AML, Kitty, and Synchronicity July 15, 2013 9:29 AM   Subscribe

With all of the hard-to-hear news in the world, I wanted to share a moment of MetaFilter bliss. [It's not a pony request or the usual grarr grarr grarr, but I had nowhere else to put it, so I hope you don't mind]

tl;dr versions: Strangers meet because of an AskMe about acute myeloid leukemia (AML) and reconnect in a flurry of favors

Back in 2009, I responded to this post about AML from litterateur (who, sadly, died of her disease not long after her post). Not long after my response the initial post, duckgirl sent me a MeMail with an AML question because her dad was sick with this terrible disease.

She and I ended up exchanging some MeMails, and then for expediency, we started to talk on the phone so that I could help answer her questions. We talked 3 or 4 times over the course of his illness. I had, at the time, left clinical oncology and was working in drug development, so providing direct assistance to family members of people with cancer was something that I enjoyed doing because it provided a direct link back to patient care. Plus it was pretty neat that strangers could meet through MetaFilter and help one another. Duckgirl and I happened to actually bump into each other face-to-face a year later in Logan Airport which was one of my first IRL experiences with someone from MetaFilter.

Fast forward a few years and my family and I moved to Seattle where I took a leadership role at a new drug company. Not long after, I think via "another social network", I learned that Duckgirl was also planning a move to the area. My wife and daughter and I had her over for dinner and she actually helped us out earlier this year by house/pet sitting for us.

A few weeks ago, I asked her to house-sit again for a few days and she cheerfully agreed but said that she couldn't help us for the full duration because she was flying to LA to pick up her cat, who had been living with her brother for the past 8-9 months. I told her that I had to go to LA the next week and would be happy to be the courier for her cat, which worked out beautifully.

What make this story so special is that the reason that I was going to LA was to open up the first site for a brand new Phase 1 study of an entirely new AML drug that I'm leading the development of, and that the hospital that I was going to was the hospital where Duckgirl's father was initially treated for his leukemia. It's pretty remarkable that in the course of my 12 hour visit to LA that our two lives touched each other in multiple ways. Bringing her cat to her new home straight from the airport, fresh with the excitement of being on the cusp of taking a new AML drug into the clinic for the first time was pretty special, and made both of us really appreciate how interconnected we are and can be (with MetaFilter as an intermediary).

So thanks, MetaFilter, for once again facilitating connections between strangers that allow us to take things that are difficult and painful and turn them into something special.
posted by scblackman to MetaFilter-Related at 9:29 AM (43 comments total) 59 users marked this as a favorite

Wow. Awesome story, in the literal sense. MeFi seems to lend itself to these sorts of things.
posted by introp at 9:32 AM on July 15, 2013


What a terrific story. Here's hoping the drug trials go well.
posted by yoink at 9:37 AM on July 15, 2013


Hooray! Good luck!
posted by Glinn at 9:40 AM on July 15, 2013


A nice story that even managed to include cats. Well done!
posted by Deathalicious at 9:50 AM on July 15, 2013 [5 favorites]


But not pictures of the cats. Not well done.
posted by jacquilynne at 9:53 AM on July 15, 2013 [6 favorites]


(Story is sweet and awesome. It's just that pictures of cats are also sweet and awesome.)
posted by jacquilynne at 9:53 AM on July 15, 2013


Here: pictures of a cat.
posted by amtho at 9:55 AM on July 15, 2013 [1 favorite]


I have a picture of the cat, in its carrier, which I can dig up. As evidence of the amazing karma incurred by this whole thing, the cat (and I) both got upgraded to first class on the flight back from LA.
posted by scblackman at 10:02 AM on July 15, 2013 [23 favorites]


This is really splendid.

I found it very touching that this shows how the ripples of litterateur's life continue, building connections and goodness in their wake.
posted by batmonkey at 10:05 AM on July 15, 2013 [10 favorites]


That is great, and now I feel all fuzzy. Thanks!
posted by rtha at 10:06 AM on July 15, 2013


Thanks for being strangers who are willing to trust and connect. :)
posted by 26.2 at 10:27 AM on July 15, 2013


That is a great story after what's been a dismal couple of days.

Has it really been that long since litterateur's passing? Her story encouraged me to sign up for bone marrow donation and I think of her every time I get the update email from the Bone Marrow Registry.

*Raises a glass to absent friends.*
posted by arcticseal at 10:29 AM on July 15, 2013 [5 favorites]


What a lovely story! Thanks for sharing it.
posted by goo at 10:49 AM on July 15, 2013


That's really neat, thanks for sharing it.
posted by mathowie (staff) at 11:00 AM on July 15, 2013


Really lovely story. Two things:

1) How do you KNOW you've run into a MeFite at the airport? Had you seen pictures of each other before?

and

2) Last year I was in the hospital and my roommate was a woman who was in the process of being diagnosed with AML. She was one of those bullheaded, healthy, strong types who hadn't been to the doctor since her teenage kids were born, ran a successful business and a household, and generally was miserable to be stuck in the hospital (she chatted on her cell phone and parroted the same complaints about being there to different people for hours every day).

Meanwhile, there I was, 20 years her junior, the type who has been sick in a various ways my entire life and never went more than a few months without a doctor visit. I remember despising her incessant phone calls and the fact that she didn't appreciate how GOOD she felt (she only mentioned that as a footnote in her phone calls, "They are keeping me here, and it's ridiculous, because I feel FANTASTIC, like an 18 year old!") while I was in constant agony. I remember hearing her oncologist visit and explain the course of treatment she was going to endure, and thinking "I wish there was a standard course of treatment for ME that would last eight weeks and then be OVER."

We chatted a few times and I remember overhearing her speaking quietly with my mother while I was "sleeping," saying how bad she felt for me and that she hoped I would feel better soon. After that I felt guilty about (inwardly) complaining about her so much, and after I was discharged I called the hospital and asked to be connected to her room, to see if she was still inside, if she was still OK. I didn't intend to talk to her, just to see if they would connect me (implying she was there). I tried a few times with a few operators and they were never able to find a patient with her name, though to this day I wonder if they had gotten the spelling correct (a lot of places where you could go with a double or single consonant, things like that).

It wasn't until a few months ago, finally in much better health, that I was reading the fantastic The Emperor of All Maladies that I recognized the treatment protocol her doctor had prescribed and realized how horrifying a diagnosis it was and how LUCKY I was that I was merely stuck with my miserable chronic illness.

I still think of her and wish I had gotten her name right so I could somehow find out if she's all right. I still feel bad for wishing her ill from my hospital bed. I hope she did well.

Cheers to you, scblackman.
posted by telegraph at 11:13 AM on July 15, 2013 [5 favorites]


Thank you for posting this. I needed something like this today. There are so many things wrong in the world that it's good to have examples of little things that are right. And big things, like the Phase 1 study of your new drug. That's pretty big.

It would be great to see a picture of DuckGirl's cat, too.
posted by janey47 at 11:22 AM on July 15, 2013


I love this story and I give an offering of freshly grown tomatoes to the FSM to see your drug make a difference in the lives of people with AML. I have a friend here in L.A. who is suffering and my brother-in-law lost his dad years ago to the disease. Huzzah.
posted by Sophie1 at 11:34 AM on July 15, 2013


Her story encouraged me to sign up for bone marrow donation and I think of her every time I get the update email from the Bone Marrow Registry.

Me too. Thanks for sharing the story scblackman.
posted by jessamyn (staff) at 12:57 PM on July 15, 2013


AML is bad news, and I'm glad you're working on a new treatment. Thanks for posting this; it is always good to hear nice Mefi stories.
posted by LobsterMitten (staff) at 1:16 PM on July 15, 2013


:-) Surely smiley was invented for happy stories like this one. Thanks scblackman for posting, but even more for doing all the good things. May your research prosper.
posted by Cranberry at 1:54 PM on July 15, 2013


Keep fighting the good fight, sir.
Miracle drugs like the one you're working on gave me an extra year with my mom and that really would have been longer, much longer if not for GvH (and that fucker c.diff). We know now that with the protocol she was on (dasatinib, for ph+ multi-lineal ALL/AML), she could have not needed the bmt, at least not right away.
Rock on, and thanks for sharing.
posted by ApathyGirl at 2:08 PM on July 15, 2013


Another SGN drug? Yay! The last one is working really well for a lot of my patients. I hope this one prospers as well.

What a nice story!
posted by SLC Mom at 2:18 PM on July 15, 2013


I'm glad that great minds are working on new treatments for cancer. I'm glad that that at least one of them has a great heart.
posted by double block and bleed at 3:10 PM on July 15, 2013 [1 favorite]


awww, thanks for posting.
posted by windykites at 3:32 PM on July 15, 2013


I feel all warm and fuzzy and happy for everyone involved. Yay!
posted by cooker girl at 3:41 PM on July 15, 2013


Is there a script for Greasemonkey that could be useful in connecting me to flurries of favours, or perhaps a novel ADC that will get me there?

Great story, good medicine. Thank you and congratulations, too.
posted by de at 5:53 PM on July 15, 2013


What a lovely story. Thank you for sharing it.
posted by bibliogrrl at 6:44 PM on July 15, 2013


::::::::::::::::::
::::::::::::::::::

(those are goosebumps)
posted by Corvid at 6:45 PM on July 15, 2013 [1 favorite]


That's wonderful, scblackman! Good luck with the Phase 1.
posted by zennie at 7:27 PM on July 15, 2013


scblackman: "the cat (and I) both got upgraded to first class on the flight back from LA."

Whew! What a relief. I was envisioning the horrors experienced by a potential "cargo hold" kitteh.

Also, great story! So nice to hear about this to help balance out against all the horrible news lately.
posted by InsertNiftyNameHere at 7:28 PM on July 15, 2013


I love MeFi.
posted by radioamy at 7:40 PM on July 15, 2013


If the pony requests for favourite folders were granted, I'd have a one called "In Case of Emergency: Read These to Restore Faith in Humanity." And I would put your story in it.
posted by hurdy gurdy girl at 7:40 PM on July 15, 2013 [11 favorites]


Wow, great story.

And the ripples continue - this reminded me to book my next blood donation appointment.
posted by greenish at 3:14 AM on July 16, 2013


This story is lovely. I hope the trials go well, scblackman.
posted by EvaDestruction at 7:10 AM on July 16, 2013


I love this. I needed some happy and this makes me VERY happy today. Thank you.
posted by mochapickle at 9:10 AM on July 16, 2013


Back in 2009, I responded to this post about AML from litterateur (who, sadly, died of her disease not long after her post)."

Yesterday, that link to that AskMe post by litterateur and scblackman's answer led me on a several-hour diversion, mostly on Wikipedia, reading about bone-marrow transplant, myeloablation, immunosuppressant drugs, graft-versus-host disease, superoxides, ROSs, the mitochondrial permeability transition, and more and it was all extremely interesting.

But also, I read some of litterateur's comments and then followed links to her CaringBridge page and then read the journal entries for the last two months of her life. It broke my heart, but I'm glad of it. She never was able to have the transplant — her leukemia advanced too quickly and they weren't able to reduce it enough with the chemo to make it possible to do the transplant.

What I got out of this post wasn't what you intended, sblackman, but I thank you for it.
posted by Ivan Fyodorovich at 9:13 AM on July 16, 2013 [1 favorite]


Great story sblackman...and btw, I hope you folks are working actively at developing a companion diagnostic for the drug. I know this is becoming more common but in this day and age, with gobs of computational resources and a lot of molecular data, particularly for leukemias and tissue matching, this should be a sine qua non!
posted by BillW at 9:31 AM on July 16, 2013


Godspeed with the trial, scblackman.
posted by maryr at 2:02 PM on July 16, 2013


Blurry picture of kitty in its carrier in first class on an Alaska Airlines flight from LA to Seattle, as promised.

Thanks, everyone, for the nice words of support. They are truly appreciated.
posted by scblackman at 6:32 PM on July 16, 2013 [3 favorites]


That is a great story, and I like the kitty picture, too. Thanks for posting this.
posted by gingerest at 10:22 PM on July 17, 2013


I of course remain in the minority but I strongly feel this story would have been better with dogs. But all the same, great story and here's hoping your trial is a wild success.
posted by allkindsoftime at 12:10 AM on July 18, 2013 [1 favorite]


Scblackman, what is your exact role in the drug development process? Are you a CMO?
posted by benzenedream at 9:17 PM on July 18, 2013


This is just so lovely it brought tears to my eyes. Good luck with the trials. As someone who has had to move pets to be with sick family members under great duress, thanks for caring for that kitty in a difficult time, too. People talk about the "Seattle freeze" for new comers. You're helping to melt it. Memail me if you need a pinch hitter for cat sitting, too. I live in Queen Anne and am ruled by a cat overlord of my own.
posted by sweltering at 2:00 PM on July 22, 2013 [1 favorite]


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