Doing Cancer the Right Way

Cancer On the TV

2009-05-11T05:42:00.000-07:00

I'm watching two TV shows right now where a character has cancer. The first one is the incomparable Breaking Bad, with Bryan Cranston. His character, chemist-turned-high-school-teacher Walter White, has a form of lung cancer that — we suppose — has been brought on by long-term exposure to chemicals. The other is In Treatment. One of Dr. Paul Weston's patients, April, has Hodgkin's lymphoma. She's not telling her parents, though, because they already have such a burden at home with her autistic brother.

Yeah, right. Like there's really a way a 23-year-old student without an income can enter treatment for cancer at a major hospital in New York and not get her parents involved. Do the idiots — that's right, idiots! — who wrote this understand that one of the things they talk to you about right before you go into an infusion room is HOW YOU ARE GOING TO PAY FOR YOUR TREATMENT AND WHETHER OR NOT YOU ARE CURRENT WITH YOUR BILL?

If you didn't catch my meaning, I'll say this another way. They don't start doing a thing to you at the oncology center until they sort out how any health coverage you may have will pay for it and then they make you understand what your share of that will be. Even with insurance, it is not free of charge to you. I'm afraid that, although it makes for fascinating TV, April cannot get treatment for her lymphoma without getting her parents' bank account involved. I will say this again — before you can even set foot in the infusion room, your first stop is the financial office.

Oh, even worse, Gabriel Byrne (the therapist) does for April what she cannot do for herself and takes her to "the hospital" for chemo … if you are getting in-patient chemotherapy, you certainly are not going there under your own power or even on your own two feet, much less all alone or with some stranger (yes, the therapist is basically a stranger). No, in her case, she's getting outpatient treatment and that doesn't take place in a hospital — again, the costs are the reason why, plus, you don't need to be in a hospital. Secondly, April subsequently refers to her port, which the unnamed hospital people somehow placed in her chest while she had fainted or something, and then they pumped chemo drugs that she doesn't know the name of into her right after that. Later, right in the good Paul Weston's office, she doubles up in pain because of the port … oh, for fuck's sake.

The port installation is a surgical procedure. You are unconsious when it happens, and it happens well before you get your first infusion. It doesn't hurt. You can't feel it. It's below the skin, right under your collar bone. I've blogged about this before.

In Treatment is based on a series from Israel, and maybe this all this shit happens in Israel, but not in the U.S. of A., honey. Scripts for In Treatment are written by Marsha Norman, author of a tiresome 1970s play called 'night Mother, in which a young woman argues for five acts with her mother about why she wants to commit suicide. She also wrote Getting Out, about a woman leaving prison. I had no idea Ms. Norman was still kicking around, applying fatuous and misguided notions to some of life's most dramatic moments — you know, offing yourself, release from prison, getting cancer, the list just goes on!

I know why doctors and police officers get so disgusted with television that purports to show the drama of their respective careers. And I have attempted to gently tell people that a diagnosis of cancer and the ensuing treatment doesn't play out in real life like it does on television. There are no blinded-by-the-light moments. There are no plateaus of sweet relief and angels singing. After spending your life watching how people do this on TV, you would be awfully surprised how much the same everything — and I do mean everything — is, and how uncertain everything still feels.

This is the truth that Breaking Bad gets to. In fact, they got to it in last night's episode. The unlucky Walt White, who's chosen a path of meth manufacturing because he believes he's going to die soon, learns that the heroic efforts of his medical team have succeeded in stopping the progression of his disease. Time to celebrate! Right everybody? But he tells the party crowd his unknowing wife had assembled in honor of this occasion that, when he got his diagnosis, he thought, Why me? and that when he got news of his remission he also thought, Why me? And then he proceeds to get mean, messy drunk. He's not happy and smiling. He's more uncertain and angry than ever.

Having reached the limits of what can be done to his body, now Walt has become obsessed with cutting out the sludge and rot from his house, sawing, welding, replacing, improving, trying to make it right, get the shit out.

This is the cancer experience. This is what the real thing is like.

Plan B

2008-11-30T09:44:00.000-08:00

Some people who know me may know that I have not shopped at Target for about the last three years. That's right! No Target. At some point I became aware that Target had a policy that if any of its pharmacists had "moral problems" with dispensing the so-called "morning after pill," Plan B, that pharmacy could refuse to fill the scrip. Turn your intercoursing ass away and send you to someone who can put up with you and your medical needs.

For all I knew, any pharmacy company in the U.S. could have exactly the same policy. But Target likes to brand itself as hip, urban, tasteful, and forward-thinking. (This is in contrast to Wal Mart, whose brand is traditional, family-values, and no nonsense.) Good design is for everyone at Target, but good medicine is not. It is important to note that Plan B is birth control. It's not an abortifacient. Birth control is still legal in this country.

This really pissed me off. Then I read about it again in the always-profane column "Savage Love," by Dan Savage. I contacted Target and told them that this policy amounted to discrimination and that anyone, anytime, anywhere, who had a prescription that was lawful was entitled under the law to have it filled. Here's what they said in reply:

Dear Target Guest

In our ongoing effort to provide great service to our guests, Target consistently ensures that prescriptions for the emergency contraceptive Plan B are filled. As an Equal Opportunity Employer, Title VII of the Civil Rights Act of 1964 also requires us to accommodate our team members’ sincerely held religious beliefs.

In the rare event that a pharmacist’s beliefs conflict with filling a guest’s prescription for the emergency contraceptive Plan B, our policy requires our pharmacists to take responsibility for ensuring that the guest’s prescription is filled in a timely and respectful manner, either by another Target pharmacist or a different pharmacy.

The emergency contraceptive Plan B is the only medication for which this policy applies.
Under no circumstances can the pharmacist prevent the prescription from being filled, make discourteous or judgmental remarks, or discuss his or her religious beliefs with the guest.

Target abides by all state and local laws and, in the event that other laws conflict with our policy, we follow the law.

We're surprised and disappointed by Planned Parenthood’s negative campaign. We’ve been talking with Planned Parenthood to clarify our policy and reinforce our commitment to ensuring that our guests’ prescriptions for the emergency contraceptive Plan B are filled. Our policy is similar to that of many other retailers and follows the recommendations of the American Pharmacists Association. That’s why it’s unclear why Target is being singled out.

We’re committed to meeting the needs of our female guests and will continue to deliver upon that commitment.

Sincerely,
xxxx

So the only barrier between you and a filled scrip for Plan B at Target was if you were unfortunate to encounter a pharmacist who possessed "sincerely held" religious beliefs against the drug. What if those beliefs were insincere? Would you just give me the damn pills then, you meddling jerk-off?

It was remarkably easy to turn away from Target after this exchange, and it's a habit I'm not prepared to change, in spite of the fact that Plan B is now available without a prescription for women over 18. (I suppose they can still refuse to give it you, even if you have bruises to show them.)

But do I need a "plan B," in light of this new development? I know I don't need new ways to spend money. But I do wonder if there are old habits that I'm hanging onto and can't remember why anymore. Yes, this is the sort of thing having cancer makes you think about.

No More Radiation

2008-11-30T09:42:00.001-08:00

I am done with radiation treatments. It was an emotional moment, when my kid and the radiation crew threw confetti on me. My doctor presented me with a plaque has has a quote attributed to John Wayne: "Courage is being scared to death but saddling up anyway."

Two More Treatments Left

2008-11-25T10:58:00.000-08:00

It is very busy in the radiation center because all patients are getting five days' worth of treatment in three days. You have to let at least five hours elapse in between treatments.

Things People Have Done For Me During All This

2008-11-25T06:12:00.000-08:00

1. Brought my family meals, including incredible homemade chicken parmesan. Packed a lunch for my child once a week and brought it to school.

2. Called me immediately after one of my little handmade purses sold at Parts and Labour, then called me again about 45 minutes later after another one sold.

3. Taken me to chemo and brought me crunchy tacos from Hillbert's (getting chemo made me hungry).

4. Checked in on me to see how I was feeling (crappy! thanks!).

5. Knitted me a hat to cover my bald head.

Five More Treatments Left

2008-11-24T05:52:00.000-08:00

I now have five radiation treatments left. I'm going in this morning for a treatment, then coming back five hours later for another one.

The skin on my clavicle and shoulder is all brown-red and starting to slough off, like when you get a bad sunburn. But last week's break from the regimen was really helpful. I feel a lot better. This week will be no picnic, but at least it will be over soon.

I Want My Party Early

2008-11-22T05:59:00.000-08:00

Yesterday I made a decision — I am doubling up on my treatments for Monday and Tuesday, and I am going to finish radiation on Wednesday, the day before Thanksgiving. I want my confetti party early, and I want to drink champagne after. I am probably going to cry.

I try to keep thinking how bad off you have to be to arrive at the radiation clinic in a private ambulance, how bad off you have to be to be in chemo and radiation simultaneously, and that's not me. I can walk in there and leave on my own two feet, and in my own car. And the people who work at the radiation clinic are the most professional and nicest human beings I have ever encountered. But I just don't want to be there anymore and I am going to get this over with.

Rad Rads

2008-11-21T06:15:00.000-08:00

How do people blog all the time, every day? Their hip flexor muscles must be frozen at 90 degree angles!

This week in radiation: I have taken a "break" from my 28-day regimen to do a five-day "boost." This means they are now radiating only the tumor bed, from three angles. My clavicle has gotten very red and a bit painful from the other regimen and Dr. Trip decided to let me have a break and allow my skin to heal a little bit before we resume.

Here's what all I have tried to get some relief from the pain and itching:

Domoboro soaks (it's a powdered astringent you mix in water)
Gene's Vitamin E cream (you can only buy this online)
Cetaphil cream
Aquaphor ointment
Aveeno cream
hydrocortisone cream
an OTC steroid cream
RadX cream
Lily of the Desert aloe vera gel

Domoboro is good for skin irritations like poison ivy. RadX seems to be the best at relieving pain. The aloe vera is good for immediate relief but it flakes off or sheds in little rolls, because of its gel texture. Ibuprophen helps keep down the inflammation. Aquaphor is greasy but it's great to apply it before a shower so your skin doesn't get dried out from warm water.

Just one more boost treatment today. Then, it's three regular treatments next week, Thanksgiving break, then the final two. They throw confetti on you on your last day.

Going to Radiation

2008-10-29T12:27:00.000-07:00

Going to radiation is very annoying. I have to go five days a week. That really doesn't make any sense. If it's so good, why don't we go every day, seven days a week, until we're done?

The only thing I have to say in favor of this experience is, everyone who works for Dr. Trip (that's my nickname for him) is completely gung-ho about what they do over there at the Superconducting Supercollider Radiation Center. Man. I've never met people who are so into what they do. Whenever I have the slightest question or observation about what's happening, they jump at the chance to explain, explain, explain everything that's happening.

What happens? I don't pretend to understand all of this. I've previously had a CT of just my upper chest and neck ,and that scan is the guide for how they radiate me. It's a foreshortened view of that part of my body, and they get a look at all the numerous "slices" of my upper torso, all stretched out like a loaf of bread that's been pulled apart. All that information from the CT gets fed into the computers that delivers my radiation treatment. They are supposed to radiate just my breast and my lymph nodes on my left side — and nothing else, like my heart or lungs. They don't "eyeball" anything. It's all done with very sophisticated computers — state of the art, I'm told.

Five days a week, I go into the dimly-lit radiation room, where there is a machine that looks a little like a scanner and a hard "bed" you lie down on. I've got 4 Sharpie marks on my body now that are covered in clear stickers to protect the marks. Three are in red, right along my waistline. These are the marks they use to line up my body every day, corresponding to all these laser lines that are shooting out of the walls and ceiling of the room. One is in black and it's right at the top of my breast. It marks the edge of the "fly zone" of the radiation.

I eschewed their lovely exam gowns and I bring my own shirt every day instead. I lie on the hard bed with a wedge under my knees and they secure my feet with a little Velcro strap. My head's cradled in a plastic "bowl" thing. It allows for a bit of movement. That's good, because I must turn my head slightly to the right, so my esophagus doesn't get radiated. I have to raise my arms over my head and grab a kind of trapeze bar and stay that way for the entire time. They elevate the bed with me on it and my body gets close to the thing that the radiation comes out of. The technicians leave the room and close the lead door behind them. They see me on a TV screen on the other side of the room, and I can see a computer monitor that has all the data about what they're doing to me — not that I can understand it. The only thing I know is they can't mess it up because the radiation oncologist has input the data exactly the way he wants it and it's not possible for radiation to begin unless everything is precise. If there's any data highlighted in orange, that's wrong and they adjust things until it's no longer highlighted. There are no accidents. They can't radiate anything that's not supposed to be radiated.

The first thing that gets radiated are the lymph nodes on my back. Then the machine rotates around me three other times to get the other portions of the target area. When the radiation is being delivered, a lighted alarm goes off in the room. Each blast lasts around 10-12 seconds. Once when I had a different technician I commented that the blasts seemed longer than previous treatments. He gave me a very long explanation about it, but the upshot is, I wasn't getting more radiation than any other time. They just took a little longer to deliver the same dose. Again, the technology won't let them screw anything up.

A single radiation dose is 200X than what you get in an X-ray. I'm getting 33 treatments total. It opens a can of whoop ass on your tissues. Kill, kill, kill those cells. It's usually 10 minutes from the time I get out of my car and back again. That's how short the whole thing lasts. My skin is beginning to get a little red now and the area feels swollen. Remarkably, the few palliative steps you can take to help this don't do all that much — creams, ointments, etc. I'm not grossly uncomfortable yet but I've seen on other people how bad it can get. Mostly, I get extra tired sometimes. That's the cue for me to nap or go to bed early. Of course, I would rather ignore how I feel and keep doing what I'm doing, anyway.

Today's treatment will be No. 16. (Nov. 4). Almost halfway.

Things I Don't Want to Do

2008-10-16T05:49:00.000-07:00

What is it about big illnesses like cancer that awake the sleeper cells of pagentry and celebration? I'm talking about the walks, runs, radio promotions, and all manner of public testimony about your disease. It is endless, the opportunity to lay yourself bare before semi-caring strangers. ("Oh, breast cancer," they're thinking. "Hope it's never me." Yes, you do hope that.)

I know, time was, if you had cancer no one even uttered that word. Maybe even you didn't know you had cancer. It was too awful to talk about. In the latter part of the 20th century we set about to change all that. And we did. The problem is, no one wants any limits on the discussion and the endless "sharing" of our stories. I know that no one in the Cancer Nation wants to bother me, but just once I would like a request for participation in an event to begin with the words, "We understand if you aren't interested, but we would like you to know about …"

Here are a few things I do not want to do just because I have been diagnosed with breast cancer:

1. Stand with 399 other women for a "bras across the bridge" moment. You're holding a bra (yours, maybe? one you don't need anymore? wink, wink) and you hook yours onto your neighbor's and form a giant chain of bras, so people will see … a chain of bras.

2. Buy a pink bracelet. Or wear one that's free.

3. Go on Christian radio.

4. Hand out refrigerator magnets reminding women to "feel your boobies."

5. Pose for a dreamy portrait of myself wearing my cancer cap, or worse, pose while I was bald.

Okay, so what is this blog about, right? It's a public statement about my experience, too.

I guess I am not one who finds comfort in numbers. This communication is to my friends and acquaintances, and yes, an occasional passing stranger reads it, too. But I'm not trying to get anyone to do anything. I don't think my "story" is going to change much for someone who's not a cancer patient, and as for those who are being treated for cancer, well, we pretty much know how to find each other, don't we?

Radiating Waves and a Tall Boy

2008-10-02T14:38:00.000-07:00

I had 21 weeks of chemotherapy, altogether. I felt every moment of it.

But now I've had nearly four months' respite from active cancer treatments. I feel much better. They stop giving you chemotherapy, and then you feel better. I feel almost normal, except for the fact that I still get tired fast (been puttering around the house, trying to find places for items displaced by the ongoing home renovations). I am not so interested in going back and being a cancer patient again.

So it was without much enthusiasm that I visited the radiation clinic today to discuss my upcoming treatment.

Nurse: So, when do you want to start?
Me: I don't want to.

(LATER)

Me, to Dr. : Why am I even in here? There are people out there in the lobby who can't even walk they're so sick. What is the deal?
Dr.: You had some bad luck.
Me: Oh.
Dr.: Those people out there, I'm just trying to buy them some more time.
Me: Oh.
Dr.: I'm trying to stop any illness at the microscopic level. Prevent you from being one of them someday, five, ten, twenty years from now.
Me: Yes, I was planning to be around for a while.
Dr.: Just think of this as your daily, 10-minute appointment at the 7-11.
Me: What, do I get a tall boy in a paper bag when I come here?
Dr.: Ha-ha. Sure, if that's what you want.

Between Scenes

2008-09-24T11:29:00.000-07:00

Nothing is happening to me right now. It's been four weeks since my surgery and I've healed just fine, no infections. I'm waiting to start radiation.

We took a vacation from this again, just Roland and me. We went to San Francisco. We ate at Cafe Zoetrope in North Beach, went to wine country in the Russian River Valley, met up with friends at a burger joint on the Embarcadero, and visited Alcatraz. This is me on a hilltop in the Russian River Valley. It is insanely beautiful there. Boy, you have to be stubborn to be a winemaker, is all I can say. The other photo is a posted sign at Alcatraz, obviously.

They try to feed you this crap about Alcatraz not being such a bad prison, just a cold and boring place to be. Why, there were even families living on the island, and they had Christmas caroling and gardens, and everything. All the cells and stuff are on the second floor of the building, which means there is a basement/ground floor that the public doesn't see. I bet that was nice, too, back in the day. Still, it was kind of strange how the Western sun streamed in pleasantly through the barred windows.

We also saw Spoon at the Fillmore. They gave a good show of old and new favorites, plus a couple covers.

In Dreams

2008-09-10T06:26:00.000-07:00

Some people who know me know that I've always had a bone to pick with That Big Sports Celebrity Who Is Also A Cancer Patient. My spouse argues there is no backlash to foment against this guy, so my bumpersticker ideas ("I'm 6ick of [him]"; "7 is enough already") won't go anywhere.

Celebrity, upon retirement from his sport, declared he would work tirelessly to bring awareness to the problem of cancer and offer support to those affected. When I looked for support for my young child, I did find some help from an agency that is funded by Celebrity's foundation. Yay, he really does do something, right? But the main agency where I get support for myself doesn't receive a dime from Celebrity, even though someone he once cared about is affected by breast cancer.

Whatever.

One of my recurring dreams is, I am working in a restaurant. (I waited tables for 5 years.) Last week I had this dream again, and believe it or don't, Celebrity was in it. He was a waiter, along with me. He was stacking plates and folding napkins and shuffling menus. We knew we had cancer in common and that our current work was a good service to others (see how the unconscious mind loves wordplay?).

So I find it interesting that Celebrity's out-of-retirement announcement hinges on his desire to uh, something about shouldering the burden of cancer. This just rings as disingenuous to me. Why not be truthful? He loves being loved for the thing we loved seeing him love. Dating the Rock Star, the Preppy Fashion Designer, and the Semi-Talented Waif Actress got boring. There were rumors about him seeking high, statewide office, but I just couldn't see him in a suit, sitting in a meeting about the State Preservation Board with the delegation from East Texas. Those political people are too boring and unsophisticated for him and the job itself is a drag.

I suppose it's possible to be completely self-aggrandizing and yet doing good for others. But I don't buy it that the first seven times were for just himself, but this next time is for the Cancer Nation.

Drink the Bubbly of Your Choice Because

2008-08-29T13:30:00.000-07:00

I just heard from Dr. Solemn. He told me that the pathology came back and there is no cancer in my tissues.

I'm Okay

2008-08-27T08:24:00.000-07:00

Surgery yesterday went fine. Solemn and IH did their thing. They discovered the cavity from my previous surgery, at end of a little corridor inside my breast, almost like a small chamber at the end of a cave. Solemn re-excised the tissue, IH filled in the cavity with fat from another spot in my breast and closed the incision. He didn't reposition my nipple (thank God) as he planned to, because it made an acceptable return to its proper place on my breast, once he was done with his work.

I'm a little stiff and sore, but really want to avoid the pain meds, as they keep me awake at night. Last night I got up and watched a show about people wanting to know what their houses were worth, a show about a couple wanting to move so the wife would have more room for her doggy day care business (don't you want them for neighbors?), an infomercial about total cleansing, and the rerun of CNN's talking heads, blah blah blahing about Hillary's speech last night.

Okay, I'm rambling about nothing, so I'm going to go. Back when I'm more lucid.

Surgery Today

2008-08-26T07:52:00.000-07:00

Today is my surgery, a so-called partial mastectomy (lumpectomy) and scar revision. I will also get my portacath removed. It's not been easy to be a front seat passenger all these months because the seat belt hits the lump on my chest where my port is.

I haven't had much chance to talk about the loooong journey I've taken up to this point. I was considering a California team of surgeons for my next procedure. But since we seem to be back at a relatively simple place in my treatment —nothing drastic is going to happen — I decided to have this at home and recuperate in the bosom of my family.

Well, off I go. See ya on the flip side.

Crucifixes and Cancer

2008-08-19T05:31:00.000-07:00

Oops, there's a few people who don't know my surgery is not today. It's next Tuesday, Aug. 26, at 12:30. Dr. Solemn will be doing the re-excision of the tissue, and Dr. Impossibly Handsome will be prettying up what's left over, immediately after Dr. Solemn is done with his work. It's a day surgery — I'll be home in my bed that night.

The reason for the delay is, Dr. IH changed the venue to the Big Imposing Catholic Hospital (BICH), and I was not made aware of this. I told Dr. Solemn's office I just can't be involved in the Catholic health care system unless it is a matter of immediate loss of life. So they changed the day of the surgery and returned it to The Other Hospital — where it was supposed to be in the first place.

I visited a breast cancer patient at the BICH in July. She had just had big surgery and was out of the ICU and recovering in a regular room. There's new construction going on at BICH, and we could hear every power tool the crew was using. The crucifix on the wall of the room jiggled while they worked. If I'd known her better, I would have offered to pull it down and stick it in the trash. I don't know what happens when you remove a crucifix at BICH. Maybe they don't let you.

Anyway, this issue goes very deep for me. I was raised a Catholic. A churched and confirmed Catholic. Not the yeah-my-grandmother-never-missed-Mass-but-the-rest-of-us
-only-went-drunk-on-Christmas-Eve kind of Catholic. Add this to a family history of breast cancer, and it makes for a transformative experience, let me assure you. BICH does help out the poor with health care, and I've even contributed to that fund. But it doesn't mean I have to let them be part of what happens to me.

Cancer On 120 Grams of Protein A Day

2008-08-16T10:42:00.000-07:00

When I was pregnant, my diet wasn't good. The What To Expect When You're Expecting, superior-type granolas would not have approved! But I was very scrupulous about my daily vitamins, extra folic acid, and calcium. Almost the day after I had my baby, however, my discipline toward supplements dropped off to nothing. With the pressure of gestating a human off me, I felt free to slack off.

Even before my cancer diagnosis I had returned — somewhat happily — to a new regime of taking supplements for so-called brain health, mostly vitamins and some amino acids (like tyrosine and GABA+). When I was diagnosed, I snagged an appointment with Mr. Sought-After Nutritionist, Ph.D. Sought-After added some things to my regimen, namely taurine, glutamine, CoQ10, and melatonin.

Taurine is one of the things in the energy drink, Red Bull (ew).

Glutamine powder, mixed in a small amount of water, supposedly grows a barrier on the gut and helps with neuropathy (tingling in the extremities). I know that when I was on chemo if I missed one of my thrice-daily doses of glutamine, my burned-from-the-inside-out feeling got worse. I never had any mouth sores nor any neuropathy, which are common side effects of chemo. Glutamine has the texture of that same grit they use to polish your teeth when you go to the dentist, but very little taste. It doesn't stay in suspension very long, so it helps to down it fast from a tiny Dixie cup. My brother called it booger juice, but it really didn't bother me to use it. Its benefits were so noticeable.

CoQ10 supports the soft tissues and protects heart health. High quality CoQ10 is not cheap. I had to avoid it and my vitamins the day before, the day of, and the day after a chemo infusion so as to not interfere with the cancer treatment. My heart used to be healthy before they gave me chemotherapy and I'd like to think it's still all right.

Melatonin had kind of a heyday about 15 years ago or so as an insomnia fighter. It doesn't cause drowsiness. It seems to work by sitting on estrogen receptor sites and cuts down on estrogen in the body. Estrogen keeps women awake at night, and it fuels tumors.

I also added DIM, another supplement that has a role in estrogen processing. It's not cheap to use it, either. Luckily, our health plan offers a discount on this particular supplement.

My new regimen also included a low glycemic diet, which indicates no tropical fruit or white flour. No salads made of leaf lettuce — too dirty for a person with a compromised immune system. Add 8 oz of a processed tomato product every day — lycopene fights cancer. Eat 120 grams of protein daily — all kinds, all sources, including red meat twice a week.

This last one was much harder to do than you would think. For example, 8 oz of red meat only has about 64 grams of protein. You still have another 60 to go. Eat a pound of steak, then? Maybe not. Check the nutrition information on a food label some time and you can see how difficult this really is. I'm pretty sure I mostly did not ever get up to 120 grams of protein every day. I bet I got half of that. It's a pain in the neck to keep track of. I can only drink so many whey protein smoothies before I feel annoyed about it. A great protein source is that Fage Greek yogurt — 15 grams in a serving! The word is out about Fage. HEB was totally out of it when I went there the other day. But even so, you still have about 100 grams of protein to consume, somehow.

I'm talking in past tense because, with the horrid chemo out of my life and that crisis now over, I feel pretty slacker-ish again. When will I ever learn? A fellow cancer patient recently admitted to me that she, too, is often AWOL from her supplements. How much better could she feel if she would just get on board and stay there? As you can see, there is a lot of self-reprimanding we do. We have to be model patients, after all. We have to do our cancer the right way. Everyone's looking. I'm supposed to still be on all of this stuff, all the way through radiation.

I wistfully nibbled only a little salad when I was on chemo, dreaming of the day it was no longer off limits to me. I'm a little surprised that I'm not enjoying it now the way I thought I would. I nearly forget to buy lettuce when I shop now, having steered clear of it for six months. Organic leaf lettuce has gone up since I last bought it, I was kind of shocked. I'm also still skipping eating bananas, melon, and pineapple. After you eliminate something from your diet, it's harder to return to it than you think.

My taste buds aren't wrecked anymore, with chemo over, and that metallic taste is gone. But I still feel like I'm not really experiencing food the same way I did before I began to be treated for cancer. My late therapist described the condition of depression as, "The salt is gone out of life." I still feel like the salt is gone out of eating. It holds so little pleasure, not in its anticipation, nor in its reality.

Some of this could be attributable to our household's new, gluten-free regimen. But that is another story.

Yo-Yo Recovery

2008-08-05T05:28:00.000-07:00

By about noon yesterday I knew something was not right with me, but I couldn't quite believe it. I had had such good energy the week I was in San Fran, but not a lot of rest. So I thought I was just a little run down. But I went for labs yesterday and my white count is low. Waiting for the other labs today to find out if I'm low on iron or B12.

What the hell?? I thought I was on the upswing. But I'm told that recovery is more of a yo-yo than a slow climb up Nob Hill (see right).

A Reply

2008-08-03T14:40:00.000-07:00

From a friend, in reply to my query:

I think I would feel somewhat bemused and mostly cheered up. Having recently been in the position of uncovering and having to move my old journals I think I can say that I have recently found the same thing to be true. I thought I would be horrified at that girl and her emotional excesses, but I found she is still right there, and basically I am happy to have found out that I am still that girl. Or maybe I am finally learning to stop caring what other people think so much.

Walking On Thin Ice

2008-08-02T06:32:00.000-07:00

Everybody knows this Yoko Ono song, right? Elvis Costello covered it many years ago but I cannot find that version on iTunes. I don't know the lyrics. Maybe it's not really about walking on thin ice.

But that's what I'm thinking about as I contemplate my next move in my treatment. On July 10, I went to see Dr. Popular to discuss my scans. His office had phoned me and told me they were clear, but I thought, hey, this is worth more than a phone call. Let's talk. He tells us that the CT and the MRI did not show any evidence of residual cancer and the bone scan is clean. They can see my prior surgeries and my gall stone (yes, isn't that yucky? I have a gall stone), but that's it.

Huh, I say. Okay. I guess I still go get surgery anyway. Yes, he says.

The next day we go see Dr. Solemn, the surgeon. He needs a new nickname. He comes into the examining room and he's animated, excited, bouncing off the walls. This is great! he exclaims. Your MRI is normal, your CT is not suspicious, this is all as good as possible!

Yes, but … what is YOUR deal? I'm thinking. He leaves the room so I can take my top off and my husband and I briefly confer over Solemn's new demeanor. "I guess he's just being upbeat but doesn't want to go, 'Hey! When are we doin' that mastectomy?!'" I offer, as I pull on that adorable capelet thingy. Still, we can't understand his behavior. I've got cancer, for Pete's sake.

Solemn returns eventually (he's taking and making phone calls outside the room, he's a busy guy) and examines me and tells me he feels no masses in either of my breasts. That's also great. I get dressed again, and after a while he comes back in the room. He suggests I consult immediately with the radiation oncologist. He says there's no advantage or disadvantage to doing surgery after radiation. But I could have my lumpectomy (partial mastectomy) anytime and a plastic surgeon can clean up the tissue …

Wait, we say. What? We thought we were in here to talk about my mastectomy and, well, we were gonna go all the way here and make it a bilateral (that's the term, NOT "double mastectomy") and be done. I have cancer, and I was told it was not good. I had a tumor that was over 8 cm in length, kind of a cigar shape, and I had a tiny bit of cancer in my lymph node. We talked about this in January when we first saw you, Solemn, and again in April. This is what we thought we were going to discuss today.

Whatchu talkin' bout, Willis???

Oh, you can still do that, he says. But a partial mastectomy is no better or worse than a total mastectomy. Solemn/Willis tells me my risk of local recurrence is low (4-6%) and a new recurrence in my other breast is also low. He tells me a bunch of other stuff that I stop listening to because I am stunned by this new information.

Okay, I say, cautiously, What you're saying is, I have options. Yes! You're in the best shape you can be, he says. Does this happen to a lot of people? I ask. No, he says. And then tells me to see the radiation oncologist and consult a plastic surgeon and formulate a treatment. We stumble out of the office in a daze.

The next week we meet the radiation oncologist. I need a clever nickname for him. He wears no dress shirt and tie, no jacket, no starched medical coat with his name embroidered on it. Just casual. It would be easy to mistake him for someone who just works there, not the doctor. He's kind of hilarious and quirky. He looked at my personal info, noted that I put down one or two alcoholic beverages a day as my consumption rate and winking, says, "Ah, good. You can't be an alcoholic if your doctor drinks more than you." Unlike Solemn/Willis, he prefers I get surgery first, then come to radiation. He thinks I will need 28 treatments of radiation to my lymph nodes and tumor bed. I will need 10 more treatments if, for some reason, I still do not get negative margins in my next surgery (that means: if they still find cancer cells in my excised tissue, even though I am supposed cancer-free).

Thus, the overworked thin ice metaphor. Apologies to Yoko.

Lurkers, Awake!

2008-08-01T14:40:00.001-07:00

Okay, you lurkers, you interlopers. I'm going to ask a question, and you better answer! Either on the blog, or by email, or phone, or pen-and-parchment.

How would it make you feel if you knew (and had written proof) that the things you think about — your job, your creative life, your family, your friends, your home, your health, your travel, your WHATEVER — basically don't change? That whatever you thought or said about any of those things years ago is the same thing you would think or say now? Would you be bemused, depressed, or cheered up? What would you do with this not-new information?

Tell me, because it's important.

"You Don't Look Sick"

2008-07-25T07:13:00.000-07:00

This is meant as a compliment. I have learned to accept it as one. I know I thought Cancer Patients were supposed to be ashen grey, swathed in a pashmina, and coughing roughly into a bandanna. I've had some hyperpigmentation in my skin, but the very thought of being wrapped up in anything heavier than a Kleenex brings on a hot flash. Other than that, yeah, I don't look sick.

I have begun to get compliments on my "haircut." My hair's light grey now, and coming in wavy. I look very punk rock. It looks bad ass. People who have known me from "before" are taken back (in a good way). Still I cannot resist telling them, "Yes, they give you this hairstyle free when you get breast cancer."

This is what I told my beloved sewing teacher, Sandra Betzina, when we met again this week at the San Francisco Sewing Experience. Sandra is one of the loveliest people I know, ever. She is so generous, not just with her considerable sewing knowledge, but with herself. "You look great, kid!" she exclaimed. We were trying on her garments, ones that she has made (or her assistant has made) from her own Vogue patterns. It lets us get a feel for how the designs fit and whether we want to attempt them or not. Sandra has a new jean jacket pattern, one that's a lot less mamaw than other designs.
She had one in a stunning dark denim, and one in olive leather. That's right, leather. You can sew that on your home sewing machine. Well, I was loving the leather one, and made a lot of jokes about how I was gonna just keep it for myself (everyone does, everyone wants Sandra's garments for themselves, they are so beautiful).

The next day she came in for class and said, "You know, I was thinking about you last night. You've had a hard year. Why don't you just take that jacket?"

So when I'm rocking that jacket in November, you will know where it came from. Membership has its privileges.

Post Chemo Wrap Up

2008-07-22T07:13:00.000-07:00

My last chemotherapy infusion was June 11, followed by a week of the worst health I'd had since I'd started treatment. My fatigue and ennui was overwhelming, it was very shocking. I'd come home after labs on my birthday, intending to reward myself by working on sewing, but instead I plopped down and watched the The Retro Network (Rockford Files, thanks for asking).

After more Neupogen shots, my condition improved dramatically and we took a Vacation From Cancer, an Alaskan cruise. I'd never been on a cruise ship before and that was fun. The pace on a cruise is verrrrry slow and that's what we all needed. Alaskan scenery is stunning. We wore warm clothes a lot. We have a little movie of it, if you want to see it.

The week following that, I had to immediately return to The Job and get my scans — a CT, a bone scan, and a breast MRI. Here's a tip for you if you're getting a CT: if you tip your head back, back, and pour barium smoothie "shots" from a small Dixie cup down your throat, it's a lot easier to deal with (as opposed to trying to "drink" it). Also, my barium had gotten a little frosty, so it was a slushy texture — also made it easier to get down.

An MRI is a funny deal. My mother-in-law always begs us to never let anyone put her in a MRI chamber, but with a breast MRI, you're face down and can't see anything anyway. So I close my eyes and just listen to the techno sounds of the machine. I swear it's true — someone out there has probably found a groove based on the sounds of an MRI.

None of these things are painful. The worst part, including the chemo infusions, is forcing yourself to go to these places and have these things done to you. It's so strange. You are there under duress, and yet for all appearances, you are there voluntarily and happily submitting yourself to whatever is in store. It's actually your decision to be there. You can't know what this feels like until it happens to you.

Where did she go?

2008-07-21T08:30:00.000-07:00

Long silence, yes?

Lot to catch you all up on.

For now, just know that I am in my favorite place — San Francisco — doing my favorite thing — sewing. I am in the company of new and old friends and I am very well.

Acupunture

2008-06-19T04:57:00.000-07:00

Here is my theory about why acupunture works: For up to 30 minutes at a time (back, then front) you have to remain perfectly still while lying on a padded table. Tinkly music is playing softly in this darkened room. You have some of your clothes off. Your central nervous system begins to power down and you doze off. Soon you are dreaming of your daughter's laughing face.

Presents

2008-06-17T20:29:00.000-07:00

Everyone knows what I got for Christmas last year: cancer. Today was my birthday, and on this occasion I got neutropenia — low white blood cells. We're talking 800, people. "Normal" is between 4,000 and 11,000. Below 1,000 and it's "oh, shit." So, as when I was getting Taxol, I received a Neupogen shot today and will get one tomorrow. The day after that I get my counts checked again and they should be better.

The main effects I'm feeling are: I tire very easily, my concentration is poor, memory is dullish, and my hands and legs swell up.

Last Treatment Today

2008-06-11T10:44:00.000-07:00

Today is my last treatment of chemotherapy. I'm typing as fast as I can before my brother gets here to pick me up. I am very glad this is the last time I have to overcome my natural urge to simply run to the airport instead of going to the infusion suite. I'm supposed to get a T-shirt from the cancer center today, but if they don't give me one, that's okay. I'll still be able to remember that this happened to me.

My Left Everything

2008-05-29T08:44:00.001-07:00

Everyone has a dominant side of his/her body. Left or right. Even those with the most physical skills and strong proprioceptive sense, such as dancers and athletes, must coach and coax the sides of their bodies that aren't as willing to play.

My left side is not strong. In 1984, I was working as a waitress and lifted a large tray of food onto my left shoulder (I knew it was too heavy for me at the time). I felt something in my neck/back go, "SPRONG" and I was shot with pain immediately. I had no insurance or money, my parents lived out of state and would not pay for me to go to the doctor, and so for a month I lived and worked in intense pain, mitigated only mildly by a medication that had just arrived over-the-counter, Motrin. I've had many flare-ups of this since then.

In 1989, I was T-boned on the left side of my car at the intersection of Mopac and Lake Austin Blvd. The driver was a personal injury lawyer who drove a gold Porsche. He's still around. He admitted guilt on the spot and avoided a ticket. Actually, he did everything he could for me, short of buying me a new car (which is what I needed, broke-ass as I was). I had a sprained neck, very stiff and sore, but otherwise I didn't think I was hurt. Everyone said at the time that I should have sued the guy, but I knew I was too unsophisticated, poor, and without status to have prevailed in litigation against this man.

Through the years, my condition did not improve, especially on my left side. In about 2003 I sought the help of another doctor, Dr. Jerk. Jerk had just come from attending a press conference, where he'd been interviewed as though he were a movie star about his role in saving the life and body of a prominent sports coach who'd been in a terrible automobile accident. Jerk thought a lot of himself. He sent me to six lame-ass sessions of McPhysical Therapy and when I did not get better, he was ready to inject my muscles with something that would maim them and not bother me anymore. Obviously, I refused. I have been to two more physical therapists for this condition and I am back in treatment (and pain) again.

In about 2002, I had been in a NIA class (something I cannot do with a straight face now) and shortly after, my left knee gave out from under me. It was determined that I had a "tear in the anterior horn of the lateral meniscus,"and I went into PT for that. It's still not as strong as it should be. At that same time I entered Feldenkrais, and that's where I learned that I don't engage the left side of my body as I should, I don't get as much input or feeling into it. I just sort of drag it along, and that's why I got hurt.

When I was nursing, I developed a infection in —where else?— the left breast. I had the problem for at least a month before I realized it was not going away.

So I suppose I was not terribly surprised when my left breast came under attack in December 2007, and here were are today.

Got Knockers?

2008-05-27T12:02:00.000-07:00

One of many unpleasant images I associate with getting school lunches as a youngster is, the way they would portion out the food. They would get one of those 4 or 6 oz. ice cream scoops, plunge it into the pan, scrape it noisily on the side to pack and level the serving, and with a "crick" of the scoop, a half-sphere of the food (mashed potatoes, say) would be deposited on your Melamine tray. Only the diner could break this food formation with his or her fork. Yum.

And that's what some of these ladies' new knockers reminded me of, when I looked at photos of them on the plastic surgery clinic Web site: two scoops.

So my encounter this morning with Dr. Deacon (for he reminds me of a church deacon — still wearing his class ring, and everything!) did not surprise me much. I was cheered to see that his nurse had a few lines on her face, so to speak. But on the way to the examining room she asked me airily, "Did you ever wear a wig?" (Like, why aren't you wearing one now? Don't you care about how you look?!) I replied that indeed I had worn wigs from time to time, but now that it's 94 degrees every day I am going without. I am on chemotherapy and everyone needs to get over it. Yes, I really said that.

This office had much more of hotel spa atmosphere, and with spa robes to put on, to boot. Unfortunately, the robe was not on me very long. I spent the bulk of my appointment with Dr. Deacon with my top off, even when he was not illustrating on my body the procedure he would do. My notebook was out of reach for the majority of his stump speech to me. Bam, here's what ya get, lady. Dr. Deacon likes to do a procedure that involves rethreading your latissimus dorsi muscle through your armpit to create a breast mound, and he likes it at the time of mastectomy. I pretended I had never heard of anything he was telling me, and he did asked little of me (such as, "Are you with me? Do you understand?"). When I asked what I would do without my lat muscle anymore, he told me other muscles are there to help out, but I would not be able to reach all the way above my head and pull my arm down anymore (like in those lat exercises at the gym). Beauty. I truly began to feel nauseated at that point.

His office staff asked me on the way out if I wanted them to call Dr. Solemn so they can co-ordinate the surgery with him and I told them I am not making a decision about this today.

But my feeling has always been that I am fucking using my back muscles right now and they are not modular portions of my body. What's more, my left side is involved here, and that's another post altogether.

An Era of Reconstruction

2008-05-20T07:59:00.000-07:00

When a woman is facing a mastectomy, as I am, she inevitably also considers surgery to restore the piece(s) of her that will be gone because of cancer.

Yes, I'm talking about visiting plastic surgeons. Is this TMI? I don't think so. Even if you are not saying so, you are wondering a little bit about it, too.

Yesterday I glided into the gleaming offices of Dr. Impossibly Handsome (IH), a plastic surgeon of good repute. He had been referred to me by my general surgeon, Dr. Solemn. Solemn, knowing my queasiness about those who practice the cosmetic arts, had given me a rather short list of dudes — and they are all dudes — who take breast reconstruction very seriously.

Dr. IH seems to be one of those, and told me the majority of his breast surgery is reconstructive surgery — music to my ears. I have no wish to place myself in the hands of a man who pads his bank account fueling the desires of women who are insecure about their racks.

After a long conversation about my option (yes, according to him I have about one option), it was time to uncover the raw material he would have to work with, whenever the day comes. It felt like being in a very boring episode of that plastic surgery show, oh what is it? Nip Tuck. It is a very different experience to be examined for cosmetic purposes. I did get a nice but medical-sounding compliment on what's already up there, considering my age and the fact I had children. And the greatest news of all: I have plenty of belly fat that "would make two nice breasts." Yay, Dr. IH. He knows what broads want to hear.

I looked at his nurse and said, "You mean this would be gone?" gesturing to my abdomen. She nodded vigorously.

Now is a really good time to think carefully about how and if physical "wholeness" means anything for wellness. I'm not sure they are necessarily partners but I know yesterday's visit made me start to think about putting them both on Team Roseana's Cancer.

Justification and Reconciliation

2008-05-18T06:03:00.000-07:00

I bet you wonder, as I used to, about what happens to those relationships that were damaged before your cancer diagnosis. Do people who were mad at you suddenly go, "Oh, hey! So sorry you have cancer! Let's just forget that other thing we were pissed off about. It doesn't matter anymore."

No, they don't.

I attended an event recently where I came into contact with folks who had reason to be irritated with some of my past actions. And vice versa, I might add! This was a joyous, social event with everyone all dressed up. A time for pleasantries. So there was no reason for us to remind each other of our past wounds or differences. It was a time for, "Hello, how have you been?" But neither pleasantries nor accusations came my way, nor even an acknowledgment that I am ill and how awful that a mother of an elementary school-aged child has Stage III breast cancer, and how is that child doing? These people are still mad, even though supposedly their situation is fine and dandy without me. No, no, it's better without me, dammit.

I suppose what this really means is, when the veil is torn off a situation or person, it is gone for good. Cancer or no cancer. I wanted to be reconciled to these people for just this one day, not necessarily forever. Instead, I was reminded that I had already been justified. Remember, justified means to set right. I was already set right, regardless of my illness. And that's a situation that seems to be permanent. I knew this already, deep down. I will try not to forget this again.

B Team

2008-05-14T20:07:00.000-07:00

Update: My little plan to foil bumbling lab techs failed today. This time, a tech I'd never had before missed my arm vein. Guess what? Blood don't come out like that. She was even moving the needle around to see if it would flow or not and that's when I figured out I was screwed. She removed the needle and got someone else, who turned out to be Lab Tech #1 Who Could Not Access My Port Last Week. She could access another vein, however. It's big, but deep. Ow. And I've got a bruise on the inside of my arm. The port went okay though.

Ports of Call

2008-05-14T09:08:00.000-07:00

For the uninitiated, I have what's called a porta-cath in my upper chest. It's a Power Port, specifically, implanted under my skin just beneath my clavicle. My surgeon did it in January so I could start my treatment. I really hated this idea desperately. But the surgery was no big deal — I was eating potato, egg, and cheese tacos at Loca Maria's by 11 am the day of the procedure, and the pain management from the incision was minimal. Here's what it looks like.

About an hour or 45 minutes before each infusion, I apply a thick layer of numbing cream over the spot and cover it with a small piece of Saran Wrap. When I go get my treatments, the infusion nurse (or more recently, the lab tech) feels the spot where the port is and pushes into it a short needle that resembles a push pin. That's what starts the "line," as opposed to an IV in the arm. The reason for the port is, the chemotherapy medications are very scarring to tissues and having a direct path into the body's biggest vein is better. You don't want your arm veins to get scarred. They're small.

Overall, I've been pleased with this arrangement. The port rarely bothers me and I don't feel it all — unless some joker decides she's gonna push on it. Somewhere down the line I must have heard some wisdom about never letting the lab techs touch your port, only let the infusion nurses start the line. So until recently I had the lab techs do their blood draw out of my good arm and the chemo nurses access the port. But one nurse once told me, "Oh, no, the lab accesses most of the ports, we don't do that many. But we'll do them, it's good to keep up our skills." Huh, I thought. I thought you guys had the mad skills.

Week before last I let the lab tech start the line in my port and it was fine. Last week, it was not fine. One tech began to really push on the spot, hard. I winced. She still couldn't figure out where the hell she was supposed to jab me with that fancy push pin. Finally she gave up and punted to another tech, who seemed similarly uncertain and not gentle, either. He put the needle in — oops. Not the right spot. He took it out and tried again. This time it worked. I had to go into my doctor's appointment with my chest irritated like this. I ended up with a bruise there.

I still had this contraption taped to me when, an hour later, I was downstairs for an ultrasound. I have been having a swollen feeling in my tissues, especially in my armpits and chest, so they checked for a blood clot. I don't have a blood clot. But at least I got in a nap while I laid in that dark room, getting probed with that warm goo on me. I'm going to go back to my first tack today, and get my favorite nurse to deal with my port.

Halfway Through Taxol

2008-05-07T08:49:00.000-07:00

Last week I had my 6th infusion of the drug Taxol, so I am now halfway through this portion of my treatment. I'm going in for Number Seven today, in an hour, in fact.

When he learned of my condition, one of my ancillary health care providers seemed fascinated that I had "chosen" chemotherapy. It's the only thing they got for me, I replied.

Well, yes, in the Western medicine world, it is, anyway, he replied.

I would like to point out that in his realm of health care, there is no vaunted, alternative way of doing what he does. No herbs, meditation, fasting, colonics, organic raw foods, or wishful thinking. He can only do what he does with his hands, and there is no better training for his profession than in the Western world.

So having to defend my "choice" seemed pretty messed up to me. Being made to feel like a sucker for getting chemotherapy seemed pretty messed up to me. I am now very curious about others' emotional investment in whether — and to what degree — I have "bought into" Western medicine means for them.

"This is getting old"

2008-04-25T05:48:00.000-07:00

That's what my brother says almost every time he takes me for chemo. That, and, "This is bullshit," are his two favorite comments. We were waiting for Dr. Popular to see me before my Taxol infusion yesterday. There is nothing so sobering or grown up than this experience. You think buying a car, or a house, makes you a grown-up. No. Making decisions like these makes you grow up.

The doctor let me know my white counts, while not dangerous, are getting lower every time I get Taxol. Now I have to go twice a week for a shot of Neupogen, so the white count doesn't drop so low that I am not well enough to get chemo. Now that's three times a week I must go to the Cancer Volcano and look in, dammit.

You know that expression, "Dum-dum-dum 'on steroids?'" Now I know what that is like. On steroids. It is crazy. It is hateful.

I forgot to mention for the last three treatments I was on just 2 mg of Decadron, as opposed to 20 mg during infusion, plus the massive oral doses I was taking. This has made a big difference, although I still don't sleep well for several days after infusion. By Monday, I am at my nadir and have experienced a big crash. My hip joints are a little sore, and I think this must be due to my white blood cells attempting to fight against the toxin currently streaming through me.

The Follicle Files

2008-04-22T07:15:00.000-07:00

Don't fib. I know you want to know. "What is the hair situation with her, underneath those dreadful bandannas and that wig?"

About a month ago, I noticed little sprouties of white hairs peeking through my scalp, as my A/C regimen was ending. There's a bit more fuzz now. It mingles with the tiny, short pieces of dark stubble that's still clinging to my skin from when I had my husband shave my head. The stubble was a real problem, as it clung to headwear and irritated me when the follicles got rubbed the wrong way.

Finally, I slathered a washcloth with Clarins skin cleanser in the shower and rubbed my scalp with it, which removed most of what was still hanging around. But at no time has my scalp been 100% bare. Right now I look — and feel — like Zippy the Pinhead. No one other than my husband and child have seen me with my head uncovered, and I only started doing that about two weeks ago.

I feel practically no need to say much about the "other hair," not being of the generation that grooms it so. (I REALLY want to know where this obsession originated.) I stubbornly had not waxed my legs since December, hoping that hair would rub off when I bathed, but nothing doing. I broke down and waxed my legs about three week ago, and they seem to be staying relatively hair-free for a while.

With Taxol, Dr. Popular said I "shouldn't" have more hair loss, like my eyelashes and eyebrows. Ha. My lashes are getting very sparse, as are my eyebrows. This pisses me off, as my eyelashes are one of my "things," a thing I was born with that I really like about my physical self. A friend who has had treatment before said, "I felt like David Bowie in The Man Who Fell to Earth." I'd like to amend that to read, "I feel like The Woman Who Fell to Planet Cancer."

A few nights ago I had a dream that I woke up, ran my fingers through my scalp and found that all of my hair had come back, exactly the same length it was before all of this crap started to happen. I felt relieved about it, but I also felt a loss, and wondered if I'd made the most of my time being bald. More about this struggle in another post.

Worshipping at the Temple

2008-04-17T20:26:00.001-07:00

Whole Foods is the temple, I've said before. If they don't got it, you don't need it, especially if you're a patient.

Most people who know me know that I am an accomplished homemaker, when I am really on my game. I clean, cook, sew, garden (used to), repair things, and raise children with the best of them. I still believe Martha Stewart is a bloody genius for creating an empire around this pursuit. I wish I'd understood as she did that there was big money to be made if you were smart and ruthless about it.

Anyway, especially in the early years of my marriage, when I was child-free and pinching pennies (anybody remember TRIPLE COUPON DAYS at Tom Thumb? I say, give a shout out for triple coupon days!), I cooked at home a lot and liked to try lots of recipes. The grocery store held lots of interesting possibilities, even though I was on a tight budget. What could I do with pork on special? How to improve beef stew or pot roast? Make salad dressing, don't buy it (too expensive). Make desserts, don't buy them (cheaper and better tasting). I rarely bought convenience items (too expensive, probably unhealthy, not as tasty). Everything started pretty much from scratch, whether I was making chicken salad or Thai curry paste. It's the self-sufficient, DIY nutjob in me. It's better that way. It's cheaper. It's more pure.

Today it's a little different. My friend K says, "I love to cook but I hate having to cook." I was already in this camp before cancer, but now I'm in another country altogether. Now when I go through the grocery store, each aisle seems to hold nothing but bitter judgment for me. I look at ingredients and think, "I could make this-and-such, wow, it would be fantastic," and then quickly remember I am not a) a newlywed, and b) I have no physical energy to engage in the kitchen projects I once did. I can't be on my feet that long anymore and it would wipe me out if I were.

So I scout out the easy-to-make and ready-to-eat items and hope for the best. Whole Foods' egg salad is delicious (I could make it myself SO cheap! grr) but the chicken salad contains dark meat as well as breast meat, a combination I do not find palatable (again, my own preparation is my favorite). Boiled shrimp is very convenient, a great protein source, low in calories (but doing it yourself is way cheaper). Frozen items still disappoint me, like frozen hamburger patties.

More than all this, getting all Martha on everyone's ass doesn't feel like something I need to do right now. If everything goes the way I'm told it will, I will have many years left to clean my stove.

Halfway There

2008-04-17T19:36:00.000-07:00

Today I received my fourth infusion of the drug Taxol. I've had four infusions of A/C (if you don't remember what that means you can look here), and now four treatments of Taxol. I have eight more rounds of Taxol to go. I've been in chemotherapy since January 21. I go once a week, on Thursdays at 1:30.

I have a favorite nurse at the chemotherapy suite, but I don't always get to sit in his station. Today I didn't get to. I had the worst seat in the room. If we were on an airplane, my seat would have been the one right by the lavatory. My LaZBoy of Doom was right next to the entrance, my IV stand perilously close to everyone's path and there are a lot very old and sick people shuffling around.

There are 4 or 5 stations in this big room, and each has four chairs that face each other in a "pod," like group therapy. Other than the time the spouse of another patient decided to blare the TV (Awakenings was on), I've been pretty lucky. I did once refuse on my 2nd Taxol to get treatment in a station that had TV going. Daytime TV is just the worst, such a depressive habit to get into. I know. I was a habitual soap opera watcher (Guiding Light and As the World Turns). I had to quit it cold turkey, like cigarettes. I've never looked back, and I'm far more productive with these 10 hours a week than I was in front of the tube.

Anyway, today there was this OBNOXIOUS ol' guy who would not shut his mouth. He thought he was hilarious. He thought he was a hellava guy! You know, salt of the earth. He orated in booming tones about his ranch, and culling coyotes on his land, how we should turn on the TV to Oprah ("she might have her boy Obama on there"). He talked to my favorite nurse about my nurse's upcoming nuptuals. Nurse intends to take his bride on a surprise honeymoon, perhaps to the Caribbean. Cowboy advised, "Well, tell her she'll have to speak with a black accent, only with an English accent. That'll freak her out."

Oh yeah, it was like that. That sumbitch jus' had to be runnin' his mouth. It was worse when he took a phone call.

"Yuh, gettin' chemo. They givin' me mah rat poison. The rat's dead now," he shouted, and I thought, "Naw, he ain't, he's still talkin." Even through my high tech earplugs I could hear this bastard yapping. For a while he had an audience — another couple close to his and his wife's age were in the seats next to him. That was even worse. Finally, they stopped torturing him with chemo and he left, he stopped torturing me, and I dozed for over an hour, waking a little every so often to my own snores.

This Side of Dirt

2008-04-03T10:56:00.000-07:00

Yesterday I was on the phone with a man of my fond acquaintance, talking about the upcoming business we are to do together. He has had health issues that make mine look like a hangnail. We're talking organ transplant, lymphoma, and more. He asked how I was. I told him I was fine, but that I was very tired of being a patient and I knew I didn't have to explain that to him.

"Well, we're on this side of dirt," he told me.

A Vacation From Cancer

2008-04-01T08:47:00.000-07:00

"Mom, when you're done with this stupid chemo, we need a vacation from cancer."

Out of the mouths of babes, right?

Yes, we DO need a vacation from cancer, my goodness.

I had a bit of a respite this weekend when my friend came to visit me. (I'm not sure what she was expecting — holding my hand at my bedside? It's not that bad, believe me.) I had really looked forward to her visit and we had a great time seeing each other and catching up with our other two pals. Doing the Sunday South Congress thing, hanging out, ending at Casino El Camino for Buffalo burgers (a high protein item that comes on a whole wheat bun and you can even get these yummy oven roasted tomatoes — who knew??). It was a mini-vacation from cancer.

Taxol is ZZZZZZZZ, Decadron is ZOW

2008-03-24T17:12:00.000-07:00

Taxol infusion went okay today. With 50 mg of Benadryl in my IV drip, I conked out fast. Put in my ear plugs and put on my sleep mask and everything. Roland brought me poached chicken, a protein smoothie, and an orange for lunch.

Psych.

I had a Coke from Hill Bert's and an order of the crunchy tacos.

Came home about 1:30 or so and I went back to bed for 2 more hours. That super rest, combined with the Decadron high (I had 20 mg at home, then another 20 more in the IV) has at this moment turned me into a housewife cyclone. I went for a 30 minute walk, assembled dinner, am now doing laundry. Yes, I just had chemo today. The only immediate problems? I will probably not have a good night's sleep tonight and will experience a crash from coming off the Decadron. Maybe I'll clean something with a pile of Q-Tips, then organize family photos. That ought to bring me down to earth again.

Compliantly Going to My Doom

2008-03-23T16:18:00.000-07:00

I am being a compliant patient and I took my 20 mg of Decadron this morning because Taxol starts tomorrow …

It is a corticosteroid. I have to take it because it shrinks tissues. The new cancer drug I'm going to start, Taxol, is effective but can cause allergic reactions in some people. Decadron is making me feel awful. Jittery, headache, joint pain, pain in my glands. I took an Ativan but it did not help these symptoms.

Post-AC symptoms include great hunger/small appetite and that ear wax taste in my mouth all the time. Inability to use my power toothbrush comfortably. I had this need to prove to people that I'm not lying alone in a dark room, coughing up blood into a handkerchief. So I stayed up too late during SXSW and I feel run down. Trying to rely less on prescription sleep aids when I'm not in a chemo week, so I take my GABA+ and melatonin. Sleep occurs in small fits and is punctuated with strange dreams.

For instance, I have a recurring dream about flying. I dream that the airplane doesn't have seats in rows, it's more like a flying theater-in-the-round sometimes. Well, I dreamed the airplane was a grocery store produce section, and our seats were in the middle of that. The seats were church pews (arranged in the round) with lap belts, although one lucky flyer got a seat to himself on a kind of bishop's chair on a small pedestal. Fresh fruits and veggies and church, flying, what does it mean??

I am dreading the infusion tomorrow, I don't know how I will get through it if I feel this raunchy now and they have not even gotten their hands on me yet with the new drugs, which includes a different anti-emetic this time, more steroids, Benadryl (which I hate), and Tagamet.

Lucky to Have Cancer

2008-03-17T17:39:00.000-07:00

We saw an old friend during SXSW, someone whom I've not seen for many years and we had a chance to catch up. Unfortunately for him, he and his wife are splitting up. It's complicated, he is taking a lot of the blame, but mostly, he is just very sad and does not want his wife to go. All they see are their problems and their boredom with each other, nothing is binding them together anymore.

And so he told me that in spite of what's happening to me he thought Roland and I are lucky. I know exactly what he meant. He meant we have my illness, besides everything else that's in a marriage. That renews your bond in a relationship, makes you pay attention again, makes you take the other person a little less for granted than you did before. Our friend would like to have that again. I wish him the best, even if the best involves cancer. I really mean that.

More Cancer Talk at SXSW

2008-03-15T13:07:00.000-07:00

I don't know why we all go so undernourished during SXSW but it's a condition that a so-so breakfast taco at a day party will not solve. I need animal protein, and a cooked vegetable, now, and you vegetarians can keep your ChickN and raw foods to yourselves. It won't save you, no matter what you think.

My nutritionist says so.

I just now ran into C., the woman who was standing next to me last night at X. I found her interesting, supportive, fun, and gutsy. She said, "Do your homework, make your own treatment decisions, and don't look back."

As I mentioned, C. had a Stage III tumor with 6 lymph nodes involved. She's involved in a clinical trial with aromatase inhibitors and something else, instead of Tamoxifen. She also did dose-dense Taxotere instead of Taxol. C. stayed away from vitamins and anti-oxidants, quite the opposite protocol from the one I've been counseled to follow. Her doctor gave her no sleeping pills, etc. She warned me that her flipping fingernails fell off and that other breast cancer gals said they use tea tree oil on their nails to prevent that.

Fingernails! Something new to worry about!

As she said last night, the hair loss is the worst and I must agree. I have heard many times that your new, post-chemo hair can grow back a different texture or even a different color. I will not be that lucky. My hair will grow back stick straight and dirty blonde, I just know it. If I lose my fingernails, that will make most household tasks very hard (yay! more getting out of cooking) but typing will also be a bitch and if I can't sew, well, what is the point of getting up every day? God, I hate the smell of tea tree oil. Too close to patchouli.

I have to admit that I am not in the mood to soberly face the reality that menopause, induced by my treatments and the drugs I have to take after, is going to be a fact of my life at age 45. I'm really mad at myself for not being a better caretaker of my body before all this happened. I've never been as strong as I've wistfully imagined I was, I don't have the muscle tone I would like. I don't like exercise enough to have ever made it the priority in my life. Well, now I no longer have a chance to get ahead of the Menopause Middle Abdomen curve, everything I do now will barely be maintenance of what little strength, tone, and flexibility I have.

I guess it's easy to have regrets when you get an illness, easy to place blame and say, "Man, I should have." It's also easy to think doors that were always open when you were young are now closed. I do feel like I'm standing on the side of the door that's closed. I feel like I didn't do my life the right way and now I have cancer to do, instead. I wonder if this is true or if my SXSW exhaustion is kicking in.

Cancer Chicks at the X Show

2008-03-14T23:59:00.000-07:00

Tonight's X show at the SXSW Live stage was quite transcendent, they were in top form. John Doe's and Exene's vocals were as good as ever, Billy Zoom was having his own show on Stage Right with his new Billy Zoom Tribute Model Gretsch guitar, and DJ Bonebrake was still the solid, creative rhythm of the band.

About 2/3 of the way through the show, between songs, a woman asked my bandanna-ed self, "Do you have breast cancer?"

Wow, no one has just said this to me before. "Why do you ask?" I said.

"Because I'm a survivor," she said. "Three years. Stage 3A. I was 37 when I was diagnosed."

We talked some after the show, I got her card (damn, why don't *I* have cards??) and we talked cancer.

A few moments later, outside on the street, another woman greeted me. I still don't know her name.

"Roseana!"

I could see her port, it's still in her chest, plainly visible. She had a halter dress on. Her hair was short, obviously still growing out. She was ebullient.

"I see your port," I told her.

"Feel my boobs!" she said. I did. They felt — and looked — pretty convincing. She said before, "the girls were sagging," and now with her post mastectomy breasts, they were perky.

That was 2 women in the X show, under 40, who've had breast cancer. Both strangers to me, both lifting me up and telling me, You are going to be all right, girl.

Out of the Gene Pool!

2008-03-12T08:40:00.000-07:00

Friends,

I was informed yesterday by phone that I do not test for either the BRCA 1 or 2 gene for cancer.

That is good news, as my risk for ovarian cancer is not high and my kid does not have a higher risk for cancer than the general population.

Last Thursday I got my last round of Big Red with Acetone. I have felt OK, not insanely great. Mostly, I am frustrated at meal time (stomach growls, but food offers no comfort or flavor) and wine tastes like nothing at all.

My SXSW week began immediately after this treatment, and I have cut way back on my activities this year, skipping parties and attending no film screenings, except for one. I am conserving my energy for tonight, because I will be in a (we hope) full night club selling raffle tickets for a guitar and t-shirts to raise money for Girls Rock Camp Austin. I will wear the black bob, I think.

I actually have a full music agenda, which you can look at here. Not that my anemic self can last all night, but I have an agenda anyway.

Feeling 7 Up, I'm feeling 7 Up

2008-03-05T05:57:00.000-08:00

Remember when Kevin in Repo Man was singing that in the grocery store as he stocked cans of generic food? Continuing with the soft drink theme, I'm feeling pretty good for someone on chemotherapy. It's hard to believe, I know. When I was a kid, chemotherapy was an air-and-land attack. Now, it's not quite so debilitating.

My whining two weeks ago certainly garnered sympathy. I feel I treaded dangerously close to journal-and-not-blog territory with my crying. Certainly, somewhere out there, there is another person more miserable than I am. I'm too fortunate to be that bad off. My kid and husband are too wonderful for me to be that bad off.

Last week I sewed a lot, and that's good. I made a tank top and matching shrug for the kid's birthday. The green, dog print fabric came from Stone Mountain and Daughter last fall and I'd been saving it for a Christmas present, but we all know what I got for Christmas. I also worked with one of my self-drafted patterns for a 4-gore skirt using the pink and brown tweedy stuff I got at Britex (see this link if you want to read more). The acid yellow and hot pink still awaits me, I think it's a project for my next San Fran trip. I again altered two skirts of my own making, which is a chore, not sewing, and added shaping darts to one of my vintage man's shirts. I spent time yesterday working on a sweater embellishment, something that is apparently very hard for me to do. I finally came up with a sort of Betsy Johnson-inspired thing for my boring black Lands End sweater using hot pink stretch mesh … you'll see.

All this, and balancing the checkbook, too. Of course, we are all gathered at the foothills of the SXSW mountain and that is about to dominate everything, including my illness. I often liken SXSW to a trip to a foreign land. You forget what your life "back home" is like. This year, I have an extra bag to carry.

One More Big Red

2008-03-03T05:47:00.000-08:00

My non-Texas friends will not get the Big Red reference, so I'm including an image. Once, many years ago when I was young and foolish, I had been overserved on beer and awoke the next morning to the ill effects. It seemed that the only thing cold in the fridge was Big Red and so I drank some.

Ohhhhh, gaaaah, ack. The memory of Big Red's cloying bubble gum flavor is seared on my brain forever and just thinking about having some makes me start to feel ill. Really. Wikipedia says it's a red creme soda, not bubble gum, but whatever. I can't stand it.

The deep red cranberry color of doxorubicin (Adriamycin) resembles a bottle of Big Red, so the sight of that nasty cancer drug also makes me feel like scouring out my mouth before it's even administered. I have just one more round of A/C, or Big Red With An Acetone Chaser, and it's happening Thursday. Then I have about a 2-1/2 week break from treatment before I begin the next drug, Taxol, on March 24.

The most recent infusion of Big Red went much better than the last one. I snagged David the Nurse again and he put his mad skills to work. I had much less light-headedness in the days following treatment than last time.

I felt pretty chipper when I saw Dr. Popular the Oncologist this week, joking around and showing how tough I am. After our visit, he sent me back to the infusion area to co-ordinate my Taxol schedule with the admin there. I was low on food and rest. The sight of people hooked up to IVs and the intimate knowledge of their misery went straight to my gut and head and that's when I truly felt nauseous for the first time of my whole treatment. I shuffled out of there and headed straight for Hill Bert's Hamburgers on 35th (the new one) and got one of those Cokes with the wonderful crushed ice they have, and some crunchy tacos (did you know they have tacos?). Funny how an orange and a protein shake just doesn't cut it when you're
low.

"Me" Time

2008-02-19T17:54:00.000-08:00

Sudden, scary illnesses require that you find a new way of living. You must negotiate a new normal for yourself, or else a solution will be thrust upon you. My many nice friends and acquaintances have urged me to remember to put myself first in all of this. "Just take care of yourself," they say. Yes. Yes. That is a good idea. A really good idea. I'll do that. Put myself first, and hang everything else. That's the only thing that makes sense.

But very early in this process I discovered this is more easily said than done. In the weeks preceding my first chemo round, I was subsumed daily with what I called "cancer errands." Appointments galore, and they didn't schedule themselves, either:

Going to the new surgeon, going to the new oncologist, going to the nutritionist.

Going for an echocardiogram, a CAT scan (which required advance preparation and a trip to the lab the day before), and blood work.

Going to the pharmacy to pick up all my drugs that I take at home. Going to the hair stylist to buzz off my hair. Going to the wig store. Going to Nordstrom for comfier bras. Going for day surgery to install the port in my chest. Going to Whole Foods ("The Temple," I call it) for provisions. Going to People's Pharmacy (which I call "The Chapel") for the pile of supplements I now take. Going to the chiropractor to loosen up for the battle my body is about to undergo. Doing laundry, even all the "delicate wash" stuff, and paying bills.

Surely after all that, the just taking care of myself could start. My preparations completed, I was ready for all that self care I was encouraged, nay, ordered to perform.

It hasn't really worked out that way.

Right now, because I am complaining, I feel I must guiltily and hastily affirm the help and care I have received from my brother and the fellow parents in my child's school. They do a lot of the leg work for me, picking up my child from school several times a week and taking her to the places she needs to go. The parents pack my child's lunch one day a week, and bring us a dinner once a week as well. Their care and generosity have released me from some of my usual obligations. For this I am in their debt, I do not know how I will ever properly express my gratitude. It's guilt-inducing for me to even think that despite their invaluable contributions to the war, I am still losing the Me Time battle.

Maybe it's useful to stop and imagine what a near-perfect, healing, me first life would look like. First, I would never worry about what is or is not in the refrigerator and whether I have had enough of it for today, and no conversation about it would be necessary. Next, every bit of discarded mail and trash would be stowed without reminders in its proper place. Our books, magazines, and catalogs would all have a place to live and stop competing for space on all the horizontal surfaces in our home. The bills and household business would be concluded in a few short minutes, rather than days. Laundry's done. When I am feeling energetic, the bulk of my time would be spent in daily moderate exercise and body work and of course, my sewing. I would even have time and energy for fun and frivolous things outside home (those things to be determined later).

A friend wrote me yesterday: "I have been a bit concerned that your blog has been idle. We're
hoping that means you are busy with other things besides thinking about cancer." Why yes, I was, I was shoveling paper all last week, working with my checkbook, getting ready for taxes, filing all my medical paperwork into a labeled accordion file, and looking for summer camps. I cooked dinner, I picked up the house, I did laundry. I did a little sewing on Sunday.

This doesn't fit into my picture of self-tending. This feels like I have to add cancer to my list of errands and tasks. I am failing at doing my cancer the right way.

On the A/C

2008-02-18T18:06:00.000-08:00

Old hands at the cancer ranch already know this, but the first part of my regimen is known by a shorthand: "A/C." "Are you on A/C? I'm on A/C."

This stands for Adriamycin and Cytoxan, which are brand names for the cancer drugs. They both make your hair fall out and make you feel like shit. I find the abbreviations kind of funny. In-group slang for cancer patients. What would a sociologist make of this, I wonder?

Anyway, my next infusion was Feb. 7. I had a different nurse this time who decided to give me my Aloxi (anti-emetic) in an IV push instead of in a drip. Whoa, head rush, and it was not nice, and it didn't stop for about three days. I really barked at my oncologist last week about this, I think it was just the nurse wanting to rush my treatment and get off her shift (I now have chemo on Thursday afternoons at 1:30). A lot of good her efficiency did. I had to wait a goodly while for my Adriamycin anyway, head spinning. I was told there was a new guy who was preparing the drugs and thus, the backlog (oh, yay, beautiful). Finally, I said, "Where is my Big Red? Gimme my Big Red!"

This crimson poison has been around for ages, and even a little reading online seems to say that one day the medical community is gonna back off this stuff for some folks and go to a less heinous drug. Or even skip chemotherapy when it really isn't necessary. Of course, you want to hedge your bets with something as wily as cancer, but after this last round of chemo, I kept thinking, "THERE HAS GOT TO BE A BETTER WAY."

Okay, now it is happening

2008-02-05T12:44:00.000-08:00

I know it's pretty irresistible if it is not happening to you. You are wondering, "When will she start losing her hair?"

Well, friends, that day is TODAY. It's dropping out like needles from a Christmas tree (an apt comparison because my hairs are just about that long). I'm currently containing the shedding with one of those adorable stretchy caps I bought at Pat Painter's a few weeks ago. Yes, no more pretending I am just starting a "new look" with my cropped locks. I'm Cancer Gal now.

Tomorrow I am scurrying back to Pat's so Celeste can style and clip the wig I bought there. Pat said on the phone they can finish the job with my hair, as well. Oh, it's just not going to be as hilarious as it was the first time I went in there. The first time, K and I snickered and giggled. Ooh, silly wig, sexy wig, soccer mom wig. No laughing this next time. Not funny anymore.

Cancer By the Hour

2008-01-31T20:17:00.000-08:00

8:05 am. Discussed my chemo and lack of nausea with a parent in the school parking lot.

8:53 am. Took phone call from woman who has been diagnosed with breast cancer twice. She says that having cancer gave her the opportunity to fight for her life. I'll have to think about this one. She also recommends a plastic surgeon.

Mid morning. Answered emails I had sent the night before to people at the Breast Cancer Resource Center because I should probably find a support group.

12:25 pm. Talked to a volunteer from Cancer Connection about my situation. We discussed my being paired with a "cancer buddy" who would with any luck be close to my age and have/had a child close to my child's age when she was in treatment. When asked what my ideal buddy might be like, I had the forethought to mention that although I identify as Christian, I don't want someone who's mega-religious.

1:07 pm. Talked to my friend J, with whom I had not spoken since last month. She offered to come and stay with me sometime.

Mid afternoon. Read and sent more emails about having cancer and needing support.

7-9 pm. Met with an overall wise woman and talked about having cancer and all the things I have to do to stay well during treatment, and the possible places I can get the support I need to keep house and home together.

Gene therapy

2008-01-30T20:16:00.000-08:00

Wouldn't it be great if genetic counseling really meant they could counsel your genes?

But it doesn't.

Because of my family history of breast cancer (first mother, now me), I consented today to having a blood draw to find out if I carry either the BRCA 1 or BRCA 2 gene.

"The likelihood that breast and/or ovarian cancer is associated with BRCA1 or BRCA2 is highest in families with a history of multiple cases of breast cancer, cases of both breast and ovarian cancer, one or more family members with two primary cancers (original tumors at different sites), or an Ashkenazi (Eastern European) Jewish background. However, not every woman in such families carries an alteration in BRCA1 or BRCA2, and not every cancer in such families is linked to alterations in these genes." (from National Cancer Institute page)

So, if you have this gene, it may be big trouble for you and yours. Or, not!

I do not have extended family with rampant cancer (or any), nobody's dying of it, and my great, great grandfather was a Jew, which hardly makes me mishpocha.

My biggest problem was with the little gal who was doing my "counseling" and whatnot. She is a nurse practitioner for a gyn at the cancer center. She is perhaps 30, and blonde, and chirpy. What she told me about the BRCA genes is readily available anywhere, including the Web page I just quoted from. If I'm going to be "counseled," I really need someone with a few grey hairs, metaphorically or otherwise. When I mentioned, with some anguish, that my child is having some real concerns about the future of her own health because of the present state of mine, Nurse Young and Probably Childless suggested that I teach her to "live in the moment" and help her not worry about what might happen later.

Let's not forget, the other big reason to have this screening is so offspring can plan accordingly for their own health care. I wish I'd known that the major component of this was to "learn to live in the moment" so I didn't have to bother with this tiresome conversation.

We also discussed removal of my ovaries, if I roll craps on this thing again and come up positive for the BRCA 2 gene. I mentioned how unexcited I was about this, and Nurse Young pointed out that in five years I'm headed for menopause and will be losing hormone production anyway. That and the fact that I will be on Tamoxifen pretty much washes me up in the feminine hormone league.

So, to review, live in the moment and get used to the fact that I'm not going to enjoy the substance that makes me a woman. Good to know.

The lab people test my blood the "Jewish" way first and that takes 2-3 weeks. If I'm negative, they run it again like the rest of the goyim and that takes another 2-3 weeks.

Chemo Week One is done

2008-01-28T07:35:00.000-08:00

Here is what happens in chemo.

First, I am somewhat lucky because my infusion only lasts around 2 hours, all told. Some people with other cancers have to be in infusion for 7 or 8 hours at a time.

The room where I go has wall of windows that face 38th Street. It's got several 4-chair "pods" of these really comfy chairs for you to sit in. Each one of these is paired with a chair for a visitor. It's less comfy. It's not a great place, all fluorescent and mamaw. I'd kill for an incandescent light source. I'd kill for some privacy, too.

Before I go, I take some drugs. First, Emend, to prevent nausea. Good stuff. On top of that, I take an Ativan. I call it a calm-the-fuck-down pill because that's what it does. As we all know, part of throwing up is getting scared you're going to throw up. You don't get scared of being nauseous when you're on Ativan. My doctor "prescribed" Benadryl on top of that, but I didn't want to be drowsy and cotton-mouthed for Pete's sake, so I didn't take it. I put on Emla cream on my chest where my port is and cover that up with a bitty piece of Saran Wrap. That numbs the skin so I don't feel any needles going in there.

My nurse, David, was so skilled I'm not sure I needed the Emla. The thought of having this was freaky — a lickety split way to get to the biggest friggin vein in my body to give me drugs — but I am very impressed with this system. David made it look easy, so I relaxed almost immediately. He started with a bag of saline, then gave me Aloxi, another anti-emetic. Then, as though he were presenting me with a bottle of wine I'd ordered for dinner, he displayed for me my giant syringe of a cranberry-colored drug called Adriamycin. I read a few days later that doctors have a cute nickname for it: "the red death." David plunged this into my IV. I felt like I was being fumigated, and indeed, due to Adriamycin's toxicity, in a way I was. Last, I was given a bag of Cytoxan, another vicious cancer killer. Near the end of this infusion, I got a major head rush. David said to tell the nurse next time to do this infusion more slowly so I don't get dizzy.

The day after this, I returned for my Neulasta shot. That takes about a minute to inject in your arm. It stings, but not bad. It made me dizzy, too. More Ativan and some time in bed helped.

"What's the right thing?"

2008-01-27T08:54:00.000-08:00

My nine-year-old (almost ten) just asked me this question. We were talking about a retreat I may attend in April, at The Crossings. A "Crazy Sexy Cancer Boot Camp" retreat. I've usually adhered to a self-imposed policy of NEVER going to an event called boot camp anything, but I may change my mind.

Anyway, the child asked me if I was going to the retreat that has "cancer souvenirs" and the trapeze. Cancer souvenirs is a term coined by my pal/fellow parent Sue, who got the honors of running me over to Southwest Regional Cancer Center for my aforementioned Neulasta shot. In a corner of the waiting area is a basket of T-shirts for sale, put out by the Cancer Connection, a non-profit. On the back of the shirts is "10 Reasons Why" something something. I haven't paid very close attention to it. But Sue, marketing professor, was immediately hooked. "Cancer souvenirs!" she said. "I never thought of marketing cancer." Honestly, neither have I, but really, it's everywhere — once you're in Cancer Land. The term "cancer souvenir" has stuck, however.

I replied that I thought the lady leading the workshop has some great things to say, but that I am very skeptical of some of her advice. Like what? kid asks. (Wow, not expecting this.) Well, I said, (and now I'm paraphrasing) what she has to say about nutrition isn't backed up by scientific documentation. By comparison, the guy I went to for advice about what to eat and take not only has the opposite point of view, he has the education to make himself more credible.

"What's the right thing?" she asked me.

Wow, not expecting this, either.

I told her unless I was convinced otherwise I would follow what the man with the PhD in oncology and nutrition said. I will listen to the person who I feel has the most authority to give me advice.

This is just my way of doing things. I'm not very concerned with what other people do — even if I AM outright mystified why they are doing the things they do (junk food, all raw food, and God knows what else).

It is boring to be this person right now

2008-01-24T14:10:00.000-08:00

I've had so many sweet comments on my head shape, my hair, etc. But I am very bored with this already, the novelty is pretty much gone. And I've only just gotten started. Also, my head gets cold a lot. Who knew what kind of job hair really does?

Why do I have cancer?

2008-01-23T14:51:00.000-08:00

Is this an obvious question, or not?

I really could not decide, when Dr. __, the Chinese acupuncturist, asked me this question yesterday. My head was just swimming because I had had my first Neulasta shot the day after my chemotherapy. Neulasta, a powerful and expensive drug, ups your white count when you're on chemo. I got dizzy about 30 minutes afterwards. Then, I was trying to answer the question why I thought I had cancer. Diet? Hormones? or Genes?

I felt like saying, "DOOD! I'm a woman, first of all. Second, I live in an industrialized nation where factories have contaminated my water and food supply, and they don't have to even tell me what the hell they've done. A better question would be, Why doesn't everyone have cancer right now?!"

I ended up saying that my mother had breast cancer and maybe that's why I have it, too.

Then he gave me the rap about fats, meats, and dairy — all the things Asians can't process very well and which gross them out terribly. I wondered if I could mention all the MSG I have consumed with Chinese food. Maybe that gave me cancer.

I just got acupuncture instead of being cheeky. I was a newbie, but it was exactly like everyone has told me it is. Small needles in your body. Pretty nice. I dropped off to sleep and woke myself up snoring. When it was done, I felt like a million bucks, and very hungry.

Then they spooned some unidentified herbs into a plastic pot and told me to make a tea of them three times a day and drink it. Here's what it looks like:

Oh wait, it says, "Shi Chang Pu, acorus tatarinowi (rhizome)" on it. Sure, I'll get right on that. I'm sure the emergency room will know just what to do if I'm spewing and in convulsions. My oncologist will be beaming.

Words of Encouragement, and Other Words

2008-01-21T18:24:00.000-08:00

You expect when you tell people you have cancer, they will mainly be supportive and uplifting, but one or two people will probably tell you about how their sister's husband's aunt was sick for ages, and then, oh yeah, she died. Oh! But they know I'm not going to die, oh, whatever made them think of that story, they shouldn't have said that, oh dear! No, no, they know just lots of people who have made it, just like I'm going to. And I should call anytime I need something.

Okay, this hasn't happened to me yet. Most, if not all, my friends and acquaintances have been nothing but fabulous to me. Many, many messages of support, and "call me anytime, I mean it."

From a friend whose mother died recently: I am devastated by your news. Having recently been involved with my mother's cancer treatment, I understand that it must be overwhelming to you. Even with the best of doctors, it seems impossible to form an accurate understanding of the disease and its treatment, so every decision must be made with far from perfect information, which leaves the next best consolation to be prayers to whatever it is that we might believe in …

From a friend whom I don't know all that well, but she has cancer, too: For days, for months, after I was diagnosed my emotions were a swirling cocktail of free-floating anxiety; equal parts shock, grief, and disbelief shaken and stirred with a heaping helping of fear. … to keep from panicking at every turn, I ultimately decided to just take things as they came, one day at a time and stopped worrying about the long-term. It was easier to wake up and concentrate on what I had to or wanted to do that single day, then to let my mind wander to what tomorrow would be like. But that's me. What worked for me my not be what works for you.

From the one of the two oldest friends I have whose mother and brother each died of prolonged illnesses: Another thing to consider (if not already in place): personal therapy for you during this whole process (chemo, etc). You cannot and should not go through any of this alone. Your family and friends who love you no doubt comprise the fabric of your support group, but having a professional therapist to vent with/to can be invaluable.

From the other oldest friend: his mother's phone numbers (she went through chemo this year herself) and a phone call, which he ended with "I love you." "Sure, you'll see a thousand statistics, etc., but the truth is that most folks survive this, and I know that you will, too." he wrote me.

From a sewing pal: I have not experienced what you are going through, but I understand about needing time to cry and scream at the heavens. If you need to talk, or cry, or just scream, you can always call or write.

From a SXSW friend (hell, no "SXSW" modifier needed): I care about you. I feel shitty that you're sick and you have to look out for everyone else's feelings.

From Spike (no real reason to keep her identity secret!): All I can think to say for now is HOLY FUCK. And WOW that REALLY SUCKS.

Later, she suggested "divorcing" my cancer, as she had done with a toxic relationship with a person, as part of her suggestion to keep a journal: I used a real legal form. If you want, I'll see if I have my blank divorce papers and you can divorce your cancer.

That's why it's critical to remember the good things people say when someone sends you something like this:

Everyone deals with this crap in different ways; I don't talk to
very many people about this stuff b/c my approach is generally
considered harsh, even by people who haven't had cancer. Maybe not
harsh, but more realistic than most.

Wow, the real nitty gritty, eh? Cool. I hadn't talked to or emailed with anyone who'd had breast cancer at a young age, like me. Eagerly, I read on:

I guess I just think that the process, or project, of dealing with the medical
industry on a daily basis, combined with enduring all the of the
mumbo-jumbo survivor speak that has infiltrated our culture, I got a
little bit jaded, but also a little bit more alive, and more sure of
what kind of life I wanted to live. If I was going to be able to keep
on living, I would make some decisions about the things that improved
the quality of my life.

Okay, with you so far, for sure. Hardly anyone would get a cancer diagnosis, and then say, "Oh well, carry on." Specifics are hard to come by, though. What was at the top of this woman's list? I couldn't wait to know.

This did not include owning teddy bears wearing tiny t-shirts with pictures of tiny pink ribbons on them. It does include reminding people that these things are not important,
even if you were going to endure a potentially fatal disease, your dignity does not have to be compromised by clutching a teddy bear.

From my one of my best pals, and documentarian of the chemo haircut: Man, you'll have to let me know -- when you start chemo, do people start showing up at your house with big trucks of teddy bears or something?

Gentle reader, rest assured, I will totally tell those teddy bear delivery people to get fucked when they come to my door.