Eleven
Category: Duct Tape and Prayers
living with cancer
I Don’t Wear Scarves (Memoriam: Mom)
It was warm and hazy when I woke up this morning, the room oddly yellow for the time of year, motes floating lazily through the dayspring light. Blinking sleepily, I saw Mom laying next to me, saw her smile, saw her stroke my hair and say hello, good morning, get up, you’re going to be late, goodbye, don’t let the bed bugs bite.
I blinked twice.
She was gone.
Don’t cry, there’s always a way
Here in November
In this house of leaves we’ll pray
End of Year Reflections – Or, Why You Can Blame Carl
In my religious tradition, the end of the year is a time for reflection and contemplation; what happened over the course of the year, how will it influence your upcoming year, what lessons did you learn, how will those be implemented, and so on. It’s generally a relatively quiet thing – and yes, should be done according to the lunar calendar, but I’ll be the first to admit that I’m going cultural on this one.
And so, it was with reflection at the end of the year – admittedly done in an earlier time zone, since I actually spent NYE in Brooklyn with friends – that I tweeted a simple but very heartfelt sentiment: You know, Twitter basically changed my life, several times over, this last year.
Almost all of the opportunities I’ve had this year, I can trace directly to being on Twitter. Now, of course, there’s the Seneca quote that says luck is when preparation meets opportunity, and some could argue that my preparation was key to jumping on opportunity, but the reality feels quite different for me. What I experienced was reaching out to a new world of people who were warm and welcoming and encouraging, and gave me just the smallest pushes I needed to start pursuing dreams I didn’t realize I still had.
One of the biggest examples of this would be a random discussion with science artist Michele Banks that ended up looping in Bora Zivkovic, the blog editor at Scientific American; one thing led to another and I found myself being strong-armed, in the nicest way possible, to submitting a proposal for a Science Online. Which led to my proposal being accepted, and introduced me to my co-presenter, Judy Stone, an internal medicine and infectious disease doctor with a speciality in clinical trials who also writes the utterly marvelous SciAm blog Molecules to Medicine, where she has most recently been tackling the Dan Markingson case.
Another example would be Paul Knoepfler. Paul is a researcher at UC Davis, and he also runs the amazingly informative blog IPSCell, which is a must-read for anyone interested in stem cell research. Paul covers it all, from explaining the latest journal news in accessible terms to covering the often contentious legal issues of the field. I didn’t realize just what a rock star Paul is in the field until I was at the World Stem Cell Summit in Florida, though. He really is that guy who is always surrounded by people who just want to say hello so that they can say they’ve said hello to him. I consider myself really lucky to have such an influential person telling me you know, I should keep writing, I say interesting things.
This in and of itself – being accepted by science-y types on Twitter, talking to really interesting and fun people without feeling self-conscious – would have made the year amazing. None of this, though – talking to any of the people already mentioned, or the numerous other interesting and intelligent and engaging science and ethics and research types that I do talk with on a near-daily basis – would have been possible if not for one person: Carl Elliott.
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Not a Privilege but a Right
A version of this post should have been up before Christmas, but technology decided to take a holiday a bit before the rest of us.
…and then there was the time the WordPress wasn’t actually publishing posts, and things got behind, and then it all just seemed like such a big mountain to crawl out from under. Also known as “what I like to call the last two weeks.”
First and foremost – and with apologies, since I did really drop the ball on notifying people – I did receive word that my biopsy results were negative and I am, thankfully, cancer-free. My doctor was also able to rush the results, so I found out prior to the holidays, which was also a relief.
It was a very strange experience, though, in that it forced me, for a week, to once again contemplate mortality and the specific desires I have for life. Also, as a friend of mine noted, it was one of the instances where, all things wrong with the American health system that there are, the fact that I was being treated here and not in the Canadian health system was a blessing, because it was a fast process.
And actually, still is a fast process. There are obviously still “body is not functioning right” issues going on, and this afternoon will hopefully resolve a lot of that. So I’ve gone from concerned issue to ultrasound to biopsy to results to treatment inside a month – that’s a time frame that really is enviable…and it’s a time frame made possible by virtue of having startlingly good health insurance and living in a place where, while I do have to pay for that health insurance, one of the benefits is access.
That access is an important thing, because just a few years ago, I didn’t have that access. I didn’t have health insurance for a few years, and prior to those years, what I did had didn’t even cover a wellness health visit outside a very overcrowded campus health center that wasn’t equipped for anything but colds, flus, and sexually transmitted diseases. I shudder to think of the process then – deciding whether or not to seek out care, or if this is just a discomfort I could live with. What if the biopsy result had been positive? In my current position, it would have sucked, but I have family nearby and loved ones willing to come take care of me, and access to top-of-the-line hospitals and people who will make sure that I receive excellent care (or else).
A few years ago, none of that was necessarily the case – especially the access to care.
I am privileged. I didn’t have to live with the stress and concern and fear that happens when you get a bad test result back and fall into that wasteland of waiting. I knew that, should the result be a bad one, I would have excellent and aggressive health care waiting for me, and that I would ultimately be in charge of the decisions made, and that what happened to me wouldn’t be based on limited services or access or my ability to pay (or not). These are the sorts of privileges a lot of women don’t have – especially low income women living in states where legislature is actively working to shut down what is often the only existing source of women’s healthcare: Planned Parenthood.
I was able to usher in the start of the year with toasts of “fuck cancer” – and it is the memory of that relief and that privilege that, in part, continues to motivate my political activism, support of the Affordable Care Act, and donations to various women’s health and activism organizations, including Planned Parenthood.
Because no woman should have to wonder “cancer” without knowing that, if it is, there is easy access to care and support. “My body is broken and needs fixing” should not be a privilege but a right.
Found Those Million-odd Pieces
Oh, I was doing so well until I wasn’t. But at least when I wasn’t, I was really committed to it.
I’m not sure what threw the anxiety into overdrive today, but by about 10am I was a quivering mess. And once again, it wasn’t so much the potential diagnosis as it was not knowing what was going to happen in the afternoon. I suppose my primitive brain assessed threats and figured that not knowing this afternoon was a more immediate concern than what may come from that test.
As for the biopsy itself – well, I had been tempted to live tweet it. Let’s all be grateful I didn’t, as I would have had to expose you to proof I’m a sailor’s daughter (I certainly swear like it), and then probably just would have slipped into somewhat mindless screaming. It seems that my cervix is as contrary as the rest of me, and a procedure that should have taken five minutes took closer to 25, and involved seeing stars at several points – and not the fun kind.
Never have I been so grateful for the deep breathing practices of my religion.
Of course, all this means is that the first step is done. The ob/gyn was honest: she’s not sure what’s going on, but the ultrasound images are concerning. The next step is the biopsy results, and from there we’ll figure out options. The results themselves won’t be in for a week, perhaps more at this time of year. I’ll call Thursday and she’ll either have the results or know when I should expect them.
Which yes, means that at minimum I have several more days of riding the roller coaster of anxiety, wondering if my bitchiness is the inherent or stress-induced variety, and trying not to overreact too much in the opposite “experience all the things” way.