STEAM ROOM FOR ANGER
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I was adopted as a baby too. I found the papers while looking for Christmas presents when about 8-9 years old.Had no idea what all that meant. Had a big fight with my mom, told her to send me back where she got me. She told me what she had been told. So 36 years ago, before we moved here, I decided to search. Spent hours. Finally went to state records for my birth certificate. Clerk there screwed up and gave me the original with all the real names. Was fairly easy to find birth mom then, and I did. Non adoptees have no idea what it's like to see someone you resemble. Birth mom also told me the truth about how I was conceived, different from what mom was told. That my bio father married, and I have 4-5 half siblings who didn't know about me. Still don't. My DD likes Ancestry.com, contacted a cousin on bio mom side. He backed up all of this.
Oh, I was breech too, been raising hell ever since!!!
So I had a fairly happy ending. Not sure at this point I'd ever like to meet any of them. But be prepared to have things blow up in your face too.
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Spookiesmom, when I emailed my dna match I included a picture of myself. I told him it would be amazing to see someone I resemble. I wound up texting with him yesterday and he sent pictures of his aunt and there is definitely common features. It appears his grandfather may be my birth father. He was a musician in the 60's who traveled a lot. He died 4 yrs ago.
I have no idea where this will end. I'm not sure I want to meet anyone but it's a nice diversion from cancer.
Except he texted "take care of your breast health" last night. I asked why and his mom and both aunts have had breast cancer. His mom had a mastectomy monday. One of his aunts died from it at 41. Amazing!
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That was one of the reasons I searched. Medical background. Back then, it wasn't considered important and not given. I didn't have close contact with her after we moved. Found out she died several years after she did from complications of diabetes. Which I have. So there's that. No mention of cancer.
Hope it all goes well for you.
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Bella, thank you for sharing that is helpful. Of course I can't say that's exactly what's happening but it makes sense and he does have some diverticulitis. He's on day 7 from treatment. He is getting CT scans tomorrow morning. Hope we can keep him out of the hospital.
Dawn and Spookie, I trust you will find what you are, or are not, looking for.
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I am feeling angry today because I just had a conversation with a friend who has liver cancer--a former opiate user who also had all of the hepatitis's--A, B, and C. He has nodes all over his liver and elsewhere, and he denigrated me for believing in, and participating in, traditional medicine. I have no problem with his choice to not treat his cancer(s), not with his ultimate plan for easing out of life, but I'm pissed off that he thinks that I mad bad choices to go with traditional medicine. Grrr.
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Well, unless he was growing his own poppies he certainly believed in some traditional medicine, didn’t he
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It sounds like he has a history of questionable choices. Perhaps he knows that deep down, but won't admit it, so he criticizes your rational choices.
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I let things roll off me. Not worth debating a lot of stuff anymore. It has to be really important to me, and choices people make even if a dig is made at me is meh on my energy level.
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I let most things roll off me now. I won't give anyone the satisfaction. I just smile sarcastically but don't respond.
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Chick, you did what you thought was best for you. No one should fault you for that, no matter who they are.
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Was just reading results of hubby's CT scans. It's a mixed bag of good and bad. If you recall he has small cell extensive stage lung cancer. Extensive meaning he had mets everywhere except his brain @ diagnosis. After 4 cycles of immuno/chemo therapy amazingly his primary tumor is gone! His lungs are clear. No pleural effusion. There is, however, evidence of metastatic disease showing in several locations. Liver mets improved/regressed. There is a pesky 16mm lesion on his pancreas which says clinical follow up recommended. Suspicious L3 (new), and anterior mediastinum nodes (new). Need to understand how they know they are new and not being resistant to treatment?
So have questions about what will we do with the pesky pancreas, will he be able to have radiation to his chest since lungs had a full response, radiation for the spine mets, and are we continuing to 6 full cycles of the immune/chemo. I can't think beyond that. Yesterday I was researching 2nd line treatment and was pleasantly surprised to learn that if he is stable for 6 months or longer, he can have this same treatment again. If he progresses under that time, it will be some other chemo drug. Again, I try not to go too far ahead but need to sort of know what may or may not happen. We see his MO on Thursday.
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Shannon Doherty announced is stage 4 today.
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She's only 48. Sucks. I missed the segment on Good Morning America this morning. Looking around the net don't know what type she is? HER+ TN? Something else?
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I saw the GMA segment. She didn't mention hormone status or type. I think they said there will be more on tonight's Nightline.
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I don't think they'll share anything beyond stage 4 since only we would understand profiles. They would have to give a class so to speak on what all that means. I don't know what stage she was before. She was dxd 3 months before me in 2015. Apparently she knew she was stage 4 for a year now and chose to reveal today because she's fighting insurance on her house that was damaged in fires and it's on record. So she didn't want it to come out that way.
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ctmbsikia so sorry to hear of your hubby's diagnosis. Dealing with one kind of cancer in a family is hard enough but you have a double whammy. Will keep good thoughts going your way.
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Thank you bc.
We saw the MO yesterday. He is an older Doc who has treated folks old enough to be my parents age. Our very 1st meeting with him was not the best. I had looked up treatment beforehand since I was oblivious to the different chemo drugs and I felt like I basically handed him my note on the combination and it seemed to me he was unaware that NCCN guidelines were updated (after about 20 yrs!) in Mar 2019 to this combination. Thankfully he certainly ordered these drugs. He gets Tecentriq/Carboplatin/Etoposide day 1 and the etoposide day 2 & 3. His latest scans show improvement and we spent most of the appointment going over this. While our daughter was present yesterday as well there always seems to be a point where he says this is not curative. Ok, we know, but can we at least be a little hopeful? We are just not fully accepting (YET) he has an expiration date and you see how well he is tolerating this. After his exam he did say "Keep up the good work" His saving grace. His next follow up after treatment is with Mary the NP and all of us love her, most importantly hubby does. Our daughter was a little down afterwards, but this morning I see she posted a little funny to me about Dad in our shared spreadsheet. I was happy to see that.
So, here we go round #5 beginning Monday. Daughter is off school but away with her boyfriend so I am getting ready to just request the day off to be with him. Doing my best to remain calm, and not fall into a pit of despair yet...……………….It's Friday! We do have dinner and a show tomorrow night, I am so looking forward to that and hope he will enjoy himself as well. Thank you all for listening. Stay well, and enjoy your weekend.
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yikes, sorry you are on such a difficult journey. It is really hard when one feels they must do all the research themselves for the best outcome. But glad you are doing so. Seems so unfair!
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I just read this article on WebMD
Family Members Swipe Hospice Patients' Painkillers
In a survey of 371 hospices, 31% reported at least one case in which drugs were taken from a patient in the past 90 days. The thieves were most often relatives. Lead researcher John Cagle said it's not clear if those who steal the drugs are addicted, financially struggling, or both.
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These numbers really don't tell us anything. The study reports 31% reported at least one case of drugs being taken. Is it just one case (or a few cases) per hospice? Just a few pills?
I really can't fathom this. In every case I've seen, caregivers were doing their best for their loved ones. In two cases, wives were being cared for in-home hospice by husbands and daughters; in two other cases, loved ones were in-patient hospice.
Or many the article is just meant to be attention grabbing?
Has anyone witnessed medications being swiped?
Mominator
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Mominator, look at the opioid addiction. Yes, relatives and caregivers are known to help themselves to pain meds. It’s disgusting to think it could happen but it does
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I'm not angry, just very puzzled. I read a post on FB from bc.org about previvors? Say what?
They're people who don't have cancer but have a high risk. This feels really . . . made up to me.
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as a daughter of former hospice patient (2004) fentanyl patches were literally thrown at my mother, those and god knows what else. If this is still going on - addicted relatives can assuage their guilt by rationalizing that their loved one will not live long enough to use half the opiates they have been prescribed. After my mother died I kept a grocery bag full and dropped them off at a drive-through drug take back program at a nearby pharmacy school.
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To reply to your question. Mominator, yes, I have seen a caregiver steal meds. It wasn't a family member, but still.
When my mother was on hospice, and completely bedridden, my sister and I provided her care 24/7. We would alternate weeks, but to give us a little break we hired my sister's friend to help out for 5 or 6 hours a day. Cleaning, cooking, shopping, so we could focus on caring for Mom.
One day my sister caught this person stealing a fentanyl patch. She sent her home and told her not to come back.
We did an inventory and found she had been taking a couple per week. Talk about low. Stealing meds from a dying woman. Never spoke to her again. We hired a night nurse from an agency instead. And we put all the meds in a lockbox. Lesson learned.
Trish
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Edj3, I have not seen the post you mention (I don't do Facebook), but I am starting to understand the idea of “previvor". One of my relatives has the same genetic mutation as I have, and it raises our risk of several types of cancer. So this woman who has not been diagnosed with cancer nevertheless has/had to do the following: Yearly mammograms and yearly breast MRIs (with the attendant scanxiety), yearly colonoscopies, tamoxifen, total hysterectomy, and a lumpectomy in each breast for high-risk lesions. And she is always dreading the day she could be diagnosed with cancer. So she has had to go through a lot of the same stuff as a person with a cancer diagnosis.
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Sure, I do get that.
I just don't know that we need made up term that's supposed to sound like survivor (which also bugs me to be honest). Can't we stick with high risk and acknowledge how stressful that situation is?
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I agree, edj3. My relative and I do not use either of those words.
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Not sure where to post this.
When I was first diagnosed it felt like a thick, glass cone had been dropped over me and I could see and hear everything and everyone around me, but some thick, unseeable force had separated me from them. Had walled me off. Had taken me beyond their grasp. Even as my friends rallied around me, I felt like I was falling down a deep, dark well all by myself. All I could think was, we die alone.
Nearly three years on and life is looking more normal. It will never be like it was before, but things have gotten a lot closer to normal. On the surface. But underneath, the lava gets closer and closer to erupting.
I think it's this. I feel doom. I feel the ticking of time. The ticking of time that was always there, always ticking, but I was deaf to it. Stupid and deaf and blind and blissfully oblivious. Oh, those were the days. But those days are gone. I am on the clock. Yeah, yeah, we all are. But not all of us carry it sharply like a knife in the chest. I can't UNKNOW that I've had cancer and might well have it again, might even have it now, this very second, as I type. Maybe that heavy cough and weight in my chest isn't allergies like I keep telling myself. So I have said to my DH that I need things to change. And I don't need them to change in a bored housewife kind of way. But I need them to change in a desperate, up against the wall, kind of way. I feel the crushing need to get our lives in order in a way that we are braced and able to deal with whatever bad news comes our way because, let's face it, the older we get the more likely the news is to be bad. The older we get the more people get divorced, diseased or dead. So I bring this crucifying anxious life requirement to Hub and.....no. No. Change is bad. I may need change. He does not. So we shall continue as always because nothing is broken. We will cross that bridge when we get to it.
Get to it?! Hello?! Are you stoned? Not only have we got to it but I fell off of it and am hanging by my suspenders from the rail! There is no waiting to get to the bridge, this is critical mass, Buster! I NEED TO GET MY SHIT TOGETHER AND YOU NEED TO QUIT FIDDLING WHILE ROME BURNS!!! I can't sleep at night for the gnawing urge to make changes and get positioned in life to react to whatever comes. I need to get fighting ready. It might not even be for my own illness, what's to say that something might not happen to him? No one can say! But the absolute urgency that is growing and growing in me is swept under the rug by him.
Don't get me wrong. He is not a BAD person. But he is a stuck person. A stone wall. Call him Stonehenge, a massive boulder rooted in one place and one place only. He actually said tonight that "Change might be good for you, you seem to need change, but change is bad for me, it's the worst thing for me, it makes me break down and I don't think you'd like me if I went to bed and never got up again." And in my head I thought, what makes you think I like you now? This isn't just' change', I need. Change makes it sound so trivial, so pointless. What I need is to be PREPARED. I need to feel safe. Braced. Ready for the rest of this unpredictable ride. We can't control what the universe rolls out for us, but we sure can control, to the greatest extent possible, how positioned we are to cope with it. How well readied we are to weather the storm. I lay awake at night on the verge of tears as I know that another day has ticked by and the things that matter to me, really, really matter, just aren't happening. Because my partner will actively block change. He likes things the way they are and the fist that the universe slammed into me, well, it didn't happen to him so the effects it has had on me are my problem. Not his.
Does anyone else feel the urgent need to get things in order, straighten up, do what's required so coping will be easier? Or is it just me?0 -
It's not just you. And the anxiety/fear from that pressing need is suffocating. (Hate that the words anxiety and fear mean I'm nervous/startled AND this gigantic clench/run away too. Seems to trivialize anxiety and fear in the sense I mean, and think you do too.)
Do you have steps you would take right now if he weren't so stuck in his own fear? Do they require his buy in?
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When I have felt like that I said to myself, shit you'll get all this mess organized and then what are you going to do? Wait to die? So I set smaller goals. Is there one little chore you could present to him? Something to make you feel a little less anxious and him not knowing that he even did it?
I don't know. Here honey, can you sign this? It says if I am not competent to make my own medical decisions you have to and this is what I want. Thanks. Then make sure he knows where it is, and boom. One thing done!
We just did wills a couple of years ago. If I try to have the do you prefer to be buried or cremated, well, that conversation doesn't go well. In my mind, it would be nice to get an idea of costs and what not. I know being buried costs more. I still go to the cemetery to visit my parents. Hubby's relatives were about the same age, so they are all literally all buried in the same area. I sort of thought it'd be nice to be up on that hill near all of them too. I don't know though. I really and truly don't know what he wants, or what I want at this point. You know what ? It's OK , it'll come, the stuff will get done no matter if there's only one of us breathing, neither of us, and our kids make those choices. I still have stuff to do, and really don't want to leave a mess for our kids to clean up. It's a slow process. Most of my 50's decade was taking care of elders, processing, getting BC, and then beginning to get ready for ourselves. I'm giving myself to 60. Two more years. Not an urgent chore for me. We have the basics done, but not much more than that.
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