Here’s the thing. I have been trying to write this blog for like an hour. Trying to find the right words. And there are no right words. Today was another hard day. Today we decided to begin at home hospice services and I hate it. The woman from hospice was very comforting and caring. I just hate what it all means.
Here’s the thing. Things aren’t great. Everyday is different or just a version of the same. Nights are rough and she hasn’t had a full good day in a long time. She hasn’t left the house since her palliative care appointment.
The reality of all of this is settling in and the fact that the best is behind us. Disney can’t save us this time. However, we did have a nice little Disney shopping spree from the couch a couple nights ago.
Watching her go through this is painful. We are all just really sad and the worst part is that we aren’t even at the worst part. We laugh, we cry, we sit in silence, we watch home videos. All of this just feels like a really big suckfest.
Palliative care. The first time I had really heard of palliative care was the day after mom was diagnosed. A gynecological oncologist spelled out moms options. She said if my mom opted not to do chemotherapy they wouldn’t do surgery and they would just refer her to palliative care for comfort care. Of course as we all know mom did do chemo and have surgery and have a heck of a 3 and half years + filled with lots wonderful memories as well as struggles.
But anyways here we are back to the start and palliative care. When I think of palliative care I think of comfort and giving mom the best quality of life she can get at this stage in the game. Which as of late hasn’t been much. She looks great, I know! Except for when she doesn’t. Since returning from Disney she’s left the house 3 times. Solely to go to doctors appointments. And it’s not for lack of motivation, she has things to return to Home Goods and a store credit to take advantage of. She just has a lot going against her these days with the cancer and her bowels and now a sinus infection.
So anyways palliative care. So we get in there and I’m feeling like ok this is going to be potentially good. Comfort care. They send a woman in to go over her medication list. And it was not comforting and she was actually pretty rude. They’re relocating her (shocker!) luckily to another location. She was just not who you would want going on this “journey” with you. It was a rough start.
But then her actual palliative care nurse came in and I felt like I could breathe. She made note of all of mom’s issues. She set a goal of being able to get her out of the house and get things more under control. She listened to mom’s concerns. She left the room to go look things up so she could think of the best plan possible. She said mom is very much alive and she wanted help her achieve some quality of life. It was comforting.
It’s hard being at this point. It’s hard seeing such a strong independent person have to fight so hard to feel like the person she was before. I am BEYOND thankful for every second we have had and I know we have been beyond blessed for everything we have been given and we hold onto that. But it’s still just really hard.
Today was an appointment that no one with cancer really wants to have. The appointment where you are ending treatment but not in the fun you are in remission way but in the nothing is working and we have nothing left to try way. Mom’s CA125 is well above 10,000 which means the chemo she was on did not work. She isn’t eligible for any clinical trials because of her resistance to certain classes of chemo drugs, her PARP resistance and the location of the cancer. Also we got the results back and she isn’t a candidate for immunotherapy.
He told us that once she became platinum resistant there really wasn’t anything they could do to extend her number of days. And by giving her treatment that isn’t working they were just taking away her good days if she’s stuck on the couch due to side effects. He told her to plan some vacations and to live her life.
We then went up to get her port flushed and our favorite chemo nurse was there. She gave mom her very first treatment and incidentally also gave her her last treatment. It was emotional to say the least. She gave us hugs and we were able to thank her. Over the past 3 and a half years she listened to our stories, answered our questions and laughed at our jokes. She was our chemo angel and I will forever be grateful for her.
The next step will be for us to meet with a palliative care team and they will help guide us through these next steps. Our hearts are broken but we are determined to make the most of our time together just as we have over the past 3 and a half years.
As always thank you to every one of you. Your prayers and kind words have meant more than you can know.
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?
Mom’s CA125 is now at 9,387. On September 26 it was at 4,298.
On June 24, 2016, the day she was diagnosed she was at 8,374. It’s sucky news for sure. But the silver lining is she isn’t in the same condition she was when she was diagnosed. She’s still functioning and not doubled over in pain and that feels like a pretty big miracle.
Today she started her new chemotherapy and now we just wait and see if it does anything. The effectiveness of this drug is between 15-20%. So while I would love to be optimistic my brain won’t allow me to set myself up for the heartbreak of another failed drug. So I’m just going to live in the moment and appreciate that mom is here and still her crazy self.
Thank you all for your love and support and riding along with us on this crazy cancer coaster 💜
Nothing to see here just a girl sitting in a public cafeteria crying while watching a sad show. And then the text comes through that Mom gets her B12 shot tomorrow. It’s to combat side effects. She will be set to start chemo the week of November 4th. And now I’m crying not because of the show but because of real life.
The past 3+ years have been a time of memories and miracles but it’s also been a time of worry and heartache. We are blessed to be going back to Disney in 10 days. But the things that come after that, well it feels scary. With a new drug comes new side effects. And then there is the whole what happens when this thing doesn’t work?
I’m doing my best to enjoy the moments but the thoughts still creep in. And I will wake up certain mornings at 2am just sick to my stomach because the idea of another drug not working is too much to handle.
So I just let myself feel all the feelings because that’s all I can do. So sometimes I will laugh and sometimes I will burst into tears and that’s ok.