Thursday, January 31, 2008

Cancer By the Hour

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.

Wednesday, January 30, 2008

Gene therapy

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.

Monday, January 28, 2008

Chemo Week One is done

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.

Sunday, January 27, 2008

"What's the right thing?"

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).

Thursday, January 24, 2008

It is boring to be this person right now

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?

Wednesday, January 23, 2008

Why do I have cancer?

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.

Monday, January 21, 2008

Words of Encouragement, and Other Words

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.