Im bitchy, I moan, I groan.....anyway.
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WOW...weird...I thought I was on the last page when I posted that...but clearly I Missed something...LOL kjan....and others who responded, I can't finish all them now but Ill be on tonight when I have more time. Be well and if you can't do that - be angry! Grrrr!
HUGS
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Yes we all need to be our own health care advocate. If you do not like how you are being treated, speak up.
Have a good day ladies!!!!!!
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Sessna, you rock. thanks for all the advice, it's really, truly wonderful and I appreciate every word you typed. And you are so RIGHT about being our own advocate. Doctors are 'practicing' on us.
I'm dealing with the pain management doc tomorrow and get some more or different meds. I've been going to physical therapy and it's uncomfortable but I can tell its working. I PROMISE to not wash anymore drugs down with beer. And thank you for being my champions.
Husbands and boyfriends JUST DON'T GET IT. Some of them do, but those are rare. I wish more men would read what we write about, it would really help them too. I can't stand the thought of a child having to deal with this. Did you see the post about the 10 year old girl? She's a trooper.
That saying, "God doesn't give us more than we can handle". I have issues with that. I understand being challenged and rising up to it, but sometimes we do get more than we can handle and thats when we fall apart. Either physically or emotionally. And obviously, from this site, a lot of us are given more than we can handle. But we deal, or we lose quality of life.
P.S. That baby in my pic, is my first grandchild. I don't drink when she's with me, EVER. She's 5 months old now, and a really, REALLY good reason to be taking better care of myself.
YOU ARE ALL SO INSPIRING.
Love, Connie
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Hi everybody,
I am at work so I can't respond to everybody, but just wanted you all to know that I've just read every post and I love you girls, tons. I'm so sorry for everybody going through sh*t that sucks.
Jane, I was absolutely convinced that my cancer was back. Absolutely convinced, and absolutely (NOT) prepared for the bad news. I had a huge lump in my pit. Guess what? Negative. I still don't believe it. [Literally.] But, I'm running with it 'til my next scan!!!
Hugs everybody!!!!
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Sessna - I never realized men could carry the gene.
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Sessna, you're a love and a woman after my own heart.
Must be in the zeitgeist, because I just did a bunch of research on cancer related fatigue, which you all can read on my blog ("The F Word - F for fatigue").
I get my one year mamm tomorrow.
Hugs & a That Sux to all.
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Sessna1 - you are a woman after my own heart too! That was an excellent rant and right on target.
You are right when you say those people are in my life so I can learn to deal with them. I think it was Wayne Dwyer who said "we are most unhappiest when we want what we can't have." I can't change their attitude - just mine. And that's enough.
KAK - good luck tomorrow. Hugs and prayers.
Jane - I knew mine was cancer when I first saw a doctor just from the way she was acting. She was trying to be reassuring but I could practically see her brain going uh oh. That doesn't mean you have it. It was not a gut feeling - it was reading body language.
Connie - I don't know if God doesn't give us more than we can handle or not - I just know sometimes he's real close to the edge for my taste!
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Tomorrow's the big day. Talking to my therapist about fatigue and depression. I have been so so tired and following that comes depression. Feeling sorry for myself. Dark stuff. And I thought I was doing so well......
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Oh Dream, depression is an evil little ba*tard, it sneaks up on you and you're usually the last one to know. I hope your doc is encouraging and helpful...its the last side effect any of us want or need, on top of all the others ! We learn to crawl before we learn to walk, and when we stumble and fall - we have to learn all over again, just with bigger feet. I am sending hugs and prayers your way that you'll come out of there with a plan!
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Dream, I recommend clicking on my blog link & reading up on fatigue before you go to the doctor. There are physiological reasons why we develop cancer fatigue, mainly because our immune systems get very overtaxed and then aren't able to shut off. And all too often we get a glib response or no response from our docs, when there are tests they should run & treatments we can take.
So, a little info would be a good thing.
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Dreamwriter: There is nothing worse than depression which leads to fatigue (or vice versa) and an almost paralytic state. I was almost suicidal. Everything felt hopeless and I felt helpless. I was on Zoloft for years. My PCP increased it from 100 mg to 150 mg. Nothing. I spoke with a psychiatrist while hospitalized and he added Wellbutrin - 300 mg. It made all the difference. Very shortly thereafter I had a much better outlook and more energy. I pray that your doctor finds the right combination for you. Navygirl is correct - depression is an insidious little bastard which comes upon you slowly and before you know it, you are in the middle of it and don't know how you got there. You ARE doing well and taking the right steps to help yourself. Huge hugs and lots of prayers.0
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KAK-I just now read your blog - what a great writer - I was mesmerized. I couldn't stop reading it. You are an incredibly strong woman. I admire your tenacity and determination. My story is very similar to yours and while I had a bilateral mastectomy, and I know I had DCIS which is breast cancer, I have yet to accept that I had cancer. Its crazy but it gets me through the night.
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Dreamwriter - you are not alone. I'm sure a number of us felt suicidal during our ordeals - I have. I hope the therapy will help - please let us know if it does. My long-time friend said the Wellness Center is what pulled her through breast cancer twice, ovarian cancer and cancer in the lining of her lungs and now in her spine. She is pushing me to join a group to deal with the brain frog! I would have given up long ago if I were her, but she's only 54. We are trying to accept she is dying.
I know there are people worse off and sometimes I feel guilty for not being able to "just get over it." But, I can't - I know I used to be able to deal with stress, now if something stresses me I react manically. I can see it, but I cannot stop it. So, I'll continue with the drug therapy and fish oil, baby aspirin, lecithin and Vitamin E and see if my brain comes back.
I saw a new onc today - when asked why I was switching, I told him Big Pharm had too much influence on my last onc. His office was small and he said, look around, we are not a big corporation. I said that's why I'm here. He suggested the baby aspirin and Vitamin E and told me to start walking. I used to workout all the time, I'll give it another try - it depresses me that I get winded just walking across the street.
Insofar as "knowing" you had cancer, the weekend of my 50th B-Day, we went to Key West, and I celebrated extremely well. I was proud that I could still ride a bicycle really drunk and in heels! But, the next two months I kept complaining to my doctor about fatigue. I'd get home from work and just crash on the couch. The mere thought of exercising wore me out. Two months later the "Ravioli" tumor appeared on my left upper chest and the rest is history. It never occurred to my MD that it might be something other than "FIFTY". I see a wonderful DO now. Moral of the story: Listen to your body and go with your gut. I know I tend to expect the worst and hope for the best - that way I am not crushed when the worst happens. I wish I had my husband's optimism, however, when everything in the world that could go wrong has, it is difficult. I'm to the point that the only thing the industry has left in its arsenal is to kill me and boy I'll be pissed! I've endured way too much pain and agony - I swear, I'll hunt them down and I'll haunt them.
I talked to my niece, an onc nurse, regarding the lack of information/warning. She told me about a 20 yo woman who presented with severe leukemia. Her WBC was 160. They started chemo that night. Later she complained that no one thought to tell her that she would be sterile. No one thought to ask her if she wanted some of her eggs harvested. They were so focused on saving her life and following protocol, that her "real life" or the "real her" as a person, never crossed their minds. She was a disease, something to conquer. I guess that is how I felt to a degree, but more in the form of a dollar sign and perks. All my doctors are pointing fingers at each other - it is almost funny.
Oh, and Connie - I totally agree!
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Renee S, you may not shamelessly beg for prayers, because you have the right and blessing to ask for prayers, God's Favor, Blessings, Protection, and Healing. I am in agreement with Sis. Renee S's prayer request for excellent health and merciful tenderness for her and all those she loves and those that love her. Amen.
Renee S, where do men keep that 20% immature boy humor that gets them in so much trouble with us? See, this is why (at least in that Bette Davis movie) Queen Elizabeth sent Essex to the tower and wouldn't let him live unless he sent her the ring she had given him. Their pride cursed both of them; however, he overstepped his boundaries with The Queen. Only The King can do that, and not without repercussions, I might add.
Their playfulness can be endearing and then whip around and you want to send them to the tower - without a get out of jail free card. All I can say is that we are charged to work on our sons and the men we love to turn them into gentlemen... if we don't, their ex-wives won't appreciate our lack of effort. ‘Nuff said.
Thank you, Connie07. You stand firm, too. (smile) Babies lengthen your life - loving anyone's baby lengthens your life.
Okay, people, do not report me, but skip the next four paragraphs and we'll be okay, okay? Non-believers have rights, too. When you refer to verses of scripture in the Bible, you can't just take them one at a time or like reading a horoscope. The book of the Bible is a study, not an idea.
1. I'm not sure about a saying, but in the King James Bible, 1 Corinthians 10:13 does say, ‘...There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it. And the same Bible also says in Galatians 6 in verse 2 that we should bear one another's burdens, and in verse 5 that every man shall bear his own burden. I listen to LA station 107.9 FM, during which I heard a minister say that ‘bearing one another's burdens' means to put up with each others individual walk with God - have compassion for a person's shortcomings as he walks with God, and he should have compassion for yours.
2. I think the tempting part has something important to do with faith. I don't think it is fair to say that, "We are praying so hard that God must answer YES!" because that negates the faith we must have in God's Will for the circumstance. Example. Little girl has diabetes and parents and church group seek to pray it out of her. Wait a minute. God has made doctors, hospitals, equipment, medicine, and tools to fight diabetes. Go use them, use the talents and gifts that God has given mankind.
3. I'm the one who brought up seeing a pediatric chemotherapy patient at the City of Hope (hospital in Duarte). Just as my heart sank and despaired, my heart also knew that because I did not have pediatric cancer that I must work with all that God did give me to the best of my ability - praying and beseeching him for guidance and help. I have to do my best with the faith I have in my God who tells me that with Him all things are possible, even those that are not possible with men only.
4. Pain always taints the way that we see the future. It slants the world like a "Z." Sometimes you must call upon others for help, do some research to get help, or re-evaluate what you have taken on. You can worry yourself into illness over burdens that aren't yours to bear. Ask any mom...
Okay, let's resume. Some men do get it. Some extraordinary men who "man-up" and fulfill their duty as males and realize that a King must treat his Queen as a Queen - because she has accepted and given her heart to him. These men are hard to find.
Children need male and female input because we balance out each other - bless the single parent homes! We try so hard, and it's not possible for a woman to think like a man and visa versa. Science has proved our very different brains. There the children are trying to figure it out from one person trying to do their best. What would you expect to happen? Warring parents are a kick in the head, too. It THAT what they can look forward to?
We are ALL here to help the others to do the best that they can, people. None of us is perfect, and we don't have to be. We just have to do our best.
Jane M. I'm sorry. It's true. Your high school biology teacher let you down by not going over the genetics portion thoroughly.
Traci-----TripNeg, thank you. Testify to them that cancer isn't a "feeling." I will testify that you can feel great and be ill or feel ill and not be bad at all. Do not stress yourselves into deeper despair. Please, ladies. Don't go there.
mydreamwriter , please look into counseling benefits from your health plan. The stressors your body had endured may need Zoloft or another medication to be put under control. The psychologist is the one you get to talk with, the psychiatrist can prescribe medication, ladies. When you are depressed, or think that you are, you need both.
Kajan75, you have made my week, not just my minute, hour, or day. I, sessna1, nominate kajan75's phrase as the first official t-shirt of the community.breastcancer.org/forum.
Excuse me, it's the brain frog talking
And on the back,
"Yearly, monthly, daily care -Breast Cancer Awareness"
Be Good to One Another
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I wish I could take credit for it - it is Dreamwriter and she even has a picture. It is on the Quality of Life Board. I still laugh when I think about it. But, I'd love your line beneath the pic!
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BIG Sux to all that need it. I just read thru this and cannot remember all of it, but I wanted to let you all know that I am saying a prayer for you all.
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Sessna you're a sweet pea.
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Kathleen, thank you for your kind feedback on the blog!
Had my one year mamm yesterday. Went okay but won't get the full report till tomorrow.
Sessna, I agree with Renee. You rock.
((((((((( Dream )))))))))) Sistah, I have been to the wilderness of depression many times in my life. And treatment does work. Like many other things, when we are stressed and our bodies are working hard to fight the good fight, our neurotransmitters can be rapidly depleted, which then leads to depression. That's what seratonin is, a neurotransmitter, and the SSRI's and SNRI's help us replenish our stock so we can function. They should be checking all your blood levels, your thyroid, your liver function and a bunch of other stuff, too. These darn docs just have to step up to the plate and act like that M.D. means something.
Hugs to all.
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The therapist says I am not depressed. Sad yes, depressed no. I have too much sense of humour to be depressed. Thats me, bouncy bouncy..... What I also had was an untreated UTI and she helped get the doc and demand prescription. He was sitting on the report for urine test - seems it was contaminated so no response. That did no help the UTI. Once I started the antibiotics, I was fine. Still tired, but fine.
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DREAM - sad but not depressed? Garbage! I have a great sense of humor and I was practically suicidal before the combination of drugs I am on now. Everytime I see a therapist they tell me "at least you haven't lost your sense of humor." My mind, yes; my sense of humor, no. You have my permission to smack your doctor "sitting on a report." Have the read the symptoms of depression - according to the Internet:
Common signs and symptoms of depression
- Feelings of helplessness and hopelessness. A bleak outlook-nothing will ever get better and there's nothing you can do to improve your situation.
- Loss of interest in daily activities. No interest in or ability to enjoy former hobbies, pastimes, social activities, or sex.
- Appetite or weight changes. Significant weight loss or weight gain-a change of more than 5% of body weight in a month.
- Sleep changes. Either insomnia, especially waking in the early hours of the morning, or oversleeping (also known as hypersomnia).
- Psychomotor agitation or retardation. Either feeling "keyed up" and restless or sluggish and physically slowed down.
- Loss of energy. Feeling fatigued and physically drained. Even small tasks are exhausting or take longer.
- Self-loathing. Strong feelings of worthlessness or guilt. Harsh criticism of perceived faults and mistakes.
- Concentration problems. Trouble focusing, making decisions, or remembering things.
- That's depression. They used to think it was a finite condition that last about 6 weeks. They now accept the fact that some people are chronically depressed and need meds all the time.
Anyway, you know how you feel and what is best for your body. Go with that. You are not crazy or sad. If you have these symtoms you are depressed and deserve something more than a brush-off.
I know I was depressed - I had all these symptoms!
God Bless you.
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Oh Dreamwriter, I always appear "up" to a doctor - I don't know why, but my whole family does it too. I'm thinking it's genetics. However, a month ago, I finally told my doctor how depressed and manic I felt. My boss saw it before I did. We're working on rewiring my brain, so that I can deal with stress and may be remember a name. The long-term SE of the drugs aren't known. There hasn't been enough research, hell the T1-2 "nerve regeneration" pain was only "discovered" in 2000. How many women were diagnosed as schitzo prior to one doctor seeing the relationship between the surgery and the pain? They may be aware and want to help, but Ritalin is the protocol and that is where it ends.
Please find a Wellness Center - I hope you have one in your area -- or a new doctor! There isn't one near me, but this blog helps me immensely. You guys aren't telling me to "just get over it." Guess the ole' misery and company crap. I just want to feel good again and think clearly. I actually had some woman in a waiting room tell me she'd take on BC if it would help her lose weight. I told her I wouldn't recommend it. People have no idea, they think you get new boobs and everything is fine - it's not fine and I would take my little B's back in a heart beat.
Let me know how you are doing. I still smile over the frog. THANK YOU.
K
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Kathleen, I'm so glad you posted what you did, because if you didn't, I would.
Dream, dream, dream...preserve us all from ignorant if well-meaning healthcare clinicians who only get it partly right. I'm very glad that you are being treated for a UTI, because that will certainly knock the wind out of your sails. However, any therapist who's worth the paper their degree is printed on knows that depression is a clinical illness and that, like other illnesses, it doesn't present in one flat, uniform way. People with depression often, if not most of the time, don't "act" depressed. They act like themselves. They laugh, they get pissed off, they sleep, eat, poop & burp, but ultimately, they can't get out of their own way & they may sometimes not give a rat's derriere about it all.
Just as I have seen with fatigue, I am sick to pieces of clinicians who do not do their jobs properly and thoroughly and employ the appropriate diagnostic tools before they make a diagnosis. That means having a patient quietly & privately take a depression assessment inventory, like the one that Kathleen printed. Also, I find that if a person feels like they're depressed, they usually are.
Trust me, dream, I'm the funniest, feistiest, wittiest depressed person you'll ever meet. My personality is chipper & outgoing & cheerful. But I suffer from an illness called depression, which, when it is not treated, may not affect my personality, but does make me feel like I'm pushing a boulder up hill. All the time. Depression is an illness. Like diabetes. Like cancer. It's frequently invisible to the naked eye.
So, do get over that illness called a urinary tract infection. And then find someone who can & will assess you properly for the illness called depression. And treat you properly if you have it.
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Very well, kajan75, dreamwriter is the originator of the term "brain frog." We shall give credit to the sister where the credit is due. I'm up for brain frog hats! A nice pink (not girly girl pink) with a green frog sticking out with an expression that says, "What was that again?" Thank you for at least one vote for my line beneath the pic.
Renee S and KAK and fellow Sisters, have I told you that your kind words to me pump up my heart with warmth? They do. I thank you. I will rock on.
I gotta sign up for the one year mamm, too. Mamm and Pap. Ain't that a kick in the head?
Dreamwriter, I once passed a depression screening with flying colors once and I was so depressed it wasn't even funny. So much for screening tools. If you want a human answer, you need a one on one human assessment consult, not a list of check off questions. Please, as KAK said, don't take no for an answer. I sure didn't. I got myself some real help.
Too great a sense of humor to be depressed? Oh, so that's why comedy stars and celebrities and people who appeared "just fine" end up self-medicating. Your sense of humor is showing how STRONG you are, not how depressed you are. Anyone who says "funny people" can't be depressed should turn back in their certificate of completion from [fill in] ... it's obviously no good.
A bag of flaming horse hockey on that therapist. A large bag of flaming road apples on that therapist's door step.A UTI can make you miserable, but it ain't the same as depression. Don't let anyone shine you on as the military is doing to our current veterans.
I second kmccraw423's words. Yes!
Kajan75's words, too. The clueless people will have you in tears when you could have been getting some real help.
Sometimes I run into a person who says, "I never have headaches," or "I'm always upbeat." I just smile at them. Pre-spine surgery, I learned to hate the phrase, "You look fine." I was ready to let Dr. Kevorkian take me out to dinner at my lowest point. See, when you spend your auxiliary energy saving your face against the world, you are really on your last leg before a melt down. NOT a break down, I said a melt down: You melt into tears or retreat into your bed and you can't stop crying or just wanting to sleep it off. That indicator, "Feelings that things aren't ever going to get better" is a card carrying red flag of depression. Lack of concentration, frustration, brain fry (a cousin of the brain frog), short tempered, lack of enthusiasm to do anything, not having the energy to do what you usually do happily, anything escapist including the far extreme of looking seriously at Cirque du Soleil wanted ads...
Not all clinicians, therapists, psychologists, and psychiatrists are the right one for YOU. Any one who cannot mirror what you have said, i.e., they show that are paying attention to you and noting your nuances and personality and defense mechanisms - which usually takes more than one session - any one who is not listening to you is not helping you.
Fight for the people who love you and the people you love.
Only the government can legally tell you that you are okay when you are not okay. It's part of their job.
-sessna1
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Good Morning Ladies, I have not posted for a couple of days, because back to school means back to work for me!
Dream even itf you are not "depressed" is there not tx you could do. I was not depressed, but med onc put my on Effexxor XR to help w/ tamoxifen se's and let me tell you it has been amazing. I had my ovaries removed and have had minimal meno symptoms and seen to have a better outlook on things. Good Luck. Try a belly dancing class, it is something I did for relaxation while my DH was in Iraq!
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When anyone says Hi, how are you, to me I don't answer. They don't really want to know! So when I go to the doctor and he says, Hi, how are you, I say, Well, if I'm looking at you I can't be doing too good, right? I think it's a trick question!
Dream, I am the funniest person I know, truly. But my humour is a shell that hides a soul that is ripped to pieces. I am just lucky that I can laugh at my depression. It is often just a chemical imbalance in the brain. I had one doctor say to me years ago (before bc) that of course I should be depressed, look what I'm going through! That was very freeing and allowed me to admit it.
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Barbe..you are the funniest person I know too! And your words struck a cord with me and I suspect many a funny people reading it would say the same thing is true for them.
Dream...(((hugs)))) I can't really add to what's been said. I seems all the bases are covered and the profiles have been drawn. I'll just say; Be good to yourself, truly, your inner self. Don't settle for an explanation if you know it's more than that going on. Better living through pharmaceuticals I always say!
I'm still on the hunt for what ailes me...today has been a good day pain wise, and for that I am grateful. Life is so much better when your body isn't screaming at you all day
I'll have an ultra sound on Monday for the lump on my arm...I'm going with a cyst, especially since I have one that popped up on my back as well. Funny, before I had my ovaries taken out I often got ovarian cysts. Now that the ovaries are gone the little buggers feel they can just pop up anywhere! I could live with out them I hope you are all well...it was good to have some time to catch up on some of the other threads last night...so much going on here it's hard to keep up!
((((HUGS))) to all of you, I think of you often and am very thankful I have this place to come lay my troubles down.
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Sessna1 - I like the hat idea, it would go well with the T. You have communicated (wrong word - I know) the depths of depression very well. My boy (husband) has seen a big change since I started the drug therapy and quit watching the news. He said my old personality is coming through. God, I hope so. I had a rage that wouldn't go away.
Mary22 - I was on the Effexor after I slammed into menopause, but didn't take it one night and was amazed at how "good" and "uplifted" I felt. I quit taking it and was "manic" for a couple of days, but I had energy and felt good. That lasted a couple of months, then I had my ninth surgery and everything changed. So, I truly believe it is the combination of everything that causes brain frog.
Dream, I wish you good luck in finding another doctor - I'm glad I did. Let us know if you do.
NavyGirl, if you have "cage" pain, look at cancerlynx.com - "nerve regeneration" pain. I had no idea what it was or what it meant. Acupuncture seems to be working though - I haven't taken a pain pill in over a month! I had to search for information, because they don't want you to know that it is caused by injury to the nerves during surgery (especially the right side for some unknown reason). I empathize, as just opening a door or picking up a file can cause a stabbing pain to my upper back or a shooting pain in my left breast - it can even feel like I have a very tight bra on, when I don't. My surgeon really didn't know what it was - I was his first. Wonderful. The story of my life!
I'm going to go have a shot of Bailey's and lighten up!
Take care all - Navy, I agree, I don't know what I'd do without this group.
THANK YOU ALL,
Kathy
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Listen, I just want say, like Navy, that I'm so grateful that all of you are here. I've had a very weepy week. I'm so darn relieved that I've gotten past the one year mark & that my one year mamm was negative & that maybe, just maybe, this goshdarn burden I've been under for the last year feels a little bit lighter, I've been crying all week at the drop of a hat. I think I don't allow myself to realize sometimes how hard this is all is for me, as it is for each & every one of us, while I'm in the midst of dealing with it, you know? It's when you get a chance to maybe take a breath that you feel the intensity of this awful road we're all on. I hope this makes sense.
I love you all. This is a strong, brave, kick-ass bunch of women here, who put one foot in front of the other even when everything absolutely SUCKS! It really helps just knowing that you understand without a big long explanation. You just can't explain this cancer trip to someone who hasn't been through it. Hugs all around.
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Hi Kathy, THANK-YOU!!!!!!!!!!!
I have had a stabbing pain in my back for months now, on my rib right by my bra strap!!!!! At first I thought it was pain from coughing during allergy season, went to family dr and had him listen to lungs, clear, I did have a sinus infection. Then I had f/u w/med onc she said it just takes time to recover. I then went to see rads onc for a f/u appt and he sent me for a bone scan and a chest CT, both showed nothing, so he said I could have a small fracture which was not detected.
I missed a dose of Effexor and had a horrible arguement w/DH, just because I was moody, that was back in May or June. I have been feeling pretty good otherwise.
Kathy, where in Tampa do you live. I lived in FL for 13 yrs and graduated from USF in 1992. I lived in Oldsmar, Dunedin, Clearwater, Largo and New Port Richey. I now live in the Poconos, but I am orginally from Michigan, the Detroit area.
(((((Hugs)))))) for all.
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Kathi, you said it, this si my support group!!!!!!!!!!!!!!!!!!!!!!!!!!
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