What a week

Wow. I can't believe it's been a week since my last post! I'm having a hard time staying awake for any length of time, being on morphine and muscle relaxers all the time- even though I still don't sleep at night. I escaped from the hospital on Wednesday after almost having a throw-down with the hospitalist and the nurse manager for the floor. That doctor pissed me off.  When he wasn't being condescending to me he was raising his voice to talk over me. You wanna see me go ballistic? Treat me like I'm an asshole who doesn't know what I'm talking about and see what happens.

That "doctor" is apparently new to the hospital group. My nurse told me that the doc hadn't even gotten a report on me before he busted into my room and told me he was sending me home right after my ureterocsopy. Um, excuse me but I just got a whopping shot of morphine 2 minutes ago, so of course my pain is minimal. The urologist has other plans for me. He also couldn't or wouldn't give me an answer on why my pelvic CT scan didn't show the gigantic tumor. He scoffed at the picture I showed him of my tumor on my previous PET scan. "When was that scan done- a year ago?" he sneered at me.  I said "NO, motherfucker- it was a MONTH ago. What is your problem? Why can't you give me a straight answer? And why has it taken 3 fucking days to get the radiologist to look at it?" By this time, my son was sitting very close to me and kind of rubbing my shoulders (actually to grab me when I went to lunge for the stupid shit doctor), and several nurses were seen huddling in the door. I guess they're not used to patients ripping into the doctor like that.  This is where the nurse manager got involved to diffuse the situation.

Anyway, suffice it to say that I survived this episode, and so did the doc. I have a follow up with the urologist tomorrow to take the stents out of my ureters. Then I see the oncologist on Wednesday to discuss my "absent" tumor, get some blood work done and maybe another scan. I also want this port out of my chest. I now have 5 new meds: morphine, muscle relaxers, ditropan-which stops my bladder from spasming, senna to keep the mail moving (which it hasn't in a week, God help me) and Flomax- which they give to old guys for prostate problems. It also relaxes my ureters or something like that, so if any more stones wanna make a break for it, hopefully they will just fall out. Ya think?

Thanksgiving was wonderful. We actually had 2, since my new sis-in-law had to work on Thursday. There was a delicious dinner here at mom's house, then a big bash at my brother's place with SIL's family included.

 My "babies"

THE baby

On a sad note- one of my support group buddies passed away last week. She wasn't very far into treatment and had only recently had surgery, but went downhill quickly from there. Complications took the life of a very beautiful, very young, and very much loved daughter and friend.  We attended a memorial service for her on Saturday. 

R.I.P. Amy. You were loved.

What the hell?

Who would believe that something the size of a raisin could fell an Amazon Girl like me?

I woke up in excruciating pain at about 2am this morning. It felt like a very large hand got ahold of my kidney and was squeezing it like a sponge. I waited a bit to see if it would go away, but 5 minutes later I was waking my mom up to take me to the hospital.

Once at the hospital it was determined that I had a rogue kidney stone trying to make it's escape. Remember how at the very beginning of my cancer journey it all started with kidney stones? The very ones that nobody ever mentioned again after discovering the pelvic masses during the CT scan. Well, hallelujah, my kidney stones are finally on the front page again.

I'm still at the hospital. I've spent all day trying to pass the fucker. I'm sloshing with morphine, toradol, flomax, IV fluids and water, and I'm gonna get some flexeril soon for my aching shoulder muscles (from being hunched in pain for hours). The urologist said if I don't pass it by morning they will perform a ureteroscopy where they stick a scope up where one ain't never been stuck before that goes all the way up the ureters, where they will blast the little bastard with a laser. Who knew they did such things? Apparently I missed the lithotripsy wagon, which is only here every two weeks. Lithotripsy is where they use ultrasonic waves (on the OUTSIDE of your body) to pulverize kidney stones into dust, making it easy to pass them. Just my luck they were here YESTERDAY. Fuck. Are they like gypsies, I wonder? The lithotripsy team? Just passing through town putting that magic wand on sufferers of ureterolithiasis? Why wasn't I notified? 

Ah, Miguel is here again. Beloved, devoted Miguel, my nurse for the day. He is very generous with the pain meds, my Miguel. Will let y'all know how the stealth scope goes tomorrow.

The struggle to appear normal

I am worn out. I know I am neglecting some of those who love me and want my attention, and I'm sorry I'm not available or too tired. But I am so wrapped up in trying to save my life that I have little time for anything else. I can't do all the stuff I want to do. Yesterday I had 3 events I wanted to do: a thing at TWC, my high school reunion, and a friend performing at a comedy club. Back in my Other Life, I would've been able to hit all 3 but now I could only pick one to give it my full presence. I picked the reunion. I had the BEST time! I'm so glad I went. I ate an apple, a salad, had 3 beers and 4 peanuts. Vegan all the way, baby! LOL

I really struggle to appear "normal". To look at me you wouldn't know I was sick at all. Guess I've gotten really good at faking it but I am in pain all of the time. I don't move as quick as I used to. Shit, I can't do most ANYTHING like I used to. I'm back to frequent doctor appointments and tests. My money situation sucks. Insurance doesn't pay for naturopathic doctors or treatments so it's all out of pocket. My kid doesn't hate me anymore but is still not happy living here at Grandma's house. I don't blame him. I wish we lived back at our house, too.

There are many many good things in my life. I have my friends, my family, my support group, new docs, a new church, my blogger buddies, my dog, I'm breathing, I have a Plan, and the sun is gonna come up tomorrow. Here's to another week of sucking it up and moving on.

This, That, and The Other Thing

Man, I really should blog more. So much happens in just a few days that even I can't keep up with it all. First of all, let me say this: I HAVE BEEN A VEGAN FOR 40 DAYS! WOOT!

whoa. I think I need to go lie down for awhile. I just freaked myself out.

I decided not to participate in the clinical trial for XL184. Pill or not, it's still chemotherapy with all the nasty side effects and debilitating, life threatening complications. I am all for advancing modern medicine and helping future generations of cancer victims, but I am not going to sacrifice myself for it. Thanks, but no thanks. I'm staying on the path I've chosen and am not going to stray off of it. Bad things happen when you leave the path.

I had a great support group meeting at The Wellness Community the other night. It's really amazing the amount of information we share. A few of them already integrate naturopathic/homeopathic medicine into their lives and treatment regimens. They have great things to say about all of it. They gave me a couple names- one was the naturopath/oncologist that I'd gotten a week ago from the doc at Pinnacle, and one from the Southwest College of Naturopathic Medicine Medical Center.The second guy is a long time cancer survivor- he had stage 4 colon cancer and lived to tell about it. He had done conventional treatments with surgery, chemo and radiation and didn't have much luck with those. I figured that he'd be the perfect one to see, since he knows, on a very personal level.

I spent some of my sleepless night going through my giant stack of medical records to put together a packet for my appointment today. Good thing, because I was rushed this morning- I'd had an intimate love affair with the snooze button on my alarm clock. When I got there I had to fill out a thousand page questionnaire  (I kid) regarding everything from the kind of lotions I use to whether I'd eaten school paste or lead paint chips as a child. A homeopath needs to know these things! Right on time the doc himself came out to get me. I don't know what happened to me, but as soon as I sat down across the desk from him and he smiled at me so gently and asked me why I had come- I burst into tears! UN-BE-LIEVABLE! What a waste of a fabulous makeup job. After my waterworks subsided, he spent the next 3 hours with me going over every single thing on my intake form and digging deeper on several issues such as how I deal with anger, my triggers, stressors, habits, fears, and got very specific on pain details.   

He said he could help me, and that what I'd already started was a wonderful first step on a long road to health and well being, which is made up of a low-fat VEGAN diet, exercise, meditation and supplements. How simple is that? I don't know diddly about supplements, but I'm about to learn a whole lot. Why is it that some have trouble grasping or ignoring these simplest of concepts? Large parts of the world have known these things for thousands of years but modern medicine is the last to embrace it. "Let's hack it-burn it-poison it" instead of  "let's fix it".

He started me on a homeopathic plan and gave me some things to read: The Spectrum by Dean Ornish, M.D., Beyond Flat Earth by Timothy R. Dooley, N.D., M.D., and The China Study by T. Collin Campbell. I am to start a supplement called Nux Vomica, an Eastern remedy which won't cure my cancer but will treat other issues I'm dealing with. We talked about Naltrexone.  It sounds promising. I have a lot more research ahead of me if I can just get some sleeeeeeeep.......

Wake me when it's over, please

After running around with my mom all day, this evening I went to TWC for a seminar called Sleep and Dream Health in Cancer Care. I am desperate to sleep so I thought I might learn something about insomnia, sleepwalking, sleepEATING (apparently), nightmares, and all those other sleep disorders I suffer from. I've been waiting all week for this class.

I get there. There are a lot of people there. I sign in. I sit down. The dude starts talking and showing slides. I don't know if it was the old back-in-school atmosphere- with the low lights and the clicking of the slides, but about 10 minutes into it my eyes were crossing and my chin kept slamming down onto my chest. I think I even snored. 

I thought "ohhhh shit. I have to go before I fall on the floor". I gathered my things,and headed out the door. The lecturer calls me out and says "Am I boring you?" I said "No! I've been waiting for this all week! I just can't stay awake long enough to hear it, but if you've got a couch nearby where I can sack out, I'll gladly stay". Some trooper I am, huh?

I came home and made some soothing chamomile and lavender tea. Now here I am on the fucking computer because I'm wide awake. I can't win.

Meanwhile, back at the ranch. . .

I got my packet from the new onc with info on a clinical trial he thinks may be beneficial to me. The trial is for a drug called XL184. I have a lot of information to process before I make any decision. I was very impressed with this new guy. When I asked him his opinion on alternative medicine he said "Patty- I couldn't sit here and talk to you about experimental treatments without having an open mind about other treatment options", and he gave me a card for a Naturopathic Oncologist that he consults with. He is all for things that make his patients feel better, and all the patients he's referred to him have reported just that.

My pain meds have been upped to a Fentanyl patch. I'd been taking dilaudid all week, with little relief. Neither seem to do much for my pain, but instead make me tired and loopy. Will have to discuss this with oncologist. My shoulder is still whacked out. I'm waiting for the MRI authorization to go through, and will start physical therapy next week.

I think my get up and go musta got up and went. I'm so tired.

 Ain't it always the way? The good, the bad, and the ugly- battling it out. At least for me, it is. I'll share the good stuff first: 

Tomorrow (today,actually) I get to attend a conference on Ayurvedic Medicine. It is a free program sponsored by the Ovarian Cancer Alliance of Arizona. I am so lucky that there are so many programs in Arizona for cancer survivors! And this one is right up my alley; exactly the kind of stuff I'd like to integrate into my healing program. I'm sad that I have to miss my monthly ovarian cancer support group at TWC, but half of us are going to the conference anyway. There's free food involved. : )

The Boyo and I went to the kid2kid thing again on Tuesday night. We met a couple new families, diagnosed a month ago. I wish I'd been able to get us started with TWC within a month after diagnosis! But better late than never. It's been most helpful to all of us.

I'm doing great on the vegan transformation. Not totally on juicing yet, and still cooking a little bit, but very soon will begin my juice fasting and go completely RAW.The good part is that it's starting to work.

The bad part of the vegan/juicing/detox is that it's starting to work. My face is breaking out. I'm so tired I can hardly keep my eyes open, but I can't sleep for shit. I'm cranky. I'm eating/drinking so many leafy greens that it affects my INR values and my Coumadin has to be adjusted weekly. It's all over the place. 

The ugly part is the pains I get in my liver, kidneys, bladder & bowels as the nutrients in the juices do their work of detoxing. Also ugly is the horrendous pain in my shoulder that causes me to cry in my sleep when I roll over on it. I didn't do anything to it, it's just fucked up. I got some Lidoderm patches to put on it, and will schedule an MRI and some physical therapy soon. Whee. More scans and more doctors.

Worst yet is the pelvic pain. My oncologist had to pull out the big guns since the vicodin, percocet, ultram, and about 5 other things aren't helping any more. He wrote me a Rx for Dilaudid to take as needed. My other option for pain control was to go on full time morphine, which would effectively shut me down. I'm not quite ready to be shut down yet. I've got shit to do! But the dilaudid shut me down the other night and I wasn't able to go to my weekly group. bah.

The Big Ugly: my CA-125 is jacked up to 1,000 from 205 two months ago.

My oncologist is still pushing more chemo and says I can change my mind any time. He is really a nice guy, and wants what (he thinks) is best for me. He strongly encouraged me to keep my appointment next week with Pinnacle Oncology to see if I qualify for any clinical trials. I promised him I would- It can't hurt to hear what they've got going on. I may be stubborn but I'm not stupid.

Maybe there is a non-cyto-toxic compound they are trying that comes in a pill form. Or new stuff that only kills cancer cells and not every other damn thing in your body. Or I can gnaw on the bark of the Chinese Happy Tree. Hey, I'm even willing to fully embrace medical marijuana. I knew there were medicinal purposes for pot! sigh.. the sacrifices I make...  Yesterday we got a 50/50 vote on Prop 203. Can you believe that? But apparently they are still counting votes so it ain't over yet. Bite me, Russell Pearce.

I'm gonna be really pissed if I die before they pass that law.

Better Days

Well, thank God last week is over! Whew! Didn't know if I was gonna make it through all that, but with the love and support of God, my family and friends, I persevere.

I'm spending a lot of time researching alternative medicine, nutrition, veganism, juicing, detoxing, etc. and also spending a lot of time at the store combing the aisles for organic items, pondering the flavors and uses of strange produce, looking at supplements, and examining the labels of just about everything in the store. I've come to the conclusion that people will buy ANYTHING if it's packaged prettily, has ponies or Hannah Montana on it, or is covered in cheese or chocolate. Me included. Jeez. This is what I was buying for my grandbaby when she'd come down to visit: She loves these!

Really. What the fuck IS all that stuff?  Or foods labeled "All Natural!", "100% Juice", "No Trans-fats" - well, while those items may actually have those qualities, they are usually loaded with tons of other shit I don't need. "Enriched", "Fortified", "Emulsified", "Pasteurized, processed cheese food". HUH?

I've been "eating the rainbow" for the past 3 weeks. Hopefully, this will also fix my cholesterol levels, which , right before I started, were a whopping 347 for total cholesterol,  Triglycerides at 507 (should be under 150), and HDL (the good kind) at 43. It should be over 45. I know, right? "Pasteurized, processed cheese food", my ASS! Here's what my sideboard looks like daily now:

Every single thing that goes into my mouth now has some sort of cancer-fighting properties. Super-Foods, indeed! I found a really cool vegan restaurant/ tea and herb shop called Chakra 4 Herb & Tea House in Phoenix- not far from where I live. The food was fun, colorful and tasty. The tea shop has hundreds of teas, spices and herbs and bona-fide herbalists to mix it up for you. I'm exploring Essiac Tea, along with other interesting concoctions.

I got my juicer! My friend Shannon Rose  put out the call and people responded. By the generous donations of our friends, she was able to send me the mother of all juicers; The Kempo Green Power Juicer. Many thanks to my benefactors! I love you guys. The Boyo and I have been having fun with it.

Smarty Pants

That's right. We bad. Uh huh.

Kale, carrot, tomato, apple juice.

I know- gonna take some getting used to!

And I actually got my mom to try some today.

 She didn't die. Yay, Mom!