me, knowing that when I return to college, although it will be more challenging than before, I will be able to tackle life the same way that they have.

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After the primp event, Bri models the gown she chose to wear to the 2018 Oncology Prom.

One of my favorite parts of being treated at a children’s hospital is the other patients- the actual children. Although I am a secondary education major, I’ve always appreciated the genuine optimism and happy demeanor that young children possess. Regardless of the trials that these young oncology patients were facing, it always lifted my spirits to see them because more often than not they were toddling through the halls with the biggest smiles on their faces. In the same way that meeting former AYA patients made me excited for life after cancer, the little kids that I met or simply saw during treatment encouraged me to power through treatment. If a two-year-old or a six-year-old can go through treatment with a smile on their face, what excuse do I have to not try and make the best out of what I’ve been given?

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Brianna shares a group hug with members of her CHOC fan club, including registered nurses and child life specialists.

Receiving my treatment for cancer at a children’s hospital has enabled me to be more positive about the whole experience. Having wonderful doctors, nurses, and an incredible AYA support team has made these past six months easier and much more comforting than I ever could’ve imagined at the beginning.

Learn more about AYA at CHOC

Related posts:

  • Finding Someone Who “Gets It”
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...
  • Finding Humor in Cancer
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...
  • A Visitor’s Guide to the Hematology/Oncology Unit
    Visiting the hospital can be stressful. What should I say? Is it ok if I cry? This guide offers advice to visitors of the hematology/oncology unit.