Thumbs Down for the Oncology Visit

I've been kind of a slacker about updating everyone, here. I just don't feel very motivated. I'm not having much fun, even though I know that I should be. I mean, I'm using my vacation days to sit here and watch the fluid accumulate in my back. I could have gone to Barbados, but this is way better.

Yeah.

But, it was kind of a big week. We finally met the Oncologist ... and the verdict is that the visit stunk.

I'll start from the beginning, shall I? Before we even made it into the building, I looked at my mom and proclaimed that "I don't want to go in there." Everyone was looking at us, presumably trying to figure out which one of us was the cancer patient. But, then I stood back from the door to let my mom open it. (Most doors are still too heavy for me. Lame.) And then, everyone knew. And they watched me. And I could hear their brains trying to figure out why the young person is visiting the cancer building. And they were all wearing scarves on their heads and they all knew each other and they were talking about their latest radiation treatment or their vomiting from chemo and I wanted to run.

But, I didn't. Instead, I sat with Scott and my mom in the stupid waiting room for an hour. An hour! And I don't do very well in chairs, yet. My back is still learning how to cope with the missing muscles, so I get knots pretty quickly. Also, there was nothing good to read. The newspaper that Scott found was three weeks old. My mom went on a hunt for a good reading material and found a copy of Oprah's magazine ... from Spring of 2008. Did you know that big purses are soon going to become popular? Well they are. Prepare yourself.

The wait wasn't without entertainment, of course. Besides the constant prattle of people comparing their treatment side effects, my name was called twice. Each time, I figured that I was going to be shuttled to an exam room. Wrong. The first time, someone from the billing office wanted to talk to us about insurance and how we're currently 571 dollars away from reaching our deductible. Humorous. That shouldn't be a problem since we recently saw the bills from the plastic surgeon and the hospital. They were $12,000 and $55,000, respectively. And that doesn't even include the surgeon's fees, the anesthesiologist's fees or the entire second surgery. I'm a very high maintenance girl.

The second time they called my name, I got up to go and the woman at the desk said: "Oh, they're not ready for you, yet. Dr. Petryk just wanted me to tell you that he's sorry that he's running late. It will be another 15 minutes." So, we continued to stare at each other.

When we finally got to see the doctor, things didn't really improve. The one highlight was that he said that he is hoping we can avoid chemotherapy. We won't know for sure until the oncotyping comes back. (That report will have, among other things, scores listing my prognosis for the next ten years if I do nothing else and my prognosis if we add chemo.) Dr. Petryk told us that there is a greater risk of getting other cancers, specifically leukemia, once you have gone through chemo. It's not a huge number, only 2%. But 2% looks very different for someone who is only 33 with a low expected benefit versus someone who is 70 with a higher number.

So, he would like to put me on Tamoxifen, the drug that I will take for five years and will put me into fake menopause by blocking estrogen from binding to the receptors, or something like that. (It's very hard to keep all of this straight.) I will have hot flashes and whatever else goes along with that process. At my age, I haven't really done much research on menopause, naturally. Also, we have a big choice to make.

Because my tumors were so highly positive for estrogen receptors, we know that it is estrogen that feeds them. While Tamoxifen will help, he wants to do more. And the options are Lupron, which helps to shut down estrogen production, or taking out my ovaries ... and he recommends the latter. Besides the fact that the oophorectomy (which is a ridiculous word) is the best course of action for my current tumors, even considering that early menopause carries increased risk of ostereoporisis, high cholesterol, dementia and heart disease. There is also the genetics part. Right now, I am at a 10% greater risk than the average woman for developing ovarian cancer. If the genetic tests come back as positive, then that number jumps to 40%. Removing the ovaries drastically lowers this number, but doesn't completely eliminate it. There is tissue in the abdomen very similar to the ovaries, and it is possible, then, to develop peritoneal cancer. But, this is a very low risk. So, it probably makes the best sense to get rid of them.

We were prepared for this. From the very first doctor's visit, back on February 4, we knew that my ovaries might need to come out. We knew about the Tamoxifen. We, likewise, knew that children were out of the question for at least five years. But we thought that, should we choose to expand our family, we would be able to do that once I was done with this course of drugs. Wrong.

Scott asked about my uterus, seeing the panic in my eyes and knowing very well where my brain was going with all this. (Theoretically, since they are taking my ovaries, but not the uterus, I should be able to carry a child, if we froze my eggs, right?) Wrong.

Even if we go the Lupron route, thus preserving my ovaries, I should never again get pregnant. Carrying a child would increase my estrogen to dangerous levels, thus making it very likely that I would have a recurrence of cancer. I suppose that if I was 25 and had no children, this might be a different decision. But, I have two lovely babies and I want to be around to watch them grow up. I want to help them fumble through their teenage years. I want to watch them plan their weddings. I want to be a sounding board for them as they weigh out the options of different job offers. I can't do all of that if I lose my fight with cancer ... and that means no more kids. The doctor held my hand and offered me Kleenex. I cried. My mom cried. Scott helplessly watched us crumble.

So, that sucked.

Thumbs down for the cancer building.

Thumbs down for the stupid outdated magazines.

Thumbs down for telling me I have low iron and hemoglobin levels and then taking six vials of blood. Isn't that counterproductive?

Thumbs down for the ovary removal.

And a big thumbs down for no more children.

But let's not dwell on the negative, hmm? I would like to offer an enormous thumbs up for all of your support. Thank you for all of the flowers. Thank you for all of the meals. Thank you for the books and movies and cards and phone calls and comments on the blog.

But most especially, thank you for the sweets. Last night, Scott asked me if I'd like a second helping of dinner. I said that I would, but that I'd refrain in favor of saving room for extra dessert. Then, I asked him if he thought that it might expedite my healing to alter my diet to a strict combination of bars, cookies, cupcakes and brownies. He didn't.

Killjoy.