Just diagnosed, how long until ny life has some normalcy again?
Comments
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LOL-
See what happens when you don't run spell check? I most certainly was NOT referring to you as whores!!! Big typo mistake!!!
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Ellen - congrats on showers and invites!! What a great way to have happy focus in your life!! And, you will give it all of the prominence it deserves, I'm certain, because it's just the ticket for seeing past your bc and into the future that's ahead!
Happy V Day!
Susan
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Just wanted to wish everyone a Happy Valentine's Day! The little group on this thread has turned out to be one of my favorites, and I just wanted to let each of you know that.
Samian ~ So nice to see your avatar and finally have a face to go with the screen name! How is your recovery from surgery going?
Donna ~ I hope you're much improved today. Your PM mentioned cording. Do you know if the PT you're seeing is specifically certified in lymphedema? There's an extremely knowledgeable woman on these boards from whom I've learned a few interesting things about lymphedema. I'll have to find and direct you to some of her posts for you if you haven't already found them. One of them explains how to check to be sure your PT is lymphedema certified, which, surprisingly, many are not.
Hugs to each & everyone here ~ Deanna
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I'm going to have to agree with you Deanna- This is on top of my favorite thread list! CONGRATULATIONS on completing treatment!! That is soooo awesome, you must be beyond happy! And just on time for Valentines Day! I do hope you have something special planned as some sort of celebration. I can't imagine how thrilled I am going to be to get this over with! I do have a year of Herceptin but it's the end of chemo that I will be celebrating with GUSTO! I don't think the Herceptin will be too bad at all though I can't truly be "done" till that's over. I can deal with that!
Hearts, love and hugs to all.
Ellen
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REKoz - I had to go back to see where you referred to us as whores - I'm laughing so hard that my contacts are floating!!! I never noticed it the first time through!!! Oh, that's too funny!!
You're right, this is a good thread!!
Susan
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Ellen ~ echo'ing what Susan said! So glad you didn't go back and simply edit that typo. It's too funny!
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So happy to have amused you folks! I am a HUGE fan of laughter and have a rep for provoking it with such impish pleasure! Though, that one was not on purpose! I figure if I can't laugh at myself it means I am taking life way too seriously!
Susan- I am sooo jealous that you can wear your contacts! Firstly, I find my eyesight a tad screwy since I started chemo. I've read many have had similar experiences. Even with my glasses, I find myself moving my head for a clearer view to no avail . Then there is the dryness issue which seems to effect every part of my body except for my friggin nose. I think all my body fluids have traveled there. Between chemo and Herceptin, it runs constantly and looking down at things has become impossible without streaming! My dry eyes would not in the least be welcoming to contacts. I miss them!!
You were fortunate enough to avoid chemo right? How are you doing on Arimidex? I think it's Femara that is on my horizon and I am not particularly amenable to taking it!
Ellen
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REKoz - What is it with the nose?? As you say, I'm as dry as a prune every place, but my nose, which drips constantly! My contacts aren't great, but I'm still able to wear them week days to school. No, I didn't do chemo. Probably due to wide margins and low oncotype score. Are you doing it because of the HER2+, 'cuz we look fairly similar other than that?
I'm off Arimidex. I was having bearable SEs, mostly painful joints, but Mon. night, I ached from my neck to my toes - it was very unexpected and very unremitting!! I had a follow up with my med onco the next AM and he took me off it then and there. I just figured he'd tell me to suck it up and deal.
So, I guess I'll be going on Aromasin in a few weeks.
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Samiam - I am 2/3 of the way through the process that began for me in mid August of 2008. I had 4 rounds of heavy duty chemo and then had a partial mastectomy on Jan 20th. Radiation for 6 and a half weeks probably begins the first week of March and I have been on a drug called Femara for the past two weeks. After that I will get blood tests every 3 months I think, scans, etc so it doesnt seem like its ever really "over". My prognosis did worsen after my surgery and pathology report came through.
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I was diagnosed with IDC, grade 3, triple negative on October 22,2007 (it took from initial mamm in late August to get to this point). I have a lumpectomy 11/1/07, Chemo started 12/26/07 (Merry Christmas) and finished 2/26/08 (apx) -- Taxotere and Cytoxan. Then it was 33 rad treatments. I did well until the last week of treatment ... then I burned pretty bad. I had most everything that could go wrong during chemo that could go wrong. I was diagnosed in late September with truncal lyphedema --- my breast scarred badly and hurt all the time .... talk about a constand reminder. I believe that I have done well through it is .... I have had about 3 real meltdowns (long story on those) And, now, it is February 14th .... and I cried all day ..... Most days my energy is back but I still have some days that all I want to do is go to bed and take a nap. But, I know that what I experienced today was not from exhaustion but some personal struggles (no eyebrows yet, leg hair finally grew back and now it grows 3 X as fast, my hair is thinner, curly and a lot less manageable than before chemo) and I remembered that in 12 days I will celebrate surviving chemo 1 year later. My first onc told me that I would not survive 4 rounds of chemo ... that I would die. I think that I am going to go and visit him .... and maybe even consider a legal action against this man ..... he took my hope and I grieved that today. It seems that the stronger I get physically and mentally the more angry I am with this do-do head onc.
The answer for me is the same as many others .... I am living in a new world -- a new normal -- a thankful that I am alive and pray that I will see my grandchildren grow up. Most days I am joyfull that I found a well respected onc who told me that he saw no reason why I would not survive chemo. He doesn't talk much but he has gone to bat for me when I needed him to.
I am sorry if I sound too down ... life IS really good now .... and I have been learning how to have more patience with myself and as my supervisor has said over and over again to me: Be gentle to yourself. That's what we all need to do.
God bless you all!
Kay
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Oh Kay- My heart goes out to you! WHY on earth would the Dr. say you wouldn't make it through chemo? That is MOST inappropriate under ANY circumstances! And you are basically early stage to boot! UNBELIEVABLE! I most certainly would look into legal recourse, although I don't know about a cause of action. Oh yes I do now, pain and suffering and God knows you wouldn't need too much proof. I wonder if that would stick?
Be gentle to yourself. Yes, isn't that something we woman all must learn to do? Whether it's generational or being a mother, somehow many of us were taught to put ourselves last. I know that as a product of the old time fear instilling catholic school, I somehow incorporated the thought that thinking of myself was selfish (going right to hell for that you know!), Only now in middle age and most certainly through this bc experience have I learned that self preservation does NOT translate into selfishness. This was truly a mid life crisis "aha" realization before being diagnosed. I guess the powers that be wanted to make sure I carry this knowledge within me forever. God knows now, this experience has made sure I will never forget it. Though I STILL have a hard time sitting back, feeling like crap and not feeling bad that everyone else is doing what needs to be done! Go figure. Guess I'm still learning after all.
God Bless you as well and may your good days multiply.
Ellen
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Susan- you hit the nail on the head! HER2 pos = chemo. I didn't even have the onco type test as there was no issue to resolve! Oh, I was so bummed! I have always had it in my head that I would/could never do chemo if I got cancer. Goes to show that one should never say never! As an cancer community "outsider" it was not based on anything other that the feeling that you just get sicker with the same dismal end result. The visual of no hair was just pity provoking and I never wanted to be subject to that. Well, here I am dealing with that very thing! But I'm doing it because I know now that it will not end dismally. It was found early and I am going along with the idea that once this is over, it will truly be OVER. Mets is NOT an option. And I can't even fathom how or if I could even deal with it.
You are fortunate not to have that pesky HER2..if only... So sorry you had such issues with Arimidex. I had not thought of se's from anything after chemo until I came on board here. Now, it seems to be the norm and I am going to research LONG and HARD before I give my body over to that stuff. It's so not fair to have to live like that!! Has anyone investigated alternative medicine as far as hormone positive breast cancer?
Ellen
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Ellen - I always assumed that cancer automatically meant chemo, so it has taken me awhile to adjust to the fact that no one considered me a candidate!
I even told my doctors that I knew it was because I was old and it didn't matter to them if I lived or died! Hmmmm, pity party for me! I can only hope that I'm not the only frightened woman that's spouted that out through her fears and tears.
I still have that teeny, tiny niggling thought that the 2 or 3% improvement I would have gained from it, might end up making the difference sometime down the road.
BUT, NO LOOKING BACK!!! I yelled that loudly to remind myself that I can't keep second guessing.
And, Kay - what a horrible thing for anyone to say, especially your trusted onco!! I guess living well is the best revenge, but I would want to know what the h*ll his intentions were to say something like that???
When I hear that kind of thing, I realize how truly fortunate I am to have been placed in the hands of the most wonderful professionals, from my gp and gyno, all the way through my whole cancer team. Hopefully, the rest of your providers are compassionale and professional.
It's sunny and not too ghastly cold - so this has to be a good day!! (Despite the fact my mother's favorite cat has once again peed on my computer.
I keep it covered , but never noticed the puddle on the plastic this morning, so the pee dripped all over the stand, carpet, me...Anyway, I love you all and am so happy to have this cozy place to come to! I've never had this many buds in my whole life and I feel truly blessed!! Cat pee and all!
Susan
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Samiam--Give yourself a year to get back to "normal." That's what my surgeon originally told me and he was right.
14 months after my first diagnosis & a lumpectomy, I got hit again and am back to square one. This time a double mast for me.
Kay--I feel for you.
Susan--blessed with cat pee--lol.
Our stories are so different and yet we fight the same beast. This is a great place to come with our fear and angst.
Maz
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Hi, Kay ~ Without having all the details, I'm going to take a slightly different view of what happened with your first onc and say -- thank goodness that he spoke up and said something that led you to drop him and find someone better! I mean, what if he'd never said that and treated you with that underlying attitude? I know his words were beyond hurtful, but perhaps he's lost patients with similar stats to yours or whatever caused him to say that. Who knows? I know I had an onc tell me that if I was his wife, he wouldn't recommend chemo for me. Long story, but when I dug deeper, I figured out that the chemo regimen he would have put me on included Adriamycin, which has a high risk of causing heart problems. So, even though his advice may not have been the best for my situation, it was great advice considering how it could have played out in his hands. I hope that makes sense.
The other thing that concerns me about suing anyone is that I think what we all need is more peace and less stress in our lives. I'm not saying you shouldn't proceed with a lawsuit if you truly believe it's the right thing to do. But I can't help but ask if the stress involved with that sort of action would really be good for your health in the long run? Just another way to look at it, and I also hope the blues you were experiencing yesterday have passed.
And Pat, can I ask you if you had an MRI prior to your surgery? And did you use a breast surgeon? I'm asking out of concern due to your multiple positive nodes after neoadjuvant chemo. I had a poor MRI early in my tx that led to a lumpectomy when I really needed (and eventually had) a mast, so I am probably way overly wary of the need for a good MRI, using a breast surgeon, and a 2nd opinion, especially if anything about a pathology makes our situations seem more complex than first believed.
Susan ~ Didn't I see somewhere that you had a very low OncoDX score? If so, I don't think you should even second guess your decision not to do chemo. Count yourself very fortunate to have been dx'd so early, and don't let that neglible 2% to 3% nag at you. I don't know too many women who would have chosen chemo if it wasn't strongly indicated!
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Deanna - That seems like sound advice for many of us - reduce the stress! I would agree, although, it is difficult sometimes to forgive and go on when someone has been a total *ss, like that onco.
Yes, my oncodx was 15. Thankfully. And, it proved all of my doctors were probably correct in not recommending chemo. Even right after my diag. mammo, my gyno told me I'd have a simple lump and rads and I'd be good to go!
So, I'll save the big guns for the next time!
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Oh, I totally agree, Susan! It's very difficult to let it go. But you can't sue someone (and win) for being an *ss or a "do-do head" (Kay's term). And, what he said might have been true. She might not have survived 4 rounds of chemo in his hands!
Like everyone else, I've occasionally dwelled on "wrongs" I've felt someone did to me -- being unfairly fired from a job years ago when the business I worked for was sold, being edged out of a committee chairmanship by some nasty back stabbing women. But then I realized that the only one continuing to suffer from the negative feelings I held onto was me. The person or do-do heads who did or said whatever hurt me probably never gave the situation a second thought. And, as far as forgiving goes... it took the great spiritual leader Oprah (LOL) to say something that finally helped me grasp something I'd been missing about forgiving. She said (paraphrasing here) that forgiving doesn't mean you say it was okay. Forgiving means that you come to a place where you accept the fact that it happened and that it can't be changed, so that you can let it go and move on. That definition of forgiveness has helped me tremendously.
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I had written a HUGE reply here and it WAS LOST!!!!! A true test today as i just hurt today and keep goin at tasks and know I should not!!!!! Have my first PT appt Thursday..Deanna, my PT had a mx herself and comes highly recommended as she only works with mx patients. I will ask her about the certification in lymphema etc. IS that what that pull or occassional shar needle pain above my elbow could be?? Sooo happy to hear your rads tx is done.. what a awesome time for you!!
REKoz.... me TOO!!! Never thought I WOULD do chemo either and now it is approaching!!Still have fluid in my back area and meet with my breast surgeon tomm etc. Not healed yet and I want to be strong for chemo part of this journey. Goin on 4 weeks post op and my body really hurts today.The Ambein is not helping and am looking at some melatonin tonight?@! i just want my normal sleep back?!!
Susan.. OH NO!!! Mr.Kitty has pee issues or is simply angry at you!!! Our pets, we love them and at times we want to scream!!!!
Wow Kay.. I thought I had a cold oncologist.. no way is that a way to be treated. You are one fighter and you keep it goin!!!YOU have been thru alot and thank goodness you know what your needs are and today you are an example for others!!!!
Pat634.. So glad to see you back and know what occurred for you. My diagnosis changed after surgery too. IT has been 4 weeks post surgery and chemo will start when i am healed more. You have been through alot and know we are here for you!
Well this post best go thru!!!! Such a great thread goin here!!! Love all of you and appreciate the good info even if one is called a "whore"!!!Yeah right. a typo.. whatever..lololol. Thanks for that laugh~!!!!!!!
Hugs,
Donna
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Susan- The next time? God forbid there's a next time. I know it happens but please, let's be positive shall we? You are early stage and your chances are great that you will not have to deal with this again. As I mentioned, this is my mantra. Sometimes there is truth to the saying that you are what you think. So honey, you are good to go!
Deanna-as always the voice of reason. I totally agree with the stress of a lawsuit does not have a place in our lives right now. I sometimes just react and then think! It's people like you that us "reactors" need to calm our emotions. YOU rock!
Ellen
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Ellen - you are right about negative thoughts! That darned negativity sometimes slips out unexpectedly!
Slap - slap! There, now I feel better!! Thanks!
Deanna - Oprah lol! I have a really serious, but equally profound Oprah story:
When my daughter was a Naval officer stationed at Guantanamo, she was attacked in her apartment by a man who had been stalking her for weeks. He told her he was there to rape and then kill her.
Melissa is a petite 5'4" - he was 6' tall. She put up a terrific fight (only getting a small cut on her cheek from his knife, along with all the bruises) before he gave up and ran out of the apartment(wearing a pair of her underpants.)
Anyway, everyone was so surprised that she was able to fight him off, and when asked how she knew what to do, she said she'd seen an Oprah program on self defense!! True story!!
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I did not tell all the story. I was part of an interdisciplinary cancer team. Our first visit of the day, 11/30/07, was the onc. I had been told by my surgeon that I was stage 1, lump less than 2 cm, only would need radiation. That is what I believed for 30 days (it took my HMO 30 days to get me into an onc -- an 1 1/2 hr drive). When the onc came in, he was nice enough. Granted I am NOT in the best physical shape and have some issues. He left the room and then returned with a completely different attitude -- a jerk. He proceeded to tell me that what I have is a very aggressive cancer, that I would not survive 4 rounds of chemo and went on and on .... I was shock with this news I received and the way I was spoken to. We have him on tape -- with his permission. For 30 days I thought that there would be no chemo .... and now I was at the mercy of a jerk. We left him and went to see the therapist, Kevin, (psychosocial). He told me that I had a wonderful chance of survival and that he thought that I would do well. I had shared with him and with the onc that I am a Chaplain for a non-profit Hospice. Kevin thought that I could not be in a better place -- I agreed -- lots of nurses, docs, social workers, bereavement ... no better loving place than this.
From there we went to see the rad onc and then accounting (joy).
My husband and I went to lunch after the ordeal was over. As we were eating my husband asked me if I noticed the Dr. Jekyl and Mr. Hyde attitude of the onc. Oh wow ... I thought that it was just me!!! So, we talked and went back to Kevin and explained how we felt and wondered why the onc would say this to me. He was puzzled ... could not believe it .... I think my husband did a playback of the wretched part (not sure). Anyway, Kevin went to see onc and the onc responded ... Good! I hoped that they would catch on to my attitude. She needs to quit her job with Hospice .... never a word about being sorry. Kevin, on the other hand said that he was sorry that I had experienced this. He expressed again that he thought that I was emotionally prepared for what was to come.
That was my first meltdown .... and every time I was in the dark shadow of the valley of death - I thought of jerk onc .... I would have fought regardless of what he said. I had felt that he was a shotgun delivering the bullet called death. He is an evil man ... and he teaches at a medical school .... his real name matches what he was to me.
Gotta get some sleep! I am praying about legal action only because I do not believe that this man should practice oncology if he plans to take away a person's hope. As a Chaplain, I never say anything that would take away a patient's hope .... even for healing. Perhaps this man would at least take another look at the way he treats patients or change HIS profession.
Love and blessings all!
Kay
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Kay - now we know the rest of the story! He must have missed the compassion part of his training. Probably went to the class on how to be a jerk instead. He should be outed. Who knows how many other patients he has abused?
Good night for sure! I'm usually in bed by 9!!
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My situation is different from yours, but its taken about 1 1/2 - 2 yrs to really feel like I have a handle on this..the medical part has been under control, great onc and team, for me its been more about the mental, emotional part, creating a new lifestyle/routine that has been the hard part. Yes... reducing stress and letting go of things we can't control is so important- save the energy for fighting the cancer and enjoying family, children, sunny days, puppies and kitties (even when they pee where they shouldn't) wild flowers whatever.
Susan, As I was reading posts, I saw your comment about cancer = chemo. Boy do I understand that. I have learned so much since my dx.
I was dx w/ stage 4 bc about 2 yrs ago (initial dx) and because I am er+/pr+, have been on hormonal therapy since the start. Have not had surgery, chemo or rads...saving all that for the time when this approach stops working. It is amazing what research has discovered about cancer, the different characteristics etc. and how they have been able to come up with different approaches.
It has taken me quite a while to wrap my head around cancer does not automatically mean chemo...its weird but even though I am at stage 4, I feel guilty (?) because I don't "have" to go thru chemo....my heart and prayers go out to everyone who is/has been affected by it. It's as if I have a better deal by taking AIs (even with the icky side effects), weird because no one has a good deal - the whole cancer thing is a bum deal.
Kay, so sorry that you had that experience... its hard enough to go thru all this with the best of docs. Glad you found another.
Hope all are well and today is a good day,
Elaine
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You are in inspiration to me. I was just diagnosed on Monday and own my own bus out of the home. I know my health comes first but I am so afriad my business will suffer. It is good to know it is possible to go to work after a few weeks.
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I decided I needed a good chuckle, so I added my grandbaby with his binkie on his head! It's hard to be glum when I see the twinkle in his eye!
Susan
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You are an inspiration to me. I was diagnosed on Monday. I know my health comes first but I own my own business out of the house and I am afraid it will suffer greatly. It is good to know that it is possible tonot be down for 3 weeks or more.
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lyeagher - many of us worked the best we could through the treatment. Soem did more than others, lots of factors come into this.
The main thing, I think, is to do what you can do, and not compare yourself to anyone else. Your recovery will depend on how you treat yourself - so treat yourself the way you would treat your best friend. It's hard to give yourself permission to put your first, but for awhile you'll need to.
It won't be forever, and you may recover quicker if you don't wear yourself down trying to keep everything up.
Good luck with next part of the journey.
Susan
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Awwww Susan.. your grandchild is adorable and would make anyone smile!!!!
Today i had my first PT appt and what a difference it made!!! was pretty stuck and wants to see me again tommorrow!! Chemo is still not assigned until I have no fluid retained!
Lyeagher. try to get this book , it may help you in all that you are goin thru with work and such. it is not the title of doin anything but doin the journey and it has some awesome parts that helped me and accepting the downtime etc..Treatable and Beatable by Carolyn Gross. The book was gift for me and thought i did not want to read about how a woman healed cancer without surgery, i quickly found it is not all about that. Just a suggestion!
Healing thoughts,
Donna
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Donna - thanks! Hope the PT does the trick.
Elaine - you are my role model!!
Susan
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Susan you are so right.
Everyone's experience is different, do not compare yourself to others because we all react differently to meds, stress, family support is different, WE are different, jobs are different, need to work is different and so on.
This is a time to really prioritize for work AND home. I don't know what kind of business/job you have but put off what you can, keep basics going. When people offer to help say YES (I know its easier said than done but well worth it), let them help with food shopping, basic cleaning (oh yeah- lower your standards), laundry (even if you do under garments yourself) whatever. You want to spend your time healing and saving your energy for the important things and laundry is not it.
Do you know what treatment is yet? You'll learn to plan around treatments, not everyone has horrible side effects, some had a pretty easy time- so why not you?
Hang in there ladies. Keep you eye on the prize, remember why you are doing this--children, grandchildren, husbands, significant others, puppies, kitties, yourself, whoever. Take a deep breathe, one step at a time, know that you are never alone. You can and will get thru this, you will find an inner strength you never knew you had!
I pray you find a quiet peaceful healing place and remember that this too shall pass.
Sweet dreams, Elaine
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