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

Weepily we roll along

Ach, how embarrassing. We didn't row outside tonight because the gasoline that fuels the coach's boats floated away in the rain and wind over the weekend. I had not been on an erg (rowing machine) since April, I think. I am getting over a cold, reacting to the high mold count in the world nearby, have been anemic for at least a year--pile on, pile on, the excuses, Sando. I'm being tested for a second blood cancer. What else? I am a wimp. In the past I thought that when I was itching a lot from exercising, and I felt weepy, that that was a signal to stop. But I don't know now. It was so very very hard to row hard and quick. Coach B came by a few times to see how I was doing--if I was overheating, getting itchy. I got up at one point and bit a hydroxyzine tablet in half, and swallowed the half. It was just so hard hard to pull and push with my legs, knowing always that I am the slowest person, the weakest person, in the whole group. I swear, once this large, out-of-shape-looking woman came to see what our team was, and she got on the ergs and rowed much faster and harder than I. Tonight it was so tiring so very tiring, it shouldn't be that tiring, should it? And yet how could I complain, when Coach J just did the marathon? Wasn't that hard? The thing is they do these hard things and I don't like to do them. Coach S used to push me push me to keep going and then I would have asthma for three days. But I survived. The whole problem with doing your all is that next time you'll have to do your all again and then some. Better numbers.  At least when we're keeping score. Coach B said to stop if I needed to and I wanted to tell her about the anemia and bone-marrow biopsy but I didn't because what would that fix? They are excuses, perhaps reasons. But I know tonight I wasn't crying because I was overheated or itching. I was crying because it was so difficult, so unpleasant, and so tiring, and I felt so sorry for myself. When I finished Coach J said something encouraging. I feel I am the team's goat. Just the goat. I am the goat.



The boat goat.

S hadn't been able to row for a year and when she came back the other week, she said after practice: You must be getting better because the coaches didn't tell you to slow down your stroke. Personally, I think this is a left-handed compliment. But I am not the worst rower on the team. But close. I have rowed with the novices a couple of times, because I missed a rowing practice with my peers, the masters. We are the masters because of time. I think after a season on the water, one is a master, automatically. So Woody Allen's quip about most of all you need to show up, that's accurate here. You are rewarded for your longevity. For making it through a season. When I was rowing with the novices, I was amazed that so many of them were proficient--much more proficient than I was my first five years. And as proficient as I am now. How could that be? Perhaps they are coordinated. That is a possibility. The mystery, and I can't figure it out, is why I continued to come to practice for eight years, when it wasn't fun for most of that time. At Passover last year S and J asked me about rowing and I told them that I didn't do it to be with the other members of ROW (I like them but have a tendency to feel alienated in general, and I don't do much outside of practice with the team, like go to regattas and such), that I didn't particularly like rowing, and they laughed and asked me why I did it. Like that Jewish joke with this punchline:  It's only a hobby. 
Posture is important while rowing.

Giving Thanks

The mesothelioma folks asked me what I'm grateful for. I told 'em:
I am most grateful for my Blue Cross Blue Shield health insurance. I get it from my husband, who worked for a union as staff.
We went out for nine years before we got married, and I was diagnosed with breast cancer three years later, and with blood cancer (polycythemia vera) not much after. I had a mastectomy and chemo at a place in Chicago I call Fancy Hospital. My hematologist is also there, and I’m on a new pill for my polycythemia, called Jakafi. Retail value is more than $10,000 a month – I pay $20.


Hi, blog readers. I've moved on to other things, but sometimes ya just gotta write about being one-breasted. 

Did you click on "write about"? That's what you're supposed to do. Or you can click underneath my photo.
Underneath, or au dessous, as we say in the French, since this shows me sans sein au bord du Seine.

Love,
Cancer Bitch

francais

So proud of myself--I had a phone conversation in French today, with someone at l'Alliance Francais, about taking the de Gaulle course instead of the literature class. I'm more interested in de Gaulle, though that's C-level, and I'm B-level, as is the lit class.
I listen fairly often to La marche de l'histoire podcasts on my phone. I understand between 40 and 70 percent, depending on the subject and how fast the guests speak. I was thinking last month or so that La march is just too hard for me, and I was listening to a show about Sainte Catherine de Sienne, and she didn't eat, and I was thinking to myself, Sounds like Simone Weil, and two seconds later, the host said, Like Simone Weil.

So.
I guess I can follow, at least some.

The Untimely Death of Stonewall Jackson

The Woman Who Could Not Take It Any More felt very very very very sorry for herself. The Woman Who Could Not Take It knows she is her own enemy, but not her own worst. That distinction set aside for old bosses. It wasn't that she didn't blame herself too. She imagines conversations with said bosses, none of which would end well, with power on her side. But that is not what this is about. This is about the $12,000 retail monthly medicine. And the dead friend who floats into her mind and stays and then leaves. There were no regrets when she died. But now. 
The Woman Who Could Not Take It Any More did not make sure that her hematologist approved the costly drug for six more months. The Woman Who Could Not Take It Any More also did not order her monthly Jakafi a week or so in advance. Because she did not do these things she spends four hours on phones and in the Walgreens at Fancy Hospital. The Woman has a few admirable traits. She can make the pharmacy rep laugh over the phone. We were not expected to have such interesting lives, her sister's junior high school friend writes to her on Facebook, probably 45 years after they have seen one another. There is sorrow throughout the land. The poor groundhog, dead in New Jersey Feb. 1. Why was he named Stonewall Jackson? The Woman Who Could Not Take It Any More saves her cousin from committing libel on Facebook. The Woman Who Cannot Take It Any More hangs up accidentally on the pharmacy-insurance gatekeeper. She wants to play the cancer card though she suspects that most people who call the Specialty Pharmacy are in the same boat, that boat being smack in the middle of Shit Creek, the long crab claws reaching in from the water, over the gunwales, even. She hates the quaver in her voice. Knows that she is privileged. Cannot control the quaver in her voice, in spite. It is the 21st century. She is alive in the 21st century. 
She is alive in it. 
She is a slave to her emotions in it. Despite: Buspar (generic), Effexor (generic) and Remeron (generic). She is one of those people who digs deep into her backpack in public. Sometimes she calls it a knapsack, knowing that she is speaking from the wrong place and time. Rucksack. She has rescue medicine for her skin, her lungs, her brain--or wherever the emotions are seated. Some said it was the uterus, of which she is still a proud owner.  
How can she feel so young so alone when she has grown old?
The people who are worse off are already dead.