So yesterday was pretty mellow. Harvesting doesn’t hurt, you just lay there, and with a laptop and a good wifi connection that was fine. Relaxing, really. Unfortunately I needed 6 million stem cells and got 5.65 million, so I had to come back today for another session (and another Neupogen shot). Only real bummer is now I won’t get these damned lines out of my neck until tomorrow at the earliest, although I’m hoping they can do it later today if the labs test my collection bag in time.
My labs came back this morning and there’s enough stem cells in my peripheral blood to start harvesting, so a’ harvestin’ we shall go.
Sorry, I got a whole 3 hours of sleep last night between the lower back pain from the Neupogen and having the catheter lines and dressing on my neck.
Wish me luck … I’m scheduled for four days of this but as soon as I have enough cells they get rid of the catheter and the shots so hopefully I get to sleep again.
Update: turns out I forgot to post this. It’s 2:30 pm, and I’m feeling good, actually. Just been kicking back all day in a hospital bed while the machine runs, and my nurse, Heather, is awesome. She even got me a Starbucks! I’m going to go above and beyond and do a few more hours on the machine than the requisite 5 in the hopes of getting done quicker — the minute we get all the cells needed for two transplants I can get this goddamn catheter out of my neck and stop with the Neupogen shots.
Machine behind me there is the apheresis machine that pulls my blood out, separates out the stem cells, and then puts the blood back in. You can’t really see it but I have two lines running into my neck on the far side that connect to the machine.
Sitting in the waiting room at the hospital to get my catheter line stuck in my neck. Already had labs done and my daily Neupogen shot … Had to double-up the Oxy last night just to get to sleep. The pain is lower back and hips this morning — walking and feeling like an old man.
I know I made the right decisions about having Amy and Ariana here, but having to go to appointments like this next one without Amy’s hand to hold is kind of tough on the soul. I don’t want Ari around here though and she can’t go to a lot of these anyhow. Amy found an indoor play place for her this morning and while I’m lonely, it makes me happy to know she’s going to be somewhere giggling instead of in a waiting room.
And I may be able to parlay this into an In-N-Out stop on the way home.
Talked to my mother yesterday … I didn’t even get into it here but my parents were in a head-on 50 mph collision on 285 several days ago when a propane truck heading the opposite direction decided to turn right in front of them and then even more inexplicably stopped. My dad fucked up his back but mom fractured both legs and will be hospitalized for quite a while. Her surgery went well thankfully, but they’ve definitely got her on the good stuff drug wise.
So yeah, as forewarned was possible the Neupogen shots are causing severe pain in my upper legs and hips. Thankfully Dr. M. prescribed me some just-in-case Oxycodone which has taken the edge off and got rid of the jaw pain, but legs are still driving me nuts. Grrrrrr.
Get my catheter lines in my neck tomorrow morning. Because what else could be more fun on a Thursday?
… shots in subcutaneous fat. Seriously. At least these weren’t in my stomach like the weekly chemotherapy shot of Velcade, but still. Two full syringes of Neupogen in your arm is a shitty breakfast.
So we’ve been here a little over a week now. I’ve had a bunch of meetings with planners, coordinators and doctors and had several tests done including an echocardiagram, an electrocardiagram, a full panoramic xray of my jaw, a full body skeletal survey (20ish xray shots), a host of lung tests, tons of labwork, etc. Beyond making sure I’m healthy enough to do the transplant, a lot of these tests are to find a baseline so that if something goes south they have a “normal” to compare things to.
All of that was a precursor to this week, where I start getting Neupogen shots to increase stem cell production and pop them out of my bone marrow for collection starting later this week.
I linked the Neupogen website in that last paragraph just for humor’s sake. Stock photos are one of those idiotic things in life I tend not to spend too much time on, but seriously — having spent almost half a year going to infusion centers I can sincerely tell you that NOBODY there has ever had that “Yay, chemotherapy!” face from the pictures on that website when I’ve been there.
So far things are OK, I guess. Although expensive I believe I made the right decision to rent this villa for a few months. It’s quiet here, and peaceful, and bright but not in an obnoxious way. Ariana seems to have adjusted, although I think she’d be happy in a shack as long as I could pull up the Bubble Guppies on Amazon Prime Video. The shopping is amazing in this area and everything’s very convenient. The weather is great too — it’s been so long since I lived in California that I forget what it’s like when it’s just perfect every day, but you can see why people come to similar climates during the winter.
I finally got my In-N-Out burger too, a double double. It was heavenly. I bought a commemorative t-shirt to remind me of how good it was, in fact. I forgot, however, half the secret menu stuff so I just ordered off the menu like a tourist. Ah well. I know that’s not exactly the first line item on the anti-cancer diet but my diet is super restrictive for 100 days after my transplant so I have to get in the bad stuff now. That’s my excuse, anyways. And if people continue to bitch after that I can bust out the BUT I HAVE CANCER card.
A little uncomfortable guilt never hurts when an In-N-Out burger is being questioned by health Nazis.
Mentally and emotionally … I’m OK. I mean I’m freaked out, but as I’ve mentioned before here when you’re out of choices the mental state doesn’t really matter, does it? I’m so young compared to everyone else here, and that’s been difficult. One doctor, an ENT guy I saw Monday morning, even said the dreaded “you’re too young for this” line. He was cool and we were having a good chat so I didn’t mind, but that constantly occurs to me here in the land of Where Wealthy White People Come to Die That Hate Florida.
I wonder what the elderly patients think, seeing me here. I would imagine a mix of empathy and thankfulness (that they didn’t get myeloma sooner). I feel empathy and jealousy (that I didn’t get myeloma much later), so that’s probably close.
People have been coming out of the woodwork in my life lately, and that’s been appreciated although difficult to deal with. As an introvert who’s only regular public interaction was either protected by the anonymity of writing or the expertise of being a professional (diving, portfolio management) this is a new sensation and experience and not one I feel like I know how to handle. Perhaps nobody does? I’m sure there’s a whole barrel of monkey’s worth of discussion there about how this is deeply rooted in some inability of mine to deal with people caring about me or similar.
Weird, the things you come up with and/or realize when you are just typing your thoughts.
I’m waiting while Amy gets ready to go, procrastinating fighting Ariana to get her clothed while she watches some edutainment garbage called Super Why, to go to Over Easy North. Found this place last week while trying to find a good place for breakfast and noticed it was on Triple D. As much as I hate the host of that show I have to admit he showcases some rocking places to eat, and today, with this Neupogen flowing through my arm like an undesired reality, I feel the need for some serious fucking breakfast.
It’s Thursday night, and taking a moment to get caught up here before dinner.
Had most of today and yesterday off after a few days of tests, re-tests, various meetings, etc. A buddy from Parker happened to be out here Tuesday for work so we went to get some sushi, which was nice, and last night a longtime friend of my wife was out here from Colorado Springs so she came over to the villa for dinner. I still need to hit In n’ Out but it’ll happen before I go into the hospital. And Mastros.
Ariana has slept well the last two nights — not so much the first 3, so that’s good. She seems to be teething a bit and that plus a new place was quite a bit for her to deal with. She’s still a lil’ crabby but hopefully will get back to normal soon. We all took a walk today — probably mentioned it but Amy found a place that rented us a crib, stroller and some toys for her, so we busted out the stroller and got some exercise in.
Had a class today with a 15-year nurse in the program about the transplant. No real news to me but was interesting. Hard to believe this is really happening. She went through all of the side effects and what to expect — sounds like the chemo is going to fuck me up pretty good and then the week or two without an immune system is supposed to suck. But they have wifi and an exercise bike sorta deal in my room, so whatever. A few weeks of hell for several years of remission is a small sacrifice.
The manager here at the Normandie cut me a deal on March, so we’re going to keep the villa for another month. That gives Amy some freedom to leave things here if she goes home and to stay if she wants, and takes the pressure off of having to find a place to stay for 2-4 weeks after I get out of the hospital in mid/late March.
Doing OK mentally and emotionally for the most part. As I get closer to the cell harvesting I feel a bit of walking to the gallows-ish though. And I miss Mischief.
In other random news one of my best friend’s mother died this week. It feels bad being out here with that having happened, impotent to do anything. And then I get a call today and my parents were in a head-on collision on 285 at 50 miles an hour — a propane truck turned right in front of them. My dad is bruised and my mother broke both her legs, has a compressed disk and is being monitored for internal bleeding due to the seat belt. Guessing that means they won’t be coming out when I’m in the hospital, which is a bummer.
Got in about 6 pm tonight … not a fun drive but not too terrible, and did 85-90 the whole way so it didn’t take as long as it could. The villa rocks, feels right. Amy had found a place online that rented us a crib and a bunch of toys for the month so while I unloaded the car Ariana was tooling around the carpeted garage in one of those Flintstone-type red and yellow plastic cars. She zonked out big-time after a tiny dinner — she didn’t sleep well last night and woke us up at 11:30 pm for an hour so neither did we.
Drive down was fine … we had snow all the way from Denver to Las Vegas, NM, but nothing too terrible. We stayed in Amy’s aunt’s place in Santa Fe for the night and then did the rest of the drive today. I drove the whole way, was just in the mood to floor it and zone out.
By the time we got unpacked and Ariana fed and tucked away it was too late to go get or cook dinner, so we snacked and said fuck it tonight when Maggiano’s failed to pick up the phone. Dicks. The temptation to make an In N’ Out run was almost too much but after a shower and with this nice big warm laptop on my lap I don’t even want to get out of this recliner to grab my glass of water.
Will update more this week.