It’s Not Working

I’m searching my brain for the words I want to say. And they’re not there. So let’s just start with some numbers and a recap.

Recap & Results |February 16 Mom’s CA125 was up to 62 (we want below 35). Mom then started her PARP inhibitor drug the last week of February. This is the same drug she was on in October and went off of December 4th because of the side effects and the fact that her CA125 was in normal range in December (it was at 31). She had a follow up blood draw April 6th to make sure the PARP inhibitor was working. We got the results of that blood draw this morning and her CA125 is now at 140.

The Plan | So she talked to her scheduling nurse and she talked to the doctor and here is the game plan. CT scan on April 19. Appointment with oncologist April 24th. Double dose of chemo April 25th. Yup we are back to that chemo life.

Thoughts | My head is just kind of spinning and my brain is just trying to process the information.

Thank you to everyone that thinks of us or prays for us or reaches out. Your love and prayers really mean so much to us.

An Anxious Mind

I would like to preface this post by saying my physical health is fine. I just wanted to share a look into the mind of someone with general anxiety disorder.

Anxiety can be an interesting thing. It can cripple you and make you question yourself. It can make you question others. And it also forces you to make choices in the case of this incident.

I had been experiencing some pain. The thought of calling the doctor made me feel nervous. I don’t like calling places. I don’t like the idea of being dramatic because of some pain. I also don’t like the idea of letting something go until it intensifies when I could’ve done something about it. If you can’t tell already I overanalyze everything.

I called. I went. I got tests done. I felt at peace. The peace of knowing I conquered one step and I did my part to be proactive about my health.

Waiting for results is never fun but I felt good that I took the step and went. After I went I began questioning myself. Was I being stupid for going? Am I being dramatic? Will people think that I think I have ovarian cancer just because my mom does? I’m not sure who I thought these people were considering the only people that knew about this were my immediate family and they all encouraged me to go. Eventually I chilled out.

A week went by and the office called. I had a small cyst and we were going to make sure it went away on its own and do a follow up in 3 months. I felt good, I felt calm. Then I decided to read my ultrasound report…I am an investigator by nature and that report contained a lot of language that I had to look up. And even when I looked it up it wasn’t EXACTLY the language the report used so it wasn’t much help. Also there was a nodule…no one mentioned a nodule. Basically I began to drive myself crazy.

My mom suggested I call the office to get a better understanding from the doctor. Sure great I’ll call…minus one little thing…I didn’t want to call. She’s a doctor and I’m sure she’s busy and I’m sure I’m just being silly. But I wasn’t sure that I was being silly. So I had a choice. I had to weigh the anxiety. Was the idea of calling worse than googling cysts and nodules for the next 3 month?

So I called and I rambled and she told me more about my cyst and that it didn’t look concerning. And that we will look at it again in 2-3 months and go from there. And I felt better. I felt slightly annoying for bothering her. But I only have one life and I don’t want anxiety stand in my way of getting all the information I need to feel confident moving forward.

Go With Your Gut

On December 4th Mom stopped taking her PARP inhibitor drug due to side effects and her CA125 had returned to a normal range. The deal was if she had a clear scan the first week of January she would go into surveillance mode.

Her scan was in fact clear and she went into surveillance mode. What surveillance mode entailed was CA125 blood draws every 2 months or sooner if she didn’t feel well. It also meant she wouldn’t be taking any medication for the cancer because it appeared to be under control.

Mom didn’t like the idea of waiting two months. She has high grade serous carcinoma which means it grows fast. She wanted to stay ahead of the game. So she went with her gut and got the blood draw at around a month. On January 27 her CA125 went from 31 (on Dec 18) to 36. Because it went up they sent her for another blood draw on February 16th. We got the results today and her CA125 is at 62.

They will do a complete workup on Friday and she will resume taking her PARP inhibitor. We are going to remain hopeful until we are told we have run out of options. And we are definitely not there yet. So the rollercoaster continues and we get stronger with every turn along the way.

Shaken But Resilient

The past 18 months have been a wild ride filled with lots of ups and downs. Just this month was a rollercoaster. Mom stopped taking her PARP inhibitor December 4th because a blood test revealed it was affecting her kidney function and causing her body pain. She has a CT scan on January 10th and the results of that scan will determine her treatment plan moving forward.

Originally her scan was scheduled for December 29 but then her retina became partially detached and she had to get surgery December 27. So laying for a CT scan isn’t the best idea after the surgery she had.

December 24th she mentioned she was seeing floaters. At 10pm December 25th I received a call from Mom saying she was heading to the ER with Dad because the vision in her right eye had gotten much worse. At 4am on December 26 we got the news that it was most likely a detached retina. After seeing many ophthalmologists it was confirmed that she had a partially detached retina. She went into surgery December 27th and surgery lasted 2hrs. Currently she cannot see anything out of her right eye except close up shadows. Overtime her vision should become clearer.

Apparently she was born with weak eye muscles and will eventually also need surgery in her left eye. I wish I could put into words what I feel but I can’t. It all happened so fast. I am grateful that it wasn’t something life threatening but her going to the ER Christmas night has shaken all of us. We are a very grateful and appreciative family. And honestly we haven’t been through as much as some people. But unfortunately that doesn’t make it any less scary when she’s heading to the ER and the fear of losing her is very real to all of us. But we are tough and we will continue to roll with the punches and hit back when necessary.

Better As We Go

Alright, I’m just going to cut to the chase because I hate waiting.  On Thursday we finally saw mom’s CT scan and she spoke to the nurse.  Her abdominal/pelvis CT revealed there was no evidence of metastatic cancer and no changes since her last scan in June.  On her chest CT there was a tiny pulmonary nodule but that has been there before and has not grown.  The results from her October 27th blood draw revealed her CA125* was down to 51 from 54 on October 16th.  She has been consistently taking her PARP inhibitor at a lower dose since October 26th and the side effects have begun to lessen.

It was a longggg two weeks waiting for these results.  The shock of finding out her CA125 was out of normal range and double knocked us on our butts and we sprung right back up.  We rallied, we went into cancer mode.  Everyone of us stepped up and assumed our roles to check in with one another and protect each other.  And because we’ve become old pros we did it better than we did the first time around.

We felt scared and sad but we still lived.  Mom painted at Lex’s and went shopping and decorated for Thanksgiving.  This is our life now.  She’s going to get test results that are scary and we are just learning to live while we wait.  So a big thank you to all of our friends and family for all the love and support!

So what is next…a blood draw Monday to see where the CA125 is at and then in 3 month she will have another CT scan and an appointment with her oncologist.

*CA125– I just wanted to give a little side information about the CA125 because I talk about it a lot in these posts. CA stands for Cancer Antigen. It’s a protein that is found in greater concentration in tumor cells but can also be found in other cells too.  That’s why when the CA125 is elevated they have to do other screening tests to determine the cause.  A normal CA125 is 0-35.  Everyone has their own version of normal.  We think mom’s normal might be 18 because that is the lowest value she has reached. The thing about the CA125 is the number doesn’t indicate the amount of cancer present.  Mom’s CA125 was about 8,000 when she was diagnosed with Stage 3C whereas there are other people at stage 3C that had a value of 150.  There have been patients with Stage 1 with a CA125 of 4,000.  It’s a helpful monitoring tool when it comes to recurrence because if it begins going up they can monitor you closely and hopefully catch it early. *


48 hours ago we were trick or treating at the Magic Kingdom …the happiest place on earth.  Right now, right now I have puffy burning eyes from crying.  How could I be crying after we just back from a magical trip to Disney with my parents?  A phone call…a phone call is how. Mom told her nurse that she was taking a trip to Disney with her daughter and grandson.  Mom’s nurse said she wanted to call mom on Thursday when we got back.  Well we are back and apparently so is mom’s cancer.  I don’t know if it was ever gone to begin with.  Her CA125 that was once below 35 is now climbing and above that 0-35 standard.

So what’s next..more blood work and a CT scan…I’ve been trying to end these things with some sort of positive thoughts or take away and I’m sure if I tried I could.  But honestly I don’t feel like it.  So here’s a happy picture instead…

Feelings, Emotions and Just Being Human

When I started this blog it was a place to let my true emotions out. A place I could vent and not make anyone feel like they had to comfort me because my feelings were pretty dark and I didn’t want to burden anyone with replying to a text message with so much anger. If you read any of my early posts they’re pretty dark. 

My friend Amber was the only person that knew about the blog for weeks. And even so I would write posts and save them to the drafts because I was afraid of putting how I felt out into the universe. I remember one day she texted me asking why I hadn’t posted in a while and I told her I was writing but didn’t feel it was good enough. I then gained the courage to publish the posts. I told my family about the blog and then more friends and then it just grew. It became a place for my emotions as well as a place for people to find out how Mom was doing. 

Why am I sharing all of this? Because I feel conflicted. Mom started her PARP inhibitor a week ago. The first few days were smooth sailing. Even though we knew people typically need dosage adjustments I think we felt like she was breezing through. That was until she was 3-4 days in. She started experiencing some gastrointestinal stuff and it felt like it was happening again. Not cancer but just watching someone you love injest poison to stay alive and not feel great because of it. 

And here is where my conflict lies…I feel totally and completely unappreciative vocalizing any of this. We have been given gifts that most people don’t get. The past 4 months have been a dream. Our holidays this past year were magical. So part of me feels like I’m just sounding ungrateful. But this blog is therapeutic for me. And so I must say what I feel and that is…it totally and completely sucks watching someone you love begin to suffer. 

It’s no where close to where it was before. But I think after you go through what we’ve been through there is that fear of it getting back to that place. 

BUT we have a silver lining. These meds can be adjusted. There are MANY dosage modifications that can be made and this isn’t the end but just the beginning. So we will keep our heads up and focus on the fact that adjustments can be made. As always thank you for the love and prayers and thinking of us!