STEAM ROOM FOR ANGER
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ctmbsikia I was just too mad to post I guess. Referred to a specialist over 80 miles away (non cancer related) We got lost getting there. Had to ask directions TWICE!!! Then still had to call doctor office after that still lost. Good thing we left 2 hours early from our house! Doctor spent a lot of time with me and was nice enough but nothing new and ordered more crap to be done which we said we wanted to do here closer to home. He said fine and we could do one follow up 6 months and he's fine with me being seen here by my doctors. Stressful day----in construction----for nothing!!!
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Had a mammo this morning fully expecting everything to fine, BUT they took me back for an ultra sound and I asked, what's up? Just evaluating biopsy sight. Waited some more and tech came back in and said it's good. Post biopsy changes. I asked my score and she didn't know. I couldn't wait to get out of there. It was a long hour and a half. Overall I am OK even if it's a Birads 3 and I go back in 6 mos---it's better than the alternative. Already been there done this last year! I can do it again.
Exhaling. See the BS on Monday.
Taking my personal life approach back to one day at a time, sometimes hours. It helps me stay on task to solve, deal, or get help with whatever it is this life is going to throw at me. Like, the TV just blew up. UGH
Hang in bc, and everyone
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Do you ever feel like your concerns about your latest medical hurdle are trivialized by your MD's? If you hear the words pre-cancer do you hear the "pre" or just the cancer? I had this experience lately and although my concerns were acknowledged, I do feel like my concern was trivialized because the lesion was "only 2 mm" and this was hammered home multiple times. Well, my BC lesion was only 14 mm and my breast was totally destroyed by 2 surgeries and radiation. Plus it might have been 2 mm at one point but undiagnosed. I am just so disappointed in my physicians. Can anyone relate?
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Betrayal, yes absolutely. At this point, I'm convinced I won't die from some grand explosion of disease but by 10,000 dinky things all minimized by my doctors. I have dinky tumors on my kidney, I had a dinky melanoma, my breast cancer was 5mm so also dinky, and my DEXA values are just barely osteoporosis so also dinky (yet my pelvis fractured while running two years ago and this year it was my foot).
Yep, I'll die from something dinky I'm sure.
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Betrayal, I hate to say this but, get used to it. I've been dealing with the medical system for serious health issues for thirty years and have watched it slowly deteriorate. I have some good doctors (they're out there) but the quality declines regularly. Who would sign up to be a doctor now? And I really feel sorry for older doctors who certainly did not sign up for the current situation where insurance and big pharma control the proceedings. I've become entirely resigned to it and am pleasantly surprised when I have a good experience.
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I LIKE being told something is small and not to worry about it, just keep an eye on it and get re-checked every six months. That's a huge relief after big bad news too many times!
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That's great, Alice. However your experience is not my experience and I will gently say that I don't appreciate you minimizing my experience. Guess it's a dinky experience.
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Thanks for your responses jaycee49 and edj3. This pre-cancerous lesion is sneaky, is highly malignant if not fully removed, and has a tendency to roar its ugly head within 2-5 years. So my concerns were in one sense validated by a 3 month and then a 1 year follow-up in 2021.
It is enough that my MD's minimalize my concerns. To each their own Alice, I am glad for you, but not everyone thinks alike.
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Everyone has their own level of acceptance I guess. I've been slowly finding out that if I just accept that I'm still here and maybe for some time, alone, however much it sucks, if I don't think or plan too far ahead, live one day at a time, it feels like I have more control. I simply refuse to fall into a pit of despair. I've come close to the edge, but then I have to take hold of myself, turn around and walk away from that hole.
Having some issues at the house, TV on it's last leg, landlord issues. Both kids dealing with stuff and I am trying to support any of their needs, you hate to see them in any sort of pain. I joke with friends who have listened to me that sometimes I'm ready to light a match to the place and be done. Once I say that though, I feel a bit better and get back to ONE thing at a time.
Still waiting to read my reports. I hope they come before Monday, but I am actually much calmer. If they come they come, if they don't they don't! Searching and reading a little what I have going on is not uncommon. Maybe this time say next year, it will look better. For now, I am OK and I am receiving excellent follow up care. Although I'm still anxious at times, I feel it's getting better. It has to.
I see a lot of topics popping up with the dimples, dents, growing fibrodenomas. I wish I could help some of those ladies. I don't know quite yet what to tell them.
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I was NOT minimizing anyone else's experience. I merely stated my coping style and hoped it might help someone else to reset their anxiety if they tried to think this way. I have put up with my share of health crap and this is how I get through it.
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The doctors think DH and I should be put in a rubber room sometimes with how we deal with stuff. Between his transplant, my cancer, and now my other life issue to kill me affecting my brain and my speech (early onset frontal temporal dementia with primary progressive aphasia). It is a game show at our house communicating sometimes because I can't get words out of my mouth and do charades! We laugh. We figure if you do not laugh you will cry all the time. We do not freak out about things anymore at this point and most people do. They think we are crazy but it works for us and keeps us going.
For us laughter is healing.
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bc - Truly sorry to hear about new diagnosis. I can't recall the name (Aricept?) are you taking? I hope it significantly delays progression for you. Also, nothing wrong with your work arounds. Laughter is great medicine!
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Thank you ctmbsikia. I am not 60 yet (3 more months to my birthday). Fighting it all the best way I can right now and keeping cancer off my back the best I can in the meantime.
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bcincolorado I'm a few months older than you are--go 1960!
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Wide awake at 4:30am. Once I figured out what day it was it's not so bad-Saturday if I fall back asleep don't have to worry about being late for work.
My mammo report score is back to a birads 3. Developing asymetry at the biopsy/lumpectomy site likely a seroma. 0.9x0.9x0.5. Truly amazing they can see that!!! Let alone measure it. While I'm fine and find this is really unremarkable-I do now have 2nd thoughts of why didn't I just get rid of this breast? My other side is doing fine. Have a follow up with bs on Monday. #smallsigh
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Sorry. Still scary and felt the same way at my mamo when they found my cyst after re-scanning me twice and then doing US. Because of BC history at least my center reads it right away and tells you before you leave if you are ok or not. I was about in tears though before it was over. At this point kind of felt like if it was another cancer on that side would I even bother to treat it and what would be the point and why and I putting myself through this?
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BS gave me the option to surgericaly remove this thing but that’s no guarantee a seroma wouldn’t returrn, or get fat necrosis again. I wasn’t expecting that so no way I could make that decision on the spot and it’s perfectly fine to do the wait and see. She also said she could stick a needle in my hard tissue (the post surgery one) to see if any fluid comes out but I said no.
I wish this would get better and should it not then yeah I’d probably say cut it out. Next year though. I’m so done with 2020!!!
She ordered MRI for January and another mammo in April. I’m disconnecting myself now. Refuse to give this another thought until it’s time to schedule.
Overall a good visit. I told her about losing my husband. She let me talk about it and listened. She encouraged me to keep going, day by day, and went on about the benefits of exercise. She said some stuff I didn’t know so Iam grateful to her for that encouragement.
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I hope it is okay if I jump in to vent a bit about my husband. We have been married for well over 30 years. I always thought we had a pretty good relationship (as all relationships...at times it has been better than others). Well, cancer has shown me that I am all alone. He initially showed concern and was helpful during my lumpectomy. Since then, he has totally checked out. He ignored radiation, despite me telling him I was struggling and upset. He didn't even know it was finished even though my certificate of completion was on the fridge. He never asks about me. Never once has he asked me how I felt about being diagnosed with cancer and how I was handling it. I had a physical last week and he never asked about it. The vaccines caused me to have a low grade fever so I told him. At that time I told him I had to have a pelvic ultrasound as a baseline since I am higher risk for ovarian cancer (due to either the hormone suppression or having breast cancer...I don't remember) and my primary (love him) thought a baseline u/s would be good to have. My husband hasn't asked me one thing about it. It is today and he has no idea. I have talked to him repeatedly about all of this. I have cried, yelled, pleaded, spoken to him, put it in e-mails. I have done every single thing I can to get through. I told him I have never been as alone in my life and it is the time I have needed him the most. I also told him he is ruining our relationship. Nothing has gotten through. I have been dealing with pretty severe pain for a few weeks now (Letrozole). I told him. He ignored me. My daughter told him, he ignored her. Yoga is helping it, by the way! But my husband has checked out of this relationship. Yet he thinks he is doing such a great job. How do I know he thinks this? Because every time I talk to him he denies all of this and gets super defensive. I have given up. I don't expect answers or help. It is beyond that at this point. I just don't want to be going through cancer alone. I don't want to be eating my feelings and disappointment and gaining weight. I am so lost and so alone. Even the sweet lady from church who is assigned to check on me doesn't really ask about me, the few times she calls we talk about everything else. At this point if I had the means I would just leave him and get a divorce (yes, I have told him that too....he ignored it). He isn't a cruel or mean person typically so I am not sure what has happened to cause all this,and it doesn't matter. I am the one going through cancer and I am doing it alone. Anyway, staying is my only option right now, but I just needed to vent. I wish someone cared about me and that I didn't have to go through this alone. My plan had been to have a mastectomy next year if it is possible, but no way am I putting myself through that knowing I won't have any love or support during recovery (except my sweet daughter...but no way am I putting that on her shoulders). I'm sorry this has been so long.
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I'm sorry cm2020. I know it is frustrating. Feel free to vent here.
I too have been married forever and a day and now my husband gets frustrated sometimes too. I did when he was ill as well We kind of learned to "walk away" sometimes.
Because of my new condition I have we found something that made us both laugh at times when we are the caregiver
Special Drug for Caregivers
(We all need a little humor. Do not take it seriously.)D A M N I T O L
Take 2 and the rest of the world can go to $#!@ for up to 8 full hoursIt works best if you , open your mouth, swallow these imagery pills. Now closes your eyes and think about one of your fondest moment from the past. For one minute focus on this special moment. While this drug work on most people it may not work on everyone! If not, keep trying, the pills are cheap and refill bottle whenever! It doesn't hurt to try.
(Note: Do not follow these instructions in public! It could be hard to explain!)
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OMG! the wrong test was done! I've been waiting for numerous months to have my "nerve specific MRI" and finally got to read the report. It was a standard MRI report. Never mentioned one thing about any nerves at all! I'm SO frustrated!!! I've left two voice mail messages and an email and have not received one response. My husband and I wasted half a day to go have this done and all for nothing. I'd like to send them a bill for our time!
cm2020-I'm sorry you are having to deal with such feelings of emotional abandonment. I've been married 30+ years too and can't imagine having to be treated the way you have been. I know a lot of men have a very difficult time dealing with such extreme difficulty. I sincerely hope that he comes to his senses. You need the support!
bcincolorado- I absolutely love that prescription!! I'm going to copy it and show it to my husband. We have developed a fairly dark sense of humor regarding my health issues over the years...
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Glad you got a good laugh! It is from my dementia site since I now have early onset dementia on top of cancer crap to deal with and worry about. DH is a transplant patient and diabetic to boot so we have our share of medical drama in our lives and feel like if you do not laugh you will cry.
The doctors and nurses think we should be locked in a rubber room sometimes I think because we don't freak out all the time about stuff now at this point. We've both tried to die a few times on each other so oh well! Take a few Damitol pills and call it a day!!!
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BCincolorado, I copied and pasted the Damnitol thing. That's hilarious. I'm going to add it to my list of meds.
Thanks so much for the laugh!
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cm2020
Your cancer surgery and treatments are still pretty recent. Although my husband was more outwardly supportive, I did mention to him once that I was surprised he hadn't reacted more emotionally. He's usually the mushy one and I'm the cold fish in our family. He told me that I hadn't been with him in the car when he was driving to or from work and had to pull over to cry and beat his head on the steering wheel. I appreciated hearing that, because when I thought about it, I would have HATED if he'd done it in front of me. I didn't cry or get emotional over having cancer so if he'd done it, I'd have been irritated. I think he did make a moaning noise when the oncologist told us I also had kidney cancer at the follow-up after my lumpectomy, and I elbowed him in the gut because I did NOT want to deal with his emotions just then. So maybe your husband is just being stoic and pretending everything's hunky-dory around you or your daughter? Also, those of us who had lumpectomies and no chemo get a mental label of minor surgery = minor cancer from other people, even our nearest and dearest.
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cm2020, I can't imagine how you are going through this. I've heard it said that the loneliest lonely it when you are with someone and you are lonely. Years ago I was married and experienced some of this. I hope you will continue to pour it out here if that can help. Thinking of you.
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cm2020, I think this sentence of yours contains some hope and a clue: “He initially showed concern and was helpful during my lumpectomy. Since then, he has totally checked out.“ I would talk to a therapist/psychologist who works with cancer patients to get some insight and ideas on what to do. My cancer center therapist often helps me understand my DH and Kid In relation to cancer stuff and gives me ideas on how to approach them.
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Thank you all very much for the support, advice, and understanding. It means so much to me and I really appreciate it. This has been such a lonely and scary year and the hurt I feel from essentially being deserted by the one person I never thought would desert me has been beyond what I can put into words. I have read every word and you guys are truly just awesome.
AliceBastable.........I think you are very right about the attitude many have about this being a "minor cancer" due to no chemo and lumpectomy. It absolutely sucks.
bcincolorado...Damnitol is fantastic! Thank you.
CTLMom....That is horrific that they did the wrong test! I am SO sorry! Please let us know what they say when get a hold of them.
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Virtual hugs to you all!!
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Elle mag did a story on Shannon Doherty and her stage 4 bc dx. It's online now. It set my teeth on edge with bizarre messaging about 10-15 yr survival. Yay for talking about metastatic disease but very misleading about average prognosis
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CM2020, Lots of wise words here and I think AliceB nailed it with 'small cancer = small support. I have also been married for well over 30 years and I remember the day Hub said, "I can't save you from cancer." which initially sounded very cold. But later I thought it must have been utterly defeating and terrifying for him. He is a fixer and builder and problem solver (of mechanical type things). But me? And cancer? Nothing he could do would change a damn thing with how me and this disease end up. He is in for a ride, just like I am and neither of us know the when or how of it. This makes a person feel...alone.
But he also said not too long ago, in regard to us getting older, "We are going to face some sadness and health problems in the coming years." He was talking about our elderly parents and saying how we need to do things to make time for them. But I'm looking at him with my mouth hanging open as I thought, "Dude! How much of a memo do you need that the sadness and badness has already arrived in the house?" Because it's business as usual around here. Like nothing every happened. Get up, dust yourself off, it was only cancer and a minor cancer at that, entry level cancer, beginner cancer. so get on with your cooking and cleaning, the world can't stop for you, I can't stop for you.
CM2020, as someone else pointed out, you are very, very new to this. You cannot expect anything to feel normal or sane or rational at this point. It's just too raw. A cancer diagnosis yanks you out of your old life and plunks you down in some drama you didn't sign up for and don't recognize. The unfamiliarity of everything has a way of making you feel disconnected and unhinged and it is almost impossible to feel support when you are thrown into this altered universe. I remember after my diagnosis, still waiting to be called in for surgery, sitting in a restaurant with Hub, watching cars go by, people walking down the street, the waitress pouring coffee, slicing pie and carrying it to people. I looked at my hands on the table and my Hub across from me and it felt like this thick, glass cone had been placed over me and I could see everything, but I was not part of it. People could see me but none of them could reach me. We were separated by this invisible wall that moved me from my before cancer life to Someone With Cancer. I no longer understood the language of those familiar looking people and they didn't understand me. The experience yanks yuo out of everything you know and makes you a stranger in your own life. It is almost impossible to feel connected to anyone in the thick of that. And that might be where you are right now. It will get better. Slowly. Which doesn't help, I know. That was my experience and it might help you know that the aloneness you feel might have to do with the situation more than your Hub. I hope.0
