Why was I stronger DURING treatment than I am now?
Comments
-
Hello Friends,
My mammo yesterday appears fine. My heart was in my mouth, ran out before they could report different. I went for a sight test too and the optician asked if I have ever had steroids, She told me my right lens was 'hazy' ie pre pre cataract and this was a result of steroids taken with chemotherapy.... as I am too young to get them otherwise. Well. I never knew that could happen.
Seeing the plastics team this afternoon and now have my youngest at home as he appears to be having some kind of crisis around college.
Julieho, I sincerely hope we can all get to a better place, just some peace of mind would be very welcome. Happy belated birthday, mine next month and I willl be 55. Metoo14 It is nice to know you had a good day, shows us all it is possible.
It's Friday
x
0 -
wintersocks
Yes steroids will give you cataracts. I was 54 when I has cataract surgery. No regrets. They started to develop when I in my 20's. It is such a simple procedure anymore. I was back to work the next day. Honestly if it wouldn't have been for the drugs that they give you for the surgery I would have returned t work the same day. I had no restrictions except no driving from the anesthesia.
0 -
Winter, I'm glad your mammo was clear. I too have the beginnings of cataracts, but had them before chemo. I can't remember how old I was when the optometrist first saw them. My early 50s, I think. They seem to run in my family, but aren't causing me any issues yet. What did the plastic surgeon say? I hope your son gets things figured out and can go back to school.
0 -
Hope you had a great birthday me too!
0 -
I am so depressed as I have had pneumonia since October. I am scheduled for third CT scan on Monday. I was also diagnosed last April with Cushings due tumor on adrenal gland, which was removed in May. I just can't return to normal? I am so tired with all joints aching again.
You have all shared your love of animals....without my Bella (my precious dog), I would not have any happiness.
No one knows how hopeless I feel...everyone says: You look great...but really my insides are ugly.
If not for you all, I would never vent or disclose.
💜🐾
0 -
Lili RI - I had chest infection and then pneumonia for a long time in 2015, several months, in the end only an inhaler that relaxes the muscles arund the lung helped me, it was caused by rads not allowing one lung to move normally. I got very down too - Inhaler is called Ultibro BREEZHALER, made by Novartis, Indacaterol and glicopirronio.......
Hope this helps you as it saps your spirit not being able to breathe.......xx
0 -
Back from vacation and to reality. Tomorrow starts an insane week ...family Dr, MO, biopsy and MRI. 3 different hospitals in 4 days plus somehow I need to find time to work. DH is not being what I need right now. Someone said this is my new "normal"... But it isn't. These appointments are beyond normal and I'm tired of them and trying to keep everyone else up. I really just want to hibernate this winter away. I'm listening to it freeze rain outside and so wishing I was back in Costa Rica...Hugs to all
0 -
Lily: Thank you so much! I will speak with Dr. this week. There is fluid in my right (radiated) lung. It is really affecting my ability to function day-to-day! Thank you for responding! Lis
0 -
BosumBlues...Thank you :-). I'm feeling beyond frustrated and work and DH are stressing me out on top of everything. I'm hoping the biopsy this week goes ok. It is another stereotactic biopsy...aka "the sewing machine". The one I did last year was freaking awful. No freezing as it dilutes the sample area. Kind of barbaric....ugh!!
0 -
MeToo14- I hope your Birthday was enjoyable. I am glad to hear you broke out of your depression, that seems to be something many of us keep struggling with.
2tabbies - I think I expected my foobs to be like what a person sees on non-breast cancer folks who just get implants. Instead, I have to remember it is reconstruction...not enhancement. My plastics guy was very clear that the goal was to look good in clothes. I maybe should have took that more to heart. I know I am early on...only 1 month out from exchange surgery, but I do not love how I look. I don't know what bras to wear, so I wear none. I need to go somewhere and get measured for a bra I think. I probably should have one? I am curious to hear about your nipple appointment. I cannot decide if I want to do tattoos, or nothing, or building a nipple...I think maybe just tattoos eventually.
BosumBlues- traditional things don't seem to be working so great for me either.I am trying to get back to my Young Survival Coalition meetings. It is a bit of a drive, but a nice group of young women. This Tuesday we will be talking about being physically active, lymphedema prevention, getting upper body strength and regaining range of motion. Good luck with the tutor & your college boy.
Wednesday night I am planning to participate in a webinar on issues with dying. I am not stage 4, but I feel like I need to address this before I can move on from obsessing about it. Maybe that sounds stupid. I just feel like whenever I try to bring up the possibility of recurrence, people do not want to hear it & tell me to be positive. I need someone to talk to about this stuff. I hope the webinar is good.
JJOntario- I hope your return to work gets easier for you, and the connection with your husband improves again. The husband stuff can be frustrating & overwhelming for me at times. We argue a lot & I am short tempered.
I fought with my boss, and finally got the verbal reprimand removed from my file. He was a real jerk about it, but I was somehow able to keep myself from being "sarcastic" to him when requesting the letter out. I think he was trying to goad me & see if he could get me to react. I kept it classy, and got the letter out...but to the husband I called him a f*ing f*er, and that made me feel better. He is supposed to be retiring in July. I think I will only have to see him twice before then. I have thoughts about karma and him...and it makes me question whether I am a good person when I have so much hate for him.
Lily- I am interested in looking into the Havening that you mentioned. I know I need more coping skills.
Love to you all. Stay strong.
0 -
LiLi, I hope you can get your pneumonia cleared up. That's going to sap your energy and make everything harder.
JJ, the phrase "new normal" is a pet peeve of mine. It's usually uttered by someone who hasn't got a clue what kind of crap we have to live with. Having multiple doctor's appointments and tests in 1 week is NOT normal. It's sometimes what we have to do, but it's not normal - new or old. I hope the biopsy isn't as bad this time. I had one of those, and I swear they did numb me up to some extent. I could still feel pulls and twinges but not full on pain. Are you getting this one at the same facility and with the same doctor as the last one? Most of all, I hope they outcome is negative.
Smart, first I'm so glad you got that letter of reprimand taken out of your file! Woo hoo! And your boss is just what you called him to your husband. As far as expectations from recon, I don't think I ever expected to look like somebody getting an enhancement. I knew I'd have scars and the patch from the LD flap. I probably told the PS I just wanted to look good in clothes because at that time I was so desperate for any improvement. I did expect a little better than that though. I was hoping my back skin would match my chest skin in color better than it does. I expected the shape to look something like my original shape. It doesn't really at least to me. Maybe the fat grafting I'm getting will improve it. Regarding nipples, I had originally thought I didn't want them because I don't want to wear a bra. My PS says these will flatten out enough that I won't have to wear a bra which is what I consider the one silver lining in all of this. And he swears that having nipples will make me feel sooooo much better about my foobs. He said that right now they're just mounds not really breasts, and the nipples will change that. We'll see. They'll still feel like numb lumps not a real part of my body. The scars and flap will still be there. I've kind of decided that at some point, maybe after Thursday's surgery, I'm going to have to decide it's good enough and find a way to think of them as acceptable. I feel like I'm getting obsessive. Somehow, I have to find a way to stop wanting to cry and rip the skin off my chest when I like in the mirror. I don't feel like that all the time, but I need a way to deal with it when it happens. Something to ask my therapist about. It's an overreaction, and my rational brain realizes that. I do look ok in clothes which is all I had the right to expect. Oh, about bras, I have no idea what size I'd need either. I was thinking I should probably get measured and buy one just for wearing under particularly clingy clothing. Even if the nipples don't show, the flap protrudes beyond the skin around it some, and in one area the "breast" tissue bulges around the scar. I hope you end up happy with how you look.
0 -
Back from my MO and family Dr. I have been having pain on my left side. My family Dr did an exam and I definitely have a mass on my left ovary. Most likely a cyst and he is having an US scheduled along with some blood tests (CA125). I'm trying not to stress out but like what next? Took the afternoon off of work ...I need to care more about my job but at this point I just want to escape to a hot bath!!
0 -
JJ, cysts are really common so let's assume itw that for now. It sucks to have one more thibg to deal with though. Also, the CA-125 test isn't super accurate (or so I was told) so don't panic if the results come back high. Hang in ther, and have a nice soak. I get it about youjob. I need to care about mine too. And I don't.
0 -
As usual I'm way behind on reading everyone's posts. This chemo brain is frustrating the he'll out of me! I stick reminder notes on my bathroom mirror and then have to stick an additional note on the faucet that says, READ YOUR NOTES! wth?!
JJOntario I'm sorry about the mass on your ovary! Hopefully it's a cyst. I relate to all the doc appoints! I've had so many appoints, procedures and scans since treatment ended that it feels like I'm still in treatment! I'm so frustrated!!
0 -
So 3 hrs at the hospital today...no biopsy done because they're afraid it will mess up my MRI tomorrow. Went through another mammo and a simulation with the stereotactic mammo machine to be sure they can see the calcifications. The radiologist was asking why it wasn't biopsied at my initial dx. I asked him if he thought I should be really concerned and he said due to the fact that my body has proven I can make cancer and that I had DCIS in my margins...he is concerned and now my head is a bit of a mess. I didn't even know theses calcifications existed until this September and I'm angry because if it is something my whole lx should have been a mx and I could have skipped rads all together. Rads has tightened my boob so badly and my existing implant is now really firm that the mammo was crazy painful. I know you shouldn't jump ahead...but my mind is going through all possibilities....I'm getting tired!!! This is not normal!!! Like WTF!!!0
-
Oh, JJ, I'm sorry. You didn't need one more stressor. Maybe try to remind yourself that just because your body made cancer once, doesn't mean it's done it again. Mine has made cancer 3 times, but my MO doesn't seem too concerned. It all just sucks though. I get it. I've played that "what if" game a number of times myself. What if I hadn't ignored that puckered nipple I had just because it was back to normal the next day? What if I'd insisted on having MRIs since I had such dense breasts? What if I'd gotten a second opinion from a different PS before my mastectomy. I get furious sometimes. It's futile though. Try to breath and distract yourself if you can. {{{{Hugs}}}}}
0 -
Thanks 2Tabbies. Just got back from my MRI. We were up at 4 am to get there early especially with this stupid snow! They had me in the prone position which kind of threw me off. At one point I know I was breathing too fast so I practiced those slow breaths I learned when having my DD ...who knew it would come in handy again? I was determined to get through this test as my mind really needs some clear results. I'm just so freakin angry that this area that needs a biopsy has been known for a year by my Dr and it was never communicated with me. His words were that they needed to put out the biggest fire first. To lose my breast now after this year from hell would oh so suck. I know I'm jumping ahead...but I can't help it. I do my ultrasound on my ovary tomorrow....just ugh!!!
Holley Kitchen died...and her death really wonked me. Maybe it was because I remember watching her video last year during the thick of things before I knew anything about metastatic BC. This is a horrible freaking disease and no one understands except those that have walked through or are in it. I'm so thankful that this site exists ..
0 -
Sorry JJOntario, sounds frustrating about the test being cancelled because of another test. I can only imagine how frustrating that must feel, when you just want to find out & get things completed....obviously hoping for the best...but sometimes just the delay feels so damaging.
I know people told you on here they had ovary cysts too, and they were ok or the cysts disappeared. If it helps, I had a tumor on my ovary for 3 years before cancer. It didn't change or go away, but was not cancer. Let's hope you are as fortunate as everyone else who has weighed in.
Holley Kitchen passing was really disturbing to me too. For whatever reason she gave me hope & now I need to find another way to adjust that. She made that video in May or June, and here were are in January. (Insert curse words here at the unfairness).
I had acupuncture, a port flush, and a CT scan today. I am a little exhausted. If the CT scan and the blood work/tumor markers I had done a month or so ago both come back normal, my MO will let me get my port out. It is funny how all of this rattles around in my brain. I want the port out. It seems like a sign of success that after two years I get to have it out. I don't want the port out. What if I need it again soon and then have to go through another surgery? I want to ask for the port so I can have a ceremonial burning (or just to give it the finger) of something related to this cancer. I don't want the port, the surgeon may think I have lost my damn mind. Maybe I have.
I went to my Young Survival Coalition meeting on Tuesday night. It was awesome. They had a Physiatrist speak. I did not know what that was...it is a medical doctor of the muscles and skeleton. Her message was pretty amazing, basically she said what we all know...the focus on cancer improvement is all on prevention, awareness, and diagnostics and treatments. That is great, but there is not much there for those of us who have to go on and live our lives with some of these debilitating side effects. Just slap a survivor sticker on our fannies and call it a success until we come back again. Her focus is obviously different. She treats people for side effects, all rehabs stuff, but especially breast cancer patients. It was exciting to know that there is someone like her close by me. I am not able to go to her clinic, but there is an affiliated program near me...so I may check into that to help get my body to feel more mine again. One comment she made that I have heard us all say, is that we feel so much older after treatment...she said the treatments did age your tissues, bones and joints at least ten years...so while many tell us we are imagining things, she is one who is honest about the 'consequences" of treatment.
I listened in to a webinar last night called "Death Over Dinner" which I thought was supposed to deal with fears of death from BC and how to find someone to talk to about this heavy load. Or recurrence. That was very disappointing. The point was good, you need to talk about it. The message, a little lost. Seemed like two grad students with a class project. 5 steps to having a death dinner. I should have watched my trash tv instead. I guess not everything is a diamond, you just have to keep trying to find something valuable.
Fingers crossed I can get "deported" on the 28th!
0 -
Nice post Smartass, and one thing I didn't want to hear - aging 10 years. I will keep physiatrist in the back of my mind and it really would be nice to talk to someone about recurrence, my big fear. In the beginning I called it "spreading". When I try to inform someone of the fact that not everyone is OK after treatment and some die....they think I'm being negative, I call it realist.
0 -
SmartassSmurf-hope you get your port out but I totally get the lost feeling of letting go. I'm sort of that way with some things like I really hate all of my Dr appts but in some ways it is comforting because I feel looked after as I really don't trust my body anymore...that is irrational I know. I have never had a CT scan...but I had my first MRI today. I have visited Dr Google way too much this afternoon and now I'm wondering if my mass is a uterine fibroid only because I can feel it when I lay on my back. Glad I'm going tomorrow for the US because waiting (as we all know too well) just bites!!!
0 -
JJ, I'm shocked to hear about Holly Kitchen. That is so awful She had a young family . Yes this disease sucks, and people who have been lucky enough not have, just don't understand all the time. It's not over when the active treatment is over. I so hope your current round of tests doesn't find anything.
I just had my nipple building procedure as well as a revision today. I'm home. The PS was running a bit late so I didn't get out of there until 6 pm. I was really hungry by the time they knocked me out. Everyone was super nice though. I like this surgery center even though it's not in the most modern, fanciest building.
Everything went well, or so I was told. I was even able to put the EKG sticky pads where I thought they looked best for positioning the nipples. It was far enough above the scar (just barely above it) to satisfy my PS and close enough to center to satisfy me. I think. I'm dying to peek, but the compression "tube tops" must stay on until Monday when I have an appointment at his office. I have one around my abdomen where they suctioned the fat as well as one around my chest. I got blue ones this time instead of pastel pink. Yay! I'm practicing being grateful for small things. I also have some kind of nipple protector cups on. I have no pain at the moment. The only pain I've felt so far was a slight burning like a friction burn on the left side of my sternum. Fingers crossed that I am now beeyouteaful!
I did have one additional sad piece of news. My podiatrist who also used this surgery center, died suddenly from a heart attack a few months ago. I wonder what her receptionist is doing now. It was a solo practice so she'd have to find a new job. Maybe she retired. They were both really nice, and Dr. Purdy wasn't old! I'd say in her late 50s or early 60s. Now, who am I going to trust with my bunion when the time comes? She was so nice, and had a great sense of humor as well as being a good doc.
0 -
2Tabbies: So happy your nipples are a success! We need these great moments given what we have gone through! 😍
JJ: I HATED that type biopsy! I am glad you survived! I too would feel like WTF why did it take so long. I had cysts on my ovaries back in 2007-2008. One of them burst, and I was rushed to hospital. In order to check for these cysts, you will have a vaginal ultrasound--- no pain! Stay on top of you Dr.
Smartass: Loved to hear CONFIMED age-process while going through this BC.
So- I had my third CT scan for my lungs due to the pneumonia (since October) on Monday. Monday night, my Dr called. There is still fluid in right (radiated) lung AND a mass in lung. All scans to MO and RO at Dana Farber. Based on their review of all scans, on Thursday I received the dreaded news...I need to have a painful and risky biopsy of my lung. I am beside myself.....still waiting for call from radiology to schedule. WTF- is it Stage 4 BC or lung cancer or something else pulmonary.
Thank you Lily for suggestion - I am now on inhaler.
I don't know what else to say except that I am so scared!
Lisa
0 -
LiLI-RI. Is it possible that you have lung damage from radiation. I was just diagnosed with pneumonia in my right lower lobe. I am almost 3 months out from radiation. I thought it was my Asthma flaring up after years of being in remission. The x-ray showed opaque streaking. They have recommendations here for diagnosis and treatment before doing a lot of tests. Right now I am taking an antibiotic and using a steroid inhaler. I am also using a albuterol inhaler as needed (mostly when I exercise) because of the asthma which is now acting up due to everything else. My internist is concerned that what I really have is Radiation pneumonitis. Lung damage from radation therapy so he also started me on a steroid inhaler right away. It is scary. I do hope it is nothing more serious however pneumonia and lung damage from radiation is serious enough. I will admit I am scared that mine it the latter. I am just praying that because it happened early it is reversible.
0 -
Seriously...so many of us with pneumonia? Another SE of rads that they gloss over (or at least with me!)
2Tabbies-so happy that your head lights got installed! Yay!! Hope the results are what you hoped for..hoping you are relaxing!!
LiLi - I really feel for you waiting for results. It's so friggen hard not to let our minds wonder. I am right here doing the same. I didn't have the stereotactic biopsy yet as it would have messed up my MRI. I did have my US on the mass on my ovary. At least that's where I think it is...whatever it is ...it's huge and the tech said when it was done "I am putting a rush on your results so my Dr will have it on Monday morning" ...she followed that "with everything you have been through" but now I don't know if she was just being nice or if this mass is scary??? When I looked at the US screen it was big, bumpy...not a smooth round bubble. Oh Google how I love/hate you. So that's where I sit this weekend...just waiting. At least DH has been more supportive today!!
0 -
JJOntario - did you have a pneumonia vaccine?
0 -
Marijen - no, no pneumonia vaccine...I had never considered myself high risk for it (??) and my Dr never mentioned it either
0 -
I was told I did not need to get the Pneumonia jab cos I have breast cancer, but because I have Coeliac disease.
Hello everyone.
0 -
i was warned about radiation pneumonitis. They cannot tell from the xray what it really is. I prefer the conserve approach to diagnosis at least for now.
0 -
Lili and JJ, I'm so sorry that you're both having to wait anxiously over the weekend. It sucks. Praying for good news for both of you.
I'm still feeling tired from Thursday's surgery. This is odd for me. It's the first time in all my surgeries that I've felt the need to nap. I'm also having a little trouble focusing my eyes. Never had that before. I hope it's just fatigue.
0 -
Lili and JJOntario, I too am sorry you have to wait over the weekend. No good can come from waiting unless it is eventually good news.
I had radiation pneumonitis too. They originally could not tell me if it was that or spread to my lung. I did not have a biopsy, they had me wait a month and have an additional scan to see if there were changes for good bad. Yowsa this stuff is stressful.
I do have good ct & tumor marker results to report. I got the all clear to finally get my port out. I am excited about that.
Wintersocks, good to see you back.
2tabbies, congrats on the nipples being done! One more step in the right direction.
Stay warm, -17 here tonight. Brrrrrrr.
0
