A new diagnosis

In light of my preliminary metastasized cancer diagnosis, I went up to Seattle to see my boyfriend who had arranged a semi-awkward photo shoot for us with his friend Riain. The whole thing can only be described as "an engagement shoot for a couple who are not engaged." People would smile as we posed near the docks in Fremont, and I wanted to explain, "We're not engaged, I just have incurable cancer so he wants pictures to remember me by." Later that night I went out to dinner with my closest friends in Seattle, and my usually lively friends were somber and looked like they were about to cry. I even called an ex-boyfriend whose parents are very involved in Seattle hospitals to see if he could give me the name of a good oncologist who could get me into the latest trials.

No one had anything nice to say about cancer at dinner:

On Tuesday I was leaving the grocery store after picking up some items for dinner with my friend Liv when my pulmonologist called. "Well Karen," he said, "I think you've hit a grand slam." I don't watch sports, I don't even know which sport a grand slam takes place in, so I had no idea whether he was going to tell  me good or bad news. "I can't believe I'm saying this," he said, "but the pathology reports are telling up this isn't breast cancer. It looks like you have a carcinoid in your lung." At that moment I started getting annoyed that he was using sports metaphors to deliver shitty news. "Wait," I said, "I have lung cancer too?" And then he explained that I have a 3 cm neuroendocrine carcinoid, which is a slow growing tumor that is usually found in the gastrointestinal system of 70 year-old men at VA hospitals. "Instead of one incurable cancer, you have two curable cancers, this is great news."

According to my oncologist carcinoids are "incredibly rare," more rare with another cancer, and ever more rare in young women. My pulmonologist is confused, my surgeon is confused, my oncologist is confused. Since I have two kinds of curable cancer, we now have to refer to my diagnosis as "Karen's cancerS."

Right now we have no idea how we are going to treat my cancerS. We decided to consult with doctors at St. Vincents and OHSU, so there are a lot of ideas out there. One doctor said we should do surgery to remove the lung tumor (it's intense, "think open heart surgery" and I lose my right lung), another said I should try radiation to shrink it. One doctor wants me to have a mastectomy followed by chemo, another wants me to have chemo first, and then have breast surgery.

So now the Achesons are back to their optimistic selves, "Great news!" read the texts, emails, and Facebook posts, "Karen has lung cancer!" My brother leaned back on the couch last night and smiled, "Just think about it, in a year you'll be cancer free. Everything is going to be fine."

Tests Tests Tests

I come from a family of ridiculously optimistic people. "Everything will be fine" or "just relax, it'll work out" are the two phrases I heard most often growing up. We bought plane tickets at the last minute, turned in forms late, and showed up to things on our own time schedule. My brother is especially good at going through life with the belief that everything will be okay. While I spent my childhood FREAKING out about the disappearing rainforests and decline in accessible women's health resources, he would lean back and say, "Relax Karen, it's cool."

Cancer has thrown my tribe through a bit of a loop. First, there was the conviction that the lump in my breast couldn't possibly be cancer. After getting the diagnosis for malignant cells everyone was in shock, but they rallied, "They'll take it out, radiate the area, and you'll be on your way!"

Then the ultrasound had revealed that my lymph nodes were swollen, but my family remained optimistic, "Of course they're enlarged," they cried, "the doctor said your body is probably just trying to fight off the cancer. It doesn't mean anything."

Then the auxiliary lymph node biopsy came back positive for cancer. "Ok fine," they said, "so it's in a couple lymph nodes, this may mean some chemotherapy, but you're going to be fine."

The following week I had a CT scan and bone scan. My bones, liver and stomach were clear, but there was a 3 cm tumor growing on my right bronchial tube that shouldn't have been there. And the doctors couldn't think of anything benign that could be there (it's too big to be a lymph node). "There is a good chance the cancer in your breast has spread to your lungs," my oncologist told us, "this would mean you have stage IV cancer. It's considered incurable at that stage, but we will work to manage your cancer." She went on to talk about al the promising trials taking place, and scheduled me for a bronchoscopy (biopsy of the lung tumor) the next day. While I was recovering from my bronchoscopy (coughing up blood, shivering through opiate withdrawal), the pulmonologist spoke to my family and said he was 99% sure it was metastasized breast cancer and they needed to prepare themselves.

Right before my bronchoscopy:

So now they're trying to rally around this news. My mom and aunt have been googling examples of "exemplary women" who are living "happy productive lives"  with stage IV breast cancer, and my mom keeps repeating the story of "that one woman" who outlived the husband who left when she was given my same diagnosis. Everyone is "convinced" I will one of the 15% of women who are predicted to survive at this stage after 5 years.  My Aunt has been repeating over and over that 2% of stage IV cases go into remission, and that she has no doubt I will most certainly be in that 2%. But the cracks are beginning to show. I overheard my brother asking his best friend, "Is my sister going to die?" My usually amazingly-put-together mom is in shock and has started showing up for appointments in sweat pants with no underwear. My cousins are calling my Aunt Lisa crying on a daily basis. "I'm done with thinking things are going to be okay," my brother said, "all I get is really shitty news."

A normal bronchial tube:

MY bronchial tube:

Little reminder

I came home a few days ago to find my mother had left an album full of baby pictures on my bed. When I asked what they were for, she answered, "I just wanted to remind you how beautiful you are bald."

Find it.

One of my best friends sent this to me years ago, and then again when I called her with the news of my diagnosis. I've read it every day since. Some days I've read it twice.

Let it all begin.

In August I found a bump in my breast. I mentioned it while getting my annual check-up, and my doctor said it was probably nothing, but suggested for "peace of mind" I could get an ultrasound. "Don't bother with a mammogram," she said, "You're only 30." I went to the breast imaging center the following week, and the receptionist asked me to sign a form agreeing to pay for my mammogram in full (about $600, an entire month's rent) because most insurance companies won't cover them for women under 40. I opted out. During my ultrasound, the radiologist told me I had a "little bump" and said it might even be tissue irritated by my bra. I was told to check in 6 months later to confirm it hadn't grown.

I went back to my internship, continued writing papers like crazy, went through a god-awful break-up, and figured I was feeling exhausted because social working and breaking-up are hard to do. Fast forward to April and my brand new boyfriend pointed out the lump and told me I needed to get it checked out. At first I tried to get out of going, "The doctor said it was nothing," I whined, "My insurance doesn't cover this stuff!" But he's a better arguer (lawyer vs. social worker, I didn't stand a chance), so I ended up at the breast imaging center the next week. During the ultrasound they discovered the lump had tripled in size, it's borders were irregular, and my lymph nodes were swollen. The doctors were puzzled, "We're going to need to do a biopsy."

I still wasn't worried. I go to yoga every week with my friend Sarah. I eat a mainly vegetarian diet. I ran a 25k up a mountain at the end of January. Our family has no history of breast cancer, and someone is always getting a benign mass removed. My mother reiterated over and over, "We just come from a long line of lumpy breasted women."

On Monday I was packing up my suitcases and preparing for my last summer of grad school when the radiologist called to let me know my biopsy came back positive for malignant cells. I didn't respond at first, so he followed up with, "I realize I'm using a lot of medical terms, just to be clear, this means you have breast cancer." I can't remember the rest of the conversation very well. I think he told me the type and grade and made some suggestions about next steps and support groups for young women. As we were preparing to hang up, he expressed how shocking my diagnosis had been. "We were convinced it was a fibroadenoma or cyst," he said, "when we hear hoofbeats we think horses, not zebras."