Nerves

Alright. Started feeling nervous last night. I made the considerable mistake of doing some online investigation into so-called radical nephrectomies, where the surgery is open and through the side rather than laparoscopic. There are videos for the strong stomached on youtube. It wasn’t anything surprising, though it was tough to imagine my diaphragm being sewn up. I also looked around a bit about the recovery. Granted, part of my theory is that my experience won’t be as painful or long as the average patient, given my age and status as patient wonderkind. Yet my faith was shaken when reading about people needing a nurse’s help out of bed, or even to roll over in the bed. Yikes!  Average recovery sounds like 4 weeks. I’m hoping for 2 ½ to 3. Today I've been breathing deep and marveling at my previous attitude. We’ll see!

I’m also nervous about learning what has been growing in there. It was almost easier to believe that it WAS cancer, 98% chance. The second urologist (my first one died unexpectedly before Christmas) said the chances were closer to 50-50. Good news right? Now, not knowing which way it will go, I am as nervous about learning that as I have become about the surgery itself. By disposition I don’t anticipate much in the future good or bad until it is upon me, but I do struggle with hoping against fear. I’d rather know and not need to do either.

There’s the added bonus that they might be able to determine what caused the original failure, though no one has mentioned that, so maybe it isn’t a bonus after all. When they biopsied my native kidney in 2001, they found only scar tissue and couldn’t figure out what had happened with such a small sample. With the whole kidney maybe they can answer how this all started. This is another question I was not at all concerned about until they might be able to answer it.

I knew all of these things last week and actually felt good about going into the surgery – a new experience, some down time. That was a little naïve, though it was what I felt. Somewhere between there and here is a balance. Or maybe living in the naïve was better – at least naïve about what a painful recovery means. So it goes. In the balance – ready for the surgery, a bit nervous about what I will feel like on Thursday.

Lots and lots of well-wishes and generous offers from students family and friends. It is unusual to have this much attention going into the hospital. Typically I'm out and healthy again before most people know anything happened. Hearing from so many has helped me feel the hopes and fears much more profoundly. My typical MO is to barrel through health crises head down. This has been a much more reflective process and I am better for it - I mean that. Thank you. 

Like the rest of this journey, I am not going it alone.  Thank you so much for your thoughts and prayers. Thanks especially to my lovely partner for her patience with me, and for all of the small ways she makes my life better every day. C and I have a dinner and a movie planned for tonight which will be lovely. Additionally, I will be enjoying my free mobility for the last time in a few weeks. Stretching, taking stairs two at a time and some dancing to the new JT album. Thanks for reading!

Blood Clots and Apricots

In November, when this whole surgery debacle started, the main complicated factor was this blood clot. If you remember, the clot was discovered when my right arm became swollen and for the first time in my life I had a waddle of flesh hanging from my body. After a confusing ultrasound (for the techs, not me – I almost fell asleep), it was determined that I had a blood clot beneath my right clavicle (possibly the superior vena cava, where the blood from the right side of the head and right shoulder drain back into the heart.).

It was that same day (I think) the growing mass in my left kidney was discovered during a CT scan of my lungs. They had seen the growth in 2007 and was something they would ‘keep an eye on.’ It had grown from 1.4cm to 2.7cm, they decided it was possibly cancerous and had to come out. How they were keeping an eye on it is beyond me – without that incidental scan it could have been another three years before they would happen to see it. Not complaining – but it is one of the several reminders of the ‘art’ of medicine I will relate in this post. Perhaps I’d been naively over-assured by the power and precision of medicine, covered by solid insurance.

This past week I had two pre-operative appointments to ensure everything was good to go before surgery. One was a standard check up to investigate any headaches, fevers, coughs etc. The other was a second ultrasound of my shoulder to see about that clot (or Deep Vein Thrombosis – DVT). If it remained, they might postpone the surgery.

I believe I wrote some about this last time – that ‘they’ say 3-6 months to fully resolve DVTs but no one really knows for sure. They keep people on the blood thinners for that period of time and the clots are resolved (proven in thousands of studies), though at what point within that time frame is unclear. They no longer do follow-up ultrasounds on DVTs because they are so confident the clots resolve in that time frame. My first thought was – on whom are these studies conducted? guessing not healthy-ish people in their 30s. My second thought was – unlike most people, I’m on a time-frame, balancing the clot against getting this growth and the kidney removed. Should it be 3 months and be on the safe side with the clot? Or 2 months and get the kidney out of there? I scheduled the surgery for 2 months rather than 3 with the blessing of my kidney doc – the fabulous Dr. Hall. What was a bit unsettling was that scheduling the date was my call.

The second call I made about my medical treatment came during my pre-op in the clinic. The doctor asked about all sorts of possible maladies and gave me a once over. Her supervisor, or ‘attending,’ (I should add that I go to a teaching clinic attached to Abbott NW), joined us and asked if I wanted to continue taking blood thinners after the surgery. Now, the doctor who followed me during the pneumonia episode in November, told me I will be on blood thinners for 6 months, suspend the treatment for surgery at 3 months when the clot risk is lower and then resume blood thinners afterwards. A different doctor asking if I wanted to stop blood thinners after surgery conflicted with that. I liked the second doctor better and decided to stop blood thinners after surgery. Just like that.

The ultrasound two days later was a repeat of the confusion of the first. There were again two techs rather than one, and they had a hell of a time trying to make sense of things. I had veins where there weren’t generally veins and they seemed to think some of them were flowing backwards. I didn’t doubt it – pulling the dialysis access out in 2001 had done some damage up there and my body had adapted. They spent 45 minutes scanning and taking photos and sent me on my way.

The next day I connect with the medicine clinic about the results of the ultrasound. The surgery is scheduled in 5 days, I have sub plans, I’ve made all kinds of arrangements with grad school, a lot of people have been wishing me well – I’m interested in having a clear reading of the ultrasound and moving ahead with surgery. The nurse tells me that the ultrasound was ‘unchanged’ from November. My heart sank.

I clarify – ‘unchanged?’ – ‘yes,’ she says. ‘The doctors read that to mean that you didn’t have a clot in November and you can stop the Coumadin today.’

Whell.

So I have a crazy vein structure in my right shoulder, but it’s working just fine. Surgery is a go for Wednesday. And I no longer need to worry about a pulmonary embolism ending me without warning. So – good news.

I’m gearing up for a big vulnerability I’m going to attempt, which is to share pictures of me pre and post operation, and write a bit about what that’s like. I’ll post a pre-op description of what is going to happen with whatever bits I can find online. Meanwhile, thanks for all of the thoughts and well-wishes – it makes a big difference to C and I; we feel it. Thanks for reading!

What Support Is

More than any other post I've written I thought and stressed about that last one.  I asked C if I was over-sharing (a few times), and she suggested that I might relax about the whole blog thing and to not over-share worrying about it.  That people would be supportive and would be interested in knowing and so on and of course she was right.

In the twelve years or so 'AK' (after kidney? I'm experimenting) I've been overwhelmingly supported in lovely, pragmatic, real and non-pitying ways.  I remember thinking that the initial attention and support (both welcome and uncomfortable) would wane just in time for me to lose direction or fall apart entirely.  Not the case.  I suffered my quarter life crisis like everyone else and adjusted to the new post-undergrad world in quiet, nondescript ways.  Without fail folks have been available to me in just the way I would have wanted and have tried to be available myself.  I did not become 'that guy who had the kidney transplant' except to save distant acquaintances who lacked better conversation topics - and really, health is as good a conversation topic as any, if a little premature for people my age.

But to this day I struggle to talk about this or that issue being hard or troubling.  It has been tricky to self-advocate when my emotional well-being is at stake.  On matters of health I have been a vociferous advocate for myself; I ask questions, make suggestions and have filed complaints.  I consider myself a great patient, I try to have a sense of humor, to be light hearted, to be empathetic to my caregivers - but I am not shy about pointing out when something is wrong.  But so long as everything is going 'right,' I struggle to bring myself to talk about how uncomfortable or painful a procedure was, or how lonely it can be in a hospital.  In fact part of what made me feel like a great patient was that I did not talk about (I have to force myself to not use 'complain') how I have struggled.

Good nurses ask me how I'm doing - they know how I'm doing, they are just giving me an opportunity to share it - and I say I'm doing fine with a smile.  And they smile.  And for a bit there it is fine, just two folks bumping into each other, saying hello.  There is so much reenforcement for putting on a brave face, I was commended over and over for handing everything so well.  Largely I think I did handle it well.  And I believe my positive attitude helped me through the tough spots.  The tough spots I remember are a limited bunch amid a wide range of clinic visits, procedures, and major life adjustments.  I feel like I've navigated this experience well.  Yet the flotsam remains, and no one is a rock.  Or an island or whatever.  Porcupine.  So given this history of supportive friends and family and a good attitude welcomed by my caregivers, why have been I so reluctant to delve into the story in more than cursory ways?

Geez that's a big question.  Maybe it's time for a little tangent.  I mentioned the numbers game yesterday - that the thing to do now was wait for lab results and take it from there.  I had a dream this morning that I got a call from someone named Kevin at the clinic who told me, with evident relief, that my numbers were down to 1.95 and asked jokingly what I was doing with those numbers.  You silly man! What are you doing with your numbers!  Goodbye Kevins!  Then I was in the basement of my childhood home with life-sized pictures of underwear models from department store ads ....

No, I can't do this topic justice.  Not yet at least.  If six fig newtons can't get me there nothing can.  Too many gender rules, too much family history - it would take more therapy than I can afford right now.  Perhaps its enough to say that accepting support is what I am working on right now, and it is no small task - even in relation to the thing I am receiving support for.  I have survived this ordeal so far, and with some grace.  It is complicated and difficult to be vulnerable.  Publishing that last post, and now this one, brings me closer to the heart of this experience as much or more so than waiting for lab numbers.  Which by the way remain forthcoming.  I guess I'm saying that for me the lab numbers are secondary to my sharing the story.  The numbers will be what they will be and my next few weeks or months will play out accordingly - there is little I can do to affect that.  My struggle is to remain small and vulnerable in the face of this.  Like the last fig newton.

Thanks for reading!  

Once upon a time ...

For most of the last year I have anticipated sitting down to develop my experiences abroad into something deeper and touching more upon, with the benefit of hindsight, my emotional states at the time.  India in particular unsettled me deeply and I have struggled to find the language to express how it left me when I left it in the spring of 2010.  However, the direction of the next few threads will concern another facet of my life; one somewhat related to my Indian experience.  Almost twelve years ago, in August of 2001, I was diagnosed with kidney failure.  The first two years were a wild ride, comparable in a number of ways with my experience in India - it was a paradox of the intense and the ordinary, being hungry without being sated, and interminable in that instantaneous way - an off year of life.

Then from 2003 on my life returned to its normal trajectory - I started a career teaching, I lived in a few apartments before buying the duplex where I currently live, and as you all know I traveled enviably, extensively.  Thanks to the generosity of my uncle Bruce and many many others, my life was barely compromised by my chronic illness.  Like India, the period of my early twenties feels comfortably distant, dim on my horizon.  

Yet while I can choose to avoid the subcontinent in my future, my transplanted kidney function will most likely slow, and at some point it will need to be removed, setting in motion the same machinations that interrupted my senior year of college.  No one can say when that might happen - there are few people in my situation who might serve as guides, I am otherwise healthy - there was no known cause for my illness, and I am very young relative to most people with kidney failure.  I have labs done every few months to keep an eye on my blood levels.  With a few small adjustments, I have been on the same course for nine years.  Recently, however, my numbers have started to creep, and labs done last week indicate that there might be something wrong.  

There are so many aspects to these stories that I have not told - so many of my thoughts and feelings.  It is difficult to create a linear narrative.  This was my initial hope with this blog- to suss out the untold details and meta-narratives of my world travels; how the music I listened to in different countries remains locked there - lilacs, perfume or that smell in an old brick building - I turned on Beach House to sit down now and my mind keeps playing images from Morocco.  Morocco feels as distant to me as it must to you until this music starts and slam I am on a bus, climbing a hill, lonely and scared, clinging to the English speaking travelers I met.  

I had labs done today to double check the results from last week.  Leaving the clinic I called C and opened a bit in the car.  I flashed back to a number of episodes that continue to resonate in my memory - experiences impossible to relate.  Flashes of being in a dialysis center, of outpatient procedures, of doctors and nurses, 9/11, coffee shops - all neatly associated with this pervasive facet of myself that has been dormant.  I had not yet written about India because I knew it would be right there waiting for me.  I knew that time would not dim what I had experienced there.  Even so, I underestimated how close these 'kidney' experiences were to me.  

I have not talked about almost any of this publicly for reasons that are difficult to explain or understand myself.  I often think that I do not want to complain or sound whiny, but it also feels private to me, like a secret weapon almost.  Certainly some psycho-babble could explain a lot of this.  Even what I wrote so far has felt intimate.  

The labs look at a few indicators of kidney performance, most importantly creatinine.  Creatinine is exclusively cleared by the kidneys and thus is a useful indicator of kidney function, and it was my creatinine levels that have recently caused alarm and raised this blog post.  

A 'normal' creatinine is 1.0 - mine had floated around 1.5 - 1.7 for years.  When I returned from traveling, the number drifted up to around 1.9 - or roughly 50% of healthy kidney function.  In the last few weeks it spiked at 2.1 and then last week at 2.35.  That is a pretty high number, and the clinic responded by scheduling a biopsy for next Tuesday, pending similar labs drawn today.  

So that's where we sit today - wait for the numbers.  It's possible the numbers will adjust and we will be back to normal and wiping the sweat from our brows in relief.  Yet I must confess that this most recent health incident is weighing heavily on me.  The world shifts slightly on its axis with a potential adjustment like this on the horizon and I'm not terribly hopeful about it.  

This afternoon, however, it is summer.  Tony and I posted quite well in another Urban Assault, 5th overall this time.  C and I are planning on burgers, wine and backgammon tonight.  And I'm thinking about buying a new bike!  All very exciting things going on, and now time for an afternoon nap.  

Thanks for reading!