Yeah, I'm whining, I know. But it's better to get it out here than let loose on some asshole who desperately deserves it (or not). Today is not a good day to fuck with me. I am in a mood. And I feel like shit.
Wah.
This is my own story of life with advanced ovarian cancer. I do not offer medical advice, and my treatment decisions are my own. Please talk to your physician or healer and gain as much information as you can about this dreadful disease called cancer. Remember, knowledge is Power!
Wednesday, April 28
Bitchy McBitcherson
I'm at that point in chemo (1 more month to go, 3 more blasts) where the cumulative effects are kickin my ass. It's a beautiful day outside and I want to be lounging by the pool with an ice cold beer. But I have to stay out of the sun, and I feel too pukey for a beer. Woe is me. :( I got the Neulasta shot with my chemo on Monday and feel like I've been hit by a truck. Percocet is not my friend today. Got the itch-fest going on with that, and the hot flashes are way out of control. Did I say woe is me?
Yeah, I'm whining, I know. But it's better to get it out here than let loose on some asshole who desperately deserves it (or not). Today is not a good day to fuck with me. I am in a mood. And I feel like shit.
Wah.
Yeah, I'm whining, I know. But it's better to get it out here than let loose on some asshole who desperately deserves it (or not). Today is not a good day to fuck with me. I am in a mood. And I feel like shit.
Wah.
Sunday, April 11
Anticipatory Nausea
There's really nothin' or nobody that can fuck with your head like your own head. Even when you know what's up and why you feel that way.
Since I started this second round of chemo, every time I go causes me much anxiety and nausea. None of my anti-nausea meds help with this. Xanax isn't helping much either, especially because I drive myself to and from chemo since it's only a short infusion.
My sister is in the hospital right now for diverticulitis. The hospital is right across the street from my Onc office where I get my chemo. It turns out that I don't even have to be going to chemo- just the drive up there gets me all worked up, and I've been up there a lot this past week.
I talked to my chemo nurse on Friday. She said to expect to have more chemo on Monday because the onc said I could/should, Avastin or not.
Anticipatory nausea, indeed. Makes me want to barf just thinking about it.
Since I started this second round of chemo, every time I go causes me much anxiety and nausea. None of my anti-nausea meds help with this. Xanax isn't helping much either, especially because I drive myself to and from chemo since it's only a short infusion.
My sister is in the hospital right now for diverticulitis. The hospital is right across the street from my Onc office where I get my chemo. It turns out that I don't even have to be going to chemo- just the drive up there gets me all worked up, and I've been up there a lot this past week.
I talked to my chemo nurse on Friday. She said to expect to have more chemo on Monday because the onc said I could/should, Avastin or not.
Anticipatory nausea, indeed. Makes me want to barf just thinking about it.
Wednesday, April 7
Dodgeball
I've been warned. I'm not allowed to bleed. I don't know if I can handle that. I think I bleed from somewhere almost every day, whether it's a paper cut, a hangnail, a nosebleed, whatever. Not that I'm accident prone or anything. *cough cough
Coumadin is my newest pharmacological adventure. It's supposed to thin my blood to prevent more clots from forming. Great. Cool. I get that. I'm also taking Diflucan (antifungal) for the Valley Fever thing. Per the pulmonologist yesterday, Diflucan really, really "enhances" the Coumadin, meaning it's making my blood almost like kool-aid and I have to be very careful not to injure myself. (not that I'm accident prone). If I start bleeding out of my eyeballs, I guess that's not good either, and will really put a damper on my beer drinking. But the pulm doc says I'm doing good, considering, and he'll see me in 6 months unless I need him before that.
I saw my PCP on Monday. He's keeping track of my Coumadin levels and PT (clotting factors). My INR was 2.1 so that means I can stop the Lovenox injections. Can you say AMEN? On the Suck-O-Meter, that registered at a 10. Look at my chunky monkey! But bruises fade. The fog lifts. And some day my blood will be thicker than water again.
I'll see my PCP again tomorrow for INR check, and what the cardiologist has to say on Friday. Next week we'll figure out what's next. Stay tuned.
Friday, April 2
Leo is a douche
Is it Friday already? Time sure flies when you're gorked out in the hospital for a few days. I've been trying to piece together what happened after I got to the hospital Saturday night, but I got a lot of pain meds soon after I got there until I left on Tuesday, so it's pretty blurry.
I had a pulmonary embolism, or (multiple) blood clots in both lungs. Hurt like a BITCH. I vaguely remember my dude getting there Saturday night, and my mom and my sister coming early Sunday morning. I don't remember calling my mom. (or anyone else, so if I emailed, called or tried to text you during that time, sorry! I can only type/text/speak in GORK-mode while on morphine. Actually, while we're on that subject- pretty much anything I write, post or say or do after my Ambien kicks in at night is gonna be strange.)
My daughter and her friend made it down and watched over me until Monday. And started a ruckus with the nurses because they couldn't give her information she wanted. "Leo is a douche" was her text message to me after she left. {Please don't annoy the people who are sticking needles in Mommy, darling. They know what they're doing, and when there's more information to give, you will get it. We're not holding out on you, or protecting you from the truth. We just don't know right now. }
My dude was in and out. So was I. ha. He brought me chocolate cheesecake. Better than morphine or dilaudid, that's for sure. Apparently, I had consults with nutritionists, the oncologist, the pain management dude, etc. I have paperwork that says I did, anyway. I remember the walls bulging, and talking to myself.
I got discharged on Tuesday. Taken off Heparin drip, started on oral Coumadin and Lovenox. Had to pick up my boy from the airport that night- he'd been in Chicago with Daddy Dearest for the past 2 weeks for spring break. I saw a unicorn on the way to the airport. No shit, I did. He was white and sparkly.
Wednesday- took the kid to school. Went back to the ER for repeat episode of lung/rib/chest pain. Workup was negative for new emboli. How come it hurts so much? More pain meds.
Thursday- had follow up at PCP office. Had to see the PA, but she knows her shit. They will be monitoring my Coumadin levels and my INR. Seems to be a problem taking coumadin and diflucan together- They will talk to pulmonologist, oncologist, cardiologist. I'll see the PCP on Monday to figure out what's next. Apparently, Avastin, which has so many good things happening with it, carries a higher risk of thromboembolism (blood clots). But so does cancer, hormone therapy, smoking, and a bunch of other stuff.
In the meantime, my chemo is on hold AGAIN. That may be a good thing, cuz I'll tell ya- that shit's killin' me.
I had a pulmonary embolism, or (multiple) blood clots in both lungs. Hurt like a BITCH. I vaguely remember my dude getting there Saturday night, and my mom and my sister coming early Sunday morning. I don't remember calling my mom. (or anyone else, so if I emailed, called or tried to text you during that time, sorry! I can only type/text/speak in GORK-mode while on morphine. Actually, while we're on that subject- pretty much anything I write, post or say or do after my Ambien kicks in at night is gonna be strange.)
My daughter and her friend made it down and watched over me until Monday. And started a ruckus with the nurses because they couldn't give her information she wanted. "Leo is a douche" was her text message to me after she left. {Please don't annoy the people who are sticking needles in Mommy, darling. They know what they're doing, and when there's more information to give, you will get it. We're not holding out on you, or protecting you from the truth. We just don't know right now. }
My dude was in and out. So was I. ha. He brought me chocolate cheesecake. Better than morphine or dilaudid, that's for sure. Apparently, I had consults with nutritionists, the oncologist, the pain management dude, etc. I have paperwork that says I did, anyway. I remember the walls bulging, and talking to myself.
I got discharged on Tuesday. Taken off Heparin drip, started on oral Coumadin and Lovenox. Had to pick up my boy from the airport that night- he'd been in Chicago with Daddy Dearest for the past 2 weeks for spring break. I saw a unicorn on the way to the airport. No shit, I did. He was white and sparkly.
Wednesday- took the kid to school. Went back to the ER for repeat episode of lung/rib/chest pain. Workup was negative for new emboli. How come it hurts so much? More pain meds.
Thursday- had follow up at PCP office. Had to see the PA, but she knows her shit. They will be monitoring my Coumadin levels and my INR. Seems to be a problem taking coumadin and diflucan together- They will talk to pulmonologist, oncologist, cardiologist. I'll see the PCP on Monday to figure out what's next. Apparently, Avastin, which has so many good things happening with it, carries a higher risk of thromboembolism (blood clots). But so does cancer, hormone therapy, smoking, and a bunch of other stuff.
In the meantime, my chemo is on hold AGAIN. That may be a good thing, cuz I'll tell ya- that shit's killin' me.
Wednesday, March 31
Still spinning
Got discharged from the hospital yesterday, and was back today for another episode of lung/rib/chest pain. Workup showed no new embolism. Got morphine, Lovenox, prescriptions, sent home. When I come back to earth I'll try to make sense of it all.
Monday, March 29
Where do I even start?
I was actually feeling good enough to go out for a little while on Saturday night to see the band. I spent a lot of time on my 38 hairs and makeup, and drew on my best eyebrows EVER. Cute boots, jeans that fit, jewelry, perfume, the whole 9 yards. I don't get out much any more, and besides, it was my birthday. It was about 9:30 and I'm ready to go, just had to run the dog out first.
So I take the dog out. It's a nice night. The neighborhood is quiet. No cats to chase, so the walk is pretty uneventful. I come back home and hang up the leash, and I get this weird pain in my left ribs- like when you're running and get that stitch in your side? I thought "WTF?", and gave the dog his cookie (everything is cookies to him). Suddenly, I felt like someone had put the Vulcan Nerve Pinch on me. I gasped, and couldn't draw a deep breath.
Well, shit. Stabbing pain in my ribs. Vulcan Nerve Pinch on my neck. That could only mean one thing. Well, it could mean several, actually, but it really meant that I was all dressed up and had only the E.R. to go. Of course, I drove myself- the hospital is only 6 blocks away and by the time I called 911 and EMS got here I coulda died (I know, I've seen them try to get into my apartment complex at night when the gates are closed). Called my dude, told him I wasn't gonna make it to the show tonight, and said "but don't worry! I'm fine! It's probably a pulled muscle or something. Do your show, do your thing, then come up to the hospital, I'll still be there in a few hours. I'm fine! I'll call you if anything happens." I'm a frequent flyer at my local ER so I know how long it takes to do a cardiac workup and find out it's nothing (about 4 hours). Yeah, yeah. I know.
Workup shows I have PULMONARY EMBOLISM, or blood clots in my lungs. Can you believe this howdy doody? It feels like my ribs are broken! Needles, needles, needles, port access, heparin, dilaudid, morphine. Don't remember much after that. To be continued. . . .
So I take the dog out. It's a nice night. The neighborhood is quiet. No cats to chase, so the walk is pretty uneventful. I come back home and hang up the leash, and I get this weird pain in my left ribs- like when you're running and get that stitch in your side? I thought "WTF?", and gave the dog his cookie (everything is cookies to him). Suddenly, I felt like someone had put the Vulcan Nerve Pinch on me. I gasped, and couldn't draw a deep breath.
Well, shit. Stabbing pain in my ribs. Vulcan Nerve Pinch on my neck. That could only mean one thing. Well, it could mean several, actually, but it really meant that I was all dressed up and had only the E.R. to go. Of course, I drove myself- the hospital is only 6 blocks away and by the time I called 911 and EMS got here I coulda died (I know, I've seen them try to get into my apartment complex at night when the gates are closed). Called my dude, told him I wasn't gonna make it to the show tonight, and said "but don't worry! I'm fine! It's probably a pulled muscle or something. Do your show, do your thing, then come up to the hospital, I'll still be there in a few hours. I'm fine! I'll call you if anything happens." I'm a frequent flyer at my local ER so I know how long it takes to do a cardiac workup and find out it's nothing (about 4 hours). Yeah, yeah. I know.
Workup shows I have PULMONARY EMBOLISM, or blood clots in my lungs. Can you believe this howdy doody? It feels like my ribs are broken! Needles, needles, needles, port access, heparin, dilaudid, morphine. Don't remember much after that. To be continued. . . .
Wednesday, March 24
Tomorrow's my birthday
Last year on my 48th birthday I met my oncologist for the first time. The day after that, he was removing parts from my body. The day after that, he told me I had advanced metastatic serous papillary carcinoma, or Stage III-C, Grade 3 Ovarian Cancer that had spread to my omentum, spleen, and some lymph nodes. I had not had any symptoms before this.
This past year has been full of shocks, decisions, uncertainty, debilitating pain, fear, needles, needles, needles, chemo, side effects, facing mortality, recurrence, more chemo. But it's also been full of deep reflection, spiritual growth, and unwavering love and support from those who know me, and also from some who didn't know me at all. I've met so many good, kind, caring, generous and loving people during this adventure.
I've already been through the worst. Turning 49 should be a breeze.
This past year has been full of shocks, decisions, uncertainty, debilitating pain, fear, needles, needles, needles, chemo, side effects, facing mortality, recurrence, more chemo. But it's also been full of deep reflection, spiritual growth, and unwavering love and support from those who know me, and also from some who didn't know me at all. I've met so many good, kind, caring, generous and loving people during this adventure.
I've already been through the worst. Turning 49 should be a breeze.
Monday, March 15
Suck it up, Buttercup
Okay, so I guess I'm not dying right away. Good thing, cuz I'm not ready yet. Pity party over.
CT results are "looking good" mid-chemo, meaning that no new stuff is showing up, and some old stuff isn't there any more. SAA-WEEET!!! Got started back up with chemo today (Topotecan and Avastin). I'll do another 3 months with that, but I gotta admit it was really nice being off for these past few weeks. I was almost back to humanoid.
As soon as the chemo kicks in I'll be back in the bubble, (not the same as chemo-brain) but that's okay- I know that place, and it only lasts a few days at a time. It's the rabbit hole I'm afraid of. My oncologist tells me that there are a lot of good things happening with Avastin. I hope so.
Thanks to my peeps for keeping me going. You know who you are.
Big love,
CT results are "looking good" mid-chemo, meaning that no new stuff is showing up, and some old stuff isn't there any more. SAA-WEEET!!! Got started back up with chemo today (Topotecan and Avastin). I'll do another 3 months with that, but I gotta admit it was really nice being off for these past few weeks. I was almost back to humanoid.
As soon as the chemo kicks in I'll be back in the bubble, (not the same as chemo-brain) but that's okay- I know that place, and it only lasts a few days at a time. It's the rabbit hole I'm afraid of. My oncologist tells me that there are a lot of good things happening with Avastin. I hope so.
Thanks to my peeps for keeping me going. You know who you are.
Big love,
Tuesday, March 9
Here there be monsters
Fear, depression, fatigue or pain can take you to some pretty dark places. When you have them all, for an extended period of time, you go pretty deep down the rabbit hole. So much going on but no answers to anything. Too many meds. Weird side effects. Yeah, I know it's cancer and chemo- but I don't have to like it. I'm just trying to survive it. It's also been dark and cold and rainy for the last couple weeks, so maybe that added something to it.
My appointment with the onc yesterday got rescheduled because of an emergency (glad it wasn't me) so now I have to wait ANOTHER week to discuss my recent CT results and The Plan. This makes 4 weeks off chemo, right in the middle of treatment. I don't like this. Not one bit. This is what I get for demanding shit (CT scans) in the middle of treatment.
But today, as I was curled up in my blanket, with my ass growing roots into my couch and my cold, dead fingers wrapped around the remote- I thought "GET YOUR ASS UP. YOU'VE GOT SHIT TO DO." Then my sweetie came home and said "Hey! We gotta get some SUN in here!" and went around opening blinds and such. Then we went out for pizza. As far as my CT scan I'm going with the "no news is good news" approach. Ain't much else I have the energy to do.
Stay away from rabbit holes. That way lies madness.
My appointment with the onc yesterday got rescheduled because of an emergency (glad it wasn't me) so now I have to wait ANOTHER week to discuss my recent CT results and The Plan. This makes 4 weeks off chemo, right in the middle of treatment. I don't like this. Not one bit. This is what I get for demanding shit (CT scans) in the middle of treatment.
But today, as I was curled up in my blanket, with my ass growing roots into my couch and my cold, dead fingers wrapped around the remote- I thought "GET YOUR ASS UP. YOU'VE GOT SHIT TO DO." Then my sweetie came home and said "Hey! We gotta get some SUN in here!" and went around opening blinds and such. Then we went out for pizza. As far as my CT scan I'm going with the "no news is good news" approach. Ain't much else I have the energy to do.
Stay away from rabbit holes. That way lies madness.
Sunday, March 7
Weekly roundup
It's been a bad week. I had the barium CT on Tuesday, and have to wait til NEXT Tuesday to get any results. Did you know that barium can exit your body at the most random times? (You know what I'm talkin' about, Willis.) Wednesday night I was in the ER (2nd trip this year) for severe pain in my left calf. Had a 4 hour workup for DVT but all tests were negative. I was given a new rx for Percocet and sent home. It still hurts like a mofo, and all my major joints are painin' me, too. I have to decide whether to suffer the pain, or fall into oblivion with the Percocet. The Percocet wins, every time.
My support group at the Wellness Community yesterday were awesome, as usual. I need to go there as much as I can because I find comfort there, from many sources. If you have a Wellness Community in your area, I encourage you to check it out. It's free.
I really shouldn't be PUI (posting under the influence), but it sure makes for some interesting reading the next day.
My support group at the Wellness Community yesterday were awesome, as usual. I need to go there as much as I can because I find comfort there, from many sources. If you have a Wellness Community in your area, I encourage you to check it out. It's free.
I really shouldn't be PUI (posting under the influence), but it sure makes for some interesting reading the next day.
Monday, March 1
Very Berry-Yum
Tomorrow I'm getting the mid-chemo CT I demanded.
Keep your fingers crossed that this 2nd round is working and I get a clear scan.
Thanks!
There Are Days That. . .
I just want to sleep.
All I want is chocolate.
I'm so anxious I'm could pop.
I'm really sad.
I hurt all over.
I'd rather swallow Drano than go to chemo.
I don't even remember.
I feel over medicated.
I miss my life.
I'm really mad.
I don't want to answer the phone.
I want to cry.
I could use some good news.
And then there are nights. . .
All I want is chocolate.
I'm so anxious I'm could pop.
I'm really sad.
I hurt all over.
I'd rather swallow Drano than go to chemo.
I don't even remember.
I feel over medicated.
I miss my life.
I'm really mad.
I don't want to answer the phone.
I want to cry.
I could use some good news.
And then there are nights. . .
Thursday, February 18
Grateful
So grateful to my family, my friends, my dude, my kids, my dog, my docs, my employers, coworkers, church people, Singleton Moms, the Black Sheep Motorcycle Ministry, Happily Ever After League, Sisters In Survival, The Wellness Community and everyone else who took the time to hold me up, lend a hand, help me out, pray for me, and love me. I wouldn't be here without you. I am blessed.
Happy Feet
Turquoise is my favorite color (and purple). I had to have these. I got purple high-tops. I'm a dork, I know.
Tuesday, February 16
Don'tcha hate it when
you can't remember where you hid your stash? I mean . . . . stashed your . . . um . . never mind.
Sunday, February 14
Back in the Bubble
The Bubble is where I live after chemo. It's all in my head; the dizziness, the nausea, the feeling of being pumped too full of liquid, or like an overfilled helium balloon with the top of my head trying to float off. It's like riding the merry-go-round for too long. I need to remember to tie my head down.
Tomorrow will be infusion 3C at Club Chemo and I will be halfway done with treatment (again). I saw my PCP last week about the ringing in my ears, nosebleeds, insomnia, and the fact that I'm losing my mind. He told me I'm pretty much SOL about the tinnitus (ringing), there isn't really anything that can be done. I figured they could just bong me with a tuning fork and re-set something. Guess not. (I'm sure a bong wouldn't hurt, though)
The nosebleeds could be from the dry air, or maybe because my nose constantly runs while I'm on chemo and I've just worn a hole in my septum with all the wiping and blowing. Either way, it hurts like hell and will bleed at the most random times; at the grocery store, while driving, or walking the dog. Hopefully, it won't get any worse or we'll be talking about cautery. Inside my sinuses.. Lord help me.
As far as insomnia and extreme anxiety go, I'm trying out some new meds. We'll see how that goes.
Tomorrow will be infusion 3C at Club Chemo and I will be halfway done with treatment (again). I saw my PCP last week about the ringing in my ears, nosebleeds, insomnia, and the fact that I'm losing my mind. He told me I'm pretty much SOL about the tinnitus (ringing), there isn't really anything that can be done. I figured they could just bong me with a tuning fork and re-set something. Guess not. (I'm sure a bong wouldn't hurt, though)
The nosebleeds could be from the dry air, or maybe because my nose constantly runs while I'm on chemo and I've just worn a hole in my septum with all the wiping and blowing. Either way, it hurts like hell and will bleed at the most random times; at the grocery store, while driving, or walking the dog. Hopefully, it won't get any worse or we'll be talking about cautery. Inside my sinuses.. Lord help me.
As far as insomnia and extreme anxiety go, I'm trying out some new meds. We'll see how that goes.
Thursday, February 11
How Many CTs Can You Have Before you Get Cancer?
I mean, really. Off the top of my head I can remember having 12 in the past year. 6 or 7 chest X-rays. I swear. One of these days I'm gonna get cancer.
My Story: Incidental findings 2009
Even if nobody else reads this I find that writing it all down this time helps me deal with it. So here it is:
A Year In The Life
2009 sure started with a bang. I hadn’t been sick in a long time so it was weird when I got that sudden, debilitating joint pain in February. It was so bad one day I had to go to the ER. I got pain meds and some blood tests but nothing was found. I was told to follow up with my PCP and referred to a Rheumatologist. He checked me for EVERYTHING, but nothing showed up on the labs. I got heavy duty pain meds and steroids but no answers. My pain remained. I dealt with it.
March 09
3/04: Had a little throbbing in my kidney so I had an abdominal ultrasound to check for kidney stones. Sure enough! I have kidney stones! Okay, now what?
3/12: Follow up CT scan to confirm kidney stones.
3/16: PCP called, worried. Kidney stones for sure, but incidentally, my ovaries and pelvis were found to have of all KINDS of other things that didn't belong there. Further investigation needed. Blood tests and more imaging ordered. Fuck.
3/17: CA-125 = 383. Fuck.
3/19: Pelvic ultrasound: multiple nodules, complex cysts, unusual vascularity- all “strongly suggestive of ovarian neoplasm with high risk of malignancy.” Fuck.
3/23: CT abdomen with contrast. Vanilla Smoothie Barium. Yum. Off to my PCP for pre-op evaluation. Labs, chest x-ray, ekg. Fuck.
3/25: Gyn/oncology consult. Doesn’t look good. Wants to do surgery TOMORROW. “you’ll have to skip your birthday dinner. Go home and start your bowel prep and only clears until midnight.“ Happy fucking birthday to me. Beer is clear, right?
3/26: Open exploratory surgery. 4 hours. I am now lighter by 2 ovaries, my omentum (whatever that was), my spleen, several lymph nodes, and other assorted nuts and bolts totaling 26 specimens for pathology. My diagnosis was metastatic high-grade papillary serous carcinoma/ Stage 3C/Grade 3 ovarian cancer. I had 2 infusion ports placed for future chemo therapy; an intraperitoneal (IP) port in my abdomen and one up on my chest for IV infusion. I was on the 6 day 5 night Hospital cruise on the Good Ship Dilaudid. I got a blood transfusion. I vaguely remember that. I have a 14 inch scar running down my belly. I've been gutted like a deer.
April 09
4/23: started rigorous chemo therapy regimen: Taxol and Cisplatin/Carboplatin both IV and IP. Eighteen infusions over 6 months. Okay, I thought. Hook me up and let’s get this thing kicked. I’m too busy for this! I’ve got shit to do!
CA-125 was 198. Woot!
4/27: Back to work. Woot!
May 09
Worked as much as possible during my treatments, but nausea and fatigue from chemo was kickin’ my butt. I couldn’t sleep. I got pills for sleeping, anxiety, depression, nausea, pain, hot flashes and more steroids. Whee. (not) My pill collection was growing. I felt like my grandma.
5/11: CA-125 = 113. Steadily dropping- Yay!
June 09
6/6: 3 days after the second IP chemo infusion, I went to the ER with chest pain. EKG revealed an acute MI (heart attack). I won the 3 day 3 night vacation in the ICU and Telemetry units. They didn’t actually blame it on the chemo, but recommended I didn’t use Taxol any more. I added a cardiologist to my ever-growing list of doctors and was prescribed ACE inhibitors, beta blockers, blood thinners, aspirin and cholesterol medications, and referred to cardiac rehab. Woot. (not)
CA-125 was down to 58.
6/23: Resumed chemo therapy- started Gemzar/ Cisplatin/ Carboplatin.
CA-125 was 32. Woot! In the "normal" range!
6/29: started cardiac rehab. Slow stretching, ride the bike, walk the treadmill. Not so bad but I was really feeling the chemo.
July 09
cardiac rehab chemo rehab chemo blur blur hot (summer in Arizona) blur fuzzy hazey hot rehab. . . CA-125 was 22
August 2009
8/3: Back to the ER for severe abdominal pain. More CT scans and a ride on the Morphine Express. No obstruction, thank God, but almost! Can’t do cardiac rehab any more. Right now it’s Just. Too. Much.
Fucked up labs. Great. Low white cells earned me a Neulasta shot. Low red cells won me a blood transfusion! But really, it's AMAZING how you feel after a blood transfusion! (compared to how I was feeling).
8/13: My last chemo. Praise the Lord and pass the biscuits! Started working about 50 hours a week to try to catch up. Have to wait 4 weeks until I can get PET scan. Another Neulasta shot.
CA-125 was 16.
September 09:
9/14: I had my first total and complete breakdown in the parking lot before the appointment for my PET scan. What was up with that? I was finally DONE! This was just the last little thing to do, then life would go on and we could forget about all that. . . unpleasantness. But eventually, all things catch up with you and you need to let it out.
9/16: PET scan results showed a clear abdomen, pelvis, head, neck, bone marrow. Woot! That’s what I wanted to hear. BUT (incidentally, of course).... Also “multiple hyper-metabolic foci are seen throughout the chest” in 5 places. OH COME ON, PEGGY SUE! What’s next? Wolves? (I shouldn’t have asked). A lung biopsy was ordered.
9/18: was back in the ER for chest pain. Labs, EKG normal. Apparently, I’m just stressed out. Ya think? Chest CT showed nodules in my lungs. Um, yeah. I know. Thanks.
9/24: CT/lung biopsy on one of the nodules (there were 5). Biopsy came back as “non diagnostic”, meaning they missed it. Referred to lung doctor.
October 09
10/5: added Pulmonologist to my ever growing list of Ologists. Lab tests performed.
10/7: sent for repeat CT lung biopsy. Before they could stick the needle in, the radiologist said the nodules were smaller than from 2 weeks ago. Really? Awesome! Could just be an infection, you say? That would be SWEET. Now what?
10/12: blood test positive for coccidioidal infection/exposure (Valley Fever). Hmm. I’ve lived in Arizona for a long time and never got Valley Fever. And I didn’t have it back in February when the Rheumatologist tested for it. Apparently, I was exposed to it during the summer while my immune system was suppressed from the chemo.
Valley Fever is a fungal infection that gets into your lungs from spores in the dirt that blows around here in the Southwest. THAT’S what the lung/chest nodules were, an infection! Cool! We can get rid of that, right? Load me up. So I was put on Diflucan 400 mg per day (forever) and told to stop taking Lipitor. Check. Liver function test in a month. Check. Now what? Am I clear? Who is gonna clear me??
According to the pulmonologist: shrinking lung nodules/ CA-125 at an all-time low of 12 =
I did it! I got my dance card! I was dancing with NED! I was in remission! I was cancer free! I WAS FREE. So I proceeded to have my second total and complete breakdown. You really SHOULD be letting that stuff out. Otherwise, you’ll pop.
I called everybody. I posted blogs and bulletins and popped a cork. Time for life to go on! Get back to work! Time to get this abdominal port out! It hadn’t been used for IP chemo since June because of the heart attack. My chest port would stay for at least 2 years- just in case.
November 09
11/12 Had removal of abdominal (IP) port and a diagnostic laparoscopy to take a looky-see if adhesions from surgery were causing my pain (sharp & stabby). While he was in there he biopsied a couple spots up in my diaphragm. I didn’t know he’d done that, but was told everything went fine.
11/17: Oncologist called in the evening with biopsy results. He said “Don’t panic, but we ain’t done yet. Pathology shows metastatic adenocarcinoma in the right sub-diaphragm. It’s barely 3 months since you finished chemo, so we don’t know if it’s recurrent or progressive, but apparently it’s platinum resistant. I’d like to start you on second-line chemo right away.”
What.
The FUCK?
I had just spent the last 5 weeks in “clinical remission”. After 3 months off chemo my bowels were returning to normal (finally}. I had a nice crop of hair growing back. I was actually starting to get back into the business of LIVING, and cancer wasn’t the only thing on my mind any more.
11/23 Another ER visit, this time for severe allergic reaction to one of the 97 meds I was on. I looked like I had a bad lip job.
I got steroids and some other stuff. The ER doc said the reaction was from the Lisinopril (BP med) and to stop taking that. Ooo-kay. Stop Lisinopril, start steroids. Check. My ER Prize for the day was a brand new EPI-Pen, which is great, but it looks like I’m carrying a giant vibrator with me wherever I go. Awesome.
Thanksgiving 2009
Dinner with family at my brother’s house. My mom took me and my sister to San Diego for the weekend. Wonderful memories were made there, and I ate everything in sight. The steroids, ya know.
December 09
12/10: Started new chemo therapy regimen with Topotecan/Avastin, once a week for 3 weeks, then one week off- for 6 months. CA-125 still only 12. Not a good tumor marker for me any more since it's negative and I still have cancer. We’re adding the HE4 tumor marker now.
12/28: Had follow-up chest CT for lung nodules. Looking good, still shrinking. Continue Diflucan (forever). Check.
12/31: Taking a 6 month leave of absence from work. Decided that I just. Can’t. Do it all. Any more. Chemo sucks and I just want to get through it. Happy fucking New Year.
January 2010
exam, chemo, chemo, chemo. Lots of time on my hands. Started blogging again. Cooking a lot. My big adventure out of the house is walking the dog. Woot.
February 2010
Chemo chemo WAIT JUST A MINUTE, DAMNIT. I DEMAND A RECOUNT! OR ANOTHER CT OR SOMETHING. I need to know NOW if the chemo is working. Not wait until 6 months to find out it didn’t. I’m a little testy. I’m worn out and tired and bitchy and scared and fed up and sick and it hurts and I can’t sleep and I can’t remember shit or concentrate and my ears have been ringing for 6 months now and it's maddening, and I get nosebleeds all the time. Idon’t know where I’m at half the time, and don’t remember being there either. God, I hate whining. I hate feeling this way. I am losing my mind.
2/5: Chest pains, extreme anxiety. Xanax didn’t work so back to ER for evaluation. Normal EKG, CXR, CT, labs. Rode the Morphine Express. Happy it’s not my heart but anxiety is gonna kill me.
That's my story so far. To be continued. . .
A Year In The Life
2009 sure started with a bang. I hadn’t been sick in a long time so it was weird when I got that sudden, debilitating joint pain in February. It was so bad one day I had to go to the ER. I got pain meds and some blood tests but nothing was found. I was told to follow up with my PCP and referred to a Rheumatologist. He checked me for EVERYTHING, but nothing showed up on the labs. I got heavy duty pain meds and steroids but no answers. My pain remained. I dealt with it.
March 09
3/04: Had a little throbbing in my kidney so I had an abdominal ultrasound to check for kidney stones. Sure enough! I have kidney stones! Okay, now what?
3/12: Follow up CT scan to confirm kidney stones.
3/16: PCP called, worried. Kidney stones for sure, but incidentally, my ovaries and pelvis were found to have of all KINDS of other things that didn't belong there. Further investigation needed. Blood tests and more imaging ordered. Fuck.
3/17: CA-125 = 383. Fuck.
3/19: Pelvic ultrasound: multiple nodules, complex cysts, unusual vascularity- all “strongly suggestive of ovarian neoplasm with high risk of malignancy.” Fuck.
3/23: CT abdomen with contrast. Vanilla Smoothie Barium. Yum. Off to my PCP for pre-op evaluation. Labs, chest x-ray, ekg. Fuck.
3/25: Gyn/oncology consult. Doesn’t look good. Wants to do surgery TOMORROW. “you’ll have to skip your birthday dinner. Go home and start your bowel prep and only clears until midnight.“ Happy fucking birthday to me. Beer is clear, right?
3/26: Open exploratory surgery. 4 hours. I am now lighter by 2 ovaries, my omentum (whatever that was), my spleen, several lymph nodes, and other assorted nuts and bolts totaling 26 specimens for pathology. My diagnosis was metastatic high-grade papillary serous carcinoma/ Stage 3C/Grade 3 ovarian cancer. I had 2 infusion ports placed for future chemo therapy; an intraperitoneal (IP) port in my abdomen and one up on my chest for IV infusion. I was on the 6 day 5 night Hospital cruise on the Good Ship Dilaudid. I got a blood transfusion. I vaguely remember that. I have a 14 inch scar running down my belly. I've been gutted like a deer.
April 09
4/23: started rigorous chemo therapy regimen: Taxol and Cisplatin/Carboplatin both IV and IP. Eighteen infusions over 6 months. Okay, I thought. Hook me up and let’s get this thing kicked. I’m too busy for this! I’ve got shit to do!
CA-125 was 198. Woot!
4/27: Back to work. Woot!
May 09
Hair today.
5/2: Shaved my head. Weird.
Bought wig. Cute. But too hot and itchy.
Worked as much as possible during my treatments, but nausea and fatigue from chemo was kickin’ my butt. I couldn’t sleep. I got pills for sleeping, anxiety, depression, nausea, pain, hot flashes and more steroids. Whee. (not) My pill collection was growing. I felt like my grandma.
5/11: CA-125 = 113. Steadily dropping- Yay!
June 09
6/6: 3 days after the second IP chemo infusion, I went to the ER with chest pain. EKG revealed an acute MI (heart attack). I won the 3 day 3 night vacation in the ICU and Telemetry units. They didn’t actually blame it on the chemo, but recommended I didn’t use Taxol any more. I added a cardiologist to my ever-growing list of doctors and was prescribed ACE inhibitors, beta blockers, blood thinners, aspirin and cholesterol medications, and referred to cardiac rehab. Woot. (not)
CA-125 was down to 58.
6/23: Resumed chemo therapy- started Gemzar/ Cisplatin/ Carboplatin.
CA-125 was 32. Woot! In the "normal" range!
6/29: started cardiac rehab. Slow stretching, ride the bike, walk the treadmill. Not so bad but I was really feeling the chemo.
July 09
cardiac rehab chemo rehab chemo blur blur hot (summer in Arizona) blur fuzzy hazey hot rehab. . . CA-125 was 22
August 2009
8/3: Back to the ER for severe abdominal pain. More CT scans and a ride on the Morphine Express. No obstruction, thank God, but almost! Can’t do cardiac rehab any more. Right now it’s Just. Too. Much.
Fucked up labs. Great. Low white cells earned me a Neulasta shot. Low red cells won me a blood transfusion! But really, it's AMAZING how you feel after a blood transfusion! (compared to how I was feeling).
8/13: My last chemo. Praise the Lord and pass the biscuits! Started working about 50 hours a week to try to catch up. Have to wait 4 weeks until I can get PET scan. Another Neulasta shot.
CA-125 was 16.
September 09:
9/14: I had my first total and complete breakdown in the parking lot before the appointment for my PET scan. What was up with that? I was finally DONE! This was just the last little thing to do, then life would go on and we could forget about all that. . . unpleasantness. But eventually, all things catch up with you and you need to let it out.
9/16: PET scan results showed a clear abdomen, pelvis, head, neck, bone marrow. Woot! That’s what I wanted to hear. BUT (incidentally, of course).... Also “multiple hyper-metabolic foci are seen throughout the chest” in 5 places. OH COME ON, PEGGY SUE! What’s next? Wolves? (I shouldn’t have asked). A lung biopsy was ordered.
9/18: was back in the ER for chest pain. Labs, EKG normal. Apparently, I’m just stressed out. Ya think? Chest CT showed nodules in my lungs. Um, yeah. I know. Thanks.
9/24: CT/lung biopsy on one of the nodules (there were 5). Biopsy came back as “non diagnostic”, meaning they missed it. Referred to lung doctor.
October 09
10/5: added Pulmonologist to my ever growing list of Ologists. Lab tests performed.
10/7: sent for repeat CT lung biopsy. Before they could stick the needle in, the radiologist said the nodules were smaller than from 2 weeks ago. Really? Awesome! Could just be an infection, you say? That would be SWEET. Now what?
10/12: blood test positive for coccidioidal infection/exposure (Valley Fever). Hmm. I’ve lived in Arizona for a long time and never got Valley Fever. And I didn’t have it back in February when the Rheumatologist tested for it. Apparently, I was exposed to it during the summer while my immune system was suppressed from the chemo.
Valley Fever is a fungal infection that gets into your lungs from spores in the dirt that blows around here in the Southwest. THAT’S what the lung/chest nodules were, an infection! Cool! We can get rid of that, right? Load me up. So I was put on Diflucan 400 mg per day (forever) and told to stop taking Lipitor. Check. Liver function test in a month. Check. Now what? Am I clear? Who is gonna clear me??
According to the pulmonologist: shrinking lung nodules/ CA-125 at an all-time low of 12 =
NO EVIDENCE OF DISEASE, a.k.a. NED.
I did it! I got my dance card! I was dancing with NED! I was in remission! I was cancer free! I WAS FREE. So I proceeded to have my second total and complete breakdown. You really SHOULD be letting that stuff out. Otherwise, you’ll pop.
I called everybody. I posted blogs and bulletins and popped a cork. Time for life to go on! Get back to work! Time to get this abdominal port out! It hadn’t been used for IP chemo since June because of the heart attack. My chest port would stay for at least 2 years- just in case.
November 09
11/12 Had removal of abdominal (IP) port and a diagnostic laparoscopy to take a looky-see if adhesions from surgery were causing my pain (sharp & stabby). While he was in there he biopsied a couple spots up in my diaphragm. I didn’t know he’d done that, but was told everything went fine.
11/17: Oncologist called in the evening with biopsy results. He said “Don’t panic, but we ain’t done yet. Pathology shows metastatic adenocarcinoma in the right sub-diaphragm. It’s barely 3 months since you finished chemo, so we don’t know if it’s recurrent or progressive, but apparently it’s platinum resistant. I’d like to start you on second-line chemo right away.”
What.
The FUCK?
I had just spent the last 5 weeks in “clinical remission”. After 3 months off chemo my bowels were returning to normal (finally}. I had a nice crop of hair growing back. I was actually starting to get back into the business of LIVING, and cancer wasn’t the only thing on my mind any more.
Thanksgiving 2009
Dinner with family at my brother’s house. My mom took me and my sister to San Diego for the weekend. Wonderful memories were made there, and I ate everything in sight. The steroids, ya know.
December 09
12/10: Started new chemo therapy regimen with Topotecan/Avastin, once a week for 3 weeks, then one week off- for 6 months. CA-125 still only 12. Not a good tumor marker for me any more since it's negative and I still have cancer. We’re adding the HE4 tumor marker now.
12/28: Had follow-up chest CT for lung nodules. Looking good, still shrinking. Continue Diflucan (forever). Check.
12/31: Taking a 6 month leave of absence from work. Decided that I just. Can’t. Do it all. Any more. Chemo sucks and I just want to get through it. Happy fucking New Year.
January 2010
exam, chemo, chemo, chemo. Lots of time on my hands. Started blogging again. Cooking a lot. My big adventure out of the house is walking the dog. Woot.
February 2010
Chemo chemo WAIT JUST A MINUTE, DAMNIT. I DEMAND A RECOUNT! OR ANOTHER CT OR SOMETHING. I need to know NOW if the chemo is working. Not wait until 6 months to find out it didn’t. I’m a little testy. I’m worn out and tired and bitchy and scared and fed up and sick and it hurts and I can’t sleep and I can’t remember shit or concentrate and my ears have been ringing for 6 months now and it's maddening, and I get nosebleeds all the time. Idon’t know where I’m at half the time, and don’t remember being there either. God, I hate whining. I hate feeling this way. I am losing my mind.
2/5: Chest pains, extreme anxiety. Xanax didn’t work so back to ER for evaluation. Normal EKG, CXR, CT, labs. Rode the Morphine Express. Happy it’s not my heart but anxiety is gonna kill me.
That's my story so far. To be continued. . .
Wednesday, February 10
Before I started this blog
I have another blog that has the beginning of my cancer story. You can read about it Here if you want, or just cut to the Cliff's Notes in my next post.
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