The Suspense Builds...

This is the fax I sent to the Fancy Dermatology Dept. today. I succeeded in getting an appt. Sept. 1 with another derma on the staff. But that's a long way away, counting in itch-minutes. This afternoon my hematologist said she'd call the dermatologist and see if she could get help for me. There is nothing stronger than Atarax, she said, except Interferon injections, which I don't want to start. She also told me I could take two Ataraxi at a time, assuming these are 10 mg. tablets. I looked and I have 25 mg. tablets.

Oh well.





To: Dr. B, Nurse R



page __1_______ of _____2_____, including cover page





Hello—I’ve left messages yesterday and today because I’m been suffering from severe itching and I believe that you can help me. It is frustrating not to be able to make an appointment or to talk to the doctor.



I have severe itching caused by my polycythemia vera. It had been under control w/ 24-hour antihistamine and hydroxyzine, and two sessions of phototherapy a week, up to 6 minutes at a time. Before, it was 3X week. The last dermatologist I met w/ was Dr. A, because it was too difficult to get an appt with Dr. B.



I had a fellowship in Western Mass from mid-June to mid-July, and found a dermatology office there where I had phototherapy 2X week, building up from 3 minutes to 5.



Mid-July traveled to New Hampshire and Maine, where it was hot and humid. Two horse flies bit me, which triggered severe itching all over. Despite antihistamines, the itching continued, probably exacerbated by severe heat, humidity, and high mold counts. (I'm very allergic to mold, but never had a skin reaction from it before.) I returned to W. Mass. for more light therapy, which helped some.



When I returned to Chicago in late July I was somewhat better, and then worse.I had to begin my phototherapy at square one, starting with 37 seconds/session, twice a week. This Saturday I had terrible itching after riding my bike about 30 minutes, and hydroxyzine helped for only a little while (on top of 24-hour Allegra). Sunday I stayed inside all day and as soon as I walked outside, I would feel itchy. I've called Dr. Brieva a few times yesterday and today, leaving detailed messages that were not relayed in their entirety. I unfortunately missed a return call from Dr. B's nurse, R. The problems:





1. Phototherapy protocol is that after a gap in treatment at Northwestern, the patient starts from square one--getting phototherapy for only 37 seconds at a time. The five-minute sessions in Mass. are not taken into account because every machine is different and they can't be compared. Are there any exceptions to this? Can I get a higher amount of light because I’m suffering?

2.I can’t get an appointment w/ Dr. B until Sept. 24. Because it is hard to get an appt with B, I saw an associate of his, A, last time. She's gone now, on a fellowship, and I suppose she has no prescribing power at Northwestern at this time. Or does she? Or is there another doctor I can meet with immediately?

3.I left two messages for B yesterday (Monday). I asked for an appointment, to talk to him, for a prescription for 3X week, and whether there was anything stronger than Atarax. The nurse called back today, for a few moments when I was away from the phone, telling me he would have to see me before changing the phototherapy frequency. I would be happy to see him but he can't see me until Sept. 24.



I would like, at least, to talk to Dr. B on the phone about having longer phototherapy sessions and more often. I’d also like to know if there is an Rx that is stronger than Atarax.



If this is not possible, I’d like a recommendation for a dermatologist in the Northwestern system who is easier to get in touch with.



Thanks,

READ MORE - The Suspense Builds...

Will it never stop? the annals of bureaucracy

When we were in southern Maine in July we walked along the beach, got our legs wet, rinsed off, then started back up the road to our motel. This was during a nation-wide heat wave, and thus the cool temperatures that we had been seeking on the coast had eluded us. They were not within reach. The cool temperatures taunted us. From a large distance. So large that we did not know where these increasingly mythical cool breezes were. In Canada, maybe? Iceland? Greenland? Maybe. Or some place on the other side of the equator where it was already (or still) winter. But not in Ogunquit, where we had stationed ourselves, about a mile from the beach.



On the way back from said beach, two examples of what they call the official state l bird of Maine--the horsefly--bit my legs, one fly per leg, one bite per fly.

Both legs started itching and I started rubbing them against one another while I was walking so that I could scratch while going forward. And so for a few days I was itching all over.



This is not an unknown state for Cancer B(itch), whose polycythemia vera and accompanying itch have been documented on these cyber-visible-non-dimensional non-pages. The aforementioned blood cancer causes the itch. It was first manifested as itchiness after showering. One woman, Cancer B(itch)'s temporary dermatologist in Massachusetts, told her this summer, had apres-bain itching before she could be diagnosed with polycythemia. Which gives one pause. To have a symptom of a disease before your body registers that you have the disease. If that wouldn't make a person crazy, I don't know what would.



A Personal History of the Itch until Now:

The itch is as mean as a horse fly. It causes all-over itching, even after benadryl, 24-hour antihistamine, gabapentin and aspirin. In the emergency room, she discovers Atarax, and swoons.

The Friendly Hematologist said we will have to try Interferon if we can't control the itch.

But then she tells Cancer B(itch) of a dermatologist at Fancy Faculty Foundation who specializes in skin conditions caused by non-skin-related conditions.

The Quick-speaking, Quick-moving Dermatologist prescribes phototherapy three times a week, which means that three times a week Cancer B(itch) stands naked in a tank that emits purple light, UVB rays, that are successful in calming the itch. She still must keep taking antihistamines.

After a year, another dermatologist in the practice prescribes the phototherapy just twice a week, because it is doing its job. Cancer B(itch) has built up her tolerance and practice so that she stands for six minutes each time in the tank.

Cancer Bitch goes to western Mass. on a fellowship, and locates a dermatologist who provides phototherapy in a little folding tank upstairs from his little cottage of an office. He believes in patient-directed care, and so Cancer B(itch) continues her phototherapy for five to six minutes at a pop (Fancy Foundation has failed to send her medical records, but the dermatologist trusts her), twice a week. Her itch is under control, with the light and the antihistamines.

After the fellowship, she and L become cool-seeking devices on their way to New Hampshire and Maine beaches.

Enter the horse fly.



Cancer B(itch)'s itching is uncontrollable, except when she's inside in the air conditioning. L originates a plan to return to western Mass. for phototherapy. They cross three state lines in one day.

She is light-therapied.

She is less itchy.

The dermatologist opines that there are new allergens in New England that are causing the strong reaction.

It is better back in Chicago. For a bit.



This Saturday she and L ride their bikes about three miles to a union picnic. Her legs are itching, though she's taken a 24-hour antihistamine. At the picnic, it's worse. There is no air conditioning available. She takes a generic Atarax and after about an hour, the itching stops. But gets worse later that day, despite Atarax, and throughout the weekend when she goes outside.

There are theories:

1. It's the heat.

2. It's the humidity.

3. It's both. Cancer B(itch)'s theory is that it is heat, as well as the humidity, which is a sign of, well, general wetness, which indicates lots of mold spores floating around, mold to which she is allergic. The allergy usually causes a reaction in her lungs but for some reason the reaction is going straight to her legs (unlike food, which goes straight to the hips--you knew that was coming) because her skin is now the weakest point. It is compromised.

She is afraid to leave the house. This is not agoraphobia. This is φαγούρα-phobia. She and L start to walk to the card store about five blocks away and they have to go back and get in the car. It is that bad.

And what makes this all worse is that at Fancy, the nurses have made her start her treatments from scratch, beginning at 37 seconds in the tank, instead of six minutes, because that's the policy, which is based on the theory that all light tanks are different, so you never know the strength of the one you used elsewhere. You'd think by now there would be ways to measure that.

And--she can't up her frequency in the tanks to three times a week, because the dermatologist prescribed twice a week. And they can't call that dermatologist because she's on leave. The end. You'll be back up to six minutes soon, the nurse says, though that isn't true.

The Original Dermatologist is very busy (though he is quick) and Cancer B(itch) gets an appointment with him in late September.



Finally today she takes bureaucracy into her hands and calls the Quick Dermatologist's office at Fancy, and talks to an overworked, indifferent worker who puts her on hold about seven times in the middle of conversation. Success is achieved in the form of getting the worker to agree to take a message for the Quick Dermatologist. This is so very different from the way things worked with the Massachusetts Dermatologist, who was casual about appointments and writes a health blog and majored in Comp Lit in college.



I know this account is tedious, so tedious that maybe no one will ever get to this line that acknowledges the tedium. My friend S is recovering from a hysterectomy and waiting to hear whether the nodes that were removed are cancerous. I apologize for telling her about my itch. She says no no it's fine it makes her feel more balanced in the world to hear other people's problems, makes her feel less that she's only thinking of her own ills. As Steve Goodman sang,



And it ain't too hard it to get along with somebody else's troubles,

They don't make you lose any sleep at night.

As long as fate is out there burstin' somebody else's bubbles

Everything is gonna be alright.

And everything is gonna alright.





Steve Goodman photo--he died of leukemia







Photo of black horse fly from here.

READ MORE - Will it never stop? the annals of bureaucracy

Elevator

Today I was waiting for the elevator to take me up to the 21st floor at Fancy Hospital. That's the you're-in-big-trouble floor, where people in wheelchairs and wigs wait for their oncologists and hematologists. I had my tri-annual appointment with my hematologist to check on my polycythemia vera. I noted L waiting too. Her hair was about an inch long, if that. She said hi then asked me for my first name. Then asked me for my last name. Then said she had chemo brain and didn't remember how we knew each other. I told her I had chemo brain too and I explained. She'd just had a cataract removed yesterday and was going to another floor to check in with her eye doctor. Both of her eyes already looked fine. She said she had breast cancer that metastasized to her liver and that she gets chemo for. She said it had been 11 years, which I took to mean since the metastasis. And she's still going. She's a little foggy, yes, but looks pretty good for an 80-something-year-old with metastatic cancer.

On my floor there was an airline hostess going around picking up abandoned newspapers and magazines and asking people if they wanted coffee, tea or water. She had a badge on but I couldn't read it so I don't know if she was a volunteer or if this was her job, to placate people while they waited for doctors who allowed themselves to be overbooked. Everyone was pretty calm, though there were a lot of us there, maybe two dozen or more, sitting around.

My blood counts were pretty stable, so the hematologist wasn't too concerned. At one point she had talked to me about Interferon, which I definitely don't want to take. She reminded me that that was when the itching wasn't under control. But it is and I am so happy that it is. It's always the same old story, isn't it? The rancher who wore boots that hurt his feet and his friend asks him why he wears them then and the answer is that it feels so good when he takes them off. I get upset even talking about how awful the itching/burning was and I am so grateful and relieved that I don't have it anymore because of the phototherapy. Now I'm going to be going only twice a week. When I was a kid I could never imagine myself older than 30 or so, and I certainly didn't ever imagine that some day I would be 55 and standing on a towel to keep my feet from picking up psoriasis skin-crumbs, naked and inside a tank while purple light and heat surrounds me for five minutes and oh yes, I'm wearing an empty pillow case on my head so that the rays won't make my face red and freckly. No, while I was painting freckles on my face with an eyeliner brush I certainly did not imagine that. O brave new world.

READ MORE - Elevator

Light-headed

Tonight at rowing practice (indoors) we were to row hard for one minute, then not as hard for one minute, for a total of 40 minutes. After 20 minutes I got a hot flash and felt enervated, which does happen after I've exercised a while. Then I get my energy back. This time it didn't come back and I felt light-headed and so I stopped, still sitting there on the erg (rowing machine) and moving my feet a little. I was sweating and weeping, weeping because that's what I do when I'm in physical distress. I was shaking and my heart seemed to be beating fast but when I timed it, it was slow. I couldn't get control of my breath. I wondered if I was having a heart attack, but thought probably not. Everyone else kept rowing and I wondered what would have happened if it really were a heart attack or if I had a stroke. Eventually, would they just step over me? The person next to me asked if I was OK and I shook my head. She asked if I wanted to lie down and I said no. Eventually the coaches noticed and got me some food. I had just eaten some bread and cheese at a cocktail party, so I don't think that lack of nourishment was the problem. And I hadn't had any alcohol. I was shaken up and people asked if I was OK and I would continue to shake my head. I was too upset to really talk. J is a nurse and said that the blood hadn't gone to my limbs. Or maybe she said the opposite, I don't know. The numbness in the hands seemed to be part of the whole about-to-faint scenario. S, one of the coaches, gave herself food-poisoning on Saturday and said she almost fainted Saturday night, and felt the same way. I've never fainted, though I wanted to for years and years because my sister R did.

I got a ride home with the lovely and kind S, and I decided to cancel a video taping tonight. It was at DePaul, for an anthology of nature poetry and essays. I don't know who was doing the taping. My essay is about being afraid of open spaces; fear of the nature is my theme and that essay has been my calling card in a couple of anthologies so far. I'm the anti-nature writer. I called G to get a phone number for C, the guy who was organizing the book and the taping. I left him a message and emailed him and then, unusual for me, didn't worry about it any more. It took me at least an hour to start breathing normally. I think my heart is still beating too deeply. If that can be said about a heart-beat.

I always weep when I scare myself with my physical state. Last week I was talking to a nurse at my phototherapy place (where I am zapped in order to alleviate the itching caused by polycythemia vera) who'd been gone on maternity leave. She said that she'd been in labor 29 hours and had to have a C section, but there wasn't enough time to put her under with general anesthesia, so she'd had local only, and could feel the pressure (and pain) of the doctors cutting her open, and could also feel them taking out her uterus and bladder. I almost cried, she said.

Almost??? If that didn't make her cry, what would?

READ MORE - Light-headed

Using the cancer card

I was riding my bike to the Belmont L and had stopped at the light at Belmont and Sheffield. I felt someone bump against my basket. Some guy who was maybe in his 40s with blondish hair and a t-shirt wearing a belligerent attitude. You're in the crosswalk, he said, rather heatedly. I was. I hadn't meant to be. And I hadn't expected people to walk across the street without looking. He was irate. I said, Peace on earth. He was already at the curb. What did you say? What did you say? Peace on earth, I said. Peace on earth? He walked back toward me. I've got plenty of peace. You shouldn't be stopped between these lines. See this line? You're stupid. Stupid! I thought he was going to slug me. I thought I was going to slug him. He went back to the curb. Peace on earth, I said. The light changed.

I was upset. I was mad. I thought later I should have used the cancer card: You rammed into my bike and I have blood cancer! But that seemed a stretch. That night I went to my desk at Smart U, a communal desk that I'd been squatting in for about three years, and the drawers were locked. There was a vase of flowers (kind of droopy but still bright pink) and a welcome note to someone other than Cancer Bitch, who was now occupying this space. Where was all my stuff? My assiduously collected pile of scratch paper, a few books I'd meant to bring home, originals for course packets. Beyond that, I felt displaced. Because--I had been displaced. Without a note or warning.

Later I went upstairs to the office of Smart U's magazine and there was the box of my precious stuff: a cloth bag, the papers, the hot pot I never use. Some ginseng tea. At least They hadn't thrown everything away.

Today I was on my way to Smart U and thinking about what I would say to the Paper-and-Stuff-Removal Guy: I've been around here instead of the other office for the last few months because I'm getting treatment around the corner three times a week for symptoms caused by blood cancer. Of incurable blood cancer! And why didn't you email me about moving me stuff? I have incurable blood cancer! Give me back my drawer!

I was getting so worked up about the incurable part. I had never put it that way before. I do have incurable blood cancer. Polycythemia is chronic. There's no cure. Therefore, not curable. I kept getting sadder and sadder. People have leukemia and they get over it. They're cured. They're in remission. It's gone. PV is never gone. There's the joke (dead serious) about advice to med students: Become an allergist. They never get better and they never die. Except people with PV die, die early, though lately the word is that we could have a near-normal life span. Just gotta watch out for clots. That move up from your legs into your lung or brain and then--

out like a candle.










For info on ordering an actual cancer charge card (pictured at top), click here.

READ MORE - Using the cancer card

Elevated

I was in the elevator at the Fancy Hospital Medical Building after my phototherapy session, which has really helped alleviate the itching/burning of my skin caused by my polycythemia vera. A guy, sort of pale, dark hair I think pulled back, maybe 30s, hunched over a little, black t-shirt, was talking to a woman about how he had to quit skating because of blood clots. He got off at the second floor. He didn't look tough enough and scarred enough for hockey. I asked her if he had polycythemia vera, and she said it sounded like that, but not quite, and I guessed, Essential thrombocythemia? and she said yes, that he'd had his spleen removed a few months ago, and that he had been a professional skateboarder. My hematologist pats down my spleen at every office visit, because it can become enlarged, but it's always OK. I had essential thrombocythemia first, and it does often lead to PV. ET didn't seem like anything. I just had too many platelets, and eventually got some prophylactic phlebotomies for it (or was it for PV only? I don't remember), and my skin itched after taking a shower. It seemed like a sleeper disease, a disease that isn't there. I know a kid (30s) who has it who doesn't want anyone to know and I was was astounded to learn that he wanted to keep it quiet. I know that when I'm on a plane I'm supposed to do isometrics so the blood won't pool into clots, and the hematologist and her assistant have schooled me in the symptoms of a blood clot (a piece of pain starting in the legs; but the sudden appearance of two identical bumps on each ankle, for example, has nothing to do with blood clots; that's something I knew but it panicked me anyway the day that they appeared and I called the physician's assistant who of course said it must be mosquito bites, but they weren't bites, I knew that), but I think I'm self-aggrandizing when I call my disorder cancer, even though it is cancer. To get info on it from the government you go to the National Cancer Institute, but the Mayo brothers think of it more of a disorder than a cancer.

Along the same train of thought though it seems not to be: I had to start up with the periodontists again because I had a tooth implant that failed. It was loose in my mouth. It's a father-son business, and the son had done the work. When I went back I asked to confer with the father to see if he could supply a reason for the implant failure. He looked at my chart and asked me if I still had cancer, and I said, Not breast cancer, but I have blood cancer and take oral chemo. He asked what I had and then told me that it wasn't cancer. I felt devalued, as if he were saying that I was faking it. I was emailing someone who also has it and was telling her that I want it to be considered cancer, and she asked me why it mattered. I don't know exactly. It has something to do with the shiny burden that cancer is. Cancer is deadly, cancer is scary, cancer is what everything can give you, cancer is the end of times, it's dramatic, and if you have cancer then you are special. I have beat/beat/beat/drumroll, c-a-n-c-e-r. Conversation stopping, jaw-dropping, cabosh-putting-on, oh-my-god-how-wonderful-you-are-to-go-on (I can't go on, I must go on, I go on) cancer. The domestic and industrial beast. The dragon. The disease that makes you a martyr.

To continue with the digression on the pere-iodontist, or periodondist pere: He looked at my list of medicines and said, O of course your chemo lowered your resistance and you had bacteria so that's why the implant failed. Couldn't be because of some failure by periodondist fils. I happened to go to the hematologist a few days later, who showed me my white cell and neutrafill counts, which were clearly inside of normal, because it's chemo but not that kind of chemo, so where's the excuse now, pere doctor?

I was thinking of turning this blog into the laments of the continuous patient, but I don't want to be that person, it's just that I'm going to the doctor or medical building all the time, for medical and quasi-medical appointments, that I'm presenting my case to alleged healers and those who administer healing, so it does seem to be a focus but it can't be the main focus, unless it's interesting enough to write another book about. Which it doesn't seem to be.

READ MORE - Elevated

Type 2014A...

in the folktale roster is the "That's good, that's bad" formula story. I found out that it did not originate with my cousin H, who used to tell these stories in the 60s. Or maybe it was just the one classic story about the man and his new wife.

Here goes my attempt, not adhering exactly to the formula:
I had breast cancer.
That's bad.
That's good, I don't have it any more.
That's good.
That's bad. I have another kind of cancer, polycythemia vera.
That's bad.
That's good, it's slow-growing and sort of under control.
That's good.
That's bad, it makes my skin very sensitive, and it itches a lot. But because of my breast cancer, I joined a rowing team for breast cancer survivors and pre-vivors.
That's good.
That's bad, I rubbed my leg against the gunwale and got "slide bite."
That's bad.
That's not bad, I put antibiotic ointment and a bandage on it.
That's good.
That's bad, I ran out of bandages when we were in Oregon.
That's bad.
That's good, L got me some more bandages at Walgreens.
That's good.
That's bad, I reacted to the bandages with huge red welts.
That's bad.
That's good, it didn't kill me.
That's good.
That's bad, we were in a tiny town and couldn't find calamine lotion, cortisone cream or antibiotic ointment.
That's bad.
That's good, we got Campho-Phenique and I read online that toothpaste helps the itching.
That's good.
That's bad, when I got home half the welts were still there, and red and puffy.
That's bad.
That's good, I went to the doctor.
That's good.
That's bad, he said it could be staph or MRSA.
That's bad.
That's good, he prescribed Mupirocin ointment and asked if I wanted an oral antibiotic or if I wanted to wait.
That's good.
That's bad, the bumps are still red.
That's bad.
That's good, they're smaller.
That's good.
That's bad, I'm leaving town and don't know if I should ask for the pills.
That's bad.
That's good. I have the option. I have health insurance. I'm actually healthy, overall. Despite all. Sorry this isn't very funny, though.
That's bad.

[Photos from Mayo Clinic; mine started out like the one on the left, but are not as bad as the one on the right.]

READ MORE - Type 2014A...

Son of Son of Meltdown/I am Zapped

One symptom of my polycythemia vera is itchy skin. All over? two people asked in one day. No, not all over. Not my hands or feet or face or scalp. But just about everywhere else, so much of everywhere else that it seems like everywhere. It stings as well, sometimes as bad as backyard ants that attacked me while I was trying to rescue my sister, who was being dragged by her (unwitting) friends one night through an ant bed. We rushed inside and ran to the bath tub. I ran water all over my legs and R, all over her head, where the ants had nabbed her. This was in Texas, but before the era of Fire Ants, or else we might not be here to recall the event. Today I'm home, trying to take a short nap and my skin is stinging and I already took a 24-hour Zyrtec (which was mislabeled--should be 24-minute) three hours ago. The itch and sting cause panic and weeping and thoughts that it will always be this way, I can't do anything about it, the medicine doesn't work, Atarax was great while it lasted, before it stopped working, I'm helpless; time stops and this becomes my whole life, I can't go anywhere, I can't escape into sleep. I'm living in the moment, can't see beyond it except to an entire life bounded by this, making me unable to leave the house and it's so bad I cancel my therapy appointment later in the afternoon. I try to reorder some gabapentin, but my prescription is outdated, and the gabapentin didn't work anyway, but it was a fleeting reassurance to think about gabapentin, that there might be something out there that I could reach.


That was a couple of weeks ago. I ended up taking more Zyrtec, and I think a benadryl, and I slept three hours. I'd been to a dermatologist who specializes in skin problems caused by non-skin diseases. He was born in Colombia and his father grew up with a kid who always said he wanted to be a writer. Yes. Garcia Marquez. The dermo said that was a 50/50 chance that phototherapy would help, and his people said they'd check with my insurance. Last week I called to see what the insurance decision was and found out it was in my favor! So yesterday I got zapped. I went to a little office without windows with two nice ladies in it in solid-color uniforms. There were three or four big upright tanks (reminding me of the big round French outdoor bathrooms) and I changed into a gown and paper footies and went inside (luckily, the one that was open on the top), wearing stiff dark goggles over my eyes, attached by an elastic strap, my eyes closed. The lady in green set the machine for 38 seconds and I could hear whooshing around me and could see, through my closed lids and the goggles, purple light, and it seemed to last about two minutes. Then the sound and light stopped and I put on my gown and footies and pushed on the metal bar to open the door. I felt like I'd been in Mr. Peabody's WABAC Machine and that I should be stepping out into the 18th century or any other era. But I was back in the Office of the Two Ladies with dream catchers and psoriasis bulletins on the wall.

L saw me a few hours later and asked if I was still itching.

I was zapped on Monday and now it's Thursday. I'm taking one-a-day Zyrtec just once a day. But I've also been inside a lot; being outside can make my skin itch because there are so many allergens out there.

[Dog scratching pic: http://www.fotosearch.com/photos-images/itching.html]

READ MORE - Son of Son of Meltdown/I am Zapped

How do you solve a problem like tamoxifen?

I take it and don't think about the side effects very often because I can't bear to. The oncologist said to take it so I take it. I know there's a chance of developing endometrial cancer, so I get checked out by the Smooth Gynecologist Who's Younger Than I Am But Acts Like She's Older. What tamoxifen does seems so direct: It cuts off the absorption of estrogen, which is what my tumor grew on. In August the New York Times told us that tamoxifen can cause the formation of a non-estrogen-sensitive and hard-to-treat tumor. And Tuesday's NYT tells of omission bias, a term for the phenomenon whereby a person worries more about a low risk of harm from something they do than about a higher risk of harm from doing nothing. In the story, the worry was about tamoxifen. The Times reported that women are afraid to take the drug. Out of 632 women in a study, 80 percent said they were worried about side effects, and most of the women said they wouldn't take tamoxifen.
At rowing practice (indoors) Monday night someone was complaining about tamoxifen's side effects, including weight gain. I feel like a fool to take it. But the good it can do is significant. Though now I read now that there's a chance of cataracts and blood clots. My polycythemia vera puts me at risk for clots, and I take hydroxyurea for the p. vera, even though the drug could cause leukemia, because the condition itself could cause leukemia, and my inhaled steroid for asthma could combine with my other drugs to make me even more liable to develop blood clots. But the hydroxyurea lowers my red blood cell count, which makes me less likely to have a clot. Red blood cells are those round red spheres in the image above.

It is a difficult, difficult thing to be alive.

The papers pile up and the news gets worse and there's another surge, the world is dangerous and the wind chill here at the moment is four below. The house is creaking from the cold. I'm wearing a flannel nightgown from Austria and L is asleep between flannel sheets with sketches of snowmen on them.

On the one hand, on the other hand, on the other other hand.

[shrug image from dreamstime.com]

READ MORE - How do you solve a problem like tamoxifen?

Mauled by a Student Nurse

Alert readers will recall that Cancer Bitch has a rare blood disease that borders on cancer. It becomes cancer when plaintiffs' lawyers go after the people who allegedly caused it in their clients. Otherwise it's pre-cancerous. It appears mostly in men over 60, so she doesn't know what she did to get it, besides having a certain JAK2 gene mutation. The condition is called polycythemia vera and those that have it have too many platelets and red blood cells. One of the symptoms of the disease is itchy skin, especially after a hot shower.

Cancer Bitch has not taken a hot shower in years because of this. She has taken very quick warm showers and jump-in-jump-out baths because she wants to avoid hot water. In the past few weeks, she's been itchy all the time, and it ranges from regular old dry itchy skin to just-like-the-time-she-kneeled-on-the-ant-hill: itchy and painful pins and needles. It seemed for a while that benedryl could tackle the itch, but then it seemed it could not. Friday she itched and scratched during dinner. Saturday she was itchy and uncomfortable and on the way home from grading papers, she whimpered and cried in the privacy of her car. She couldn't tell if she was weeping because her skin hurt so much and she felt feverish, or because she felt, It will always be thus, why do I deserve this? She never asked, Y Me? about the cancer, but she was asking it about PV. She could understand how Spalding Gray killed himself because he couldn't relieve physical pain. She didn't know, either if she was scared and panicky because she'd run out of Effexor for a day and half, and didn't know what is fear caused by pain and what is fear caused by fear of pain.

She stopped at the drug store to pick up the Effexor and she asked the pharmacist if there was anything stronger than OTC cortisone cream. The pharmacist said her doctor could prescribe cortisone. And Cancer Bitch thought how terrible and impossible it would be to take cortisone for the rest of her life; it would dissolve her bones and maybe make her crazy, out of one's tree, as Stanley Elkin once put it.
She became Scarlett O'Hara asking, What is to become of us?, us being herself and her rare blood condition.

It was early evening and she was still weepy when she arrived home and her husband L said Why not call your hematologist? She was too choked up to do it so he called and left a message with a real live person to leave a message with the hematologist on call. Soon a hematology Fellow called the Cancer Bitch residence and said, Your itchiness may be due to a higher platelet count, so before I prescribe something you should go to the ER and get your blood count. So that is why Cancer Bitch and consort spent four-and-a-half hours in the Fancy ER. During which time a student nurse chased after a vein in the crook in Cancer Bitch's elbow, digging into it, really, and that is why Cancer Bitch yelled out, Shit, shit! when she has never before cursed or yelled out anything during any procedure ever before involving a needle in pursuit of a vein. L said that she would have a bruise the next day, and it was so: it's fuchsia and about three inches across and one inch high.

The blood was drawn and then it was examined and then it was told to Cancer Bitch that her platelet count was high, and then the ER doctor prescribed a lovely drug called Atarax, which STOPS THE ITCHING.

The question is, Why didn't Cancer Bitch's hematologist recommend this before? She will find out Wednesday, at her next appointment.

Meanwhile, Tuesday she is getting her womb opened up slightly so the gyne can examine her cervical cells to see if the abnormal cells she gathered for a biopsy are widespread and to see if there's a polyp still hiding in there. When the doctor described the procedure to her Monday, Cancer Bitch said, Is it a D & C? and the doctor said Yes, it's a D & C. D & C always sounded so mysterious, as if it were a cover-up for an abortion. It does take place sometimes after an abortion. But not in this case. In this case the doctor is probing for secrets of the womb, wanting to know if any cells have started down the road to becoming cancerous. Cervical cancer, we read, is slow-growing and it's one of the easiest cancers to treat. Taking tamoxifen can lead to cervical cancer, which is why the Cancer Bitch and her doctor are so wary.

Then Wednesday is the appointment with the hematologist who wants to put her on a pill that could eventually lead to leukemia, just like the condition itself, polycythemia vera, might.

Might might might. May. Quien sabe?

READ MORE - Mauled by a Student Nurse

More from the Annals of Polycythemia Vera

L's office brings in people to test our blood every year in a "wellness screening." I have polycythemia vera, that in layman's terms means I have too many platelets. (I want to link to earlier posts about PV but the linker isn't working. See 2/20/08, 3/9/08, 6/2/08, 2/1/09.) I sent my results to my hematologist yesterday and today she said that since my platelet counts are still high, despite my therapeutic phlebotomies (I go to the blood bank and they remove a pint and throw it away) that she wants to talk about prescribing hydroxyurea to lower the count. Wikipedia tells us that it's "used in hematological malignancies, specifically polycythemia vera and essential thrombocytosis." Whether my PV is cancer or not depends on whom you talk to. The delightful thing about hydroxyurea is that it prevents leukemia and also can cause it. It gets you coming and going. Side effects include "drowsiness, nausea, vomiting and diarrhea, constipation, mucositis, anorexia, stomatitis, bone marrow toxicity (which may take 7-21 days to recover after the drug has been discontinued), alopecia (hair loss), skin changes, abnormal liver enzymes, creatinine and blood urea nitrogen." For the moment I'm not upset, just scared about adding this new drug to my large bouquet of strong medicines. Will I have to take more drugs to combat the side effects of hydroxyurea?

The FDA tells us that the drug is good for ovarian cancer. I wonder if you can use it pre-emptively. Would that be the silver lining in this cloud? Likewise, what if people took chemo and they didn't have cancer? I suppose the chemo would kill off any cancer cells swimming below the radar. But it wouldn't keep you from getting cancer later.

Mayo tells us we should wear disposable gloves when handling the tablet or capsule. After all, this is a substance that can turn your nails black, cause hallucinations, and as I said, bring on leukemia--even years after you've stopped taking the medicine. It can lower your white blood cell count, so make you more susceptible to infection.

On the other hand, it can cause weight loss.

The thing about polycythemia vera, or at least my version of it, is that the symptoms are ridiculous. I have tiny red dots on my skin and I get very itchy from being in hot water or even from the deep massage I'm getting for my Achilles tendonitis or even just out of the blue. It also gives me red cheeks so I look robust and healthy, like I've spent all day skating around the frozen-over dikes with Hans Brinker.

I felt fine before I was diagnosed with cancer two years ago, and I feel fine now and I keep thinking of Ann Patchett's book, Truth & Beauty, where she quotes Lucy Greely saying that her cancer made her feel special. It's ridiculous now to feel special when one out of every eight or nine US women has a breast malignancy. But there's this Thanatos-loving part of me, or melodrama-loving part, that feels sort of hopeful about the possible endometrial cancer. And I don't mean hopeful as in, It's probably nothing. It's like this dark hopefulness, like an attraction to the edge of a chasm. As in, O, I'm even more special because I might have a different kind of cancer.

What kind of person thinks this? Do I feel another cancer is inevitable, so that it's a relief when I think of finally being hit by a second one? Then I don't have to worry about the second hit. If you're dying, you don't have to worry about dying, because you're already doing it. When I was younger I felt so guilty for being alive because I knew that if I didn't have asthma medicine I would be a goner. And I knew I was privileged to have the asthma medicine, and later a breathing machine, because there were people everywhere who weren't getting care. And maybe they were dying and maybe not, and it seemed like my real fate was to die. To be dead. (This is why I've been in therapy since the Nixon administration.) It helped that my parents paid for a machine like mine that they donated to the hospital. I went to summer camp for three years and hated it because I couldn't breathe but I didn't tell my parents, I think because I didn't want to disappoint them. There was something deeply wrong with me, I couldn't exist with and in Nature, even though it should have been... so natural. Nature could kill me, and now my own nature, my blood, has turned against me. Has thickened against itself.

We are finite beings. Is that so hard to fathom? Yes. Because we have been here our whole lives. The world could not have existed before we were born.

READ MORE - More from the Annals of Polycythemia Vera

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I was talking on the phone to R today, and she told me about her hometown best friend who has a terrible blood disease. What is it? I asked. I was pretty sure what she would answer. I was right: Polycythemia vera. Oh, I have that, I said. Mine is almost asymptomatic, except that I get pins and needles from taking a shower or bath with water that hotter than warm, and I often have red cheeks. Oh, and I have to get my blood sucked out and disposed of every couple of months. The technical term is therapeutic phlebotomy. Her friend has it bad. Her friend's mother has it worse. She's had small strokes. Her friend had been feeling tired for the past two years and so now when she sees her mother's symptoms she imagines she's seeing her future. PCV isn't usually hereditary but in her case it is.

I felt very lucky and charmed even though I had terrible pins and needles for about 90 minutes after physical therapy one day for my Achilles tendonitis, caused by the rousing of my circulation.

The thing is we are all getting older and we are getting more and more diseases and injuries and conditions. R has had many, many health problems and said she's disconcerted by having so many of her friends cross the line to the illness side.

I found out last week that my friend P had had a month of bad reactions to a dental operation. I don't mind hearing about everyone's bodily status. At least not yet. I don't believe there's such a thing as TMI (too much information).

In grad school my friend D found a letter on the street written by one nun to another. The letter-writer detailed her bowel movements. At least in my circle, we haven't descended to such detail.

But I have to admit that PCV (I think that's the abbreviation used) does worry me. I fell on ice last week and got a huge bruise across my arm and it was warm to the touch. After panicking, which started after midnight, that it was going to turn into a blood clot, and talking to two emergency room nurses and then in the morning, to my hematologist's assistant, I calmed down.

For those of you who get midnight health panics, I recommend calling the Northwestern Memorial Hospital emergency room. The nurse at Illinois Masonic wouldn't give out any information.

Don't tell NMH that Cancer Bitch sent you.

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