This is the last photo I took before I found out I have metastatic breast cancer.
This photo was taken in the final days of September when I went to visit my surgical oncologist for my annual checkup.
I’m wearing a hospital gown with those boots. The contrast of the gown and boots made me laugh.
I snapped the photo.
The actual diagnosis came one year ago today.
It came on the first day of Breast Cancer Awareness Month (a month which has always driven me batty).
It came more than five years after I finished treatment for stage II breast cancer (no, five years without a recurrence does not mean you’re cured, let’s just bust that myth right now. Hormone receptor positive breast cancer in particular can return after 5, 10, 15 years or more).
……
I went to my surgical oncologist annually so she could check on how I was doing after she surgically removed both breasts in January of 2007. After the active post-surgery period, the visits consisted mainly of a physical exam and a talk about how I was doing and what post-chemo treatments I was on.
At this particular visit I complained of some rib pain in a place where I’d broken two ribs in a fall a few years prior. Nothing else was bothering me that day. While I was changing into my street clothes she phoned downstairs to my medical oncologist who said he would put orders in to repeat my bloodwork a month early. It was a test he did every six months at that point.
None of us were worried.
Flash forward a few days to Monday, October 1, 2012.
One of my medical oncologists (I have two, one is a general hematologist/oncologist and one is a breast oncologist) walks into the room with a concerned look on his face and says hello and goes straight to the computer. He starts punching things in to log into the system.
I ask him, “How are you?” “Not so good,” he says. I am sure he’s talking about himself, his family, his favorite sports team perhaps.
“Your markers are elevated,” he says. And only then does he turn to make eye contact with me. I know now, looking back on it, it was too hard from him to tell me. He really didn’t want to deliver that news that day.
When he tells me, he knows I know what that means. We’ve been a team for more than five years by then. He knows I know. It doesn’t need to be explained.
He looks at me while I crumble. And swear. A lot. He comes over to comfort me. I am alone in that room with him. No one expected this to be anything but routine. I didn’t bring anyone with me for the appointment, I almost never had company with me at any of my appointments over the years. That’s how I liked it most of the time. I still do, actually.
But today’s visit rapidly becomes the farthest thing from routine.
……
I wasn’t expecting it. I confess that. The pain I’d complained about a few times during those five years? That pain had never turned out to be anything.
And oh… by the way, that rib pain that I complained about? It actually was nothing. It was just sore ribs from the old fractures.
I was sent across the street to the hospital immediately for a chest x-ray. This looked clear. My PET scan the next day showed no cancer where I’d complained of soreness. But there was cancer elsewhere: in multiple bones and lymph nodes. It really was what we feared. We were lost, falling, reeling, grieving.
Within three days I was having a surgical biopsy through my neck to gather malignant tissue and lymph nodes. Within two weeks of the news I had the true sign that would have taken me to a doctor anyway: bone pain in my collarbone area from a fractured first rib caused by cancer breaking through the marrow into the bone.
I’d have found out within a few weeks that I had metastatic cancer anyway when the pain in my shoulder got severe… which is why some doctors don’t even use tumor marker tests. The marker tests don’t reflect cancer activity for everyone. Physical symptoms are usually quite reliable. And let me also point out that a lot of muscular pain can be hard to distinguish from bone pain depending on location. I’ve had both. And it’s not easy to tell them apart in my opinion.
I went and met with my other oncologist a few days after that.
I started chemo within ten days of hearing my diagnosis.
Things moved fast.
Life changed forever.
……
The weather is changing now. It’s warm this week so I don’t think I’ll be reaching for those boots.
But when the cool air comes again in a week or two or more I am not sure how I will feel when I reach for them.
Right now they just make me feel sick.
Today marks the six year anniversary of the day I was first told I had breast cancer. When the radiologist told me the news, she also said she didn’t know exactly what it was or how bad it was.
This is why you do not schedule mammograms or biopsies right before a holiday. Especially Christmas. You’ll be going on vacation… and if you aren’t going on vacation, the doctors, nurses, and pathologists will.
I was told on December 20, 2006 that I almost certainly had cancer based on the mammogram and ultrasound images. I’d need a biopsy to confirm it. But they couldn’t do the biopsy until after the new year. It’s hard to hear, “We think you have cancer. Now go on your vacation and when you come back we’ll figure it all out.” Weeks later I was told I had extensive DCIS and would need to have my left breast removed. I opted to have a double mastectomy. A few weeks later a second look at the slides revealed I had some breast cancer in one of the lymph nodes that had been removed (I am now a big advocate for a second opinion on pathology). I was reclassified as having stage II breast cancer. I had chemotherapy; later, a salpingo-oophorectomy.
Almost six years later, I have now found out that I have stage IV (metastatic) breast cancer (details here).
Yesterday I went to an appointment with my local oncologist. I go to see him every two weeks right now to review bloodwork and to discuss dosing for the next round of chemotherapy which starts tonight.
The concept of “good news” has been completely redefined since my new diagnosis. There is no cure, so I can’t hope for that. There is never going to be a day I am not aware of running out of time. Now “good news” gets defined as stable disease. If you’re lucky, and the chemo is working, good news can even mean reduced disease. Now I hope for that.
I look at my oncologist’s face when he walks in the room. I scan it for signs of what kind of news day this will be. The day he told me about my metastasis I read his face. When he walked in that day I asked him how he was and he said, “Not good.” I assumed it was something about him, his family. I immediately starting worrying about the bad news he was going to tell me about someone else. But it was my bad news. It was my nightmare.
I never used the word cured. I never said it. And I don’t like when others do with my kind of cancer. I always prefer the technical terms NED (no evidence of disease) which means it may be there, but we can’t detect it with the tests we have done. I don’t even like the term “cancer-free” for my particular cancer… again, there might be cancer there, but just not enough to be detected or can’t be with the tools used.
Five years had come and came and gone. Even nurses in other specialties would say at my checkups, “Oh! Five years! That means you’re cured!” and when I’d explain to them that it actually didn’t mean that at all with my kind of breast cancer they would look at me quizzically.
“SEE?! I told you!” I want to go back to say to all of them. I was vigilant for a reason. It “shouldn’t” have happened based on the statistics, the predictions. But it did. And now the only life I’ve got is spent dealing with it.
……………..
I watched my oncologist’s face yesterday. We’ve had some bloodwork results in the last two months that have been a good first step but he hasn’t been willing to budge much on declaring that this chemo is working. One or two data points are not enough for either of us to feel confident, actually. But yesterday we got our fifth data point.
I still have metastatic cancer. That isn’t going to change.
But I have some news I can finally share: my bloodwork is showing “indisputably” (in the words of my doctor) that my cancer is shrinking. The chemo is working. The pills I’ve been swallowing, seven or eight a day for seven straight days at a time, in alternate weeks, are doing what we’d hoped. The cancer is still there. But it’s smaller. But it’s responding. It’s been consistently trending down since I started on Xeloda. Now, with more than a few data points, we can finally characterize the effect and I can share it publicly.
……………………….
So what does that mean? I know that’s the question most will ask. It simply means this is the chemo I stay on for now. It means that I just keep doing what I am doing. I’m not “cured” or “feeling better” or “cancer-free.”
It means that modern science and pharmaceuticals are giving me some time. For today, the cancer is responding, shrinking. And in the land of stage IV cancer, that’s unmitigated good news. Make no mistake, it’s no Christmas miracle. It’s not happening for any other reason than the fact that I am aggressively taking as strong a dose of this drug as I can tolerate, and it’s doing its thing.
Six years ago I went on Christmas vacation and feared for my life. I was scared and confused and miserable. Now, six years later I’m in a much worse place vis-a-vis cancer but my mindset is different.
I’m coming to terms with accepting the life I have — the one I thought I’d have is gone. I have created a new one. The best one I can.
For today, I celebrate the good news. I will go to my children’s school holiday parties. I will smile. I will make memories. I will not focus on side effects. I will find beauty in something small.
I will savor the things I can do today.
This is the last photo I took before I found out I have metastatic breast cancer.
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