Team ILC Warriors
Comments
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Happy to see that the new rads folks are off to a good start. :-) It will go by quickly!
About the "brave" and "inspirational" comments, I try to explain to people that it would inspirational if I took up meditation or tai chi or did something that took me way out of my comfort zone and supported my treatment but the reality is that I just get up everyday and as much as I can of what I've always done. Nothing really earth shattering about that.0 -
lily- thanks for your reply, I just checked here and was happy to see it!
I need to make appt with MO for my mom I guess... We are so confused that we saw the MO in the 'multidisciplinary clinic' who apparently assumed she would be my mom's MO but yet, the MO did NOT mention Hormone Therapy at all, so I brought it up. She didn't Rx anything. I am one brought up Bone Density/Oncotype testing. Not the MO. I did bring up the bone scan and MO said why?
We thought at end of "clinic" that someone would come in and give us Rx etc and then the RO came in to say ok, yes, just radiation needed at this time, and honestly----- we had been there for nearly 4 HOURS only seeing the 2oncs (RO & MO) which was maybe 30min of that whole time! we were tired and ready to leave and we left w/o remembering to ask about the RX for the Hormone Therapy etc.
Because of this, I just really don't care to have this MO as Mom's MO.
My Mom is upset because she doesn't have a MO onboard, or that she might be stuck with this MO and YES she wants her Hormone Therapy started. like yesterday!!
*sigh*
I do a lot of that lately.
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on another note, I saw something about "lobulita" which made me think of lolita? idk. isn't lolita about sex? idk!! made me laugh. i mentioned it to my mom. lobulita. she thought of the lolita thingy too. wasn't it a movie?
anyhow, my thought is that if lobulita works for a gal? let it work for her and support her in her choices. if screaming at the top of one's head works? well go to it, just ummm plz make sure you're alone? I know it would disturb me, but I'd encourage you to do it if it worked, and would even tolerate it to a point.... I feel people should relax and whatever works for one person to relieve stress/anxiety etc just let it be, we are all so different.
I personally have a huge amount of humor that I insert quite often into life, and it can be dark humor or just plain weird, or very subtle... but it is there. It is how I cope.
I think all people with any type of cancer or even disease in general, they are all warriors fighting a battle... No one chose it, but here it is. Do whatever you can to fight it, whatever puts you in a better physical and emotional/mental state of wellbeing--- then do it. We are all individuals.
Hugs to all
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Lolita is a novel actually, by the late, great and wonderful Vladimir Nabokov. It was made into a movie twice, by Kubrick in 1962, starring James Mason, and by Adrian Lyne in 1997, starring Jeremy Irons.
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I prefer guerritas as life does feel like a battle now...
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See? That is how individual this all is. I don't see it as a battle.....I am not fighting anything. I am just dealing as gracefully as I can with what life throws my way.
I like to think that I am too busy living each day to waste time fighting. :-)
If life IS a battle......it is one we are destined to lose.0 -
Ah, Lolita with James Mason...a classic. Humbert Humbert--what a hapless, hopeless character
Some are uncomfortable with cancer terms related to battles and wars...some are uncomfortable with other terms. I like to think of myself as a warrior. Warriors aren't always in battle, but they have been trained to fight and can fight when necessary. I think it's one reason I'm keeping my ordinarily long hair short post chemo (BTW I finished chemo one year to the day today!!!). Short hair now feels right--like I'm "lighter", can see better, and besides enemies can't grab my hair and wrest me to the ground
It's only psychological, but that's a strong image for me to hang on to.Claire
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Oh, just talked to the doc and both CA 125 and biopsy were negative. Something to celebrate! Thanks for everyone's concern.
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I mean i am finding it hard to really live rather than exist ..... Not that i am fighting life......i think i am too sensitive to be on here right now
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kestrel- GREAT news
lily- ahhhh sometimes a break is good, but i don't see you as being too sensitive, of course, i don't know you, but there is certainly nothing wrong with sensitivity!! is there? i suppose i would say my mom is sensitive also, and it shows as anxiety. but also fear of unknown shows as anxiety and increased sensitivity. idk. i don't make a lot of sense maybe.
by warrior~ i don't mean FIGHTING as in fight, but yes, being prepared for xyz, being informed of xyz, understanding xyz, and well Yes- triumphing over xyz--- anything positive or proactive- any treatment etc, that's all a form of "fighting" cancer. no matter what word you give it. battling? fighting? winning over? handling it? beating? it all sorta in a sense means same thing right? just maybe a different perspective or approach? but same thing with the same hoped for outcome. very generalized.
and i strongly believe in quality vs quantity. and taking each day as it comes, living in the moment. living life vs dying...
my otherwise very healthy elderly Uncle has a rather rare form of blood cancer, and at time of Dx, his prognosis was maybe 6mos... he left that appt shaken of course, but knowing that "i may die tomorrow, but today i'm going to live, i'm going to keep living life and doing what i've been doing (remember he was uber healthy) and not stop living- just because i am dying" WELL that was 3years ago!
he began very aggressive basically nonstop chemo immediately, and did so for 2years, the Onc was amazed he was alive, not quite sure WHY or how he was alive, but after 2years he had to stop the chemo b/c it destroyed his heart- he now has aortic stenosis- not a candidate for surgery d/t age, also, insurance refuses to pay d/t age... so for last 1 year(3yrs total), he has been living life just as he did before the cancer- no changes except yes he's slower d/t the heart not getting the oxygen to the brain as well- but he's living. And the onc's continue to not understand why w/o treatment esp he is alive. the point of this is:::: LIVE your life.
*he believes this is really the only reason he IS alive. he just focuses on positive living.
Docs can't "measure" and medicine being based on science, what can't be measured etc puzzles many... but facts are facts, and his drs are human enough to understand and believe on the whole positive state of mind theory etcetcetc
(don't holler at me that i may have generalized and simplified plz
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I believe in that too BUT i don't seem to be able to really live and enjoy myself - i feel guilty if i drink wine or beer or eat chocolate, i hurt all the time somewhere so much so i am thinking of stopping femara.......and i am tired all the time...
A tearful evening0 -
Athena is a great name
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Chasing dreams, I'm not starting tamoxifen until after I finish my rads. That's what was explained to me by my BS, MO, and RO. For me, it was surgery first, then radiation, and then tamoxifen. Chemo was questionable until my oncotype result came back. Good luck! If you're both uncomfortable with this MO, by all means, find another one you like. Your mom and you deserve that. Hugs!
Lily, sending you hugs!
Gail, great news! I'm happy dancing with you!0 -
Lily, a great big virtual hug headed your way!
I never said that getting to this point was easy, nor that there weren't MANY tearful days along the way.
I also felt guilty for every real, or imagined, lapse in the "beat cancer quest".....sometimes still do. But then it occurred to me that I don't have the power to give myself or cure myself of cancer. What I do have the power to do is determine how I will approach each day. Finally accepting that tomorrow actually could be my last day made it important to make sure I spend it well. Not irresponsibly so, but not wracked with fear and guilt.
This stuff takes us to some pretty dark and scary places. All of us. I just try my best not to stay there long.
Hugs to you and all of us here.
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Thank you - Glad you are both here ...
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Oh Lily! Been right where you are so many times! Not too long ago, the diagnosis finally hit me, I was sad and angry, probably because I wasn't in survival mode anymore. Don't give up on the Femera...at least try another AI that might be kinder to you. I'm on Arimidex (2yrs) and right when I thought I can't take the pain anymore, it started to subside a little (and this was just recently!). I still have the aches and pains, but for some reason they are not at the forefront anymore. Not sure if it was time or just got used it. It might be the same for the Femera for you. You may just need time. Sending virtual hugs!
Kestrelgurl-Yay on your results!!!0 -
PS...I haven't given up chocolate and have limited the wine to 2 or 3 times a month, I still feel guilty too, but if I can't have chocolate is life really worth living?
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Claire, Thanks for sharing with us about your NO visit.
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Claire, thanks for all the great info! I need to clean up my diet even more.
Kestrelgurl, I am so glad your CA125 and the biopsy were negative!
I see that I am not the only one that worries about eating or drinking things that might promote cancer. I have a love/hate relationship with sugar. On one hand, I love sweets. My two biggest addictions are chocolate and Dr. Pepper. On the other hand, I have read so much about the evils of sugar, I want to stay away from it completely. I have landed somewhere in the middle. I have a small amount of chocolate (usually organic dark chocolate) every day. I also still drink a small glass of DP once and awhile. Occasionally, I am weak and eat something really bad. Bakery fresh cookies. That usually results in a huge wave of guilt. It is hard to find that balance between doing everything we can to live a long life and enjoying life while we are here.
I am about 6 weeks away from my 2-year check ups with my oncologist and my breast surgeon. Two years of Tamoxifen down, three to go. I hope my sanity can remain intact for 3 more years. Lol!
I went to the gym again today. I have found that when I feel like I cannot stand one more minute on the treadmill or elliptical I start thinking F-U cancer!! And F-U tamoxifen! It helps me push through it. I don't ever swear but cancer really does deserve the F word.
I hope everyone is having a great week.
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Kestrelgurl- Excellant news today!!!
Today was day 3 of Rads, boob is swollen. Day 3 but like day 6 due to double dosing. I had to take a nap this afternoon hit me out of nowhere. Nipple is really tender. Cant imagine a week from today, something tells me I am not going to be real happy. But its a small price to pay if it keeps it away. Really wanted to get out there and take a walk, 27 degrees and snow storm.. where is Spring??
Galsal- I like Athena!
Goodnight all, pleasant dreams.
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Hi again everybody,
I got some more information today so I'll add it to my siggy. Looks like my receptors are postivie for everything. Even the Her2 was+, but I was told tha the "FISH" was unamplified... so likely no herceptin. Has anyone else had this kind of "unamplified" result?
I'm also in the 90%+ range for estrogen and progesterone which scares me. Then again I'm terrified of just about everything these days.
MRI tomorrow and appt. with the geneticist on Friday.
This blows...
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I have a piece of 70% chocolate most days. It is pretty much the only sweet I eat. Alcohol may be bad, but I refuse to give it up completely. I stick to a maximum of 3 glasses of wine per week. Most weeks I only have 2 glasses. Once in a while, I have more.
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Athena - the Goddess of War. Used to be the symbol used for the WACs before Women became Soldiers. As one said on another site, Onco-Warriors.
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Good Morning, Lobulitas.....Warriors.....Athenas.....Goddesses.....I don't care what we call ourselves, just glad we are here for each other! :-)
You know, in the triathlon world, lots of races have an Athena division for larger sized women. In California races the weight to qualify to compete in it was 135 lbs! Only in the land of beautiful people! Sheesh!
DH and I are working on a plan to cope with his layoff. Determined to keep a positive outlook and believe that this is going to turn out to be a good thing for us.
Although I won't go so far as to say I am glad I got cancer, it has made me change my outlook, slow down and try to find something enjoyable in every day.
And that is a very good thing!
Wishing all my ILC gals at least one happy moment today! :-)0 -
Lily, I was having a terrible time on Arimedex. I was on it for 14 months and I ached everywhere and was hobbling around like a 90 year old woman (I'm 55). My brain was in trouble too, couldn't remember anything, and was having trouble just functioning. It was like having chemo brain. I actually thought I'd have to give up my job as I was struggling and making lots of mistakes. I wasn't terribly happy about anything either.
I switched to Aromasin, and now life is wonderful. I still have some aches and pains, but I am 55 lol. My brain has returned to normal - I've had a promotion at work and I'm happier than I have been in a long time.
I've been on Aromasin now for eight months.
So - if Femera doesn't agree with you, you can try Arimidex or Aromasin, they may suit your body better. I had decided that if I had the same reactions from Aromasin that I had from Arimidex I would stop taking any AI's as QOL was more important to me. I'm so glad I found something that agrees with me. I could quite happily take Aromasin for ten years if I had to.
Some women have awful problems on Aromasin, and find Arimidex suits them. So it's worth trying something new. ((((hugs)))) to you
About wine! I used to enjoy a glass or two occassionally, but since chemo I've lost the taste for it completely, haven't had more than one sip in over two years lol. Now if I could say the same about chocolate, I'd be a much slimmer woman :-)
Trish0 -
Thanks Trish, I was toldf letrozole is the best for lobular but if it carries on like this I will ask to change I think as even my fingers hurt typing!!! And I live in a warm dry climate.........
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This seems to show we are at much high er risk as our distant tumour cells are commonly twice as many as IDC
http://www.ncbi.nlm.nih.gov/pubmed/224827640 -
Lily.. please dont be offended but you can drive yourself crazy looking at the research. This is one study and I cant tell without seeing the full study if it was a good one. If the cancer is going to reoccur it will, and no amount of worrying is going to change that. Focus on what you can control and enjoy life in the moment.
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Amen to that!
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Okay ladies, I am taking you all with me for my lumbar puncture tomorrow, my pocket isnt big enough so I am going to carry you in my heart. I am calm as of now, know I wont get results to next week, also know the odds are in my favor of no mets. Looking forward to putting this worry behind me. I have rads and then 3 hours later the procedure, what a fun Friday!! Today I have a swollen pink boob and its starting to itch underneath so I guess the zapping is truly doing its job, I hope its worth it. Hope Amy is doing okay with hers also.
Have a wonderful night and Thank you all for your love and support.
Kim xo
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Lemon - all the best, I'll certainly be with you in spirit xoxox
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