The C Word: trigger warning

[WhiteAngelica]

Trigger warning: cancer

Dear all

There are many folks I would consider friends in this community and if we are not friends persay, I may not know you. My presence on this forum--a forum I adore, I might add--has trickled down due to my own health complications but right now, my presence is whisper thin because of the following. I just need to tell you. I need to write it. I have been hectic since the very start of January because of cancer.

I don't have it. It is worse than that. My spouse, my partner, was diagnosed in the first week of January with stage 3 inflammatory breast cancer. I am a caregiver, and though at the time I thought I was busy, it is nothing compared to the reality of now. The initial shock was a devastating blow and we each nearly lost our minds--though I must be strong, must, and I haven't cried. I am focused intently on appointments because there are so many of them. Cleaning. Pushing past my own health limits because it is impossible to not have a support system with this.

I want to share something I didn't know. My partner just hopped on in to get her first ever mammogram in December, before the holiday. She had no symptoms, and it was just a routine first time appointment. The technician saw something we did not...that the breast looked a bit flushed red and that concerned her a bit. No lumps, no nothing. We weren't concerned until the call backs started and what went from 'I'm sure it's fine. It is just breast density' to 'the biopsy is just to be safe' went to, you have stage 3 inflammatory breast cancer that has reached your lymph nodes. There were absolutely no symptoms leading up to this. This type of breast cancer is rare and impacts younger women, so it often goes undetected. I mean, if she didn't just randomly decide to get her first mammo one day, she would still not know. She would not have made it. I don't know what the future holds because I am so frantic keeping the present tense stitched together and manage appointments and grants and phone calls and money. It's all me running the show now, and that is a scary thought. I myself have lost enormous weight for reasons unknown and have these awful bruises up and down my legs. My medical issue is a very rare congenital vascular one that no one has ever heard of, and though kratom has kept so much of the ugliness at bay, my pain has worsened the more I am taking on responsibilities that a 'well spouse' would. This is not a complaint! I guess my point is here...

-to let you know I value you. And that I wish I was here more often. I literally have no time for anything regarding myself and my broken glasses are held together by some colorful duct tape. Apparently people think it is a cool thing, when in fact I have learned to not give a frack. It works for the time being and time is precious.

-to women, and women in your lives...I was always told breast cancer meant a lump in the breast, but you can give yourself breast self exams all day long and it would not reveal inflammatory breast cancer. If anyone has been putting off a mammogram, don't. If you notice a discoloration of a breast, get a dermatologist involved or a breast care center. I am in a Facebook group with women in their 20s who have this stuff. No one told me this. No one encouraged a mammogram or a genetic test. I am trying to be the person who speaks about this when others don't.

-it is going to be a long road to health if everything goes well. People call it a journey but I'm not a fan. Journey is a band. There are so many steps to get through and we are just hitting the part of chemo where her long, beautiful hair is falling out, strand by strand. There are so many other side effects they don't tell you about, so many medicines, pain. I have to be strong for her, and I have. But I am weakening the last two days. Last night I grabbed a pillow and cried into it. We missed an appointment with Palliative Care today. I am supposed to give her injections. I'm dropping the ball and the ball is also my own body. What she has seen of it has stressed her out and alarmed her, and it is bad but I have no idea how I can address medical care for myself when this is deadly dangerous and life-alteringly essential.

I still order kratom, but am so hectic and frantic that I get to the bottom of a bag and go, oh shit. That was my epiphany today. It is popular to talk about self-care but some of us know it isn't always possible. Many hands make light work, but my hands are two and the only ones here. Yes, I have connected with local resources but you still have to roll up your sleeves and do it and ultimately, this person--the person you thought you'd grow old with--depends on you for survival.

Damn this is a bummer. I'm sorry. I just want to let you know that I've always loved this community and I don't think I often place an order without consulting reviews on DoubleM first. I have the most in common with you all than anyone. This strange and beautiful plant has made us into a community: I mean a real, literal one that extends beyond the internet. My legs are hurting badly. I will make up a kratom now and when I drink this sweet relief, you all play a part in that. Thank you for helping improve the quality of my life for so many years. I wish we could have a convention someday.

Heart,
WhiteAngelica

PS: I am a grammar freak but no time to proofread. My apologies if something reads funky. Time. And why do I need to sleep so much? Things would be going swimmingly if I could sleep 4 hours a night like many moons ago I did. I'd ask for prayers but maybe just blow some sage or sweetgrass in this direction instead. If you have holy water though, toss that in this direction too!

[herbalhippie]

Oh no, I am so sorry! I also got a breast cancer diagnosis on my very first mammogram. No lump. It was DCIS, contained in a milk duct.

I have 3 adult daughters that should have had their mammograms by now as there is breast cancer on both sides, but they haven't. I will push it.

[PistolsAtDawn]

I'm so sorry to read about all of this. My father is going through chemotherapy for a non-life-threatening issue, and that's stressful enough as it is.

I wish I could offer you something other than kind words. If you can think of anything (like maybe I can ship you some kratom so you still have a supply), please let me know.

[Lokey]

So very sorry, I never heard of that type of cancer either, and all of my pain issues involve high inflammation so glad you brought this to my attention. Sending healing prayers and I'd like to send you some kratom also.

[MetalMamaRocks]

I just read this and after 4 or 5 weeks I hope things have eased up a little for you and your girlfriend. Much love to you both.

[mivanqua]

I just read this as well and just want you to know that I concur and I'm sorry you are going through this. Most of us here have your back though in the ways we possibly can from here (which is everywhere but there.) I certainly do. PM me if you want anytime of course,

From childhood, I always thought that a very important piece of information was being left out when it comes to cancer. A part that will tie it all together as well as help treatment. I still feel that way. No idea what that thing is though.



Heart II,

brian

[WhiteAngelica]

You angels. I will write more back when I'm done running around for a little while, hopefully a break happens? I'm a caregiver who needs a caregiver but each day for me is one without cancer and I appreciate it...but I would so much rather trade than see my other, better half navigating through this painful and terrifying process. I've prayed myself out, but faith is survival so I keep it, and that includes so much from your kind words and caring. More after I prepare food...love to you all.