new to forum, diagnostic mammo and ultrasound found large lumps

Susie, I would want to be just like your friend in her 70s-- no matter what cancer may keep coming back, I would continue to fight it and go on with life, in the best possible way I could.

Yes, the muscle that popped out over the expander is supposed to be put where its supposed to be when I get my expanders exchanged for the implants. However, I rightly do not trust anything to go as planned! lol...I'm trying to be "flexible" in my expectations. But for now, I went to the "cancer lady store" and bought a bathing suit that comes up so high on my chest it covers the weirdo-looking muscle, even though my surgery will probably be in a little over 2 months. It's Florida in the 90s and I don't want to have to never wear a bathing suit for even 2 months. When I was shopping for the suit, I found out from the sales lady that my insurance covers 4 bras a year!!! I didn't know that or I'd have been buying bras in 2016 and 2017. I didn't get one yesterday while swimsuit shopping, as my husband was with me and he had already been waiting patiently for 2 hours while I tried on many, many suits.

Writing here on this forum has been great for ME. Occasionally I have worried that I have wondered off-topic too much, too often, which is why I had wanted to stop writing about the disease I shall not name. But Susie, you made a good point. If someone is reading this to see what it's like to deal with breast cancer, everything else doesn't stop in life just because you get cancer. Other problems can and will occur. So along with cancer, I am also dealing with this other disease, which may be happening to other women as well. Then I didn't want to write anymore about my PTSD that I got while being treated (atrociously) for that other disease, because that seemed to be definitely off-topic. Then I realized that I am able to get counseling for my PTSD simply because I have cancer. I guess the cancer center has had enough people get PTSD from dealing with their cancer, so they offer free counselling for it. My PTSD is, of course, related to how hideously the hospital treated me for the other disease, but PTSD is PTSD and there could be women out there reading who did get PTSD from their cancer, so I have my "excuse" to babble on about it.

So after I read your post responding to my telling of the 12 days of horror I went through, you made it abundantly clear that mine was not a rare case, that patients are frequently neglected, insulted, misdiagnosed, etc. I had NEVER expected that. To me hospitals were places you go to get healed from injuries (or disease) and then back to your normal life. So even though I had PTSD and went through many dark minutes and sometimes hours when something would trigger it, your post about how common hospital mistreatment is, DEVASTATED me. I instantly fell into my black whole and stayed there for 3 days. I remember closing up the laptop, and everything was black... as I walked straight into my son's room which was just a few feet away. I remember giving it a second of thought as to go into that room because it has blackout drapes and all I saw was black anyway and my surroundings had to match....I had to go into a place I was already in... blackness. I curled up on the bed (early afternoon) and stayed there for 3 days. I didn't leave at all the first day (I have a strong bladder), and on days 2 and 3 I just left to go to the bathroom which is just a couple feet away from the bedroom. My husband kept checking on me, offering water and food and encouraging me to leave the room, but I basically don't remember any of his words and I basically just mumbled No to whatever he said. From those 3 days I only remember the feelings I experienced-- fear, dread, depression, disgust, and that of being alone in blackness, abandoned and left to suffer. In other words, the same way I felt during my 12 days of horror.
I sound pathetic. That I couldn't help myself. That I couldn't accept my husband's offers of help. But I couldn't, I was paralyzed on that bed.

That 3 day anxiety attack was the longest, but the shorter ones continue still. A few days after I left the room I had a fun day planned with my best friend of 40 years. We drove to a downtown walkable area that features lots of arts shops, and jewelry and clothing stores, great restaurants, and scenery you can't beat. It's a place you go to planning on spending several hours. I got a great parking spot right in front of a park area that was set up with local artists displaying their work in the park. The artist directly in across from the sidewalk in front of my car had great work that stopped us in our tracks to admire. We also were having great and lively conversation with the artist, had a passerby take a picture of us with the artist (we talked to her so long we felt like friends).. so there was lots of laughing and great fun right from the start. I was holding onto my friends arm for support, as the ground was not level and I still lose my balance easily. Then my friend dropped to the ground. People gathered to help, but she was unconscious for several minutes. A couple men helped put her on a bench. Folks brought water in case she was dehydrated and food in case it was low blood sugar, but she could neither eat or drink. It took over an hour before she slowly became herself again... recognizing me, able to speak (slowly and slurry) and able to move her arms and legs. After a few attempt at standing, we got her up and into my car (which thankfully was right there!) and I drove her to an ER that was just a block or so away. Okay, here's where my PTSD kicked in again. She is my best friend so obviously I was not going to leave her side. They were able to get her into a private ER room right away, and as we walked to it we passed a room with a man in it that sent chills down me, and my heart racing..... He definitely looked like a "2 max". He was very old, and his body was contorted into an unnatural position and his mouth was open wide as if he were screaming, but no noise was coming out. His contorted body did not move at all. The lasting image of him came with me into my friend's room. The ER took about six hours of getting different tests done. The nurses there were great, but I was frozen in fear. I forced myself not to show any of the reactions I was going through inside, for my friend's sake. The only way I could deal was to have total tunnel vision, where I blurred out everything but her face. I sat fairly close to her bed, but it was still painful eyestrain to MAKE everything but her face into a blur. I left the room once to go to the cafeteria to get her some lunch, and so I had to pay attention to the directions..... go down this hall, through those doors, turn right....... and everything I saw was like i was being pushed into a dreadful space (head space)... The hospital colored walls, the types of very wide double doors , the marble floors, the posters on the walls... it was like I was being attacked. My heart races and my throat and chest get extremely tight. But the majority of the six hours was spent with just the tunnel vision of my friend's face and everything else was a blur, which gave me pretty severe eyestrain and a pounding headache. They finally decided to admit her, where she stayed for 2 days, had a million tests and no explanation for why she had collapsed into unconsciousness. It was difficult to drive home. The next day I continued to have tunnel vision for several hours, and i just felt.... BAD.... off..... like my world was tilted.... I know I'm not making sense, but I don't know how else to describe it. I have had tinnitus (ringing in the ears) for many years, but the whole next day or longer it was amplified tenfold.
Pt one.... pt 2, which will be much shorter, coming up soon.

Post Edited (exqualls) : 5/4/2018 10:30:59 AM (GMT-6)

Linda, I think with PTSD there can be all sorts of triggers for people that suffer with it. Just from what you saw about the airplane situation, I have to agree with you. Personally, I think it was stupid & the show must be hard up to get people on it with real problems & issues!! I have been on flights where we were delayed to either get to the gate or take off. No one went on tv & complained about it either, lol. Was I happy, no, but it is just one of those things that can happen.

What an experience for your friend. Is she still doing ok? I think it would be a little frightening to have something like that happen & have no answers as to why. Thank goodness you were there with her.

My friend is struggling somewhat with the IV chemo. She gets chemo crash & says she tells herself for every rough day the next day may be better. She has lost her hair again, so she wears hats. She lives down at the lake & it is a tiny town. She is organizing a cancer support group down there. Something like that will be a blessing for many & word will get out too. Her & the husband ended up adopting a little boy, I think he is 10 now. It is a very long story, something to do with some friend of her daughter. The mother was busted for drugs & was sent to the pen for a long time. Her daughter committed suicide (long history of mental problems) & this little boy came into their life shortly after that happened. He has given them a new purpose in life. Keep in mind they are in their 70's. In a way, I feel this little boy has probably extended their lives, between keeping up with his sports & their health issues they stay busy. She went on a field trip to the Austin for the day last month. She said yesterday her legs are still giving her fits from all of the walking. She amazes me.

Our weather is typical for this time of year. We are warm for good now, the weather man said we could put our jackets away for the next 6 months, lol. I have been planting some flowers in pots & still have a couple of more pots to make. I have some pots to sit by the pool. I sit out back every morning & have my coffee. I love to watch & hear the birds. My son finally saw a pair of black & yellow birds that has shown up. He looked them up & they appear to be Baltimore Orioles & they are common here. I had no idea.

Please keep writing your experiences here. I do not feel they are OT, they are very much a result of the cancer dx. No, you are not a mess, lol. You have had some extremely traumatic things happen.

Take care.

I am so thrilled to say and feel that I actually have hair again! I know it's been coming in very slowly for about a year now, but it's really been until the last month where it is long enough (about 4 inches), where I can style it and it looks cute. It's still not the long hair I miss so much and want to get back so desperately, but I can look in the mirror and admit "this is a cute hairstyle".

I see the cardiologist today because.... I can't remember..... before you start chemo you always get your heart checked since chemo can damage your heart. I remember there being "something" he wanted to keep an eye on", I believe an aortic aneurysm-- which to me sounded like imminent death-- but he said was something I could have had for years and years and I will just go to him once a year to make sure it hasn't moved or grown. Plus I have a murmur.... I don't even know what that means, but no one has thought it was anything to give a second though to.

My recovery from Voldemort is still about the same, maybe 90% healed. Which I am extremely happy about given what I've learned about other folks' outcomes, I still feel that if this last 10% doesn't come back I will never be ME again. Having paralyzed bottoms of my feet, and numb palms seriously effects everything I do in life. I am a GREAT WALKER!! I can walk quickly through my neighborhood as long as I can see the surface is flat, and I can walk up to an hour and a half. Doing this daily has helped me lose 17 pounds that I had gained once I got cancer, then Voldemort....However, after that hour and a half I kind of pay for it. For the rest of the day I'll have recurring, unpleasant electric shock throughout my legs, as well as numb patches of skin on my legs, and the worst thing is I end up wobbly the rest of the day.

I feel anxious if I think too much about my upcoming surgery. And I USED to feel no anxiety about surgeries. Surgeries are a good thing! They make you better, take care of your problem. But knowing a surgery could actually invite Voldemort back into my life sets me off into a spiral of all that could go wrong and hearing people say "I'm not willing to help".... So, not thinking about it!

Hope everyone is doing well. Best of health and positive thoughts to all.

Susie, I'm glad you had a nice Memorial Day.
It is hard for me to think right now.
I have become a MESS with anxiety about the upcoming surgery. I did get some anxiety pills from my doctor and just took one, when I felt I was about to erupt. I should have taken it before it got that bad.
I just feel certain that something is going to go wrong. I've never had fear about surgery before, but I've had so many rare things go wrong.... I just know something bad is going to happen. I can't talk to anyone in person about this as I keep going and going and with vocalizing the fears, they get louder and more hysterical sounding, whereas this is just typing so I don't go off the deep end here. I yell at my family for (almost) no reason. The smallest thing sets me off. Aye, aye, aye.

Just wanted to update my status. My goal still is for this to be a journal that any woman facing breast cancer can read one person's experience....from start to finish.... the physical stuff as well as the emotional rollercoaster that can happen.

Best of health and positive thoughts to all!

Susie, if we lived near each other, I'm sure we'd be friends in real life. Two times in the past ten years it has worked out where I got to meet an online buddy, and both times we clicked.

I think it's wonderful how you get to take care of your grandson. It is my DREAM to one day live near my son and his family (when he eventually has one!) and help however much they'll allow me!

You are right that it makes ALL the difference to take the anxiety medication as soon as I feel my panic begin. I do have a counselor just for my hospital anxieties, but I haven't been able to see him as often
as I need to. Just last week I had to cancel the appointment that I had scheduled. I need to reschedule but in the next few weeks leading up to my surgery I have SO many things scheduled already that I am just trying to have a few FREE days. That's my excuse......I need to get past that and make the dang appointment. I have to say that the appointments with him unnerve me a bit, and I don't know why. It's nothing about him personally....he doesn't smell, lol, or interrupt me, or come on to me. I think it's just talking so pointedly and SOLELY on that problem that keeps me from making my next appointment. With my cancer counselor, we don't soley talk about cancer.... the majority of our time has been (very helpfully) spent discussing my emotions regarding both of my sons and my marriage. But I KNOW that she would be telling me to RESCHEDULE THAT MISSED APPOINTMENT. So it's past business hours here and that call will have to wait until tomorrow.

Our weather here has been miserable as well. We've been getting our fair share of rain, so I wish I could send some your way. When it's not raining it is so humid when you open the door it's like walking out into a steam bath. I'm sure you know that feeling.

I saw my neuro about Voldemort yesterday. I asked that since it's been over a year (14 months since I became paralyzed), that if this amount of improvement is as good as I'll get. He said 'almost certainly, yes'. There can be an odd case here or there when a person continues to improve after this amount of time, and I will hope and pray that I'll be one of them. Really I am so grateful to have improved the amount I have, and as quickly as I did. However, as I've moaned about on this site, the 10-15% of me that hasn't improved---bottoms of my feet and palms of my hands, have been the most important parts of me for doing every activity that filled my pre-cancer/pre-Voldemort life. So I am returning to an activity I used to do as a child-- paint. Even though my hands feel like they're wearing latex gloves, making it extremely difficult to hold a brush, lol, I have enjoyed it immensely. I drop brushes many times during my painting sessions, but I keep going. I work with oil paints, which take an enormous amount of time to dry. I have dropped one wet painting and have it land and bounce off 2 other wet paintings as I clumsily try to catch it with my numb hands. But I've had people want to buy them and commission me to do specific ones for them, so I guess my inadequacies have not diminished my work too much.

Back to an actual cancer subject! Has anyone ever heard of either the mastectomy or the chemo or the radiation causing the underarm sweat glands to stop working? I don't think mine sweat anymore!! The rest of my body makes up for it, lol, but it does seem odd. Also, my armpit hair has not returned. The hair on my legs and bikini area came back right away, probably a year ago. Anyway, I thought these 2 things were interesting.

Best of health and positive thoughts to all.

Linda, yep the priorities are a bit skewed right now, but that's ok. You have a lot going on at the moment. The one appt I do hope you will make is with the counselor you have been avoiding for a few weeks. I think it is a critical appt with your pending surgery. When I got this overwhelmed before I made two lists. One top priority & the other not. I ticked things off as I went along. It may sound a bit silly, but it helps.

Back in the 80's I had a hysterectomy. The surgery went fine, but apparently I got very sick right afterwards & do not remember it. I called my sister & told her something was wrong & I was really sick. She came to the hospital immediately. I do not remember calling her. I woke up lucid on the 3rd day not feeling well. There was a general surgeon that was brought in talking to me & they were considering taking me back to surgery to figure out what was wrong. They ended up putting in an NG tube & just monitored things. They finally dx'd it as ileitis. All I know is I was sick. My 5 day stay turned into a 10 day stay. The next time I needed surgery, I was scared. I had been to this hypnotist a few times before, she did a lot of this for stress. Don't you know 2 days before surgery I went & saw her. Sounds crazy I know. I did not know I could ever be as relaxed as what Nancy could make me feel. Several of the big insurance places here use to hire her to come in & do stress relief for their employees. It was fantastic. I wish I had a Nancy I could send your way.

Being able to help out with my grandson has been wonderful for me. He has only been kept by family all of his life. It has always been a grandparent or his aunt. Both parents can go to work every day & not worry about whether he is being cared for or not. We have a good time together & he is so much company for us. He is very outgoing. My neighbors around here always talk about how friendly he is & he talks to them. He will see my one neighbor outside & run over to say hi & to just talk. She said its so refreshing to see a kid his age actually talk to people. He is not perfect by any means, lol. All in all he is a good kid.

Just remember, take things a day at a time. Sometimes, we have to do it by the moment too. Yes, I have no doubt you & I would make great friends if we lived close!! Although I only know you as an online person, I feel I know you.

Keep me posted.

Hi Exqualis!
I just read all 12 pages of your thread. I am so impressed by your fortitude and your desire to push ahead! And I am so thankful that I found your thread. I too live in FL and wow! it's hot, lol. I pray so much for you to keep pushing onward and look forward to reading more.
I found you by following Susie as she is the moderator for the forum I read. Kudos to Susie for her added insight.
You are both amazing. Keep on trucking! None of us really knows what the future holds; however, positive thoughts and prayers can always help. Sending mine your way.

Zen Hen, I am so glad that posted! I think Exqualls is an amazing & very strong lady too! She has had over 40,000 views on her journey & I feel certain she has helped many people along the way.

I hope this finds you doing well.

Howdy. I don't have much positive to say,,,,,which is what has kept me from writing. I feel ungrateful, or rude somehow, if all I do is come on here and complain about one thing or another. But truly, if nothing positive is happening, then there's just no writing.
My surgery is actually july 17, i had the date wrong before. My pre op visit with the PS did NOT go well. I left in tears. I don't know where I got the idea that this surgery would give me 2 fairly same sized and symmetrical breasts, minus nipples to be added somehow later. But that is NOT what is happening. The ONLY thing happening is switching the expanders for implants. That alone is nice. It's a big deal. But it does NOT make me normal looking even fully-clothed. I guess because of the failure of the right expander and how long it had to stay that way before getting the new expander, the right breast is so far from being level with the other breast. Like if I were in an airplane seat, I'd be in seat 11A and my right breast would be in seat 12A.... it's just a LOT lower. I have no clear understanding as to how it can not be lifted up at the same time as the expanders are switched out for implants. But blame Voldemort again. She says she will only do one thing at a time, to keep me under anesthesia as little as possible. That's nice. That's important! However I handled the news VERY BADLY. To know that I'll leave the hospital with the breasts still in different rows on the plane, and that would mean ANOTHER SURGERY to lift the other one up, stressed me out so much. Another surgery. I have avoided doing so many things because I didn't want to take a chance of getting sick or injured before this surgery, therefore delaying it. I wouldn't didn't fly up DC to see my son, as I was avoiding crowds. No swimming in pools or floating down the Weeki Wachee River, as my immune system is so low, I could catch any water born bacteria through a hangnail.
Probably everyone else knows this, but I was not aware until my recent visit with my onc, that my WBC count will probably stay low for 3-5 years post chemo. Stupid me! I thought a couple weeks after chemo stopped, which was a year and a half ago now, that it would be back to normal. lololol. My latest WBC was just below the normal range... normal being 4.0-10.0, and mine was 3.9...... Even during chemo it was usually higher than that.
So it wasn't the fact that I learned from my PS that my breasts weren't going to be "perfect" or whatever.....it was knowing there would be AT LEAST one more surgery after that. And feeling that my whole life is going to still be halted, waiting and waiting, to actually DO anything.
I had been making myself happy with the one thing I could do-- oil painting--no matter how many times I dropped a brush, mistakes can always be fixed on a painting. But the news from the PS put me in such a downer mood.......just seeing me type that stops me in my tracks... the pre-cancer, pre-Voldemort me would NEVER have felt down for more than a quarter of a second, before going back to Ms. Positive. But I just don't bounce back into the positive zone quickly any longer. Since the appointment with the PS I basically have done nothing but watch TV, locked away in my son's old room, so I can close the door. There's a humongous TV in the family room, but that would make me visible to my husband and other son and I just want to kind of pretend I don't exist right now.
There are a couple other non-health related things that are causing me great distress, too, so it's not "just" cancer and the surgeries for it, that have put me in this room.

Susie, I never did reschedule with the PTSD counselor. I did try a couple more times and the calls actually dropped twice, and i did not try again.
So, surgery is a week from today. I don't know if I'll post again or not. I hope to be able to write in a couple days and say "great news!! I jumped back into the positive side of life again and have left my son's room and TV!!"
Even if I don't post I'll check in to see if you, or anyone else posts. I know it's still early summer and you have many hot days ahead, which I hope you can endure. Best of health to you and your family, and to all.

Post Edited (exqualls) : 7/11/2018 9:29:38 PM (GMT-6)

Zen Hen I could hug you

Thank you.

Surgery "went well" i guess. from the doctors' perspective. i entered the hospital thinking it was going to be an outpatient surgery, which made no sense to me at all. However, right away they said it would be overnight. I had thorough discussions with all the nurses and the anesthesiologists and doctor, so I entered the OR feeling quite relaxed and at ease. At some point that night I had a PTSD attack!! I can't remember what triggered it, my only memories are of me being HYSTERICAL and sobbing uncontrollably, and a rotating set of people would come in one at a time and ask me what's the matter, or something similar, and as I'd be crying and trying to give an answer, that person would get up and leave while I was still speaking, and a minute or 2 later another person would come in, do the same thing, and repeat repeat repeat. There was no counselor called in.

I can't talk about that anymore now. about my breasts.... the first day they were frightening. I was just a barrel chest.... no outline of a female shape at all.... definitely uniboob going all the way around me it seemed. After a bit of swelling has gone down and I can least see that there are 2 of them. Not lined up next to each other and not remotely the same shape as each other, hopefully that will change.

Gotta go empty my drains!

Linda, I guess the heat has gotten to my brain!! I thought I had responded here & see now I have not done so!! First off, I am sending you a big ole hug & as many positive vibes I can muster up this morning.

Now you have had another surgery, the light is dimly lit at the end of the tunnel for the final surgeries. Try with your might to remember this. You have been moving at a snails pace in the tunnel. Just too many complications caused road blocks.

I am going to make a suggestion about your counselor that has been hit & miss. Please consider seeing a female instead of a male. I know first hand about discussing things that we really would rather not. It was easier for me to back burner some things than actually deal with them. At the same time you need to be able to connect with the person. The psychologist that I saw was a lady & I saw her weekly. Each week it got easier for me to go see her. In fact over time I looked forward to my weekly visit simply because I always felt better after my appt. I can assure you, I would not have been able to have done this with a male. So please think about this. You need help & it needs to be consistent help, not this hit or miss you are getting with this guy. I am going to be calling her office & see if she takes Medicare. Back when I saw her I had private insurance. This has been on my mind about your situation, I do worry about you & care. We may have never met, but I consider you a friend & someone I care about.

I hope you will stay with your painting, some distraction is better than none. As for posting only when there is something positive to say. All I can say is it's a good thing we don't have a rule on that here or I would have been banned a long time ago, lol. Venting is good for the soul, so have at it. My mother would always say, there is more room out,than there is in, she was right about that.

I am concerned & thinking about you.