Fast facts (if you don’t have time to read the full post): I wish my story had improved since the last time I wrote, but alas dear reader, I have been pushed deeper into the never ending medical narrative that has consumed every waking moment of my life. The fast facts seem pointless, as the long version is what you need to read. Just know I continue to seek answers, but my mental health is struggling to keep up. The thing saving my life? This simple question: What am I willing to do to keep myself alive? Apparently anything.

Side note: Normally, you can jump into my blog at almost any point and join the chaos without doing your homework. This time, however, I’m assigning prerequisite reading. I highly recommend reading my Aug. 9 post first, as today’s post picks up where that one left off (a real cliff hanger if you ask me!)

Days until we retest ctDNA: 18 days

TO THE REALLY FUCKING LONG VERSION!

I finally put away the laundry today.

It had been sitting in the basket for weeks. Clean clothes buried beneath other clean clothes, concert t-shirts, mismatched socks, and dresses I had pulled out and tried on only to decide they didn’t feel right that day, things worn for an hour and tossed back on top.

Eventually, it stopped being a basket of laundry and became a monument to all the small things I simply could not bring myself to care about while trying, once again, to save my own life.

For the past eight weeks, my life has been a triage system. There were things that mattered, things that could wait, and things I simply did not have the capacity to carry while grief, fear, and the desperate need to find answers have fought their way to center stage.

I don’t know whether things are better, but today I put the laundry away.

---

Eight weeks is a strange amount of time. Long enough to forget what it felt like before, but short enough that I can still remember exactly who I was the day before everything changed. I was fine, and then suddenly I wasn’t.

I’ve already documented most of those weeks in a previous post (if you haven’t read the previous post, this is a precursor for today’s post so click here for the recap), and there is only so much medical exposition one blog post can reasonably be expected to endure. When I left off, the next item on my increasingly wild medical itinerary was a Tuesday breast ultrasound of the hard, painful thing (lump? shelf? ~mystery~) I had found in my chest and a visit with my primary on the same day. My body, however, didn’t want to wait that long to investigate.

Between Aug. 9 and 16, I found myself crawling through every hour of the day just trying to make it through. Between the pelvic and abdominal pain and my new chest pain, I felt pushed to my mental edge. My symptoms kept evolving and changing in ways that made them incredibly frustrating and difficult to pinpoint. At that point, the pelvic and abdominal pain was dominant, while the chest pain was primarily localized to my right side of my chest. But on Thursday, Aug. 13, something shifted.

I had taken the day off to work on my Halloween costume with my friend. What was supposed to be a glorious day of crafting and bonding ended with me crippled by chest pain that wrapped around my ribs and pressure that hurt when I breathed deeply.

The worst part? I did nothing. I just sat there cutting out fucking foam pieces, debating whether this was “bad” enough to go to the ER.

I fought with myself through that entire evaluation and ultimately didn’t go. I also barely made any progress on my costume. But the pain was new and startling, and I was having a hard time understanding how I could be in this much pain, especially when everyone around me thought everything was fine because my tests were all fine.

So, I raw dogged the weekend, willing my body to make it to the ultrasound on Tuesday without further investigation. I started noticing spells of fatigue that didn’t improve after sitting down for 10 or 15 minutes. My head felt light. Headaches started creeping in. The chest pain ebbed and flowed in intensity.

By Sunday night, my pelvic pain had calmed down to a background pain (mind you, I was still on antibiotics this whole time), and it felt like my brain finally had enough room to focus on my chest. It felt like a small breakthrough, despite the tides changing, but something felt seriously wrong from the chest up.

Monday morning, I woke up with chest pain that felt like a line running through my heart to my back, a mild headache, and almost immediate fatigue. I had even gone to bed early and felt like I’d slept decently. How the fuck could I already be tired from doing NOTHING!?

I know smartwatches offer correlational data, not pinpoint medical data, but I noticed my heart rate and heart rate variability were starting to dip again. Over the years, I’ve seen a strong correlation between those changes and my body fighting something off or struggling through stressful events like chemo. I’ve watched it happen time and time again with colds and the flu. Something has to be wrong, I told myself.

I got ready for work anyway, struggling through the brain fog and exhaustion. By the time I got there, my chest was hurting again. Even my voice sounded slightly different. I barely made it an hour before I politely asked my coworker to drop me off at the freestanding ER because I wasn’t sure I should drive myself.

She whisked me over, and the moment I walked in and told the nurses I was having chest pain, everything moved very quickly. I was immediately placed in a room, medical staff moving quickly and asking me questions as I removed my shirt and lied down on the bed. An EKG was underway almost immediately as they worked to rule out a heart attack.

I felt like I was in an episode of “Grey’s Anatomy,” except there was no dramatic soundtrack telling me everything would be resolved before the credits rolled. For the first time in a while, a sense of fear and dread entered my system and I let myself cry.

A familiar nurse came in, a look of surprise and sadness on her face as she asked why I was back and began prepping me for an IV. She kindly asked if I wanted to use Lord Voldeport, but I hope you can imagine the surprise on her face when I said I thought my port might actually be part of the problem (at this time, with ZERO PROOF other than vibes) and that I should responsibly opt for an IV in my arm.

She looked at me in disbelief. Even I couldn’t believe the words coming out of my mouth. In what fresh hell would I ever willingly offer my arm first?

The needle invaded my arm, and she squirmed it around for for what felt like an eternity before finally landing in a position that allowed for blood return. Two vials were drawn, and I was told a chest CT was next.

Part of me was excited for the CT, hoping it would show something that supported the amount of pain I was in. The other part of me was pissed because I had specifically told my ARNP I didn’t want another CT scan of my chest when she asked what kind of investigation I wanted to do for my lil chest lumpy because I felt like I had already consumed enough radiation for the year. And yet, here we were, one day before my fucking ultrasound, about to find out whether or not I was having a recurrence while I simultaneously debated whether I should cancel the breast ultrasound altogether.

Let me tell you, I have never had a CT scan with contrast through an IV in my arm, and that contrast fucking STUNG as it entered my body. I’ve had plenty of CT scans over the last four years, and this was the first time I wanted to yeet myself off a cliff. I can handle the metallic flavoring as it enters my bloodstream, but goddamn, that was a spicy experience. And as soon as my adventure began in the CT scan, it was over, and I was wheeled back to my room to await my fate.

Roughly 45 minutes later, my watch vibrated with a notification. My scan results had landed. Once again, I refused to open them because anxiety is a bitch when you’re alone.

I like to think that if it were bad news, someone would bust through the door like the Kool-Aid Man and declare that my body was back at war. But I’ve also never really had someone deliver devastating news to me in an ER, aside from the day I discovered I had a DVT, but I already knew that because Google. It was less of surprise and more like validation.

Finally a provider came in, sat down across from me, and said nothing was wrong on my CT (no pulmonary embolism woo), my EKG was normal, and my blood was absolutely normal. I was fucking perplexed and started crying. Yay nothing is “wrong” but I was still in pain. I was sent with the instruction to follow up with my primary (which I would see the next day). As I waited for my discharge procedure to begin, I finally got the guts to open my CT scan results and saw something that piqued my interest:

Right chest port is noted. Multiple collateral vessels are noted from injection of the left arm with veins draining throughout the mediastinum as well as in the epidural space and back could represent narrowing of central vasculature.

The fuck does that mean? I added it to the growing mental list of things to ask my primary care provider the next day.

Tuesday morning came faster than I expected, and suddenly I found myself at Inland Imaging bright and early for my breast ultrasound, a change of scenery since most of my scans happen through Kadlec.

I’ve only had one other breast ultrasound in my life and that appointment cascaded into a breast cancer diagnosis so cue a little PTSD.

The room was unusually warm. It was super hot outside, and for some reason the ultrasound tech also had a heater going. I awkwardly opened my medical gown and admitted that I was having a lot of anxiety and asked if we could just talk while she did the ultrasound.

She told me about her plans to drive to Seattle the next day to visit a friend. I shared a little bit about my diagnosis. And I very intentionally avoided making eye contact with the ultrasound screen.

Shortly after, she handed me a towel to clean up all the warm jelly and told me she would be back with the radiologist to review the ultrasound with me. Five stars for efficiency, zero stars for my nervous system.

But there is a theme here folks. I seem to be collecting all the scans for my imaginary scan bingo sheet and coming back with great results. My official ultrasound reported the following:

Breast ultrasound: A targeted ultrasound of the right breast tissue was
performed. At 2 o’clock 6 cm from the nipple, corresponding to the
patient’s lump, there is area of shadowing deep to the patient’s scar
consistent with scarring and possible fat necrosis. At 2:30 o’clock 6
cm from the nipple, there is a an intramammary lymph node which is
normal in size and morphology. No suspicious mass or shadowing.

(My nipples may be gone, but apparently they live on in the metric system.)

Another test, another round of good news that somehow didn’t make me feel any better.

By the time my afternoon primary care appointment rolled around, I was running out of places to put my questions. My previous primary visit had left me wanting more, and after striking out on answers twice in less than 24 hours, I wasn’t exactly strolling into the appointment brimming with optimism. Turns out, my instincts were correct.

I started by bringing her up to speed on everything that had happened since I last saw her. I had managed to get into urology through Trios and had started another course of antibiotics. Whether they were actually helping was still up for debate. Maybe? Kinda? My pelvic pain had improved, but it certainly wasn’t gone. She seemed genuinely confused about how I had managed to get a urology appointment so quickly but I brushed her off and I moved north.

I told her about the chest pain, the trip to the ER the day before, the normal EKG, normal bloodwork, and clean chest CT. The breast ultrasound from that morning that showed scarring and possible fat necrosis, but nothing suspicious.

All good news but still in pain.

I pulled up the CT report and asked about the one sentence I had mentally highlighted the night before: the multiple collateral vessels and possible narrowing of my central vasculature. Could that mean anything? Could it have anything to do with my port? Could any of this have anything to do with my port?

She told me she didn’t know.

And listen, I can appreciate “I don’t know.” I would much rather have someone tell me they don’t know than confidently invent an answer. But I wasn’t asking her to solve the mystery in that room. I was asking where we went next.

So I tried, again, to make my case. I knew how weird this looked. I knew the tests kept coming back reassuring. I knew we had ruled out several of the very scary things that could explain what I was feeling, and I was grateful for that, but I was still suffering.

I tried to explain that one of the hardest parts was that my medical map no longer seemed to work. I have spent four years being taught which signs and symptoms matter. Chest pain means this, swelling means this, new pain means that. Go here. Call this person. Ask for this test.

But what are you supposed to do when you follow the map exactly and every road leads to “nothing is wrong,” while your body is still screaming otherwise?

I don’t remember her exact words, and I don’t want to put words in her mouth, but I left the conversation feeling like we had crossed into the territory of whether anxiety or my mental state could be contributing to what I was experiencing. And maybe there was a version of that conversation worth having. I have been scared, stressed, and in pain for weeks. My nervous system was certainly not out here living its best life.

But that wasn’t what I needed from her in that moment. I needed someone to help me figure out where to go next. Instead, she ordered bloodwork to check my thyroid and cholesterol (I also asked if she could throw in a test to see what type of blood I had since I still fucking don’t know and she said no, something to do with insurance not approving it since I had no reason to actually know) and told me she would see me again in three months.

Three months.

I walked into that appointment already feeling hopeless and walked out realizing I had reached a dead end. Whatever happened next, I no longer believed the answer was going to come from my primary care provider.

Luckily, someone else was still looking.

Shortly after that appointment, my ARNP at the cancer center messaged me. She had seen my ultrasound results and asked if I was interested in doing some additional investigational testing given I was still having symptoms. I agreed, knowing that whatever was headed my way would not be things I would enjoy, but hopefully yielded more answers, if not clues. By Thursday, she had ordered my first-ever brain MRI to rule out metastasis as the cause of my new headaches and lightheadedness, along with another dye study of Lord Voldeport. Finally, someone willing to entertain my port conspiracy theory!

The timing could not have been better because by Friday, things started getting fucking fishy again. Thursday evening, I noticed swelling in my right arm and the right side of my face. This is my cancer side and my lymphedema side, so arm swelling wasn’t exactly new territory. My face, however, had never joined the party before.

By Friday morning, my arm felt like it was going to bust out of the highest-grade compression sleeve I owned. My face hurt from the pressure, my hearing felt strange and my entire head felt like it was trapped inside a fishbowl. Something from the chest up was deeply fucking weird for sure.

I called Inland Imaging. The brain MRI would have to wait until Monday, but if I could get my port accessed, they could squeeze me in for a dye study at 3:30 that afternoon. Cue a frantic series of phone calls.

Somehow, I landed a 3 pm appointment at the cancer center. My sister dropped off my lidocaine cream at the library, Lord Voldeport began the numbing process, and shortly after 3 we raced over to get me accessed.

The needle went in and, to the surprise of absolutely no one, Lord Voldeport refused to give blood return, not necessary for today’s purposes but a reminder of the disappointment installed within me. With my port accessed and once again choosing violence, I hurried across the street for the dye study. I hadn’t had one since February, when Lord Voldeport was already putting me through the first season of pointless bullshit, so I was looking forward to a little six-month performance review.

I won’t deny it: I fucking love being right. I love when living in this body, taking copious notes, and obsessively cataloging every weird little change actually pays off. There is a very specific kind of unhinged laughter that comes from watching yet another medical suspicion turn out to be correct, punctuated only by the existential dread of realizing that my experiences may be unusual and awful, but apparently they are never beyond the realm of possibility.

The radiograph finally gave me something tangible: Lord Voldeport was, officially and radiographically, a fucking bitch, just not in a way I knew was anatomically possible. Sometime between February and now, the catheter tip of my port had spontaneously migrated into another vein, making an additional curve along the way. Because I have a terrible memory and the exact anatomy isn’t spelled out in my radiology report, I cannot confidently tell you WHICH hole it ended up in, but I can confidently tell you it was in the WRONG HOLE.

Statistically speaking, this migration is so rare, occurring in approximately 0.1 % to 1.8 % of cases. But I am a rare specimen so of course this would be in my deck of cards and suddenly I felt like I had the source of my chest pain, swelling, headaches, weird fishbowl pressure in my head, it all seemed to make sense. But according to my timeline, that would mean between July 20 and August 21, my port made the U-turn necessary to cause this given my sudden onset of symptoms. But how????

I manically laughed my way back across the street to the cancer center, ready to evict He-Who-Shall-Not-Be-Named from my body and finally feel better. There was just one small problem: It was 4:30 pm on a Friday. As is tradition, anything remotely critical happening to my body must apparently occur immediately before the medical system clocks out for the weekend.

We managed to get ahold of my ARNP, and after reviewing the results, she and the other nurses at the cancer center recommended I go to the ER and ask if someone there could kindly remove my port as this felt life threatening. The surgeons who normally handle these things were gone for the day, and given the new swelling and everything else happening from my chest up, waiting through the weekend didn’t seem like the ideal option. So, back to the fucking ER we went.

We waited about two hours before getting a room, only to learn that, no, they could not remove my port. Even more confusingly, they weren’t entirely convinced that the misplaced catheter tip explained the swelling and pain anyway.

I’m sorry. What do you mean?

My sister and I had spent the waiting-room portion of the evening doing what any two emotionally stable people would do in this situation: devouring medical literature and case studies on migrated port catheters. Pain? Check. Swelling? Check. Malpositioned catheter currently chilling in the WRONG HOLE? CHECK. What do you mean this might not be it?

Another ultrasound was ordered, and off I went to the creepy basement of the hospital on a Friday night to answer a question I felt like we’d already asked approximately 700 times: Do I have a DVT? The answer was no (again.) Glad we checked (again) and I met my out of pocket already so by girl math any scan is now “free,” but gawd damn.

Eventually, we were discharged and sent home. I was told to follow up with my surgical and oncology teams to have the port removed, but as far as the ER could determine, I was in no immediate danger of dying. Cool, I guess?

So I went home with my incorrectly positioned port still inside me, my face and arm still swollen, my body still hurting, and the deeply unsatisfying knowledge that I had finally found something objectively wrong with me and nothing could be done about it for now.

I spent another weekend raw dogging the pain, forcing myself to rest with the hope that relief was finally around the corner. My fatigue was intense, but mentally I felt strangely at peace. We had found something wrong. My port needed to come out. Maybe this was finally the beginning of the end?

And then my pelvic pain came roaring back, because apparently we were not accepting new peace at this time.

There was also another very important deadline looming: I had tickets to a concert in Seattle on Tuesday. This trip had been on my calendar for months, long before my body decided to launch its latest limited series, and all I wanted was to carry myself across the finish line and get there. In the fantasy version playing in my head, someone would rip Lord Voldeport out Monday morning, I would experience a miraculous recovery and skip off to Seattle the next day pain-free and ready to cosplay as a non chronically ill person for 24 hours.

Monday did bring a phone call from my surgeon’s office, but Lord Voldeport’s eviction wasn’t scheduled until Thursday. Three more days. I would still get to go to my concert, but apparently my problematic little plus-one would be joining me. At this point, three days somehow felt both incredibly close and impossibly far away. I wasn’t really living day by day anymore. It was hour by hour.

Monday also meant collecting a new scan: my first-ever brain MRI. In four years of cancer, my brain had remained one of the last unexplored frontiers. I’ve had nearly every other part of my body photographed, magnetized, irradiated, or otherwise perceived by modern medicine at this point. A PET scan remains one of the few bingo squares I have yet to collect, which I kind of look forward to at some point (for science haha).

The brain MRI terrified me for two reasons. First, the obvious: we were looking for cancer in my fucking brain. Second, contrast meant another peripheral IV, and my relationship with those lately could best be described as hostile.

Back at Inland Imaging, I once again asked the person placing my IV if they could talk to me while they did it, a coping strategy I have apparently adopted alongside swearing and pretending everything is fine. My veins were feeling particularly shy that day, aided by the fact that I was clammy and cold despite proper hydration, so we spent some quality time with a heat pack before one finally decided to make an appearance. Even then, my tiny vein was reluctant to give blood return, which it needed to do before everyone felt comfortable sending contrast through it. Eventually, we got there.

Then it was time to put my brain in the microwave.

If you’ve never had an MRI, I don’t know how to adequately explain the sounds. It’s like someone gave a fax machine anxiety, locked it inside a metal trash can, and then asked Skrillex to produce the soundtrack. For about 20 minutes, I lay perfectly still while the machine banged, screeched, buzzed and made a variety of sounds that absolutely did not inspire confidence in the multimillion-dollar equipment surrounding my skull. (I did ask about the sound differences and it has something to do with the coils. Neat.) One noise startled me so badly I swear my skeleton moved independently of my body, which immediately sent me into a new panic about whether I had ruined the scan by moving. The music in my headphones valiantly attempted to compete, but there is only so much a pleasant playlist can accomplish against industrial-strength BRRRRRR CLANK CLANK CLANK.

Eventually, everything went quiet and they slowly pushed the contrast through my IV. Then back into the machine I went, like a pie that needed another nine minutes to brown. I estimated that meant approximately three more songs before they pulled me out fully baked.

Well, this brain MRI is stat, so you’ll have results in like an hour,” the very nice tech told me on my way out.

Oh. Love that for me.

I had about an hour to kill before my next appointment, a massage for my swollen arm, which meant I had approximately 60 minutes to pretend I wasn’t waiting to find out whether there was cancer in my brain.

I chose lunch. There I sat in my car, alternating between salad and chicken nuggets in what I can only describe as a balanced meal for a balanced nervous system, when the MyChart notification appeared on my phone.

My results were in and I had to just swipe that bitch to the left.

I have opened a frankly irresponsible number of life-altering medical results by myself over the years, but even I have standards. I was not raw dogging a brain MRI result alone in a parking lot between chicken nuggets.

I drove to my next appointment and recruited my friend/massage therapist as my designated emotional support human. Together, we opened the results: unremarkable brain MRI.

Finally, the medical establishment and I agree: I love being unremarkable.

I cried. Just a couple tears, but the good kind this time. One less thing for me to worry about. And with that particular nightmare officially crossed off the list, I had one mission left: make it to Seattle.

I had been looking forward to seeing J. Cole with one of my best friends for months, long before my body decided to launch this eight-week campaign of psychological warfare. I had spent the previous several days essentially bargaining with it: Please, just get me there. You can resume your regularly scheduled bullshit afterward. Somehow, it listened.

For about 24 hours, Seattle gave me a reprieve from my own life. Not from the pain exactly; that came with me. So did the swelling, the fatigue, and Lord Voldeport, still sitting incorrectly inside my chest like the world’s worst travel companion.

We ate incredible Indian food. We sang our hearts out for two and a half hours. We spent part of the next day doing what millennials apparently consider a tourist attraction: wandering through grocery stores we don’t have at home.

I was still hurting, but I wasn’t spending every minute thinking about why. I laughed. I sang. I ate good food. I bought shit I absolutely did not need. I felt like myself for a few moments at a time.

Maybe that’s what made those 24 hours feel so precious. For nearly two months, everything had been about my body. In Seattle, my body got to just come along for the ride.

I collected those little time capsules greedily. Because by Wednesday night, I was headed home knowing that Thursday morning, this would all finally be over. Lord Voldeport was coming out and I was so fucking ready to feel better.

I wish I could tell you the removal of Lord Voldeport was the end of this story. Unfortunately, I should probably warn us all now that there is no neat little happy ending waiting at the bottom of this post.

Thursday morning, however, I didn’t know that yet. I arrived for my port removal ready to evict He-Who-Shall-Not-Be-Named and move on with my life. Per tradition, I requested Lady Gaga radio, the same soundtrack I had chosen when Lord Voldeport was installed last September. The nurses loved my commitment to fun procedure music, and I settled onto the table ready to bring this terrible little era to a close.

Lord Voldeport, however, was apparently not ready to go quietly.

The scar tissue around my port had become intense enough that my surgeon spent a solid 10 minutes tugging, pulling and negotiating with my chest while I stared directly into the eyes of the nurse beside me and tried not to think too hard about what was happening behind the surgical drape. I had to ask for more lidocaine twice because, despite being numb, I could still feel entirely too much of the tugging.

There is something deeply offensive about an object causing this many problems and then having the audacity to resist eviction. Apparently, removing a Horcrux is every bit as difficult as the books suggested.

And then, before my surgeon finally freed it, I heard the opening notes of Sia’s “Titanium.” Again.

At this point, this fucking song had followed me out of two MRIs and now it was playing as the thing I believed had been causing so much of my pain was being removed from my body. I immediately told the nurse who had been holding my gaze through the entire procedure about the song about how it kept finding me at these exact moments.

Mid-song, one final tug released Lord Voldeport from my chest. We all acknowledged the struggle while my surgeon stitched me back together, and about 10 minutes later, I climbed off the table, got dressed and was rewarded for my bravery with what I can only describe as a deeply satisfying medical-grade turkey sandwich.

Oh, and I got to keep Lord Voldeport.

Nothing says “thanks for surviving another minor medical ordeal” quite like being handed the cursed object responsible for it. A little take-home treat. A forbidden souvenir. My very own Horcrux, now safely outside my body where he belongs.

Then, because apparently I am incapable of behaving like someone who just had a medical device surgically removed from her chest, I went to work.

All afternoon, I fell into my new habit of body scanning. Does my chest still hurt? Is the pressure better? Was that it? I wanted so badly for the answer to be yes. But by that evening, the chest pain was back.

I tried to be reasonable with myself. Maybe my body needed 24 hours before I started demanding answers from it again. So I gave it 24 hours.

But somewhere underneath all that reasoning, my intuition already knew: we had hit one target and we had missed another.

---

Where the fuck does that leave me?

Honestly, almost exactly where I started.

I am still having pelvic pain. I am still having chest pain. The swelling in my right arm, neck, and face has not magically disappeared with Lord Voldeport. The chest pain itself has changed into this strange, deeply uncomfortable feeling like something is stuck in my throat or lodged somewhere behind my sternum, accompanied by pain through my chest and back that reminds me of the way my body feels when I am really, really sick.

And the fatigue is unreal.

Not I’m tired and could use a nap fatigue. It is the kind that seems to arrive from somewhere outside of me and suddenly takes over my entire body. I can be functioning one minute and feel completely depleted the next.

Even the numbers I use to understand my body are changing. My average heart rate and heart rate variability have been dropping lower than what is normal for me, at times lower than I’ve ever seen them. I know a smartwatch is not a diagnostic tool, and I am not pretending it is. But after years of wearing one, I know my own baseline. I know what my numbers usually look like when I feel well, when I exercise, when I’m sick, and when my body is under stress. Right now, they don’t look like me.

Maybe that means something. Maybe it doesn’t. At this point, I have no fucking idea. But that’s sort of the problem, isn’t it?

I have spent eight weeks being told, through test after test, what isn’t happening while continuing to collect evidence that something in my body has changed.

Some symptoms come and go, some change intensity, some disappear just long enough to convince me that maybe we’re finally getting somewhere before returning like they left their keys. And we have collected a few clues along the way.

Back in July, a CT scan showed inflammation around my ureters and I had microscopic blood in my urine (which the blood in my last UA was gone, thank goodness), but nothing we’ve done since has explained why it was there or whether it had anything to do with the pelvic pain that sent me looking for help in the first place. Antibiotics seemed to help at different points, until they didn’t. Ultrasounds and other testing haven’t given us another obvious explanation.

Then my chest entered the chat.

The CT from my ER visit showed all those collateral veins throughout my chest and noted that they could represent narrowing somewhere in my central vasculature. My port was objectively fucked up and had migrated somewhere it wasn’t supposed to be, but now the port is sitting outside my body.

So, is the collateral-vein thing relevant? Is there actually some kind of narrowing happening in my chest? Was Lord Voldeport contributing to some of this but not all of it? Are the pelvic pain and everything happening from my chest up two completely separate medical mysteries that had the audacity to happen at the exact same time? Or is there some bizarre thread connecting them that we haven’t found yet? What about my positive Signatera test? Is there a recurrence happening that is not being picked up on my scans?

Does it even matter? I don’t know because now I have to start over. I have to go back down the rabbit hole with a handful of clues, several reassuring tests, one surgically removed red herring, and the same fundamental piece of information I had eight weeks ago: Something is wrong with me.

So I leave you all with this thought that I struggling with: what do you do when your medical map is wrong, when every ache and pain you’ve been told to look for to tell you that you’re having a serious health complication is wrong? The pains in your chest could mean pulmonary embolism or a heart attack, but they don’t. The sudden swelling in your face, neck, and arm on one side is not lymphedema or a DVT or a misplaced port but something else. Your scans are clean but your body is crippled under the immense amounts of pain and fatigue with no clear trigger or source.

Many cancer patients (and other humans living with chronic illnesses) talk a lot about advocating for yourself in medicine, but I’ve started to realize that advocacy depends on having a map. There is comfort, however terrible, in knowing which road to take. But I don’t know how to successfully navigate advocating for myself when my map is wrong, when I follow the road and find nothing there.

My scans are clean and the bloodwork is reassuring. The thing I was terrified of (cancer) is ruled out for now, and I am able to have some sort of peace of mind because I never wanted the terrible answer in the first place but I am still in pain. I still wake up inside the same body that sent me looking for help and I am now standing at the edge of the map.

How do you advocate for yourself from there? How do you convince someone to keep looking when you don’t know what you’re asking them to look for? How many times can you say, “Something is wrong with me, this is not normal for me,” when every test meant to prove it keeps coming back saying you’re fine?

Trying to convince people that something is wrong with you is its own kind of illness. Despite collecting as much evidence, memorizing dates, learning how to better describe pain more precisely, taking data on what makes things worse or better, comparing symptoms over spans of days, and preparing arguments before appointments that haven’t even happened yet, I end up negotiating with myself instead.

Does this warrant a visit? If it doesn’t now, when does it? How bad does it have to get before I go? And if I go and they find nothing, will anyone believe me the next time?

The most dangerous thing about losing faith in the map is eventually losing faith in your own ability to decipher it at all.

Today’s song lyrics of the day are brought to you by Alok featuring Jennifer Lopez.

“Everything fine, I still feel weird
Same good life, same dull year
Sun still shine, I stay inside
I don’t feel bad, I just don’t feel right
All my boxes checked, still feel low
Same soft buzz, same ol’ glow
They say I’m lucky, I don’t disagree
I just don’t feel it the way it looks to be”

– Everything’s Fine (AM), Alok, Jennifer Lopez