Jen and I spent all day Thursday at Johns Hopkins, bouncing from one appointment to another. First up was labwork at 9AM to see where my counts are. A giant, gentle nurse named Brandon accessed my port, took blood, and left the needle in because, surprise! a CT scan with contrast showed up on the schedule that morning. Next up was a consult with my surgeon, who is a lovely, funny man with a firm handshake. We got the briefing on how surgery would go, what to expect before during and after, and had a bunch of questions answered. Next we met with an ostomy specialist, who showed me a small bag that will most likely be my companion for a couple of months while I heal up from the procedure. While we were talking with that nurse, one of the attending surgeons popped his head back in and said they’d looked again at the 2014 CT scan and estimate that Lil’ Lumpy was about 10cm large at that point.
From there we went to another building to have the new CT scan done. I’m kind of a pro at CT scans these days, and this one was by far the fastest and most efficient one I’ve ever done. They had me in and out in about 20 minutes, and I got to do it in a donut that was decorated with all kinds of coral and tropical fish. Apparently the machine is shared with the pediatric cancer wing, so it’s the most cheerful CT machine in the hospital. I support the idea of decorating giant sterile beige machines with clownfish and eels. It makes the hot peeing-your-pants sensation of IV contrast a little more palatable.
We had 45 minutes for lunch before the next appointment, so we hustled to the fancy cafe and downed some food. Then we walked back over to talk with a doctor for the pre-op meeting, where she reviewed my whole medical history, talked about the medications I’ve been on, and reviewed the functional details of the surgery.
Finally, we talked with my chemo doctor, who reviewed my progress and quizzed me on how I’ve been through the second round. I should plug the entire staff of Johns Hopkins here because to a person they’ve all been helpful, patient, understanding and very generous with their time and knowledge. I picked the right team of people.
By the time we were done it was 4:30 and my brain was mush, so we hopped in the car and headed home. Parked out in front of the house was Mario with his brother, who came in and hung three sheets of drywall, adjusted the closet opening, and generally made some progress. Friends, three sheets of drywall can make a HUGE difference in your daily outlook.
I straight-up MURDERED a cheeseburger today for lunch. And fries.
Appetite is good.
I haven’t had a cup of coffee in a week now. Somewhere around Monday it stopped tasting good; I don’t know what happened. We make french press coffee from good beans, so it’s not like we’re swilling Folger’s or use a 20-year-old drip machine. I just couldn’t drink what was in my cup. Normally I’m a 16-oz kind of guy; a cup on the way to work and then enough to top off when I’m there. I’ve gone up to as much as 2 and a half cups for short durations in the last couple of years but then I don’t sleep. After suffering a massive migraine during the procedure to put in my port, I’ve been drinking half-caf, so when I went off the horse completely I didn’t wind up with headaches.
Coffee and I have had a long, lovely relationship since my junior year of high school, when I got a license and a car and was finally able to drive myself to school and work. In our podunk little town the 7-11 was the center of the social scene and the only good place to get a cup of coffee for cheap. (Later I learned of some delis in town that made far superior coffee, but this was 1987). I suddenly found that coffee was the ideal way to get myself moving in the morning and stay active enough to handle the pile of after-school activities I’d signed up for.
Along the way it took time to learn how to make good coffee on my own; somehow the knowledge I learned as a short-order cook didn’t extend to coffee. I brought a drip machine to college but never had the discipline to keep fresh milk handy, so I survived on the swill at the student center.
Later, as I did a lot of camping, I bought a percolator and that was my go-to brewing solution until it fell and the glass bulb cracked; the strong, gritty flavor of percolated coffee reminds me of windswept mornings at Assateague before hitting the beach. When Jen moved in with me she had a genius little one-cup drip machine that was the soul of simplicity; simply sticking a mug under the filter was all one needed. Eventually it died and we had to go to the french press, especially since Jen now drinks decaf and I don’t.
I wonder if I’ll want coffee again on the other side of this. Most foods still taste good (Jen did go and get me another burrito yesterday, BLESS HER HEART) but I’m off certain things until my body sorts out what’s going on.
Well, I felt good enough to get up out of bed and come downstairs to the couch, where I stayed for the whole day. Between the NFL games on today (mostly shitty) and Gears of War 4 (awesome) there’s been enough to distract me from a general sense that I might want to throw up at any given point.
The Xbox has been a great addition so far. It’s taken some getting used to, because I’ve only ever dealt with a first-generation console, where you stick a CD in it and it thinks for a minute and then you get a screen that says, “PLAY!” This Xbox has to spend 3 hours downloading the game to the console, another hour to update that game, and then it’s ready to play, after you’ve added a Microsoft email account and enter your passkey (which I can never seem to remember). Of course, playing games on the old console is like peering through a window smeared with peanut butter, while this new one is like being inside an IMAX movie, so my complaints are boring and ancient and YOU KIDS KEEP IT DOWN OUT THERE. Apparently I can hook our FIOS cable router through the Xbox and have it act as a media center, but I’d guess Microsoft would then keep a record of how many hours Finn has watched Teen Titans Go and that would ruin her chances for Presidency.
I was well enough to eat a decent breakfast, a normal-sized lunch, and a reasonable dinner, and with a few exceptions (we made everything as bland as possible) it all tasted OK. I’ve noticed that sweet foods, minus ice cream, aren’t appetizing at all, while savory stuff seems to get my mouth watering. I told Jen that if she could score me another one of those mediocre burritos and some guacamole, I’d probably cry with happiness. Maybe sometime this week–the restaurant is a bit out of the way.
Through an avenue I won’t divulge here, I got my hands on some medical marijuana in candied form. You can think whatever you like, but that shit works. I took it at about 10 this morning and it didn’t wear off until the late afternoon. What it did was mellow out my stomach, remove a lot of the nausea I had earlier in the morning, erase the various pains and aches I’ve developed, and provide an honest to god appetite. This coming week will be the true test of how it works, because the Neulasta bone soreness is going to kick in tomorrow, and all of the ill effects of the chemo+radiation are going to come crashing down on my head about Tuesday or so. But I’d rather have this than any of the opioids they were talking about in the hospital.
I didn’t do much of anything yesterday, other than lay in bed, watch YouTube videos (I’m so sick of YouTube videos), listen to podcasts, and nap. I just didn’t have the energy or the stomach to move around much, although I got up and ate as much as I could when the hunger hit me. Meanwhile our brother and sister-in-law came over and raked leaves off the front lawn with the girls, which was very appreciated.
My world view is very narrow right now. Please tell me there’s something good happening out there.
I’m so glad to have this week over with. Next week is going to suck in a way that can’t be measured with modern instruments, but at least I’ll be at home and not having to wake the family at 6AM to hump ourselves across town. I slept for a good portion of today’s infusion and that was a minor blessing. I’m so happy to be away from the stink of plastic and chemicals in that room, even if I can still smell it coming out of me.
I didn’t eat much today, as my stomach has been flip-flopping all over the place. Our friend Tony, who runs a barbecue food truck, was parked down the street and Jen went to talk with him. She came back with a big bag of dinner that smelled really good from up here so I went down and raided it. Pulled pork never tasted so good, even without sauce.
I’m thankful for all the good wishes and cheer people have brought this week, even if I can’t muster the energy to show it.
I didn’t post yesterday because I felt like total shit. Went to treatment, came home, crawled into bed, and didn’t get out. I was awake at midnight, 2, 4, and 6AM because my left kidney hurt really bad; only using the bathroom and laying on my side all night made things feel better. It was the kind of pain that felt like the leadup pain to kidney stones, but I think I may have doubled up on my mesna prescription by mistake. We’re getting that sorted out right now, because I’m 4 pills short this time. I don’t know what happened.
Today I felt better during treatment, helped in no small part by the last three episodes of Stranger Things, which made me weep with joy as it wrapped up. We made it home to find multiple packages on the porch, sent by my family: a shiny XBOX One S with a handful of games to get me through next week. Nothing says recovery like disemboweling hordes of Orcs in Middle Earth. THANK YOU, Mom, Dad, Ren, and Tony. I devoured half an order of Pho and started to set the console up before my guts exploded, and completed the process after everything calmed down. I’m looking forward to one final day of treatment and then a long break.
Coffee is off the menu until further notice. Glad I’ve been only drinking half-caf for the last month.
Today was the final day of radiation, and I’m pretty happy about that. Because I think it’s the reason my guts are so mad.
Not much else to report here.
I’m laying here in bed at 7:11 after having a little rice and rotisserie chicken brought by our neighbors (god bless them). I haven’t eaten much today other than a muffin in the morning and some pasta when we got back home. Something about the plasticky smell of the tubing in the hospital got up into my nose and shut my appetite off cold turkey. After eating a small bowl, all I wanted to do was go upstairs and lay down. This is due, in part, to the chemo but also due to a neurontin pill I took that will hopefully reduce some of the bottom system issues I spoke about yesterday. So I feel pretty foggy right now. I was also convinced to take an Immodium tablet to try and consolidate all deliveries to one dropoff after we saw the chemo doc overseeing my treatment and he looked me over. As I’ve said before, there’s no dignity with cancer. I’m checking that at the door every day.
Overall he’s happy with the way I’m tolerating this treatment and has a positive outlook on things. We like him a lot. We also love our radiologists, who have been attentive, explanatory, and helpful with their specialty and other stuff far outside of it: scheduling, general questions, and navigating the hospital system. I’ll miss them on Wednesday, because tomorrow is my last day on the big spinning table, I get to ring the bell, and we don’t have to go back there anymore.