Health Update: No Cancer! Yay!

It’s Friday afternoon as I write this. Ellie and I are wrapping up our two-week Creative Writing session, our fourth such session teaching at MITY. It’s been a good session with good people all around, and it has been unexpectedly taxing, as always. For my part, I’ve been taxed physically. I had the second surgery on May 30^th, just before the end of the CDH school year, and have not yet been able to re-start my EPO shots that boost my red blood cell count, which still floats in the 7s. Between those and a rigorous MITY session, I’ve explored new ways of being tired day by day.  I’ve discovered head-ache tired, nauseous tired, can’t-eat-can’t-sleep tired, and ‘remember to breathe’ tired.

As expected, the surgery went as smoothly as before, though I hereby recommend not eating avocado the night before surgery, as I am convinced that it caused my post-op nausea and constipation, neither of which was much fun. Other than that, easy-peasy. I told my work that I was having a ‘minor medical procedure’ and that’s what it felt like. C and I were treated incredibly well by our Oregon family who sent us Green Fork food, by visits from friends and family including lunches walks and Mariokarting. Definitely nicer to recover in the summer than January.

The second kidney proved to have no cancer in it (yay!). Two days ago I had a CT scan to see if anything had spread beyond the kidneys and yesterday we heard that it was clear as well (yay!). C and I celebrated with a deluxe (insane) ice cream cone from Izzy’s and by having our basement drain roto rootered. I am waiting on a hematology visit to see what can be done about the low hemoglobin, but the summer continues. Last weekend we spent the weekend at C’s family cabin near Nisswa with the whole nuclear fam – the first time we’ve all been in the same room, much less a weekend at a cabin, for several years. Today marks week four after surgery. Tomorrow C and I leave to visit some Fourre relatives in Maine. And lots of World Cup throughout.

After sharing about the last surgery (and this one being a straight repeat) I’ve not felt very inspired to write about the goings on. Part of that can certainly be attributed to being over-tired and full of good life things. This entry feels a little perfunctory to me, but it covers the recent news, and is about what I feel like managing at the moment. I’m reminded of rushing through my travel entries from places like Egypt and India and Turkey. While the location feels less cosmopolitan, the stories of my life continue to feel vibrant and new, at least to me. Thanks for reading!

The Persistence of Memory

The rain – it was raining as I drove home last night. Started when I got in the car and then stopped when I was almost at my house. It was the most extraordinary thing. The smell was so powerful, it was like every moment of my life, every feeling I had in the rain was right on top of me. Biking home from working in a kitchen, the rain like a shower. Walking home in the rain, upset about a relationship. Driving somewhere listening to Joshua Tree, With or Without You. Time was suspended and I was feeling everything at once. I felt nostalgic for things that happened and for things that didn’t happen. I felt nostalgic for things that haven’t happened yet. I wondered if I was having a stroke. But the good kind, if there is such a thing. The transcendent moment people have before something terrible happens. It’s been kind of a long few months.

So after the surgery and recovery, which after a very smooth initial phase was a bit rocky for a week or two, life was normal for a time, though I think my head was in the sand a bit. Probably like everyone’s head was in the sand for a bit at the end there, the last throes of winter. And that spell was broken last night in the rain.

Our cat died Thursday morning next to me in bed – I woke up to his last exhale, his body limp. I shook him a bit, said his name. I didn’t know what to do and knew enough to do nothing. His eyes were open, but ‘unseeing,’ like they say. Then he was still. Then he peed, or let go I guess would be more accurate. I moved him off the bed in a towel I grabbed. He was so heavy. I had planned to go to St John’s for the weekend, leaving on Wednesday, but I decided to stay back an extra day, in part because of the snow-storm. C is in Houston for the weekend and was gone. After making arrangements at the vet, I drove up to St John’s. It was good to be up there, both to be away from the house and to be in such an austere environment. I was struck by how empty the house was when I got home from leaving him at the vet. I had never experienced loss like that. It made me think about ghosts.

It has been a while since I wrote last, but it hasn’t felt like much time has passed. I kind of drifted off for a while, less aware of things. I think C and I both might have drifted off. I’ve spent most of my time passively accommodating the world, though without being very good about holding social time or returning phone calls. I was affected by the surgery and subsequent news about the cancers, however contained, in ways that haven’t made sense to me. I continued on, much as I have, but I also drifted off. I don’t always feel things right away, and sometimes my life make sense to me only when it’s too late to do much about it. Maybe that’s part of the overwhelming nostalgia I felt driving home in the rain, that part of me still feels like a spectator to my life. I’m sure it’s part of a healthy detachment when the going gets rough, to keep functioning day to day. Honestly I’ve not thought about it like this until I sat down to write it.

I’ve always been slow to become excited, to anticipate exciting events. But this spring I’ve almost stopped thinking ahead; I’ve felt wistful about the future like it has already passed me by. But that’s silly, or at least a temporary state, and the rain seemed to wake me out of it.

I’m between surgeries at the moment, between taking out the left and right kidneys. While now isn’t exactly in the middle, I do feel like the past one has just faded while the next one is just coming into view. I’ve said many times and believe that the surgery was much much less painful and less uncomfortable than I was lead to believe. It was tough to be housebound in the heart of a dreadful winter, but it was a relaxing time overall. I returned to work two weeks after surgery, which was my goal and a full week before I was told to go back. It was, in hindsight, a bit overeager, but nothing serious. I was mostly getting restless sitting around my house.

Since then C and I have mostly laid pretty low, the biggest health news is that I’ve been making weekly treks to the dermatologist to get hundreds of little warts zapped off my back – that’s been a bit rough. Otherwise we’ve been working, eating and playing a lot of Mario brothers. Today it’ll be a mix of paper writing and yard work – it’s basically a perfect day outside. Thanks for reading!

The Recovery

The evening of the surgery, after dozing for a bit, I made my first walk. At this point the epidural was working better (more information on epidurals here), or I was still feeling the anesthesia from surgery, but either way I felt just fine making my loop around the unit.

Making the journey with my nurse Randy

My crowded 'Care Board'

The next two days were a lot of lying around, waiting to eat real food. I was on clear liquids only until I was able to fart (a hilarious benchmark) which would demonstrate that my bowels had woken up from the anesthesia. This took about two days, though when they did wake up my gut was pretty rumbly, and many of my walks were to and from the bathroom.

This in itself wasn’t so bad, I could navigate in and out of bed without too much difficulty. I was however, hooked up to a number of devices that had to be dealt with before I could go anywhere. I was wearing air compressor leg thingies that squeezed my calves every few minute or so to prevent clotting, I had two lines from the IV pole (IV line and the epidural) and that thing they put on your finger to determine your blood oxygen level which alarmed like hell when I took it off. And a Foley catheter for good measure. I would call the nurse who would detach me from my baggage and help me into the bathroom.

On Thursday, the day after the surgery, the epidural stopped working again. The epidural runs numbing drugs (good ones) into my back along my spine, numbing the area enervated by that part of the spine. If the epidural is misplaced or moves, a different area is numbed. In my case, the area around the surgery site wasn’t numbed at all (they test this by putting ice on it, the colder the less numb), but my right leg was offline. I was pretty uncomfortable, but I had just had surgery. Wasn’t I supposed to be uncomfortable? People would ask me to rate my pain on a scale from one to ten. This made no sense to me – at best, a ten scale was a necessary invention for a totally subjective experience. What is a ten on the pain scale? Stubbing my toe feels like a ten, but that doesn’t mean I limp to my morphine cabinet. Also, it’s not hard to deduce that a higher number means more pain meds. Anyway – the pain was definitely there, somewhere on the pain scale, and my nurse called the epidural people to fix it. The anesthesiologists decided they would replace the epidural with a new one.

I was on the fence about this – I didn’t know that replacing the epidural would do anything; for all I knew it was working perfectly. And I knew that moving was painful, and lying still was less painful. But we went ahead with it and I was awfully glad we did. The wheeled me down to the surgery area and we set up in a big room in an unoccupied area of the basement. My Mom was visiting at the time and waited outside. They pulled a bunch of tape off my back which had been holding the line in place and had me sit on the edge of the bed and slump forward, rounding my shoulders, ‘opening’ my back in a way. The doc felt my shoulder blades and hip bone and oriented himself around my ribs and spine – he would press his finger on the side of my spine and hold it there, then another spot. He found his place.  ‘You’re going to feel a pinch and a burn’ – this was the lidocaine and always the worst part. I felt it, some shuffling, and something dripped down my back. He asked me to be as still as possible, more shuffling, and a lot of taping, and it was done.

I laid back on the bed. The doc then pushed some drugs through the epidural line to see how it was working. Within about 2 minutes I could feel nothing from my chest to my hips. No pain. Zero. This apparently is how it is supposed to work. This well placed epidural made the next two days pretty comfortable.

A lot of the stay was like many other hospital stays – lots of Netflix (I binged the new Sherlock series, which was awesome), lots of C visits, and lots of visits from other folks. I had a small crowd Thursday evening after they had replaced the epidural. 

Nicole, who brought some fabulous recovery food and Paul, who was happy to be there

Dad and Bruce, you can see the box for the leg thingies at the end of the bed

What I looked like most of the time - though not always so smiley

Dr Hall, my kidney doc had stopped by Thursday to say that the tumor they had taken out did in fact have renal cell carcinoma in it, though it looked well contained. Friday morning I got a bit of a jolt with some more bad news. My surgeon (Urologist Dr Heller who I like a lot), stopped by to say that in addition to the carcinoma, they found another cancer – type 2 papillary renal cell cancer, which is apparently ‘rare,’ like everything else that has happened. This one wasn’t picked up with the scans and was just starting to develop. Unfortunately this type of kidney cancer is bi-lateral, which means it is likely developing in the remaining kidney (though not the transplanted one). He said the other one would have to come out within the year.

The news hit me a bit that morning when it felt like the epidural was AGAIN not working well, and I hadn’t really eaten or slept in several days. After a nap and some food I was feeling more settled about it. It became the next thing to do, and I was beginning to figure when I should do it.

Given how my recovery has gone so far (I was off meds on Sunday and walking at the gym Tuesday), I’m less anxious about the next surgery. I can wrap my head around it – I know that it will pass. There were a number of rough moments, including Saturday night when I came home. My gut had been acting up a lot, and I was eating a deliciously hearty soup that was not helping things. I took a pepto chewable and spent the next two hours doubled over, feeling like I had swallowed a desiccant pack. I could feel this thing in my stomach and it felt awful. We talked about going back in, and ultimately called C’s dad, an ER doc, who helped us relax a bit. When it started to subside, I was finally able to breathe and had a good cry for everything that had happened in the past few months. For the record, here’s a picture of me blowing my nose into a towel. 

 

The long view of recovery from surgery can be similar to the recovery of anything else. When in the throes of some malaise it can be hard to remember what being healthy/happy/in-shape was like. Like imagining a hot summer day in January, or picturing being able to breathe through your nose can be hard when you have a cold. Will I ever be rid of this? Of course I will. But my struggle is always to maintain that perspective, not to resist whatever I am going through (a sore side, not being able to cough well, etc). When the load gets lighter I am reminded that recovery is a transition, not a stable state. And I remember that not two weeks ago I was sweating away on an elliptical, where I'll likely be two weeks from now. 

Overall it has been a surprisingly smooth process. I’m home now, very comfortable, eating well and playing video games. I ordered Call of Duty and have been trying to make sense of it. C is back at work. She worked from home the last two days to help me get settled, which involved cooking and attending to me, in addition to running the house - as always I would have a hell of a time without her. I can cough comfortably now and have a healthy reading list. Here’s a good summary of what I’m up to:

Thanks for reading!

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!