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, June 30

Just a quickie....

...before I hop on a plane and get outa Dodge-

Saw the onc. PET scan is "good", meaning that some of the lung nodules are smaller, and others are gone. That thing in my throat lit up, and I'm going to get a barium swallow test that the GI doc is ordering. Hopefully, it's just an infection. It makes perfect sense- I have a staph infection in my sinuses, and since chemo did a number on my mouth and GI tract, why wouldn't it affect my esophagus? Right? I'm holding onto that. Still having trouble swallowing, but I'll live.

So- as far as active cancer- the doc says he doesn't see anything new and that he'd only give me more chemo if I begged him to. THAT. WILL. BE. THE. DAY.

Will write more when I'm able- am off to the Midwest on a Magical Mystery Tour. Thanks for all your good thoughts and prayers. I love you all!

Sunday, June 20

DEFCON 3

I'm really struggling here. My PET scan is in 2 days and I'm so stressed out, over-medicated, pissed off, scared, and just plain tired of all this cancer bullshit. Yes- I usually keep a positive attitude, look on the bright side, be optimistic, yada yada yada. But it's so hard to keep my game-face on all the time for everyone else. It's exhausting.

Sometimes I feel really, really alone, especially at home where you'd think I'd get the most support. But the kid still won't talk about it, and the man is still in his protective bubble of denial. Just the last week he said "I didn't know you were at stage III-C! I thought you were, like, stage I! There's only stage 4 left!"

NO SHIT?? REALLY?? UHH, HELL-OOOOO, I STARTED OUT WITH STAGE III-C 15 MONTHS AGO. WHERE THE FUCK HAVE YOU BEEN?? YOU'RE JUST NOW LOOKIN' SHIT UP?? WHAT THE FUCK DO YOU THINK I'VE BEEN DEALING WITH ALL THIS TIME?? PULL YOUR FUCKING HEAD OUT OF YOUR ASS! OH. MY. GOD!!!

I started a new weekly support group in addition to my monthly ovarian cancer networking group at The Wellness Community because a month is too long for me to go without being with people who totally, truly get me and can help me learn some better coping skills, no matter what is going on at home. I'll be taking the kid with me soon and putting him in the teen group, because he definitely needs some help dealing with this. After all that's happened (cancer, chemo, heart attack, recurrence, more chemo, pulmonary embolism, etc.) he thinks I'm immortal, and that nothing will kill me except a beheading. I wish. At least I would see that coming.

I had to have that Just-In-Case Talk with my mom, who also doesn't want to talk about 'that', but understands my need to set some things up. No one will make medical decisions for me. I'm making a Living Will to make sure of it. After seeing what my dad, my ex-FIL and my friends have gone through, I am adamant about not being hooked up, plugged in, zapped, or cut open any more if and when the time comes. Why is it so hard for some people to accept that? Just back me up on whatever decision I make is all I'm asking (demanding).

Everyone says "Oh, you're not going to die!" Well, yes. I am. I'm not being a Negative Nellie (sorry, Kat), either. Everyone dies eventually. I try to explain that the only difference between getting hit by a bus or dropping dead of a heart attack and having cancer is that when you have cancer, you have a LOT more time to think about it. Most people don't get to plan anything. Have you ever tried to plan your own funeral? I don't want to be buried. Cremation has always been desirable to me. I'm donating my body to Science Care. Check it out. I want a 3 day party with bagpipers, whiskey, and a keg or 3. I have a special playlist on my iPod for the occasion. They aren't sad "Arms of the Angel" songs. It's only Rock and Roll (but I like it, like it, yes i do). You'll probably hear one or 20 or your favorites. Eat, drink, be merry, dance, love, laugh. It's what we'd be doing anyway, right? It will be on a weekend, and you're all invited. I'll keep ya posted.





Monday, June 14

Oh, Emergency Room, how I've missed you

NOT!

This month sucks. It's the in-between-chemo and PET scan-waiting-waiting-waiting month. My stress and anxiety levels are high. I'm on too many medications. My jaw where I had the 2 molars pulled just aches and throbs, even 10 days later.

Saturday I woke up, got ready to go to The Wellness Community for my ovarian cancer support group, and popped my handful of meds to start my day. It felt like they didn't go down all the way, like they were stuck in my throat. I kept drinking water but the feeling persisted. I made it to my meeting and a wonderful time with my group. Then I went to my mom's house and hung out for awhile. My chest still felt tight but I was thinking it was just stress and I'd take a xanax after I got home. I did that, and it seemed to improve slightly (the chest tightness), but it was still there. There was nothing else going on with it, like arm or jaw pain so I tried to ignore it. (last year, I had an actual heart attack that started out/felt the same way, like something was stuck in my throat)

The feeling persisted the rest of the day (with several hot flashes thrown in for fun), sometimes worse, sometimes better. It wasn't "acting" like a heart attack, so I held out until I got really freaked out about it. I went to the ER at 9 pm for a cardiac /pulmonary embolism workup: triage, EKG, labs, chest X-ray, chest CT. Tests were negative for heart attack and blood clots. I got a shot of morphine and was sent home at midnight.

Today, the feeling still persists, like there is a . . . . ball of something, or an obstruction in my esophagus/ bronchial tubes. I feel pressure when I take a deep breath. I'm going to give my oncologist a call and then check out a GI doc. I'm hoping it's just STRESS, but will see if I can get it scoped. They don't do that in the ER. I did get a new supply of Eme-bags though.
Wish me luck.

Monday, June 7

I'm Melting! Melting! OOHHhhhhhhh. . . .

I've been done with chemo for 2 weeks now. I still feel like crap, but it eases up just a little bit every day, except for the hot flashes- they come regularly, for about 20 hours out of every 24. Can you actually die from a hot flash? And do people really spontaneously combust? I'm beginning to think so.

It "could" be the chemo exiting my body. Cool! Be gone, Demon! Take your cancer with you! And be quick about it! Or it could be that it's been over 100 degrees in Phoenix lately. Or it could be just the fun part of surgically induced menopause- what a riot! But if I'm flashing, then I'm still living, so I'm grateful for it. No, really. I'll make a list of all the reasons I'm grateful for hot flashes. I'll get right on that.

I wish someone had told me that I should see a dentist before starting chemo, because shortly after I finished it, I had to do it again. Most dentists don't want to touch you while you're on chemo. Six different chemo drugs over a year really does a number on your mouth, but it seemed like in the last month everything just accelerated. Major gum problems, bone loss, and I had to have 2 molars pulled on Friday and a temporary bridge put in. I don't feel like Susie Sunshine today, but at least it's a start to fixing the problem.

That sinus thing I've been going on about; the dripping, bleeding, just won't heal- turns out I have a staph infection in there. More anti-biotics for me: Doxycycline twice a day for a month (with a REFILL). Shit. Doesn't go well with the Coumadin, either, so we'll have to monitor my INR (clotting factor) more frequently. It was pretty low today, so I'm still bleeding Kool-Ade. The dentist said the doxycycline should be okay for the tooth thing, (its usually Penicillin for that stuff) but it's been 4 days and still hurts like hell. I'll be calling him after lunch.

Saturday was National Cancer Survivor's Day. I wasn't able to attend last year because I was in the hospital with a heart attack but this year was good. Rico and the Boyo came with me to The Wellness Community in Phoenix and they got to see where I go for my support group, be part of the drumming circle, hear some music and some stories, and a very nice lunch was provided. Let's just see how many Cancer Survivor's Days I can get under my belt.

My PET scan is scheduled for the 22d, and I'll see the doc on the 29th. No matter WHAT the doc says, good or bad- I'm gonna blow outa here for 2 weeks for a much needed Soul Vacation/Reboot/Wild Windy City-Midwest-Escape to Wisconsin Pilgrimage/Straighten Shit Out/Farewell Tour thing before implementing Plan D, whatever that may be. There will be no doctor visits, labs, scans, tests, hospitals, or anything medical-I don't even want to see a fucking Band-Aid during this trip.

I'm hunkering down and trying to stay off the radar for now. Hunker with me, would ya? Or, better yet- yank me up off my ass.
Love