Really Long Day at MSKCC

This’ll be a short post. I have a lot more to share than what’s getting put up here, but I’m pretty shot today. And I’m about to have a whole lot more free time on my hands starting Wednesday.

Transplant Pushed Back

In case you couldn’t tell by the lack of posts about it, I succeeded in getting my transplant pushed back a week. So I get to see Louis CK tomorrow. I’m entirely too excited about it, though at the moment, I’m having difficulty expressing it. Aforementioned exhaustion and all that.

My numbers are still sluggish. My hemoglobin was 9.9 today, my white count was ~2, and my platelets were in the 40,000’s. So, despite a full week, still not much movement on that end. Troubles me a little, but Dr. Barker said she thinks, all things considered, it’s to be expected that my marrow is having trouble fully recovering at the moment. What with the whole chemo thing. Ya know. No bigs. I trust the doc, though, so I’ll just move on from it. Not like it matters, as all of my numbers are going to bottom out by this time next week.

Bone Marrow Biopsy On Tuesday’s Results

I didn’t make a post about it, but on Tuesday, I went to Sloan and got my first biopsy done there. Interestingly, my actual doctor, Dr. Barker, performed the biopsy herself. No PA, no nothin’, it was her, in the room, and one technician handling the samples as she pulled them. Odd.

She also differed from Cornell in that she did the biopsy the same way my first doctor, way back in May, in Greenwich, did. That is, I was on my side, as opposed to on my belly. Now, it seems like my right hip is much more forgiving, pain wise, for biopsies than my left hip, so that may contribute. But this biopsy was much, much more tolerable than any I’ve had to date, with the possible exception of Maureen (Dr. Roboz’s right hand PA, as it were). I’ve also been noticeably less sore.

Dr. Barker said that the patient-on-their-side method is more a UK/Australia thing (she’s Australian, in case I didn’t mention that), whereas the patient-on-the-belly thing is more US. I know which one I prefer, now, as the Greenwich one being (until now) the second most tolerable one was no fluke.

Maureen still holds the record for the fastest performed biopsy, though.

But good news – my marrow is still perfectly leukemia free. Which, while good news, is expected, and doesn’t really change anything. Like getting to pick where you want to get punched. You’re still getting punched, ya know? How good could it be?

Today’s Fiasco 

Today I had to head to Sloan to be told the results of the biopsy, get filled in on the procedure and schedule for the transplant, and get a few small things out of the way. Additionally, my dad had to go in to be taught how to give himself the neupogen injections he’ll need in order to give me the haplo boost of his stem cells. My appointment was for 11:00 am. His was 9:45 am.

Let me back up for a second, though. Since my last hospital stay, I have had a lot of trouble sleeping. Not just falling to sleep, or staying asleep, but once I’ve been asleep for an hour or two, I seem to sleep for half a day at a time. It’s been somewhat inconvenient. I’ve never been a good sleeper, though, so the disruption a hospital stay represents just exacerbates an existing problem I’ve had.

Last night, I think I finally fell asleep somewhere around 4:30 or 5. I woke up at 8:30. Already thinking about a mid-afternoon nap. Good thing our appointments were short, and early in the morning, right?

Hah.

You’d think at this point, I would know better.

When we checked in at the main desk, I purposefully didn’t check myself in. I figured that if we both checked in at once, either paperwork would get screwed up (we have the same name, different middle initial), or they would get confused with timing, or just general Bad Things(tm) would happen. My dad, being the endlessly helpful guy that he is, piped up and checked me in with him. I should have mentioned my plan before that point. We would pay the price of that mistake, numerous times to come. The guy checking us in said that I had blood work to be drawn, and that I could do it after getting my vitals done. However, when we checked in at the bone marrow clinic, he found me and said that the order was placed to wait until after Dr. Barker had seen me before going to get the labs drawn.

First, the guy at the front was confused if my dad needed his vitals taken. My father insisted it was just a training, and that he didn’t need them. Me, thinking that they would take him quickly, and the whole reason I was there that early was to be support for him if he needed it, didn’t want to go wait for vitals while they saw him.

Silly me.

So we both went to the waiting room for his appointment. 20 minutes rolls by. 30 minutes. 50. An hour. Finally someone comes out, and asks if we got vitals. I knew I’d need them, but my dad insisted he didn’t. I went to the area where they do vitals, and sat down to wait. A few minutes later, my dad came by. No words were exchanged.

We got our vitals done, and we went back. Almost another hour passes before a girl comes out to apologize about the wait, and say that we were next. So my dad and I stayed put, and waited.

By now, you should know whats coming.

60 minutes later, we were shown into a room.

One of the PAs comes in. She knows nothing about my dad’s training (scheduled for more than 2 hours prior, at this point). She goes to bring in those nurses. They come in. They leave so my PA can finish explaining things. She leaves, says Dr. Barker will see me soon. While we’re waiting, someone comes in to pull me out to get my bloodwork drawn.

I get back to the room, and a PA/Doctor/Nurse/NP (I didn’t get to meet her, so I’m not sure who she was, specifically) is wearing a circular little fake belly, and is injecting saline into it. Interesting.

She runs through the whole needle regimen with my dad, and makes him inject some saline into his belly. She puts a regular old band aid on the site. I was going to object. I keep quiet. He will regret that mistake. I blame lack of sleep.

During this, Dr. Barker comes in, which resets all the explanations, and she says she’s waiting on the CBC (complete blood count) to come back, and she doesn’t know why they waited so long to do the blood work.

Finally, all that gets done. Dr. Barker and Dr. Costello (transplant coordinator) come in to talk to me. Dr. Barker answered some lingering questions my father and I had (detailed in the next post), gave me an exam, gave me the run down on what to do / not to do from now ’til Wednesday, and then Dr. Costello ran through a lot of the things to expect during my hospital stay. She gave me a calender, gave me lists of drugs for the chemo, what to expect with the port, etc. I’ll talk about all that stuff later. I was happy that I got to talk to them both. All that we had to do was head down the elevators, collect the neupogen that was to be waiting for my dad, and get out.

Do you think that’s what happened? Do you think it was that easy? Have you been following along so far?

We get to the pharmacy (a tiny, barely marked little hole in the wall that a volunteer directed us to the incorrect place first), only to find out that nobody released the order for the neupogen for my dad. That he was told would be ready. About an hour ago. Additionally, once it was released, they’d need 30 minutes to get it ready.

My dad went back up the elevator. I stayed sitting down in the waiting area. I imagine he was…less than pleasant…to the people on the 4th floor. Oh well. Better them than me.

By the time we finally made it out of MSKCC, it was just about 3:30. Basically 5 hours. For a grand total of *maybe* an hour of time with doctors, between the two of us.

MSKCC vs Cornell/Presbyterian 

So far, I think that the nurses, PAs, and doctors at both hospitals have been amazing. During my entire stay at Cornell, I had I think one surly nurse who was on her cell phone when I needed pain meds. Maybe she had a personal emergency, or was having a bad day. Maybe my sense of time was distorted, being in a fairly decent amount of pain and wanting medication for it. My sister was with me, and she is pretty much the least patient person when it comes to watching me in pain. That might not have helped. But, given the number of days I was there, I think that’s a pretty stellar track record. Certainly not anywhere near the horror stories you hear about from people with extended hospital stays.

So far, I have every indication that my time at Sloan will be the same. The nurses have been polite, professional, adept, and occasionally, pretty funny. The PA’s that I’ve met all seem nice, and I doubt they would be at Sloan if they were anything short of stellar at their job. I love Dr. Barker. Maybe as much as I love Dr. Roboz.

But man, there is something to be said for Cornell’s support staff. While we were there, we thought there were some screw ups and mix ups, and delays, and etc. But wow. Compared to what we’ve had at MSKCC so far, Cornell was magic. Cornell was basically the picture of efficiency, despite having their default home area closed to construction, despite having to work out of a temporary receiving area, despite having transfusions all shoved into a place designed to handle, at most, half the number of transfusions it was being made to handle.

What a difference.

That being said, inpatient care vs. outpatient care tend to be two completely different animals. While I’ve been unimpressed with MSKCC’s outpatient scheduling and such, I have faith that their inpatient care will be much better.

So yeah. Short post, huh? More than 1800 words later, I’m done. For now. Expect more to come….have a lot of heavy topics to discuss, but I think they need some time to marinate first.

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4 comments

  1. kathleen628 · · Reply

    Sorry I wasn’t there with you but you know I would have had my “subtle” face an hour into the visit. Is it the sheer number of people they are dealing with or are they just numb to amount of time spent waiting? Knowing you ~you probably finished two books while there xx

    1. I think it’s that they think a given appointment will take X amount of time. And then people’s parents ask 50 questions, so each appointment actually takes X+50 minutes. 😉

  2. Seems we both got time for posts at the same time. Hope both our biopsies are stellar. Good luck with all the stuff on the horizon. Bring on the heavy topics.

    1. Thanks Emily 🙂 Good luck with your biopsy!

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