Lady Doctors vs. Baby Doctors

I'm guest-blogging for the next two weeks at Cancer Bitch, while she concentrates on moving into a new place. I'll cross-post everything here, but do check out her blog if you haven't before. The University of Iowa press will publish her book Cancer Bitch some time next year.

Last week, I had my first gynecological exam since I started cancer treatment. TMI, you say? None of you complained when I wrote about breasts.

I haven't had the best of luck with gynecologists. There was Dr. Shifty, at my old HMO, who constantly glanced around the room while I asked questions, as if seeking an escape route. Then, Dr. Gorgeous, who lectured me about birth control while he was down there. Uncomfortable. The last one, Dr. Soccermom, hurt me during the examination, and blamed me, saying I was "too tense." Pain does make me tense.

So, my expectations were low when I walked into yet another waiting room of an OB/GYN practice; this time recommended by my internist. After filling out the new patient forms, I started to browse the magazine selection. They had a couple of obligatory copies of Parenting, but also a number of news magazines and, to my delight, the latest issue of ReadyMade. If you're not familiar with ReadyMade, it's the bible of hipster Do-It-Yourself-ers; sort of a combination Popular Mechanics/Good Housekeeping for Generation Y. It's a pretty unusual magazine to find in a doctor's office.

One of the big problems I've had with OB/GYNs in the past is the feeling that they're really OBs, and the GYN part is an afterthought. This was first time I didn't automatically feel like a second-class citizen for not being pregnant. Dr. Soccermom's waiting room was full of baby magazines, brochures about breast-feeding, and mini photo albums of infants she caught on their way out. I have nothing against babies; I actually was one, at one time. But how about a little photo album of women you've successfully guided through menopause--hmmm? We're probably not cute enough.

The new gynecologist, who I will now think of as Dr. ReadyMade, was wonderful! First, we met in his office to discuss any concerns, a pleasant alternative to having to ask questions while half-naked and on an exam table. During the examination, he told me what he was doing and took care to cause minimal discomfort. I don't say this about a lot of docs, but he's a keeper.

ReadyMade [Link]

"Gynecologists say the darndest things" Radar [Link]

How to turn a pear into an apple

Just had my first mammogram since my surgery, and I'm relieved to say that the radiologist saw nothing out of the ordinary.

My oncologist recommended taking aspirin or ibuprofen about half an hour before the screening. Mammography is a low-dose x-ray of the breast while compressed to the thickness of luncheon meat. I have some internal scar tissue, and the muscles leading from my armpit to my ribs are pretty tight. On top of big squeeze, it felt like my entire right side was being slowly pulled apart like taffy.

What's with all the food analogies, you ask? I blame my current anti-cancer drug, tamoxifen. I gained about fifteen pounds during chemo, and put on another five during radiation. I don't eat more than I did a year ago, and my activity level is about the same, so what gives? My oncologist said "Some people blame tamoxifen, but it's probably just menopause." I have noticed that doctors are reluctant to admit the extent of drug side effects. This kind of dismissal always drives me straight to MedLine, which is why I'm such a pain-in-the-ass patient.

There's some relatively recent literature linking tamoxifen to excess visceral fat. Visceral, as in gut. I'm trying to get used to my new belly. Ever since I hit puberty, off-the-rack pants ballooned around my waist, even while they were too snug in the hips and thighs. I guess I should thank tamoxifen for transforming me into a more conventionally-shaped fat woman.

"Relationships between tamoxifen use, liver fat and body fat distribution in women with breast cancer." Intl. J. of Obesity. Feb. 2001. [Link]

Second Opinion

Last week, the new oncologist's nurse phoned me. "Can you come in next Thursday?" That was quick. I took it as a good omen. My husband worked from home that day so he could accompany me.

Ah, back to the good old Cancer Center. It was late afternoon, and most of the chemotherapy patients were gone for the day. The remaining patients in the waiting room looked unremarkable--perfectly healthy, actually. I guessed that many of them were waiting for regular post-treatment appointments. Outside, the snow fell in a thick curtain, blocking our view of the lake.

An oncology fellow examined me, first. She took my history and summarized the findings from the scans. "We don't see any obvious signs of metastasis in either your bone or CT scan." Tears of relief welled in my eyes. However, there were a few things which demanded closer scrutiny. The abnormalities, located in my lung, hip and uterus, were likely due to arthritis and other common, but non-lethal conditions. I was going to need further testing to eliminate any doubts.

Dr. C arrived and introduced herself. She was dressed in an attractive sweater and skirt, with black patent pumps. "I have to tell you that I'm allergic to wearing white coats. You'll never see me in one." My husband had some questions for her. "When will Elisa be cancer free?" Dr. C shook her head. "I never use the term. There is no such thing." Even with chemotherapy and radiation, she explained, there was no way to kill all of the cancer cells that may have entered my bloodstream. Therapy from now on would focus on keeping them in such small numbers that they could do no harm. After my radiation was finished, I should start taking Tamoxifen, a drug that inhibits the growth of ER+ breast cancer cells.

I think it shocks many people when they first really understand that it's impossible to "cure" cancer. Cancer will go into remission, a state where no disease is detectable, but that in itself doesn't mean that all the cells are gone. Most researchers don't hope for a cure per se; they look to a future where cancer will be manageable as a chronic disease, much the way diabetes has become.

I won't go into the rest of our visit with Dr. C, other than to say that I felt she addressed my fears with respect and candor, and yet left me with much hope. My husband asked her how she felt about my long-term prognosis. "Knowing what we do now, I am optimistic," she said, smiling.

The Gambler

For the second time this week, Kenny Roger's The Gambler was playing on the intercom in the radiation lab.

You got to know when to hold 'em, know when to fold 'em,
Know when to walk away, and know when to run.
You never count your money when you're sittin' at the table.
There'll be time enough for counting when the dealing's done.

I am far from being out of the woods with this disease. The disappearance of my oncologist, Dr. G, has only increased my anxiety and depression. When I tried to get an appointment, the soonest I could be "fit in" was February 18. I had to call his nurse to ask for orders for CT and bone scans (my idea, not his). It's not clear if he's even read my surgical pathology report, but perhaps he's too busy to pick up the phone for five minutes to discuss it with me. I'd like to thank everyone who has offered advice about second opinions, including Cancer Bitch.

Yesterday, between my scans and radiation, I struggled with the blasted scheduling staff at the Cancer Center. All I wanted was the phone number of a nurse who works for another oncologist there, Dr. C. Exhausted, and sick of being transferred and then stonewalled, I began to cry. It's sad when that works, but it did. I left a (tearful) message with the nurse, asking her if I could be scheduled for a second opinion. One of the techs at the Nuclear Medicine scanning lab noticed my puffy, red eyes, and asked me what was wrong. Trying to hold back the water works, I told her about how my doctor appeared to be missing in action. Later, she slipped a piece of paper into my hand with the names of two oncologists not associated with the Cancer Center. "They're both terrific. The second one actually gives his patients his personal cell phone number." Imagine that; a doctor who actually talks to his patients.

Thanksgiving

I had a great Thanksgiving weekend, due to my family. Mom, bro, sis, sis-in-law, niece: thanks for coming to Chicago this time around. And, I'd like to bestow a special Green Badge of Courage to my niece's boyfriend, who tolerated hazing involving a certain cruciferous vegetable with good cheer.

My surgery is scheduled for this Thursday. The surgeon, Dr. B, still thinks we can manage a lumpectomy, despite the discovery of a suspicious spot closer to the nipple. The greatest physical trauma will occur when the fat pad in my armpit is removed, along with a number of lymph nodes. Recovery will be painful, and there is an elevated chance of permanent edema and swelling in my right arm. Will I be very disfigured? I can't help but wonder.

In discussing the growth of the tumor, I alluded to the fact that it had been growing for a year. "Oh no, this has been growing for three or four years, at least," he corrected. That really floored me. I had this thing in my breast for that long? What is the point of getting regular mammograms if something like this can go on for so long without being detected? I'm still trying to take something productive away from that discussion, but all I can muster is that the diagnosis techniques which I thought would protect me seem nearly useless.

Chemo: The End

Goodbye, Baxter 6300 I.V Pump. I'll miss hearing you erupt into loud alarm after I exercised the utmost care while rolling you into the toilet. You always waited until I was seated on the throne, you joker. But most of all, I'll miss the way you drip, drip, dripped poison into my veins. May we never meet again.

I completed the 8th and final chemo today. I told Nurse L that she was the only thing I was going to miss about it, and she gave me a big hug. Dr. G, who I'll see again after my radiation, examined my breast and said that the tumor looked "good," and that it was hardly palpable. Tomorrow, I call the surgeon* and try to get a tentative date. However, he'll probably want another MRI before proceeding. The process of arranging cancer treatment is reminiscent of using more than one contractor on a home improvement project. You have to do all the coordination with the different trades, continue to monitor the work quality and progress, and then the flooring guy (or oncologist) suddenly doesn't show up for a month. I need to hire a general contractor--one that specializes in cancer.

There's one more plus to ending chemotherapy: I won't have to buy a yet larger pair of "fat" jeans. I stepped on the scale to be weighed today, and discovered that I had gained another three pounds since my last visit. I weigh more than I ever have in my life. And I'm bald. Fortunately, both are reversable.

*Yes, my husband and I both are positive the oncologist told us his office would contact the surgeon. You have to get it in writing from these people.

Chemo 7/8

In honor of National Breast Cancer Awareness Month (just in case you didn't notice all of the pink crap for sale everywhere):
6,000 Runners Fail To Discover Cure For Breast Cancer

Before today's chemo started, a nurses' aid took my blood pressure, temperature and checked my weight. I've gained 11 pounds since starting chemotherapy. Not too surprising to me; lately I've been straining to get into jeans, and zipping skirts up three-quarters of the way and covering the gap with a long top. Weight gain during chemotherapy for breast cancer is very common. It is poorly understood, however. It could be due to hormonal changes, stress-related overeating, or lowered activity levels. I am an over-achiever in this regard--apparently a 10 lb. gain is typical of women receiving a six month regimen of chemotherapy, and I've only had not quite four months.

During my session, Nurse L dragged Dr. G in to take a quick look at me. It was the least he could do, seeing that he missed the last two scheduled appointments. I was already hooked up to the drip, so disrobing wasn't an option. Thanks to an American Apparel t-shirt bra and my rapidly eroding sense of modesty, I just hoisted everything up to give him a look-see. "The tumor appears to be shrinking," he confirmed. He seemed to think I was doing well, otherwise. We asked him about the surgery, frustrated with the fact that we had no idea when it was going to actually happen. He said that his office would contact the surgeon when I have my final chemo. I'll believe it when I see it.

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

Chemo 2/8

My husband took this picture, but only under duress. I wanted to demystify the process and show me, happy chemo patient, during infusion. However, it's difficult to crack a real smile when something called Cytoxan is being dripped into your veins. Cell poison, that's essentially what the name means. Nice if it's just the cancer cells it's going after, not so nice if the poisoning is more indiscriminate. The drug stops or slows cancer cell growth, but also interferes with bone marrow, hair and nail growth.

Speaking of hair growth: I better get some flattering pics of myself in short hair while I still have some. Last night, as I tried to pluck a few wayward eyebrow hairs, I realized that I didn't really need tweezers. I could pull them out with my fingernails. I tested a leg hair. Yep, came out with hardly any resistance. It seems that every time I get used to something, a new freak-out is waiting just around the corner.

My chemo wasn't scheduled until later in the morning, so the earlier appointments were for blood work and a meeting with the oncologist, Dr. G. He once again left us alone in a room, but this time we sat there until someone collected us. When the pager for my chemo therapy vibrated, we then trooped up to the treatment door to wait for a technician. A distressed-looking woman and her husband blocked our path. "Do you need water?" The technician asked. The woman nodded mutely, her face desperate. The nurse led us into a treatment room, which this time was a shared space, with threadbare recliners and a curtain separating the two room halves. The water woman and her husband came in behind us and sat on the other side. She peeked around the curtain, putting a hand on one of the large medical wastecans on our side of the barrier. "Sorry folks, I need to borrow this. It isn't gonna be pretty." She barely got back to the other side of the curtain before vomiting.

While waiting, I had been reading one of the cancer-oriented magazines strewn around the oncology center. I think it was called CancerWoman. In it, an article described the importance of dignity for patients, especially those with terminal diagnoses. Dignity was in short supply in our shared chemo room that day, as the poor woman retched uncontrollably next to two complete strangers. The nurse came in, and said "all the private rooms are full right now." The oncologist then arrived and asked about antinausea drugs. No, she hadn't been given any yet. I heard him say "Ativan drip." There where whispers assuring the couple that it was inexpensive. Oh God, to be uninsured or underinsured with this illness. Forget me, pray for them. In half an hour, she was snoring peacefully.


Loaded full of my own dose of Ativan, I had no objections to a stop at our local diner, Clara & James (although some say James got the heave-ho), for a post-chemo omelette. I have a lot of affection for this little place, especially after a recent make-over involving kelly-green vinyl and a mural with dozens of unrelated cartoon characters. That's Yosemite Sam peeking out from behind the tree. And, that's my husband on the right. Two vegi omelettes with toast, a coffee, tomato juice and Sprite, under $20. Two thumbs up!

Although I ate with gusto, I will probably feel pretty lousy later on, especially later tonight. Already, the Cytoxan has my head pounding, and nausea is creeping its way back into my consciousness. Chemo is like that, and you take your pleasures when your stomach will have them. Although he was not exactly referring to omelettes, I think these lines from Andrew Marvell's To His Coy Mistress are still appropriate:

Let us roll all our strength and all
Our sweetness up into one ball,
And tear our pleasures with rough strife
Thorough the iron gates of life:
Thus, though we cannot make our sun
Stand still, yet we will make him run.

Everything Gives You Cancer

Here's something new to worry about: the possible link between exposure to artificial light and cancer. During the course of one of the most significant womens' health studies every conducted, now known as the Nurses' Health Study, researchers noticed an unusual factor which seemed to correlate with higher rates of breast cancer.

Several years later, members of Willett's team reported that women who frequently work night shifts seem predisposed to develop breast cancer.

It was just as Stevens had suspected. He had hypothesized that nighttime illumination, by interrupting the body's mainly nocturnal production of the hormone melatonin, might increase the risk of breast cancer. Animal experiments and surveys of people over the past 2 decades supported that hypothesis without proving it, says Stevens, currently at the University of Connecticut Health Center in Farmington.

Breast cancer rates in industrialized countries are significantly higher than those in undeveloped countries. Of course, exposure to environmental toxins and other factors could be at play. But, the melatonin theory is intriguing.

And sleep itself is not a factor, but actual hours spent in darkness.

"Blind women, by contrast, have unusually low rates of breast cancer and high average melatonin concentrations."

Whole article here:

Bright Lights, Big Cancer. ScienceNews Online. Jan 7, 2006.

I guess all women who have been diagnosed with breast cancer go through a period of being angry about their previous treatment by the health profession. I am no exception. I am over 40, childless, and (ahem) have been known to have two or more alcoholic beverages per day, all factors which are associated with a greater chance of getting breast cancer. My youngish ob/gyn, Dr. CB, for whom I have less affection on a daily basis, always seemed accusatory as she recited them. Perhaps she spoke blandly, but I always could hear the meta message: "If you would just have some babies and stop boozing it up, like the mother nature intended..." Perhaps it was all the baby magazines in her office, as if the only point of maintaining my reproductory health was to make one of those possible. Since there are men reading this, I'll spare you some more graphic comments which also led me to believe that she may have considered my existence as a woman superfluous.

Looking at the research, one can see that all the above factors do have a similar result: denser breast tissue. Having babies, breast-feeding them, and (for some reason) minimal alcohol intake all serve to reduce breast tissue density. Every time I've had a mammogram in the last ten years, it's always been the same thing: Oh, we couldn't get good pictures, so now we have to give you an ultrasound. Each time, I've been needlessly exposed to radiation which could only serve to put me at higher risk, while having to wait to get a diagnostic procedure which could actually take a picture of any potential tumors. If any women out there have been getting the same message about breast tissue density, I suggest trying to get an order for an ultrasound right away.

And if you have the name of a good ob/gyn who actually is interested in women's health, as opposed to catching babies, I'd much appreciate the referral.

Stupid Doctor Tricks

Did you know that when a physician shakes your hand and says, "It was nice meeting you," and leaves the room, that you're supposed to stay there indefinitely? Neither did I.

On Monday, my husband and I paid our first visit to the oncologist, Dr. G* at Big Chicago Hospital (BCH)*. The entire oncology center at BCH must be enormous, if the ballroom-sized waiting room is any indicator. A number of patients in various stages of treatment waited with us. One man, about 35 years old, played cards with a woman who was probably his wife. He looked like a fitness buff, with a broad chest and bulging biceps. He was also completely bald and his skin was a deep, jaundiced yellow.

After an oncology fellow took my history and examined me, Dr. G arrived and re-examined me. Since BCH is a teaching hospital, I am nearly always examined by more than one person. Two years ago, I was admitted to their emergency room with chest pains. While I was awaiting the results of a blood test, a small group of what looked like teenaged boys, dressed in doctor costumes, came into my curtained "room," eyed me warily and then listened to my heart. Interns, apparently.

My husband and I were directed to a conference room to await the arrival of both docs for further consultation. I decided to take a bathroom break, and immediately became lost in the rabbit warren of offices, examination rooms, and labs. I stopped in front of a desk where two women wearing lab coats sat. "Excuse me, can you tell me where Dr. G's conference room is located?" They both stared at me. And said nothing. For an uncomfortable length of time. Finally one of them broke out of her trance and said "Are...you one of his patients?" Apparently, because I now carry all my medical records and notes in an uber-nerdy accordian file with a handle, they thought I was there to do a presentation. I doubt that my jeans, WLUW tshirt and Dansko sandles were consistent with the normal attire of an medical oncologist.

After I had been safely led back to the patient conference room, Dr. G and fellow appeared. Dr. G recited his chemotherapy script, the rote quality of which was entirely understandable considering how many times he has to do it each week. We had many questions for him, and after fifteen or twenty minutes, he and the fellow were showing signs of restlessness. My husband however, was not going to be rushed. He kept up with the questions, while Dr. G attempted to struggle to his feet two or three times. Once we finished, Dr. G. extended his hand to me and my husband and said it was nice meeting us. He mentioned that his nurse would contact me within 36 hours (why such an curious range?) to schedule my chemo. As he was leaving, he told the fellow that I needed a prescription for a "cranial prosthesis." She nodded, and then herself bid us goodbye in a formal manner which seemed to indicate "you're not seeing me again, either." Neither of them asked us to wait. We continued to sit in the conference room for a little while, confused. After a five or six minutes, we left.

Two days later, after never receiving a call from Dr. G's nurse, I located her number and left a message on her voice mail. She returned my call, and said that the fellow told her that we had left the room and that she "didn't know where we went." Never mind that all three of my phone numbers are in their files and I signed a waiver to allow them to share this information. The nurse tried not to sound appalled when I informed her that I had not received a prescription, nor had anyone ordered the tests required before chemo can commence. Did anyone mention self-injection with a drug called neulasta? No...I definitely would have remembered hearing about that. Anyway, I'm now scheduled for tests and a call-back is promised tomorrow for the chemo appointment. Lesson: when it comes to actually coordinating treatment, make sure you talk to the nurse ASAP. The doctors just do the fancy stuff.

*Names of people and institutions are changed because...I don't want them to find this using google.