STEAM ROOM FOR ANGER
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All right, I'm about to post a diatribe, so buckle up. I had my phase 1 DIEP last week and we returned last night to Atlanta. It was a rough surgery, but that's not what this is about. When we got off the plane I had a message on my phone from my sister: "its ovarian cancer."
I can't even think of something bad enough to say. Fuck doesn't even begin to cover it. I'll say it anyway. Fuck you, cancer! And all your cancery friends!! Is it not bad enough that you've rained down multiple cancers on every generation! You side-swiped sister P with a tiny DCIS and uterine cancer 5 years ago. You hit me head on with an aggressive IDC and took my hair and breasts. My precious mother fought you twice, before succumbing to kidney cancer last year. My dad, who was generally a bad dad and all-around not nice person, you smacked him upside the head with mesothelioma. A reward for faithfully working in the Navy shipyards all that time, down the tubes in less than a year.
What about all the grandparents, aunts & uncles & cousins? Cousin G, dead at 42 with non-smokers lung cancer. Aunt A, dead at 76, also of non-smokers lung cancer, after battling breast cancer at age 43. Grandpa T, killed in 28 days by pancreatic cancer. Granny B, survivor of uterine and breast cancer, killed by 2 bouts of colon cancer. Granny Bs parents, who each died of rectal cancer. How about her 6 sisters & brothers, 5 of whom died of lung, breast, or colon cancer? Seriously, did you have to tap my 20 year old nephew with lymphoma, too?? When is it enough?
My dear little sister. 53 years old. It's not bad enough that she had to get type 1 diabetes, which makes her life hard on a daily basis. No, cancer decided to show up 2 years ago in her uterus. This week, cancer decided she needed blast of ovarian cancer right to the gut.
And where were you United Group Death Care? Three years ago, when we found out that I had two gene mutations and Dear Sis begged for genetic testing. You told her it was too expensive. Well, now you're about to find out what expensive really means!
I am heartsick. Dear Sis goes to surgery Sept 14. Why so late? She's at Burning Man. She got the news and decided she'd rather stay there than give over one more thing to cancer. So, she doesn't know exactly what she's dealing with, but when she gets back home she knows that heavy-duty chemo awaits. Her beautiful long red hair will skip town before her 54th birthday in October.
FUCK YOU, CANCER! My sister, my best friend in the whole world. We've shared so much. Physical and sexual trauma. Suicide attempts. Bipolar disorder. Even though we live on opposite coasts, never a day goes by that we don't touch base. And now, when she needs me and I need her, our hands are tied. I'm a week post-op DIEP--i can barely feed myself. Forget flying out to Seattle to help her in her time of need.
fuck you, cancer. you have broken me, body, heart, and soul...
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(((HUGS))) Poodles
I'm so sorry cancer has stalked your family. Cancer sucks.
Since you seem to know most of the family history, I would suggest making a family tree for each side of your family with all the cancers listed. You can check with other family members to see if your list is complete, and give the trees to your family members to take to their PCPs and get genetic counseling and/or testing.
I realize that you're positive for PALB2 & Chek2 genes. PALB2 is associated with breast and pancreatic cancers & Chek2 is associated with breast, colon, and prostrate cancers. Yes, mesothelioma is caused by exposure to asbestos. But all those other cancers? Bad luck? Exposure to chemicals or radiation? So many different cancers, it doesn't make sense. Maybe there are other mutations in your family as well.
I also suggest contacting PROMPT or another gene registry to see if they wish to follow your family. Cancer sucks, but maybe researches can track the cancers and help future generations. www.promptstudy.org They may have suggestions for future screenings for family members to beat cancer now. You might try calling them directly or emailing with a list of cancers. If I were a researcher, I would want to helping your family.
Big (((HUGS))), Madelyn
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KatyK...let others help you. Because of my extensive bone mets, I just can't do that much housework anymore. I do try to cook meals, but I literally have to sit down at a table to prep vegetables, cut up stew meat, roll out crusts and dough, etc., which I NEVER had to do before. Also have to sit on the bed to fold clothes. Used to be able to do that standing up, too, but not any more.
You have to pace yourself. I wanted to Swiffer my bedroom floor today...but I'm just too tired. Making scrambled eggs for b'fast and getting a roast in the oven for dinner was about all I could accomplish today, and I'm okay w/that. I can tackle the floor tomorrow...or maybe not ;o).
L
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Rip john mccain. Stopped aggressive brain cancer tx yesterday and gone today. Regardless of politics, he was a good man.
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back to the sweating talk.
Since treatments last year, like many here, I sweat MORE and in different spots.
Since having lymph nodes removed on right side, I don’t seem to sweat in the right arm pit any longer. Now my body likes to sweat along my hair line. I will sweat from the slightest amount of physical work. HATE it. The summer weather is so much harder on my body than ever before
This morning, was doing light yard work and now my hair is wet. Then found a NEW sweat location.... my shins seem to sweat now. They were both wet to the touch. Yep shins. I remembered reading Lita’s post about chin sweat. My body must have decided chins are shins and now they sweat. UG
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I am still grateful that I took the beatings reasonably well. that was what I thought. chemopause I loved it.. hysterectomy w miniscule issue. Arimidex daily since last November without skipping.
Everything calmed down and settled but out of the blue sky I started to sweat profusely at work. I may have to carry another outfit to work. dang it go away
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Poodles
I couldn't believe your post. I almost couldn't read through it. It's an unbelievable list of horrible cancers - Hard for you to even keep track of it all.
I'm so sorry you've been side swiped again with your sisters diagnosis.
Can't type any more --- arm problems!
You're in my heart.
GPxxx
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Thank you, GP. I didn't even include all of the cancers. What I wrote just borders on the unbelievable, unless you're a member of my family. Going back to my dad's grandparents, every generation has been afflicted. His mom, 5 out of 6 of her sibs, himself, and so far, 3 of his 5 kids, two of whom have had cancer twice. Oh, and 1 grandchild. Mom's family is a little better, but not much. Her father's sister had BC at age 24, back in 1912, when the stigma of cancer was so bad, even doctors would hardly say the word. Her father and 2 of his sibs, her sister, a niece. So many of the same cancers. There HAS to be a genetic correlation.
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Poodles~ I really have no words. I am already exhausted from my battle with cancer, your generations and generations are way enough for your family. I'm so very sorry. I hate cancer more than I can express. There really are no words to express the sorrows and feelings associated with it all. Torture is one that's come to my mind. I'm sorry about your sister. That comment about the long red hair really got me. I lost my chestnut long hair as well from the beast. It gutted me morethan anything. Then my breast was gone too. It's a horrible battle. I will hold you both close in thought.
Roseabella~. John McCain was a real man. A real fighter and class A patriot, he truly didn't leave any man behind. He was going to be let go but he said no way. Five years in torture in Vietnam Nam. Five years! They wouldn't let him raise his arms higher than to reach forward, that's why he was never able to raise his arms above his head anymore. They didn't give him proper medical care and he starved and was drinking basic muddy water or whatever they could find. He never complained about it. He wrote books to teach people to really come together. As American patriots. That is what should come out of his death (From effing cancer none the less) the country needs to finally unite together. Finally become one again and help each other live in this shitty world, and make it through the horrors we face as a human beings together period! Thank you good sir.. for you.. for Meghan....for all you did for this country.. These young ones could learn a thing or two about pride from you.Rest In Peace. The last lion!. John McCain!!
Much love ~M~
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RIP to John McCain, a good man.
Lita57- thank you. Right now I’m still quite capable, it’s my fears of what the future may hold. I do o.k. But those fears of uncertainty get me sometime. I do my best to live in the present.
Had a call from a niece this morning- almost never hear from her or get any support and she lives very close. She wanted emotional support as she lost her job - I get it, that can be rough. Then tells me what a rough week it’s been, o.k. But never asks how I’m doing! My week was pretty rough too with scans, blood work, oncology appointment, and zomata infusion. I mentioned I know what a rough week is like and she still didn’t ask how I was doing! I finally told her that it hurts my feelings when she doesn’t ask about me - she didn’t say much and really didn’t get it. Unreal, the lack of empathy! I’m still capable of caring for others and offering kindness and compassion but when it’s not reciprocal it really gets me. This is the side of family that does not seem capable of empathy. I give up!
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Thank you, Micmel, for your kind words. And for your tribute to John McCain. There is a National POW Museum in Andersonville, GA, home of one of the worst prisoner of war camps during the American Civil War. It covers American prisoners from wars stretching back from the Revolution to current day conflicts. John McCain is featured, along with many unknowns. It is a gripping experience and one well worth going into the middle of nowhere to see.
I salute you, John McCain. You were a true patriot and you certainly didn't deserve brain cancer.
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wold love to see that poodles. Worth the trip I am positive!! He is one man. I honored always. Voted for him. And I agree he didn’t deserve brain cancer. Although, no one that is good deserves it. The thing that gets me is the murderers and rapists, live to see a ripe old age. I and us who have stepped in the pile of shitcancer wonder and worry. Everyday.
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I salute John McCain too, from across the pond. What a loss. The whole world is poorer for his loss.
Wonderful decent and honest man. A rarity iin a politician.....
My husband met him once, many years ago. He was visiting our Government offices and they met - believe it or not, in a local café. He was very cordial and chatted to my husband who is fascinated with American politics.
GP
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Vent:
So - I made the mistake of telling my psychiatrist that the only med that seems to make me feel better is Ativan. I was on 15 (0.5 mg) per month.
Now she thinks I'm addicted to it and wants me to be off it. I don't take it that often. And, if I need to feel better - I f&cking need to feel better. I have a lot of anxiety. Who wouldn't with breast cancer!?!?!
Furthermore - when I was telling her that I didn't like my life. She told me that *she* doesn't like my life - either. Really!?!!? How in the world am I supposed to feel better when I'm cut off from the only med that helps me and my own psychiatrist thinks my life sucks.
I feel pretty alone and misunderstood...
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DancingElizabeth:
Sorry you have been misunderstood. I know that can be frustrsting as it happens to me quite a bit.
Doctors today are afraid of losing their license due to overprescribing narcotics, but if your psychiatrist is worried about it she can have you bring your prescription in to see that you are not misusing them.
As for her comment about her not liking your life, that may have just been an attempt not to invalidate you. There tend to be two types of people; those who want to be assured by having negative sentiments contradicted, and those who want to be validated by having negative sentiments agreed with, and those in the mental health field have to figure out what category each patient falls in and when. She probably wasn't trying to be offensive. It was probably a socially clumsy moment for her.
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DancingElizabeth - I think you need a new psychiatrist. This person works for you and she's not doing a very good job so fire her.
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Yes, fire her. The last thing we need is doctors that hurt us and don’t get it. But there are new guidelines for opiods and benzos that are making the doctors run scared. The truth is out of 79,000 ODs, 49,000 were from heroin and illegal fentanyl.
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DancingElizabeth, of course you feel alone and misunderstood! Her insight into your life isn't very helpful without some suggestions to help you with your issues. I hope you can find someone who will take the time to get to know you and help you move toward a happier life. I know that's tough to do with BC but the right help can get you moving in the right direction. And she needs to chill out re the ativan - perhaps she needs some herself?
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Thanks Everyone...I'm just in a sea of glum today. Feel very sad and lost. I'm trying so hard to hang in there...
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This whole month has been absolutely horrible. I am depressed too. The tooth pain wore me down. Add that with awful people around me. I am getting away and just the thought of it is keeping me sane. DancingEliza.. ditch the doctor. Let us take care of ourselves we have all been through so much.
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Venting...My cortisone shot did absolutely nothing for my rotator cuff tear. Physio put my pain into a 10 so much that I was supposed to start Workyesterday and thankfully they have agreed to push my start date out a few weeks. (My position was restructured last fall and they have called me back so it helps I will be working with some people I know) With all this going on your mind starts to wonder if this just a muscle thing? The only saving grace is that we have a holiday planned so I'm hoping the rest will help me heal.
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DancingElizabeth …I've had one or two experiences like that with doctors. I walked out of the office and promptly filed a written complaint with the medical board in the state where I live, sent signed, return receipt (marked confidential, and closed the letter requesting a response).
Some of these "doctors" should not be in practice. They are way too full of themselves or over-the-hill. In some cases, their holier than thou attitude can harm patients!
I think it's okay to go through times of not liking your life. We all do. Having cancer is no help...so I've recently learned!
I wish you well!
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Hi JJOntario,
I’m a bit of a veteran on cortisone shots. I’ve got Rheumatoid Arthritis and tore up my rotator cuff with it a year ago. It takes about 7 days for the shot to work. I’m often more sore on days 2-3 and wonder if it worked at all. Day 10 is where you get the aha feeling. It heals while the swelling is down, but tears (esp ones “too small” for surgery) take like a year to heal up.
I’ve got some time off work now for treatment and it is finally seeing some improvement.
Good luck
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Thanks Kelly Anne, the soreness from physio has eased a bit but my cortisone shot was a week yesterday. I'm also on edge because I'm super cautious getting a needle poke on that side. Pain is a really horrible thing. I've read that radiation can make these kind of injuries more common and it's frustrating that I never knew that until now. Right now I have a more burning throb and I know I'm eating too much Advil but maybe there is a chance the shot will still work!! (?
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I just need to vent.....
I have been employed with the same company for 25 years. I am not perfect, but I have always had good evaluations, volunteered for extra work (committees) , and not had any problems with my bosses. We just got a new supervisor in my area and she scheduled some time for each employee to talk with her. She is not new to the company, but new to our area. I met with her yesterday. She explained that the previous supervisor might not have adhered to company policy all the time, and she wanted to review company policy concerning attendance, breaks, tardiness, etc. I know she was giving the same information to all of us so we are all on the same page. In our company the policy is after 4 absences you are given a verbal warning, after 5 a written warning, and after 7 you are fired. I have missed 2 days this year so far. In my history there are some years I didn't miss any days, other years 1 or 2. She knows I have cancer. There was some time at the end of the meeting that we just talked--she told me some about herself and I explained my Stage 4 diagnosis to her--my planned CT scans every 3 months, my low white count and the need to prevent illnesses. I asked her about the attendance policy and my issues. She directed me to talk to Human Resources. I plan on doing that. I know there is FMLA--I used it last year for the surgery and chemo. And I can resubmit papers for FMLA again if things get too bad. But just a day here or there ?? Fatigue is always there with the Ibrance, and with fall and winter coming with flu and illnesses around someone with cancer may be affected worse than before.
I know that business is business. And they are there to make money not coddle the staff. But, come on, I have cancer !!! I did not ask for this !!!! I have a good record with the company and would hope for some help with my situation to help me keep my job, not only for the money but also to keep my health insurance. If I would be fired at some point, how would I find another job when I have Stage 4 cancer !!!!!!! No one would want to hire someone with that diagnosis and prognosis. And when I have asked about SSD before, I was told I would need to be out of work for 12 months before being considered then another 6-7 months before receiving any money. 18-19 months without money coming in. And how about insurance.
Just venting. Why do we have to worry about this with everything else !!!!
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Candy, is this a corporation or smaller company?
I have found that the smaller companies will indeed try to work with you because they DON'T want to have pay the recruitment money and take the time to interview and train your replacement. To larger corporations, sadly, you're just another 'body.' They could care less if you've been there for 25 years. There is NO employer to employee loyalty or security. They could dump you (and sometimes do...) in a heartbeat and have your replacement sitting in your cube the next day.
I wish I could paint a brighter picture, but this is often the way it is.
I see you live in Illinois. In Calif, one can apply for Social Security Disability immediately. I went back and checked my records and I got my SDI about a month after I applied for it. I wonder what's the deal in IL? That just doesn't seem right to me.
L
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Lita57-
It is a corporation.
Also, I don't understand the difference in States. I talked with a Social Security person at our local Social Security Office-----Federal??? Wouldn't it be the same in all States if Federal.
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candy-678
I am sorry you have to worry about this work-related issues on top of everything else.
I believe FMLA can be taken a day or two at a time. I was able to do that. I was able to phone in on a given morning and say I needed to take the day off under FMLA. It's the law. They have to allow it. You do not need to explain the reason, you only need to have submitted the FMLA paperwork, and then you can take the FMLA leave as needed.
There are also some protections under the American Disabilities Act, i.e. an employer needs to make a "reasonable accommodation" to accommodate a disability. To me, having Stage IV cancer would qualify one as having a disability. It doesn't mean one cannot work; it just means someone needs accommodation, like more flexible hours, or occasional days off because of their illness. Again, it might involve some paperwork, but worth looking into.
good luck
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If you qualify for FMLA, you can use it a day or even a couple hours at a time. It's there to protect your job, so use it when you need it!
As for SSD. Consider talking with an attorney that specializes in disability. Don't try to go it alone. We learned that the hard way with DH. What should have taken no more than a year ended up taking 3 years, because we didn't know what we were doing. SSD always denies on the first try, but a disability attorney knows all the ways to get around that. Our attorney didn't take any payment until DH got his award. The attorney got a percentage of the award, I think 30%. DH has been on full disability for a heart/lung ailment since 2007, thanks to that attorney.
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I collect SSD and had no problems at all collecting - did it all with a phone call, did not even have to go to the SS office. They do make you wait, it was 6 months or so before I got first check. I think it may be a slam dunk with a stage IV cancer diagnosis. That was my experience.
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