Tag: ovarian cancer

We Are In The Endgame Now

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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

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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

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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

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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?

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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

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“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 ❤️

The Next Chapter

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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.

June 24, 2016

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We are not the same people we were a year ago today.  In some ways better and broken in others.  Living in fear and living with a deep appreciation.  This is going to be a long one.  This is the story of June 24, 2016.

It was a Friday and I was in the cell culture room and I looked down at my phone to see a text from my mom saying her gastroenterologist was sending her to the ER for a CT scan.  She had been experiencing abdominal pain for some time.  She assumed it was Celiac Disease or IBS related.  On Father’s Day she came to the decision to make an appointment with her gastro because the pain was so intense and she wanted to make sure nothing serious was going on.

My dad came home early that day which was rare and a gift.  He decided to take her to her appointment and then was there to drive her to the ER.  Her gastro believed she was either impacted or had fibroids and may require surgery.  I’m not going to lie I felt smug.  As I read the text I thought see I told you to go to the doctor weeks ago and you wouldn’t need surgery. Never have I been more wrong.

My sister was watching Julian and I came home early that day so she could see my mom before she headed to volleyball that night.  I would head there after my husband got home from work.  She visited mom and told her she would be back to visit after her game.  Mom told her not to be silly and that she didn’t need to come back.  She had yet to receive her CT scan results but assumed it wasn’t something incredibly serious.

My husband told me I could drop off Julian at his work and head to the hospital to see mom.  My response was that I could wait because it probably wasn’t serious.  And then it happened, as I was sitting on Julian’s bed recording him “sing/play” Hey Jude on his piano…a text came in from my dad “what time are you coming to the hospital?” Panic ensued as I texted him back.  I called my brother instantly.  He also received a text “mom wants you to come visit”. My stomach dropped.  Less than 30 minutes ago she had just told my sister it was silly for her to visit and now they want us there.  I called my husband and packed a book bag for Julian and picked up my brother on the way.

After we dropped off Julian I told my brother I had a feeling that this was one of those moments that would change our lives forever.  We got into the hospital and hunted down the wing she was in.  It’s like we were moving in slow motion.  They had admitted her as a surgical patient but as we were walking I kept seeing signs with the word cancer.  The buildings were just connected but seeing the word as we walked made my stomach drop.  And every time we passed another sign that said cancer I felt more ill.

We got in the elevator and got to her room.  She was the second patient so when we walked in I could only see my dad pacing near the window.  I can’t even imagine as a parent what it must have been like for them waiting for us to get there.  When we reached mom she asked us to sit down.  She uttered the words “It’s ovarian” and I burst into tears and remember saying “no mommy no” repeatedly.  I don’t recall a time ever calling her mommy but I guess in that moment I went from 29 to a terrified child.

At this point it was just the four of us there.  We were missing one last piece to the puzzle.  If I could’ve spared Lex the pain we were enduring I would have.  If I could have texted her and said stop don’t come in here and just enjoy being happy for another second…I would have but I couldn’t.  So we just talked in a fog and waited for her to arrive.

After sitting there for a bit they had to check mom’s vitals or something.  Lex and I took this opportunity to go outside to call our husbands. We unknowingly took the service elevator and were trapped because we didn’t work there.  Luckily an employee got on and swiped their badge so we could get off the elevator. I was kind of glad this happened because it gave us a funny story to tell when we got back to mom.

We each called our husbands, we each called a childhood friend that have been like sisters to us for over 20 years and I texted my group of close girlfriends.  When we tried to get back in they wouldn’t let us because we didn’t have our IDs and it was after hours.  Our IDs were in mom’s room.  Eventually they let us through.  Another funny story we could tell mom.  We were 2 for 2.

After being there for a bit mom was starting to get tired so we left.  At this point all we knew was that she had what they suspected was ovarian cancer and it was NOT good.  I got home and I held my breath when I walked into the house.  I could barely speak.  I knew if I did I would start crying and I didn’t know if I could stop and I didn’t want to scare Julian.  I went into the bathroom and turned on the shower and sat on the floor and balled my eyes out.

So that’s where we were at and it is much different than where we are at today.  Mom has endured a biopsy and chemo and genetic testing and surgery and more chemo and WBC shots and blood transfusions.  We have enjoyed an entire year of holidays that a year ago we didn’t think would come.  I personally have undergone my own personal growth.  I have started yoga and therapy and anti-anxiety medication.  I have begun to approach life in a completely different way with a deeper appreciation for every day.

I don’t know what the next year will bring but I know I am strong and I know my family is strong.

It’s Been A While

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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!

WBC and platelets and hemoglobin, oh my!

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When Julian was born I was often told I had a second or third child attitude towards certain things in contrast to a new mom.  It most likely had to do with the fact that I was too exhausted to have everyone constantly disinfect their hands before holding him because he cried around the clock.  I thought about this a few months ago with regards to my mom and her chemotherapy.

A couple weeks before her surgery back in September Julian came down with a cold.  It was his first cold since she had begun chemo and it totally freaked me out.  We had been visiting her most week nights and I quarantined him during that week.  I couldn’t let him be responsible for getting her sick and I feared her body couldn’t fight the infection.  She told me not to worry and that she still wanted to see us.

That brings me to the counts.  Before every chemotherapy they do a blood work up.  They measure a lot of things but my main focus has become these three: white blood cell, platelets and hemoglobin.  Every week I wait for the text message with her latest counts. If her white blood cell count was low I would know to stay away if we were feeling under the weather.  If her platelets were low we would know her blood might have a difficulty clotting. And if her hemoglobin is low, well we know that without a blood test.  After so many weeks of chemo my mom has become a wizard and can tell when her hemoglobin is low.

Yesterday I ran into my parents at target. I saw this woman walking in front of me and I thought it was my mom by the way she was dressed and the way she walked. So I began to follow her.  Luckily when the woman stopped and turned it was my mom because that could’ve been an awkward encounter and a bit stalkerish.  Anyways we were walking around looking for my dad and she was a bit out of breath and she told me her hemoglobin was low. Sure enough when they did her blood draw today it was and they’re giving her blood as I type.