Surviving Steroid Withdrawal on the Summer Solstice

Take a good look at the photos above. Without these two, I never could have made it through this week -- Severe steroid withdrawal, round IV.

Much to the chagrin of Mum and Katie, I'm usually a "grit-your-teeth-and-bear-it" kind of a guy. I hate taking anything for pain, it just never seems right. In 6 months of chemo prior to this week I had used a single "as needed" bottle of liquid Tylenol, a fact I was rather proud of -- I really hate the idea of pain meds.

I knew coming off the steroids would be bad, I've done it before and I felt ready. I had no idea what was to come.

Before I begin this week's story of steroid withdrawal, I must pause and explain a back story: Katie just graduated from UW and began working at a full-time position for the first time in her life last week. She's always worked extraordinarily hard, but there certainly is a transition between going to school and getting up at 6:30am to complete the 8-5 Monday to Friday grind of a work week (especially when you're like me and never went to classes scheduled before noon at school).

On top of the difficult adjustment a normal young adult would have to make as they transition from college to the professional world, she has to deal with the tasks of caring for a severely stubborn boyfriend fighting leukemia. So, on a good, normal day she now gets up early, gets ready for work, helps me get ready for work, goes to work all day, helps set up our upcoming move during her lunch hour, finishes work, runs errands for me like going to the grocery store or pharmacy, and then comes right back home to help take care of me for the night.

And in return for all of this -- if she's lucky and I'm having a good day -- I'll cook her dinner -- Which she'll then likely need to clean up from because I'm too tired.

Now I'm a pretty darn good cook, but that somehow still doesn't seem like a very fair trade... and that's on a good week...

Back to this week...

Wednesday night the bone pain of steroid withdrawal started as expected and I actually took a dose of Tylenol at around 11:30pm -- if I've learned one thing it is that when I come off the drugs I need to sleep whenever I can and I thought this might help. When I went to bed the pain was around that of a persistent and nagging toothache in my hips and legs -- pretty typical of steroid withdrawal.

I then awoke in the middle of the night with intense pain in all of my bones and joints "Wow, time for more Tylenol" I thought to myself.

I got up, looked at my watch, and it was only 12:30am. It would be another 5 hours before I could take more Tylenol, and clearly it wasn't even going to begin to mask the pain.

After writhing in bed for about 20 minutes I decided I needed to try to let Katie sleep and retreated to the futon in a futile attempt to distract myself from the pain with television. I lay watching "Mad Men," a truly great show, but the pain left me entirely incapable of watching in any meaningful way. It felt as though all of the bones in my body were splitting and there was no position, no movement, that would make it cease.

Mercifully, I was finally able to get about an hour of sleep between 4am and 5am on the futon, but when I went back to bed at 5am was left writhing in pain keeping Katie awake. By this point all of my bones and joints constantly ached with a toothache-like pain that would not go away.

On top of the general steady, aching pain, every now and again I would feel as though someone were slowly and methodically breaking certain bones in my body leaving me unable to control my breathe, tears rolling down my face and shaking. I wanted so badly to put on a brave face and pretend that it didn't hurt so bad because I could see Katie suffering in my pain, but was left entirely without control.

Katie spent the morning with me trying to make me as comfortable as possible. "We just need to wait this out, I'll be okay," I kept telling her -- and I knew that it was true.

Steroid withdrawal and the pain associated with it is something that only time will fix. I may writhe in pain and tears may stream down my face, but it will pass. While I had rarely experienced such intense pain, I was still in very good spirits. Having gone through it before and knowing that it will get better put me in a much, much better psychological place than when I first went through steroid withdrawal.

So, after getting about 3 hours of sleep because of my writhing and groaning, after spending the morning comforting me, Katie headed into work and let Mum take over taking care of me -- a changing of the guards.

When I come off of steroids I am completely useless, these two do everything for me. They help me out of bed, they get my meds ready and measure them, they get me food and water and clean up after me, make my bed, help me get down stairs and into a car -- there are times when I literally can't do a darn thing for myself and they take over without complaint. This is on top of the many, many tasks (cleaning, disinfecting, laundry, errands, dishes...) they help me out with on a daily basis just so that I can preserve my energy to go to work when I'm healthy enough to make it into the office.

All of Thursday was spent in intense pain. In the morning we went to the clinic to have labs drawn because I was dreaming of heading north this weekend, but dealing with some bleeding issues and wanted to make sure my counts were high enough that if I were able to go that I wouldn't bleed to death on the shores of Lake Superior... While there we asked the nurse how best to deal with the pain. She said the worst should be over and it should only get better from here -- what a relief.

This turned out to be wrong...

When we got back from the clinic, try as I might, I could not distract myself from the pain. Tylenol did nothing. I could not sleep to escape the pain -- it was too intense. Working, reading books, listening to music, watching TV or movies all proved fruitless, the pain was simply too intense to get off my mind. I felt like I was in labor. I was in constant pain with pulses that would make my eyes tear and I'd groan and hyperventilate. My poor mother stuck it out with me all day, waiting on me hand and foot as I repeatedly made a dramatic scene of the pain I was in.

Katie came home and took a short nap and ate dinner as I took a shower. After the shower I lay in bed, pain unrelenting.

Around this time my sister, Kate, called and warned that intense storms were forecast for Mad-town. "They're saying there might be baseball-sized hail and tornadoes," she warned. I get excited about big storms -- I love them -- but I could have cared less.

My brain was entirely saturated with pain. It was all I could comprehend. In 48 hours I had slept just 3 and hadn't once been able to escape or distract myself from the bone and joint pain of steroid withdrawal. Laying in bed, wide awake I realized that I was on the verge of madness from the pain-- I was close to snapping and feared what would happen if I didn't find some sort of relief... All I could think about was finding an escape from the pain, the thought of relief was one of euphoria... Nothing else mattered... I went to talk to Katie to figure out what to do.

Katie called the on-call Doctor to see if he'd prescribe something to ease the pain or help me sleep. Storm clouds grew darker and darker outside as we waited for a call back -- me growing ever more crazy and restless by the minute. After a half hour, Katie called back.

"The on-call Dr. doesn't seem to be picking up his phone." the operator informed Katie.

Kind of defeats the purpose, doesn't it?

Finally he called back and said he would happily prescribe some Tylenol with Codeine which should help quickly. He just needed to figure out a 24 hour pharmacy that would fill the prescription. Unfortunately that pharmacy ended up being on the opposite end of town.

So, in the midst of a severe thunderstorm warning and tornado watch, Katie headed out in the middle of the night in torrential rains and lightning to cross town to fill the prescription the Dr. had called in for me. She returned in an intense storm and by midnight the codeine had taken its effect letting me get a couple hours of sleep and a bit of relief from the pain. The absence of pain was the most euphoric feeling after simmering in it for so long. Katie stayed by me the whole stormy night, catching a couple hours of fitful sleep on the floor next to me (I was sleeping on the couch). At 6:30am Friday morning she was back up getting ready to go to work, without complaint. She was a real lifesaver.

And for all of this, for a nearly sleepless, stressful week from hell -- I got up early to make her breakfast before work. Cinnamon roll french toast w/ fruit and cheesy eggs. It was good, but it hardly seems like a fair trade off...

And Mum got to clean it all up.

So, to wrap this up, don't worry or feel sorry for me and know that I'm doing well (I'm happy as a clam writing this post from a porch overlooking Lake Superior and while the pain hasn't completely gone away, it now feels as though I ran a marathon yesterday as opposed to being bludgeoned repeatedly with hammers...)

Do however take another long look at the photos of Mum and Katie above, and if you should see them around town -- be extra nice to them. They deserve it.

Take care,

Sam