It's not a big secret that I've been not writing here as often as I used do, and trust me, I know that I have some catching up to do. But first and foremost, let me explain that my hospital stay drug or for two weeks. I was sent home on April 2nd. Since then, I've been trying - with little to no avail - to rest up and build my energy levels. I was diagnosed with c-diff in the hospital, and the incessant diarrhea has been a real treat to deal with. On top of the c-diff, I've been vomiting at all hours of the day and night. Not being able to keep food in me has brought me to a whole new level of fatigue.
Steve and I spent most of our day in the er yesterday, having tests run to see if we could figure out why I keep vomiting. It appears that the day has come that the growth of the tumor is interfering with my digestive process. Some nutrients are still getting through, and as long as they do, I can live like this. But when the nutrients stop sneaking by, this tumor will kill me. Gulp.
That said, it was May 2015 when I was given 3-6 months. And it's been quite a year. I've done things I never would have imagined I'd so, and I've gone on adventures that I wouldn't have thought possible. Maybe there's one more miracle left, and this isn't curtains. ("Lacy, gently wafting curtains") Fingers crossed!
Showing posts with label actual boyfriend. Show all posts
Showing posts with label actual boyfriend. Show all posts
Saturday, April 16, 2016
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.
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.
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)!
Monday, February 29, 2016
It's almost March!
Like, tomorrow. Tomorrow, it will be March.
I have no idea where this month has gone!
Oh, wait. Yes, I do.
This month has gone to... chemo. I've been hanging out in bed, flat on my back (because something has changed inside of me and I can't lie on my right side anymore... the broken rib banned me from my left side in the fall, but the right side is a recent change, so it still makes me crazy on a regular (read: nightly) basis). And I've gone to acupuncture and the cancer shrink. And to Jo's for dinner once this month, and went to Logan's with my Crossmen the night before I did chemo again.
Oh, and Maggie was baptized. I left my house the weekend of her baptism. ... But, uh... that's about it.
So much for this "mild, with very few side effects" chemo that I've been on for the last two rounds. Ha!
I mean, this second round has been ABOUT A THOUSAND TIMES BETTER than the first round was. I had fevers and pain that I've NEVER had on anything else, and the nausea... oh my gosh, it was brutal. Homsi changed my premeds on this last round (flipped Zofran out and replaced it with Emend). Best move he's ever made in his professional life, I'm pretty sure, because I could control the nausea in that first week after the infusion... not something I could do with the first round. The pain is still... bad. (I mean, you guys. It's crazy.) And the fatigue is still... all consuming. But I upped my (don't worry... it's all legal) drug usage at the end of that first round, which has helped me sleep through the night. Being able to sleep has made a world of difference with the residual pain. So, it's still not awesome. I'm basically never NOT in pain these days. I don't love it, but the last two weeks have been monumentally better than the three before that were, so... I'm hoping this chemo is working, now that I don't think it's out to actually kill me with abdominal pain anymore.
(I like to think that the pain is the cancer dying. ... It may be a lie that I tell myself, but I don't care. I can't get it to go away, so my coping mechanism is to think that I have this new, special, pain inside of me because that's the tumor(s) last stranglehold. We'll see.)
Which brings me to... this is scan week.
Yes, I just had chemo two weeks ago. Yes, tomorrow is Day 14. ... And yes, we're flying to Texas tomorrow. On Day 14. To have a scan done on Day 15.
This was not my idea, fyi. Because this chemo is "mild, with very few side effects", Dr. Z wanted me to come at the end of my second cycle so we could know it it's working asap. (My gut feeling? She's pregnant and is due in March. I'm pretty sure I'm traveling now, so I'll be able to see her before she goes out for maternity leave. I think she's cramming as much in as she can before that baby comes. And I love her, so... whatever. Also, this will keep me on track to have chemo next week, so I'll stay in a true 21 day cycle and not go a full 21 days without any chemo in my system... like I did between the chemo I did in Nov & Dec and starting this at the end of January.)
Steve and I are flying out tomorrow morning. All of the tests and the follow-up/results appointments are on Wednesday. (Should a real winner of a day. ... Insert eye roll here. ... I'm tired, just thinking about it!) So, I'll post something Wednesday afternoon/evening with an update on whether or not this cocktail is doing something.
It's a little trippy to be doing medical travel with someone who isn't Judy, but... it was brutal to be there without him in December, and I'm not doing that again. So, he's coming. And I'm glad.
Come back in 48-72, and I'll have an update (and probably some awesome tumor pics from my scan... who doesn't love those?) on what's coming next.
I have no idea where this month has gone!
Oh, wait. Yes, I do.
This month has gone to... chemo. I've been hanging out in bed, flat on my back (because something has changed inside of me and I can't lie on my right side anymore... the broken rib banned me from my left side in the fall, but the right side is a recent change, so it still makes me crazy on a regular (read: nightly) basis). And I've gone to acupuncture and the cancer shrink. And to Jo's for dinner once this month, and went to Logan's with my Crossmen the night before I did chemo again.
Oh, and Maggie was baptized. I left my house the weekend of her baptism. ... But, uh... that's about it.
So much for this "mild, with very few side effects" chemo that I've been on for the last two rounds. Ha!
I mean, this second round has been ABOUT A THOUSAND TIMES BETTER than the first round was. I had fevers and pain that I've NEVER had on anything else, and the nausea... oh my gosh, it was brutal. Homsi changed my premeds on this last round (flipped Zofran out and replaced it with Emend). Best move he's ever made in his professional life, I'm pretty sure, because I could control the nausea in that first week after the infusion... not something I could do with the first round. The pain is still... bad. (I mean, you guys. It's crazy.) And the fatigue is still... all consuming. But I upped my (don't worry... it's all legal) drug usage at the end of that first round, which has helped me sleep through the night. Being able to sleep has made a world of difference with the residual pain. So, it's still not awesome. I'm basically never NOT in pain these days. I don't love it, but the last two weeks have been monumentally better than the three before that were, so... I'm hoping this chemo is working, now that I don't think it's out to actually kill me with abdominal pain anymore.
(I like to think that the pain is the cancer dying. ... It may be a lie that I tell myself, but I don't care. I can't get it to go away, so my coping mechanism is to think that I have this new, special, pain inside of me because that's the tumor(s) last stranglehold. We'll see.)
Which brings me to... this is scan week.
Yes, I just had chemo two weeks ago. Yes, tomorrow is Day 14. ... And yes, we're flying to Texas tomorrow. On Day 14. To have a scan done on Day 15.
This was not my idea, fyi. Because this chemo is "mild, with very few side effects", Dr. Z wanted me to come at the end of my second cycle so we could know it it's working asap. (My gut feeling? She's pregnant and is due in March. I'm pretty sure I'm traveling now, so I'll be able to see her before she goes out for maternity leave. I think she's cramming as much in as she can before that baby comes. And I love her, so... whatever. Also, this will keep me on track to have chemo next week, so I'll stay in a true 21 day cycle and not go a full 21 days without any chemo in my system... like I did between the chemo I did in Nov & Dec and starting this at the end of January.)
Steve and I are flying out tomorrow morning. All of the tests and the follow-up/results appointments are on Wednesday. (Should a real winner of a day. ... Insert eye roll here. ... I'm tired, just thinking about it!) So, I'll post something Wednesday afternoon/evening with an update on whether or not this cocktail is doing something.
It's a little trippy to be doing medical travel with someone who isn't Judy, but... it was brutal to be there without him in December, and I'm not doing that again. So, he's coming. And I'm glad.
Come back in 48-72, and I'll have an update (and probably some awesome tumor pics from my scan... who doesn't love those?) on what's coming next.
Wednesday, December 30, 2015
The adventures of Cancer Girl and Gun Boy
It's an unconventional love story, to be sure. But since when am I (or is anything else about my life) predictable?
All, this is Steve. We met online, in September, and were exclusive mid-October.
I'd gone online this summer, hoping to find myself a fling while I had a little bit of hair and some social energy. (Don't judge. So what if I like free movies and free dinners?) Steve was... not looking for a fling. (Because he's a better person than me.)
I wasn't sure (read: honestly did not think) that I had it in me to be in a relationship, especially with someone new to my life. On so many levels, I am not who I used to be, and I didn't think I would be able to invest the energy into getting to know someone. Nor, frankly, did I expect that I'd meet a man who would want to invest in a future with me, knowing that I had cancer, was currently between treatments, and that the chemo shoe was bound to drop in the next few months.
But... I met someone who did want to invest in a future. And he bought in, big.
He brought his compassion and his empathy and his kindness and... his... erm... guns... right into my house, and he has changed my life.
This man who I have next to nothing in common with, as far as his love of all things Star Wars and my conviction that I was meant to live (upstairs) at Downton Abbey, wanted to be a part of my life. So much so that he talked me off multiple ledges in the beginning, and has firmly stuck himself in the mud of the not-so-much-fun that is chemo.
When I wasn't sure if I wanted to put up Christmas this year, because I thought it would be hard to have a reminder that I wasn't living my normal holiday, his was the voice that reminded me that, no matter how crappy I feel, what has always made me happy will continue to make me happy -- and that, if I didn't put up my tree, the cancer would win.
When my hair started to fall out, and I was crying because I was losing (again) what had always made me beautiful, he stopped me, mid-sentence, and corrected me, saying that while he was sure my hair had made me feel pretty... I needed to know that it wasn't my hair, long or short, that had ever made me beautiful.
He's taken me to my doctor appointments, rubbed my feet when they're swollen, and held my hand while poison is pumped into my veins.
He brings me flowers, and Taco Bell, and whatever candy I tell him that I want from the gas station.
And he bends over to kiss my cheek while he's pushing my wheelchair.
I wasn't looking for a relationship. I wasn't expecting to find love, especially now, in this season of my life, smack in the middle of cancer treatments. But man alive, am I glad that I did.
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