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.

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.

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.