Staying Positive Is Fucking Hard
There are too many variables up in the air when it comes to most cancer treatments. Some are lucky and have localised cancers which can be cured with surgery or radiation. Some are less lucky and need to undergo chemo/radiation to shrink the tumours before they can have surgery. Some are even less lucky, like myself, who are given little opportunity for 'cure'. Just because the cancer decided to take the party outside the stomach and into distant lymph nodes, liver and bone.
At least that's what the last CT scan showed - that there is more metasteses BUT we are shrinking them with chemo. So we're buying me some time. I still feel like shit on chemo but this round has so far been more tolerable. I'm staying on top of nausea better - though I'm getting this weird "ball" sensation stuck in my mid esophagus. Some burping tends to relieve it but it's a strange spot for gas to get stuck.
Not to mention I overate at dinner and was miserable all night trying to digest all that acidic bolognese and meat... WORTH IT. I don't fucking care. As long as the stent doesn't get blocked - I will eat whatever the fuck I want while I can.
So yeah, one more chemo cycle with evil cisplatin and then I'm effectively "done" depending on what the next scan shows. I could do two more cycles with my 120hr 24/7 5FU infusion bottle which drives me nuts. Imagine not being able to shower properly or wash your hair for 5.5 days. It wreaks havoc with my mental state.
Otherwise, it's just me going in to get the immunotherapy (or placebo) and we monitor the cancer closely to see if it's working. If it's not, more chemo - my oncologist says it'll be easier than what I've already had as they hit me with the hard stuff first. Yay?
The problem is that with this kind of cancer, diffused adenocarcinoma with signet ring cell / linitis plastic characteristics, it doesn't show clearly on any scan. So who really knows if we're treating me with the right stuff?
As long as the stents hold strong and don't give me anymore issue other than a restricted diet, I might be able to find a new normal and live again. But staying positive that this will be doable is HARRRRRRRRRRD. Everything feels stacked against me and I'm just supposed to "stay strong!" "be positive!" "thoughts and prayers!" ARGH.
People want me to make plans months ahead when I don't even know how I'll be in 2 weeks. It's really fucking hard. I want to be a "strong fighter" but maybe all those strong fighters were too scared to let their vulnerability show - so their caregivers could feel better. It's so unfair. I don't want to censor myself so others feel better and I just end up worse on the inside.
I wish I could live inside a warm dark place and disappear. And other days I wish I had nothing but sunshine and ocean breeze with sand between my toes. But most of the time I just want my life back. I want to lie flat after eating and have no reflux because my GE junction hadn't been obliterated by tumours.
Sigh, I don't even know if this blog will help anyone. But if you are experiencing heartburn/indgestion or a hard pain in your sternum when you swallow big gulps of food? Go get yourself to a good GI doctor and get an endoscopy. It's the only way I was diagnosed. Cancer didn't show up on a barium swallow xray, chest xray, stomach ultrasound, and countless bloodwork. Gastric cancer is a little bitch and we need to beat it down.
So get checked - then get yourself to a geneticist to test if you have the CDH1 gene which can affect your children and put them at risk for developing stomach cancer. Check if you have an H Pylori infection. Check EVERYTHING.
And tell your friends to do the same. Maybe when there's more hope and awareness ... maybe then, it'll be easier for us stage 4 inoperable people to stay positive in the light of insurmountable odds.
At least that's what the last CT scan showed - that there is more metasteses BUT we are shrinking them with chemo. So we're buying me some time. I still feel like shit on chemo but this round has so far been more tolerable. I'm staying on top of nausea better - though I'm getting this weird "ball" sensation stuck in my mid esophagus. Some burping tends to relieve it but it's a strange spot for gas to get stuck.
Not to mention I overate at dinner and was miserable all night trying to digest all that acidic bolognese and meat... WORTH IT. I don't fucking care. As long as the stent doesn't get blocked - I will eat whatever the fuck I want while I can.
So yeah, one more chemo cycle with evil cisplatin and then I'm effectively "done" depending on what the next scan shows. I could do two more cycles with my 120hr 24/7 5FU infusion bottle which drives me nuts. Imagine not being able to shower properly or wash your hair for 5.5 days. It wreaks havoc with my mental state.
Otherwise, it's just me going in to get the immunotherapy (or placebo) and we monitor the cancer closely to see if it's working. If it's not, more chemo - my oncologist says it'll be easier than what I've already had as they hit me with the hard stuff first. Yay?
The problem is that with this kind of cancer, diffused adenocarcinoma with signet ring cell / linitis plastic characteristics, it doesn't show clearly on any scan. So who really knows if we're treating me with the right stuff?
As long as the stents hold strong and don't give me anymore issue other than a restricted diet, I might be able to find a new normal and live again. But staying positive that this will be doable is HARRRRRRRRRRD. Everything feels stacked against me and I'm just supposed to "stay strong!" "be positive!" "thoughts and prayers!" ARGH.
People want me to make plans months ahead when I don't even know how I'll be in 2 weeks. It's really fucking hard. I want to be a "strong fighter" but maybe all those strong fighters were too scared to let their vulnerability show - so their caregivers could feel better. It's so unfair. I don't want to censor myself so others feel better and I just end up worse on the inside.
I wish I could live inside a warm dark place and disappear. And other days I wish I had nothing but sunshine and ocean breeze with sand between my toes. But most of the time I just want my life back. I want to lie flat after eating and have no reflux because my GE junction hadn't been obliterated by tumours.
Sigh, I don't even know if this blog will help anyone. But if you are experiencing heartburn/indgestion or a hard pain in your sternum when you swallow big gulps of food? Go get yourself to a good GI doctor and get an endoscopy. It's the only way I was diagnosed. Cancer didn't show up on a barium swallow xray, chest xray, stomach ultrasound, and countless bloodwork. Gastric cancer is a little bitch and we need to beat it down.
So get checked - then get yourself to a geneticist to test if you have the CDH1 gene which can affect your children and put them at risk for developing stomach cancer. Check if you have an H Pylori infection. Check EVERYTHING.
And tell your friends to do the same. Maybe when there's more hope and awareness ... maybe then, it'll be easier for us stage 4 inoperable people to stay positive in the light of insurmountable odds.
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