Saturday, March 19, 2016

The last 48

So... Thursday morning (to clarify, this was the middle of the night morning), I woke up, DRENCHED in sweat. Like, crazy wet. Pillow soaked through, sheets wet, even down by my feet.  It was bizarro. Because it was the middle of the night, and I was exhausted, I was able to freak back asleep, but when I woke up in the legit AM, I told Judy what had happened, and we had Instant Laundry Day. I didn't think much of the fever, outside of needing fresh sheets on my bed. Thursday was the first day I was at all hungry, so I'd had all kinds of hope that I'd turned a corner and was getting better.

You know me and me unrealistic hope in things that cannot be true. (This damn optimistic spirit can be a real kick in the pants sometimes.)

Anyway, I ate breakfast, but then got back in bed. Katie and Judy left to go shopping just after 11, and I fell asleep shortly after they left. I slept until 1 or 2:00, and woke up warm and out of breath. Did it click that I probably head another fever? Nope. I got up to make some lunch, and head to sit down to rest twice in the process of making myself a bean burrito. (Don't judge. I had to open the beans, and I have a manual can opener. It was really hard work. ... Insert eye roll here.)

After eating and showering  (a 2+ hour process, all told, because I was so out of breath that I could hardly move without winding myself), I was back in bed.

Don't worry about how I still hadn't even thought about checking my temperature.

Steve came over around 4:00. By then, I was in bed, so he came back to lie down beside me. Katie and Judy left to run another errand, and we slept until about 5:30. I had been cold, so I was under the covers and Steve was above the covers, next to me. I'd been dozing in and out for the hour he was there, and was out when he woke me up, rubbing my arm to get me to respond, because he was certain there was something wrong with me. The heat emanating from my blanket covered self had woken HIM up. He went to get the thermometer, and... yeah, there was "something wrong".

I had a temperature of 103.5.

I got out of bed, tossed the blankets, took some Tylenol and set out to prove that I could get the temp to drop.

Thirty min later, I was at 103.3. ... Not a significant drop. By now Kate and Jude were home and up to speed. They all agreed to give me another 30 min.

103.4, half an hour later.

So, at about 7:00, Thursday night, the caravan to the hospital began. (Any fevers over 100.4 send you straight to the ER when you're on chemo.)

We were in the ER for almost 8 hours, while they ran tests to find the infection that was driving the fevers, to no avail. I mean, it's good that I don't have a UTI, or a blood clot in my lungs, or the flu. But I still have these wicked fevers that keep spiking for no apparent reason. The ER doc decided to call it "Neutropenic Fevers", prescribed fluids and an intravenous antibiotic and shipped me up to the oncology floor, where I've been since about 3:00 in the AM, Thursday night/Friday morning.

Steve's spent the night with me both nights, and Judy sleeps at my apt in the night, then comes here in the day while Steve is at work.

They still have NO IDEA what's causing the fevers, but just since I've been here, my blood has gotten worse. Thursday, my platelets were at 140 (should be 700-1400, or something like that). This morning, they were at 70.

I've been on constant IV fluids to keep me hydrated, and an IV antibiotic to fight whatever mystery infection that's keeping me sick.

Really, I don't feel much worse than I usually do at home. Maybe a little more tired, because I have people checking vitals every hour on the hour through the night, so I can't get solid sleep. Definitely more cranky, because I just want to go home and get in my own bed.

I'm resigned to at least one more night, because the rule is that I need to be fever free for 24 hours before they'll let me go home, and my last fever broke in the middle of the night. It's pretty annoying, but there's nothing I can do outside of drinking a lot of fluids and not over exerting myself. So, I'm doing and not doing those two things.

Other than letting ya'll know that I'm here, with no apparent reason to be here, outside of the fevers that will not die, there's not anything new to report. Should you feel so inclined, I'm currently accepting prayers, well wishes, juju, good energy and intentions specific to keeping my fever down. And heck, if you'd like to throw in a line about how the doctors will be able to determine the root cause of all of this, that would be fine, too.

Thursday, March 17, 2016

The Red Devil

And that, kids, is how *Doxyrubicin/Adriamicin got its nickname. 

It wasn't this bright a red when I got it last time, because it was diluted in saline to go over several days. This is a hardcore bolus dose (outpatient) that takes about half an hour to push. 

I only wish I'd thought to take my phone into the bathroom with me the first time I peed after the infusion, because I am telling you... the toilet looked like it was full of Hawaiian Punch! (Oh, well. There's always next time, right?)

To prevent *fingers crossed* some of the more heinous side effects I had on this drug last year, I have an infusion on Palifermin once a day for the three days preceding chemo. (I had thought it was one infusion 72 hours before chemo and one infusion 72 hours after. That was a communication snafu. It's an infusion the three days prior, then chemo, then Neulasta the day after.) So, last week looked like this: Tuesday, Wednesday, Thursday - spent a couple hours every day at MDA for the premed, Friday - three and a half hours at MDA for chemo and other associated meds, Saturday - spent about half an hour at the hospital, getting the Neulasta shot. 

Here's how the side effects have been: intense nausea, with some actual vomiting thrown in for good measure. (I've thrown up more in the last week than I have in the last year, put together. It's been such a blast.) I'm crazy tired, and unbelievably weak. I have joint pain and abdominal swelling, and yeast infections in my mouth and otherwise that predate chemo of last week, so that's been a real treat. My head hurts and my teeth hurt. I have a new pain in the front of my left ribcage that I'm still hoping it's temporary, but I've had it for almost a week now, so.... it may just be a new thing. 

The good news is that I don't have mouth sores. (Knock on wood that it's not just that they haven't shown up yet!) And that's what the premed is supposed to help with, so it looks like it's doing its job. Halle-freakin-lujah!

All in all... I'm alive. And I woke up hungry today, for the first time in a week. So, that's a win. I'm crazy tired, physically, emotionally, mentally. I'll be okay for a while, and then my brain gets foggy and I can't remember what I was doing or talking about. That's so frustrating that I don't even have words for it, but I'm hanging in there and hoping that the fog will lift just a little in the next couple weeks. 

It's not easy. In fact, it's hard. Crazy hard. And sometimes I feel like I'm living a hell that is straight up indescribable, but I think that life is worth it. So, I keep going. One foot in front of the other, one nausea pill and one percocet at a time. 

*I'm not sure what it says about me, but I'm finding a certain level of comfort in having learned that the red devil dose for sarcoma is 150x the dose given to breast cancer patients. Not to minimize the hell that is the breast cancer dose. Any chemo is poison and is going to wreak havoc on a body, but part of me is seriously proud of my sick and weak body for taking that crap like a champ. A bedridden, drugged up,  sick and weak champ, for sure. But I'm still standing. (Uhm... figuratively.)

Saturday, March 5, 2016

Guess who's getting three new purses?

Go ahead and call me Pollyanna, but I have to focus on the upside of a scan that revealed three new tumors.

... In my lungs.

And that upside is that I buy myself a Coach bag (from an outlet store, and on clearance, so don't worry about me spending a fortune) for every tumor. (C is for Coach. C is also for cancer.) So... three new purses is something to celebrate. (No, actually, it isn't. I shook my head at my own bad sense of humor at that.)

When we first saw the scan, I was so happy to see that big, black, hole in the middle of my GIANT tumor. I had been so hopeful that the last chemo would work. I had been hopeful that it had been working, that the explanation for all of the pain - that the fiery, burning, sensation I had through the entire first round - was the cancer dying.

Well... the pain may well have been the tumor dying. But it's the opinion of the doctors that it was the tumor growing so fast that it couldn't maintain its own growth, and that's why the center of it died.

Yup. Necrosis. It's been my vocab word of the week. 

It doesn't appear that the center of the tumor dying has slowed the growth down. (Or, if it has... thank heaven! Because it's still a beast, and I have a bump coming out of my left side that's made it all but impossible to find a pair of pants that doesn't make me want cry.)

Here's a side by side of this week's scan against the January scan.

My infamous rib-breaking tumor has grown from 7.3 x 3.9 cm to 11.2 x 8.4 cm. And like almost doubling in size isn't ominous enough, the SUV has jumped from 14.7 to 23.1. That's a 57% increase, kids. And it's scary as hell, because the SUV score indicates that this bad boy is active enough to have soaked up a whole lot of the contrast. It's white hot compared to January's yellow glow. 

I hate it.

And speaking of things that I hate.... Here's a shot of one of my three new friends.

I'm going to name them Larry, Curly and Moe. (Because I've always hated The Three Stooges, and I hate these tumors, too.)

It's important to note that I don't have lung cancer. It's liposarcoma, metastasized to my lungs. In the words of my PET, "There are at least three new hypermetabolic parenchymal nodules."  There's no need to biopsy them, as I'm already in treatment for cancer. I'll be starting another new regimen next week, and while I am hopeful... I am also scared out of my ever lovin' mind, because I'm going back on Doxyrubicin (aka: Adriamycin, aka: The Red Devil). The last two treatments that I've done have been brutal. They've made me take to my bed for days at a time, they've sucked all of my energy, they've taken my memory and my ability to put sentences together properly... they've been wicked. And they're still a walk in the park, compared to what I did last spring.

It will be a different blend. Last year, I did Doxyrubicin + Ifosfamide. The Ifos has kidney impact, which is why I was in the hospital for almost a week with every infusion last spring. This regimen will be Doxyrubicin + Dacarbazine (which was, ironically, the "hard" chemo in the mix I took in November and December... now it's going to be the easy chemo), every 21 days. To try and prevent the mucusitis/open sores throughout the entirety of my digestive tract issue that I had last time, they'll give me Palifermin as a pre-med and a post-med, 72 hours before and after chemo. It'll be a few more trips to MDA the week that I get chemo (Tuesday, Palifermin - Friday, chemo - Saturday, Neulasta - Monday, Palifermin), but I'm hopeful that the pre/post med will help my body withstand the chemo, and will lighten my side effects.

I'm still scared out of my mind about doing this drug again, but... I'm hopeful that a different blend, plus a different delivery method, plus the pre/post med will help my body do what I have to do, and that this blend of chemo will be effective.

Outside of getting some pretty not awesome news at the doctor on Wednesday, the trip to Houston was good. It was the first time Steve and I have ever gone out of town together. He was a trooper and a half, pushing my wheelchair all over the airport, and then all over MDA campus for all of my appointments. He made sure I was as comfortable as I could be, from physically holding me close to his chest on the shuttle ride to the hotel, because the bumps in the road were jostling me and the movement hurt my rib, to making sure I had enough pillows and a fluffy comforter in the room. When I couldn't swallow the eggs and sausage that he'd gotten me for breakfast, he ate them for me and then went to find me some cereal. And when my poor motor skills meant that I couldn't hold onto my bowl of cereal and I spilled it all over myself and the booth we were sitting in, he calmly moved me to another table and went and found me some more cereal. Traveling was hard on my body, but it was good for my soul to be so well taken care of (and to get to eat wings at the airport on our way back home)!