Brand New Pocketknife

I considered titling this post "Chemo Hacks" or "Hospital Hacks" but that felt terribly derivative. On the other hand, everyone knows what it means, so I'll put it here in the body instead.

This post is for anyone who wants tips on self- advocacy in the hospital, especially if you come from a background of holisitic treatment. A lot of this is about letting go of your biases and getting what you need in that environment, but also knowing when you can avoid the intervention cascade and when you can't and you have to ride it out with other techniques.

1. Doctors and Nurses Know Stuff! You might not expect me to advocate them first, but they are deeply concerned about your care and their suggestions have merit. Are you miserable with fever or anxiety and sleeplessness? Maybe you would never take Tylenol or Ativan at home, but they can ease the pain. You are in the hospital; make it as easy on yourself as possible.

2. You should still question everything. My friend Jess told me how she trained herself to ask, during her labors, is it necessary? Is it safe? Why should we do it?

3. You can decline a lot of things. If the intravenous antibiotics and antifungals are making you violently ill, ask to skip a dose. Or argue with the doctor about their necessity. You might lose, but you might win. And sometimes they ARE necessary.

4. You are sick, and the hospital is not home. The rules are different if you have no immune system. You cannot power it out. Tinctures and homeopathics need some vital force from you. When the chemo has brutalized you all to hell, they probably don't have enough to work with. Don't be afraid of the big guns.

5. You brought your crockpot and your fridge and all this food, but the aversions are so bad and the hospital food is such garbage that you are starving and cannot eat. If you can get food from outside that works, great. But sometimes you just can't eat. Ask for anti-nausea meds and forgive yourself.

6. Beware the throwing of stuff at the wall. When they come for the third set of blood cultures because they keep coming back negative and your symptoms haven't changed, you can say no. You aren't a pincushion.

7. Ask the nurses to help. Too weak to get up and brush your teeth? Ask for a basin to be brought to the bedside. They'll get your food. They'll get you a commode. They'll carry you if you need them to. They'll wipe your ass if you need them to. They're nurses.

8. Still hungry, losing a pound a day, getting bloated from malnourishment? Ask for a ppn bag. It won't help your guts, but it will get nutrients and aminos into you. It helps.

9. Nourish your soul. When I start a scary internal dialogue I stop myself and say "why are we telling this story? What other stories can we tell?" I also bring my attention and breath fully to anything that hurts. This can help a lot. Don't run from it, it just gets bigger. My son made a drawing of a worm for me. I used it to remind myself to inch along.

10. Just on fluids? Ask to be unhooked for a while, to sleep, to go to the bathroom, to shower.

11.Tell your visitors when you are tired, what you don't want to talk about. Tell your callers your voice is tired. Tell texters you are too tired to type. They'll understand.

12. Ask for help from friends and family.

13. Ask if you can wear your own clothes and have your own bedding.

14. If you are sensitive to pain, come up with some tricks. I open my throat and make a high, warbly sound if I'm going through something painful.

15. Believe in the treatment. You've chosen this path. Commit. Surrender. Find a way through. Write a beautiful narrative of healing and peace.

16. You WILL heal. All this crap they are doing; you'll recover from it. It will take effort and it won't always be fun, but you are not broken, just bent. The damage is significant, but the body is amazing. Learn about restoring immune and gut health.

17. It's not over when you leave. Take the weeks, the months, the years that follow to live carefully, conscientiously, joyfully. Get WELL.

Wagon Train

The wagon train must have been hard living. Depending on the point of departure, it would take many months or more than a year of challenging travel in peril of disease and certain discomfort, bandits and hostile indigenous populations, hunger or even starvation; I'm sure the list goes on. Out in the great prairies, travel-weary or worse, people must have looked to the sky at the flocks of migrating birds and wished they could fly, maybe even wondered whether there would ever be an easier way.

Perhaps I should ask these guys about it.

I am going to tell you some things about chemo that aren't comfortable to hear. I'm not going to tell you anything about cancer because cancer is not chemo. Now that I'm through the first round, the cancer is supposed to be eradicated although we won't know that until the biopsy. The first time I had cancer, I felt so horrible by the time I got treatment that it was a relief to just lie there in the hospital. This time, not feeling nearly so bad, I've had more time to reflect.

And by reflect I mean, in no particular order: rejoice, relax, rage, cry, moan, fear, whine, embrace grace, fall apart all over again, and a few other variations on the theme. To be honest, even though I knowI'm much less sick than I was the last time, my mind has partitioned off the pain of the experience such that I'm trying to remind myself that this isn't the worst I've ever felt. 'Cause it sure seems like it.

Set aside your usual expectations of my sunny aplombitude for a few paragraphs here.

Chemotherapy is Hell. It feels conceived, truly, by the devil. It kills you slowly, from the inside, while your body helplessly and continuously inflames from its already impaired status in a futile attempt to defend itself from the best allopathic medical science has to offer. You might be done in a week, but you won't be, because the neutropenia of the declining white blood cells causes a fever which the doctors then blast with intravenous antibiotics. These are every bit as miserable as chemo. No one would be subject to a course of chemo this long, but somehow antibiotics are different, I guess. Oh, well, they are just doing their best.

For me, appetite disappears, the mouth turns to dust and chalk, every mouthful causes a rebellion, but hunger doesn't necessarily go. So nights can be sleepless agonies of starvation and even convulsive abdominal pains, but the chemo and the antibiotics have conspired to destroy the digestive tract so there are no enzymes, acids or flora to help break stuff down. Every bite is followed by stunning heartburn. The mouth can fill with painful sores, and the bowel looses toxic diarrhea. Of course, there are drugs for these things, which have terrible side effects for me in terms of rebound symptoms and self-perpetuating discomfort. The topicals also are full of lovely chemical flavorings and aspartame, just to make sure I don't stand a chance.

My body is strong and noble, and it fights against this assault with relentless vigor. I spend long hours trying to talk it down, explaining that the messenger may have had a point to make but his methods were destroying the host, that cancer may be information for my body but my body can't endure it and all I have is a bulldozer for assistance at this point. 

In 1911, Dr. John Beard published his research on the cause of epithelial cancers and developed a successful enzyme protocol. In 1967, Dr. William Kelly published his continuation of Dr. Beard's research. Dr. Nicholas Gonzalez continues in their footsteps today, and the clinical successes continue to mount. Drs. Gerson, Budwig and Burzynski have incredible verifiable testimonials of miracle stories associated with their work, all of which rely on building on the body's strength and giving it tools to repress the cancer itself. When I had cancer the first time, I didn't know enough about these organizations and I didn't feel I had time to find out. I've learned a lot since then, so I felt some relief that at least, should I receive a repeat diagnosis, I would have alternatives.

But I don't. These organizations don't treat my type of cancer, it turns out. I don't even want to know why, really. I have found lots of tantalizing tidbits, natural therapies that seem promising, but no clinics. There are a few scattered, unsubstantiated claims on the internet (which isn't to say that I doubt them, I just am not willing to stake my life on them), and lots of people making pronouncements who have never actually had or treated acute myeloid leukemia successfully. I recognize that research requires risk, but I only have one body to work with, as was pointed out to me. I can't just throw stuff at the wall. I need some kind of argument for why something is going to be effective. I am wide open to the idea that there are powerful healing modalities that work outside conventional paradigms, but I need something to hold onto. I have a husband and two small children. I will go to Hell for them if I have to. And I have to.

As recently as the seventies, more than half a century after Dr. Beard's work, no one knew what to do about leukemia. Acute leukemia was a death sentence. The mechanism behind it doesn't act like the mechanism behind epithelial cancers, so the increase in incidence is an opportunity for smart and insightful doctors outside the scorched earth school to assemble the existing work of far-flung healers and the powerful research tools now available to find a better path. Now, however, although we won't dance with the numbers, the medical docs have got something. My odds are very, very good. I am going to walk away from this cancer-free, and in the years to follow I'll lose the limp as well. The current batch of therapies does cure this cancer, not for five years, but FOREVER, when it works. And it is going to work on me. I have a fabulous physician, who cares deeply about his patients and is genuinely open to customizing treatment as much as is possible within his framework. I am strong enough to go through this. I plan to outlive him, and he expects it, too.

I can fall into this abyss, and float there, and endure its torments because Love carries me. I can feel it coming in, all the time. I am an engine of it. Do not be confused when you call or send a text and I tell you I'm good, and then you read this. I can be well and sick at the same time; good and not-good. I can rejoice that someday this will be history, not just for me, but for anyone who has this diagnosis. "[We] cannot decide [what times we live in]. All we have to decide is what to do with the time that is given us."-JRR Tolkien.

All I've got is a Conestoga Wagon. No passenger jets yet. Still, it will get me to California, and there's gold in the hills.

On Lightning Strikes

"Why don't you wear a seatbelt?" my brother-in-law asked the maniac Ecuadorean taxi driver. "If God wants me, He will take me," was the reply. (I see his point, although God could make the case that the seatbelt is part of His will.)

When I had cancer the first time, I wondered what to point to in my past that might have made me vulnerable to such a disease.  How could I, a person who is so careful about what I eat and how I live, get this type of illness? There must be something I had missed. I guess a traditional foods diet wasn't quite the answer for me. Maybe I needed to follow a paleo diet. That seemed to be the answer; I felt really good, slept well, never got sick. Every time something seemed off, I figured there was something I had done wrong. Feeling well and recovered, I read more about non-invasive therapies for leukemia, and I actively incorporated lots of things into my diet to ensure that I would never get leukemia again.

And then I did. How could I get cancer again? What about the neutral pH, and the daily liver cleansing tonics, and the grain-free, sugar-free, grass-fed, gospel-preaching holy sanctimony God-damned diet and lifestyle? WHAT THE FUCK? Should I go back to whiskey and cigarettes? I didn't have cancer then.

Look at these frickin' cows! Those are happy cows! (They're actually my friend Laura's cows, at Two Coves Farm. Go there and buy stuff).

Or could it be that I'm not in control?

On my drive back from North Carolina, I stopped at a rest area. There were signs with photos of a missing woman on them; she looked about 18. Life's not fair. We make choices, we influence the outcome, but we AREN'T IN CONTROL.

I've been mistaken about what health and wellness are. They are not diet, or supplements, or a specific number of hours of fresh air and exercise. These things matter, but there is a center that will hold or not, and it is in cultivating that center that I can find my recovery. It is in trust, and in forgiveness, and submission to a process that is beyond my control.

But I'll still wear a seatbelt.

The Best Mom In The World

"Tell me about your mother."

In this scene from Bladerunner, Holden is attempting to determine whether Leon is a replicant, or non-human AI being (ten points if you knew that).

Each Mother's Day, I think of this line and the implication that having, or having had, a mother (in whatever incarnation), is the essential quality of humanness.

When Richie Havens howled  "FREEDOM!" from the Woodstock stage, from what song was he was crying out? "Motherless Child."

The characterization of the American nineteen-eighties as a time of spiritual alienation is often illustrated by the supposed catharsis of blaming one's mother from the psychiatrist's couch.

So what is all this crap about "The Best Mom In The World!"? Did I have one? Am I one? According to Facebook and Hallmark, we all did, and are, which is clearly malarkey because "best" is an exclusive, objective designation.

Last year on Mother's Day, my mom said she hoped that, in attempting to live life fully, she had made some contribution toward my own efforts (or words to that effect). Is that true, and does it matter?

The cliche of the "awesome responsibility" of motherhood endures because it resonates. A benefit of the unfathomable demand for resources that a newborn requires is that I was too busy and shocked to reflect long enough to collapse under the weight of this existential burden. The dissonance of cosmic perspective, the everything-ness and nothing-ness of our travels on this coil unfolding to infinity; it is a good thing that I had to spend so many nights of my first months as a mother pacing the freezing floors clutching a wailing child, or I might have spent those midnight hours listening to my ears ring and my heart beat with terror.

As it was, it was startlingly easy. I never felt that terror. There was too much to do, just learning to be.

That is the great crux of it, then. In making me a mother, my first son made me THE mother, to him and to myself. If motherhood is the origin of all things, it must encompass, with the scaling and the soaring and the blue, blue sky, the discordant cataract of misery's river and the calm eddy and pool of life's meanderings. Sometimes I may follow my mother's path, or stray unknowingly, or choose to depart, or cringe at its ravinic plunge as I cling to the rocks above. If I'm aware of the relationship between our paths, it is only in retrospect.

If mindful attention to my own footsteps is wisdom's way, then in such action will I find myself a fully realized mother to my own children.

So Mom, I won't ever find an appropriate Hallmark card, most likely. You aren't The Best Mom In The World. You are THE ONLY Mom in the world. And that has made all the difference.

Immersion Test

Sunny and sixties with a westerly breeze of 10-15 knots at the beach: a perfect day to fly a kite. In some recess of my brain I was aware that, if the kids let go, we were going to watch helplessly as the kite sailed for Portugal. Perhaps that is why, when I heard Wallace shrieking "Help! Help!" in panic, I took off downwind before I saw the spool scuttling down the sand. It reached the water's edge before I did, outpacing me into knee-deep surf, but I dove and caught it as it slowed in the waves. Take that, David Hasselhoff.

Lysander has it under control in this one, although I had to run for it on his watch, too.

Loss of a ten dollar kite is not typically the sort of incentive that finds me fully-dressed in fifty-seven degree water, but I knew how devastated my son would be to watch from the beach as the kite cantered away for the distant horizon. Is he likely to learn the hard way to accept loss? Yep, but I want him to know that I will throw myself between him and that heartache if I can; there will be plenty of times when I can't.

Wallace is almost seven. He had his first real haircut just last fall; he went with his Nana on a salon-and-ice cream date. His thick, curly hair had gotten to a length and tangle that irritated him to the point of overcoming his aversion to change or having anyone touch his hair. Plus, he loves chatting with stylists:).

From this

To this!

 For several years, I've been enduring comments and innuendos from family about the inappropriate length of his hair. It's his hair; as I've said many times, if a man isn't in charge of his own hair, what is he in charge of? Backseat parenting is a popular national pastime, and the hair fixation hasn't concerned me overmuch.

Sometimes, though, it would be addressed to him or in his presence, which hurt his feelings and had the potential to damage relationships. (If someone you loved made regular negative comments about your appearance, mightn't you stop feeling so warmly towards them when you reached a stage of your emotional development where you realized you were not obligated to endure belittling and insults?) He feels confident about himself, but no one likes to be henpecked.

On those occasions, I would come to his defense. Whether he has waist-length dreadlocks or a high-and-tight isn't particularly important to me, but protecting him in his choices and self-expression, especially during this period when his sense of self-awareness is developing rapidly, is. Is he likely to have social crises at some point, doubts about his appearance and concern for how others judge him? Most likely, but I want to do everything in my power to build a foundation for his sense of self-worth that will allow him to transcend pettiness in himself and others, and to own his choices.

I could end this post here, but there is one more child I want to tell you about. She had a normal, middle-class upbringing in the benevolent dictatorship of a loving household, with all the usual "gentle" tools of behavior-modification; rewards and time-outs and the like. Her best interests, as defined by the values of her guardians, were the central concern. I guess that sort of approach is intended to produce "well-adjusted" children.

There are some flaws in this strategy, unfortunately. What if the child is developing her own values and priorities, and they don't match exactly? What if she has an innate skepticism of authority and an intuitive compulsion to push to the boundary, and regularly finds herself in situations where authority, invalid and abused, is based on a lack of meaningful alternatives? What if she is made to participate in the ritual public humiliation and social stratification of competitive sports, which she hates, mocked by teachers and classmates for her curiosity and achievements, trapped in classrooms at the mercy of peers whose capacity for cruelty and torment is the stuff of Hollywood screenwriting (where it is often resolved with extravagant fantasies of revenge)? How much energy is wasted in the constant rebuilding and refining of armor against these incursions, rather than in more fulfilling pursuits?

I was fortunate. I finally sought and attracted a community of people that were relentlessly forgiving as I faced my own capacity for cruelty and insecurity, and as I wrestled with my own authority. I have no regrets; had I not had these experiences, I might not have become as sensitive to the work of compassion and love, of forgiving and needing forgiveness, to the true nature of optimism, to the many guises of force.

I recognize that the gift of consciousness can be baffling and burdensome, and that growing is painful at times, but I don't see any reason to make it extra difficult. The best I can do for my kids is to be honest with myself and with them, and try to make space for them to find places in themselves that I can't anticipate. I can learn to meet them where they are, without judgment, and in so doing learn to meet the world the same way. Sometimes that means jumping in unprepared.

The water didn't really feel that cold; it reminded me of surfing.


If you would like to comment on your own coming-of-age challenges, and how they have shaped your choices as an adult, I would love to hear them!

Sink, Swim or Drain the Pool: Nourishing Failure

"Well, we didn't do, and we didn't quite die,"-Dr. Seuss

Sailors tell stories.  Sudden, violent gales, knockdown swells, equipment failures, groundings, comical bungling; this is the stuff of nautical talk. Who wants to hear about the time you went out and it was really nice?

I'm reminded of a story told to me by a captain about his first watch as mate on a new boat. Each time he went below to report to the captain on what were rapidly deteriorating weather conditions, the captain would reply, "wake me when it gets worse." Finally, with winds gusting to fifty knots (a knot is 1.15 m/h), spars splintering, lines parting, and cargo swept from the decks, the mate went below to wake the captain. "Wake me when it gets better," was the response.

By sailorly standards, then, our first day out was a perfectly uneventful bit of cruising. From a lubber's perspective (or any other sane person), however, it was miserable. Lacking wind to sail, we motored through six-foot swells under gray October skies. Lysander spent the day wailing "I want to go home!" or passed out in my arms, I donated what little I had eaten in the previous twenty-four hours to the marine environment, and Wallace lay on his back in the cockpit with his eyes closed. Toward the end of the day it drizzled. We dropped anchor in the Saco River, in the exact spot where we had moored old Ruby four years earlier.

During the night I assessed the situation. How did it compare to our vision? What were our objectives? Had we already gained useful experience cruising, found our limits and where to focus our growth? Was I at ease, or was I scared? Was it productive, motivating tension, or destructive anxiety?

The next day dawned like an advertisement for New England in the fall; we decided to head for our next scheduled destination and then modify our plans. We motored out into light seas and favorable winds, raised the sails and headed south.

Looks auspicious, right?

The wind immediately began gusting to thirty knots; it was all we could do to strike the sails and motor back in. Over our shoulders we could see the Coast Guard going out while the fishing boats came back and a thirty foot sail boat headed in on a tow line. We motored back up to Portland, managing to scuff the only rock in Casco Bay on the way up. When John called a friend to meet us at the dock, he said, "You didn't try to sail today, did you?"

This was a successful voyage. It was some of the most instructive time we have spent on the water this season, and we have a clear vision of what needs to happen next. I've had a few days to unravel the psychic buildup to this adventure, to marvel again at how life always falls into place, and to enjoy an electrical system with sufficient amperage to power the Vita-Mix and a toilet that flushes easily.

When in over your head, you can sink or swim. But sometimes it's wisest to drain the pool.

Sailing is fun when you don't feel like death

Fear Factor

You know the first part of the story: I was young and strong and I got cancer and it is one of the best things that ever happened to me.

You might not know the next part, and the reason it has been silent on the blog for so long: Right after I was confirmed as being in full remission, we bought a thirty-seven foot sailboat.

She's exactly the boat we dreamed about as we sat in the sun on Saturday mornings and spilled coffee on the map of where we now live. We've been quietly preparing her to carry us from Maine to North Carolina to live aboard for the winter. What comes next is uncertain, but it is unlikely to be conventional. (Since I couldn't talk about it publicly, and I can't be insincere about what is important in my life, I couldn't write for a while).

I'm excited. I'm ecstatic. And I'm definitely scared.

I used to think I could rationalize my fears away; I would confront my anxiety with a host of reasons for its cosmic insignificance. Then it would continue to sit and smirk in a corner of my mind, enlarged and empowered by my efforts to banish it. Then one day I sat down across from my own mortality, and I looked at my hand, and I had nothing to bid. I was scared. I was really fucking scared. I was so scared that I had to admit it, admit that I was afraid to die and without any argument for why I wasn't going to.

Then a strange thing happened: the anxiety went away, and my course of action was clear. The unknown was still there, the source of the fear, but the fear itself had no power. I didn't feel afraid anymore.

Sometimes I leave the kitchen a mess all day. I know that it has to get cleaned, and so it will. But that letter might not get written, or that call not get made, or that game not get played. I'm going to wake up in the morning and take breaths, one after another, all day, no matter what happens. Sometimes I'm going to be scared, and that's just one of many things that might happen. Security is illusory. So I'm getting on that boat, and charging into the unknown, because the fear wins only when I pretend it's not there. In adventure, the payoff is proportional to the risks.

Of course, I'll have to eat. Two of my favorite recipes are adapted very closely from these links, both grain- and nut-free: Fluffy Coconut Blueberry Pancakes, (I substitute maple syrup for honey and add a cup of blueberries. If you increase this recipe, increase the eggs by a factor of at least 1.5x, so in doubling it you will need ten eggs, rather than eight) and Sweet Potato Fish Chowder (I omit the bacon because my husband doesn't eat pork, and instead of using broth I add a T of tomato paste to the water. I only find it necessary to use a cup, rather than a pint, of cream).