Chemo 6/8

Almost done...almost done...that's my mantra. Once again, my oncologist Dr. G. was out, and the nurse practitioner examined me. My husband was disappointed, most especially since he was prepared to "tear him a new one" over the vague information about my surgery schedule and the lack of palliative care. BCH* does a great job with the drug delivery, but not so much with information-sharing or emotional support.

Friends have asked me the following:

Do they have a support group? I dunnoh--can't find evidence of any associated with the hospital. They do have a brochure for Gilda's Club, which offers support services. The Nurse K., the nurse practitioner who examined me this time, offered to give me the contact information for another nurse who had survived breast cancer and is now on Tamoxifen, an estrogen antagonist that has some nasty side-effects itself. It's the first time I've received any offer from BCH staff to be put in touch with another survivor.

Do they offer therapeutic massage? No. As a matter of fact, I haven't seen evidence of any palliative care (i.e. counseling, support groups, meditation or yoga, massage) Some smaller Chicago area hospitals offer these services, but not BCH.

Oh, and I received my first billing for chemotherapy. If I didn't have insurance, would have to pay $2500 per session. That doesn't include the cost for blood work or examinations. Every time Dr. G looks at my boobs for ten minutes: $158.

Am I receiving the best treatment for my cancer? In fact, I probably am receiving excellent care. So why do I feel so uncared for? Perhaps BCH will eventually launch a research study on whether patients are also feeling human beings. I hope the results are statistically significant.

The final chemo drug Taxotere Paclitaxel has a new set of side effects, including bone pain, watery eyes, and rosacea-like pimples and rash on my upper body. My eyelashes and eyebrows are scanty, now. About four or five days after chemo I get very tired and easily winded--probably a sign that both my white and red blood cell counts are bottoming out. My hot flashes are on a more predictable schedule, although one that interferes with early morning sleep. From about 4 to 6 am, it's covers off, covers on, over and over. During this time, sleep is in short snatches until the next one hits.

That's all the news, which as per usual is in the form of a complaint. They were right: when you have your health, you have everything. Too bad I had to get terribly sick to appreciate that axiom.

*Big Chicago Hospital

CTA Stories: Green Limousine

I wanted to use this post to praise my favorite CTA bus drivers, and throw barbs at some others. Of all of the agency employees, I think the bus drivers have the most stressful jobs. The word "multi-tasking" doesn't even come close to what I've seen on the Diversey bus on a typical Saturday afternoon. In addition to answering directional questions, a driver is expected to make sure nobody sneaks on without paying, remember to stop when the cord is pulled, avoid hitting reckless cars, bicycles and jaywalkers, lower and raise a hydraulic lift and then get off and manually pull down a ramp for disabled riders, stay roughly on schedule, and often have his/her ear worn out by some chatterbox who sits up front. Difficult passengers, some of whom have subjected me to sights, sounds and smells I'd sooner forget, are there for the duration. When the man who clearly had gone to bathroom in his pants got on the North avenue bus, most of the passengers (self included) bailed out, choking and gagging. The driver didn't have that option. In that light, it is especially surprising at how many mensches one finds behind the wheel of the Green Limousine.

I have however, encountered a few crazies and garden-variety misanthropes wearing the CTA badge. Some of the more notable:

The young guy driving the Division bus who openly cursed other motorists and got on the PA system and shouted, and I quote, "Get your asses to the back of the bus!" I believe the CTA-favored phrase is "please move to the back of the bus in order to allow other passengers to board." As one of my fellow passengers said, as he was leaving at Clark and Division, "You are insane. I am reporting you."

Also driving a Division bus was an African American woman who launched into an obscenity-laced rant at another black woman with a West Indian accent. Her crime? Pausing too long at the door to give instructions to a man watching her dog. The driver said (cursing redacted) "You people think you're better than us and then come here to steal our jobs!" The passenger began to weep and said that she was going to visit her dying mother in Jamaica, and why was she being treated like this? (I tell you people, why are you still driving? Never a dull moment.) Several people on that bus also vowed to report the driver.

And then there's the sour prick who still works the Belmont route. Instead of doing something for which his personality is suited, like working at a remote fire watch station in the Rockies, he's right in the midst of what he loathes: people. Weirdly, he is also a ringer for actor Strother Martin, and even sounds like him, albeit with a Chicago accent. A few weeks ago, I picked up the west-bound bus at Southport. It was packed, and I backed off the steps to allow several people who had to struggle through the crowd get off belatedly. I paused for one second to see if there was anyone else. "Get on the bus!" he snarled. "I don't got all day!" What we have here is a failure to communicate.

Although most of the drivers are mute and innocuous, the mensches still outnumber the jerks. I already mentioned the driver who allowed two little girls to bring an entire Christmas tree on the bus. Another time, one looked the other way when a little boy got on with a puppy. Pets are supposed to be in carriers, but the child sat directly across from the driver with the sleeping puppy on his lap. He stroked its ears, his face suffused with a pure joy.

Another driver assisted a women in a wheelchair at the east-bound stop at Diversey and Sheffield. She seemed profoundly disabled, possibly with ALS, and even moving the controls on her electric wheelchair was a struggle. As is usual in that neighborhood, someone had parked an SUV at the bus stop, making it impossible for the driver to pull close to the curb. The driver lowered the ramp to street level, allowing a large gap between bus and the curb so that the passenger could maneuver to the corner and up the ramped part of the sidewalk. In her opinion, it wasn't a good solution, and she lit into him. She was pretty abusive, calling him "stupid," and saying he should have dropped her off at the corner. He didn't defend himself, but quietly said, "I do apologize, ma'am. I am sincerely sorry." She continued for a little while longer, and then directed her chair to the corner and deftly rolled up and on to the sidewalk. I was very impressed by this man's grace and composure, and told him so. He thanked me, and said "At the end of my shift, I can walk off of this bus. She probably will never walk again. Maybe I should have pulled up to the corner, I don't know. But I do know that my life can't be as difficult as hers."

Last, the literary bus driver. I was preparing to get off the Belmont bus, holding a paperback in my hand. Traffic was heavy, and we crept toward the stop. The driver noticed my book, and asked me what I was reading. Uh...Independent People. "Is it good?" I'm enjoying it, I said. "What's it about?" I struggled with myself for a brief moment. I looked at this man and saw someone who was blue collar, black and very heavy; he had been automatically filed in my brain under "Different," with a capital D. How would I describe to him a novel which, although historical, is about timeless themes like colonialism, patriarchy, the mystical bond between children and animals, and ultimately how the oppressed sometimes brutally oppress others? "It's about a sheep-herder and his family in turn-of-the century Iceland," I answered lamely. "It's really, really good. The author won the Nobel Prize for literature." He pulled the bus over to my stop. "Let me write down the title and the author." He was very enthusiastic about the novel, and made sure to spell Halldór Laxness correctly, even including the diacritic. "I always ask people about what they are reading. I've read some very good books I wouldn't know about otherwise." I asked him for some examples. He mentioned a few books, some of them more popular works, but one that struck me was Madame Bovary. I wished him happy reading, and continued home. I imagined him relaxing in a big chair, maybe a La-Z-Boy, reading the part in Independent People where, after his daughter's coffin has been tied to the back of a horse, an old man whispers an ancient incantation in each of the animal's ears. "You carry a coffin today. You carry a coffin today." The girl was his last child remaining in Iceland. The passage makes my heart ache, even now. In my mind's eye, the literary bus driver sighs, and puts the book down for a few moments, overcome with emotion.

Photo: Goatopolis

Cancer: What should you say?

As promised, in one of my first posts: What should you say to someone who has cancer? I've heard variations of all of these, and I'm sure I've said a few of them, myself.

Do's

"I'm not sure what to say, but I want you to know I care."

"I'll keep you in my thoughts."

"Please let me know if I can help."

"I (or a family member) survived cancer."

"How are you doing?"


Don'ts

"My grandmother died of breast cancer."
(I'm sorry for your loss, but this is really not the time to share that with me.)

"I'm sure you'll be fine."
(Thanks, but don't minimize the seriousness of my diagnosis)

"My friend went through radiation. It was a horrible ordeal."
(Like I'm not dreading it enough)

"You look really pale."
(Oh, I didn't know I look like hell)

"I can't wait to stop having my period." or "It's just a breast."
(Just because you feel a certain way about your body doesn't mean I feel the same way)

The last one is really a head-scratcher. Some women have made comments to me that seemed to reveal a dislike or repugnance toward their own bodies. That's unfortunate, but I don't appreciate the assumption that I share those feelings. However, unlike one of the sources cited below, I'm not offended by people telling me I have a nicely shaped head. And, I wasn't really offended by the patron who told me "It (my wig) is cuter than your real hair!" She's a weirdo, so I would have been disappointed with anything less obnoxious.


American Cancer Society. What Should I Say to the Person Who Has Cancer?

AlixNorth.com. What Not to Say to Someone Diagnosed With Cancer

Chemo Chicks. Excuse Me?

Roscoe Street

Is this a story about the CTA? Not really. It's not even a story, just some random memories about a place I lived, long ago. The apartment was on Roscoe near Greenview, and the Brown Line elevated train, then called the Ravenswood, was in my back yard. The year was 1986 or 1987. I don't remember exactly.

I was nearly broke, and moved in with my friend Brek in order to save money. He slept in the bedroom, and I was on the couch. We had two fans. Air conditioning was for other people. I remember an entire summer of sweating profusely on threadbare sheets, and waking every time the once-an-hour night train roared past our building. Even so, I slumbered through an audacious tag of our building: LATIN KINGS RULE, with a crown, all in two-foot tall spray-painted gothic lettering right under my open window.

The noise from the Ravenswood train constantly interrupted conversation. I had a friend who lived near the Paulina stop, and when we talked on the phone, he would say "wait a minute" while the train went past his place. A few minutes later, I would say "wait a minute," while it went past me. My roommate and I sat on the back porch with a six-pack of beer and waved at people riding the "El." Many of the older, un-air-conditioned trains with open windows were still in commission. Sometimes a passenger would shout at us. One time, somebody playfully tossed a tennis ball down at us.

The neighborhood, Roscoe Village, was mostly white and working class. An entire building just to the east seemed to house only hillbillies. Two men in the building sat at their third floor window and harassed me every time I walked by. They were always there, day or night. The bodega across the street had very recently been a tavern. Brek's former roommate yelled at a man who was making noise outside the bar after closing. The man finished off his bottle of Everclear, and threw it through the open window, where it shattered against the far wall. I was glad the tavern had lost its license before I moved there.

Mostly, it was a homey, friendly neighborhood. A pizzeria on Southport sold fresh cannoli. In warm weather, people sat on their porches and greeted us. One of our neighbors, a curmudgeonly old guy who always smoked a cigar as he walked his toy poodle Sally, stopped by to grouse about teenagers or our mail service.

Brek, a urban sophisticate compared to me, introduced me to, in no particular order: sushi, Kraftwerk, moshing, Jagermeister, William Burroughs, wearing black everything, Reynan's Bakery (now long gone), and city biking. I owe him a great debt, especially for the sushi intro. Alas, he got engaged and decided to move in with his fiance. I couldn't afford our squalid little slice of heaven on my own, so I left Roscoe Village for a shared apartment in Lakeview. Perhaps it was a special place and time, or maybe being young always makes it so. I don't think I've ever missed a neighborhood as much.

Photo: Joseph Palmer

Chemo 5/8

This was a botched shot, but a rather sublime one. I think I was having a hot flash as well, just to add to the ordinary spit-and-shine polish.

To friends and family who listened to me talk, and sometimes cry, over the phone last week, love and thanks. I was really low, and you helped bring me up. L & E, thanks especially for sharing the details of your own experiences with me. Knowing someone else was strong enough to get through that helped me feel a little stronger, myself.

The hot flashes have reduced in number and intensity, and (knock on wood), I seem to have regained control of my pelvic muscles. I won't have to add Depends to my shopping list any time soon, thank god. I talked to the nurse about it, and she was mystified. She suggested a prescription for Effexor, an antidepressant used off-label to treat hot flashes. Such a trade-off: the side effects of Effexor vs. the side-effects of my violent hormone fluctuations. I declined, for now.

Today was the first chemo with a new drug, Taxotere, On the plus side, it won't damage my heart, like Adriamycin, and I don't have to take steroids or antinausea meds. On the down side, it can cause peripheral neuropathy, i.e. nerve damage in the fingers and toes. Numbness is a common side-effect; severe reactions to the drug include nail loss and residual pain. I did my research this time, and found a study in France where subjects who wore frozen medical gel gloves during treatment experienced minimal neuropathy.

You guessed it: I brought a cooler full of frozen gel pacs and gripped them during my therapy. Nurse L let me do it, although she clearly thought I was a little nuts. It was, uh..uncomfortable, to say the least. But, I just shelled out nearly $200 on private guitar lessons. If freezing my hands for two hours every two weeks keeps me playing, it was worth it.

Funny Post

Ha...gotcha! Have you ever noticed how women are encouraged to joke about menopause? Oye, the hot flashes! Cue laugh track.

Yesterday, I had at least twenty separate hot flashes, and none of them have been funny. Each one seemed to wash away a little bit more of me, like the surf carving away a sand castle. This morning I cried out to my husband as the worse one hit, a nearly indescribable combination of fire and ice, followed up by nausea and abdominal cramps. He stroked my soaking wet head as I trembled and wept.

I'm being turned into a eunuch. In my pelvis, there's a deadness. The flush of estrogen from my body also brings geriatric problems, like sometimes peeing myself when I cough or sneeze. I cried the last time it happened, as much from nostalgia as humiliation. I was a normal woman a little while ago...remember what that was like?

A friend naively asked, "can't you do hormone replacement therapy?" If you haven't gotten that memo, doctors no longer recommend estrogen replacement for menopausal women, especially those with estrogen-receptor sensitive breast cancer, such as myself. Instead, we are instructed to take tamoxifen, a drug that blocks estrogen. Kill the woman to save the person: that's the prevailing theory. Tamoxifen is carcinogenic in itself; taking it doubles the chance of endometrial cancer. I've haunted countless listservs looking for information from cancer survivors, and those taking tamoxifen uniformly complain of non-stop hot flashes, loss of libido, anorgasmia (inability to have an orgasm) and other problems associated with low estrogen. The term "castrated" is often used by women to describe their symptoms.

Anyway, a co-worker told me how she liked the way I mix up the content in my blog: funny combined with "sad, struggly stuff." I'm afraid my funny bone is estrogen-receptor sensitive, just like my cancer, and the sad, struggly stuff is what's left for now.