I got an email from Ceejay the other day that was very touching. But, it also made me realize I haven't posted in a long time, and when you drop bad news like I did, you better be darn sure you're updating!
So here's the scoop. I started the meds for the kidney cancer in January and had to wait until April 30 to get a CAT scan and results to see if they were working.
My doctor warned me that 'success' was defined as the tumor staying the same, and not spreading. If the tumor shrinks? That's basically a miracle.
I got the miracle, at least for now. The tumor became less dense and had holes in it, indicating shrinking. It's still huge, but marginally less so.
It's still gigantic and it's still terminal, but at least the meds bought me a little more time.
The meds are rough, though.
I thought I understood cancer, I really did. I took care of my grandpa and my dad as they died from it. But I was missing a huge piece. I 'understood' cancer in the context of elderly men who refused treatment and were content to go because their work on this earth was finished.
I'd never personally experienced the fight. The hospital visits, the horrors that cancer treatments bring to those with the disease. fighting tumors is hard. Surviving the treatments is hard. It's like chemical warfare in your body. it isn't pretty. It isn't easy. it hurts.
Every month I get a new bottle of pills from the pharmacy, and once I pop the lid, I know I'm in for even more life-altering side effects. It's like a surprise pack: hold tight. You don't know what you're getting this time. The longer you take the pills, the more you have to deal with. For instance, all of my body hair has turned white. even my eyebrows and eyelashes. My skin, nose, mouth and throat are so dry they hurt. And let's not even talk about what's happening in the bathroom!
And I'm starving to death, at least according to my blood work. Because the meds suppress my appetite, and if I do actually try to eat, the meds have killed my taste buds, so everything tastes bitter like brussel sprouts. Oh, and my mouth hurts, so it hurts to chew and it hurts to swallow. Then, my stomach gets upset. Ugh! see what I mean? If the cancer doesn't kill you, the treatment will.
I apologize if I sound like I'm complaining. It isn't my intention. I just wanted to convey that I'm on a road with no map, and it's a real challenge.
In the meantime, I'm trying to make peace with my mortality. wrap up loose ends. I'm also trying to sort and give away extra stuff, so my family doesn't have to deal with it.
But it's a minefield. I have to do it in secret because dh gets upset if he thinks I'm preparing to die. His skin has not grown any thicker, as I hoped it would, as he had more time to adjust.
I really only break down when I think about the pain I'm causing and will cause my children and my family. And I realize a huge part of the rest of my life is managing other people's feelings and trying to put THEM at ease.
Particularly DH and my Mom. They get super angry and/or crying upset/stressed out if I'm not doing or acting the way they need me to in order for them to be okay. Did that make sense? It's like I have to put on a show for them when they are around, doing whatever they associate with me being well, so they don't epically break down.
It's frustrating and exhausting, but I understand why they need it. They hold on to ultimate hope I will somehow be cured, because if they didn't, they'd be swallowed whole by devastation.
My social life is harder in weird ways, too. I'm making an effort to go places and do things I used to do if I am even remotely able. But the side effect? When I run into social friends, many of them don't know what to say to me, or they look at me with sad eyes. I want to shake them and scream "I'm not dead yet!" but I hold back because I know they mean well, they just don't know what to say.
I mean, who does?
So yeah. This is my new life with terminal cancer. Glamorous, isn't it?
In financial news, we aren't spending much so we've managed to squirrel away extra money, and I'll do that as long as I can. I'll have to spend some on house projects, but that's okay.
Why yes, I am still alive.
May 9th, 2018 at 11:33 pm
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I think I'll be getting scans every 3 months, but I am not sure.
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May 10th, 2018 at 11:33 pm 1525995224
This post offered so much insight on some of the challenges on what you and others go through on chemo.
Thank you for sharing. You’re amazing. If your children are young, please leave a letter or journal detailing everything you think they would want to know about you, your humor, and your hopes and dreams for them.
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You hit the nail on the head...people don't know what to say.
Thanks for checking in...glad you've gotten a miracle and hopefully it will continue.
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May 15th, 2018 at 11:29 am 1526383747
"And I realize a huge part of the rest of my life is managing other people's feelings and trying to put THEM at ease."
I'm helping R. this Friday decluttering his condo becus he says he feels overwhelmed by how much stuff he's got to sort through. I don't want him to have to expend more energy to put me at ease, even though it still shocks me how he has changed. So thank you for your insightful observations.
We are here for you, as much as we are able to, electronically. Thank you for sharing some very difficult and personal challenges. You're in my thoughts and prayers.
May 15th, 2018 at 05:31 pm 1526405503
May 25th, 2018 at 09:09 am 1527239365
Anyways, I'm really glad to hear from you, although honestly, I am never sure what to say in moments like these. Please take care of yourself as much as you can.
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