Scanxiety and Hope

I haven’t had bad scanxiety recently. Mainly because, I expected my scans to show the cancer is growing. When they did show it growing, I felt shitty–but not before the scan, just after, when I knew the results. 

This week is different. Because things have been going well so far on Xeloda. I never ask about my tumor markers, since I know they haven’t been an accurate reflection of what my cancer’s up to. But this weekend #bestdocever called to say that although he still doesn’t trust my tumor markers, they’re so far down now that he felt like he should tell me about it. This is good news, of course. Tumor markers down is better than tumor markers up, even if down may not mean anything, and way down is definitely a positive sign. We’ll know better when I have my brain MRI on Wednesday.

Problem is, I have a very complicated relationship with hope these days. I’m planning a big vacation for my family next summer–a visit to New York City, crossing on the Queen Mary 2, visiting London, taking the sleeper train to Inverness and exploring the highlands and Edinburgh before flying home–and thinking about it is both exciting and terrifying. I am so excited about the idea of this trip, and so terrified it won’t happen, because I’ll be too sick, or worse. I hope we’ll go. And hope is hard. Because hope acknowledges the possibility that what I hope for won’t happen.

I think that’s why, before most of my scans, I just expect the worst. Being let down by my body over and over again is hard. I don’t hope that the scan will show something good, because it’s just too hard to pick myself up when the scan shows more progression.

But this time is different. This time there’s a legitimate reason to hope: those plummeting tumor markers. I can’t help but hope in the face of hopeful data like that. And so I’m terrified of what those scans will show. I find myself distracted and weepy when I should be engaged with the kids. I start to worry, what if the scan shows something bad–instead of my usual acceptance that it WILL show something bad. What if there are too many brain metastases now for gamma knife to be an option? What if we run out of drugs that work on my brain?

I know this sounds completely fucked up, to be sad and anxious because of good news. But everything in the world of cancer is completely fucked up. Losing two friends and having two others enter hospice in the span of a month, when you’re not even 40, is completely fucked up. Having a 4 year old who knows what an oncologist is, is completely fucked up. So why wouldn’t my feelings about good news be completely fucked up? 

It would be nice if Wednesday could get here as quickly as possible.


I’ve lost my short term memory. Let me give an example of what this is like: the other day, I spent a half an hour looking for my warm coat, the one I get compliments on every time I wear it (thanks, ModCloth–secret of all my fashion success), and still couldn’t find it, so I gave up and went out with my raincoat instead and was cold all day. I’d hung my coat in the bathroom, not its usual place, and so I couldn’t find it. Could. Not. Find. It. The Boy spotted it that evening or I’d probably still be looking for it.

I now have to write everything down or I’ll forget about it. Thank goodness for technology–if I didn’t have a calendar I could check every morning to remember what my plans for the day are, I’d miss every doctor appointment, every phone call with a reporter, every lunch with a friend. If I don’t immediately respond to a text, I’ll forget I received it and never respond at all. I’ve had to warn everyone in my life that I’m not ignoring them on purpose, that it’s not a Seattle No, it’s just that I can’t remember anything.

I talked to #bestdocever about it, and he thinks it’s chemo brain from the carboplatin I was on this summer. I fucking hate carboplatin. It ate my whole summer. It’s left me still needing blood transfusions from time to time because it gutted out my bone marrow and I keep getting extreme fatigue from having low red blood counts. And then there’s the chemo brain. 

It’s scary not being able to remember anything that’s just happened. It’s not like going into a room and forgetting why you went in there–that happens to everyone as they age, and I can joke about it. No, this is something more insidious. It feels like it’s changing my personality. I used to be so on top of things, but now…in fact, I just told The Hubs something and he said, “Yeah, you told me that yesterday.” And I don’t remember telling him, at all. I’m probably that annoying person at parties who tells the same story over and over again, and I don’t even know it.

The good news is, #bestdocever thinks it’ll get better the further I get from the carboplatin. It takes 6-12 months for it to improve, if it’s going to improve. But that “if” is scary and I have plenty of friends for whom it never improved. The collateral damage of cancer treatment is lasting. It’s brutal and nasty and so incredibly unfair, especially for those of us who are going to die anyway, and the treatment is only buying us time, at a terrible cost.

Science: please help us. We’re suffering. Please find us better treatments, so we don’t have to live and die this way.

Komen and Privilege

I lied. I have one more thing about Komen that drives me away from supporting them. It’s the way they have treated metastatic patients over the years. It’s a story of privilege that others in the disability community and in other disempowered communities will probably find familiar.

Let me give an analogy. I am a white person. A really white person, like, loves ranch dressing, has Mayflower ancestors, whitey white white person. I am also someone who sees racial injustices, like the Indian Heritage High School program being dismantled in my city despite its many benefits to students from a community that needs and deserves support. Now, as a white person, I know I have a shitload of privilege, and the right thing to do is to use my privilege to help a community that doesn’t have privilege.

What’s the best way to go about that? Well, the way white people have done it for centuries it to say “I know what’s best for you and I will make the decisions and you will do what I say because it’s for your own good.” This would be the absolute wrong way to go about helping. First off, unsurprisingly turns out white people didn’t know shit about what’s best for people of color. They might have thought they did, but they didn’t, because they never fucking listened to the people they thought they were helping to find out what they actually need. Second, it’s fucking disrespectful to people of color to treat them like children instead of equals. 

Instead, what we white folks need to do is listen to communities of color. We need to hear what they want from us to help their communities thrive. We need to see them as partners in this multicultural society, and find ways to work together.

It’s a similar situation for people with metastatic breast cancer. There is so much in our experiences that is about a loss of autonomy–we slowly (or sometimes quickly) get sicker and sicker as time goes on, and cancer takes away our freedom of choice more and more. I often feel powerless in the face of my disease. 

Komen, and frankly the medical establishment at large, says it wants to help us, but too often it doesn’t ask us what we want. Komen continues to spend its vast resources on things that don’t save lives while saying “We care about you and we want to help you.” But until very recently, they haven’t sat down with metastatic patients and said “How can we best serve your community?” Instead, they have just continued to insist that early detection saves lives. But whose lives? Not mine. Not the 40,000 women who die every year. It feels very insulting, and very disempowering, when the largest breast cancer charity in America dismisses the very people it claims it wants to help. 

Slowly things are changing with Komen. They’ve been listening to some friends of mine, and I am grateful for that–and I hope they will truly listen and begin building bridges to the metastatic community. But their messaging about breast cancer being cured by screening, their lack of funding for research, and their lack of a sense of urgency about metastatic disease make it impossible for me to see Komen as an ally. Komen has a lot of privelege, and it needs to realize that it’s been treating metastatic patients disrespectfully. It’s time for Komen to listen to our requests and begin to take actions that show its commitment to partnering with the metastatic community that it claims it wants to support.

How Komen Must Change to Get My Support, Part 4

This is the last in my series, and I feel very strongly about it, so I’m going to use a strong language. I believe Komen is lying to people about breast cancer. What is a lie? It’s a deliberately false statement. It’s intentional, and it is designed to mislead. And Komen does it ALL THE TIME.

Would you like some examples to back up my claim? Here we go.

This image appeared on Komen’s Facebook page.

False. In 1980, the 5-year survival rate for ALL breast cancers, not early stage breast cancers, was 74.8%. The survival rate for all breast cancers today is 89.4%. In addition, the graphic doesn’t explain what it means by “early stage.” Are we talking only local cancers, and not regional ones? If so, then 99% is indeed the 5-year survival rate–but in breast cancer land, we usually we use “early stage” to refer to non-metastatic cancer, so the term includes both local (stage 1) and regional (stage 2 and 3) cancers. For stage 2, the 5-year survival rate is 93%, and for stage 3 it’s 72%. There’s a crapload of data like this available on the American Cancer Society’s website. Komen would be wise to review it.

Next up: here’s one from their website. They also hand this bad boy out at conferences for metastatic patients. There is so much here that needs unpacking, I don’t even know where to start. Maybe with the pie chart.

So, see the part where it says “early detection”? Yeah, that’s not research on metastasis. The definition of “early detection” is finding breast cancer before it has metastasized. Komen continues to perpetuate the theory that early detection saves lives, but the evidence shows that it does not. We’re detecting a lot more early stage cancers than we were 20 years ago, but the incidence of metastatic breast cancer has remained stable since 1975. So, that 10% of the funding pie that goes towards “early detection” is not for metastatic disease–it’s neither treating metastatic patients, nor preventing metastatic breast cancer.

I’d also put that $147 million dollar figure in the “misleading” category. It’s not false, but what they don’t say is that the $147 million dollars is over the entire lifespan of the Komen organization, all 33 years of it. If you look at the 2014 version of this document, you’ll see that the number is $133 million. $147 million sounds way more exciting than $14 million per year out of an organization that spends $278 million per year. I believe the choice to use a cumulative figure is deliberately misleading. Which makes it a lie.

Speaking of the 2014 version, see how it says that up to 40% of metastatic patients will survive 5 years? That’s false. The 5-year survival rate for stage 4 patients is 25.9%. I suppse we should give kudos to Komen for removing that lie from the 2015 version. So, thanks Komen, for lying one less time.

So, why is Komen lying? My guess–and it’s just my guess, but it IS an educated one–is that they believe that marketing hope is more lucrative than marketing reality. They think that they need to look like they’ve accomplished something with all the billions they’ve spent, or else people will stop donating. But the real problems Komen faces going forward can’t be cured by a marketing strategy. They’ll be fixed by honestly and humbly looking at the reality of breast cancer today–and then doing the work that needs to be done now, not the work that needed to be done 30 years ago. Lying to us, and to themselves, is not going to help Komen achieve its mission of ending breast cancer.