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 Brianna:

  • The Five Stages of Dealing with a Cancer Diagnosis
    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 ...
  • Confidence and Cancer: How Cancer Changed the Way I Think
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...

 

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.

bri-miller-dealing-with-a-cancer-diagnosis
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
    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 ...
  • Confidence and Cancer: How Cancer Changed the Way I Think
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin’s 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!

bri-miller-charlie-brown-halloween

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

Related posts from Brianna:

Confidence and Cancer: How Cancer Changed the Way I Think

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 series, she takes readers along on her look back at her journey with cancer.

At my university, I am a member of the Kappa Delta sorority. One of the initiatives that most important to our sorority is the Confidence Coalition, which is exactly what it sounds like- a movement to help build confidence in girls and women. Something that drew me to this group of women during sorority recruitment was this platform of confidence because it is truly alarming the number of women who struggle with self-image, starting at such an early age. I wanted to be part of what the amazing things they were doing at the local and national level, to help women realize their worth and cultivate a healthy and positive self-image. Little did I know how much my own attitude towards confidence would change just a few years later when I was diagnosed with cancer just before my 21st birthday.

My own personal attitude towards confidence certainly changed the minute I was diagnosed with cancer. Everyone has their own personal insecurities, and even before I was diagnosed with cancer there were things I wished I could’ve changed about myself. When I was diagnosed, I immediately felt as if these insecurities were magnified because I knew that I would soon undergo some physical changes, which can be a side-effect of chemotherapy. The thought of losing my hair scared me, even more so than the actual disease that was trying to kill me because my hair was something I could see, and I couldn’t see my cancer. The hardest I ever cried during treatment was the first time I took a shower and clumps of my hair started coming out in my hands.

Cancer treatment can cause many other physical changes besides losing your hair. For me, chemo caused fatigue and completely changed my eating habits, meaning I was less active but also eating less. I’ve lost quite a bit of muscle mass and a fair amount of weight because of this. Different central line placements have left me with a few new scars. A few months after I started to lose my hair, my eyelashes and eyebrows fell out as well. These physical changes have caused me to reevaluate my own idea of confidence and the role beauty standards play in my life. Looking back, I realize that my relationships before I had cancer were based on vanity. Because of this, a fair amount of my own confidence stemmed from validation from others, which became an unhealthy cycle.

Physical changes from chemo have allowed me to flip this script, and I’ve found that my own intrinsic sense of confidence has actually increased. I had no say in getting cancer, and no say in the side effects that come with chemo, but I have the biggest gift in that I get to choose how to respond to it. Once my hair started falling out, I decided to shave it rather than prolong the inevitable. It was one of the toughest things I’ve done, but once it was over, I felt an immediate sense of relief, and I was happy that it happened on my own terms. When I go out in public, I do so with a bald head. People always stare, but as cliché as it sounds, to me it is just a physical representation of my strength. I’ve gone through a lot more than most people will endure in their whole lifetime, and it just so happens that there are some physical reminders that come with it.

Hair will eventually grow back, and scars will fade, but the personal growth I’ve made will stay with me for the rest of my life. I always felt a connection to my sorority’s platform of confidence, but it wasn’t until my own confidence was essentially shattered and rebuilt that I truly understood the importance of confidence and self-image in a woman’s life.

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

Related posts from Brianna:

  • 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 ...
  • The Five Stages of Dealing with a Cancer Diagnosis
    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 ...