Update from Taiwan - September 11, 2023 (imported from Facebook)

So it has been a long while since I've posted about my ovarian cancer. I guess I didn't want to because I've been trying not to think about it on my trip... 

My hair is growing, and it's getting curlier 😳 I don't really like the curls, and they really come out when I'm all sweaty 😜 which is all the time in Taiwan 🤣 I look back at photos from my last trip to Taiwan and Japan in late Jan, early Feb and I didn't really have any hair... 

So here it goes... I get blood work done every 6 weeks with visits with the oncologist or his PA every time. I see my surgeon or her PA every few months for a physical exam (think your annual gyno exam, but I get one every few months). Since I no longer have any internal female organs (ovaries, tubes, uterus and cervix), I don't need pap smears anymore and no more periods 🤣 But I'm in menopause 😕 They also removed some lymph nodes during surgery, so they are always checking for swelling. I've been fine so far, but I do keep an eye on it. 

At my July 24th checkup, my physical exam went great and so did my oncologist chat about how I'm feeling (he doesn't really physically check anything other than vitals). I've adjusted to the daily medication (Zejula) I take to hopefully keep the cancer gone (remember it was giving me insomnia really badly when I started at a higher dose in Feb). The regular bloodwork all looked normal. However, we test the Cancer Antigen 125 (CA125) to look for ovarian cancer indications. 

Here are all of the values from when they have tested it (it's not something normally tested during routine bloodwork). Normal range is 0.0-38.1. 

7/11/22 was 624 😱 before surgery 

8/12/22 was 71.6 after surgery and 1 chemo

9/23/22 was 12.4 

10/14/22 was 9.9 

11/4/22 was 8.2 

12/7/22 was 8.3 

2/15/23 was 7.1 

3/14/23 was 7.9 

4/27/23 was 7.9 

6/8/23 wasn't done (they didn't draw enough blood, didn't notice the order for it) 

7/24/23 was 38.9 which is just over the normal range, and way above where it had been for a while 

Since this visit was about a week and a half before I was going to be gone for a month and a half, we were all a little worried. They had me get a CT scan on 8/1 to compare to the last one when chemo was all done. The CT scan showed a nodule and some ascites. 

Here is what the doctor checking the scan wrote:

 - Development of trace ascites with 10 x 14 mm midline pelvic soft tissue peritoneal nodule/implant suspicious for malignancy. 

So that's not good... and I was flying out first thing on 8/4 to Taiwan and Japan, returning on 9/18... 

So the oncologist tried to reach the surgeon, but it turns out the surgeon was on vacation until after I left. So the oncologist and his PA said that as long as I was feeling ok, to go on my trip and enjoy myself. If something starts feeling off, or pain, or I notice the fluid build up, then contact them. They also said to continue on my daily meds in hopes of keeping it in check. When the surgeon returned from vacation, she reviewed the scan and recent results. She said we will retest the CA125 when I get back and go from there. Obviously if I notice something off to contact them. 

So I'm still feeling fine and enjoying my trip in Taiwan. I'm getting lots of walking in, and lots of good food. I had a blast working at the Pokemon World Championships in Japan and seeing so many of my friends I hadn't seen in a while. 

I'll be home next week and my next appointment and bloodwork is scheduled for 9/22. I'll definitely post after that checkup to keep you all up to date. 

Just a reminder to everyone to go to the doctor if something feels off. And if one doctor just writes it off as acid reflux, get a second opinion...

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