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.