What I've Done Right

Sometimes it seems like I'm doing everything wrong.  Remember, like, forever ago?  When I wrote these little rules to live by?  At the end of the day yesterday I thought back on those and realized I have totally been ignoring every last one of them.  I have been working too hard, pedal to metal, running late to everything, spending time with too many people who vex my spirit.  I was dispirited, anxious, tired, pissed off at myself, and utterly exhausted.

It took me feeling like that for two days and one really bad night before I realized what the problem was: I was listening to my head saying "Hey, it's the end of the round, so you must be back to normal," rather than listening to my body which was getting progressively more and more ground down and pissed off.  I was making and keeping social appointments, booking myself to work long full days, going to all the meetings, working my brain and body overtime, and packing everything in like -- yes, like a truck -- before I go back into for my fifth (and last) chemo tomorrow morning.

By the end of yesterday, I was fully aware, with vibrant clarity, that I am still in chemo therapy, I am still suffused with poisons, I am still tired and beleaguered ... and I was was failing, totally, miserably, in my quest to listen to myself and take care of myself first.  I basically had reverted my ass back to square one in terms of wisdom, enlightenment, and healthy living.

Which is ironic, since I started this blog, like, Tuesday morning and titled it "what I've done right." It seems like ages ago.  But, at the time, I guess I was just so tickled and proud of myself for having weathered all this chemo with the grace of a dancer, the nobility of an eagle, and the BAMF-ness of, well, a BAMF.

Hubris is a bitch.

AND.... I do think I've done some things right.  Considering all the horrible things that sometimes happen to people going through chemo therapy, I think I must have done something right mainly because of all the horrible side effects and miseries I do not seem to be suffering too much (except for when I stop listening and just assume I'm 25 years old again and have the stamina of a train locomotive). 

During the first four rounds (knock on wood), I have had no mouth sores, no lymphedema, no weight gain and my skin is clear and toned.  Except for the bad moment the very first weekend (with the migraine and the ibuprofen and the nausea meds that caused headaches), I have never once seriously considered vomiting.  I really love (really) being bald, although I am very interested to see what having hair will be like again.  (Knowing me, I'll get it first back in all the wrong places and then, when the follicular health has nowhere left to go, it will deign to sprout a few tendrils up top.)  I've no neuropathy (yet, knock on wood, again.) And I've avoided any kind of sickness or infection, so far.  I don't want to jinx all this.  But, in the big spectrum, I've come out very lucky overall.

Mostly, on the good days -- I feel really great.  I'm moving better, my body feels (at times) like it's kind of exploding with health.  I do have several annoyances, like a lingering raw throat and constant eye twitches that make me feel somewhat feral.  It could be that just not feeling like shit now feels like feeling great... but... I'll take it.  Sometimes I really feel like I feel great.  I biked four miles the other day with Spencer (not a marathon, but it's double what I was able to do three weeks ago).

And the bad days are bad.  I don't want to underestimate how truly awful I feel on the bad days.  There will be a time in the next 48 hours when I feel my life force drain away, and I'll descend back down into the underworld.  If anyone wants, I'll be happy to describe exactly how that feels, although I probably have in these blogs, more times than I can remember.  So, it's not a walk in the park.  It's brutal as hell.  And it makes the good days really really good.

So, to whatever extent I've ducked the bullet, besides just being lucky, and to whatever extent a list like this is worth writing down... here's what I've been doing to keep body and soul together.

1. First and foremost: I've kept moving.  Two 15-minute walks a day with the dog.  Nothing radical.  Just getting out in the world has made a HUGE difference.  When I can move more, I do. I bike at least once a round, towards the end, and it reminds me of that indescribable freedom of riding, and how healthy you can feel after just a few minutes of pedaling, and it's like being momentarily transported to another plane.  Movement has, really, what's been keeping me feeling so good.
2. Yoga.  Once a week for awhile, and now up to twice a week.  Another huge difference.  No crazy hot classes... but two good gentle therapeutic restorative sessions a week has made my body feel like it's young again.  I'm moving better than I did before I was diagnosed.  Go figure.
3. Diet.  No sugar.  Very limited dairy.  Lots of veggies, can't get enough of them.  More fruit than usual.  Protein -- including red meat.  Lots of salmon and fish.  No alcohol.  Some carbs but not as many as before.  Mostly, it's the no sugar.  That changes everything.  
4. Supplements.  Every day: Probiotics (I think this has helped immensely with keeping my digestive tract in pretty good shape), 5000 IU of Vitamin D, a Vitamin B Complex, an Alive multi-vitamin, an Omega 3 fish oil capsule, Imunsano (an herbal blend for the immune system, made of mushrooms, available online).  (My oncologist nixed any other type of TCM herbal remedy and... in the big picture... I'm glad I complied with his wishes.  I certainly don't want to have anything inadvertently subvert the treatment.)
5. During the Taxotere infusion of chemo: I hold ice in my hands packed in baggies, and have two baggies of ice on my toes.  It could be totally bogus... but the idea is that the ice keeps the chemo from infiltrating my fingers and toes.  My nails are fine (sometimes, apparently, they get brown and/or fall off), and I've had no tingling or pain that could indicate neuropathy.  I also chew on ice chips, which may be why my mouth has avoided sores.  (Full disclosure: there are days when it feels like my mouth has been rubbed into a weird roughness with sandpaper... so, it's definitely not perfect... but no sores or any of that.  So far.)
6. When I can, I swish and gargle with a baking soda/salt/water solution.  I did that in my earlier days, pretty religiously, and I think it helped a lot.  I have had more of a raw throat since I got lazy and stopped doing that.  Hopefully I can do some more of it this round and feel better faster.
7. Moisturize, moisturize, moisturize.  I've turned into a proper girl now, and slather large amounts of lotion and other unguents after bathing.  It helps.  My skin is looking better than ever, and there are some really cool lotions out there that really nourish and tone and smooth and all that good stuff that I never really paid attention to before.
8. Working in moderation.  Working has been very diverting.  And -- thanks to disability (which you can do in conjunction with partial wages, as long as you don't exceed your regular full time income) -- I have been able to work part time.  For the most part, I'm very glad I continued to work through all of this.  It keeps me feeling like I'm not a full citizen of the underworld.  And (OK, I am glossing over a lot of annoying shit, but overall) it's pleasant and good to be out in the world a little bit.
9. Writing.  Giving myself permission to write again, and being encouraged to continue from so many of the readers of this blog has been one of the biggest lifesavers of them all.  More profound than I can find words to express at the moment.  Facing my own mortality put a lot of things into perspective.  Writing can no longer be optional.  I have a lot of words left in me and it's high time I start letting them come out.

That's a short  list of what I've done for myself, but the list of what other people have done for me is inexhaustible.   I have been so well supported by so many people -- family, friends, co-workers, nurses, doctors -- I mean, it's ridiculous.  I will have to repay, somehow, some way, all this love that's come my way.  Or at least write a 40-page blog listing everyone and everything they've done.  It's been... staggering.  From the weekly cards I get from my friend Gail in the UK, to the cheery good mornings I get at Spencer's Starbucks when I pick up my oatmeal on my way to work or a doctor's appt; from the fist bumps I get from Kevin, my oncologist's assistant, to a co-worker stopping me in the hallway the other day, telling me she had run one of those "kick cancer's ass" type of race and had thought of me as she sweated through the course... I mean, the support has been amazing.  I have been surrounded with friends, and love, and offers to take me to chemo, and gifts of amazing food, and rides when I'm feeling bad.  My kids and Roger have been absolutely there for me, in ways that defy enumeration or description.  From the daily smoothies that Roger made me for months upon awakening, to the bike rides that I take with Spencer on the days I feel up to it, to the cooking and nutrition tips that I get from Taylor... along with some damn good movie watching at times... they're there.  For me.  The love is indelible and will be tattooed on my heart forever.

So.  It hasn't all been about me being good.  Or consistent.  Or paying attention to my own goals for how I'm going to change who I am and how I go about my life overnight.  It's been a whole avalanche of support and a deep and important sea change, a change that has started with me but that ripples out to touch my whole world and then that bounces back and comes back to touch me.  It's everything. 

What I've done right, when I am able to do it right, is to give myself space and time to listen and actually hear ... pause and actually feel ... breathe and actually relax ... take care of myself and actually be nourished.  It doesn't happen constantly, but it's happening far more than it used to.  I am deeply grateful, in many ways, that I am learning these things.. and in debt to so many people who are here with me on this quest.