Some of you may have noticed that in the past few weeks we've not always included the phrase "Monday Night Cancer Club" in the diary title. No way to tell for sure, of course, but ZenTrainer and I surmise that the regular diaries might get more attention if they're not labeled with "cancer" so clearly. Perhaps that's intimidating? Perhaps the word "club" puts people off? It might not be obvious to new folks that we're not a closed group.
Anyway, it's back today, because this seems to ZT and me to be a good time for a Roll Call. We do this to check in on each other, and to remind ourselves what the past year has brought us. I fervently hope it's been good news for each and all of you, though I do realize the odds are sadly against that result for everyone.
It's personally a good time for me to reflect. I can hardly help it, since this is anniversary season for me: Four years ago tomorrow, I got the cancer diagnosis, and the world turned upside down for me and my family.
Here's my story, in semi-clinical terms, quoted from my diary of 1/13/14:
I was diagnosed with grade 2 endometrial adenocarcinoma three four years ago next week tomorrow, and I had major surgery (hysterectomy and bilateral oopherectomy-salpingectomy) shortly thereafter. During surgery, several pelvic and para-aortic lymph nodes came back malignant, which meant the cancer was at a Stage IIIC2, or just shy of Stage IV. Three weeks post-surgery I started six rounds of chemotherapy (doxorubicin and cisplatin) which caused me to lose my hair, endure a bout of neutropenia, and suffer peripheral neuropathy, but didn't apparently have any effect on the cancer. A CT scan in August of 2011 showed lung mets, a deeply shocking and frightening development. Immediately thereafter I embarked on an exploration of complimentary treatments, including Ayurveda, acupuncture, meditation, visualization, yoga, breathing, meditation, singing, and a variety of dietary changes. All these remedies, along with a hefty dose of Megace, an artificial progesterone, per my oncologist's recommendation, brought me to NED (no evidence of disease) status by June of 2012. In retrospect, that seems like a very quick response. At the time, those nine months seemed like forever. I've remained in remission since, and I hope to remain there for a very, very long time.
In October, 2014 I went off the Megace, having tapered down several months and at least one CT scan earlier. There's still no sign that the beast has returned, and my oncologist thinks at this point the risks outweigh the benefits of staying on it. Besides, coming off of it now may mean it retains some efficacy in case it's needed later. I've tapered off some of my other interventions, too, though I hope to re-establish some of them as well. All summer and fall I was so busy with my household move, I let some things slide. Now that we're pretty settled, it's time to get back to more yoga and meditation, among other health-promoting practices.
I still have chronic cancer-related fatigue. But going off the Megace means my estrogen levels have rebounded a little bit, and that's helped my osteoarthritis a little bit. Or so I hazard. A little estrogen in my system does seem to have all kinds of positive effects, and I hope it isn't enough to fuel a resurgence of the cancer. We shall see.
So, how about you? Anything you care to tell us about your diagnosis, treatments, current state of health would be welcome. (It's fine if you're relating it to your experience as a caregiver, instead. Or too, in some cases.) This is also an Open Thread if you have anything else you'd like to bring up to the group.
Note: MNCC diarists wanted! If you have something cancer-related to write about, please consider posting it from within the MNCC timeslot. We love to share the wealth. ;) Just drop ZenTrainer or me a Kosmail, and we'll get you set up.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7:30-8:30 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.