STEAM ROOM FOR ANGER

ctmbsikia

edj3- there is nothing wrong with advocating for yourself. I feel your pain. I also still have pain on my left side and have proven fat necrosis in there. Between the surgery with a fairly large tumor, radiation, post op seroma, a weight fell on it about a year after, um yeah. Ouch. Mammograms do hurt, I just hope no more biopsy's for awhile. That really hurt. I hope if you do get an MRI done the scar tissue won't light up as enhanced and/or suspicious. You don't want that. Good luck. Let us know how it goes.

I heard back from my insurance co today and it's a NO coverage on the Prolia. Dr. would have to send an appeal, I don't think they did, and I'm just over it. I'm not going to bother them with it. They should have already done it. If I break a bone, I will just sue! UGH!!. I'm laughing out loud too. I fight authority and authority always wins!

JRNJ

edj3, I hear ya. I'm so frustrated with all my Drs. ignoring my problems, downplaying my issues and making mistakes! The only positive is you are getting an mri out of it, which I should have had years ago knowing what I know now. And they tell me now, I can't have any scans at all with a bmx, which really pisses me off.

runor

Edj, my damn boob started hurting, in a serious way, mid 2016. Kept hurting through surgical biopsy, lumpectomy, radiation and then for the next two years, every damn day and every damn night and all the hours in between, my boob HURT. I would get into bed at night, swelling from the damn lymphedema all on my ribs, and in my armpit around to my shoulder blade, piled up under the underwire of my bra. My boob was this massive, rock hard object that hurt like hell. Trying to sleep on my stomach, forget it. Or if Hub flailed an arm in the middle of the night and whacked me on the boob it would make me gasp and tears come to my eyes. I remember reaching a point where I was SO DONE with the pain and swelling everywhere. Then, several weeks ago now, I went hey...my boob doesn't hurt (jab, jab, flop, wiggle) No. No pain! What the hell?! I think it was all the extreme physical labour of shoveling, raking, picking up, loading trucks, unloading trucks, cutting up by hand and throwing stuff on fires.... weeks of it, that just tore apart all that scar tissue that was bunging up and grabbing on to everything in there. That's my theory anyway. Easily two and a half years of unrelenting boob pain before it cleared up. Edj, you are very active and I hold out hope that given enough time and activity, the pain will resolve. Until then, feel free to TELL the mammo techs how to do their job. Yes, it is their job, but it's YOUR boob and I say speak up if you have to get your boob squished. I have never told the mammo ladies anything because I have always been able to cope with the squish. But when the dentist sprays cold water on my teeth during a cleaning, that's a whole other ball game! They know now, because they have been TOLD, don't you EVER do that or that naet little tray of tools will be drop kicked all over your office as I flail and convulse in agony. So no cold water on the teeth! They give me a little cup of warm water to swish with. Special treatment for uncooperative patients. 

bennybear

that can be the problem with MRIs, previous scar tissue from an old biopsy lit up and resulted in three more biopsies, sigh! No easy way, I just do the Mammgram and ultrasound on my remaining breast.

ctmbsikia

While I'm still a little stressed with the insurance company deciding to dictate my healthcare, I was going to just cancel everything I have to do for the rest of 2020. I already have an onslaught of claims and owe thousands from all of my husbands stuff. But, maybe I will just wait for a little bit. I am to schedule a mammogram and see the BS in Sept. Now, if they give me any grief authorizing this test since it is only 9 months and not 12 (BS did put some other diagnosis code on the order), then I will quit. Next MO appt. is in late December. I am going to cancel that one until I have a new plan for 2021. I hate insurance companies and having to worry about this and anything else you have to learn to traverse through. They make things so complicated and my brain simply does not have the capacity to comprehend all of it.

My daughter and I went down to the beach cottage yesterday. They were working in the one next door, framing it up. Ours has some materials the owners dropped off ready to go. I sent a video of the place to my brother. He's an electrician, need to get him, a plumber, and carpenter down there and get this done. I may be setting the bar too high by wanting it done this season, we shall see. At least we can enjoy being there if only for the day as it is only an hours drive from home. The water was wonderful!

Since we planted a small garden I have to take care of it. Must dress in full gear going out there. Last night I about got eaten to shreds since I still had my suit on. Watering, weeding, and mowing grass around. It is sort of like therapy. Right now I am not angry about having to do it myself. Groundhog is eating the 1 cucumber plant. If I do get pissed off I will throw a firework down the hole and just blow it and the whole damn thing up!!

Looking forward to having dinner with a few of my high school friends tomorrow night. It's my turn to host. I haven't really cooked in weeks, so I am keeping busy today and tonight prepping the meal. Cucumber dip, BBQ pork (on a roll if you prefer), roasted veggies, and I will pick up some KFC cole slaw since it's the best. My one friend is bringing a dessert. I don't do desserts much, whenever someone asks what they can bring, I always say "dessert." The BBQ sauce is a recipe I found that is heavenly. It's pineapple juice, brown sugar, ketchup and a few other ingredients.

That's all I got for today. Well, one more thing. You might think I'm weird but there's a little white butterfly that appears to me in different places and I think it's hubs checking up on me.

Beaverntx

ctm, not weird if it is comforting.

Cowgirl13

Definitely not weird.

jaycee49

Not weird. About ten years ago, a very close friend killed herself. (long story) For about a week after she died when I was sitting in the chair I always sat in to visit with her at my house, a dove would perch on a branch of a tree outside my window. I didn't even have to move my head to see it. Doves had never perched in that tree before. And there was this beautiful cooing. I knew it was her.

edj3

JRNJ I don't have an MRI authorized yet. That's why I'm switching.

runor, I am going to have to ask for the warm cup of water at the dentist! That's brilliant. And yes, you're right, I do lift weights so I know I'm keeping things strong, and because I'm a stick I do a lot of flexibility work so I won't be that old lady who has to turn her entire body to see things on either side of her

We have a four day weekend this week. So incredibly glad.

AliceBastable

ctmbsikia

Not weird, just very comforting.

PMML

Just need somewhere to vent. I’m angry today that I am not the woman I used to be! I’ve always been strong and independent, hard working and able. I’ve had surgery, had 15 sessions of radiation, don’t need chemo but do take tamoxifen. This is my third week since rads finished but I’m still bloody exhausted so for a second day this week have come home at lunchtime. And then I’m too damned tired to do anything around the house. It all came to a head this afternoon when an elderly neighbour came to tell me off for not having raked the leaves and they blew up her driveway! I know the leaves need raking but I don’t have the energy. And I’d get my son to do it but it’s rained the weeks he’s here and he doesn’t live here full time because my husband left me for another woman. I’ve cried for two hours now and am angry about that too! And there is no one to complain to because my sisters are too scared to talk to me after I yelled at them for not visiting our mother in hospital last week (they live 30 minutes from her and I’m six hours away)

edj3

Oh PMML I hear you on the exhaustion. It was infuriating that the radiation exhaustion lasted six months--I'm the Energizer Bunny normally only all of a sudden I was more like a slug. So frustrating, so exhausting and so not me.

mistyeyes

PMML - I know how it feels - I had Chemo and 36 radiation treatments and I think it was almost a year before I felt normal. I was starting to think that it was going to be how my life was = just always tired. It got better, but took a long time.

bennybear

PMML my fatigue from the rads is what did me in! Finally after a year my doc ordered sleep tests and found I also had sleep apnea, which I blame on the rads. Suggest that after a few months you get checked just in case. Wish people could be a little more understanding!

hapa

PMML - rads did me in too. I freaking worked out all the way through chemo, but rads man, rads sucked! Be kind to yourself, and yes make sure you are getting enough RESTFUL sleep. Getting sleep under control was what moved me from patient to survivor. Lack of sleep is a negative feedback cycle that feeds into itself.

ctmbsikia

Today is my husbands birthday. It's not going well. I asked for 1/2 day vacation so I can get out of here. Pink Floyd's Wish You Were Here was on the radio driving in. His sister was out tending to the garden this morning and sent me this:

ddfair

PMML

Rant away. That's what this thread is for. I took off work for the last half of radiation treatment. One of my coworkers was unhappy about that because after all "It's just radiation, not chemo" Mind you she had never dealt with either but somehow felt she was an expert on the subject.

What surprised me about the side effects of radiation, at least for me, was how it wrecked my concentration abilities. I couldn't even pay attention to a 30 second Comercial. It gave me real insight into the lives of my students dealing with attention deficit disorder! I was so afraid I would never recover my mental abilities.

Be kind to yourself, it will get better with time.

edj3

ctmbsikia I am sorry. I think the first year of significant dates/events without him will be hard. Sending you love, you aren't alone--we are here for you.

bcincolorado

Sorry and know you are missing him.

runor

Ctmb, that's a hard one to take. That pic of the empty chair and flowers got me right in the heart.  I can only imagine how it hit you. Sad hugs.

edj3

I'm feeling so incredibly justified right now--remember the breast pain I've had for the last year? And the ugliness w/ my BS about getting a mammogram (with the implied "you are a big baby, suck it up")?

I went back to my RO who offered to do all the breast follow up--this was actually the annual check up with her after radiation. She took the time to listen to what I said (pain since last July etc. etc.) and then actually examined me. She described what tethering would look like if I had it and as she described it I thought "did you peek at my breast already" because that is exactly what I have. She's putting in the order for a breast MRI because she knew that a mammogram was out of the question.

I feel heard and I know I'm getting great care now.

So screw you BS who thought I was a wimp.

bcincolorado

You at least need a peace of mind either way and to not be ignored. Glad you thought to get the care you need.

edj3

AND AND--I already have an MRI scheduled. I LOVE my RO so much. I cried in that appointment today, was such a relief to be heard.

bennybear

so glad you listened to your gut and got a doctor who listened to you. They’re worth their weight in Gold. I have the best BS, my onc not so Much! I hate when one’s concerns are written off without them really listening!

KIDI919

Finished rads in Feb 2020. I had routine labs done last week. My TSH level was 5x's the normal. So now I'm on thyroid med. I emailed rad dr. and asked if it was caused by the tx's. Of course he said no -- could have " happened " at any time. HMMM. Anyone else find that this happened to them?

JRNJ

edj3, So glad you got resolution. So frustrating that its such a process to get it. I'm miserable right now on Lupron and Aromasin, and I don't feel anyone is looking out for me or trying to help. My MO makes a face and says, "I gave you that one because it usually has the least side effects." And "I never seen those side effects from Lupron before". I swear I think the Drs. need to do some googling, because I always find my side effects when I do.

KID1919, I had a lump in my throat that started the first week of radiation and ended 3 weeks after radiation and the Dr. said, that's not from radiation, maybe it's from laying on the table with your arms up. I'm so sick of them all lying!!! My TSH is normal though, just got it tested.

edj3

Yeah when I hear "I've never heard of that side effect" I do want to ask "so do you believe I'm lying, is that where we are?" Or the other statement: that's such a rare side effect (usually said in a doubting voice). To which I've replied, "yes but the chance of that happening is a number greater than zero, even if you personally haven't seen it before."

jaycee49

I'm pretty sure there is a handbook for oncologists that says patients are stupid and/or crazy and should be treated accordingly. I read a lot of cancer memoirs and I'm here a lot. It is very common for oncologists to blow off patient reports of side effects. They even do their own little research studies to prove that patients who know about a drug's side effects are more likely to have them. Very self serving. Since there is usually nothing they can do about side effects, denying them is most efficient. And easiest. Always choose easiest.

jaycee49

Part of the handbook ... yikes

The above is a link. The mods are in the process of breaking the software.

Beaverntx

Medical students often develop signs and symptoms of whatever disease they are studying. Maybe as doctors they assume that is true for their patients? I prefer knowing what to expect...