May 2016 Surgeries

StonyPony

@BonnieBleu I would definitely ask your cancer center if there are psychologists who can help you through those feelings about your mom, her cancer, and your cancer. Washington University/Siteman has specific psychologists just for cancer patients so I hope you have access as well.

Also the first thing I did when I was diagnosed was asked for Cymbalta. I've been "dealing" with depression on and off my whole life (47 like you). I couldn't see trying to get through cancer and fend off depression at the same time.

I cannot adequately express how much better my quality of life is now. I don't get as frustrated with things on a daily basis anymore, no more feelings of being alone in the world (or it just doesn't matter as much now that I'm happier and more content with myself), and no more random weepy spells. I also am able to have a much better relationship with my mother now which is good as I'm staying with her to recuperate! We are very close but after my father passed 4 years ago I'm her main support system for everything from being a friend and daughter to maintaining her house- it's an overwhelming burden at times but now I manage it better.

I don't think I would be making it through this as well without the Cymbalta- frankly I think they should put it in the drinking water supply.

I wish you the best

Bonniebleu

I can't thank you ladies enough for taking the time to respond to my post.: )

I would like to seek counseling (prefer someone with cancer experience), but do you think insurance would cover it?

Thank you ALL again! :

GreyKat

Bonniebleu - I think mental health / counseling coverage depends on your insurance. You might want to check your policy or check your insurance company online or call them directly. Mine, for example, does not cover mental health, categorically, because they're stuck in the stone age. Yours might but you might need a referral first or something.

I would also hunt online and hunt for local hospitals, clinics, (and churches if that's your thing) and see if there aren't any programs for cancer counseling available for free or covered by grants through hospitals or something. You might end up with a larger support group instead of private therapy that way, which you might not prefer, but it won't be so awful to meet others going through the same thing. Something might be better than nothing.

We all get stuck sometimes and need a bit of help to get going again, and maybe just an informal cancer support group might be enough to help you pull yourself out of your rut. If you think that won't be enough, or you want private therapy, which I totally think would be reasonable in your situation, then I suggest wading through your insurance policy and checking your coverage, then seeing if you need a referral, then finding someone in the area who does cancer patients' therapy, and then making sure they take your insurance.

I don't know how your finances are (and I've had my share of scrappy times), but there's the option of saying "I really need this" and trying to private-pay, even if it means you find someone you like and space out your visits longer and have to scrimp for it. I think it could be worth it, especially if you sort of fill in with a local support group for cancer survivors. Kind of recruit a new network of people who "get it", if you can. Larger churches tend to have groups like that, and all the hospitals in my area offer support group meetings too, as well as some of the regional cancer activist groups. I hope you can find something local to you. Good luck with insurance.

SpecialK

Bonnie - there is also a well established Illinois ladies thread here on BCO, don't know where you live, but I know they get together. Here is the link, below. Some of them may have resources they can recommend also.

https://community.breastcancer.org/forum/153/topics/504025?page=1066#post_4736997

MoreShoes

Valstim, hyperthermia exists since 1980. It's not experimental but they're having ongoing trials to find the exact temperatures that work the best. Since this can be used only under certain circumstances, in a small group of people, it's not widely available and I can't find too much information about it. Unfortunately, I'm one of the "lucky" ones :-(

But talking with the RT changed my mentality. I'm not ready with the treatment yet. I have to go through the rads. I'll join you in July.

raven4mi

Bonniebleu, as the others have already recommend I would encourage you to find a support group or practitioner you can talk to in your local area. The hospital should have personnel on hand who can help you find the resources you need.

Hang in there. We're all changed and coping in our own ways.

WenchLori

Bonnie, I agree with all of the above. Find someone you can talk to soon! I'm 56 and I've had depression my whole adult life. I'm on 3 different meds to keep everything balanced. Lucky for me my insurance covers physical therapy and mental counseling for all BC patients. If I need to schedule an appointment after all is said and done I will be there with bells on! Having a sounding board is a wonderful thing please hang in there!

myToyStory2

What a difference a day makes - headed back to the hospital tonight to be readmitted for infection. Will get started on IV meds and then learn what the game plan is tomorrow. Ugh.

georgiaredskin

Bonnie, I didn't feel like myself at all either after surgery. It was the most brutal and life-changing surgery I could imagine. Sending hugs. The anti-depressant and anti-anxiety meds my Doctor put me on really have saved me.

Greykat-LOVED your whole post and description of our traumatic experience. Lol and SO true about the "pink crowd". I go back to work tomorrow and am anxious about dealing with any members of the pink crowd. I hope nobody gives me pink ribbons!

Mytoystory2-So sorry. I, too was diagnosed with pseudomonas, on June 2nd, and had to have my TEs removed and replaced on June 6th. BUT: I feel fantastic after it. I never knew how crappy I felt before wasn't normal. And now I get to go back to work tomorrow 10 days post-op. The setback stinks, but you will feel better. God speed

nurse88

Well! I had surgery on the 25th it was my second in 8 months this time it was not cancer in my left breast, but will be doing radiation again for precautionary reasons. I am so sick of Dr. appointments. Went to Gastro Dr. found area in my left kidney but I don't know the results yet from CT scan today, two Dr appointments next week and then radiation on the 12th of july I am so sick of all the appointments .

Maya15

I so agree with you about the pink crowd! It's also so far removed from the experiences of real cancer patients. As a frequent flyer in the chemo suite at my cancer center, I've never seen any patients in pink garb and no evidence of people feeling "empowered". We are all just trying to get through it the best we can. Only ever seen one lady who decided to go bald (no slight intended against anyone who wants to do it, especially at this time of year). Apart from that, all of us wear headscarves or wigs just like we put on a pair of shoes when we leave the house. I recently saw a post from a lady who was excluded from a photo op at one of these pink breast cancer awareness events because she was not bald -- she was stage IV and being treated with hormone therapy! That just summed up the pink crowd for me.

raven4mi

myToyStory2, oh no!!!I'll be thinking of you.Check in when you can and let us know what's going on.

Nurse88, sorry to hear about the kidney; hope it's nothing. And I'm sure we can all relate to the doctor appointments!I seem to be going through revolving doors from one doctor's appointment to another.It gets really old really fast.

Papillon1

talking of the link crowd - do you guys in the us have "race for life"? In the uk many many women run 5k on Friday, head to toe in pink for Cancer Research..my Facebok is full of pink runners getting sponsored.

Have mixed feelings.... Like I do about world Cancer day...

But I guess any research is good. But a breakthrough won come from a charity, it'll be the pharmaceutical companies or universities...

I haven't had cancer yet people tell me I am brave. That pisses me off. I am not, I am lucky, and scared of the alternative. I have been invited to a charity fundraising evening.. Because I had a mastectomy.... The world is an odd place.

grandma3X

Breakfast fail! Opened the fridge and a whole pint of blueberries fell out on the floor. Then tried cooking a scrambled egg in the microwave and it blew up Good sign that I should have stayed in bed.

I have mixed feelings about the "pink" crowd. Yes, they can be annoying, and yes, they like to dress us in pink and parade us out every October for Breast Cancer Awareness month, but I see them as a means to an end - the funds they raise (at least in part) go toward research that will lead to more effective treatments and hopefully a cure. Without their efforts, I'm sure that we would not have the treatments we have available today.

Research conducted at universities is funded completely by outside sources. Tuition paid by students is used to pay for teachers, staff, maintenance, etc. It is not used to pay for research. I'm a researcher at a university, for example, and depend entirely on grants - your tax dollars- to pay for my research, as well as my salary (the university does not pay me, and yes, I need my salary to do things like buy groceries , student support, and "overhead" to keep the lights on. In return, I generate valuable data that is used by local and federal agencies to understand how marine life responds to changes in their environment. Breast cancer research is done the same way, and would not be possible without grants from charities as well as from government agencies like NIH. If you read any research papers, you will see an Acknowledgements section that provides details about where the money came from to conduct the research.

I know that there has been some controversy about how much of the money raised by breast cancer charities actually goes toward research. I like to plug the charity Metavivor, which uses 100% of private donations to fund research exclusively on stage IV breast cancer.

I haven't had too many issues with people at work. There are several people who still don't know that I have BC and those that do have been very supportive. One woman uses the pity voice when she asks me how I'm doing, but I think she just doesn't know what to say. Several people have also shared stories about women in their lives who have had cancer, and it's oddly reassuring to hear these stories. They are mostly about mothers or sisters who were diagnosed years ago and are doing fine, even one who was diagnosed stage IV over 10 years ago and has remained NED after treatments.

Have a wonderful Thursday, everyone! MyToyStory2, nurse88 and Bonnieblue - thinking of you all today.

Momof6littles

Have you guys seen the photos from The Scar Project? They are incredibly moving and the tag line sums it up "Breast Cancer is Not A Pink Ribbon." I'm a photographer, so those images really resonate with me.

I don't fall in with the pink ribbon crowd. I tend to think of breast cancer as a war, lots of battles fought, hopefully new intelligence with turn the tide. Too many casualties. But I don't fault the pink ribbon folks. They are kind of like the girls selling war bonds. All cute and happy and positive to keep the support coming. It's a fundraising effort and so pink empowerment is a part of the sales tactic.

I have been told I'm brave too because I had a prophylactic surgery. I'm not brave, I'm scared. Scared of the alternative.

Nurse88, Mytoystory, and Bonnieblue, I'm sorry you have all been through so much. Deep breath, hang in there. It's one day at a time. Sending you a virtual hug.

GreyKat

I agree that it isn't bravery that drives us through this, it's fear, or terror, or just the basic compulsion towards self-preservation. But parts of this are really scary (like for me, this surgery!) and I think people seize on that and call us brave for doing it anyway. I was called brave by a doctor, and I wasn't offended. It was his way of acknowledging that I was doing something he considered horrible, hard to endure, and painful. And you know, I agree. This isn't a walk in the park.

Grandma - with all due respect, I fully understand how academia and research works because I used to work in that environment. I still have an enormous problem with *cough* certain breast cancer charities in the US, and I won't give them the time of day or attend their events or buy their products (I know, on this forum, irony). They don't need to pocket my money when they've got so much of the public duped and the media in their bed anyway. While you make some valid points about how research is done, for me that aspect doesn't negate their faults. I support federal and state grants for cancer research, not private companies or mega"charities" lining their own pockets and funding research geared towards specific agendas. Actually, that holds true for my views on all funded research. Alas, we don't live in an ideal world where neutral sources are providing ample funds for scientific research...

Maya - that photo shoot where they kicked out the woman who still had hair - it's marketing and it's all about image, not facts. Such a shame and how hurtful to dismiss what that woman was going through and minimize her experience.

About the pink crowd and the "cancer empowered me" crowd - that works for some people, and good for them. Whatever it takes to get through this whole thing and maintain your sense of self, you know? It just doesn't work for me and I have run across multiple women who feel horribly pressured by that group to maintain a false energy and false happiness or else feel like failures who are "doing cancer wrong". That angers me so much, because hurting women who frankly have their hands full just making it through one day at a time REALLY don't need to be pushed hard to "be better at handling this" on top of everything else. No one has the energy for that and it's terribly unsupportive and undermining. But if rallying with the pink crowd and feeling empowered for taking control of your health or whatever gets you through the day, good for you. Just (media included) stop yelling at the rest of us! Sometimes this is just HARD and that is OK.

Sorry to hear about infections and kidney stuff and yeah, I just had to tell my supervisor that I wouldn't be back for at least another month, maybe longer, because of complications. *sigh*

raven4mi

Grandma3x, oh, how we've all been there! Sorry about your breakfast fail (but I must admit, it made me laugh a little. Sorry!)

I'm on the side of "mixed feelings" with regard to the pink crowd. I, myself, have even participated in some of the "pink crowd" events. At least for me the bottom line is "any advertising is good advertising", so whatever brings awareness is OK by me. Personally, I'm more of a "black warrior, f&@% cancer" kinda girl, myself.

grandma3X

GreyKat - sorry about my rant above - it was in response to the statement that "a breakthrough won't come from a charity, it'll be the pharmaceutical companies or universities". Just wanted to make clear that university research depends a great deal on those dollars. Unfortunately, every funding agency,whether it is federal funding or charities, have specific agendas. Gone are the days when a scientist was given a lab and money and told to do what they want (the good old days at DuPont for example!).

I'm careful with who I give money to, but won't put down the megacharities that we all love to hate. The portion of money they give to research, or to provide funds to women who need to travel for treatment or free cancer screening for the uninsured, is better than nothing. In the end, bad publicity will only hurt cancer survivors (or victims, or warriors or whatever label we are comfortable with) when people get so fed up that they are no longer willing to open their wallets for any charity, and the research that moves us toward a cure will dry up for lack of funds. Just my 2 cents.

Raven -I think the "black warrior, f&@% cancer" description fits most of us I don't have much pink in my wardrobe, so I may borrow this phrase when people want to dress me in pink.....

GreyKat

@Grandma - funny, now that you mention it, the only two pink items (striped shirts) I own are currently sitting in the box marked for donation/garment recycling. I'd love to throw in the other shirt I wore both times I was hospitalized and wore almost nonstop the first 2-3 weeks because I'm so sick of looking at it and it doesn't exactly remind me of anything positive, but it buttons and I'm afraid I might need it at my next surgery.

We simply aren't going to agree on the charity thing, but it takes all kinds and all views to make the world go 'round.

Lest you think I'm some anti-charity crab, I will swear up and down that I've been volunteering for nearly a decade at various places, because I prefer to give my time and energy to causes I support if possible. I like the background work or the one-on-one stuff. No shouting on street corners or public marching for me!

MoreShoes

Today I made the mistake to go for shopping for a compression bra. When I took out my bra, one of the foobs fell and rolled to the next booth! :-)) The curtain was open but, thank God, there was no customer there and I could easily reach it.

Lesson learned. If I ever want to do that again, I have to be VERY careful.

rvgirl2016

Moreshoes, thanks for the laugh today   I know stuff like that will happen to me, I've always been clumsy  and if something might happen, it WILL happen to me, LOL.  We went shopping  for the first time today since my surgery and I wore my "Knitted Knocker" so I felt I wouldn't be stared at for being so lopsided (I'm a 38DD).  Getting out of the car I told my DH, please tell me if my boob starts coming out or something

raven4mi

Had another fill yesterday on the left. Even with four inserts from Genie bras on my right side, it didn't match in size to the left TE side.

So, I literally just stuffed my bra with a sock.

That made me laugh. Thought I'd share.

Papillon1

I don't like the idea that fighting cancer is a war. Or that it's a fight at all. Because it's not a fair fight. My mum didn't lose her fight because she didn't fight hard enough or didn't train enough or didn't use all the weapons she had...My mum wasn't a loser. But cancer stole her. But she lived every day with positivity in mind and found joy where she could. And that's what we should all learn to do - cancer or no cancer.

So I guess pink ribbons and raising money for research is good - gives the research a chance.

grandma3X

Rvgirl, Moreshoes and Raven - lol about your adventures in creative stuffing I am constantly checking myself to be sure my padding is where it should be. With one TE higher than the other, I have to pull down one one side and pull up on the other. I've gotten to the point where I don't consider them breasts anymore and have to remind myself not to keep tugging at them in public.

GreyKat - no worries! I am right there with you when it comes to people telling me how I should be feeling. I don't feel brave or lucky, just scared.

Momof6littles - thank you for letting us know about the Scar Project! The images are very moving and a great way to show people what the aftermath of BC really looks like.

Have a great day everyone! MyToyStory2, I hope you are doing better and that they have gotten the infection under control!

Momof6littles

I just want to share what has worked wonders with scar care. I was told by the surgeon's nurse practitioner (who used to work for a plastic surgeon) that moisture and massage were the two best things to minimize scars. She said that silicone scar creams were really the best at reducing the scar appearance but quite expensive and so they only recommend it for visible scars like on the face. She saidthat any lotion would do to help soften the scar.

I was using aquaphor and it was ok. Last night I used 100% pure organic argan oil and OH MY, what a difference. I use the oil as a light moisturizer on my face, around my eyes, and on a whim tried it. Immediately, it felt really soothing going on. In the morning, my incision area was significantly flatter, less "angry" looking and the entire area less sensitive and less tight. Supposedly argan oil has anti-inflammatory properties.

So, just thought I would pass it on. It is pricy (I think I paid $25 for the bottle), but it lasts a long time (for my incision scar I use only 4 drops on a side and gently massage it in) and it works as a general light moisturizer (in the winter it's really nice end even my husband uses it).

You should be able to get it at a health food store.

GreyKat

@Papillon - I don't like the "cancer is a battle/war" metaphor either, because it does imply that those who don't get better have lost through some fault of their own. I don't think your mom didn't fight hard enough. I think the deck is stacked and no one gets a fair chance here. I'm sorry the usual cancer talk is hurtful for your family, and I understand. Language is tricky. I think the war metaphor is popular because there's a lot of anger and desperation involved - people mad this happened to them or someone they know, and people desperate for help or a cure - and some people probably like the fight/battle/war idea because it motivates them. But it certainly doesn't work for everyone.

"Cancer: it's horrible and steals our loved ones and our quality of life and our actual life away and we really need to do something about curing it immediately" just doesn't have the same marketing ring to it.

In other news, I'm nearly 6 weeks out and I can't move my left arm out to the side without major burning along my breastbone where the pec is pulling - but just that side. This has been consistent since week 1 and has not improved. The nurse said it was "normal pain" but I don't see why it wouldn't be improving even though all the other chest-related stuff has been healing up more or less as expected. I'm wondering if, since it's just the left side where the pec attaches, it has to do with the fact that the TE on that side is in a more centered spot than my right side, which is more towards my actual side. They don't look horribly off-center yet but there is a definite difference.

I'm just disappointed because I was told beforehand that I could expect a full return of my range of motion in my upper body. I hope this improves once the TE are swapped for squishies.

myToyStory2

Just noticed we're over 1000 posts on this thread. Congrats on being a great resource, ladies!

I'm still at the hospital hooked up to IV's, being treated again for pseudomonas and cellulitis. My PS, who was so encouraged by my progress on Tuesday, appears a little discouraged now. When he saw me this morning he said to plan on surgery this Sunday. The two options he presented yesterday were either to remove and replace the TE and alloderm, or just to remove them and try to heal. This morning he didn't indicate which way he was leaning, but he's coming back to check on me this afternoon and I'm sure we'll chat again.

The first time I was re-hospitalized with the infection, it interfered with my daughter's bday. This time it disrupts Father's Day and our anniversary, and I had to cancel a little family trip we had planned for the weekend. A good reminder of the sacrifices our families make for us throughout the process. And mine haven't complained once.....I do love them!

GreyKat

@myToyStory - oh noes! Not more surgery! How frustrating that must be.

And you're not alone - my anniversary got eaten up in the early days where I think I was too pained, dizzy, and nauseated to even notice it passed by. Better luck next year, right?

Hang in there! Hoping for a better outcome for you...

Papillon1

I am on my bed resting as it feels like my "Boobs" are on fire... Sore skin, sore to love, sore sore sore down the sides where I have heaps on internaL stitches.

Not sure why, 24 days on, today is worse than other days but it is.

Overdid it I expect - caring for the kids, dog, house... Am not so good at resting. Are you all still resting lots?

Get well soon toystory xx

Mom4four

mom of 6 - Thanks for the info on the argon oil, I just bought some Shea butter with vitaminE from bath and body works, it feels great I will let you know how it does. I am hoping it will help my radiated skin as it stretches