May 2016 Surgeries

Happy Birthday, Val!!! I'm glad you got to go out and celebrate with friends and do "normal" things. It's amazing how those little mundane things, as you called them, can mean so much. I had a birthday just a couple of weeks ago myself, but it was a tough number for me for some reason so I didn't really celebrate.

Grandma, I'm so glad your friend is doing well now. As we all know, just because she's now cancer free does not mean she won't need the support so I'm sure you'll get the opportunity to lift her up at some point. Don't know what I'd do without having a place to vent, for sure.

Speaking of birthdays and age - One more bit, because I think you all will understand - it's isolating, all this. My friends, my peer group - they're all having their first babies and talking about teething and trading cute baby photos. Or promotions and realtors and house-buying. And I'm just - trying to exist day to day. I can't add anything to their conversation. They don't want to hear about cancer or surgeries or my problems or progress. Who wants to be this young and grappling with mortality? No one, and I don't blame them. I also would rather hear baby stories. Heck, I welcome them.

The few friends I have who are actually willing to listen and be supportive are older, in their 40s-50s, and I think it's because I'm not the first person they've seen deal with breast cancer stuff, and they tell me so. And they're pretty understanding that this has pretty much eaten my life. I appreciate them so much, but...

Ok, done pouting. I am facing a second birthday after hearing the C word and it's frankly kind of depressing. I really thought I'd be past this by now and back to a "normal" life where I had stuff in common with my peers again.

Thanks for giving me a place to mope. Done now.

GreyKat... Hoping today is a good day for you and more follow.

SpecialK - so sorry to hear about your FIL. It's always rough. I've been to far more funerals than weddings and it never gets easier.

About the surgery being "proactive" - I don't like that word, because I don't think it's accurate in my case, and I think it creates this false illusion that I just woke up and chose to have a double mastectomy at a young-ish age so I could tra-la-la get on with my life, and that's not at all true. I respect everything you ladies have gone through but I didn't just show up on here hoping to fit in with the cool pink ladies while I skipped on with my life. I am *not* upset (in case this sounds that way) just trying to explain. There's a lot that I've never mentioned on this board because this is a public forum and a breast cancer forum, and I try to stay on-topic, and there are other forums for other cancers, etc.

With the information I had I didn't feel I had any choice but the bilateral mast. I was rushed in for ultrasound and exams and eventually mri before surgery because there were breast lumps and pain and funky stuff already going on and I just hadn't been to a doctor in years. And when I did finally see a "normal" doctor, the first lab I had done in years came back bad and I had to have biopsies (not breast) which turned out to be some degree of precancerous. That was scary enough by itself, but we have nine kinds of cancer in my family tree, and we all die from whatever we get, because whatever mutant kinds of cancer we grow don't respond well to treatment. That's just how my large, extended family is. You know you'll die of cancer, you just don't know which organ or how young you'll be. Even the kids/teens get cancer. We are one type of cancer shy of meeting the criteria for a third genetic cancer syndrome - already meet two - and I have an immediate family member who's already had precancerous growths of that type removed, so we're just waiting.

My bad not-breast biopsies, bad test results, weird breast issues and horrible family history is why I had an immediate referral to a cancer center and why I've had so many bloody specialists on my medical team (lots of symptoms to watch for). Was I healthy before surgery? I felt good, but I guess I wasn't. I was already starting to grow bad cells; I got to hear about watching vs "cutting that out". The cancer center crew wants to pull out many organs (some surgeons more eagerly than others) because there's no effective screening exams for some of these cancers - and/or put me on chemo for the rest of my life. That's the best-solution plan they could come up with and what they do with this brand of nasty, apparently. I call it insanity and I've refused over quality-of-life issues, and at least one of the specialists supports my choice. He says he sees that with really sick patients, that eventually some of them draw a line and say "no more".

But exchange surgery is not my last surgery. I have more I'm supposed to have, and as soon as possible. I've thought it over and I'm choosing not to. I'm going to gamble instead, and as I've told others in another cancer support group, it's my body and my life. If I (or you) want to gamble with my (your) life that is my (your) choice. The surgeons are not going to tackle you and start cutting. But I know that one day it will come, next month or next decade, whatever organ, and because I waited, my odds will not be good. But this has all gone so badly this far that I can't deal with living longer with worse. I'd rather live shorter and better, and I did not make that choice lightly. My finances are in order, my personal property is deeded to transfer on death, my debts are all paid, I've squared some old wrongs and thanked those who stood by me, my life insurance is set, my beneficiaries have their marching orders, my power of attorney and health directive are current, my papers are all organized, and my partner has instructions on what to do if I die and how to handle financial priorities and his retirement planning. I've prioritized my list of "fun things before I die" and done a couple in the last year or so, because why wait? Life is too short. I'm not at all perfect in what I'm doing, not at all, but this is how *I* choose to handle helplessness and inevitability. Shoot, I've even kept up my years of volunteer work as best I can, because my work there will outlive me, and that's a good feeling.

Anyway, I'd been concerned about the lump/pain combo for a few months. Between the biopsies and then all the breast exams to check for already-present cancer, and the geneticist and batch of specialists that descended on me to dissect my grim family history, the consensus was pretty much all that my clock was rapidly ticking if not already running. Even after all the exams the drs wouldn't say clear or not clear about cancer issue until after surgery and the tissue was sent to pathology. My BS refused to give me a verdict on my cancer status until after she'd removed everything. So I didn't know my cancer status until after the surgery, despite ultrasound and mris. No one thought waiting on surgery was a good idea. So it wasn't "proactive", because they wouldn't clear me and I wasn't really healthy anyway, I found out. Ultimately, I felt like I didn't have a choice.

And that was really long and got kind of morbid there for a bit, so I apologize.

SpecialK words are not enough for what you have been through. My warm thoughts and hugs are with you. And yet I so much appreciate your concern and support for us. It is courage like yours that keeps me going. I read your post to my nephew who is 40 and facing 3 separate cancers in his abdomen. Pancreatic, stomach and liver. All separate. You never know what someone is/has gone through unless they tell you. I appreciate your support and encouragement on this thread and others.

How it has helped me: I lately have had thoughts of why my cancer was not caught on imaging, how could i be a stage 3 with so many nodes, and I did what was told over the years, mammos, biopsies, ultra sounds. Then I was the one to find the lumps and redness 7 months after a clean mammogram. The only option for me was mastectomy. It helps my mental health to hear of others that have similiar struggles or worse struggles. thanks so much for sharing your details.

I know I'm rambling but I thought that chemo (4 dose dense adrymicin (red devil) and dose dense taxol and cytoxen ) were the worst. I had no idea surgery and then a rad induced stroke would be far worse than chemo. I'm left with so many ailments (lack of a better word) from the surgery. Nerve damage, lymphadema to name just a few.

end of rant.

Your post proves you never know who you encourage or help. Thanks SpecialK

Thanks SpecialK for sharing. I am sorry to hear your journey has been so grim and unending. I hesitated because genetic cancer disorders are terrifying and overwhelming to most people, and practically addressing them IS rather depressing if it's not your "normal" - and I don't want to drag everyone else down. But that's what I mean by isolating - my peers are having their first babies, dressing them up, giggling over fat little baby knees and funny little baby faces, and I'm in my corner preparing to die while trying to get my health back to have some kind of good life in the meantime. As a general estimate, I've got anywhere from tomorrow to 10-15 years left. I'll be lucky to hit 45-50. I'll be exceedingly lucky to make it to 55, and that seems so far away, but I know it really won't be. Time has a way of slipping past. And I still haven't really processed all the biopsy and everything, not really. I reached burnout and canceled a couple appointments and you know, my BS left so there's been no followup there. Which is fine, really. I've got my hands full.

Frustrated mini-rant: It seems like no one (not medical) wants to hear anything but lies, lies like "Oh, I'm fine, PT is amazing, I'll be better in a month" which aren't even in the realm of possibility. And I'm not going to lie. So I just don't say anything. And if I don't have the energy to act "fine", I avoid everyone except the PT. Someone asked me yesterday if my hand got better with every visit, and I was just lost for words, because she's a sweet girl I really like, I appreciate her caring, and she meant well, but I didn't know how to not be Debbie Downer answering her. The answer is no, not at all. In fact, sometimes what we do makes it worse for weeks, and then we've got to figure out what happened. And it's not that simple, it's not just one hand anymore even if it was just the hand. A hand doesn't function in isolation.

Then there's the fact that most of my family just doesn't know anything about any of this, anything at all, because I don't like being gossiped about, they wouldn't really care, they'd just make a big fuss about it and none of it would be helpful. Well, these are the people holidays are made for, and they needle me about why am I so tired when I haven't done anything, etc and all that sort of irritating, childish rudeness. Ignoring it hasn't put an end to it. After a year or so of weight loss, largely uncontrolled, I've finally stabilized (I think) and am almost completely off the medical diet, and one of them decides to call me fat (my BMI is about 19 right now) at Thanksgiving as a joke because I took gravy! Do you know how happy I was to be able to eat normal food at Thanksgiving? But what they do see is funny to them. *rolls eyes* It's very juvenile.

Also, I'm tired of explaining repeatedly to the same family member (who DOES know) who shrugs it off and slaps me with unreasonable expectations - for example, insisting I need to come over and help haul boxes out of his basement after I just finished explaining for the umpteenth time that I have a 2lb weight restriction and absolutely nothing on the left side of my body at present is working properly, not my arm, not my hand, not my leg or foot, not my back muscles, and as of this week part of my rib cage has destabilized [which a) I had no idea could happen, and b) is impressively painful]. Tired of people telling me PT isn't helping just because I'm not "back to normal".

I feel like I say this to everyone eventually when they get confused about why I seem worse - the gains are small, and measured best by the month, not by the day.* And it's not a small thing. When the nerves go, the muscles go, because they don't work well anymore. And when the muscles go, the bones go too, shifting about as they no longer have the balanced muscle tension to hold them in place - even ribs, as it turns out. And when bones move, they often pinch nerves. So it's a nasty spiral, and I'm still trying to climb my way up and out, and that means some bones get pulled too much and some muscle groups accidentally get unbalanced while we're trying to build up other areas. It's a PROCESS. *exasperated* It takes months and months and months, and yes, it wouldn't have gotten this bad had I not been denied PT for five months, but it's not like the damage from that delay can be undone overnight, so like SpecialK said, it's just getting up in the morning and putting one foot in front of the other. Heck, I do just that when I'm having trouble walking and I have to think about it.

Valstim - I hear your anger/rant. If I'd known what this surgery would cost me, I don't know that I'd have done it. Actually, I told my surgeon a few months ago that frankly, I'd prefer cancer, because at least I'd have a working arm/hands/etc and would have gone along happily and fully functional as long as I had. My quality of life was much, much higher before the medical establishment ever got ahold of me, and I feel they lied, lied, lied about how well it would go, certainly how fast I would recover from the surgery itself, and absolutely lied about the risks. I'm mad at my PS because they deliberately withheld information about implant risks - information I had specifically asked for and was told didn't exist - until after the TE's were already put in and we were talking about squishies, and yes, I gave him an earful over that one.

It is still alarming to hear about you ladies with 2+ cm lumps that somehow MRIs and such missed.

SpecialK - I also get my ovaries scanned but that's just a stopgap, really. They've made it clear that the science of it means that by the time anything is large enough to catch, the 5 yr survival rate plummets. Which is why they want to remove them, like, yesterday.

*ETA not to mention that insurance companies require regular updates from PTs, mine is roughly every month, and if I don't show clinical progress of some degree they won't pay for continued treatment. Because as my PT says, "People who are going to get better with PT get better with PT."

greykat - it breaks my heart that you are young and should be distracted by happy things like babies and fun, and not by what you are currently dealing with. I hope you know we are all here for you - we get it, never worry about how long your post is, or what it says - we are on this forum to help each other hold steady. Often, the only ones who understand are the ones who have been there too.

Forgot to ask in my last post - how are you ladies currently dealing with your scars? (Have I asked this before?) I'm thinking I should be doing more....

toy story - I use a product called Biocorneum - it is liquid silicone and helps flatten and soften, it also has sunscreen and FDA approval. Some use Kelocote and Scaraway, which are similar. at the very least moisturizer and massage are helpful

Waving hello to all. greykat i think of you every day. sending you gentle hugs. Greykat, Raven4mio grandma my toy story2 , tsoebin, so understand about the sadness with this new reality. I don't like it but i have to learn to come to some sort of acceptance (in my case hoping for no recurrence, radiation scars that make others give me the pitiful look because they go up my neck and chin. Being one sided and burned with no hope of any recon until next year, if i live that long. i can't even talk about the nerve pain that seems to be worse when I do what is recommended)

but i'm grateful to be here and have you ladies for support. No one understands like someone walking similar shoes.

special k for your words of wisdom and sharing your story. To all of you. Thank you so much

GreyKat - I think it all goes back to the follow-up surgeries after the complications. Additional skin was removed from the right side two different times, so they're just never going to look the same. The left side looks bigger and fills the lower part of the bra, the right side stays higher and tighter and appears a little smaller despite being the same size. The next time I meet with my PS I'd like to show him how I'm looking in a bra instead of the usual "remove your clothing and put on the gown" routine just to get his thoughts on the situation. Maybe I need to have different sized implants to achieve symmetry. I already know I'll have a revision surgery next year, so everything is up for discussion.

I'm not upset about it....I think I'm just always adjusting expectations at this point....as we all are! I should maybe change my wording in my previous post. The infections were total game-changers, unfortunately. All dreams of this being a textbook experience went out the window as soon as I was re-admitted to the hospital. I think I'm just realizing that this is my new normal and it's time to learn to love the new me, whether I'm ready to or not. Again, forever grateful that I was able to keep the TE's and continue with the reconstruction process - without any foobs this would feel unbearable to me personally (although many other women are flat and fabulous - bless them!).

How are you feeling today?

Val - You've been through so much! Hope your stroke recovery is going ok and you are feeling a little stronger. You are in my thoughts!

Raven - I hear you on the menopause thing. They want my ovaries & tubes out too for genetic risk. There are a lot of reasons I'm refusing, but super-unhealthily-early menopause is a big one. Obviously the gap isn't as long for you as it would be for me (decades!) but it's a big thing. I've talked with a lot of women who've gone through surgical menopause and they says it hits like "whomp" overnight, and many of them opted for hormone replacement for the "gap" until natural menopause would have been when it was only a few years (unless of course the hormones would add to your risk). There's lots to consider. It's good to hear from you!

My schedule is starting to pile up with labs and dr appointments again and I'm losing sleep over it. I just want to not think about any of this for a while.

My PT and I are butting heads over expected outcome (his opinion is more negative than what the doctors told me) and once in a while he says the most flippant, offensive things. I can't believe I found a situation that merits saying this, awful as it is, but this guy needs breast cancer in his life, so he can have a more of a clue. I actually emailed him after my visit saying "I already feel $#^**% enough about my body, but thanks for rubbing it in."

Wow Raven, I that's a lot of periods for 55! (Things I never thought I'd say.) Everyone I've talked with - women who've had removal or doctors - tell me they use 50, 52 as the cutoff for "natural" menopause. I can't imagine 58. I didn't think it was that common to run so late in the 50s.

As for the PT - yeah, I really like him but he has his doofus moments. He's young and he's obviously had a healthy family with no personal/family cancer experience, and it shows. He reads his emails but never replies, so I expect he'll brush past and ignore it. It's more important that I extract whatever info he has to take to the next doctor appointments anyway. I've told him before I don't believe he means to be an insensitive jerk when he says things like that - I just think he doesn't THINK. But he also does believe that sympathy makes for a bad PT, and there's some truth there, too, but only I think when you get so sympathetic you coddle the patient instead of challenging them appropriately.

I think I'll diagnose him with a fairly significant case of Foot In Mouth Syndrome.

Raven4mi I feel the same way about Rads. I'm left with so much and the 'scatter' caused my stroke most likely. My burns on my neck are so visible and such a reminder to what has gone on.

i have an event Saturday and will see many I've not seen since my dx. I was thinking I would wear a wig to protect myself from the 'i love your new haircut' or i've had some ask if i'd ever get all my hair back. Don't know if I have my big girl pants on enough to put up with it all. thoughts? DH says my wig now looks odd because he is used to my short spiky hair.