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.

What's in a number?

Hmmm, where did we leave off? Oh yeah, the moving, the breakup, and the yada yada yada. I finally got the moving done. Well, let's just say all my crap is outa the apartment and partially in storage and partially here at my mom's house. My mom is having the floors redone so I'm not going to move my big stuff in here until the new carpet is in. That stuff is heavy, and I'm only moving it once (more).

The breakup is done. I swear, that was the longest breakup I've ever had, with all the moving and whatnot. We've kept it civil, we're amicable, and we'll try to stay friends. Maybe I'll get over my resentment now that I'm not depending on him for anything.

On to the yada yada yada. Yeah. I really don't want to go there, but I must. I saw my PCP last week to talk about weaning off some of my meds and to check out some pain I've been having- not just the upper abdominal thing that I think is nerve damage/scar tissue, but a new, lower, pelvic pain. I was trying to think what I had left in there that would hurt so much; my bladder? my colon? This pain has gotten progressively worse over the last month, and I'm sure moving boxes and furniture hasn't helped it much. But this pain is beyond strained muscles. And I'm actually FEELING lumpy-type things down there. My PCP said it "may" be a hernia that developed after my surgery last year. But he doesn't think so.

He's ordering a new pelvic/abdominal CT scan for me- I'll get that next week. He wrote up a referral to the new oncologist I need to see, since I have no insurance now and have to change docs. I'll see him on Thursday. He did some labwork.

My CA-125, which has been very low for a year, is now at 205. Are you ready for Round 3? Plan D? FUCK. ME.

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. . .