Reminder: "Pole Dancing" at Dutton's, Sunday, 2-4 pm

Just a reminder that I'll be reading "Pole Dancing" at the IWOSC Reads Its Own event tomorrow.

WHEN: Sunday, July 15, 2-4 pm

WHERE: The Outdoor Courtyard at Dutton's Bookstore,
11975 San Vicente Blvd., Brentwood

For anyone who's interested, we'll be crossing the street to the New World Cafe for a drink, snack or meal after the reading.

Yoga

Last Friday at yoga I was depressed and somewhat weepy. We often do partner work and that day we paired up to help one another do dancer's pose. It's what it sounds like: you do an arabesque arching your back and holding the foot that's behind you as you keep pushing it back. Here's what I mean. The help was to critique your partner's form. My partner was one of The Twins in the Back. The Twins are girls who look about 20 and have dark, wavy hair. Usually they partner with one another. You can't blame them; they're perfectly matched by height and weight. Lately they've come with a third girl who's shorter. I'd said hello to them but never talked to them before. They always stay on the back row, in a corner. This time only one of them was in class. She asked me about my head tattoo and I told her I was going through chemo. She said that she went through chemo "in my country." She's from Peru, it turns out, and she was diagnosed with lymphoma at 14. She was in the hospital once for two months. Overall, she had chemo and radiation for two years. It was in Lima, and she lived about a mile from the hospital. She said her family was really close, that there are four girls. She also said it was very hard to lose her hair at 14. It makes you stronger, she said. She was reassuring because I think she could tell I wasn't having a good day, to say the least.

Today in class all three were there, and all in the back. I did partner work with my friend G. I wanted to at least catch the eye of the twin I talked to last week. But I couldn't tell which twin she was.

What Grows Around, Comes Around

I made arrangements for five "freecylcers" to come to our house to harvest apricots at 7:30 this morning. Dave showed up with a gift of a half dozen Japanese cucumbers that he grew in his Alhambra community garden.

It was fun to listen to the freecyclers chattering away like fruit-hungry squirrels while they harvested. It turns out that two of them knew each other from previous "transactions."

My cleaning lady asked me yesterday if I still had a hutch that their newly adopted bunny could use, but both our rabbit and his home are long gone. Instead, I posted a request on the San Gabriel Valley freecycle list and immediately heard back from a Pasadena resident eager to get rid of hers. That offer came from none other than Amy, who arrived this morning with her toddler daughter to pick fruit.

I'm off and running now for two appointments at City of Hope - a CT scan and bone marrow biopsy.

Day of Rest

I woke up this morning with nausea, the runs and throwing up yellow bile. I canceled two City of Hope appointments (one a consultation for the Hickman catheter that will be installed next week and one for a CT scan) and then slept for four hours straight.

I'm feeling much better now, just TIRED. It's ironic that the sickest that I've felt has nothing to do with the cancer or the chemo.

The Wild Girls of Genetic Counseling

Today I went to the Cancer Genetics Program at Fancy Hospital to start finding out if I have either of the BRCA gene mutations, more common among us Ashkenazim than the general population. The mutations increase a person's risk for both breast and ovarian cancer. If I have the mutation, I'll send my right ovary into storage. (The left has already gone to its final reward.) I was the only patient in the office, which just had three chairs in the waiting room. It was so odd and quiet compared to the vast waiting area of Chemolandia. A chirpy intern had interviewed me on the phone already to gather all the information about cancer in the family. (Yes, we have cancer, we have many kinds of cancer: colon, endometrial, breast, stomach, lung, skin, parotid gland. Not to mention leukemia and Waldenström’s macroglobulinemia.) The intern came out to get me and I joined her and the genetic counselor, who was tall and blond and said, Someone's been writing on your head. The intern explained everything to me via diagrams in a book. She did a good job. Based on my family history, I have an 18 percent chance of having a BRCA mutation. I decided I wanted the blood test for it, and I also agreed to participate in some research, so four tubes of my blood were collected.

The blonde measured my head to see if it was big. It's not. It's normal. I always thought it was big, but that's because of the bulkiness of my former hair. There's a rare syndrome, Cowden, which is caused by a genetic mutation and makes you more likely to develop breast, thyroid, uterine and maybe colon cancer. I may be tested for that mutation, too. Besides a big head, other symptoms of Cowden syndrome are awkward gait, skin tags and bumps, what sounded like "hammertoes" in your colon, and lipomas. I've had a couple of random bumps removed and also a lipoma (which grew back). A lipoma is a fatty (lipos=Greek for fat; think liposuction...and My Big Fat Greek Wedding) tumor under your skin. I have one on my upper arm that grew to replace the one that was cut out. At the time of the surgery, I asked the surgeon to show it to me, and he did. It was yellow like chicken fat. So now my homework is to get the pathology reports from the bump- and lipoma-ectomies and my colonoscopy. The Counseling gal said tongue and mouth bumps can be part of the syndrome, and she checked out a tongue bump I've had for about 15-20 years. She looked around my mouth and gums. I felt like we were checking for ticks. (My friend D asks: What's considered foreplay in the Ozarks? Checking for deer ticks.)

I have to fill out a form to help researchers looking at another mutation. The counselor said there is follow-up for that study every two years. So people will call you up and ask, Do you have breast cancer? I asked, picking up an invisible phone. I picked it up again, Do you have cancer? Do you have cancer? Are you dead?

It was that kind of atmosphere, where I felt I could do that. If those two are any indication, genetic counselors are a load of fun.

Today was the first time in five days that I was happy. I didn't feel like crying. I could laugh. It made me realize how miserable I'd been feeling.

I'll get the results in about four to five weeks. If I have BRCA1 or 2, then I'll have to think about getting my right breast removed, too. L and I have been saying that the mastectomy was nothing compared to the chemo, but still the mastectomy was something. And those fucking drains stuck inside my body! At least if I do have to get the second breast removed, I'll be grateful that I haven't had reconstruction yet. I could get both breasts filled up at the same time.

Years ago I was friends with a genetic counselor. We met when we were docents for the Chicago Architecture Foundation. When she gave tours of Glessner House, she'd say: See that cabinet over there? It's 100 years old...and it's never been opened. Her father gave Jewish tours in New York, and gave us a private one once of the Lower East Side. Our friend had breast cancer. And then she died.

I'm a rarer bird than I thought.

During my first appointment with a doctor at the City of Hope, I pointed out the crepe-paper like, wrinkly skin surrounding my arm pits. When she quickly dismissed it as "dry skin," I, quite frankly, wanted to jump from the examining table and down her throat. Instead, I sat calmly, thinking that it didn't take a certification in dermatology to see that this weird, crinkled skin had nothing to do with forgetting to apply enough Jergen's skin cream.

Since that first pre-treatment visit, my skin condition has grown progressively worse, especially on my right arm. I'm so self conscious that I've stopped wearing sleeveless tops, even on the hottest days. I'd rather swelter than sag.

I eventually asked my nurse practitioner if she had ever seen anything like it. She concluded that the sagging, crinkly skin was the result of weight and muscle tone loss. I considered this a totally illogical conclusion because the hyper wrinkles preceded the chemo treatment and a ten-pound weight loss is not enough to account for sagging skin that looks like an aging elephant's.

I finally worked up the courage to show my hideous skin to my current, beloved doctor. His conclusion was no more satisfying. He was certain that the condition was not disease-related and implied that it was the result of aging.

Let's recap here: dry skin, weight loss, aging. I just wanted, at the very least, for a medical professional to acknowledge that my disturbing skin condition was not NORMAL.

I consulted with an Arcadia dermatopathologist this afternoon. (I made the appointment weeks ago, on the recommendation of a stranger I met at Wild Oats - a Whole Foods-like store in Pasadena.) As soon as Dr. Chang took a look at my skin, his eyes lit up. "It looks like granulomatous slack skin syndrome," he pronounced.

"Would you like to see a picture of it?" My condition has a name and a picture? This was all too good to be true. He pulled out his weighty dermatological medical text and flipped to the page describing the slack skin syndrome. Sure enough, the photo looked just like my skin. And, drum roll please, the disease is a type of T-cell lymphoma.

It's no wonder that none of the other medical professionals had a clue about this. According to the medical text, there are just 30 documented cases. (Apparently, a few more cases have been cited since the medical book was written. A quick Google search shows the number at nearly 50 now.) Dr. Chang could barely contain himself. "This is one for the textbooks," he said with glee.

I love his pull-the-pieces-of-the-puzzle-together approach. He wants the year-old slides of the punch biopsy taken by my first dermatologist. The biopsy was taken from what I call the "raised islands" in an area that now sports the wrinkly skin. He also wants copies of the torso photos taken by an ocular surgeon so that he can compare pre- and post-chemo conditions. (I didn't realize it until looking at the doctor's digital photos, but the slack skin has spread to my back torso.) I've made an appointment for him to do a skin biopsy on Monday, July 16.

At this point, I'm not sure how all of this relates to my mantle cell lymphoma (MCL) because MCL is a cancer of the B cells, and the slack skin is a disease of the T cells. I'm just thrilled to finally have a logical explanation and hope for treatment.

(My skin might be a slacker, but I'm not!)

Suffering

If anybody ever offers you the choice between suffering and depression, take the suffering. And I don't mean physical suffering. I mean emotional suffering. I am hereby endorsing psychic suffering over depression.

Don't get me wrong; suffering, though universal, and though its universality provides the basis of Buddhism, is bad. Today I suffered. It meant being weepy, rageful at the drop of a pin, filled with ire at someone for being 14 minutes late (when it didn't matter at all; and I didn't show my rage) and at a fucking stupid fucking imbecile waiter who didn't know that a goddam fucking matte is supposed to be dark and smoky, and not the color and taste of pale green swill with little green specks in it. (I didn't yell. I had a sharpness to my voice a few notches below sarcasm and I smiled deceitfully. I gave a good tip.) At the coffee house and after I was weepy from time to time and not able to balance in Warrior One pose in yoga because my toes were numb from the horrible Taxol. I wept into my purple yoga mat while folded into child's pose and then wept face up into the open air with closed eyes and sweaty head (my perpetual clammy head, compliments of Taxol and menopause) while lying on my back with my legs in butterfly and then I accepted defeat, that the weeping would not end, and rolled up said mat and walked up the street to the drugstore to pick up some refills and a drug that Nurse L had just called in to combat the numbness. Suffering meant crying out when a person crossing the street with an umbrella over her head nearly ran me down, and suffering was going to the drug store and finding out that the very new dolt of a clerk didn't have my new drug, it would take ten minutes, he said. I was weeping and hovering at the counter like a desperate addict in my rain-dropped-on bald head, t-shirt and torn shorts, and I went back to him and said, Could you give me just a pill or two for now, and finally, Could you make a little faster because I'm in a lot of pain, and feeling a little guilty because I wasn't in pain-pain, not about-to-die-and-double-over pain, but in weepiness pain, the pain of not wanting to be there, standing around and weeping and feeling a hole in my heart of desperation and sadness and rage. A dark wound in my heart. And suffering meant walking home with my three drugs finally, my umbrella above my head, knowing I would be home soon, where I would be able to collapse and even work on the stupid idiotic fucking book review, because I was suffering and not depressed. Suffering meant I knew that crying would make me feel better, once I could stop, and that I knew that underneath the suffering I had a core of appreciation for the thunderstorm that had broken the hot spell this afternoon, even though it had drenched my poor bike and helmet that I'd left moored to a parking meter on the street. Underneath the suffering was psychic pain, which is an entity, but I can deal with an entity, it is better than the erosion created by depression, which is more absent than absence, depression is the oxygen-gulping aridness of the void, and it fills every part of you with the knowledge that nothing matters, the universe is as meaningless as it is infinite. So that there is no part of you left that can slither its way around and get its interest quickened by an idea or person or mind or glazed blue Moroccan tile. There is no room for beauty or Marx or charity or alternatives to war. There is only the ash that's left after a fire, after a long long rain.