Obviously, things were not getting better. So I spoke with the on-call oncology doc at Hopkins around 4am on Friday and told him that I needed to come in and figure things out. So there we were at 4am on a Friday, me on the phone with an oncologist, Emily drawing up sub plans for the day. This is our life.
We got to bed around 5. I expected a call at 8:30 or so – the time Jane usually gets into the outpatient clinic at Hopkins. But I was kind of hoping that call wouldn’t come. I needed the sleep. Apparently the people up at Hopkins thought the same thing, so they waited for me to page them around 10:30. Jane called me back and told me to come on in, so I showered and headed up to Baltimore.
I wasn’t in great shape – my headaches kicked in on the drive up to Baltimore and were about a “5” on the 1-10 scale by the time we got up there. But I wasn’t nauseous, and simply being stable enough to make it up to Baltimore was a substantial step. I got up there, did some bloodwork, got weighed up (I had dropped nearly 10 pounds), and headed upstairs to the treatment room. We quickly got some fluids started, I spoke with Dr. Ambinder (who introduced himself to Emily as “Dr. Jones” in an attempt to escape responsibility for breaking me like cancer never could) and the pages quickly went out.
As you know, I’m really, really involved in my own care, and I’m pretty persistent with people when I want something done. But I had no idea what the hell was going on while I sat in the Hopkins treatment room. This wasn’t because of a lack of communication, though. It was just that I had come in on a Friday afternoon looking for something done, and the people with the ability to help me immediately only had to stall for a few hours before they could go home for the weekend. I understood them.
That’s when we started discussing the possibility of admitting me. Which I hadn’t considered previously, but I was remarkably receptive to. Because I was in hell. I couldn’t function, and this had been going on for nearly three weeks. So I was really in a “do whatever you have to do” mindset. If that involved admitting me to the hospital, so be it.
The problem was that getting the chances of getting the procedure I needed – an epidural blood patch – before Monday were not looking good. And that would have meant a weekend in the hospital doing not much, then having the procedure on Monday, then hanging around until Tuesday for observation. That was fine, but certainly not ideal. I wouldn’t be in active pain, but I would be stuck in a hospital. Either way, not fun.
They were seconds from taking me up to my room when Dr. Kathuria saved the day. Really, a ton of people at Hopkins saved the day. I was rushed through the maze of the hospital after 5pm on a Friday down to the back door of the Interventional Neuroradiology department (quite literally the back door…I think we briefly traveled through supply tunnels underneath the hospital). Red tape was hacked to shreds, doctors, nurses and techs stayed late, and I finally got some relief.
I think this blood patch thing is just awesome. To explain, I shall use a graphic:
So when the original lumbar puncture was performed, a needle is stuck all the way into the subarachnoid space. That’s where the spinal fluid hangs out. Once the needle penetrates that space, the spinal fluid leaks out and is collected in a tube, and the chemo drugs can be injected into the same area. As you might guess, the needle must puncture the various membranes to reach the subarachnoid space. Sometimes, those puncture sites don’t heal very quickly. The result is a slow leak of spinal fluid. Since the spinal fluid also surrounds the brain, the constant leaking leads to constantly shifting pressure around the brain. The low pressure triggers headaches and everything else I’ve been dealing with over the past month.
The epidural blood patch fixes this problem by sealing the puncture sites from the spinal tap. To do this, they use the most valuable substance on earth: my blood.
The procedure is similar to the spinal tap, only its done while I’m in a CT machine. The CT machine allows the doctor to hit the right spot with the needle, which is important because the epidural space is only about 2 millimeters wide. So I lay on my stomach in the CT machine, and the doc cleans and numbs the injection site. He then takes a needle and inserts it into the epidural space – just outside the subarachnoid space – using the CT images for guidance. If he goes too deep, we’ve just compounded my problems. If he’s too shallow we’re not solving anything.
Once the needle is in the right spot, a nurse withdraws blood directly from of my arm, hand the syringe to the doctor, and the doc injects it right into my spinal column. I roll onto my back for a half hour, the blood clots, and voila! Punctures are sealed.
This procedure doesn’t “fix” the problem so much as it alleviates the symptoms. The subarachnoid space needs to seal itself – the blood won’t be useful forever. But it is quite effective, and the procedure went very well (meaning there was an even distribution of blood in the epidural space). Dr. Kathuria’s talent was quite obvious.
Of course, there’s the obvious question: Why didn’t I do this sooner? I guess for the same reason I didn’t start chemotherapy in June. I mean, hindsight is 20/20. Doctors didn’t expect that I would have these problems, and its extremely rare for patients to get better and then worse after a spinal tap. It’s also extremely rare to have the sort of reactions I did. So “YOU’RE SPECIAL LOL” responses aside, this wasn’t what anybody predicted would happen. Had I known back on March 25th that I would still be dealing with this crap two weeks later, of course I would have had this done. But I try to minimize the amount of “spinal interventions” in my life.
Following the procedure, I had to stay flat on my back to allow the blood to congeal. So I laid on a stretcher until a couple folks from the cancer center came to take me to my room. And away I went. Flat on my back, on a stretcher, being wheeled through a hospital about six months after “remission” was accomplished. Not what I expected, to say the least.