Update: Short and Sweet!

This is just a quick update but I knew you'd all want to know...For the first time I had pretty much only good news from my CT scans! Everything either stayed the same or got smaller - a lot smaller in some cases! 

For those interested in the clinical trial aspect I may post more details later; apparently any decrease in tumor size greater than 30% is a "partial response" and is a significant finding from a research standpoint. My initial tumor and my lymph node both decreased by more - closer to 50% - which is also good news for getting this on the road to FDA approval (and use in other patients). My doctors were, I think, almost as excited as I was.

I confess I was daydreaming that the cancer would just be GONE but I knew that wasn't realistic. This is the best result I could realistically hope for. I get to stay on the clinical trial and hope that things continue to shrink. 

Thanks to everyone for all the love and support - it made the wait a lot more bearable!

Scanxiety: And you thought the SATs were bad!

Hello from the land of Scanxiety!

That's a portmanteau that I learned from the online cancer communities I'm in that is (you guessed it!) a combination of the terms "scan" and "anxiety." It's what happens in the days leading up to and immediately following the imaging scans (typically CTs, sometimes PETs or MRIs) that cancer patients get to assess whether the disease has "progressed." Now, bear in mind that in cancer-speak progress is bad. Progress is from the perspective of the disease, meaning that it's been marching on ahead despite your best efforts to stop it. CTs occur every 2-3 months (or at least mine do...I assume if I had no sign of disease for longer they might be less frequent) and they are the metric that tells you whether the treatment you've been enduring--have been pinning your hopes on--is working. Or if it's not.

Basically, these assessment scans are the worst test you can imagine taking. You do everything you possibly can to prepare, assiduously infusing yourself with poison or swallowing pills that lead to instant (though manageable) acid reflux and nausea, trying not to care as your hair falls out or your muscles seize or the nerves in your fingers die. (All, let me remind you, "good" side effects on the scale of cancer treatment that I have been very "lucky" to get away with; these are relative terms but I've seen the alternative and they are still really meaningful to me.) You prepare and you suffer and you endure and you hope it's enough. You're fundamentally powerless over the outcome (unlike with any other test overachievers like me are used to taking) but you hope and you hope and send out pleas and prayers that it will be enough. And often it's not.

Every time I've had a CT scan it's been bad news. My report from January was the one that showed that the disease was metastatic (boy, was it ever!!). My report from March suggested that my previously safe liver had been affected after all. My report from June determined that chemo hadn't worked on anything except my lungs and that several tumors had actually gotten bigger. So you can see why I'm facing the prospect of news from last Friday's scans with dread and anxiety, despite there being some early indications that I can feel more optimistic about this treatment. On a very real, very visceral level those signs don't matter at all. No matter how well I feel or how well I seem to be doing all these scans have ever showed is that I'm still getting worse. Or as I might say, if I weren't so inclined to avoid upsetting the rest of you, that I'm still dying (slowly, but faster than most of you and far faster than any of us would like).

I've written before about how incredibly impressed I am with the science of the study I'm on now and I have far more reason for thinking I might get some good news out of it than from the default chemotherapy option. But the cold indifference of x-rays and the people who read them stands in such stunning contrast to the incredible amount of emotion associated with the process that I cannot help but expect its cruelty. And honestly no offense to radiologists--I even have friends who are radiologists!--who see thousands of these images and who must write dispassionately because it is their job. I get it. But it's tough to read as a patient, to see yourself anatomized and quantified, like a patient etherised upon a table.

If you want to know what one of these reports looks like--what I'm facing getting tomorrow (or today, August 20th) here are mine from back in June. (Keep in mind that this one even has a piece of good news in which is that two of the lung tumors are gone and the others got smaller.)

So when I say that I'm nervous about tomorrow you can imagine why. In the morning, as usual, I'll drive myself to Philadelphia to meet my doctors. Inevitably, 95 will have construction or an accident and it will take 90 minutes each way, a total of 3 hours alone in the car with my thoughts and either the anxiety and fear caused but NOT knowing or the potentially worse anxiety caused by knowing. It's times like these that I hate being single, being an only child, living alone. So often it's just this dynamic duo of me and my anxiety...and my goodness do I get sick of us!

Now, yes, I have wonderful friends and family who would fly out here in a heartbeat if I asked. But part of trying to maintain "a normal life"; to live as myself even while living with this disease, is to do things as I normally do them. And for the past couple years that as meant living singly, independently, and perhaps a little too entrenched in that fact. My parents can tell you that from the earliest age I wanted to do things myself and would tell them emphatically (a nice word for it) to leave me alone and let me do it. (They did. They do.)

I'm not so different as an adult. I didn't want anyone to think, as a child, that I couldn't do things for myself and some core part of me has never gotten past that. But what I understand now that I didn't then is that just because you can do something doesn't mean you have to. (I do have friends here who have gone with me to appointments in the past but I have now developed a silly conviction that they have done enough and should not be bothered further.) Still, it's hard to put this into practice and ask for things. 

What's more, it can be hard to know what to ask for. Or, even if I know that, say, it would be fantastic to have someone else drive at least one way to or from Philly sometime, it can be too hard to ask for it because it seems like too big a favor. Because accompanying the childhood conviction that I can do it myself is a longstanding fear of being too much. Many women struggle with this, I know, and I won't say too much about it now. But I will say that it pairs either very badly (or very well, depending on your perspective) with the drive to look capable and reliable, to seem in control no matter what the situation. Even if the situation is literally threatening my life. I can do it myself. But should I?

It's much easier to accept an offer than it is to ask for something, not least because it relieves the burden of emotional labor involved in figuring out what to ask and in overcoming any hangups about asking for it. If you're in a position to offer something--to me or to someone else going through something rough, whether it's illness or grief or something else entirely--consider doing it. We've all looked at a menu enough times to know that sometimes you don't even know what to order until a friend suggests it. Look at the menu for someone you care about and offer them something. (But also be ok if they turn it down because it just doesn't appeal...we've all had that menu experience too.) 

I suppose I've wandered off track (and maybe now feel a little hungry) but I wanted to remind myself that you're out there and to try to share just a little of the mental state that I exist in most days now with you. Thanks for coming on this ride with me. I'll share whatever news I have as soon as I'm able. 

Love,
Rebecca