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!

Identity and Time

I’ve noticed that my memory is divided into epochs divided by the significant changes in my life.  I first noticed this in college, when I had much more clear memories of my junior and senior years of school then my freshman and sophomore years. I realized that between my 10^th and 11^th grades I shifted as a person – becoming more confident and self-aware. The ‘me’ who was looking at the world was different, so the memories of the new me were much more ready-to-hand than the memories of the older me. I believe my life shifted again in my mid-twenties as a response to my kidney failure, and again when I fell in love with and made a life with C (where I’m writing from now). If I assume an infant/child stage, I am currently on my 5^th self, living my 5^th life.

Today I made the delightful discovery that I’m not the only person who sees things this way. My new favorite website, www.brainpickings.org, featured an article on a new book by Claudia Hammond called ‘Time Warped: Unlocking the Mysteries of Time Perception.” The article, by Maria Popova, explains the idea of a ‘reminiscence bump:’

Most fascinating of all, however, is the reason the “reminiscence bump” happens in the first place: Hammond argues that because memory and identity are so closely intertwined, it is in those formative years, when we’re constructing our identity and finding our place in the world, that our memory latches onto particularly vivid details in order to use them later in reinforcing that identity. Interestingly, Hammond points out, people who undergo a major transformation of identity later in life — say, changing careers or coming out — tend to experience a second identity bump, which helps them reconcile and consolidate their new identity.

This certainly feels like how I have experienced time and identity, though elocuted more impressively.

I expect (and hope I think) to have a few more of these epochs in my life. I expect they will coincide with the big moments of parenting, maybe retirement, deaths births etc. In the mean time, my life seems to be primarily punctuated with surgeries and hospital stays. It’s telling that the surgeries unto themselves do not constitute major life events. My surgery next week, for example, will likely, hopefully, not stand as a milestone. I have been eager to have that kidney out, and when I found I had to have it out the date felt far far away (two months, ha). As the time neared my eagerness turned to anticipation and then to some apprehension as it became more real. Suddenly the surgery is next week (suddenly, ha).

I’m not nervous and anything going wrong. I am nervous about what they will find (still hoping, in spite of my better reckoning of hope), and a bit nervous about what it will feel like. I find that what I choose to share with people reveals how I actually feel about it, and I’ve been talking about the pain. The recovery is supposed to be quite painful, and for a while I was curious as to what ‘quite painful’ would be like. I’ve experienced lots of things, though my surgeries were never very painful (I never took pain killers, for example). I know well what it is like to be physically uncomfortable and I expect the pain to be something like that. I can accommodate some pain; discomfort must be endured.

I think I’ll save further reflections on the surgery for another entry. Thanks for reading!

I Finally Felt The Thing Everyone Says And It Didn’t Feel Good

I should start with this – never, that I can remember, have I been bitter, resentful or angry about any of the health crises that I have experienced (I wrote ‘that have happened to me, but that didn’t feel right). I have gone so far as to say that I would rather this or that thing not have happened, kind of in the same way I might say that I’d rather it not be raining. My kidney failure and subsequent adventures have not felt more or less than the trials that everyone experiences at some point in their lives. I believe that we are all tested and prodded by life in uncomfortable and unpredictable ways.

I’m not claiming any kind of hero status (see previous post). There are moments for me that are more difficult than others, and times when I recognize that the specific moments of my life are fairly unique to me, and that I am afforded a certain deference for my body. That being said, I have yet to meet someone with whom I would trade maladies.

In my life I have heard from people, almost from day one of the kidney times, that I’m too young for this to happen to me. That is it unfair that I have to face this, that I don’t deserve this. I understand that saying ‘you’re too young’ is a form of sympathy. It can be a way of people saying I’m sorry that this happened to you. At the same time it feels as though these expressions are appealing to a greater order in the world. In the movie ‘50/50’ (which is fabulous), Joseph Gordon-Levitt’s character is diagnosed with cancer. He is shocked, claiming his healthy lifestyle - ‘I don’t smoke, I exercise, I eat well … I recycle …’  It was a pointed joke - as though we can somehow inoculate ourselves against these random and painful crises.  

As you know the past few months have been a difficult time for me, health-wise. This week I’m trying to schedule the surgery to have one of my native kidneys taken out. I’m trying to miss the least amount of class time at school, and to have it as soon as possible. The mass in the kidney is likely renal cell carcinoma, which is a particularly nasty cancer. It is well contained, but still – it feels like I have a time bomb in my back. One doctor is saying to wait three months because of the blood clot, and that the clot is already resolved. I’m trying to have it a bit sooner – two or two and a half months. Scheduling this is a headache. [UPDATE: As of yesterday the surgery is scheduled for January 22^nd! Which is good – get it over with.]

Yesterday, carrying these decisions and stress, for the very first time, I entertained the thought that maybe I AM too young for all this to have happened. That I deserve a life without the constant overhanging stress of when I will be in the hospital next, or when I will need to deal with another unforeseen side-effect. Why did this have to happen to me?

These thoughts were immediately followed by the humility they call for – what do I ‘deserve’ from life? What does life owe me? Is there a contract somewhere that promises a smooth ride, with a few bumps when we are seasoned enough to weather them? This is clearly not how life works. Worse – as I thought about the phantom life I could be leading, my feelings were not hopeful or energized. I felt bitter and angry, resentful of the people around me who supposedly lead ‘easier’ lives. That’s not me. I am not those feelings.

I am not owed anything from the world – there’s no contract, no guarantee.  Tragedy does not live elsewhere, where it is distant and tolerated and accepted as a balance for the cosmos. I am not too young for the unique experiences of my life.

I don’t believe that any of us are protected by anything at all – that we are all an accident or circumstance away from crisis, and this is invigorating for me (perhaps because I have been through it). This makes the highs a bit higher and the lows a bit lower. It helps me to pause and enjoy the world around me. I don’t want to live in a world with bumpers. The fragility of life makes it precious. 

Thanks for reading!

Hospital adventure #5, 2013

Hey folks –

I was compelled to post that earlier essay I wrote because I was, at the time, in the hospital. Again. C figured that it was the 5^th time I was at Abbott this year. This was one of my longest stays – exactly one week. I went in Sunday afternoon November 10^th and got out Sunday afternoon the 17^th. A clear week. This was also a stay where I got quite a bit sicker before I started to feel better. Plus, there were a few surprises along the way.

What further complicated being away from school was that my high school lost two students the weekend before I went in – car crash and suicide. It was hard to be away during that time, though I would guess it was even harder to be there.

I mean here to relate what the week was like – what happened and what it was like to experience it. I generally experience narratives like a road trip – chronological, cause effect, linear. You can follow it on a map. Hospital stays feel more like an extended drunken adventure. A chaotic, confused journey. Hospitals are places out of time. True, I generally slept from about 1230 AM to about 6, when it is nighttime. But it is not sleep anymore than lying in bed all day is being awake. Time is punctuated every 3 or 4 hours by having my vitals checked (blood pressure cuff on my arm, thermometer in my mouth, blood oxygen level meter on my finger), having blood drawn, and the error alarms on my IV machine. After a few days of this there is no time.

Tell it right now, nice and easy. Take your time.

There was an instance when I was counting minutes during this stay. I had a pneumonia that was not responding to antibiotics and they wanted to figure out what bug was in my lungs making me sick. C and I are trying to figure out on what day this happened, this procedure where they sedated me and put a scope in my lungs to take some samples. Bronchoscopy. Wednesday.

So because I was to be somewhat put under, I couldn’t eat or drink leading up to this procedure, which was at 11AM. For whatever reason, the ‘nothing by mouth’ started the night before at midnight, when I was extremely thirsty. There have been a few moments of this in my hospital life, where I was not allowed to have anything to drink and was thirsty beyond imagination. My tongue, mouth, throat were dry. I couldn’t swallow. This went on for two hours. I couldn’t stay still. All I could think about was how good cold water would feel in my mouth. An ice cube. Have you been thirsty like this? Every breath made it worse, breathing in a desert. I rinsed my mouth in the sink a few times, which helped for a moment or two. Eventually I gave in and drank the best three glasses of water in my life. It was 2AM – nine hours before this procedure, and it was totally fine.

That was Wednesday – the bronchoscopy. Wednesday afternoon (or possibly Thursday) they did a CT scan on my lungs to see what there was to see. Around this same time, I noticed that my right arm had swelled up around the elbow, just fluid, but I had a fun wobbly arm for the afternoon. They did an ultrasound on my arm and shoulder to look for clots and found one – superior vena cava I think. The ultrasound rooms are nice – dark, warm – the gel used for the scanner is warm. It’s quiet aside from the sounds of the veins they are ‘seeing’ on the ultrasound, which are pulsing and womb-like – wom wom wom wom. There are pretty reds and blues on the screen. On me, I was missing a vein – right side near my collarbone. Same vein where the tech pulled the dialysis catheter in the last entry. Writing this is beginning to feel interminable. It was a week of things like this. I was on oxygen for two days. My creatinine went up to 3.8  (from 2.4) then back down to 2.1. They found a tumor (during the CT scan of my lung) in one of my native kidneys and will remove the kidney sometime this spring. I watched The Avengers, Captain America, Thor, Skyfall, Austin Power and three seasons of The Office (thank you Netflix), but there were two days when I didn’t watch or do anything. At one point when someone asked me why my kidneys failed originally I told them I masturbated too much. That was a highlight.

It is so hard to capture all of this. This reads nothing like all of it. Would pictures help? I guess I could say that at times it felt interminable, like being thirsty, and some days drifted past me without my knowing. Just a different way to be a person I guess. I had to adjust my notion of who I am a few times - being on oxygen was new and scary to me, I didn't friends of family to see me with the tubes on my face, and taking home the blood clot and future surgery were big new things. I am now a person who has 'been on oxygen' and 'has a blood clot', along with everything else. 

Back home now, for a few weeks, the specific memories of my stay are already beginning to slide together. My body is recovering slowly from the pneumonia and whatever went with it, but I am improving by the day. I have passed the point where I don’t remember what not feeling sick was like. I passed it today, but I passed it. That was a great feeling. Thanks for reading!