#almost a year of nothing coming back on scans in my gi tract

[fun-with-colors]

“Do what works” applies to whatever you need. I forgot my adhd meds recently (which I haven’t done in a year), and so the next day I stuck a piece of paper asking “did you take your meds” so it would be covering the front door to my apartment and I literally could not leave until I’d dealt with it.

I've been disabled for almost 29 years. Here's what I've learned.

Tablets sink and capsules float. Separate out your tablets and capsules when you go to take them. Tip your head down when taking capsules and up when taking tablets. Liquigels don't matter, they kinda stay in the middle of whatever liquid is in your mouth.

If your pill tastes bad, coat it with a bit of butter or margarine. I learned this from my mom, who learned it from a pharmacist.

Being in pain every day isn't normal. Average people experience pain during exceptional moments, like when they stub their toe or jam their finger in a door, not when they sit cross-legged.

Make a medical binder. Make multiple medical binders. I have a small one that comes with me to appointments and two big ones that stay at home, one with old stuff and one with more recent stuff.

Find your icons. Some of mine include Daya Betty (drag queen with diabetes), Stef Sanjati (influencer with Waardenburg syndrome and ADHD), and Hank Green (guy with ulcerative colitis who... does a bunch of stuff). They don't have to be disabled in the same way as you. They don't even have to be real people. Put their pictures up somewhere if you want; I've been meaning to decorate my medical binders with pictures of my icons.

Take a bin, box, bag, basket, whatever and fill it with items to cope with. This can be stuff for mentally coping like colouring books or play clay or stuff for physically coping like pain medicine or physio tape.

Decorate your shit! My cane for at home has a plushie backpack clip hanging from the end of the handle and my cane for going places is covered in stickers. All of my medical binders have fun scrapbooking paper on the outside. Sometimes, I put stickers and washi tape on my inhalers and pill bottles. I used my Cricut to decorate my coping bin with quotes from my icons, like "I've seen enough of Ba Sing Se" and "I need you to be angrier with that bell".

If a flare-up is making you unable to eat or keep food down, consider going to the ER. A pharmacist once told me that since my eye flares can make me so nauseous that I cannot eat, then I need to go to the hospital when that happens.

Cola works wonders for nausea. I have mini cans of Diet Pepsi in my coping bin.

Shortbread is one of the only things I can eat when nauseous. Giant Tiger sells individually-wrapped servings of shortbread around Christmas or the British import store sells them year-round. I also keep these in my coping bin.

Unless it violates a pain contract or something, don't be afraid to go behind your doctor's back to get something they are refusing you. I got my cardiologist referral by getting in with a different NP at my primary care clinic than who I usually saw. I switched from Seroquel to Abilify by visiting a walk-in.

If you have a condition affecting your abdomen in some way (GI issues, reproductive problems, y'know) then invest in track pants that are too big. I bought some for my laparoscopy over a year ago and they've been handy for pelvic pain days, too. I've also heard loose pants are good for after colonoscopies.

Do whatever works, even if it's weird. I've sat on the floor of the Eaton Centre to take my pills. I've shoved heating pads down my front waistband to reach my uterus.

High-top Converse are good for weak ankles. I almost exclusively wear them.

You can reuse your pill bottles for stuff. I use my jumbo ones to store makeup sponges and my long skinny ones to hold a travel-size amount of Q-Tips.

Just because your diagnostics come back with nothing, it doesn't mean nothing is wrong. Maybe you were checking the wrong thing, or the diagnostic tool wasn't sensitive enough. I have bradycardia episodes even though multiple cardiac tests caught nothing. I probably have endometriosis even though my gynecologist didn't see anything.

You can bring your comfort item to appointments, and it's generally a green flag when someone talks to you about it. I brought a Squishmallow turkey (named Ulana) to my laparoscopy and they had her wearing my mask when I woke up. I brought a Build-A-Bear cat (named Blinx) to another procedure and a nurse told me that everyone in the hall on the way to the procedure room saw him and were talking about how cute he was. Both of those ended up being positive experiences and every person who talked to me about my plushies was nice to me. If you don't feel comfortable having it visible to your provider during the appointment, you can hide it in your bag and just know it's there, or if you're in a video appointment, you can hold it below frame in your lap.

Get a small bucket, fill it with stuff, and stick it in your bed (if you have room for it). I filled a bucket with Ensure, juice boxes, oatmeal bars, lotion, my rescue inhaler, etc. in October 2023 in anticipation of my laparoscopy and I still have it in my bed as of January 2025.

If your disability impacts your impulse control (e.g. ADHD, bipolar disorder), you should consider setting limits around your spending -- no more than X dollars at a time, nothing online unless it's absolutely necessary, and so on. Or, run these purchases by someone you trust before committing to them; I use my BFF groupchat to help talk sense into myself when I buy stuff.

Feel free to add on what you've learned about disability!

[killingthebuddha]

I was excited to die early. It wasn’t suicidal ideation or acceptance or resignation. It was a strange exhilaration, in light of my stage-4 cancer diagnosis. It was an astonishment to be so alive and so aware I was dying.

At age 33, I had a 4% change of surviving for five years. At first I was stunned quiet—no words to pray, no grief to articulate. Just a blank inside. I could flip a switch into clinical mode and try to wrap my mind around what was happening in my body: a tumor where my esophagus meets my stomach was growing and spreading, its cells saturating my liver with metastases. My first oncologist told me I would probably be on chemo for the rest of my life, and the purpose of the treatment was to keep me alive for as long as they could. Because I asked, he told me how I would likely die: My liver would shut down. It would happen pretty fast: jaundiced eyes, flapping hands, and then… I was relieved I would go quickly. I wasn’t afraid of dying, but I was terrified of suffering.

I imagined the moment you die to be like lightning behind the eyelids. I imagined the heart collapsing into a star. I know it’s not that beautiful. But I needed a way to fast-forward over sickness and get straight to death. So I fantasized going out like an earthshaking light. Poeticizing death was my coping mechanism, an odd hobby, a bit of a thrill.

I got excited to die. But I kept living: Two years on chemo, until a CT scan showed an enlarged lymph node. It lit up on the PET scan, a sure-fire sign of tumor activity. My second oncologist, a tiny force of might who plays in a women-over-50 soccer league, who sprints clinical circles around her male colleagues, took my case to the tumor board at Yale. She got me a spot in an immunotherapy trial, a cutting-edge study to test drugs that unleash the immune system on cancer.

The experiment worked wonders in me. The lymph node shrank to its normal size; the liver lesions did not grow or change shape over time. The clinical trial drugs seemed to be keeping my cancer cells at bay. But they put my immune system into overdrive. The treatment that was keeping me alive caused life-threatening side effects: inflammation of my GI tract and my liver. I had to stop immunotherapy. Was this the beginning of the end again? Apparently not: My scans kept coming back stable—not cancer-free. That wasn’t in the cards for me. But I’d gotten so enthralled with dying early, I felt all the more free: I was getting to live as if I don’t have cancer, without having to think about the long run, the slow decline of the body and mind. When I did get to the beginning of the end, I wouldn’t have to watch myself deteriorate for years.

I wasn’t on the anticipatory edge of early death anymore; it became a static fact I internalized. And I carried it like a secret gift, an unplanned pregnancy no one could see yet: something I didn’t know I wanted, until it was part of me. Sometimes that gift would well up inside me, widening and brightening my eyes. I felt magnified by dying.

When my clinical trial doctor told me I might have a normal life expectancy, it was a bit of a let-down. I knew I should be elated—maybe I was, but I couldn’t feel it. What about the gift that had become part of me? I was ambivalent, two-hearted. One heart was ecstatic. One heart was holding loss: I was glad to be getting my life back, but I wasn’t ready to let go of dying early.

*

The day I found out I could have a normal life expectancy, I was helping make funeral arrangements for someone whose life got cut short instantly: M., a 32-year-old Congolese refugee who died in a car crash in New Haven, Connecticut. I never met M., but I knew his family through the refugee resettlement agency where I work: his dad, who’d been a nurse for Doctors Without Borders in Burundi; his mom, the MVP of the refugee women’s soccer club, even when she was fasting for Ramadan; his little sister who would crack the whip on her high-school friends when they slacked off on their college applications.

I was helping the family plan a wake and a graveside service. They’ve seen so many die, but they were unfamiliar with the business of American funerals. I’d been through it a few times—two aunts, my grandparents, my dad. Those few days when the body’s in the morgue, and it hasn’t hit you, hasn’t shattered you, because you’re running around with so much to do. The way you can stave off grief with logistics—choosing the casket, ironing the outfit, picking up the death certificate.

I emailed a few minister friends of mine, asking if they know of any funeral homes in the area that might give a discount to a refugee family.

A rabbi friend wrote back, saying the Jewish funeral home would donate what is needed. He e-introduced me to J., “a mensch in the first degree,” he wrote. “J., Ashley’s a mensch, too.”

I read the rabbi’s email on my phone, in a recliner at the cancer center where I was going to have my CT scan. I almost forgot why I was there, until a nurse came to do my usual pre-scan blood draw. I had to put my phone down so the needle could go in. And while I was watching the blood fill the vials they would send to the lab, it dawned on me: the cancer that had once taken over my life, had become, in my post-immunotherapy stability, just a nuisance, a needle prick, a little interruption of my life’s work with refugees.

After the blood draw, I went up to the diagnostic imaging check-in desk. I got my hospital bracelet, on my left wrist, so I could write without encumbrance. I filled out the pre-CT form. I checked the no boxes next to the questions: “Have you ever had an allergic reaction to contrast dye? Are you diabetic? Is there any chance you’re pregnant?” I signed the form and wrote “self” in the blank next to “relationship to patient.” After about a dozen CT scans over the years, I know the drill.

When it was time to drink the oral contrast dye, an iodine solution they mix with Crystal Light, I knew I could get back to my funeral planning work. You have to wait an hour between starting to drink the dye and getting scanned. I turned that CT waiting room into a satellite office: I turned off the elevated TV that was blaring Dr. Oz, revved up my computer, and called the Jewish funeral home. “Hello. My name is Ashley. I’m with the refugee resettlement agency, and Rabbi…”

“Yes,” a man’s voice craned up, as if he’d been anticipating my call.

“Thank you so much for offering to help,” I said.

“Well, after what they’ve been through, I want them to be able to bury their loved one in dignity.” His accent was like the Coffee-Talk ladies from Saturday Night Live, the ladies who get easily verklempt. He wanted to donate a casket. “It can be simple, if that’s what they want,” he told me. But he wasn’t going to stick them with a pine box if they prefer something more high-end, like mahogany or copper. And what about a cemetery? he asked. I hadn’t gotten that far. “Well, he shouldn’t have to be buried in a potter’s field. Let me make a few calls. Hold on.”

“Hey, Rob. It’s J.” I could hear him talking from a different phone in his office. My rabbi put me in touch with this…” he hesitated, not knowing what to call me. “…this humanitarian girl. And she’s working with a family—they came over here from the Congo with nothing, and…do you have a policy for indigent individuals?”

A few calls later, he got a grave donated. Then, I got verklempt.

“…after what they’ve been through. And all the hatred going on in this country—I stopped watching after the State of the Union address, and I was a news junkie…I want to remain anonymous. But tell them that a rabbi and a Jewish funeral home director want them to know they’re welcome here.”

The minute I got off the phone with the funeral home director, a lab technician came to take me back for my CT scan.

Half an hour later, I got the results from my clinical trial doctor. It was the good-for-incurable-cancer news I’d been getting for the past three years: no significant change in the liver lesions, no evidence of cancer activity, visible on the CT. But this visit, he recommended that I get a PET scan, a more sensitive diagnostic image, as soon as possible: The PET could confirm his interpretation of the CT scans over time—that my cancer is inactive. And if it does, he would space out my CT scans to twice a year, instead of every three months. “Because you’re still young,” he said. “You’re only 39, and to scan you every three months for the rest of your life wouldn’t be a good idea.”

An oncologist has never said the rest of your life to me. I needed to clarify: “Because you’d be concerned about my exposure to the radiation from frequent scans for the rest of my life?”

“Yes,” he told me. He’s cautiously optimistic that I’ll have “a normal life expectancy.”

“That’s great,” I heard myself say. “Thank you.” An understated veneer over my bewilderment: I was expecting to die early, I didn’t say. And what a roundabout way to drop a bomb! I guess I was trying to play it cool and be polite.

I didn’t have the wherewithal to shift gears, much less paradigms of life expectancy. I’d adapted to my incurable-cancer reality, with a dogged plan: I would drink life to the lees and go out with a bang. What now? Sip and whimper along until some young people decide it’s time to take the car keys away? Maybe that’s my defense mechanism talking. Maybe my irritation with the way I got the disorienting news was an attempt to protect myself from disappointment if the cancer comes back with a fury.

I love my life, the work I get to do with refugees, the home I’ve made in a sanctuary city. I’m glad I may get to be here for the rest of a lifetime. But I’d been living year-to-year. I’m not used to having decades, maybe, ahead of me. I coped with cancer by falling in awe with dying early; now I have to settle down with a life that may not be cut short.

I’m living a medical miracle, but I know from my experience with cancer and my work with refugees, that a miracle of survival is not the end of the story. You still have to live, after you survive. You remember those who died, and those who are dying. And disasters keep happening: like M., who survived the Congolese civil war, only to lose his life in a car crash.

When a minister asked M.’s dad what they want at the funeral, he said, “We need to sing too much.” At the burial, there was wailing and singing in Swahili. As my favorite funeral liturgy says, even at the grave we make our song.

*

It’s Ash Wednesday, my favorite holy day. The one day a year it’s okay to go around with death on your face, an ash cross smudged on your forehead. It’s not about the cross for me; it’s the living-dying brightness of your eyes. You might be sitting across from your office-mate with one of those frazzled-cat hump-day posters on the wall between your desks. But the sign under your bangs tells us we’re dying awake.

It’s been two weeks since I was told I might have a normal life expectancy, after six years of dying early. Do the ashes feel different to me this year? I can’t tell yet. This morning, I did my usual Ash-Wednesday routine: I got up early and excited. I brushed my teeth, washed my face, and had a cup of tea. I pulled my hair back with a bobby pin so my whole forehead is open for the ashes, and left for a 7:30 mass. I was late, as usual. My mind wandered during the Scripture readings. I was eager to get the ashes. I felt bad that I don’t fast. And then it didn’t matter.

“Ashes to ashes, dust to dust,” soothed me like a lullaby. And from the time I got in line until I noticed I’d closed my eyes to receive a sign of dying, my mind was quiet.

It didn’t last long. Soon I moved on to thoughts of coffee, as usual. That’s what I love about Ash Wednesday: the holy suspension bumping into our usual ways. Eucharist and Dunkin’ Donuts. Kneeling and slouching. Ashes and crumbs on your face.

It makes palpable the gift cancer has given me: a way to touch the reality that our living and dying are happening at the same time. Cells are always rising and falling. Cancer is cell division gone awry, an over-abundance of life: Some cells divide so fast some bodies die early. Dust to dust, the stuff of us, before and after life.

At Easter, Christians say, “We celebrate the death and resurrection of Jesus Christ.” But Ash Wednesday gives us a long pause, a quiet halt, to celebrate the death. I hope Jesus rose and saw his mom and walked again with his friends. I hope my body will rise after I die to meet those I’ve lost. I so long to see them again, free of suffering, that I’ve chosen to believe in resurrection. But I want to celebrate death, and let resurrection, or whatever happens after life, be a mystery. Not a victory over death, but a way of dying that astonishes the body with light.

For now, I’ll savor the strangeness of Ash Wednesday. The way you forget and then remember you’re dying and living at the same time. The way you startle yourself in the rearview mirror, ashes and crumbs on your face.

[grouch314]

Doctors also dismiss people based on age and gender. I was 18, had gained a bunch of weight rapidly and had chest and back pain so severe I could hardly stand. I saw two different doctors.

My GP said it was 'probably nothing' after asking if the pain came and went. I told her sometimes it was worse and sometimes better but it was always there. She didn't even examine my abdomen or back. If she had just asked me to lift my shirt, she'd have seen how massively swollen my abdomen was.

The next doctor said I'd pulled a muscle. I thought I was just getting fat so had been working out more and the doctor assumed I had poor technique.

I was 18 and otherwise healthy. I was the fittest I had ever been in the year before getting symptoms. I worked out 3 days a week, cycled 100 miles per week, did strength training. I had no family history of any health conditions besides asthma which I'd been tested for as a child.

Two weeks after I saw my GP, I was in A&E because I couldn't breathe. I was gasping for air, couldn't breathe in properly and needed oxygen constantly in order to not pass out.

Even then, the first consultant I saw insisted it was asthma, despite me having been tested for it and never having had any symptoms of asthma. The next doctor ran 4 pregnancy tests in a row when they kept coming back negative because I was so bloated that I looked pregnant. I had told him that I hadn't had penetrative sex before. He didn't believe me.

Finally I saw a doctor who believed me. She was a first year junior doctor and she saved my life. She ordered a whole battery of tests, including a CT scan to rule out a pulmonary embolism. It was that CT that detected the 15 litres of fluid in my abdomen that meant that my lungs were being crushed.

Within a few hours, they had drained the fluid and I could breathe, my heart rate went back to normal and the pain went.

I had cancer.

Specifically I had stage 3C ovarian cancer. If that doctor had been like the others and ignored my symptoms based on my age, I would have died.

Doctors become jaded. They assume that a healthy 18 year old can't have ovarian cancer because it is almost unheard of in people under 40. I have met hundreds of young people with cancer in the past few years and I have never met, or even heard of, someone else with ovarian cancer under 40.

If my GP had taken my pain seriously, perhaps it could have been caught sooner. Perhaps I wouldn't have lung damage, heart damage, chronic pain, a real fucked up GI tract and a distrust of doctors.

Sometimes medical students come and talk to me because of my complex medical history. They want to learn from my case and how to do better for patients like me in the future. I tell that about the doctor who listened to me, who believed me. Doctor Baker saved my life. I tell them to be like her.

You are Dr. House’s nightmare patient to diagnose and I think that’s very sexy of you 😜 (in seriousness, so happy to see you’re improving bit by bit!)

I like to think that House would be aware of b12 deficiency and would have checked for it before checking for Lupus, but considering somewhere in the region of 12-15 doctors over the course of 20 years missed it, I’m not so sure.

Thank you! It’s been a weird year for me, but I notice the changes. Even when I have setbacks, it’s easier to recover now.