The Surgery

I think I’ll frame the surgery itself within the two days where it was my primary concern. Tuesday, a week ago today, Corinne and I both worked full days at our jobs. I picked her up at 4:45 and we went to the Bulldog NE for burgers and watched American Hustle at St Anthony Main. The evening was a good one for relaxin and distractin. My nerves had cooled somewhat and I thoroughly enjoyed the movie. Going to bed, I felt like everything was in motion – the waiting was over at that point – I was fully engaged in the surgery. We shared some tears and smiles and went to sleep. 

Washing up the evening before (C was excited about documenting the event)

Us being sad / scared for the surgery

Feeling ready!

The next morning was slow and easy. C had breakfast and I couldn’t eat or drink anything, so within about an hour of waking we drove to the hospital. The woman at the welcoming desk said we could take the elevator on our left ‘when we were ready,’ which I though was a nice touch. We were ready, so we descended to the pre-op area.

It was a small crowd waiting for us – both of my parents, C’s mom and after a bit her sister. We had a lot of bags and occupied a corner of the room. I checked in and in a few minutes, enough to say hello and make airport jokes about our many bags, I was called back to get prepped.

The prep felt like a countdown, slowly ticking to surgery – blowy air gown (to stay warm/cool), IV, visits from the surgeon, blood draw, visit from anesthesiologist, nurse anesthetist, and finally the family could join me. They checked my INR level (I had stopped blood thinners the week before) and gave me the first dose of valium, which didn’t feel like much. For pain management they were going to place an epidural to numb the kidney area of the body (in addition to being put under for the surgery itself of course). This process took about an hour.  

The shirt has warm air moving over my chest, poofing it out. Many a boob joke made. 

After some tears, kisses and hand squeezing, I was wheeled around the corner and into the OR. I tried chatting a bit with the techs, though they were pretty reserved and stood along the wall with their hands in front of them. The OR was cold, though I had the familiar sensation of the cold not registering with me physically. The epidural people felt for my shoulder blade hips and ribs and told me to lean way over. I felt a lidocaine shot in my back that, like the cold, was painful and not painful, like the pain was being explained to me. The OR itself looked old somehow – maybe it had 70s tiling? I laid down, someone put a mask on me (oxygen he explained) and I was out.

Here are a few waiting room photos:

Dad and Lora

C's Mom and my Dad - who had some reading to do

At the room, Dad my nurse and Lora

I woke up on my left side in a great deal of pain. I became aware of my IV pole with a yellow box on it, and a woman telling me something about the epidural. My side burned, and whether I moved or lay still, I was uncomfortable. Someone said the epidural works on gravity, and should work its way to the site. I heard beeping. Gradually I became aware that there were other people around me; specifically a man facing me in the next bed, maybe 6 feet away, who wasn’t in much better shape. I heard a fair amount of groaning, and some of it was coming from me. I had no awareness of several catheters and IV lines in my body. After about an hour or this, my family came back to see me – though I don’t remember that visit well. I do remember being in less pain. Another few minutes and I was on my way to a room.

The transition from moving bed to laying bed can be tricky, as I couldn’t really move on my own. Usually I am sort of heaved by people lifting and moving the sheet I’m laying on. This time a ceiling lift dropped and connected to the sheet beneath me and hoisted my nice and smooth burrito style over to the bed. C’s family poked their heads in (all I saw of them that day) and went on their way. C sat with me a while (possibly with my parents?) as a stream of people asked me questions while I tried to keep my eyes open (fail).

I'm actually awake and looking at the camera - you can see the epidural IV in the yellow lockbox  

Thus began my recovery. Thanks for reading!

Home!

Hey folks! Back snuggly at home, on the couch, surrounded by things to eat, drink and watch. C has been taking good care of me. I’m not quite up for a full report just yet, but I wanted to drop a note here saying that all is well, the surgery went smoothly, recovery hasn’t been too painful, and all I have scheduled for this week is eating drinking and watching things; in addition to puttering around the house and avoiding the outdoors. I’ll work on the full report, plus pictures, in the next few days.

As always – thanks so much for your thoughts and well wishes. Knowing that we are not going it alone is a big part of a comfortable recovery for us. And thank you for so many offers of food, visits and errands. We are good for now on all counts, but I will certainly be up for some visits in the next few days. Thanks for reading!

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!