Repair and Maintenance: Part 2

Part 2:

I had enough sulking. I wasn't going to die from cancer. I had surgery scheduled, and it was going to be weeks before life was “normal” again. It was time to see what cards I had to play, and to play them.

I wasn't going to accept being trapped. If crutches were my new form of mobility, I was going to become mobile. I started cautiously. I had no idea if this was feasible, or just insane. The terrain in Frostburg is far from flat, and I wanted miles. I didn't even know if I could crutch up the huge 400 vertical ft hill in my neighborhood. The first day I went to the bottom of my street and back: ½ mile. The next day I did 1.5 miles. Then 2 miles. I could do this.

I was going to take calculated risks. It was too long to live in a bubble, but I didn't want to be pigheaded either. Being reckless had a high cost, after all, I'm fond of my hip bone and there wasn't much left of it in that spot!

I was going to take everyday risks. Going into my basement to do jewelry (which I actually didn't make any jewelry, but I made sure I -could-). Weeding the garden, I managed to use an oscillating hoe and hop on one foot to weed the entire garden every few days. One day early on I was actually so frustrated I cut my entire 1 acre yard with a one handed scythe while hopping on one foot. My life was not going to go “on hold”, I would adapt, but not stop.

I love problem solving, and this was one big goddamned problem.

I prioritized “low risk” activities over high risk ones. I relearned website design. I learned about dorky computer things. I don't really “love” those activities, but I could tolerate them. I passed the time, not by wasting it, but by optimizing it for the tools I could use.

The time did pass. Fast actually, although I still wish it went faster. As it got closer what surgery actually was started to dawn on me. “Fix it, just fucking fix it” were my thoughts for so long that I didn't immediately comprehend what that fix was. I'm a pretty healthy fella, and I've certainly never been cut open and had another person rearrange my internal parts. I wasn't really comfortable with this. I've always been slightly scared of needles, they are far from my most favorite of objects in this universe. It dawned on me that a needle was actually not the most terrifying object I was going to face; a scalpel was much scarier, and until now, I never had to fathom one being anywhere near me. I was not okay with this, but if I wanted to walk again, I was going to get over it.

It didn't hurt. So many times I would forget. I would forget that there was something wrong. Drift off to think about the bike ride I could be on, or where I felt like walking Oy, then I'd open my eyes and see my crutches and think “fuck”, while hoping this was some sort of trick, a mistake—any minute I would get a phone call saying, “oh, that wasn't an x-ray of your leg, you're fine”. I would blink and the crutches would be gone and I would look at Oy and go, “lets walk”. It didn't hurt, I couldn't see it. I kept hoping it would just go away, disappear into the abyss where it came from.

I waited, and waited. July 3 was coming, but so goddamned slowly. Finally a week before, the pre op.

A 6 inch cut. A fucking 6 inch cut through my flesh and muscle to scoop out the “stuff”, then a bone graft/metal plate, that's what they were going to do.

Even after the surgery, within 2 years there was up to a 20% recurrence rate, which I was not excited about. A recurrence meant another surgery. Up to 3 surgeries could be needed.

Cancer was still not 100% off the table. 95% chance that this was benign, but the pathology report pretty much said the exact composition was strange given my age—it was typical (and even normal) for what would be found in someone 15-25, not a 31 year old. They could either do months of biopsy samples, or go in, take it out and test it on the spot. If it was fine, they would continue with the surgery. If it was cancer they would close me up, and come up with plan “b” which would require me losing part of or all of my hip in another surgery. I wouldn't know until I woke up. The thought of waking up from the surgery to have the Dr. tell me that news was almost unbearable. I was holding on so far, a little pushed and worn, but holding on—if I woke up to that news i'd lose it, I knew it, and that in itself terrified me. To see the horizon of how much shit I could handle scared me. The idea of going through with this surgery only to have to do more nearly brought me to tears. I was terrified in a way I had never been before. I was so fucking helpless.

Prior to this experience I think I had never truly known fear. I had known the trivial lookalikes. I was scared, really really really fucking scared.

It is one thing to “believe in yourself”, you know, overcome those mental barriers that the world puts in front of you. It is quite another thing to believe in your subconscious self, to believe that after being cut open your body knows what to do, can heal itself, and overall keep you alive while sustaining major damage.

The night before the surgery I was terrified. I might've actually hugged Oy for over 3 hours. I told him he better not let anything go wrong, as if he had that power.

The morning of I hopped in my parents car and went off to Morgantown.

I had never been in a surgery waiting room, the screens showing the patient numbers and their status reminded me of a mechanic shop with a fancy status display. I felt like I was going into the “shop”. The surgeons all came into the waiting room after the surgery and gave anxious families the news. I only saw good news. This vision of “bad news” coming to my parents who were waiting horrified me.

I was called to go into prep, went back and got ready. The last thing I remember was laying on a solid table in the operating room, and the surgeon saying, “you won't remember any of this”.

I woke up muttering, “ouch, ouch, ouch”. The nurse said, “don't you worry, i'll take care of that”. She did.

I insisted “the biopsy, what were the results?”, “how did the surgery go?”, “am I okay?”. The woman said, “I don't have any of the info”, then increased my drugs.

Finally I heard no cancer. Everything went well and as planned.

I was “moved” onto a hospital bed in an inpatient room. I saw my parents and my friend who came to see me. I cried. I simply fucking cried. As someone who experienced it from the patient side, if you ever have a friend having surgery, go see them when they are done. It matters.

I'll leave out the details of that night. The people in the room with me were worse than reality TV obnoxious, and I personally did not enjoy most of my scheduled activities.

In the morning the physical therapist came to see me. A young girl, mid twenties. She smiled at me, gave me a pair of hospital pants and said, “put these on, we are going to go for a short stroll on your crutches”.

Twenty minutes later when I still couldn't get my right leg in, she helped. They were not kidding when they warned me about what happens when muscle is cut. The entirety of my leg pretty much went straight and stiff.

The therapist laughed and said, “Know how that really hurts when you even bend it a tiny bit? Well, you're going to have to get through that, and keep bending it, all the time, until it no longer hurts.”

I hobbled down the hallway with her for a few feet and then back to my bed. Just the vibration from using crutches hurt, and I was heavily drugged. I got back into bed and they said, “ok, we can work on sending you home—you'll be out about noon”.

They wheeled me to the front where I got into my parents car. It took a long time to get in, it was really all I could do to bend me knee enough to fit it inside the door. Those muscles were not interested in moving.

I closed my eyes and just about woke up in Delaware at my parents house (I got out a few times but really I was in a full drug haze).

The first few days, I slept, ate, slept.

I was a jerk, I read somewhere that berries help heal wounds fastest and I bugged my parents for endless supplies of organic blueberries and strawberries. My parents are amazing and got them for me. That kale, broccoli, organic chicken and eggs were just about all I would eat. OJ, almond milk and water is all I would drink—no useless calories were going in.

By day 3 I was off of the heavy pain drugs. The haze cleared. By day 4 I was really up and moving, almost as good as pre surgery. By day 6 the wound was healed (or the surface at least), and day 8 after surgery my parents brought me back to Frostburg, I was ready to go.

My mind is still blown by how fast it seems to be healing. I'm not done yet. It could be 6 weeks or more until the bone is healed enough to hold weight again, but this is the upside of the experience I hope. I'm ready for a break in the universes choice of “surprises”, maybe it could switch into “baked goods” mode.

This experience really made me appreciate my friends and family. My friends who went to Dr's apts with me, brought me food, groceries, cookies. My friends who have been helping with my grass, or watching Oy during the times I couldn't. My friends who offered moral support or offered to help, even though I said no often, I really appreciated the gesture (I'm really stubborn and independent, sorry!). My family who stood by me this entire time ready to step in and help at any moment, and who took care of me when I couldn't take care of myself. Really, I love all of you—as much as I don't like asking for help, I could not have done this one alone. Thank you.

Repair and maintenance. Part 1.

I pinched a nerve, that is what I said to myself. I went for a walk mid February and my leg hurt a bit. My back, and my hip. I pinched a nerve, it was that simple. I would let it rest a few days, and never look back.

It didn't get better. I said, “screw it” and started walking again. Mid March, spring was coming, and a stupid pinched nerve wasn't going to stop me. I would fight through it. I walked. When it was warm, I biked. It hurt, but not enough to stop me.

Mid April, it still hurt. Weird, stuff usually heals. One day I was working on a piece of machinery and lifted it a few times. It weighed about 150#, not a huge deal. I hurt, bad. Could barely walk for a week. It was time to see a chiropractor about this stupid pinched nerve.

Went to 2 different ones. It was feeling better, healed or not, my mind said I was better. Fixed. I wasn't going on long walks, but I was biking. I was going to get better. Period. This nerve was going to heal!

I remember the day after one of the appointments, I felt great and was pondering a nice bike ride. I was sitting on a bench swing and the wood gave way on one of the supports. I fell 2 ft onto my hip. It should not have been a big deal. I laid there for probably 30 minutes, beyond pain. If I moved I was going to vomit. Finally, I decided it was time to stop being a wimp and walk inside, drink some water and move along.

It took 30 minutes to walk 50ft. I grabbed some water, my mp3 player, sat on the couch and digested the pain—let it run it's course so I could move on. This was a good day and this stupid pinched nerve was not going to ruin it. Screw chronic pain. I relaxed and resolved the bike ride would go as planned.

A simple 10 mile ride, no big deal. I went out. For perhaps the first time ever, I cut the ride short and only did 7 miles. It felt like someone was plucking the entire nerve running from my back to my foot every time I moved my leg. I got home and sat down, frustrated.

I thought to myself, “okay, take it easy a bit”. I did. That was late April. For the next 2 weeks, I barely walked, but I did bike. In total I biked over 300 miles this spring, all of that unknowingly on a broken hip. A hip bone that was so weak that back in February the simple act of walking on it had fractured it, but I didn't know that yet. I was fine; figuring out how to wade through chronic pain, but fine.

Chronic pain is an experience you cannot understand from observation, I had always thought you could. Watching and sympathizing with someone in chronic pain is not the same as enduring it. It de-saturates life. It complicates every action, every moment. You are not free, you are a prisoner inside your own body where pain is dolled out randomly but consistently. Some-times you have the illusion of freedom, of health, but it is a ruse which is cut short randomly—try living your life when you are not sure when or where your ability to function will be cut off, that is chronic pain.

Mid May when it still didn't feel right I decided I needed to try a different chiropractor, after all, why couldn't anyone fix this pinched nerve? I didn't get it. This time, on a “feeling” I went to a chiropractor that could also do x-rays.

I went down on a Monday morning, the chiropractor talked to me for about 40 minutes about how my hip was probably out of alignment and how we would fix it. Right before we started he said, “I always take x-rays just to be sure”, so we casually did an x-ray of my hip.

Immediately, he said, “You got a big problem—see that white area, that is where bone should be but isn't.” This was followed by, “You are going to need surgery and might have bone cancer”. “Don't jump, you don't have much bone left”.

An hour later I was waiting for a CT scan. Cancer?! And where the hell did my bone go?! You know you are having a bad day when the news that you only need major hip surgery was in fact the best possible news you were going to get. I waited about 2 hours for the radiologist to read the scan. His view: “See an orthopedic doctor immediately. Walking might break the bone”.

I was amazingly fortunate and 3 days later was in an orthopedic surgeons office. The bone was clearly broken in a few places. There was a tumor in my hip bone, and it had destroyed an awful lot of the bone. I was going to need surgery, but not yet. Cancer was back on the table. I was told to be “careful”, no impacts, but walking was ok.

A few days later I was scheduled to be in an orthopedic oncologists office. A good friend went with me, and we had just finished a short stroll around Morgantown and had an amazing lunch. Walking barely hurt at all, I thought maybe things were even healing. I was actually certain that things were healing. My spirits were high, I was nervous but optimistic. I figured he'd go, “Yeh, no big deal. We'll get you fixed and out the door soon.”

“You have a big problem” were his first words when he walked through the door. “You don't have enough bone left to safely support your weight, no walking, no driving, no pressure on that leg at all, or else you will break it”. He went on to say, “60% chance that is not cancer, but you will need a biopsy and we will go from there.”

I went home shocked to the entire core of my being. 40% chance I had cancer. No walking, no driving, no independence.

Two days later I got a call scheduling the biopsy. They were going to jab a needle into my hip bone while I was in a CT scan. I hate needles. I wasn't thrilled about cancer either, but I really, really hate needles.

Again, my friend went with me. We sat for hours waiting (hospitals seem to run a few hours late all the time). I am rarely genuinely scared, but this was one of those times I was. They were going to jab a needle through my hip bone into this tumor, and then tell me if I had cancer. No part of that was pleasant sounding.

While we were waiting there was a child in the hallway crying, “I want to go home, I want to go home.” I wanted to go over to him, sit on the floor and scream with him. I wanted to go home. In my entire life, there may never have been a time I wanted to go home more than that moment.

They finally called me back to get prepped. I didn't faint when they put the iv in, but I hated it. When they finally said they were going to take me to the operating room I was in full resigned terror; they were going to knock me out, then do their thing—hopefully i'd wake up.

I did wake up, in the middle of the biopsy. I screamed, “I'm awake, please, please, knock me back out”. I was strapped down. My leg was numbed with local anesthesia, but I felt what I thought was a jackhammer hitting my leg. “Crack”, “Crack”, I only heard it a few times before I went back into unconsciousness.

I waited. The first few days I didn't think about it. The results take time. By day 7 I though I was going to go crazy. It's like living in a limbo where you have no idea what reality you are going to be released into. The possibilities for this ranged from benign to certain death.

Mid morning on day 7 I got the call: benign, but surgery was needed. A thousand pounds evaporated off of my shoulders. I was still not okay, but it wasn't cancer. Everything else was annoying, a horrible inconvenience, but life would go on.

On a side note: I have a new found respect for people with or who have had cancer, not that I didn't greatly respect them before. But, having experienced seven days of not even having it, it's stunning how fast the facade of mental strength you think you have can crumble when something out of your control and potentially deadly comes into your life. In the face of something like that we are so human, so mortal and so fragile that the terror of how vulnerable you really are can sink in and completely undermine whatever “strength” and “resolve” you built your life on.

Surgery was scheduled for 3 weeks later... 21 more days before I even started to recover. Unable to drive, work, or even walk. Fuck—this was going to be hard.