Update after a long time

How are you doing?

Simple question, but as someone with cancer, its sometimes a difficult question to answer. Do you want a simple answer, or the whole answer? I've struggled with the answer recently. I normally say "Fine" or "Great" or something along those lines. But you know what? I'm not really fine or great.

I've been meaning to write an update for a month or so, and I know there are lots of family and friends that have been looking for one. This is going to be a long read, so settle in, maybe grab a tissue...

I'm not going to lie. It's been tough. My CA 125 number was climbing even before finishing the previous treatment cycle, so that's not a surprise. But it continues to climb, and thats what I hate. I hate having that number bigger and bigger every time they draw blood.

Here are the 10 most recent CA 125 counts (remember normal range is 0-38.1):
Sept 23 - 274
Sept 3 - 194
Aug 12 - 133
Jun 28 - 78,1
Jun 6 - 73.3
May 14 - 57.3
Apr 22 - 52.3
Mar 29 - 32.1
Mar 7 - 16.3
Feb 9 - 12.1

I have been trying to live my life as normally as possible - visiting Maryland/NJ, Taiwan and Singapore this summer, and then getting to staff at the Pokemon World Championships in Hawaii. I was also able to staff at PAX West (Seattle) in the Pokemon PlayLab teaching people to play Pokemon.

But under all of it is my cancer. I take a daily chemo pill (Cyclophosphamide) trying to keep it at bay. I take 2 different meds for the high blood pressure that I have from the treatments. I have an infusion every 3 weeks (Bevacizumab). Blood drawn every 3 weeks. I also now have to pee in a cup every 3 weeks to keep an eye on my kidneys... We have added in an additional infusion drug to try and treat it - Pembrolizumab, which is an immunotherapy drug. It is supposed to teach my body to fight the cancer itself.

The cancer causes fluid buildup in my abdomen, and around my lungs. Before, this would happen but then go away when we started chemo. We aren't starting chemo, so the fluid isn't going away. I have had it drained from around my lungs twice now, and it really helps. Otherwise I can't even walk up the stairs without being out of breath. I hadn't realized it affected my breathing until I was in Hawaii - I thought I caught something... So now I have to keep an eye on that and go in to drain fluid so I can breathe. I'm hoping they can just open a standing order so I don't have to reach out to the Oncologist team every time, that adds a week or more before I can get in and have it done because of putting in the order and getting it approved...

I have been looking at other ways I can help fight this cancer because I want it gone from my body. I am going to change my diet to be plant-based, mostly raw, and as much organic as possible. If I can help my body by not putting more chemicals and junk in with my food, its at least something my body doesn't have to deal with. I love smoothies and salads, so I'm ok with it, and I was already not eating meat, so I just have a few more changes until I'm there... But if you are local and want to meet for food, please understand if I find someplace that serves salads :) I have been eating some cheesy things and some seafood this week, but I'm also incorporating smoothies and salads. Now to cut the other stuff...

My surgeon still has me check in with her often, and she has some other ideas we can try. Some treatments work better if you have certain tumor markers. She has sent some of my tumor samples from the surgery 2 years ago for more testing to see how it will do against a new treatment option. We will give the immunotherapy a few months, see if it helps, and if not, maybe try something new.

Recently, its been more emotional for some reason. I know ovarian cancer has no cure, we just try to treat it so we can live longer. Sometimes it just hits me harder that I do have a time limit. I know everyone does, but I have a shorter one than most, unless I can find something to beat it up and out of my body. I've gotten hugs and been able to vent and that has helped. Now it's time to turn to the positive and fight. I'm focusing again on living.

If you do ask me how I'm doing, just let me know if you want the short version or the truth 🥰 and don't be surprised if tears come with the truth 😞

If you are reading this, know I love you. I would love it if you could send me good positive healing vibes and virtual hugs. I need them all now more than ever.

Love to you 💕