22 Jul, 16

What it’s like to have cancer


Cancer is a very touchy subject. Unfortunately, you will never truly understand it, until it happens to you. This is why as a non-cancer patient, you have to tread lightly and be very careful about how you approach the subject, how you approach giving advice, especially if you’re talking about foods and therapy, because at the end of the day, you really have no idea what it’s like to be dealt our card. I’m not the same person that I was 6 months ago, prior to cancer. My world completely changed, and I ultimately turned into a different person, ultimately for the better.

After being misdiagnosed for years, I was diagnosed in February with Stage 4B Nodular Sclerosis (Classical Hodgkin’s Lymphoma). My disease ended up spreading to almost every organ in my body, and I went into respiratory failure, and almost died. Luckily, I was able to be seen by the most brilliant Lymphoma Doctor in Miami, who at that moment, saved my life. I started chemo immediately without a choice. It was start chemo immediately or die. No time to freeze my eggs, nothing. I had to leave my job, my life, and spend the majority of my time at my cancer center, which became my second home. I went through two cycles of intense chemotherapy, only to relapse after 4 cycles, and I was sent to immediate radiation, and now I’m approaching cycle 6 of chemo, with the hope of entering remission, in order to avoid a stem cell transplant.

There’s no guide book to cancer, and when I was diagnosed, I wanted to share my experience and create awareness, as well as help others, while helping myself. I wanted to create a movement, because there is really no awareness for Lymphoma, or a lot of cancers in general. I met 3 amazing healthcare professionals in the process, who touched my heart more than they will ever know. They ultimately made me a better person. They all helped me so much through this journey, and they gave me the motivation to help others, which is exactly why I felt the need to do what I am doing. One of my good friend’s has a mother who was also affected by cancer, so he has been a huge part in helping me create awareness through social media.

So what’s it like being a cancer patient? It’s like your life is a roller coaster. The rest of the world continues on, and your world stops, which is one of the hardest things to accept at first. Some days you’re sick as a dog, and you don’t know how you will ever continue on this journey and just want to collapse. Some days you completely forget how sick you actually are, until you look at your body and see that it’s covered in bruises, or you look at your burn marks from radiation, that are truly BURN marks. You look at the veins in your arms that are covered in bruises from all of the blood that is being drawn from you, sometimes even a few times a week. Any initial symptoms that you had before treatment that start occurring again, like a cough, itch, or night sweats, can turn into a panic attack that bring you to tears, thinking that your cancer is back.

Cancer and Prognosis are very touchy subjects, that unfortunately the rest of the world don’t truly understand. As a cancer patient, your cancer center is your second home. You become friends with all of the nurses and staff, and spend every week at the hospital. You meet other cancer fighters and survivors through social media, who become sort of like your “cancer army”. They get you. They get everything that you’re going through. The beginning of the week starts with getting your blood drawn, to make sure everything is okay. Then you meet with your doctor, go to chemo for a few days straight, then repeat. The highlight of your day ends up being chemotherapy and doctors visits. But as a cancer patient, you live in constant fear and anxiety, as much as you want to be positive, it’s very difficult at times. You never truly know if your chemo is working, even if your scan is totally clear. My scan was clear once, and then it became refractory. So you just don’t know. You eventually learn to live in the moment and accept the fact that you have absolutely no idea and no control over what tomorrow will bring, and you learn to be okay with it. You have no other choice than to be okay with it, or else it will consume you. Even if you’re in remission, your life is forever changed from the side effects of chemo, and the possibility that your cancer could come back, or you could potentially develop a secondary cancer. Remission does not mean that it’s over. When you have cancer, it’s never truly over.

Everything changes, and as a person, you completely change. You can no longer relate to a lot of your friends and the people in your life, simply because they just don’t get everything that you have been through, as much as they try and want to. The things that they complain about are truly “first world problems” compared to the problems that you have. Unless they had days looking in the mirror, putting their hands through their hair, and having it come out in chunks, they don’t get it. They don’t get what it’s like for your body to be so f*cked up from chemo, that you fall over constantly! and can barely walk. They don’t get what it’s like to have scanxiety, but at the same time, to be completely unbothered by the little things in life, like traffic, or someone cutting you off while driving…because when you’ve been through such hell, you blow off all of the little things in life. Everything in life is easy breezy, compared to chemotherapy and radiation.

I met someone at the beginning of my diagnosis who we call Dr. X. At the time, I thought he was SO different from me. Like actually, my total opposite. At the time, our priorities were just so different. I was a bratty little girl who got handed the cancer card and didn’t know my head from my ass, would make a joke out of everything, and had my priorities all screwed up. He was a genuinely good person, with the will to help others, and helped me so much in the process. 6 months later, I realize I relate to him, more than I relate to a lot of my friends, and after discovering who I really am, despite appearances, we are more alike than I would have ever imagined. And I feel the exact same way about all of my nurses, doctors, and healthcare professionals too.

When you have cancer, you learn to care more deeply about people, because you know that tomorrow is never promised. When you find good people, you make sure to hold on to them, and let them know. You understand how it feels to be truly sick to the point where you’re in tears because you can’t stop dry heaving from your chemo, that you learn to cherish the little things..like going on a walk with your mom, your dog, your friend. You learn that life is truly a gift, and to not sweat the small stuff. You learn that looks don’t matter at all, what matters is what kind of person you are at the end of the day, and the mental and emotional connection that you have with others. You learn that material goods and money mean absolute crap. If you don’t have your health, you have nothing. You learn to be kind, because everyone is fighting a fight that you know nothing about. You learn to truly live in the moment. You learn to be REAL, and say what you feel, and have no filter. And most importantly, you learn who really cares about you, because when you have an illness, actions speak much louder than words. This journey has at times, been the definition of hell. But the other day when I laughed as I was shaving my head due to hair loss from continuing chemo, I was finally proud of the person that I have become. I can finally say that I’m proud of who I am, because it’s someone that I have always wanted to become, and through the pain and tears of cancer, cancer ended up saving my life in a way, and making it far more meaningful. So thank you Lymphoma, you’ve essentially turned me into the person that I’ve always wanted to be.

 

Find my book “Talk Cancer To Me” available at amazon here:

  1. Tommy says:

    Hi Jess,
    I so appreciate you and the way you share your experience. My Aunt and Godmother experienced ovarian cancer. She said to me over and over again, “Tom, the time is so precious … You have no idea how precious time is.” Always wishing you well.

    With Love & Kindness,
    Tommy

  2. Steven Garrett says:

    Hi, I had a SCT in February for myelofibrosis, I’ve had my good days and bad, mostly good but it’s like you say unless you have experienced it people don’t understand what you are going through, good luck,wishing you all the best

  3. J Anneken says:

    Jess I wish you the best. I have lost so many in my family to cancer. I went into remission 4/07/07. NHL. I was stage 4. I have felt all that you have and still feeling but it sounds like you have a better handle on it. God bless and I will start including you in my prayers also. Janette

  4. Melissa says:

    This was amazing to read. Thanks for sharing 😊

  5. Mitch says:

    My wife is a 2009 stage 2 Hodgkins survivor.
    This article about immunotherapy and Hodgkins may be of interest (thanks to Dave Pell at NextDraft for pointing to it):
    http://www.nytimes.com/2016/08/01/health/immunotherapy-offers-hope-to-a-cancer-patient-but-no-certainty.html?utm_source=nextdraft&utm_medium=email&_r=0

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