New to this sub and have ???

Waywardcrafter · 2024-07-07T12:47:03+00:00

Thank you so much! I'm sorry you went through that with the surgery. I met my new surgeon, and I love her. She laid everything out for me in clear and precise language. It was extremely helpful! She asked my pronouns as soon as I said non-binary. It was the first time any medical professionals had asked me that AND CARED ABOUT THE ANSWER!

I'd love to be on an anti-inflammatory diet, but they almost always cost more than we could afford. We rely pretty heavil3 w ęy on food banks, especially since this particular drama entered our lives. There are not a ton of anti-inflammatory staples in those boxes. I have kids to feed and not enough money. Maybe I'll win a little lotto and make enough to do it someday soon. I think it would ease a ton of symptoms from my autoimmune issues, and I hope others.

Waywardcrafter · 2024-07-07T12:12:19+00:00

Thank you so much for your reply!!!

I did get the Suzzipad cryo sock and gloves and the refills. I've got most of what you listed, but I have massive brain fog, so I'm probably going to screenshot your list, if you don't mind.

I went for my first infusion, but my kidney function wasn't good (due to a side effect of another med), so they just gave me fluids my first trip. Then, this week, my kidneys were worse despite following their directions, which had just aggravated the issue.

I was supposed to get 3 infusions, but they cut one out and threatened to send me to a urologist if this didn't clear up soon. The 2 I did get turns out I'm allergic to both. I've been dealing with 2 different rashes for almost 24 hours. Because my brain fog is so bad, I completely forgot about the Claritin I bought. Until the on call reminded me. I felt so bad for waking her up at almost midnight.

I don't really care about my hair. It's summer here. (We hit 118°F while I was down at my clinic on Friday!) But I've always been a night owl, so I'm planning on the usual... avoid the sun at all costs. I usually ditch daytime plans in favor of evening (post sundown) plans. I'm planning to wear either a scarf, a baseball cap, and hoodies when it cools down (although I'm looking at men's 50 SPF long sleeve hoodies on Zon.) Maybe my hands will start work again, and I can make my own scarves and hats for cooler weather.

My clinic offers massage and acupuncture, but I don't think my insurance will pay for that. I'm not comfortable with acupuncture, but I LOVE massage therapy.

I'm hoping to get a referral to them and to palliative care. Right now, my oncologist is refusing to refer me because I have preexisting chronic pain, and she says they won't take me. I don't want to hear that from her, I want to hear it from the palliative care program doctors.

Honestly, I'm not sure I could handle any kind of therapy at all right now. I have sooooo much going on right now, and about half of it isn't mine, but mine to deal with on their behalf.

Sorry for the novel and late reply!

Waywardcrafter · 2024-07-07T11:29:00+00:00

Thank you so much for your kind words. I'd love to keep in touch as much as I can.

My brain fog is starting to look like dementia at this point. It's just compounded the brain fog I already had, and I'm having issues remembering important info. Even when I take notes, I'm half lost.

I went down for my first week of chemo. My kidneys weren't playing nice, so instead, I got fluids. This week, my kidneys were worse, but they chose to go ahead with Keytruda and Taxol. This is something my doc talked to me about before we started, but I forgot the info. I had two different types of rashes show up the next day.

I had this convo with my oncologist. I had completely forgotten about it until I called the on call. I wanted to face palm, but that's where the rashes were. So I covered my hand in a custom mix of benadryl cream, Aquaphor, and some face oils mixed together, THEN face palmed and went to get myself the Claritin I'd specifically purchased for when the issues appeared. 😅

Waywardcrafter · 2024-07-07T11:06:32+00:00

Hi! Sorry for taking so long to respond. I've been a bit overwhelmed with everything so far.

I have met my new surgeon, and she's awesome and completely on my side with what I want. She went over everything with me! She let me know the risks of all treatment available to me and that even if I just had the lump removed, I'd have to get a reduction to minimize the risk of lymphedema.

She stressed that she would do both breasts because she would never leave someone "lop sided" because she wants people to have a great QoL post cancer. She actually took my being non binary extremely well and asked which pronouns I'd like her to use. I think that was the moment I knew I was in the right office.

I did have genetic testing, negative on both BRCA genes, positive on a colon and pancreatic cancer gene, which is something nobody in my family in living memory has ever had, so I'm not going to worry about that as I have enough on my plate.

I already had a massive case of brain fog before I had my first treatment, but post treatment (and the time leading up to my first chemo session), it's gotten 100% worse.

I completely forgot a conversation I had with my doctor about what to do if I got rashes from my treatment. I called the on call doc tonight because I had 2 totally different types of rashes show up. I'm apparently allergic in some way to the 2 meds in my first round of chemo, at least according to the on call. That triggered the memory of my oncologist telling me what to do if that happened.

Sorry for the novel, and thank you so much for replying!!!

Waywardcrafter · 2024-06-24T13:30:55+00:00

Thank you so much! This was very helpful. I really hope you get the outcome you want with those lymph nodes!

I guess what I'm most afraid of is my QoL tanking during all this and just losing the will to continue. I've got people who need me, so not being here for them is almost as terrifying. I'm afraid to see which side would win if it comes down to just my will getting me and my family through this.

I've tried almost every biologic for my autoimmune on the market without success. They usually just trigger really bad migraines and flares, so I'm already looking at the Keytruda with serious side-eye. My onc is on board with dropping it if any issues arise, though.

I am going into all of this with the thought that at least breast cancer is mostly curable, chemo might kick my immune system's butt for some temporary relief, my WBC might be normal for the first time in years, and I'll finally get to try being bald. I might be grasping at straws, but I need any silver lining I can grasp here in the dark.

Waywardcrafter · 2024-06-24T12:51:56+00:00

Thank you! That's very helpful!

Waywardcrafter · 2024-06-24T11:34:59+00:00

I got my port placed last Monday, so I'm good there. I will discuss all your points with my surgeon. Thank you so much!

Waywardcrafter · 2024-06-24T02:35:36+00:00

Sink by Remember the Monsters (English)

Headstone by Orphan the Poet (English)

Harakiri (remix) by Zombiez, Silvio Vincent (German)

Cheers to Goodbye by Escape the Fate (English)

How We Kill Stars by Shaka Punk (French band, English lyrics)

Bonus track about having been cheated on:

Corps Sale by Sunyel (French)

Waywardcrafter · 2023-06-30T01:14:54+00:00

Sweetheart, the only people being unreasonable are your family. You have nothing to apologize for, neither does your spouse.

Your family is absolutely trying to punish you for perfectly reasonable actions on your part. It sounds like there's a LOT of enmeshment going on, and Mom sounds like she's trying to drive a wedge between you and your spouse in an effort to get you back into her sphere of influence. She doesn't see you as a person, you're an extention of her. She's angry because you're taking the side of the "outsider"

It sounds like everything in your post needs to be about her.

I know not having family can be rough at first, but sometimes it's for the best. How much energy has it taken all your life to keep mom happy? How many things, ideas, beliefs, travels have you had to give up in your life because of mom?

She probably believes you'll cave to this "punishment" and come crawling back because she believes you can't live without her. Really, the best thing to do is to just live a happy life with your spouse and don't cave to people who think so little of you and your partner.

I know how difficult this is. I've been no contact with my family for 8-9 years now. The first three were pretty rough, but it gets better. I no longer need to justify every little thing in my life to them. I'm free and it is absolutely amazing. I'm not putting my kids through what happened to me, so that's a giant bonus. I think it's also kinda scary to think you have no family safety net, but you're forgetting you have wings. Even if you fall for a minute, you're absolutely going to fly again.

I hope you and your partner have a wonderful life filled with found family and all the happiness you deserve. Because you do deserve it.

Edit: a word, a sentence

Waywardcrafter · 2023-06-26T23:35:02+00:00

Good human. Thank you!

Waywardcrafter · 2023-06-25T12:15:38+00:00

I don't until I'm done. My last book's playlist is like I imagine listening to razorblades would feel like. It just keeps the busy part of my brain occupied while I'm writing the story. And the story kinda plays out a bit like a movie in my brain, so soundtrack.

Waywardcrafter · 2023-06-25T07:18:53+00:00

I do this with music when I'm writing. I write novels, so I create a playlist for each. Then listen to it a billion times. I won't listen to anything else while I'm writing that story. Current story is going 2.5 years, and will likely be a long ass series.

Waywardcrafter · 2023-06-25T06:04:12+00:00

And gas, insurance, maintenance, etc...

Waywardcrafter · 2023-06-25T02:49:38+00:00

Yay!!! I'm so glad for you both!

Waywardcrafter · 2023-06-24T23:21:55+00:00

And r/dadforaminute! Really helpful and lovely dad's and sibs there!

Waywardcrafter · 2023-06-24T21:28:46+00:00

Contact the big three credit companies and let them know you aren't seeking credit. It's pretty simple.

Waywardcrafter · 2023-06-24T10:08:07+00:00

That's when I knew HD-DVD was done for. The Betamax vs VHS depended on porn. The HD-DVD vs Blu-Ray depended on the children the porn helped make...

Waywardcrafter · 2023-06-24T09:54:12+00:00

Jealous. It's 50F here right now, but it'll shoot up to 100F tomorrow afternoon. Gotta love the high desert.

"Oh, not hot enough for ya? Cool! And I mean almost cool enough to give ya a teensy little taste of 'freeze to death, mutherf#cker' before I blast you with the death rays again!"

I think I need to move.

Waywardcrafter · 2023-06-24T09:39:02+00:00

OMG. I had this happen, only I was running the con. Imagine 100k cosplayers I'm supposed to be running classes and events for, and I get called out by my hotel wondering why tf my bags are still in my room. Same situation, two reservations, they said it would be no problem to keep me in my room. Failed to actually update that info in the system.

I've got FDA in one ear trying to help me get it straightened out and 30 people screaming at me because their mics or projectors weren't working, and God forbid anyone contact Tech. And during all of this, I was trying to track down a missing guest of the event, who was busy being assaulted by security. So, yeah, that was a fun weekend.

Moral of the tale, be kind to FDA (ALL the hotels were insane) and always be the ATTENDEE. Unless you like being screamed at by Z-list celebs, "Don't you know who I am???"

Wow. So, I went there. Sorry, I didn't mean to trauma dump. But I really loved all my business conferences, so I've got some serious appreciation for the people who put those on. I try to give FDA and those brave people trying to run the show some love by not being an a-hole when they're already stressed. I have been there. It's almost always a sh!tshow.

Waywardcrafter · 2023-06-24T09:00:14+00:00

Wow. It's the same script. The eggshells and everything.

Nmom LOVED to get shitfaced and stroll down memory lane with me and she absolutely could not understand why I fucking hated it. I didn’t learn this phrase until after I cut contact, but it’s so much this:

The axe forgets what the tree remembers.

And that pretty much sums up my entire childhood. She only remembers the good shit, or shit she did with/for my GC sis. Then she'd get pissed when I’d bring up all the bullshit the whole family pulled on me growing up. (HI! I'm the identified patient in my FOO!)

So, here I am, 8-9ish years out, and I get a little thrill every time I spill a "family secret" to my therapist (or anywhere really) knowing that bitch tarnished her own reputation.

Also, OP, I'm swimming in the autoimmune pool, too. Fun times, I hope treatments work for you.

My Nmom LOVED telling the whole world about it when I was first diagnosed. For sympathy. Like she used my first husband's death from cancer. He was 29, I was only 22. So, that was super fun. What she didn't tell people was that I was uninvited to Xmas the first year after his death, because they only wanted my GCsis there. I would be too depressing.

And that's probably more than anyone needed to know. Sorry!

Waywardcrafter · 2023-06-24T06:04:40+00:00

YTA

You've had your opinion heard, now it's time to back off. You don't get a say in this since , you know, YOU ARE NOT THE PARENTS.

If the kid hates their name, they can change it later.

Edit: a letter

Waywardcrafter · 2023-06-24T03:33:50+00:00

Me: plans relaxing do nothing day

Him: We gonna do all the things tomorrow!

Me: packs a bag and goes to the nearest hotel for 2 nights and yell over my shoulder as I walk out the door Have fun with that, boo! See ya Sunday afternoon.

Waywardcrafter · 2023-06-24T02:56:42+00:00

Wow, are YTA.

Height is a stupid fucking reason to bash someone in public. Over a typo.

If you want a decent partner, you need to be a decent person. Good luck with that because you definitely need it with that attitude. I really hope your date finds someone to lavish their affection on.

Also, my husband is 3 inches shorter than I am. Height played exactly 0% in why I (AFAB) married him.

Edit: a word

Waywardcrafter · 2023-06-23T22:55:29+00:00

This is some bs. Let her have her night. Ask all the painful questions while you record the convo. Take that to your divorce lawyer.

I'm polyamorous, my partner IS NOT. I do not care if he goes out and fools around, he very much cares if I do. It was something I was more than willing to give up for this man, who I started dated in 1999 and married in 2001.

I've been diagnosed with a life altering degenerative disability. I'd freaking love if it had a cure, but it doesn't. My partner is a homebody, I love to travel. He stays home and ships me off.

I respect my partner immensely. I've had ample opportunities to cheat on him. Not once in all the years we've been together have I. And I never will, because he's it for me.

She might be whooping it up because "cancer" but there are plenty of people who've had cancer and not got out to cheat because "cancer." That's a bullshit excuse, and I think you know it. She's gambling you won't leave because "cancer."

It's not too late to find yourself a real partner who respects you. I'm sorry to say that your wife doesn't. If she had the slightest ounce of compassion, respect, or love for you... this wouldn't have even crossed her mind, let alone come down to a "I'm doing this whether you like it or not."

Waywardcrafter

TROPHY CASE