Monday, May 16th we had an appointment at Siteman Cancer Center in St. Louis, MO. We had to be there at 7:30 AM for lab work; 8:00 AM for a PET-CT scan; 10:30 AM to see the doctor; 11:30 AM a Muga scan; 2:30 PM appointment for respiratory testing, and at 3:00 PM fun with chest x-rays and EKGs. It was going to be a long fucking day. I had to work the day before, so after getting off a twelve hour shift at 7:00 PM on Sunday, I roofied myself, we ate and went to bed later than we had planned at about 10:00 PM. The alarm went off Monday morning at 2:30 AM and we needed to be on the road to St. Louis by 3:30 AM.
Everything was mainly uneventful, besides the constant shitty roads and claims of road construction. I saw no actual evidence of repairs going on in most locations so I’m still skeptical as the the claim of construction, despite the signs. Illinois must be a breeding ground for fluorescent orange and white construction barrels with flashers because it’s obviously spawning season by the sheer number of barrels that lined the roads. Several long stretches of between 15 to 20 miles of the barrels on both sides of the roadway were not uncommon, or perhaps it was all part of a complex construction zone barrel mating ritual, of which I am not privy to their secrets.
Once we left 72 and got on 55 it only seemed to get worse. Near the Granite City exit the road was backed up for a large stretch due to one narrow lane being open. It seemed to be backed up for at least 1000 miles, despite the early hour of the day. And regardless of the threats of fines, everyone drove at least 30 mph under the construction zone speed limit. It got better, briefly. Once we got to 60 the traffic came to a practical standstill. It was backed up from Missouri all the way across the bridge and was at least approximately over 9000 miles long into Illinois. An accident had pretty much put a halt on everyone trying to actually get somewhere. Like appointments with oncologists and lab techs and nuclear medicine peoples. Which means we were fucked. Eventually we were able to slip off on one of the faster moving ramps, though I did see several snails and turtles pass us before we were unsnarled in that nasty, multiple armed traffic beast and made our way to where we were supposed to be much, much earlier. We were only a half hour or so late for the lab. This should have been a premonition for the rest of the day. Because if there truly was a such thing as luck, she’s a fucking bitch.
We arrived even later in Nuclear medicine where @RelUnrelated was supposed to be having a PET-CT scan. Once he was finally taken back to be prepped I noticed the tech come back out and request some other papers. The orders for the Muga scan that was supposed to be done at 12:30 PM. Apparently the person in scheduling didn’t quite realize that you cannot do a Muga scan after a PET-CT scan. The PET-CT scan is a little more radioactive than the Muga scan. So they had to do the Muga scan first. By the time that was done, it was a half hour after the appointment with Dr. Dipersio. And I was stuck in the waiting room of doom. There had been a parade of very bizarre people the entire 3 or so hours I sat in there, waiting, probably quite impatiently. First it was the pair in the back corner of the room mumbling to each other in Russian or some other Slavic language. I had no idea what they were saying, but it was the most interesting thing going on at the time. They left and then in came 11 people. In addition to the person who was actually getting a scan. Yes. It took 11 people to go with this person. All 11 then proceeded to take up most of the small waiting room by sprawling everywhere and sleeping. Personally, I thought that was pretty fucking rude. After their snoring posse left, in came the hillbillies. Now these hillbillies weren’t all together. There were several different groups of them. And one of them had bathed in some disgusting baby powder perfume. And sat in the little bench that had it’s back up against the one I was sitting in. I choked and coughed and ignored it, despite the fucking asshole of a man that was with the baby powder perfume bomber kept slamming his fat ass against the chair and slamming me forward. Come on fuckers. You are rude as shit. And I can almost diagnose how you got that cancer. I bet it was from the fucking chemical weapons depot that you call a body. I was starting to get cranky and that wasn’t going to bode well if I had to continue to stay in that situation. I did get up briefly for a respite and walked around a bit, returning after getting some fresh air. I still had a sore throat from that shit the next day. That shit should be controlled under the Geneva Convention or something.
Anyway, it was almost 2:00 PM by the time we actually saw a doctor. He was an intern that we had never met before and didn’t, to me at least, seem all that bright. He seemed a little confused by the word Tuesday. Like he didn’t know what it was. He also seemed to think that Monday was Thursday and the next day would be Friday. Perhaps they need to ease up on the interns and give them a little more time away from the job. He didn’t seem to know much about why @RelUnrelated was actually there, except that maybe, just maybe he had cancer of some sort. Or something. I was getting very irate by this time. Neither of us had eaten since the night prior due to the fact that you can’t eat before a PET-CT scan and we had been waiting for fucking hours to get an actual break so we could get a chance to get some food. Oh, and we hadn’t gotten enough sleep. I know I hadn’t. It was my long week at work last week. I get rather cranky by Sunday night on my long week. Anyone who puts in 60 hours in a week would. The intern left and returned after awhile to see if the results of the scan were ready. Of course they weren’t, would we wait? We actually just asked if we could come back after the respiratory test, hoping that we would actually make it to one of the appointments on time. Hooray! We did! We got the prize of more fucking waiting. I was subjected to listening to the desk girls talk about vacation trips. How exciting.
We finished that at last and then proceeded to stand in line at the desk to tell them that we had returned for a good twenty minutes. Because, I’m not sure exactly, but the guy who was first in line was dopey. And trying to make jokes instead of fucking the woman’s questions. I wanted to slap him. I really did. The whole lack of sleep, food and high levels of annoyance thing was going on there. We finally told them, and then finally got called into the back again for… more waiting in an empty room. When the door opened this time it wasn’t just the confused intern, but the actual Doc this time.
The ICE chemotherapy really had no effect on the cancer. The shrinkage was minimal at best. He wanted to try one more single dose of another type of Gemox chemotherapy back at our home cancer center and then report back for more fucking tests in 4 weeks.
He also said that with the cancer in remission, the cure rate was 80%. Which is great. However, @RelUnrelated isn’t in remission. Where he’s at now, the cure rate after transplants is 40%. I’m not sure how I feel about this.
It’s almost a year to the day that @RelUnrelated what formally diagnosed with Hodgkin lymphoma. It’s not been easy. Dealing with a beast like cancer isn’t. @RelUnrelated has done very well, considering that he does indeed have cancer. He also lost his job at the end of January, leaving us hanging more so in a black hole of being able to pay our bills and eating. It’s been a shit year to be quite honest. I’m still angry as well.
Angry because we weren’t able to have anyone take his illness seriously earlier than we did. Angry that the doctors in the clinic and the ER at one of the hospitals in town just threw antibiotics at him because it was the easy thing to do. Would we be having better results had the doctors in October, November, December, January actually given a shit and looked at the whole of his symptoms and taken some blood for bloodwork like the second hospital in town did in May? The second hospital ER took it seriously. They took blood. They took lots of it. 16 large vials and bottles of blood. They gave him two units of blood that day and admitted him, not that he wanted them to. He wanted to put it off until Monday. He’s stubborn like that.
Our awesome oncologist was on call that day and she came and saw him that night. Even before we had results she was honest about what she thought was going on. And she was correct. He went in on a Saturday after I gave up and made him. I wasn’t going to argue with him. And he did it. I felt bad for doing it at the time, but I’m glad I did, even if I was a fucking bitch about it. Monday he had the biopsy. We had results on the 19th. It was not an easy four or five days at all. Thankfully, I had my awesome step-daughter and her boyfriend here with me to help out. They didn’t have to do anything but be there. That’s what we both needed then.
On May 20, 2010 he had his first round of ABVD chemotherapy. By the next morning, the large mass on the left side of his neck had almost vanished. With the mass vanishing, so did the vomiting, nausea, soaking sweats and high fevers. Overnight. I don’t care what people have to say about how poisonous chemotherapy is. Fuck you and live that 10 months we did before the chemo. Then talk about it.
@RelUnrelated hasn’t had any bad reactions to any of the chemotherapy, either the ABVD or ICE that he’s gone through since May of last year. We’ll see how he does with the Gemox and the BEAM go. I’m certain if any of it is going to be hard, it’s going to be the BEAM. Which is what they use to kill everything before the transplants. He’ll be in the hospital during that time and they’ll be able to help him with what I can’t. It’s not going to be easy. I know it’s not. I’m glad that quite a bit of it has been so far. Despite the fact that it’s going to be hard, we’re still going to do it. I trust the doctors and nurses that have helped us through this whole process. And this isn’t a cure all end all. If there’s no remission before the transplants there’s that nasty 40%. Fine. 40% is still better than 0%. And if you don’t try, you fail. I’d rather not lose this battle. I don’t want to think about losing it at all.
It was 8:00 PM by the time we got home. It was almost midnight by the time we actually got into bed. And our local oncologist’s officecalled at 10 after 8 the next morning with the appointments for the Gemox chemotherapy next week and the week after. Hopefully this will go as well as the others and slay that stubborn fucking cancer that doesn’t seem to want to go away. I’d like to see those persistent fuckers die. We’ll all see in about 4 weeks.
