Waiting, Testing & Waiting: a new law firm

Death of Marat by Munch
Waiting. So much of life is waiting. Unless you refuse to think or acknowledge that you are waiting, and instead you do something else to fill the time, to distract yourself, or something important in its own right. We are all waiting, right? Death's door and all that. I dreamed I was staying over at C's house and I had brought my own duvet and it was sprouting little plants. I didn't think it was a big deal, but she did. I mean, they weren't that tall. I also splashed too much water around in her bathroom.

But the waiting. Waiting for the doctor, waiting for the test, for the results. At the Famous Clinic Thursday the hematologist flung the results of years ago at me:  How do I know I have polycythemia vera? From a routine CBC test in about 2006. High red blood cell counts. Was I still getting my periods then?  he asked. Yes, I said, and I know that's relevant, it can play with the blood-count results. It's why I was diagnosed first with essential thrombocythemia, and then menopause ushered in polycythemia, or rather, unveiled pv. The hematologist went to school in Ethiopia and had an Italian last name. It dawned on me--the Italian invasion of Ethiopia, in 1935. Mussolini reaching out to kill and control more.

So I am waiting for the results of the bone-marrow biopsy. Supposed to be on my online chart today or tomorrow.

In Chicago my hematologist is at Fancy Hospital. She is Serbian-American, and she was young and single at our first appointment. Now she has two little daughters, one of whom said to her, You've ruined my life. I was chagrined because I had been so precocious to have said that to someone when I was seven, and her daughter is four or five. In 2006 or so the single hematologist had asked  if I felt itchy after a shower, and the light had dawned: I had wondered if I was allergic to my soap or shampoo, and then when I didn't use any, just to test, I still had been itchy. Confounding until then.
Warmth. Heat. That breeds the itchiness.

In ancient Roman religion and mythology, Janus is the god of beginnings and transitions, thence also of gates, doors, doorways, endings and time. He is usually a two-faced god since he looks to the future and the past. The Romans dedicated the month of January to Janus.But last week the Ethiopian-American specialist at Famous Clinic had taken my account of her question as a sign that she had planted the idea of itchiness in my head. I tried to describe to him all the years of terrible itchiness and pin-prick feeling, but both L and I could tell he wasn't taking the itching seriously. In the car on the way home through pouring rain L said that the itching had been the center of my emotional life, that I was always upset about the itching, or fearfully anticipating it, all before I got on Jakafi.

I remember walking in and out of restaurants because the air was too warm and I was starting to itch.

The drug Jakafi, said the male hematologist, is a bad drug.
I didn't have a copy of my JAK2 mutation test, which points to polycythemia vera, so he repeated it. Then he called for a bone-marrow biopsy, which I had Friday and then we left Famous Clinic and drove home in the pouring rain.

JAK2, said my Colombian-born dermatologist at Fancy Hospital, is named for the god Janus, who looks both to the future and past. I haven't looked into this in detail, to see if that relates to the shape or formation of the mutation. Does it look like two profiles, back to back?

At the Intellectual University Hospital many years ago the hematologist had been the same as Famous Clinic's, challenging the diagnosis, also. I had chalked up to his university affiliation, the place of deep thinkers and Nobel economists. I wouldn't have been surprised if he had asked, How do you know that we are here? How can you be sure that we're alive, that blood is red?

(My friend P, who has the same rare disease, that is, if I do indeed have polycythemia, was told at Intellectual U Hospital that it might not be pv. Then she went to Famous Clinic, where the hematologist strode in, took a look at her and told her unequivocably that she had it.)

I think my Famous Clinician was being dramatic. I am so attached to my diagnosis of polycythemia vera because, simply, it fits. It fits the symptoms. What else could fit?

The Famous Clinic's CBC showed that I have a high erythropoetin level, and pv is characterized by a low level. It could mean a secondary polycythemia. Or a tumor. Or that my asthma was somehow affecting the level. The Clinic says: Polycythemia vera is unlikely when erythropoietin (EPO) levels are elevated and polycythemia vera is likely when EPO levels are suppressed....EPO levels are also increased in patients with anemia of bone marrow failure, iron deficiency, or thalassemia.

I've been anemic for more than a year, despite taking iron tablets.  My hometown hematologist opined that anemia was the reason my lips turned blue and I was short of breath last year at the end of a fast rowing practice.

 Anemia can be a side effect of Jakafi. 

So the abnormalities can be from the medicine. But I admit there is a drama-attraction gene in me: How exciting that my disease is getting worse, my disease that is already a cancer. I think this is why some teens kill themselves. The drama attracts. They want to be in the whirlwind. Of course this is irrational, this is the id talking. The rational part of the brain is remonstrating: If you kill yourself, it's dramatic in the planning of it, it's dramatic in the doing of it, which lasts only minutes, but the rest of your life, you're dead. And: If your disease is worse, everything will be worse. You will feel worse, your time will be filled with treatments, you will be closer to death. Which is dramatic only in the end and mostly just to the observers. You won't be alive enough to appreciate the chiaroscuro of it.

(painting: Death of Marat, Jacques-Louis David; Marat was stabbed in his bathtub by Charlotte Corday. Marat had a terrible skin disease, perhaps eczema, and soaked to get comfort. His was a dramatic death.)

Example of chiaroscuro:
The Deposition of Christ, Caravaggio


Cancer Bitch said...

It's Oct. 23 and still waiting. After several communications with Famous Clinic, I emailed the hematologist who said he was waiting for the ngs (Next-Generation Sequencing) and would call me Nov. 1 at the earliest. I talked to someone in his department earlier today who said that part of the results would be up on the patient portal Wednesday. I asked her to send me the report even though it might not get here by Wednesday. So of course I am reading about all the things I could have, when probably it's just polycythemia vera, as I'd been told.


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