Happily Ever After

I'm writing a story. Most of us are, probably. Our hopes and dreams and fears become a future that we envision for ourselves, and even the present that we perceive. When Dave died, my story took a turn. I should step back, I guess, to the role leukemia has played in my story over the past four years.

When I checked myself into the hospital on Labor Day weekend in 2010, I'm not sure what was going through my mind. I think that I had come to the conclusion that it was the best, or even the only, way that I wasn't going to die; I remember feeling fearful before that point but not after. The story that evolved for me was that I was going to sail through the therapy and be well. And for the most part, that's what happened. I never looked back, never felt fear of relapse.

I relapsed, and the story became that I would plod through and come out on the other side. There is no sailing through this process; it's too long, too slow, too variable, too open-ended. Still, the story was always that I would do the work required and rebuild. At my sickest, in the hospital, I felt some of those fears again, but as I recovered they faded. 

I had a story with Dave in it, a story where we met up for a beer and looked back on the craziness in the companionship of shared understanding, shared trauma, shared triumph. Then Dave stepped out of the story, and my confidence disintegrated. I began to tell stories of motherless children and young widowers, stories of liminal moments when I watched my dreams die.  Every effort to organize my paperwork and deal with old filing would make me wonder if I was "getting my affairs in order." I would go into a dressing room and think, "What's the point of buying a new sweater if I might die?" 

The point is that a new sweater is part of a different, better story, that I can tell instead. 

Lying in bed one night, it came to me. I am not preparing to die. I am preparing to give birth. Just as a mother will "nest" in anticipation of a baby, I am setting the stage for a new life. As in the days before a new baby comes, especially the first, there can be anxiety about the risks and uncertainties the future holds, but the overall emotion is positive. I feel joyful at the prospect of integrating the stories this new marrow brings into my own; I'm ready for this experience but also not ready in the way that one is never truly ready for the birth of the first child. It is going to come, and it will follow certain patterns, but the rebirth will also be unique and unpredictable in unknown ways. 

If the current story is too dark and too scary, tell a different one. Choose your own adventure. But not the one where you get eaten by aliens. 

The Dark and the Light

Last Friday afternoon I received some wonderful news: my donor is confirmed and I will receive a transplant in May! Elated as I was to hear and share this wonder of fortune and generosity, there was someone I couldn't tell, and it cast a shadow over my own celebration. My friend Dave, who had received a transplant as part of his treatment for AML last September and has been a source of advice and encouragement for me since my relapse, was in a coma. Saturday he died; his own leukemia had relapsed and the subsequent chemotherapy was too much for his weakened body.

When I checked myself into the hospital three and a half years ago, I made a conscious choice not to think about any aspect of my treatment that was beyond my control, not to study relapse rates or side effects. I didn't join patient forums where people chat about what's going wrong. I could talk to Dave because he wasn't like that; no matter how bad he was feeling he was confident that he would feel better, and I could look to him as someone who was chugging along, ahead of me in the process. Now here I am, despite my better efforts, confronted with the reality of where things can go wrong. It is not that I have ever pretended they can't, but I haven't had to face the dark quite so dramatically.

Trying to will away the truth of suffering only makes it meaner and stronger. I'm working on taking my own advice; lying awake at night concentrating on what is happening right now, knowing that I am breathing, that I am warm and safe, that my family is near. Focusing on not constructing scary fantasies, and on mourning a loss as what it is rather than making it representative of something larger. I won't dishonor Dave's death by making it a source of fear for me; it is a terrible loss and one that demands no deconstruction. 

I am grateful that Dave was a gifted musician who left a wonderful recorded legacy through his band Brown Bird. Even though I'll never be able to give him another hug or send him another text, I can hear his voice and his art.

This smile makes me smile. Travel light, Dave.

Way Down in The Mines

Like the pain of childbirth, forgotten until the next baby, there is a lot in the process of cancer treatment that I had put behind me, only to be rediscovered once I found myself back in thick of it. The biopsies, the PICC lines, the needle sticks.

The bills and lost wages.

After the distress of the diagnosis, I lifted my head up to embrace the gifts in what is to come, and then put my head down to focus on the work of illness and recovery. John dropped everything else to support me, to deal with the emotional and physical needs of two young children and a seriously ill, hospitalized, wife. Then, at some point, the stacks of envelopes started arriving: insurance claim denials and thousands of dollars in medical bills at a time, credit card bills for gas and groceries, rent, and utilities, with nothing on the revenue line because there's been no time to work. 

The marrow transplant will take place in Boston, where I will be in the hospital for at least a month. Following that is a recovery period of about a year during which time I will be severely immune-compromised and not able to leave the house without a mask and gloves. Already this year, John has missed two months of work, and there's plenty more disruption to come.

I remember the hollow, fearful feeling of these envelopes three years ago, and I remember all the help we received in getting through them. I spent the first night talking down the anxiety, reminding myself that we've been here before, that no one is going to let us starve or destroy our credit over this. I trust that we will surf this, and I'm sleeping well again, but I know we are going to need a lot of help to get through this year.

Some friends have set up a fundraising drive for us, for which we am very grateful. I struggled with the idea, but I have to admit that it will make a big difference and I know it is an easy way for others to contribute. We are so thankful for all that we have received, emotionally and physically; all the lovely meals and help with the kids and everything, but if you would like another avenue for helping us, check out 

http://www.gofundme.com/7o3ymw

We'll never be able to sufficiently express our gratitude for all the love and support we have received; our only chance is to pay it forward at every opportunity.  Whether or not you can contribute to this campaign, know that we thank YOU.

Big Fat Now

There is a counselor here at the hospital, and she is pretty good. She is not always right, though.

Last time I was here, I got pretty sick. The sickest I've ever been, probably; genuinely, scarily sick. High fever, pneumonia, nothing responding to drugs, everyone drumming their fingers and waiting for my immune system to turn back on - this is the sort of thing that can go downhill fast in hospitals and everyone knows it. Even I got a little scared at one point, although once I discovered that Tylenol was going to make me feel better and not kill me, and safe in the knowledge that my white count would recover before I succumbed to the pneumonia, I put my energy into managing the actual moment-to-moment misery.

It was a dark time, though, and the counselor came to see me. She told me that when she was in her early twenties she was diagnosed with cancer and given a five percent chance to live. She did, clearly, but she spent long hours contemplating and coming to terms with the likely prospect of death, and I think she was encouraging me to do the same. Something in me felt that this was not the right approach for me at the time, but I had to stew on it for a while.

I went through a period during that stay, just a month ago, when I thought I was supposed to wrestle with all the suffering in the world. That I had to go among it in my mind, like a mental Jesus or Ghandi or Mother Theresa, and embrace it fully and fold it into doves and let it fly away. All the terrible things that could happen to me, or to anyone, I had to be fully prepared to accept completely and peacefully if they happened in five minutes. I had to be ready to lose everything.

Those thoughts weren't getting me anywhere. It felt impossible, and it brought me no peace. As terrifying as it would be to have the doctors tell you at 23 that you were likely to die, slowly and painfully, it isn't the same kind of scary as imagining what happens to the worlds of your young children and your husband if you are wrenched from their arms. No less alarming, but different. It didn't seem like it could possibly be healing for me to go deep into that thought.

It isn't. It came to me that I don't need to go deep into the prospect of suffering. This is not living in the present and it isn't living peacefully. Imagining all of the miseries of the world pouring through my front door isn't going to get me well. I am not Ghandi or Jesus or Mother Theresa, and I don't have to be. What I have to do is be okay with the reality that the suffering that I am experiencing is unpleasant; that's what makes it suffering. I can love that I am growing and learning from it without having to love having cancer. I can enjoy feeling good when I do, and not enjoy feeling bad when I don't. Death comes for us all; there is no reason to invite it to linger in one's mind, and certainly not to invite it over and over again. At least when you actually die it is a one-time thing. Only in your mind can you die over and over again, in every possible way, and experience everyone else's suffering once you do. Going there is not freedom.

So here I am in the Big Fat Now. Not the infinite possibilities, good or bad, that don't actually exist yet. Just me, sitting on a hospital bed, feeling pretty good at the moment and grateful that the doctors have decided I don't need 24 hour fluids and thus can be disconnected from my IV pump most of the time. Feeling grateful for an excellent multi-hour conversation with a friend who generously brought me lunch (although I have learned that if I order regular trays from the kitchen of the few semi-edible items on the menu that everyone feels much more relaxed, so I have a tuna sandwich and an apple here in the event of some future crisis). Feeling grateful that John is on his way with a tray of mini-quiches and more company. Feeling grateful that I have had so much time to read lately, time enough to read a whole novel yesterday. Feeling grateful for the friends that are around to chat by text during the day. Procrastinating doing scales on the banjo, just like home.

When I got home from the hospital after my last stay I was still pretty sick. I think they would have preferred to keep me, but I reached down inside myself and found the resources to put on the necessary show of eating, showering, dressing, and general dinking around that would convince them that I was sufficiently functional to leave. I knew that I had to get home to get any better, had to eat my food and sleep in my bed and see my children. Just three weeks later the staff here can't stop raving about how wonderful I look, and I know that is because I knew what I needed (and because John is feeding me constantly and not letting me forget that the doctors want me eating 2000 calories a day until I gain at least eight more pounds).

But I was sick those first couple nights (partly because I was in withdrawal from the ativan I had been getting at the hospital, easily remedied by getting more ativan but I was a little slow on the uptake), unable to sleep, heart-racing, eating constantly but not tasting anything, just generally miserable. I got to the point where I was saying out loud that I couldn't take it, that it wasn't possible to go on. But even as I said it, I said that it would pass, that some day soon these moments would be memories, that I was going to survive them because I wasn't going to die and that was the only other option.

And it turned out to be true. The Big Fat Moment. There are good ones and bad ones, but I'm always in one so I might as well deal with the one at hand and not worry about the rest of them. They'll make their appearances in time.

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.