About a year ago, I felt sicker than I’ve ever been in my life. I was bleeding heavily (hemorrhaging, actually), enduring cramps and migraines on a near-daily basis, and generally felt as though I’d been steamrollered. Now, feeling as ill as I did, one might wonder what I was doing to take care of myself. The short answer would be: nothing. The long answer would be slightly more nuanced, but the overall description would be the same or worse. I was working at a job that I disliked, one that required a 60-minute commute each way. I had no regular recreation other than singing in a community choir—which rehearsed a good two hours from my workplace, and an hour from home. I did not have any sort of exercise routine, and my eating habits were not conducive to good health, shall we say. I was a good 20% over my ideal weight, and while I regretted the relatively recent decline in my overall fitness I didn’t see any feasible way to get better. At least I didn’t drink or smoke, but that’s about the only positive contribution I was making toward good health.
And then I was diagnosed with endometrial cancer. I imagine that most of you can relate to my utter dismay, so I won’t describe it here. But more importantly for my purposes today, I had no idea what to do next. (Perhaps that would be a good topic for a diary: what to do upon first hearing the bad news. Any takers?)
Right after receiving the diagnosis, I thought that my upcoming surgery would resolve the whole problem. Instead of thinking about what I could do to prepare myself for a successful surgery and recovery, therefore, I concentrated on making sure my workplace would be in good shape during my medical leave. Right after surgery, I discovered that my condition was much worse than anticipated—that chemotherapy and possibly radiation would be required. At that point, I did begin to investigate what I could do to start helping myself recover. But other than following the oncologist’s directions, which were surprisingly limited, I had few ideas about how to live differently. That is, about how to live my life in a way that would foster my recovery, not hinder it.
I didn’t do much while undergoing chemotherapy, in part because what I had read about mostly involved consuming large quantities of anti-oxidants, which gave my oncology team serious qualms. Unfortunately, my six months of chemotherapy didn’t work—which made the whole context shift yet again. Only then did I realize in my heart of hearts that it was going to be up to me to take charge of my healing, and that I had better get started on it.
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 NEW TIME: 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.
It’s been a steep learning curve for me since the summer, and I’m sure that I’m not yet at the end of the rise. Retracing my path of inquiry would take me some time, and although that might be useful at some point it’s not my focus now.
In today’s diary, I’d like to outline what I’m doing on my own behalf on a daily (or at least regular) basis above and beyond following the oncologist’s treatment plan. [As a brief reminder: I’m taking 160 mg. daily of Megace, an artificial progesterone, to help prevent my tumor cells from taking up the hormones they appear to thrive on. This particular therapy has a reasonable, if unpredictable, response rate in terms of both progression-free survival and overall survival, especially in women with lung metastases. My oncologist has had women on it successfully for several years, while second-opinion oncologist has not had such good luck with it. Even so, the strength and rapidity of my response to the treatment was beyond my oncologist’s expectations—and makes me think there may be a synergistic effect from all the therapies I’m trying.] I’m hoping to start a dialogue thereby about
1. what we are each doing to care for ourselves during our illness and recovery. I’m curious also about
2. where the prompt for your remedies or supports came from, if you can recall, and how you see them having an effect. It does not matter to me whether you consider the benefits to be physical, emotional, or some combination thereof. I would also like to know, if you’re willing to share,
3. how much time you spend on various aspects of self-care, and how you manage to keep doing them regularly (if, in fact, you do). Lastly, and perhaps the most nosy question of the bunch:
4. what gets in your way of implementing the strategies that you believe are beneficial to you?
Let me observe from the outset that the regime I’ll describe is my ideal one, which I actually approach only a few days per week at best. The closer I come, the better I do feel—but that isn’t always sufficient incentive, alas. I’ve made huge improvements over where I was last year, but I still tend to put my self-care somewhat lower on my priority list than I’d like.
To me, that’s the bottom line: I’ll try just about anything if it seems to help me regain my health, and I’m far more willing than I expected to try unconventional methods. So far—fortunately—I have indications that what I’m doing has been helping me. However, my methods are not—unfortunately—universally applicable. One of the worst aspects of cancer treatment and recovery is its seeming capriciousness, since what may work for one person is often useless for another, even if they have the “same” condition. In the spirit of humility and sharing, then, I’m offering this extensive description of what I’m doing in order to promote general discussion.
I’ll start with the basics, namely sleeping, eating and hydration.
I’m aiming to sleep at least 8 hours per day, with a bedtime no later than 10:30 PM and maybe one nap. My achievement of this goal is spotty at best, though I’m grateful for sleep-in mornings. I can and do nap as necessary. Oddly enough, I have not experienced disrupted sleep through this whole ordeal, with the exception of enduring persistent night sweats. It’s hormone-related somehow, but no one seems to feel it’s a very big deal, including me.
My diet has become much simpler and plainer than it ever was. I’m following a limited vegan diet, which for me involves avoiding animal products almost entirely, as well as all soy products (because of the phytoestrogens, a controversial factor for estrogen-responsive cancers). I try to emphasize raw/living foods for at least one meal per day (e.g. salads with sprouts for lunch and/or dinner). Again, that’s better as an ideal some days; last night, I went out to dinner where there were no vegan options, and so I ate broiled salmon and vegetables. I’m also striving to limit my sugar intake as much as possible, which for me applies not only to refined sugars but also to carbohydrates. I aim to consume very little white flour, white rice, and white potatoes (the hardest to forgo!) This is definitely tough for me during this time of year, what with Christmas cookies, holiday buffets and the like, but so far I’m holding firm (with one notable exception). I’ve concluded that I need to take at least one dish I can safely eat to every function, and not worry about offending the hosts.
My water/liquid intake is still probably not as high as it should be. The oncology nutritionists told me I should consume ½ oz per pound of body weight, which is a quantity greater than 64 oz., let me assure you! Between the 32 oz. of Ayurvedic herbal tea plus the 32 oz. of organic carrot juice I’m drinking every day, I get pretty close. But water’s never been my favorite thing, so that’s not an easy target for me to reach either.
Next, movement and exercise.
My Ayurvedic healer first urged me to spend at least 30 minutes outdoors every day, soaking in the late autumn crispness and savoring my own place in the natural world. With the worsening weather and shorter days, that’s less of a priority, but I still appreciate the encouragement to get outside. For one thing, it’s a wonderful diversion, trying to track down the birds from their songs or identify the sources of the scratching in the underbrush. And for another, I do enjoy the chance to breathe the good, fresh air available in and around my Midwestern town.
Speaking of breathing, that’s the other major priority (after sleeping) for my Ayurvedic healer—at least two 30 minute sessions of deep breathing every day. I promised her last week I’d strive for that; so far, I’m not doing so well, because I keep falling asleep instead! But that’s probably a desirable outcome too.
On a weekly basis, I attend T’ai Chi, yoga, and qi gong classes. The 60 or 75 minutes for each is relatively easy to accommodate, though I have not yet learned how to incorporate the principles and movements from any of them into my daily routine. That’s a goal for Winter.
During the academic year, I sing with a community choir. That entails a weekly rehearsal of 2 ½ hours, and (ideally) 30 minutes of practice every day. I’ll take the 5th regarding how close I come to meeting that target.
Next, other body care.
Again, on the advice of my Ayurvedic healer, I’ve been visiting a local “spa” where they have infra-red massage beds. A monthly fee for a daily half-hour session breaks down to about $2.00 per day, so I’ve been pretty consistent about getting there 5 days/week. I have noticed improvement in my overall flexibility, especially in my lower back.
Upon going to bed every night, I am supposed to oil myself—hands, feet, back and torso—with a base oil containing herbs and then a sandalwood overlay. I have no idea how effective this is, but it feels great, smells terrific, and clearly helps me sleep.
Emotional/spiritual care.
I pray erratically, but my favorite prayer routine is to recite Compline from the Anglican Book of Common Prayer. It is very comforting to me, the notion of being part of a worldwide group of people of faith who draw upon this particular set of traditions.
For the past six months or so, I’ve attended a weekly guided meditation group that is led by a wonderful, generous practitioner, and I snatch moments throughout my day to implement the techniques that she has taught us so far. We’ve done a little bit of work with visualization, and I like the imagery I’ve chosen to represent my cancer cells and my body’s defenses against them. Again, I attempt to concentrate on those images at least a couple of times a day, often when I’m doing something related (like breathing, or oiling).
Every Monday morning, I participate in a Cancer Survivor support group hosted by the local Cancer Support Community organization. We’re pretty cohesive, and we do a reasonably good job of helping each other through tough stretches.
It’s not exactly obvious to me how to classify Reiki, but I suppose this is the most fitting place of all the categories I’ve named so far. I’ve experienced three healing sessions since late October, and while I cannot document their effectiveness physically, I can attest to the emotional (and spiritual) boost they have given me. After the very first one, for example, I found that I was no longer as anxious as I had been in the wake of hearing that my disease had progressed. For whatever reason, my capacity for worry and doubt had acquired limits, and I became much less vulnerable to paralyzing fear.
Complementary medical care.
Since late September, I’ve been consulting both an Ayurvedic healer and an acupuncturist once a week or so. Traditional Indian and traditional Chinese medicine are compatible enough not to cause difficulty, and my oncologist has no objections to either one. (She agrees that I should keep on doing what I’m doing.) The acupuncturist has helped my peripheral neuropathy in both feet decrease to almost nothing, and I believe the immune system support she provides is useful, too. The Ayurvedist does body and energy work in addition to prescribing teas and oils, and I feel confident that her interventions are positive as well.
How much time does this require?
If I did everything I am “supposed” to do, it would take at least 4-5 hours per day—averaging in the weekly workshops, but not counting sleeping, and not counting food preparation. In practice, I probably manage about 3 hours worth every day.
It would be far more challenging to reach my self-care goals were I still employed full-time, though I do know that people manage to do that and still attend to their recovery needs. Since I’m not, however, I must admit that I still don’t do as well as I might in putting my health first. In the family, there’s always someone else who needs something more urgently, it seems. Sometimes, I’m just lazy or inert; sometimes I get too sucked into easier pursuits (including reading Daily Kos!) Most of all, I guess, I’ve simply never been good about adhering to routines and structure. That aspect of my personality—whether it’s rebelliousness, ADHD, lack of confidence, or something else—is truly not my best quality, and it’s probably a good time for me to address it.
By the way, apart from the Ayurveda and acupuncture treatment sessions themselves, the financial outlay for these remedies is modest, probably around $120/month. (Perhaps this, too, could be a topic for another diary--on how to make do with less and less, post-diagnosis.) I am exceedingly grateful for the presence of a Cancer Support Community site in my area, which helps sponsor several of these activities for which I pay nothing. The cost for the complementary healers is not small, but it’s also a subject for another day.
I’m interested, and I know other people are as well, in the range and variety of therapeutic self-care methods we all use. Please do share what works for you (and, if you like, what you’ve tried that hasn’t worked).