Words Like Locusts Flew From Her Fingers

About Me

I grew up in Orono, Minnesota. It was once a semi-rural paradise but, alas, it has become an upscale “bedroom” community with gigantic houses popping up on what once were fields and forests like festering boils on the buttocks of a swimsuit model. Alas indeed. My husband is Mark Hartong: an all-around nice guy and super-genius. We live in Fairfax, Virginia. There are far too many people here and most of them drive cars. It’s not good. My fondest dream is to move to a house in the country surrounded by acres and acres of woods and fields.

I began playing the flute when I was about 10 years old but didn’t get really serious about it until about 2003. At this point, I do a lot of playing as a soloist and in ensembles. Besides playing C flute, piccolo, alto, and bass flute with the Woodbridge Flute Choir, I also perform with the Manassas Symphony. If you’re interested in my flute-y existence, you can visit my other website: Flutes of Fairfax.

In the spring of 2011 I was diagnosed with a rare cancer called Pseudomyxoma Peritonei. Better yet, I have a very rare form of this rare cancer. Happily, though, I don’t at this point have a particularly aggressive form. (I’ll give you some details about my situation below, if you’re interested.)

Right about the same time as I was diagnosed with my disease, my good friend and next-door-neighbor Carol was diagnosed with “triple negative” breast cancer.

Since she and I like to get together for cocktails and since much of our conversation these days is focused on cancer, I came up with the idea of forming a club: the Northern Virginia Cancer and Drinking Society. We have only one by-law so far. This is it:

If you do something obnoxious to another person, an acceptable excuse will be: “Fuck you! I’ve got cancer!” It’s our (probably very misguided) notion that all we have to do is say these words and any accusations of selfish or boorish behavior will immediately be forgotten.

My friend and I are the only members of the club so far.

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Anyway, here’s how I wound up with this Pseudomyxoma Peritonei thing.

My story actually begins in 2006 when I underwent a partial colectomy procedure for removal of a large villous adenoma in my colon. I had a temporary ileostomy, had it reversed six months later, and since all seemed well, went on with my regular life.

In 2009 I began having some occasional pain in my right side (right below the rib cage). I went to my doctor, she ordered a CT scan and a CEA test, all appeared normal, so we just wrote it off as being constipation-related. Around the middle of 2010, though, the pain had become pretty much constant and I’d developed some new symptoms: regular bouts of heartburn, shortness of breath, and noticeable abdominal bloating.

Another visit to the doctor (in spring 2011), another CT scan along with CEA and CA-125 tests and…oh my…how things had changed. My tumor markers were about five times the normal level and the CT scan showed tumors on my ovaries, some sort of smudginess in my right omentum (which, it was speculated, could just be scar tissue from previous surgeries), and some fluid around my liver. Also, a hiatal hernia. Not surprisingly, the first thought was that I might have ovarian cancer.

I had a total abdominal hysterectomy (and a little supplemental work to unkink/uncompress part of my small intestine) on 4/13/11. I also had a couple liters of goo removed from my abdomen. Thankfully, my surgeon recognized what he was seeing — pseudomyxoma peritonei. It was just a matter of what kind.

My tissue samples from the hysterectomy, along with tissue from the colectomy in 2006, were all sent to Johns Hopkins for examination. The diagnosis: PMP from dysplastic adenomatous mucinous neoplasm. (I believe that would be the sort otherwise referred to as DPAM.) Most interesting to the pathologists is that my PMP came not from my appendix or ovaries but as a rare complication from my surgery in 2006. Apparently some of the cells from the villous adenoma escaped into my abdomen and went crazy. The PMP is pretty much all over the place: terminal ileum, small bowel mesentery, greater curvature of the stomach, right hemidiaphragm, omentum (which I think was pretty much removed during my last surgery), and of course it was covering my ovaries and part of my uterus.