Ever had one of those days that started great, then descended into hell?
I am writing this to you a few hours after returning home from a hospital stay of 4 days that still has my brain deeply troubled. Or is it the drugs?
It all started so innocently. Thursday was great. My white blood cells had come back to Tallahassee and our reunion was delightful. No problems. Provenge, treatment one, was complete. I was on top of the world.
Brace yourself. The radio is about to crackle with a message:
Houston, we have a problem.
Later that afternoon I noticed my neck was a bit sore. A little hard to turn. Having just had my chest catheter put in a week earlier, I wrote it off to sleeping on it wrong while everything was still healing up. Later, I noticed feeling a little tingly and weird, but chalked that up to the side effects I was expecting from Provenge.
Going to bed, I noticed slight redness and hotness where the tubing in my newly minted catheter went up to my neck. I decided I would call the doctor in the morning if no better. A couple of hours later, I awoke feeling nauseous, cold (teeth chattering) and with my neck an even brighter shade of red. I tried to tough it out (being a guy), but it turned into the night from living hell.
When I got to the doctor the next day, I promptly threw up in his bathroom and, upon getting my vitals, it was discovered that my blood pressure was dangerously low. Next thing I remember, we were in the ER and I was in the fast lane. Lots of people in white coats poking at me, talking about me, hooking things up to me and rifling through my wallet looking for my insurance card.
Next stop was my own private room where someone wheeled in a 55 gallon drum of antibiotics and stuck more needles into me, and attaching me to more medical devices (nice technology at my hospital, I must say. I was very impressed). I went to sleep with things dangling all over me and machines beeping and clicking in my ears. And drugs. Lots and lots of drugs.
Things were hazy the next day, but I remember doctors saying that they were culturing my blood. Already, though, they knew I had a dangerous infection in my newly placed “keep me alive with Provenge” chest catheter.
Later that afternoon a surgeon came in, and to my consternation, said he needed to give me a platelet transfusion (remember those little guys?) because mine were too low for the “operation.”
“Operation? I’m sorry? What operation?” I asked. “The one you are having first thing in the morning after your platelets come up,” he replied. “Why do I need an operation?” I continued my inquiry through my drug-induced haze. “Because we have to get everything out of you that is not original equipment – all ports, all catheters, everything.”
“You can’t do that,” I said. “I have stage IV cancer and I need these things to keep me alive.”
“Your cancer is a longer-term problem (I don’t think he knew my prognosis). We are going to forget about it for the moment in order to concentrate on keeping you alive right now.” My dazed mind snapped to attention and I went from being confused to scared.
The next morning there were complaints that my platelets had fallen again and that my blood pressure was still very low. Another transfusion was ordered, but there was no time.
They decided they would give it to me while they operated on me. That seemed rash to me and moved me from being scared to being terrified. If this kept up, I was going to die of, excuse me, an infection?
Being wheeled into the OR prep room, the place was deserted. “Where is everyone?” I inquired. “Oh, we don’t do surgery on Sundays,” was the reply. “Then why am I here?” I asked, still confused. “Because you’re an emergency. If you don’t have this operation today you could die.”
With those words ringing in my ears, I was put to sleep.
Waking up, I felt naked. Remember the glory of my port and (brand spanking new) catheter that I wrote to you about last time? The symmetry as they hung in and off of me, in service to my body? All gone. Everything cut out of me because infection apparently loves these things. They were sent off for testing as to what sort of bacteria they might be harboring.
It turned out to be some nasty strain of staph that got into me through my catheter’s surgical incision that caused me to go into sepsis and could have killed me if it had reached my heart valves. As my dear Catholic sister would say, “Holy Mother of God!” (with no offense to Mary).
That afternoon, though, the lights came back on. Boom. Upright and alive, I grabbed my IV pole with my ever-present bags of antibiotics and hit the road for a walk around the hospital. I look a little rough here, but hey, coming back from the dead can ruffle you up a bit.
BTW, I got in big trouble for taking me and the cool technology out for a stroll. Apparently, it is verboten. Putting it on Facebook was a bad idea, also. If this keeps up, soon there won’t be any hospitals or funeral homes that will ever take me in.
Right now? I’m home, unhooked from all medical tubing, taking oral antibiotics, with no hospital security guards chasing after me. Upright and alive. It feels good. Except for one little thing: every 8 hours I have to pull 4 inches of gauze out of a wound in my chest that looks like a 9mm bullet hole (I will spare you the photo unless you email me privately. And if you do, you’re a sicko).
Next I have to repack it with a really long wooden Q-tip. It helps if I imagine that I’m Jack Bauer, just shot while saving the world, and needing to do some self-surgery to patch myself up to finish the mission. I have a vivid imagination.
So time to rest up and relax a little, huh, Ed? Well, I’m afraid not. With this little setback, we are behind now on my summer magical medical tour. We leave for New Orleans tomorrow for another treatment there (that we are now late for) and then next week I’ve got a lot going on.
Yeah, you guessed it. Surgery is tentatively scheduled for that Friday (if I am absolutely clear of infection) to put in another chest catheter to begin another round of Provenge starting the following Monday.
I am a glutton for punishment, I think.
Thanks to those of you who picked up this saga on Facebook and supported and prayed for me. As always, you carried me through a real mess.
To the surgical team who gave up their Sunday morning to save my life, I will never cease to thank you all.
Once again, I learn the most important lesson of the universe: we cannot save ourselves. By the sacrifices of others (and Another), we have to be saved.
Saved – and grateful, yet again,