The idea behind a roll call is primarily for a check-in. How are you doing, in other words, and what's new with you?
But this time around I'd also like to ask for as much medical detail as you feel comfortable sharing about your diagnosis and treatment. I'm not too squeamish, though some of us might be.
On top of that, I'd like to ask a couple of other nosy questions: what has changed most for you, both positively and negatively, post-diagnosis?
I realize as I write that all this is phrased in such a way as to emphasize the MNCCers here who have cancer, not the caregivers. But I can imagine answers for these questions that would parallel those with cancer, so please don't hold back if you are a caregiver. And besides, you can always be creative with your response.
I was diagnosed with grade 2 endometrial adenocarcinoma three years ago next week, and I had major surgery (hysterectomy and bilateral oopherectomy-salpingectomy) shortly thereafter. [Edit: 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.
I'd say there is one major physical change that has affected every aspect of my life post-cancer: fatigue. ZenTrainer mentioned how it impacts her life in a MNCC diary last week; most of what she wrote sounds painfully familiar. So most days I try to get in a good nap, and when I do I feel better, though never fully energetic. I do miss my old self, but I also recognize that I never used to know when to quit.
Apparently fatigue is the number-one complaint of cancer survivors, which if it doesn't make me feel better--all those other people suffering through this too?!--at least makes me feel that it's a real consequence.
EDIT: I would like to quote extensively from the NCCN (National Comprehensive Cancer Network) Guidelines on Cancer-Related Fatigue, but their website is rather fierce with their objections to any reprinting. Suffice it to say by way of introduction that they think the problem is a real one for patients, the most troubling of all cancer’s effects, and that doctors have a responsibility to respond with support.I have experienced one major emotional difference, or so I would say myself; my family might disagree. I feel less driven by perfectionism. At this point, I'm lucky to get things done at all, and if I fussed as I used to do over the lack of perfection in the finished product, I truly would do nothing at all. That aspect of my former self I do not miss.
It is a wee bit difficult to access their website, but much of the content (even for providers) is free. I did not register as a provider but as a cancer survivor, and I still can view some of the clinicians’ resources.
So to start, go to the NCCN home page, NCCN.org, and sign up for a free account. Once you do that, you can go to the first tab, NCCN Guidelines, and pull down the menu. Click on the NCCN Guidelines for Supportive Care, and then you’ll see the option for Cancer-Related Fatigue.
(Of course, you can surf the site for other resources, but as someone who read A LOT about her cancer when I was first diagnosed, let me tell you it’s something to be approached with caution. It’s akin to politics and sausage-making, if you catch my drift.)
The other major circumstantial change is that I am not working for pay, at least not right now. I lost my job shortly after my diagnosis, and that was not an easy matter back then: it presented just as many difficulties (less money) as advantages (more time). I DO NOT KNOW how single people, or those who are the sole supporters of their families, survive a serious cancer diagnosis without enormous financial strain; it is no picnic to be very sick and to have no safety net. It's hard enough for people who do have family support (which is nothing to take for granted); again, one of the major problems that most cancer survivors face is financial hardship. Loss of income, loss of benefits, plus increased medical costs--that's a recipe for catastrophe for almost everyone.
It's been liberating, in a sense, as I have been able to focus on regaining my health and supporting my younger daughter, who has had many troubles of her own these past few years. But it's also been destabilizing to lose, or at least recast, my professional identity yet again. I'd been one of those people on their fifth or sixth act already, though, so I guess this is not really new. And it's also resulted in greater pressure on my husband to be nearly the sole provider now instead of one of the co-earners.
That's my story in brief. Please feel free to share with the rest of us how you are doing and what are the biggest changes you've had to handle so far.
Or, if you prefer, treat this as an open thread. Nothing is off-limits here when it concerns your health, your sanity, your hopes and fears.
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 7-8 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.