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.
Saturday, March 19, 2016
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)!
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.
Tuesday, February 9, 2016
My special "extra dairy" diet
Contrary to popular belief, I'm not losing weight for fun. Or to "feel better". Or on purpose, on any level.
In fact, I'm intentionally making efforts not to lose much more weight.
I have a fairly limited diet (I can only eat what I can digest, after all), but I am here to tell you that I throw calories and fat at everything I can.
Case in point, would you look at how I basically frosted this burrito with sour cream?
Mmmmmmm.... That would be a smashed black bean & cheese burrito with five packets of Mild Sauce (I may or may not stockpile Taco Bell sauces for my own personal use) and about half a cup of full fat sour cream. Delish!
In fact, I'm intentionally making efforts not to lose much more weight.
I have a fairly limited diet (I can only eat what I can digest, after all), but I am here to tell you that I throw calories and fat at everything I can.
Case in point, would you look at how I basically frosted this burrito with sour cream?
Mmmmmmm.... That would be a smashed black bean & cheese burrito with five packets of Mild Sauce (I may or may not stockpile Taco Bell sauces for my own personal use) and about half a cup of full fat sour cream. Delish!
Thursday, February 4, 2016
Happy anniversary to chemo and me
February 4th is...
February 4, 2015 was the day I started chemo.
Happy freakin' anniversary!
Last night, for kicks, I did the math: 466 hours. That's how many hours I've spent hooked up to a chemo drip in the last year. (And I took just over a six month break.)
It hasn't always (or... uhm... ever, frankly) been fun, but I'm still here.
The good news? The damage to my nails from the first four rounds has almost grown out. Another month or two, and the soft and flaky part of my previously super human nails will have grown out. Woot!
The not-so-good news? This is what my skin looks like, 10 days into this new regimen.
And that's WITH copious amounts of super expensive lotion, applied daily. My body is falling apart. Literally.
The last twelve months have been doozies. Chemo's turned my life on edge in a way that I couldn't have possibly prepared myself for. It's been an unspeakably difficult year, but I'm grateful for modern medicine. Even as I spend our anniversary in bed with a heating pad on a broken rib, I am grateful for multiple doctors and several chemotherapies that have been successful in other patients with my diagnosis.
Hope springs eternal that this time next year, February 4th will be chemo-free for me. That my nails and my hair and my skin will be restored, and that some version of this drug that I hate with my whole soul will have, at the very least, stopped the growth of the tumor that is currently trying to kill my body. (I mean, I'd take total eradication in a heartbeat, but... I'd also be pleased as punch if it would just stop getting worse.)
Saturday, January 30, 2016
Side effects
It's always a good time when a girl starts a new chemo regimen. The foray into the unknown is such a fun adventure. (Insert eye roll here.)
I'm at the end of Day 5, and this is what I now know about this new drug:
Worst. Nausea. Ever.
As in E-VER. (Please consider this is coming from the woman who was on anti-nausea meds for months in 2010, aka: the girl who could barely keep down 4 carrots at a time during radiation.)
Luckily, I have multiple prescriptions for nausea meds, so I'm able to overlap and take something every four hours. But man... the nausea is wicked. It's a force to be reckoned with, and is so strong that it will wake me up from a dead sleep an hour before it's time to take a pill. It's completely insane.
Besides the nausea, I've had this real awesome full body ache thing going on. Like the flu, but 52 times worse, because the aches are combined with all-over fluid retention and swelling that is out of this world.
At the end of Day 5, I can feel my collarbone again. So, that's movement in the right direction. (My face is still swollen and puffy, and the back of my head looks like a marshmallow... again, with the fluid retention.) But I'm starting to see the swelling recede, and now I can lie on my right side, which gives me an option for sleeping.
Word on the street is that nausea is the #1 side effect for this drug, and that it gets better in the second week, with little to no side effects in the third week. (Please know that I am laughing, even as I type this, seeing as how I'm still seeing side effects from the last chemo in my daily life... and it's been more than a month since my last infusion on that regimen. But whatever.)
Tuesday, January 26, 2016
Trabectedin, Round I
Okay, so... totally unrelated to chemo, but look who I ran into again in the halls of MDA! It's Gimbel and Amanda! Best surgical team, EVER! I did the math today, and... four years, three surgeries, five tumors (of nine, so Gimble holds the title for majority of tumors pulled), one kidney, one spleen, 5 cm of diaghram, I-don't-even-know-how-many-feet-of-bowel-reconstruction, one MASSIVE hernia repair, and one stragegically placed port (placed low, so I could still wear shirts with wider necklines... I get claustrophobic in high necks, and I get gaggy when I can see a port that's placed right on a collarbone, so dude did me a solid and put that puppy in low).
Gimbel is The Man! I so love him and Amanda. I love them for saving my life, for sure. But I love them even more for always treating me like a person. I've heard so many "Surgeon/God Complex" horror stories, but I'm so glad to say... I've never experienced that. Ever. With any of my surgical staff. I looooooove them!
Gimbel is The Man! I so love him and Amanda. I love them for saving my life, for sure. But I love them even more for always treating me like a person. I've heard so many "Surgeon/God Complex" horror stories, but I'm so glad to say... I've never experienced that. Ever. With any of my surgical staff. I looooooove them!
For those of you who know how to read a blood work, report... Yes, I started chemo with low a low red blood cell count. But don't worry, when I pointed that out, I was told, "It's barely low for a normal person, and it's not "oncology" low." True story. (Love me some oncology nurses.)
What do I love?
Acupuncture treatments DURING chemo.
That red needle in between my eyes? It's to help with anxiety. And I am here to tell you... IT WORKS. I took an ativan at 7:00 this morning. Aaaaaaaand... that's it. I haven't felt remotely itchy or obsessive since acupuncture. (And I'm here to tell you, I had some major concerns about this 24 hour chemo drip before I got stuck. Say what you will about acupuncture being hippy dippy and weird, it has saved me. In so many ways!) I loooooooove acupuncture!
Please allow me to introduce you to my little friend.
This is Handy Mandy, the Chemo Clutch.
(Yup, I named her. Because I name all of the things.)
She's full of poison and has a mind of her own, so don't try to do anything off schedule or she'll screech at you. (True story.) We have a love/hate (mostly hate) thing going, but I'll be happy to upgrade that to a for sure LOVE in six weeks, if science can prove to me that packing around my own chemo in a harness-like contraption that's a combination of purse, fanny pack, backpack, and... not fashion forward in the very least... has kicked this (these?) tumor (tumors?) trash.
Remember how I had a hotel reserved for tonight, so Judy and I could stay close to the hospital and I wouldn't have to have a sleepover with the chemo in my actual house? Welllll... let's go ahead and downgrade that hotel-with-an-H to a motel-with-an-M. Fast. And let me tell you straight up that, upon arriving on the scene of the motel, I decided my life was worth more than whatever peace of mind that I thought I was buying myself with that $75 room. Luckily, their cancellation policy let me have through 6:00 PM (on the supposed night of the stay... that should have been Clue #1) to bail. So... call made to the motel, followed by website visited and online cancellation requested, and then follow up/confirmation of cancellation phone call was made to corporate, since the motel mgmnt couldn't confirm cancellation. (Methinks local management really wanted to sell at least three rooms tonight. Sadly, they're not gonna break two.)
And then I brought the chemo home for an overnight. It's really not so bad. (Don't worry about how I ran through over 3 hours just sitting at MDA, because I had to make sure I knew all of the sounds of the pump, and had to make sure I couldn't taste or smell the chemo, etc.)
This would be my **port access.
Please pause and take a look at the butterfly clip.
Sort of cute. Also, sort of gross, since butterflies are, at best, worms with wings, and this little girl is hovering over a one inch needle, but whatev.
Now, let's pause to thank my surgical team for throwing my port down so far that it's almost like it's not even there. I won't lie, it's a little tricky to access sometimes, because it's not right against bone like they usually are, but Gimbel did a good job in burying it so I rarely see it when I'm fully clothed. God bless that man!
So, the port access is right at my t-shirt line, and then the tubing has been fed down through my shirt, so it exits right at the bottom of the shirt. This is how much I can see between my shirt and Handy Mandy.
Not super grotesque. I can handle a couple feet of clear tubing, with a clear liquid running through it.
And this is what Handy Mandy looks like on the inside.
Slightly more grotesque. (I love the zipper that keeps all of her poison where I can't see it!)
Sort of like a bomb. ...*Maybe.
The chemo sits on one side. I'd show you the bag of gross, but... it's gross. Plus it's already strapped in, and I'm not running the risk of taking it out and then not being able to get it back in at the right angle. (Mandy would scream about that. I promise.) And the pump sits on the other side, keeping track of how much poison has been pushed, and how much is left to go.
The real beauty of Handy Mandy the Chemo Clutch is that she, A) holds the bag of poison, so I don't have to actually see it in its full grossness, but also B) the pump is held in such a way that I don't have to actually unzip Mandy to get the low down. There's a handy little velcro window that I can open to see how many ml's are left, and/or see what error message is running across, should something go wrong with the plan and Mandy starts getting vocal.
All in all, it seems that this 24 infusion/chemo sleepover isn't the worst thing ever. (That said, the sun just went down and I'm only 8 hours in. I'm pretty notorious for my night time freakouts, so anything's possible. But... so far, so good.) I think it'll be okay.
*I only know what bombs look like from watching TV. So sue me if I've seen that episode of Blue Bloods with the dirty bombs in NYC so many times that now I think all things that are black and have wires attached look like bombs. No judging.
*Yeah, they used my port instead of IVing my arm. Halle-FREAKIN-lujah! Texas had told me that the port isn't in stable tissue, so I'd need an IV for outpatient chemo. Interestingly enough, Arizona says that a port is a bazillion times (or, "much") more stable than an IV. So, port. Thank heaven! (Don't worry about how I keep talking myself off the ledge that something's going to go wrong with the theory that Mandy will scream bloody murder of she tries to pump chemo in and my line doesn't immediately move it through. Deep breaths.)
Monday, January 25, 2016
Taco Bell/Head Painting
For those of you who don't know... Taco Bell is my meal of choice on the night before I start chemo.
Every round, I've had Taco Bell as my final meal before going in to get back on the juice.
So, tonight, it made the most sense to have Taco Bell, chips and ice cream for dinner at the Woods' house. With Kirk's family. And some head painting. ... Because I am, pretty much, the coolest cancer patient around.
Call it a blank slate, a bald pallete. Whatever you want.
We call it a good time. From youngest to oldest:
Kirk
Russell
Hazel
Monson
Maggie and Hazy
Dad's getting in on the action (and Cili's taking up permanent residence... watch for her in, pretty much, every single picture from here on out through the night... girl got seriously addicted to painting my bald head!)
Dad, me, Hazel, Maggie and Sally
Jo and Kirk, taking turns
Jo takes her head painting VERY seriously!
(Whereas, I, clearly... do not. I got mocked tonight for my need to smile for EVERY picture. Who doesn't smile when they know their picture is being taken, is what I want to know?!)
Roomie, being hilarious. ... Or, uhm... ruling. (Whatever.)
Cili
Mag
Sally
Judy
Brett
Brett and Kirk both having some good times.
Another one of C and me
I can't believe we didn't get a shot of the other side of my head! (Because, I'm telling you, it was pretty sweet. Complete with a bucket of Blue Bell ice cream, courtesy of Russelbear, and other smiley face, since Jo and Kirk were, apparently, painting the exact same thing at the exact same time.)
The painting of the head is something I sort of stumbled across last spring when Hazel (jokingly, or maybe not...) asked if she could paint my head like an Easter Egg. (I love kids and their crazy imaginations.) Whatever it takes to make the kids okay with the baldness... it's the greatest equalizer ever. Cili, in particular, has always had a hard time with my baldness. (Sally, too. But it's hard for C on a different level.) But tonight, she was the one person who could not get enough of painting the fuzzy head. Two words: Worth it.
Whatever I can do to make the cancer, and the baldness, more fun. Not just for me, but for everyone else in my life.
Friday, January 22, 2016
TV ... and what it does to (and for) me
So, I've been hanging out at home a lot this week, waiting for insurance approval and chemo to get scheduled. It's been a different kind of living than last week. ... Last week, I was out with friends as often as I could be. This week, I've been at home, in bed, with a heating pad on my dang back/rib as much as I possibly could be. This week, I've been in a lot of pain, and I've been really tired. And that's okay, because honestly... I think a lot of why I've hurt so much this week is because I did so much last week. (Also, the chemo is enough out of my system that I don't have competing crappy side effects to distract me from the pain in my back.)
And while I've been at home, when I'm not receiving visitors (with hugs, if they bring me peanut M&M's... hint, hint), I've been watching *Chasing Life on Netflix.
I've been both curious about and afraid of watching this show. It's a show based on a 24 year old who's diagnosed with AML, so it addresses her diagnosis, treatment, struggle with acceptance, etc. It also shows what family and friends of someone who is going through the entire diagnosis to treatment to relapse to treatment, etc., roller coaster may be experiencing.
Like I said, I've been both curious and afraid. ... And, in watching it, true to form, I've struggled with some legit PTSD tied to my own battle with the dang cancer. (Don't worry about how I literally broke down in hysterical sobs in the season one finale when she picked up a mallet and started pounding on the drywall in anger. I've never wished for physical strength more than I did in that moment. ... And then I had a wave of gratitude wash over me for my brother, Kirk, and how he took me shooting this summer/fall and let me kill old TV's with his 22. I may not be strong enough to swing a mallet, but I can shoot the crap out of TV screens. And that's something!)
And while this show isn't incredibly well written (there are some real inconsistencies and serious plot holes), I've also been relieved and grateful to see that there's a show that's covering the very mixed emotions that not only cancer patients run through, but also how living with cancer can affect the people on the periphery of the fight. Because it's not just the cancer patients whose lives are turned upside down and inside out, it's everyone who loves us... especially those close enough to the nucleus that the diagnosis and treatment (and the emotional fallout of both) directly impacts their quality of life. (Caregivers and other inner circle family and friends, I'm talking to you.)
I think it's been good for me to watch a drama that's centered entirely around a young adult who is facing a cancer diagnosis and an uncertain future. While she was 24 at initial diagnosis, and I was 35 (not technically a "young adult" anymore), there have been a lot of life changes and hard cycles portrayed in this show that I've really related to. It's been interesting to spend a week buried in cancer as entertainment, on one of the few weeks I've had in the last couple months when I'm not buried in fighting it. I've laughed and I've cried, and I've cursed this blessed disease... and I've been grateful for my life, for the way that cancer has played out for me.
Bottom line, it's been a hard show to watch, but it's also created opportunities to reflect on my own experiences, and that's been good for me. Here are a few of the realizations I have had while I've been Netflix binging this week:
Holy crap, I'm so grateful for my own diagnosis, and my own situation. I'm so glad that I was 35 when I was diagnosed, and that my treatment choices have always (and obviously) been my own. I'm so glad that I was, seriously, a full-fledged adult when this shit storm hit my life, and that (outside of an unfortunate experience after my first surgery, when my surgeon and father got a little too chummy and my dad got some information before medical staff had told me how my path report read) my medical life has always been mine. I'm so glad that I have Judy, that she understands me and my needs well enough to be there for me, but not to hover, and that both of my parents have always known and respected that my surgical and treatment choices are mine.
I was 40 when chemotherapy made me sterile, not in a relationship and not, in any way, planning a family. And the appointment in which I was told that infertility was one of the certain side effects of my first treatment plan is still, hands down, the worst doctor appointment I've ever sat through. (And listen, I've sat through some doozies.) Like cancer didn't already take enough through surgeries and treatment plans. Like it didn't turn the tables upside down and make everything go sideways in my mid-30's. Like I don't already wonder if I'll have the chance to grow up and grow old like a normal person... Taking the (granted, very remote) possibility of ever having my own children off the table in one, fell, swoop was cruel. ... And, just like that, again, I'm grateful that I was 35 when the cancer storm hit, and 40 before chemo, and not in the prime of my life, where I could have lost that hope when there was still a possibility of having the family I grew up assuming I'd have. (I don't know how young adults with cancer do it. I really don't. My heart aches for them.)
Steve. Oh, good gravy. I'm so grateful for Steve that I have a hard time finding words. He has been the most tremendous help to me in the last few months. The timing in which he came into my life, who he is and what he has done for me (physically and emotionally), is nothing short of miraculous to me. He's the biggest blessing that I absolutely did not see coming, and I'm grateful every day that he walked right into my life and wants to be part of my story. He's amazing.
Having to stay strong for other people, or the perception that I have to remain strong (and upbeat, positive, happy, funny, cheerful, etc...) for others, is so difficult. Which doesn't mean that I'm not naturally those things, or that I don't want to be all of those things (for myself and for the people who love me). But man alive... it's wicked hard some days. And, often, I wish people could see that, could understand that the last thing in the world I want or need is to be praised for how ... any and/or all of those things I am. Because I am also scared, and mad, and... unsettled about all of this, and those feelings matter, too.
Cancer humor is a real thing. I was raised by a woman who learned to laugh in the face of cancer when her baby sister was diagnosed in her early 20's, so I grew up with a special brand of caustic humor pointed directly at this disease. To me, sick jokes about cancer are freaking hilarious. But, at the same time, there's this weird honor code that says the only people who can make them are the people whose lives have been directly impacted by the disease. Other cancer patients crack me the hell up. My mom and her sisters, and so many of my cousins, make me laugh out loud. (I still cackle when I remember Rachel telling a story ("she died" was the punchline) when we were at the baking retreat in October. ... It's so sick, but it's also so true.) It's an unusual thing, to be sure, but it's a coping mechanism that so many of us have in common. I don't have an official, traditional, meet-every-Tuesday-sit-in-a-circle-and-share-your-experiences-and-then-stand-around-and-talk-while-you-drink-punch-and-eat-donuts-afterwards support group, but I have a tremendous number of amazing people who have been so supportive over the last few months/years. And there are enough of them that have fought this fight that we have the ability to both commiserate and laugh together. I'm so grateful for those people who have helped me get through this, by making (and letting) me laugh.
Having a hard time planning for a future that is, currently, uncertain feels... impossible at times. And it's weird, because I used to be such a planner. And on some levels, I still am, because I like to know what I have coming up the next day or week. But now, I have a hard time planning outside of a six week time period. Like, I know that I'll start chemo next week. And that'll take the next six weeks to run through. And then I'll go to Houston, and then... maybe that next weekend I can go see my friend Monica and her new baby, before I start the next two cycles? But I can't plan past that. Like, there's a blockage in my brain. I have to know what my scan says, because that will determine if I have another six weeks of what Trabectedin or... and that's where my brain literally stops, because while I have a rational awareness that Doxorubicin may be the next drug in my arsenal, it was so horrible last year that I can't even think about a future that that drug is a part of. ... And I hate that. I hate that I feel stuck, or like my time is limited, almost all of the time. I still love my life, I'm still grateful for every day that I have. (I may not be grateful for every moment, or every hour. But every morning, I'm glad I have another day. And every night, I write down what I did that day, and I am so grateful for the opportunity to do... whatever I did.) It's weird. I can live in the moment. And in most moments, I feel alive and like almost anything is possible. But I have a hard time knowing how to plan my future anymore. ... And this show has helped me recognize that it's not like my brain is broken and that's why it works this way now - that it's part of my diagnosis, that it's part of living with cancer. And that in some weird way, not being able to plan a future has helped me appreciate the current in a way that I didn't... last year, or even last month. It's a weird paradox, but my inability to see six months down the road has made each day richer, better, more full and happier than my days were six months ago.
In short, I'm grateful for the last week of days spent in bed, watching TV. This show was a kind of therapy for me. I've always liked to read books or watch movies that make me think, and this was a different approach that got my brain going.
It's been good for me to have a mirror, of sorts, held up in front of me. Some of the symptoms and scenarios were very familiar, while some of them were... so far removed from my reality that they were obviously fiction. At the end of the series, I am grateful for the reminders of what is hard, because I was also reminded what is good. Cancer is super hard, and I wouldn't wish it on my worst enemy. It seriously sucks. But it's also seriously awesome, in that it's true, what they say... you don't really live until you know you're dying.
* Please note that this post is not a product (erm... TV show) endorsement, per se. It's not actually something I'd recommend to a lot of people, because I don't know how relate-able the cancer drama is, and... frankly, the family drama is a little bit over the top and out there, which makes the show less believable/likeable. That said, I've enjoyed it, and would love to talk (or text) with any of you who've caught it. Let me know what you think. ... And, if you're close enough to the nucleus to have felt the heat of the blast, either with me or with someone else, let me know if you think the friends/family/support staff roles are on point. I'm honestly curious about how well they nailed those characters.
And while I've been at home, when I'm not receiving visitors (with hugs, if they bring me peanut M&M's... hint, hint), I've been watching *Chasing Life on Netflix.
I've been both curious about and afraid of watching this show. It's a show based on a 24 year old who's diagnosed with AML, so it addresses her diagnosis, treatment, struggle with acceptance, etc. It also shows what family and friends of someone who is going through the entire diagnosis to treatment to relapse to treatment, etc., roller coaster may be experiencing.
Like I said, I've been both curious and afraid. ... And, in watching it, true to form, I've struggled with some legit PTSD tied to my own battle with the dang cancer. (Don't worry about how I literally broke down in hysterical sobs in the season one finale when she picked up a mallet and started pounding on the drywall in anger. I've never wished for physical strength more than I did in that moment. ... And then I had a wave of gratitude wash over me for my brother, Kirk, and how he took me shooting this summer/fall and let me kill old TV's with his 22. I may not be strong enough to swing a mallet, but I can shoot the crap out of TV screens. And that's something!)
And while this show isn't incredibly well written (there are some real inconsistencies and serious plot holes), I've also been relieved and grateful to see that there's a show that's covering the very mixed emotions that not only cancer patients run through, but also how living with cancer can affect the people on the periphery of the fight. Because it's not just the cancer patients whose lives are turned upside down and inside out, it's everyone who loves us... especially those close enough to the nucleus that the diagnosis and treatment (and the emotional fallout of both) directly impacts their quality of life. (Caregivers and other inner circle family and friends, I'm talking to you.)
I think it's been good for me to watch a drama that's centered entirely around a young adult who is facing a cancer diagnosis and an uncertain future. While she was 24 at initial diagnosis, and I was 35 (not technically a "young adult" anymore), there have been a lot of life changes and hard cycles portrayed in this show that I've really related to. It's been interesting to spend a week buried in cancer as entertainment, on one of the few weeks I've had in the last couple months when I'm not buried in fighting it. I've laughed and I've cried, and I've cursed this blessed disease... and I've been grateful for my life, for the way that cancer has played out for me.
Bottom line, it's been a hard show to watch, but it's also created opportunities to reflect on my own experiences, and that's been good for me. Here are a few of the realizations I have had while I've been Netflix binging this week:
Holy crap, I'm so grateful for my own diagnosis, and my own situation. I'm so glad that I was 35 when I was diagnosed, and that my treatment choices have always (and obviously) been my own. I'm so glad that I was, seriously, a full-fledged adult when this shit storm hit my life, and that (outside of an unfortunate experience after my first surgery, when my surgeon and father got a little too chummy and my dad got some information before medical staff had told me how my path report read) my medical life has always been mine. I'm so glad that I have Judy, that she understands me and my needs well enough to be there for me, but not to hover, and that both of my parents have always known and respected that my surgical and treatment choices are mine.
I was 40 when chemotherapy made me sterile, not in a relationship and not, in any way, planning a family. And the appointment in which I was told that infertility was one of the certain side effects of my first treatment plan is still, hands down, the worst doctor appointment I've ever sat through. (And listen, I've sat through some doozies.) Like cancer didn't already take enough through surgeries and treatment plans. Like it didn't turn the tables upside down and make everything go sideways in my mid-30's. Like I don't already wonder if I'll have the chance to grow up and grow old like a normal person... Taking the (granted, very remote) possibility of ever having my own children off the table in one, fell, swoop was cruel. ... And, just like that, again, I'm grateful that I was 35 when the cancer storm hit, and 40 before chemo, and not in the prime of my life, where I could have lost that hope when there was still a possibility of having the family I grew up assuming I'd have. (I don't know how young adults with cancer do it. I really don't. My heart aches for them.)
Steve. Oh, good gravy. I'm so grateful for Steve that I have a hard time finding words. He has been the most tremendous help to me in the last few months. The timing in which he came into my life, who he is and what he has done for me (physically and emotionally), is nothing short of miraculous to me. He's the biggest blessing that I absolutely did not see coming, and I'm grateful every day that he walked right into my life and wants to be part of my story. He's amazing.
Having to stay strong for other people, or the perception that I have to remain strong (and upbeat, positive, happy, funny, cheerful, etc...) for others, is so difficult. Which doesn't mean that I'm not naturally those things, or that I don't want to be all of those things (for myself and for the people who love me). But man alive... it's wicked hard some days. And, often, I wish people could see that, could understand that the last thing in the world I want or need is to be praised for how ... any and/or all of those things I am. Because I am also scared, and mad, and... unsettled about all of this, and those feelings matter, too.
Cancer humor is a real thing. I was raised by a woman who learned to laugh in the face of cancer when her baby sister was diagnosed in her early 20's, so I grew up with a special brand of caustic humor pointed directly at this disease. To me, sick jokes about cancer are freaking hilarious. But, at the same time, there's this weird honor code that says the only people who can make them are the people whose lives have been directly impacted by the disease. Other cancer patients crack me the hell up. My mom and her sisters, and so many of my cousins, make me laugh out loud. (I still cackle when I remember Rachel telling a story ("she died" was the punchline) when we were at the baking retreat in October. ... It's so sick, but it's also so true.) It's an unusual thing, to be sure, but it's a coping mechanism that so many of us have in common. I don't have an official, traditional, meet-every-Tuesday-sit-in-a-circle-and-share-your-experiences-and-then-stand-around-and-talk-while-you-drink-punch-and-eat-donuts-afterwards support group, but I have a tremendous number of amazing people who have been so supportive over the last few months/years. And there are enough of them that have fought this fight that we have the ability to both commiserate and laugh together. I'm so grateful for those people who have helped me get through this, by making (and letting) me laugh.
Having a hard time planning for a future that is, currently, uncertain feels... impossible at times. And it's weird, because I used to be such a planner. And on some levels, I still am, because I like to know what I have coming up the next day or week. But now, I have a hard time planning outside of a six week time period. Like, I know that I'll start chemo next week. And that'll take the next six weeks to run through. And then I'll go to Houston, and then... maybe that next weekend I can go see my friend Monica and her new baby, before I start the next two cycles? But I can't plan past that. Like, there's a blockage in my brain. I have to know what my scan says, because that will determine if I have another six weeks of what Trabectedin or... and that's where my brain literally stops, because while I have a rational awareness that Doxorubicin may be the next drug in my arsenal, it was so horrible last year that I can't even think about a future that that drug is a part of. ... And I hate that. I hate that I feel stuck, or like my time is limited, almost all of the time. I still love my life, I'm still grateful for every day that I have. (I may not be grateful for every moment, or every hour. But every morning, I'm glad I have another day. And every night, I write down what I did that day, and I am so grateful for the opportunity to do... whatever I did.) It's weird. I can live in the moment. And in most moments, I feel alive and like almost anything is possible. But I have a hard time knowing how to plan my future anymore. ... And this show has helped me recognize that it's not like my brain is broken and that's why it works this way now - that it's part of my diagnosis, that it's part of living with cancer. And that in some weird way, not being able to plan a future has helped me appreciate the current in a way that I didn't... last year, or even last month. It's a weird paradox, but my inability to see six months down the road has made each day richer, better, more full and happier than my days were six months ago.
In short, I'm grateful for the last week of days spent in bed, watching TV. This show was a kind of therapy for me. I've always liked to read books or watch movies that make me think, and this was a different approach that got my brain going.
It's been good for me to have a mirror, of sorts, held up in front of me. Some of the symptoms and scenarios were very familiar, while some of them were... so far removed from my reality that they were obviously fiction. At the end of the series, I am grateful for the reminders of what is hard, because I was also reminded what is good. Cancer is super hard, and I wouldn't wish it on my worst enemy. It seriously sucks. But it's also seriously awesome, in that it's true, what they say... you don't really live until you know you're dying.
* Please note that this post is not a product (erm... TV show) endorsement, per se. It's not actually something I'd recommend to a lot of people, because I don't know how relate-able the cancer drama is, and... frankly, the family drama is a little bit over the top and out there, which makes the show less believable/likeable. That said, I've enjoyed it, and would love to talk (or text) with any of you who've caught it. Let me know what you think. ... And, if you're close enough to the nucleus to have felt the heat of the blast, either with me or with someone else, let me know if you think the friends/family/support staff roles are on point. I'm honestly curious about how well they nailed those characters.
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