Thread by @jencurran

Wanna hear a crazy story? I’m a new mom & I had protein in my urine during and after pregnancy, which is bad. A doctor told me to “lose weight” & it would go away. Didn’t want me to see me back for months. So I got a second opinion. Turns out I have bone marrow cancer. THREAD: 1/

I’m 38 years old. My husband and I just had our first baby. A healthy beautiful girl named Rose. We‘re over the moon. She’s funny and determined. The dog adores her and the cats seem to like her too. She loves water and music... ANYWAY! 2/

At the end of my 2nd trimester they found high protein in my urine and I was diagnosed with preeclampsia. 3/

I was put on bedrest for 3 months. I did puzzles, watched West Wing (again) and Breaking Bad (again) and generally lazed around for days on end. Under any other circumstance this would be my ideal lifestyle. 4/

Everything stayed stable for the rest of the pregnancy. But my OB was unusually worried about the protein in my urine. It was too high to match up with my other preeclampsia symptoms. 5/

She insisted I get checked by a kidney doctor after the baby was born. Hopefully the problem wouldn’t persist but we had to make sure. I had a pretty easy labor and our baby made it to the world no problem. A few weeks later I made an appointment with a kidney doctor. 6/

I didn’t ask for a recommendation. Since I had a new baby to lug with me, I assumed it would be easiest to go to a doctor covered by my insurance, near my house. Whoops. 7/

When I met with the kidney doctor, the protein was higher than it had been in pregnancy even though we were a few months out. Not a good sign. 8/

[Spilling protein into your urine is bad for your body, especially if it’s high levels. It can irreparably damage your kidneys and it usually indicates something more serious is going on.] 9/

But the doc wasn’t concerned. “It can take up to a year for things to return to normal after pregnancy.” I didn’t like that answer. It didn’t seem typical for my body. 10/

I had already recovered from the birth in lots of other ways. Did my feet swell up to the size of two gigantic Italian subs for a whole 2 weeks post labor? Yes! But all that was gone now. I felt good. 11/

The doctor blinked at my lab results. “Can you start dieting and exercising? Try to lose some weight?” Hmm. Interesting. I was familiar with this move by a medical professional. The old “lose weight” diagnosis. 12/

“Okay,” I said.
“If it comes from a box it’s not good.”
“Mm-hmm,” I said.
“Yes. Go lose some weight. Then the protein will go away. Come see me again in 4 months.” 13/

I wanted to believe her but it didn’t feel right to me. Plus she was almost, like, talking past me. Asked me a question about breastfeeding and literally didn’t listen to the answer. Responded as though I said the exact opposite of what I‘d said. Not listening. Not present. 14/

I went home and spent a couple weeks trying to decide what to do. I stared into the fridge wondering what to eat, hearing her words in my head. Diet. Exercise. Nothing from a box. Lose weight. 15/

After gaining a bunch of weight in college I lost 115 lbs in my early 20s, with portion control and exercise. I worked very hard to do it and kept the weight off for like 15 years. So I know wellness and I know food and exercise. I definitely know weight loss. 18/

(Oh good I wrote that that was tweet 18 and it wasn’t. Oh good.) 17/

Before I walked into that doctor’s office, at this new phase in my life, I had already been feeling for a long time like I just didn’t want to focus on my weight anymore. 18/

In fact, in 2015, my good bud @adamlustick and I developed a documentary called “F-A-T” with a TV network. It didn’t end up going to production but we learned a lot about the subject matter. 19/

It was basically all about how toxic diet and weight loss culture can be, and specifically about how much it holds women back. I was, and still am, passionate about the subject. 20/

So that’s how not into weight loss I am. That’s how not into lose-weight-and-the-problem-will-go-away I am. And even though part of me wanted to jump head first into that doctor’s weight loss prescription, I knew in my gut something else was wrong. 21/

Finally I decided to get a second opinion about this protein which would supposedly disappear with weight loss. This time I got a recommendation for a kidney doctor from my OB (the one who was first concerned about the protein.) 22/

I’m saying protein a lot. 23/

The NEW kidney doctor took one look at my lab tests and said, “This is not good. And there’s nothing diet or exercise can do to touch it.” I was surprised BUT ALSO NOT. She was clearly concerned. She told me we needed to biopsy my kidneys. And I hoped for the best. 24/

For the sake of getting to the point, you’ll just have to trust me that a kidney biopsy is not fun. Do not recommend. Would not endorse. Unsubscribe. 25/

When the preliminary biopsy results came back, they hadn’t found anything wrong. Yay! But then more detailed results came back a while later, and it showed something bad. I had too many kappa light chains in my blood. 26/

[As far as I can tell, kappa and lambda light chains are made by your immune system. If your body starts making more of one or the other, the extras can start showing up in your blood, urine, organs, etc., and it’s not good.] 27/

So this new kidney doctor referred me to a hematologist-oncologist who then biopsied my bone marrow. Another experience I highly suggest you avoid. You’d have more fun at a kidney biopsy. 28/

WELL 🥁🥁🥁 the bone marrow biopsy came back and I have multiple myeloma! Bone marrow cancer. 29/

Shocking. Gut wrenching. I have a 5 month old baby. I’m not even 40 years old. I’m not even caught up on Big Little Lies. 30/

No other tests came back abnormal. I wasn’t and still am not feeling unwell. They barely found it. If I hadn’t had the baby, they wouldn’t have found it until it was possibly way too late. 31/

And if I hadn’t gotten a second opinion? Duh. I‘ll already be weeks into chemo by the time the followup with that first kidney doctor rolls around. And who knows how much longer it would have taken her to diagnose me? 32/

So here we are and here we go. I’m 38 and I have a new baby and I have bone marrow cancer. Definitely not what I expected. Definitely don’t wanna have to deal with this. But I’m going to beat it. 33/

I’m not that nice and I don’t fuck around and I simply refuse to let this shit take over my body. I have a very very lot to live for. (You should see my baby.) 34/

The advances in treating this particular cancer have been incredible in the last decade. I’m so lucky. I’m also so so deeply grateful for and humbled by the support we’ve gotten since this began. It’s incredible. 35/

From friends and strangers alike, we’ve received beautiful gifts, donations, resources, advice, been introduced to other young people who have multiple myeloma. 36/

We’ve been spending quality time with our sweet kid and our family, and my husband and I are feeling so loved by our village. I’m truly ready to tackle this thing head on. Chemo starts August 13th 💪💋 37/

TBH a bunch of other crazy shit has happened since the diagnosis that has been a stark reminder that a) this American healthcare system is effed beyond belief and b) women’s health STILL isn’t a priority for a lot of the medical field. But that’s another thread. 38/

Here’s the moral of this particular story. Lose weight if you want to. But if you think something is seriously wrong with your body, and a doctor tells you weight loss is the key to fixing it, get a goddamn second opinion. 39/

Also, advocate for yourself. Get to know your body, trust your body, and listen to your instincts. And don’t be intimidated to question your doctor! This last one has been really hard for me but I’m getting better at it all the time. 40/

Oh yeah, and here’s one more gentle reminder to avoid bone marrow biopsies whenever possible. Okay. That’s it. Thank you for coming to my TED talk. Feel free to grab a cookie and a water on the way out. 41/41

Oh VERY cool that there’s a typo in the first tweet. Very cool.