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.

The Power Of Three

*Three is a mystical number that shows up repeatedly in mythology: three fates, three muses, three graces. Three is a prime component of fairy tales: three wishes, three little pigs, three bears.

Three creates a series, a pattern of cause and effect.

There are three stages of truth: first a concept is rejected, second it is violently opposed, third it is accepted as self-evident.

Three is a basic structure of life: carbohydrates, protein, fat; electron, proton, neutron; past, present, future.

Three is a basic structure of stories: beginning, middle, end.  *from squidoo

Three is the number of times I've had to face cancer and make life-altering decisions about treatment. Apparently, there are only three treatment options available in conventional Western medicine: surgery, chemo, radiation. I've now been offered these choices for a third time. 

Let's review:

I got cancer

I had surgery

I had chemo

I had heart attack

I had more chemo

I had a recurrence

I had more chemo

I had a pulmonary embolism

I had more chemo

I have a new recurrence-
Third time the charm?
Or three strikes and I'm out?

I have three words for you: NO MORE CHEMO. 

Here's three more: NO FUCKING WAY.

And three more: I AM DONE.

Chemotherapy has almost killed me twice. It has caused me more health problems and long term side effects than the cancer itself. My cancer is persistent and progressive. Chemo may damp it down a bit, but it will not cure me. It will only cause more damage- OF THIS I AM SURE. I still have a kid at home, and I need to be fully HERE for him while I'm still here.

So, what now? you ask. 

After much research, soul searching, and a kick in the pants by some of the best alternative, naturopathic, holistic friends and healers alive I've decided to surrender to Mother Nature and God and go the natural route to detox, cleansing, and immune boosting, as well as fully embracing the mind/body connection towards healing. After explaining it to my family, I'm getting full support from them but so far, I've heard: "You're crazy!", and "What the fuck?", and "You're giving up???" But more and more, I'm getting: "It's about time!", and "I'm in!", and "I can hook you up with so and so . . . ".  

This will be a big transformation for me, and there is a lot involved. I've been a meat-and-potatoes girl all my life; raised on cows milk, processed foods,  and preservatives. I've pumped more chemicals and pollutants into my body than should be allowed. I lived in highly industrialized places. I smoked. I drank. I love fat and gravy. And sugar. And those are all just PHYSICAL THINGS that do so much to fuck up our immune systems so badly to invite horrible diseases like diabetes, heart problems and cancer. I haven't even begun to crack the emotional aspects or the spiritual deficits in my life.

I think I shocked my support group at The Wellness Community with that one last night, but they rallied around like they always do, no matter what.The people in my group are in all stages of the cancer journey; some newly diagnosed, some currently in treatment, and some in remission. They seem to be of the same mind that there has GOT to be other ways to treat cancer besides surgery, chemo and radiation, and are interested in helping me find it.

I'm going to be a busy girl. I have a lot to learn, and I WELCOME your thoughts, ideas, connections and experiences in alternative, natural and holistic healing because for me, THIS way is now the ONLY way.

Remember: It's not nice to fool Mother Nature.

Love,

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

Another Graduation

You'd think I would've been ready this morning, having been up since 3am all jacked up on steroids, hot flashing and having a major anxiety attack. I had to go outside and sit on my patio for awhile to cool off and try to get my Zen on with some Xanax and herbal remedies. I had to take another batch of steroids at 6am in prep for chemo today. MY LAST CHEMO. FOREVER, DAMN IT!

So we took dog out (Rico did), got the kid up and to school (Rico did) while I dawdled in the shower, lollygagged getting dressed, and generally stalled for as long as I could before getting out the door for the 25 mile drive. Wait! I need to draw my eyebrows in! I need to use the bathroom! Where are my lucky blue Chucks?? Is my iTouch charged up? Wait! I gotta put Lidocaine on my port! Is it time for another Xanax yet? Check the A/C. Make sure the windows are closed. Fill the dog bowls. Switch the laundry to the dryer and start another load.

We finally hit the road (when he gently dragged me out the door) and here I am at Club Chemo with 9 other women today, all of us at various stages in our treatment. Today, being my last treatment (the 2nd time around) I've got the Graduation Ribbon on my IV pole. Here, patients sign the ribbon after the last chemo. There are 3 ribbons that hang on the wall, all filled with prayers, jokes, signatures and love notes to the Oncology Team. Every part of every ribbon is signed, all the way down each of the 12 strands of 4 foot tail. This one is a brand new ribbon and I'm the first to sign it. I think I've just earned a B.S. Degree in Chemotherapy.
Another oncology office has them ring The Bell, and another place plops a tiara on your head, wraps a feather boa around your neck, presents you with a dried giant fake bouquet and tells you "Now, take your Walk!", like you're Miss America or something. I like that. Finishing chemo is a big deal.

I'm so glad this is almost over. I need a break from chemo in the worst way. In 4 weeks I can have he PET scan. Now, it's just a waiting game again. Limbo Land. I'm gonna just spend the next month eliminating this toxic shit from my body, then hopefully all those dreadful side effect will abandon ship. I can't wait to get off all these meds. Will it even be possible?

What will the PET scan show? Will my labs be good? Will he have to go in and look around again? Will I be able to go back to work? What if....? These questions, and more will be answered next month, and I AIN'T GOING THERE TIL I GET THERE.

For my graduation speech I'd like to say:
It's been a long, strange trip, Cancer.
I've worked very hard over the last year
to get the best of you.
So far, I've kicked your ass. TWICE, bitch!
You better stay down! I'm warning you!
FUCK YOU, RECURRENT METASTATIC SEROUS PAPILLARY
OVARIAN ADENOCARCINOMA.
I HATE YOU.
FUCK OFF AND DIE.

The countdown begins... (again)

Only 3 more chemo infusions to go. I'm getting #1 right now. I had to call out my cheer leading squad to help me through this next month. When I did chemo last year, the last month was the worst/hardest/had more side effects. 4 weeks after the last chemo I'll get the PET scan and see what we see.

I'm so tired of all this. Thank you to my docs, nurses, girls, friends, family, and everyone else that prays for me, distracts me, makes me laugh, brings me chocolate, and helps me find my Zen. Thank you. I love you all.

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.

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,

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

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.

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. . .