Pivot

Yesterday was surgery day.

I’m feeling more settled with my body being such a central aspect of who I am right now, which is good because it absolutely is central to who I am right now. I don’t mean my internal self, I mean how I move through the world and how people think and talk about me. Friday morning, day three after the bad news, I’m rereading my entry from the night before and realized that I’m managing my social media profile, working to control the story. I’m still making sense of this, and I wanted to convey that sense of incompletion in my post – how scattered I still am by it. I was telling a friend that if my life was not as solid as it is, if my relationship with C was rocky, or if I was single, or if I really hated my job, that this crisis could have precipitated a bad period in my life. It feels like a pivotal moment. As I wrote, there have been a number of these calamitous moments, so unexpected, so unusual, but most of them happened a long time ago, before I awoke to myself. I have no emotional memory of failed cross-match in 2002, or losing my Mom’s kidney to the neurofibroma.

I’ve worked to be present and intentional about how I process the circumstances of my body, but this one is testing me. I’m feeling so many different and contradictory things about this. I feel lucky – I do – phenomenally lucky. I am supported by hundreds of people, and now by many strangers. My vulnerability compounds this support. I am more and more encouraged to risk being vulnerable, to tell my story, to accept this madness as part of who I am. And every time I do that I am rewarded with support, and ultimately transformed relationships with incredible people, some of who share similar stories. I'm working to embrace the disruption - on Saturday I tried yoga! And it was great! 

At the same time I’m feeling angry that this happened. And, more deeply, I feel a profound dread that I will never feel healthy again. The anger is in my chest, the dread in my gut. For three years I've anticipated the transplant as an abatement of what has felt like a perpetual health crisis. I stumbled on the blog of Nora McInerny Purmort (many of you already know and love her), who has written about her husband’s brain tumor and death here - this particular link was posted a few days ago. She wrote about the mess of grief and articulated a number of thoughts I’ve been kicking around, especially how being angry is feels gross and unproductive but to feel it anyway. And that it is “not my job to make my life more palatable to other people.” I’m on an unavoidably human journey, and, as I’m realizing, the more human the better. What does human mean? Whatever contradictory thing I am in that moment! And more, more of it! Thanks for reading.

The Odds

This is the second time a transplant was canceled because of a positive cross-match. My aunt Gigi (whose birthday coincided with the day Jackie heard she was a match) was to donate to me in August of 2002. A week before the surgery we had a positive cross-match. And from what I can tell, the frequency of this kind of calamity is pretty low. So I asked for some numbers.

Julie, my transplant coordinator, checked with the Immunology clinic at the U. They process about 800 of these final cross matches per year, with about 2 positives per year. 2. Out of 800. The odds of this happening twice are 1 in 160,000.

Let’s honor all that with a deep breath and a collective “are. you. fucking. kidding. me.”

This is not the first time I have defied odds. My Mom donated a kidney to me in 2001, the first one. Four months later the donated kidney had developed a neurofibroma, a nerve tumor that needed to be excised, taking the kidney with it. That I know of, that has never happened outside of me. Renal cell carcinoma, the cancer that showed up in my native kidneys a few years ago - totally unrelated to my renal disease - is also exceedingly rare among young people. They also discovered a type ii papillary renal carcinoma (a rare cancer) in that kidney, which is why they took the second. At this point, as you can imagine, I don't put a lot of stock into statistics. 

This was a trauma - I’m recovering from a trauma. I can feel it physically. I could feel it when she told me on the phone. Yesterday I experienced that thing where I woke up and had a moment before I remembered what had happened and my stomach sunk a bit. I’m reeling from it, I’m not sure what to do – I get that there’s no wrong thing when it comes to responding to these things, but there’s no right thing either. I go from feeling angry that this happened to feeling overwhelmed with gratitude to kind of numb.

I’m getting more agnostic about making meaning from these events. My transplant coordinator said that if the transplant had happened earlier, I might still have developed the immunity and had a bad rejection. I don’t know if that’s true. I do know that this whole mess started in the fall of 2013 with pneumonia. I was hospitalized for a week and missed three weeks of work – sicker than I’ve ever been. They happened to see a growth in my native kidneys during a scan of my lungs that turned out to be cancer. That precipitated my two nephrectomies in 2014 and my two-year wait for a transplant, ending a few weeks ago. If I didn’t have pneumonia, that cancer could have metastasized and I would probably be dead. I don’t know.  There are an awful lot of lives I’m not living, and I’ve never found it very productive to imagine them.

I’d like to thank Jana for taking the initiative to post another call for a donor, and for encouraging others to post it. And thank you again anyone considering it. It is a bit strange to be the person whose face is floating on all of those posts, to be the subject of such a public story. It kind of feels like I’m not entirely in control of my self, that I’m being attended to out in the world by so many people. But I’m grateful – it’s kind of my Lou Gehrig moment.

On Wednesday I went to work at school. I had dialysis, and I figured that would go easier if I stuck to my routine. Today, however, I stayed home. Corinne and I had ordered a LOT of Girl Scout cookies last week and they were delivered last night. So I started in on 20 boxes of Samoas, watched some Netflix, marveled at the immense response on Facebook and relaxed. I continue to feel all the things, some of them a great deal. Tomorrow, it’s back to work and dialysis. Thanks for reading. 

UPDATE: My mom did some research and discovered that as of 2010 there are five known cases of a neurofibroma tumor in a kidney - that's not transplanted kidneys, that's all kidneys. Crazy! 

Bad News

Well, friends, I have bad news. My final cross-match with Jackie was positive, apparently way positive, which is way bad. Positive means non-compatible. My immunity apparently changed since the first cross match and I have developed a specific immunity against Jackie’s kidney, so the surgery is canceled. Oof.

Jackie and I had done our final set of tests yesterday, including the blood draw, to get everything finalized, so I was waiting to hear about the cross match. I knew that it could come back positive, and I worked to be cautiously optimistic, moving slowly, but honestly I was not at all expecting to hear that news, When Julie, my transplant coordinator, who had the unenviable job of breaking this to me, told me that she had bad news, I was stunned, I felt it in my teeth. It was during a break in my Critical Pedagogy class so I was able to answer her phone call. She said a few things I don’t remember and that was it. I sat in a stairwell and breathed for a while. Processing. I thought about spaces on my calendar. I thought about how I would tell people. I thought about going back to class as if nothing had happened. I thought about how disappointed Jackie would be. I wondered what I was feeling in my teeth, like I had chewed on aluminum foil. I thought about how, earlier in the day, I had realized that if the cross match was positive and the surgery was canceled, how I would feel devastated. That’s the word I used, devastated. I wondered if what I was feeling was devastated.

I had shared with the class that I was planning to be gone the next two weeks, that I was having a transplant. When Tim, our professor, came back into the room at the end of our break, I did my best to explain what had happened, and said I was leaving. They shared their condolences and I zipped out of there.

I had biked to class for the first time since winter, and biking home I managed to cry while biking, which was a first for me. And despite how floored I was the day was beautiful, it was a beautiful day to bike.

It’s been about two hours since I heard. I put away my pre-surgery drugs, and my pre-surgery instructions. I put dialysis back on the calendar through July. I cried, and cried some more. I’m not sure what happens next. Well, I know that tomorrow I go back to dialysis, and instead of having one more session, they are again laid out before me for weeks to come.

This is rough. I’m still working out how to think about it. This renews a fear I’ve had for a while that my health declined in 2013 with the pneumonia and that’s it; I will never be healthy like that again. At the same time I believe that something will work itself out, somehow; that in four months or five months, or a year I will have another transplant and remember these days as part of my story. My reality is both of these. I am not promised anything. And I have the same supportive people around me now as I did this morning. Given the choice, I’d rather be nervous and excited about my impending surgery, but that’s not what’s next. Thanks for reading.

Gratitude

Hello dear readers.

I am starting to feel the impending surgery, starting to get preoccupied. While I hesitate to go there, I am thinking about the weeks and months after. It is hard not to. I’m noticing changes. I’ve already started letting go – or putting my head down as I count the days. Since the fall I’ve spent the first hour or two at dialysis by doing work – either grading or reading for my class at the U. As you know I also finished work on my teaching license this fall (yay!). So I’ve worked to keep doing my things, to keep living my life. But since I heard that the surgery was scheduled I’ve been less concerned about being productive, about getting things done. I noticed that I no longer do work at dialysis – it’s all Netflix shows and cribbage on my phone. For a long time dialysis felt like a Monday, the interminable expanse of the week ahead of me. Suddenly it’s Thursday afternoon, or even Friday morning, when I’ve lost track of the week and the stretch of Saturday and Sunday morning lay, invitingly, before me. I’m worried less about being productive – a good feeling certainly.

Thank you for your overwhelming response to the good news. It is humbling to receive so much love and support from you. The capacity for love and care from people continues to astound me. I marvel at it.

When I am open to that compassion, when I feel it, everything is OK. I don’t know what it is about me that resists that compassion, that insists upon remaining outside and battered. I do know that remaining open to that compassion is a struggle – it is an awful lot to feel. It takes a lot of strength to be that vulnerable. 

The other day a colleague of mine stopped in to wish me luck. We talked a bit about this blog and wondered at our colleague Jackie, at her generosity and care. Then he said, “Its hard for people – its hard for me, I assume its hard for some other people – to know that people care for me.” “Yeah” I said. I teared up, and I think he teared up – it was a moment where everything felt OK. Thanks for reading!

The Call Was Answered

If you want to visit me at dialysis, see what it’s all about, your time is (hopefully) running out. I have a surgery date, and it is soon: February 22^nd. It is a huge relief and entirely unexpected to have the surgery so soon. As always, the date comes with a story.

My scheduled donor is a work colleague of mine, Jackie. Jackie approached me in the fall with questions about kidney donation because she was interested in donating a kidney to a stranger, not knowing that I was on dialysis. Imagine that conversation. I did not expect her to pursue the testing (I don’t really expect anyone to pursue testing, to be honest – it’s too much to expect), and I certainly did not expect her to be a compatible donor.

Jackie visited me to ask about donating a kidney in part because I spoke, in 2008, about donating. This was a presentation during our school Justice Week concerning disability. While I don’t remember doing this, the talk planted a seed for Jackie. I’m telling her story a bit here, but that idea germinated for her this fall when I put out a request for donations to the Kidney Walk fundraiser (a request to which many of you responded generously!). She took on the screening process aggressively and heard that she was a match on the solstice, December 21^st. (I was reminded that the 21^st is my aunt Gigi’s birthday – Gigi, who was to donate to me in 2002, story for another time). Jackie asked to meet with me in January, and I swear I had no idea about what. She told me that she was a match and hoped to have the surgery in February. Given our school calendar, this would put our recovery over a long weekend. February seemed wildly optimistic to me; we found that Bruce was a match in January and the surgery was scheduled for April. But a week later I received a call that the surgery was scheduled for February 22^nd. Even the team meeting, the doctors, coordinators, and surgeons, was able to schedule the surgery a week before I expected - a week before I was told to expect it. Throughout this, Jackie pushed the process and was enthusiastic and hopeful. That’s why the surgery is happening as soon as it is – her enthusiasm and hope.

I am characteristically cautious as the date approaches. We have a final set of tests the week before to confirm the match, and any number of other things can happen between now and then. Yet the relief I feel at the impending surgery is immense. I’m counting down dialysis treatments (6 left). And while I am working hard to temper my excitement about life beyond transplant, I am starting to imagine my free afternoons, and fewer, and much smaller, needle sticks.

Dialysis has mostly been without incident, though my Friday “poke” was a bit rough. I asked the tech to try a different site for the needle (as the site is supposed to be varied to preserve the graft, and because after repeated pokes in the same spot my arm was getting sore), but they couldn’t cannulate the graft and it infiltrated. That’s happened a few times before – basically the needle pokes through the graft and causes a big bruise. My forearm feels sore today. The graft is still working, however, and will probably make it for 6 more treatments. But that’s the relief; it only has to make it for 6 more. Every time I say that, and I will add here, I remind myself that the transplant might not work, or it might not work for very long. It is a sobering refrain.

On the whole however I am optimistic, and as always part of that optimism comes from you – your attention, thoughts, prayers, and love. Especially those of you who considered donating an organ to me, and especially especially those of you who pursued that. You are part of the forever story of my life.

I read that last part to Corinne. She asked if I was expressing gratitude to her specifically, I said no, she said DAMNIT. So I’ll add that here: thank you to my partner in all things silly and lovely, Corinne. Thanks for reading!