STEAM ROOM FOR ANGER
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Thanks bc. How are you doing?
I called my sister over the weekend. She is doing well but nervous/scared about starting the new treatment (Ibrance). She is starting w/100mg. I was glad to hear that, as well as she actually read her PET report. Most times, she's just lets her MO explain. Anyway, her uptake was not too far over what is considered normal. So, here's hoping she tolerates this well, blood work stays good, and if she does have some side effects at first, they may subside after a couple of cycles. I did my best to remain positive though our 2+ hour conversation. She is positive-however when I was telling her about the landlord and my problem I broke down and she ended up consoling me! Also, right on que, I received a called from my little brother last night. Have a feeling he was asked to check on me. I have wonderful siblings. Thankful for them.
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Glad you have a good support of family around you ctmbiskia.. We are hanging in here. Fighting my cancer and dementia. DH is approaching 15 years post-transplant (has almost died about 3 times since then though) but we are hanging in. Trying to keep track of my mother who is 83 and lives 3 miles from us in independent senior living as well. It is a challenge at times since she had some issues where she fell and hit her head and had to come stay for a few weeks too here. Lots of medical drama again. Ready for life to get back to "normal again" at some point but who knows when that will be ?
Doctor told us we should travel now while I can still do it and enjoy the time we have but then COVID hit and we are isolated and trying to wait it out and fight and hold on. Don't know how long I can though.
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ctmb, I have been on Ibrance for almost five years and it is the easiest tx ever. It is good that your sister is starting at 100 mg (middle dose, comes in 125, 100 and 75). I have been on 75 mg the whole time and it has been effective. There is a very good Ibrance thread here if she wants to dip her toes in the pool. I know some people don't. I get that. But we are here if she does.
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I sure hope you two will be able to get out and travel too. Are you taking aricept or memantine? If so, I'll pray that it significantly slows progression down and gives you the time you need.
Disease and death really suck. It's hard to accept some days. It has truly helped me to stay in the moment as much as possible and live a day at a time. Please know I'm here if you need anything. Both my mother and mother in-law had dementia.
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Thanks jaycee. So glad to hear you are doing well on it. I hope she will too. From all I'm reading from you, the other thread, if it works, it will be for a long, long time.
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ctmbsikia, does your city/state have a tenant landlord office? If so, they may be able to help you or at least give advice. Definitely something to look into. Agh, nothing worse then men treating women like we don’t know anything!
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Hey kath. My township does not have any sort of inspection laws. PA sucks with it's laws as well. I don't want to move for at least another year or two. The lease is month to month so he holds all the cards. If I reported him, he is the type that would just keep increasing the rent every 60 days until I could no longer afford to pay and would have to move, or he can simply decide to terminate the lease. Trying to stay cool headed. I'm still a little shaky over this, but the flow of tears has slowed. Just waiting for next heavy rain to see what happens.
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I take both Aricept and Memantine now. I have PPA which affects my speech as well. At least it is logophenic PPA and I do not have behavior issues with mine like some people get. Now take melatonin as well because since it all affects my sleep and if I do not I am up all night wandering the hall in the house. Not good for mental state either. ll we can do is hang in there and pray life will get back to normal again at some point.
ctmbiskia it sounds like rains affect that smell. That should be a clue to someone who is checking that out for you.
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Showers later today. Heavy rain on Thursday. Will see what happens.
I feel like a crazy person. Went to my daughters Friday night, met her boyfriends parents. We hit it off well. Spent the night. Called my sister on the way home as I would be passing by but she had just left. Good for her-living life. I bought some food today, cleaned out a drawer in my dresser, cleaned the floors. Now what? While I have 2 good kids, wonderful sibs, and friends that will be dropping in this afternoon, I want to go jump off a bridge. The loneliness is kicking in. I am stressed with being alone. To the point I psychically hurt. Headaches, back ache, left leg. Don’t feel like working out. That helps -just not all the time. I’m sick that when I feel so bad the thought of cancer comes to mind for a few minutes. I hate all of it!!!!
Going to call my son see if he and his girlfriend want to come for dinner. I will cook this afternoon. If they can’t come I can drop stuff off to them later, or even tomorrow. Anyway, had to vent. Seems I’m in another stage of grief as the tears are comingoften. Today is one of those days.
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Sorry you are having a hard day today.
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ctm, I so appreciate your honesty in what you are feeling now.
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ctmbsikia
I have an endless supply of hugs for you. And sometimes tears work as a pressure release, so please don't feel you need to hold anything in.
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Thank you ladies. I do feel like a pressure relief valve going off without warning! Woke up that way again this morning, and since it is wet and damp outside, the sewer odor has returned but not too awful. Hoping it clears up soon as it's starting to dry up some. I did see my son yesterday for awhile. I cooked food for him to take home, and I asked if he could be present when I call the landlord down to finally smell this awful odor which should be back again after the soaking rain we are forecasted to get later this week. I may add my older brother in too if he's around the area. Maybe with 1 or 2 other males with me he will LISTEN and understand there's a problem and that it is HIS problem to fix. To be continued.........UGH!
When I was at my daughters this past weekend she was helping me figure out a budget. The kid has a spreadsheet for everything. Must be a teacher thing. I also don't mind her knowing my business so she's prepared in case something happens to me. Not there on the budget yet but close. I told her may as well add $3K a year in for health care cost. When my employer has the enrollment meeting for next year I should just open an HSA. This morning I sent a message to cancel my next MO appt. in Dec. I'm done with claims for this horrid of a year, my current insurance won't cover Prolia so it's a waste of time. The BS gave me an order for MRI that's due in Jan. So, may as well reschedule MO appt in Jan as well. Knowing I'm going to hit whatever amount it is next year, early in the year, the HSA makes sense, right?
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Don't know what kind of insurance you have ctm but I know my MO had to put in a request and say it was "medically required" before they agreed to cover my Prolia every single time!!! They would have to fight for every single shot. Crazy. I know it is an expensive drug but that is awful when you need it and the cost of broken bones is even worse and would cost them even more! Hate insurance companies.
Don't know about HSA's at all if it would help but think you have to put money into it to use it.
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Hi bc. Did it snow where you are in CO?
I just don't want to chance it, plus who wants to go to an appt. right before Christmas? Believe it or not the office already called back and appt. is rescheduled for the end of January. Now I can put this anxiety and fatigue of being under this protocol out of my mind for the remainder of 2020! Well, I may have to call my GP for a refill of cholesterol med if the pharmacy doesn't text me before I run out. With covid the bottle has said zero for about 4 months now. That should be easy enough though.
Big shout out to edj3, I use the search feature here a lot. I ordered a shefit bra today. Seemed like a no brainer with all the posts I've read about them, yours being one of the most recent. Thanks! If I like it, may get more.
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Aw thanks, I hope you like yours as much as I do mine!
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ctmbsikia...We have an HSA and it has proven very helpful this year. Here is how ours works: my husband set an amount to be taken out of his paycheck pre-tax to be placed into the HSA. He has money taken out of each check and deposited. His company puts a small amount of money in twice a year (truly...a very very small amount). We have an HSA card (it is very much like a debit card) and I use it to pay any medical bills. We have a high deductible insurance plan, so I have him contribute the amount of the deductible over the course of the year. This year, however, we hit our out-of-pocket maximum due to my cancer, so I had him increase the amount he contributes to it next year to help us out a little more. We have still had to pay quite a bit of money outside of the HSA this year, but having the HSA has helped immensely. I hope this helps you a little bit. Oh, each HSA has a maximum amount you can contribute, so you need to make sure you stay within that amount.
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When I was first discussing AI possibilities with my oncologist, she told me Prolia would be covered if it's part of breast cancer treatment (to offset the AI bone loss). If it's just used in general, without cancer treatment, it's not covered. I wound up taking Tamoxifen for a year so I don't have personal experience beyond what she told me.
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Yes we got snow here. Worse further south us and up more in the mountains. We got about 3 or 4 inches and enough to shovel at least. Super cold. At least sun is out today with our altitude even if it makes it 30 it will melt. I think may hit 30 about 1 today. Did not make it there yesterday at all.
Dumb mailman brought neighbors mail to our house yesterday. DH trudged out to get it (at the curb) in the cold. Then had to go carry it over and put in their box. Have no idea who got ours or if we even got any. Kind of scary.
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Only in CO is it 75 and beautiful one minute and 30 and snowing the next.
We had rain yesterday from Zeta go through and I'm sort of happy to report the odor was present but not overwhelming so I decided not to call the LL. It was OK over night, and it's chilly today and things will start drying up by noon.
I got my shefit bra! I love that's it's adjustable. I was worried it was going to be too large, but I sized it correctly. The next size down would be too small. My breasts feel safe in there, top of my back/neck feels good, and straps aren't digging into my shoulders! Yea! I will probably order another.
I got a phone call yesterday from my GP's office. They said Doc just refilled my script and wants to see me. It's been 18 mos, so I made the appt. Guess I'm not done with claims for 2020 after all!
Lastly, we have a wedding tomorrow. Reception is at a home, they rented a huge tent. I think they invited around 50 people. I'm still going to keep my distance, especially from those that I have not been around lately. Since it's Halloween can dress up if you wish. May post some pics. All Souls Mass on Sunday. Every year the parish celebrates Mass for all the members that have passed during the year. I'll be at Church 2 days in a row! I haven't been except for Christmas and Easter. I may consider going back regularly and see if it brings some healing and peace to my life.
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Yeah on the bra!! So glad to hear it works for you!
And yes, I have found a lot of comfort at my church--not Catholic but Episcopal so pretty much second cousins
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We are fortunate that way at least with our snow since it often does not last too long where we are since are on eastern side of Pikes Peak where we live. It kind of dumps up there a lot a lot or hits on the plains out east. May even get a walk in today since it looks like melts and dried up enough and do not have to worry about falling down and breaking a bone with my weak bones from my AIs.
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I think I need to stay off the early stage sections for a bit because I'm getting angry. I would do anything to be early stage again. Surgeries? Bigger surgeries? Scars? Flat? Longer treatment? Barfing 24/7 for weeks? Losing hair permanently? YES to all of that if that's what it would take to be early stage again and not progress. It's like everyone fixates on what are cosmetic and ultimately minor things & inconveniences - yes, they're minor. I'm doubling down on that. Everything pales in comparison when it comes to death.
I'm thin on sympathy today
Gonna go eat a donut 0 -
Moth - I hear you. Oh lady, do I HEAR you. I still feel a twinge of guilt for going off on that woman who wandered into the Stage IV only forum posting without finalised diagnostics, convinced she had mets already. Or the people CONVINCED they have mets and all this pain and then are like Stage 1 Grade 1 and they just have a lumpectomy and couple rads, tops. I've noticed that its the ones who aren't flailing about who seem to end up with the worst hand of all. But it gets tiring to read the angst and then you see Beesie posting those charts about how you are practically cured for life with early stage at this point and it really drives home the "otherness" of Stage IV. Also - statistics suck. They really do and damnit, just once I want to be lucky in my life.
One last thing to steam about - I had my mid year review last week and my line manager passed on that apparently one of the directors thought there had been a negative change in me over the last two years, though she wasn't sure what it was. This woman is one of the three people who knows I have cancer (but not the stage). WHAT THE HELL DO YOU THINK IT COULD HAVE BEEN!?
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I hear ya too. I don’t know how Beesie does it. I read some of those posts, and think, get over yourself. I can’t post to them. Yes, it’s scary to hear your name and cancer in the same sentence. It’s not the end of you tomorrow. I just shake my head. They have no idea how we feel, live, look.
Maybe we should be more vocal.
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I totally understand how you feel but also understand how you can feel guilty because if you really stop and think about when you were very first diagnosed, no matter what stage you are, how scared you are. It only with time that people do realize if they are early stage it is easier for them overall. At some point they stop active treatment and then go to follow up care and worry the rest of their lives and deal with side effects of those treatments. They just are scared. And making decisions is hard when you have never had to make medical decisions before cancer. Doctors told you take this and you got better and went on your way. Not so with cancer. It is cancer.....and now you do this or this or this or this and then they are confused too. I do think with COVID it is even way worse right now. I know my MO was on the local news during PUKETOBER and saying how people are putting off getting mamos and being checked for stuff and she just had a new patient who was Stage IV right off as a result. She had put off going to see any for any treatment at all because of being scared of going to doctor after her diagnosis even and would not even see her MO!!!
So it is not just early stage people being insensitive but also even people afraid to get treated right now!
Cancer just stinks all around if you ask me. Takes too many people.
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Responding to moth, Sondra, Spookiesmom: I have been wondering whether we want to start an anger/ranting thread in the stage iv only forum. This anger thread has wandered off topic quite a bit lately anyway (not without good reasons, but maybe we need a new start for place to yell). What do you think?
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I share some of the feelings that have recently been expressed (and yes, beesie has the patience of a saint). I will add that when those feelings creep in I have to remember what a wise person once told me; The worst you know is the worst you know.” I am not sure that we can ever convince someone in the grip of dx anxiety that things could be far worse. That is simply an experience they have never had and I hope they never do! But, yes it is difficult to read some of those posts where folks who have not been dx’ed or are early in the process focus on things that may or may not happen (especially after they’ve consulted several medical professionals).
Heck, it hasn’t happened in a long time but I used to get flack for doing so well at stage IV. I can’t make my condition worse nor can I pretend that folks like me don’t exist. I was once told that I shouldn’t post about the relative normalcy of my life lest “people” think that stage IV is a piece of cake based on my reality. I know full well that it’s not reality for most, but it is my reality and not typical, but just a different face of stage IV.
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Good points, exbrnxgrl. I have lived both experiences, the terror of stage i and the devastation of stage iv. And I have comforted and counseled many early stage bc patients both in person and online in the forums and by PM, knowing their feelings are normal and valid, setting aside my own issues for the moment. I think members should be able to share whatever is real for them, without comparing. It is also true that sometimes stage iv people can feel inhibited or frustrated or just unable to take on someone's (early stage) feelings about their situation while trying to cope with stage iv. Which are some reasons we have a stage iv forum. So I was wondering if it might work best for everyone if we stage iv people had a choice of threads when we need to rant, if that would help everyone of all stages can feel free to say what has them upset.
It does seem like another category altogether when it comes to folks whose anxiety is extreme, who almost seem to want the worst diagnosis, who brush off reasonable advice, etc. I think they might need to talk to a trained counselor as there is more to address there than possible cancer. There is actually a recent thread where a very worried person allowed herself to be talked down by members, who was able to learn, and take a deep breath. It actually surprised me.
Just saw Colorado's post. Agree, it stinks all around and is scary in any way, shape or form.
Moth, I do understand thin on sympathy days. It's kind of like burnout. Can I have a donut?
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