Lumpectomy Lounge....let's talk!
Comments
-
So Molly- our researching friend. AM trying to figure out what the heck to eat, drink and take (in terms of vitamins and supplements) to help my body heal after the chemo/surgery/rads and now AI) as well as boost my immune system. Know we cannot take antioxidants. Looking at a few sites and trying to figure out what's what. Have you looked into the nutrition pieces of all of this? I have to er on the sie of what is god for ER+ since they default to that if you are Her2+ with overexpression as am I. Any ideas? Am currently taking 5000 iu's vit D, Tumeric, aspirin, a probiotic, adding fresh ginger to food and tea as I can.....just looking for more. It gets very confusing!
0 -
Today has been a hard day. I decided to go to church today, first time in months, even though I still have this stupid wound vac to lug around. I don't mind toting it, but it makes embarrassing "GI" noises. So, DH made a plan to sit very close beside me so maybe the sounds would be muffled. Turns out, that was the least of my worries.
After the Walmart encounter yesterday, I decided that I needed to fill out my top better. Maybe it would make the whole thing look better, including my large tummy. I have some soft Bali bras that are stretchy, so I first tried putting on a cami, then the bra but that didn't work. Then I tried putting on the bra, then the cami and that looked better. Popped in some bath poofies and off we went. About 30 min later, I'm getting out of the car and realize that these poofies are migrating toward the middle and upward. I could look down and see them. I surreptitiously stuffed them back down and under my arms. By the time church started I realized that they were on the move again. Once again, I stuffed them back down. By this time, my skin is getting tender. We had a lot going on in the service today--baptisms and confirmations--so I didn't want to get up and leave. We sit right up front, so I didn't want it to be a big deal. I just kept stuffing these poofies down and like the Walking Dead, they kept popping back up. At the end of the service I sprinted past the preacher in an attempt to be the first out the door. My DH was impressed.
But then we decided to go get some lunch, so the Battle of the Poofies was still on. I should have just taken them out, but I was on a mission to Look Normal. Looking normal when you're wearing a strawberry blonde wig and two blue mesh poofies is quite the trick. I kept my hoodie pulled tight around me, to hide both the wound vac and the fact that I couldn't keep my hands out of my blouse. Soon as we got home I took those f*ckers out and threw my wig on top of them.
So, now I'm feeling pretty blue (no pun intended.) I've tried researching DIEP reconstruction and living without reconstruction. My whole chest is sore and my tinnitus is very loud tonight. It occurred to me that it's only going to be cool for another month and then the hoodies have to go. Then what will I do? I like(d) to wear T-shirts from the various places we visit. Obviously, they will have to go. There will be no way to hide the fact that I have no breasts when I'm wearing a T-shirt. I don't know what I'm going to do.
I think this is the lowest I have felt since all this BC crap started. Up to know I've been pretty on top of things. But between that moron yesterday pointing out my big belly, clothing issues, and the poofie disasters, not to mention the ongoing wound vac, I think my capacity for accepting my situation has reached critical mass. And on top of all this, Downton Abbey ends tonight!
I just can't stop crying.
0 -
Poodles, what an awful day for you! Your humor hasn't deserted you anyway! Breathe. Again. What about a mastectomy bra??? There's no reason for you to give up your t-shirts. Did you go braless wearing them? Do any of your camis have a bra-like structure? If so, get some falsies and stick 'em in there. Some of us (Me me me) do that regularly since we don't have much. Mind you I have no clue what what's after a mastectomy but on the face of it, it would seem a cami might work best if you are sticking padding in (and not the shower thingies) - try hankies or socks?). Let me ask one of my friends what she has done. And I'll have her get in touch with you, if that's okay.
It will be all right - it just might take awhile.
HUGS!!!
0 -
I think part of the problem is that there is nothing left to hold the bra down. Now that I'm triangle shaped, everything rides up. I'm going to see the PS tomorrow and ask her about a mastectomy bra. I know she has not wanted me to wear any type of compression, due to the difficulties I've had with healing (or NON-healing, I should say.) I don't think I have ever felt so un-pretty in all my life. But then again, this is the first time in 49 years that I haven't had breasts.
0 -
Awww, Poodles...wow- you HAVE had a horrible time of it- Peggy is right- breathe. Again. Crying is good but only for so long, right? I really appreciate you sharing your story. And, again, as Peggy said, the t-shirts may really be salvageable- they make a lot of things now...a mastectomy bra? I have not had to deal with that but- is that something you could try? Talking even messaging people who had been where you are as we all know- can really help! I am sending you prayers and positive energy....please keep us posted!!
0 -
Great photo and, sounds like fun for all. Looking forward to ChiSandy coming this way the end of May and am hoping any and all of you will join us. Hugs to each of you!
0 -
Genie or Coobie stretch bras have removable foam shaper pads. I had bought a couple of Genies at the drugstore before my dx because I liked support when I sleep and didn't want my boobs dangling to my waist if I had to answer the door in my PJs or housedress--but even the XXL were too small. So I stuffed the foam shaper pads into the side of the right cup of my daytime bras so it'd match the larger left breast. Now the right one's bigger than the left, due to the seroma & fibrosis. Get a couple--so you can keep one bra's pads in their “slots" and use the other one's pads to augment them and provide a framework to keep the poofies in place. Amoena “Valetta" camis have built-in bras with slots for stuffing with pads or forms. HerRoom.com has a video on choosing a post-surgical, including mastectomy, bra--and the site has quite a few reasonably-priced ones of the latter.
BTW, Medicare and all insurance companies are mandated by federal law to pay for two mastectomy bras a year and a set of foobs every other year.
0 -
Poodles it's okay to cry. You have been through so much!
No one really talks about it here but depression is a very common side effect of breast cancer. My hospital and their Cancer Institute have a department of Behavioral Oncology. There are so many stresses associated with BC, as we all know. It's not just the physical, emotional, financial issues but marital and family issues as well and others too. Some of us are suddenly thrust into menopause.
I know I'm preaching to the choir but sometimes it's hard to recognize that we need help We are strong but we are human. There's no stigma in asking for help or having someone else to talk to or taking medication
0 -
Yes, I believe I am having some depression here. Thank goodness I'm already on some psych meds or I would go completely off my rocker. I think they are the only reason I haven't lost it before now. I did get my MO to re-order some sleeping pills last Friday. That is one thing that will set me off, lack of sleep. Two days of no sleep and I become manic, which is never a good thing because I don't make good decisions when that happens.
0 -
It's hard to find time to post lately. I get too tired at night. But my thoughts are with everyone all during the day, every day!
Saturday I went snowshoeing! It was only a few miles, but long enough to test out my arm at 8500 feet. All was good, no swelling or signs of LE.
Poodles, I'm really sorry you are feeling so down. I wish I could give you advice about what to get but I'm ignorant. Looking at mastecomy bra websites, it seems like you can get some forms and bras that will look very natural. I don't have any idea how they feel when you are wearing them, but I bet it's not bad. I totally agree about not making decisions when we are tired! I thought you were going to say that you sat close to your DH in church so you could blame the GI noises on him (that's what I do to my DH ).
MLP, what a beautiful hike you had. It's great to hear you are feeling fairly normal at this point.
Sandy and Peggy, I'm so glad you could get together in real life! Great photo of strong women!
Molly, I'm an obsessive researcher too. I think it's almost a necessity in this day and age.
According to what Stellamaris reports, I think I'll ask for Letrazole when it's time to start AI therapy
Mel, I know your surgery decision is a hard one. I'm glad you have some time to think about it.
That's all I have the energy for right now. Tomorrow will be rad treatment #10 of 30 for me. Wow, that's a third done.
0 -
Moondust. I started out on anastrozole with no problems. Then the pharmacy switched manufactures and had leg cramps, a dark mood set in and then my tongue and lips started to burn. Called the pharmacy and was told to stop immediately due to a potential allergic reaction. Within 48 hours and antihistamines all symptoms were gone. I am on letrazole right now with no real side effects except I am hungry all the time and i get mild hot flashes. Not sure if the hunger is a side effect of the drug or a side effect of all the stress and winter months. The mail order pharmacy did send me 90 day of the anastrozole in the Teva manufacture. I am going to give that a try again when the letrazole is gone and see how that goes. The weather is getting warmer and I do tend to become somewhat depressed in the winter months normally if I don't get outside much. Except for when I was on the anastrozole manufactured by accord I have not had any real side effects from the drugs.
0 -
Poodles, sorry you're having to deal with all this. In the TLC catalog from the ACS there is a bra with the cups filled with "tiny lightweight beads." There is a longline type which may help with riding up. If I needed one I might try one of these. The put it on and go part appeals to me.
0 -
I don't have time to catch up. Quickly, great picture of all of the bco ladies. Sandy and Peggy you are both lovely. Sandy, yes that is actually when my DS passes away sadly. I will share the whole story when I get time. Mlp3, I am not a big believer in supplements but I do take a calcium, magnesium and vitamin D combo, another 2000 IU of D3 and a sublingual B6,B12 and folic acid every day. I also make sure that I eat blueberries, apples and walnuts daily and add ground flaxseed to my cereal everyday. When I am run down I add vitamin C and Zinc. Otherwise I try to eat lots of greens especially peppers and kale everyday. Some days I fail to eat well but for the most part I have everyone eating better now.
Poodles, sorry for all you are going through. I have a good amount in my mx side so I look OK in a bra. I think you should research DIEP. Where are you again?
0 -
HH- I've become a research fanatic in all of this! Part because I like to know what's going on and why my team is making the decisions that they make... It empowers me too. The other part is that I'm vegan and I want to make sure I'm doing right by my body. My mo said zero supplements and try and eat your vitamins. That's my mantra anyhow as, like Molly, I'm not a big supplement person to begin with. I do take a B12 sublingual spray as vegans do get enough b12. I also take one drop of vit D. That's it! I love greens and will sautée them for breakfast;) I'll juice some oranges, lemons, ginger and apple for an immunity boost too.
Poodles- hang in there. And sleep depravation definitely adds to the depression. Chisandy gave some great advice about the bras and the insurance coverage for the mx items. I sincerely hope that you're having a better day. ((Hugs))
Moondust- nice on the snowshoe trek!! And you're 1/3 of the way complete with rads... Congrats! How do you feel during rads? That's my next hurdle.
Molly- ditto on the supplements and walnuts;) green apples and almond butter are my favorite snacks and energy booster for the afternoon too
0 -
Just made this Tuscan treat for lunch;) Sautéed carrots, onions, baby kale, spinach, cannelini beans and garlic in a touch of olive oil. I added a shake of nutritional yeast for some added flavor and vit B12. Clean, protein packed power lunch;)
0 -
Molly, I'm in Georgia. I have a good PS; I'm just one of that percentage that has complications (and I believe it's a substantial figure.) Today when I went to see the NP for this wound vac change, I broke down in tears. We talked for a long time about the whole business, starting with what that idiot said on Saturday, all the other stuff (complications, chemo, BMX, everything.) She was very sympathetic. She also gave me a prescription for some prostheses and a mastectomy bra to take to the Women's Center. I've got to call Cigna to make sure they will pay for that, and also to make sure they will pay for reconstruction, should I decide to go that route in another year.
At this point, I am strongly considering a DIEP. Obviously, I have to get healed from all this other crap first. I have decided to wait a year before I make any final decision. In the meantime, I will try out prostheses and see if that's something that appeals to me.
I've also got a call into my doctor regarding the depression. I'm hoping she can tweak my meds a bit, although I've about maxed out on some of them. I'm going to also talk to her about my disrupted sleep. Part of the problem is that I still have to sleep on my back; no side sleeping, due to the wounds on my chest. I am not, by nature, a back sleeper so it has been a real challenge. So far, the only thing that really helps is taking a high dose sleeping pill. I have tried a lower dose this weekend, but it just doesn't do as well. I am wakeful off and on the entire night, to the point that I have to get up and wander around the house for a bit, so I can settle down again.
<le sigh> Sorry to be such a Debbie Downer. I've done so well all through this experience and now I'm just trying to hold on to any shred of hope I can find.
0 -
Poodles, we're the best place for you to cry and tell all your problems. We DO understand and want to help. If we don't have advice, at least we can hug you (very gently) and send positive, healing thoughts your way. I'm so glad that you were able to really talk to your NP. Sounds like she really understood what you were saying. Perhaps you had been strong for so long, keeping the sadness inside, and now that the damned wound is being such a pisser, it's all catching up with you. You're very wise to see about getting something for sleep and perhaps for depression (you sure have the right to be!). It seems to me that you might be better off waiting until you are rather healed before doing something about a bra. Wear camis if you can and no bra. Or a sport bra (if you have one that fits and you can breathe in!). I would think that vacuum gets in the way of everything. Keep talking to us. We LISTEN! I think it might even help you to vent here knowing it is "safe."
HUGS!!!
0 -
(((Poodles))) I think DIEP will work for you but yes, you need to heal fully first. I am so sorry about all the trauma. You can also make an appointment at Nordstrom's for a mastectomy bra fitting. I heard they are very well trained.
0 -
Mustlovepoodles: I second what PontiacPeggy said,
0 -
MLP3- Thanks for sharing the recipe. Looks really good. I've never use nutritional yeast but have seen it in quite a few recipes lately. How do you use it and where do you buy it? Cheers!
0 -
MLP, the Tuscan recipe looks wonderful! It is exactly the type of stuff I eat. I am doing fine with the radiation treatments so far. Nothing hurts, no fatigue. I do feel a strange "sunburned" sensation inside my breast a few hours after treatment. It's hard to describe, but it goes away (so far). I love my RO and trust his opinions, which helps make it a tolerable experience. A lot of women on the rads board seem to be having emotional difficulty with rads for various reasons. I can see why it would hit some people that way. But I think the whole daily procedure is a breeze so far. The most annoying part is putting my arm up in the arm holder, because my shoulder gets stiff and sore. You'll just have to see how you react, but hopefully you'll sail right through!
Molly, I'm glad to see you are such a healthy eater too. I get all vitamins and minerals from food except D3 and sometimes I'll supplement zinc and K2. I just planted my greens garden - romaine, kale, swiss chard and arugula.
Violethope, I use nutritional yeast sort of like a cheese substitute. It has its own unique taste which many people describe as cheesy. I sprinkle some on my beans when I make a simple bean burrito with avocado. Like MLP said, it is loaded with Vit B12 and other good things!
Poodles, I'm sending extra virtual hugs your way. You will feel a warm huggy feeling when they get there
I'm with you 100% on the careful way you are making decisions. I bet your sleeping problems are finally catching up to you and affecting your usually positive outlook. Your wound is closing, though, and that's a very good thing!Brutersmom, thanks for sharing your AI experience. It's good to know the brands of anastrozole that seem to cause reactions in a lot of women. I'll avoid those! I'm having a few hot flashes anyway, because I have been on hormones all my life since the age of 16. First the big dose birth control pills they gave in the 70's. Then the smaller dose birth control pills (except for 1991-1994 when I was getting/being pregnant). Then HRT until last December. I'm hoping that just being off hormone replacement after all that is helping to suppress any other cancer cells that may have escaped detection, until I start my AI.
0 -
poodles- happy that you had a nice chat with your nurse. Sometimes... A glass of wine can help relax you a bit. And with sleep meds... Maybe you'll sleep better. I've had a few surgeries in the past couple of years and I hate taking meds. I'd rather risk a glass of wine than put another medicine in my body. The Genie Bra company also has a very fitted camisole that might work. I bought one after my lx. What about a genie bra with fillets and the camo over it?
Violet- just as moondust said, nutritional yeast is a vegans substitute for cheese. I also make vegan pesto with it and you wouldn't know the difference! I buy the Braggs brand and I get it at whole foods. But I'm sure it's at other major stores in the spice and salt section.
Moondust- I would add parsley to the beans if I had some. Maybe some arugula too;) ooo.... Beans, peas, parsley, onions and nutritional yeast... And of course garlic! Ok, im hungry!
0 -
I forgot to pass along a nugget I gleaned from my RO today. He said the Oncotype Low and Intermediate classifications are in the process of being revised. Soon Low Risk will only go up to a score of 10 instead of 18. He is not sure if the High Risk category will change. This will put more women in the intermediate category. He said he's not sure what good that will do - enough women are in the gray area already! But the new categories would put me in the high intermediate range instead of smack in the middle.
0 -
MLP- thanks about the supplements. I was never big on them but am trying to eat better and less, move more, and am willing to take supplements if needed.
Poodles- A second, third, or whatever number I am to agree with Peggy!! And, MLP is right, sleep deprivation can really do a number on every aspect of your life. You have been through WAY more than you needed and know I am sending hugs, healing thoughts and prayers your way- well, to everyone here but, extras to you,!
0 -
Moondust, I am a 13 and was already classified as "intermediate" after the TailorRX early release was out.
0 -
HH, I was told to stick to the basics of D3, calcium, magneisum and zinc. I also take the B6/B12/folic acid combo for the cancker sores I get in my mouth.
0 -
Just checked the mail- rec'd a "reminder" for my 6 month follow up mammo since lumpie. Was really feeling better about the reduction in SE's from Arimidex since being on it for almost a month and getting into a new groove...now a mammo. Eek!
Maybe I can ask them if they have a porn position for that- for a laugh...haha.
0 -
Molly, my MO wanted me to have chemo with my 13 Oncotype. But the tumor board said no. He wasn't upset or angry that I didn't have chemo. It does feel like we've had the rug pulled out from under us, though, doesn't it?
HUGS!
0 -
HH definitely do that!
HUGS!
0 -
Moondust, my MO told me 16 was still “low” and that at my age and with my comorbidities chemo would do me more harm than good. She cited the fact that although I was only 75% ER+, I was almost 100% PR+ and my mitotic rate was 1. With chemo, I am predicted to live 19.6 years; without it, 19.1. Those extra 6 months don’t seem worth it, especially if they are 6 months spent suffering miserable side effects (including possibly life-shortening infections, considering my antibiotic allergies and asthma); and both outcomes would still take me to about 84-85 y,o,--which with my family heart history would likely have been my life expectancy even w/o cancer. The reason TailoRx released data only on women scoring 10 or lower was that the 11-17 cohort was larger and there haven’t been enough recurrences in either the endocrine-alone or the endocrine+chemo groups in that cohort to draw any conclusions yet.
HH, speaking of “porn position,” did anyone see the beefcake swimsuit fashion show segment on “Fab Life” today? Actually, I find men sexier fully clothed.
0
