Someone posted this on a board between the men's and women's bathrooms at work. It's probably a joke, but I hope it's serious--it's so much funnier if it is.
In case my phone picture is too blurry, it says:
"As a result of last week's incident, and due to growing safety concerns, puppets will no longer be allowed in the break area or bathrooms.
Thank you for your cooperation."
So I have this whole long thing about my adventures in Oncology, but I can't seem to buckle down and actually write it. For the time being, I'll let you guys know that I'm doing ok; I think the Orencia is working. It's a little disconcerting because my doctor is out of the country for the rest of the month. So far so good, though. More later.
I don't know why I'm so freaked out about this, but I am. I guess because of the way it came about. Yes, I know I'm lucky to have a supportive husband, and insurance, and a good job, and all that. I really do know this. I'm still freaked out, which puts me in a cranky mood.
So, for the gory details. My infusion takes place tomorrow, over a couple of hours. Tonight, I'm supposed to take four times my usual prednisone dose; this will make it so I can't sleep, so I'm taking the day off tomorrow. Once at the hospital, they'll give me yet another dose of steroids, and then the medication itself, intravenously. This is the part that takes a couple of hours.
When I used to go in for Remicade, I'd bring my husband's laptop (I didn't have one of my own at the time) and watch a movie. My laptop right now is sort of huge, though, so I don't know if I'd be able to hold it long enough to watch anything. Also, I may be too exhausted; it wouldn't be too bad to just sleep through the whole thing.
I'm worried about having an allergic reaction. This is what happened with the Remicade; I was doing great on it, and then, out of nowhere, I had an allergic reaction--couldn't breathe. So that was that. If this happens again, there is, I think, one other alternative, and then we may be out of options again, until someone comes up with a new drug.
I want to be able to not have to carefully weigh the pros and cons of having a drink, because walking to the bathroom (not to mention sitting), is such terrible pain.
It seems stupid to have my husband come sit with me for hours just because I'm freaked out. I can't in good conscience ask him to just hang around and twiddle his thumbs for the whole day. Either this thing will work or it won't; either I'll have a reaction to it or I won't; there's nothing that his being there will change, I guess.
The drug itself is pretty scary--"it works by blocking the activity of T-cells". I suppose that's no scarier than anything else that screws with your immune system, but still, it's odd to have your doctor recommend this--my gut reaction was, "T-cells? Don't I, you know, need those? *flashbacks to Pedro going over his T-cell count in The Real World*" Of course, my last drug was TNF inhibitor--and I mean, why would you possibly need the stuff that fights tumors in your body.
Side effects are the usual: infections, increased cancer risk, etc etc.
I've spent long enough on this for now; we'll see how stuff goes tomorrow.
So, I have been avoiding the topic as much as I can, but it's arthritis time. I've been in a pretty bad flare for the past month-plus. I don't have the energy to go into detail about all of that--you can browse through the archives if you're curious as to what that's like.
I've also been waiting to get approved for a new treatment. First, my doctor's office took their sweet time to get the approval process going. Apparently there is one single person in the whole rheumatology operation at my hospital who is capable of doing this. And she was out of the office for a few weeks, so it took about a month just to get this going; after she came back, I had to chase her down because no one was calling me (as promised), and then had some trouble getting my calls returned (I can only imagine how swamped she was if she's the only person handling this type of thing), which added another two weeks or so.
On Thursday, I had to leave work early because the pain was so bad. On Friday, I was barely able to walk in the morning, and spent most of the day laying in bed. Apparently some time Thursday afternoon, the Girl From Rheumatology (sounds like "Girl From Ipanema" in my head) called letting me know that I'd been approved and the OIC (Oncology and Infusion Center) would be calling me to make an appointment. OIC called twice on Friday, of course, and I didn't even notice it, what with being in a pain-induced haze most of the day--not that I'd be able to do anything about it, since I couldn't hold a phone or dial during business hours.
I returned their call today morning, and got bitched at for not answering.
You'd think that people dealing with patients suffering from cancer and other diseases disruptive enough that require, you know, poison to be pumped directly into their veins in order to function would be a little more understanding.
I would like to take this moment to deeply and sincerely apologize to every receptionist whose appointment-scheduling has been ever-so-slightly disrupted by my inability to overcome the agonizing pain that keeps me pinned to the bed so I can sprightly hop on over to the phone and answer by the second ring. I have been truly selfish and thoughtless.
After sheepishly taking my well-deserved talking-to by the OIC Star Scheduler, she informed me that since I hadn't called them back until today--and really, this is my fault, I should've had the oversight to add more business days in between Friday and Monday--, she had gone ahead and scheduled me for an infusion. On the eleventh. That is, the day after tomorrow.
I'm lucky enough to have understanding bosses and to work for a fairly nice company. I shudder to think of what happens to the other poor bastards with this disease when they suddenly have to block out three to four hours in the middle of the week in the middle of a workday on two days' notice.
One last, additional problem with this whole thing: this week, of all times, my rheumatologist is out on vacation. She had mentioned she wanted me to dose up on prednisone before the infusion, but I don't have the exact dose or instructions. OIC was unable to provide me with any special instructions from my doc; her office is consulting the on-call doctor. Additionally, there may be other stuff (more meds plus observation), since I had a nasty allergic reaction to an infusion in the past. Hopefully she wrote this down some place accessible to the other people in her office.
I'm pretty freaked out and not too happy at this point. Will write more later about the medication itself and some of the things that are freaking me out about that.
KUOW was reporting this morning that the man who shot a UW staff member was a British citizen in the country illegally.
Clearly, we must build a fence on the Atlantic.
