TW: Suicidal Ideation, Terminal Illness, Cancer
Hello everyone. My brain is scrambled eggs at the moment. A new term for when things in my mind are unmanageable or out of control. I haven’t had this much anxiety on my plate in so long. I think it’s been building up throughout the summer all coming to a sharp point that pops the balloon of dissociation and distraction that’s been preserving me letting me fall down just to be brutally reminded of the reality all at once as I hit the ground and get smushed like a pancake. Going for a breakfast theme I guess.
Here I am, hoping that someone will come and scrape me off the ground, someone to take care of me while I process because the processing takes time and energy and those are 2 things I’ve been lacking lately.
I have a lot of updates since we last spoke. I moved into a new apartment that I love, my job is going decently well, I’m on track to get my jaw pain fixed, I met my wonderful and curious nephew and I finally got the color changing lights that you control on your phone. Those are good, even great things. And they have gotten me by for quite a while. I’ve been distracted by that but, then came the fatigue. I haven’t felt awake in months it feels. No matter how much sleep I get or the caffeine I drink nothing seems to prevent the heaviness of my eyes or the fogginess of my brain. This began to concern me when I realized this correlation with a series of inflamed lymph nodes I was having and some potentially concerning lab work.
I finally went to the doctor. I saw the NP at the office and she felt my lymph nodes and said she couldn’t feel anything of significance, she mentioned that my fatigue could be related to my rotating shifts (as if I hadn’t considered this), and said to schedule a head/neck ultrasound but, to quote her “it was not urgent.” I asked if she was going to redraw labs because of my previous abnormal results of white blood cells (immune system) and CRP (metric of inflammation in the body) and the fact that I was having trouble with my lymph nodes (which were an inflamed part of my immune system) her answer was “I wasn’t planning on it.” Let’s just say I changed her mind.
I couldn’t schedule the ultrasound until October and based on her lack of urgency I wasn’t concerned by this timing either. I got the labs drawn and awaited results.
My labs came back abnormal again. Both labs elevated even more than they had been in previous blood work. Nothing catastrophic but, considering my other symptoms, definitely of note. I messaged my provider and inquired about this. They responded with a message that they had moved my Ultrasound to Monday at 11:30am and hoped that worked with my schedule if not they could potentially fit me in tomorrow.
The change of tone was jarring. Something that seemed like a “just in case” turned into a crucial piece of information about my health very quickly. I was lucky that the ultrasound did work in my schedule but, I also requested further lab work. As an Oncology nurse, my brain was going in one direction at this point and I wanted to rule-in something because the 4 days of waiting for the rule out would be excruciating. If you haven’t caught on yet, I was concerned about Cancer.
I know it seems like a drastic and dramatic jump. But, I’ve seen diagnosis found on much much less. A kid comes in for a bike accident or there’s routine lab work before getting their tonsils out, all of sudden your life is changed. Not to mention H’s diagnosis which came related to her episodes of syncope at a field hockey tournament. Life happens, and I had way too much information about how.
They agreed to do the lab work but, stressed to me they didn’t believe this was a connective tissue or autoimmune disorder. I brushed this off, not because I thought I knew better, but because it contradicted my rule-in method which at the time was all that I felt was between me and serial panic attacks.
I worked all day Thursday (the day they okayed the labs) but, was hopeful to go to the lab on my lunch break. Which I would quite literally never advise anyone to do but, remember we are fully engrossed in the rule-in method and we can’t rule it in without the labs. The lab stated that it was going to be a 30-45 minute wait which was over the time allowed for my lunch break. I ended up actually getting food and returning to the floor in defeat, googling the hours of various nearby phlebotomists. All were just out of reach of my clock-out time of 7:30pm which in itself is always wishful thinking. I sat in the conference room with my lunch and because I had told my coworker I was going to get labs drawn she asked how I did it so fast, this was in front of my units nurse educator. I explained and that’s when my unit educator stated one of the weirdest perks I’ve found out about being an inpatient nurse. “I can draw your labs,” and with those words, a couple of needle pokes, and a few tubes of my blood; the rule-in method was back in action and I refreshed my email for new lab results probably 20 times an hour from that moment until Saturday night.
At this point because of the massive bruise my Nurse Educator left on my arm while drawing my labs, everyone generally knew what was going on with me. Conversations about the topic always consisted of this dialogue in some form: they would said “it’s not lymphoma!” And then I would look at them and turn my head and they would quickly add in “well I can’t say for sure but…” which is when everyone I spoke to also became fans of the rule-in method. Over the next two days everytime I got a result back I would disappointingly go up to a group of my coworkers and say “it’s not lupus” or “my thyroid is clear.” Which are normally relieving pieces of information however, not in the rule-in method. The most painful was Rheumatoid Arthritis which, would not only explain my abnormal labs but also my chronic pain dating back to my pre-teen years. Solving many problems. Would be big points if we could rule that in. But, unfortunately I was negative for the Rheumatoid factor. As I checked things off the list I realized that the rule-in method may be increasing the anticipatory anxiety of my coming ultrasound than decreasing it. But, we were all in now and when I received my last negative result Saturday morning I was all but convinced I had cancer.
Over the weekend I struggled…a lot. My brain as I said was scrambled eggs. Any information I received was put into the thought spiral and twisted into the most negative interpretation. I was walking through a mine field and it felt like I didn’t miss a single mine. I worked overnight Sunday into Monday and wish I could say work was a good distraction. But, the reality was that all I could do was run through scenarios over and over in my head.
I was able to sleep a bit before the test which was beneficial because it kept me off google and passed the time quicker. I had to be in that night for work and thought about what I would say if I needed to call off because of my diagnosis. “I can’t come in tonight, I have cancer.”
I was shaking by the time I got to the ultrasound. 15 minutes early, a rarity for me. I sat in the waiting room watching the Price is Right sitting across from an elderly woman falling asleep sitting up. If they called her name I can assure you she didn’t hear it.
When it was time the hallways felt so long and full of open doors. I looked at the room numbers thinking about which ones would be lucky numbers and which other ones felt like malignant ones. It felt so cold and lonely.
I couldn’t even tell you what number room I went in after all. The ultrasound tech asked if there was a specific spot or several. I answered several and she said that they would do an entire neck mapping.
If you’ve never had an ultrasound before there’s a few things that I need to explain. Number one is that I always thought the gel would be cold but no it was warm and very uncomfortable. I felt bad for telling my past patients how it wasn’t weird feeling at all because I was a liar for sure even if I didn’t know it. The second is that they move the ultrasound probe around the area they are imaging and press some keys to take a picture of what they are looking at and it makes a very specific beep. She did my right side first, away from the screen, and all I could do was listen to the “click click clack beep” and feel the gross warm gel be moved around on my neck that was already sore. When I got to see the screen I watched every second. I asked myself “is that cancer?” And beat myself up for not looking up ultrasound images of cervical lymphoma on google so I would know what I was looking for. Thankfully though, the left side was easier to tolerate because of the distraction.
And then it was over.
I was told it could take a day or two to get results. I didn’t care at this point. I already felt I knew. I called my mom who ended up being on her way to give me a surprise hug in the parking lot of the doctors office. I asked if she just meet me at my apartment instead.
I cried the whole way back, I cried taking my meds, I cried hugging my mom, and I cried falling asleep. I was terrified of the unknown and I would like to believe I was even terrified of dying.
As someone with chronic passive suicidal ideation you would think that a health scare such as this wouldn’t be as world shaking. I have thoughts daily about ending my life, what’s the difference if it’s a terminal illness? I sat with this for a long time over that weekend. And still I don’t know what the difference was. Because in all honesty it would be easier if it was an illness that was physical, for my family anyway. But, it gave me hope that the life I was building was worth living and in the back of my head I knew that.
My mom tucked me into bed just like she did so many nights when I was a kid. Telling me it would be alright and knowing in my heart of hearts that she didn’t know that for sure. I was never naive enough to think that she could control the unknown but, I always appreciated her willingness to pretend for me.
I woke up to my alarm for work at 5:30pm. I checked my phone…the results were already back.
“No cervical lymphadenopathy”
That’s it. No swelling in my cervical lymph nodes, no disease, just a health neck. I cried again. Ruling out cancer was a huge relief that so many in my life didn’t/don’t get to experience. This was not lost on me.
I still had the neck pain, but it wasn’t cancer and I could work with that.
I informed the people who had helped me through the previous days. It felt like it solidified it. And then I went to work.
After getting the actual rule-out I had very little time to process everything until now. How heavy that stress was, that I was never going to see my niece and nephew grow up, or work as a nurse again, or see my cousins get married, or grow old with my friends. But also the stark difference between those thoughts and my chronic ideation of ending my life myself.
Scramble eggs man.
To be happy for someone but, also nervous about their choices. To love someone but, not to like them. To not like your job but, terrified to get fired. To want so badly to die but, then to be terrified of getting a terminal illness.
These are just some of the contradicting ideas that play table tennis in my brain. Back and forth. The discomfort of the unknown, of not knowing what is “right” and to have to live with the concept that both can be true. It’s painful. But, it’s progress.
In the past I would not be able to verbalize the contradictions for they would be too overwhelming. Now I list them for you, not because I’ve conquered them because I definitely have not, but because I can see them and I’m working on accepting them. We are all hypocrites. We all have contradicting ideas and beliefs or opposing behaviors and values. We don’t always walk the walk if you know what I’m saying. And truly at times I envy those who can ignore it. But, I can’t. So, I learn to sit with the dissonance and I live my life with gratitude. Because I am still here, alive, and I’m lucky to be.
I hope that it won’t take me nearly as long to write another post. Im attempting to become more mindful and practicing staying in the moment. Staying in this reality is essential snd writing does help that.
Sincerely,
Your Strong Female Lead
