The Story

Here I am going to tell the tale: from accidental diagnosis to the start of this blog.

For the curious, dashing, and dauntless (and/or whomever cares to read this novel). eats:

The Basically It.

(I call upon Brevity, though I know not what answers):

May 23, 2013. I go to the ER, finally dragged there after the day spent hovering in chest pains that were making it increasingly difficult to breathe. It's the day of my final dress rehearsal at my job, you see. I don't want to skip out or make a big deal out of nothing. But the chest thing wasn't going away, Ed tells me "Your body i telling you that something is wrong" so he shoves me in his car and we go. In an incredible feat of memory, the ER nurse recognizes me (out of context, to boot. Her two children took my audition workshop three months previous to this.) and says "Don't you have a big show this weekend?" She takes my blood, and sends it down to the lab. 

(as an aside: my mother asked the nurse a few weeks later why she decided to take my blood and send it down to labs. She said that she knew it was a big weekend for me. And if I was sitting in her ER room, there must be something really wrong. So she decided of her own choice to take the blood. Thank you, Jen.)

The doctor determines I have pleurisy (inflammation of lung membranes), tells the nurse to call and cancel the blood work. By the time she calls down they say (I imagine), ‘Yeah so, we already started it, so we’ll just let it do its thing rather than cancel it. …Also might want to look at this.’ I didn't know any of these things at the time, I'm just sitting alone in the ER. Some times passes. Doctor comes in and asks if I've been having any night sweats. I look at him in the way you look at a doctor who asks if you’ve been experiencing a symptom you hadn’t realized until now was a symptom, and answered a timid yes. He leaves and comes back several minutes later to tell me my blood counts are extremely abnormal. "Okay." Your white blood cell count is very very high. "Okay?" I'm sorry to tell you but I must be frank, it is very likely we are looking at Leukemia here.

Even now I can't conjure the feeling I had at these words. Leukemia. Cancer. Death.

Let’s be real here: little bald children dying, it’s what you think of. 

He wasn't unkind, just straightforward. And I burned hot and cold, I felt far away from my arms and hands piled in my lap. My first thoughts were of marriage, believe it or not (I’m still in shock about that one. brief as it was, I am compelled to be honest.), then almost straight away to my friendfamily gathered, without me there, and I imagined my absence, but most of all I grieved for my future with them so abysmally that my stomach dropped out.

I had spoken with my mother about 30 minutes prior to this moment, and had told her she didn't need to drive up to be with me, that I was fine, I'd just call a roommate for a ride home after I got out. I now called her again, and agreeing with the nurse, I couldn't tell her over the phone. I just said "It's actually okay, if you come, mom." She replied, "I'm already halfway there."

My mother arrives, I ask her to sit down next to me. I struggle to say it. She knows something is wrong. Saying it out loud makes it real. I say it. She looks in my eyes, nodding, yes. okay. we are going to do this. we are going to do what it takes. yes. okay. alright.

We transfer to Brigham and Women's hospital that evening. The ambulance ride is a blur except for a few stark impressions: asphalt, lights, shortness of my breathing, Zach the metal-guitar-playing-chip-and-dale-failing-future-paramedic-EMT holding my hand and telling me the adrenaline from CPR is gone for him. In Brigham's ER he asked if I wanted him to wait for my mom to arrive, held both my hands, and told me I'm going to kick this thing in the ass.

Lying in a bed in the main ER hallway, I saw a nurse give a man a paper flower in the room across from me, before she left for the night.

10 vials of my thick pomegranate juice.
Hold your arm down for the fluids.
An older patient is discharged, as he passes me, he says "nice ink"

We spend two days in the B&W ER for of lack of beds. I spent most of the first few hours wondering how you even spell Leukemia. Add to the mix an extremely fun bone marrow biopsy, X-ray, and CT scan; and approximately 4,000 hours of body-disintegrating headaches and chest pains. A hilarious woman I could only hear through the curtain of my room: looking for her clothes and asking a gentleman for a ride, and the gentle voices trying to escort her back to her room. The things you hear through curtains…

Then comes Mary, my tiny 700 year old smoker voiced roommate, and we’ve been watching TV infomercials together for over 13 hours. I say we, because unfortunately being 700, she needs to have the volume up pretty loud in order to hear it (and I don’t think she’s actually watching!). For three easy payment of $33.33, I wish I could pay her to turn them off. 13 hours of shark sonic duo and brightly colored carpet stains. Ah, 700 year old Mary who feebly threatens our nurse that she is going to light up a cigarette and calls her daughter to bring her back scratcher (“not your backscratcher, it’s too bulky, the other one, mine”) hair clips, and nail polish. A male doctor warns her that her feet are bad feet, and that they keep warning her about those legs of hers. He says, “Hopefully you won’t have to see me again, but if you do, I’ll be here to help you out.” She says “I’ll run the other way.” Atta girl, tiniest 700 year old Mary.

Then I get my own room on the oncology floor. Fast forward another few days, waiting waiting waiting for marrow biopsy results and diagnosis. Waiting. They think it's CML. Then they are leaning towards AML. They have to have a group gather to talk about it. Turns out it's a hybrid type between the two: called CMML-2. Sort of a rare one. Of course, because why do anything the normal way, Bekah. It’s essentially CML with twinges of AML behaviors. The 2 tacked on to the end represents the percentage of blasts (bad cells) in the marrow; I’m in the second, more advanced group. It has the potential to progress to full on AML, but for right now it’s still operating as CMML-2. So that’s good I guess. Not the best news, we were hoping for CML, but not the worst news either.

I would like to take a moment here and mention that I thought I had CML for weeks, even after diagnosis came in, just because these things are unclear and I knew absolutely nothing about any of it. The doctors have been good at explaining things pretty clearly, but it’s probably also hard for them to realize what exactly they need to explain, because it’s all old hat to them at this point. They’ve seen it all and understand the nuances. But I finally figured out that there is a difference between CML and CMML. hurrah.

So I stayed in the hospital for 8 days, started chemo in the last two. For the next three after I got out, I went into Dana Farber for outpatient treatment of this low-grade chemo. They decided to do this low chemo dose to work on lowering my blast count and preparing me for bone marrow transplant. We’d do two rounds (5 days once a month), with one or two visits on weeks without chemo for labs etc. Then after two months, we’d do another bone marrow biopsy to check on the blood factory. Then do more chemo, or start preparations for transplant, depending on results.

Stem Cell transplantation is the only way to cure this disease. So I need a donor. We checked to see if either of my sisters are a match for me, and sadly they weren’t (there’s only a 25% chance that any sibling will be a match, but we were hoping!). The initial cheek swab came back (PLUG: so easy! everyone do it! it’s free to sign up! AND the actual donation of stem cells is like giving blood! SAVE A LIFE: bethematch.org), which has the ability to define 6 of the 8 HLA numbers (read: DNA numbers). Each sister came back with a 3/6. And get this, the complete opposite 3/6 in each of them. I did ask if a DNA cocktail was an option…

So we wait for, essentially, number crunching to reveal a DNA match via the bone marrow registry. This process usually takes 2-3 months, as they munch through thousands of registered people, find 6/6 matches, call them in, do further blood work for the remaining 2 HLA numbers, confirm match, and ask the person if they are willing to donate, confirm life saving. It’s a lot of things to do, and this is a world-wide registry. Less than 2 months after my sisters’ negative results, I got the call after work. They found him. My mystery man in shining armor. He’s 30. That’s all the information that I know. He could live in Paris, he could live in Salem MA. He probably only knows I’m a 25 year old girl. And he’s decided to step up and save my life. I hope that I will be able to meet him one day, give him a kiss on the forehead, and give his internal organs a run for their money for how big a hug he’s gonna get. This man is going to save my life. He's going to save my life. Baby I can see your halo…

Okay, so, transplant. What the heck does this mean? Basically, my Leukemia is cancer of the immune system, the one I've built over my life has backfired/gone cray, and needs to be stopped before I’m full up on immature insane Quasimodo cells. Cancer is essentially an invasive fast reproducing type of cell that is mutant in some way—often in the form of tumors, but in my case it’s referred to as “soft tumor cancer” because it’s in my blood and there’s no real 'tumors' forming (right now, at least). In some ways this is good, Leukemia is generally very responsive to treatment, and usually has high success rates, even for cure. So what the transplant essentially involves is this: Induction Chemo, which is intense beyond all reason, to put my cancer into remission (no visible cancer). That will take at least a month in the hospital. Then I get a week out. Then I go back in and we do CRAYCRAY amounts of killer poison chemotherapy for 6 days, I get one day off to puke my brains out/party hardy, then an anti-climatic bag of stem cells from my mystery man is hung on my IV, and enter my body via IV. Then the most insane part of this magic happens. The stem cells (they’re stem cells: able to become any cell, un-programmed, but matching my immune system DNA whatwhat?? #SCIENCE) enter my body, spread their tiny metaphorical arms (probably including some jazz hand flair) and decide that they need to be bone marrow. Then they swim to my bones, set up camp via How to Be a Cell basic training/magic and BECOME MY BONE MARROW. Then, as the infantry is trained to do, they cleanup the rest of the immune system left ravaged and pillaged by the chemo soldiers; destroying the last of the cancer, and taking over my body and re-growing anew. This will take another month in the hospital, at least.

It sounds simultaneously magical and also maybe simpler (who am I kidding simple?!?!) than it will actually be, in the end. The process can take a while, as the two immune systems duke it out. The planned outcome is of course, that my old immune system gives up the ghost, and we have 100% donor blood coursing through my veins. I may even get a new blood type, if my mystery man doesn’t happen to be A positive. For the first month (and continuing into the next 3 as well) I’ll be on heavy immuno-suppressants as we attempt to trick the donor immune system into believing that I am my donor’s body. Even though the DNA is as close a match as we can get (and we can get pretty dang close these days!) the immune system cells still have their way to decipher that I’m not my donor. I mean, it is their #1 job to delineate and destroy alien cells, which in this case is my whole body. So heavy drugs to keep the fighters at bay until they get a little more adjusted to their new home.

So the science experiment has hopeful beginnings, but there are dangers, number one fear being the Leukemia coming back in spite of everything. This is my greatest fear, and even typing this out, my heart is in my throat, beating heavily. Besides that, almost everyone who undergoes BMT exhibits some sign of Graft versus Host Disease (GvHD) along the way. Hopefully not within the first three months, this is called acute GvHD, and can be very dangerous—it can be evidence of a mismatch, which can be pretty bad news… But we’re hoping for the best case scenario, which is none of that. But people tend to experience chronic GvHD throughout the rest of their life, which is basically an auto-immune disease that can take many forms: liver problems, eye problems, skin problems… etc. It’s just because there’s usually no way to completely fool the immune system into believing I’m my mystery man (for good reason, right?). But we’ll see, every case is different. I am hopeful.

For now, as I write this, I am in the hospital for the Induction Chemo portion of this journey. Already went through some real intense chemo for 7 days (24 hours a day) combined with a disgusting thing called "IV push" once a day of this horrible bright red chemo (like, cherry koolaid. seriously) that makes me barf. And now the waiting game, to see if I’m in Remission (no traceable cancer!) and for my blood counts to return to a normal level. As of right now I have very low white blood cell count (a normal person is around 10, I came in with 78, and I’m currently around 0.5) which means my immune system is very weak. So we wait for counts to return, I get a week off at home to live it up (!!!) and then it’s back in for the (creating a word here) intenser chemo, and then my grand re-birthday. Celebrations are both current and to come; I revel and dance and paint the town over each small victory, every day, as best I can.

So thanks for joining in the grand comedy of my life, I truly believe that mine is. Thank you, for even just the small bit of reading any of this story. I do not underestimate the time anyone gives to me. I carry it all, as kindness and light and love. Thanks for reading; for at least spending the last few minutes in dedicated thought toward me, I think that’s prayer. Every person I meet is a prayer. Every blood transfusion, every hospital visitor, every letter, every picture, every veggie burger from outside, every laugh, every moment, every thought. And prayer is the kindest thing a person can do for another.