What’s the Word?

According to some, we’re survivors after we’re done with treatment. To others, we’re survivors from the second we’re diagnosed. For me, a person with a chronic leukemia, it’s hard to figure out how to label myself – I have a cancer that I am going to die with, not of. From the second we’re diagnosed, we hear stories of others with cancer; when someone hears that you have cancer they chime in with, “Oh, I’m so sorry! My great-aunt Edna’s best friend’s cousin had leukemia and she died.” Well, thanks! That sure helps a lot to hear about someone dying! Even when someone shares about a loved one (or someone they know of) who “beat it”, it never feels right.

As we all know, everyone’s cancer experience is not the same. Even if we get the same regimen, we don’t have the same side effects or results – no matter how much we wish that that were the case. If we all reacted the same, we wouldn’t have to lose friends to this horrible disease. We wouldn’t have to wish that it hadn’t taken them from us and we wouldn’t have to think “Wow, I know they would’ve loved this!”

People like to think that cancer ends with treatment when it doesn’t. Some people don’t even get the chance to end treatment. Once the beast of cancer enters your life, it is always there. It’s just the marks it left behind, the seen and the unseen – the anxiety you get when you cough, feeling a pain in the spot you felt it before diagnosis, a spike in anxiety when you hear the name of the medication you took, the smell of hospital disinfectant, or any number of things; cancer leaves an indelible mark on us.

With chronic cancer, those thoughts are always there. My life is lived in 28 day increments – you see, I am in a clinical trial where I get blood drawn every 28 days to see how the drug is doing; I’m 50 cycles in and now things are working well, it just took 18 cycles or so for me to have a “robust response”, as my oncologist puts it. However, even though my counts are routinely in a normal for me range, I still have anxiety after every blood draw. What if things suddenly dropped? What if they are really high? Did I get sick? Will I need a scan? Will I need a bone marrow biopsy? The specter of cancer is ever present and will always be a passenger on my journey with cancer. It’s even worse when they don’t call to discuss the results! My anxiety goes sky high when that happens. What if something is wrong with my counts? Maybe the lab didn’t get my blood? Maybe I’ll have to get stabbed again? No matter how you cut it, cancer gives you anxiety. Once you get a cancer diagnosis, anxiety becomes your new best friend!

One thing people don’t know is the community that forms around cancer. Sure, the media might portray people sitting in those infusion rooms chatting and learning each other’s names and closing ranks when one of them needs the support, but that isn’t really how it works – especially for young adults. We’re adrift, we’re alone, we’re isolated, we’re so starkly different from the people who are 30, 40 years our senior. They’re worrying about their retirement and spending time with their grandkids while we’re worrying about whether we can work or even have kids. We have to seek out our community, ours isn’t organic like that by virtue of our age. In comes the Internet, the conglomeration of wires and myriad electronic devices, to connect us all. The Internet helps us find our people, our herd, those who get us. The internet helps us find survivors who can pick us up when we are down, people who can lend a supportive ear and shoulder to lean on when needed. We can find people who know what it is like to go through this at a young age, we can support the ones who are at the start of their journey and once they are where we were they can do the same to a future cancer newbie. No matter how much we wish that there is never another person fresh to cancer, it just keeps happening – so we need to do the best with what we have.

When I was on my first line treatment, I experienced frequent nausea and vomiting to the point where I considered stopping treatment multiple times. However, I endured it for almost exactly two years, changing the dose and anti-nausea meds over time to see if that helped. It didn’t really help – but we had to give it a try. I was thinking the whole time, “If I can get off these meds, things will be so much better.” It was, but I realized that things would never feel like they were pre-cancer. I would never be my “normal” chronically ill self, just a me that was permanently changed by this one in five million cancer that my body decided to randomly give me. My times without medication were marked with my skin being marred by frequent pinpricks; sometimes they were weekly, sometimes biweekly, but the most I ever went without seeing my new friend the phlebotomist was four weeks.

One of the difficult things you face with cancer outside of treatment is the language to use. Do you use warrior language? Do you identify with cancer being a battle, a fight, a conflict? Or do you see it more as something you experience or deal with, a journey you are taken on without your consent? You can see it as one, none, both, whatever you prefer – it is a very personal thing. Some people like the terminology of survivor/survivorship, some use thriver, and some just do not have a word to define themselves. I vacillate, I waffle, I have trouble deciding the terminology for me. Partially due to my never having to do “real chemo” – I’ve done three lines of treatment before my clinical trial, the first one was an immunosuppressant pill that is sometimes used for chemo, but not at the dose I took it at. The second one was a chemotherapy pill and the third was the first drug, but injected. The trial drug I am on is a targeted therapy. So when I hear people talk about how hard chemo is, I cannot relate – I can try to relate with my experience with the various side effects I have had from all of my treatment, but I have never had a port or any time in a chair hooked up to a bag of chemicals that are reminiscent of Kool-Aid; the closest I got to that was having to get blood transfusions when my medications made my counts drop. I’ve never had surgery, so I cannot relate on that front either. Perhaps it’s just a touch of impostor syndrome making me feel this way, since I know I can relate to my fellow young adults and help them out – they have said as much, but sometimes the nagging feelings just pop up in the back of my head, the chorus chanting that I cannot relate; but who can truly fully relate? Like I said, nobody’s experience is the same – so maybe I should take some solace in that and take a page out of my own playbook and realize that post-diagnosis life is hard for all, just in different ways.

Dealing with cancer means that we take the good with the bad. We savor every piece of good news like we’re eating the world’s most delicious meal and we deal with bad news the best we can. We must be there for our friends in the rough times like they are for us. I might not know what terminology resonates with me, but I know one thing: I am surviving.