No chemo yesterday

My while blood cell counts were too low for me to receive chemotherapy yesterday. I need to stay away from large groups of people to prevent exposure to an infection. My friend D sat and visited for an hour while I waited for the lab results; it always feels better to have company.

After leaving the treatment center, I went straight to Dr G's office to receive my monthly injection of Xgeva, the new bone strengthening drug I've been getting instead of Zometa. I told the nurse about my week of symptoms (stupid, fatigue, runny nose and that on-the-edge-of-feeling vertigo), and Dr G came in to talk with me. Between the stupidity (which sometimes gets call "chemo brain") and the not-quite sense of vertigo, he wanted to rule out the possibility of brain metastases and ordered a brain MRI, which I haven't had in a while.

I did a little research and found that vertigo (also called Benign Paroxysmal Positional Vertigo or BPPV), can be related to treatment with gemcitabine, the chemo I just finished. Read here for more information.

So I get an extra week to recover and feel better, I'll have the brain MRI on Friday, and get the results next Tuesday.

I also learned that the Abraxane/Avastin combo is given in this order:
Abraxane on days 1, 8, 15 (of a 21 day cycle)
Avastin on days 1 and 15 (of a 21 day cycle)

I like having more information!

Next steps

I saw Dr G briefly today while getting my monthly shot of Xgeva, the bone strengthener that replaces Zometa. (The nurse wanted him to oversee her giving the shot, and indeed he caught her recapping the needle, evidently a no-no.)

Dr G wants me to have Gemzar next Monday (dose #5). He also wants me to have another MRI of my liver. My recent tumor markers indicated a slight increase from the previous lab, but tumor markers alone have not been conclusive for me in indicating disease progression. The MRI should indicate if the liver mets are larger or more numerous than the last time, and whether or not the Gemzar is effective. I have asked for no chemo on Monday April 18 because of Passover beginning that night (we will have a houseful of people) and I won't have chemo on April 25, since my appointment with Dr G is later that week. Then we will review the MRI results and make a plan.

Meanwhile I'm waiting for a call to schedule both Monday's chemo and the MRI. I guess I'll need a ride to and from that test, since going headfirst into the MRI tube exacerbates any claustrophobia I might have. I do wear an eye mask to prevent me from seeing just how close the top of the tube is to my face. Fresh air blows at all times, plus they give you a panic button to hold in case it gets too intense. Still, I think I will take some lorazepam just in case and let someone else do the driving, whenever the test will take place.

MRI Results

I got the results of the MRI. I'm clean. It's clean. Or however you say it. People keep asking if I get scanned for cancer lurking in my body. I guess this is the closest I've gotten. Aside from mammograms, but people don't want to hear that mammograms are all that's protecting me from a relapse. Though mammograms are not protection, per se. The Pinks have brain-washed everyone to believe that mammograms can somehow keep cancer at bay. Early detection is good, but it is what it is: a way to show that cancer is there, early on, when it can be treated and there's more of a chance of survival. Prevention is important, even more important, but it's much less concrete than a mammography machine. Where does prevention start? At conception? Gestation? Birth? Puberty? At the first food eaten and drink drunk and air breathed? And every one thereafter? And much as I like to blame everything on our military-industrial complex, I have to admit that breast cancer is an old, old disease, pre-dating by many centuries Blake's dark Satanic Mills.

A new Facebook friend who went to high school with me asked why so many people in our class have or had cancer. I didn't know that our numbers were so high. He's getting back to me. We grew up in a polluted city, Houston, where we had mosquito fogging every summer. So how were we different from anyone else in the population? Does he know something about the school building itself? We shall see.

[a two-breasted MRI image, Boca Radiology Group]

There is no cancer in the family. L had two spots on his face removed last week. He just found out today that they're something that doesn't have a name, and which isn't cancer.

Tales from the MRI

I got an MRI on Wednesday, as a precaution, because I've had calcifications that are "probably benign" on my mammograms for the past year and a half. An MRI can't display more calcifications, but it would show if there is any small cancer. This has to do with trusting your medical advisers. E tells me that hospitals don't like to do MRIs on breasts because there are so many false positives, which require radiologists to perform biopsies, and they don't like doing biopsies because they are labor-intensive and not profitable enough. Can this be true? As the lady in the joke says, An MRI couldn't hoit. My first MRI was a very big deal, partly because it involved waking up at the crack of dawn. This was my third, and in the afternoon, and I went by myself. All three times I've taken a Valium because I'm claustrophobic. So much so that I bolted down the the skinny winding turrets of Gaudi's La Sagrada Familia in Barcelona, as well as a person can bolt when there's a crowd climbing up in front of you and behind you. I probably could have made it to the top of the cathedral if I'd had a Valium with me in Spain.

[La Sagrada Familia]
There was confusion and ignorance at Fancy Hospital, so I ended up wasting 45 minutes waiting for someone to find the order for me to get blood work done beforehand. I take the one medicine that can interfere or interact in a bad way with the MRI dye, and they needed to figure out the level of it in my blood. It turned out that the receptionist had sent me to the wrong place to wait. The surgeon's nurse figured it out for me and then they took my blood and sent me to wait.

A young woman came into the waiting room with a hat on. The kind of hat that could be used to protect against the cold and also to cover a bald head. It was tightly-woven knit or maybe felt, light blue, with a flare around the edges. She was eager to talk. She had had stomach problems and was losing weight but waited four months before going to her doctor, who gave her some pills. They worked for a week and then she couldn't eat, she felt like something was in her throat. She went to the ER and one of the Saint hospitals, where a doctor told her she had stomach cancer that had spread to the rest of her body and that her chances of survival were 50/50. Then the doctor left the room.

The girl told her mother to take her to another hospital, which she did, which is how she ended up at Fancy. There she was told that the cancer had not metastasized, and that she was going to get chemo to shrink the tumor, which was the size of a baseball. And so she cut her beyond-shoulder-length hair, as she and her mother and brother cried, and she got chemo and more chemo. A friend of hers who'd had breast cancer warned her in a voice-of-doom fashion that her hair would fall out in the shower and that she'd lose her eyebrows and eyelashes. Finally she told this friend not to call her any more, because she was so negative.

The girl asked her mother, Why me? I'm not a bad person. I'm not like gangbangers who are shooting each other and don't value their lives.
Her mother said, Only God knows.

Below the hat you could see her dark eyebrows and eyelashes, and under the hat she had very short dark hair. Her tumor has shrunk so much that the doctors are telling her that it's a miracle. I told her about my temporary tattoos on my scalp during chemo, but didn't tell her about the protest in the middle of my head, US Out of Iraq. I was afraid that she might support the war and put an end to the good feeling between us. Was that cowardly? Probably.

I was supposed to get the results of my MRI within 48 hours, but did not and now it is the weekend. Another demerit for Fancy Hospital.

Good MRI results

The results of last week's brain MRI were good -- no evidence of metastases in the brain. But it still doesn't explain the sudden onset of vertigo, which by the way has not happened since last Thursday. Dr G says to wait and see if the vertigo returns and if it does, then we will address it.

In the meantime I am thrilled to have a good baseline brain MRI!

MRI today

I had my brain MRI today. Half of a one mg ativan tablet relaxed me enough to get into the tube. My eye mask helps a lot to keep me from freaking out at being inside the narrow MR tube. But the ear plugs didn't really do anything. The clanging and ringing and random LOUD sounds are so unpleasant. My ears rang for several minutes after I was finished.

I had forgotten to ask if this test was going to be performed with injectable dye, called contrast. But the technician read that I have a port-a-cath and asked if I wanted them to use it. I always say yes to this request, because I hate being stuck with a needle. So off I trooped to the infusion room, where a nurse accessed my port quickly and easily. Then back to the MRI room, had the scan, and back again to the infusion center to be de-accessed from the port. The whole process took about an hour. I get the results on Monday.

The ativan made me drowsy, so after returning to our host family's home and eating some lunch, I took a two hour nap. It was wonderful! I don't think I moved the entire time I was ensconced on the sofa. Hopefully I will still be able to sleep tonight after such a massive nap this afternoon.

The Never-Ending End

I'm through with chemo, through with cancer--but I'll never really be through with cancer. And right now I am still Her Baldness, to borrow a title from another chemo-head.

This morning I was on my way to meet a client at The Little Cafe when a young man on a bicycle asked me for directions. He wanted to know where the Howard Brown center was. I asked if he wanted the clinic or the lesbian-gay center (which doesn't have Howard Brown in the title), and he said the latter. I directed him--two blocks south and two blocks west, shiny new building--and he asked me about the message on my head. You must feel really strongly, he said. I felt unmasked. My head as canvas was a side effect, not a deliberate political act. I told him that I lost my hair from chemo. I started to feel that if I were really committed, I would have shaved my head back when I had hair. But I guess a button will have to do when the hair sprouts back.

I am still on the never-ending quest to get my port removed. It's taken a few phone calls so far, and I still don't have an appointment with Interventional Radiology, the people who insert and install and remove the ports. I had to go today to Fancy Hospital to get blood tests (three tubes) that will qualify me for port removal. One of the regular nurses who took my blood before chemo did the honors. She is especially friendly and also laid-back. She also remembers me, which I think is something, considering all the people coming through. Then, blood drawn, I went down to the fourth floor to get a routine MRI of the remaining breast. The sole breast. The surviving breast. The first two times I got MRIs I brought someone with me. This time it was just me and my generic Valium. I was able to sleep some in the MRI thing, even though it's very clang-y and buzzy. Before I went inside the machine, the tech needed to mark the places on my breast where I had scars, and she used Vitamin E capsules to do it. She just taped the golden ovals onto my breast. She said the Vitamin E shines up brightly in the pictures. I asked her who thought of that. She didn't know. When I told L tonight he said, To help heal the scars? and I said no, though I've read that Vitamin E does help scars fade. I'd forgotten they were there and one had melted by nighttime.

Afterwards, I checked my e-mail down the hall in a machine set up in a waiting area, and then went to WRU to photocopy some handouts for an upcoming class. I saw H there, who mans the desk in the hallway. I told him I was through with chemo. So you're in remission? he asked. I guess, I said. Just like I hadn't thought I was a survivor yet, I didn't think I was in remission yet. But I guess I am. Which scares me because J, the son of B and S, was in remission. And then his cancer came back.

I stopped in at B's tonight. He was in the midst of moving himself from one mechanized wheelchair to another. He fell. It took quite a while to get him from the floor to the sofa. He can move his arms and hands but he doesn't have much strength in them. His legs are dead weights. He told me that Kelly the Irregular had called to say she couldn't come tonight. I said, I'm not going to help you get ready for bed. I keep telling him he has to hire someone better. He says a reliable service is too expensive. I figure if we don't help he'll be forced to hire someone else. L came over later (he was at Soldier Field to hear the Democratic candidates) and we moved B to the chair. I relented and we were going to help B go to bed but he wasn't ready. He wanted to watch Jon Stewart (nee Jonathan Stewart Leibowitz). So we didn't. We shall hope for the best.

He has the kind of MS that just gets worse and worse. There is no remission. His wife S has put him on some supplements, which seems to make him more alert. The doctor says the disease is eating up his spine. He has pain and spasms and his legs shake. I said, You still get pleasure from life, don't you? He said he does sometimes. He said when he wakes up in the morning he doesn't hate the fact that he's still alive.

I will get the results from the MRI in a few days. I need to remember that there are often false positives with the MRI. That's the origin of two of the scars: core biopsies taken earlier this year, which proved to be negative for cancer.

A quote from Her Baldness, on chemo: "Something has broken into your body and it has murder on its mind."

Austro-Hungarian Empire/Breast Grid

We left the house at about 6:40 a.m. for my MRI-biopsy appointment. The sky was pink over the lake. I knew it was sunrise, and I knew I'd seen sunrises before, but I couldn't remember the last time. I try not to get up during the single-digit hours. I thought of the Hungarian playwright Ferenc Molnar, who was a night owl. (I read about him in a book on insomnia.) One day he had to appear in court for a deposition. He got up in the morning, went outside and started walking to the courthouse. He was amazed at all the people on the street. He said: Do they all have depositions to make?

Molnar was born Neumann (Jewish, of course). And of course even a sunrise would make me think of Jews. You never hear about him but his play Liliom was eventually transmogrified into Rodgers and Hammerstein's Carousel. During World War I he was a soldier for the Austro-Hungarian empire and his dispatches appeared in the New York Times. (I just looked it up and found: "Shot Like Rabbits As They Climbed: Hungarian Novelist Describes Russian Attacks in the Carpathian Snow" from March 11, 1915.)

***
This morning I'd been looking forward to (well, that's going a little far: I was curious about) finding out how a surgeon goes about doing a biopsy with the help of an MRI. When I went inside the MRI last week I lay on my stomach on a mattress/gurney with a cut-out rectangle for my breasts to hang through. I had my head facing left on a pillow. I couldn't imagine how a surgeon would do the biopsy: lying on the floor and looking up at my breasts, scalpel poised like Michelangelo's paintbrush? All was revealed today, though I was asleep for much of it. The staff kept talking about putting my breasts in a grid. From what I could tell, the grid was like a plastic basket that strawberries come in, with little squares formed by the criss-crossed lines. It attached to the cut-out rectangle. So I lay down on this mattressy thing, my breasts caged in this basket, and my head not on a pillow but face down against a face cradle like massage therapists provide, except it wasn't comfortable. The surgeon sat in a chair next to me, and she performed two core biopsies along the outside of my breast. They would send me back through the MRI from time to time, I think to make sure that she was digging in the right place. This is what I think she did: Put a needle in, take it out, put a marker in its place, then send me back under to make sure the market was in the right place. At least that's what it sounded like in my early-morning haze. And I had a Real Surgeon doing this. I had asked the nurse earlier if a Fellow would be doing this to me or an Attending, and he said the Fellow, but the Attending would be there. However, he said, I could ask for an Attending. So I did. I felt a little sorry for the Fellow, who seemed friendly and confident, and even carried my backpack for me afterwards. .

Afterward I went upstairs to the Breast floor for a mammogram, to make sure that two markers had been embedded in the right place during the biopsy. (As I write that, I cringe at the word "embedded." I've noticed how we use it all the time now, because of the embedded journalists with troops in the Iraq war. Is accepting the jargon the first step toward accepting the policies? Probably.)

***
Tonight we were cleaning up the kitchen after making a stir-fry and L said to me, I don't want them to hurt you. And he cried. I'd hardly ever seen him cry and I wasn't sure at first that he really was. He looked a little like Walter Matthau when he cried. And then he stopped.

The Armenian Genocide

A friendly person called me on my cell phone early Wednesday afternoon while I was walking to the Little Cafe Down the Street. It took me a while to figure out that my interlocutor was the heretofore Unjolly Fellow. He was quite jolly, offering to call me back once I got in out of the cold. I said I was just about to go inside. I didn't hear his name at first, and he repeated it, adding, I was there for your biopsy. There? He was the main poker. His sad task (so why did he sound so happy?) was to tell me that I'm definitely not a candidate for a lumpectomy because the tumors in the left breast are all connected. That was a given. He also said that it was clear that the third section of my breast, which he hadn't poked, was also malignant. He said that the MRI had also picked up the presence of two suspicious-looking nodules in my right breast. Nodules, he informed me, are lumps that are less than 1cm; masses are more than 2cm. I didn't think to ask what's in between. There are lots of false positives on MRIs, he said, "it doesn't necessarily mean cancer." I couldn't believe he uttered the word. Maybe no one wants to be the first to say it, but once the crab is out of the bag, it's Cancer cancer cancer; call the pizzeria and order it, a double topping of Cancer; cozy up to the bartender and grab a tumbler on the rocks, Cancer; climb up to the top of the parking garage and shout it to the four winds: Cancer! Let's hear it. Cancer! This finding means that I will have to get up at the crack of dawn next Tuesday so I can have an MRI-guided core biopsy of the right breast. I don't understand how the surgeon will manouver herself around to my breast to poke it. But the Fellow Formerly Known as Unjolly assured me that "an attending" will do it. I think that means a Real Doctor.

That means I had to put off my second-opinion appointment at Pretty Good Hospital, planned for Wednesday.

I had an appointment with a plastic surgeon Wednesday afternoon. His name sounded Armenian and I looked him up on the web and found out that under languages spoken, he listed Armenian. Surprising that someone who's a Baby Boomer speaks Armenian. I thought most of the people my age wouldn't have carried on the language. I'm in the middle of revising a book review of The Bastard of Istanbul, a novel by Elif Shafak, who is Turkish. The book deals with Turkish denial of the state-sponsored massacre of 1915, among other things. It seems as if I've always felt a kinship with Armenians, because of their dark eyes and tragedy, but I don't even remember when I first heard of the genocide. I do remember when I first learned about Turkish denial. I read about the official Turkish government deniers in Peter Balakian's 1998 memoir, Black Dog of Fate. I went to his reading of the book here, during his book tour, because I knew him slightly. I was surprised at the big Armenian turnout. I didn't realize what an important book it was for Armenian-Americans. What I remember most in the book is when he's in junior high and planning to write a report on Armenia. He tells his father, who is pleased. He finishes the paper, then explains to his father that he couldn't find enough information about Armenia, so he decided to write about Turkey. In all innocence. His father, of course, exploded. But the family had told Peter so little about the murders of Armenians that he was purely purely ignorant. It turns out that the plastic surgeon's best friend (or cousin?) had Peter Balakian's father as a dentist, in Englewood, NJ. The surgeon gave me information about a talk Saturday night at the local Armenian center (I hadn't known there was one). I said that my husband would probably want to go to a movie on Saturday night, unfortunately.

We talked about my breasts, too. He showed me before and after photos of patients. He recommends saline implants for me, even though their infection rate is 1:20. That's mostly for smokers and D-sizes, he said. He also said that though efforts to save the nipple didn't necessarily work (it could die; I don't want to imagine what that would be like), such a thing was possible, and I should ask my surgeon. So maybe L was right about hearing her say that. As the plastic surgeon left the examining room he said I needed to have my picture taken (meaning pictures of my breasts) so that he could remember me. And then I realized that I could connect with him about Armenians all I wanted to but the important thing was for him to think about my breasts and how to do well by them.

***
Just a few minutes ago my computer told me that Molly Ivins is dead, at 62. Of breast cancer. She had Inflammatory Breast Cancer, which is not what I have. (Whew. Knowing it's selfish to be relieved.) IBC is less common than "regular" breast cancer with lumps, and has very different symptoms. It is amazing that she wrote almost up until the very end, which is what I plan to do.