Living in the Unknown

Being a nurse, my job is to help facilitate solving an “unknown.” Let’s say a student shows up in my school health office feeling unwell. I have to find out their symptoms, take their vitals, and get a history. I get a picture of what’s wrong, try to determine what it is, and then make a plan of action. I’m pretty self sufficient in this and have almost total autonomy over how the process looks and what I do. I enjoy solving these puzzles and I’m always pushing myself to solve them in the most efficient way possible.

Unlike my school nursing job, cancer isn’t like that. Cancer just keeps presenting problems, even well after active treatment is over and I don’t have much say in what happens. The loss of autonomy drives me (and a lot of cancer friends) absolutely bonkers. 

The Latest Unknown

Shortly after my lymphovenous bypass surgery, I started to notice some swelling on my left lower neck. I didn’t think anything of it, assuming it was just post surgical changes. I thought my body was trying to figure out this new lymphatic system. As the swelling continued well into a month post-surgery and the school year was quickly approaching, I knew I had to try and figure this out before my schedule became very restricted. 

I reached out to my medical oncologist, Dr. Wells, and her team first. I instantly got an out-of-office automatic reply email from nurse Stacey. Fan-freaking-tastic. I headed to the online portal, which I just don’t like—it feels slow and too commercial. I sent in a brief description of the problem (along with pictures) and started the waiting game. 

Luckily for me, and an ode to the professionalism that is Nebraska Cancer Specialists, I heard back the same day from a different nurse navigator. She told me that Dr. Wells was out all week, but they wanted me to come in and see a mid-level provider to “get eyes on it.”

I went in the next day and met with one of the PAs. He was just as stumped as I was and even had another mid-level (the nurse practitioner) come and check it out too. The consensus was: “It doesn’t feel like cancer. It’s in a weird spot for cancer to spread. Let’s do scans.”

I had a CT scan in the next few days with similar inconclusive results. 

“There is some mild induration and expansion of the fat in the lower left neck posterior to the sternocleidomastoid muscle with a few small lymph nodes suggesting adenitis or other inflammatory process. This is not typical for metastatic disease. Recommend follow-up.”

That’s what the scan read. Which basically translates to, “Well that’s not normal, but who knows? Doesn’t look like cancer though!”

The mid-level providers were satisfied enough with this response and said just watch it. Nurse Stacey and I wanted our quarterback and leader, Dr. Wells, to weigh in. 

Anxiety

Enter, a week of waiting until I could see Dr. Wells. A week of so much anxiety, and private anxiety at that. See, Mitch and I decided to not tell any muggles (or non-cancer fam) what was going on. I’ve had cancer scares before that resulted in different less scary diagnoses than cancer. There was no reason to terrify those who love us the most for a week too. We’d just lift each other up in our fears and anxiety, and lean on the cancer fam when needed.  

We faced the week hopeful that Dr. Wells would have some idea what was going on. To be honest, I struggled. I couldn’t get comfortable at night, because this thing (who we’ve named Sandy) made it difficult to sleep in my typical side sleeping position. I resorted to using a neck pillow and sleeping on my back like a corpse. I lost so much sleep to being uncomfortable, which doesn’t bode well for my anxiety. My body is a fragile little fiddle leaf tree and any slight change makes it revolt into less than stellar versions of my highest self. 

In my silent internal struggle I tried to figure out Sandy on my own. I had quite a few early morning “doctor google” sessions. I reached out to patient experts, shared my results and received just as stumped answers back. My calm peaceful summer was gone and the storms of late July had entered the chat, leaving me feeling unsteady and heightened. What if this is the cancer back? What if we can’t figure out what this is and it just keeps growing, obstructing my airway and leaving me disfigured? What if… what if… what if… So many what ifs filled my head on repeat. It was an incredibly exhausting and lonely world to live in. 

Hi Dr. Wells 

Bright and early at 8:15 on Friday morning, we saw Dr. Wells. As always she was so patient with us, pulling up the scans so I could see for myself what this looked like. Offering up little in way of an official diagnosis, beyond reassuring me that she agreed with the radiologist; it really doesn’t look like cancer. 

So now what? How do I live with this unknown pocket of fat/inflammation that’s making my life uncomfortable? Physically, we’re going to try some steroids and hope it self resolves. If that doesn’t work, then maybe do a PET scan and biopsy to see if we can get more answers. Insurance will most likely fight this though. We could run some biomarkers to give peace of mind it’s not cancer, but those aren’t super reliable and could cause more anxiety if positive.    Dr. Wells is happy to refer me to a rheumatologist to have them investigate it too if it persists, as they are the experts on random unexplained inflammation.  

I’m sort of just stuck in limbo with steroids, Sandy, and that annoying word “inflammation” that triggers me beyond belief. More waiting to see what happens. More opportunities to work on myself and find peace in the unknown. I’ll be honest though, I just want to scream at the unknown and am sick of working on myself right now. I just want the peace of early summer back, where things all made sense and there was no Sandy. 

Cancer and its weird side effects, like Sandy, are exhausting. The weird side effects are honestly, at times, more exhausting and frustrating than the original cancer itself. At least with a cancer diagnosis, there was a definitive plan that had well explained and understandable outcomes. Treatment either worked or it didn’t. I either lived or I didn’t. Sandy doesn’t play by those rules and it’s super frustrating for my type A mind to wrap my head around

I tell you all of this, because I know I’m actually not alone. Most, if not all, cancer patients have spent time in this infuriating land of side effects present with unknown diagnosis. We’ve all had some side effect caused by cancer that we’re now dealing with while trying to “find our new normal.” Some side effect or new issue that really affects our daily living—but since “it isn’t cancer,” it feels like nobody cares or is giving us any grace. 

“Just get over it already! Can’t she just get healthy? Why is she always at the doctor or canceling plans? It’s just a lump. I get lumps all the time and don’t run to the doctor! They said it’s not cancer. Just get over it and suck it up. We all have our issues!!!!”  Is what it feels like the world is thinking or telling us. Or maybe it’s just what I’m telling myself. Man, the internal stories we tell ourselves can be sneaky little liars! 

If anyone is ever actually thinking those things about a cancer patient, please know that after a cancer diagnosis it takes longer to “just get over” the random lumps and bumps. And yes, it does all actually have to be looked into and determined if it’s cancer post-diagnosis, because catching things early saves lives, or at least makes available treatment options that makes life easier to be enjoyed. Please give us the grace we’re desperately trying to also give ourselves, and be patient with us. I know I’ll at least try to do the same for you, too.

Now what? 

Now, after waking up at 5AM (because I couldn’t get comfortable), I just lay in the hammock and share my woes with the world, while desperately trying to get comfortable with not only my body, but the unknowns and anxiety I’m living with too. I want to run from these feelings and find some way to escape this world of unknowns. I force myself to focus on the facts that Sandy is, as of what we know right now, not cancer or life threatening. She’s annoying AF, but not cancer or life threatening. I sit with the anxiety Sandy is causing and just breathe. Let it pass through me and move on about my day and life, at times on autopilot while my mind wanders to the unknown. At worst—wrapped up in the what ifs and doctor google. At best—truly present in the current moment. 

Maybe it would help to tell the muggles next time and ask for grace, while I face the unknown.  Not isolate myself in it. I don’t know. Everyone has their things, but that doesn’t make my things any less important. Maybe the way I heal, the way the world could heal, is if we’re more honest in what we need from not only others but ourselves. I don’t know. I’m no guru. I’m just going to go try and have a magical day, while still facing Sandy and her anxiety head on. I’ll attempt to be the most present remembering the facts and giving myself grace, maybe stumbling along the way back to doctor google, but always coming back to the present. Sandy can just be and I can too. 

I suggest you go on and try the same dear warriors. Face your own Sandys. Be honest with others (and yourself) about what is going on in your life and what you need… I think those are called “boundaries.” Then fight like hell to be present and as always have a magical day.