Rowyn (rowyn) wrote,
Rowyn
rowyn

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Giant Ball of Stress

So we have begun the next Medical Adventure. It is not arduous by comparison with, say, Frodo's journey to Mount Doom.

I am not cut out for the journey from the Shire to Moria, much less Mount Doom.

Anyway, the next treatment step is a bone marrow transplant (henceforth BMT). I don't think I explained this here before, but it's actually pretty nifty. They harvest healthy stem cells from Lut's body, and freeze them. Then they hit him with massive chemotherapy that kills everything in his bone marrow, cancer and healthy cells alike. Then they transplant the harvested stem cells back into him. So since it's his own stem cells, there's no worry about rejection or other long-term complications.

But before they can do this, there are Many Appointments. Many many appointments. So many appointments.

Two weeks ago, they told me they would schedule these appointments for Monday and Tuesday of this week. Last Monday (11/27), I emailed the coordinator to ask if anything had been scheduled yet. She emailed me and the scheduler back and told me (a) they needed to wait for the physical therapy doctor to evaluate him on 11/28 and (b) they had several people ahead of him so they would let me know when they had anything.

On Wednesday (11/29), I still hadn't heard. I emailed them again.

I did not hear back.

I checked Lut's phone for messages. There were none. They did not try to call my phone either. At 6:15 on Friday, I got a voice mail that said "someone in your family has an appointment at [address] on Tuesday 12/5 at 1:15PM."

Well. Okay then, I guess this is taking longer than they expected.

We go to his original oncology doctor on Monday as scheduled. Oncologist: "Since you haven't gotten the BMT stuff scheduled yet, let's keep on with your treatment here." I called the number from the voice mail back to verify that this was connected with the BMT process (it was) and find out what it was. I scheduled the next shipment of Revlimid, Lut's current oral chemo drug.

Then I went to work on Tuesday morning with the plan of leaving early to take him to the afternoon appointment.

At 11AM on Tuesday, Lut got a phone call: "We noticed you didn't make any of your appointments this morning! Is there a problem?"

...

They called me, and it turned out they sent us the schedule by UPS. UPS dropped it by the door we don't use. The scheduler thought she had emailed it, or maybe she thought the coordinator had emailed it and the coordinator thought the scheduler had emailed it but in fact no one had. Scheduler: "The ones you missed are all with us so they're easy to reschedule. I will email you the appointments you haven't missed yet and then a list of the rescheduled ones."

Me: *vibrating with stress*

Fifteen minutes later, I got a schedule. It had SO MANY APPOINTMENTS. One Tuesday afternoon. Five on Wednesday morning. One on Thursday afternoon. Five on Tuesday 12/12. One each on December 16-21.

I emailed my boss to explain the SCHEDULING EXPLOSION and when I'd be out for what.

Fifteen minutes after that, I got another email: "Here are the rescheduled ones!" There were four more appointments on Thursday morning.

Me: WHAT THERE ARE MORE?!?

I am basically out of paid time off, but my boss has said I can take unpaid time off THANK GOODNESS. But I am also vibrating with financial stress so I don't want to miss paychecks if possible. So I planned to come to work when possible. Thursday is shot so full of appointments that I'm taking it off. I only missed an hour on Tuesday, because the afternoon appointment was quick enough that I could come back to work afterwards. Wednesday I planned to go to work in the afternoon.

The scheduling snafu didn't make anything significantly worse as far as missing time at work. It basically just transferred all the Tuesday morning appointments to Thursday and he had an afternoon appointment on both days anyway.

Tuesday night, I checked to see how long the trip would take to the med center for his 7AM Wednesday appointment. Google said 17 minutes. At 6-7AM, I did not expect traffic to be significantly worse (rush hour in my city is not serious), so I planned to leave at 6:30 to allow for traffic and time navigating the med center. I memorized the directions because Google Maps has been "upgraded" to the point that it now barely runs on my 2010-model phone. (Six years ago, this same phone ran Google Maps just fine. The problem with tech obsolescence nowadays is that the software changes. So even if you just want to do the same things you did several years ago, YOU CANNOT.)

On Wednesday morning as we were leaving, I tried to get the directions up on my phone anyway as backup. Ten minutes into the trip, we hit a major slowdown on the highway. An accident had closed two lanes and traffic was at a near-standstill for miles leading up to it I finished getting directions up on Google on my phone, and the highway route was now 20 minutes slower than taking surface streets. I fought my way across two lanes of traffic to the nearest exit. My phone managed to give me accurate directions for the first 15 minutes after that, but half a mile away it started doing the "I will tell you what to do two minutes after you've missed the turn" thing. x_x

We finally limped up to the medical center at 7:15, and I let Lut out at what I hoped was the right building and went to park.

Miraculously, we had indeed gotten to the right building (it's a giant complex of like eight) and the entrance was even near his appointment location.

The rest of the morning went unnaturally smoothly. The first appointment saw him ten minutes after we got in and was done with him by 8AM. Our next appointment wasn't until 9AM, but we walked over there anyway to wait. They saw us right away and were done with us by 9AM. Next he had three different kinds of x-rays, which were scheduled to take 90 minutes, first starting at 10:00 and last starting at 11:00. But radiology is walk-ins so they just take you as you show up. They took him within fifteen minutes and were done with him by 10AM. It took a little while to escape the medical center and get back to the car, but I got Lut home, picked up my lunch from the house, refueled the car, and got to work at 10:45. So I'll only be short 90 minutes or so today, too, instead of half a day.

We'll see how well tomorrow goes. He doesn't have any walk-in places tomorrow, so pretty sure that will be more like the normal medical experience. At least we don't have to get there until 10AM. Traffic will be about as bad but no getting up at 5:30AM for it. x_x And Lut has lab work so I don't need to make breakfast. I will probably just have cereal myself, instead of making something hot.

This entry was originally posted at https://rowyn.dreamwidth.org/621147.html. Please comment there using OpenID.
Tags: cancer, life
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