January 2014 Surgery Sisters
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Saw my PS and MO yesterday. The PS said no more fills :-( He thinks the scar is stretching too much and may open if we push it any further. I'm only at 475cc and will live with it this way until reconstructive surgery a year from now. No filling allowed after rads start next week.
The MO talked a lot about my weird diagnosis and then started me on herceptin an hour later. He seems to think that it's all good news because it has a lower reoccurrence rate but I sure didn't want to even set foot in the infusion center ever again. I had such a tough time with chemo. My lab work still isn't normal but it was better than a month ago. We'll be transferring the rest of the treatments to a local onc. I also hate the thought of being tied down for a whole year. No repeat PET scan unless I have other symptoms.
I was supposed to have my first rads apt today but we got a foot of snow overnight. It's still snowing and no plow (or car) has come down my road yet. Almost all of WV is shut down. I think I'm going to have to postpone. I just want to get this started so it can get over sometime.
I'm one of the older (62), bald, infirm (bad hip) patients but my dad lived to 94 and my grandmother until 96 so I think I still have 30 years ahead of me and want to get out and enjoy it!
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Char and Grace (and anyone else).... I apologize. I really put my foot in my mouth. I didn't mean to offend anyone or hurt anyone's feelings. I know sick people of all ages and didn't mean to sound negative toward those that are older. Believe me, I'm bald (and gray when i have hair... LOL) and have been feeble many times along this journey.
What's negative to me is how out of place I feel when I go to my cancer center. It's not that I wish cancer on young people, but it's strange and makes me feel really awkward when I never see someone even remotely close to my age there. Throughout all of my tests, chemo, and doctors appointments, I'm the youngest patient I've ever seen there. Makes me feel like "what am I doing here?"
I'm truly sorry for the way I said what I did. {{Hugs}}. This is ALL upsetting enough without me speaking without thinking!
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Hey girls! As I read your posts I see that sleep seems to be a problem for us all. It really sux getting up in the morning....starting your day feeling so tired. Not sure what it is for me....I'm not thinking bad thoughts....not in too much pain. But seems when I hit the pillow I'm wide awake! My doc prescribed a new sleep med for me yesterday. I didn't try it yet. Michelle like you said...another friggin pill. When I read the info that came with it...said it was used for mental disorders (psychosis). Freaked me out! I didn't think I was mental!!! I called the pharmacist and she said at a low dose it's common for insomnia. Maybe tonight!
My PS was very upsetting for me. The first visit I left crying. She had nothing positive to say and left me feeling that the recon might not work. I went to see her admin right after to fill out some paperwork....and kinda vented my displeasure with the PS. Funny thing....she has been a real sweetie ever since. LOL
I loved my MO and RO and my surgeon. They were all wonderful and compassionate.
My boyfriend went to get my prescription yesterday and came home with a book for me. Chicken Soup for the Soul....Hope and Healing for your BC Journey. I almost cried that he thought to get it for me. Anyway...I love it. Very inspirational stories. I'm almost done my treatments and it's still great! Would be even better for the newly DX. Just thought I'd mention it.
Laurie
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Hey Laurie:
I walked away from my first PS meeting upset as well. When I discussed with my BS, he said that most PS are very into how the result is - they feel they are artists in a way and want perfection. They will tell you every worst case scenario. Don't let that get you down. My appts. since have been much better.
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Can anyone tell me when the strength and courage kick in?? I am struggling and feel like the roller coaster ride never stops!!!! I cannot possibly have anymore tears in my body!!!
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i take two 3mg melatonins a night
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Dtkd...thanks, but as most days have worked for me a good nights sleep and another day makes things better. Just trying to remember always that alot of "sisters" are dealing with worse. Right now I am looking outside at blowing snow with almost a foot on the ground already. So ready for spring and new beginnings!
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2boys_mom
Strength? Courage? Those are just words. They don't mean much to me. Yep, you said it. It's a roller coaster ride. All you can do is hang on!
I can only speak for myself. From the beginning, everyone involved in my care stressed over and over that it was EARLY STAGE and that there were many positive things about my pathology - for example, I had ER/PR+ which responds well to hormonal therapy. Also, my Oncotype test was low for recurrence (10/100). So I hung on to those things - esp. the Onco report, for hope. I didn't cry for a long time. I was mostly numb and just determined, and preoccupied, and IDK, just very busy trying to learn all I could. Tears for me didn't come until much later when I had some bumps in the road but even then the tears would come at the oddest moments. Surprisingly, after the surgery I felt worse when I should have felt better? But I've heard it's common for women to feel a great deal of anxiety after surgery / treatment is over. So....just know that with each step along the way all this - stuff - takes time to sink in and it takes times to process emotionally. I think it's okay to cry, or vent, or scream or whatever - for awhile. When you're really upset or anxious, try distracting yourself - I watched movies during those times when I thought I go crazy waiting for test results, or trying to absorb bad news. But make sure the movies are comedies or upbeat feel good chick flicks!
Remember.....You have many good things going for you - according to your signature, you are EARLY STAGE (stage 1!) and have ER/PR+ cancer which in just the last few years, the medical community has discovered many new drugs and new ways to treat. Plus you have 0 nodes. Has that changed? If not, that is awesome!!!! You should have an excellent prognosis.
Hope this helps.
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lighthouselady: what a nice post. Thank you for being so "PC". We are all in this BC boat together no matter who we are or what stage or what treatment etc. hold tigh to faith girls!!!
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Michelle, Really, I know, we ALL know you didn't mean anything derogatory, about feeling out of place at the cancer center, holy cow, I don't feel in place anywhere anymore. I have no patience for stupid, rude, loud , having to be PC , BC brain, not smoking...I so want to still smoke, ummm what else...one day here it is hot and now it going to be freaking cold again, do I take the damn AI or not, can I walk away from BC until it comes back, 95% it won't but will I be in the 5-10%...arrrrrrgh!.
2boysmom, Yeah! courage, peace, acceptance, happy, elusive for me too! My brother sent me a card at the beginning of this crappy journey: On the front it said, FIGHTER, FIERCE, FANTASTIC. On the inside...I'VE GOT A WHOLE DIFFERENT "F" WORD FOR CANCER.
Feel how you feel! Cry, whatever it takes. Personally, my DH and I on the week end, have a few drinks, put in our RUSH, Tom Petty, Incubus...DVD"S and blast that music loud, I sing (rotten voice) DH winces, he's a musician (good voice) and dance. I also go over to the stage IV thread and read. Those ladies are awesome.
I guess we have to accept that our lives will never be the same. But from years of experience, the fear, and pain, will lessen. Hugs.
Laurie...yay for great and thoughtful partners.
I seem to fall asleep just fine and stay asleep until I have to get up to pee...diuretic in my BP medicine. I'll even lay there having to go and try to ignore it....but if I don't get up then I don't get to sleep in....weighing what is more important at 3am...lol. My problem is really intense, weird dreams...I am exhausted from them.
Get this...I have been doing extensive research on AI's. Came across this study about losing weight for BC ladies. K, I am 5'6" and weigh 140. I wear a size 8. Not bad....However I have gained 15 (happy) pounds over the past non working 3 years. I used to be very toned and had lots of energy. Now I am thick around my middle and floppy every where else. BP pills killed that. NOW to the point. I am starting to exercise to lose some weight....the dang BC Synposium (sp) repot says it could be detrimental to my prognosis to lose weight.....WHAT!
Apperntly to change anything major in one's body can hurt you...lol so I can stay a couch potato and eat my loaded baked potato skins and all is well...BRAVO!
Running on again,
love and warm hugs to all,
peace
Eve
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Just read what I just wrote...SEE! I can't spell anymore sigh.
Eve
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Mmmmm...baked potato skins! LOL
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with a micro brew
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I think you are ALL amazing women, and your posts..typo's irreverent, PC, non-PC, goofy, angry or sad, lift me up, put things in perspective and help in so many ways. It's all real and there is no other safe place for this. Michelle, I totally got what you were saying. I could barely breathe when I had to walk into the Cancer Center where my MO's offices and the PET/CT scan's were, and just walking past the chemo door scared the crap out of me, because at the time, I wasn't sure whether I would need to walk through that door at some point. I can only imagine how it must be if you see no one that you feel you can connect with.
By the way - I ordered a new bra on Amazon that I think is helping me with the burning. It's a Marina model B-3840-H compression bra with adjustable hook and eye settings in front and at the shoulders. Because I'm almost 5'9", I need longer straps...the surgical bra they sent me home with and the other one I ordered online were basically in my armpits, which was ridiculously uncomfortable. This one is great, but they run small. I ordered the medium (34-36), first because I am a 34 (DD, now A, aiming for a C), but it was crazy tight, and had to exchange it for a large, which is perfect on the tightest setting.
Eve - I hear you on the weight gain. I'm up about 8 lbs since my diagnosis and nearly 4 weeks of sitting around when I was used to training almost daily isn't going to help. I'm just hoping my PS farms a good portion of this muffin-top, and that Arimidex doesn't turn me into a fat lady with a beard! Hah!
BC101 - thank you for your post. It is exactly how I have been feeling. People tell me daily how brave I am. I say thank you, because it's the polite response, but inside I'm thinking - hell no! I'm not brave! Brave is seeing a house on fire and running in to save a kid. I certainly didn't choose to fight this battle, and if thought I could run screaming from this, I would put on the track shoes right now! I had no choice but to chose how I wanted to fight, so right or wrong, I decided to punch the BC beast in the face hard, grab hold of the horns, ride it out, and like all of you, hope that it will be enough. The other thing I feel is lucky...like I won the lottery lucky. With a mass as small as mine, and so close to the ribcage it didn't show on mammogram, I'm lucky that it was found on physical exam. In another year, I would have had a completely different battle.
I'm thinking that I will turn a corner soon...could just be that I got to shower...remember when that wasn't such a luxury? The hematoma is mostly gone, but my guess is that this side will just be sort of ugly until the exchange surgery, which is fine. I won't be posing for Playboy any time soon.
Love and hugs to all of you!
Diane.
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Oh Diane,
Love the Playboy bit. LOL
May I ask, because I am looking at AI's also...why are you going to take it. I will be 58, 03/17. My dx is similar to yours. Just wondering because I am struggling with the thought of SE's verses advantages of taking an AI.
hugs
Eve
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wow! just saw your pic, is everyone beautiful here...so far I would say uh! yes!!! Michelle, Laurie, Diane....BEAUTIFUL, beautiful women in a THOUSAND ways and more.
love and hugs
peace
Eve
when I figure out how to post a pic I will....kinda duh....I tried but my pics are to big..hate hate win 8
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Eve....I love you! You guys ALL make me feel good!
Laurie
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DITTO Laurie DITTO!!!!
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Laurie - I'm the same way. I'm so tired and yet when I get in bed I'm wide awake. If you try the new med I hope it works! I love the Chicken Soup books. I've read several of them, but not that one. I'll have to look for it.
2-boys-mom - You are still so new on this journey. It does get better. None of it is fun, and we all still have our bad days, but I can say 6 months after diagnosis and having been through 8 chemo treatments and surgery that I feel much stronger. Maybe not physically....LOL But I'm able to stay positive for the most part. {{hugs}} bc101 had great advice!
Aviva - Thanks for the info on melatonin.
Eve - Your post made me laugh, but it's true. Something that we were told was good for us years ago is now bad, this causes cancer but it didn't used to, etc. So much information and it's not always a good thing, especially when it contradicts what we are told or think is best.
Diane - I'm with you. So many people tell me how strong I am, how much of an inspiration I am, etc. I don't feel it. I'm just taking each day as it comes and trying to be as positive as I can. Who wants to wallow in how sucky it is every single day? And like you said, we didn't choose this fight, but if we don't fight, we die, so what choice is there?
Saw my PS again today & got another 50ml fill. Up to 200... really don't see how I could go to 500 (what my TEs will hold). That will be too big for me I think. Had a session with my lymphadema therapist, too. She spent the entire hour working on and massaging the cording under my arm. It hurt so bad but felt so good. I'll go back to both of them same time next week. I'm really sore tonight.... I feel some pressure from my fill and definitely feeling the pain from her massage, so I see pain meds in my future tonight.
I didn't get to see my friend, though. Disappointed, but she woke up during the night really sick so she definitely wasn't up for a visit. Since I have to go back next Thursday hopefully we can try then. I really don't talk to her all that often now as I'm sure her focus is her family, so I don't know if she has weeks or months left. All I know is she's pretty bad off.
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I am still up. watching the Olympics.
Was trying to go to bed....My DH and my puppy are all snuggled up together....lol so cute...what to do..what to do.
love
Eve
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The men's skating program tonight has been awesome!! Too bad for Plusenko - would have loved to see him skate,
but yay for the USA skating to Prince!0 -
Hi Eve: You are so sweet! Lately, I don't feel beautiful, but since I get to keep my hair, I'm not complaining. I put up the picture because I enjoy seeing Michelle's smiling face and picked one that I thought might perk someone else up. It is 3 years old, but my sisters and I (2 younger) were celebrating my Mom's birthday with a back yard BBQ in August. What you can't see if the giant margarita in my hand! Such a fun day!
I was 54 on Jan 6, and am taking the AI's because my MO is recommending them, and I trust her. She came frient-tested and recommended by 3 doctors that I respect. Ideally, she wants me on them 10 years, but at least 5. I think I can handle that if the SE's aren't too bad. I went through menopause at 50, so have already dealt with many of the usual SE's. I'm starting with low blood pressure, low cholesterol and great bone density (thanks to my martial arts), so have some "wiggle room". If the Arimidex doesn't work for me, she said there are 3 other drugs we can try. I checked out the Arimidex discussion group and it seems like some people do well on one, and not on another, but also a lot of the ladies with SE's aren't really sure if they are from the chemo or the AI's. At the end of the day, I just want to know that I'm doing everything I can to stick around and be there for my son, so I'm giving it a shot. Don't know if you are still up (it's only 8:30 here), but hope this helps.
Michelle: I'm so sorry you missed seeing your friend, but glad the LT was able to help you with your cording issues.
I picked up my son and took him to dinner, then to the school for his 5th grade science fair...my first real outing amongst lots of people. Only a few of the teachers, the principal, select parents, and my son's closest friends know what I'm going through, so I had on a raincoat and the big scarf to cover up my chest and give the illusion of normal. It was fun to see all the kids all excited, but it was EXHAUSTING and for some reason my back is killing me, in addition to the usual "someone ripped off my skin and put it back thinking I wouldn't notice" pain. Okay, enough whining. Things will look better in the a.m.
Sweet dreams ladies!
Diane.
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Oh, and Laurie...I LOVE the a picture of you fishing!
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Its now 6am (woke at 5am) here in freezing Northern Ontario. I couldn't sleep anymore.
Heeeellllllo anyone out there?? lol
Laurie
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thanks bc101 and lighthouse lady ! I have a wonderful support system in my hubby! I just wanted to vent a little! I just get upset, like the rest of you, I did not pick this journey! Yes, it absolutely sucks!!!! I just want to know life can somewhat get back to "normal"! I have two fabulous boys and hate more than anything taking them on this journey with me!!!!!
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Finally was able to put my picture up. yay!
TTYL
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Happy 1st birthday Kiku. She keeps me smiling and is a good listener when I am down.
HAPPY VALENTINE'S DAY
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What's the new med, Laurie? I had problems falling asleep last night and ended up taking Tylenol PM. It seemed to help, but next time I'm going to try Melatonin.
Wow, maybe I should put my pic up, too! You all look so nice in the warm climates! We're still surrounded by snow and ice here.
Just thought I'd put in my two cents on the AI's. I started my journey last June with AIs as treatment upfront before surgery. My biopsy and MRI showed I had a large tumor (5cm), and it was 51% ER/PR+. I was post menopausal and had been for many years, so my BS at the time recommended taking an AI to try and shrink the tumor before doing a lumpectomy. Right away he ordered the Oncotype, which came in as low risk, so that was the tipping point to do hormonal therapy vs. chemo. I thought why not give it a try. Gutsy choice, I know, but I trusted my doc. First they put me on Arimidex. The first ultrasound showed that the tumor was shrinking and the next month's showed it was shrinking dramatically. However, the joint pain was crippling, so they switched me to Aromasin. The pain went away in a few weeks. I have had no side effects at all that I can attribute to this one. We did the lumpectomy after 3 months when the shrinking hit a plateau.
The lumpectomy had dirty margins and the pathology showed that the tumor had shrunk, but in a swiss cheese effect. My BS did a re-excision, but the remaining tumor was too elusive. My BS just could not get clean margins. Problem is, they couldn't even find anything no matter how they imaged it, so I decided to do a BMX.
The key here for you guys taking or considering AIs is this: when they looked at what was left of my tumor after surgery, it showed that it was either dead or dying. The AI's kicked it's butt BIG TIME!!!!!! These drugs work! I wouldn't hesitate to try it -- if you are the right candidate, that is. I say GO FOR IT.
As far as I know, I will be on Aromasin for at least five years.
Have a great day everyone!
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Hope you all have a Happy Valentine's Day!
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Hey LHL...I am average for bc i think, early 50s, but every time I go to the Cancer Institute Radiohead begins playing in my head....(from "Creep)..I DON'T BELONG HERE....
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