I cringe when I hear the word. I especially cringe when I’m asked, always in a high-pitched, much too enthusiastic tone,
“So are you in remission now?”
I know and understand why people ask. I also know that by asking in a gleeful way, it’s because they hope the answer will be a resounding “Yes!”
Personally, the question only forces me to immediately assess, right there on-the-spot how I’m going to answer every single person who asks. Do they want the truth? Are they simply asking because it’s what society has dictated we do when we see a young adult, who doesn’t look “sick”? Also, do I really want to go into the ugly details of it all? How much time do I/we have?
Some potential answers to the remission question include:
- Yes! I am cancer free for just about 5 years now!”
- Yes! I am cancer free for just about 5 years now… However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred in less than a year. So technically the last tumor was removed in 2015. Since then I’ve had: 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy.”
- Yes! I am cancer free for just about 5 years now! However, I’ve undergone a total of 7 brain surgeries in 6 years. I was initially diagnosed in 2014, but the cancer recurred less than a year later. So technically the last tumor was removed in 2015. Since then I’ve: Had 5 additional surgeries; Umpteen hospitalizations; IV drug infusions; so much radiation that to this day, I’m still suffering the side effects; and, I have uncontrollable epilepsy…I cannot say I will ever truly be “cancer free” because the cancer combined with the treatment changed almost every single aspect of my life. I will never be the same after cancer. Not only do I have a multitude of scars to prove it, but I will never again be free to do the things I loved like swim in the ocean, scuba dive, hike, or even run, which frankly I never loved but having the ability to catch that subway just about to pull away or make it to the bus stop just in time to grab that last bus – nope, can’t do it.
So, while it’s confirmed there are no cancerous cells in my body, do I feel like I am “in remission”? Absolutely not!
I can’t even begin to list all the ways cancer remains with me, but ya name it, and cancer has affected it.
For example, just the most mundane, everyday things:
- Getting up in the morning – for me requires immediately putting on sneakers with my AFO, or leg brace, for balance and stability to get out of bed and walk around. Not just that, due to the issues with my left hand, it takes at least 3 tries to even get my sneakers tied. (I tried elastic laces and they would not support my AFO properly)
- Getting dressed in the morning – for me, it’s a chore! I have to pull a Macgyver move to get my bra on properly. I constantly put clothes on backwards. Anything with a zipper is a true challenge.
- Already what would’ve taken a fully-able-bodied person to do in 5-10 minutes has taken me at least 20.
- Looking in the mirror – I must mention that every time I look in a mirror, I’m reminded of cancer. I have a slight eye droop that isn’t even noticeable to others. I see it though! About 1/3 of my scalp is a graft from my stomach so I’m completely bald there.
- During the last few surgeries: 1. A piece of skull was removed, so my skull has a noticeable divot. 2. The shunt that was implanted during my last surgery creates a noticeable bump towards the front of my head. Thank god I still have lots of hair and fantastic hair pieces!
- Then, because I’m so thin, I can actually see the shunt catheter, which runs from my brain down near my heart and into my abdominal area. I have a massive scar from the skin graft running down my entire abdomen. Plus, now I’ve got two new scars from the laparoscopic surgery to insert that catheter into my stomach. Yay!Oh and my bellybutton is about 6 inches from where it should be.
- Of course, all of this is hidden away underneath my clothes, but I have to look at it all EVERY SINGLE DAY and frankly, I hate it. I cannot embrace these scars, like so many survivors do. To me, they’re just constantly reminding me of the trauma.
- Showering – I have to use a shower chair and utilize grab bars to get in and out of the bath or shower. I can’t get my left arm up high enough to use my left hand to wash my hair. So I have to use just one hand to scrub in the shampoo and conditioner. It’s also difficult to use that left hand to squeeze the bottles, apply shower gel, etc.
- For whatever reason, hot water and steam make me extremely light-headed and dehydrated. So I always need a glass of water nearby, the door must be open to let the steam out and I can typically only shower at night because it makes me extremely tired and/or weak. Again, due to the problems with my left hand, I can never get the towel wrapped around me. So, I have to towel-off in the bathroom and put on a robe or my pjs.
- This whole process takes at least 30 minutes, while an able-bodied person could be done in 5-10 minutes.
Now, those few examples are just a taste, a sprinkling of what cancer has done to me physically, mentally and emotionally.
I love that other survivors can embrace the remission word, and I recognize the power that comes with the ability to say, “I’m in remission.” That’s just not the case for me.
Further, I wish I could say, “Cancer doesn’t define me!” like so many other survivors. However, for me cancer is and will always be present despite the fact that my physical body is “cancer free”.
Cancer is and will always be a part of me. It is a crucial piece of who I am today and who I will be in the future.
Plus, cancer will forever lurk in the darkest corners of my mind. Unless there’s some magical potion we discover one day, I will forever have to acknowledge/be aware that a tumor could indeed return at any time. It’s not something I dwell on, but shall I say, “it’s the nature of the beast.” Cancer can and does come back. I’ve already experienced a recurrence. So, I’m literally living proof of this awful truth.
The quote pictured at the top of this Post from ANITA MOORJANI on remission speaks to how I’ve internalized cancer in my life. Although I’ll never be able to say, “I’m done with cancer” I have indeed turned it into my “mission”. Hence, why I began writing this Blog, am working towards publishing articles on my experience, and ultimately a book.
Cancer also led me to finally find my passion working with various nonprofits to raise awareness about cancer in general, but mostly awareness about brain cancer; to serve as a patient advocate with the National Brain Tumor Society; and, to constantly fundraise for more research, treatment options and Dear Lord please, ultimately a cure!
Yes, it took two bouts of brain cancer to find it, but I found my passion-my mission! While every single day is a new challenge, every single day is also an opportunity to work on myself.
So, I believe I’ve found a new perspective on “remission”. It’s my mission.
To Learn more about ANITA MOORJANI, go to her website at https://anitamoorjani.com/. She has a fascinating story. In short, after four years of battling cancer, she went into a coma. Her husband was told:
“There’s nothing we can do for your wife, Mr. Moorjani. Her organs have already shut down. Her tumors have grown to the size of lemons throughout her lymphatic system, from the base of her skull to below her abdomen. Her brain is filled with fluid, as are her lungs. And as you can see, her skin has developed lesions that are weeping with toxins. She won’t even make it through the night,” the doctor told my husband, Danny.https://anitamoorjani.com/
Anita, describes what occurred in the following hours, days and weeks. She had a Near Death Experience (NDE) and details how she chose to return to her body to spread her message-her mission! Obviously, she came out of the coma and left the hospital 5 weeks later with no evidence of cancer anywhere in her body!
To Learn more about the National Brain Tumor Society go to their website: www.braintumor.org