The Diagnosis Within the Diagnosis

Photo: Idea go

Peeps, I don’t even know where to start. But I also know that I’ve been silent for far too long.

I am no longer at the job that I came to the US for. That ended in August. On my own terms. Don’t want to say much more, because I’ll say too much.

Right before my insurance ran out, I went to the doctor because 1) My body was behaving in funky ways, and 2) I figured that I might as well go, since I haven’t had a full check-up in over ten years. I wasn’t prepared for what came next.

My blood tests came back with everything cool, except for one thing. My platelet count was too high. More tests. I started to sit in waiting rooms at the Oncology Department of Kaiser Permanente in San Francisco without R holding my hand, but with a hospital bracelet around my wrist. A good friend of mine who is wise in these ways explained to me that when you hit the Oncology floor, you get those bracelets every time. Because something could happen to you physically at the appointment, and they need to have your medical info at the ready.

Right before I left to go and visit R in Mexico for two weeks, literally the morning of my flight, my Hematologist/Oncologist emails me to let me know that the test results show that I have a genetic mutation-JAK2 V617F for those of you who know what I’m talking about. However, chronic leukemia was ruled out as a result of those tests.

I get on the plane. I’m a little bit of a zombie in Mexico. I see some good friends, and I spend a lot of time simply snuggling with R while watching TV. Our cats sat around us, tails flicking in the heat.

A bone marrow biopsy and aspiration was set of for my second day back from Mexico. The procedure involves lying on your stomach, and the doc cracks out the local anesthetic. A needle goes through the top part of your butt, and across your body into your hip bone. The biopsy involves removing some marrow from the hip bone to study. The bone marrow aspiration involves removing liquid from the bone marrow of the hip bone for analysis. My friend S sent me a package before the procedure. It had many magical and healing things in it, and I’ll be forever grateful that she sent that care package to me. My friends C and RM were in the waiting room, to drive me home. I was very grateful for that as well. My doctor was a rock star.

People checked in on me from all over. Thank you.

In September, it was official: My diagnosis is Myeloproliferative Disease, and my subtype is Essential Thrombocytosis, sometimes called Essential Thrombocythemia. You can read more about it here. The quick version is that I’m at a much higher risk for blood clots and strokes. I have a 3% chance of this blowing up into leukemia. 97% that it doesn’t. No cure. No definitive cause for why I got it, why I now have this mutation that I didn’t have before.

So of course it would make sense that the only type of work that I could find right now in this economy is…working as a server for a catering company. Finding a job in this economy is hard enough, and then I have holes from my time in Mexico, that most potential employers don’t see it as “International Experience,” no matter how hard I sell it. So I’m serving platters full of food at weddings, trays full of drinks. I’m getting in and out of trucks while moving racks heavy with glassware and china. Minimum wage, and yet I’m grateful for the part-time work.

I tell myself that all of this moving, carrying, pushing, and hustling is good for me. But I definitely don’t want to drop from a stroke at a young couple’s wedding.

I mean, a bridezilla type might try to kill me if the stroke didn’t take me under all on its own.

On the whole, between jokes, I veer. I veer between staying strong, and then thinking, “What’s the fucking point?”  I’m able to be present to the generosity and love that I have in my life, the care of good friends. And then I think that they are wasting their time, that I’m a lost cause. “There she goes again, with more drama.”

I’ve been in shock since this whole process start in July. Not really wanting to accept that I have a diagnosis, capital D and all that. I started to take it in more this week, when I wrote my statement for R’s permanent residency application.

And so I fold into myself, like an origami ornament gone wrong. Gone renegade, like my platelets.

Gone silent, because if I talk too much, I’ll crack open and howl for days upon end.

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9 thoughts on “The Diagnosis Within the Diagnosis

  1. I hope things get easier for you soon Giselle. Having a diagnosis is hard enough but being apart from your loved one makes it so much harder. Take care and let us know if there is anything we can do besides keep you in our thoughts and prayers.

  2. My dear, I'm sorry that you've got one more thing on your very, very full plate. Whatever you need, please don't hesitate to ask. Sending you a lot of love…(It's Corin… I don't know why I can't comment as me…)

  3. Hey G, sending good thoughts your way. This is a very serious diagnosis and I'm sorry this is happening to you (like you really need anything else to worry about, right?)It looks like the odds are in your favor and while there is no cure hopefully you can get on some kind of treatment to address the risk of clots. Sorry if this is too positive for the moment, sometimes you just need to be sad or upset and that's perfectly fine 🙂 If you need to talk about ANYTHING please feel free to message me on Facebook. I have become quite good at managing chronic disease on a low income!

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