I’m ensconced in the hospital. I’m going to try not to type too much tonight, because my wrist hurts where my IV line is. (They couldn’t fit me in for a central line tonight; I’ll get that first thing tomorrow.)
The nurse came in, started my IV, and we got talking. We probably talked for twenty minutes. She is an oncology nurse (not all of them on my floor are), has been for seven years. She’s young, and startlingly competent. Right now, she’s looking up my paper chart and printing information about the neuropathy drug they’re discharging me with. (I have the beginnings of peripheral neuropathy, in both hands and feet. It’s scaring hell out of me.)
We talked about my care team here, in Sac, in Oakland. We talked about my support system. I told her some of the things I wrestle with—see how healthy I am, how can I be sick? She told me she thought I’d do well.
I asked her why. She said, “Because you’re so positive. When the mind gives up, the body follows.” I didn’t tell her how much I hate this.
I told her about the wind talking to me at the Ranch. I also told her I want to be alive. We talked on the level of, how does cancer change you? If you live, who are you? How does this make you be?
She got it. And I think now I get it more, too.
They upped my Ativan, another grace. It’s starting to take effect. I’m going to go to sleep now. Goodnight.
Thursday, July 22, 2010
I’m ensconced in the hospital. I’m going to try not to type too much tonight, because my wrist hurts where my IV line is. (They couldn’t fit me in for a central line tonight; I’ll get that first thing tomorrow.)
Wednesday, July 21, 2010
My friend S is with me this trip. He’s retired and doesn’t have to save up vacation time to be with me, so we flew down here in the middle of the day. We had time to have dinner with two of my friends from St. George’s. R and D had us over to D’s house, and they fed us with food and love.
We sat on the back porch, eating shrimp and tomatoes (with garlic and capers, yum), grilled chicken and zucchini, and salad. Dessert was grilled peaches and apricots, and homemade ice cream. We watched the finches in the yard, and we all just talked. We were outside. I wasn’t in a hospital gown; wasn’t tethered to an IV pole. I look and act as healthy as anyone’s ever seen me. I didn’t feel like a cancer patient. We all got to be together as human beings. We talked about church, what calls each of us, what we all do in the rest of our lives, retreats. Everything. We acted like old friends. We just got to be.
Two of their church friends brought us muffins for breakfast. They couldn’t stay for dinner, but they said they’d come visit me.
I called A and put her on speaker phone. I had to bring her to the party!
Cancer is hideous. But I get to meet the most amazing people. They know how rough this is on me—knew it before they met me—and their response is food and love.
They sent us home to the motel with leftovers, and a blanket for when I get cold. I feel ready for tomorrow.
They get it. This is how to do community. This is the reign of God.
Finally, I’m able to cry. I don’t mean hysterical crying on the chemo ward. I mean, feeling my anxiety, fear (yes that too) and grief with my feet on the ground.
I’m in the Sacramento airport right now, en route to my second round of chemo. I know exactly what to expect. Last night, I finally let it go. I’d been stressing, triggered by something A does that she doesn’t mean the way I hear it. I finally figured it out, and I told her. I started crying, and she held me. She cried too. It was good for both of us, to finally get it out.
This is happening in my body. I have no answers for why my medical team does anything; I just have to trust them. I don’t control any of this—I can say stop, and have when I was miserable and hysterical. I don’t dare say that when I mean it. I don't want that taken truly seriously. I want too much to live.
I woke up this morning with a line from Pat Humphries’ “Walls and Windows” running in my head. I reached for my mp3 player, and listened to it again. And cried again. Here’s the line that got me:
“Did you sing your children lullabies, to calm their fears at night?”
I say I’m not afraid. Usually I mean it. I’m not consciously lying. I’m truly not afraid of death, though I don’t want it right now. I’m not existentially afraid of sickness or suffering. But this loss of control really gets me.
And the intermittent life. I feel well right now. I won’t Friday, and for at least the next two weeks. I will literally be sick half the time. And when I’m well, I can’t imagine that I am as sick as I am. No way do I have a potentially fatal illness. Look how alive I am. See what I can do.
Then I go back to Riverside, and back to the beginning. Back to doctors and drugs and bad reactions and side effects. Back to nurses waking me every two hours for a vitals check. Back to coming home completely washed out for a week. Back to the incontrovertible knowledge that yes, this is real. And I don’t know what the ending will be.
My body is either responding as we speak, or it isn’t. I won’t know that for weeks. The next time I come down will either be for more of the same, or an even tougher regimen. I have no way of knowing. And no way of controlling. All I can say is go or stop. I won’t stop this (before my doctors do) unless it becomes truly physically intolerable.
It’s the intermittentness of sickness and health, and the knowledge that I may or may not ever truly get better. My well times could be as good as they are right now, or less and less and less. We don’t know.
I want my life back. And I don’t know enough yet about when I’m well and when I’m sick, to snatch it. I just want this to be over. And I want to be healthy.
When I was diagnosed two years ago, survivors came out of the woodwork to support me. Now I know what they lived through. I am learning what they knew. I know why they were so strong, for someone just entering this struggle. I appreciate them even more, for choosing to be there for me.
I hate this. But I'm glad I finally feel it. I'm not sheltering myself anymore. I say I want to be whole. Grief and fear are part of wholeness. The only way I can do this is with my eyes and heart open.
I need to post this quickly; we’re boarding soon. Keep me in your prayers, everyone.
Tuesday, July 20, 2010
I’ve got laundry going in the background. I need to pack for Riverside, when it’s done. I need to apply for Medi-Cal, and ask some friends if they wouldn’t mind checking in on me for the first couple days I’m home. Another friend is picking me up tomorrow morning, and we’re flying down for the next round of chemo. Before that starts, we’re having dinner with my new friends from St. George’s.
- Listening to music I love
- Forming words into sentences, paragraphs, truth
- Bouncing around the house with unwilling cats
- The feel of wind brushing my body
- Grass underneath bare feet
- Lying on the earth, as much full contact as possible with the ground
- Being held in the arms of friends, soaking healing love into my skin
- The smell of warm earth
- Legs that walk where I want them to
- Bengal Spice tea on foggy mornings
- Praying Compline in the dark
- “The Body of our Lord Jesus Christ, keep you in everlasting life.”
- Being back in church, held in loving community
- Knowing that I can preach again whenever I ask to
- Knowing that I can walk back into Safe Ground and belong there, whenever I’m ready
- Breathing in and out
- Singing loud on long car trips
- Playing my guitar for the first time in forever, remembering how
- Hugging trees
- Real conversations that don’t have to do with my health
- Recognizing, and rejoicing in, how alive I am right now
Sunday, July 18, 2010
Sean asked me if I'd been to the Cristo. I said not this week; I'm not in a crucifixion mood. He told me that the oak tree had split into three pieces. He mused in his way, whether that meant something.
It damn sure does. Here is your earthquake. This is your temple veil.
Take that, death!
Friday, July 16, 2010
I went for a slow hike this morning. It wasn’t hot yet, unlike yesterday. I needed and wanted to be outside. But my legs, depleted already, were dragging. I would take a handful of steps and stop. I would just stand, or sit, and be, for no idea how long. And then walk a bit again. It was accidentally meditative.
I noticed the wind. I made my way down the hill as the fog burned off. There were lots of little breezes. Every so often, I felt a gentle coolness on my skin. The wind would brush me, and brush past me. I would smell the earth, and the sweet dry grass.
Every time I felt it, I thought, “This will carry you. The wind will carry your memory.”
I’m not romancing death. I’m not yet dying. I have a very serious, most often fatal illness, which is moving at an unpredictable speed. I feel sick from the treatment, but not yet from the cancer. I am very much alive, and I would rather stay here.
Still, that is how the wind struck me. And it was completely okay.
Thursday, July 15, 2010
I spent most of the day reading old writings. I was looking for perspective, and strength, and I found them. As I was trying to go to bed just now, I came across an e-mail I’d written to my advisor over a year ago. As I was graduating, I wrote her this:
“I’m called to be a safe person in dangerous places.”
It was the second time in the day that I’d come across that sentence. When I first spoke it, I didn’t know if I was talking about the fields or the street. I hadn’t even thought of the river. I just knew I was sent to the edges.
It’s more than a notion. It still fits, completely right.
I can’t put my energy into homeless ministry right now. I’m a cancer patient. I need to focus on my health. As it is, I will be sick off and on for the foreseeable future. I don’t know if I will get better. I can work with Safe Ground when I'm emotionally and physically up to it, but I first need to take care of myself.
But I’ve known for two years that I have a ministry as someone living with cancer. I wonder... Can I take this presence into the hospital? Can I be that, even there? It’s too much to ask of myself, I know. I’ll be a sobbing, vomiting, miserable mess, when the side effects get to me.
But I wonder. If I can go into that place, with that intention, what can I do? What can God do, if I can be that open? And that calm?
Wednesday, July 14, 2010
I was feeling so crappy in the hospital, I never got around to posting this.
We did an MRI in Riverside to rule out brain mets. It did. There are no detectable aliens growing in my brain.
I’m so relieved. One thing that works, you know? And it’s the thing that I count on most. I can communicate, think, feel, and perceive the way I always have. I won’t start having seizures or losing my balance anytime soon. We can put “brain bleed” on the list of things I’m less likely to die of.
I believe, loudly, that God doesn’t give or take diseases. I have cancer because the evolutionary process governing my melanocytes went wonky. God is with me in it; God emphatically did not give it to me. It’s not some ridiculous “trial” that I have to prove myself through.
At the same time, I can say, “I don’t have brain mets (thank you Jesus)!” I stop making sense, out here.
There’s some intelligent commentary on theodicy in that, but I don’t think I’m the one to make it. I will say that if you’re praying for a cure for me, you have my total sympathy. I can’t do it—but I’m glad that people are, even if I don’t think God works that way.
I got invited to help rescue baby oak trees. Think I'll go get dirty for awhile.
People have been telling me for two years that I’m brave. Brave for looking cancer in the eye. Brave for injecting myself with interferon. Brave for choosing chemo. Brave for talking about this, at all.
I usually say, “You would do it if you had to.” They always look at me doubtfully. And I’m learning what an individual choice committing to chemo is. I heard it enough when I said no in the hospital: both, “Don’t give up,” and “It would be valid if you do.” My solution is to commit to one round at a time. Two if I can handle it: that’s the space between PET scans. If I’m going to put myself through this, it only makes sense to find out if it’s working.
What then, can I say that you would do? You would make the choices that are truest to yourself, when your life is in danger. Believe it. Trust yourself. Because I am no more special than my life has made me.
I just wrote yet another thank-you letter to one of my teachers. She’s no doubt used to it now; I do it every few months. She is very, very present in this whole cancer trip. She was there when I first was diagnosed, when I was still her student.
A year before that, I was in another of her classes. And I wasn’t doing my work. She called me in to talk to me about it. I was scared. I was scared of pretty much everything, back then. I remember two things that she said: she wanted me to learn to be tough, and I was too capable to not be getting my work done.
How I got to be the age I was before either I was told or it sunk in that I was valuable, I have no idea. What I think she was really doing—and I’ve finally gotten this, three years later—is teaching me to frame experience in a way that I choose. I knew how to be a victim. I did not know how to own my own life.
I recognized the teaching as important, even though I didn’t understand it. I worked it. She helped me, when I went back to her (frequently) with either a thank-you or a question. We got through, and I got through the experience.
Then I was diagnosed. And cancer taught me more about courage than my teacher ever intended to. She was with me through everything she could be. She is, now. That’s how I know that her teaching is true.
I learned very quickly to look cancer in the eye. I will tell you easily that I hate having it now. I’ll tell you in the same breath, cancer healed me. There is no question. I was so afraid of everything, before cancer taught me not to be. Fighting for my life the first time—even though I describe it now as “practiced denial”—gave me what I need to be where I am right now, on an equal footing with every other human being, afraid of no more than anyone else is, and in the places where it counts, a good deal less.
Example: I’m meeting with my bishop next month. I did the calendar math accurately, and I’ll be sufficiently past chemo to be able to sit up and speak coherently. (I’m nauseous a week out, but I can think past it. I’ll be two weeks out, then.) I also have every right to be nervous. And there is no fear in me. I will say to him, something very much like this: “I know. I know how sick I am, and I know that we have no idea if I have time to go through this process the normal way. I know that there are other things I could be doing with the time I do have. But this is what I want. I have no idea why your blessing matters to me. But it does.”
He’ll probably say, well, God go with you. If he tells me to wait until I’m well, I’ll tell him why that’s unrealistic. That’s the only hesitation I can imagine him having. He’ll give me qualified and considered permission to enter the process, and we’ll go from there. I’ll do as much as I can, being sick literally half the time—and that’s if the chemo works.
I have no guarantees. What I have in bright, big letters is NOW. And the fearlessness that I need to live here.
Yes, I can thank cancer for that. And I do. I have had the teachers I have needed, human and biochemical. I don’t believe that God gives disease. I know that I have what I need to go through it. I have a loving, supportive community, and I have a strong enough self. And I can say this from here, knowing full well that I haven’t suffered as much as I will: if this kills me or if I live, I will be whole.
Monday, July 12, 2010
I’m going to the Bishop's Ranch tomorrow, staying until Sunday. I could probably extend that a bit if I want to, but have to fly back to Riverside on 7/21 to be admitted again 7/22.
The Ranch is the most healing place on the planet for me—not just the trees and the trails, but the people. It has been since I worked there, three summers ago. I feel the effects even before I go there. And I’ve been thinking about where I’ve been, and what chemo does to mind and body and being.
If I am to physically live, this has to work. It has a 30% chance of having any effect, from arresting to reversing the disease. If it works, most people get about six cycles, one week on and three weeks off. That’s six months of feeling unprintable, almost recovering, and feeling awful again. Plus probably about another six months I’ll need to recover from the onslaught of doing this to myself.
If biochemotherapy does not work, we go to high-dose interleukin-2. That can eradicate the disease completely—but will do so in 6-8% of people. It’s even harsher to be on, than the treatment I’m starting with.
If those don’t work, we go to clinical trials. The goal would be to further research for the benefit of people coming after me.
In either of the first two cases, I’ll have PET scans after every two admissions, to monitor if and how well the treatment is working. They won’t leave me to be sick in a vacuum. There will always be a point to it, or at least a goal that we can hope for.
Of course I want to live. But I scared a lot of people when I said from the hospital that I was just freaking done with this. That being sick without relief until you die is no way to live. That I just didn’t see any clear way to keep at it.
Fortunately, it’s like what I hear of childbirth. I don’t remember exactly how awful I felt. I remember not being able to stop crying, when the side effects of interferon (one of five drugs/chemicals I’m given) felt exactly as they had two years ago, and it hadn’t helped then. I am absolutely sure that I’ll feel that way again, and I can tell you what day it will start. I don’t know if I’ll handle it any more competently than I already did.
But I do know that I want to live. I know what the cost of choosing to live begins with, and can end with. And I know I can take this, one hospital admission at a time.
I’ve been home for five days, and am only slightly nauseous now. My arms and legs itch, the skin on my face is peeling, and my hair feels like it’s starting to go brittle. And I know I have the coming week to hike to my holy places, to try to catch the silent Benedictines in a giggle, and to spend time with people I really love.
It’s a choice I’ll have to make every day, in the moment, with and without chemicals flowing through a central line into my jugular vein. Right now, I know that tomorrow is worth it. And if I can have the same kind of Tuesday six months or a year from now, that will be worth it as well.
Putting it this way: I missed the Epiphany bonfire this past year. (I was probably helping host homeless people at my church, which is the other thing I’d rather be doing.) I want to go next year. The only way I can make it, is if I give these chemicals a chance.
My birthday is closer; it’s only in September. But the chances are high that I’ll be in the hospital, so I can’t make myself look forward to it. Distant things, past the likelihood I’ll be in treatment, I can look to.
I can do this while I’m mostly free of sickness. I’ll have to talk myself up to it again, week after next. The only way I can do this is, one admission at a time.
Saturday, July 03, 2010
We have been absolutely, positively, amazingly surrounded by angels.
The living, breathing human kind.
Even the bedbug on my neck the first morning (this is Andee writing) counts as an angel, because it got us—rapidly—out of a barely tolerable hotel into one which...well, more about that story later.
When K. found out that she was being sent to Riverside for treatment, 400 miles away from home, and especially when she was told that she would not be allowed to use her cell phone in the hospital, nor have internet access, she sent out a rapid SOS email. Some of you may have gotten it. Essentially it said, here’s what’s happening, I’m going to be isolated from my entire support community, if you are in or near Riverside, please come visit me in the hospital.
Among others, the email was sent to a sort of unofficial listserv for CDSP (seminary) alums. Where someone whom K. can’t even remember ever talking to (she was finishing her MA as Kirstin was entering the school) read it—and promptly forwarded it to friends at her former parish in Riverside.
Within minutes we were getting emails offering us transportation to and from airport, dinner on arrival, hospital visits, communion whenever we felt in need of its comfort and strength, assurance from someone who had been in Kaiser Riverside a few months earlier that K. would indeed be able to use her cell phone, offer of loan of the rector’s Sprint aircard so K. could access the internet from within the hospital. Love. Pure, unadulterated, unconditional love.
The team from St. George’s Episcopal showed up at the hospital the night of Kirstin’s admission with a huge gift basket of edible goodies. They then disappeared for a few minutes – and came back with a huge icechest and various containers, and proceeded to produce an entire feast. Fajitas, roasted potatoes, roasted red bell peppers, hot and fresh off the barbeque, with all the fixings. Phyllo dough pastries, with cheesecake, lemon curd, and two kinds of chocolate mousse. Not to mention the option of fresh blueberries. Home-baked cookies for the medical staff. Offers of anything and everything we could need. The staff couldn’t believe we’d never met these people before, because we were all having such a good time!
We asked if K. might borrow a warmer blanket—three appeared the next day. They washed our clothes to make sure none of the aforesaid bedbug’s cousins come home with us. They’ve supplied paper towels and tupperware and other essentials so I could set up a semblence of housekeeping from my hotel room. We’ve been offered a house to stay in for any other visits this summer. They’ve visited every day, as comfortably as if we’d been friends all our lives.
Love. Pure, unadulterated, unconditional love.
It puts any hospital visits I’ve ever made to shame, and teaches me more about radical hospitality than I ever dreamed.
Before Kirstin’s first procedure (putting in a central line Thurs. evening), the rector came and annointed her.
Today two other seminary friends (both now priests) came to the hospital, and we celebrated eucharist together. Love, laughter, faith, hope. “I am the true bread. Those who eat of me will never die.” It has a new meaning, this resurrection text, when proclaimed in the hospital, in the presence of someone who may be terminably ill, and yet is today so very much alive.
Love. Pure, unadulterated, unconditional love.
Christ’s love, holding us in the scary places, filling us. Believing us.
Then early this evening, I came back to the hotel briefly. Dropped in at the office to thank them for repairing something I had reported. The resident manager – he relocated here less than three weeks ago, asked how K. was doing. Really asked, not just a formality.
“We serve breakfast here every morning, free, good stuff, take anything you want and bring it to her in the hospital. The day you’re due to check out, if you need to stay later in the day, don’t worry, there won’t be any charge. This isn’t about money, this is about taking care of people. That’s what matters. When you come back down here, it doesn’t matter if you’re not staying in this hotel, here’s my card, my name, my phone number—if you need anything, just call me or my wife.”
Angels, as I said.
Lots and lots of angels.
Whatever happens, we have been surrounded with love.
Christ is with us; we have been fed.
Friday, July 02, 2010
So. much. better.
It’s quarter to three in the morning, and I’m awake. I think my Ativan has worn off. The central line doesn’t hurt as much as it did when I went to bed. I’m feeling so much more peaceful. And I feel like it’s going to be okay.
If I can find a tactful way to do it, I’m going to offer to re-write the packet Robin sent me. It’s written as if being here at all is contingent on one treatment working in the first two tries. That isn’t so.
We had a three-hour consultation yesterday. First one of the nurses, then Dr. Gailani, then the pharmacist and then the social worker. Dr. Gailani gave us better odds—still not great, but better. And explained to us how it really works: they’re starting me on biochemotherapy (interleukin, interferon, three chemo drugs that I remember). I’ll do that now and after the second week home, I’ll do it again. Three weeks after that, I’ll have a PET to see if my body is responding. If it is, we keep at it, every fourth week. If not, we go to high-dose IL-2. I’ll try that twice (same schedule). If that works, we keep at it. If that doesn’t work either, we start me on trials.
The odds aren’t great for anything—but they’re better than the information we had. And there is always something else in the toolbox.
Dr. G was great. He asked what I know about metastatic melanoma. I said, I’m sure you could tell me something I don’t know. He was sure he could (the man is famous in this field), but started at the beginning, and gave me whatever information I could assimilate. He told me where the disease is in me: lungs, lymph nodes between the lungs, muscle in that area (which likely explains the chest pains I’ve been having; they don’t feel cardiac). Bones, and subcutaneous tissue. We’re going to do an MRI to rule out brain mets—but I don’t have any symptoms of those.
He said if we could put me in full remission, great—if we keep me as asymptomatic as possible, that’s success too. Median survival rates don’t relate to individuals. We don’t know where I’ll be, until we pull out the toolbox and see what works on me.
We’re looking at anywhere between 6 months and a year and a half of treatment. Which means, there are options until there won’t be anymore. He will tell us when and if it’s time to stop and let me live fully whatever time I still have.
I’m getting tired and want more rest. I’ll write later about the amazing people of St. George’s.
Thursday, July 01, 2010
It’s not that I’m nervous—it’s that my nerves have been shot for the past month. I am SO ready to get this over with.
What really did me in: I was going through the packet that Kaiser sent me yesterday, looking for the packing list to make sure I didn’t forget anything. I came across the treatment protocol, and I read it again.
I had thought I’d be one week on, two weeks off, one week on, three weeks off, and one week on again before my PET scan. No. I’ll have the PET after those three weeks, and readmission is contingent on the results. (I must have misunderstood her over the phone.)
It feels like my body now has two chances to get it right—not three. I know that isn’t rational. We can tell them I feel like I’ve been sprouting tumors like weeds, and my last PET was... just about three weeks ago. (Dang. Feels like forever.) They’ll have their ways of measuring. This will be enough to tell them whether or not my body responds. Or it won’t, and they can take my new weed garden into account. These people understand this stuff better than I do.
It isn’t a performance test. I can’t pressure my body into complying—and I wouldn’t want to treat my body that way, anyway. It’s just that I didn’t realize until I came across that paper, how desperately I want this to work.
I can tell you that I have no idea how I’d emotionally reconcile being given my life back. How do you re-enter the world, after this? But I know that I could, given the support I already have, and time. And I damn well want to.
I can want it more than I’ve ever wanted anything—and I can’t control whether it happens. I can’t dictate my body’s response. Either this treatment will work, or it will work partially, or it won’t work at all. It isn’t my body’s fault, if it doesn’t.
I need to step back, relax as much as I can, and love my body through this. And I want to. I’m not angry with it anymore. My body has been besieged, I know that, and I’m about to besiege it more by making it sick in the name of reovering health. My poor cells won’t know what hit them. And it isn’t their fault.
I’ve never been plagued by a health problem that impeded me, before I first met cancer two years ago. I have a little bit of asthma, but it mostly acts up if I’m sick or have been around smoke. I know how to take care of it. (I was fine three days after last Easter Vigil.) I don’t think about my body, when I’m well. I’ve never been in the least bit athletic—but my body has always been able to do what I’ve asked it to do. There is nowhere I can’t go, on my own two legs.
IL-2 is really the best thing out there for melanoma at the stage I have it, when it works. It works very well, for rare and lucky people. So either this will work, and I’ll go back to the life I had, or it won’t—and I’ll never be really well again.
I feel well now, except for odd pains that are mostly ignorable, and are either cancer or stress most likely. I don’t want to get sick. I don’t want to hurt more, in more places. I don’t want to watch myself lose my physical and mental abilities. I don’t want to die.
These are all very likely possibilities. And I can’t wrap my head around them. I am so alive now—I can’t imagine dying. Even when I was sick for a year on interferon (longer, counting recovery time), there was a me that wanted to get out from inside the shell of headaches and bone-weary fatigue. I was sick, exhausted, miserable—and I was alive. I could walk around the Tenderloin at 1 a.m., hanging out in drag bars with my field ed supervisor. I could enjoy the activities I was involved in. I could laugh with my friends.
Until the past two years, I had always felt well. I don’t want to never be well again. If this doesn’t work, there are other drugs that may shrink tumors—but that don’t increase life expectancy. (I have no idea how that works.) There is nothing else that eradicates the disease. If this doesn’t work, the next step will be a clinical trial. Results of that would benefit people coming after me. That’s well and good; I have no problem with doing something for the good of others. But I am just not done. I still want to be alive.
And I can’t control what happens.
I can find a space within this. I know I will find peace. I have to. I’ve been committed from the beginning, to going where this takes me. But I had about six months, when I was recovered enough from treatment to feel like myself, and I could think I was done with cancer. All that time, these tumors were growing inside me undetected.
I don’t know how I feel. There is no conscious betrayal. My melanocytes went crazy because evolution hasn’t told them properly how to turn off reproduction. Sometimes they don’t shut off; mine didn’t. There is no intent in that. My body never meant or wanted to be taken over. It didn’t collude in its own destruction. Cancer just happens.
I have nothing to get angry at. And love will heal—but it does not cure. Here I just am, until something destroys the disease or it does not.
I am used to the circumstances of my life being dictated by my choices. I have made all the right choices, in this—even before I knew it, when my enrollment in grad school meant I had to carry health insurance (therefore I had the chance to). I wore hats before I was diagnosed, and sunblock in the summer—not every day of the world, as now, but with the level of consciousness I had.
I’ve done everything right. And I still got sick. I can’t blame myself, because I haven’t done anything wrong. I can’t be angry with my body, because bodies are hard-wired for health, and it did the best it possibly could. I can’t be angry with the disease, because it was no more than an evolutionary process that got out of control.
There is no intent anywhere. And I am losing control for ever. That’s what is really hard.
I’ve been sick from cancer treatment before. I know I can do it again, as long as my body can physically tolerate it. I don’t like it, but that’s not why I’m anxious. I am anxious because so much is being taken—and I may not ever get it back.
I’ll have a blood draw this morning, and consultation with the doctor. They’ll admit me later when there’s a bed free. Tomorrow morning, treatment starts.
I’ll give the nurse my arm; she’ll find a vein and start the IV—and there will be no getting off this bus, ever again. Six percent of people get to have a full remission. I don’t dare to really hope I’ll be in that group. (Margaret, I remember your note. Thank you.) I will never not be looking over my shoulder—literally, as there’s a palpable tumor on the right one—ever again. This is not the life I chose. But it is mine.
And I have to find a way to really live, this life that I have now.