Thursday, December 29, 2011

Miracle Diet Firms Ankles, Reduces Goiters

After I was diagnosed with DCIS, my mother began to offer a lot of advice about what to eat or not, mainly the latter, which was a topic she’d gotten a head start with due to her own cancer diagnosis last spring. This also hearkened back to when I was seven and she put me on the first of many diets, which I have long assumed was well meant: she wanted to make sure I wouldn’t have problems with my weight, but of course, dieting leads to nothing but problems with food and eating, and also leads like magic to weight gain, ultimately.

Thus began 10 years of one diet after another plus two varieties of giant binge: the “Farewell to Food,” which was the giant binge that preceded going a diet, when we ate everything we would never eat again, and then there was the giant binge that ended each diet. I don’t think we had a name for that one; we were too busy making a list of everything we were going to eat after the two or three or five days of cruel deprivation. I guess it was the “Hello to Food, and About Time” binge.

(“That was when you were living with your biological mother, of whom I have no knowledge, right?” my current mother asked when I told her I was about to mention the Farewell to Food on the Internet.)

It was astonishing to see 42 years disappear and to feel just like I did when I was seven and was denied a piece of birthday cake at a friend’s party. However, it was viscerally clear this time around that such advice came from a place of anxiety for my well-being, and I imagine it was the same back then, too.

In recent weeks, the information has rolled in, some seeming rather anecdotal in nature: I’m going to send you a link about this woman who stopped eating everything but pistachios, mint toothpaste, and buckwheat flour, and two tumors on her neck the size of basketballs shrank away completely in one week!

It was hard to know what to believe, and I was starting to feel a little miserable about the whole thing when I remembered that two can play at that game. It so happens I have a food theory or three up my own sleeve. I’ll see your “Don’t eat dairy” and raise you a “Don’t eat tofu.”

Even perfect strangers got in on the act. As I stood in the produce department at Rainbow one day loading a container I’d brought from home, a short, beautifully coiffed and dressed old lady at my elbow asked, incredulous, “Mushrooms?”  “Yes, indeed, mushrooms,” I confirmed.

“They’re the worst thing for your health,” she said darkly as she marched off, adding, “I’m a nutritionist.”

Fortunately my eating plan has long been an extremely healthy one with an extremely unhealthy one layered, perhaps larded, on top of it: grains, beans, fruits, veggies, nuts—and ice cream by the pint or two and Ruffles by the bag. So it wasn’t a matter of having to learn that substances made of unpronounceable chemicals aren’t even food, as Michael Pollan writes, but of the surgical removal of that top layer.

One unanticipated effect has been how much dish washing is now required. Say one decides to replace Pop Tarts with oatmeal and walks into the kitchen hungry for oatmeal, or at least prepared to eat it, but alas, there is the oatmeal pot, crusted with the same, in the sink along with the bowl, spoon, wooden spoon, and spatula. It works a lot better if everything is clean already.

Other than all the scrubbing, so far it’s been perfectly easy, largely thanks to the folks on who started out with a DCIS diagnosis and are now trying to decide what will be hardest on their young children, for their mother to die at home or in a hospice facility. I am a somewhat seasoned hospice volunteer at this point and yet can barely stand to read these stories, in part because they make me afraid for myself.

I’d thought this anxiety might bolster my discipline in regard to eating, but nah, it doesn’t work that way. As they say in group sessions for recovering alcoholics, “You can’t scare an alcoholic.” You also can’t sufficiently scare a smoker, nor a Ruffles aficionado, but I have found potent the idea of refraining from former favorites in honor of those who would be incredulous with joy if skipping ice cream was the only thing they had to do that they didn’t want to do.

Tuesday, December 27, 2011


The day after surgery, I felt perfectly fine when I woke up, but about noon I suddenly felt woozy, almost dizzy, headachy and fatigued. I got in bed feeling very chilled, but later felt quite warm and saw my face was all red. I assume this was the 2000 rads kicking in. (Lisa reported that David said no wonder I didn’t feel well—I’d just been “Fukushima’d.”) But by late afternoon, I felt better, just kind of strange and mildly headachy, and there hasn’t been another day with the more noticeable effects.

I’ve been drinking tons o’ water and eating plenty o’ veggies, and I had an appointment a couple of days after the lumpectomy with someone who specializes in lymph-moving massage, and a visit a couple of days later with another person who does a similar thing. Tom and I took a restorative walk in Golden Gate Park one afternoon.

I talked to Dr. P. on the phone a couple of days after the surgery and he told me that it went fine, that there was no sign of invasive cancer, and that he didn’t know the number of millimeters of clean (cancer-free) margin off the top of his head, but that it was plenty for the best score in that area of the Van Nuys recurrence prediction scale.

The X-ray after the initial excision did show that more tissue needed to be removed, so he did that on the spot. I asked if it is correct to say the tissue was examined for signs of invasive cells inside or outside the duct, and he explained that there can’t be invasive cells within the duct: if it’s inside the duct, it’s in situ, and if it’s outside the duct, it’s invasive, so they were looking for cells outside the duct and didn’t see any. However, the cells are the same in either case. It’s not a matter of different kinds of cells, but of location. Finally, he said it will be four to six months before full healing is done.

Christmas with Tom’s family in Sacramento was wonderful, as always, if devoid of hugs this year. The incision site doesn’t hurt at all if left to its own devices, but if it gets bumped or compressed—so far, I’m the only one who’s done this, when blowing my nose—the pain is excruciating, so it was a handshakes-only holiday, which I think was a bit more professional.

We had a spectacular dinner on Christmas Eve and opened gifts later that evening. Tom and I spent the night at Ann and Mac’s, and on Christmas Day, it was back to Paul and Eva’s to see what Santa had put in our stockings.

Yesterday I went to Rainbow and was utterly exhausted by the time I left the store, which was before starting a long day of cooking. I know someone who had a lumpectomy nearly a year ago followed by six weeks of external radiation, and she very recently said she still feels tired, but even if I’m tired for a year, I suppose I’ll have forgotten all about it 50 or so years from now.

A woman writing on said she felt very fatigued for three months after she had intraoperative radiation. This woman had IORT because she felt strongly that whole-breast radiation was too much treatment, but she’s going ahead with tamoxifen (though she says her medical oncologist is only “mildly” in favor of it), so I’m wondering if I’m making a mistake in not wanting to take tamoxifen.

I’m also still brooding over recurrence risk numbers and am paranoid I’ll be one of the people who persistently grows cancer back. When there is a recurrence after an initial diagnosis of DCIS, half the time it’s DCIS again and half the time it’s invasive cancer, though then you might have a mastectomy and radiation and/or chemotherapy and live on, sanguine good humor intact.

I’m continuing to visit the forums at frequently, which has been extremely helpful. There’s a section for various diagnoses, starting with ductal carcinoma in situ (DCIS, Stage 0 breast cancer, what I have), and moving on through the various stages to Stage 4, metastatic cancer.

 The last forum in this section is for people who have suspended treatment and are deciding on palliative care or making hospice arrangements, some leaving behind young children. Visiting here plunges me into a state of gloom and anxiety—there are people posting whose initial diagnosis was DCIS and who now are dying. It’s heartbreaking to read about women making ready to leave everything and everyone they love, and it’s also staggering how much bravery, acceptance and clarity shine through their words.

In just about the worst circumstances you can imagine, the focus is not so much on dying as on making the most of the days that remain.

David and Lisa, in a pretty naked grab for Friends of the Year, have been wonderful—calling before and after important events, spending lots of time on the phone with me. Carol Joy, who sent gorgeous pink carnations after the hysterectomy, sent another spectacular flower arrangement, and others have offered to bring over food or have sent bolstering notes. My sister offered to help as needed, and my mother, as always, has borne the brunt when it comes to hearing every detail. Such a kind mother and sister and such kind friends!

Tuesday, December 20, 2011

Lumpectomy, Hands Down

I’m home from my lumpectomy and intraoperative radiation (IORT)! Tom drove me to the hospital this morning in a City CarShare car. I felt kind of scared when I stepped out of the car, but Tom told me to remember all the people who love and care about me, and once I entered the building and was sucked onto the surgery conveyor belt, I felt perfectly calm and remained so.

At this place, you have your regular yearly mammogram on the first floor, your follow-up mammogram and biopsy on the second floor, and you report to the third floor for surgery. I hope not to find out what happens on the fourth floor.

I registered, sat in the waiting area, was shown to a room, changed into a gown, and had an IV successfully and painlessly placed on the first try by a nurse named Juanita, which has not necessarily been the case prior to other surgeries, so I appreciated her expertise.

Then there was yet another mammogram, this one part of “needle localization,” in which a needle is used to place a wire in the area where the tumor is so the surgeon knows exactly where to cut. (The mammogram is to help guide the needle to the right spot.) When the needle localization is complete, there’s a wire sticking out of the breast.

Then I walked down to the operating area, passing Surgeon Number Two on the way; I said hello to her. I sat in a room near the operating room for a while and was visited by a nurse or two, and then by my radiation oncologist, Dr. L, which was good, because I still hadn’t made up my mind about IORT.

I asked if the other major medical center here does IORT for DCIS and he said they do, but currently only as part of a study. I asked if my health insurance carrier had approved it, and he said they had, and about 20 minutes before surgery, I decided to go ahead. Dr. L. told me the dose of radiation would be 20 gray, formerly known as 2000 rads.

Surgeon Dr. P. came in briefly, looking very different in his scrubs. Besides the change of attire, he seemed much more relaxed and at ease than he does in his suit behind his big desk. Next was the anesthesiologist, who was very, very nice. He reminded me a little of the actor Geoffrey Rush.

Then I walked into the OR and hopped onto the table and had my limbs arranged. The anesthesiologist said he’d given me something that might feel a bit strange, and was about to give me something else. I didn’t feel the first thing at all, but certainly felt the next thing, very briefly, and then I woke up in a different room, just me and a lone woman by the side of the stretcher.

(IORT, by the way, employs plain old X-rays, and so can be delivered in a regular room, but a room other than the OR is used, for reasons unknown to me. I was told that once the applicator is in place, everyone but the patient leaves the room, and the anesthesiologist watches the patient on a monitor, and the IV line runs through a little opening at the bottom of the door in case the anesthesia needs to be adjusted.)

The woman who was there when I woke up told me she’s on a quest to choose a religion and is starting by reading the Bible, though she doesn’t think Christianity will end up being the thing for her. I told her about my hospice volunteering and she said she could never do that, which surprised me.

She wheeled me back to the room where the IV was placed earlier in the day, and I changed back into my clothes, hung out, and had water and juice and a few crackers, all of which tasted good, unlike after the hysterectomy, when everything, even water, tasted terrible. Tom picked me up about 6 p.m.

Food aside, I also feel much, much better than after the hysterectomy. There’s a big dressing over the incision, and I feel a bit tired and headachy, but there is really no pain to speak of. I took two Tylenol, just in case.

Today's lesson: If you get to choose between having a hysterectomy or a lumpectomy, have the lumpectomy.

Number Eleven?!

Today is surgery day and I am now in almost a full-fledged panic about IORT. Am I making a mistake? If Johns Hopkins doesn’t regard this as safe for patients, am I stupid for going ahead with it?

I think my dreams have been trying to cheer me up. In the dreamworld the other night, a parade passed by with a contingent carrying signs saying “BII.” I wondered if this was a group of bisexuals, but it turned out it was the Buoyant Beamers—people who make a practice of being happy and of smiling. I don’t know why their signs said BII.

When I met with my radiation oncologist, Dr. L., a week ago, I asked him if he’d used IORT for DCIS, and he said he had, but today it occurred to me that maybe I should find out how long they’ve been doing this, and how many DCIS patients have received this treatment to date.

Well, here’s the answer, fresh from the telephone: This medical center has been using IORT for DCIS for four months, and they’ve used it on 28 people with invasive cancer, and on 10 DCIS patients to date.

Which makes me Number 11! Yow.

Dr. L. is awfully nice. I asked him how late I can change my mind without him wringing my neck, and he said I have right up until the moment they put me under anesthesia. Very good answer.

If he’d said, “It’s too late to redo the treatment plan. Nothing is going to go wrong. Trust me!” or anything along those lines, I would probably have called off the entire thing, including the surgery.

He also said that if I’m still not sure once I arrive at the hospital, we should do conventional radiation and skip the IORT.

I'm thinking I probably will go ahead with the IORT.

But: number 11?!

Monday, December 19, 2011


Tomorrow is my lumpectomy for DCIS (Stage 0 breast cancer) plus IORT (intraoperative radiation therapy), and I’m still fretting about the latter. I gave Dr. L., my radiation oncologist, a call today, but he wasn’t around, so I spoke with the on-call physician, who was very kind and patient.

I mentioned a worrisome New York Times article I’d come upon regarding conventional external radiation versus the one-week, two-times-a-day course of treatment, which is considered to be equivalent to IORT, and the on-call physician said he could see why I was concerned, though he reiterated that I have pre-cancer, so any numbers that pertain to cancer should be even better in my case.

He agreed there is a 5% risk of having to have a mastectomy in the five years after having the short course of radiation and a 2.5% risk of the same with conventional radiation—that is, the risk of mastectomy appears to be doubled with the short course of radiation, but this may not have any effect on long-term survival one way or the other. 

He offered me three choices to consider:

—Conventional external radiation for several weeks.

—IORT as planned. People with invasive cancer would have a 95% chance that nothing else would ever happen; a person with DCIS should theoretically have even better odds.

—A hybrid: one could use the IORT at the time of surgery as the “boost” (precise treatment of tumor bed) that typically comes at the end of a course of external radiation, and 4-6 weeks after the lumpectomy, have a course of external radiation shorter than the conventional course.

I also spoke with my surgeon, Dr. P., who said we don’t have 10- or 15-year data on DCIS, but we do have long data for surgery plus the short course of radiation treatment, which is similar to IORT, and that data shows a 4% chance of recurrence over 10 years, which is a fairly small risk.

It has been a long and not very fun day of Googling.

Sunday, December 18, 2011

The Ultimate Fact

It has been quiet at work as we approach the end of the year, which is fortunate. I don’t think I’d have time to be very busy at work and also have cancer, or even pre-cancer. Besides actual appointments, you have to make a lot of phone calls and spend a lot of time on Google.

Last night, Venkata treated me to dinner at Dosa on Valencia St. When we got there, they said there were no tables, but Venkata said, “Wait here,” and returned to say we were all set. I have no idea what he did, but I was agog with admiration, as my answer to “I’m afraid we’re all booked” would have been, “Oh, OK.”

I’ve been fretting a bit about the upcoming radiation treatment, and in particular wondering if going with intraoperative radiation therapy (IORT) is foolish, given that it hasn’t been studied with DCIS. Johns Hopkins does not offer it, for what it’s worth. Nor does UCSF, except as part of a clinical trial.

Post surgery, I will not have to have any other radiation, unless the pathology report finds actual invasive cancer cells. Also, if they find that an insufficient margin of healthy cells was left around the tumor, they would do a second surgery and I’d then have three weeks of external radiation, five days a week.

Side effects of radiation treatment can include redness, rash, itching, damage to skin and blistering. In some cases, a keloid scar can form. However, IORT side effects can be less, because treatment is very localized and not traveling through flesh to get to where the tumor is. Dr. L., my radiation oncologist, said it’s like a sunburn inside the breast. There can be soreness for 4-8 weeks, and redness for a couple of days.

However, this will be a low dose of radiation and shouldn’t cause any damage to heart or lungs, etc.

It has also lately occurred to me that if this doesn't prove to be Stage 0 cancer, it’s not like it would then be Stage 4 metastatic cancer—there’s no lump. I reckon that if it's actual invasive cancer, it might be Stage 1, still eminently treatable.

My meditation practice is continuing to help tremendously, certainly the actual periods of sitting in meditation, but even more so what carries into the rest of the day, the now-ingrained habit of being aware of particulars moment by moment: putting water into pot, opening box of teabags, sound of phone ringing. It helps to narrate these things silently to myself.

As my teacher Howard Cohn says, any moment we are attending to the raw data of cognition—what we can see, hear, feel, smell, taste—is a moment we cannot be lost in a story about the imagined past or future. Suzuki Roshi is getting at the same thing when he says, in Zen Mind, Beginner’s Mind, “When you are sitting in the middle of your own problem, which is more real to you: your problem or you yourself? The awareness that you are here, right now, is the ultimate fact.”

Several weeks before my first mammogram in October, I ran into a friend who mentioned that his wife had recently been diagnosed with early stage breast cancer, and that he had accompanied her to interview surgeons, which is why, upon being diagnosed, I shot out of the door to interview surgeons.

It occurred to me that it might be helpful to speak with my friend’s wife, if she was willing, and learn a bit more about her experience with the whole thing. One thing I was eager to ask her was how many surgeons she met with. Had I met with enough of them, or should you really see five or ten?

My friend’s wife said she’d be happy to talk with me, and when we spoke recently, she readily shared the number of surgeons she interviewed: one. Someone told her, “Go to this surgeon,” and that was that.

I don’t know if I completely misunderstood my friend or what, but I’m glad I did meet with more than one surgeon. Getting the recommendations and making and keeping the appointments added some time and stress to the whole process (especially Surgeon Number Two in the podiatry clinic!), but it was valuable to hear the different perspectives and to have some sense of making a choice.

Tuesday, December 13, 2011

If You Can Hear Me, Stand on Your Head and Move Your Legs in a Graceful Undulating Motion

Today it was off to meet with radiation oncologist Dr. L., who proved to be the chairman of that department. Radiation oncology is the only thing located in the basement of the building, so when you push the down button for the elevator, everyone knows you have cancer and you feel a little gloomy.

Dr. L. was really great, as patient as could be, not one bit frightened by my clipboard and reportorial air. He explained something I hadn’t yet grasped in all this talk of stages and grades: the fastest-growing DCIS grows more slowly than the slowest-growing invasive cancer. That is, on a continuum, you've got DCIS Grade 1, then 2, then 3, then invasive cancer Grade 1, then 2, etc.

As previously mentioned, the lower the grade, the more normal the cell, but there is actually something good about high-grade DCIS: while it’s more likely to become invasive cancer (that’s not the good part), it tends to grow in a continuous pattern within the duct and be localized within the breast, so it can be the easiest to contain.

You’d be surprised how many people with DCIS immediately opt for a double mastectomy. I was scratching my head over this at first, but now understand there are several good reasons for it: a person might want to avoid radiation, or might have such a large area of DCIS that a lumpectomy is not feasible, or might have a strong family history of breast cancer, and/or might feel anything is worth it to have the lowest possible risk of recurrence. I suspect it also depends on what doctor or hospital you visit, or what area of the country you live in.

No one has mentioned anything other than lumpectomy in my case. As for radiation, my choices until recently would have been treatment once a day for five or six weeks, or a shortened course of radiation twice a day for one week, but with the new thing, intraoperative radiation therapy (IORT), there is just one dose of radiation and it is applied at the time of surgery. This has not been explicitly studied with DCIS, but it has been proven to be as effective as either of the other two options when it comes to early stage breast cancer; e.g., Stage 1.

Normally radiation treatment doesn’t start until after the lumpectomy incision has healed up, which can potentially give lingering cancer cells a chance to start growing again, which can’t happen with IORT. That is, it avoids “temporal miss.” Also, with IORT, they can be sure they’re aiming the radiation at the exact right spot: no “geographic miss.” I went to to read up on IORT and read that another benefit is the “richly vascularized” treatment bed, which means “they’ll be putting the radiation right into a bleeding hole.”

Like Surgeon Number Two, Dr. L. considers DCIS to be pre-cancer, which on one hand is comforting, but on the other, if I have to schlep all over town interviewing surgeons and radiation oncologists, have surgery, be treated with radiation, and potentially take tamoxifen for five years—if I have to have a Tour of Cancerland—I'd kind of just as soon it would be called cancer. Also, what does this mean for the seemliness of going around referring to myself as a “survivor” later?

Dr. L. put my chance of recurrence after lumpectomy and IORT at 1.7%, though I’m starting to realize something about this thicket of numbers: they are meaningless without knowing what time period is referred to. Also, they’re probably kind of meaningless, period, as no two situations are identical, but I will try to remember to inquire about the time period from now on, anyway.

In sum, I am going to have a lumpectomy and IORT next week with Surgeon Number Three and Radiation Oncologist Number One. Dr. P., my surgeon, says that right after he does the lumpectomy, they will X-ray to make sure the margin appears to be sufficient, so he can take out more tissue right on the spot, if necessary.

A nurse telephoned to do pre-registration for the surgery and asked who should make medical decisions for me if I become unable to do so. I gave her my sister’s name and sent my sister an email letting her know that, generally speaking, I’m in favor of continuing to live, but if I’m a vegetable with very little hope of regaining consciousness, then they should take me off life support, and if I’m breathing but non-responsive, I might be like that guy in that movie who was fully alert but paralyzed—one of my worst fears—so she should make sure to have them try the “blink your eye once for yes, twice for no” thing before they pull the plug.

Monday, December 12, 2011

Secrets of the Afterlife Now Revealed Here!

Oh, sorry, make that not revealed here, for the main and simple reason, as Booth Tarkington's Penrod would have said, that I don't know any.

This past Saturday I had a very nice moment, sitting in a sunny spot in the laundromat, when I looked up from The New Yorker and realized it had been quite a number of minutes since I’d thought about having breast cancer.

Today I met with Surgeon Number Three, Dr. P. I liked him and felt that he liked me. He does nothing but surgery for cancer, 75 to 80 percent of which is for breast cancer. Before I could ask about the new thing where they do one blast of radiation during surgery, he brought it up himself, and when I asked what radiation oncologist he prefers to work with, he named the very one I already have an appointment with tomorrow, a pleasing confluence of factors.

Dr. P. explained the Van Nuys scale, which is used to predict DCIS recurrence with a numerical score of one to three, three being worst, in four categories: age at time of diagnosis, size of the tumor (stage), how fast it’s growing (grade), and if clean surgical margins are achieved—X number of millimeters showing no trace of malignant cells at the edge of the tissue surgically removed.

I’m stuck with a three for age because I’m six months from turning 50—the younger you are, the worse, because you have that much more estrogen and that many more years in which to have a recurrence—and a three for grade, but I get a one for stage and, if clean surgical margins are achieved, which they dad-blasted had better be, I will get a one there, giving me a total score of eight. Which I’m going to secretly think of as a score of seven, because if I’d had the screening mammogram just six months later, I would have been 50 when I got the DCIS diagnosis.

Dr. P. thinks my chance of recurrence would be 2% with mastectomy (removal of the entire breast), 4% with lumpectomy and radiation, and 10% or less with lumpectomy only. He said survival rate remains the same across all three options, which is because having a recurrence isn’t the same thing as dying: You can have a recurrence, or multiple recurrences, but continue to live on, with additional treatment.

Whereas a standard lumpectomy can be done using local anesthesia, surgery with intraoperative radiation therapy (IORT) would require general anesthesia, and would take about 90 minutes. The IORT adds about 40 minutes to the surgery.

Dr. P. said 75% of recurrences will be close to the original tumor location, and 25% will be elsewhere in same breast, so IORT should reduce the chance of recurrence by 75%. He added that tamoxifen further reduces recurrence risk by a third, but if risk of recurrence is only 4 or 6 percent to begin with, maybe it’s not worth it to take tamoxifen, another thing I was happy to hear.

Before I left, he performed a brief exam and asked, “Do you work out?”

“Why? Does it seem like I do, or like I need to?”

He said it seems like I do, because my heart rate was low, particularly at a moment when most people are nervous. He said he thinks I can withstand a surgery of any length and said it will be his pleasure to work with me, or to assist in any way he can if I end up choosing another surgeon.

When I first found out I had any form of breast cancer, of course I regarded it as a death sentence. I’ve always assumed I would die of some kind of cancer because all four of my grandparents did, two at fairly advanced ages, but the other two in their 50s.

Dying at 49 would be rather untimely, but every day babies and children die, by which standard 49 would be fairly luxurious, and it is, after all, something that happens to us all sooner or later. It’s not a special punishment reserved for the hapless few.

I thought of my current hospice visitee, a lovely man of nearly 90 with lung cancer. His room is bursting with candy and flowers brought by friends, and stacked with magazines and CDs. His bulletin board is plastered with colorful greeting cards and a couple of photos of himself decades ago with friends, quite a handsome young man.

He has asked me once or twice, very casually, what I think happens after we die, but most of our conversations are about books, music, movies, film stars of now and yesteryear, food, traveling, our families, his friends and past partners. A former language arts teacher, he is a pleasure to be with.

I have concluded that if he can do it, not to mention all my other former hospice visitees, so can I. If absolutely necessary.

As for what happens after we die, I have no idea but I hope the answer is: nothing whatsoever.

Friday, December 09, 2011

The Strange Saga of Room 108

Today was difficult. I met with Surgeon Number Two at a hospital close enough to walk to. After a stroll down Valencia St. chomping on a carrot—life was good—I was pleased to see Room 108 just inside the hospital’s main entrance. But then I noticed that it said something about administration on the door, and someone inside the room explained that I wanted the other Room 108, and directed me to find the elevators and go up a floor.

Up a floor, I was instructed to go down a floor. Down a floor, I was instructed to go toward the back of the hospital. In the back of the hospital, I was told the office I wanted was around the corner, but all that was to be seen there was a sports medicine office. Fortunately, on the wall to my left was a big display listing every provider’s name. Unfortunately, my person wasn’t listed. I was going to be late. I called the doctor’s office and got voice mail.

A passing nurse took pity on me and said perhaps I wanted a certain group of doctors on the fifth floor. She escorted me up there, but of course that was not the place. I returned to the first floor, by now stressed and frustrated to the point of tears. I consulted a not very friendly security guard and was directed to a room beyond the sports medicine office. On the door it said something like “Podiatry Clinic.” And that was where the breast surgeon was located, of course.

In the exam room, wearing a gown, it hit me that I have fallen into a machine where I’ll be trapped for five years, and then I really cried. I felt absolutely, wholeheartedly sorry for myself. Which is fine. If it’s good that I can feel bad about someone else’s problems, which I can, then it’s good that I can feel bad about my own problems.

On top of everything else, Dr. A. proved to be suffering from multiple personality disorder: she came in radiating a soothing kindness and sympathy, but soon turned much more businesslike, looking frankly at her watch, and she tried to snatch my list of questions out of my hand, saying it might be faster if she just read them to herself. Needless to say, she did not succeed in that. Her bedside manner could not have contrasted more with Dr. R.’s.

Dr. A.’s view is that DCIS is pre-cancer, and she explained that DCIS does not start as Grade 1 and progress to Grade 2 and then 3. It starts out as whatever grade it is and stays that way, though it’s possible to have a mixture of grades. I’d felt a bit rueful about having gone two years without a mammogram, so this made me feel better—a mammogram last year would have found either nothing or the same thing I have now, Grade 3 DCIS, Stage 0 breast cancer.

She also told me that DCIS is almost never hormone negative. It almost always has receptors for estrogen and/or progesterone. While only 30 percent of DCIS goes on to become invasive cancer, they can’t tell which is which, so they have to treat it all. Like Dr. R., she can do surgery before January 1, though she says it will be better to wait until the bruising from the biopsy has abated. The biopsy area is now flaming pink and has been slightly painful, but nothing major.

When I received my initial diagnosis from the nurse educator, she mentioned that I might receive hormonal treatment for five years. For someone who is pre-menopausal (or who neglected to have her ovaries removed when she had the world’s best opportunity to do so), this typically means tamoxifen. Tamoxifen works by blocking the estrogen receptors in the breasts—the ovaries are faithfully producing estrogen, but it isn’t getting to the receptors. This is the part I’m most concerned about. I have had awful reactions to brief courses of hormones in the past, and it also seems as if it would be quite a psychological weight: five years of “Here I am, the sad cancer patient, taking her daily pill.”

Of course, I could try to take my daily pill with a gay flourish, but I was relieved when Dr. A. said it will be my decision whether to take tamoxifen or not based on risks and benefits.

As for radiation, all are agreed it is needed, but it turns out there is a newfangled way of delivering it: intraoperative radiation therapy, or IORT. Dr. A. said that if I want to consider this option, I should go have a word with radiation oncologist Dr. L.

My next moves, therefore, will be to see Surgeon Number Three on Monday, and Radiation Oncologist Number One on Tuesday. No messing here, as my Irish friend Frank says.

Thursday, December 08, 2011

You Are Now Entering Cancerland. Next Services 457 Miles.

I spent some of today reading about topics formerly unheard of or of little interest, now much more captivating: radiation treatment, ductal carcinoma in situ (DCIS), recurrence risk. I called the nurse educator at SFMC to ask for her help interpreting some things Dr. R. said. I think such conversations are probably a little tricky for her, as she is herself not a doctor, and probably also does not want to appear to contradict any doctor, no matter what goofy thing the doctor has said.

For instance, Dr. R. mentioned something about a recurrence risk of 30-40%, regarding which the nurse educator said politely that perhaps he meant with surgery alone. For my diagnosis, this figure does not appear to be accurate.

I also finally understand the difference between cancer stages and grades, which I couldn’t grasp even when my mother had cancer earlier this year. Of course, she didn’t explain it quite as clearly as I’m about to. Stage has to do with the extent of the cancer: the size of the tumor, if it’s spread, whether the cancer is invasive or not. DCIS is always Stage 0. Grade, as Dr. R. correctly said, has to do with how abnormal the cancer cells look under a microscope and therefore how quickly they are likely to spread.

Beyond that, there are many other aspects of a breast cancer diagnosis, including whether the tumor has receptors for estrogen and/or progesterone, meaning that treatment might include blocking the effects of those hormones. Mine has both kinds of receptors. I also learned that the word “tumor” is used even if there’s not a lump as such. I have no lump (and don’t want one) and there is nothing that could be felt by the human hand even if one knew just where to go, but it’s still called a tumor, meaning a growth of tissue.

When I had the hysterectomy in late October, to treat symptoms that weren’t in themselves troublesome but that could potentially develop over time into uterine cancer, I didn’t have my ovaries removed. I figured it would be good to let them do their thing—make estrogen—until they stop on their own, which can’t be long off, anyway, but what I should have done—what was I thinking?—is divine that less than six weeks later, I’d be diagnosed with hormone-positive breast cancer and have them removed with the rest. Oh, well, I’ll definitely do it the next time I have my uterus removed.

So far, my life looks about the same, but things feel quite different, as if a sheet of glass has slid between me and the rest of the world. I can see everything and everyone just as clearly as before, but I’m in some other place where I have to travel alone, where no one can truly accompany me. It’s a little lonely at moments. Who knows now when I’ll get to make that trip to see my family?

But I was reflecting today that things are as they are, and one way things are is that I’m quite alive, with every likelihood of remaining so for the time being. Even if I knew I was going to die in two weeks, would I want to spend all of those final moments thinking, “Oh, my god, I’ll be dead in two weeks”?

My meditation practice is helping immensely. The night of the day I was diagnosed, I sat for 45 minutes, even though it was already 11:30 p.m., in gratitude for all I have received. I love knowing that whenever I’m meditating, there is someone elsewhere doing the same, and that whatever feeling or experience I’m having, I’m not alone. During the time that I’m sitting, if someone in another city or country says, “I know there is someone else meditating right now,” I have made that true.

As shocking as this seems at moments, it also strikes me as considerably less dire than when my mother was diagnosed with cancer. Maybe it’s just easier when it’s you having the problem instead of your mother having it. I guess I’m more scared of her dying than I am of myself dying, and when it seemed that could possibly be on the horizon, I had to do a lot of interior work which helped then and might be helping again now, at this time of strange parallels.

As a friend said, “I know you love your mother, but just because she had cancer and a hysterectomy doesn’t mean you have to have cancer and a hysterectomy.” Too late.

Wednesday, December 07, 2011

Two Things I Should Not Have Said Where the Universe Could Hear Me

One: “Great that the hysterectomy is over—now I won’t have to go to the doctor all the time!”

Two: “Boy, it’s a pain getting across town to SFMC—sure hope I never have to go there again!”

First, the good news. The stereotactic core needle biopsy on Monday was not a big deal. Basically, your breast dangles through a hole in a table and they compress it, apply a soupçon of local anesthetic, and extract some samples with a needle. I asked beforehand if the compression would be the same as when I had my recent (extremely painful) mammograms and the nurse said it would be. Except that it would be for forty straight minutes.

If it had actually been like that, it would have been extraordinarily difficult to withstand, but in fact, it was very mild compression, barely noticeable. The whole thing seemed to be over in twenty minutes. It didn't hurt. The nurse and doctor were extremely kind. Really, the worst part was having to lie still on my stomach with my head turned to one side, which produced a slight kink in the neck, soon forgotten.

I was sent home with a small bandage over the hole where the needle had entered, after making an appointment to return tomorrow to hear the results. I asked if the findings could be communicated over the phone and was told this is possible if strongly desired, but that they prefer to discuss in person.

Yesterday I arrived home after business hours to find a message on my answering machine (yes, I still have one) from my ob/gyn, who said, “Linda! Dr. M.! Got your results! Give me a call!” Surely, I reasoned, no one uses such a jaunty tone of voice to tell someone she has cancer, ergo I did not have cancer, ergo there was no need to schlep across town to SFMC.

This morning, I called SFMC and said it sounded like the news was going to be good, though I understood it might not be, so could they just tell me on the phone? And in no time, a nurse educator at SFMC called me back and told me I have cancer.

My first thought was, “Really?” and my second was, “Damn that Dr. M.” But I suppose it would have made for a sleepless night if she’d left a grave and gloomy-sounding message. It probably is better to sound cheerful in that situation.

So. I have ductal carcinoma in situ (DCIS), which is Stage 0 breast cancer, considered by some not even to be cancer, but rather a pre-cancer. “Ductal” means the malignant cells are in the ducts rather than the lobules. Lobules are where milk is produced. Ducts are what the milk travels through to get to the nipple. “In situ” means the cancer appears to be confined to the ducts and appears not to have broken through the duct walls. But this will not be certain (insofar as anything in medicine is certain, which is that it's not) until the tissue is removed and tested.

The nurse educator said I would have surgery, radiation treatment, and maybe hormonal treatment, but not chemotherapy.

As it happens, I lately bumped into a friend who told me that his wife had been diagnosed with early stage breast cancer, and that he had accompanied her to “interview surgeons,” which suggested that to be my next task, so I got the names of three surgeons from the nurse educator. I asked if I should still come in, but she said we’d just covered pretty much everything we would have gone over in person, except that they would have given me some pamphlets, which she said she could mail. I asked her to send them—one doesn't always want to get the pamphlets, but I had the feeling these might be particularly riveting.

Then I spoke with my ob/gyn and told her I'd gotten the news. She called me “my dear” and said she was pissed off on my behalf, as she knew I was hoping the whole medical era was over. She recommended a surgeon, as well, one of the three mentioned by the nurse educator, and, not wasting any time, though no one said there was a big rush, I typed up as many questions as I could think of—here’s where being a former QA person comes in handy—grabbed my clipboard and went to see the first one this afternoon. Turns out that whereas you normally can’t get any kind of medical appointment for the same day, the seas pretty much part as soon as you mention cancer.

Dr. R. was absolutely lovely, extremely calm and patient. I’d made it a point to have the hysterectomy during 2011, because when 2012 rolls around, I’ll have a $2000 deductible. Little did I know I’d also have to squeeze in a lumpectomy! Dr. R. assured me that he could do the surgery before the first of January, and explained about cancer coming in three exciting grades.

Grade 1 grows most slowly. The cancer cells are “trying to look like normal cells.” Grade 3 features “wild-looking cells” and grows the fastest. It has the highest risk of recurrence, and of becoming invasive cancer. Grade 2 is in between.

He told me my cancer is high grade.

“Does that mean it’s the best or the worst?”

Alas, here highest means worst: my DCIS is grade 3.

And there you have it. We shall see what Surgeon Number Two has to say on Friday.

Sunday, November 27, 2011

86ed from Steroids

I was supposed to go to Ypsilanti, MI, for a tasty vegetarian, almost-vegan Thanksgiving dinner with my mother, father and sister, but, because of the hysterectomy, still am sleeping flat on my back all night every night, which normally would be impossible, but somehow the body cooperates when necessary. But that’s on my own bed, which is reminiscent of a cement sidewalk in firmness.

Sleeping on my parents’ guest cot requires a change of position about every 15 minutes if one is to be able to rise to her feet the following morning. My mother very kindly offered up her own bed, but that seemed like quite an imposition. I don’t know about her, but after about four days of someone else sleeping in my accustomed spot while I slept on the guest bed, I might get crabby.

I was also a little worried about schlepping my suitcase from here to there. I wasn’t supposed to lift more than 20 pounds, and while the suitcase has wheels, I could only too readily picture someone in the airport shrieking, “Miss! Your suitcase is falling,” me instinctively grabbing for it, and hearing a horrible ripping sound.

Nonetheless, I hated the thought of missing my semi-annual trip and only with difficulty decided to postpone. Once I did, my father said he’d been about to call and say not to come: “It sounds like you’re swimming upstream right now.” Mom had said, just once, that Thanksgiving wouldn’t be quite the same with just three, and I very much wanted to be there, but appreciated my father seconding my decision. It made me feel more at peace about the whole thing, and I figured I could reschedule just as soon as I felt better, except that I always book at least six weeks in advance so I can get a seat that is on the left side of the aisle as you look toward the cockpit.

That way the arm I make flamboyant gestures with and turn book pages with can extend into the aisle.

Of course, about one minute after I canceled my trip, I felt well enough to go.

But it all came out fine. Instead I went to Sacramento with Tom for dinner at Steve and Julie’s, which was magnificent. Serious overeating, a big congenial crowd. In the evening, Tom went off with his girlfriend to help with a project at her place, and I stayed overnight at Steve and Julie’s, and then we three went to visit Ann and Mac the next day. I took the train home in the afternoon.

I am back on my bike now and, riding home from work one day, arrived at the red light on Townsend at the Embarcadero. There was a UPS truck ahead of me, and I saw an apparently deranged man step off the curb on the left side of the street and approach the UPS driver and start to tell him, through the driver's window, about when he used to be a UPS driver. “Great,” I thought. “Now we’ll be sitting here for ten minutes waiting for this fellow to move along.”

Another cyclist rolled up and stopped to my right. The light turned green. The UPS truck didn’t move. I thought I’d help the driver out by ringing my bell so he could tell the crazy guy, “Oh, sorry. Gotta go!” So I rang my bell several times just as the truck moved on. The cyclist to my right told me, in just this side of a withering tone, “There was a pedestrian in the crosswalk.”

Sure enough, the mental health gentleman had reached the far side of the street—he hadn’t delayed the UPS truck in the slightest—and he said to me, in what was definitely a withering tone, “No more steroids for you!”

Wednesday, November 23, 2011

Biopsy Dukkha

Hey, this is post number 500!

Dr. M. says lying on my stomach won't do any harm, but it might be uncomfortable. She suggested scheduling the biopsy for a couple of weeks out, so it will be December 5.

Toward the end of September, I went to Eugene Cash’s Sunday night sitting group, as was my weekly habit, and in his talk, he mentioned something that caused me to remember that it had been ten years to the day since I'd begun to meditate daily (not since I began to meditate, period, which was 21 years ago). I missed just one day in those ten years, by accident.

It was an Easter. Tom and I went to Sacramento on the train, so my schedule was not per usual, and I kept thinking, “When I get home, I need to meditate.” When I woke up the next morning not having done so, there was a slightly queasy feeling: You may be able to do this or that today, but you can do nothing whatsoever yesterday.

I went up to Eugene at the end of the evening to tell him about my anniversary. That Sunday night group is vast, and many people must want his attention, so this was the very first time I had ever approached him there, though on a handful of retreats, he has been one of the teachers I interviewed with. He’s agreeably irreverent, very well versed in his subject, and very funny. He often makes me laugh.

I told him about my ten years of sitting (almost) every day and he responded warmly. Looking directly at him, I realized I’d never fully appreciated what lovely caramel-colored eyes he has.

And that was his last Sunday night with us, because the following Saturday, on the Buddhist Bike Pilgrimage, which he had told us he was very excited to go on, he crashed and suffered a traumatic brain injury, and we have not seen him since.

I found out about his accident when I got an email directing me to his Caring Bridge website, a place where people undergoing medical treatment can post updates or have friends do so, so they don’t have to send 500 emails or make 500 phone calls. “Uh oh,” I thought, “Why does Eugene need a Caring Bridge website?”

One of his visitors posted this, which I saved and have thought of often:

“I have also benefited from the dukkha of bike crash recovery and know the long road.”

“Dukkha” means “suffering” or “stress.” It’s considered in Buddhism to be one of the three characteristics of life, but it is certainly not considered to be all of life, despite how frequently one encounters that glib misstatement.

I liked very much the idea of benefiting from dukkha, because we normally think of benefiting from what is agreeable, and we do benefit when we enjoy delightful activities, feelings, sights, sounds and tastes. We also tend to cling to those things, and to assume that if what’s pleasant is good, what’s unpleasant must be bad, so we naturally push away anxiety, pain, anger and sorrow.

I liked this person’s reminder that we also benefit from what is difficult, if we turn toward it and experience it directly. We might also use what’s hard as a starting point for wise reflection, which is not precisely the same as endless obsessing, or telling ourselves once again the story that always ends the very same way: we aren’t good enough, and things definitely won’t work out.

Friday, November 18, 2011

Yes, I Am Sleeping

Yesterday I went back to SFMC (Super Fantastic Medical Center; not its real name) for my mammogram recheck. It would have been sooner, but I had to wait until I’d recuperated a bit from the hysterectomy. The original mammogram was my first at this place and by far the most painful I’ve ever had, so you can imagine my pleasure when I saw the same technician coming for me yesterday. Nice woman, but what a grip on the controls!

The recheck did prove to be quite a trying experience, in terms of pain and emotional upset. I also became nauseous partway through and had to lie down. The recheck involved a variety of mammograms and an ultrasound, and before I left, I was told that two geographical features had been determined by ultrasound to be benign fluid-filled cysts, but that I had a cluster of calcifications in my left breast and would need a biopsy.

Calcifications can form in many places in our bodies and typically are perfectly harmless, but certain configurations are cause for concern. I was told that there was a 22 percent chance my personal cluster of calcifications would prove to be cancer. It was also explained that the biopsy would involve lying face down for 40 minutes or so on a special table—“special table” sounds better than “weird table”—with the afflicted part dangling through a hole.

However, I can’t schedule this quite yet, because post hysterectomy, the only position I can sleep in is flat on my back. It seems to me that lying on my stomach is out, with or without anything dangling through a hole, but I will consult Dr. M. on that point.

Googling has of course ensued, by me and my mother. She sent me a page on calcifications I couldn’t quite make sense of.

She forebore to call me an idiot, under the circumstances—in case I’m about to die—but sent an email saying:

I thought the radiology page explained the calcification patterns clearly, since I had no idea what they were an hour ago.

Pat on head,


I wrote back that part of the problem was that I didn’t know which particular pattern of calcifications I had.

She replied:

Maybe they don't either, exactly, hence the biopsy. 

A friendly tickle in the ribs,



Ha—my pamphlet here says that calcifications can be a “very early” sign of breast cancer. OK, good.

A manly cuff on the shoulder,


When one has calcifications, it helps to have a funny mother.

It also helps to have an overly simple philosophy of life and death.

A few months ago, I was at my Sunday night meditation group and had occasion to mention on a group level that I was feeling worried, though it was embarrassing to say so, about my money: would there be enough to last the rest of my life? What if I ran out? The guest teacher that night, Anna Douglas, asked me, “Do you have everything you need right now?”

I could readily say I did, which was actually comforting, and then I got to thinking that, by definition, we always have what we need to sustain our lives—because when we don’t, we die. 

However, we (at least I think this is true) will never know we are dead, because we won’t be there to know it. I don’t think there will be a moment where I can accurately say, “Dad blast it, I’m dead as a doornail.” Ergo, we’re always alive, at least from our own point of view, and we always have everything we need.

Wednesday, November 02, 2011

The Perfect Sickroom Cat

The surgery began at 2, concluded at 4, and Tom fetched me home in a CarShare car about 6:15 that same evening. Rather amazing. In the operating room, Carole King was playing, and I grumbled, “I forgot to bring my Metallica CD.” Dr. M. said, “You don’t mind if we listen to Carole King, do you?” I said, “If it makes you calm, go right ahead,” and behind me, I could hear someone, perhaps the anesthesiologist, singing along.

I had the driest mouth of my life during the short car ride home. Tom saw me inside and unlaced and removed my shoes, which I could no longer reach, way down there on the floor. For the next 36 hours, I lay in bed a lot and took either Vicodin or three Advil every three hours, and then figured out that the Vicodin itself was probably the main thing making me feel terrible. I also was taking this, that and the other hippie supplement, based on advice from various sources, and decided most of that was also a mistake; some of them made my head swim.

One thing I did right: Going to the library in the days before surgery and bringing home a big stack of memoirs and novels. It’s ended up being rather pleasant, having such a short to-do list for each day. All I really have to do is a tiny amount of stretching, meditate for a token five minutes (lying down if necessary), feed Hammett, and clean his cat box. He has proven to be the perfect sickroom cat, sitting quietly at the periphery of the room with a grave expression on his face, until I ease myself into bed, when he slithers in between my arm and my body and goes to  sleep. He’s also refrained from walking on my incisions.

Besides the few required activities, I’ve been reading, being on the computer some, talking to people on the phone. My mother has been very helpful, having had nearly the same surgery in April. Carol Joy sent a big bunch of carnations, which smell and look wonderful. David and Lisa called from Seattle both before and after surgery day, and sent a card.

As early as two days after surgery, I went outside and slowly hobbled a few blocks with Tom. Yesterday evening I went on a particularly nice walk in the balmy early evening, a splendid breeze blowing. This walk took me past every apartment I’ve lived in since 1983, and also past the Bi-Rite Creamery on 18th Street, which for the first time didn’t have a line out the door and nearly to the end of the block. I’ve always thought that it must be very good ice cream, but not worth standing in that kind of line, and I don’t think I ever will stand in that line, but since I could walk right in (about 5:30 on a Tuesday, if you want to know the magic time of week), I did, and got a scoop of ice cream, and it was actually the best ice cream I’ve ever had, the most intensely rich and flavorful.

I got to thinking that there are those who live in this neighborhood and those (very, very many) who visit and spend money, and it is largely because of the latter that we have such an incredible profusion of wonderful places to eat and drink, and for the first time, I felt grateful to them rather than vaguely resentful.

As for Anthrax, I’ve completed listening to the samples on Amazon and plan to obtain seven of their 10 studio albums in electronic form, plus a few songs from the remaining three. It’s surprising that their music is so consistently enjoyable given the extreme amount of personnel churn they’ve had. Wikipedia has a nice bar chart showing the comings and goings.

Tuesday, November 01, 2011

I'll Take Two (Laparoscopic Supracervical Hysterectomies)!

I’m still here!

Today I set myself a research project: to gain familiarity with the oeuvre of the band Anthrax, one of the “Big Four” of American metal, until today completely unheard by me. After I receive Megadeth’s latest, released yesterday, I’ll have every one of their studio albums, and I have every one of Metallica’s studio albums. (You might like to know that Metallica has nine studio albums; Anthrax, 10; Slayer, 11; and Megadeth—the winner!—has 13.) Odd that I had managed to so completely miss Anthrax.

It turns out that Anthrax is fantastic! I’m almost thinking they will end up being my favorite band of the group. Judging from their cover art, they don’t take themselves particularly seriously, and, of the four, they sound most like a hair band. I hear a little Rob Zombie, too, or perhaps it’s vice versa.

I’ve also been listening to Apple, Mother Love Bone’s one and only album, which came out just after lead singer Andy Wood had died of a drug overdose, and also to the album then made by his friends in tribute, Temple of the Dog.

Various things that have happened since June 15: A visit or two to Carol Joy in Novato; several lunches at Mehfil with my co-worker and now friend, Venkata; Tuesday night meditating with Howie and Sunday night meditating with Eugene Cash; five trillion visits to the dentist/endodontist/oral surgeon; a move to a new floor at work.

Oh, here’s a highlight: On July 21, I saw Soundgarden! They were here at the Civic Center auditorium. The sound wasn’t great, and I thought the place was almost alarmingly understaffed, but I was in the very same room as Chris Cornell—the only person on this earth who really understands my problems, meaning that everything he touches is beautiful, that he was at times endearingly dorky when he spoke from the stage, that he clearly knows all about sorrow and loss. When I feel sad, I often listen to his music, either his solo CDs or Audioslave. It doesn’t cheer me up, but it reminds me I’m not alone.

On a splendid warm night in July, Tom’s mother, Ann, treated us to a lovely party in Sacramento celebrating several birthdays. Tom and I and his girlfriend drove from San Francisco together in a CarShare car.

After having taken a break from hospice volunteering while my own mother was ill, I have started again, now visiting a nice man who used to be a teacher.

At work, the particular piece of software I work with is being retired, and the retirement is moving ahead quickly.

We were advised that “when the music stops, there won’t be chairs for everyone.” My boss may as well have said, “Linda, after 13 years in which the world has changed completely, you will lose your job in the next months or year. You will not have health insurance. You will never get another job. You will end up starving to death on the streets.”

My company is also changing its “approach” to health care coverage so that it will cost employees much, much more starting next year.

I considered a health situation whose symptoms themselves didn’t really bother me (but which others might not enjoy reading about), the management of which required an endless stream of office visits, ultrasounds, biopsies, and three surgeries prior to this year.  I pictured myself either unemployed and shopping for my own coverage with this expensive (due to the amount of intervention required) pre-existing condition, or, perhaps, still employed, but spending way, way more on tests and procedures starting in January, and I decided it might be prudent to have the troublesome organ, the uterus, plucked from my abdomen and relocated to a medical compost bin during the current calendar year.

I hated making such a decision even partly for financial reasons, though it is a reasonable consideration, and there was a good deal of agonizing for several weeks. I called my doctor/surgeon early on and said I had decided not to go ahead. She said, “That’s fine—you’re not committed until you’re actually on the operating room table. But I’ll leave it on the calendar just in case.”

I checked into the specifics of the cost and was kind of astonished to find that, if I’d had two uteruses, I could have had them both removed for the cost of one root canal, or, then again, the cost of one dental crown, both of which I paid for out of pocket for this year (not to mention the dental implant, a completely separate matter, still in progress).

In the end, my mind wasn’t really at ease until I arrived at the hospital on surgery day, after a thoroughly unenjoyable day beforehand where a colonoscopy-style bowel prep was required. One mistake I made was changing my diet to include a lot more protein, in the form of eggs and tofu, per the advice of the Internet. This made me generally feel less well, and was hard to digest, complicating the required emptying of the intestines.

During that lousy day, the phone rang and I thought, “Ah, perhaps a well-wisher calling to say she or he hopes surgery goes well.” In fact, it was the mammogram people calling to say they’d seen something that needed follow-up in both breasts. I was quite disheartened for an hour or so there, fearing that just as one medical hassle finally was ending, another was to start. I pictured my sisters at my funeral and had a good cry; I may have listened to a little Chris Cornell.

But then I remembered that cancer is found in only four out of a thousand such rechecks, and my doctor/surgeon, while offering me the option to postpone surgery in favor of having the mammogram recheck right away, pointed out that, while she couldn’t assure me of this, it could be a case of magnifying a digital image enough to see something that is not a problem and has always been there, just never seen before. My mood returned abruptly to just bowel prep mood, rather than bowel prep plus dying of cancer mood, and the day went on unpleasantly enough.

The next day, which was last Thursday, I took a cab to the hospital at noon and soon I was lying on a bed in the “Come & Go” department, with a nurse struggling to start an IV in the back of my hand. It came over me then that, unless I was in the mood to make a semi-dramatic last-minute decision, I no longer had to think about whether I was going to have this surgery or not, which was a relief.

Wednesday, June 15, 2011

Sparkling Beautiful Sunday

Last weekend was amazingly wonderful. A lot of stuff seems to be amazingly wonderful lately now that I’m making a much more determined effort to put aside ruminations regarding the past and the future. There is so much to enjoy.

Last Friday night, I went to see Jeff for acupuncture, which is always hugely pleasant. The next day, I met not one, but two, of my neighbors from the building next door, where the griller lives. One has lived there for more than 20 years, and seemed delighted to meet a neighbor, and the other has lived there for 13 years, the same number of years I have lived in my current building. I always thought she was mean because she doesn't grin into my kitchen window when she's taking out her trash, but she's nice.

I often get her mail (because Laura is exactly the same thing as Linda, and 551 is exactly the same thing as 555), so we chatted about that, and she also said some other very interesting things, including that she doesn’t like the stuff piled up in the common areas of her building, and that periodically, the fire marshal is notified, and the person who owns the stuff clears some of it out, only for it to pile up again later, which means, at least, that he does take those warnings seriously, so maybe he also takes a request not to grill in a certain location seriously.

I mentioned to Tom that the grill remains in sight, but he said maybe it’s just being stored there, and maybe he’s right. Anyway, there has been no grilling, but even if there is, I’ve had some sort of breakthrough, I think. Along with trying harder not to drift off into the imaginary past and future, I’m putting more attention on my own experience when I’m upset.

When I noticed the grill still hanging around after the alley was cleared out, while I did think, “I may have to do something else about this,” I also consciously inquired into my own experience: How did I feel about seeing the grill? Angry? Agitated? What I felt was something very customary: fear, as a pressure in my chest. I think it’s the fear that someone will take advantage of me and I won’t be able to stand up for myself, or simply fear about having conflict and the danger that may bring.

I’ve been asking myself somewhat frequently these days, “What general emotion am I having? Fear, anger, sorrow, happiness? What exactly does it feel like? How do I know I’m having that feeling?” It is proving to be such a fruitful practice, because it takes the focus off the thing outside myself and how I’m going to struggle to change that external situation or person, and instead helps me to be with myself.

When I turn immediately to how I’m going to get X person to do what I think he or she should do, I’m abandoning myself. My own experience doesn’t get seen at all, and the energy of the emotion, I’m guessing, gets stuck. Then, when I find myself eating a pint of ice cream, I have no idea why. It seems to have come from nowhere, but it’s no doubt something inside me seeking comfort, since I’m not providing myself with comfort and attention—I’ve tuned out my own actual experience completely.

Turning in a detailed way to the concrete experience also makes me feel much more calm, capable and confident, which is somewhat paradoxical, since I’m not even thinking at that moment about how to handle the actual situation. So I am loving this exercise and have found myself almost looking forward to difficulties so I can try it again.

Yesterday was the 21st anniversary, to the day, of the first time I went to Howie’s sitting group.
(Yes, I am the world’s slowest learner.) I was there last night, as I am almost every Tuesday evening, and told him it was our anniversary and thanked him for all he has given me.

Last Saturday morning, I met a third neighbor still, while doing laundry. Jan has lived around the corner for nearly 30 years, with her identical twin. We had a very nice chat. I have so many neighbors on this block alone, and know so few of them to say hello to, so I really appreciated meeting these three friendly people.

After laundry, I went to Rainbow and then cooked up a pile of things, which took well into the evening.

Sunday was even better than Saturday. I’m writing a thing on Freedom from Training Wheels for the Chronicle, so I bestirred myself to Sunday Streets, which featured a car-free stretch from 17th and Third, I believe, to Third and Palou, well into the Bayview neighborhood.

First I hung around Freedom from Training Wheels for a while and watched a bunch of awfully cute little kids rolling up and down on tiny bicycles, which was just as great as you’d imagine. I interviewed one (very) young lady, a person after my own heart who started by making sure I was going to spell her name correctly in the newspaper, and then watched at my elbow as I wrote down her observations to make sure it was, word for word, what she’d said.

Toward the end of the time the streets would be closed to cars, I rode down to Third and Palou. I have never been there on a bike and found it kind of flabbergasting to be seeing so many things in my own city for the first time after living here for nearly 30 years.

I had been standing at Third and Palou for about three minutes marveling over this when a melee broke out, fortunately primarily a shoving match, no sign of weapons, but it was kind of startling how immediately it went from involving two people to involving 30 people, while an announcer at a nearby event pleaded in vain over a P.A. system, “We’re a community, so let’s act like one.”

I headed north again and stopped at a stage where musicians were playing and the bubble lady’s magical bicycle was sending thousands of shimmering spheres into the sunny skies. It was enchanting. I stayed there for quite a while.

Farther north still, but still in the Bayview, there was an outdoor poetry performance underway. It was really a wonderful afternoon. From now on, I’m not going to miss Sunday Streets.

That evening I went to Eugene’s sitting group for the second time in a few weeks. I’ve vowed to get there regularly, where I always see so many people I know and where the energy is so upbeat and welcoming.

Friday, June 10, 2011

Bathtub Kayaking

Late in April I went to We Be Sushi for dinner with Tom, his girlfriend, and her son. Close questioning revealed that the son’s birthday is the very day after mine, so he has just left his teens and I have one more year before I turn 50.

Did I mention the very helpful thing my father said when my mother had cancer? Before I tell you what it was—cliffhanger!—I wanted to mention that after my mother’s cancer was gone, I got an email from her out of the blue giving me permission to mention it here. That was very sweet of her.

As for my father, he said he tries not to worry about anything he can’t control, and certainly not about anything not happening today. That is at the other end of the spectrum from my own procedures, but it seemed to have some merit nonetheless, and proved to be very helpful. Even setting aside my mother’s cancer, I’ve spent far too much of my life brooding over the past and worrying about the future and I vow to enjoy as many moments as possible from now on, past (probably well past) my life’s halfway mark.

But there is no reason for gloom on that score. For one thing, I’ve spent so much time in fruitless mental pursuits that it’s entirely possible I could have more moments of being present in, say, the 20 years to come than the 49 years already gone. Actually, I could probably do it in one year.

Also, as it said on the front of the birthday card I got from Carol Joy, “Birthdays are good for you. The more you have, the longer you live.” Good point! And a nice contrast to our society’s highly prevalent view that old age is to be dreaded.

I went to Ypsilanti for a week just before my birthday and had a lovely time. I stayed with my parents, of course, and went with my mother to a couple of appointments. My sister came over thrice, I had lunch with Helen and Ginny at Seva (unfortunately, Sally and I couldn’t work out a visit, which I was looking forward to, but I’m sure we will next time), and Amy had me over for a lovely homemade vegetarian birthday dinner with her and her son Mike. She roasted a variety of vegetables, and baked me a birthday cake.

She said I was the first person ever to request a white cake with white frosting, a year or two ago, but it has now taken hold in their family enough that Mike requested the same for his most recent celebration. I said I was glad to learn I had had at least some positive effect on him.

Later in the week, my father announced there would be a “birthday ceremony” around dinnertime, and at the appointed hour, produced a beautiful fruit-covered tart, a card, and the check he customarily mails every year. I am very fond of that check. Because it comes some decades after childhood, it always makes me feel quite spoiled and loved.

Amy and I also got together on another day for lunch at Seva, and Dad and I took a trip to the cemetery one sunny and tranquil afternoon. I’ve never seen a family member’s grave before and found it slightly arresting to see our last name on a headstone. One of the markers was that of a little girl who died after only 19 days, of something that would be readily fixable now. It was overwhelmingly sad to see that stone, with a lamb carved in one corner, and to reflect on what those 19 days must have been like for her mother, who knew from the beginning that her child would not live. Three women on my father's side of the family all outlived a daughter.

Living for a week where there is a TV let me get caught up on Rachel Maddow, and, less happily, on Palin and Weiner. Rachel said she got an email from her parents saying that if they die, they would like such-and-such public couple to adopt her, which I thought was endearing. During the many days of non-stop Weiner coverage, Rachel said something like, “Perhaps you were out today and didn’t get to watch TV. Maybe you missed your TV. If you want to know what your TV looked like while you were out, it looked like this,” and then we saw a screen divided into four quarters, each displaying Congressperson Weiner’s face.

Late in the week, I had lunch at Haab’s with my Uncle Rick and his fiancée, Janet, about which I had had some slight trepidation. Mentally, I was one hundred percent on board, but I feared that when we actually met, I might be overcome with grief over my departed, beloved aunt, but it turned out perfectly fine. Janet is lovely—outgoing, cheerful, full of enthusiasm. She and Uncle Rick have known each other since high school, and are doing all sorts of fun things together. I fully and completely endorse this happy match.

Uncle Rick has lost nearly 40 pounds and looks utterly fantastic. I hasten to say he looked entirely fine before—he’s one of the more handsome uncles around—but he looks amazing now. (Actually, Janet said that when one of her longtime friends learned she was engaged to my uncle, the friend said, “You’re kidding! He was the It Guy in high school!”)

One thing Janet likes to do is go kayaking, and so we discussed the three of us doing this together next year, as they’re about to buy a house on the water. My mother is already worried about it and suggested I take some kayaking lessons in the meantime. I pointed out that Uncle Rick and Janet’s new house is going to be on an internal, probably very placid, waterway, and that I’m sure Janet will save me if anything goes amiss. My mother wasn’t reassured.

“Wait!” I said. “You want me to go kayaking in San Francisco Bay?”

“No,” she explained, “I didn't mean you should go out past the Golden Gate in a kayak. I meant in a swimming pool.”

Friday, May 27, 2011

A Cornucopia of Growth Opportunities

A few days ago, I saw something that caught my eye: a note on the neighbors’ garage saying to pick up the trash in the alley. Did that mean it was now possible to walk through that alley? Sure enough, the grilling neighbor has cleared out the alley and the trash picker-uppers can now walk through it. In fact, there is only one thing visible at the end of the alley I can see from my kitchen window, and I know I don’t have to tell you what that one thing is.

Now, my truly very pleasant letter mentioned that the fire marshal says grilling must be done at least ten feet from any structure, and that the fumes were miserable for some of us, but it also referred to the stuff stored near the grilling site. I suspect that by the time the letter’s contents were fully processed by the neighbor—and this, though irrational, is highly human—he concluded that grilling would be perfectly fine if only the stuff was out of the alley. Though he’s still inches from the side of the building and it’s still going to stink.

Ai yi yi.

Well, these are obviously where some of my ongoing opportunities for growth lie: my building manager, grilling, smoking, and the phone company. Oh, and a few things at work, of course.

One thing I’ve done over the past year or so is identify some categories of things I’m not going to contend over. One is noise. Using earplugs is not ideal. It can be uncomfortable, but in the service of reducing conflict, I’ve decided that, except for the most extreme cases, I will simply use earplugs and be done with it.

Things are also largely fine with the building manager, not to assume that will always be so. In addition, I virtually never have conflict while getting around by bike these days, which is something I used to have a lot of. But challenges definitely remain.

One recent day was particularly awful. My phone has been broken for a while, so I did sign up for WirePro, wait a decent interval, and call to make a repair appointment. Needless to say, the phone company never showed up, and in the course of the day, I completely lost my temper about ten times. I was rude, I was sarcastic, and for the grand finale, said “F*** you” to a phone company employee. Obviously, I’m not proud of this, but I recount it as a public service, so that everyone who has never done such a thing can feel even better about herself or himself.

That very same day, I was dealing with another situation where something I had bought turned out to be damaged. Fortunately, I kept my temper in that situation, though as the day wore on, my emails on the subject became increasingly detailed, emphatic and lengthy. However, when I reread the correspondence later, there was nothing I felt bad about, though at the end of it all, I apologized for getting tense, anyway.

About 3 p.m., I was screaming and yelling at someone at the phone company for the nth time and writing emails regarding the other thing when I heard something happening in the back yard of my own building. Something was being delivered. What was it? I think I don’t need to tell you what it was.

The universe was obviously messing with me, sending yet another grill into my life in the middle of such a colossally terrible day. I had to laugh, or at least smile wanly.

However, this wasn’t a charcoal grill. In fact, it was the very thing I suggested years ago that the building manager get: a propane grill. This is fine. That very evening, she and a friend or two used it, and all I could smell was whatever they were grilling, which smelled good. Yes, they will probably sit out there from time to time making a racket until 2 a.m., which merely means I will use earplugs.

As for the next-door neighbor, I’m somewhat back in problem-solving mode, though there may not even be a problem. I haven’t observed any actual grilling. Grilling is in the imagined future. I’m thinking a bit about what the options might be, but there’s nothing to do right now, and maybe there won’t be.

One thing I considered is: What if I were Anne Frank? Did Anne Frank burst out of her hiding place and say, “My good man, put out that loathsome cigar at once!” She did not. Whatever happened, she had to put up with it, and I can choose to do that, too. That’s on the spectrum of choices.

To put it in Rapid Relief from Emotional Distress terms, I accept that there has been grilling right outside my kitchen window and that there may be more of the same in the future. I choose to be happy, to enjoy my life, to have good relations with my neighbors, and to have an apartment that is nearly or entirely free of noxious fumes.

Now I get to think about the choices that may lead to achieving those goals.

Tuesday, May 17, 2011

Vainness Cream

I am going to have to strip the best-sunblock title from Vanicream. If you insist on a mineral sunblock, then Vanicream is definitely the one, in SPF 30 or 60, but if vanity trumps health considerations, and/or you just can’t stand to have every pore sealed shut, try this combination of mineral and chemical ingredients: Elta MD UV Facial (Moisturizing Facial Sunscreen, SPF 30+). No fragrance, no paraben, protects from UVA/UVB, doesn’t seem to block pores, looks totally fine, not greasy, not sticky, not white or pink, easy to remove.

If your skin tends to break out or be oily, go with the Elta MD UV Clear (Very Light Sunscreen, SPF 46). This is on the expensive side and will flake if applied generously, but seems good if applied lightly. And if you are called upon to exert yourself, perhaps the Elta MD UV Sport (Very Water Resistant Sunscreen, SPF 50).

The chemicals involved aren’t the worst chemicals. In fact, these sunscreens get wonderful ratings on the Environmental Working Group website. They contain micronized minerals, which is fine—such particles are big enough that they shouldn’t get into your lungs, etc. It’s the nano-ized particles one might wish to steer clear of.

Emily at work was the one who told me about Elta MD. She has given me so many handy hints over the years, I went ahead and proposed marriage, in my own way. During a conversation about something else, I said, “I’ll be your roommate when you’re old, if you want.”

Tuesday, May 10, 2011

Grill Drill

Naturally, right on the heels of phone problems came grilling problems. I’ve been noticing lighter fluid fumes coming in my kitchen window the past couple of months, just a little, and I assumed someone was grilling on a nearby deck or rooftop. This past Sunday, it was much stronger, and I ended up with a headache, and then realized someone was performing the heinous act of grilling with charcoal right outside my window, in the trash area shared by our building and the building next door, where it is now illegal to smoke cigarettes.

At first I thought it was the young fellow who most recently moved in, but after sitting with it for a bit, I realized who it had to be: the owner of the building next door, who has not demonstrated much in the way of affability, and who is an extreme pack rat.

In our building, there is an alleyway that leads from the sidewalk to the trash area. The people who pick up the trash walk through it in order to carry out their duties. The building next door has the same feature, but no one walks through it because it is literally filled to the ceiling with stuff. This fellow was grilling about one foot from the wooden side of his building, and just a few feet from the enormous pile of tinder in that alleyway.

It has crossed my mind more than once that the building next door is a firetrap, but I’ve also been living here for 13 years without burning to a crisp, so I haven’t worried about it too much, but if he’s going to grill right there, that amplifies that worry considerably, and Tom felt the same way.

I’d of course drafted a note right away and was going to just drop several copies outside the neighbors' front door, since I hadn’t figured out who the griller was at that point. Once I figured it out, I thought better of the note, since I’m not sure this guy won’t come over and punch me out. (Though Tom said I could put his name on the note along with mine, so maybe it would be one punch for each of us, rather than two for me.)

I called the fire marshal and they said absolutely it is not permitted to grill within ten feet of any structure, so we’re on firm ground there.

I went to sleep last night thinking this all over. Whereas once upon a time, I drafted a note and sent it shortly thereafter, I’m starting to get the hang of waiting, waiting, waiting. This allows some time for the pieces to fall into place, for helpful research, to understand what exactly I hope to achieve, and to make sure that attention is given to the matter not only when I’m angry and anxious, but also when I’m calm and in a good mood. Better ideas are likely to arise in the latter case.

At one point, I was thinking I was not going to start with this guy and that I would just let the fire marshal handle it—they might well like to have a look at that completely blocked exit.

I woke up at 2 a.m. (ugh) and was almost tempted to get online and continue my research, but instead I told myself that that would likely guarantee I would not get any more good minutes of sleep before morning. I told myself it was regrettable that I was wide awake at such an hour, but that this was the exception, not the rule, and that I would undoubtedly enjoy many more fine nights of sleep in the future. I told myself that a good plan of action regarding the grilling would emerge in time, but that the process was still underway.

In short, very different from former procedures.

By early morning, I’d decided that I will actually go ahead with a note, but not a terse and businesslike one, rather a friendly, chatty one that sounds like of course he is a good guy, and I’m a good guy, and Tom is a good guy and of course we all are interested in a favorable outcome. I decided not to assume that he’s a bad guy who will behave poorly.

Then I said metta phrases to myself, and the next thing I knew, my clock was chiming, I had slept, and I remembered three dreams, though not necessarily the world’s best dreams. I called Tom around 7 a.m. and said, “I thought it would be nice to start the day by discussing grilling.”

He said good-naturedly, “Didn’t we end yesterday by discussing grilling?”

“I think it’s nice to start and end every day by discussing grilling,” I said, and read him my latest note. “Very nice!”, he said. I’m going to continue to sit with it, and then I will probably send it off. Now that I know who the griller is, I can just send it directly to him.

Monday, May 09, 2011

It’s a Little Harder if You’re Actually Dead

Lately my mother gave me a compliment that I appreciated. She observed that I was doing some new things, and doing some things better. “It’s largely due to your cancer,” I told her. “Thank you for getting cancer. That was excellent parenting.”

So, yes, my mother very graciously did get cancer and is now, thank goodness, free of it. The diagnosis was early in February and successful surgery—no radiation or chemotherapy required afterward—was late in April, on Good Friday, but my mother did better than Jesus by twenty-four hours, rising from her bed the very next day. It took Jesus until Easter Sunday. Of course, he was actually dead, so credit where credit is due.

I am not a Christian. I don’t believe in any deity (though I do believe in the kindly presence of my grandmother in heaven), but because I’m a trumpet player, I’ve spent any number of Easter mornings in one church or another, and I do love a rousing Easter sermon, with its themes of redemption and rebirth, another chance and more chapters to come.

There were some snags along the way, including a medical complication that threatened to prevent surgery, and required several tests. I’ve been dreading losing my mother (and father) since I was four (i.e., when it occurred to me that they would die, ditto me), so when the positive cancer diagnosis came, I was utterly and completely beside myself, grief-stricken and sure I was soon to be half an orphan.

One thing became clear immediately: my usual way of coping with crisis was not going to do. That usual way is to line up the amount of emotional support and comfort I think is required and avail myself of it freely. However, this was going to require so much of both those commodities that after two weeks, there would probably be no one left willing to offer either, at least not on a pro bono basis. I was going to need a new plan.

It is also my custom to tell everyone everything, but this was kind of a big deal, and my mother has the opposite approach, so I didn’t feel right about sharing her news with every soul on earth and was selective in my disclosure. I never told any co-worker, for instance, even Emily. One day, I received phone messages of concern from Amy and Sally. I made a mental note that I needed to call them back, and then realized I could have made the exact same mental note 40 years ago! Those are my friends from when I was seven, still here in one case, and here again thanks to Facebook in the other case.

I was driven back into therapy by this, and that has been a good thing. I’m making better use of it this time around. (Which therapist? Both! Sorry, therapists, I know you don't like it when people see more than one of you at once, but I need you both.) I also realized I needed to make haste and read the two books my mother most often cites as helpful before she died: Handbook to Higher Consciousness, by Ken Keyes, and the aforementioned Rapid Relief from Emotional Distress. I’m just starting the former, but the latter has been ridiculously helpful. It has changed my life, actually.

(Of course, every time I mentioned some helpful tidbit I’d gleaned from it, my mother cited the other: “Yes, well, in Handbook to Higher Consciousness, it says … .”)

In addition, I went to see Patricia Meadows, a wonderful Somatic Experiencing practitioner in Novato, one of the teachers of the class I took at the Zen Center. I saw her only once—I love her, but getting to Novato is a bit of a trek—and it was exceedingly helpful. I left understanding completely that while 48-year-old Linda might have a coping skill or two, it was four-year-old Linda who was completely distraught. Patricia said I would need to build up the emotional muscle to stay with the feelings that arose. That idea has stayed with me, and I also have made a practice of going back in time to reassure that younger self. These imaginary journeys can be kind of distressing, because I can’t tell that child it’s all going to come out OK. I find this work very helpful in my current life, but revisiting how anxious and lonely I felt in 1966, how chronically hungry for attention and affection, makes me feel kind of heartbroken for that little girl.

So, all of these things have been extraordinarily helpful: therapy, reading the book, seeing Patricia, identifying some changes I needed to make, the mental trips back in time to provide attention and comfort. And I’m seeing the fruits of this work, and I’m delighted. Plus my mother is fine.

Early on, it was clear that that would probably be the case, though you never know with cancer, but it still took a while for my initial upset to abate. The day she was actually having surgery was a hard, kind of horrible, almost surreal day. People die in surgery! My father provided great, detailed updates and spent the night with her in her hospital room. She was able to go home the next afternoon.

Tests performed on the matter removed showed that the cancer had been the earliest possible stage and was now therefore gone.

All is well. Which means my mother is never, ever going to die!