Friday, November 28, 2014

It's My Birthday!

It's my birthday. One of them, anyway. The dragon gets one, too, but that's not until July. As is the case every four years, my birthday falls on Thanksgiving, which means I get turkey and cake. A couple years ago I started writing a post on Facebook on my birthday so that anyone wishing to acknowledge the occasion could just click “like” and be spared any awkward effort of trying to think of something clever to write on the “wall” of a person they have most likely not seen in years, don't know very well, or have never actually met in real life. Such is the nature of social media. I'm okay with that.

The custom this time of year is to write about things for which you are grateful. In the first draft of this post I wandered off on a digressive rant about genocide and economics at this point. No one needs that from me, if anyone even needs it at all. If you are interested in reading about British colonial cruelty, genocide, religious fanaticism and the folly of collectivist agricultural policies, Google is there. You don't need that today. You need a novel take on gratitude.

Life threatening illness is one of those things that makes life really simple. All your priorities become very clear. The people you love, the people who build you up, the emotional requirements of survival: these are what move to the foreground. The physical demands of your body and the illness are consuming; without the cushion of your health to absorb assaults, you must put yourself in the middle of the universe and make everything else revolve around you. That you are not in control becomes very clear, but so does what you do have an influence over. You know what you miss, and what you don't, when you can't do very much. The muse is really loud, the path is really clear.

Then a funny thing happens during recovery, or at least during my own. All that stuff that seemed so simple, whether important or inconsequential, starts to feel complicated again. Where there was in focus and out of focus, now there is soft focus, and then everything gets crisp and urgent again. Life returns to...normal. The difference, though, is that it's easy to see that you are choosing. You can see that you are deciding what is or isn't a priority, whether you realize it or not. You have the chance to say “The universe has handed me a moment in which to redefine myself. What matters to me? Who do I want to be, starting right now?” I know that sounds wonderful and amazing, and it is. But it is also traumatic and terrifying. It is a rebirth, yes, but it is also a re-adolescence, with all the struggle and drama of that liminal passage of self-realization.

Today, I turn 38 years old. My relationship with my husband is almost 15. My marriage is nine. My children are eight and four. There is a lot on my horizon. At some point in the next six months, I will be able to resume normal activities with other people (as opposed to, you know, wearing a surgical mask into the bank. That took some explaining). This means that anything I want to do, I can do, at least in theory. In other words, I am out of excuses.

The second big thing that is happening is that the “mom” part of my stay-at-home-mom job description is being redefined by my customer base, who don't need, or want, my undivided attention all day. In fact, these days I often find that, once everyone has had breakfast and the dishes are done, I'm not entirely sure what to do with myself until lunch. The third thing is that we are rapidly outgrowing our little house, at least in terms of space for John's business or any prospect of my developing one, which means that we have to start planning for a major investment some time soon.

How do I manage my present, when the certainty of sixty years of future no longer feels guaranteed? It's not that I expect to die young, indeed I expect the opposite, but the importance of living young comes into greater relief after cancer. I don't want to waste time when I know I feel good, because I know how easy it is to start feeling really, really bad.

What does all this have to do with gratitude? Remember that part about adolescence? There is a big difference, too. Serious illness can teach you that you have to take care of yourself, focus on yourself, make space for yourself. At fourteen, I felt completely alienated from myself, adrift in a foreign culture I could not navigate. At 38, I know that I am responsible for taking care of me, and that the world will come to me if I give it a soft and solid place to land. I have spent most of my adult life honing the ability to hear and interpret the muse. When I act, whether buying a brokedown palace, quitting a soul-destroying job, choosing to stay home with my kids, selling a house, buying a huge boat, or whatever harebrained scheme comes next, I know that I am doing it because it is exactly the right thing for me, right now. I don't seek balance. If something feels worth doing, I'm going to do it like I mean it. Because I do. I'm so grateful that my experience with leukemia and transplant has made it so easy to stand on the ledge and look out over the landscape and say, “Who I want to be starts RIGHT NOW!” You don't need to get sick to do that. I just got lucky.

Monday, October 27, 2014

What's Natural?

I was watching my son play soccer the other day. He is not a natural. Field position, speed, initiative and attack do not come to him intuitively on the field. When he gets to the ball, I can see him thinking through the things he has been told about what to do next. Sometimes it takes me back to my own childhood, to the trauma of not understanding the game and not wanting to be there, on the field, on the spot. There is a big difference, though. He does want to be there. He asks to play. He's chatty and bouncy on the field (to the frustrated looks from some of his fellow players, who would like him to get his head in the game or at least know where the ball is). I have never insisted that he play soccer, or any other sport. I make it his choice, and thus far, he chooses to play. If he chooses to stop I might get my fall Saturday mornings back.

What does it mean to be a natural at something? More importantly, what does it mean to not be a natural, and do it anyway? I play the banjo. I sing. I sing harmony. I love the banjo. I love singing. I am not a natural. While I have gotten much, much better over the years, I have to work really hard at it and I am constantly coming up against limits in my ability.  There are lots of places where I am going to have to work harder than others to improve, and levels I probably won't ever get to.

I didn't start playing music for myself until a few years ago. My life has always been full of music, but in seven years of playing the piano I never quite got it. I guess I wasn't ready, or it was the wrong instrument, or the wrong teachers. No one introduced me to the idea of playing music as a casual social activity, separate from standard notation and scales. When I was a teenager and people I admired played music for fun, I felt like I had already missed my window and was destined to be a consumer forever. I felt left out. As a young adult, I was envious of the people in my life who would sit and play music together, but it still took me years to start to believe that I could participate. Sometimes I wonder where I would be as a player if I had let myself take it up as a teen and be bad at first; what would it have been like to learn to do something for the joy of it, without feeling self-conscious about my competence? I still struggle with that question.

These days, it feels like everyone wants to be a tech entrepreneur. Certainly, if you are a tech entrepreneur you are more successful than everyone else because you were making millions in your twenties. If you lack aptitude and interest in programming, you are a has-been in the "old" economy. Computer technology never spoke to me, though. I am happy enough to use it, but, like a car, when I can't get it to do what I need it to do then I find an expert and put it in their hands. I keep thinking that I want to learn more about computers, I even went so far as to buy a pc instead of a mac so that I could (haha) learn open source operating systems. Alas, mostly I just get frustrated when it acts like a creaky old pc and search the internet in hopes that someone else can solve my problem.

Given that, I am unlikely to found a successful tech startup and finance my way to happiness. I often lapse into thinking that people who start businesses that gain traction in the marketplace are almost passive, or pre-ordained, as if they are struck by divine inspiration and driven by an unerring compass to navigate the vagaries of their chosen field and the market. Naturals.  I don't actually know a single person who has built a business or carved out a career that way, however. When you are passionate about something, or even just genuinely interested in it, that doesn't mean it's going to fall into your lap as soon as you start to work at it. The most natural thing, I suspect, is to make a lot of mistakes and have some successes, and hope that what works is sufficient reward and motivation to keep trying. It's about making your own luck, and knowing that you are doing what you are doing by choice; that you intend to be there. Finding the path and making the path are two parts of the same process: the process of being open to what we really want.

I don't have to be born a natural to find a path, naturally.

Friday, October 24, 2014

Too Many Apples

I ate too many apples. Really, I did. I started to feel bad, the way you do when you eat too many apples, but I kept eating them. The next day, too. I've been dreaming of apples since mid-August, when the first bland Jersey Macs come out, because I knew that I wasn't supposed to eat an apple until October 17, the one hundredth spin of the earth since my re-birthday. So on October 17, I went to the orchard and bought two bags of apples and ate them all the way home.

And here we are in the days of no counting. The dragon is an infant whose life has been counted in hours, in days, and now in months. The dragon sheds some more soft scales. I can eat almost anything I want now; my nascent immune system is functioning and I can be in some situations without a mask. (Not the farmer's market, though, and I got some pretty strange looks doing my shopping on Saturday morning in my mask and gloves. More for me. The crowd gives me plenty of space. I went to pick up Lysander at a birthday party and the birthday boy took one look at me and recoiled in terror.)

Winter is coming. It's kind of cold in here because I haven't gotten the okay to handle firewood yet, and I'm home alone. 100 days has been the goal for so long, it has taken a few days to accept that there's still more to do, still more waiting. And winter is coming. The time when everything closes in on itself a little, when there's a little less motivation to get out of bed, when everything starts a little slower. It's been winter for me for a while. I returned from North Carolina in early January, in the middle of a brutal cold snap, to go to the hospital and begin this journey. For most of a year, I've been a little more closed in on myself, working a little harder on finding the center, moving a little more slowly.

The problem with milestones is that life can become about the goals. The future can take my eyes off the present.  Having a point on the horizon to move towards can make the time pass, but it can't make the time be. What I struggle with most is seeing how I am exactly where I need to be, when where I am feels stuck. What if there is no other place to get to? What if I reach all my milestones and find out it's still just me, here, at the end of it all, and that doesn't feel like enough? What if it is up to me to actually do something about how I feel about my place in the universe?

I guess, while I'm working on that problem, I'll wait for the next milestone.

Wednesday, October 8, 2014

How Not To Get Eaten By Dinosaurs

We wanted to watch Jurassic Park. The kids were up for a dinosaur movie. I got a pirated copy, which was too laggy. Got a different pirated copy, also too laggy. Then I decided I would pay for it, and ordered an Amazon instant copy. After dinner we went to the computer room to watch the movie, and the door was closed. And the doorknob broke. So the door was frozen shut, with no one inside. After several attempts to break in to the room with credit cards, screwdrivers, or brute force, John had to go outside and break in through the window. This required using a paperclip to open the screen and then crawling through the half-open casement. (It also demonstrated the security of our house when the windows are open). Upon successful removal of the doorknob and mechanism from the inside, we were able to get in the discover that the Amazon video buffered constantly and was too frustrating to watch.

At this point a friend suggested that Jesus did not want me to have dinosaurs.

Finally, John went to the video store and got a hard copy. It worked beautifully. The kids loved it. They've been discussing the finer points of Jurassic Park ever since.

There are a couple of lessons here. One, there are a lot of ways to approaching a problem. Two, there are times when most of them fail. Three, if you want to watch a dinosaur movie, you have to keep trying.

I'm not supposed to be worrying about the future. I can dream about it, or I can stay in the present, absolutely, but it will obstruct my healing to create any anxiety about what might be. For the first several weeks out of the hospital, I felt very antsy about how I should spend my time and what might  happen in the years to come. (I learned from my homeopath that steroids interfere with emotions in a way that can trigger these types of feelings, which helped me to let go of them as part of a passing phase in the process. Nonetheless, they felt real and I wondered how to deal with them.) But there still is some kind of future coming, and this recovery is non-linear, and there are as many types of long term outcomes as there are people who undergo transplants.

Sometimes I get frustrated. I feel pretty good, considering what I've been through, but I don't feel really good. I had withdrawal symptoms when I dropped the ativan too fast, so I have to go back on it and taper it and hope that I can normalize my sleep and be free of the drugs. I can't figure out what to eat that makes me feel well and is healing. My doctors are extremely conventional and conservative and not knowledgeable about anything outside of allopathic medicine, so they can't work with me on other approaches to my recovery. I either have to go maverick and do things I am comfortable with but know they disapprove of, or I have to forego doing things that I know will help my body. I have to take medicines that are much worse for me than they realize (not that I wouldn't have to take them anyway, but I think the doctors are a little cavalier about a year of prophylactic pharmaceuticals). I have to deal with extra fatigue and shortness of breath and other unpleasant symptoms and I can't get second opinions outside of the transplant world because it is a packaged deal.

So it's up to me to experiment, because I know that my body is unique and the one-size-fits-all approach of allopathy isn't sufficient for my recovery. But there are a lot of things to try, and some of them won't work, or they won't work all the time, or it's too soon after transplant to feel the way I want to feel all the time. Do I eat wheat, or not? Gluten, or not? Dairy, or not? What do I replace salad and sauerkraut with? How do I compensate for the fact that the doctors want me to take folic acid, which is hard on the body and may be dangerous as a supplement, or prophylactic anti-fungals, which are a neutron bomb to the microflora in the body that are responsible for, well, everything from mental health to skin texture?

There are days when I feel sorry for myself. Times when I wonder if I'll ever feel better than this, or if I'll suffer permanent setbacks as a result of this process. Moments when I don't feel grateful or joyful, just irritated. When I can't keep up with my kids during a soccer game, or even with my husband on a walk, I wonder if this is the rest of my life. It's the only one I've got, though, so I have to keep trying, stay flexible, and hope that sometimes I'll get it right, or at least right now.

Tuesday, September 23, 2014

What I Don't Know

I haven't followed the referendum in Scotland. I don't really know what ISIS is up to. I'm not entirely clear on Question 1. In fact, from a news-of-the-world standpoint, I am utterly uninformed.

It's self-preservation, really, but it is larger than that, too. It is possible to fill every minute of every hour with news media and analysis. It is possible to occupy the entirety of one's time with the angst of the world. Some people enjoy that, but I have discovered that I feel worse about myself and the power of peaceful interaction when I immerse myself in news.

Access to information has gone from nonexistent to tightly controlled to more loosely available to completely saturating. The old saying "If you aren't outraged, you aren't paying attention" says a lot about the level of psychic misery we think we are supposed to experience to be contributing members of society. My experience on the internet, either through Facebook, or twitter, or innumerable comment threads, is that hostility and negative energy are the driving emotions behind much public "debate." Every time I have tried to engage in these environments in a meaningful intellectual way, I have discovered that there is always someone, somewhere, that wants a fight, or a ten second hate, and that person is happy to bring a steamroller into the garden to shout and squish. Yes, it is a good exercise in not internalizing other people's anger and being mindful of one's own emotions, but it is also exhausting.

So I've dropped out. I'm looking for peace in the moments I'm in, in the human interactions where I have an influence, in dreams and visions. I am staying local.

I have been fortunate to undergo an utterly transformative physical experience. Three months ago I was a different person; now my blood is 100% generated by donor cells. The dragon has shed a skin. As I find out who I am all over again, as I process the ordeal I have endured, I have the opportunity to see the world and my role in it anew. A large part of this is being able to recognize the places in my life where there is psychic dysfunction; what makes me feel out of sync? I do not like being angry, I do not like feeling powerless, I do not like playing rhetorical games of one-upsmanship. I do not like having my information flow create a dark haze over the beautiful realities of the life I am living right here.

Last week I went for a hike with a group of kids and parents who are wonderful, loving people. It was a gorgeous day. I have been nervous to take on a day out with the kids, but my aunt came with me, and I came home feeling completely recharged. On Sunday I visited a friend with a one-month old baby, and spent a happy few hours in her kitchen just chatting. Yesterday I trucked the kids around to pre-k and coop and they got to create and experiment and run with friends; they came home so tired and happy.  

This is my world. This is my news. It is a beautiful place, full of optimism and promise. It might not make the headlines, but everywhere I look, I see peace. And when I am full of peace, I can share it. And that can make the world more peaceful. So I'll have to accept what I don't know as a fair trade for what I do.

Wednesday, September 10, 2014

What I Know

I am starting to tune into what is hard about right now. Remember everything I said about not having control? All those lessons I thought I had learned, all those things I thought I understood? I was wrong. I am not there yet. Sometimes I wonder if I ever will be.

During the history of my treatment, I have always been able to come home and heal however I chose. This time, though, I have to endure, and embrace, a year of taking pharmaceutical drugs and not being able to eat some of my favorite foods. In addition, I can't go out and engage with people or take the kids anywhere. This is a whole different level of lack of control.

Not surprisingly, the combination of food, drug, and movement restrictions has left me feeling sad and restless. I am trying so hard to be grateful for the opportunity to learn to let go all over again, for declaring that there is nowhere else I'd rather be, but I have to be honest with myself. I am not loving this right now.

But I know what I love. I love dragonflies. I can watch dragonflies for hours. I love the way they zig zag around the yard. I love the way they appear out of nowhere when the mosquitoes come. I love the way they will land on John's hand while they are eating a bug, and just sit there, crunching. I love the way they look. I love that they are ancient insects.

And I love my daily walks. I love the way the moss grows on the trees along this road. I love the rock formations. I love how the light filters through all the great oaks here, differently at different times of day. I love when Wallace comes with me on his bike, and chats. I love when my leg muscles are sore from pushing myself.

I love having cancer behind me. I love having received this gift of a transplant. I love that I feel so amazingly, surprisingly, well. I love that this is a challenge, and that I can rise to it.

Wednesday, September 3, 2014

Mom the Survivor

In a lot of ways, recovering from a bone marrow transplant while taking prednisone and taking care of young children is a lot like having a nursing infant. I'm constantly ravenously hungry, I'm sleeping poorly, people need my attention regardless of my level of energy or interest, and there appears to be a direct relationship between my energy crash and demands for an intense Nerf battle. Or maybe the kids are having a battle that descends into the type of fighting chaos that results when an eight year old, even a very tolerant one, tries to play with a four year old.

So, really, I am not the first person in the history of the world to feel tired and unable to rest, to have to take prednisone, to have small children, to have blood sugar issues, or anything else. In fact, I'm probably not the only person I know to whom some of this, at least, applies.

Thursdays are my appointments in Boston. John and I call them our dates. My family has been very helpful in watching the kids for the day, and I schedule my appointments so that we miss both rush hours. Last week was a little nerve-wracking because, for the first time ever, the phlebotomist had trouble drawing my blood. She said my veins looked tired. In all the years I have been going through this, I have always been told I have terrific veins and there has never been any problem. It made me realize there is a lot left to this process - who knows if I'll end up having to give blood draws from some other, more painful vein, or get an iv; we aren't just going through the motions. This is an active, evolving thing, and all sorts of different and unexpected challenges are going to come up.

What does that remind me of? Oh, right, being a parent.

So yeah, I'm a little housebound. Where normally I would be diffusing some of this energy with trips to the beach and outings with friends, I'm hiding from the sun and scrambling to arrange activities to keep my kids entertained. But really, this recovery is mostly about logistics, trying to remember what I've been through and the space and safety I have to give myself while knowing that things are going to get better, and knowing that every mom has hard work to do.

What is Mom if not a Survivor? I just get to claim the title in more ways than one.

Friday, August 29, 2014

Hundred Day Holiday

Yesterday was the fiftieth day since my transplant. When I look back on what has transpired since January, I can't quite process it. I'll admit I am not in a place emotionally where I can talk about the cancer at all. It is very hard for me when anyone brings up anything to do with my recent health history, except for the recovery period from the transplant. There will be time to face that past, and I will need to take that time, but right now I need to put all my energy into my strengths.

Sometimes I worry that I will miss the opportunity to become a better person. When I'm full of fears and anxieties, counting the days and the limitations, I feel like I am turning my back on this incredible gift of the reminder that now is what we have, life is what it is, and my outlook is my choice. In this recovery I have even less control than I have ever had before, because I can't pursue my goals using nutrition and not pharmaceuticals. I have to accept these pharmaceutical drugs, and all the rules of the recovery process.

So I will embrace them. If I need to eat every five minutes right now, I'll just keep doing it, and I'll eat the things I am allowed to eat and feel so very grateful that I am not having trouble eating. If I need to ask everyone who comes into the house to wear a face mask, I will do that. If I need to drive to Boston weekly, then bi-weekly, then monthly, so be it.

There are a lot of small milestones in all of this. But one of the big ones is when I hit the hundred day mark. That is when they start tapering off the graft drugs, and this new immune system really becomes mine. Until that time, I have to be extra careful. For fifty more days. So I can revel in the fact that I have fifty days to focus on letting go, on reveling in the love around me, on feeling pretty good considering what I've been through. The doctors say everything looks terrific. Even problems they might expect me to have, I am not having. Even the small spot of graft vs. host disease that I did have is something they consider a good sign, because it means the new immune system is dominating and working.

The time to revel in this gorgeous late summer, letting my body become the dragon, fearing nothing and embracing everything, is now. So this is when I'll do it. On my hundred day vacation.

Thursday, August 21, 2014


The butterfly has flown from the hospital walls. But that's not the whole of the story, I'm learning. Here I am on day 43 post transplant, realizing how much is left to this process.

It's hard to be filling my body with drugs, to have to shun the sun, to not be able to prepare and eat foods the way I am used to; in general, to not be able to care for myself in the way that seems best to me. I am sleeping poorly, which is uncommon for me, and waking up dopey from the drugs I take to try to fall asleep.

But my boys are home, and there are lots of little milestones to shoot for. The weekly trips to Boston should only last a few more weeks before they become monthly. In October I will hit the 100 day mark. And someday this will be a full year behind me, and things will be back to normal.

This period of convalescence is confusing for me. For the most part, I feel really good. And yet, the restrictions get into my head. I feel more limited than I am because I know. I know I have to wait on the cessation of these medications to get my body back. I know I have to wait on the full transition to get my normal back. But in the meantime, my life is mostly mine. I have my books, my boys, my home. I have all my support people. I have everything I need.

I have to embrace this and find myself right here, intentionally. And as the days pass, I am finding it easier to do. This is real life.

Friday, August 8, 2014


When I found out the day of my original discharge that I would have to stay two more weeks, I thought my heart would explode. I was crawling out of my skin. Even as I could see that there was a serious medical situation, I was furious and felt trapped and angry.

The following Monday, I almost discharged myself against medical advice. It was the assurance of the doctors that the cure was working, and that early discharge could, and had, led to mortality, that kept me in.

But I still didn't know how to be here. I didn't know how to make it through these weeks within these four walls. I lashed out. I cried. I begged.

Then I shifted. I found a way to take my own advice. I asked for anti-depressants and mild sedatives. I asked for coloring books. I started to be able to read again. And I decided to choose to be here.

I am grateful that I have been here for the early post-transplant period. I will be going home soon, without needing regular transfusions, without dozens of visits to Boston. I have been safe and well-cared for by incredibly compassionate people who are doing everything in their power to make me comfortable. This is the best place for me to be right now.

A friend told me the other day that she imagined her heart as a bright sunny room with the windows open, and she was sweeping it out. For me, that metaphor is of a room where a butterfly was trapped, batting at the windows, frantic. Then I opened the windows and the butterfly flew out. I can be free here, by choosing to be here.

Friday, August 1, 2014

The Hardest Things

Usually, when things are really dark, I can comb the bottom for that shining gem to wrap in black cloth and then reveal at the end of the post. But right now, in midst of this battle with venal occlusive disorder (this one wasn't in the plans and it takes good three weeks to sort out - got this diagnosis the morning of  my dismissal so I now I am back in this bed in this nightmare of diarrhea and vomiting and pain,) all I've got is the Serenity Prayer. From AA. God grant me the wisdom to accept the things I cannot change, the strength to change the things I can, and the wisdom to know the difference.

If you know where I stand with God, this has to tell you I have reached the bottom. The adsolute nadir of things I cannot change. But there's power in that bottom place, too; I have to stay here as long as I need to and once I am not here anymore, it will be the hardest thing I have yet accomplished.

Monday, July 21, 2014

Soldier's Joy

Moprhine (or, more specifically, Dilaudid). It's a major player. I want to tell you where I am right now, but it's a challenge because the keys move around, I have a finger probe on my left hand and I can't remember the day. Also I talk to people who aren't in the room. And I sleep a lot.

But this is happening. The pain meds help much of the time, and when combined they can often keep the dragon at a simmer. Someone writes the day and date on the wall and I am not visually hallucinating except for disturbing dreams. But the surrealist misery bus moves forward, all this is "normal" for what it's worth. Should be improving markedly by the of this week.

And now, back to staring at the wall.

Tuesday, July 8, 2014

Swallowing a Dragon's Egg

A chimera. A single organism composed of genetically distinct cells. A monstrous fire-breathing mythological creature composed of a lion, a goat and snake. Siblings: Cerberus, Hydra. Something fantastic and implausible.

A little girl, hooked up to tubes, nibbling dry toast and then returning it gracelessly to the emesis bucket. A little girl who is swallowing a dragon's egg.

We condemn the bloody Aztec priest for offering innocents in sacrifice to a slavering god. But what if we are chosen for sacrifice, beyond all earthly volition, and bound to the reeking stone with the promise of salvation?

There will be blood, vomit, tears. It cannot be an easy task, to incubate a dragon's egg. Calciferous substances must dissolve, jagged shards reveal a fledgling beak. Will it accept this new nest? It must be kept calm. The handlers are ready, tense, syringes in hand.

The little girl is calm. She's uncomfortable, but she's calm. These wings will unfurl, like the monarch's on the milkweed, painfully, through the skin, a rendering of the fibrous cocoon. But then they will dry in the sun and the breeze, and be hers. Chimera.

Sunday, June 29, 2014

Ten Things Never To Say To Me

There are a lot of lists on the internet. According to my Facebook feed, there are somewhere between seven and ten things I am doing to screw up my child (if I had a daughter the list would be longer). Seven and ten seem to be magic list numbers, because that is also the range of bullet points outlining things happy people do (that I don't), ways I am undermining my fitness program, things I am saying that offend people who have children with disabilities, have suffered a loss, are dealing with a difficult illness, or some other problem that I don't have and might be scared of and therefore might react inappropriately to.

And there it is, in the last clause of that sentence. When we are going through something that scares other people, other people might not know how to react in a way that will feel empathetic and compassionate. Maybe they don't quite want to empathize, because they never want to be there themselves. Maybe they hold a different worldview and find comfort from a different direction than I do. Maybe everyone is different and what magically lifts the weight for one person is a burden beyond measure for another.

My experience with cancer, and treatment, has been an incredible gift. It has made my life simple emotionally, if complex logistically. It has enriched my understanding of relationships, helped me see where and what home is, brought the present into focus. I am not at all sorry to be going through this. It is who I am; it is my path. If I fight that, or resent it, I might as well just stop living right now. Certainly, I don't want to die, and I'll be damn irritated if I do because of all of this, but I'm not planning on it and don't expect it and I'd be really annoyed if I checked out now just because of a fear of checking out later.

That's my process. It isn't everyone's process, though, and that's just fine. So how can I know what to say to someone else who is going through something that might be hard, might be beautiful, might be both, might be neither? I don't. I can say something completely safe, and that's fine, but maybe I'm not big on small talk or safety. Maybe the safe option doesn't feel like the engaged option, and if I am reaching out to someone who might be hurting I want to act like I mean to be there.

Human interaction is important to me. That I need compassion and empathy doesn't negate my responsibility for offering compassion and empathy, and the first person who needs that from me is the first person who is trying to reach me and goes about it the "wrong" way. Mindful speech is important, and it is worth taking mental notes when people make clear what they don't want from an exchange, but what matters to me is intent. I do not want people to say nothing to me for fear of saying the wrong thing. I can take responsibility for my side of the communication.

So I don't have Ten Things Never To Say To Me. I don't even have one. If you mean well, if you want to connect, if the idea of getting leukemia twice and needing a bone marrow transplant scares you and that is part of what you need to communicate when you talk to me about it, by all means, please do. I can't imagine not finding that scary, if I weren't going through it. I don't want people to be correct around me, I want them to be authentic. (I'm not saying there aren't things that drive me nuts; we all have stuff that triggers a reaction. And I do get frustrated when I feel like I've made my reaction to certain things very clear. But I also recognize that some people don't pick up on those signals, and that's part of the process of compassion that I'm always learning).

Now go figure out the seven to ten things you are already doing right with your health, your relationships, and your life. And say whatever you want to me. I'm pretty tough.

Monday, June 23, 2014

Hey! Stop it! Hey! Ow!

I was in the clinic getting a blood transfusion the other day, and there was a woman in the next chair. I could tell by looking at her that she was miserable. I probably would have known without looking at her, and I certainly knew based on everything in her tone and her words. Some people give off that energy, that the world has dealt them a crappy hand and it isn’t fair and there must be someone to blame. And it seems like the easy thing to do when you are dealing with serious illness, to wallow in self-pity.

It’s not. There is nothing heavier than anger and resentment, and there is enough to carry on this journey as it is.

Prior to getting the transplant, I have to have an echocardiogram (ECG) and a pulmonary function test (PFT). Due to the sporting proclivities of my first donor, I have been through this process twice. During the PFT, both pulmonologists told me that all my levels are normal, except my oxygen diffusion. Guess what causes reduced impaired oxygen diffusion? Chemotherapy! So I get to sit with a specialist who tells me I’m broken in some new, special way that I wasn’t broken before, thanks to the treatment.

I am scheduled to admit to Brigham & Women’s Hospital in less than two weeks. On Tuesday, the doctor called. My ECG showed an abnormality; my heart’s ejection fraction (EF) might be too low to safely go through the conditioning chemotherapy. My ECGs were all normal up to this point. Here’s another quiz: what causes reduced EF besides a heart attack? You guessed it, chemotherapy! So, the cardio-toxic drugs they have already given me have damaged my heart, and there was some question of whether I could keep it together to get the pleasure of receiving more cardio-toxic drugs. Fortunately, further tests have indicated that we are in the clear, if on the low side. With some effort, I should be able to improve the EF over time.

Everyone is really nice about it. But there’s no getting around it; they’re hurting me and they’re doing it on purpose.

A couple weeks ago I went for a routine blood draw, and the nurse did a really clumsy job of it. It finally occurred to her to apologize, but it struck me that all these sticks, the ivs and the piccs and blood draws, are the minor routine procedures which bear no special attention; they’re so far down the list that they qualify as nothing. Another time the tech was bouncing off the floor in a caffeinated frenzy, and although that stick wasn’t quite as painful, it was still not perfect. After the fact she told me she hasn’t been drawing blood lately and, as I can tell, some days she’s better than others. Ha ha. The biopsy is supposed to hurt like hell, so that one gets acknowledged, but it doesn’t have any bearing on how many get ordered.

Now, I’m not saying that anyone wants to hurt me, but that doesn’t change the fact that they do, over and over again, intentionally. We are supposed to avoid people and situations that hurt us. What happens to our relationship with the world, and with ourselves, when we a regularly seeking these people out and giving them permission to do it? What happens when everyone tells us, when we tell ourselves, that it’s for our benefit?

I try not to do things the hard way. That’s not to say that I don’t embrace a worthwhile challenge, but I find that when something feels uncomfortable, and that I have to force myself to do it, it ends up not being the right thing for me to do. I’ve watched too many people (including myself at times) choose to be in interactions or situations that make them miserable because they think it is what they are supposed to do. My general rule is that emotional pain is information like any physical pain; it usually means I’m doing something wrong. Identifying that, admitting it, and fixing it are sometimes huge challenges (especially when it comes to relationships, both personal and professional), but ignoring it or pretending it is possible to ignore it are usually worse ideas.

And yet, here I am, doing all sorts of inconvenient and uncomfortable things. There are two options at this point. One is to recognize that I am choosing to be a part of this process; choosing to endure the injuries and indignities of it in the knowledge that the corporeal alone is subject to the suffering. The other is to resent it, to believe myself to be a victim of indifferent or malevolent forces.

I don’t want to carry all that extra weight.

Thursday, June 12, 2014

That Elusive Path

"Some day, they'll be sorry for what they did to us. But right now, it's all we have," said a friend who lives with an illness that is often debilitating and only partly treatable.

Sometimes we choose to do things that are hard. We choose because it seems like the only real option, or because it feels like the best means to the end, but that doesn't make it any easier.

It seems trendy to discuss cognitive dissonance these days, as a problem that other people have since they can't seem to see the obvious wisdom of the viewpoint I have embraced. Certainly, we get emotionally attached to ideas, especially ones we have worked hard on hashing out, and we don't like to give them up lightly. To my mind, though, all this talk of cognitive dissonance assumes that there is tons of incontrovertible truth out there and it is just a question of lining it all up and drawing the clear conclusions. My experience in life hasn't been that way. It seems to me that sometimes the gods that are sparring are equally powerful.

Cancer is a bit of a battleground in the warring worlds of different medical modalities. There is the allopathic model, which treats the body as a sum of discrete parts where sick bits can be sprayed with gunfire, and everyone can hope there isn't too much collateral damage. Types of ammunition can be compared through random control tests (RCT), where all the potential confounding factors can be accounted for and eliminated. It is a world where one can assemble a cohort of physiologically identical-enough individuals to produce meaningful outcomes. And there must be something to it, because survival rates have improved since the advent of modern allopathic treatments. Survival statistics for acute myeloid leukemia in the 15-34 age bracket has seen an increase of over 30 percentage points in the past 30 years, for example. Still, the treatments are dangerous and difficult. When I think of the people I know who have died after a cancer diagnosis, they have all died from the treatment more than from the disease. Chemo causes cancer, and it kills.

At least we have some statistics, though, for chemotherapy, radiation and surgery. When one attempts to determine the success of other types of cancer treatment, there are no numbers. You can find testimonials, and even clinical reports, of cancers cured by non-allopathic methods, and I believe these stories, but there are no numbers. There is no way to compare the mainstream treatment options with the alternatives.
But allopathic medicine takes no account of the factors it can't measure (and it shouldn't; that would compromise the quality of the type of data medical research produces). Yet we know that emotional experiences, in your own or your ancestors' pasts, can influence gene expression. There's the intriguing if controversial work of Dr. Emoto on whether water molecules respond to emotional energy. Dr. Prasanta Banerji in India is documenting the success of treating life-threatening cancers with homeopathy. Homeopathy, Reiki, aspects of chiropractic, acupuncture, qi-gong, yoga, and other modalities focus on the role that energy flow within the body can affect healing. Then there are the powerful medicinal effects of plant medicines, much of which is derived from ancient indigenous healing traditions: essiac, chaga (betulinic acid is the active component in chaga), cannabis, cucurmin, to name a few. There are individuals for whom religious belief is sufficiently profound that prayer can heal.

Modern medical science is excellent at describing the processes and the biochemical landscape of the body during disease, but it still has no real answers for why diseases like cancer strike some people and not others, or why they recur. I have NO known risk factors for leukemia, and during the time between initial remission and relapse my lifestyle was even healthier, if possible, than before. So why am I sick? Doctors don't know.

On the other hand, while the oncologists can guarantee me unpleasantness and they can't guarantee the success of my treatment, they seem to have the most concrete positive-outcome data available. I am not a slave to the RCT; I recognize that it has major limitations in assessing the validity of energetic modalities, but I do know people whose cancers have been cured by conventional treatment, whereas I don't know anyone who has successfully treated cancer without it. On the other hand, I also know people who have died as a result of chemotherapy and radiation.

When the doctors told me I didn't have a donor anymore, and that they were looking at partial match donors, I decided to assume that this was the right situation for me. If there was no perfect match, I would not do a transplant, and I would pursue another form of therapy instead. Then, when I had started to develop a plan of action for that approach, they called and told me I did have a donor. So was that now the best path for me to follow? I can't afford to be completely passive in this process; I have to be ready for what I'm about to do; fully committed to embracing any suffering that comes with it as part of the best means to the the best outcome.

The truth is, I do believe there is more to medicine than drugs. I do believe that cancer is a symptom of something going wrong with the body, and that there must be better ways to reprogram that error code than the scorched earth of conventional cancer treatment. But I was raised in a western tradition that accepts the statistical outcomes of scientific experimentation as meaningful, that considers germ theory valid (although I also believe that terrain is tremendously important and a still-undervalued component of healing), and that finds no certainty in faith.

The treatment that is most culturally resonant for me, the one that is going to be easiest for me to fall into and turn off the analytical processes in my head (which I don't think are helpful for healing), is going to be one that spans a number of modalities. I need to have a stem cell transplant. I also need to manage my recovery and relapse risk with the powerful agents of homeopathic, herbal and nutritional traditions. Not as a complement, or as a head-patting nod to my psychological process, but as an integral part of why this is going to work for me. Until the doctors know why one person gets sick and another doesn't, they need to open their minds a little more.

I think that oncology would be much more successful if doctors learned more about the needs of the human body; if treatment weren't a finger-crossing reliance on the miracle of the agent to endure but rather a carefully considered understanding of what nutrition is and why it can't be boiled down to a bunch of electrolytes coming through a tube. Doctors need to understand why medications that destroy eating and sex are taking away life, and why that needs some special attention besides an assurance that it's worth it. Of all the people who hurt me, who stick needles in me and prescribe horrible drugs, not one of them has experienced what I am going through, and that's hard; it's a pretty powerless feeling. A doctor that can't recognize that a patient is going to know she needs things during the process that he doesn't understand is not a doctor who is treating a person, it is a doctor who is a treating an entry in his research log.

My problem is that I think too hard; I plan too much. Healthy, for me, is letting go of that control, but I have to do the work and struggle of figuring out what and whom I can trust enough to take over. I know I can do this because I know what MY path is, but it hasn't been an easy path to find.

Wednesday, May 21, 2014

Miss the Ground

John is pacing.

There isn't anything wrong, really, right now. But a cancer diagnosis is like an earthquake; long after the shaking has stopped, you don't feel as if you can trust the ground. If there have been aftershocks, it takes even longer for your confidence to return.

Creative energy is a mysterious thing. While I know that positive developments occur when I feel positive, I also recognize that it cannot be forced. It is not so much that I find my center, again and again, when the earth has shifted from under me. It is more that I sit in the rubble and know that I am not happy about it, and wait in the knowledge that I will fall back to peace.

All we can do is cultivate our core and hope that good things grow, that when the foundations shift we will be dragged back to a good place by the gravitational force of the center.

Douglas Adams wrote that the key to flying is to fall and miss the ground.

But you have to practice, and that means falling and hitting the ground, hard, again and again. And you can't teach anyone else to do it. The only thing you can really do is meet people where they are, with unconditional love and acceptance of their unique processes of growth. You can be a soft place to land when the tremors hit.

And then they miss the ground.

Wednesday, May 14, 2014

Bottom Land

I sat down in the shower and cried. I guess that constitutes a low point. The first donor is injured and unable to donate for at least two months and the second donor is unable to donate at all. We must restart the search process. I feel like I was within sight of the summit, and then a storm blew in and I have to bivouac for an unknown amount of time. To wait, to hunker down. And also, I have to go through another cycle of chemotherapy, enduring a rainbow of discomforts.

It's pretty amazing to feel so completely good, over and over again, after feeling so completely bad. If ever you feel the need to marvel at the incredible resilience of the human body, take note of the people you know who have recovered from chemotherapy. The depth of the abuse perpetrated by these drugs is unfathomable. They are so caustic they will burn your skin; they are so caustic they will burn through the veins. They have to be administered in such a way as to completely bypass all of the body's defenses, so that they can enter the bloodstream and reconfigure the DNA of any cells that get in their way. It's best not to think too hard about what they do now, and what they do later. 

That's one thing when you feel sick; when the doctors have told you that you will die without treatment and that this is the only option. The pricetag is high, but it's worth it. You look at your family, at the stories you've told your whole life, and get out the checkbook.

But when you don't feel sick, when you are in remission and the doctors say you must keep coming in for more, when it isn't even part of the treatment but just a placeholder because of logistics and banal details completely beyond your control, when you start to doubt the wisdom of it but you don't have an argument and you know in your gut that a lot of this is guesswork on everyone's part, when you don't know the timeline and the goal posts keep moving, and it's going to hurt, the choices don't feel as simple anymore. 

The horizon gets broad and bright when things feel good, and the prospect of having everything shrink again is scary. Thinking that my body has lost a critical defense, that my own cells may begin to mutate and try to kill me at any time and the mechanism that fights that mutation is broken and must be chemically destroyed and replaced, is pretty disconcerting. If my marrow is broken, how can I trust my instincts? What can I possibly know in my bones, if they don't work?

When can I say what feels right in this process, and what feels unnecessary?

Right now, I have no way of answering that question. It seems to me that my work is to take the path of least resistance, and save my energy for the tasks I know only I can do. I don't believe that the doctors are infallible, or that they even know exactly what they are doing right now. But I want to put my energy into the things that I want to grow, and I don't want the cancer to grow. I will let the doctors direct that part of the process, and I will grow in my ability to wait, to hunker down, to just be. I will grow in my ability to find peace and wisdom in the uncertainty of things, to find the still water under the raging tide, to accept that gifts reveal themselves in time and not at my command.

I didn't want to do anything when they called. Not move forward, or backward, or be in the moment. I just wanted to be frustrated and angry and stuck. I told John I felt like I couldn't get any purchase on anything, no feeling of momentum or direction. He said it isn't the year for that type of growth. He's right; it's the year for another type of growth altogether, and I have plenty of that left to do. 

So I'm past that low point. I think. I'm ready to learn to wait.

Monday, May 5, 2014

Oh, Right, This DOES Kind of Suck

I guess I'll unpack. For a few days, anyway. As soon as I published my logistics post, put all my tshirts in little baggies and sorted out a week's worth of children's clothes, the phone rang. My nurse at Dana Farber was calling to tell me that my donor was in a sporting accident this weekend and is unable to donate on schedule. (A sporting accident? What did he do? A sporting injury is not the type of thing that should result in extra chemotherapy). 

My doctor is still waiting to find out the nature of the injury and the length of the delay (apparently the donor doesn't come to Boston, but he does have to travel to a donation facility), and whether we need to call the next person in line. I guess that's already been done, actually, so whoever gets there first will be my donor. Unfortunately, processing a donor takes several weeks, so we're set back a minimum of three. Although I won't know for a couple of days, odds are my doctor is going to ask me to go through another round of consolidation chemo, which is less arduous than the conditioning process but still not fun. In that case, it will be closer to six weeks before I go to Boston.

When I write a blog post, I am always honest about how I feel. I wait to write until I have completed a thought, and generally, when I've done that, I have something positive to share. My first reaction to this news was to take it in stride; I've understood all along that one can't keep a calendar during this process, and this certainly does not rank with real bad news in the world of oncology.

But I was ready to go, and now I'm thrown. I don't want to do extra chemo. I don't want to be in a holding pattern again. People tell me how brave I am, how strong, and ask me if there's anything I need and sometimes I feel guilty, as if everyone else is making more of it than it is. As if it isn't that hard.

So thanks, Universe, for reminding me to accept compliments and assistance with grace, for affirming the conflicts inherent in trying to force order on the disorderly, for keeping me nimble and testing my endurance. Because this is that hard. It turns out this whole thing really kind of sucks sometimes. I can roll with that. And now I can go get some grapefruit juice. 

A Sprinkle of Logistics

It occurs to me that I have not taken the time to spell out the details of this process, and folks may be interested. Feel free to post questions in the comments and I will respond.

On Tuesday, May 6, I'll be admitted at Brigham & Women's Hospital in Boston. The first procedure will be the implantation of two Hickman catheters. Two! That means I can be hooked up to as many as eight lines at one time. Oh, the possibilities! One of these will come out when I am discharged, the other I get to keep until the doctor decides I am through having stuff poured directly into my heart. As it is somewhat difficult to place an iv in my arm due to my excess of valves, I am sort of looking forward to this easy-access alternative for my transfusions in the months to come. It's bad enough to go in for regular stabbings, but multiple unproductive stabbings gets to be the limit. 

Wednesday we will start chemotherapy; I get two different drugs over four days, plus a few bonus infusions of various attractively-named substances. A week from Wednesday I will receive the transplant itself; my donor will be at Dana Farber giving the donation that day, I think. He is 37 years old, probably European and possibly German given the donor statistics (and the fact that I had to sign something saying that I was okay with having an European donor and not concerned about risks of fashionable dress or electronic dance music); I can be in touch with him in two years. Although a bone marrow transplant will change the recipient's blood type, in my case we have the same type so I'll continue with my caveman type O+. Then I have to hang around and enjoy the hospitality for a few weeks while we wait for my blood couunts to recover; my white count is usuallly normal about 21 days after the start of chemotherapy but I've never had a chemo this powerful before (although the transplant tends to speed things up so we shall see what we shall see).

The neutropenic ward at B&W is very strict. I can have visitors but they must wear masks and gowns. No take-out, alas, although there are approved outside foods but I'm assuming it must all be hermetically sealed (the mantra is packaged, pasteurized, processed). I cannot have any fresh food; everything must be cooked. I'd probably starve to death on a diet like that but I won't have the chance since they'll be after me with iv "nutrition" if I drop so much as a pound. My clothes have to be brought in in plastic bags and my books have to be new.

After transplant, there is a recovery period of up to a year. The first few months are the most critical; we are looking for any signs of Graft vs. Host Disease (GvHD), which is managed with medication. And Boy Howdy, are we Managing with Medication! My immune system will be totally naive; imagine an infant without the benefit of the birth process or breastfeeding, and then add immuno-suppressive drugs (lesser-known Roman gladiators named Tacrolimus and Sirolimus). The protocol is very strict. No food that has not been prepared in my kitchen. No fresh/raw food. No playing in the dirt, no watering my plants, limited social engagement (and I have to avoid groups of kids), no dishes, no laundry, no mowing, no raking, no house cleaning, no hugs, no restaurants, no concerts, etc. The primary concerns are germs and molds. 

"But you don't have to be in a bubble!" they say. I guess that means I can hang out the window of my car and shout across the street. 

Seriously, though, I can interact with people, and I can socialize in small groups, preferably outside, as long as I wear a mask. John and the kids can still go to parties, even when I can't. We have a fancy new screen porch and people can come over and sit on it and we can taunt the vicious Georgetown mosquitoes. My kids can play with other kids, they just have to wash their hands and change their clothes when they come inside. Dad does the minding if the babies feel poorly.

I'm going to create a master list of what brands and kinds of food we buy and set up a charge account at the local grocers so that people can pick things up for me. Folks are welcome to cook for John and the boys or to bring ingredients for recipes. Any dishes that I have to heat to pathogen-killing temperatures are probably also safe. Anything I don't have an answer about I can ask the staff at Dana Farber.

Despite the intimidating list of don'ts, I anticipate that the recovery will go smoothly and be fairly simple. My doctor in Portland says he has been amazed by how easy the recovery has been for his last several transplant patients, and I am in the best category for risks and positive outcomes. My cytogenetics, which are the dna markers on the marrow blast cells, are totally normal, which means that I have what is called a "deep remission." My leukemic cells had abnormal markers, so this means that the lab was not able to detect any tumor cells in my latest biopsy. This round of chemo will make it extremely difficult for any that are hiding to survive, and the new marrow will bring the pain to any that try to creep out in the future. My health is otherwise excellent; my gut is in pretty good shape considering the abuse and my organs are strong. Really, I anticipate that my biggest challenge will be managing the food rules and interpreting them according to my diet and lifestyle, and the need to repair my gut after treatment.

Also, I can't have grapefruit juice until I am off the immuno-suppressants, because it doesn't get along with the gladiators. That is sad.

Saturday, April 26, 2014

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. 

Tuesday, April 8, 2014

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.

Friday, March 21, 2014

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

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.

Tuesday, March 11, 2014

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.

Tuesday, February 18, 2014

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.

Sunday, February 2, 2014

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.

Tuesday, January 28, 2014

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.