please help
Comments
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Debi! Welcome! It's so good to have you here! (Although I wish you didn't have to be here). oxox
Lisa - so sorry you have been feeling unwell with sinus etc. Hope the new glasses make a difference. That's good news about Kim's bloodwork. I hope she continues to hear good news.
Karen - good news about your scans etc - but what can you do about the pain?
It must be raining all over the world today! It's rained here all night and is forecast for the rest of the week.
Lucy, if this is your first post on this thread, welcome - the more the merrier!
Cheryl, how is your son? How are you? I pray you aren't feeling too sick from your tx.
Cathi, when will you hear about the results of Jaclyn's scan? Thinking of you both. I love the photos of your grand daughter and Margot.
My sister is leaving hospital this morning and has been told she must rest at home for at least 2 weeks. She may have to have surgery in a month to remove the kidney stone.
Yesterday, my mother was admitted to the same hospital as my sister. They think she has ovarian or some sort of intestinal disease. They want to avoid doing any invasive tests so I don't know how they will make a dx. I suppose they will just keep her as comfortable as possible.
Barbe, Sheila, everyone, lots of love to you all.
Jane xxxoox
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Jane -Jaclyn won't have test results until 5/27, a dam long time to wait again, she is much more patient than I. Glad your sis gets to go home, maybe she will get lucky and pass the stone and won't need the surgery. So sorry to hear about your mom, boy life sure is dealing you a crappy hand right now. The DR told Jaclyn they would do the LEEP again if the margins come back dirty, but I think she has decided to go back to my GYN's office and will see the specialist there and have the hysterectomy, that is what she is saying now anyway, it so stinks that at 28 she has to deal with all this, she says she will opt for the total hysterectomy (ovaries and all) to decrease her risk of BC.
My DD in NY said she is forcing her DR to schedule her for mammo, she is 27, and her DR says protocal says she should have her first @ 36 (10yrs younger than my DX age) she (and I ) say the Hell with protocal, she is scared to death, she said to me that 75% of the woman in our family have had CA, me, my mom and her sister, pretty stinky odds. That doesn't even take into account my grandma (moms mom) who also died from Lukemia.
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Cathi, that is such a long wait and I do feel for you both. I am sad for Jaclyn - she is so young to have a hysterectomy, the poor, sweet girl. It is hellish for you too. You love her so much and to see her go through this is just heart wrenching. I pray for both of you. I can understand why your other daughter wants to have a mammo. I am wondering if ultrasound and/or MRI would be better than mammo for her as she is likely to have quite dense breasts at her age? She is also too young to have to worry about all this cr%#p but it's best that she is pro-active.
Hugs to you all
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Lisa, praying fo ryour friend Kim. B9!!!!!!!!!!!
Karen, glad things went OK! We miss you. I haven't had a lot of computer time recently either. Life is getting busy!
Welcome Potty Mouth, I mean Deb!! Hope you enjoy and stay awhile!
Praying for Jacki too. Cathi, I hope you are all holding up as well as can be expected. Waiting sucks!! Give Margo a hug!
Hello to everyone else!
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Hello ladies,
A quick post to say hi to everyone.
Karen, so glad you do not have to have surgery on your hip. Hip pain is no fun, I know. Since my accident I have had it, have had to have the PT put my leg back in the hip joint a few times (and my chiropractor did a few times, too). Something about the seat belt buckle hitting the hip. When the leg is out, it is about an inch longer than the other leg and I wobble when I walk. REally sexy walk, LOL
Cathi, warm hugs. I know you are hurting so much for your daughter. She IS so young. My prayers are sent to you and her and your family for this time you are going through.
Jane, thank God your sister is on the mend. What a relief.
I know I am not getting everyone, but know I think of you all often.
My son is having problems with his memory. He can't remember things he has done just yesterday, even in the early part of the day. His mind gets overloaded easy. It seems to be getting better. I hope so, he is 27 - can youth still be on his side? I see him struggle, trying to find the words he is trying to say and they are just not there for him to speak.
I had my first AC treatment yesterday. It sure is done differenctly than the taxol. taxol was compley with sailine, this is straight shot in you. Such a bright red! then they add the saline to do the cytoxin. Takes just as long as the taxol. I noticed se's yesterday. Eyes alredy getting dry, nausea - ate dinner and had a hard time keeping it with me (am taking compazine for that) and already feeling the tiredness that everyone talks about. Was fighting sleep all afternoon. If I gave in, I'd probably be up all night.My vision is really foggy today, don't like that at all. Good thing I don't drive, lol
My doc gave me steriods for my lungs as my asthma is acting up and THAT is what all that coughing has been about! And, since I am finally done wiht the taxol, he has given me neurotin for the pain I still have - said it would be uselss to take it with the taxol still in my system. Was nice to sit and not have pains in my legs and arms today and it seems to help with me moods, too.I already take a seizure med as I have those, but this adds to it and it seems like a benefit. I see my neurologist soon and we will discuss me staying on it longer.
Tomorrow is my Look Good Feel Better class. My gf and I are going and I said I don't care if I'm dragging I need this! No eyebrows, hardly any lashes left! What hair is there if it grew, I'd look like the crypt keeper, lol And being with a bunch of other ladies dealing with this and having fun with makeup and hair, etc., sounds like fun. Carol and I will be doing lunch afterwards as she says: we will be looking nice so we have to do somehting!
WEll, that's about it for now, off to bed. Finally, that pillow looks so inviting.
Take care, hugs to you all,
Cheryl
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Cheryl, good to finally hear from you! Your son is still in my prayers...what is his prognosis? It must be breaking your heart....
Jane! Your mom now! Sweetie how are you handling all this! These are the people who should be strong for you, not the other way around....
Cathi, that is why Jaclyn had her children young, because she was fated to get a hysterectomy. I wanted one at her age due to fibroids but they wouldn't do it, even though I'd had my two kids already. I had to continue for another 20 years with problems, pain and heavy bleeding before they finally did it! She is still in my prayers....
To everyone else...HUGZ
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Nana - good to hear from you, hoping things with your son improve quickly. Let us know how the class goes.
Well Barbe you are pro ably right, I actually had an Epiphany the other night wondering why the hell God decided to dump all this crap, now mind you I grew up in a VERY CATHOLIC home, I still very much believe in God (although Church is not a regular thing on my agenda) BUT!!!!! All this still makes me quite MAD at God -many times. I never thought I was that bad of a person that I needed to get BC and my daughter get cervical -to 'make me appreciate all I have" I appreciated, loved and respected my life (well after the divorce & finding Ed), I really didn't need all this. But anyway I did realize that if I were to kick the bucket tomorrow, I have really been lucky as far as having a "true love" in my life, someone who has respected and loved me without any conditions, I have 2 daughters who finally (teen years sucked- LOL) who love and admire me, and I have been able to see them grow into great woman and moms. I have 4 beautiful grandchildren, my bucket list is still pretty long - but we shall see.
Ok I know I sound morbid, my dear friend told me that the other day - but sadly enough my mortality has been on my mind lately, I guess because of Jaclyn, maybe because of my aches and pains, I don't know, I hate CANCER - it does change your life forever. I liked my life before.
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Cathi, I agree about the morbid thing. I go there too. People really hate to hear it! Too bad...
You know, 'They' do say, God doesn't give us something we can't handle. Of course, only those of us still standing know that!
I,too, was raised very Catholic (fish on Friday!) but don't believe in church. Wherever two or more are gathered in His name, is what I believe in.
I could die today and know I lived a great life. I've had a lot of hardships and pain, but to me, that's what life is about. If you're not feeling SOMETHING, then you're just existing, not living.
I know I have lived, and lived hard!
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That is the only topic Ed really hates and pretty much won't talk about, just the other night, I was really going there, I know it upsets him, but sometimes it just happens, I was planning which girls should get what, I asked him if he would keep all of our pictures if he ever remarried, I hate when I get like this.
You know if I had gotten sick when I was married for those 20+ years I would have considered my life a waste (except for the DD'S) now it feels like that part never even exsisted - so like you Barbe if I went today LIFE HAS BEEN GREAT!!!! But I am aiming for a few more years.
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Well thank you Meg, not sure that I should be aadmired, I have not always been very accepting of my battle with BC- while I think much of the time I have done my best to 'roll with the punches" many many times - I have bee on the DARK SIDE, I think I am revisiting that side again these days. But THANK YOU
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Thanks Meg, it takes a crappy first marriage to really appreciate a good second one! Thank God I've had that for 16 years! I feel very blessed.
My DH will listen when I 'go there' because he knows I need to say it. No one has guarantees! Certainly not me.
I must admit, I've been pretty accepting of my cancer as so many in my family have died from it! At least 12 at last count....I've just been waiting, not wishing, but waiting...I've always assumed I'd die of cancer, just maybe not yet please.....I've got the kids' weddings this year and want to hold at least one grandchild.
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You are so RIGHT about the marriage thing Barbe - SOOOOOOOOOOO Right.
Ed will start out listening then quickly trys to change the topic, always saying "your not going anywhere" I understand, )OMG who would want to lose me - LOL) but actually a few years before I met him avery dear friend of his was DX with Stage IV Lung cancer that had spread, it was not operable, Robert refused any kind of treatments and decided to take the possible 6/MO the Dr's gave him, Ed has talked some about it, but I have learned a lot about what happened from his brother and other mutual friends, after about 2/mo Robert got really bad and did not want to go to the hospital, so Ed moved him in with him and (oh it makes me cry ) was completely devoted to his care (they did have hospice), Ed spent endless days and nights caring for Robert, feeding him, changing him, trying to create tasty juices for him to sip , trying to help him through unbearable pain and hallucinations some of the drugs caused. He passed away at about 5/mo after DX, and Ed's bro and friends have said Ed was not good for a while, always would say he could never ever watch anyone he loved so dearly suffer such a horrible death again in his life. So I understand his averting the subject.
Barbe your prayer will come true - I'll pray it for you too. My biggest prayer right now is that if there is more to be learned about CA and life in my family, let me be the teacher NOT MY DAUGHTER.
Well sorry for being so depressing everyone- Geezzzzzzzzzzzzzz
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Not depressing Cathi, so important to talk about this kind of stuff. Besides, the more we all talk about things like this the less scary they become. Our world is so focused on living that we all forgot about dying and how it is a part of life. Doesn't have to be scary or painful- our world has made it that way. At least thats what I think.
Elaine
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Meg- Its has taken me a long time to really figure it out and get it. There is no one way to feel about all this. There is such a range of emotions and ups and downs. No one way, no right way to do it, just your way.
Love the shiny red shoes!
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I have shiny red shoes too! But I have to wear them with pantyhose and I refuse to wear pantyhose in May!
Cathi, my heart breaks for Ed. He must be wondering what HE has done to get two, now three, important people in his life affected with cancer! I think my family has backed off me because my Dad died of lung cancer and they don't want to go through the emotions anymore.
Tell Ed this: We urged my Dad to get everything. Surgery (why he didn't get his whole lung out is something I can't figure out!), chemo, radiation and everything that goes with it. At the end, 2 years after diagnosis he told me, 'If I knew the treatments were going to make me feel so sick, I'd rather have done nothing and gone in peace.' Or something to that effect anyway. So you see, he didn't LIVE for another 2 years, he DIED for another two years. It was horrid watching him shrivel up and die after all.....
So, when I go, I go with 'tude!
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Well MANY THANK YOU'S again Meg, and I love the shoes -I am a shoe JUNKIE- wearing shoes in my honor makes me smile.
Elaine is very right -there is no "RIGHT or Wrong" way to deal with all this, that is the one thing I love the most about this very thread - its so VERY OK to come here on Good and Bad days , you will always find someone to listen (not judge) and the most support you could ever want or need.
WAER THOSE SHOES WITH ATTITUDE MEG. xoxoxoxoxoxox
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Barbe- that is such a good point! Living while dying vs dying with treatment. I wonder a lot about just because we CAN do something does it mean we SHOULD do that thing. Not just with this but with the technology, science all kinds of different things etc.
Cathi- what an amazing man Ed is, life is good.
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Elaine, it's a really tough call, but one I know the Stage IV ladies talk about a lot (hugs), quality of life versus quantity. At what point do we say STOP I can't take anymore! Everyone wants to see us 'fight' but there reaches a point, surely, that it is so much easier just to let go......
I read what I am hoping was a very stupid quote: "Most cancer patients getting chemo die of starvation rather than cancer." That is one of the saddest things I have ever read...
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Barbe your statement hit home for me , Elaine please I do not men any disrespect, I could never (at least yet) imagine all you are going through at Stage IV.
My mom refused any treatment when she wa s DX with the liver CA, the Dr's told her trreatments might give her a few extra months , her Liver Cancer was unknown primary, so they really were jus going to be doing a guessing game anyway, and she was already in renal failure from the diabetes, she lived 3/mo from DX, she died in my house, but even with Hospice and drugs, it was horrible and painful. Now I am at a point where my onco WANTS me to go for tests (bone, PET, MRI - you name it) because of the leg hip pains I am having and some abnormal blood work - well heres the thing I DON'T WANT TOO!!! Is knowing something else is wrong - A BETTER THING - I don't think so. I REALLY AND TRULY DON'T.
No matter what - good or bad results my maind is sometimes cnsumed with 'THOUGHT" if things were bad should I also consume my body with drugs and treatments. I don't really know how to explain except to say for me "KNOWING" is worse than just living blind and dealing with the ocassional "what if somethings wrong feelings" I am sure that makes no sense.
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Just weighing in with my experiences in the treatment/no treatment conversation.....most of my dads family has passed with some form or other of cancer and when it was his turn he wouldnt even go to the doctor.....when we finally got him to go because he was in so much pain the cancer had spread most everywhere......they wanted him to have tons of tests ran but he refused....I stopped to see him after work at the hospital one day and he was dressed...I was shocked....I asked if they released him and he said no, but he was going home with me anyway.....I loaded him up and took him home to mom.....his last wish was to spend his favorite holiday at home with those he loved.....July 4th was his favorite...I brought him home June 29th and he passed on July 7th so he got his wish......they gave us tons of meds to keep him comfortable and thankfully they worked.......
At first I was angry at him for not seeking medical attention when he first started feeling crappy, but as time as gone by I realized that he had watched and taken care of multiple family members who went through treatment and he made HIS choice to spend the time we had together with quality instead of being ill from treatments that werent going to change the outcome to begin with....
Its a very individual choice and no matter how hard it is I will ALWAYS support someones decision to do or not do treatment....
For myself when the time comes to choose Im not really sure what I will do but I do know that I under no terms want to be a burden on my family or for them to have the memories of suffering...
Im sorry I dont post much then come into your conversation and write a huge post but I do read each day and keep all of you in my thoughts...
Hugs
Jule
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Cathi, I am so sorry for all you are going thru! I expect we all go thru the dark days of what if...Gentle hugs dear lady.
Many days I think the ostrich approach is the way to go
I think each of us has to do whats right for us and our families.While we all want information, I believe there is a thing called "too much information" There is so much pressure to "fight" and keep going and do everything possible, but in the end its such an individual and personal decision. No one can know your heart better than yourself. -
Cheryl, I have been thinking of you and your son. I'll keep you both in my prayers. Have fun at the Look Good seminar!!
Meg, Have fun in those shoes! I'm jealous!! KAK has a kick ass pair of red shoes too. It sed to be her avatar!
Barb and Cathi, I go down the morbid road too. I bet we all do. Sometimes I feel great and don't think about dying, but I usually go back to thinking about it. I too was VERY catholic, 12 years of Catholic Schools etc. My family still is, I just can't bring myself to go to church. I guess I am mad at God too. Sounds so silly to write that, but I did everything right, and here I am. My husband does talk to me about dying, or at least listens to me. I know it makes him feel very uncomfortable, but he knows I need to vent. I think it's important to get it out, so we should continue to vent either here or at home. Imagine all those people who can't talk about this with there DH or SO? We are lucky that we have AWESOME men!!
I also feel bad when I complain about my health when I hear about others. Let's take Barb for example. Between you and your DH, you have a LOT going on. Same with Cathi and Jacki. Yet, both of you continue to come to these threads to make us laugh, share info, vent or just listen.
I think we need a group HUG!
Love you all! Gotta run!
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HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG will this do?
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Does this work - LOL
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Linda- NEVER feel bad about "complaining". Each person's journey and situation is so different. No way to compare.
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My aunt was diagnosed in 1978 (at 37 yrs old) with mets from unknown origin primary cancer that showed up in her hip area (Jan). She was sent to NC Baptist and had all the diagnostic tests done that was available at the time and they were not able to find the cancer. She took chemo and rads, ended up with spots on her brain (May/June). She spent that summer in and out of Baptist for more tests and they still couldn't find the primary tumor. We had a wonderful summer though, taking a day and touring the Biltmore House (on her bucket list) and going back to the beach for a weekend (also on her list). She passed away in Sept from excess fluid around her heart and lungs caused from some of her meds. My uncle, who was a physician assistant, requested an autopsy. Her cancer was in her ovaries but so small it didn't show up on the scans. If she knew that it was in her ovaries she would have had them removed. I decided that if I was to be dx with cancer, I would do my best to treat the cancer but still have a good quality of life, that is what my aunt did.
oops, while I was posting several others added hugs for all. It is a personal decision about what treatments you want for you.
Sheila
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Elaine your right about the "too much info" I sometimes wonder did "knowing" I had BC so early really do me any good??? It did NOT make me a better person - that I know for sure. What it did was cause me fear worry sadness for a good many days, it forced me to have 4 surgeries + 6 other biopsies, I lost my breasts in an attempt to save my life - and yet with all the so called Heroic measures I still live in fear some days, did doing all this really change what has already been planned for me??? Oh for sure I want to live another 30+ years, but honestly I don't think thats in the cards for me, so my dilemma now is do I just continue life as I have it now with these occasional "weak moments" or get possible news that will for sure make me think about my mortality being alot sooner than I planned on. Right now I say live in a bubble and live as HAPPY as you possibly can.
Maybe some people would consider that WEAK or Giving up, I just don't.
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Wow, Cathi. I listen to you, and it could be me talking. I was scared to death when I started having aches and pains. I knew the onco would send me for diagnostic tests and I debated whether I even wanted to tell her. I found out at my last appt that she's never ordered tumor marker blood work for me. Now she's going to start adding that, which I guess is good, but that terrifies me too! I hate this feeling like I'm a sitting duck, just waiting for this damn disease to come back. I'm so sorry that your family has lost so many members to this freaking bootface.
Hugs to all,
Karen
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As for my hip pain, who the heck knows? I guess they think the physical therapy will help. I guess we'll see......
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I know you have been so worried Karen, I have always hated the blood tests, I don't know why and wouldn't you know finally "the little red flag" goes up. I know thats not a FOR SURE indicator, I asked my onco last week if he was to step back in time 50or 75years and not have the advantage of so many tests, given my history and the things going on with my hip and leg what he would "DX" if it were a family member for him - he kinda just looked at me weird. Never really gave an answer, but did say he would advise anyone in his family to have fight - well I don't think not having tests and treatments is NOT FIGHTING.
Oh well I know I am not doing anything until I get through all this with Jaclyn and my DD and grandchildren make their visit in June, bootface has already darkened to many other special times - not this one. And I sure as heck am going to be there for Jaclyn.
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