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! 

The Next Chapter

And here we are after a 10ish week break about to begin the next chapter of our cancer story. I say ours because while mom is the one that has cancer it also has impacted and shaped all of us. It is a part of our story and who we are.

Summer has been good to us. We enjoyed family vacations and one on one vacations. There’s still one left (mine). Mom, dad and B enjoyed a trip to London and saw Paris. It was a trip she had planned to take before all of this cancer nonsense began. It was their bookend to a wonderful summer. I say this because Monday she will get blood work done and then Wednesday she will have an appointment to discuss her PARP inhibitor.

We don’t know how the PARP inhibitor will effect her and as I said before the goal of the drug is to prolong the time before recurrence. So she will be on this pill until one of two things happen: 1) the side effects are so damaging that she can’t be on it  OR 2) the cancer comes back and progresses while she’s on it.

So that’s where we have been and where we are heading. I’m sure there will be bumps along the way but it’s nothing we can’t handle because we have each other. As always thank you all for always praying for us. I don’t think I could adequately express how much the love and support we have been given throughout this means to us.

What A Difference A Year Makes

A year ago this month I stood in my parents’ kitchen and chopped off my mom’s hair. What was once flowing locks was now a choppy pixie cut. It was emotional to say the least. Some may think it’s just hair but to those people I ask you to consider this. 

Cancer had inhabited my mother’s abdominal cavity. It had taken away her ability to watch or even hold her grandchild. It didn’t allow her to travel or even water her flowers. A body that was once hers was now being dictated by her disease. And her hair loss was its way of taking away a piece of her identity and revealing to the outside world she was sick. It was another reminder to herself when she looked in the mirror that she was sick. 

She had lost a majority of her hair before her surgery at the end of September and mostly wore scarves. Because of her surgery she had a 5 week break between her first course of chemo and her second course. 

And then a miracle happened. While she was on her second course of chemo her hair began to grow back. Of course initially this caused us concern. Did this mean chemotherapy was no longer working? Logically one has nothing to do with the other. Her chemo was killing rapidly dividing cells in general. So just because her hair stopped responding to chemo doesn’t mean the cancer did. And obviously that was the case for her because as her hair began to grow, her cancer continued to shrink. 

As her hair grew it helped her confidence. It helped her claim a piece of herself back. And while when she saw her reflection it was continuously a shock to see bright silver hair where her brown hair once was she has always maintained deep gratitude that her hair has continued to grow back while receiving chemotherapy. Today she took another piece back. She went to the salon and her silver hair was transformed to a beautiful brown.