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. . .