We’ve got a long one, folks. Strap in, and let’s get to it.
Neutropenic Fevers Suck And I Hate Them And Also They Can Please Stay Away
So, the last week (first week of October, basically), I spent in Cornell, recovering from a stupid fever. I had *almost* made it out of the neutropenic window of feverhood. Unfortunately, like 2-3 days before I’d have been in the clear, I went to bed with a 99.4, and was kind of expecting to need to go in the next morning. Then I woke up, and had spiked a 101.4, above the limit they had set for me to go to the hospital.
Fortunately, when we went to the ER, they took us right away, and I got my own private room, with a private bathroom. It was actually a better set up than the rooms on the leukemia floor, just because it was big, no roommate, and still had our own bathroom. Kind of ideal. Also, it only took 8 hours to get us to a room on the leukemia floor, so that was nice.
Overall the stay wasn’t that bad. The biggest issue I had was a major mouth sore that opened up on the roof of my mouth. Made eating really, really difficult. Fortunately, I could still swallow, and I could still talk. So it wasn’t as bad as the previous neutropenic visit. Few doses of dilaudid helped out. That, and a massive headache that took about 2 days to get under control. That was pretty brutal. On the bright side, though, they figured out that it was a migraine, and gave me medication to keep at home that will help deal with migraines in the future. Plus, I know what the meds are called, so if it happens again, I know what to ask for now.
Unfortunately, they didn’t start giving me neupogen until late in the stay. This meant I stayed longer, and my counts are taking a lot longer to recover from this round of chemo. As of today, I’m still at sub 10 hemoglobin, not quite fully out of neutropenia (although enough so that I’m not really at fever risk or food infection risk), and still sub 20,000 platelets. So my body is definitely taking a beating, because its getting more and more sluggish at returning to normal.
The Aforementioned Poking and Prodding
I was at Memorial Sloan Kettering basically all of Friday, to repeat the same battery of tests that Cornell did while I was there for my month long induction visit. So, pulmonary lung function (which was much more extensive at Sloan than at Cornell, and done by the sweestest little Indian grandma, which was kind of hilarious), EKG, echo-cardiogram, X-ray, CT, and blood work.
First things first. If you were to go back to some of my previous posts, you’ll notice, some where around the second consolidation, I was complaining that my PICC got pushed in too far. They did a portable chest X-Ray, and Dr. Ball / Dr. Scandora kind of poo-poo’d me and told me I was fine. They were the same guys that during induction said the same thing, and in induction, when I insisted it was eff’d, they did a standing full X-Ray, and confirmed that the end of the PICC was in my heart. Like. Inside the valves. In one of the chambers.
So, this time, they totally told me I was wrong, and I bit my tongue because I didn’t want to make a stink, and the PICC being in my heart really is just kind of annoying, not life threatening, or really that big of an issue.
But during my echo at Sloan, the tech immediately was like “Oh, you have a PICC line, huh?” and I was like “Yeah, why?”. “Oh, because it’s in your atrium.”.
SUCK ON THAT DR. BALL I WAS RIGHT. AGAIN.
I just don’t understand it. You have a patient who is an athlete, who can generally tell you what his heart rate is going to be before you take it, who basically never complains of anything, telling you that his heart is acting funny. The last time he said it, it turned out that the PICC was in his god damn heart cavity. He does it again, and you’re just all “yeah you’re fine don’t worry about it”. Well screw that, I was right. Again. So there.
Anyway, the tests seemed to go well. We finished with everything but the echo and the CT by 12, so my mom and I thought we were going to be able to finish early and not actually have to spend the whole day at MSKCC. And then we had to wait an hour and 40 minutes to get the echo (which took 12 minutes to do), and then another hour and 30 minutes to get the CT (which took 6 minutes to do).
So, no matter what hospital you’re at, things take A Long Time(tm). One thing I did notice, and this might just have been because it was a really busy day at Sloan was that I’m definitely noticing the whole “Sloan is more clinical, Presbyterian is more friendly” bit that I’ve heard. The farther up the chain you go, the friendly the doctors/PAs were at Sloan. But the techs were definitely, overall, pretty cold and clinical. The only exception was the little (I mean that literally – she was 4’9″ at best) Indian grandma that did my pulmonary lung function test. She was a sweetheart. The rest were kind of…distant. Maybe it was the volume on that day, or maybe its that everybody at Sloan ONLY deals with cancer. So everybody they deal with has it. I guess it kind of loses its “oomp” as a disease when literally everyone you see has one form of it or another.
Whereas at Presby, the techs deal with EVERYTHING. So they’re not necessarily bombarded with “oh look, here’s ANOTHER young kid with cancer”, and so they might have a bit more empathy for each case they see.
That’s just a guess.
But a quick funny story about my echo:
So the guy was eastern bloc, with a thick accent. Clearly very good at what he did, but I’m not sure if it was just a lack of empathy, a lack of any sort of bed side manner, or being busy, or what, but he was just like. “Table. Undress waist up. Sit. Turn. Lie back.” Basically, 1-2 word imperatives.
The funny thing, though, was when we finished up. He just stood up, leaving my chest covered in the sonar gram goo stuff they use, tossed a towel on me, said “use that to clean yourself”, and just straight walked out of the room.
Now, I may be a bad person for thinking this, but my immediate thought was;
“Huh, so that’s how that feels.”
If you don’t get it…don’t worry about it.
DING DONG THE PICC IS GONE
Today was one of the last pre-transplant follow ups at Cornell. I got to see my favorite day time PA, Maureen, and we went over my numbers. They’re still where they were when I was released last week. So, slow, but not unexpected, because the numbers last week were inflated from 2 units of red blood cells, and a unit of platelets. So, all these cells should be mine, which means, I’m on my way up to recovery.
I was expecting to get a bone marrow biopsy today, and Maureen was kind of expecting the same, but unfortunately, my platelets were too low to do it. The cut off is 100,000, and my platelets were….16,000. Not quite. On top of that, Maureen was thinking that if I didn’t need any transfusions, I’d be able to get the PICC removed. Unfortunately, with only 16,000 platelets, and not quite positive whether nor not my numbers would go up or down…she wasn’t sure it was the best idea.
Dr. Roboz came in, and she and Maureen were talking about the PICC. When Dr. Roboz heard the idea to remove the PICC, and that the PICC wasn’t in the right place, and that I was going to get a port for the transplant, she OK’d Maureen to yank that bad boy out. So she did.
Yes. That was in my arm. And my heart. She had to take a step back to pull the whole thing out. Good lord. Also, she told me to hum before she pulled it out. Definitely the weirdest doctor command I’ve gotten so far.
But yeah. I’m going to go to the gym tomorrow morning and do push ups and pull ups and bench press and like…a million other things involving lifting or pushing things with my arm. I can’t even express how happy I am that this thing is gone. It’s been a constant little reminder that shit isn’t ok, and that I wasn’t allowed to do things I had spent the last year doing.
So a big EFF YOU to PICC lines (despite saving me from countless needle pricks), a big I LOVE YOU to Maureen and Dr. Roboz, and a HOORAY BEER for life in general.
Lastly, I know that my other favorite PA reads my blog, and I wanted to give her a little shout out. Stephanie, I missed you during my last hospital stay, but I just wanted to say thanks for being just the best, despite having the interesting bit of luck to generally be on call whenever I had weird problems going on, and very rarely being on call when I had quiet nights. I’m pretty sure you were there for the first problem I had (eyes blowing up from platelets), and you continued to manage to draw the short straw for just about every one of my other night-time problems.
So, if you’re reading this, know that I think you’re awesome, and I’m sad that I won’t be in your care again.
So that’s it, ladies and gentlemen. Coming up, I have a dentist appointment and an appointment with Dr. Barker at MSKCC on Wednesday, then a tentatively schedule bone marrow biopsy for next Monday, and the prep work is supposedly starting next Wednesday. With how sluggish my body is, though, I’m really hoping that it’s a legitimate reason to push the transplant back a week. Just so I can have more than like…8 days to enjoy not being anemic, neutropenic, or otherwise sick. Lord knows this could be the last such period of time I either…ever…have, or have for several months. I don’t think that’s unreasonable, but we’ll see what Dr. Barker says.
Stay tuned for some updates on fundraisers, races, and just generally awesome folk being awesome. Thanks for reading!
Congrats on no picc! Hope you get your hiatus.
What a great post! Loved the fact that you KNEW what was happening with the PICC and were basically shut down by the “expert”. I hope that he reads your posts. I also got a chuckle from the sonar gram goo episode. Very perceptive of you!!
Happy to hear that the PICC has been removed. That was a wonderful photo. Keep on keeping on. You are in our thoughts daily!!
haha, glad you enjoyed 🙂
it looks like a village in your area has also lost its idiot doctor :/.. as if. its scary that dr.s dont listen to people. its kind of..yah know.. their job?
i’m interested to hear how the port goes/ works. hope every thing else goes good for yah, and enjoy your push ups 🙂
ps: laughed so hard ’bout the guy who did ur echocardiogram. lololol
I’m so glad you PICC is out. I know you we’re anxiously awaiting its removal. Thanks for the shout out. I’m sorry I wasn’t there for your last stay but I know you we’re in great hands. Good luck with the transplant! I’m wishing you warms thoughts for speedy recovery. I know you are already doing these things, but keep positive and stay strong. Make sure you come visit once your done with all this!
Glad the Picc is out – wish everything was out and over! But, I know it will be all behind you soon and then you can go out and continue your Marathon on life. love you Godson xxx