The Real Evil Undead

My new Macbook has a built-in camera, which gives me endless opportunities to be horrified by my own aging process. The craned-neck pose is good for disguising a softening jawline. Another observation: my hair doesn't seem to be growing. I mean, it IS growing, but at a glacial pace. At this rate, my bangs should reach my eyebrows by early 2010.

Recently a few people have asked me how I'm doing, always with penetrating eye contact and an emphasis on the first syllable of "DOing." I had my six month post-treatment mammogram in November, and saw my oncologist in December. There was no detectable sign of cancer. Each milestone is cause for hope, but I'd prefer to hold off on the high-fives for now. It's not that unusual to be "cancer-free" right after chemotherapy and radiation.

Cancer is kind of like--you know how in horror movies the undead appear in the context of their pre-zombie jobs? It adds some macabre humor, especially if the contrast is extreme. For example, there might be a zombie ice-cream truck driver staggering around his vehicle (which is still playing a continuous loop of "Turkey in the Straw") wearing a blood-spattered white uniform. Cancer cells, like zombies, once had perfectly normal jobs. My mammary gland cells were given the assignment to wait around for hormonal signals to start producing milk. Since I never gave them the go-ahead on that, they used their spare time creating painful little lumps and bumps of calcium in my girls. And then, some of them turned into cancer.

Normal cells are supposed to eventually die, a process called apoptosis. A cell with damaged DNA may not go into apoptosis, and the immune system has to detect and then assassinate it. Recent research hints that we all have had cancer, but in most cases the body's own death squad hunts down and kills it before it is detectable.

As I mentioned, my breast cancer used to be normal mammary cells. Unfortunately, once they become "zombies," cancer cells not only refuse to die, but multiply rapidly. They may also wander into the lymphatic and blood streams, which carry them to other body systems, where they continue to multiply. This is called metastatis, and it is how cancer of a non-vital organ system, like mammary glands, kills. Breast cancer, because of its previous legitimate "job," is especially attracted to calcium. Because of this, metastasis sometimes occurs in the bones.

Cancer is still maddenly difficult to detect until it's almost too late; after treatment, there's no way to know if it is really gone for good. It is ironic that a management regime is in place for a relatively new disease, HIV/AIDS. Although the disease and the drugs used to treat it are debilitating, HIV patients can live for nearly normal life spans. Perhaps instead of wearing pink t-shirts plastered with corporate logos and "walking for a cure," we cancer survivors should look to the examples of AIDS activists. We can chain ourselves to gates and scream at health officials and otherwise become so disagreeable that someone will figure out how to give us our lives back for good.

Hi Mom

My mom wanted to know how my hair was coming, so here ya go. It grew back curly, which I have heard is common with post-chemo hair. It should eventually return to it's normal texture. There's quite a bit more gray in there than is evident in the photos, but for now I'm leaving it as is. Time for a haircut...the first I've had since July.

Breasts

I visited Dr. B yesterday, and as I hoped, he removed the drain. So why do I feel so lousy? Ever since Monday, I've been afflicted with a general malaise, and more concrete symptoms, such as aching joints. Others have told me that healing from surgery can be draining. Every conversation I had today seemed to have been broadcast from some distant planet.

With the drain removed, and swelling reduced, I can better see the end results of surgery. There will be a little dent on the outside of my right breast, and any illusion of symmetry between the girls is now officially over. In fact, asymmetry is very common. When it comes to breasts, "normal" includes countless shapes and sizes. The previous link, a site advocating public breastfeeding, is probably NSFW. Breasts, despite doing unsexy things like feeding babies and getting cancer, are still officially dirty in this country.

And not having breasts is dirty, too. Twisty at I Blame the Patriarchy found that, despite having a double mastectomy, going topless while swimming was not an option. It upset the other women at the pool, apparently. Although I'm not as bold as Twisty, I wondered if I would feel self-conscious undressing after a mastectomy, even in front of other women. When I exposed my bald head in public, it most often was women who stared at me. Although some of the scrutiny was friendly, though artless, some was cold, without a spark of kindness or concern. Perhaps a cancer patient who chooses to not cover her bald head, much less her mastectomy scars, is considered to be weird and threatening.

Fuzz

My hair is now visibly returning, although it will take a while for the stuff on the head to look like "hair." Downy eyebrows and eyelashes are sprouting as well.

Other good news: Dr. B, the surgeon, called today. He had the results of the pathology reports. The perimeters showed no additional cancer. Eleven lymph nodes were removed, and of those, six were cancerous. He told me this was not surprising or necessarily bad news, since they presumed that several lymph nodes would be involved. So, in his words, "no addition excision is required." That means, no going back for a mastectomy, at least not during this particular battle with the disease. Now, I have to look forward to radiation and hope that cancer will never return.

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 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

The New New Look

On Sunday, I shaved my head. Depressed by messy hair loss, I decided that being bald had to be be better. And, I wanted to see the oversized occipital bone that has made it nearly impossible for me to wear most women's hats. It is very impressive, but I don't think it looks out of proportion with the rest of my enormous head. I also have a dent on the top back of my skull, approximately where one of the fontanelles, or soft unclosed spots found on infant skulls, is located. Mom, any idea? If you dropped me on my head, all is forgiven. It would explain a lot of things, actually.





I can't remember what this wig was called, but from now on it will be referred to as "Elisa, Jr." It has too much hair on it, and I think it looks like a freaking wig. But the real problem is that it's August out there, and wigs and Chicago heat and humidity do not mix. I've been wearing a scarf to work, when I'm not sticking my bald head into a colleague's office just for a reaction shriek. Showing up for meetings bald is fun, as well. It really speeds the agenda along.

Loss

I'm losing my hair; it's coming out in clumps. After washing my hands, I absent-mindedly swiped a wet hand across my crown, and my fingers were coated with it. "It's just hair," I told myself, but I and my spleen are feeling more metaphoric. It reminded me of other losses, and choices not made, or made carelessly. I was full of September thoughts.

Recently, I've been listening to a recording of a guided meditation called the Metta Bhavana, or cultivation of "Loving-Kindness." Loving-Kindness is, to perhaps oversimplify, compassion, patience, and understanding. In the meditation, the practitioner is asked to imagine wishing wellness, happiness, and freedom from suffering to oneself and to others.

Especially now, it is helpful for me to remember how universal is the experience of suffering. As I rode the train home tonight, I looked at the faces of my fellow passengers. Some were expectant and relaxed, and others careworn and distracted. And, I realized how much company I had (alas) in both my illness and my regrets. My fellow passengers.

Wiggin'

Yesterday, with nothing on my stomach but a homemade ginger-ale, I headed up to Skokie to purchase a cranial prothesis. Jerome Krause Fashion Hair, a promising name if ever I heard one, is located in grayish little medical building. There were nearer fake hair emporiums, but Krause was recommended by a friend who knows a couple of women with alopecia, and they swore by the place. It's also in center of the Orthodox Jewish community in Chicagoland, and those woman know from wigs.















Our introduction to wig-shopping was a little rocky at first, since our stylist Linda had not been informed of our appointment. But she dropped the hank of premium Ukrainian hair she was dyeing at the time, and served us with enthusiasm one rarely sees directed at chunks of inert protein. She brought out boxes and boxes of wigs, some hand-sewn, some machine-sewn, some synthetic, some human. Oh, the Russian hair is the best, she said. I patted some Russian hair, and it was sexy, smooth, and oh god...whose head did this hair belong to? Too disturbing. I started hearing that Wallace Shawn monologue The Fever in my head, and I couldn't consider wearing it. Let's buy some hair made in a sweatshop in Thailand, shall we? Much bettah..

I always knew I had an enormous head, confirmed every time I tried on Easter bonnets at Marshall Field's, and all of them perched on the top of my skull, like those comical little hats you see on lady clowns at the circus. Linda measured my head. "Is it huge?" I asked. "No, no..you are in the average range, 22 inches." What was the large range? "22 1/4 inches and above." My head was only largeISH. I also had, Linda informed me, a pronounced occipital bone, which was why wigs that looked great on most women made me look like I had a football coming out of the back of my head.


Because of the "hump," we decided to go with sleeker wigs, although I think this one goes a bit too far. It makes the fashion statement: I'm a high-strung German Philosophy doctoral candidate who chainsmokes and uses the word "bricolage" in regular conversation.









Then, there's this wig. I believe it was called "Cheryl," but I like to call it "MILF." No, no and no.



















This was called "Danielle." I call it "WTF?"


















Finally, we save the best for last. My husband modeling the "Phil Spector." Actually, it was "MILF" turned a little sideways.

I finally settled on a sassy red bob, and Linda clipped and styled it into a more hairdo-like shape. I'll post that later, since I still think it needs a few tweaks.

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.

A rag, a spleen and a hank of hair

I am troubled by a recent awareness of my spleen. For the last two or three days, I've awakened with a dull backache on the left-hand side, and a feeling that there isn't enough room in my thoracic cavity for all the things that want to fill it. It is probably a side-effect of the drug Neulasta, which I self-injected on Wednesday. The drug, which is intended to stimulate white blood cell production, also causes spleen enlargement.

In ancient humoural medicine, the spleen was regarded as the source of black bile, or "melancholia," an excess of which could lead to a dark and brooding disposition. This last month has given me much to brood about. The dark thoughts, mostly about the big dirt nap..those have been with me as well, although daylight and friendship can usually dispel the worse.

In light of such spleenic thoughts, it seems silly to dwell on that ephemeral crown of women, or at least for yours truly: hair. I was always good at growing hair. Even in my mid-30s, I had a thick cascade of the stuff that fell to my waist. It was a powerful feminine totem: in absence of a high cheekbones or hourglass figure, I was still the woman with the big braid. It may not have been the most flattering look, I'll admit. In my wedding album, there are a couple of photos of my husband in blissful pas de deux with what looks like Cousin Itt from the Addams Family. I tried short hair before, but was always dispirited by the number of times I was called "sir," and the feeling that I just wasn't really pretty enough to pull it off.

In anticipation of hair loss due to chemo, I had a little hair-cutting party at Big Hair, in Roscoe Village. My friends Celia and Kerri provided emotional support and also documented the shearing. It wasn't as traumatic as expected. Just remember to call me "sir" with a smile, and I promise not to hit...very hard.

Before






Floor






Cripes...




More from Celia's album

C & K: love and thanks

Can you make me look like Uma Thurman*, except bald?

Today is my late day at work, and I used the morning to run some errands in the Loop, including getting my driver's license renewed. At Monroe and Dearborn, a couple of husky young men approached me. One of them said, "Excuse me, ma'am. Can I ask you a question?" I could tell he was gearing up for a sales spiel. "Do you get your hair cut at a salon here in Chicago?" Yes, I answered.

Some of the big chain salons stir up business by trying to solicit new customers off the street. I was surprised this time, because they usually target areas near college campuses, and frankly, I am the wrong age. This is the first time I've been approached since I hit 40. Not that I mind being ignored; a couple of times after I rebuffed sidewalk hair hawkers, they insulted my current cut. One time, near the end of my run as part of the youth demographic, one of them muttered "Ah..you're too old for us, anyway," as I walked away.

Back to this morning: For a second, I was tempted to mess with him. Perhaps listen to the entire script, looking at first slightly skeptical, then show a little more interest, and finally ask him if the salon had any special deals for bald people. Instead, I put a hand on his meaty arm, and gently interrupted his pitch, "I don't think we can do business, sweetie. I'm starting chemo tomorrow."


*I am not trying to increase hits to my blog by using Uma Thurman as a tag. If I wanted to do that, I would use Scarlett Johansson, instead.