Next Steps

At this point, we have received two opinions on appropriate next treatment steps. The oncologist at Rush suggested we investigate a clinical trial happening at University of Indiana at Bloomington. The trial tests whether additional chemo helps patients in my situation. At this point, we are disinclined to participate in the trial (mostly because I find myself hoping to be in the placebo group, and it doesn't really work that way).

The second oncologist - from Northwestern - absolutely felt more chemo wouldn't be appropriate. However, Dr. C had a few surprises. Her opening remark was 'we need to discuss having your ovaries removed as soon as possible'. This came out of left field for us - all previous discussions had supported the idea that I could have them removed at age 40.

Dr. C's logic was this:

- I have an estrogen-receptor positive cancer, which means estrogen will encourage any remaining cancer cells in my system to grow, divide, and become new cancers.

- Because I had cancer in 10 lymph nodes (a lot, according to Dr. C), and estrogen-receptor positive cancer resists chemotherapy, I absolutely positively have lots of circulating cancer left.

- Therefore, I need to do everything possible to discourage those cells, which means cutting out as much estrogen as possible.

- Women produce estrogen in two ways. First, through the ovaries. Second, through a compound released by the adrenal gland which the enzyme aromatase transforms into estrogen.

- There are two types of hormonal therapy drugs designed to interrupt the body's estrogen pathways: tamoxifen and aromatase inhibitors (such as letrozole). Pre-menopausal women can only take tamoxifen (which carries a risk of endometrial cancer and heart problems). Post-menopausal women can take letrozole (which doesn't carry additional cancer risk, but does increase bone loss). In head-to-head trials with tamoxifen, letrozole delayed additional cancers longer than tamoxifen.

- So, if I need to cut out as much estrogen as possible from my body in order to keep the cancer from growing, and letrozole is a better drug, then the best thing to do is to remove the ovaries in order to 1) remove the first source of estrogen and 2) make me post-menopausal so I can take an aromatase inhibitor to block the secondary pathway.

Dr C talked a lot about my being extremely high risk. She said that at this point, I am extremely high risk, but(blah blah blah) taking tamoxifen would cut that risk in half. However,(blah blah blah) at that point I would still be at extremely high risk. Doing the surgery, and taking the letrozole would cut my risk further, but (blah blah blah) I would still be considered extremely high risk. At this point I got a little frustrated (how does extremely high divided by two minus some more equal extremely high?). So, I asked if she could give me some concrete idea of what that risk might be. Unfortunately, according to Dr. C, because I did the chemotherapy before the surgery, all the methods of calculating risk don't apply. So I said, "look, I am going to fight hard no matter what, but I just want to know how hard a fight I am facing." Dr. C paused, looked me right in the eyes, and said, "you're going to have to fight really hard". We realized in that moment that Dr. C wasn't really talking about cancer risk. She was talking about death.

Zack and I have discovered our conversation with Dr. C reoriented our thinking about the immediate future in several ways. Not having children is no longer about my (in)ability to have them, but rather that carrying a child (with the hormones that would involve) could kill me. Hormonal therapy will reduce my risk of more cancer, but that is in many ways a proxy measure for mortality - the next cancer, wherever it strikes, will probably be much more dangerous than this one. At various times over the last six months, we have had to grapple with the huge changes to our future that this cancer has brought: memory problems that could inhibit my ability to finish my dissertation, numbness in my hands that make day-to-day activities more difficult, ovary difficulties that make having a child unlikely, the screening and monitoring that I will need that make living in areas with good oncology centers important, the absolute dire necessity of health insurance.

What we haven't really dealt with are the possible changes to the horizon of our time together. I used to joke with Zack that he had to lose weight so that he didn't have a heart attack at 55 and leave me alone to be the crazy old cat lady down the street. We celebrate the seventh anniversary of our first date this weekend - another twenty years together is beginning to sound miraculous. Not that I don't fully intend to make it that long - I haven't given up, nor will I spend the rest of my life declaring that I could die any minute. But it will take beating some pretty steep odds to get there, and sometimes, despite our best, most superhuman efforts, we lose.

We are starting to find our way toward laughing about it. Or at least toward gallows humor. It started with a question: "What changes do you make if you only have a short time together?" Answer: "Never fly coach". We started throwing things back and forth: "Buy the good stuff". "Find something to enjoy every day". "Go to Australia". "Make sure there is something to look forward to every tomorrow". "Celebrate everything".

So please join us in celebrating 2008. Go top shelf.