We Are In The Endgame Now

This is probably the most bizarre blog post I’ve written but the fact that I can tie mom’s cancer to a Marvel movie, well ya it’s just bizarre. But hear me out.  Also, this post contains spoilers from Avengers: Endgame.

I was thinking about it on my drive to work, how this whole thing makes me feel and how I could describe it in a visual way.  When she started chemo back in 2016 it always felt like I was in quicksand the day she would start.  I would feel this weight pulling me down and it happened like clockwork with every new cycle.

Today I was thinking about her CA125 number and how it felt like I was standing in a room and the walls were just one by one collapsing. As I went to hold up one wall another would fall. And then I thought “NO! It’s like the final battle in Avengers: Endgame”. If you haven’t seen the movie this post may mean very little to you. And if you have…it still may mean very little to you.  But it makes sense in my mind with how I feel, and this is how.

So Thanos, he plays the role of all the cancer that has been there since reoccurrence began that we’ve been trying to defeat all along.  Previous chemotherapy drugs are the Avengers that survived the snap and have been trying to take Thanos down without any previous success.  They’ve beaten him up a bit but he’s still standing.

So here we are in the final battle.  All the Avengers knocked out minus Cap (aka Captain America but I feel comfortable enough with my Marvel love to refer to him as Cap) and he’s just standing there bloody and broken ready to take on Thanos. Then all of Thanos’ little minions come flying in out of nowhere and that is how 9,387 feels.  Like you’ve put in all this fighting and given it your all and out of nowhere cancer is like, Hey if these current lymph nodes weren’t enough to deal with I’m going to throw in some more lymph nodes or tumors to deal with. Plus, I’ve already defeated the rest of the chemotherapy drugs that were made to destroy me.

And that is where the similarities end because in Avengers: Endgame a bunch of Avengers pop through portals via Doctor Strange and Wong and it’s this epic battle. RIP Tony.

The problem with our situation is that we don’t have reinforcements and backup. The cancer proved to be stronger than them. We have one drug to take down an army of cancer. The question is, will it be strong enough to get the job done?

We Need A New Plan

There are variety of directions I considered taking this post. I’ve been sitting in the same spot for an hour and a half drinking my strawberry acai refresher from Starbucks trying to think of something.

I could go deep and talk about the suckfest that was Wednesday. I could give you the facts and the game plan. I could try and be funny or lighthearted or try to be super positive.

So maybe I’ll just try real. I don’t know how I’m feeling or what to think. Wednesday was the same as it’s been for a while. CA125 keeps going up and due to a combination of things mom didn’t have chemo on Wednesday. This treatment plan just isn’t cutting it. It’s begun to feel pointless for her to feel like garbage and stay in the hospital when the chemo isn’t doing what it’s supposed to be doing. So after consulting with nurses and the oncologist she was discharged and went home.

She (and we) get the next two weeks to regroup and get ready for a new plan. On April 4th she will have a CT scan and on April 8th we will go over that and talk about what chemotherapy to try next.

It’s a lot and it’s the same thing over and over again which is both numbing and frustrating. It also feels surreal because she looks good (which we are incredibly thankful for…I’m not complaining…just trying to convey my emotions). They’re coming back with these numbers and scans that indicate cancer growth and she doesn’t look sick. She looks like her. So it’s hard to wrap your brain around.

Thank you all for your love and support and prayers and kind words. It means so much to us. 💜

CT Results

The cancer is throughout the lymph nodes in her abdominal cavity but it hasn’t grown much so they are considering it stable. The lymph nodes grew by 0.2cm on average.  So while they are growing they are growing at a super slow rate.  So that’s why they are classifying it as stable. In order to keep it stable she will have to be on chemo indefinitely. They will stick with the same drug she is on and are adding another chemotherapy drug next cycle.  They will stick with this protocol until either the lymph nodes grow larger by 30% or she has a severe allergic reaction. He let us know that this isn’t going away with treatment and that the goal now is to keep it small and stable.

So while it isn’t the best news its certainly not the worst.  We would have liked to have heard,  “These things are shrinking and you should be in remission in no time”, absolutely! But we also didn’t hear, “It’s growing out of control and there’s nothing we can do”.  So ya it’s a bummer, but it could’ve been worse.  So that’s what were rolling with.

 

**Thank you all for taking the time to read the blog, pray for us, reach out to us and surround us with so much love and support.  It truly means more than words can express.  You are all wonderful and we appreciate every single one of you!**

Some Thoughts

My mind is somewhere else and it probably will be this entire week. It’s torn between what my mom’s test results will be and remembering to get eggs to make cupcakes for Julian’s birthday.

I’ve developed a coping mechanism over the past couple years. I’m not really sure if it’s actually a coping mechanism or just an attempt at avoidance.

When my mom was first diagnosed my fears were always at the front of my mind. I would sit on the bathroom floor every night and just cry. Eventually this subsided.

These days I’m almost able to stick my fears in a box and focus on what we have. What we have been blessed with and not what we stand to lose. I’m sure this has come with time, therapy and medication. But on weeks like this I allow myself to open the box. I allow myself to feel my fears.

February 14th she has her scan. And once that scan is complete we know at any moment her nurse could call and give us some crappy news. The 18th she meets with her oncologist so we are guaranteed to know something by then.

Maybe chemo has started working. Maybe it hasn’t. Maybe the next drug they try will slow or destroy the cancer. There are a lot of maybes. But there is one thing I KNOW for sure…regardless of the news we receive we will deal with it how we always have with tears, humor and with love and support from the people around us.

Is chemo working?

Today we got some not so fun news or as we like to put it “we are getting to the scary part of our programming, folks”. Mom’s CA125 is up to 400. Blahhh. So either the chemo she received January 9th isn’t working OR it just hadn’t had time to go to work on the cancer.

So what’s the plan. Chemotherapy. Right now as I type she is being hospitalized and receiving her chemo at a very slow rate over the course of about 24hours in hopes to avoid an allergic reaction.

Within the next 2-3 weeks she will have another blood draw and a CT scan. The hope is that her CA125 will be down in the 300s (or lower). If that is the case she will continue with this chemo protocol of hospitalization every 3 weeks. If it hasn’t gone down there will be a change in chemotherapy drug.

So now that I’ve got the details out of the way I’ve gotta give props to my mom. We didn’t get the news we were hoping for but we laughed a lot today. We made her oncology team laugh. Not sure if they were laughing with us or at us! I don’t know what the future holds but today we laughed through a tough situation and that’s gotta count for something. 💜

Chemo shmeemo

“Chemo shmeemo. Chemo is no fun because you can’t hug people. Especially old people like Mimi” – Julian

This was Julian’s reaction when I told him Mimi (my mom) starts chemo this Wednesday (Nov 14). They tried to get her into a clinical trial but she didn’t fit the criteria. There was a PARP inhibitor trial but the prior two PARPs she was on didn’t work so chemo was the way to go.

After 3 cycles (9 weeks) of chemo she will have a CT scan. So with accounting for delays she will most likely have a scan at the end of January early February. This chemo cocktail caused a lot of platelet issues last time around. So I’m just sort of accounting for delays due to that.

All the love and support is so deeply appreciated. We are very blessed to have so many wonderful people thinking of us and praying for us.

Thank you all so very much ❤️

It’s Been A While

Hello, it’s been a while.  Almost a month since the last time I wrote a post.  The reason is a good thing. We’ve just been over here living life.  Mom was getting chemo once every 3 weeks and other than that we’ve just been enjoying summer.  Mom has been making up for last summer.  Watering her flowers without intense amounts of pain and going on vacation.  We don’t talk about cancer or death like we were.  But things are starting again or ending, I suppose.  All depends what the scan says.

Today mom will have her final chemo for this course.  This could potentially be her last chemo for a very long time but that all depends on the scan.  Today she met with her oncologist and here is the game plan.  Chemo today, scan next week and an appointment to go over the scan on July 3rd.  Something about seeing the words scan next week makes my stomach turn.  I guess it’s because I know how we all get after a CT scan and during the waiting period.  Hoping for good results and overanalyzing how we will react if it’s bad news.  It’s been a rollercoaster and this is just how we are programmed at this point.

So if the scan is clear mom will start a drug called a PARP inhibitor.  It is a pill she will take until the end of time.  The PARP inhibitor is a drug that treats cancer.  Specifically patients with BRCA mutations like mom.  It makes the cancer unstable so it can’t grow.  It doesn’t extend a person’s life but extends progression free survival.  Progression free survival is the amount of time a person is living without their cancer growing and spreading.  The downside to these drugs is that over time the cancer gets smart and figures out a way around the drug (a secondary mutation) and then you need to find a new drug because the current one becomes ineffective.  I’m not saying this to be a downer.  Just scientifically this is how these drugs work.

So two weeks of limbo and then some answers and a plan going forward.  As always thank you all for your love and prayers and support throughout this insane year!

She Picked Him Up!

I got to drive her and sit with her during chemo today. It was nice to feel like I was doing something. I can’t take away her pain or make her cancer disappear but I can be there. My dad is funny because he is such a planner. He had been taking her to her treatments and he texted me in the morning giving me directions and her specific sandwich order.

Today is the end of Cycle 1. Six more chemo treatments before scans and a possible surgery. And yesterday my mom picked Julian up! It had probably been a little over a month since she got to hold that sweet boy and she even danced with him for a couple minutes. This gives me hope.

Chemo

Tomorrow is the second chemo treatment. I’m nervous and scared and anxious and I feel like I could explode. I hate everything right now.

It’s frustrating not being able to do anything. We just keep buying her presents. If it brightens her day for just a second or she can look at it and think of us. All of this feels so helpless.