STEAM ROOM FOR ANGER
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Hi Everyone- I need to rant and I'm pretty sure you will all understand. I finally am getting used to my Ibrance and Femara and Xgeva being a part of my life. I'm getting used to all the blood draws and all the up and down emotions. Yesterday, I do my blood draw, the results come back similar to the last few months. I'm feeling good about it. I get up and get moving today trying to be my old self. Then the MO's office calls. My potassium is high (has been for months - everyone was aware of that.) I have to go get it retested tomorrow. It is in the range my MO was comfortable with since I had an issue within it late last year. No one can find any reason why it runs high. I don't eat any of the foods that contain potassium. I am even careful with the few processed foods I choose to eat. UGH! Now I get to go get stuck again. Sure hope it won't take another 4 tries! Will it ever end?
Thanks for listening.
Suz
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Because I stayed home many years to raise my boys, (I worked before and after) I didn't pay much into SS, my disability payment is a whopping $839 a month. Who the hell can live on that?! Doesn't even cover the "low income" apt I have for $970 a month. I had to get Food stamps, $155 a month. And that is for food only, you can't use it to buy tp, toiletries, vitamins, paper goods, etc, nothing but food. My piece if shit ex, who I was with from 15-40, swore up and down that he would take care of me the rest of his life. Well his GF, that he cheated on me with, must not have liked that, because soon after he stopped paying my alimony. He said he couldn't afford it. He since then married her, and had a kid (the same age as our eldest grandchild), and she stopped working. They eat out always, take constant trips and cruises, spends hundreds on presents for everyone, trying to buy their love. And watched me lose my beloved house, sell my belongings, and fight cancer, without a word. I stood behind him for 25 years, and helped build him up into a success. And my short lived life of luxury became hers. Never in a million years did I think I would end up on Disability, food stamps, and Medicaid. And now Trump wants to cut all those programs. How many ignorant people think all recipients of these programs, are worthless and lazy, trying to get a free ride. I shudder to think of how many are cancer patients, and of how many have perished because of no insurance. I tried as hard as I could to keep working. So many days, crying at my desk in agony. Always so tired from the pain meds. Silently struggling with chemo brain. Hiding it from everyone, and doing my job well. Then work decided to make my life miserable. Everyone said they were doing it to try and make me quit, because my insurance was costing them too much money. They finally broke me, and I went on disability. You all know what a pain getting disability is, a long, tortuous process. And losing my house, and selling most of my belongings, and not know where I was going to live, was so very hard, and stressful, and depressing. I ended up renting a room, in a horrible situation. Man was I on the verge. Then the first luck I've had in forever, my name came up on the waiting list, an apt was available, and it was a low income unit. Just when I got settled into this new apt, and food stamp living life, the Cancer decided to rear it's ugly head again. I never thought about getting mets, that's what I get for not thinking! And I was like most, thought I had done everything I was supposed to, and had very little odds of a recurrence. Think pink and all that crap. I had no idea what all mets entailed. VERY quickly learned it's a nightmare, a life sentence, with no parole. And it is so sad, and sickening, the number of Stage IV patients out there, I can't even fathom the number. How can they not have found a cure after all this time, with so many, many years of research and trying?! You really have to wonder if the big Pharma industry doesn't really have the secret up their sleeves.
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Good luck Stillivin.
Huge hugs to you Dafne and Lita.
I wrote a poem here in this thread, including so many of the same things you are going thru, I so understand... https://community.breastcancer.org/forum/102/topic...
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Mimi, Lita you are in my prayers. Stlliving vent as much as u need. We are here.
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Mimi, I'm not trying to be a C.U.Next.Tuesday here, but I think former husband needs to honor his original promise to you..
Have you tried forwarding some of your bills to him? An itemized list of monthly expenses you need help with? To heck with his new wifey!
Was there any other provision in the divorce settlement? Would a pro bono family attorney help?
If that doesn't get his attention, try forwarding some links to urn sites, caskets and funeral home sites to him. This is no bloody joke. Write a simple sentence, "IF YOU WON'T HONOR YOUR PROMISE TO HELP TAKE CARE OF ME WHILE I TRY TO LIVE WITH THIS DISEASE, CAN YOU AT LEAST TAKE CARE OF MY BURIAL/FUNERAL EXPENSES?" Indicate which urn or casket you'd like, where you'd like to be buried, etc.
If he won't even help with that, instruct your adult child to save some of your ashes so he/she can go over to his house and literally THROW THEM in his face, and maybe throw some in new wifey's smug face, too.
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"
5 hours ago BosumBlues wrote:Mimi, other than the mets, your story is mine.
"So sorry BosomBlues.
Thanks Dafne.
Lita, you're not saying anything that I haven't heard before. There is a whole lot more to all of it, too much to type, but there really isn't anything I can do.
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My ex slugband has felt the karma and it does happen. He still lives in his mommys basement, has no worth as far as assets, because he blew everything, while I maintained a stable home for the kids, and he has had one relationship with a little girl who was almost 20 years younger (his own daughter is 21 and this little girl was 26, he is 48) it lasted like three months and then alone again. I may have cancer but I have had a happy life, my DH is my dream and my world. I wouldn't ever change things, even if it meant not having cancer, if I couldn't love my DH that I am married to now. That is how sure I am of this man I have in my life now. Going on 15 years now and the x slugband still lives in his mommys basement and is growing old alone. It may take time. But the circle Does come around. I have however also worried if I had done something,and this cancer is my payment back. So. All in all , Life can really suck ass. The good thing about that is we can buy chapstick. And on we go..... ~M~
I pray for us all.
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sas-schatzi, thank you so much for starting this thread. I just returned from vacation with an unwelcome souvenir - lymphedema - & I really need to vent.
Do our doctors realize how many of us develop LE? Do they understand what a profound effect it can have on our lives? No one mentioned LE before my treatment. If I had not found a pamphlet in literature provided by the hospital, I would have been unaware of its connection to breast cancer. When I asked about it, none of my doctors felt that I was at risk for it (I had only 3 nodes removed). Even so, I followed every recommendation for avoiding LE. Despite that, I now have an arm that will never let me forget that I had BC. I wish I had been better prepared for the likelihood of developing LE. Maybe I would not feel so blindsided. Or maybe I would have made other choices in treatment. I'll never know.
I feel like my life has been hijacked; everything I do is driven by the bitch that is BC. Instead of spending time with friends & family, I see a BS, an RO, an MO & an LEPT. Instead of enjoying retirement with my DH, I hold my breath waiting for results of Oncotyping & genetic testing. Instead of traveling, I do physical therapy, lift weights & exercise regularly with the hope that I can avoid the osteoporosis & osteopenia commonly caused by AIs. And (maybe the hardest thing of all) the people I love & need most just don't seem to understand why I am more upset than I am grateful!
Surgery & radiation went well & were in my rearview mirror. I started taking Anastrozole in May & had gotten through some pretty brutal short-term SEs. I'm coming to terms with the long-term SEs & was starting to feel more like my pre-cancer self. Finally, the emotional roller coaster seemed to be settling down & now this! I just want a day in which I don't have a single thought involving BC. I just want BC & her annoying minions (cording, seroma & lymphedema) to give me back my life!
Rant over. With all that toxic anger/sadness (a now too familiar emotional combination) out of my system, I will go to the Lumpectomy Lounge & calmly seek information about how to deal with LE.
One last thing ... I know that my situation is minor compared to what many of you face every day. My complaints pale in comparison to many above (Freya, my heart breaks for your family & I hope you find a resolution that brings you all some peace. In the meantime, you're in my prayers). I hope I find the grace so many of you already possess. In the meantime - JKL (just keep living)
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Cancer is NEVER minor no matter what the prognosis. Some people may get lucky, yeah, and find it way way early to where they can get rid of it. But in my research, and after everything that had been thrown at my cancer, because I am so young, the shit spreads, the shit just spreads. The shit learns to hide and it stays there until the perfect storm unleashes another round of hell on you. I myself went from stage two to stage four in two weeks. So.... shit can happen. The day I was diagnosed, I had ran 6 miles in under an hour. I was in by far the best shape of my life. And WHAM!! Not anymore. Now you're going to look like you aged ten years in one year, your skin is going to start to age also, you're going to be thrust into menopause , your hair ? Oh kiss the stuff goodbye, we will be taking that left breast, never to be heard from again, you're going to have neuropathy,badly, you're also going to get lymphedema, because you had every freaking node out of your left arm that there is. Your flat toned stomach will be left in tatters with a resemblance to a roadmap of Texas, and you'll have this third eye thingy installed in the middle of your chest, we call that a medicine port, you'll be needing that for the rest of your life. But we are going to get aggressive with this because you're so strong. Oh never mind that train called chemotherapy coming down the track, just Buckle up because you can't get out of the way. Once that's done... oh dear 9 rounds of more chemo, there go my fingernails, the only thing that made me feel feminine anymore, sure why not take those too! WOuld you lookie here, those buggers ended up in your bones, only a few spots, but you'll forever, yes FOREVER be in treatment. Sign here....... see you in a month to see how you tolerate!! NEXT..... it is a bitch. I agree it's not breast cancer. It's bitchcancer. Or beast cancer. Or bonecrushing soul beating life stealing lovebreaking emotional stripping mind numbing body disfiguring beauty ripper cancer. It's that simple!! Praying for everyone as I always do and always will. ~M~
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I hate to be a bitch, but is anybody else getting sick of the St Jude Children's Cancer Hospital commercials besides me?
They seriously need to do a commercial about us Stage IV gals who can't work anymore, only get a fraction of what they used to net from SSDI, can't afford their expensive chemo, can barely pay their rent, AND SEND US SOME MONEY TOO!!!
Nah...we're not gonna send you any money. You're already on death row. But you can have a pink ribbon instead.
😝
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I do see in recent weeks a ton of commercials for Ibrance for mets. Of course the person dx'd is smiling and all. Yeah, that's reality. Who wouldn't be smiling on any med that makes you miserable and has a ton of terrible se's. stupid
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Bosumblues~ I am sorry if I tend to ramble 😞, all of this is so frustrating, I know you're having a terrible time of breaking down your mothers house and have your own set of sadness and reconciliation of emotions to do of your own. I am not only angry, I promise lol I do love with all of my heart my DH and you're 100 %correct some people don't find that person. That's why I started my own happy thread lol my husband my love my life my cancer, because there I am asking people to share their love stories with me because I'm a hopeless romantic and adore hearing about how strangers or not strangers even fell in love. Some have posted beautiful flash back pics of their lives with hubby and family. I started it to see that there is a lot of wonderful good relationships to be thankful for. That is where I read people's smiles when they talk about their person. It warms my heart. Thank you for your kind words. You ladies are strong and wonderful to share such emotions as well all do. I send you all huge hugs and many wonderful blessings as we fight and go on through this disease. ~M~
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Bosumblues~I am on that medicine and trust me, I am in No way Julie, don't get me wrong some people may be Julie, but usually not after the awful chemotherapy that they barrel at you, I cannot work, I am physically beaten down, everyday with such fatigue that word doesn't even suit it. Everyday I live with worry, how long do I really have? What is that new pain? I used to jog all the time, fatigue has put an end to that, I can barely get out of bed. No glamorous career here. I lost my hair so I don't look like Julie either, and when my alarm goes off in the morning. I am not ready to hit the ground with a stretch and a smile, and they say perhaps it will work for two years or more and that is ok???? Just two years we can help you ?? Really ? That's worthy of a commercial? I don't like pink at all, it annoys me and I hate the entire commercialization of the mere fact they shove all that shit down your throat! Meanwhile, it is swimming throughout our bodies venturing to a new island for residence. While when I do wake up in the morning. I am faced with another day of exhaustion, mouth pain (like my tongue has been hard boiled) bone stiffness and joint pain that just hops around my body like the worst flu you've ever had except this time, This flu won't be going away. EVER. And the medicine you take for it. Just slowly kills us. Harsh reality being handed the black ribbon. I don't have any parade around me, there are no walks for the black ribbon survivors , no special rallies for metastatic women who suffer daily waiting for the grim reaper to appear behind us knowing when we will go. Each day is called a life I know, but it doesn't necessarily mean one is actually living it. You can say love each day. Hell I have even said it. I guess we say what gets u through But for me each day, means I am just another day closer to more scanning and facing endless scanxiety sickness and endless port accesses. Endless.....shots and 14 pills daily.....endless.....until it isn't anymore. ~M~
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Olivia Newton John is very much alive. She now has MBC, but she is not dead
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Well I missed a day here, and I missed a lot! HUGS to you all.
I HATE all those commercials! All the people are always good looking, even the kids. And they always have a wonderful spouse and family for support, who go through everything with them. So unrealistic. They just make me feel worse, fatter, uglier, and more alone. I have started muting the tv when they come on.
As for Olivia, of course I feel for her, recurrence sucks! But yes, she has definitely done us all an injustice. We know there is no cure, surely her doctors have informed her. So why doesn't she speak up, with the truth! Why does every celebrity that gets BC, seem to have an easy time of it, and breezes thru it?! There has to be one that has had some trials and tribulations with the disease. I also suffer from PMPS, which NO ONE tells you about. It has been in the closet for so long, that many doctors aren't even aware of it! Surgeons don't want to admit to it. Yet they have been doing studies and research on it, all over the world for a long time. Many women have been told it's all in their head! Thank god I found my PMPS FB group, it has saved so many women. We constantly talk about how we need a celebrity, that has it, to come forward and talk about, and make the world aware of it. Someone to tell the whole truth, about BC and all it can entail! I knew nothing about Lymphadema either, before finding that group. Fortunately I don't have it, but damn, that is something they need to tell every BC patient about too! These aren't little side effects were talking about, they are life changing, never-ending, permanent issues!
And yes, Alzheimer's is nothing to smile about. Both my dad, and stepdad suffered from it, it is a horrible way to go. I think it is worse on the family, than even the patient.
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My rant: In my case, My husband's MIL moved in with us when the doctor told her she couldn't be alone after her colon St 4 Non-hodgkins lymphoma surgery and during treatment. She didn't like it since her own house was closer to her hospital, but none of her children, including my husband could move in with her for her "year' of care and treatment. My husband (who works at a smaller big box store) quickly notified his boss that he would need to always have Thursday's off to take care of all her appointments and treatments. How wonderful of him and the nurses to arrange everything around that day of the week. Every week, there was something to do and he took her there with no complaints, at first. At one point, she even switched some of her doctors to our local hospital after she was rushed to the hospital with bleeding. That hospital is literally a rock thrower's stone's throw from our house. Both of us visited her every day that she was there. Same thing when they transferred her across the street to rehab. Side note, none of Mom's kids aside from us help out.
Just before she moved back in with us, my angel of a husband revealed that running Mom around on Thursday's had put a dent in his off time, WHAT? Note: he can be good at holding things inside for a very loooonnnng time. Fast forward to my BC. He works at the same place that he did then, but there is a new boss that is trying to shake things up with hours. Instead of a team working 4 to noon, some weeks, he wants them to work 10:00PM to 6:30AM, again WHAT? That started right when I was diagnosed and my treatment begins end of July 2017. My hubby is telling them today that he needs to have Thursday's off again, for at least a year and will make up for it on Saturday's; the work will still be there. But, apparently, the boss still wants him and his whole team to do this crazy shift that can be done during the day. BTW, customers can't find any help during the day if there's no one there!
When the team was told in a meeting that they were going to be working crazy shift for a week again, they all said NO. There was silence and an angry look on the top manager's face. Someone is going to cave, I have a feeling because every once in a while, they see a group of people in orientation. Most of them don't stick around, I wonder why? How does this effect me? Well, if he works until 6:30 AM, then waits for my appointment(s) to come up, drop me off then run home to sleep, he won't get a decent 7 to 8 hours to sleep before that 10:30 PM shift that night. That work place is nuts.
Way back when it was less difficult to find night owls, I used to shop there because I was a night owl too, back then. I hated shopping when they had the aisles all clogged up with skids of product at midnight. The reason I shopped then is because hardly anyone else was there and I had just gotten off work so it was convenient.
Anyhoo, he knows how chemo goes, but of course, the two treatments are different. What's my rant? I'm afraid that between my shorter hours at my work (if I can even work!) and the possibility of his job loss, you can just imagine what's going through my mind. I just got a peek at my bills for pre chemo and I about fell on the floor. At least $25k and I have yet to get a PET scan and ECHO w/chardio consult, not to mention the PORT. I could just scream.
Yesterday, I broke down crying on the way home from work. I haven't cried since my MIL passed away this year. Didn't cry when I got my diagnosis or before then during all that testing. My boss is such an angel and has bent over backwards to fit me into a new schedule that will work for me. Her eyes kind of bulged when I told her that the treatments, in total, would be for a year. But she calmed down when I told it that the chemo was only for 6 treatments. Bless her, she didn't know about all that yet. Isn't ignorance or inexperience bliss? I'm done ranting and hope that my husband's grinch of a heart grows from a pea size to a normal heart.
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I have been absent for a while. I am staying away from home, at a lodge, while I take daily radiation treatments. Was told that mid way through I could expect some redness. By treatment 3 my breast was red, swollen, and hurting. I have had 8 treatments now and my chest wall feels like someone smashed me with a baseball bat. And even though the rad onc tells me the nukes are missing my lymphatic drainage system, my left arm feel swelled and itchy and weird. I have read enough to know that this is likely going to end with lymphedema. Flock.
The rant today is husband. God I seem like a flake how one day I love him and next day see nothing but divorce in our future. But he said, in a text, "I feel that you do not have cancer anymore and that you are not dealing with this in the best way. Your attitude about cancer will kill you long before the cancer does. Haven't other people have told you that your attitude is a problem?" Uh .... what does that even mean?
I don't have cancer? Then why, in the name of god, am I subjecting myself to radiation? Why, if I don't have cancer would I take five years of tamoxifen ... for cancer cells I do not have? If I do not have cancer, why will I have mammos in 6 months? For someone who does not have cancer I sure seem to be getting processed as if I do!
i WISH I could get cancer out of my mind. It's like being hit by a truck and with your limbs all broken and twisted being expected to get up and walk like you did before the truck hit you. My husband, and other people, want to put this behind me. God, I get that! But I don't think it's for me that they want it, but for them. It's okay if I am terrified and have it on my mind like a lurking vulture, waiting to swoop in and peck my eyes out, just as long as I keep it to myself and never mention it. They want their life back and that means I cannot have cancer, do not have cancer, will never get it again, end of story.
I feel like a burden and a problem when I am told that my fears are unfounded. I think several people around me are in a heavy state of denial. But it's damaging. I am pissed off as hell but too tired and too sore to even express it clearly.
I am so heartbroken by what I've read here. Some of you are suffering serious misery. Words escape me. I pray. I don't even know for what sometimes. For whatever it is that each of you needs.
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Runor, I blame the whole pink shit propaganda for people believing that "attitude" will make any damned difference to how your cancer progresses or not. You were only dxd a few months ago, you are still undergoing active treatment, what the hell does he expect?
Once you finish treatment and as time passes cancer will not be the main focus of your thoughts. It is a grieving process, it takes time.
((hugs))
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I loathe Oct pink awareness shit. Everyone is aware by now I think. Why not focus not only on the research in better txs but asking people to help individuals. Donating to the cause is nice but some people are alone and have no help. They need help with meals, cleaning, laundry, kids if any. That part gets lost as it doesn't occur to people because all they hear is donate now!
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I'm with you Artista. I was getting monthly requests for donations for BC awareness, tick the box to say how much you are giving type of thing. The lowest amount was $50. I sent one back letting them know that I was stage IV and that it was costing me a fortune every month for meds, and I did not have any spare money for awareness.
The next letter I got was how to leave them a bequest in my will.
Mind you, my bank is just as bad, they called asking if I wanted to buy life insurance. Told them they wouldn't cover me because of my circumstances. 10 minutes later, another call from the bank offering estate planning, at a cost of course.
Sometimes it just feels like vultures are circling.
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runor~please tell your husband that if he really believes that you all of a sudden do not have cancer . (Or that he would even bring those words to his lips is ridiculous, not to mention that the one thing in this world you want to hear is that you no longer have cancer) tell him I have some property for sale just for him that backs up to DEENIAAL river!!! I want to kick him in the shin for you. (I don't want to really hurt him, because I know you do love him) grrrrr family makes me so mad. I am so sorry for you! ~M~
Sweetp~ as far as your hubbys job. I am praying that all the hour business will work out. I know how stressful that can be. Especially when you no longer have the strength to do everything you used to do. Sometimes I. Don't think employers are employee friendly. 😕 Idiots. Prayers for you and your family. Also for all of us BC sisters (and in some rare cases brothers) ~M~
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runor. Getting cancer out of your mind? It took me over 3 years before finally the first thought when waking up was not "cancer". They can't realize, because they don't live with the scars, the pain, the fear,
I remember that right before the first surgery, the big one, BMX + LD recon, while I was waiting in the pre-op, I was bawling uncontrollably. My (ex now) boyfriend was trying to reassure me that everything will be ok, the surgeons are great, I'll go through treatment, all the yadda yadda, and was siderated because I normally don't cry, ever. I couldn't explain to him that I was crying because I knew that life, as I knew it, was over, and I was entering a journey to Hell from which I knew there was no turning back.
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Thanks Micmel. Yes, Prayers and hugs all around!
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WTF is wrong with your husbands?! UGH, men! Hoping you guys can get thru to them. Runor, glad you checked in, and that you're able to stay at a lodge nearby your radiation treatments. I cannot believe your husband said that! So sorry you're having such a hard time with the rads, sounds awful.That's one thing I haven't had yet, radiation. I remember when I was first diagnosed, I always feared chemo the most, thinking radiation was much easier. Then I heard from so many, of the reality of it, and horrors it can cause. Another issue that is white washed in the public.
My rant tonight: I ordered a newer version iPad from the online Apple Store. Mine is old, and past its ability to be updated. It crashes all the time, won't load so many pages and articles, and now there is a loooong lag even when typing. I have to type in notes and copy and paste it everywhere else. I live on this thing, since I can't do much else. So I finally splurged to get a newer one. I bought a refurbished one, which I have done before. If you get it from Apple, it is like brand new, new glass, cover, everything, and has the same warranty as a new one. I never had a problem. Well the new one came, and I tried to set it up. Only it wouldn't load all the wifi networks to join, it would only show half the list, and of course my network was in the half not showing. And it wouldn't let me scroll to find mine. After fighting with it for 1/2 an hour, I finally decided to call them. The first guy was very nice, but after spending 30 min with him, off and on hold, trying everything he could think of, it still wouldn't work. So he gets someone else to help me, his super or something, and this guy was horrendous. They didn't know if it was a hardware or software problem, and the only way to tell was if I had a computer, with iTunes installed, so they could have me run more things to try. I told him I had an old computer, but it wasn't set up. He argued with me for 30 min, and wouldn't help me. He kept telling me to get my computer set up, and then call back. I told him repeatedly that wasn't going to happen. Then he told me to find someone who has a computer that I could borrow to try this. Um no. Then he wanted me to go find the nearest Apple Store. I told him I couldn't, because I was home bound doing chemo, for cancer. He didn't care. He just kept telling me the only way he could help, was for me to do one of those three things. He just repeated himself over and over, or sat there in silence. A few times I had to ask if he was still there. No matter what I asked, he shot me down. I told him I bought a product from them, it doesn't work, it is up to you to fix or replace it, it's not up to me! He just kept saying we can't until we know of its a software or hardware problem. I said I don't care what kind of problem it is, it doesn't work! He just kept arguing and saying the same things over and over again. No matter what I asked, he would never answer my questions. Finally I said that's it, tell me how to return it and I will go buy one elsewhere. He said he can't do that. WTF?! I'm like, yeah you can. I bought an iPad, it doesn't work, I want to return it. It has a warranty. He still wouldn't do anything. My head was spinning, I was so upset, frustrated and pissed. I finally asked again to speak to a manager or supervisor. He said there weren't any. I kept asking and he kept saying no, he was the only one. He kept telling me if I want to talk to anyone different, then I need to hang up and call back. Again, WTF?! I flipped out and started yelling, you can't tell me there are no managers or supervisors in the hole f*cking Apple Corporation! I want to speak to one now! He hemmed and hawed and wouldn't answer me, more silence, then I was put on hold again. I just started bawling, I was so upset and mad, all I wanted was my iPad. Why does everything have to be so damn hard for me? Then a woman comes on the line, along with him, and says she's is going to take over. It's been an hour now, and I said so I'm going to have to start this all over again?! She could tell I was upset, and said don't worry, I'm going to take care of you. When I told her everything this guy said, she was horrified, she just couldn't believe everything, She said in all her time, she has never heard such bad stuff. She notated the time, and all that, and said the call was recorded, so hopefully he gets his ass straightened out. I spent another 30 min with her. She sent me a return label, is sending a new iPad, and threw in a $40 cover. She felt so bad, she was in disbelief of what this guy did and said, as I was. She apologized a million times, and said that is not how Apple operates, I said I know! 1-1/2 hours, one heart attack and one ulcer later, I'm getting what I should have gotten the first try. UGH
Then, thinking the night couldn't get any worse... There are two elevators in my apartment bldg, it's a senior building, so very necessary. Well, 2 1/2 weeks ago, someone knocked off the fire sprinkle, flooding the area and taking one of the elevators out of commission. This has caused me to walk A LOT, which I trying not to do because of the hand and foot syndrome from the damn chemo. To go Anywhere. I have to walk around the whole building to the other side, to take the other elevator, then walk back around the building to the side where my car and apt is. Then do it all over again when I come home. And have to do all that anytime I go anywhere in the complex, for laundry, trash, mail, etc. My feet are getting so bad, and they haven't even been working on the elevator since the first few days! Someone told me they're waiting on Ins. GRRR Then tonight, after I calmed down from the Apple fiasco, I decided to take a walk. I needed to get mail, including meds from my mailbox, and take out trash, and drop a letter off at the office. So I loaded up my walker, to do one trip for all these things, trying to walk as little as possible. I walk around to the other side of the building, and take the elevator down, I got to the first floor, and the doors don't open. I start to freak, then hit the door open button a few times, and thankfully it opened. I was so afraid of getting stuck in there, it's like over 100 degrees in that elevator. So I do all my tasks, and walk back to the elevator, and there's two women standing there. The doors are still open from when I got out. We pressed all the buttons, and now this elevator won't work. So there we are, on the first floor. Where none of us live, two of us with walkers. Are you friggin kidding me?! How the hell are we supposed to carry our walkers up a flight of stairs? I also had a ton of mail, and a huge package of mail order meds to carry. So I walk back around the building, down the parking lot to my car, and put my walker it. Then walk back around to find the nearest stairwell, climb the stairwell, then back down the long hallway to my apart. By this time I am beat, it's in the 90's with monsoonal humidity, which we are not used to, I'm drenched in sweat, my back hurts so much I'm hunched over, walking SO slowly, and my feet are burning and stinging horribly. Again, so upset and frustrated! And I really needed my walker upstairs, as I'm going to stay at my sons for a few days tomorrow. So I have nothing to carry all my belonging, to take with me, and no elevators! I don't know how I'm supposed to get everything, including myself, to my car in the morning! I have such a headache, I wonder why?!
NOT MY DAY!
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Lita...so sorry you are dealing with stage 4 BC. However, I'm not sure what that has to do with commercials about St. Jude! One has nothing to do with the other. Nobody should have to deal with cancer and its affects on their lives but its one thing to deal with it as an adult and quite another as a child! Absolutely nothing is more unfair! As for Pinktober and the lack of awareness and concern for stage 4 BC, I agree. St. Jude is a wonderful hospital that renders free care and a multitude support for patients and their families. I for one will never get tired of the commercials. Good luck to all navigating this complicated disease.
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dtad, this thread is for venting. You don't have to agree with what has upset someone, they have the right to their feelings and to express them.
I personally think it is the height of hypocrisy to post on another thread "Yes, be nice!", and then come to this one and not only pass judgement on Lita for her feelings, but throw in a guilt trip about children dying of cancer as well. My stepson died of brain cancer as a child. Lita dying of cancer is going to be no less devasting to her family as his death was to ours.
Surely we do not need to have a hierarchy of who's life is worth more added to our problems.
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I've been debating posting this, but here goes.
First, I have been married to a wonderful man for 26 years. I would consider us soul mates (even, fwiw, we have the same birthday, although he is 7 years older).
But, previous to meeting my beloved DH, I dated a man I was crazy about. His wife had been kidnapped, raped and murdered about 8 years prior to our meeting each other. Anyway, although he wanted a woman in his life, he absolutely could not let go of his tragically deceased wife. Her pictures were all over his house and he referenced how awesome she was frequently. Well, at some point, I wanted more than just dating, and that was it. When I stated where I was coming from, he ended the relationship.
Fortunately, my knight in shining armour was just around the corner. The rest is history.
Just trying to say that for some people a truly loving marriage can't be replaced. In a way, they feel it is sacrilege to even try. As in my case, they may have relationships, but the ultimate commitment is not possible in their minds.
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pup mom~I agree with you completely. That is how I feel with my DH. Being so ill at such a young age scares the hell out of you. I just am happy I found my DH and would never be able to love anyone else because my. Life long love for this man, is what I committed too. It's what I only want. I think although sad for that terribly tragedy, I guess for him, there just wasn't getting over something like that. I am happy you met your knight! We all must find that knight in life. It makes it so much more worth living. Hugs ~M~
As far as the commercial commentary. I don't like the big pharmacy companies., those commercials aren't realistic by any means of what having the illness they depict in that commercial is usually not fully accurate,(there could be flukes) the st Jude's commercials I can handle, and I don't want those babies or children to suffer either. I do believe though, that they are played way too much. If I am honest as a fellow stage four patient (as Lita is) I can understand that feelings of being on the end of the forgotten condition. Is no picnic either. We have financial restrictions, and have adult problems that don't allow others to take care of us, because we are in a complete state of knowing that no matter what care we receive it only prolongs what will inevitably happen to us. We don't see any commercials in support of metastatic breast cancer or even the acknowledgment, that tons of women live with this everyday. Just as those poor innocent children do. Just in different ways. So in my mind, if you had these small, adorable innocent children in a commercial you would be a lot more willing to shell out some cash for that, then for older bald, boobless in some cases, pale, Bent over, some unable to walk with out a walker because of agony from bone mets. I just think it's the selling of the children that bothers me. Whereas. Us metastatic cancer patients have no parade in pink ribbons, no fund to supply us with thousands of monthly dollars in medical bills and tests and shots. And etc... on that one. We are adults that have been handed the black ribbon with no hoooplah of ringing any chemo bell at the end.... so if us stage 4 ladies are angry and feeling a littleLeft out.. you'll have to please excuse us. Our lives are literally flashing before our eyes. I love children more than anything and st Jude's is good. It's just merely pointing out that we have been forgotten in the awareness arena ~M~
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Lita & Micmel (& all of you who are stage IV), I am so sorry for what you are going through. My younger brother has lived with stage IV kidney cancer with bone & lung mets for 11 years. He has been through numerous rounds of chemo & clinical trials, had a kidney removed, had a metal rod placed in his leg & can no longer work. He (like all of you) continues to inspire me every day. When I was diagnosed, I asked him for advice & I've used his words as my screen name - JKL (Just Keep Living). It's all any of us can do.
Now I will take Sass' advice & find another thread for awhile (something that makes me laugh or smile!). I'll stop by periodically to check on all of you (& to rant when the need arises!). Wishing all of you peace & strength - JKL
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All I have to say is, "STAGE IV LIVES MATTER!"
It shouldn't matter if you're age 5 or age 55.
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