During this stretch of winter I imagine that I will always be mindful of the events of two years ago, from my cancer diagnosis on January 20th to my surgery and staging on February 22nd. Perhaps “mindful” isn’t quite the right word, because in truth during that month I was not paying much attention to the cancer per se or what it might portend. Instead, I was thinking about my work obligations and how best to set things up for them to make it easy for my employers during my six weeks of medical leave.
Very little turned out how I expected, in fact. The surgery showed a much more advanced cancer than anticipated. I was basically fired instead of being welcomed back to work, with accommodations for chemo. And on, and on.
I do have some other topics planned for the next couple of weeks which will not belabor my anniversary season. But for tonight, I invite you to look back with me at how things were for you when you first started having to deal with cancer.
If you are inclined to share your diagnosis, dates, treatment(s) and current status, that’s also fine. I’ll list mine below. What I am more interested in learning from you, however, is the difference between what you planned for when you first heard the bad news, and what actually happened when you got in the middle of things. Come to think of it, I have one more general question to ask, if you don’t mind: what do you currently find to be the most challenging aspect of dealing with cancer? Or the top two or three, if limiting it to one just won’t do?
All right. Here’s the rundown on my diagnosis and treatment; my apologies in advance to those who are already familiar with it. I received a diagnosis of endometrial cancer on January 20, 2011, had a hysterectomy on February 22, and learned thereby that the cancer had spread to my para-aortic lymph nodes, making it a Stage IIIC2 cancer (just short of Stage IV). I had six rounds of doxorubicin and cisplatin between March and August, 2011, and was headed into external pelvic radiation when lung mets were discovered. At that point, radiation was moot and my oncologist suggested a hormonal treatment, Megace, instead. I began supplementing that allopathic treatment with several complementary therapies, including Ayurveda, acupuncture, yoga, qi gong, deep breathing, and singing. (For a while I was also a vegan, and I had some Reiki sessions, but neither approach is now in my active repertoire.) My lung lesions began to shrink almost immediately and I officially achieved NED (no evidence of disease) status in June of 2012.
What I planned for, and how it was different from how things turned out—please read on after the jump.
I thought at the time of diagnosis that the surgery would address the cancer, that it would prove to be small and contained, and that no further treatment would be necessary. I thought that my employers would make reasonable accommodations to deal with my chemotherapy treatments, once I learned they would indeed be the next course of treatment. (And yes, at the time I did not consider refusing chemotherapy.) I thought that chemo would be arduous but not all that difficult overall. I thought that having cancer would be a relatively short interlude in my life, and then I would get back to my old routine and my old self.
I certainly hope to have learned a little humility through this experience, since indeed nothing turned out as I expected. Now, I will admit that it is probably also just as well that I no longer follow the routine I had before I became so ill; in retrospect, I have no idea how I managed to do it, except through lots of caffeine, junk food, lack of sleep, stress, and denial.
I think I have two major issues facing me right now as my recovery continues. The first concerns our finances. I’m not sure what financial stability will mean for us in the next year, let alone in the next five or ten. We manage month-to-month, and for the time being that will have to do. I suppose I am a little more sanguine about our precarity than I once was, but it continues to be seriously stressful for both my husband and me. I need to start bringing in some regular income, even if it’s small.
The second is resisting complacency since I have achieved remission. All around me—in my support group, in my online discussion boards—I see people who were doing well at one point and then had a relapse. Of course, people who participate in such groups are a self-selecting cohort; few people who do reach the all-clear and then sustain it hang around cancer support networks. So that skews the pool, I realize. On the other hand, there are also those who had the all-clear, and then suddenly experienced a recurrence which they were not able to beat. Our own alliedoc is an example of the latter situation.
In other words—I have a lot of external reinforcement for staying on top of my rehab program. Internally, it’s not as easy to maintain my focus when the goal I am pursuing, continued remission, is in a way so amorphous.
That topic may well be one worth discussing all on its own, but for tonight I’m content just to leave you with these two major questions: What did you expect at first? What are your biggest challenges now?
Please feel free to respond to these as you see fit. Let me also remind everyone that the diary topic is not intended to exclude discussion of other issues that are pressing for you.
We have two MNCC members who are undergoing lung surgeries this week: murasaki today, and DarkHawk98 tomorrow. (Here's the link to DarkHawk's diary about his quilt, with photos!) I will be keeping them both in my thoughts and prayers. If you are inclined to send virtual support to them in any form, I imagine they both would appreciate it.