Cancer and Cookies

My advice as an elevator pitch:

Cancer fucking sucks, but you don’t!!!! This cancer journey is about you. Keep that in mind. Balance will be the key. Knowledge is power; take notes, ask questions, and be curious. You don’t have to do this alone. Teamwork makes the dream work. Saying yes to or asking for help is not shameful but empowering. It’s okay to delegate; that’s what an excellent leader does. People will freely offer advice and opinions; you don’t have to listen. Solid boundaries are essential to emotional and mental well-being. Cancer is not just a physical fight; it’s a mental one, too. You got this!!

My advice, reader’s digest version:

My advice is a compilation of 15 years of experience, love, what I wish would have been shared with me, friends’ experiences, research, and observation. I may make a joke or two, but it’s not because I don’t take cancer seriously; it’s because I need to laugh; you get tired of crying. Cancer can be a million different things, and I am only going to touch upon a few. Join me, grab a coffee, tea, and cookies, and sit with me for a few minutes. Imagine we are at the kitchen table, which is just covered with everyday stuff. We are wearing our most stylish workout clothes without intending to work out. Rocking messy hair and that “I haven’t showered in a couple of days” look. Please sit back and listen with an open mind.

First and foremost, I am sorry you are dealing with cancer. Words cannot express my empathy. I promise not to lie or sugarcoat things unless you ask me to—a little sugar occasionally doesn’t hurt. Cancer can be isolating because it can dominate your life. It’s challenging to watch your life freeze while watching everyone else live their life and move forward. Focusing on your health is essential, but include activities that meet your mental health needs. You will want an activity that reminds you of who you are. For example, my art makes me happy, confident, and creative. So, I had a friend set up a painting day once a week. That activity was vital because I felt more like myself at that hour than the rest of the week. I am an artist. You are more than your cancer.

It’s time to build a team, a loving, supportive team. You decide who your teammates are; some examples are family, friends, community members, and/or professionals. If you are alone, for whatever reason, it is time to build a team. Talk to a social worker or case manager and explain the situation. Social workers and/or case managers can assist you in finding groups and organizations specific to your needs. It may seem like work initially to build new relationships, but it’s worth the investment. Teamwork makes the dream work, especially when a team is invested in your well-being! You are worth the investment!

Grief and loss. It’s a big, daunting topic, just like cancer. During this journey, you are going to experience grief and loss; I am not talking about death. I am discussing the grief and loss of everyday things, such as personal appearance, life events, relationships, etc. Feelings of grief and loss can occur when you lose anything or have a perception of loss. I wish someone had told me that because I didn’t have the words to describe my feelings when I was first diagnosed. Just receiving a diagnosis of cancer can stir feelings of grief and loss. Grief and loss during cancer is a different experience for everyone. Whatever you are feeling is normal. They are your feelings.

The best advice is to embrace your feelings, feel your feelings (know you will be okay), and let your emotions move along. When feelings linger and impact your ability to engage in everyday activities, consider contacting a professional. Not because you have done anything wrong; sometimes we need support moving our feelings along. Hiding from your feelings isn’t practical; they will find a way to be heard. Share your feelings and be heard. Find an outlet that supports you, such as journaling or expressive arts. Express yourself.

You are the boss. It may feel out of control or chaotic, but you make the final decisions. It can feel like doctors take over, but they don’t do it with ill intention because they care. Their job is to care for you to the best of their ability. If you feel like someone is stepping on your toes, even out of love, you can regain your power by reminding yourself that you are the boss. Ask to pause; it can be for a minute or a day—taking time to process information or do additional research before deciding something is entirely reasonable. A social worker, advocate, case manager, or trusted loved one can help you make decisions. However, you make the final decisions, and if it doesn’t feel that way, gently remind everyone you are the patient.

You don’t get the final say if you are a minor or if you aren’t your own guardian, but that doesn’t mean you should remain silent. We all have a voice. It may only be a whisper at first, but shout as loud as you can. It’s your body; having a say matters. Share your opinions, concerns, thoughts, ideas, and what you want the end goal to be. If you need help amplifying your voice, contact your social worker, case manager, and/or a close friend. There is power in numbers.

Grab a notebook and dedicate it to your questions and the information you find specific to your cancer diagnosis. The notebook can be digital if you prefer; several applications help compile health data and leave space for journaling. I like old-fashioned paper notebooks because there aren’t any rules on how to use them and I don’t have to worry about charging my pencil. Questions can pop up anytime, at the dinner table or while lying down, so keep your notebook close and write them down. Keeping your questions and thoughts in one place is a way to prepare for your next doctor’s appointment. At doctors’ appointments, you are presented with a lot of information, some of it life-changing; bring someone with you who is willing to take good notes so you can actively listen. Or record the appointment with your phone or another device. Ask permission first—most doctors are very understanding and permit it. Knowledge is power!

Education is critical and empowering. Say yes to the classes, research your diagnosis, and ask questions. For example, I attended a workshop called “Chemo Side Effects 101.” It prepared me for what potential side effects I might experience while going through chemotherapy. Those tips and tricks were beneficial! Remember, you don’t have to know everything. Invite a good friend and ask them to support you with your research so you don’t go down the Google rabbit hole. It’s a balance. Education is power, but you don’t have to pursue a doctorate in oncology or hematology while battling cancer. (You know you have gone down that hole before…)

Don’t forget to ask questions about fertility. Ask, do you need to freeze eggs or sperm? Ask if any of the treatments will impact your fertility permanently. We are so quick to jump into treatment plans that we forget to pause and ask. It’s a large life domain that doctors often don’t address when treating cancer because their goal is to extinguish the cancer, not ensure you can have children later. If these questions make you uncomfortable, bring a friend or ask the social worker to help you address the topic. You don’t have to do it alone.

Simply put, whole-body health is the key to surviving cancer. If you don’t invest in yourself, your body won’t perform. Garbage in, garbage out. My stats teacher gave me this advice, and I live by it. If you eat unhealthy foods, you won’t feel well, and your body won’t have the nutrients it needs to fight cancer. Avoid surrounding yourself with negative messages, watching nothing but depressing movies, and talking to people who embody Eeyore; you are going to start to feel depressed.

If I don’t move, I become a couch potato quickly! By trial and error, I have learned that going from a couch potato to actually moving around hurts my body. It is better for me to just keep moving. As my doctors like to say, “If you don’t move it, you will lose it.” It goes back to basic science: an object in motion tends to stay in motion, and an object at rest tends to stay at rest. It is essential to me to feed my mind and nourish my body. I may not be running a 5k anytime soon, but I can move around my apartment independently, which feels like a race to me and a big accomplishment. I am just patiently waiting for my trophy, heck, I’ll settle for a sticker!

Cancer means change. It impacts you spiritually, physically, mentally, and financially. This isn’t a fright tactic, but just a heads-up. I was surprised that an illness could impact me in so many ways. I learned how to be flexible and go with the flow. Initially, I was far from flexible, but now I am a regular Gumby. Change isn’t good or bad; it just is. Yes, I sound like a fortune cookie, but that little white paper typically offers some wisdom.

Think about quality of life and what that looks like for you. That is a big question, but you can break it down. What do you want your everyday life to look like? Answering this question helped me decide what medications and/or treatments I wanted to utilize. I shared with my medical team that for me, it is essential for my quality of life that I don’t spend all day in bed because I am sleepy, exhausted, or overmedicated. This gave my medical team a starting point. For example; I take pain medication but still experience pain. On a scale of one to ten, I experience about a 5. This is my choice. By trial and error we discovered that if the doctors medicated me to feel less pain, I was sleepy and just laid in bed. My medical team stayed away, as best possible, from medications and treatments where drowsiness was a significant side effect. This required a lot of conversation and frank discussion. How much discomfort do I want to experience to be fully present in the here and now? I am sure the answer to this question will change but for now, we have found a balance that works. I also was able to take medication to help me stay awake. I fought hard for this because I felt like while I could, I wanted to live my best life. These are personal choices and circumstances and it can look differently for everyone. What I am willing to do might not be comfortable for the next person. That is why communication with your medical team is key. This is your journey, let them know what works for you.

Say yes to the dress, but maybe not to Aunt Bertha. Almost everyone will have advice or a story they will want to share. Some advice is helpful, but not all advice is equal. For example, being told you will be cured if you stand on your head on a Tuesday evening during a full moon while touching your nose with your left hand is probably not the best advice. First, that advice needs to be backed by scientific data. Second, that advice is more of a fairy tale. If cancer was that easy to cure, wouldn’t everyone be doing it? Listen to your gut, trust yourself. Boundaries are key.

Fun—you can quickly forget it. In times of stress, we often hyper-focus on the problem and nothing else. We need to remember to have fun. It is okay to have fun. Fun is the best medicine, especially with a side of laughter. Spontaneous fun may be tricky during treatment, but scheduled fun may be more manageable. Ask friends and family to help you organize something. Let your fun be about you. Engage in an activity that brings your heart joy. It can be something minor, like painting a picture, or going for a car ride, or something more adventurous, like a trip to the beach or a small hike. What you consider fun, such as organizing stamps in alphabetical order, might differ from everyone’s idea of fun, but that doesn’t matter. This journey is about you.

I am sure you have had enough of my fortune cookie advice. I hope that you find something that helps or something that you can pass along. Remember, cancer sucks, but you don’t! You got this!