Most Awesome Breast Cancer Swag

What is the cardinal social rule of breast cancer?

If you have it, people give you oodles of free stuff.

I began noticing this right after my diagnosis. In my surgical packet was a coupon for a free wig, from the American Cancer Society. (I know it's meant to be kind and helpful but I just kept picturing the evil synthetic wigs that are advertised in the back of ladies' magazines. "Yes! You too can look like Eva Gabor!")

Two days after the masectomy, I was carted upstairs from the ICU to where the regular sick people are kept. In my room was a huge pink-tulle wrapped basket, full of pink goodies from a local breast cancer group. (Most of the stuff I used-with the exception of Chicken Soup for the Breast Cancer Survivor's Soul. Those books just aren't my thing. I get easily creeped out by overly-emotional/sweet stuff.)
That basket did get me thinking about how well breast cancer research/groups are funded.

What do people get delivered to their room who have colon cancer? And is it brown? (Which I found out, yes, the colon cancer color fundraising color is brown. I'm disappointed at the lack of creativity. At the very least, I was expecting something with Katie Couric's face/bottom on it.)

Moving right along to my latest treasure trove of swag. I registered and attended the American Cancer Society's "Look Good, Feel Better," class on learning make-up and wig tips for lwomen undergoing chemotherapy.

It was an interesting class. I didn't learn much on the make-up front-but since I know how to apply stage make-up, I think I'll be OK. Learning about wigs was why I went. Since I'm about to have chemo and lose my hair, I want to be prepared. I've never looked like shit in my life and I'm not about to start-at least not if I can help it.

I walked out with over $200 in free make-up!!!!! And really nice stuff, too, like MAC, Estee Lauder, and Bobbi Brown. I knew we were going to get make-up kits to for ourselves, since the woman who registered me asked me what skin color I had. But I didn't know what awesome swag they would give out!!!

"The Plan"

Sorry I haven't updated the blog on what CJ and I have decided to choose as our plan for cancer treatment.

We've decided on Plan C. Which wasn't on the original list. (I tend to make stuff up as a go along) None of the options sounded good, so this is our compromise.

Plan C

I'm going to see my third oncologist doctor, Neelima Dendalouri, on December 16th. She is recommended by both my plastic surgeon, Dr. Venturi, and the Johns Hopkins oncologist, Dr. Prowell. According to Dr. Prowell, Dr. Dendalouri will probably recommend the same chemo regimen that Dr. Prowell suggested.

This would mean:

Six cycles of TC. Taxotere and Carboplatin are the drug names. The six cycles take place over 18 weeks. During this time, I will be taking Herceptin along with chemo. I will continue taking Herceptin for the rest of the year, after I have finished chemo.

After this delightful process finishes, I will take a medically recommended break. The doctors want to see any side effects of chemo and Herceptin wear off. This way, any side effects of other drugs that are prescribed afterwords will not be mistaken for the chemo/Herceptin side effects.

And this is where I deviate from Dr. Prowell's suggestions. I am going to use this medical downtime to see how my menstrual cycle is doing after chemo. I will track it with my trusty basal body temp thermometer and my Ovusoft computer program.

I want to see if:

a. I get my period back
b. If I'm actually ovulating
c. How many days I'm fertile and see if that time period has decreased since chemo

Of course, I will also have my first mammogram since treatment and blood work to make sure the cancer hasn't come back.

Then CJ, my oncologist, and I will have a tense sit-down to discuss how many months/years of Tamoxifen I'm willing to do. The longer I'm on Tamoxifen, the higher my chances are of going into full-blown menopause. Not good since I want to have another child. Of my own. Produced and manufactured by me.

We will proceed from there. It's a "wait and see" plan. I can't make a permanent decision about my future until after I've done all the above.

I'm sure this will make my doctor slightly crazy. Too bad. I'm the one who has to live with the long-term consequences.

"Mommie's Fake Boobie IS NOT A YARMULKA!!!"

Elizabeth has some very fancy and expensive new headware. It's my fake boob insert that I use to " balance" me out. Right side is a DDD; left is now a pert C. Can we say "asymmetrical?"

Anyhoo, I left it out and she decided it made a great hat.

Dear Goddess-Please, Please Never Let Me Go "Brain-Dead" in a Catholic Hospital

Really, this new directive from Roman Catholic Bishops crosses the line. I hope I never end up, either due to dying from breast cancer or simply an auto accident, at a Roman Catholic hospital, in a "persistative vegatative state."

"This story won’t get as much publicity as the Catholic Church’s efforts to insinuate its doctrines on abortion into the health care bill, but the bishops also declared this week that Catholic hospitals must provide the equivalents of food and water even to patients in a persistent vegetative state.



The new directive extends to patients “in chronic conditions (eg., the `persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care.” In English, what this means is that if you are unlucky enough to be taken to a Catholic hospital, and you have experienced a seizure or traumatic accident that puts you in a vegetative stage from which there is no hope of recovery, the hospital will force-feed you through intravenous tubes—even if you have a living will that specifically rejects nutrition and hydration in such circumstances.


Why, you may ask, does this matter? After all, no one is forced to use a Catholic hospital. Except people are forced to do just that, in the many areas of the country where Catholic hospitals have merged with secular hospitals and have successfully demanded, as part of the price of the merger, that health care rules approved by the church be followed in the merged hospital. For more information, visit www.mergerwatch.org. MergerWatch is a nonprofit organization that has been tracking the effects of these unions between secular and religious hospitals for more than a decade. "

This ran on The Washington Post's website today. Here's the link: On Faith.

Good to know. CJ and I have Living Wills dictating that if either of us ever end up in a "persistative vegatative state," to unplug us. If we end up in a Catholic hospital, our families or Elizabeth will have to shell out extra money to have us transferred to a non-Catholic hospital in order to be allowed to die? (And now I worry that the Church would pull some stupid crap like fighting the family in court, refusing to release/transfer the patient to another hospital because it would be "assisting murder?")

Why should my religious beliefs on being allowed to die be negated by theirs? The principle (stemming from the First Amendment) that all religions must receive equal treatment in the law is one of the US's legal achievements. One faith cannot be legally preeminent over another. Good; let's keep it that way.

"So....What Kind of Cancer Are You in Here For?"

CJ, my mom, and I made our second opinion pilgrimage up to Johns Hopkins today. We went to the "Incredibly Long-Named Building for a Rich Guy Who Must Have Died from Cancer and Gave Hopkins the Money for the Building," building, aka The Sidney Kimmel Comprehensive Cancer Care Center. No, really. That's the name. I hope Sidney Kimmel, whoever he was/wherever he is now, had a very good laugh making the name so incredibly long.

Once inside, sitting at Admitting, I had a good look around at the other patients there. I had the strongest impulse to poke the guy in his 20s next to me and ask in a jail cellmate-like way, "Pssst...what kind of cancer are you in here for?" Don't worry. I didn't. He was too busy talking to a patient's advocate about his upcoming surgery. And I really had to use the bathroom.

My second-opinion doctor (that is all she does-second opinions. And also works for the FDA.), Dr. Tanya Prowell  (doesn't that name just sound like it was taken from a James Bond novel?) is around my age and great. And just an FYI-her specialty is younger women with breast cancer. Oh-when you click on her bio, don't be lazy. Scroll down.

Yes, she is recommending chemo. However, she is not recommending the drug regimen that Dr. Wilkinson had recommended. (Older, harsher, more cardiotoxic drugs.)

Here are my options:

1. No chemo BUT five years of hormone therapy, i.e. Tamoxifen for the .4cm of invasive cancer that is estrogen receptor positive/ER+ and Herceptin because the cancer is also HER2 +3, which means it is way overexpressed. I cannot try to get pregnant until after that, if I go with this option.

2. This is the doctor's favorite option. Six cycles (18 weeks) of chemotherapy, using the drugs Taxotere and Carboplatin, while taking Herceptin. I would continue taking Herceptin after the chemo ended, for the rest of the year. (The 52 week year that the chemo takes place in.)

Then, after a short medically needed break (not just for me-but to be able to let the drugs leave my system before starting Tamoxifen. Otherwise, it would be hard for the doctors to differentiate any side effects/problems that are caused by the new drug.) I would take Tamoxifen for 5 years and try to get pregnant.

She is recommened CJ and I see a fertility specialist to bank some embryos before chemo, as an "insurance policy."

3. The comprimise. I do the 6 cycle chemo regimen that she suggested with the herceptin, and then take the herceptin for the rest of the year. I then do two years of Tamoxifen and then try to get pregnant.

I'm only looking at option #3 right now. Option #1, aka Dying Young and Stupid, doesn't appeal to me. Neither does Option #2's heavy fertility regimen on my badly-reacting-to-any-hormones PCOS body and the possibility of chemically frying my ovaries. Plus, the outrageous cost of fertility treatments (although CJ's current medical plan does pay for it) but also finding a specialist that can/wants to deal with my older mom age, PCOS, and the cancer cherry on top.

The PCOS problem is rearing it's ugly, acne-riddne head in all of this; my fertile time during my cycle is getting shorter. Just in the past two years. How do I know? I track it by the Fertility Awareness Method, aka FAM. I have a computer program Ovusoft that does it for me. That is how Elizabeth is here. And how I got pregnant last year. So, putting off childbearing is not OK.

Speaking of Elizabeth, I have to put her to bed. I'll write more tomorrow.

I Hate Being Graded Without Knowing the Criterea

So, I did some research. I'm that kind of gal.

I want to know EXACTLY why I was told by the first oncologist I saw that I need chemotherapy. I didn't grow up to mearly nod my head at everything the nice doctor told me. (If I had, then I would probably be at least 300lbs., not ovulating, really bad acne, and probably a type II diabetic by now. I had to see 5 different doctors, have 3 MRIs, 1 CAT scan, and 1 really gross 24-hour urine collection to determine that I have PCOS. But I'm damn glad I did. My reason for this gladness is now "helping" brush our very disguntled cat with syrup-sticky hands.)

No, I grew up in a house where you questioned authority. (As long as it was some non-parental authority. Questioning that got you grounded/sentanced to rake leaves or steam carpets.)

Here is rubric I've been able to garner on why chemotherapy might be or might not be appropriate for me:

1. I have Stage I breast cancer, mostly DCIS, with a small invasive component. Small enough that the preliminary pathology report from my mastectomy surgery could not see it with the naked eye or under the first microscope. I'm still waiting for the final pathology results from surgery. This will include my Bloom or Nottingham score.

2. Here is what the American Cancer Society says about how oncologists evaluate your need for chemo.

Adjuvant systemic therapy: Most doctors will discuss the pros and cons of adjuvant hormone therapy (either tamoxifen or an aromatase inhibitor) with all women who have a hormone receptor–positive (estrogen or progesterone) breast cancer, no matter how small the tumor. Women with tumors larger than 0.5 cm (about 1/4 inch) across may be more likely to benefit from it.


If the tumor is smaller than 1 cm (about 1/2 inch) across, adjuvant chemotherapy is not usually offered. Some doctors may suggest it if a cancer smaller than 1 cm has any unfavorable features (such as being high-grade, estrogen receptor–negative, HER2-positive, or having a high score on one of the gene panels). Adjuvant chemotherapy is usually recommended for larger tumors.


For HER2-positive cancers larger than 1 cm across, adjuvant trastuzumab (Herceptin) is usually recommended as well.

I didn't have an invasive tumor larger than 1cm. If they can't find it yet, I'm wondering if that means it's smaller than .5 cm, too. (That's good!)

My cancer is estrogen receptor positive.(That's good!)

My cancer is also HER2-positive +3. Which means it was way overexpressed. (That's bad.)

My cancer was originally diagnosed as low to intermediate grade but the oncologist seems to think that the biospy report (which was all she had to make a diagnosis from since I saw her before I had the masectomy.) was incorrect due to some cells appearing to be more organized and thus able to replicate themselves in a more perfect fashion and quickly. (Remember high school biology? OK, now-remember mitosis? Like that. Only on speed.) This would make the invasive component high grade rather than low grade. (And, needless to say, that's bad. But we area still waiting for the final pathology results which should be in later this week.)

My cancer is not inherited. (I took the BRCA 1 and BRCA 2 genetic tests already.) Of the many things lurking in my gene pool, breast cancer isn't one of them.(That's good.)

Since I've been looking stuff up, I feel better. I hate walking into any situation blind, especially ones in which I'm supposed to have a coherent conversation about toxic chemicals that might be injected into my body...but maybe I'm just too picky.

My Top-Five List of Who I Don't Plan on Flashing

I'm certainly not shy about showing what the new boobie looks like to anyone who asks. Except for those listed below. Not that I think, for one instant, that they want to behold it in all it's glory, but rather because it would be extremely embarassing to us both.

1. My dad. Really, when was the last time you flashed your father. I managed to make it through puberty without acknowledging any change and faked my way through pregnancy, too. Honest, Dad, Elizabeth was a "virgin birth."

2. My brother, Andy. Ick. I can't remember that last time visual nakeness occured between the two of us (I have mercifully blocked it out) but I'm sure it happened sometime between the years that I was forced to change his diapers and him peeing on me, (there's an almost 6 year age difference between us) and when my mother decided to stop being cheap and forcing us to share the same hotel room bed on our yearly Easter trips to Florida. (When I got fed up with Andy's Darth Vader-like breathing and pinched his nose shut and covered his mouth in the middle of night. He though I was trying to kill him! Ah...that crazy kid.)

3. My father-in-law. Enough said. I was embarrassed enough when I when we had to share a bathroom in their old house. I turned on the faucet every time I used the toliet. Because I'm paranoid and private like that.

4. My brother-in-law, Mike. Really, as much fun as it is to torment him with the threat of that, I think leaving his niece, alone and outside of his front door with a note pinned to her shirt saying, "Uncle Mike and Aunt Lisa, Mom and Dad said they need the weekend off. My clothes and the cat are in the bag. They said they will see you Tuesday," is a much funnier practical joke. Yes, we will be filming this for YouTube and no, we wouln't actually leave her.

5 My friend Sabina's husband, Joe. He's new to the family and we don't want to scare him too much...yet.

A word to my male friends, Bill and Dave. You've already seen the "full show" when I was nursing. Yawn. Moving on now.