flybystardancer: (Sideswipe sacrifice)
[personal profile] flybystardancer
(Subtitled: I Hate Cancer)

So for those who don't know... It will be 8 years next month since my mom was diagnosed with colon cancer. Fighting it has been an on-and-off thing for most of that time, but the last year has been the longest constant fight. It's also been the only time she's severely lost weight and lost her hair. She had two surgeries early on, and has been otherwise fighting tumors as they're found with chemo.

When we first started the chemo rounds a year ago, she was put on FOLFOX. Then, the second dose in, she started going into anaphylaxic shock. They managed to stop the reaction. Turns out she had become allergic to the Oxaliplatin in the mix. It was suggested that maybe they could desensitize her to it, so she saw an allergist and he wrote up orders for how to do it. They tried twice, both times in the ICU. Both times she went into shock again, with the second time much worse than the first. So that was out. They continued giving her the "FOLF" part of the mix for a while, but after her next scan it showed that those two drugs on their own weren't enough. So she was put on FOLFIRI. That didn't help either, the one tumor we were most worried about was still growing. So starting around July they did six weeks of radiation. After giving her six weeks to heal, she started taking Xeloda. (And for reference, all of these chemos are ones she's had multiple times before. In fact, FOLFOX was the very first chemo she was on.)

She wasn't doing well before the radiation. The tumor had been hurting her since October, and was getting worse. And then she was in pain after the radiation, but we were told that pain in her stomach would be normal as she healed from it.

She started eating less and less and the pain got worse and worse. Then it hit a climax a couple Sundays ago and she was taken to the ER and spent a week and a half in the hospital as things were figured out.

Turns out the pain wasn't her healing. She has a fistula that is bypassing her small intestines (so we can't be sure how much of what she's taking in is going down the proper path, and what's going through the fistula). Plus, there's something in the eating reflex that is causing the pain in her lower stomach. The doctor's can't tell what it is.

When she was released from the hospital yesterday, she signed up for their hospice program. Basically, it's a program to help us help her. There's a family member at the house with her 24/7. We have heavy-duty narcotics we're giving her, and we've been trained to give her fluid by IV. (She has a medical port, and they're leaving a needle in it so we just need to hook everything up.) She's not eating a lot, and we're not to pressure her to eat.

Mom wants to get to a point where she can do some stuff. However, the hospice nurse took my aunt and I aside today and told us that the amount she's eating isn't enough to do anything, and at this point anything she eats is like a kick in the stomach. As she eats less and less she'll sleep more and more, until the day comes where she can't even look at food.

Mom's a fighter, but today was a bad day where we were constantly chasing the pain. We got her pain-patches upped in dosage, so hopefully that will help her so she's not constantly looking at the clock for when she can have the next dose of the breakthrough drug. But still it feels like I'm losing her and I'm completely not ready for that. She's too young for her body to be falling apart on her. And I've always needed her for support but now I'm just completely falling apart when I think about what's going on with her, and I can't lean on her for support from this. And I know my family wants to help, but none of them have personalities that are actually helpful to me when I'm falling apart. And it doesn't help that to keep from falling apart I can't dwell, but today I couldn't get away from it.

They wanted me to talk to a social worker but I did, but professionals aren't helpful to me. The nature of the relationship means I can't get close and feel comfortable, and I also have never felt like one truly understood me the way friends do.

So if anyone wants to know how I'm doing, this is it.



And in a less angsty, but still disheartening note...

I was hoping to get a halloween costume done this year, mostly working on it while I was taking care of Mom. However, a week later and I'm nowhere near finished with the corset that would be the foundation for the piece. I have the pattern traced and cut out, fabric to make the final version washed and pressed... And I have no idea how to alter the fit of the corset. I know I need to do some pretty heavy alterations to make it fit me. I'm nowhere near the shape of the block the pattern company uses. And I just don't have it in me mentally do to the heavy math needed that most corset-altering tutorials use. (And I have to be in a bad state if I'm not willing to do the math... That's normally my favorite way!)

I don't know if my wanting to just give up is because of how emotionally tired I am today or what... But the costume just seems so daunting right now. After the corset I have to do the under-shirt, draft and sew the bodice, and draft and sew the skirt. And I'm not a particularly fast seamstress.

Date: 2011-10-14 07:14 am (UTC)
From: [identity profile] dragondancer515.livejournal.com
*just . . . HUGGLES . . . FOREVER . . . despite icon*

Date: 2011-10-14 07:20 am (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs back tight*

Date: 2011-10-14 07:32 am (UTC)
From: [identity profile] mininise28.livejournal.com
..... ......... .......................
..................
.....................
..........
.............


*plushie HUGS*

Date: 2011-10-14 07:42 am (UTC)
From: [identity profile] hoshikage.livejournal.com
That's a really tough situation to be in. I'm sorry to hear it, and I hope that things get easier instead of harder.

As for the corset, if you still want to work on it (would it make a decent distraction?), I hate math so the way I usually do things is just try on a mockup that's too big and have a friend pin it while it's on me until it works better, and then smooth out the new seamlines, try it on again and repeat the process if necessary. Said friend doesn't really need to know how to sew, although it helps - just how to not stab you too badly with the pins :)

Date: 2011-10-14 07:42 am (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs the plushies back!*

Date: 2011-10-14 07:47 am (UTC)
From: [identity profile] flybystardancer.livejournal.com
There's going to be good and bad days. Today was a really bad day.

I would like to work on it. And the size I cut out was the largest size available. I already added an inch to the front panel to put the seam where it meets the middle front at around where a princess seam would be. And unfortunately, I'm also lacking in fabric for a mock-up, and a friend available for fitting help.

Date: 2011-10-14 07:53 am (UTC)
From: [identity profile] hoshikage.livejournal.com
Rats, that does make it a lot harder. I don't personally know of any way other than math at that point - though I will say that the one time I managed to make myself do said math for a corset pattern, it turned out so well I've been just reusing it for a pattern ever since. So maybe if you do start feeling up to the math, it would work out well for you too...

Date: 2011-10-14 07:57 am (UTC)
From: [identity profile] flybystardancer.livejournal.com
Maybe I'll be up to it tomorrow. But I was just looking at one tutorial today and brain was all "eeeeep cannot process". :/

Date: 2011-10-14 08:23 am (UTC)
From: [identity profile] vexed-artist.livejournal.com
*hugs tight*

Date: 2011-10-14 08:32 am (UTC)
From: [identity profile] antepathy.livejournal.com
My grandmother died of colon cancer many years ago. So...I have *some* small idea what you're going through. Enough to know that nothing I can say will make it better. Hang in and take it day by day.

Date: 2011-10-14 09:01 am (UTC)
From: [identity profile] femme4jack.livejournal.com
*so many hugs*

Date: 2011-10-14 11:55 am (UTC)
From: [identity profile] mmouse15.livejournal.com
I am so sorry. *hugs*

Date: 2011-10-14 12:52 pm (UTC)
From: [identity profile] knave-iespyk.livejournal.com
I can't even begin to imagine how difficult it must be to go through this. *hugs*

Date: 2011-10-14 03:22 pm (UTC)

Date: 2011-10-14 03:25 pm (UTC)
From: [identity profile] tirya56.livejournal.com
*Adds to the hugs. And pandas. Lots of pandas.*

Date: 2011-10-14 04:31 pm (UTC)
From: [identity profile] ravynfyre.livejournal.com
My mom was 43 and I was 17 when I lost her to cervical cancer. She never had the anaphalaxis that your mom has had, but her chemo ended up doing more harm than good, too. I have some idea what you're going through, except that we didn't have a hospice program available to us back in '93, so we (my dad and I) took on those duties on our own, with what guidance her oncologist could give us.

I'm not going to lie to you. Everyone likes to say, "It gets better." Well, it takes a long time for it to get better. A long time, and even now, I have days were I'm 17 again, and watching her die by inches every day... It's not going to get better overnight, and it won't be for many years to come.

But it does get different.

I'm not trying to be a downer, hon, but I remember for years after I lost mom how angry I was at everyone. How betrayed I felt, because they all kept telling it that it would get "better", and it never did, and it wasn't fair, and why was this happening? Granted, a lot of that was teenage angst, and I grew out of it eventually, but it still felt like a betrayal of everyone whom I though I trusted before, because I kept waiting for this "better" they kept promising me, which never seemed to come. And it did come. Eventually. But the platitudes and sympathies gave me a false sense of expectation, that they would be there a LOT sooner then they were. Those "better" times.

What I can look back on now and say with absolute confidence is that, even if things didn't get "better" as soon as I wanted them to, they did get different, and sometimes? Different is as good as "better" when you've been stuck in this kind of nightmare for so long. As long as you aren't expecting those magical happy perfect times to be there now, like I was.

I won't lie. This... sucks, and it's only going to continue to suck worse for a time. There is nothing like being as helpless as you are. I understand that part. Why do you think I was so driven to become a paramedic once I joined the fire department? I never wanted to be that helpless ever again.

But it gets different, and if you can look at that different without hating every sunrise and every person who tries to tell you that they understand when they can't possibly have any idea what your life is like? If you can approach each day knowing that, even if it still hurts, that you're still here, and you still have a wide-open life ahead of you? Then you're already ahead of your pain, and those "better" times aren't quite as far off as they once were.

And one last thing. One last thing that anyone who hasn't had to take care of a dying parent day in, day out, can never, ever understand. Not really.

It's okay to feel relieved to have that burden lifted from you. It's only HUMAN to resent the time and effort that everything you're doing takes out of your life. No matter how much you love someone, it's not possible to divorce yourself from the reality enough to NOT feel put-upon and angry sometimes. Do NOT let yourself feel guilty for that. It's human. Just don't let those negative emotions become all that you feel, okay? Nothing you do, or don't do, is going to keep her here past her time. Enjoy, as best you can, what you have left with her, and please, please, PLEASE, do NOT hate yourself for being relieved when the day comes. Okay? It's OKAY to feel that. It really, really is.

Date: 2011-10-14 06:18 pm (UTC)
eerian_sadow: (Default)
From: [personal profile] eerian_sadow
*hugs tight* you call me if you need to hear a friendly voice.

Date: 2011-10-14 06:27 pm (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs back tight*

Date: 2011-10-14 06:28 pm (UTC)
From: [identity profile] flybystardancer.livejournal.com
Thank you. That's just what we're all doing.

Date: 2011-10-14 06:28 pm (UTC)

Date: 2011-10-14 06:53 pm (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs back* Thank you

Date: 2011-10-14 06:53 pm (UTC)

Date: 2011-10-14 06:53 pm (UTC)

Date: 2011-10-14 06:54 pm (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs back as well* Pandas are cute.

Date: 2011-10-14 07:04 pm (UTC)
From: [identity profile] flybystardancer.livejournal.com
The hospice program is being really helpful. THere's a nurse who comes out and sees her at least once a week, and we have numbers to call 24/7 about anything dealing with Mom. (Questions, emergencies, whatever.) It also covers all of the costs for medication and equipment for her. They specialize in pain management, and that's what Mom needs most at the moment.

I think I'm still having a hard time with thinking about the future. I've always been close to Mom and depended on her for support, so I never could imagine her not being there, even after the cancer coming back time and time again. It's hard to still want to do all the things mothers are supposed to do with their adult daughters, but to know that they most likely aren't going to happen.

The relief I've known about. The social services worker talked about it, but we also talked about it before, in the context of my dad's sister. She had been doing a lot of the work in visiting and handling the care home staff for their mother (who had alzheimers). She had struggled with that part after my grandmother passed. I may still struggle with it myself, but at least I'll be prepared for it.

The suddenness of this is what's getting a lot of us. Even a year ago it seemed like she still had years left to live.

Date: 2011-10-14 07:05 pm (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs tight back* I will.

Date: 2011-10-15 12:28 am (UTC)
From: [identity profile] vejiraziel.livejournal.com
I'm really sorry to hear this. I have no words that can make things more bearable, so all i can offer are these internet hugs I can't deliver in person. *hug*

Date: 2011-10-16 06:35 pm (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs back* Thank you.

Date: 2011-10-20 03:01 pm (UTC)
From: [identity profile] ravenclaw-devi.livejournal.com
I've always been close to Mom and depended on her for support, so I never could imagine her not being there, even after the cancer coming back time and time again. It's hard to still want to do all the things mothers are supposed to do with their adult daughters, but to know that they most likely aren't going to happen.

I know what you mean. My mother died of cancer and I do kinda still feel - things I can't put in words right now.

*big time HUGS*

Date: 2011-10-22 06:17 am (UTC)
From: [identity profile] flybystardancer.livejournal.com
*HUGS back* Thanks. It's different, trying to be the strong one.

Date: 2011-10-29 02:27 pm (UTC)
From: [identity profile] mommimus-prime.livejournal.com
{{{Hugs}}} I'm so sorry to read this. My thoughts are with you and your whole family. {{{Gentle Hugs to your mother.}}}

Date: 2011-10-30 08:20 am (UTC)
From: [identity profile] flybystardancer.livejournal.com
*hugs back* Thank you. It's a hard time for all of us, but we're trying to pull together into a stronger unit over it.

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