Holy crap! What the hell happened to my life?! The past couple of weeks are a blur of relentless insanity. I could document the drama for you in excruciating detail, but I ain't gonna do it. I don't think I could remember it all and I would most certainly like to leave any issues my brain has chosen to forget, forgotten. No use looking for trouble (I never say). But, even just giving you the high points is going to take some time. Get a glass of Cabernet before you settle in for this one. It's a bit long.
The Daily Show
This summer, most weekday mornings start with me stopping at the hospital for a CBC to see just how low my platelets are despite transfusion. I have The Kid in tow because after I get stuck and develop a new bruise (I look like a heroine addict at this point), I bring The Kid to day camp. After dropping said Kid at day camp, I hop in the car to drive to work and invariably receive a call from my oncologist saying I need to come in and get platelets. For those of you counting, and I truly don't know why you would be because I am most certainly not, my estimate is at least 15 transfusions in the past six week.
I then go into the office, plow through my e-mails and try to figure out just how out of touch and behind schedule I am. I'll get what I can done until about noon, when I drive up to Westchester for the platelets. Fully infused, I turn around and drive an hour-and-a-half (barring traffic and accidents) back to my office, arriving about 4:00 p.m., where I put in a few more hours and get home about 8:00 p.m. I crash, and start all over again the next day.
The Platelet Puzzle
After discovering that prednisone is apparently not doing a damn thing, my oncologist starts weaning me off and moves on to Plan B, the aforementioned IV Ig. After my insurance company drags its heels, and Ellen, the pit bull of patient advocacy in my oncologist's office has her way with the dimwits at the insurance company, I receive an enormous cooler of IV Ig within a few days. I started treatment last Tuesday, the 7th.
I returned to my oncologist's office on Thursday the 9th. Wait, let me stop here. Because, I don't know if you've been wondering how much I'm blowing on gas for all my NJ/NY gallivanting, but I sure have been. So, I tallied up. Fuel expenditures from July 7 through August 7 comes to $425.05. Yeah. Soak that one in. And, no, I do not drive an SUV or otherwise gas-guzzling monstrosity.
OK, back to Thursday at the oncologist's office. I spend the drive up trying on different scenarios of what the outcome of my first treatment could be. Maybe I've taken a major spike up. That would be the ultimate. Or, I could see a small, but definite increase that signifies things are turning around. That works for me, too. Or, I'm stable. That would suck. But, again, could signify that things are turning around, only more slowly than I'd like. Let's not forget -- I am trying to get to the UK on the 21st. The thought of my count completely tanking eludes me completely. Too bad, that, because that's precisely what it did. One platelet. One.
At this point, I believe I've found the end of the rope. The UK is quickly slipping through my fingers and I am finally starting to acknowledge the fact. Devastated. That's pretty much the word for it. I am infused with IV Ig and sent off for more platelets. I leave with 23. Not great, but whatever. At this point, I am too weary over this to care. I also leave with the knowledge that I will likely be back again the next day because, if the pattern developed over the last month is any indication, my platelets will have dropped overnight and my oncologist will not let me through the weekend without at least a passing level of platelets.
Sure enough, I've got 8 on Friday. Refer back to The Daily Show heading for how the day goes. At least, up until the part where I get to the office.
This is when I learn my oncologist has called what my nurse practitioner calls a "Platelet Guru" for some guidance. For the record, I am not calling him a Platelet Guru until some demonstrable guru-like results pour forth from him.
Anyway, Guru Dude wants me back on the prednisone. 60 mg a day to be precise. Which, as we all may or may not recall, is where I started this whole merry-go-round. So, (And this is where it gets really, really good. So pay attention.) being the intelligent and responsible patient that I am, I pull out my ever-present bottle of prednisone and look at the directions to make sure I am dosing correctly. Because we all know how important proper dosing is. Instructions are "Take two tablets once a day." Got that part? Good. Now, for some godunknown reason, I decide to check out what size tablets I have been prescribed. (I don't know about you, but I'm guessing 30 mg.) After several seconds of searching the label for the dose, I finally see it: 5 mg. What the F!
I am on the phone to my nurse practitioner in an instant. As you can imagine, I am also beyond livid. I have not been at a therapeutic dose since this utterly ridiculous and, let's not forget, life-threatening situation started over a month ago. The way I see it, I may as well have been taking Pez. This realization shoots my thoughts in multiple directions -- Who the hell do I kill? I may not see the UK and it's because someone made a mistake? I've been in a precarious and dangerous health situation and pretty much not receiving treatment for it for a month? Will this discovery finally make the difference and get me to the UK?
God. I don't know. I just don't know.
What I do know, is that I couldn't have made it through Friday had it not been for Dear Friend, who blew one of her two summer half-days to drive my sorry self, in the rain, up to Westchester for platelets. I just couldn't do it myself. My head was pounding from the strain of the past month and my newly acquired knowledge. I felt terrible taking help, as per usual. I'm trying to assuage myself by ascribing Dear Friend's selfless act to her not-so-hidden desire to give my car a test drive. Hey, I do what I have to do.