So I could mumble on and on about what has happened already but there's been a lot and I think--hell, I hope--that there's lots to talk about moving forward and so I will try and just get scrolled forward to 'now.'
After we got enough of a diagnosis to send the first post's email, we were just buried in tests.
Echo-cardiogram: a sonogram of my heart, ostensibly to make sure it wasn't weak because chemo hurts the heart--along with everything else. The oddness here is that my name means something totally different to cardiologists and heart people. My great-uncle--or whatever you call people that far off in the branches of the family tree--Jeff Holter and his either father or son (sorry, not sure which way the lineage goes) Norman Holter invented the Holter Heart Monitor. So cardio people always say it right on the first try. But this cardio center actually had a room they referred to as Holter. So during our longish wait for my turn, we kept jumping up as the group behind the reception desk kept shouting to each other "Have you cleaned Holter?" "Seriously, Doug, get Holter washed out because I have to put an old lady in there in ten minutes!"
The Echo went a little weird because my running and training make my heart act different, so I had to hold my breath extra to try and stress it for the pictures, and the numbers came back a little low in the 'contracting to pump the next batch' category, but Dr R said that is what happens when your heart is extra strong--it is just hard to piss the heart off enough to really make it show you what it has. I like that: my heart's a fussy, yet muscular, diva.
Head MRI: lie inside a toothbrush travel-case for half an hour while the plastic machine around you gurgles and thrums like the kids who play paint buckets as drums on the subway platform. Then they give you a shot and you go back in for 15 more minutes. Head MRI came back clear, so another indicator that the cancer hasn't gone in places that would make everyone a lot sadder.
Live, Direct From Hell! This Is Spinal Tap!!!!
OK, I gotta say, I was looking forward to this one. One of my favorite bands, in all seriousness. And the Spinal Tap has the reputation, you know: Most Painful Thing Ever!
Kind of a let-down. Apparently the pain thing is from the old days. It never actually hurts: it is more just a destruction of your sense of self-protection. You have to curl up in a fetal ball like a scared kid or a dog under the coffee table in a thunderstorm, and then, when the needle pops! through the sheath and into the spinal fluid, you just know that the person behind you has all the power. It isn't pain, but if the person twitches, or you piss them off, he or she can invade you and ruin you in a way you've never thought about before. It is almost liberatingly terrifying, like learning to see a new color. A color that can flay your nerve endings, I guess.
Then, when the doctor was done--having taken a bunch of vials of fluid from an area I didn't think had that much to spare--and I shouted Hello Cleveland!!...Nothing. The guy had no idea what I was talking about. Zip. C'mon, you do Spinal Taps, fer chrissakes! Rent the dvd. Sheesh.
Tap came back clear, another positive indicator.
Then I get surgery to take a lymph node out and biopsy it, and to put in a Mediport. The surgeon who did my last hernia, Dr. P, does this as well, and it goes as well as the stealing of a hunk of your body and the insertion of an ipod into your chest can, I suppose. I didn't react well to the anesthesia--really impressive how a bunch of doctors and nurses don't even really stop their discussion of your procedure while you gently puke bright yellow whatever off to the right side of your mouth. They just sweep it away, replace the sheeting, and move on. But because of that I felt a bit more of the operation--not pain because there was local, but all the tugging and yanking that makes you realize that surgery is as much carpentry as science (not to take anything away from the craft, but at some level it is just a guy stuffing something that wasn't factory-installed into your body, so there's a good bit of elbow grease.) Imagine putting a new car radio into a 1991 Jetta one summer day, but you're the Jetta.
The Medi-port is, frankly, fascinating. I love stuff like this; I was a big fan of the The Way Things Work books. It looks like a tadpole with huge eyes, and it makes poisoning you a whole lot easier. It sits under my left clavicle, under a very obvious bump, and the 'eyes' of the tadpole are pierce-able bubbles of a tough plastic. A needle slides through the somewhat tough skin of my chest, and into the port's bubble, and then they can give me whatever they need to. The tail of the tadpole is a long tube that goes way down into my bloodstream, so the delivery is more efficient. The two eyes of the tadpole mean they can alternate which bubble they pierce and that means that I can use the port longer before infection-risk and over-use mean they need to replace or remove it or whatever. Cool stuff. Though when they were done my transfusion--the first time the port got used--they seemed to push the flushing/cleaning fluid into there way too fast. Guess I just have to assume they know what they are doing. Whenever I see someone pushing a syringe of shit that fast into someone I have flashes of James Bond films and the like where that's the way to kill somebody.
I have been transfused with platelets and two units of blood so far, and it seems to have gone well. The platelets made me less likely to bleed out, bruise, etc, and the transfusion did a huge bit to getting me some of my energy back. I felt a lot better after the first blood unit when the Tylenol was kicking in and the new blood was pumping. By the second unit my somewhat permanent headache was back, but I still felt so much better.
The morning before the transfusion was the so-far lowest moment. I was tired, scared, shaky, achy, and mainly just as weak as I've ever been. Tears, befuddlement, the works. Neela took it all like a caring rock--looking back to that morning, she amazes: just keeping enough forward momentum to get us to the Cancer Center, but absorbing my freak-out and lowness, taking it into herself, so that I could get past it and get there. A simple act of absorption and care that greased the gears enough to get me there and transfused, and then I felt so much better, and a little ashamed to have been so low so early on in this, and I felt the first twinges of the terror at how bad this could get.
But we got there an did what we had to do, and it was better when it was over. That's what I remember: that's what I make sure I remember.
I will try to get through the rest of the 'past' in the next post so we can go forward, and then I can really ramble. That's what I am looking forward to: mad ravings! Yeah!
