Saturday, September 8, 2012
The terrible mouth sore pain drops away when your immune system starts to recover. Turns out your immune system is gross, though. I will not miss having this taste in my mouth.
After a couple of days shedding medications and side effects, they're convinced I'm good to go.
PICC line is out after one last platelet infusion and I'm packing up my room.
Best. Birthday present. Ever.
Thursday, September 6, 2012
Tuesday, September 4, 2012
Background information: Despite receiving a blood transfusion yesterday for low red levels, my hematocrits were even lower today. I'm really bottoming out. I'm getting more blood as I write this and I'll need platelets after. And more blood after that.
Also, I have developed painful throat sores that make swallowing and speaking very difficult.
So here's the thing: getting any medical care provider up here to NOT waste my crucially low energy having the same, redundant conversation about my pain management options is impossible. I've hoarsely explained four times in 12 hours that I simply can't start chowing Oxy. It makes me light-headed, even dizzy, possibly pukey.
It's like these people don't understand that I've done this outpatient. They just give you a bottle of pills and send you home! Turns out, I am the best at managing my own pain. Because I am responsible, and attached to my nervous system.
I know there's guidelines and liability issues and whatnot. I need someone to work with me on this process. I need it to be about me and my unique needs.
What I've learned is that I can take Oxy, for sure, but for my own comfort I really need to taper in my dose, start small, and take it with food.
And there's the fucking rub. Getting anybody to talk to me about food is impossible. Every conversation I've had about nutrition has become one about morphine. Morphine is like the bottom of the food pyramid around here!
Finally one confused, beleaguered nurse was like "Do you want me to page the nutritionist?" YES, for the love of God. Once again, the more basic the issue (food, feelings, taking a walk) the more we need to call in an expert.
And thank the baby Jesus, because I already met with the nutritionist once right after my admission and she was awesome. Now she's hooking me up with frappes, Ensure and organic smoothies.
So I was also able to say to my nurse, "Don't you have Ensure?"
She dubiously retorted, "Yea, but most patients don't really like it."
Well, there you have it. I'm not "most patients." I'm MEEEE and I need someone to actually listen and respond to MY needs.
This is all in some part due to today's nurse. Most of the oncology nurses are freaking saints. They've been taking really good care of me. But I really need a nurse who is patient and a good listener, and my nurse today is neither of those things.
Monday, September 3, 2012
Then the legs. Ask: "Where have these legs stood today?" Probably the same places as your feet. So think "these legs have stood in this world."
Now your hands. What have these hands done today? These hands have worked in this world.
Arms. What have these arms held today? These arms have been open to the world.
Now go to your heart. This gets a little trickier. You need to ask: What has this heart felt today? You don't need to feel it all again. It doesn't need to all make sense. Just know what you felt and say, "This heart has felt the world."
Finish with your mind. This is the greatest challenge. You will ask: "What has this mind learned today?" and you will be sorely tempted to tease out the details, to analyze the mistakes, to replay the events and to imagine other scenarios.
But the point is to remember that you've experienced things that will make more sense in time and say "This mind has learned about the world."
Then you are ready for sleep.
Sunday, September 2, 2012
Frankly, and this may be the paranoia of the institutionalized, I think it was because I asked for tissues and my nurse intuited that I'd been crying.
A nurse practitioner came in and I had the same conversation for the 4th time in 2 days about why I can't sleep: my heart is pounding away in my chest. All day and night I can feel it, like a scared rabbit trying to run away.
I tried some deep-breathing / relaxation stuff that has helped in the past but in my current state it makes me light-headed.
Constant blood pressure and pulse monitoring (and another EKG) are sufficient to convince the monstrous many-headed beast that is Western medicine that my heart is not beating harder. I am simply more aware of it than other people. Lucky me.
Having half as many red blood cells as anyone reading this post has, I'm sure, nothing to do with it.
The recommendations were that I take a sedating anti-depressant called Trazodone and speak to the hospital social worker as soon as possible. He doesn't work holidays or weekends. That's not a good time to have feelings in the hospital.
He did not suggest using clonazepam, the drug I am already on that I already know works for me, because he doesn't know that and it's always constantly my job to explain myself and what I need over and over to the endless parade of care-givers in order to receive the care I need.
Here's what I did instead: I wrote a blog post (this one and another, sort of a prose poem).
I called my girlfriend, the best listener in the world, and vented my frustrations with the system that currently has me in its fumbling, insensitive talons.
I took half a clonazepam.
I fucking cried about it.
I read some poetry.
Then I felt better.
I can't help but feel that the advances we've made scientifically in treating illness have come at a steep price.
Saturday, September 1, 2012
Now we are into positive days. From here we count a lot of things. For example, my blood counts are supposed to trend down until they just about zero out around day two or three. By "counts" I mean things like WBC, ANC, HTC and PLTs. Here's the skinny:
WBC: White Blood Cell Count (Normal Reference Range: 4.5 - 11)
White blood cells help you fight infection. Not having these is what keeps me in the bubble. As of Day +3 (my 10th day of actual incanceration) this number has gone from 0.6 to 0.1. Yikes! But this nadir is part of the plan.
ANC: Absolute Neutrophil Count (Normal Reference Range: 1.8 - 7.7)
Neutrophils are a kind of white blood cell that fight off infection. This is where the word "neutropenic" comes from and this count is the single most determining factor in my release. It needs to be above 1 (or 1000, depending on how they report it) and trending up. My counts could be inflated a bit falsely because I am on a drug that encourages mass production of these puppies. But fear not, they are all dead or dying. Day 3 count: 0.03.
HTC: Hematocrits (Normal Reference Range: 41 - 53)
Red blood cells, basically. Low hematocrit counts (below 22ish) mean you get blood transfusions. Symptoms of low HTC counts include anemia and feeling like FUCKING ZOMBIE DEATH. Today's verdict: 26.4.
PLTs: Platelets (Normal Reference Range: 150 - 400)
Platelets help your blood coagulate, so that when you get cut, you don't just spurt all your needed life juices all over the place until you DIE. I need to not get cut in the near future. This is part of the reason why they are hospitalizing me also. At least if I am injured I am already here... my chances fare much better that way. Anyway as these counts plummet (below 20) they will also give me platelet transfusions. Hopefully low platelets will not be a huge problem. Currently the number is 49.
And that's how you superchemo.